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Hi, my name is Jordan. I am a special education teacher from the UK. I share my passion for

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everything communication, sensory regulation and fun lesson ideas for my classroom of disabled

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pupils aged 4 to 11. Each week I am joined by experts in the field answering your questions

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and sharing our knowledge and experience working alongside our beautiful young people. Let's get started.

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Hello everybody and welcome back to another episode. Today I am joined by Jesse who is mom and educator

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and talks loads about PDA on her profile, on her social media profile and it is a topic that

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I am very new to and learning about. I've never had a child in my class that has been formally

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named as having a PDA profile. However, after watching your videos and videos from other

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creators talking about PDA, lots of children spring to mind that I have worked with over the

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years. So I'm really keen to learn more. So Jesse, would you like to introduce yourself? Tell us a

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little bit about how you came into the space and what your relationship is with PDA.

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So my name is Jesse obviously. I am mum to three boys. I've got an older son Leon, he's just about

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to start his GCSE so he's nearly 16 and then we have seven year old twins. Maxie, our youngest twin

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is just been diagnosed with ADHD. At the moment we're pretty adamant he has got a PDA profile

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and so we are in the final stages of his ASD diagnosis because unfortunately PDA in the UK

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isn't actually recognised as a formal diagnosis. I didn't know that. Yeah, so does it have to be paired

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alongside ADHD or ASD? I think it can be. It totally depends on, you know, it's such a caveat

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of so many moving complex parts that I think until, you know, so many, every child is so different,

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you know, they could be, they could have ASD, they could have ADHD, they could have ADD. So again,

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until that child, they may show indications that they've got ASD but then there's some parts of it

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that just don't make sense and I think that's how we initially started to sort of think something

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isn't quite right here. And about what kind of age was that? What did you notice and when was,

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when did you notice those things? I guess you've had, you've got a twin so you've got a lucky

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position of being able to kind of have a direct comparison, weren't you? Well yeah and obviously

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because we've had an, we've got an older son, it was always, I mean Maxie has, he's verbal, he,

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you know, he's like his motor skills, you know, he's always hit those milestones at the correct

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time. There were a few things and he was, you know, learning to walk and talking but that was

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just down to the fact that Jake, his twin, did everything first. So Jake did everything for him.

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So he was like, I'm just going to sit here and I don't need to do anything because my twin brother's

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going to go and get me my drink or he'll answer for me. But the real indication that there was

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something not quite that the behaviour wasn't sort of the terrible twos. When they were at nursery,

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they moved from, not the baby room, when they moved from like the toddler room up to the preschool

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room, obviously his demand, unbeknown to us, the demand starts to rise because they are slowly

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prepping them for that introduction into reception. So they start to get a little bit more formal and

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it's a bit more like we're going to do sit down and do work now. They have higher expectations,

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don't they? Yeah, the expectation rises and then obviously with that becomes also the demand

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because there's an expectation that you need to be able to conform to when you go and are ready

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to go to primary school. And it's then really that it started to get quite explosive, just even

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little things, throwing chairs. I think initially we would just, I mean, I think initially we just

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thought, maybe he's just bored, maybe he's just bored. It's quite generic, isn't it?

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And it's quite not boring, but I think if you're an intelligent child and you're ready to move on,

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because they're born in October, they were obviously at nursery for an extra year effectively.

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If they'd been born a month earlier, they would have started the year before. So we put it down

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to boredom really. We just thought, oh, he's going to, because he really, really, really loves

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writing, he struggles with it now. He's an intelligent lad, he's obviously stimulated

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in that way in nursery. Of course you think that. And he's super social. But then when there was a

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few occasions when the phone rang, it's like the nursery, we're thinking, oh, what's happened now?

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And Max, they'd asked him to just do little things, but he just couldn't cope. So the anxiety

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obviously then starts to rise and then he basically can't cope with those demands, which then can

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result if it's not dealt with in a decorative language way, or it's not dealt with calmly

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and quickly, it will just escalate and to the point where it can explode. And those preschool

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classrooms, they are busy. There's a lot of children. There's more than a mainstream

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primary school. Lots of children, loud, busy, cluttered often. Yes, totally cluttered.

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And it's very different to our home environment. Even though there's five of us in our house,

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our house doesn't have 60 children in it. And the building was really, the building's quite old

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that they went to nursery and so the echoes used to travel. So we kind of thought, oh,

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it's definitely, definitely down to the fact that they are... Were you seeing it not at home then?

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You weren't seeing those similar reactions to demands, or were you? We were to an extent,

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but obviously when he was at home, the demands are a lot lower. Yeah, of course they are.

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So yeah, and he's in his safe space, but unbeknownst to us. He's not anxious. Yeah,

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exactly. He's not anxious and at home is his safe space. So we can't... And I think naturally,

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without even knowing it, I bet you'd kind of worked out how to phrase things.

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I just thought he was a little bit... Without even realising it.

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Yes. And I think to start with, we just thought he was a little, not a little, not difficult,

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because that's the wrong word. We just thought he was a little bit more sensitive. Yes.

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Obviously. Emotional.

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Yeah. And he does have a twin brother who's the polar opposite. Jake doesn't, he's bouncing

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about all the time. He's always... And Max, he can be... He was getting quite reserved sometimes,

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but then the occasion started to get more frequent and they were starting to ramp up in terms of

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severity, pulling off glasses off the teacher, off his nursery assistants. And I think that when

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they're in that toddler room and that baby room, it's all very nice and nice. It's painting some

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pasta shapes and they stick it down, or they can just have a little cuddle. Yeah. And also those

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behaviours can be more easily not reacted to or not seen as so negative, this awful thing, because

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they're two or because they're one. And lots of toddlers react in big emotional ways. That's very

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toddler-like. That's what toddlers do. Very toddler-like. So I can imagine that even if it

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was always happening, that all of a sudden they have this three, four, five year old doing the

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similar things that he's always been doing. Yeah. All of a sudden he's getting a different reaction.

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The reaction of the adult is that it's bad and that it shouldn't happen. And it's naughty. Yes.

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And that's the change, isn't it? That's, you know, and then, you know, they obviously were trying to

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discipline him. Yeah. And obviously the discipline is very, you can't do this, you can't do that.

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And, you know, timeouts, you know, we've never been a fan really of timeouts full stop with any

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of our children, but timeouts then became quite a issue where things would then escalate even more

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and there'd be, you know, throwing chairs. And then to sort of intercept it quite quickly, they

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would remove him from the class, from the classroom, which, you know, we were quite pleased

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about. They had a sensory room and he was quite happy going to the sensory room, like he really

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enjoyed it. And then he started spending quite a lot of time upstairs in the nursery manager's

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office and, you know, he was like printing out pictures. And it was then, and I'll never forget,

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he just suddenly got this mad obsession with birds and they were printing out bird pictures for him.

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And then he just had an absolute refusal to go back to the classroom whenever he went to nursery.

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He was absolutely adamant that he found a safer place. He felt comfortable. Oh, he's just obsessed

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with birds. And this kind of went on for a couple of weeks. And I said to Darren, my husband,

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something's not right here. I just, my gut instinct is telling me, you know, is he autistic? I don't

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know. I don't think he shows the key characteristic traits of somebody who, of a child who's autistic.

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However, there is something that is just not quite right that we couldn't put our finger on.

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Yeah, there's a neurodiversity there. His brain works differently than his peers.

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That's it. He needs different things than his peers. Whatever you call it,

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there was something there. You had a motherly instinct.

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Yeah, I took my gut. I train human factors in my professional work. And I was just thinking,

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my, you know, I train people on following your gut instinct. And I knew something. I said to,

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we were discussing it one night and I said, there's just something not quite right here.

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You know, he's had his pre-school checks. He's hit all the markers. He's done all those milestones.

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It's not academic.

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I said, it's not academic.

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And it's not even social. You said he was really social.

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He is really social. He loves it. And he's really academic. And he really enjoys

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the academic side of work when his nervous system allows him to.

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I mean, this is it, isn't it?

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Yeah. I mean, you know, they start to prep for phonics in preschool and phonics is renowned for

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children that have neurodivergent needs. It is a really difficult thing for them to grasp

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because of the complexities. It's the sound, it's the context.

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It's not often how they learn.

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Exactly. And it's very, I think our education system is very rigid and it's very, it's way

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for a while.

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It's for a certain type of learners and it works really, really well for certain learners. But

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the fact is, as we're all aware, that there are a lot more learners that it doesn't work for.

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Exactly.

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So because I know that you homeschool now, so we're in nursery. What does the pathway look like from

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him being in the manager's office at nursery to you start him starting school and you deciding

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to homeschool? What happened in that?

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The homeschool thing was just totally, we're not accidental, but we were really under no choice

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as a matter of fact. That's just, you know, it's a decision that we had to make. So basically,

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I think they obviously went up in the September. So the start of that year, the 20, where are we

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now? 2025, 2022. One of the nursery assistants said to me, listen, I've got a son who's 21 and

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he has something called pathological demand avoidance. And I was like, wow.

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It sounds quite hot when you talk about pathological.

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Sounds a little psycho. I'm not going to lie.

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It does. It's really poorly named, I think. I don't know if you agree.

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It's awful. And in America, you know, which is interesting, in the States, they call it

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pervasive drive for autonomy, which is basically is a lack of autonomy due to high levels of anxiety.

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It makes so much more sense.

