Kids refusing medical help | Michelle Parton

EPISODE TRANSCRIPT

Mark

Hello, and welcome to episode forty seven of Neuroshambles. Thanks once again for joining me, Neuroshamblers. Hope you're all bearing up okay since the weather has turned cold. and it's become even more apparent that our children will not dress for the correct weather conditions. Anyway, we've got a really fun show lined up for you where I'm going to be speaking to a new guest Talking about a topic of the week that is quite an interesting one, where it's shone a light onto how bizarre my own family is. We'll also be talking about neurodiversity champions, tiny epic wins, and what the flip moments. So, what are we waiting for? Let's wade into it.

SECTION INTRO

Meet the guest.

Mark

So, this week's guest is a Neuroshambles listener who emailed me to suggest some fantastic ideas for topics of the week. We had a bit of a back and forth and we settled on one topic in particular that I'm quite keen to discuss. So I invited her on to share her experiences and she thankfully accepted. She is a parent of a neurodivergent child, who we'll no doubt talk about in a lot more detail throughout the course of this episode. But for now, I am delighted to You'd be able to welcome to the show. It's Michelle Parton. How are you doing, Michelle? Hi, Mark. I'm fine, thanks. So I say a neurodivergent child. That's the only one you. sort of professed to. But you do have more than one child there, don't you?

Michelle

Yeah, yeah, I've got two children. Only one diagnosed autistic with PDA. And then my younger one is undiagnosed because I just haven't had the time to do any referrals or whatever. So I I think she's probably autistic

Mark

Having the wherewithal to strap in and go through another diagnosis process. Yeah. It's like, oh, just going to pause it for a little bit, give yourselves a bit of a breather and then Do it again, I guess. So, in terms of the ages, then, so your eldest is diagnosed autistic, and she's 11. Does she have any other co-occurring conditions?

Michelle

I mean, you can't get P D A officially diagnosed.

Mark

Not officially, but they do mention it in the notes, though they did with India. Certainly. She's well PDA. I don't not that not officially, but I w I was reading between the lines there.

Michelle

Yeah, so I think her notes say with demand avoidant tendencies or traits or something like that. So yes, basically Autistic with a P D A profile is our eleven year old. And the seven year old? So she's uh just crazy. But she doesn't have any is that diagnosed or suspected crazy? Yes, very definitely, definitely crazy.

Mark

Okay, fine. Well, thank you for introducing me to your setup. I am excited to talk about this topic of the week, so let's get started.

SECTION INTRO

What's the topic of the week?

Mark

So, as I mentioned, Michelle emailed me with a few suggestions for the topics of the week, but one in particular jumped out at me because Because it's one that I've experienced a lot, particularly with India, and I haven't heard that many other people talk about it. So when Michelle mentioned it, I was like, oh, oh, another one. And I was quite keen to swap stories and see if we could shed some light on it. So this week's topic is the nightmare of our kids steadfastly and resolutely refusing all medical assistance. So, this can manifest itself in a reluctance to even admit they're in pain, or attempts to completely hide the physical symptoms of an injury or illness, or an extreme aversion to going to GP or hospital appointments. For the record, India displays all three of these, which is a joy. And from reading Michelle's email, I am not the only parent on the receiving end of them. This. So I wanted to swap some notes, see if we might be able to decipher some of what might be going on with our kids in the context of their neurodiversity. So the thing is, all kids need medical assistance at some point, just as all humans do. It's, you know, we are frail squishy, vulnerable beings, right? So um, it doesn't matter if we've hurt ourselves physically or whether it's an illness or an infection, we all need to see a doctor at some point or go to the hospital. At some point, it's not ideal. Obviously, none of us want to do that, but it's a fact of life. And with India, it is always Hugely dysregulating and it's led to some pretty inventive avoidance strategies. I don't know if yours Is the same?

Michelle

Um, I'm not sure about avoidance strategies, but certainly both my children are terrified of the concept of going to the doctor or hospital or whatever. So my my youngest just gets a bit um scared and whiny, whereas my eldest is just stubborn, straight down the line.

Mark

No, I'm not going, not going, oh that'll be the P D A for you as well So I take 'cause the thing that India does is she hides it. She if she's hurt herself, she will not let anyone know. Even if I see her do it and I'm like, Do you hurt yourself? She not only kind of doesn't tell me, she gets angry. She gets actually angry that I've suggested she has. And, you know, she'll start growling and get frustrated internally, and then she'll kind of. Like, just run off or disappear. Is that something that Amelie Rose experiences?

Michelle

Um, not exactly. I think Amelie Rose and Ninja are a bit different in that, um, Amelie Rose refuses medical help. So she refuses all treatments.

Mark

Oh, we'll get onto that.

Michelle

Yeah, I think it's more Lydia, my youngest one, who, um, doesn't doesn't like to admit that she might have um a a hurty bit or whatever. Right, okay.

Mark

I've got a perfect example of Of this in India, that really beautifully illustrates this. And this is from my birthday this year because I was solo parenting a lot of mother on my birthday this year, and India insisted that she was going to make me breakfast in. Bed. I was like, great. It was adorable. It's like, yes, fantastic. I'll do that. You know, it's fine. I don't know what I'm going to be served up, but I am going to eat it up with a smile on my face, yum it down, and thank her. So, about Probably six in the morning, and I'm still sort of asleep. I hear Otto coming up the stairs, and I can hear Otto coming up the stairs because he's very heavy, uh heavy-footed, so he's clomping the stairs and He opens the door to my room and he sneaks up to the bed. And I think this is adorable. He's going to wish me a happy birthday. And he leaned over to me and he whispered into my ear very gently. He went, Daddy. There's a mouse in my room I'm immediately awake. This wake go. Oh, really? Oh. Fine. Okay. But I'm really tired and I think it's only a mouse. Like, what what harm can it do? It's fine. And we've got a cat, you know what I mean? So the cat's gonna Just get it's not me you should be telling, it's Loki, our cat, right? Um, so I just sort of said, Oh, it's fine, and he was like, Well, I want to catch it. I was like, Okay, well, use peanut butter. Apparently, that's a thing. Oh, it attracts mice. Don't know why, but it's apparently a thing. So I was like, use some peanut butter. I sort of snooze the child for a little bit just so I can maybe try and get a tiny bit more sleep. And I don't hear anything for a while. There's a bit of commotion downstairs, but nothing massively untoward. And then a little while later, India comes back into my room and she opens the door and she's got my breakfast It's toast with a bit of jam on it. It's like great. But her face tells me immediately that she's disregarding Regulated. She is furious about something. It's not like a lovely birthday greeting where she smiles and jumps on my bed and wishes me a happy birthday. It is. Just a scowl. And she kind of walks over to me and kind of thrusts it at me in the way that I imagine a prison guard might give it to a prisoner who's in for life. It's like, take it. I was like, okay. Thanks. So then I say, is everything okay? And she sort of like goes very quiet and she kind of nods and it's like, obviously she's not. And then I notice she's got blood. On a top. So I'm like sitting bolt up right now. I'm going, what's going on? You okay? And I said, what about this? Is that blood? And she went, I didn't touch the glass. Right. So at this point, I'm like, what? What glass? I didn't even bring glass into this. What is this? So then I'm trying really hard. to understand what's going on. And I need to see because she's obviously cut somewhere, right? I'm trying to see where it is. And I say if you cut yourself and she's just ref Refusing to say anything, and she's like hiding her hands. So I'm like, okay, what the hell scene is waiting for me downstairs. So I run downstairs to Otto's room where they were trying to catch the mouse, and what had happened is they tried to catch the mouse and they'd knocked a lava lamp. Off Otto's table. It smashed and exploded on the floor, right? Now, I don't know if you've ever seen the inside of a lava lamp, but it is full of. oily water and this was a glitter one right there was glitter and oil and broken glass and blood Fucking everywhere. So I'm just like, this is this is my birthday surprise.

