Why can't they stick with a hobby? | Nicole Bateman

EPISODE TRANSCRIPT

Mark

Hello, and welcome to episode 38 of Neuroshambles. I knew you'd be back, Neuroshamblers, and I've been lurking here with open arms to embrace the nonsense with you. Thanks for your lovely comments and also particularly for anyone who's left a review on the podcast platforms because that's really helpful to encourage other people to give it a whirl. We've got a cracking show lined up for you. As always, I'm going to be talking to a new guest about a topic of the week that I think is going to resonate with quite a few of you. We've also got some neurodiversity champions, tiny epic wins, and, of course, what the flip moments. So I'm going to stop dithering and we can crack on with it.

SECTION INTRO

Meet the guest. So, this week's guest is someone that I spoke to a while ago when I was Honoured to be a guest on her podcast, Conversations with a Send Mum. And as with any parent of neurodivergent kids that I speak to, I very often find that I run out of time rather than running out of things to talk about. So I thought it'd be good to invite her onto Neuroshambles to continue the conversation. Not only is she a podcaster and a parent of a neurodifferent child, she's also a former teacher, a trainer and a send advisor. So I am delighted. To be able to welcome aboard Nicole Bateman. Hello.

Nicole

How are you doing, Nicole? You okay? Yeah, I'm good. I'm good. Thank you. I'm really excited to be here and chat with you.

Mark

It's just nice to go on someone else's podcast so you don't have the editing to do, isn't it?

Nicole

Yes, I can literally leave it at the end and it's all over to you.

Mark

Yeah, exactly. So obviously, you know, the format of New Orleans Shambles It's important for us to know a bit more about your setup. So what neurodivergencies are at play in your household?

Nicole

So I am a late diagnosed ADHDer.

Mark

Um I got my diagnosis in December.

SECTION INTRO

So what pretty recent then? Yeah, yeah, okay.

Nicole

Less than six months ago. And then my son, he's autistic and he has epilepsy. And then my yeah, my daughter also has seizures but not uh diagnosed uh with anything.

Mark

Okay, well thank you for introducing your setup. We've got lots to cover, so let let's get started.

Nicole

What's the topic of the week?

Mark

So, this week's topic is something that I think many parents of neurodivergent kids start out with a lot of preconceptions about before their kids are even born, and that is the subject of hobbies. Because I think I don't think I'm the only one that had an image in my head of what my child's life was going to look like when they're about eight or nine. So, in my head, they'd be taking part in loads of different hobbies, no doubt excelling in all of them. Never arrogant about it, of course. Just quietly confident, you know. Maybe they'd be gifted in football or ballet or drama or. Street luge or whatever it was, you know, I've envisaged myself taking enormous pride in ferrying them to and from training or practice or encouraging and nurturing their ability, maybe giving them advice, not in a pushy way. you know, more of a like a supportive best mate with suspiciously deep pockets kind of way. And that eventually at some point, you know, you're gonna have to have that sit down chat, that serious chat with them, where you have to put your foot down and say you're going to have to choose one of these hobbies to become world champion at.

SECTION INTRO

In my head, you know, that's how I imagine it.

Mark

Yeah, and then obviously, as you say we meet our kids and we learn more about them and we realize that not only is that unrealistic, it is frankly insane to have that level of expectation. And I did have, obviously not though, not to the degree that I've just outlined, but I did have some sort of visions of them taking part in lots of different hobbies. I'm not the only one that has envisaged a social calendar full of different hobbies for my kids before I became a parent. Is that something that you sort of had in your head?

Nicole

Yeah, I think also because I did a lot of activities when I was younger and um that is definitely something that you see society often you know you see loads of people saying like, oh, I've got to take my kid swimming and then to basketball and then football and all of those things. So I think I think it is like quite a societable aim to be like, let's keep keep the kids occupied, give them all the opportunities and everything like that. But sometimes that that isn't the case in reality, is it?

Mark

It's it's interesting that you say that that's what you used to do, because it's that's certainly my experience as well. And I think that is something deep down I guess we w we want our kids to have the same experiences that we have, right? Like, 'cause when I was a kid, I did all sorts. I played football and cricket and cubs, I did drama, I was super active. And I think to a degree that's shaped my personality. So it's understandable that we would want our own kids to experience the same thing and you want them to have that same experience. But I think the crucial part to understand is that they're not going to experience those things in the same way that I did because of their neurotype So, what we think was fun and sociable back in those days is very likely to be my kids' worst nightmare. I used to love doing drama, right? I'd do plays. Like for my kids, if you're doing a play where a director is telling you exactly what to do and how to say things, for a PDA kid, he's going to trigger them enormously. It's not their bag. No. So you have to recalibrate your expectations of them.

Nicole

Yeah, definitely. And I also think, I think it's that, but it's also. like sometimes certain things aren't accessible. Like when I don't know about you, but I find it tricky to trust people with my children because especially my son. So I could send my daughter to anything and I'll be like, actually, she'll be okay. People will get her. Um she fits more into the society societal views of of kids, uh etcetera. Um but my son, you know, he there's barriers there that are put in place so that he can't access certain things and people don't necessarily understand his brain uh fully um and so therefore may see certain behaviors as not engaging or being lazy or you know doing different things like that. which I mean, this is why, this is the whole why behind wanting to become the friendly centervisor for the children's activity sector, because

Mark

you want every child to be able to access anything that they want to do if they do want that.

Nicole

Like and they can have a choice though, because we don't want to force it on them. But if they want to access uh, you know, chess club or football or something like that, you don't want any barriers that sometimes society puts in place. to stop them.

Mark

Yeah. And and I guess, you know, our kids, they're so multifaceted. The way they present can be so different because they've all got spiky profile.

Nicole

Right, yeah.

Mark

So it's hard for anyone who's organizing a group event to be to understand what those accommodations are. I think that's a really tricky thing, and it's you know. to expect them to be able to make reasonable accommodations for such a broad range of neurotypes or sort of a a broad presentation of their neurotypes is is really hard. And we've had good and bad experiences of that. So Jay because we tried loads of things with Jay w before we knew that He was neurodifferent. We would try him on loads of stuff just 'cause that's what you do with your first child. It's like, Yeah, my kid's gonna do all kinds of things. Like I said, you have that image of them being you know, doing all of these things. So we've tried parkour and cubs and drama and gymnastics. We've done them all.

Nicole

Yeah.

Mark

None of them have stuck, just to be clear. And I'll go into various different reasons why uh later on. But like uh when we did Cubs with Jay, that was actually pretty good. They were pretty accommodating. And I think partly because one of the organizers had an understanding of neurodivergency through their own family. So that definitely helped. And also because it's largely quite chaotic anyway. And when he wasn't able to cope with the more formal side of things, they just let him sit on the side and read his book. So that that was okay. Then there was gymnastics, which was they didn't get him at all because like he's he He's very, you know, he's got ADHD, so he needs to get his energy out, which is great. Loves to move. Gymnastics, wonderful. Let's crack on. However, quite a lot of gymnastics was them standing straight in a row and waiting for each one to do various different things. And he couldn't like he was fidgeting and he couldn't really cope with it. And um and they'd be frustrated that he couldn't stay still because of course he can't.

Nicole

Yeah.

Mark

He he's yeah, it's a need.

Nicole

That's a that's a key thing. That I always like go go on about, I suppose. Because it's like that kid is seeking movement to help them regulate. So therefore, when we say, stay in that line, sit still or wait or whatever. we're actually stopping that nervous system regulation, they're then becoming more dysregulated. So we sh we shouldn't be surprised that, yeah, maybe they might showcase certain fight, flight, freeze Whatever behaviors because their nervous system is dysregulated, so you're like, ah, okay, you're stopping them doing something that they really need to help them by telling them to stay still.

Mark

Yeah, and I'd pick him up and he'd be Just, you know, I could see immediately, you know, when you walk in from that kind of thing, because that was a drop-off one, which because it was sort of two hours, and you just assume because again, we didn't know his neurotype at that time. That point, so I'd assume everything would be fine, and then you turn up and you see his face immediately. You know, it's like, oh god, because it's etched with rage, you know, it's not, he's Yeah, he he's very much a fight response. Okay. And there was one time where they said, Right, we need you to do 10 of these things, right? And then they'd move on before he'd had a chance. To do it, so he didn't get to finish all 10, and they were like, It doesn't matter, we'll just move one. But he had to finish it, and he got so frustrated that they were doing it too quickly, and then he just boiled over. Yeah, and they just didn't know. How to deal with that, and I think we'd sort of, you know, me and Jay discussed it, went, this isn't, this isn't for you. Like a lot on paper, it is. But this this isn't because they I don't think they understood how to accommodate him. Um and back in those days, I didn't understand how to request those accommodation Yeah. I do now and I'd be very different now and I'd say, Look, this is what you need, this is how you can accommodate him and if you can't do that, that's okay, we'll do something different. But you know, as you're trying out new hobbies, some some are gonna be able to make those accommodations and And some aren't.

