School: The Early Years | Helen Daniel

EPISODE TRANSCRIPT

Mark

Hello, and welcome to episode 36 of Neuroshambles. Welcome back, and thanks for bearing with me while I took an extra week off in order to navigate the Easter holidays with my lot. Hope you managed to get through it relatively unscathed and significantly more full of chocolate like I did. Before we start, I just wanted to read out a message I had from a fellow Neuroshambler that I had on the socials, which made me giggle. Uh this is from Bea, who said Hi, Mark, just had to share. My daughter took her trousers off when she got home from school, and I asked her why she always does that when she gets home. Her reply was, I like to free my legs from their trouser prison. Which sounds an awful lot like something Jay would say, and increasingly India at the moment as well. So thanks for sending that in, B. And if any other neuroshamblers have Any what the flip moments they want to share, please feel free to email hello at neuroshambles. com and it will definitely brighten my day. Anyway, we have another splendid episode coming up where I'm going to be talking to a new guest about a long-awaited topic of the week. We're also going to be discussing Neurodiversity Champions Champions, tiny epic wins, and sharing some of our own what the flip moments. So I shall dally no longer. Let's get into it.

SECTION INTRO

Meet the guest.

Mark

This week's guest is someone I've been aware of for a while now, as she's doing some wonderful work in helping neurodivergent children and young people understand their own sensory profiles so they're better able to advocate for themselves. As well as being a parent of a neurodivergent child, she's also a qualified teacher, a mentor and a public speaker who runs a fabulous company called Outside the Box Sensory. I am delighted to be able to welcome her onto Neuroshambles for the first time. It's Helen Daniel. How are you doing, Helen?

Helen

I'm great. Thanks so much for having me. I'm really excited about our chat today.

Mark

I'm delighted to have you here. So before we kind of launch into any episode of Neuroshambles, we need to understand a little bit more about your setup there. So what neurodivergencies are at play in your household?

Helen

Okay, so we are in a completely neurodivergent family. My son is autistic diagnosed I am late diagnosed for ADHD, so autistic with ADHD.

Mark

Double whammy, nice. Double whammy.

Helen

I've got so many different diagnoses. I've got them across the board. Dyslexia, dyspraxia, dyscalcula. It's great. And then my husband, is not diagnosed, but is neurodivergent. And it's really interesting because we have completely different profiles, as in I'm the kind of neurodivergent that needs to look at your face to read what you're saying to me.

Mark

Right.

Helen

He's the type of neurodivergent, and so is my son, that need to be looking at something else and able to look to be able to process.

Mark

Oh, that's fun in your household, then.

Helen

And I'm really understanding of my son in that circumstance, not so much with my husband.

Mark

I know, I've you know, I've had that.

Helen

Yeah, and it helps him if he looks at his phone rather than looking at me, which is the best.

Mark

Yeah, no, I feel I feel that very keenly. Um but I've also had to learn to let it go as well. And uh I it's not easy. It's not always easy when it it's You know, something that I feel is important to me.

Helen

Yeah, and we joke about it now. That's the best thing you can do, Locke. We have different profiles. One of the things we've had to get really good at in our relationship is communication. And we communicate very differently.

Mark

Yes.

Helen

I communicate a lot, him not so much. So, yeah, with my son, he's kind of a bit of both of us.

Mark

So, that works quite well. So what's his he's diagnosed autistic, but not ADHD.

Helen

He's not diagnosed ADHD, but I there are definitely traits there. If you looked at his bedroom floor right now, you would definitely see ADHD. It's not all. And also I can't then be frustrated because I'm the same. So I'm like, there.

Mark

Yeah, exactly. You've got to let a lot of stuff slide in our households, don't you? So, yeah, thank you for introducing me to your neuroshambolic setup there. You're in the right place.

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What's the topic of the week?

Mark

So I've discussed so many different topics, but there's been a glaring omission that Loads of listeners have requested that I do something on, and that is the topic of school. I'd say in pretty much every episode I mention different facets of school and the many challenges it presents for our neuroexceptional children. I've been reluctant to address it as a standalone topic, if I'm honest. And it's not because I don't have anything to say on it, it's because there's too much to talk about. There are too many nuances to discuss. My episodes tend to be quite long anyway, and I thought that if I do a single episode on just school, it's gonna be like twelve hours long and I still wouldn't be able to explore it fully. So I decided to split it into several different Episodes. So, in future episodes, I'm going to be covering loads of other school-based topics, such as secondary school, school avoidance, homeschooling, education otherwise, and at school, an episode with a head teacher. um and hopefully one with a Senco as well, just to get a a full rounded picture of what's going on. So there's lots in the pipeline. But the one I wanted to look at first is the early years. So that's nursery, reception and infant school. which is basically up until the end of year two if you're in England. Not entirely sure what it is in other parts of the UK or around the world, but up until they're about seven. Because, let's face it, an awful lot goes on, not only for our neurodivergent little ones at that age, but also the parents. And I think we need to get it off our chest. Let's dig a little deeper. Let's start at the beginning, Helen. Because before your kids go to school there is, I think, a level of anticipation for all parents, because it's a huge step, isn't it?

Helen

It's a watershed moment as a parent. Yeah. I think yeah, we were really looking forward to him going. I was also a teacher, and I was teaching at the time, and I had You know, lots of experience around child development and things like that. And I think before, even before we thought about schools and nurseries and things like that. there were telltale signs for me that there was uh some neurodivergence in my son's profile.

Mark

How aware of neurodivergency were you when you were teaching?

Helen

So I think that I just had a natural affinity to understand that some children needed sensory support. There was a child in my class that needed to just hold my knee whenever I was teaching. And I just let them hold my knee because if I wouldn't knew it made me feel safe. But there were other teachers who wouldn't have allowed that and would have found that Odd.

Mark

Right, okay.

Helen

Um and then there were children that obviously weren't accessing lessons in the same way. And there were all sorts of little sensory things that I noticed in the children in my classes. and the younger children that I looked after, and then, I think, with my own son, there were things that were like he didn't point. He didn't wait, and they came up as red flags. And I was like, Well, he high-fives instead, so it doesn't bother me. He does something else. The thing that really I noticed the most was the communication differences.

Mark

Right.

Helen

And that there was a delay with communication and he was Using echolalia and things like that. And so when we were starting to go towards going into nursery and going into primary school, I felt that was going to be something that might you know, be a difference, but I wasn't anywhere near the understanding that I have now as an advocate. So through nursery, the first year in nursery was really fine because they can just run around and do what they want.

Mark

Yeah, exactly.

Helen

And he had a great time, but the communication was pointed out to me really early. We started to have conversations around that, and a speech and language therapist was brought in really early. Before he went on to reception, I had started to have conversations around the fact that I thought there were he was probably autistic.

Mark

Right, okay. And and did that influence the sort of decision of primary school and that because obviously when you're looking at primary schools from my perspective, I didn't know anything about Jay's neurodivergency at all. He was, you know, he was just full of energy like everyone else. So we just went to the local primary school. We, as it turns out, lucked out because they're amazing and I can't speak highly enough of them, but it could have been worse. From your perspective, I presume you sort of were having an eye on what the best environment would be for him with a view to him being confirmed neurodivergent.

Helen

Yeah, so he was already showing signs of be of having picked up um like reading and maths really early. And for that reason, when I was thinking about a lot of the special schools around us, that wasn't really going to work for his profile.

Mark

Right, yes.

