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.
