Finding your people when you have neurodivergent kids | Sam Bayley

TRANSCRIPT

Mark

Hello, and welcome to episode fifty-three of Neuroshambles. I've got a particularly special one for you this week, as Neuroshambles is proud to be taking part in PodcastThon, which is a week long event that sees podcasters around the world dedicate an episode to a charity that means something to them. So, I've got an inspirational guest lined up for you to discuss a topic of the week that I think is going to resonate with all of you Neuroshamblers out there. We'll also have the usual Neurodiversity Champions, tiny epic wins, and what the flip moments, so let us dally no longer and dive straight in.

SECTION INTRO

Meet the guest

Mark

Now, I am really excited to talk to this week's guest as she is one of the very first people I met. On the long and bumpy road to understanding my children's neurotypes, which feels like a bloody lifetime ago now. Not only is she a devoted parent to a now fully grown neurodivergent son, but she is also the founder of mASCot, which is a parent-to-parent support network for families who have autistic children and young adults. It's based in Sussex, which is how I came into contact with them, and they are a non-profit community organisation run by volunteers. So as soon as I heard about the wonderful Podcast Thon initiative, there was only one person I wanted to get on as a guest for this episode. I am absolutely delighted that she's agreed to come on and share her story with me. It's Sam Bailey. How are you doing, Sam?

Sam

Oh, hello, and thank you for inviting me. A little bit nervous, but you're making me feel comfortable already, which is great.

Mark

There's nothing to feel nervous about. It's just a chat, right?

Sam

Yes, and I'm good at that.

Mark

Yeah, yeah, exactly. It's me that has to edit it, though. Let's not forget that. So, when we start any episode of Neuroshambles, it's important. For the listeners to understand a little bit more about your setup. So take me through the neurodivergencies at play in your household, Sam.

Sam

Well, to start with, historically, we only thought it was Bill, our son.

Mark

Okay.

Sam

It's always the way it is. Yes. And as the journey's gone on, I've recognised a lot in myself more ADHD

Mark

Okay.

Sam

With the training I've done and everything and being surrounded by the most wonderful families in Muscott, which is thousands of families, I've recognised so much of myself. So our son Bill was diagnosed at three, just over three, autistic, which was back in 2000. He was, yeah, he was born in 1997. So he was diagnosed autistic. and then epileptic at six. So sort of our whole world was sort of around Bill's needs, sort of early doors. He was nonverbal till he was about six, so obviously communication, everything like that was quite hard. Paul's not got any official, but Bill constantly goes, I'm pretty sure dad's more autistic than me. So we do that and they definitely both suffer very, very strongly with demand avoidance, which I didn't know about probably up until about ten years ago. When I did the PDA training, it was like, oh my God, that just answers so much in our hearts.

Mark

Yeah, isn't it amazing when those things kind of click into place? You're like

Sam

Oh, oh, oh yeah, okay. We're not just an argumentative bunch.

Mark

We're just all new we're all just demand avoidant Okay, well thanks for introducing us to your setup Sam. We've got lots to unpick in this particular episode so let's crack on with it.

SECTION INTRO

What's the topic of the week?

Mark

So this week's topic is one that I would say underpins the very foundations of what Neuroshambles is about. And I think if I'm honest, is pretty much what inspired me to start doing this in the first place. And that is the importance of connecting with other people who actually understand what you're going through. mainly because they are in the very same leaky boat. I mean, as a parent of a neurodivergent child, I think it's fair to say that life Can feel pretty lonely, particularly in the early days when it seems like you're the only one that is having to negotiate this bewildering experience. So Finding other people who can who you can swap stories with and compare notes with and share strategies with is really important. And while I was in that phase of not having that network, I was fortunate enough to find mASCot when I was taking my first tentative steps into the foggy world of parenting neurodivergent kids. But obviously Sam, when you first learned about Bill's autism when he was three, mASCot wasn't there because you started it, right? So nothing out there existed. So how the hell did you find fellow parents in the same situation?

Sam

The only things that were available to me out there was what very few statutory connections we had. It was a little bit different when Bill was diagnosed because he went straight to the Gene Saunders Centre. Which is the special needs preschool. So, within that, I met fellow parents quite early on in my journey And that was we had pre-sense attached to that. So I had a lady who used to come round actually once a week to guide me through how to Do speech and language with Bill because Bill was the first child in Sussex to use the PECS, the picture exchange communication. Really? So I did the training and did that with him. He was that they they were just starting to branch out in Sussex then, so I was being guided with that, which was the most unbelievable foundation for me to build. my strategies with Bill that have carried on to adulthood.

Mark

And you could just get such an early view into how accommodations are so important.

Sam

Totally. And through my journey as well, you see the difference of late diagnosed children versus the ones that get an early diagnosis of how all of the family are affected by being stranded when you don't know what it is with your child, you don't know what you're dealing with. And that's you know, so really Bill had quite a textbook beginning, which was For me and Paul's, we didn't realise we were lucky then, but I look back now and realise not everybody got that. We just happened to be seeing the right People at the same time.

Mark

Yeah, of course. So you'd connected through fellow parents at the same time.

Sam

At that time, but that was only for a short amount of time. And then the only thing that was offered to a statutory was what Now, that our BHISS service, our inclusion service in Brighton and Hove.

Mark

And I'm familiar with their work, obviously.

Sam

Yeah, before they changed over, they were the ASC Support service, and they would do talks for us probably once a month or once a term. But they were obviously useful to a certain point, but it was more talking at us about Things that we might not necessarily be experiencing. It was just, and there wasn't enough space to open all those emotive Subjects, we weren't really allowed to talk back. There was always it's never enough time. Sorry, we need the room. So they'd then spill us out on back home again while we were being heightened up. So I just started taking the families down to Emmeus, to the local coffee shop, and saying we need to carry this conversation.

Mark

It's like a breakout group.

Sam

It was. Yeah, that's a great idea. And because I sort of like led them all there, 'cause I used to go there quite a lot to because it was a nice, nice community place, we ended up that people, the next talk would say Can we go again afterwards?

Mark

So you're ear really early days, you're learning of the benefits of just having just sharing experiences and talking, not being talked at. but talking with people who are going through similar things.

Sam

Yeah. And then when Bill started having seizures and he got his epilepsy diagnosis, it it's completely sideswiped to me. when he got his autism diagnosed, I was a bit like, right, I've got to learn about this, I can sort this, I can manage it, we'll just learn to adapt for him. But when it's a medical need it's out of your hands. So that actually was a lot, lot more scary for me than when he got his autism diagnosis. So I found an online group called POKWE, which was Parents of Kids with Epilepsy. And it was my go to place when Bill was in bed, Paul was, you know, chilled out. I'd go online and talk to other parents, and it was the most unbelievable support that I needed. And I just thought, I haven't got this for the autism side of everything. So with that meeting people, I'd already started a lot of the coffee mornings. And I also realized that a lot of parents couldn't go to these workshops because they were working or they had a child they couldn't leave or any childcare to access. So I started taking notes at all the meetings and emailing it to people. who couldn't go. So then I thought, what a great place if we have an online forum where we can actually all just talk in real time and chat. And so that was the the the birth of mASCot.

Mark

Yeah, and but just just being a beacon of Of light for people to gravitate towards, like confused moths.

Sam

Just going, just going taking away issues.

Mark

Is anyone else going through this shit? Yeah. Oh, thank God. I thought it was just me. And yes, whether that's w you know the epilepsy forums or with the autism side of things, just being able to share experiences with other people Became really important and obviously inspired you to do the rest of the amazing stuff that you've done, which we'll get on to. I wanted to look at the early expectations when you are raising kids, right? Because we all have these ideals, I think. When we we've got a baby on the way and we go, I pretty much know what the rest of this phase of my life is going to look like, right? And we have an idea of how that's going to look. Because when they're babies, there is an assumption, and I think all NeuroShambles listeners can relate to this, that our kids are going to be neurotypical. To be honest, it wasn't even an a consideration that they wouldn't be neurotypical because that wasn't really wasn't not really discussed or talked about. It wasn't it certainly wasn't a consideration of mine. And I didn't really have any awareness of neurodivergency until it Knocked on our door. So when we're in the early years, we lump ourselves in with all the other local parents, right? It's like, hey, everyone's going out for a coffee or we're going to go to soft play or whatever it is, so much of the bonding that happens with friendship groups, I think, in those days is based on swapping notes and comparing experiences with other parents. I think it's an important ritual because all parents, regardless of the neurotype of their child are knackered. They're like they're constantly exhausted and anxious and uncertain. So swapping notes and comparing milestones and whatever you know, all that other stuff you do with newborns and toddlers. is really important because you're trying to make sense of this new life that you've been catapulted into of having to c care for another tiny thing. And it becomes really important to connect with other parents. And typically, that's done through like with baby groups or toddler groups or parents at nursery school and Once that starts to happen, I kind of assumed I knew what I was signing up for. It's like, what's going to happen is the kids are going to go to primary school That is going to unlock a treasure trove of potential new friendships with other parents. Our kids are going to make friends with loads of other kids because they're really going to be popular. The parents are going to organise play dates and sleepovers and day trips and if we're lucky, we might even like some of the other parents enough to consider them actual friends And we'll take it in terms of babysit so that me and my partner can spend time together being romantic and keeping that side of our relationship alive. And we'll go around each other's houses and the kids will have it make lifelong friends, like we see in the movies, and we'll go on holiday together, and it's just going to be wonderful. It's not how it works out, is it? Pretty soon you start to realize. This is not how my life looks.

