Autism, PDA & Masking in School – One Mum’s Journey to Diagnosis and Fighting for Her Neurodivergent Children

Transcript

Christine (00:00)

The need for the diagnosis was really for him, you know, and for others, like for the rest of the world. It’s very much like, you know, he’s not a badly behaved child and I’m not a bad mum, you know, because that’s kind of how you feel when you’re out and about and you feel very judged. And I think that I just wanted him to grow up not thinking that there was anything wrong with him. You know, he’s just different.

Alis (00:25)

Welcome Christine and thank you for your time today talking to us at Nip in the Bud. Can we start off just by hearing a little bit about your background and why we’re talking today?

Christine (00:36)

Thank you very much for having me here today. So I’m Christine. I have two children who are autistic, one undiagnosed and one with a profile of PDA. ⁓ And yeah, I just wanted to be able to share my story as to why, you know, as to be able to help others. Because I feel like as a SEND parent, it is quite isolating and it’s actually really nice to be able to sort of share stories as to the background and to help others that might not know. So one child with the PDA is seven and the undiagnosed child is 11. So they are going into secondary school in September and it’s quite common for some autistic children to mask quite a lot through their younger years.

And then when they come into secondary school, actually they can’t mask ⁓ anymore. They find it more difficult because of the big transition that it is. So we’re finding that actually his ⁓ autism is coming out quite strongly in himself and his anxiety. So we have been talking to the school that he’s going to in September about getting the diagnosis for him so he can settle into secondary school knowing that everyone knows his needs and understanding what will need to help him. And then the seven year old was diagnosed back in June, 2024. So that was only like last year, but we had been on the waiting list for 16 months to get the diagnosis but I knew from you know I knew from when he was about three and a half four that something wasn’t quite right and I think that you know a COVID was actually really difficult for us because I thought that the why he had an issue with transitions was because of COVID, because he was with me the whole time. So I just thought that, you know, his difficulty with perhaps the language and speech and language and I used to say that if he could crawl back inside me, he would. So he couldn’t leave my side. And I just thought that was COVID, because we were all just together all the time. But when we came out of that, we started art therapy with him. And actually, that helped bring his words.

But it still didn’t help with the transitions of going to nursery or going to his childminder and he just couldn’t handle it. you know, when he but when he we found that when we were talking to the nursery, when he moved from his childminder to a nursery, that just by chance he went to the breakfast group in the morning and that was a very small group of people, group of kids, and they would be met by the first, they would be met by the same woman every morning. So we found that actually when we put him in early, met by the same person with a small group of kids, then he was brought into the larger setting. That actually helped him. And then when he started school,

He was so much better because it was the same person, the same teacher. It was a school uniform. It was the same routine. So things actually had got a lot better in terms of a transition because everything was kind of the same. But when anything changed at school, if there was any kind of slight change of the teacher, he would have huge meltdowns after school and refused to walk and I’d have to carry him, the scooter, and my other child home. So I knew it wasn’t, thinking that wasn’t quite right. So I sort of spied on him. I was going past the playground and I was like, oh, looking at all the kids playing in the playground and just to see if I could see him. And I saw that he was walking in a rectangle around the playground and he was looking down at his hands and I could see he was sort of shouting and then his friends would come over look at his hands and then they’d run off and then he’d carry on walking in this rectangle and then the bell went he never spoke to any teacher he lined up and then he went in and I was like doesn’t seem I was was there like a little insect that he had in his hand or what was that? And then when I picked him up from school, he had badly cut his hands. Like he had really bad cuts on his hands. So he had fallen over. And I just thought, okay, this isn’t… So I spoke to the school and I knew from then that looking at all my research that I had to do online because he’s fine in school, you know, that he was definitely autistic. Like I definitely knew he was autistic. It wasn’t an ADHD thing because he had real moments of still. And if you’ve met one autistic person, you’ve met one autistic person, he, ⁓ the typical traits of an autistic person actually just rang more true to him than anything like ADHD, which I think people tend to sort of say if he was really hyperactive or whatever, but he had real moments of still, would draw a lot and was very concentrated on activity. So I was like, this is where I wanna, this is now where I wanna start the process. I want to be referred to have an autistic diagnosis. He was four.

Alis (06:56)

days we’ll see at that point. Right.

Christine (07:01)

He’s a May baby, ⁓ end of May. So yeah, he was in school quite early, you know what mean? you know, he’s quite young, four years old. And yeah, I requested then to see the SENCO and basically sort of fought my way to get the process for diagnosis.

Alis (07:25)

Can I just pause you there? Because it’s interesting that you say you fought your way to get the diagnosis. I want to go back to something you said. ⁓ In school, he was fine. What did you mean by that?