Nicole

Yeah, absolutely.

Mark

I mean, what about your son? Has he managed to find something?

Nicole

So for ages, only it's literally this school year. So he's in year four, so he's eight. And you know, most of the time, so after school clubs are basically out of the window because they've been you know, he's so exhausted, like after a day at school He then comes, he goes up to his bed, he holds his rabbit, he you know, he needs that downtime and he's exhausted. Like, he's literally so exhausted. Sometimes he falls asleep. And unfortunately, sometimes with the epilepsy, he has that altered brain activity all the time. So all it's not just when he has seizures. So it's all the time. and the tiredness that you know, all of those different things can play an impact too. And that can trigger a situation. Yeah, and then because he's overtired, so we have to make sure that He's not we're not overpacking our schedule like with anything. So therefore, doing all of these different things each ni each night of the week wouldn't be good for his epilepsy either because he'd just get so exhausted. And but he does do he does uh do our church youth group every other Wednesday. So that is that's achievable and that's good. It's a safe space for him because he knows it. We go there. you know, on a Sunday as well. We, you know, I'm I feel comfortable because I know the people who are literally running it and they know him. I've given them all the things. You know, that's that's safe. space, which I'm very thankful for. So we've just started that this year. And then and that is a drop off. But again, I wouldn't drop off many places. Like it's it's I have to trust That they get it and they trust that he's safe. Like, um, and then he's actually started tennis, um, which is which we stay, like parents watch. Um, so I again, I feel safe because we're there. And, you know, again, it was someone I knew from teenage years that I used to play tennis with. So I trusted him and trust that he gets it. I could have that conversation. So I feel like We've only tried out well, we tried out a few others, but those are the ones that stick, where I know that I can trust that

Mark

So for you it it's a trust issue as well. I need to know that you're comfortable uh accommodating my child and their needs. So you've been reluctant to do that, you know, from the outset because your child comes with special operating instructions. Yeah.

Nicole

And also if they don't it's like a vicious cycle of like if someone doesn't understand his brain, for example, you know, at some point at school, like he goes into freeze mode quite a lot. So he'll just like stop. He literally can't enter a room. If if something's changed or, you know, different things like that, he literally is there. And if someone Then he shouts at him for not following the rules, etc. He'll go into because he loves following the rules, he's very much a rule follower. But he goes into the, you know, he's then meltdown, he doesn't want to get told off, and all of this. and it causes then more stress, and then after those episodes, then he's more likely to have seizures. So that often triggers seizures. So if someone doesn't understand his brain and ha and his responses that can then cause more stress, which could then cause seizures. So much higher for him, aren't they?

Mark

Yeah, I get that. Yeah. And I think just to sort of touch on something you Referred to was after school club is not for the kids, it's for the parents, right? It's so that we don't have to take time off work to go pick them up, you know, or to look after them when they're at home. you know, that's the reason for after school clubs. And we don't really have access to that. Like we've managed to do it one day a week for Otto in India. Jaya's never really been able to do it. And again, I think the point is that at the end of the school day, when our neurodifferent kids are experiencing so much

Nicole

Yeah, throughout the day. They're exhausted and they're just done, right?

Mark

And you see that when they come back in the door and they unmask and they sometimes rage. Or they just, as you say, collapse in bed. So, expecting them to go from school into a whole new social environment, even if it's something fun with a bunch of other kids on a very different energy level. It's asking a lot of them. Yeah. And I understand that. But from our perspective, it adds pressure to the parents. Yeah.

Nicole

Yeah. It is. And that's why I think, yeah, after school clubs, we literally, yeah, it hasn't just gone from that. Those transitions, those different people, all there's so many mixture of things, isn't there? Especially if your child's been masking all day. then also at this after school club, you know, I've when I talk to different providers, you know, they can do that Coke bottle explosion at the or after school club because maybe they feel a bit safer there and they haven't don't have to mask as much, but then sometimes that's tricky for for you know, to deal with. And then yeah, 'cause we might get that at home after school, but then sometimes that happens in an after school club for some kids and, you know, yeah.

Mark

Yeah, and that's that's happened a couple of times with Jay when we tried him with after school. Club, that wasn't the reason that we didn't do it. We just kind of recognized that it was actually too much for him, and realistically, we could have him here and That he could just hang out. Because I work from home fortunately. So I'm here. I don't have to, you know, he can be in the next room and that that's okay. So that does help. But again, there's it's it's it is that that pressure, right? That um because it's not just during school time where we we would benefit from them having hobbies.

Nicole

Yeah.

Mark

It's half term. Holidays. Summer holidays. Summer holiday.

Nicole

Yeah. Holiday clubs. Would love to, you know. Yeah, exactly.

Mark

When you say holiday In like going on holiday and going to a hotel because there's that as well.

Nicole

Oh, yeah, true.

Mark

Anyone else that could just take take our children and help them do a hobby and and and us know that they're enjoying themselves would be amazing. But it's not Really feasible for a lot of our kids, I think. And that's the really hard thing in the summer holidays. And I'm going to probably do a whole separate episode about summer holidays because it feels like there's a lot to get off our chest there. But just to touch on it lightly. we have to take that time off work. You know, like I'm all of my holiday days this year are taken up with me in the holidays just Looking after my kids, it can't be like, yeah, right, you love football, so I'm gonna book you on a football club, and you can go for like a whole week And I'll pick you up. No, I have to take time off work to do that, to be around them.

Nicole

Yeah.

Mark

And that again takes its toll because that's eats into a holiday that I can have for my own respite. And yeah, it's a tricky one that I think all parents of neurodivergent kids That they will have to deal with.

Nicole

Yeah, definitely. Because that's the thing, especially with a six-week summer holiday, is just a lot. And even if you work for yourself, you know, etc. , and run your businesses. you're like, I know that in the holidays I have to just work in the evenings because I'm with the kids all day, so I can't really get so much done. So you've got to just adapt. And yeah, it would be amazing to just find a space where they fully fully get get our kids and they we could, you know, just for one day, just giving that opportunity if they want to. And that's the thing for different kids They may not want to engage in holiday club or anything like that. And, you know, it's taking the kids' lead, isn't it?

Mark

Yeah, yeah, absolutely. And. That can change as well.

Nicole

That's not like a permanent state.

Mark

So yeah, when Jay was deep in burnout, he did not wanna do anything. He couldn't face anything at all. So even suggesting doing Something that we know he would like was met with a very firm, quite aggressive no. Whereas I feel like he's in a slightly better place now, and we're trying to explore other options. For doing something. So, like you say, you got to meet them where they're at at this time and see and keep testing it. And Tam is amazing at finding one-off things for them to do, which is really Usually in the summer holidays, we'll find the these little one-off events for them to be able to do. But Because two thirds of my children, at least two thirds of my children, are PDA, they crave novelty. So, the problem is that it's not like they find this thing, go, I like that. I'm going to do it every single day for this whole thing. It's like, no, once they've done it once, it's like, right, okay, I get it. I don't want to do it again. I don't want to go, I know what it is. I liked it, but you know, I'm done now. Oh, so you've got to find all of these things, and there's just not enough to be able to do that. So, very often, we end up having them at home. And yeah, and you know, yeah, exactly.

Nicole

And that is that's so true. And to be fair, my two are very different. Like my son, he will hyper-focus on something. He has those deep interests and all of that, and he will go for that. My daughter, she loves the novelty as well. She's maybe similar brain to me, potentially. But you know, she, for example, has gone through so many different things. She's only six.

Mark

But she, yeah, yeah. So she's. She's done all the hobbies together.

Nicole

Yeah, she's got skateboarding. She went back to tennis, but then she wants to go. She's like, then I want to do You know, she's really good on her bikes or she was like BMX. You know, there's a whole variety of different things. But then it gets to that point. She did we bought the skateboard, we bought all of the things. She did it for to be fair, she did it for like Maybe, maybe about a couple of months. But then she's like, right, then I'm on to no, okay, I don't want to do that anymore. And we're like, we've got all your things. I know.

Mark

This is the hidden expense of neurodiverted kids of these hobbies that they try out. For like a little bit, and you have to get the kit at the start, and then they just no, that's done, we're done by that now exactly.

Nicole

It's uh yeah, it's really frustrating. So at least at least I know with my son, like he is now fully invested in tennis.

Mark

So he's he's he loves it. It's like you don't need a massive amount of kit for that either.

Nicole

No, exactly. Maths and tennis. There we go.

Mark

Great. A calculator and a tennis racket. Yeah, sorted. Yeah, nice. I like it. One of the things I find it hard to get my head around is parents who make their kids do home. Hobbies. Right. Because that is simply not an option for me. I can't just go, you know what, I want you to do this thing. You're going to do it. Right. Something that I had when I was a kid. My parents wanted me to learn the keyboard. So I had to do it.

Nicole

Yeah.

