School “avoidance”: Part 2 - The impact on families and what we can do about it

TRANSCRIPT

Mark
Hello and welcome to episode 59 of Neuroshambles. Thanks again for joining me, Neuroshamblers. As always, it's a treat to have you aboard. Hope you are somehow managing to cope with the inevitable dysregulation caused by this current hot weather. My lot, for the record, are all over the place at the moment, so I'm sure I'm not the only one experiencing it. This week's episode is a continuation of the last one because there was way too much to squeeze into a single episode. So if you haven't heard episode 58, make sure you give it a listen before you come back to this one because we're going to be referring back to some of the points made in that one. and it'll make a bit more sense. It will also explain why my guest suddenly starts banging on about bananas. Anyway, that's enough of the preamble. Let's dab our brows, roll our sleeves up, and jump back into it. Meet the guest. So, given that this is part two of a two-part episode, it's not surprising that this week's guest is exactly the same as last week's guest, but it is always useful to have a quick Recap of the Neuroshambles at play in your household. So, Heidi Mavir, please tell us what neurodiversities you have at play there.

Heidi
All of the major food groups are represented in our house, and there's only two of us. So my son Theo, who is now twenty one, he's Autistic ADHD. He also has Tourette's. And probably dyslexia, although it's not yet formally diagnosed. He was diagnosed when he was 15, and then I was diagnosed About a month after. So it kind of like was one of those domino effect things where you're seeing your kid go through the diagnosis process and you're going, oh, me too, me too, me too. So I'm AuDHD. He's AuDHD with some extra letters too.

Mark
Nice, nice. I don't know if it's useful me recapping what's going on at m in my household. Always good if people haven't heard the Neuroshambles before. I have three neuro different kids, all diagnosed autistic ADHD, but very different profiles. So Jay is thirteen and he has a PDA profile. Otto is eleven, a bit more anxiety based profile. And India is eight. But it's her ninth birthday coming up soon. And she also has a PDA profile.

Heidi
Oh, PDAers.

Mark
Yeah, two PDAers. And then their mum Tam is also diagnosed autistic ADHD, late diagnosed a few years ago. Me, for the record, undiagnosed neurotypical. That's it, I'm sticking with it. Okay, so that is the swift recap of yours and my setup. So let's crack on with part two of this particular episode.

SECTION INTRO
What's the topic of the week?

Mark
Our last episode we focused on defining EBSA and all the other terms it's otherwise known as. including why some of those terms are more problematic than others. So for the record, we're going to be using barriers to attendance as our go to term for that. This episode, we're going to be focusing more on the impact on the parents because that is not insignificant in all of this, and I think it's worth discussing that. And also what we can do if our kids are experiencing barriers to attendance. One of the things that I really wanted to kind of shine a light on is the parental blame. that sometimes can be felt by that. So there was a study that said almost seventy eight percent of parents whose kids were currently affected by school avoidance said their experience had been doubted by school professionals, right? 78% of the school professionals went, nah, he's making it up, get him in. Which is, yeah, that's huge. And it's so infuriating because one of the reasons that we kind of persist with it when if there wasn't that blame, we might go, you know what, let's just have a duvet day. You know, let's just give yourself a little bit of time. Did you experience that parental blame with PO?

Heidi
And actually, I So we have got in my book, I don't know if I mentioned I wrote a book, when we reissued the new edition, there is a section on in the book on parent blood now So there's a piece of there's a piece of research that's like re listed in the book, specifically around parent blame and pathological demand avoidance. Okay. And then there's also a bit around there's a piece of writing from a parent called Megan Robertson around the parent blame experience. Because it is huge for us as a community. It's one thing being worried and frightened and concerned for your child. It's a whole other thing if when you flag that with people who are supposed to help you, you are told it's your fault and you're making it up. Yeah. Horrific. And for those of us who are white, educated, articulate, it's hard enough. For those of us who don't have those privileges, it's doubly hard. And we see time and time and time again parents being told just get them in and parents being told to bring the bring kids in in their pyjamas and being told you're making you know you're making home too comfortable oh that's they're like they I've got a list of of

Mark
Shit that people say that is uniquely unhelpful when they're just like, oh, we don't believe you. So I'm going to give you a few. Just give it a go you know, then just give it a go, just pop in. It's not a c it's not you're not g nipping to the shops. You're asking this child to face something that they've already experienced as unsafe and completely overwhelming. Just give it a go.

Heidi
Or being asked to prove how distressing it is. Okay, well, what we're going to do is we're going to get you to bring them in and then we're going to observe them being really distressed because we're not going to take your word for it. And then when they do that, then what?

Mark
They at that point do they go, oh yeah, fair enough. Yeah, he's an absolute wreck.

Heidi
Maybe you um they were picking up on your anxiety as well.

Mark
Yeah.

Heidi
They're probably playing up a little bit more. And then you'll get the And how are you, mum? Like, fuck off, first of all.

Mark
I am fucking furious is what is how I am.

Heidi
First of all, I love your mum, don't call me mum. Only one person on the planet gets to call me mum and it's not fucking you. Learn my name. I don't call you teacher. I don't call you principal. I've learned your name. You can fucking learn mine. Sorry, it really grinds my gears. Can you tell? Yeah. But you know, all that stuff around They're fine when they get in, you know, like on whose terms? You know, like and and it's that thing of all that matters is the attendance tip on a page in a it's not in a book anymore, is it? But it's on a piece of paper, on a on a document somewhere. They you know, there's there are people within the school system, they don't give a shit if your kid is sat in a corridor and not learning all day, so long as there's a little tick beside their name that says they're in the building.

Mark
I've often wondered about this. Do they get like brownie points for higher attendance?

Heidi
Ofsted mark on attendance. If you don't have over a certain level of attendance, you won't get outstanding. And within the education system, there is proof that attendance equates better outcomes. Across the board, statistically. That makes sense, but not for all kids. And our kids are not average kids and they're outliers. So my child Could have got eleven GCSEs, right? On paper, he failed to get what he was capable of because he only got five.

Mark
Right.

Heidi
And he pulled their numbers down. And the reason he pulled their numbers down was because his attendance wasn't up.

Mark
Right. The reason his attendance wasn't up is because they didn't accommodate his needs. To prevent burnout.

Heidi
And also, fuck that. He got five. Yeah, that's huge. Dude, I'd do this. I'd bite your hand up. He got his college. placement. That's all he needed for his degree that he wanted to do. Not all kids want to go to university, not all kids can go to university, but that's what he wanted and he's loving uni. He didn't need 11 GCSEs for any other reason that you wanted to tick a box that said, We've got 11 GCSEs out of this child. And I had to do a lot of unpicking that for me because as a Neurodivergent kid who was not recognized, who put a lot of emphasis on achievement. I had this whole but he can get 11 GCSEs, why shouldn't he? And the answer to that was because it will probably kill you both.

Mark
Yes. The other thing that drives me nuts is the attendance targets and the and fines, like school fines. For taking your kids out of school. Now, I will say that my kids' school have been amazing I've never even had a whiff of them talking about fines because they understood that Jay was going through a particularly difficult time. We were on great terms with their SENCO. He had an EHCP, which obviously helps as well, I think. But if your child is undiagnosed or you don't have an EHCP And they're facing barriers to attendance. They fine you.

Heidi
I was threatened with fine and prosecution. And I was in a meeting with Theo. and a deputy principal of a Multic Academy Trust turned to Theo and said, Do you want your mum to go to prison, Theo?

Mark
Are you shitting me? What possible outcome was he expecting there?

Heidi
They were expecting him to go No, of course not. He didn't. He burst into tears.

Mark
Yeah, of course, because. Dude, he's already feeling completely overwhelmed and you're no safe person. They were basically going to if you don't come to school, your mum will go to prison. So you've got a choice of going into that Hell hole.

Heidi
You've lost control of the situation as a school leader when you're asking a fourteen year old boy. if he wants his mum to go to prison as a means to try and cajole him into attendance.

Mark
You've lost sight of your own morality at that point of going actually by the tick on my attendance sheet is more important than threatening a child to the point of overwhelm and I suppose

Heidi
I met my MP on Saturday, and he's an ex Maths teacher. And he said to me, well, we do know that attain that attendance equals better attainment. And I said to him, statistically, across the board, if you want your statistics to say that, yes. We also know that kids who can't be in school have significantly poorer life outcomes than other kids. So Whilst I would have loved my kid to be in school, not at the cost of his relationship with me or his mental health. Yes, absolutely. What's the point of having 11 GCSEs if, forgive me, you want to unalive yourself? You know?

Mark
Yeah. So all of this sort of attendance targets and fines and also rewarding full attendance. As well, like so our school tried to do it a different way and going, I'm gradual engines, I'm not being disabled. Is that yeah? So, this there was an email that came around, and again, my school are wicked, like my kids' school are great, I can't speak highly enough of them. But they did send an email that praised: here are all the kids that have 100% attendance this year. It was like, I'm delighted for you. Let's celebrate the fact that they are They can cope in school.

Heidi
Slow hand clap for nothing. And like, you know. Don't get me wrong, it's hard to get kids into school even if they don't have barriers to attendance. And yes. We want to celebrate when children are stretching themselves and challenging themselves. We do. And we see things where kids aren't allowed to go to prom if they're not over a certain amount of attendance, or kids aren't allowed to go to Alton Towers. If they haven't had a full half term of no sanctions. And basically, what we're doing is we're saying, oh, hey, you, ADHDers, or DHD as PDAers, we're just going to punish you for being the person that you are. And that is a pattern that we see throughout the system, and it crushes self-esteem. And then we see that roll through. We know that we have a huge percentage of neurodivergent people in the prison system. That's not accidental, and it's not because by nature neurodivergent people are criminals. No. No, I don't believe that for a second.