Michelle

Yeah, happy birthday, Dad.

Mark

So that that's kind of background. That's that's sort of a slightly a sidebar here to what the real issue is that in India is bleeding. And won't let me look at the cut and won't admit that she's bleeding, despite the fact there's blood all over her. So eventually I managed to kind of prize her hand open and see the see the cut. It's not too bad. Like, it could be a lot worse. So, I'm thinking that's okay. Now, my issue is, I can't put a plaster on India. She's incredibly sensory, and we'll get into this in a little bit. But she won't let me put a plaster on. So I have to basically get some kitchen roll and sort of roll it up and put it over the cut. But she also won't let me put seller tape on the kitchen roll to keep it together because it's the same issue as the plaster. Yeah. Right? And she's already dysregulated, and this is making him more dysregulated. I still haven't cleared up all the glass in Otto's room. So it's it's an absolute carnage. And in the end, anyway, I made her kind of hold the hold the kitchen towel. This was just a little illustration in how India navigates this sort of dysregulation and how there is this shutdown, really, to when I ask her what's wrong or to tell me what's going on or to where she need she actually needs medical assistance.

Michelle

Yeah.

Mark

And I don't know What is at the bottom of it? Yeah. And hopefully we'll sort of get into this and we'll look at some potential things here.

Michelle

Yeah. I mean, in that situation, do you think it was that India was worried that she was going to get told off for breaking the Lava Lamp.

Mark

Yeah, that's an interesting point. I don't think that was necessarily the case because it is also something that I've seen before. Like it is it is a regular thing in that if she hurts herself. like I will notice that and we'll get into the many times that this has happened with India and the potential reasons that I think have have led to this sort of shutdown and this reluctance to share, you know, what what is quite evidently a medical help and a need for medical assistance. Yeah, I don't know. That's interesting. It's interesting that, um, yeah, to think of that, that it's not to do with the medical thing itself. It's to do with the sort of the repercussions.

Michelle

It might be to do with your reaction to the medical situation. So, for example, Lydia, my youngest. if she's got like a a scab or whatever and she picks it and then she's got blood running down her leg, I might say, Oh, Lydia, you're bleeding and she'll go, And I think it's because I've nagged her in the past about don't pick your scabs because you'll bleed your scabs. And so she's just kind of um avoiding being told off for picking her steps, no she's done the thing that I told her not to do. But I mean, who it's going to be different in every situation, isn't it?

Mark

So obviously, we talked about a reluctance to admit that they need the medical help. We'll unpick why that potentially is in a little while. But you mentioned that yours have dysregulation about the prospect of going to the doctor. And that's definitely another thing that India Experiences. How does that manifest itself with your lot?

Michelle

It's not, I'm not sure they get dysregulated, I think, about the idea of going to the doctor. It's more just that they They don't want to. Well, they don't. I don't know. They're just scared of what will happen, I think. I think they're scared of what the doctor might say or do to them.

Mark

Right. Okay. So so when you have to 'cause obviously you have to go to the doctor sometimes, they are feeling ill or whatever. do you have to sort of employ any strategies to get them there? Or are they largely compliant but just very vocal about it?

Michelle

Well, to be honest, I haven't really taken to the doctor very much because it it the the reluctance, um no, the sort of refusal gets in the way. So fortunately Lydia hasn't been very ill and hasn't needed a doctor, but on the occasions when Amelie Rose has had earache uh yeah, so she's had an ear infection a couple of times.

Mark

Yeah.

Michelle

And I have managed to get her to the doctor about twice, I think, sort of just with a lot of reluctance, but then she's refused to take the medication. Um, because it plays a lot of water.

Mark

Yeah, yeah.

Michelle

And so now it's more a case of, well, if she says she's not gonna go, then it's kind of like, Well, there's probably no point really Well, I guess it's different with P D A, isn't it?

Mark

Because you need their buy in to do anything. So you could maybe somehow wrangle them into the doctors, but then as you say, even if they get diagnosed with something. and then they get prescription medication. If they're not on board with the whole idea, they're not going to take it. It's a waste of everyone's time. So I guess it's a case of then assessing whether they can just kind of deal with it. And how and how serious it is.

Michelle

And I'm very lucky that neither of my children have had anything very serious, like no broken bones or anything like that. So I haven't had to take them for anything serious.

Mark

Yeah, I've had a couple of incidents. There was an an occasion with India last year where she had Lyme's disease.

Michelle

From a tick bite, oh no, and Lyme's disease you cannot fuck around with.

Mark

Like, it is potentially like if it's not, if it's treated and you get it early, obviously it's fine and nothing goes wrong, but if it's untreated or it gets worse, then obviously it's really serious. So we couldn't do you know what I mean? There's no just waiting that out. We have to go. And the the issue was that India had hidden the symptoms of it for ages. So India had noticed the rash on her body, so would run upstairs and get her pajamas on without being asked. So we didn't see it. And when I say we wasn't like months, it was like a few days that we were behind the curve. Then we noticed it. You know, Tam noticed it separately, told me to keep an eye on it. But again, when you are trying to keep an eye on it and you say, India, can we see the rash now? She gets really dysregulated, really furious, will not comply. And obviously, I'm not you don't want to hold your child down and start frisking them for a ration So it's really, it's a really tricky thing to navigate, but obviously, it's serious, right? So we knew that was, and we'd obviously been on. On Google, and it's never a good idea to Google symptoms of any illness. But we thought that's what it was. So we had to go to the doctor. The doctor went and had a look at it. Tam had to deal with taking in India to the doctor, and that was. Not pretty by all accounts. And the upshot of that was that she had to then get her blood taken.

Michelle

Oh, no.

Mark

Which is a whole new level.

Michelle

Did that happen? Because a doctor tried to get Amelie Rose to have her blood taken, and Amnie Rose has just point blank refused. Really? Oh yeah. So uh even though I've talked her through it, I I took her with me when I went to get my blood taken and she just she just won't she won't consent to having her blood taken.

Mark

And I think it would really be helpful, but she just won't. Consent to it. This is the thing that is, yeah, because I don't like getting my blood tests done. I like, and no one does. It's surely. Kind of awful. And this is the thing, right?

Michelle

So I obviously don't like it either. It's not my idea of a nice day out, but I do it. Because I know it's beneficial and helpful.

Mark

Yes, but it's the but that's the thing, isn't it? Is that I think as an alleged neurotypical You sort of yeah, things some things are unpleasant, but you tolerate it, you put up with it, right? And it It's very different for our neurodivergent kids because whatever is going on is felt at a very extreme end of the thing that might be a minor irritation or a minor inconvenience. To us, it's incredibly extreme and it's incredibly visceral. So it's not a case of them just kind of sucking it up because it is already worst case scenario, I think, for them, for certainly for India. So the blood tests and having to get her to take a blood test, I like I had to do that one. And It was really hard because, well, firstly, just having to explain it, that actually this could be quite a serious thing. You know, again, India's PDA, so to try and get some sort of buy-in, she was incredibly reluctant. But I did manage to get her there. That was, she was really angry about it. At one point, she went, They're stealing my blood. Yeah. And it went. It's not stealing. And she went, well, they're not paying for it, are they? It's like, that's a very fair point. But no, it's So I I managed to get her there. I tried to make it as fun as possible. I tried to do that, you know, after that we can go in the cafe and have, you know, what Whatever you want in the cafe. But that's again, that's not really enough. If it is that sort of visceral reaction, it's not really enough. So we went there and India basically kind of shut down and scowled throughout the whole thing. And we're in the waiting room and oh, they've got fish in there, so I'm trying to get interest around that. No, not interest. In the fish, I was, they were great, and I managed to get her in. Basically, I sit her on my knee and I get her to look away. while the doctor has got uh is is doing the blood test. And I've got my phone out and she's watching Bluey on my phone and I'm really trying hard just to distract her, like everything. She's asking stupid questions about Bluey. to try and I managed at one point to make her laugh and I was like, wicked, I've managed to take her mind off it enough because the thing about the blood test Is it's not just like it's not like an injection, whereas injection is like an in and out. A blood test is it goes in, it stays in, and it's in for quite a while until they've got enough. Which is and that's the bit that feels really weird as well if you've ever had it done. I'm sorry if any NeuroShambles listeners are squeamish about this. I know Tam is. Tammy's gonna have to skip through this bit, but I'm just explaining the situation, right? So I'm managing to distract her. And she's able to do it. And we're watching Bluey. And at one point I made her laugh. I got told off by the doctor for me for her moving. And I was like, you have no idea how fucking hard it has been to even get through these doors, Buster. Like this little giggle is the least of your worries right now because she could be ripping it out and running out of the door. So just cut me some slack, right?