Mark

And I did it because they wanted me to do it. I didn't really learn it, to be honest, but I tried. They realized relatively soon that that just wasn't going to work. A stick and that was okay, but I tried it because they wanted me to do it. Yeah, and I get the logic of that. I had a really interesting conversation with my best friend about this. recently because he really wanted his kids to play a musical instrument. It's something that his parents made him do. He learned the piano from an early age and he's recently reflected that he's incredibly grateful that they did that. That because now he can read music, he can play music, and it's a thing that he's very proud of. But at the time, he acknowledges that he hated it and he didn't really want to do it. But it was that, you know, the short-term pain for long-term gain, right?

Nicole

Yeah.

Mark

So. He's started doing that with his son, and his son wanted to play guitar, and he's forced him into doing that. I say forced him. He's not actually, you know,

Nicole

Like he's not standing over him.

Mark

Yeah, exactly. But he's like, he's booked him lessons and going, I expect you to do this. And his son was uh similarly reluctant, but just had a breakthrough. Now his son loves it and he says he's really grateful for his dad insisting he Does it right? There we go. That sounds wonderful. That is never going to happen with my kids. And I presume with yours. I don't know. Is that The same?

Nicole

Yeah, no, I wouldn't I mean I we tried to be fair with musical that w again with my daughter. She she was like I want to do The uh the guitar. We tried the guitar for a bit, but it was all led by her, like and then and then she and then now she's learning drums. Um and But then even this morning actually, she was like, I want to learn bass guitar. And I'm like, wait, just get and keyboard as well. And she just like she again, she just wants the new, oh, I'm bored with that. I'm bored with that. My yeah, my son, we did we did think that maybe piano might be something with music and maths. He's very logical and all of that, that might be something that would be good. He did try out a couple of lessons with someone again who I was there, I was present, it was, you know, someone we know.

Mark

Did he need that again?

Nicole

But yeah, at the time he wanted to, but then Then now he has it, so we haven't forced it. Right.

Mark

But could you possibly imagine sort of looming over them and going, you've got to do this?

Nicole

No, I wouldn't. That's not my style.

Mark

No. But I just, it's because it just wouldn't work. I can't like, there's. I think there's that shift that happens in the in the parenting. When you have a neurodivergent child, it's certainly a shift that I made, was understanding that my expectations for my kids Are irrelevant. You've got to ditch them because they're not, because you're setting expectations that they're not able to meet. So, therefore, you pretty soon, I think. and probably longer for some than others, but you realize that they've got to lead the way. They've got to show you where they're at and what they want to do and you sort of follow them.

Nicole

Yeah.

Mark

So it was very strange to have that conversation with my friend about him going, This is what I expect You to do, and you're gonna do it, and then they do it, and then they're grateful. I like blew my mind.

Nicole

Um, yeah, I think that shift it took my husband longer to shift from that because that is a very that's more of the typical traditional parenting. Like you, you know, you do this and you yeah, exactly. But you do, you have to shift. You can't, you know, it does take time to shift That parenting style, but it's got to be done. Otherwise, you're going to have more meltdowns, more dysregulation, more stress if you don't do it this way around. What I might do is actually Just tell Jay that I'm gonna want him to learn piano and then record what his response is.

Mark

See what he says, yeah. Yeah, I mean, I'm pretty sure that I know the gist of what he's gonna say. Um, it's a hard note, he just wouldn't do it. And that's part of the partly PDA as well. He would say no. India would also it would be a hard no again PDA and Otto I think would just be hugely anxious and probably have A bit of a meltdown on that front as well. So it's not anything we need to expose them to, is it?

Nicole

No. And I think that's the thing: the shift from like compliance. to connection because if you understand if you're parenting a neurodivergent child or any child this is beneficial for any child to be honest but like it's like actually what what are what do they connect with? What are the ways that you as a parent can connect with them through hobbies that you can have shared, you know, yes, I don't like Playing the Nintendo Switch, etc. But that's not one of my deep interests. However, I will be like, Oh, how do you do this? Or what do you do this? You know, watching. And that's when you meet them because he's trying to explain what he's doing. Oh, look, I'm jumping and I'm like, oh, how do you jump? Oh, which is it A or B? Like, you know, I'm trying to connect with what he likes to do and what my daughter likes to do because I want to meet them where they're at.

Mark

Like you said. That is so true of having you a divergent person because that they they lead and you follow and you meet them where they're at. And it's like I fortunately love playing the Swiss

Nicole

Oh, there we go. Perfect.

Mark

So that's pretty good. And also, Jay is very into kind of anime series and things, and Japanese movies and that. Kind of thing. So I've sort of met him there, and it's become this real shared passion of ours now. And every night when the other two have gone to bed, we will sit and watch uh like a an hour of anime and it's really lovely. But again, if I'd have sat him down and said, come and do this

Nicole

Yeah.

Mark

Lisa Lloyd had a thing. Do you know Lisa?

Nicole

Yeah.

Mark

She had something on Instagram really recently about Interacting with neurotypical kids.

SECTION INTRO

Oh, yes. That was so funny.

Mark

And the child said, I want to watch like Britain's Got Talent or whatever. It's like, you want to watch what? What I want to watch. Like, I've never had that with our kids. Again, you have to it's the the same thing. You have to go and meet them where they're at.

Nicole

Yeah. Yeah. We my my son, he loves you know, he loves watching the similar things on repeat and stuff like that and, you know, it's Grizzly and the Lemmings is is basically like a yeah, oh, you know it, there we go. But I'm literally that I'm it's like Tom and Jerry, I feel like, but for but like reworked 'cause the you know lemmings always get grisly. But like I'm there and I'm like oh I find you know in my head I'm like I do not this is not really that interesting for me as a programme. However, what I love, he's there, super excited, stimming away, like the joy in his face. Like, it's amazing. I literally love it. So, I'm like, okay. Like, I need to do it. I'm going to get a thing as well, right?

Mark

Because I do this when I'm watching something with Jay and he likes it. And he really wants me to like it.

Nicole

Yeah.

Mark

He doesn't watch the watches.

Nicole

He's like, Are you looking, mum? Are you looking?

Mark

Like, he literally, yeah.

Nicole

And I'm like, yeah, yeah, yeah. And now I'm looking at you because you're looking. At me, and then he's telling me off for not looking. Yeah, yeah, but it's but that's such a sign of that shared connection.

Mark

Like, they want you to meet them, they want you to enjoy it as much as they. It's not really for them. This is, you know, it's that connection. Yeah. Is that they're. they want to see that you're enjoying it as much as they enjoy it, and that's really special.

Nicole

It's lovely that Jay does that.

Mark

Yeah. Something that you alluded to earlier and it is it is hard to hear from parents of neurotypical Is when they moan about their kids doing too many things. And I get it quite a lot now when, because my kids are at that age, I think it's around about the age of 8, 9, 10, 11, 12, that sort of age. where they're sort of able to do more stuff, but they're not independent enough to go to do stuff on their own.

Nicole

Yeah, they still need a taxi.

Mark

Yeah, they need a taxi.

Nicole

Mum taxi or dad taxi.

Mark

Yes, and they need you to f f facilitate things. So Constantly get them going, Well, I had to take him to tennis and judo and you know, all dressage, or all of these just ridiculous things, and they moan about it. And I get it. It's frustrating for them to a degree, but it is hard, I think, for me to not feel a bit of resentment.

Nicole

Yeah, and that's it's understandable, isn't it? Because it's like I wish that, you know, he would be able to access anything that he wants to do. Like but in reality that's not the case. So, you know, there I think when you parent neurodivergent kids and you like you've said before, you know, our expectations have to be adjusted, our parenting has to be adjusted from what we potentially thought before we had kids. And all of those expectations, you know, there is there comes with some kind of grief moments where you're like, Oh, I'm really sad that I thought this was going to be the case, and now this is the case. Um, but then, yeah, and it takes a bit of adjustment, doesn't it? And when people are saying things like that, uh, you know, like, Oh, I had to do this Yeah, you're like, Oh, because they don't understand it, you know, it it's not out of

Mark

Malice. They're not trying to annoy you or or to make you feel resentful. They just they just don't understand how that can be perceived by someone who isn't able to do that. And because it's not just That we want our kids, as we said earlier, to have the experiences that we have and the richness of experiencing the world that we had. But also, from a parental point of view, that's it sort of reduces our own social circle.

Nicole

Oh, definitely.

Mark

I think definitely a factor for me. It's like I'm not meeting that many other people. Whereas you know, look my parents got on with other parents when we went to play football. You got a whole team full of parents there and you you know, you you will stand on the sidelines or you'll chat with people or whatever. Yeah, and you bond in that way and your kids become friends and that spawns its own sort of social circle. And when we don't have access to that, and that's where a bit of resentment feel comes in, I think.