Mark
No, no, not at all. Some of the other ridiculous things that people say, again, I can't kind of cover this on another episode, but it's definitely worth repeating for this one, is where they say you need to make home less appealing. My God. It's so ridiculous.

Heidi
That one rule for them and one rule for us. Like, can you imagine if you had a safeguarding referral to social care, and the social workers came to your house and their assessment said The living environment is uncomfortable. Children aren't allowed to, I don't know, enjoy soft furnishings.

Mark
Yeah. Do you know what I mean? Like games console is locked away during the day.

Heidi
Parents have decided to make home less comfortable, so the family sit on deck chairs.

Mark
Yeah, and but it is this notion that the reason that they're not going in is because it's just too lovely at home. And it's like it's not the home that is the issue. It's not too enticing at home. It's just absolutely cripplingly awful for them in the school environment without accommodations. Dr. Lucy Pocock, I spoke to in a previous episode and the Is the Health Care System Broken episode made a really good point that really resonated with me. And she said, if an adult is signed off from work for mental health issues or just signed off from work through stress and anxiety, a doctor would actively tell them to do things that give them comfort.

Heidi
Go home and rest.

Mark
Go home and rest. Do things you enjoy, right? Relax. Why is that not applied to children who aren't able to go into school due to exactly the same reasons? Just stress and overwhelm and expectations that they're not able to meet?

Heidi
By the same token, if you had a job in an office And you were holding on to the door of the office and members other members of your team had to peel your fingers off the door, carry you to your desk, sit you at your desk and turn your computer on for you. Someone might suggest an occupational health referral. And if at the end of a school day, a child was saying to a trusted adult in school. I don't want to go home. I'm frightened at home. I feel sick at home. I don't feel safe at home. Someone would call social services But when a child says those things about school, don't be silly. Don't let them wrap you round their little finger. You're making a rod for your own back there

Mark
Yeah, yeah, or you need to be more resilient.

Heidi
Yeah.

Mark
Is that that one there?

Heidi
If they were my kid, they'd be in school. Dude. Run away, love. I mean, and and I know I know I've talked i i in the book about um the whole gate thing And this was a thing that I didn't even realize was a thing. We had Osenko say to us, just come and touch the gate, and I thought it was just a really weird thing that happened for us When I started speaking about it, I got emails from parents, they lived on that to us, too.

Mark
So, what was that? So, that was to when Theo wasn't able to be in? So I remember from the book they were like, Well, you know, he doesn't have to come all the way in. Just let's get him to come and touch the gate. Let's start by touching the gate.

Heidi
Yeah, which is, I mean, I'm like, all right. But that was the day when I had a real moment when I was like, it went so phenomenally wrong that I was like, what am I doing? How am I standing beside my car with my child, suggesting to him that we go and touch a gate? And I said to him, It's all right, Theo, you can trust me. And he said, I can't though, can I?

Mark
Oh, God, that's crushing, isn't it?

Heidi
And thank fuck that he could say that to me. But when I spoke about that in the book and in other places, parents started emailing me saying, We've been told to touch the gate. Somewhere somebody has gone, if they touch the gate, you can mark them as present.

Mark
Do you think that's what it is?

Heidi
Yeah, I do. And maybe they're like, if they touch the gate, it will prove to them that school is safe. So it's like people who don't know anything about disclosure therapy doing a bit of armchair psychology.

Mark
I talk about this in a recent talk that I did. How to Deal with Judgment: A Survival Guide.

Heidi
If you want to book me for it, available for marriages, funerals, barmitzvahs.

Mark
You know, available if you want to talk to me about coming to deliver that talk, that would be great. But. This misnomer that exposure therapy will work for a child that isn't able to attend school. Because, you know, exposure therapy, if listeners don't know, is it's a legitimate scientific method to that if someone has an aversion to something, let's say snakes Right was the example that I used. If someone has an aversion to snakes, by gradually increasing someone's exposure to snakes, you can then help them get over their phobia of it. You know, it's with Theo and rats, right? Show him a drawing of a rat, then a photo of a rat, then maybe like a rat from a distance, and then in a room with a rat, and then a rat in, you know, until eventually he's holding the rat, magically cured, he's the rat king. So that does work if it's done properly, but that is not going to work for neurodivergent kids in school because their aversion to school is not the building, it's not the fucking gates. Right? It's not just one thing. Their aversion to school is for all those things we listed earlier. It's the noise and the smell and the transitions and the demands. Like it's multifaceted. So expecting your child to be able to just get over it and be more resilient by throwing them into school is basically like throwing Theo into a nest of rats and going, There you go, deal with it. It's like, no, it's you're completely misunderstanding how all consuming

Heidi
This aversion to the thing that you're trying to cure is different as a flipping contraception. Do you know what I mean? It's like. I know it's a pill, but it's not the pill.

Mark
I mean, it looks similar, but it's not going to do the job.

Heidi
You know, we're not addressing the root cause here, you know. My ovaries are still firing on all 12 cylinders. And it's dangerously close to conversion therapy when it's not done by someone who really knows what they're talking about. And conversion therapy is as we know, deeply harmful, often weaponized against marginalized people. And for our neurodivergent kids, if we're in the space of, let's tell you something is safe Put you in an environment where we tell you again that something is safe. You tell us it doesn't feel safe. We tell you that's not true. We tell you to show us that you agree with us that it's safe. It's basically let's

Mark
embed that masking material yeah that's absolutely it isn't it yeah let's all pretend that magically your child is okay and then what happens is kids

Heidi
I have seen this, that thing around the learned helplessness, which is they learn that they won't be heard. They learn that their no means nothing. They learn that no one will advocate for them and no one will support them, and they stop asking. Yeah, which is hard problems. Either verbally or with their behavior. And when our kids stop being able to say no, fuck me, that's dangerous. You know?

Mark
Yeah, you're definitely not teaching them resilience there. That's literally the opposite, isn't it? You're teaching them compliance.

Heidi
Yeah. And we're making them more vulnerable because then we're telling them that consent doesn't matter. And we know that for neurodivergent kids, they're extra vulnerable when it comes to issues around particularly sexual consent. So Yeah. It's not just about can we get them in the classroom. It's a much bigger picture of what message are we sending to our children if we tell them that when they tell us or show us that something is painful, we tell them that they're not in pain, that we don't believe them, and they should just suck it up.

Mark
Yeah, absolutely. One of the consequences of our kids' barriers to attendance, school avoidance, however you want to call it is the impact on the parents because it's massive and I don't think enough people know how big an impact it has on a on a family. So firstly, just sending your kids in, knowing not just that they're not enjoying it, because, you know, sometimes there are things that you could Or say, I'll just give it a go, and they might end up liking it. But you know, we know that our kids, it's not just a case of them not enjoying school, they are just struggling to stay afloat. And you see that when they return home and there's meltdowns and increased aggression and verbal abuse and anger or shutdown.

Heidi
Or you're getting texts from the toilet at lunchtime. When they're saying things like, Mum, please come and get me. I can't, I don't know what to do. Please come and get me. I need you to come and get me. Please, I can't be here.

Mark
Yeah. And we are encouraged to send them in. Because if we don't, there's potentially legal action that could be taken against you or fines. So you try to keep them keep them going right and that is emotionally that's quite hard like if you as a parent if you've ever had to wave your kid off at the school gate, they don't just skip in, they either plod in or they turn back and just have this look. Oh, the look, you know. Oh, we've I I've certainly experienced it with Jay, you know, and that's that's really hard. to deal with. That's just one of the facets of the impact on parents. There's also, obviously, the practical considerations as well. Because we gotta work, right? I've gotta earn money for my family. Obviously, if I didn't, if I was, you know, a millionaire, I didn't have to work. Actually, probably a millionaire wouldn't do it now, would it? the price of money. But if I was a billionaire and I didn't have to do it, I'd be like, dude, come home with me. I'll home educate you. Or we'll we'll learn In other ways, and we'll just hang out, and you won't have all of this. But I can't do that. I have to have a job to be able to afford the mortgage, to be able to look after the rest of their hierarchy of needs, right? So I think. In the early days, it's just like you sort of look the other way because like you've got to do your bit. I'm doing my bit and hoping, just hoping. that it's going to be okay.

Heidi
Yeah.

Mark
And that they'll muddle through.

Heidi
I've got a family that I'm working with at the moment and I'm getting daily texts from the parents saying he's been excluded again. It's kind of become it's not a joke, but it has become a bit of a joke. He's like, guess what? I'm like, oh, have you been and picked him up then? You know what I mean? We're in the process of trying to get him an EHCP, and he's just been diagnosed with ADHD. There is that thing where we all do it. I did it. I know parents all over do it. Where you're like, you gaslight yourself. You can't even trust your own gut on it because we are conditioned to believe that kids Should be in school, must be in school. And if they're not in school, we're failing them, right? And there's no nuance in that conversation. There's no like, except when. You know? Because there is a room for nuance when you're dealing with millions of kids. You know? And I Every single parent I ever speak to, every single one, I can think of no exceptions, and I have helped individually hundreds of families and like collectively thousands of families. I run a community on Facebook. We've got nearly fifteen thousand families in there. Every single parent says to me, I wish I had trusted my gut sooner. I wish I hadn't complied. I wish I had pushed back harder. I wish I had listened when my child told me things. I wish I had said no.

