Life as a social outcast | Samuel Wilson

EPISODE TRANSCRIPT

Mark

Hello, and welcome to episode 11 of Neuroshambles. Welcome back, Neuoshamblers. Thank you so much for being here. I hope you had a a good half term. I was going to say good half term. Hope you managed to get through half term okay. Well done for continuing to be here after that. If you're half term was anything as fractious as mine, then it's taken quite an effort, but well done. Uh in a moment we're going to be meeting a new guest. We'll have a brand new topic of the week And we'll also be having the old classics Neurodiversity Champions, Tiny Epic Wins, and some what the flip moments as well. So that's all to look forward to. I'll stop prattling and let's crack on.

SECTION INTRO

Meet the guest.

Mark

Okay, so for a first on Neuroshambles, I have a new guest who came to my attention just by sending me an email and he said some lovely things about the podcast, and I thought he sounded like an excellent fellow. So I asked him to come on, and surprisingly, he said yes. So I'm delighted to welcome aboard Samuel Wilson

Samuel

Hello, Mark. Yeah, delighted to be here. Thank you for having me on.

Mark

No, not a problem at all. Yeah, I you had some interesting things to say about the topic of this week you actually suggested the topic for this Week, so I thought it's only fair to get you on to actually offer your take on it. But before we get on to the topic of the week, just tell us a little bit about your particular setup.

Samuel

Yeah, sure. So I've got I've got two little people in my life, uh an eight-year-old daughter and a four-year-old son Both of them are premature, which has an impact or hopefully only affects them on the early stage of life, but the long term view is still a bit unknown. So our daughter was born pretty early at twenty eight weeks, so three months early. Yeah, and our son was born at 32 weeks, so yeah, about two months early. So yeah, lots of experience with neonatal care and Things like that. I think our son is neurotypical. And we've got a feeling...

Mark

Yeah, yeah, exactly.

Samuel

He's not, is he? He's never going to be. No way. Yeah, I so far I think he is, but there's a definite definite let's call it a scent of A D D in the air with him.

Mark

Okay, okay.

Samuel

It is too soon to tell though.

SEECTION INTRO

Kids are all bonkers at this age.

Samuel

Yeah, boys at four-year-old, right? I mean, every boy at four-year-old exhibits ADD, ADHD. It's just impossible to diagnose that.

Mark

Yeah, but just don't count your chickens. I'll say there.

Samuel

I I won't know.

Mark

I've learned from an early age, yeah, my chickens are fucked, so it's uh yeah, it's fine.

Samuel

It's absolutely fine. Um, and yeah, so our daughter, she's now eight. Uh, she's got a number of diagnoses, so uh, cerebral palsy, which A big physical diagnosis.

Mark

Right.

Samuel

CVI, which is cerebral visual impairment. So, if any of your listeners don't know about that, it's quite a complex thing that in terms of how someone processes information. So her field of vision is very limited to what she can see and also she can't process fast moving object. So things like crossing a road is never going to be something she'll ever do because she won't get processed information. And weirdly enough, the the how C V I manifests itself is very similar to autism in kids So it's quite hard with kids with CVI to get an autism diagnosis. So on that point, which flowed in beautifully, what a segue. I didn't even plan that one. We did take her for an autism diagnosis three years ago. but they said she didn't meet the threshold.

Mark

But then literally last month her school have put her forward from autism assessment 'cause they're like, Yeah, we're pretty sure right, so did could you spoken to the school about it previously and Sort of said, keep your eye out.

Samuel

Yeah, the school have been really on board. Her EHCP is super robust, her INAs are on the case, all of that kind of thing. So So, yeah, I think we're going to go down the road and check. And our gut feel is yes, but if it is, it is, it isn't. What else is going on in our household? Yes, a sensory processing disorder

Mark

Okay.

Samuel

Precocious puberty. I think that's it. That's enough, to be honest. That'll do.

Mark

Yeah, that's it. Yeah, there's there's a truly neuroshambolic household you've got to go.

Samuel

Oh my god, yeah. It it really is. It really is. And like, I don't know how relevant this is to the conversation, but My my wife is Argentinian and she's very on the case and very structured in her day-to-day life. as you can imagine, our kids are not they're not following that kind of level of like organization. So yeah, there's some disparities occurring there, which is quite interesting. Yeah, neuroshembolic is definitely the right term I would apply to that for sure.

Mark

Well, thanks for telling us about your setup. Let's crack on with the topic of the week.

SEECTION INTRO

What's the topic of the week?

Mark

So so the the the reason I got you on to this show is because you emailed me uh with a suggestion for the topic of the week and it sort of landed in my own box. It The perfect time. So, you you email me, and if you don't mind me telling people the snippet of your email, you said I thought a good I thought a good topic to cover off would be that of ostracization both from our kids' view in terms of how they get excluded from more and more social activities with their classmates, but also from a parent carer side. Not sure about you. But sometimes I feel like the leper of seven dials in Brighton, which struck a chord with me in a way as well, because it does feel sometimes that we sort of wander through the world not really fully being included in it in a lot of way, in a world that is built for neurotypicals. Totally. even though we're neurotypicals ourselves. There are a lot of conversations and a lot of experiences that we're isolated from. And I'm particularly this week, Tam is away. Tam has been away for nearly two weeks now. So I'm so I am solo parenting.

Samuel

God, I feel so solo parenting.

Mark

And one the the first week of that was half term. Now in in Tam's defense, I had gone away for a week before that for work. So it's not like it's all on me. I mean, I've had my time to I've had my time to relax. Work is not necessarily relaxing, but it's definitely.

Samuel

But you'll take it as a break.

Mark

Oh my God, definitely. For sure. For sure. So when your email came in, it was this week. It was like, yeah, I've rarely felt so lonely in my own household. So, firstly, I wanted to get you on to talk about the topic you suggested. And secondly, just to have a chat with a grown-up. It's been so long.

Samuel

I feel that. Yep, absolutely. Let's do it. Let's dive into all of that stuff Sounds good.

Mark

Oh so one of the things I wanted to say first look at is is is what leads to this sense of social isolation. And not I'm sure not everyone feels it, but I think a a a lot of people in um with a ascend family do feel it in to a degree. And I think firstly we need to start by saying having kids it does lead to a a degree of socialized Isolation, certainly at the start, when your world sort of turns inward, you stop looking outward to all like all the fun stuff you used to do, going out with friends and like just being spontaneous and improvising. You can't do that anymore when you have kids.

Samuel

That's I mean, that like I had a conversation with my wife on this, like, very, very recently, and it's the spontaneity I miss. The ability just to be like, fuck, let's go do that. Let's go there. All that's gone in your life. Everything is scripted. Everything is organized. Everything is planned Yeah, I think you're completely right. Like when you have a kid, that that throws everything out of whack. But I would say in the in the the neurotypical world, right, it it's geared up to kind of create these social bubbles for people who've just had kids, you know, there's a million baby groups that you could have to go to and and, you know, drop in and do all of that. And I remember when our daughter was born, and obviously we went through like a really intense time in in NICU, sorry, Neonato Intensive Care Unit, which um which is really tough. And then going to a baby group after that, it was like No, no, no, we're on another level here. Doesn't it doesn't work? I'm out of this.

Mark

Right, okay.

Samuel

Yeah, so instantly, you're kind of like. working your own bubble rather than being part of the the call it the typical bubbles that exist for new parents.

Mark

Yeah, that's the thing, isn't it? Because it's such a different experience. And I think, yeah, you're right to say that that that parents of neurotypical kids tend to find their own friendship circle with other parents. And that like you say, that starts out in kind of baby groups and then nursery and then and then school and a lot of that sort of that that commonality of experience is really important of going, Oh, what what stage is your kid at? Oh, my kid's got their first tooth, you know, my kids Had their first fruit shoot. Whatever it is, it's like you know, the big landmarks in their life, right?

