Camping | Jo Matthews

EPISODE TRANSCRIPT

Mark

Hello and welcome to Neuroshambles, the podcast that aims to shine a light into some of the murkier corners of what it's like to parent neurodivergent kids. I'm Mark Allen, and every episode I'm going to be swapping stories with my guests about some of the frankly ludicrous nonsense we have to deal with on a daily basis. So if you're anything like me and you're feeling frazzled, Overwhelmed and pretty much an outcast from polite society, join me. Hello, and welcome to episode one of Neuroshambles. First things first, thank you. Thanks for listening because obviously listening to episode one of any podcast is a bit of a shot in the dark, isn't it? And I'm hoping that your leap of faith is going to be well rewarded by the end of this podcast. I guess I should start by saying a little bit about myself. I'm Mark Allen. I'm a lapsed stand up comedian now very active parent of three wonderful hooligans. I've got two boys. Jay is ten and he is diagnosed autistic with ADHD. And I've also got Otto, who is eight, and he's also diagnosed with autism and ADHD, though he presents very differently to his brother. So that's already a bit of fun in our household. I've also got a six-year-old daughter, India, who is suspected neurotypical. I say suspected because I have learned by now not to count my chicken. I'm going to wait and see how this one plays out before I make any real judgments on this. Now, we all live in Brighton with my former partner, Tam, who is mother of all three kids, and an all-round excellent human being who I enthusiastically co parent with. Tam has also recently realized that they are neurodivergent with autism and ADHD flavors. So it is all going on in our house. Now, being a neurotypical myself, there is a giddy melting pot of differently wired brains at play there, and it leads to what I affectionately term the Neuroshambles in our household, which obviously gave me the name of this podcast. Now, in the world of podcasts, as I'm sure you already know, there are loads of ones out there that provide an in-depth look at neurodivergent kids and offer practical advice on how to parent them and all that guff. Many of them are brilliant and insightful and super helpful, but that is not what NeuroShambles is. If that is what you're looking for, it's not the place for you You. I'll level with you. I have no idea what I'm doing. I'm just making it up as I go along. Because there's no real rule book for raising a neurodivergent family, is there? Now, what you will get from this podcast. is a very honest discussion about the day-to-day challenges that I face. And I'm going to be talking to other guests to get an insight in what they're doing With as well, because obviously everyone's setup is very different. Autism presents very differently, and ADHD presents very differently, and you know, people kind of handle that in different ways, and that's what I'm kind of interested In getting to the bottom of a little bit more. But essentially, I'm hoping that this is a place for people to be able to share stories from the front line of parenting neurodivergent Kids, tales from the trenches, if you like, and I'm gonna try and keep it light-hearted and fun, and as fun as it gets, obviously, because sometimes there's gonna be serious stuff that comes with the territory of what we're talking about sometimes. But I'll try not to take it too seriously because that is very easy to do in our situation. And I think we could all do with a little bit of light and positivity Occasionally, and that's what I'm hoping this is going to be. So, yeah, that pretty much sums up me and the podcast. In a moment, I'm going to introduce our first gu But before I do that, I should probably add a trigger warning at this point to say that there will inevitably be swearing throughout the podcast and throughout the entire series Now, I can't imagine that's going to offend many parents and neurodivergent kids because I'm sure we've experienced a lot worse than a few F-bombs, but I think I should warn you anyway. To let you know. So now that's out of the way. Without further ado, I'd like to meet our first guest after this generic swoosh.

SECTION INTRO

Meet the guest.

Mark

So I am delighted to welcome. To the first episode of Neuroshambles, our first meet-the-guest contender, who is the wonderful Jo Matthews Um, hi, hi, Jo, how are you doing? Hello, yeah, I'm good, I am good. Welcome to the show. Um, I s I suppose a bit of context is: I know I know Jo from What about how just just local neurodivergent circles, I guess?

Jo

Yeah, it's a cool gang, a cool gang to be in.

Mark

It is, very much so. So we um so you know my kids uh very well now, uh since we crashed into your life about uh two years ago. Um, and obviously I know yours, so we'll be kind of Talking about that, but obviously, for the listeners who don't know your setup, can you just describe a little bit about the neurodiversity going on in your household?

Jo

So in our household, um, our eldest, George, is twenty, and George It seems weird to say we were very lucky in that he didn't speak. He couldn't speak until he was about three and a half or four. And that got us fast-tracked into the system. So he was diagnosed just after his third birthday And diagnosed with then more recently he's also been diagnosed with severe ADHD. which we sort of always knew, but it hadn't caused him any difficulties, so here we are. And then Dotty, my girl, is nearly seventeen. And she was first referred when she was four and was diagnosed eventually when she was ten. And Dottie is autistic with sensory processing disorder and quite a few sort of physical health issues that seem to go hand in hand. with autism in girls. It took six years to start of going backwards and forwards and

Mark

Because obviously girls didn't have autism back in those days, right?

Jo

No, oh no, no, they were just quirky, or copying their brother or quite a few hearing tests because I will maybe she's deaf. Um and yeah, it's such a strange experience having one of each and just seeing that Difference. And then resources as well, because George, being a boy, everything was external. So he kicked and bit and threw chairs and caused havoc everywhere he went, especially school, and therefore he had resources piled on him

Mark

Right.

Jo

Because he was causing problems for other people. Dotty was the kid crying in the corner and wasn't causing any trouble for anyone. So again, that uphill battle. to get resources and to get what she needed. Anyway, but here we are, happy, healthy kind of thriving. Surviving. I think you are.

Mark

You are. Yeah, definitely. Definitely. And in terms of sort of the rest of the household, because obviously we've got a neurodivergent uh you know, Tam is is aut With ADHD. I'm neurotypical, so it's a bit of a collision of neurotypical Well, now I'm very used to it now. I don't know anything else, do I? Let's face it. You were born that way. It's not your fault. Exactly. Just try and tolerate me if you can, Jo.

