Friendships | ”Kate”

EPISODE TRANSCRIPT

Mark

Hello, welcome to episode five of Neuroshambles. Thanks for coming back, Neuroshamblers. It is a pleasure to have you here. We've got another packed episode where I'm going to be meeting a new guest. where we'll be discussing the thorny issue of friendships and how our neurodifferent children navigate friendships in their Lives. We're also gonna have a lovely It's Not All Rubbish section where we'll have a new neurodiversity champion. We'll have some tiny wins and we'll be rounding off with a whole bunch of what the flip Moments. It seems like they've been coming thick and fast in recent weeks. So I've got lots to share on that front as well. So, without further ado, let's crack on. Meet the guest. Okay, so this is the Meet the Guests section where we obviously are introduced to a new guest to the show. And this week, our guest is Kate Welcome to the show, Kate. How are you doing?

Kate

I am very, very well. Thank you very much. Thanks for having me. I'm delighted to meet you.

Mark

Thank you for going into a small cupboard on my behalf. Pleasure. I don't do that at all. I don't insist on guests doing that, but Kate has kindly sat in a cupboard to aid the noise recording side of things. So firstly, I guess I'd like to know a little bit more about your setup Up? What are you dealing with there in terms of neurodivergencies in your household?

Kate

Yep. So, well, firstly, to say that I myself am on the age. ADHD pathway, the never-ending pathway, I think, via the NHS. Not in any particular rush, but I also suspect autism too, but we'll do one thing at a time because, you know, because that's how I work. But My daughter, my darling daughter, who for this podcast will be called chosen by herself Ivy, she has just been diagnosed. with autism spectrum disorder or condition two days ago. Oh, wow. So is this just in? This just in. You heard it here first.

Mark

Wowzers, how are you how are you all responding to that?

Kate

Um, we're very happy. She was very, very happy about it.

Mark

I love it. Own it.

Kate

Big cheer when she said, you know, we think you meet the markers for autism and she just started jumping up and down. In fact, she Actually, it was like bouncing off the walls. And then, sort of rather hilariously, they said, and we do think you should Should explore an ADHD referral as well.

Mark

No shit, Doctor.

Kate

And yeah, that was quite annoying actually, because I'd asked for an ASC and an ADHD. referral to be done at the same time and they in their wisdom thought that there wasn't enough evidence apparently for ADHD.

Mark

They do it separately. Yeah, it's annoying 'cause I we had that with Jay as well where we I mean it was uh his ADHD was probably more evident Than his autism at that stage. So, but you have to basically do the autism one and then take that off and then go right to the back of the queue for the ADHD one as well, which is. You know, a fun time, but it's interesting that Ivy was sort of celebrating that as well. Why is that?

Kate

Well, in her words in the room, they said, Why are you happy about that? And she said, Just because everything makes sense.

Mark

Oh, bless her. That's amazing. Yeah, yeah. So so I guess there's been sort of a a long journey of feeling a little bit sort of um

Kate

like a a a square peg maybe or just just a bit out out of um extraordinary let's put it that way yeah very extraordinary lots of out of the box thinking not not thinking like everybody else and yeah, she's just really happy about it as she's been telling everybody.

SECTION INTRO

What's the topic of the week?

Mark

Okay, so the topic of the week this week is one that I was quite keen to talk about because I think it affects a lot of neurodiverging Kids, and that is the subject of friendship and how they make friends, how they keep friends, whether they even want any, I guess. And I think we've probably got very different experiences with With our kids. So, do you want to talk to me a little bit about Ivy and her relationship with friends?

Kate

Yeah, I think the standout thing For Ivy, is that where friendship's concerned, she has always dominated play. So she's very much leader. Everything's Hunky Dory as long as she's in charge and everybody is happy to accept the roles that she casts them in in her games. And that all works very well. So she she sort of has a group group of friends, or actually ju she just plays with various different members of her class at the moment. And usually there's a show or a performance she's planning.

Mark

Right. And so very structured, very controlled.

Kate

Structured. Yeah. And and she sort of, you know puts them all in their their roles. In fact, that's just reminding me that she said the other day that there's a a boy in another class who wanted to play in their game and he's got a diagnosis and he's quite sort of energetic, shall we say. And some of the children might call him annoying. And she said, oh, no. Wants to play in our game. So she said, I just thought, right, well, we're playing kind of cops and robbers. So you're in prison, unfortunately. And And there you'll stay for the entire game. And that's how she dealt with that.

Mark

And so she imprisoned the child at lunchtime.

Kate

Poor boy. Just spent the whole game in the prison saying, Let me out. But no, no, you're not getting out yet. So that's how she dealt with that one. But she's actually much better now at listening to sort of other children's ideas and trying to implement them

Mark

So early on then, if things were not as she'd kind of wanted them to be, if if a child, heaven forfend, would have an opinion on what should happen, how was that responded to?

Kate

I think well, I mean, I don't know I don't know whether she played that much with other children, certainly when she was very, very Tiny. I know sort of toddlers just sort of pass each other and don't really interact anyway. But when she was very young, she preferred to play with me over any children. So she absolutely loved role play. That was just her favourite thing to do. And that sort of came about because we would have um all the all of our toys laid out and she'd have the whole collection of the Winnie the Pooh toys and the whole collection of um Toy Story toys. That wasn't her wanting the collection or anything. We just kind of got them. And I used to do the voices of all the characters And she was Ivy, and she was involved in like their world, and they would come to life, and then we'd play a game together So, I'd have to do all these different voices. Don't ask me to do any voices now, but I will say I was very good at them at the time. And she just thought they were alive. She absolutely thought they were alive And she loved that more than anything else. For a long time, more than playing with any friends, she just wanted to get back home and do role play. That was her thing. And she would say to My other half, you know, are you go daddy, are you going out? Are you going out today? And he'd sort of say, Oh, well I can do and she just wanted him to go out so that we could just play.