Michelle

Yeah.

Mark

You know, we are all, all of us, including you, mate, we're doing amazingly well right now. Don't ruin it. But we did it. We got through it. They gave her antibiotics after that. So it was confirmed that it was Lyme disease. Gave her some antibiotics, but it cleared up and it's fine. I still think she has to have checkups. Every year, though. So, okay. Not looking forward to that one. Yeah, I think Tam and I are going to be swapping duties there. We'll see. Oh, God, if it's blood test, it probably is me because I don't want Tam passing out as well. Jesus.

Michelle

Oh, yeah.

Mark

Well yeah, there's a good reason why you need to go to the blood test then. Yeah, but but that is you know it's just one of those things about the dysregulation about even getting them to the doctor and getting them to do stuff is is never easy, is it? No, exactly. One of the things that uh I wanted to point out is that it isn't something that I've experienced with either of the boys. Which is interesting. Like, if they react slightly differently to needing medical help if they've hurt themselves or if they're feeling ill, for example. So if Jay has got a medical issue He can articulate it. He's got no sort of issues with interoception or, you know, identifying what's wrong with him. He will articulate it loudly. But he's got no major problems going to appointments or receiving medical advice. Of saying, well, take this and you'll be fine. He's fine with that, which is unusual, I think, in a lot of ways. But I think at his very core, he's quite pragmatic and he's got an inbuilt desire for self-preservation. So, if he's looking after himself, he's going to seek that medical help and he's going to get that. So, that's been quite good. One example is that he's been on anti-anxiety medication for a while now. And he knew that he needed help with his mood and his anxiety. So he was prescribed it, and he takes that. And there's never a question, like, he's never questioned.

Michelle

Is he okay with swallowing pills and stuff?

Mark

Yeah, he's okay with that. He's fine with that. So we don't ever have that problem with him. Yeah, yeah, I mean, in that respect, not always. Yeah, exactly. With that one is you know, swings, swings, and roundabouts. So he takes those, and that medication has made a world of difference to our family, not just him. Yeah, it's genuinely changed all of our lives. And at one point, he suggested maybe not taking it, not for any reason, just like, do I still need to keep taking this? And then we kind of pointed out like the timeline of how much better his mood had been. and how much kind of um less dysregulated he's been since he started taking them. And he saw that and he's like, Oh, yeah, fine and he's You know, he can see the benefits, so he's happy to continue. So, with Jay, we don't have any of that. Otto is a slightly different case, but again, it's not an issue. So, he feels pain very intensely. Very acutely. So if he bangs his knee, it's a massive deal. It's like you know, he's like a big shot. And he feels it and he needs that reassurance from a parent. So he's the polar opposite of India. In that respect, in that he will come to us for the tiniest thing. Whereas, you know, if he's got a cold, it's the end of the world. Whereas, if India had Ebola, we wouldn't even fucking know about it, right? She'd keep quiet about it. So Otto is like, Oh, over. He had a cold like last week and he just threw himself upon my mercy. So help, help me, Daddy. And it's fine. I like, you know, it's fine because he trusts that. I'm a grown up, and he trusts that I'll do what I can to make it better for him, and I will. So that's okay. So if he needs to go to a doctor or a hospital, he sort of he almost shuts down and just gets really compliant and calm. It's it's quite unusual. Um so once he was four, he cut his leg This makes you sound like a terrible parent. He fell and cut his leg on some garden shears. And it was quite bad. And, and. I, at that point, up until he was four, had only known him with sort of minor scrapes and minor ailments, right? And they were always a massive deal. But this was like a big deal. And I expected him to lose his shit, but he went the opposite way. Oh, okay. It was really interesting. So he just went, okay, I need help. And he was. Strangely kind of well, like I say, compliant and calm. And so I then obviously got managed to take him to the hospital and they sorted him out. But again, you know, he was he was distressed, but not You know, completely overwhelmed by it. It was really interesting. So it was the opposite of what I was expecting. And I, you know, I prefer that approach as a parent. It makes it much easier. Because I think it's one of the things I wanted to touch on. That as a parent, you want to help your kids, right? We are hardwired to want to help them and to make them feel better when they don't feel well or they've hurt themselves. And it's so frustrating not to be able to do that, isn't it?

Michelle

Yeah, absolutely. And that's why I suggested this topic in the first place, because it's heartbreaking watching them go through pain or discomfort. And not just feeling so helpless and frustrated and sad and you know, all the rest of it, especially if there is a solution and they just can't tolerate it or can't manage it or can't access it. So they just have to suffer. And it's just horrible as a parent to witness that.

Mark

Fuck, I know the answer here, guys. Yeah, I just trust me. I know what I'm doing. And there's that sort of that. I don't know. And sometimes it's hard not to take it personally. Do you know what I mean? To go, why don't you trust me after all these years? After all the shit I've done for you, and you still doubt me. You know? Yeah.

Michelle

And I think trust is um yeah. I when you were just say talking some about some of those stories there, a trust came up in in my mind because It's a case of, well, do they trust the doctors to do the right thing to keep them safe? And do they trust us? to do the right thing and to um I don't know.

Mark

I think trust is is a big issue and I don't know quite where but fits into it, where that comes from but I think that certainly for India, it's a trust thing, which is really difficult to get round. How do you instill trust in someone even even after all these years of advocating for her and helping uh No, it's not that she doesn't trust me. I think she does trust me. I don't think. But with India, what's quite interesting is that I knew that we were doing this episode and I was having some one-on-one time with India. And I was playing the Woody Rather game, and I just thought I'd sort of try and unpick how deeply felt this issue with going to the doctor is, right? And And I went, Would you rather eat a cup of slugs or go to the doctor's? And her first question, which was adorable, was How did the slugs die? And I was like, why? And basically, if it if they died of natural causes, then that would have been all right. She'd have gone for the slugs. If I killed them just to fulfil this arrangement then she would have gone to the doctor I think is the thing. So that is like, there's the deal breaker for India. So maybe that's it. Next time she needs a blood test, go, dude, you're going to either get your bloods tested, I'm going to stamp on this slug. And she'll do it, right? I think we found the hierarchy. Um, yeah. So I told the natural causes and she chose the slugs and I then I said, so what is it about going to the doctor that is so, you know, that you don't want to do, that you gives you the ick? Um, and she went really quiet and she wouldn't answer. And then I went, is it because you don't trust anyone apart from yourself? And then she laughed. And I was like, I think that's it, isn't it? And she said, I don't trust any strangers. She was like, A doctor can kill you because they're just a stranger. Wow. And then she went further into it. It was a really interesting conversation. She went. They wear gloves, so there wouldn't be any fingerprints. Wow, that would be the perfect crime. How old is India? She's eight, she's really funny. Fright and deeply suspicious. Yeah. Yeah. Yeah. She'd really like this has been, this is what's going on in her mind. And like, I can't disagree with her logic. Yes, technically. This doctor is a stranger and he could get. I mean, it's not going to happen. There's nothing in it for him.