Jo

God, I'll do my best.

Mark

What about your household?

Jo

So neither of us have sought formal diagnoses. But again, that really interesting difference because as soon as George was diagnosed, we both said, Oh, wait a minute, Phil's autistic too and was just really obviously used to tiptoe walk. When he was anxious. Oh, really?

Mark

And that is like a classic sign, isn't it?

Jo

Yes.

Mark

But usually, in kids, does he do it as a grown-up?

Jo

Yeah, he said he stopp Now, weirdly, but when I first met him, I used to go, Why are you on your tiptoes all the time?

Mark

Were you making him anxious all the time, John?

Jo

Yeah, apparently so. And then also he was really odd. I just thought he was joking. But he I can't I can't think of this solitary example now, but So, yeah, Phil, as soon as George was diagnosed, we had that light bulb moment of, oh, wait a minute. And then I. It's interesting. Dotty from about the age of 12 has been saying to me, Mum, you do know you're autistic, don't you? And I've been at first was like, no, don't be daft, I'm sociable, I'm, you know, outgoing, I'm loud. And then the more I've learnt about women and girls, and the more I've thought about The amount of times I say the wrong thing and don't realise I've done it, I upset people, or I don't know when it's my turn to talk ever.

Mark

That's going to make a fun podcast then.

Jo

This is why I'm a bit worried. We need a code word which could just be shut up, Jo. I could just say that, can I?

Mark

No, I'm not going to do that.

Jo

Obviously. And yeah, so I've sort of gradually realised, hang on a minute. And then all of the things that I just thought were me being an arsehole, like I don't know. I I see rules as suggestions that I may or may not follow, dependent on how I'm feeling. don't care who anyone is. If I think they're wrong, I'll argue with them. All of those traits that I just thought were me being deeply flawed, Dotty says, Mum, you're autistic and you're a bit demand avoidant and Yeah, so it's we're interesting. We're an interesting household.

Mark

Yeah, I've stopped second guessing now. Like anyone, it's just like I just you know, people may be neurodivergent, they may not. I might as well just assume that that's just, you know Know, part of whoever they are, whatever they are. Because Tam, we just assume that Tam was neurotypical for years. Yes. And than sort of just scratching your wet and going, Oh, actually, this is this is slightly neurodivergent and then just the more we understood about autism the more we kind of recognize so many traits and they contextualize so much stuff. It doesn't change Tam and and it doesn't change kind of my relationship with Tam and my friendship with Tam. But it was quite an interesting kind of eye-opener, I think, a couple of years ago when we realised that.

Jo

Yeah.

Mark

And I I feel left out in my house, to be honest.

Jo

Well, I mean, could you just try to behave in a more autistic way? I think for me, and even though I don't really feel that I can lay claim to that identity, if that makes sense, but the more I sort of think, oh, yeah, I do have that trait. it's almost like I then am able to stop beating myself up about things and to think, well, actually, that happens because I can't help that and therefore, you know, I'm not lazy. I'm just and I'm not disor I'm not I'm chaotic in life. And I used to beat myself up, but now I think more like, well, actually, I'm probably not

Mark

That's I'll be honest, that's that was that is why I'm so I feel so comfortable in your presence, Jo. I don't I'm really you because you own You own your chaos. I guess that's a really strange way of putting it. But but you are just like, this is who we are. Like, I'm not going to change that. This is who we are. And, you know, accept us or you don't, but I'm not going to change it. And that's for someone early on in the sort of journey of autism and my kids that felt so weirdly empowering to to to have someone just sort of own it because I've been I'm as a neurotypical, I spend so much of my time trying to kind of tamp down the behavior of my kids in certain social situations and getting really anxious about it and wanting some behave in inverted commas normally. That to see you just kind of go, yeah, this is who we are. Stop is so like, it was just so empowering and it was so kind of inspiring. So I think that's definitely helped me on my journey.

Jo

I was. really lucky in that so when George was very first diagnosed, I think I went through something a lot of parents probably go through of thinking, Oh, this is awful, this is a disaster, this is I'm going to fix it. So I was online looking for how do I fix this? And I stumbled across a group called Aspies for Freedom. And I don't know if they still exist, but they were one of the very, very early Autistic acceptance groups who were saying, We're autistic. Actually, we quite like being autistic and no, we're not going to do behavioral therapies or social skills groups or and that absolutely changed my mindset into I'm going to raise a child and then children to celebrate who they are and not to try and squash it or change it or fit in. Why fit in when you can stand out?

Mark

What was that group called again? Aspies for Freedom. Where did you find it? Is that on Facebook?

Jo

I w I think I got to my Now great shame. I was googling autism cures and looking at, oh my God, all the Did you find one? No, have you met my kids?

Mark

So, if anyone is listening to this podcast hoping that we're going to tell you about a cure, stop listening now.

Jo

Wrong with this.

Mark

That's not what this is.

Jo

However, if you want something where you will celebrate your child and you will seek out that's the other thing, seek out other people Who celebrate them rather than tolerate them and seek that connection? Life will be wonderful Mostly.

SECTION INTRO

What's the topic of the week?

Mark

So our topic of the week, I wanted to do our first one, um, camping, um, because it's something that I do a lot. But but the whole format of Neuroshambles really It is to look at some things that neurotypical families kind of find relatively straightforward. And we have to approach it in a very different way because Of the fun and challenges that our children present us. And camping is a really good example for me in that my kids love camping. They absolutely because I and I don't know, are yours the same in terms of George and Dotty big camping fans? No, no. Okay, so you're going so obviously because camping for Mylot is almost liberating, I think, in that when you go camping you've you've got to lower the bar, like really, really low. So all of the things that would normally cause those little friction points in our day, like mealtime And sitting at the table for mealtimes. We don't do that when we're camping. We kind of eat up a tree or wherever they are, right? And there's. Yeah, like sleep as well. There's no bedtime routine really when you're camping. They just sort of wait until the sun goes down. They're very good at in that they sort of take themselves to bed when they feel like it, which is great. But camping it it just weirdly, the lack of routine is almost liberating for them. For kids who actually like routine

Jo

Do you think it's low demand? Because what you're describing is an environment in which all of the demands on them are reduced to almost zero. And they've got that autonomy to just be wild little Hellions for however long they're there.