Helen

Then when we were looking at state schools, knowing that he found it overwhelming in the classroom, because when he went into the higher nursery class, he wanted to go outside a lot more than the other children.

Mark

Right, okay.

Helen

A lot more than the other children. He wasn't focusing. He didn't carpet time was pointless. He was like, I'm not doing that.

Mark

It sounds familiar.

Helen

And even for plays and things like that, you know, he was obviously having struggles.

Mark

And this is at nursery age as well, where there are largely

Helen

wild and off the wall anyway. And because he was in a private nursery that was attached to a private school, it was quite structured.

Mark

Right, okay.

Helen

They brought instruction quite early, so they sat and did activities and I A that's not helpful for lots of children 'cause early is is so holistic and I think it should go the whole way through in that way, obviously. Obviously, really holistic and supportive and self-choosing and all those sorts of lovely things. But it really, really you could see the jarring between his profile and the way that nursery was set up. He was very loved, he was very cared for, they adored him, but he had all these challenges with doing what was expected. Then when we were going into reception, I was like, Well, those expectations are going to go up. So we need a diagnosis.

Mark

But y when you applied for the primary school, he wasn't diagnosed. But were you just sort of making the assumption that that's probably on the cards?

Helen

Yeah. We also decided then to go with a private school, a holistic private school that was going to be supportive and have small class sizes. That was already on the cards anyway, because my husband went down that route. I went the state route and had always taught in state beforehand. So we had differing opinions, but we decided actually, knowing the things that we knew, about his profile, that would be the best place for him, probably.

Mark

And it worked really well for us. Right, okay. So so when you s you're sending him to school for the first time? There's already, you know, suspicions of neurodivergency. I obviously was oblivious when Jay went in, but there is that level of anticipation of excitement of like, you're now going to become a different person because you're so used to curating their lives every day. You're with them. So even if they go to nursery, you know, that you're still very much involved in that. And you don't really anticipate that they're going to be learning. in the same way. So so releasing them into the world of primary school, from my perspective, certainly was like, you're going to learn these amazing new things and you're going to come back and tell me about them and you're going to make friends. And there's all of this expectation. When you first sort of send them off on their first day.

Helen

Yeah, and I guess I had this feeling that he, you know, his communication would explode and because I could see that he was bright, all all these amazing Opportunities and your future is so bright. I suppose the difference for me is I'd we started that process earlier. of having people say even at nursery every single day at the door, he couldn't do this, he couldn't do that. Here's the communication book He wasn't able to do this. Dude, give the kid a break.

Mark

He's just working himself out, man.

Helen

And that's I think that is a huge thing that parents carry nor parents of neurodivergent children carry. Feeling like your child is wonderful and amazing And then all of these expectations that are wholly inappropriate for them are placed upon them And all of a sudden you're told now your child is failing, and I'm like, How can a three year old be a failing human child?

Mark

Yeah, that is a horrible Introduction because you know, that's what you're getting told as well. And I can you know, I've discussed this on previous podcasts, but what are they getting told at that age? You know, like how many times are they being corrected and told that they're not fulfilling expectations? And You know, that's before it even gets to you. How many corrections would it have taken for them to go, Yeah, this dude's not getting it?

Helen

Yeah, and also I think Because c his communication was different and he appeared to be, I would say, delayed communication, but I know differently. He was just communicating differently. He was underestimated continuously of what he was capable of, and because his speech was not as clear or not as articulate, even at three and four, this was happening. And then on top of that, that continuous ongoing negative feedback has definitely had an impact. On him and his well being.

Mark

Yeah.

Helen

And we are dealing with that now.

Mark

That's interesting. I think Otto had a similar thing where he had difficulties with speech early on. But he he had the vocabulary, but he found it difficult to articulate. And he was referred to a speech and language therapist as well. The way she described what was going on for him was was quite interesting. That she said, his brain is like a Ferrari. And his mouth is like a Skoda. Right. So it's like talking a Skoda with a Ferrari engine. He can't quite keep up. And it's like. I I quite liked the way that that that is how it is with him, and I think that may well have played an a part in the fact that he does he has low self esteem, I think.

Helen

A hundred percent. And I experienced that in school I experienced that in school. I experienced being told all kinds of, having all kinds of negative messages when I was in school. And tried not to do that when I was a teacher. However, you do it inadvertently because you say things like, Oh, look at so-and-so sitting next you get taught this by the look at so-and-so sitting next to you. They're sitting so beautifully. Oh, look, you're all now sitting beautifully.

Mark

Get taught judgment.

Helen

Really?

Mark

Yeah. It's like, oh, look, everyone. Jay is rolling himself in the carpet.

Helen

The reward charts and things like that. I had a child who was started with me, and she could only ever sit with her bum in the air.

Mark

And I love that.

Helen

So she would have her head down on the carpet and her bum in the air. She was young. We were talking the end of reception and she came.

Mark

Like a downward dog, right?

Helen

And I just loved her so much. But you know, the it wasn't okay for her to do that. She had to sit. So my job was to get her to sit. The way that she was expected to sit.

Mark

How do you do that? Where do you even start?

Helen

Oh, look at how surge they sit in.

Mark

Yeah, but if they're autistic They don't give a shit how so-and-so's sitting. Oh, great. I I observe that they're sitting like that. I'm going to be doing this for the rest of the day. Thanks for your observation, but I'm going to crack on. Certainly with Jay, that would be how he responded. I think it's worth pointing out that that is just one these expectations that are baked into education in in primary school, I think. Because it starts there, right? Nursery can be a little bit more free form unless you're going private, obviously. In which case it sounds pretty regimented, but generally it's like free play, and you know, we will coalesce at some point to eat snacks and then just disappear again. And it was a bit more freeform, certainly the one that Jay went to. Primary school is where you start introducing those rules and those expectations to get everyone, all thirty odd children in that class conforming, right? Behaving in the same way.

Helen

Yeah. So I obviously taught in state. So I taught in state nursery. I taught in year one, year two. And I always thought it was so bizarre. So I brought in a transition period between reception and year one that brought in more holistic Sort of a few sandpit moments and things like that for the transition.

Mark

Right.

Helen

Because why? This is what I don't understand. Why do we have a teaching pedagogy that says that children learn best in early years this way, and then all of a sudden at year one, it's a knuckle down, guys.

Mark

Strap in, it's getting serious. It's getting why?

Helen

Why? Why like there's no logical reason for that. So I teach about sensory accessibility. And the fact that if a child is taking in more sensory information in their early years Imagine they can hear like the aeroplanes going over, the birds singing, the wires buzzing. Someone just hear the wires and they can see the lights flickering. How much are they focusing on speech in that situation? So they start to pick up different languages, autistic languages, like they might pick up the written code, so writing, maths code, maths. And they start to tune into different first languages, if you like. So our national curriculum and our EYFS are all written around neurotypical development. We have never ever tracked neurodivergent development. We've not tracked and put into written policies what neurodivergent development looks like, what ages they hit milestones, different children hit different things, what Their best learning mode is. So, when we talk about these expectations, These are n neurotypical expectations.

Mark

Yeah, so you're judging them by the wrong marking scheme, if you like. So look, guys, he might be Failing at this standard of neurotypical development, but he's absolutely smashing the math Look at him go. He's like, you know, he's excelling at that, but that's not how they judge them at that age, right? As you say, like picking up on the mass code or the

Helen

The written code or being a visual processor or if you're ADHD more of a multi-sensory processor.

Mark

Yeah.

