Why is sleep such a battle for neurodivergent kids? | Michelle Cyril
July 08, 202601:40:39

Why is sleep such a battle for neurodivergent kids? | Michelle Cyril

The issue of how to navigate sleep with our neurodivergent kids is one of the most requested topics on Neuroshambles, so Mark brought in someone who actually knows what she's talking about. This episode tackles the question that haunts pretty much every household raising neurodivergent kids: how do you get them to sleep, keep them asleep, and stop them waking up at some ungodly hour demanding an apple?

Mark is joined by Michelle Cyril, a former children's nurse and now fully qualified paediatric sleep consultant who specialises in supporting families of autistic, ADHD and PDA kids. She's also a parent of neurodivergent twins herself, so this isn't advice from someone lecturing from a textbook - it's advice from someone who's been on the sharp end of three-hour bedtime battles too.

Mark and Michelle break bedtime down into its component parts of chaos: the bedtime routine itself, actually getting to sleep, staying asleep through the night, and waking up - wether that’s ludicrously early, or begrudgingly late. They cover why traditional sleep advice is largely useless for neurodivergent kids, how PDA turns bedtime into a demand minefield, and dive into the knotty issue of melatonin. Anyone wondering whether melatonin is safe, why GPs are so reluctant to prescribe it, or why their kid can't seem to switch their brain off at night will find answers here.

Whether it's a PDA profile, an ADHD brain that won't switch off, or a kid who just runs unnervingly hot in bed, there's something in this episode for most Neuroshamblers.

 

CHAPTER TIMESTAMPS (Estimated)

00:01:48 - Meet the Guest: Michelle Cyril
00:04:00 - Topic of the Week: Why Sleep Is Such a Battle
00:13:39 - The Traditional Sleep Advice That Just Doesn't Work
00:16:13 - Making Bedtime Routines Fun Instead of Boring
00:26:35 - PDA, Demand Avoidance and Bedtime
00:34:06 - Getting to Sleep: Busy Brains and Familiar Stories
00:45:11 - The Melatonin Debate
00:58:39 - Staying Asleep: Night Waking and Anxiety
01:10:46 - The Early Morning Wake-Up Struggle
01:17:23 - The Impact of Poor Sleep on Parents
01:23:02 - Sleep Deprivation and Its Ripple Effects
01:26:44 - Finding the Silver Linings
01:28:39 - Neurodiversity Champions
01:31:48 - Tiny Epic Wins
01:35:58 - What the Flip?

 

LINKS TO STUFF WE MENTION IN THIS EPISODE

Neuroshambles mailing list sign-up (with free PDF of What the Flip moments) - https://preview.mailerlite.io/forms/2414072/190019322933937234/share

Michelle Cyril, Family Sleep Specialist - https://familysleepspecialist.co.uk/

Busy Brains at Bedtime (Michelle's free download) - https://familysleepspecialist.co.uk/busy-brains-guide/

Greeking Out (National Geographic podcast) - https://www.nationalgeographic.com/podcasts/greeking-out/

Michael Gradisar - https://winksleep.online/about-michael-gradisar

Confusional Arousals - https://www.sleepfoundation.org/parasomnias/confusional-arousal

Neuro Embrace, Madeleine Woolgar - https://www.neuro-embrace.com

ARFID Life UK - https://www.facebook.com/p/ARFID-Life-UK-61569140673395/

 

📣 CONTACT US

🌐 Website: www.neuroshambles.com

📧 Email: hello@neuroshambles.com

📸 Instagram: @neuroshambles

🎵 TikTok: @neuroshamblespod

📘 Facebook: Neuroshambles

📬 Sign up to the Neuroshambles mailing list: https://preview.mailerlite.io/forms/2414072/190019322933937234/share

 

CREDITS

🎙️ CREDITS

🎶 Theme music by Skilsel on Pixabay: pixabay.com

 

TRANSCRIPT


Mark

Hello and welcome to episode 60 of Neuroshambles. Thanks again for joining me, Neuroshamblers. It is always a pleasure to be able to commandeer a window of your precious time. Now, before we crack on with this episode, I just wanted to remind you to sign up for my mailing list if you're that way inclined. I'm sure you get loads of emails, but I promise not to spam your inbox. Cause frankly, I do not have the energy. I would, however, love to keep you up to date on some of the exciting stuff I'm currently working on when I'm ready to announce it. So, if you can sign up to my mailing list, I will send you a free PDF of all the what the flip moments that have appeared in Neuroshambles so far. One listener who already received hers responded with an email to say, Thanks so much for this, Mark. My daughter and I have just been in stitches reading some of Jay's gems. which fills me with joy that there is a family of neurodivergents somewhere sitting around breakfast listening to absolute nonsense Anyway, I'll put a link to the mailing list in the show notes so you can sign up and grab your copy. Apart from that, I have another cracking episode lined up for you this week on a topic requested by loads of you, so let's wade into it.

 

SECTION INTRO

Meet the guest.

 

Mark

Now, because of the topic of this week's episode, I really wanted to get on a guest who actually knows their stuff. Because to be honest, I have not got a clue about this one. So I'm really looking for advice. And I also know that it's a subject that a lot of neuroshamblers are going to want advice on. So, I did some research to find someone that fits the bill. And when I reached out to them, it turned out they're already in Urish Ambules this nut, which is amazing. I was over the moon to find that out. It's like, great, I don't have to explain what this is, you already know. Come on and chat to me. Now, not only is she a parent of neurodivergent children, but she's also a former nurse and a qualified pediatric sleep consultant who specializes in helping families of autistic ADHD and PDA kids. So, I am absolutely delighted to be able to welcome her aboard. It's Michelle Cyril. How are you doing, Michelle?

 

Michelle

Yeah, good. Thank you. Really pleased to be on a podcast I actually listen to.

 

Mark

I know, amazing.

 

Michelle

Great.

 

Mark

So yeah, really pleased that you agreed to come on and talk to me about this topic of the week. But before we launch into it, it's always useful to know what your setup is, what are the neurodivergencies at play in your household. So What have you got for us, Michelle?

 

Michelle

Okay, so I've got neurodivergent twins who are 10, a boy and a girl. I've got one who is. A diagnosed autistic with PDA and ADHD traits.

 

Mark

Okay.

 

Michelle

And then I have got one who is due to be assessed shortly. And I would say they have autism, PDA and ADHD traits too. But their autism profile and their PDA profile are quite different and I feel like I need a different skill set for both of them.

 

Mark

Yeah, yeah, this is the thing, isn't it? My kids are all diagnosed with the same thing, but their the management strategies for each of them is totally different. Yes.

 

Michelle

It really is very different.

 

Mark

Okay, well, thanks for introducing us to your setup, Michelle. Yeah, there's lots and lots to cover here, and I'm sure people are eager for advice on this particular subject. So let's get into it.

 

SECTION INTRO

What's the topic of the week?

 

Mark

So, this week's topic of the week is one that I've been wanting to tackle for a long time because I know that it's something that a lot of parents of neurodivergent kids struggle with, and that is How the hell do we manage to get our kids to sleep at a reasonable hour? And for bonus points, how can we keep them asleep and stop them from waking up at stupid o'clock in the morning? That's it in a nutshell, really, for me. Now, I put a call out on the socials to see if any listeners had any questions for our guests, and unsurprisingly. quite a lot of responses. Because there were so many, I've decided to group them into common themes rather than answering any people individually. But hopefully we're going to cover most of the things that were raised on the socials and If you didn't mention anything on the socials, we're probably going to cover a lot of what you were thinking about anyway. So, I think, firstly, we should probably start by acknowledging. All kids disrupt parents' sleep. You know, it's just a thing that kids do from when they're born. They absolutely vandalize your sleep pattern. Batter you into submission, and you know, that is universal for all parents of children So when we kind of focus on neurodivergent kids at this point, we're not suggesting that parents of neurotypical kids have an easy time of it. It's obviously difficult in the early years, but with neurotypical kids, it does tend to settle down as they get older. So I think general research suggests that typically kids will grow out of sleep resistance, we'll call it, I guess, to describe the absolute carnage that happens at at bedtimes. But they typically grow out of sleep resistance between six to eight. Is that fair to say?

 

Michelle

No, roughly. It's like is It's never an exact science, but usually things start to settle down like once the child is able to usually fall asleep. independently and then they're not then it's still expecting their parent to maybe be with them during the night, then they tend to stop waking. But you're right, that like lots and lots of neurotypical children will Still have sleep disturbance, but it percentage-wise it's much lower. So, those parents are only like 25 to 40% of neurotypical parents are having sleep problems and challenges with their child. Whereas up to eighty percent of autistic children, that's what the latest data is saying, up to eighty percent of autistic children struggle with sleep. So like this far reaching.

 

Mark

That's why parents of neurodivergent kids look so knackered all the time. Like, yeah, it's like a look. There's a common look that we all have, this sort of thousand yard stare.

 

Michelle

Yeah, School Run, you can spot us on the school run.

 

Mark

Yeah, yeah, yeah, absolutely. Like huddled over their coffee, twitching. So regardless of the timeline of how old they are when they start to be a bit more comfortable with sleep, at some point it seems that neurotypical kids will settle down, as you say. So it does seem to be a developmental phase that humans grow out of at some point.

 

Michelle

Yeah, but there are I mean there are things you can do when a child is younger to try and help them fall asleep more easily and sleep through the night and it's not a... Because you can have some children who just sleep very well from the get-go and they never have a problem with their sleep. But in terms of what they're saying with that the primary school age That's when my child's sleep my children's sleep issues started to show up again. Like my son was like struggling to sleep a lot when he was tiny, like the first three and a half years of His life was really, really challenging. Sleepwise, I was waking between six and eight times a night. Yeah, it was hard. And then that's what got me interested in sleep. And then I qualified in advanced period sleep. I solved his sleep for a few years and then around the age of seven, so when things should be kind of getting into more of a normal sleep pattern, that's when but the struggles at bedtime started to show up. So it's like my experience doesn't fit with what the the research suggests.

 

Mark

Yeah, yeah, yeah. So, and I think that's common of a lot of parents of neurodivergent kids is just as you're expecting those battles at night time to taper off sometimes they can even ramp up but it's definitely you know I think that issues with sleep can carry on into adolescence. And as a number of listeners commented, it's still a problem in adulthood.