Mark

Oh, really? It's interesting because it's something that I think Otto has. He has a really kind of Odd understanding of reality and what reality is. And it's something I've not really been able to put my finger on it. But if we're watching a film, he will very often turn to me and say, Is this real life?

Kate

Yes.

Mark

And I have to explain to him that they're actors. But I have to do it quite regularly. Okay, well, no, he's an actor. So he is he's a real life person It's a bit like it's a bit of a headfuck if you're very literal. He's a real life person playing a character that has been written by someone else. And also, like, if you've got someone who's playing different characters in the same thing, like, just absolute mindfield.

Kate

That's really interesting because Ivy. Does do a bit of acting, performing herself. But she's the same. And so even though I say to her, it's acting like what you've done. And she's done green screen acting and you know, lots of voiceover stuff, she still can't get her head around it, and she absolutely won't watch anything scary or anything that might, you know, might give her nightmares or anything like that.

Mark

And that's a big thing for Otto as well.

Kate

Yeah.

Mark

Like watching scary stuff. You're the first person that I've met that has actually had that, like, that their child has a similar sort of confusion about real and unreal when they're

Kate

Watching something often does have dreams about what she's watching. All of her friends are watching Wednesday at the moment, and some of them are watching Stranger Things and stuff like that.

Mark

But she just absolutely could not watch anything. Like that, no way because it's real, right? It's real in her world, yeah. Yeah, because yeah, Otto has nightmares about seeing stuff on YouTu

Kate

And like, he will, and like, just stupid stuff.

Mark

It's not even scary stuff, but something will just lodge in his head, and then he won't be able to sleep, and he'll be just worrying about, like, you know, like, Jay watches a lot of kind of Of YouTube video game walkthroughs, and sometimes there'll be something that's a bit sinister, not like scary, but just you know, some sinister music or something, and that'll just lodge in Otto's head, and he won't be able to kind of shake that.

Kate

Will affect his sleep, and yeah, yeah.

Mark

So, Ivy kind of preferred to play in uh in in in kind of make believe way.

Kate

Make believe and with me, yeah. Um and so and then obviously she went to school and then it probably was around about there, so maybe not until Was sort of four or five where she would start playing with other children. But again, you know, we had lots of reports where they would say They used to send little reports back home and they'd say, Oh, you know, Ivy was playing today and she was had this idea amazing idea, and then everybody wanted to join in the idea and great imaginative play, Ivy. And we got lots of reports back about that sent home. But as I said, it was always seemed to be her leading the play. Yes.

Mark

Yeah.

Kate

And I don't think she would Necessarily fall out with somebody if they weren't going to join in her game, but she just that she just sort of cut them off, and then that was it. They'd be in prison for the next game.

Mark

I mean, I 'cause I I re call you know, 'cause when you're when you're when they're really little, you try and encourage them to play, right?

Kate

Yeah.

Mark

And you get other kids and you try and get them to play. And there was always something that I noticed with Jay is that he wasn't Particularly interested in other kids and playing with them. And I think, I guess, part of that is them not picking up on social kids Right, because it's a very sort of non-verbal interaction that you know you seek out other people and you there's give and take, and there's Sort of you pick up nonverbal cues and you run with it and you give your own nonverbal cues and it's a much more of a collaborative thing. Whereas Jay wouldn't do that. So I remember once watching him playing with a kid. And he'd accidentally hurt this kid, and this kid is just crying on the floor. And Jay's just stood there waiting for him to stop crying so they can start playing again And there was no, no, which made him look like an absolute nutcase. So I was like watching it going, he looks like he's just decked this kid. and he's waiting for him to get up to have another go. And obviously I'd seen it happen, so I knew that wasn't what was happening, but I was it w it it looked very strange because he wasn't picking up on this nonverbal communication.

Kate

Yeah.

Mark

Um so I noticed it quite early with with Jay and Tam had always sort of from very early on been aware of how he was around other kids. I was slightly oblivious to it. It took me a little while longer to kind of to to see it, but then once you see it, you see it. So again, just kind of looking at the early years really of the because I think I had the same report back from both Otto and Jay's teachers. Was that they don't have any sort of particular friends, but they float around and they join in and they just join in. And it was always kind of pitched as like a really positive thing And there were no concerns from them, even though sort of Tam was was, you know, initially was asking because there was concern there. And they said, No, no nothing to worry about. I now know having India in reception that's a very different experience because India is suspected neurotypical And it just had friends and would seek people out that she got on with, and would and now she's got a really tight knit group of of friends. And I I've been through two kids not seeing that, so not knowing what was in inverted commas normal or what what was kind of achievable for a child in terms of interpersonal relationships. So seeing India do that now is like, oh, this is a very different From experience.

Kate

Yeah, I think there's one of those things that, again, and we were asked on the assessment. Does she have What's she like with friends? Does she have a a friend, one main friend, best friend? And actually, yeah, Ivy's or had a best friend since uh Deception, and they're still best friends. They've called each other best friends now. But what's really interesting to see is that they are very, very different. They're like chalk and cheese, they don't have the same interests They're quite different as as little people. And so I I could I sort of couldn't really understand why you know they've they've stuck as best friends, but they've really got each other's backs and Um uh Ivy's quite a justice warrior and her friends know that about her and uh they'll go to her with their problems and um and they'll expect her to stand up for them as well if um you know Know something that's gone amiss, and she does. She doesn't mind that at all, she quite likes it.