Helen

So say you need to like I do, I need to read faces at the same time. Well, if my teacher is at the front of the room and they turn away from me, I lose what they're saying for a period of time until they turn back.

Mark

Yeah.

Helen

A sensory accessibility is like this accessibility that we have to teaching methods. And if a teacher is only taught how to teach in a way that neurotypical people, children, access. And they're also then trying to reach these targets that are They were never ever written for neurodivergent children.

Mark

Yes. And they're unrealistic for neurodivergent children.

Helen

They're completely unrealistic. And a lot of neurodi Doesn't children have Motor differences that sit alongside. So having a timeline that is neurotypical in our national curriculum that says at this age a child should start to write like that, is completely inappropriate. For an audivergent child who has major differences.

Mark

Because also that then triggers an increased focus on trying to get them to do that.

Helen

Yeah, and you can do that.

Mark

As well, it's like, oh, no, they're not reaching milestones, so come on. You know, the prod them a bit harder. Reach your milestone. It's like you're measuring on the wrong thing at this point.

Helen

And they send you more homework. So they're like. Oh, you don't you're not you're not able to do handwriting. Cause it hurts your hands.

Mark

Yeah, yeah.

Helen

So I'll send you more handwrit

Mark

Exactly. It's just doubling down on that that you know, I'm presuming, sort of unconscious sense of failure from their perspective and and you as a parent. because they send it back with you as well. Oh, he really needs to work on this. He really needs to work on his his writing skills. So then you go, Okay, I better get him up to speed You know, and so I now have to sort of work with him doubling down. There's no escape for him. You know, like get home, like, all right, we're going to practice some writing. And I'd buy all these different pens, different styles of pens. Maybe it's Pen, that's the problem, and I've tried. It's like, no, he just is not there yet, he's not ready yet.

Helen

I said the OT for my son. I went into the last EHCP meeting that we had because we're not in school anymore, but um we went into the last EHCP meeting that we had and I was she's just said We're taking the handwriting target out, aren't we? And I was like, Yeah.

Mark

Yeah, don't bother yourself with that. He's not interested. You shouldn't be. No, no. So Maybe here I'm making this up as I go along, by the way. Maybe those early years aren't to help them to Achieve milestones. Maybe the whole point is helping is understanding their neurotype and how they want to learn. And then, once you understand that. you can set appropriate milestones if you need to or remove the milestones if you need to at that stage. So the early years are not focused on achieving set goals. They're focused on achieving an understanding of how those children learn.

Helen

Yes, so I am a massive advocate of sensory profiles, and I think that that's what we need to be focusing on. What is this child's sensory profile? What are they accessing? How are they accessing it? How can we facilitate that? What are their special and their special interests and their executive functioning all sits in those areas. Areas where they're focused That's where that all sits. So a child in my family who's very musical, we were told they didn't have particularly good executive functioning at school because they couldn't follow verbal instructions. Well, verbal isn't their first language. But if they sit down to play music, they can play beautifully, they can move their fingers, they can play by ear, you know, they're using their motor skills, they're using their executive functioning, and it's wonderful and amazing. But that isn't something that we look at in schools.

Mark

No.

Helen

We don't fail children on not being good at music. We don't fail tell children their failures if they're not good at art. Yet we don't If neurodivergent children, that's their ability area, if you like, they'll be children that are using their visual sense and not their speech at all.

Mark

Right, okay.

Helen

And if you look around when you're walking around, there's patterns everywhere. Like we as human beings love patterns. There's patterns in the street, there's patterns in the fencing, there's pattern everywhere and they recreate that in their play show you patterns. And then we as a society go, oh, that's weird.

Mark

But it's not for lining up the cars and stuff.

Helen

Cars in the street are lined up.

Mark

Yeah, yeah, exactly.

Helen

Bricks in the house are lined up. You know, everything we do is in a pattern. They're just showing you what they're doing.

Mark

And then, like, they said they're doing that. And it's like, stop doing that and listen to this. It's like, no, but this is me showing you how I play, how I work, what I'm doing. As a teacher of children of that age. that must have been quite hard for you to sort of understand that people learn in different ways. But you're still having to point to the milestones and you're still having to feed back to parents that that child is not reaching the milestone, possibly knowing that there might be other things at play there.

Helen

I don't know what was causing me to feel so much angst about the fact that I was trying to get these children to reach these targets. It was just an underlying constant anxiety for me as a neurodivergent person.

Mark

Right, okay.

Helen

Not only as a teacher with the children and seeing their struggles, but and having had those struggles myself. but also as a neurodivergent teacher, trying to navigate the social expectations of being a teacher as well.

Mark

Right. 'Cause you you weren't were you diagnosed at that point?

Helen

No.

Mark

So you didn't know why, you just didn't didn't want to see people.

Helen

So we, this is, we, our household is such a contradiction because we love seeing people.

Mark

Right.

Helen

It's just there are some times when we see people and we just make faux pas left, right and centre because they're not thinking in the same way as we are. So we say things and it's a faux pas. Whereas the other day I gave a talk and I sat down with All Neurodivergent speakers, and we just talked over each other, talked at each other, and had an amazing time. Because we're all info dumping away and having a good time.

Mark

But no one's sort of pointing at the neurotypical conversational rulebook and going, look at this, you spoke over me. You didn't give me eye contact.

Helen

So really interestingly, as a teacher in the early years, I saw how hierarchies start to form in nursery

Mark

A nursery? Okay. Yeah.

Helen

So that's early.

Mark

Yeah.

Helen

So there were like um children who were calling the shots, I guess. Deciding what would happen and how what we're going to play today. And other children fell in line with that. They were like, oh, right. If I play this, she'll be friendly to me. And if I don't play this, I get left out. So I will play this. And it started really, really early. Whereas our neurodivergent children often aren't involved in that, learning about

Mark

The social hierarchy things, yeah, they don't pick up on it.

Helen

They can't pick up on it. And so, all of that speech that's going back and forth, You know, you might have a neurodivergent child who's an early speaker, but they might have picked it up from books and then they speak completely differently. And they don't pick up on those social media.

Mark

Just think about Jay, who speaks, as I described before, like a Victorian landowner. When he was young, it was just that his terminology was beautiful and hilarious. But it was very other.

Helen

Yeah, and that and other children notice that and don't know what to do with it, so reject it out of hand. So that's the double empathy problem. Damien Milton. That is about the m the mismatch between communication styles, but I think it starts really early. Like your ADHDers aren't doing as good listening 'cause they've got so much multi sensory going on. They're doing a lot of talking, but not as much taking in. and say, well, the children get frustrated with that. And then you've got your autistic children who are just interest based.

Mark

Yes.

Helen

And then they go through into social situations. And then in primary school, the cognitive processes that go on for neurotypical children around that hierarchy gets more complex.

Mark

Yes, there's lots of nonverbal communication in there. There's status stuff going on. And so essentially our neurodivergent children are sort of outside of that. And so they're not playing by those rules. So I I s I guess socially they're being disregarded by their peers, they're not being included. It's certainly something that that both of the boys experienced. India, I think, was different in the India was quite high masking. So I think picked up on that and observed that and went, well, I'll just I'll just toe the line. I'll just, you know, fall into place. I think over time she's been much more like, no, these two are my people. They are equally as bonkers as me in our own little way. and everyone else not not fussed about. But I think in the early days it was a bit more just sort of towing the line with in terms of those neurotypical social expectations.