Mark
And it takes so long to get to that point. Because, well, firstly, a lot of these instances Are before you know your child is neurodivergent. Or you kind of know, but you're not they're not diagnosed because the diagnosis process takes forever.

Heidi
And you're probably neurodivergent too, and they're just like you.

Mark
So

Heidi
I mean, I can't answer that.

Mark
Yeah, we've covered that. But there's this sort of you're slow to do it because you don't know for sure whether there's neurodivergency in play. So, you're not in that sort of advocacy mode, I think, at that point, because you're not really sharing it with the outside world.

Heidi
And there's stigma, particularly around autism. There's stigma associated with that label. You know, I talk about how labels. are not a bad thing, they're care instructions in the same way that you wouldn't you know, knowing that something is an Angora jumper means you don't wash it on a high heat, right? My kid's an Angora jumper, you know. And there is a huge amount of stigma. I remember the first time someone said to me, Theo's autistic, isn't he? I was horrified. I was so offended. Really offended. What? No. You know? Like now, I'd be like, yeah, yes. Yeah. But we're seven years down the road. Yeah. You know?

Mark
So I think a lot of parents I'm going to go as far as say all parents send their kids in to school way after the early signs are being shown, just hoping it's going to be okay. because the financial impact of them not being school being in school, because you have to take time off work is enormous. So there are so many parents who have to give up work to accommodate the education of their send kids and maybe not even to educate them, just to be with them while they're you know, where while they have barriers to attendance.

Heidi
Holding down a job when you have to leave the office three or four times a week to go and pick your kid up because They've barricaded themselves into a toilet and no one can get them out. Like employers are like, Yeah, it's not great on the C V, is it?

Mark
You don't, it's not one that you put at the top of the C V. No. May have to take an afternoon off to go and pick up their child in overwhelm and can't.

Heidi
And without notice, and there's no pattern that we've established yet. and I'll be really unreliable. And on the days that I am in work, I'll probably be distracted. I'll probably cry at my desk quite a lot. I'm not fun to be around. I won't come to any of the office parties.

Mark
Yeah, I'm going to be tired and resentful, but I can multitask.

Heidi
I've got excellent interpersonal skills.

Mark
I tried to look into this. There's not a specific national figure for the impact of EBSA, but broadly speaking There was a study in 2023 that found that 41% of Send parents had to give up work completely to fight for their children's educational support. That's just the fighting for the educational support. Almost half of those parents had to reduce their working hours or change their role. So it has a huge impact. So it's no wonder that people who would just struggling day to day anyway, especially in this economic environment, are just hoping that they're kid It's just going to get over this bump, right? What they see is just a bit of reluctance.

Heidi
And you find yourself going, we've had a good day today. That becomes part of your vocabulary. And a good day means your child didn't lock themselves in somewhere, have a meltdown, hit someone. Tell a teacher to fuck off any of those variations, depending on what their presentation is.

Mark
And again, it's rewarding masking, isn't it? Yeah. And it's really hard. And I don't know, you know, it is such a huge emotional, logistical And a financial load for so many parents.

Heidi
And not to mention then the extra strain that puts on Adult to adult relationships. If you've got a co-parenting couple, I know that you can probably speak to this. But if you've got a co-parenting couple, Who are in an intimate relationship together, and you've got a situation where that circle of trust shrinks, and one parent is safe for the child or young person, but the other one isn't as safe. One parent is doing all the heavy lifting and advocating, not because the other parent doesn't care, but because someone's got to bring home the bacon. That drives a wedge between couples. And then layer into that, you've got kids who need to co-sleep to regulate. Like the aspirin would probably be all right in that situation. Do you know what I mean? Like it puts a huge strain on Adult relationships, parent relationships. It breaks families apart.

Mark
Absolutely. As a family that has been broken up. No, we haven't actually. I don't consider us a broken family. So I'm not even going to go down that route because we're we're very alternative, but like we're very much together.

Heidi
Bigger picture, there's always more in the mix. And I see a significant strain put on couples

Mark
Yeah, yeah, yeah, yeah, yeah. And sometimes when I look at my kids in my house and they are authentic and regulated and just fucking bonkers and j just joyously eccentric. I sometimes forget that they're disabled.

Heidi
Yeah.

Mark
Right? I sometimes think they're fine. Like, and they are fine in this context. Right. And sometimes I sort of feel like maybe me doing a whole podcast about neurodiversity and how difficult it is to parent neurodivergent kids Actually, I feel like I'm doing alright with my kids. But then I look at the fact that two of my three kids can't be in a mainstream school. And that I have had to fight Tam and I have had to fight for every single one of our kids to get an EHCP and we've fought for the secondary phase transition to get them into a specialist setting. We've had to have Jay off school, in burnout, not able to attend. We've had to like fight for accommodations for Otto so that he can attend school. And it's like neurotypical parents don't even think about this being a thing. It doesn't even cross their mind that their kid will not be in school between this time and this time. It's not even a thing. Because that's what kids do, which means that they can go to work and do their thing and not have this impact and not have the emotional load and the logistical load of going Fuck, I've got a meeting at three and I've got to go pick up Otto 'cause he's now had a horrible day because there was a school trip, so that his safe person wasn't there for This afternoon, so I've got to go do that. Then I've got to be back in time.

Heidi
I've got a banana in his bag.

Mark
Yeah. Then I've got to get him home and actually find him something that's going to regulate him and keep him out of my office. At home, while I have the like all of this shit, no one with neurotypical kids has to think about And that's when I realized, actually, yeah, it's pretty hard, isn't it?

Heidi
It is hard. And like, without being incredibly depressing, but it would be disingenuous of me not to mention this. We're like We're in the middle of a massive consultation around send reform. Yes. We are going to see if things are going to change. But the reforms are one hundred percent going to move us towards more kids being educated in main screen schools, fewer specialist spaces less specified and direct and bespoke provision, we are going to see the gap widen even further for our kids who struggle to be in mainstream schools. And we're not going to have as many options as we have right now. I've got stuff. Come and find me on socials. I've got stuff that will help you dig into that in more detail. But the point I'm making is that it is hard and it is getting harder. Parenting is hard, full stop. I'm not taking anything away from parents who do not have neurodivergent kids. It's really hard raising kids. Parenting is really tricky. Parenting Neurodivergent Kids, extra extra, extra tricky. Parenting Neurodivergent Kids with barriers to attendance, practically impossible some days.

Mark
Yeah.

Heidi
And our system is already fucking us over, and it's about to bend us over and give us a right good seeing too. So we need to strap in and look after each other. Sorry for my overly sexual language. Shall I say that again?

Mark
I don't think it needed the strap in.

Heidi
It didn't. I probably told you more about me in that sentence than I told you about my family or my professional career. What I wanted to say was: things are already really tricky and they're going to get harder. Pretending things are going to be okay is not going to cut it, even more so as we move forward.

Mark
So as parents of neurodivergent kids who have barriers to attendance currently and are struggling just in the day to day life. Other than because I find myself in this position of going, Yeah, I know that this there's a shit show coming And I know there's a storm brewing, and I don't have the mental capacity to look at how that is going to impact me All I can do is just deal with the day to day and fucking hope that something sorts itself out. obviously that's not enough. But what can we do if our kids experience barriers to attendance? What can we do, Heidi?

Heidi
So practically speaking, there's quite a lot you can do in terms of liaising with school as soon as you realize these. Don't ignore it, don't put it off. ask for conversations, go and meet with the people who can make a difference in school.

Mark
This is the current situation, right? We're not talking about the future

Heidi
Yeah, even going forwards, actually, powers are going to be with schools to make accommodations, and that's changing in the way it happens, but the legal requirement will still be there. that under the Equality Act, our children are entitled to reasonable adjustments. Currently, there's no talk of stripping the Equality Act. I mean, God, the day that happens, I'm moving to Mars. But currently there is a legal responsibility for accommodation to be made for disabled children. So there are practical things you can do. There's some we'll do some signposting. I'll give you some stuff for the show notes, but there's some really good resources and organizations that can give you some signposting around that. I've got a marble room membership for parents and carers who may need that. Out with what you actually do around conversations in school, I think that's secondary. The thing that I have seen work For families and how we define what success looks like changes, right? So we no longer define success for our children or young people based on how many GCSEs they get. We decide what success looks like for us as a family. For some of us, it might be GCSEs. And we stop, turn round, swim like mad against the tide until it becomes easier as the tide turns and we prioritize our relationships with our kids and ours and their mental health.

Mark
Yes, absolutely.

Heidi
And that comes that trumps everything else. And you get uncomfortably comfortable with saying things like, have some phrases. No, I'm sorry, that won't work for us.

Mark
Yes.

Heidi
Or I appreciate what you're suggesting. What else can you offer? Or just know we won't be doing that. It's hard. It is at first. Yeah, especially if you're someone who's used to people pleasing. It gets easier And then you tip over into the territory where I live where I just have to try and stop myself from telling people to fuck right off.