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And we kind of said to, and I forget her name, Vicky, she said,

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he, my son had, this is 20, you know, 10, 15 years ago, that, you know, going through the

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mainstream schooling system was a nightmare for him. He was that naughty child. He was that

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disruptive child that was always getting into fights. And I'm just kind of, oh, okay, whatever.

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As you do. Yeah. But our local authority then came to the children's services. They came to sort of

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have a chat with us at the nursery and sort of said, you know, I think next steps,

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we're going to come and observe him. And we said, yeah, that's absolutely fine. See what you think.

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And they came and they said, yeah, we think he'll be all right. Just send him, like, he'll be all right

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going to mainstream. Obviously, because he's academic, because he's academic. And because he

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was walking, walking, he was hitting his milestone. So why would they spend their money, their tax money,

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on finding him a suitable provision? This is a problem we're seeing. Yeah. So we just were,

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oh, just trust our local authority. Of course. Why wouldn't you? They're the experts. Yeah, of course.

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And I remember sitting there with her and she sort of said to me, oh, you know,

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well, but he can talk. But he can hold a pen. But he can brush his teeth. He doesn't have any

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issues with food. He's like, you know, he's never been, he's never been over sensory,

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you know, apart from really loud noises. And we sort of said, yeah, that's, you know,

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you know, something isn't quite right. But we don't really know what it is. So they went off to

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mainstream in the September. They were separated in class, which was a decision that we felt was the

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right decision for them. We just felt that as twins. And their primary school, the sort of,

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their procedures, we would prefer twins to be separated. And if they are together, we would

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keep them just together for reception. If they were on the younger side of that year, so if they

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would know they just turned fours, not the fives, five year olds. And we sort of said, yeah, we think

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it'd be really beneficial for them to, for both of them. So they obviously went off to school in

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the September and you know, they had that phased introduction for the first sort of three or four

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weeks and everything was okay. And it got to, I think, yeah, it got to Christmas and the cracks

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were then starting to show. Right. Because expectations start to rise. Expectations start

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to rise. And I remember him coming home from school and he's like, I have to sit on the carpet

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every day and clap my hands. And he said, I don't want to sit there. And we thought, you know,

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it's a nice carpet. He said, but I don't like it. And he said, I don't sit in there. So we spoke to

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his teacher and she was amazing. She's really, not, she's firm, but she's, and she's firm and

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she's fair. Really experienced primary school teacher. Yeah. Firm and fair. Very experienced.

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And she said, do you mind, I think for Max, we're going to, and I think this is another issue,

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the logistics, the layout of the school is, you know, it's a three class year. So the whole of

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infants are in an open plan, basically classroom. Wow. So overwhelming. So it gives me anxiety,

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Jordan, when I have to go into school. I'm like, I can't cope, but I need headphones. So they have

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some classrooms, but there's no, the reception classes are all open plan and there's like a

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pully door, but they keep them open because they're all of their resources, you know, their

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breakout areas, they're all behind. So they said, do you remind if we remove him from the actual

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class and sit him on a table behind, like in a part of the classroom, but it's not actually in

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the class. We said, yeah, of course. No, that we want him to succeed. Yeah. We want him to succeed

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in school. So then that kind of worked for another term, but then his resistance to actually doing

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the expectation of what he was supposed to be doing. The resistance then started then in the

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pushing back and the screaming and the shouting. And then he started to spend quite a lot of time

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in like the timeout sensory room. And then one day we got a phone call saying that they'd put him in

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there and he'd obviously, you know, he just, you know, because it's a nervous system disability,

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he can't control it. So when he goes from nought to a hundred, you know, if he's in an enclosed

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space, he would just pick up everything. It's very unsafe, isn't it? For him, for others. And it was

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a real sensory room. It wasn't a breakout room that we see now in SCMH and specialist schools where

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there is nothing. It's a sensory. So chairs got thrown. I was stimulating again. And then it

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resulted in the fact that he'd managed to get out of the classroom and he basically, there was some

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other reception children sitting outside doing phonics, like split between the TA and the class

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teacher. And he would just, you know, the noise, the dysregulation and sort of the chaos of coming

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out of there, like seeing red, he then started to pick up chairs. So they basically then had to like

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evacuate the entire area, which then made him even more stressed out. So they have the fridge

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where the reception milk and stuff used to sit and he tried to push the fridge over. He had...

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he's trying to make everyone else feel like he feels right. He is in absolute fight, fright or

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flight mode. And he is just terrified. I can imagine, I can feel it as you're describing it.

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His heart rate must have been so high that you don't make sensible decisions in that frame of

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mind, do you? Nobody does. Nobody does in fight, flight or freeze. Yeah, exactly. So then we had a

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meeting with Asenco who were, they supported us and they had teached the entire time. Because

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obviously our older son went there and she sort of said, I think we should speak to CAMS and like

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MindWorks who obviously we live in Surrey. They'll come out. So they came out and sort of they

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observed him and they sort of said, oh, we're trying to do some strategies. Obviously that didn't work.

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Yeah. Because I think the environmental factor was one of the main... They were thinking mental health,

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which isn't, which is true. Of course it is. Yeah, totally. It's because of the environmental...

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It's the environmental factor that kind of adds to it. Unless you change that, you could do amazing

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work with his mental health, but unless the environment changes, nothing is going to change,

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is it? Yeah. And then, so basically at the back, so after Easter they went back for the final,

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for the summer term and then things just started to get really out of control. So we reduced him

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down to just mornings because we were just like, we just can't do it because then when he was

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coming home, it was just absolute carnage. We couldn't regulate him. He was just, he was really

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out of control. He like, he wanted to go to school, but he couldn't. And then in the mornings when we

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were walking to school, we'd get to the same spot every single morning and he would just say,

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I've got tummy ache. I can't go into school. Anxiety. Anxiety. The anxiety was building up.

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We get to literally the same place every single morning. We walk behind the footpath is behind the

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main school field and every single, so you can see it because the fence that you can see the fences,

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it's like a C3 metal fence and you could see him, he was just, he was kind of looking at it and then

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you'd get to the point where the alleyway leads to walk Wamster front of the school and exactly

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the same point. He'd say, mum, I just. I can imagine your anxiety at that point was bubbling too,

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because if it was the exact same point, you'd be like, okay, it's coming up. He's going to refuse.

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Or I don't know how, I don't want to put Wesson to you. How did, how were you feeling in that time of

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him not wanting to be in clearly not being happy and wanting to go in, but you wanting to have been

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do what's best for him. You know, he's academic. You want him to be in education. You know, what

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was going through your head during all this? Again, it was really quite confusing because

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I think we'd had somebody else, this Arsene code said, have you thought about PDA? And I said,

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well, again, they said it again. And then she said, when a mind works came out and sort of sat down

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with us, she sort of said, you know, have a little look at this picture, you know, she's in this PDA

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society. But again, you know, it's when you start to Google PDA, apart from the PDA society website,

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there isn't really much out there. And it's all the sort of same information. No demand parenting,

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but you're like, what does that actually look like? But nothing about sort of the school

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environment. So we reduced him down for the rest of the term. Summer was amazing because he was

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an unfortunate enough with my job that I have the summer holidays off. We had a great summer.

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It was things that he loves. He's messing around with his brother. We're going on holiday. We're

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going to see nanny and grumpy. Yeah. It's not, and he's not at school. So we didn't think about that.

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We just thought, oh, it's the summer holidays. I remember when I was a kid, and I used to have

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the summer holidays, you know, it's like, yay, went back for the start of year one lasted

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approximately about six. I mean, you just saw a massive decline.

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Yeah. So really he, so from like the Christmas of reception, he was on a reduced timetable

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straight away, which then resulted in, you know, us having to, well, we started to homeschool

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because we were having to fill the gaps in. And we were told very early on, you know, the homeschool,

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it's really important to keep them on roll because if you remove a child from the role system

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later down the line, if you need father's help and support, it actually, even though this is

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mind blowing, it actually can be more of a detriment with your local authority within the

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HCP having a child out of education and not on roll. So then we were like, well, it looks like

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your choice, doesn't it? This is the problem I've seen with parents. Yeah. If it's the school saying

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they can't meet the need, that's a different thing. But if it is parents, I mean, it is always both,

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but if the parent makes that decision further, it's your hold accountable for it. We can't,

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you're not eligible for any funding because it's your responsibility. Yeah. I've seen that over

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and over again. So our Senco and head mistress said, whatever happens, we need to keep him here

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until. So obviously the HCP stuff had started. And, you know, he was, you know, we were homeschooling

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basically from after Easter and reception, because we were quite concerned that if there was a really

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big gap, then is he going to be able to catch up? You know, can he survive in the mainstream setting

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environment? We didn't know. Is it just, is it just integration? Is it because we split

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him from his twin brother? That was another consideration. And you've had COVID as well.

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Like there's so many questions. It was just like, is this, you know, have we, have we actually made

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the wrong decision? It actually could have been any one of those mental challenges. Like it's easy

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to say now, isn't it? Well, of course it was video, but actually it could have been any one

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of those things. Lots of children also struggle with the transition, a huge transition. Transitions

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are huge. Especially you're a twin, especially after COVID. All of these things, all of those

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things could have been a possible reason. Yes. So we really didn't, we kind of, again, were a bit,

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not in denial, but because again, those milestones have been hit. Yeah. We've spoken to the doctor

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and the doctor was just like, you know, what's the problem? Basically he's just struggling at

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school, like throwing stuff around, you know, maybe he's, you know, the good old thing. Are they tired?