Sam

Yeah. You know, we we got Bill and it was just it was brilliant. But it was like exactly what you said, you know, Paul's into his motorbikes. He's always been with the the cool biker lot, you know, and I'd have visits of Paul and Bill out the front. doing the motor bikes and all Bill's mates said, All right, Mrs B, put the kettle on and you know, this lovely biker group out the front and all these things. I didn't envisage that I'd have to talk for nearly eight years about Pokemon And you the most brain numbing things, you know, called that, you know, my mum was a nanny And my sister already had two children. I thought, oh, I'm going to be the best mum in the world. I know all these parenting hacks that I'd learned off, you know, people around me.

Mark

But those parenting hacks are for neurotypical kids, right?

Sam

Yeah. Yeah. We we only got to two before it started flagging up that there was things with Bill.

Mark

Okay.

Sam

I started to notice. So straightaway my brain started to go well actually all of my friends and family saying try this or do this or, Oh, don't worry about him not talking. I knew a kid who didn't talk till they were three and but there was it was more than just him not talking. It was more but I didn't Autism wasn't even on my radar. And then I just remember Paul getting a paper one day and it had one of the supplements in it. And I opened it and the whole middle thing was this article about this woman who just had a child diagnosed at three And I was literally like, she's she's been in my house. She's watched. She you know, she said things like I had like a line up of um little ducks that were on the bath And I started noticing every time I went in there, they were all turned round facing the wall. And I'd go in and turn them all back again. And she had the same story. and all of these things. And I thought, well, they're all things Bill does, that we just think it's little quirky things that he does. And then that was like straight away was my, oh, there there's more This is starting to change the course of what was happening. And then the first port of call I just booked for Bill to go and see a speech language therapist

Mark

Yeah.

Sam

And she was the most amazing person. She said Bill was only just over two. She said they don't normally deal with any children until they're two and a half. She said, but there's something really going on with Bill here. She said, I don't want to leave it. So she arranged to see him, do a whole proper assessment on him, and got the top speech and language person who straightway said, you know, he he's autistic. And it was like and then, you know, they obviously they had to go through the official diagnosis, but they could see it So then it was like straight away I knew my parenting and all of my expectations were just going to have to go straight to one side.

Mark

Yes.

Sam

And I was going to have to take a step back and find my own way of parenting, not what my mum had done, what my sister had done, my friends had done.

Mark

Make up your own rules in the end, isn't it? And I think, you know, no matter what age that is, there is a point where, as a parent, you start to notice that your child is different to most other kids. So obviously, you got it very early. And you saw the signs really early, which has been incredibly beneficial to Bill over time. And Tam and I started to notice differences with Jay when he was younger. And you start to see that your experience does not align with everyone else's. And when you're at that little crucible of parenting where you're all swapping notes and comparing stories and you start to notice that yours doesn't quite match up. That's quite a difficult period, I think. It certainly was for Tam and I when we knew something was a bit Different, but we didn't know what it was, so we're still trying to crowbar Jay into situations that all the other parents are doing with their neurotypical kids. So we'd be going to birthday parties and like You know, school discos or trying to get him to do hobbies and stuff, or days out, and things that are supposed to be fun, right? They were on our itinerary of the things we were definitely going to achieve when we were, you know, starting out as parents.

Sam

Yeah

Mark

And this is the time we're supposed to be bonding with other parents, right? So we would go to these things. You know, soft play is a good example, right? You go to soft play with your kids, and the other parents. Are sitting and chatting. And I can't do that. It would never, never work out that way because I spend most of my time managing Jay and having to almost police the way that he played with other kids when he'd be coming across as rude or unapologetically spiky, I think is probably and you start to sort of drift away from that those friendships groups, I think, at that age. Did you notice yourself doing that? I mean, very early on.

Sam

I think 'cause I've always been a bit um Some people say gobby, some people say bolshy. I don't know what the the right terminology is, but I actually and again, because I had that early information If if somebody made a comment or put their backs to us or judged Bill in any way, or judged me in any way, I was very verbal to say actually, he's behaving like that because he's autistic and he's really struggling at the moment. So I found that people couldn't walk away or turn their backs to me 'cause I'd be excuse me, I need to tell you what's this

Mark

which is wonderful. But you knew at that age, like for so many of us in those years. We don't know. We can't definitively say that. Like, you have those whispered conversations. Tam and I would talk about it quite a lot at home. We do bits of research and we talk about what could be going on, but we didn't talk to other people about it because it was still unconfirmed. It was undiagnosed. And that becomes quite difficult, and what you end up doing, I think, well, what we ended up doing was almost withdrawing from other parents because it's a diff it's difficult. It's difficult to not share those same experiences and not, you know, firstly, you can't go to the same social Groups that they go to. You can't go to the pub when they're like, Oh, should we go to the pub? We'll all get a babysitter and go to the pub. It's like, I can't get a babysitter, mate. So, uh, yeah, I'll just stay at home. Um, and then you end up being a little bit more isolated. And what happens almost by stealth, I think, is that what starts out as quite an optimistically large group of friends Like, hey, I'm friends with everybody. It sort of gets smaller and smaller, it diminishes

Sam

You're left with the hardcore friends who put up with anything.

Mark

Yeah, and they are my friends now. Oh, fucking hardcore. But not always. Because they've made a conscious decision to do it, or because you've made a conscious decision, you just sort of fall away from each other, right? I mean, like, so we firstly, I think we stop being invited to play dates and birthday parties. Mainly because Jay wasn't really interested in making friends with other kids and also because when he did go, he was, you know, not the best guest. I think it's like it wasn't the worst, but you know, I've seen worse at my own birthday parties, but it wasn't a conscious decision on the part of other parents. It wasn't like we were being deliberately ostracized or excommunicated for not fitting in.

Sam

And I wonder how much of it is as well, which I know with me was this: I actually knew deep down how hard it was for Bill, and he didn't enjoy it. So, how could I enjoy myself somewhere? So, there's a lot of that, your care and protection coming in, of that it's actually it's not necessarily always that people are turning away from you, it's that you're pulling away from them. You don't always want to ex be explaining anything. I didn't want to have to always, you know, I'd be exhausted from it. But I I learnt a little lesson early doors. I don't think I'd do it now in what I know now, but when I remember taking Bill into town and he just I realized afterwards he dropped his little train as we were going out the front door and he couldn't tell me and he was just distraught. And we were on the bus and people were frowning at us people were tutting at us somebody asked us to get off the bus they were too naughty was too noisy it was just horrible i had the most horrible experience there and you know, it happened like it was happening quite a lot with different things. And we went on to Brighton Pier and they had a baseball cap embroidery stall. And I had I'm not naughty, I'm autistic cap made for Bill. And the next day time I went out to town and he put it on and I got on the bus And I couldn't believe the change in people. I was like, oh my God, it was unbelievable. They were like, oh, You know, come sit over here, or oh, bless him, which was a little bit patronising.

Mark

But take the patronising over the judgement.

Sam

No, exactly. They were saying, Oh, my neighbor's son's autistic, or my auntie's boy's autistic, or suddenly it opened this dialogue.

Mark

Oh, interesting.

Sam

And that's what when I realized then, that was my start of saying, No, you won't turn your back on me, I'll educate you. Because actually most people which come across as rude or ignorant is actually That a fear of not really knowing how to deal with the situation.