Mark
I mean, I've had a more gentle kind of uh pathway into this. And I think possibly because the school that my kids are at have been a bit more neurodivergent friendly and a bit more understanding. But the importance of advocating for our kids' needs, whether they're diagnosed or not, is Massive. It's massive. And we did that to a degree with Jay, but it was harder to accommodate his needs as well. I think initially, because he's got PDA and You know, I'm not going to ask them to level the school hierarchy. But with Otto, we've had a much more interactive experience with the school when he was in Massive overwhelm every time he came out of school.

Heidi
If you've got more than one kid, the first one is a little bit of a practice run.

Mark
Yeah, he was. Yeah, yeah, basically.

Heidi
What I would say is that Just on that, prioritizing your relationship with your child and their mental well-being is never the wrong decision, ever, ever, ever. That's never wrong. And you will need a community. You will need other parents who get it. So whether that's Neuroshamblers listeners or whether it's Online communities like mine. If you search Your Child Is Not Broken on Facebook, you'll find my community. It's a free Facebook community, or whether it's places like Not Fine in School or Define Fine or, you know, all of these places. Community will save you. It will cushion you. Being in a space with other parents and carers who can go, Yeah, me too. You don't have to explain why your kids aren't in school to every single day.

Mark
And who have navigated that as well? That's the important one. People out the other side want to actually help you through.

Heidi
And who will do that? Who will say to you, you are allowed to say no, you are allowed to push back. It is right and proper that you are giving yourself a shit ton of compassion around this. This is not your fault. You are not making it up. You haven't done anything wrong. Your child is disabled. That's not a dirty word. We've got your back. That's what you need to get through this.

Mark
Yes, absolutely. So Otto and Jay have barriers to attendance. They are as Tam described once, which I I I love the phrase. Tam just went Our kids are not school-shaped, are they?

Heidi
School-shaped, I love that, yeah.

Mark
Like, no, they're not school-shaped. In the same way that I wasn't built for speed. So, Jay got to the point of burnout. we missed the signs, we didn't advocate early enough. Otto is has a more anxious profile. It was very evident when he was s struggling. So and we'd already kind of been through and built that relationship with the Senco. So when it came to him, we were able to go this is what he needs. And we were really clear in his EHCP, but also following up with the SENCO and telling the school what he needs. So Otto isn't able to be in a classroom For seventy five percent of the time, I would say, but he doesn't miss school. He actually enjoys going to school. He's not necessarily doing the learning But I wanted to highlight the benefits of accommodating for your kid and collaborating with your school and having a school that gets it is that they can still be in school. So with Otto, he turns up. He can go in ten minutes early, so he's not having to be in the playground. That's fine. He goes straight into the library. He sits there.

Heidi
He doesn't thank God for libraries.

Mark
He sits there in the library, and he's got a learning support teacher who is Phenomenal, she is absolutely wonderful, and they've got this great relationship, and she is a safe person to him. That's really important.

Heidi
He's in a specialist, right?

Mark
No, this is a mainstream primary. Okay, this wasn't in place until we started going. Here's how neurodiversity presents in him. This is what would make things easy for him. Can you do that? And the school. have been amazing and have done that. So then he will go and spend a bit of time in the classroom. If he's feeling overwhelmed, he will then go back to the library. He'll be pulled out of class by his learning support assistant. They'll go and play football for a little bit. They'll do a few few small group sessions. He he loves sport, so he now assists the PE teacher for classes for the younger kids. So he's doing stuff constantly. He's not just like a corridor kid. he's not engaging in the the learning so much, but he enjoys being in school and his anxiety and his needs are accommodated. We then went to the school towards the end of the year, so we noticed that his he was sort of falling behind academically and said, I noticed he's falling behind academically. What can we do? They didn't really have many answers. I was like, so I said, I want to get a one-to-one tutor for him out of his EHCP. And they were like, oh, we don't really know any. I was like, leave it to me. So I went and I spoke to a bunch of tutors. I found this amazing person. And went, can you come into school and do one-to-one tuition with Otto? And it was like, no, I'm not going to do that. I'm neurodivergent myself. And I.

Heidi
Don't send me into a school.

Mark
Yeah, it was partly that. It was like, I know. That I am not going to get the best out of Otto doing one-to-one in the school environment, he already finds overwhelming, right? I'll do it at home. So then I was like, that is yes, that's perfect. I'd not thought about that. Brilliant. So he now spends two hours a week one-to-one tuition with Otto. And the first session, I witnessed the one-to-one tuition and the impact that it had on Otto's self-esteem because he's got an Audi HD tutor who gets it. He's completely accommodating and understands it. And by the end of the session, he was like, This kid's freaking brilliant at maths.

Heidi
Because I know that kids don't just need to be taught. They need to be given the opportunity to show people that they are learning and they have not been given that opportunity in a mainstream or a classroom environment. And it's a real miss. Like, I saw this with Theo. We had a tutor funded through his EHCP. I mean, like, these are like, this is like gold star stuff, right? Like, this was what we'd want for all children if we could. And Those of us who have had it, I think we don't take it for granted. When I saw what it looked like when he was getting that cycle of feedback. He flew you know, because he could answer a million questions a session and not get told off to keep putting his hand up. Ask a million questions. I remember in an RS class once, an RS teacher said to him to make him like not interrupt the class all the time, we're going to watch a video about nuns, Theo. Write down all the questions that you've got. And it was an eight and a half minute video about nuns, and he wrote down 27 questions, including things like, Where do these nuns get their shoes from? Do they all have the same walking stick? Do any of these nuns have a tattoo?

Mark
You know, like, I mean, not all valid questions, but not all pertinent to the entire class.

Heidi
Probably not pertinent the whole class needs to learn, right? But for him, his processing means that his brain is asking all these questions, filling in all these gaps. He needs those things answered so that he can then actually learn what the thing is that the teacher is trying to teach him.

Mark
And that's the thing with Otto, I've seen him just his self esteem grow.

Heidi
Yes.

Mark
And he loves doing maths now because he realized after session one His mental calculation is amazing. He doesn't get that in school because he's not given the opportunity to do that. Not a fault of the school, but just because he's not able to be in the classroom. So. fighting for the right accommodations and being really clear and understanding your child's neurotype and being as clear as you can about what they need and working with the Senco and finding a school that can potentially accommodate that or being lucky enough to have a school that has the capacity to accommodate that has meant that Otto is still in school. And without those accommodations There is no way he would have been burnt out by now. I know that for a fact. Like, there was one week where there was a lot going on, and two of the three of his safe people were ill that week. and the other one had to go on a school trip, and Otto was just beside himself with anxiety. He couldn't handle it. He was asking so many questions about what the day looked like because it wasn't being scaffolded for him. he said the people that he would go to weren't there and he was up like in the middle of the night just in absolute panic 'cause he didn't know what it was going to look like. So, in the end, we just kept him at home. But that's what it looks like if the accommodations are suddenly whisked away.

Heidi
Yep, you know. I think it's also worth a mention that for lots of our kids particularly PDAs, learning doesn't look like what we all think learning looks like. You know, like and sometimes like it's extra heavy lifting for parents But I've got a kid who is obsessed with animals. That means that every time we go anywhere, we go to the zoo. Right. We go on ho we went on holiday to Marrakech. We had to go to the aquarium. Right.

Mark
Isn't that why everyone goes to Marrakech?

Heidi
Right. Um we've also been to the aquarium in Dubrovnik. You know what I mean? Like, it's just so I'll say, oh, Theo, we should go on holiday to this place. Oh, there's a zoo, it's only an hour on the train.

Mark
That's all it takes, right? If he was like, Look, I you find where you want to go, and as long as it's got a zoo, he's in.

Heidi
And I'm quite fortunate that he has managed to find a career pathway for that. I can tell you confidently that Theo is going to be one of those people that works in a zoo education team that is going to make a huge difference to kids who come to the zoo and sit in a classroom and learn from him. And he's going to model to other neurodivergent kids in that room what it looks like to Do a job you love.

Mark
Oh, can I pair him up with India? Because she's obsessed with animals. Oh my god. She wants to be a vet or a zoologist.

Heidi
Right. You always wanted to be a zookeeper. Like and people will be like, ooh, you know, like he's not going to be a zookeeper, he wants to work in education now, but like he runs his own forest school over the summer for some kids.

Mark
Yeah, amazing.

Heidi
No, like that is not a traditional career path. No.

Mark
You know? But it's really important for. neuroshamblers, and I include myself in that, to know that you can have a child who has barriers to attendance, that experiences deep burnout. and can thrive in the right environment with the right degree of accommodations and the right degree of patience

Heidi
And it's also important to recognize that for some of our neurodivergent families in our community, their children and young people may never work or live independently, and that does not mean that they're less valuable humans.

Mark
No.

Heidi
You know? Like we're not measuring success based on whether you pay tax or not. We're measuring success based on the level of joy and connection you've got in your life. And that's the shift, right? That's going back to that, picking what your priorities are and making sure that your decisions are led by those priorities. It'll be different for every household. But we you know, we decided, and myself and Theo, through conversations, that if at uni he gets pulled up on attendance, we just ignore it. He's getting distinctions. So what if he's not got good attendance? Yeah. Big whoop. Do you know what I mean? Like, we don't even engage in those conversations. He gets emails saying we've noticed you've not been to this lecture, he deletes it. You know, we don't even engage.

Mark
Yeah, I mean, it's something that I've said multiple times on Neuroshambles, but the shift for me was not being focused on my kids' academic achievements at school. The primary objective for Tam and I for my kids' school education in inverted commas is that they get through the other side of it without any significant impact on their mental health. And if we can do that, that's way more important than any qualifications that they can get.