Michelle

Wow. But that's so sad though, that she has that level of mistrust or distrust in people who are there to help her. That's actually that's so deep, isn't it?

Mark

It's very anxiety related, I guess, in that. And I don't know how to unpick that. I mean, it's still I'm still sort of dealing with the just trying to process that really. But it d it gives you it does give you a a little indication, like gives you an interesting window into how strongly she feels about that lack of trust. That she has in the medical profession, which is why, when we're going, you've got to get your blood tested, she's got this dude's gonna stick a fucking needle in me. I don't trust him, I never met the guy, he could be pumping me with anything. I don't yeah. So that yeah, it's it's it's not an easy thing, is it? There's no easy answer to that. There's no easy answer to any of this, is there? We just got to deal with it. So, just sort of going back to the frustration as a parent Sometimes it feels quite sad that they don't come to you with that need, I think. And maybe it's a bit selfish of me to want that. But I I want to But if if my children have hurt themselves, particularly in the early years, you know, I want to be able to comfort them and soothe them and make them And feel better. That's kind of my job, right? Yeah. And if that's not my job as a parent, then I'm just help who does the cooking and the cleaning, that kind of thing, right? So if they. if they have an AoI, right? And they don't come to me with that. Like, so Otto does all the time, to be honest. He could probably dial it back a bit if we're if we're truthful. Jay will as well. But it was only when I started thinking about it for this episode that I realized that I've never had India run to me with an AoI, if you know what I mean. Which is It's unusual, I think. I don't know. Yeah, I think it is unusual. At some point, as a parent, you find yourself in that situation of like, do I just force the medical attention, you know, in favor of what could be more serious long term issues. So we had to do that with India and the the Lyme disease. Yeah. Or as you were saying with your kids, sometimes it's not worth the battle. So you've got that trade-off. It's like, does the dysregulation outweigh, you know, just putting up with a cold? for a bit longer or an earache for a bit longer or something like that. If the dysregulation is so extreme that it's, you know, it It's huge meltdown for extended period of time. I mean, is that sort of a trade-off that you make?

Michelle

You used to add Force force the issue or force this being glib. Well, no, what it took the memory it took me back to, excuse me, is um when when they were little, you know, like age two, and you're trying to get Calpol into them.

Mark

Oh, Calpol.

Michelle

And like I you know, I've heard I heard so many parents at the time say Oh, my child loves Calpol so much. I put squash in the cowpole syringe so that they can suck on that because they keep asking for Calpol and I can't keep giving them Calpol

Mark

Oh my God, what goes on around your neck of the woods? All these kids addicted to squash syringing it into their faces in back alleys Jesus. But yes, like Otto loves Calpol. It's got sugar in it, right? He loves it.

Michelle

Yes. So my kids are unusual because they won't have Calpol. They don't like Calpol. Whatever brand or flavour it is. Nope, it tastes disgusting. It's horrible. I'm not having it. And when they are young, you can try and force it down their throat literally, but as they get older You can't do that. And you don't want to either.

Mark

Yeah, exactly. Because you know there's a reason for them refusing. It's not when you understand that it's not just a matter of preference. Oh, don't fancy Calpol tonight. It's a much more visceral response to it, that they actually, you know, it's a bodily response of they can't do it. It's not that they won't do it. Then, yes, you know that forcing them isn't Not going to work. India is exactly the same. You won't be surprised to hear. She will not take cow pole and will just put up with a temperature or a fever or whatever it is. And we only know that because we can. Feel it, and she's gone quiet. Oh, and you can't take a temperature. She won't tell us that that's going on. Can't take a temperature, you just know, you just know, right? So Again, she's sort of making that. She's taking that decision out of our hands. But you're right. Yeah, you can't really force them to do it. What I thought might be quite interesting would be to look at what. potentially is at play behind this reluctance to accept medical help. Because I think there's a lot of different things going on here. So the first one, and one that is very keenly felt by India, is sensory issues.

Michelle

Yeah.

Mark

Particularly with plasters. As I mentioned earlier, the story about the plasters, she cannot, like, freaks out, is immediately overwhelmed by the prospect of putting a plaster on. I think that is one of the reasons that she hides uh some of her physical injuries.

Michelle

Yes. Is that anything that you're two Experience. No, my girls love plasters. I really love that. They will, yeah, I keep plasters in my bedside table drawer, and I frequently find that The drawer has been raided, and the plasters have been taken, and they have been stuck in various places, sometimes on bodies, and sometimes not. But um no, I d we don't have problems with plus.

Mark

No, I I absolutely d do not fear my plazas being scrumped. There's there's no danger of that at all. So she's always hated stickers. As well. That's always been a big thing.

Michelle

That's so unusual because kids usually love stickers.

Mark

I know, right? So every time if you go. You know, anywhere. Like parties, birthday parties. Do you want some stickers? And India's like, No. Like, you've just offered a like something really unpleasant. Would you like this dead fish? No. So she's a hard no for stickers for India, which is awkward sometimes. Like when she was little at the dentist's, and it's like, Oh, you've been a good girl. Would you like a sticker? And she would basically say no, and I didn't want to disappoint the dentist, so I end up walking around with the You've Been a Brave Princess sticker on me, right? So she would choose she would choose the sticker and then I would put it on and then we've sort of fulfilled our duty to the dentist and India doesn't have to deal with it, right?

Michelle

Congratulations, Marvel, getting her to the dentist. You get her to dance.

Mark

Oh, yeah, exactly. I have been a brave princess today. Thank you, dentists. So it's I and it's the glue apparently. I quizzed her on this recently as well. She doesn't like the stickiness of the glue is a big issue. So again, like after she had her blood taken, the doctor wanted to give her a sticker. I was like, hasn't she already been through enough without this? So again, I had the I had the sticker on me. The doctor thinks I'm mental. Stealing my kid's sticker. Do you know what I mean? It was like, no, it's just the thing we do. Don't worry about it. But to India, it's like I'm taking a bullet for her. You know, like it's one for the team. So India explained to me that plasters are way worse than stickers because they go on your skin. Stickers is on your clothes, right? But plasters are on your skin. And I I kinda I know what she means. Like, because when you peel it off and you get that, all that gooey stuff, and it's discolored, and maybe it feels weird. I don't know, but like I said, it's so keenly felt. that it's not even an option to put a s a sticker on. And actually, it is way more dysregulating to India, even the prospect of doing that, than it is to bleed out. Yeah. She'd rather bleed out than have a plaster. Which is horrible. Like, as a parent, it's a really hard thing to navigate. Fortunately, it's not happened that it's been so severe that we've had to, you know, genuinely force a plaster on or anything like that. But, you know, it's going to happen one day. There's going to be it's going to I'm not looking forward to that day at all. So that's the that's one of the sensory issues. That's the feel, right? The feel of different things. Another sensory issue that India has that I'm wondering if your girls have But I I'm starting to realize that India is just a very, very special case here. It's just like an India special episode. Maybe it's not neurodivergency at all. Maybe it's just this is just an India thing. If there are any NeuroShambles listeners at home that have neurodivergent children that are experiencing the same level of aversion to this kind of thing as India, please let me know. So I don't think that I'm going bonkers. So another one with India is the smell of things, the smell of ointments and creams and like headlice shampoo. Right, stuff. Yeah, all of that stuff, right? But she's got a very keen sense of smell, so she gets very angry if we have to put a cream or an ointment on because, right. They don't smell to me. I cannot smell anything on this. I'll go put it right up to my nose. It won't smell of anything, but India will smell it and will get really freaked out by it. Is that just an India one again?

Michelle

I am sure you're not alone, and there must be other Indias out there. My girls don't seem to have a strong sense of smell, so that's. not so much of an issue. It's the the the problem Amery Rose has is with the feel of creams and ointments.

Mark

Okay, that's interesting. Yeah.