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Are they hungry? And I was thinking, I don't know about this. This is not. So we kind of, you know,

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just doing a couple of hours work a day with him, you know, just like, you know, watching

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number blocks. How was that going? Was it quite a positive experience? He was willing and...

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He was willing on the days where it depended on what they did with him in the morning at school,

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completely dictated to how his behavior was then for the rest of the day. Makes sense.

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And, you know, some days they were just, you know, keeping his head above water, so to speak,

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just to keep him there. He then went back, yeah, in September into year one. And we, you know,

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we had had quite a few meetings before the summer term had broken up, sort of say, you know, our

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concerns. And they sort of said, you know, well, what's the HCP? Like he'll get more funding and

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he'll have a one and they'll have a full-time TA hopefully, you know, for funding goes through.

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So we went back in September, you know, completely, I don't think even naive,

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just thought, you know, it will be all over if we get the funding and he has a one-on-one TA.

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So off we went back to September, lasted probably not even to the half term in October. And then we

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were on like sort of getting, we were, I think, quite close to transition of getting in burnout

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and then sort of a month after them going back, I think it was the start of October, our Senco

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officer, Jo said to us, listen, there is a PRU that we really recommend that he goes to the

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pupil referral unit and we're going to call them because we cannot cope with him in school because-

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They were saying we cannot keep him safe.

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We can't keep him safe. She said we cannot meet his needs. And, you know, she said when he is

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regulated, he's a dream student, but because of the class sizes, you know, and because now the

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safeguarding incident with other children-

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So they're exhausted or everything they could offer as an environment.

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They had done everything. They couldn't offer anything else.

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And that isn't the fault of the school, is it? Ultimately, it is the wrong environment.

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Totally the wrong environment. So, you know, hearing that, you know, you're going to be, so

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we sort of said, well, what does that mean? And I remember I was at work and I remember just

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sitting on this bench with my mate from work and I was sort of said, oh my God, they want to take

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him out of mainstream and send him off to a pupil referral unit for an entire term in January.

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You know, it's nowhere near our house. He's got to go in transport. He was six, just turned six,

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just turned, no, because they were fine, just coming up to, yeah, coming up to six.

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And I just, and I just, I said to my husband, I thought, I know I was like, oh my God, I'm the

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worst mum ever. You know, he's going off. And I sort of said to the Senco, well,

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what if we don't want him to go? And she said, basically, if you don't send him, if we don't

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agree, she said, it's going to look like refusal from the parents. She said, and there will be no

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other options basically offered. She said, and she said, really what you need-

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It's good advice, because unfortunately that is the truth, isn't it?

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It's true. And I sort of remember sitting there thinking, so you're telling me that basically-

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It's this or nothing.

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It's this or nothing. And she said, she said, even though you may be completely distraught

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about this decision, she said, what it does enable though, is that it enables a pattern to be built

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dependent on how he then behaves when he's at the PRU. If you know, the environment is correct.

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Anyway, he obviously didn't go back to it. So he finished year one, a couple of weeks early,

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because it was just getting too much. And then we'd taken him to the PRU. You know, he really

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loved it. There were classes of six children. They had a therapy dog, Gemma.

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They really understood that kind of, you know,

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Yeah, we weren't-

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What's this defiance-y kind of profile children and PDA profile children. They understood that,

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because lots of the children that are educated in PRUs are that kind of profile child, aren't they?

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Yeah. So we went and Darren and I, my husband, went and visited it and we just, you know,

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we absolutely loved it. And we said, yeah, I think, you know, we have to try it because-

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It's worth a try, isn't it?

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We have to try it. It's only for a term. It's not even, I mean, it's a long term anyway.

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And I said, you know, it's not that long. You know, we haven't got to worry about transport.

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Because what if, what if this is the answer?

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And I said, what if he just goes here for four months and I don't know, he comes back to

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mainstream and he's a different child. So he went off, he had three weeks of utter chaos. You know,

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he was getting picked up, you know, the transport is obviously provided by the local authorities.

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So that was something else we didn't have to worry about. But again, I'm then packing my six

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year old child off in a car with a stranger.

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Yeah, it's huge.

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It is huge. But the thing that we have really noticed about PDA children, well, mine, my

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personal experience, they are so resilient that the resilience in parents needs to be more is what

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you need to build on because you're just going, you know, up and down out of all these different

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emotions. But Maxi, and the first day just, you know, the car pulled up and he's just like, yeah,

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see, I'm just on the back of his car. I was like, oh my God. And he was just like waving out the

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window and off he went.

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Resilience isn't something that we hear about, is it? But actually, maybe that needs to be spoken

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more about as it's a resilience because that's an incredible skill, isn't it?

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It absolutely was not phased. I mean, leading up to, I mean, so when he was leading up to,

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in the summer holidays before they started mainstream, he had this, he had such bad anxiety

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that he was constantly going to the toilet. I mean, his toilet habits, you know, he was going

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to the toilet probably 20 times a day due to nerves. And that settled quite quickly once he

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started mainstream, even though it wasn't right. But when the Christmas before in the holidays at

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Christmas before he started the PRU, like the frequent urination started and I said, he's

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starting to get anxious now, even though he's not saying it. We took him for the first couple of

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days, but the headmaster said to us, he was just like, listen, it's better for them to go in the

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transport because of the way it is the taxes pull up the gate opens, they drive up, they come,

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they doors get open, the teachers get them out. It's like this. He said it's a routine.

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It's routine. And he loves it. You know, he's like cruising away in this Tesla going off to

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cruise off school. And he thrived. He was an outstanding student, right within a month or so.

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He loved it. Probably less cluttered less stuff out stuff that understood him and how he learned.

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And how they had three teachers in a cast of seven children. You know, it wasn't, they didn't,

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they capped it at how many they took anyway. No, they ate together. They had breakfast, lunch,

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dinner. There were, you know, breakout rooms for them. They had a therapy dog. They went on school

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trips. He did so much. He did so much in he just did so, so much in that short period of time.

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And then he obviously the PRU is a short term interim sort of, yeah, okay. It's a short term

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interim sort of offer. It's only if you're expensive, it's expensive. And I think also

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it's the children that don't have an EHCP also. I mean, in Syria, I believe it's because

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the majority are children that can't meet the mainstream school can't meet it. Or it's children

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that are in that that gray area of they haven't gotten the EHCP expelled, but want to keep them

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in education, that kind of middle-y bridge. Yeah. And I think that, you know, there were some

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children there that were in the year five and six class, because they sort of accumulated some of

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the classes together because there was not that many students. They had been expelled. Yeah.

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I grew up PRU unit was generally for used, you know, and I'm 40, generally for children that had,

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you know, you know, behavioral issues, whether or not it was generated.

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So you're told, right?

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Yes.

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They've got behavioural issues, they've got trauma.

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Parents in prison, you've got whatever, you know, their home life is dreadful.

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It's just not true. That's what people think. But actually, yeah, you visit, I mean, you see how

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wonderful and just outside the box thinking creative, kind, loving.

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Yeah. And it was just.

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A whole bed affirming all of these wonderful things.

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And it was just so amazing. It was life changing. So obviously, you know, his teachers visited,

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you know, the PRU unit visited his mainstream. And I remember speaking to the head mistress

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at the PRU and she said, I don't think she said the layout of the school is.

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She could see it.

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She said the layout of the school is going to be an issue on the integration back. And we were

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just like, yeah, you know, it's doing really well. So he went back and that was what that would be.

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Is it a year last year? He went back. Yeah. So he went back. So, yeah, he went back.

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So he went there last this time last year, went into Leastar, you know, and we worked with it.

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We're like, well, they've nailed it. Now we've nailed it. He's going to be able to.

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Yeah.

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He's going to integrate himself back.

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It's dangerous thinking, isn't it? Because it's an environment thing. It's not a him thing.

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And then literally, we went back after Easter and within two days, he was excluded for five days.

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I believe it because also he's going to be even more frustrated than he was before because he

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knows how school can be. Well, it's like when in a job, like if you've been to this amazing job

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that you've had to leave and then you start your old job again, you're going to be even more resentful,

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aren't you? Well, and I think, you know, a couple of weeks before he finished, he'd started to say,

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he'd started to say, I don't want to go back to the mainstream. I don't want to go back to my school.

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He already was bubbling. Yeah. And he just said, I just, you know, you know, and I asked him,

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you know, what is it? And he just said, it's just, he said, mommy, I just don't like, he said,

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I just don't, he said, I just don't want to go. So we put some kind of said, oh, you know, obviously

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he's anxiety, the PDA thing. Yeah. He went back. I think, yeah, I think he was back two days or three

379
00:32:34,000 --> 00:32:41,760
days that he was excluded for that entire week. And then a bit after he then from the get-go said

380
00:32:41,760 --> 00:32:45,440
that he was not going to be able to meet, they weren't going to be able to meet needs and be

381
00:32:45,440 --> 00:32:50,640
there for normal school hours. Yeah. So he went back anyway on a reduced timetable straight away.

382
00:32:50,640 --> 00:32:59,200
So then we were homeschooling. Yeah. And he basically just, I think he had over 15 days

383
00:32:59,200 --> 00:33:04,240
worth of exclusions by the time they'd got to half term or just after. He was already on a reduced

384
00:33:04,240 --> 00:33:08,640
timetable. He was on a reduced timetable. He was able to meet his needs, were they? Or keep him safe?