Mark

And they also make massive assumptions about the way your child is behaving. Based on a lack of knowledge. So you are basically going literally signposting it. Here's the knowledge you need. Back off. Which is wonderful. But again, you knew quite early on. And so you were able to advocate for that quite early on. Whereas we didn't really know. And I didn't know that Jay wasn't enjoying those situations. So we'd take him to those, and then, you know, he'd kick off, or he wouldn't enjoy it, or there would be some kind of flashpoint that we'd have to leave pretty quickly. But we didn't sort of piece that together. And again, over time, We'd sort of isolate a little bit more. And even when we're trying to have conversations, because you have playground conversations with other parents, right? And I noticed that I just wasn't getting time to talk to people. Because I was perpetually unavailable because I'm trying to chase Jay because he's um there's some flats near their school, and he'd be looking through the window of the flats like, Dude, that's someone's house, come back No one kids would dream of doing that. Exactly. So I'm having to go chase him down or something so I'm stressed and I'm unable to be fully present. So even if you are having a chat with me, I'm shit company because I'm on edge permanently. I'm not really listening to what you're saying, much as I'm interested by what you got over up to over your weekend. I've got my eye on Jay over here. or Otto, who is incredibly anxious and needs constant interaction to feel safe and regulated. When I've got two of them, it's like, dude, just give up on all society completely. And even the ones that I knew from when they were toddlers and before it was sort of so pronounced, I think, even them I fi I find found just sort of drifting away, particularly at school. Because what what would happen is that their kids would would go into the classroom and they would find other kids you know, kids who wouldn't pull them off a climbing frame by their hair when they've felt some level of injustice. You know. They would find their own friendship groups and then they would meet those parents. And so we're just gradually falling apart, being more and more isolated. From society.

Sam

And it does come from other children as well. Bill never really liked the park. So we again, we never made him do anything he didn't want to do. And one day on the way back from the shops, he said, Can I go to play on the swings? And we said, Yeah, of course you can So me and Paul were just sort of on the sidelines watching him and I just remember just feeling so overwhelmed with happiness. He was just charging around with all these lads and he was just running around and they were up and down the slide, they were on the swings and everything. It was brilliant. And then all of a sudden Bill just walked over and he came back and I said, What's the matter? and he went, I'm going to go home. I said, Oh, what's the matter? And he went, They just came up to me and said, Why are you so weird? Why do you talk weird? And I remember just thinking, he didn't look any different to me. Anyway, and it was like they had this zoning. And if those children are then, because I was friends with some parents who actually came up and said. you know, George doesn't want Bill to come round any more.

Mark

Yeah, yeah.

Sam

And it wasn't them turning their backs. They were doing what was best and what their child's wishes were. So there was again that trying to fit Bill into a mainstream school with a group of peers that weren't his genuine peers.

Mark

Yeah.

Sam

And it's just it's it's difficult.

Mark

It's heartbreaking 'cause I'm sure we've all had it. Yeah, playgrounds. God, you've just brought back some quite triggering memories of Yeah, where people are just, you know, because you want your kids, you want your kids to succeed socially. You really like, you know, go on, son, just, you know, just Be a bit more normal. And but he's not because well, he is being normal for him. He's being normal for him.

Sam

Yeah, exactly that.

Mark

And but it's like in the early days, you just Really willing him to succeed at society. And so when that kind of comes back, and then, yeah, like weird, when they're called weird, which you know, that Jay and Otto got in the early days, it's heartbreaking. So again, you know, you you find yourself just being on the outside, I guess. You know, you're on the outside looking in, I think is the best way of putting that. I've been going through this for a couple of years, and I was in a bit of a bit of a low place, I think, because I needed interaction. I needed societal interaction. I didn't really have, you know, because I thrive on Talking to people is important to me, and I'm gum galvanized by it. Tam was less bothered by it because Tam is now Or diagnosed autistic ADHD, so he's absolutely fine with just like one-on-one conversations. I want to be social, right? And I wasn't getting that, and I was in a bit of a low place, and there was a turning point for me. And it's a very clear turning point because it's written in my diary. I know the date of that turning point. And that was the 27th of October 2019. And that was an event at a hotel in Brighton called Coming Home to Autism. I don't know if you remember it.

Sam

I do.

Mark

That was the first time that I'd ever gone To an event on autism. It was still like, I wasn't sure. I wasn't convinced. Tam knew. Tam had been sort of Feeding me very heavy hints and trying to have conversations. I was like, Yeah, let's just wait and see, let's wait and see. And I think I was Probably quite reluctant to go because I was still in that sort of grey area of like, yeah, he might be a bit different, but he might just be, you know, he might grow out of it. I don't know. I knew nothing back in them days. So Tam put me up to it. Because they had been doing a lot more thinking than me and a lot more research than me, and I think knew that I was struggling to make sense of it all and knew that I needed to talk to other people about it. So, sort of gently nudged me towards this event. And I remember just almost doing it to humour Tam of going, all right, I'll go. All right, fine. And To be honest, when I approached that place, I felt like a bit of an imposter. You know, like I don't know if other neuroshamblers have experienced this, of just going He's probably not autistic. I'm just, I'm probably just being overdramatic, or you know, and I'm gonna walk in there and go, Yeah, no, this is not like my lot at all. So I'd sort of walked in there probably not sceptical, but not as uh not as sold as I could have been. And I went in there and and I sat down at the far corner of the room at a table. And that is where I met you for the first time, Sam. Now, I am almost certain you won't remember the encounter because you meet loads of people in my situation online and in person. But for me, that moment was a game changer.

Sam

Oh, it's so lovely to hear. That's really good to hear.

Mark

Because I think, you know, there was probably like 100, 200 people at the event, something like that. But you were there representing mASCot. You had a little stall there selling your ware. Come and join the gang. So. we had a chat about how I was doing, which no one really asked me. You know, my conversations before then were m just like, you know, oh, what are your kids doing? You know, uh, have they done this yet? Oh, are they into this? Are they into football? All of that stuff. You asked me how I was doing, and I was like, Oh, and I had to think about it for a second. And you asked me why I was there, and I I think I just sort of opened up and you got it because you've been there, right? You've been on the same journey previously. So you could understand what I was going through and you could empathize and That was really important to me to be seen, right? To be listened to. And you encouraged me to talk about it, and you didn't, because normally, if I'd even strayed into that kind of territory, people would just sort of nod awkwardly. not know what to say and then just walk shuffle away.

Sam

Try and change the subject.

Mark

Yeah, yeah, exactly. Or worse is that he'll be fine. That, you know, you're saying people, you know, people when you were talking to people about Bill, they try and put a gloss on it, don't they? They were trying to gloss over it and just go, oh, yeah, he's fine. You know, he's just getting there in his own time. Or what, you know, you hear all this placatory language, which is just not helpful because you're not validating what I'm trying to say. It's taken me a lot to be able to articulate this, particularly being a man.

Sam

in the first place with the you know, like you say, with just a load of strangers. But yeah, it took a lot to do that in the first place.

Mark

So Yeah. So to have someone listen and understand it and not be saying I was overthinking it or I need to be more strict with him. That was the other one you get sometimes. All of that shit. That was really important. Another, like, really like, and now I know your story about Bill and the hat. A Bill and the baseball cat. This makes more sense. But one of the really unexpected takeaways from that event is the mASCot card that you gave me. Because I think part of my conversation was like, you know, I like he's just people are judging me and him, and it's really difficult when he's having trouble in public. And and you said, I've got some cards. And I was like, what, like business cards? And you you got a mASCot card out. And obviously, no one at home knows what a mASCot card is. Explain what the mASCot card is for everyone, please.

Sam

Well, I won't take credit for the idea of it because the National Autistic Society do them. They're all this person. I've never seen one for children. So I think that they were designed originally maybe for carers who are with nonverbal adult autistic people to communicate. So I wanted to design one. So we did a lot of talk on the forum of the wording that was right for all of our parents' views, and we tweaked it and worded it. So it's I've got on here, it says, My child is on the autism spectrum. Please be understanding. My child is not a bad child and I am not a bad parent. My child is having a meltdown or showing unusual behaviour because of their autism. Please be tolerant and understanding of my child's needs. Please support, don't judge us. and then it links to our website where they can find more information. And then on the back it's just got how autism affects children in many different ways. around how they might feel you might feel they're ignoring you or strange behavior, flapping, that they might exhibit different things that you're used to with other children. So it's a little bit of like few categories where you'd want people to use it would where parents can use it is is that if somebody has been really judgmental and saying be stricter, give them a click around the ear roll, which I've heard a lot of the old school people say. Give them that. It's like a go away, mind your own business, go and find out for yourself. Sort of get you know, get out of my space. If you're not going to help, go away. But like I said earlier with the hat, there's actually a lot of people who freeze. They don't know what to do. They want to help you, but they're not sure whether you can approach them or not. So by giving them that is also an opening for somebody to go, Oh, I did think I wondered whether they're autistic. Would you like me to help you? Or is there anything I can do? So you get a different reaction from people. So you have people who will always be helpful, but don't quite know how to approach you.

