Episode 19: Uprooting and rerouting with camilla cook

~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Lauren Fenton 0:01

Okay Rina, you seem stressed what's going on?

Rina Teslica 0:05

Do you ever feel that parenting disabled child is chaos like absolute paperwork chaos? There's just so much admin. On top of caring for your kids. It's like, I'm my frickin daughter's PA.

Lauren Fenton 0:20

Ah, yes, you should try the new Hibi app.

Rina Teslica 0:25

An app?

Lauren Fenton 0:26

Not just any app. It's disabled parenting mega PA organisation, so you can schedule appointments, have reminders for your medication. Have all of their medical notes and letters in just one place?

Rina Teslica 0:40

Hang on. spell this out to me again.

Lauren Fenton 0:42

hibi HIBI it's a Disabled Parenting organisation app. I wish I'd had it when Bea was younger. It gives me a sense of control over well, the uncontrollable

Rina Teslica 0:55

Sounds intriguing. Who doesn't want to organise disabled parenting chaos? One notification at a time?

Lauren Fenton 1:01

Haha. Yes. It's my new sidekick Side kicking the shit out of disabled parenting organisation.

Rina Teslica 1:08

That's the least catchy strapline I've ever heard Lauren. Yeah.

Lauren Fenton 1:12

Okay, fair enough. They won't want it. But if you like Rina, and I want to give it a go, you can download hibi for free on the app store now.

So today, we spoke with Camilla Cook. Basically, her whole life was turned upside down. During the pandemic, when she was pregnant with her youngest Sylva, that it's about uprooting and rerouting because she had to leave the country she was living in. Life was changed by the conditions that they discovered to do with her unborn baby and when Sylva was born, but also her life was changed in respect of her work, where she was living, she left friendships behind. It was a huge, huge change in her life. As Camilla refers to in that episode, she really does acknowledge, you know, she had so much support and so many advantages. When it came to this situation, her privilege at being able to come back to the UK. In the situation she was in having family members here that were able to step in and support her getting her tapped into the NHS. And systems of support may have taken time, but it was it was absolutely there for her. And yeah, I think it's just we are very aware of that. And she's very aware of that. And so it's just her story and her experience of uprooting and rerouting Do you feel you've rerouted your life as a consequence of Lua. Rina, what's changed? What's the knock on impact been?

Rina Teslica 2:54

I think when you have a special needs kid, it's going to change everything. Not only like, the way that you view your child, and all of the hopes and dreams that you had for them. And also you as a mum, but I think for me, it's had knock on effects on how my friendships have changed. Not to say that I don't love my friends and their fab. Because you are and I know you listen, loving.

Lauren Fenton 3:17

Careful what you say.

Rina Teslica 3:18

But I don't see my friends, especially my like childhood friends or girls that I went to school with and grew up with, you know who you are. I don't see you. And I think there's a group of four or five of us. And it's just that our life paths changed. You know, some of us, some of us have children. Some of us have special needs children. Some of us are like travelling the world and doing other things. Some of us are like, super into our careers so incredibly busy. And I think it's having that acceptance that it's not that I don't love my friends, but this is just what it is for me. Now. It may not always be like this. And I think in the beginning I was I tried really hard to maintain those friendships. And it's hard, hard because you're juggling so much other stuff. Something has had to give and sadly, my friendships I've had to give.

Lauren Fenton 4:12

Yeah, it's hard when it's I think it's true with anything that's going on in your life. It's like, actually, you do want to connect with people who get it when you at times, and when your time is extremely limited. Like it's hard to do all the maintenance that's required to keep every friendship going at the same pace as it once did. I think that's kind of natural as you get older and your passcode in different directions. But it's Yeah, particularly when you've got a kid that

Rina Teslica 4:41

exactly and then you end up you know, just because of the situation that you're in, you are surrounded by other parents who are in the same kind of same or similar boat as you. So naturally, you're reaching out to those people because they get it.

Lauren Fenton 4:55

Yeah, yeah, definitely. I mean, I think my life changed in lots of ways. job which we talked about a lot and then passed on the broadcast but, and wanting to go into and do something in the SEN space. And I think that's true. A lot of parents not all and it's like you don't have to be but it's definitely kind of changed what I want to do professionally and where I want to invest my time. It's hard to know, isn't it because you don't know what you would have done anyway, but erm.

Rina Teslica 5:25

True true

Lauren Fenton 5:27

It's changed a lot. It's probably changed how I parent my older daughter just because I've got that big fat perspective on what really matters. So this is uprooting and rerouting I hope listeners enjoy.

This is the fucking normal podcast, the cheers, tears and Friday night beers of parenting disabled children.

Rina Teslica 6:05

I'm Rina, and I'm Lauren. And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories and chat about the things that we've learned and are still learning.

Lauren Fenton 6:21

Prepare to sometimes laugh, sometimes cry, but hatefully leave with a shot of optimism in your arm. And don't forget we are talking from a parent's perspective. We would never presume to talk on behalf of the disabled child or adult. So expect bad language and quite frankly some brutal honesty. Because

Rina Teslica 6:41

really what the fuck is normal anyway?

Camilla, our guest today currently lives in Brighton with partner Will, five year old son Freddie and Sylva, who's just turned two. As an English teacher, she was living in Tanzania with Freddie and well, when she became pregnant with her second child. Silva has now got a peg. She's nonverbal and is utterly gorgeous. Even on Zoom, when we last chatted she charmed the pants of Lauren and I, she doesn't yet have a diagnosis. But Camilla is waiting on the results of genetic testing. So hello, Camilla, welcome to the podcast.

Camilla Cook 7:28

Thanks for having me. Really, it's lovely to be here.

Rina Teslica 7:31

How are you feeling? Not too nervous?

Camilla Cook 7:33

A little bit nervous. But I was thinking back to the reason I got in touch with you first. Because because I just loved listening to that very first episode just was like, Yay, voices like mine. And I just, I'm just really, it's really nice that you've made time for me. So

Rina Teslica 7:49

we're very grateful you've taken the time to be on the podcast. So can we start at the beginning? Where were you when you fell pregnant with Sylva and kind of what was happening with the pregnancy and all of that?

Camilla Cook 8:05

Yeah, so I was some we were in Tanzania. And as you mentioned, and I was teaching there in an international school, and that's kind of what my our life had all been for the last five years. Prior to that we were in Thailand. And I had my son in Thailand. And it was all pretty straightforward. And you know, despite no opportunity for pain relief during birth, because most of them have C sections, His birth was pretty straightforward, and everything was fine. And, you know, it was the sort of glowing, lovely, initial year and a bit with him. And then we moved to Tanzania, and I've just feeling super confident about being a mum that can handle like, having a baby in a developing country. And so yeah, we try it. We're trying quite for quite a long time to get pregnant with silver. And then we did. And it was just a funny time because it was COVID. And Tanzania had a policy at the time and I need to pick my words quite carefully because it was literally illegal to mention the word COVID or Coronavirus. You couldn't talk about it. You couldn't put it in writing, you can put it in an email. So the school that I was working out we had to refer to it as a respiratory illness. Because of the respiratory illness. We closed the school following the lead of the rest of the world.

Rina Teslica 9:30

Wow.

Camilla Cook 9:32

It Yeah. It was really scary because the government then sued the school for doing that because there was no COVID in their eyes. It stopped at the border didn't cross over. And the president at the time was basically really worried about the economy economy, because if the if everything shut down, unlike here, it would mean people would starve to death and I think you know, with this country's best interests at heart He, he basically was like, Right, we can't, this can't affect us. It has to be we have to push on through it. But all sorts of interesting advice was flying around, you know, you just go into these inhalation chambers and suck on a lemon and eat a bit of ginger and you'll be fine. Yeah, it just it was a crazy time. So there's a lot of anxiety anyway, erm.

Rina Teslica 10:22

Were you worried?. Were you because I'm sure that you were talking to your friends and family in the UK and abroad who were living a different COVID life? Were you kind of stressing about the situation?

Camilla Cook 10:37

Yeah, hugely. It was really stressful, especially because we got COVID really early on. And there was a weird thing around it because

usually, was really stressful, especially because we got COVID really early on. And there was a weird thing around it because our friends, we'd been away with them for the weekend. And they then had it and knew they had it but didn't tell us and then we got it and found, so it was a weird dynamic with them. And there was just a lot more kind of cage Enos around it. Because there were fears that we would be if anybody with it would be taken to like a what do they call it like a quarantine camp thing that they built for Ebola. So right out by the airport, there was this huge building, which was just concrete boxes. And people were talking about us being put in there if you had COVID. So there's loads. Yeah. And then we're watching obviously, the UK NEWS to get our news. And I don't know if you remember the John Hopkins University map that everybody was obsessed with the beginning, which like showed all the cases across the world. And I was one of the 500 and something people that Tanzania acknowledged as having COVID, because I got tested. But from then on that people went for tests, but the only result that was possible was that it was negative. So essentially, you either didn't get a result, or you got a negative result, because there were no cases it was just not allowed.

Lauren Fenton 11:53

And were you pregnant by this stage or not?

Camilla Cook 11:55

Oh, no, this is before but the whole kind of atmosphere of of the time. I mean, everybody experienced it in their own way, didn't they? But in in Tanzania, it was it was a weird one. And we kind of got to know medical the medical services quite well. So when I did become pregnant, I was aware of the limitations basically, of what there was there, there was all sorts of information going around about the how they had one ventilator in the whole country. And having just strolled through Thailand and pregnancy and doing it there suddenly, it became a lot more kind of scary. And actually, we went to our 20 week scan and just said, Oh God, imagine if something was not right. And then something wasn't right. It was, you know, the whole Tanzania thing has just added a weird flavour to it. It was all it was all very, very stressful. And I wish I could say, you know, I just took it in my stride, but no doubt.

Rina Teslica 12:51

Did you know, kind of, because you already had your baby had Freddie in Thailand? Were you planning to have Sylva in Tanzania? Was it always I'm gonna fly fly back to the UK and have my baby there.

Camilla Cook 13:06

Yes, we were always going to fly back. That's what's recommended. Which gives you an indication of the facilities that they have. And also another want to come back to it. But you know, just made us so aware of how privileged we were that local people didn't get anywhere near the same care as us. And that was quite a weird dynamic as well. Just being conscious, very conscious of our privilege. But anyway, yeah, we we were always going to come home. We ended up having a 20 weeks scan and she had a clubfoot and she was very tiny. And then there was abnormality with the uterine artery, the flow something, I forget all of the technical terms, which I think is this like, sort of defence mechanism because I can't hold it all in my head. And, and that's okay. So yeah, we knew that we needed to come back, but we still thought that we'd re,turn. So we left, our left all of our apart from a suitcase of stuff, we left all of our belongings, furniture, the cat, flew back left my job didn't say goodbye, really, apart from just see you on on the other side. And most people who are pregnant would return anyway. And then and then come back to Tanzania. So we just assumed it would all be fine. And then it got to Sylva was born. And there were more and more complications in the UK, and we realised that we weren't gonna be able to go back and we made that decision, which was actually a huge relief. When we did decide that we were going to stay stay here.

So yeah, it was a big shake up. I think it's Eddie Izard who's got a quote from one of his standup gigs, where he talks about the Etch A Sketch end of the world, like, do you remember the Etcha sketch where you turn upside down? You shake it, and it just somehow felt a lot like that and that it didn't necessarily have to be a bad thing. but just everything suddenly was cancelled. All of my career was suddenly, a stop was put to that well had just trained to be a teacher. And he had to put a stop to that. Freddie was about to join the school, you know, we were getting him ready to go to his first year of school, and he couldn't go. So it was like, suddenly everything was thrown in the air.

But then, the way we managed to deal with that was just thinking about it as like a new opportunity to draw a different picture, a different picture. So yeah.

Lauren Fenton 15:31

And how was it when Sylva was born? So you you knew some things but what was going on? And how did you cope with that at the time?

Camilla Cook 15:40

The time from when we flew back to the UK, when we flew back to the UK to when she was born, let's say three weeks after she was born, that was the most stressful point. And I actually think it is going to be the most stressful point of you know, the rest of our lives because it was really intense. From the 20 week scan. It was a bit tricky, but we were still kind of calm about it. And we didn't, we couldn't find out any information about what was going on until we got back to the UK anyway. But when we flew back from that period, until she came out of the NICU, which was three weeks after she was born was really, really stressful.

Because well, first of all, the quarantine hotel was a fun bit. We flew back to the UK and then had to stay in a quarantine hotel for 11 nights, which meant that we were basically stuck in a room apart from 15 minutes a day, when we were allowed out I was pretty pregnant, Freddie was three and I was just this kind of almost like funny, like a, like bad in a comedy way. It was just so extreme that we were able to laugh at it. And actually, you know what the conclusion that I'm, I've drawn from all of this is like the silver linings are there. Everywhere. We had as a little family of three, three and a half. Some of those times were actually really fun. And we just had, we had to really make an effort with Freddy and our family were really good and sent off stuff that everyday we had little parcel to open and it was a bit of Lego or is a bit of it was playdough or whatever.

So we just had this time together that we wouldn't otherwise have had. I mean, some of it was really hard as well. But we had food delivered to us, you know, we decided we had to pretend we were on a slow boat from Tanzania, and that it would take 11 days to get back anyway. And we'd have a little cabin anyway. And we just talked about what the journey would be like, otherwise, if we weren't on a boat. Anyway, so then I wasn't registered with the NHS. So that was a whole crazy headache, where I couldn't get an appointment. I didn't know what to do. Luckily, my my health insurance was still going from my work. So we had to get a private health clinic, go into a darkened room and be told that yeah, probably our babies, you know, we're going to be going to be pretty poorly and have to have an amniocentesis. It was all just completely insane and extremely stressful.

We didn't have anywhere to live. Having said that. My sister was an absolute hero. She has a little Airbnb, the end of her garden, which is actually it's a room with a little bathroom. And she basically does have that for what ended up being six months. Wow. So it was during that time was pretty crazy. And then somebody recommended me, woman who is amazing midwife, she has a private midwife. And again, we were able to get that on insurance and she completely changed everything. And she taught she worked with us from probably about 30 weeks until Sylva was born. And after that, and she was literally the lifeline. She was incredible. Her name is Angie and she was literally an angel she can more amazing for us. And I'm somebody who needs to fix problems. And so, you know, I was going out I got like counselling straightaway. I found Angie, I was like trying to read things and find out about things. And actually, the only beneficial thing was that that really was was Angie. And she came and hung out with us a lot and got to know Freddy and got to know my family. And we're just so helpful.

Lauren Fenton 19:24

When Sylva was born, were there surprises then you obviously knew about some of the things that she had going on with the club fee and being small. But what was apparent when she was born? Was that a shock to you? Were there additional diagnoses that were given early on?

Camilla Cook 19:41

Yes, so they were worried about her size, so she was 2.2 kilogrammes when she was born. And then there were various things going on. And actually oh I'd forgotten one thing we'd gone to London to have a detailed scan of her heart and her heart is unusual, in the sense that it has she has a bilateral superior vena cava, basically two veins where there should be one. And then she has a hole in her heart as well. So we knew that there was going to be heart issues. There were other various things on the scan that they couldn't quite make out. They were worried about her hips. Yeah, so they're just loads of things. And then when she was born, she had low blood sugar. And they were a bit worried about that. I you know, what, as I sort of implied before, a lot of it, I can't remember,

Lauren Fenton 20:29

Do you think it was a cope coping mechanism.. I feel like I'm a bit like that I can't remember the details from back then because I had to sort of blank out there was so much information and so much trauma that you're going through that you just kind of have to it's some of it is gone. And that's maybe okay.

Camilla Cook 20:48

I don't know if this is the same for you. Like, the speculation that was going on then hasn't necessarily translated into anything that we need to worry about. So one thing that helped me massively, and I can't say this enough, was that we were given a really scary hypothesis about the genetic conditions you might have by a geneticist in London. He was great. One of the top geneticists. Really nice woman. And I actually asked her to be specific about what her concerns were. Mistake number one. Mistake number two, was googling it on the way home, oh, my gosh, oh,

Lauren Fenton 21:26

no,

Camilla Cook 21:27

it was such a mistake, because she didn't have she doesn't have this thing. And, you know, there was just an idea. And all of the tests came back negative for everything. So there was just no point in going through the real trauma and some of the images that I saw on some of the things that I read are still in my head. And I since then, genuinely haven't Googled anything to do with Sylva, really not one thing.

Lauren Fenton 21:51

Wow!

Rina Teslica 21:52

I feel like I'm listening to my story I have on my son, similar to yours. Yeah. 20 week scan, heart condition, we thought you'd have a hole in the heart, she'd be going straight to the NICU for surgery, none of that shit happened. And then when she was born, there was like talks of different syndromes. And and that was one particular one that they were floating about, that I heard randomly that I then did loads of research that traumatised me. And now I don't want to know anything about her actual syndrome, like I just I don't care.

Flip from before, where you're like, I want to know everything.

Camilla Cook 22:27

That's it. And if I think about my own state of mind, in that period I described, when it was like quarantine hotel, when there was nothing else to think about, what are we doing, we're watching daytime TV and playing with Lego like there wasn't, of course, I was just worrying more and more to when, I don't know, because the doctors don't have any clue about what's going on. You know, there's no point in speculating, and that I was so stressed during that time. And since I've stopped thinking or, or as you're saying, Rina, like, we stop thinking about it, and stop trying to project into the future and trying to imagine what everything's going to be like and just living today, then I just feel a lot happier. It's like, I lived in a Buddhist country for three years, and I never quite got the idea of meditation, like it took having disabled came to realise it actually, it's really, it's really valuable just trying to drown out the noise of everything else and just enjoy what's right here in front of you. So

Lauren Fenton 23:25

Not to add noise back into that picture. But um, I guess how was Will, and you're so because your son was Freddie was three, right when you came back. So I guess we're all very aware of the potential impacts on a broader family of having a child who's sick or got a lot of medical things going on. And there's a lot of unknowns. But your three year old had also gone through Well, having a sibling, that's a big deal, new person who's going to get as much attention as, as they are potentially more in the early days, moving from his home, or what he felt was his home, the global pandemic and all that came with that. And then Sylva arrives. And obviously your concerns are going to be off the charts and you're there in hospital running tests and stuff. How was that for your son and for your husband?

Camilla Cook 24:19

I feel really lucky. I feel really, really lucky. Just a quick word about Will, my husband, we're we've just proven to be such a good team, like, so lucky. He just puts in hard work. I put in hard work. And we've balanced it out. But we just we've got this dynamic where if one of us has a wobble, the other one is able to be really strong. Let's hope that we never have a wobble at the same time because that could be some sort of catastrophy. We're quite good at sort of knowing what the other one needs and he used to take Freddie away. So one massive part of the stressful period was the was the pumping. Did you guys do? Were you pumping?

Lauren Fenton 25:07

Yes, yes, yeah.

Camilla Cook 25:10

Super fun with a really nice bras and a really nice, really nice machine noise, you know, that sort of noise that kind of seeps into your subconscious and is there forever.

Rina Teslica 25:19

I still think sometimes I can hear it. When I think about pumping, I swear to God.

Camilla Cook 25:26

Definitely. It's deeply there. Everything that goes along with that, you know, he, Will was just really good at recognising that he was never understood, would never understand what it was to sit with a machine attached to your tits in the middle of the night, having woken yourself up for a machine, like it's one thing doing that for a baby, he's thirsty. But for machines, you've got to keep going. And all the hormones are going crazy. And like, you know, he just he knew he was never going to understand it. But what he did understand was I needed support. And so he took Fred and they did loads of stuff like, we were staying at my sister's. And again, back to being lucky, we got Freddie into a little nursery, so he had something going on there. But Will used to take Freddie down the lane for walks. And they had this whole story about how these ducks had been magically, magically turned into these alpacas, because one day they saw some ducks. And then the next day, they saw some alpacas and it was like what's going on, it will turn into this magical thing and a lot of kind of storytelling, a lot of a lot of playing. And then giving funny and me time as well. Where would Windsor was born, take her away and just we sort of divided things up and aim to give him as much attention as we could. Whilst, like, recognising, as you said, Lauren, he's not going to he was never going to get as much attention and Sylva at that time. And I thought we're gonna be with her, but trying to compensate, but also getting him used to the fact that that's, that is just the reality, like, we were not we really were keen not to spoil him.

And that was, that was a bit difficult, especially because, you know, family wanted to do whatever they could and he was being given presents left, right and centre, like, you know, as a sort of compensation. We were trying to keep him involved in conversations and keep asking him how he was and you know, three it was really hard for him to articulate it and he struggled with sleep again, you know, regression and all that stuff. But we got we got through and family were amazing. Our family were absolutely incredible. Special Special shout out to my parents in law, who are heroes, really incredible, really involved really just chilled and reliable and dependable. And they stepped up they came in stayed nearby the hospital when silver was born, they were had ready and willing, I could go in every day, and he didn't feel left behind. And yeah, we're just I couldn't be more grateful for, for my the support network network that we had coming back. And it was having not really had it in Tanzania and a hands on way. That was this, like, lovely flash of beauty. Like that was part of

Rina Teslica 28:14

like a warm, big warm hug.

Camilla Cook 28:16

Exactly. And they were genuinely delighted to help because they hadn't seen much of Friday, and they really wanted to be around and same with my sister and her children and her husband. And yeah, that was just we were really surrounded by love. And it was it was incredible. And that's that's why we're we're fine. It's been that and lovely things have come out of it that we didn't anticipate at all, because, of course I was there like really thinking, you go through, I don't need to tell you guys but that morning of what you thought was going to be and I had my little girl who I've always wanted to have a daughter and we had our perfect family we're going to happen and then suddenly wasn't what we'd imagined and going through that at the same time as being conscious of how much we were relying on everyone else was quite hard because I think for me personally I was not necessarily repressing it. I was conscious of not draining everybody else have what they have their energy by talking a lot about it. And on reflection, I think there's maybe something that maybe it's like deep trauma now that will come out at some point but I was I did feel under a lot of pressure trying to balance managing it for us and our family.

Whilst also being conscious we were living in my sister's house. I mean, she was cooking us meals every day and she really just took us in for six months. And her amazing husband and he's disabled so that was just you know, there's more and more layers to it. My sister just was just recovering from breast cancer herself. And just you know, it was this kind of crazy time.

Lauren Fenton 29:51

Wow. Did you miss because it you say managing it and you know, you referred earlier as well to know You know, that feeling of this is not what I imagined potentially as but you? I guess, alongside that your life had completely turned upside down in terms of your job and where you were living? Did you miss Tanzania? Or was there any grief for that side of your life that had obviously taken a, a very different time?

Camilla Cook 30:22

I mean, yeah, I used to go to the beach every day!

Lauren Fenton 30:26

sounds lovely.

Camilla Cook 30:28

And this again, was this, the other like, narrative that was going on in my head was how privileged I was and how I shouldn't be, you know, I've got a baby girl, lots of people can't even get pregnant. So I didn't let myself I wasn't letting myself process it emotionally, I think very much. Because yeah, we've gone from this absolute paradise situation where everything was was easy. Like, you know, I had my job, my career was going where I wanted it to. I really enjoyed the school that I taught, I really love my colleagues, I miss my friends I... God I really miss my friends. Still, I haven't seen any of them since apart from two of them came to, to Brighton. And that was amazing. But you know, these best friends suddenly just poof, gone, didn't even get to see them to say goodbye, my students, I didn't say bye to my students. And that was really sad. Yeah, and a lot of it a lot of the lifestyle I miss little things that we joked about, you know, packing up and moving from one country to another is a massive headache. And we just basically didn't do that. So we sort of our lovely friends packed some of this precious stuff, and the rest we just sold and made a bit of money out of it. You know, it doesn't, it didn't matter. It's amazing, what it's taught us about what kind of material objects just don't, like, don't really matter.

Lauren Fenton 31:43

Can we sort of fast forward a bit then. So you still haven't got a diagnosis for Sylva? What's that been? Like? Because you, you talk about not googling or not kind of overly fixating on that aspect was have have you? How's it been not having a diagnosis? And is that something that you've been pushing hard for?

Camilla Cook 32:05

It's been a really interesting experience. Because I kind of implied earlier that I am someone who likes to fix problems, and not knowing what the problem is, is, was initially kind of challenging, but now I actually wouldn't, I'm not that bothered, like, if anything, when we get a diagnosis, it will then mean that I have something to type into Google. And therefore I would, you know, the anxiety might rise a little bit. And we had it was, it was a weird one, because we were getting all these negative results. And that's a weird thing, like, actually hoping for diagnosis of something that you can name, even if it's something bad, so that you then have this you can make a plan. It's such a weird experience, when actually should be joyful, responses are coming back negative.

I think that very quickly, I we were confronted with the fact that you know, medical knowledge is limited, and that having gone through life thinking that everything is fixable, if I've got poorly, there was a medicine to mend whatever it was, you know, that's now been thrown out the window. And, you know, we had it yet another weird thing was that the geneticist in London took the sample from my amnio to run whole genome sequencing, because I think it don't need just been allowed on the NHS or something that just was sent off. And then I don't know what's happened. She basically ghosted us completely. So since then,

Lauren Fenton 33:44

Oh God

Camilla Cook 33:46

Sylva's now two. That's over two years, not even a reply to an email. So we sort of gave up on that. And then our paediatrician in Brighton was like, yeah, maybe we should do our own our own one. So we have just redone that a couple of months ago. But I'm not really anxious for the result. I don't. In a way I'm slightly I'm anxious to get the result, if that makes sense. Yeah.

Lauren Fenton 34:09

How it might make you feel to have a result afterwards. It's really interesting because we conversely, Bea was diagnosed with 18q deletion, her chromosomal abnormality when she was two weeks old. So it was like, really early on when we weren't even expecting her to get diagnosed with anything. So we were just constantly told it's nothing. It's nothing all of these things that we've noticed about her this breathing episode and her time, her stint in NICU, it's not related to any I mean, it was our expectations were managed and completely the opposite direction. So it was a real shock that there was this slight label diagnosis.

But then recently, I was just thinking we had a Bea sees an endocrinologist, and she was talking about some characteristics that she's noticed in Bea that are similar to another patient of hers. And she suggested that we go and test for this Other genetic mutation, like I just like, Yeah, whatever, you know, kind of easy, breezy conversation. I wasn't really focused on it. And then I got a call from the geneticist at Great Ormond Street say, Yeah, we're booking you into this other run this other test. I'm just like, What the fuck? It's similar to you. It's kind of like Bea is Bea, and I'm not sure this is going to tell me anything that I need to know about her. And it's that thing of gosh, there's so many unknowns in the medical community. And I always feel like and it's no, you know, I think she's great, this endocrinologist. So it's no disrespect to her. But I do feel like this is like a medical curiosity to her like there's something academic that she's interested in, it's not really going to make any difference to the Bea or to her family, or? Yeah, I don't know, maybe I'm being overly dismissive. But it's really, I think what you've described in terms of not being really anxious to get a diagnosis is, is probably a very healthy thing. Because it's about it's about Sylva and who Sylva is. And actually, you don't need a set of criteria or a label to be comfortable with who your daughter is. Does that sound right?

Camilla Cook 36:13

Sounds exactly right. And actually, I feel quite proud about the fact that we both will, and I feel like that, like I didn't expect it. I'm quite proud of I think it's quite, it's evidence that we, we love her, and we don't need to know what the future holds.

Lauren Fenton 36:29

Yeah. But that's not to say that someone really desperate to get a diagnosis isn't, you know, doing that for the right reasons as well, because I, you know, there are definite pros to that, you know, in terms of opening doors, or, yeah, just getting understanding. But yeah,

Camilla Cook 36:44

If we get the diagnosis, and then we find out that we can help her with it, then we absolutely will be delighted about that. I think it's just that you know what it is, it's that I don't want to have this inevitable relationship with the medical profession, I don't want it to be that I'm trying to get something out of them, that they are not going to be able to give me because that creates stress. Like there's no way they have this incredible, vast knowledge that is so far removed from what I know. They will tell me what they can they will do what they can I do believe that as much as the NHS is stressed, I do really believe that they're wanting to help. So I kind of have just handed over responsibility for worrying about all of that stuff to the people who know, who are quick to worry about it. And absolutely those those parents can

I was just going to ask you, Lauren, like, if a minute ago, you implied that you were not necessarily that happy about the test going ahead? Would you ever ask for it not to happen? Like, I don't know, I'm in a bit of a conflict at the moment that whether I'm a bit too deferential to the doctors, and whether I just let them do their thing, and whether that there's a balance to be struck between the way that I trust them, but also the way that I should, as a parent, take some more responsibility. Yeah. I'm just slightly in denial. And I'm just hiding from reality like, and I had, how do you feel about if there was something you didn't want to happen? Would you be able to say no?

Lauren Fenton 38:19

Well, so Rina, is my guru on this because Rina is like, so good at pushing back. And we've talked about it a lot the things that she she takes control. And I think I am definitely, you know, take control in a lot of ways in life. But I am definitely also quite deferential to people who have a profession that I don't know anything about or say in the medical profession. But I think now, I would say no, I don't know if I want to say no, because I'm, you know, that's a discussion between my husband and I, I probably need to do a bit of research on this specific gene mutation to know whether I want to get it Bea tested or not. But I would definitely feel more comfortable these days saying no, I think it's a tricky one. Because, yeah, it comes back to I think, what difference is it going to make? And I think that you asking that question of yourself with your child, as you go through all of these appointments and medical interventions is really important.

Bea has a hearing loss, and she wears hearing aids, and she has a really good wearer hearing aids and that constantly the conversation comes back to like, would she have some sort of an implant of some description, not a cochlear implant, and there are different surgery options you could have, and we keep kind of coming back to what's the benefit? What actually, you know, she's a really good user of the aid now, like, is this going to massively improve her ability to hear and if not, then should we wait till she's older when she can have more autonomy, you know, more of a say in that or should we do it now? You know, I think I think it's good to question and not just take things on face value. And like I say, Rina is the best at pushing back and questioning, I need to get better at that.

Rina Teslica 40:08

I think for me because with Lua was so fragile when she was born, that and I was really young. So I didn't, I full on trusted the doctors to do what needed to be done to get her to a place where I could bring her home. That was like the main goal. But then I think we'd been burnt by things, and not necessarily massively bad. But you know, like she had a tracheostomy. And we still to this day, don't really understand why she needed to have a tracheostomy, which is such a life changing surgery. And that's then caused her to have more issues. And yes, it's got her to the point where like, she's happy, healthy, eating. It's like that balancing act. And I think once we got to that point where we were like, well, then why? What when nobody could answer the simple question of why does she need it? It got me thinking? Am I trusting these doctors to give her the best outcome? Or are we just taking the quick and easy route? So now I question everything all the time. If it's not beneficial for her. It's a no. And that's across the board with like therapies with professionals that don't really need to be involved in her life to anything I am much more. I lean more towards the No. And I need factual proof and real understanding before I agree to anything, which I think I can be that annoying parent, I think sometimes when I walk into a consultation refer him they're like, Oh, God, it's this one. She's gonna ask a million questions, and we've got to be on the game.

Camilla Cook 41:55

Yeah, but that is just yeah, that doesn't matter. Lua's the one that matters. And that's the thing I've got to get better at, I definitely, definitely need to. And one. One thing is the physios have given us a chair, a special chair for her. Which I don't really see why I don't really understand why. And I remember when they wheeled it out. And they were really pleased that they had managed to secure the funding for it. And they showed it to me, and there was someone there, who was literally a salesperson not trying to sell to us, but he was there showing all the features of this chair. And I was like what do you know, my I suddenly felt incredibly sad. And I didn't really understand my emotion, and I started crying. And they didn't know how to handle it. And I didn't know how to handle it. So I didn't know why I was feeling like that at all. It was just this it was just so medicalized. And it was, you know, there's not been any concern about her, she can sit up, you know, what is it this this chairs for? Maybe we need a chair and when she needs a chair, and when I understand that, this the need for the chair, then give me the chair was great, and how amazing. And I was sort of thinking like, initially I asked them to explain I just did it, it just feels like a big change. And I don't really understand why she needs it. She's sitting up in the just the IKEA antelope, you know, the one everyone has was sitting in it. So why does she need the special one and they they told me you know, you can get set her up and down and the chair sits in the corner of the room and I basically just bottled it because I just thought this is a really expensive chair and we've been given it and like we've got to feel grateful. And I reflect on that. And I feel a bit like I should really have vast a bit more. So hopefully I can absorb some of your, your

Lauren Fenton 43:36

it's not it's not too late.

Rina Teslica 43:38

I've said no to that chair. I think it's the one that goes up and down. And it's got the tray and it's got thing for the feet. Yeah. Yeah, like we had that same chair. I said no to it initially. And then I agreed to it because she needed it. It was similar. Lua's one is like wooden and then it had the thing that you pour on it goes down. And then like she outgrew it and we just like never used it. So I had this whole back and forth with her physio, they were like, No, keep it. She needs to be using it blah, blah, like, why, what, why? And I got them to take it away. And she now has like one of those like Bumbo like plasticky ones that will sit on like, on a normal chair. And I think there was like two things. I think when you see something that's so medical, it's a big shock and I think that's an issue that we probably have with ourselves I certainly had it where it's like this is to medical for me she doesn't she's not that medical, she doesn't need it. Then it's the acceptance that actually Yes, she does. And then it's the the like seeing because it's your child you see them more and you see how much they develop more so than a professional so you know when they're ready to move on and then it's that fight of she's outgrown it. She doesn't need that she's gone past that she needs something else. So it's a mixture of a lot and I think you have to really trust yourself because ultimately there's that saying: You know your child best? Like you know what's best for them? So

Camilla Cook 45:04

yeah, but then there is also the other flipside. So I'm thinking for myself, you know, in reflecting on is this just the easier route for us like we've had this conversation moving from the NG to the peg. And there is no doubt that Sylva was really struggling with reinsertion, which we were having to do every few days. So that was an easy win for her, we wouldn't have to shove a tube down her nose, often. And then we also think that and know that if she is able to feed overnight, and we can see it and she then has the day free, then that is the ultimate aim. And therefore it's worth working for. So we've come down on the side of it being good idea. But then I was thinking, hang on, is this so that I can sleep? Am I really wanting this for her? Because she can then it makes our life a bit easier? And again, it's kind of like question of right now she's had the peg She's She's vomiting to more than she was before. So it hasn't helped and I'm feeling like, oh my gosh, she's got a hole in her stomach, which we decided would go in and, you know, it's, it's this real conflict that you do have isn't in your own mind about what what is that you're so responsible for a child if they're responsible for a child anyway?

Lauren Fenton 46:18

I think your own life being easier is also valid, I think, yeah, that that is that has to come into it as well. Because if you get more sleep, you're going to be like, without sounding really cheesy, you're gonna be a better parent to Sylva and you know, I think it's, it's completely valid. You as parents having, you know, we could we could all kind of just be complete slaves to our children 24/7 We would completely burn ourselves out. It's that's not realistic. And it's not what's gonna be in their best interests longer term, because they need parents who have slept. And

Camilla Cook 46:55

yeah, you're right. And I remember your one of your first episodes, I think it was Genevieve who said that self care had become a much bigger priority for her. And that really resonated with me. And I've had that in my mind, because it doesn't come. It doesn't come that naturally. But it's really important, because I know that I'm better at everything. If I'm feeling good. I'm still like, definitely making bad decisions when it comes to, you know, exercise or loads of beers.

Rina Teslica 47:22

We know which one would be the one that we would pick, but

Lauren Fenton 47:28

I think I get both do a do run and then have a beer. So how is life how it's silver and family life now?

Camilla Cook 47:38

Life's really good. And it's, you know, some of it is really hard. And I'm also I'm conscious that we're in a nice little sweet spot that she's progressing. She's still teeny, weeny. She's way below the percentiles, whatever they are. I've tried on

Lauren Fenton 47:54

Percentiles schmentiles!

Camilla Cook 47:56

And we don't have any answers. You know, she's just now she's, she's been diagnosed as having a little bit of hearing loss. But she's stuck. She definitely can hear she's nonverbal. She's not making any signs of becoming a schmuck. She makes noises, which are hilarious and very sweet. We enjoy those. So she there's lots of enjoy about her. She actually isn't very hard work. Because she's just started crawling. We raise you're really happy about?

Lauren Fenton 48:23

Wow, that's amazing.

Camilla Cook 48:25

It's really good. And she has, yeah, she she's happy when she's happy. She's still vomiting a lot. That's just, you know, part of life. But yeah, we're conscious of the fact you know, other parents with kids similar age, are doing things that we can still do with her. And I am. We're sort of surprisingly happy. And I know that it may not last, it's kind of a weird, like trying to... knowing that things might get harder is something that I am constantly trying to not think about. Because right now, you know, we live in a lovely flat. We've got right in the middle of town, we go out to the beach, and we just bought one of those waggon and things that people have at festivals. And we just put the kids in loads of stuff and go like, yeah, look at the sea and just play and Freddie is super happy at school, fantastic school. And the lovely thing about the school is it in his class, there's a boy who's also got an undiagnosed syndrome, who they are absolutely brilliant with from what I've seen, and that's minimal, but it's been really lovely, reassuring thing that I can see Sylva's future and it's a supportive one. Brighton generally he's got loads of services, we definitely pick the right place to move to, you know, it's kind of it's kind of nice. It's really nice.

Lauren Fenton 49:42

We like a happy ending.

Rina Teslica 49:46

That's gorgeous.

Lauren Fenton 49:46

What do you think, been the most helpful thing to get you from like if you had to pick something from where you were in the initial stages of just rabbit in headlights dealing with everything that was going on to now what would be It's hard to pick one thing, I guess. But is there anything that stands out?

Camilla Cook 50:05

Just as cheesy as it is just remembering how lucky we are and feeling grateful for that that's been a huge one for me that there are so many, you know, count your blessings, that phrase that didn't really mean anything, but just really does now that there's so much to love about everything. And especially because everybody's struggling, like, it's, I don't know, unfortunately, everything's been turned upside down. And for many people because of cost of living, and that I don't know, the fact that we've got a little family unit. And we're all pretty happy as feels like quite a good thing and easy thing to enjoy. If that makes sense.

No Googling, as I already mentioned. We talk about things a lot, we play, we do a lot of playing, and having a silly time, seeing friends. Definitely enjoy being back in the UK. And again, it's because we, we haven't had we hadn't had that for the first five years of our marriage, we lived in Thailand. Now being back here, there's still a novelty about being here. You know, just even Amazon the fact I can get something from Amazon or I can go and get. We can go dancing to music that we actually like, or we can see me live music or our friends are just down the road. I don't know, there's so much that's quite novel still. And also, camping holidays. That is the thing. So we haven't we have no money extra extra money at all. So I did invest in a Bell tent, which was secondhand. And now that sounds like it's heaven, actually exploring the UK, we were jetting around all over the world before and, you know, especially because we shouldn't be doing that because of the climate crisis. Now it feels like we're just, it's serendipity. We now can't do it. But we actually really enjoying being in a field or a forest. And I don't know, just doing English things quite nice. Yeah.

Lauren Fenton 52:00

Do you think you'd ever travel again? Want to go abroad again, and work abroad?

Camilla Cook 52:05

Well, it's a good question. I love teaching the IB, which is the International Baccalaureate and not many schools teach it, you have it as part of the syllabus in the UK. And I really, really like it. Not that it's perfect, but it allows teachers to, especially English teachers, which is what I am to teach in a way that suits them and seats their students. And that's what I want to be doing most in the world and international schools are where it happens, where they choose that as their curriculum most.

So I think if we, if things settle down with Sylva, and we know we can manage it. Them Yeah, we will consider when Freddie is ready to go to secondary school. At that point, we might go to an international school, whether it's in Europe or further afield, it would have to depend on how Sylva's doing, but that's that would be really nice, because we'll got this teaching certificate. And he's an amazing teacher. And now he's back to copywriting. Because we can't afford to have him on a starter teacher's salary, you know. So that's, that's one of his streams that has been squashed a bit by the situation. So it'd be nice if we could go back to a good school where we were supported, I think we're sort of daydreaming about Scandinavia, where there's really good, like social care. That would be fun.

Lauren Fenton 53:25

I see an uprooting rerouting part two, we'll talk to you live from Scandinavia or something. That would be amazing. You kind of answered it. But if you think of yourself in that quarantine hotel, worrying about baby's future and everything that was going on and life is just in a complete spin. If you could give yourself some advice, or tell yourself how it was going to be okay, well, would you say?

Camilla Cook 53:53

First of all, reassure myself that all three of us would be and Sylva actually all four of us will be strong enough to handle it. We all of us have, like shown really good resilience, I think. And in the face of challenges, we've we've all of us overcome them. And that that in itself is a really valuable experience. Like, as a teacher, we talk a lot about grit and how you can how you can develop grit and perseverance and determination in students. And it's not easy to do, because you can't really manufacture challenges very easily as a teacher like right now, I'm just going to not give you everything you need to be a happy student. See how you get on. Like, that's not very ethical. So it's really hard to do that. And I think the benefits of overcoming challenges for all of us has been a real positive. And that yeah, knowing that we weren't all going to fall to pieces would have been nice.

And another thing is that Sylva just because she's disabled doesn't mean she isn't happy. I don't know. I just sort of imagine it was all this terrible catastrophe and she would be a really miserable person and you She's got a really naughty sense of humour. She's really, she finds things really enjoyable. And really, she's really happy. And that just because she's different from Freddie, it's doesn't mean that she's not as happy as him. Another thing is that I would love her as much as I love Freddy, because I don't know about you guys. But that was a tricky one. Like, I was suddenly thinking about, uh oh, am I gonna just put all of my hopes in this one boy? And how on earth is he able to, we'll be able to withstand that, you know, that's far too much to put on a person. And it's also such an toxic way to think about your kid. I don't know, it just that was I grappled with that for quite a long time. And I feel like we've passed that now. And yeah, just I don't know that. Ultimately, being disabled is not an irredeemable catastrophe, and that the world needs to change. This is such a cliched thing, but, you know, the fact that they just have disability pride, and we need to be working hard on on changing cultural views, I think and if I don't have time for it, like, you know, I hope sort of galvanise over what you guys are doing is great, you know, just sort of trying to educate people and, and make people feel that it's, it's not a disaster. It's just It's hugely challenging. It's knackering. It's hard, it's really emotionally draining.

It's also funny and heartwarming, and like it invokes pride. And it's sort of, I don't know, there's the flip side of that there's a light side to the dark. And that's the same, it just looks different with other kids. And this is what I'm doing. So far. My armchair activism is very minimal. I'm sort of following a lot of people on social media and just feeling super inspired by the the attempt to shift the narrative from, oh, dear support you while you're in a wheelchair, for example, to I'm in a wheelchair, deal with it, you know, that kind of thing. Over grows up in a world that shifts to to that, and I have hope, but it does require a lot of a lot of work. I think that's ultimately how I feel about...My conclusion is that there is hope and it's going to it's going to be a bit of hard work. Thank you for your podcast.

Lauren Fenton 57:29

Well thank you for sharing your story and beautiful. Yeah, it sounds like you're in a really good place. And I tell you when I'm next in Brighton, watch out, because I gotta be like messaging you that I'm coming down. Yeah, I would really love love to meet Sylva and in real life. She's gorgeous.

Rina Teslica 57:50

So to end the episode, as always, we're going to ask our guests Camilla. What her f**king normal is so Camilla. What is your f**king normal?

Camilla Cook 57:59

My fucking normal is being really pleased when my daughter vomits in front of a medical professional. Because they get to see that it isn't normal. It's not just reflux. Secondly, because I can immediately get the measure of them as a person. And I don't know about Yeah, I have very strong feelings towards medical professionals. I basically either loathe them or deeply fall in love with them. The way they handle her being sick is a good measure. Obviously. I wish that she isn't isn't puking everywhere. But also in a doctor's office. I don't have to clean it up. So it's a

Rina Teslica 58:40

win win. Win win.

Lauren Fenton 58:41

Yeah, triple win. I got it. I love the fact it's a barometer as well.

Rina Teslica 58:47

Amazing. Oh, well. Thank you so so much, Camilla Cook for being on our podcast. Yeah.

Camilla Cook 58:52

Thank you so much for having me. I really enjoy it. It's lovely to meet you both. Yeah.

Lauren Fenton 58:59

Thank you so much for listening to the fucking normal podcast. We love making this podcast.

Rina Teslica 59:05

Yes, we do.

Lauren Fenton 59:06

Haha We are part of a much bigger team, almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences.

Rina Teslica 59:20

So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at fucking normal podcast.com That's f k ing normal podcast.com you can join us on Facebook and on Instagram at fucking normal underscore podcast. That's fkingnormal_podcast. You can get all the links and more information in the show notes below.

Lauren Fenton 59:43

So thanks so much for listening all the way to the end. We'll see you next time.

Music to play out...

Transcribed by https://otter.ai

Episode 20: ‘i am because we are’ with dance movement psychotherapist Juliet Diener

~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Lauren Fenton 0:01

Okay Rina, you seem stressed what's going on?

Rina Teslica 0:05

Do you ever feel that parenting a disabled child is chaos like absolute paperwork chaos? There's just so much admin. On top of caring for your kids. It's like, I'm my frickin daughter's PA.

Lauren Fenton 0:20

Ah, yes, you should try the new Hibi app.

Rina Teslica 0:24

An App?

Lauren Fenton 0:26

Not just any App, it's disabled parenting mega PA organisation, so you can schedule appointments, have reminders for your medication. Have all of their medical notes and letters in just one place.

Rina Teslica 0:40

Hang on. Spell this out to me again.

Lauren Fenton 0:42

Hibi. H I B I. It's a Disabled Parenting organisation App. I wish I'd had it when Bea was younger. It gives me a sense of control over well, the uncontrollable

Rina Teslica 0:54

Hmmm, sounds intriguing. Who doesn't want to organise disabled parenting chaos one notification at a time?

Lauren Fenton 1:01

Haha. Yes. It's my new sidekick. Side kicking the shit out of disabled parenting organisation.

Rina Teslica 1:08

That's the least catchy strapline I've ever heard Lauren.

Lauren Fenton 1:12

Yeah, okay, fair enough. They won't want it. But if you like Rina and I want to give it a go, you can download hibi for free on The App Store now.

In this episode we talked with Juliet Diener, a dance movement psychotherapist, and it's a slightly different episode where we touch upon Juliet's own personal story, but we also really spend a lot of time picking her brains on what makes her organisation (the organisation she runs called, I Can Dance) so special and what it means to really truly build a community around the space of disabled children and their entire families. I really love talking to Julia. Well, how about Rina?

Rina Teslica 1:58

I loved it. I love Juliet anyway, having known (we love you, we love you). But I think it was just so interesting because obviously I know Juliet just through Lua and taking her to the I Can Dance but actually speaking to her and understanding her ideologies about parenting a disabled kid, Lua's needs are so great and wherever I've taken her even school or like getting on to the school transport system, whatever has been such an issue because of all of her expenditure and all of her medical accessories. Yeah. And it's always been such a "foo faa". But with I Can Dance and with Juliet in particular, it's, I took her in, they kind of looked at her and looked at her knees were like, Yeah! that's absolutely fine. We can get everybody trained. It's not a problem. And I was just gobsmacked that it was so seamless, so easy. They weren't terrified of Lua or her needs. So yeah, it's incredible what they do.

Lauren Fenton 3:00

Yeah, I agree and Juliet herself I mean certainly chatting with her this episode, it really reminded me of like the importance of that human touch and interaction and pf being playful and musical with our children. It's something I try to be better at, with my kids. And also, she talks about learning to just be not necessarily do and meet your child or young person where they are. It's not always easy to remember to do that. But so important and powerful to be able to do that actually.

For ourselves as well, I think, yeah, as much as the whole dance psychotherapy experience is amazing for children. I think movement is really good for us as well. It's like freeing. That release like to you know, dance around your kitchen or your living room or whatever. So you can reminisce about you know, the more carefree days that we once had.

Rina Teslica 4:02

Raving at the club at 3am.

Lauren Fenton 4:04

Ha! You maybe. Oh, so I hope people enjoy listening.

Rina Teslica 4:11

Yeah, enjoy!

Lauren Fenton 4:29

This is The F**king Normal Podcast. The cheers, tears and Friday night beers of parenting disabled children.

Rina Teslica 4:36

I'm Rina

Lauren Fenton 4:37

And I'm Lauren.

Rina Teslica 4:38

And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories and chat about the things that we've learned and are still learning.

Lauren Fenton 4:53

Prepare to sometimes laugh, sometimes cry but hopefully leave with a shot of optimism in your arm. And don't forget. We are talking from a parent's perspective. We would never presume to talk on behalf of the disabled child or adult. So expect bad language and quite frankly ome brutal honesty

Rina Teslica 5:12

because really what the fuck is normal anyway?

Lauren Fenton 5:28

Juliet Diener is a mother, an academic and a dance movement psychotherapist, she is founder and CEO of the charity I Can Dance with a background in Special Educational Needs teaching and dance Juliet founded I Can Dance in 2006, with a desire to build an inclusive community where dance was accessible for all

Rina Teslica 5:50

Subsequently influenced by her own personal journey. It's a joyful and inclusive place of community that whole disclosure, both Lauren and I's daughters go. Juliette is also currently completing a doctorate focused on the I Can Dance approach. Hello, Juliet.

Lauren Fenton 6:06

Hi, welcome to the podcast.

Juliet Diener 6:08

Thanks so much for having me

Rina Teslica 6:09

Can we can start by jumping straight in talking about what is dance movement psychotherapy. I'm intrigued because I have no clue what that means.

Juliet Diener 6:19

Well, I think what's so amazing about it is that we're living it every day. We are using our bodies to understand and experience the world. And in a way we create our own patterns, our own ways of being our own creative responses to what it is to be in the world. And dance movement. Psychotherapy is about relying on how the body receives messages, how the body understands what it is to be in a relationship, how the body explores being in the world, and how what goes on internally manifests itself through the body, and that we explore that a little bit more with being creative in the body, and that it is about exploring it through dance, but dance movement, psychotherapy doesn't always look like you're creating a dance, that we have a dance through life and that's very much what dance movement psychotherapy is about.

Rina Teslica 7:08

Oh, that's beautiful. Dancing through life.

Lauren Fenton 7:10

Yeah, we should all dance about through life. Anyway, shouldn't we we should be thinking of life like that.

Juliet Diener 7:17

That's how it starts. Think of our children. Every child, no matter what they explore through their bodies, that's how they they begin in life. They it's all about a mother's touch, a mother's gaze. A mother's help being held by a mother. And so often as we become adults, or as we, what we see a developing in the world, we become more cognitive. And we focus just on the thinking and the words. And I think we then sort of forget how valuable it is to work through our senses or through the body as a means and as a tool of understanding the world around us. So we're doing it all the time. It's just not forgetting that it's there.

Rina Teslica 7:58

Tell us a little bit about I Can Dance and the process of that and why you started it in the first place.

Juliet Diener 8:05

Well, maybe to understand why I started I Can Dance, I can tell you a little bit about my journey. And I suppose since I can remember, I have danced since I can remember, I explored the world through moving and creating. As my family tell me I used to sort of climb up on the table and dance for everybody and insist that they watch them. So I was obviously a drama queen and my mother love to dance. And so she took me to dance. And it just clicked something just clicked for me. And so dance didn't just become a hobby, it became my focus and I then trained specifically in dance and then to very formalised training process. So I've really realised that dance was what made me feel complete. Dance was what made me feel who I was. The dancing world is also very painful, then it can be a very challenging one, because the dancers are focused on, traditionally anyway, perfection. And I then also realised very quickly that my bodies isn't perfect. My body didn't necessarily do what it needed to do always. And then with that, which I realise became very much part of my story. I then continued to do all sorts of different kinds of dance and then realised okay, I wanted to take dance more into sort of teaching and learning and educated beyond performing, and then trained as a ballet teacher. But alongside that I also then did a degree in teaching. And because I've always wanted to teach and so I trained as a school teacher, a mainstream school teacher. I taught in South Africa, and then sort of came over here. And then I was teaching in schools, and then started exploring more special education needs schools and expanded myself more and more, but then would still be teaching ballet in dance schools in the evenings and on the weekends. And then as I became more involved in SEN and I was a SENDco for a few years I realised there was something I didn't know something about living these two worlds. A world that was creative and exploratory and using my body and a world that was very much about targets and sitting at a desk, and working with kids. And it just didn't feel quite right. And also realised that a lot of the young poeple I was working with had real emotional barriers to - they couldn't even get into the room, nevermind me start to trying strategies with them. And that's when I discovered dance movement psychotherapy.

And that for me brought all my worlds together. It's like, oh, okay, there's a space and you can use movement as a tool, the dance becomes this opportunity. And it's an added strategy. And it's a way of connecting on the inside, before we start thinking about the outcome. It's more process purpose. So then I had all these various hats. And I've sort of moved between these hats. And then I think I sort of evolved for me as I was exploring these various hats, I thought no but what does it look like it all came together? And that's very much what I've developed at I Can Dance. This way of thinking, both yes, we need to think about how are we learning, but then using the tools of and creativity of dance, but then thinking about in order to do that, what's going on internally for this young person? And so really thinking I've sort of plussed as the well being creativity and learning, which is the approach of our hearts and bodies.

Lauren Fenton 11:24

Just to give those who don't know, a bit more of a feel who is it for?Who are the young children and young adults that are involved in I Can Dance? And what does it encompass?

Juliet Diener 11:34

So I founded I Can Dance 2006. And really, it was this idea that I felt, I absolutely believe in the power of dance and believe it or not just as this great fun thing to do. But as ive named as a tool as a strategy, a way of connecting a way of being a way of expressing. And because I at that stage, and still, you know, had really developed my my thinking within the disability community, it became about making it possible for disabled young people, I became very aware that young people with a variety of needs just didn't have the same access to these creative opportunities. And it just felt wrong. And so that for me, the focus was creating it within the disabled community. And it's now extended and beyond. For me, I think, ideally, I started it for the child. And now it's for the family and sort of community. And that's for me what I Can Dance is about. It's a means of bringing us together, it's a means of overcoming differences, and doing it in a very creative, non-threatening way.

Is that why it's such you're so focused on like building the community? Because you realise that we don't have much of a community?

Lauren Fenton 12:49

Well yeah, I mean, it's, so we're in a similar boat. I guess that's the reason we started this podcast is community is so so important in that kind of, both for the children and also for the parents.

Was that why? I mean, I think what you said is, it initially started for the kids, but it's now gone on and developed into something much bigger than that.

Juliet Diener 13:12

Yeah, and it feels right. And I realised that the more I sort of explore what I Can Dance is, and why I started it, I realised that started with my own desire to build community. And that comes from me growing up in South Africa. And I feel that the African spirit, so much about community that actually just recently I conducted some research about, as I'm doing along with my doctorate, and one of the biggest things that came up for me is this whole Ubuntu identity, which is, I am because we are and, and that we cannot shape ourselves without being shaped by each other. And then we do not function in society as individuals that we are absolutely everyday directly impacting each other, the small choices to the big choices. And I think growing up with that African culture that we belong, that tribal experience, which for me is really important. And I am quite tribal in the way that I build community. I think also just growing up in a community that was very split. I grew up in the middle of Apartheid. I watched Nelson Mandela walk out of prison whilst I was in secondary school, and realised that I hated living in a society that was so split that it was so in an 'us' and 'them' way that not everyone was welcome, not everybody belonged. And then I saw that play out more and more in in when I was seen working as a professional here in the UK and around the world, around these, these pockets of "youre over there, and we're over here". And that's what the disabled community felt for me that they, there was this divide. And I suppose for me, it's all about what does it mean to be? What does it mean to belong? What does it mean to actually do it together. And that's my focus that I Can Dance is about.

Lauren Fenton 15:05

Wonderful. We really enjoy being part of the community. And then in terms of your personal life, so you're, you're a mother, you weren't a mother when you started, so I Can Dance. But can you just tell us a little bit more about your personal story and how that might have influenced you over the years at I Can Dance?

Juliet Diener 15:23

I think it's so interesting how we are drawn to things and never know actually, why? And so slowly, you go along, and then you go, Ah, it's like, and I suppose that for me, in many ways I Can Dance is my other child. It was something that was birthed inside of me from my beliefs and my values. And then along came my children that then became part of their story as well. So my first daughter was born in 2010. And, you know, before that, you're the professional, and you're sitting on one side of the table. And then I saw my daughter received a diagnosis of cystic fibrosis. And then I realised are now on the other side of the table. And it felt really interesting to step across, and to know what it feels like to be on both sides. And I feel that it has informed and it's helped me to shape the community has helped me to understand what it is and how we should be working and relating. We then began a journey. And that journey continued when my son was born and diagnosed as well. And I then surely understood in a way, what it's like to manage multidisciplinary teams, many EAC Plans, you know, deal with a multitude of phone calls while still trying to find your place in the world. And I remember one time, I had a sort of health provisional come to my home. And she was looking at all the things I was trying to manage with my children, and knowing I was still working sort of thing, really building I Can Dance. And she said, why don't you just stop and just just be a carer? You know, because I think that's just really what your children need. And I said,"Do you know what my children need is to see me making change in the world". And it motivated me more, I made a conscious choice, that I'm going to do this, as well as raise my children. And my children are part of I Can Dance, they've been part of it. They've been part of the performances. They are invested in it. My family's invested in it, because it's about community, and it's about celebrating differences.

Rina Teslica 17:38

wow

Lauren Fenton 17:38

That's incredible. And yeah, kudos to you for for leaning into it. Rather than stepping back when someone suggested it, that's not to diminish those parents that do decide or for for no other reason than they have to become kind of full time carers. But how do you I guess I'm intrigued. You're, you're so emotionally invested in I Can Dance, and it obviously has this now, very personal emotional tie into your own family's story. How do you kind of step away from that? Do you need to ever step away from all of that I know that I personally feel sometimes, you know, when I've dabbled with becoming a speech therapist and done other things, I've found it too much, because I've always seen it through the lens of Bea. And I've kind of thought, oh, no, I need something different. I need something separate to that. Do you ever have that?

Juliet Diener 18:37

I feel that maybe because of the type of because I'm working from a sort of psychotherapeutic frame, the people that I find myself around me are informed, they are intuitive, they are reflective. And those are the people that I gather around me. So I feel that in many ways, it feeds me, as nurtures me. Yes, it also requires a lot of personal sacrifice. Yes, there are times where it has pushed me too far. And I've needed to look at that, and it will still continue to do so. Yeah. But I feel that what I love about I Can Dance is that it doesn't feel like a job. It's, I feel that it is something I was called to do. It feels it feels that I've been given this gift, and I'm a guardian of it. And I'm helping shape it. And I think also as, as it's grown and it's developed, I realised that it's not mine, it belongs to the community. And that is what I'm constantly trying to hold that it's it's held by others its not just by me and that is what I hope will give it its sustainability.

Rina Teslica 19:53

That could also feel quite freeing because I think once you relinquish some of the responsibility and you're passing it on to the community to help build, it must be quite freeing as well.

How do you draw boundaries between your personal life then and I Can Dance and I, I guess you bring a lot of empathy because of your lived experience. But it strikes me you do that in a way without going, Oh, me, too, I've experienced that, you know that, that you you are very clear about, you know, you're keeping your personal life and story kind of personal and separate to work? How do you do that?

Juliet Diener 20:35

It's a really important opportunity for all of us, actually, I think that we should. So often when you're a professional and you have lived experience, you're often you know, you need to put it away. And absolutely, in order to be in the right place, it's professional, it's shouldnt leak into everybody else's. However, I really feel that it should be a resource, it should be a well of knowledge that you pull from, not to say "Oh, yes or no", but to say "I identify" or "I can comprehend" or "it has informed me or changed my view". And I suppose I do it like that is that it helps to look at the list, it gives me a few lenses to look through. And gives me an empathy of the journey that the families are going through, I think so often when I tried to foster in the team is that when we're dealing with a child, or we meet a family on that day, we might see them for an hour. But there is an entire story behind that hour. And they need to hold in mind what their story is, and realise that there was so much more that happened before the hour, and there'll be so much more that will happen after that hour. So by holding that in mind, I think that helps us to deal with each other differently.

Lauren Fenton 21:59

Completely

Rina Teslica 22:00

Massively. Because you're surrounded by parents who have such vast experience and varied experience? What have you learned from parents have they shaped the way that you parent your own children or how you deal with situations in your own life?

Juliet Diener 22:20

I'm constantly just so I suppose humbled is the word as I meet every family that I've worked with, for being in education for 25 years. And I'm just humbled how everybody wants the best for the child is working with the tool set that they were given. And trying to navigate a system that is not always as supported as they as they would like. And I think I always meet them where theyre - so where are you? What is your story? How is your story influenced your child's story? How do you live that together as a family? And then how do we as professionals or community members hold that story with you? And I think I would love it that as professionals people thought about that more.

Lauren Fenton 23:24

Oh, my God. Yeah. Oh, my God. Yeah. It's when it's the when everything's kind of overly, you know, made clinical or transactional with the family, you know, you come in for an appointment, or whatever it might be therapy or hospital appointment. And it's like, we just need to go through I mean, you've had this experience yourself, we just need to go through the details again. Yeah. So like relive all of that trauma or like that experience. And can you list out everything that you've been through in the last five years? With your child right there as well. So you know, I just, yeah, there's a lack of context or...

Rina Teslica 24:07

... understanding. You know, it's so funny Arbs recently (my partner) has been stepping up and taking Lua to more appointments, because I'm incredibly busy with work at the moment. And also I'm very happy to pass the baton to him. And he had an appointment last week. And he was really upset because he rocked up to the appointment and the doctor wanted the entire history. And he was like, this the first time it's happened to him. It happened to us a million times, but he was like, it's on her records. Why is the doctor not reading it before it takes what five minutes to read it off the screen to know our story to then come in at a level instead of spending the majority of the appointment talking about the past and why we've got to where we are. And I was like, Ah, this is so interesting, isn't it? So like there should be changes. They need to be doing this. Like, you're late to the party.

Juliet Diener 25:06

You see, I think that can all just be done ever so slightly differently. So if the professionals thought I need to get that history, because the reason is because I need to check firstly it's up to date. And perhaps I need to hear it from the parent. Then say so.And then also really look with empathy or look at what how your body is messaging that I mean theyre such small changes that can happen to make it a warm experience, and not a re traumatising experience. And, and I think we have a lot of times, professionals are so much so concerned about the outcome, that they forget what the process feels like, and what it feels like to be that parent sitting there. And that's where I think lived experience is so helpful. And then adapting that . And yes, I've got 10 minutes with you, because I'm an NHS doctor. And I'm oversaturated. And I'm not coping with my mental health as well, I get that. But there are still really, very gentle ways that we can bring more warmth, and more understanding into how we work with each other.

Lauren Fenton 26:24

Yeah, completely. I mean, I'd ask it's quite a personal question, but sort of, did you find that the reverse was true. So the fact that you were a trained movement psychotherapist, and you have obviously studied psychotherapy, understand it, when you face that news about your daughter's diagnosis, when that sort of landed with you? Did you feel I mean, it's certainly a bit of a kind of hypothetical question, because you don't know how you would have been otherwise. But did you feel you had a toolkit almost in your professional training that allowed you to, I guess, do deal with it in a in a better way than you would have otherwise?

Juliet Diener 27:11

Absolutely. I do feel that in many ways, I was lucky that I have been on a journey. And even just the fact that I understand education systems, and that I've done years of my own personal therapy of myself. Yeah, because that was part of my training. Yeah, I've learned what it is to talk with professionals and know the language. And so in many ways, it's helped me to really, to really be able to fight the fight that I needed to not just for my own children, but for I Can Dance, because I come from such an informed place, and then have been open to change and becoming more and more informed. So I do feel that I had that advantage, but then also used it and, and refined it. And with it as well I'm surrounded by informed friends and professional.

Lauren Fenton 28:02

Yeah, so you have a network.

Juliet Diener 28:04

Absolutely. I think I was because I think I was lecturing at the time, I think I was lecturing at Goldsmiths on their dance Psychotherapy course. And so I was surrounded by like eight therapists, so if I was having a bad day, there was definitely someone who's gonna listen.

Lauren Fenton 28:19

That's so lucky!

Juliet Diener 28:23

I was I in many ways, I was lucky. And I absolutely don't know. And perhaps that's why I place such an emphasis on the wellbeing for parents through I Can Dance. Because if I don't have that, I'm not quite sure what that would have felt like to manage all these complexities that you're going through, and then also managing the complexities and the families that I'm meeting at I Can Dance. And I think, you know, a lot of professionals feel saturated, they're not quite sure what, what to deal with a parent who comes to them that's had a traumatic experience. They don't know what to do with it. And I think that coming from this informed place has enabled me to feel that I can hold that with their parents I can hold with you. I can see you in your pain. And and then, and then you can go on with your day.

Yeah. I think one of the things that I find that I think parents experiences are so painful is that professionals aren't able to sit with them in their pain. It's very much about what medication you're and you do that that but actually when you arrive on appointments and something so raw, somewhere along the way, you hope that someone will acknowledge it. And I think when it's not acknowledged that that feels incredibly painful, and and I think it would be really interesting to explore what it is. And that's something I'm interested in is just what does it mean to care in a professional position? And are there ways of doing it with still feeling boundaried. And it's interesting because one of the values that we have as our strategy now at I Can Dance is love. And I can tell you, you don't find that in most organisations, and that you don't find the CEO of an organisation saying to the team, we can think about what it is to show love. Because that, to me is about what it is to be human.

Rina Teslica 30:25

It's so true. You've built a community around parents and I Can Dance but do you have a community for you separate from this to help you deal with whatever's going on in your personal life, thats away from I Can Dance?

Juliet Diener 30:43

I do, I have lots of very important special, loving, kind people in my world. Firstly, just my husband, and we're doing this together, including I Can Dance. We're doing life together. And he walks me through I Can Dance as well. And my family have been in support of me, even though theyre far and I have some very special women friends who have their own stories, that are there when I know I need them. And then there are some who have similar stories to mine. And some of the stories are very different. But I have consciously - I consciously seek community.

Rina Teslica 31:29

See, this is what we need to learn, personally as well. I think a lot of us, certainly myself didn't want that community because you feel like it's only happening to you, and you're the only one who's going through or dealing with it. So for a long time, I didn't want the community I didn't want to help. I didn't want to reach out to anybody, because I didn't feel that I would be seen. However, when I was seen then it was the big wake up call of why have I waited so long? Why didnt I find my Lauren? And my F**king Normal community? So it's such a long time ago.

Lauren Fenton 32:09

It's hard. And I think I'm sure there'll be people listening that maybe fee , you know, it's a lot sometimes to reach out and find people and and especially in in like the disabled parenting community, I think there's, you sometimes don't want to seek people with the same diagnosis picture or story because then the comparison is so in your face. And also, maybe you're just not dealing with it and accepting it yet. Or you know that you're dealing with it in your own way. And you don't want to be compared to anybody else's story. But I think also then you can also feel that the comparison and your scenario is in some sort of hierarchy and that somebody who is in a different scenario wouldn't get it because yeah, I'll be blunt. They feel like well, their child's less disabled than my child or that they don't have this to consider my sense is with I Can Dance it's it's just everybody together. It's not it doesn't you know, everybody's stories are different. And it's about supporting and building community based on the fact that difference isn't a bad thing. We're all here. We're all human. And love is the most important thing, I think. Yeah, I think it's it's hard. But people need to feel that actually its worth being a bit brave and stepping outside and trying to find that community because...

Rina Teslica 33:33

...it's worth it.

Lauren Fenton 33:36

Find your Rina. God, find your Juliet and you're sorted. And I guess it'd be really nice to hear how you think so clearly, you're very passionate about movement psychotherapy, and what it can do for children and adults. Can you tell us a bit of like, you know, give us a flavour or a story of a child that you've helped or a family that you've helped and what it's done for them?

Juliet Diener 34:07

Hmm. One of the core principles is thinking about what's happening internally for a child and not just believing that it's a behaviour. Everything that a child tells us is a communication. And I remember once a child coming in, and it he was in the room, and he kept screaming, and he just kept running around and screaming. And the absolute shame that the parent had, she just had so much shame. And just said "I'll take him. No, don't worry, I'll take him now". And I said to her "just give us time". Just I said firstly, just trust just ust trust that my team they can they can do it. My team can do it. And I said let's just see what's happening for him. And then we just gave him time to sort of process, to arrive, to be in the room. The team worked with him in specific ways. And over time, we realised that the screen wasn't distress, the screen was excitement, the screen was joy. And I think so often we look at something we think it's that we look at the scream, we think it's distress, and we need to remove. And actually, if we stay with we work with, we sort of feel it, work with unconscious and say, well, what actually is happening here, we discover a whole different story.

And that that kind of process plays out all the time. I find it fascinating many parents phone up and ask about I Can Dance. And I always have a personal conversation with every single parent before they arrive. And the first step is because I want them to know that there is someone that is truly interested in who the child is. And I want to understand them, I'm not going to get your full story, but I want you to know there's a voice behind this and that that voice is looking forward to see you. So that's step one, and building this relationship. But how often a parent will try to explain, when I ask them about their child, they'll start explaining and then start sort of thing, which is okay, you'll see a little bit fine,

Lauren Fenton 36:21

Oh, my gosh,

Juliet Diener 36:22

All the time. And, and, and I'll say, It's okay, this is what we do. And this isn't about your child coming and being a dancer, that's not what I Can Dance is about. This about about coming and being part of the community and us us finding ways to support your child and using the way they explore the world through their body, in finding their space in our community. And I'm always struck at how shocked they are, that no matter the level of need of the child, that that's okay. We will work with it, we're not going to reject.

Lauren Fenton 36:22

I think as a parent, you get so used to, you know, you paint these pictures differently depending on who you're talking to. So, you know, everyone knows, well not everyone, but most people know, now, if you're writing an EHCP, or looking for support within the school, or education system, think of your child on their worst day, you know, that horrible, which is just oh, so difficult to write and think about. Conversely, when you were trying to get, you know, support, I don't know, like child care; "This is totally manageable, they have no behavioural issues". You know, just kind of trying to diminish or to minimise, you know, their issues . Yeah. And I think is when you get used to putting it down on paper, what the diagnoses are, and they can look really scary on paper. And it's not about the child and knowing that child and what the child is capable of, you know, it's just about a set of labels that, you know, the systems that we rely on in health and education have put on our top children.

Juliet Diener 38:08

I think that's why for me naming it as an affirmation of I Can Dance was so important. And it's become even more so as the organisation has grown. Because most families, when they start at the beginning of being diagnosed, it's it's all about what won't happen, you know, everything that's not going to happen, every milestone they're not going to reach and all those things they're not going to do. And you're overwhelmed with their sense of the "nots". Yeah. And I just wanted to focus on everyone can dance, I can dance, And that is what we're going to do. And we will find a way. And so the approach is about and the way I feel that we should be approaching anything, not just working with disabled people. So this is what I would like. This is my challenge. So what;s that bit in between, it's going to make it possible. Yeah. And who do I need on my team to help them do that? But in between, because we shouldn't be doing it alone. It's not possible alone.

Lauren Fenton 39:03

No. That's amazing. Hence the community. And have you made any mistakes? Sorry, to like, go from that amazing positivity to like, tell us where you got wrong. What mistakes have you made along the way?

Juliet Diener 39:22

I think when you're dealing with families, that you always need to know that there's more to the story. Never feel as if all my experiences never feel like oh, we've got this. Oh, yeah, no, we understand this child. And then all of a sudden, they have a bad day. And they're gone. They're running. You're like, Okay, we didn't see that pattern. And that's one of the things I've really learned is always be open to being surprised. Do not think that this is the child I think so often disabled young people are seen as one dimensional or this is them. Yeah, we got then. And I'm like, Absolutely not. They are just as 3d if not more of like we are everyone their emotional growth and well-being is not determined by where they might be, cognitively, their experience of the world is just as what we're experiencing. So I think I learned very quickly do not think, Oh, I got it. We understand we got there we've got this, this this strategy sorted. But no, it's just always open to change, and always open to thinking differently, because that's what we need.

Lauren Fenton 40:33

What have you learned from the children that you deal with ? If you could give us an example of something that you've learnt from a particular child or experience at I Can Dance?

Juliet Diener 40:45

Well, I feel that every single one of them has helped shape what I Can Dance is, and I think that's what's made it what it is, an act that belongs to the community, is that my story has intertwined with their story. And together, we've shaped this. I speak a lot about that with Emily, who's a young woman who has been at I Can Dance since she was really little. And is now 20 years old, studying law at university. And she does a lot of young Ambassador work for I Can Dance. And her and I often talk about how our stories shaped each other, how she spoke to me about what she needed, what it felt like, what she wanted, and I responded to that in the movement, and in the shaping of organisation growing. And that story can be told numerous times where every one of the children that have stepped in, and in many ways I feel like I Can Dance is a bit of an elastic band is that it has a clear shape, there is a clear shape of who we are, what we do and how we do it. But that we can stretch according to who steps into the community. And that is true community is you shape around each other, it's not this static, rigid thing. That's the problem is that the important insistence that our static and our rigid, and until these fluidity, we will constantly knock against the science.

Lauren Fenton 42:20

That's so true. And I think that it's not even that their static in terms of like being there here and now I feel like thyere always behind the here and now the systems that we interact with, it's like things takes such a long time for, for things to evolve to suit the needs of those who who need them.

Rina Teslica 42:22

And even then it feels like they're boxed in so you're placed into a box and moving away or out of that box or to a different box is just impossible. I love this concept of the elastic band, it really does make sense. Where do you see I Can Dance going? What is your dream scenario - what is the future of I Can Dance?

Juliet Diener 43:07

My dream scenario is that we have a home. And then home is a space, which is a creative community that is interspersed between people with disabilities, people without disabilities, people coming and exploring and being creative and engaging with each other, and shaping each other in ways of what it is to be in community. And, and that there's this just a constant growth of, of sharing, and that we're learning from each other, that the young people are leading us, the young people are telling us what I Can Dance needs, and putting their ideas forward. And we are then supporting them to make that happen. Their families are involved, thier families are building and creating. It's a place where you arrive and you know that I immediately no matter the differences that I bring along with you. And that can look like so many different offers. But it's about a place I dream of a place.

Lauren Fenton 44:12

Sounds like utopia. Amazing? Can we come? I mean , so I Can Dance is in London and you know we'll have people listening who are not in London, we might have people listening who are also looking to like drive community, what would be your advice to other people who maybe want to create their version of what you've created? Organisations trying to build more community around disabled children and their families.

Juliet Diener 44:41

Just firstly, just don't give up. It's really hard work building and creating, especially at these times that we're in now around cuts and funding; cost of living crisis. And I think for me, it's about listening to who your community are. Let it be shaped by them. Let them be part of it. I think it's really important.I don't want to ever franchise I Can Dance. I remember when we spoke about growth, there was a discussion like, Oh, do you want to create an I Can Dance South London? Do you want to go create it in other parts of the country? And actually, I don't want to do that I Can Dance for me is about the people in which I've created it with and who are around me in the community that it is now it's very specific to where it is. The concepts, the principles, the values that can be shared. And that's my goal is that, and that's what my research is about, is that these ideals, and the learnings and the framework that are, hopefully one day be able to publish and share that can go anywhere and can transcend any culture, all spaces and foreign language. But that actually, you then apply that where you are. I don't want to hold on it on to anything that so tightly that it's like, oh, it belongs to me. The whole point of me creating this is so that it belongs to everyone, and that I can share it. And it's hard work. Its had work being a working mum, it's hard work having a belief and fighting for it. It's tiring. I encourage you ever. Anyone who is building has a vision to make sure you've got people around you that can help you do it. And that will encourage you believe in you.

Lauren Fenton 46:35

Yeah. What do you do to kind of switch off from everything Juliet? Who is Juliet when she's not mum, Academic, I Can Dance founder and CEO? Who are you outside of all of these things?

Juliet Diener 46:51

I’m a dancer.

Lauren Fenton 46:52

Ah, you dance! Good answer. I set you up for that one. Course you do.

Juliet Diener 46:58

And its the truth.

Lauren Fenton 47:00

I'm sure I'm sure.

Juliet Diener 47:02

At the end of the day, I'm just a dancer, a dancer with the dream.

Lauren Fenton 47:06

Oh,beautiful. What would you say to like parents who are like, dance like, you know, movement psychotherapy? What? Is there any advice, you know, to parents or families out there to how to kind of think about movement and dance with their children, you know, just on a very micro level

Rina Teslica 47:26

And how to incorporate it into the daily?

Lauren Fenton 47:29

Yeah

Juliet Diener 47:30

Absolutely. I think that's one of the reasons I created the I Can Dance approach was to be able, because dance movement psychotherapy in itself can look can look quite clinical, if it's done in its purest form. And I suppose my application of it in I Can Dance is bringing it into the community. And, and using it with the combination of the other strategies and tools. And I think it's really important that we remember that our bodies are tools, and that they are created and that our children are like tape recorders. They just they're recording everything. As they're going through the world. They're feeling it they moving it. And so are we and so how can we respond to it? So what are we holding in our bodies? And how does that impact on our relationship with that child? And then also what are our children holding in their bodies? And what are thier bodies is telling us? I think so often we can be so informed by what needs to be done. We need to go brush teeth, we need to wash face, we need to get jobs, I need to move, you're going to shift for you I need to but actually, what what do our bodies say? And what does it feel like if we stopped and listened. And if we felt because we feel everything first, then we put and then we sort of put it into the cognitive sense. And we assess things from a nonverbal way all the time. We just don't realise it at all when we're using. And so yes, and also just the creativity art, I love the fact that we can just be and I see that even with my children, I'm very playful with my children through creative ways. And, and that becomes our little story. And I think sometimes parents forget that we need to do so what does it feel like just to be?

Rina Teslica 49:16

Oh, that's gorgeous. I did try this with Lua because she can be she can become quite overwhelmed with things and because she's nonverbal, then it turns into like a screaming match or she gets very upset and there was a point where she was like pulling her hair out. But I started to just sit so if I if she was getting upset, and her favourite thing is to sit on my lap, so sitting on the floor on my lap, and just like stopping and that immediate change in her behaviour. It was like, Oh, I do have the space to stop and really think about what it is that's happening in my emotions and what is it that I really want where previously you're always thinking of like, she's upset because x, I need to do X because she's y. But just that, like three minutes of just sitting like even last night, and she was just like, I wanted to turn off the TV because it was like bathtime and she like had a meltdown. Because she didn't understand what, what was going on. But just to sit on my lap for a minute and just being quiet and just. And then she understood, okay, fine. Yes, I am tired, which is why I'm upset. And so she started to sign for tired and she started to sign for bath time. Yeah, it was so fascinating.

Lauren Fenton 50:37

Beautiful. Like, take a breath. Yeah. And a moment. Just be and yeah, like calming?

Juliet Diener 50:45

Yeah, you created that space. I think even as women, we don't always do that with each other. You know, it's always so filled with words and busyness of telling something. What does it feel like just to be? And then sense, get a sense of where eatch others at and actually sometimes you'll discover something you didn't actually see that you feel.

Lauren Fenton 51:07

Yeah. Oh, my God. Yes. Happy International Women's Day. We're recording this on International Women's Day. So let's just take a moment with each other to sense where we're at. And be. Yeah, well be and then sense where we're at. I like that.

Rina Teslica 51:26

Brilliant. Are there things that you've learned from working with parents and your own research that you'd like to share?

Juliet Diener 51:34

I am fascinated by this area that I think is actually really under researched. I think one of the biggest things for me, is how important the parents voice is, and how often parents don't feel that their voice is heard. And through that research, just by offering them opportunities to be heard, that in itself is just like a thank you. Thank you for listening. And all those parents are going okay, so where will this go? Will this make that difference? And at I Can dance we've done various bits of research some on the parent therapy groups that we run, and we've got a paper that is sort of in the process of being repeated. And at the moment, we have another bit of research that we're doing in partnership with Goldsmiths University, where we're analysing over 20 interviews with parents just talking about how they manage the last few years - cost of living, Pandemic. And what did that look like and how they looked after themselves. And its always shocking, to just discover each of these stories and what they've had to manage, and how important it was for them to be able to be listened to at this point, and an absolute hope that they're adding their voice will make a difference. And we really hope that what we gather will be able to be the beginning of quite a few sort of projects around making sure that their parent voice is heard.

I always find it fascinating that whilst every parent's story is different, how many connective themes they are. And one of those is the fight , constant fight, the constant struggle, and the absolute lack of ability to stop. Because there's just no end to what the child needs. And I think those those ongoing feeds are just the overwhelm and, and the fear of the unknown and what lies ahead, those types of things. And I think the other thing that we found really important in the research we did in the parent therapy groups is the value of each other how so often they would say what it felt like to step into a space, that they just knew there was no judgement, that they could say anything, and that they didn't have to explain it. And they didn't have to feel that they needed to clarify what the child's behaviour was, why they responded. And I think that power of each other, and of hearing each other. And that, for me is truly a gift to be part of.

Lauren Fenton 54:21

I think, well, you know, hopefully we that's what the F**king Normal is about as well. It's, you know,

Rina Teslica 54:27

Offering that space to be yourself as a SEN parent.

Lauren Fenton 54:31

Yeah, with no judgement. Absolutely no judgement. Thank you, Juliet. It's been so lovely talking to you. I feel like I feel so lucky that we have you in our lives that Bea is able to attend, I Can Dance and she gets so much joy out of it. And it's a it's a real place of, of love, which is what you want it to be. So that's that's lovely. And thank you for talking to us today.

Rina Teslica 54:59

Honestly, it's been beautiful. Yeah, you've said some really like profound things. And yeah.

Lauren Fenton 55:08

But to end just to go from there the profound and the beautiful to slightly more blunt and sweary. We always ask our guests what is the fucking normal? So Juliet, what is your fucking normal?

Juliet Diener 55:25

I think my "normal" has become that anywhere can become a space that you can make things happen. And I relate that to the fact that I have turned a Great Ormond Street toilet cubicle into a fantastic meeting room. And that is absolute truth. So anywhere can be a place that you can make things possible.

Lauren Fenton 55:50

Oh I love that. That's perfect !

Thank you so much for listening to the F**king Normal podcast. We love making this podcast.

Rina Teslica 56:05

Yes, we do.

Lauren Fenton 56:05

We are part of a much bigger team, almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences. So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at fhttps://www.fkingnormalpodcast.com/. That's f k i n g normal podcast.com you can join us on Facebook and on Instagram at fkingnormal_podcast. That's f k ing normal underscore podcast. You can get all the links and more information in the show notes below.

So thanks so much for listening all the way to the end. We'll see you next time. Bye!

Music to play out...

Transcribed by https://otter.ai

Episode 18: Working 9 to 5 with leisa millar

~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Lauren Fenton 0:01

Okay Rina, you seem stressed what's going on?

Rina Teslica 0:05

Do you ever feel that parenting disabled child is chaos like absolute paperwork chaos? There's just so much admin. On top of caring for your kids. It's like, oh, my frickin daughter's PA.

Lauren Fenton 0:21

Ah, yes, you should try the new Hibi app, an app, not just any app. It's Disabled Parenting mega pa organisation. So you can schedule appointments, have reminders for your medication, have all of their medical notes and letters and just one place?

Rina Teslica 0:40

Hang on. spell this out to me again.

Lauren Fenton 0:42

Hibi H I B I it's a Disabled Parenting organisation app. I wish I'd had it when he was younger. It gives me a sense of control over well, the uncontrollable

Rina Teslica 0:55

Sounds intriguing who doesn't want to organise disable parenting chaos? One notification at a time?

Lauren Fenton 1:01

Haha. Yes. It's my new sidekick. Side kicking the shit out of Disabled Parenting organisation.

Rina Teslica 1:08

That's the least catchy strapline I've ever heard Lauren.

Lauren Fenton 1:12

Yeah, okay, fair enough. They won't want it. But if you, like Rina and I, want to give it a go, you can download hibi for free on the app store now.

Rina Teslica 1:45

So on today's episode, we're tackling working the nine to five with guest, Leisa Millar, who started the SEN mums career club on this exact topic. I thought it was a really interesting conversation, and especially poignant to me personally, when I went back to work and my whole journey going back into the office. What did you think Lauren?

Lauren Fenton 2:03

Yeah, no, completely. I mean, I think it's, as I've said, on the podcast before, this is an area that I really struggled with, you know, trying to go back into the career that I had prior to being a mother to Bea and not being able to manage that juggle. And I think I think it's really important that we acknowledge that actually, it's just not possible for some people. So although we had this lovely conversation with Leisa, and I know she has with SEN career club podcast. And, you know, there are carers out there. And we know, we know people out there who just can't do this, it's not feasible given the needs of their children and the demands of life, the type of job that they would be looking to do. And, you know, I think we have to acknowledge also single parents, you know, don't have that additional support of somebody alongside them.

Rina Teslica 2:59

Yeah that was exactly my, my journey. As I've said before, like, there was just no feasible way that I could go back into the office when Lua was small, like it was impossible, regardless that, you know, I have a partner and well educated and had all the things but actually, technically, and logistically, it was just impossible to go back into the office. And it took a very long time a to find. And I think also the pandemic helps massively because remote working, there was no other way. You know, so that helped, I think, massively to find a job that was able to be supportive of my situation. But also, I didn't know what the hell I wanted to do with my life. I think having a second kid really starts, you start questioning your working journey and where you want to go with life.

Lauren Fenton 3:46

Well, just who you are, your identity. I mean, like, every fucking day, like, who am I? What am I what am I if I'm not caring and mothering? What Well, who am I now? Yeah, totally. And I think, for me the guilt that comes with that. So we, you know, we talked, I think it looks a little bit about the guilt of going out to work and not not therefore being with your child all the time. But I think there's also a guilt of like, just not being able to make it work and having to rely on others or systems of support, because you're not going out there and able to work and earn the money.

Rina Teslica 4:26

But also, it's a confidence thing as well, because I think for me, personally, because I was out of work for so long. I'm obviously not bringing in the monies and relying on my partner, but you also start, you know, thinking, what am I bringing to the table? Yes, I'm a stay at home mum, and I'm looking after the household, but what else is there for me?

Lauren Fenton 4:45

And it really doesn't have to be what else? I mean, the point is, you're doing something that's of incredibly value and very important, and it's more like Yeah, but I get it. Society doesn't always tell us that and also for yourself for your confidence. for you something else could be very important and could be what you want to do so yeah, I think it's really hard, doesn't it? Do either way a question? Anyway, it's a great chat that we had with Leisa and I think it's the start of perhaps more conversations around this topic maybe I think maybe next time we have to should have a full time carer parent who had no choice but to do that 100% of their time and have that discussion as well.

Rina Teslica 5:31

Agree. Agree.

Lauren Fenton 5:38

Welcome back to another episode of the fucking normal. And today our guest is Leisa Millar. So who is Leisa? Leisa is a journalist who works in audience development. She has three children, Casper, who is one Felicity who's four, and her eldest six year old Beatrix Beatrix has a rare genetic disorder called Kabuki syndrome. The syndrome impacts on Beatrix in a number of ways both physical and cognitively, she has a learning disability, low muscle tone, hypermobility, and minor cardiac issues, amongst other things. Inspired by her own challenges managing the juggle of career and kids, Leisa recently started her own podcast called The SEN Mums career club, a place for women raising children with complex or additional needs to find support and inspiration from fellow mums who are also endlessly juggling all of the extra internal and invisible load, like therapy, hospital appointments, funding all the educational fights alongside climbing the career ladder. So welcome to the podcast. Leisa, absolutely delighted to have a fellow podcaster on. I love what you're doing, and the fact that we kind of have a shared purpose or mission in this space. So welcome,

Rina Teslica 6:58

Welcome. Welcome.

Leisa Millar 6:59

Thank you both. I'm absolutely thrilled to be invited. So thank you.

Lauren Fenton 7:02

I mean, to start with, we obviously know a little bit about you, because we've been listening to your podcast. But if you could tell us what it is that you do for a job and also kind of what your background is, what were who were you before Beatrix came into your life?

Leisa Millar 7:18

That's such a lovely way to put it, isn't it? Who did you used to be?

Lauren Fenton 7:22

Not that you've necessarily completed changed!

Leisa Millar 7:22

It's true, though, isn't it? There is the before kids and after, I think for for all mums. It's just, it's just true. So I am a journalist, I've always worked in digital content. So since 2006 2007, where I got a job working on the website of glossy magazine in London, sort of by accident, when a writing competition got some work experience, or the fashion magazine, which is not anything that I would have ever gone for would have ever thought I could get. And the stars aligned. You know, digital was becoming more of a thing. They did have a website with an editor, but it was growing. So I got my foot in the door. And I was like I'm not taking my foot out of this door. So I managed to hang around there. And I was working on this website attached to a magazine and I did that sort of bounced around titles for probably about 10 years working in the fashion space reporting. So fun running around fashion shows, that kind of thing.

And so from there, I moved over to tech and worked for a big tech company that had a news arm. So I was working in a newsroom that was working with all syndicated content on a really global scale. So that was really exciting, really fast paced. And I was in that job when I had Beatrix, living in London doing a big commute, big job. And my life now looks really quite different. Six years on, but I am still a journalist, I still work in what the discipline is now known audience development. So essentially, I find and grow digital audiences for brands. So that's through things like social media, through search through newsletters, you know, using data and insight and working with editorial teams to really understand who their audience is, what they want and where we can find them.

Lauren Fenton 9:20

That's amazing. And then Beatrix came along. So tell us a bit about tell us a bit about Beatrix.

Leisa Millar 9:27

So Beatrix is my eldest. She was very much planned. Very wanted. I had my husband Jamie and I got married started trying for a baby quite quickly. I had two early miscarriages before I had Beatrix. So when I fell pregnant with Bea it was quite an anxious time as anyone who's been through that will know or even if you haven't been through that, so the pregnancy in retrospect, there were a few red flags that we now look at and go that was a bit of a red flag. I had some growth scans because she was measuring a bit small, but everybody says, that happens, you know, it's fine. We had a little bit of extra monitoring because one of her kidneys looked slightly borderline enlarged on one of the scans. So we had a few extra scans, everyone said, It's fine. It's really borderline, she probably just needed a wee at the time of the scan. It's nothing. And I really clearly remember one of the scans where the sonographer said to us, did you get your Down Syndrome screening back? And I said, Yes, Yes, everything's fine. And again, in retrospect, that stuck in my mind, and I'm like, why did she say that? You know, I've had since I had two other pregnancies, and that's never been asked before. But at the time, we're first time parents were like, Oh, yes, we've had that. It's fine, you know, but now I'm like, why did she What did she see?

To us, everything was fine. I was healthy. I was you know, trying to be so I was doing being good. Everything to the letter, I was doing the best pregnancy, you know, ambitious, I was going to do the best pregnancy, the best baby, you know, all of this stuff. And, and then Bea arrived, and nothing was as we expected it to be straight away. There were some signs that not all was well. So she was small, not not dangerously small. She was six pounds nine, but she was 10 days over. So she was quite small. The first physical thing was her ears. So her ears are slightly misshapen, they're low sighted, and slightly misshapen. And this is a feature of Kabuki syndrome that we that we know now we didn't then there were a few other other things as well, that were just a little cause for concern. But she was born at night. And we were taken away. And it was on day one, really when the doctor did the checks and then her hip funked. And they were like, well, that's not really supposed to happen. And then they scanned her heart and found a little heart murmur. So we quickly went into the school with her. But she seemed fine. She was she wouldn't breastfeed, but everybody reassured me, you know, keep trying, they put her on formula, keep trying, I was really determined to do it, she would not have any of it. But she was you know, she was feeding, she's doing all this stuff that they look at for you know her to be okay, in terms of discharging her. So after five days, we were sent off with referrals for her heart for her hip for her, you know, for her little dysmorphic features. And that was that. As far as we were aware, we'd had a baby, we'd come home few little snagging issues as we thought of them at the time. And that was that.

And it was two years, it was the month before her second birthday, that we actually got the diagnosis for the Kabuki. So along that road from her being born, to getting the diagnosis, obviously, there were more red flags, she missed milestones, etc. And it was very difficult actually 18 months, probably, period when we got the genetic diagnosis for her I was already five months pregnant with my second baby Felicity. And just so optimistic, really, we were really reassured that you know, this was very rare, it was unlikely to be inherited. And for some reason, I just had no concerns whatsoever about Felicity, and she. And I was right, she came out she's had absolutely no issue at all.

Lauren Fenton 13:06

Sorry to interject, but do you think you just felt completely different? Like, why did you? I'm kind of curious, why did you have no concerns? Like why was your instinct? So clear?

Leisa Millar 13:19

It's such a good question. I don't know. I don't know whether it was because. And actually, this is a story of poor Felicity's life, because I was so concerned with be like, kind of like, couldn't even begin to imagine that it might happen, you know, for her. And this really is I mean, poor Felicity, she's Miss independence. And I look at her and I'm like, is that because that's who you are? Or because that's who you have to be? You know, and I think that genuinely sort of started in in the womb. But I mean, I'm sure I must have done everything looks a bit different. In retrospect, I'm sure but I certainly or maybe it's because I had all those anxieties of a bee in pregnancy because I was worried I wasn't going to carry her to term or there was going to be a problem. And because I just felt like I had done that I had delivered a healthy, healthy, baby. I didn't have as much concern about Felicity. I don't know, it's a good question. I don't know why it is. Or maybe I just knew on some level, I don't know.

Rina Teslica 14:16

How did you feel when you got the diagnosis? Because for 18 months, you were kind of dealing with a child who was showing signs that there was something amiss, but you didn't quite know exactly what it was. When you did get the diagnosis? Did you feel kind of like, yes, it's an answer, kind of Hallelujah, or were you like, oh, shit, this is kind of now in writing. what way did you swing?

Leisa Millar 14:40

Ah both actually, depending, depending on the day and the mood, you know, obviously, that I think as a first time parent to say your child has a rare genetic condition that is going to mean you know, multiple impacts on their life, what you imagine their life and your life as their mother as a family is going to be. It's incomprehensible, absolutely incomprehensible. So I think to be told to have that confirmed, that is so difficult, but equally, it doesn't change who she is and what she can do and what she has been able to do. So, in that respect, it's nice to have an answer. We know where we stand, we know what we're dealing with. That's helpful. But yeah, to just come to terms with the fact that she's not just going to catch up and all of those lovely, well wishing, you know, well intentioned people who do say, please, you know, don't worry, oh, that happened to us. It was fine. Or I know someone, you know. And I know some people get a bit upset that that people do approach it in that way, but I never have I always, you know, I feel like people, people don't know how to talk about this. They don't know how to deal with this. And that's the way to do it, isn't it you reassure someone you try and be kind?

Rina Teslica 15:52

Try and minimise the issue.

Leisa Millar 15:54

Yeah, exactly. Exactly. And it's not necessarily the most helpful thing, but it's certainly a well intentioned thing. I think. So I don't mind that so much. And I certainly don't feel like I was blindsided by the diagnosis, because I had been so reassured up until that point wrongly. It it was it was, quote, unquote, good to get the diagnosis, ultimately,

Lauren Fenton 16:17

what was the impact? You know, coming back to kind of nine to five and the SEN mum's career club and the subject of this episode? What was the impact on your working life and your career? What's it been? I mean, I guess you would have gone in and had the conversation of okay, there's, there's a lot something going on with, with my child, and I'm going to need to go to these appointments, probably at the same time, as you were telling them that you were gonna go off on maternity leave again like, Oh, how did that? How did that? I guess, it's a two-form question, How did how were work? And what was the impact for you, personally, in terms of your career and your job going forward?

Leisa Millar 17:00

So work with great work or very understanding, you know, even before the diagnosis, I think this is the thing that people don't necessarily, you know, unless you're you inhabit this world, certainly, before I came into this world, I would have thought that pre diagnosis, everything just sort of was normal, and post diagnosis, everything was not normal. I'm doing quote, air quotes here, for anybody who's watching this video. But I think nothing really materially changed. In terms of our day to day after her diagnosis, she, she already had all of the referrals, you know, she already had all of the therapies booked in, I look back at her when she was a little baby. And I was on maternity leave. And this was sort of hanging over us. And I remember I used to sort of snuggle her and say, there's nothing wrong with my baby, there's nothing wrong with my baby. And in those days, that was because I was thinking, God, please don't let there be anything wrong with my baby. Because I don't know how I'll cope with that. And I still do that to her today. I snuggle with her. And I say to her, there's nothing wrong with my baby, because there is nothing wrong with her. Everything is right about her, you know, she is who she is, and who she's meant to be. It's been such a journey.

But I think, you know, in those early days of work, to me, that was just parenting, she was our first child. So she had some appointments, and I, you know, read all this stuff about how difficult it was to juggle work and parenting, and you know, you'd have to leave on time. And you'd have to go and do this, and you'd be pulled in all directions and get the guilt. And that's what I you know, that's what I was doing. I was dashing out in the middle of the day, I was working from home, so I could go and take her to a hospital appointment. To me, that's what parenting looked like. And it's only since I've, you know, had my other children who don't get half as much of my time and certainly don't need to do any of that stuff, that I realised that that wasn't what people talk about when you talk about juggling, work and parenthood. But to me that that's what that was. And in terms of my work, also my husband Jamie, he's a freelancer. He's also a journalist, but he's freelance. So the way that we've always been set up before we have be is that he works on his own time he works commission to commission so he manages his own time. And I've always had, I've always enjoyed being, you know, in the more corporate world, having the nine to five and the colleagues and you know, being in the office, I mean, I work remotely now, but I'm essentially in an office, I'm on teams all day. You know, that's just the way our roles and our work is split. So he takes on a lot and always has done in terms of those appointments and things as well. So between us back in those early days, we managed and it didn't it didn't feel too bad.

I think on a kind of macro scale for my career. The big impact is that we've moved out of London, and that was a lot to do with Beatrix, but also a lot to do with just having loads of other children and needing a bit more space and needing to be closer to my family. But that that you know, I think So I think there's the day to day impact. But also there's that that enormous. My industry is in London, you know, the magazine industry, the newspaper industry, they are based in London. And if I take myself away from that, you know, I can't just go to a PR event, I can't just pop out for a drink. I mean, that changes when you have kids anyway, but you know, you make it work, you're there. And I moved out of London, and I really thought at that point, is that it? You know, am I going to have to do something else? What are my transferable skills, you know, you really start looking at that stuff. But, I mean, I was gonna say, fortunately, of course, it wasn't fortunate. But our move coincided with COVID. And suddenly, everybody was working remotely anyway, and I found a new job, that was a remote job. And the stars just kind of aligned for us in that respect. So I feel so fortunate, you know, obviously, this all impacts on my work, and how much time I have in the day to work. And the sort of stresses that hang over me, while I'm trying to concentrate on work. But in terms of my actual setup, you know, got Jamie now got my mum around the corner, I work remotely, I've got a very understanding boss. And I think all of these things, put me in a really fortunate position, which is why I sort of felt that I should use that, to try and help use that position of privilege where I can talk about this openly, to try and create that community of other women that I know are out there, but don't have some of those protections or privileges or support networks, to try and shine a light on women working in in our specific kinds of conditions, I guess.

Rina Teslica 21:41

So what was it that prompted you to kind of make or create the sand mom's career club? Was it? Was it something that kind of happened that you were like, Oh, my God, I'd need to do this? Or was it a slow buildup of Wow, there needs to be more available to women who are going through something like I am?

Leisa Millar 22:00

I think like all best ideas, I don't quite remember where it started, you know, it's just sort of always been there like they need this needs to happen. One of the big moments in that was I read Joeli Brearley's book "Pregnant, then screwed". And I remember reading the stat. And I remember being absolutely delighted that she even covered the topic of women with children with disabilities, because genuinely in any of the other content I had consumed, whether it was a podcast, or whether it was a book, it was not mentioned at all.

I remember trying to potty train be. And the book I read was, it just had such a flippant throwaway line about like, if your child is three, like you're doing it wrong, or something. And you know, and I just this was the book that everybody recommends, and it's like, someone stabbed you, isn't it because it's that constant, I am not doing this right. I, I, you know, she is not thriving because of something that I have done wrong. And it's just, it was just so flippant, just a tiny example of, I guess, I guess what I feel is a microaggression towards, you know, parents, who are trying to raise children different, who have different abilities and needs. And so I was delighted to read that book, and just just see that parents with disabilities were acknowledged as a group, it's the first time that really I had seen it. So thank you, Joeli, if you listen to this, it was amazing. And the stat was that 3% of women with disabled child are in full time work. And the definition of that was what we understand traditional full time, you know, permanent roles. So I just had that playing on my mind a lot, because on the one hand, I'm like, well, that's a very, very tiny amount of a lot of women who were probably in full time work before they had their child. But equally, you know, if you look at the stats on women who did have a disabled child, there are a lot of them. And that 3% constitutes a lot of women. And actually, then if you bring in women who are working, but aren't in that specific, you know, niche bracket in terms of that data, if you look at women who are working part time, who are working, you know, on a freelance basis, and all the other ways that we know, women are keeping themselves sane, earning money for their families, you know, working on themselves away from being a parent. That's a huge, huge number of women. And I couldn't I didn't know where they were, I couldn't find them. Like I say this book was the first time I'd even seen them acknowledged as a group.

And I have come to think of it as kind of a Venn diagram. So I'm in the centre, and I have sort of three big responsibilities or components to my life. So there's, there's work, there's parenting, and there's the care that comes you know, with these needs, the three big things and the content that I could find always only dealt with two. So it's it's the same. It's it's the care and the parenting how to parent a child with additional needs? Or it's the work and the parenting. How do you do that juggle that the parenting with work. And I didn't, I couldn't see one that acknowledged the whole picture for me, which was the care, the work and parenting, and particularly not through that lens of the work, you know, it's always the child comes first. And we all know that they do. But that doesn't mean that we shouldn't have a forum to talk as women about work about our ambitions about our achievements, and our careers and our dreams, and our abilities. Just because we have a child with a disability. So that's what I, that's what I couldn't find, and I felt really passionate about making.

Lauren Fenton 25:53

I think that having listened to your podcast, and what you've just said, is fascinating that I can really picture that Venn diagram for myself as well. I definitely I kind of came to that challenge of managing work and parenting and caring from a slightly different angle than you because I had my first child was neurotypical. So I had done the whole go off on maternity leave to have a baby. And then the poor thing she was put into nursery from like, 7.30 in the morning till six at night, so that I could go back to work and just carry on doing what I had always done. And my experience, I guess, you described, you know, your thinking, feeling that the juggle that everyone referred to was the Juggle you were experiencing with the extra hospital appointments and etc. When my Bea came along, I very quickly kind of had this comparison to my previous child who had been relatively straightforward. And it was very different. And very, I think we call it in our previous podcast episode extreme juggling the, the all, the the additional load was just kind of magnified times by 10. From from from that kind of normal parenting load. And it's it's really interesting. I feel like my, you know, going back to your Venn diagram thing, I felt like I had a lot of conversations at work where people would just say, Ah, yeah, going from one child to two children. Yeah, you're not you're, you know, you've got a bigger family now. Oh, yeah, that mum responsibilities, there was a lot of assumptions. And I guess it's what you were saying earlier as well about people trying to be helpful in minimising or reassuring. And I felt like when I went back to work kind of post Bea, or even when I had conversations about going back to work post Bea because I took quite an extended period of maternity, I took kind of almost an extra year of maternity and called it a career break. There, there was a lot of viewing it my situation as a parenting challenge, without acknowledgement of the additional load that comes with having a child with additional needs. You know? Yes, there's the hospital appointments. But there's the emotional like side of it as well, which we've all experienced. And yeah, I think I think there isn't enough conversations in the workplace or places for people to really get that unless you've been in it. So yeah, I find anyway, long winded. But I found it really interesting listening to your guests, describing their different experiences and how they've made it work, how they've got that Venn diagram actually sort of working for them, because I don't think anyone strikes that perfect, like, you know, balance, work life balance. Everyone hates that term.

But the different pivots, the different approaches that people have taken, and I'm interested to know has did your outlook or your way of you mentioned COVID, and more children and needing and Bea's needs and being closer to your family and doing that big move. But was there anything that changed significantly in your kind of your outlook on your career and your your work? Because there is that big perspective that you get with having additional needs?

Leisa Millar 29:23

Yes. It's interesting, because I think work simultaneously became more important to me and also less important to me. So just, I guess, a healthy readdressing of the balance. So work was important to me before be because it was who I am, you know, who I believed myself to be a striver a hard worker, you know, someone who puts in the effort and gets out the reward. And it was so tied up with my identity, you know, particularly when you're in a kind of like an industry that I was in where it's all all about your profile. You know who You are who you know where you're seeing all of that kind of very superficial stuff. That's very stressful when you're in it. And I didn't find it at all glamorous, just mainly stressful, but I enjoyed the work. And it was very important to me then and because I felt like if I don't have that, who am I.

It's not important to me for that reason. now. Work is less important to me, because the most important thing is the, and I know that in a heartbeat, if I needed to drop everything today and just do what Bea needed, I would do it. And it wouldn't, I say, it wouldn't matter to me, of course, it would matter to me work is very important to me. But fundamentally, it wouldn't shake my understanding of who I am, as a person, you know, would not affect my identity. And I say that as someone with a huge amount of privilege, because I am working. And I think if I did have to drop work and and do that for Bea, I think I would struggle with that. But it's just that sense that work is readjusted in the pecking order of things that are important to you. So it's not life or death.

Rina Teslica 31:03

Funny because listening to you, it's such like a mirror towards my life, because I had the opposite. Once Lua was born, I took six years out of not working. And it was because I needed to be there because she was incredibly ill, it took a good couple of years to get her to like a stable space. But also, having been out of the workplace for so long, your confidence is knocked. And then you start thinking, who will employ me who's going to take on a mother to a child with special needs, and who's going to be willing to be understanding, because ultimately, especially in the corporate world, I do something incredibly similar to you, I work in writing within the beauty industry. So it's very similar. And ultimately, it's corporate. So making money is the biggest thing for these businesses. So how will they be understanding and accepting of me having to like go off and take loads of therapy or take her to, you know, appointments or hospitals or whatever, whatever. So I think that held me back for a very long time until I was confident enough to say, actually I'm great. I can do it, and I will put myself forward. And thankfully, I found a job that is incredibly understanding who let me do whatever the hell I want, of course, up to a point. So it's, it's interesting, because for me work was a way to find who I am away from being just a mother and a carer. Because I'd felt like that for such a long time. And I it shifted kind of how I saw myself and how I saw life once I got a job because it was like, Oh, this is now who I am. This is who I've always been. I wasn't just a mum and a carer that I had identified myself as that for such a long time. So yes, very interesting.