 

Michelle

Yeah, it can be really challenging. But I'll be speaking to people who will say, like, from day one, their child has had sleep problems and they're now 10, or they're now 12, or they're 14, and like, they have never slept well. So this is like. Chronically sleep deprived adults and children.

 

Mark

Yeah, it definitely happens to a lot of adults. And what was one of my favorite comments was someone saying, why can't my ADHD brain just SHUT UP? In capitals. It's like I'm sure we'll get onto that. So you it's interesting that you were saying that you had very difficult experiences of getting your Was it just your boy? Was it the the both of them?

 

Michelle

Yeah, so I was so what was interesting was I was doing obviously they're twins, I'm doing the same thing for both of them. And my daughter slept amazingly. My son just did not sleep. He was the  classic kind of short napper. waking six to eight times a night. He'd like crash out to sleep and wake early, wake her early. And so we stopped room sharing. The twins stopped room sharing uh early on 'cause they would wake each other at four AM. So, yeah, he he w he really struggled with sleep.

 

Mark

But the other one was totally fine. Just, you know, we're obviously we're not being woken up. It was totally fine. So that's interesting. And What I like is that this triggered you to do shitloads of research into sleep. Right? Even though you're sleep deprived, you're like looking through these books, going, there must be an answer. There must be something.

 

Michelle

And that, like, the twin books were telling me, like, you should keep their sleep cycles on track. Wake them when the other one wakes. Was like, now I'm making my daughter sleep deprived because She's not the short napper he is. And so, yeah, I did a lot of research and sleep.

 

Mark

So, you then got a qualification in it. Because you were like, Well, I might as well get a certificate. I know it all now.

 

Michelle

Well, I'm a children's nurse, and I can go and do a bit more training and take this a little bit further.

 

Mark

This was before you knew they were neurodivergent. So, you're sort of presumably looking at strategies that work for neurotypical kids, and you were saying that actually that did kind of work early on.

 

Michelle

To start with, yeah, it did work early on. But I would say he would still wake, but he was able to settle himself as things went on. But, you know, he was a night screamer. He'd go from like Fast asleep to like full-on screaming between six and eight times a night. So, like, my nervous system was shot every day from Constantly being like woken up to screaming.

 

Mark

Yeah, that is not a nice way of being woken up. In fact, I'd go so far as to say it's probably the worst way of being woken up is your child screaming.

 

Michelle

Yeah. So so sorted his sleep. Yeah, he was a good sleeper for a couple of years. And then after that, that's when like bedtime battle started, teeth brushing started being refused, bathing and showering.

 

Mark

Yeah, we'll get we'll get onto all of all of these because I... So what I've done is I've broken up bedtime into four separate segments, and we're going to tackle each one individually. The first segment is like the bedtime routine, going to bed. Then there's getting to sleep, then there's staying asleep, and then there's waking up.

 

Michelle

Yeah.

 

Mark

So I thought it'd be useful to break it down because I would wager that most parents in neurodivergent kids have issues with at least one of those four things with their kids.

 

Michelle

Yeah. And I would say the most the one I speak to parents about most frequently is getting to sleep. It's usually the biggest challenge falling asleep. But what I found was that everything I knew as a sleep consultant wasn't working for my neurodivergent children.

 

Mark

Right, yes. Because you were following a different rule book, right?

 

Michelle

Yeah, I was following yeah, I knew what bedtime should look like. I'm a sleep consultant, I know what's going on, but I just couldn't help them. And it wasn't until I reached out for some support from a neurodiversity consultant who taught me kind of the neuroaffirming approach. Okay. That things began to shift. So then I was able to combine my kind of expertise in sleep and evidence-based practice with a neuroaffirming approach. And that's when things began to shift. That's when the magic happened. And I was supporting their nerve systems in a different way.

 

Mark

Before we start looking at the specific neurodivergence side of things, it's quite worth looking at the traditional advice on why that doesn't necessarily work.

 

Michelle

Sure.

 

Mark

Because. When you confide in other parents that you're having difficulties getting your kids to sleep, everyone's got an opinion, haven't they? Everyone wants to tell you what to do, and they'll give you all sorts of advice, but it's typically there's a number of different things, and there are also questions that are really annoying. Things like, have you tried a routine? Have you tried a bedtime... Of course I fucking have. It was the first thing I did. Yeah, did you have that?

 

Michelle

Oh, yeah, yeah, yeah. Do they have a bath every night? It's like the the bath is the magic thing. I can't even get them in the bath.

 

Mark

That's the problem.

 

Michelle

Yes.

 

Mark

Oh, yeah, okay. There's that one. Another one you get is that you should confiscate screens half an hour before bedtime.

 

Michelle

Oh, yeah.

 

Mark

Yeah, because that screens are the kind of the inherent evil there. We can look at that as we get onto this. The other one is You should just tell them to go to sleep. Just tell them to go to bed.

 

Michelle

It's like yeah, like it's that easy. Like, yeah, I've told them just go to sleep, but they can't switch their brain off.

 

Mark

They're literally kids that go, oh, yeah, fair enough.

 

Michelle

All right then.

 

Mark

Yeah.

 

Michelle

I wish you told me earlier. Go to sleep.

 

Mark

Yeah, there's that one, you know, or just lock them in their room. I've heard that before as well. That's proper old school. Boomer parents have no I don't think we'll be doing that. Thank you, Maud. Um and the other one is uh have you tried reward charts if they stay in their room?

 

Michelle

Oh, yes. I mean, that's not an old school one. That is one that people really still talk about so much.

 

Mark

Really?

 

Michelle

Oh, it's so frustrating. Like, how many reward charts can a neurodivergent child have when people. find it doesn't work.

 

Mark

It's just sad, isn't it? I've like I've had reward charts and they just sit on the wall defiantly unstickered. You know, you just like do you come down and go, oh, it's just a little totem to my failure to parent.

 

Michelle

Yeah. The sticker chart's never gonna work. Like if you've got a child with a vulnerable nervous system, they want to feel safe at night. They're not gonna wait for a reward that comes the next day or two days' time. It's like and it's a sticker, like they'd much rather have you than a sticker.

 

Mark

Yeah, absolutely. So it's fair to say that none of this advice really works.

 

Michelle

No.

 

Mark

So Let's have a look at at why. So let's look firstly at the going to bed side of things. That's where we've sort of touched on the fact that there's very often reluctance there. I think there's a lot of issues at play with bedtime routines for neurodivergent kids that aren't present for neurotypical kids.

 

Michelle

Yeah.

 

Mark

Depending on their different makeup as well, you know, the different blend of traits that they have.

 

Michelle

Yeah. So, first of all, like the bedtime routine. Well, frankly, it's quite boring. So, yeah, we've got children who are seeking dopamine all of the time and a bedtime routine is just so boring. So like the transition, like if maybe they're doing something fun, getting them to turn off The screen where they've got a huge dopamine hit to then go and do something super boring, like clean your teeth, get in your pajamas.

 

Mark

I've done this all before, and I didn't like it the first 18 times. Yeah, totally. And so there's that transition. And as, yeah, that's interesting. Okay, so from my part, I don't really have that reluctance from my kids to go to bed. Mainly because it's fucking crazy what happens. I didn't realize that I was doing the right thing. I just did a thing. But that's probably why I'm not having those issues so much. I have very specific bedtime routines now with Otto and India. Jay will largely be absent from this whole conversation about sleep, just for the record. because he tends to sort of put himself to bed. We don't tell him, you know, he we've agreed that ten o'clock is reasonable time for him to go to bed, and he adheres to that. So it's an agreed thing. I don't have to enforce it. I know that he does it. So largely, there's not really been a battle with Jay. Otto and India have different. foibles which we'll get into. But the bedtime routine isn't so much a big one because of the The ridiculousness of it. And I think I might have covered this on another episode, but it's very pertinent to this one. So if you haven't heard that, strap in. So for India, what tends to happen is that when she brushes her teeth. She will broadly brush her teeth. There's always a battle there. PDA is going to PDA, right? There's always a battle. And I try and frame it in different ways. But largely, I found the trick is not to give a shit if she cleans her teeth or not. So it's your mouth, you know, it's your mouth that's going to rot, not mine. Anyway, that aside, what will happen is When she's got her pajamas on, I will suddenly start a countdown from five. And she knows that she's got five seconds to get upstairs and into my bed. And then we have this routine, right? Where I will chase her up the stairs. So this is dopamine. This is pure dopamine.

 

Michelle

Right, yeah, a huge dopamine hit going on here. It's lovely.

 

Mark

I will chase her up the stairs, like trying to grab at her, but obviously not. I mean, I could catch her, but I don't. You know, there's that fear. I do that, then she'll launch herself onto my bed and grab both of the pillows. Now, I'm going to read the bedtime story, so I need a pillow to prop my head up, so it's very important that I get a pillow. She'll grab both of them, and then I try and wrestle one out of her hands, which generally involves me yanking her about on the bed. So she's flying all over the place and trying to hold on to it. Eventually I get a pillow off her and then I smash her about the head and legs with the pillow

 

Michelle

Brilliant.

 

Mark

Then I lie down, and she spends the whole of the bedtime story trying to climb underneath my legs, which are flat on the bed. And there's that, right? That is that's before the story starts. Then the story starts, and when I read a story, I sort of enact it. I enact it physically while I'm telling the story. So if the character walks up a hill, I'll be walking my feet on her back. Up her back. Or if they slam a door, I will slam my legs onto her back. And she loves that. It keeps her interested. I have fun. What usually happens then once it's finished God, it sounds so insane. Seriously, I hope social services I hope social services don't hear this. So what I do then when we finish? Is that I kick her off the bed off the end of the bed? Right, bedtime now, and I kick her off the bed. She tries to stay on it. So it's very physical And it's very it's interesting, right? It's not boring. And then she will go to bed and she will lie there and That's it. That's the bedtime routine done. She's in bed. I've won. Right?

 

Michelle

Yeah.

 

Mark

This is every single night, though. It is, yes. It's a lot of effort. I won't always have the energy to do it, but that's what I do. With Otto, I do something similar. but I do what I call a mauling, which is again very physical, where I pretend to be a bear and I smash him on the back Mauling him like a bear and sniffing his ear like pretending that I'm a bear trying to get into a honeypot That's largely what that is. Then I'll do the bedtime story. Very similar, quite physical with him, which he loves and he insists on doing it. So, we were doing a story about the jungle the other day.