Nicole

Yeah, and it's so sad. Like I have different experiences with my son and my daughter. So for example, my son, you know, I didn't really know that many parents. because he doesn't get invited to the parties and stuff like that. So I feel so sad about that. And then it got even more amplified when my daughter started school. and she gets invited and we get get you know, we basically at half terms or things like that, we go to meet with her friends And my son comes along with us. Yeah, with those because I do have a circle of friends in her year group and I do have that. And then sometimes, you know, my son is like, why aren't I going to parties? Or why can't we see my friends? And things like that. And it's that comparison there. you know, he's starting to realize that. And that makes me really sad because you're like I see the differences. And I think if I only had the experience of for example, with my daughter and that social circle and all of those things, it would be so different. I wouldn't understand it. I wouldn't necessarily get it. How my experience was first of all with my son and the social circle that is lacking apart from like one friend, you know, in that.

Mark

And you might find yourself moaning about it to someone one day in that position. Yeah. So one of the things I wanted to look at is, because I think it's clear that access to hobbies is a different thing for neurodivergent kids. And I wanted to really unpick why that might be. What are the barriers in place? I think one of them is social interaction because for my kids, certainly being sociable does not come naturally to them in a neurotypical sense. Yeah. You know, they're sociable. In a neurodivergent sense, so they want to share their special interest and sort of talk about something in extreme detail. Yeah, info dumping, that's sociable to them. But in the way that neurotypicals experience sociability, they're not really aligned, I guess. And that is the thing I I I think around hobbies is that they're not just activity related. Because they exist to be social. Yeah.

Nicole

Yeah, absolutely. I think it's interesting because my son, he wants to, like, he loves people. So, like, he wants to be. friends with people and all of that. But sometimes you see you see that, like because of the way the language processing, you know, he's more of a guessal language processor and will pick up in chunks and quote and do all of those things. and then InfoDump, you know, about things like maths. Like he loves doing sums for everyone. And like some and I I'm I'm like, wow, my math skills have improved since having him. But so he's like, oh, what's You know, seven seventeen times sixteen, mummy. And I'm like, okay. But if he goes, so he will open sometimes with those kind of things. and some kids aren't interested in that.

Mark

I mean, I would I would venture to say that most kids aren't interested in that.

Nicole

Yeah, I know.

Mark

Like I mean, it's It's a challenging opening, isn't it? Yeah, yeah. At any party. Yeah.

Nicole

So so then, yeah, so then socially, it's like, how do you connect? it's hard.

Mark

Yes, because again, those kids are there for that connection as well. That's what they're looking for in these these shared events, no matter what it is. And, you know, Jay had Particular issue with this kind of thing. Drama was one of them where he did drama, and that is a very sociable activity. He'd do drama games and he enjoyed that, but I think he struggled then outside of that. I remember he did a He was doing a play, and we had to do a dress rehearsal, and there was a lot of waiting around, and he just couldn't cope. With that, and you know, whereas the other kids would chat and just kind of get on while they were waiting for things to happen, he, you know, he was there for this play, and this play is not happening, so therefore, he was. getting really fizzy and like, you know, and I was there with him all through the day, you know, having to occupy him, but he really struggled with that.

Nicole

Yeah, yeah, that un unstructured time sometimes, like You know, in clubs and waiting and all of that.

Mark

You're like, waiting. What do you do?

Nicole

Yeah.

Mark

Parkour was the other one, right? Because we did indoor parkour for a few sessions because that is right up his street. He's very physical. He's very, you know, he likes leaping about and he's, you know, quite athletic. So we thought this is perfect. But he would be waiting for other people to go on. Know to do their thing because they do a circuit and you have to wait for them to go. And he got so frustrated because they were not as quick as him, or certainly not as quick as he thought he was. Sometimes it's about perception.

Nicole

Yeah, true.

Mark

And so then he'd be annoyed at that and he'd be rude to people and then there would be a bit of friction there and it was It just wasn't worth it. He'd come out more frustrated than he went in, and that's not the point, right?

Nicole

No, not at all. And if some people, so my son, like I said, is a rule follower. So if people don't follow the rules. then that causes then friction. I mean, even at at traffic lights, if someone crosses in front when it's not a green man You know, he'll be like, oh, silly man. I'm like, yeah, you're right. Like, I agree. That man shouldn't have crossed over. But you probably, you know, saying that out loud to someone may be not the best.

Mark

Plan, yeah, but that's what he'll do.

Nicole

You know, if someone's not following those rules, then he'll say it, and that will get especially socially. That's oh, no, you can't tell on someone else, you know, all of those kind of social rules. Yes. Like that.

Mark

And I think those sort of changes to rules and things not going to plan as well. become quite a barrier to my kids being able to to cope. Again, especially with Jay.

Nicole

Yeah.

Mark

Like, for example, he used to r we got him into Dungeons and Dragons.

Nicole

Oh, yeah.

Mark

Which was great 'cause he's very imaginative and he likes that kind of fantasy. World stuff, and he used to go regularly on a Friday to this Dungeons Dragons section. It's very neurodivergent friendly. I don't know if you're familiar with it. But you have a dungeon master who basically then does it's essentially a story, right? And he manages the rules around that. And he really liked that. And then his dungeon master left.

Nicole

Oh, and a new dungeon master came in.

Mark

It was like, I'm done now. New guy, I'm sure, was just as good. Yeah. But something changed.

Nicole

Yeah.

Mark

Something wasn't as he'd expected it. And once that happens, it's dead. He's just burned it. Like it's dead to him.

Nicole

He's moved.

Mark

Yeah, and that's really frustrating. I see you're saying with your daughter. Right? Sort of cycles through things and then goes, right, nap, done with that, done with that, done with that. Are you sure she's not neurodivergent? Well, yeah, she's not neurodivergent. Well, no, I think she probably is.

Nicole

But okay, yeah, yeah, that's why I said she's a bit like my brain, my ADHD.

Mark

More so than the autistic, yeah.

Nicole

But you know, we'll see, we'll see. Yeah, it was

Mark

Because there is def definitely like cycling through things and then if they don't go to plan they're gone forever. Yeah. And again and with Jay I tried to get him into online stuff because that's quite a potentially rich vein of awkwardness. And I've talked to other guests who have sort of said that there's these that their kids take part in online stuff. And that's been really nice 'cause you chat via text or whatever. And I found an online Minecraft club Club, and he's really into Minecraft, so I'm great. And so I spent ages firstly finding out about it and researching it, and then because Jay's PDA sort of just dropping it there, dropping the hints, dropping the suggestion there and going, oh. This thing's on. This might be quite interesting. And eventually, he agreed that he was going to try it out. So then I had to have a Zoom call with the organizer to prove that I'm, you know, who I say I am. And I'm not some kind of Of nefarious being trying to access Minecraft Club, which is fine. So I had to have that with Jay, so that's another hurdle I had to do. Then I had to set access to a private server. So that we could get in there with Jay. And it's like, great, we're in, right? That's taken weeks. Like from first suggestion to get to the point that I'm there. And then the first call happened. And I was like, great. Okay, this is it, Jay. This is your time. We're going to set it up. And on the day of the call, for whatever reason, there was a technical issue. And I couldn't get in. And I'm now panicking because I know that if I can't get in, Jay is going to abandon that forever. He's never going to come back. So I'm stressing, and he is by the side of me getting really cross. And I can feel the tension rising in him, and he's starting to mutter and swear. And we're on a Zoom call, so I'm trying to sort of like, you know, his introduction to the group of people is him being really frustrated and sweary. So I'm trying to smooth that over. And trying to resolve the issue and and and I just he just then blew up and and and Ran upstairs and that was it.

Nicole

Yeah.

Mark

And I knew at that point I was done.

Nicole

Yeah.

Mark

And just one thing not going to plan. And that was a whole thing I'd set my mind.

Nicole

I like set my heart on him being able to do. Yeah.

Mark

Never, never going to be able to go back now because of that one experience.

Nicole

Yeah, yeah. And those fa yeah, those one experiences, that change, that not going as it it can, the unpredictability of things, that can really just absolutely derail. an experience for sure. And and people don't you know, it's like sometimes you feel like as a parent, like you're just trying to make sure all everything's okay, like giving giving them but sometimes people don't that you're talking to are like, Yeah, yeah, it'd be fine I'm like, no, no, but if if this happens and then this happens like literally you need to make sure that this you know, these are the adaptations or these are the things that are needed to make sure that he can access it or feel safe and therefore not dysregulated and all of this. And, you know, until people see it sometimes, they don't necessarily believe, they just think you're being an over-protective. Parent. Yeah, exactly. They'll be really, really picky or something.

Mark

And they don't understand. It's like, guys, we've got one shot at this. If we get it wrong. You will never see us again. And I'm not like, you know, this isn't diva behavior. This is just cold, hard facts. Yeah, it's real. It's very real. One of the other issues I think with our kids engaging with Hobbies is environmental restrictions when you go to something, and as you say, those because people won't understand, for example, what What the impact of something being too noisy will have on our kids, or too bright, or too busy. And Sometimes, you know, I my kids will turn up to something and take one look and be like, No, I can't, I'm not doing this. And again, it's not them being divas, they just understand it's pattern recognition. In them, right? They know I've been here before and I've been overwhelmed, and I probably can't articulate why, but this is not for me.