Leisa Millar 32:52

Yes. So I think I think that is the way in which work is more important to me now that I, I guess I just have that perspective of you know that the P word. And we I have that perspective. But it's, I feel very grateful to be in work. And I didn't feel that before. That's why That's how it's more important to me. I feel not like I'm here because because I'm the best at it. You know, I'm here because I've worked hard, and this is what I deserve. I'm like I'm here because I'm really bloody lucky to have a village around me to help support Bea, you know that her dad does take her to all those appointments.

You know, we transferred up here during COVID. And I couldn't drive. This is a huge thing. I've never opened up been able to drive. I've never needed to drive. I lived in London and we couldn't have a car anyway, even if I wanted to drive so but then suddenly we're up here in suburbia, and I can't there isn't a bus outside my front door that will take us to open street or then you know the nearest equivalent Children's Hospital. And it's COVID times so only one parent can go with B so her dad ended up taking her to everything. And I was honestly you know that get that mom guilt, like a paediatrician is gonna be like, Why doesn't her mom care? Like she she's never here. She can't she doesn't come? And it was always like, well, I can't because he had to drive he had to take her. So it's just like that, that sort of understanding that I am one of two parents who have an equal investment in making sure Bea is okay, you know, that is a shared load. In all honesty, it's probably 60 70% Jamie and 40 30% me because I'm focused on work. And that's the way in which work is more important to me. I had a guest on my podcast, Lizzie Parsons, who is an online business manager and she said something that will always stick with me and I think about a lot and really helps me and she said work is my opportunity to flex being myself. And it is that is what work is to me now. It used to be work was myself. You know working He is who I am. It's not who I am now, but it is my opportunity to be who I am. And I think that is what that is the difference for me.

Rina Teslica 35:11

I love that quote. I love that.

Lauren Fenton 35:14

That's really interesting. So I guess, as well as what you just described in terms of, you know, the, your husband or partner doing more of the lion's share, I think, I think it's really important that we kind of acknowledge, you know, there's that awful thing of like, women, in particular, having it all, and doing it all. And it's actually about a combination of luck, like you said, in terms of what support you have around you, but also about kind of what you want out of life. And I think it's, you know, I asked about your perspective changing. And you've, you've said, you now it's your opportunity to flex, being yourself in the work environment.

I feel like I had a complete shift, which was yes, work was completely about me, and that was my identity. But I feel like my identity is no longer tied to that work. I've had a sort of revelation that I don't want to be in that space anymore. And so I think it's not just luck, it's also about what do you want to be your time away from being that carer role? And what's important to you for yourself for for your future, obviously, in the context of we all need to make a living or have some sort of income or something to support our families? But um, yeah, it's, it's there are many different ways of doing that. So I'm also curious to understand from your podcast, guests and your experience interviewing other people, what's kind of, they'll be any really surprising, either pivots or ways that people have changed their working circumstances to make it work. What's the most surprising thing that you've learned?

Leisa Millar 36:59

It's a great question, and I do you know, what I think, going into the process, I think I was maybe hoping to, to find the answer. I was hoping that I would speak to these women, and I never thought of doing that. That's genius, like I will, that's what I'll do that will sort of solve this, this problem for me. And unfortunately, I didn't, you know, find find the magic bullet. But I think it's just been fascinating because all the women I've spoken to some of them have sort of gone back into their, into their roles. So for example, Kate Blackmore, she's a surgeon, and she continues, you know, to to be a paediatric surgeon in the field, you know, in a field that affects her, her daughter, you know, absolutely astounding. And she makes that work. There are other women I spoke to who have gone freelance, you know, in the same industry, or made a slight pivot, so it was possible for them to go freelance in the same industry. I think, really, I am most, not most in awe, that's not fair. All of these women were incredible. But I think the thing that I find personally just so impressive is there I interviewed a woman called Deb's Aspland

Lauren Fenton 37.28

Loved Deb's episode, by the way. Big shout out to Debs

Leisa Millar 38.16

She her situation, you know, she had three children very close together, and all with quite significant additional needs, and disabilities, between them, including including a set of twins. So you know, wow. And she couldn't get into traditional work. So she needed to find something to do for herself. And she could have she worked in the travel industry previously, you know, she could have done something in that space. But what she decided to do was create resources and courses and support networks. And, you know, helping other people in her situation, advocate for themselves. And I think that is what I find most impressive, because to me, work is an escape from that, Work, I need as a separation for that I need to do something completely different, and feel again, quote unquote, normal. In my life. There's something this is the normal world, this is the safe world that I know and understand. And I don't want to think about disability or appointments or DLA forms, or funding or law, or whatever it might be. I don't want to think about that. I want to think about delivering this thing.

Lizzie again, in my mind, I've delivered a thing today I have delivered a thing and that makes me feel better. You know, that's what she said. And that's how I feel about work. But for Deb's and also Charlie, Charlie Bestwick, who I interviewed in the in the season finale. She's a teacher, but she has gone on to you know, set up charities and big support networks and she's a speaker and an author and an advocator in the disability space and for me, taking on that stuff professionally. I'm absolutely in awe of that because I needed to do something different, and these women used what they knew, and they created that kind of good. I think that was really impressive to

Lauren Fenton 40:09

Don't discount the fact that you actually did an element of that too. You started a podcast that was specifically in this space. So I think kudos to you, too. Don't Don't do value that, you know, it might not be your day to day, full time work. And I think I think there seems to be a lot of those pivots that people make, presumably, just because they see so many gaps in the system. And when you see a gap, you you potentially have an idea on how to plug it. I agree, I think God we need people like that, that can go out and, and champion and advocate and support parents and families of kids with disabilities.

Rina Teslica 40:51

As well as having their own. I mean that like it's yeah, it's insane. I'm also like you, Leisa, like, I studied nutrition. And obviously like being in the hospital. You're surrounded by dieticians. And I remember one dietician, when she heard that I was a qualified nutritionist, she was like, Oh, well, I can get you, you know, into a programme here at St. Thomas's. And we can do it and I was like, No, hell no, I don't want anything to do with health. I don't want to work in that space. I've had enough of it. So I took a complete 360 and did something that was about feeling good and looking good and nothing to do with health or disability or so I also have massive kudos to anybody who is working within the industry within the space that also was dealing with it privately at home. I think it's just incredible.

Lauren Fenton 41:40

It's hard to create those boundaries, then I guess it's that's that's the thing. That's the biggest challenge when it's so emotionally close to your heart as well as kind of practically. I'm interested in how so how to how did how did you ask that question? I can't remember for of Deb's, and, Charlie, when and how they create that kind of differentiation between helping the world and helping their own family on the same at the same time? In the same field? And I guess I don't know.

Leisa Millar 42:11

Yeah. Well, Charlie was an interesting interview, because she was she was talking about what her purpose is, you know, her her why. So she wanted to go into teaching because she wanted to make a difference. And, of course, I mean, she, she, she was teaching primary school, she had twins, one of and one of her boys, you know, had had a very, he was very badly affected by a genetic condition and needed an awful lot of extra care. And she continued to be a primary school teacher throughout that. And I think that, and for her, she reached a point where that was unsustainable, and she couldn't keep doing both things. But she said for her, it came down to what are her values? And what could she do that still aligned with her values?

So I think I think it's almost about staying true to yourself. You know, I think if if your values aren't necessarily helping people, I don't want to say my values aren't helping, aren't helping people. Because, you know, I'm not a monster. That's professionally, not one of my, is you know, ultimately, is not one of my, you know, not something that drives me in my career. I'm not I'm not in a helping profession. But I think I think just that alignment with with what you're doing, but you know, I appreciate what you're saying, how do you tow that line? And I'm not sure that they do. I mean, certainly for Deb's, you know, I know, she really felt she feels that unfairness of this, you know, the families that she's helping she feels she feels that really personally and really deeply. And I don't know how, you know, how could you How could you not, because we know that the system is so broken, and we know that it's so difficult, and just again, absolutely hats off to these women who, who are in it, you know, with their families, for other families all the time. It is so difficult. They're amazing.

Rina Teslica 44:08

What else did you I mean, you've interviewed a load of wonderful, amazing women who have gone on to do lots of different things, but what would you what is your advice to other parents who were in this position? And they're looking to maybe get back into the workplace? What are things that you've learned that you wish that you knew at the beginning of your kind of journey, or things that you've figured out from interviewing these incredible women that you would wish to pass on to somebody who just happened to be listening to the episode today?

Leisa Millar 44:39

I think I would say come and find us, you know, come and find us. We are out there. And I think that's one of the things that I really wanted to do with the podcasts. You know, we've got some social media channels that I you know, I neglect horribly because it's sort of part of my day job first sort of not and but with their you know, I do Keep an eye on them. And I think I think just a sense of community is enormous. I wish I had had that. And I think through the interviews, what I realised I didn't know what to expect going into them. And I thought, How am I? How am I going to, for example, with Kate, who's a doctor, you know, how am I going to relate to what she's saying her experience is going to have been so different to mine, or Lizzie, who was, uh, you know, used to be a civil servant, and now is in business, or Helen, who was who's in the legal profession, you know, I was thinking, we're all very different, these are all going to be different experiences. And actually, what came through was just this absolutely universal struggle with the fighting against the system for our children, whilst trying to hold on to our careers and our sanity, regardless of what that career was, you know, it was a sense that I'm not alone.

You know, my experience of filling in the DLA form for the first time, and being rejected. And I felt relieved, because I thought, Oh, these people, you know, they know what they're doing with disability, maybe she's not actually that disabled. This is brilliant news. You know, and then, of course, you come down the line, and you go, nope, they just don't want to give you the money, because it's the government. She deserves it. She is disabled, they don't know her. I know her, you know, we all come through this process. But I talked about that in one of the episodes. It was with Deb's and Deb's went through the same thing, you know, and I just thought, you know, I've always felt a bit stupid about that experience. Because I think in retrospect, I should have known that. But no, you know, it's not, it's not stupid. None of this is stupid. None of us are told, taught how to do this, you know, just like, nobody's taught how to parent, nobody's really taught, you know, you get a diagnosis for your child, or even you don't get a diagnosis for your child, but your child still has a lot of additional needs. And nobody, there isn't a course or, you know, you sort of have to work it out for yourself. And certainly navigating work alongside that, what I have just found the most helpful thing is knowing that other people are doing it too. And it's okay to struggle with it.

One of the most amazing things to come out of the podcast, actually, as well as talking to all of the amazing women I've interviewed is the response I've had from other women out there who are also doing this, you know, so many people contacting me messages on my social media posts, emailing me saying, you know, this is me I, you know, I've never felt seen like this before, because of course, you know, in what forum? Are you going to talk about this, you're not going to talk about it in a professional capacity? Because you don't want, you know, you want to minimise that idea that, yes, you're a parent. But you know, when we're at work, we're supposed to pretend Right? Like, we're not parents, because we don't want it to impact on our, our work. But what if your child needs a what additional care as well? Nobody's gonna talk about that in a professional context. I mean, I'm pretty sure I've made myself unemployable at that point, where I'm like, if if, you know, so be it, because this is so important to me. But it is, it's a concern, right? By talking about this. I'm out there saying, I have a child who takes a lot of extra time. And we know children take up a lot of extra time. And I also have two other children who do have that time as well, including a baby who is pretty full on, particularly at the minute. So it's, you know, nobody really talks about this. But but there are other people going through it. And you know, Lauren, to your point where you said, you know, it sort of gets just swept into that whole: Oh, yeah. It's hard parenting and working, isn't it? Because I think people who are parenting and working, it is so hard, you know, and it's really important. I think, as part of this conversation that we acknowledge just doing those two things is nearly impossible. It's really, really hard. And adding in the care element, makes it even harder. But I think unless you can see that care element. You don't you don't know what it is, you don't know what it means, you know, no idea.

Lauren Fenton 49:14

Yeah, completely. I remember saying to my boss once. I was trying to call some hospitals up to rearrange some appointments. And she said, Oh, gosh, do you have to do this a lot. And at the time, I was like, Yeah, that's probably about, I'd say about an hour and a half to two hours a week of just ringing around appointments. And she was like, Really, and you just like was mind blowing for her that there was this additional load? And I mean, that was just like, that's just one little thing. And that's less emotionally draining than a lot of other things. It's not the appointments themselves. I think it's what you said about not talking about it at work. Made me really angry, not at you, but just at just to clarify? Not at you. But it made me really angry because I think that that, that that minimising of who we are, yes. Okay, you might want boundaries about, you know, what you are in your personal life, who you are in your personal life and who you are at work, but sort of having to pretend or deny that you have all of these additional things that are absolutely fundamental to your life in that Venn diagram, and are going to require you to, at some certain points in the working day or your working life, have to reprioritise and refocus. I think it's just so sad that it isn't easy to have those conversations.

So I went back into the job that I'd done as a management consultant in a big four, big four accountancy firm, and I went back, and it's very much an environment where it's up or out, you know, the expectation is, you will work your ass off and you will get promoted, you will work your ass off so that you can get your bonus. And if you don't want to climb the rung, like what are you doing here, and you'll be kind of managed out or it certainly was like that, back when I worked in that environment. So the idea that you're not hungry for that extra work or that you aren't willing to take on more and or if you're good. And I think this is like as why you're good people give you more work and more responsibility and more roles and more projects. And I was in denial and I was definitely minimising at the time, I wasn't managing my kind of acceptance and digestion of my Bea's condition very well. And I was defaulting to the kind of superhero, fixer, clipboard carrying person that I traditionally, you know, had always been. So I was supporting that kind of minimising hiding, not talking about it, and then kind of was surprised that I wasn't getting some, you know, it was also kind of simultaneously surprised that I wasn't getting support. And, you know, this culminated in me just not being able to do do it. Like it was just too much in terms of the hours that I was working the travel that I was expected to do.

So I think it's really, I guess, it comes back to values and identity that as we've sort of mentioned, but I think it's also important that we, as people in this space we like you've been doing with the podcast, we do try and talk about this and we do try and get it normalise the experience in the work environment as well as in in, you know, our home lives as much as we can. Because it's only by doing that, but like people and start start to have some understanding of what it is that you have to contend with if you're doing that juggle. But I know that's not easy, I guess. I'm interested to hear what your kind of most difficult time has been for you personally Leisa in terms of managing it all. And have you ever come close to the situation I had where I kind of went: No, I've got I've got to handle the resignation and change changed something quite drastically here.

Leisa Millar 53:21

It's a really good question. I think my my toughest period, I'm just coming out of it. In all honesty. We've had a really difficult summer with Bea's health. And I think in all honesty, I've been clinging on to work like I've been clinging onto work with my fingertips, you know, don't know what it would take for me to give up work. It would obviously just be something obviously very serious that be needed me for long term. But I feel like I am clinging on I cling on to work at all costs almost. But in terms of burning out, though, one of Bea's biggest issues has always been her hips. So she has hip dysplasia. And she had all sorts of treatments for it. When she was a baby. There's a pathway for it. So when she was only a few weeks old, they put her in something called a Pavlik harness which correct over 90% of hip dysplasia is in babies, apparently it's quite common. We didn't know it was linked to a genetic condition at the time that makes it slightly harder to cope with. But we were reassured again, you know, this will sort it out. She was about four or five, which tiny baby and had to wear the sort of whole body harness. It's so difficult at the time, it was just the beginning. So when she was nine months, she had a major hip operation and went into what they call a Spica cast, which is like a double legged hard cast basically. So her legs were cast wide open, and it goes up to sort of her waist. Very difficult in a very difficult for all of us. And ever since she came out of that, and it's always been Let's keep an eye on it. Let's keep an eye on it.

And it got to this summer and it's always been it's not quite developing as it should, not quite developing as it should. So she needed another operation. And that was sheduled. She had the operation in in August, it was scheduled for July and cancelled the day before and rearranged. So that was difficult in itself. But the thing that made this the most difficult is that my husband Jamie, snapped his Achilles tendon playing football a few weeks beforehand. So he went into thanks, universe. He went into a moon boot thing and onto crutches could not weight bare, could not lift, carry, do anything, drive. Bearing in mind at this point, I've got a baby who's turning one who's not walking, you know, who needs carrying, and then Bea had her op. And everything was just very difficult.

Fortunately, I had since passed my driving test. So I was able to drive I was thinking, you know, you always think, oh, it could have been worse, I think it would have been even worse if I couldn't drive. But you know what, this is the thing. Every cloud, it made me drive because I passed my driving test a few months ago. But of course, I've set up my whole life so that I don't have to drive. So I never really drove and I was still really nervous about getting in the car. And this forced me to drive. So there's always a silver lining isn't there that's my like, it made me a driver. Because I had to be. There it was really it was, it was so difficult. It was over the summer holidays, Bea had her operation. So they completely had to reconstruct a hip this time. So she went back into a spiker cast because she's bigger, can't really lift her. So we were contending with a wheelchair for the first time. And all the equipment. And of course, just trying to get out of the house. Jamie is on his crutches, I'm pushing be in the wheelchair, I've got the baby in a sling. He's He's a massive one year old. So he's probably too heavy for me to carry, but I had to put him in the sling. And I've got my four year old, poor Flissy, who, as I say just has to basically raise herself because, you know, my two other children have higher needs than she does. So I'm trying to sort of get her to hold on to the wheelchair. And honestly, I think we must have looked like a comedy sketch. But it was very difficult with work because it was the summer holidays. But coming out of that it was very difficult getting Bea back into school. Normally she goes on transport, she goes on a bus, the bus couldn't take her even though it's set up for wheelchairs, because it doesn't have a head restraint on her chair because she doesn't need that. But that means that they can't put her on the lift and take her in the bus because then but then they can't lift her into a seat from the wheelchair.

The logistics, I think is the logistics that nobody can ever get their head round and even for ourselves, you know, you make a plan, and then suddenly, something there's a curveball you could not have foreseen and it throws all the logistics out. And you have to start again, you know, and this was the case over the summer, it was this sort of on repeat, there was something else there was something else and it meant something else. And Jamie just couldn't help like he used to be able to and it was all on me, driving me to school and back. You know, Felicity started school herself at a local school in September. So she needed taking school, the baby needed taking to nursery, and it was all on me. And it was really hard. Thankfully, you know, I took some holiday from work, they were great about letting me be flexible, and you know, go and do some pickups and drop offs. But for me personally, it was just such a lot because I realised how much I rely on Jamie. We are absolutely a team, you know, and it wasn't even just that he couldn't really help it was that he was frustrated that he couldn't help. It's not even just like he suddenly wasn't there. So I had to do it all myself. He was bringing a different element to the scenario to the situation as well. You know, he was really you know, he was struggling because playing football and going to the gym. That's his coping mechanism. And he couldn't do those things, obviously, that as well. Gosh, so it was it was just a really difficult, really difficult period. And I have psoriasis skin condition called psoriasis, which is sort of just scaly patches of skin. And it doesn't normally affect me that badly. I have them on my on my elbows and my knees sort of where you'd normally get dry skin and I am covered. I'm still covered head to toe, it's on my face. It's all over my body in these sort of angry red spots and it's psoriasis and that is stress related and it's so interesting because day to day I don't necessarily feel stressed but my body is showing me and telling me like this is too much thankfully handy

Lauren Fenton 59:43

Kind of handy in a way. Sorry, not to say you want psoriasis.

Leisa Millar 59:49

Yeah, but I mean, but I mean thankfully like I'm sort of I'm too old now to care about. I don't care. I think if I was younger I would read that would really upset me. I don't care about Yeah, I do. kinda thing. Oh, well, there we go, I am very stressed.

Lauren Fenton 1:00:02

Do you get time to do in that Venn diagram to do the self care? Sorry for one of a better term, but the self care meaning just sleep or whatever it is you need to do to rest? Do you get an opportunity to do that? And how do you do that?

Leisa Millar 1:00:18

It's such a good question. It's, it's not very often at the minute. So I would, in an ideal world kind of go for a little run, I'm not much of a runner, but there's just something so compelling about putting on running shoes and running away from it all you know, and putting on your podcast or putting on your music or whatever. So I do try and do that, when I can, I really haven't been able to do much of that. But I guess the sort of smaller way that I do do that is just go and go for a walk, you know, even if it is to like to go and pick up the baby from nursery after my working day, like literally just just go for a walk to nursery and walk back and just try and and zone out and be in the fresh air and just try and be mindful. I mean, it sounds so trite and awful. But like the lovely autumn trees and stuff, you know, just trying to like literally like ground myself in my, in my surroundings.

I love going, you know, just going out for a coffee or something. So just trying to find that time to just go and zone out. I love I still love magazines, I've always loved magazines. And you know, it doesn't feel like work to me to pick up a magazine. I've got subscriptions, you know, coming out of my ears, I've got piles, and piles, and piles of magazines, and it fills me with so much happiness just to even if it's just when I'm settling the baby to pick something like that up. And I think you know, as much as the baby does add an element of jeopardy to the whole situation because he's obviously a baby, he's unpredictable. Just having having to remove myself from the situation with the girls who are full on and care for him. It's actually quite nice. You know, it's not self care, per se, but it is a sort of special time that I really value. That's different.

Rina Teslica 1:01:58

That's so sweet.

Leisa Millar 1:02:00

Yeah, I mean, poor thing. I mean, well, he's I was gonna say he's threatening to walk now. So it's a bit of a race between him and B, who's going to start walking first because she's she's got her cast off now, still in a wheelchair, but having physio, so she's like, she's, she's got a walker, now she's sort of getting back into it. And he's standing up and doing his first few steps. So we're basically like, we're gonna take bets on who is going to be walking first, Bea or Casper but you know, there's so much these, these situations are difficult, but there's so, you know, this is my family, you know, this is who they are. And they're amazing. And all of these moments, I don't ever want to feel so cowed by the situation that I cannot find the joy in the fact that Bea is starting to walk at the same time as Casper and you know, that's really cute, you know, obviously, it's a horrible situation to be in to have to watch your, your six, nearly seven year old have to try and learn to walk again after such a, such a major and traumatic operation that I have put her through as her parent, you know, and then a lot of pain, and that's my choice to have had that done for her. But, you know, this is my family. And I'm so happy that they are.

Lauren Fenton 1:03:12

And so now, Leisa, I just wanted to ask as well, what do you think organisations and employers need to do differently to support SEN parents in the work environment? I've talked about some of my challenges that I had previously, and I'm sure you've heard from from other parents through interviewing them for the pod, but what do you think the world if you had a magic wand and could change how employers and organisations support and help parents to disabled children manage that alongside navigating their careers? What would you suggest?

Leisa Millar 1:03:49

Oh, well, I think first of all, they need to know they're there. You know, there's not necessarily any means of capturing that, you know, I've worked in organisations that that try and capture sort of protected characteristics in their employees and having a disabled child isn't, is not one of those. You know, I think, in some of the more recent surveys, I've seen, you know, caring responsibilities does come up, and that is absolutely progress. That's amazing. But I think in a lot of places that's not necessarily covered. There, you know, there are protections in place.

If I myself had a disability for me in work, there will be protections in place, but because my, it's my dependent who has a disability, there is no protection in place for me because of any of the needs that I have relating to that. And I would love to see that recognised. I would love to see some policy around that because because I have a disabled child, it doesn't impact on my ability to do my job. It impacts on my ability to sit in a particular seat for a particular, you know, number of hours in the day, you know, and I think it doesn't mean that I am any less capable and genuinely it genuinely makes me feel so angry when I think of all the women who could be working, who should be working, you know, and it's not just for their benefit, it's for the benefit of the economy, for industry for, you know, all the great work, they could be doing. All of the education we've had, all of the years of experience and striving, and because of the hand that we are dealt, we have these challenges that other parents don't have. And I would love to see some kind of policy put in place to allow mothers in that situation or parents, you know, parents, not just mothers, but we know disproportionately these caring responsibilities do fall on mothers. This is why specifically I you know, it's the SEN mums career club, because I think women in work is a very particular topic, not just parents in work, I want to talk to women in work, we know that there are additional challenges for us as women, but I would love to see policy in place to protect parents who have disabled children in work

Rina Teslica 1:06:01

That leads us actually really nicely into your F**king normal then

Leisa Millar 1:06:04

My F**king normal is having to be an Oracle on Strictly Come Dancing at this time of year.

Bea is obsessed with strictly it's her thing. So she lives and breathes it we watch it every single day, even when it's off season. Thank God, there are new episodes to keep us going. But she knows everything she knows every one she knows, every season, she knows every dance. We'll be in a shop and she'll hear the music and to be like, hey, it's Mark and Karen's dance, and there's like, I was 10 years. That was before you were born. How do you know that? She knows. And if I don't know, she's angry with me. She's crossed and she thinks I don't understand. And I'm like, I do understand. I just my brain cannot hold that much information. She's brilliant.

Rina Teslica 1:06:57

That's so cute.

Lauren Fenton 1:06:57

She sounds great. Great. I mean, obviously, I have a Bea as well. And so great choice of name. Although we're Beatrice, not Beatrix. But yeah, we love strictly in our house to the gills. I mean, at my Bea basically forced to be whatever partner and do whatever dance Olivia is choreographing copying from the screen. And I have a paddle and I have to score them out of ten.

Leisa Millar 1:07:18

Amazing.

Lauren Fenton 1:07:22

Get a paddle. Good Chrimbo present for Bea there. Thank you so much, Leisa. That was beautiful. I think it's been lovely talking to you. Having heard your voice in my ears as I go out for my walk or my run. It's really nice to get to know you in sort of on the screen, slash IRL. Yeah. And your insights and those that you've kind of also adopted from those that you interviewed have just been really, really interesting. I'm sure we could have spoken for a lot longer. Thank you. .

Rina Teslica 1:07:58

Yes. Thank you so much for your time. It's been very enlightening and educational if I can say that. Yeah, you've been great. Thank you.

Leisa Millar 1:08:07

Thank you so much. I've I've loved every second. Thank you.

Lauren Fenton 1:08:17

Thank you so much for listening to the fucking normal podcast. We love making this podcast. Yes, we do. We are part of a much bigger team, almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences.

Rina Teslica 1:08:38

So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at fucking or podcast.com That's f k ing normal podcast.com you can join us on Facebook and on Instagram at fucking normal underscore podcast. That's F K ing normal underscore podcast. You can get all the links and more information in the show notes below.

Lauren Fenton 1:09:01

So thanks so much for listening all the way to the end. We'll see you next time.

Music to play out...

Transcribed by https://otter.ai

Episode 17: Sandwich caring with rachel pears

~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Lauren Fenton 0:01

Okay Rina, you seem stressed. What's going on?

Rina Teslica 0:05

Do you ever feel that parenting disabled child is chaos like absolute paperwork chaos? There's just so much admin. On top of caring for your kids. It's like, I'm my frickin daughter's PA.

Lauren Fenton 0:20

Ah, yes, you should try the new Hibi app.

Rina Teslica 0:25

An app?

Lauren Fenton 0:26

Not just any app, it's disabled. Parrington mega pa organisation, so you can schedule appointments, have reminders for your medication. Have all of their medical notes and letters in just one place?

Rina Teslica 0:40

Hang on. spell this out to me again.

Lauren Fenton 0:42

Hibi H I B I It's a disabled parenting organisation app. I wish I'd had it when he was younger. It gives me a sense of control over well, the uncontrollable.

Rina Teslica 0:55

Sounds intriguing. Who doesn't want to organise disabled parenting chaos? One notification at a time?

Lauren Fenton 1:01

Haha. Yes. It's my new sidekick Side kicking the shit out of Disabled Parenting organisation.

Rina Teslica 1:08

That's the least catchy strapline I've ever heard Lauren.

Lauren Fenton 1:12

Yeah okay, fair enough. They won't want it. But if you like Rina, and I want to give it a go, you can download Hibi for free on the app store now.

Lauren Fenton 1:28

Since recording this episode, Rachel's father has sadly passed. Our love and heartfelt condolences to Rachel and her whole family. Please do visit dementia uk If you would like to make a donation in his memory.

Rina Teslica 1:48

Today, we're talking to Rachel pears on sandwich caring and the challenges that she's faced as an only child, when both her parents began to get older and more frail. At the same time as that her daughter was also being diagnosed with a genetic condition.

Lauren Fenton 2:04

Yeah, she really got catapulted into being this carer for three people, which as she described it, was extremely challenging. And it led to her actually having proper carer burnout. It really got me thinking about how much we will have similar potential challenges coming down the line, they talk about the sandwich generation of parents of dependent children who also then look after ailing or elderly parents. And, you know, in our case, those dependent children are going to be dependent beyond childhood and have needs for much longer. So it something that we probably if we're not already dealing with probably have to prepare ourselves for I'm definitely guilty of wanting to take on too much, mostly because I'm a total control freak. And I want to be in control of everything. So I think the some of the things that we talked about with Rachel, like asking for help and thinking about ourselves in that scenario is quite key.

Rina Teslica 3:07

Yeah, agree. It was really interesting. And it made me think about my own mum and my mother in law, actually, because both of them have parents who are getting to that stage where, you know, they're needing more help. But with the added pressure of not living in the UK, and then that has an impact on my life, because both of them I rely on for respite and babysitting duties and things really, really interesting. And I didn't look at it as sandwich caring until a conversation with Rachel. Yeah. And other people do it so automatically without actually realising what it is that they're doing.

Lauren Fenton 3:44

They don't... some people don't define it as caring I guess. And traditionally people would look after family it's like that's that's what you do you look after the old as they get older and you look after the children. I think it just as often is the case. There's this additional intensity and this additional dimension when the care needs of your children or your dependents or are so significant. We also look after Patrick's mum, occasionally we are not by any means her like primary carer that's done by his brother and sister in Ireland but she has dementia and has needs full time carers and we have her over for like a fortnight at a time and take on that Karen responsibility which isn't it's not easy, like managing somebody elderly full time and then also having your children tick to care for and look after it. But then there is overlap and parallels

Rina Teslica 4:41

Well it's that Benjamin Button thing isn't it like they revert back to those childish needs? It's yeah, the circle of life.

Lauren Fenton 4:49

We definitely have I guess built some skills that will help us with that. I feel like the the organisation the thinking about accessibility when you go places like with demand issue as well, I guess like managing where somebody needs to go and being in familiar surroundings and all of those kinds of things that are very relevant when you're looking after a child with certain needs is like whether we can find hours more time in the day. That's another matter.

Rina Teslica 5:16

What I really liked from the episode is Rachel making we realise that self care doesn't have to be like a specific carved out time of the day or the week or whatever. It could be just finding little joys in life, you know, small things, listening to a piece of music, or like Rachel does, making sure that she has a slice of pizza from my favourite pizza store. We forget to do the little things. Our eyes are constantly looking at the bigger picture and not living in the moment.

Lauren Fenton 5:46

Yeah, I agree.

Rina Teslica 5:49

It was a really eye opening conversation. Enjoy.

Lauren Fenton 6:11

This is the fucking normal podcast, the cheers, tears and Friday night beers of parenting disabled children.

Rina Teslica 6:19

I'm Rina, and I'm Lauren. And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories and chat about the things that we've learned and are still learning.

Rina Teslica 6:35

Prepare to sometimes laugh, sometimes cry, but hopefully leave with a shot of optimism in your arm. And don't forget we are talking from a parent's perspective. We would never presume to talk on behalf of a disabled child or adult. So expect bad language and quite frankly some brutal honesty.

Rina Teslica 6:54

Because really what the fuck is normal anyway?

Rina Teslica 7:10

Our guest today is Rachel Pears who is originally from New York, but has been in the UK for more than 20 years now. She is an employment lawyer who works as a head of responsible business for RPC, a commercial city law firm, as well as the firm's in house employment council. She's mother to almost nine year old Amelia and lives in London with her husband, Amelia dad, Peter, Amelia has a mutation on her gene ARHGEF9. And with this has learning disabilities, autism, low muscle tone, hypotonia and hypermobility.

Lauren Fenton 7:43

Six years ago, when Amelia was three, and Rachel was seeking a diagnosis for her, she faced another significant curveball in her life, her father became ill with cancer and dementia. And as if that wasn't shocking and challenging enough having those two parallel diagnoses going on her mother, younger than her father, whom she had thought healthier of the two and able to care for her father received a diagnosis of Parkinson's disease. And as their only child, Rachel was catapulted into finding ways to care for both her ailing parents remotely, making regular us trips at the very same time as coming to terms with their daughter's diagnosis and caring for her in the UK. In Rachel's own words, she felt like she was competing in the caring Olympics. She eventually and fortuitously took the decision to move her parents into her home just before COVID, lockdown struck, and has now established a team of helpers in the USA to make this work. But as Rachel would describe, it hasn't always been so smooth, and it's taken a long time to get there. So Hi, Rachel. Hi there competing in the caring Olympics. How is How is everything going for you at the moment? How's Amelia?

Rachel Pears 9:02

Yeah, it's like competing in the Olympics. But somebody tells you the day before you're competing in the Olympics.

Lauren Fenton 9:09

Yeah, you haven't got the training!

Rachel Pears 9:12

Yeah, thank you for having me. I'm well, thanks. And Amelia is really good. She's. I feel like she gets sort of funnier and cheekier and more imaginative every day. Yeah, she's she's absolutely amazing. She's currently into Barbie and games on her iPad. Hide and Seek because there's a big favourite, and usually kind of acting out pretend stories usually involving her being a pop star.

Rina Teslica 9:42

Nice. I love that. I love that, Living my inner inner childhood dreams. Absolutely. Amazing.

Lauren Fenton 9:50

Doyou get to be a backup singer or eh?

Rina Teslica 9:53

Or do you just watch?

Rachel Pears 9:55

I mean, I try and follow the steps but usually I get them wrong. Um, but yeah, sometimes I'm security, you know, I take different roles.

Rina Teslica 10:06

I love that

Lauren Fenton 10:09

Very much like life.

Rachel Pears 10:10

Yes.

Lauren Fenton 10:13

Can we just step back and get the context and the timeline? So what first kind of made you feel like you needed to do these investigations for Amelia, take us through that as well as then what happened with your parents?

Rachel Pears 10:27

Of course, so you try not to compare your child to others, but you know, the other babies around kind of nine months, you know, you start to notice they're becoming much more physical, they can start to crawl and, and some of them were even sort of totaling around. And she just seemed to really struggle. I mean, she wasn't remotely kind of crawling, hated, tummy time isn't standing. And I went back to the GP a number of times, probably about four or five times to say, I'm, I'm concerned, I think there's something that's not quite right. And each time I got fobbed off as a sort of Tiger mummy, you know, like, "calm down, you're just to new neurotic mother, you know, they all develop at different rates." But I just sort of had this feeling in my gut that it there was something not quite right. And, I mean, I had no idea what it was, but obviously, you know, I wanted to try and find a way to support her. It wasn't until her 12 month Health Visitor check, actually that that catapulted us into the worlds of the NHS and all of the investigations because she scored a zero out of 60 on her gross motor skills test and in that development check, that was actually just after the health visitor suggested that any developmental delays might have been my fault that stimulated.

Lauren Fenton 11:49

We hear this so much. It's terrible.

Rachel Pears 11:52

Yeah.

Lauren Fenton 11:53

you feel like you've failed the test.

Rachel Pears 11:55

Definitely on me. Yeah, yeah. So yeah, so we got referred to a community paediatrician again, I just sort of thought my husband and I both think sort of just thought like, oh, well, my mother used to be a ballet dancer. So I thought, oh, maybe she's just a bit hypermobile. She'll just be really flexible. Go on to be a ballerina. Prima ballerina. Yeah. And we were quite surprised at that. First, paediatricians appointment, because then, the paediatrician sort of reeled off a whole list of quite terrifying sounding conditions that it sort of could be. We didn't have any sort of feeling like it might at any point be that serious, I think we've kind of gone in thinking, Oh, she might need a bit of light physio, you know, and they just are like, Well, it could be this, it could be that and you're like, oh, okay, that's brand new information.

Rina Teslica 12:51

So you did feel kind of like blindsided by her potential diagnosis.

Rachel Pears 12:56

I think that was quite a shock. Because, yeah, you sort of get thrust into, especially when you get into the sort of, like, sort of, say, like, the upper echelons of the NHS, when you're seeing like, the big celebrity type doctors who are, you know, they come in with their teams of people, and they're all very intimidating. You just never really expect to be there to sort of

Lauren Fenton 13:18

Gold card membership!

Rachel Pears 13:21

So yeah, you get you get sort of to see people whose job titles you didn't even know kind of existed. But yeah, we did the usual sort of, you know, all the all the investigations, or the tests, lots of speech and physiotherapy and all different things, and then finally got the referred to the genetic side of things. And that's when they discovered her mutation.

Rachel Pears 13:44

Yeah, then, then it's fun, because then you get to Google what it is, which is like reading another language. Good. Oh, Google. I know! In Amelia's case, it's quite rare condition. It doesn't have a bit of sort of official name. We're on a sort of Facebook group with other families around the world, which is quite fascinating. And it is a mutation on the X chromosome, so it tends to affect boys more severely than girls. And yeah, causes sort of a number of challenges.

Lauren Fenton 14:16

Processing and going through all of this, as we all know, is a very difficult time in our lives, just that that curveball and not quite how you saw your journey of parenthood working out. So then when what happened at this period in your life related to your parents?

Rachel Pears 14:34

So urm my mother actually had Parkinson's diagnosed for my father, but it was very mild and so it wasn't really that debilitating, I would say for a number of years. So she was really active in her retirement and actually really, like on the ball in terms of all the sort of self care you're meant to do. So for Parkinson's Um, it's a neurological condition. And it's known sort of traditionally through the tremor as the sort of most commonly, I think identified side effects. But it affects everything I mean speech and movement and thinking and swallowing, and all different kinds of things. But she was doing all the right things to do lots of exercise, lots of kind of Mediterranean diets, all sorts.

My dad then had a fall and fractured a vertebrae in his spine, and was then sort of bed bound for about nine months kind of recovering from that, from that break. And I think that was probably when his health really started to deteriorate. And the symptoms of his dementia sort of started to surface. And at the time, we didn't know it was managed to, but we definitely could tell there was some difficult and challenging behaviours emerging. And so slowly, my mom wound up having to kind of drop all of her personal care, to sort of care for him, I was travelling back and forth to try and bring in sort of different aides and resources and things to help and, you know, trying to kind of patch things up. But inevitably, kind of, then come home. And, you know, a month later, it's moved on again. And so you need to go back and kind of address the latest, the latest sort of situation, it was starting to be a bit of a juggle, I would say, as my dad wound up, struggling more and more, and then and then my mom stopped doing all the things that you do to kind of keep it Parkinson's under control,

Lauren Fenton 16:39

Gosh, then what happened with your parents?

Rachel Pears 16:42

So then yeah, my dad wound up having a number of falls after that he was quite weak and unsteady on his feet and, and one fall in particular, led to him breaking his hip. And that was kind of the crisis point, I suppose, where he wound up in hospital, he had to have an emergency hip replacement. And I think, from what I understand with with people who have dementia, as soon as you kind of take them out of their familiar surroundings, they stop being able to kind of fake it. So he was completely discombobulated, you know, new surroundings, busy hospital, general anaesthetic doesn't really do great things for people on the older end of the spectrum. So yeah, he couldn't hide his dementia anymore. It was it was quite clear. So he, he never returned home, he went, went to rehab. And, and my parents had six months apart, which they found really difficult.

Rina Teslica 17:43

What was that? Like? I mean, I think for us, as parents of special needs, when you get your initial diagnosis, it can be incredibly overwhelming, but then to have not only that, but then also be dealing with your parents.

Rachel Pears 17:58

It's funny, because when I think when you're in it, you just sort of like, well, this is just my life. So I'll just sort of try and make the best of, you know, a difficult time. And obviously, I didn't know, sort of, at that time how long it was going to go on for or kind of what what we were dealing with. I mean, Amelia, we were probably, you know, doing investigations for her for about two years before we had a diagnosis. So part of my parents journey was sort of overlapping with Amelia is, you know, kind of investigations and therapies rather than kind of having a diagnosis. So it was sort of a bit of a sort of slow burner, in a way because it was, you know, as I said, is a bit of an evolution and so probably helps get your brain wrapped around what's going on. That being said, it has been quite intense at times, definitely I was before COVID, flying back and forth to New York, probably every month or two, and trying to do lots of appointments for Amelia and trying to get to kind of the bottom of some of the things we were seeing with her and trying to hold down a full time job.

Rina Teslica 19:17

But yeah, forgot about that one.

Rachel Pears 19:20

There were a few hats being being swapped quickly around. So yeah, it was it was definitely a very overwhelming time.

Rina Teslica 19:29

What was your employer like, at that time, because I feel sometimes they can be really, really understanding and other times not so.

Rachel Pears 19:37

I have been incredibly lucky actually. So my firm and my kind of immediate manager have both been really brilliant, really flexible, really supportive and kind of empathetic and gave me the space and the trust to kind of work how I needed to work. So if I needed to kind of go to a hospital appointment or if I needed to kind of go to New York for a long weekend or something I just worked as I needed to. And if anything, it made me want to work harder to sort of show that they're trust in me wasn't sort of mislaid. And you know, it's kind of really proved that it was fine. And I could manage it, I just needed to sort of have a bit of space at certain times. I was just so incredibly grateful, because it felt like quite a vulnerable time for me when I was sort of having to juggle lots of different things that, frankly, you can't deprioritize they're your family. So that's actually been a really positive?

Rina Teslica 20:37

Was it your decision to put them in the care home? Or was that something that your mother and you decided on? Or was that pressure from the doctors? How does that work? How did you come to that decision?

Rachel Pears 20:53

So just before the end of 2019, my mum took the decision to move into a care home with my dad, he went into the memory care unit, which is a sort of secure unit for people with dementia, and she has a sort of assisted living apartment, the floor above where she has aides who help her with her daily needs. I I've always sort of tried to take, you know, a sort of supportive backseat with them. So I try and be as respectful as possible of their independence and their decision making, I never want to kind of go in and be like, right, this is how it's going to be done. I know best. It was my my mum who found it really difficult. She was in the apartment. In New York alone, dad was in this rehab place, she was finding it really exhausting travelling out to see him regularly. He was struggling without her. It's actually a very beautiful love story. So it was actually her decision. And I kind of helped as much as I could, in terms of, you know, scoping out possible care homes in the area, and, you know, visiting them with her.

Rina Teslica 22:05

That does make it slightly easier. Yeah.

Lauren Fenton 22:06

I mean, so you're processing things at either end of the spectrum. And I just can't imagine what that must have been like, definitely feel when you have a child, any child, when you have children, you start to it starts to bring in to focus your parental relationships, and you reflect back on how your parents brought you up and your child state and all the rest of it, obviously, there's there's a whole different kind of light potentially shone on that with erm, a child that has a disability. And likewise, as your parents are getting older and unwell, it must have felt like quite a period of huge change in terms of sense of loss around your parents as well. And that will obviously make one reflect. So you're doing these things, which really bring kind of focus to your parental relationships. How was that? Does it feel like similar things in part were happening in parallel?

Rachel Pears 22:59

I mean, yeah, things are definitely happening in parallel, there were definitely some kind of common themes. It sort of felt like I was just jumping from here, there and everywhere. To be honest, it felt quite frantic. That's kind of my strongest memory of it back then. Especially because with my parents, it always felt like on the edge of a crisis at any moment, because that, you know, their, their needs were increasing. And especially with with my dad, he was having so many falls and his behaviour was challenging. We were having to call ambulances weekly, pretty much before he had his big fall. So it always felt like it was sort of living on the edge really not kind of in a fun way. But it was yeah, a lot of a lot of limbo as well, I would say was one of the common themes. I mean, I found Amelia's diagnosis actually quite liberating, because I finally knew what I was feeling all along, which was that there wasn't, you know something that was the same as the other children. That's no bad thing. But it's, you know, you sort of don't know what you don't know until you know, and so actually, I found the diagnosis actually really reassuring and relaxing in a way because I felt, okay, now I know what we're dealing with cool. We can make a plan and you know, I don't I don't do well, I think with the unknowns and the grey area, the grey space. And you know, you always sort of go to catastrophizing the worst possible scenarios, when actually it's never like that really.

Rina Teslica 24:38

You felt vindicated.

Rachel Pears 24:39

Yeah, so I mean, and my parents were kind of similar in terms of, you know, you just never really quite knew what was next. No one can really tell you what, what's going to happen tomorrow or in a month's time or you know, what the best thing is, one of the challenges of being an only child is that as they wound up being less able to make decisions for themselves that fell more onto my shoulders, which is the I'd see it as a huge responsibility, you know, you want to kind of do right by your parents and, you know, even in the end of life should be as, hopefully as joyful and kind of happy as possible. And obviously, that becomes more challenging as you have health conditions. But yeah, you want to kind of do the right thing. So it's hard because you're kind of on your own trying to navigate all those things in your head.

Lauren Fenton 25:36

Did you define yourself as a carer? Or do you define yourself as a carer for Amelia as well as your parents?

Rachel Pears 25:45

Yeah, I probably do. I think I mean, I, I certainly care for Yeah, I think everyone really, I mean, Amelia, hopefully will go on to care for me one day. And bring me lots of martinis in my old age. But But yeah, my parents, I mean, I manage all of their affairs. I'm power of attorney and, you know, everything kind of is, sits with me now pretty much. And of course, I, you know, defer to them as and when I can do and it's appropriate and safe to but yeah,

Lauren Fenton 26:18

yeah, struck me just when you were talking about making sure that your parents, you know, that you didn't march in and just kind of make the decisions. It's obviously when you're caring for a child, it's quite different, because then their capacity to make those decisions at a young age, like any child has is very, very limited. But it's obviously as Amelia gets older, it's almost like then you start to think about their autonomy and their decision making in that process. So I guess you've experienced that already with your parents. And a lot of us may may also experience that at the other end of the spectrum. It must have been incredibly hard to prioritise everybody's different needs. How... when you had to travel back and forth to the states, what was the impact on Amelia of you having to do that?

Rachel Pears 27:02

That, that was probably that's probably been the hardest piece of it. I mean, aside from obviously, you know, the emotional piece of coming to terms with your parents ageing, and becoming unwell, of course, is, is super hard. But but the travel was was tough. I'd love to be in two places or more at the same time. And so the inability to not be able to kind of split myself into two or clone myself was was a real sort of difficulty, I think. Because, you know, I would love to be in New York more and be with my parents more and be able to support them in real life IRL. But yeah, every time I travel, it's really hard on Amelia and me, I miss her terribly. And you know, and I know she, she finds that difficult when I'm when I'm gone for periods of time. And so you do always just feel like, you're never quite doing enough in any particular place. You're sort of spread too thin. And I know. Yeah, I'm sure lots of people feel like that. It's even just working and parenting. And you know, it's that classic parent guilt, isn't it? Where you sort of want to be in two places at once. But this was sort of wanting to be in three or more, so yeah, that's been the hardest. I mean, not you know, and not to mention, it's just really tiring, travelling, internationally that regularly with the time difference and then working and yeah, I was doing some pretty brutal, like, sort of 8pm flights back to New York, where you landed 11pm. It feels like five in the morning, you've got three days to kind of run around, get a million things done. And then I catch a red eye flight back and work the next day, and it's just absolutely exhausting.

Rina Teslica 27:19

Oh, my God.

Rina Teslica 28:25

That is horrible. It sounds like you. You talked about before you liked you don't like grey area and expected you'd like a plan. It sounds like you had to kind of well, you must have had to organise the shit out of things to make things work. Is that it? Was that a coping mechanism to kind of throw yourself into like you maybe have done in a work scenario?

Rachel Pears 29:17

Yeah, definitely. I mean, probably to my detriment a little bit. I think I've probably used being really busy is almost a crutch and a coping strategy. So, you know, it's really difficult, especially when it goes on for a long period of time. You can't you can't just constantly be emoting. You know, it's sort of, you sort of have to kind of get quite good at compartmentalising things just so you can get through your day and do what you need to do. And so I think that's been a challenge in terms of doing that in a measured way so that you still are processing some of what you're feeling is at the same time as sort of trying to kind of get things done. And, you know, certainly with my parents I've inherited two other people's personal admin, which I mean is crazy, because I can barely keep on top of my own. But, you know, so there is logistical stuff that you know, and it is busy that you have to do but, but yeah, I definitely use busyness I think as a way to kind of not have to deal with things and and then that just kind of led to me burning out really trying to burn the candle at every possible end. Some of us perfectionist kind of control freaks. You know, they're like, I'm gonna do, I'm gonna do caring really, really well. I'm gonna be the best at caring. And

Lauren Fenton 30:43

You were competing in a lot of events. So you know, you had a good chance that that gold medal was

Rachel Pears 30:51

What is the sport where you do like 10 different in athletics, is it the decathalon?

Lauren Fenton 30:57

Decathlon, triathlon? Yeah, yeah yeah.

Rina Teslica 31:00

A millionathalon?

Rachel Pears 31:01

Yeah, I've pretty much just spinning a lot of sites. So yeah, I think it's a slippery slope. You have to I mean, busy is good and can help. And it is just realistically busy, but I think you have to kind of keep an eye on it as well, because it can also it can start driving you rather than the other way around. Yeah.

Rina Teslica 31:23

Did you get to a point where you just realised I can't, I can't do this anymore. I need some help. Like, what was the the light bulb moment? Was it something that had happened, you know, in terms of Amilia's care, or your parents? But was there a moment in that period where you were like, I've had enough, I cannot physically be in a million places, I cannot keep spinning these plates.

Rachel Pears 31:48

I had a period of burnout, which I mean, I didn't sort of it wasn't like me making a decision about it. I probably should have done earlier. But yeah, that was probably my body just being like, No, thank you. We're done now. So I yeah, I took three weeks off of work, work, were really nice about it, and really supportive. And I just tried to spend that time. I did a lot of therapy. And I did a lot of running and just tried to kind of really focus on getting myself a little bit clearer in my head around how I was going to deal with all of this. And you know, and part of that is talking about practicalities of care, and help and, you know, hacks around how to make things easier, find shortcuts and things. And part of it is actually and I did this obviously, with the help of the therapists, but kind of finding ways to give yourself a bit more compassion and permission to not do everything, to the best possible degree all the time, because it's frankly, impossible. So, you know, just kind of getting happy with things being good enough sometimes and that's okay. Because you're just one person.

Lauren Fenton 33:05

Yeah, there's the giving yourself compassion and a break. There's also recognising the emotional turmoil that and processing that so it sounds like that you were so head on in the I'm gonna care the shit out of everything and deal with everything in a like uber organised way that you didn't maybe gave yourself space for processing what was going on both ends of the spectrum,

Rachel Pears 33:35

No. Definitely I didn't and I mean, you know, it's, it's not a comfortable you know, it's an uncomfortable place to be, it's not like you really want to sit around and process feelings of, you know, grief and whatever else. But, you know, you kind of have to and, and certainly, you know, as as, I mean, as you watch parents get older and kind of come sort of more of an end of life stage. You know, it's it's something that's, unfortunately a kind of inevitability about having to kind of cope with with that stage of things. And it is it's, it's tough, but I think it's gonna come whether you're open to it or not, so you kind of have to just get there however, you can see, you can't really go around it.

Rina Teslica 34:31

Yeah, it's, it's hard because parents of disabled children, not only are you grieving your parents getting older and that inevitability of death on that end, but you're also grieving I certainly did, grieving the life that you had imagined that you would have as a mother because it's been thrown in the furnace and burned because it's just not what you had imagined at all. So there, you must have been going through two different types of grief at the same time, which must have been so incredibly overwhelming, absolutely,

Rachel Pears 35:06

You sort of, you know, you visit certain things for life is like, right when I'm this age, I'll have these things and I'll have this this relationship, you know, whatever. And certainly, as a parent, you never want any barriers or hurdles put in your child's way you want the world to be their oyster, you want them to have every door open as a child, you know, with your parents, having to sort of flip the roles and become parents to your parents is not, it's not a natural place to be, and it's uncomfortable as well. There's sort of, yeah, you definitely kind of feel a sort of loss as well, in terms of, you know, I mean, I think my mom would have loved to have more time as a grandmother, with Amelia which I feel really sad for. For both of them. Frankly, we're missing that time. So yeah, there's a lot of things that you know, this what it is, but it's not what you pictured.

Lauren Fenton 36:10

What's the relationship, like between Amelia ano,

Rachel Pears 36:13

um, so the last time we were all there, she was there with us was in 2019. So actually, we went over for my father's birthday, when he was in hospital recovering from his hip replacement. Yeah, so she was there. She was four and then COVID hit. She hasn't been back since. But hopefully, we'll we'll get back again soon. I mean, my dad's not so great with tech anymore. But with my mom, we still FaceTime and, you know, try and do the odd virtual dance party. So. So yeah, they have. Yeah, she knows she knows and loves her grandma. So

Lauren Fenton 36:57

Beautiful. I mean, it's just, it was just reminding me, my story is very, very different to yours. But my husband's mum so my mother in law has dementia. And every so often, she comes to stay with us, and we take on the care so that it's not all falling to his brother and sister. And one of the things that I find quite beautiful when she's here is she's in the moment, of course, because her short term memory is shot. So it's, you know, everything is kind of the here and now or reminiscing about a long, long time ago. And as adults, I think we find that quite hard to you know, remember in conversation and not go into that short term memory but but with Bea her life is 100% in the moment as well, you know, it's like right now. So the way that they interact, it's, it's actually rather beautiful. It's just, you know, they don't necessarily understand each other all the time. But it's, it's just filled with love and in moment fun, which is, is a good lesson for us all I guess.

Rachel Pears 37:55

I mean, some of the sort of some of the flip side of it, I think is you get a glimpse into, like this totally alternative universe. And certainly like, you know, when you get a diagnosis for your child, I have learned so much more about all sorts of aspects of her world that I had no clue about, and now I'm better for it. And similarly, you know, you get to, I think, celebrate different things. So it's not, I think, and I'm trying to look at it in a, it's not less, it's different. So it's, you know, I look at my parents, like, my dad's not really particularly verbal anymore. But he and my mum sometimes go to concerts together at their care home, and they just hold hands, and like smile at each other and it's literally the sweetest thing you've ever seen. But, you know, you almost kind of don't need much more than that always. Sometimes you can just have quite a beautiful moment in something really small. The purest moment. Yeah, it's really pure absolute. They, you know, they just see each other and you can see, like, you know, my dad doesn't remember much at all, but he remembers my mum still in his face lights up when he sees her and it's just like, Oh, come on, guys. You're making us feel bad!

Lauren Fenton 39:24

The body feels what the mind can't necessarily process. That's amazing. Absolutely, yeah. And how are things Now you sound like in a much better place than obviously things?

Rachel Pears 39:37

Yes, definitely. I'm out of limbo a little bit more, which is a happy place for me. Yeah, Amelia is doing great. She's the light of my life and absolutely just incredible and such a strong little character. I love it. So yeah, it's great kind of watching her grow and experience the world. And my parents. I mean, you know, it's sort of beautiful and sad, I guess. So. Yeah, my dad's now in hospice care. And he's still kind of stable. But there's a bit of limbo there still, because you don't know what's coming next, we don't really know how much longer he has. So, yeah, just trying to kind of go back over a little bit more at the moment just to see him. But it feels like, I've kind of come to terms a bit more with the situation, it doesn't mean it's not sad anymore. But I kind of accept a little bit more of what's happened. I think as well, the relief too and I know they're in a good care home, so they have the care that they need, and that I know, they're safe. I know, they're healthy. I know, if there's an issue it's picked up, you know, all of those kinds of things are, are in hand. So that's a real reassurance for me.

Rachel Pears 41:04

What about you?

Rachel Pears 41:08

Who?! Kidding.

Rina Teslica 41:10

How have you managed to find space for yourself? And how have you been able to delegate? What to kind of let go off but not not let go of but pass up that baton of responsibility to somebody else.

Rachel Pears 41:25

I think there's truth in like, it takes a village, both I think on any end of the caring spectrum. Obviously, in this kind of global world we're living in, you know, we don't have our usual home village anymore. So you kind of have to, like, befriend a village, pay for a village or, you know, beg for a village or whatever you need to do. But you need to find your little, your little crew. So yeah, I mean, in New York, like there's some very practical logistical challenges that I have that I need help with. So you know, I can't, I can't be there to open their mail. I can't be there to go to the drugstore and fill a prescription. It's incredibly complicated when I you know, if we need to make a doctor's appointment, and you have to arrange transport, and you have to arrange an escort, and you have to arrange a million different things. So I have people in New York who can help me with that. Some are friends, and some are people who I've hired. And, yeah, I mean, you just, there's literally no way you could do it all yourself. And I think that that acknowledgement is the starting point. Otherwise, I mean, I just I think I've gotten better over the years through trial and error, probably, at trying to prioritise you know, my own, like, it's, it's a cliche, of course, but you know, you can't, you absolutely cannot pour from an empty cup. And you, it's essential to care for yourself when you're caring for other people. So it's not a selfish act. It's, it's just a necessity, and it's something that makes you more able to be a carer. So I do try and prioritise things, I have a wonderfully supportive husband, which I'm very lucky to have he and I share the load and juggle and so if I want to go and do a run or whatever, then you know we we share that?

Lauren Fenton 43:30

Has it been an impact on work going forward?

Rachel Pears 43:32

I work four days a week now. So I've dropped today. So I try and almost compartmentalise the admin, the New York admin is my New York admin day. And, and that's that day, and then I don't have to kind of think about it the rest of the week.

Rina Teslica 43:51

So Rachel through all that having experienced so much, is there anything that you have learnt or wish that you had known or some insight that you might be able to pass on to somebody who's going through something similar to you?

Rachel Pears 44:06

Yeah, definitely. And obviously, I put a big caveat on that because I recognise fully that I'm coming from a place of privilege in terms of, you know, the fact that I have a supportive employer and I have a supportive husband and I have the ability to sometimes hire the help that I need if I need it. So take it all with a pinch of salt. It's just my kind of personal experience, but for anybody kind of organisation as you kind of mentioned earlier is is really essential. And even like the really kind of boring bit, you know, like with parents, you know, get estate documents in order, get your powers of attorney done, you know, if there's DNR s or health proxy forms, take copies of like important ID and insurance cards or anything like that, because I found that you know, all of a sudden I was having to make decisions on things and sometimes you need people's details.

Lauren Fenton 44:24

That's so true

Rina Teslica 44:28

So practical.

Rachel Pears 45:06

It's very practical. Yeah.

Lauren Fenton 45:10

I guess on the other end of the spectrum with Amelia and with our children, we were setting all of that stuff up from scratch from day dot, you know, seeing a different version of being a carer coming down the other end of the line, it's really important,

Rachel Pears 45:22

I'm sure lots of parents, I mean, even, you know, lots of parents of neurotypical children do probably have pull files and folders of their kids, you know, of all the different sort of categories of of their child's you know, like important documents, they've got medical things, they've got, you know, activities, all sorts of things. And it's, it's kind of similar, but maybe a little bit more depressing with estate planning and do not resuscitate orders. But, you know, it's sort of the same principle in terms of just you know, having having stuffs to hand before you actually are in a place of really needing it. Because that's been really helpful. And it was a bit of advice that a family friend gave me and she was absolutely right. I think as well like talk to friends, or other family or neighbours, or whoever you can kind of before it is a crisis situation and kind of scope out who's willing to help and how they can help because I think it's better to know who you can call on before you're actually in a moment where you're just frantic and or, you know, there's sort of not enough time or whatever else, I think it's better to kind of have your phone a friends kind of identified earlier. On both sides of the spectrum. I think caring is often pretty synonymous with advocacy. And so expect to have to battle and question and push and follow up. You know, you always do, no matter who you're looking after have to sort of stay on top of all the detail and one step ahead. So you know, you're constantly pushing things forward.

Lauren Fenton 47:03

What about for...

Rachel Pears 47:04

for me?

Lauren Fenton 47:05

Yeah, What about you? looking after yourself?

Rachel Pears 47:09

I was coming to that. Yeah, I think carve out time for yourself, however you can. And I think I mean, what I've learned actually, on this journey, is try and be a bit more kind of conscious or mindful are like, sort of specific around where you can find something enjoyable. And I know that's not always possible, but like, I mean, when I go back to New York, you know, sometimes it's it's really difficult trip, but I always make sure I go to my favourite pizza place. And I know it's like a really small thing, but I really enjoy their pizza. Just for like, that. 10, 15 minutes when I'm there. I'm just it's just quite pleasing and happy. So,

Rina Teslica 47:56

you live in the moment, so you don't think about anything else.

Rachel Pears 47:59

Exactly, yeah, find that little bit of joy somewhere,

Lauren Fenton 48:03

Self care's the pizza you like,

Rachel Pears 48:06

Absolutely. Sometimes is just a really cheesy pizza. Whatever it is, find the sort of things that can make it a little bit more enjoyable. And sometimes it's more just having an appreciation for someone sometimes having a joke with somebody and just have, you know, just be really kind of almost present and cognizant of that moment. I just went back to New York, in the end of November. And, you know, it was a really hard trip. It was the first time I saw my dad after he had been moved into hospice care, but we just had a really nice smile at each other and even just that I was like, I'm just kind of take a kind of real picture of this in my head. So I can go back to it in future and doesn't negate the difficulty of the trip. But it's just a nice other side of it. And I think expect people to surprise you in all different ways. Sometimes people will, who you expect won't will possibly disappoint you. But other people really amazingly rise to the occasion and are like you're essentially new village and your new family. Sometimes people won't understand sometimes people will ask really silly questions. Sometimes people feel totally uncomfortable. And there's sort of a whole range of responses that you kind of have to get used to responding to and that might be the new normal and that's kind of okay, you know, you have to sort of just evolve with it and roll with it. But I think it's key to sort of know who your people are who kind of show up

Lauren Fenton 49:38

Yeah, yeah, amen. That's that's that's so true, gosh you've been through a lot and still going through a lot and I'm I really appreciate you coming on the fucking normal and you know, sharing with such candour your experience and that emotional. Oh, I don't like to use the word journey but that emotional path that you have found yourself on, so thank you. It's been really lovely chatting and I will next time do it over a few beers either you come north London a week I'm in South London we need to make this work.

Rina Teslica 50:11

Yes we do

Rachel Pears 50:14

Thank you so much for having me

Rina Teslica 50:15

Amazing but before we go as we always end the podcast with a fucking normal so Rachel piers WHAT IS YOUR FUCKING normal?

Rachel Pears 50:26

So my fucking normal so I think I alluded to this at the beginning of our conversation but I mentioned that Amelia is currently loving being a pop star at the moment. And and so my f**king normal is most mornings on the way to school when we kind of park the car and walk to school. I have to pretend to be a security guard and have to make sure I'm rolling out the red carpet and throwing rose petals for her and managing the paparazzi and managing your overzealous fans who are looking for an autograph. So that is currently my fking normal.

Lauren Fenton 51:06

That's brilliant. I look forward to her first her debut album.

Rachel Pears 51:12

We all do. It's in production.

Lauren Fenton 51:15

Gorgeous. Thank you so much.

Rachel Pears 51:19

Thank you.

Rina Teslica 51:20

Thank you.

Lauren Fenton 51:20

Thank you so much for listening to the fucking normal podcast. We love making this podcast. Yes, we do. We are part of a much bigger team almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences.

Rina Teslica 51:41

So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at fucking normal podcast.com That's f k ing normal podcast.com you can join us on Facebook and on Instagram at fucking normal underscore podcast. That's f k ing normal underscore podcast. You can get all the links and more information in the show notes below.

Lauren Fenton 52:04

So thanks so much for listening all the way to the end. We'll see you next time.

Music to play out...

Transcribed by https://otter.ai

Episode 16: Wellbeing with Nicole stephens

~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Lauren Fenton 0:01

Okay Rina, you seem stressed what's going on?

Rina Teslica 0:05

Do you ever feel that parenting disabled child is chaos like absolute paperwork chaos? There's just so much admin. On top of caring for your kids. It's like, I'm my frickin daughter's PA.

Lauren Fenton 0:20

Ah, yes, you should try the new Hibi app.

Rina Teslica 0:25

An app?

Lauren Fenton 0:26

Not just any app, it's disabled parenting mega organisation, so you can schedule appointments, have reminders for your medication. Have all of their medical notes and letters in just one place?

Rina Teslica 0:40

Hang on. spell this out to me again?

Lauren Fenton 0:42

Hibi, H I B I. It's a Disabled Parenting organisation app. I wish I'd had it when Bea was younger. It gives me a sense of control over well, the uncontrollable

Rina Teslica 0:55

Sounds intriguing. Who doesn't want to organise Disabled Parenting chaos? One notification at a time?

Lauren Fenton 1:01

Haha. Yes. It's my new sidekick... side kicking the shit out of disabled parenting organisation.

Rina Teslica 1:08

That's the least catchy strapline I've ever heard Lauren. Yeah.

Lauren Fenton 1:12

Okay, fair enough. They won't want it. But if you, like Rina, and I, want to give it a go, you can download hibi for free on the app store now.

Lauren Fenton 1:28

In this episode of fucking normal we talked with Nicole Stevens all about wellbeing.

Rina Teslica 1:33

Oh, that was such an lovely episode. I really enjoyed talking to her.

Lauren Fenton 1:37

Yeah, she was gorgeous, and had such great ideas and insights and tips on how to look after yourself as a SEN parent. Um, definitely learnt something.

Rina Teslica 1:49

100% I think I also learned what I have been doing wrong.

Lauren Fenton 1:53

What have you been doing wrong? nutritionist by qualification? Really? What have you been doing wrong?

Rina Teslica 1:59

Eating my feelings....

Rina Teslica 2:03

No, I think I've realised that I when I have a bad day, I like a slice of cake. If I leave the house, I need a treat. Because I've made it through the day. But then it becomes a routine is when it becomes a problem.

Lauren Fenton 2:17

Oh my god, you're making me hungry. I like really want to go and get a babybell out the fridge now.

Rina Teslica 2:25

I've got some babybel too actually

Lauren Fenton 2:27

It's a treat for me... like what can I find in the fridge that's just like a treat... because I deserve it. Yeah, I definitely have that too.

Rina Teslica 2:34

Oh, no, that's terrible. But I am slowly getting better not to say you don't have cake every other day. But still

Lauren Fenton 2:41

let them eat cake. That's a really naff joke. The thing I am getting better at is leaving my phone like away from me. At first you get that panic. But then actually, I find in the evenings if I just leave it charging somewhere else. It's quite nice. It's quite freeing, and clearly good for you. So that's something I'm trying to do that's in my self care bucket if I can put it like that.

Rina Teslica 3:09

Oh, that's such a good idea. I don't think I have the willpower to not have my phone next to me. But that's a good idea. We see we need to take home what Nicole has been telling us.

Lauren Fenton 3:21

It's not me first. It's me too. Yes.

Rina Teslica 3:25

So so lovely. I love that. And I have to remember to think like that, because I think lots of people think that self care is so selfish. When actually, it really isn't especially when you have a second kid like how are you expected to look after your child with all these additional needs? If you aren't looking after yourself?

Lauren Fenton 3:43

Yeah, I really hope everybody enjoys the episode.

Lauren Fenton 4:03

This is the fucking normal podcast, the cheers, tears and Friday night beers of parenting disabled children.

Rina Teslica 4:11

I'm Rina,

Lauren Fenton 4:12

and I'm Lauren.

Rina Teslica 4:13

And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories and chat about the things that we've learned and are still learning.

Lauren Fenton 4:27

Prepare to sometimes laugh, sometimes cry, but hopefully leave with a shot of optimism in your arm. And don't forget we are talking from a parent's perspective. We would never presume to talk on behalf of a disabled child or adult. So expect bad language and quite frankly some brutal honesty. Because

Rina Teslica 4:47

really what the fuck is normal anyway?

Lauren Fenton 5:02

Welcome back to the fucking normal Podcast. I'm Lauren.

Rina Teslica 5:06

And I'm Rina.

Lauren Fenton 5:07

Our guest today is Nicole Stevens. Nicole is mum to 11 year old Amber and six year old Skye. She lives in West London with the girls and her husband Tyrone. Amber has a genetic condition called DDX3X syndrome. Gosh just rolls off the tongue. The syndrome mainly affects girls who typically present with learning disabilities, low muscle tone, and feeding and speech and language difficulties. Some also have ADHD or are autistic. It was first identified in 2015 and Amber was diagnosed not long after in 2017. These days the biggest impact for Amber of DDX3X is on her speech and communication. And she has severe learning difficulties. Nicole works in health and nutrition and has worked in the NHS for over 21 years. Welcome, Nicole. It's so lovely to talk to you. Just to kick it off. Can you tell us a bit more about Amber, tell us a bit more about your family as a whole.

Nicole Stephens 6:09

Yeah, sure. Hi. Nice to be here really excited but also equally nervous?

Rina Teslica 6:16

No need.

Nicole Stephens 6:19

So I like you said I'm Nicole. I am mum to Amber. Amber is 11. And she has got that Yeah, super catchy genetic condition called DDX3X syndrome. Which means that she has got severe learning disabilities, mostly affecting her speech and language communication now, but this is over, you know, this is where we are today at 11. But you know, it had significant impact on her development when she was younger. And I became super familiar with terms like Global Developmental Delay, which I had no knowledge of prior to having Amber. And yet genuinely disabilities aside, the kid is amazing. Like, honestly, I am biased. But I literally be because everybody agrees with me. All the time, that she is just like Joy personified. I pick her up from school, she's at secondary school now. And I pick her up every day. It's almost like she hasn't seen me in the morning. She runs out to give me a big massive hug like we have not seen each other for years.

Lauren Fenton 7:32

Oh my gosh. that's gorgeous.

Nicole Stephens 7:37

She is full of love full of joy, and a really, really happy, a really, really happy being. She's just a happy kid. so Skye is six, sky is equally gorgeous and wonderful. She has no disabilities and is typically developing. So I suppose my parenting experience with both of them has been really quite different. And then also the addedness of parenting to children sort of increased the chaos and madness at home. But yeah, she's She is amazing. She's in year two. She's gorgeous. I remember, I remember being pregnant with Skye. And we found out the gender of our kids. Husband was desperate for a boy. I don't know. It's not like we're not in in the 1930 anymore. But he really he really wanted a boy. So missed first time round, obviously, because we got Amber Missed second time round because I was pregnant with Skye. And he didn't he wasn't with me when we had that that sort of gender scan when whenever it was and I think I found out earlier as well with Skye, because there was had been these issues with Amber and I was super anxious. Do we have a boy or a girl? And I was like, we have a girl and he was kind of like audibly like disappointed

Lauren Fenton 8:58

Oh, no, that's awful.

Nicole Stephens 9:01

Oh, oh, oh, okay. Oh, and then kind of I could hear almost like his internal monologue going and then he sort of went "Do you know what? We needed to have another girl for Amber? Because she is going to she is going to be the person that will look at not look after Amber in that sense, but in a way that sisters do." That kind of reflection from Tyrone at the time did kind of make me realise as well that gosh, yeah, you know, spies going to kind of look up look out for Amber in a way that sisters do generally. Anyway. It was just a nice sort of package that, you know, he sort of reminded us that it was it you know, girl, because I said I'm ready. I'm doing too and I'd like to find somebody else, i'm not doing it again.

Rina Teslica 9:49

Oh my god, that's so sweet. Um, what about you? Give us the deets. What? What was your career pre babies post babies.

Nicole Stephens 9:58

So I am 42, nearly 43. West London born and bred. I love old school r&b And Garriage. Like I am a proper I was an old school raver. Still in my mind, I still feel like that is me. No, that is not you. So, you know, I can probably manage a day party or a brunch, maybe once or twice a year. Which I still love which I still love. And my parents from the Caribbean. They are currently there now. I will be

Rina Teslica 10:37

Lucky. lucky them.

Nicole Stephens 10:38

I was speaking with my mom last night - I was like "it's minus four". There'll be there for the next four or five months. That is like half my support network gone. I am married to Tyrone. We've been together for 22 years, I think. I studied nutrition and health at university. So when I listened to a previous podcast, and I was like, oh, like we've got this shared thing, you did you did nutrition, right?

Rina Teslica 11:11

I did Human Nutrition at uni before it was a thing before I even knew what it was.

Nicole Stephens 11:16

Yeah. Same. Well, I did. I did nutrition and health many moons ago. And I think, you know, growing up when I was younger, I was always really, really interested in food. And I was I then became really interested in food from a healing and wellness perspective. I like eating it by also just, you know, it's such it's so powerful. Anyway, so I did Nutrition and Health at University many, many moons ago, and then went into working in NHS and I've been there. It's 21 years, and I think it's almost probably pretty much to the day.

Rina Teslica 11:16

Oh, wow, happy anniversary work aversary.

Nicole Stephens 11:57

And I've always worked within the field of public health nutrition or health improvement or health promotion in the NHS, and I currently kind of oversee one of the Children's Services in West London.

Lauren Fenton 12:13

With that kind of health Well, being NHS, I guess background, one might think that you were well positioned to not that anyone can be really positioned for, you know, the the less typical parent journey when you're not expecting it, but how did you pay when kind of Amber got her diagnosis?

Nicole Stephens 12:34

I got pregnant with Amber a couple of years after being married. And we were super excited. We had those first scans, it's at 12 weeks, right? And the hospital that I was at, somehow managed to mix up my bloods or something went a little bit wrong. So I had to, they had to, I had to go back and have them done again. And those bloods came back, indicating that there was a high risk of having a baby with Down Syndrome. So we decided we were going to have the procedure. Amniocentesis. It came back that we weren't. We came back clear. So progressed with the pregnancy. As usual. When I look back now they had I did have extra scans. But the pregnancy was normal. I think Rina you mentioned like having a gut feeling.

I remember being before the 12 week scan, I remember waking up one night, almost inconsolable, I was chest my chest was struck with this panic that something wasn't right, that something that there was something wrong and remember, Tyrone saying, you know, what's the matter why, you know, it was like early hours in the morning and I was crying and he said, you know, what's the matter? And I was like, I just feel like there's something wrong there's something wrong and he was like nothing's you know, there's nothing wrong that you... you know, do you feel like you're feeling okay, and I was like, I feel fine, but I just feel like there's something wrong and he was like, you know, like, let's not call that sort of thing in like, you know if there's nothing wrong, just go back to sleep and I couldn't I got up and I sat in the living room. But that feeling it was it was as quickly as it came on. It disappeared and for the rest of my pregnancy, it was easy breezy. I loved being pregnant.

Amber was massively overdue. She was a super colicky baby like she and you know she wouldn't settle she didn't settle very easily so I am super versed in sleep deprivation. They will be some time I remember I think I've probably been up 24/48 hours with her on occasion what became apparent later on down the line is that she was it was more than like she was slightly aspirating throughout that time and we just didn't we just didn't know. So Lauren, you you asked whether or not I suppose my background in in the NHS and health kind of equipped me for it didn't. And when I look back on that time, as a new mum, although I had no measure, none of my friends at the time had babies, I was the first one in my group. And I obviously I didn't have any of the children. I didn't really, I didn't really know, what was normal or what wasn't normal. And, you know, I was going to some of these groups, and yeah, she probably wasn't doing all the things that the other babies were doing at that time. And so it wasn't until she told me about three, four months that we started to see that there were some sort of, there were delays, there were milestones that were being missed, right. And then that was that just then became a flurry of appointments, investigations. And at the time, I remember again, being really, really anxious and just Googling the shit out of any and everything, you know, I will put into google, my baby doesn't sit up, my baby doesn't roll over. You know, what does this mean? And, you know, things will come up and I had a list of query query, you know, medical conditions that I thought that maybe Amber would have and I remember speaking to my health visitor, and she said, You know what, we're going to refer you to the hospital to have the paediatrician kind of look at Amber and I went in with my list. And he took one look at me and was just like, this is an neurotic mum and neurotic first time mum, and he went, he used these words, her development adequate. And I thought, oh, okay, adequate. Sounds good to me. Okay.

And it was really funny because that same week, my health visited also made a referral to the community, paediatrics department, and I got a phone call, I think my appointment at the hospital a bit on the Monday and a phone call on the Wednesday from the community service. And they said, or do you want to come in? You know, we've had a referral, we've got an appointment on Friday. Can you come in this Friday? And I said, Oh, no, I've seen the hospital doctor and he said that you know, and that's fine. And she went, you know what, just come in anyway, there's no harm in us also taking a look. Okay, for sure. So off I popped in, and by this time, I'm was about six months old, and she asked me those questions she observed and there was also a physiotherapist in the assessment as well. They did an assessment which took about an hour, an hour and a half. And at the end of that, the paediatrician said, you know, Amber's development is probably half a chronological age, she she's got developmental stage of a three month old and at this point, she was six months, right, we are going to run a whole host of tests. And immediately I went into, Oh, my goodness, like panic mode. She had brain scan, she had blood tests. And we were at Great Ormond Street Hospital, and I thought she was going to die. That's what I thought that whatever they were going to find meant that my amble wasn't going to be with me forever. And I think that that stayed with me for a long, long time.

Lauren Fenton 18:15

Did you voice that to anyone? No.

Nicole Stephens 18:19

No, I didn't. I also carried with me that I've done something wrong. Which is like inter... I'd internalised that there must have been something I'd done during my pregnancy. Maybe I didn't take my vitamins in time. Maybe it was that like small glass of wine that I had before I knew I was pregnant, maybe it was the blue cheese, I ate on some cheese. It was all of these things that I just was like, I've done something that's fucked up. Basically,

Lauren Fenton 18:46

I think every I mean, it's Rina and I are nodding furiously here, because I can't speak for everybody. But I've certainly heard from an awful lot of parent carers that and especially mothers, that they go through that. I remember having a dinner with my husband, like, in the early days, like, on a rare occasion that we'd got out where we actually, I sort of confessed to him. It was my fault. I've done something and then he said he thought it was his fault. And then we had like, this little blobbing moment in a in a restaurant where we confessed this to each other.

Rina Teslica 19:20

Did you because it's like hearing myself talk. So thank you. For me, I felt exactly the same but I also because I also thought she was gonna die like any given time plus, because she wasn't breathing and she was on machines bla bla bla bla added to that pressure but also that self preservation for me kicked in where I just wouldn't allow myself to get too attached to her because I didn't actually know how long she was going to be around for. So then I didn't actually realise that I was doing it until much later, where like, she came home. I think it was like, two three years after I'd given birth to her that I felt attached to my child because for that long, I was like, if she dies, and I've fallen madly in love with you, and I will be absolutely heartbroken. So I would rather keep you at arm's length. I mean, you're my daughter, and you're my kid, of course, I love you. But it's, I didn't want to create that form of attachment, because I just didn't know did you do that? Or were you like, just head over heels or

Nicole Stephens 20:30

I think that listening to you II? You know, it's an experience. Like, I've heard it loads and loads that I was completely opposite. I was, I was like, why I'm going to she is going to be my everything from now on, just in case. And she, she was also very clingy baby. I would, I wore, you know, I carried her a lot. I went completely the opposite. I was just like, right? I you know, she, our nobody had ever said that she was gonna die. I just

Rina Teslica 21:05

No, no, no, no, no one said she was gonna die to me either but

Nicole Stephens 21:08

I just made. It was this thing in my head? And I was like, right, you know? And she just in case, I'm going to, you know, she, I'm just going to make the most of how, yeah. So I was completely the opposite. And I think that that was also a little bit of an added pressure added pressure on myself to be this amazing mum, this super caring mum, I didn't really let anybody else look after her really, you know, like, I just really took that responsibility on I took her to all the appointments, partly because, you know, also my husband's job didn't really allow for just, you know, they are my job is more flexible. And I say flexible. I use that term loosely. I'm relieved, you know, to take it to these appointments.

Rina Teslica 21:59

Also you're expected to because you're the woman and you're the mum, so

Nicole Stephens 22:04

100% that it was all of these appointments. And yeah, it was it was it was a hard few years. And I can't remember if I said this already, but I just feel like I survived. I was I was in survival mode. Yeah. I mean, there was moments of absolutely, joy and pleasure, I loved being a mum. And it was amazing. But I was also very much just surviving and getting through all these appointments and looking after her and then, you know, you're not just mum, but then you know, physio give you all of these exercises that you've got to apply. And I was doing those at home as well. I was making sure that nursery were doing them when she started nursery I was doing speech, you know, all these interventions, I was trying to get results to get you know, it was just extra there's all these extra things that I was doing to help support her development or her progress or Yeah, it was tough going in.

Lauren Fenton 23:01

Did it change when she got did that way of coping change at all, after she got her diagnosis or

Nicole Stephens 23:08

so we spent a long time umming and arring about whether or not we would have another child based on the fact that up until you know, 2017, we didn't have a diagnosis for Amber. The paediatrician said right, we can actually enter you into this into one of two really large studies that may or may not bring a diagnosis for Amber. And we discussed it. And again, Tyrone was kind of like, we should do it. But, you know, ultimately, it doesn't change Amber. A diagnosis doesn't change who she is, it doesn't change anything. And also, all the health professionals had said that it's unlikely that this is a hereditary condition that would be passed on to any other children. And by then, we decided that we weren't going to try for another baby. I had Skye in 2017. We got a letter A few months after Skye was born to say that we think we may have found the cause of Amber's delays, do you want to you know, there's an appointment for you. And that appointment was something like three months away? Saying to my friend, you know, we've got this letter, they think they found out the cause of Amber's Global Developmental Delay, and she was, oh my god, like, when's when's your appointment? We were pregnant at the same time. That's how I met her. She's like, when's your appointment? I told her, it was, like, February of 2018. It was like, she was like, February. Oh, my God, like, how are you going to wait that long? And I was like, to be honest, like, it makes no difference. We've been waiting all of these years anyway, like waiting a few more months. It's neither here nor there to me.

We got the diagnosis. I remember sitting in that geneticists room, and I burst into tears and she said, What's the matter? You know, what's the matter? Why are you crying? And I said, I just thought this was my fault. And that's the first time I'd said those words. I just thought it was me and he was like, you didn't say anything. Anyway, so in that consultation, the paediatrician gave us a, you know, there was very little known about the condition, there is still relatively little information about the condition. She gave us this leaflet that an organisation called Rare, Rare had produced, which had findings or sort of insights from this small collection of parents whose girls had been diagnosed with this condition. And I read through that, and I was like, Oh, my days, this is, Amber. This is literally all of these girls are Amber. The girls are all generally happy and joyful by nature. Sleep, they will never able to self settle. That was something we had battled with for years.

And I hope my mum won't mind me saying this. She's you know, she raised us in the early 80s. And cry it out was the way that you taught your children to self settle. And so that's what she knew when she was like, you've just got to leave. It's a crime. She'll set herself because she doesn't fit. And it was heartbreaking. And it was hard. And I remember one occasion, we moved back into this barn before we moved to where we live. Now we live with my mum and dad for a little bit. And my mom looked after her. Tyrone and I had gone to a wedding. And they came back and said, Oh, how was Amber? Did she sleep ok? I think oh now that's it..., I think I'd asked my sister to come over to help look after Amber. And they said, Oh, yes, she took a little while to settle down. And I said, Well, what do you mean? And they said, Well, we left her in the cot, she was crying for about 45 minutes or an hour. We don't do that, because that's not what we do. my mum was like, well, she's not going to learn to sleep if you know if you don't do it. And so sort of reading that really sort of helped to validate some of my experiences that I'd had with Amber, that I just suppose didn't realise had been part and parcel of her condition had been part of part and parcel of making some of the parenting more challenging. And I had probably just thought it was me not doing it right.

Rina Teslica 27:14

How was your like? Because obviously being a first time mum, like there's all that, like sleep deprivation and all of that, how did then you've got the added pressure of like, now having a child with a disability? How were you feeling in that? In that time? Because it's one side, like, being a new mum has all of its hormonal things going on, but then adding this to the pat? What was going through your head? How were you surviving? Did you have help? I also I struggled personally with like, accepting the disability and then having my wider circle, who are quite traditional and have a backwards way of looking at disability, which then impacted how I saw it. So that added to the mix. What was it like for you?

Nicole Stephens 28:11

So I had I had very little knowledge or understanding or experience of parenting. Like I said, I was the first one out of my friends. To have a kid, let alone a kid with a disability. I didn't know anybody with a disability. I didn't. I never none of the groups I went to there weren't any kids like Amber there. I suppose my family just we all just, you know, Amber's just Amber. She was accepted. She kind of, you know, I have had comments, not off my immediate family, but I have had comments like, oh, you know, she'll grow out, you know, she'll grow out of it, that sort of thing. I have been told not again, by my family, but like, people in my extended network, you know, I'm on a Caribbean background and culturally, you know, and, you know, there's a strong emphasis on sometimes like, church and prayer, and, you know, maybe you didn't pray enough and I was like, No, that's not how this works. At least I don't think it is. So, you know, that was it was that was really challenging, but I'm really grateful that that that didn't come from my family. So you know, my family just were really supportive and helped as much as they could in in the way that they thought they could. Yeah, but I just you know, painted on this facade of everything's fine. It's fine. Yeah, yes. Amber has these disabilities will be delayed or they will just delayed you know, it's global developmental delays at the time, but oh, you know, it's easy breasy. I'm amazing. I'm breezing through this.

Rina Teslica 30:03

But really what was your well being like, in that moment, exhausted,

Nicole Stephens 30:06

I was overwhelmed, I was surviving on the full fat Coca Cola, and coffee. I I was always back at work, I was tired, I was really, really tired. And there will be some times where, you know, I would have two or three appointments in the same week. And now understand that I was having to relieve that traumatic experience of having to retell my story over and over again. And there will be some times I would come home and that, you know, at this point, you know, I, sometimes I'd come home and I'd sit on the sofa, and I would just be like, nobody, nobody fucking talk to me for 20 minutes, you know, are you okay, what can we do? And I'd be like, I just don't want to talk. And, you know, it was that that was the only way that I could, I suppose process, some of the stuff that I'd had to have gone through in those, you know, in a short period of time, if I'd had back to back appointments. And then just sort of, I would just sort of bounce back and just go back to being like, everything's fine. I've spoken to friends now who have got children with disabilities, and they have spoken about, almost like a grieving a grieving process of grieving the child that they thought that they would have. And I must admit that that is not something that I feel like, happened with me. And I wonder whether it's because I just went into this, you know, maybe it might come later, but I just threw myself into, everything's fine. And we'll just keep going. And

Lauren Fenton 31:52

how would you define your well being at the time, then?

Nicole Stephens 31:56

I didn't think about it to be honest. And at the time, when I looked back on it, again, I was very much in survival mode. And I was the coping strategies I had, were probably probably, they were having a detrimental impact on my physical health. Which I can come on to a little bit later, but I just I didn't even think about my well being at that time. It wasn't a priority. It wasn't something that I acknowledged was it was a priority wasn't a priority. wasn't a priority. Yeah, it was just trying to get through all of these appointments. Get to work, keep the kid alive. And let everybody you know, present the image of, of being fine and coping and coping.

Rina Teslica 32:54

Was there like a turning point?

Nicole Stephens 32:57

Yeah, there's been a few times because I default back into perfectionism, like it is it's a curse, right? And I call myself a recovering perfectionist because of that.

Nicole Stephens 33:13

And I need constant reminders. And those reminders are sometimes quite brutal. I genuinely can go for quite a long time, just with my head in the sand and just carrying on like normal and to be honest with you, I did that with Amber for years. And I was almost wearing that. I was exhausted. And I was probably wearing that exhaustion is about a badge of honour. Look at me, I'm so tired.

Lauren Fenton 33:50

Why do we do that?

Nicole Stephens 33:52

All of these things. look at me, aren't i great? Nothing to see here. Yeah, I am coping with me why you know, disabled child, which is fine, you don't need to pity us look, do i look like I'm struggling. It was that it was just this image that I was portraying that everything was okay. And everything was fine. And like I said, there's been a couple of of times more recently over the last few years that have had real moments where I've sort of been really forced to look at my wellbeing and take stock of that bad habit of trying to be perfect all of the time. The first one that I can really talk to is after I had Skye so like I said it was quite a you know, Amber was for nearly five when I had Skye so I'd been doing this for five years as a mum. Had Skye and wasn't getting that much sleep. So again, just went into sort of that default lots of caffeine that actually it was If it wasn't even caffeine anymore, I'd upgraded to lots of wine.

Rina Teslica 35:05

I love that!

Nicole Stephens 35:07

At this time times, also working on it on a on a Saturday. DJ-ing, so he would come home like really, really late. And I would think of that time was me time. I thought this was me time I thought this was me, looking after myself and doing self care, I would sit in this spot on the sofa, the table that I've got my laptop, on now was my little wine and snacks table. And once the kids have gone down, I was like, right, I'm gonna have two or three glasses of wine, I was drinking very little water, I was getting very little sleep. And I was doing nothing in terms of physical activity. And I did that was self care for about a year or two after Skye for about a year after Skye was born. And then I started to get episodes where I just felt very unwell. And like I felt tied to my bones in a way that I had never felt tired before. And I was I kept getting ill like chest infections, colds. And I remember going to the doctor and saying, I just don't feel that well. And she was like, Oh, that, you know, let's run some bloods came back pre diabetic. And that was like a wake up call for me that actually, I'm not looking after myself. And if I do not look after myself, then this is now going to be I'm on a downward trajectory.

Rina Teslica 36:35

Yeah.

Lauren Fenton 36:37

Did anybody around you at the time kind of signalled to you that they felt that you weren't looking after yourself? Or that you needed more rest or anything? Or was that were you kind of just oblivious to that.

Nicole Stephens 36:48

My mum does all of the time she was doing it at the time, she still does it now. And I just ignore her.

Lauren Fenton 36:54

It is really hard to hear from other people. And I think what we do sometimes hear from other people, though, is the stuff that reinforces it. So, you know, earlier you were talking about you know, as women, as parents, as mothers, we often just go into that, like, I'm going to be amazing at this and the best at this. And just so I can handle everything more, more more. And I do think I find that sometimes you get this kind of negative reinforcement that is people saying like "oh I don't know how you do it. You're doing another thing? Ahhh you're managing all of these things, and it's like this, you sort of command this respect for being, like tired to the bone, as you put it by managing all these things. And it's, it's, it's really, it's really destructive? Why do we do that to each other and to kind of give that respect, and not that we shouldn't respect each other, but kind of Yeah, validating that that's the way that you should be doing. And when actually, as you've described, you need to look after yourself.

Nicole Stephens 37:51

That was like the first real kind of wake up call that I needed to, to be better at looking after myself.

Rina Teslica 38:01

So what did you change? Like? So what were the steps that you took to then change your lifestyle change the way that you were doing things, making time for yourself?

Lauren Fenton 38:12

Help!

Nicole Stephens 38:16

I'm still not winning it. So my advice is, is only coming from a place of these are the things I've tried. And these are the things that work worked for me i at the time, I was like, right, I'm going to I started doing my local park run on a Saturday morning. So I would leave the kids with Tyrone, I would go into my 5k and think I was going to die at any moment in time around the 5k course. And I did that for a long time. I just started making sure I was drinking more water. Just really basic things that I knew that I should have been doing my professional background.

Rina Teslica 39:00

That was what I was gonna say did you go did you revert to your professional hat and be like, if this was a client? This is what I would tell her to do.

Nicole Stephens 39:07

Yeah, exactly. And also just from a, like a behaviour change perspective, I you know, I was really realistic in what I could manage around my family and my situation. So that's not me signing up to a gym that I probably will never ever go to just because I have to do it when somebody else can look after the kids. I can't just call a babysitter and say oo could you pop over in the car to the kids for a few hours while I go to the gym. It really has to be something that works within us and like I think I said earlier you know, I was really up until again fairly recently. You know, I wouldn't let other people look after Amber really. My mum and my dad and my siblings, my brother, my sister, that's it you know outside of our immediate home so it just made things like that. It just made well being practices that It involves me being outside of the home or outside of the home for extended periods of time, more challenging.

Rina Teslica 40:07

So what does your wellbeing bucket look like now? What are the things that you do to get you to a place where you're feeling good, and you're able to be there for Skye and Amber and Tyrone and just live your life to the best of your ability?

Nicole Stephens 40:24

I one of the.... you asked me earlier, you know, if there was anybody who had kind of been saying, you know, slow down, you know, take a minute, you know, what's going on? My mum has always done that. But in 2020 pandemic year, again, I got into almost breaking point. And Amazon man came to my house and Tyrone was have you ordered something again, I thought, did I order something again, I know I order lots of stuff. And I can’t remembver. have i ordered something. And my gorgeous best friend had sent me a copy of this book called "Tender", the imperfect art of caring, it's by a lady called Penny Wincer.

And I read this book, and it really sort of changed my whole understanding of parenting a child with a disability and being a carer, there's a chapter in there on self care. And again, that was really transformational for me reading through that chapter. And I draw on a lot of the, the insights from she, you know, she talks to a lot of people who were, who were carers, whether it be parent carers, or caring for elderly parents are caring for partners. And one of the people that she spoke to in the book is a lady called Susie Reading, and now follow her on Instagram, and I bought probably all of her books. And her favourite, my favourite one, this little book of self care. And the reason why I love this one is because I don't have the energy, the time this the brain space to have these elaborate self care practices. And this book has got things in there that I draw all the time, and that I can fit realistically into my day.

So when you asked me like, the things that are in my bucket, erm I build in things, you know, I think in the book, she refers to them as, as micro moments, I refer to them as like micro moments of joy and calm. And they are things that I can squeeze into my day in the matter of maybe five or 10 minutes, that just allow me to sit, maybe I sometimes I do this in my garden, I go and sit in the garden with a cup of tea or leave my phone and laptop, wherever I pause from work, I sit in the garden and I do nothing. I think that the inner thoughts pop into my head, I just let them go by I'm not going to think oh god, like that thing that I needed to do, I'm just not going to do it. And I try and do that for 10 10/15 minutes. It just gives me that, that time and space away to kind of be stilland breath. And what I when I started to do that, what it also enabled me to do in that stillness is really listen to my body and think actually, do you not I am tired. And I'm going to instead of responding to that by drinking more coffee, I'm going to respond to that by having tried to have some more rest or get some early nights in. And, you know, there's loads of things that I've, I've now sort of learnt and understand more from a wellbeing perspective. outs even outside of my you know, background in nutrition and health, just really practical things like the importance of sleep. And sometimes my sleep is broken Amber gets up in the night, probably four times a week. So my sleep is always going to be broken, I can't control that. But what I can do is make sure that when I can, I'll try and catch up so sleep I didn't, I didn't know this right, rest has an accumulative effect. So the benefits of sleep and rest build up over time. So even if you can't even if you're not getting whatever it is that you know that eight hours of sleep per night, if you can get rest where you can that's, that's readdressing that that sleep deprivation, it's topping that it's redressing that imbalance. And sometimes that just looks like me resting on the sofa. And I do yoga nidra

Lauren Fenton 44:27

I love yoga nidra oh my god, it's amazing. Do you want to explain what it is?

Rina Teslica 44:33

Yes, I've never heard

Nicole Stephens 44:34

In the pandemic when everything moved on to do one of our local organisations, contacted family in the borough that I live in set up these yoga nidra sessions, virtual sessions and I was like, aww i do like a bit of yoga I'm gonna do this was on a Wednesday night. I've got my yoga mat out and then logged on to the Zoom. And the wonderful teacher took us through what I can only describe as a have a deep relaxation practice. So there was no, I was like ready to do stretches and positions and poses. No, she said, lie down and get yourself comfortable. And she used to say, this is the practice yoga nidra is the practice of doing nothing. And she would take you through this beautiful guided meditation where she almost kind of encourages you to do this sort of body scan and relax every single part of your body. I must admit, though, Lauren, when you know, I did the zoom call, it takes me off to sleep. So I probably only heard about 5,10 minutes.

Lauren Fenton 45:40

I have to set an alarm. Yeah, I just fall asleep. So I do on YouTube, I basically just if I tired in the day, and you know, when you just feel that like total exhaustion. And if I've got a moment, I think, well, I can't go and have a nap. Because I just don't, I don't nap in the daytime, it's just not going to work. And you know, I've got time for a whole nap. But if I can find 10/15 minutes, and I'll go and I'll lie down, put a YouTube thing on of yoga nidra and set an alarm because I will fall asleep because it just puts you into such a deep relaxation. But then when that alarm goes off, and I kind of rise out of it. It's so different for me and I'm sure you know, everyone's experiences are different. So it won't be the same for everybody. But I feel rejuvenated and refreshed after doing that rather than that kind of like sluggish. Oh, do I really have to. I fell asleep and now i need to get up.

So yeah, I really like it as a little hack of something you can drive for like 10/15 minutes to really just rejuvenate you and your day. But I was I was also going to ask how did you feel physically then with this change from kind of being on the precipice of a diabetes diagnosis to making these small changes in your life? How do you feel physically now?

Nicole Stephens 46:54

Like, I've got new life like that sounds really dramatic. But at the time like you know, I said I was feeling like bone tired like I was feeling bone I was having like joint aches and I just thought is this is this what it's going to be like for the you know for the rest of my life now like that's, that's gone like I don't have I don't wake up bone tired. I don't wake up with aches and pains. I have more energy like I'm more energised. Sometimes I am tired. We're all tired very often. And that's probably never gonna go away. But I I feel more energised. But not just physically I suppose. But mentally and emotionally. Like I feel like I'm much more able to parent better. I'm a nicer Mum, I'm a nicer wife. Yeah. It just makes me a nicer person when I can, when I have prioritised myself, and my wellbeing and my self care. And I've taken time out to do that for myself. It just brings me back to being a nicer person.

I wrote something down from the book. And it said that taking care of yourself doesn't mean me first. It just means me too. And I was like, it's that it's not, I'm not, you know, I'm not saying, oh, you know, my well being and I, you know, my timeout is it's me and me only, it's just me too, like everybody deserves to have a little bit of timeout for themselves. And that that can be really, really difficult when you're parenting a child with disabilities. But what helps that is being open to and accepting of any help and support that you can access. And that might be within your, you know, your immediate support networks calling on those. So for me, that's my parents massively. So when they're not here for four or five months of the year, that's really, really hard. But I recently, you know, I just messaged my brother the other day, and I said, look, there are some dates that I would really, really like, for you to be able to have the girl so me and Taryn can kind of go and do some stuff together. Would you be able to do these dates? Text back straightaway? Yeah, no problem. It was just that and Oh, Nicole, perhaps would have just been like, oh, well, I just won't do it. And I would just push through. And been really struggling and probably resenting the fact that nobody's nobody's asked me, nobody's asked me if I need any help.

Lauren Fenton 49:22

But they don't know. Because it's really hard, isn't it to ask for help. I especially if your coping mechanism is to just do it all and but you but for me, it's also about control, I find it quite hard to relinquish control. So feels like you're, you're not perfect after all. And it's just so important to like, dispel that and ask for help. It's interesting you just spoke about a physical reaction to not looking after your wellness and I suspect there was potentially you know, there was an emotional contribution to that physical not feeling so well as well.

And well, I've always had back problems and I think back problems are quite common and people are now around my age early 40s women in particular, but particularly with kids, and kids with disabilities, I think it's like one of the number one complaints physically of carers and I've always kind of just dealt with it in them when when when my back's gone, and then like got over it, but three months ago, they went again, you know, got a bulging disc, and it wouldn't clear with all the normal things. So I'm actually having a steroid injection on Monday to like a nerve blocker to try and reset get over the pain and it it's just really like, I feel like that's been a little wake up, like your way back. Getting your diabetes scare. I feel like that's been a wake up for me in terms of my physical wellness of this thing has always been niggling in the background, but I haven't fully addressed it. I've always been like, Oh, it's okay now and just cracking on and it's, it's really difficult to flip that and say, Actually, I really need to do something fundamental and change my lifestyle and change the way that I approach lifting Bea and managing kind of my back and my pain in a different way. So yeah, it's, it's really useful to hear this because this is going to spur me on this conversation with you, Nicole is going to actually spur me on.

Rina Teslica 51:20

Yeah, and I think are important. And having read those, you know, that book tendering and just kind of been delving more into, you know, listen to other mums that I'm in contact with, and just Yeah, being more interested in that part of caring being a carer and that the impact that they can have on your, on your health and your well being. And again, I was kind of looking back at some of the stuff that I remember kind of reading through in those in those books a few years back, and in the UK, there's something like 5 million unpaid carers in the UK, like official figures, but actually, unofficially, they think it's more like over 10 million. Right. And the majority of them, as we've discussed, it's going to be us women, out of that, you know, the majority, like 60% have got long term health conditions or, or health conditions that they're, they're battling with themselves. And what we know is that, you know, as as, as parents who are caring for children who have got additional needs, we are going through stress, whether that be really noticeable stress, or just underlying stress that just ticks over every day, it's just there in the background. And we just get used to living with that level of stress has a really, really negative impact. Takes a toll on our bodies. So yeah, you're talking about your back Lauren, like, you know, that middle there is, is letting you know, that, hey, you're doing too much. And want you to slow down. Hey, we need to look at something.

Lauren Fenton 53:01

Yeah. Yeah. It's it. That that physical toil that the I guess pain and kind of physical manifestation in people as well, I think it's really important as well to say it's not, that's not like the fault of the child. in our cases. It's not that the child has done that to you what is done that to you is kind of, I guess what you said again, the majority of these carers are women, it's almost like the default position of the society and people that assume that you will just like devote yourself to raising this child and doing everything you can of course you're doing those things, but you it's not without cost. If you don't also do the "and me bit", you need to look after yourself, too. So yeah, I think it's, I know you have like toyed in with sort of side hustles around well being outside of the NHS, but in your day to day work. Do you come into contact with parents with children with disabilities? And do you see a lot of what we've been talking about?

Nicole Stephens 54:03

Yeah, so in my day to day, you know, many of the children that book access to service that one of the services that, that that my team, run, many of them will have additional needs or disabilities. And many of those parents, you know, sometimes having conversations with them. They struggle with a lot of the things that I've talked about and things that I've struggled with. And being able to have those conversations with parents in a sort of professional capacity, even though they're sort of opportunistic contact, you know, they may not have come they've not come for me giving them advice about their wellbeing they can't because their child needs to access the service that that my team are providing, but it's being able to have those conversations and say, hey, you know, you're here and this is great that you're doing this for your child, but actually, you know, what else are you doing? What are you doing for you, because this is really hard. This is really hard. And it's really important to one acknowledge that, you know, one of the things that is really important and that I've, I've learned over the last few years is this is having self compassion, this is really hard. And like you said, Lauren it's not the child's fault at all. But it but it's hard, and it's okay to feel that it's hard. Acknowledging that and kind of being gentle and kind to yourself, and, and taking away those feelings of guilt and shame around those feelings. And then kind of channelling that into it being okay for you to also take time out for yourself.

Lauren Fenton 55:47

And, and say, Help.

Nicole Stephens 55:50

Asking for help. And being honest about how hard you're finding it can open you up to being able to access support. I asked for help from social services, I referred our family for Children and Family assessment. It meant that a social worker had to come to our house, which in many families is going to be like a big thing. But definitely within the West Indian household. We don't we don't talk about you know, things like that private things we don't people come in and asking personal questions. It's just not the don't the done thing at all. But we had about Child and Family assessment done. And you know, they were able to offer and provide us with respite care for Amber. So she goes to a childcare setting after school a couple of days a week. And during the summer holidays, it means that I have childcare, which you know, she can't access a typical or mainstream childcare setting. So it means that I have access to that childcare. And that childcare then allows or affords me the ability to work or spend time with Skye or spend time doing something for myself, I have been known to put them both into the childcare and just take myself off for the few hours. Just to have some time for myself. And that might again, that might be me just sitting quietly, somewhere with a cup of coffee and drinking that really mindfully, it might be me getting my Pilates mat out and doing some Pilates and moving my body. I also found that that really helps I didn't get on with the 5k By the way, I don't do that anymore. That was

Rina Teslica 57:38

You're my kind of woman, I can't see myself runninf.

Lauren Fenton 57:42

So I'm a runner. And I haven't been I haven't been able to run for three months because of my bag, which is the longest I haven't run for a long, long time. And the mental toll that has taken on me is it's horrible. It's really horrible. So I'm learning to like, enjoy walking until I can run again. But yeah, movement, I think is so key. But I think as well it's easy to put pressure on ourselves, even in the wellness game to go, Oh, I'm gonna do pilates and I'm gonna be all mindful. And I'm gonna do this and I'm gonna do that when actually, you know some of the things that you've mentioned, right, at the start drink bit more water in you, they have 5-10 minutes where you don't have your phone next to you or, you know, it can be really simple things I like I love some of those suggestions that you made and I'm gonna look at that book with the some of those hacks because it's just it is it is just small things where you can that will make you feel that you're better able to parent better able to look after yourself and better able to look at everyone around you. If it's not too big a question, can I just ask about Amber's transition into secondary school? And obviously, that comes with a whole kind of new phase. I have a daughter similar age to, to Amber who's neurotypical. But that secondary school phase is a big, big change. How has that been? And has that stirred up some of the emotions around kind of going into those default mechanisms of cope cope cope. How has it been for you?

Nicole Stephens 59:15

I feel her transition is I feel better equipped this time around. So when she was starting primary school, it was chest like a completely you know, she attended a mainstream nursery. So going into a special school, stared at all of these sort of emotional feelings about her not attended. You know, again, it's these things that you think about when you're you're about to have a child or having a child that they're going to go to this school and dar dar dar. Also meant I didn't know anybody that was going to the special primary school that she was going into. It was complete. It was an unknown, whereas with high school, it's been an easier transition I would say so she's going into a high school with loads of the kids will have primary school So she's already familiar with with, she has a lot of friends that are going up already.

I think in terms of the transition, Amber probably handled it way better than me. Already over the summer, I just knew that there were certain things that as a local authority, were going to be withdrawn from us. And we lost things like transport, which just logistically made things easier to get Amber to to the school, which she went to before, which was further away from our home also meant that my husband could go to get to work on time, I could get to work on time, I could get Skye to school on time, that all went out the window, we just had to like, rethink about how we do that logistically. And old Nicole would have fallen back into like panic mode, okay, you know, got to push, push, push. But instead, you know, I asked, I spoke to work and I said, Look, this is my situation. What, how are you going to, you know, what can we do? And my manager was wonderful and went right. What we need to do to support you is to dur dur dur, can we make it more flexible? Do you need to work from home on the day that you need to pick up Amber? It just, I was just able on the corner, just power through it when it said anything to anybody, I just tried to get on with it. But you know, being able to ask for help. Accept the help and be flexible around that gestures meant that that transition has been easier. So far, I am getting a little bit of I call it preteen attitude from Amber though.