 

Michelle

Yeah.

 

Mark

And a coconut fell out of the tree. So, obviously, I. Then bashed him on the head, coconut land on his head. You know, that kind of thing. If he uses a machete, then I use a machete on his back. I chop his back. You know, again, to an impartial observer. might appear to me that I'm abusing my kids. But they are laughing all the time, so I think it's fun.

 

Michelle

Yeah, yeah.

 

Mark

So that's what they do. Have I accidentally got it right?

 

Michelle

You have, because what you're doing there is so much amazing stuff. Like you're doing you're meeting their sensory needs by like chucking them about. So pushing your legs up and down on them, like you're meeting their sensory needs in bed before going to bed, which means they're not likely to fidget around so much in bed 'cause they've been You know, meeting them.

 

Mark

They've had a good mauling, Michelle.

 

Michelle

Yeah, they had a good mauling. And it and whilst you do it slightly different, you know, each night because maybe the story's different, what you're doing is predictable. So what they love. Neurodivergent children love predictability, but they don't want predictability to be boring. So like you're You're throwing in so much dopamine there. The transition to bedtime is fun because, like, you're chasing her up the stairs, and they're laughing, you're laughing, so their parasympathetic nervous system. is like disengaging their fight or flight response, and it's exactly what you want at bedtime. You want a nervous system that's super settled. Like that is just like Classic, brilliant. But you've got to have the energy for.

 

Mark

Yeah, yeah, yeah, no, absolutely. And it's not, I don't always have the energy, so sometimes it's half arsed. That is one of my favorite times of the day. Like, it's one of my favorite things to do with my kids. However, if you were to look at any parenting advice for neurotypicals. It's all about be calm and bring them down. It's like, I'm like, that is the opposite of what I do. Which I guess works for neurotypicals. So why is it a different thing for neurodivergents then? Why is that approach rather than the calm approach?

 

Michelle

When you do quiet time, they're not meeting their sensory needs. It's probably not going to be as fun unless they're like hyper-focused in it. Like quiet time could involve like Lego building, but with Lego, like they're super in control. it's predictable, like that's a great thing, but to take them away from that quiet time hyper focus is going to be a really hard transition for them. But you can do that before, but like meeting the sensory needs, getting the laughter happening is going to be so much better than quiet time for a neurodivergent

 

Mark

Right, and I guess the fear is for many parents that you're ramping them up and then they're going to be too excited and then they won't possibly be able to go to sleep.

 

Michelle

That is a lot of people's fear. They're when they say to me, like when I'm working with them one to one, they're like going Well, isn't that not going to excite them and make it much harder for them to fall asleep? And I was like, no, you just give it a try.

 

Mark

Yeah, they'll be knackered. It'll be fine. You'll all fall asleep by the end of it. It's exhausting.

 

Michelle

But also like so many parents I support, like you saying like you love bedtime, it's one of your favourite parts of the day. But like so many parents and neurodivergent children Right. There's no joy in bedtime. They hate bedtime. It's like a really physically intense time and it's like really horrible. So trying to bring joy back into bedtime is one of one of the things I really want to do for families because it should be a nice time and they've just had so many years of it being horrific, wrangling their child into bed and just exhausted. So yeah, it's we want more fun at bedtime.

 

Mark

I'm aware that I am an anomaly, I think, in that You know, my experience is very different from a lot of people's experiences. And, you know, I'm sure that a lot of people are listening that day and just going, oh, you just can't. Yeah, just annoyed at the fact that I enjoy it. But the thing is I don't know how it evolved. Do you know what I mean? Like I don't know you don't I didn't suddenly one day just start counting down for five and then d you know, do and I didn't suddenly start mauling Otto 'cause he'd be absolutely Appalled by it. You're like, what the fuck are you doing? Daddy's lost it. So I don't know how you introduce that first. But I guess just be open to the possibilities. I don't know.

 

Michelle

Yeah, yeah. Well, there's something we do in our house, which is called a mummy press, like where you say like I hope social services don't like don't listen to this. My daughter will say she wants a mummy press. And what that means is she wants me to lay on her in bed. So she's like laying on her front in a star position and I literally lay My body just goes on top of her.

 

Mark

Yeah.

 

Michelle

And then she's like, enough, and I have to get off.

 

Mark

You've got a safe word? I love it. But it's interesting that you're saying that it's the sensory, the sensory input at that. at the end of the day is something that's good that's really important to them and will help them kind of get through that transition. So that's just transitions for bedtime routine But obviously, one of the other issues of bedtime routines is when you look at PDA kids, is the demand. You know, there's that as well. And that is another nuance. So if you have a child who's PDA, if you're not familiar with PDA, I don't I presume most people are now pathological demand avoidance or pervasive drive for autonomy or persistent drive for autonomy or however you want to term it, but a demand is seen as a threat to their nervous system, it triggers their survival instinct and they will instinctively typically say no or try and avoid the thing that that demand is asking of them. And sleep. Sleep is an internal demand, isn't it?

 

Michelle

Yeah, it is. And lots of neurodivergent children like don't like the feeling of falling asleep. So that means if they close their eyes, they might fall asleep. So then they're like desperately trying to keep their eyes open because that is an internal demand. Yeah.

 

Mark

So how do you how do you raise that with PDA kids? So again again with with Jay I just don't tell him to go to bed. He's because he gets it, right? So I don't have that battle. He we broadly have agreed at some point in history on a on a rough bedtime And he'll do it because I think he recognises that he feels better if he has that amount of sleep. That's quite rare, I think. Whereas with India. we've got this old rigmarole going on. So that sort of bypasses that. But but what would you recommend for PDA kids to help ease that feeling of demand?

 

Michelle

Yeah. So I think what first off, we need to recognize how demand loaded and how stacked the demands really get on the run up to bedtime. So like let's just list a few out. So you've got to they've got to stop what they're doing. Maybe they've got to turn the screen off. Then they've got to go upstairs and then they've maybe got to use the toilet. And then got to flush the toilet. Then they've got to get in the Bath, or got to get in the shower, but before that, they've got to get undressed. Maybe they've got to clean their teeth and rinse that all down the sink, and then got to take their clothes off and put them in a washing bin. And then they've got to get out of the shower and put on their PJs and then they all get into bed and they've got it's just stamped.

 

Mark

There's like a deadline to it as well, because it's like you need to get to bed. It's like

 

Michelle

Yeah, people are like rushing them and if you're rushing a rushing a neurodivergent child is like the thief of control and they just really want control and the bedtime is a time where You've got so many demands, they don't feel in control, they're often being rushed, they're noticing like your nervous system is like, ah, so they feed off us. And Yeah, it it all falls apart. So, like, for my son, like, we would just ha he would literally lose the function of his legs outside the bathroom. Like, he would literally just melt on the floor. He just couldn't. Like, he shut his body literally shut down.

 

Mark

So, what? Did you have to carry him, or was he just like crawling along the hallway?

 

Michelle

No, I'd often just wait. I'd I'd wait. And I was like, okay, well, bath time's not happening tonight. Teethbrushing's not happening tonight. Here, I'll bring you your pajamas. Or let's just go to sleep in pants tonight, you know, whatever.

 

Mark

Yeah, yeah, yeah. So you just improvised it.

 

Michelle

Yeah, you j just you made it up as I went along, but then then once I started using the neuroaffirming approach, that's when things changed and I started to spread the demands out. what we do in our house is we well, first of all, we like we limit the expectation around how dirty are you? How often do you actually need to wash? Like

 

Mark

Yeah.

 

Michelle

Do you need to wash every night?

 

Mark

Oh, I mean, I'll level with you. They're very rarely clean. My kids.

 

Michelle

Like, washing rarely happens. So it's like, oh, I think your hair's stinking now. I think you need to go wash it.

 

Mark

Yeah. So it's reducing the it's it's removing some of those demands that aren't imperative, you know. Yeah, yeah, yeah, okay.

 

Michelle

And then or the ones that you want to like you can put pajamas on after they finish their dinner or they can brush their teeth as soon as you've like finished maybe clearing up after dinner, you can grab a toothbrush, stick it on the kitchen table and just say, like, I've put your toothbrush on the table I'm not asking them to brush their teeth. I'm just telling them the toothbrush is secret to Eddie Logan. Oh, look, there's a toothbrush. Yeah, it's there.

 

Mark

Interesting.

 

Michelle

You can choose what you do with that information. But yes. Spread.

 

Mark

Quite a good one from my kids. They put their pajamas when they're getting from school. Because they're already just like, Oh, I'm home So, and it also feels just a bit odd, you know, a bit other, a bit extra. So, they do it, and it's like, fine, they're already in their pajamas. And I'm not asking them, you're in comfortable clothes, right?

 

Michelle

Yeah. So like you that's a demand you've already spread. So what we want to do is just like really think about what needs to happen before bed and how can we spread it over the evening so it doesn't feel clustered before the demand of going to sleep and getting into bed.

 

Mark

Yeah, fine.

 

Michelle

And also like topping up their control cup is like I think about like a cup of like we want to keep putting in, putting in, putting in. So like with the toothbrushing It could be they get to choose what the toothbrush is they use. It could be you might have different toothpastes as an option. Do they clean their teeth sat on the kitchen worktop or do they use a bathroom? Or downstairs toilet, or you know, just let them have more control over the thing that's happening. So, I like To link, well, this is the thing that's happening, but they get to choose how it happens. If they want to stand on a kitchen chair and brush their teeth, then I guess go for it.

 

Mark

Oh, yeah, embrace it, embrace the madness. That's the thing I did with India the other day when she was. In a bit of meltdown, and was just not getting pajamas on. I didn't ask. I knew that there was going to be pushback, so I just went and got two... she sleeps in like my old T shirts. They're just massive T shirts. So I just got two of them out and I didn't even say anything. I just held them out And then she pointed at one. It's like, great, threw it at her. Literally. Because again, it's a bit fun.

 

Michelle

Yeah.

 

Mark

And then she got with it. Whereas if I'd have asked her, I would know that there would be.

 

Michelle

Pushback and there would be delay, and you know. yeah, but even that, you know, you're giving the choice there, like which, you know, without saying which one, she knows she's got choice, but if you just come with one. She'd have felt she had no control, no choice, because you were only giving her the one. So you might have had more pushback.