Mark

It's quite interesting that Ivy's best friend is someone who's very different. From Ivy, because I kind of always think that people tend to make friends with people who are similar to them. You go, ah, I like that thing as well. Or I, you know, there's a similar dynamic between them typically. So I know that that's that is true. People with in India has basically found her doppelganger in terms of character and personality, and it's absolutely lovely, and they seek each other out. I was always kind of wondering if that. If that's why Jay and Otto, certainly in the early years, didn't have that many friends, is because there aren't many people like them. It's not like they can latch onto that and go, Oh, you're a bit like me, so let's group together. And actually I was talking to Jay about this recently, and he said that the only person in the world that gets him is this boy. And he said this boy's name and he said, This kid that he met on holiday who was like a couple of years ago who he's like met once and he was this ni like obviously neurodivergent kid like i they were they were like peas in a pod and i like and they it was absolutely lovely to see. And they would just talk at each other and they would interrupt each other and they put their hand in each other's faces and they and they didn't care. And they were just like the just the same energy and they'd run around and like they'd do sword fighting with Sticks and hit each other and hurt each other by accident, but not really give a shit. And it was, it was amazing to see. And he's just latched onto that and gone, he's the only person that gets me. Because he's the only person I think that I've ever seen that is is on on on a similar kind of level to Jay.

Kate

Well, what I would say um with Ivy is that actually when if out of school, so if we're on holiday or if she's got an activity or a or or you know, kind of a club or a summer school or something that she goes to, she does always Head straight for the other neurodiverse kids, the neurodivergent kids.

Mark

Okay.

Kate

Yeah, always. And they're always on top of each other, like, and it's just like an instant hit. But what happens is there'll always be some kind of incident or something, well, not always, but usually. And then it suddenly ends. That's what I find. So they're kind of like really good friends. And mum, could she come over and Can she come for a play date? And can we do this together? And can we meet up and can we chat on a Zoom and this and that? And then it just sort of all ends And then that's it, over. Whereas the the friends she's got at school that are different from her, that are not necessarily neurodivergent, um, has been longer lasting That's what I would say.

Mark

But maybe that's because of the situation.

Kate

I don't know that they're in.

Mark

They see I mean, d are they are they aware of uh of Ivy's neurodiver

Kate

Oh, yeah, she's told out for a while.

Mark

But before then, obviously, because you know, it's been evident for a while, I'm sure. Have you kind of discussed it with the parents or

Kate

This just to sort of yeah, with within her little group of friends, we've all got a, you know, the usual sort of mum's WhatsApp chat, and um, I've kind of just Certainly mentioned things or or said, Oh, I will I'll be sitting in the car park whilst everybody's outside, you know, everybody's inside because I've got to wait in case Ivy Is overwhelmed and needs to go home early. So they certainly know about her anxiety, and in the classroom, she is a bit in and out of the classroom. When she finds it overwhelming. So I'm sure the kids have fed that back as well. So, yeah, I don't think it's a surprise to anybody, you know.

Mark

So, sort of moving on from the early years. Then we sort of get into, I guess, junior school where friendships become a bit more kind of fixed and a bit more important. I think the social aspect is a bit more important rather than you sort of play as as groups. And that's where I've noticed that Jay is becoming more and more isolated, I guess, in that Um and and and he's that is his choice as well. He said he said to me, I barely have any friends and I don't want any. And he and it is quite heartbreaking to watch him as he sort of drifts around the playground on his own. I say one of the things I need to do is also sort of check myself and realize that I'm actually projecting onto him. I'm projecting something onto him that I would want. I would want friends. I would want to be positive.

Kate

Social norms.

Mark

And Yeah, exactly. And and I'm projecting that onto Jay when he doesn't seek that. If anything, that would cause him more anxiety and more dysregulation. So he's very good at self regulation. And um, he's found at lunch times, 'cause that was a big thing for him as well. At lunch times he didn't want to go in the playground. I I I kind of in hindsight now, it's the sensory overload. So he just is given special dispens To just go in the library and read. So he's absolutely fine with that. But I remember once, and the first sort of inkling that something was very different was when he told me he was in the playground and he was like, The boys. To what started making fun of me. And I always just try to meditate. And I was like, I mean, firstly, he Don't know anything about meditation. It's like, right, okay. So it wasn't like he'd practice meditation. But he said, yeah, I was trying to meditate. I was like, well, where were you trying to? meditate, Jay and he went, Oh, in the um in the sunniest part of the playground And I was like, And where is the sunny part of the playground, Jay? Honey, when it's in the middle of where the boys are playing football. Cross-legged. This is literally, literally going, um. So then, so then he they start taking the piss out of it because It's an odd thing to do, right? It's like be oblivious to everyone else. And he's thinking, um, so they start taking the piss out of him and going, um. So he then gets annoyed at them and decides to walk off. And then they start sort of following him and doing it. And and I sort of reflect back on my school days and I know that there was always at least one kid in the playground that was just The little weirdo, you know, that would just be what on his own, right? And he'd just be talking to himself or meditating or whatever it was at the time in the 80s. And I just sort of the realization that that's Jay.

Kate

Yeah, yeah.

Mark

And also the real the also the realization that that kid at our school was More than more likely than not neurodivergent.

Kate

Yeah, but we didn't know, did we? It wasn't a thing.

Mark

No, exactly. Now, Otto is a very different kettle of fish, as I kind of explained in the last episode um about special interests he's suddenly got into football right in a slightly almost too intense way but He's not but I think socially it's comforting to him. He sees that there's lots of kids play football at London. Time and it gives him this little kind of social crutch to lean on because he can just go and play football with them and he doesn't have to interact with them really in any meaningful sense because they're playing football, they're playing a game, and the rules are defined and he knows what's expected. And that that has actually been incredibly good for him, I think, in terms of having This group of people that you can hang out with.

Kate

Yeah.

Mark

He's conversationally, he finds things really difficult. So he needs these little crutches. to to kinda hang stuff off. So like at breakfast time, he'll just fire questions at people. And it is quite you know, I haven't Even had a coffee yet, and he's just like asking me, Daddy, what's your least favorite animal? I don't know, Otto. I haven't thought about this, and he'll just be firing questions at everyone else around the table. I realize now that it's because it's a conversational thing that he can start, that he doesn't have to have an opinion on anything.