385
00:33:08,640 --> 00:33:13,760
And he was just, you know, it was going for an hour, you know, an hour a day. Meanwhile, he's

386
00:33:13,760 --> 00:33:21,120
building so much amnocity and anger towards education, school, learning. And you don't want

387
00:33:21,120 --> 00:33:26,320
this, you know, from going three, who loved writing and reading and learning, you didn't want,

388
00:33:26,320 --> 00:33:32,720
I can imagine, to lose that. We didn't want him to have, you know, like education PTSD,

389
00:33:32,720 --> 00:33:38,560
because we were thinking. Traum, I can imagine children do face that. Yeah, totally. So he went

390
00:33:38,560 --> 00:33:47,440
back, you know, and he, we sort of really struggled going, even getting him in for, I mean, he was

391
00:33:47,440 --> 00:33:53,200
going in until 11. So then I topped up the homeschooling in the afternoons. And he was a

392
00:33:53,200 --> 00:33:59,040
little bit, he was actually a little better going back from after being at the Prue because they had

393
00:33:59,040 --> 00:34:05,920
given me the strategies. Right. I had spoken to them, said, like, how do you, how do you educate

394
00:34:05,920 --> 00:34:10,160
them? Like, what do you do? What do you not do that mainstream do? And they said, like, we don't do

395
00:34:10,160 --> 00:34:13,680
reward charts. Yeah, can we talk about some of the things because people have been listening to this

396
00:34:13,680 --> 00:34:20,160
thinking, I've got a child in my class, trans exactly like, what do you do? And what do you avoid?

397
00:34:20,160 --> 00:34:26,560
I mean, I saw generic, but some generic things that to try for children with a profile like this.

398
00:34:27,360 --> 00:34:34,160
The key is reward charts, expectation equals anxiety. So if you're expecting them to perform

399
00:34:34,160 --> 00:34:40,800
for a sticker, that then is going to instantly make them feel they are a failure straight away. So the

400
00:34:40,800 --> 00:34:46,480
anxieties there, I mean, you know, the zones of regulation chart is, I mean, we've probably been

401
00:34:46,480 --> 00:34:52,560
given over the years, about 15 of them, and they generally end up being torn up in a rage. It's

402
00:34:52,560 --> 00:34:58,800
just too much expectation. The irony of it is the fact that that is an expectation in itself. And,

403
00:34:58,800 --> 00:35:07,680
you know, PDA children, I have found with Maxi, he cannot long term goals, equal anxiety also,

404
00:35:07,680 --> 00:35:12,880
they can't see that far, they're very to the point in that moment, because the loss of control

405
00:35:12,880 --> 00:35:19,120
And he's not even having faith in himself that he can ever achieve that. Like, because he doesn't have the control over him.

406
00:35:19,120 --> 00:35:23,680
Yeah, this is it. So you could say, oh, you'll do swimming on Friday, if you're good, if you're good,

407
00:35:23,680 --> 00:35:30,480
swimming on Friday, and this is it. And he's like, I'm gonna be really naughty on the first day,

408
00:35:30,480 --> 00:35:34,960
I'm gonna do all the things that I know you don't like. Exactly. At least I've got an answer,

409
00:35:34,960 --> 00:35:40,800
because I'd rather know on Monday, than be good all that time, and then let myself down on a Friday,

410
00:35:40,800 --> 00:35:45,280
because I can't control this. I feel like that's the mentality, isn't it? And it's like a little

411
00:35:45,280 --> 00:35:51,920
carrot dangling, you know, it doesn't work. So we, I think, you know, men are starting to sort of

412
00:35:51,920 --> 00:35:58,400
really do, again, you know, we're still no further with ASD diagnosis, or anywhere along that, you

413
00:35:58,400 --> 00:36:03,840
know, because the lists and the waiting times is so astronomical at the moment. So I said to my husband,

414
00:36:03,840 --> 00:36:09,840
I'm just gonna have to, you know, do my own research, and, you know, start to, you know, start to find out,

415
00:36:11,200 --> 00:36:16,560
you know, what works and what doesn't. I know what works with my own child, like, how can I adapt that?

416
00:36:16,560 --> 00:36:20,560
Because I work in learning and development anyway, and I sort of thought, you know, that it's not that

417
00:36:20,560 --> 00:36:26,000
hard, you know, there must be a way. I think the top thing to do is the strewing method, you know,

418
00:36:26,000 --> 00:36:31,520
PDA children have a loss of autonomy, so they need to be, feel that they are in control at all times,

419
00:36:31,520 --> 00:36:35,840
otherwise they go into fight, flight or freeze. And that's, you know, when we noticed when he was

420
00:36:35,840 --> 00:36:40,160
at mainstream, it's like, you need to sit here, and you need to finish this, and you can't go and get

421
00:36:40,160 --> 00:36:44,960
a snack until you've written X, Y and Z. They run mainstream, but with control and compliance,

422
00:36:44,960 --> 00:36:50,160
don't they? Yes, totally. One teacher, control and compliance. And it obviously has to work,

423
00:36:50,160 --> 00:36:53,200
because, you know, there's a lot of children and there's, you know, they have to be able to...

424
00:36:53,200 --> 00:36:56,160
It doesn't work for some. No, and it has to be, you know...

425
00:36:56,880 --> 00:37:00,160
So what's the strewing method? How does that, what does that look like? What does that sound like?

426
00:37:00,160 --> 00:37:04,880
The strewing method is just so basic. The strewing method is, you know, because this is the

427
00:37:04,880 --> 00:37:11,680
other thing, PDA children are more than capable to, you know, Max is, you know, doing Key Stage 1,

428
00:37:11,680 --> 00:37:16,640
and he is capable of Key Stage 1, and probably Key Stage 2 for a certain extent, because he's

429
00:37:16,640 --> 00:37:21,280
obviously of his age, but it's how it's positioned. So the strewing method is, you know, you've always

430
00:37:21,280 --> 00:37:25,440
got to just think that whatever options you give them, it's a win-win situation for you as the

431
00:37:25,440 --> 00:37:30,480
educator or the parent, you know, if you're homeschooling. So just get, you know, five to

432
00:37:30,480 --> 00:37:35,040
six different types of activities, and you just chuck them on the table. And there's no saying,

433
00:37:35,040 --> 00:37:38,080
right, you're doing this first, and then you're doing that, you're doing that, and then we're

434
00:37:38,080 --> 00:37:42,800
doing this. It's, there's all the stuff. Why don't you have a look and you decide what we're going to

435
00:37:42,800 --> 00:37:48,240
do? Yeah. What's the most fun for you? What do you want to do? You don't mind what they choose.

436
00:37:48,240 --> 00:37:52,800
Because it's a win-win, because every activity you're giving them, even if they choose the one

437
00:37:52,800 --> 00:37:54,960
that you don't really want to do. So you're going to work on the sofa, or you're going to work on

438
00:37:54,960 --> 00:37:59,600
the bar store today? You're going to use a pen or a pencil? Is it that kind of language? And it's,

439
00:37:59,600 --> 00:38:02,480
you know, where do we want to sit? Are we sitting at the table, or are we sitting on the carpet?

440
00:38:02,480 --> 00:38:06,640
Well, if we're doing colouring, how about maybe we sit on the table? Because you don't mind what you

441
00:38:06,640 --> 00:38:12,640
choose as long as you're doing it. Yeah. Yeah. But even in the choice of, are we building Lego? Are we

442
00:38:12,640 --> 00:38:17,760
doing like rhyming words? Are we doing crosswords? You know, are we doing phonics crosswords? But

443
00:38:17,760 --> 00:38:22,240
having everything out, or are we just doing colouring? You know, what? But having it all out

444
00:38:22,240 --> 00:38:28,160
of choice, and then they decide, you know, oh, I'm going to do this now. And that is the key that we

445
00:38:28,160 --> 00:38:35,040
found is by giving them, because like I said, they are totally capable of doing the work. Yeah. That

446
00:38:35,040 --> 00:38:39,680
has never been a question. It's never been a question. It's the negotiation beforehand,

447
00:38:39,680 --> 00:38:43,840
that pressure, isn't it? That demand and expectation, like you were saying before.

448
00:38:43,840 --> 00:38:49,280
And it's the language used. There's a few key words that you just really can't say with Maxi,

449
00:38:49,280 --> 00:38:54,320
you know, which again, think, you know, once the diagnosis is confirmed, the PD elements,

450
00:38:54,320 --> 00:39:01,360
you cannot say, you can't, you must, it has to be, I wonder if you can find

451
00:39:01,360 --> 00:39:09,280
10 words in that word search. I bet you can't. Again, it's that trickery to their brain.

452
00:39:09,280 --> 00:39:15,280
So it's more spoken by him and more, I wonder, what would it be like for him?

453
00:39:15,280 --> 00:39:23,200
How do you, how do you, how do you spell cat? I don't know. And sometimes it's really, you know,

454
00:39:23,200 --> 00:39:26,560
and I can see how mainstream education establishments can't do it, because you,

455
00:39:26,560 --> 00:39:31,760
I mean, using declarative language, it takes a bit of getting used to. So that's what it's called, declarative language.

456
00:39:31,760 --> 00:39:35,520
Declarative language. And it takes a lot of getting used to, because, you know, I've got

457
00:39:35,520 --> 00:39:38,240
another three, you know, another two kids, there's three of them. And I'm like, get your shoes on,

458
00:39:38,240 --> 00:39:41,840
we've got to get ready, get your bag. Where's your school bag? Where's your lunch? What are you taking?

459
00:39:41,840 --> 00:39:46,880
With Max, it's, you know, how quickly can we get your shoes on before the transport comes?