Helen

And I remember being in the playground and thinking to myself I'm going to keep quiet today. I'm not going to talk a lot. I upset people when I talk a lot, and I talk over people. I'm not going to do that today. And the first thing that came up about a boy band that I love, I was like, I love that boy band.

Mark

No one could set you up. Yes, that's interesting that you were aware of that at that age because I don't, you know, I have no idea of how aware my kids are of the fact that they are different and that they are be I can see it a mile off as a parent, this social because so much of primary school is about learning those social rules and learning to make friends And I can see one of the early signs of neurodivergency in in both of the boys was that we could see that they just they were rubbish doing that, right? In a neurotypical way, just to be clear. But they really struggled to make friends, partly because Jay didn't particularly want friends. So he didn't see a value in and also, you know, he does his own thing. You know, his his teacher described him in an early parents' evening as being entirely driven by his own agenda. which is still the most perfect description of him I've ever heard, right? So he didn't he wasn't going to bend himself to conform to someone else's Conversational expectations, but we noticed quite early on that they didn't fit in. And I wonder how aware They were, or they are, of that. And so you're saying when you were little, you were aware of that.

Helen

What's your thing in primary? And also, I remember seeing my son at play dates. and he would go very, very quiet. And when the other children started talking and chatting, he would look around just confused, like what are they doing? But if you think about that idea that Speech might not be their first language, so to speak. And they're really interest based. So they're already like, you know, when you talk about that, being very focused on what they want to do and what interests them and what they like. that is just their profile, and that's okay. It's okay to have that profile. It's just that we as a society judge that as being inappropriate. And as well as that If you are learning speech on the job, if you like, you're catching up. Speech very much for neurodivergent Children does what it says on the tin. I'm just gonna say it. I'm not thinking. So, you know, I say in the book about if you give a NeuroDivergent child a present They're like, I don't like that present. A, that I'm communicating what I'm thinking, and B, that's useful information for you to know so you don't buy me that again.

Mark

Yes, yeah.

Helen

But as a society, for some reason, we've made that like you no, you're supposed to lie.

Mark

You just yeah, yeah, just smile and and say thank you and then But why?

Helen

Why do we have to take care of the other person's emotions?

Mark

Because that's apparently how society rolls. I mean, I don't make the rules, but I do adhere to them. Rigidly, because I am cripplingly neurotypical. But yes, your point. I completely understand your point. And that's where I've had to shift my thinking completely with my kids and the way that my kids Communicate with me and communicate with other people. Trying to not guide my children to follow neurotypical norms unless it's absolutely necessary. You know, if you bump into someone. Just say sorry. Like, I know you don't mean it, but it'll just stop them thinking you're a douche. You know, that's not how I explained it to them obviously.

Helen

Yeah.

Mark

But there are. some some rules that you can try and nudge them towards. Again, no expectations.

Helen

Two thirds of my children are PDA. So in school, if you think about the So teachers often see neurodivergent children as rude in the way that they're communicating. But in all honesty, they're just communicating how they feel. They don't have the process Of going so if they're a visual thinker, they might have to take your speech, turn it into pictures, like Temple Grandin talks about this, and then turn it back into speech. In that process, you don't have the opportunity to think, oh, but also I need to look after your emotions in this company.

Mark

I need to read your. body language and understand how you're responding to what I'm doing and then or or think about how you would perceive this in the same way. It's yeah, it's The double empathy problem all over again, which we discussed at length in the empathy episode with Heidi Maver, and we also talked to Pete Warnby about it. So this it's coming up loads of the double empathy problem, and it's sort of like that just opened my mind. And it's a wonderful way of looking at things and yeah, comparing them.

Helen

And I think it's not understood in schools.

Mark

No. Well, I mean, I am a parent of three neurodivergent kids, and I didn't understand it until about four months ago. You know, I I understood broadly, but it had never been put in clear terms for me to be able to understand and move forward with, I guess. And this is If we don't understand it and if teachers don't understand it, how are other kids supposed to understand it? And this absolutely gets in the way of that communication and that socializing and their ability to to make friends.

Helen

And the and they don't know about their sensory profile either. So they're sitting next to a child next to them thinking, Why can't I do the same thing as you?

Mark

Mhm.

Helen

Why can't I access this lesson? Why can't I understand what's being said, but I kind of process it in the same way as all the other children who are doing well in here. So it's all of those feelings that neurodivergent children in primary school, in secondary school are have inside them.

Mark

Yeah, yeah, from an early age, they they are they understand that they don't f fit in, right? They're not matching everyone else's expectations. Which is heartbreaking to to think that that's what our children are going through.

Helen

And I think for that reason, my son sought out And found children that were not as speech-based, so they would play tag in their playground, were into the same interests as him, so they talked about Pokemon continuously. We always really went with his interests. I don't know how I knew that because I had I didn't do my Masters until I was in my forties. And that's the masters is the thing that really gave me the language to understand that jarring I had when I was teaching in primary school.

Mark

Right, okay, so what was your masters in?

Helen

It was in Autism Studies with Luke Bearden, Dr Luke Bearden and some other amazing tutors who just talked to me about social constructs in a way that I had never had talk explained before. But even before that, I just had this belief that my child should be my child a hundred percent.

Mark

Yes.

Helen

Be himself. And therefore, there were all kinds of conversations with my husband around yeah, just let him So he was really into traffic lights at one point and I just bought him loads of toy traffic lights 'cause why not? But other people got very concerned about this and were like, well, he won't be able to socialize with other children if you let him get be into traffic lights or be into lifts or be into the things that he's into.

Mark

then maybe they're not worth socializing with. If they can't get on board with traffic lights, they're not worth knowing.

Helen

And he has been grown up with that sense of himself. So he is very interest based. I'm proud of that.

Mark

Yeah, which is great, which is fabulous.

Helen

But having said that, we have had to end our school journey. because he started to show signs of avoidance, I believe, because of the continuous underlying message that lot of what he would say or do in lessons like there's been so many examples if with inference, he has a completely different set of rules for inference to neurotypical children. So you know, they got he went through we we had therapy in the past where he learnt that green meant happy So when he s is speaking in about English, and he might have said, Oh, that maybe that girl's green with happiness

Mark

Right, okay. Making up his own metaphors. But but that is based on what makes perfect sense to him, yeah.

Helen

Making up his own metaphors. When he's thinking about when Nora DeVosian children are thinking in inference and they're like, What's it like to go on the beach? Well, some neurodivergent children are going to be like, It's awful. Yeah, it's as traumatic as a day on the beach.

Mark

It's like, I don't think that tracks with the neurotypicals.

Helen

Sound in my toes. No, thanks.

Mark

Yeah, I totally get it. But it because it's so subjective.

Helen

But then they're told, no, that's wrong. He's answered speech and language questions. No, you're wrong. And when that happens continuously throughout school, throughout your time, even though he's incredibly bright and there's all these amazing things, that affects you. He's trying to avoid academic-based questions where he doesn't know the answer, where he's not which obviously doesn't work if you're in a classroom environment because or a test situation.

Mark

Yeah.

Helen

He doesn't want to answer any questions because he's worried. And on top of that.

Mark

Which is an entirely reasonable response to being continually told that you're wrong. It's like, oh, just, you know I'm going to avoid that because that makes me feel bad.

Helen

And his school were amazing and are amazing and love him so much. Like the Senco adores him. They were brilliant. But they can't change the national curriculum. They can't change the system.