Heidi
And I genuinely believe we're raising a generation of kids who have such levels of self-awareness and emotional maturity and self-advocacy skills that Other children and young people, some adults, don't even have, you know? Like we're breaking that cycle. We're raising this little community of like right on lefties who know how to speak up for themselves. We're creating monsters in the best way possible. Leo called me today and said, I don't have enough ID to register for my postal vote, so you're going to have to come and pick me up so I can come home and vote. I'm like, really? He's like, yes. I was like, well, I'll tell you what, Theo, if you can't come home, I'll vote and I'll vote for what you would have voted for. This is for local elections. Yeah. And his reply to me was, Well, if it's not Green Mum, we have to have a conversation, right? So, like, he's not going to go and work in a and there's nothing wrong with this, but he's not going to go and work in an office. or a factory, he's probably going to set up his own business, he's probably not going to be in a job that is high touch adult contact, he's going to work with kids, right? And that's what success looks like for him.

Mark
Yeah, exactly. It's lovely to see that he's he's found his way out of he's like my little poster boy for what happens when you go late.

Heidi
It's lovely, it's lovely, and we are lucky and I want to acknowledge that we are incredibly privileged and Success looks like that for him, and I'm really pleased that we've been able to achieve that. And we're not going to leave other people behind who are not. We do have families who don't emerge from those crises, and we have to advocate for them too.

Mark
Yeah.

Heidi
Yeah.

Mark
Mhm. One of the things I wanted to talk about, because I'm sure that there are going to be a lot of people at home listening to this will have listened to part one and thought, my kids are showing the signs of experiencing barriers to attendance. And realistically, they probably want to just take him out of school and just give them that time, give him a little bit of space to regulate again. and reduce some of the anxiety around school, even if it's temporary. And there is a fear which is not unfounded that there's going to be issues with the school. There people get fined for taking their kids out of school, which is obviously messed up, which we've discussed, but it is a a legitimate concern for parents doing that. So I wanted to really discuss what the options are for parents if they wanted to do that, what the potential repercussions are. and what their rights are as well, I guess.

Heidi
So this is an interesting one. We're recording this in June twenty twenty six, and the Children's Wellbeing Bill has just been passed through Parliament. So it's changed a bit.

Mark
Okay.

Heidi
Because historically actually, legally, we do still all have a right, a legal right to home educate our children if we choose. Right. And so I'm not saying that everyone who has a child who has barriers to attendance wants to home educate, not by any stretch of the imagination. My advice always used to be, look, you've got the option, you can deregister and you can re-register any time you want. And you know, I had a webinar in my membership, I still have got it sitting in my membership, which talked people through what their options were. And there were kind of no restrictions on that, aside from if you were in a special school, so if you had an EHCP and your child attended a special school, you had to not get permission, but you had to inform the headteacher that you intended to deregister. And that had to be kind of like signed off by them, agreed with them, right? Historically, that was the situation. So, if you had a child in mainstream, regardless of whether you had an EHCP or not, you could deregister and you could do that. Like on the morning you decided to do it, you could send an email. You didn't have to give any notice. You could pull them out of school. And you could do that for as long or as short as you wanted to. You have a legal responsibility when you're home educating to provide a suitable education for your child or young person. And different local authorities Historically, we have always had different setups. Some LAs check very closely, some want parents and carers to provide timetables and a termly outline of what's happening. And some LAs have got lots of home educating families and they just let them get on with it. And it was always a bit of a little bit of a postcode lottery, but we always had that legal right to be able to home educate if we wanted to. That kind of changed with the Children's Wellbeing Bill. Right, okay. And the main way that it's changed is that there is a big push from the government and Department for Education to reduce persistent absenteeism and to reduce the amount of people who are choosing to home educate. So because of that, there are now extra Hoops to jump through if you choose to deregister your child. Now, it doesn't mean that you don't still have the right to home educate, you do, but depending on your situation, it's not as straightforward as it used to be. You used to be able to just send her an email to the head and go, I'm off. Right. Now, if you still applies if you're in a special school, you do need sign off from the principal or the head. In a mainstream school, if you have an EHCP, you need to run it past the local authority and the school. You can't just say I'm deregistering.

Mark
Right.

Heidi
And if your family have any social work involvement, it has to go through a panel to have it agreed.

Mark
Right. Okay. Is that to make sure that the environment that they're going to spend most of their time in during the day is actually fit for them being that?

Heidi
Allegedly, that's what that's there for. Yeah. I mean like, yes, officially, it's a safeguarding backstop because we do know that there have been cases where children have been deregistered from school and they have been subject to Horrific abuse at home, and because they have not been known to the local authority and they haven't been checked on, awful things have happened. Right? I'm thinking about Victoria Colimbe, and you know, there are other cases, however. There is no evidence that home educating is in itself a safeguarding concern, and there's certainly no evidence that registering your child is a safeguarding concern.

Mark
Yes, but that's why social services are involved.

Heidi
Yeah, so it's a little bit trickier than it used to be. All that being said, you do still have a legal right to deregister if you wish and to home educate if you wish. The additional thing that's come in with the Children's Wellbeing Bill is that if you do choose to home educate or if you do deregister, the local authority can take action against you. and have an attendance order made through court, which basically means you have to have your child in school. That's new. And that didn't used to happen. Now we're hoping that that will be in extreme cases and cases where there is a case for safeguarding concerns or perhaps you've got a child or young person who has particular special educational needs that cannot be met in a home education environment. And arguably, they should be supported in a specialist environment.

Mark
Yes. The driver for this should be the concern for the child's education, not for the school's attendance figures. which is obviously the concern that you're implying.

Heidi
Yeah, you know, I very firmly sit in the camp of if it was so dangerous for us all to have our children at home with us Why are you not checking on us every other day over the six weeks of the summer holidays? Yeah. You know? Yeah, yeah, yeah. Are you perfectly happy for us to do our own thing for six weeks every summer? But if our kids are out of school for a couple of weeks, you're freaking out and you're knocking on our doors, what's that about? And I'm not saying that it's not important to safeguard children because obviously it is. And I have seen families who have fallen foul of. the attendance at all costs approach. What I would say is it's always worth getting some advice. Come and get in our free Facebook group and we'll help you over there. But also which Facebook group is that? My Facebook group is called Your Child Is Not Broken.

Mark
Okay.

Heidi
I wrote a book I don't know if I mentioned it.

Mark
I'll put a link in the show notes there.

Heidi
Yeah. So we have an amazing community of like 13,500 families, all of whom really know their way around this stuff. Really generous with their advice. And we've also got professionals in there who will be able to help you if you're unsure how to approach it. Regardless of that, before you even get to that step, my advice is still the same. Your child has a legal right to a suitable full-time education. If they are enrolled at a school or a college and they are not able to attend and they are not getting a full-time education, you are entitled under a Section nineteen request to your local authority to make a request for suitable full time education. And that would usually be alternative provision or similar. And so if you're getting like pressure from school, the best way to approach it is to say I'd like some Section nineteen provision because that should trigger a consideration of alternative provision.

Mark
Right.

Heidi
Another thing to consider as well. Is that it's about how you record those absences. So when you're calling school to let them know that your child is not well enough to attend school, that's what you're saying. They're not well enough, please code them under code I for illness. Mental illness, distress, anxiety is all illness, code I for illness. And do check how school are coding your absences because if they're coding it as unauthorized, that's when you can slip into the area of starting to get threatened with fines and prosecutions.

Mark
I've actually had the Jay School call up and ask me to kind of clarify ways off. And we said it works EBSA and they're like, Okay, that's good. They they kind of want it to be it's a it's a specialist provision though, but they want it to be EBSA because it just

Heidi
you know, is yeah, it's more understandable in that scenario. They need to clarify. You need to clarify. And you might get pushback. The other thing that I do often I do always say to parents is We sometimes we we got this a lot more historically. I think there's more understanding of EBSA now, so we're not getting it as much, but it still does still happen where you've got a family and their child is too unwell to attend and they're calling school and school are saying We need a doctor's note, or we need a note from a clinician to be able to sign them off. You're not actually asking them to sign them off, you're actually asking them to record them as too unwell to attend under code I. And there's sometimes you can get kind of A little bit flummoxed by some of the language because if they're starting to talk about having them signed off, that's a different code. And it's when children are considered too unwell to attend and they would actually fall under hospital schooling. because they'd need to be under an alternative provision. But regardless of that, what I always say to parents and carers is get yourself to the doctor. We have got a template for this in my free group. Get yourself to the doctor, explain to the doctor what's going on. Explain to the doctor that you know that they can't sign them off, you're not asking them to sign them off, but you would like a letter to say that you've seen them in clinic. That it's been explained to the doctor that they're experiencing anxiety and that you would like the school to make reasonable adjustments for that child in the circumstances.

Mark
Right, so then if they do ask for that evidence, having that doctor's letter on record.

Heidi
Just gives you a little bit more, what's the word? I was going to say ammunition, but that sounds quite a bit.

Mark
Leverage, maybe.

Heidi
Yeah. Because, you know. Believe it or not, parents' word doesn't really count for much in these situations. No, no, no, no. It's ridiculous. But you know, and sometimes you'll have to pay for a doctor's letter. And people will say, My doctor wants to charge me thirty quid, I might pay the thirty quid. that letter will be worth its weight in gold. Because if you've got a letter from a doctor saying they've seen that child in clinic, they are presenting as anxious, they do need reasonable adjustments they're going to find it harder not to code it as code I.