Kate

really.

Mark

And it it's it's almost just like a scaffolding that he can have those conversations. And I think he's a bit like that at school as well. He does a lot of riddles. Yeah.

Kate

Ivy loves riddles.

Mark

Oh, really? It's a thing, isn't it?

Kate

Oh, loves them. I tell you, she really loves as an extension of that things like there's uh treasure trails and escape rooms and yes, yeah, uh uh anything like that that gets her brain thinking sort of outside of the box Yeah, we're big fan of escape rooms.

Mark

So in terms of sort of Ivy's relationships then, um uh the the anxiety that she kind of feels is is does she kind of pick on up on the sort of the politics of Of of friendships, or is she largely sort of oblivious to that?

Kate

No, yeah, she does pick up on the politics in in general. And also she quite likes a debate.

Mark

Okay.

Kate

So so I'd not say that she necessarily starts drama, I don't think she's like that, but she she quite likes going okay, so now we're having a debate And then, kind of going into that. I mean, actually, one of her very favourite things to do at the moment, I don't know whether Jay's there yet, but roast battles.

Mark

Oh my god, Jay would absolutely murder me. He would have re he roasts me every day. I think um both of my two Boys are very they just they are just oblivious to the the politics of it. They're they they they don't pick up on it and they're not involved in it Which is actually quite nice in a way because they're like, you know, you get the WhatsApp groups, and there's someone recently on one of the parents' WhatsApp groups waded in and went, What have your children? Has been awful to my child, and I'll be reporting to the teacher. And then it's like someone else is like, Look, if it's my child, can you just fucking tell me instead of being all cryptic about it? And it was all just sort of going on. And someone's going, No, don't name and shame. And I was like, that does not involve Jay. I'm going to mute for eight hours and walk away It was actually quite nice 'cause I know that J just Jay's just not going to be involved in that kind of thing. It's not his vibe. So that was quite nice. And also they don't they don't sort of uh for example, there's a lot of parties, you know, birthday party Parties now are not whole class parties. They are more specifically, this is my group of friends. They're more selective. And again, neither of the boys are aware, I think, of other people getting invited to parties or going, Are you invited to that person's party? And I invited them and they didn't invite me. They're not they're just oblivious to that. So, they don't feel left out or slighted by any of that, which is again quite a bit of a bonus.

Kate

Yeah, I think. We weirdly, the parties seem to have sort of died out. Um I I was just thinking, oh no, Iva gets invited to parties and I thought actually she hasn't been invited to one for ages. Maybe she doesn't get invited to parties anymore.

Mark

Since since the roast battle, accidentally. She started dissing everyone's mum.

Kate

Yeah, well, this is it. Um out of control. So I I don't know, maybe she doesn't. But um yeah, she certainly would meet up with friends in holidays and, you know, we try to kind Of get groups of them together and things like that, so um, yeah, I think I think she's still getting invited to parties.

Mark

So, you do have play dates and Stuff and she goes on play dates.

Kate

Yeah, so what's interesting about play dates with Ivy is that she's always desperate to have them, or she was for certainly the last couple of years. But it sh she at parties, at any parties and play dates, we've got about forty five minutes to an hour of intense playing, and then she's done So a party or a play date like sort of unofficially lasts a couple of hours. And so we sort of have this dilemma where she'll invite someone over and then after forty five minutes, she goes, um, Are they leaving? Sort of quite, and you're like, well, in like an hour and 20 minutes. So, and then she says, Okay, well, I was going to go and get my iPad And go upstairs, and then you're like, with your friend, and she's like, no.

Mark

Oh, no. So, do you have to do the entertaining then?

Kate

So, then, yeah, then you know, you've got We've got to find something to do with a ten year old on their own who you don't know very much about. Um no, we sort of have to me make her. So then she sort of begrudgingly plays for another half an hour this person who's in a house.

Mark

That she was like we had that with Jay that Jay once had like one of so uh a lot of Jay and Otto's friendships are ones that Tam and I have cultivated over the years. They're like NCT friends. Like his oldest friend is an NCT friend that we just he for whatever reason they get on really well. And it's really lovely. And then there's another friend that we've known for ages, and she came over for a play date. And it was just, I was cooking food for them, and Jay just kind of walked in. And just started taking his clothes off. Wow. It's like and she was in the garden. Exactly. I went, Chay, what are you doing? And he went, I'm going to go and have a bath. Your frie, your friends here. And he went, Well, that's no excuse for ignoring her personal hygiene.

Kate

Oh, I love that.

Mark

And then he, so I was like, No, you can't, you can have a bath later. Um, but your friend is here, so shall we just uh do that? Um and and Otto is uh he's better at play day But again, he's very intense and it's very high energy, and he can't like contain his excitement. And he wants to get everything out and show him everything. And like his best friend is is an only child who is not used to the the intensity of our house. Our household is pretty full on. And I sometimes see it's like shell shock To some of these kids, and where they're just the noise and the constant sort of back and forth between the boys in particular. But I think now he actually quite likes it. He kind of wants to come around to the madhouse because like he could he can stand on the chairs and stuff and I'm not going to get mad.

Kate

There you go.

Mark

Um so that's that was quite nice. And the other, I mean, back in the early days when you're sort of trying to work out who their friends are, they would go for play dates, and you'd have people over for play dates. Dates. And there were a few times that Jay would go for a play date, and he would never hear back from them again. They would never kind of offer to come around to ours. And he's like, I don't know what happened in there. I don't think I want to know what happened in there, but I do know that we're not welcome back.

Kate

Yeah, yeah, that makes sense.