Mark

But we can, Helen. Starting out. No, this isn't the start of a movement, but it's definitely something that needs to change, I think. So we've been sort of talking about initial challenges, certainly in terms of the social challenges that our children might face at school and some of the learning challenges. There's also just school in itself, I think it needs to be acknowledged, is Overwhelming. Like, as a parent going into a school, it is absolute carnage. Like, I am overwhelmed as a allegedly neurotypical Grown human. I am completely overwhelmed by it. It's the the echoiness of it and the smells and the the noise. They're just the noise. So That's me. How on earth is a neurodivergent kid supposed to thrive in that environment, to be able to pay attention to what a teacher is saying with everything else that's going on? If you think about the riot of colors on the walls, And the the noise that other kids make and the scraping of the chairs and all of that is triggering to me. So I can only imagine what our kids are feeling.

Helen

So, if you think about the school bell.

Mark

I didn't even think about the school bell. Yeah, that is.

Helen

Yeah. So we have as a society decided what level of decibels is appropriate for different things like hand dryers and school bells. But it's based on neurotypical experiences.

Mark

Yeah, exactly. They're like, yeah, seems fine.

Helen

Yeah, this is what is okay.

Mark

There's three children cowering under the desk. Yeah, it's fine. They'll get used to it.

Helen

And actually, my son used to have to grab his ear tenders and wi had that level of anxiety because The bell might before the bell went, yeah, he'd have his ear defenders, yeah.

Mark

So, just like, think about how, like, ingrained in him the prospect of that bell going off, yeah.

Helen

And the feeling of that constantly, like every hour throughout the day. And then you have all of the challenges. So like we said earlier, if they can hear the wires buzzing. Most people can't hear the wires buzzing.

Mark

Yes.

Helen

So they're hearing more.

Mark

Yes.

Helen

It's it's like, why are we not why are we not talking about this? Like we talk about hearing less. We never talk about hearing more and how that impacts. And they're often told things like, oh, it's not that smelly. You'll be all right. Or it's no, it's not that to you, dude.

Mark

But I smell like a dog. I don't mean I smell, you know, like a dog. I mean, I've got the sense of smell of a dog. Like, India is incredible. Like India's sense of smell is phenomenal.

Helen

And because neurotypicals don't have that, it doesn't exist.

Mark

Yeah, yeah, yeah, exactly.

Helen

And so it's not about us not having empathy. And I'm like, hello?

Mark

Yeah. You know, that whole school environment is. not suitable for neurodivergent kids. And it's so hard for it's so unfair of people to then look at the milestones and go, look, he's not doing this. It's like, can you imagine what he's going through every day?

Helen

And the point that really frustrates me is when they say neurodivergent children don't are not resilient.

Mark

Yeah, dude. Yeah. It's incredible how much i i they go through just to be there.

Helen

I'm like, we are the most resilient.

Mark

Yeah.

Helen

to even step foot in those classrooms to focus their attention. So we talk about monotropism, where neurodivergent children have to almost zone out All of that overwhelm and all of that input in order to focus on what they need to focus on. And if you've got that much information coming in, you've just got an incredibly busy brain. And it's just overwhelming. And if you think about having an incredibly busy brain, like all of these input messages are what kick pulses da da da they've got to process that somehow. And the way that they need to process that through their body is to move their bodies. So, neurodivergent children need to move their bodies more than neurotypical children. And they don't get the opportunity to do that.

Mark

And because you sometimes you see you look at a classroom and you see children sitting still and it's a mind blowing to me Because it's just not anything that I'm used to experiencing with my kids. And that is, again, one of those things that stands them out from their peers is that They need to move, they need to stim, they need to make noise. Um, they need to like Jay needs to hum to himself sometimes when he's concentrating. All of this stuff is other people perceive as disruptive. It's like what he needs. This is him trying to level the playing field that he's having to compete on. And he's not allowed to do that. I mean, I say that. Jay's school have been phenomenal.

Helen

Yeah.

Mark

Like all of my kids have been in that school. I can't praise them highly enough in terms of giving him movement breaks and letting him walk to and from the fish tank when he needed some time. There's loads of accommodations that they made for him. So but I'm I'm aware that not all school all all schools are like that.

Helen

We had the same. We had an amazing team around my son, and he was able to go out and do they had sensory circuits, they had all kinds of things, and he had Support to do that to go in and out. So we had the same. I also think in primary that's much more the case than when you go to secondary.

Mark

Yeah.

Helen

When it's done well and they're given the opportunities to move their bodies, it's fantastic, but actually it's still the environment's still shockingly bad for them, isn't it?

Mark

This is the thing. I think fundamentally Something that Tam said to me once, just off the cuff, that I just love the phrase. Tam just went, fundamentally, our kids are not school-shaped. And it made perfect sense. Certainly Jay, Otto, increasingly. It it's not made for them. Like that environment is not made for them. Academia, yes, a hundred percent. They are smart kids. And if they they're interested and they're engaged in something, they will fly with it. But the the school environment is so tough for them, it's so difficult for them. And I see it every day. And over time, you start to realize that they're struggling. You initially send them in, you're like, oh, you know, you're they're hanging around people and you think they're okay. And in the early days we were told they were doing okay, but over time you notice that they're not. And that is, you know, with both the boys, it was socially and kind of over time there's this dawning realization that there are challenges that they're struggling to meet. And it became very clear that other children weren't, not just from watching the children, but the Fucking parents You know, the parents going, Oh, well, you know, my child's doing this and you know, th you you be you notice Because it feels like you're standing on the sidelines, I think, as a parent of neurodivergent kids. When you see other parents, arranging play dates for those other kids because socially they click, right? Or you see the chatter about, oh, are they going to go to the school concert this year? Or are they going to do the school play? All of these things that it's like, my child is not going to be able to do that. It doesn't want to do that. It's not for him. So you start to feel isolated.

Helen

Yeah, and I think I to some to quite a large extent felt isolated around other parents.

Mark

Yeah, absolutely.

Helen

The parents themselves seem to a lot of the parents, not all at all, because I had some lovely parent friends, but the parents themselves seemed to have sympathy, a weird sympathy, but not empathy.

Mark

Right, okay. So they knew that something was different.

Helen

Yeah, it was so odd. They would talk as if Oh, oh.

Mark

Oh, like o out of pity.

Helen

As he are you going to come is this no, but they weren't meaning to. I don't want to.

Mark

No, no, but it's like, oh, your child's not like my child, and my child's the best. So I feel sorry for you.

Helen

My son was incredibly bright. They knew he was incredibly bright. And also, as the children got older, you know, they were doing different things to us. But I also remember trying very hard to fit in for a long time.

Mark

Is this pre pre diagnosis? This is pre-diagnosis.

Helen

Me as a neurodivergent person trying to fit in with their schoolgate conversations. Before I had my diagnosis, I was trying to fit in.

Mark

Yeah.

Helen

And then I did my masters, I got the diagnosis and I was like, oh, actually, I don't need to fit in. I don't need that.

Mark

That is a big moment, isn't it? Because you feel Inadequate. You feel lesser when you're trying to have those conversations and they're obviously doing things that you're not doing with play dates. And I'd love for my kids to have play dates, but It it just wasn't a thing they were doing. I'd love my kids to be to be invited to a birthday party, and then if they were invited to a birthday party, to be able to go to the birthday party. All of these things, right? Or, you know, oh, are they going to play football? We're going To play football in the park on Saturday, and like, you know, half the class are there. Do you want to come with us? All of this stuff you are isolated from, and it's You know, it's it's hard, it's a hard thing to deal with in the that you you gradually feel like an outsider, and it happens over a period of time.