Christine (07:36)

Well, the example that I was given by somebody who is great, but what she’ll do is she’ll check on all the reception kids and make sure that they’re all okay. And she’s a parent support person.

And I felt like it was very much ⁓ talking to me like I was quite a nervous parent or quite an anxious parent and almost slightly dismissing my concerns by saying, well, the fire alarm went off and he was fine. He lined up fine with the fire alarm.

I was thinking, that’s okay. That is strange because another moment where I thought things weren’t quite right was when our battery was going in the fire alarm at home and it would just go, did every now and again. And that sent him mad. Like he couldn’t handle that. And even though his friends were over for a play date, they didn’t acknowledge it at all. He was sat on the cushion, like on a cushion over his head, you know, and he couldn’t play with his friends. So I was like, okay, that’s, so if a big fire alarm goes off at school, I thought that would provoke a reaction. But you know, she was very much like ‘he dealt with the fire alarm fine and I’ve seen him in class and actually he seems to be getting on with everything fine’ but I still knew because when I was dropping him off I could see him in the classroom and he was roaring like the other kids, he’d be growling of said, stay away, stay away because it’s such a huge transition from leaving me to going into the classroom. And even though he was fine, like, you know, doing that, it was still very difficult for him to do. And so he was then growling and stuff. And I remember he got told off for eye rolling from his teacher. He came back and was like, told me that he wasn’t allowed to eye roll. And I was like, ‘that’s okay, you’re not being rude’. So there was a lot of him just being four. And even when we did the diagnosis to form, the forms are so, yeah, we’ll probably go into that in more detail. But like, even when I was doing that with the Senko, there were like questions that you just go, well, he’s four.

Alis (10:14)

Yeah, let’s go into it now. It makes sense. So tell me, you recognized as a parent that there were things that you needed to find answers to and you did the research and you got to that point where you actually felt, I think my son’s autistic. I need to get a diagnosis. First of all, why the need for a diagnosis? What do you think that would bring?

Christine (10:35)

The need for the diagnosis was really for him, you know, and for others, like for the rest of the world. It’s very much like, you know, he’s not a badly behaved child and I’m not a bad mum, you know, because that’s kind of how you feel when you’re out and about and you feel very judged. And I think that I just wanted him to grow up not thinking that there was anything wrong with him. You know, he’s just different. And that’s why I got the diagnosis because it was very much like that gives you power to understand how your brain works and why wouldn’t you get a diagnosis because of that? And I think that for us, there was a lot of people going, well, he is four and maybe he’ll grow out of it and, you wait until he’s five, you wait until he’s seven, you wait until, and it’s like.

What am I waiting for? Like I understand what’s happening with my child, but because of the outside influence of people thinking, we’ve seen lots of children and lots of children act in this way, you kind of get a bit muddled in your head. Like even though I knew exactly that he was autistic and I knew he had a profile of PDA, like I knew this long before people really had kind of spoken about PDA, it’s because it’s relatively new.

I did it, but you still have that doubt because people are going, and you just think, I don’t want that doubt anymore, actually, because I don’t know how that’s muddying how I approach my child and my tactics for dealing with certain situations. So I needed that diagnosis for him and for everyone else for acceptance, which is ridiculous. You shouldn’t have to do that for anyone else. You should be doing it for yourself. But I’m being honest in regards to the fact that, as he’s one day being really hard, pushing into a queue in the park and like shouting at me when I’m trying to say, ⁓ Wyatt, we don’t push in. The performative parenting that you do as of an autistic child, you kind of go but you don’t really wanna say anything, and then the other parents in the park are looking at you like, how are you letting your child get away with pushing in and being like this? The easiest thing to do is to go, he’s autistic. And as soon as you do that, every parent goes, ⁓ okay, sorry. And that’s sort of that judgment goes. So yeah, that’s why I was like, you need to get this diagnosis to make our lives easier.

Alis (13:18)

What was the process? you started talking about this form, tell us about that.

Christine (13:23)

Yeah, so the process is like you have to go to your school’s Senco, like at that age. ⁓ That’s my experience. you know, he had to go, we had to go through the Senco in order to be able to have access to this form. Now, I don’t know if you can do that separate from the school, but we were always guided through the school. ⁓ And we start with the Senco.