Mark

One of the things about play dates, because they don't really get invited to play dates very often now, and they we don't they don't and I said say to Jay, do you want to have a play date? I mean, Otto will have He will want to play Dave. But Jay won't. I say, Do you want to invite someone else? Like, no, why would I want to do that? So I said, Okay, but I sort of miss that because for me, it's almost like test driving and neurotypical Like, you know, I get some it happened once that I remember sort of going, Oh, your dad's coming soon. So, can you get your shoes on? And she fucking did it.

Kate

Put her shoes on. 20 minutes later, you're like.

Mark

I couldn't believe it. She just sort of just went, she did it. She didn't argue. She didn't, like, there was no questioning it. She just went and did it. And I was just like, what? What else can I get her to do? It was incredible. And I kind of missed those days where I actually get to have a little test drive of it. Neurotypical every now and again. They're going to secondary school now. Jay and Ivy are going to secondary school Next year, and there's, I'm sure there is some level of kind of awareness of that, and that there's going to be a split Of friendship groups, and that's always, I think, in for a lot of people, that's quite a difficult thing to navigate. Um, and I again, it's something that my two boys have both been Completely immune to. So sometimes in school, in primary school, they mix the ears up, don't they?

Kate

They're just like, ah, fuck it, let's just mix them up and see what happens. Like, oh, thanks, guys. Which I can't. I hate that. Yeah, they only did it. once at um Ivy School, which was uh in year three they t have a extra intake, so they have two classes up to year two. And then in year three, they take four classes. So it's quite a big score. And then they mix them all up at that point. And I'm really glad they didn't do it again because I just think, oh, that's just. we wouldn't have needed that. That would not have gone down well with her at all.

Mark

So how aware is Ivy of the sort of the the friendship groups going up to secondary school? Because obviously that's another potential jumble of friendships, isn't it?

Kate

Yeah. The majority of her friends, in fact, all of her friends, will go to the school that's at the end of our road. I think it's really important for her. And I think it's probably going to be the one the school that we choose because of that re Because of her current friendships?

Mark

Um, I mean, for for Jay, friendships are not a driver of where he wants to go, basically, at all. Like, at at the moment, and it's I'm getting a lot of parents going, Oh, where are you going to go? It's like, uh, like, I can't I cannot choose a school for Jay based on how good the art class is or what extracurricular activities. I basically have to choose a place that's not going to completely crush him when gets there um it which is you know just the sad reality of of how he you know he's he's kind of coping with school at the moment um and and and if his he doesn't he's not really attached to people. So the fact that the majority, like the vast majority of of people at his school are going to go to one of two different um Secondary schools make no difference to him at all. He doesn't care about that, which, in a way, is quite nice because there's no anxiety around that. If he's not with like that friend or this friend, and also when they mix classes up, you know, his closest friend was put in a different class. And he was just like, well, I'll see him in the playground. He's not dead, is he? So he wasn't adversely. So, in a way, it's kind of, you know, that's It's quite good that he's sort of resilient in that in that way, I guess. Um, and similarly, one of his closest friends moved away. This is the this is the friend that that he took a bath uh when they're having a play day. But one of his closest friends moved away and left the school and loads of the kids We were just in absolute floods of tears. She was really popular and she was a lovely kid. And, you know, I felt quite sad about it. But she's just dead to Jay now. That's it. Like, and that's not him being cold. It's just like, well, he can't change it, I guess. And and I th maybe he just assumes that he will see her again, and he will. I'm sure he will. And when they see each other again, they'll be Know, really close friends, but and they'll and they'll get on, and you know, he might not have a bath in the middle of their play date, but uh, but it's not, it didn't affect him like emotionally, it. Affect him because he didn't have that kind of attachment. Um, whereas Otto again is very different, he forms very intense bonds with people, and that's a worry. I think. Like, so he's he's very, he's got a really, really close friend and they do everything together. And I can imagine that that's quite um That's quite a lot for for his friend to take on, you know, and if they end up going to the same secondary school together. Um, 'cause 'cause Tam had the Tam I was talking to Tam about this 'cause Tam is a secondary school teacher. And they had a kid in their school who was Neurodivergent, and he had a really intense friendship. They sat him next to his friend for every lesson. And eventually, the friend was just like, Oh, what a Make new friends. I don't want to. Do you know what I mean? And like, and it's true, it's not fair on him to be sort of sort of like hamstrung with this one very needy friend. And then that became a big, you know, a big emotion. Emotional upheaval for both of them, I guess. And I worry a little bit that that might be Otto's MO when he When he moves up, Jay and Otto will never realize this, but they are each other's best friend. Like they get on so well while Jay's in the mood. Obviously, when he's done, he's done. But the amount of joy they get from each other Other and that sort of interaction that they have with each other when everything is neither of them are dysregulated is absolutely joyous. And it's so like when if we go out with a group of people, they will find each other and they will just go and play together. And they are so comfortable around each other. And that is really what friendship is. But neither of them will ever realize it. And I think, in a way, that's a little bit sad that they won't. But in a way, if I ever pointed it out, it would ruin

Kate

Yeah, I mean I think you're probably quite lucky that they, you know, they can find that common ground 'cause I think like so many people that I know that Neurodivergent kids, they're just like oh, they are like that as well. Believe me, they are like that.

Mark

They are constantly at war, but um, there are just these moments where they just really connect and And in a way that in a way that they don't with others. And I guess maybe it is because they're both neurodivergent. That that might be it. Like you're saying that Ivy sort of seeks out Neurodem like a drug-sniffing dog, you know. Like, I know where the neurodivergency is, and you go and find it and seek it out. Um, and like Jay goes to this uh to the in-betweeners Club, right? Which is something that is run by Joe, who was in our first episode, basically for neurodivergent kids after school. To basically just, there's no rules, it's a lawless place, but they. Jay actually loves it and and all of the kids just, you know, 'cause Joe Joe is so good at creating an environment where people can Just let loose and not feel judged, and that's a really good place for him to go. And again, you know, that's not for everyone, so maybe that's it. That's good. You know, the thing that Joe was saying in the first ever episode was about George, who's her neurodevote Son, who's now gone to uni, and he's found his own group of friends, and they're all neurodivergent.