460
00:39:46,880 --> 00:39:51,120
I wonder if you can get, you know, and sometimes you just get caught out, you know, you're a parent.

461
00:39:51,120 --> 00:39:55,520
Of course you do. We're not robots. Of course we all get caught out. Of course you do. And another

462
00:39:55,520 --> 00:40:01,040
thing is what we found in terms of routine, Max does have a routine, but again, you need to

463
00:40:01,040 --> 00:40:07,840
steer on the side of caution that when, when it comes to getting ready in the mornings,

464
00:40:07,840 --> 00:40:13,920
obviously, if you think about how many requests you say to them, that you need to, it's a demand

465
00:40:13,920 --> 00:40:17,120
for getting up. They haven't breakfast, they've got to brush their teeth, they've got to get the

466
00:40:17,120 --> 00:40:22,640
inform on. What we've found is leading everything out the night before is a nonverbal prompt

467
00:40:22,640 --> 00:40:27,920
that tells him when I wake up in the morning, my uniform's on the dining room table. So that means

468
00:40:27,920 --> 00:40:31,760
I've got to go to school and I've got to put that on. And no one's telling me, no one's confronting

469
00:40:31,760 --> 00:40:38,240
me, no one's rushing me. It's the norm now in our house, you know, they come downstairs, they sit and

470
00:40:38,240 --> 00:40:44,720
do the, you know, they sit and watch a bit of TV and then have breakfast, they get dressed and it's,

471
00:40:44,720 --> 00:40:49,280
you know, and it's a nonverbal, you know, you're not telling him that he's got to do something.

472
00:40:49,280 --> 00:40:57,520
We, you know, he, when they came, when he came back from the prune and lasted at school,

473
00:40:58,560 --> 00:41:04,000
we ended up actually cutting him down three days a week to one hour a day, because like we were told,

474
00:41:04,000 --> 00:41:08,960
do not, do not take him off. So I said, you know what, I'm just going to take him out of school

475
00:41:08,960 --> 00:41:14,000
full time and I'll just homeschool him. You know, because it had gone far, you know, all these

476
00:41:14,000 --> 00:41:19,760
peaks and troughs, it was all right one month, then it wasn't, then he was at the PIIU and then it was okay and then he went back and it was just carning.

477
00:41:19,760 --> 00:41:26,000
It's so much just getting ready to leave for school just for an hour, like all those demands, like you were saying,

478
00:41:26,000 --> 00:41:30,000
shoes on, toothbrush, get up, you know, just for an hour to then go home.

479
00:41:30,000 --> 00:41:36,000
Get to school, get home and I was like, I've got about 40 minutes before I need to go back to school. So you were getting nothing done.

480
00:41:36,000 --> 00:41:38,000
Yeah.

481
00:41:38,000 --> 00:41:54,000
So we, and then again, we obviously, our case officer said, look, listen, we do basically have a effective pattern now of when he's not at school and he's in the right environment from going to the prune,

482
00:41:54,000 --> 00:42:04,000
this is actually, this meets his need. So then, you know, we spent five months looking for schools, specialist schools.

483
00:42:04,000 --> 00:42:22,000
You know, again, I think I've looked at 14 and there were specialist schools, ASD schools and the majority, I think, apart from one said, if they've got a PDA profile, we can't meet need because it's, because it's child led learning and we don't have the facility.

484
00:42:22,000 --> 00:42:28,000
I wasn't expecting that because we, that definitely wouldn't be our reason for saying no, even though we would still say no to a child like Max.

485
00:42:28,000 --> 00:42:37,000
We wouldn't say no because of his PDA at all. What we would say no to is because he's too bright, he's too clever.

486
00:42:37,000 --> 00:42:44,000
He wouldn't, we wouldn't be able to meet his academic need. We'd be able to meet his emotional, social learning style.

487
00:42:44,000 --> 00:42:52,000
We wouldn't be able to meet his academic need. We wouldn't be able to offer him enough as far as academic learning.

488
00:42:52,000 --> 00:43:02,000
That would be why we would have to say no. So yeah, we know. And then we found an SEMH school. So this is all now. This is all in the summer holiday.

489
00:43:02,000 --> 00:43:20,000
It is mental health, isn't it? It is mental health. And we found, you know, we'd gone to a school and then I just randomly one night, you know, you look on the, you look on the local authorities list of specialist schools and you're like, okay, I've done this one, I've gone off the list.

490
00:43:20,000 --> 00:43:32,000
And then we were looking at non maintained independent and our case officer was like, some are great, some aren't. Some are great, some aren't. She said, alternative provisions as well, some are great, some aren't.

491
00:43:32,000 --> 00:43:42,000
So trying to get like our local authority to, with a non maintained independent, she said, oh, it is going to, we're going to really, really struggle. So panel, it's so expensive.

492
00:43:42,000 --> 00:43:52,000
And that's what it basically comes down to. How much money are they, how much money are they going to, how much money are they prepared to cough up on a child? So basically we, we're just back and forth.

493
00:43:52,000 --> 00:44:02,000
And we sort of said, look, you know, for us, we know that Maxie can survive with other children. Like he does not have any social issues.

494
00:44:02,000 --> 00:44:25,000
It is the emotional and the mental health issue that he can't cope with because of the PDA. Yeah. So in the right environment, socially, he can manage really well. Yeah. And now we've got this quantitative evidence that when he was at a prune, which reflects, we, you know, and I remember thinking, I said to Darren, I'm so glad that we kept him in school and we basically didn't refuse it.

495
00:44:25,000 --> 00:44:45,000
Because that was the proof you needed in order to say this is what meets his need. Yeah. Without that, it would just be your say so. Yep. So it went to panel twice. They sort of, you know, we went to panel twice and there was a lot of, you know, as you've probably guessed, there was a lot of, well, don't know, mmm, ahh, mmm, ahh.

496
00:44:45,000 --> 00:45:03,000
And we found, you know, just constantly looking at schools and then, but the main issue that we, that we found is that across Surrey, a lot of the schools that can take PDA children, the intake isn't until year three, because that's generally when a child has a diagnosis is when they're eight.

497
00:45:03,000 --> 00:45:18,000
Interesting. So we were then found all these amazing, you know, non maintained schools, we found, you know, really good mainstream specialist school, a public sort of public sector mainstream specialist schools that were not non maintained.

498
00:45:18,000 --> 00:45:26,000
And they said, we don't take them to year three, you've got another year. And I was thinking, we cannot, he's not been at school for two years.

499
00:45:26,000 --> 00:45:33,000
No, we've just sort of put a plaster on over the car, you know, we just hope for the best, but now it's getting to the longer he's away from.

500
00:45:33,000 --> 00:45:37,000
And you're thinking, where are we going to be in a year if we have to carry on this cycle?

501
00:45:37,000 --> 00:45:43,000
Because, you know, he would basically then got himself kind of, you know, the back end of that term, he kind of got himself into burnout.

502
00:45:43,000 --> 00:45:58,000
You know, he didn't want he didn't want to go to school, he didn't want to get off the sofa when he got in, he just didn't he was resisting to everything. And then we found a SEMH school and I think just by pure stroke of luck, I mean, they came out, we went and visited them.

503
00:45:58,000 --> 00:46:22,000
And then we took Maxi, and they sort of did, you know, like, you know, he's currently there now. And, you know, again, they sort of said, we don't think we can meet need because he's, you know, he's more early years foundation and we sort of stood our ground and argued because he's not been in school for two years, he has the capability to be able to catch up.

504
00:46:22,000 --> 00:46:34,000
So then they came to, you know, on the day that we went to go and visit his school, I mean, it was in terms of going to look at a specialist school for a child that has additional needs.

505
00:46:34,000 --> 00:46:48,000
So the fire alarm went off halfway through so we got evacuated from school. So then Max was like, what's going on? Am I coming to this school? Because we'd always been very, very honest with him and we said that we don't feel that mainstream is the right option.

506
00:46:48,000 --> 00:46:59,000
It stresses you out, you don't like it. And now that you've been to this other school, this amazing crew, we know that you love being in a smaller class.

507
00:46:59,000 --> 00:47:11,000
We found that really validating here in that because that's probably how he was feeling in his body. So to have the people closest to him agreeing with him that this feels right for you, we can see that this feels right for you or this doesn't feel right for you, we can see this doesn't feel right for you.

508
00:47:11,000 --> 00:47:23,000
It's really incredibly validating. And we just sort of fix it, just knowing that you can see. And I said to Max, I remind her, you are not going back to the mainstream classroom environment.

509
00:47:23,000 --> 00:47:40,000
But then what had happened when he had gone back from the proo, were the stress that it then caused his twin brother, because Max was dysregulated and then he could hear it because it's this open plan primary school, we then ended up sort of manifesting and snowballing at home because Jake was then so upset.

510
00:47:40,000 --> 00:47:44,000
That his twin brother was constantly outside, you know, doing walking weights.

511
00:47:44,000 --> 00:47:54,000
And he felt protective and he was like, what's going on? So when we went to look at the specialist school, they rejected us and then we argued it.

512
00:47:54,000 --> 00:48:05,000
And they came to, they came and visited him at mainstream one quick half an hour. And again, they sort of rejected and I sort of, and I said to panel, I said to our case, I'm not having this now.

513
00:48:05,000 --> 00:48:23,000
I said, it's unacceptable. And I became, but then I became that parent that you have to, they give you no choice. I literally made two formal complaints and I reported them to the LGOS and that basically stuck a rocket up.