Helen

So at the beginning, so as I say, we're very sociable. My son is very sociable, so he was invited to all sorts of birthday parties, but they started to become less and less. But he had his core group, so he would go to those sorts of things. We were lucky in that way that he had a core group of children who he still, even though we're out of school, he just had a birthday party. And we invited some of the old children from the school and some of the new children from the home ed setting. And a lot of the children from the home ed setting, this is heartbreaking, were like, this is the first party we've been invited to in six years. And we hadn't we booked an arcade and they all could just do their own thing because it was a they could just go on whatever machines they wanted to and he was hanging out with his friends, and then would go over and speak to the new friends, and it was just beautiful because they could do what they wanted

Mark

Yeah, and you know how to throw a party for neurodivergence. So, yeah, exactly, because you get it, right?

Helen

And someone said to me the information that I sent beforehand was the best party information they've ever had because it had pictures of the venue, how you get there, where the postcode is.

Mark

Amazing. Yeah, exactly.

Helen

Yeah.

Mark

Have you thought about being a NeuroDivergent Party Planner? Because I feel like there's a niche there for you, Helen.

Helen

I used to be an events organizer.

Mark

There you go. It's all set out for you. So in terms of the isolation, you know, your children are a bit more isolated socially. You as a parent are gradually isolated socially. That's where school drop off and school pickups become just fucking horrible. Let's be honest. They're they're painful. And not at first. At first, it's like, hey, we're all walking into school and you know, and because you start out in the summer anyway, like So when you first start out doing drop offs, it was great when you're talking to the other parents, you're getting to know them and but the over time, you can't chat. while other parents are doing that. Well, I couldn't certainly, because I'm having to wrangle my children into some semblance of order to get them off the road. Or off the wall, or off their sibling, right? I'm having to get them off something, right? Whatever it is. I can't have a chat because I'm having to wrangle. And that, I think, is part of where that social isolation comes in. And I I distinctly remember this is pre-COVID, weirdly, because COVID was a whole different thing where you'd have to um when they were going in during during COVID times, it makes it sound like the Black Death or something. But they'd have to line up two meters apart. Okay. Yeah. My children have no spatial awareness, right? So they're not they're disregarding the rules. That was a really stressful 'cause other parents were getting stressed because there was a genuine fear there, right? So that was particularly stressful. I also remember before at drop-off, before the school opens, we were allowed to go in the playground with them. And that's where you see your kids in the playground with their peers. And that is a very early sign where you start to realize that your children are built different. Did you ever have that when you were doing drop offs?

Helen

I think we had it up and down throughout the years. So I think different stages and phases we had it. I think when they get older And as you say, you notice that they are all doing play dates, and maybe you're not doing as many play dates.

Mark

So you're not being invited back to play dates once you do the play dates?

Helen

We didn't even. I don't think we.

Mark

No, I mean, we stank out many a play date. We had that.

Helen

We did have. I think part of it is some parents didn't know whether it was okay to invite. It's a strange thing. We sort of tread the line between in many ways there's so many not neurotypical, but typical parts of our profile, I guess.

Mark

Yes, yes.

Helen

Typical parts of my son's profile.

Mark

Mhm.

Helen

But there are also we would go to parties and obviously parties Are not the most wonderful way for neurodivergent children to show who they are. Because they might be off in the corner spinning because it's a bit noisy or they're not.

Mark

Yeah, exactly.

Helen

doing things by themselves. So then as we got older and they were doing football parties, I think some parents were like, well, will he be able to join in?

Mark

Or Did they invite you and let you make that judgment?

Helen

And I don't yeah, I don't think they did.

Mark

Because if there are any neurotypical parents listening to this, don't know, you know, maybe you're curious. Invite us. We're the people that should be making that call, right? Okay, it's not on you. You don't I I barely know the profile of my own chart, so I don't expect you to. So, invite us anyway, and we can make that judgment pretty much almost certainly on the morning of the actual event.

Helen

Yeah. And I think the majority of people who don't spend time in neurodivergent families or with neurodivergent children, they don't get it. So they're scared of it in a way.

Mark

Yes, exactly. And you know, hopefully we're gonna, you know, normalize it a little bit and and over time not me and you specifically, but you know, part of that movement, I guess. We'll see. So if school drop off is tricky as a parent of neurodivergent kids, school pickup is the absolute worst. I hated school pickup Because when you drop them off, you've you know, you've had them for the morning and you've been able to regulate them as much as possible. You've been able to make accommodations for them, then you put them into school. That's never easy. you know, dropping them off and and they might be dysregulated, they might not want to go in, but eventually you get them in and then you just cross your fingers and hope you don't get a phone call during the day. Not because you don't want to stop what you're doing, but because if they are calling you, it means that your child is overwhelmed and dysregulated, and that's, you know, that's not a nice thought. But you get them in the school Pickup was always so much worse for me because you're waiting with the other parents and the children are coming out one by one, being shepherded out and all of the neurotypical children. Pretty much just seemed so happy. They were delighted. They'd come out and they'd excitedly run up to their parent and they'd tell them excitedly about the stuff they'd learned that day. This is how it felt, I am sure. that I'm imagining it. Like, you know, I'm sure that a lot of this is just in my head, but it felt like these children were released like doves into the wild And they'd be full of joy and peace, and then my child would come out of absolute fucking shambles, you know, like angry or completely melted down. Not always. Sometimes they'd come out and they'd had a good day, and it was okay. But I never knew which version of my child I was getting. And that's so hard.

Helen

For so many parents because that's their that's their safe time to come home and come to you and let it all out and show you what their day was like with their emotions. And that's not what you want as a parent. You don't want to put them in a place where they come out with those feelings.

Mark

Yeah, absolutely.

Helen

You feel so torn because You know, they're not able often as well, our children are not able to express or tell you. I think when my son was younger, it was more so that Other children would run out and tell them about the day. This was what was heartbreaking for me, and I didn't know what his day had been like. And he would be so quiet So that was for us what it was like. Like he wouldn't be particularly explosive or anything, just quiet and like a ghost of himself, like we said earlier. And for me, when he was younger, that was devastating because I didn't know what's happened. And often we would have the communication at the door And they would tell me things and I didn't realize until he was older that he was he could he was understanding some of that.

Mark

Oh, really? Because this is where you get the finger of doom Do you know, like where you get beckoned over by the teacher? Because they, they, oh man, it was heartbreaking because you just, what you hope for is that your child comes out and they're smiling and they run to you, and then you just get out of there. Get you home, let your you know, get your school clothes off, you know, just get naked and let it all out, fine. But very often they'd be held back, and then you get beckoned over by The teacher, and they're not doing it to you know, to tell you off. You're not being told off, but it feels like it, right? You're you, and you sort of then have to kind of shuffle over to a little secret conversation with the teacher, which is in front of loads of other parents as well, who can all hear it as well. And they tell you about how your child struggled that day and what initially it was like what they weren't able to do. Before diagnosis, it was like, well, he didn't do great listening today. And he wouldn't sit still and he didn't listen to me, and he rolled himself up in a carpet at reading time. All of this stuff. And it it it feels horrible to be getting that getting the finger of doom.