Samuel

Yeah, yeah. Oh, bless them.

Mark

Let's get him down from the curtains, shall we? But our children have a slightly different time line. So things don't happen in the same way. Those little landmarks don't happen Happen in the same way. Those things that you're expecting are timed differently. So, already from an early age, there's a disparity between your experiences, which makes it a little bit more difficult to connect, probably even more so in your situation. Because of what you went through with the sort of premature birth? Yeah, I think so.

Samuel

And I think the physical aspect is a big degree in our life, right? So, everything, like, I would say the majority of our life is geared towards. logistics are key. It's like getting from A to B is a massive consideration.

Mark

Yeah.

Samuel

And that and that makes a huge a huge deal. And obviously that affects every possible form of social interaction at school. Like the you know, we we live in an area we're really close to the school where our daughter goes, she's in mainstream school. And there's lots of um Lots of her classmates live in the area as well. And you can see every day after school that the classmates, you know, they'll go to someone else's house, just do that. It's like, yeah, we can't do that. That doesn't work. And it's like. You kind of get to the point where you're like, it's okay. I wish it wasn't the case, but we're kind of okay with that. Is that from an accessibility angle Yeah, exactly, yeah. So it's and I I yeah, I've again, I've been thinking about this a lot since I said I was gonna come on this podcast. And I think there's also a lot of guilt thrown into that as well, right? Because you you yourself and and me as a as a parent carer, you You carry a lot of shit on your shoulders, right? In terms of responsibilities, your kid. And I feel personally like almost guilty to kind of throw some of that shit at someone el

Mark

And be like, okay. Yeah. Yeah. Yeah.

Samuel

And it's like, okay, if you're going to look after my kid, you know, you need to know this, you need to know this, you have to do this, you have to do this. And it's It's like, you know what? I firstly, I don't want to throw that on you, cause I feel guilty about it, but also. I'm too fucking tired to explain it all to you. It's just like I can't be bothered. Like, I just can't be bothered.

Mark

You need to write a list of instructions. Just like a user manual and go, read that and then come back to me. If you read that, we're still on board. Let's talk.

Samuel

Yeah, exactly. Page 23, read that. We're cool. We're all good. We're all good. And like sign disclaimers and all that sort of things.

Mark

Yeah. Yes, and and uh similarly, my my kids don't make friends as easily. And and a lot of the friendships that you make in in that uh sense um are th through through through the parents of your kids' friends

Samuel

Totally.

Mark

So they end up like playing in a playground and you're standing there thinking, Well, I might as well talk to this person. And then you, you know, you are kind of bonded by that and you get to know them. and then you will you know you'll do communal activities with them and and that will be a thing. But because my kids don't really make friends that easily um, or crucially, for a very l kind of long amount of time, there's only sort of a handful that are still around now. Um you you don't really make those those friendships in the same way.

Samuel

Absolutely, yeah, like a hundred percent agree. With that, it's it's it's really, yeah, it's of course it's really painful to see. And my daughter has, she really annoyed me, she had like a bestie, like the best girl in the fucking world who was her best friend and her parents had to they moved house so she's at a different school now which is like heartbreaking but they're still yeah best of friends okay that's good yeah she's a neurotypical girl and She's just the nicest human being on earth. And for some reason, on the some level, which I can't quite like identify exactly what that level is, they've just bonded massively.

Mark

And it's that's interesting

Samuel

Yeah, it's absolutely beautiful. And it's like, okay, you guys are bestie. Let's let's maintain that relationship regardless of distance. But yeah, at school, there's no close relationships. There's acquaintances and you know, I might do a playground dance activity with that person or drawing with that, but there's no super, super close bonds. And yeah, if the kids don't have that, you don't have that with the parents, right?

Mark

Because there ultimately that's where this feeling, you know, as a parent of being slightly socially isolated comes in a little bit. Like you you there there are loads of communal school activities. That again bring parents together.

Samuel

And I'm just like, no, that's not us. No, it's just like it's like looking at the list. It's like Just red cross every single box here. It's like, oh, cool, it's school disco night. Yeah, not happening, cool. School film night. No, she's not gonna do that. No, not gonna work. No, it's like, yeah. And I did it once.

Mark

I tried it. I went on a class camping trip with Jay. I was like, right. He likes camping. I like camping. It'd be like, great. I could get to kind of meet the parents. But I'm so fucking on edge that I can't relax. It's all the other parents getting pissed by the campfire, and I am constantly going, Where is he? Where where's he gone? and he's like over in the next field somewh

Samuel

And everyone's like, Mark, how are you doing? Yeah, no, good, hold on.

Mark

I'll just look at it. Yeah, I'll let you know.

Samuel

Yeah, that's exactly that. You can't just switch off and just enjoy the moment that you are with other adults in that situ it becomes really, really difficult to do that. And I've got a a close friend of mine I was talking to the other day and he said that he recently he went abroad with some other dads from school. They went on like a boys' weekend away And that kind of blew my mind. I was like, but how the fuck does that happen? Like, how does that come about? Like, I just couldn't even begin to think about that situation. Can you imagine raising that conversation? At the school games.

Mark

Hey guys, do you fancy going to Malaga?

Samuel

Sorry, who are you? Yeah, actually.

Mark

Yeah, you don't really have that.

Samuel

Not at all.

Mark

It's interesting because you mentioned earlier, like, you use the word, it's like your little bubble, and it is a little bit like lockdown, isn't it? We have our own little social bubble, and very rarely do we sort of stray outside that. We're kind of locked down in our own way, really. And it's by choice a lot of the time as well. Um, but we we have our own little kind of um circle of friends that w that we kind of interact with, but rarely do kind of new people come into that circle

Samuel

Absol totally, yeah. It's it's rare that someone has the um yeah, the the luck, shall we say, to enter enter that private that private audience. Um and I think it's it it's it's real quality, not quantity With friendship groups at this stage, right? Because like everyone knows kids and they've got like they're the most popular kid, they've got a medium friend, parents, like yada yada, lots of social friends, but I would take one, two super close friends over ten, you know, catch up, whatever friends.

Mark

Those friends have been forged in ste Haven't they?

Samuel

Oh my god, are we talking? Yeah, Gandalf's rod. They're there, absolutely, absolutely thick and thin, and they are like absolute gold dust.

Mark

And it is like you, you. really like if you if yeah you really value those friendships when they're that when they've you know they've seen the they've seen the bumpy bits and they're still here And that's so lovely. And you know, and it is like you're saying, it's staggering sometimes that neurotypicals Hang around because it's not easy, is it? We're not easy people to be around.

Samuel

We're really not. And like everything we've been through with our kids, it's like it's exacerbated I don't want to call it the worst in us, but definitely the most trickier parts in us. So, yeah, it's like anyone who hangs around in that, it's like Fucking hats off to you, my son. That's great.

Mark

That's really good.

Samuel

Yeah, yeah, thanks, guys.

Mark

Another area that I feel uh slight uh social isolation is The WhatsApp groups at school. Again, it's school related. Because I've got three kids, right? So I'm on all the WhatsApp groups.

Samuel

You've got them muted, right?

Mark

They're all muted. Come on, let's be honest. No, sometimes I do, but like, yeah, I don't know, actually. Maybe that but that's more isolating, isn't it? Knowing that you look you look at the it's like there's been 412 notifications, like oh, I've missed out on all of that

Samuel

Yeah, I'll just look at the last one. Is that relevant? No, then it's probably fine.

Mark

It's never relevant, is it, Sam? Let's face it.