Mark

No, yeah, it absolutely is. I think I think not oh yes, so there's definitely low demand On the kids, and that's definitely a thing. We also, we're away camping. That's what we're doing. That's the event. So there's no other stuff we're trying to squeeze into that. They've got no OT appointments, so we've got no after school clubs and no getting them to school. It's just like we're just here existing. So there's no agenda, which I think helps. There's also no screens. And I think that in a way, like I like my kids love screens. Oh, okay. But and it's a very important kind of part of how they regulate themselves. But if there are no screens there and no access to them, then they're not being denied anything that they want. Do you see what I mean? Because it's not an option.

Jo

See, that went wrong for us quite early on. Which is part of why camping has attained a legendary status in our house. So I love camping. It's one of my fav I love what you're describing, the freedom, the I love it, it sounds weird that everything takes a long time. So it makes you slow down.

Mark

Yes, yes, yes.

Jo

Making a coffee becomes a 20-minute chair, I'm sitting in my chair. I love it, and the kids absolutely hate it. And I I think I always call it mum goggles when you're looking at thinking about something and you've got this rose tinted view of what it would be like. I had thought all of the above. Oh my lord, the freedom, the nature, the they wanted Wi-Fi. And nothing but Wi Fi.

Mark

Well, even when they were really in when they were a lot a lot littler.

Jo

I mean, when they were a lot littler They wanted mine were on screens, each of them from about the age of five. And they wanted their whatever it was at that time, their DS or their Game Boy. which they could do, but as soon as the batteries started running low, all hell would break loose. And then, yeah, as they got a bit older, WiFi We made the mistake once. So I kept trying because mum goggles. I kept thinking, no, this time it'll work. This time we will go camping. We will have fun. Oh, dear God. We went to this beautiful place, idyllic nature, no WiFi. I hadn't researched properly. There was no WiFi, barely any signal. And one afternoon, me and Phil, the husband and Dotty, the daughter, sort of had a nap, had a little rest, and George was left to his own devices. And when we woke up He'd made a sock puppet, right? Which you'd think, oh, that's amazing. No screens, he's like doing something creative This sock puppet was called Pedo Sock.

Mark

How old was he at this point?

Jo

Like ten, eleven. I don't know what how or even if he knew what Pedo meant. He just knew it was something you're not meant to say. And that's the other thing we discovered that day for the first time. There's no walls in tents. There's no soundproofing So we're there with him shouting, Hello, I'm Pedo Sock and trying to attack us and we'd like It felt like inches away from really nice, normal, middle class families doing nice, normal things. And we're trying to silence a little maniac with a pedo sock puppet So, yeah, no, that wasn't great.

Mark

Yeah, that is that is definitely one of the challenges of camping is being right in amongst Neurotypical families who don't get your setup and they don't understand you know, you the your neurodivergences. And also you are separated by canvas, so they can hear everything. Yes. And where that really kind of gets us is the early mornings because Otto wakes up super early Like he'll wake up at like five, and if you know, he could be right next, you know, he's feet away from someone with just two bits of canvas separate.

Jo

So he gets up, and he's also got no volume control.

Mark

So it's like it's it's either on or off for Otto, and so he'll want to start playing. And so one of us either tell him or I have to get up and occupy him.

Jo

And he's sort of 5am.

Mark

And try and keep him quiet, but he wants to play. He doesn't like he doesn't do quiet reading. Jay will just, you know, kind of read to himself and just occupy himself. But Otto constantly needs interaction And no one needs interaction at five in the morning. And even fewer people want to hear people interacting at five in the morning, right next to their heads. So there are. There was one time we went to a wedding and again this is like um my we went to a wedding where it was glamping and it was really nice. They'd set up these really nice yurts. It was like You know, typically, that's a lovely idea.

Jo

Can I just say, Mark, that's the most middle-class thing I've ever heard.

Mark

Yeah, I mean, it wasn't my wedding, fabulous. It was like, let's slum it, but not actually. Yeah. But it was really nice because it meant that everyone could stay on site and then, you know, it worked really well until Otto woke up at five in the morning and we are l like in amongst loads of people. We've had a heavy night because, you know, it's a wedding, right? Um, and   really he's really loud, so I have to get him up and walk him around this massive field. I mean, I've barely slept. I'm a bit hungover, and I'm trying to sort of like trying to occupy him by pointing out like cows and wildlife and stuff, whilst passing people who haven't gone to bed yet. People are still hammered from the party and just thinking, what has my life become? What is it? I used to be one of you.

Jo

Yeah. And did you know at that point that he was autistic? How old was he?

Mark

Uh he was, I would think, probably three or four at that age. Uh maybe yeah, probably nearer to three. Uh and we didn't know because our experience w I think we didn't we knew that Jay was had a lot of energy and was very different, but we didn't really hadn't pinned that on autism autism at that Point, but also because Jay represents so differently to Otto, we were like, you know, even I mean, it took us a while to kind of understand that Otto was autistic as well, because it was like, well, that's what autism. Is because Jay is very overt and presents in you know that that quite typically autistic way in well, what is typically autistic? A ridiculous statement, but in a way that it was quite obvious that he was very kind of, you know, single-minded and he is socially just an absolute car crash. Whereas Otto. was very sociable. And so when he was having a bit of difficulty, instead of sort of acting out and being kind of abrasive and You know, rude, he would just be in tears and want to kind of hide away. And so it took us a while to understand that they were two different facets of the same thing. But then just to bring it back to the the topic, both of them are relaxed when they're camping. It's really uh but but I think Otto likes the sociability side of it 'cause there's loads of people around who have nothing else to do. So so they can talk to him and they can play with him And Jay is just a bit more free range. He can go to go and wander off into the woods, or he can sort of hang out in his tent. Because he's now in his own tent.