Helen

And I think so we had a communication book. That would come back and forth. And for the first few years, when he had the communication book, it was all about all the milestones he's not reaching, all the behavioral expectations he's not following, all the things that he's not sitting down or doing this. But then after a period of time when the understanding grew of, oh, hold on, this is the profile The communication book became beautiful because of the people around him. So it became just fulfilling and amazing. And this is all the things he can do. We had this challenge, but this is what he's doing.

Mark

That's great. That's great.

Helen

So, I have experienced both. I've experienced that feeling of dread. Yes, and that's devastating as a parent because This is your pride and joy. It's your you know. Yeah, it's like I'm doing my best with him. This is the best I've got. And actually, my son is like was overly friendly, was so friendly that he wanted to hold hands with children all the time. And when we got that sense of understanding, the teacher actually said, right, we've made a rule. He just says, Can I hold your hand? If the child says yes, he holds them. If they say no, thanks, he doesn't hold them. And the children would go round and find him and hold his hand and sit next to him and hold his hand. So, you know, when the understanding is there and the support is there, it can be ho pickup isn't isn't traumatizing when they get it right. But as I said before, it's so hard because they can't get it right because there's all these other things Like the environment, and other children and the expectations.

Mark

But sort of diagnosis and another understanding of their neurotype definitely changes the approach to those conversations. There's no judgment or blame there. It's just sort of reporting back on he found this difficult today, which is true. He did find it difficult. Yeah, stop making him do it. I had that with India. India would not put her coat on to come out into the playground. I was like, yeah, she doesn't like coats. Stop making her do it. And but but to be fair, the teacher she had uh two teachers. One teacher uh uh was diagnosed with ADHD. And totally got it. And I just pulled into one side and went, Can you stop making her put her coat on? Because she gets feels very sensory about it, she doesn't like it, and it dysregulates her. And she was like, Yeah, totally, fine, no problem. The other teacher was proper old school. It's like everyone has to wear their coats to get out. So, India would basically put her coat on, and I'd just see her at the door with a face like thunder. And she would literally step one foot outside the door, take her coat off, and throw it on the floor in front of the teacher. It's like you see, but um. If that's my favourite pickups, those ones, because I found it hilarious, and I think the teacher probably found it appalling.

Helen

But, you know, I think what you said about when you have teachers and I think this is so important. So I left the profession as a nor an undiagnosed neurodivergent person, yet our neurodivergent kids could really do with neurodivergent teachers in there, but they'll be losing in their droves.

Mark

Yeah. I mean, if it's overwhelming as a pupil, why would you go back as a teacher? Isn't the whole school environment completely overwhelming, even you know, now? Which is a problem because if fewer people, as you say, if you are neurodivergent teachers are coming into schools, then How are people going to have a more understanding about the way that our neurodivergent kids learn? Yeah, and we are probably the best people to be. Absolutely, 100%. Yeah. I don't know how we'd resolve this. We're at an impasse here, Helen. What do we do?

Helen

Well, I can see a vision of what we do. It's just no one's listening to me.

Mark

Right, I'm listening, but we do not have time right now. So that's a separate podcast. Helen's vision of future schooling. Great. I've got a follow-up already booked. Fantastic.

SECTION INTRO

It's not all rubbish.

Mark

With any episode of Neuroshambles, I like to look at the positive side of things. And I think part of the reason that I've been reluctant to do an episode on school is that there aren't many positives to take from our Neurodivergent kids experiences of school in the mainstream. I think. That that's One thing I can probably take from it is that it's an important part of the diagnosis process.

Helen

Yeah.

Mark

In that you see them amongst their peers, you start to s You know, that environment that you're not used to seeing them among so many of their peers of the same age. So you start to understand that things are very different for them. You start to be more aware of their neurotype and school can then give you the evidence that you need because you need lots of evidence from school in order to obtain a diagnosis Yeah. That's all I've got in terms of the positives at school. You must have some, Helen.

Helen

Help me out here. So I know that for a huge proportion of neurodivergent children and young people, that is the experience, that there are very few positives We, as a family, have experienced lots of positives, but the biggest positive for us has been when you have staff members that just get it, just get your child's profile. They work with your child's profile. They are thinking about how can we make progress for this child in a way that works for the child And I guess because we were in a school where we had a little bit more ability to state what would be right for him and what won't be right for him and work with the school, you know, we were able to work as a team. And you don't hear that very often.

Mark

No.

Helen

Teachers and parents working as a team, but it makes a huge difference.

Mark

Yes. You get a Senco who's who's really on board with it. And we're very, very lucky in that sense. As well, with both of the kids, the infant school and the junior school, we worked really closely with the Zenkos. Once they you know understood that we weren't just wasting their time that we knew do you know what i mean that we're doing the research and we're doing we're we're communicating and we're we're you know we're that we're both invested in it Yes, that is wonderful.

Helen

It really comes down to people who can think outside of the system. That's it. Because the system is the problem

Mark

Yeah, that's the thing I that also probably needs to be made very, very clearly is that the teachers in primary schools are doing a phenomenal job. in very difficult circumstances. They don't have the resources, the training, the knowledge to be able to accommodate for all of our neurodivergent kids' different profiles because they are in their very nature unique. completely unique profiles for these neurodivergent kids, and they just don't have the capacity. So they're doing what they can in very difficult circumstances. What does need to change is the entire education system, which is probably a it's a different podcast. But I think, yeah, it's the education system that we're forced through. The uh the educational sausage factory that our kids are forced through that is the the problem.

Helen

Luke Bearden, who was one of my tutors at university, said said that education for lots of neurodivergent children is the wrong way round, as in they get to really focus in on their interests when they get older. But they should be able to do that when they're younger.

Mark

Oh, I love that. So they send them to university first. Start off with a PhD and see how you get on, kids. Yes, I love it.

SECTION INTRO

Neurodiversity champions.

Mark

All right, we're going to look at neurodiversity champions now. These are the People or organizations that are doing wonderful things in the realm of neurodiversity. So, have you got anyone you wanted to champion, Helen?

Helen

So, progressive education set up by Joe Sims. is an organization that is helping people who want to set up alternative provisions and supporting the home education Education settings and giving trainings around that, and they are just amazing. And they have a website with a directory, so they're fantastic.

Mark

And presumably, as someone who's home schooled you're homeschooling your own child. you're making fulsome use of their resources.

Helen

Yes, so they they also have people come in and talk on progressive education. They are campaigning for changes to the education system alongside.

Mark

So to the mainstream. They're not just sort of separating themselves out from the mainstream. They're saying actually we want to

Helen

Yeah.

Mark

The mainstream is more suitable for neurodivergence.

Helen

Yeah, they have a vision as well. There are so many people that have this vision.

Mark

Great, yeah.

Helen

I'm on board.

Mark

I just don't have the capacity to join in with the admin. Exactly.

Helen

And then we've got Grove Neurodivergent Mentoring and Education, which is a lovely organization that is helping NeuroDivergent children and young people to Be in communities where they can talk about their interests, interest-based communities for children and young people. Awesome.

SECTION INTRO

Tiny Epic Wins!

Mark

Okay, we're gonna get on to tiny epic wins now. These are the moments where, as uh parents of neurodivergent kids, uh we our children will do something that to neurotypical parents wouldn't be a massive deal, but to us is a huge win. Do you have any for us?

Helen

I do. I've got a couple. We went to a silent disco the other day. Oh, cool. In a cathedral.

Mark

Nice.

Helen

And I didn't know how it was going to go because you've got to put the headphones on. That's a sensory thing. It's the environment's overwhelming. You don't know what it's going to be like. I didn't know how my son was going to love it. He loves music, but again, I didn't know. And the joy on his face. Amazing.