Lauren Fenton 1:01:29

I love a bit of that though. I mean, I don't know that for my own daughter. Yeah, that's hard. It's hard to handle

Nicole Stephens 1:01:37

100%. Like I said before her she has got a lot of Speech Communication. difficulties, I say speech difficulties. Her communication is fine. She likes her. Keys. Yeah, so she let us know, when she has an issue with things. Now a lot of things are nos, they are big nos. So that that kind of next level of parenting and what that will bring in terms of puberty and adolescence, Adolescence is again, it's an unknown, but I just feel like, whatever. Besides really, like, dreamy, this is the dream, whatever life is gonna throw at me now like, I just feel like today, I can sit here and say, I can just feel like I know that I have got things in my toolkit that I can draw on, I'm not going to default on into caffeine and the wine anymore. Even though I do still drink the wine and the caffeine, it's just not in the same copious amounts I was before I can choose, I know that I can cope I know that I can manage and when I when I can't, and when it is really hard. Like I can say, hey, this is really hard, I'm going to need some help. And as a family, we're also getting really good at recognising that in each other. So you know by if I'm feeling really overwhelmed, because you know, there's the dishes are piling up the laundry piling up, I've had to work I've had to cook meals. And then it just feels like the world. Nobody wants to go to sleep at bedtime. So I can sit on the sofa and do nothing. My husband gets in at like 8/8.30 and then some you know, sometimes he's really good at he'll go to go to like Skye. I think Mummy needs a hug.

Lauren Fenton 1:03:22

Oh, sweet.

Nicole Stephens 1:03:24

It's really nice then because last night again, it was it was it was one of these moments. And Skye went to me. I think you need a hug. Do you need a hug mommy? And I was like, Yeah, actually I do. And that, you know, she seen her dad do that. And she now you know, he's just a really nice, a really nice thing and you know, not to go back to like wellbeing and self care, like touching and human touch is one of those things that actually helps to raise our oxytocin levels. And they have really, really positive benefits on our mood and how we feel but actually also have got really, really positive physical benefits as well.

Lauren Fenton 1:04:10

Beautiful. Teaching them all that compassion and it sounds like you're raising two beautiful kids who are going to be as sorted as you in terms of when when one needs a hug and to look after oneself, but you know, they know what to do. Oh, that's a lovely way to end it. So thank you so much Nicole for coming on the fucking normal. It's I feel like I've learned a lot from you. And I've already started reading Penny Wincer's book since you mentioned it when we spoke recently so lovely to chat.

Rina Teslica 1:04:41

A beautiful conversation and you've been so eye opening and has given us some really good advice. So thank you greatly appreciate it. But to finish, would you mind telling us your fucking normal?

Nicole Stephens 1:04:55

So thank you for having me. It's been lovely. I've enjoyed it and My fucking normal is the fact that I drop the balls all the time now. In terms of the juggling, I'm okay with that. And my because I'm being greedy my second fucking normal is taking time out for myself and drawing on my self care practices that is fucking normal for me now whereas before it just it wasn't.

Rina Teslica 1:05:26

I love that. Oh,

Lauren Fenton 1:05:29

yay. Amazing.

Rina Teslica 1:05:31

Oh, it was so lovely to talk to you. Oh my god, I could talk to you like for hours. Thank you.

Lauren Fenton 1:05:39

Thank you so much for listening to the fucking normal podcast. We love making this podcast. Yes, we do. We're part of a much bigger team, almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences.

Rina Teslica 1:06:00

So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at fucking normal podcast.com That's f k ing normal podcast.com you can join us on Facebook and on Instagram at fucking normal underscore podcast. That's fkingnormal_podcast. You can get all the links and more information in the show notes below.

Lauren Fenton 1:06:23

So thanks so much for listening all the way to the end. We'll see you next time.

Music to play out...

Transcribed by https://otter.ai

Series 3 trailer and chat with hibi co-founder Sam milliken-smith

~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Lauren  0:25 

Hello, it's Lauren and Rina here,

Rina  0:28 

We're back!

Lauren  0:31 

We just wanted to let you know that series three is coming together. And will be making its way into your ears imminently. And we have a whole host of really incredible guests and conversations to share with you, including a dad who is trying to grow a SEN dad network, and episode where we'll talk to a therapist, and a chat with another podcaster on working the nine to five while also SEND parenting and in her case also is doing a podcast. Sounds a bit familiar.

Rina  1:00 

But while we have your attention, we both wanted to let you know some very, very exciting news. For the last year, we've been supporting the team behind the new SEN parenting app, Hibi, who have kindly agreed to sponsor this series. We have always been a team of sand mums working on the pod alongside all the other shit that comes to life, you know, work parenting living, and we have never wanted to lose that authenticity and ultimate reason for doing the pod, bringing SEN parents together sharing experiences forming a community, which is exactly why we agreed to partner with Hibi, ultimately Hibi was created to make our SEN lives easier by providing a space that everyone in our children's care has easy access to them, their needs, their appointments, their hospital letters, and more.

Lauren  1:42 

And it doesn't just end there. The app also has so many other aims that are so closely aligned with ours. It made so much sense for us to partner with Hibi.

Rina  1:52 

But what better way to explain to you lovely listeners what hibi is all about them the co founder himself. Hello, Sam.

Sam  1:59 

Hi, everyone. Hi, how are you? I'm doing very, very well. Thank you. Thanks so much for having me.

Rina  2:05 

Amazing. Well, we'll jump right in. Can you tell us a little bit about you and your involvement with the SEN community?

Sam  2:11 

Absolutely. So I'm one of the co founders at Hibi. My background has been in the world of healthcare for several years with the NHS and other organisations but personally I grew up with close friends and family in the SEND community. My mum is an occupational therapist, specialising in epilepsy and learning disability support. And when I moved to London several years ago, I began working for a wonderful charity here called KEEN focusing on supporting children with developmental differences.

Lauren  2:41 

Amazing. Wow. So where did the idea for Hibi first come about?

Sam  2:45 

So what I was seeing through some of those experiences was that although of course every child is different. For a lot of families, there are often some shared needs and parents, siblings, other family members often become their child's care manager, coordinator, and or navigator. And without any prior training tools or resources, they are thrown into that situation. And sometimes that can be quite an overwhelming thing. And what we wanted to do with Hibi was build something that could really support and empower families and let parents get back to being parents rather than overwhelmed administrators or caregivers.

Rina  3:28 

So tell us a little bit about the app and how it works. And how does it make parenting SEND children easier?

Sam  3:35 

Sure. So we aim to provide families with support in two areas through our app. The first of those is really like a selection of care management tools. We know that a lot of families today are using a mix of paper folders, Excel spreadsheets, they might have put together Trello boards, WhatsApp groups, and more. Our app is providing families with access to tailor made tools to allow you and your care team to store track and share the information that is important to your loved one, from medications to symptoms, appointments and more. And then the second thing that we aim to provide families with is really access to trusted guidance. There's some amazing resources out there. But for a lot of families, it can take quite a while to find where they are. We have a whole bank of expert tailored content to the SEND community and the ability for our users to submit questions to the community to be answered by our advisors as well

Lauren  4:34 

Who are those advisors then that answer those kinds of questions?

Sam  4:38 

We're really lucky to have an amazing group of people around us so they range from specialists in children's physiotherapy to parents who have lived experience navigating the system to paediatricians themselves. So yeah, we're very fortunate that we have a great team around us.

Lauren  4:58 

So you've described some of the house The app works and what it gives you access to, but just can you give me some like, like layman terms descriptions of how people would use it.

Sam  5:08 

Yeah of course. So in the early days of designing Hibi, one of the things we would so often hear would be how families were having to constantly retell their story. So one of the things that we see our users using our app for is our digital care passport, which is something you can set up once and share forever, that provides an overview about your child, who they are, their likes, their dislikes, but also an overview of their medical history, their medications, things that might be needed, for somebody who's meeting a child for the first time to know about, and you can then have that in your pocket to share whenever needed as a secure PDF. So that's one use case. Another use case we often heard from families is how often keeping track of all of your appointments or all of the medications that your child is going to have, how overwhelming that can be, particularly when you might be taking your child one day as a mum, and then your partner is the other day or a care assistant is helping in the home that afternoon. So with our platform, you can invite those key caregivers to the same place. So they can collaborate, they can keep track of all these things. And then if you ever need to go back and look at how, how and when medications were administered, and how perhaps that affected sleep or seizures, you have that logged in one place that you can then analyse, export, look back on as well to try and help give people the control and the information and the tools that they need to best care for their child.

Lauren  5:58 

How is Hibi making sure that this doesn't become like another thing for parents?

Sam  6:42 

That's something that we we've been thinking about since day one, because the last thing we want to do is add more stuff to people's already busy life. So the whole premise of Hibi is actually to try and take all of those million and one things that are floating around in somebody's head or on their to do list or wherever it might be stored, and put it into a really accessible, streamlined platform that helps you feel in control of managing all of your child's care.

Rina  7:08 

Amazing. Are there any other perks to the Hibi app? And what kind of what do you see the app doing eventually? what's your what's your ultimate goal?

Sam  7:19 

Yeah, I the vision really is then to try and create something that can be there for families in all sorts of caregiving situations, but the only way we can do that is by by working with the community. So that's, that's our vision. And one other feature of our app is really about providing that trusted content. So if you are going through the EHCP process, we've got a bank of articles written by experts on that, or if you're on the diagnostic pathway for a condition, whether it be ADHD, autism, or otherwise, we've got content on that that's designed to be there for you. To guide you through that.

Lauren  7:57 

You talked about the fact that you've worked in the NHS and and for the charity and your own personal connection into SEND. But can I dig a bit deeper on that? Like, why why do you want to do Hibi, like what is it that you personally get out of, of developing this app and supporting this community.

Sam  8:19 

So for me, the motivation for Hibi was really to shine a light on a really significant part of society that doesn't get the light shone on it very often, I mentioned my mom's work as an occupational therapist earlier. She works in a charity, whose care home is behind the train station. And you wouldn't know it exists unless you knew somebody who was there as a resident or somebody who worked there. But it's full of amazing people. And I want to take some of the innovation that's happening in other parts of the world and some of the attention that's happening in other parts of the world and build something that can really support that group. To give you another example, the charity I work for here in London, KEEN. We have people turning up on a Saturday who've lived next door to the venue for several years, but only found out last week that it's a service that exists because it's been difficult to spread awareness of the types of things that might be out there. So really, the motivation for Hibi is to try and shine a light on on this group.

Lauren  9:22 

Yeah, and I think I think that that's amazing. And I think the the fact that you are doing it with the community is really something that struck us because you know, you you always worry about some of these things being designed without those who actually using it and part of it and seeing the challenges around it. And at the heart of it. So yeah, it's it really that struck a chord with us and the fact that we've been talking with you Sam for quite some time now and trying to help you know, give our own personal feedback and contribute to helping the Hibi community I think having community At the centre is is, you know, it's clearly something that's really close to our hearts because that's exactly why we wanted to set up the f**king normal podcast. So thank you for what you're doing. It's great.

Sam  10:11 

It's such a pleasure to be part of what you guys are doing. So thanks very much for having me on this. Thank you.

Rina  10:19 

One last question, Sam. Why is it called hibi?

Sam  10:22 

Oh, good question. So Hibi has a reference to an ancient goddess of youth, which is pronounced "Heebee", H E. B E. We weren't for hibi. Nice. And we would love you to check out the app provide any feedback, you might have the app, you can search in the App Store's H i b i and you can email us at any time with thoughts feedback or otherwise on Hello@hibi.health.

Rina  10:52 

And there you have it straight from the man himself. If you'd like to give Hibi a go, download it now from the App Store or Google Play.

Music to play out...

Transcribed by https://otter.ai

Epiosde 15: Conversation with a therapist with charlotte fox weber

~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Lauren Fenton  0:00  

Hello, this is the end of our second series and we just wanted to pop on and say a few things before this last episode. We really hope that you've enjoyed this series of the fucking normal as much as we've enjoyed making it. We have loved, loved love talking to all of our guests and listening to their unique stories and perspectives. So Rina, what what's been your favourite episode this season?

Rina Teslica  0:22  

Gosh, there's been so many but I loved talking to the wonderful Tinuke and her inspiring story. It's incredible how much she's achieved to really help families find representation within the disabled community. Plus, I think Ez is super cute and I love the learning with Ez cards. I'm also actually really, really excited for our listeners to hear today's episode with a very insightful Charlotte Fox Weber. What about you, Lauren?

Lauren Fenton  0:47  

So many. I mean, I've loved all of them. But I really enjoyed getting to know the gorgeous Jazz who opened up on hers and Max's story in episode nine. Urm despite all the really difficult times she's been through her sense of humour and candour was just incredible. And I also loved our conversation with Emmett on owning your own story. It's was a lot of fun and also quite moving in parts like in the really poignant moments where he described realising he needed to accept his own disability.

Rina Teslica  1:15  

Oh gosh, yes, I loved Emmett's episode. But what about you? our lovely listener. What did you enjoy listening to? Why not let us know on Instagram at fk ing normal underscore podcast or email us directly at f k ing normal podcast@gmail.com. We'd also love to hear your suggestions for future guests or anything else that you'd like to let us know.

Lauren Fenton  1:37  

But now today's episode, we have a slightly different chat. This is a conversation with a therapist where Rina and I actually sat in the therapy room on a couch and got what felt like a free session.

Rina Teslica  1:49  

Unfortunately, while recording this episode, we had some technical difficulties and we really do apologise for the odd blip in the recording. We hope it doesn't spoil your listen to the incredible insight from our guest. Here we go

Lauren Fenton  2:19  

This is the fucking normal podcast, the cheers, tears and Friday night beers of parenting disabled children. 

Rina Teslica  2:26  

I'm Rina,

Lauren Fenton  2:27  

and I'm Lauren. 

Rina Teslica  2:28  

And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories and chat about the things that we've learned and are still learning. 

Lauren Fenton  2:43  

Prepare to sometimes laugh, sometimes cry, but hopefully leave with a shot of optimism in your arm. And don't forget we are talking from a parent's perspective. We would never presume to talk on behalf of a disabled child or adult. So expect bad language, and quite frankly, some brutal honesty.

Rina Teslica  3:02  

Because really what the fuck is normal anyway?

Lauren Fenton  3:17  

Welcome back to another episode of the fucking normal podcast. And today we're gonna talk with a therapist. So when we talk with parents to kids with disabilities, a lot of themes repeat themselves. While we all have vastly different experiences and responses, we hear a lot of the same emotions described. Often feelings of initial loneliness and confusion at diagnosis, give way to an acceptance and a real shift in our life story and life perspective. There can be big ugly emotions like guilt, anxiety, despair, denial, or hopelessness, but also positive, like pure joy, meaning and gratitude. Not everyone has access to therapy. But those who do have the opportunity to talk to a professional more often than not and provided they find the right one, find it a very useful experience. Today, our guest is psychotherapist Charlotte Fox Weber and we are going to explore some of the aforementioned themes, as well as put our listeners' questions to her.

Rina Teslica  4:16  

So Charlotte, Fox Weber is an experienced psychotherapist and writer who in 2015 founded The School of Life psychotherapy, Charlotte works with individuals, couples and groups on all manner of psychology and emotional issues. Her book, 'What we want', which is published by Hachet is a fly on the wall account that takes the reader behind the closed doors of the therapy room and looks at the desires and wants that make us human. It's both powerful and beautiful and a real eye opener onto the realities of therapy and its transformative powers. Hello, Charlotte and welcome to the podcast. Hello.

Charlotte Fox Weber  4:47  

Thanks for having me.

Lauren Fenton  4:50  

I love your book, by the way, and this might be quite creepy, but I've been listening to it on Audible. So I've had you in my ears like everywhere. 

Charlotte Fox Weber  4:58  

Oh gosh. It's not really creepy at all. I loved doing the audio recording of it actually, it was really interesting. But I felt, I felt guilty that I had to do the voice of my clients, because I felt like who am I to speak for anyone else?

Lauren Fenton  5:16  

Yeah, of course, that's really strange experience.

Rina Teslica  5:20  

So why don't you tell us a little bit about yourself and psychotherapy, what you do? What's your job? How do you help people?

Charlotte Fox Weber  5:29  

I work with people from all walks of life, adults. And the issues range incredibly. I tried to keep it really broad for what I work with, because someone can arrive with an eating issue and actually want to talk about a marital problem. And the way problems get diagnosed or identified can can just be a reason to come through the door. But very often people start therapy, not really sure what they want out of it. But knowing that something is unsettling, and that they want deeper exploration

Lauren Fenton  6:09  

Is it normally a crisis that precipitates people going to therapy?

Charlotte Fox Weber  6:12  

It can be a crisis, with the couples I work with. It's often unfortunately, a crisis that brings people to the point of wanting slash needing therapy. But actually, when you're not in a crisis, that is a really great moment to get therapy, even though it can be counter-intuitive, to kind of look at what's wrong when things are going well. But it's actually when you're robust and able to have insight and can afford emotionally, to dig deeper. Because when you're in the throes of a crisis, you're you're often triaging and you're not necessarily in the headspace to be able to get insight. It's it's more about getting support, and, and getting through it. So therapy is absolutely helpful for those moments. But when you're when you're wanting to really understand something about your own inner workings, I think if if life is peachy and somewhat peaceful, not in an absolute way, but just reasonably so, then that's the moment to get therapy 

Lauren Fenton  7:22  

To do it, yeah. In fact, I think our first guest on the podcast ever, Genevieve, she said, What in her kind of what would be her advice to other parents... And it was like, actually, I can't really advise this, but getting therapy before you're a parent.

Charlotte Fox Weber  7:39  

I just in the past 10 years, I think people have changed their attitude towards this 

Rina Teslica  7:44  

That was exactly what I was gonna ask. Because there's been such a shift in accepting psychological issues and being much more conscious of our issues. Now, compared to my parents and a gen, maybe even two generations older than I am. It was always more of a taboo, like you dig deep and you get on with life, you didn't really think about your traumas. But now there's been such a shift in mental health is such a big thing. Have you noticed more people are coming to your door.

Charlotte Fox Weber  8:13  

I mean, since the pandemic, therapists are all quite busy, that has been going on for for quite a while, the combination of people being in crisis and emotional issues being less stigmatised. I think it's still, unfortunately, a somewhat rarefied privileged thing to do, because it's still expensive. And the NHS is just a long wait, and doesn't really touch the sides. If you have deep issues that you want to get help with. And then you have a few sessions, it can be a start.

Lauren Fenton  8:53  

I think like anybody listening to this, who's experienced having a kid with disability or special needs, it's become a whole part of my identity that I didn't have, I guess being a parent changes your identity and changes your life story, fundamentally. But I think more than that, it gave me a window into or access into this world of disability that I just wasn't part of before. And that's changed. I believe that's changed who I am. And I talk to a lot of people say the same. But do you think something major happening in your life and it doesn't have to be that it could be I don't know, grief or a particular trauma? Can you shift as a person quite fundamentally as a consequence of those things? Or is it just that it brings out different parts of your sides of you?

Charlotte Fox Weber  9:41  

I'm really in favour of identity crisis, which sounds a little bit perverse of me. But I think, I think that the real tragedy is when adults stop having crises and they just stagnate, and it becomes a life of quiet desperation. And, and I think it's incredibly painful to have an identity crisis. So I do not want to make light of it, it can be unbearable and terrifying and full of uncertainty. But it also is a crack that allows for the light to come in and allows for, for growth and possibility and adjustment. And when you go through something that is a huge situational stressor, it's going to change your frame for, for how you can picture life, how you picture yourself, and then maybe there's a side of you that resists that and wants to kind of prove that you're the same old you that you always have been. And I think some of that happens anyway, with motherhood of wanting to to be who you always were, and have that thread of consistency. So I think it's paradoxical. And in a way, it's like Theseus is ship in ancient Greek mythology, where the ship is constantly undergoing refurbishments and changed parts. And there are different oceans. But is it the same chip. And I think, I think when it comes to our sense of self, if we can, if we can just take a kind of widely accepting attitude, you can have an identity crisis and and change who you are in a lot of ways, and you are still allowed to be the same you you've always been. So in that sense, you can have your cake and eat it too.

Rina Teslica  11:35  

What kind of advice would you give us so that we become better at saying, "actually, I need some time alone? I need to like go do something else" or whatever. I know, I struggle with it massively. I tend to snap. Help, essentially!

Charlotte Fox Weber  11:51  

Do you snap when you're at the point of having been quiet and said nothing? 

Rina Teslica  11:56  

Yes, seething. And then just snap! 

Charlotte Fox Weber  11:59  

Yeah. So speaking up earlier, before it becomes a kind of urgent situation is part of it. Asking for help is incredibly difficult. And I think, I think we have to respect the resistance in us as well. Because with all of the kind of destigmatizing of mental health problems, there's, there's actually a weird kind of pressure to be okay with talking about these things. That just isn't how it plays out. For all of us. And I think I think resistance is deeply ingrained, when you hurt yourself or when something goes wrong. And you don't want to admit that actually, you need support. It's like, this feeling of shame sometimes. It's also a stubbornness. It's a wish to be omnipotent, and autonomous and needless and not depend on anyone. So it feels like surrender to sometimes say, Can you help me? It can also be complicated interpersonally, when you have to ask for help from someone you don't totally like, or you're then going to have to be grateful to that person. I mean, there's shadowy sides to help and being helped. Yeah. Like, who are you enraged by? Who do you not want to be beholden to? Who do you hate having to show gratitude towards? I can be quite anti gratitude just to

Lauren Fenton  13:29  

Great. And I think, I guess just, that got me thinking that because as a as a parent, and I know, I experienced this, that that kind of feeling of, I need to keep it all together. And you know, as a, as a parent, you feel like, well, you have this huge responsibility for a child or any number of children. And when that child is additionally vulnerable, and needs so much from you, and we'll need so much from you for a long time, I think there is a tendency for people to feel I need to be strong enough to do this, I need to do this alone, or I need to somehow like turn into this superhero who can fix it and help them and support them through their lives. So I think it's very difficult not to put that pressure on yourself to not need the help and not... to cope, the pressure to code,

Charlotte Fox Weber  14:20  

the pressure to cope and, and acknowledging limits is really, really hard. I remember working with a mother of a child who had recently been diagnosed with severe autism, if I can say severe, was non-verbal and was never going to be and she was coming to terms with this. And she felt like she needed to have endless capacity. And one day, I said, you have limitations. And she was massively offended by me saying that in a really healthy way. We had a strong enough alliance that we could work through it, but it opened up a really interesting Be helpful conversation about how not having limitations had been a point of pride and having endless capacity always being available. And she'd introduced herself to me by saying, I'm everything to everyone. And she had to let go of some of that. But limitations, limits can be, can be a challenge. worthwhile, though.

Lauren Fenton  15:25  

Yeah. And I guess it's also then communicating, it's not just communicating for help or saying, you know, putting your hand up and needing help. A lot of people have talked about when you have a child that's going through a lot of medical complications, or you as a parent are struggling with a child with Special Needs. Some people come towards you, and some people go away from you. And think its true in life that that happens. I guess, how do we get better as parents of communicating more broadly out to people what it is that we need from them?

Charlotte Fox Weber  15:59  

Well, I mean, I think that facing disappointment preemptively, is also important that there's absolutely help and support and there are going to be nightmarish people who disappoint you and let you down and do not rise to the occasion, even if you spell it out, in skywriting. Hmm. So some of it is about how you communicate, but some of it is also accepting that not everyone gets it.

Rina Teslica  16:28  

Yeah, I've made peace with that massively. And it's been like such a relief, like, and it especially in like, some friendships or some family relationships. Especially in the beginning, when you have a child with a disability, you expect everybody to be as accepting as you are of your situation, but people aren't. And I would get very offended in the beginning. But now I'm just like, you're not at the level required to be accepting, and that's fine for you.

Charlotte Fox Weber  16:57  

Right 

Rina Teslica  16:58  

and move on. 

Charlotte Fox Weber  16:59  

But I mean, also, there can be all the stages of grief and rage and resentment, and, and that's allowed to, I worked with someone who had been blamed by her in-laws for causing the disabilities of her child. And she actually put together a file, showing all of the medical reasons and all of the doctors explaining how this had happened and how it was not her fault. Although she, she was still so desperate to prove that it wasn't her fault. And it was so painful. It was painful witnessing her wanting to justify wanting to defend as though she had to. And she, she spelled it out for her in laws, and did not get a reply. But it was clarifying for her. Because up until that moment, the way it had played out in her life was so pernicious and so destructive, because not only did she feel let down by her in laws, her husband blamed her for how she had described the situation for why his family wasn't understanding. So there was there was a ripple effect, and having the clarity that they were really actually just not not particularly kind and not even respectful. Having that clarity was really liberating for her.

Lauren Fenton  18:37  

Yeah, really dark. Relationships are hard. I mean, we've talked about relationships a lot on this podcast. And I think, you know, it's not just your partner relationship, but your friends, your broader family. Yeah, getting alignment around how to best support a child with additional needs. And I guess reacting or responding and processing some of the trauma associated with that, in different ways, can really be damaging to those relationships.

Charlotte Fox Weber  19:12  

And I also think that with postpartum depression, it's unfortunately quite limited in time scope, a year and then that's it, when actually, it's something that can go on forever, and people stopped checking in. I think, the whole help thing like you have helped visitors at first. I don't know how often you get asked how you are meaningful way.

Rina Teslica  19:37  

Rare. Rare. Rarely! How are you? It's all about the child!

Lauren Fenton  19:42  

How's the child? How are they doing? What's new, you'll go into a health professional, you know, they have your medical records, the child's medical recoreds this is, and you'll have seen them maybe six months previously, you almost have to replay that child's entire medical history from birth so every appointment at If you talk about your birth story and talk about, like, what professionals are involved in that child, what procedures they might have been through. And the expectation that you will do that every time and not not only kind of get it right, and remember everything, all the details of all the professionals involved, but also that you're kind of okay to relive that in that clinical environment every time.

Charlotte Fox Weber  20:25  

Is there any part of it that has helped you get used to the story? Because you've been required to tell it so many times?

Lauren Fenton  20:32  

I think it always does. And I think actually, as with anything, if you've had something that you initially is hard to explain to people, the more you explain it, the more blunt you become in your explanation of things and kind of distance yourself from the description.

Charlotte Fox Weber  20:46  

Yeah. Although that can be hard to because then then there can be judgement.

Lauren Fenton  20:51  

Yeah, a lot of time, I'm asked about Bea's diagnosis. And actually, what happened in her initial birth story is I was on my own stood up in the hospital, and I'd just given birth, and they were doing the head to toe and my husband had gone home, and they sort of said, Oh, she's got a cleft palate, I think she's got Down syndrome. And it was just like, just a sort of an additional thing. Not that there's anything wrong with Down syndrome. And and but at the time that came completely out of the blue, she doesn't have Down syndrome. But I can see why they might have thought that but it was just the way it was delivered. They say why did they run all this genetic testing with her? Well, how did they find out when she was so young? And it's because you know, and I'm grateful to that nurse who incorrectly called Down syndrome, because that meant that we ran a whole load of tests on Bea that wouldn't have been done otherwise. But that moment, and that, like experience is quite a quite a traumatic memory for me.

Charlotte Fox Weber  21:48  

Yes. So yeah. So she was right, that there was something wrong, though

Lauren Fenton  21:52  

She was right to say that there may be some thing that's unusual about Bea. That meant that genetically they wanted to send additional testing. And actually, subsequently, she went into neonatal because she had a breathing episode. But yeah, it's just, it's funny replaying that like you say, I have to replay that a lot to professionals, and it comes out blunter and blunter each time,

Charlotte Fox Weber  22:15  

What what would you say to that nurse? If you did meet her now?

Lauren Fenton  22:21  

I would probably say, I probably say it's okay. Because she felt really bad because she spent the next I was in hospital for a week after that. And she kept coming to check on us and kept checking that we were okay. And there were lots of people saying like, sorry, and stuff, but without saying sorry. And I think she felt like she'd fucked up. So I would say it's okay. And actually, I'd be grateful to her that she had, although she made a mistake not and I don't mean a mistake by calling down syndrome, I think a mistake by the way that she delivered it and the fact that she probably wasn't qualified to clinically diagnose that anyway. So her kind of flippancy, I would say, was a mistake. But actually, that precipitated a whole load of tests for Bea and for us, that meant that we were knowledgeable about these chromosomal deletion from a very, very young age, unusually, so I think that's helped her to get lots of intervention and support from really early on.

Rina Teslica  23:25  

Yeah, I, for me, it depends on how hormonal I am on the day. Like, sometimes I don't mind if I'm feeling good, or Lua's having a great time or day or whatever. I'm like, yeah, she's got Noonan syndrome, and I go through the whole spiel. Other times, if it's been a rough day or a rough month, like I think we met a geneticist a couple of months ago, because she's now come into a whole... Basically, they're colating all of the kids with Noonan syndrome in the UK under one scheme, which is like, fantastic. And I pushed for her to get on to it, bla bla bla. But when we went in, I was just like having a shit old time. And then you meet the doctor who's never met you and you have to go through the spiel, and I just went, do not have it on the computer. He's like, Yes, I do. But I want to hear it from you. And it's like, why it's there. I just really don't want to get into it right now. So I had to just suck it up and like, go through it all again. And obviously, when you're hormonal, you give more detail than maybe I would have done or like more intimate details, actually how I was feeling at that moment. So maybe it was a positive because then he got a much clearer picture than if it was just me giving the spiel of her diagnosis and the time rarara, you know,

Charlotte Fox Weber  24:39  

yeah. Why do you think that it's all hormonal? I think it sounds quite reasonable.

Lauren Fenton  24:46  

Agreed, yeah. Whether you're hormonal or not.

Charlotte Fox Weber  24:49  

Yeah, I think that's slightly making light of it. Or like explaining yourself when you don't need to because actually, why did he need you to tell him? Why did he need to hear it from you? Was he offering you psychological feedback? I mean, a therapist, a therapist might say that and it would make sense, like, I want to hear it, in your words, rather than just what I know, from a file. But a doctor is not serving that purpose. And very often part of the pain is that you go through details where there isn't a kind of helpful feedback. It's not like, it goes into the void. It goes into the ether, and you're left like, I just said it and, and like, what do you make of it? Or like, you want something back? And I think there should always be clarified purpose, to asking those questions.

Lauren Fenton  25:45  

And worse still they're asking you this, often, when your child is sat right next to us, and it making you play it out, they want to hear that all the details in case they can pick up on something additional. But your child's sitting there, whilst you're describing them in these medical terms, you know, what's in inverted commas "What's wrong with them?" And how's that going to be for a child, when they hear that again, and again, I really worry that Bea hears me saying these things. And it's, that's now how her identity, her narrative, and that experience is going to stay with her and define who she is. And it's really tricky, because you spend all this time using positive language around disability, around owning it and giving them power by owning some of those labels and knowing what they need and what they can get and all the rest of it. But when you're describing them in medical terms, it does feel quite othering and focused on what they can't do, which is it's as parents, what can we do to stop them from feeling like that and taking that into that adulthood?

Charlotte Fox Weber  26:52  

I think that's a really interesting question. And to broaden it out, if, if I may, I think that core traumas can become quite foundational in our sense of self. And that can be true for children of divorce, children who have something exceptional about them, something that marks them as different. I know someone who lost a sibling at a very young age. And, and that is who he is, even though he's in his 50s. And someone else whose father died when he was a child. And it's still like, the intro of who he is. And I think, I think we get attached to our, to our kind of core struggles in a way where it's helpful if we can have a patchwork sense of meaning that it's one part. I mean, I had heart surgery when I was four and a half. And for a long time, I was used to my parents always saying that about me, it was always the first thing said, anywhere we went. And I still sometimes revert to it, where, for some reason, it can make me feel vulnerable. But then I'm not sure. I'm not sure why. And it's almost like an old habit. But it can also, it can also be a weird power move, which I know sounds very extreme. But actually, my husband is okay with me saying this, he admitted that when he was eight or nine when his father died, he felt quite powerful when he would say to people that his father had died because people were usually lost for words or kind of in awe or felt for him. But he knew that he had something to say that was quite significant and would kind of shock. And I think sometimes that's part of what makes it a thing. To kind of hold on to not not in all cases, but I think I think it's really interesting to think about the story we tell ourselves about ourself, over and over and over again, and to tell it to see what it's like to tell it from a different perspective, sometimes even breaking it up into second person, third person.

Rina Teslica  29:15  

That's so funny, because when I first had Lulu and you know, like a year or so in and you're the mother of a child with a disability, it was such a negative and it was something not that I was ashamed of, but it was something I didn't want to talk about or I wouldn't bring it up. Especially when I was meeting people I didn't know but now it's like something I'm incredibly proud of. And I it's completely flipped the switch on to how I see myself how I represent myself and it's not something that is that I won't talk about or downplay or like, before, it was like, oh, yeah, I have a daughter. Yeah, she was born. She's got some, you know, issues and that's,

Charlotte Fox Weber  29:57  

but you would try to minimise minimise and normalise? Yeah, and not make it the thing.

Lauren Fenton  30:05  

I guess now this podcast we are, in effect owning the narrative and telling that story. And proudly, yeah, I guess it's maybe thinking of ourselves and how we've switched how we own the narrative, and helping our children to do that with their own story as they get older, in whatever way they can.

Charlotte Fox Weber  30:26  

So yeah, I think it's really interesting to think about how how your children hear this story and what they choose to do with it. Even if there is a shadowy side, in fact, I would urge them to make use of the shadowy side. I just am admitting now as a teenager, especially I, I think I found it beneficial to say, I had heart surgery when I was four and a half, like, like, it actually gave me something. Yeah. And it protected me in a certain way.

Lauren Fenton  30:59  

Yeah, I probably drop that in a bit with my parents divorce, something that was big in your life that had an impact on you, and being able to kind of describe that to other people. I'd like to move on to some questions from our listeners. But I think there's probably two other areas before we do one is a big emotion that I think we all feel, as parents full stop guilt, guilt, that you are not doing enough for that child to support them, you know, getting interventions, therapies, teaching them stuff, because, hey, reaching milestones is never easy. And it's really fucking hard for some kids and some milestones, and some they will never meet. But also kind of guilt, I feel guilt that I'm sometimes treating my two children differently. And then the darker girl, I guess, the shade part that you described before the guilt that you sometimes think, Wouldn't it be easier if you could just talk? Or Wouldn't it be easier if you could just learn to put your clothes on yourself? How do we get better at managing guilt? Help us, Charlotte, please.

Charlotte Fox Weber  32:03  

I feel for you when you say that, and I want to shake you and and just say just don't Don't, don't feel guilty. I think that guilt is such a socially manufactured emotion. Compared to shame. It's so social and strategic. And it can even be performative. Like it can even be, especially with maternal guilt. I've found myself faking it. And I don't even realise that I'm faking it until I kind of then think about it, but like, I'm going along with pretending to feel guilty about something I don't actually feel guilty about. And I think it's a bit of a sneaky emotion that wears costumes, and we need to be smart about guilt. Because it's, it's a bit of a shit stir. Like,

Lauren Fenton  33:04  

I like that! Go away you shit stirrer! 

Charlotte Fox Weber  33:07  

And when, when you're dealing with something that requires true remorse, it feels really different. When you have actually made a mistake, and I think, I mean, I'm in favour of regret, which is, for some reason, not acceptable, like guilt. bugout everyone should have it, especially mother's regret, have no regrets. Like, I don't know why regret has gotten so left out, but like, regret is a lot more honest. Yeah, I think like, sometimes I simply regret something. But actually, with the guilt thing, like, that's when I get myself into trouble. And when people get themselves into trouble and bend over backwards or overcompensate or act out or shut down. It's It's an emotion that is just full of disguises. So what is it covering up? Really, I would, I would kind of try to take away the costumes and see what's underneath.

Lauren Fenton  34:13  

Yeah, and I guess it can connect back to some of the things that we were talking about earlier. So you might as a mom feel guilt for not doing enough but you will tell yourself that you feel guilt for not doing enough. But really, perhaps what you need to be doing is asking for more help, so that you can do all the things that you want to do. You know, I feel like there's I like that idea of kind of analysing what is it really trying to tell me so? Yeah. Did I make some wrong choices there? Is that one I'm feeling guilty about? Or is it..

Charlotte Fox Weber  34:43  

But did you? Or did you do the best you could? Actually it's a hard situation. Yeah. Because I mean, one of the weird things about life is the people who should feel guilty. Tend not to, and then people who haven't really done anything terribly wrong, are the guilt ridden ones. I mean, I feel like it is something that can, it can make you play small. And I think that's what pisses me off about guilt. That and kind of gratitude, if I sound like the Addams Family, because gratitude, although I like being appreciative and actually feeling grateful, but gratitude and guilt, if you think of the two G's, it's another way of saying, shhh... just go along with whatever you're doing, you're not doing enough and you should feel very lucky for what you do have. It doesn't really allow for protest. And I think guilt can sometimes cover up rage.

Lauren Fenton  35:52  

Anger, yeah, yeah, you're right.

Rina Teslica  35:54  

Definitely. 

Lauren Fenton  35:55  

I like that. Yeah, okay, so fuck the two G's. Yeah, that's some weird connotation. But let's just say anyway. 

Lauren Fenton  36:13  

You hear a lot about post traumatic growth. But when you've got a kid that's going through, you know, might be going through lots of surgeries or things are happening on and on, it's not finished. It's not a post. It's not something that's happened and it's static. How does one cope with trauma or deal with trauma, both for yourself and the child? If it's ongoing?

Charlotte Fox Weber  36:39  

I think, again, with great difficulty, and 

Lauren Fenton  36:46  

thanks for the honesty. 

Charlotte Fox Weber  36:47  

And I think I think that the pressure to flourish sounds quite annoying, if you are supposed to kind of have the best attitude ever. I. I feel like that could be burdensome. And, and sometimes, I mean, I'm in favour of post traumatic growth. It doesn't mean it has to kind of follow a timeline. Because I think, I think along with gratitude, and all the bad Gs, there's a lot of pressure to let go and to move on. And how do you do that when it's still happening when it's playing out when it is no end in sight? There's no end in sight. And it's relentless, and the shape keeps changing. And if you feel like you've used up the kind of dramatic space, but it's still happening. I think one of the things that happens, that's really difficult when it comes to getting help and support is that people have a degree of almost ghoulish fascination with other people's sorrows. Yeah. And it's limited. And when the kind of dramatic arc has finished for them, it may still be going on for you. And you're still living it day in and day out. And they've stopped giving themselves goosebumps by making grand romantic gestures to be helpful. But there is a kind of tenacity required for for just continuing to deal with pain and sorrow. And I think, I think sometimes that is the growth. And actually I like a line of Freud's. I know Freud, isn't controversial name to ever say now, but he said, where we cannot fly, we must limp. And I think sometimes letting yourself limp along is heroic, and all you can do.

Rina Teslica  38:43  

I've certainly felt like that many times in the last seven years. If you just

Lauren Fenton  38:48  

keep on limping, yeah, keep on trucking. Yeah, keep on trucking! Yes, exactly. Thank you, Charlotte. I think we could probably I mean, we are actually on a couch for our listeners, we and I feel like we this was just like a taster session, we're gonna have to find out your hourly rates and come back. Yeah. We could stay here a week. And that's been really, really interesting. I'd now like to kind of put a few questions to you that people have wrote in. So the first one from Olivia is how do you deal with your own emotional dysregulation when you're dealing with a child that has a lot of emotional dysregulation? So it's so hard not to get triggered and snap? And then here comes that word again? Then how do you deal with the guilt afterwards?

Charlotte Fox Weber  39:33  

Great questions. I think that first of all, unless you're robotic, I certainly uncomfortably relate to getting dysregulated when children are dysregulated. 

Lauren Fenton  39:46  

Yeah. It's that "CALM DOWN….Oh!”

Charlotte Fox Weber  39:51  

but acknowledging the separateness. And in a way, this space between self and other I think is Oh, was useful that you were not emotionally responsible for anyone, including your child, which sounds kind of stark, but it was this supervisor who said to me years ago, you're responsible to people, but you're not responsible for people. And that applies for absolutely everyone. And even when it's your child, and it's painful, and you can see that your child is suffering, I mean, it can feel unbearable, but it's also not you. And I think I think that having that kind of internal boundary can be helpful. And it doesn't mean that you don't feel it, it doesn't mean that you don't empathise or try to offer solutions. But you acknowledge the separateness and the lines of demarcation.

Lauren Fenton  40:56  

That's really interesting, because I think, as a parent, that's really hard, just full stop. And it you know, as I guess, it becomes more apparent as your children get older, especially like if I'm thinking of my older daughter, on her path, she, you know, she's very independent now and fiercely opinionated, and you see, you know, that 

Rina Teslica  41:15  

I wonder where she gets that? 

Lauren Fenton  41:17  

Haha. well, and that differentiation is very clear. But I think it's really important to remember that separation, when you might have a child that's nonverbal, or you know, isn't kind of developing in the same neurotypical path. But you've still got to really hang on to the fact that you're separate and their emotions are different, and they're going through different things.

Charlotte Fox Weber  41:36  

But when you've been someone's advocate, of course, it's going to be spongy, in meshed boundaries, and you're, you're mentalizing. for them, you're verbalising for them, you're communicating for them. Of course, it's going to be blurred boundaries. So I also think that dysregulation happens, so to the second part of the question, like, just give yourself a massive hug. And self compassion is a very cheesy term, but it's a really nice one. Thanks. There's an old Sex in the City episode where Charlotte? Both remember, yeah. After after one of her children ruins her dress. Who doesn't have that, like, on a daily basis? I mean, also, it's all dis regulating? So yeah, guilt is really too strict already. However, dysregulated Do you feel? 

Lauren Fenton  42:39  

Yeah. Great.

Rina Teslica  42:42  

And another one from Caroline, how do you deal with overwhelm, and burnout?

Charlotte Fox Weber  42:47  

Those are such big and relatable concepts that I struggle with. all the time, partly because I like being overwhelmed. So there's a weird ambivalence I have towards it from not overwhelmed then what like, I might be empty!

Lauren Fenton  43:09  

It's how you function. It's how you get your energy and drive. Yeah,

Charlotte Fox Weber  43:12  

yeah. Burnout, I think can come in really sneaky ways. It can apply to motherhood, I think there should be parental burnout as a thing. Like, why is it only in the workplace that it's used? I mean, I don't know if it's less true, more used these days, in communities that you're part of maternal burnout, but like, why is that not an official diagnosis? Yeah, yeah. I think the reason it isn't, is because we have no one to go to, like, there is no line manager who is gonna say like, oh, okay, we'll get someone 

Lauren Fenton  43:53  

get some paid leave. Exactly.

Charlotte Fox Weber  43:56  

It stops with us. But like, we're also all of the hierarchy and like, so maternal burnout, if it were something that was officially recognised, I'm not sure what the support system would.

Lauren Fenton  44:10  

There are short breaks and things for parents who have kids with disabilities. And I, you know, we'll put some notes in the show notes for anyone who doesn't know about those. So I think there is recognition that people do need time to rest, particularly if they're looking at your child that needs kind of constant around the clock care. But yeah, I agree. I don't think there is enough. There's an assumption that you will just keep going, you'll keep on limping. Yeah. And sometimes, like, I guess it comes back to asking for help as well and saying, hands up, I need a break.

Charlotte Fox Weber  44:42  

Yeah, well, so I'm really in favour, as kind of contradictory as it sounds, when life is unbearably full and the to do list is overwhelming. And I'm time impoverished. That is always when I decide to do something frivolous. something utterly unnecessary that I don't have to do simply because I want to do it. And I think a lot of times when, when we're burnt out, it's this feeling of being beholden to endless responsibilities and obligations and shoulds. And even something like going to a friend's birthday, I should go I should I have to get a gift. Like it stops being joyful. And sometimes insisting on frivolity is actually a light relief and being playful. I think playfulness is an antidote to burnout. And it just adds a different dimension. Yeah, 

Rina Teslica  45:43  

I will live more frivolously 

Charlotte Fox Weber  45:45  

It's always possible every day, even if it's five minutes, it doesn't have to be a dramatic overhaul of your whole life. It doesn't have to be redefining the mission statement of your core values, but letting playfulness matter to you. And not just facilitating play, because we know mothers are great at facilitating play and creativity. But facilitating is not the same as actually being playful.

Lauren Fenton  46:10  

I like that. And I think it's like a reset, isn't it? I feel like sometimes as well. I think of parenting and Bea and all the things that we do. And I have endless lists about you know, people I need to call or appointments we need to rearrange or things we need to do or things I want to do for her. It's quite nice, on occasion to just go right. I'm going to make an excuse. We're going to sack off the physiotherapy today. And we're going to do this instead. And I know that's not always possible. Yeah, that bit of fun, or a change can be really, really liberating and resetting.

Charlotte Fox Weber  46:46  

Break the rules in a fairly harmless way. 

Rina Teslica  46:50  

Yeah. I totally see that. Yeah.

Charlotte Fox Weber  46:53  

And it's kind of expressing your own individuality in a way when when you stop just going along with the shoulds. 

Rina Teslica  46:58  

Yeah, I think because especially like, being a parent of a child with a disability, you have so many rules in life can't do this. Can't do that. So we're big in my household of just like, fucking off and just doing random shit for like, fuck it. Because it's like, there are so many barriers in our lives that, you know, yeah. So I'm totally

Lauren Fenton  47:21  

I love that. We've got another question. One from Jen. She's interested in the connection that we share with our children about how our anxiety goes into them and vice versa. Conversely, when we heal ourselves, it helps them too. I know it happens and works. But can Charlotte explain more of the how

Charlotte Fox Weber  47:40  

I think it's incredibly self aware as a question. I wish I could just send that to my whole family. Extended family, I think that it's easily forgotten that our anxiety has an impact on others. And that it goes both ways. I think that containment can be a lot of pressure on the mother at the same time. So there are moments when you're going to kind of feel leaky and wait, and it comes out and gets projected. I think honesty and awareness can be a relief for a child as well, sometimes saying, I think I may have put that on you. And that was about me. It wasn't actually about you. I recently was called out by my eight year old for just projecting an anxiety onto him by telling him repeatedly not to worry about something. And he said, You have told me so many times not to worry about this, that I feel like you're demanding that I worry about it. And I wasn't worrying about it. But me. And now I am. Yeah, put me back in my place. But just being aware of it and seeing how it happens is the best we can do. I don't think that it's something that requires perfectionism. I mean, if the goal is to simply never project anxiety onto your child, I think that that's too big an ask.

Lauren Fenton  49:23  

Yeah, it's not real. They need to see you in all your

Rina Teslica  49:27  

variations. 

Charlotte Fox Weber  49:28  

Yeah, well, and I think sometimes seeing emotions and parents is actually validating and gives you permission.

Lauren Fenton  49:36  

We've got another question from Natalie, how do you deal with a partner that's slowly disconnecting from you and your child and is struggling to come to terms with the reality of what you're fighting? Oh, I know. It's a tough one. So I guess it's about people pulling apart over a situation where they've got a child with a disability.

Charlotte Fox Weber  50:02  

Yeah, and that certainly happens. And it can be unbearable to even want to acknowledge that it's happening. But I think it should also be normalised. I think that connection itself. I mean, I am a bit of a connection Nymphomaniac, if I can say.

Lauren Fenton  50:21  

G spots, nymphomaniac, it's all coming out Charlotte.

Charlotte Fox Weber  50:28  

Yeah. But it's become like a superfood, it's quinoa, or kale. And then if you don't connect, there's this panic because it feels terrifying. And the thing is, disconnect happens. And it is, it's really hard. But it also is survivable. And I think we should get more comfortable with talking about disconnection. Rather than just "connection, it's the best, it's the best", because we don't have permanent connection with just one person throughout life. And whether that's your child, or your spouse, or your best friend or a parent, I mean, disconnection happens, when it starts to become a full severance, I think it can be incredibly disconcerting, and naming it is hard and can be scary, but it's also really important. I also respect people who, who want to hold on to hope, even if it's unrealistic. I mean, I knew someone in her 80s, who believed that she was going to have a romance with a man in his 40s, who was a well known movie star, she really wanted to hold on to the hope that it was going to happen. So I don't think it's always necessary to beat people over the head with likely reality, we can, we can have fantasy, but expecting something to be okay, if it is not necessarily going that way. It's pressure. I think a lot of it is about uncertainty as well. And it's very difficult as a mother to allow for uncertainty. And sometimes we want to kind of have a grand plan for our kid. And it can be, it can be a little bit humbling to say I don't know how that's gonna work out. And if you feel a disconnection that's pervasive in your relationship, and, and the kid is possibly feeling it too. It may be uncertain for what that is going to mean. Like there are time periods of disconnection, and then reconnection, and reconnection can be so joyous, I mean, I'm a big fan of rupture and repair. And sometimes, when you disconnect in the relationship, and then you come back together, it's better than ever. And you needed to have a bit of a rupture in order to get to the repair. So it can mean many things. But I think sometimes just acknowledging the uncertainty that that it's not all guaranteed to be exactly perfect.

Lauren Fenton  53:06  

I think we get good at managing uncertainty actually, is that what surprises are going to come your way or things left field are going to happen. It 

Charlotte Fox Weber  53:17  

surprises? 

Lauren Fenton  53:18  

Like new diagnoses or new challenges, right? Yeah. Or maybe medical interventions or surgeries? Yeah. And pop are ultimately not having certainty around the child's future. But the reality is, nobody has certainty over their child's future or what that childhood and adulthood is going to look like. So trying to get comfortable living on that. Yeah, any words on that?

Charlotte Fox Weber  53:48  

You are so right, that no one has certainty. No one has certainty about what their relationship will be like in 10 years time either. And yet we forget that so easily. So you may have a huge advantage of actually knowing how uncertain life can be. Yeah, learning to live with uncertainty. Yeah. Because there is a certain ignorance of thinking that things just go a certain way. If you have a child who hasn't been kind of labelled as anything. Other. Yeah. There's, there's no sense of major surprises ahead. Yeah. Yeah.

Rina Teslica  54:26  

That's so funny, because, I mean, it's like an anecdote, but I struggled with this. I like to have like plans. I like to like know what's happening, I think was when we got Lua's diagnosis. I wanted to know, what can she do? What can't she do? What does this mean? And they were like, I don't know. Like, she's very rare. We don't have any idea, which was very difficult for me. But then you go through acceptance and you move on. And I was still struggling at that point, but we were in a black cab. And the cabbie was like, Oh, she's so sweet. And he was talking about her and then he dropped. He's like, Oh, I have a daughter, she doesn't have disabilities, but she struggled very much with mental health and had very big issues. And Arbs and I left that that cab thinking, Yes, we have something that's very uncertain. But here's this cabbie who had a daughter without, you know, disabilities or special needs, but then ended up going down this path with something so uncertain. People go through shit, man. And it's not just you,

Charlotte Fox Weber  55:25  

perspective gets so easily lost. Yeah widening the vista is always helpful. There can be incredible self involvement with suffering as well. Like when you're going through a shit time you hate yourself, and you're all you can think about. It's really quite demanding and draining. So having those fresh encounters I mean, that can even be a little bit playful, like talking to a stranger.

Rina Teslica  55:56  

Don't know what they could tell you.

Lauren Fenton  55:56  

Oh, yeah, exactly, like talking to you, Charlotte, who is no longer a stranger. And I'm sorry, but we're kind of running out of time. I think we could talk about so many more themes with you. But 

Charlotte Fox Weber  56:07  

It's great talking with you guys. And I have, I've loved the unexpected places we've gone to

Lauren Fenton  56:15  

same. thank you so much. Yeah, thank 

Lauren Fenton  56:20  

Thank you so much for listening to the fucking normal podcast. We love making this podcast. Yes, we do. We are part of a much bigger team, almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences.

Rina Teslica  56:41  

So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at fucking normal podcast.com That's f k ing normal podcast.com you can join us on Facebook and on Instagram at fucking normal underscore podcast. That's f k ing normal underscore podcast. You can get all the links and more information in the show notes below.

Lauren Fenton  57:05  

So thank you so much for listening all the way to the end. We'll see you next time. Byeee 

Transcribed by https://otter.ai

Epiosde 14: Intersectionality, community & representation with Tinuke Awe

~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Lauren Fenton 0:16

This is the fucking normal podcast, the cheers, tears and Friday night beers for parenting disabled children. I'm Rina, and I'm Lauren.

Rina Teslica 0:26

And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories, and to ask about the things that we've learned and are still learning.

Lauren Fenton 0:40

Prepare to sometimes laugh, sometimes cry, but hopefully leave with a shot of optimism in your arm. And don't forget we are talking from a parent's perspective, we would never presume to talk on behalf of a disabled child or adult. So expect bad language, and quite frankly, some brutal honesty.

Rina Teslica 1:00

Because really, what the fuck is normal anyway?

Lauren Fenton 1:15

Welcome back to another episode of the fucking normal Podcast. Today we're going to be talking about intersectionality and more specifically creating community and representation. First, a quick definition: 'Intersectionality' is about the interconnected nature of social categorisations such as race, class, gender or ability, which are regarded as creating overlapping or interdependent systems of discrimination or disadvantage. Rina and I are both aware of our own privilege and the lens and experience of the world that we bring to parenting disabled children. We are both white, straight and cis gendered. We have financial and educational advantages. We have homes, supportive families and security, not to mention the fact that we are both neurotypical or non disabled. Our children may carry the labels of disabled, or SEND and may be female. But they also have all of the advantages that we've passed on to them by the luck that they were born with. They may be discriminated against because of their disabilities, but it's very unlikely that they will ever be discriminated against because of their race. We want a world without prejudice that doesn't judge and disadvantaged people based on protected characteristics. But sadly, this is not the world we live in. We should all be aware of our own privileges and challenge the systems that continue to enable inequalities to prevail. What if the community or role models for your identity aren't represented in the media or easy to find? As we've said many times before, community is so key to helping you feel less isolated as a parent to children with disabilities. And it's so so important that our children are able to see themselves, that role models stories and resources exist that reflect their identity. Our guest today is an absolute force when it comes to challenging these inequalities and making change.

Rina Teslica 3:00

So our guest today is the incredible Tinuke Awe. Social entrepreneur, black maternal health campaigner and early years diversity and SEND inclusion champion. She was named British Vogue Force for change in 2021. And she really really is! Tinuke earned this accolade as the co founder of five times more a campaign dedicated to improving the maternal outcomes of black women. She has two children Ezekiel age five who has autism and Eden age three, when her eldest is equal was born to UK was frustrated by not seeing any black mums at the parent group she attended. So she started her own black Parenting Network mums and team, a now 12,000 strong community. Since her son's autism diagnosis, as if she wasn't busy enough, Tinuke has been on a mission to help other black mums navigate the journey of parenting neurodiverse children and has also started a business focused on inclusive educational flashcards because as Tinuke rightly puts it, representation matters to all. Welcome Tinuke, we are so excited to have you on the podcast.

Tinuke Awe 4:02

Oh my gosh, what an intro, guys.

Lauren Fenton 4:07

I mean, you're amazing. Like, we wanted to talk to you and so glad that we could make this work because I know you're extremely busy. Not to mention the fact it's the summer holidays at the moment. How's that going?

Tinuke Awe 4:21

Yeah, I mean, it's just a pile of dust left is just, I can't these kids, I love them, but they are literally driving me up the wall. Do you know what like? It's so difficult when you're juggling, trying to like work and just there just being a lack of childcare options. And by design, you know, both of the grandmas are away. They're on holiday. They're both in London. They did it on purpose. Of course they did. Because Why are you both in Nigeria at the same time? Could you not just go another time? What's up? So, the mums that are my normal form of childcare, at least I can, I can hack it for the weekdays, but the weekends, I can just, you know, ship them off. They're both gone. So it's 24/7. Come back in three weeks, I'm going to be a pile of clothes just left.

Rina Teslica 5:22

We feel yer. I've had to bribe my mother in law to come. So she's she's here for the next three weeks. ever grateful? Imagine, I can't imagine. Anyway, can we talk about you and your parenting journey? And your kids and motherhood? What is that? Like? How has that been? Give us the goss.

Tinuke Awe 5:47

Or the goss... motherhood, I would say is such a beautiful roller coaster. I say it's beautiful. Because you've got the moments where they do things and you're like you just love your come here, give me a hug. And then there are other times where you're like, get me out of here. Just get out, obviously, I just think parenthood is a challenge in itself. There's no rulebook, right? There's no one size fits all. And everyone and their dog on Instagram can be telling you one thing, and you can read 1,000,001 books and memes and quotes. And whilst you can relate to it, it's just, it's not what's happening in your home right there and then say like, every situation is new, and you're just like, Oh, my God, Well, God, what am I doing? And so yeah, it can be beautiful, but it can be challenging and frustrating. And all these things. And I think sometimes we're just we aren't even allowed to voice those frustrations. Do you get what I mean? It's almost like, well, you should be grateful for what you have. I'm not saying I'm not very fond saying it's hard. Yeah.

Rina Teslica 6:56

Yeah, that's why we did this podcast.

Lauren Fenton 7:00

Yeah, it's hard. It's hard at every stage as well, I think there's like, I think there's an assumption as well by a lot of parents that like, Oh, this is a really tricky, you know, getting to the next six months, and then it'll be fine. And particularly when you have a child that has, you know, is autistic, or has a disability like that is going to create challenges for potentially longer or different points of that roller coaster will be maybe higher, and some of them will be lower. scarier, too. Yeah. So yeah. Tell us a bit about so Ez is autistic, can you tell us a bit about like that journey and his diagnosis?

Tinuke Awe 7:39

Yeah, sure. So I got two kids. Ezekiel's five, Eden is three, Ezekiel was diagnosed with autism in on the 24th of July 2021, that data is etched in my brain because that my life changed forever. You know what I mean? It's not, it's not that it was a diagnosis that I was particularly surprised and shocked about. Because obviously, you work your way up to a diagnosis, you've got to see all the professionals you've got to, you know, put in all the requests and do all the things. So it's not like, it came as a shock. But it did at the same time, I don't know, what led us to the diagnosis is so obviously, Ezekiel's my first child. And I noticed quite early on that he wasn't speaking, but it wasn't just the speech. There were other patterns of behaviour that had me a little bit worried, as he was a clever lad, very clever. But he just couldn't express himself, as well as the other children in my, you know, in my circle could and I realised that quite early on.

And so when he was about 18 months old, and I realised that, you know, sometimes he would respond to His name, sometimes he wouldn't. I know you can hear me. But um, you know, he'd just be in his own world, you know, spinning toys spinning around, running up and down. So what I now know to be stimming, running up and down, I'm like oh my god this boy's got so much energy, he's not communicating with me. Huge attachment issues, like dropping him off at nursery was like, I actually went back to work a lot later than planned because I wasn't comfortable leaving him in any kind of childcare setting because I was like, Look, I don't know. I don't really know. I know, it's a bit different. I'm not when he's not communicating. So I don't I wasn't comfortable leaving him, you know, in any childcare setting until I found the right one. So I even went back to work quite late. So yeah, like he would cry. Loads. Whenever I leave him at the door. You know, like so many of these things. And I got it got to just before the two year checkup, and then I'd heard that the waiting lists for speech and language sessions were like, six months long at that time, this is before COVID said If you've got to wait at least six months, so I went into a drop in, in my local area, and I was like, okay, my child's almost two, and he's not really speaking, is this something to be worried about? And everyone's like, you know, before the speech before I went to the drop in, a lot of people are giving me the, he's a boy, boy's talk later. You know, he's fine. He can hear you. If you give him instructions, he can, you know, can just about do you know, so it's just like, everyone was like, Don't worry, it's fine. But I guess in my gut, I kind of like I was like, I'm not going to do the wait and see approach. I'm going to check. And see, that's always my thing. Like, don't wait and see. Just check and see there's no harm if, if, if there's nothing wrong, there's nothing wrong. But if there is, you're, you're already one step ahead. So I've gone into the drop in sessions. And they were like, Oh, we're going to refer you on for an actual speech and language sessions. And I was like, okay, great, because at the two year checkup, they were like, oh, you know, we should refer you and I was like, I'm one step ahead of you bitch! Yeah. Do you imagine like by the two year checkup, if I'm waiting another six months, he'll be two and a half. Whereas I've gone I've gone in a lot earlier. And just after two, he started receiving those speech and language sessions, which are crap, by the way, but at least afforded the opportunity for him to be referred on to a paediatrician now, at this point, he's about two and a half, almost three, I think. Timelines are a bit crazy, because this was just before the pandemic, he was about two and a half, I would say.

Erm so we were referred onto the paediatrician who at first wasn't worried. She wasn't worried at all. She was like, Look, I've seen the speech and language report. I've looked at the nursery reports, I've spoken to nursery I've done all these things. Not quite worried. We'll give it six months, boom, pandemic hit. And everything was online. So we've spoken to her six, the six months check in and she was like, Yeah, you know what, we'll, we'll, we'll give it another six months, you know, it's zoom, I can't really say much, because I haven't seen him in person. And so yeah, gave it another six months. And by then I think we're up to a year. So he was about three and a half by this point. And he had not really pandemic times obviously had not really seen anyone speach and language was non existent because we was on a waiting list. And it was, you know, just lock downs and just a terrible time. But I eventually managed to see the paediatrician in person. And yeah, I should say, so I saw I saw her twice. The first time, she wasn't worried. Second time on Zoom. She was like, you know, I got I got to see him in person. I can't say anything. But you should start looking at an EHCP. And I was like, Okay, what would that be for? So she couldn't say without seeing him that he's autistic, but she was like, You should I think you should try and, you know, start start start going down that route. So he actually saw him in person, I think it was about, there was less than an hour that she was in the room with him for as couple of other people in the room. And I didn't really I didn't actually realise that that was the assessment. But she had actually been doing assessments this whole time and gathering all the data from what I've said and what the nursery said and yeah, the reports. So then she was like, Okay, well, I'm diagnosing him as autistic. And I was like, Okay,

Lauren Fenton 13:26

wow, okay.

Rina Teslica 13:26

How did you feel like, validated or

Tinuke Awe 13:30

I guess, because she mentioned it kind of mentioned it previously. So I guess I kind of knew, but I didn't really know, I was on that journey. But I didn't know what the end result was gonna be. I hadn't really been around many autistic children by that point, and you see the signs, but you're just like, Okay, I just maybe need to hear it from a professional. So I felt fine. You know, I felt fine. I've been doing the research, you know, you kind of hyper focused on like, what is autism doing? And is it gonna affect him? Is it Is he gonna be okay? So yeah, I had that kind of initial, like, oh, this is fine. It's fine. I remember going that day, she said, Your son is still the same child that walked into this room, like, it's actually not changed anything, what we're going to do now, I'll just give him his formal diagnosis, and I'll send you often to some other people. So at the time is really grinding his teeth, you need to see a specialist dentist. You need to see a nutritionist because he just wasn't eating very well at all. And a few other people, but yeah, she was just like, yeah, like you're. Get back on your way. Okay, cool. I remember sitting in the car and speaking to like all the family, and just like, I don't even think breaking the news. But yeah, but like just he's got diagnosis now. And I remember saying to the nursery, Oh, yeah. By the way, he's got a diagnosis. Well, that was kind of that was quick. That was kind of smooth and I was like, Yeah, but I but we weren't expecting that, but okay, like, we'll take whatever help comes, you know from it now. And I must mention actually, we had the best nursery so before his diagnosis and obviously with the help of the paediatrician, she was quite helpful. She had mentioned that Ezekiel needs support in nursery. So before the even an EHCP, we had an IEP or we had something in place in our, in our borough to help him get one to one support. So he was already that was in place before the formal diagnosis. So this the nursery were already on it. They're brilliant. They're brill that is where my daughter goes now and I'm, I'm just like, What am I going to do? I stop having children and I can't send them here. That's so good.

Rina Teslica 15:41

That's such a good because we don't always hear that. school plays and nurseries, uh, you know, so this is really refreshing. And

Tinuke Awe 15:48

I know, I think that's part of the reason why we're here today. And and then I'm actually his story has just been so phenomenal because he we had such great support from the nursery. So yeah, he was already getting one to one support. And with the diagnosis he got, it was more full time. And yeah, we that was it. We've got our EHCP and he's it he was he started Primary School last September. That was a journey in itself, I guess. I think the last year has really shocked me. I never put limits on Ezekiel. Never. So I must mention, obviously, we've gone for the speech language because he was completely non verbal. We were, we were doing Makaton we were using, you know, some visual aids, not representative ones because they weren't any other time.

Lauren Fenton 16:41

We'll come back to that in a second. Yeah.

Tinuke Awe 16:44

Come back to that. But um, we're using all that kind of stuff. But actually, it wasn't until he started primary school that his words really started to come through. So he was exhibiting a lot of echolalia. Like this time last year, if you ask Ezekiel how are you? He'll say, Ezekiel, how are you? You couldn't have a conversation with him. He was just saying words and repeating that phrases from like TV and stuff, you know, typical echolalia. Now you ask him as he can, how are you? He'll go? I'm good. So I think, again, he might have he might have learned that might that might just be but I think he's getting the whole back and forth kind of conversation like since that in school, his language has really exploded. You can't kind of have a conversation with him just yet, but his language is getting better should I say? So he can say he wants to go to the toilet. And that's even a thing in itself. Ezekiel was still in nappies.

I was so nervous about sending him to school because it's a mainstream school. They're brilliant school again, I looked, I did my research, looked at the schools in the area and made sure that I felt comfortable sending him there and I got a good vibe, because there are some schools that you know, would with some autism DSP units. And I would ask questions, and the head teachers were looking at me like what you're talking about? Or they just, they just, it wasn't giving and I was like, There's no way I'm sending my child here. No, absolutely no way. So when I've got a good feeling from a really brilliant school, really small school kind of family kind of feel vibe to it. I've come in with the with my, my iPad and my 25 questions. So Head teacher have you had a child like is what was the progress like, you know, what's your bullying policy or all of the questions? And she's gone? Yep, yep, yep. Yep. Yep, she's answered everything perfectly. I'm like, You were waiting for me weren't you finally because at the end of the school year, we was we had a moment actually made the head teacher and we were just I shed a tear, she shed a tear, you're like, I can't believe this is the same way from last year. Like he's, he's actually really like being in school and getting that one to one support and just being around other children has really helped him because he's copying them, which is great because he's copy going to the toilet. He's copying play. He's playing with others. He's got friends, he's using his words. He's a totally different child. And I'm just grateful for that. But I know that's not everyone's kind of experience at school. I know that's not everyone's experience at mainstream school. But yeah, I'm just grateful touch with that. Everything's been going really well so far. My guy can count to 100. He can write his name! I'm like who are you you? Oh, my God.

Rina Teslica 19:46

Yeah, hitting them milestones. Like

Tinuke Awe 19:50

I'm really proud of him. And everyone's always like, you know, on Instagram because I share my journey quite a lot on Instagram. And I know we'll go into this but I share My journey with Ezekiel quite a lot and everyone's like, Oh, you know, he's so brilliant, he's so amazing, but you know what is, it's, it's good on you, as well as a parent as a mum, because you stuck in there and you, you kind of didn't let like the World Report, if you like, determine what you do with your son and how you treat him, you just went, you did it, and you're giving me so much hope. And that makes me feel like so blessed. Because in our community, like I say, in the black community, like autism is heavily stigmatised. There was even a viral video on the weekend someone sent me of the pastor praying for a child's you know, binding or casting out autism because they don't believe in it. It's scary stuff. And I was like, you know, what is I'm a Christian is one thing, praying for your child, you can pray for your child, you can pray that they will find favour, you can pray that, you know, like, whenever they get out into the world, like good things will happen to them and stuff like that you could whatever your that spiritual higher power being is, you can pray to that person, but then to start saying that finding and casting our autism like it doesn't exist, and don't bother going to the therapist because they don't know nothing. You've got to, you know, pray to God and fast and everything's gonna go away. That's scary. And that's the kind of community I'm from. So I think in me sharing. Look, autism is not a death sentence. It's not the end of the world. Do you know what I mean? Sharing the high sharing the low sharing kind of my journey, it's helping other people to see that actually. Maybe autism isn't as scary as people make it out to be. You know. And for me, that's important, because I remember when, two, three years ago, when I was looking for representation, and people that look like me who had autistic children that looked like my son, it was very few and far between. And that's quite scary, because you'll think I'm the only one or it doesn't, it doesn't apply to me. Because you type in autism. It's white children that come up, it's white men come up. If they don't look like me and my child at all. They don't it doesn't. It's only in the last, I'd say because of Tik Tok, and maybe because of the pandemic, that people are now more vocal about that. But before they're nothing

Lauren Fenton 22:20

and and did you because you already had mums and Tea which was your community of parents, that when you say you're looking for it, like obviously looking for more black autistic children, and I guess what did you go to that network as well? Did you find were there autistic kids within the Parenting Network or kids that were perhaps maybe without diagnosis, but we're going mums that were going through similar experience to you. How did that evolve? Kind of see.

Tinuke Awe 22:47

that's only because I fought through mums and tea, I've been able to build a network? Yeah, yeah. So I can I can, I'm in a position where I can be like, Oh, my God, I remember, when I was going through the EHCP process, there was a little bit of it that I just had a little bit of an issue with a little bit of a problem. Because the borough was being stupid, you know, you know, it's like, Wait, yeah. And I've put on my Instagram, does anyone know any educational psychologists or any people that work in x, y, and z, and the influx that I got, like, the way the community supported me and poured into me and gave me all of the information they had, or ex teachers or ex nursery workers with experience, like, Sure. I mean, I was like, I just put out a story. And I've got literally like, minimum 50 people coming back to me, that's only because I've got this huge platform. If I didn't have that, where would I begin to look? Where would I go? Who could I turn to? And so it's important that when I have these kind of issues, or if anything happens, and it's, you know, to do that, that can help someone else. I'm putting that out there. And I'm hoping that other people can connect to one another as well, because I it just, I can't just be this person,

Lauren Fenton 24:06

It's no all up you know, Down, to you.

Tinuke Awe 24:08

But I think it's important, because there are, there are now that I've built the network, I can see that there are so many mums out there that are trying to share that knowledge to bring people together. And it's looking a lot better than it did three, four years ago.

Lauren Fenton 24:25

Yeah. And it absolutely shouldn't be down to you just being on having that network. You know, how many people are moms and to the community now, but it's huge, right? But isn't there like now a specific branch that's relating to parenting kids with special needs?

Tinuke Awe 24:41

I'm definitely really passionate about that. So mums and tea overall, it will it started off because like you mentioned in the bio, I just wanted to find a network of parents that looked like me. And there's a reason for that. It's not saying that I can't go to any, you know, parent group and and relate, I have done that I do do that. But it's important to note that I'll give you an example. I live in a very what you call "urban area", heavily populated with a lot of black people but when I was going to let the baby baby, you know, stay in place, then these group sessions and stuff, I was the only like, young black man. And that's that was worrying to me, because I'm like, okay, I can I can talk to all of you, that's fine. We're all pretty much at the same age, and we can talk about stuff, but fundamentally embracing a black man. Hmm, there are certain conversations that you're just not going to be able to understand. And that's just fundamentally and you always seek people that look like you, right, that have similar backgrounds to you and can understand where you're coming from. So it's not that I felt othered but I thought like, where are my people kind of, you know,

Lauren Fenton 25:44

fundamentally about having a community that is, you know, of people that are coming from the same place as you like, I mean, that more in terms of like, you know, life experience and cultural background.

Tinuke Awe 26:16

cultural background, absolutely, you'll never understand what it's like to have a Nigerian mother saying to you give the baby water, when the wife has told you, dude, categorically do not keep the child water before you know for for six months, and then we come from it's fine. You give them one time they don't die. So it's like, what like, what's up? Like, who do I listen to? I'm confused. What do I do? Because I remember putting out Instagram and everyone's like, laughing. But a lot of people were like, Yeah, I get this, this, this is this is real life. But there are deeper issues, there are deeper issues, there are deeper things than just that. And I think it's important to have that sense of community. So that's why I set up mums and tea. Because I wanted to connect to people and connect with people as the first one out of my friends to have a baby. And I just I didn't want to be a loner and I wanted other people to connect to one another. That's how that started. But back to your question in terms of like, it's, it's important, because we've got that we had the face to face events. And we start building our community on like Instagram and Facebook physical. And during the pandemic, and lock downs, we went online. So we've got online community, we've got online platform, we've got different groups within that. And one of the subgroups is parents, for SEN. Parents. And a lot of the questions that go in there is like an upgraded version of a WhatsApp group chat, if that makes sense. Like, it doesn't feel as Oh my God, there's so many messages, you can put like topics and it's like really? Yeah, quite sophisticated. And people can just put in questions and people can answer based on the experiences. But I think it's just so important to have that space, because SEN parenting is just another level. And you add in being black. Yeah. So,

Tinuke Awe 26:17

and it's beautiful, what you've done, honestly, beautiful. I'm in awe of you. So yeah,

Tinuke Awe 26:49

what challenges and issues are coming up for others within that SEND community? If you are happy to talk about these, and you don't know how much is ableism, or the fact that we're in a society that has entrenched systemic racism, you know, what, what sort of challenges are you seeing? And to what extent are they the result of covert or overt racism?

Tinuke Awe 28:47

I think. I think some of the issues are twofold, probably three, or four or five fold if I really go into it, but you've got issues from within the community, and then you've got issues outside of the community that you've got to deal with, in the community stem from if you if you attend a church, or a place of religious practice, and you could potentially tell them all, you know, I feel like maybe my child is has got additional needs, or they've just got a diagnosis or anything. You could get one or two responses. That's, that's okay. That's fine, we'll pray or No, don't say that, that doesn't exist. You know, or just completely be ignored and not be supportive, be helped be shunned, you know, because your child has been rude in the service. They're trying to get on with things and they don't quite understand that you've got to make reasonable adjustments. It's, as I mentioned before, it's heavily stigmatised because a lot of people just don't understand it. They don't understand it. They might think it's the work of the devil or somebody in a village somewhere has done some black magic. And this is the result of, you know, what we're seeing, or they just don't know or don't understand it at all. And they fear it. You know, so there's a lot of fear in the community and a lot of, you know, misunderstanding. As I mentioned before, if you type in autism, you don't see many images of black people with autism, that automatically, one will just assume that's a Western condition, that's not something that affects us. That's not something that applies to us.

Rina Teslica 30:39

Or, like, we haven't been exposed to it as well, because if it's, if it's something that stigmatised, then that means it's hidden, and therefore, you're not exposed to it, and therefore you fear it. So it's like a long vicious circle,

Tinuke Awe 30:52

you know, what I'm saying the media and social media, they play a huge part in people's thinking, as well, we've got to remember. So if they're not seeing it, they don't believe it, then they fear it, because they don't know it. And then it just continues, right? Someone somewhere has to break that cycle. And I think I'm seeing a lot of parents now coming out and autistic people themselves coming out and saying, This is the real deal. This is what autism looks like. It can present differently. And all of these kinds of things. But so you've got that you've got that, you know, within the community. And it's not just church, it could be family members, too. I'll give you an example. And they've both changed. This is huge disclaimer, they have both changed in their thinking. Before anyone goes attacking my mum and my mother in law. But um, I even remember when I first told both my mom and my mother in law different occasions, both of their reactions made me quite upset. My mom was like, Oh, don't say that, God forbid, you know, automatically just rejecting it, you know, over my dead body. That's not, don't say that about my godson, that's, you know, abominations do that. No, say that about him. Don't proclaim that on his life. That's a big thing. Don't if you say it, that means it's true. So don't say it. And I was quite upset because that this is coming from someone who's quite, you're well educated, you literally just done a master's in public health. You've worked with people with additional needs, like for a long time? Why would you say this? Why Why? Why would you think this doesn't apply? What add it, please make it make sense? Is not even coming from someone that doesn't understand autism? Do you know what I mean? So she was find it very difficult at first to accept. And also, like my mother in law was no odd why me, you know, like, as if it's like a curse.

And with time, with educating, with loads of conversations and all that they both obviously change their way of thinking and how they view autism and stuff. But that's because they've been exposed to it. Now. If I didn't have a child with autism, I don't know if they would have ever got that kind of level of information. Do you know what I mean? So my, this is, and this is, this is why they say like Knowledge is power. So my mother in law works in a kschool. And she's very cognizant of this little boy, this little young boy who also has autism at dinner lady, she works in a school, and she's very cognizant of this young boy, who's autistic. Sure, like, give him little bits of bread if he's hungry, or little things. And she's always kind of like, her heart just goes out to him. Whenever he comes in the dinner line, he might not want certain foods, or she'll go and get something in the back. And she's like, that could be my that could be my God, that could be my grandson kind of thing. Whereas before, she might not have cared, she might not have known, should I just thought, well, maybe this kid is just acting up in the line. And why is this kid always got support? Like she, she, she would have just made assumptions, and she wouldn't have known. Do you know what I mean? And so it's important that we continue speaking out. And we continue having these conversations, because that's the only way we're going to spread the knowledge out there. And yeah, I'm so grateful for both of the mums journeys and how they've grown to like, learn and accept and just know more about autism and how it affects Ezekiel and how it can affect other people as well, because now they're actually looking at adults in their circles that could potentially be autistic, because that's another thing. It's not that it doesn't exist in our community. There's so many, like, when you look at like, because my mum was like, You know what, now I know what some of the signs are. There are certain people like maybe even at church, people who have grown up with, you know, that could be autistic. Maybe that explains their behaviour. You know, these are conversations I'm literally having with my mum.

Lauren Fenton 34:58

They're interesting, and you do just you just unless you're

Tinuke Awe 35:02

having these conversations you won't know. So yeah, that's that's one thing that you could come up against. I've heard people oh my gosh, I've heard people who have said their parents have gone gone to, you know, to come back home. When I say home, I mean, in the context of going like maybe, Nigeria or Ghana, wherever it may be. I've gone to pastors and ask them to for pray or pray like pray water, special water for them to pray over their child and bought them in certain things and do it. And I'm just like, whoa, whoa, whoa, whoa, whoa, is not.

Lauren Fenton 35:37

No

Tinuke Awe 35:38

It's not that deep, but because they don't know. And they fear it, they think it's something that needs to be prayed out. But so these are certain things that people are having to deal with just within their immediate kind of community, then you've got the certain health professionals. They're quick to label. And if you as a parent are being told, being shut down, oh, no, it's not autism. It's a you know, whatever, whatever. And then your child starts misbehaving, quote, unquote, in inverted commas, you know, they're stimming, or they're having a hard time or whatever, that's going to be misinterpreted as bad behaviour. Because guess what, they're already black. That's the reality. And when I say we, I need to speak to people who understand where I'm coming from, I believe that I am that I need to speak to people who understand where I'm coming from, because I need to have conversations with people who get that when I say I'm raising a black child, you know exactly what I mean. Right? The whole systemic things that go on that you actually just don't have control over. So you've got the health professionals, you've got things and people in the system who I can't even remember what the statistic is, but a black children are more likely to get a diagnosis but less likely to get the help and the support that they need, which is very, very scary. That's

Rina Teslica 37:16

That's insane if they're getting diagnosed more than

Tinuke Awe 37:19

Yeah. And those are you just think if that if they're more likely to get a diagnosis, these are the ones these are the ones that made it. Yeah. What about ones that didn't? What about ones that are yet to come? What about

Lauren Fenton 37:31

some of the stuff that you've Yeah, exactly already talked about?

Tinuke Awe 37:34

So that's hard. And then you think, so I've got a friend that works in public health. And she was telling me some stats, I love stats, although I can't remember them half of the time. But I love I'm, I'm definitely a stat woman, I love the stats. She was saying the amount of black men in the prison system and in the mental health system, you know, that actually have underlying speech or language issues, or have underlying autism, ADHD, whatever it may be, that are basically in the wrong place, because they didn't get support when they were in primary school is astonishing. Put it this way, a speech or language woman I went through a long time ago. She said, right, I'll put it this way. This is why you need to get help for your children as soon as you even visit inkling that there could be something there. Start of the year. There's Billy and there's Jamal. Billy, who's White, Jamal who's black. They are presenting with the same problems. By the end of the year, Billy would have got the help and support he needs, Jamal would have been excluded. When you say it like that, that's fucked! okay. Yeah. So these are the type of things you want to think about. You've got your family, you've got the community. You're coming in the schools and nurseries, I've had a great experience at nursery, that's not been everybody's case. That's everyone's story. Before you even get before you even think of EHCP we will get there. amount of trouble, the lack of knowledge, I know that this is actually just a wide, wider thing. But I think it's just that not even that the knowledge isn't accessible. But if you don't have communities, like my own, the amount of people that come onto my posts, one of my most favorited posts is like it's not a privilege, it's entitlement. Just things that you could like little things that you'll you can be potentially eligible for if your child has a different needs. So like DLA, that's a big one. A lot of people don't know you don't actually need a diagnosis for the for DLA. A lot of people don't know how to access that what to do. A lot of people are like waiting for speech and language or want to pay for speech or private speech or language because you wait on the NHS, you wait until you die. Oh, by the way, you can you can, you know, apply for DLA and get So DLA so like, they don't even have the knowledge to be able to help their children. And when it gets there, they're faced with so many barriers. You know. It's depressing.

Lauren Fenton 37:57

It is.

Rina Teslica 39:34

You know what makes it worse though. It's the fact that like, Lauren and I are white, but that doesn't necessarily mean that we've had an easy ride with anything disability related, let alone if we were black or, and English wasn't our first language, we would be fucked because how are you going to access support, speak to people who understand what you're going through, and get help to access things that your child is entitled to? That you have no clue about? It is Awful, awful, awful. Yeah.

Tinuke Awe 40:43

Yeah. It's, it's a lot. It's a lot. And I just think, you know, as a community, we are highly, highly, highly, highly underserved, highly undeserved. And I just think more needs to be done. Just point blank period, like more needs to be done at every level, to just educate people about, you know, what you're entitled to what additional needs means, what it looks like how, how it can affect you, and what you can do to help yourself. And if you if you're not a parent of children with additional needs and you know someone who potentially in your circle, and how you can be a support how you can be of help, and not just, you know, be an active bystander, and just so you know, I feel really sorry for you. But I'm grateful to be in a position where my friends are so understanding, my family is so super supportive, but not everybody gets that not everyone gets that, especially not in the black community.

Rina Teslica 41:52

But you are a ray of light at the end of the tunnel. So you should be incredibly proud of yourself that you've created the safe space, and are enabling black women to get together and help each other out. But it must be really exhausting.

Lauren Fenton 42:08

Yeah, I was gonna say you've, you're shining a light on on something. And I feel like the story that you described with the mother in law and mother, it's like, that's kind of in a microcosm of what you were describing initially around representation and just not seeing black autistic representation. Now, you know, you and Ezekiel, in that circle, shone a light and represented something that was so sweet, but you were saying about your mother in law, when she's looking after this autistic kid. That could be my grandchild, but you can't do it all. And it's amazing that you have this platform, and you're able to share your stories and bring people together. Like Rena said, Guess what, can people listening to this podcast do? What not that you should be the one having to tell people what to do. But just if we were throwing ideas around, how can people be actual, like allies in the actions that they do, rather than you say? Like just being an active bystander?

Tinuke Awe 43:05

No, absolutely. So I guess in terms of that, just like I said, it's just the representation that needs to be there. So I've written a few articles online for some, you know, some some publications, just to try and make sure that like, especially in the media, autism doesn't just look one way. And I'm I'm conscious that I'm not autistic. I'm a parent. So I'm advocating as a parent. It's important to listen to the autistic voices that are out there. And there are so many because my boy, he's a little boys, little five year old boy now, but he will one day grow and be an adult, and he'll be an autistic adult. So I think it's really important that we're listening to the actual voices and experiences of people who are artistic out there. That's first and foremost, because they've got a voice. But I think sharing the knowledge and information for me, that's first and foremost, because you don't know what you don't know. You don't know what you don't know. I do like once in a while I'll do like Instagram lives with experts and stuff and the amount of like feedback I get from that because people people will drop gems in there and it's like, oh my God, I didn't know that. I didn't know you're entitled to that didn't know you could do this. I didn't know it. So that information is like golden, especially when you're a parent to you know, a child with additional needs.

What else can people do out there? Keep the conversation going. Don't be afraid to call stuff out. Don't be afraid to bring stuff up. An article I wrote recently was how aunties and uncles and garden parents can Have the conversation if you think the child might be autistic, because I know parents can be really precious and really protective of their children, which they have every right to be, but because of the the issues I spoke about in the community, sometimes, actually, people are not willing to accept even thinking about that there might be something there because I think deep down, everyone knows, everyone knows, maybe we won't accept it or not everybody, everyone knows that their child might be a little bit different. If that's the case, everyone knows, right. But sometimes they just need a kick up the bum, or they might need maybe I don't want to call it confirmation from someone else. But someone else would be like, Hey, I've noticed this have you? Or, you know, it might not be my thing to say, but I just wanted to raise it anyway. You know, take it how you want, I'm not trying to offend you, I'm not trying to, you know, we need to get better at having these conversations. It can only come from people that you're really, really close to, it can't just come from a random person on the street, it's going to come from love. But we have to get better at having these conversations, because you could not, if fundamentally, and essentially, it's not about the parent, I know we do great jobs. We are you know, we're helping our children and whatever. But it's not about us and our feelings, it's about the child at the end of the day no matter what. So I was writng in that article that there are all of these heavy things in the community. But actually, you could be adding so much more to an autistic person's life. If you speak to their parents and their parents, like, you know what, actually, I have noticed that thank you for signposting me to this information, I'll look into it. And then they go in and don't get support only because you've just had that one conversation that they were scared to have it themselves. So yeah, spreading the information, having conversations, they sound really simple, but they can make the world of a difference.

Rina Teslica 46:59

Honestly, I feel you're on this so much because I come from Kosovo, it's like Eastern European country. And disability is like the biggest taboo still to this day. So my mother in law and mother had the exact same reaction as yours, exactly the same, it took years for them to like, go through the process of grief and like, except Lua. And I still think sometimes they struggle with like fully accepting her disabilities. They love her and cherish her and everything. But it's still that kind of

Rina Teslica 47:32

difficulty because it's like, a taboo thing. And like Kosovo, and Albania and Eastern Europeans having a disability, you don't see none of that shit anywhere. Because they, up until very recently, would hide these children away from society and just keep them locked up as if they didn't exist. And then once I started, like being being on Instagram more, and I, I've had loads of people reach out to me, like thank you, because actually my brother who's like an adult now was hidden away basically all of his life and it's awful. But talking about it and being much more open about things educates, then it's the acceptance, and it just like breaks the terrible cycle that our families, and our parents and their parents were brought up. So it's enriching people's lives by, you know, our wonderful children.

Tinuke Awe 48:26

Absolutely agree. Absolutely. I feel like when we've got these platforms, it's so important that we did, we're highlighting this because we obviously care enough to do to have a platform, if you didn't care a lot that other people don't care enough, maybe they might be too scared, or whatever it may be, but we care. And we've taken that big bold step. And so we have kind of a little bit of a duty to like, put that stuff out there and really tell the truth and really make that difference. And my thing is if you make a difference in one person's life, that's it. That's all. That's enough for me. That's literally that's enough for me, because I've done my job, you know, so we have to, we absolutely have to like scary, scary, scary stuff, people being locked away, literally.

Rina Teslica 49:17

And we'd have that same kind of convos, like with, like, with people not accepting that their kid like I have a friend, her daughter quite clearly is autistic, and she refuses to even think about the fact that her daughter is autistic and her. Her sister in law is a very good friend of mine. And she's reached out and was like, What do you think? I want to know what you think. And I was like, Yeah, I think she she's clearly showing signs to me of autism. I would highly suggest you get a diagnosis because you open up so many doors for her early intervention, all of the things that we know and she relayed this to and she was having none of it and it's and it's like I've done my job, I've been there, but it's then up to you to take it on board and some people are just not ready for it. And it's really disheartening and sad. But it's also like, it takes time. And I understand that completely

Lauren Fenton 50:13

that conversation may still have a very positive impact on that child. Just it just may not be now

Tinuke Awe 50:19

That's true. Talking about stuff like that, oh my god, you just reminded me of a lady that I spoke to recently. She said her brother's estate and she's Nigerian background like me. And she said that her parents when her brother was in school, the school was saying, Look, he's autistic. He's autistic, like, you know, we've got a got to do something. But he's good at maths. So what's the problem? He's good at maths, cool,

Lauren Fenton 50:51

like a lazy autistic trope of like the genius autistic.

Tinuke Awe 50:56

I've heard this too. So in primary school, he got a little bit of support. But when it got a secondary school, they're like, We don't want to label we don't want any, we don't want any help. It's okay. He's good at maths. He's good to go. He struggled in secondary school, somehow made it, got his grades, somehow, past got into college. He's in university at the moment, didn't get any support. But he's been trying to finish his degree for the past. I think she said four or five years. But uh, he doesn't get that extra help, because he obviously doesn't have an ehcp. There's only so much you know, he can do my god like guy, so he's trying to finish his university degree hasn't had any support. And I'm just thinking, wow. So the parents knew, didn't nothing allowed him to struggle. By the way he can't, he can't really write, but he's good at maths, but he can't really write. So he can't even get a scribe, to this boys. journaling.

Rina Teslica 52:01

And He must feel so disheartened, because you'd think that it's his fault that he can't when actually, it's not like, oh, that's so sad

Tinuke Awe 52:09

the saddest, sweetest story because obviously, good on him for like trying to get so far. But imagine how far he could be if his parents just said, Yeah, okay, let him get support and help that he needs it. And this is what I mean. It's not about us, but the fucking child like, I just think, oh my god, do you not care about your child like you care more about the label than care about your child. And furthermore, this label that you don't want to accept, actually unlocks a lot more support and help for you, the parent. Furthermore, us even though we've accepted the label, do you understand that we're stressed out because they're not even doing what they're supposed to? Do? You having the label accepting that you need to have that's only half? Because on the other side, you still got a fight? Yeah. What are you not gathering? It's not all fun and roses and Teletubbies. Why don't you do that? Because I just, I just, you know, I just, honestly, I don't mind stepping on people's necks. I have my Instagram lives. I like you know what? I'm tired of sugarcoating it for you lot. I don't care. You know, I need to really get your ish together. Because it's hard. You're already 10 steps behind, and you want to be even more. No please, that;s your own please. They'll come back in 10 years, or in that window when their about to start school. And this is just what I mean. Like when I say black children present later, it's because of this very thing it's because the parents don't want to accept the label. And then when it's I don't even want to say too late. But when it's like, you know, get to that point where like, they're about to get kicked out of school, maybe we should think about it, realise this, it's too late. You can be here. So yeah, like, I make it comical. But I'm also trying to really, like hone in on that point that you don't accept this label of autism, your child will be labelled something else, especially in the school system. So wear it like a badge of honour, accept it, accept your child, move on, your child is always going to be autistic. And that's that. And furthermore, to keep saying Furthermore, I'm ready to fight.

Lauren Fenton 54:33

I love it.

Tinuke Awe 54:35

I'm in a privileged position because I'm here now with all this experience, and I've built this network. But if if I could speak to me two, three years ago, I'd be like, Yeah, this is great. I love this for you. But um, yeah, I just think if you if you just if you don't accept that label, it's gonna it's gonna come back and bite you in the bum. You love your child. And if your child didn't have that, that additional need or that disability, they wouldn't be who they are. You can't wish it away, you can't pray away, you can't wish it away. This is the situation that it is. The quicker you accept it, the quicker you can get help. Early Intervention, all of these things like, people are like, Oh my God, how do you do early intervention? Wasn't just its early intervention wasn't just, it wasn't by design. Early Intervention we got in there quick. It's not now that he's 10, 11, 12 Trying to get to school, and he's had a ship time in primary school. And now you know, we're thinking, oh, you know, for secondary school may be thinking of it. No, why do that your child? But yeah,

Lauren Fenton 55:40

just to kind of pivot slightly, you're talking about early intervention. Tell us about because you are force. I love that you looking forward and seeing yourself in two years time... And would you also have imagined that you'd have seen an issue that started your business representation with Ez? And just hell make it happen? Can you tell us about learning with errors and what precipitated that?

Tinuke Awe 56:03

Learning with Ez is my baby so I started it actually, before I knew that Ez was autistic and artistic friendly range only came out a couple of months ago. But essentially, because I was kind of, I'm that mum, right? Um, let me just say, Look, I'm Nigerian, I'm the firstborn Nigerian girl. In a Nigerian household, the firstborn gets it, you're a girl forget it, the pressure is on. Me education has been drummed into my head, like I love anything to do with education. I think reading books, that's a bit of me. So I'm, I'm definitely a self proclaimed nerd. And I've just come from that. My mum was a teacher, and I'm not I'm Nigerian. We love education, we love just in just anything, education, bring it. So I studied psychology. I've just always been really interested in books, child development, that kind of thing. So when I had my son, I naturally wanted to like read him loads of books, and do like educational stuff with him at home. And I was trying to just like, do simple things like, find a poster of body parts in a local pound shop, you know, and remember, low and behold all of the illustrations were white. I wasn't really struggling for books, but in terms of like, actual resources to support with education, I was like, This is frustrating. I'm literally having to look for stuff in America and pay for shipping. And that's long. I'm not trying to do that. And if I'm frustrated, then somebody else out there will be also feeling what I'm feeling. So that's how learning when I was born, because I wanted my son, not just my son, but other people that look like my son, to see themselves represented in their learning, but also for other children to see what the world looks like around them. Because if I'm buying, if I'm looking for things in the shop, and all the characters are white, that means that potentially white parents are buying white things for their kids as well. And that's not great either.

Tinuke Awe 58:11

No,

Tinuke Awe 58:11

It's not what the world looks like. It's just not representative.

Rina Teslica 58:17

Amen.

Tinuke Awe 58:18

Yeah. So I started learning with Ez because I actually just, I fundamentally wanted that to change. I hate injustice. I hate things that just don't sit right with me. And I really wanted to change it so yeah, started off with some flashcards. Initially, it was number flashcards, alphabet flashcards. Now, we've got whole range, we've got emotion flash cards, we've got our autism friendly range, which consists of toilet training cards, and the daily routine cards as well. So learning with Ez started because I was really looking for visual aids, to support with his communication needs, so all of the like PECs and like the things on Amazon, they were like stickmen or they want to have white children and I was like, my son's really visual if he seen white children he might not know that I'm trying to apply this to him where I noticed when I'm reading books that look like him or I've got things that you know just represent him, he pays attention. So he's clearly a very visual person he can't communicate that with me but I'm looking at his behaviours and looking at what he's paying attention to and I can see he's definitely way more engaged when the characters look them so I was like I'm missing a trick here. Let's let's literally build a brand based off of him and his friends. So actually the full name of learning with Ez is learning with Ez and friends because it's actually based off of like all the characters or his actual friends.

Lauren Fenton 59:49

So cute. How's it going? How's it going learning with Ez we'll obviously, like link all of this in the show notes for people to visit your website and shop and all the rest of it. But how's it?

Tinuke Awe 1:00:02

Ya know, it's going really well. I'm super, super excited. So this time last year, I was actually doing a fundraiser, a Kickstarter campaign because I was trying to raise the funds to do this, this very project, the autism friendly cards, but I didn't quite meet my target, which was a bummer. But I wasn't going to let like anything like that stop me. So over the past year, I've been busy working behind the scenes and like doing like various courses applying for like pitch competitions, doing loads of things in the background, and I was able to launch those cards couple of months ago, and I'm super, I'm just really happy because I actually got a message, I screenshotted it. I'm just going to read it out because I'm so proud. So this woman goes, Hi Tinuke. I just wanted to let you know that with the help of your cards, we finally been able to potty train our four year old, I had resigned myself to the fact that his autism would mean that potty training would continue to be difficult, and that he just wouldn't understand it. But after showing him the cards every day, for about two weeks, we finally took the nappy off, and he picked it up in the space of a few days.

Rina Teslica 1:01:16

Wow, that's, that's amazing. You should be so proud of yourself for being able to facilitate that which is such which is like, for me, it's like a goal, like a goal goal for Lua to be potty trained. So for you and your incredible ideas to help a special needs child get there is just

Lauren Fenton 1:01:36

we applaud you. That's amazing. It's it's really, really, really cool. And like you said before that you you just want to help one person. It sounds like you're helping fucking shitloads of people. And we haven't even talked about 'Five Times More', which for people who don't know, is a huge, huge campaign that you've spearheaded.

Tinuke Awe 1:01:59

Just having a bit of a moment.

Lauren Fenton 1:02:02

Take your moment, take your moment.

Rina Teslica 1:02:05

Enjoy that moment. You should be so proud of yourself honestly.

Tinuke Awe 1:02:11

I now how hard it is. I try to train as a kid for years and he just wasn't ready and I just thought oh, we're not gonna force him. We're not gonna force him if he's not ready. I'm sending him to school with nappies. It's fine. You know, if I have to come in every time then I just live around the corner I'll do it

Rina Teslica 1:02:31

it's really emotional

Tinuke Awe 1:02:36

to be able to use these cards to help him and then help others means the world I can't put a price on it. I can't I cannot put a price on the fact that my experience and been able to push through someone else's child now is potty trained. Like I can't even get my head around it. I know how many times I would go to bed crying thinking oh my god

Rina Teslica 1:03:14

oh, yeah, it's really emotional. I think I'm also crying because I'm so fucking envious of her too. So

Lauren Fenton 1:03:24

guys a massive thing

Tinuke Awe 1:03:30

if I never sell another learning with this thing again, that's my job.

Lauren Fenton 1:03:38

You are doing so much and it's so it's all so close to home for you. You know your job is your life and how do you create boundaries and how do you like cope with the fact that you know all of these things are emotionally going to take so much out of you? How'd you do that Tinuke?

Tinuke Awe 1:03:59

I didn't used to do it very well. I'll tell you that for free. I didn't I didn't I had no boundaries. I cared way too much about myself into the ground loads of times. Neglected my family just did the most. I didn't know how to regulate I didn't know how to say no before was hard. It was hard until I got to a point where I was like, You know what I can't I can't juggle this juggle that juggle, work juggle additional an additional needs kid I couldn't. I couldn't do it. And I'm a recovering people pleaser so that was really hard. If anyone wanted anything I just been like, Yeah, sure. Why not? You know, couldn't I just found it so hard to say no, I found it so hard to put boundaries in place even though I knew if I said yes, I'd struggle. And I think after Ezekiel's diagnosis I I actually fell into a deep depression not because of the diagnosis Well, partly because of the diagnosis. But partly because at that point in time, I was working full time must my daughter hadn't had, she didn't have a nursery place at the time. So I was working from home with a one year old. Having to pause in like, various times of the day a couple of times a week to take Ezekiel to therapies, speech or language, play, whatever it may be patient health, you know, you name it, we were doing it all and coming back and having to finish off work, and having to do five times more stuff, and having to think about learning with ourselves and having to cook dinner, and be everything to everyone. And I woke up one day, and I said, I can't do this. Something has to give, otherwise, I'm gonna go, my mental health is just gonna go in the bin in the gutter. It just wasn't, I had to obviously discuss with my husband, I said, this is not an easy decision to make, because obviously finances and we've got two kids, and this is hard. But he was supportive. And we somehow managed to work it out like, but I quit my job.

I quit my job because I couldn't. I could not do didn't want to let go five times more because it's so impactful. We're doing so much in that space. Especially at the time as well. It was just a lot going on. Um, I believe so much in learning with Ez there's too, right, you know, if I didn't keep going. Right. But obviously, as a small business owner, and Five X more is a CIC, and we don't we actually rely very heavily on donations, it's been hard to find the Instagram behind it all this, I'll just be completely honest, it's, it's been tough, but it's been the right decision for my family. Because in that, me saying, You know what, no, I can't do this, I've been able to create those boundaries, I've been able to be more flexible with working for myself. So that means I'm able to be more on hand with my family. I utilise the functions on my phone, you know, the do not disturb the work mode, all of that kind of stuff. I've learned how to just say no, if it doesn't suit me, or if I need to reschedule hence why I'm not offended.

Lauren Fenton 1:08:18

You know, I'm just really honest, honoured that you've really been working on saying no, and you've still agreed to come on our podcast, that means a lot to us, because you have got so much going on. And you're damn right. You have to create those boundaries and prioritise what you really want to invest your time in. So yeah, yeah, thank you again for the time.

Tinuke Awe 1:08:41

Oh, my God, thank you for inviting me. Like, I was sheepishly after, like, what happened the last time you guys were on the call, and I had completely forgotten. I was just saying that I was doing. I got to listen, I need to tell myself off. I was sitting there, you message me? And I was like, Oh, my God. And we've been trying to reschedule for the longest time and I've come back to your email because it was unread in my my inbox and unread means, answer it at some point, right. And I've come back sheepishly, I was like, Are you still interested in me? To come on? And you said, Yes. I think it'll be good. Thank you, guys. Thanks for understanding. Now

Lauren Fenton 1:09:24

we get it. We get this. I mean, good. You know, I similar to you made a decision a few years ago after trying to juggle like crazy to walk away from the corporate job that I was doing, because it was just, it just wasn't working for me and my family. It just wasn't working. And so you're very lucky to have a situation where you can be supported and make those decisions. But yeah, everyone's got to do what's right for them and their family. They can. Yeah,

Tinuke Awe 1:09:53

absolutely. So in terms of like, yeah, how do I do it? Oh, and people always ask how do you juggle it. How'd you do it? I'm like, I don't have an answer. Yeah, when you have an answer, let me know. But for now, we're just roughing it out.

Lauren Fenton 1:10:10

Get through the summer holidays, just get holidays.

Tinuke Awe 1:10:14

Let me get through the next three weeks and I'll be good.

Lauren Fenton 1:10:20

Wow, it's been amazing to talk to a, we are so pleased that you agreed to come on and have been so open and honest with us about your experiences and tell us about oh my god, all this stuff that you've got going on and how you're touching other people's lives. It's just absolutely brilliant. And we will signpost everything in our show notes so people can get involved help go on and see what learning with us is all about and wish you so much success with it just so that we can hear the 1000s of versions of that message that you read out how many people you can help,

Rina Teslica 1:10:57

but don't read anymore because then I'll start crying again and again. And again. I can't even go

Tinuke Awe 1:11:01

I don't have no energy to come starving so I have no more messages. It's okay like,

Rina Teslica 1:11:10

oh, it's been an absolute pleasure. Yeah, absolutely. I think I could talk to you for like hours.

Lauren Fenton 1:11:16

Can we do it in a cocktail bar next time or something can we do over drinks? Yes.

Tinuke Awe 1:11:20

Absolutely. Absolutely. Thank you so much for having me and for being so patient and waiting. I appreciate you guys so much. Honestly, it's been a great conversation. You too are brilliant love what you're doing love that have been able to keep it real as well.

Lauren Fenton 1:11:38

Right but before you go as you know on the podcast we at the end always ask our guests for what their fucking normal is so to make a what is your fucking normal?

Tinuke Awe 1:11:51

So my fucking normal is watching buses with my son.

Lauren Fenton 1:11:59

Or just like all buses.

Tinuke Awe 1:12:00

On YouTube, we have this thing right? His complete focus right now his his what he loves is buses. He's always been into. He's been out but now he's watching them on YouTube. And he will watch the whole journeys of people on buses. He'll make the noises like when you know whether those days ago. He can mimic word for word. Like pretty much the majority of buses he's either watched on YouTube or been on he knows where they go 188 to Russell Square like he that's my normal. And when I'm trying to get him to calm down, I'll just stop naming local buses and I'll go so if he's like in a mood or like I'll be like Ezekiel 321 to North Greenwich got my normal that's his that's my fucking normal as his that's all normal. But yeah, that's, that's it.

Rina Teslica 1:13:09

I love that. Oh my God, that's the cutest thing I've ever.

Tinuke Awe 1:13:14

I think I've become a bit of a bus fanatic, because

Lauren Fenton 1:13:18

we know at all now, you know. Thank you so much Tinuke. You've been amazing.

Rina Teslica 1:13:25

Thank you.

Lauren Fenton 1:13:30

Thank you so much for listening to the fucking normal podcast. We love making this podcast. Yes, we do. We are part of a much bigger team, almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences.

Rina Teslica 1:13:51

So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at fucking normal podcast.com That's f k ing normal podcast.com you can join us on Facebook and on Instagram at fucking normal underscore podcast. That's f k ing normal underscore podcast. You can get all the links and more information in show notes below.

Lauren Fenton 1:14:15

So thanks so much for listening all the way to the end. We'll see you next time.

Transcribed by https://otter.ai

Transcribed by https://otter.ai

Epiosde 13: Coping through connection and community with Melanie Dimmitt

~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Rina Teslica  00:26

This is the Fucking Normal podcast. I'm your host, Rina. 

Lauren Fenton  00:30

I'm Lauren. 

Rina Teslica  00:31

And on today's episode we'll be talking about a subject that is the Fucking Normals' raison d'etre- coping through connecting with others and building community. It was back in episode 1  of the podcast that we talked about Loneliness, and why finding others that get it- is so important for us. It really is one of the best things you can do when you start down this less-typical parenting path. It doesn't have to be face to face or a proactive and specific diagnosis related-group, which can seem daunting in his early days, but even something more passive like a book, film or a podcast. When you are struggling, there is such comfort in realising you're not alone. Hopefully those listening are finding out that there are so many cool families out there similar to you, people that you would hang out with anyway that are doing disability their own way that can share their war stories, their moments of joy, their wisdom and collective parenting knowledge to help you along the way.

Lauren Fenton  01:21

And our guest today is Australian author and journalist Melanie Dimmit, who has done so much to build communities in the Disabled Parenting space. Mel, who is mum to seven year old Arlo, who has cerebral palsy, and Odie, who is five, and, as Mel puts it medically boring (I love that). When Arlo was diagnosed Mel coped by connecting with others in a big way, using her journalistic skills to interview and write about others who had trodden this path. And so her debut book was born- Special- the antidote to the obsessions that come with a child's disability. Candid, validating, and really fucking useful, it is something I'd recommend to any parent to a disabled child, particularly at the beginning of their journey. Since Special, Mel has continued to do so much in this space, and amongst her achievements are an award-winning podcast, helping parents to navigate the Australian disability benefit system, NDIS. And last year, as Arlo had recently started tube feeding, what did she do? She went and launched a magazine, The Blend- an annual lifestyle magazine, designed to inform and inspire the tube feeding community. Absolutely amazing. So, so happy to have you on the podcast, Mel. Hello, welcome.

Melanie Dimmitt  02:42

Thank you both so much for having me. I feel right at home being on a podcast that has 'Fuck' in the title- I'm just giving you a warm embrace- you're my people.

Rina Teslica  02:55

I think I knew it, like, in the first paragraph or so of your book. And I was like, yes. She is my type of person. 

Melanie Dimmitt  03:03

Pretty early on first page, I'm sure. And then on many pages within again and again.

Lauren Fenton 03.06

If you can't..I mean, you know, each to their own but if you can't swear and laugh and rant, then you know, what's the point? You're making Disabled Parenting way harder than it needs to be.  Can you start Mel, and maybe I'll just mentioned now that Mel and I actually know each other through a mutual friend from the days when Mel lived in London. So it's like amazing to be  connecting again after all of this time. And I'd really like to hear just how you are doing now and to know bit more about Arlo and your family set up and what are the things like?