Mark

Yes.

Sam

And I think that's a it's like a key. It's a way of opening that.

Mark

That judgment. Just is you're giving context to what they're witnessing and you're sort of shining a light on

Sam

and it's a gauge of what somebody's staring or frowning at you for because they will respond to that card either oh and walk away or like oh That's really interesting.

Mark

Yeah. It's a bit of a either help out or piss off.

Sam

Yeah, one of the two, totally.

Mark

Yeah. But when so when you gave you gave me a stack of them Because you obviously looked like I needed thermal idea to take the lot. Somebody who's been in that situation in many a venue. And it felt weirdly empowering. Just to have it in my pocket, just to be able to break it open in case of emergencies. Just have a tool that I could use in those situations. That I didn't have to think, I didn't have to overthink. It's like, okay, I'm already dealing with this shit. You take a card, I'm going to, you know, do this. And they would be more aware of what was going on. And I always envisage in my head. Of using it whenever people were being awful and judgmental in public. Just like skipping liberally through Asda, like scattering them like confetti, fuck you, fuck you, fuck you.

Sam

Oh, the idea.

Mark

Exactly. And I kind of envisaged it being like having a crucifix and holding it up to a vampire and watching them shrink back into the shadows. Dissolving there and there in front of you.

Sam

Yeah, exactly.

Mark

That was how I envisaged it. I've never had to use it.

Sam

Is that a good sign?

Mark

That means you're going around the right places. I know, genuinely. It gave me a confidence. Do you know what I mean? Like I did, I don't know. It's difficult for me to describe, but I've never just knowing it was there was enough. I think. And that, you know, sometimes if I do need to say anything to anyone, I would say, look, you know, he's autistic and he's having a meltdown. Can you just give us some space? That was usually enough. But it was almost for me like I got a permission slip to advocate for my child.

Sam

Yeah, brilliant. And I think the other thing with it as well is and you've probably been in this situation so many times, whether you're at a social event or in a a bit of a panic situation going on. Somebody will come up and say, What does being autistic actually mean? And we've read reams and reams of stuff, but nobody's ever put it down onto a nice little contained cards that you can suddenly go, that's what it is, that's what it is. So for you as well, sometimes not many people really know how to explain it to the layman.

Mark

Yeah, yeah, yeah.

Sam

Because we've got so much information on our heads about it. So to concise it down into one little bit of

Mark

I've got a literal list of bullet points here. I'll give you the bullet point format. And there's a website you can look at if you want more information. So that conference, that encounter, was the start of my journey into advocating for my child, I think. And it came from talking to someone who's been there. Yeah. Because there are so many people that I talk to who haven't been there and they their advice, as you were saying, stuff that people would you know, the parenting advice you received when Bill was younger, it doesn't me it's meaningless. It doesn't apply to my child. My child is wired different. And that's fine, but when you have a conversation with people who do get it, that's really galvanizing and nourishing and important in helping you feel seen, I think.

Sam

Yeah, wonderful.

Mark

There was one other game changer that happened that day. It was a big day that day for me. It was. It was a wonderful day. There was one other game changer. In the conversation with you, is that you mentioned a thing called Sunday Club, which I did not know about. And Sunday Club was a local thing. and it was a group run for parents and their neurodivergent kids. And I was like, oh, that sounds interesting. And you Sort of, you know, there wasn't much detail around what it was. It's just for, I think it was sort of pitched that the parents just kind of get together and have a coffee and their kids could play. And you know, just be around people in a similar boat, right? And that sounded great to me. So I went back home from the conference and I was like, let's take the kids to Sunday Club, right, next week. So Tam was like, Yep, fine, we're up for it. And we went to Sunday Club the next week. And it's no exaggeration to say that that probably changed the course of my life. For multiple reasons. Because I d I had no idea to what to expect when I turned up. Like I've been to, you know, groups With kids before, my kids have never really fit in, so I turned up sort of expecting that, maybe. And I walked in, and it was absolute chaos. It was yes, absolute carnage. And I was like, oh, I'm home. No, but it was that no, I'm doing it a massive disservice there. There was so, so much going on there. So, in one room, there's a massive table full of arts and crafts. And there's a table that's got comics, Pokemon cards, and plushies, and bubbles, and a whole Fidget toy zone, and in the hall, which is massive, there were hundreds of balls and toys and a pool table and things to play with. There was a table-tennis table, there was an outdoor space, there was even a sensory room in there. And amidst this mad scene were just loads of neurodivergent kids using the space in so many different ways, just exactly as they wanted to.

Sam

Yeah.

Mark

Not always as intended. They were just doing their own thing. So some were really quiet and focusing on something intensely. Maybe they got ear defenders on and they're, you know, like sorting Pokemon cards or something like that. Others were Just loud and boisterous, usually my lot, but throwing balls about or firing ping pong balls at each other. And some were just walking from room to room or spinning. from room to room, stimming and fizzing, but just being who they needed to be. And I'm pretty sure. That any neurotypical family that walked through that door would have probably taken one look at that scene, turn back straight around again and just run for the hills.

Sam

Totally.

Mark

Like, let's never speak of that place again, darling.

Sam

There was always one thing missing from the group, so what was that? No parents frowning at each other about each other's children.

Mark

It was amazing.

Sam

Just non-judgmental.

Mark

environment is just wonderful. That was the thing that I took away the most from that. Is that lack of judgment? So it felt so liberating at the time. And it's crazy to think of how rare that was for me at the time. Of being in a place without judgment.

Sam

Yeah.

Mark

Like, I don't think that I realized how much that had affected me Or, how, you know, I'm always on edge, right? I'm always thinking, oh shit, where's Jay? Who's he? Like, I'm reading the body language of the person he's with, or the child he's Standing over, right, or whatever's going on. I'm constantly on edge. And as soon as I was in that space, I didn't have to think about that. And like, if he's like really close to someone and talking in their face. They got kids the same. Do you know what I mean? I've got their kid in my face, and no one cares because we get it.

Sam

So our first club years ago was when Bill was probably about 11, 12. And the the the first original I think there was only we only had about eighty members, eighty or a hundred members then, versus two thousand four hundred we've got now. So that's how much we've grown. But all of our children were really isolated. They weren't going out at all. They were just all on their DS's. That's how long ago it was. They were all on their old DS game. So we managed to get a venue and we just said, let's just get our kids, even if they all sit in the corner, us parents can get together. But the kids were out of their bedrooms and it was really it was unbelievable how quick literally within 25 30 minutes you notice that all the kids knew they were in a really safe zone and they were with their actual peer group and the the atmosphere was just unbelievable and the next minute one were going sitting at their interest what game they were playing. So that was our first club. Mimi came along to that one and then ended up getting part of becoming part of our mASCot team. And she was the one who pushed more of let's get our youth projects going as one of the biggest things that aren't being provided for us. So we started our teen club, which Mimi and Monica ran, which was just brilliant. And then I've known Jo since our boys were tiny. but she wasn't part of mASCot, and then she came into the library and said, Have you got a girls' group? and we went, No, but if you want to run one, we've got the funding if you want to do it. So she then started a girls' group, which then escalated to our Sunday group. But for primary age

Mark

Sp, splinter groups of these, you know, like with a similar ethos, right?

Sam

Yeah, yeah. But it's about parents 'cause the whole point of it is is is about helping ourselves. So all of the groups we run are run by our mums and dads who we get the funding, we provide it. So That's why they work because they're real parents who've experienced how isolating it can be. you know, our children and there's some amazing pan-disability clubs out there, but our children know that they're not in a wheelchair, they know they haven't got a learning disability, they're autistic So they want to be with fellow autistic people. You know, and it's there's nothing else out there apart from what mASCot provides for it's it's interesting that it sound

Mark

It sounds like you started it for the parents, but then the kids were like, hang on. And so watching that happen in real time, having only ever previously seen your children struggle with social interaction. or be called weird or ostracized, like watching them sort of come together and connect on a different level, and a neurodivergent level

Sam

Yeah. It's priceless. It's priceless to see. And I don't think many people get that that those environments are and They can't be sort of manufactured by other people running things. You know, Joe gets it so right, Mimi gets it so right because they're so free-spirited that they allow our children to be, like you say, no rules. No.