Samuel

Never, never at all. There's usually like it starts off someone asking Does anyone know if it's an inset day next week? And then there's about fifty messages of people being like, Oh my god, I didn't know there was an inset day. So you know that you can see one message, skip fifty, and you'll basically kind of catch up with everything else. But But yeah, most of the stuff I think that what happens in the WhatsApp group is just so hard for anyone with a parent of a kid with any kind of neuro or physical disability to get involved with because it's just so not applicable to you It's just about, let's have this meet up here. Let's go to the park. Yeah, not going to work for us. All of that stuff. And it's like, that's why you get to a point where you're just like, I I'm just going to step away from it because I don't need to be reminded daily about how little my kid is involved in the norm, I hate the word, but in the typical daily life. Of your kids.

Mark

Yeah, it is. It's a reminder of what they're missing out on, I guess. And it's not, it's not, you know, I'm reluctant to step away. In case just one day someone goes, Hey, I think my kid might be autistic. It's like, Welcome aboard. Yeah, let's chat, my friends.

Samuel

Yeah, yeah, exactly.

Mark

Let's me and you start a separate WhatsApp group. Yeah, fuck the rest of the stuff.

Samuel

I've seen that happen in our school.

Mark

There's been factions.

Samuel

Oh my God. Yeah, like the first group in our reception. It got it didn't come to physical blows. It got to a point where the school had to intervene. It got feisty, and it was really, yeah, I'm here for all of this.

Mark

This is the school put parents in detention

Samuel

Although they had they oh, that would have been really good. But they actually had to email every parent to remind them of the conduct that should be conducted on external messaging groups at school. Okay, yeah.

Mark

I don't really I don't really involve myself in that. There's been, you know, politics and people sort of getting snippy with each other and that, but I'm I'm not really present there, which is in a yeah, in its own way a bit weird. I'm just like this creepy stalker. Have you got anything to say about this box? No, I just like lurking.

Samuel

I just like watching you guys have a good time.

Mark

Yeah. I guess the reason I don't leave it is because I have a bit of a a FOMO, you know, like a fear of missing out. Like, what if something really cool? What if I need to know that? I very rarely do. But I like to lo know what's going on, I guess, to a degree. And I get this w a drop off as well and pick up at the school gates It feels like all the other parents are really good mates with each other.

Samuel

Do you get all the time? Like, all the time. Like, yeah. And you're like, hi, guys. You try and make an effort to be sociable, but you're being as sociable as you can within the confines of your day-to-day life, right? Like taking your kid in and and dealing with whatever meltdown or situation is happening there. And it's like, I just can't be that like, you know, you know, roses and sunshine sociable moment that you Kind of want to have with your neurotypical kid, that doesn't exist in my world. And as much as we might get on, right, we might be really compatible human beings But we're just never going to find that out 'cause we're never gonna find that moment to explore that. It's having that space, isn't it, to do that?

Mark

Because like I can't relax until the moment my kids are in the school. They're like, Great, okay, now they're being cared for by the system. For a little bit, and then I can breathe. But I can't relax waiting to go in because you see, like, other kids will see their friends and they'll run over and go, Hey, you know, and they'll like chat and they'll play, and the parents will go, That's really nice, isn't it? And they'll have a little conversation The parents will have a conversation. I don't get that because either my kid has wandered off somewhere or is kind of about to walk into the road or is just firing questions at me because Otto in particular, like just as a social crutch, just asks loads and loads of questions and it's it's with adults. He doesn't really engage with With kids in that same way. So it's very intense until they go into school. I don't get that time. I can't talk to another pare

Samuel

Yeah, because you're in disaster management the whole time until until they're in there. Yeah, exactly. I get that. Completely get that. Completely.

Mark

Yeah, and I I'm sure that some parents think I'm just being aloof or rude. Do you get that sometimes? You think, oh, they must think I'm an absolute arsehole.

Samuel

Yeah, I know. I've thought about that. And this was another point I was thinking: the fact that. because you're a parent of a of a neurodivergent kid and from exactly that reason you just said, then you have to force yourself to be like extra, extra saccharine to to other people so they kind of accept you in that social schoolgate environment. And you just don't have the fucking capacity to do that. It's like, just like I don't have it in me. Like I like we run a ninety nine percent towards Breaking Boy Like, we have so little capacity if anything goes wrong. And it's like, I can't, I can't throw your social needs into the mix on this. I just can't do it.

Mark

I had that like a a drop-off as well. Very often By the time I get there, I've had a shitty morning. It's been hard just getting them dressed, getting food in them, getting them out of the house, stopping the brawling. All of that, right? And then I I, you know, I'm traumatized by the time I get there. And the last thing I want to do.

Samuel

I shouldn't laugh, sorry, but I totally get your experiences.

Mark

I don't want to have small talk about Fucking bluey or whatever it is you're bringing, right? Because I'm just I'm just trying to just decompress. Like this morning, Jay was like Hitting me and kicking me, and like he called me an idiot more times than I can care to remember. And it was just like, I'm just getting through this I've just got to get through this. And he went in, then I've got to drop off India. And they're all like all of her class are really super friendly and like the parents are really lovely. um because they're often uh I think a lot of them are parents that this is their first child in school. So they're really keen and they're really just like, I just wanna roll into a ball and just like have everyone leave me alone. They are like really sweet, but I do sometimes I'm just like I By the time I get there, I've already been through so much that I just don't, like you're saying, I don't have the capacity for lightness at that point. And so when I drop them off, the kids, when I drop the kids off that that 10 minute walk home before I start work is my golden time. That is like the the the solitude is actually welcome Once, oh my god, like you know what?

Samuel

I love commuting to London because that's nice. That hour and 10 minutes on a train, it's like it's fucking sacrosanct that time. I can read, I could do whatever I want, and there's no questions, there's no anything else around me, and there's nothing I can do. There's a problem at home. I'm just there in that moment. And yeah, that is beautiful. I I love I love commuting to London.

Mark

How nice you're getting in a good amount of time. I've got ten minutes, so that's all I've got. And sometimes I have to I have to make sure that I I avoid walking at the same pace as other parents, which is terrible. I had that in this morning. Oh, no, it's like, oh, they're going that way. I'm going to go the long way around. Just, just not, I don't want to be rude, but I just need to, like, especially, you know, after what kind of stress of this morning, it was like, I just need.

Samuel

I just need to decompress and get my heads leveled before you engage with that person. Yeah, the the old I'm just gonna stand here and check my phone for no reason for thirty seconds so you could you could pace off ahead and my walk won't match your walk back down that road. Love it. I'm quite good at that now though.

Mark

Mondays are quite particularly bad because Mondays, I mean, Jay is very anxious about school on Mondays and he hates going into school, so he's much more difficult to get in. And that's always the time where people go, hey, how was your weekend? And they're really keen, really keen. I've had two days, right?

Samuel

Do you really want to know? Do you really want to know?

Mark

Yeah, and they but they're keen to you know, so they go, Well, we had a great we took Jacob to football pract And we had two class parties, and we went to a lovely little French bee show with my parents. And on a Sunday, we went for a long family walk, and then we went to a pub, and the kids played Jenga, and we got gently sozzled. It was a lovely weekend.

Samuel

What did you do?

Mark

I was like, well, I tried to start a board game. It ended up in a a violent argument over who got to go first.

Samuel

Some chairs were thrown, and the rest of the weekend was mainly screen time Yeah. And I'm a great parent for it.

Mark

Yes, exactly. I'm doing the best I can. It was the best I can.

Samuel

Yeah, that's That I ha yeah, Mondays are always released up like that. Yeah, I hate that because you've got nothing of value to add. It's like, no, we survive. We basically survive.

Mark

Yeah, the fact I'm here Is testament to my parenting.

Samuel

Exactly. You should be bowing down to me for me being at this school gate right now.

Mark

Exactly, though.

Samuel

They don't know what we've been through. No idea. Blitzful innocent.