 

Mark

I think not speaking was key there as well. I think because she's in meltdown, India can't take on much more information. So if I speak, she's going to have to process that and then she's going to have to make a decision. And yeah. So a lot of the time that yeah, I think speaking as little as possible, which is ironic from someone who has a podcast. So that's the bedtime routine tackled as one of the main issues. Probably the biggest one and the one we'll spend most time on is the going to sleep side of things. Because that is universally difficult, particularly for kids who have ADHD, I think. So Otto is a big one here. What so what what about your kids? Do they have issues with their busy brain going Sort of calming down at the end of the day.

 

Michelle

Yeah, so one does. So, my son, he can struggle to switch off his busy brain. He needs to listen to something to fall asleep. So, with him being on. residential on school at the moment tonight. I'm like, oh, how's he going to cope with his busy brain? 'Cause he's not going to have anything to help him shut it off. For him it has to well, I recommend this for other people as well, it needs to be a familiar story. So if he ever if he ever wants me to download a book that he hasn't heard before, I know that's going to be much harder for him to fall asleep because He's going to want to know what happens next week. Whereas when it's a really familiar book, I know Harry Potter, something like that. He knows what's coming. He he can just relax and listen to it and yeah.

 

Mark

Yeah. So the Otto has exactly the same thing with the podcast. The podcast that we listen to is Greaking Out, which I mentioned previously, which is great, a National Geographic podcast. And he knows all the stories because there aren't that many episodes. There's like three seasons or whatever. He's heard them all a hundred times, but he doesn't get bored of them because it's not about listening to the story, is it? I've sort of read recently that neurodivergent brains are they're just hypersensitive to sensory stuff anyway, if they're uh that you know, if that's one of the traits that is very prevalent to them. So if it's quiet It's not like they can't hear anything. It's like they hear everything. Do you know what I mean? That they hear everything going on in the background and they latch onto that. So if you've got this thing that is consistent and predictable. and recognizable, then you're not listening out for other stuff.

 

Michelle

It's really soothing, like listening to the same thing where you know what's going to come next. That's so soothing for a neurodivergent brain who's like trying to block out the unpredictable of the whole day. Like, if you can know, like, you're listening to a national geographic story and you know that Penguin's going to do something next, like, that is. It's just so predictable and so lovely for their brain. Also, you were saying about how an ADHD brain may, like, pick up on different sounds and, like, when it's quiet. So I think about, like for some neurodivergent children quiet is actually really painful like they hate it being quiet because they are they can't focus on any anything yeah and that's really really hard for some children yeah and that

 

Mark

The thing is then, when I go to bed, right, I am knackered. I am ready for sleep. So it doesn't take me long to get to sleep. But when Otto goes to bed His brain is still going. He's not, it's like his brain is not ready for sleep at that point. So it's no wonder he needs something else to distract him. that he finds it difficult. But he does have this thing where he like he really wants to sleep because he knows his body needs it, but his brain won't let him. So then he starts getting into his own head and worrying about the fact he's not going to sleep. So then panicking about the fact that if he doesn't sleep, he's going to be tired in the morning. and that's going to be really so then he just starts this anxiety loop starts going. Yeah. And I just really feel for him. It must be It's just really hard to be in Otto's brain.

 

Michelle

Yes. Really hard because he obviously wants to sleep, but he's not quite ready to sleep. What you said at the beginning of that was when you go to bed, you fall asleep quickly because you're going to bed when you feel tired. Whereas for many children, we put them to bed because the clock tells us

 

Mark

it's bedtime.

 

Michelle

But their body and their brain might not be quite ready for sleep at that point. So sometimes we're doing bedtime night. Neurodivergent children often, not always, often have a reduced sleep need compared to their neurotypical peers. So we're often doing bedtime that is age appropriate, but doesn't necessarily match your own child's sleep needs.

 

Mark

Not brain appropriate.

 

Michelle

Yeah, yeah, not brain appropriate.

 

Mark

Yeah, so I know that a lot of parents to resolve the battles around bedtime, just sort of don't you know, uh the habit later and later.

 

Michelle

Yeah.

 

Mark

Which is one option and is one answer, but it obviously then has a knock on effect. And I think I think some people feel guilty that they're being negligent or something because their child isn't getting enough sleep. But you're saying that actually some brains just don't need it as much sleep, and that's just as yeah, so it's about trying to work out what does your child need.

 

Michelle

So I often talk about a sleep window, like it how much sleep does your child need to show up as their best version of themselves the next day. And that might be less than what an older sibling needs And it might be less than what their friend up the road's having. But it's like think about your own child. How much sleep do they need to be well regulated the next day, to like tolerate their siblings, to wake up and kind of get going more easily.

 

Mark

And I don't think there's enough sleep in the world that'll help Jay tolerate his siblings.

 

Michelle

Well, I think there's obviously the what's going on in terms of the neurodivergence as well. But but like when they have had a good sleep, it's probably easier for him to tolerate them than when he hasn't.

 

Mark

Yeah, no, absolutely. So one of the things you're saying there is to sort of let go of that expectation that at ten they will go to bed at whatever time is deemed reasonable? And just take it by what your child is telling you.

 

Michelle

Yeah. So, what you're looking for is your child to be able to, your neurodivergent child to be able to get into bed and fall asleep within half an hour. Because if you've got a really busy brain, taking up to half an hour to switch it off is considered normal, whereas a neurotypical child, we would expect them to fall asleep within fifteen minutes. So allowing double the amount of time to switch off that busy brain. But if your child's taking longer than half an hour to fall asleep, then we need to think about helping them because that bed has probably become a really Difficult place for them. It's a place of struggle. It's a place where they're just like, I just can't fall asleep. And it's really annoying them. So it's almost like we need to retrain their brain into thinking I can get into bed and fall asleep quickly. So sometimes we need to push bedtime right back, help them get into bed and fall asleep quickly, and then we can start bringing bedtime earlier again because we've Retrain their brain with help them learn they can do it and they don't have to stick with a late bedtime. So you just slowly give them more opportunity to sleep.

 

Mark

Yeah, okay. One of the things I think with Otto, when he gets into his own head and he gets really anxious about it, is I tell him I don't want him to go to sleep Because he gets stressed about the thought of going to sleep, that there's this objective and he's failing to meet this objective. It's like, I don't want you to go to sleep right now. You just need to relax, right? That's all you need to do. You're not trying to get to sleep, you're just trying to calm down. And once that sort of removed that end goal. He tends to relax and he tends to be asleep much, much quicker than if he's going, I need to sleep, I've got to get to sleep, I'm trying to get to sleep, and he's just going in his head. Yeah, that's just something That I th find works for Otto

 

Michelle

Yeah, and the act of falling asleep can be a huge demand in itself, and especially if a child is child knows they've got a parent waiting for them to fall asleep Then that can make it even harder because I need to fall asleep, which feels like a demand. They want to go and do something else, which then feels like a demand. I've got to do this more quickly because they're waiting for me. And what you're doing there by saying, I don't want you to fall asleep, is like you've just taken away that demand completely, and you're focusing on relaxation. And when a child is relaxed, feels safe, feels relaxed. I talk about sleep being a ninja. Like, sleep just creeps up on you. It just comes. It's like a nice ninja.

 

Mark

I'm not going to tell Otto there's a sleep ninja waiting for him, though. That is... he'll never sleep again, Michelle. There are also other things that that make it really hard for all of my kids to sleep. If it's too hot That is a massive thing. Like, they really, like, all of them just universally are an absolute nightmare if it's too hot, just as it has been. recently, they all have to have fans like on them, like they're in a Bonnie Tyler video or something.

 

Michelle

So, new and divergent children often run hot. So, that's something I quite often find that children will sleep like half hanging down the crack between the the wall and the bed because they're like throwing themselves against the wall to try and get the coldness of the wall. Yeah. Their bed's too hot. So, you know, like Dogs in the summer have those like self-cooling pet gel mats that just go on the floor.

 

Mark

Yeah.

 

Michelle

We've got one in my daughter's bed.

 

Mark

Oh, that's amazing. What a great idea.

 

Michelle

It's quite heavy as well, so sometimes she likes to have it on top of her rather than underneath her.

 

Mark

That's nice.

 

Michelle

She has it on like well, she's got a small double bed. She's got it on like the edge of the bed, so then When that's warmed up, she can roll over and get the other cold bed and then roll back, and she's got it all sussed.

 

Mark

So another thing I think is like similar to that is pillows as well. So Otto obsesses about the pillow being too warm. So he has to get up and flip it over because then it's it's cooler. And he constantly does that. Again, he's just like, dude, just Just go to sleep. But but it's a sensory thing. It's it's all it's all to do with this sensory... God, it must be Just a sensory playground for them at bedtime. It's hard.

 

Michelle

It's just, it's so, this is like why it's so hard for neurodivergent children to fall asleep compared to neurotypical children. Like, there's. It's multifactorial. It's just amazing they get to sleep at all.

 

Mark

Absolutely. Now, when it comes to obviously getting our neurodivergent kids To sleep. One of the theories that I think there's a lot of scientific evidence for is that our kids don't naturally produce melatonin in the quantities that neurotypical kids do. which means that they're lacking in it, which means they find it more difficult to get to sleep. But if you take melatonin tablets to kind of boost your melatonin levels, that can have a beneficial effect on neurodivergent kids. Now this was the question we got the most listeners writing in about, um, because any parent of neurodivergent kids whose kids are going through difficulties with sleep will have at least looked at it, if not tried it or tried to get hold of it. So let's dive into the melatonin issue, Michelle. Firstly, for the listeners, could you just kind of break down a little bit what melatonin is?

 

Michelle

Okay. So melatonin is a sleep hormone that triggers drowsiness and helps us fall asleep more quickly. And our bodies produce it. Our there's a gland in our brain that produces it and our gut produces it as well. And yes, as you said earlier, like some neurodivergent children don't produce as much of it as others. We don't know why that is, but it can be reflective of why some neurodivergent children struggle to get to sleep. And how we produce melatonin changes as we grow up. And in children young children, it's It's like it melatonin starts to rise in the evening around seven o'clock at night. Adults and it's around nine o'clock at night. But teenagers start producing it even later, which is why they often find it even more hard to fall asleep and you get into a bit of a battle where they should be in bed, but their body's telling them they're not Tired. Right. So it can lead to falling asleep issues in adolescents, but we don't know why that happens.