Michelle

Yeah, because it's slimy. Yes. But it is more than that. So for Amelie-Rose, it's all about the sensory issues. So she has got incredibly bad eczema.

Mark

Right.

Michelle

And this is another example of how it's heartbreaking as a parent because I can see her body is covered in sore eczema patches which bleed and um so her clothes and bedding are always covered in spots of blood and it's itchy and, you know, it it prevents her from doing things like going swimming.

Mark

Which I presume she loves being near the water.

Michelle

Well, she does. She she used to really love swimming, yeah. Um, and when her eczema got really, really bad, um she realized that chlorine chlorinated water just makes it sting and itch so insanely that she just she just can't go anymore. So this is the frustration, right? I know, because I have X-Men myself, I know that if you treat it with a series of creams and ointments and stuff um it gets better and then she wouldn't have the problem. But because the cream makes her feel cold now Amelie Ray's is very, very susceptible to very sensitive to the temperature either too hot or too cold. And once, you know, even if you warm the cream up or something in the airing cup, once it's on your skin, it evaporates. And that automatically makes your skin feel colder.

Mark

Right.

Michelle

And so she feels cold when the cream's going on. She doesn't like the feel of it being slimy. And there have been too many occasions where we've tried different creams that have actually stung and felt horrible.

Mark

Right. So again, she's happier to kind of have the eczema and the itching. Do you think she weighs up that decision? I'm still wondering how conscious he is like of you know, if she's like, look, I I could get rid of the itching or I could, you know, do the cream, but the cream's not going to happen.

Michelle

We've had that direct conversation several times. Yeah, and she consciously opts for the known, which is the itching that she is now accustomed to. and she says she can't even imagine what life would be like not having eczema, rather than the creams, because she really hates the creams.

Mark

Right, okay. That that resonates with them The conversation I've literally just had with Pete Warnby, which is g about transitions, is that for autistics, the known is always preferable to the unknown, even if I know it's shit. You know, it's better than what it could be like, which is like double shit.

Michelle

Yeah, yeah, totally. Yeah.

Mark

And it sounds like that's what's going on with Amelie-Rose.

Michelle

Yeah, yeah, absolutely.

Mark

Stick or twist, it's like I'm going to stick with this, even though it's really itchy. And it's heartbreaking to see them itching, isn't it? Like with eczema, because like India had just mosquito bites or something like that, you know, just a bug bite. But it was really itchy and she's scratching and grimacing. And when you suggest putting on antihistamine to get rid of it, it solves it immediately. No. Hell no. And she'd rather she'd rather stay with that.

Michelle

Yeah. Which is so hard. So hard. It's really hard. It's really hard to stand by as a parent and and watch and watch that.

Mark

Yeah. For India, though, it was not the feel. It was the smell. When India had Lymes disease, we had to put cream on her rash. Again, that was a non-negotiable one. And there was a massive, massive faff to do that. I had to and I've I've spoken about this on episode twenty eight of Neuroshambles. Which is the medication one with Danielle Yarta Hall. So, forgive me if I'm repeating myself, Neuroshamblers, but this is directly relevant to what we're talking about: is that I played the game, I gamified the whole thing. So I would sort of turn up and go, It's Dr. Stink. And that was my I was Dr. Stink with the stink cream. And then Otte would accompany me and he'd be Nurse Gentle. That was his role. So we had this whole thing where, like, Nurse Gentle would hold India down, and then Dr. Stink would come and put the cream on. So it made it kind of fun. To get over the, like, just to at least soften the blow a little bit, but it's a massive rigmarole. Yeah. It's a massive effort Which is exhausting, isn't it? It is, but I'll take that over the dysregulation and the factory, you know, the potential medical consequences. But so there's so much of Parenting their emergent kids. I'll put up with the exhaustion just to for a for a happy life. So obviously we've got the feel, the sensory issues, the feel of things and the smell of things. And and we touched on this briefly, but the taste of things is a big issue with the cow pole. It's a hu it's a huge one. And this is one that Jay has, actually. Otto, largely, again, will just trust anything we shove in him. Open his mouth, yum it down, move on. It's fine, he trusts us. He doesn't want to do any thinking. Whereas whereas Jay, we've tried him on you know, there's a number of things that we did with Jay, uh, melatonin Was like a massive issue. He hated the chalkiness of it, so he refused to. So that wasn't the taste so much as the texture. So then we got him some liquid. which was like a massive faff to get hold of the liquid. And Tam managed to pull some strings and get hold of the liquid. And he take took one tasty. It was like, no So it's like, oh, God's sake, do you know what I mean? We've tried really hard to get hold of that shit. It's a hard no.

Michelle

Yeah. And we've had massive issues with melatonin as well. But interestingly, it has it's not difficult in our part of the country to get the liquid. So Amony Rose was first prescribed melatonin. oh, goodness, I don't know, years ago. And what we were just given as standard was the liquid solution.

Mark

Oh, really?

Michelle

They just went straight out of the box. Nice. But y it wasn't even discussed. It was just here's the melatonin. I didn't even realize they could come in tablets. But it worked very well for us because Amelie Rose is terrified of swallowing tablets because she's scared she's going to choke. And then when she has tried Swallowing a tablet and she hasn't been able to swallow it down, and it's kind of got stuck on the back of her tongue, and then it all starts to dissolve, and then it's hit.

Mark

Oh, that's horrible, isn't it? Yeah, yeah.

Michelle

So, she definitely doesn't do tablets, but the liquid melatonin was brilliant. while the NHS were giving us a certain brand, and then they just changed the brand that came in the prescription. And that tastes disgusting. My God. Yeah, in comparison. Um and I think over the years that Amnirose was taking melatonin, she had grown used to the taste. and she liked the taste and she looked forward to taking it every night.

Mark

God, oh God, that must have been wonderful. A wonderful few years for you. Well, it it w yeah sipping melatonin by the fire as you read stories to your children.

Michelle

But as soon as this other one came, and I went through so much rigmarole to try and get The one that she likes, and it's just incompressible. So, anyway, yeah, so that's a pain. So, she hasn't taken melatonin for a year

Mark

Oh my god, and that disrupts your sleep and you know, and everything's a whole bedtime team.

Michelle

But anyway, yeah, so taste of liquid solution melatonin And not being able to get hold of the right sort has been a big issue.

Mark

Yeah. I mean, what I did, because again, India had that thing about taste and the antibiotics always taste awful Don't quite know why. So, India had antibiotics for the Lyme's disease. And again, this is a non-negotiable. This is not a preference. This is like, this is really serious. Don't do this. So she understood that and would always just kick up a massive stink when it had to actually come to taking it. But I would, and again, this is what I discussed on a previous episode of Neuroshambles. Is that I would stand by with two frubes and then I would fire the antibiotics into her mouth and then I'd get a froube and fire that in straight away afterwards as well to try and hide the taste. I'd like be just loading her with frubes just to getAmelie-rid of the um but it worked it did it did work that way I'm not gonna suggest that that that would work with the friend Amelie-Rose but um But for India, I think because she understood the kind of the importance of it, I think she was able to deal with it for that, but but very reluctantly and very unwillingly. The final thing about sensory overwhelm: I think that medical environments in themselves are overwhelming, like hospitals and doctor surgeries. Are they have a weird smell, like a clinical smell, I think, which which I don't think it is ever articulated to me, but I think probably is at play. So if you think about how strange that environment is, and you're going into that hospital, and everything's massive, and everything's sort of like sterile. And echoing and clattery. Yeah, and bright lights as well are there, the strip lighting and the

Michelle

And the weird silence in a waiting room.

Mark

Yeah, there's there's all it's it's they are quite unusual places and I think that there's probably that uh at play a bit as well, I think certainly with it with India that that can't help.

Michelle

Yeah, no, I agree.