Jo

I've seen his tent, yes.

Mark

Which is a new development. And it has made a big difference. And this all sort of started as a result of a a less successful camping trip that we had where well, we we were all in one big ten And that was was fine. But I think as he gets older, he needs more and more to be able to have his own space for regulating. And that doesn't necessarily need to be uh like really far removed from everyone, but he just needs to have his what he perceives to be his own safe space, I guess. And um obviously in a shared tent there isn't any of that and Otto and India don't you know, they're in a tent, so there's not really any kind of there's there are no doors or anything, so they're just kind of uh, you know, hooning around the the tent and Jay's getting increased Furious about it. And then, yeah, there was one particular episode where he just went absolutely nuts and we realized that it wasn't really workable. And then the last draw was this year. We went to Elderflower Fields Festival, right?

Jo

Yeah.

Mark

Which you went to. See, he and I think for the first time we realize that Jay loves camping, but he hates people. Like large groups of people are really triggering for Him, so we went camping, uh, and we go camping, just you know, just us a lot, and it's absolutely fine, he's totally fine. But we went to a festival And he was he turned into an old man. He kept saying, When are we going to leave this wretched festival?

Jo

And the most galling thing would be the amount of money it costs to go there.

Mark

I know, I know. And to be honest, we did it for Otto Because Otto absolutely loves music and he loves that environment, and we have sort of been clinging on to this idea that we can do a A thing for all of us as a family, we could do this thing and it'd be really nice. We could do all this together and have this shared experience. But the more and more we sort of try and do that, the more we realize that actually we're going to need to divide and come Because not, you know, the way that Jay presents and the way that Otto presents is so different that finding a thing that's going to kind of keep everyone happy is very, very difficult And Jay got more and more infuriated, and he would try and go to bed early, and people would be At a festival. So they would be talking and drinking near their tent. And, you know, there'd be the sound of music in the background. And he was getting increasingly furious. And he'd be shouting through the tent: Shut up. And at one point. Tam had to stop him going out to tell off a goo a group of kids who were chatting about football. Like, he was like, I'm going to go out there and tell them. It's like, Jay, this is not. No, they said fine. It's not even nine o'clock. Dude. Um, and we realized basically that this wasn't sustainable. So so Tam agreed to take him home. Um, so then it was just me and Otto and India, there, and that was that was fine because they both wanted to be there, and I wanted to be there. But you know, it's sad for Tam because Tam enjoys festivals as well, so we you know, we kind of Tam drew the short straw there. And that was when we decided that we really needed to get a blow-up tent Because taking down a tent that's got poles on my own is qui or putting up a tent with poles is an impossibility. Whereas actually Next year, I can go with Otto and India, who aren't going to help put the tent up, let's face it. And I can do that with the blow-up tent without any problems. So that's that's My top tip if you're camping with autistics, if you go with five of you, don't always plan to come back with all five.

Jo

This, yes. I think you have to have a flexible approach. To be honest, I'm quite envious that you ever had any help setting up or taking down the tank because that's.

Mark

Tam has been very helpful. Yeah, is Phil not that guy?

Jo

No! Phil, I mean, bless him. Whatever it is he does for work, he's really, really good at. He moves numbers around, and so he's An absolute genius with numbers when it comes to anything, and I mean anything practical, he's hopeless. So, right from the get-go I was, oh, let's go camping, it's going to be wonderful. I'd get there and the three of them would just sit watching me set everything up on my own whilst moaning. So, yeah, no, I never had any help whatsoever.

Mark

That is a particularly galling part of camping wi camping with neurodivergent kids is the the lack of help you get and the sort of excess of criticism

Jo

Oh my god.

Mark

Because they can't wait, right? I don't know if yours are anything like mine, but they're so impatient. They want to get their stuff out. It's like, dude, I'm doing all the work. I know. So if you want to help. But they can't get that.

Jo

And then when it's time to go home, what they would do is they would so we'd wake up and I'd say, right, we'll pack up and we'll go home today. Hey, that's it. We've had enough. I'm done. So then they would immediately go and sit in the car. This is the kids, not Phil. I'm sure Phil would have if he felt he could. They would sit in the car. And about once every two minutes, one of them would go, Can we leave now? Not really. I'm taking down this massive tent and packing up all your crap. And what and yeah.

Mark

Packing up takes so much longer as well, doesn't it?

Jo

Oh, my God. And it's that it's I mean, you have to let go of so much as a parent of neurodivergent kids. But yeah, that was galling.

Mark

That like are they beeping the horns? Have they done that yet?

Jo

They would if they could have. But yeah, that used to be the trigger point for me when I would finally just lose my temper about what a disaster it had all been, is that just having to do all the work and just getting a stream of abuse for it.

Mark

Well, I had that 'cause this so so when so we decided recently that Jay needed his own tent and Tam and I had a tent that we used went to go hiking with years ago. So it's it's and it's amazing, like two person tent. So for Jay, it's absolutely perfect. And he was like, I'm going to pitch it on my own because, again, Jay knows best. Jay believes that he's the expert at anything and everything. So he decided that he was going to pitch it on his own. So I was like, Okay, I'll let you. I also know that that's not the easiest of tents Put up, but I gave him some space to do that, and he was like criticizing the wind, cursing the gods. It was my fault somehow. I mean he was like at one point he said, You are you are more ignorant than a truckload of mince beef.

Jo

I mean to be fair Mark, he's right. You are.

Mark

He didn't have to say it.

Jo

Oh, he's excellent.