Nicole

Yeah, yeah, this sensory environment is so key. and I'm very passionate about the sensory with the super sensory squad, with the penguins helping kids understand their sensory systems. And in all my training, I'm like actually understanding that, you know, the lights, the noise, all of those things play such a massive role in um dysregulation of the nervous system and therefore then then leading to some of those behaviours that challenge that you might see or the freeze or or whatever. we as a society and as you know, if you don't yeah, have neurodivergent kids and you don't ha experience those sensory triggers yourself as a neurodivergent individual or what or whatever then you don't necessarily fully get that that's so important, the environment. Like one of my favorite quotes is, if a flower doesn't grow, then you don't blame the flower, you fix the environment. And that I use in my training for the friendly sendervisor, you know, in that framework, I literally had about fifty activity providers at the weekend. With some soil and pots and seeds, just showcasing that. Yeah, and being like, actually, you know, what's the water? What's the sun? What's the soil in your environment that you're creating for these children? and how can you adapt it so that they can bloom and thrive? Because I think it's so important that environment, whether that's the actual physical environment but also the culture of a space, of your organization, of whatever is so important. And that mindset, seeing everything, every behavior through a kind of sensory lens as well and seeing and thinking, ooh, what are they seeking? What are they avoiding? And how can I help to make sure that they have things that can help regulate their nervous system?

Mark

Yeah, and I think a lot of the time, that is dependent on us advocating for them. And because as we s discussed earlier, people can't be expected to make accommodations for every different Profile. They wouldn't know how. And, you know, I'm still learning about the profiles of my own kids and what they need. So you can't expect a sort of blanket rule. But having a dialogue with them and going. Going, okay, here's what we need, and I think you know, like going back to the gymnastics with Jay, if I'd have understood a little bit more about it, I'd have been in a much better position to be able to advocate for him and go. Here's what he needs. When he's like this, see that face he's got on now, right? That means he just needs to step out of the activity, go and sit down, maybe find him a ball to bounce on, you know, like those giant balls. Whatever it is, you can help to allow other people to give him accommodations.

Nicole

Yeah, definitely. And I think that's that's the thing. That's what I say to people is asking, not assuming. like it's asking about the specific child, asking the parent, have that collaboration because for especially for neurodivergent kids hobbies and activities going to actual clubs, for example, is only going to work if there's collaboration between the activity leader and the parents and the child. Like it all has to be All that preparation like you did for the Minecraft thing. You had to, you know, make sure all that preparation beforehand. And that's what some people don't see. They don't see the pre-prep. They don't see the weeks of you dropping hints and not placing a demand, but you know, like just dropping, oh, wouldn't this be nice? Oh, maybe, oh, look at this.

Mark

And then that one moment it's gone.

Nicole

Shit again. Yeah.

Mark

Gone. There was one with Otto as well. So you were talking about, you know, your son doing tennis, and Otto. is um he's really into sport. Sport as a hobby for him is amazing because it's the only time that I know He gets out of his head, right? It's a physical thing. It's so good for him. When he plays football, it's really interesting. When, like, if he's not doing sport, if he like knocks himself. He walks into a chair or something, he gets very overwhelmed and really upset really quickly. Okay, if he's playing football and he's not in his own head, he could get a ball Full in the face and be absolutely fine with it. He'll dust himself down and he'll get up. It's really interesting how i um the physical activity bypasses some of the anxiety that He has and tennis has been really good for him because we've got a special disability tennis group, which I'm going to talk about later. that he went to. But the the problem was he was too good. So he was getting frustrated at other people because, you know, he because he's actually quite good at So we were like, well, not a problem. Why don't we try the non-disabled version of this? Because you know the. coach, right? And you know the the court.

Nicole

Yeah.

Mark

You know, so it's exactly the same, just different people. And and, you know, like a higher quality opposition. If you like, not that he's in it for the competition, but he just gets more enjoyment when it's more of a kind of reciprocal thing. So we tried him at it, and I took him and He didn't even get to the court when I saw him tense up because he saw the people and he saw the number of people and he his anxiety just went through the roof. So he couldn't access That and I sort of shepherded him in and I encouraged him to take part. But when it all started, he just like I just saw panic And fear and anxiety in his eyes. And he was like, Shall we go? He was like, Yes, yes, please. And he just couldn't access it because of that unknown, right? Just too many people.

Nicole

Too many people. Yeah.

Mark

We wouldn't have known until we turned up what it looked like.

Nicole

No.

Mark

But it's that barrier to being able to do something, right?

Nicole

Yeah. Yeah, absolutely. It's for many people, you know, if you explained, well, why? He knows the court, he knows all of these things, you know, a lot of people wouldn't really think about that. But it's a big thing, it's still change. and a lot of people is really hard.

Mark

Yeah, and and it's this this it's just the unknown factor. He didn't know until he turned up. He looked at it and went, absolutely not And it's similar with football as well. Another kind of thing about anxiety with Otto is that again, love sport, absolutely loves playing sport. That is a legitimate hobby. However, As soon as anything becomes competitive, he freaks out. Like he can't do it. So we will be playing table tennis at home, right? We've got this little net that we stick on the kitchen table. It's like we, it's lovely and it's really fun. And we're just pinging it back and forwards and having a chat. As soon as if anyone suggests, hey, why don't we start scoring? He just loses it. He can't do it. And he gets really, really anxious and gets overwhelmed and dysregulated. So it's important to not have that. However, any sport that our kids do as a hobby at some point becomes competitive. They organize a game where you win or lose, yeah. Win or lose, or you say, right, let's join a league.

Nicole

I mean, that's his worst nightmare. Yeah, yeah, yes. My son Especially yeah, with competitiveness, that's when you're gonna hit see that. And at one point, you know, he was given like one life because he was better than other people and other people had other people had given two. And I was like, oh, this is the injustice of this. You know, I was like, you know, he was gonna because he, why, why do I get one? But he wouldn't necessarily, even if he said, oh, because you're better than the other people. We're trying to even try and, yeah, but it's like Well, it's unfair. So then it came and I was I could see him bubbling, but he was he was there. I was I was like, Okay, okay, we'll see. Um, but then uh he hit it And I was like, please don't miss it, please don't miss it, please don't. Because I was like, if he misses it and he's only got one life, like that's it. But fortunately, he hit it over the net. And I was like, okay, few. He hasn't gone out. Because if that had gone slightly differently and he had only had one life, bam. Because the the sense of justice that is unfair, like in his head, which I can understand why because he wasn't explained Oh, it's because, you know, you're better than other people, et cetera. So you only need one one line.

Mark

And that's, you know, that's the thing with our kids, I think, is that like Otto is close to being able to do a thing that I would quite like him to do.

Nicole

Yeah.

Mark

Because I grew up playing football, right? And going to football every Sunday.

Nicole

Yeah.

Mark

And I always decide I've basically ruled out the fact that my kids are going to do that. But Otto is actually really good at football.

Nicole

Right.

Mark

And his teacher said, We want him to try out for the school team because he's really good. And I was like, it's not going to happen. I don't like even mentioning it to him. I know is going to cause him anxiety. So he can't, he can't do it. He's just that barrier away from him being able to participate in a hobby. Yeah. But it would be good for me as well. You know? But yes, so I did. I sort of very casually mentioned it to him. And he was like, no, no, no. He's, you know, you see him shaking his head really rapidly and his eyes going big. It's like, I'm never going to mention this again. Just wanted to check. Another barrier to kids taking part in hobby. I think this one specifically applies to Jay. Have you heard of the Caesar or Nothing complex?

Nicole

No. Right.

Mark

So I found this so, um, Pierre Novelli uh has written a book called Why Can't I Just Enjoy Things and I read it or I listened to it. Recently, and it's brilliant. So he's autistic and he talks about things from an autistic perspective. And he mentions this in this book: that he's got a very Caesar or nothing approach. Yeah. I am not interested.

Nicole

Yeah. Right.

Mark

He will just abandon it. It's like either this is going to result in supreme triumph or it's going to end in total obscurity. There is no in-between, there is no learning curve. And it's very much like that with Jay. But he approaches things with supreme confidence. He expects to be good at something immediately. And if he's not, or crucially, if someone is immediately better than him, he's done. Like, that's it. He's never going to do that again. That's like everything that you do has a learning curve, right? Yeah.

Nicole

Yeah. I mean, you know, some people have a specific, you know. like they might randomly be amazing at one thing maybe, but like, you know, most of us, the majority of us, have to learn and get things wrong, make mistakes, all of that. you know, it's we tried to get a book because because my son finds it tricky with competitive like like Otto and, you know, and all of this and wants but also does want to be the best, like Jay. and finds it frustrating when not. We got the book, Sometimes You Win, Sometimes You Learn. And so we've been trying for a number of years, just, you know, just read the book. And then sometimes I do say, like, remember, sometimes you win. And he's like, sometimes you learn. I'm like, yeah, like, I feel it. Like. Or and what and if he's in if he's if he's feeling angry or whatever, sometimes you lose. I'm like, Yeah.

Mark

Yeah, yeah, you do.