Mark

And as an aside, waiting rooms are dreadful places, aren't they? Yes. Like with neurodivergent kids. Bringing neurodivergent kids to a waiting room in a doctor's is my worst nightmare. I hate it because my kids are dysregulated for a bunch of reasons, and the way that they deal with dysregulation. It is to move and make noise and flap about and just be fizzy, right? No one else in that waiting room wants that. I don't want that. It's like they are just annoying everyone else. And those, these people are ill. They do not need it. They do not need it. And I feel awful and I feel guilty. And uh the last thing that anyone needs is boisterous kids pinging about just being being fizzy. So I'm mortified and uh yeah, it's it's never pretty.

Michelle

Yeah, no, I can imagine that.

Mark

Now one of the things that I was thinking about when it comes to India's reluctance to accept any medical help Is to what extent this might be a product of masking? Because I know that Indian masks quite heavily. She certainly does at school. It was mentioned in her diagnosis, and it's just something that I've. I know about India. And that's why I was considering maybe why the boys don't have it as much. Because, you know, masking tends to present more prevalently in girls, and those assigned female at birth. So. Maybe I don't know. I'm just thinking out loud. Maybe that is why there's this reluctance to admit that they need that assistance or that anything is out of sorts. Which presents in India as extreme independence. Did your boys not mask then? Jay, no, not at all. Jay is all out. Jay is all up front. No, he doesn't mask at all. Otto, no, no, for the other way. So Jay is explosive and just, you know. And Otto can't he doesn't really hold it in. I mean, I'm sure there is an element. I'm sure there's an element, but it's more to do with with with Otto. It's avoidance, which isn't masking in the same way. He gets overwhelmed and he has to remove himself from the Situations. It's not like I'm going to sit in this situation that's dysregulating me, and I'll just, you know, just suck it up and deal with it and then, you know, melt down at home. he melts down there and there and then. So no. Whereas India, I suspect that there's a lot more going on there. Than she lets on at school.

Michelle

Yeah, I mean, certainly the story you told about doing her blood test, it certainly sounded like she was masking at the doctor's 'cause she was kind of quiet and sort of shut down a little bit, which would be in a public environment masking the turmoil that's going on inside.

Mark

Yeah, yeah, yeah, absolutely. I mean, I don't know. Do your girls mask at all?

Michelle

Yeah, definitely at school.

Mark

Yeah, I was just wondering if the the this reluctance to accept medical help is just 'cause they're so used to just dealing with stuff. And putting up with overwhelm and dysregulation and discomfort, and they just, you know, so it's a way of just carrying that on. So I got a really good example of this recently. Whereas India at school fell down the stairs. Oh, no. And she slipped bum first. It wasn't like head over heels, but she slipped bum first and she scraped her back and she also cut her knee and had quite a big cut on her knee. Wow. And so I sort of noticed it when I got home and I was like, what? What happened? And she was like, I fell down the stairs, which was quite unusual, actually, that she told me thinking about it. But I think that's probably because it was in the past, it was history. You know, she was recounting a tale rather than she needed it there and then. I think maybe that's what it was. Because she wasn't bleeding and she wasn't, you know, in pain anymore. So I said, Did you tell any teachers about it? She was like, No, like, why would I? You idiot man. So I was surprised that we that the teachers didn't notice. Because she's bleeding from the knee. Like I get the bruise is hidden because she got a T shirt over it, right? But she's bleeding from the knee. So she would have definitely been doing something to avoid them knowing.

Michelle

Yeah.

Mark

Because teachers normally spot that and they usually let you know. Right. Yeah. Normally you get a note from school if They've had an accident. Like when Otto and Jay were sort of younger, I would get a note every day, especially Otto. He was constantly hurting himself. I'm like, oh, what is it now? You get handed the note. He's like, oh my God, what? How did you do that? What the hell?

Michelle

So I'm the same with Lydia. She must have proprioception issues or something. She doesn't really quite know where she is in space. So at least once a week get a note home saying what's happened here. And the worst thing is, I also get a phone call because the school's policy is to ring you if they've bumped their head. So the pho the phone rings, it's the school. I think, oh no, what is it? And the receptionist says, Hello, it's nothing to worry about. Just a routine head bump call.

Mark

Right. Routine for Lydia. Not for anyone else. Is she bleeding? No, fine then. Okay. But I reckon I thought back about this. I've never had a note about India having some kind of medical accident at school, which is r actually quite strange. So I think I think there's a lot of masking going on there as well. I think at school she will hide it. Yeah, it's really it's really odd. Um and not something that I'm used to with the with the boys, certainly. But that's the thing, that she's not like a wallflower by any means. She is rambunctious as hell. you know, she like at home, she's climbing over things, she's really boisterous, you know, she's she's definitely a you know, up on atom kind of human So I'm I'm surprised that that hasn't happened, but you know, she's obviously just really good at hiding it at school as well.

Michelle

Yeah. And as you say, if she's good at hiding, you know, whatever struggles she has by, you know, masking, then maybe this is just part and parcel of that.

Mark

Yeah, yeah, interesting. I think another of the potential reasons why our kids might refuse medical help is this need for predictability and control. As we know, a lot of Autistic People rely on that routine and that predictability to just manage their anxiety. And if nothing else, medical environments are unpredictable. They're completely unfamiliar places as we kind of talked about earlier. But also, waiting times. Fucking mystery. Like how long are we going to be here? Who knows? I've packed an overnight bag just in case. You know, so there's that element to it as well. And the fact that there are professionals, people she's never met before, who were who she's having to trust for help. These strangers that she talked about that she's now deeply suspicious of. That's going to be quite dysregulating, I think, for autistic kids. And the sensory overload.

Michelle

And each time you go to the doctor, it's a different doctor. It's not. Yeah. Who are you going to See today? I don't know. Is it a man? Is that a woman? I don't know. Are they nice? Are they not nice?

Mark

Let's spin the wheel and see what happens. So, as well as this sort of unfamiliarity and not knowing what you're gonna get in that medical thing, there's also, as we discussed, the sensory overload of all of that. I think PDA might play a part of this as well. Because if you think about it. If you go to a doctor, you are essentially ceding control to someone else, right? You are they are a doctor. So there is, you know, they will know that doctors are It knows about medicine and you don't. So you're essentially putting yourself in their hands and going, Tell me what's wrong with me. Now, Otto, absolutely fine with that. I don't think that India trusts anyone.

Michelle

Yeah. It's really interesting what you've just said because Amelie Rose has got some life coaching at the moment, and we've just had our sort of first report from that. And what she has identified is that Amelie-Rose prefers or loves it when she knows more about something than somebody else. So she's not interested in school because it's teachers telling her. And she's not interested in what they have to say. She just wants to tell other people about the things that she knows. And so if you don't know about siphonophores or black holes, she will oh my goodness, love it. Info dumping. She actually said the other day, yay, and then I get to info dump on people, which I love. So the fact that the balance of power in a medical situation is so far the other way, isn't it? That the medical people know way more than the child or us about the situation and so on. There's no way our children our PDA children who like to know things could possibly have the upper hand in that situation.

Mark

Yeah, 'cause and then it it feels terrifying for a PDAer, which is potentially why they are they are so dysregulated by the thought of going because you're essentially putting yourself in someone else's hands. you're out of control, that's gonna trigger the nervous system response, which is their fight, flight, freeze, fawn response. And it's gonna be very, very keenly felt. Um, I've only just thought about that. Of that in the context of India and going as well. And what she did in that situation was essentially freeze response. Yeah. But it was a survival mechanism, like fundamentally. You know, it was, you know, potentially that serious.

Michelle

So, yeah, that's true. On the topic of predictability, have you seen that Facebook meme? where there's a picture of, um, I think Ritz crackers or something and blueberries. And the the caption says something like the blueberries are this one could be squishy, this one could be sweet, this one could be sour, this one could be bitter or whatever, and then the crackers are like same, same, same, same, same, same. And th this is why neurodivergent children like the same food all the time because it is predictable. I thought of that meme when I was thinking about this and that need for predictability and how medical situations are just so unpredictable.