 

Mark

Right. Okay. So one of the options that you have then is to give it a boost, right? Give it a bit of help, get some melatonin in their system, usually in the form of a tablet So for the record, my kids have all been prescribed melatonin because of the sleep issues they had You know, all of them. I mean, Jay, early on, he doesn't take it now. I don't think he needs it now, but early on, he found it quite difficult to get to sleep. Otto and India both. Take it. So we've had it prescribed by our GP. I know not all GPs describe melatonin. I spoke to Dr. Lucy Pocock about this, who's a GP earlier on in this season and Melatonin's on her red list. So she's not allowed to prescribe it for whatever reason that is that's dictated from on high where she is. But we have it prescribed. And it definitely helps as part of our bedtime routine. It helps to just make them a bit more drowsy. It's not like we're drugging them. It's not but it does it does have a noticeable effect on calming them down and helping them to to s drop off to sleep more Quickly. Have you? Is that something you've had personal experience of, Michelle?

 

Michelle

So, my children don't have melatonin, and it's...  I'm not anti-medication, and just I only want the children I'm supporting to have melatonin if they really need it. And so there are some families who've come to me who say, I think I think we need melatonin, but then I managed to help them improve their child's sleep. So They don't need the melatonin. There's children who may be on melatonin and we can reduce their dose or get them off it. And there'll be a handful of children who I think actually melatonin be useful. And then I help them get hold of it through an independent prescribing pharmacist to do a trial of melatonin You said you don't know why GPs aren't allowed to prescribe it. Well, it's because there's an there is literally an international crisis over the use of melatonin.

 

Mark

Okay.

 

Michelle

It has been a bit demonized in the media, I would say, recently.

 

Mark

Yeah.

 

Michelle

But a stat I probably heard like last year. was one in four children in the US have used melatonin in the last four weeks. It just can't be that level of need. To use melatonin, but over there it's advertised on children's TV and you can pick it up at a petrol station. Whereas here, you've got to see a community pediatrician or hospital pediatrician to get it prescribed because As you say, it's red label for many GPs.

 

Mark

The process of getting it prescribed was a flipping nightmare. Yeah, it's hard. And it so yeah, I mean, Tam was sort of talking me through this recently of uh saying that We were referred to a sleep nurse at the sleep clinic with the local child development center. We had to fill out a sleep diary for each child for the month to prove that we weren't just making it up. We had to remove stimulation from their room. We had to move stuff out of their room.

 

Michelle

Yeah.

 

Mark

Remove the familiarity that they're trying to sleep with. Low light. sleep blankets, you know, all of the traditional sleep advice, just to prove that we're trying all those obvious things. And then we had to titrate on melatonin. And ev uh eventually once we had that, then melatonin was prescribed and then CAMHS told the doctor that they could prescribe it from now on. So that's what we do, and it helps. Not a pathway that everyone can use, but I just thought it might be useful for other people. But the fact you're saying there's an international crisis about it and there is a bit of controversy around it, maybe, must be coming from somewhere. And I might not want to know the answer to this, but I'm going to ask you, what what why is it contentious? Where's the contentious element to melatonin?

 

Michelle

Well, I think it's it's around the fact you've got so many children using it who potentially don't need to use it because we can help them. There are going to be so many children who could be helped to sleep and fall asleep more easily without melatonin if they're given the right support. And like people like me can help children fall asleep and then not go on and need a prescription ongoing, which we've got an NHS system that is breaking point and cost savings is happening everywhere. So it's an area where it's potentially being overused.

 

Mark

Right.

 

Michelle

But there are going to be some children who definitely, definitely need it, but potentially not as many that are receiving it.

 

Mark

So a lot a lot of the listeners have written in going... Please don't take my melatonin away from me. So a lot of listeners have written in to say their kids are on melatonin, but they sort of want to be reassured that the the long term effects of being on melatonin aren't a health impact on the child, right? So I understand that there's NHS impact and there's a prescription impact. And ideally, we wouldn't be prescribing medication unless all other avenues have been explored. Like I get that. But a lot of people want to have answers as to whether there's a health impact on our kids. Do you have much information about that?

 

Michelle

So I am guided by a sleep expert in Australia called Michael Gradazar, and he's done quite a lot of research recently about melatonin, blue light and like kind of what are the truths around it. And his view is melatonin is safe And pure melatonin in some cases is life saving. So if you've got a child who is really struggling to fall asleep, maybe they're falling asleep like well past midnight and It's impacting their life so much. We want to really preserve their mental health and that helping them solve their sleep. It's going to be life-saving for them. So, melatonin is safe. But if you want good melatonin, you need prescription grade melatonin.

 

Mark

The good shit.

 

Michelle

Exactly. You want to know what's in it.

 

Mark

Yeah. Not your street melatonin. Is that what you're saying? Someone comes up to you in a club.

 

Michelle

Gummies, for example.

 

Mark

Oh, okay, yeah. That's what you're saying.

 

Michelle

So many people are like, so you can have immediate release melatonin that comes as tablets and liquid, then you can have slow release melatonin that helps children stay asleep if they're waking. And then there are gummies. But the problem with gummies is you could maybe think you've bought four milligram gummies. Well, you could give your child one night a gummy and it's only got one milligram in. You could give them it a gummy the next night and it's got six milligrams in. There isn't the same regulation because it's classed as a food supplement. The regulations are just not. It's not as stringent as if it's medication. So, on some nights, you might be underdosing, some nights you might be overdosing, and then you've got other stuff going in there with them. So, really, the safest melatonin is going to be What's prescribed?

 

Mark

If you can get it prescribed, which depending on where you live in the country and depending on if you can go through the massive rigmarole of getting signed off by a sleep nurse at the local children's centre or whatever. the pathway is there. I also know of people who get melatonin from other areas. I'm not going to endorse that, but I'm certainly not going to criticize or judge anyone for doing that. You do what you have to do. But, you know, Neuroshamblers, if you want some. Just hit me up, right? That is a joke. That is a joke. By the way, I'm not peddling Neuroshambles branded melatonin, but I do need to monetize this podcast at some point, so who knows? Anyway, yeah, it's good to know that there isn't necessarily a health impact on melatonin. And I know that a lot of the advice is take it for a little bit. then give it a break and then come back on it again. Is that something you've heard?

 

Michelle

Okay, so we used to say have a melatonin break every school holiday.

 

Mark

Okay.

 

Michelle

But now some people will say, oh, I take it they take it during the week, but they have a break at a weekend. You don't need to do that. What we say now is have a melatonin break twice a year Because what you want to do is you want to make sure that the dose you're giving is effective and does it still be is it still needed? So earlier you said maybe Jay doesn't need it anymore. So, giving him a melatonin break for a week, you're going to help you work out. Well, actually, he's still falling asleep just after 10. He obviously doesn't need it anymore.

 

Mark

Jay decided he didn't need it, basically. He was like, Oh, no, I'm fine with it. So he doesn't use it. It's Otto and India.

 

Michelle

Yeah. and also sometimes people say We used to had melatonin, it was really effective for a few months and it stopped being effective. Sometimes if you come off it, you have a melatonin break and then you go back on it, it can start kind of kickstart it again and make it more effective. So that's always worth a try as well.

 

Mark

Okay.

 

Michelle

But I had, I was supported families. I worked for a company that Provides NHS sleep support, and I'd recommended this family have a melatonin break because they'd been on it for four years and never had a break. 'Cause no one had ever told them about breaks. And the mum sent a video of her child like rolling round her bed going like, This is torture, Michelle's torturing me How can she do this?

 

Mark

Literally naming you.

 

Michelle

They were only three days into the break, and she's like, What do I do? And I was like, Well. We've had our break and it's proved he still needs it, so put him back on it.

 

Mark

My God, that's like a smack head going cold turkey, isn't it? Yeah. It's like a scene from Trainspotting. Well, you know, yep, you've got your answer. Get him back on the melatonin. And yeah, so as you say, it's it's it's Definitely needed for some people.

 

Michelle

Yeah. Some people have heard that there are possible associations with delayed puberty and having melatonin. So it's a theoretical risk. Like we see it in like animal studies where puberty is delayed, but we've not seen it in any human studies. But what trick so the reason people are thinking about it is because you start producing less melatonin in adolescence and that kick starts puberty. And so if you're having melatonin every night Could it delay your puberty? But as I say, at the moment, it's looking like it's just a theoretical risk and it's not true.

 

Mark

Right. Okay. And for the record, it does work. Like melatonin does the job.

 

Michelle

But it doesn't work for everyone.

 

Mark

Really? Genuinely, it doesn't.

 

Michelle

Yeah.

 

Mark

Oh, man. I pity them.

 

Michelle

That's not what their child needs. So they've got, they've maybe waited two years for an appointment to get it, and they get it, and then it doesn't solve their sleep.

 

Mark

They're like, oh, God! For God's sake, I thought this was the magic bullet.

 

Michelle

Yeah.

 

Mark

Back to the drawing board. Back to the maulings.

 

Michelle

Yeah.

 

Mark

So once we've done the bedtime routine and our kids have got to sleep via whatever means listening to a podcast or like having fans blaring at them or taking shed load of melatonin or however it is that they get to sleep, they're asleep, right? Then you get the issue with a lot of neurodivergent kids, and I include mine in that number, specifically Otto. staying asleep is a huge problem. Now with Jay and India, once they're asleep, boom, they're out, they're fine, they don't rouse. Otto is an incredibly light sleeper, and he will wake up in the middle of the night, like wide awake. And I think that that's this is a separate issue to the other two. And I'm sure that you see people with these kind of issues. Do you experience that? at home as well.

 

Michelle

Yeah. Yeah. I don't experience that at home anymore, but uh so when my son was waking, he would wake for a very short periods of time and go back to sleep. Yeah, he'd wake up screaming, but then he'd go back to sleep really quickly. He had something what's called confusal arousals. But that's all gone now. But so we've never been in a place in my house with like prolonged waking, but there's certainly families I support where they can be awake for two, three hours a night.