And there’s this really long form that is very much like, can your child move from one topic to another? How does your child, I think it was something about colors as well or something. And it was very, my husband and I were very much looking at each other and some of the questions like, well, like I said before, he’s four. So he could, he does do this and sometimes he doesn’t do this. So it was an interesting form that we actually, in hindsight now with our eldest, when we were going through the form, we were very much like, well, that’s like him. Actually that’s more like him than it is my youngest. So that is quite interesting looking back on it. But with PDA, I think it’s, there’s a lot of ADHD traits with it. There’s a lot of activities. can be really, so they can be really, I don’t know, really four-year-old-like. ⁓ And so you do get a bit confused to answering the questions when they are that small. ⁓ So yeah, we found that quite hard and also, we were doubting ourselves sometimes going through it, going through this form. But when we spoke about how he would run ⁓ to the road, if anything, like he had dropped his biscuits by accident ⁓ and he couldn’t take that. And so he went to run into the road and you’re having to carry them, so that was really when that kind of spiked the Sendco’s interest, it was very much like, oh okay, so no sense of danger, no sense of like sort of the control and she was like, okay, you know, and it kind of, I don’t know, it felt like you had to kind of get to the extremes before kind of people sort of was taking a bit of notice. So yeah, so we went through this form and it was, you know, it’s quite a, it’s also quite, quite traumatic, of reliving everything that you have to go through. You have to always go through the worst parts to kind of get to these things. So you come away from that going, you know, you’re quite sort of like drained from it. And then that was it. You’re kind of sort of leaving it in their hands to see what happens next.

Alis (16:37)

And when you got the diagnosis, it came with the PDA profile, which you’d imagined it would. Can you tell us the difference? What does that mean? So how did it show up in your son having a slightly different profile?

Christine (16:54)

Well, PDA, Pathological Demand Avoidance, for those who don’t know. But I actually prefer persistent drive for autonomy because ‘pathological’ just makes you sound, you know. But he, it was the refusal, the point blank refusal to do everyday tasks and the really heightened levels of anxiety that happens from that. So, you know, when you, it’s very defiant, you know, it’s very, you know, they won’t put their shoes, they can’t put their shoes on one day, or they can’t actually physically walk. They’re frozen. They just struggle with some kind of everyday activities. And that can change, like, every day.

So you can have one day where they actually are quite happy to do certain things and then there’ll be another day where they point blank refuse. So it’s a real roller coaster. So when you’re looking at typical traits of autism and any kind of neurodiversity, you’re kind of trying to put together like a, it’s like a jigsaw trying to piecemeal all these things. Well, he has a bit of this and he has a bit of that, but actually, the profile that people that I had looked at for PDA just really hit the nail on the head. Very much like really empathetic, emotional, loves being with people and friends but struggles so hard with it because of the loss of control with games, especially being a child.

It just took everything up a level. So it’s not like a child doesn’t like not to win. All children love to win. But it was like, upper notch. Sometimes a child doesn’t want to put their shoes on, fair enough. But again, it was just totally just upper few notches. So it wasn’t like when people would say, but that’s like what all children do. It’s like, no, it’s actually an increased level of defiance and you can see that they’re angry but upset. It’s not just like, like I really think that there’s a big difference between a tantrum and a meltdown. know, a tantrum is, know, what a neurotypical child would do to feel pure defiance and I’m not doing it. Whereas a meltdown is actually him, you know, sort of shutting down and he cannot cope with any of things that are happening around him. And that is real, that comes from a place of survival, him thinking he has to survive in this place where he has no control of. So I think there’s a real kind of, it’s more extreme, I guess you could say.

Alis (20:05)

This type of behavior starts showing in school as well because before you said school could not see it, it was more at home.

Christine (20:13)

It was really at home and it was actually, it would come out of like the school gates, like, ⁓ you know, at the beginning of school. I think he really kept it to try to keep it together so much for school. But it really, you know, like I said before, like if there was a change to an after school club or something that I wasn’t aware of ⁓ and he then couldn’t walk home, so there’s a paralysis where they actually just cannot physically move. And you you again, when you’re not aware of what’s happening, you’re like, come on, and you start walking down the road and your child is still standing there and plenty of parents have seen it where the child is sort of shouting and crying, refusing to move, and you’re like, well, I’m walking up, and you know, you don’t know what’s happening. He thinks he’s going to die. That’s how the extreme is for a PDA. Any kind of change is like a gun to their head. They really think this is risking my life, a change. So it’s not just like, oh, come on, let’s get on with it. It’s actually calming the nervous system to be able to react differently to it.

And so, you know, I would then have to physically pick him up and my older child would be like, okay, mommy, I’ll take the bags, you know, and you carry him or I’ll take the scooter, you take the bags. So I’d be taking the bags on my front, him on my back and then my son with the two scooters.

Alis (22:00)

And so there is that switch of the nervous system. He’s literally gone into a fight-off life.