Mark

But yeah, and you don't know what's going to be the outcome. And that outcome may well, probably will lead to stinky cream, disgusting tasting medicine, or blood tests. None of those are desirable outcomes, so it's no wonder. One of the potential causes of kids refusing medical help, and I don't know how much some of this might play a part with India or not. I've been throwing a lot of theories out here tonight, is that they don't actually recognize the pain or the feeling. Right. So if they have alexithymia, which I don't I've talked about before on neuros animals, but this difficulty identifying and describing your emotions or bodily sensations, you know, they have a a problem intuiting that and Even really thinking about that, so they might not be able to identify that they are actually not feeling very well. So, when you know, I ask India if she's not feeling well because she's got a temperature, she she says no, that might not be just be her hiding it. She might actually realize that she is.

Michelle

Yeah, that's totally possible.

Mark

And I think there's definitely an element of Alexithymia at play with India. That's where it gets frustrating when doctors ask kids questions about how they're feeling. Yeah. And India just shuts down. And I don't know if that's because she doesn't trust this Suspicious stranger, which is definitely possible from what I know now, or if she just can't describe the sensation, you know, when they say, Where does it hurt? What kind of pain is it? If you have alexithymia, how can you possibly describe the difference between a sharp pain or an ache or, you know, a stabbing pain? Yeah, it's it's It's tricky.

Michelle

And and for all children, because of the fact that they are children and they're still developing, describing emotions and feelings and sensations is difficult anyway because they haven't learnt to match the sensation with the vocabulary.

Mark

Yes, yeah, yeah, absolutely.

Michelle

So it's yeah, it's really difficult to articulate and even more so if you've got alexithymia.

Mark

Yeah, and also potentially interoception issues as well of you know, of that not knowing what you feel. I think that's probably that probably has more of a part to do with pain. I don't know that's interesting what the diff the distinction between lexithymia and interoception are. I think lexithymia is more emotions, whereas interception is more to Do with physical sensations, yeah, that's the distinction.

Michelle

Lydia's got interoception issues, but that's to do with not knowing how it feels to need the toilet, for example. Yeah, no, Otto. Yeah, not knowing um when you feel full or hungry.

Mark

Yeah, yeah. But w I'm just wondering if that is also, you know, part of feeling poorly as well, whereas you don't actually realise that you've got a tummy ache or if you you Something else is going on. Having said that, Otto has interception issues, but also has no issue telling me that he's feeling rubbish.

Michelle

Every child is so unique.

Mark

Oh my god, it's ridiculous, isn't it? They are a conundrum, a puzzle to be solved. Okay, I think one that the final one that I wanted to highlight in terms of potential reasons For refusing medical help is past experiences. If they've had an unpleasant experience in the past. And this again is sort of comes off the back of my very long discussions with Pete Warnby about how autistic people experience this kind of thing. And this fear of the known, right? That they know they've had a bad experience here before, so they are not going to wanna do it again. And if they've had a previous bad experience in a medical setting, that's it. Like, you know, forevermore, why would I want to go and do that again? Like, I know how bad that is. And I know that what I'm dealing with now is better. than that. You know? That familiarity is the opposite of fear. So I I don't know if yours have had any previous bad experiences that have prevented the The body. Yeah, definitely.

Michelle

So, when Amelie-Rose was a baby, she had CalPol, no problems. And she even liked cowpool until she was two and her eczema got really bad and she was prescribed an antihistamine, which was in a liquid solution. And the doctor warned us as they did the prescription. I'll warn you now, it does not taste very nice, so good luck getting her to have it. Um and lo and behold, Amelie Rose was all like yay because she thought she was getting something similar to Calpell. She was only two. um and it was this antihistamine which tasted revolting and since then she has not had any type of cowpole I mean it's a miracle really that she went for the melatonin because um that was you know a liquid thing the same but otherwise There was a very clear cut off when she had when she was presented with a disgusting antihistamine when she was two. From that day onwards, no more medication. Oh my god.

Mark

You know, I mean, if the GP is saying, Oh, it doesn't taste very nice. If you've got particularly strong kind of um, you know, sensitivities with your taste buds, and that just must have been absolutely dreadful for her. So, obviously, it's that's had a big impact. And I think maybe India's aversion to hospital might be, you know, as a result of me taking her to AE when she was 18 months old. So she fell and like cut her nose, cut the bridge of her nose. Blood everywhere. It's quite alarming. But we went in and because it doesn't count as a major issue, it's cosmetic, we were in there for hours and hours and hours. And, you know, so eighteen months, maybe eighteen months to two years old, again, that similar time, right? She would have been aware of where she was. It probably won't remember it, but somewhere deep down there's some very knee-jerk refusal to ever do that again. Maybe that formative experience scarred her.

Michelle

Yeah, and that makes me think of Lydia actually. When she was two, um, we had to take two's a nightmare, isn't it?

Mark

They're all dropping like flies in two.

Michelle

This is a significant age for memories, clearly. Um but yeah, so she had like a disloc dislocated elbow, and so um I had to do the whole thing of waiting around in ANE and taking it to X ray and and then a student doctor trying to pop it back in and then it's not working and having to get a proper doctor in and a student doctor going, okay, I can pop it in

Mark

No, I reckon you can't, mate. Jeez.

Michelle

I don't know, but it subconsciously might have traumatized her.

Mark

I mean, it's traumatized me, and I wasn't even there, Michelle. Jesus, that's fine. So I think all of these things potentially are at play. To be honest, with all of these things, it's a wonder anyone goes to the bloody hospital. It's not all rubbish. Okay, let's have a look at the positives tentatively look at the positives of Kids refusing medical help. It's really difficult to find the positives from this because it's a nightmare to navigate. As we've discussed, it's so Difficult as a parent to see your kids in pain and discomfort and know that you can help them. But then them just being so overwhelmed and so dysregulated that they can't accept or even contemplate having that help Not many positives there. Have you got any positives for it?

Michelle

Well, the only positive I could think of is the fact that um maybe this is one time when being stubborn or determined actually comes into its own and you know, is is good for you because if if you have an earache and you refuse to take medication for it it means that you get hardy to or resilient to dealing or living with pain.

Mark

You're hard as nails, yeah, yeah, yeah. You know, I reckon if India ever decides to have a child It's gonna be a breeze for her. She needs to be a doddle. If she's anything like Tam. Tam was phenomenal. Tam uh refused paracetamol the last time. Which is like, nah, it's a bit much, in it. Dude, it's not that bad. Like, Tam was phenomenal. So if India's anything like that, which I suspect. That she is. There's a positive. Yay! I don't think it was pain free, but I think it was like, you know, just t Tam was definitely able to tolerate it without any any medication. In fact, I was the one on gas and air the first time. It was amazing.

SECTION INTRO

Neurodiversity Champions

Mark

Okay, neurodiversity champions now. These are people or organizations that are doing some wonderful things in the fields of neurodiversity. Do you have any neurodiversity champions for us, Michele?

Michelle

Yes, I've got two. So Amelie-Rose is learning the piano and her piano teacher is the most amazing person. She's called Liz Chandler. So shout out to her. she totally gets Amelie Rose. So before she started having lessons with her, we said to the teacher, Amelie Rose has got P D A, so don't give her any homework We want this to be a fun thing for her, so don't put any stress, no exams, you know, all that kind of stuff. And the teacher said to me, Do you know, I think I think I know someone who's got PDA and I think I might be on the spectrum for someone. So it's just been such a joy over the last couple of years to see Amelie-Rose flourish. with playing the piano. Oh wow. To the extent that it's such it it can also be a regulating activity for her. So if she is starting to get dysregulated, she can just take herself off to the piano and start playing. And it it's it's All because she's had a brilliant teacher who has just enabled her to learn at her own pace and enjoy it for fun. not as a didactic sort of you must learn this.