Kate

Yeah.

Mark

And they just gathered together like Voltron. They found each other and formed this collective. So one of the negative things I've found of having neurodivergent children who don't find it easy to make Friends, is this lack of play dates and this lack of kind of support when you need it? Because I don't have many people that will happily just take Jay for an afternoon. Yeah, um, or or we'll take all of them, like so. Me and Tam could never have that time to just spend with each other, and I'm sure that adv Affected our relationship in the long term. As a result of it, that's not obviously the only reason that we separated, but I'm sure it's sort Had a part to play in it because it's not like someone could go, oh, we'll take you all of your kids for the weekend because there's three of them, two of them are neurodivergent and pretty full-on. So there's already quite a big ask. So, um And that's kind of that's a bit of a shame. So India's got lots of people that I can call on. So I got called for jury duty recently And I was well excited about it. Yes, I have been called upon to dispense justice. I am born for this. I was well excited about it. And then I had to look at the logistics of what I'd have to do, right? Because I'd have to arrange for people to get the boys into school and to get India into school and also to pick them up after school and have them at theirs before I was done dispensing justice. And I got loads of people that I could call on for India. Like like there there were lo I could have given her to a different set of people every single morning and after school every single day Without any worries. But I couldn't call on anyone for the boys. And I had to basically defer it. I had to basically say, I can't do Georgie Duty because there wasn't that support. And I think that's a real downside. And that's the reality of. Of you know, dealing with was certainly my brand of neurodivergent children. I think you probably Have that less say with Ivy.

Kate

Yeah, I mean, first of all, there's only one of her, and I think so.

Mark

Yeah, true. There is only one Ivy. I feel absolutely sure of that.

Kate

Um, I'm very lucky because we've got um I've got my sister, Auntie Rach, and she has her aunt on my partner's side and they live nearby. And what we do is we take it in turns for them to come and babysit. If we're out and about. We don't do it as we don't go out and about as much as we would like to because of Ivy's anxiet It's right, okay. She can manage it for the odd night here or there, but it's certainly not, you know, it might be one A month or something like that, which sounds like it is probably a dream for you, but um, and um, we're quite lucky, but we just don't do it as often as we'd like to because we don't want to leave her, you know.

Mark

Yeah, yeah, I'm sure I'm not the only parent of neurodivergent kids who has this kind of experience in terms of people not being Able to, or not being willing to take the strain a little bit, I guess. And I guess one of the other things that I think is a little bit sort of I feel like, you know, parents in my situation and Tam's situation take a bit of the brunt there because we also miss out on friendship ourselves because because we're sort of I feel a little bit removed from certainly in Jay's case less so in Otto's case Um, but I feel slightly sort of isolated from those parental conversations about, oh, like, you know, oh, you you can take them to the football or um, you know, we'll we'll spend a weekend away camping with you guys or you know, we don't have we we're sort of isolated from those parental friendships as well, 'cause they, you know, hang out together and go for drinks together and we don't really have that. So we're Of again, just kind of feeds into the sense of social isolation that I think lots of parents of neurodivergent kids feel to a greater or lesser deg Agree. One thing I wanted to do as well was to look at the future of friendships. This is what I'm quite interested in: what kind of friends will our kids be in the future? Because, you know, obviously, you know, we've all got friends as adults, and they are very multifaceted individuals. And I was just wondering what sort of friend you think Ivy's gonna be in the future?

Kate

Um, well, uh f friend herself. Ah, I think she I think she will um She's very honest, very honest person. She cannot cope with anybody lying. That doesn't make any sense Her. So she so I think she will be somebody who's you know sort of quite quite honest, you would go to her for an honest opinion, if that makes sense. Sense and yes, like I said, you know, before she's she's very much a leader, so um, so I wonder if she'll have friends who are you know, still kind of are quite happy for her to make the decisions and then they'll just go along with it. Or I actually asked her, I said, what I said to her, what Sort of friends do you think you'll have in the future? And she's just said, theatre people.

Mark

Just that generic type of theatre person.

Kate

Yeah, so whatever that means, that's what she says to herself as having fear.

Mark

I was sort of projecting into the future. I think Otto. will be like super loyal. I think he'll be a very loyal friend. He will always be there and he'll always be available, but he will also be very ne You know, those kind of friends who need support all the time and need affirmation all the time. Because the way that I sort of describe Otto To people, it it's like he needs a sherper through life. He needs someone to go a little bit ahead of him just to clear the path. So he knows it's safe and that can show him when he gets into trouble. Maybe carry some of the heavy baggage to help him sort of navigate it. And I think he'll find friends that don't mind doing that. that then kind of appreciate his his love of life and his you know his energy he's a he's funny as well. So I think yeah, Peter yeah, exactly. He'll fi he'll find people like that. But so my hope for him really is that he meets people who who kind of who work alongside him in that way that it pro possibly neurodivergent people yeah um in fact here him and ivy would get would get On very well because Otto is very dramatic, and also he's a follower, not a leader. Yes, so I think they would get on very well. Jay, on the other hand, I think. Is his own person. So I think Jay will make friendships. And I think when Jay is on form and when he's on board with the situation, he is. Just a magnetic person. He's funny, and he will bring people with him by the sheer force of his personality. But once that night's over, you will not hear from him again for like two years. And he will be fine with that. And he'll be like, like, because I think we've all got these kind of friends with, like, you have these really amazing times with them, and then just nothing for ages. And then you'll meet again, and it'll be like, no time has passed. You're still like really close friends, and it's really lovely. But again, you don't really hear from them. And I get the feeling that Jay's going to be the kind of person that phones you up at four in the morning and says you've got two hours to get to Heathrow.