Mark
Yeah.

Heidi
So just kind of giving making it as easy as possible for people to do what you need them to do. In line with the legislation, which is that they should be coding eye for illness.

Mark
Yeah. This is in situations where you have a school that are particularly unhelpful, I guess. If you've got a good one, like our school were great, never had to, you know, obviously said that they're off for anxiety or EBSA and they never really question that or push back on that. But I do hear horror stories of A lot of schools out there, and I'm sure you come across it all the time in your group of schools that don't believe the parents and insist that the child comes in.

Heidi
I think it's even not a case of don't believe. I think it's I think in special schools, it's more expected. Attendance levels generally are lower in special schools because I know that kids in special schools have generally more complex situations going on, more complex setups, more complex profiles. possibly more likely to experience EBSA. But in mainstreams, and I hate to say it, but particularly in academies, you'll get that there's a policy across the trust. And there's not much wriggle room. So it's just really preparing yourself for that, but also knowing that legally they should be coding under code I for illness. And if your child is off school for any length of time, and it used to be written in the accompanying guidance that it was 15 days They actually changed the wording the last time they released the guidance and it's no longer got a day limit on it. But if your child is missing school, they are entitled to suitable full-time alternative provision through section nineteen, and that's the thing to be asking for.

Mark
Right. Okay. So if If you want to deregister, you can, and you can re-register if you want to as well. And obviously, you'll need to inform the relevant authorities.

Heidi
Depending on whether you've got a EHCP and whether you've got a social worker and all that.

Mark
But if you find that your child is just having just hit a wall and you think they would benefit from just a bit of time off school to see how they do with that. then you register it as I for illness or EBSA or whatever that is and say very clearly that's the reason. Get your GP to sign a letter to just verify that. And then But just give your child some space and some time and hope that they that it's enough. I mean, with Jay, uh well, one of the things that really helped Jay was a reduced timetable. So it wasn't he wasn't off all the time. It was basically certainly in the early days of being in his specialist provision saying, right, he's going to be in half days for the First bit of it, and they were really accommodating with that because they get it, and because we've explained that he'd got burnout, and so that was really useful. We weren't going right back into school again, you know. And and it was still very, very difficult for him to go in, but knowing that he was in for half a day and he was going to come home Home was really helpful. Yeah. In a mainstream, how possible is that to kind of return to the house?

Heidi
I mean, it is possible, and it's not uncommon. Part-time timetables are supposed to be an accommodation that are a temporary accommodation. That's the deal. So if you've got a child or young person who is experiencing EBSA for a particular if there's if there's a particular circumstance or trigger. So maybe they've been unwell for a length of time and you're trying to get them. Back into a routine, or perhaps there's been a bereavement, or something has happened that you can kind of put your finger on, that actually needs some time to recover, and then we do expect they will be able to re-engage properly in inverted Commas, then a reduced timetable can be super helpful for that kind of like for what you'd have in a regular job, I guess. If you know when you had like a staggered return or a phased return, what I do see sometimes is part-time timetables using are being used as a bit of a sticking plaster, which doesn't help anyone in the long run. A school can't impose a part-time timetable on you. It's got to be done in collaboration with the family. They can't make you do one. But it is worth asking if you think it's something your child or young person would benefit from. It's worth asking the SENCO or the principal, whoever is in charge of. that stuff. It depends from school to school. It's usually the SENCO, if that's a possibility. And also making sure that, that part time table timetable is designed to work for your child rather than designed to work for the school. Because some schools will give you a part time timetable, but you've got to be in until one o'clock. And the reason they do that is because they want the double mark on the attendance register. They're massaging their attendance figures.

Mark
Yep. And then if lunch time is an issue

Heidi
Whereas if in reality it would be better for your child to go home at twelve because then they can have their lunch at home. Make sure that you're doing it to work for your child or young person and just Be ready to be like, this is what we need. But, you know, they shouldn't refuse a part-time timetable. And they can be super helpful when they're used as part of a package of, let's look at what else we need to do to make this work for them. You know, if a child only needs a bit of time, then great. But nine times out of ten, a child is experiencing episode or it has barriers to attendance. It's not just that they need a bit of recovery time, there's usually more going on.

Mark
Absolutely.

Heidi
They'll need other accommodations. They'll need. maybe a hall pass or somewhere quiet to eat their lunch or a member of staff to check in with them or a buddy or you know other other accommodations that that's going to make school more school shaped for them. But yes, a part-time timetable is an option. And the other thing that sometimes happens, again, in academies, more than a few Oh sorry, I said I'm gonna say sounds like I'm really anti-academies. I am really anti-academies, I'm sorry. For the record, I think the academisation of our education system is the is the Final straw that's going to break the back of the anyway, whatever, don't get me started. So don't get me started, it's a double episode. But yeah, but often you'll see Mainly, it happens in academies because it's easier to do an offer of a managed move. So they'll move you from one school to another school. And if it's in an academy trust, it's easier to do that within the group, obviously. Now, sometimes a child or a young person. would benefit from a fresh start, especially if there's been an issue with, for example, bullying or a breakdown of peer group or if there's so much distress attached to being in that particular environment and actually what they just need is a new start. And it is important that if your child has experienced barriers to attendance in one setting, that you know what that wars down to or that you have an idea of what you might need to put in place for them if they do take on a managed move. Because moving to another school can be great if the other school is, for example, a smaller cohort, if they've got the right support in place, if they've got staff that they're going to be able to get to know, if they've got a way of building some new peer connections. But just whacking a kid in another school and giving them one day of transition and then expecting them to get on with it is not the right answer for most of our kids who have viruses.

Mark
Especially a neurodivergent child. We had that. It was a disaster. An absolute disaster. Because you're being asked to Transition to an entirely different school. Now, like day-to-day transitions in a school they're familiar with is difficult enough, but I can imagine the transition to an entirely different school.

Heidi
I've seen it work when it's been really well scaffolded, you know, when there's been a really clear understanding of what that young person needed. Tends to happen more in secondary schools. It can often be a suitable solution for a child or a young person who has experienced bullying. Like that can be a really you know, removing them from that environment. Not that you should ever have to do that because actually it's the bullies that should be dealt with. But some of our kids, if they've experienced bullying in a setting, they just can't be in that setting anymore. There's too much And let's be honest, our neurodivergent kids are more prone to being bullied than their neurotypical peers. So I have seen it work with really heavy scaffolding, but for us, it was a pure disaster. And The last time that Theo ever stepped foot inside a school was the second day of a managed move when there was no one there to meet him at the gate.

Mark
It's the basics, guys.

Heidi
Come on, the wheels came off.

Mark
Jesus.

Heidi
End of.

Mark
Yeah. So there are there are options if you want to.

Heidi
Yeah, I sound like I'm being really ante, aren't I? But I think it's really important because I think it's The key for me in this situation is that parents need to know what they're facing and they need to have the information they need to make the decisions that they need to make. You know, and there is a genuine fear because there is a genuine risk of the likes of the threats of fines and prosecution. There are very few cases of it actually if it does go to to being in front of a judge where a parent is fined or prosecuted. Having said that, the threat of it is very real. And there are a lot of cases that do end up in court.

Mark
And no one needs the stress of having to.

Heidi
No, and generally the advice is from people who are better at this stuff than I am, this particular bit of it than I am, is if you can face it, go to court, tell the judge what's going on and the judge will go, This is ridiculous. Why is this even in front of me? But the pressure of that is not something that all of us can take on, especially when we've got a child that's too unwell to be in school. So for me, it's always about. Know what you might have thrown at you. If you go into school and you say, kids got EBSA, and they go, great, we've got an EBSA pathway, we can help you with that, then fab. But if you are one of the people who goes to school and says, kids got EBSA, and they go, we need a doctor's letter, then you know how you know how to approach it. Do you know what I mean? Or if they say, we're not going to code it for Code I, you've got a little bit more you know, a few more quivers in your bow.

Mark
Yeah.

Heidi
Yeah.

Mark
Arrows in your bow. Arrows in your quiver. Quivers in your bow. It is worth saying that not all of our kids Should be in school. That's overlooked, right? There's this constant, like, oh, which school are they going to go to? Where are they going to go? How do we get them to go into school? You know what? Some kids just can't thrive in that environment because the barriers to attendance are just too big. And there are too many of them And that's where you look at alternative packages like EO test packages. I haven't really got the time to go into that. And I again, I think that warrants its own episode. EOTAS being education other than at school. Is that right?

Heidi
EOTAS, education otherwise than at school. EOTIS, education otherwise than in school. and EOTISC education otherwise than in school or college.

Mark
Yes. So all of those things that you know that this is this is packages for people who are home educating their kids or, you know, having alternative provision outside of the school environment. We will have a separate episode on that at some point. But I know that we've been really focusing on school avoidance, but actually opting out is an option. Deregistering is an option. And sometimes Who knows what's going to happen? But yeah, let's not. But yeah, it is something that is worth looking at if it becomes too much.

Heidi
And learning doesn't just happen in school. You know, like I've got a family in my community, and they've got a young person who's a PDA. I think she's nine now. She won't tell you she's nine, she's four, because she won't count past four. PDA's got a PDA, right? And she has never. managed a day in school. All of her learning is interest-based and play-based learning. There's a lot of animal provision in her package. She spends a lot of time around horses. her tutor's teacher on horseback. Like, she it's incredible. And there's been lots of conversations about, oh, but what how what will happen? And I'm not saying that all kids need to learn to read, but she's taught herself to read.