Mark

Which is exactly what hobbies should be, right? And yeah, that's lovely. And did she do sort of research into P D A to understand strategies? You think, or she just sort of got it and went, Yeah, okay.

Michelle

It appeared that she just got it. Wow, uh, but I'm not sure.

Mark

Yeah, interesting. Oh, that's lovely. So, big shout out to Liz Chandler. Thanks for that. I don't know if she's taking on new students. Do you want me to put details in the show notes?

Michelle

No, I don't think so.

Mark

Okay. Hey guys, don't even think about contacting Liz Chandler. She's busy. The other one you said you got two.

Michelle

Yeah, so um in the town where Amily Rose has just started second School, there is a new thing started up called Beyond Creative Education, and it's been started by someone called Jess. She used to be like a head teacher and a Senko and all sorts of different things. And she's left her sort of safe teaching job behind to set up this new company to provide children who are struggling to access education. in mainstream, the the sort of space to get back into a love of learning. And it's all done through creative things. So Amelie Rose's favorite subject is art. She really loves art. She loves drawing. And so she's having these sort of life coaching sessions with Jess where she's using the medium of of art and being creative to help Amelie Rose articulate what she might be struggling with and start to give us some strategies and just give us some space where she feels really valued and Like a worthwhile human being. Amazing.

Mark

It's in a format that Amelie Rose enjoys, so it's reducing that friction as well. That's amazing.

Michelle

That's wonderful.

Mark

Yeah.

Michelle

So she's she's only been going a few months. So I wish her well in her in her work 'cause it's really good.

Mark

Yeah, that's fantastic. Well, maybe I'll put her details in the show notes. Yeah, do if anyone is around then they can Can check it out because it sounds wonderful.

SECTION INTRO

Tiny epic wins.

Mark

Okay, tiny epic wins. Now, these are the moments that in a neurotypical household wouldn't be seen. As any big deal, but in our neuro-shambolic households, they are epic wins. Have you got any tiny epic wins for us, Michelle?

Michelle

Yeah. Yes. So after a couple of years of Amelie Rose not eating any fruit, because her what she eats is very restricted 'cause there's a lot that she doesn't like the taste or texture of. Um, so she hadn't eaten any fruit for a couple of years. Um the other day she just came into the kitchen and said Can I have an apple please? And I was silently doing a little happy dance inside.

Mark

You can't make a big deal about it, though, can you?

Michelle

I played it really cool.

Mark

Yeah, well done.

Michelle

Yeah, of course. Would you like it cut up? It looks brilliant.

Mark

Like it was tiny and did she like it? Yes. Oh my god Wow, 'cause apples can be tricky in our household as well, because there's like a very, very, very strong divide between like ones who like just the green ones and ones who like the red ones. And not any red one either. It has to be a specific texture. So like the fruit's a nightmare. The suspicion with which my children i eye up fruit before they eat it is really frustrating. So but it sounds like you d you nailed it. You got a good one. So yeah, she eats apples now, which is brilliant. Awesome. That is an epic win. Um, I've got a tiny epic win, which is sort of related to the medical side of things. In the I went to the dentist with Jay recently, so Jay's had to have braces. in his teeth. And he went to a place in Brighton to have his teeth kind of x-rayed and looked at. And the guy said, You're going to need braces And he explained it to Jay in such a wonderful way. And I don't think it was, I don't think he knew that Jay was autistic. I don't think he knew he was PDA. I think he was just a guy that liked explaining shit. So, the way that he talked to Jay about his teeth and the process, because braces. Is a long process. Like the first bit, he's got to correct the align his jaw, right? That's six months of his jaw being realigned and having to wear braces every day. I'm like, he's never going to go. This is going to be like a nightmare. But the way he explained it to Jay was so clear, and also giving him the decision crucially. Of, like, I mean, you could do, you could not do this, but then this is what's going to happen, or you could do this and put up with this for a little while. And then, and Jay was like, oh, no, we'll do that. That's fine. And Since then, Jay has not moaned or complained. He has like he had his braces fitted recently, his um the first set. And he's not once complained. He wore he's worn them every single day, done it himself. He he wore them into school when he didn't have to. The first week, and he was just like, Well, I don't care if people make fun of me for it. Like, I just am staggered by the way that Jay has adopted it without any drama. Like, there is literally no way that would happen with India or Otto. But with Jay, for whatever reason, he's just been on board, and I think it's almost entirely because the dentist Was so clear in how he explained it, and he just pitched it perfectly. I think by accident. How fantastic! Yeah. Epic win.

SECTION INTRO

What the flip?

Mark

Okay, what the flip moments now. I love these. Uh, these are the moments where our children will say or do something that completely flabbergasts us and leaves us Baffled as to how we could possibly respond. Do you have many what the flip moments with your lot?

Michelle

Yeah, yeah, I do. So we were going out for the day to a a water park, this was it back in the summer, and you know, the usual chaos of Getting out of the house and everything. And Amnie Rose came to the front door, and then she said, Look at the sign I've made. And the sign said, Do not smoke or vape around me, or I will kill you. And then in small brackets. that the smoking stroke faking might kill you first.

Mark

Oh my god. What who is this for? What people at the water park? It wasn't direct at you, obviously.

Michelle

So she was like, I don't know whether she was planning to put it to her forehead or put it in her hand it out to people smoking and raping. Just like hold it up.

Mark

Oh, that's wonderful. I love it.

Michelle

Yeah.

Mark

Do you have any others?

Michelle

Yes. Okay. So one Friday morning I woke Amelie-Rose up to start getting her ready for school. I went away and then the next time I passed her bedroom door she shouted out to me Did you know that in their lifetime the average person will swallow eight spiders in their sleep?

Mark

They're just shouting facts at you.

Michelle

She wasn't even looking at anything. She must have woken up with this fact on her brain and just obviously felt she had to get it out there.

Mark

I love it when that happens, when they're just like, I've been thinking about a thing and now I'm just gonna it's just coming out. And you just happen to be there. Receive my fact. I got a couple of what the flip moments. One of them is very relevant to this, which is in from India when I was trying to put cream on her. And her response to that. I was like, I need to put this cream on you. And she went, I don't want to smell like a raccoon that's just come back from the dumpster. It's like, okay. All right, we won't do that then. Doctor Stink will retire for the evening. The other one I had was from Jay recently. And again, just one of those from nowhere moments. He went, Hedgehogs are the cutest animal you can legally own in this country. And I was like legally owned. Yeah. And as I was mulling over this controversial statement, he followed out with, I'm assuming you can't legally own an otter. That would take a lot of paperwork. Like, he considered it. He might have even looked into it, but he decided, nah, nah, it's too much, too much form filling for me to bring an otter home. Yeah, lovely stuff.

Okay, that is it for this episode of Neuroshambles. Michelle, thank you so much for emailing me with your loads of suggestions for topics of the week, which is good. They've all made the list. So, if anyone else wants to email in any topics of the week or any what the flip moments or tiny epic wins or neurodiversity champions, then please email me at hello at neuroshambles. com. So the the other ones that you mentioned are on the list, just just so you know how they are considered. When I find a guest that I want to talk to, I then basically go, Here are all the things on the list. Is there anything there that takes your fancy? And then they they pick them. And we talk about that basically. So they are all considered. So thank you for sending that through. I will also say a big thank you to Neuroshambles listeners if you want to. Follow us on the socials. We are on Facebook and Instagram and TikTok and Threads as well. To be honest, I don't, I can't see much more life. Left in threads for me because I don't get any engagement on it. It seemed like a nice idea at the time, but we'll see. So, you know, if you're going to join me on threads, I'd do it now to convince me it's worth taking part in. Otherwise, that might. Might go the same way that Reddit did all those years ago. Anyway, thank you so much again for listening. And all that remains for me to say is have a nice life.