Mark

God is nice. Yeah. And it is, you know, it's difficult not to feel like a social pariah in that in those circumstances. And that's the dichotomy, isn't it? Because I think we need to try and be present. so that we're not isolated and we have very little capacity to be present and be friendly and and light and a good person to talk to.

Samuel

Yeah. It's kind of a mirror of our kids' existence, right? Because we're trying to fit a neurodivergent existence into a neurotypical world, which is What they're doing. It just doesn't fit right at the moment. And it doesn't feel like the world is quite ready for all of these people who see and approach and view things differently And is yeah, that's exactly our experience obviously not the same as our kids, but there is a mirror. There's a mirror effect there, I think.

Mark

And I'm I'm I I'm struggling to know if if I was going to give advice to a parent of a neurotypical kid who is at the skill gates with a parent of a neurodivergent kid, I can't even offer any advice on how to handle me. Do you know what I mean? Because it's sometimes I I would quite like a chat, just just just take my mind off stuff. But uh a lot of the time I just need to be left alone. Yeah, I'm I'm super sociable normally, but some and I don't know how I can communicate that.

Samuel

How are they supposed to know? Yeah, exactly. That's a really good point. Another thing I was thinking of, because naturally, I'm quite an extrovert person But because of the situation you go through with kids with with neurophysical disabilities, you become like almost hermetically sealed in this in this world. takes this kind of extroverty part of you away.

Mark

Yeah, yeah.

Samuel

And and I I yeah, and so I I don't know what you would say to that person because Like at the school gates, 'cause what they've been through is so complex. I mean, Jesus Christ, I'd be like, mate, do you want do you want a beer? I know it's eight thirty in the morning, but like, let's go get a beer.

Mark

I mean, I've had three already. Oh, I know, I've got it. I know what the answer is. You know, at schools they have a friendship bench.

Samuel

Oh, have one for parents. Oh, that's a great idea. Oh, I love that.

Mark

And then it's like, I actually would like a chat this morning, so I'm going to sit on the friendship bench and see who fancies a ch

Samuel

Yeah, I'm in the red zone, man. I am in the fucking red zone.

Mark

Come and help me out. And then there should be an opposite of that: just like, please leave me alone, Bench. Yes, this is great. I love this. This is this should be society. That's how it should exist. Another of the um the factors of social isolation is that we I think early on it's easier to to make friends with other parents. You do make friends with other parents just because usually it takes a little while to understand that neurodivergency is a factor and, you know, that your seri your experiences are very different But over time, that becomes more obvious, and you lose friends along the way. You know, people who were friendly. Then find your setup a bit too challenging, possibly, or they find they have less in common. And so, quite a few people just drift away, people that you are actually quite friendly with. Have you had that? Yeah.

Samuel

I would say that like our core our core friends are old school and they've been with us from like day one of our kids born, which is great. You chose well. Yeah, we did. Yeah, we were lucky. We we met some good people at the right time. And we've we've made some friends along the way. And but yeah, we've definitely lost some friends along the way because we just don't fit into their Guys, should we do like bougie Sunday, lunchy, brunchy day? And it's like, No, we can't do that. Our kids will explode It's just not going to happen. Just not going to work. We should do it once just so they understand why. It never happens again. Yeah, yeah. Okay, you want us to come? Okay, we'll do that. We'll do that. Yeah, we've met some people. It's like, I think I call, you know, you're quite cool. I'd quite like to hang out. And then it becomes clear that it's never going to happen because Of their kid doesn't have any interest in our kid. And yeah, all of that just negates having these relationships. And See, it's a really tough one. It's a really tough one to navigate. I don't know what the solution is to that.

Mark

Yeah, I mean I mean, from our perspective as well, sometimes the the kids, Jay in particular, has a falling out with someone. Or is not I think occasionally has been perceived as not being a good friend to have by the parent. So the the kid has actually quite enjoys Jay's energy and his forthrightness and just Jay is you know he's a he's a ball of light when he's in the right frame of mind. And I think there's a couple of friendships that the children have been shepherded away because that that wouldn't be their choice of child, which is um Yeah, that is sad and heartbreaking. That is really hard. Yeah, that's horrible. That you know, that is sad, but then, like you say, the people that stay are the ones you want around, right? I mean, you know, the people who who actively encourage their kids to be familiar with neurodiversity. I mean, that's a hugely important lesson for people to be teaching their kids. And You know, the neurotypical families that are doing that, that are integrating with neurodivergent families, is really important.

Samuel

Massively so. Oh, absolute absolutely agree, yeah. And we've seen that like this this um in in that WhatsApp group spat I mentioned earli there was a kid who was constantly referred to as the naughty kid in that group. And it was horrible. It was horrible to hear that. And it's like, he's not a naughty kid. He's got some neurodivergency and he's had a really fucking tough life So don't call him the naughty kid. That's really unfair. And so, yeah, that kind of there's the labels and the way that people perceive, like, okay, yeah, that kid is probably a little bit naughty, and I don't want my kid hanging around with them. And it's like why not let your kid decide? Because people make friends with the people they want to make friends with. And if your kid like that kid, that's great. You shouldn't you shouldn't as a parent step in and decide, No, you cannot see that kid. That's a crazy thing.

Mark

Yeah, I mean it wasn't it wasn't as cut and dry as that. As them forbidding the friendship, but there was just you know, the invites to play dates sort of dried up a bit, and and but that's how it works, right?

Samuel

It's it's it's not a black and white stop process, it's like yeah, suddenly, yeah. that you're not invited to that party and you don't get invited to that party because you weren't invited to that party. And that's kind of how you get closed off in that way.

Mark

Yeah, it it it sucks, but yeah, it's kind of like I say, from in terms of sort of being friends with the parents, I'm fine with not being friends with people like that.

Samuel

No, no, it's okay.

Mark

Yeah, exactly. It's like, you know what?

Samuel

Yeah, I'm all right. I've got other people I can hang out with which I like. And yeah, quality, not quantity, right?

Mark

Well, it's not like oh, I've got loads of time on my hands to go out with loads of different people. So actually, you know, I do have a a small capacity for for friends. So you know, I'll I'd rather have a yeah, like you say, quality rather than quantity. And there is no one that I feel obligated to be friends with. Do you know what I mean?

Samuel

Sometimes it's like, oh, God.

Mark

Oh, our kids are friends. So we now have to chat, and you're so tedious.

Samuel

I don't have that. That's a blessing, isn't it?

Mark

It's not just the sort of social isolation of parents at school that is difficult with parents who neurodivergent kids, just like just going out in general. Is difficult. It's like non-school friendships as well. Because again, your social circle becomes smaller and smaller. Partially because going out socially in the evenings is a lot harder than it ever used to be. Not just 'cause you have kids, but like so firstly, logistical issues of getting a babysitter is not just the like, oh, she'll, you know, you babysit for my kids, I'll babysit for yours, or you'll get the like, you know, the kid from next door to do it. that our ki our kids have different operating instructions to most kids.

Samuel

And it's not for the faint hearted, is it Yeah, exactly. My manual is in Serbian and you clearly don't speak Serbian. Exactly that. It's just so difficult. And it all goes back to the that capacity that you've got. It's like, I just don't have the energy to try and build that process together to do that. As much as I'd love the idea of, yeah, let's go out to that new place, that new restaurant that's open, it'll be amazing. Everything that has to go in place before you get to that point, it's like, fuck man, after this week, I've got nothing left. I just can't do it. I just can't do it. Yeah, it's it's brutal. It's really brutal.

Mark

Yeah, and it's and it becomes expensive as well, because like I say, you can't do the the the swaps and stuff, um, and we don't have the support. You know, unfortunately, my parents don't live anywhere near us and and Tam's uh mum doesn't live near us so uh so we don't really have anyone we can lean on uh to that degree. So going out together Tam and I going out together was never very easy. Um and e even if you do manage to find a babysitter, going out as as a couple is not It's not as fun as it used to be, is it? Because really, really not. Because we found we just end up chatting about the kids, the admin of the kids, because they're the conversations we can't have in the house. Exactly.