Mark

So so then I I um so then I had to sort of help him without sort of by pretending I wasn't helping him, do you know what I mean? So I had to let him feel like I'm not really helping him that much. It was it's a very delic delicate balance so that he feels like he's done it on his own whilst also not really doing it. But now he's in his own tent and he's it's it's a massive change. He's been able to just kind of go in there and read and then come out when he wants to. That makes a big difference. So he's a lot happier there Um, I also remember uh which which we uh helping George with a with a tent. So we went when we went camping with you guys and George was next to us and he was obviously really struggling. So he takes after Phil there, right? So he was really struggling with this tense. So I was like, Do you want a hand? And he was like, Yeah, yeah, please. And so I started sort of looking at the polls and trying to work out how it worked. He just fucked off. He left me to it. So I did it all on my own.

Jo

Yeah, you'll do that.

Mark

And then he just sort of rocked up afterwards and moved in, and that was it.

Jo

He probably didn't even say thank you. Probably not.

Mark

It's fine. But again, I'm very useful

Jo

Is that from Phil? And I feel bad because I feel like I'm bad-mouthing Phil, who is just the best person in the world. But both Phil and George get through life by this amazing ability to charm other people into doing things for them

Mark

I think Jay has that.

Jo

Yeah, Jay definitely has that quality. But yeah, George is I don't know how he gets away with it, but he will just get other people to do it and not even appreciate it.

Mark

So we're sort of talking about how how difficult camping is, which does make me question why we do it. I think from my perspective, the kids get a lot out of it. Yes. And there's there's a place that we go every year. So, you know, uh we've we've learned to not camp in very populous places as a family now. That's that's that's one thing we've taken from that. Uh so if we can find somewhere that's quite relatively Quiet and secluded, then everyone's happy there. I don't know if you have this, but I had a major issue this year With PDA and working out where to pitch a tent.

Jo

Oh, no.

Mark

Right. Because so, if people are listening, I need to, there will be acronyms used in this that you may or may not be familiar with as. Parents of neurodivergent kids. PDA is one that's going to come up a lot, which is pathological demand avoidance, which is very prevalent in a lot of autistic. I think, which basically, you know, I think both of my kids have it, and it represents itself in Of the opposite way, really, uh, in that Jay has to exercise control over everything, so he will just literally refuse to do anything he doesn't want to do unless he can see a reason for it. He will just say no, and he will be so stubborn that there's no point in continuing. So that's kind of his demand avoidance. Otto has PDA as well, but that manifests itself in. He he panics. So, if a demand is placed on him, he can't process it quick enough. He knows that there's a response needed, and he'll just massively panic. And so, he'll say no, without really thinking about what's been offered. I could say to him, Do you want Some chocolates, and if he's not ready for that question, he'll say no, and then a couple of seconds later, go, actually, yeah, I do want chocolate, I always want chocolate. Um, so that's how it kind of manifests itself in him. So so Jay's is to control things so that he's kind of comfortable. And Otto's is to just so that this the the stress of having to make a decision just goes away. We also realized recently that Tam has PDA. So there's a lot going on in my household. And this was perfectly typifying when we went camping this year. And we got there and it was this massive field and there were loads of places to camp. It's like, right, well, where are we going to camp? Well, this seems like a good place. Okay. So Jay's got his own tent. Tam's got the tent that we're having, and we're pitching. So then Jay was like, I'm going to pitch in the shade over here And Tam was like, No, I'm not pitching in the shade. I want to be in the sunshine, so I'm going to pitch over here. And I said, Well, Jay, you can't pitch over there because you're miles away from us. To be near us, like I'm fine with you having your own tent, but you have to be near us. And he was like, I'm pitching in the shade. And I was like, right, okay, well, Tam, can we move our tent nearer to To Jay, then it was just like, no, I put you, I'm in the middle going, can we just make a fucking decision, please? And then, and I'm just getting more and more frustrated because I can't balance these two things, it's not possible And then we get a phone call from the people we're camping with who'd pitched around the corner and they're both went, No, but they both ent, Oh, fine, we'll just pitch with them So it's like tip typifies P D A because I'm not placing a demand on them. The other people aren't placing a demand. They're just saying, well, this is where we're pitched. They both then go, well, it's not a demand, and it seems like we can do that. So, for God's sake, the shit I have to deal with on a daily basis.

Jo

It's exhausted before you even start.

Mark

Exactly. Yeah. Well, it was perfectly encapsul ated it. But that was a fun camping trip Oh.

Jo

Um the other thing is there's always loads of other children around. Which for my two was something of a mixed blessing. Dotty occasionally could make a friend and play with someone successfully For a few hours, George could because George is a hedonist, so he was quite good at just getting in with the naughty. If there was like any naughty kids on site, he could get in with them and Cause havoc. And it's that sort of you're being forced to interact with other families all the time.

Mark

Yes, yes, because you've got all this time on your hands as well

Jo

So there was one of our favourite family stories. We were up at Stonywish and um it was all going quite well. And there was this nice Woman with a kind of maybe three-year-old. And I must admit, so he was clambering about on this climbing frame thing. And I must admit, I was thinking.

Mark

So, how old is George at this point?

Jo

This was Dot. Dot was about six.

Mark

Okay.

Jo

And we were sort of waiting to have a go, and he was clambering, and the mum was really hovering. So I was feeling a bit judgmental and thinking, oh, God, helicopter parent. And then I realised, oh, this child only had one arm. The problem being, Dotty also realised, and Dotty went, I've just noticed he's only got one arm. to the parent.

Mark

Say what you see. Yeah.

Jo

Oh, and the mum, to be fair, was absolutely lovely about it and was yes, he has he has. He was born this way, so he's having to learn to do different. And I was si I was just thinking, oh This is lovely. What an amazing interaction. How wonderful. And then the mum said to the kid, Come on, Henry, climb up. And Dotty said. Bit tricky with your one arm and then And I couldn't I couldn't keep it together because it was just the funniest thing I'd ever heard. A bit tricky with your one arm And but then you have to spend another two days being in close proximity with these people who must hate you, must hate you. She's just because the mum didn't laugh. She did not find that funny.