Christine (22:05)

Fight or flight, Yeah, flight, fight or freeze. Yeah, that’s exactly it. And he can do all of them at any given moment. you start to, you learn a lot. There’s lots of people that I ⁓ found online. But you keep the demands low. And then as soon as we started keeping all the demands low, we started seeing a change.

Alis (22:32)

Can you clarify what you mean by demands? Because as soon as you say demands, I’m imagining, you must do this. But you’re actually just talking about the expected, the normal, looking to the car or heading home.

Christine (22:44)

Yeah, even that. It’s ⁓ a demand for a PDA child is, ⁓ hello, how you doing? Right. That’s a demand. So there are times where they cannot, you know, they cannot speak. And there’s one person that I follow who’s amazing, this ⁓ Casey, ⁓ she’s incredible ⁓ on Instagram. And she always says, try one thing for me.

Don’t speak. When you pick up your child or when you walk into a room, don’t speak. Don’t speak to your child and see what happens. Yeah, it’s incredible. It’s like, you know, it’s so hard. goes against, I think with PDA, it goes against everything in your being. Because how are you? Like, how are you? You okay?

Alis (23:23)

And have you tried that?

Christine (23:42)

We’ve learned to show love and to show care by asking those. It’s a natural thing to do. So you’ve got to go against your natural.

Alis (23:48)

So when you’ve tried, what has the impact been when you’ve?

Christine (23:51)

Well, he’ll come with information and we’ll talk like, when we go to school, he cannot physically walk sometimes to get him to school, and I’ll talk about the paralysis. And so he goes on the back of my bike and I knew that there was gonna be a bit of a change, not a change, but there was a school trip or something that was happening.

I think it was the year, that was it, the year six SATs. And so there’s a real change in the playground. And so that was really a real change for him because his support worker was working across the two years. And I didn’t say anything. I’ll put him on the back of my bike and I didn’t say anything. And I really, you know, it’s silent cycling. And all I wanna do is go, ‘you’re all right, bud, you’re okay’ and she didn’t say anything at all. And he just came out with, ⁓ know, ⁓ a fact about the support worker and how he felt about that support worker, about that day that that was gonna happen, what was gonna happen and how he was gonna sort of deal with it. It was very much like, I know that this is happening, but that’s okay because I know I’ve got this. And I was just like, yeah. So it’s really, and you just go, right, you gotta hold on to these little nuggets of like little, and you just go, God, it does work. like lowering demands, approaching things with humor, not speaking, it all really works.

Alis (25:34)

So masses to learn as a parent and masses to change because all of your sort of unconscious learning how to be a parent would have been from your parents and from the society around us and you’re having to unlearn in a way. How has that looked with the school? Because I’m imagining it’s exactly the same in school that we’ve, as an educator myself, we’ve got these ideas, this is what it looks like, the children come in, they’re just gonna sit down, they’re gonna get their pens out.

This is what my morning’s gonna be. I’ve set it all up and all of a sudden it’s not working with one child. What would you hope educators do to get, suppose, to where you are with that understanding of how to make it work for that one child?

Christine (26:22)

Being a teacher is really difficult. I think teachers are incredible and I think that most schools, all the funding’s been cut, under-resourced, underpaid, and it’s really hard looking after 30 kids in a class and having this one child, ⁓ it’s never one child, just to say, but one child in particular, going against the norm, who can’t sit on the carpet, who can’t  answer to the demands of the school day. And I think that, you know, one thing that I said, you know, with the school is, you know, he’s not going to be the first and he’s not the first and he’s certainly not going to be the last PDO child that comes into this school. And the more you learn,the more you learn about this diagnosis, the more that you really ⁓ appreciate the different ⁓ abilities that children have  coming into the school, the better informed you are, the better you’re able to teach, and the better that they’ll be able to learn. I get it, I understand. I’ve had to unlearn what we’ve just said, everything about what I thought a parent should be and especially thinking I was parenting a neurotypical child for however many years before, four years before, you know, my youngest, you know, came about. So I understand, like I totally get it. It’s very difficult. Without that learning, without educating yourself on different, you know, additional needs that children have.

you’re losing out, like you’re making your job harder. And actually, it doesn’t take a lot to just kind of come away and listen to a podcast or follow a few people on Instagram or, I even bought the book, Educators’ Guide to Pathological Demand Avoidance. I’ve supplied PDFs on, shortened PDFs, as soon as he got the diagnosis to the school and I asked the school to just email that out to everyone, like everyone in the school because it’s not just about the person, the teacher in the class, it’s about the lunchtime staff. It’s about… after school staff. It’s about the staff that see them in the corridor. You know, it’s about the TAs. It’s everyone because the more we talk about it, the more we learn, the easier everyone’s lives are. And it’s not just simply for the child, which for me is my main focus, but it’s for the teacher.