Mark

I love it when that happens.

Helen

And just we just danced as a family. for the whole time and it was just gorgeous.

Mark

I have never done a silent disco.

Helen

Other families were just dancing around. You can choose what channel you've got this previous.

Mark

We should totally do it.

Helen

It's amazing.

Mark

I think two thirds of my kids would love it, actually.

Helen

It was just glorious. I love those moments where you just have a thing where you're like, oh.

Mark

Yeah, there was that's that's there's trepidation first when you introduce them to this. I've paid for this already. And this is going to go one or two ways. And the moment where they're like on board with it, what, like massive, massive news.

Helen

Yeah.

Mark

I feel your joy.

Helen

And the other thing is, he's a really big coder. And the other day I noticed that he's got a little community on there and they're so cute together and they're all just chatting back and forth on laptops. Yeah. And seeing that there's more warmth and friendship going on in a typed response than in a speech-based response.

Mark

Well, 'cause you're removing all of the the external shit that neurotypicals are adding to the mix, right? All of the body language, all of the intonation, all of the hierarchy, you know.

Helen

Yeah.

Mark

So You're just reducing interaction to its basest level of, you know that's lovely. Oh, nice. My tiny epic win is that India was invited to a classmate's birthday party. Right, doesn't often get invited to parties, but the invite was amazing, right? So the child had made it, and it was basically just a picture of a cat with a star on it and their address. Right. So I was like, this is hilarious. But and I mentioned it to India and she freaked out because there's not enough information. What is that? What is that? Like, I know it's your birthday, and I know the date and the time, and I know it's at your house, but there were so many unknowns. And India was sort of like, I want to go, but I don't want to go. And she was really torn about it. And I sensed her getting quite anxious. And I said, well, why don't I ask the mum what it looks like? And then you can make a decision. And so I wrote a text message to the mum and just said, this looks amazing and I love it. But and this is the first time I told anyone that Indy was autistic. because she's only just been diagnosed. And I said, Indy's autistic, and she needs to know what it looks like because otherwise it causes her too much anxiety and she doesn't Want to go, but I think she probably will. But can you let me know? And the response I got was absolutely wonderful. Like, I cannot tell you how. brilliant the response well, I'm going to tell you how brilliant the response was. So the the woman was just amazing and she responded and she went Firstly, here is a list of all the children who are coming. Like, wicked, great. I've got a register at the outset, fantastic. And then this is verbatim what she said. It's at our house, so if she wants to come before another time, then that's fine, so she knows what to expect. It'll be Bino themed, and we're planning a pinata, pasta parcels, eating donuts off a string, plus any other games the birthday girl can come up with. We have other rooms India can sit in if she feels a bit overwhelmed at any time. It's also fine if she wants a parent to stay, and you can let me know the things she likes or doesn't like to eat, so we can make sure we have it. If there's any other info that would help, then let me know. I mean, like, if there was a perfect response to that request, I couldn't write it better.

Helen

Could we copy that and use it as a model for all neurotypical people?

Mark

It was so wonderful because like I started welling up when that came through, because you send it and you see they're typing a response, and you're like, oh, well, it's You know, you don't know what you're going to get. They might be like, nah, she's uninvited now. It's like, I said, I don't want to be that guy, like a diva. I wish to see a full itinerary of what's on offer. what entertainments are there? Will there be a clown? Like all of that, right? So when that came through, I was just like blown away by how considered and how empathetic and how wonderfully neuro inclusive it. Was so like huge, huge win. Should actually be in the neurodiversity champions bit as well. So, if there's some double entry for that, mum. So, thank you so much.

SECTION INTRO

What the flip?

Mark

So, what are the flip moments? Now, these are the moments where our neurodivergent children will say or do something just completely bizarre that will. Flummocks us and baffle us and perplex us. Do you have any what the flip moments from your neurodivergent little one?

Helen

So I wanted to tell you about one from when he was younger because I just such a brilliant moment. So he met a child in the soft play. And this child explained verbally all these different things, game that they were going to play. And he was like, You'll be fine, and I'm going to go on to the top of the frame and I'm going to act like I need you to save me. And then you run up and come and save me. And my son was just listening, but Obviously, not taking it all in.

Mark

There's a lot of instructions in play.

Helen

And then the child ran off, went up on the soft plate, draped himself off something, and started shouting, help, help. at which point my son ran up, grabbed on to something and started shouting, Help, help So two children just hanging off the soft play, shouting help and this other child was like, What are you doing? I was like, this is pretty good. Help. We're all singing help.

Mark

I love it.

Helen

It's like, that looks fun.

Mark

I'm doing that. I'm doing what that guy's doing. Yeah, that makes perfect sense to me.

Helen

That was just a what the flip moment, but it just it made me giggle so.

Mark

Yeah, totally. I've got a couple of what the flip moments. One was from Jay. He was criticising his classmates at school, I think. He said, They have brains the size of French walnuts I was like brilliant. Why French ones? And he went, Because walnuts don't grow naturally in France, so they'd need to be imported and would end up small and shriveled. Like he's really thought it through as well. And also, I mean, walnuts do naturally go in France. Let's not I'm just not going to correct him on that one because there's just too much to unpick. I just sort of shrugged and walked on. Just go with it. The other one I've got is from India, where I offered her some salt and pepper crackers. And she went, No, thanks. They'd be better without the pepper or the crackers. So I was like, What? So just just salt then? She went, Yes, please I'm not just giving you salt. But yeah, it's a regular occurrence for what the flip moments in our household.

Helen

My son did say to me the other day, we were watching Harry Potter, I said, Oh, just to let you know, the parents do are not around anymore. And he was like, Are they dead? And I said, Yes. And he was like Oh, the bit of the old. I was like, Yeah. And he goes, like you. Yeah. And he was like, There's a good job you're not dead, but you are very old.

Mark

I mean, there's so much to unpack there as well. I mean, I'm glad that you're glad I'm not dead. You could probably dial back the old bit, I'll be honest. But all in all, I'll take the win and move on. So that is the end of this episode of Neuroshambles. First of all, Helen, thank you so much for spending time with me. Just give us a quick shout out for Outside the Box Sensory and also your book as well, because I want to let the listeners know that it is available and out there.

Helen

So yeah, the book is Neurosensory Divergence or Autistic Languages and it's on Amazon. So it's all about The reason why autistic children find it hard to fit in at school and the things that we could do to change things.

Mark

Great.

Helen

And you can find me on Instagram on OTB Sensory. I'm also over on Facebook.

Mark

Great. And Outside the Box Sensory, what do you offer there?

Helen

Okay, so on Outside the Box Sensory, I offer trainings and I co go into schools and give talks. And I give talks for parents as well. And there are well-being resources on there. And there's future projects coming as well.

Mark

Exciting. Exciting. I'll put a link to both of those in the show notes. Thanks for that. Thank you also to you Neuroshamblers out there listening to this. And yeah, it's always an absolute pleasure to have you guys listening and Spreading the word in the social. If you want to spread the word further, that's fine. Go find someone who hasn't heard about it and let them know about it because it's always good when other people come on board and go, Oh, I didn't know this existed. And there's loads I now have loads of episodes to catch up on. If you've got anything you want to email, please send an email to hello at NeuroShambles. com with any what the flip moments that you've got or any suggestions for for future episodes. All of your input is gratefully received. I think that's about it. All that remains for me to say is have a nice life.