Mark

No, no, I can imagine. Which is why. Like, because I think, yes, camping with neurotypicals Is is uh in a group it you you do face those challenges and it makes it uh much more difficult, but um We this is why when you go camping with a group of neurodiversions, it's a f fucking joy.

Jo

It is wonderful.

Mark

Isn't it like so so just just for for the listeners, so Jo organizes a a a camping Trip once a year for sort of autistic families to basically go into the middle of nowhere and just let it all out And it is unbelievable. It's just it's so lovely that no one's judgmental.

Jo

No one cares.

Mark

No one cares. So the the the nonsense that goes on because we all take joy in each other's Kids, as well. It's like we 'cause we get where it's coming from, and there's a there's a shared sort of sense of humor and a shared camaraderie, I think, of the challenges that we face that is really liberating. Uh, so I always really look forward to it every year.

Jo

Yeah, and my kids also look forward to it as well. Even Jay, even after what we shall call the incident. Do you remember the incident? So George would have been this was like three, four years ago, George would have been sixteen. How old would Jay have been that very first campaign?

Mark

He'd have been six, six, or seven now.

Jo

Yeah, and he, there's no easy way to say this, but the report was he kicked George in the bollocks Twice.

Mark

Just to contextualise it a little bit, it wasn't out of the blue.

Jo

Oh, yeah, yeah, no, George. Deserved it, undoubtedly.

Mark

No, no, I'm not saying that. I'm not trying to apportion blame. I'm saying that there was a game going on. I think that George, and I don't know how complicit George was in this game, it may well have been. He was just, he was just launched upon by children. But the game was that they were trying to wrestle George over or something like that. And then Jay was just like, I know the way to do it because obviously in his brain, yes, yes, there is a way to do it, but that is not the way that you should do it with your friends.

Jo

So he decided to kick him twice in the neck. So after the first kick, George issued a stern don't do that again. To which, of course, Jay thought, I will.

Mark

Well, that was a demand, right?

Jo

Don't do that again. Well, actually, fuck you, I am doing that again. But George picked him up and threw him across the field.

Mark

Yeah, yeah, he launched him like a ragdoll across the field. Which obviously, you know, from my part, no judgment. I'm not going to wade in and go, What are you doing? He's like, He fully deserved it. And to be honest, it did it did sort of It dampened him down a little bit, I think, in quite a good way. It's like, oh, there are consequences to my actions every occasion.

Jo

Yes. It was at that moment that I knew that I loved you and Tam. Is when I had I went to shame-faced, going, Look, you know, I need to just let you know. my my massive kid. And you just both went, he probably deserved it. So yes, camp with other neurodivergent families. Yeah.

Mark

Well, there was one time where I'm woken in the middle of the night. It's like perfectly silent. And then all of a sudden in the middle of the night, I just hear from a neighboring tent the words, You're a fucking idiot, you're a fucking fucking idiot. And there's some poor parent just trying to Quietened down, this child who's having some kind of meltdown in the middle of the night, and I'm just like, you know, at that point, you just kind of roll your eyes and sort of try and roll over and fall back to sleep. And then the next morning, he was so apologetic. Like, you don't need you're not, you're not in a place where you need to apologize. Yeah, seriously, we all, yeah, exactly. Right, okay. I think that's camping.

Jo

I think we've done camping. Unless there's anything else. I mean, I don't know if people were expecting that practical advice. Just muddle through. No, this is yeah, exactly.

Mark

I am not I'm not promising any advice with this podcast at all. I'm just promising stories, swapping stories of stuff we've had to deal with just so that we because I think it's so easy in this setup to feel isolated When you feel because you're surrounded by neurotypical families, and you look at Facebook and Instagram, and people posting the perfect pictures to their kids. You know, to feel slightly removed from that. So I wanted to sort of create something that people could sort of get together, gather together, and go, Yeah, there's actually quite a lot of us going through this year.

Jo

And it is actually quite funny. It is sort of when your first child is diagnosed there's that tendency to think that you've been casting a tragedy and you haven't. You've been casting a comedy and you will laugh so often at such ridiculous situations. Yes. And it's wonderful. I wouldn't swap it.

Mark

Yes. Yeah. Yeah. Yeah. And all the best comedies have some Kind of pathos in there, some elements of you know sadness. So, um, yeah, and I think that's that's where we're, you know, Tam and I are starting to, well, we are, we've been there for a while now of seeing the light in our situation. And just embracing that fuck it, this is us mentality. And I think that really helps.

SECTION INTRO

It's not all rubbish.

Mark

Okay, so the next part of the show, this is something that a section that I call it's not all rubbish, because it's so easy to go to focus on the challenges that we face and some of the things that we find difficult that I think it's also important to shine a light on some of the more light-hearted side of things and some of the sort of the positive side of things things. Um so one of the things in the in it's not all rubbish section is going to be uh neurodiversity champions where I want to kind of discuss usually companies uh the uh or kind of organizations that make things easy. That provides a service that just takes a little bit of the burden away from being neurodivergent or people who get it right. So, the neurodiversity champion that I want to talk about this week is actually someone that you're very closely involved in. It has been an absolute kind of godsend for Tam and I when we were kind of navigating this journey. And that is a group called Mascot, who are unbelievable. Just tell us about your kind of involvement with Mascot.

Jo

First, Jo? So, I have the enormous privilege of being one of the directors of Mascot, and we kind of grew from a group of parents sat around a coffee Table talking about their newly diagnosed children and wondering what the fuck you're meant to do next. And we're now I think we've got one thousand six hundred members. We've got a really active Facebook forum where parents can just be honest and get support and advice. I run the programme for under 14, so we try and get the kids together. We try and give them opportunities to meet each other and just be themselves and not have that pressure. But yeah, I mean, I I'm biased. I think we're fantastic and we I mean, yeah.