It’s for the other children around. It’s for the parents at home. It’s for the siblings. It’s the more we educate ourselves, the better it will be. And so that’s where I’m like, I come into school every year and I say the same thing every year to the new teacher you know, this is what his diagnosis is. This is how he behaves. This is what we’ve got to look out for. This is what you’ve got to do. And you must communicate with me. You must tell me if there’s any change to the schedule, to the teachers, within reason, obviously. Anyone’s off sick, please call me in the morning, you know, so I can make sure that I’m preparing him and myself for what might happen because of this change, because it’s not just getting used to a change. He actually thinks he’s going to die. That’s what I mean. I’m going on about the severity of it because you and I can’t understand that, you know what I mean? Because we don’t have that, but that’s how it is for him. So the more that we communicate and the more that we listen and you know, I think that’s what I want from teachers, that’s what I want from the education setting. It’s not about saying he’s fine, ⁓ it’s about actually listening to the parent because they know the child.

Alis (30:48)

So what I’m taking from that is there’s a combination of learning more, so getting the information and there’s lots of information that is easily accessible, like you explained, but also seeing that child and family as an individual. it’s not like what you said earlier, if you’ve met one person with autism, you’ve met one person with autism. isn’t there’s a checklist and this is what they’re all going to behave like. It’s getting to know the family, getting to know the child and understanding what works best in that particular scenario and then understanding that that also is going to change. What your child looked like in year four is not going to be the same as in year six because there is that developmental growth.

Christine (31:29)

But also even day to day. Like with PDA, it’s like, know, one day he could sit fine and be, you know, joining in and the next day he can’t. So it’s being adaptable. It’s actually seeing it for the bigger picture in terms of like…

This is a child of PDA, we know things change. So what can we do that is a consistent strategy? That is his consistency, like what can we keep consistent for him in order for him to feel safe first and foremost? Where does it, so let’s not change, let’s give him, so he has a busy box and he’ll have different toys, fidget toys, coloring in, pencils, things like that, in the busy box. He’ll be going into year three. So he was in year two. And that busy box will come with him to his new classroom. It will be the same busy box.

Alis (32:19)

Can we clarify what year he’s in now? He’ll be going…

and that busy box will come with him.

And will it change? So

same things in there. ⁓

Christine (32:38)

He’s in there, yeah, and we can bring things from home and he can keep it in his busy box, ⁓ you know, to kind of keep that consistent. He can also access that busy box whenever he wants. So if he can’t, ⁓ you know, be on the carpet, you know, he can go and sit at a table with his busy box and listen in with what’s happening with the teaching and colour and then you’ll actually find that he starts then joining in because there’s no pressure on him.

Alis (33:15)

What if he just doesn’t want to sit on the carpet and wants to be with the busy box? That actually he could sit on the carpet. If he chose to.

Christine (33:26)

Yeah, he could sit on the carpet if he wanted to.

Alis (33:29)

What I’m asking is, and I’m saying it, I’m sort of playing devil’s advocate because I remember this when I was in education, was educators saying it, but he could sit on the carpet. But he’s choosing the busy box because maths is hard this morning.

Christine (33:36)

Was. right,Yeah, that is really, it’s that whole thing of like when I was being dropped at nursery and clinging onto me and I’d be going away in tears and I knew it wasn’t right and then they would go, ⁓ he’s fine 10 minutes after, he’s just acting up for you. And you know, it’s that whole like, he could sit on the carpet, he’s just avoiding the maths. know, why does everyone have to be having an ulterior motive

Like, why can’t you, like, you speak to, would you, I don’t know, would you speak to another adult like that? Do you know what I mean? It’s a bit sort of like, can we just have a little bit more respect for the child as a person? Because actually, maybe he’s not being manipulative. You know, and actually that part of the brain doesn’t evolve, you know, up until you’re 20. So like, you know, they’re not actually being that way. It’s just the final difficult.

Alis (34:40)

An adult lens looking at the scenario I’m thinking.

Christine (34:43)

Yeah.

And it’s projecting, right? So you could project like what your feelings are onto this other person. People do it all the time.

Alis (34:54)

And I think what’s interesting is you saying that he’ll be using his busy box, but slowly he’ll be joining in because he has been listening all the time. Yeah. And then the learning’s happening, which is the whole point.

Christine (35:06)

The whole point and also because he’s learning on his terms. What he is perceiving is his terms.