Kate

I bought some tickets to Cuba in your name. Brilliant.

Mark

And you're like, well, I'm coming with you.

Kate

That's it.

Mark

I've got no choice. And he's, I think. That's him. That's him.

Kate

He sounds like um have you heard of object permanence?

Mark

No. Well, I mean the the concept like Jean Piaget's ob yeah.

Kate

Yes, so I think um 'cause I I think I have Object permanence.

Mark

I thought you were talking about a band then, by the way.

Kate

When you first said that, I was like, No, no, no. So, no, it's that sort of thing, that kind of Inability to remember people if they're not right in front of you. Like they don't exist. And I can actually identify with that. I do that myself, and sometimes I just I did it the other day. I was driving. Um I have a got a friend who I go on walks with every now and again, and I was driving past the end of her estate where she lives, and I actually said to myself, Oh, Sarah, she exists In the car. That's what I said to myself. And then I just thought, oh God, I haven't got in touch with her for ages. I should get in touch and have got home. And like. picked up where we left off, you know, like six months ago or something. That's really interesting.

Mark

I've never thought about that as as a being a trait of Jay, and you're absolutely right. That's the whole thing about his friend like leaving school and he's like, that's totally fine. I'm like, he's not They don't exist because she's dead to him, right?

Kate

Out of sight, out of mind.

Mark

Yeah, yeah, that makes perfect sense. He's very in the moment and in the in the present, and Don't really think outside of those boundaries, I guess. That's really interesting. You've helped me see my child in a different light, which makes me worry about when I go away for a week. I'm dead.

Kate

Yeah.

Mark

I did. I did. Actually, it did happen once I came back one weekend and I was like, Did you miss me? And he went, Well, I missed your pizza. Mummy's was dismal. And Tam was standing right next to him. It's like, oh Thanks.

SECTION INTRO

It's not all rubbish.

Mark

So, this is the It's Not All Rubbish section of the podcast, where firstly, I'm going to ask you if you have any neurodiversity champions for Me, anyone that you want to champion who has done some sterling work in the world of sort of supporting and understanding neurodivergency?

Kate

Oh, yes, I do. I would like to mention a company. Called APPEER, which is APPEER. They're a Surrey-based non-profit organisation, and they're run to benefit autistic girls and women and Those around them, and they have lived experience-led practitioners, if you like, and they They provide an online and in person sessions and programmes, which, in their words, support a positive peer approach So, um Ivy's been involved with them for a little while, um, taking part in their online gaming sessions and in person gaming sessions. Um, yeah, so they do Roblox sessions and Minecraft sessions and they all just get together and Play really online, and then they also take them sometimes to a place called Overworld. I think it is in Woking, and it's a gaming space and VR space. And they're just a lovely, friendly company. And it means when we obviously go out and about and they meet up with each other, these girls, that the parents can obviously meet up Up with each other as well, and so many interesting conversations get started that way. Um, so yeah, I would highly recommend checking them out, they are up here

Mark

Ah, that's lovely. Thanks for that. As with any of these neurodivergency champions, I put them in the show notes for the podcast. So if you're listening to this and you want to check them out, I'll put the address for them in the web address for them in the Podcast, and you can check it out yourselves. Awesome. Thanks for that. Also, if anyone listening has any neurodiversity champions that they want us to mention, please feel free to email me at hello at neuroshambles. com and I will try and Give you a shout out if I can. That'd be great.

SECTION INTRO

Tiny wins.

Mark

The next bit is the tiny wins section, which I do need to rename because these aren't tiny wins. These are, I think, I'm going to rename it tiny, epic, tiny, epic wins because they are tiny in the neurotypical world, but to us, it They are fucking epic. And I think, yeah, I'm going to probably rename that section. But do you have any tiny epic wins?

Kate

Well, I mean, you know, obviously this week, massive win because we got Ivy's diagnosis. So.

Mark

Yeah, awesome.

Kate

Yeah. That's, you know, probably one of the biggest days of our life, actually. The other one that's just sort of happened over the last few weeks is that Ivy's a tow walker. She walks on her toes. Okay. And she's done that since she was about two. And that, of course, now means that because her calves and tendons Have not been used in the way that they should have been. She can't actually put her heels down now without, you know, having to lean. So she can't stand up straight with her heels down. So we've been on various physio appointments and trying to stretch them out and everything, but it's it's not really going to happen. But actually what happened in the last couple of weeks is that we went to see somebody else via the physio and they've custom made her some boots. That have like a wedged soul and then a wedge inside, like an insole So it means that her heel has got some connection to the floor and not all of her weight is on the ball of her foot. And so by all accounts, it now looks like she is walking flat and she's not walking on Her toes, which is brilliant because, especially going into secondary school, you know, that is just going to be a red flag for People to say, why are you walking on your toes?

Speaker 3

Yeah, of course.

Kate

And also, one of her friends, one of the boys, said, Oh, your boots are cool, they look like Jordan's And so she was delighted with that.

Mark

Nice. Because they're quite big boots.

Kate

They're quite clumpy boots. They don't look like. you know, kind of if you look closer, they don't look like shoes that most kids are wearing. But at the same time, she now looks like she is walking flat, not walking on her toes all the time

Mark

Yeah, that's wicked. So, so where did you hear about those?

Kate

Well, it was via the physio. So, she's been doing physiotherapy for a long time. And then they kind of referred us. onto somebody else within that chain or within the NHS. So these boots, I mean, they're worth a couple of hundred pounds a pair, but it's through the NHS. we don't have to pay, which is great.

Mark

Well, so are Jordan's, yes, exactly.

Kate

So, um, so that was a small win for us because, um, yeah, now she's walking

Mark

Looking like she's putting her heels down and hopefully that Wicked, uh yeah, that is an amazing win.