514
00:48:23,000 --> 00:48:36,000
And then literally I did all that the week before they was going back to panel for the third time. Lo and behold, their panel name, the specialist school that we've been to see.

515
00:48:36,000 --> 00:48:50,000
Yeah, he, you know, they sort of said, you know, their main issue was that he was not where he should have been, you know, academically. And I said, well, that's because he's not been at school for two years.

516
00:48:50,000 --> 00:48:55,000
And also like ultimately mental health has to come first.

517
00:48:55,000 --> 00:49:03,000
You know, surely that needs to be the focus academic learning come second. So supporting with his mental health and his emotional regulation and all of those things that they're obviously really good at.

518
00:49:03,000 --> 00:49:08,000
But then again, yeah, and then pick up the pieces.

519
00:49:08,000 --> 00:49:16,000
So that was at the start of the summer holidays last year. And obviously, as you know, everything, nothing then happened for six and a half weeks because.

520
00:49:16,000 --> 00:49:29,000
So how did they come into this new situation? Well, kind of because they obviously then came back and there was, you know, a few issues with funding being released from our local authority to the specialist school.

521
00:49:29,000 --> 00:49:39,000
What that I know I was thinking, could this get any more bonkers, you know, we've finally now managed to get the school named and the headmaster called me.

522
00:49:39,000 --> 00:49:54,000
And I found out that the headmaster was the previous headmaster of the crew that he'd attended. And basically, like long story short, the school that Maxi is now in basically was shut down by offset immediately for being unsatisfactory.

523
00:49:54,000 --> 00:50:09,000
So I think just in our our luck, they had then sacked everybody, basically the completely new entire set of staff from the trust level, from the higher, from board level all the way down.

524
00:50:09,000 --> 00:50:15,000
Good for the children because if they were unsafe, not meeting needs, it was dangerous, unsafe.

525
00:50:15,000 --> 00:50:25,000
And it was going to, and it was, I think, so infuriating and upsetting for you. It came, but we didn't really, we didn't really know any of this.

526
00:50:25,000 --> 00:50:30,000
And it wasn't until I was chatting to somebody else and said, oh, he's gotten, he's gotten into this school.

527
00:50:30,000 --> 00:50:45,000
And she said, wasn't that so and so and basically they obviously had to change the name. I think it was closed for about 10 months while they recruited, restaffed, changed everything and they basically then took the old headmaster from what was the crew.

528
00:50:45,000 --> 00:50:56,000
So I then spoke to the old headmistress at the crew and she said, listen, you know, the school had had a bad reputation. She said, but now they can only go up.

529
00:50:56,000 --> 00:51:05,000
They can only go up. She said a lot of guidance and support and lots of eyes on them to make sure they do. So it's probably quite a good position to be in.

530
00:51:05,000 --> 00:51:18,000
And it was, we just thought, wow, we've really, you know, this is a real added bonus that because the reputation has followed it, people are more reluctant to not send them.

531
00:51:18,000 --> 00:51:27,000
So I think that was a massive factor that we'd gotten in. So it was, you know, a blessing to a certain extent.

532
00:51:27,000 --> 00:51:30,000
But you know, what was he doing? One, turn me in to this new school.

533
00:51:30,000 --> 00:51:39,000
So he started, he didn't, so we never sent him back to mainstream because we knew that the LA had named the specialist school.

534
00:51:39,000 --> 00:51:46,000
I just said to my husband, if he doesn't start until January 2025, we keep him off for another three months. You know, he's had such disruptors.

535
00:51:46,000 --> 00:51:49,000
It's been named. Yeah. You know, we've basically homeschooled him.

536
00:51:49,000 --> 00:51:53,000
Yeah, he has been out school, but he hasn't done any schoolwork at school.

537
00:51:53,000 --> 00:51:57,000
It was just a box ticking exercise because we didn't want him off roll for two years.

538
00:51:57,000 --> 00:52:06,000
So he got the say so, we got the dates that he started on the 1st of October and then he had a phased introduction, but he did so well.

539
00:52:06,000 --> 00:52:12,000
And the phased introduction was only supposed to be until the start of November and sort of two weeks in.

540
00:52:12,000 --> 00:52:19,000
The headmaster called me and he said, listen, he said, he's doing so well and he can just start full time next week.

541
00:52:19,000 --> 00:52:22,000
So he's gone. So this is, yes, this is what I just said.

542
00:52:22,000 --> 00:52:26,000
It all doesn't it? So this is his well, this is the end of this. Yeah. January.

543
00:52:26,000 --> 00:52:33,000
This is his first third month ever at school and there he'll be eight in October.

544
00:52:33,000 --> 00:52:36,000
So it just makes that right.

545
00:52:36,000 --> 00:52:45,000
There is so much to say about this, isn't there? Because thank goodness for Senko was knowledgeable enough and gave you the advice of sticking on roll.

546
00:52:45,000 --> 00:52:47,000
That would have been such a different situation.

547
00:52:47,000 --> 00:52:52,000
But even Senko from mainstream, she said, I do not know much about PDA.

548
00:52:52,000 --> 00:53:02,000
She said, in fact, I don't know nothing about it. She said, because the problem is, she said, because his behavior is so explosive and disruptive, she said, we physically, we can't have him in school.

549
00:53:02,000 --> 00:53:14,000
And if he gets permanently excluded, she said, she said, if you know, and this is what I say to, you know, I've become now in this community, I get a lot of questions and I say, well, I'm just going to take him off roll.

550
00:53:14,000 --> 00:53:19,000
And I say to everybody, do not. I totally understand why they're feeling like that.

551
00:53:19,000 --> 00:53:25,000
Totally. And you think I say, oh, you know, yeah, that makes that makes sense.

552
00:53:25,000 --> 00:53:29,000
But it's absolutely a no, no. Even if you can, you know, read it.

553
00:53:29,000 --> 00:53:32,000
It's absolutely a no, no. Even if you can, you know, read it.

554
00:53:32,000 --> 00:53:34,000
And I think that's a really good point.

555
00:53:34,000 --> 00:53:39,000
Because it puts the responsibility of finding suitable education on the parent.

556
00:53:39,000 --> 00:53:45,000
Whereas if they're still exactly the responsibility is with the local authority and therefore so is the funding.

557
00:53:45,000 --> 00:53:52,000
There is the searching, there is the court, all of that is all paid for and exactly by the local authority.

558
00:53:52,000 --> 00:53:59,000
And I tell you what, Jordan, there were times where the countless emails, the reading of SendLaw that.

559
00:53:59,000 --> 00:54:05,000
Let's just say there is no judgment with parents that listen to this, that have a child with a PDA profile who have decided to homeschool.

560
00:54:05,000 --> 00:54:08,000
There is absolutely no judgment. There's a lot of people that do it though.

561
00:54:08,000 --> 00:54:12,000
I've seen it and I'm gutted that you have been let down so much,

562
00:54:12,000 --> 00:54:15,000
you've hardly been let down so much to the point of you've had to do it.

563
00:54:15,000 --> 00:54:19,000
And I really hope that this is the right decision for you.

564
00:54:19,000 --> 00:54:23,000
And it obviously was at the time, because otherwise you wouldn't have done it. So there is no judgment here.

565
00:54:23,000 --> 00:54:24,000
No, not at all.

566
00:54:24,000 --> 00:54:31,000
The system, the children have to fail and being made to fail so badly in order to get the help they need.

567
00:54:31,000 --> 00:54:32,000
It's just so unfair.

568
00:54:32,000 --> 00:54:39,000
So, you know, another thing, I think the only reason that we have been so lucky is that we live in Surrey.

569
00:54:39,000 --> 00:54:47,000
We live in a big county. There is a lot of schools there, you know, even though we were clutching at straws in terms of trying to find them.

570
00:54:47,000 --> 00:54:53,000
Even in other parts of the country, it's just a battle. You are going to have no option to.

571
00:54:53,000 --> 00:54:58,000
Yeah, we've got one special school in the whole of Cornwall, one special school.

572
00:54:58,000 --> 00:54:59,000
That's insane.

573
00:54:59,000 --> 00:55:05,000
So if your child doesn't fit the special school mould, which none of my people do, they're just going to school.

574
00:55:05,000 --> 00:55:10,000
So, yeah, I've had the last three year sevens, I've had to leave my primary school, I've gone to no school.

575
00:55:10,000 --> 00:55:15,000
Similar situation to you, but they're 11. It's just, it's shocking. It's absolutely shocking.

576
00:55:15,000 --> 00:55:19,000
You know, it's just the whole thing is just. It's really unfortunate.

577
00:55:19,000 --> 00:55:20,000
It's a bit of a long gutted for the parents.

578
00:55:20,000 --> 00:55:22,000
And I think the stress that it puts on parents.

579
00:55:22,000 --> 00:55:23,000
Absolutely.

580
00:55:23,000 --> 00:55:33,000
You know, I was lucky, my husband and I, we both work for big corporations, you know, we're like quite kind of not protected, but the flexible working, inclusion and diversity.

581
00:55:33,000 --> 00:55:43,000
There's a massive push on big corporations and that kind of saved us because, you know, I basically, you know, unbeknown to our local authority, you know, we're about twelve thousand pounds out of profit.

582
00:55:43,000 --> 00:55:48,000
Because we've had to pay for extra childcare. We've had to take unpaid parental leave. We've had to take annual leave.

583
00:55:48,000 --> 00:55:50,000
We've had to pay for this extra stuff.

584
00:55:50,000 --> 00:55:53,000
Yes, there's financial stress and emotional stress.