 

Mark

Yeah, yeah. That and that's that's it with Otto. And that see I think with most parents of non neurodivergent kids Once your kids are asleep, they're asleep, right? It's just a thing. And I think a lot of neurodivergent depends on neurodivergent kids, that's also true. Job done. And then they'll be asleep to the morning, and I get an evening to myself. That's not the case really with me. So, um the thing with Otto is that when he wakes up in the middle of the night Because I think he's always woken up in the middle of the night. That's always been a thing, even from when he was a toddler. He would get up and he would be fully awake. You couldn't soothe him back to sleep. He'd be like, right, what's going on? He's like a meerkat. His head's up out of the cot, looking around. I'd be awake at that point because I'm a night owl, so I'd be watching something on TV and I'd just bring him down with me. And I remember some genuinely lovely moments where it's like one in the morning and me and Otto just hanging out downstairs, just pootling around. This was probably two or three... it was probably about three years old. You know, he's just hanging out with me for a little bit. And then, whatever it is that's woken him up, and whatever it is that means he can't get back to sleep, because I think that's the tricky thing. It's not the thing that's waking him up that's the issue. Issue because a lot of people can self-settle and just go, oh, okay, whatever that was, I'm going to go back to sleep. He can't get back to sleep again. And that's really rough because that's for him where his anxiety kicks in. So a lot of the problems with Otto Is that he doesn't have he doesn't I've just thought about this, I've just realized what it is live on Neuroshambles Light bulb moment.

 

Michelle

Light bulb moment.

 

Mark

He doesn't have his podcast, right? And it's the thing that's that he can focus on.

 

Michelle

Okay.

 

Mark

So he's there and he's just listening to the noises of the house and he gets really anxious about that. So then he'll be in tears and he'll come in to me and say, I heard footsteps or I heard the door creaking or I heard voices. Now, when he first said this, I was like, where? You know, like genuinely, like, terrified. I'm like storming through the house trying to find burglars. It's like, no, it's just his brain. Because he perceives noises as other things, but he's really affected by it. So I was going to ask you for some sort of. wisdom on that but I think just give him his podcast.

 

Michelle

You've answered it yourself. So I'll explain what's happening though. So We all wake up multiple times a night. We are doing an environment check and we're doing a body check. And his environment check is Whew, that thing's not playing as it was before. I don't feel as safe as when I fell asleep. I need something playing. And that's when, like, he's now list tuning into the sounds and things. He needs to remember. We are looking after and we've got lovely, amazing neurodivergent children who are constantly scanning for safety. And when he scans for safety in the night, that podcast isn't playing. So that could be a real easy fix to help him. But there might be other stuff going on.

 

Mark

I mean, there almost certainly is with with Otto in particular, because he's scanning for danger and he perceives everything, everything as danger. So, what will happen is that he'll be awake and he'll come into me. I'll have this little knock on the door and then he'll come in and he'll be in in tears and obviously, you know, he needs to sleep with me then which is his own problem, because he's still awake Right? When he's sleeping with me, it's not like he suddenly goes straight back to sleep. He's wriggling around. It's like, I really need to sleep, Otto. Can you just you know, decide which side of the pillow you're gonna sleep on and just stick to it. For God's sake.

 

Michelle

I always say sharing a bed with a neurodivergent Child is like sleeping in bed with an octopus looking for their keys, it is impossible. It's true.

 

Mark

Oh, because it's not, oh, it's the wriggling, but also the noises as well, you know, the sighs. And the you know, like, I love Otto so much, but he's not a good person to sleep with. It's really hard. But I can't, do you know what I mean? I can't go to your own bed because he's here for a reason. He's anxious. There's no way he's just going to go back to sleep. And I know that if I send him to his own bed, he will stay awake for hours. He's been known to do that before. You know, like I'll go and check on him a few hours later and he'll still be just like lying in bed awake. And I really feel for him because he wants to get to sleep, as we said earlier. So having a podcast in the background would help. Is there anything else?

 

Michelle

So I mean, you there's also looking at how much sleep does he need across the whole week? And it may be that we need to start reducing the amount of time that we're giving him to sleep because he's almost like developed holes. It's a bit like pizza dough. Like if you imagine your sleep is pizza dough, when you're making a pizza, you're stretching it out. You've got too thin, you've got holes in your pizza. No one wants a holy pizza. So we no one wants holes in their sleep. So sometimes we need to compress sleep to get good blocks of sleep, and then we start stretching it out again, but not too far that we get holes

 

Mark

Right. Okay. So if he went to bed later, then the theory is that he would sleep more consistently through.

 

Michelle

So you just slowly start compressing bedtime until you start getting a whole block of sleep.

 

Mark

Okay, that's an interesting approach.

 

Michelle

And then you start stretching it out again.

 

Mark

Really? Does that work? Tell me the logic of that

 

Michelle

you compress it because you want to get a whole block of sleep. Once you've got your whole block of sleep, you start to stretch out again. But at some point, the holes are going to start developing. So then you know where you need to go back to.

 

Mark

Okay, that's interesting. Only usually with him, with Otto. I'm talking about Otto, but I'm sure other people have children with anxiety who wake up in this way. If there's something else going on that he's concerned about, it becomes a bigger problem. And I think it's partly, and I I'm now sort of starting to piece it together. Like, he wakes up in the middle of the night, there's nothing else to listen to. He's just there with his own thoughts, and his own thoughts are catastrophic. So. This week has been an absolute shit show for me because it's enrichment week at school. Oh, good God, Enrichment Week is so hard for neurodivergent kids because particularly with Otto's particular blend of neurodivergent traits because Everything so if you don't know what Enrichment Week is at school, it's where they go, you know what, we're not going to have lessons, we're just going to do fucking anything. Let's make pizza and we'll go to the Sea Life Centre and we'll, you know knit a blanket or I don't I don't know what they get up to. There's lots of activities. They don't do lessons and it's f from what I can see just an unholy free-for-all. And in amongst that, some kids will go to residential. So your kids are at residential at the moment because it's in Richmond. Great. Love that for you. My kids, point blank no. That's a definite no for them, partly because of the sleep issue. Jay was never on board with it, and Otto was also just like, no, that would be his worst nightmare. So, my point is that Enrichment Week has removed all of this scaffolding that Otto has throughout the week. He knows what's what. He knows what lessons are what. He knows which safe people are going to be available for him. Most of them are on the residential, right? So he doesn't have those. So he has been beside himself with anxiety all week, which has meant that he wakes up in the middle of the night He's in tears, he's anxious, and he's just come and absolutely vandalized my sleep.

 

Michelle

For the whole week, he got your sleep thief.

 

Mark

Yeah, yeah. I'm so very tired, Michelle. I don't even know where I was going with this. I just needed to get off my chest, I think.

 

Michelle

But I think what you were coming coming to is anxiety and other listeners will have children who are waking up because they're anxious. and maybe they are dropping out of dream sleep. So our rapid eye movement sleep is our dream sleep, which is our emotional processing. So maybe Otto is like processing what's been happening during his day. And then he's dropped out of dream sleep. Because when you're dreaming, you're only just below the threshold for waking. And It's our emotional first aid. So, like, if he has if he's dropped out of dream sleep, he's woken up, it's not been a happy dream he's had, it's going to be much harder for him to get back to sleep.

 

Mark

Yep. And then he's got his own thoughts. And his own thoughts the things that are preoccupying him at that moment are thoughts that are anxiety inducing. Yeah. So he's not necessarily waking up with anxiety. He's waking up because that's what happens in sleep. He just can't get back to sleep because of anxiety

 

Michelle

Yeah, but he may also be like because of the type of week he's been having, he is more anxious. He is probably more hyper-alert, which is stopping him. Like getting down, maybe. I don't know what time he's waking in the night, but he's had his deep sleep happening at the beginning of the night, and then You do more dream sleep towards the end of the night, the second half of the night, you're doing much more dreaming. So he's probably dropping out of the dream sleep and then struggling to get back to sleep. sometimes I support children and teenagers who have got like a recurring dream or a recurring theme to their dreams, and we need to help them process Their dreams. So, I don't know, a dream I a recurring dream I had when I was a child was there was a witch chasing me down my back garden path. So if that was happening for a child I was supporting or if Otto is having recurring dreams or those feet like you're talking about we can reenact those feet. Like what may go through his shoes and your shoes? Like what shoes do you think it sounds like? What colour are these shoes? Like we can break down and turn that dream, that experience into something positive. So who do you think's wearing these shoes? What do they look like? And if they look scary, within stick some sunglasses on them or turn have a f I don't know flower or hat or crazy hat or something and you turn the image into something positive, and then we start looking at that before bed to try and change their perception of what those feet sound like or the pictures and the images in their head. It's called dream rescripting.

 

Mark

Nice, I like it. The final phase of the whole sleep thing is the getting up in the morning part. And this again is an issue that I have with all of my kids, is that they all get up ridiculously early every morning. Now for Tam, that is not an issue because Tam is a morning person. So them getting up early in the morning is actually fine for them. But my kids getting up at five thirty in the morning. is a problem. For me, it's really hard. And it is every single morning. Otto, no matter you know how rough a night's sleep he's had, he's still awake at five thirty Every morning. J is usually 6:30, 6, and India is similar. All of them. Is that a thing for some neurodivergence, or is that just a human thing?

 

Michelle

I would say most families I support would say their child struggles to get up in the morning.

 

Mark

Oh, I'd love one of them.

 

Michelle

Just one. There are definitely children who spring out of bed really early, have got reduced sleep needs or lower sleep needs So I think your family, apart from you, is full of low sleep needs.

 

Mark

That's just the hand I've been dealt, guys. Yeah, good luck. Just gotta live with it. Because you can't do it. It doesn't matter what time they go to bed either. Because, you know, a lot of, you know, the common wisdom would be like, well, just push their bedtime later. And do things that way. But at New Year's Eve, they wanted to stay up till midnight. So me and Jay and Otto stayed up till midnight. They saw the New Year in. I was like, great, at least I get a like. A proper, I'll get a proper sleep in the morning. No, no, 5:30 again. Otto was in my face going, Can I have an apple? That's usually the address he wakes me up with. He needs something as well because he wakes up at 90 miles an hour. Yeah. It's not like a slow, lazy buildup. It's like, all right, what's going on? And then it's like questions and demands. And can I have this? Can I do this? Can you see this?

 

Michelle

Yeah, you've got to get with it straight away. So, what I would say is just like a one-off night, two nights, you're not going to see a shift. In their sleep. But if you've got a low sleep news child and they're waking up at half five and you want them to wake up after six, if we consistently do bedtime later, you will change their sleep cycle. It's a bit like when the clocks change, you know, they don't stay waking up at half past four, they go back to waking up at half past five because you you've got them on a new rhythm and a new pattern.