SECTION INTRO

What the flip

Mark

The next section is I want to um the what the flip section, this is where we uh highlight things that our children have said to us that make us go what the flip? Just completely bizarre things that That gets thrown our way, and we just have to do a bit of a double take and then go, Okay, this is what it is. Um, so uh I've got a few. Have you got any for us this week, Kate? Oh, yeah, quite a lot.

Kate

Yes. My um mum Bless her, has been keeping notes actually since Ivy was able to talk, and she um she writes down all like, you know, funny things she said, whether Ivy knew they were funny or not, which she does most of the time. She sort of knows she's quite funny. And so I said to her, Right, I'm going to go back in the archives and have a little look, so I picked out a couple from when she was about us.

Mark

Oh, brilliant.

Kate

Six seemed to be a good year for quotes. So she said, Mum, I think when you die, it's best just to put you in a coffin and rest umbrellas against you in the hallway. So that was good.

Mark

Did you drill down any further into that or did you just go, yeah, probably is best and just you just leave just walk off, don't you? Made a note.

Kate

And then, as you know, she's always uh one for performances. So I remember also around that time she said, Mum, do you want to watch um mine and Auntie Rachie's play It's an interpretive dance in the reggaeton style of Romeo and Juliet.

Mark

At six.

Kate

Yeah, at six.

Mark

Already, already challenging conventions at six.

Kate

And it was a very interesting performance, I must say. Ansy Rach was exceptional. It was the performance of her life. Yeah, and then finally, just a little sweet one, she said, um, at that at that age as well, she said, Daddy, you smell of fresh parchment and radiators

Mark

I love that. That is like the new Calvin Klein set. Fresh parchment and radiators. I love it We've had quite a few this week in particular, and I think the more dysregulated Jay gets, the more he comes out with them So one one this week was Otto is more uncoordinated than a one legged badger. Good. That was one. Personally, I'd rather work in the mines than do social activities.

Kate

Wow. That's bold.

Mark

I mean, he is he is nothing if not self aware. My other one this week. There's been loads of what the flip moments this week. And this one was: I wish I was a mouse, but with all my human knowledge, because I wouldn't have to go to school so I could use all my time learning to cure a disease A bew a bird or a mouse or some kind of animal, but I'd need to be able to speak so I can communicate my findings.

Kate

Yeah, a lot of thought going Into that one. Lot to unpack there, isn't there?

Mark

The the biggest question I have is that in even in his wildest dreams, he didn't think about just not going to school. It was like, no, I have to shape shift to get out of it and then have to learn to speak as a mouse. So as you know from listening to the podcast What I like to do at the end of every podcast is to focus on the positives about your particular child. And you know, um, um, you know, Ivy sounds amazing and full of life and vibrant And fun, but can you tell me, in your words, what is the best thing about your child?

Kate

Oh, best thing. I mean, you know, just so many things. We've already said, like, leading And sense of humour. But I think I love her creativity. That's just It just pours out of her. She's so creative. And whether it's kind of poetry, she writes poetry. She wrote herself a poem before we went in for the assessment on Sunday. She was feeling very anxious. She put it down in poetry form, wrote herself a poem about her feelings. And she loves art and she performs and she loves her rap battles. And she actually, the other thing that. I just love at the moment that she's doing. She started in lockdown an online art club, and it's for anyone of her sort of age. and they get together on Zoom each week and they have a theme and they come create their own art based around the theme and at the end they show each other their artwork and then she picks a star of the week and the star gets to decide the next theme. And she started it in lockdown and it's sort of come and gone, come and gone. And she's she's back on it at the moment, so it's like a ten week thing. And she sort of has maybe ten kids on this

Mark

Oh my god, this is. Can we drop in? Yeah, you absolutely can.

Kate

Absolutely.

Mark

Because Otto does, um, he loves doing how to draw.

Kate

Yeah, yeah.

Mark

You know, that there's like a YouTube, it's how and he loves that because, again, think about the Sherpa analog It's someone showing him how to do a thing, and then he's produced something.

Kate

Right, exactly.

Mark

So he will love to do that.

Kate

Yeah, you can drop in. Yeah.

Mark

The theme is holidays this week, but.

Kate

Yeah, last week it was robots and you know there's play-doh and there's uh sometimes people bake stuff.

Mark

We've made a cake one time and Lovely.

Kate

Anything you like, but art. Oh, yes.

Mark

We'll try and join that on Sunday if we can.

Kate

So, yeah, creativity has got to be, I think, the best thing about it.

Mark

Excellent. Okay, so that is pretty much it for the show. And before I go, I will do the usual kind of just reminding all of the listeners. About all of the ways that you can engage with us and contact us. So, firstly, please follow the podcast or subscribe to it if you haven't already, because that kind of boosts its visibility on all the podcast platforms And hopefully, it gets the word out to more people. Also, tell anyone if you like what you hear and you think that they might benefit from it, then please tell them. Or give us a review if you like. That would be lovely, as long as it' Not awful. That'd be smashing. Also, the socials, we're on the user socials, we're on Facebook and we're on Instagram. I've started to think that maybe I need to do more on Instagram in terms of what I might start doing is putting Some of the what the flip quotes on Instagram so that they're just out there in the world because I think that more people need to hear This nonsense. So I'm going to start doing that. I think there's also Reddit. So I'm going to start a thread for each show. And if anyone wants to discuss anything on Reddit, then you can do it on that. And I'm also on threads, but I haven't quite Worked out how that works. I'm getting there. There's a lot to deal with. And I think that's it for the public service announcements. All that remains For me to say now is firstly, Kate, thank you so much for talking about Ivy and your parenting Neuroshambles that you You've got going on there.

Kate

Pleasure.

Mark

Yeah, so thanks a lot for coming on.

Kate

Thanks so much for having me.

Mark

Thank you all for listening And all that remains for me to say is have a nice life.