Melanie Dimmitt  03:45

Yes, Lauren, so awesome to reconnect, like you say.. We knew each other- It feels like a million years ago- through a mutual friend who was my housemate. Hi, Vics, if you're listening, I really miss you. We're good. Arlo is still up, so we could be better. And I'm sorry, if you hear noise in the background. It's night over here. We're good. Everyone's relatively healthy. We're very busy. My partner Ro and I both work pretty much full time. He's in the media too, he's a newspaper editor- and I write and we both do it from home, work remotely most of the time. So we're here, with our kids, pretty much all the time, with zero boundaries, and it's really fucking stressful. But amazingly, amazingly flexible. You know, we got a call from our school today saying he's not quite right. And we were there within you know, 10 minutes so it's beautifully flexible. I think it suits our lifestyle really well. We can drop everything and head into hospital or do whatever we need to do. I'm making it sound like our life is a disaster. We've had a pretty good run of no hospital for a while now. But yeah, I'd say we're having a good patch. Arlo is loving school down. He's in the local public mainstream school, in year one. This year, he's got full time one on one aid with him the whole time, which is wonderful. He adores school, he's always been a really, you know, social little guy. And his sister Odie joined him this year. So it is so cool to drop them off, you know- we get to go into the rock star amazing disabled parking area now with our van that we just got that has this incredible ramp that just automatically slides out like it's red carpet rolls out and Arlo comes down, and Odie insists on walking down the ramp as well. And they think it's so cool. And it's just you know, now that I thin that they're both at school, I really feel like we're in a bit of a- I don't want to say easier because, you know, I'll jinx it. Yeah, it's got different challenges but it's definitely simplified things- them being in the same place at the same time, most days, and we don't have sickness. So you know, things are good. I'd like a bit more calm. We definitely work too much and we need more holidays and more date nights. We have zero at the moment, but generally, we're pretty happy. We're laughing every day, which is good. 

Rina Teslica  06:05

Oh, lovely. 

Lauren Fenton  06:06

That's beautiful. And not to kind of jump from that beautiful positive image of now but can we now rewind to back to how things were at the very start and how you, Arlo's diagnosis and how you coped with that. And I guess how you decided to go and write Special? I have to say, I'm so impressed that you're kind of, what appears to be, way of coping with things is to use your tools to go and create something. It's amazing, but tell us at the start. 

Melanie Dimmitt  06:43

Yeah, so look, back when Arlo was diagnosed with cerebral palsy at six months, if you'd have told me what my life would look like now- that I'd be talking about ramps coming out of cars and wheelchairs... So Arlo has got quite profound cerebral palsy, he's level five on the jmfc. I always say this wrong, but that scale. So physically, he's quite impacted. So he needs to be in a wheelchair all the time, he can take steps in his walker, which is really cool when he's in the mood, which is not always. He's also non- speaking. So he communicates a hell of a lot through his eyes expressions, the gorgeous sounds he makes and he also uses this incredible AAC device, where he's talking with his pupils, which just blows my mind- that if you told me any of that, back when he was diagnosed, at six months old, I would have died. I wouldn't have coped with it. When we got his diagnosis. I did not handle that information very well. I didn't know what cerebral palsy was. We were warned he had a really shitty birth. My pregnancy was pretty normal. I think we were four days past our due date and I could feel that he wasn't moving around as much and I'm guessing it's the same there. They say, you know, if your baby feels weird go into the hospital. So we did and they checked him out and they said oh no, he looks alright- go home and we were driving back and I was like, no, no, it's definitely feels wrong. So we wenr back again. They kept me in overnight, kept checking on him and he seemed okay, but they said look, we'll induce you in the morning. And they that next morning, they have me hooked up to the foetal heart monitor- we were just about to be induced. And out of nowhere his heart rate just dropped dramatically. And then it was button pressed, the emergency Csection called for, me under, within what it felt like 10 seconds and me just watching my partner Ro's face sort of disappeared down the hall as I was being taken off to theatre and being put under. So it was a very dramatic entrance. And I woke up in the NICU, they placed gorgeous Arlo on my shoulder. He looked straight into my eyes, and it was just love. And I was like, this is fine. He's alive. We're all good. He was in NICU for a week, they did a scan of his brain and it showed there was bilateral damage to the motor section of his brain. And they said look, we'll just have to wait and see what happens. They said worst case scenario, it'll be cerebral palsy and I just let that slide right over me. I was like, I'm not having to buy that, that's not going to be us, he's alive. We're fine. It will all be fine because everything is always fine. I could not cope or even think about cerebral palsy, whatever that was, as being you know ,what our life is going to be. And as the months went by, gorgeous Arlo, so smiley, so engaged, so wise- did not hit hit a single milestone, so he never rolled over, never sat up, couldn't hold his head up. He still can't do those things. So at six months, we were given the diagnosis and I thought the world was over. I did not see any way that my son could be happy or having a meaningful life. I hate talking about this now because I'm like, what an idiot, that girl. But at the time I thought this was it and I wasn't accepting it and I was bargaining with the universe and being like, this is okay as long as he can walk and talk and no one can tell that he's got a disability. I'm guessing you guys might have felt something...

Rina Teslica  10:03

Exactly the same. It was hell on earth. And then I also feel terrible for that girl, seven years previously, just, yeah, it hits, you hit the right spots. And it's just it's like, it's really fucking weird, but it's like being seen. And it's also so valid these like, Fuck man, I was an absolute bitch. But it's totally normal to feel that way. So thank you. 

Lauren Fenton  10:32

If you haven't had exposure to disability, and, you know, I guess we're all kind of a similar age that also in our upbringing, there's probably a lot less kind of visible people with disabilities on TV or anywhere. It just, it's just a different world that you don't understand. And you know, the kind of views I didn't think I had overt, kind of, like ablest views, but I definitely had those internalised ablest views, just because of the way that I'd been socialised. And you just.. Yeah, I think it's, it's good to remember that in a way though because I think, when you're up against other people now, or you know, you get the looks or whatever, it's good to kind of remind yourself that it's only through educating yourself and being immersed and and your child educating you. And, you know, waking up to the fact that this is not the end of the world and that every child is just as valuable regardless of ability.

Melanie Dimmitt  11:36

Yeah, that's it. And that's what I love. I love that Arlo is in mainstream. And I love that he has all these friends. And I love that he has a sister because I just, I already see how these kids get it. And I wish that I'd had more awareness of disability, I wish they'd been disabled kids in my class, I wish they'd been at uni, I wish they'd be more at my workplaces, because then I do not think I would have freaked out the way I did, and thought it was the end of the world. I'd just sort of seen that it's another way of being on this earth. And you know, in a lot of ways, it's a lot more interesting. And you get all the fields at both ends of the spectrum. And I certainly think we're getting a much richer life as a result. But yeah, at the time, I couldn't accept it. I was so sad. I was so frightened, I would have given anything for a glimpse at the future. All I wanted was to know that he'd be walking and talking and be fine, and that this wasn't going to be the nightmare that I thought it was, the thing that came up when you Googled quadriplegic cerebral palsy. And that's when I thought, look, and it's something. I really wanted quotes. I love quotes that make things you know, like inspirational quotes that matter. And you're thinking that's, I just need words, I need words, like, where am I going to get those from? And I just thought, well, look, I'm not the only person on the planet doing this. I don't want to go to those, you know, disability or special needs parents support groups, I'm not ready to, you know, admit that I am a parent who should be one of those groups. I am a writer, I'm a journalist, I love talking to people interviewing people, I'll say I'm writing a book, I'll reach out to people I find in the real world or on Instagram, or wherever and interview them and say I'm writing this book, and I had no real intention of actually writing a book- it's really just an excuse to talk to parents and say, Help me, how did you get through these early months? Please tell me this isn't what I think it is. Please tell me your child is okay. Please tell me that there's, you know, any chance of happiness in my future, and oh, my gosh, the session I started talking to these parents, I felt so good. I just felt light, I felt understood. I can feel it. I have it with you guys, like we don't know each other very well but there's this instant rapport that you have with parents who are raising kids with disabilities. And as soon as I started having these conversations, phone, on Skype at the time, it was before zoom. I was just like, there's something here. There's something about this connection, this community and people were saying, you know, they're in vastly different scenarios, and different countries with different kids with all kinds of things going on different diagnoses, some of them without diagnosis. But the same things were coming up. And I was like, these are themes. These are chapters, and a book started forming and post-its it started going up on my walls. And I was like, There's something here. And it was so amazing to have a project to sort of disappear into as well.

Lauren Fenton  14:28

Did you find it easier at the time to talk to parents who had a different diagnosis, or were you kind of keen to latch on to those that had that same diagnosis?

Melanie Dimmitt  14:38

Well, it's an interesting question- both. I remember talking to a mum with a kid who had a similar diagnosis to Arlo. And that was harder. You're right. And I remember being so disappointed that she said that her son wasn't walking. And I'd be nervous to sort of ask like, so what's happening? What are they doing? But then I kind of got past that. It took me a while but when I started writing Special, I wasn't ready to hear that my son, I really wasn't there, like I probably shouldn't have written it as early as I did. I was very much writing from my wounds, not my scars. But I, I couldn't write that book now. I can't look at it. It's the parents at the start of this but I think it needs to be that way. So it does something. So that helps parents at the start of this. It's all well and good me saying everything's great now. But you know, how does that help someone at the start? When we know it's just, there's nothing worse than what you're going through at the start of this. When you think your child isn't going to have a happy life? I don't think there's anything worse than grappling with that. So you're right, I did find it easier to chat with the parents who had kids with completely different things going on but

Lauren Fenton  15:45

I think we found that as well. Suddenly at the start, I completely avoided that. So Bea has 18 Q deletion syndrome. I just did not go to any of the groups online. Any of the information I looked at the case studies were given, I said nope, we were we were not one of those case studies. We will be our own case study. I think it's just- you don't want to define a set of expectations and, you know, in either direction for your child. And yeah, it's I found it much easier to to be away from something that had a direct comparison. I know Rina was very different in her approach.

Rina Teslica  16:22

Yeah, I was on that Instagram, like Noonan syndrome, Noonan syndrome UK, Noonan syndrome America, trying to find as many kids with Noonan syndrome as I could. But the thing with our diagnosis is Lua has the rarest form of Noonan syndrome. So it's incomparable. All these kids with the standard Noonan syndrome are so different, but it just did give me hope, like, Oh, it's okay. She can, she will be able to walk, eventually, she might be able to talk. And so I had, I don't know if it was a good thing or a bad thing. But I did have expectations. Well, you know, if this kid in America has got Noonan syndrome is doing this, then you should also be able to do this. And it did take me quite a while to be like what actually, you're a rarer form of Noonan syndrome, and it's gonna take you time or a different pathway, or you might not even get there. But in the beginning, it was very much like I needed to see parents living a normal life with a child who has Noonan syndrome. So yes.

Melanie Dimmitt  17:27

Cheers to that. And thank goodness for Instagram, is all I can say. I do not know how parents did this before that, and it's interesting you're talking about it again. I haven't thought about this in ages but at the start, I was like we're gonna be mild, mild CP, mild CP and I was looking at loads of mild things. I'm like, this is okay, we can manage this. But now I almost feel that parents who do have kids with milder things, struggle more, because it's almost like when you're closer to the typical, you keep trying to get there, you keep trying try and try to go by the milestones. And I'm like, we just had to chuck out the book, like Arlo has just led the way. And we've just, you know, followed his lead and just, you know, he's shown us who is going to be and what he's going to do or whatever, like we had just have zero expectation, which is actually it was lovely as well, when we had our daughter, just not worrying about milestones or anything. Like it was really nice that he set us up for parenthood like that, which I think is just a good way to approach parenthood anyway, without all these horrible milestones and expectations that we automatically have.

Rina Teslica  18:24

 And the comparison. 

Melanie Dimmitt  18:26

Oh, yeah, comparison. Bloody hell.

Lauren Fenton  18:28

So coming back to connecting then and the people that you connected with, was there a moment when you, because obviously you were really dealing with your own Denial? Can I say denial all the time? 

Melanie Dimmitt  18:41

I love denial. 

Lauren Fenton  18:42

Yeah, denial, I was the same. So dealing with your denial in those early days and then reaching out to people, obviously, things were looking to be brighter than you'd perhaps imagined. Was there a particular interview or a particular moment where you went, 'Aha', like you sort of flipped into that acceptance zone, if you like?

Melanie Dimmitt  19:03

Yeah, all of them did that a little bit. For me, there was a couple that really stood out. One of them was with this incredible woman who called Ondine Sherman, who's an author, who wrote a memoir about her experience raising her twin boys. It's called the Miracle of Love. So I'd read her memoir, and that really helped me. Her boys have a genetic thing, but really similar needs to Arlo. And when I interviewed her, you know, she had two I think, 11 year old boys at the time, both in wheelchairs, both really profound, you know, disabilities. And she said to me, I'm living my worst nightmare, and I've never been happier. And when she said that, I was like...Hold on, I'm even getting goosebumps now. And I put that in the book because I was just like, I was preparing to interview her and I was like, I hope this isn't my future. I don't even know how she's coping right now. And I think when she wrote her memoir as well, it was hopeful but there was definitely ,no she wrote wrote it early. But yeah, when she said that, and I could, I could see I could see how happy she was. She was like radiating through the Skype. And I was like, wow. There's hope here. And you know, she she was amazing for that. And another interview that really helped me was with Debbie Elnaton, who is the inventor of the Upsee, which is, I don't know if you guys have seen it, It's this contraption where you can strap your kids on to yourself and walk around with them. So your child gets the experience of walking. And she has a son with CP, quite a bit older. And she sort of said to me, you know, people, and at the time, I was obsessed with Arlo walking, I was just like, he just has to walk no matter what it will keep working on it. We'll be turning him around all day, every day. And she was like, when you talk to disabled adults, they don't actually care about whether they're walking or in a wheelchair or whatever. What they care about is having a social life is, having friends, is having fun. Like what kind of a childhood is Arlo going to have if you just have him doing physio exercises all day. What kind of a childhood is his sister going to have if she's just being carted around to therapies or watching her brother get propped up against the couch. You know, therapies are important. But Debbie made me realise it's much more important that Arlo has a sense of humour, and is nice, especially as someone who's going to need help his whole life. No one's gonna want to help him if he's an asshole, we need to develop social skills, we need to develop a massive social circle and same with us, you know, we need to get out and, and that really flipped my thinking. And we're lucky that Arlo is very likeable, very popular. He does have loads of friends, but we're really conscious of like, making sure we nurture those friendships have the playdates, which I'm not the hugest fan of, but we do all the, you know, the parties and the playdates and things like that, because he loves it. And I now think that that's more important than his little body that was never meant to walk by itself walking.

Lauren Fenton  21:49

And do you find, I mean, I'm not surprised that he's sociable and gregarious and everyone loves him, because I'm sure you know, the apple doesn't fall too far. ..And cheesy. But no, actually on that on those lines. Obviously, it was your craft, your trade was, you know, journalism and writing, but reaching out to people, connecting- Is that something that kind of you've always been good at and came naturally to you? Because I think, you know, it's all very well us three as quite sociable, I'm assuming you're quite sociable Mel, from our past lives, But it's all very well for us if we are naturally able to do that. But I know there must be parents that don't have that kind of, I guess, social skills or nervous about reaching out to people. And it's, I guess, what would be your advice to people who are perhaps less or more reluctant to want to connect and join communities.

Melanie Dimmitt  22:46

That's what your podcast is for. Look, at the start of this, I wasn't ready to talk to anyone, not the groups, not interviewing people. But I just listened to stuff and I read stuff. I think podcasts are so much easier to get into than books, especially at the start when you're so freaking tired, and you can't focus on words, let alone read a book. I just think podcasts like yours are the way, like the first step, where people can listen to them at any point, when you're up, rocking back and forth with your kid, being puked on, whatever. You can have the podcasts and instantly be plugged into this community of people who get you and you can hear them saying the thoughts that you're having.  My suggestion would be like, get on the podcasts and get into the Facebook. And it's I mean, I'm more of an Insta gal, I find the Facebook groups can be quite negative, which has its time and place. I think it's great that there's a place for people to rant but I found they were kind of bringing me down, whereas Instagram, pretty pictures, captions and things. I was like, this is more my vibe, but I say linking to any social network, you can and through that. I mean, like how did you guys meet? How did that happen? Did that happen in real life? Or did that happen on social media?

Lauren Fenton  24:04

We're on this big Whatsapp group, which was kind of some friendship groups and people who'd met through chance encounters. Rina went to school, her kid goes to school with another friend of ours. So it was like kind of everyone was brought together into this Whatsapp group. And I'm not saying WhatsApp groups are brilliant, but this one was, so and it was pandemic-time. Yeah, during the pandemic, if you didn't have face to face opportunities, so it became our rant rave. And I think what you say about sort of being more passively engaged with something is really important. I think almost even in social media circles, you can you can join a facebook group without having to go like posting you can without being like really creepy. You can like spy on people on Instagram. It's like your Yeah, I definitely...

Melanie Dimmitt  25:01

Yeah, I lurk on heaps of Facebook groups, big time. But I'd say as well, I feel really fortunate that we did start this journey before COVID  a lot of the friends I did make, were just through sitting in the waiting rooms at therapy centres, like waiting to go into physio or OT and just exchanging like a tired glance with another parent sat across from you, and their glance would turn to a smile, the next time, the smile would turn into a hello the next time and then eventually you're going for coffee, and then you're going for a wine. So,in those therapy centres and being in, you know, big gyms, where you can see other families, with kids like yours, or, you know, with other things going on, doing exercises, that was a huge part of me realising I wasn't alone in this. So you know, you're gonna get your kid into early intervention. Anyway, you've got hope gonna hopefully be in these communities in these big therapy centres. And that's a lovely way to actually meet people IRL, and just how friendships organically develop, like the olden days.

Lauren Fenton  26:00

I have a few IRL start up in in waiting room friendships. Yeah. And, and weirdly, also a friendship that started when a physio put me on a blind date with another one of their mums, which was 

Rina Teslica  26:14

I've had that too, 

Lauren Fenton  26:16

I think, Oh, my God. Any therapist should do that. Like, please do it. Yeah, it's really, really lovely. And you can tell I think when you know, two people are gonna get on. That's really cool.  Yeah, that's a sign of a good therapist right there. I think if they're match making- that's a really good sign of it. Yeah. It's a real holistic approach there. Yeah, exactly. And tell us a bit about what you've done since Special, like in between special and the Blend, and then we'll move on to talking a bit about your experience.

Melanie Dimmitt  26:48

Yeah. So after Special, like a Special kind of got me into the disability space. And someone I interviewed in Special was a guy called Jordan O'Reilly, who was the founder of a disability support organisation over here called Higher up. And he grew up with a brother Shane, who was a lot like Arlo, and he had this amazing new concept for disability support where you, it's like dating. I work for this company. Now they hate when I compare them to Tinder, but it is you set up a profile for your kid or yourself. And you match with disability support workers, I don't know if you'd call them like care workers over there for the Disability

Lauren Fenton  27:24

Support Workers.

Melanie Dimmitt  27:26

Yeah, and like, as a parent, I wasn't even told that support workers were a thing, I thought that we'd be looking after Arlo and the only people on the planet who knew how to meet his needs for our entire lives, I didn't realise that there were people in a profession, who would be there to support your child and be as good as you if not more at certain things. So I was really excited to chat with Jordan, about his company and about his concept of matching families with support workers where they shared something in common, where they got along, as friends where, you know, the support worker really became part of the family. And after I wrote Special, he asked me if I'd help write his company story into a book. So I wrote a book with him, really got to know the company really well. And from there, he just kind of kept nudging me into the company. So now I work part time for Hire up, producing their news and features platform. So I commission writers with disability to write opinion pieces in response to the news. So you guys might have seen that Beyonce changed that lyric in her song. That was because of a piece that we commissioned that little old Higher Up, from how that got picked  up by the Guardian.  So we're making big waves. Yeah. So we're a tiny chain, but we're doing really cool things. And I do the NDIS podcast through them. So it's the National Disability Insurance Scheme we have here in Australia, which is incredible. It basically means all of our lifts, therapies, the new ramp that's coming out of our car now, his support worker, his equipment is all covered by the government by taxpayer dollars. So we're super lucky to have that here. We're fighting to keep it. So I do a podcast where I chat with other parents and people who are on that scheme about- it's great, but it's really fucking complicated. So you really have to know how to work it and make it work for your family. So I have a little podcast that sort of decoding that scheme and helping families do it better. But yeah, I guess I started working and writing in disability from a parent perspective. Obviously, I can't speak, I try and I'm trying to understand it better. It's interesting working with writers with disability as well. Hannah Devaney, who wrote the article that got Beyonce to change her lyrics is a friend now and always asks about him. She's really interested in Arlo and always asks about him. She's got CP as well, and I can ask her stuff, like why does he get so shitty with his sister sometimes when she's like, running around. I was like, is that because he's jealous? And she was like, 100% Like she said, I still have that with my sister 100%. He is just jealous that she can run away with ease. And having someone to you know, be able to like, try and tap into what he's feeling is just so valuable. So I'm learning so much from disabled adults, you know, better ways to support Arlo. So it's been really good for me. And I never thought I'd be working in the disability sector. I went from, you know, women's magazines, really into this space, but I love it. I love what I'm writing now, you know, before I was writing, like, you know, 10 ways to start your morning better. And now, you know, I'm helping to publish opinions from people with disability on important topics. I'm writing stuff I care about. So I never planned to be working in this space. But here I am. And it's been incredible.

Rina Teslica  30:43

Oh, my God, it sounds incredible. It's I'm just in awe of you. Just

Melanie Dimmitt  30:49

You're a writer too.

Rina Teslica  30:51

I am. So I'm doing that 10 ways to make your week look better. So yeah.

Melanie Dimmitt  30:58

They are fun to do a bit of that. Don't get me wrong. But have you started like, do you write about your experience as a disability parent?

Rina Teslica  31:06

No, but I feel like talking to you, I should start doing that. Like, yeah, I wrote a blog when Lua was born because I was sick of people just sending me WhatsApp like, how is she, okay? Oh, and I was like, leave me the fuck alone. So I just wrote a blog instead. And I was like, if you want to know what's happening in our lives, then just read that so I don't have to deal with the million messages that I get. Yeah. But then I think I just got to. I did it all the while that we were in hospital. But then once she came home and the responsibility of looking after her then on me and her dad, it was just way too overwhelming. So I was like, I can't do. So I still, I think I should, should get to it.

Melanie Dimmitt  31:50

Definitely do. And it's such a great way to build awareness around what our experience is actually like, does the parents like us at the beginning and read more this stuff and say it's okay, like you can do this this life is I mean, challenging, but still happy. So yeah, please do- we need more writing from parents like you out there.

Lauren Fenton  32:07

They're going to do it. It's amazing how many parents have a pivot? Like, I mean, it's kind of not surprising, but it's also like, incredible that, you know, you have kids, I guess your whole life view changes, potentially, in most cases. And that's going to change what you want to do with your life. But it's also, I guess, there's a lot of gaps. Which kind of leads us nicely to what happens when Arlo got a new diagnosis for his tube. So can you tell us a bit about the how that diagnosis came about and how you felt and then how you ended up doing The Blend magazine?

Melanie Dimmitt  32:52

The most random magazine in the world? It's a tube feeding magazine. 

Rina Teslica  32:56

I wish I wish that I had found this or that you had made it like maybe three years previously, that would have been really helpful.

Melanie Dimmitt  33:06

Well, I was still, we were still shoving food into his mouth three years ago, when we shouldn't have been, we thought he was really good at eating and he seemed to be enjoying it. And you know, if I'm honest, we were avoiding the inevitable. Everyone was always surprised that he achieved this with his level of disability. But we're like, No, we're good at this. The speech teachers were all saying yeah, it looks like he's developing a stronger chew and kind of anyway- just before he turned five, we did a modified barium swallow X ray that showed that he was aspirating on every single bite of food and sip of water that was going in and yeah, it was like nil by mouth. We're really lucky we didn't have to go through the NG horror and just said no, just get us into the G Tube surgery if we're doing this we're doing this. Within two weeks, he went from spoon fed to G tube and I don't know if it's the same there but the second they put a kid or a person on a tube- Even if you were eating regular food prior- they put you on a diet of commercial formula. Arlo went from breakfast, lunch, dinner, snacks to six bottles of a really disgusting smelling commercial formula. That was it just like drip fed through a pump. Yep. And there was something about this-  like there are a lot of things, like Arlo doesn't talk and doesn't walk. We're okay with that. We get, that we're on board. We see that that makes sense for him but there was something about eating that was truly fucked- that just really hurt.

Rina Teslica  34:31

Oh my God, believe me because I studied nutrition, so food is such a big thing for me, the family or whatever. And kids with new Noonans always have feeding issues. So like we knew, and she had a peg kind of from when she was four months old. They wouldn't let us go home without having that so I was like fine, but I will get her to eat. And just the milks were just disgusting and it felt so inhuman like just It's not normal to be having basically a smoothie of vanilla smelling, shite shoved down our stomach, like literally eight times a day. And it was like, I can't do this but she was so not interested in food. And it was such a struggle, mentally and just, I hated the whole concept. So I did give up. I was like, right? This is just how it's going to be. And I'm just going to have to suck it up. I tried blending. And I tried to like, take some sort of onus, if I can't control that you've got a peg and that you're gonna have to have smoothies, I may as well just make you something healthy. But then it was, she was so used to having the milks that it was such a terrible transition to get her to food. And at the same time, I was trying to orally feed her and it was just a fucking shit show. So I stopped completely. I was like, right, that's it until she decided, November last year, that I'm ready to start eating now, out of the blue, like it was just, nobody expected it. We had no clue that that was even in her mind frame of wanting to eat, she picked up the spoon opened her mouth. And she's been eating orally ever since. And now we're in the person removing the peg. But it's been like a yes.

Melanie Dimmitt  36:16

That is an amazing story. And you were totally going in the next issue of The Blend. That's very cool. I think a lot of parents want to hope for the tube to come out. And they're working toward that. We're very much with this. Again, we've thrown out the book right now- this is clearly once we got it right. Right. This is actually amazing. At the start when he was connected to a pump with these bottles, it just felt like he was dying, like we're end of life. And I think part of the problem there is that tube feeding needs a rebrand because so often it is associated with sickness and hospital and deaths. And there are sooner now I've met so many people and families to feeding where the tube is the reason they're healthy and having an amazing life. So my magazine was a part of yeah- the rebrand of tube feeding for families, so you're not feeling like this is the end. And yeah, we had to be really brave and kind of go against medical advice. And I went into the Facebook groups and was like, What is going on? My kid is like, the formula was terrible. He was puking, so much reflux, and then he was aspirating on the puke and reflux. And we were in hospital even more. And I'm like, apparently he was silently aspirating before- there was nothing silent about the way he was aspirating once we were on this formula, so it was such a low time. We were just like, What the fuck? Wait, we can't, we can't feed our own child. And that's just such a terrifying thing. It's the basic thing you need to do as a parent. So one night, I'd like put him to sleep. He had vomited to sleep. Basically, he was so sick. And I was like fuck this and like drove to Coles, like a local supermarket. Right before it closed, I bought his usual breakfast like yoghurt, WeetBix I was I'm just going to put in his mouth in the morning. And I did just like, stuff it like, I fed him which I'm not meant to do as he's nil by mouth, but I have no other option. This is bullshit. This was meant to help and it didn't. Anyway, luckily got advice from other parents, other families doing this through Facebook who said the formula is just not going to work for your kid if this is happening. Because we kept I kept saying to my dietician, what do I do? I've heard about these blended feeds and she's like, You can't try that until you get the formula right and this the formula was never going to be right. But the medical people kept saying it has to be right. Anyway, we just blended up with stuff he was eating before. So it was thin enough to go through a syringe. We put it in way too fast, the first time- it just came straight up but then we did it slowly. And from that moment on, his colour came back, his sparkle came back. He was himself and then he just started thriving. And now he just has normal food blend up, super thin with our Vitamix. He's back to breakfast, lunch, dinner and snack he eats with his sister, usually in front of the TV, and they're together and it's lovely. She's there with her little bowl and her little table that we call Cafe Odette. It's just made meeting normal again- it's not all medical. Yes, there are a heck of a lot of syringes involved and I'm like a chemist with my little mortle and pestle, like with his million medications, but we've got it down, like I don't even think about it anymore and I remember at the start the tube feeding seems so intimidating, even like how the clamp and you know there's so many bits of kit, there's so much going on. I cannot do this, it's so overwhelming. It's so scary. It's so medical. Now, we've just got it down and it's just again like a normal part of life but it was a lot of mess- you know when you bang the air bubbles out of a blend you end up with crap all over your ceiling.  Terrible.  A lot of learning but we got there and now he's never been healthier. He's, you know, he's thriving, being able to put it all straight in there when he's sick. Oh my gosh, like the medication side- he's hydrated. The poor kid was not getting any water, like we were there with his cut out car but it was mostly, you know, thickened fluids. I never want to hear the term thickened fluids again, it like triggers me. He's just getting so much water now if you can top dab, so it's been great. But yeah, at the start a bit rubbish and again, just like Special, I needed to know this was going to be okay. So I interviewed families, people who achieved, the professionals in the space. And I was like, why can't we have like a sexy magazine? Why can't we have, you know, the Vogue Living for tube feeding? They reached out to Ed Swann, who's this incredible designer I used to work at a magazine with- I was like, would you make this with me and sent her some ideas I had for the aesthetic and she designed it. She's my creative director. Now the two of us are making this thing annually. And yeah, my latest cover stars another UK talent. Loretta Hobbs, who's the nearby mouth foodie, who's this incredible person in the UK, she's a chef who's fed via her heart, she's on TPN. So she doesn't put any food in her mouth. And she's this amazing chef, sort of showing people, there are many ways to do this thing. And tube feeding is not the end, and you just make it work for you. And yeah, so it's the resource I wanted when we entered this space. And my hope is to just get it into the hands of as many tube feeding families, you know, preferably before they even get the tube in so they can see what this you know, all the options that are available to them.

Rina Teslica  41:24

And it's so difficult in the UK, because so it's been, it would have been three years ago that we would have started like the blended diet, but there is absolutely no support. And dieticians here don't like you doing it. And there's a big push back. So if you are to do it, they kind of sign off and say, that's your responsibility. If anything happens that's on you. Don't do it. But you know- they give you nothing. So at the time, so three years ago, the space was so there was nothing in the space, I couldn't find anything I found, like the most awkward book on Amazon that I bought, which was terrible. But it had some really nice recipes, but it was just, like really depressing. And it's like, shit, man, what am I doing? I don't even know what I'm doing. And then the fact that you know that if you're making it too thin, you're cutting down the calories, which means you have to give them more. And nobody tells you any of this. So it's...Yeah, I think that's why I gave up because it was just too too much. And when you're dealing with all the other medical bits, it's just way too much responsibility. So I was like I've had enough. But if I had had your magazine, it would have been different.

Lauren Fenton  42:35

Is it available in the UK like Is it is it a digital magazine or physical?

Melanie Dimmitt  42:40

It's free to read online, the Blend mag.com. You can read it there, you can get to get the first ones up on Amazon if you want. I didn't think people would care about it being in print, but they really liked the print magazine. So,you can buy it by Amazon or get the second one up there as soon as I can. I do like it print run of 1000 copies here in Australia and it's distributed through businesses that are in the tube feeding space, this incredible, accessible fashion label called every human send it out with every order during Feeding tube Awareness Week, Wholesome Blends, which are these great like pantry or shelf stable pouches of real food that you can feed your kid on the go, which is amazing, so you don't have to get out a frickin blender for every meal to be fine, and Tubies, which makes these gorgeous little G Tube accessories and things. Do you guys know about Bluey over there?

Lauren Fenton  43:31

Bluey as in the cartoon? Yeah, I love Bluey is like amazing. 

Melanie Dimmitt  43:40

So she makes `bluey accessories for all the tube feeding businesses and I give it out to some therapy centres. So it's a limited print run. But yeah, available on Amazon and there to read for free for anyone who wants to put in the details.

Lauren Fenton  43:54

We'll put in the show notes because I'm sure loads of people are going  to want to. I mean, I, so I'm not a tube feed- Bea is not tube fed, she eats orally but I had a look through the first copy. And it was incredible. I found it really really like I felt like I learnt loads and just felt like I understood so much more than- you know- I've got several friends, including Rina whose  kids were tube fed. And it's really good to kind of, I don't know, I think as a resource, not just for the parents, but for those around them, you know, for other kids to see. And because I'm sure you've experienced, you know, I know certainly even my kids, or my older kids asked about it like, what are you doing? How like, how is that, why is there food going in there? I think just for like family, friends anybody that's got any connection to the tube feeding community- its a wonderful resource- and I say resource, but it's also just like lovely to look at. It's just glossy and like it's the sort of thing you'd want on your Coffee Table like yeah, that's very nice.

Melanie Dimmitt  45:02

I hope so. Like we need sexier resources in this space as you guys know well- you either get a dodgy pamphlet, something that it looks like it's made for children with rainbow writing all over if you get anything, so I think

Rina Teslica  45:15

Why is the paper always grey? like it just makes it even more depressing I don't know if it's just me but

Lauren Fenton  45:20

I think it's the NHS, I think colour printing isn't exactly ...you know we're trying to trying to save money here in the NHS, so yeah black and white grey pamphlet.

Melanie Dimmitt  45:32

But even the brands,like the the disability brands the people that, you know make the equipment and like, why can't it look like Nike or why can't it look like you know, respite look like Airbnb- like why can't we have sexy branding? Certainly in Australia, like we've got the NDIS now and there's the money there- so you services need to be lifting their game. Why not focus on, you know having awesome brands and not even make it, you know, disability, just make brands that are inclusive for everyone. We don't even need like a separate sector. Why can't just everything be incredibly- this is like big, big or whatever but it was just so depressing, like looking even at some of the pieces of equipment that we'd have to have in our house. And being like that is so like looking at that just makes me want to die. Why can't the stuff be cute? There's been huge improvement but still I think there's a long way to go, to like find it attractive and standout. And I'll yeah, I will be very happy that at the moment ours looks like Frankenstein's monster should be in it. I know it It feels like it could be another project for you Mel. Like you've done so much. I mean, clearly so that the I guess the aims for The Blend, Special and your podcasts are all very similar. It's like connecting people and helping people and supporting people. What's next? What's world domination of disability, parenting space are you're going to? Ah, well, I'll keep bringing out The Blend. So that's become an annual magazine, which is great, because I love magazines, I really miss working in mags. And I just love putting it together. And working with Edie is really fun. But I think, long term I love the idea of starting some kind of agency, where businesses and disabilities, say can come to us and say we want to make a resource for our community. We want it to look cool, whether it's a magazine or book a podcast, and we help them do that. Help them with brands and connect them with cool designers, connecting you know, with, people they can consult with, adults in the disability space, make sure that they're factoring in a hell of a lot of lived experience, bringing in disabled talent into their projects when they're creating these resources. So I love the idea of yeah, like a production company agency that makes stuff but also helps other people make beautiful resources that showed the full, you know, a bigger, vaster breadth of experience within a certain space, whether it's shoe fitting or a particular disability diagnosis. I just love the idea of having a lot more, you know, hopeful, really sexy looking resources out there for families like ours.

Rina Teslica  48:22

Amen, yeah..

Lauren Fenton  48:26

 Yeah, I'm sure there are so many parents at home listening to this or wherever they are, thinking yes, I want that. I mean, it's even I'm just thinking like, even for B for her AAC device. Like why did he have to have stupid voices like what you know, like, 

Melanie Dimmitt  48:43

Why doesn't apple get behind that? Imagine if Apple made the devices, they'd be gorgeous. I feel like the technology that we have for AAC is like 20 years ago, when you compare it to mark when I might Why is Apple not moving in on this space? Seriously when we're a huge market? It just, It blows my mind and of course it costs about 10 times more for this clunky piece of kit than it would for like a sleek iPhone, so there's a lot of work to be done, ladies, I'm telling you what but your podcast. I must, like the second I saw it I was like yes, because your branding is gorgeous. Your tone is fun. It's so relatable that I was kind of sad that with our recording I didn't get to hear your jingle at the start because like you got that made right, it's the coolest like song.

Lauren Fenton  49:32

that's AE Mak. Shout out for recording that especially for us. We do love it.

Melanie Dimmitt  49:41

It's so cool. Just imagine a parent new to the space and you find this like, bright pink neon podcasts and you tune in and it's this cool song and it's you two, like having fun, like that just will make a world of difference. So I think more podcasts like yours, more. Yeah, attention to branding and making things fun and relatable. I think we need so much more of that.

Lauren Fenton  50:06

I'd love to have a festival where all of this stuff came together. Yeah. Yes.

Melanie Dimmitt  50:13

Like felt like yeah, like some kind of. Yeah. Where are we doing it? Like a Glastonbury?

Rina Teslica  50:19

Yeah, that's

Lauren Fenton  50:23

A Fucking Normal Glastonbury but

Melanie Dimmitt  50:25

But completely accessible. No mud because it doesn't work with a wheelchair like

Lauren Fenton  50:28

yeah, hoists everywhere. It's just gonna be all inclusive, obviously. Yeah, I don't know. I just think it's and it has to be sexy and have lots of really cool bands. And yeah, I mean, yeah, 

Rina Teslica  50:46

Just the dream

Melanie Dimmitt  50:48

We have Ability fest here, which is pretty cool. There's Dylan Alcott, so he was like a pro tennis player in Australia and like Paralympian. I think he started an all inclusive Music Music Festival in Melbourne, called Ability fest, which , Yeah, I haven't been but apparently it's like, fully inclusive there, supporting people there to help. A lot of the bands have disabilities. That's really cool. Yeah,

Lauren Fenton  51:17

Fantastic. We just need to go to Melbourne or he might need to do a UK one or a European one. That sounds amazing. Oh, gosh, yeah, that's it. I have to say, talking to you Mel and looking at everything you've done it. It's really, it's just so positive and uplifting to think that, you know, things are evolving. There are people like yourself who are trying to make things better for all of us because they're producing stuff that's going to you know, make everybody feel less alone and normalise it, make it feel like it's just part of life, having additional needs.

Melanie Dimmitt  51:58

Yes, it's just unacceptable- the resources out there. Like I remember when I first got his diagnosis, a social worker came out to us from the organisation we were linked in with and she gave us a DVD. And you know, this was six years ago, we didn't have anything to play a DVD with. And when we finally managed to play it, it was all about families living with kids with CP and it was so depressing. And that DVD is like the reason of Special. I was like this cannot be ,this cannot be what when we're staring into the future. This thing is like, we need a new DVD. I can't make DVDs. I made a book but we just need.. Yeah, that we need something with hope. And it's something we can relate to. I was like you can't be giving this to your families. And the other things she did was read to us from a children's book about a little girl with curly hair whose legs and arms didn't work like the other children's legs and arms. And she sat there reading

Lauren Fenton  52:53

Oh, Jesus.

Melanie Dimmitt  52:54

Oh, love, like read the room. This is so patronising, and she meant well. This person just going out to new families with a kids book and a dusty DVD and I was like, this cannot be, it's not good enough. And it's parents, it's like you guys saying that this stuff needs to exist. it's not good enough that we're sort of just left on our own with awful Google, which you just need to stay the hell away from. We need, we need better things thrown at parents who are new to this, so they don't think it's the end of the world.

Rina Teslica  53:24

I think it's, what I find really frustrating with the whole world. I mean, the disabled world is there's so much support for our children, they're thrown into like the therapy, this that this the support workers care workers, la la, and the parents are just sidelined completely and I find that, it just it pisses me off basically, it just really pisses me off like I am also here. I also need support, I also don't know what the fuck I'm doing. And yes, of course my child is the number one priority I understand completely but there needs to be more support for parents and stuff like the podcast, the books that just to show that there are others like you that are going through something similar and you're not alone is just yeah, the cherry

Lauren Fenton  54:16

And even just fucking learn my name. I'm not being funny, but that used to like really piss me off. And maybe that's unfair because I think you know, it's about your child when you have a therapy appointment but just constantly like, Mum, What do you think? Mum- are like mum's going to stand down, mum's going to do this. It's like, Come on, just learn my name, please make me feel like I'm part of this too. I'm not just like 

Melanie Dimmitt  54:40

I understand that in hospitals because I'm like, of course they're not going to remember every patient say but- yeah to say that. It's like what you said before, like you know it's a good therapist if they like our ones, they will always ask and how are you going? As well as Arlo, they get it, they get that the kids you know wellbeing is all is very connected to your well being and that this is a family experiencing this. And that's how it has to be looked at. And you're right. I remember that in the early days going to therapies and like, Arlo was loving it. He was living his best life, smiling way. And I was just like, miserable and didn't know, you know, it was so sad. And we need support, like you say, like, once the kids in therapy, they're good that they're having fun, a lot of this high worth, we're just off on the sidelines just dying. So we need we need a bit of love in those, certainly in those early weeks and months, my God,

Rina Teslica  55:32

I remember, it was a physio appointment. And I was super depressed, I chopped off all my hair. And I was like making a statement, like this is, I'm just not okay. And the physio was like really lovely, super, super lovely. Did the therapy and she saw me and she obviously saw the hair and she was like, you've cut off all your hair. And then she put her hand on my shoulder. Are you okay? And then I just like, oh, and then she like put me to therapy, whatever. But if she hadn't asked or made that kind of wish she'd noticed. I mean, that kind of hair short is like a big statement. But still, she was like, What the hell is going on? Are you okay? No.

Melanie Dimmitt  56:16

Yeah, that's when you know, yeah, you're on to a good one. And I find like, once you find that one good therapist, that's when things start turning around. And we found this physio Sarah, when he was eight months old, and she just loved him, got him, asked me how I was, got very involved with our family. And it was like, everything started turning around from that point, because these are the first people you meet in this space. It's so important, everything they say you remember and the way they make you remember and I just wish. We still see her now via telehealth because we're like, we're not letting you go- she's moved to a different city but like we will always have Sarah  as our physio because she is, just was an absolute angel from day dot and made such a difference.

Lauren Fenton  56:58

So important, so nice. Well, is there anything else that you wanted to say about projects that you've got going on Mel or

Melanie Dimmitt  57:07

Just that he's a cool kid, like for anyone who's you know, I guess if you think about quadriplegic, cerebral palsy, wheelchair nonspeaking. On paper, like it looks pretty, you know, like scary bad stuff, but he's just taught me, you do not need to be a walking talking body to have a happy, meaningful life. He's an incredible kid, smart kid, really ordinary kid, in a lot of ways. So I guess if anyone is grappling with, you know, a CP diagnosis. Yeah, I wish I'd had that perspective that even with us, you know, I am now like on Dean Sherman, that wonderful brother I told you about where I'm living my worst nightmare. I was one of those parents who, you know, if I'd known I was gonna have a disabled child, I would have never had children. And I hate saying that now because I would have missed so much and it kills me. But Arlo is the light of my life. I would I honestly would not change him. I don't want to know Arlo without disability. And it took me you know, years to realise that- he showed me, it just took sort of letting him teach me and show me who he is. But he's the best and everyone who meets him just adores him. He's the most popular incredible kid and he, you know, we have gorgeous Odie as well and they have a lovely relationship. So there is certainly so much happiness to be had when your family has a profoundly disabled child in it, which I thought was impossible. But yeah, like I said, we laugh most days, it's really challenging. I'm not gonna sugarcoat that there's a lot of times when it's really unfair, like when he's sick and he misses out on stuff. But I think you know, the highs certainly balance that out and we just get this incredible life and this incredible perspective on the world and I get to meet parents like you and I just have this incredible network of worldwide other parents doing this thing and we have this instant rapport and there's something pretty magic about that. I think.

Lauren Fenton  59:03

Oh, incredible. 

Rina Teslica  59:05

So beautiful. 

Lauren Fenton  59:08

Well, thank you so much for coming on and sharing I mean, I don't know about you Rina but I want I want to jump on a plane to Oz now.

Melanie Dimmitt  59:19

I need to come to you. I miss London so much. Oh, I need to come back sometime so I'll come and visit you and we can hang out in real life. Yeah, sure. Sure. Yeah.

Lauren Fenton  59:31

Beautiful and can you finish then just by telling us your- you've listened to the podcast so you know that we always end with asking our guests for their Fucking Normal, so just short,snappy. What is your Fucking Normal, Mel?

Melanie Dimmitt  59:50

I love how you guys say 'fucking', it's so much better with an accent. My fucking normal is having superhuman strength in my thumbs from shoving food through syringes. I have like Arnold Schwarzenegger thumbs- they are so strong and it is the most, it's like the fittest part of my body is my thumbs. It's completely useless unless you're pushing really thick blends through syringes  and so it's just you know, it's a skill that I've developed over the last couple of years. I'm quite proud. Super strong thumbs is my fucking normal

Rina Teslica  1:00:20

I love, because I could totally understand why. Yeah. I could never develop that. I've always developed that one, with the palm of my hand. Oh, yeah, I've got the

Melanie Dimmitt  1:00:34

Like this... Again, sorry, bad for podcasts, both thumbs gone on the syringe, you get your own you get your groove, don't you, whatever way it is.

Rina Teslica  1:00:43

Amazing. Oh, well, thank you so so much for being on the podcast.

Melanie Dimmitt  1:00:48

Well, thank you guys. It's been very fun. Thank you so much for having me and yes, let's definitely give away some books to the community if you're keen. Well, I'd love to gift a couple of copies of Special.

Rina Teslica  1:01:00

Oh, that would be amazing. Thank you so so much, Mel. Bye, everyone.

Transcribed by https://otter.ai

Epiosde 12: Telling your own story with emmett de monterey

~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Lauren Fenton  0:16  

This is the fucking normal podcast, the cheers, tears and Friday night beers of parenting disabled children. 

Rina Teslica  0:24  

I'm Rina, 

Lauren Fenton  0:25  

and I'm Lauren.

Rina Teslica  0:26  

And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories, and chat about the things that we've learned and are still learning.

Lauren Fenton  0:40  

Prepare to sometimes laugh, sometimes cry, but hopefully leave with a shot of optimism in your arm. And don't forget we are talking from a parent's perspective. We would never presume to talk on behalf of the disabled child or adult. So expect bad language, and quite frankly, some brutal honesty.

Rina Teslica  1:00  

Because really, what the fuck is normal anyway?

Rina Teslica  1:14  

Welcome to the fucking normal podcast. We're your hosts. I'm Rina,

Lauren Fenton  1:18  

and I'm Lauren.

Rina Teslica  1:19  

And today we'll be talking about owning your own narrative. So far, we've talked mostly with parents with disabled children. Families that, like Lauren and I, are not in a cliched, carefree, Pampers advert of a parenting path. Like all mothers, we're learning about our kids as we go. And as they grow. Learning who they are, what their needs are, be that medical or emotional, we're making decisions and advocating for them and also crucially, trying to help them to understand their own identity. What is their story? We hope that they will be able to take ownership of their story, and that we are giving them the tools to feel proud of who they are, and to take up their place in the world. So today we'll be talking to Emmett de Monterey on his story.

Lauren Fenton  2:01  

So who is Emmett. Emmett grew up in southeast London during the 1980s. He was diagnosed as having cerebral palsy at 18 months old, and at times has felt the full weight of society's prejudice, both ableist and homophobic. Undergoing cutting edge surgery in America at age 12, Emmett was a charity poster child for a groundbreaking gait surgery for cerebral palsy, something that would lead me to confused emotions and sometimes scorn from the disabled community. Now Emmett has written his life story in a truly wonderful book. It is both heartwarming and heartbreaking, as he describes his hopes and dreams, at times his shame and disappointment, and ultimately his fight to be seen and accepted for who he is. We're also welcoming back Gemma Sherlock to join the discussion today, who we interviewed in episode two of the podcast. As a reminder, Gemma is mother to two boys, her eldest Jasper now eight has cerebral palsy. She's recently got to know Emmett and will lead off our discussion with him today. So welcome Emmett and Gemma. So great to have you both. Yeah

Emmett de Monterey  3:10  

Such a pleasure. Thank you. 

Gemma Sherlock  3:12  

Yeah, I was going to just say how beautiful your book is. And I, I haven't got all the way through. But what I have read so far has been really moving for me actually. Because it's something that I've thought about doing myself potentially writing a story of mothering a child with a disability. And yet something's always stopped me from doing that. And I think really, it is that line between where is it my story? And where does it become his story? And I was fascinated to know how you had approached that. You write so sensitively about your parents experience. In a way that's so graphic as though you were there? Did you sit down with them talk about that time or How did you approach writing?

Emmett de Monterey  3:59  

I should just say that I was selected to be part of a scheme run by Penguin Random House called right now, which discovers and nurtures new talent from communities that are currently underrepresented in publishing. So I sort of won a competition to write my story. I was one of 10 writers to be asked to write my story. And so when I told them what was happening, and that I had decided to write my story, I realised that actually, I couldn't tell it without their input, because it's not just my story. And as you say, it's the story of a family and the story of the way all of our lives changed with my diagnosis, not just mine, but their hopes and dreams for me and their, yeah, the visions of life for themselves that they had, you know, radically changed when they got my diagnosis. So, the way that I approached it was to kind of interview that or not in a formal way. I didn't sit down with a dictaphone and kind of, because I was very aware that for the first two or three years that I write about, I was there, but it wasn't really happening to me, it was much more at that point happening to them. So I really wanted to know, how they had felt, you know, what their anxieties were what just what it was like to suddenly have this diagnosis and have to learn a new language if you like.

Gemma Sherlock  5:26  

But it's interesting that you, you feel that those first early years, like the diagnosis years, weren't happening to you. Because you they were happening to you. Because it's pre memory, I suppose. And they are your advocates and your carers. As parents, we do kind of take ownership of that part of your a child's story. And at the moment, that still does feel very much like my story does not feel where you are at the moment, we're on the cusp of that. And as Jasper turns eight, and is becoming, you know, a separate being in so many ways. And in so many ways, not, which I'm sure we'll get on to that then makes me question how much of it is my story and how much of it I've created and imposed upon him and how you allow that to flourish. And I think being able to write it down, go back in time experience what they're experiencing, and then find your own voice from that must have because it was a therapeutic process, or?

Emmett de Monterey  6:30  

That's a really interesting question. I think the most honest answer is that I hoped it would have been much more cathartic, and turned out to be. And one of the reasons why I wrote it was for the boy that I had been, because obviously, I'm in midlife now. So it felt like a kind of safe vantage point to write it from, because a lot of the challenges that I write about in the book, I've now safely traversed. I've got a relationship, I've got a future I've got, I'm much more settled than I was. But I'm afraid it didn't feel cathartic, actually, it felt, you know, when I submitted it, finally, to my editor, I had expected to feel resolved around it. And I just don't, quite honestly, I'm really pleased to have written it. And I'm really, and I really hope that it resonates with people and that it finds an audience. But it was a much more emotionally complicated process than I had imagined. Although having said that, you know, I'm very glad to have done it. Very glad to think of any opportunity. I think, as a disabled person, because ableism is so insidious, you know, internalised ableism is still a factor as well. It's not a process that can ever be fully resolved, because you're always in relation to the society in which you function. It's never something that stops in a way, in a way that as a gay person, you're all you're always coming out, you know, that's never a process that ends, whatever social situation you're you're in, there's an opportunity to either come out or not, there's a decision that you have to make. So it's kind of similar to that.

Lauren Fenton  8:17  

In the process of writing it and talking back to your family, were there any kind of revelations for you? Because, like, say, there are things that you were learning about that you didn't have memory of, or perhaps that hadn't talked about before with your parents, like your birth story, or the specifics of your diagnosis? Were there any revelations for you?

Emmett de Monterey  8:35  

There were lots of things I didn't know and there were lots of things I hadn't wanted to know. And what really struck me and really made me feel sad, for my mother in particular, was just how alone she felt with it. Because I hadn't really understood what a trauma it had been, I mean, a physical trauma, what a physical trauma it had been for her. And I have, I have to state that, you know, this is in the late 70s, which is a very, very different time, to the time that we're living in now. And you know, her body was kind of, for want of a better word taking control of during my birth process. She told me she wanted to get up and walk around, and she literally couldn't she was forced onto her back. So anyway, I don't want to go into that too much of what I understood in a way that I hadn't before just what a trauma it had been for her and, and how much sadness and regret she has around that, you know, we have a great relationship. She's a wonderful person. She knows she's terrific, and both my mum and my dad are but yeah, I suppose I felt really sad for her. And as a younger disabled person, I was very focused on my own grieving process my own and coming to terms with what my diagnosis was and what my physical limitations were and, and how the world saw me as a result of that. And I hadn't To be frank, I hadn't thought about my parents,

Gemma Sherlock  10:13  

and neither should you. It's a fascinating process to go through when you write your memoir, and to go back into open your mind to your parents experience. I mean, not many of us would ever really do that maybe having children does force you to kind of have a new understanding of your parents, but particularly under those kind of extreme circumstances and all the surgery then went through the experience for her, and also probably caring for your mental well being, I think it's incredibly compassionate of you to be able to put yourself into her purpose, because really, it shouldn't, you should, it shouldn't be for you to she wouldn't want you to have to do that. But you've chosen to do that. And it comes across really, really sensitively in the book is just Oh,

Emmett de Monterey  10:56  

thank you very much. 

Lauren Fenton  10:57  

I guess it's like Rina said at the outset, we've largely talked to parents in a similar boat to us. And as Gemma said, your mum comes across as just the most amazing woman in this book. Clearly, not every everything that parents do helps or is in hindsight, the right thing to do. Parents make mistakes. But it sounds like you had a very empowering and safe home to grow up  in like that all that love and acceptance was huge. It's big question, what did they get right your parents that you know, we can learn from as parents to disabled children?

Rina Teslica  11:33  

Please share share. 

Emmett de Monterey  11:35  

I don't want to... well, why not boost them unreservedly? I would say they got most things right to be perfectly honest, they were staunch advocates for me. And they fought for me every step of the way from investigating medical options. Fighting for my schooling, I was one of the first people to undergo the process of getting a statement of special educational need. I was, I was one of the children in the pilot scheme around integration into mainstream school. So they, they pushed for that. And every step of the way, my parents wouldn't just take the received medical wisdom, they would always ask why. And what's the benefit? If you're, if you're proposing an intervention, be it surgical or social, for our child? Why, and actually, they fought for me to get into mainstream education, because I write about in the book that I was in a disabled nursery to begin with, and my mother and father were very against the idea of segregated education for the disabled, because disability in this country currently stands at 22%, you know, of both visible and invisible disabilities, and they didn't want me to be hidden away in any way. Because, you know, I think we need to rethink our relationship as a culture to disability because it's, it's a it's a material fact. So why should we be hidden away as though we don't exist? So and when my parents were saying to the people at my nursery, that they had this idea that they wanted to put me into mainstream education, the principal said "oh the world can be very cruel. Children can be very cruel, and there's always going to be a space for him it, should he need to come back." And actually, I flourished in so I kind of it's a long answer, but they really did everything right. And the the internalised ableism, that I began to feel an experience later on they were very distressed by. They fought for me to accept myself, much more than I could initially. Because as I grew, I began to see that people didn't look like the people didn't walk like me. There were things that I couldn't do. 

Gemma Sherlock  13:57  

Do you remember that time of consciousness of feeling different from other people in 

Emmett de Monterey  14:03  

Very much 

Gemma Sherlock  14:04  

Do you remember what sort of age it was? I'm fascinated to know, because I think I think Jasper's always had an awareness that he has some differences, but we talk openly as I'm sure you guys do, as well, that print everybody has something, but I think he has an underlying understanding of disability but he still doesn't quite know what that means. So I'd love to know what your conscious memory of your own disability? 

Emmett de Monterey  14:31  

It's a really ordinary kind of quite prosaic moment, I was walking down the street with my mum and I had I was initially carried, and then I started to walk on a rollator, a children's sized rollator and then I sort of graduated from a rollator on to my first pair of baby sticks. And I was learning to work on those and finding it quite difficult. And I walked down the road with my mum one day, I think just to the Sweet Shop And it was a very sunny day, so there were shadows on the pavement. And I remember watching her, she was a few steps ahead of me. And she was just sort of swinging her arms and just kind of she had this relaxed, lazy rhythm, you know, and, and I looked at myself, and I could see my shadow. I must have only been about five or six. I mean, it was really that young. And I could see myself on the pavement. And it was the first time I saw the kind of image printed on the pavement. And I thought, it really frightened me, here was this person I loved most in the world and I became very aware of the distance between us. And I think I say, I could I could run to her, but I could never catch up. So I became very aware of that gap. As a very young child, any gap between you and the people that you love, and the people that take care of you, is very alarming.

Gemma Sherlock  15:55  

Isn't it fascinating that it was a it was like a physical reflection of yourself back at you that you could then see your self not in a mirror, but they can almost draw in. 

Emmett de Monterey  16:08  

Exactly, exactly 

Gemma Sherlock  16:10  

that, to see ourselves, sometimes we need to take ourselves out of ourselves. And that was the moment that we suddenly saw the difference. I was watching last night crip camp again, I know we've talked about this, and for anyone who hasn't really, please go and watch it because it is even as a parent of a child with a disability. And I know you've been doing it yourself. It's just so eye opening. And there's a scene, it's about a camp just outside of New York in the 70s where kids with a range of all different needs and disabilities could go to camp like all of their friends, and be free for the first time from their parents and their carers and just hang out with each other and have a summer. And that a lot of those children then went on to do incredible things in the future in terms of disability rights. And there's a scene in in that film when they when the kids are sitting together talking about their parents, and they talk freely about how much they love their parents that how reliant they are upon a parent. And the the overriding theme of that conversation is the need for privacy, the need for freedom, the need for liberty, and it really hit me like a tonne of bricks because Jasper is so young, it's so easy to care for a small child. But as they grow, and they need more freedom, how do you how do I as a parent separate myself in that way, especially when they have seizures or you know. I have a camera on him all through the night. He's going to grow into a teenage boy, he's going to want freedom. Do you remember feeling angry or frustrated or parents and that like conflicting feeling of like needing their care but also wanting to be liberated? 

Emmett de Monterey  17:56  

I remember one of the physio therapeutic interventions that I went through pre surgery, so it was eight or nine, I had to have my hamstrings, my hamstrings were getting really tight and my I've got cerebral palsy to like Jasper. But my subsection of that is the spastic diplegia. So it means that my muscles all over my body are very tight, and they needed to be stretched. And one of the things that was produced was with these splints, these nighttime night splints, so I was basically strapped into these rigid plastic tubes with knee straps and ankle straps, and had to sleep in them. Oh my god I hated hated them so much because because I like to sleep curled up. And I like to my legs up to myself. And it was the first time I began to have real disagreements with my parents, because they wanted to follow the advice that they were being given. And they felt that they were being advised correctly. And I really I just hated them so much. And it meant that I couldn't sleep properly. And I would always call them in the middle of the night to be released from them because they were just so uncomfortable. And in the end we just stopped using them as a family and we didn't tell them

Gemma Sherlock  19:17  

that's interesting because Jasper is about to start serial casting on his leg. So it's it's similar. He will where a cast for a week but they stretch the muscles and ligaments and then they'll switch it and they'll do that for four weeks. He knows it's happening and he's really angry about it. But he's grown into a very compliant complicit job because he's had so much surgeries, so much intervention, but he never says no, he's just coerced and everything and I'm the feel I'm the one that coerced and so I'm the split between my I'm doing it for his care, but then I just feel sometimes kind of monstrous, and he knows the casting is coming. I feel really conflicted about it because I know it's probably for the best. But to hear that, you know the anger that you felt is you has its, it's an emotional thing at what point so your parents said no no more.

Emmett de Monterey  20:06  

They this is kind of on quite a selfish level, they didn't want their sleep interupted. They got to a point where they were exhausted. And it's an interesting point that you're raising Gemma about questioning what is beneficial? And what is ableist? And what is the that line between what is ableism? What is pandering to the medical model, it's difficult because you want to allow your child to celebrate their body, to be at home in their disabled body and to embrace their disability in a positive way. But at the same time, I hear what you're saying. And certainly, it's what my parents went through that you want to do what you feel is best for your child. And I really feel for you because at the moment, it doesn't sound as though you can have the conversations in the way that you feel you need to. So yeah, it's I don't have an easy answer. And I can't speak for Jasper's experience.

Gemma Sherlock  21:06  

It's just a lovely opportunity to talk to somebody who to you Emmett, who lives a life as a person cerebral palsy as opposed to just parenting somebody with cerebral palsy. And with the benefit of hindsight, we're all different. Everybody's needs are different. And you can't answer anything specifically about Jasper. But just the flip side of it is, yeah,

Emmett de Monterey  21:29  

That's lovely of you to say, but one of the reasons I was so keen to do this podcast today was that it's about the whole experience, that it's about the way it affects the children, the families, the interactions that we all have with wider society, and what they look like, how to protect one another from quite often a very hostile society. So it's a pleasure to have this kind of conversation,

Gemma Sherlock  21:59  

Did a moment in time come when you were able to take ownership over your own medical needs and decisions? Like do you remember that being a kid? because obviously, up until now, I've made, I've signed all the agree, you know, the surgery forms and made all the decisions.

Emmett de Monterey  22:17  

First time that happened was when I was about 10, or 11. I was under the care of Guys hospital at the time. And we had some very good consultants and a lovely woman who I write about in the book and she said, by the time your child reaches his adult body mass, he will be pulled off his feet into a wheelchair. And they suggested some quite haphazard medical interventions, which were the only things that were then available. A process of hamstring cutting. And also pills like Baclofen, which is derived from a Botulinum Toxin, Botox injections as it's now become, and my parents were kind of like, you haven't been able to give us a satisfactory answer as to what this will achieve. And they were quite bolshy and brave. And they said, We're not going to allow you to cut up our child and on a whim, it's not good enough, you know, because, you know, you'd get two children, and they'd have the same diagnosis. And they'd have the same surgical procedures, radically different outcomes. And then I was put forward as a candidate for this surgery, which at the time was really groundbreaking. And I remember going to Guys and being photographed and being filmed my my gait being filmed. On the way home, my mum said to me, and again, this is a scene in the book. She said, If you don't want to go, you know, we are that way. This is a family decision. But ultimately, it's your decision. And if you don't want to go and you want to have life in a wheelchair, then it's far from the worst thing that could happen. And it can be navigated and it can be embraced. Because I think she felt that one of the risks of the surgery is that I wouldn't embrace my disability, I wouldn't embrace my body as it was an actually, while I don't regret the surgery at all. And I'm quite glad to have had it still. And we'll get into more detail. I think it did increase my internalised ableism enormously and I think it took me a very, very long time to be able to inhabit my disabled identity with any degree of pride and and now that I'm in midlife and have an easier relationship with it, I have a great deal of sadness around it, a great deal of grief around it because actually, my body was never the problem. And the social model of disability, quite rightly argues that it's the prejudices of the people around you in the wider society around you. that are much. I can't speak for anybody else, or any other impediment than mine. But but in my case, certainly, the built environment is as disabling as my impairment and people's prejudices and people's. The barriers to my accepting myself are so pronounced still.

Lauren Fenton  25:23  

Can we turn to the surgery then and just explore that in the book, you talk about the fact that you were in a documentary that you were filmed the whole time, there was a lot of tabloid stories about you. And as tabloid stories often are, they were with a over inflated potential outcomes from the surgery that you were undergoing. So that must have been and you talk about believing, believing or hoping that there'll be some sort of miracle through this surgery, as opposed to what the doctors and the medical people involved with telling you, 

Emmett de Monterey  25:57  

It's really difficult to I mean, I thought about this a lot as I was writing it, because it's, I have quite a difficult relationship to it still, because on the one hand, I'm very grateful and glad that I went through the surgery, and in some respects, because I'm still able to walk at 46. But on another level, going through that kind of experience in the public eye, was really peculiar. But I should say, as well, that we're a very small family, we're only three. And some of the journalists Well, most of the journalists that came with us, and the news crews that came with us, a huge media hoopla was actually really in some ways really good because you were too distracted, to be able to think about what was gonna happen. And the people became friends 

Lauren Fenton  26:47  

They gave you presents didn't they, in the hospital?

Emmett de Monterey  26:49  

they became real friends. And they gave me a lot of care and consideration. And yeah, it was quite, it was quite useful in some ways. But But what was what was so difficult was, and again, I don't really blame them for this. But the media rhetoric around the surgery was quite simplistic. And I remember a headline, a particular headline from the south London press at the time, was boys sci fi bid to walk. Which again, makes walking the gold standard, which, which now as an adult, I'm slightly uneasy if

Lauren Fenton  27:26  

You were so young, as well, I mean, like to read that about yourself in a newspaper, aged 12 were you?

Emmett de Monterey  27:33  

Yeah, and I remember the surgeon came to me immediately, not immediately, because I was unconscious for nearly a week. But when I came round, he said to me, I'm quite uneasy about the notion, he found that the media can noise around now story really battling. And he was a scientific man, he wasn't a media person at all. And he just said, I just wanted to clarify something I want to say, we're talking in terms of improvement, we're not talking in terms of any miraculous outcome. So you will be able to walk well into adulthood, and it will be much more energy efficient, but it's not a miracle, it's not a miracle, and you will not be able to walk unaided. So he was he was very uneasy around that the media narrative. But I also don't blame the journalist because that was the story that they were tasked with telling 

Rina Teslica  28:32  

You were the poster child for this, did you feel like you and your family had to kind of play a role, you know, like, super grateful or super happy or because it was being played out in the media so much, and it turned into this thing.

Emmett de Monterey  28:47  

Well I remember my parents were interviewed quite a lot for the QED documentaries, because there were two in the end because the first one was so well received, and they weren't interviewed on their own. And they were quite candid about, about what a bolshy teenager I was becoming. That how awkward I was becoming and about how I was stepping into myself. I wasn't too grateful. And I wasn't too like. And there were times when I certainly wasn't polite, and I certainly wasn't. Because it was it was awkward to be, even though it was well meaning it was awkward to be the focus of that much attention. And I remember the charity office, the charity was called 'One Small Step'. We helped them raise money to bring the Gait Laboratory technology to Guys hospital, and they I used to get a lot of mail, particularly after the documentaries aired. And it used to come to the charity offices and they used to go through it and then forward it to me. And occasionally, very peculiar stuff would come through like caricatures that people have drawn of me with Bible verses underneath. So there was this linking of the idea of disability with sin. The idea that somehow my disability was a test, or somehow my fault, something that I had morally fallen short of. I mean, so that was just bananas, and really upsetting for us to receive as a family. And in the end, we asked for them not to forward anymore of the mail, because it was really quite intrusive and peculiar. And it gave me my first taste of the way disability is problematised in our culture, and like the campaign that's going on at the moment, with that charity, Changing Faces, where they're trying to kind of interrogate the narrative, you know, that lazy Hollywood shorthand of if you're a villain, you very often got a facial deformity or, or a disability. Exactly. So, so why why has that become a shorthand in our culture? So that disability is somehow seen as a failure and a moral failure? And I find that really problematic.

Gemma Sherlock  31:06  

Did you have any feeling at the time that you're actually losing, you could potentially be losing something intrinsic of who you are, and the idea that you're suddenly going to have this miracle and you could walk? Even though that really wasn't what it was? Did you inside have a feeling that actually, I quite like this?

Emmett de Monterey  31:26  

I'm afraid I'm afraid not. That's something that's come to me in much later life. And I'm sort of ashamed to acknowledge how long it took me to inhabit my disabled body. With anything like the pride. The messages I've received as a child I internalised enormously. And I really believe that the messages that I was receiving about that I was the problem, and that I needed to be fixed. And so when that fixing process didn't didn't look like I imagined it would, I went into a very profound grief, I write a scene in the book of where they take my I get Guys to have my cast taken off, and they take the bandages off, and they take the stitches out. And my parents, my grandmother's, they're looking after me, and I have my first bath for like months, I'd been having sponge baths and washing my hair in the garden. And they leave me alone from for a while to just look at my new body and look at my legs and my grief around it is so profound, because I remember looking at them and thinking, they've changed but they haven't changed me as much as I had hoped and would have liked them to. And I say at the end of the chapter, you know, I would always be walking, but I would always be balancing on my hands. So, you know, it was a change, but it wasn't nearly as much as I wanted. And now that I can inhabit as a person in midlife, who is very healthy actually, and is walking and having a rich, full life, I have a great deal more compassion and respect for my body. And one of the things my mother particularly, was quite anxious about around me having surgery was that I wouldn't be able to embrace myself, but that it would potentially alienate me from my disabled community. And in fact, that's exactly what happened. You know, I was in mainstream education, I didn't have any disabled friends, I didn't have a disabled community or a disabled culture. And so I was always in a position where I was feeling like I had to play catch up and change in order to fit Yeah, exactly.

Gemma Sherlock  33:48  

Or somehow not as much as? I had a sort of flip experience in that when I was 18, I broke my spine, from the top of my neck down to there. I was in hospital for a long time, I was told early on, you won't walk again. And it was that realisation as a young teenager that I'm going to live my life as somebody who doesn't walk and in a wheelchair, trying to grapple with that in my head, this feeling that I'm going to be somehow I won't be able to have these friends anymore, and I won't have the same life anymore. And as it turned out, I have surgery and I can walk they just fixed it with a plate. But I definitely went to that space of just thinking like my whole life is going to change and feeling like it would be a profound loss which I have guilt about to because I look back and think loss of loss of of certain things but also just moving into a new as an older person you we innate we embody our bodies, and we can feel the edges of life suddenly and we're so grateful for what we have, our health. And we can feel you know, the time so much but as a teenager as a young person as you were, it's just as In that last session, imagine, yeah, it really might be as much as 

Emmett de Monterey  35:03  

It really was. And I love your expression that we can feel the edges of life. I love that, you know, you're conscious of how much time is behind you, and how much time is left. And I, you know, I wrote one of the reasons for writing the book was, I wrote the book for the person that I was, to kind of it was the kind of book, you know, representation matters, and positive representation matters. And no, I couldn't read anything like that it didn't exist, I didn't have a narrative like this, the only book I've read about disability with my left foot by Christy Brown. And obviously, it's a very different context to mine very different time periods of mine, he also didn't have to grapple with with the understand that he was gay. So I, there's a lovely quote from the writer, Toni Morrison, where she goes, if you can't find the book that you want to read, then you must write it, it's quite challenging, because I'll never be as good a writer, she was 

Lauren Fenton  35:03  

It's a stunning book. 

Emmett de Monterey  35:09  

Thank you. But I wrote it for him. And I was really the story that I needed. But going back to what you were saying about, you know, our shifting relationships with our physical selves, I, I still sometimes have a difficult relationship with my body. And I would be disingenuous to say that it isn't an ongoing process. Because because I don't exist in isolation, none of us do. And the ableism that I experience, is just enormous. And it is disabling much more than my body is, you know, the things that society demonstrates about me, every time I go out of my front door, unfortunately, it's still a real factor in how I navigate my own identity. And it's something I'm really interested to hear about from the three of you about how, as, as parents of younger children, what your fears are around, around that as they grow.

Lauren Fenton  37:10  

I thought it was really interesting to me and your book that a lot of the ableism and prejudice that you are experiencing from outside of the home, really, as you go through the book, actually. And you move to this educational setting, that's more specialist education, actually, the prejudice and the the amount of prejudices you get there is homophobic, and it's like the narrative changes halfway through the book, as you're in that setting, and actually, suddenly, almost not disabled enough to fit into that world, if I can put it like that. But too queer to pretend otherwise. Although you do, talk about how you pretended to have a girlfriend and try to mask that, yeah, it really struck me when I was reading it that actually, a lot of the time when I think about Bea as my disabled child. I do think about her identity and who she is, you know, as a person broadly, but it always has that disability angle to it. And 

Emmett de Monterey  37:10  

it's always the lens isn't it through which your looking at something. 

Lauren Fenton  37:18  

Yeah, exactly. But actually her identity as she goes up. And we've talked about Andrew Solomon far from the tree on the on the podcast before and I know you read it amazing, but But it's like this assumed version of her identity, this assumed way that I think that she's going to see the world or feel the world or look at herself. It really it really challenged my assumptions about who she's going to be, are we going to be always going on about fighting for inclusion and fighting against ableism? Or is there going to be other strings to their identity, of course, there is, of course, there's going to be other strings to their identity that and I God hope that they aren't things that they're going to be bullied for or encounter prejudice for

Gemma Sherlock  38:57  

those other facets that will happen to our children as they grow up, that have nothing to do with their disability, or things that will become their own narrative and story. As with us finding your own sexuality, or discovering that your daughter has an eating disorder when she's 14, and she's making herself really sick, those things will happen to our children as disabled people as much as they haven't anyone else. And I didn't know for you, Did you always know that you were gay?

Emmett de Monterey  39:28  

No, unfortunately,

Gemma Sherlock  39:30  

It's not something that was talked about, sexuality and disability.

Emmett de Monterey  39:33  

It would be narratively much more easy if I had a defining moment where I could have gone that was it. But it was a much more gradual process for me. And I remember, I went to a very kind small state primary school near to where I lived. And as I was about to transition into my 11+ school, I remember sitting on the bench one day And and just seeing the boys play football and just wanting wanting to be part of that so much. And so my initial kind of sexual realisation was tied up I thought, again, my abelist internal narrative was tied up with what I thought was wanting to be normal. I idealised certain boys I knew. And I thought that that was simply because I wanted to be them. I wanted to climb trees, I wanted to kick balls, I wanted to I envied the way that they inhabited their bodies with such ease and confidence. Exactly, exactly. And actually, it took me a long time to recognise that there was a sexual component to that. And it wasn't just wanting to be them, it was something slightly more complicated. And as you touched on Gemma like, and then you went when I was about 14, or 15, and back in the disabled school, and beginning to understand that this wasn't a passing phase. And this was going to be part of my identity. It was so complicated, because as a disabled person, I was surrounded by other disabled people, but we weren't seen in any way we weren't encouraged to, to see ourselves in a sexual way. And the counsellor that I saw as part of my adjustment to the new educational setting, and also I write about it in the book, I developed quite our profound eating disorder for a short period of time. And my parents were splitting up. So it was it psychologically it was a complicated time. And she, she was a lovely person, and part of the reason why I decided to train subsequently, but she had found a manual in America of, basically, a sexual manual for people in wheelchairs with other disabilities too about how they could engage with each other in intimate ways. And this was, this was discovered and she was really castigated for it, because because the assumption was that any kind of sexuality wasn't part of our stories wasn't part of our identities at all. Which was really difficult, 

Gemma Sherlock  41:12  

dehumanising. 

Emmett de Monterey  41:21  

Yeah, absolutely. 

Lauren Fenton  41:58  

Othering completely. 

Emmett de Monterey  42:23  

Absolutely, that's exactly the right word. But I have to say it mirrored my own fears. Because I, you know, would occasionally buy kind of gay magazine on the way home. And only if the newsagent wasn't too crowded, and

Lauren Fenton  42:40  

yeah you state that in the book! Only if it wasn't too busy.

Emmett de Monterey  42:47  

Can I even reach like, but I used to get home and sort of read them. And I was terrified, quite frankly, because the images of gay life that I saw, were we're very much around nightlife and hedonism and physical perfection,

Gemma Sherlock  43:08  

I'm guessing there weren't many disabled people in these magazines in the 80s?

Emmett de Monterey  43:13  

I mean, it's quite different. It's quite different now. And luckily, we're in we're having a different moment around body positivity. And although I have to say I don't want to be falsely optimistic. I think there's still enormously long way to go. And I think yeah, it's I don't think it's, it's still an easy path to tread and I think, yeah, most people would still not deal with it. Which was another reason for writing the book. But I remember, you know, again, my lovely parents, I remember coming out to my mom finally, which was a surprise to absolutely nobody you know, because I've been drawing endless pictures of Elizabeth the first. I don't know why it was her but and also I was Yeah, exactly she was a queen!

Lauren Fenton  44:02  

I love that your mum got you that dressing gown in the book that you describe, the silk dressing gown,

Emmett de Monterey  44:10  

she didn't get it for me. I stole it

Lauren Fenton  44:11  

yes you stole it from her. Sorry.

Emmett de Monterey  44:12  

I didn't have a dressing gown. I didn't want a white towelling boring one, I didn't. I was feeling much more flamboyant. And I was this was really weird. I was hiding in plain sight. It was almost like I wanted somebody to guess I wanted somebody to ask me because at my first night in this boarding school I've got this amazing. Noel Coward doesn't have anything on this dressing gown. It was like the most garish, horrible kind of red silk thing with gold embroidered all over it. And the girl who would subsequently become my girlfriend, she wheeled up to me in her wheelchair. No, she gave me her name. In the book. I call her Rebecca. She gave me her name and she kind of said: "Oh, I like your dress". And I kind of looked at it, and I was like, I could actually make less of an impact if I was wearing a dress. You know, in my home environment, being myself was not a problem. Both my parents were incredibly liberal, and didn't tell my dad for a much longer time after I told my mum, I feel guilty about because all the assumptions I've made about my dad's reaction, actually, he was fine. And he just loved me. And also, he knew as well.

Rina Teslica  45:30  

He probably knew before you. 

Emmett de Monterey  45:33  

Yeah. But to go back to what I was saying earlier, which is kind of the crux of where I was going with it, I came out to her, and then I had to almost immediately go back in, because she was driving me back to school. So then back into hiding. And she said to me, Emmett, I'm so worried. She said, obviously, you've got no choice, you've got to express it, it's you. It's as much you as your disabled self. So you've got to express it. But I'm really worried that you're not going to find a partner that you're not going to find the love that I'd like you to find. And from what I know, I'd grown up with several kind of honorary gay uncles who were friends of hers, who were lovely role models to be around, but they weren't disabled. You know, they weren't. They weren't people I could follow in that way. And she just said up from what I know, from them, of the gay community, I'm, I'm really worried, because I don't necessarily think that you're going to be embraced

Gemma Sherlock  46:33  

controversial to say, but I think I definitely have this feeling sometimes just that, because he's at a mainstream school. And there are there aren't really any other kids with disabilities in the school, and he has friends. But a lot of those friendships are fostered and encouraged by their parents. And there's a definite feeling of, you need to play with Jasper, and they're so kind to him, and they embrace Him, and He loves to be with them. But I certainly have a small feeling of like gratitude for them for including Jasper, and I suppose I would I worry, let's say he was gay or straight whatever, that there may be a feeling of pity or that somebody needs to take care of him or, or not just that pure, immediate love that I think you have with your husband, it's a true love that you find. As a parent, I worry, we'll really find out will be that case. And I think if you were to turn around and say I'm gay, it's like, how is this gonna work out?

Emmett de Monterey  47:33  

Obviously, again, I can't speak for Jasper and I hope that he, I hope that all your children are able to navigate the lands. I mean, it's a long time since the period of time that I write about in the book. So hopefully, societally we've moved on quite a lot, but and I hope that all your children are able to find really rich experiences and be able to integrate into the world in a slightly easier way than I thought that I could. But I have to be honest, I'm slightly pessimistic about that still. Because I think there's a great deal of stigma still, and conscious and unconscious bias towards the disabled, I think there's an enormous amount of fear, and not distaste, maybe that's too strong a word. But I think, given the fact that the disabled community makes up so much of the population, you know, in terms of still not nearly visible enough, still not nearly accepted enough, still not represented enough. And actually, I think it was scope, the disability, charity, and I'm gonna get my numbers wrong, I'm terrible

Lauren Fenton  48:47  

we'll put it in the show notes anyway. We can fact check.

Emmett de Monterey  48:50  

They conducted a campaign called 'let's end the awkward', where they did a series of YouTube videos around, you know, ways in which the general public should and could approach the disabled and the language that they, they, you know, basically things to do and not do. And as part of that, I mean, I found it a bit difficult because each, it supposes that, that all disabled people are the same, and that we're coming monolithic, but for the purposes of a public conversation, you have to kind of be a bit more. It's difficult because there are as many ways to be disabled as there are people in the world right. You know, I was you know, when

Gemma Sherlock  49:34  

You use the word disabled some people hate that word, it's difficult.

Emmett de Monterey  49:39  

Personally, I love the word word disabled, I I really find it empowering or by and disabled. I hate it when people say differently abled or special or, you know, just be but that's me, you know, I want to be thought of in in a very basic, not basic way that sounds awful. Oh, yes, just just call me whatever. Well, first of all call me Emmett, because that's my name. If you if you have to refer to me. 

Gemma Sherlock  50:12  

Next book title? 

Emmett de Monterey  50:12  

But if you... I never want to write about myself ever again. Novel next time thanks. But yeah, I mean, again, I don't want to speak for anyone else. But I really I really appreciate the word disabled. And I know a lot of other activists do as well. I don't find it disempowering. It's just factual. It's, you know, language is difficult language is constantly evolving. But yeah, I just find it just the most helpful way to describe what I am. Yeah,

Lauren Fenton  50:43  

a lot of the book talks about hiding and shame and kind of grappling with who you are. And you know, we call this episode, owning your story. It feels like it took you a long time to get comfortable with your own identity 

Emmett de Monterey  50:57  

a hugely long time. Yeah, absolutely. I'd say it's still a work in progress.

Lauren Fenton  51:01  

what's helped the most for you to feel comfortable in your own skin to be comfortable with who you are, and own those labels and your own identity?

Emmett de Monterey  51:13  

I think to be honest, I had a real realisation I write about this in the book, very sadly, quite a number of the people at my school. And one of the boys who was actually one of the boys that bullied me, he was a haemophiliac. And he died of AIDS because he got an infected blood transfusion or the fact that clotting factor that was used. And I won't pretend that we were friends. We weren't although we had a sort of rapprochement later in the book. But I went to his funeral, I wasn't going to go. But then I thought, you know, in a weird way, this man, this boy has been a really huge part of your life. So you have to go and pay your respects to him, you have to go and honour him. So I went. And I remember coming back from the crematorium in the headmaster's car, and I just thought, and, and I, it took a long time, it wasn't it wasn't an instantaneous moment of acceptance. And as I say, I think it's still a work in progress some days. But I thought your life might not look like what you wanted to. But it's the only one you've got it. You know, the title of my book, go the way your blood beats. James Baldwin says, If you don't go the way your blood beats, you won't live some other life, you won't live any life at all. So the onus was on me then to make the most of my experience. And I really felt like, you know, however difficult my life is, I have the privilege of still being here. And actually, I've got to, I've got to, I've got to grab it, I've got to embrace it. And actually, you know, I can't keep hiding. I can't keep apologising for myself, I can't keep being so uncomfortable. Because I'm, I'm missing it, you know, and life is wonderful. Life is really wonderful. And I know, you know, we spoke together before I came here today. And one of the things that struck me so much, and I've really thought about things is how much you know, your relationships have changed by being the mothers of disabled children, but how rich you find that, and how important it is, for all of you. And it's not the problem that society often likes to think, you know, disability is only thought of in terms of being a problematic thing, or, in a worst case scenario, a tragic outcome. And actually, you know, life can still be incredibly rich.

Rina Teslica  53:49  

Those exact emotions are exactly what I'm sure the three of us have gone through, kind of, it's that grief process, but then it's like total acceptance and like, this is great, it can be great. And

Lauren Fenton  54:02  

life's messy, right? Life's fucking messy, and it can be messy at so many points in your life.

Gemma Sherlock  54:08  

Thank you for saying that, because I think we could all do and they could do so. I just realising what a privilege is, whether you have a disability or not. We all have flaws. We all have shit. Everybody has, you know, challenges and yeah, it's a privilege to be here isn't it.

Emmett de Monterey  54:28  

It really, really is and I was shaving this morning ready to come here. And I noticed that more of my hair is going through and it's a lot thinner than it was and it's probably departing in the next.

Lauren Fenton  54:45  

But that's a whole other grieving process.

Emmett de Monterey  54:48  

This is the departure lounge for my Jewish hair. 

Emmett de Monterey  54:56  

you know, I really feel alright about it because because I'm here, and I've written going back to what you were saying about reclaiming your narrative and reframing, I've written my book, I have a husband, I have friends, I get asked to do lovely things like this, like, I have grey hair, I have a bit of a paunch, you know.

Lauren Fenton  55:19  

Don't we all?

Gemma Sherlock  55:22  

It's well earned!

Lauren Fenton  55:23  

Exactly!

Emmett de Monterey  55:24  

That's how, that's how far I've travelled, you know, and I used to not be able to look at my scars, and now I look at them in the shower. And I can't honestly say that they filled me with delight. But I have so much respect for how far I've come. And so much more compassion for my body. And for myself, I mean, the language around disability has evolved, thank goodness. But yeah, I was seen as a problem as a young child. And I absorbed that wholly, partially because of the surgical process, and partially because of what was just in the society around me. I'm still regarded as a problem by some people. And, and I know that many people, you know, on a homophobic level, think that what I do is revolting. That's one of the reasons why I was quite keen to get married and accept that other people, it's not a choice that they need to make, or it's not something that fits them. But I really wanted to get married, because I'm very aware that in a lot of countries around the world, people who may want to get married can't, and people are living in fear of being discovered, and in some cases, imprisoned or worse for simply for being who they are. So I, the day when I got married to my husband was really, it was really profound for me in in a way that I hadn't expected to just be able to visibly say, Yeah, freedom, exactly. 

Emmett de Monterey  57:05  

So I suppose the question that I'd really like to ask the three of you is, did you think about disability as my identity and the disabled community before becoming parents and experiencing it? And what's your relationship like now to the notion of disability in your own children? And that's a big, kind of a big question. So

Lauren Fenton  57:28  

that's a really good question. I think that disability hadn't crossed my mind at all. My older child is non disabled, neurotypical. And she was under one and we decided, hey, whilst we're in nappy mode, let's go again. And I know that not everybody, you know, can fall pregnant as easily and I, and all of my pregnancy, I was just grappling with oh I'm gonna have two children. And I was feeling this like guilt for how am I going to share my time between the two children, and I had this tiny little Olivia, who was still a baby. And all I was thinking about was that, and I wasn't thinking about, quite frankly, I wasn't really thinking about who Bea was going to be. 

Gemma Sherlock  58:15  

I always think the decision to have a child is is so selfish, oh, it's all about us. And then soon as they arrive, it's the most selfless thing you'll ever do, and that's the shock of it

Lauren Fenton  58:25  

it is completely change it and yeah, I think growing up, I didn't see a lot of disability. It was not something that was really in my consciousness, if I'm honest. So it was a shock. My instincts, all my reaction, as a parent was, of course, I'm gonna love this child, whoever they are. But it was just a whole shitload of unknowns of what their life would be what the future would hold. Would they ever be able to do this or that and, you know, it just feels a lot of that was about me. And my picture of,

Emmett de Monterey  59:01  

but that's legitiamte too, I mean, that's one of the lovely things about the purpose of this podcast is like, to the whole family. Yeah. So your reality does change and it does affect your life. It's a collective experience it really anyway. Sorry,

Lauren Fenton  59:18  

no, no, it's so true. And I think I was in denial for a long time. I've talked about that on the podcast before it was a I'm very organised, and I'm a planner, and I like to know what's going to happen tomorrow, 12 months, 10 years time, I have like, big plans. So this diagnosis that Bea got, and the fact I didn't know anything about 18Q deletion or what that meant, or what her childhood was going to look like a what her adulthood was going to look like, really kind of messed with that plan. It took me a long time to realise that I didn't need to have a fucking plan. And, and as Bea got older, you know, just as a baby still, I think, and you get to know your child and our identity, you meet other people and other families and you see other children at hospitals and you realise this isn't fucking the end of the world. I have a beautiful little girl who's going to be who she is going to be. And she is not just disabled. She's cheeky. She's a flirt. She She charms, the pants of everybody she's around, I think when she was about two, we were in a Carluccios. And somebody came up to us behind me and was like, I just want to say your kids gorgous. Yes. And so thank you very much, sort of chatting to them. They walked away. I was with my father. And he said, That guy really looked like Boy George. And I was like, Dad, it was Boy George. You know, whereas most people would go and like bother Boy George in the restaurant, he'd come over to talk to Bea because Bea had flirted and lured him in? Yeah, this is Bea and yeah, it was beautiful. I'm not going to pretend that I don't have moments of I wish Beas life was going was easier. I wish that she could communicate better with me that I knew what was going on inside her head. Like, I want to climb inside her head and figure out sometimes what she's really thinking or feeling. But God I think Gemma referred to earlier, I think I'm, again, it's but back to me, but and I think I'm a better person for having more of an understanding and an introduction and appreciation of disability in all of its forms. And it's amazing, not caring about the fucking shit that some parents care about the back, trivial crap, 

Emmett de Monterey  1:01:51  

because in some ways I can again, I can only speak for myself, but it does liberate when I finally became a bit more confident and a bit less a bit more able to reject the ableist narrative that I've been, it kind of allows you a bit more freedom to write your own script. Because if you think well, if society is not going to accept me so readily anyway, what does it What does those values matter? It allows you to question those values.

Lauren Fenton  1:02:18  

fuck em. So I think I think, you know, it's a very long winded answer to your question, but I feel like I've, yeah, I've become a better person, I've learned a lot about myself, and I'm still fucking learning and trying to navigate this world with Bea and figure out who she is and who she wants to be and how she wants to tell her story. And

Rina Teslica  1:02:40  

I'm very similar to yours to you. I had no concept of the disabled community, I wasn't exposed at all. I lived in a very, I my parents were very much the perfect family and everything has to be perfect. So when Lua was born, like she was a big black mark on our life and what we had imagined what I had imagined my parents, my partner, what our lives were going to look like. So for me, it was a big shock to the system. And it was a full on like grieving process. But I think having Lua has like, brought me back down to earth. I think I was very like floaty and like, Oh, yes. And everything's great and lalalaah. And she's kind of showing me what life is actually like life can be shit, that doesn't mean that it's shit, it just can be shit in that moment. In the beginning, we just didn't know whether she'd survive or not. So I've just appreciate life, because it can be gone in an instant, without no concept of what could happen in the future, or none of that. And I think that's also why I just accept her fully for who she is. I have no preconceived notions or ideas of what I want her to be, which is how I went throughout my try imagine

Emmett de Monterey  1:03:58  

I mean, correct me if I'm wrong, because I don't want to, but that must be difficult to to kind of jettison your your vision of what life what you were talking about, just now, your vision of what life could and should be like when you're pregnant. And I'm sure you kind of fantasise about what you're going to do. Yep. And then you have to kind of reconfigurable all that and jettison some of it and embrace it. So that must be really,

Rina Teslica  1:04:24  

it was it was difficult. I think that first I think it was difficult until I got to the point where I accepted her. And I think, because my partner he accepted her immediately, like the day she was born, we obviously knew that something was wrong. And he was like, okay, and like got on with it while I was like what's the fuck is going on? 

Emmett de Monterey  1:04:43  

I find that quite moving, you know, that there was just that instantaneous kind of this is my daughter. This is my child. 

Rina Teslica  1:04:49  

Yeah. Like no, no issues with what was going on. And I found that really difficult, but I think he just had no concept of like and we were young, he was 28. I don't think he like really thought about it much, or like hadn't been exposed to children very much. He didn't have that. Well, I did I had loads of cousins who had kids, and I loved children. So I obviously had planned something in my head where he had, he was like, Yeah, I'm gonna be a dad. Oh, she's born with a disability. Okay, we move. Let's go. Let's, you know, what can we do? So, 

Emmett de Monterey  1:05:24  

Sounds like good people? 

Rina Teslica  1:05:25  

Yeah, he's great. I have to say he is really great. But I think I've struggled with the fact that he wasn't grieving like I was.

Emmett de Monterey  1:05:34  

Oh, that's... that's interesting. So you both had very different experiences totally different. So that did that mean that you couldn't support each other?

Rina Teslica  1:05:43  

No, I, he was very, very patient with me. And he let me express my deep unhappiness for the for the, you know, for that first year, and I didn't bond with her because I was terrified, she was gonna die. So I was like, let me just not for my own healing, let me not bond with her for self protection all the way until she got the all clear. After seven months, we brought her home. And then I was like, Okay, fine. And he kind of let me deal with that and was like, look, it's fine. He was so so positive, which I found incredibly frustrating, because sometimes you need someone to be in the shit with you feel all the negatives, but 

Emmett de Monterey  1:06:22  

or at least allow them? 

Rina Teslica  1:06:24  

Yeah, he was just like, "No, this is how it's gonna be. This is how she is. And we just have to, like, get on with it and give her as much support as she needs." And I think his positivity really, like propped me up. Because I think when you're in a dark place, you only see that dark way. So to have somebody else's perspective in your ear going, actually, no, why don't you look at it like this, it could be like this, yes, it's shit, but also, and it's that but also, that really helped me to kind of look at it in a different way. And that's where I'm at now. And I think I just, I don't care about her disability, I just don't give a shit about it. Like, it's part of her. But it's not a defining thing. 

Emmett de Monterey  1:07:10  

It's an intrinsic part of who she is,

Rina Teslica  1:07:12  

like something I just don't see anymore. You know, and it's liberating. And I hope that she also doesn't. It doesn't affect her when she's, I think, because she's so delayed, in terms of like, her cognitive understanding of what she is, you know, I don't think she sees Lua is on this planet at the moment. And she thinks everything is here for her. So she like lives through life as if like, we're all pawns in her life. So I think it'll take 

Lauren Fenton  1:07:42  

she's such a diva. I love her. 

Rina Teslica  1:07:45  

I just she just thinks that we're all here for her entertainment. 

Lauren Fenton  1:07:48  

We kind of are to be fair Rina?

Rina Teslica  1:07:50  

That's how I live my life. I am just here purely to please her so

Emmett de Monterey  1:07:56  

yeah, you have to please yourself too at moments.

Rina Teslica  1:07:58  

I mean, please didn't have pleases me. I mean, if she's not happy, she will really let us know. So yep, I yeah, I just love her. She's the thing that's made me me and I'm forever grateful to have her. Yeah,

Emmett de Monterey  1:08:16  

that's really it's lovely to hear. And I just I'm really struck by similarly to my parents who are advocates, you are for your children. That thing in the Andrew Solomon book about loving the children have, rather than longed for reproductions of yourself. I love that idea that you have to take a moment to readjust. And then if you can, I'm not saying that everyone can. But love the person that you have.

Gemma Sherlock  1:08:44  

I think I've spoken about this before in that Jasper was just so ill when he was born for such a long period of time. We just felt like we're firefighting. Will he be alive tomorrow? Will he be like later on. And I remember having this conversation with Ro in the very early days, like, just let him survive, he'll be you know, whoever he is, we were just he was a long awaited baby. We'd gone through a lot of IVF we just couldn't wait to meet this person. And then it was just hoping that he'll survive and disability, you know, with the best possible outcome. In fact, if he walked in here, I've said this also before on the podcast today, you might not even notice his disability. That's That's how fortunate really he has been from where he started. When we were given his diagnosis, for example, I think they considered it would be a significant moment for us. You sit in the room and you're carefully given this diagnosis, but it just felt completely arbitrary because our babies alive is wonderful human being is completely irrelevant. And I think maybe it took us some time to start to realise that that part had finished that he was alive and that he was flourishing and that He did have needs extra needs that needed to be met. Obviously, we were meeting those needs, but that disability would form part of who he was. Everything he did was just like, wow, win win. Wow, amazing. And I remember meeting you, Lauren for the first time. And I can't remember if we spoke about this before, so I have I apologise. But we were in a physio session, and Bea, and Jasper, we're just learning to walk. Yeah, I'm shuffling, sort of using the bars to shuffle along. And Lauren and I were kind of working each other out.

Lauren Fenton  1:10:33  

flirting. friendship flirting.

Gemma Sherlock  1:10:36  

I just felt I remember how I felt in that moment. I just felt so elated that there he was, and he was doing, I didn't really even care what the outcome was. And I don't know if you are in a different headspace. At that point. I don't know where you were at that time. I don't know, if we really spoken.

Lauren Fenton  1:10:50  

I think I was in it still. She's gonna walk, she's gonna walk. If I have to get her physio, like three times a week she's going to walk and because that's going to be her story. And I, I don't feel good about having felt like that, or thought like that. And that was my ableism,

Emmett de Monterey  1:11:09  

that was my ableism to have, like, walking to me was the goal. Yeah, the absolute goal. And it was actually my mother who said, well, actually, you know, that's, that's not necessarily the only way to have a fulfilling life. And it's, it took me a very, very long time. To that, to catch up to that idea to understand it really. 

Gemma Sherlock  1:11:32  

Did your mom have friends who were disabled?

Emmett de Monterey  1:11:37  

very similar to what you're saying. It wasn't a language that they knew. And it was the first time they had heard the words Celerbral Palsy or knew what it was, was when they were told that that was what I had.

Lauren Fenton  1:11:51  

On the subject of therapy, like sorry to kind of rewind, but you You talk a lot in the book outside of the surgery, but about the physios in that original physio that drew smiley faces on your knees? Yeah. How? Looking back? How was that experience for you? I guess there were good therapists and bad therapists. But was it always kind of creating that additional ablest narrative that there was something wrong? Was it traumatising for you? Or was it sometimes fun?

Emmett de Monterey  1:12:22  

I really, it's difficult because I the the physiotherapist that I get interacted with, there were many that were very good, many that were very caring. And obviously, I needed it not in an ableist way, but just saying I needed it to help me move through the world. I did really resent it, as I as I began to understand how long I would need it for and, and it was, it was time out of my day it was and also my friends didn't I wasn't in special education at this point. And so none of my friends had to do it. And it could sometimes feel quite punitive, it could sometimes feel quite punishing. And as you said, Lauren, it gives you the idea that you're somehow broken, or you need to be fixed or that, you know, worst case scenario that it's your fault. And we talked about earlier about, you know, ableism having a moral moral dimension. And the idea that, yeah, somehow you've fallen short, or you're bad, or I think think thankfully, we've moved on as a culture. But it really was the Stick It was still it's difficult, because the kindness that I received was huge. And the time the people's time that I received was massive. But at the same time, I really resented having to do it.

Lauren Fenton  1:13:49  

It's sort of ridiculous expectations that you put on life or on people in your life. We already talked about it, having a baby, you have all these expectations. And it's learning to let go of those expectations and see them for who they are on and what they're going to be what's much more important and it's taken me a long time to realise is nurturing her who she is and what and helping her to like assert who she is and, and be who she is and enjoying that and having fun and making childhood less about fucking therapy and achieving milestones and much more about her mad sense of humour whenever she faults blaming somebody else. And you know, like,

Emmett de Monterey  1:14:36  

and also as you're saying, that's much more to do with interrogating the medical model and the whole point of this podcast and what is normal, let's interrogate what that looks like. And let's, you know, on a case by case child by child, person by person, basis, let's and I love what you said Rina about, like, the way that it kind of does pressure protection I was kind of gradually released for you

Rina Teslica  1:15:03  

massively. It's so liberating when you just I think Louis helped, because I think it's just her personality to take her sweet ass time to do anything. So I went in with.. Yeah, she has to walk. And then it's like, yeah, I will walk when I'm four. And when I decide one day to just walk, and I think I had pushed her and I had that whole concept of like, you're gonna have to walk because I know that you can kind of think and now, because she's shown us so many times that I will only do shit when I fucking want to do it. I don't give a fuck how much like therapies, you take me to win how much you you know, I will do it. When I want and Aber and I have just let go. You just gotta go there pace. Just totally let go. And she surprised us last year when she started to feed orally, on like, it just happened with no input from us. Yeah, so now I'm like, I just have no expectations for you at all 

Gemma Sherlock  1:16:08  

take your foot off the gas

Lauren Fenton  1:16:09  

She'll be and do what she wants, when she wants to do it

Emmett de Monterey  1:16:12  

Oh how lovely of you to share your stories with me. And it is really nice for me, or one of the reasons I wanted to come on here today is to see the story from your experiences from the other side of the equation, if you like, and I really thank you for telling me telling me stories and sharing that with me. And being such you know, being such brilliant advocates for your children because because you are and, and rather like my parents, you know, it's brilliant to have parents who, as Andrew Solomon says rise to the challenge of having children that they have and enjoying the challenge. 

Rina Teslica  1:16:57  

Thank you

Lauren Fenton  1:16:58  

Ditto. Telling your story. Thank you. It's wonderful and I absolutely loved the book and encourage everybody listening to this podcast go and buy it you don't need to sell it because I'm gonna sell it for you out on the sixth of July, 

Emmett de Monterey  1:17:16  

6th July yeah from Penguin Viking 

Lauren Fenton  1:17:19  

right and it's called 

Emmett de Monterey  1:17:20  

Go the Way your Blood Beats. 

Lauren Fenton  1:17:21  

Thank you. Go the way your Blood Beats. Beautiful story. But as we always do, we want to end on you telling us what your fucking normal is,

Emmett de Monterey  1:17:32  

Right. He's not gonna like this, but it's the truth. My fucking normal although not normal fucking for the homophobes out there, not normal fucking is my husband, my lovely, lovely husband, who we got married last year. And it was very moving to me because I'm very mindful that in this world currently, lots of gay people don't have the opportunity or the or the right to get married. And so it felt quite important for me to do that. And yeah, I just looking at him that day. I just, I was delighted. I was absolutely delighted. And it was something that in my loneliest teenage moments, I never thought I would have access to just that. I was being interviewed the other day, and I said, apart from having written a book, my life is blissfully ordinary. You know, I'm in midlife, and I cherish the ordinariness of my life. The kind of ordinariness that I never imagined I would have, so that's my fucking Normal.

Gemma Sherlock  1:18:45  

Your fucking normal is blissful ordinary 

Rina Teslica  1:18:48  

blissfully ordinary.

Lauren Fenton  1:18:50  

I love that. Thank you so much Emmett. It's been so great to meet you properly. 

Lauren Fenton  1:18:57  

Thank you so much for listening to the bucking normal podcast. We love making this podcast. Yes, we do. We are part of a much bigger team, almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences.

Rina Teslica  1:19:18  

So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at fucky. Animal podcast.com That's f k ing normal podcast.com you can join us on Facebook, and on Instagram at fucking normal underscore podcast. That's f k ing normal underscore podcast. You can get all the links and more information in the show notes below.

Lauren Fenton  1:19:42  

So thanks so much for listening all the way to the end. We'll see you next time. Byeee "mwaa" [kissing sound]

Transcribed by https://otter.ai

Epiosde 11: Uncertainty with miriam elia

~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Lauren Fenton  0:16  

This is the fucking normal podcast, the cheers, tears and Friday night beers of parenting disabled children.

Rina Teslica  0:24  

I'm Rina.

Lauren Fenton  0:25  

and I'm Lauren.

Rina Teslica  0:26  

And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories, and chat about the things that we've learned and are still learning.

Lauren Fenton  0:40  

Prepare to sometimes laugh, sometimes cry, but hopefully leave with a shot of optimism in your arm. And don't forget we are talking from a parent's perspective, we would never presume to talk on behalf of a disabled child or adult. So expect bad language, and quite frankly, some brutal honesty.

Rina Teslica  1:00  

Because really, what the fuck is normal anyway? Me.

On today's episode, we will be tackling the idea of uncertainty, life is full of uncertainty, but having a child with disabilities can make that feel like an understatement. Some more common syndromes bring some predictability. But largely having a child with special needs is filled to the brim with uncertainty. And we're talking uncertainty on so many levels from that pre diagnosis anxiety where you have no idea what's going on to the post diagnosis cloud of what on earth does this all mean? Then you've got the day to day unknowns and curveballs and a big fat slap to the face be that medical or even developmental? But ultimately, the question is, what does this all mean for your child? What does that future look like? And importantly, how do we as parents learn to roll with the punches and live with so much uncertainty? So with that in mind, we'd like to introduce you to our lovely guest.

Lauren Fenton  2:08  

So today our guest is Miriam Elia. Miriam is a comedian artist broadcaster and mum to two boys. Sid who's six and Natty, who's three and a half. Sid has a rare form of Leigh syndrome. It affects him in many ways. It's a mitochondrial and neurodegenerative condition and may significantly impact upon his balance muscle and speech. Sid is a beautiful boy. He's a happy soul who loves train sets and cars, and has definitely inherited his mother's sense of humour. When I asked Miriam if she took on the topic of this episode, she said 'uncertainty is my speciality!'. And I look forward to digging into that in more detail, probably sharing some dark humour and wisecracks with our lovely guest. Miriam, welcome to the podcast.

Miriam Elia  3:03  

Thank you.

Lauren Fenton  3:04  

And before we start, I just wanted to say congratulations to sit on his success this week got a big milestone.

Miriam Elia  3:10  

My mind has exploded and I'm crying with light. And everyone like talk to you about it doesn't really just doesn't get.

Rina Teslica  3:20  

Tell us what has happened. 

Miriam Elia  3:22  

So basically, my son has toilet trained himself after six years. Obviously, when we talk about uncertainty, I was picturing that I would have to be changing him forever. I did not think he could do it. And and he did it. Yeah, I just wanted someone to celebrate. Oh, yeah, it was

Lauren Fenton  3:47  

A shame we're not in person with drinks today,

Miriam Elia  3:51  

Yeah like going to have a beer, but it just happened. It just clicked. I think on my part, I had to put more effort in because I felt a bit like resigned that you know, tried so like so long that you you just kind of think maybe it's just one of those things, isn't it and then one day he got up and I said "do you need a piss?" 

Lauren Fenton  4:21  

Miriam was nodding her head for the listerners of the podcast.

Miriam Elia  4:23  

and he just walked in a taxic way to the toilet. I pulled his trousers down and he did a wee. And I gave him a kiss give him a hug, gave him a chocolate. I made it into a big deal. And obviously then my younger one goes and does a piss he's been toilet trained for years and he goes well I want a chocolate, I did a wee and I'm like yeah, it's not special when you do it.

Rina Teslica  4:47  

Oh, that's so cute.

Lauren Fenton  4:48  

That's amazing news. 

Miriam Elia  4:50  

And then and then which so this weekend I was like right... It's okay when you're at home and they can have an accident you can clean up but I thought you know if you're gonna go out. Because I drag him around everywhere. You know, we go to like three museums in one weekend and adventure parks and we do a lot. And I thought, well, once he wets himself out and about, but he didn't look wherever we went. We went gardening centre, I said, do you need a wee, he put his hand up, took him to the toilets, did a wee. He was dry for two days. So I'm just like,

Rina Teslica  5:25  

That is the best news.

Miriam Elia  5:28

Yeah, the only thing is he's not telling me I just have to I'm just using a clock and like every two hour or two you know, like, do you wanna but just it's control, isn't it? It's controlling. 

Lauren Fenton  5:37  

Completely. He's having to hold in. That's what Bea's like, I have to take her. She will not tell me. She's 7 now, she will still I just have to keep an eye and I feel like I know her bodily functions better than she does. But you know, like, but we'll get there. It's almost I don't know, it's so much. Yeah, it's amazing. 

Miriam Elia  6:01  

I put the nappies in the bin the other day, like I'm not going back.

Lauren Fenton  6:08  

Ahh liberation!

Miriam Elia  6:09  

Six years. It's amazing. 