Mark
Okay.

Heidi
And she's done that by watching YouTube with subtitles on. So learning isn't learning different ways. She learned to read and write because she wanted to write a card for her mum for her birthday. So she took it upon herself to teach herself to read and write, outside of the provision that the tutors were making for her. And one day she just turned up with a birthday card. And it was all backwards 'cause she's dyslexic, but it said happy birthday, mum with love from and then the Chelsea.

Mark
Fuck, can you imagine being the mum that received that card?

Heidi
I know. And her special interests are amazing. Horses, lions. Ian Beale from EastEnders and uh Henry VIII. So all of a lot of her learning is embedded through those and she's a freaking incred she's one of my favorite humans. She's an incredible child.

Mark
Amazing.

Heidi
Incredible. So, yeah, learning doesn't just happen in school.

SECTION INTRO
It's not all rubbish.

Mark
Okay, we're going to look at some of the positives now because, you know, obviously. barriers to attendance are uniquely traumatic for parents of neurodivergent kids. It's a really difficult thing to navigate in terms of the emotional and the logistical and the financial impacts of that. But Looking on the bright side, as I like to do in this section, some schools and Senco's are incredibly good at accommodating neurodivergent kids. So my kids current primary school for one. And there is the possibility that if you can voice the accommodations they need and identify the accommodations they need, and crucially, it doesn't cost them too much money If you can do that side of things, you know, getting them to be able to leave school by the main office rather than the playground, which is overwhelming, is a free accommodation, but one that actually makes a big impact to my children. Huge difference. So that kind of thing, then that reduces their dysregulation and their overwhelm. And we're seeing that actually Otto is happy going into school at the moment, touchward. The other thing I would shine a light on is specialist settings, because Jay is now in a specialist provision and we fought very hard, as any parent of neurodivergent kids has to get their kids in a specialist secondary provision. But now he's there, the difference in him since he's been there is has been enormous. If he had been in a mainstream secondary school, I absolutely guarantee he would have been expelled. Yeah. He would have he would have bounced from school to school. He would have Been told he was failing, he would have been disciplined, and it would just have been horrendous for his mental health. We fought to get him to specialist provision, the specialist provision he's in at the moment. is brilliant. It's set up for autistic kids who don't have learning difficulties, just that they're not school shaped, right? That should be on the school's school crest actually. For kids who are not school shaped. For the benefit of Neuroshambles listeners. Heidi's just pulled an amazing face. That's my not school shaped face. It's very much what Jay looks like. But. Jay in his first few weeks at that school said some fucking awful things to his teachers. Some horrendous things. He flipped over tables All of that would have been massively problematic in a mainstream school. He would have started down that trajectory that I think so many undiagnosed neurodivergent kids in secondary schools Would have faced, and it would, you know, it would have been horrendous. Fortunately, he's in a place that has the training and the understanding about his neurotype to know how to de-escalate things and how to understand where that behavior was coming from. And they were very, very patient, and he had some wonderful teachers. And he is a different child there now He comes back from school every day at the moment, 'cause it's spring, with a bunch of flowers he's picked on the way to give to me Like, dude, who is this child?

Heidi
What an angel. That's adorable.

Mark
It's adorable. He just sort of goes off to I don't have any of the things that we were looking at. earlier about the difficulties getting out of bed or getting into school. He just goes into school.

Heidi
His kids do well when they can do well.

Mark
Exactly. It's taken a while to get there. Like it's been at least you know, a year of this because he's been out uh navigating through burnout. But if they are in an environment that can accommodate their needs, that and that understands how to teach these kids They can thrive, and this is where I feel we are with Jay at the moment. So, I just wanted to kind of give a huge positive shout-out for that.

Heidi
I love that I love that for him. That's what we want, right? We want more of that. I don't believe that there are any teachers that go into teaching because they don't like kids I think there are very few terrible teachers. I mean, they move around a lot, but I think, generally speaking, the problem is not the individuals in the system, it's the system at large. And when you find either a setting or a person or a relationship that works for your kid, that's the difference. Like that's that's probably what got me through school. I had an English teacher who I adored.

Mark
Yeah.

Heidi
You know? And we all have stories about the teacher that made the difference.

Mark
The same person, right?

Heidi
Yeah. And that's what we need to be able to encourage our children to trust that there are people who we can't always promise them they won't move on and there won't be supply and that kind of stuff. But when you find a person in any environment that is safe. Like it's the difference. It's a massive difference. Relational safety is huge for our new environment.

SECTION INTRO
Neurodiversity Champions

Mark
Okay, neurodiversity champions now. These are the people or organizations who are doing marvelous things in the world of neurodiversity. So have you got any neurodiversity champions you always do. I don't know why I ask you. You definitely. I am confident that you have some neurodiversity champions for us, Heidi. So who have you got?

Heidi
So I'm going to give you two. The first one is Alice at SEND Advocacy Limited. So Alice is a rare, rare breed of a send parent A neurodivergent adult and a qualified lawyer.

Mark
Oh, wow.

Heidi
Yeah.

Mark
She's a great person to have on your team.

Heidi
Awesome. And so she is she now works exclusively with Send Families as a consultant. She's got lots of experience of SEND Tribunal and EHCPs. So if you need help with that particularly, she's my go to for when I don't know something, which happens quite a lot. She's the person. I've got two people that are in my WhatsApp. I've got a social worker who is like my. Let me go to, I can't name her because she's a working social worker.

Mark
Okay.

Heidi
She's working advice off the record. You've got in my Information, and then I've got Alice. And if I've ever got a question about the SEN Tribunal or EHCPs or working documents or LA's trying to pull a fast one. Alice is the person that I go to, and she does one-to-one work, and she also has a programme for parents and carers to understand the Sen tribunal system, specifically how to prep for tribunal if you haven't got legal rep. She's amazing and I really, really rate her.

Mark
So she's bilingual, basically. She speaks legalese and human.

Heidi
Legalese and human. Yeah. So you'll find her at SEND Advocacy Limited. Her name is Alice.

Mark
Great.

Heidi
Tell her I send you to the improvement.

Mark
Awesome. Thanks for that one. Who else have you got?

Heidi
And then the others. Totally different, but very much of the same magical personality club. Is Martha and Jen are Audhacious humans So Martha and Jen are both ex-educators. One of them is from a mainstream background. The other is from a Montessori background. And they have both got PDA kids. And they both left education to care for their PDAers who weren't able to be in school. Now they support other parents and carers who want to unschool. who know they need to opt out of the school system because they know the school system is not the right shape, form, environment for their kids, mainly PDA kids. They do that in two ways. They run an in-person club in South London, which they run in a church hall, and they have about 15. Families that attend regularly, and it's like a make and create crafting club, but there's loads of sensory play. And they also so basically the parents stay, and there's stuff to keep everybody busy. But there's no like it's not formal and it's not like structured, but there's but it's supervised. And then in and amongst that environment, there's an opportunity for parents to get the support they need as well without having to So yeah, so it's kind of like collective childcare and messy play and collective peer-to-peer support supervised by Jenny and Martha, who are freaking incredible humans.

Mark
That sounds wonderful.

Heidi
I know. So that's called the Make and Create Club. And then Audhacious Humans is spelt like Audhacious Humans. As in AuDHD acious. And they also run online training, support and short courses for parents and carers. Their approach is very sensory-led. So they do a lot of work around helping parents and carers understand their kids' sensory profiles and what that means. you know, in terms of they've run an amazing course called What the Duck, which is basically a trying to work out what's going on for your kids for They're freaking incredible. Find them online. Audhacious Humans and the Make and Create Club, and they're just I love them to death. They're brilliant.

Mark
Amazing. Thank you. My neurodiversity champion for this one is going to be Eliza Fricker, who is a wonderful advocate for neurodiversity. She's been mentioned here on Neuroshambles before, but she has a wonderful book. called Can't, Not Won't. And I think it deserves a shout out in this particular episode because it's an illustrated memoir of her own child's school avoidance, the battles with the authorities to access support and the challenges of coping in the meantime and all of that. It's not a book you have to read in that sense. It's it's illustrated really Beautifully, and it's it's just you feel seen.

Heidi
Eliza and I released our books at the same time, and there was a week when we were both in the Sunday Times bestseller list, and I've never been prouder.

Mark
It was amazing. So, yeah, if you are a Neuroshambler who's going through this and you haven't looked at that book, it's lovely. So, it's definitely worth a shout-out.

SECTION INTRO
Tiny Epic Wins.

Mark
Okay, tiny epic wins now. These are the things that any neurotypical family would shrug at because they wouldn't be seen as a big deal. But for us neurodifferent families, they are epic. wins. I've got a request for a tiny epic win update, actually, Heidi. I want to know what's going on with Theo's Tortoise because in the last episode it had touched a stick, I think.

Heidi
So someone's doing target training these Sulcata tortoises and sent me a twenty minute video, and one of them like touched a stick. Basically, the piece of work that he was doing, the module finished.

Mark
Right.

Heidi
And the poor tortoise did not progress past touching the stick.

Mark
I thought you were going to tell me he's like on a jet ski or something.