Alis (35:12)

I think that one of the difficult things in education is that it’s this shift from it should be on the teacher’s terms, which is part of the training, and certainly was part of the training, was you need to manage behavior. You need to plan your lesson. You need to have all the resources that are there allowed out. You need to sort this lesson out on your terms. And what we’re saying now, and what adaptive teaching is saying now, is actually it should be on the children’s terms. And if we get it on the children’s terms, then more learning is gonna happen because they’re going to be in the space in their mind to learn. It isn’t something that they’re battling against, but you’re working out what their terms are? If I do this, it’s going to mean that they’re more open to and proactive to their own learning.

Christine (36:03)

Mm.

Yeah, absolutely. I think that, you know, I think it’s just, you know, when I think my child is a classic, you know, low care needs, right? So people will always deem, you know, the hidden disabilities where they’re functioning, you know, they’re chatty, you know, he makes eye contact. He’s, you know, it’s like he has friends, you know, that kind of yes, you know, that doesn’t mean

that he doesn’t struggle. it doesn’t, you I think one teacher, which was really disappointing when I had a meeting, told a man and said, well, what I’m hearing is separation anxiety. And I was like, it’s not separation anxiety. Well, it could be from the fact that he is autistic with PDA. So this isn’t just a case of, oh, he’d quite like to be with mum. You know, he’s physically, unable to get to school. And so, yeah, think there’s just a real, that’s where it’s just, there’s a real understanding of people and unlearning. ⁓ And I think that is hard for teachers. They’ve got so many kids. Like, don’t, you know, but, you know, one of the things that they also said was, we cannot possibly, ⁓ we cannot possibly, make every teacher in the school understand every single child’s diagnosis. It’s not possible that every teacher in the school will know every child in the school’s diagnosis. And I just thought, no, I get that. There’s a lot of children. But you should know. You should know what every child needs, right? That should be a you know, why can’t you send an email to all staff to say, look guys, this one’s having a ⁓ bit of an issue in ⁓ year two. one, you know, no one approaches them if you feel like it has to be someone from year two to approach them or please call the support worker. You know, it’s a bit of a like, you know, just a heads up. You know, and I just, yeah, I think that is, I think that actually needs to change.

Alis (38:31)

To the rights of the child, doesn’t it? If you think about the list of the rights of the child, then actually, yes, we should all be making sure that those child’s needs are met. That’s our role. ⁓ Tell us a bit about the EHCP, because I know you’ve just gone through that process and you’re waiting to see if you get an EHCP for your child. Can you just tell us a bit about what led you to do an EHCP and what the process has been like?

Christine (38:37)

Yeah. I think what led us to actually just even doing an application is simply the fact that he wasn’t getting the one-to-one care that he needed. We kind of went through reception, towards the end of reception, people finally taking notice. But it would only be because the Christmas show, he wouldn’t participate, he couldn’t do the drawing. And it was only then when things, this is kind of what happens. I mean, I always go in to be like, be forewarned before I’m trying to give them information. So these things don’t happen. But it always seems to be that, you know, the longest term is the Christmas term, you know, after October half term horrendous for any parent. And it always kind of goes wrong after October half-term because there’s a change in seating or there’s a change in the classroom. So I’ve had to say the same thing in reception in year one and year two. But in year two, know, everything had to, things then he started to unmask in school. ⁓ In year one, he would hide under the table.

⁓ And then in year two, the teacher was not flexible at all and she did not tell me or give me enough warning that she wasn’t going to be there. And that resulted in school refusal. pretty much all of last year, he pretty much didn’t really go to school. It was really difficult. The only time that he would go to school is if the same person who is just the most incredible person ever, his support worker, his learning support. ⁓

If they were there and they met him, then he could go to school. If he wasn’t there and I wasn’t told, he couldn’t go to school.

So this is why it was the need for the EHCP because actually, you know, they’re saying he doesn’t need one-on-one support. Well, actually, you’re not able as a class teacher to meet his needs and the rest of the class needs, you know, because he’s not able to sit down or…

He needs to have a movement break. And if you’re not giving those things because you’re unable to, because you don’t have the support in the classroom, well then that is having a negative impact on him. And it’s having a negative impact on us because he cannot move or he’s been forced to do something and he’ll have a meltdown. There’s lots of instances where he would have benefited from having that one-on-one support in the classroom.

He benefited in year one with this incredible TA and we were just lucky that she was able to be with him. Year two, that changed. They had one TA across two classrooms with an inflexible teacher. Just wasn’t gonna work. So that’s why I was like, right, well obviously I now need to go and get an EHCP because I know it works. I know when he has that support, it works. He’s calmer. You can manage any changes, any transitions, because that’s

that one-to-one support will be the constant that he needs to help navigate.