Samuel

Okay. Have you done the the salt form for the EHCP? Is that done? Okay, great. Brilliant. Okay. Have you done the Blue Badge application? Have we got that in? Okay, great. Let's do that. Yeah, it's just it It goes back to your admin episodes. I was fucking admin, just swamp every part of your Yeah, you can't go and have a a fun, lighthearted conversation about nothing. It just doesn't exist. It's just so difficult.

Mark

Yeah, and you try. I mean, there were times where we're like, right, we're not going to talk about the kids, but it just happens. Because again, well, firstly, there's just like there's so much admin to do and it's like, oh, this is time that we can do that, but also we're not being interrupted. Normally, any conversation that Tam and I ever used to have was interrupted by a child at some point. So it's like, well, this is like, let's get shit done. Yeah, yeah, yeah, exactly. Here's the to-do list. We'll get those four done before the main arrives. We're just being efficient. I love it.

Samuel

Yeah, I know.

Mark

And you know, we've we've been out before and 'cause the another factor of this is that by the time you get out, it just f Fucking knackered. Look, I don't have the longevity anymore.

Samuel

Yeah, yeah, exactly. Yeah, you're getting up at stupid o'clock to deal with whatever the issue is that's occurred that morning, and it's just it just compounds about the day. So you get to like. kids in bed at seven, eight, eight thirty, whatever bedtime is, and you're like, I've got nothing. I've got nothing left. Yeah, I am. But then you book the restaurant.

Mark

It's like, all right, we'll go to the restaurant. I we've we've actually, you know, Tam and I, when we were together, we'd go to a restaurant and there were times where we'd just go Would just go home early. We could stay out for a drink, but I'm just knackered. She would just go home early. And I've actually returned before to find that the babysitter is visibly disappointed that we're not out for long. They're probably earning that m

Samuel

That's a bad feeling, isn't it? Yeah, we are just shit humans.

Mark

Shamed by the babysitter.

Samuel

That's awful. God.

Mark

Another factor of this, and this is the thing that sort of happened, you know, that that became a bit more prevalent with mine and Tam's relationship, is that if one of the other kind of parents of the neurodivergent kid is neurodivergent themselves, then as happened with Tam, they're much less likely to want to socialize. This is something that Tam realized. You know, Tammy's is autistic and with ADHD, but doesn't really want to go out to social events, to big social events, isn't comfortable. And for years and years and years, they'd been masking that and sort of like forcing themselves to go out. But Just burning out early on and having to go like go home early until they realized, oh, this is what's going on and having a a clearer understanding of themselves and they go, well, I don't actually want to go out to these events. I don't want to go to that party because I would I would find it sort of overwhelming and stressful and I don't want to do it. So then I wouldn't go out. So that became a sort of a thing. So again, my so because I thrive on social interaction, it's really important. I I'm the opposite. I get galvanized by talking to people and by meeting people

Samuel

Exactly the same with me and my wife. Exactly the same as that. Yeah, she's like, would rather just, you know what? I'm not bothered about seeing human beings. And I'd be like, I'd really want to go talk to people. I like people. I love the interaction. And that's something you really lose with kids with any disability. Oh my God. Yeah. Totally. Totally.

Mark

So it's it's yeah, it's it's quite interesting that that then as a couple you don't go out as much because You know, you stay in, and then that social circle shrinks even more.

Samuel

Yeah, having said that, for my birthday last year, I did go For a four-hour lunch on my own with a book, which was which was dreamy.

Mark

No, which was dreamy, yes. So you've got a boozy. Was it a boozy one as well? It was a little bit.

Samuel

There was a good bottle of champagne involved and a good book.

Mark

You just sat there and got stuck in.

Samuel

It was like this is the best four hours I've spent for a really long time. That is it.

Mark

It's sort of rewarding yourself because that's the thing now. I'm starting to uh you know, since since Tam and I sort of separated, we we're having more time to basically have uh social time on our own And that actually is something that wasn't happening before. It's it's actually really nice now. We sort of tag them a little bit. So we sort of arrange it that we we have family weekends quite a lot, but we also have a weekend away to ourselves where the other person does the parenting. And that's actually something that didn't happen before, and that's quite nice. So I end up going to parties. Not like, you know, not particularly extraordinary.

Samuel

Parties? What are these things you speak of?

Mark

I've heard these words. But like a mate of mine was like, oh, it's my 50th birthday in London. I was like. I can fucking do it. I can go. I can make it. My God. No one can stop me. It's my own weekend. So I went. That was awesome. And that was really, that was really fun. But I also find now in that situation, I'm still a bit socially isolated. Even if I'm there. Because, well, firstly, I've forgotten how to do it And initially, it was just like I don't know how to be sociable anymore. But then, you know, after a few drinks, I remember.

Samuel

It's amazing how quickly it returns, isn't it?

Mark

And but I We have to face it, we're not the most fun people to chat to, are we?

Samuel

We're really emergent kids. Yeah, it's like, hi, how are you? Well, I've cleaned feces off the walls this morning and I've slept three hours in the last three days. Yeah. And so I'm about to murder someone. But yeah, no, tell me about you. How are you? Yeah, it's just like, yeah, we've got nothing good to say socially other than problems and the solutions we've found to these problems. That's all we've got.

Mark

That's all we've got. So sometimes you go you go to these things. I went to th this party and I got kind of uh stuck. I was I ended up talking to some people who were just talking about, you know, your kids and how old are your kids And oh, isn't it a nightmare being a taxi driver and taking them all these hobbies? Oh, I've got to make him choose between taekwondo and swimming and gymnastics. And I'm just like, dude. I would love to be a taxi driver for one of my kids' hobbies. Drop them off, sit in the car, just have a moment would be absolutely unbelievable. But so but I don't want to bring the conversation down. Do you know what I mean? I don't want to go ah actually, guys, that's not possible because my kids are neurodivergent

Samuel

You don't want to be that guy.

Mark

That's it. So, what do you do, right?

Samuel

Yeah, you just basically basically exactly right. You don't say anything, and then you get more and more isolated. It's like, fuck, how do I stop this vicious circle of existence?

Mark

And it's really hard, really, really hard I don't know if you find yourself having this, where you're listening to people's minor complaints about their situation.

Samuel

Oh my fucking God. This goes back to the WhatsApp group, right? And there's people who are like, Oh, I'm really worried. My my precious darling he's had a cough for two days now. And I'm not should I co take him to the hospital? And it's like, are you fucking kidding me? Right. Like, I've spent 145 days in intensive care. Think your kid's going to be all right. Get over yourself All of this, it's like, oh my god, yeah, but you have to bite your tongue.

Mark

You can't, you can't kind of vocalize that, yeah, because you could just end that conversation.

Samuel

Dealing, yeah, yeah, but then the other view is we're already pretty ostracized. So, fuck it, if we're gonna be ostracized, let's go the full, the full whack and be like, go in hard and be like, Yeah, this is me, stake, take it, or leave it.

Mark

Yeah. Do you have it sometime? Because sometimes you find yourself in this situation where you meet someone new in a social situation and you're chatting to them. And you think, this person seems all right. Yeah, this is, you know, and you're having a conversation, and then they talk about their kids, and then they ask you about your kids, and then you've got like there's that moment where you're like. How much do I tell you about my kids? Because I could stink out this conversation immediately if I go in too hard, right? Right. So you have a choice to make of whether you just say, I've got three kids. uh or whether you tell them the full the full kind of uh extent of your your setup. And sometimes I you got it just depends on my mood really of of whether I do I don't always divulge that. And not because I'm ashamed of them at all. But I just can't be asked to go into it sometimes.