Rina Teslica  6:12  

So why don't you Miriam, tell us your story, yours and Sid's story from pregnancy until he came into this world.

Miriam Elia  6:23  

I'm from London. I grew up in Muswell Hill, my parents were both artists. And then they had me as an artwork. And I turned out to be a real person. Okay to cut a long strory... I mean it. The story of Sid ties in with my whole family history, because obviously, before I had kids, you never think anything like this would ever happen to it. You know, that's part of having kids, you do that test at the beginning, you go oh everything is fine. So, basically my mum's mum's family. We're Lithuanian Jews that went to Wales in the 19th century. And there was this, they call it the curse of the family like the brain disorder. And it was it went back a long, long way. So there's a lot of children that got it. But mainly, weirdly enough, it usually came out in people of our age, that that right?

My grandma had two brothers, who were doctors doing very well in their life. And suddenly they lost slowly the ability to speak, to walk. And it just got worse and worse. And I think it killed both of them eventually. But they would develop that in their 40s and so there was something in the family but it was very uncommon to think of a child having it, so obviously that conversation was just never had. So yeah, me and Russell, my partner, my husband now had our first child go through the normal pregnancy there was nothing unusual about pregnancy. Sid was born and he looked angelic and very, very, very beautiful. Which this is why the story of Sid is confusing because he didn't look there was nothing obviously different about Sid when he was born. In fact, people will come up to me in the street and "oh, what a beautiful baby. Oh my god here. Have some money for the baby. Oh, bless this baby" he had this shockingly blonde hair and blue eyes and is like very, very pretty. A real shock to me because obviously my my father is, is Middle Eastern. Well, I'm fully Jewish. There's no blondes in my family. So it was you know, I was like, "Well, it's my son. My son has taken after his father." Anyway. Basically, when Sid was finally diagnosed after this kind of car crash of the first two years. I call it a car crash because I had literally no idea what was going on. This beautiful child who just couldn't walk couldn't speak, was falling all over the place. Went deaf, had a stroke. I was like, "What's wrong with Sid?" And finally they took my blood sample my mum's blood sample, and, and Sid and they found this kind of defective mitochondria. And because it came from my mum and me, we now realise it was it was this, the family... this thing that was in my mum's family. So it was a huge shock. For me, and for my mum, and for everyone really?

Because yeah, so basically it helped explain what was wrong with my grandmother, who had also mitochondrial disease, but a lower level so she didn't become disabled, but she was because it's to do with like a lack of energy. You can become like chronically fatigued and not able to function basically just like lying in bed, and chain smoking. And that screwed up my mum and her siblings because they thought that their mother just didn't care about them. So it's quite quite a sad story, a lot of the punk movement started in my grandparents house because my uncle was one of the key people in the punk movement. And he was always mocking my grandma. But obviously, no one knew that she was suffering from the same disease as her brothers but a slightly different way. So yeah, when we found out when Sid was diagnosed all about this mutation, my mum just kind of had a I don't know what to say. She, you imagine, imagine perceiving someone a certain way, your whole life and then realising that they were actually just sick. 

Rina Teslica  10:56  

But it must have been like, yeah, like a light bulb moment, but also, kind of things probably went into place like a jigsaw puzzle, like, ah,

Miriam Elia  11:06  

Yeah, it was exactly that. It was exactly that. And you saw my grandfather, like their marriage fell apart, because he resented her for being lazy and schizophrenic and mad and all this, you know, because when they met, she still had energy. They used to go on walking holidays, but she had four kids, and the mitochondria just declines with age. So the Leigh syndrome is like, it's like a balance. Sid was born with 97%. So it was just happened from day one. But if you're if you were born with like, 70/30, for example, you'd be fine up until like something age and then. So in a way, yeah, it was like a jigsaw. I think it was like a beautiful thing in a way. It was like an answer.

Lauren Fenton  11:50  

Yeah. Yeah. Your whole family, I guess has got clarity and understanding from this. 

Miriam Elia  11:57  

And we also found that, so basically, my grandmother's side of the family, a lot of them still live in Wales. And they were all petrified that they would get this disease. My mum had to call them and say it can never happen to any of you, because you're all on the male line. It can only run through the woman. Gosh, that was like they you know, and they've been for years trying to figure out what it was sid was like, it's, it's, it's tragic, but it did offer closure, I think, in a big way. 

Rina Teslica  12:33  

So you waited two years to get a diagnosis?

Miriam Elia  12:38  

Well, I think no one took me seriously for a long time because he people are very shallow. He's very beautiful. Yeah, and no one no one would accept that he was disabled. I was continually told, "Oh, he's fine. You'll get there. They're all different." and all that stuff. And because it's your first child, you have no idea what what it's like, and I wanted to believe that and then the turning point. I mean, I was already doing loads of physiotherapy with him and stuff to get him to walk. And I thought, this is a bit weird. You shouldn't have to do physiotherapy to get someone to walk. Yeah, but I was still believing oh he'll be fine. he'll be fine. You know. 

And then I think the turning point was when we went on holiday to Tenerife, and I was I was nine months pregnant with Natty and and then he got flu. So children with mitochondrial is much like most children with disabilities, if they get ill, it's like, boom. Yeah, yeah. Not like normal ill, and he got flu. And I just let him watch telly and just sort of lounge about. And then he kind of got better after four or five days of a high fever, and he started eating again and stuff. But he lost, I suddenly realised he'd had a complete stroke. So he just couldn't move at all. Oh, my gosh. So when we got back to London, I think yeah, this was when me it was really trying for me and Russell Russell didn't want to think and I was like, this is really wrong. This is not right. And that's when we we got him into Great Ormond Street and, and also I was faced with this like, gun point scenario of my other son would possibly have it too. And I was so far pregnant, I was like, Oh my God. what am i gonna do? But I decided to go with what makes me happy and that's my kids. So rather than whatever nasty thing could happen, so once he was diagnosed, they were able to give him things that help people with Leigh Syndrome. So various like coenzymes 

and within three months of safe had a complete stroke, couldn't move, couldn't even crawl. We start giving these Coenzyme Q 10, change his diet, he was walking within three months, she has something he'd never achieved 

Lauren Fenton  15:06  

Wow. Wow. 

Miriam Elia  15:08  

So yeah, that was that was an and also that was just after Natty was born. So I was like, very, very grateful for that. 

Rina Teslica  15:15  

How did you deal? Because obviously, you had your mother side with all of these kind of symptoms. So and then you had Sid who had similar symptoms, but not all of them. So there was loads of uncertainty. How did you deal with that?

Miriam Elia  15:39  

Um, I don't know, I'm a very positive person. I have a great sense of humour. And I, I don't... I've only been really, really depressed once. And I vowed to myself that after that I was very, very depressed that one time, I think it was in my 20s that I would never do it again. I just try and make Sid happy basically.

Lauren Fenton  16:05  

Yeah, I think that's the thing I I've definitely struggled with. That just living in the moment and just thinking, because I'm historically historically get over myself. I am traditionally a a planner, like I like to plan, plan, plan, plan plan. Control. So and then you decide to go stop fucking planning and start just living. I like, I've seen that in you in your things that you post about, like breaking into playgrounds in lockdown.

Miriam Elia  16:36  

I did that. Yeah, I mean, I understand that lockdown was different for everyone. I don't judge anyone on how they react to it. But to me, I was gonna I'm gonna do the complete fucking opposite. I'm not, I'm not going to be scared. The only thing you should do is be happy and healthy and enjoy the day that you're given. And, I mean, I maybe got that from the Bible, because I was raised quite Jewish. That's nothing to do with it. It was just my instinctive reaction. And he'd just started walking as well. So I just kind of wanted him to, like, really push on with that. So I dragged him out every day and forced him to walk as much as he could. He was like, oh my god, now it's great. But then he was falling like, it was like someone had just he imagine some you have to look after someone has just come out of a pub. And they're just falling all over the place because they've drunk too much but all the time. So he was just like, trying to like enjoy everything and interact with everything and run free and I had to kind of run after and I did a lot at the beginning. I did a lot of the "Oh no, I'll help you if you fall over," but then I thought that's, I can't do that. I've got baby to look after as well. So I just let him fall over loads.

Lauren Fenton  18:01  

Has his balance improved as a consequence of your unusual therapeutic method?

Miriam Elia  18:07  

Much better, really. Such and he come on covered in bruises. And my mother in law thought I was abusive, like, "oh my gosh, my poor Sid" and I was like, "no, no, no, it's good for him. It's fine. He's gonna be fine. He has to go through this." We all have, you know, but she wouldn't let go of his hand. And I always say, why don't when you don't hold his hand because he needs to use his because his brain is damaged where the balance is. So he needs to figure it out himself.

Lauren Fenton  18:34  

Find his centre of balance. Yeah. 

Miriam Elia  18:37  

But he's such a great kid, Sid like, he doesn't give me any grief. Like he's, he's, he's great. And he tries and tries and tries. And he gets there in the end. He can walk for miles literally, like he fought he uses his hands like so that's because I realised he had a lot of stamina. It wasn't that he didn't have stamina he did but he just he couldn't deal with a big open space. So if you were like in a museum or in indoors he could touch the walls and that would allow him to just keep going and get gauge his balance. So yeah, the other day he walked for about five hours like whoa, with two other children like with Natty and our neighbours, we went to the Design Museum The V&A all the way round Holland Park.

Lauren Fenton  19:26  

That's incredible.

Miriam Elia  19:28  

It is incredible. I was one thing I've learned from all this is like that these children make a banal things incredible.

Lauren Fenton  19:39  

That's so true. This, this the moments I mean, you know, how much do you want to celebrate this amazing achievement this week? That Sid is going around in big boy pants. Those celebrations and highs and everyday things are huge. Not to go from positive to negative. But has there been times when Sid’s taken a step back. And how has that been? Because I guess on the topic of uncertainty, you know, me being a planner, I'm like thinking, right? Well, you do this and then this happens and then do this. And then something else happens when when something goes in the other direction, or you get a big kind of shock to the system or something you weren't expecting, how has that been with Sid? Or with yours as his parent? 

Miriam Elia  20:26  

Yeah, it's... I spent a long time being scared that he would be ill. 

Lauren Fenton  20:32  

Right? 

Miriam Elia  20:33  

Because I knew what the repercussions were that. But then when I stopped being scared and said, No, this is an inevitable situation, I can't control when he gets ill, he has to get ill. All I can do is, is make him as healthy as possible, happy as possible. So when he does get, we get back to where we are as quickly as possible. 

Lauren Fenton  20:51  

Yeah. 

Miriam Elia  20:51  

Because if I make him scared, and whatever it is, that's, that's just gonna make it worse. And the last time he got ill, was six months ago, and it was a fever. So I was petrified. I wasn't petrified. I was like, no, he's got the fever. It's like, if we go back to the beginning, again, we go back to the beginning again, and he was noticeably wobbly for about two weeks, but then he was fine.

Lauren Fenton  21:18  

He got back there.

Miriam Elia  21:19  

That's very quick two weeks. And the way I don't I mean, it's kind of planning I'd go Alright, well, the next three months, we're gonna have to do all this work, but it turned out to be two weeks. But yeah, the toileting thing is huge. Like, I think as you as a carer, you're, when you're a carer, you're a mum, but you're a carer and you think oh my, in your head as part of your hair going on. I might actually have to do this forever. And then you realise that they can and it's just like, ah,

Lauren Fenton  21:55  

yeah, it's one less thing. There's one one step towards independence and one less thing that you have to do in that carer role. Yeah, yeah. That's amazing. What's your approach to therapy then? So you're you talked about doing physio before you even had a diagnosis for Sid? Do you throw yourself into all the therapies with him? Or are you? Are you employing your own Miriam style?

Miriam Elia  22:23  

Yeah, I'm just doing things myself. I don't want my whole life to be a therapy session. Like, I think the best thing for him is like the best therapy that I could do was take him to the soft play that Natty loves, you know, and Sid tries to get around it too. And it's sometimes he does it more than Natty and he like, I often take a wheelchair, for example, if we're going to like a theme park and it's always Natty that sits in the wheelchair, always. Sid pushes him all the way around, and he won't get out, he'll have a tantrum. Yeah, but Sid's amazing. Like I never thought I'd see him physically did after what happened. And he's very, he's a bit of a mystery, because he kind of is all there. He's kind of following everything I'm saying.

Lauren Fenton  23:10  

That's why he's got a hilarious sense of humour and pushes himself hard.

Rina Teslica  23:16  

Talk to us Miriam about that, like the syndrome because I don't know anything about Leigh Syndrome. What is it? How does it? How are the symptoms?

Miriam Elia  23:23  

So most disabilities are chromosomal, which is when the genetic code has something different, but mitochondrial conditions are. So in everyone's in everyone's body, you have billions of these tiny things called mitochondria, and their little factories, and they process all the energy that you take from your food. And they make something called ATP, which is your energy. And now, most of the ATP in your body is taken by your brain because that requires a lot of energy to work. So these are your like powerhouses. And in each powerhouse, there are lots of different points in it with different factory workers kind of making this product. So my I carry asomething called the 8993T-C mutation, which means that the point 8993T-C in each one of Sid's, mitochondria, there's a worker who's having a fag break and doesn't want to do the work.

Rina Teslica  24:28  

right 

Miriam Elia  24:28  

It's called the respiratory chain. Depending which worker wants to have a fag break and doesn't want to do the work will have the impact on the rest of the body. Sid's one is the mildest so it's actually the last one in the chain. But it's still in it. All of them are important. So they are making energy but they're just not making the right product. It's not quite good enough for the brain to process. So if you so if you inherit 97 % of these defective energy cells from day one, you're not making enough energy to develop properly to grow to do all of those things, you're going to have problems. It will, it will make you disabled. In the case of my, my grandparents and her brothers, they all got maybe 50 or 60% and 50% working, which means again, even with half of your mitochondria working fully and some not quite so good, you can still be okay, but as you get older, your mitochondria like decline in function. So when you get to like 40, or something, the bad say you had 50 that were good and 50 that were bad, and then the good ones start to deteriorate, suddenly, you got more bad ones. So then the symptoms of Leigh Syndrome start to start and Leigh Syndrome is is devastating. So most children that that that get it die very quickly. The life expectancy is about five best, you know, it can turn them blind, deaf, like there's no rhyme or reason to what it's going to do next. Yeah, it's very, very, very serious. It's, it's, it's awful. And that's probably, if you've asked me, What was the worst thing that you can think on? I'm like, that sounds pretty much like the worst thing. But that with Sid's, mutation, it's different to all that. So most mitochondrial diseases are deadly and people die, children die of them very, very quickly. A lot of stillbirths are actually mitochondrial diseases where the child just didn't... died before they could live. I'm not through my travels now in meetings with lay syndrome networks and stuff like that. A lot of women that have lost like all seven children to it, or like some hardcore stuff. But he still, you know, we hope you He will live into adult life and I think he will I think he's very, very strong. And they said, at Great Ormond Street, they said there's a very good chance that he will. So but yeah, you I am dealing with with something quite serious, but I suppose we all are.

Lauren Fenton  27:21  

Yeah, that's a lot to process they to like, I mean, you clearly hang on to that hype, and you live live for the day, your life as full as you can in that moment. But it's I think anybody would be challenged with considering that and considering the you know, the worst thing. 

Miriam Elia  27:40  

Yeah, I'm always you always have to train yourself not like the worst case scenario is your imagination. 

Lauren Fenton  27:48  

Yeah. 

Miriam Elia  27:49  

You know, if you, if you're always thinking of this, we tend to think in like multiple different directions, and then this could happen and then this. And it's my mother is like the worst like that. Like, you put her in any situation, and she'll find 10 things that might kill your child. Like, you know, with that said.

Lauren Fenton  28:11  

I mean, I guess it's it's that certainty. So you know, talking on the subject of certainty Nobody has that. It's bollocks anyway, nobody knows what's going to happen tomorrow.

Miriam Elia  28:21  

No, I genuinely feel like I went through some weird process, like before the lockdown, because of the intensity of what has had happened. And I felt weirdest thing when people were like, Oh, it's terrible. I was like, No, it's fine. It's great. We're off to Lego Land. And the weird thing is like, the more you love your life, the more they do. And then they get better. You know?

Lauren Fenton  28:53  

Yeah, so find fun in the chaos and uncertainty of it all, not even, like, necessarily like meaning or like some big profound thing, but just find the fucking fun and live it.

Miriam Elia  29:04  

Like, I do have faith in God. And that has really helped me. But I think that if there is meaning, then it's to enjoy this amazing life that we're blessed with. And these children are like, fantastic. And I don't think I would have understood that before I had Sid. We live in this very self absorbed culture. Yeah. And we're always told like your career your career and the TV and the radio and it's like, I think I think that those things are like, okay, they're important to people but but sit is more important, like my children are the most important thing and I love them. So you know, but I decided to just not to be scared of what would happen because you know, it's like que sera sera and the less scared you are of things, the less likely they are to happen and those So learn that when really shit things happen you deal with it fine. Like you're fine. If something appalling happens, then you'll be you'll deal with it like. You will.

Lauren Fenton  30:13  

 and you can't control it anyway.

Miriam Elia  30:15  

I remember this point and like no I just decided to go to Legoland was. We had the best day ever said loved it. He was just like, he went on a train and we had to try and get him off the train. But he was on his Lego train about 20 times. Because when you look at when you read about Leigh syndrome, it's just like your jaw drops. It's just evil, you know? So yeah, that's that's kind of what I do.

Lauren Fenton  30:44  

Lego Land is part of your your medicine, I've never been to Legoland confession. And now I really want to go like

Miriam Elia  30:55  

My parents would never have taken me to a theme park like no

Lauren Fenton  30:58  

Mine wouldn't! They were like totally against themeparks.

Miriam Elia  30:58  

Totally. We weren't allowed to watch Disney they were like really, really anti stuff like that. They really like

Lauren Fenton  31:07  

My dad was.

Rina Teslica  31:08  

Girl's, you missed out. I went to Legoland as often as my mom would take me in order to get a Lego Land driving licence.

Miriam Elia  31:19  

I have to say, since I've had Sid like, because we get loads of free tickets to theme parks. I've been doing a lot of things. He loves roller coasters and stuff but I feel like it's the childhood I never had. But I just think it's a bit of fun. You know, it's sort of it's tacky but it's kind of like for Sid, Sid loves stuff like that. So whatever makes him happy. Like you said if you're not thinking too much about the future, then

Lauren Fenton  31:47  

Yeah, living and playing, maximising the fun Yeah, I wish I could think like you more of the time Miriam. I'm gonna take this as I like, right okay. What Miriam do right, we're going to Legoland guys. Do you talk to Sid about? what how do you explain things to him? Do you explain it to him? 

Miriam Elia  32:11  

He's not gonna comprehend what it is and it's his normal and this is all about fucking normal. This is Sid's fucking normal but for Sid this is all he's ever known. That's just how he experienced his life. He's not bothered by it. Yeah, no. laugh about it all. I mean, we laugh. I don't I can't sit there and talk about mitochondria to a five year old. 

Lauren Fenton  32:36  

And how is Natty and his relationship.

Miriam Elia  32:38  

Incredible, incredible. Natty is an amazing kid. He's very, very, very bright and very funny. And he really keeps saying oh Sid's not talking. Sid not talk.  But he loves him, you know, they cuddle up together. They sleep in the same bed. Sometimes he sits on Sid's face and tickles him. They find ways to play together. It's really beautiful. Obviously said can't play. You know, like dress up as a cowboy. You're doing it he can play hide and seek though. He's pretty good at that. But he they nonverbally have an incredibly close connection because they've always been together like we do everything we're like a little team.. me. And I make them laugh. I make them laugh all the time. So they they'll use a lot of comedy a lot of slapstick silly voices. I mimic people that are supposed to be looking after Sid sometimes

And you know, he'll blame Sid for things all the time though, because he knows that they can't defend himself. Like he just threw a flowerpot all over the beds that there was compost all over the bedroom. And I came into the room and it was like compost all over the bedsheets, all over floor. And I said "Who did this?" and he went "Sid" and I was like Sid didn't do it. Or like, scribbles all over the wall and goes Oh, yeah, "Sid did it" I'm like Sid does not have the motor control to do that.

Lauren Fenton  34:16  

Yeah, I guess it's like blaming, blaming a younger sibling or something. Anyway, it's the kind of thing that siblings do anyway.

Miriam Elia  34:23  

Yeah, it's, it's strangely normal. It's just there's no words. 

Lauren Fenton  34:27  

Yeah. 

Miriam Elia  34:27  

But weirdly there's a kid in in that his class at nursery, he's autistic and can't speak. And, and Natty really loves him and wants him to come over and play. And it's like, because he's that's what he's used to is he's developed like a connection without words.

Lauren Fenton  34:45  

That's interesting. Really beautiful. Yeah. And do you do you and your partner kind of have the same your husband have the same approach? Is he out the door to Legoland at every available opportunity too?

Miriam Elia  35:02  

Complete opposite he's like. He loves Sid to bits, like, you know, he's always playing with him and cuddling him in he's very close to him. But no, he's not. He's more into like, safe, keep safety and you know, like, always holds his hand all the time and very concerned that he might fall over, whereas I don't care that he falls over. Because I'm like, well just get back up again.

Lauren Fenton  35:32  

Different approaches… that must be tricky sometimes to manage? 

Miriam Elia  35:35  

It is. We have a unique balance of like, so basically, I take the kids out on these expeditions and do all the Mad stuff, like throw Sid down a waterslide, or I don't know. Like, I took him ice skating. He likes it. I mean, I do it, because I think it's funny, and I don't like Natty gets hurt quite a lot. He's three he falls in there, keep that three year olds always running around and bashing their heads and falling into things. And so I just take it like that, then Russell does them all kind of like playing at home and being at home and cooking and but you can see that he gets anxious about Sid being as free as I let him be. But you know, it's just gonna be part of of life. It's fine. Because in fact that that feeling of control.

Rina Teslica  36:34  

I was quite similar with Lua 

Miriam Elia  36:36  

You know what's hilarious. I've gotta say this, but anytime a child falls over, around, you know, in the playground or whatever, and goes "ahhh" like that, Sid goes "ha ha ha ha ha"

Rina Teslica  36:51  

Oh my god, I get it. Like if you don't make a big deal out of anything. They take it as it's a big deal. You just move on. And

Miriam Elia  37:00  

This year, right, he's had one or two, four, he had one full that was pretty bad. In London Zoo. And his nose got really duffed up and he has Sid's very vain he likes looking in the mirror. 

Lauren Fenton  37:12  

Because he's beautiful. 

Miriam Elia  37:15  

He knows that. So when he saw his nose all duffed up and it was just before our wedding, he was like, I've seen him have equally as bad bruises but not on his face. And he's in wasn't that bothered, but it was his face. He was like, oh my god, like he's like Kate Moss like 'this is insured'. So that I had to do a lot of you know, like cuddling and all that stuff. But but other than that, I thought actually, he's doing pretty well. Like my friend. He's got a "normal kid". But he's like a bit. You know, the one they always they don't sit still there was running around. 

Lauren Fenton  37:50  

ADHD. 

Miriam Elia  37:51  

Yeah, a bit like that, basically. And he's been hospitalised like five times this year, like broken arm broken leg, throwing himself into a paddling pool and drowning. You know? So I thought, well, Sid's okay. He's quite cautious. I think swimming pools used to freak me out because I'll fall in the pool. But he knows his like, limits. You know, he's not. He's pretty good like that. It's just the wobbliness Yeah, I think it's, I'm used to it. But most people around me are like, oh, like, wherever you go with Sid, people like, you know, they all think he's about to fall or something. 

Lauren Fenton  38:32  

And sometimes, like, because bees quite I don't know if she's that wobbly. But she's got balance issues as well. And when she's, if she's tired, she gets really wobbly. But she's much better, like you said about not holding hands. And it's really it's been really hard for me to like, learn to let go. But if you if you hold her hand or hold her, she she leans on you and actually the times when she's had some of the worst falls is when she's leaning on you, but you don't kind of realise how much and you let go or walk away and she's just like, like, you know, yeah, proper comedy slapstick fall

Miriam Elia  39:08  

It doesn't work. Just let let them figure it out. What you just said about slapstick, I mean, he loves watching anything where people fall over and hurt themselves. 

Lauren Fenton  39:19  

I wonder where he got this, like, sense of humour for Miriam. It's a mystery!

Miriam Elia  39:24  

Really love? It was from my grandma. She's the one that had Leigh Syndrome. 

Lauren Fenton  39:28  

Oh, really? Oh wow 

Miriam Elia  39:29  

She was extremely depressive. Never got outta bed like chain smoking 1950s housewife from Wales. She grew up in a thunder valley in Wales. But she was so funny. So all her friends would just come and sit around a bed and she'd tell them all these stories and stuff and they'd all be laughing but she's really she knew how to make people laugh, but she just had no energy. I remember when I first picked up Sid, it's like, I felt her. You know, it's something in his face. Is the mouth I have I don't know, but I just felt her presence very, very strongly when he was born. And I called, I called him Sid, after her brother that died of Leigh Syndrome.

Rina Teslica  40:10  

Wow. Wow, full circle.

Miriam Elia  40:14  

Full circle. And apparently she said to my mum before she died, she died in the 90s. I'm coming back to this life as a as a little blonde Angel. 

Lauren Fenton  40:26  

What? 

Miriam Elia  40:26  

What! So there's a lot of like weird, superstitious. Yeah, she said that. I'm coming back as a blonde cherub or something like that. Yeah.

Lauren Fenton  40:39  

Woah. I don't really know what to say to that.

Miriam Elia  40:42  

One of those weird things, like I said, we must call him Sid oh, I  love Sid. So that's grandma's brother? Oh, you know.

Lauren Fenton  40:48  

There's a lot of meaning in that.

Miriam Elia  40:49  

Did you find that when you were pregnant... like, because I found that I knew a lot about the child before they were here. Like, like, like, you can feel their character.

Lauren Fenton  41:00  

I don't know if I did. Yeah, it's hard to separate kind of what your expectations and like thoughts are, versus whether you genuinely feel it, I don't know. But I think very quickly, even before their character really developed. So like even when they're little baby, I feel like you kind of know, just from the look or they're like or just instinctively, you get a bit of a vibe of what your child is going to be like what you've said about Sid being really like more robust than perhaps other people might give him credit for or that reading his diagnosis on a piece of paper would imply. I definitely got that quite early days with Bea as well, that kind of she's determined. And it sounds like from Sid, it comes from him as well. It's not like you're pushing a kid that's like screaming No, I don't want to mummy like, it sounds like it's it is in him and you're helping him to get up. That's, that's interesting. I feel like that's the case with Bea as well. There's definitely a driver and a determination and similar to Sid.

Miriam Elia  42:04  

That's so inspiring, I think. 

Lauren Fenton  42:06  

Yeah, coming back to trying to control everything and planning and driving forward. It's almost like they can do that in they're trying to achieve something or do something or not fall over or whatever it is. And then you're having to go in the opposite way. So go right, actually stop trying to drive forward and be determined and control everything and get to my next career milestone, and wherever the fuck it is. And actually drop everything have fun and go to Legoland. I keep coming back to Legoland. It's an interesting contrast, isn't it?

Miriam Elia  42:42  

What Leigh syndrome is gonna do next is not in my control. Right?

Lauren Fenton  42:46  

Yeah, I was gonna ask how is your way of dealing with that uncertainty and those unknowns? How does that spill over into the way that you live your life outside of parenting Sid. Has it had an impact in terms of your career, or your relationships, or your life outside of parenting?

Miriam Elia  43:05  

It's brought me much closer to my husband. It's hard to articulate it. But yeah, we both feel the same way about things. I think my my sense of humour is much more on point now than it was. 

Lauren Fenton  43:19  

Yeah. 

Miriam Elia  43:19  

I mean it was, it was on point. But I, I don't know, you get older and wiser and these experiences shape you. I know, it's my wit my normal is like being with this wobbly child. And signing, and all this stuff you know, I can see the funny side of it all. And I think Sid does too. Because you know, you gotta laugh otherwise what right? Yeah. So it hasn't affected my, my work that much. I think just my mindset, like the way I approach things, I think it will like I said at the beginning I think eventually I will make something quite specifically about this. Because it's it's most of my life, you know, is looking after these kids, you know, and then running to the studio and doing like the whole of we do Lock Down that I did. I was like basically looking after the kids putting into bed, going to the studio and painting all night and then coming back in, you know that. That was that was what I was doing. And it does. Yeah, that fearlessness, that choice. It does inform the way you look at things. Because it's a choice. I don't want to get into too much religious stuff, but it is a bit about kind of going I have freewill to make these decisions. But I'm not really ultimately in control. Yeah, you know, and if there is a God, then this soul was given to me to look after and then if if a tragedy happens, a tragedy happens, you know, people say, Oh, having a disabled child must be so difficult. I think most every time they say I say Sid is basically like an angel childlike, you know? And he never answers back. I mean, he has his meltdowns and stuff, but it's like that we all did. I mean, it's just living in the moment, isn't it? My fucking normal is like it's like I'm constantly I'm somewhere between like, what I want to be with just like get up and oh fuck he's gonna fall into the pond! 

Rina Teslica  45:38  

That's your fucking normal

Miriam Elia  45:42  

like, okay yeah I can be like get I have to be get get up no reaction, all that. But at the same time I'm always like Shit!

Lauren Fenton  45:51  

It's treading that balance 

Miriam Elia  45:53  

because he doesn't have he's got shit balance but it's like I'm always like, that's that's normal day I have specific places that I go that I know are like good, but I can relax a little bit. Do you think that these experiences like make make you not being like Oh, I'm such a good person that makes you more humble and more

Lauren Fenton  46:17  

Shit yeah, actually a friend once said to me, a friend said to me, I'm a much nicer person since I've had Bea. And then and it kinda, she was a bit drunk. And I think it came out that she basically didn't like me very much. But she likes me now. In a weird way, I kind of understand it. Like i i feel like i Well, I definitely didn't have as much empathy. Yeah, I was probably in a bit more of a bubble of my own like, without sounding wanky, like my own career success and like life success and

Rina Teslica  46:58  

Yeah, I totally get it. But I think I think this has made me much more like cynical. I think I was a lot more like romantic about life. And now I'm much more like, I can't stand the shit. I think being a parent of a child with a disability your bullshitametre is just like the you just don't have time. I'm much more like snappier and much more like to the point where before it would just be like yeah, like it's great. Oh my god. I don't know. I don't know if it's made me. 

Miriam Elia  47:34  

Made you more grounded? 

Rina Teslica  47:35  

Yeah, yeah, definitely. Plus, I'm a Pisces. So I'm very I was very like, oh, floaty. Yeah, that got cut very quickly.

Miriam Elia  47:43  

I think as an artist, like before I had kids, I was extremely cynical. And almost the opposite to you actually. Like really, like, slightly angry, cynical, very self motivated, acerbic. And this has made me kind of happy. Free, then, like, connected me to something. Yeah, does that sound ridiculously twee.

Lauren Fenton  48:13  

No it's beautiful. And so everyone's experiences will be different. But actually, if it can bring you a freeing it sounds like actually all of us have described something that's freeing

Miriam Elia  48:27  

Free from societal expectations anymore. 

Lauren Fenton  48:31  

Completely completely that. 

Miriam Elia  48:33  

All this garbage that we tell our children I don't even I don't know what's true anymore. Like, you just don't have to think about any of that. Or what colleges do you go to? what university? Ooo. 

Oh fuck that shit. Yeah, that is very freeing not to be Yeah. With my older daughter who's nine now? Yeah, there's like, what senior school is she going to go to? And there's always kind of conversations and I it's just so nice to feel actually I just want her to be happy and wherever she's happy, and wants to go if she can go there. Let's do that.

Life's too short for that shit, man.

Lauren Fenton  49:13  

Thank you so much for like coming on yeah, and giving us the Miriam Elia Guide to Life. Guide to Being a send, SEND mum and having fun.

Miriam Elia  49:27  

It's a blessing. Everything in my life that I thought was bad, or like terrifying. turned out to be a good thing in the end like a really good thing. So 

Rina Teslica  49:39  

That's lovely.

Lauren Fenton  49:41  

We should leave it on that note. Thanks so much. It's been really great to chat to you.

Rina Teslica  49:47  

Thanks. So so good to have you on.

Miriam Elia  49:50  

We should all go for a drink soon or something.

Lauren Fenton  49:52  

Ahh hell yeah!

Thank you so much for listening to the fucking normal podcast. We love making this podcast? Yes, we do. We are part of a much bigger team almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences.

Rina Teslica  50:16  

So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at fucking normal podcast.com That's f k ing normal podcast.com you can join us on Facebook and on Instagram at fucking normal underscore podcast. That's f k ing normal underscore podcast. You can get all the links and more information in the show notes below.

Lauren Fenton  50:40  

So thanks so much for listening all the way to the end. We'll see you next time.

Transcribed by https://otter.ai

Episode 10: Bridging the gap

~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Lauren Fenton  00:16

This is the Fucking Normal podcast- the cheers,chairs, tears and Friday night beers of parenting disabled children. I'm Rina, and I'm Lauren.

Rina Teslica  00:24

And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories, and chat about the things that we've learned and are still learning.

Lauren Fenton  00:40

Prepare to sometimes laugh, sometimes cry but hopefully leave with a shot of optimism in your arm. And don't forget we are talking from a parent's perspective- we would never presume to talk on behalf of a disabled child or adult. So expect bad language, and quite frankly, some brutal honesty.

Rina Teslica  00:59

Because really, what the fuck is normal anyway?  

Hi, and welcome to another episode of the fucking normal podcast. I'm your host Rina. 

Lauren Fenton  01:19

And I'm Lauren.

Rina Teslica  01:22

And today, we have a super interesting conversation with three- Yes, three guests tackling the topic of Bridging the gap- the concept of where we are with neurodiversity, and where we would all like it to be. As most of you listeners know, Lauren and I were catapulted into the neurodiversity universe, when our daughters were born. We both came in with very little understanding, and honestly, very little experience of this world. We both came in with a whole load of neurotypical expectations embedded in our psyche. But throughout the last six or seven years, we've both come a long way in our understanding and deep appreciation of neurodiversity in all of its wonderful richness. But of course, it goes without saying, we are still learning each and every day. Learning how our children see the world, learning how we can best support them in a world that let's be real, isn't really made for them. And of course, learning what we could do to make it more diverse and embracing for everyone. 

Before we get into this riveting conversation, it's worth defining some terms we're going to be using throughout so neurodiversity is a variation in the human experience of the world. People experience and interact with the world around them in many different ways. And there is no wrong or right way of thinking, learning or behaving.  Autism or ASC is a super broad range of conditions characterised by social and communication differences, repetitive behaviours, reliance on rules and routines and increased sensitivity to central sensory stimuli. Obsessive compulsive disorder or OCD is a condition characterised by recurring thoughts or repetitive behaviours that you cannot control.

Lauren Fenton  02:55

As Rina mentioned we have three guests joining us to talk about this topic. Firstly, sisters- Sophie and Emma Jackson. 

Sophie is an actor and writer, whose debut show, Just be Normal, explores the topics of autism and neurodiversity. She stars in the play alongside her sister Emma, and it is inspired by their own lives and personal stories.  Written off as a problem child- the play explores how Emma, the older of the two sisters, seeks to understand her autism better as she comes to terms with the fact that even those closest to her are poorly equipped to help her on her journey. Meanwhile, Sophie secretly struggles with her own unidentified neuro-divergence, which is reflective of Sophie's quite recent real life discovery that she has been living with OCD. 

And we'll also be talking to Creative Director, Connor Pierce. Connor's production company. Akimbo, is behind the play, and- as it's director, he brings his own lived experience with OCD and neurodiversity. He is passionate about making more inclusive and accessible creative spaces; about making inclusion and diversity at the centre of such productions rather than tick box after thought. Welcome to the podcast, Emma, Sophie and Connor. 

It's great to have all three of you here. 

I'd really like to start with Emma and Sophie's personal story and the inspiration for Just be Normal, the play that we'll talk about in a little bit. So can you tell us a bit more about who you both are? Your childhood and your discovery around your own neuro-divergence?

Emma Jackson  04:41

So I'm Emma, I'm the Autistic one. 

Lauren Fenton 04.49

How did you come to realise that you are autistic? 

Emma Jackson 04:57

I was diagnosed when I was almost 18. But I think one of the reasons why the diagnosis was missed was maybe because we were moving around a lot. That's why people assumed, maybe, I was struggling with friends and socially. So, I think that part of our lives almost masked certain aspects of what should have been picked up as me being autistic. Sophie and I have always been really close. We've kind of always been at the same school.

Rina Teslica 05:27

How many years difference are there? 

Emma Jackson 05:29

So I think there's.. is there 20 months between us?

Rina Teslica  05:31

Oh, wow. 

Emma Jackson 05:32

So yeah, so we are really close. So practically two school years but yeah, less than that.   I just crawled through life ,basically, up until I got to secondary school. There was probably quite a few things in primary, like, for example, I wasn't making friends; I was very interested in reading;I was probably quite ahead of the age group when it came to reading and being obsessed with books; I had lots of different obsessions when I was younger, but again- that can be quite a neurotypical or normal thing to have, when you're when you're young, you know, you've got that thing that you fixate on, that's really fun for them, and you get bored, and it's on to the next thing. So I think it's it is difficult to pick up on the things that were going on, especially in women and in girls, because it isn't, it doesn't, portray itself the same way as a man.  

So, when I got to secondary school, I think that's when my problems started to ramp up- I started to find school very difficult. I was very badly bullied. I had, basically, no friends and through that, unfortunately, fell into the company of some quite dangerous people who were living in the area of London I was living in, which resulted in a lot of issues. Even now, I have even now a lot of trauma but I think it's important to mention that, because it's directly related to my autism- I basically fell into a gang. And through that, I got in trouble with the police regularly. My parents were very worried about what my life is going to look like, going forward, and that's how I was then referred to a specialist via the police. So that's how the start of my diagnosis happened. ..but even from that point it took a while to diagnose, from when I was originally referred to specialists at about 14. So from then until 18, that's how long it took to actually just get a diagnosis.

Rina Teslica  07:46

So it was your mental health struggles that initiated a diagnosis for Autism?

Emma Jackson 07:52

I want to be careful about that kind of language because you don't, well, in this country anyway- you don't go to therapy to get a 'Cure' from Autism. Obviously at the time, I didn't know that I had Autism, so when I got referred to this person, because, I was very, very depressed, with very low moods. I struggled badly, and without going into too much detail, people were very concerned about my life. You know, I think I was actually also quite concerned that potentially something would happen or whatever. So yeah, I was referred initially as someone who had quite severe mental health issues, and I was very, very heavily medicated for all of them but I think that actually quite a lot of what initially appeared as a mental health issue wasn't at all and was actually just projections of Autism...

Lauren Fenton  08:54

That really speaks to, I guess, everyone's lack of understanding, about behaviours, or things that you you were perhaps displaying that didn't fit into their neat bracket of what they knew.

Emma Jackson  09:09

Yeah, definitely.

Lauren Fenton  09:10

So when did the actual Autism- through that you got the autism diagnosis? Right. So when that happened, what was your reaction to that? And what did Autism mean to you prior to the diagnosis, and at that point?

Emma Jackson 09:30

It's pretty embarrassing, really, because previously when I thought of Autism meant... There was a boy who is, I think, a similar age to us. Growing up, he was autistic and he went to a specialised school that could help him. He was nonverbal, and I think that is what I assumed Autism looks like. I never bothered to research it because I was never faced with it. I guess when I think when someone mentions Autism as a disability, I kind of thought I'm not disabled- I'm not a disabled person, which just comes from ignorance. I guess if it doesn't bother you, why would I? Why would I research it? Why would I have looked into it? Which is, which is kind of where the issues with all disabilities sort of start... I think the therapist said, I'd like you to be assessed for Autism. So I went home with that, while she did the assessment stuff. So I kind of thought, like, no, surely no, like, whatever... I researched it a bit but I was kind of skimming. I wasn't. I kind of thought,' Oh, God, another thing that they they're going to slap on me, like what medication will they give me this time?' I actually also was in the process of being admitted to a psychiatric unit. And through that, they also wanted me to be assessed for it. And I think that was actually just a tick box, so that they could cover their backs. 

Emma Jackson 11:02

I think if it came out later that I was Autistic, and they had medicated me for all of this stuff, then I could turn around and be like, ‘Well, hold on a minute…’ So that was my assumption. 

I remember sitting in the car with Sophie and my dad. I don't know if you remember this? I remember also discussing with both Sophie and my dad and they said: ‘No, don't worry, it's not something that you'll have. They're just doing it to make sure.' Then of course, I went through the assessment, which is a whole other thing in itself. It's very odd like thing to do but... especially, when you're almost 18, you're technically an adult, but the assessment is for a child, essentially. So it's a bit odd. Yeah, I remember walking away and thinking, I could just tell by the guy who did the assessment that he knew, I was... I was ticking all these boxes. It was like I was there being like, God, okay, fine. And then when when the report came, and I guess I was quite, it was like a slap on the face, a little bit. And it was like, God, initially I went into like a deep (like a true Autistic) deep dive into everything Autism. I looked into savantism, I looked into everything., I think, in a way, I was trying to relate desperately to people. And even then, so I didn't feel so alone, because I did feel really alone and a bit embarrassed. And then I think I just went through a grieving process, actually. And then fast forward, I kind of learned to accept it. And, you know, lots of different things that I felt that were really positive. So it was a process. It took a while, basically. 

Lauren Fenton  12:41

It sounds very similar to, I guess, most parents' processes that they would go through. So, you know, often children are diagnosed very young and it's the parents that then perhaps go through that exploration, that confusion, denial, grief, acceptance kind of cycle. We've had a lot of parents talk about that, so it's kind of interesting, the parallels, but obviously, it was happening, it's you, it's your life, and it's your identity, and it's who you are. But you're really just sort of really discovering a version of yourself at that age, or that there's something specifically neurodivergent in your identity at almost adulthood. Yes, it's really interesting. How was that period for you, Sophie?

SophieJackson  13:32

Um, let me start by saying that me and Emma have always been able, somehow to maintain our relationship. We've been through, like a lot together, and we've gone through our phases of not talking but overall, we've always been like best friends. So luckily, it's not had a detrimental effect on our relationship. 

But it was really really difficult growing up with Emma as a sister because I fell into this place of like, expectation that I was always fine. I was always okay, I would always get on with it. I would always get up and go to school. And then I've always had issues with anxiety, but it's not something that I would really, I don't ever really remember having a conversation with my parents about it being like, 'Oh, I think there's something weird going on with me'-  I think I just wanted to be or I wanted to fall into that expectation of being an easy child. That's quite a normal dynamic. Yeah, so I just got on with it went to school, blah, blah, blah. Until I randomly got an autoimmune disease when I was 16 that I've always had, but that it just like developed when I was 16. So yeah, I got an autoimmune disease. And then that kind of spiralled my OCD, in like a health related OCD way. Because I thought I thought I had AIDS. I know there was no way I had AIDS but I convinced myself that I had AIDS. And it was it was awful and terrible. I felt like such an idiot, because no one, I couldn't tell anyone that, like, I'm convincing myself that I have all this because I was like, people are gonna think I'm just seeking attention, people are gonna think that I'm just doing this and that. And it got to the point where I really couldn't rationalise anything like, at all. And it physically affected me. I got this thing called vaginismus which because I was so scared of getting sexual health related stuff, my vagina closed, and I couldn't get a tampon in, couldn't get anything in and nothing like- it was awful. So it manifested really physically and it's in my body, and then, I got a diagnosis but it was something that I was very, I was really embarrassed and I was really secretive about it. I didn't really- it's something that I've only started talking about in the past three or four years. Now looking back, I sort of finally then went to the GP and my parents said yeah, we should have maybe sort of picked up on some signs from when you were really small. 

Rina Teslica  15:54

So you were doing it purposefully to make yourself be the more normal child? 

Sophie Jackson 16:01

Yeah, I wanted to be normal. I wanted to be the normal one. I really did because I saw the strain that Emma was going through, what it was causing.  Also, to be honest, no one was really looking at what I was doing anyway. They didn't have to worry about me. So I didn't, it wasn't a conversation. There wasn't really ever really a conversation about my mental health until afterwards, which is okay, it's fine. It's not... It's yeah, it was difficult, but it's okay now. 

Rina Teslica 16:28

So did it ease when Emma got her diagnosis? And they were like, right, we know what's happening. How are you? Kind of thing.

Sophie Jackson 16:37

It's so…it's difficult because when Emma was diagnosed, Emma was 18. And I was 16. And Emma had moved out the house. 

Emma Jackson  16:46

I'm sorry, I moved out at 16. 

Sophie Jackson 16:49

Emma moved out of 16. So then, I don't know what happened. I just didn't really speak to my parents about it until I had to, until I was  18 because it only manifested physically when I was about 17/18. And then I started going to the doctors and I then started talking to my dad about it because it wasn't, it became something that I actually couldn't hide because I'd be at my dad's house and I'd be like going into an OCD spiral and people would notice 

Lauren Fenton 17:16

When you say an OCD spiral, can you describe that for us?  

Sophie Jackson 17.23

Yeah, so for me, it's not like, I don't have any compulsion to like, wash my hands or tap things or, or do any, like repetitive patterns like that. For me, it's like, I'll get a thought in my head. And it will be like, so for example, when I got my autoimmune disease, it was like, yeah, you've got AIDS, and a person that doesn't have OCD would be no like- I can rationalise this and the reasons why you don't- bla bla bla bla bla. And although I can hear the rational voice, the irrational thoughts completely take over to the point where there's, there's no right like- I just cannot rationalise anything. Even small things, like I couldn't have baths for a long period of time when I was a kid because I was having intrusive thoughts about a shark coming up the plug hole, but it's more than normal fears. It's the inability to rationalise silly things, basically, everyone gets intrusive thoughts. I think everyone gets thoughts that just come into their head, and they can't get over it. But for me, it's like. I cannot once I get those thoughts. That's it, and it spirals down. And then then more thoughts come in and sort of like that.

Lauren Fenton  18:29

How are things now? I mean, are you getting support with those struggles? And I guess equally? Where are you both now? Because you've described a lot of the challenges growing up not knowing and then post diagnosis. Has life got easier for both of you and how?

Sophie Jackson  18:48

For me, unfortunately, I've not really as an adult received proper help, mostly because there's a three year waiting list for CBT therapy on the NHS. But luckily, just a few weeks ago, my dad managed to put me on his work health care. So I'm finally at the stage where I've got my referral, and I'm going to get the proper help that I've sort of needed since I was a child.

Lauren Fenton  19:12

Thank goodness, gosh. So that's positive. And Emma, where are you at now with your Autistic Self?

Emma Jackson  19:20

Because I'm someone who has sadly got a lot of trauma that happened as a result of just not having a proper diagnosis early enough, I feel anyway, I think that that trauma still very much affects me today. And dealing with that as an autistic person is very, very difficult because, actually quite similarly to what Sophie's just described, it is a spiral of anxiety and thoughts that I can't control but I mean- I don't receive any professional help anymore, mostly because I don't trust any, I really don't trust people to know how to help me. So it would take a lot for me to go and get help for things that I find difficult with my own autism, for example, but, you know, I think I am lucky in the sense that I've got a partner that's really understanding of everything that I go through daily, and I've got a family that, you know, supports me in the best way that they can. So, yeah, I mean, I'd love to be able to be like, Yeah, you know, I have loads of health, and I feel great all the time. But that wouldn't be honest. Like, it's the honest truth is that I struggle every single day with lots of different things. And I, you know, that's just that is just reality for me.

Lauren Fenton  20:48

Are those struggles largely because of lack of understanding?

Emma Jackson  20:53

Yeah, it's kind of like, I hate to bring up but it is like the whole thing where people Oh, well, this country isn't racist at all. It feels like that. People are so quick to be like, Oh, but I'm not judgmental. I'm really understanding like my brother's sister's, boyfriend's partner's cousin has Autism, so I know all about it. And it's like, you could not even begin to imagine the stuff that happens for me, and I wouldn't pretend to understand what goes on for you. And I guess like, my fear is that people think that they do get it and I'll do something that's very typically autistic- And people are like…’urrr’ Do you know what I mean? And they then back off really quickly. So for me, it's like, I'm constantly masking I'm constantly trying to be like, you know, if I'm in a shop, and someone speaks to me. When you have a baby, I'm sure that everyone, well, you guys can relate. People come up to you now. 'Oh, what a gorgeous baby'. And they want to touch the baby. And they want to like, do like crazy mad gestures. And I'm there like, trying to work out what they're doing. Are they talking to me? Like are they talking to the baby, like, Can I hold eye contact with them? Or like, shut it down? It's really hard to explain but that's the kind of thing that I feel makes me really anxious and people just don't understand or don't get because because our society is so ableist. And I think it's interesting that we always assume that everyone, unless it's a physical disability, that you can see, that everyone's normal everyone's neurotypical. 

Lauren Fenton 22.20

It’s the assumptions. 

Emma Jackson 22.22

Yeah. And that's what I think is really quite a damaging thing. So yeah.

Lauren Fenton  22:26

Yeah. And that is the gap basically, isn't it? There's a gap in understanding, empathy, kind of knowing how the world looks from other people's perspectives? I don't know. Did you happen to see the 'Inside our Autistic Minds' programme? It's basically Chris Packham, who is Autistic himself. And I think that was really what was great about it as well was that he was presenting a show not as an outsider, going, let's go and understand that totally different experience to my own, but as somebody who empathised and understood,

Sophie Jackson  23:01

Because it's crazy how easily people will understand if they actually listen and it's explained to them properly. Yeah. 

Lauren Fenton  23:07

Yeah, I think that's it- Bridging the Gap. It's not just about redesigning everything. It's about listening. Like, you can only understand if you listen, and I feel like, yeah, we need to listen to everybody more.

Rina Teslica  23:21

And being exposed to as much diversity as possible. I think it's so easy to talk about it, which we're doing, but to actually see it is so different. And I think we need as much exposure as possible.

Lauren Fenton  23:36

I think it's bad for everybody. Everybody is richer for a more diverse and interesting world. 

What advice would you give to me as a mum who has one daughter who kind of commands a lot of attention because of behaviour, and also because she has lots of medical and speech therapy, physiotherapy type appointments, and then my other daughter who just kind of gets on with it? It's hard sometimes when one child is very...

Emma Jackson  24:08

Oh my gosh, it must be so hard like  I don’t blame my mum and dad at all, like it's not their fault. And also because of my OCD, I was like, purposely not speaking about it, like, because I didn't want them to... I was anxious about what would happen if I did. It was a whole thing. But I think the difference between you guys and where my parents were at when they were dealing with everything, is that they didn't know, like the word 'Neurodiversity'- it wasn't really a word that we, that I knew. I probably only knew that word when I was about 16/17. And I think you just have to like- just making time for everyone and making everyone's experiences valid. And, what everyone's feeling valid and it is really hard growing up with a sibling that, maybe, commands more attention or needs more help or whatever. And it's really difficult, but just because someone needs more help than me, I think it's just the reassurance that they are still a valid human, even if they are not struggling with things.

Lauren Fenton  24:11

Yeah, valuing everybody equally. It's key to all of this, the world needs to do more of that as well.

Connor Pearce  25:35

You have to have confidence in the fact that just by asking questions, like what do I do as a mum who has one child that's like this and one child like that, you're probably already doing so much more than you give yourself credit for and you realise, because it's not,  I don't think it's a natural state, when you've got one child that has very overt needs to consider the, you know, the other child, when you're presented with something that is so obvious. And so taking up space and time, you're, of course going to be like, you know, hyper focus on getting solutions there. But just by having these conversations, and by being in the groups that you guys are in and acknowledging it is like, is huge, just the just the acknowledgement that there could be this dynamic where this other child needs... I think my a lot of my OCD manifested in the exact same way that Sophie's did. And the reason it didn't get diagnosed for so long was in a really similar way. Family dynamics sort of meant that I very easily kept what was going on with me very covert. And what happened with my family, because my parents weren't aware of the potential for me to have any underlying issues either, was that I ended up burdening. Sorry, shouldering a lot of the burden of other things that were going on. I think if I had just one little bit of advice to parents that might be going through something similar, is just trying to identify the difference between the sibling becoming part of the support network, versus becoming like a third parent in the situation. You know, I think that's the big difference.

Lauren Fenton  27:30

That's a really big challenge as well, because I am more like aware of that. But it still happens at times, you know, it's like she does, my oldest daughter, does perform kind of some… Well, Iike a carer role some of the time. And it's hard to draw a line of what an older sister sibling would be asked to do, ordinarily, because older siblings do get asked to tie their younger siblings shoelaces,  or whatever it might be, versus what's kind of out of the ordinary and then becomes like you say, shouldering a kind of burden of- I am responsible for caring for this child and supporting this child with their needs.

Connor Pearce 28:12

It's so challenging because the the sibling that feels that they are responsible, like you said, will just naturally fall into that. So it's like an unlearning thing. It's not like, there's very little things that anyone can do to stop them feeling that way because I think most siblings will naturally feel that way. But then I think it's probably just awareness from the parents to identify when it's happening and try and like, let them know that it's not their responsibility, you know. But yeah, as I said, I think you're probably doing so much more than you even realise. So don't feel too...

Lauren Fenton  28:46

Thank you but I think, you know, it's on everybody to talk about these things with their children, regardless of whether they they have a child that's neurodiverse or not, I think it's on us as parents to teach our children to be understanding and empathetic and when they see difference, not assume it means deficit, but be curious and that's okay. And that's great. So, that leads us nicely into what you guys are doing now, the three of you in putting on this play, ‘Just be Normal’ that you wrote, Sophie and before we talk a little more about that I think we're going to be treated to a little extract, a monologue from from the play- is that right? So okay.

Sophie Jackson  29:38

Autism.

A developmental disorder or variable severity that is characterised by difficulty and social interaction and communication by restrictive or repetitive thoughts and patterns of behaviour. Life categorised into boxes of different levels of misbehaviour.  She felt like a complete failure since the age of 13, since she was barely a teenager when toddler-like tantrums turned to tactless people turning their backs on the talentless teen, instead of treating her kindly, treating her as something to be tolerated. 

Was I different?

No, I was aggravated and so frustrated as I slowly donated my life to a world that rotated around her. I mean for fucksake, she was older than me. Why can't she follow things how they're supposed to be? Go to school, be carefree. I don't know, after maybe get a degree? My parents would agree. And now we all look back and feel, well shit. And guilty. 

She brought her knees up to her chest and couldn't even try and do her best because it was never enough. And she was done. Looking back to around 2001, when her blank canvas wasn't branded by a doctor's diagnosis, because it didn't exist.  Autism in girls didn't exist.  I mean, 2001 we had the technology to have our first iPods, to clone Storm Troopers, no kill brick supercomputers, just a generation of men in white coats deeming girls as difficult. 

Was it a gift that she wasn't restricted to disability? Let's wait and see. 

Relationships wrecked? I'm sorry, rambling rackets of rigmarole but what is the moral of this story? What if you have to be yourself, but you don't know what that is yet? Because the laboratory only just put you in this category. And everything is too loud, too hard, too much, but also mandatory, like school, since age five, some were kind, but most were so fucking blind to the signs that she screamed. Now she's 17. And she's looking back on her life and everyone has just been so mean, to put it simply. 

She self isolates, no chance for a clean slate. And she's stuck. She started to become angry. Like, I'm sorry, What the actual fuck? ‘Sorry, Emma, it's inappropriate for you to speak to teachers like that.’ She doesn't care, 'I think you're a twat'. 'Well as a matter of fact, with a mouth like that, it would be a miracle if you made it further than becoming a teen mother'. After that, she began to stop, not bother, she didn't feel stronger, life began to look longer and longer. The monsters, however, she held did become stronger. And right now she was conquered, by loneliness. Just take a deep breath. 

Today, one in 54 people are autistic and they don't need a cure. But to be honest, they need more so they can live life that's more than just a chore and not be at constant war with their own mind. Around 700,000 people are on the spectrum, but not one case the same. Life without structure or frame. This is something we need to change. So someone like Emma can be on more than just council wage, and exchange her feeling strange and out of place for something better. So she can fight and not be like the others who had to give up and say good night, when all she really needs is for someone to help her. 

To help her feel all right. 

Lauren Fenton  32:50

~clapping~ Wooo- that's great.

Rina Teslica  32:53

Oh my god, I'm so excited to see this play.

Lauren Fenton  32:55

It was really great. Thank you. Tell us why you wrote the play and what you guys are all hoping to achieve by putting this on?

Sophie Jackson  33:04

So we were having conversation over Lockdown. Emma was just telling me all about- we were just going over memories, and recapping what what has been going on. And then I sort of just had like an afterthought of, what, how were you just left to not be in school? There's so many things that have happened, that I don't know how they've happened, but they have and it's too late to change them. But it was kind of like seeking justice. I guess this is why I started writing. And then it- Yeah. And then Connor obviously helped me develop it and it's kind of gone on to this whole thing. Now. So yeah,

Rina Teslica  33:43

Amazing. Amazing.

Lauren Fenton  33:45

Has it been a tonic? almost therapeutic, for you both for you, Sophie to have written it, but also took it on through performing it together?

Sophie Jackson 33:53

I think it has been definitely therapeutic to write it. I think the first time we performed it, we didn't come into any arguments or any issues and it was really nice. There's been sort of more conversation between the three of us and it's been more difficult this time, emotionally, than it was last time, for whatever reason, but it's good because every conversation that we're having is sort of adding more things into the play that needs to be spoken about. And it's the whole idea of- we're all still learning about this, like this is all still really new to all of us even if it's like the lived experience of our lives.

Rina Teslica  34:31

Erm did you learn, Sophie like more about Emma's journey and her experiences while you were writing?

Sophie Jackson  34:40

I don't know why but I don't think it really hit me how bad it was that she was just left to leave school at that age until I was older and I've been through school and I've done my GCSEs and I've done my A levels and I know that Emma sort of left school with not very many GCSE. Yeah, it was shocking. It's awful. It's not on. It's always really bad.

Rina Teslica  35:00

Emma- was it kind of like a therapy session for you? That's how I would imagine it was/..

Emma Jackson  35:06

The Lockdown, I personally loved because it just allowed me to exist in this way that I've always wanted to. And obviously my partner couldn't go into work. That was amazing. And I felt like it really gave Sophie time to write this and we can have proper conversations about stuff that had gone on which like maybe before the Lockdown, like it wasn't even a case of, Oh, Sophie just was busy and didn't ask me or I was busy, and I didn't respond or whatever it was just that there wasn't that time to breathe and really, like, reflect back on all this awful, but also really funny and like hilarious, things that had happened to the both of us growing up, 

…but I think that in itself was a therapy session. I think the first time around, as Sophie said, it was slightly easier, just in the sense that we didn't run into, Oh, hold on a minute, like, actually, I don't like that or whatever. But I think there's been lots of things that I've had to sit back and actually really listen to and go away and reflect on myself and think actually, like, this isn't all about you like, shock horror, like.. She might also be experiencing something, you know, on the same level that has nothing to do with you, and you should go away and actually think about that. And I think Sophie will agree that there's lots more stuff about her own journey with Neurodiversity. And I think that's taken me a while to come to terms with, like I'm sure my diagnosis took her a while to understand properly and I have tried hard now, this time, to, like I say, understand better about lots of different neurodiversities and what that can mean to other people, because as we've all said many times this process should be the beginning of learning about, you know, all sorts of different things that people go through daily. So yeah.

I also think it is difficult, I mean, it's difficult for me to hear Sophie say that monologue, because lots of that is true. And that did happen. And that's quite a heartbreaking thing, now as an adult to look back on, you know, on that. I find that quite difficult to swallow. And obviously, I'm just lucky that Sophie can do it in a way that I'd like my story to be told. So, there's lots of different aspects that come into it.

Lauren Fenton  36:15

And how have friends and family reacted?

Emma Jackson  36:23

There was one friend that both me and Sophie have, and I think he was quite taken aback, but I think what was quite interesting is a lot of my old teachers came. I think they were almost sickly sweet after the fact that they had realised that all this stuff was going on, and maybe, how badly I was treated by teachers. So, for me that felt like Sophie had given me this way to be like, first of all, fuck you. And second of all, you should be here because actually- you are the type of people that we want here, being confronted with your shitty behaviour. And hopefully, you can take you can take something from this. Learn, learn from it, and never make the same mistake that you made with me again, that's how I felt.

Sophie Jackson  38:27

I just loved the fact that it was a play all about Emma, like the sort of shady people that kicked her out of school and whatever. And she came back and did it on that stage, at the school. So I was just like that’s great..

Emma Jackson 38:38

I mean, I have to say just before  I'm horrible about everyone I went to school with that there were teachers that I'll give an honourable mention to, for me who were really really nice to me and did genuinely want me to succeed. So it was nice to have them there because it was like, I kind of got, I finally in all of school, I never I never did well in anything socially, academically, I was never stupid I was never whatever. I just at that moment I just couldn't. I didn't have any extra Emma to give, to anything like hobbies, studying, anything. So it was nice for me to finally turn around to the people who did say, 'Come on if you apply yourself, you could do this this and this', to say well look, with Connor's help with the team. with Akimbo, with Sophie, I have applied myself and here you go like this is- you know, I finally I've done something 

Lauren Fenton 39:33

Sophie, what about family members and your friends? How did they react to the play?

Sophie Jackson 39:40

I was so scared for people to see this, especially because when we first did it identifying as someone with OCD was very, very, very new and very, very raw and I was like oh my god, all of these people who never knew anything about me or what I was going through, are just suddenly going to find out pretty much everything, so I was really really scared. And I think like, the support that both our dad and our mum have given us, because it must be difficult in that you're seeing the play when you see it. But, as a parent, it's got to be difficult to watch your two children doing a play about how they messed up and that they didn't do things in the right way. But I think the response that we've got from them, isn't that like, oh, like, why did you write that? It was it was more like, what can we now do differently? To be better? That's what's really everyone wanted to be better afterwards. So...

Lauren Fenton  40:38

Yeah, that's good because every I mean, every parent fucks up their kids, that's, as the poem goes, but but not every parent has to see it put on on in a play, for them to see exactly how they fucked up their kids. But maybe every parent should. 

Rina Teslica  40:54

I think every parent should.

Lauren Fenton 40:58

There could be a whole industry in this. 

And Connor, what brought you to the play and wanting to get behind this project, and what do you hope it will lead to or achieve?

Connor Pearce  41:08

I think it was just something I could relate to. The sort of growing up with particular family dynamics was this idea that you've got one sibling that needs all the attention very immediately, and another sibling who also needs a lot of attention, but potentially less immediately, and how that then manifests into a very immediate need for attention, later down the line, because there's been like this level of suppression. And just from a sort of theatrical point of view, as a sort of dramatic narrative arc, it just felt like it really made sense and it was perfect, so Soph went away and injected all of her very recent experience as someone who lives with OCD into it. And then when I read that draft, I was like, this has to be put on this. It's fantastic. We have to, we have to go and put this on somewhere. At the same time, I was developing this production company, called Akimbo, and our whole sort of schtick was to see more projects like this out there. As we've  been talking about, to bridge that gap between people wanting to know more, and actually getting access to good representation, but also people just feeling like they're being accurately represented as well. Accurately and positively represented.

Rina Teslica  42:20

That's the most important thing. I think.

Connor Pearce 42:23

If something's had a profound effect on them, the education comes anyway. And can often linger for longer as well, if there's that lasting effect. So it was like, Okay, we know what we need to do. Now we have we've, we've ticked the education box, now we need to really punch the audience in the gut with some more. Yeah, there's a tonne of layers to it.

Lauren Fenton  42:47

Sounds amazing, I'm really looking forward to seeing this.I’ve got big expectations.

Rina Teslica 42:49

Honestly, me too.

Connor Pearce 42:52

No pressure at all.

Lauren Fenton  42:55

I'm sure it's gonna live up to them. 

Connor Peace  42:57

The only way we'd get a realistic representation of what these guys' lived experiences is, is if we have the rough with the smooth and the heavy with the light and the dark with the you know, the comedy. So, you know, they do a great job of, of staging some of the more ridiculous hilarious things they went through as well. And that's brilliant. Hopefully, that sort of contrast is what will have the sort of the impact that we're looking for.

Lauren Fenton  43:25

I'm a big believer in laughing through the grittiest and the darkest moments. 

Sophie Jackson 43:31

So many funny things happen as well. I feel like so much funny stuff happens.

Lauren Fenton  43:37

Obviously, aside from completely changing the world, and the way that the world understands and embraces neurodiversity-  is this  the start of something then, Connor, for Akimbo in terms of, you said, this is kind of exactly what you wanted to take on in terms of a project that was more inclusive and told these kinds of stories? Is the plan to do more of these? 

Connor Pearce  44:02

Yeah, absolutely. We're a really small team and we all have day jobs. So this is kind of like a, I mean, we all come from this industry but as I think we're probably all aware of, sadly, these kinds of projects manifest themselves in sort of commercial environments more as tick box exercises than they do to enact meaningful change. So we're trying to make this this kind of project profitable, so that we can just do this but meanwhile, we're also sort of in and around the full spectrum of the creative industry. But what's been wonderful is that we've had so much more engagement with people far and wide, this second time around, including, you know, you guys, bloggers and influencers and people like that, who share the lived experience sort of wanting to engage with us on it. And I'm just hoping the more that word can be spread, the more chance this project has of having a wider spread impact. 

Lauren Fenton  45:07

One - are your performances going to be a bit more accessible in terms of the environment that they're in? And then also, how do we think or how to you, as someone in the industry, make steps towards a more accessible experience? Yeah, people not just kind of what they're watching but the environment itself?

Connor Pearce 45:27

Yeah,  it's such a huge undertaking to be honest because by its very nature, theatre isn't an accessible art form. For anyone, you know, a lot of old school institutions are incredibly biased to a certain type of people that should be working in them and enjoying those spaces. That includes disabled communities and neurodivergent communities. And the theatres and institutions that seem to have all the resources and money at their disposal, find it hard to make these spaces accessible. So when you ask a little old indie production company, you know how, how best to do it for a Fringe Festival? It's like, well, the answer is nearly impossible. But we are constantly having conversations between us about how we can achieve it on the budget we have, and with the resources and time we have. 

I think it starts with the with the play itself. You know, it's no good speaking a gospel without the people that that actually are affected by it in the room to engage with it and share their experiences as well. It just doesn't work. So the dynamic there is like, how do we show a difficult neuro diverse experience on stage for people who, who wouldn't understand what's that what that's like, because they don't live with it, whilst not making it so much so that it actually becomes uncomfortable for people who do live through it. So we've been, we've been trying to, this isn't something that we've come up with this has happened in really incredible indie production companies way before us, but we're trying to navigate the idea of a relaxed performance. So it just means that you can come and enjoy the show. It's not stuffy, duffy, old school theatre rules where you have to sit still, you can't, you know, you can't move, you can't get up and leave. If things things get overwhelming. Everybody has free reign to come and go as they as they need to in the theatre. It's kind of like a, just be considerate, mantra. It's like if you have to put it in one sentence, it's like, just be considerate. We're trying to caption every performance we have. We're also working towards an audio described performance. So what that means is people can access an audio file on their phone through their headphones if they are visually impaired. So that they get my voice unfortunately, describing the action whilst they're hearing the dialogue. So we're just

Lauren Fenton  48:10

 Sounds great. 

Connor Pearce  48:10

Yeah, we're just trying- we're not going to get it right, ultimately, and we know we're not going to get it completely right. And we just need to at this stage, celebrate the little victories that we can accomplish, that we know that it's, you know, it's not something we're gonna get right overnight.

Lauren Fenton  48:26

And I think that's, that's true in general, right. So I think like in bridging this gap, because that's the term we've used, it's like, actually, one of the ways that we bridge the gap is also don't be afraid to get things wrong, like learn from them. And we I know, we've talked about it before, but sometimes I think these things become so polarising, and people get so angry, and it's okay to get angry, but just make sure we're getting angry at the right people and the right things, not at people who are trying and who are listening and want to learn and do better. Yeah, it's like,, yeah.

Sophie Jackson  48:59

And I think especially now with like, ‘Cancel Culture’, and  everything that's going on with that. It's so dangerous, because it's, there's so many people that will just cancel people for saying something that they don't know, isn't right, or they don't know isn't, although it's annoying that they don't know, because we do know. But it's like if they're then willing to listen and learn and change that, then cancelling them is just cancelling another person who's actually an ally and actually willing to listen and it's yes, yeah,

Rina Teslica  49:30

I think it's quite dangerous. And that the only way that you can learn is by making mistakes, like nobody's perfect.

Connor Pearce  49:37

What's difficult at the minute is like, how do we, because right now a lot of disabled neurodiverse people do not feel safe in theatre spaces for the right you know, for rightly so, because they're not, they're not built for them, like most environments that, you know, typical world and ableist world that we live in, but it's like how do we get the word out that we're doing these types of performances and they're very welcome there? Without as well, you know, kind of using our performances, as using those people as guinea pigs for, you know.. It's very, it's very difficult to navigate because you want to, you want to, you want to make them feel safe and welcome, with the caveat that it's like, it's our first time doing accessible performances, so I'm really sorry if we get it wrong. 

And ultimately, we as small organisations and units should, and it's the same for your you guys with your with your parents help group, you know, we shouldn't be shouldering the burden of trying to fix the world's problems. You know, we like you guys should have direct access to the right specialists and medical care and therapy care to get the solutions you need with your lived experience, trying to put a show together on a shoestring whilst making it accessible to everybody as well, you know, that. 

My point is that the society we have built ourselves, as even whether you're neurotypical or not, does not serve anybody. It doesn't serve anybody. And I don't need to tell you this as four women, you know, because you know, and this is another this is the other thing I have to say is that I come to this conversation with the shitloads of privilege, absolutely truckloads of it, you guys come to the conversation with varying degrees of privilege too. You know, we're all we're for white people, we're five white people, you know, we can't speak on this conversation from a heritage and race perspective. But it all counts- this conversation is, any conversation like this is so intersectional, you know, and the, the oppressive systems that aren't working for us, aren't working for people that don't look like us, too. And it's only by us all coming together and sharing experiences that we can dismantle oppressive systems

Lauren Fenton  52:03

15 to 20% of the world have displayed some neuro divergence. That's more people in the world than have blue eyes, or yeah, red hair, or whatever.

Connor Pearce  52:19

That's what I was gonna say is that, what gripes me is when people who, you know, claim to be completely neurotypical, or completely the other side of whoever the oppressed is, whether they're sort of director oppressors or just sort of part of that system, is they're kind of people who are scared of like, a change in the other direction, like they're gonna lose a part of their identity, or they're going to lose some privilege that they have. And it's like, it's not working for you, either mate. Who are you protecting? What are you trying to uphold here? Because whatthe biggest suicide rates are in white men, you know, so it's what are white blokes doing, upholding a system that's killing them 

Lauren Fenton  53:05

Not working for them. 

Connor Pearce  53:08

It's not working for them either. And that's what. It's down to education. It's going take everybody to change it. 

Lauren Fenton  53:18

Yeah.

Emma Jackson  53:19

So I just wanted to jump in and say quickly as well, I know this is following on from your point or not, but I I do feel too, that there needs to stop being this idea that it's my responsibility or Sophie's responsibility or Connor's responsibility, or both of your responsibilities to educate you about something that you can go away and research yourself. Now I take that there isn't a lot of information about girls with Autism, that's, that's slightly different. But, you know, there's enough out there that you can go and educate yourself, to a degree, I shouldn't have to be standing up and being like, now this is what I'm going through. This, this and this is where you need to be careful of. But no, you need to go and take that responsibility. And learn. 

You know, I'm I am sick of people saying as well but there's not, there isn't enough out there. Because whilst that's true if you look for it, and if you're genuinely  committed to making things better for everyone, not just neurodiverse people, but everyone- you can do that. It's like it does start in school and introducing that more and not being so afraid of the abnormal normal, if that makes sense. Because it comes from people being like if you see someone with a physical disability, for example, people on the Tube, people are automatically like, oh, well, I'll just I'll stay away and I won't look at them and I'll I'll be you know, I'll put my head down. It's like, fucking hell, like get a grip that you know, I mean, like, this is our issue. Why why are we not, you know, doing more ourselves? Why does it take this push ? I know that the answer will be well, that's just the society that we live in. But, so let's all do something about that, then, you know, I feel a lot of pressure that a lot of the time, I'm sure that like my system, Sophie will say and Connor that I'm constantly like, oh God, like I don't want to upset, you know, people in the Autistic community. I don't want to upset people in the Neurotypical community, I'm constantly thinking, but like, it gets to a point where it's just everyone's different and, and like, we all need to just come together and find some common ground that works for everyone. And it just isn't that difficult. That's, that is the point. 

I really hope that in doing this, maybe we can all get better at that. I think it is just tiring. I do just want people to realise that Autism and other Neurodiversities don't have to look how they've previously been presented to look. And yeah, it's not the responsibility of the people that have these adversities or physical disabilities, or what that looks like to you. That's your responsibility.

Lauren Fenton  56:09

Everybody has the responsibility to learn and do better. I think is what you're saying, and, yeah, we'll get there, guys.

Sophie Jackson 56:22

But look at us all now we're all trying to make people learn and we're all learning off each other. And it's so nice to hear like that. For like, my inner child, wherever it is. So nice to hear that there's like all of you guys getting together and wanting to learn, not just trying to get your child to fit into these boxes, but actually like being like, yeah, this is it and this is I just think it's really good.

Lauren Fenton  56:45

Likewise, I

Rina Teslica  56:46

honestly feel

Lauren Fenton  56:47

So delighted that you guys are doing this. I mean, I like God, Sophie, I really want my children to see this.

Rina Teslica  56:52

Exactly.

Connor Pearce 56:54

Yeah, I think it's really important to say as what because a lot of the conversation around well, you know, if we make it a more neurodivergent world, like, you know, aren't we just going to have people that can't really fit into society, you know, how things have to be. And it's like, the reason why it feels very us and them right now is because the world and environment were built for ourselves- unable to unlock the brilliance that comes from people who are disabled and neuro divergent. And that's not me saying like, that there's this there's the whole autistic genius trope, you know, which autistic people don't need to be geniuses to be accepted in society and be given job opportunities and start families at all. But what is true is that often autistic people, neurodivergent people and disabled people who have very different lived experience, than, you know, quote, unquote, able bodied people is that they see the world we live in, in a very, very different way. And that can often be harnessed to make some really powerful and wonderful change. That's what I'd say to anybody that's like, but what does the world look like that can cater for everybody? It's like, well, a lot, a lot, a lot better. And maybe, you know, there's a place in world leadership for people that are neurodivergent and disabled, not maybe I mean, there fucking is.

Lauren Fenton  58:28

The richness of, there's so much value and I see that, like my younger daughter, she you know, she has a different set of skills and things that are wonderful about her that don't neatly fit into the bracket of what society or certainly school expect of an eight year old kid, that she makes me see the world differently, like, things that she notices the way that she behaves, when she hears music that she likes, or, you know, these things that, you know, I don't see a neurotypical- I hate using that term but neurotypical kids-  I think they're beautiful and actually should be valued for just bringing something different to the party.  

Connor Pearce  59:10

Yeah, for sure.  I mean, that that as a baseline is true. And I think that why it's been really important for us to put this play on and and have the conversation we're having in an environment like theatre, is because there's no one way to do theatre. There is a million, there's myriad ways to do theatre to put on, you know, a performing art but strong and impactful theatre in whatever way it manifests, can have a resounding effect on people you know that that's true to for any good theatre. So what irks me is that, that of all environments out there should be an environment where we're welcoming people that don't fit into society's rigid boxes..

Sophie Jackson  59:58

Especially because we use stuff like Atypical, the TV programme. I don't know if people have seen that- and we use people who like for entertainment and don't represent them, right.

Connor Pearce 1:00:10

And so I think bringing those sorts of people with those perspectives and ways of seeing the world into a space where we have the ability in this space to change worldviews, to change perspectives to make people see things differently. It should be the number one go to place for you know, people, neuro divergent and disabled people should see opportunities in those spaces a-plenty. They shouldn't be feeling like they don't belong in them, or they're not welcome to them. So that I think that's my hope with how many other 1000s of children out there that that could unlock.

Sophie Jackson 1:00:45

I think if people are going to take away anything of it, like  we're at the starting point of change. And it's going to take a long time, but we are at least acknowledging it now.

Rina Teslica  1:00:54

That is beautiful, like, a perfect description of what you guys are trying to do. And I applaud you from afar.

Lauren Fenton  1:01:03

Thank you. Thank you so much. Yeah. That's brilliant. And I, you know, can't wait to see the play. I can't wait to see what you guys do next or where this play might end up or go. After this runs. It's really exciting, guys. And I love everything that you're doing.

Rina Teslica  1:01:19

Definitely. Thank you so so so much for your time. It's been wonderful chatting to you.

Lauren Fenton  1:01:24

Before we finish this, do you have a fucking normal that you want to share?

Rina Teslica  1:01:26

Connor?

Connor Pearce 1:01:27

Oh, yeah. So my fucking normal is finally getting to a place where I can laugh at my intrusive thoughts. My fucking normal is I've now got to a place where I can just laugh at that shit because it's ridiculous. And I think a lot of what they teach you in CBT, and sort of coping mechanisms for that type of OCD is just seeing the funny side.

Emma Jackson 1:01:50

So my fucking normal is pretending to be on the phone to someone, so that people do not come up to me or my daughter in public, so I can avoid social interaction at all costs.

Sophie Jackson 1:02:13

My fucking normal is literally damaging my ears because I have to listen to music so loud to stop thoughts sometimes. Yeah.

Rina Teslica  1:02:25

Oh, thank you. Thank you.

Lauren Fenton  1:02:26

We really look forward to seeing the play. And hopefully, you guys, for maybe a drink afterwards. And 

Thank you so much for listening to the Fucking Normal podcast. We love making this podcast. 

Rina Teslica 1:02:42

Yes, we do. 

Lauren Fenton  1:02:43

We are part of a much bigger team, almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences.

Rina Teslica  1:02:57

So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at fucking normal podcast.com That's f k ing normal podcast.com you can join us on Facebook and on Instagram at fucking normal underscore podcast. That's f k ing normal underscore podcast. You can get all the links and more information in the show notes below.

Lauren Fenton  1:03:21

So thanks so much for listening all the way to the end. We'll see you next time.

Transcribed by https://otter.ai

Epiosde 9; undiagnosed, unseen & unheard

~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Lauren Fenton  0:16  

This is the fucking normal podcast, the cheers, tears and Friday night beers of parenting disabled children. I'm Rina, and I'm Lauren. And we're both mothers to daughters with special needs. 

Rina Teslica  0:29  

Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories, and chat about the things that we've learned and are still learning. 

Lauren Fenton  0:40  

Prepare to sometimes laugh, sometimes cry, but hopefully leave with a shot of optimism in your arm. And don't forget we are talking from a parent's perspective, we would never presume to talk on behalf of the disabled child or adult. So expect bad language, and quite frankly, some brutal honesty. Because really, what the fuck is normal anyway?

Rina Teslica  1:14  

Welcome to another episode of the fucking normal podcast. I'm your host, Rina. 

Lauren Fenton  2:24  

And I'm Lauren.

Rina Teslica  1:22  

Most of us have special needs parents have been in rooms speaking to professionals and not had the answers we were hoping for. It's happened countless times we're short. But have you had a discussion where you've been told the concerns you have are the direct result of your actions as a parent? How do you listen to, let alone trust your instincts when everyone around you is telling you it's all in your head? It's incredulous to think but this seems to be particularly prevailing in the early years of a child's life. And most frequently as first time parents where there are no points of reference, and you tend to not have the confidence in what you're doing. Our guest today details her experience as a new mum at 24, who's gut instincts were telling her something wasn't right with her son. Yet those surrounding her weren't accepting of what she was seeing, and that maybe she was to blame for his delays. Our discussion today is all about the most difficult time in our journey as parents when our children are undiagnosed, we're unseen and our concerns are unheard. We also just want to flag that this episode does touch on suicide, which some of you may find triggering. And if that's not something, you're ready to listen to them, please skip this one and listen to one of our other episodes. 

Lauren Fenton  2:26  

Before we begin, I just wanted to acknowledge here that we're all coming to this conversation from a position of relative privilege. There are often factors such as race, ethnicity, disability, gender, etc. That can have an impact on how you are treated by institutions or professionals. We are coming to this discussion with our experience our reference point and fully acknowledge that we don't have some of these factors impacting on how people treat us.

Lauren Fenton  3:12  

And I guest today is Jasmine Manley or Jazz to her friends and now to the fucking normal podcast. Jaz is 28 years old and lives in Cheshire with her partner Ryan and her five year old son Max. Max is suspected to have a rare as yet undiagnosed underlying genetic condition, the symptoms of which include hypermobility, low muscle tone, febrile convulsions, microcephaly, dyspraxia and global development delay. He also has an autism diagnosis. Jazz herself is autistic having been diagnosed at the age of 24, shortly after Max was born. She has her own blog, auttiemum and Max, where she has candidly and beautifully shared her experiences, as a parent of a child who has special needs. It's fair to say it has been a difficult journey. And as Rina has hinted part of this has been about not being believed. And the toll that that took on Jazz's mental health, leading her to a very dark place. We're so unbelievably grateful that jazz has agreed to share her story with the fucking normal listeners. I'm sure that you're all going to absolutely fall in love with her like Rina and I already have. Welcome to the podcast, Jazz. 

Rina Teslica  4:32  

Welcome, welcome, welcome.

Lauren Fenton  4:34  

How are you today? 

Jazz Manley  4:35  

Yeah, good. I'm excited. 

Lauren Fenton  4:37  

Let's start with a bit of background. So tell us a bit about when you had Max and how were those How was the birth of those early days? 

Jazz Manley  4:46  

Okay, well, he wasn't a planned pregnancy. I never wanted kids just because I Oh, I didn't know I was autistic. But I was really anxious, a really anxious person. And children just never seemed to gel in my brain. I was like, Well, I know I'm not good with other humans. So I'm not going to be good with a little human. And so yeah, he was a massive surprise. And I had hyperemesis gravidarum. If that's how you say it when I was pregnant. Yeah. So that is it's like severe morning sickness. But it's the point where, like, I was vomiting over 20 times a day. It was like having a sickness bug, but for the whole pregnancy, so I couldn't keep anything down. I couldn't keep water down. So I was dehydrated. I kept going to hospital, because I didn't have the I couldn't stand up because I was so dehydrated. And they kept saying, try these anti sickness tablets. Try these anti sickness tablets. And it was awful. And I hated being pregnant. I hated every single thing about being pregnant. It was it was absolutely horrible. 

But yeah, there was there wasn't any concerns in the pregnancy at all. They kept measuring the bump, and they said, Oh, it's a bit small. So we'll send you for growth scans. And the due date kept changing based on his size, but it was there was no like concerns or anything really during pregnancy. And I went to full term. And I started, this might be too much information, but I started to like lose fluid. And I thought I was just weeing myself. I didn't think anything of it. I said oh, you know? One of those things! 

Lauren Fenton  6:46  

We've all been there! I mean, some of us more than others. 

Jazz Manley  6:50  

Yeah, trampolines. I'm not allowed on trampolines any more. 

Rina Teslica  6:54  

Running for the bus, it's not happening.

Jazz Manley  6:59  

Yeah, so I thought I'd just leave in fluid. And we went for a scan. Because I was I was only a couple of days overdue, but they were like, let's do a growth scan. And we'll see if he's okay. We didn't know the sex of Max either at the time. And they were like, Oh, he's, he doesn't look like he's got any fluid. And I was like, oh, yeah, well, I thought I'm just weeing myself. And they were like, Oh, see, you've been losing fluid. I was like, yeah. And then they were like, how long have you been losing fluid? As a few days? I didn't think anything of it. So they were like right yeah, we're booking you in tomorrow morning to be induced? Wow.

So that wasn't, that wasn't fun, because I thought, right, I'm gonna have a water birth, I'm gonna have it really relaxing, and I'm gonna have music and mood lighting. And it was a right you hooked up to a drip, we're gonna break your as we're gonna give you an epidural, because his heart rate kept dropping. And it had been a few hours and they said, Oh, you're not progressing at all. We'll break your water. So they broke my waters. 

And the contractions started comeing. But then 12 hours later, the epidural had totally worn off. And he was still like, nowhere to be seen. So I'm panicking because I'm like, This is my first baby, his heart rate keeps dropping, I haven't got a clue what's going on. I was terrified. And the midwives were arguing in the room with me about whether I needed another epidural, or whether it would end up in an emergency section. And I'm just sat there thinking what the fuck is going on? Like, can you just get this thing out of me? Because I'm done. I'm so done. And, yeah, it was really hard. And I cried a lot. And I remember thinking, I can't I can't do this that just cut it out of me because I can't do this anymore. And they didn't. 

And then it wasn't until 24 hours after my water broke and the contractions started. And they said, right, this is now when you need to push and I'm like, I've had contractions for 24 hours. They didn't give me another epidural. But, I couldn't have the gas and air because it made me pass out. So I couldn't have anything. I was in a lot of pain. And I was just really like traumatised and they said right you're gonna have to you're gonna have to push now because he said he's not coping, and I was like he's not coping. What the fuck. I'm not coping! I was really selfish. What do you mean? So yeah, they they sort of scared me into getting my act together and they're like, just get on with it now stop mard-arsing and so I was pushing and they weren't happy with his heart rate. So they said right on the next contraction, we're going to give you an episiotomy. I had no idea what that was. She was like, so on that contraction, you won't feel it. But that's what we're going to do. So you're going to see blood. I was like okay, so the next contraction they did episiotomy. 

Rina Teslica  10:23  

What is an episiotomy? 

Jazz Manley  10:25  

So it's basically where they make a cut. So they're worried that you might tear. 

Rina Teslica  10:30  

Ah, so they pre cut. 

Jazz Manley  10:32  

So they did that, and there was blood. And he still wasn't coming in. So eventually, they were like, Oh, I can see his head. And they couldn't, they couldn't see his head. Ryan told me afterwards, they couldn't see his head. But she was like, you know, I spoke to her afterwards. And she said, if we didn't get him out, his heart was gonna stop and they were panicking. So we had to tell you, we could see his head. So you would push and not give up.

Lauren Fenton  10:57  

Motivate you gosh, 

Jazz Manley  10:58  

yeah, yeah. Which I totally, totally get. And then eventually, they just, I felt would just pulling and they just pulled him out. And he was just blue and like, floppy and not breathing. But at the time, they pulled him out, and I instantly started bleeding, a lot of blood. So I was like, oh, what's going on? I went really dizzy. And I just remember seeing like, a little blue foot. And I was like, I'm sure that's not supposed to be that colour. And he wasn't crying. And I was like, oh, okay, God, I'm, I'm bleeding everywhere. They stab a needle in my leg, and then pull and pull the placenta out. And then when that comes out, blood goes all up the walls and the midwives face, which obviously wasn't good. So I didn't know what was happening, but I was losing a lot of blood. But I didn't know at the same time, they were trying to get max to breathe. So it was quite good thing that I was bleeding because I wasn't paying attention to him. And it wasn't that long. It was literally a few minutes where he wasn't breathing, because eventually they got him breathing and he didn't need any intervention. He just, he just needed to like be rubbed, and sort of shaken a bit. And eventually he did start breathing, and they put him on my chest. And that was it. It all. Like we thought, okay, he's done. Everything's, everything's fine. But it was horrible. 

Lauren Fenton  12:28  

What a traumatic birth. You know, well, maybe we'll come on to it when we talk more about your story. But I'm interested to know as well, what you talked about in terms of the professionals arguing in front of you, and the way that you were misled or misinformed at times. With how that may have led you to feel about the professionals and that trust and belief or that you had in them? I don't know. Do you reflect on that at all, post birth? 

Jazz Manley  12:57  

Yeah, that that had a massive impact on me, I think from the moment that I was pregnant, of course, their priority is mum and baby. So when, obviously, because the labour wasn't how I planned it. So I was already like, you know, knocked off keel. And then when his heart rate was dropping, and it was a doctor, I assume like an obstetrician or something came in and said, We need to put this on his head. And she tried to do it without any pain relief. And I screamed because it was excruciating. And she said, she literally said, how have you got pregnant if you can't deal with that? And I was like, Yeah, honest to God. She just said that. 

And I was like, Oh, my God. So she said to the midwife, get her an epidural. And I'll come back to she left, and I just broke down in tears. And I was like, I can't do this. She's right. She's totally right. If I can't deal with her putting a little monitor on his head, to make sure his heart rate's okay, how the hell am I going to get him out of my body? So, straightaway, before the labour even started, I had that defeatist mentality of, I can't do this. This is another thing that everyone else can do by me. And I cried my eyes out, and the midwife I had was insane. She was so good. And she was like, you can do it, and you've got no choice, because he's coming out of you. So come on, It's okay. She, I remember her like she looked at me as if she wanted to say that doctor's a twat, but she couldn't say that. But she looked at me she was like, I know. I know it. You can do it.

Yeah, but it did from that point on and then she, because it took me so long to give birth. She went home halfway through my labour. And then I had another midwife and that was the one that was arguing with the head midwife. So like that was more professionals that I was like, they didn't really care about me because they're trying to get the baby out. And it was just a totally different bedside manner than what I needed. And Ryan, at one point, offered to give me something to eat. And they were like, no, no, she can't have that. And he was like, Well, why not? She's been in labour for hours. She's exhausted, just let her have a chocolate bar for God's sake. And the midwife was adamant. Like, no. And obviously, she was the one that thought it might end up in a C-section. So I assume that's why she didn't want me to eat anything. But it was just I felt like I was doing something wrong. Like I was at school. And it was a teacher that was like, No, you're not having that. You need to pull yourself together.

So yeah, from that point on, it made me really weary of like medical professionals. 

Lauren Fenton  15:58  

Not surprised. No one was explaining stuff to you. It was just you will do this. You won't do this. How can you do this? Yeah, horrific. I'm so sorry you went through that. But then max, max recovered in terms of his breathing episode. And can you tell us a bit about the early days of Max? 

Jazz Manley  16:18  

So yeah, so he recovered. He was born with white hair. Like, I mean, Gandolf white.

I remember when, when, when he was born, and made stitch me up and everything the midwives just, like just took him and went. I was like, where's my child? Where's he gone? And she came back and went, sorry, I was just showing him off to everyone because he was hair. And I was like, I haven't even seen his hair. Yeah. I was too busy getting stitched up. 

Lauren Fenton  16:50  

That's outragous! 

Jazz Manley  16:51  

Yeah. But people were obsessed with his hair, like, people would stop in the street just to stroke his head. And I'm like, Get off my newborn please you, germ robot. Go away! 

But yeah, he was in. He was a very unhappy baby. And we didn't like know why. So I breastfed for the first six weeks. And I was adamant. Again with it with the labour I was like, my labour didn't go the way I wanted it to go. So if it kills me, I will breastfeed this child, because that is what society says a good mum does. And that's what I want to be so I was like, 

Rina Teslica  17:31  

And you want to control something as well. I had the same thing. So I totally get what you breastfeed. 

Jazz Manley  17:39  

Yeah, honest. And like when it doesn't work out, it's the end of the world. Like, we so he was really unhappy baby. He wasn't. He wasn't putting weight on, but he wasn't losing it. And yeah, he was just really, really unhappy and just screamed all the time. And the health visitor said to me, well, that's probably colic. And I said, Okay, well, how do I fix that? You know, what? And she said, Well, what you need to do is try this thing you can buy from the supermarket some drops and it helps, and I said okay, I'll try that didn't didn't work. And this point, he would scream nonstop for about four hours to the point where he just stopped breathing. And I would have to, like, not shake, shake, but like, just come on, come on. And then he would come back and start breathing. And I was like, something's not right. And the health visitor said "Okay, it's the breastfeeding is not working, it needs to go on comfort formula."

So I was like what, what why? So I then was like, okay, my breastfeeding has caused my baby to be unhappy. So I stopped breastfeeding. And I stopped like, straightaway, cold turkey which is never good. That's how you get like mastitis and everything. So I was in a lot of pain, went out and got this comfort milk. But mentally I was on the floor. I was so like, I already was struggling anyway, the fact that he was an unhappy baby, he didn't sleep. He just didn't do anything apart from cry, which meant I couldn't go I couldn't take him to Tesco to get a roast chicken because he just screamed the place down or his throw up or it stopped breathing. So I had not left the house. And I was like, You can't do anything right. You are a shit mum, you can't like your baby needs special formula, because your body hasn't worked. So that was shit. And it turned out that it wasn't even colic it was reflux.

So he went through a year I think it was about a year maybe just less than a year of. He would stop breathing. And it turned out it was because the milk was coming up and just sitting and blocking his airway. I didn't know that. So we kept going to hospital. He wasn't keeping any seeds down. He was screaming all the time. And I kept getting that "you're just anymore. You're just worrying over nothing. He's fine. He's a baby". You know what I got told - "Babies cry". 

I was like, I know that! Like, I'm not a total idiot. I didn't know that babies cry. But it's not normal for them to cry this lot, and all the time and not breathe and vomit all the time. Like, and yeah. And I even went with my mum at one stage. So I said, Mum, can you come with me? Because he's not well, I know this upsets me. I know if I go. They'll just say, "You're paranoid. You don't know what you're talking about. You're young first time on, take him home." And I was like, I got to the point where I was like, I can't deal with this constant screaming this unhappy baby. Because at that point, I was like, he hates me. He fucking hates me because Ryan was working. Bless him as much as he could just, you know, for the money because I wasn't working. I was on maternity. So it was me it was just me that had to sit and listen to hours and hours of screaming. And your motherly instincts tell you when your child cries, you feed them, you change them, you cuddle them, you do something. And it was getting to the point where I was like, he hates you. It's it's you he doesn't like, because you know, he doesn't do this with anyone else. But that's because no one else was there. So he couldn't. 

So yeah, I asked my mum to come with me. And the doctor spent the entire time talking to my mum and not me. Even though I was the parent, she would look at my mum and she'd go, "Okay, well, it could be a lot of things. But babies do cry, but we'll keep him in and we'll keep an eye on him." And then he had an explosive nappy. And she said, that was it. That's the reason why now you can go home.

And we were back in the hospital not even two hours later, because he'd stopped breathing. But he stopped breathing for long enough that I rang. I didn't ring an ambulance. Because, you know, you know, and you just question yourself and you're like, do I ring an ambulance, or is it all in my head because they keep saying that he's fine. So I rang my sister, and I was like, "He's not breathing. And normally, it lasts two seconds. And then he's breathing again. And he's not breathing now." And she was like, "my partner's coming straight over".

And by the time he'd got to me, Max had vomited, and his airway was clear. But he said, Let's just take him to A&E Anyway, because this isn't normal. And it's not. It's not right. So we went to A&E. And because we'd been in a few hours earlier, they admitted us straight to the ward. And we were seen by a doctor and he just said, "Has anyone ever mentioned reflux?" And I was like, "no, what, what's that?" And he was like, "Well, you know, he can't keep his feeds down. And it's because he's got reflux, like his oesophagus is just too floppy or something." So I don't know. And he said, "he just needs this medication. You need to sit him up after you fed him and stop giving him the colic drops because they make reflux worse."

Lauren Fenton  23:38  

Do you feel like when your mum, maybe not the way you described it, when your mum was there, but then also your? Was it your brother in law? Yeah. Do you feel like you've got a different reaction or that you were seen and heard more than when you had previously been? 

Jazz Manley  23:54  

Yeah, I think because all the other times had been either just me, or me and Ryan, we were both young and we just got fobbed off. Whereas when my mum came, the doctor spent one, she spent a lot more time with us than anyone had ever spent with us in the room. And she thoroughly checked him over and she said, "listen, we'll just keep him in on the ward for a bit and we'll just keep an eye on him." And it wasn't until he had the explosive nappy and then she said to my mum, "Oh, that'll be the reason" why my mum agreed she was like "Oh yeah, I bet it was that" and I was just totally ignored. But that was still I still got treated better than when I didn't have you know, an older person with me even though I mean I personally don't feel like age impacts your ability to parent I think your ability to parent affects your ability to parent and but yeah, and my brother in law was he's three or four years older than me. 

Rina Teslica  24:53  

Does he have children? 

Jazz Manley  24:55  

Yeah, he does now but he didn't at the time, but he was a teacher. And he had like a beard. So he looked like a parent, if you know what I mean? So yeah, and we and he just knows how to speak to people. Whereas I get very flustered and I stutter. And again, they spoke to him, and not me. And yeah, we we did get treated a lot better when we had sort of like other people with us and it wasn't just just me, which, you know, was kind of the story of my life

Lauren Fenton  25:33  

Makes me so angry. 

Rina Teslica  25:35  

I can't even there are no words to describe how annoying this is to hear like, but has that changed how you interact with like, now you've got a lot of experience, especially with Max and his disabilities? Are you able to now communicate better? Are you do professionals treat you differently now to then? 

Jazz Manley  26:01  

erm so annoying no. Like, I still get treated as the over worrying over anxious mother. And I have to take Ryan with me to appointments because he is known as like the sensible one. So if he asks a question, it gets an answer. If I ask a question I get the you're just worrying though, like there's no point in asking these questions. Because you know, what Max is on his own path? And we don't know. So but I'm like, what, that doesn't make me bad for asking the question 

Lauren Fenton  26:37  

It doesn't invalidate the question. 

Jazz Manley  26:39  

No, 

Lauren Fenton  26:39  

What it does is invalidate your feelings or your your concerns, which, which is completely, it's just awful not being heard or engaged with.

Jazz Manley  26:54  

So I have to be a little bit, a bit more, I have to stand my ground a little bit now, especially with doctors, because because Max is complex, he has the same doctors from when he was younger. And so like they they know, me and Ryan. And so like, they they know that I'm anxious, because it's obvious when I'm in an appointment. Or if we're admitted to the ward, I'm the one that stays with him. And I you know, I'm anxious. That's, that's nothing. That's not my fault. And it's nothing that should be held against me. But it does get held against me because the doctor is the one that sees him on the ward. And she's his paediatrician. So she'll come and she'll go, "oh, are you here again?" Now, she'll always say like, "I know, you get anxious. So if you do worry, you can always bring him in." And I'm like, but then I bring him in, he gets admitted to the ward. And then I get to feel like I'm wasting a bet, or I'm wasting someone's time. Whereas Ryan doesn't get he never ever gets those comments ever. And it really pisses me off. And we're the same age, but he looks older than me.

Lauren Fenton  28:07  

I don't want to be the one to say it. But also, gender may be a factor. 

Jazz Manley  28:13  

I agree.

Lauren Fenton  28:15  

Yeah, I mean, I definitely like I am quite a lot older than you. But I look quite young. And I definitely feel like I sometimes get a different reaction to my husband, even like, I wasn't a first time parent would be but I would ask lots of questions and be like, Wow, and almost get them out before somebody interrupted me or changed the subject or told me I had to leave the room because our time was up. Whereas Patrick, my husband, is and was very good at just taking the space and the time to maybe play back what the consultant has said. And then calmly I mean, he has this kind of manner and his approach to most things anyway, but then calmly ask a question, and you could hear a pin drop, because everybody in the room is like focused on him and ready for the question. So I think I haven't had an experience like the one that you described in terms of that level of not being heard. And we'll go on to more of that in a second. But I see examples of it, even now. And certainly when we were looking for answers or in those early days with Bea a difference in response, which is just ridiculous in this day and age that that level of bias should be impacting on how professionals talk to you and deal with you and listen, listen or not listen to you. It's really upsetting. 

Rina Teslica  29:41  

It's crazy because I was I was having this chat with Arbs yesterday, actually. I was 26 when I had lower and I also look super young. So but the thing with us were that we were so unaccepting of the situation so we didn't make a big deal out of anything. We were like, my pregnancy that was red flags like flying all over the shop. And we were like, "nah it's fine. It's okay. It will be fine once she's born." But then because when Lua was born facially she presented as a syndrome something going on. So it was the other way round where doctors would be like, oh, we need to check this. And we need to check this. And they were very much on the ball. Arbs and I were like, "she looks fine. I mean, I don't know what you're talking about." No. So it's very interesting to hear that like the the flip side of it. Where we were so relaxed, and they were so much more on the let's test for this. Let's do this. Check her heart, check her eyes check her ears, check this. Her head. Do an MRI, so much stuff? And we were like, why?We can't see anything. Yeah, we were like, kind of shocked with all the testing, because we just didn't think that there was anything going on. 

Lauren Fenton  30:59  

Do you think that judgement about your age came into the way that they handled that as well Rina like in a kind of flipside to Jazz's story, which is, you know, she's asking the question, then poo pooing and saying nothing's going "oh don't worry your little head about it." But um, was it more like, "Rina, come on. Now there is something you're gonna have to find out." 

Rina Teslica  31:21  

And yeah yeah, I will never forget, there was one point where they were like this one doctor was like, "I think she's going to need a tracheostomy, and ventilation," it's like coming in, I was floored, I was like, what is it that bad like, and I was so upset with him, that I complained to like the department head of the NICU, because it was outside of my remit of what I thought was going on with Lua. And I understood what a tracheostomy meant. And it was something I did not want to happen. So when he kind of took me to the side and was like, "you need to prepare like this is going to happen at some point in the next couple of months." And I was like, "How dare you?" And I kind of had a massive go at him, and then everybody else. So yeah, there were many times where they were like, Guys, guys, your kid is, you know, yeah, not what you think she is. So, yeah, 

Lauren Fenton  32:19  

Jazz,  you described the process of getting clarity around the reflux and some of those early days with the crying How did things progress in terms of your search for it, because you were shouting and not in the arena needing to be like woken up to the fact that something might be going on with you when you are awake to it.

Tell us about your kind of search for a diagnosis. And you know, when did you first feel like there may be some sort of underlying condition for Max?

Jazz Manley  32:50  

The health visitor in the end, she was amazing. But Max was her first additional needs child. And so she didn't know what to do or what to say or how to say things. And so, you know, she'd already said like, oh well he's failed his check. And then we had nursery because Max was still not going into nursery still had put in the floor still in the baby room when he was two and a half. And nursery were saying he's lazy because you spoil him. He's not talking because he knows you will get him whatever, whatever he wants. I mean, honest to god, this is this is like verbatim what she said. And at this point, he was communicating by just taking your hand to what he wanted, because he just couldn't communicate any other way. So if you wanted to go outside, he'd grab his shoes, or we take you to the door. 

Lauren Fenton  33:42  

That's excellent communication.

Jazz Manley  33:43  

But we we didn't know that and like that was never celebrated. It was just, well, he's choosing not to use words. He's choosing not to point, because you spoil him. She said it to me. She said you spoil him and his dad was in the room with me. But she looked at me and said, "You spoil him. That's why he's not talking. He's not eating because you are giving him his favourite foods. What you need to do is stop giving him those foods because no child will starve themselves." Oh, those those were the words right? 

Rina Teslica  34:23  

How did you react? What do you even say? I feel like I would just be dumbstruck. 

Jazz Manley  34:29  

Yeah. Yeah, I was I I was just speechless. I actually my eyes so that were tears because I was like, I'm screwing my child up and I'm not even doing it on purpose. Like, I'm really really trying and I'm just getting it all wrong. And this little human is now being impacted massively. So I I stopped speaking in that appointment in that meeting. I couldn't form any words because my brain was just going into overdrive at how shit of a parent I was and I was much very much a she's a SENCo and she said that a child will never starve themselves. So she's right and I'm wrong. So I need to not give my child his safe foods because he won't starve themselves. He'll eat the pasta that I've made. And he didn't. And he starved for two days, and literally, literally starved for two days. And it was, it was the hardest, he didn't sleep at night because he was starving. And the tea time was the second day, I broke down to Ryan and I was like, "she's wrong, he's starving. And I'm not listening to her anymore." And we went out and we got him a happy meal. And he ate it. And he slept. And I was like, I am never listening to someone else, again, about my child, because I know him. And he's not a spoiled brat. And he's not naughty, He just struggles. But then the mum guilt kicked him that will you let your child starve for two days, because you listened to that woman. So even though I'd managed to not listen to her and feed him, I was then getting pounded with mum-guilt. So my mental state at that point was just through the floor, because we were still waiting for all these appointments to tell us if anything, was the matter, while still getting told from nursery that it was my fault. And then having the mum guilt of trying to do what this person is telling me, but then he's unhappy. And I just can't please everyone. I just I just couldn't do it. And that, at that point was when I had my first mental breakdown.

Rina Teslica  36:43  

I mean, I'm not surprised at you been through the shitter. Basically. Yeah. Oh, my gosh, 

Lauren Fenton  36:52  

Are you comfortable with describing what happened? And what happened next Jazz?

Jazz Manley  36:57  

Yeah, yeah. So we were all waiting for appointments and things. And this was, this was this was even before COVID. So this was before, like, you know, all the appointments got cancelled and everything. This was just on being on waiting lists. And Max was really hard, because he couldn't communicate with me. And he was having meltdowns. I couldn't take him out on my own, because I couldn't keep him safe, Ryan was working. 

And yeah, it got to a point where more and more I was feeling like, he deserves a better mum. The reason why he is delayed is you. I didn't know I was autistic at the time. But my brain was like, if he's autistic, that's your fault, because you made him. So that's another thing that you've done wrong. And, yeah, it my brain, for some reason is my worst enemy. And Ryan worked evenings. So I was spending a lot of time on my own. Max would be in bed, and I was just sat on my own. You know, because I think at the time, I was working in the day, and Ryan was working in the evenings. So we never saw each other. We never slept, we didn't really eat. And, you know, I was would come home from working a full day because I was working full time, and just have this child who's got so many needs, who I thought hated me, you know, I'd have to make him a meal that he wasn't going to eat, he would just throw at me, eventually give him the food that I'm told I'm not supposed to give him then trying to get him to sleep in a car that's too small for him. But he can't have a bed because he just head butt the walls. 

And one night I was just sat on the sofa and my brain was like he he'd be so much better without you. Because Ryan could find another another girlfriend or someone that could be a good mum to max and she will come along and she'll connect with him and she'll parent him and be a good mum. And he'll be fine. And Ryan will be fine. You're the issue like that's what my brain was telling me. It was saying You're the problem and you should just kill yourself and that normally went away but that night it didn't it just I was just sat on the sofa and my brain was going just kill yourself. Just kill yourself. That's that's what you need to do to make Max better to make Ryan's life better. It would make everyone else happy. So I took an overdose of tablets and ended up in hospital which, you know, like wasn't ideal, but what upsets me the most is that I was on my own with Max, he was asleep in bed like he was totally fine. But that led to a social services referral because I was his main carer. And I had selfishly, you know, taken this overdose, and I left him vulnerable. Ryan came home and found me and we all went to hospital and I got discharged very quickly without any sort of mental health treatment or anything. 