Yeah, we went from them saying he doesn’t need an EHCP at the beginning to yes, we do need an EHCP because we are actually putting additional resources to him, which the school don’t have. So we’ve been assigned a caseworker and we’re now waiting for the assessment to take place.

Alis (42:46)

Do you know how long that’s going to take? What’s the sort of time scale?

Christine (42:49)

No idea. I think with anything it’s so long. All of these processes are so long. And then even when it comes back, most of the cases are rejected. actually for those who appeal, 96 % of cases that have appeal win in favor of the parents. So it’s a real kind of the way that EHCPs have been managed over the years is just, I find, wasteful ⁓ because, you know, why does it have to be that people have to appeal? You know, it’s time, money, ⁓ just to get that additional resource in school to help support the child. I think it’s just a real waste of time and money and it’s been really mismanaged.

Alis (43:42)

There’s a big review at the moment going on, so hopefully that will be better on both sides from the bureaucracy point of view so the child gets what they need.

Christine (43:53)

Yeah, exactly.

Alis (43:55)

Can you tell us just to finish a little bit about transition? So he’s heading into year three. What have you done to make that, especially from this year where there’s been a lot of school refusal to trying to set up next year in the most positive light? What has that transition looked like?

Christine (44:14)

Well, we’ve had lots of meetings with the school and there’s been a lot of learning throughout this year from them, you know, and they’ve understood that what he needs and so for September, you know, I’ve had to go in several times and I’ve said, I don’t want another year like we’ve just had. ⁓ And from September, his brother won’t be in the school. So that’s gonna be hard, you know, because that’s a change, that’s a huge change. There’s not the reassurance of his brother being there. ⁓ There’s also, you know, just a normal change. Like any neurotypical child would have, you know, going to a new classroom, new teacher, but they have specifically chosen a really empathetic and really understanding of additional needs teacher and they have brought back the TA that he had in year one to make sure that he would have that support there whilst we’re waiting for the EHCP to be able to make sure that she is the TA for that classroom. So they’ve done the social stories, they’ve chosen the right teachers.

Alis (45:23)

Can you tell us what you mean by social store?

Christine (45:24)

Yeah, so a social story is basically a set of images and a story that says that the school will provide to your child to say, you know, here are your new teachers for year three and then there’s a picture of the TA and the teacher, there’s a picture of the classroom, there’s a picture of the door to get into the classroom, there’s a picture of the pathway from the school gate to get to the classroom, you know, where you would hang up your coat, where you would go to the toilet, where you can access the reading corner and things like that. it’s a social story, it’s pretty much like a visual representation of what’s to come. So we have to do that a lot with any kind of going out journeys. Like this is, if here is a picture of where we are going, and then here are all the things, here’s different visuals of what we will pass on our way to get there, how long we’ll be there, and then how we will get back that place and it’s pretty much that’s what they do for the school which is great.

Alis (46:29)

That’s all been put in place. So you’re showing him this throughout the summer.

Christine (46:33)

I don’t show it to him throughout the summer. No, I’m actually gonna, you know, we can show it at the beginning and then I’ll show it at the end because actually this year has been a really tough one and I need to calm his nervous system right down. And so the idea of sort of showing him something that’s gonna happen in six weeks time ⁓ is just, the children just don’t have a concept of time today. And so with him, it’s just like, let’s just park school, let’s just forget about school for as long as we can, and then we’ll gradually build up to it, know, for the last week, the last couple of weeks to school. So to prepare him, you know, so the school has prepared him as much as we can. They’ve done, they’ve really listened to everything over the years, over the year. The teacher that I met had the book that I bought and she said, you know, summer reading, which I was really thankful for. She held my hand and said, we’ve got this. And that was amazing. And I just think, God, that’s thank you. That’s all I need. know what mean? So the school has done what they can for me. you know, so on that side, they finally listened and I feel positive about what they’ve put in place the HCP, the assessment, I feel like we’re in a good place. So for us at home to prepare him, we have a visual timetable through the holidays that we can sometimes use and sometimes not depending because a visual timetable for a PDA child can also be a demand. So you kind of leave it out and see what happens and sometimes you can put it away. But we’ll build up with it with the visual timetable. It will be very much like, you know, this is the school hours, this is the gaming hours, this is the TV hours, this is bed. And so we’ll start to introduce that. Because bedtime, you know, in the summer, we’re really struggling with bedtime at the moment.