Heidi
No, I still feel about it. Has this tortoise just been trained to touch touch a stick over and over and over and over again? And is that all he's ever going to be taught to do? Because no one has enough time to actually train him to get on the scales. And Theo was like, possibly. But um he did get and I can't remember what sc and he'll be cross because I don't because I won't be able to remember the exact score but he got a distinction Okay. The assignment. So that's an epic win. Yeah, absolutely. Yeah, that's a win. And he's just got all his results back for year two. and he's smashed it, basically. He's doing a foundation degree currently, a two-year degree, and he's going into his third year. So he gets to graduate twice. He gets to graduate with his foundation degree. And he gets to graduate with his honours degree as well. So he has, as it confirmed, that he's got a distinction of first in his foundation degree. Amazing. Not bad for a kid that didn't do any GCSEs, is it?

Mark
Yeah, absolutely. I've got a tiny epic win from just today. India. Took part in the school short film competition, right? Which in itself, like this is something that Jay and Otto would not be interested in doing. India's a lot more creative, but she wanted to do it. And very often. When something comes through from the school, when you're a parent of neurodivergent kids, it's like, hey, do you want to do the school Halloween party or the discount? Like, you know, it comes in, and you're automatically just like, fuck no, that's not meant for us. So this came through initially and I just dismissed it out of hand. But India actually came up to me and said, I want to do this short film with my friend. So I was like, okay. I ended up having to be the producer. I had to edit it. Who'd have thought? PDA kids are very difficult to direct? How funny that so I just got all the raw footage and edited it together and they and it's absolutely fucking bonkers. And it was called Gary the Flying Squirrel. Which involved India in, you know those like those stretchy body stockings?

Heidi
I'm wearing a leisure suit right now that makes me look like a flying squirrel.

Mark
Yes, so India's in that and just basically being a flying squirrel. And it was ridiculous and silly, but quite fun. And we recorded that and submitted it. And then India said, I want to go to the screening. Now, that is like a whole school thing. And that is like, you know, I'm again, nothing that Jay or Otto would ever want to do. India was like, I want to go. It's like, okay, fine.

Heidi
Amazing.

Mark
But she said, you're not allowed to come.

Heidi
Okay.

Mark
Fuck, I have fucking edited it. I've seen it. So India went with her friend's dad. And her friend, obviously.

Heidi
Oh, so you were allowed to come, but she wasn't allowed to come.

Mark
Yeah, she wasn't allowing me specifically.

Heidi
Okay.

Mark
Everyone else is invited. So she went and she decided that she wanted to dress up for it. This is bleeding into what a flip territory now. The outfit that she wore was one of my old shirts that she's nicked from my wardrobe. And it is massive on her. She wore a tie and a fedora.

Heidi
My God, this child's amazing.

Mark
Came downstairs, and I was like, Well, you look.

Heidi
Like a director.

Mark
Eye-catching. Anyway, and like she'd like, and like the arms were just flap-flopping around and flapping about. I was like, Can you at least roll your sleeves up? She's like, no. So she went in looking. Absolutely bonkers. But she came back, was really happy. They got run her up in the whole the whole of the year. So uh she was really happy. I'm delighted that You know what? I'm really delighted that she just went as herself. You know, like, because part of me was I was a bit reluctant because no one else is going to be dressing like that. It was incredibly eccentric.

Heidi
How old is she?

Mark
Like eight. She's eight. She's about to be nine.

Heidi
I love that she dresses for occasions already. Yeah yeah yeah. Me and my friend Kathy dress up to go to the cinema. like we go to the we address to the theme of the film that we're seeing.

Mark
People think we're mad. It's hilarious though. And I just thought it was really lovely that because I did say, look, you are going to look very different from everyone else. And people might make comments because I always feel it's my duty to say that. She was just like, I don't care. I was like, great, okay. And so I really love the fact that she did that. And, um

Heidi
Yeah, I love that too.

Mark
And they took took a medal home. So that is an epic win for me.

Heidi
I absolutely love that.

SECTION INTRO
What the flip!

Mark
Okay, what the flip moments now these are the things that our neurodivergent kids will say or do that completely baffle and bewilder us happily Regularly at this end, I'm sure you get some fun ones at your end. Heidi, have you got anything that you can share with us?

Heidi
So, part of Theo's, um, and I do get it, but it is also a oh. You know, one of ours. No. And he um so this week he broke two mugs because currently his ticking

Mark
Right.

Heidi
One of his ticks is to throw things. Okay. So I'm going to have to get him one of those tags for around his neck for his phone because I'm worried he's going to throw it in the lake while he's walking the dog. Okay, yeah. But yeah, so he just lobs stuff. So this week he's broken two mugs. So he was telling me that he had bought a juice in a um basically he said, look at this carton This isn't a juice carton. I'm not okay with it. And it was a carton that you would normally imagine to have a smoothie in. Yeah. And he was like, it's not. A smoothie, it's juice, and it doesn't taste right because it's juice. It has pattern recognition right there, isn't it?

Mark
Because I wouldn't have thought twice about it, but he's like, No, this is what smoothies come in.

Heidi
And he's like, And I have to put it in a glass. Because I can't drink it from the carton. And I'm like, well, what about Capri Sun? He was like, that's different. That's a pouch. I'm like, okay. He was like, juice is all right in a pouch, but it shouldn't come in a milkshake carton or a. smoothie can. Then we were on talking about mugs and he was telling me that his mug that he's having to use for cups of tea at the moment, because he's got as much of a tea addiction as I have, is his hot chocolate mug. And it doesn't taste right to be drinking tea out of it because the lip of it is too thick. But for hot chocolate, that's okay. For hot chocolate, it's fine because hot chocolate does need a thick-rimmed mug. But tea. Something to do with the viscosity, I guess.

Mark
Really?

Heidi
The thickness of the mug is interfering with his tea tasting experience. So he sent me a picture of his smashed mug and said, Please, can you get me another one of these? I got it at Asda at Christmas. I don't know if I'm going to be able to get the same mug again. But he's like, I need this mug because this was my tea mug, and I'm having to resort to drinking out of the hot chocolate mug. So that was kind of one of the what the flips.

Mark
Nice one. I've got a couple of what the flip moments as ever. One relates to filling out an EHCP form from Jay again. So the last last week's was about Jay filling it out when he was in burnout. Tam did it with him recently and and relayed this to me. This was for his his more recent review. Because you've got to fill out, you know, your pupil's view, your students' view. And one of the sections was, how does your child prefer to communicate? So Tam asked him, and he went, typically via proverbs and a fancy British accent.

Heidi
God, I love that. That's golden.

Mark
He doesn't miss a beat. It just comes. It's just instinctive. That was one of them. I've got two from India. It the what if there was India walking into the room and fanning herself with a five pound note 'cause she found five pounds in the street, which is exciting, right? So she walks in, starts fanning herself with a five pound note. And I went What are you doing? And she just looked at me and went, Living the dream Fair enough. Yeah. That's amazing. The final what the flip from India is: it's her birthday coming up. And I asked her what she wanted and This is what she said. I want you to save up all of my birthday presents for the next few years so on my twenty second birthday I can have lots of sausages and bacon. And I went, why? And she said, I want to catch a Yeti and I need to get it to trust me. So so much planning has gone into this. So much planning. She will forego. However, many years of birthdays, 13 years of birthdays. I want to be your kids' best friend.

Heidi
That's amazing. I want to go on a Yeti adventure.

Mark
I'm determined to do it.

Heidi
but that's amazing what is the best way to a yet his heart that's amazing one year i think theo would have been 14 and he asked for a tarpaulin for his birthday nice

Mark
Did you get it in? I mean, it's a lot of fun.

Heidi
Yeah, yeah, yeah. Exactly.

Mark
And you are as well. It's like, great. I've got a clear guide on what to get, and it's not super expensive. Great. Yeah, nice. Okay, so that is it for this deep dive into EBSA, school avoidance, barriers to attendance, anything you want to call it. We've uh We've drawn the curtain on this particular topic. Um, firstly, job done. Um firstly, Heidi, thank you so much, as always, for coming on and sharing your wisdom on This particular subject. It's been really fun. Thank you.

Heidi
I don't think I make any secret of the fact that this is one of my favourite podcasts, if not my favourite podcast to do.

Mark
It's now, I guess. Boring to hear though, so you can keep saying it, it's fine. Also, massive thank you to Neuroshambles listeners out there for saying lovely things about it, emailing me. I've had lots of really great responses from the first part of this the topic of the week, which has been really lovely. So thank you for sharing that. Another bit of news is that I have set up a mailing list, which because I've got lots of Exciting things in the pipeline that I'm not going to tell you about entirely yet, but there's it's definitely worth signing up to my mailing list if you can. I've decided that if you do sign up to my mailing list, I will send you A PDF of every single what the flip moment that I've included in all 59 episodes of Neuroshambles

Heidi
I want that.

Mark
You have to sign up to my melee list then. Um so I'll put a link in the show notes for that and if you sign up then I will send you a PDF of all of those. You know, just take it to dinner parties and regale people with the nonsense that I have to live with. But I mean, if you don't want that, still sign up to the main list because I'm going to keep you up to date on the things that I'm currently working on, and there'll be bonus content. and stuff coming into your inbox as well. So uh please do that. I am also available on the socials on Instagram, Facebook and TikTok, of course. And if you want to email me, you can email hello at neuroshambles. com to say hello or suggest any. Topics of the week, or tiny epic wins, or what the flip moments that you want to share. I think that's about it now. All that remains for me to say is: have a nice life!