Lauren Fenton  40:35  

What? Nothing? 

Jazz Manley  40:37  

No, I had an assessment and they said, "You need to see your GP to go on antidepressants." That's it. So I was like, okay, that's fine.

So that's, that's what I did. But it like it didn't help, because we were still in the same situation. So it was actually Ryan bless him. Bless his heart. That man had to keep me alive for months. I couldn't shower on my own, he wouldn't leave me on my own. If he went to work, we would have someone else come and sit with me just to make sure I was safe. Because that was the only way we could guarantee that it wouldn't happen again. Because sometimes I was fine. But then sometimes when these thoughts would come in, they were so so overwhelming and strong. They were just as strong as that voice that tells you I love my child. Do you know that that feeling? It was just as strong as that? And so when it when it is that strong? You can't reason with it. And that rational part of your brain isn't there. So that is what you believe wholeheartedly. There's there's nothing else there? So yeah, it was, it was really, really shit. 

Rina Teslica  42:00  

Wow, 

Lauren Fenton  42:01  

Jazz, thank you feeling comfortable to do that, and sharing that with us in the audience? 

Rina Teslica  42:07  

What help did you then get to get you to a place where you were in a better place mentally? How did that what were the steps that were taken?

Jazz Manley  42:18  

So I wasn't given any sort of like mental health treatment or support, I had antidepressant tried a few different ones. And they didn't really help. They made me feel like numb, so I couldn't feel happiness. And it got to a Christmas and I was like, it's it's Christmas time. And I love Christmas. And I'm not happy, like I don't care. I don't care that it's Christmas. I don't care if Max likes his presents. And I was like, I don't want to feel like I don't care. Because I didn't feel anything. Like I didn't feel like love for Ryan or love for Max. I didn't feel anything. So I was like, Well, that's a load of bollocks. And in the end, Ryan was like, listen, I think what we need to do is just talk like, we just need to talk to each other. Every day, we will sit down and they will talk and you say you tell me what your brain is telling you. And I've never done that before. Because other people don't want to hear that you want to die. Like it's not, you know, it's not when he a good conversation starter. Especially someone that loves you. Like if Ryan told me that, it would break my heart. I could not cope with that. 

But he was like, listen, I want to know what your brain is telling you every single day. Because then we can talk it through. And we can rationalise. So we did. We did that for months. And at the same time, appointments started trickling through for Max. So, you know, speech and language. He had an appointment with them. And they were amazing. They they listened to me and they said, "We totally agree with you. It's you're doing amazing. You can't do any more than you're already doing." 

Lauren Fenton  44:06  

Wow, that was long overdue. 

Jazz Manley  44:08  

Yeah, that was the first the first appointment where I was like, Oh my gosh, I it's not all in my head. I'm not crazy. I have not screwed my child up. It was amazing. And it's so funny because any other parent go into that appointment, like because she said to me, yeah, "I think he's autistic and he is very delayed and he's not making eye contact. And he's not communicating at all, apart from with objects." You know, other parents might be like, Oh, my God, like, my kid is only communicating with objects. And he's three. He can't talk. He can't do this. And I was like, yes, someone else can see. 

Yeah, I was right. I was thrilled!

Lauren Fenton  44:49  

Validation of everything that you've been saying and feeling and so that it wasn't just in your head and it wasn't and suddenly somebody's actually listening and caring and wanting to support you on a way forward, god.

Rina Teslica  45:02  

Did this all kind of happen at the same sort of time? So it was all like serendipity where you were kind of getting a hold of your mental health, but also you were getting validation from what you had seen for three years, I'm assuming. Yeah, it was all kind of the jigsaw puzzles were all combining to show this picture. So it must have been, like a relief, sort of. 

Jazz Manley  45:27  

Yeah, it was a massive relief. And I mean, Paul Ryan, I never once asked him how he was feeling. For a guy who always thought his child was fine to come with me to these appointments, where he's told his child's not fine. And I was so happy because I was being listened to. And I just like, I always just wonder how he must have felt because he was going through this as well. But no one was really asking him how he felt. Well, I wasn't anyway. Because, yeah, but it all did just start to feel like it was finally coming together. The speech and language report got sent to the nursery. So then they started to believe me that he's not a naughty child. It's not my parenting. And so then I was like, okay, we can we can do this. And then COVID happens.

Rina Teslica  46:19  

Good old COVID 

Jazz Manley  46:20  

Yeah, we we love it? I mean, I can't imagine what it must have been like for a parent of a medically complex child, because at the time, Max was perfectly healthy. We just thought he was autistic. And that was it. So to us, COVID was just like an absolute inconvenience, because I was like, Okay, well, that paediatrics appointment that we've waited a year for it's been cancelled, and the physio has been cancelled. And all of these appointments that were sort of our beacon of hope for finding out what, you know, what was happening, had all been cancelled nursery got closed, we were being told, you can't go out more than once for exercise. And I'm like, but this child, sometimes if he wants to get his shoes, and he wants to take me to the front door, then we're going for a walk or we're going out. I've been told by speech and language, if he communicates a want or a need with you, you must reward that because that's the only way she's going to understand that if I ask, I get. So I was like, how am I going to do that in these in these rules, and like McDonald's closed, and that was his safe his one meal, like an actual meal that he would eat and stuff like it was just awful. It was it was really, really bad.

But I, I struggled, I did struggle mentally. But I didn't get to the lowest point that I'd got to before because we talked every day, Ryan kicked up a little bit of a fuss and rang people because I can't do phone calls. And he was like, This isn't fair, it's not right, that his ehcp application should, you know should be stopped and things and that his appointments should be cancelled. And so we then got loads of phone appointments, which I couldn't do but Ryan did, and it meant that rather than feeling like I normally felt, which was 'This is hopeless. Everything's just gone to shit'. Was it okay, well, we'll just do it differently. It's still going to happen, but in a different way, rather than it's not going to happen at all. So yeah, and the first paediatric appointment was when he was three and a half, I think. I think he was about three and a half. And that was like the best and worst appointment of my entire life

Yeah, like, she was really thorough. And she listened to me and she sat down. And she just let me tell her everything about from when he was born until now, which was amazing. I mean, Max was headbutting the floor at this point, because he wanted to leave. So she said, I can't do a full physical examination, but I can see that his skull is too small. And I was like, "what? what do you mean?" she went his head's smaller than it should be. And so she got down and tried to measure it. And he was headbutting her. And she was like, "I've had to go a little bit bigger than I would like to, you know, because he was thrashing around, but that measurement is still too small, so while refer him for a brain MRI", and I was like, "Excuse me, I thought he was just autistic." I thought she'd go "Oh, yeah, he's autistic. See you later." But she was like, yeah, "and has anyone ever told you that he might have albinism?" and I was like, No,

No she went "because he's very got very, very white hair." And I was like, "Well, yeah, that's just Max, he just has white hair." All of these things, the white hair, and the Global Development delay, I was like, what? What's that? All of these things? I didn't know what they were. And the microcephally, which is this small skull, she was like, Yeah, "they just all like, they just don't don't really add up. I'm not really sure what's caused them. So we'll refer him for the brain MRI, and I'll see if we can get him an autism diagnosis in the meantime." So I was like alright, okay, she said to me, "it's obvious, you just have to take one look at him. And it's obvious. So it's not all in your head." And I was like, "oh, it's like you read my mind." I don't know how. But she just said that she is not all in your head. He's he's definitely autistic. But there are other things. So I'd gone from feeling like, ah yes, amazing. She can see it. He's gonna get his diagnosis, we'll be on our way. And that'll be fine. And then it was very much more why's he got a small skull? Why is he got white hair? She was like, Oh, he's got all the genetic markers. And as Oh, right. Okay. Don't really know what to do. What to do with that. 

Lauren Fenton  51:23  

How did you feel? Did that create a whole other series of doubts and worries and anxieties that led to you into? Not so great plays? Yeah. Or was was it just that? Yeah, you felt vindicated. But you also then had these concerns and all these new things to learn about which would sort of anybody would feel concerned about or anxious? 

Jazz Manley  51:50  

Yeah, I was in, in two places. So I was happy. And I felt listened to. But then, as soon as you said all these other things, my brain goes into over-drive. Like, what's that? I need to Google that? Why is he got that? Is that something that that happened in the womb? Is that your fault, whereas Ryan is like, Oh, microcephaly, right. Okay. That's it. 

Lauren Fenton  52:19  

Accepting, 

Jazz Manley  52:20  

Accepting. Let's move up. It doesn't change Max. Here he is. Whereas my brain was like, Well, what does that mean? What does that mean for the future? Like, I had so many questions. What, like, what causes microcephaly? What, what is the long term prognosis? I didn't even know what it was. And, like, Max didn't look any different to me. I was like, he doesn't look like he's got a small skull. He hasn't got genetic markers. He's fine. He just got a lot of curly white hair. But he like, he's totally fine. So I was like, having a battle internally, between being in denial from what she'd said about the other things, to then being like, well, she must know what she's on about because she's a doctor. And you don't because you're not a doctor. And if he has got all of these other things, then he only came from one place honey and that's you. And he was cooked in your little oven, 

Lauren Fenton  53:17  

You went back to your, your kind of process that spiralled into blame and doubt about yourself

Jazz Manley  53:25  

Yeah, yeah. So it, I do struggle, like mentally with that. And that's something that I struggle with, like, up and down, I still struggle with it now. Especially when it comes to like, if he's got a new condition, a new diagnosis or a new symptom. We, me and Ryan still go around that process of he's the chilled out one and I'm the over worrier and the overthinker. And it does, like cause issues sometimes in our like relationship and things. 

I got diagnosed with autism, not long before Max did. But I didn't see myself in max at all, because we're, we're very different. And so I saw the autism in him. But I didn't see it in me. And so I after I had my mental breakdown. And I was on that slow road to recovery and me and Ryan were I was telling him all the thoughts that were in my head every day. And he said to me, "do you think you're autistic?" And I was like, No, don't be ridiculous. Like, because in my head, I had the stereotypical max. So I was like, "Well, I didn't line things up. And I didn't. I'm not anything like Max. So no." And we were watching. I'm a celebrity and Anne Hegerty was on there. And he said, "everything that you're telling me is in your head is what she has been saying on I'm a celebrity." And I was like "oh right" so he said "Maybe we should just go to the GP and get get your referral and just see." And I was totally like, "Well that's ridiculous. That's, I'm fine. I'm not like Max." And the GP agreed with me, he was like, "You're way too talkative and social to be autistic." And Ryan had whipped out his phone, write, you know, a little list of all the things that make me autistic blessing. He was like, "well, actually, Doctor, this is the stuff she won't tell you. So she went wash dishes because she can't touch the gross stuff. And she's got a really, she's a really fussy eater, because she's really so sensitive to sensory things like taste and smell. And, you know, like, if, if a plan changes, she can't cope with it" and all of these things and I was like, you know, shit, when we're going live in this little dossier on me and bless them, and he had researched it. And he was like an "actually, autism presents differently in girls and women. And these are what she like, has." And the doctor said, "right, fill out this form. And we'll see." So I thought this questionnaire, and I gave it him back. And when "you've scored really highly, so I'm going to have to refer you for an autism assessment." He was really pissed off with himself. 

Okay, and then we went, like three months later, we got the appointment, and we went, and Ryan came with me. Ryan did most of the talking. And he was like, "she she does this, and she does this. And she does this" all things that I like, "Yeah, I do them like privately, I don't do them in public. Like, I want people to know that I do these things or like, can't do these things. Like I struggle with certain things." And the doctor, the autism assessor was super lovely. And he was like, Yeah, you're definitely autistic. And then as soon as I had that diagnosis, I was like, that's how you need to start trusting your brain a bit more, rather than battling with it. Because you you're not weird. You're not crazy. You're you just have a different brain than everyone else. And that's okay. And like, you and Ryan together will make a really good team. So yes, he's relaxed and chilled out, and he doesn't get as outwardly upset as you about things. But you know, if you weren't there, Max would never have been referred in the first place. And the microcephaly, these things wouldn't have been picked up. So actually, together, you're a good team, you need both of if the balance sort of thing. 

So now even though like we struggle with certain things, we balance each other out really, really well. Because I'm weird, and he's not. 

Lauren Fenton  57:51  

You're not weird. You are you, as you say, your brains just how your brain is. And yeah, it's really interesting that having not wanted to go and pursue or even explore the fact that that might be part of your identity, having it confirmed externally has helped you to feel like, okay, I understand my brain more, and I trust my brain more. Yeah, it sounds like it's a kind of natural part of the journey that you're on in terms of your own mental health and well-being, 

Jazz Manley  58:26  

yeah. Yeah, it is good. I feel like sometimes they Max's professionals use that against me as, oh, well, you're autistic. So you're gonna worry about things and you're gonna question things that Ryan won't question 

Lauren Fenton  58:42  

and look where that got you that hasn't helped at all in the past.

Jazz Manley  58:46  

Exactly, exactly. So I have to like, I do have to put my foot down now. Because Because when I go into appointments, I forget I do what you do. So I just get all my questions out, because I don't want to forget them or someone changes the subject, and then we won't get back onto it. So what I do now is I take I write them down, and I take them in, and I force myself to calm down. Right. Okay. I have got some questions that I want to ask. And then I go through and I asked each question, 

Max, started to develop febrile convulsions 

Lauren Fenton  59:19  

Just  for the benefit of our listeners who maybe don't know what febrile convulsions are. So that's a fever induced seizure. Is that right? 

Jazz Manley  59:26  

Yes. Yeah. And we didn't sort of like know what a seizure was. The first time it happened. He was just in my arms and he was shaking. So we went hospital and they said, "It sounds like a febrile convulsion, but it's a one off, it's fine." He didn't have any anything else. But what he did keep having was a recurrent fever. He would get a fever every few weeks. But we didn't really think anything of it because kids get poorly. And so about a year ago, he started he had another febrile convulsion. We took him to hospital. And they were like, Oh, "we're not really sure. Like, why this has happened? Does he zone out?" And I was like, Well, "yeah, he sits and stares out the window all the time. But sometimes that's just Max like we don't." And she said, "Oh, well, it could be absent seizures." And I was like, what, why is this another thing? 

But obviously, with seizures, you don't know if they're seizures unless you have an EEG, and you catch them. So it was very quickly Oh, we'll get him an EEG. And that'll tell us,

Max is autistic. He is not going to cope with people sticking stuff to his head, let me tell you, so that went down like a cup of cold sick. He. They like they referred him to a special Children's Hospital and they said, these guys are amazing that they've never not once got an EEG result from a child. And I was like, Okay, well, they haven't met my child. And we went and after half an hour, Max was like, headbutting, they put him in a chair and like, strapped him in. And he was headbutting the wooden chair. And they said, "we're not doing this. It's not safe." So then, we went back to the paediatrician, and she said, Okay, that's fine. We'll sedate him and do it. Brilliant. Back to the hospital, under sedation. No, as soon as they started touching his hair, because Max is very, very sensitive. I can't wash his hair, cut his hair, touch his hair at all. And he woke up and again, was headbutting the wall and they said, "No, we're not doing it. This is not safe." And so we have to be, oh, well, we don't know that. And because we can't do the EEG. We don't know if they're seizures. So they said, Keep a diary. So I kept a diary of every time Max just looked off into the distance, I couldn't get his attention, which was a lot, because doesn't live in like people or, you know, the outside world. And so we went back for another appointment. And I said, right, I've got all these videos, and I've got all of this. I've got this diary. And she said, "Oh, you are over worrying about this, aren't you?"

Lauren Fenton  1:02:20  

Oh god! Back there again,

Jazz Manley  1:02:24  

you asked me to, I thought I was doing a good job. And she was like, "absent seizures don't harm them anyway, they're fine. And you know, he only has febrile convulsions, he doesn't have full tonic clonic seizures. So he's fine. You need to stop worring." 

Oh, and at that point, I was like, Oh, my God, this is this is gonna keep happening whenever he has a new symptom, or something that I'm not sure of, I can't ask for help, because they just think I'm an idiot. And it was, it was really, really and it's still, like, traumatic for me now. Like, I don't tell people like that Max may or may not have seizures because I don't know if they're seizures or not.  And I don't feel like I can trust my gut with whether they are I will not because I'm not a doctor. And 

Lauren Fenton  1:03:21  

please trust your instincts. 

Rina Teslica  1:03:24  

Honestly, because you are incredible. 

Lauren Fenton  1:03:26  

That's awful. But there’s that very accurate phrase of ‘mother knows bes’t. You know, we all have those gut instincts. And actually do you know what? If they're not right? Nothing ventured nothing gained, it doesn't matter. Yeah. Do you trust your gut sometimes and push and continue to ask the questions because that's the most important thing that you can do to help get answers from Max. And everything you've described in everything you've done just speaks to what a wonderful mum you are, you know that you're a good mum now, right? 

You must know you are, because you are and everything you've done is about getting answers and getting the support, you know, not being listened to all those times. It's no wonder that you feel the way that you do and it has you know that gaslighting effect of beginning to doubt doubt yourself, but hear from us and from our perspective as fellow Special Needs parents that you're doing a wonderful job and that everything you're doing is fantastic. I really hope that you are listened to going forward and that you do get more support and answers. Just wanted to step in and say that.

Rina Teslica  1:04:44  

Amen I'm so glad you did. Because I feel exactly the same.

Lauren Fenton  1:04:47  

so where are you on the you're doing the genome sequencing to the max to see what might be an underlying condition. Is that where we are today?

Jazz Manley  1:04:57  

Yeah, so the geneticist was amazing. And she listened to us. And she said, it doesn't matter what anyone else thinks. But it sounds to me like what he has are some sort of seizure. And that added to his learning disabilities and his genetic markers and all of these things. I am 90% sure, that he's got a genetic disease. And, obviously, for us who at the start, we thought he was just autistic, Ryan didn't think there was anything to now being told, actually, he might have a rare disease. And she said disease, which I was like, Oh, "What? What do you mean a disease?" but like syndrome or you know, condition. So that was a bit of a punch in the gut. But at the same time, she was like, Yeah, I see all the things that you see, and I hear what you're saying. And we will, we'll do whole genome sequencing. I don't know what that is, I just know, it's like a genetic series of tests and things. And she said, and we'll just see what comes up. So we are still waiting for those results. And we really, really, really want an answer for

Lauren Fenton  1:06:21  

But you do sound in such a better place?

Jazz Manley  1:06:25  

Yeah, massively, massively like I now, I mean, obviously, as anyone that has mental health conditions will attest to, there are good days and bad days. And I have days where I'm like, oh, you know, like, if Max is having a really bad day, I'm on your shit mum. Or, you know, you can't sometimes if he's having a meltdown, and he is loud, I'm like, You know what, I need to go upstairs and have some quiet for five minutes. And Max doesn't he won't be left on his own one. One, he's not safe to be left on his own. But two he just he has to have an adult with him. He won't cope without one. He loves to have mummy or daddy next to him. So then the mum guilt from that is awful. But then I have to pull myself together and just be like, Do you know what? All parents need five minutes. Yeah. And your child has really hard work. And he's very loud. And even a non autistic parent would really struggle with him because Ryan's not autistic. And Ryan really struggles sometimes. And we don't all have the patience of a saint. I have more of a max than any other human being on this planet. But I don't have a lot of patience. So now I'm getting better at sort of giving myself a talking to and being like that, just ignore your brain because it's stupid. It doesn't. Like it doesn't live in this world that you live in. It lives in your brain. And I just give myself little pep talks, like just have five minutes, go downstairs and give him a cuddle because at that point, he would have calmed down, because you're not there winding him up by breathing? And, you know, honestly, so. So I do that now. So and I know I'm a good mum, because 

Lauren Fenton  1:08:12  

Amen! 

Jazz Manley  1:08:15  

sometimes, most of the time. 

Lauren Fenton  1:08:16  

Yes, no, don't qualify it. Don't quality it. I know I'm a good mum. Full stop.

Rina Teslica  1:08:21  

Exactly. To kind of wrap up, what advice have you got for other parents who might be in a similar situation to you? 

Jazz Manley  1:08:30  

Erm, so I'm quite fortunate enough to have a friend who's going through the same journey, similar journey that we went through and she's at the start in the early years, and she's really, really struggling and what I always tell her, I tell her a few things. But I always say it does get easier. You learn coping mechanisms, your child will learn communication strategies, like it might not be speech, it might be Makaton like Max learn, I taught Max Makaton when he couldn't talk as like you will adapt and yes, it shit like don't be afraid to say this is really shit. This is not what I signed up for when I got pregnant. But it does get easier. And I tell her cuz she she says that she's a bad mum when he's really struggling. And I'm like, this is anyone would struggle with this. It doesn't make you a bad mum. But you just need to trust yourself and you know your child because they are half you and they were inside you like you made them and so no one on this planet. Obviously the dad is going to understand that child like you will and you are they're human. So you know as much as it is really hard and your brain will tell you things, that little human thinks you're their world. So you can think you're down here and you're a piece of shit on the floor, but they, they idolise you. And so you need to idolise yourself and see yourself how they see you. Because then that's, you know, that's how you can go through it. Because there's no other way of getting around. 

Rina Teslica  1:10:18  

That is beautifully said. Beautiful.

Lauren Fenton  1:10:21  

I hope you hear yourself saying these things.

Rina Teslica  1:10:24  

Yeah. 

Jazz Manley  1:10:26  

Cringe. 

Rina Teslica  1:10:28  

No. Not at all.

Lauren Fenton  1:10:30  

Thank you so much, Jazz. It's been

Rina Teslica  1:10:34  

fascinating and enlightening and beautiful listening to you.

Jazz Manley  1:10:39  

Oh, thank you. I can't believe you've actually asked me on and let me just ramble to you guys 

Lauren Fenton  1:10:45  

We loved your ramble.We love to ramble! Obviously, as well, it's important that we say thank you for sharing, very honestly and openly one of the hardest parts of your life and your story. And thank you for feeling comfortable to do that, and sharing that with us and the audience. It's, it's important. 

Jazz Manley  1:11:08  

Yeah, it's really important because people, when you're like, in, when you're in that people can say to you, "It gets better. This won't last forever. This is temporary." But they're just words, and they don't resonate in your brain. So it's so so hard. And I wish I had someone that was further down the line on a podcast that I could have listened to who could have said, like, "Listen, I've been there. It's really, really shit, but it gets easier. My child went through that, and he's now really happy. And he's in a special school that I got him into. And I've made all these decisions. And he's flourishing because of, you know, because of my parenting. " And so like, if I can just make one other person who sat at home crying their eyes out, feeling really lonely. If I can just make them feel a bit less lonely, then then I'm happy.

Lauren Fenton  1:12:07  

Can we end by asking you for what is your fucking normal?

Jazz Manley  1:12:13  

Yeah, so I've got a few but the one I'm gonna choose is my fucking normal is when my child sits on the sofa and randomly comes out with Oh for Fucksake!. And I'm really happy that he's learned a new phrase

Rina Teslica  1:12:33  

is the best fucking normal. Oh, yes.

Jazz Manley  1:12:35  

He says it all the time now.

Rina Teslica  1:12:42  

Love it. Love it. Oh, Jazz. Thank you so so much for being on the podcast once again. 

Jazz Manley  1:12:47  

Thank you for having me. 

Rina Teslica  1:12:48  

Really appreciate it. And you've been fabulous.

Lauren Fenton  1:12:51  

Yeah, if I'm ever up in Cheshire, watch out. We're gonna come.

Jazz Manley  1:12:57  

I mean, London scares me. But you know if I'm ever

Lauren Fenton  1:13:01  

Yeah. yeah definitely!

Thank you so much for listening to the fucking normal podcast. We love making this podcast. Yes, we do. We are part of a much bigger team, almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences.

Rina Teslica  1:13:28  

So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at fucking normal podcast.com That's f k ing normal podcast.com you can join us on Facebook and on Instagram at fucking normal underscore podcast. That's f k ing normal underscore podcast. You can get all the links and more information in the show notes below.

Lauren Fenton  1:13:52  

So thanks you so much for listening all the way to the end. We'll see you next time.

Rina Teslica  1:14:01  

Byeee (kissing sound).

Transcribed by https://otter.ai

EPISODE 8: DUALLING NEURODIVERSITY

~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Lauren Fenton  0:16  

This is the f**king normal podcast, the cheers, tears and Friday night beers of parenting disabled children. I'm Rina. And I'm Lauren.

Rina Teslica  0:26  

And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories, and chat about the things that we've learned and are still learning. 

Lauren Fenton  0:41  

Prepare to sometimes laugh, sometimes cry, but hopefully leave with a shot of optimism in your arm. And don't forget we are talking from a parent's perspective. We would never presume to talk on behalf of the disabled child or adult. So expect bad language and quite frankly, some brutal honesty.

Rina Teslica  1:00  

Because really what the f**k is normal anyway? 

~music~

Wake me up loud as clouds, all my love for you.

Lauren Fenton  1:15  

Hello, and welcome back to another episode of the f**king normal, where today our topic is dualling neurodiversity. And we will talk about the parenting experience when both child and parent are neurodivergent. So neurodiversity describes the variation in the human experience of the world. The idea that people experience and interact with the world around them in many different ways. There's no one right way of thinking, learning or behaving, and differences should not be viewed as deficits. As parents to neuro diverse children, we all see firsthand how often neuro variance can butt up against an ableist world full of social expectations and neurotypical norms, but with reportedly 15-20% of the world's population, exhibiting some form of neuro divergence. Isn't this just f**king life in all its richness? Is it and isn't the world all the better for all this diversity?

Rina Teslica  2:12  

So our guest today is Bryony Kimmings,  famous for her brutally honest autobiographical shows. Most recently she created I'm a Phoenix bitch, which touches on motherhood and mental health. So Bryony was diagnosed as having ADHD at the age of 40. Her son Frank is seven and is autistic. Bryony was diagnosed the same year that Frank got his autism diagnosis. And it's fair to say that they're doing neurodiversity in their own way. 

But before we chat to Bryony, I want to provide some clear context for people who don't know, ADHD in medical terms is attention deficit hyperactivity disorder is a condition which is characterised by inattentiveness, hyperactivity, and impulsivity, plus, it includes positive traits like hyper focus, creativity, spontaneity and resilience. Autism or ASD. Autism Spectrum Condition refers to the broad range of conditions characterised by social and communication differences, repetitive behaviours, reliance on rules and boundaries and routines, and an increased sensitivity to different stimulus such as sounds, taste and touch. Welcome Bryony

Lauren Fenton  3:24  

Welcome. thank you so much  for coming on the f**king normal. How are you today?

Bryony Kimmings  3:33  

I'm good. I'm really cold in my house and heatings off. And I'm like, excited but also in a little ball

Lauren Fenton  3:43  

the way to be.

Rina Teslica  3:45  

As am I. Plus, I've got a hot tea so I can like warm my hands constantly.

Lauren Fenton  3:50  

Sorry

Bryony Kimmings 3.51

Good idea.

Lauren Fenton  3:53  

So I guess we'd like to start with talking about not the very beginning. But about  you and Frank and your diagnosis given that's what the topic is. It's about neurodiversity and the fact that you both share that kind of neuro diverse label. I mean, maybe it would be helpful to first introduce yourself and Frank and tell us a bit more about Frank and what he's like, before we get into the diagnosis.

Bryony Kimmings  4:26  

What is Frank, like? He is a little joyful being. He’s very into nature. He's very chatty. He's really emotional and needs quite a lot of emotional reassurance. And he's, he's quite sparkly likes dressing up and putting on shows. Sound like anyone you know?

Rina Teslica  4:55  

Apple tree, Apple Tree,Yeah!

Bryony Kimmings  4:57  

I know. I know. It's really difficult to know whether I've just forced it upon him or if  he is actually naturally a performer. Yeah, he's sensitive, sparkly and sensitive, I'd say.

Lauren Fenton  5:09  

What kind of precipitated the diagnosis process for Frank and I said it was Frank diagnosed as autistic fast. And then yourself what? Tell us about that? Yeah. What happened? Why did you guys seek the diagnoses?

Bryony Kimmings  5:25  

Yeah, interestingly, I mean, you know, we're all friends, we all know one another's children. And I'd been really adamant with Clare, another one of our friends who's done this podcast, like, Frank isn't autistic, like, he just doesn't display those symptoms, like I look at aAda, and he's not her, you know, like.  And  after it all happened, she sort of looked at me and was like, Well, I obviously knew he was, but you can't, you can't say that to somebody else, you have to let them go on their own journey. So I think. for me, it was like really shocking when the neurologist sort of said, I think we're going to test him for autism, because I was just like, I think like, most people, I was like, well, he's not rain, man. He doesn't count cards when I drop them on the floor. He doesn't love maths, you know, so and I think I was looking at it through that sort of, really, I suppose really media kind of concocted version of it. And so I still went into the assessment when he was like five thinking, this kid's not autistic, like, yeah, he's got disabilities, he's got, you know, he's got neurological differences, but he's not autistic. And then we got the diagnosis of atypical, atypical, you know, like, Oh, what's that mean? So that that happens, like, oh, he doesn't, you know, like, it's not presenting, in the sort of maybe the dominant version of that, of what that looks like, what the spectrum looks like, but he's certainly displaying some of the elements of it. So then, so then it's like, okay, where is he on the spectrum? I can remember saying, that to him, like, “well if this is a line, and this is good, and high functioning, and verbal and intelligent, and will be Bill Gates, or, you know, whoever Steve Jobs, and then on the other end is like, nonverbal. You know, you know, bad, bad, good or bad” you know, and they were like, “Oh, here's a book on autism. And it's not a spectrum, like a line, it's a spectrum like a circle. And if you imagine a colour spectrum, like there's seven or eight different things that can be present in an autistic person, and they'll have different gradients of each of those, and that's why it's called a spectrum, like a colour spectrum.” Okay, you know, so I'm like scrabbling around thinking, he's not autistic, then what even is autism? 

You know, I don't think I've even like thought about it. I had a friend who was when I was growing up in my teenage years who had severely autistic brother, and just, that's just what I think of autism, as you know. So, I was so shocked at him. And so, I think, you know, as with all of these things, grief comes into it, you know, grieving some kind of dream. Even when your child has complex disabilities, like my child, and everything's always changing, everything can slide backwards or stop. You're still, as soon as you get something, aren't you, you're sort of going well, at least I can fixate on that, you know, in the future that and then something will come along and punch that off you and you'll be like, Okay, well, he might not ride a bike, but like, Okay, wellhow about that. Maybe he'll be able to write his name, you know. You're always just scrambling around for the sort of the logical next step or the way in which you can kind of deal with it. 

And I think I spent like three months, just like, What the hell am I going to do? Like, I've got to change everything I've been doing like, I was disciplining him. You know, disciplining an autistic kid for basically being autistic is like, like, I still think about it now and hate myself for it. You have to really work hard not to really go into the Doom about those kinds of things. But yeah, okay, change everything. Everything needs to change. So it's like I did a course. They send you on a course don’t they, they love to send you on a course. Have a couple courses! Read this book! You're like, okay, sure. I haven't got a full time job and I’m not a full time single mum. Don't worry, I'll just absorb all of the stuff. And I revolutionised kind of how everything worked in our house. And of course, when you do that for an autistic person, you're creating an environment that helps them to thrive, right so you're creating the non-medical model of disability, you're creating a social model. What do you need? What do you feel? and trying things for like, a few months, it was like, someone sprinkled magical dust on our house. It was like you know, like, you've got a got a key to the door thing. But because I was because I was doing all that stuff. You know, pecs pointing images to pointing out what do you want this or this? And how do you feel and what do you need? And I started to think, oh my god, like, I need this stuff, right? This stuff's really great. Like, this stuff's amazing. Oh, shit. So, my therapist had said to me a few times, I think you might be ADHD.

Lauren Fenton  10:30  

And did you know what that meant?

Bryony Kimmings  10:33  

And you're like, No, so like, and this is the thing again, like, even though you've got a disabled kid, you're still like, I'm not ADHD. ADHD is little boys who f**king fling themselves out of windows in naughty schools, you know, like, I'm not ADHD like, shut up.

Rina Teslica  10:48  

So it wasn't so like… you'd already heard. Like, it wasn't like the ADHD kind of diagnosis came out of left field, you'd already had somebody talk about it with you,

Bryony Kimmings  10:59  

It was around the same time. And I remember going into my therapy, probably one of the last times I actually saw her in person before the pandemic. And like, you know, another story of like, how I'd overdrank at the weekend, or I'd, or I'd spent money on my credit card I didn't have and like, or like, I just, like, destroyed something just to like, just destroy it, and then stress out about getting it all back together again, you know, like, just this this constant, repetitive destroying destructive behaviour. And, like, you know, when you're in your 30s, maybe your 20s even more so. But like, not when you're in your 40s Like, you're like, I used to, I used to think it was cool, you know, I'm edgy. Like, I just, I just go places then trash ‘um, you know, like, and then it's like, you get to 40, like, what am I doing? Like, I'm a parent, you know, like, You're not a kid. This isn't rock and roll. This is actually real life. And she's sort of just I don't know why she did it this way. But she just sort of went as I was sort of walking out the door, she was like, I think you might be ADHD!

Lauren Fenton  12:06  

Way to deliver it.

Bryony Kimmings  12:09  

Like, I don't know, she, she never really explained why she did it like that. And I don't know whether she just had thought about it. But it was just, I just remember being out in the street all of a sudden being like, nah. 

Rina Teslica  12:25  

Did it make you think? Did you stop and be like, hold on a second maybe?

Bryony Kimmings  12:29  

Well it was, it was in there, you know, like it was in there. So when I was getting Frank's autism stuff, it was in there. And I think Tim and I, that's Frank's dad, I think both of us have always toyed with the idea that maybe both of us in neuro-diverse in some way, like I mean, when you have a disabled kid, you know, they're testing you genetically. They're asking you about your own lives and you start to think, Hey, man, maybe this is coming from me. You don't really think about it. Until then do you don't if you don't identify as disabled, if you have a disabled child, suddenly you're like, Okay, what part of that child is me? Yeah. And was it me? Was it me? Was it my genes? Was it my, you know? So I think we had been thinking about it, but yeah know, it was like when I started to do all the pecs stuff and all the kind of like looking at trying to make our house into a neurodiverse kind of wonderland that it was like, oh my god, like, I think she might be right.

Lauren Fenton  13:23  

I was just gonna say did that change how you then viewed your life looking back when you when you started to kind of learn more about ADHD? Did you see yourself very differently in terms of your childhood and, and the 20s and 30s. 

Bryony Kimmings  13:37  

It was like, of course. Oh my God, it was like so first of all, I was like, Okay, this obviously isn't just little boys in the classroom. This is like, I need to really look at it. So I listened to an audio book because hey guys, funnily enough, I've never been able to read a book because I'm ADHD you know, like so I listened to this audiobook Sari Solden. It’s by Sari Solden. It’s something like women who have ADHD, because people had started to get diagnosed a bit more. Friends of mine were talking about it was starting to be a thing. And it's a real thing now. And so I listened to it and, and everything, you know, everything she said was like, Oh my God, it was like ticking off a list. And that for me is a really was a really difficult thing. Because I think I thought I knew myself, you know, like, I thought I knew. I thought I knew everything. I mean, I always say this in every stage of my life. I know everything now. You don't. Maybe I should just stop thinking I know everything. But um, I it was like, Oh, my Goodness me. Okay, so it opened this like, wound, I'd say, an old wound that perhaps I'd always had, but hadn't it always been. It's, oh, don't touch that wound. Like don't touch that. Like, you know, it was like don't touch that. And then it was like, Okay, I'm gonna have to touch that now. 

To get assessed, you have to, a bit like Frank really, you have to speak to your mum, right? You have to your mum has to Yeah, like, which is really hard, right? Even if you have a good relationship with your mum it’s critical, isn't it? In a way, it's like, okay, you get a form and it's like, right. So, for example, do you do Stim? Like do you flap your hands or jump up and down when you feel happy or anxious? No, I don't, in adulthood, but I feel like I want to a lot. But I don't right and then I'm sitting with my mum. Like, did I? presumably I didn't do that? as Oh, do that as a kid like, oh, no, no, no. Yeah, I used to like trot on the ground like a horsey. And we used to say, Oh, stop being a horsey, you know? So it's like, cool. Like, you know, try not to try not to react because that's your mum, you don't want to be like, errr didn't you think that that was strange, but also it was early 80s. And no one knew about this stuff. So I was trying not to be critical. But you know, thinking to myself, if I like thinking about that moment, when I thought, oh my god, I disciplined Frank for having a meltdown. It wasn't a tantrum, it was a meltdown. And then thinking that's happened to me, that happened to me ‘stop trotting’, ‘stop pretending to be a horse’, ‘Keep still’, you know, so I was, I suppose, grieving myself, while simultaneously also trying to ensure that he didn't have the same experience. So I guess in some ways, it was really positive, because it was like, I know this. But in other ways, it was really negative and sad, because it was like, I had to unpick everything. It's like putting a whole new lense on everything and looking through it and, and saying, oh, that's why I never had good relationships. Oh, that's why I've never been good with money. Oh, that's why I'm hypersensitive to emotions. And people have always said, I'm dramatic. No, that's why I have a job as a performance artist where people clap me every day, because it's dopamine I'm looking for, like, that's why I drink so much. That's why I've had sex addiction. Like it's like everything.

Rina Teslica  17:22  

Did you feel seen because it must have felt like, oh, wow, like your you got a mirror that's like held up to you. And you finally can understand yourself a little bit more. I can imagine it feeling quite liberating, in a way.

Bryony Kimmings  17:38  

It was after a while, first of all, it was devastating. And then it was now I think of it as a gift. You know, it's unlocked many things, one of which is self care, and knowledge of oneself enough to change the patterns or to live more as myself. But yeah, I think once I was medicated, and once I realised that first, you know, this is me again, like, I'm, he's got that wrong. He scored up the form in front of me and said, Oh, yeah, you're definitely ADHD. And I was like, Yeah, you don't know anything, you know. And he was like, Well, the best way to know and the way in which we can definitely confirm it is if you respond to medication, I'm gonna give you some seriously strong speed. And if you feel speedy, and you feel like your jaw’s going and your heart rates up and you're, you know, you feel really speedy, then you're not ADHD, we've got this wrong, something else. It might be like a borderline personality disorder. It could be autism. You know, there's something going on here though. And I was thinking to myself oh no, I know what this is gonna do, because I've, all of my friends, all of my life has been like, How come you never get fun? Everyone is super high. And I'm just sitting in the corner being like, I'm just gonna write a shopping list. You know, like, I'm gonna read this book. And I was like, I knew as soon as he said it, I was like, okay,

Lauren Fenton  19:02  

so it rebalanced you almost as opposed to made you speedy.

Bryony Kimmings  19:07  

Yeah. Like, yeah, absolutely. Everyone's always commented on it. Like, it's amazing how many drugs you can put into your body and never

Lauren Fenton  19:15  

like a superpower.

Bryony Kimmings  19:16  

So I took it, and I couldn't, because I wasn't drunk or because we went on a night out and it was controlled, and it was a small dose and I forget, for the first time ever, I guess, must have had the clarity that non neurodivergent people feel on a normal day, right? And I was just like, I was like, Oh, my Goodness me. Like I was like, hang on a minute. If this had been how quiet, how focused, how non scattergun, non anxious, non ruminating, non extreme emotions like non flicking thoughts from thing to think how none of that was there, I would run the world. If I was not neurodivergent I would be president of the World by now, you know, like, because it was like, oh my god, it's like the noise just stopped like that. Not everybody responds like that. Like, I've got a lot of ADHD friends who struggled to find the right medication. But for me, it was like, the drugs were just like, Okay, this is what it feels like to be normal. I was like, Oh, my goodness me. Oh, yeah I am ADHD.,

Lauren Fenton  20:30  

And you started that, I guess, acceptance that you talked about? 

Bryony Kimmings  20:39  

Yeah, then it's possible to kind of, then it's possible to kind of start looking at it. So really, in a really less grief stricken way, because it felt like I was getting somewhere in it. Like, it felt like all those things that always felt like a burden, returned down a little bit, so I could get somewhere so I can be like, Okay, that's what that is the reason why I haven't ever really quite been able to grasp my finances or really ever been able to, you know, just have one drink like, or not stop showing off on stage and be called back all the time to that kind of dopamine hit is because that's what my brain is needed all this time, a deficit of dopamine has been present. And now I've got that dopamine, I can start to think about how I can change, change my existence through talking therapy through different types of dopamine and start to think about, it was forgiving, it was like it's not your fault. And I think a lot of people with ADHD and autism have been led to believe that they're difficult, or they're led to believe that this, you know, this is your fault. You're just defective in some way. You're just kind of, there's something wrong with you.

Lauren Fenton  21:49  

Do you think that was helped by Frank and going through the autism diagnosis? Would it have been a different process if it hadn't been precipitated by that journey, for Frank's diagnosis?

Bryony Kimmings  22:03  

Everything would be different if, if I didn't have Frank, you know, it's like, in a way, in a way, when you have a kid you, you care about them, way more than you care about yourself. Like, sadly, you know, now I'm learning through therapy that, to love yourself is like, 101, you know, like to really care about yourself and to come back to yourself. But yeah, like, it was, weirdly more important for me to get my shit together to parent rather than to get my shit together for myself. You know, it's like, anything I can do. It's always been that anything I can do to help him. And in some ways, it's quite nice, because you can be like, Okay, I'm going to try and fix myself because I've got something other than me. to do. You know. So yeah, it would definitely, I don't think it would have happened. If I hadn't had frank, I don't I think I would have spent the rest of my life just being like, oh, yeah, maybe I'm a bit annoying and a bit weird and a bit over dramatic. And, and you know, that had caused such great anxiety and depression in my life, because that's what that does, if you don't diagnose neurodiversity, or you don't create an environment where it's okay to be neurodivergent you comorbidly develop extreme mental illness or mental health problems. So,

Rina Teslica  23:22  

You talked about that when you did that. I'm a Phoenix bitch and your struggles with postnatal depression. Do you think that was made worse because you had the ADHD that you didn’t know?

Bryony Kimmings  23:34  

Yeah, I think it was overwhelm. And yeah, it triggered a sort of psychosis in that way. But I think now I look back over my life. I can see periods where I've been extremely depressed, and just denied it or, or just medicated it with drink or drugs or perhaps with, you know, actually, no, not with normal medication. It's always been like, yeah, it's always been present, but I've never been even thought about the fact that it's like solvable. You know, that actually, you don't have anxiety or depression, you have ADHD. And because it was undiagnosed for a really long time, you've developed anxiety and depression. And I think it was really helpful for me not because there's anything wrong with having anxiety and depression. But because it was very helpful for someone who needs logical explanation for things to say, okay, that's, that's logical to me. You know, stop trotting, shut up. You're overreacting. Sit down and be quiet and just stop beings quite so much to a child and then for the rest of your life that is going to cause massive dis ease and trauma. Yeah. So then then that thought is like, anything I can do to stop that from happening to Frank is like, I have to do everything humanly possible.

Rina Teslica  25:12  

Why don't you tell us kind of what the day to day living is like for both you and Frank, kind of what does that look like? How do you live your lives?

Bryony Kimmings  25:21  

Well, before the diagnosis, it would involve a lot of drinking in the evening for me to try and block out everything that was going on. In the daytime, it would involve a lot of small amounts of play, putting on the television to go and have a rest in the kitchen and then back in for like, a small amount of play, and then back again, and I recognise that I was. I was doing what I needed to do, but I didn't know why. And so then the evenings will be full of guilt for like, perhaps not engaging as much as other parents could not that I mean, he was getting a lot of my time. But a lot of hiding, you know, resting, coming back. Because Frank’s play is extremely repetitive. Its way feel safe. It's what he wants to do, is repeat. And for an ADHD person, your worst nightmare is to do a boring repetitive task like it’s we’re polar opposites to one another.

Rina Teslica  26:29  

Like how it must have that been so difficult, because it's it goes so against your nature to do something so repetitive.

Bryony Kimmings  26:35  

Yeah, I mean, you, you do it, because you love them. And you're like, I must do it. But you're also making yourself ill by doing it and not knowing why. And then I think that that was causing so much anguish for me, because it was like, why can’t I do this? Like why? Like, what difference does it make if you pretend to be a dog 7000 times in the same game, which is essentially still going on, which is you walk past me, mummy, I'm a dog. I'm lying on the floor. I've hurt my arm. And you say, Oh, this poor dog has hurt his arm. And then you pick me up and put me on the sofa. Right? Okay, I'll do that. And then, okay, again. And then he lies back down the floor. And I have to walk past again and say, Oh, this dog has his arm, you know, and to variate it, I might be able to get away with like, let's see if we can bandage it up. And sometimes he might be like, No, that's not how the game works. But sometimes he might be like, Yeah, let's bandage it up. So, like, why can't I just do that? What difference does it make to me? To do that? I mean, it will drive anyone insane, right? But I think for me, it was like, almost impossible. Anyway, so that was before and then getting annoyed that I get annoyed, you know, or getting or him getting upset because I'd said look five minutes, I don't want to play the dog game, you know. And also single-parenting is super intense. So you don't have someone to go, like I'm having a bath. Get this kid away from me for like half an hour and then I'll be back refreshed. So now it's really really different. It's really different. He's older, so able to articulate himself more and able to understand my needs, he's learned a lot more how to say what he needs and how he feels. He understands that mummy is also neurodivergent so we can both take turns to sit on the fizzy cushion or to move away

Rina Teslica  28:34  

Does he understand that you have a neurodivergence as well. Have you explained that to him?

Bryony Kimmings  28:38  

He understands that I feel like I'm having a meltdown or I feel like I'm fizzy. Or I feel like I need to empty my worry bucket like he does know that I also am the same as him which I think he quite likes. And so we also live with two other people now so we live with my partner and his daughter so there is an element of it being like okay, somebody tag team, which is helpful, but I think more it's and I said this to you when we were talking before we did the podcast it's like “happy mum happy baby”

Lauren Fenton  29:21  

I hate that!

Bryony Kimmings  29:23  

But it's true actually, is true annoyingly. And even more so if you have special needs kids it's like the more I put into my own healing the more I put into my own mental health the more I choose positive dopamine hits over negative, the more I'm able to help him so. You'll see me you know they always say like I don't know if they still say it now but like 10 minutes of play a day is so 10 minutes of one to one play for any child is just enough. And it's like, I think that's bullshit because you need a lot more than that, but Uh, but like, apparently, that's all you need to do. But like, I am having my mind time for him, you know, this is the time this is when I'm actually going to do stuff. And this is when I'm not and that's okay. Like, I'm going to take myself into the garden and do some meditation, I'm going to put him in front of numberblocks, because he absolutely loves it and he needs a rest. And then we're going to have a really good play at this, and I try my best to just organise our lives into sort of, what we both need, I'm drinking less, he's drinking less. Yeah, we're just a bit more forgiving. I think it's more he doesn't quite grasp his own self, yet. He's only seven.

Lauren Fenton  30:48  

What does he understand about neurodiversity then? What have you taught him?

Bryony Kimmings  30:52  

Tricky to know, because they always say, ‘don't tell them like they will ask you’. But I always thought that was a bit mean, because it's like, it's almost like they come asking you once something's happened that's made them feel different or weird. So I just tell him he's autistic. And I say it means it's got a totally different type of brain to most people. Mummy's ADHD, that means she's got a completely different brain to other people. And we see the world in a different way. And we feel differently. And I’ve tried to explain to him that lots of people don't really understand that. And  it's really important for us to understand ourselves so that we can articulate what we need to other people. But sometimes he'll say, I'm autistic. And I don't know whether he's just parroting that or if he actually gets it, but every now and then in the car on the way to school, we'll have a little deep and meaningful about, you know, what happened that's hard. And how do we overcome that and over time, I know, he'll start to really be able to articulate how he's feeling about his autism, but he's actually more emotionally articulate than most kids. I meet, you know, he's able to say, I'm feeling on the verge of a meltdown, I need to go and bounce on the trampoline, I need you to squeeze me. I don't want to get dressed for five minutes until my body's warm,, you know, like, he's completely Yeah. So I think it's a

Lauren Fenton  32:21  

Credit to you and your, your, your embrace, you know, embracing of what you need, what you feel kind of sentiment.

Bryony Kimmings  32:33  

Yeah, he  goes to a really good school that's very inclusive, very small, and lots and lots of people with neurodiversity. So it's not a special school. But it is close, you know, it's sort of he's always been on the cusp of what was not been sure whether or not he should go to a special needs school or not. And I think for secondary, he's certainly not going to be able to go to a large comprehensive 30 kids in a class kind of deal. Probably go to an autistic secondary school. But um, it's very much a place that's like, whatever you want, whenever you need, like, everybody has sensory toys, everybody can leave the classroom like it's a really really beautiful school. So I moved him from quite a full on city school moved to the middle of nowhere to get him into this really, there's like eight kids in this class is just like a comp, like a state school, but just happens to be like a tiny village 

Rina Teslica 33:28

Heaven

Lauren Fenton  33:29  

Does he. You know how you've just described how he kind of, to some extent understands autism, or you certainly there's there's threads of understanding there about difference and neurodiversity? And does he ever reflect back? You know, mummy might need time out, or mummy might need you know, your own neurodiversity?

Bryony Kimmings  33:50  

No. He sometimes asks me if I need the fizzy cusion, like, if I'm getting a bit cross he’ll be like Go and sit on the fizzy cushion. But he is more and more now, he asks me if I'm alright. Like he'll say, like, I might say, Ah, why are people why would you do that like or something because I'm quite get quite fiery about I don't like injustice. And the other day is like, why would you pull out like that, like, you know, car park or something and you put his hand on my shoulder and you when you're I was like, I know I was like not really? And he was

Lauren Fenton  34:34  

So wise.

Bryony Kimmings  34:37  

Yeah, and he strikes my head, my mind. It's difficult, isn't it? Yeah. I feel like the sad thing is, and it's hard to think about is that people are cunts aren’t they! And I'm like the thought of him. Before of people being horrible to like, you know, it's like my worst nightmare. Of course, you know, this feeling is like people looking at him, people judging him people thinking they're better than him. Like, it just makes me want to punch them. But I can see that he's probably going to be one of these sorts of people that says, like, let them just like he's gonna be. I'll just get on with myself. Yeah, I think it's interesting to look at yourself, like I do a lot of transactional analysis, which is, it's like a particular type of therapy that, like, you look at your child's self, and you look at your parents self, and you look at your adult self. And it's like three different versions of you all having a big fight in your head and most of the time, and like when you're doing transaction analysis, you can start to identify when you might be in child mode, particularly like, you're like reacting to something, but you're not reacting in your adult self. You're like, yeah, my toys, or don't put that there are like, you hurt my feelings. And it's like, you're in child mode. And I guess my child mode is like, super defensive, really scared, like really traumatised for all manner of reasons and one of which being undiagnosed neurodiversity. And I'm just like, constantly trying to think that his child mode, which is still developing, I mean, they say it stopped stopped developing child mode at five, but I don't really see that as true, but I just want his child mode to be like, there's a, there's a state called adapted child, which is the one I'm always i,n which is like the child reacts to something the adults do, and it's traumatising. And so the child is in constant fight or flight, really needs a lot of reassurance, a lot of love. And the other side of that, if you've had a good upbringing, or like an adequate upbringing is creative child, which is like free, playing, happy, secure, you know, like, sometimes I can go into that mode. And I'm just like, constantly just trying to get that child in creative, free child, you know, like not traumatised child because all the way through his life, in the thinking of transactional analysis, you revert to that child when you're in distress. So you want to if it's a solid, creative, happy, well built, resilient child, then it's okay. If it's not, yeah, he’ll struggle,

Lauren Fenton  37:32  

It sounds like you're you're Yeah, you are. Parenting wonderfully, and creating that secure child based on I mean, you're just your own neurodiversity, and your understanding of your own neurodiversity, and your own childhood and how, how that's impacted you throughout your life. It's, yeah, it's quite an insight that's allowing you to be the brilliant parent to Frank that you clearly are.

I was thinking I had a conversation with my nine year old the other day, where she was asking me what autism was. She's neurotypical for want of a better term. And, I was describing autism to her. And I kept using the word differences. And she, she was like, but everybody has a different brain, but everybody's different. But everybody feels that's different, like, might have overplayed the differences, like points and the diversity points, but she's so aware of difference because she's got a sibling who is neurodiverse, and she sees tons of kids with different disabilities all the time.

Rina Teslica  38:39  

That's why she's looking at it like that. I think if you weren't exposed, you would be like, people think differently to me, people experience the world differently. Ooh. And that's where that whole thing is from, I think. So Olivia is incredibly lucky that she's seen so much. And it's so yeah, it's just I guess.

Lauren Fenton  38:57  

Yeah, too. But it's, yeah, it's just interesting, because I just think it's so my whole childhood was completely different. Like there was no, it was all it was all about kind of there’s the difference over there. And you know, it was Yeah, I’m sure I was socialised to believe all of these stereotypes that you described at the beginning around autism and ADHD. If I even knew what they were.

Bryony Kimmings  39:25  

Yeah I mean, they do live in a different world now children. Like I think there is more of an acceptance, probably not from the parents, but from the school. You know, often there'll be there's a lot more awareness around things and a lot more sort of holistic mental health and neurodiverse practice in school, but I still

Lauren Fenton  39:47  

We have a long way to go.

Bryony Kimmings  39:49  

think, oh my God, such a long way to go the things people say. You know, the things people say to you or the things that people think and you just don't want to like go outside. 

Lauren Fenton  40:04  

I was going to ask as well has how has like, Frank, and you're kind of neurodiverse diagnoses or labels of autism and ADHD… How’s that impacted on your relationships with others or, you know, you talked about your, your family, your mother, and your own kind of reflections of the jigsaw of your life fitting together, has have other people kind of had that experience of oh, it makes sense now, or not, what's the reaction been?

Bryony Kimmings  40:38  

I think it's a bit like when you have a poorly child, or you have a sick child or a disabled child, and people will either come towards you or they run away. And it's not always the same people you think it will be, you know, you think, Oh, they're a solid friend, and they're headed for the hills. And people that you were like, you might even I don't even really know you come and knock on your door with lasagna. And don't leave until you're okay, again. And I think it's the same with, with, particularly my diagnoses. I feel like you really quickly kind of weed out things that don't serve you, when you realise that you're neurodivergent. You know, you're like, clinging on to toxic friends or history's sake or duty, and then you think that doesn't serve me and that makes me ill, you know, so it's almost like it's sort of like quite a nice way of just getting out the scissors and being liked “bye!” Because actually, I mean, maybe it's also just age, you start to be like, I just don't have time, I don't have time for one sided friendships. I don't have time to hear this every time you know. So I think some people it's got me closer to and other people not at all.

But it's definitely brought new friends like I've, I've sought out ADHD women, I've sought out ADHD queers, I've sought out people who are neurodivergent, one to be role models for my children, and also one to be friends of mine. And it was a really nice moment a couple of times over the summer where Frank was with his dad and got this new house. And it's got a big garden, land and stuff. And it's quite a paradise to come to. And so a couple of times, I've just invited new neurodivergent female friends over and taken some low level mushrooms and just sort of splurged and sat and ate and lit the fire and talked about the world in how we see the world and how it's traumatised us or how we've we, you know, have helped ourselves and it's been a real, to be honest. It's probably the first time I've ever really experienced friendship. That sounds really bad. And my best friends listening will be like, f*ck you Bryony. And I’ll be f*ck you right back. But no, actually, a lot of my friends are neurodivergent. You know, the reason why we found one another now is realising is because we were all neurodivergent. But it's, it was very interesting. I taught a course the other day, and it happened to have like five or six ADHD women on it. And everyone was at the pub. And of course, we were the ones drinking a lot and smoking because that's sort of one of the things that seems to be a quite a common trait. And it was like being in a parallel universe. Because if you'd have watched it happening, you would have just seen chaos because there was five or six conversations going on at once. Like bits and bobs, and chatting across like it would have looked like chaos. But for me, it was like oscillating at the same temperature for once as everybody else. And you can have many conversations at once. You are following lots of different things. And sometimes that's awful. And sometimes it's really beautiful. And for the first time, I was like, oh my god, we're like next level listeners. Like we're just like that. And then I was like this is I found my little tribe and I've never really, I've always been at the edge. And I've purposefully always kept myself at the edge. And normally it'd be like, I've got gigs, so I can't come out alright. Like yeah, it's nice to meet you. But I just had a gig so I've got to go home, you know, like it was almost like I chose that to keep myself out of social situations. And often I'd say, oh, no, I've got a gig. I can't come but I wouldn't. You know, it wasn't that I just didn't want to go or I didn't want I couldn't I didn't want to make I didn't want to address why social anxiety wise I couldn't go overwhelm was I couldn't go and it was like, oh, yeah, this is what it feels like to be with your people. We don't want to leave, you don't want to leave. But with autism, I don't think it's it doesn't seem to be the same like I think of ADHD is very much It needs people it needs input it really low, low level dopamine. So you need excitement, you need to gather, you need to be doing like, it's like you need to be doing star jumps. As soon as you wake up in the morning, you need to get that dopamine into your brain. And autism seems to be quite solitary, quite self assured. I mean, I don't know about mental health with Frank. I think there will be mental health issues that  just come from not feeling like you're part of something, or maybe not even that maybe feeling like you don't quite fit. Because the world isn't built for him. You know, he's living in a world that isn't designed for him, essentially. And he's having to do all the adaptations to make sure he's okay. Putting on all the armour to make sure he can handle it. Not at home. That's completely the opposite. But like, so I feel like, Yeah, I can't even remember the question, but I feel like I need to absorb people, and he needs to just be left autonomously alone.

Lauren Fenton  46:20  

How do you do that? Then if you’re both.. is there just… is it having a large enough house in the country?

Bryony Kimmings  46:26  

Luckily, for me, he's, I'm his person. Like, I mean, luckily, and unluckily, because he won't leave me alone.

Rina Teslica  46:36  

But that’s good for you, because  you need him.

Bryony Kimmings  46:38  

Yeah, I mean, unless it's the repetitive stuff.

Rina Teslica  46:41  

It's a constant.

Bryony Kimmings  46:42  

It's a constant balance. Luckily, we bought, so we bought this new house, it's got a big fence around it. So it's like a sort of wild acre garden with like little zones and stuff, which we are turning  into like a permaculture site, but it's got a fence all around it, not that Frank would ever, you know, he's not the sort of kid that would ever go beyond the fence anyway, but it's like, it's got lots of different zones. So I feel like more so now than when we lived in this flatt in Brighton with no garden, you know, it's just intense. And in a pandemic, now, it's like, more and more he'll go off. He likes to stare up at the trees a lot like it's one of his favourite things to do is to stand in the trees and to hear the noise and to watch all of the leaves moving. So, and I think more and more as he gets older, that will be you know, he'll find his way of self soothing or finding his own joy, because I think he looks to me quite often to be like, Is it okay? but more and more, I think you'll, you'll just be like, oh, there's Frank over there. enjoying that. Loving that moment.

Lauren Fenton  47:56  

But yeah, I think you've described it to Rina and I prior to recording, as a neurodivergent utopia. What is your neurodivergent utopia that you’re creating?

Bryony Kimmings  48:09  

Well, it's about it's about social model of disability, you know, like, it's about not only teaching Frank, that there's a medical model, which tells you that you're lacking or that you've got something different, that's difficult, or that you've got the kind of, yeah, you've got, you're not normal. Essentially, there's something wrong with you. And then there's a social model, which is the belief that the world is designed wrong. It's not designed for everybody. It's designed for people that are able bodied, or people that don't have neurodivergency or to have learning difficulties. And it's not the person that's wrong. It's the world. So if that's the case, which is what I'm trying to always tell Frank, like, if he doesn't like something's too loud, it's too noisy. It's too bright. I don't see it. That's not your fault. That's not designed for everybody. It's not right. It's not designed for everyone. So that means that if I've got this place, I can. It's mine, I only can do what I f*cking want. And I can turn it into the perfect place for us. You know, there's two non neurodivergent people. There's two neurodivergent people with very opposing neurodiversity. So the idea is that by talking about our needs and our wants and how we feel, we can create space for everyone to exist feeling like it's designed for them. So for example, the first thing we had to do was change Frank's bedroom. Even though we're probing we're probably going to probably knock this house down, it's like falling down and it needs to be like, either like huge amount of money spent on it or we're going to knock it down. But his room. It had to be changed. It was black, black and white beams, and it was all wonky. And it was Like, why is my room a slide and a prison is the first thing he said when he was in there, because it's like black and white bars and the floor was like, literally seven inches higher one end than the other. So of course, it's like, you know, back in the day they’d be like, “shut up and go in there”. You know, like, “that's your bedroom”. Like “you think yourself lucky, you've got a bedroom”, you know, that's the sort of attitude I would have had from my parents. So level the floor, make everything soft, double thick underlay, paint the ceiling white, like, make everything in there. I mean, parents do this with their disabled kids all the time. But it's like, recognising the fact that until you do that, until you make that room accessible, you can't be in it. Like it's not fair for him to live in a world where it's like, that's just how it is.

Sensory garden is happening this next summer, like smells and sounds for him are just like, I think I think when he's in nature, it must feel like it seems to feel like how I feel in nature when I've taken a few drops of mushroom oil, like which isn't, like I'm not talking about doing going on a bender, I'm not drinking alcohol, I'm just taking a slight amount of psilocybin that gives everything a really different sparkly, intense, very hyper-focused glow. And I think that that is what happens to him when he's in, I can see it like he walk outside and he could listen to a bird. And it's like, it's mainlining like euphoria into his body, his whole body vibrates. So like, I'm making him a garden, it's gonna have lots of bees, and it's gonna have bee hives, it'll smell insanely good, different areas will smell of different things, the sound of things, the height of things, just like what do you feel? And what do you need? I feel like I need to be in nature 80% of the time, then boy, you are going to be in nature 80% of the time, if I have to take the wall off the side of the house and make it glass you will be in nature, you know, like it's just, I, you know, I believe that he… not to spoil him not to make it like not, it's not that. It's what does the world look like, if you listen to what people need? You know, not us, they're like, Will and Leila they need. She needs a Lego room. It's like fine. Like, she just wants to do Legos. So and on her own. So she has a Lego room. Like it's small and it's she's small, and it's Legos and this is where I go to do my Lego

Rina Teslica  52:39  

Makes sense. It's things that make you happy ultimately, things that just make you happy. Things that make you happy.

Lauren Fenton  52:46  

I think we want to come and visit this utopia actually. It sounds glorious, honestly, like we're gonna have to descend at some point! 

Bryony Kimmings  52:53  

You can! I would really like to have a lot more land and a lot more. You know, like I would like to have like a place that people can come and rest and have you know, I don't I don't think it exists enough specifically. You know, respite something, but… I have a friend who does this thing called I can’t remember what it’s called It's so annoying. It's like he went into mental health hospitals and he asked the the patients to redesign the hospitals. It’s called something like “something asylum” not fame asylum, its something else. And you know, when they looked at what they needed, soft furnishings, soft cushions, different colours, less medical equipment. You know, the idea that just asking people what they need is, doesn't really happen. Like more land, so I can just like make little pods like this is the sensory deprivation pod. And this is the one where you get to hear only the nature around you like, you know, we're not I mean, we're not connected to the nature in the planet. Anyway, you know, as human beings. My partner has this really strong feeling that there's a nature deficit disorder as well as an attention deficit disorder, there's a hole in most people that needs filling in, they fill it

Rina Teslica  54:18  

They need that grounding. Like socks off the ground can believe that for sure. I think what yeah, there's I feel like there's definitely I noticed it like in winter, because obviously I'm not going to like go to the heath. Then take my socks off and just like run around the heat. When it's like zero degrees. I can definitely feel the you I can feel it like the minute it starts going into autumn. And obviously the SAD it's just like a mix of everything. There's definitely, it's a shitty season until i gets warmer and then you can like you

Bryony Kimmings  55:02  

Recently I've been looking at the pagan calendar because Frank's. One of Frank's obsessions is celebration, right? Like it got really bad at one point. It was like, What? What today is? What? What's the day? It's a national holiday, national waving day. It's national everyone wears yellow day, like it was like, whatever day it just had to be a day. But I started to get like, the feeling that a lot of that was kind of capitalism. He was like, What am I getting today? Okay, let's, let's do something else. Let's do something else. So I started to look at the pagan the pagan calendar, and you know, not to be too hippy about it, but like the way in which the seasons work and the celebrations of the seasons. This book was describing how the solstice is the beginning of the year, because it's the darkest day. Yeah, and everything after that gets lighter. And I liked that. Like, I was like, Oh, I can deal with that. It's like just a few more weeks until it's the end of the death and the the birth begins. And I was like, okay, good. So yeah, lots of trying to teach the kids about how to plug into what's around us like, self sufficiency. You know, the fact that soil has a natural serotonin in it, like, trying to plug ourselves back into nature, because we have the luxury of being in this land, and something about it is healing.

Lauren Fenton  56:24  

I don't want to bring us down after such a positive discussion. But what have you found hardest to get right? In this? I guess creation of this neurodivergent utopia, or the way that you're parenting Frank? What's been the hardest thing for you to?

Bryony Kimmings  56:54  

I think the hardest thing for me, not for him, for me is that learning about ADHD means that I've learned that we're very hyper sensitive to emotions. So perhaps the feelings that we're feeling are over, over, they're bigger than most people would feel. Right. So if you feel rejected, you feel like 50 times more rejected, right? That's like one of the symptoms of having ADHD. And it's definitely one of mine, particularly when I'm in a hormonal period of time. And knowing that, logically, I understand that I can hear it. But mental illness, and mental health is the same feeling it gives me this real headf*ck moment, which is like, I know the logic, but I'm also feeling the feeling like, there's no way that you can tell yourself, stop feeling that feeling, you know what I mean? So like, that feeling of, of trying your best not to be hurt by something or trying your best not to feel completely at the edge of something, while simultaneously kind of being like, it's okay to feel all these emotions, like I found it, I find it quite confusing. And I found it really difficult to for awhile, I was just trying to censor everything, which then you know, if you try and censor your emotions, you absorb them, it gives you illness inside So I think the hardest thing has been to have volcanic emotion and try not to, if it erupts to not spend the next week feeling just awful, you know awful you exploded or awful that you were short or awful that you couldn't deal with it that day. Like it's been really hard to forgive. It's been really hard to love myself enough. So that's been hard.

It's also hard trying to I think one of the hardest things with Frank is trying to understand what he needs like he's quite, he finds speaking difficult. So he's not nonverbal, but he's not. He doesn't speak very well. yet. So and also he's, he's autistic, he doesn't know what it's like not to be Autistic to sort of say what's going on in there. He's like, Well, what's always going on in here, you know, like, it's not, it's just not have consciousness enough to be able to say, well, I assume that you don't feel like this so I can describe to you kind of how it feels. So sometimes I just, I just want to like, climb inside his head and just be like, tell me I don't understand, like, I cannot understand, I  don't and I feel so stuck and I can see him trying to explain to me and I'm just I don't understand and that's very painful, painful because you can see it's painful for him, you know? And the worst is to see your children in pain, isn't it? But yeah, so it's difficult sometimes sort of waving across the two planets that we're on and being like, I'm here, but I can't help right now. And he's like, I'm over here. And I don't understand why you can't just come. I think another difficult thing was probably accepting. When I realised that my I, Myself was neurodivergent, accepting that I had been very, very ableist towards my own child, you know that I’d ‘othered’ him. I'd been like, yeah, he's disabled. Yeah, he's over here. And he's like, Yeah, we're trying our best to just like, get onto his planet, but I can't do it. And like, that's because he's disabled, you know, like, and that thing of like, oh, actually, I've been doing that. I until I realised that that had happened to me. I wasn't able to sort of look at him with perhaps the empathy I can now which is like, oh my god, like, I've been othering you since you were ill. Like, since you were born. How does that? How has that affect you? Like? Yes, it's a really difficult thing to admit, you know, because as a parent of a disabled kid, you want to be like, Look, man, I'm the f**king biggest disabled champion there is out there. No one can f**king mess with me. Like, I'm like, I'm so down with all this stuff. So then to sort of realise, oh, wow, I've been applying the medical model of disability to my own son. It's like.

Lauren Fenton  1:01:34  

and the guilt that comes with that, I guess. But, yeah. But it's, but then that's because you've lived in a society that's told you that your entire life.. So it's not Yeah, it's, it's the fact that you're aware of it now, that you have that empathy is going to serve Frank so well, in the long term.

Bryony Kimmings  1:01:55  

Have you ever feel like that feeling of like, why doesn't everybody else just get with the programme? 

Lauren Fenton 1:02:03

All, every f**king day! 

Bryony Kimmings 1:02:05

You just want to shake people and just be like, like, this isn't a podcast for people that already know this stuff. This  is a podcast for people that have just had no idea what it's like to be, you know, to be dealing with these things, either as a parent oras a child, you know? So you don't f**king know do you, until it happens to you?

Rina Teslica  1:02:30  

Which leads us on really nicely to your f**king normal. What is your f**king normal?

Bryony Kimmings  1:02:38  

Oh okay, so I decided that my f**king normal was so my f**king normal is playing the dog game for the 7000th time. While simultaneously doing star jumps and trying not to drink wine.

Rina Teslica  1:02:57  

You know, I can picture that so clearly in my mind. Yeah, the visuals.

Lauren Fenton  1:03:02  

I feel like I could incorporate wine into the dog game! 

Bryony Kimmings  1:03:08  

Yeah but I’m trying  not to. Oh, no. Well, I think I think that we've got this thing in our house called the dopamine menu where you take your like, I feel low dopamine, instead of being like, what the hell's wrong with me? It's like thinking of it as a diabetes thing. It's like, I don't have enough sugar in my system. I have low dopamine. What are the things that I can do to build up my dopamine? And when my dopamine is at a good level, I can play the dog game till the cows come home. Do you know what I mean? So it's like if I do star jumps, instead of drinking wine, I can play the dog game for the 7,000th time. And that's my f**king normal.

Lauren Fenton  1:03:43  

Brilliant brilliant. Absolutely brilliant. Thank you so much. It's been fun,

Rina Teslica  1:03:51  

Though, so interesting. You are incredible. Thank you for being so open and honest. Interesting and fabulous.

Lauren Fenton  1:04:02  

Thank you so much for listening to the f**king normal podcast. We love making this podcast. Yes, we do. We are part of a much bigger team. Almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences.

Rina Teslica  1:04:23  

So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at fkingnormalpodcast.com That's f k ing normal podcast . com. You can join us on Facebook and on Instagram at fkingnormal_podcast. That's f k ing normal underscore podcast. You can get all the links and more information in the show notes below.

Lauren Fenton  1:04:47  

So thanks so much for listening all the way to the end. We'll see you next time. 

Rina Teslica  1:04:48  

Byeeee "kissing noise"

Episode 7: Advocacy

~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

 Lauren Fenton  0:17  

This is the f**king normal podcast, the cheers, tears and Friday night beers of parenting disabled children.

Rina Teslica  0:24  

I'm Rina,

Lauren Fenton  0:25  

and I'm Lauren.

Rina Teslica  0:26  

And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories, and chat about the things that we've learned and are still learning.

Lauren Fenton  0:40  

Prepare to sometimes laugh, sometimes cry, but hopefully leave with a shot of optimism in your arm. And don't forget we are talking from a parent's perspective. We would never presume to talk on behalf of a disabled child or adult. So expect bad language and quite frankly some brutal honesty.

Rina Teslica  1:00  

Because really what the f**k is normal anyway?

Genevieve Porritt  1:15  

Hello, and welcome to the last episode in this series of the f**king normal podcast. Things are a bit different this week, the f**king normal community have asked to hear a little more from our hosts. I'm Genevieve you may recognise me from episode one where I had the honour of being the first podcast guest. Well, now it's my turn haha. And today I'm going to be putting our hosts in the hot seat and finding out more about their stories.

Lauren Fenton  1:52  

I mean, thanks lonely Gen, for coming back.

Genevieve Porritt  1:55  

It's the nervousness. I think. I was gonna ask how are you both and how are you feeling about being on the other side of the mic? 

Rina Teslica  2:05  

You have all the power, which I hate. So,

Lauren Fenton  2:08  

yeah, you know, I feel okay about it. I guess we just need to, yeah, tell a bit more of our stories.

Genevieve Porritt  2:15  

So the theme of today is going to be about acceptance, something that has come up really often in all of our episodes with our other guests and something we'd like to hear more about from the both of you. We'd like to hear about the stories from the beginning, all the way to where you are now. I'll start with a little introduction to our wonderful co hosts. Lauren is mum to Olivia and B and lives with her husband Patrick in North London, originally from Newcastle upon Tyne. Lauren has lived in London since 2005 and now considers herself a bit of a southern softy. As well as hosting the f**king normal podcast. Lauren is a school governor, Governor a fellow pond swimmer wonderful pianist and runner. In fact, she's off to do the London Marathon this weekend for Great Ormond Street a cause as you can imagine close to all of our hearts and our wonderful Rina mummy to Lua and a fellow North Londoner. Although not born here, she has lived in the city since her parents emigrated from Kosovo in the 90s. Away from motherhood and podcasting. Rina is a copywriter for an online beauty retailer. She loves yoga, True Crime podcasts and a good cold pint with the f**king normals. So let's find out more.

Why don't we start with you Rina. Tell us about pregnancy and Lua's birth and how things were in those early days for you and your family. 

Rina Teslica  3:54  

I fell pregnant with Lua out of the blue. She was an unplanned pregnancy, but obviously very happy. And then in the initial scan, they kind of found that something was amiss with her nuchal fluid being kind of triple what it needed to be. And we had the amniocentesis, which came back clear, that in itself was like, incredibly stressful. Just the waiting, like you've done something and then you're just waiting for the answers. And it took a good like two weeks and I swear to God, I was like, glued to my phone, just waiting for that doctor's appointment. And when they call It's so annoying. Why did they do this? Like we're working so obviously it goes straight to message. And then they're like, can you call us back?

Lauren Fenton  4:40  

Yeah they're not allowed to give the information in a message...

Rina Teslica  4:43  

At least say like nothing to worry about or say look, it's quite urgent, do you mind like ringing us back. So you kind of like put to bed basically your stress but no, it was like Can you call us back? Oh, can you come in actually it wasn't even call us back. Can you come in? I was like, really? Oh yeah. I was like, shit, man, this is crap, this is gonna be something awful. We went back and it was clear. I was like Jesus Christ, like all of that for this, you know. So from then it was much calmer. And I kind of got to enjoy our pregnancy a little bit more. I was like, okay, cool. And then your body starts to change. And that in itself is something else. And then we had another scan, and they kind of were like, Oh, hold on her heart, there's something amiss. But we can't tell from the scans, what's going on. But there's something and I was like, Oh, not again, like, what is this? But I think my anxiety because of kind of that initial 12 week scan, I was like, Oh, God, there's something going on. So Lua would just never be still during the scan. So we never got a full picture throughout the nine months at all of what was going on. So there was always a question mark of, everything's fine. She's growing right. Like she's meeting all the bits, the percentiles of growth and head shapes fine, and all the fingers and toes and everything. But just there's something. So it wasn't until she was born that we kind of got more of a picture. She was born. My birth was very relaxed. I had lots of classical music. And it was just, I could not imagine a better birth. Considering all the stress of the pregnancy, the birth was like the best bit. And yes, I was drugged to the nines, but it was like, relaxing, and it was fine. And she came out. They put her on my chest, but she was blue. And then it was like, Oh, crap, had to be intubated immediately shipped to the NICU. We had, they'd already told us that she would go to the NICU immediately, because there was this question mark about her heart. And obviously, it's when they're little and heart conditions, you know, it's quite deadly if it's not picked up and treated immediately. We always assumed that it was something that could be fixed with a surgery once she was born. So we kind of went in with that idea that there's something going on with the heart, and it could be fixed. And then she'll stay in hospital for a bit, and then we'd go home. And that would be that. That's it. So that's kind of how I went into it. And I was prepared. Like it wasn't when she was taken away to the NICU. It wasn't like a shock to me. It was just like, I already know that this is the journey that I'm on. Right. So I'd already accepted that I wouldn't have her in the ward with me and all of that.. 

Lauren Fenton  7:29  

Was that helpful at the time do you think? 

Rina Teslica  7:31  

Oh, yeah, massively.

I think it would have been much worse if she was born. And then suddenly, they're like, Oh, God, we're going to intubate her, I'm going to take her away from you, I think I would have lost my mind. But I already knew that that was going to happen, I already knew that Arbs would go with her. And that's, that's also why my mum was at the birth with me. So she'd say with me, and he was off with her. So I wasn't alone. Which was very helpful. And I love that having said that, once I had given birth, obviously, I had to be moved to a different ward. And I was waiting there had the curtains drawn, I'll never forget, and this woman put this woman in that room, there was like three other women in there, all were the curtains closed, so we couldn't see anything. She was like moaning clearly in labour. And they were like, hold on, hold on. We're just getting the room ready for you. Like, hold on, don't push. And she was there. And she happened to be Albanian. And she was there with her husband and her two sons because I could hear them talking. And she was in labour. And she says to her husband in Kosovon, and like, go and get me some water. Just get out of here. So she shipped him off. And she starts going, Oh, my God, oh my God, oh, my God. And then all I hear is "waaa" "waaa" and she like, just gives birth. I was. It was that moment where I was. I just broke down, was like that bitch, gets to give birth in five minutes and has her baby on her chest. And it's all fine. Like the nurses rushed in and they were like, What the f**k? We told you to wait, but also Oh my God, and they measured him and I could hear it all. And I was just in tears. And the nurse my nurse came in like open the curtain saw me and was like, oh my god, I'm so sorry. And she just moved me away. Thankfully, they put me on a ward with other mums whose kids were also in the news. So none of us on that Ward had our kids with us, which was so helpful because I couldn't stand hearing other children like other babies crying and mothers dealing with our kids. So it was very nice to be on quiet room. I think that's just incredibly important. I think I would have it would have just been horrible if I was to hear other parents but anyway, so I was that bit upset me but also, I already knew that this is kind of how it was going to be. And then we I went to see Lua and like six hours after I'd given birth to her and she was there taking the intubation out that she was wasn't intubated. She was asleep. but she looked so peaceful and sweet. And I wanted to pick her up and the nurse was like, No, you can't hold her yet. So I've got pictures of me with my hand on her tummy. And that's it. And I was like, I was immediately like, Who the f**k you to tell them what to do with my kid. But also, she's connected to all these cables. I don't even know how to pick her up. And all the motions, so I was quite bitch. And I thought why. Also, I was like 25, and a bit of a, that she's my kid. And she's like, she's been poked and prodded in touch so much, in her first six hours, just give her some time to just calm. And that also then made me feel really selfish. So I was like, Okay, fine. But it's your natural instinct, as a mother to want it you. You need that hormone in your body is asking to connect to that baby. So it's come takes you completely out of what's coming natural to you, too. Was the six hours because you'd had an epidural. So yeah, yeah. Yeah. So it was like, but I slept. And I was, it was such a strange kind of time, because I had kind of given myself like, I don't even know how to describe it. But I had just given myself up to this situation. So I just went with the flow, like, Okay, I've given birth, she's over there. I'm going to rest. And I'm not going to think about anything else. So it was like, very calming, I was really calm. I don't know if it was just like, all of the hormones or something going on, in my mind, but I was just really calm. Like, I think if that had happened to me, now, I would be a mess. But I was just calm, like, Okay, this has happened. Let's get on with it. It was also I think, quite a, I think I detached from the situation quite a lot. And it wasn't until kind of a couple of months later where other things went on that like the penny dropped. And I was like, Oh, shit, oh, this is life now. So it did take a long time for me to kind of accept the situation. A question on acceptance there.

it was just it was a whirlwind. Anyway, we ended up being in hospital for seven and a half months. And wow, yeah, at four months, she got her tracheostomy. So those four months, it was like touch and go every day. We didn't know whether she'd survive like that day. And I think I blocked out how dire the situation was, until a nurse, I became friends with the nurses there. Obviously, you're spending like 12 hours a day there, you'd inevitably gonna get talking and make some really strong connections. And I think one of the nurses realised that I was not understanding the situation, like what what's going on or how where Lua is in terms of her health. And she said to me, I think it was horrible. But also I needed the reality check. Like I needed to understand what was happening. She said, I was looking through, you know, at the end of the beds, they have the paperwork with all the drugs and things and the charts and whatever. And we're not allowed to look at it. And I, which is ridiculous, because it's like your child, you should be able to know what they're writing about your child what's going on, whatever. Anyway, she had like three different drugs on the side, that they weren't on her charts. And I was like what's this. She's like, do you really want to know? And I was like, Yeah, of course, like, What the hell is it and she's like, we have Lua's three meds in case her heart stops and what to do if she passes, or if she's dying, basically, we have that on her chart at the top of the page, because we are waiting for it, basically. I was like, it's something they'll need to know immediately, so it has to be there. And I was like, what?, what?, what do you mean, her heart's gonna stop? She's like, her heart rate. It was like 220 That was like resting heart rate. Yeah. Which is incredibly fast. baby's heart rates are fast anyway, but that's like, double what it should be. They're like, usually in the hundreds and she's 220s resting, sleeping. So they were like, it looks as if her heart will stop because it's gonna give up if it's beating that fast. You know? I was like, Oh, shit, what the f**k, and I kind of like, dropped. Just it was just it was like a tonne of bricks. And I was like, Oh, wow. Okay. And then I was like, Okay, I'm going to love this child as much as I can, while I'm here. It gave me more motivation to like be there even more consistently. So like, I wouldn't even go downstairs to get a sandwich and go down and get it to eat it by her bed. So I would not leave her side at all until she got her tracheostomy. And I think that just changed her life because her heart rate was beating so fast because she needed to breathe. So that's why her heart rate was so fast. But once you got the tracheostomy, she could breathe easier. So her heart rate came down, the drugs disappeared from the charts. She was much calmer. I started to take days off. So my mom would kind of be like, I know you're obsessed with being by her bedside, I will look after her for like, three, four hours. Go Go away, leave us even the nurses would say, enough. Just go

Lauren Fenton  15:29  

How did that feel at the time? Could you do that?

Rina Teslica  15:33  

I was so exhausted. And yeah, I was like, I need to get away. But then the guilt when you're away, you're like, oh, man, what if something happened, and I will never forget. One of those days where I took a day off and I literally just went, I wanted to do something normal, and something that I used to enjoy doing. So like I wanted to go shopping. I hadn't been shopping since pre like buying baby clothes and like the enjoyment of that as I want to emulate that kind of vibe. So I'm gonna go shopping. I was out for an hour and the nurses called me they're like her heart rate is really high. Come back. And I was like, Oh my f**king god, what? I ran back literally, I got back to the hospital within half an hour, walked in, I picked her up, sat down. And I just watched the monitor a so it was like to something dip, dip, dip dip dip as soon as she was immediately Wow, it was like insane. I was like you little shit. You missed your mummy, you didn't even want me to have like a day off. And the nurses would laugh because I was self preserving in that time, I didn't. I was too afraid to build a connection with her. I was like she could go at any time. So I can't I don't want to build a connection with her just in case she goes. 

Genevieve Porritt  16:51  

Were you actually cognitively thinking that though or that you're now you look back, you realise that?

Rina Teslica  16:56  

Now I look back, I realise that's what I was doing protecting you protecting myself. So I knew she was my daughter. I loved her all of that. But I didn't want looking back to be as connected to her and I because she was watching us and kind of just laying she couldn't turn she couldn't lift her head. She couldn't do anything. So I didn't realise that she had already built a connection with me. I knew that she had built one with us because he does skin to skin with her immediately. So when he would be around her eyes would just be drawn to him with me. I would be like she thinks I'm a carer. She thinks I'm a nurse like she has no, she doesn't understand that I'm her mummy. But when that happened with a heart rate dip here I was like, oh,

Lauren Fenton  17:39  

She's like you're not going shopping without me mum. We are shopping together from now on okay.

Rina Teslica  17:45  

I needed that. And it just it started that process of me building that connection with her because I realised that actually, she feels something for me. It's very strange. And like very, you don't realise these things as you're living through. I didn't realise any of this until I had therapy. And you start to think about how you acted previously. But anyway, so that happened. And then so that was four months. And then once you have a tracheostomy, you have to have your your home ready, you have to have carers in place. You have to be trained in order to deal with the tracheostomy and the tapes, and oh, Allah. So it took another three months before we were signed off to come home. So then once I came home, that was a whole other. It was petrifying. And also because I had, I had left her alone with nurses overnight, and then in the mornings or whatever. Like when you're in hospital, you literally, you get very spoiled as a parent because you can literally be like, hello, I need some help. Can someone run her a bath? Can someone get me this? Can you get me this? Did it uh, when you're at home alone, because you're obviously Arbs went back to work, home alone with this baby, who was connected to these machines and fully my responsibility now. I was petrified. I was so scared of like everything. 

Genevieve Porritt  19:14  

And now eight months older, eight months old, as well. So you hadn't had the full experience of everything of I don't know the amount of nappy changing that there is the feeding and all of that there was... no. 

Rina Teslica  19:30  

there's like, here's your baby. She literally felt like a newborn. You know how like some parents say: they give birth to this kid and then off you go, is your responsibility. Yeah, literally, it was so scary. And obviously I had the carers in the night. So once when they would come in, I'll be like, hoof, I can breathe like now she's your responsibility and I get to go and like, relax, because it's intense. Although she wasn't doing much she wasn't feeding like everything was machine operated. It was still petrifying because she'd been so unwell for so long. And like the tiniest sniffle, a little bit of a runny nose, I'd be like, Well, that's it. We're being shipped back, of course, I was constantly worried that they were going to take away 

Genevieve Porritt  20:15  

on a much higher level than other mums would be with their newborn. 

Rina Teslica  20:20  

Yes. Wow. Yeah, it was intense. It was crazy.

Genevieve Porritt  20:25  

I suppose as well, you hadn't had the experience that other parents may have had with going to mother and baby classes and experience of seeing other children's similar ages? How did that affect you then being at home at that point? 

Rina Teslica  20:46  

it was... when we were in the hospital, we were on a ward with children, there was two other children with tracheostomies and another little boy who had similar, he didn't have a tracky, but he was very similarly ill like Lua. So we had like a sort of gang in the room. So she had some engagement with other children, but it was not. It's in a hospital setting. Like there's only so much you can do, you know. Once we came back, I was so scared that she'd get ill, or something would happen. I just retreated like, I would not go to baby mum, baby classes like at all. I left the house to go on a walk when I got really depressed, and I needed to get out the house, or go and take her to appointments. And at that age, she had appointments like three times a week, every week, it was intense. I wouldn't leave or anything else. So I just wanted, i'd finally had her back, like not back but like I had her all to  myself was not going to spend any time doing anything else. Just bonding and trying to build a bond and try and keep her healthy, happy and safe. So I didn't do anything else. It was intense. I forget, I really forget how much we had gone through. Like you are honestly like on a train with like blinders on. And you're just as a fellow guest said you just keep trucking like yeah, just don't think about it until

Lauren Fenton  22:20  

you've got no choice. Yeah. My early days experience was quite different. I was, I think, largely in denial, for at least the first year of her life. And so I was at that point, trying to do all the interaction and young baby stuff, the stuff that I'd done with Olivia. So it's sort of had an experience of it that I tried to sort of semi replicate with Bea and yeah, and keep busy. And that was kind of not perhaps what we both needed at times. I guess I'll tell my birth story as well. Yeah, it just to kind of Rewind. So pregnancy was relatively normal and very similar to you, my birth was... I mean, god every birth's different and and then every birth at some at some level, even if it's horrendous, is beautiful. But I feel like Bea's birth was it was so quick. I mean, it was like three hours. She just like wooshed out. Wow. And yeah, the one thing I remember really is feeling like my body completely just was like, don't even think Lauren, I'm taking over. It knew what to do. It knew exactly what to do and in fact in the hospital. Like when they went in. They were like, oh, not sure that you're in and they looked to me. Oh, yeah, you are. Like I was like four or five centimetres. Anyway, so yeah, she came really quickly. And it was all like a blur. I didn't have any pain relief or anything. It was all just so fast.

Rina Teslica  23:50  

Kudos to you.

Lauren Fenton  23:51  

Well no, it was like it was kind of no choice. It was just, this is happening now. Yes, it's happening now. Anyway, so she was born and they did the initial you know, weighing the baby and stuff. And then she I had her and then Patrick went home because we had a one year old at home. So he went back to see Olivia who was with my mum. And I stayed overnight. And because it was late, I ended up staying in a room next to where I'd given birth on the labour ward. And I was kind of left on overnight on my own with Bea and I knew something was not quite right. I hate saying that. But you know like something there was she was struggling with feeding. I couldn't get her to feed. I kept buzzing the nurses all through the night and they kept coming in and just being like, Oh, it's just all this mucus from the birth. But I just had this feeling. Anyway, next morning I sort of put it back in my mind got her dressed 

Rina Teslica  24:51  

Going home outfit? 

Lauren Fenton  24:52  

It was like a first because we had to go to have the proper head to toe review, which gives you another room for that. So I put her in like all these clothes and then she went in the little trolley thing. And I was taking photos of her like this is her first little trip somewhere. I mean, it's just so ridiculous, isn't it but we all do it. Patrick hadn't got into the hospital yet. And I was like texting him saying, Come on, come on in. And there was a nurse and she looked at Bea and she wrote lots of things down and I was kind of just standing up being fussy, you know, not new mum, but you know, fussy mum. And she said, Okay, so she's got a cleft palate. And I think she's got Down syndrome. And just, I was just like, what, what did you say? And I was like, standing up. So just sat down. And I was just, you know, obviously, as well, I've just given birth, my head wasn't in the right place. And I just remember being like a big punch in the gut, what is going on now? What thing to say, yeah, it was really strange the way she delivered it. And then, because she'd said the word Down Syndrome, lots of people were rushed into the room and like consultants and stuff to do a proper review of Bea. And they said, clinically, she doesn't have Down Syndrome. She does have the cleft palate, she has some other things going on. And then at that point, Bea had some problems breathing and went a bit bluish. And then they whisked her off into the NICU. And I was left in that room with the woman who told me.

Genevieve Porritt  26:31  

So they confirmed that she didn't have Down syndrome? Yeah, they did. So did they apologise?

Lauren Fenton  26:36  

 Yeah, so they did, I guess all a bit blurry in that period. So we went into she went into neonatal, and they had to run a whole bunch of tests, because also she'd had this breathing episode, because there were a few things that were noticed. So she actually was fine. Like her breathing was fine subsequently. I think it was to do with the cleft palate and just and she had to ban and a foot abnormality like but they kept just saying, Oh, this can happen in utero. So the cleft palate and the feet, they put down to her being a position in utero. And I'll never forget the consultant, she just every time she saw me, she would just be going, it's nothing more than that. It's nothing, it's nothing. And they ran all these tests, or we went to GOSH, to the cleft team. And then we were discharged eight days later or something, so we weren't in for that long. And then a week after that, so when Bea was two weeks old, we went back to the hospital for another heart scan, another checkup. Because it we were just going off a list of all the major organs that they needed to have various test on look at I think it's because they sat down syndrome, it kind of kicked a process in, as well as Yeah, as well as the fact that there were some abnormalities spotted at birth. And the scan was fine. And they were like, oh, yeah, the heart's fine. The cardiologist was like all like cheery and like, the way he delivered the news. And we came out and the consultant had come to meet us. And she said, we've got back some results. I'm just going to find a room. In my head, I never connected, why she would need to find a room. Like talking of acceptance, I think I found it really hard in a hospital in those early days that I couldn't breastfeed. Bea never breastfed. And I found it really hard, knowing that she had the cleft palate, and she had the foot abnormality, and she was quite small. And some of the little things that we we knew about, I'd been processing and trying to accept. And I think I'd got to a point where that was like, oh, that's like nothing, and I totally accept it. And Bea is brilliant. And she is brilliant. Regardless, full stop. Yeah, it was in a really good place. And then they took us into the room and said, we ran all the genetic testing on her blood. And we've found that she's got 18 q deletion syndrome. And Patrick and I just were completely blindsided.

Genevieve Porritt  29:05  

So you hadn't considered that there was an overriding condition. That these were the symptoms.

Lauren Fenton  29:11  

No I think, well, one because we just hadn't. I didn't think like that it hadn't crossed my mind. But also they just kept saying to me, it's fine.

Genevieve Porritt  29:22  

That's the only information you can take, is what they're saying. Yeah. So yeah, that's a very quick diagnosis. 

Lauren Fenton  29:28  

Yeah. So I think there's like there was definite benefits to that, in that we knew from like day dot almost that you know, there was some potential I hate saying challenges, challenges that we would have to overcome, but we knew but there was a lot of unpredictability, like a lot of like all of our kids, some kids are impacted more severely than others and it will impact on different things and there's a huge like variation within 18 Q, and a lot not known and very few case studies. So we were given these case studies to go home with, and a little leaflet print out. And we went sat in a cafe, I'll never go in that cafe again. And, and just distraught. And then we went home, like brave faces for Olivia. And then at night, I remember phoning our parents and hearing Patrick, like, broke down on the phone to his parents. And it was like, like, I've never heard him cry. He's not. He's just not somebody who's emotionally breaks down like that, and feeling quite? I don't know, it was just, it's just a strange, surreal time, isn't it? So yeah, that was that was birth story. And then yeah, we had the support and the interventions and all the appointments that you know, like out of hospital constantly, and I think I just thought I could be superwoman. And

Genevieve Porritt  31:08  

I'm curious, because you had that diagnosis so quickly. So Dylan wasn't fully diagnosed with a condition until he was three years old. And I think that put me in a state of denial, because not having the diagnosis, and therefore any examples of what could happen in the future, I was dead set on him being able to walk and making sure that that was going to happen. So physio was top of the list to do every day and everything, all the other treatments, occupational therapy, as well, and anything we needed to go into hospital for. And I'm curious as to whether so you had a similar similar that I think we both have similar ways of needing to control everything. And that sort of sense of denial, in a similar way of that detachment, that you've had Rina of being like, Okay, what do I need to do I need to do this, this is something that I need to focus on. How, how do you think that sort of manifested itself into the day to day of needing to control things? And then were there any moments within that, that helped you reach new levels of acceptance, and maybe took you out of denial?

Lauren Fenton  32:35  

Yeah, I've talked about it before, but I did, I was just militant about trying to do everything. So you asked about knowing from early on, I guess, we didn't know what the future held, no one does. But I was gonna make damn sure that I did everything I could to make possibilities for Bea, and the opportunities for Bea as great as I could. And I would flip probably from doing every therapy and reading about every therapy that I could to then like moments of just, I guess, part, partly the denial, but wanting to go out and let my hair down and have time away from it. So you know, jumping from one extreme to the other, I remember being pregnant with Bea, and we went on holiday. And I was with Olivia, obviously, and she was little and I remember feeling a bit guilty because I was about to have another baby and but she still needs me, she's so little. We were by a swimming pool and looked at the swimming pool. And I just had this image of oh, no I'm going to have these two wonderful daughters. And I'm gonna be jumping from the side of that pool into the water with one daughter in each hand. And I had this thing in my head and I remember like kicking back with music in my ears, I think I was listening to Lana Del Rey or something and it was like all very chilled, and visualising this. Then when you get this news that given the case studies, she may not walk, she may not do this, she may not do that this is going to be different this time around. I remember rethinking that image. And you know, I have to say Bea is seven now, I'm still not in a position that I can hold both kids and jump into the swimming pool with them. But we will do that on you know, our way at some stage in the future. We'll we'll figure it out.  But yeah, it's hard, isn't it? Because you've got to let go of that. And I think it's, it's there were things that helped but for me it kind of crept. That acceptance kind of crept in over time, because I was learning to let go of some shit learning not to control everything because you just physically can't. Listening to Patrick try has helped me to let go of shit and tell me that like it was really important that it also look after myself. And as you get to know your child, because they're not a syndrome, they are who they are. Both my daughters are wonderful human beings, I would say, because I'm massively biased. And you know, they'll Yeah, yeah, they'll be, there'll be and like, in the meantime, the most important thing is just pour so much love into them and, you know, stop agonising over what the future can bring. Because yeah, I think all of that stuff we will, we'll know that in theory, but I think over time, you start to really live that and think that. But it's gradual. And I don't think it's finished. It's not like you wake up and go, Oh, everything's great. Now, this is our life. And that stays with you. They're always setbacks and moments. And I think, and I challenge myself, you know, like, sometimes when we try to do something to help Bea and then I'm like thinking, Oh, am I doing this really to help her to be more independent? Or am I trying to mould her or to make my life easier? And maybe that's like Patrick would say, Well, maybe that's okay. Maybe it's okay to have your life easier as well.

Genevieve Porritt  36:20  

So you have to question question those decisions.

Lauren Fenton  36:23  

Yeah. And yeah, and maybe it's not so much whether you're helping it to be independent, but it's like, is it you doing it in the right way at the right time? You know, maybe she's not ready yet. for that. It's really hard.

Rina Teslica  36:36  

I have the thing where what I've noticed recently, which is makes me kind of think about what I'm doing is like when they start to do something new. And then you're like, oh, and then you want them to do loads of other things at the same time. Yeah. And it's like the pressure you're giving them so like with Lua she's, she's only started eating in the last year. So Lua's still nonverbal, but she communicates with her hands and Makaton. And once she started to eat, which was like I've worked for six years to try and get her to eat orally. Once she started doing that, I was like, right, now you're gonna stop talking. And we're going to do this. And we're going to do that. And it's like, stop, just enjoy what she's achieved. And let her decide. Kind of Arbs has always been kind of a voice in my head because he was accepting of her like immediately. It was like an instant. Okay, she's born with additional needs and we didn't get a diagnosis for six months. Having said that, when the doctors once she was born, and they took her to the ward, like, look at her and do the head to toe. Yeah. And obviously, they checked her heart immediately. And the cardiologists were standing there. And kind of we were expecting something to do with the heart, because that's kind of what we had been told would be the problem. He looked at her and he just went, I think she's got Noonan Syndrome.

Lauren Fenton  38:01  

Wow, very similar. 

Rina Teslica  38:02  

Like, yeah, immediately, and I was like, a) syndrome, like we've never considered a syndrome, like syndrome was not in our minds. It was only a heart condition, probably a hole in the heart or something else and surgery, rather than, yeah, so when he said syndrome, like my, my feet were just gone. Like, I just wanted to faint. It took so long. And I because it took six months for the diagnosis. I was constantly now she doesn't have it. If she had it, they would have told us by now. Come on. It's fine. She doesn't have anything. 

Lauren Fenton  38:33  

Right. So you were in denial before the news. 

Rina Teslica  38:36  

Yeah, totally in denial. I started to ask because it was like six months I was I need confirmation that she doesn't have it and like, come on enough. You know, and I started to ask the consultants, you know, about Noonan syndrome and syndromes in general. And I three consultants were like, I don't know whether they said this to make me feel better or whatever. Even the geneticists two consultants and a geneticist, all said to me, if I could pick a syndrome, I would pick Noonan syndrome out of them all. And I was like, okay, so must be that bad, you know, and they were like, it's, you know, the

Lauren Fenton  39:10  

Strange thing to say. 

Rina Teslica  39:11  

They were like, they tend to have normal lives, and they can, you know, doesn't affect them that much. Lalalala, when we did get the diagnosis, she has the rarest form of Noonan syndrome, which means that they have a lot of additional needs, and is not as... And Noonan syndrome is kind of like autism has massive spectrum. So although they said that to help me, it really did not at all, because when I did get diagnosed, it was like, What the F**k man?

Lauren Fenton  39:39  

Yeah, that's a bit like them saying, well, it's nothing to me. Like, oh, actually it is.

Rina Teslica  39:45  

It's a big deal. 

Lauren Fenton  39:46  

Yeah, that's mad isn't it. That's hard.

Rina Teslica  39:49  

But like, I think I'm grateful that the word Noonan syndrome was floated around so early so that it wasn't so much of a shock when it was confirmed. Yeah. No, although in that moment, like for eight, we're gonna say, seven and a half months of her, of me being pregnant with her, syndrome was not a thing. Like it wasn't even, it was just like, Oh, I'm pregnant, but my kid is gonna have surgery on her heart, and it's all gonna be fine. And that's it, we'll go home. And then that first who was a day on and like, oh, yeah, Noonan syndrome. 

Genevieve Porritt  40:24  

And that was like to you the worst? 

Rina Teslica  40:28  

The worst thing you could say. 

Genevieve Porritt  40:29  

But then it took some time for you to understand that that may not in fact, be the worst. So by the time you got the actual diagnosis were you in in more of a place to be able to accept it? 

Rina Teslica  40:41  

I was relieved from both I was relieved. And because it because it took so long, because her form was so rare. There was at that time, only 11 people in the world with the crass form of Noonan syndrome. So there was hardly any we didn't get any information on what Noonan syndrome, how the crass form of Noonan syndrome affects all we had was Noonan syndrome. And you it's the PTTP form, which is the most general version of Noonan syndrome, where they tend to like cognitively be relatively normal. They go to mainstream schools, and they tend to have feeding issues but you know, relatively normal lives. So, that's kind of what we were imagining. And because Lua's facially she doesn't present with Noonan syndrome, which is why they were so confused, right? So they were like, she's got some symptoms, but not all. And facially she doesn't have Noonan syndrome, but then her physicalities were so they were very confused. Like, I'm really happy. I was like, flying out that office, the room. Like, she's got Noonan syndrome, yes, yes. It's a great, yes. Easy syndrome, they would all have it if they could.

Lauren Fenton  42:02  

I think language as well, like you talked about syndrome, I think that can have a mass I remember. Like, I remember, friends and family using the term special needs to describe Bea or describe her needs when she was a baby still and almost recoiling them using that term. Because I hadn't used that term yet. And I used to refer to be as having challenges, she has a few challenges. I mean, f**ksakes, we all have challenges she had needs. You know, and then but then you you know, then you find your way with what language you're going to use. And I'm still not comfortable with some of the language that I use now. I just have to use it because, or it's easier to use, because that's what therapy, school, other people around me are using, and it fits and it makes sense to people. But yeah, I remember having a very visceral reaction to other people defining my child as something which was clearly tied up in how I was in denial and I was I'd been socialised to think certain things.

Genevieve Porritt  43:12  

Things about those words. Yeah, absolutely. That is really interesting how language can affect and how your development and understanding of language around disability then changes. Yeah, how you talk about your child how you advocate for them, and how maybe how you talk on their behalf as well

Lauren Fenton  43:29  

completely? I think yeah, I think it took a long time before I actually would refer to Bea as being disabled, I didn't use that term at all,

Rina Teslica  43:39  

I still hate that word. 

Genevieve Porritt  43:41  

But it's it's interesting when you when you start to with with Dylan and you start to have to access things or accessibility but access disabled toilets or access disabled parking, you have to use the language to be able to communicate communicate with other people what his needs are, therefore you don't want to shy away from using it and you have to accept this is a word that society uses for us to be able to access the things he needs to access so using it is going to do him give him more power in the long run than not but it took me a long time to not think about it in that way. Yeah that physically recalling at having to say something because you have been conditioned to believe that this is not not something that is accepted in society.

Lauren Fenton  44:36  

Yeah. And it did just also like the denial of it almost feeling like a definition that you didn't want at that point in time. And all the all that comes with that. Yeah, completely. I would definitely we'll do a full episode on language in a future series because I think there's a lot to say and we probably need to learn as much as anything Rina, don't we.

Rina Teslica  45:00  

Definitely 

Genevieve Porritt  45:00  

This maybe brings us on to talking about whether there were any external influences or experiences, which contributed to a new level of acceptance for either of you. I know with me, around that same time that I was thinking more about language and the language I used, I suppose it probably around the same time that Dylan started to talk more, I would really start to become interested in the language I was using, and I would be on Instagram following disabled adults and read. And it really changed how I spoke around him how I spoke on behalf of him, but also how we did things like physiotherapy, because I wanted him to fit into the mould her normal. Yeah, exactly. reading some of those books really made me just completely take my foot off the accelerator, it was actually in lockdown. So it was very magnified and intense what we were doing, it was just me and him. And I just took my foot off, and we just chilled and it really helped us both really helped us both mentally, to just flow a bit more in life and become more accepting. So wondered if there was anything in

Lauren Fenton  46:22  

I think the pandemic like I would say I was I got to a level of acceptance before the pandemic. And that was largely through books that I had read. I've mentioned 'Far from the Tree' before on the podcast that really shook me up as a kind of different way of looking at identity and disability. But then, the pandemic really focused the mind on what was important, that perspective of family and keeping people safe. And that being kind of all you could do. And the most important thing, I think that really stepped up a level of acceptance for me that in connecting with other people, so when Bea was really quite little still I was set up on a blind date, by her physio, not with a man or or lady for sexual reasons. But my physio asked me if I would like to be put in touch with someone who she thought I might get along with. And she did the same to my friend, Sharon. And then I went, I got her number, she got my number. We couldn't know much about each other because of patient confidentiality. We were just kind of matched. And then I went knocking on her door after we arranged to meet and yeah, we've been friends ever since. So I think just having making those early connections with some people who've got similar stories or not that similar but you know, they're they're experiencing versions that that overlap.

Rina Teslica  48:03  

But I have a very similar one actually, I completely forgot about this. When when we were in hospital, and they take you to that dreaded room and they tell you well, they told us all she needs a tracheostomy, which is like, the worst news in the world. Because it's all this extra work and you've got a thing in your throat whatever, obviously had a breakdown in that room in front of like six doctors and was very upsetting. And the on wards  they have like a clinical lead. And she kind of pulled me aside. She's like, do you want to meet another mum, who was in the same position as you? Whose son was born here had a tracheostomy there in the community, whatever. And I was like, No, I don't want to know. She did it anyway. Got this woman to come in with her son and her older daughter. She's, she waited, they didn't even tell me. She was waiting in the room for me. And Ashleigh was like she's in there. If you want to meet her, you don't have to, but she's here for you if you want to. And I was like, it's amazing. Yeah. And I was like, Okay, fine. f**k it. Like this is a reality. Lua will need this tracheostomy. So I may as well go and meet this mum. And her son was the cutest boy ever. Like I fell in love with him. And she was just talking about how, yes, he's got a trachy, but they go out. They live a normal life like it's fine. And he was showing me he was three and he was showing me like little tricks. I was putting his finger in his trachy to like, scream. And it was just so cute. And I left like walking on air. I was like, it is not the end of the world. Like, it's fine. Why am I being so dramatic? Yes it's a lot of work and all these things are gonna happen. But look how happy this mom is. Look how happy her son was. And then I got to repay that. So once we left hospital, about a year on Ashleigh got in contact with me it was like we have a mum with a daughter. Who has just had a tracheostomy and the mum is just really struggling. Can you come in please? I just want her to see you and Lua. And I came in and I obviously went into Ashleigh's office to meet some of the nurses that we had spent loads of with and the lady's mother was outside. And I walk out and obviously Lua has she always wears a bib because she's so dribly. She likes sticks stuff in her mouth. So I don't do it to cover the tracheostomy. I do it to keep it dry. Yeah, so she walked down. She was like, oh my god, this is Rina look. Her daughter's got a tracheostomy in the lady's mum was like, what? Where, and the mum was struggling with the whole concept of trachy. And it being so in your face. And just so medical, which I also struggled in the beginning, I hated it. Like, it's the first thing that you notice in a child and I didn't like that. 