 

Mark

Yeah, but the first few days after the clocks change, that's an absolute shambles, isn't it?

 

Michelle

Yeah, yeah.

 

Mark

Why is it still night, Daddy? I I just time moved I don't, I can't explain it. They just farmers decided to change time, and now we all have to live with it, okay?

 

Michelle

Yes. It is twice a year, and we all hate it.

 

Mark

The thing is, though, with With Otto getting up early, well, with all of my kids getting up early, and this is something that I covered in a recent episode with Hannah Woods about screen time, is that they have iPads that turn on early. So they tend to wake up and then just look at and watch a bit of T V. And if I was a different person, I'd feel guilty about that. That may be, but I know how important it is for me to get sleep. And I don't, but I just to be clear, by the way, I'm, I don't get to bed before one o'clock usually. Like I'm a night owl. That's when I do stuff. Usually editing new ashambles or preparing new assembles. What time did you receive the email notes from me last night?

 

Michelle

It was definitely gone midnight.

 

Mark

It was 1:30 in the morning, was when I pressed send on that. So, yeah, just as evidence. So, you know, it's not like I need loads of sleep, it's just that my sleep happens later. And so. I do need that extra time. Now, some people do have the opposite problem as you alluded to, and you think that's more common for someone to come to you and say, my child has real issues getting up in the morning.

 

Michelle

Yeah, because generally I'd say the m majority of people I speak to each week on a free call would be saying They struggle to get to sleep. Once they're asleep, they sleep well or they might wake up a couple of times. And then they struggle to get up in the morning because their body clock's shifted and we need to try and get their body clock back on track. It's it's like sometimes like children are living in a different time zone. They might be living like they might not be as far as the States, but they might be I don't know Iceland, Greenland, you know And we need to get them back on the UK time zone.

 

Mark

Yeah, which makes sense. If they're going to bed later, then it's they're not getting enough sleep. So when you do wake them up for school or whatever.

 

Michelle

Yeah, it's impossible. Like sometimes they're really struggling and then they can't get their child into school and then you're getting attendance letters and It's just really, really hard.

 

Mark

So for any neuroshamblers experiencing that with their kids, how do you navigate that knotty issue?

 

Michelle

So interestingly, like we don't always deal with bedtime straight away. We work on the morning. We start making it easier for them to wake up. So like for example, like waking to daylight Getting their body clock ticking for the day, much like before you've even tried to wake them, we expose them to daylight. So that's not like just suddenly flinging the curtains open and going, Come on, wake up.

 

Mark

Yeah.

 

Michelle

It's Well, at this time of year, it's summer, you know, we can open the curtains, have them in like loads of daylight, and then half an hour later, you'd go in and try and wake them up. How that works is because your eyelids are so thin, light travels through, turns off melatonin production because they've probably got melatonin hanging around. So you get what's called a melatonin hangover when your sleep hormones are out of kilter and when you you know you've got a melatonin hangover going on because your child's groggy, hard to get going, grumpy in the morning. So what we want to do is we want to turn off that melatonin production with light and also get their body clock ticking from the same time every day, which makes falling asleep earlier easier.

 

Mark

Okay.

 

Michelle

Yeah, we we solve a sleep problem by starting with the morning, which is a bit different to what people expect.

 

Mark

Yeah, that makes sense. One of the things that I really feel like we need to talk about isn't really to do with the kids and the sleep with the kids. It's the effect it has on the parents. Because it's very often overlooked. And I don't see many people kind of talking about it outside of neurodivergent circles. But the fact that Parents of neurodivergent kids have such shitty sleep. So if our kids can't sleep, obviously we can't sleep. And I'm not just talking about Otto waking up in the night and wriggling next Me with anxiety and me not getting a good night's sleep. But also, our kids having issues going to bed very often eats into downtime that parents need and don't get. So you're saying sort of if we push Otto's bedtime later, that's fine, but that also reduces the amount of time I have to have downtime or to do things that make me a You know, a person, not just a parent, you know, and that's a really difficult thing because a lot of neurodivergent kids aren't just awake and cuddling up on the sofa and watching A family show together before nipping it off upstairs when you say, All right, like, bump him on the arm and go, All right, time for bed now, son, ruffle his head, off he goes. That's not how it works, right? They need parenting. right? And they are there are there are demands and there's also just chaos in the house. It's not calm. It's not calm at that time of night if they're awake. And I think that has a huge impact on parents not getting enough down time and enough them time. And I don't hear it talked about enough.

 

Michelle

Yeah, you're right. And I think it's only in neurodivergent circles where people get it. Like so many things that we experience day to day, that unless you've walked the journey, you don't really get it. So, very often you're right that so many parents are doing bedtime and then Maybe bedtime's taken two hours and then they're wrecked themselves or they're falling asleep next to their child. They're not getting any time for themselves after having done bedtime. They just flop into bed themselves. And that has a huge impact. So, what I do is I also talk to parents about doing something for themselves before even starting bedtime. Because we go into bedtime often completely depleted ourselves It's a time where you enjoy bedtime, but lots of other parents hate bedtime. So it's like they're doing bedtime when they haven't eaten. They haven't replied to maybe, I don't know, twenty five messages on WhatsApp and they have done nothing for themselves. So it can you can Yeah, you you just you're going into bedtime not having topped yourself up and recharged yourself.

 

Mark

Yeah, that's really good.

 

Michelle

thinking about doing something for yourself, whether that's going out and watering the garden, whether that's in my case eating a Freddo in the utility room that I used to do. Or just going to the toilet and scrolling on your phone for five minutes and just like take yourself out of parenting for a bit of time. Before doing bedtime, but always make sure you've eaten, even if it's not a full meal, just like make sure you've eaten a snack or something to fuel yourself before doing bedtime

 

Mark

That's really good. Because you were sort of talking earlier about when you're trying to get them to sleep and they can sense that you're just trying to get them done, right? Where you just come on, you know, hurry up. I've got this thing that I want, or do you know, I just need some time away from parenting just for a moment. And they can definitely sense that, and they can definitely pick up on that. And I know I'm guilty of it, and I'm sure lots of other people are. And that if you've got a PDA kid, is feels like a demand and they can definitely sense that. Our neurodivergent kids are probably a lot more perceptive of these cues. A lot of them are incredibly good at pattern recognition and they notice this happens, and that might be causing the issue. So you're right. If you can Take a little moment to say whatever it is that you want to do. Yeah. And easier said than done, just to be clear, it's never nothing's easy. But yeah, just keep your eyes open for opportunities, Eric.

 

Michelle

So I'm supporting a family. I've just finished supporting a family, sorry, one-to-one at the moment. And their goal was for their child to be more emotionally regulated at bedtime. And when I had the consultation with them, it was clear that dad struggled with his own emotional regulation at bedtime. And I felt like they were really feeding off each other. So it's like we worked on Him having like off duty, that's what they said. They were like dad was off duty for 15 minutes Before bedtime started, and like the mum was just like, No, you're off duty, go, go, go. And on the times where he didn't do it, they all noticed how bedtime just didn't flow as well.

 

Mark

Oh, really?

 

Michelle

So it's like. Really important to look after yourself before doing something that is quite depleting.

 

Mark

Yeah, especially when you've got that accumulation of sleep deprivation as a parent as well, and you're just You know, running on empty, which is how a lot of parents of neurodivergent kids feel a lot of the time, I'm sure. So it's, yeah, you know, it's not easy to get that time, but if you can, I think it's probably It'll probably have a beneficial effect on bedtimes.

 

Michelle

Yes.

 

Mark

So, obviously, all of these issues with sleep, with bedtimes, with going to sleep, with you know, waking up in the middle of the night, it all basically leads to sleep deprivation, right? It all adds up to at least one of you getting deprived of sleep, usually more than one person in the household Especially if they wake up other people in the household. So it's the parent and the child and potentially sibling sleep deprivation, a long-term sleep deprivation or cumulative sleep deprivation. I'm guessing. is probably quite quite a bad thing for the brain. Have you got any information about that? Like, should we be worried? It's what I'm saying.

 

Michelle

Yeah. Okay. So we want to correct it.

 

Mark

Yes.

 

Michelle

We want to be worried about it. We want to do something about it. But just picking up on your point like one child's poor sleep has a ripple effect through the whole family, it is far reaching. So, you know, how sleep deprivation can show up for us is like it affects our focus and our concentration and our like kids' ability to learn and concentrate in school.

 

Mark

Which is already hard enough for a neurodivergent brain in that environment. Anyway, yeah.

 

Michelle

Yeah. They're going to have less tolerance for their siblings, less tolerance for like the demands of the school day or anything like w that we're asking of them in the evening. But sleep deprivation can mimic signs of ADHD. So if you don't have a child with ADHD, they can start presenting as though they have got ADHD. Or if you have a child with ADHD, their symptoms of it are going to get worse if they're sleep deprived. Okay, that's interesting.

 

Mark

So is that sort of the attention deficit side of things rather than the hyperactivity? Side of things, is it both really? So, when you say that people are overtired, sometimes you see them just go fucking nuts, they're overtired.

 

Michelle

So, that's that's interesting, yeah. And emotional regulation is harder. Like, you know, when we're showing up tired, we're much more snappy, we're less tolerant. That concept of like running from the gut, you're just much more impulsive.

 

Mark

Yeah.

 

Michelle

So it's harder for our kids and it's harder for us as the parents.

 

Mark

And again, our kids sometimes find it hard to regulate their emotions anyway. So if you add a lack of sleep on top of that, it's like double whammy.

 

Michelle

Yeah. So like resolving sleep is like sh is fundamental to like other stuff being able to start falling into place.

 

Mark

Yeah, I mean, if we all know it, it's just not easy, right? It's not an easy thing to do. But yes, it does have a big impact.

 

Michelle

For us as parents, you know, in terms of like supporting our neurodivergent child the next day, like if we're underslept, you know, we have less patience, we've got less capacity. Trying to get people out the door for school in the morning. Like, we might be shouting and then, like, going to work feeling guilty all day because we're underslept and we just, you know, haven't got that ability to co regulate with them as we would normally because the capacity is not there. We're waking up with not enough energy to hold it all together.