Mark

Yeah.

Sam

Not many boundaries. Obviously, safeguarding's in place very highly. But you know, it it's got to be an environment that our children thrive in. Otherwise, you might just send them back to school in a place where they've got to sit in the corner and be quiet. And it's just that's why they struggle.

Mark

So you've mentioned Jo a few times.

Sam

Yeah.

Mark

This is Jo Matthews. So Jo Matthews is the person that I did the first ever Neuroshambles episode with and she's a Neuroshambles fan favorite. But Jo was kind of pivotal for a number of reasons for me of Jo. So Jo was the person that ran Sunday Club.

Sam

Yeah.

Mark

I would say organized Sunday Club, but it was It was unashamedly disorganized. And that was the whole point, right? So it was like Jo was curating the whole thing. And The way that she had created this unique space, and I'm aware that that's just when I came into it and Jo was leading there. And I know that you did similar things, and Mimi did similar things, and you know When I first walked into that space, it was Jo there in all of her colours. And as you're saying, it's so wonderful that people Volunteer for this. They do it off their own backs because they see that gap in provision, something that people need that isn't out there. Either you just sit there hoping it's out there or you somehow summon up enough spoons to make it happen yourself.

Sam

When you've got a lovely base, like mASCot is like, like I say, the the the base of everything. Some people wouldn't even know where to start about starting a club up, but they've got the energy and the need and the want to do it. So this is the ideal opportunity Opportunity where families can come and go. Oh, actually, I can start now because I will have other people supporting me. I've got like a backbone to it because we've got like a Lego club. We've got all different clubs. We've got a cafe that we we run to for kids over fourteen to learn barista skills and have a you know, a community within that when they're not at school or not at college. You know, and it is it's it's where there's a need. We if we've got the parent and the manpower to do it, it we can do it. We can all do it.

Mark

Yeah, and it's um it's a wonderful thing. And it's you know, it's not just in Sussex that these things spring up. They happen wherever there are parents of neurodiverging Kids who were also just sensing this need. I had an email from a Neuroshambles listener. I mean, I get quite a few emails from people, and they are all wonderful, but this was just like my favorite email ever. Because she'd listened to a conversation that I had with Jo Matthews, where Jo just went, Ah, just get off your ass and do it. I don't think she said it in such a blunt way, but I'm paraphrasing, obviously. But there was the sentiment. I think we all know the sentiment there. And I had an email from Hannah Woods. And I'm going to read it because... you'll understand why. Listening to Neuroshambles helped me realize I wasn't alone in my experiences and that maybe I'd even become a bit of an expert, at least in my own child's journey. So armed with inspiration and a bit of courage, I launched Spectrum Squad Penarth. which is a neurodivergent youth group supporting young people in mainstream schools, years five, six and seven, as they navigate the transition from primary to secondary school. The hope is that by building a peer network, they'll see familiar faces and feel more confident accessing support during this big live shift. And then she goes on to tell me more about that and a shout out to her two collaborators, Anna and Harriet. This was so uplifting to me that a conversation, a sweary conversation that me and Jo had, then got someone else going, oh. I could probably do that. I mean, it doesn't sound like Jo's got her shit together.

Sam

So anyone could do it. I'll do it. I've got it.

Mark

Yeah, exactly.

Sam

Oh, that's amazing.

Mark

So she started this. A whole thing off the back of just listening to this conversation. Now I know that the majority of people with neurodivergent kids don't have the capacity. You know, I'm not expecting other people to do it. There's no expectation. But I think if you're looking for something that doesn't exist Then talk to like minded people and see if you can make it happen. Which is exactly what happened with mASCot, right?

Sam

Yeah, it is. And it's just all for parent power. So if Hannah wants to contact me at any point then if she needs any guidance, that would be brilliant. Oh, yeah. Could you have a a mASCot franchise in Wales? I'm brewing up somebody in Majorca at the moment to start one

Mark

mASCot in Majorca? Oh my god.

Sam

Yes, so that'd be quite good. But I think it is just taking that step forward. And one of the biggest things I can say, and I know that all of the people who've worked and come forward the amount of benefit we get as well. You know, we're building a community that helps us. It's not just us helping other people. We're getting just as much back. So when you are frazzled to go and spend that time and everything like that, it's not it's a lot of work, but it's definitely not a chore.

Mark

Yeah, because then you start surrounding yourself with that community. You're all.

Sam

With our genuine pay.

Mark

Yeah, that these are all people that, you know, if you are having wobbles. about stuff, you can contact people. I I you know, with Neuroshambles, weirdly has become my own community.

Sam

Yeah, yeah.

Mark

You know, that I regularly kind of reach out to guests that I've spoken to and are like, dude, have you got any advice about this? And it's really important to find your people, right? You know, like that was the thing about Sunday Club for us is that we could sit and have a cup of tea and a biscuit with other parents not feeling judged, not really having to hover over our children, which is a massively underrated experience. And you can talk to other people about The things that we're all facing, you know, their kids' struggles with friendships, or difficulties at school, or the diagnosis shit show, or parenting techniques, or just whinging about unhelpful family members. That's all so important just so you don't feel so alone.

Sam

It is.

Mark

One of the other massively important ways of us being able to find our people and to build our community is online. I would think that's probably the most important one for a lot of parents of neurodivergent kids because it's not easy to get the time or the capacity to meet up in person for loads of reasons. It's difficult to find babysitters who are neurodivergent friendly, or your kids just can't face leaving the house, or there might be other siblings that you have to manage in that, or you just fucking knackered and you can't face it yourself. But obviously, it's not as easy as just going, right, let's just pop over to this thing. It's you know, there's a lot of negotiation that is involved in making that happen. So to many, many people, the online community is invaluable. And that's where mASCot comes into its own, I think, the mASCot Facebook Forum.

Sam

It does. It changes the climate slightly because originally everybody who was on our online forum had all met in person.

Mark

Okay.

Sam

We'd all come from originally the coffee mornings and then people we met of events and shows and you know, different settings, and then there was like a a big burst of obviously just need. A little bit like you said before about feeling a bit of an imposter when you went to the Grand Hotel. people feel like that in mASCot or they don't know where they belong because they were in that limbo place. And we're really all of the statutory services only provide after diagnosis post diagnosis support, very few before. So we're really like, as soon as you got an inkling that there might be something there with your child, you're welcome to join mASCot. And that's for one, because the earlier support you get and learn strategies and make those connections, the better you're going to be at being a parent and learning those skills and ways to approach your child. But also there is a little bit like you said, you're either going to join mASCot, read everything and go, nah, this isn't what I mean. Yeah, yeah, yeah. Oh my God, th I'm 100% sure.

Mark

I can't believe that there are many people that have gone to the effort of thinking their child is neurodivergent and then going, oh, no, I'm wrong. They usually have it confirmed, right? Because if you're even thinking along the lines of something is very different with my child. Something's very different with your child.

Sam

Yeah, and like I say, of the thousands of families we've had come through, a lot haven't got the diagnosis at the end. but have persevered and then finally got it through appealing and appealing. So yes, it's not because the child wasn't autistic. It's because, again, failure of the services and especially girls with late diagnosis with girls and You know, there is, but no, so everybody joins mASCot for that community. And again, we've got lots of different categories. You've got some people who just sit behind the scenes and read everything. don't post. Some people who are prevalent posters, other people who, you know, come to everything like real time onto our clubs and or on the forums. So it ticks all the boxes for whatever anybody needs.

Mark

Well that's why I think it's so important. I think sometimes pe where certainly when people are not sure, it's really valuable to just look over the fence. Right? Just to just to look, if for want of a better expression, and see what people are talking about and what they describe, because that's when things resonate. That's when you read something that someone else is talking about. They describe their experiences, and you're like, that's totally me. You know, that article you read in The Guardian that that completely described your experience with Bill, it's only when you read that in someone else's words and go that's the little light bulb moment. And there's no pressure when you join an online community to you don't have to out yourself, you don't have to post anything, just sort of sitting and watching quietly collecting information is so important.