Samuel

Exactly that, right. It it it totally depends on the situation. And I I I maybe you've had the same thing, I don't know, but if you're in a conversation with someone who Kind of pissed you off in some way as a new person, then you can go in quite hard and drop in all of the shit, drive them away, exactly. I remember when our daughter was quite young, we took her to a swimming lesson. And there was, you know, the the typical mum who's like, okay, my kids are going to be the greatest swimmer in the world and they can do all this. And they're they're like one years old at this point I th she said to me after the class, she was like, W is your daughter okay? She looked a little bit floppy on the mat today. And I was like, Oh yeah, that that's because she doesn't have much brain left from being born premature, so it's amazing she actually survived and got on the mat. Oh yeah, I said that word for word. And her face just melted.

Mark

Brilliant.

Samuel

Yeah. And it's like moments like that are kind of fun. Like, yeah, you could drop those in. But yeah, it but it back to your point, yeah, it's like how much do you say at what point? Because I said about you, but I kind of want to like I want to share my my journey with people because It's a fundamental part of my existence.

Mark

Yeah, absolutely. Absolutely. Yeah.

Samuel

Yeah. If you want to know me, you've got to know about this. It's not like you take it or leave it deal. It's a package deal. Yeah. Yeah.

Mark

And, but, yeah, it's really hard to know how much to drop in at what point. Point. It's a really, it's a minefield. Sometimes I think maybe I should just make up an alter ego for these kind of parties where I've like, yep, I'm there. I thought I'm an accountant Yeah, that's it. I'm a social pariah for a very different reason, but at least I don't have to field so many questions. One of the things I find when I go to parties. Which is not I'd say that as if I go to Lotivis. It's happened about twice in a year. But when I go to them, I do find myself just being sort of Drawn to other parents of neurodivergent kids. I don't know if you have that. I just find them in a room. I don't know how

Samuel

That is yeah, I I found that as well. And that that's a that's a really interesting point. Like I again, like like yourself, I I have not been to many parties for the last few years, but I can think of two in the last two years that I've been to. But yeah, I've ended up in a super deep conversation with either a parent of a kid with disabilities or a parent who is themselves Neurodivergent or has experienced something like that within their close circle. And it's like, how how does that gravitational pull work? I don't know. I don't know. It is interesting though, isn't it? And you it's really interesting. And it's the same with our kids, like they gravitate towards other kids who who work on that same neuro level that they do. And it's like it's really interesting. And I don't know why that is. I'd I'd love to know more about that.

Mark

We're just giving off some kind of pheromone Those it's probably feces, I think, is what it is.

Samuel

Oh, yeah, he shouted himself.

Mark

This parent smells faintly of shit He's my kind of guy. Yeah.

Samuel

Come over here. Let's talk.

Mark

Let's talk. And you've got that similar sort of moderately far away look in your eye, like you've seen some horrors Yeah, that Vietnam Fair, like, oh my God. But I actually quite like that. That's, you know, I enjoy kind of these conversations are really important to me now. They I didn't think they would be, but talking to parents It's like Heidi Mavis said in the in the Honesty episode about a autistic people kind of bond over their shared childhood trauma And it's like I think neurodivergent parents sort of bond over our difficulties and and the challenges that we've had because we get it.

Samuel

We understand it. Yeah, yeah, totally. And maybe you feel the same on this, but I'm done with small talk with people. I've got no time for having a long winded conversation about nothing with someone. So I think this is part of the reason why you gravitate to other people With a similar shared experience, because you know you can actually have a meaningful conversation about something you've been through. Yeah. And even with really good friends of mine, it's like they, you know, get together, people. Talk shit for the whole night, whatever it is. And I find myself just not getting involved in that because I'm just done with talking. Nonsense. I've done enough of that in my life, or I have a lot of bullshit in my life. I did got to the point where it's like I'd rather talk about something a bit more meaningful, like this is my experience, this is what I've been through. Like, what's your experience? How did that make you feel?

Mark

And try and understand that a bit more.

Samuel

And I don't know if that's aging or our experience or a combination of both.

Mark

I don't know what it is, but it's quite weird. Yeah, it is. And I think there is a moment where you sort of mention that You have neurodivergent kids where that conversation can go one of one of five ways, basically. One way is that, like Very often you'll say that, and then it'll just get really awkward because they have no idea what to do with that. Do you know what I mean? That's nice.

Samuel

Yeah. Yeah, yeah, yeah.

Mark

Well, I mean, I mean, it's not nice. It's awful, I'm sure, but don't tell me about that. I don't mean awful. I'm not saying your kids are awful. No, no, no, and it gets really awkward. I keen to avoid those ones. The other one that you get is they respond with pity which is I don't I don't want I don't need your pity. I'm very used to my setup. It's what it it is what it is. And I've adapted and and I'm I'm I love my kids and they're amazing and I'm delighted to be in this family. I don't need pity, but I get where it's coming from. I understand that at least. Um, the other one is that you get like l they fire loads of questions at you, which again, I was like, you know, they just want to know more and more and more. And depending on my mood, I can either tolerate that or not. And then the worst one I get is where they try and relate, even though they have no experience of it. Where and where they go, oh, yeah, like my sister's partner's ex-girlfriend is autistic. Or something like yeah. Great.

Samuel

That makes us practically like married now, doesn't it?

Mark

So you're you know, you're one of us then, yeah? Well done. I I I that I I hate those ones, but and I know that they just saying it to try and have something to say. It's a it's a a way of connecting to go, Oh, okay, you know, we have this thing, but really I just just don't. Um, but occasionally you'll say that and then they'll go, Yeah, my my child is Autistic, like a sweet, and you'll be like, Oh, let's get a drink, let's go find a corner somewhere. You're my guy, let's go, let's go, exactly, exactly.

Samuel

That, yeah. When you find that person, it's great because all any social barrier is instantly removed and you're like, oh my God, we can just totally talk freely about all of the fucking shit we're dealing with on a daily basis. That is that is really nice. That's a really nice experience.

Mark

We need to have some kind of secret sign so that we can recognize other maybe we just wear some lanyard lanyards and then it could be the lanyards or maybe we need to like the

Samuel

Freemasons' ideology.

Mark

Maybe you can deal with that.

Samuel

Yeah, maybe that's part of it.

Mark

There's something that we could do to make it like people want to be part of this group. There's another aspect of social isolation. And and solitude as a parent of neurodivergent kids. And again, I don't know if everyone feels this, but sometimes I feel kind of pretty lonely in my own home, surrounded by my kids. I don't know if you have that.

Samuel

I think, I think, I don't know if I experience it in the same way that you experience it, but. Yeah, I've had moments where it's like, yeah, I don't quite know what's going on anymore, and I'm just like this weird person in this weird environment. I don't know if that's the same as you.

Mark

I've definitely felt lonely in this home environment It's a social thing where like I'll try and s strike up a conversation with my kids and it's just painful because they're not great at conversation, right? So it's not like a two-way back and forth thing. I've like No one actually shows any interest in me as a human. Do you know what I mean? They don't care who this guy is as long as he makes dinner. They don't they're not curious about who I am Like, they're not interested in my life experiences at all. They just want to know if they can have screen time. You know, I'll sit them down and try and tell them about an actual thing I did or a country I visited and they just they just walk off. It's like I'm just there going, I used to be someone, guys. Yeah, I used to have a life.

Samuel

Do you know what I've accomplished? Yeah, it's yeah, yeah. I have that to a degree as well. I think my I th as I said, I think thinker think my son's neurotypical, but uh he's two he he's four years old, right? You're not going to have a salient conversation with a four-year-old.

Mark

No.