It’s getting later and later. And I think as his anxiety builds, things like that happen. bedtime becomes later. Not being able to leave the house is harder. It becomes more frequent. So it’s just about lowering all the demands. If you don’t, after the year that we had, we actually didn’t leave the house for two weeks because he couldn’t cope with any kind of change.

You know, kind of, you look at everyone else having their holidays and going for their walks and going to the park and things like that, and you’re just like, okay. But actually, there was an amazing therapist called Dr. Naomi Fisher, and she was very much, she just posted a video saying, look after the child you have now.

And it won’t always be like this. He won’t always not be able to access the park and stuff like that, which I know because it’s fluctuated throughout the years. But ⁓ it really reassured me that it was a case of just like, look after the child you have now. And the child I have now cannot leave the house because it’s a bit too much. I need to calm his nervous system to get it right back down after the school that we’ve had, the school term, the school year that we’ve had and then he’ll be able to access everything. And actually after we did that, he had the most amazing play date and was kind of sort of back to himself again and like being, yeah, really was happy but then we stayed in the day after and then we can go out and we stay in. And that’s how we do it. We just basically lower all the demands in terms of, I know it goes against all parenting but if he tears me to get him something because he’s hungry, I will deliver that food and I will put it down, I won’t speak and I’ll go away. And I will deliver things and I will give it to him. when I say lower demands, it means you do feel like, God, you might feel like you’re going a bit mad. But actually really beneficial to be able to just sort of deliver the things, make them feel calm, they’re not having to access anything and then the you know his nervous system calms and then I can talk to him and you know we’re in a good place and I think that’s we are going away next week but when we come back it’s the last week before school and I know it’ll be a case of us staying in every day.

Alis (51:17)

You really do approach this in a completely holistic way. You’re looking at every aspect of your child, is so important.

Christine (51:25)

And one thing that’s really important with a PDA child is a declarative language. So what I mean by that is it’s approaching your child with what are you going to give your child instead of what are you wanting to get from your child. So it’s a case of going, wonder if we could, you know, I wonder if we could turn the TV down a little bit, just hurt my ears a little bit, ⁓ you know, look, there’s a packet of crisps on the floor and then counting to 30 in your head and nine times out of ten they’ll look and they’ll pick the packet of crisps up and they’ll put it on the table. You know it’s about like just sort of making statements you know imagine if you know we did this or I wonder if or you know it’s not it’s not having any kind of put your shoes on you know it’s not I’m not demanding anything of him.

I’m giving him information, I’m making statements, and that is where he is like, right, okay. And then it’s much more ⁓ easy to communicate with when he feels like we’re on a level. And that’s the one thing I had to say to the teacher.

They have an issue with authority. So if you come as an authority figure in your tone, in how you look, in what you’re saying, he will instantly think there’s a threat to himself and he will not react in a good way. So lower yourself, be a friend. Don’t, have choices, obviously close choices, there’s boundaries, we have to have boundaries, but.

Pick your battles. Don’t force things because you think you should because you’re a teacher or a parent. Really be their friend. Approach things with humor. Humor is your lifesaver, even though you might not feel like it. Go away for a few minutes and then bring the humor because that is your friend. That will help you. You can approach things with humor, declarative language, lowering demands.

You’ve really got a lovely space for you to be able to communicate better. And it’s really hard. But it works. So it’s about calming your nervous system before you can then try and calm theirs.

Alis (53:48)

Hard. You’ve given us lots and lots of takeaways. So thank you for that. And good luck with the new year that’s just about to start, the new term and the new academic year. And it looks like you’ve got so many different things in place and you’re ready to keep working together with the school.

Christine (54:19)

Hmm.

Alis (54:20)

To sum up, what would you hope a key takeaway for a parent or carer watching this or listening to this would be? would you have they take away from your conversation today?

Christine (54:32)

⁓ I think it’s just, I think that it’s okay, you’re not on your own. It’s actually, you know, there’s lots of parents out there that are feeling the same way. ⁓ And just to really…

Look for the information. There is lots of help out there. You don’t get it from the diagnosis. When we got the diagnosis, we got handed a load of paper and loads of training that I had already done. Because you’re waiting for 16 months, you’re going to do the stuff because you need help before that. There’s no magic help that you get.

So have a look at these key people online that can really help you. And really, that your feelings are valid, that you’re not going mad. You know your child. If you feel like there’s something just different and you want to get help with, go with your gut. Trust yourself. You know your child more than anyone. just trust yourself, go with it. Learn, speak to people and try not to get in your head about it too much and think that you’re on your own because actually there’s loads of us out there.

Alis (55:49)

Thank you so much. Thank you for your time. It’s been amazing.

Christine (55:52)

Thank you. Thank you so much for having me.