Sam

The amount of people who feedback, what a lovely vibe mASCot's got. We don't get any trolling. We don't get anybody jumping on somebody for having a different opinion. Every so often, you'll feel something brewing, but I go in there Quite strong with that. We're not here to judge anybody's views. You know, everyone's at a different journey. If you're new at your journey, you might say things in the wrong terminology, or you might be looking for that cure. You know, mASCot's not about curing our children, it's about celebrating our wonderful, diverse families. But if somebody new comes in and use that term, you don't jump on them, you start educating them, you don't turn your back on them, you change, you create that knowledgeable sort of environment. And that that's something I feel the most proud of is that I've created a really bonded community.

Mark

Yeah, yeah. I think that's the benefit of having Uh a Facebook group that is an online community for local how do I say local people? That sounds like League of Gentlemen. A local forum for local people.

Sam

Well, it feels like we actually are in that sometimes.

Mark

Yeah, yeah, yeah.

Sam

Some of the conversations I've had is quite amazing. But it does. It means we're all talking about the same schools, the same services, the same local authority. So there's that connection.

Mark

That Facebook group has been incredibly important to Tam and I because it's local and it talks about local stuff. So when you're asking for advice on diagnosis pathways and how people navigated their own LAs because each LA has a different experience. So if I'm going onto a Kent forum and asking them, their advice isn't going to pertain to what we're dealing with. Experiences at local schools. For example, if you're looking for transitioning to another school, you speak to other parents about what that's like. Recommendations for tutors or educational psychologists or OTs or clubs that kids might be able to join and that has always been really, really valuable of what is available locally. And I am sure, well, I know that there are lots of other local groups available elsewhere. I know that Bristol have one, Bristol Parent Carers Forum. I am doing some talks for at a conference in March. Actually, after this has gone out, I have just done a talk for Bristol Parent Carers Forum. which is a phenomenal event, and they've got a really vibrant network. And I know that Sheffield have a network and so if anyone is looking to connect with an online community and you haven't already done it. I'm sure that lots of neuroshamblers has already done it, and I'm just preaching to the choir here. But if you haven't Do a little Google, see what's available, and go and join your local community because there's so much useful stuff there. One of the major things that helped me from the mASCot forum was when I was having real battles with Jay. So I was locking horns with Jay quite a lot in those days because I was, you know I've talked about this on the episode I did with Terry Lloyd about the dad experience, but I was being authoritarian and, you know, just like, you know, naughty corner and that shit. And I'm not proud of it, but I was really struggling with what I perceived

Sam

It's a rite a passage.

Mark

It is, I think, sadly for all of us. But I basically just put a post on mASCot and went, I'm really struggling. How do I deal with this defiant behavior? And someone got back to me on that post and recommended the Explosive Child book, which I've mentioned so many times on Neuroshambles, completely changed my perspective on parenting him, but also said maybe you might want to look into PDA as well. So that opened that whole can of worms. But these were really vital clues in helping me to understand Jay's neurotype that I would not have had if I wasn't part of that community. And If people didn't treat me with compassion and support, right? Because they could have gone, what are you doing? shouting at him. That's the worst thing you could do. Like, you know, just like kick off. But they weren't because. again. They've probably all been there and they've all done it.

Sam

That's right. The biggest thing for me was is when lockdown came.

Mark

Okay.

Sam

The extent of how that affect Everybody, suddenly being in this, you know, uncharted territory we all went into. But we've got families who have got four autistic children who are single parents in a one-bedroom flat with no garden. and their only window to anything was mASCot. Their only support, their only adult conversation when they got their children into bed was coming onto the forum late at night. And having some contact. So, you know, Muskot obviously wasn't set out for that because it'd been going for years, but what people didn't realize is the conversation I probably have the most with any parent is my child spends too much time on the computer. And when lockdown came, the amount of parents said, I get it now, that's their only window. sometimes to make friends, to communicating, having that confidence to get involved with groups so they can't do it in real time with real people because it's it they they can't do it. And suddenly when you take away the world outside you, which is quite a a normal state for our autistic kids, you find that such a daunting place to be. they actually all realized why that's so important. So apart from it all being a communication of us all meeting online, it was a learning curve where That conversation happened a lot over lockdown, like blow me how my view my views change a little bit. I know why, you know, and and it was so There was a lot of learning going on that we could all learn together because we had that instant communication with each other. We didn't have to wait till Tuesday when we all met at coffee morning and talk about it. we could just all, you know, type away and communicate then. So that was a real actually quite an amazing time in lockdown, being that close to everybody.

Mark

Yeah, it just sheds a completely different light on things and helps you see things from a kid's perspective. That's wonderful. Now, one of the trickiest things about finding your people that isn't often spoken about Is that you very often need to let go of people who aren't your people. Who aren't supportive of you. which can be a really difficult thing to do, especially s if they've been with you for a long time, you know, if they've been friends for quite a while They might be close friends, ev very often family members actually, who when you tell them that you suspect your child might be neurodivergent, they you know, they all the typical bullshit. They try and convince you you're making it up or that you're not parenting in the right way or the worst ones are the ones that question the entire concept of neurodivergency itself. You know, those ones who are like, oh, I think it's a fad. Oh, it's not a real thing. It wasn't around when I was growing up. All of that bullshit. And I think when that first happens, you still feel obligated to be around these people, you know, especially family members. And a huge part of finding our people is about losing people who are not our people. Have you had much of that experience?

Sam

There's that famous saying that friends come into your life for a reason. Some come because they need you. And once they've had their need filled, they'll go some come in 'cause you need them, some will stay for life. I found that in my whole life journey anyway. Friends come and go and they're transient. I've got friends that I've had from school that have stayed my friends. And they've stood by my side with everything with Bill. And I think maybe it's because the way my brain is a little bit out of sight, out of mind. If somebody didn't really mean that much and weren't feeling a need for me, I don't think I'd have even noticed them going. or if they were judging me and went, I probably would be like, Well, they they weren't worth anything to me. But my friends who stayed with me forever are are the world and I'd do anything for. And they get Bill, they understand Bill. So I don't think I've ever really noticed that slipping away.

Mark

Okay.

Sam

Again, I think that's a little bit because I realized in that

Mark

Because of who you are. And your approach to life, which is great and wonderful. And not everyone has the awareness or the confidence to do that. I'm one of them. I hate confrontation and I hate upsetting people. So for quite a long time, we held on to some friends that were not the best people for us to be around. And The tricky thing really is that there were some people that they didn't even say anything negative necessarily. They're just not listening. Right. Where you would explain what's going on, you know, with your child and you would try and help to educate them a little bit so that they could bridge the gap in understanding that you have and that they have. But it can be so infuriating where they just ignore that and go, Oh, you know, well, great. Do you want to come to the pub for Sunday lunch with us all? It's like, no, you don't. No, that's the last thing I want to do. I can't do that with Jay. He's not going to want to do it. Like, I'd love to, but you're not listening because he's going to get completely overwhelmed, and I'm going to spend the whole of my time trying to manage his dysregulation. whilst watching everyone else have a lovely time in a pub. This is the worst thing for me. And so, you know, it would get to the point where you'd just say, No, I can't do that because of this. Then the next week they'll invite you again. It's like, like, I know you probably mean well. Like, you think you're doing a nice thing, but this is really hard for me. I don't want to have to keep going through this.

Sam

And then you look like the baddie for keep turning somebody down. And then there's that little bit like for me, it would be like I'd be like, What are they saying to other people that I can't be bothered? But it isn't. It's actually like you say, they're not actually listening to your need. That is something you actually can't do. You physically can't do.

Mark

And they're just not picking it up. They're not learning. how they're not learning what you're learning. And so that you'd sort of at some point well, you need to sort of whittle these people. Away out of your lives. And as a parent of neurodivergent kids, let's face it, we do not have the capacity for massive friendship groups anyway. So, you know, if you if you can only really focus on a core handful of people, let those people be fucking excellent. Let them earn it. Be worth it.

Sam

They've got to be a very high bar. They've got to get it.

Mark

It's definitely a case of quality over quantity when you're a parent of a neurodivergent kid. It doesn't have to be dramatic. You don't have to make a song or dance. You just gradually reduce contact. You don't, you know, invite them for play dates or you If they invite you to something that you can't manage, then just say no. Don't have to give loads of reasons. No, thanks. Don't overexplain because that then gets into... You know, you just don't need to. They already know your situation and they've ignored everything you've told them previously. So save your energy. Basil.