585
00:55:53,000 --> 00:56:06,000
And it's like, in the back of your mind, am I going to get sacked from my job because I'm really not, you know, not even though we were always very straight up and transparent with our employers, there's always that bit in the back of your mind.

586
00:56:06,000 --> 00:56:10,000
Are they going to, is she just, you know, is she becoming problematic now because of her kids?

587
00:56:10,000 --> 00:56:15,000
And you're raising with your child as well because, you know, it's trying to navigate that.

588
00:56:15,000 --> 00:56:26,000
It's home with homeschooling or, you know, any demand to try and get them into school because, you know, you have to, you know, all of that is just, there's such a big mess to unravel.

589
00:56:26,000 --> 00:56:35,000
And also, you know, if, you know, and I'm not throwing local authorities under the bus, but there is an element of, you know, that is the main issue, you know.

590
00:56:35,000 --> 00:56:44,000
If you do not have, we were quite fortunate, our case officer has got a child with PDA and she's got another child who's neurodivergent.

591
00:56:44,000 --> 00:56:54,000
And it was like all aligned, but there are these case officers, they have up to 250 children, plus they are...

592
00:56:54,000 --> 00:57:01,000
We've got, I only know from Count Cornwall that there's 18 case officers and there's five and a half thousand children on their case.

593
00:57:01,000 --> 00:57:04,000
Of course, that's even more insane.

594
00:57:04,000 --> 00:57:13,000
So how would they ever, how could they ever put the time in to support these families, to support these children, to find suitable education, you know, 500,000...

595
00:57:13,000 --> 00:57:15,000
It's not effective. It is not effective.

596
00:57:15,000 --> 00:57:22,000
And they're the ones who own it, they're the ones with EHCPs. That doesn't even include the ones without EHCPs. It's just, it is just off the scale.

597
00:57:22,000 --> 00:57:35,000
And I think, you know, with PDA children, it's estimated. I mean, this is an estimate. And I was chatting to another teacher the other day and I was saying 70%, 70, 70 are not in education of PDA children.

598
00:57:35,000 --> 00:57:37,000
Wow, that is huge.

599
00:57:37,000 --> 00:57:43,000
That is, but again, the numbers are this in this grey area because of the diagnosis.

600
00:57:43,000 --> 00:57:52,000
If parents choose in to homeschool before they get a diagnosis, then does that count because they might not ever go for diagnosis.

601
00:57:52,000 --> 00:57:59,000
But then what is their diagnosis? Are they going off the homeschooling number because it's ASD or Radio HD?

602
00:57:59,000 --> 00:58:05,000
You were saying, I suppose, like just to round off really, you were saying that the Senco doesn't know as much.

603
00:58:05,000 --> 00:58:09,000
There's a PDA society, but again, there's not much information out there.

604
00:58:09,000 --> 00:58:28,000
You go on the PDA society and, you know, there's an acronym called the PANDA approach, which is, you know, you know, if you are a teacher or a parent and you are, you know, you're seeing like, you know, these traits of a PDA child, like the PANDA approach is one of, is probably the best things.

605
00:58:28,000 --> 00:58:35,000
I keep it on my phone so that I can send it to you because I think it's brilliant.

606
00:58:35,000 --> 00:58:38,000
Here we go.

607
00:58:38,000 --> 00:58:49,000
So we've got pick battles, adaptation, disguise and manage demands, negotiation and collaboration and anxiety management.

608
00:58:49,000 --> 00:58:54,000
Are helpful approaches to support children, aren't they?

609
00:58:54,000 --> 00:59:05,000
I would say, you know, what we have realised and I say to any people, my Instagram, I get now, I am getting hundreds of messages a week from teachers.

610
00:59:05,000 --> 00:59:12,000
And primary and secondary and parents and my top tip to any of them is think your battles wisely.

611
00:59:12,000 --> 00:59:18,000
If they don't want to sit at the table and they want to sit on the floor, really, what's the issue with that?

612
00:59:18,000 --> 00:59:20,000
What's the issue? Who cares?

613
00:59:20,000 --> 00:59:21,000
That's a parent.

614
00:59:21,000 --> 00:59:26,000
Maxi sometimes, dinner time in our house can be when it all falls apart.

615
00:59:26,000 --> 00:59:30,000
You know, my eldest son, you know, there's an element and he's like, well, no, Maxi doesn't look autistic.

616
00:59:30,000 --> 00:59:33,000
And I'm like, well, you know, not all children.

617
00:59:33,000 --> 00:59:35,000
That's just that age, you know, he's a teenager.

618
00:59:35,000 --> 00:59:38,000
So it's the idea of making reasonable adjustments, isn't it?

619
00:59:38,000 --> 00:59:50,000
So if there's a teacher listening to this with a child that sounds similar to Maxi in your class or your parent and you want strategies, make reasonable adjustments to support the child.

620
00:59:50,000 --> 00:59:53,000
So if you want them, if it's really important that they complete this work.

621
00:59:53,000 --> 00:59:57,000
Is it do or die? Is there going to be? Is it really?

622
00:59:57,000 --> 01:00:04,000
Let's adapt the work task to make it more fun or suitable. Could you offer more than one work task that they can make a choice?

623
01:00:04,000 --> 01:00:06,000
Could they do it with their shoes off? Could they do it on the carpet?

624
01:00:06,000 --> 01:00:09,000
Could they do it at a different time when the other two are playing time?

625
01:00:09,000 --> 01:00:19,000
Can they finish it? You know, and what we've noticed with Maxi's specialist school is that they don't do reward charts, but they do sort of entice them in.

626
01:00:19,000 --> 01:00:30,000
If we can get our like core, you know, reading and writing work done, then you can play on scratch and you can do stuff. So there is a motivator and an incentive.

627
01:00:30,000 --> 01:00:33,000
We all need a motivator and incentive. That's why we get paid to do work.

628
01:00:33,000 --> 01:00:41,000
There is a motivator there. It's just it needs to be in collaboration with the child, doesn't it? Rather than in control and conflict in that way.

629
01:00:41,000 --> 01:00:51,000
And there is an element of Maxi's school that they do have a point system. But, you know, Maxi does work quite well on a point system.

630
01:00:51,000 --> 01:00:57,000
And it allows him. He doesn't lose the point. And this is the key.

631
01:00:57,000 --> 01:01:02,000
You don't get them taken away. You don't get that like on a reward chart. It's like we did this yesterday. We didn't do this today.

632
01:01:02,000 --> 01:01:09,000
I hate it when they never get the thing. I like motivating because I think it needs to be short, sharp, burst.

633
01:01:09,000 --> 01:01:12,000
Short, sharp, you get it and then you start again and then you get it.

634
01:01:12,000 --> 01:01:17,000
This is exactly how they do it. It will be A, it will be B, it will either be B.

635
01:01:17,000 --> 01:01:22,000
There's a couple of it from when you see it's really hard to try and get out of a seven year old kid as well.

636
01:01:22,000 --> 01:01:26,000
What do you actually do at your school? And he's like, oh, I can't remember what I've done all day.

637
01:01:26,000 --> 01:01:29,000
And you think, God, it's just I remember being like, you know, sick.

638
01:01:29,000 --> 01:01:33,000
It means he'll do a lesson, he'll learn his reward and he'll get his reward. Lesson, learn his reward, get his reward.

639
01:01:33,000 --> 01:01:39,000
So, you know, there's always an offer or maybe we can do this, but they can get points at anything, you know, just like tidying up.

640
01:01:39,000 --> 01:01:45,000
Yeah. Yeah. Little like course. Great question. Great thinking. Yeah. Oh, wow. That was really kind you did that.

641
01:01:45,000 --> 01:01:51,000
Yeah. Find the positive, find what they're doing well rather than looking for what they're not doing well.

642
01:01:51,000 --> 01:01:59,000
And I think that's really great advice. And that's another sort of key sort of piece of advice is praising them for participating

643
01:01:59,000 --> 01:02:04,000
because a lot of, you know, maxi, they have a really low self-esteem also.

644
01:02:04,000 --> 01:02:11,000
And, you know, low self-esteem, even before they've been through maybe quite a traumatic education experience already.

645
01:02:11,000 --> 01:02:15,000
So just even they're picking up the pen. Oh, wow. Well done.

646
01:02:15,000 --> 01:02:21,000
You know, and it's about they suffer from really low self-esteem. Self-esteem is obviously linked to anxiety.

647
01:02:21,000 --> 01:02:25,000
They've always been told and it's probably down to experiences as well, right?

648
01:02:25,000 --> 01:02:32,000
They've always been not good enough or not quite reaching the mark. And I think because they've been tantalised.

649
01:02:32,000 --> 01:02:39,000
And if they've been through the mainstream school, you know, there were some children that, you know,

650
01:02:39,000 --> 01:02:49,000
managed to survive in mainstream and I'm not saying it's totally not viable, but I think a PDA child can to a certain extent.

651
01:02:49,000 --> 01:02:52,000
With the right scaffolding, with the right support, with the right environment.

652
01:02:52,000 --> 01:02:59,000
If it's a small class, if there's a lot of TAs, you know, if they're a teacher that are understanding about the PDA profile,

653
01:02:59,000 --> 01:03:03,000
if they're reasonable adjustments made, you know, all of those things.

654
01:03:03,000 --> 01:03:11,000
Then there may be a possibility. But at some point, you know, my experience of what I have been sent and, you know,

655
01:03:11,000 --> 01:03:17,000
messages that I've read and emails is, you know, this is the masking.