Genevieve Porritt  50:47  

You always call them appendages don't you?

Rina Teslica  50:49  

Yeah. Yeah, the bits. So yeah, so she's like, where is it? How are you? Oh, my God. Oh. And Ashleigh was like you've really helped her to under to see that it's fine and normal, you know. And the mum met Lua and she just understood, she cried. And but she saw that it's not a big deal. And I just felt like, it was just so nice to pay back because I was there. Yeah, where she was two years previously 

Genevieve Porritt  51:15  

Is Ashleigh a nurse? 

Rina Teslica  51:17  

She's like a clinical leader, she was just the best.

Lauren Fenton  51:20  

It's interesting what you say about as well then, like, the kind of how it looks to other people. Because I think that's a level of kind of acceptance or getting over it. Get over yourself, get over it. Who cares what other people think that we will have to sort of experience not so much other people's acceptance, but not caring what other people are think. Yeah, and actually that can catch you sometimes I think it comes back to kind of having to challenge yourself, or I certainly feel I have to challenge myself sometimes because we had this thing not that long ago, where eyes started rolling back in her head a lot. And she was under lots of neuro investigations for whether she was having seizures. And I was really, really like trying to get to the bottom of it from a neuro perspective. And I think I knew that it was probably just a tic and just a kind of habitual thing that she was doing. But I was to the ends of the earth trying to explore what it meant, is she having a seizure? What's going on? Why neurology neurologically, she's doing this? And I think that was a bit if I'm really honest, I think that was a bit because it it looked so strange when she did it. And it was really noticeably strange. And she still does it, she doesn't do it quite as much. She was doing it a lot more pronounced in that period. And that was me like quite far on, you know, into what I thought was a level of acceptance. But suddenly, I'm like, caring about whether my kid does something that looks strange. And it's you just, it's just ridiculous, and not fair and hard and a waste of energy to be even thinking about it like that.

Genevieve Porritt  52:57  

I suppose acceptance doesn't mean everything's okay. And you're happy all the time. You just kind of take the days as they come. And sometimes they're shit, and sometimes they're okay. You just keep going and work through it. I felt the other day. I was so tired and so stressed, which I think really counts towards it. And I felt really exposed just walking in the park was Dylan. It felt like every single person was looking at his wheelchair and you could kind of see their thought process of them. Like the the oh, there's a kid in a wheelchair. Oh, pity. Oh, now he's gone again, and just annoying, and it just made you want to be at home. But then some days are hard still. Do you have that still? 

Rina Teslica  53:46  

I mean, I've had one. I mean, recently, maybe like six months ago, we were in hospital with Lua doing a checkup about the tracheostomy. And we kind of had pinned our hopes that this was it, that we were gonna get some good news and maybe a date to have it removed. And we didn't. She's not ready. They needed to do some extra things and they kind of were like, removing the trachy's on the backburner. And because she made so much progress, we were like, it's bound to happen. Like it's gonna happen. They're gonna take they're gonna say like, beginning of summer and we're gonna like remove it or trial it lalala. So when they gave us the bad news, it was like, somebody had cut my feet. And I was like, just on the floor. And I was like, f**k, because we really didn't expect it. I didn't expect to have the bad news at all. Like wasn't even in my thought process. So then I like you kind of hold it together when you're with the doctors even though I was quite bitchy. And I was like, what, what where is this coming from? And I was very snappy. And Arbs was like, holding me back, calm down, you know? And then I just walked away and I went into the gosh I like the cafeteria. And I just walked in. And there was like all these kids who all had lots of different issues, but none of them had, as I say, the appendages like Lua has, and I just couldn't be there. I was like, I hate you all. I could not stand seeing any child in that moment, I just decided to leave the hospital, go and grab a coffee somewhere else where I didn't see any children.

Lauren Fenton  55:24  

That's kind of a protection and a smart move in a way though like. I think it would be much worse if you were seething but stayed.

Rina Teslica  55:33  

But I think it's I got over it very quickly, like I walked in, and then that hit that hit, you know, like, a cold or like a knock. And then I was like, right? What are my choices here? I could stay and yes, seethe and just be annoying, or just move, just get out of there and take some time. And I think had this happened a couple years ago, I would have just I think I would have cried, I would have cried, gone into a deep dark hole and it would have just been a spiral of shit. So I've learnt with acceptance of Lua and higher bits and all the diagnoses and everything else. That yes, you get some days that are great, and some days are not. So in that time, she got rid of the ventilation that she was on, so it was a positive. And so I've learned to kind of take the positives with the negatives and just keep on truckin. 

Genevieve Porritt  56:27  

Yeah, I think it's definitely that, isn't it? It's the learning of acceptance. That helps you get through the days easier, even if they're shit ones, even if they're good ones. 

Rina Teslica  56:40  

Yeah. And it's giving yourself time to like, allow yourself to feel that. And I remember, like I sent a message to you guys, like, I just need to get it out. I couldn't say it to Arbs because I think because we were so in a shit place. I wasn't going to turn him over. Like I hate kids. And so I sent you guys a message like, I just need to write it, get out of my system and let it go. And I think it's important to accept your feelings, not bury them.

Lauren Fenton  57:10  

Be honest about your feelings in that moment.

Genevieve Porritt  57:13  

Yeah, and actually writing, i find writing them down so therapeutic. Literally just gets it all out. It's all out in the open, whether that's journaling or in a safe text message space. I find that so helpful, and it can pass really quickly. Yeah, in that way, feeling those feelings? And then Okay, it's done. What's next?

Lauren Fenton  57:34  

Yeah, you can dispel it. It's perspective, isn't it? I think, you know, as the acceptance comes, being a parent to kids with disability, you get like this gift, hate using terms like that. But you get this gift around perspective and what really matters. And as you are more accepting of and in a more kind of acceptance place. That perspective grows as well, I feel like you just like you say you acknowledge that there are going to be bad days, or there are going to be things that you don't know that come and hit you and surprise you. But then you kind of know how to deal with that better. It's perspective that you get, it's understanding that you get you get more patient with yourself and with the child. There's so many things that you learn and get better at as a person as a consequence.

Genevieve Porritt  58:28  

Is there anything either of you think that is actually, going from that learning how acceptance has helped you deal with the day to day and being kinder to yourselves... Is there anything that has actually changed in your lives that you can? Something tangible? Yeah, that's tangible from that

Lauren Fenton  58:48  

I am being more aware that I can't control everything. So my To Do Lists was always like a bit of an issue for me. Like, I have to do lists, and I have sub to do lists, and I have to do lists for different parts of the day. And it's, it gets slightly obsessive. And I've been Yeah, much better at kind of Bea isn't a to do list for f**ksakes. She is a child that needs love and support. So I used to have a kind of not a Bea to do list, but a list of things that you know, therapies, I was going to explore hospitals that I need to chase or, you know, things I was going to help her to learn. And I'm not saying I don't have some of those things still in terms of, you know, obviously there are hospital chasing that you need to do, but I don't I don't kind of obsess about it or list it out. Yeah. It's like being kinder to yourself, like you say about what actually matters and not not trying to kind of micromanage and control because it's pointless. Yeah,

Rina Teslica  59:55  

that's good one. Definitely. I think for me If we had a discussion earlier we were talking about one of the biggest things with acceptance is your own ideas of what you want your child to achieve or do. And actually, it's not up to you and your beliefs it's up to them and when they decide that they're ready to do x y and z. And I think for such a long time, I was so adamant in wanting Lua to get rid of the trachy or walk or whatever that it. It mod my acceptance of her as a child as an individual, because I wanted her to achieve all these things. But actually, I had to get to a point where I accepted her for who she was, yeah, who she is what her life pattern is, without me interfering in that. Yeah. And I think once I got to that, that was the biggest kind of 'ding' moment for me was like, I see you and I'm not going to try. I think once she started to walk when she walked I think for me, that was the turning point where I was like, Okay, you are going to do all the things that you're meant to do without me piling on the pressure. Yeah. And I think because she walked so late (she was four and a bit) and it had been like, this big thing of like, Why isn't she walking, I want her to walk. I want her to be independent. Push, push, push, push, push, pressure, pressure, pressure, and she was having none of it until she decided, yeah, okay, fine. I'm ready. I'm gonna do it. And it was so like,

Genevieve Porritt  1:01:37  

It came from her?

Rina Teslica  1:01:40  

From her yeah. And it was so out of the blue, it was so like, 

Genevieve Porritt  1:01:44  

But without that pressure without that, and also the setup for failure. Because if you're pushing someone who is beyond their limitations at that point, you just feel like you're failing as a mum, and they feel like they are and it gets to weigh too much 

Rina Teslica  1:02:00  

Feeding was like that, that the eating oh my god, it was just the worst time of my life. And because I'd studied nutrition and love food, and it's such a big part of life for me, for her not to be able to eat was like, I had it in my head, like, you are going to eat, I'm going to make you eat. And that was kind of how I went into it. So every therapy that we had every I would cry I would it was just the worst timing like it just and she hated it. She could feel my deep desire for her to eat. But also she wasn't anywhere near ready. So it was just like, a fight between her and I. And then obviously, it's all the blame, like what am I doing wrong? Why is she not doing this and Lalalala. I just pulled the foot off the pedal for like, a year and a half. I was like, f**k this. She don't want to eat, she ain't gonna eat. I just stopped completely. And then just something happened. She just decided actually, now is the time. It happened so randomly, like, of course, I was still trying give her stuff to eat whatever 

Genevieve Porritt  1:02:00  

You still offer it right? You just take just no pressure the pressure off? Yes, exactly the same happened with and I just assumed, you know, obviously they are fed via a tube. And they're fed during that time. But yeah, take the pressure off. And the anxiety within me, his anxiety was so much better. And it's that same thing that acceptance of there are other ways to eat. You can be tube fed, he's still getting the nutrition, they're still getting the nutrition that they need. They're still gaining weight, they are still getting everything they need, except that that's the way they're going to do it for the moment. And whatever happens happen.

Lauren Fenton  1:03:40  

Yeah, it's letting go of those like targets and goals that you set for your child that are based on a set of assumptions that you hold about what their future should be or what their life should be, and just not trying to impose all of that conformity on them. But actually, let them be who they are. And I think yeah, it's hard, though. It's hard. And I'm not gonna pretend there aren't days where I wish that Bea could communicate better with me all the time that I catch myself thinking about it, but you also appreciating the things that they can do and the people that they are because, you know, Lua's aass and determination. And I just love the fact that she decides when she's going to do that just sounds like a completely Lua. Yeah. And like when she does want to communicate at the moment, Bea's got a really silly sense of humour. If she breaks wind, I'll like say something. I mean, it's very juvenile. She has a child, and she will blame everybody else, like even people that aren't there. And then she'll chuckle to yourself Becasue she finds it so funny.

Genevieve Porritt  1:04:55  

Flatulence is funny with young kids. 

Lauren Fenton 1:04:58

Let's be honest, it's kinda fun, funny with adults too. 

Rina Teslica  1:05:02  

Like we don't blame our partners when we fart! Come on, let's be real.

Lauren Fenton  1:05:06  

Yeah, so just focus on the cans, not the can'ts. Celebrate. Don't mourn.

Genevieve Porritt  1:05:13  

Don't sweat the small stuff.

Lauren Fenton  1:05:15  

Yeah, that one. Having good days and bad days is something you have to be conscious of.

Rina Teslica  1:05:19  

It's inevitable when you have a child with special needs. I think it's just like it's never going to be plain sailing. It's always going to you're always going to look to the to the next bump, but I think you just get better at riding the ride the wave ride the wave Yeah, yeah. 

Genevieve Porritt  1:05:35  

Well, thank you both so much for coming on my podcast. Sorry, that slipped out.

Lauren Fenton  1:05:41  

Well thank you for offering your services

Rina Teslica  1:05:46  

To host our pod? Our our podcast? 

Genevieve Porritt  1:05:51  

It's been really fun. And I think yeah, great.

Lauren Fenton  1:05:54  

Not so scary. No, no,

Rina Teslica  1:05:56  

No, don't mind being on this side of the mic. May consider doing again.

Lauren Fenton  1:06:00  

I hope that that's helped listeners to get a bit more of a picture of who we are Rina and my story as well. Yeah. Or our separate stories. 

Rina Teslica  1:06:10  

Our story together!

Lauren Fenton  1:06:11  

That's another episode. Anyway,

Genevieve Porritt  1:06:15  

yeah. Brilliant. I think it's time to end with my f**king normal. Oh, yeah. And we hadn't introduced my f**king normal when it was my episode at the beginning of the podcast. That's okay. Um, so I'll start us off. So my f**king normal is my child does not eat orally, but it's so f**king passionate about food has taken to feeding me my dinner every night. 

Rina Teslica  1:06:41  

Love it. Oh yum!

Genevieve Porritt  1:06:47  

And what's yours?

Lauren Fenton  1:06:49  

Well, my f**king normal is being late, because I've had to sit on the pavement or anywhere in the street and wait for my daughter to finish the book that she's reading.

Rina Teslica  1:07:05  

Now we know why you're always late. Yeah, my f**king normal is getting over my social dislike of talking to strangers because my daughter's such a social butterfly that she grabs on to any available hand and gives it a kiss.

Genevieve Porritt  1:07:27  

Oh, they're all adorable. I love it.

Rina Teslica  1:07:30  

I love it. Thank you so much Gen. It's been great

Genevieve Porritt  1:07:34  

Shall we do the bye. Okay, bye. All right. 

Lauren Fenton  1:07:38  

Thank you so much for listening to the f**king normal podcast. We love making this podcast. Yes, we do. We are part of a much bigger team, almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences.

Rina Teslica  1:07:59  

So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at f**king normal podcast.com That's f k ing normal podcast.com you can join us on Facebook and on Instagram at f**king normal underscore podcast. That's f k ing normal underscore podcast. You can get all the links and more information in the show notes below.

Lauren Fenton  1:08:23  

So thanks so much for listening all the way to the end. We'll see you next time.

Rina Teslica  1:08:28  

Byeeee "kissing noise"

Episode 6: Couple Relationships

~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Lauren 00:18

This is the f**king normal podcast, the cheers, tears and Friday night beers of parenting disabled children.

Rina 00:24

I'm Rina,

Lauren 00:25

and I'm Lauren.

Rina 00:27

And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories, and chat about the things that we've learned and are still learning.

Lauren 00:41

Prepare to sometimes laugh, sometimes cry, but hopefully leave with a shot of optimism in your arm. And don't forget, we are talking from a parent's perspective, we would never presume to talk on behalf of a disabled child or adult. So expect bad language, and quite frankly, some brutal honesty.

Rina 01:01

Because really, what the f**k is normal anyway? 

Lauren 1:16 

Welcome back to another episode of the f**king normal podcast. We're your hosts

Rina 1:21 

I'm Rina.

Lauren 1:22 

And I'm Lauren. And today we're super excited for this episode and our guests. We have a special guest, our first ever SEN dad on the podcast. Oooooo!

So today's episode is another take on relationships when you have a child with a disability. Like we said in episode three, it's such a broad topic. So we plan to have regular episodes with different perspectives and stories all around how relationships can be impacted by having disabled children. Today, we again talk about partner relationships. And we'll be talking to a couple.

Rina 2:00 

So without further ado, let us introduce you to our lovely guests, Clare and George are the super cool couple you secretly wish you and your hubby looked like. They are parents to beautiful Ada who's eight, who is autistic and long haired cool dude Ivo who's thought Clare works in music as a music manager and George is a digital marketing manager. Welcome to the pod guys.

Lauren 2:23 

Welcome.

George 2:24 

Hello!

Clare 2:26 

 Hi

Rina 2:26 

So good to have you here.

George 2:27 

Thanks for having us.

Rina 2:28 

How are you both?

George 2:29 

Very good thanks

Rina 2:31 

Guys, can you tell us a little bit about yourself? So how you met when you had Ada? When you had Ivo and kind of your history?

Clare 2:40 

Yeah. Okay, so we met in 2013. I, we both used to live in Dalston. And I used to live in this great big warehouse with 11 people that had no windows and no heating. And no rules, really. It was, it was quite wild. And George lived..

George 3:06 

.. in a flat with one other person and possibly eight mice.

Lauren 3:13 

Did you have rules?

George 3:16 

Yeah, the mice had rules. They ruled us.

Clare 3:21 

And that was actually funny enough, it was on the same road. So we live both lived in Dalston on Kings Road, and it was on Kingsland Road at the infamous club. The Alibi. I met George properly for the first time. It was a really intense night.

George 3:40 

Yeah, but yeah, it was a lot of whiskey.

Clare 3:44 

Loads of snogging.

Lauren 3:47 

I mean, you don't have to give us all the details guys!

Clare 3:49 

Yeah George!

Rina 3:53 

like it was love at first sight?

George 3:54 

I just remember maybe you spat whiskey my face or something like that?

Clare 3:59 

Oh, yeah. I think like you thought was cool. And I probably thought it was like really punk.

George 4:02 

Yeah. Anyway, we can cut that bit out

Clare 4:07 

Definitely keep that bit. Definitely. So yeah, that night, we like made out loads. And about a week later. No, no, I went outside for a cig. And you disappeared. I think I like messaged you the next day, like where did you go and you're like, I woke up with a piece of pizza on my face.

Lauren 4:28 

So it was really romantic first night. It was so romantic.

Clare 4:32 

And then I went to Jamaica, like a couple of days later, I went to New York and to Jamaica with my friend Molly. And it was really fun.

Rina 4:38 

And were you thinking about George that whole time?

Clare 4:41 

Yeah. Like, I was definitely like, That guy was really cute. But I was also like, you know, in Jamaica and with my friends and just..

Rina 4:51 

 living your best life.

Clare 4:51 

Yeah, you know, I definitely thought that he was cute. But I also thought that because he like vanished that like, you know, he was just another one of those guys that you make out with. Anyway, go to Jamaica, come back. And the night I come.. The day after I came back from Jamaica, I was super jet lagged. And I couldn't sleep. And I knew that there was something going on at the Alibi. And walk down there and it was actually shut. And you were outside. And I was with my flatmates. And you would like come back to my house for a party, everybody. And then like we like hooked up.

George 5:29 

Yeah, yeah. Yeah. And that was, that was possibly the time that Ada was created.

Clare 5:37 

Yeah

Lauren 5:39 

bombshell guys.

Clare 5:41 

So it was pretty crazy. Because like five weeks later,five weeks later, I was like, Hey, what's going on with us? And George was like, I don't want to put a label on anything. And then he's like, Oh, actually, do you wanna be my girlfriend?

George 5:55 

And I was like, Okay, and then the next day, I actually was going to the doctor to actually talk about coming off like my, like, anti depressant. So say that that can be another episode. But um, and she needed to run some tests on me and actually, she was like you're pregnant. And I called George at his office, which is this big law firm in the city. And he wasn't you must have been  like, why are you phoning me ? And I was like, Oh, I'm pregnant, and you're like, shit. What do you want to do? And I was like, I dunno, come over to my house and have a chat

Yeah. W So yeah, I guess Yeah, I was at work. And I think I was buying a basketball at lunchtime, I dont know why... with one of my colleagues, and then yeah, got the call.

Rina 6:47 

And you dropped the ball.

George 6:58 

I dropped the ball..Yeah, then yeah, you called. And I guess it was just, that was kind of obviously shocked. But also not shocked at the same time

Clare 7:01 

I mean, what did we think was going to happen. We've been like, you know, really, like fallen in love super quickly, like for like, almost, like, practically moved in together. Right away. We were staying with each other every single night. You know, like, 

Lauren 7:16 

So fast forward.. Wow. So it was love at first sight, pretty much. And Ada came into existence.

Clare 7:26 

Yeah. So what was like really intense was because as I was explaining, before I lived in this warehouse with like, it was freezing cold there were like, Absolutely. There was no way that I can have a baby there. And there was no way I was going to like, the mice flat down the road. Like I wouldn't even stay there. Because I was like, I'm scared of mice. So we moved in together. Like we moved in together, like right away, didn't we? We decided to have Ada and we moved in together right away. So we've been dating for I think it was

George 8:00 

about three months.

Clare 8:01 

Three months. Yeah, it was just after the 12 week scan. So we moved in together, and we moved to Camden, which we actually we've been in Camden ever since Haven't we like in different different spots

George 8:15 

Yeah different parts of it? But yeah, I moved in, like the whole IKEA trip with Claire being pretty pregnant, and the whole thing was just massively stressful barely knowing each other and just being like, now we're picking furniture. Like, what do we like?And I was like, Yeah, that's cool. Yeah.

Lauren 8:39 

So it was all quite quick.

George 8:42 

Yeah, very fast.

Clare 8:43 

Yeah. And in a way, like, it's kind of funny, because like, when I reflect on, like, the last weekend together, you know, it'd be 10 years next year. Like, when I reflect on like, the last decade, the hardest thing of all of it, actually, was moving in together that early. It wasn't having a baby and not knowing what to do with it. Because you know, you have a baby, and they just give it to you in the hospital. And they're like, keep this thing alive like that's it. Like, it wasn't that... it wasn't Ada. Like it wasn't us thinking that something was different with Ada It wasn't even a diagnosis. It was moving in together that quickly and just getting happen to get to know each other are quite alike. Yeah. You know, there's a lot of trust from both both sides to like, you know, all of a sudden just be thrown into. Yeah, I imagine a complete lifestyle change. Especially for you.

George 9:42 

Yeah. Because, uh, you know, see works and stuff, but I liked go out a lot. Most days in the week, weekdays and stuff. So from going from that to then just like, Okay, well, we'll just really focus and not do that anymore. I'm just like, yeah, he was It was weird at the time because I was I was going through that kind of adolescence still which a lot of people were back then. In their sort of mid 20s that there's still this era of adolescence in East London.

Clare 10:10 

26, you know what I mean, yeah.

George 10:13 

Yeah, it seems old when you think back but you're actually still quite young and you haven't figured it out yet. But then the 27 point came and yeah, I guess the point of having Ada it's like a moment of like just wow, okay, like this is different now. You got to just like knuckle down and work at this and do what you can I guess.

Clare 10:38 

Yeah, like we probably probably have, like now that like Ada's eight and Ivo's 4 thought like, we probably have more freedom now than we ever did, actually.

George 10:50 

Yeah. I think in the beginning, you'd be quite harsh on yourself in terms of your own time and going out. So like for the first couple of years. I don't think we went out at all really?

Clare 11:00 

No, we didn't even like really go on dates like just Oh, we'd go to Marks and Spencer and get the 10 pounds. Do you remember?

Lauren 11:08 

Classic! Yeah stay at home meal. It feels such a treat though.

George 11:16 

Because you feel like you owe it to your child just to be, you know, be the best parent and not go out and like you feel like, you know, you do lose a bit yourself but then that, you know, you learn to give a bit of yourself back over the years and stuff.

Clare 11:30 

Thinking about it now , right? I had like full blown postnatal depression, and I didn't realise it, and George didn't realise that. And I did get I did get, like help. Remember, I was going to take the Anna Freud term, like having this like, sort of quite interesting therapy, but like,you know, we didn't have any friends that have babies, like it was just us. Like, we were the first not only the first, we were the anomaly like, you know, recently, my friend, Yasmin, who's sadly not with us anymore. She introduced me to her friends as like, oh, you know, this is CJC. Like my friends, like my old friends call me CJC, the CJC she's like, she's a legend. She got knocked up in the bogs at the Alibi.

Lauren 12:23 

Good to know the tagline.

Clare 12:25 

And by the way that's not true!

Definitely didn't. So where were we?

Rina 12:34 

Let's go back to kind of Ada and finding out about the autistic kind of diagnosis and whether you had any idea? Or did you have Ada and kind of think this is normal for a while, and other people were picking up? Or were you being?

Lauren 12:52 

Especially if you didn't have other friends that had children at the time.

Rina 12:57 

Or did you know? Did you feel it deep in your soul that there was something kind of..

Clare 13:00 

Well, this is why things are really different between me and George, right? Because from when Ada was six weeks old, I started going to parent and baby classes. And, you know, I met an incredible some of the some of the people that I met at that point as some of my best friends now. But I could compare... And every parent does it... you compare your kids to other kids. And like, I noticed really quickly that like, Ada wasn't doing things that other babies were doing. Like she wasn't lifting her head. She would wasn't rolling, and then bigger things started happening. Like she wouldn't, you know, she wasn't really like an he wouldn't really stare on my face, but maybe that's okay. You know, maybe that was a thing. But she, then she wasn't sitting and then she was also like, my friends, they were saying, she was like a little slug. She's so cute!. Like, she's so chill. Ada is so chill. Like, the other kids were like, climbing up the walls, and Ada was so chill. And I was actually thinking like, f**k, something's wrong, you know. But for George, that had to have been a bit different.

George 14:17 

Yeah. Because I still didn't feel the experience of, sort of, yeah, it's my first experience of having a child and not comparing to other kids or just believing that thing of like, don't compare. Everything's fine. So I always kind of had that mentality of like, Oh, it's just, you know, just what Ada's like. This is, this is what it is, and that there's no I didn't recognise the, the things but you know, the kind of, sort of start to get to know stuff when things you know, when she got older. And, you know, the points where like we're on holiday. Think she was about four months old. And we're staying in a hotel, and she fell out of her buggy and sparked her head. So we were like "aaah"

Clare 15:06 

we need to go to A&E, like, oh my god,

George 15:09 

we went to the hospital, no one spoke any English, so we're doing the whole consultation in Google Translate, and then the doctors were like, flat flag, the whole thing of that her being... They're like, she's a bit floppy. That was kind of the translation. At that point. I dont think we..

Clare 15:31 

…but also you weren't hanging out with anyone that had kids. You know, like, and I think like that that was definitely something quite different for me and you. At least I was like around, because I wasn't working. You know, it was really long maternity leave. So it was just hanging out me. I was just hanging out on the H eath all the time that anyone that had a baby that would hang out me andyou will close it here and

Lauren 16:01 

You were closer to the experience of like parents and their kids and having lots of comparisons and other people to look at around you and see how maybe things were progressing slightly differently with Ada. It also strikes me that  maybe it's a bit your personalities different as well.

Clare 16:20 

We're super different.

Lauren 16:21 

Yeah, it's a bit same Patrick and I like I was taking on more of that full time carer role when Bea was born. And so I would go to the classes and notice the differences and he wasn't really as tuned into it. And then, but then also he's very chilled, like, a bit like you, George. Maybe not as chilled as you George, but he's like, like, can you know, yeah, she'll be who she'll be kind of, which is really positive and lovely.

Rina 16:48 

But also, you want to shake them sometimes because, Arbs is like you like, so chill. And I remember like being pregnant and like throughout the pregnancy being flagged with things that were okay, but not quite 100%. And obviously, like, mom and also being like, super anxious. I'm like, Shit, this is bad. This is wrong. While, he's like, No, it's fine. Like, she might not be 100%. But you know, she's like, 70%. Okay, so we can just like roll on that train and see what happens when she's born and it's all going to be okay. And I think like, once she was born, and we got like, all the diagnosis, I resented him, I'm like, you piece of shit. You've made me believe that it's all gonna be okay. And it's not. Did you have like that kind of argument where you're like, look, there's something wrong. And you were like, No,

George 17:41

Well we had similar things with Ada before she was born, in terms of like,

Clare 17:50 

So at the 12 week scan, she was we were given a one in, I think it was like one in 20 chance that she would be born with Downs syndrome. And I didn't want to have the amniocentesis because there was like a one in 100 chance of a miscarriage. And it was already 12 weeks. And I knew, I knew as soon as I found out that I was pregnant with Ada that I was gonna have her. Like I said to George that night, like, look, you're very welcome to be not involved. Like, I know, you're young, like I know, we've just met, like, you know, my plan was like, just go live with my mom.If that was the case, except he was like, What, no, let's do this. This would be cool. But, so yeah, throughout the whole pregnancy, we didn't know if Ada had Downs syndrome or not. We had scans every month, didn't we? Because they needed to check that her like brain and heart were. So like, I was kind of like, and so I researched as much as I could like, being the parent of a child that had disabilities that was disabled. So much more information than now than there was even eight years ago, which just fills me with, like, absolute hope, for the future for other parents that are you know, like us that, you know, it's just, it's always it's always getting it's always get better. But I started, I think I said to you, and she was about two, I think I said I think she's autistic. And you were like, nah.

Rina 19:42 

When did the penny drop for you? Like, when were you like, right, okay, I see something now.

George 19:50 

Probably just at the diagnosis, to be honest. Because you don't know, you know, your experience of autism. At that point. You're like, you know, what, the science actually is still very young. Sometimes, kids develop differently. So I was like, you know, you kind of always go on the, you know, this comes back to the chill dude thing, chill dudes, they present with chill a lot of the time, but most of the time, we're actually just being chilled for the sake of the other person. That's it, it's like, you know, like, it's gonna be fine. And like, sometimes you just internalising like, oh, actually, maybe things aren't gonna be fine. That's, that's an insight into the chilled dude i.

Clare 20:38 

Also, this is like, at this point, we haven't been together that long. Do you know what I mean? So like, whereas now, we would just talk about,

George 20:48 

Of course, now we understand and communicate

Clare 20:50 

Yeah, we also just understand each other like because at the end of the day, we met... and nine months later, we had a baby. And then very quickly, things were you know, she was developing slower than other kids. And you know, before we knew it, we were at her one year health visitor check and the health visitor. She was like Ada needs to have some other checks because she's not meeting she has not met really any of her milestones like, yeah, by what by one, like, you know, she wasn't crawling, she could roll one way. So they referred us to the neuro-disability unit at the Royal Free and I remember getting this letter .. well she said she was referring me to an occupational therapist. And I was like, okay, and I remember getting this letter, and it was like from the neuro-disability department. And I remember phoning them up, and I was like, Why have I got this letter? My kid isn't disabled. Like, why would you? You know, like, because I was f**king freaked out. I was like, what is what is this? And obviously now I'm like, Oh, my God, like, you know, half of my brain is made up of acronyms. Like the gazillion forms the paperwork that comes with being a parent of a disabled child. Yeah. And we went in, didn't we? Betty, she was incredible. And yeah, over that next year, they put Ada in like little splints, and she had a zimmer frame and she learnt to walk and we did loads of hydrotherapy at the same school that Ada and Lua go to the pool. It’s super hot there.

Lauren 22:39 

So tell us about the autism diagnosis for Ada,  when it all came together for you?

George 22:48 

Yeah. So yeah, we had the got the diagnosis. We had to...they did a bunch of those those tests with like a weird rabbit that jumps and you have to interact with it.That was the main thing I remembered from that. It's still quite like, when I think back to it, some of it is quite blurry, that specific moment of when you're in the room, but just remember there being a big row of people. There's quite a few different doctors and stuff. When it came to giving us the result

Clare 23:21 

Oh the diagnosis

George 23:21 

The diagnosis meeting. And that yeah, I guess at that point, you just don't know. I for me, I didn't know which way I was gonna go. It was probably different for Claire. But I was like, that point. I was like, 50:50.. Either way, doesn't matter. And then yeah, and then they said it and then you just kind of hit and just like, Okay, you just kind of stunned in silence for a bit just being like, okay, trying to  process it. I think for you, Clare. I think it was quite an instant reactions.

Clare 23:54 

And, yeah, well, I look, I knew that Ada was autistic. But you know, she was she was just three years old. She just turned three when she was diagnosed. And and I actually remember the health professional saying, are you sure you want to go through this? Because once she's got the diagnosis, she's got it. And I was like, Well, yeah, I'd like to be able to, you know, help with help everything else. Everything else, you know, and understand and, you know, start to learn but, you know, not only was Ada two or three, just three, only three years old, I was also eight weeks pregnant with Ivo. And

Rina 24:41 

Oh man

did you know that you're pregnant at the time?

Clare 24:44 

Oh, yeah. I knew I knew. And yeah, it's really overwhelming. You know, you're in this you're in a you're in a room with all sorts of different doctors, and they're all looking really sort of grave and like the woman that delivered the news to us like she's like really, really lovely. Really nice, but like her eyes filled with tears.

Lauren 25:10 

Giving the diagnosis?

Clare 25:12

Yeah, well, because obviously she's she reacted to maybe she reacted.. like me, and her just really got on. I didn't know she reacted to maybe how, because even though I knew Ada was autistic, I wasyou know, I was completely like, gut punched when I got this diagnosis. It was relief. But it was also like fear of the unknown. And also I remember saying, and I feel so... I feel almost embarrassed to admit this. But I feel like I should be honest, I think the first thing I said was will my baby get it as well. Like it was something that you caught. You know, I remember like, and then actually, you know,as my pregnancy went on, I actually started to think you know, if Ivo if, if the baby is growing, did have autism. It was all I knew, were they actually from having a baby, so it would be okay. It would all be okay. And just kept going with it. But it was like, yeah. And you know what really f**king sucked, actually about this whole thing was like people's pity. And like so many people that I, that I know, were so wonderful and just like it's fine, it's great. You know, everybody actually, when you start talking about autism, everyone knows someone that's autistic, whether it's someone directly in their own family, whether it's a, you know, a second cousin, whether it's their best friend's cousin, like whether it's someone at school, like everyone has some sort of an experience with autism that isn't just like Rainman. Do you know what I mean? But there were a few people that, you know, when I told them, we're like, devastated for me, and we're like, we're so so sorry. And I remember saying like, it's not a death sentence. Yeah. You know, she's very, very f**king happy in her world, like, you know, you all know Ada, like, and for anyone that's listening that knows Ada, you know, she is this incredible, magical, funny, sassy, clever little person.

Lauren 27:52 

Her smile.. it just like beams.

Clare 27:55 

Yeah, she's just, you know, she's just like, you know, she's like, made up of me and George and herself, isn't she like, she's just like, she's really, really, really great. And yes, it's really hard. Not being able to communicate, we communicate in our own ways, obviously, but not being able to have that traditional way of like, vocal communication. Of course, that's hard.

Lauren 28:24 

How was that with both of you, in those kind of early days? Like, did you have disagreements around sorry to kind of treat this as a couples counselling..

Clare 28:35 

It certainly is cheaper than...

Lauren 28:38 

yeah, yeah, there's just a fiver guys. And so...But sometimes, I know, Patrick, and I have found we've been not being able to communicate that well, you sort of speculate on how how I suppose it's a case for all children...What do they need? How are they feeling? And sometimes we disagree, shall we say? Or in terms of how you kind of managed the, I guess, learning about autism and what steps or other ways you might help Ada?

George 29:17 

To be honest, I think, from the point of diagnosis, like, once we knew what the assignment was, it's like,

Lauren 29:26 

I love this guys… assignment and deadlines you’ve both mentioned. I’m getting a…

George 29:31 

You start learning about it. And even, you know, the early birds course, we did that was so super useful. And I think that really did help us understand a lot. And I think we've both always been on the same sort of page in terms of her and how we deal with her and her needs. Like I don't see.

Clare 29:53 

Yeah, like, I think like, even though, you know, we're traditionally different people in terms of like, extrovert versus introvert, whatever, like, our parenting styles together, actually, really..it aligns very well. And like, I never like think like, Oh, why is he doing it that way? You know, and, you know, obviously, sometimes there's things you have to, you know, like, we had to talk a little while ago about how I was like, riling the kids up before bedtime, like, I was like, bedtime, it's party time. And George is like what the f**k guys like, it's not party time! like, you need to turn it down a bit. It's funny, I went to my therapist, because I go to one each week. And she was like, how is this week like, well, you know, and I was like, try think about what happened that week is like, yeah, George, they said this thing about parenting. And he was like, she's like, What did you say? And I was like, Well, you know, I was just trying to like, be like, fun time mom, because, you know, I'm pumped up and she was like, you know, she's, she's Australian and she's so great. She's was just like, "bedtime is not party time. Clare it is not party time”

George 31:20 

I guess its like routine. I do. I do have like routines that I'd tend to stick to probably that bit of autism in me, or something, whatever.

Clare 31:32 

But yeah, well it was interesting because we watched we watched something together recently it was the Paddy and Christine McGuiness show that they did. And I was like, I don't want to watch this and then like, and then actually, there's the scene where Christine goes to see Simon Baron Cohen. And she has done this test and it turns out she's autistic. And I got hold of the tests. And like, I said, like, please be autistic. Please be autistic. Like for me, right. I was like, I want to be autistic. And like, you know, the reason I wanted to be autistic when I did this test was so that I could be like, Ada. I'm just like you! Anyway, yeah. Yeah. Like, listen, don't get me wrong. I know. It's really this, like, ableist world is like, really f**king difficult to be disabled. And it is. Anyway, I did the task. And I was like, so not autistic. It wasn't even funny it. I was like, negative autistic, like,  like, off the page, not autistic. And then George did the test and was like, higher scoring in the autism test. Yeah. And then you did it again, a few days later. Because you know, how you do tests? Like, I always used to do tests in magazines, you know, like, who am I gonna marry or whatever, and you didn't like get the answer. So you sort of, like, do it again, a couple of days. Like, like, it's like, maybe now I'm gonna get that one. Like, Goerge did the test again. And he was even higher I was just like,

Lauren 33:19 

It's not a competition guys!

Clare 33:22 

Isn't competition? I mean, God knows how htis is going to come across!

George 33:24 

Yeah, I think again, it wasn't a proper diagnosis, just an online test, but you just start reflecting on like, your own behaviours, why you do stuff? And then why I have these routines that I do. And it's like, yeah, whatever. It's like, you know, maybe there is a part of me that has some of those traits.

Rina 33:44 

I mean, they kind of say that everybody falls on it.

George 33:47 

Yeah. So, but yeah, again, it just makes you It reinforces that idea. That routine is very important for someone like Ada as well. Yeah. So I need these routines, she needs these routines. We all need these routines to kind of make life we've, you know, we fall into a good routine sort of daily, once, obviously, once a summer holidays, different stories.

Lauren 34:16 

So before we that diagnosis, you taken the decision to have a second child together. And that was a conscious decision?

Clare 34:29 

Yeah, we actually, we wanted to plan when we were gonna have the second one because obviously, with Ada, it was very rando!

Lauren 34:40 

So you went to those club toilets..

Clare 34:44 

Alibi and got knocked up in the toilet.

George 34:48 

No, we talked about it. And we planned and we were, you know, actively trying stuff.

Lauren 34:53 

So then you were pregnant. And then he had an Ivo, before you had Ivo, you got the diagnosis of Ada's, autism. And you guys are going through all of this in like lightning speed. How did you find time to kind of, I don't want to use the word..actually, I can't think of a better one, your relationship? How did you spend time together and like, you know, make sure that everything was good. Between the two of you, when all of this like was going on, it must be pretty intense.

Clare 35:20 

What we really started doing is,you know, really putting time in now to you know, we go out like, once or twice a month we get babysitter and like, we just go out and eat and talk and because for those years that we didn't go out, we were just eating and talking but just at home, you know, like we enjoy each other's company. Like,

Rina 35:44 

But it's different when you're away from your house.

George 35:48 

Exactly. Yeah. Fall into like the routines.

Rina 35:53 

Yeah, exactly. Having a child with a disability. I think it's so like women have so much support that also we're so much more vocal like we're going through a shit time. We do tend to reach out to other people. But you guys seem to be as you said yourself, you kind of internalise everything. How have you found it being the parent of a child with a disability? Have you found a network of other people to kind of reach out to? Have you felt? What's What's it been like?

I know, that's the thing is it has been for me, it's who I talk I guess is Clare maybe and friends, my existing friends. I think it's quite difficult. I don't, it's probably a me thing and a man thing in general to reach out to other people, you know, I tend to have some element of social anxiety as well, just meeting new people. It's kind of awkward. So that's, there's that element of it. So I've not really connected as much or made a network like, you know, talk to everyone else's partners, when there's events that we are all out and stuff, but not to the point where I've just kind of been able to sit down and chat with another dad and be like, Hey, how's it going? Yeah, thing, but, you know, I've got, I've got friends that I talked to, who aren't in the same boat. So it's good. And sometimes, it's not as useful, I guess. Whereas I see your guys in the groups that you have, you actually just talk and it is really real and stuff. So like, I think for me, you know, and when I do go out is, you know, don't go out too often not great at making plans for myself. So I'll go I'll go out maybe once a month with like, a few friends. And then you're just, you kind of don't want to talk about it..

Lauren 37:45 

getting away from it

George 37:46 

Yeah, it's a bit of an escape, at that point. If things are going great, then obviously, you talk about good stuff. But if things are not going so good getting bad sleep, that kind of stuff you like, just want to like eat a meal and chat about random crap. And then you say how great a parent I am because I have a disabled child and things like that.

Clare 38:09 

Sorry, a lot of your friends don't actually have kids.

George 38:12 

 Yeah, it's true

Clare 38:15 

You know, I mean, like, they're still like, they're still out there. They're still out there. Waiting to spread their seed. If you know anyone who needs to be hooked up - George has got some.

George 38:25 

They are super, they are so supportive. But at the same time, you know, maybe you do need that extra level, just like, Yeah, this is very specific. Yeah... the experiences of parents SEN parents can be very specific. Yeah. And so a lot of the time, I just I actually get a lot of therapy from what Clare just passes on to me from everyone else that she talks to..So I'm getting like, whatever.

Clare 38:56 

Oh, yeah, I'll be getting messages I'm like Oh, my God. Look at this

Lauren 39:00 

Patrick, has the same for sure.

George 39:02 

But I think is, you know, there does need to be an element of us being able to connect more as, you know, Dads and stuff like that, and just chat.. talk about these things and not internalise.

Clare 39:14 

I mean, completely and I actually, you know, if I have one regret, and I don't have many, but if I have one regret, it's not. You know, we came together this this group of women and you know, who do this podcast and we support each other. I would have tried to find people like that so much earlier on, instead of being lost for a few years. Yeah. You know, like, it's

Rina 39:50 

I think it takes time for you to be... I think we were all sort of ready to be..

Clare 39:54 

I mean Rina, you… Okay, here we go. And on this round of expose the hurts. So before the pandemic and Rina and I go to the same... our kids go to the same school. Like, I remember, I'd always like see, Rina, like, on the way to school or waiting in reception. She should always have headphones or whatever. And I know now it's actually because she was always listening to f**king podcasts... anyway. Here's the super cute woman that like doesn't talk to anybody and doesn't make eye contact with anybody. And she's got this like, kid that is like so sassy and funny because like Lua just is sassy and funny. And I was like, I'm gonna get her and that's gonna get her. I'm gonna get this mum. And then I proceeded to think about Rina ...for a while, and then plan to like get to school early to like, eventually I started like to say, I think she's like, I'm like, this girl is not even gonna look at me. I'm like, so eventually, just as soon as I catch her eye, I'd be like, hey, and she's like, kind of meh.. hey, And then, and then, you know, obviously as soon as she would pick up Lua or like her headphones would come off, but she was like straight into conversation with Lua, who was a baby at that point who was definitely not in a conversation back. And I think I first grabbed you did I grab you on the street or something, but I got this group of women, and then we're about five people in the group, like, you know, you're gonna..

Rina 41:45 

You, like, slowly would say hello. And like, the thing is, Clare is so cool that I was so intimidated by her. I was like, I am not worthy of talking to this woman. And she keeps staring at me, and what am I gonna say? Like, okay, so..

Clare 42:01 

I hope you didn’t think I was a psychopath. Becuase I was like, plotting my friendship with you.

Lauren 42:08 

A slow seduction.

Rina 42:08 

And then, like, slowly, she wore me down to like, have actual conversation,

Clare 42:14 

if I can give anyone any, any advice? And if that's okay, you know, it would just be you know, if your child is diagnosed with any sort of disability, like to just seek out other parents that are at the same sort of point as well.

Lauren 42:31 

What about you, George, what do you wish you had known in those early days that you've learned, Clare saying, reaching out to people is so important, and giving that advice to other people as well to reach out and find other people to talk to?

George 42:47 

I think that journey is still one for me to progress towards... reaching out to people more. But I probably say that there's a couple of things just about being in society or, in general strangers is just not caring or not, not, not caring what other people think it's like, not in like an antagonistic way, it's like, it's more like if someone's stares. I don't care, that you're staring like Ada's having a meltdown, like and it's chaos, she'll drop on the floor, she will scream for ages, and then just not caring about what other people think. But like, what people are doing, because they may be staring at Ada. But at the same time, I'm not angry at them through it. But because I was in that position once too I didn't understand what's going on with a lot of people. And that's another part of it is understanding what is going on with people, neurodiversity, you don't notice it. And you notice it's so much more now with the interactions with everyone around.

Clare 44:01 

You're so good at it now though.

George 44:04 

You kind of feel in tune with it a bit, because you notice it and there's just like, you know, if someone's not interacting a certain way, someone's like, being really, like really friendly and talkative, overly friendly, talkative, and just wanting to chat and like a lot. But in the past, I would have been like, who's this person trying to and then you kind of realise, okay, like, you know, it's less of a social filter that I'm happy to chat or you see someone, like, acting a certain way. Yeah, doesn't want to talk because, you know, maybe stimming, as we call it, that Ada stims with a ribbon, some people still move in other ways. And they are just doing what they're doing. Don't...you know? It's yeah, don't judge.... when I was a lot younger, you grew up and with different children and stuff and you're like, you don't know it, then you're a bit ignorant to it. So you just react differently to people

Rina 45:05 

Did you both have any experience with autism pre Ada? Or was she kind of your introduction into that world?

Clare 45:17 

There was a girl when I was growing up when I lived in New Zealand, she was she had two brothers, I think they were twins and one was autistic and one wasn't. And I realised that now and I remember hearing the word autism but I, you know, was sort of led to believe that it was just naughty, or like a difficult child. She know what I mean. And actually, my friend was awesome. Like, she like, was always like, defending him and and looking after him, but that was that was kind of it. But although obviously now when I think back is like, gosh, so many of the children at school and so many people whose paths we've crossed. I've crossed like who are autistic.

Lauren 46:15 

Yeah. I feel that actually

Clare 46:17 

I just, you know, just going back on what George was saying that, you know, I was in. Sorry, we were away recently on the coast and he had a, she was just feeling super dysregulated had a meltdown was on the floor. And you know, right now, these days if Ada needs to lay on the pavement to regulate, I'm like, babe.. regulate. Yeah, you know, I just stand there and like, it's cool. And this couple came and stood right by her. And we're like, staring and I was about two seconds away from being like, F**k off, just f**k off. And the woman goes, she autistic? And I was like, yeah, she's like, I'm autistic. And I was like, Cool! She's like, she's having a meltdown. And she's like, Don't worry, darling. I have meltdowns all the time. I know how you feel. You just need to do what you're doing. And, and her partner was like, me, too, we'll stand here until you're okay. And I wanted to cry. And I was so happy that it didn't look lose it or say anything. Because, you know, I was like, tired and stressed at that point. But actually, I was just like,

Rina 47:32 

there were good people.

Clare 47:33 

Oh I wanted to I wanted to I wanted to just like cry and I wanted to cuddle these two and be like, we're totally legends. And in fact, i didn't cuddle them because like, Don't cuddle strangers. That don't want to be f**king cuddled. It's fine. Like, but I was like, No, you dudes are Awesome. Like, thank you so much. Like Ada got up there. And they were Like you can do it. Yeah, you can do it. And I was like, Yeah, you can do it. Like, as literally this is just f**king great!

Lauren 47:58 

Did Ada react to this couple?

Clare 48:02 

No, she just wanted an ice cream. She might have been having a tantrum. But like, in saying that, as you know, she she wants she wanted an ice cream. But though she did say "bye" Ada is funny, she's like, she's hardcore, man. If she doesn't like you. She like take your hand and walk you to the front door. And she'll just look at you just say "it's finished".

Lauren 48:33 

I love that. Can I Can I introduce her to some people? Not, Patrick!

Clare 48:40 

You can you can just you can just take the hint.. it's finished.. it's very it's very Devil Wears Prada. Yeah, "that's all". Yeah. Oh.

Rina 48:51 

What. A. Legend

Clare 48:51 

I know. It's funny. I remember the first time she said that. I was like,

Rina 48:57 

Did you like the person that she did it to?

Clare 48:59 

No know, I felt weird about this person. And it was like, someone around the diagnosis sort of time. That was just as a bit of a weird vibe. Ada's good with vibes of people.. You know, she knows.

Rina 49:13 

I think all of our kids are. Yeah, they know

Clare 49:16 

they know, they know.

Lauren 49:17 

Okay, bring it back to relationships for a second. And it's often talked about, isn't it that parents of children with disabilities, often their relationships or marriages are more likely to fail? I don't know if the stats are genuine on that. But yeah, you hear it cited all the time that like the odds for your marriage surviving are grim. Sorry to bring it down, guys. But even just your relationship?

Yeah. And single parents, yeah. Okay. Yeah, Relationships are hard. And you can understand that right? The intensity of caring and the costs of raising disabled children. There's so many other things that could correlate with that. But I guess you guys seem to have done it, like in a slightly different and unique way...your relationship has developed as you were pregnant, and had children and got the diagnosis and sort of voyaged into this Disabled Parenting world? What would be your advice to other couples guys? What would like what's been the thing that's really made it work for you guys?

George 50:20 

Um, I would say, it takes it takes work, like, sometimes you can get really complacent. And then your relationship r can be in a bad place, but you have to really communicate about it and talk about the issues because, you know, it's hard. You know, there are different challenges that we have as parents of Ada and, you know, these things kind of impact your well being and your, your health and your mental health and how you are with each other. So, if you share that, more then you know what's going on with each other, and you're able to kind of tackle these issues together.

Lauren 51:00 

Great answer.

Clare 51:02 

Yeah, I think you just have to try and have as much fun with it as possible. You have to give each other space. You have to go out on dates, like make sure you just go out like once a month together. Any relationship um, you know, our relationship is like, by no means perfect, but we spend a lot of time laughing. And, yeah, finding space to talk, but also finding, you know, I think it's really important to talk to other other people. And just be honest, you know, that's, you know, I'm a great advocate for therapy, because as I said before, it's completely changed my life. And for having a support network. You know, I'm very honest. And I'm very honest with George about how I feel too... I don't know, it just it just works with us. Like, do you know what, just being really f**king kind to each other as well? Like, don't pick at each other? I think. I think just being just being kind even, like, the smallest thing can be like, can be like a nice thing, like, you know, f**king cup of tea in the morning or a glass of wine at night, or vice versa.

Lauren 53:13 

Yeah.

Clare 52:16 

That's a funny joke, you know, George came home from work today. And I was just, like, really happy to see him. Guys. Good today, because he was looking really good. Like, am I looking good? You know, it's like,

Rina 52:34 

You make each other feel good.

Clare 52:35 

Yeah. You know, we're friends. Yeah. Yeah, you might argue with a friend sometime too, but you love your friends. And essentially, you just being kind and respectful to each other, and also giving each other space. I know now, if I'm really overwhelmed, I just sometimes need to go for a walk. To like, so that I don't just, like, fly off into some like, zone.

George 53:05 

And you understand that of me too. And tell me to go for a walk

Clare 53:15 

Or do the therapy

George 53:17 

She's recognising like, okay, he's getting a bit stressed, , you know, sometimes can then come back and just out of the situation just feel a lot better.

Clare 53:27 

Even in the morning. You know, we were away with family. And like, my family is big and intense and scouse and like, fantastic. And, you know, winning, I was like, just, maybe you should go out for like, because I, you're quite unlikely to say, I need a minute. Yeah. Whereas I'm much more likely to be like, I need a minute. Yeah. So with George, I also try to remind him that it's actually okay to take a f**king minute, you know, like, go out get a cup of coffee in the morning on your own. Like, just get away. Yeah. Do that now. Like, what do you go out on your bike? Or, you know, recently, like, you went out and got dinner on your own, which is kind of cute. Like, great. Like, the guy gave you a free beer.

George 54:16 

a free rose!

Rina 54:20 

It's nice because you feel a friendship because Arbs andI have the same.. our story is very similar to yours. Yeah. But it's kind of on a flip side. We were friends for a very long time. But were otherwise occupied with other people, got together. And then I fell pregnant three and a half, four months into the relationship with Lua. So it was like, quick, and we both knew, like, this is what we want. Yeah. As you guys know, I didn't realise that that so cool. Yeah, very similar. But because we already had that friendship for like 10 years. Although we didn't see each other all the time. I've known him since I was 15. So he knew me at like, Baby Rina like, and had seen me develop into the 25 year old that he then yeah, 25 year old that he fell in love with so he'd seen me kind of grow up. And that that level of like friendship was already there. And I think that massively helped with the diagnosis and like the shit that went on with Lua because, yeah, it would have been like nuts if we kind of but

Clare 55:21  

It is, it is it is a friendship. Yeah. Also, if you do you have a fight like make up as soon as you can.

Lauren 55:31 

I'm a big advocate for that. Can't keep it going for like longer than like half an hour if we like, yeah.

Rina 55:38 

I've never gone to bed mad. I will like do not agree to like, take a breather and like, no, like, for me. It's like, you get mad you scream at each other. We have to fix it. Like,

Clare 55:48 

yeah, like go out, get some air, come back, but

Rina 55:51 

do not sleep on it. Like I just think it just instigates more of a I don't know bad energy, energies are bit

Clare 55:59 

Well it's how, you know, it's how it works for you. And it's how it works for us and you know, and, and other people are different and that's fine too. Like there's, you know, there's many couples out there that like argue and then like, need weeks to like, go through it and then that's fine, too. But those times, yes, it happens, you know. But like, for us, you know, as I said, at the beginning of this, we've been together for nearly 10 years, but it still feels like so fresh so much of the time, you know, it was so fun getting married, because we got to go on a honeymoon, which meant we get to go away for four nights on our own.

George 56:38 

We're getting to know each other over time, we also get to know each other's strengths and what we're good at as a relationship and working together with our children. But you have to understand that within each other for the relationship to work, so I'm good at doing certain things. Clare is good at doing certain Yeah, because a lot of fights can happen from like, Oh, you're not doing enough of this, you're not doing enough of that. You need that you get in the rhythm, you're like, Okay, this is what I'm good at this is what you're good at, let's, we will, will converge on some things we do. But we will just, you know, stay in our lanes and other bits, and we'll help each other out when we can for them. But

Lauren 57:16 

that's so true. It's so

Clare 57:18 

True. Because it's like George, and I wrote down like a list of everything that we did, it would not be totally equal, like, and in fact, I think it would actually look like George was doing so much more, actually. Whereas any fights that we have, had have generally been around me being worried that I don't do enough, but actually, I do so much. Like, especially around Ada in terms of just in terms of so much paperwork.

George 57:54 

that stuff, like I know, like, you know, could get involved in that. But it's the paperwork element you're just so good at and then like my strengths are, I can get up. Like, really early. I need less sleep, it's just how it is.

Clare 58:08 

Yeah, it's actually a fact with the two hours that George actually operates better on less sleep and I operate better on more sleep

Rina 58:17 

it is like listening to me, and Arbs I'm so f**king weird..

Clare 58:22 

is it time for a double date?

Oh, my goodness, oh, my god, maybe George is gonna find his dad friend. Like, because he does have some fat friends?

No, like, totally, like,

George 58:37 

It is being accepting of that because of that. Yeah. You know, we've only come to this realisation.

Clare 58:45 

Recently, yeah.

Lauren 58:46 

And it's not just that division of like, labour. Yeah, like, it's actually what perspectives are you coming from? So, you know, you talked earlier about, like, your different kind of personality types. And yeah, and that also merges into what you're good at, I find that with Patrick as well. And also just kind of, I, it's a balance, isn't it, I feel I'm like doing more of the caring role, because I quit my job in order to do that. And, you know, there are elements of that, that I'm definitely better at. But then there are things that he's much better at. And he's also really good at reminding me to, like, come out of that. It's like I pull him in to like that world, when he needs to remind him to kind of be pulled into that world sometimes because his work consumes so much of his time that he's kind of in that world. But then he pulls me out of that world as well and reminds me like, Come on, let's just go out. There'll be fine. Let's get a babysitter and go and do something fun. Why don't we go stay away for a night in a hotel? Or like, yeah, you know, and are you happy?

Clare 59:46 

Patrick is so super fun.

Lauren 59:49 

Are you saying I'm not Clare?

Clare 59:55 

But like Patrick is like, you know, you know, without a shadow of a doubt one of my favourite dads, because, He's silly, funny, clever. I think the fact that he can just say to you, hey, like, Just come with us. Come

Lauren 1:00:13 

away. Yeah,

Clare 1:00:14 

Come away from it. Yeah, it's fine. They're fine with a babysitter tonight. We're gonna go out be silly. You know, it's um, yeah, doing that going out being silly.

Lauren 1:00:27 

So that's it everyone. Everyone listening. Go out. be silly. be silly. Find people who can look after your children. That's not easy. I'm not going to pretend that it's easy or cheap, but find people who can look after your children and go out and be silly. You can be the dream couple that is Clare and George.

Rina 1:00:47 

Hast Tag couple goals!

Clare 1:00:49 

As Ada would say... it's finsihed.

Lauren 1:00:55 

But it's not guys. We've got one more question. It's a quick one

Rina 1:01:04 

Last question. What's your f**king normal? So it can be something really weird, really random. that encapsulates something that's very normal to you guys.

Clare 1:01:16  

Okay, go on George.

George 1:01:19 

Our f**king normal is asking Ada not to stim on every single dog's tail that she sees.

Lauren 1:01:24 

Oh, gosh.

George 1:01:26 

It's quite funny. Dog owners are quite understanding.

Clare 1:01:30 

Some, it depends on the heath

George 1:01:33 

and the breed of dogs.

If they're a rare breed on their way to Crufts

Lauren 1:01:51 

Thank you so much, guys. That concludes your therapy session couples therapy session. I think you're just doing a gorgeous, wonderful couple. Thank you totally.

Rina 1:02:03 

Thank you so so so so much and Arbs and I will join you for a double date

Lauren 1:02:09 

Have fun guys!

Clare 1:02:10 

We should go bowling or something..Fabulous

~music starts~

Lauren 1:02:17

Thank you so much for listening to the f**king normal podcast. We love making this podcast. Yes, we do. We are part of a much bigger team almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences.

Rina 1:02:38

So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at FkingNormalpodcast.com That's f k ing normal podcast.com you can join us on Facebook and on Instagram at fkingnormal_podcast. That's f king normal underscore podcast. You can get all the links and more information in the show notes below.

Lauren 1:03:02

So thanks so much for listening all the way to the end. We'll see you next time.

Hello from your hosts

Hello from your hosts and What is your f**king Normal? 

SPEAKERS

Lauren Fenton, Rina Teslica

Standard Introduction

~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Lauren Fenton  00:22

Hi this is just a quick check in from your hosts of the f**king normal podcast. Rina 

Rina Teslica  00:28

Hi

Lauren Fenton 00:29

and me Lauren. I am so grateful for everyone who has taken the time to listen, like and give us feedback Rina since we started the podcast 

Rina Teslica 00:40

It’s insane. Absolutely insane

Lauren Fenton 00:43

It’s really exciting…and this is what the podcast is about. It’s about connecting and we’re really keen to do more of that and build a community around this podcast. It’s not just about us talking and you listening, but about connecting more.

Rina Teslica 00:58

You may have noticed that we have changed to a new feature. Our f**king normal. We love sharing our weird and wonderful daily experiences we have parenting disabled children, but what are yours dear listener? Send them through on Instagram @fkingnormal_podcast or email at fkingnormalpodcast@gmail.com or just drop us a message on Facebook where you can find us fkingnormalpodcast. If you’ve got any ideas on what you want to hear from us guests you’d like to see on the pod or anything else then please let us know. But to kick off, here’s a collection of our F**king Normal….

~audio plays with different voices and musical backdrop.~ 01:36

“Watching Justine Timberlake, ‘Can’t stop the feeling’ on YouTube with my 6 year old at least twice a day since he was about 9 months old”

“Communicating our love for one another through signs and pictures”

“Regularly having the hoist controls fall on my head whilst I’m brushing my teeth”

“carrying my daughter round every single cupboard and shelf in the kitchen and the fridge, only to realise that she didn’t want a snack in the first place”

“Lying about my daughters age more than my own because i can’t be bothered to explain to people why she’s so small”

“Permanently living with 6 helium balloons bobbing around my lounge”

“Assessing every single pavement for the nearest drop-curve”

“Slowing things down to his pace and realising… what’s the rush?”

~Music continues “wake me up, loud as clouds, all my love for you” 

Episode 5: Advocacy

Standard Introduction

~music - “Wake me up, loud as clouds.. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Lauren Fenton  00:17

This is the f**king normal podcast, the cheers, tears and Friday night beers of parenting disabled children.

Rina Teslica  00:24

I'm Rina,

Lauren Fenton  00:25

and I'm Lauren.

Rina Teslica  00:26

And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories, and chat about the things that we've learned and are still learning.

Lauren Fenton  00:40

Prepare to sometimes laugh, sometimes cry, but hopefully leave with a shot of optimism in your arm. And don't forget, we are talking from a parent's perspective, we would never presume to talk on behalf of a disabled child or adult. So expect bad language, and quite frankly, some brutal honesty.

Rina Teslica  01:00

Because really, what the f**k is normal anyway?

Lauren Fenton  01:15

Hello, and welcome back to another episode of the f**king normal podcast where today our topic is advocacy. Before we get into what we mean by advocacy, and why we've chosen it as a topic, we just wanted to say that this is our first episode since- or podcast episodes - since we went live. So for all the people who have listened, subscribed, given comments and liked, thank you so much, it really means so much to us. And it's why we're doing it. So we're really, really chuffed.

Rina Teslica  01:50

Thank you. And on that note, if there are topics or people that you think would be great for the podcast, please give us a shout on all of our social media platforms and let us know.

Lauren Fenton  02:01

More details will be at the end as usual. Perfect. So, what is advocacy?

So advocacy is defined as putting forward a case on someone else's behalf or on behalf of a cause or a policy. And I think most of us raising disabled kids will attest, we have quickly needed to develop this skill. It's not that you don't have to advocate for your children if you're a parent regardless, but it's just something that is so important when systems of support aren't always automatically or easily in place for your family. The world is largely not designed for disabled people. So in navigating this system, you have to champion, you have to persuade and shout loudly on our kid's behalf. There's so many instances, it's the school, therapy, hospitals, even the playground where you need to persuade or fight for the support that you need and your child, that your child needs. Perhaps most of all, when a child is nonverbal or limited in their own communication skills, and it doesn't end there. You most likely need to find others who can advocate for your child both alongside you and God forbid if and when you're no longer around. And then where possible. How do you teach your child to advocate for themselves? It's f**king exhausting. And in fact I'm exhausted just saying all of that.

Rina Teslica 03:25

Hear hear! totally attest to everything that you're saying, which is why we are so incredibly excited to have the perfect guest here with us to talk about advocacy. A lawyer and our friend, the wonderful Caroline MacPake or Withers professionally. She is a lawyer, as well as the senior sponsor for Virgin and O2's Disability Network. She's also a mum of two. She's mum to Rufus three, and Dottie who's five. And it's Dottie that inaugurated Caroline into the role of a SEN mum as Dottie was born with a rare genetic syndrome Mowat Wilson Syndrome. I'm sure Caroline will go into detail into how this condition affects Dottie, but I just want to say that she is the sweetest little girl I've ever met. And the Shakespearean quote, "Though she be but little she is fierce" is the most perfect quote for Dottie. So welcome Caroline to the podcast.

Caroline MacPake 04:19

I'm so glad to be here. And I'm so glad to be part of this and I'm excited for my therapy session to start!

Rina Teslica 04:24

Yes - Free therapy.

Lauren Fenton 04:28

Sorry there’s no couch!

Rina Teslica  04:30

But a cup of coffee will have to do . . . So let's start Caroline, why don't you share a little bit about Dottie and you and your life and everything that went on from kind of pregnancy? Up until now?

Caroline MacPake 04:43

Yeah, sure. Happy to. So Dottie is five at the moment - as you said, I mean, would I use the word 'sweet' to sum her up. Maybe, She's certainly fierce, she's a strong minded little lady. She's, she's a legend, she's cool, she, she knows what she wants and she knows how to get it. She is largely nonverbal as a result of her genetic condition Mowat Wilson syndrome. As you said, she has so much character and spirit, she loves music. She loves Queen and David Bowie, and she's just getting into punk music, which definitely sums up her general attitude. Matt, my husband and I often have to remind ourselves that us dealing with her firecracker personality is a small price to pay because that determination she has to get what she wants is something that's going to really serve her well and gives her the grit that she needs to overcome the challenges that she's got. So she is at the most amazing school for speech and language that is really, really helping, and she's doing really well in her communication. She also has some physical difficulties. She's got low muscle tone and hypermobility and some issues with fine motor, but she's overcome so much in her five years already. And we're so so proud of her. In terms of pregnancy, she was born at full term, it was a fairly straightforward pregnancy. She had some feeding issues, I couldn't breastfeed her and you have all of those hormones as a mother and that incredible pressure to do what you think is best for your child, which you know, having gone through all the NCT classes, kind of indoctrinated into breastfeeding, that's probably a whole other discussion in itself. And I really, really struggled. I definitely had some postnatal depression. But a lot of it was put down to kind of baby blues. I just had this feeling that something wasn't right. But I was told no, no, you know, you're worrying too much. family were kind of like had me down as a bit of an over worrying mum, which was something that hadn't been in my personality so far. So for me felt like a little bit unfair, like I was being sort of categorised in a certain way. So at her eight week check at the GP, the doctor noticed a head lag, which is often a sign of low muscle tone, so referred us to paediatrics.

Rina Teslica  07:14

So what what's a head lag?

Caroline MacPake  07:16

Oh, so it basically, they take a baby's two arms and pull them up. And if their head follows their body, there's like their neck strength sort of thing. So So if the head remained sort of floppy it's a sign of them being or having low muscle tone. So that was noted. And I kind of at that point went into overdrive. Red flag. Yeah. Oh, my God, there is something wrong and I need to do everything I can. So I was researching low muscle tone hypertonia. She got referred for a bunch of blood tests and other screening . .

Rina Teslica  07:48

. . because you were pushing?

Caroline MacPake 07:50

At that point, it has just gone through paediatrics. And so that's what they were kind of initial basic genetic. Standard Test. Yeah. And the doctor, amazing paediatrician said to me, well, hypotonia, or low muscle tone isn't a condition in itself. It's a symptom of what could be a different condition. But you know, don't get into overdrive trying to Google it, you know, well, you know, you'll see in due course, and everything else seems to be fine. So I did go into overdrive researching, like we all do. And one thing that I found was a Facebook group hypotonia UK. That introduced me for the first time to other parents who are living similar experiences, a lot of them looking for answers for this low muscle tone as well. And that's the first time that I felt like I wasn't crazy. There were other people that felt like me, and it gave me a lot of information as to what I was after I was hungry for information about what could this be? And yeah, like I said, it reassured me I wasn't this kind of fuss-pot parent that was looking for there to be a problem when there probably wasn't one. See, I felt validated it gave me a bit of confidence to keep pushing. So after that initial appointment where they did some blood tests, I got call from the doctor as I was packing up, Dottie was four months old and we were about to go to the Lake District for Christmas with my husband's family, ah, both our families actually and the doctor was kind of deliberately breezy said "Oh, you know, just come back to us. Well, we just need to rerun one one of the tests you know, nothing to worry about at this stage. But if you could come back in as soon as possible that would be great"

Rina Teslica 09:43

Why do they do that - most irritating thing ever? Like I just wish they would say on the phone just straight out straight up like look, there's a problem? Yeah, come back. Yeah. So you're not stressing the whole time and then oh . . 

Caroline MacPake  09:55

and yeah, I guess they're trying to be like, not make you worry when they don't know but yeah, of course you're going to worry and you jump to the worst possible scenario. So yeah, I pushed well got to hospital, they run, they run the tests again, or they took, there was a urine sample they took again. And I said, just tell me what it is. And she said to me, okay, well, it could be nothing, or it could be. And the urine sample that we took could have been contaminated. There's something that you're indicating that there could be a particular condition. And I said, just tell me what that is. And she said, Well, I'll tell you what it is. But don't google it. Why they say don't Google it every time. And so I googled it. And it was just, it was a condition where children die in early infancy, they have a rapid decline and pass away. And at that point, I just completely fell apart. Yeah I haven't thought about it for a while, yeah, I'm, I literally lost, lost lost it. I said to my husband, I don't want to live anymore. I just felt like, I didn't want to kill myself. But you know, I wanted to be there for Dottie, but I just wanted everything to stop and go away. I just didn't want anything to exist anymore. But obviously voicing those concerns, the GP called psychiatric services, they came around the house, and basically, all of a sudden, this thing escalated into, okay, we're gonna check you into, like a mental health ward with and you can take your child with you, but we're going to check you in and I was like, hang on a second. No, you know, I take it all back. It's fine. I'm fine. I, you know, I was like this, this is what I need, you know, I'm not going to feel better to being in some clique ward. With my child, I'm going to feel better knowing what I need to know about whatever it is that she's got. And so that's when I guess the first time that I can think of that I firmly stood by what I thought was best for me and for Dottie, and I just said, no, like, back off. No, that's not going to happen. And then I said to them, what I'm feeling isn't some sort of psychological response it is a rational response to the fact that I've been told that my child might die. And they kind of said, oh, yeah, okay, that makes sense. Yeah.

Lauren Fenton  12:20

Yeah, Jesus, presumably, thank God that you were able to kind of put the stoppers on that and to know, at that time,

Rina Teslica  12:29

mothers in general just don't have enough support across the board. Let alone when you have a child with a disability, it's like non existent.

Caroline MacPake 12:39

And you think about so so it turned out for us that they reran the tests. And I found out, you know, a few weeks later, the worst Christmas ever, but apart from that small price to pay, you know, found out it was indeed a false positive and Dottie didn't have that condition. And I felt like there'd been a miracle. You know, I still think to this day about the people that don't, don't get that kind of almost second chance. And the people who, Yeah, who knows how those people have been dealt with in terms of the support that they've been given. Anyway, so, so yeah, that I honestly felt in that situation, like dodged a bullet I carried on with this kind of relentless research, I channelled it more into sort of therapy options for Dottie. Because I had a feeling I was told that 'there's nothing wrong with your child', but I had this feeling that she was going to need more support. So through that hypertonia Facebook group, a lot of parents had mentioned Conductive Education, which is brilliant physical therapy, if anyone's children has hypertension child has hypotonia, I definitely recommend looking into Conductive Education and I signed Dottie up to an amazing provider. You know, I would research lycra suits and therapy options and all these different things. I know that on previous episodes, we've spoken about how people, you can go into overdrive as a coping mechanism. I definitely did that and there were definitely raised eyebrows around my whole family: "okay she's becoming a bit obsessive with this whole thing

Rina Teslica  14:15

If you can't control anything you're going to control that!

Caroline MacPake  14:17

Exactly. So then her had genetic panel came back clear. And I was told you know all Yes, she does have some symptoms here and there. But really, they're all within normal ranges. Yes, she's very, very kind of flexible and she's got low muscle tension, but you know what, there's Olympic athletes who have got hypermobility, so, you know, don't worry, I really felt that I was being dismissed. I wasn't being heard. You know, I was being brushed off by all of the medical people that I spoke to. And I carried on doing this research I one time I was wrong about something but I, I convinced myself she had this particular genetic condition and I managed to track down the email address of the geneticist, I emailed her directly, and I said, Look, you need to test for this. I'm almost certain she's got it. So they called us in and said, Look, we don't think she's got it. But just for your peace of mind, we will i.e. we're going to do this to shut you up. So we'll run the test for you. So they ran that test, and it did come back negative. And I just thought, no one's going to listen to me now. That was our last chance to get a diagnosis. But then, Dottie was 15 months when I became pregnant with her brother with Roo, he's now three. And I, again, Matt, my husband was not sure about us having a second child, my parents died when I was kind of around 19-20. And my brother is the only family that I've got, I mean, thinking about Dottie and the fact that she could possibly grow up with some difficulties or challenges in her life. I just thought she has to have a sibling, she has to have someone who can be there for her, if we're not. And so again, when we can maybe slightly obsessive wanting to have another child . . .

Lauren Fenton  16:05

it's very natural, like we've, we've covered the topic of siblings - I’m sure you’ve listened to the Siblings episode. Yeah,

Caroline MacPake  16:10

Yeah, absolutely. Yeah, I, same as I think it was covered in now I feel kind of guilty that I almost created another human being for that purpose. But you know, Roo is equally as amazing, as Dottie and, you know, they fight all the time oh my God, they don't protect each other in the slightest - maybe one day.  So I kind of used my pregnancy as another angle, then to get some more genetic testing done. So I called up or emailed the genetics team and said, I'm now pregnant, I'm concerned that my second child might have some of the same challenges as my first child, I think that you need to help run some more tests and agree to do whole exome sequencing at this point in time. Again, this was a different geneticist, this time, he looked at Dottie and said, there's nothing wrong with this child. But we'll run the test for your peace of mind. Clearly, you are. Clearly you're, you know, a worrying mother, but you're pregnant. So we need to take this seriously. So Roo was born just before Dottie's 2nd birthday. By that point, it'd become clear that Dottie did have something going on. So physically, she wasn't walking yet. She wasn't talking. She hadn't progressed between. Beyond age one, she sort of said, Yep, no, and then no more speech. And she was making really good progress with Conductive Education. But you know, it was it was clear that there was definitely something going on, to me at least. And I think Roo was about three months old, and I got a call out of the blue from the geneticist saying, 'We've got diagnosis for you. It's Mowat Wilson Syndrome, don't google it'. Literally,

Rina Teslica 18:05

Did you?

Caroline MacPake 18:07

Of course, I did. And I sat there in tears, because what I read was, you know, your child's gonna remain nonverbal for life, the children that I read about in, you know, these kind of medical case studies, were all very, very severely disabled. She wouldn't live an independent life. And yeah, we went to the geneticist who - I don't know if all geneticists are like this, they're obviously very intelligent people who are very focused on the science of that particular aspect of medicine, and they’re not focused on the patient bedside manner. So he kind of just He treated Dottie as a diagnosis. He didn't treat her as a human child, he, she was in the room with us, and he didn't look at her once. And instead, he kind of reeled off, she won't do this. She won't go to university. She's going to need care all her life, literally a list of the . .

Lauren Fenton  19:01

and you've got this little two year old next to him. Yeah,

Rina Teslica  19:03

. . and all you're wanting is some positivity in that moment.

Lauren Fenton 19:11

How can you be that prescriptive on a child's outcomes? That's just not . . .

Caroline MacPake 19:18

It was so definitive, so definitive, and I was like, 'How can ? - look at her - she's, she's communicating. She's not talking. But she's communicating. You know, she's kind of engaged with everything going on around her. And he's like, No, he actually drew a chart. I said, How can you tell me that - is she going to decline? Because she's actually doing really, really well. He drew this chart that actually just broke my heart. It basically said, Well, here's how children like Dottie's kind of cognitive abilities go you know, you start off and all children's cognitive abilities are low to begin with, and most children's will go like this in a sort of diagonal line across the chart, and Dotties will appear to track it at first, but then we'll just get further and further and further away from what a normal child would achieve. And I just thought, oh, okay, well, that's that then.

Lauren Fenton 20:06

Do you need somebody to draw that. Like, even if statistically some of that was like true.

Caroline MacPake 20:16

Yeah, I just don't understand it - it really felt like he was dashing every hope. Every time I said something, that could be hopeful. Yeah. It was like he was kind of squishing it down and saying, no, no, no, you need to manage your expectations.

Lauren Fenton  20:27

How did you react in the room? Did you - was that another?

Caroline MacPake  20:30

No, it was one of those situations where you feel overwhelmed. And especially in front of like an eminent geneticist who clearly is very, very intelligent, and knows his stuff. I kind of I did you know, you have the those sort of fight or flight responses. I didn't have a fight response. In that moment. I just had this kind of, like, overwhelm where I didn't say anything. I wish my husband and I - he actually sent Matt out of the room at one point with Dottie and Matt afterwards said 'I wish I told him to fuck off when he told me to leave the room', because that's when he did the chart thing. But we just blindly followed what this doctor . . .

Rina Teslica  21:10

. . like intimidation. Yeah. The minute that they have that consultant, Dr. thing, yeah, you kind of have to sit in a corner and listen, yeah, which I think now that we've been in this world for much longer, we know how to advocate for our children much, much better. And I feel so sad for myself and for you in those early stages, because you just don't know how to react in those know, awful beginnings.

Caroline MacPake  21:37

I mean, he said the most bizarre things. He said - she was two - And he said, 'You got to think about contraception for her'. And he said something like, I think this is just about verbatim, 'these people can reproduce. You know, if she has a child, it's got a 50% chance of having this syndrome'. And I was just completely, like it was, that didn't sink in until after I'd left the room. After I left room. I was really angry - I wanted to write a complaint about him which I never did, because I don't think he actually intended for it to be offensive or upsetting. But, you know, he was trying to manage expectations. But yeah, I just the way that those sorts of medical professionals can communicate, you know? Yeah. He also said to Matt and me, 'Well, you should be prepared for this to impact your relationship as well, because most parents of children with disabilities this severe, will end up getting divorced'.  Well, thank you very much for your therapy

Lauren Fenton  22:38

Do you feel like they must have a lot going on in their own life? like, Mr. doom and gloom. I mean, Jesus Christ.

Caroline MacPake  22:44

It was literally like, come to me and I will write off your entire life. Yeah. So so yeah. And I think that did I mean, you know, that the whole combined experience, obviously affected me really severely. And I remember lying in bed thinking, Well, that's it, my life's over. I just wanted to change how things were going for us and what what I felt had happened to us, you know, nothing had happened to us - Dottie was born with this condition, right? It happened at conception. So it's not like all of a sudden aged two something happened to us. And I just remember feeling so bitter and resentful of other people thinking about my family and about my friends, people that I love, thinking 'fuck you' to all of them, like, how dare you, you know, go around in your wonderful privileged life having not having to even think about what this feels like. And you've got children that are healthy, like, how can you know you don't appreciate that you don't understand what it's like for me and what we're going through right now. And just feeling really kind of ugly about the whole thing. And then feeling shame for feeling that way.

Rina Teslica  24:01

Which is perfectly normal. Yeah, I felt the exact way. And I told my friends, I was like, half of my friends had children. And the other half were Single Pringles. So I was in the middle. And I said to my friends who have kids, I don't want to know about your children. I don't want to see you. I don't want to see them. Leave me the fuck alone, because I cannot handle it. And they respected my wishes for a good like two years. I just couldn't handle seeing even to this day, like I had a blip when Lua was last in hospital where I was like, I fucking cannot stand seeing kids that don't have appendages right now. It's just too much because of what we were going through with Lua. I think that's just such a normal reaction to have when you're going through something so shit. Yeah.

Caroline MacPake  24:45

It's not just - I don't want this for my child. I don't want this I want it to go away. I wish I could change it. And as a parent, you want to do what you can to make your child's life happy. And you think that this is going to be something that's a barrier to their happiness. They're never going to be happy because of this. And yeah, I think the only thing that made me feel better was when I was actually with Dottie. I didn't think about that. I thought about her and she was happy. Yeah. And, you know, to this day, she gives the best cuddles that sometimes she'll slap you in the face afterwards. But sometimes she wants something in return. Like, so that that's what made me feel better. And I think a lot of what I was feeling or was also self pity. It wasn't just pity for her. It was pity for myself that my life had gone this way. And I just thought I was worried about what other people would think about me and our family. And you know, how they would judge us and maybe think that we weren't good enough because we had a child with a disability. And yeah,

Lauren Fenton  25:59

that's, that's cuz, yeah, it's your life up until that point, you've been socialised and lived in a world that has judged people . .

Caroline MacPake  26:09

Yeah,

Lauren Fenton  26:10

It's completely natural to feel like that totally, like, Thank you for sharing all of, those moments of real vulnerability, because I'm sure all of us have felt like that at times. And it's yeah, it's horrific. And it's but it's normal. Yeah, it's f**king normal. It's f**king normal to hate the world. Yeah. And I used to always have this thing of just wanting and I don't know why it was a cardboard box. But in my head, I remember saying it to Patrick as well. I was like this, like, image or, like, vision of me and my two children climbing into a cardboard box to hide away from the world. Yeah, and just going there quite a lot in those early days.

Caroline MacPake  26:49

Yeah, it's like protection. Yeah, you want everything else to go away and for your little bubble to exist. Exactly. Yeah,

Lauren Fenton  26:55

exactly.

Caroline MacPake  26:57

So yeah, I was kind of feeling pretty shitty, at that point in my life. And I had kind of met, established a dialogue with a few mums through the hypertonia Facebook group that also lived in London. And, you know, wasn't doing anything else my sad life. So decided I'll meet them for coffee, and met up with these women, and their amazing kids. And the immediate comfort I felt was how normal they were, these weren't pitiful people who lead sad lives and their children weren't pitiful, sad, human beings, you know, different kids have different disabilities. But they were cool. And I kind of felt like, Oh, these would be my friends, if I met them at work, or socially, like, these are normal people. And that's where I think, you know, the famous Whatsapp group that we've spoken about sort of took off. And I think, really, yeah, it kind of gave us all maybe a kind of insight into the fact that, you know, although our children have different things going on, there's a shared common experience at some of the things and the feelings and experiences that you go through. And it validates you feeling that way. And it's okay to feel that way. Because sometimes it's shitty. And the other thing is that having a group of like minded people, whether that's true, you know, and I've had similar experiences with the Mowat Wilson family, Facebook forums, there, there are different groups out there for depending if you've got a diagnosis, there's other organisations, if you don't have a diagnosis, there's places that you can turn to where people are going to be the same thing as you. And those people are normal people. And so I think having people who understand you that you can turn to is like having someone that's always in your corner, and give you confidence to push for what you need to do. They can tell you that you're not crazy. And yeah,

Lauren Fenton  29:12

I really hope that that's, I mean, that's the kind of raison d'etre of the f**king normal podcast, it's were we've come from, so yeah, we might be talking to all of you. You're all f**king normal. We're f**king normal. None of us are alone. We have got you.

Caroline MacPake  29:28

Exactly.  And I think, yeah, some of that, like I said, the shared experiences can uncover that actually some of the system's fucked up. It's not it's not what you are doing or not doing it's the system that's broken. And so it gives you some passion to fight against that and to do something about it or to change . .

Lauren Fenton  29:46

. . . even maybe to advocate

Caroline MacPake  29:48

Exactly. So yeah, so fast forward to today. Dotties five, she's doing so well. I feel at peace with where we are to be honest, because I know it’s just life. And it's gonna be okay. I get emotional saying it because I never thought that it would be okay. But it really is there's still, you know, some rough days some struggles. But you know, I know that I'll get her what she needs. She's happy. And life's pretty normal and pretty good

Rina Teslica 30:24

Aah music to my hears . .

Lauren Fenton  30:27

you're making us all cry . .I mean, yeah, thank you so much for giving the podcast your background . .

Caroline MacPake  30:33

. . yeah I get so emotional talking about the happy stuff.

Lauren Fenton  30:36

It's when somebody says 'are you, okay?’ And you say ‘don’t say that to me, I’m going to cry!’… But you've talked about a number of times, early on, when you have had to kind of advocate for you and Dottie, Not to force it, but coming back to it. But to come back to the topic of this episode. What does advocacy mean to you as a parent to Dottie?

Caroline MacPake  30:58

Well, I think as a parent, like, like any other parent, not necessarily a parent of a kid with a disability, you feel a responsibility. And your role is to get the best for your child, like every parent wants the best for their kids, of course they do. You want the best education, and you want them to have the best opportunities in life, you want them to reach their potential, basically, whatever that might be, you know, whether your child's going to be a neurosurgeon or an artist, or just be happy, that's what you want. And so, you know, as parents, you have lots of different roles, your a carer, a teacher, bank, taxi service, and we're all advocates for our kids, until hopefully, they get to a position where they can advocate for themselves, so they can be independent. I think as a parent of a child with additional needs, you don't know if often, if your child's going to reach that level of independence. In my case, my daughter literally can't speak for herself. So I have to speak for her. And I have to be the person that gets her what she needs. As you said in the intro, Lauren, the world really not been designed for disabled people. And so there are barriers everywhere. And so as a parent of a child with a disability, you start to see some of those barriers really early on in their life. So I think there's there's different types of advocacy, right, there’s advocating medically, as I was kind of talking about in terms of pushing for a diagnosis, or access to therapies or treatment, you can often be dismissed as a parent pushing for a diagnosis, or a treatment, and you have to advocate and push for what you feel your child needs. Sometimes you have a gut feel as to what they might need, you know, as a parent, or, as a mum, it's cliche about mum knows best, but really, you know, your child so much better than any medical professional, you know, they know what they know from studying hard for a medical degree, and reading medical journals and reading things that are written down but you know, your child, they don't know your child,

Lauren Fenton  33:08

thank you and your story, as you've described it, it was your gut. Yeah, okay. Sometimes the gut took you down on like, slightly different path. But your gut was on ultimately telling you, I need a diagnosis, I know that there's something more going on it is so so valuable to, to have that and to feel you can trust it, I think there must be a lot of people who don't have such a kind of positive outcome in terms of getting answers as you do.

Caroline MacPake  33:39

And it makes you think doesn't know doesn't, you know, like to say I'm a lawyer, so I am actually trained to argue to put my case forward and assimilate a bunch of information, and to critically assess it and to basically get an outcome. And I, you know, in that meeting with a geneticist, I froze up and I couldn't ask the questions that I felt I needed to ask and I took what he told me at face value, and you think, Okay, well, what about people who have culturally or otherwise personality wise, you know, I'm not the sort of person that likes confrontation, and will just take what is given to them at face value

Lauren Fenton  34:20

completely. It can also be kind of that educating yourself of what rights your child has. So you take it at face value, but maybe feel that they need something else. Yeah, but you don't realise that they have a right to something else that you you have a right to say no. To ask for a second opinion, or to challenge what school provision has been put in place for your kid. If any has been put in place. Yeah, it breaks my heart to think that there are so many people out there that aren't . .

Caroline MacPake  34:51

. . totally and yeah, I mean, when you're advocating for rights in in general education is a big one right for any parent ever. A SEN or disabled child, you know, oh my God, you could have a whole episode on EHCPs . . and on the battle . . . Yes. But you know, my daughter, So Dottie can't speak, but she can communicate, she's got a lot to say. And she wouldn't be able to survive in a mainstream education - mainstream as it stands today, because, you know, guess what the education system hasn't been set up or designed to include all children. And so Dottie can't speak and therefore be excluded from a whole big part of the curriculum. And what she needs is specialist support to access curriculum. So people that sign, you know, different provision around, you know, like technology to enable her to communicate, the system isn't built to offer that to a child, you have to fight for it, you have to, in most cases, go through a legal process in order to get it. And then I guess there's wider advocacy, there's advocating for those who, like, as we said, might find themselves in similar situations and find the system stacked against them. So you kind of want to help people to understand what they can do to help themselves and their children. And then maybe it is advocacy in a strict sense is probably more allyship. But like doing what you can to change wider attitudes in society and make the world a more accepting place for your child to grow up in be that, you know, attitudes of children in the playground or attitudes of, you know, culture in general. Yeah.

Rina Teslica  36:43

That was a that's a big one. Because, obviously, coming from an Eastern European background, like disability is such a taboo, like, there are still people who view disability as like, the worst thing in the world and will hide their children away, God forbid. But when Lua was born, I think my family struggled initially with the diagnosis, like just the word syndrome was like, oh, fuck, what is this kind of how could this happen? What is it de de de? And like, I started to blog about it. And I was very active on social media, because I had a big, not a big following, but like, maybe 500 followers on Instagram, but 80% were from Kosovo, and Albania. And so I would post a lot about my life with Lua just to show that this is normal. Yeah, it's my f**king normal. It's not a big deal. Well, then in the beginning, I was like, f**k me. I hate my life. Yeah. But over time, once I started to accept my reality, posting about it, and I had so many messages of support from other Albanians, just saying, wow, like, wow, this is amazing talking about. And so, from afar, you're changing perspective on what disability is, yeah, your making it less. not attainable, but less out of reach and out of touch with life . .  Yeah. Which is something I'm very pretty proud of myself. I know, it sounds so silly, but like, changing how you view things . .

Caroline MacPake  38:12

. . and celebrating things. So your, your, your Instagram celebrates Lua, right, her sassiness, you know how amazing outfits. But, you know, it shows that like, this is my child and I'm proud of her. And you know, that that is powerful in itself, for other people to see that as you say, in some societies, I think, you know, even in the UK, I think older generations, I'm not sure that all of my family has accepted that Dottie has a disability. It's not spoken about throughout my entire family, it's just something that, you know, - just leave that to one side - drives me fucking mad, but you kind of go okay, everyone's on a journey of acceptance, and you can't necessarily immediately bring someone to where you are. Yeah - drives me crazy.

Rina Teslica  39:00

So Lua's in Kosovo right now. And I was talking to my mum and dad, because I'm very excited for my grandmother, my grandfather to meet Lua, they're 90 they are from a completely different generation. And my dad was laughing. He was like, yeah, be prepared. And I'm not even offended because I understand how they view the world. They are so far removed from where we are now to where or how they were brought up. So I'm conscious of the fact that they will view her as different and potentially kind of, you know, odd and be a bit difficult maybe, although I'm not there to see at the moment. I'm conscious that that that is still something is a fight to this day.

Caroline MacPake  39:50

I bet though they'll spend half an hour with her and they will just fall in love with her and she will just be Lua right? Yeah.

Rina Teslica 39:58

Her new thing is literally be taking their hand and kissing and asking them to kiss her cheek. So I know she will be like working her magic - it's nuts.

Lauren Fenton  40:07

Ah charm. So you know, getting back to your professional capacity as a lawyer and having those skills to reference. And you refer back to the geneticist moment as being a time when you froze since then, and since her diagnosis, what's been the most challenging time for you when you've had to wear that advocacy hat?

Caroline MacPake  40:28

So definitely the process to get her EHCP. So, yes, I'm a solicitor, I went into law, because I've always been an argumentative, argumentative, difficult person. I'm a cynic who, you know, won't take at face value, what someone tells me, You know, I want to make my own judgement about something. And I kind of heard through the grapevine on these different forums these EHCPs, or education, health care - shoud we explain what those are? . .

Lauren Fenton  40:59

yeah, we I mean, we've mentioned EHCP's in other episodes, but for anyone listening, afresh to this episode. In the UK, it's basically a a legal document that gives your child the right to education. Yeah, essentially, and specifies what their needs are in an educational setting, and how that will be provided for

Caroline MacPake  41:22

Yeah, it's basically a contract with your local authority to say, this is what you have to provide for my child. And so you need that document in order to access certain types of specialist provision. And I knew that Dottie had a diagnosed condition where most children don't end up talking at all. So I thought it's an open and shut case. You know, I was really casual about it. I've just downloaded a form off my local authority website, filled it out, sent it off, I thought, okay, great. They'll send it my back. And we'll have an education healthcare plan, and I'll be able to get her into the school that that I feel that she should be at - Yeah - um Wrong.

Lauren Fenton  42:02

If only. If only it worked like that.

Caroline MacPake  42:07

Yeah, I was completely bowled over when I got a response, saying we're not going to assess your child because we don't think there's even a chance that she will need a specialist provision. And so it was at that point, I started getting my legal advice. And I realised that what I'd done is not advocate for her in a legal or professional sense. I've advocated for sort of as a mum. So in the bits on the form that say, what are her strengths? I'd gone to town and I'd written, she's highly engaged socially, and on the challenges so Oh, yeah, I think she can't speak. Because I was proud of her. And I was proud of what she's achieved so far. And I wanted to shout about that and tell someone about it. But yeah, that is the wrong approach.

Lauren Fenton  42:56

So natural.  And yet they tell you I heard this advice a few times. I'm sure you have as well. You've got to write it as they are on their worst days.

Caroline MacPake  43:07

And it's true, because otherwise, you're giving them an out? Yeah, basically, what I discovered completely shocked me, which is an absolutely fundamentally broken, f**ked up system that is based on budgets and budgets alone. No one cares about the child at the heart of it, no one cares about giving that child an educational provision, all they care about is allocation of budget. And these people were basically tasked at the local authority to find a reason not to give you that budget. That is shown in the fact that 95% of cases that go to appeal, find in favour of the family. So 5% of those cases, the local authorities acted correctly, 95% of them, and those are the ones that went to appeal those so if you go to appeal, you have to pay a fortune in legal fees, or spend a lot of time and effort yourself to represent yourself. So only small number of cases will go to appeal. So there will be 1000s of children out there who are not getting support to access education. That's their fundamental human right. Makes me so angry and as a lawyer, you know, and a mum who would run through brick walls to get my kid what she needs. I still had to pay a professional to strategize to get to what we need to do. We got what we needed. We got the EHCP she's at an amazing school. Now when she's absolutely thriving. She's just finished her first year there and oh my god, it's having the most miraculous impact on her. I dread to think what would happen if she wasn't there?

Lauren Fenton  44:46

Yeah. And that's the case as you say that 1000s of children I mean, it just breaks my heart. And not to extrapolate too far but that's in the UK as well. So there's thousands of children In the UK that aren't getting it - other countries around the world there aren't the systems in - however f**ked our system - there aren’t even those systems or support in place. Worldwide how many children… it doesn't bear thinking about

Caroline MacPake  45:16

as a lawyer, I like to think I've kind of got this barometer for what's right and wrong, and you know what's equitable, and that that whole thing just made me sick to my stomach thinking, I basically paid my way into getting what she needs. Because I'm in a privileged position, I can do that. I felt so guilty about the fact that, okay, well, I'll get Dottie what she needs. But what about all of these other children? And, um, what what can I do? What can I do to help those families because this is just wrong.

Lauren Fenton  45:46

And so you are doing stuff aren't you?

Rina Teslica  45:49

. .  tell us about that?

Caroline MacPake  45:50

So look, I started to do what I could to basically take what I've learned from the experience that I had to help other people. So if I saw someone on a Facebook group or a forum saying, I'm struggling with, I've been rejected for an assessment for my child, I would DM them and say, like, tell me all about it. And I'll try and help you. And so I think there were three or four people actually, we got successful assessments for and they got their EHCPs. And it was great. But it was just I felt like it was a real drop in the ocean. And I was like, Why, like, I actually thought about going through a process at work where company on the workforce was merging with another one, and I thought I might get made redundant. And I did actually think maybe I should quit work and just do this. But then I realised that I won't be able to pay my bills or my mortgage. So maybe, you know, Exactly, but I wanted to do something. And I discovered through my network of legal contacts that actually, some people that I had known throughout my career had set up a charity. So throughout lockdown, they discovered the same thing. Someone that worked through with them went through the process of getting the EHCP had also been horrified by how fundamentally wrong the system was. And unlike me, who was struggling to find a way to help, they'd gone ahead and set up this amazing charity. So Support SEN Kids is a charity that basically aims to use legal technology to provide access to the law on a free basis to parents to enable them to advocate advocate for their children to try and, you know, help them save themselves from going down a very expensive legal route to basically democratise the information they need to advocate for their child's education.

Lauren Fenton  47:41

That's amazing, we'll put the details in the show notes as well.

Caroline MacPake  47:45

Yeah. And I think we've spoken about community and the  idea of Support SEN Kids is that it creates a community. So if you go through the process of an EHCP join the website, ask a question, you'll get a question you'll you'll get people who will answer your question for us. It's a community of people who will help each other through shared experiences. There's also access to some lawyers online that can help. There obviously can't advise on specific cases, but they can help answer questions, again, opens up with a guide on SEN law. We're producing more guides on things like disability discrimination, how to write a will, or useful things that can help a parent to put themselves in the best position to advocate. 

Rina Teslica 48:29

That sounds absolutely amazing. I'm so proud of you.

Lauren Fenton  48:31

Yeah. Wow. I don't know where you get your time and the energy to do all the things you do. Yeah,

Caroline MacPake  48:37

Yeah I feel very guilty, because I don't spend as much time as I really ought to . .

Lauren Fenton  48:41

No - And there's only one Caroline, you can't replicate yourself. Do you feel like has it changed has has your ability to advocate change? Do you think as she's got older, there's been this battle for the EHCP that you described? And obviously, you're now doing all that amazing work as an allyship and helping other people to advocate for their children. But do you feel like you've got to a place now where you really understand how to navigate the system and challenge . . . . .your bullshitometer? Yeah, there you go. Rina has a bullshitometer. We all need a bit of Rina's bullshitometer in our lives,

Caroline MacPake  49:26

I think the bullshitometer is a really great way of looking at it because I think you can as an advocate, and as someone who passionately obviously believes in getting your kid what you want, you're very emotionally attached to it. And sometimes you can be at bit too emotional and you can go through having all of these experiences of having to f**king fight. You know, like people joke about mama bear kind of running through walls, but you can get into a place where everything feels like a battle and So yeah, you go in as attack is the best form of defence and every person you meet be they medical professionals or people at school. You know, whoever you go in there with this kind of aggressive mentality of like, F**k you, I'm gonna get what I need out of this. And actually, that's, that's not always the best approach, I think, you know, sometimes that's what you have to do. But that's exhausting. And having that mentality is exhausting feeling like, feeling like you're in a constant battle is exhausting. And I do think it is about picking your battles.

Lauren Fenton  50:36

Absolutely. And you getting the right outcome isn't always going to be by going down that route, fight, fight fight, I find certainly, you know, certain medical settings, certainly when you're trying to get legal, you know, EHCP type support, it's important to fight and have your game face on. But in education, I found examples where it's been much more subtle than that. So Bea is really happy at school. And she's doing really well. But I've found time and again, I've had to advocate in a slightly more subtle way, in terms of like raising their expectations for her. Around reading, for example, a bit like Dottie Bea just didn't speak much at all, until very recently, where she's able to speak a bit more certainly in in the home. But she has huge communication challenges. And I felt like with that, I didn't see that as a barrier to her learning to read if she can do it. And she wants to do it, I'm going to do everything in my power to help her to read. And she loves books. And she always was just like sitting pretending to read books like following them with her finger the words and stuff. And so that's something where at school, I have been a pain in the backside constantly trying to encourage different ways of exploring it and doing it because I just feel like I'm not going to sit back and wait for her to be able to speak more words until she reads because that could be a long time. And every kid has the right to to try and access literacy. So yeah, I feel like it's about setting setting a higher expectation for your child sometimes.

Caroline MacPake  52:31

So you do that like at school Dottie school is awesome. The staff there are just - I love them all so much - I cried at her annual review just thanking them all. They see her as an individual, they don't see her as having a specific syndrome or condition they see her they really really see her. But likewise, you know, so she's in the care of - she's in the care of the people at school. You want to be respectful. Yeah, you don't want to piss them off. But you you want them to up their game sometimes . .

Lauren Fenton  53:04

it's the nudge isn't it? Yeah, it's like, and I do share videos of things that she's done at home that I think are amazing. Yeah, to kind of say 'look like she can do this'. Yeah, I mean, it might be a bit of a control freak in me as well, I'm not a teacher, but

Caroline MacPake  53:22

you can say that about anything. I'm not a doctor, but you know, you, you know Bea, and you know, in your heart of hearts, what she's capable of, and you know that she's got great potential. Yeah. So, yeah, there's nothing wrong with keeping people on their toes.

~music “wake me up loud as clouds, all my love for you”~

Lauren Fenton  53:48

So in terms of other assumptions of other people that you've had to challenge, Caroline, has there been other examples where you've had to go in and, and question or challenge the assumptions people have made?

Caroline MacPake  54:03

Yeah, well, I think generally, a big learning for me have, you know, as as a parent of a disabled child is being able to have a reason to have insight into the disabled community generally. And through my work. So my position in my professional life, as I think Rina said in the introduction, I'm a sponsor of our Disability Network. And through that, I've just had the opportunity really to have some really, really fantastic conversations and to learn myself from some brilliant disability activists from disabled adults in the workplace. And it was through that, that I first learned about the social model of disability. And when I was told about the social model, that was a real lightbulb moment for me because it shone a light And made me realise myself in terms of challenging my own assumptions explained to me entirely why I've had such a difficult time in accepting Dotties diagnosis in the first place.

Lauren Fenton  55:13

Yeah, is it worth just… I'm sure that most listeners will understand what the social model of disability is. But if you could just in like, a sentence . .

Caroline MacPake  55:22

I'll do my best to explain in a so,

Lauren Fenton  55:24

well, the world is totally f**ked up, basically . . .

Caroline MacPake  55:25

. . .I think totally that is the best way - That's in summary, absolutely. So the social model basically teaches you that a disabled person isn't disabled by their condition or their impairment be that you know, something physically or cognitively or otherwise, they're disabled by the societal view, and all of the barriers that exist in society. So the stigma around disabled people that this that, you know, disability is a dirty word, or the disabled people are somehow broken, or they need to be fixed. So if you, you know, classic example, if you're in a wheelchair, then you need to be fixed, you need to be enabled to walk not that the society needs to change so that there's access for you. And so that, you know, you're able to do travel around and do what you need to do through the tool of your wheelchair, the wheelchair is what enables you to access but you know, the, the world, as we've said, is not built for disabled people, it's built for a certain type of person, and that person is genuinely an able bodied person. So the person wouldn't in that case, wouldn't be disabled by the fact that they need a wheelchair to get around. They're disabled by the fact that there's no access, and that society views them in a certain way, and the opportunities are not available to them. And so it's that that made me realise that, you know, Dottie doesn't need to be pitied. In fact, Dottie doesn't need to be changed at all the world needs to change and attitudes need to change and society needs to change and my attitude to disabled people needed to change. So, you know, just like I was frustrated, that that geneticist didn't see her he saw her just as a label or a diagnosis and not as Dottie. I remember really clearly, our first appointment with our community, paediatrician who was amazing after having seen that, that geneticist, and I was in pieces, and she said to me, I'm not treating a syndrome. I'm treating Dottie, and I was like, I love you.

Lauren Fenton  57:35

So why can't more people say things like that?

Caroline MacPake  57:39

 Exactly. And that, in itself made me realise, but that is her treating Dottie, you know, through, not a medical medical eyes model of disability, but seeing the patient in front of her. So yeah, so that. So seeing that social model of disability, having those light bulb moments through these conversations with wonderful people, has changed my view of disability. And it's made me really passionate about changing attitudes in the workplace, and in society as a whole. As a result, you know, we all want to make the world a better place for our children. And I think as a parent of a disabled kid, do you want to change those attitudes so that your child can grow up in a better place?

Rina Teslica  58:23

That leads us really nicely into how you're teaching Dottie to advocate for herself? Because I think that's incredibly important.

Caroline MacPake  58:31

It Yeah, it is important. I don't have all of the answers on that at all. I wish I did it. So a really difficult question. It's one that I'm sure you're both conscious for Bea and for Lua as well, because, you know, it's basic good parenting that you want to give your child everything that they need to be independent, but when your child is disabled, you will your automatic response is to want to protect them from the world around them. And so it's hard to try and enable them to be able to do that for themselves. Also, because in some cases, you don't know how capable. In Dottie’s case, I don't know how capable she's going to be in the future to advocate for herself. I don't know if she's going to be able to talk or not, no one's going to be able to give me the answer on that time will tell. I know that she has a lot of attitude. You know, she she knows what she wants. And so I've got to enable her to be able to communicate that to people. And there's so many contradictions as well when you're trying to empower your child from a medical perspective. You know, how do you teach your child about consent and being able to and then being empowered to say no to an unwanted physical interaction, when, you know, the next day you might have to hold them down in order to you know, be cannulised to get to receive you know, critical medical treatment? Yeah. Dottie was in hospital and Um, a couple of months ago, I had to, I think, physically restrain her and hold her down. I think it was 18 times in four days I counted. Because she kept popping her cannulas. And she was screaming at me mummy, no ouchy mummy, no, please. And it breaks your heart. But you know, you have to do it. So you do that, because you're advocating that's the best thing for your child in that moment. But then the next moment, you're saying it's okay to tell people No when they when they want to touch you and you don't want them to.

Rina Teslica  1:00:31

I've never thought of that that way, like, yeah.

Lauren Fenton  1:00:36

So yeah, similarly, Bea's been going through a particularly tricky phase in the summer holidays, I think lack of routine is probably playing into she's a bit tired. I don't know, I don't know what's going on. But today to get her out the house, I just in the end, gave up and picked up her shoes, picked up Bea and like, pretty much like firemen lifted her to the car. Which wasn't great - But you know that exactly what you just, I mean, it's obviously less about medical needs. So, you know, harder to explain or justify, but I just needed to go because we were going to be really late. And I tried everything else. And it's really hard, I think as well, when they can be quite. So teaching them to advocate for themselves. I think him now in like sort of, I guess less extreme examples, but maybe when they're playing with other children, I find that really hard as well, because you can't really Bea can be quite passive. And so then you try and get involved to try and let you know, get other children to include her. But then that's you know, you don't want to be like forcing other children to play with your child when it's not easy to communicate with them or to Yeah, for it to make it work. Olivia is very good at that with Bea Olivia, as the older sisters really good at it if she's playing with like cousins or friends or whatever to include her, but I don't know how much longer that'll last given you know . .

Caroline MacPake  1:02:14

I think that's this the same for typical kids isn't typical, you know, in the same like both the consent thing, you know, I had to restrain Dottie’s brother flying in the plane because he will put his seatbelt on. Also, as you're talking the one thing that really struck me also on our holiday recently is that, yeah, I would normally be really protective about Dottie playing with other people. I'd want to know what they're saying to her. They're asking her questions about why she can't talk to her. And I think learning from me on holiday, she made friends with these two kids in the pool. Through no interaction with me, this little girl came over to her and I heard her say to her “hello friend”. And they took up this friendship is these two girls were lovely. One was six, and one was three two sisters. And Dottie had this like this amazing friendship with them over the course of about three days, they turned out to be staying in the room next to us. And were passing notes to each other under the door. I was worried that they would be asking her or me why she couldn't talk or why she a bit different. But no one asked me that question. The other parents didn't ask me that question. They were just totally accepting, you know, let her get on with it. And it was lovely. So you know, she's she's okay

Lauren Fenton  1:03:33

That’s amazing. Yeah. And actually, maybe as well as the lesson, I think it's very easy, because you spend so long fighting on behalf of the child and for what your child needs and advocating all over the shop. Sometimes you need to let go a little bit and just let them find their way.