Samuel

It's like how how was your day? Pooh Fart is pretty much how the conversation goes. That's it. Is that you or him? It depends on the mood, to be fair. It's a little bit of both. But got to get to their level sometimes. You've got to stoop. You've got to stoop to rise. Exactly.

Mark

Exactly. Now, I like to look at the positive side of this as well. It's very important to kind of look at the positives. And one we've already kind of touched on is That we don't necessarily have to keep people around that we don't want to keep around. But also, sometimes I will admit, I have used my kids to get out of doing stuff I don't want to do. Socially.

Samuel

Have you ever done that? Oh, fuck yes. It's brilliant. It's like, sorry, I can't make it because, yeah, no, our daughter would not tolerate that. It wouldn't happen. No.

Mark

It's the perfect chump card because what kind of arsehole would call you out on it? Ex exactly. It it's really good.

Samuel

And yeah, it it works in both social and work situations as well sometimes as well. So, yeah, it's it's great. It's yeah, they they they are good cards to pull in that in that regard, yeah. I mean, we don't get many benefits. No, no, there aren't. But that is definitely a positive.

Mark

The other sort of positive that I wanted to convey to people is that I and it's it It's something that we've touched on in most episodes of Neuroshambles, but meeting up with other parents of NeuroDivergent Kids is so important Not just sort of cornering the person in the bar when you're at a party, but actually sort of go looking online and finding those local meetups because there are, we're very well served for that in Brighton And I was talking to Angie Belch in the last episode. There's loads of stuff in Bristol. Wherever people are, there should hopefully be a local kind of meetup. Or at least an online forum or some kind of social media group that you can meet with like-minded people because it's really important that that is where you can be fully accepted for Who you are and what your setup is, and you find like-minded people who also want to make that connection.

Samuel

Totally, absolutely. Yeah, I couldn't agree more. There's, yeah, like you say, we're pretty blessed in Brighton, there's a lot of those groups here. to do that with it, be it just parents or parents and kids, and having that is so critical. That's our schoolgate bonding, right? That's our time to just get together with people and just have conversations without any bullshit surrounding it. It's like, you know, how when you you know, you meet someone at the school gate and you say, How you doing? It's like, oh, it's fine. Yeah, good, great day You meet someone in a meet-up environment with a kid who's neurodivergent, it's like, How are you doing? Man, it's been rough, it's been like Bruce, yeah, and you have a genuine, honest conversation with that person, and that's so much more valuable. than an asinine schoolgate conversation. Yeah, agree.

Mark

Yes.

Samuel

Totally agree.

Mark

Yeah, well, you know, which is one of the reasons that I wanted to do Neuro Shamb It is because I wanted these little secret lives of people that they don't feel like uh are heard. They think they might be the only people that are experiencing this. This. I'm one of them. You know, I was trying to have these conversations and not finding a home for them and just being a bit of a social outcast. So I wanted to get these stories out there and go, oh, actually, yeah, that happens to me as well. And that's an experience that I've got. Just makes it a much more kind of accessible to people who might not have that support. Love it. I guess Not that this is support in any way, by the way.

Samuel

It's therapy.

Mark

It's just me moaning. Yeah, yeah, exactly.

Samuel

It's just an old man moaning into a microphone. Hopefully, I don't know who listens to that. Well, you do, apparently I'm on board, and I passed it on to a lot of neurotypical parents. They're like, this is quite funny. I quite like this.

Mark

Oh, good.

Samuel

I like this. Yeah, I think it rings true to a lot of people. It's human and it's authentic. And that's a big deal, I think.

Mark

Yeah, I will drink to that.

SEECTION INTRO

It's not all rubbish.

Mark

So this is the it's not all rubbish section we're going to be looking at some some of the positives of our lives at the moment, starting with neurodiversity champions. Sam, do you have any neurodiversity champions for us?

Samuel

Yeah, so I am one of the one of the groups we're part of and is well, it's not a group, it's actually the the Brighton Hove Albion Football Club.

Mark

They do

Samuel

Albion Community Outreach, where they do a a football class on Sunday mornings, and it's for a I think the age range is five to nine And it's any kid with a physical or neurodisability, and the diversity in that group is fucking awesome there's the hyperautistic kid who's just sprinting laps around the room. There's my daughter with her walking frame playing footb There's the kid with Down syndrome who's just playing basketball. It's just such an awesome array of neurodiversity. It's fucking great. I love it. And they manage these kids and they organize matches, and there's, oh, it's so good So yeah, I would highly recommend any parent who's got a kid with a neurodivergence to look into that. If you just Google Albin the Community, it takes place at at the Sussex Uni Sports Hall, but they also do sessions at the Brydenhove Training Facility in Lansing.

Mark

So you actually get to train on the pictures.

Samuel

Amazing. And it's awesome.

Mark

It's very, very cool. Otto did the there's a summer one, they do it in the summer holidays as well.

Samuel

That's right.

Mark

He did that one, and he absolutely loved it. I didn't know they did the Sundays, yeah, yeah, so it's it's very cool. Oh, I'll get him back. The other the other Neurodiversity Champion I wanted to mention is a place called Jumpin' Fun in Burgess Hill. Do you know it? Sam.

Samuel

Yes, I know. Don't be fun. It's like it's like walking into an aircraft hangar in hell is the only way I can describe it. But it's so good for kids.

Mark

It's awesome. So what it is, it's a it's basically a m yeah, like an aircraft hangar but full of bouncy stuff. Boun like there's a huge inflatable uh assault course Basically, it's like imagine sort of total wipeout meets a giant bouncy castle and there's stuff to climb on and Uh now normally it there it's absolutely rammed with kids hanging around and it's super busy, but they have uh send sessions uh on on I think I think it was a Thursday morning, someone like that, basically. Look it up on the website. But there's a session where there's just a lot fewer people And there's not like pumping drum and bass music going on. So it's a bit more I mean, you know, the downside is that that I have to go on there with them. And it is a downside Because I'm too old for this shit. Like chasing them around. But it's really fun because they love it. They get to just completely go wild. There's not too many people, so they don't get overwhelm The one slight downside was that we just Jay suggested playing hide and seek 15 minutes before the end. I'm like 15 minutes. I can find him in 15 minutes, surely, right? Now, we'd previously had a conversation where he was like, I'm not going to go in that bit by the ball pit Because there's this little castle thing. He was like, that's too claustrophobic for me. I don't like enclosed spaces. Cut to like 20 minutes l When the session has ended, and all of the other people are coming onto it, and I still can't find Jay, and I've got the other two, and Otto is getting really worried because he thinks Jay's been taken or whatever. He's catastrophising it all. India just wants to go home. And I can't find Jay. I'm like asking people to try and find him. And I was just about to get them to put an announcement out For him. Bearing in mind, he's not going to listen to that, is he? He's in his own world. It's not like he's going to hear his name and go, Oh, that's me. He's just going to be in his own world. He just kind of turns up and goes, Didn't find me, did you? Fuck's sake, where were you? And it was like, I was in the in the bit that I said was claustrophobic. I was tricking you. I was like, oh.

Samuel

Oh, God. So we've got that to contend with now for the future consideration. Lovely. Yeah.

Mark

Oh, God

Samuel

So uh but we had a really fun time and I recommend it.

Mark

Amazing. So the one that we went to is in Burgess Hill, but they also have them in Salisbury, Derby, Rochester and Cheltenham I'm sure it's kind of chained so that they'll probably have the same send session. So, definitely worth a look because it's really fun.

SEECTION INTRO

Tiny Epic Wins

Mark

Okay, we're going to look at some tiny epic wins. Do you have any tiny epic wins for us this week, Sam?

Samuel

Yeah, again, super tiny in the global neurotypical world, enormous in our existence. Our daughter managed to get a T-shirt on All by herself.

Mark

Oh, amazing.