 

Mark

Yeah, and then we're not getting it at the other end of the day when we just need some downtime.

 

Michelle

Yeah, we know we need the downtime, but then we're scrolling on phones because we're trying to get our own downtime when we actually should be asleep.

 

Mark

Oh, I'm terrible for that, by the way. Just to be clear, it's a yeah.

 

Michelle

I think we're all guilty of a doom scroll from time to time.

 

Mark

Yeah.

 

Michelle

It's not all rubbish.

 

Mark

So with every episode of Neuroshambles, I try and find some positives in this. And I'll be honest, we're scraping the barrel for finding a positive of just the whole sleep routine. really for most parents of neurodivergent kids. You know, personally speaking, melatonin has been a positive for my family since we started using it And also my bedtime routine with Otto in India is just ridiculous and stupid and fun and a lot of effort, but it's having that connection is great and I really enjoyed that. And I you know That's all I've got for the positives. And I know that that's not shared by many other people out there. So have you got any positives for this one?

 

Michelle

So, what I think is, we've got neuroexceptional kids, as you like to say, and They are so great. Their brains are so great. And they are so great to be around. So if you've got a child who maybe has got reduced sleep needs, maybe they do need a later bedtime and You're going to be up later in the evening with your child who can give you so much, entertain you so much. and inspire you and create some special time with them, try and get them off their screens, play some games with them, spend some quality time with them because it's precious time with precious kids.

 

Mark

Not always.

 

Michelle

But it could be.

 

Mark

Yeah, no, absolutely. Absolutely. Another positives is that We've got lots of good advice of how we can improve this bedtime shit show that everyone is experiencing. So, you know, I'm sure you've given lots of people some food for thought as well.

 

SECTION INTRO

Neurodiversity Champions

 

Mark

Okay, neurodiversity champions. Now, these are the people or organizations that are doing miraculous things in the world of neurodivergency. Have you got any neurodiversity champions for us, Michelle?

 

Michelle

I do. So the the amazing lady who saved my family life is Madeleine Woolgar Neuro Embrace. She is just so fantastic. It's like She can just be describing my children and she's never met them. It's just it's just so incredible. The golden nuggets that she gives us is is fabulous.

 

Mark

So you still work with her?

 

Michelle

So she's got a membership and I'm part of that a small monthly cost and Yeah, monthly trainings, monthly Q and A, online coffee thing to meet other people in the community and it's just So brilliant.

 

Mark

That's amazing. And like she was the first person that made you realize that actually you you needed to approach these issues with sleep from a neuroaffirming angle.

 

Michelle

Rather than so, she's the first person I ever told that I thought my children might be neurodivergent.

 

Mark

Okay.

 

Michelle

And I started working with her, did our parent program, her parent program, and then after the parent programme finished, that's when the sleep thing started happening. And then so I had a couple of one to one sessions with her and started thinking about how to support them differently at bedtime.

 

Mark

Amazing. I'll put a link to her in the show notes. Any other neurodiversity champions for us?

 

Michelle

Yeah, I absolutely love what ARFID Life UK are doing. Like Michelle my namesake, how they're really raising the profile of the struggles that some neurodivergent children really have with eating and how they're really raising the profile nationally. It's just Phenomenal.

 

Mark

Incredible.

 

Michelle

Yeah.

 

Mark

So if Neuroshamblers aren't aware of ARFID, that is avoidant restrictive food intake disorder. Which I cover in the first episode of season two of Neuroshambles with Dean McMahon. But yes, ARFID is a rough one. It's a rough one. So tell me what ARFID Life UK do?

 

Michelle

So she's joined with other um people on the ARFID journey and they're just like they're really raising the profile of ARFID at like government level and trying to get guidelines and support for families who are struggling because so many children with ARFID like maybe go and see a dietitian, see paediatricians, but because their weight is like normal for their age or their height or whatever, they're not being picked up because normal weight. Like they're not they're barely eating anything. Um, just maybe five safe foods or drinking milk and um their weight is is is okay and they're not getting the service and support they need.

 

Mark

Yeah, okay. We'll definitely put a link to those in the show notes. That sounds like a great organization.

 

SECTION INTRO

Tiny epic wins.

 

Mark

Tiny epic wins. Now, these are the things that in a neurotypical world would. Not be a massive deal, but in the neurodivergent realm, they are major epic wins. Do you have any tiny epic wins for us, Michelle?

 

Michelle

Well, just today my children went on a school residential, which is phenomenal for you know, even many neurodivergent children struggle with that and neurotypical children just like waltz off and Their parents have not put shed loads of planning into making it happen. Like in terms of, I don't know, we've emailed the school about sending in safe foods. I've thought about multiple options of pajamas, thinking about bedding to make sure that the pillows feel right and everything's okay.

 

Mark

How have you done that? They're like... it's a bloody sleep consultant on the phone again checking the bedding. But it's like, no, it's really important, you know, if he's got sensitivity

 

Michelle

Sending them with their own.

 

Mark

Yeah, oh, right, okay.

 

Michelle

Yeah. Own pillows, own pillowcases, sleeping bags, you name it, they've got it. And the predictability, emailing, finding out, well, what group are they going to be in? What order are they doing everything in? Like neurotypical families just Don't have to have this level of preparation.

 

Mark

No, I was talking about this to Tam recently because Tam is a secondary school teacher and is doing residential this week and just saying it's just not cut out for neurodivergents. You know, so incredible work to you for scaffolding it and getting those accommodations in place that your kids feel comfortable doing that. Well done, 'cause my kids would never dream of it. Oh, good grief. There's no way I mean, Otto had the option, he was a hard no. And Jay, I think we all know how Jay would feel about sharing a room with like ten other kids.

 

Michelle

Yes, it has definitely has its challenges, but you know, they're there. And they haven't rung me to come and pick them up.

 

Mark

So that's yeah, well done. Well done. Yeah, that's genuinely incredible. So yeah, I'll celebrate that win with you. I got a tiny epic win this week. I taught Jay something this week, and he let me. Which is not a given ever. So I taught him to shave this week. Yeah, so if you're a Neuroshambles regular, you will know of Jay's long-held dream of having a moustache. He's talked about it a lot. He's, you know, I want to be very early what the flip moment is. Was like, you know, his ambition is to. He said, when I'm older and I have a moustache and a budget, I'm going to parachute onto Mount Olympus. That was one of the, I think, in season one of New England. So, a moustache has long been a fixation for him. And he's got this sort of latter downy moustache he's had for a while, and he quite likes it, but it does, you know, it just looks Bit rubbish to be honest. And I did sort of suggest that if he wants a proper moustache, he needs to shave it so it comes back thicker, and he liked that idea. The fact he would come back like a proper moustache, he was on board with. So I was like, Well, why don't you let me teach you? And he was on board with it. And he'd let me teach him. So he followed my instructions, not without some objections, which I'll get into in the next section because it was value. But he actually. Did it himself and I sort of talked him through it and he did it. And it was a genuinely lovely moment of you know, when when you're a parent, you sort of think, Oh, one day I'm gonna teach My kid to shave, and like there's a lot of things that you think when you're a parent that you quickly just rule out as the parent of a neurodivergent kid. It's like, no, I'm not going to be watching him play Tefall on the sidelines, that dream's dead. However, I've just ticked off the teaching my kid to shave dream.

 

Michelle

Well done.

 

Mark

Yeah, it was nice.

 

Michelle

Well done.

 

Mark

Thank you.

 

SECTION INTRO

What the flip?

 

Mark

Okay, what the flip moments now. These are the moments that our the moments that our neurodivergent kids will do or say something that completely perplexes. Us and leaves us struggling to know how to respond. And so I will follow on from the tiny epic win to tell you what happened when I first suggested teaching Jay to shave. So I offered to show Jay how to do it by watching me first, right? I was like, you know, I could do it. I'll shave. I'll explain what I'm doing. It'll be like a director's commentary or something. I don't know. His response was No, thanks. I always get things right first. Also. I'm not a monkey see, monkey do kind of person, Daddy. What the fuck? Just the way he speaks is Quaint at best. So, yeah, that really put me in my place there. Another one from Jay, again, sort of just on this theme of him sounding like he's much older than he actually is. He just sort of sighed the other day. He went, I hate the modern age. Right. And he went, What was so bad about the Victorian era? Apart from the medicine? Okay, so um, just she muses on being Victorian sometimes, I think. Very curious. I also had a listener send in a what the flip moment, which I wanted to share. This is from Michelle Parton, who was a guest early on in this season, who I talked to about the kids refusing medical help. So it's lovely to hear from you, Michelle. And she said, I thought I'd share a recent what the flip moment with you from my daughter. I asked her to change her T-shirt I think she's I think there's PDA there, reading between the lines. I asked her to change your t-shirt, and she responded with, I will only change if an alternative is provided. which is great. Like really strong. Sounds like she's about to get the unions involved. It's also really something I can imagine India saying to me as well. So, love it. Thank you for sending that in. If anyone else has any what the flip moments that you want to share, please feel free to email them into hello at neuroshambles. com. Same applies to any neurodiversity champions you want to give me a shout out to, and any tiny epic wins that you want to share with the world as well. Okay, that is it for this episode of Neuroshambles. Firstly, Michelle, thank you so much for coming on and giving us your wisdom on the subject that you've been deeply invested in for quite a long time now. So yes, thank you for clarifying some of those issues and giving us some practical advice of what we could do. If any NeuroShamblers want to check you out, then I'll put a link to your website in the show notes. But you do, you know Consultations. You've also got a guide, haven't you? A busy brain guide that you sent me, which looks wicked. So I'll put a link to that in the show notes. That's a free download, isn't it? Just tell us a little bit about what that is.

 

Michelle

Yeah, it's a free download. So if your child's got a really busy brain, they can't switch off at bedtime. There's like five practical things you can do to help you help them switch off and fall asleep more easily.

 

Mark

Amazing. So yeah, I'll put a link to that. In the show notes, along with your website, and then people can click on and have a rummage around your site if they want to find out more. It would also be very remiss of me not to thank you, Neuroshamblers, for continuing to listen and to share and to comment and send in lovely things via email or on the socials. Apart from that, I think we're done now. We can actually try and get some sleep ourselves, Michelle. It's quite late. So thank you for that. All that remains for me to say is have a nice life.

 

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