Nicole

But it's yeah, but it's like trying to just be like, You're not gonna be the best at everything. It's it's hard though to

Mark

try and you know it must be hard with uh Jay to try and get him to understand that like yeah I think it's you know I think that it is I think to a degree it's anxiety isn't it it's triggering triggering anxiety around not

Nicole

Not being good, yeah.

Mark

Not being good enough, I guess. But I'd never heard of it kind of referred to as a Caesar or nothing thing, and I quite like that idea because it definitely Explains Jay's approach to things. Otto is similar, but not in terms of him expecting to be good. It's the opposite, it's opposite. He expects to be shit at something, so he won't even try. So he'll look at something, no, there's no way. Because again, it's that fear of failure, right? It's the fear of not being good enough. So rather than trying it, working out he's not good enough and then binning it forever, he just won't even try. It. That entry to a new hobby is there's a barrier before they even get there, and that's that's tricky.

Nicole

Yeah, and that's and what makes me sad is that a lot of these things where kids feel like they're not good enough or all of those things, it's past experiences of, say, the education system or whatever, because there sometimes there are b more barriers, it is harder to access certain things, but then it's not them. The society barriers that are stopping them. And then, but that makes them feel like, oh, I'm not good at that, I'm rubbish at that, and all of that, and builds up that anxiety. But if we removed those barriers, you know, f in society, changed the systems and did all of those things, then these kids wouldn't be feeling like it was them. 'Cause it's not that yeah.

Mark

Well, I think sometimes just being transparent about that to them as well, to contextualise it for 'em, say, Look, like you get overwhelmed by too many people, but you're here and you gave it a go and that is huge. None of these people here have had to go through that. So there's a victory. I mean, they won't say it's that, but it do at least articulating that and helping them to understand. you know, that success is relative.

Nicole

Yeah. And like those wins, like I'm always like, you know, celebrating those little wins. Like for example, I'm so happy that he can actually go to tennis now. Like Yeah. I'm like, wow, we found something. That's a massive win. Even though, you know, people in his year group, they may have started going in re Reception, and now he's in year four, or people may be going to so many different things, it doesn't matter. Like, for him, like, I'm like, that's a win.

Mark

Yeah, that's a massive win. One of the things I've been thinking about in terms of adopting Holly. Is whether there is an issue of our neurodivergent kids' tendency towards monotropism. Right. So in terms of like a deep dive into a specific thing, rather than a broader interest in lots of different things, it's those special interests. Right, because I think hobbies, by their very definition, are part-time, right? They're something that you do for fun occasionally, maybe once or twice a week, yeah, yeah. But with neurodivergence, that's not enough. It's nothing, it's part-time. I'm either fully in this or I'm not interested at all. Certainly, with my loss, special interest or no interest.

Nicole

Yeah, yeah, absolutely. It does depend on their yeah, their brain. And so for some, for sure, monotropism will be playing a part there, definitely.

Mark

Yeah, because it's certainly with Jay, if he's interested in it, he's all in.

Nicole

Yeah.

Mark

You can't restrict that to just taking part on a Wednesday between 6 and 7:30, and then it's off again until the next time. He wants to do it obsessively, like games or something like that. So I think maybe that's a barrier sometimes, is the way that they choose to engage with a hobby. Might not be interesting enough for them because it's not deep enough.

Nicole

Yeah, so if they've got that type of brain, then absolutely, because. you know, they want a deep dive and they need to get pushed to well, not pushed, but as in they need to get that engagement more because they already probably know certain things about you know that other people they would be learning things. you know, about that deep interest. But yeah, I think it it depends because for some they they've definitely haven't got that you know, my more ADHD, for example, brain, potentially, you know, it's not, you know, monotropy, so it you know, it's often They're kind of here, there and everywhere, et cetera. But when you've got all the HD brains, oh, there's a mix of yeah. Who knows which one's gonna turn up?

Mark

And that is you know, that's similar with Jay.

Nicole

Yeah, absolutely.

Mark

God, is this a Whirlwind in his brain.

Nicole

Oh, it must be. Yeah.

Mark

Absolutely. So, one of the things is if you find a hobby for them and it's a drop-off That is like a next level of anxiety as a parent, of dropping them off and then walking away and just hoping that everything's going to be all Right, yeah, um, as you kind of alluded to, so a lot of the time we have to be there, yeah. I'm there with tennis, with Otto, but that's only about an hour, and very often I end up playing with him anyway. Anyway, so that's fine. But there are some things that they go, no, you just drop them off. I'm like, are you sure? I mean, I know how this is likely to go. Do you have any things that you can drop your son off at at all?

Nicole

So just the church youth group. That's yeah, that's the only thing. Tennis, I'm there. Um, so yeah, but because he's there a few days a week in that church building and like With the same people as a kid and I trust them, so that's the only thing. Whereas actually, I haven't, yeah, I haven't dropped him off and left him anywhere else because we've done that a few times and very often.

Mark

You get a phone call. The worst example of this is was Tam had to deal with this year. And this was, I think, in half term. And Tam had managed to find a stop-motion animation workshop for neurodivergent kids, which was amazing. And they'd done it. Maybe a year ago, something like that, and they all enjoyed it. So, Tam had found that unicorn of activities. One that all of our kids could do at each level and age range that they'd done, that they'd enjoyed and that they said they were up for doing again. Like that I mean hats off to Tam for fighting.

Nicole

Yeah, fantastic.

Mark

And it was about a half an hour drive away from our house, but do you know what? It's worth it. So Tam had been looking after them during half term. And obviously, as a parent. You're working during the day, having a a hobby that you could drop them off at and you can go and do shit for yourself is golden. And Tam was not like going to the movies or, you know, having a leisurely lunch. Tam was had a hospital appointment and an optician's appointment to cram in while they were otherwise occupied. So it's like, great, drop them off. Go and do, you know, drive half an hour back to Brighton, do what I need to do, and then I'll go pick him up, right? That was the plan. Yeah. Did it go to plan? No. No, it didn't. So obviously you've got the, you know, setting the scene for them to go initially and you've got to build them up to that. And even though they've been there before. that you've you've got to get them on board. But I think part partly it was sort of getting Jay's buy in because Jay as a P Dayer needs the novelty. He's done it before, but he did say he'd give it a go. But you also need to put those Sort of emergency plans in place. If you don't like it, here's a bunch of books you can read. Just go sit in a corner and read those books because mummy needs to go and do the jobs for themselves, right? So that was everything was set up and Dropped them off and then started driving back. After about an hour and a bit, they called Tam to say, You're gonna need to pick Jay up because he's being really rude. And it's like, oh, now bearing in mind, these are familiar with neurodivergency, right? They're set up to handle neurodivergent Kids. So if Jay's behavior is becoming an issue, he's like overwhelmed. He's gone over the edge, right? And apparently, they tried to sort of go, well, you don't want to do the activity. So, why don't you go help out in the kitchen? Because we're making lunch and we're making pizzas and you like cooking, right? Apparently, he was really rude to the chef. You know, because that's his fight. You know, that if he's dysregulated or he's overwhelmed, that's how it manifests itself. And it's you know, for a for any adult that is Not related to him. Yeah. That's a lot to deal with. That's a lot. You know, I'm doing this for you guys. Come on. Give me a break. My pizza's not that bad. Come on. Like I'm a trained chef and you're giving me notes on how to make fing pizza. So Tam basically went on the phone and said, Could you just maybe No, just not be rude.

Nicole

Yeah.

Mark

And he's like, no, can't do that. So Tam had to leave the hospital appointment halfway through, drive all the way to the event. Pick him up at which point Tam being there gave Otto a get-out clause because he was enjoying it. And if Tam hadn't been there, he probably would have put up with it. He's like, No, I want to go as well. India wanted to stay still. So now Tam has to take two of those, drive them back, entertain them for a little bit until they're ready to pick India up. Oh, yeah. So ended up doing a journey backwards and forwards four times.

Nicole

Oh, wow.

Mark

Didn't get to the hospital appointment. Oh. Didn't do the optician's appointment. And this is. A day in the life of just trying to get our kids to do a hobby that for neurotypical families would be like: drop them off, go have mimosas, have a bit of a shop, go to the doctors, go pick them up, job's done.

Nicole

Yeah. Yeah. Yeah, that's, you know, way more complex, isn't it?

Mark

It's just a day in the life.

Nicole

Yeah. Yeah, it's all those and it and like you said, it's it's the mental load beforehand. It's also that day where it's like four hours in the car or whatever, back and forth, back and forth, you know, and then it's also dealing with if things don't go so well, it's dealing with the dysregulation at home as well afterwards, or if they've masked, or if you know something's triggered them, all of that too. So, you know, it's a lot.