Samuel

Yeah, which I know it doesn't sound like a huge amount to anyone, but that's taken about. three years of getting her to understand how arms go through holes and how to lay the t-shirt so that they was at the back and managing To do that herself. So now she can actually do that herself in the morning, and that's like step one of maybe eight steps of getting herself dressed.

Mark

But that sense of achievement for her must be incredible.

Samuel

It's amazing. Yeah, she's like, okay, maybe there is a world where she can be.

Mark

Like independent, yeah, of course. So it opens up things together. That was a huge win. Yeah, that's amazing.

Samuel

Yeah, huge win. Yeah, so I'm going to log that. Yeah, definitely. That's a huge win.

Mark

Well done. Our tiny epic win. It's not it's not that great. But we've we've just we've found a T V programme we can all watch together as a family. Without having massive eyes.

Samuel

Oh, that's lovely. We've really got into that's a that's a big win. Oh my god, that's huge! We've really got into gladiators It's funny you should say that because the latest Brighton Albion disabled commun Community football, I went to, there were two other parents who said that there: that the gladiators was the big thing in their family.

Mark

I don't know why.

Samuel

They all bonded around.

Mark

Yeah, and we've never had that. There's always an argument, and there's always Jay going, This is. Babyish, or this is, you know, this is rubbish. But he loves it on one level. I think Otto and India love it on another level. And I love it just because it' You know, it's old school, right? I grew up watching it. I mean, it's, you know, it's so it's amazing. Yeah, so that's uh, that is, I'm gonna take that as a tiny epic win.

SEECTION INTRO

What the flip.

Mark

Okay, um, it's the what the flip moments. Now, these are these are the moments that you will uh often encounter with uh neurodivergent kids where they say things which completely flummocks you, um, and you don't really know how to respond to that. So, have you do you have any what the flip moments typically with your lot? I've got two at the moment with our daughter.

Samuel

One is that we've been talking about like future life and you know what you want to do when you grow up and. What would you like to be? Like, what job would you like to do? And our daughter came out with, When I grow up, I'd like to be a cave lady. And it's like, okay. The lady. I love the lady bit. Yeah, because it's such an elegant existence, right? It's like, I've got no idea what that means. So it was like, okay, cool, we'll work on that. We'll build towards that one. And The next one is because like she she's getting getting quite into to words and playing with letters and words, she started to talk a lot in in just abbreviations.

Mark

Okay.

Samuel

So which yeah, so started off with like, you know, instead of saying morning, dad, it would just be M D But now it's got to the point where I've come downstairs in the morning, and I actually write it down because it was just so complex, and I got greeted with C I H A B E A S F B and it's like the fuck are you talking about? And it's like and so and it it turned out she was asking for can I have a boiled egg and soldiers for breakfast But she's just abbreviating the entire sentence. It's like, this is at like 6:15 in the morning. It's like, I cannot deal with this. I cannot deal with this. I hope you did respond with WTF. I was just like, uh, why? What the flip? Yeah, yeah, just like, oh my god. So there's a lot of that game at the moment, which is quite beautiful in its own way to deal with. But it just takes a lot of mental power from you to try and decipher, but God, yeah. Sometimes.

Mark

Um, so the what the flip moments I've had uh this week. I had um one from Jay where we were We were playing a video game, and before we started, he went, If you even try to beat me, I'm going to cut off your big toe, then stitch it back on so you have minor nerve damage. I love the specificity in that.

Samuel

That is excellent. Only minor.

Mark

He's going to stitch it back on.

Samuel

Yeah, I'm a very good surgeon, and I'll make sure it's just minor, not major. He genuinely would believe that he's a very good surgeon.

Mark

As well, having never done it. The other one was when I was trying to, he doesn't like taking advice on anything. It's a challenge. So I will try and explain something to him, and he doesn't want to hear it. And I tried to sort of teach him how to do something, and he went. I don't want you to explain something to me that's as boring as moldy cheese that's decomposing and being digested by a rock grub. It's not a question. He's about that. It's like he doesn't script these things. These are just off the top of his head, and he gets so like. Yeah, it's so withering. His put down.

Samuel

These are brilliant words your kid has. He's beautiful. I love it. I love it.

Mark

What the fuck is a rock, girl? I don't know, but I want to meet it. And then the other what the flip moment was that it was from Otto this week, where he was he's got really into table tennis. And just like he goes into the living room and just bashes a table tennis a ping pong ball around the living room. And I just heard some crashing. And he came in quite sheepishly and he went, Daddy, I hit a tennis ball onto the third shelf and when I went to get it back I knocked a painting down. And when I went to pick it back up, I knocked another painting down. So now there are two paintings down, but I got the ball.

Samuel

Well done.

Mark

Well done, you let's celebrate that win, shall we?

Samuel

Whilst having to salvage the painting That you're not.

Mark

I'll just go tear up the glass. It's fine. It's just our life in it. So that's That's it for this this episode of Neuroshambles. Um before we go, I just wanted to to uh talk to you uh a little bit about your book, Sam, because uh Sam is an author and he's written a wonderful book called Lend a Hand. Written by Samuel Wilson and beautifully illustrated by David Ramsbottom. I love those illustr um published by Little Steps Publishing. Um and it is just wonderful. It promotes inclusion and diversity, which I think is Little Steps Publishing's kind of thing, isn't it? I think, yeah, they've got a let's say a nod towards that.

Samuel

And yeah, that was just to kind of as quick as I can give the back story on that.

Mark

Yeah, please do.

Samuel

We um we I wrote that book with with David over lockdown, over Zoom, um, just when yeah, the world was Fucking carnage and no one knew what was happening. And I I was living in a two bedroom gardenless flat with two kids and a dog, trying to think about what the fuck is going on in the world. And we decided we knew that there was a lot of charities were struggling to get any funds because it was just a very difficult time for them. So we figured, let's write a book for two charities that have helped our family immensely in that Amaze in Brighton. I'm sure you know Amaze, and I volunteer with Amaze in their befriending team. And there's another charity called Whoops of Daisy who helps kids with physical Disabilities in Brighton. So we figured, let's write a book and see if we can just raise some funds for these charities. And it did really well off the launch So we launched it on Kickstarter. I think it raised about 20 grand initially.

Mark

Oh, wow.

Samuel

Yeah, it was pretty cool. Yeah, thank you. It was really, really successful. And then ended up going into a bidding war between a bunch of publishers. When we signed with this publisher and it got launched officially as a public book in December, yeah, December 23. And that was the backstory in it. And yeah, the book is about just m really simple story of like helping other people make the world a better place. And no matter who you are, if you're neurotypical, neurodivergent, physically typical, physically altered, it doesn't matter. It's just that, yeah, making making uh the world a better place and helping other people is a is a really good thing to do. And that was the message we wanted to get across to to kids.

Mark

Yeah, it was wonderful. And I mean, it it looks amazing. So and that's available on on Little Steps Publishing's website, but also Amazon and Purchase.

Samuel

Anymore? Does that exist? I don't even know. Apparently, we're just holding on. They're still holding on. Okay, yeah, get it in there. Make them survive a bit longer. Yeah, buy it from that place.

Mark

So I'll put a link to the book in the. in the show notes. So if anyone's interested in that, you can click on that and have a look at it. But it is it's wonderful. While we're here, I'll also mention the socials for NeuroShambles. We're on Facebook and Instagram and Reddit and threads. If you could just spread the word, tell other people about it, that would be wonderful. If you want to give it a rating, that would also be great because it boosts it in the algorithms and more people find it. Other than that, all that remains for me to say is Sam, thank you so much for getting me out of my social isolation.

Samuel

Thank you, Mark. My pleasure. Thank you so much, yeah, for having me on. I've loved it.

Mark

And thank you to the audience for listening to this and continuing to support us. It's very much appreciated. And all that I will say now is have a nice life.