Sam

You change as an adult. You know, one, obviously you become a parent, so you're going to change a little bit because of that, but your your high whole life Is suddenly tilted, and it is like you have to reassess of where your energies are going to be And nine times out of ten, your energies will be directed at your children because they're the most vulnerable in this situation. They need all the support and understanding. And if people aren't going to be by your side and give that, you know, I've grew a very, very thick skin very, very quickly of not giving two fucking toots what anyone thought about me. And I came across really prickly to people and it wasn't that, it was just self Survival because otherwise, if I spent my time worrying about losing a friend or every time somebody said something really thoughtless to me. I'd have you know, I might not have been even be here. You know, that's how the impact it makes on people. So for me, it was like to close my world down, keep the most important people there and keep Bill safe. That was my Yeah, yeah, yeah, yeah, absolutely.

Mark

It took me a lot longer to get there. And I get there in my own way. Yeah, I think We should never be afraid of letting go of people who have shown that they are not wholeheartedly one hundred percent on our team. And that's not just for you, it's for your kids as well.

Sam

Yeah.

Mark

Because our kids deserve to be surrounded by people who are compassionate and understanding and supportive. Because there's enough of the other lot out there. They're going to be encountering all of those. So they need to find their people as well. And we need to show them what that looks like.

Sam

Totally. Well said.

Mark

One caveat worth mentioning when whittling people out of your life who are not supportive Is that sometimes it's much more difficult, particularly when it comes to family members 'Cause there's so much more history and there's so much more politics around doing that. And I know a lot of people have had difficulty maintaining distance because you've got it, you know, to gradually reducing contact with someone who is in your close family is... There's a lot, there's a lot there, you know, because there's an expectation and there's an obligation that is that you carry with you. My ex-mother-in-law is a great example of this.

Sam

The butter and no jokes are coming.

Mark

She is a fucking joke, let me tell you. No, but she has been relentless. And I've talked about her on Neuroshambles before, and you know She's my ex-mother-in-law now, so it doesn't really matter. But she has been relentlessly unsupportive of our kids' neurodivergency since we first told her about it. And initially, that was really hard, and we were trying to educate her and we were trying to explain and, you know, and trying to change the behavior, but You know, that behaviour didn't change. So, over time, we've just sort of reduced contact Again, like not in a dramatic way, but we just reduced the number of visits. And we used to sort of go and stay, you know, when Tam and I were together, we used to go stay for the weekend. And that was just awful. It was fucking awful for everyone. She'd be awful with some of the kids And she just it was like no one needed it. And no and her as well. Do you know what I mean? Like she didn't need it either because she was seeing behavior that she was defining as naughty or you know, weird or gross or whatever it was, and was not sympathetic. So then it was like, well, we're gonna not visit for a weekend, or we'll just pop in and out. You know, we'll spend more time driving there and back than we will actually in her presence, but we'll tick off a box. I think of it as being a bit like a traveling petting zoo You know, you think you'd turn up with the kids, you'd let the animals out to run wild, you know, let the mother-in-law at the time, pet them briefly, then bundle them back into the car and fuck off. You know, before anyone gets bitten. But my my parents initially I think saw Jay's behaviour was naughty. My mum in particular would be get really stressed because he would go he would go through the house opening all the drawers. Which, in my mum's mind, is just naughty. Who the fuck do you think you are going in all my drawers? He's just curious, do you know what I mean? And he doesn't know the rules and he doesn't understand why You know, why would you put drawers at this level if I can't look in them? And I explained it to my mum once, and as soon as when we talked to them about Jay's autism. They just went off and did a bunch of research and they listened. They listened to what I had to say and learned. And they are just wonderful with the kids now. And they're just, you know. And so they're in they're on our team. They get to stick around, right? They get to be one of the privileged few that can immerse themselves in the chaos of our lives. And they are blessed to be so. So, ultimately, quality over quantity is the thing. And it's it's very I've heard a lot of stories of of new ashamblers having to go non-contact. With people who have just not shown up for them.

Sam

And be kind to yourself.

Mark

It's a really hard thing to do, but your only obligation is to your kids, really. And if they're going to have a negative effect on your kids and their self esteem and their authenticity Bin 'em mate.

Sam

Totally.

SECTION INTRO

It's not all rubbish.

Mark

So normally with Neuroshambles, we talk about stuff that parents of neurodivergent kids find challenging. And then we end with some positives to round things off on a more upbeat note. But this whole episode's been positive. Really, hasn't it? We're just sort of, you know, talking about how wonderful it is being with like-minded people who are going through similar experiences. And I very much hope that Neuroshambles. goes a tiny way to doing that for people listening to reassure Neuroshamblers that they're not alone in the challenges they're face. We're all going through all kinds of shit. Welcome aboard, right? But a podcast is only really a A one-way medium, unless of course you fancy appearing as a guest or writing at a suggested topic of the week, in which case email me at hello at neuroshambles. com. However, if you are looking for a more interactive level of connection there is almost certainly a local group near you, whether it's a Facebook forum or a WhatsApp group or an in-person meetup. And there are some really niche ones out there as well. One of my recent guests, Dr. Lucy Pocock, found a WhatsApp group specifically for mums in the medical profession that have PDA kids. Like, that is a niche. Like, how she found those people, whether she stood on the street with a sign going, join my WhatsApp group, I don't know. But There are people out there. You will find your people and you will drill down and find the people within those people if you know where to look. So those people are out there just waiting for you to To lurk in their presence and be invited in. So go find them. The other thing I want to look at in the positives is that there are some amazing volunteers out there. People doing it off their own back. They're organizing groups and they're running forums and they're not doing it for money or praise. but because they know how important it was to them when they were going through that uncertainty, I think, and that they want to give something back. And it always astounds me that people like yourself, Sam, And Jo, who would largely kind of through the knottier end of things. You know, they've gone through the really difficult struggles. They now understand more about their children's neurotypes and their children also understand more about their neurotypes. They don't have to be doing this. You don't have to do this is what I'm saying. And I'm just amazed that you are just still wanting to give so much back to the community. When you know you should be putting your feet up in your van and going off around the Algarve or something.

Sam

I should. I've just had my 60th birthday. I should be putting my feet up.

Mark

I mean, please don't. I'm not that's not me trying to nudge you into retirement Sam

Sam

You're just trying to take over aren't you?

Mark

God, no. I don't have the capacity

SECTION INTRO

Neurodiversity Champions

Mark

Okay, we're going to do some neurodiversity champions. Now, I feel like it would be incredibly remiss of me to not have mASCot as a neurodiversity champion. for this episode. I mean, obviously, this whole episode has been eulogizing mASCot and saying how important it is. But just tell me a little bit more about mASCot, what you're currently doing and what you what are your plans? What are your dreams for the future here, Sam? Because you're not resting up, are you? Let's face it.

Sam

No, still at it, still going strong. So at the moment, over the years, we've run a lot of projects where we we've done equine therapy, swimming clubs, all the things that come up on the forum that we need. And that's all been that we've had funding in the past. Things change with lockdown and funding's harder to get. So at the moment, we're just running our staunch groups, which is our Team Plus, our Lego Club, our Cafe, our Tuesday Club. We've got Dungeons and Dragons and a few little peripheral ones that we're doing, plus my workshops for family support, parent support and my one to ones. But if we had the funding coming in again, you know, we'd have at the moment our teens club isn't running because that we haven't got the funding for it, but that's one of our main ones that have been like running for years. The workshops that we do direct for parents, for strategies, we'll be able to build on more of those and all of the clubs would have to be able to have more or bigger venues so we could accommodate more youth projects within it. So there's loads of things. But with Muscott we work quite holistically within what the forum and the membership need. And we're always being asked if there's different things we can run, and at the moment, we're having to say we haven't got the funding or the capacity at the moment to run those. So funding coming in is paramount for us to be able to sustain the things that we're actually doing.

Mark

So you've got volunteers to do it, but obviously it's the Funding of the venue or the equipment or whatever it is that just means that it's not available at the moment.

Sam

It is, and it's really important for the funding to come in because when we start a project, that becomes and anyone with an autistic child knows there needs to be that regularity, that that's like on a Tuesday, I need to go if we if we're going, oh, sorry, we can't run it for now, or you know, obviously there's always going to be unforeseen Things, but to have that sustainability for the things that we know are the core things that keep mass work, really, really important for us to have. money coming in.