Mark

And the disappointment of think You'd found something that would work because it's not easy. And you find somebody go, oh, this is going to work. And then you get their buy-in. It's like, oh, hello. Never get your hopes up, basically. I think it's the. The key to that. So, what does work for our neurodifferent kids? Because there are some things that do actually work, and I think predominantly it's where they're neurodivergent kids meeting together. That definitely works. So you sometimes can get those those clubs which are neurodivergent meetups, and that's quite nice because Jay used to go to one of these regularly, which was run by one of our esteemed guests at Neuroshambles, Jo Matthews, who's amazing. And that's how we know Jo through that. That was lovely because it was just a bunch of neuro exceptional kids just existing in the same space together. And the societal aspect of that wasn't jarring because they're not operating by unwritten rules that neurotypicals would. But so finding those kind of meetups is not easy. But if you can get those, they're kind of golden. And the people that run those, you've got to be pretty strong to run those. So, Joe, who runs the one that we have near us, is incredible at creating this environment where the there are guidelines rather than rules. You know, and it's not offended by rudeness or different or difficult behavior because they understand it. And it takes, so you know, it takes a special kind of person. to do that and to want to do that for other kids. 'Cause her kids are older now and not doing that. So the fact that she's doing it for other kids and she's getting joy from other kids and understands the impact and The importance that it has for other families is amazing.

Nicole

Yeah, and I was actually speaking to someone recently, and they are an autistic young adult and they go to the a a cl a youth club that is ju you know, for um neurodivergent teenagers, et cetera, you know, that kind of age range. And he was saying that, you know, he has to, you know, suppress his stims. All the time when he's out in society, apart from at this club where he can literally do it and he can be himself, he can, you know, stim with his hands and he you know, because actually it's really painful. Like when he gets home and he's have to have to mask these stems all day, his his arms are literally like so painful and so hurting because he's stopping himself yeah, there's so much tension in his arms. And I'm like Oh, I just want society to be less judgy to so that then everyone can openly stim if they want to and just not have to deal with all of that pain in your arms after a day of not stimming. So safe spaces for kids, for young adults, for everyone, where they can fully be themselves is like so important. Like I'm that's why I'm so I'm super passionate about it because it needs to happen. Yeah. But that's the

Mark

the importance, I think, of neurodivergence being among neurodivergents and there's no that you haven't got that judgment. So that does work in terms of hobbies. Just finding them is the tricky thing. And I guess, you know, look on your local autism support Facebook groups or, you know, just ask around for other parents of your Neurodivergence or start something up if you've got the capacity. Not many parents in neurodivergence have that capacity, I'll be honest, but those that do, yeah.

Nicole

Amazing. Yeah, and but but I'm also like I definitely think that yeah, specific things like that, safe spaces, but I'm also really trying to educate you know, all providers, you know, that that have a mix of neurotypical, neurodivergent kids, because I'm like, it's so important because if we don't Try and share that understanding that we know from the lived experiences, like to others that don't get it or don't have that lived experience of either being a parent of a child or like themselves. then the society's not going to change. So I think it's also you know, I've I've worked with some you know providers that I'm like, yeah, actually, I would be able to send my son to that you know, that that provider, because I know that now they look at behavior not in that judgy way, they look at it as how can I support them? And I think you know, yes, it is hard. It's like like teaching, like running activities, et cetera, with thirty kids in front of you or twenty or fifteen or whatever and balancing those needs. But I think it can be done. Like, and I think understanding those individual children, I think that's part of you know, that's part of the role to be able to chat with parents, to be able to chat with the kid, to think about how can we support. And yeah, it won't work for everyone, but for a lot of kids.

Mark

there can be that integration and that'll give them that access, it'll give those parents that relief.

Nicole

Exactly. Yeah. That respite. Yeah. Yeah.

Mark

Um and yeah, hopefully Be good for everyone. Definitely.

Nicole

It's not all rubbish.

Mark

Okay, we're going to look at the positives now. One of them, actually, conversely, I was sort of talking about parents of neurotypical kids moaning about. Having to ferry their kids around all the time. We don't have that. You know, there is that, I guess. Like, if my kids all had loads of hobbies. And I had to taxi them around to and from different activities, you almost certainly would not be listening to Neuroshambles now.

Nicole

Yeah, you'd have three you've got three kids with three different people. I just wouldn't I wouldn't have time.

Mark

You know, to be fair, though, they also probably wouldn't be neurodivergent, so I'd have nothing to say. It'd just be me gloating about how neurotypical my kids are. You know, do you know what I don't absolutely don't have an issue with? Food.

Nicole

Oh, my God.

Mark

I'll eat anything. Just me banging about that. That would be a shit podcast. No one wants that. So that is a positive. Neuroshambles exists. Because my kids don't have hobbies. If they start having hobbies, you'll notice maybe one a month. Yeah, that's it. I'm done. I'm done.

Nicole

Yeah, I think. Have you got any positives? Yeah, I think. It helps us. We have more like family time. Like the kids love, you know, being together as a family. They, you know, and we can slow down and re-evaluate things. like I you know, I qui I like have coming back. Obviously, my son goes upstairs, usually have a little kind of cuddle of his thing and like a little rest. And then we have our snacks, we have our regulation, stuff that I know is going to help them regulate to like kind of transition. Because otherwise, if I was going to be like demand, demand, demand, then it would be like It would not go well. So we have our regulation time. Yes, I am like lax on things like reading and spelling because I'm like Actually, that's more demands right then. And my key thing after school is regulation. It's like, how can I help that transition? I know that my son's exhausted. what can we do that's fun, like we might play Bird Bingo or like a little game, like um, you know, one of something that that he and my daughter like to do. just the three of us there and you know different things like that we might do some sums you know that's that's what makes that that's that's your son's idea yeah yeah definitely it's like let's test you know he makes a little test For me, and like, and all of that. So, you know, so you can do what they actually want to do rather than, and you don't have to rush, you don't have to, it can be more chilled, and then that lessens that stress, I think. So you know, rather than running all over the place, we actually can just have some time. And sometimes, yeah, I'm like and then we have you know, they have some screen time as well while I'm making tea. You know, it's all we have a certain routine basically, every day after school. We have a certain routine and that works for us.

Mark

That's a really valid point actually. The the the the amount of time that we spend together as a family is lovely and the quality of that time because we we're all together basically. So a lot of the hobbies Seem inverted karmas are us doing similar things, yeah. They're either in the house, or yeah, uh, but as a family rather than sort of external hobbies, exactly, which is really nice, yeah, and like you say, it does Bring that closeness together.

Nicole

Yeah. And like them, even though obviously siblings, they get each other, etc. Like, it's not smooth sailing. But because they do spend a lot of time. together and don't go to all the different clubs, then that bond is great when it works. When one is not winding up the other, then it's great.

SECTION INTRO

Neurodiversity Champions.

Mark

Okay, so Neurodiversity Champions. Now, this is the section of the pod. Where you get to tell me about any organizations or individuals that are doing amazing things in the world of neurodiversity. I guess firstly, before you launch into your nominations, though, you could tell us a little bit about what you're doing as the Supercentury Squad is really interesting. People might not have heard about it. Yeah.

Nicole

Yeah, so I, you know, with the Super Sensory Squad, we create resources rather than like groups or hobbies. but resources to help with understanding their eight sensory systems, their penguin characters, eight penguin characters. So they link to and they're penguins because my kids and my co founder's kids, Kate, they love penguins. So we're like, yeah, let's do eight penguins Why not?

Mark

Who doesn't love a penguin?

Nicole

Exactly.

Mark

What kind of a monster doesn't like penguins?

Nicole

I know. We thought they're very relatable. But it's just helpful because each of the penguins have a question. like what can you see, what can you hear, touch, smell, taste, you know, the standard five, but also then the internal sensory systems, intraception, how are you how are you feeling inside, you know, those cues for whether you're hungry, thirsty, what emotions you're feeling, whether you're hot, cold, all of those things link in with interoception. Um proprioception, which is like ha um What can you push, pull, and carry? That's flex. She's there holding her weights. That is very good for after-school activities. We literally have a lot of heavy work. We have a lot of pushing, pulling, carrying. to just help with that regulation, weighted blankets, et cetera. And then we have Rolly, who is our vestibular movement penguin and he's got hula hoop, you know, and stuff like that. So The reason why I've I wanted to look into sensory regulation is because my son, you know, his seizures are triggered by excitement or anxiety and and some other random bath is Is sometimes a trigger. Bath the city or no, no, no. No, having it. No, yeah, that's having a bath could trigger. Yeah. But you know, that excitement and that anxiety, they both do the s they dysregulate that nervous system. And so, therefore, if I can help him understand what sensory things he seeks to help him, like the proprioception, the rated blankets, fluffy things, tactile, he's very tactile. loves that, you know, and what triggers him, you know, then and then he we can try and like make sure, like, you know, if he's in a crowded space or what that's why he just needs to go by himself, to be away from people sometimes.

Mark

because that helps him regulate. That would be super helpful for Otto actually. Otto doesn't really understand why he feels the way he feels a lot of the time and you can't really label those kind of things.

Nicole

So I think opening up that conversation.

Mark

It's really beneficial. Yeah, definitely.