656
01:03:17,000 --> 01:03:23,000
Talking about your audience, because you've built a really strong audience of parents and teachers that are passionate about PDA

657
01:03:23,000 --> 01:03:27,000
and want to learn more. And you're creating something, aren't you, in order to support them?

658
01:03:27,000 --> 01:03:29,000
Shall we finish talking about that a little bit?

659
01:03:29,000 --> 01:03:36,000
Yes. I think the one thing that we have struggled and still struggle with is the lack of resources.

660
01:03:36,000 --> 01:03:44,000
And I've been reading a really amazing book by, she names Professor Elizabeth Newson and she was a professor at Nottingham University.

661
01:03:44,000 --> 01:03:51,000
She's the one who through the A's had all these parents that their children had these ASD diagnosis and the parents were saying,

662
01:03:51,000 --> 01:03:55,000
there's just key elements of these traits that do not match my child.

663
01:03:55,000 --> 01:04:04,000
But this is there's something not quite right. And so she then investigated and did a research and said, you know, these children have PDA.

664
01:04:04,000 --> 01:04:08,000
No, this is this is going back to the 80s. But there's no support for you.

665
01:04:08,000 --> 01:04:18,000
There's obviously the PDA society, which are amazing. But I've set up. Yeah, it's a community, an online community where parents can have each other

666
01:04:18,000 --> 01:04:26,000
because, you know, there's so many support functions out there for parents of children who have got ASD, that have got ADHD, that have got ADD.

667
01:04:26,000 --> 01:04:29,000
But there is nothing really there in terms of there's no sort of...

668
01:04:29,000 --> 01:04:33,000
And there's no judgement on parents with a child with a PDA profile, isn't there?

669
01:04:33,000 --> 01:04:34,000
Yeah.

670
01:04:34,000 --> 01:04:35,000
So extreme in judgement.

671
01:04:35,000 --> 01:04:43,000
Because they look from the outside looking at typical naughty kids. They're defiant. They won't do something. You're in the shop.

672
01:04:43,000 --> 01:04:48,000
Letting them get a gentle parent and all of these kind of archaic beliefs. Yeah.

673
01:04:48,000 --> 01:04:54,000
Yeah. And no demand parenting is not about letting them get away with stuff. And it's not about letting them walk all over you.

674
01:04:54,000 --> 01:04:58,000
It's about teaching and guiding. Yeah. So, you know, we set it up.

675
01:04:58,000 --> 01:05:07,000
It's going to close actually on Thursday because I only want to open it two or three times a year because I want to keep it quite...

676
01:05:07,000 --> 01:05:10,000
Yeah. I can see why you want it to be safe.

677
01:05:10,000 --> 01:05:17,000
I want it to be safe because there's a lot of people, you know, mums and dads that feel, you know, that they are judged.

678
01:05:17,000 --> 01:05:21,000
But it's going to be there'll be guest speakers, but they'll also be, you know, do trainings.

679
01:05:21,000 --> 01:05:36,000
But it's also because the reality is, and like Professor Elizabeth Newsom has said from the start, no amount of clinical research is actually makes more sense than a parent of a child to a PDA child.

680
01:05:36,000 --> 01:05:44,000
Who experiences the day in and the day out, the little things, you know, the wrong cup being given for starters.

681
01:05:44,000 --> 01:05:54,000
The touching of remote control. And what a relief to know that you can be completely open and raw with somebody else who gets it without holding back in at all, actually.

682
01:05:54,000 --> 01:05:59,000
And knowing that you won't be faced with any blame or shame. Totally.

683
01:05:59,000 --> 01:06:03,000
Because they'll just be acceptance. It's pure acceptance, isn't it?

684
01:06:03,000 --> 01:06:14,000
And, you know, the ones that we felt incredibly alone in it, you know, it's just like trying to people say, well, what's wrong with Maxi? Why isn't he? I've got PDA and people are like, what's that?

685
01:06:14,000 --> 01:06:21,000
And it just got so, you know, it gets so frustrating trying to repeat it every time. Well, it's kind of like this. It's kind of like that.

686
01:06:21,000 --> 01:06:29,000
But, you know, again, that became very apparent very quickly from the get go with my Instagram that everybody was just, I just feel so lonely.

687
01:06:29,000 --> 01:06:33,000
We're walking on eggshells, we're broken. Yeah. And I just thought, you know what?

688
01:06:33,000 --> 01:06:43,000
If you've had a really bad day, or going through a really hard time, and you're going through the education fight or whatever it is, just knowing you've got an army of supporters that get it behind you.

689
01:06:43,000 --> 01:06:52,000
And it's not just you. You're doing all that you can. Have you tried this? Have you tried this? God, that must be so strengthening and important.

690
01:06:52,000 --> 01:07:03,000
And I said to Don, if there had just been some times, you know, during the whole, when we were really in the gutter of panic and despair, Don said to me, that's totally normal.

691
01:07:03,000 --> 01:07:10,000
Yeah. You know, just because he's thrown a cup at your head because you've told him to pick a pencil up, you know, and he's saying that he hates you.

692
01:07:10,000 --> 01:07:19,000
It's okay. It's okay. You know, this is the other great thing about PDA kids. They move on very quickly because of their resilience.

693
01:07:19,000 --> 01:07:29,000
And they love big as well. Like, can we talk about some of the good things? They love so big. They care so much about what you think of them, how you feel, relationships.

694
01:07:29,000 --> 01:07:33,000
And they have, they're so desperate to be loved, aren't they?

695
01:07:33,000 --> 01:07:45,000
So desperate to be loved. And I, you know, and I forget, I can't remember, I saw it online. No, actually I think it was at Peace Parents. I mean, Dr. Casey Enlich, I think her name is.

696
01:07:45,000 --> 01:07:54,000
She did a reel. She said, you know, when they're in that mode where they are pretty vile, she said, just remember that they are saying, just please love me.

697
01:07:54,000 --> 01:08:08,000
Can you just please love me? Just love me because I'm so frightened. That's the only reason that they get so out of control because they are, they are in fear that nobody basically, you know, that they're frightened, that nobody loves them.

698
01:08:08,000 --> 01:08:16,000
And I think that for me was one of the biggest things. I just thought that was like a mindset shift straight away. And I just thought, you know.

699
01:08:16,000 --> 01:08:19,000
I'm going to show you that you are loved and you are lovedable.

700
01:08:19,000 --> 01:08:29,000
If it's safe to do so, I say to parents, like, give them a physical hug, like, show them. And I always say to Maxie, you are so safe. Like, you've got nothing to worry about. This is, you are so safe.

701
01:08:29,000 --> 01:08:35,000
You can never do anything to make them not love you. It's so important to hear, isn't it?

702
01:08:35,000 --> 01:08:36,000
So important.

703
01:08:36,000 --> 01:08:41,000
This is such a great conversation to have and so important. Thank you so much for joining me, Jessie.

704
01:08:41,000 --> 01:08:43,000
Thank you for inviting me.

705
01:08:43,000 --> 01:08:52,000
I know that there are teachers and parents listening to this, either feeling validated that they're doing the right thing or confirmed that I knew they did, you know, I knew they did that.

706
01:08:52,000 --> 01:08:57,000
Where can they find you to find out more? Because I really think that they will, you know, come.

707
01:08:57,000 --> 01:09:05,000
Just literally, I read and respond to every single DM that I get on Instagram. And that is something that I've always wanted to do.

708
01:09:05,000 --> 01:09:07,000
Is that Mrs Jessie Towns with a Z?

709
01:09:07,000 --> 01:09:08,000
Yeah, that's with a Z.

710
01:09:08,000 --> 01:09:12,000
I'm so pleased that you're out here doing this. Yeah, it really is amazing. And it feels even more important.

711
01:09:12,000 --> 01:09:13,000
Thank you.

712
01:09:13,000 --> 01:09:16,000
It comes from a parent who's lived it.

713
01:09:16,000 --> 01:09:25,000
And I remember I did the first reel and, you know, first reel had about 10 and a half thousand people view it and then the messages start coming.

714
01:09:25,000 --> 01:09:29,000
I bet people are thinking, finally! So much talking about it.

715
01:09:29,000 --> 01:09:33,000
And it's just a crazy journey at times. You think, wow.

716
01:09:33,000 --> 01:09:37,000
I'm so pleased you're doing it. And I'm so pleased that I have somewhere to send all the people.

717
01:09:37,000 --> 01:09:38,000
Yeah, do it.

718
01:09:38,000 --> 01:09:42,000
I will. I will. I will. Thank you so much for joining me on a Monday, Jessie.

719
01:09:42,000 --> 01:09:44,000
Thank you. Thank you for inviting me, Jordan.

720
01:09:44,000 --> 01:09:50,000
Of course. Anytime. I feel like we could chat for a long time and I feel like I need to get you back on and we need to discuss even more.

721
01:09:50,000 --> 01:09:51,000
Yes, let's.

722
01:09:51,000 --> 01:09:52,000
See you next year and see how this journey's going.

723
01:09:52,000 --> 01:09:55,000
Yeah, let's do it in a year's time and see how we're getting on.

724
01:09:55,000 --> 01:09:56,000
Deal.

725
01:09:56,000 --> 01:09:58,000
Amazing. Perfect. Thank you so much, Jordan.

726
01:09:58,000 --> 01:09:59,000
See you next year. Have a good evening.

727
01:09:59,000 --> 01:10:00,000
And you. Bye.

728
01:10:00,000 --> 01:10:05,000
Bye.