Mark

I endorse that. Wholeheartedly. It's amazing. It is such because again, it's just allowing This space for people to be themselves. Because again, like I was explaining earlier, as a neurotypical and as someone who is just like insanely kind of aware of how other people perceive us. I mean, you know, I've got my my grounding is in stand up comedy, so that is like I'm nothing if not acutely aware of everyone's reactions. So, when my kids get involved and I'm in public, and people, you know, you kind of see this wave of disapproval going on around my kids' behavior, to go into a place where there is none of that is so liberating and it's so lovely to to kind of have that. And that's I think where mascot uh really, really helped us out in that um So mass got to kind of go into that environment. So with the Sunday Club was the first time where we went and there's kids of a similar age and they're all neurodivergent and crucially there's no judgment. So that just kind of there's this w what I kind of call the joyful disregard for convention. No there are no rules. So like I I mean you were saying Once that someone sort of made their kid come up and say thank you, and your reaction was so lovely.

Jo

Yeah, is that all You don't need to do that. I mean, you can if you want to, I won't mind, but I know they're grateful because they had a great time. And it's that just trying to get out of that neurotypical thinking about how we must behave. Because must we must kids do that?

Mark

Does that matter? Yeah. So you're giving the kids permission to be themselves, but also you're giving the parents permission to let Because there's always that feeling that you've got to sort of somehow rein them in. And I don't have that when we kind of have the meetups, and that's absolutely lovely. It's almost like unmasking as a parent, in a sense, as well. I mean, I'm a neurotypical, then I'm sort of unmasking and going, you know what? I don't have to pretend that my family is anything other than what we are. Uh, and that's really lovely. So I I I would you know, well, firstly, thank you for everything you've done for Mass And if anyone else wants to kind of learn more about mascot, there's a Facebook group which is amazing and find out a little bit more about it. And there's probably other kinds of Autistic or neurodivergency support groups locally to you that may do a similar thing.

Jo

And if there isn't, start one. It's much easier than you would imagine. She said, exhausted on my knees with absolute exhaustion. It's really easy. It's great.

Mark

But it is hugely appreciated in very, very We're very grateful for it. So, that is our neurodiversity champion for the first episode. If anyone else, if anyone listening, has got any neurodiversity champions that you want to kind of recommend as well. This is normally companies that Kind of do it and go actually, you know, for example, the Science Museum had an autism-friendly session and they do it every now and again. And my kids went, and it was unbelievable uh because they open like two hours before the general public go in and you know you've obviously got to kind of prove that you're a autistic or you've got autistic Kids, you can't just rock up at 10. And the lights are up, so and the noises are sort of reduced, so it's not So sensory, they even do stuff like turn the hand dryers off because the hand dryers are like weirdly triggering for my kids and for other autistic kids. So, to for my kids to be able to go in there. and to be able to have the run of the Science Museum when there's not so many people and when they don't have to queue up for stuff because queuing, as we've discussed, is a Major trigger points. We're not great at that. So, I mean, like, yeah, just a big shout out for the Science Museum. But if anyone else has any kind of recommendations of of neurodivergency champions please email the show at hello at Neuroshambles. com um and I will uh I'll give it a shout out because I think it's good to spread the word of other To other people.

SECTION INTRO

Tiny wins.

Mark

The next section of the, it's not all rubbish bit, is the tiny wins. So this is where I want to focus on things that neurotypical families would it would not be a big deal for a neurotypical family but in our setup something that is would be considered small for them is a massive win For us, and I want to kind of champion those and sort of own it and go, Yeah, we're proud of that. Uh, so have you got any tiny wins for us, Jo?

Jo

I've got a huge win this last week or last two weeks. So George, the boy, is 20 and last year he went off to uni. He's studying I don't know, digital media or something, film production. Um, so the huge win is not only has he somehow scraped through the first year and progressed to the second year He's just moved into a house share with six friends. Wow. I know.

Mark

Wow. That's amazing.

Jo

I know. It's and it's Do you know what's beautiful? Is they are all neurodivergent. They didn't meet.

Mark

Oh, really?

Jo

Yeah. They didn't meet through a club or a formal. They just found each other. Um and yeah, I I am so, so delighted for him and proud of him and and I someti I sort of think, um Normal in Inverted Commerce families wouldn't feel this joy, wouldn't they'd just be like, Oh, yeah, he's in a house yet.

Mark

Which is the thing they do, right? Yeah, exactly. Just a tick on the list of things that they're expected to do. And I mean, like, from my perspective, like, Jay wants to go to university, but I don't he's not great with other people. So and I see similarities between Jay and George. So like the idea that that they can find their tribe and their own little sort of group of people, that fills me with a lot of optimism as well that that it is It is possible.

Jo

It's yeah. And I'm just so happy for him and that he's done it not by being in any way pretending to be who he isn't. He's done it by being unapologetically himself.

Mark

Brilliant. That's fantastic. That's a major win. Yeah. Yeah. So yeah, we're very happy this week. Yeah. Let's celebrate that one with

SECTION INTRO

What the flip.

Mark

Alright, the other thing that I wanted to bring to this as well is the what the flip section. Now, this section. It's almost entirely, I'll be honest, inspired by Jay and some of the some of the things that he says, because he says very funny, but really quite disarming things sometimes. So so what the flip is when he comes out with stuff and you It really throws you just like a curveball. I don't know how to deal with what you've just said. So, what I'm going to do is just write it down and tell people, and they will also see that it's a bit so. So you know, so I had one earlier, which is the he c said that I'm more ignorant than a truckload of mince beef. That was one. So this this So the last two weeks, in no particular order, I had this one. When I'm older and I have a moustache and a budget. I'm going to Sorry, the start of my character is those two indicators of adults. Exactly. Which is The best start to any any sentence.