Caroline MacPake  1:03:51

Yeah, yeah, absolutely. I think, you know, the thing that, you know, we're just having a lovely, uplifting part of the conversation. I'm about to bring it down to earth for the masses with a massive thump. But one of the massive fears that you have and that I'm sure any parent who's listening who has a disabled child is what what happens when we're not here anymore. You know, how do we make sure that we've provided for them after we've gotten in like, any parent when I'm laying awake at night, many times crying my eyes out thinking, who's gonna look after her what's going to happen? after we're gone? Every time I have like the slightest health issue. I'm thinking, Oh, my God, what if I die and who's going to look after? And I was having a conversation with Matt, my husband and Dot heard once again managed, so you will say no to her, and she will find a way somehow of getting what it is that you've refused her. She is a world class negotiator. You're going to a shop and you say to her, you can have one thing and you always leave with at least two things. And she'd managed to get herself something that we both said no to her and I just looked at Matt I said she's gonna be, she's gonna be okay. Isn't she this kid's got it sorted. She knows how to manipulate situations to her advantage. Yeah, maybe she doesn't need to be able to talk to do that. She's She's, I think she's gonna be okay. So yeah, maybe is a huge part of letting go. Right. But that's a hard thing to do.

Lauren Fenton  1:05:21

Yeah. And think it will be for a lot longer. Yeah, forever perhaps. Yeah. Is there anything else that you wanted to say?

Caroline MacPake  1:05:29

Just one other thing on, as we're thinking about what happens after we've gone? I do hope that I mean, Dottie, I'd like I said, before, you know, we had, we had another child because I wanted Dottie to have a sibling, Dottie's also got some amazing cousins who she adores, I really hope fundamentally, that they learn that growing up with a disabled cousin, or sister is, you know, they treat it as something that's totally normal. And they don't even have to think about it. They don't even have to consider the social model, because they just are accepting of not just disability in all its forms, but of any difference. And yeah, I guess that's just the long, longest hope that in the future, maybe there'll be less of a need to advocate because attitudes and people will have changed. And hopefully, they are changing now.

Lauren Fenton  1:06:22

Yeah. But until then, like, I would love you on my team. Lucky Dottie has an amazing person fighting for her, so

Rina Teslica  1:06:30

Amen.

Caroline MacPake  1:06:32

Thank you. Wow. You know, all of our kids are, are lucky to have some amazing women. And we're lucky to have each other so.

Lauren Fenton  1:06:41

Yay! Well, thank you. And as we've started to do on the podcast more recently, as well, we will ask you to close with telling us what your F**king Normal is.

Caroline MacPake  1:06:54

So my f**king normal because it seems to happen every morning is being woken up at 3am to a tap, tap, tap on my shoulder. And a little voice goes, Mummy. And I immediately go, Oh, my God, it's 3am. But then, very quickly say no, Caroline, you didn't think you'd ever hear her say that. So you know, deal with it. So that's my F**king Normal.

Lauren Fenton  1:07:20

Just I love that. Lots of love to Dottie and to Roo.

Caroline MacPake  1:07:28

And thank you, Caroline. So, so much. It was a blast having you on the Fucking Normal podcast. Thank you so much for having me.

~background music plays~

Lauren Fenton  1:07:38

Thank you so much for listening to the fucking normal podcast. We love making this podcast. Yes, we do. We are part of a much bigger team, almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support to parents and carers who share our experiences.

Rina Teslica  1:07:59

So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at fucking normal podcast.com That's fkingnormalpodcast.com. You can join us on Facebook and on Instagram at fucking normal underscore podcast. That's f k ing normal underscore podcast. You can get all the links and more information in the show notes below.

Lauren Fenton  1:08:23

So thanks so much for listening all the way to the end. We'll see you next time.

~Music continues “wake me up, loud as clouds, all my love for you”

Episode 4: Extreme juggling

~music - “Wake me up, loud as clouds.. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Lauren Fenton  00:16

This is the f**king normal podcast, the cheers, tears and Friday night beers of parenting disabled children.

Rina Teslica  0:24  

I'm Rina,

Lauren Fenton  0:25  

and I'm Lauren.

Rina Teslica  0:26  

And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories, and chat about the things that we've learned and are still learning.

Lauren Fenton  0:40  

Prepare to sometimes laugh, sometimes cry, but hopefully leave with a shot of optimism in your arm. And don't forget we are talking from a parent's perspective. We would never presume to talk on behalf of a disabled child or adult. So expect bad language, and quite frankly, some brutal honesty.

Rina Teslica  0:59  

Because really, what the f**k is normal anyway?

Rina Teslica  1:15  

Hello, and welcome to another episode of the f**king normal Podcast. I'm Rina, 

Lauren Fenton  1:21  

and I'm Lauren.

Rina Teslica  1:22  

...And today's episode is all about extreme juggling. I think that's a much better descriptor than "finding a work life balance". Of course, all parents struggled to juggle work and raising a child. But raising a child with disabilities has a whole load of added pressure. You've got to juggle finding suitable childcare, organising hospital visits and therapies, which let's face it are often right in the middle of the day. And let's not get into all the unpaid care work a parent is often doing outside of their paid job. It brings it home just how difficult it is when you're looking at the stats. For example, a report showed that a third of parents of disabled children are not working, and of those 40% have been out of work for more than five years. In comparison, only 17% of people with dependents i.e. non-disabled and disabled children are not working. Another survey of 900 parents found that two-thirds of parents declined a promotion, or accepted a demotion just to balance care and work commitments. And finally, and most shocking of all, is the DWP's findings that it costs on average three times as much to raise a child with a disability as it does a child without any special needs.

Before we introduce our guest, I just want to flag that today’s episode contains quite a lot of acronyms relating to education and hospitals as well as terminology around different seizures and seizure types. Though no doubt familiar to some listeners, we have put a little glossary in the show notes to clarify these where we haven’t done so sufficiently during the course of the conversation. Enjoy the episode. 

Lauren Fenton  2:55  

And our guest today is our friend, the lovely Helen Gamble-Shields who I'm delighted has agreed to join us on the podcast. Originally from Ireland, Helen is mum to six year old Finn, who has a rare genetic condition called Dravet Syndrome - it is a potentially life-limiting form of epilepsy. And from the age of four months, Finn has had complex seizures of varying lengths which are difficult to manage with medication, and all too often resulted in trips to A&E. He will not grow out of the seizures. This is a life-long condition. Dravet Syndrome often brings with it other challenges from physical to developmental and behavioural and I understand that Finn recently also had a diagnosis of autism. Yet he is the most beautiful and affectionate boy and I can attest to how gorgeous and brilliant his cuddles are, having been lucky enough to have some. They live in North London with Finn's dad and Helen's husband Marcus. Helen is also - in the context of this topic it is kind of important to mention - Helen is also an architect. As is Marcus, I believe. And her and Marcus both work full-time. Helen returned to work after a period of maternity, and obviously has ridden the roller coaster of extreme juggling juggling since then. So I'm really grateful that she's agreed to tell us about that. Welcome to the podcast, Helen. 

Helen Gamble-Shields  4:18

Hello guys. Thank you. It's a really lovely introduction. I'm going to start mind you and tell you that Marcus is a landscape architect and he takes it very, very seriously that he's a landscape architect. But yeah, thank you so much is no no problem he'll be he'll be he'll be absolutely fine now that we've corrected it.

Lauren Fenton  4:38  

I mean, that's pretty close. Most people's husbands and partners I like, I dont have a fcking clue!

Helen Gamble-Shields  4:41  

We are definitely in the same business. Put it like that we have we actually do some projects together. So yeah

Lauren Fenton  4:49

It's got the words architect in it. 

Rina Teslica  4:50  

You do the house and then he does the outside.

Lauren Fenton  4:53  

How are you?

Helen Gamble-Sheilds  4:54

Me? I'm I'm pretty good today. Yeah, I've been. I'm actually doing really well this week. Last week was a little bit difficult because Finn had a whole bunch of seizures around the middle of the week. And I was trying to get go to work get finish school while he just wasn't really that well. And then also my parents came at the end of last week for the weekend, which was actually very good. However, yeah, it just adds another dimension I suppose to the week that you've just you've just had but ya know, this week, a little bit calmer. My folks left yesterday Finns in really good form and I think he's just gone to sleep so

Rina Teslica  5:26  

Perfect, well that leads quite nicely, Helen, why don't you tell us a little bit about kind of you and your career and pre babies? What was your life like pre-babies?

Helen Gamble-Shields  5:37  

pre pre babies? Um, it's I've been an architect, I suppose 20, nearly 20 years. So yeah, I know exactly. That's how old I am. 

Rina Teslica  5:47  

You do not look your age. 

Helen Gamble-Shields  5:48  

Thank you very much, Rina. Thank you. I moved to London about 18 years ago. So I've been working for the same company since then. So I guess I'm pretty, I'm pretty established in that company. So I'd be in the kind of the higher level management. I run most of my own projects and have teams that work with me. So I guess in terms of architecture, I'm doing okay. But I actually just really love the profession. I just really love, I love the challenges. I love the challenges of the different projects and seeing the you know, the work from inception to completion and the little arguments with the contractors as you go along, and that kind of thing. So, yeah, I had fun in my mid to late 30s. So I'd gone through a career up until that point, and I think my career was, and is probably still quite important for me. But obviously, having a child is a massive change, and then having the shock, and the, you know, the massive change to your life that having a child with quite severe disabilities and complex condition, that is a bit of a juggernaut into how you manage your life and how you manage your work. And I guess it totally changes your priorities as well, right? Yeah, when he was born, no, there was no real signs of anything until he was four months. And then he had a seizure. It was a long complex seizure. And that was initially a big shock. The seizures kept coming, you know, they kept coming. I'm not saying they, you know, you had one that month, then you had one so many weeks ago. And in between that point, I think, actually, I realise I'm quite an optimistic person. People said to me, it's, you know, children grow out of it, it could be a one-off. And that's what that was the line, I just, I took that I went, alright, it's a one-off. And then when it kept on, you know, they kept they came again, maybe about three weeks later, another one, and then you know, they started to develop like that. And then you suddenly realise this was a condition, a long term, potentially a long term condition. And like yourself, like both of you, he does have a genetic condition, it did need to be diagnosed. However, with his Dravet Syndrome, there's only certain types of epilepsy, I guess, that come sporadically. And that's quite common for Dravet children to start to have a seizure at that point. And they also have long seizures. So that first seizure within was over 20 minutes long. And people said, oh, maybe it's a febrile seizure, well, you don't get febrile, apparently, you don't really get febrile seizures below six months. And then obviously, obviously, people said, you know, slightly as he'll grow out of it, and things like that, but actually, he suddenly followed, he was following a pattern. He also then, he had tonic clonics, but they'd switch from side to side. And there was various different indicators that suggested it was Dravet Syndrome. However, obviously, they don't give you that diagnosis until they have that genetic confirmation..

Rina Teslica  8:59  

Which took how long?

Helen Gamble-Shields  9:02 

It took 16 weeks, nearly actually, but I which point we have been in so many hospitals been admitted to the Royal Free so many times, we also had, he'd had status seizures several times, as well. So that's when he  a status seizure means you know, the seizure is a tonic clonic goes on for more than 30 minutes. 30 minutes is the general the cut-off point. So it goes on for longer than 30 minutes, at which point, it can start to affect the rest of the organs in the in the body, obviously. So you can get you know, things start to slow down. Breathing can be can, you know, can become subdued and things like that. And we were really lucky with Finn actually, and that he was actually quite robust because he actually generally dealt with the breathing OK. Whereas a lot of other children's Dravet, they actually, you know, they have to have oxygen immediately. Whereas, we didn't quite have to get to that, but obviously, you know, it was always you had to run the ambulance and things like that, and then you had to get to resus. But yeah, the sort of status seizures and then yeah, he also got intubated once as well. So that .. we had to go to the we had to go to the Evelina..we got transferred. You don't realise things like there's no paediatric intensive care unit in some hospitals, right. You don't realise until..

Lauren Fenton  10:28  

Until you need it. 

Helen Gamble-Shields  10:29

We were in intensive care for quite a few days with him at that point, and then we got transferred to the neurology ward. And yeah, I remember overhearing this paediatric, she was a professor- the consultant. She literally said, yes it's a strong suspicion that he has Dravet syndrome, yet, we didn't have a diagnosis. And I kind of thought, you bitch.

Lauren Fenton  10:52  

Yeah, you didn't want to hear that.

Helen Gamble-Shields  10:53  

I didn't, I didn't need I didn't need to hear that, at that particular point in time, and obviously, 

Lauren Fenton  10:57  

How old was Finn at this point?

Helen Gamble-Shields 10:58  

Finn was probably about six months old when he had his first kind of incubation episode. And then he hadn't, he was, he had to go to intensive care, four times through incubation. But you kind of became bit used to hanging out with the anaesthetists, you know, trying to decide whether or not he needed to be intubated and needed to be transferred, or whether the seizure was going to stop, he definitely had a , you know, gold membership card at the Royal Free about, you know, at that point, and the ambulances, and paramedics, you know, that was all, we just, we would have, like paramedic parties in our living room, you know, several nights a week or you know, where you just get - you get these paramedic specialists would arrive, then you'd get the maybe get the the rapid response vehicle would have arrived, and then you get the actual full on ambulance. I know exactly. You know, we this is something I think that a lot of parents that have children that have very complex conditions like this, you know, they they experience and

Lauren Fenton  12.02  

I mean..not everybody and I think don't dismiss it, and don't say that it's something you get used to, but clearly, it's not something that you should ever get used to. And you're the emotion in your voice...going back there is clear..yeah

Helen Gamble-Shields  12:13  

It was really, it was really, really tough. Yeah. Like, the ICU is just somewhere where you don't want to be, you know, because there's just very, very sick children. And there's a lot of people that are very, very emotional, you know, as you would expect. It's just one of those things, you suddenly find yourself going through, right? 

Rina Teslica  12:34  

And you don't think you just go

Helen Gamble-Shields  12:36  

go just go right.

Lauren Fenton  12:36  

You’re just in Survival Mode? Yeah,

Helen Gamble-Shields  12:37  

you're just in survival mode, aren't you just friggin here I am. You're like standing in a corridor watching this consultant, like, you know, he looks literally drained from what he's, you know, just had to treat your child and you're just like f**ck, well, it's just, you know, what is actually happening, you know, and,

Rina Teslica  12:56  

but the way that you describe it says so much about your personality and just your positivity. And I think that's probably what got you through it and got you to a point where you were like, Okay, this is just how it's gonna happen right now. And I need to get on with it

Helen Gamble-Shields 13:10  

Yeah, you just had, you've got this tiny little baby, and you just have to get on with it right? Yeah, you just got to keep going. Keep on truckin or whatever, whatever the f**ck you say you right, you just got to, you got to keep...keep on going. Because, like, he's going to come out at that seizure. And he's just going to be this little baby that wants fed and wants to have he just wants Mummy, he wants his daddy, you know, he wants to go for a walk and, you know, do do whatever else, you know, but yeah, it was it was just really constant. You possibly don't need to read the words "catastrophic" or "life-limiting" or "plateauing developmentally", or, you know, "ataxic" wo..rds you don't even understand. Right? So you're like, ataxic?. What does that mean? Oh, right. balance issues..

Rina Teslica  14:01  

I didn't, you know, I didn't Google it. I because of that fear of like shit. I'm going to read something really f**king awful today. And then I'm going to be so depressed and it's going to just so what I did being f**king millennial on Instagram, I searched Noonan syndrome on Instagram. And it was probably the best thing I ever did.

Helen Gamble-Shields  14:18  

Oh, that's a nice thing to do. Yeah,

Rina Teslica  14:21  

I saw kids with the syndrome who were living a fabulous life. Yes. bear in mind its Instagram, and you're posting like the best part of your day. 

Lauren Fenton  14:35  

But maybe that's what you needed to see? 

Rina Teslica 14:36  

Yeah, it was just what I needed to see. And I think I followed, like, every Noonan syndrome child's account on Instagram, and I would be obsessed. I'd go on there all the time....So once Finn was born, obviously you go on maternity. What was your kind of trajectory back into work? Because you're obviously working full time now. And you have them for a couple of years. I imagine? What was that like once Finn was born and how did you manage that?

Helen Gamble-Shields  15:02  

Marcus, you know, he wanted to be, you know, like most dads want to be, you know, very involved. And I think shared parental leave had just come in shortly before we'd had Finn. And that was our intention that I would do nine months and Marcus would do three or four months - whatever we could afford. We are in the landscape and architecture business, right landscape architecture?! We actually only get statutory we don't have because they're mostly small, you know, small- medium businesses, we only get statutory maternity and shared parental leave money. So we only have a certain level of finances. And then we have to try to get back to work as if we had a mortgage pay, finances to pay a small child to, you know, look after. So we had intended to do the nine months and the three months, basically with just how unwell Finn was, I think I did an extra month maternity, so I think I did 10 months. And then Marcus looked after him for three months. We also realised we couldn't put Finn in with the childminder, and we couldn't afford a nanny, we definitely have no idea what special needs nanny cost, we didn't need to know. And so our only option then was, let's look at the nurseries. So I kind of thought they just wouldn't be interested, or were they capable or what they would offer kind of thing. But I did go to see a couple. And actually, they all were very much like, oh, well, that sounds okay.

Lauren Fenton  16:39  

Inspired you with confidence? Or?

Helen Gamble-Shields  16:42

Yeah, yeah. Well, "he'll probably grow out of it!" is what they said. While, I was going, "Ah, he probably won't.." But yeah, they seemed to be open. And then we found a nursery around the corner from our house that were willing. And actually she the manager, she had had a relative that had epilepsy. So she had a bit of an  understanding of it. And it was, you know, a family member had had epilepsy. So she was relatively open to it. And I explained, you know, Finn had an epilepsy community nurse that could come and do the training. And with her, we got a place for Finn. And to be honest with you, he absolutely loved that nursery. And his key worker was the SENCO. And I think that was first time I just met, you know, I don't know, kind of on your journey, you meet these people, don't you that are like, literally saints or angels. They're so caring. They're so loving. And here's your little child, and they're looking after him.

Lauren Fenton  17:43  

Did that mean you could go back to work then when he was..

Helen Gamble-Shields  17:47  

Yeah. So in fairness, we did do the shared parental leave. So I did go back to work. While Marcus has had him for a couple of months, right. And I think actually, that made it easier. Because I knew Marcus was with him. You know, I could trust him. And you did just feel he just felt much better knowing that, you know, you were in work. And yeah, he might need to call you. But he had been on he could look after him and Finn was was safe with him. You know, he knew what to do. And then, you know, then it was time for Finn to go to nursery, which was, you know, it was another step. But I guess I just didn't have that full separation.

Lauren Fenton  18:24  

It phased you in a bit. I think it's very difficult for any working parent leaving children in a nursery setting and going back to work for the first time. Like yeah, I went back to work after maternity with my eldest, Olivia, who people who don't know, or haven't listened to another episode of the podcast is two years older than Bea who has special needs. And when I went back to work the first day that I was back in work, and she was at nursery, she was bit on the face by an older child. Yeah, nursery, which, you know, it happens, right? It's like, it's one of those things, but like, way to make you feel comfortable going back to work to get that phone call on the first day. I was just obviously, like, fast forward a few years, it might have been Bea that had been doing the biting to someone else. So yeah. It's, it's different stories. But um, yeah, I just think that I can, I can imagine at least at the very least, that staging of having that time when Finn was with Marcus must have been somewhat helpful in terms of settling into the work environment.

Helen Gamble-Shields  19:34  

Yep. Yeah, definitely. It just really kind of did help. Because you could phone him any point, right?

Lauren Fenton  19:42  

And what was it like then when you went back? And that wasn't the case. So how was the juggling or extreme juggling, as we've named it, once Finn was in nursery? and talk us through some of the challenges that you encountered, too?

Helen Gamble-Shields  19:59  

I suppose in that, that first year then was that it was actually pretty challenging in that at that point, Finn, Finn's emergency protocol for seizure was to give midazolam immediately, somebody else's phone in the ambulance, they'd phone us and, and generally, we would go immediately to the nursery, which was by our house, so I basically just leave work, which, you know, I would just go "right, I'm sorry, I've got to go".

Rina Teslica  20:32  

Yeah. How was work? Because obviously, you'd been there for a while, before you'd had Finn. So you already had some sort of standing in the company where they quite understanding of the situation or after a while, would they like, right, you're gonna have to..pick?

Helen Gamble-Shields  20:48  

They were actually, I mean, I would go they were absolutely, they were brilliant. In that they would go, "yeah, you've clearly got to go and sort this is clearly your priority, right". And I think also, I was very aware that I did not want to take the piss, I knew it was a business, I would not want to be taking advantage of a business, I suppose. They were actually just brilliant, right? So I would, I would have to go, I would just go. And I could be there for away for like, a day, maybe, you know, I might have to go to the hospital stay overnight, and then, you know, maybe come in, so I might, like, take my phone and like, take my laptop, and just go. And then I would try and maybe check in later kind of thing. And I have been there a long time. And I kind of knew what I was doing. I had some really good team members and in fairness my directors, they were really good. I mean, I had kind of thought about going back and do you know, before I thought, Oh, I could do five days in four. But actually, I suddenly realised I can't do five days in four, I have to have the five days because I need complete flexibility to be able to get my hours done. Because if I was trying to cram hours into four days, I wouldn't be able to achieve that. Over some of that period, I would have taken some leave, I might have taken a holiday day, or I might have take a bit of unpaid leave... I'm struggling here, I can't make this up, you know, I or or I actually need a holiday. You know, we need to go to Ireland, I needed to be flexible, I needed to be able to have that ability to just, you know, work potentially from the hospital a little bit. But generally I'm working from home wasn't as, as usual..

Lauren Fenton  22:27  

What was the biggest challenge that you did encounter in those kind of early years of juggling?

Helen Gamble-Shields  22:33  

When Finn turned two in his first nursery in Kentish town, which had been a really good nursery, we have had early years funding. But obviously as Finn's seizures have become more difficult, had the early years funding, but that stopped as soon as the child turned two because they could then get their education and health care plan. So in fairness to this nursery, they introduced us to the idea of this EHCP. And they said that that was you know how you then needed to go and get more funding from our local authority. They started it when Finn had turned two-  it clashed with the summer months. So like nobody was there to do their flipping reports, right. So then they're supposed to do within a timeframe, it's legally required. And also there was cuts at that point in time. It just became a really, really elongated process. And eventually, they then did produce a report. And that report said that he needed a one to one. And we hadn't really anticipated that. I just don't think I was aware of these areas I just didn't know right. So then we also were really happy with the nursery. And we had said, Oh, we definitely want him to keep going there. He loves everybody. Everybody loves him. It's right around the corner from our house. You know, it's you know, that's where we want to go. And while we were doing all this Finn had turned two, he'd had so many complex seizures. He'd been in hospital so many times, Finn was on all the kinds of drugs that were for Dravet Syndrome, which are all very complex drugs. It's a concoction of about three main medications, but it wasn't really doing what it was supposed to do. You know, he had uncontrolled seizures, he was still going into status frequently, but a new drug was emerging for a trial opportunity. So the only things that was open to us we just we then embarked on this drug trial all at the same time as th like the EHCP we're starting this drug trials and things just turned to we're doing with the EHCP we are just embarking on signing the documents at GOSH to do this drug trial to help with the seizure control. The complexity of his seizures were just they were just changing just you know, just there and then you know there's nothing else coming on online here that is going to help him so we were frigging desperate. And then the nursery the nursery turned right and said we are refusing to be Finn's main setting on his EHCP I was like holy f**king shit..

Rina Tesclia  25:18  

All this time. You're working the entire time.

Helen Gamble-Shields  25:22  

I'm working the whole time. And well, okay, we'll go balancing it. But like at this point, Marcus had started his own business and got that uncertainty. Massive uncertainty as well. Yeah..

Rina Tesclia  25:34  

I'm counting five different things of what you're going through at one time,

Helen Gamble-Shields  25:36  

We were literally just crawling. And then yeah, when they said, then we won't be Finn's main setting, and they sent that letter they sent, because they sent it the worst, bit right, it was, they'd sent it to say, sorry, we won't be Finn's main setting. They also said, and you've got a four week notice by which point they'd already given it to Camden. So we had something like two and a half week notice of Finn being refused to go to that nursery. I was just so so friggin pissed off, because the letter was just like, his... just his needs are too much. They literally said he'd regressed. You know, nobody had said he'd regressed. It also said, we can't take him in our nursery because his seizures are getting worse. He's deteriorating. And it stresses our staff... Yeah. And also that just went through this friggin list of things like the nursery he's in at the moment is for toddlers, and he's getting too big and boisterous, though. He's going to go into the older children's, and then he's going to knock into them. And it's going to, it's going to basically hold them back was pretty much what it said. It was discrimination, right. And I'm so angry about it at the time. But I actually didn't have the friggin energy or the time, to do anything about it. Like I couldn't do anything about it. And I was just so pissed off. I was I was just, yeah, it was just so so shit. And so unfair.

Lauren Fenton  27:15  

It's just so unfair like, I mean, like, we can talk about unfair all the time but..

Helen Gamble-Shields  27:21  

So f**king unfair. And then I realised that suddenly this kind of thing started filtering through Finn's EHCP, that, you know, how am I going to get him into another nursery? What are we going to do? Where can he go? We had been allocated a really amazing key worker, I remember just going into your office and just frigging crying because I suddenly realised that there, I can't see how.... we can't work. We're being penalised for working and working and having a disabled child. And there is literally it seems to me that there's no other outlet. I'm like, This is the worst possible moment. That's happening right now. And we're getting no.. no help. I had to talk to IPSEA. You know, they're there. They they help, you know, kind of the legal things around..

Lauren Fenton  28:11  

EHCPS and funding. Yeah, we'll put the details in the show notes. Yeah, they're charity, aren't they?

Helen Gamble-Shields  27:16  

Yeah, they're a charity. And they have like legal advice and things like that. I mean, you can donate to them, apparently, you know, if you're so inclined, but they were actually very good as well. But they said it's very unusual for a local authority to give more than 15 hours to a two year old. But, you know, they are late and giving you the placement and everything and you know, they're in delay. You should push them and put your case to them. And they helped me write a letter, because writing a letter like that quite demanding, isn't it? But like IPSEA, and quite a lot of other organisations do have template letters. So, you know, I did kind of pen the letter. Yeah. Anyway, Finn was unwell was the middle of December, I think we'd got the, you know, he'd had seizures. We'd spent the night in the Royal Free was the 14th of December, the next day, my birthday. And then I just woke up in the Royal Free and they get the phone call, and they said, they've given me 30 hours. I went, thank you...God. And by that time, I'd found the nursery. And they, they'd agreed, and they'd given me advice and how we'd they could get the one to one, we could work some hours and balance that out. And, you know, we'd have to pay to cover the, you know, addition hours over that. But what it did was it kind of put it in something that was manageable. But it was the SENCO who had to kind of talk me through that, and how they done it for some other parents. And I kind of went well, again, it was a bit of a slap in the face like this is the most unfair thing there is that she's just given me the facts. And this is what we kind of we have, we have to do. So that was the 15th of December, it was like, Oh my God, that's the best thing that's just happened and we got we got discharged from the Royal Free and it was my birthday and it was my office Christmas party that night. Off I went to the office and my entire team were still in there, but I stopped there with them for two and a half hours and then we went to the restaurant and had our Christmas dinner.

Rina Teslica  29:50  

I bet that felt so good! and on that note, lets' pause for a top up top here as it was was very positive, not perfect..

Helen Gamble-Shields 30:01  

It was. It was a positive day! It was like a turning point in that day. Yeah.

Lauren Fenton  30:02  

And it sounds like that. I mean, f**king hell to go through all of that. It just really highlights the challenges of childcare..

Helen Gamble-Shields  30:05  

that childcare thing is such a conundrum. It was a minefield, like a minefield of you know what, what you could do, it just seemed that you were being discriminated against. Yeah, massively, you know, massively.

Lauren Fenton  30:20  

What was that stat that Rina quoted?  It actually costs on average three times as much as well. So you're thinking it's costing more to, like, you know, obviously, there's massive variance in that, but it costs you more with a child with special needs, and then you're being penalised.

Rina Teslica  30:30  

Because you're wanting to go to work

Lauren Fenton  30:32 

Part of that is because you having to pay for childcare, potentially, but the Yeah, all the additional costs around finding the right support. And like, everyone obviously wants to trust somebody with their kids. But when you've got somebody you need to trust with phoning an ambulance for your child, not like in a blue moon, or a rare freak event, but something that is likely to have quite common. And following a medical protocol. And then you have to go through a fight to get a place for that child in that setting. And the funding. Oh, I just it sounds horrific. I'm so sorry you went through all that Helen

Helen Gamble-Shields  31:11  

It was such an amazing nursery. So it actually it was a happy ending. Yeah, like, really, it was a happy ending. And not long after the 15th. Like later on in December, they let us off the drug trial. And then we were actually switched on to definitely getting the drug, which was another bit of a win, but it was just a pretty pretty. It was just horrendous period. And actually, Marcus would still say he's kind of scarred, scarred from that. No, he would say, you know, PTSD, and although I was like, it's sustained, you know, it's not like it's Post Traumatic Stress Disorder is like, just keep ongoing stress disorder, you know

Lauren Fenton  31:55  

You can still internalise that trauma and there are degrees of trauma that you can get through it sounds it sounds horrific,

But work was supportive all the way through?

Helen Gamble-Shields  32:14  

Work was really supportive. And I guess, I mean, I know, I'm lucky on that, you know, that I was had been with that company for a while, and we were like a little community. And they were just, they were really supportive. You know, like, even my team were really supportive. They were all just lovely, lovely people.

Lauren Fenton  32:37  

And sorry to interrupt but how, I guess I guess it's, to some extent, the support when you're in a more emergency situation I can imagine is there. These are supportive individuals that you've worked with for a long time, you know, you can't say no to somebody or be difficult about somebody going to meet the ambulance that's come to get their son, you'd imagine. But then the more kind of mundane stuff, how did you manage that? In that period, or post then the kind of therapies, the interventions, do you find that as easy and supportive to get through?

Helen Gamble-Shields 33:17  

I think when you kind of, when you, you read the advice, don't use the Ask people to, you know, try to get your appointments at times that suit you. So I guess we're kind of fortunate in that we don't live that far away from our hospitals. I think to that point, and probably feel a little bit tied to London.. I ask them for separate appointments. So we used to have to go and get bloods for Finn, I would ask for that at 8 am in the morning. And then I would try and get some of the general...some of the other general kind of bits and pieces done at that same visit. We also had to do an echo cardiogram, which is you know, the, the scan of the heart. It's really I mean, that's horrendous because Finn would have been, you know, first of all Finn has ADHD, and lying down with Finn is like absolute challenge, right? So I would separate that echocardiogram from the other appointment, because it's just too much for a small child to deal with anyway, so I would try and get that nine o'clock appointment. And then if there were questionnaires or anything, I would go there after work on my own where I wasn't, you know, we're having to be distracted by Finn as well. And I will do them there. But I was very fortunate in that my work is only like 15 minutes away from GOSH, and also in those early years the nursery which was wouldn't have been by our house. But it was right beside GOSH. So I could actually get him to nursery by, you know, by about 1030 or 11 o'clock, and you could nip back and forth if you had to. But generally, I would have got those appointments in early. The only kind of thing around that was that the consultant part of that appointment could be at any point. So I'd be like, literally kind of going, "that consultant is causing me delay!" But then I'd have to, like, catch myself on because that consultant could literally have been in an ICU with a very sick child, right. And I'm going "or is he?!" But yeah, or her, you know, but and also, they're very busy serving small children, right. So I had to kind of catch a grip

Lauren Fenton  35:28  

I love that you manage the shit out of it, though. I love that. But I like I, I never have been successful in...I'm better.,.. I'm better than I once was. But yeah, I love that you looked at different ways of doing it, I guess. So like, you break down the appointments, you and logistically make it work for yourself. 

Helen Gamble-Shields  35:55  

Yeah. It was easier to do multiple mornings in the one week than do it all at once. Yeah, that was like, that was like the least impactful on everything, including Finn. Because that's just to like, you know, I hope you know, he mean, he has ADHD, you know, he has ADHD, and we literally just be running around that CRF back and forth, you know, causing chaos. So, yeah, they, they would let us do that. And fair, and quite a few of the parents did it, actually. But you need to be fortunate enough to be nearby, right? Because if you're travelling to GOSH, you obviously can't do that. 

Rina Teslica  36:33  

I actually recently was able to so obviously, so my story is I'm now back at work, I took a six year hiatus because of having a disabled child and all of the shit that comes with that. But I just this week, so Lua's going in for surgery. And you know how you have to go in to do a pre anaesthetic assessment with with the anesthesiologist or whatever. And I find those appointments, such a waste of time, especially if they've been under anaesthetic at GOSH, multiple times in the last six years. So the woman called me on the phone like, "Oh, can you come in on this day?".. middle of the day.. And I was like, "No". And she's like.."well, if you don't agree, then we can't go ahead with the surgery". Bear in mind, the surgery is like, the most important surgery of her little life at the moment. Yeah. So I cannot miss it. And then I was like, "Okay, do you have an appointment after five?" No, cuz he doesn't work after four. And I was like..  "Right... times of COVID has changed the way things go, I want a video or a phone call consultation", I said, "because it's a waste of my time for me to come in and sit down and have a 10 minute chat. For him to just agree that she's fine for anaesthetic"... and she's like, "right, okay, I'm gonna have to speak to him". She called me back. 10 minutes later was like "Yeah, that's fine - we'll do a video consultation" 

Lauren Fenton  37:54

It probably suits them more anyway if it's medically not an imperative.

Rina Teslica  37:58 

No, not at all. COVID has like, yeah, COVID has massively changed massively. I've done this over COVID as well, because obviously self isolation and all of that stuff. Well, we had a couple of like, endocrinology ones where they wanted her to come in. But I was just like, No, I'm not going into hospital. Definitely. Not. And so now I know that it can work. And it's worked. And I will always ask for a video consultation. If I feel like there's no point in us travelling all the way. Not that it's far, but it's just such a waste. Yeah. So that I'm very proud of myself.

Lauren Fenton  38:41  

Well done! So just to give my story as well. So kind of similar to you, Helen, I worked in the same organisation for over 10 years before Bea was born. And then, and I'd gone back there, and between Olivia and Bea as well. So I've kind of worked...maternity... gone back, went on maternity with Bea, took an extra year of like a career break - Work were incredibly supportive in terms of all the options of leave that I could take. I was fortunate enough that Patrick's could support us so I could take extra time off. But when I went back, I think I just felt so much guilt all the time that I was failing as a mother and I was failing in a work context. And I thought that maybe I couldn't think clearly about being as assertive with hospitals because it was like, well, I need to be there. And maybe as well because she was that much younger because it was a while back that I was less kind of savvy about what, how to navigate the system. Yeah, and what was required and what wasn't required, like, describe Rina. So I think I just felt I was kind of f**king it all up. So I was like when I, when I had an opportunity to be with Bea and do the appointments and stuff, I would try and navigate that with work, which, and I always found it really... Again, it was pre COVID. So I always found it really tricky. To, you know, it was always the appointments. And then if for whatever reason they'd always be, there was very little choice. And they'd be in the middle of the day at multiple different hospitals. So my job was project management, management consulting, and accounting, very, very sad to confess that I'm an accountant by background and I worked in finance and stuff. But I was fortunate in that I guess there was a level of seniority as well, where it was I had a team so I could tell my team and manage my diary and say, I'm going to be out this time. But then how, I think Helen referred to earlier, you kind of need to be there, you know, like, you need to be there with the team. And there's like a level of support that you can't give if you're waiting in a waiting room in a hospital. And then I always had clients and was expected to go to the client. Again, this is in the context of a work and you know, and people who I worked for that were incredibly supportive, but it just wasn't the work environment that that suited that level of flexibility. Maybe it does now post COVID. I don't know. I mean, it was interesting. I actually quit my job. Before COVID Have in mind. I paid job, let's be clear, I do lots of jobs right now. My previous career. And when I went in to have the meeting with my boss, she thought it was a discussion about my promotion trajectory. So my like route to..

Helen Gamble-Shields 41:46  

So she didn't see it coming at all?

Lauren Fenton 41:50

No. And I think I think that's illustrative of a few things. One that it was like, it was an environment where there wasn't that it wasn't easy to sit back and coast and like, you know, coast is the wrong word, but it wasn't a sort of clock in clock out environment. There was an expectation that everybody wanted to push on in their career to move to the next level, you know, a very kind of corporate career driven culture. And, and maybe it has changed, I don't know, but but then I think it says a bit of a me as well, I think, combine that with somebody who's a bit of a perfectionist about what yeah, like, it sounds wanky, to say perfectionist, but like, I'm going to do something, I'm going to do it properly. And I'm quite ambitious and competitive and driven. So you put all of that together. And then it's very hard to strike any sort of balance or be able to manage that flexibility. I felt like it was so a lot of it was on me, you know, yeah, I couldn't figure out a way of like working flexibly. But I was working part time as well, which is interesting, what you were saying, Helen, about working five days, I managed to agree, an arrangement that worked three days a week for that period, which on paper was great, but then actually when the appointments come in, or the needs of the child are in those three days, suddenly, you know, you've got two weeks work where you're like, actually, I'm out that afternoon, and I'm out that morning and then so then yeah, the reality is, I would then flip my days and work other days. But I think eventually it got to the point where I was working kind of six days a week. I was travelling, I was going abroad. Um, and as just like the guilt was just just doing a gesture, which isn't great for a podcast, it was just mounting up and was kind of building inside of me. And yeah, it just I was waking up at like three in the morning thinking just wondering about Bea... what does the future hold, you know, all the... kind of thoughts. I think just night when I was having those thoughts and thinking what a terrible mother I was that I was outsourcing some of our care and yeah, all that shit. I  And no one was doing as good a job as I could do. And that's it...there's the control freak perfectionist coming in. But yeah, as I was having those thoughts, I was thinking but actually, like some I had a moment of clarity and epiphany that I wasn't actually really enjoying my job. So like, hang on, why, why am I doing it? And yeah, I'm very lucky that I was able to make that decision, but why am I doing this job that I'm not really enjoying. And like sacrificing what I feel I should be doing for my daughter.  It became kind of blindingly obvious. Of course. Now I feel like we're having walked away from that job. I don't have regrets about that. But my kind of identity was so entwined with that world. And that job for such a long time. It's really, I don't know, I suspect you maybe felt this for those six years. Rina, that kind of loss of identity other side of you that identity of more than a mum or way another role ir? Or carer? 

Rina Teslica 45:37  

Yeah, I had the exact same, so I had the complete opposite to the both of you. So once Lua was born obviously she was in hospital, as listeners may know, or not know. But she was in hospital for seven months until she stabilised enough for us to bring her home. And even then she was ventilated 24 hours a day, we had overnight care, which we still do...all the bits that made it impossible for me to go back to work, there was just no way that I could go back to work because my partner was obviously working full time in banking. So it's very much like a nine to five, office based, no flexibility at all. Even when Lua was born, he took two weeks paternity leave. And then I think just for his own peace of mind and his own sanity, I think he just found it easier to go back to work, concentrate on that, and be away from the hell that was going on in the hospital, and whether she'd live through the night or whatever. So he was concentrating on that while I was concentrating on Lua. And for the first three years, I was so into being there, being, the whole thing in my mind was like, I'm going to try and give her the best opportunity to survive and get to a point where she is independent. And so that was like my main goal. So then when she started going to nursery at three, even though it took me six months to leave her in the nursery, I went to nursery with Lua eight, six hours a day, five days a week, because I just could not let go. And I was terrified to just with the traccie and the bits. I was like, yes, okay, or trained people, but I just don't trust you enough. And that trust needed to be. So I stayed for six months, and then I suddenly had six hours a day to just do nothing. And that was the first time in up to that point three and a half years. Yeah. And I think it took me two years to like, get over the trauma, and to just understand everything that I'd gone through and make peace with it. And just be..and it sounds really cheesy, but be at one with my life now. Yeah, acceptance and just be like, right, this is this is it. And I think as we all know, like when you're going through hell, you just go through it and you don't really think you're kind of like a horse with the like, the I think the blinkers you're just going on and on and on and on and on. And it's years. And then once it's stabilised enough, you sort of go.. shit, that was heavy. And it just took me a while. And then the guilt from the other end is like shit. I've just, what am I? What am I doing with my life? Who am I? What do I want? Do I even know what I want? And all of those insecurities come up to the surface. So for me, it took a really long time to have enough confidence to say, right, I'm now ready to put myself in the working world and six years out of the working world. Massive knock to the confidence like you just don't even know what the working world is like. What is it like to even be in an office? Have things changed? What are people even like? What do you talk about? Because I've surrounded myself with the SEN community for so long. Yeah. Like how do you even have a conversation with somebody who hasn't gone through something so traumatic?

Helen Gamble-Shields  49:28  

Yeah, how do you make friends with normal people?!

Rina Teslica 49:39

Exactly. It was crazy. But I am now a copywriter I work for I work in the beauty industry. It's fab and the company that I work for, I think because COVID has changed the way the working world is I think especially in the company that I now work for, they are so forward thinking in terms of like working from home and having flexibility, major flexibility. And I'm not talking about having flexibility for me, because I have a child is disabled, and they don't understand, you know, they're flexible with everybody. They're big on mental health and having mental health days. And I mean, here's a random fact, we've got therapy puppies coming into the office tomorrow!

Lauren Fenton  50:23  

Oh, can I come and see one, please, I want to get a therapy dog. This is part of my plan. Anyway..

Rina Teslica  50:30  

I will, I will tell you all, what kind of breed they are in the company and all of that. So it's amazing, they are and I think I was so honest with the director and my boss, in like, the initial interview stages, like, this is my situation, I'm going to need total flexibility. And they were on board immediately. And I think both of them had said, and they're women as well. So I think women just have a deeper understanding of what it is to be a mother.

Lauren Fenton  50:59  

Look, we keep using the term work. And I like I don't believe that work is just these paid jobs or careers that we have like, there's shitloads of work that we all do. Yes, unpaid. You know, whether you get allowance for it, benefits for it or not, it's Shitloads that we do. And that whole thing about identity that you talked about six years of Rina, I definitely have gone through a lot of that since finishing my paid job. I think, yeah, I struggle with it still. But I'm trying to get better at understanding my value is not tied up to how much money I can bring into the household.

Helen Gamble-Shields  51:39  

I don't know. I mean, I, I don't know, I frequently say I go to work for a break. And it's, do you feel like well, no, sometimes, sometimes you go, you feel like works a bit of a break, right? You can have like a hard, like a very challenging weekend. And you come into work, and you go, Oh, this is good. I can do some emails, I can achieve a few things. But I'm sitting on my ass doing it. Or I might be walking around a building site or something. But um, it's, you know, got a certain pace to it. It's within a level control. Yeah. So I'm just that sometimes it can be an easier option.

Rina Teslica  52:18  

Right? Yeah, I think that is why Arbs went back to work so quickly. I think he needed that break away from what was going on. And work gives him that stability of like, and he's quite a control freak as well. So I think it worked really well. But now that I'm working, I totally see it as well. Like if I've had a long weekend with Lu. And then going in to the office, I always go in on a Thursday. So that means that I've done a weekend with her. And then Monday to Wednesday, Monday to Wednesday, I'm doing all the bits with her an evening or the bath and the feedings. And then on Thursday its a relaxed day. Yeah. Basically going into work is a reward. Yeah, I love it. I love it

Helen Gamble-Shields  53:10  

Yeah, it can just be, it's a change as well, right? It's a bit of a change of, you know, routine that that caring role can be very demanding. And, you know, and there's a lot of kind of very repetitive or very extreme, different things, you know, and then you can go into work and in fairness, actually, I think, from having Finn and having such major trauma at very different points I deal with I deal with, like, you know, those challenges and work like, oh, right, okay, then we'll just we'll deal with that perspective. It's perspective, whereas I might have been like running around like a headless chicken before, you know, now I'm like, Okay, well, that sounds a bit challenging, but we'll just look at it for you. Yeah, you do. You just I think you grow as a person, right?

Lauren Fenton  54:00  

I remember being - I used to do a call from from the nursery with, like the management team, and they will be gossiping, right? And having this like chitchat, but I was sitting in the cafe in the nursery going, "I need to go!".. it made me the most assertive kind of annoying for them to.. chop chop.."right, so is there an actual f**king action there?!" I wouldn't swear obviously... I might have done sometimes. You guys have never seen this side of me of course.. Rina?!

Lauren Fenton  54:40  

I just but yeah, like that sense of perspective. And what's important, I think, really is great for like managing crises in the work environment and, and so I once sat down with..the organisation I worked for there was this I was put in touch ..we actually had a special needs parenting group?  But I met the lady who founded that I remember sitting down with her when Bea was really small and talking about kind of coming back to work and what it was like, and she had listed all the skills that you learn as a special needs parent that are just so f**king valuable for any work environment. And can put, you know, the amount of navigating of systems and kind of persuasive skills that you need, the amount of assertiveness and the ability to deal with crises. I mean, you can like, I can't remember all the things on her list, but you can just, we can all think of things that you have had to learn how to do, that, clearly in all manner of work environments, incredible, incredibly valuable, but I just think. How do you convey that to people is, it's, it's great for your own kind of, I guess, maybe to build your confidence going back to work, but I'm not sure that people truly understand how much you kind of learn and grow and develop just..

Helen Gamble-Shields 56:08  

.. by being a special needs parent. Exactly. I think, yeah, we need to tell them all they're amazing. And they need to realise this, right?

Rina Teslica  56:17

Yes. 100%!

Lauren Fenton  56:18

Yes, exactly. You ARE amazing. And you, you don't think of all the skills that you're building, even if you are having time out from work, you know, paid work in whatever job or field that you want to pursue. I think the other thing that I remember doing was so before I went back, after my kind of extended period of maternity would be I did actually shop around a bit and look at some other jobs thinking that maybe it wasn't the right environment to go back into that consulting environment. I remember getting the advice from one of the recruitment agents to not kind of lay it all out there. 

Rina Teslica 56:59 

I had the same advice recently, when I was looking for my job..

Lauren Fenton  57:05  

I mean, yeah. What like, it's a really wanky phrase, but whatever happened to "bring the whole whole person to work" or whatever the f**king phrase is?!

Rina Teslica  57:13  

I think, for me, he said to word it as if you were a personal assistant type role, because really, he he kind of implied that it's not looked down upon, but just "caring" doesn't have the same level of weight

Helen Gamble-Shields  57:34  

Jesus, you'd think COVID would totally have changed that right?!

Lauren Fenton  57:38

Yeah, this is post COVID. Right?

Rina Teslica  57:45  

Yeah. It's, it was just crazy. Crazy. But I mean, it, I listened to his advice, and I got interviewed. So things need to change, I think massively in terms of that

Lauren Fenton 57:57

Has it been better since COVID? Do you think Helen like with the context of kind of pre and post in the same work environment?

Helen Gamble-Shields  58:04  

I think definitely post COVID Just that ability to be working at home and things like that is much easier. And that ability to have, as you mentioned, also, like just the, you know, hospital appointments by phone is like, that's fabulous right. But ya know, just even talking to you know, you can have phone calls while you're walking. You know, like, I remember doing that early COVID You know, when there was no help, and no schools like, I don't know, we've probably don't want to get into a COVID discussion, right? Because that's a whole different show, isn't it? 

Lauren Fenton  58:38  

Yeah, we'll do an episode on that.

Helen Gamble-Shields  58:42  

That was horrendous. How are we supposed to work and try to look after you know, a child. You know. Finn doesn't watch the television!

Lauren Fenton 58:51  

That must have been so hard. So that was COVID I guess Finn's back in school full time and does more face to face work? How is juggling all the different Helens now in this world?

Helen Gamble-Shields  59:06  

Yeah, all the all the all the different types of Helen's.. God.. got help the planet right. But yeah, yeah. I guess like Mum Mum Helen, obviously Finn is back at school and I guess school is is normalising, you know, they are starting school at the proper time. He you know, rather than you know, starting late, he finishes the proper time we have school holiday so you have to just manage all of that and do the school drop offs and get the get the after school care and try and sort all that out and just me and Marcus taking turns to get into school we we try to get our exercise in by taking him to school, so we are like the freak parents who run our child to school w have like a jogging buggy that fits into he is getting too big for it. And you can see a few people looking at us going. You do know your child is pretty big for that buggy. But you do get a lot of street cred. You get a lot of people telling you. Wow, that's impressive.

Rina Teslica  1:00:05  

So I have to admit it is a sight.

Lauren Fenton  1:00:09

You run up hill with the buggy with Finn in the buggy right?!

Helen Gamble-Shields  1:00:11  

I know. Yeah, yeah. He is 25 kg. Yeah, so it's a bit of a it's, I actually reckon I'd be alright on a building site, you know, with those wheelbarrows just lugging things around. But yeah, that's how we get Finn to school. And, obviously, because it is a special needs school, it's not like, I don't know, my friends who work and have kids, you know, they have breakfast clubs, they have after school clubs, do all those kinds of things. Whereas special needs schools, they don't really, there's not really that.. there's no wraparound care and suddenly realise that wraparound care isn't really available to us. So Finn does, we do have about three different childminders or carers that look after Finn after school. So we do drop him off. So we do get to work, we take it in turns, three days, two days, and try to balance that out. Sometimes the meetings creep in and you have to do a bit of bartering - so me and Marcus do the bartering the night before which is generally over a glass of wine. I go "I accidentally got booked into a meeting tomorrow would you be able to do school drop off?" And yeah, sometimes it's fine and sometimes it's yeah, no, we've just then you're into a barney situation.. we do try to pre plan and try and do the same day through each week. But yeah, so we do try to balance that out. So we do do the school drop offs. And it is quite nice because you get to spend that little bit of time with Finn and he'll actually really loves going along the canal or, you know, running on Canal running through the park to school. You know, he does, he quite enjoys it. He just likes the motion. He likes the wind in his hair because he just gets the sensory feedback you know, so he does really enjoy it. I mean, like screeches down the canal and I'm like, the Ducks are getting freaked out Finn. But ya know. Yeah, we do drop them off. And that's kind of our big thing. And then in the evenings he has his carers who take him back there are actually teaching assistants from his school. So we did kind of, we lucked out there. He doesn't get bathed every night because I just can't

Lauren Fenton  1:02:23  

not necessary! 

Helen Gamble-Shields  1:02:28  

Right. Yeah, it's not necessary

Lauren Fenton 1:02:29  

It's like letting some of the stuff go, I think isn't that important? It's way too much pressure on yourself and the whole family. And you know, it's not it's yeah, it's priorities and perspective. Again, it just comes back to it isn't that. I think I'm really guilty of like, trying to do everything and having to like have a word with myself and you know, decide what's going to give because you can't you can't you can't you can't do everything the whole family is going to eat and what that everyone's had their nails cut like I did because these these nails get really long before like because it grows quickly they

Helen Gamble-Shields  1:03:15  

I get freaked out by how fast nails grow

Rina Teslica  1:03:19

you know how I know when it's it's now cutting time is when Lua's got a big gash on her face that

Helen Gamble-Shields 1:03:28  

they do scratch and they scratch you as well.

Helen Gamble-Shields  1:03:36  

Water oh my god yeah, no that is the worst 

Helen Gamble Shields  1:03:37  

No yeah and then 

Lauren Fenton  1:03:37  

So you've got it sorted basically more or less than it sounds like.. nailed it!

Helen Gamble-Shields  1:03:43  

Our big thing is we have to get meds you know, so like morning you have to do his meds evening you have to do his meds. That's the big thing, isn't it. So if we, you know you have to be home to do meds, or you have to set them up for somebody else to do the meds, you can write a dissertation on what those meds are mixing those meds, giving those meds how to give those meds if Finn doesn't want to take them. This is what you might have to do - that kind of thing. And then it's  - he actually can't self settle. Finn to go to sleep. I mean, sleep is obviously a big issue we can all talk about. We could probably talk about that for ages, but Finn doesn't self settle. So we have to put him to bed generally every night which can take a bit of time. So I'll quite often sing to him and I can't sing. So that poor child has to listen to me singing..

Lauren Fenton  1:04:31  

Do you want to give us a little rendition 

Helen Gamble-Shields 1:04:33  

No, I won’t Lauren, but I know a lot of songs.  Yeah, yeah, it puts him to  sleep. And it's like kind of some sort of self meditation sometimes, you know, and then you get that little moment when he falls asleep, and you're like, You are the most beautiful child there is in the world.

Helen Gamble-Shields  1:04:48  

I don't want to go too negative, but like Finn does class, he has cluster seizures. So my big thing is, it's, it's the kind of the repetitive fashion of it. So, every couple of weeks, he will have cluster seizures, where he, you know, he'll have maybe 18 seizures during one night. So he'll start that up, you know, he'll go to bed until maybe 20 minutes after he falls asleep, he'll start having a seizure, a seizure. And, you know, they generally self- terminate, so they stop themselves. So there may be only last about a minute and a half. So we don't have to give him the kind of recovery drugs. But he'll have more throughout the night. So then, you know, Yeah, it's really exhausting for him. And he also can become quite, quite tormented through that period, because obviously, he's obviously having just little brain activity, probably right, right through the night, you know, but yeah, that's really exhausting. And then he just doesn't really sleep. So you don't really sleep. So. But you have to get up the next day, right. And he actually wakes up and wants to leave the house, he actually frequently wants to leave the house in the middle of that night, because he, he's so tormented by it, he kind of wants to leave as he wants to leave wherever you can see, as well as leave his body. He wants to leave the bedroom. And then he wants to leave the house. And he's like, we'll go down. He doesn't have the balance, right. So you have to be right with him, because it's really quite dangerous, because he's quite ataxic. You know, he's had poor balance he's ataxic, and especially when he's having this seizure activity. He he just wants to get out, or f**k out, right? Yeah, exactly. And his safe spaces as either like in his bed, which is clearly not safe space for him when he's not that well. So he wants to get in that the buggy, the buggy, safe space. So he will go downstairs and get in that buggy. And then he just, he will grab you and take you to the front door. Like he and then we'll get back in the buggy to go. "I want to go out!". And like it's three, you know, it could be like 2:30am 3am And you're like, 

Lauren Fenton  1:07:01  

Have you ever taken him out? 

Rina Teslica  1:07:02 

Yeah. Have you ever taken him out? Yeah, go on, be honest you have?

Helen Gamble-Shields  1:07:07 

I've never done it like, past, like, 11pm.  I've taken him at 5:30am. Like, I've taken a mic a couple of times really early. But I've kind of just gone no, we can't go out at this time. We, we just can't do it. We live in Camden for a start, you know, sometimes we stand at the window, and I'll look I'll go wow, the streets pretty active, you know, there's stuff going on. Or I bet you that car doesn't really, doesn't want me and my little son looking at them while they're probably doing something illegal. You know? It's the street rough streets of Camden. But he, ya know that that is he does that. And then we are I know a lot of families, you know, with epilepsy and our friends that we all know that, you know, that does happen that they just have bad nights. And then the next day, if he has settled enough, we'll take him to school. And we quite often take him to school because the school obviously has health care in the school. Yeah. And they're obviously trained to look after him if they know if he's going to be so upset in school, that they'll just phone us and we'll come get him. Yeah, you just have to you have to sleep with them. And you have to monitor them all. And also you have apps, you have like apps on your phone to monitor the number of the seizures, the length of the seizures, so that you can pass that information on so. So quite often, you can just wake up, you make sure he's okay, you roll over, you press your phone, you put the information, and then you roll back and you go to sleep. And you suddenly realise you can go to sleep between quite you know. So you get yourself in this kind of "I need to sleep" asleep, then you realise you've woken up, press the phone again. And then the next day you wake up and you realise press the phone like four times in two hours or something but you know, you went back to sleep for those like little 15 minutes. Sometimes you stay awake

Lauren Fenton 1:09:10  

It's like your normal, your f**king normal almost

Helen Gamble-Shields  1:09:13

literally f**king normal for those days. And it absolutely sucks and it really sucks for Finn. And I'd quite like to get a better grasp on it. But at the moment there just doesn't seem to be the medications out there to do it. And he's also developed not eating for those periods. So he doesn't eat or drink for maybe two to three days. That's put us under a bit of crisis situation recently because he's been dehydrated twice to hospital admission levels, but we're trying to get that a bit balanced and we're about to go to see an eating specialist. He - we had tonsillitis, myself and him, last October, and I couldn't eat. But obviously I have the kind of the, you know, the, you know, I mean, I know exactly. Whereas he just went no, it hurts. I'm not eating it. Yeah. poor wee thing. Yeah, exactly. So he's kind of some sort of association. But when he doesn't feel well, that he's decided he doesn't want to eat or drink. So that's a little bit... So we've raised it with everybody. And, yeah, so we just have these bad moments for those couple of days, every couple of weeks. And you just get through it, right?

Lauren Fenton  1:10:33  

It's all about learning..

Helen Gamble-Shields  1:10:36

You learn to manage it, right? I mean, I'm not. And I can go to work and be effective, like well not okay.

Lauren Fenton  1:10:44  

I’m sure you're more than effective, impressive and excellent!

Helen Gamble-Shields  1:10:48  

I'm probably not as effective. But I can go to work and function like the next day, but it goes over that period of time, you have to start to address it, you know, you can't keep going, you know, I might not do a 10k run that day, you know, or I might not run at all, and might drink an awful lot of coffee, and maybe eat a lot of Haribo or something, you know. So it's just all the little things you get do to kind of get through and then you just have to take it easy and possibly, you know, not drink too much to make sure you get good quality sleep and that kind of thing. 

Rina Teslica 1:11:23  

Helen, what do you do? Like, in terms of like, that cheesy thing of like self care? Like, what is it that you do for you? Because you're an incredible, amazing super woman, mother, the whole shebang? But what....running is 100% something that you do, but what else? When you've had those shitty couple of days? What is it that you do to take a step back and be like, right, I need this? What is it for you?

Helen Gamble-Shields  1:11:53  

Um, yeah, it's probably just that chill out and the couch, maybe that glass of wine, just that literally just sit on my couch. And sometimes I think, God, I wish I can have better, I probably should spend a lot of money on a couch because my couch isn't even that good, right. But I do really enjoy sitting there with my remote control. I don't even watch decent TV because I quite often struggle to commit to a programme. So I literally just last night, I watched two episodes of Travel Man, and I really, really f**king enjoyed it. I just had a little glass of white wine. And then that wasn't like, post a massive seizure cluster, post a massive seizure cluster, all I really want to do is, is sleep.

Lauren Fenton  1:12:42  

You guys are amazing, and how you try and strike a bit of a balance.

Helen Gamble-Shields  1:12:54  

I do think, we've definitely got a balance. And I feel like we've had a balance for like the last couple of years. I mean, it's peaks and troughs at the moment, you know, we are, there's something new happening a little bit in terms of his not eating and drinking. But I think we'll you know, we'll deal with that. Because we know we've dealt with things before. And so it's almost that you've kind of learned through experience that, you know, you can hopefully solve these things. But also we've kind of accepted that, you know, Dravet Syndrome and you know Finn’s  illness and condition is going to continue to chuck stuff at us, you know, and it's gonna continue to do that. So it's like, we can't plan stuff. But like we can like just try to. That's all you can do, right? Just try to just try and be flexible about it. And hope for hope for the best. Right? And cuz you don’t want to stop.

Rina Teslica  1:13:52  

Amazing. Amazing. Well Helen. You've listened to our podcast and you know that we always end with a hashtag awkward. So what's yours?

Helen Gamble-Shields  1:14:02  

I actually had quite a few of hashtag awkward I thought I can choose from, but the one I'm selecting for you is I told you that Finn frequently goes to the clinical research facility in Great Ormond Street. And he had a bit of a reputation when he was about two, three years old, of having quite a lot of seizures, and potentially while he was in there, so whenever we went in, the nurses were on on edge, because they aren't actually that used to having a lot of kind of medical emergencies. So there was one day Finn and I were in, Finn was in quite good for him. And we go to the toilet, and I've changed Finn, dones his nappy and everything. But I decided I need the toilet too. So I let my little toddler run, walk around the bathroom. The next thing is he walks over to the wall and I'm like no don't go out the door Finn don't go out the door. And he turns around, he hits the RED TRIANGLE. Right? Well, I am like, oh my god, the alarm goes.. massive alarm. And the next thing.... I am pulling up my pants and I am like standing there and there's about three nurses in the toilet. I went, he's fine! He's fine! I'm not though! It was quite funny.

Lauren Fenton  1:15:25  

I'm sure. I'm sure they've seen it before. 

Helen Gamble-Shields  1:15:29  

They are nurses. They've seen it before. Right? They were just in shock because they literally just arrived to work. And the next thing is, boom, the alarms going off. And it's like, oh my god Finn's in the building!

Rina Teslica 1:15:42 

Yeah. Amazing. That's so good

Lauren Fenton  1:15:47  

Awkward moment!

Rina Teslica 1:15:51  

Thank you Helen so much.

Lauren Fenton  1:15:41  

Yeah. Thank you. Thank you so much for coming on the podcast and telling your story. 

Helen Gamble-Shields 1:15:46 

No, I really enjoyed chatting to you guys. It's good fun. With my wine.

Lauren Fenton  1:15:53  

And finally to end Helen, what is your f**king normal?

Helen Gamble-Shields  1:15:58 

My normal. I guess? Every day since Finn was approximately five months old. I have watched with "You can't stop the feeling" by Justin Timberlake on YouTube. And he is six and a half years old. So we are probably Yeah. Creating a lot of cash for Justin Timberlake.

Lauren Fenton  1:16:29  

It's been amazing Helen. Thank you so much. Next time, we'll see you in the pub. 

Lauren Fenton  1:16:36  

Thank you so much for listening to the f**king normal podcast. We love making this podcast. Yes, we do. We are part of a much bigger team almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences.

Rina Teslica  1:16:57  

So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at Fkingnormalpodcast.com That's f k ing normal podcast.com you can join us on Facebook and on Instagram at f**king normal underscore podcast. That's f k ing normal underscore podcast. You can get all the links and more information in the show notes below.

Lauren Fenton  1:17:21  

So thanks so much for listening all the way to the end. We'll see you next time. Byeeee!

~Music continues “wake me up, loud as clouds, all my love for you” 

Episode 3: Relationships

~music - “Wake me up, loud as clouds.. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Lauren Fenton  00:16

This is the f**king normal podcast, the cheers, tears and Friday night beers of parenting disabled children.

Rina Teslica  00:24

I'm Rina

Lauren Fenton  00:24

and I'm Lauren.

Rina Teslica  00:25

And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories and to chat about the things that we've learned and are still learning.

Lauren Fenton  00:40

Prepare to sometimes laugh, sometimes cry, but hopefully leave with a shot of optimism in your arm. Don't forget, we are talking from a parent's perspective, we would never presume to talk on behalf of a disabled child or adult. So, expect bad language, and quite frankly, some brutal honesty.

Rina Teslica  00:59

Because really, what the f**k is normal anyway? Welcome to another episode of the F**king Normal podcast and in today's episode, we're talking about Relationships, in particular partner relationships. Whether you're parenting together or alone, we know that children can have a huge impact on a relationship, and especially when the child has disability. So, I want to start this episode and talk about my relationship status... I am recently engaged to be married, I've been with my partner for seven years and we have beautiful Lua who is six. Lauren, you...?

Lauren Fenton  01:48

I am married to my partner in crime and co-pilot, the lovely Patrick. We were together for around 10 years before having children. We married, then had our first daughter, Olivia, and then had Bea, who has special needs. Jesus, I am so bloody traditional- we had the whole, huge white wedding- the whole lot. And that's me.  Today, we are going to be joined by our gorgeous and wonderful friend, Vicky, to talk about Relationships. Before we get into it, I want to flag that this episode contains potentially triggering themes of Domestic Violence. The names, locations and dates have been changed to protect the privacy of individuals and any resemblance to actual persons, living or dead, is purely coincidental. As I said, today, we're talking to our friend Vicky. Relationships is a broad topic, with many facets. So, we will cover this topic of relationships across various episodes, not just this one- but, as Vicky will describe, she has quite a lot to discuss on the topic. Vicky is a single mum to her four year old son, Xander. She works in strategic consultancy and I'm delighted that she's a fellow wild swimmer, too. We sometimes go swimming together. Vicky's son, Xander, has many diagnoses, including Lissencephaly- a rare, life-limiting brain malformation and uncontrolled Epilepsy, with multiple daily seizures. He is registered Blind, is nonverbal, is a wheelchair-user, and he has numerous other diagnoses, besides. I can personally testify that Xander is the sweetest little chap and most charming guy you'll ever meet. So Vicky, welcome to the podcast. Hello.

Vicky  03:47

Thank you for that lovely intro. Hi.

Lauren Fenton  03:50

I guess to start us off, and give us background, do you want to just clarify your relationship status, today?

Vicky  04:01

Sure. In the course of my child's life, I've had multiple relationship statuses, including, in no particular order; I've been married; a domestic abuse survivor; divorced; single; dating, and in a long-term relationship. I recently realised that I own many Daily Mail stigmatised labels as I'm a divorced, single mother of a disabled child- and it is surprisingly liberating. I'm really proud of us. I believe that we're doing the labels our way and I'd like to think, with a modicum of style as well.

Lauren Fenton  04:40

F**k, yes

Vicky  04:43

The point of telling you about my multiple relationship statuses is that I reckon I'm qualified to discuss Relationships on a Disabled Parenting podcast.

Lauren Fenton  04:54

Well this is why we picked you... Thanks- it's great that we've got you on here.

Vicky  05:02

It's worth saying that Xander, my son, is amazing. We are the Dream Team. As a result of living with me 90% of the time, Xander is inextricably linked with all my relationships. I wouldn't change it for the world. We live in a mellow, little love bubble.

Rina Teslica  05:22

It sounds serene and lovely.

Vicky  05:26

It is, most of the time, when there isn't epilepsy involved.

Rina Teslica  05:31

Let's not talk about that side...

Vicky  05:35

It's worth saying that my aim of sharing my abridged story is, hopefully, to give hope to other listeners on a similar journey, be that single parents, those in more unconventional setups, or those who are currently in toxic relationships, whilst caring for a disabled child. A 1/4 of women experience Domestic Violence from intimate partners and I believe that it's really important to talk about it and not sweep it under the carpet. Undoubtedly, there will be listeners in a similar boat, and, to those who are still in toxic or abusive relationships- please start listening to yourself. Listen to your gut, learn about Domestic Abuse and, eventually, seek help to get out safely, for both your and your child's sake.  Sorry, I've taken it to quite a dark place... but sadly, abusive relationships will only get worse. There are amazing charities who will help you to safely escape, like they did with me, e.g. Women's Aid, Solace, Refuge, DV Helpline and local Domestic Violence services. They will believe you, they're experienced, and they will help. The number one reason why domestic abuse relationships end is due to having a child (and wanting to protect them). I'm no different and certainly, having a disabled child, I believe, may exacerbate this further.  My child gave me the strength to leave- I didn't want him growing up in that environment, with fear. On a more positive note- it is so much easier to parent a profoundly disabled child without constant criticism, gaslighting, belittling mean words and actions, which just sap away at one's confidence, worth and energy. Also, honestly, single parenting is a walk in the park, in comparison. That is the irony because, when you're in a toxic relationship, you may have an abusive partner telling you that you wouldn't survive without them. Yet, the polar opposite is true... The sun shines even brighter beyond that relationship. You can relax, without constantly having to walk on eggshells, just to get through every day. However, I'm not sugarcoating the entire single parenting existence. Practically, of course, it is quite grueling, sometimes being in A& E alone, with a poorly child or dealing with teething at 5am by myself, but it was still far easier than being in a terrible relationship with someone whom I was scared off, in addition to the exhausting reality of caring for a disabled child, as wonderful as he is.

Rina Teslica  08:17

Wow, that's, it's intense. I want to go back to the Pregnancy. Can you talk us a little bit about just what your pregnancy was like? I wish it could be a bit cheerier here... However, my pregnancy was tough and lonely. I think it that it's a vulnerable time in a woman's life, anyway. The context is that I was already in a toxic relationship but, honestly, I just I hadn't fully acknowledged it. Despite the red flags, despite so many instances of unacceptable behavior, and my gut instinct, I had lost confidence in myself and I loved the partner I was with. Instead, the trajectory followed that of many abusive relationships- my long term partner's behavior actually markedly worsened during pregnancy. This is common in DV relationships. To make this easier to describe, let's call my partner Bob. Bob's previous controlling-behavior stepped up a gear, when I was pregnant- from the moment I was pregnant. This took on various forms. I believe he; Isolated me from friends and family, geographically and emotionally. He hated me even having phone calls. He had really controlling behaviors, particularly around things like my eating, because I was told I was fat and ugly, so I couldn't eat bread, which I would sneakily do on the side, anyway.

Rina Teslica  09:47

Don't we all.

Vicky  09:47

He would gaslight me about petty things, through to really serious things, like telling me I shouldn't go to A&E, when I had a suspected miscarriage, after going down stairs. I was told I was overly dramatic when, in hindsight, I was absolutely not- go to A&E.

Lauren Fenton  10:03

Oh shit.

Vicky  10:03

Financial control escalated when I was pregnant, too, which is also really common in these relationships, which one only discovers after being out of it, for example, I bought all our baby items from my own personal account and savings, whilst he was making these huge cash withdrawals from the joint account, when we had joint bills to pay, which just added to the unnecessary stress.  Then, his paranoid episodes started increasing in number. He'd had a few of them before, but I always thought that maybe he was just stressed with work. I believe now, in hindsight, again, that it was ultimately about breaking down my boundaries... So, he'd have some paranoid allegation, which ultimately meant I'd have to give him my social media passwords, my email passwords and my banking passwords, to prove that I wasn't guilty of the fabricated allegation.  That or weird allegations, like one about him with drugs and friends, which I was completely baffled and bamboozled by, instead focused on being pregnant and just trying to nest, with nothing to hide, so, gave all my passwords. I complied because I loved him, I trusted him and I had nothing to hide. I thought- I don't know where this has come from, but go and fill your boots. In hindsight, I may sound really naive, but I didn't even suspect that he was then accessing my phone on a regular basis. I genuinely thought that it was just me being dappy and having pregnancy-brain, when things started changing on my phone. Then, after Xander was born, videos and photos were deleted, social events were changed, like the timings were off and emails were deleted or read and, I convinced myself that I had early Alzheimer's or it was baby brain. I remember telling Bob about this, my fears and hope that my brain would return back to normal. I was worried that I wouldn't be employed in the future if I was genuinely that dappy. In short, I was pregnant, tired, worn down, and I thought I could fix it. I thought I could improve our relationship and stop the criticism and his yelling, if I just tried a little harder; and if I followed his ever-changing, incredibly controlling and meticulous rules, which would keep changing as the goalposts just kept moving. Then, increasingly, he started to scare me, too. It started in arguments, when he'd break my things, when he was angry. It tended to be things that meant something to me or was sentimental about, including a brooch from my best friend, photo frames, hair straighteners and he kicked a plug off a wall. It was my punishment- he'd say, "Look what I'd made him do". It was effective in making me scared of him, physically. Then, when he escalated to doing emergency stops with me in the car, when I was heavily pregnant- I was just so scared. So, we'd be driving along and then he'd suddenly stop the car, to roar and scream at me. And I was just petrified about the pressure of the seatbelt on my unborn child.

Vicky  12:42

Then there was a pushing down stairs incident as well, which wasn't wonderful. So, pregnancy wasn't great.

Lauren Fenton  13:13

Shit.

Rina Teslica  13:13

Gosh, I'm so sorry. It's horrible.

Lauren Fenton  13:29

Horrendous. I'm really sorry that happened.

Rina Teslica  13:33

There are no words. Whatever we say, we'll never be able to encompass everything that we feel about any woman, not just you, being in that situation with somebody and making them feel that type of way.

Vicky  13:46

It's just sad but out of it came an amazing small child.

Lauren Fenton  13:50

So how was the birth of Xander, when he came into your life?

Vicky  13:54

The birth was 50/50-  absolutely terrible as we thought we'd almost lost him. He was very distressed, there was an emergency C section and he required oxygen but it was also incredible. It was the best morning of my life, to finally have him out, to know that he was alive and he survived and I'm still so incredibly grateful for the opportunity to be his mum. I fell madly in love with him, the minute I met him. I'm getting teary, just saying that. The first few months of Xander were absolutely wonderful but also exhausting like any brand new parent. I don't know if I could go back to that again.

Lauren Fenton  14:47

And how was the relationship, during that time?

Vicky  14:50

In the first few months of Xander, I was so focused on my little guy and what he needed that it was excellent single parenting preparation because I did everything, by myself, on no sleep. Xander cried a lot. The jigsaw pieces of his diagnosis were there, but I didn't know- I was a first time mum... I'd take him to the GP with unexpected issues. The GP would say I was just a first time mum but my mind would wonder about the explanations, like, the GP said he might have asthma when he's five weeks old. I remember thinking, really? It's the middle of summer, he's wheezing and has feeding issues but I guess, if you say. I also realised that my already fractured romantic relationship was now a gulf. Yet Bob, the long term partner just refused to help. He told me it was a 'woman's role' to look after my little guy single-handedly. How had we not had this conversation until, suddenly, Xander was around and needed care? Bob would just do petty things, like refusing to take photos of Xander and I together because he knew it meant a lot to me. So, I ended up repeatedly begging him to take photos of us.

Rina Teslica  15:12

Oh God.

Vicky  16:01

I'm assuming it was perhaps resentful jealousy that a new person had come into my world and was taking my attention.

Rina Teslica  16:08

Yes and it was a boy.

Vicky  16:09

Xand was absolutely wonderful, with incredible newborn hugs. So yes, the first few months were tough... I doubted myself, a lot. However, at the same time, like any new parent, I also was gaining confidence in getting to know my child. It was a wonderful dance of figuring out who he was, and him figuring out who I was, and the bond was there. I think we had quite a strong bond already but it grew much stronger, as a result. However, two months in, I realised that my relationship with Bob was properly screwed. So, me being me, thought, I'm going to give it another attempt and I'm going to do something to fix it. It was a desperate attempt to save things with Bob. So I made a stupid big gesture of gifting him tickets to Venice as a romantic break, with Xander and I, for my own birthday, which was really weird. I don't know why I thought it was a good idea. Maybe it was newborn, sleep-deprived logic, booked at 2am. Yes- this would be a great idea. It was terrible. No-one should ever go on a romantic break to Venice, with a newborn. Xander screamed a lot. He had colic. It was noisy, there was heat and stress, because it was June. Bob, the partner, behaved appallingly towards us. He acted like a moody teenager, on my birthday, and he called Xander a screaming brat, which really pissed me off.

Lauren Fenton  16:09

How old was he, at this point?

Vicky  16:27

Two months.

Rina Teslica  17:03

Two months. Ffs.

Vicky  17:22

So, after a day of teenage silent treatment, on my birthday, I politely ignored it and then, I just got fed up. We went back to the Airbnb and I asked, "Why are you being like this? I want to have open, honest communication about our relationship. Are you in it? Do you love Xander? Do you love me? Is it over?" He was then mean. He told me he was disgusted by me as I'd been so obese during pregnancy and still was, months later. I had, " let myself go". I was lucky he hadn't had an affair, and he hated every part of me.

Rina Teslica  18:30

Lovely.

Vicky  18:31

I believe that moments like that were helpful, oddly, for me. It made me think, hang on, this is my birthday. This is really upsetting for the baby too and Bob was ruining our first family holiday. I said that if he wasn't happy, let's end our relationship. Then, unexpectedly, he pushed me to the wall and put his hands around my throat. He squeezed until I couldn't breathe, and told me that, "I was so f**king entitled. He would decide when I could go". And then he paused. Then, he let go and I sort of fell to my knees as I had jelly knees. I managed to get to this strange little toilet, in the Airbnb, with this odd, little, unsafe, folding door. I locked myself in the toilet and sat in there. I had my phone in my pocket and I had this moment of clarity- a clear crystallisation in my mind that we had to get away. I wrote a note to myself, on my phone, sitting on this random loo, in this toilet. I wrote that there was no way that Xander was going to grow up in an environment where he thought that this was a 'normal' relationship. We were not safe. We needed to get out. I needed to have that moment of resolution. So, when we returned to Britain, from that point on, I started quietly confiding in my mum and close friends. However, the joy and reality of having a disabled child is there are priorities and I needed to be logical about them. My number one priority was look after our child. I knew that Xander needed to have diagnoses- he was not quite right. He needed help and he needed it urgently. I needed to get him the help, a diagnosis, treatment and then I needed to escape. I was pretty clear that it that might take a bit of time. So, in the meantime, I was just trying to keep out of Bob's way. Then, in the intervening period of trying to get a diagnosis, going backwards and forwards to doctors and pediatricians, I started viewing Bob in a different way- really noticing his patterns, and realising that, I believe, he was extremely unstable and volatile. Despite me trying to avoid him, his emotional and physical abuse was worsening, whenever I was around him. So, I just ended up staying away with Xander, in between his appointments, in Scotland, at friends' houses and my sister's house. When we were around, his surveillance became quite obsessive.

Lauren Fenton  21:26

Do you think he was feeling that you had changed in some way that you were?

Vicky  21:32

In hindsight, I think that maybe makes logical sense. I hadn't even realised. It sounds ludicrous to describe that we had a video camera in our house, which I thought was for security, for the front door. Then, it appeared in the lounge and he told me that it didn't work. I'm so bloody naive that I didn't question it but yes, it makes more sense as to why he was watching me. I spent a lot of time in the lounge, breastfeeding our small child, who was struggling to feed all the time. It was seemingly endless recording of me, without my permission. I guess I must have had phone calls with people in there, too. Maybe he did suspect.

Lauren Fenton  22:17

Calling your former self naive isn't fair. You weren't. You were in a situation where you had been controlled, gaslit you know, abused. And you had a small child- you were a new mum. You were dealing with all of the stuff that you were going through with Xander. I mean, the fact that you were so together to even logically have a list of priorities, as you just described, first I need to do this, then I need to do this- and this is my priority. In my mind, it's incredible. So, I don't know if it's useful for me to say but don't, please don't look back on your former self and say how ludicrous and naive you were because I think what you're describing is...

Rina Teslica  23:01

Incredibly strong. It's incomparable to the situations that we had, with just me being in hospital with Lua for seven months. I couldn't think of anything else but her, let alone having to deal with a multitude of very serious things going on in my life. So. I cannot imagine. I mean, I commend you to the nth degree, for being able to deal with it.

Vicky  23:28

I'm so bad with compliments, thank you. I'm struggling with them. I believe that, as a parent and especially as a parent of a disabled child, that your instinct is to just protect your small person. In a way, Xander gave me the clarity to almost zone-out some of the bullshit from Bob because none of it mattered. I had complete perspective on my baby needing me. I knew that there was something 'wrong' with his health. I hate saying there was something wrong with him, but my gut knew there was and I felt like I was trying to get the GP to listen, whilst Bob was just distracting with creepy, staged recordings. He'd sometimes come in with a weird smirk on his face, whilst watching the camera in his top pocket. Then, we'd have an odd conversation that was the polar opposite to a conversation we'd had a couple of days before, whilst he was still looking at his phone. It was apparent that I was being recorded, whilst thinking, I don't know what your game is, but I'm too busy looking after our small child to bother. What are you doing?

Rina Teslica  23:36

Did you ever point it out and ask, why are you recording me? What are you doing?

Vicky  24:49

Yes. It was in Great Ormond Street, when I asked him about it. I hadn't told him that I'd suspected, then had proof and I tried to speak to him about it, whilst safe, in hospital. And he went nuts, predictably. I believe that a person like that often reacts defensively by being offensive and making allegations back. In short, it was a precursor to his increasing Stalking behavior, over the next few years. At the time, I was still piecing the jigsaw pieces together and thought that maybe it was a one-off phase,  maybe it was just an off week. Maybe he was just being paranoid. Maybe there was a plethora of excuses for why it was happening. And maybe it would just stop, which is, my general optimism about life. Yes, anyway, back to Xander... His diagnoses took over my everything. I just kept appearing at those mother-baby groups- the weigh-ins and informing them that he wasn't doing any of the baby milestones that he should, for his months. I had that damn. 'What to expect when you're expecting' book.  I was told to wait, a bit longer-  wait another month, yet another week. So, I then started taking him to other mother and baby weigh-ins, in different locations, wondering if I'd get a different response, which I didn't. So, five months in, I finally got a diagnosis for him by taking him to my sister's pediatrician. My family were amazing and believed me. The pediatrician spent five minutes with him and said that he thought he was blind and he had severe hypotonia. Then, I found a pediatric ophthalmologist, who was amazing. She a friend of a friend, which is weird serendipity. The ophthalmologist said that his eyes worked, but she believed that he was blind, thus, there was potentially a problem with his brain-signalling. Therefore, I had to try and push for an MRI through the local NHS hospital. This then gave me the focus to just start hounding the pediatrician's receptionist, to get that MRI booked in. So I was repeatedly on the phone, trying to persuade them to give him an MRI. Then, Xander's epilepsy took over as his seizures began. I haven't discussed the relationship there, which probably says a lot. I was just so focused on Xander.

Lauren Fenton  27:28

How was the relationship at that time and Bob?

Vicky  27:33

If I'm being kind, I think he was in denial. I think it's hard for anyone to accept that the child you have in front of you. who maybe looks quite 'normal' isn't what you wanted them to be or your expectations. But still, to this day, I do believe there's some degree of denial with him, e.g. even after we'd escaped and left, he still did the domestic violence cliche of making loads of false claims and allegations about my care of Xander which, I believe, is part of that is choosing to believe them himself? And part is just being a controlling weirdo. I'm underplaying this. He's made 481 allegations to date, over the last few years, many of which are safeguarding false claims- you name it, I've apparently done it, none of which have come to anything because they're untrue and clearly just the rantings of someone who is bitter and who lost control. Anyhoo, Xander and I escaped, and we escaped with incredible support from domestic violence charities, agencies, police, and we skipped off into the sunset.  The point is for anyone listening, please learn from me. If you are in a miserable, toxic relationship with someone who's unkind and mean, and behaving in a disrespectful, abusive manner, please know that, I hate to say it, but the relationship will not get better. It worsens. There is no excuse for this behavior, you are not to blame. You just fell in love with the wrong person, who is an asshole.

Rina Teslica  29:17

Amen.

Vicky  29:19

You're stronger than you know. And you can absolutely get away from this. I promise you life is so much easier, fun, light and bright when you can just focus on your disabled child and yourself. Ideally, you'll be able to quietly plan a safe exit with help from professionals, and they will believe you. This is really important- controlling partners can become more volatile and unpredictable when they can sense that you're leaving. So please, plan it quietly with confidential, professional help. And also change your passwords, unlike me. In all seriousness, if things escalate and you're scared or you're in danger- call the police. I know I haven't met you but if this resonates, I'm wishing you so, so much strength and love. And you've got this. Next topic, please.

Lauren Fenton  30:15

Thank you, Vicky. I mean, sharing your story with so much honesty and all of that detail is obviously, incredibly hard. but to do it to support other people and to reach out to others who might be in a similar boat, just incredible, thank you. It's really important that we talk about these things, it's really important that we talk about it, in any case, but also with a mind to helping others.

Rina Teslica  30:46

So openly and honestly, it's just, I'm sure that there are listeners out there who will find this incredibly useful, and hopefully, take on some of your advice,

Vicky  30:57

Lessons, life lessons. It's a nice way of putting it. Thank you for having me.

Lauren Fenton  31:04

Well, we're not going to end it there, we have more questions...

Vicky  31:09

Intriguing... Moving on to the fairy tale that is single parenting... I sound really sarcastic saying that when I don't mean it like that. I really love single-parenting a disabled child. It's loads of fun.

Rina Teslica  31:33

Is it because you get to control everything, so it's your way or no way?

Vicky  31:37

We just have our own little groove going on. I think that when a relationship ends, quite often someone tries to remember who they were before. You have this new role in life. And likewise, when you have a child, you have a new role in life because you are suddenly a mother or father or having to care for this small person. And so, having those two things combined, with my favorite little person in the whole wide world, was incredibly fun and silly, figuring it out together and figuring out our little routine. I'm so incredibly grateful to have my partner in crime as my son. It's great. There's nothing I like more than, we live on top of a hill, so being in the car together, he's in the front seat because he has uncontrolled epilepsy- there are perks to this. So, we'll fly down that hill together and I just feel so exhilarated and alive each day. Seeing him next to me as my little copilot, in the car. It's absolutely wonderful. This is what life's about.

Lauren Fenton  31:43

What an image

Rina Teslica  32:22

I can just imagine.

Lauren Fenton  32:37

And does he love it?

Rina Teslica  32:39

Giggling, all the way.

Vicky  32:42

My car has really irritating beeps when it reverses, and he finds them hilarious, so I can't switch them off now. Yes, he loves it and cruising around London.

Lauren Fenton  33:02

It's interesting, what you say about actually you change and shift, and your focus changes, when you have a child. We all know that. And I guess with disability or SEN children in the mix, it can be more profound. Listening to your story, and not at all trying to compare it, but I've definitely changed a lot. I'm a completely different person, now,  10 years since I married my husband, and the empathy, the kind of perspective that having a kid with a disability brings- is bound to have a profound impact on you. I think I'm really lucky that, with Patrick, obviously, it's changed him too. And I think, fortunately, we've kind of changed in a similar way and, if anything, it's kind of brought us closer together and tightened that bond.

Vicky  33:53

That's beautiful

Lauren Fenton  33:54

I'm not pretending that it's all perfect. Relationships aren't.

Vicky  33:57

Doing that together is incredible. It's testament to who you both are as people.

Lauren Fenton  34:05

Well, I think it's a bit of luck as well, because I think it's about how you see the world. You know, and if you have similar views around the same kind of things, like therapy and education and interventions- that definitely helps because, as you know, there are so many decisions to make all the time. So yeah, I'm not pretending we've got the perfect marriage. I don't think such a thing exists. There are always challenges in any relationship, but definitely we feel stronger than ever, in a way, but I am desperate to hear about dating and how it is. Not that I'm in need of some tittle tattle. But....I haven't used the term 'tittle tattle' for a long time, but yes- being a single mum on the dating journey- how was that?

Vicky  35:04

I mean, what can I say? Just sexy, having a disabled child. I'm being really sarcastic.. No, I think, as with anything, it's really important just to work on yourself first-  be happy and content in who you are, and then, just don't have any pressure initially and speak your truth. I told everyone about my son obviously and about his disabilities, but on a first date- I probably wouldn't give the whole diagnosis story- it's a tad heavy. Fair enough, it's going to freak people out. It would freak me out if I was on a first date, although I'm probably quite hard to shock. For me, having a disabled child has actually been really helpful for teaching me how to set boundaries because I know what his boundaries are. I'm very clear on what his needs are. And as a result, he gave me lessons on what is and isn't important in a relationship and

Lauren Fenton  36:03

It's perspective again, isn't it?

Vicky  36:05

Dating has been kind of hilarious- maybe because I didn't care as much about the romance than maybe I would have when I was a teenager- when that romantic relationship was everything. Rather, I went in, already feeling like a whole person already, thank you.  I've got me and my son- We don't need anyone else but if I happen to meet someone nice, along the way. Great, cool. And that really does help to have that sense of humor when sometimes you had bad dates. I mean, this is just no secret. There are some weirdos out there. And I mean, weirdos in the weirdest possible way.

Lauren Fenton  36:44

Tell us a bad example, just to give us perspective

Vicky  36:46

One of the worst ever dates was a chap who looked quite normal. So, he was on Hinge and he had a profile picture of a dog. I thought that equals empathetic, nice human. Right, which would be what I would think. He had some good chat, initially and I thought I'd sifted out the nutty ones  We went to go and see a young astronomy photography exhibition, which was quite exciting, because I really wanted to go, yet he didn't seem to want to go, but I thought it was about paying. So, I paid. We wandered around it and he kept saying, "This is all a lie- the Big Bang, Astronomy- It's just a lie".  I clarified, "When you say it's a lie, astronomy is a lie? What?" He said. "Yeah, I mean, this is just utter nonsense. Do you think any of this is true? The stars are true? This black hole is true?" I said, " Well, yes, I do believe in the fundamentals of physics". And then, it just got weirder. He was mega-right wing, which is... each to their own. However, his views were racist and I called him on it. I was told I was a white apologist and not to worry, as he knew karate and worked with the home office, so would protect us

Lauren Fenton  38:05

He worked for the home office? That's the scariest thing of all.

Rina Teslica  38:08

You shouldn't be a racist in that role.

Vicky  38:10

Why on Earth and how was he in that job? 

Lauren Fenton  38:12

Oh my God.

Vicky  38:15

Needless to say, I decided in the first five minutes, that he's never getting anywhere near my baby but said, "I'm sure you're a really nice person. However, your views on life are so very different to mine that we were never going to fit." He said, "What do you mean?  I think we're getting on really well" I said, " I think you're massively right-wing and I'm not. Now I'm about to go and watch the Eurovision Song Contest with my wonderfully gay friend tonight, knowing that he was also homophobic, obviously.  He said. "No, I don't think I am at all". Oh, well. Good luck with life then- byeee. So he was my worst date because I found his own views so distinctly different to mine. I mean, God knows what his views would have been on Eugenics. I do believe that as a parent of a child with special needs, you are given this wonderful gift of having a really wonderful bullshit-ometer. Or you just don't suffer fools gladly as, maybe you would have, if you weren't in this situation, because you're so used to- I want to say fighting for your child, but having perspective in life about what's important and what's not. And so, when you're on a date with someone, you can immediately see if it's all about them and their ego or there's no empathy or they're not inherently a kind person or for whatever reason, they're dealing with their own trauma, because, quite frankly, I just don't have time for because I've got my own little disabled monster who will give me dramas on a regular basis. I don't need someone else's crap

Rina Teslica  39:51

Or Mummy and Daddy issues.

Vicky  39:53

It's that's really liberating, to realise that, and who knew that the silver lining of having a disabled child is that it helps you to quickly sift through who is worthy and who isn't worthy to be near me and then, eventually, to be near him too.

Rina Teslica  40:10

I have a question actually that's quite interesting. Have you ever introduced Xander to somebody and he, because I feel like our kids are so much more in tune with like the vibe of a person, like Lua will only go to- she can kind of sift through those who are not very nice and she will ignore and be very cautious. And then to people who are really kind, she will walk over and hold your hand and...

Lauren Fenton  40:39

She held my hand the other day! I'm loving that! Did you just say that for me?

Rina Teslica  40:39

You are Lua-approved, But she's done this so often and sometimes, for example, like even with doctors, and ,you know, she can be very.. she's so social but yeah, has Xander ever not liked somebody that you've introduced him to?

Vicky  40:59

All the time. I think you have a really great point there. My child is nonverbal and his ability to sense someone's inherent goodness is...he's wonderful at it. There are some people that he just does not like and he's such a mellow little guy that I'll politely laugh over it, whilst clocking that my child doesn't like you

Rina Teslica  41:23

So won't see you again. 

Vicky  41:25

I mean, clearly you'll be more diplomatic in the way that it's said.

Rina Teslica  41:27

Of course.

Vicky  41:27

"It's not you, it's me, the timing is wrong". Whatever the excuse is- my child doesn't like you, so quite frankly, no- you'll never come through my door ever again.

Rina Teslica  41:38

What's he done?

Lauren Fenton  41:39

What a filter.

Vicky  41:40

He just screamed and cried, when I came home once, and was with a babysitter. That poor chap was quite frightened, so got rid of him. He's done it during sexy times, as well. It was a guy who I was going out with for a few months. He was really nice, I thought laid-back, Canadian chap, and he seemed really empathetic towards Xander's needs. We had one particular night where, urgh, we'd just had this really cringy discussion about him staying over with Xander at home, for the first time. And I had just been easy breezy about it, saying, "Hey., there's no pressure, I'm on this single parenting-thing. I don't expect anything off you. I don't even know why I said this. So, we came home to my bedroom, and Xander just started screaming and screaming, which I guess- he didn't like the sound of his voice? Or maybe he didn't like the... He's very perceptive and can hear the tone of how I am with someone too. So maybe, inherently... Or maybe I'm just reading too much into it. Maybe he was just having a bad night.

Rina Teslica  42:54

Either way, no, no, he knew that he wasn't the right one.

Vicky  42:57

So he screamed and screamed. He gets so upset and anxious sometimes that he can't breathe properly, which then meant he couldn't swallow his own saliva and then we had blue lips, which led to me being panicked. So, in short, I burst through the bedroom door to this chap, after I just couldn't calm Xander down, and said, "Right, that's it- We've gone to get up, get dressed, we're going to A&E". And this poor guy, got up and put his clothes on. Then, by the time I had the bag packed, Xander had fallen asleep. And I think it was an interesting moment of realizing that he was just inappropriate fit. He wasn't going to work with us- he's the wrong vibe. Xander didn't like him. So you know what, goodbye- next...

Rina Teslica  43:47

And that leads us nicely on to your current relationship. So, Xander clearly likes him. Give us a little bit of background. How did you meet? How did it happen?

Vicky  43:59

I have a lovely boyfriend. He is very worthy. We met in Lockdown.   It was a Disabled Parent’s dream. I mean, the Zoom- dating element- don't get me wrong. Being locked up and Shielding was not quite so dreamy, especially with uncontrolled epilepsy. Gosh.

Anyway, so I met my lovely boyfriend after I'd had a Friday night Zoom chat with my friends. I kept messaging him to delay, saying that he'd have to wait a bit longer because I was having a nice time with my friends. I just couldn't be bothered. I was wearing pyjama bottoms, had a glass of wine on the sofa, then, switched him on Zoom and just met the loveliest human being. He's really empathetic, kind, honest, open, communicative, interested in life and I wasn't expecting him to be there. I think we were both a bit taken aback by the conversation we had, and hit it off from the very beginning. It took a long time for me to introduce him to Xander. I wanted to be sure that he was suitable for King Xander to approve of and they get on like a house on fire. It's really. I genuinely think that Xander thinks he's his friend, who comes round to play with him and he can get a bit difficult at bedtime doing, as he's doing that, 'No, I want I want to hang out with my friend, now'. He's got him wrapped around his finger.  That's so nice. See, there's like a silver lining. You went through the shit and then you found somebody who is worthy of you and worthy Xander. I think is worth saying again- if you want someone that's cool. I had definitely come to a place that I didn't need anyone. For me, dating was actually quite an escapist little thing to do for an hour. Check out an app and have someone write nice things to me. If I'd had a really shitty day of epilepsy, particularly in Lockdown- it was just so full-on, caring for such a wonderful child, but his needs are profound.

Rina Teslica  46:07

So basically, instead of you at the end of the day, getting into a bath and reading a book, you jump on Hinge and

Vicky  46:14

Just 10 minutes or so of messaging.  I enjoyed the Zoom dates, particularly, as it was good fun to meet some interesting people without ever having to leave your house. No need for a babysitter, putting on makeup, trekking all the way into town, to meet someone who's probably going to be a bit of a muppet. I mean, nice enough, but I'd rather stay home with my child to be honest. So, the tittle tattle...

Lauren Fenton  46:52

Here we go.

Vicky  46:53

My first ever post-marriage sex was with someone I had known for a very long time. He was a lovely guy. Xander was in bed. It wasn't actually particularly planned. He came over, we had dinner, wine, one thing led to another and we had sex under the stars, on the roof because I had a roof terrace. It was very sexy, apart from the baby monitor I had right next to his head, the entire time as I was worried that my child would have an epileptic seizure. The guy just kind of dealt with it. I mean, I say 'poor guy'. He did pretty well. I have to I have to say,

Rina Teslica  47:37

He got sleep with you.

Vicky  47:38

Oh helloooo.  It must have been quite off-putting with me... having Marvin Gaye on and...

Lauren Fenton  47:47

You had Marvin Gaye on?

Vicky  47:47

I mean, who doesn't? Then, wait, Oh, what was that? Was it a seizure? "Oh, hang on. Keep that thought- I'll be right back..." I ran downstairs, checked he wasn't having a seizure, put him in the recovery position, sang him a song, all visible on the baby monitor. All is good. Said, "Mummy loves you", then ran back up.... "So heeeeey". It was so awful, but taught me some valuable lessons on how to not date with a child with uncontrolled epilepsy. Just yeah. Don't have sex anywhere near them. Afterwards, that night, I left him just to sleep in the bed by himself as I chose to sleep next to my baby, because he's my priority.

Lauren Fenton  48:52

What were you saying about having time for a bath or a zoom date as your Respite, for want of a better term after a difficult day of seizures? The term gets overused, but that's sort of self care that I guess is escaping the identity of carer, mum, and that role that you're constantly playing and having some time for you? And I guess that's true, in other relationships in general. Yeah, absolutely. You don't know it's about how do you make the time and the space for your relationship as a couple as opposed to just parents? You know, how do you do that right now?

Rina Teslica  49:38

I mean, I think back to COVID and when Arb's was working from home, we spent so much time together and we realized that, for like a year, we didn't argue once. And we realized that we argue more when we don't see each other. And we argue less when we spend more time together. So, it really prompted us to rethink how we spend time together. And he began to prioritize days off. So, now he'll have a day off during the week when Lua is at school, just so that we can spend the day together ,being ourselves and doing silly things, like we went to play mini golf, last week. So, we try and do this once a week, obviously, some days, we're not we'll do something really mundane or go shopping or whatever. But usually, we'll try and do something fun and interesting, because it's the only time that we're not a carer or mum, and he's not a bank manager. And work essentially, it's just made the relationship so much more fun. After a while, we've been together seven years now, it's like you start to lose the fight, especially if you don't invest in a relationship. And so, it's bringing back that sort of fun young. Yeah. We try to not talk about Lua as well. So, for that six hours she was at school, we have to just not talk about it. Not always, especially if she's like, done something really cute, or like in the morning. And she's you know, so we'll talk about that. And then sometimes I do miss her. So I will be sitting having lunch, and I'll go through picture and say, "It's really cute here, look". But we try. It's a way.

Lauren Fenton  51:24

And I think sometimes you need that time to to chat with a bit of distance as well, because he's actually, getting you. There are big decisions and big topics to talk about at times. And actually, the day to day doesn't allow space for that. We find that when we go out for dinner or, you know, our birthday recently. We have the same birthday. Yes. It's f**king irritating. The one day I could have had and I must share it with you.... Anyway, so we went out for lunch, and we did find that we were talking about the kids loads at the time when we're having lunch. But that's, that's okay. That's life. That's a common thread, at times. One thing that we do is, we are very lucky to both have quite large and supportive families. It's an Irish family. There used to be a thing when we'd go to Ireland and the family would say, please go away for and I will look after the kids. I love our family. Yeah, his brother and his sister both used to- they've got grown up kids. Now, they were really keen that we did that. And unfortunately, we were very obliging. Of course, one would have a go. So, then the next time we were over, the other one would ever get a turn. It's always been really helpful to have that like space because, if it's an hour here or there, or it's an evening, when you just literally are exhausted, and you've got all your kind of stresses from the day, it's, it's not quality time in the same way. So I think removing yourself from the parenting roles is, on a day to day, is really important. If you can do it. I know not everyone can. And we're really lucky to have that. But yet it has made a difference. And of course, I must mention my mum, my mum looks after them as well. Which is yeah, yes. Amazing. I'm so grateful for that.

Vicky  53:27

It's, to me, it's similar to the self care discussion that people with SEN kids often struggle with- just finding that time for you. And your point from earlier as well about making time for yourself is so essential. Your child can pick that up from you and similarly, one's relationship and putting in the time and effort- can be exhausting at the end of the day. But, even if it is just a glass of wine at the end of the day and talking about something completely different, or watching a TV boxset. It's essential to play that different role rather than just be the parent caregiver at all times. Because it's heavy stuff we have to deal with. You need to have that play, that balance to keep seeing the other person and, also to enjoy each other's relationship, remembering the other side of the person.

Rina Teslica  54:24

It's true, I think for us, because Lua was in hospital for so long in the beginning, and we were so we were both quite young and first child and we were just thrown into this, like friggin deep end of a deep, deep, deep pool. We had no nobody, nobody in our position and nobody understood. So, we just clung on to each other. And my mom at the time was just saying, you really need to invest in your relationship in this moment because you too are going through something so big and dramatic, that Lua will pick up on what's going on between you two, so you two really need to band together and work on each other to help Lua to get to a place where she needs to go. And I really, really took that on board. So I think, had we not had Lua And with all the disabilities, I don't think we would be as strong as of a couple as we are because of her. So I'm in a really weird, crazy way, grateful that we went through everything, because I can literally read his mind and he can read. So yeah, very grateful.

Lauren Fenton  55:34

It's so true that I think that shared understanding is incredibly valuable. Or bonding. Outstanding. It's not always going to be the case. And that's, as you've kind of outlined in your story, Vicky, everyone has different experiences and relationships, and they're not all going to be that.

Vicky  55:59

Well, I think it's, it's also worth stating that when there isn't that romantic-other person to share with, there is still a wider-extended network. And I'm so grateful that I have one, with some of my old school friends and some nights, I'd call up and download to them as to what just happened, with his health and being able to talk through what's happening in your life, and the decisions you need to make on behalf of your child and their medical needs- is so valuable, irrespective of where that that conversation comes from. It could be with my school friends, medical providers- I really appreciate those relationships in a way that I probably didn't, before having him. The wider network and the dependency in asking for help from other people is vulnerable, but really rewarding when you get it.

Lauren Fenton  56:54

It's so important. Yeah, so that you know, we, I guess Rina and I have described quite this kind of traditional, yes, parenting style, I guess it maybe more other than traditional, but I'd say we're fortunate and lucky situations that we're in. But yeah, your family, your support network is what you want it to be. It doesn't need to come from that. And I think that's, that also goes back to what you were saying about, you weren't looking for a relationship, you were happy with your most important man in your life. And being a single parent, you didn't need

Rina Teslica  57:31

that external person to come and support you. You were doing it all by yourself. And I feel isn't that thing where when you're not looking? You find it? And that's what's happened here. I think it's when you're so secure in yourself that actually that's when you're ready to have somebody else kind of come in. Yeah.  Another question actually, how much does your partner have a say in how you kind of parent Xander? And the decisions that you have to make? Especially being a SEN mum? Does he have a say? Or do you ever do you ever ask for his opinion? Or is it all so you?

Vicky  58:08

Yeah, I definitely ask for his opinion and I really value and respect his view. He might be relatively new to this relationship, being a couple of years in, but he understands my child and he understands me and he's very logical and very calm in the face of, what are quite  often, extreme emergencies. He can make paramedics laugh like I've never seen. I think he feels like it's his mission to make them laugh. But I am really grateful for for his views but he's very respectful of my boundaries and he will be the first to say, well, this is your call. What do you think? I'm here if you want to talk about it, and I can give you advice or I can just listen, what would you like? And having, even that self awareness is... I'm so grateful.

Lauren Fenton  59:01

That sounds wonderful but I'm not surprised that somebody wonderful is attracted to you. I have to say, I mean, after all the trauma that you've been through, how are you such a nice person? I mean, I know that's not helpful but it would be so easy to be bitter.

Vicky  59:24

You have a choice to choose. It's so cheesy- you choose love or you choose that bitterness, forevermore. My life didn't go the way I thought I was going to but whose life does? And this is part of the insane roller coaster of having a disabled child. You need to.. I am about to paraphrase Roman Keating..., you need to ride the rollercoaster.

Rina Teslica  59:47

Life is a rollercoaster, you just got to ride it.

Vicky  59:49

But it's true.

Rina Teslica  1:00:05

Okay, so i just sang it in an off-key but you have a choice.

Vicky  1:00:07

The last thing linked to this, that's worth saying is, I don't think we talk about these good news stories enough. I think as an SEN parent, we're all clear- we're knackered, at the end of the day, and we'll exchange stories on the grumbles. Every child with a similar condition- we all have similar grumbles and I love that community. I love that validation. But actually, in amongst that, I'm not the only story of someone who's found someone incredibly lovely to be their partner, as a result of or as a by-product of having a disabled child or just because they were going to come into my life anyway, who knows. But these stories are really not that few and far between at all- it is really beautiful, to see random people I've never met on our Instagram community, hearing about the empathetic, kind human beings, who've come into their lives and want to be part of their their child's journey and their journey and are honored to be playing some role, no matter how small that needs to be celebrated that there are massive upsides to this.  100%. So Vicky, as we do with every guest who comes on our show, we asked them for their hashtag awkward. So have you had any awkward encounters with you and your disabled child? Why yes, yes, I have. You know, one of the more recent ones was, I was in a restaurant with my boyfriend and Xander in his wheelchair, and we'd had with a nice meal. My son was struggling to eat because he's shortly going to be moved to tube feeding. He also looks disabled. Either way. We had a really lovely meal. And then it was kind of ruined, when the waiter asked my boyfriend, like, what's wrong with your son? My boyfriend is really open, so said, he's got a brain malformation, he has epilepsy and he's blind. The chap said that he had a cure. So £8000 pounds would buy us special water- it was some kind of alkalized water and all Xander needed to do was drink it, every day. And it's not a pyramid scheme.

Rina Teslica  1:02:39

So relieved.

Vicky  1:02:41

Yeah, that was my latest one.

Lauren Fenton  1:02:43

Jesus. What did you say?

Vicky  1:02:46

Awesome boyfriend said, You know what? I'm gonna take your number. Yeah, and tell me, what was your name again? Then  we made a complaint and asked him not to say such things to people with disabilities in the future.

Lauren Fenton  1:03:02

Boyfriend is really lovely. Very smart move. Thank you so much, Vicky, for coming on the podcast. It really means so much to us. You have been brilliant as when you would be. Thank you for sharing your story or the the highs and the lows. Thank you. Anyone else to say thank you so much. Love you. But before we go, one last last last thing, what is your f**king normal?

Vicky  1:03:33

My f**king normal is at all times- I live with approximately five really bright, shiny colored helium balloons in my lounge, because my son loves helium balloons. And they're always at various stages of inflatedness. So, sometimes they can scrape along the ceiling and they follow you, from room to room. And that's my f**king normal.

Lauren Fenton  1:04:00

Beautiful. Lovely. Thank you. Thank you.

Vicky  1:04:04

They are quite creepy at night.

Lauren Fenton  1:04:10

Thank you so much for listening to the f**king normal podcast. We love making this podcast. Yes, we do. We are part of a much bigger team almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences.

Rina Teslica  1:04:31

So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at FkingNormalpodcast.com That's f k ing normal podcast.com you can join us on Facebook and on Instagram at fkingnormal_podcast. That's f king normal underscore podcast. You can get all the links and more information in the show notes below.

Lauren Fenton  1:04:55

So thanks so much for listening all the way to the end. We'll see you next time.