Mark

Now as part of Podcast Thon, the idea is to shine a light onto various different community groups and charitable enterprises, of which mASCot obviously is one. Now I am aware that the vast majority of listeners of Newish Embles are not based in Sussex. So, you might not benefit directly from mASCot services, but if you've been inspired by Sam's story in any way And I defy you to not be. But if you feel able to donate any money, no matter how small In recognition of the excellent work they do, it would be enormously appreciated. You can donate on givey. com/mascot. That's G-I-V-E-Y. dot com slash mASCot. I'll put a link in the show notes in case you haven't had a chance to write it down. But anything that you can donate would be greatly appreciated if you possibly can.

Sam

Wonderful. Thank you.

Mark

So obviously mASCot is a neurodiversity champion. Have you got any neurodiversity champions for us, Sam?

Sam

I have. Apart from my lovely team that's worked with me, they'll always be my champions. I just think that it has to be my lovely Bill, who has taken on the baton and Created his own group to support Autistic Adults in Brighton and Hove.

Mark

Okay, so he's actually now starting his own thing going, I could chip off the old block. Amazing. Tell me a bit more about that.

Sam

Our teen group goes up to eighteen. We were having children go to that who are a little bit older, but there was also you know, the practicalities of having fifteen, sixteen year olds and twenty year olds together. They don't you know, they want different things and yeah but the reality is is between me and Mimi with that, we haven't got the capacity to go into adult support. So I spoke with my Bill about setting up an adult social network within Brighton and Hove.

Mark

Okay.

Sam

So Bill and his fiancée Lee have started up the BNC, which is the Brighton Neurodivergent Community. which is for adults between eighteen and forty. Of eighteen to thirty, but then Bill realized he was getting to late 20s, and he's 29 soon. So he went, Oh, let's have it 40.

Mark

Also, you don't want to be advertising 18 to 30 for autistics

Sam

no, I know, I did actually But it's done absolutely amazing. So their groups, which they do pub meets, sober nights, bowling, cinema, they do Puzzles

Mark

And Bill has paid it forward.

Sam

Now Bill is now taking it on him being his own neurodiversity champion. Chip off the old block. So I'm really, really proud of that. About three years they've been running now and they've got a a nice big membership, they're getting really popular. So therefore, autistic adults without learning disability who are able to go out, don't need carers or any befrienders with them, they just maybe didn't have the friendship group or the confidence to go out. So they can meet online, grow their confidence up, get that network around them. So that's a real big milestone for mASCots. So Parents can come to us when their kids, however young they are, be supported all through their parenting until their children are adults, and then there's a community for those young adults to move on to, which is all inclusive, nonjudgmental. And it's just for me, that's been a bit of my dream, is to have this just constant community that everybody's welcome to. And we, yeah, I think we're fulfilling that at the moment.

Mark

You definitely are. That's wonderful.

SECTION INTRO

Tiny Epic Wins

Mark

Tiny epic wins now, these are the things that in neurotypical families would be considered no big deal. But for a neurodivergent family, they are epic wins. And I always like to shine a light on these. So do you have any tiny epic wins for us, Sam?

Sam

Well, I wouldn't say it was so much tiny. I just think a little bit we've covered a lot through it is about there's a normal course of life everyone just presumes their children will do. And like I said, Bill didn't speak till he was six. He struggled with lots of things. I never thought he'd leave home. Me and Paul thought he'd be with us and which was fine. And Within the last few years, he's left home. He's bought his first home. He works with adults with learning disabilities, which makes me so proud that as part of his job he's given something back. And he's getting married in May.

Mark

Amazing.

Sam

They're not little things, but they're probably things people just take for granted that their children will automatically do. But when you don't think your child. would ever get to that point. So all of that all come together in one bit. So they are wins.

Mark

That's a massive, massive win. Yeah. I had a tiny epic win just on Sunday, um, where, I mean, I'll I've been just feeling really frazzled lately, and I just was feeling really not great on Sunday, which very rarely happens. I'm very rarely ill. But I just woke up in the morning and I was and I just felt rubbish. And I had grand plans. We were all going to go swimming. I was like, I can't, I don't even think I should drive. I was feeling that off. And I said this to Jay and he went, Let me make you a hot drink to pick you up. Right, which is very unusual for Jay. And I was like, all right, yeah, that'd be amazing. And he went, leave it with me, which is always troubling. Thing, right? Leave it with me because he doesn't make hot drinks. He doesn't drink hot drinks. He doesn't really know how they work. But, you know, I was like, he wants to do this. Great. I'll let him do it. And he disappeared downstairs. And he came back up with his thing. And it was an interesting concoction. I was like, what's in it? And it it wasn't awful. It was just surprising because it had Garam Massala in it. Oh. Okay. Very weird mix of Of kind of um chai. Oh. Like I've got some instant chai, and he put some honey in it and loads of Garam Massala. It was it was a cumin-y bitch of a drink. It was very cumin heavy. But, you know, it did it did perk me up, mainly because it came from him. You know, it's one of those. It's like, you know what? For to for you to actually I think about me.

Sam

Wonderful.

Mark

It was really nice. So I'm going to have that as a win. What the flip? Right, what are the flip moments now? These are moments that our neurodivergent children will come out with something. They'll say something or do something that completely mystifies us and makes us discomfort.

SECTION INTRO

What the flip?

Mark

I had a really good one sent in from a listener, and I always like to hear from listeners. Jane messaged me to say I had a what the flip moment recently that made me think of Neuroshambles. I was under the weather, so very similar to my experience, right? I was under the weather, and my neurodivergent 13-year-old daughter wasn't being particularly compassionate. We've all been there. When I pointed out she doesn't have the right temperament to be a nurse, her response was, I could be a nurse. I'd just be terrible at being around ill people That's kind of a core prerequisite of the job there. Yes. Wrong career choice. She could. She could. Just don't be ill. Then we'll be good. Have you got any what the flip moments, Sam?

Sam

Yeah, Bill wasn't a big lover of um he didn't read books, he didn't wasn't into reading, but he was obsessed with Coronation Street. So we'd buy him the T V magazine so he could read what was going on in the soaps. And I passed him the paper with the T V magazine inside it and on the front it had the headlines of Simon Cowell pays two hundred and fifty thousand on cryogenics and all this stuff. And Bill just said to me, Mum, did you read this about Simon Cowles going to get frozen? And I went, yeah, yeah, I did. And he went. Who's going to do the X Factor on Saturday? And I went, Well, no, it's for after he dies And then I had to explain to him and he just thought he was going to get froze and just like which a lot of people would probably think that would be a good idea, but but yes, Bill had a wonderful take on things. So we've uh yes, we've giggled about many over the years.

Mark

I've had a few what the flip moments myself recently. India from nowhere just turned to me in the car and went, You sound like an overgrown beaver eating monkeys Okay. Thanks for the feedback. I'll do better. I don't know what I could do with that. I'll try not to to sound like that. I don't know. The other one was from India when I asked her to clean her teeth and she responded in the most fabulously PDA way. imaginable. Because I tried I tried the demand avoidant approach. I was like, Do you want to put your pajamas on or clean your teeth first? Right, give them a choice. It's their choice. She went That would be a very mistakable choice because you are not the boss of me.

Sam

Oh. Laying it down there now.

Mark

Sorry for daring to to have any level of authority in this household. How dare I?

Sam

Delightful. I just I adore it. I could have I could just have conversations with wonderful autistic people all day long. I could say it's just it's wonderful. Nice outlook on life.

Mark

Oh yeah, certainly. Once you're attuned to it, you know.

Sam

Yes.

Mark

Once you know what you're listening out for.

Sam

Yeah, when you're in the inside bit, did write in the inners of it all. Perfect.

Mark

Okay, that is it for this episode of Neuroshambles, the podcasthon Special. Firstly, Sam, thank you so much for coming on and being a guest and for everything that you've done with mASCot and the role that that's played in my life.

Sam

Thank you for having me. It's been an absolute pleasure.

Mark

You're welcome. You're welcome. I'll also say a massive thank you to all of you Neuroshamblers out there who are continuing to Download it and recommend it to people and leave lovely comments on the socials. If you want to give me a review on Spotify or Apple Podcasts or your podcast platform of choice. Please do. It's massively appreciated. And it does help to convince other people that what they're listening to isn't complete tosh. Not always. There are light elements of Tosh, but it's not Complete tosh, and that helps to get a review to recommend it to other people. You can also follow Neuroshambles on the socials on Instagram or Facebook or TikTok. So feel free to join me there. I think that's it for this episode. All that remains for me to say is have a nice life.