Nicole

And we got a book. We made a book that my son helped with, like a kid's book. The Super Sensuous God Saves. Buzz's Birthday. Buzz is our tactile penguin. And birthday parties are sometimes very dysregulating. So therefore, you know, Buzz gets a bit dysregulated and the rest of the squad help him out. And there's a cracked iceberg that my son was like, then the iceberg cracked. So that's in the story.

Mark

Nice.

Nicole

It's dramatic,

Mark

but no spoilers.

Nicole

Yeah, yeah, sorry. But you know, it's just trying to help kids understand that everyone has different sensory needs, and that's okay. you know, for some people they want the loud noise, for others they don't. And like, you know, it's it's relating to those penguins and using them to communicate what you need. So that's been super helpful. And then, yeah, and then through the Friendly SEND Advisor, I train activity providers to you know, in neurodiversity, inclusion, like all of that, to help them look at behavior. you know, through that sensory lens.

Mark

And yeah. All right, I'll put a link to both of those in the show notes. And have you got any neurodiversity champions that are not your That was me. Sorry, I wasn't. That's no, no, because I'm the one that suggested that. Just to be clear, you weren't just like, I'm insisting on talking about me. I just thought people would be interested. Yeah, yeah, absolutely.

Nicole

Yeah, I mean there's you know I'm working with a number of different organizations that's that put on great things like For example, you know, Boogie Beats do do some toddler classes that I'm working with the the franchiseor to try and help. with the inclusive activities because I've got a C P D accredited course and so there's a number of people. So if you look at my website there will be at the end of July a list of my recommendations for inclusive activity providers who have gone through. Yeah, so hobby yeah, that I we that has gone through my training, that I've given them the gold send inclusion mark which means I would feel happy to send my own child there which is the benchmark which is yeah yeah exactly which is massive so Um so yeah, on my website www. nicolebateman. co. uk, there will then be a list of my gold providers, silver providers So, therefore, you can then link up to find some inclusive activities if they're in your area.

Mark

Great, great, awesome. I've got a new neurodiversity champion, which is relates to something we were talking about earlier, which is the tennis club that Otto does, because there's a guy called Sam Mills. Who runs a disability tennis club in Brighton, and it's completely free of charge. So he used to be a coach. Like a high-level tennis performance coach, where he'd be like, you know, boot camps to get these kids, like, you know, on the professional circuit and all of that kind of thing. And he was traveling around the country a lot and he was like, I'm not really. Getting as much out of this as I want to. And then he his girlfriend was doing some sort of special needs teaching and that kind of thing, and said, Well, why don't you do this? And so he started it a few years ago and he just got a lot out of it. So he runs regular sessions which are sort of dropping and You turn up and they play tennis, and he runs it, you know, all through the summer as well, like every Sunday. And I just think it's such a wonderful thing to do, for him to do, and it's so inclusive and You know, Otto loves it. And I think for parents to do that as well and to get involved, to be able to go and take them to an activity that is low pressure and You know, kind of easy to access, has been wonderful. So, I wanted to give Sam a huge shout out because it's been really important for Otto and his self-esteem in particular, I think. has been really really benefited from from doing that and being able to take part.

Nicole

That's amazing.

Mark

So if you are in the Brighton or East Sussex area, and you fancy getting involved, not just if you want to take your kids, but also if you fancy joining in as a volunteer, because that's the only way it's going to really work, is if he attracts more people He's going to need more people to help as well to grow this into an even bigger, even better facility for our neurodivergent little ones. Then I will put all the details in the show notes and you can contact him and Out a little bit more about it, that'd be great.

SECTION INTRO

Tiny epic wins

Mark

Tiny epic wins now. Always love a tiny epic win. These are the things that for neurotypical families would not be seen. As a big deal, really, but for us, we know the real value of these little victories. So, have you got any tiny epic wins for us, Nicole?

Nicole

Well, I mean, I've got a big epic win. Well, you know, with that he he actually goes to tennis. He has been at a tennis club, like linked with hobbies, you know. That's a massive win. It's you know, he's year four, he's he's started a hobby. Like his first club, yeah, yeah, so that's a huge win.

Mark

That's a massive win.

Nicole

So not tiny, but still epic. Yeah, yeah, yeah.

Mark

I've got a couple of tiny epic wins. These relate to Otto's birthday. It was Otto's birthday recently. And again, he loves doing sport. And so I was sort of thinking of what we could do to sort of celebrate his birthday, but not feel like a birthday celebration. Because he gets super anxious about being the center of attention. So I talked to him and I was like, why don't we Just book a football pitch and get a bunch of your friends to play football. It is definitely not a party, right? It will not. There will be no cake, there will be no cards or presents, no one will say happy birthday, it will just be people turning up and playing football and then Just vanishing in afterwards. How do you like that? And he was like, that would be amazing. And he was so excited about it. So I set up a Facebook group and I told everyone about it. Like, this is specifically a not a Birthday party.

Nicole

Yeah.

Mark

And they were like, Should we bring presents? Like, no, absolutely, don't bring a present. Just bring yourselves. And we did it. And everyone kind of honored and respected that. Everyone just turned up, play football. We had a wicked time. Otto had the best time. He was so excited about it that he slept in his football kit the night before and he kept asking about it. Whereas a birthday party for him would be hugely anxiety induced. Normally, but the fact that we did that, we honored his birthday rather than celebrated it, and that everyone just had a wicked time was like a huge win. For us.

Nicole

Yeah, that's so good.

Mark

And the other thing I wanted to mention again for Otto's birthday is that Jay did a birthday card. For him now, what we do is that we get the kids to make birthday cards for each other, and typically with Jay's, I will vet it. Before he hands it out, because he has been known to be kind of cruel and a little bit mean in his birthday messaging, but he'd sealed it. And so I didn't know what it was. So I gave it to Otto for his birthday and I sort of stood over to him. And well, I did ask Jay, is this Mean or rude, he's like, No, it's not. It's like, okay, well, we'll see. Yeah, because your version of rude and my version of rude are probably quite different. Otto opened it, and the message inside was this. Otto, I know I belittle you a lot, but you're not so lame. Love Jay. Who's like I mean, like, not so lame is as good as I could possibly have hoped for in that situation. But for him to acknowledge, that was like genuinely, I got all teary about it, which is weird, isn't it? Because it's less than effusive, but for him to acknowledge that was a huge thing, and Otto sort of swelled with pride a little bit at being called not so lady.

Nicole

Oh, that's cute. Like, yeah, I'm like, oh. I'm taking the wins. Yeah, exactly. You gotta take all the wins, yeah.

SECTION INTRO

What the flip

Mark

Okay, so what the flip moments now these are moments where your neurodivergent little ones will do or say something that completely blows your mind and leaves you Wondering how on earth you're expected to respond to this. I have plenty of what the flip moments that come in. So I've got a couple of them that happen recently. One of them, I went to a car boot sale. And I gave the kids each a budget of five pounds. I was feeling generous. Think of what you could buy at a car bootsell for five pounds. Right. Jay decided he wanted to buy a rug. Right. And I was like, Have you asked how much it is? Because that sounds like it's going to be out of budget. And he was so he went he went off to ask how much it was and he came back in a family. Fit of rage because it was £20. And I was like, well, you can't buy the rug. But he couldn't shake the fact that that was a thing he wanted and he couldn't afford it with the budget. He had. And I was trying to sort of encourage him and I was like, Look, I know you can't afford the rug, but is there anything else you want? And he just looked at me and went The sweet release of death. I don't think that's available for sale. We'll just, you know, let's Just buy some tea bags. That's what he bought with it in the end. He just bought five pounds worth of tea bags. He didn't even want them. I just think it was just to spend money on. So that's that was the compromise basically rather than the sweet release of death. Yeah. Yeah. The other what the flip moment is the Classic PDA experience I have from India, who is really leaning into her PDA profile. We were on the trampoline. messing about and she leaned into me and she burped in my ear Right, which is never ideal And I went, India, that's horrible. Please don't burp in my ear. And she went, I didn't burp in your ear. I burped on your ear. And it's like, it got me thinking, you I mean, technically, you are correct. I mean, I'm not going to like go into that and go, well, some of the burp probably technically did go in my ear, but where's the threshold of in or on? I don't know. I just sort of shrugged and. On because there's no point, is there?

Okay, so that is it for this episode of Neuroshambles. Firstly, Nicole, thank you so much. For coming on to the podcast. If you want to check out Nicole's podcast, it is Conversations with a Send Mum. I will put a link in the show notes to that because she's interviewed some Exceptional humans, and I'm sure there's lots more planned, so that's all good. I will also say a big thank you to the listeners for continuing to join me for this non- And for recommending it to other people and saying lovely comments in the socials, as they're all very gratefully received. If you want to email me to suggest other topics that you'd like us to To cover, or if you want to tell me any of your own what the flip moments, please feel free to email me at hello at neuroshambles. com, or you can join me on the socials on Instagram, threads, Facebook, or TikTok. I think that's it. I think we're done. Thank you so much again, Nicole. All that remains for me to say now is have a nice life.