Jo

Yeah. I'm all in. I am all in for the best of this sentence.

Mark

When I'm older and I have a moustache and a budget, I'm going to parachute onto Mount Olympus. I'm like, yeah. You do you, Jay. Yeah, I'm fully supportive of it. So that was particularly fun. He also said, and I still don't know how this was intended. You can trust an oyster with a jet pack as much as you can trust me. You could trust an oyster with a jetpack as much as you could trust me.

Jo

How does his brain connect those things? How does it go from oyster to jetpack?

Mark

Does that mean he is trustworthy or he's not trustworthy? That's the question.

Jo

I mean, would you, in all seriousness, Mark, if you saw an oyster with a jetpack, would you trust it? That's what you've got to ask yourself.

Mark

Probably not. So maybe that's the point he was making. Um okay, another one from the archives, from the last two weeks If you actually think about it, canals cause more problems than they solve.

Jo

What?

Mark

What problems has he ever been caused by a canal? I don't know. I don't know, but But if you follow that logic, what what do they solve?

Jo

Transportation of goods in the yeah, but not now. I mean, they cease to be relevant.

Mark

So actually, he' He's pretty impressive in what he's saying.

Jo

I don't know. I think you're reaching a bit there.

Mark

I'm sure you're.

Jo

He's a genius. He's a genius. He's a genius.

Mark

And the final what the flip moment is when he very earnestly looked at me and went, If you ever make me a Christmas jumper, I want it to be of a mongoose eating a sausage. And I went, why? And he just went, why not? And walked off.

Jo

Indeed.

Mark

That was it. It just left me with that.

Jo

Indeed, why not?

Mark

Why not?

Jo

You've got to change your thinking.

Mark

There has never been a question of me making a Christmas jumper for Jay, but it's never been on the cards.

Jo

But just in case I am thinking of it, yeah. Now you know, I think he's done you a favour there.

Mark

So if any of the listeners out there has a a pattern of a Christmas jumper that is a mongoose eating a sausage, let me know.

Jo

I'm not even sure what a mongoose is. What is a mongoose?

Mark

It's a a mammal. It's a bit ottery, I guess, but but not in in kind of wet environments in

Jo

More desert environments, it's a dry, a dry otter, it's a dry otter, yeah, yeah.

Mark

And nor would they really come into contact with sausages so I've got a number of issues.

Jo

Yeah, I mean, there's a lot. There's a lot to unpack there, but let's just throw that whole case away.

Mark

The final thing I wanted to do in this section, because as I say, we we spend a lot of time looking at the challenges that we have with our kids and focusing on some of the Difficulties, I wanted to take a moment for you to tell me the best things about your kids.

Jo

Oh, got where to begin. George is a hedonist. He just grabs life with both hands and wrings every last bit of joy out of it. And if you let him, he takes you with him. Um he he goes to he regularly goes to punk gigs at an Anarchist Vegan club where he's just got this big circle of anarchist friends and it's the perfect environment. So that I just love that hedonism and that joy. And Dotty I was thinking about this the other day. So Dotty's nearly seventeen and she wants to spend time with us And I look at my friends and my family who've got similar age girls and their kids don't want anything to do with them. They're off with their mates and their vapes and their whatever it is youngsters do. And I love that. I love that we get to keep them a bit longer and that we get to have that really close, really excellent relationship. Because of her being autistic, not in spite of it.

Mark

So, yeah, I would not swap. Great. Yeah, I think Otto is  Similar in that he never wants to leave home.

Jo

Yeah. And why would they?

Mark

He's going to live with for the rest of life, whereas Jay, I think, will be out of home. Oh, he'll be with George

Jo

He'll move into George's house share and be down the Cowley Club at Punk Giggs doing God knows what.

Mark

I could totally imagine That as long as he doesn't kick Georgie the nuts, I think it'll be all right.

Jo

Yeah, hopefully, he's learned his lesson on that one

Mark

Right, so that's it for our inaugural episode of Neuroshambles. All that remains for me to say is firstly thank you. So much, Jo, for being our very first guest and for everything. And thank you to the audience for listening. This is where I do the bit about the socials because we've got a Facebook And Instagram and Reddit. We're also on threads, not Twitter, because why would you endorse that nonsense And we've got loads of other episodes planned. So, we've got episodes on birthday parties, on holidays, on special interests, leaving the house, sleep. So, if there are any topics that you want me to discuss with some of our guests. please email us at hello at neuroshambles. com and suggest anything and I'll see if I can fit it into the schedule. Finally, if you like what you hear, please like the podcast on your podcast platform subscribe to it so that you know when a new one drops. And also tell people who you think might enjoy it and might kind of get something out of it. And give us a review if you if you feel that way inclined as well. And if it's a nice one Obviously, don't say it's rubbish. I'm not letting Jay have access to this at all. All of those things are going to help us spread the word and hopefully get more people into our neuro-shambolic tent, which would be Be lovely. Now, I always find it really difficult to sign these things off. I think it's important to sign off a podcast with a sort of a regular Thing and I was, I can't just say bye, see you next time. Well, I was thinking about this, and this sort of perfectly dovetails. with this episode because this is something that happened when we went camping, right? And there was one time where we were camping and Otto was playing with like another kid In the tent next door to us. And we were playing the whole weekend and they were getting on pretty well. And then when it came time to pack away We packed away and we sort of went over to the family that they'd been playing with the whole weekend and they went, All right, bye, see you later. And Otto just turned around and he went, Have a nice life. And I was like, why did you say have a nice life? And you went, well, I'm not going to see them later, am I? I mean, I've only just met them and I'm not going to see them later. So that's not true. So if I say have a nice life. then that's the right thing to say. Absolutely. Actually, you're completely correct. So I think inspired by Otto, this is good That's going to be my sign off for this podcast. Excellent. So all that remains for me to say now is thank you very much, Jo. Thank you to the audience. Listening and have a nice life.