#61 - Rachel's Lived Experience: What School Flexibility Looks Like for a PDA Child

Rachel, a parent from southern Tasmania, joins host Leisa Reichelt to share her lived experience supporting her son, now in Year 11 and engaged with school, through what has been anything but a straightforward journey.

Rachel's son is autistic with PDA (Pathological Demand Avoidance, or Pervasive Demand for Autonomy), ADHD, dyslexia, dysgraphia and a high IQ. That combination created enormous challenges in settings that weren't designed to accommodate his needs. But also enormous possibilities when the right supports were finally in place.

Rachel walks us through the early warning signs from daycare onwards, a primary school experience marked by suspensions, bullying and the gradual removal of the very accommodations that were keeping her son engaged/ Then the 19-month battle to get him into a school better suited to his needs, which was ultimately resolved in eight days once an advocate got involved.

She shares the specific, practical accommodations that have made the difference: running when overwhelmed, frozen peas and corn for sensory regulation, a safe space during substitute teacher lessons, dropping subjects that created knock-on dysregulation, and a highly modified timetable built around his strengths. She also talks about the role of a positive behaviour support practitioner in shifting the whole school culture, and why that kind of whole-school investment pays off for every student.

Rachel also shares her perspective on what's at stake with the proposed NDIS reforms, and points to resources for families who want to stay informed and take action.

Relevant resources:

• The Growing Space (NDIS information and advocacy) - https://www.thegrowingspace.com.au/
• Disabled People Against Cuts (DPAC) - https://www.dpacaustralia.net/
• Australian Neurodivergent Parents Association (ANPA) - https://www.thisisanpa.org/
• Regional Autistic Engagement Network Tasmania - https://www.raentasmania.com.au/
• Association for Children with Disability (national, state branches) - https://acd.org.au/

Transcript

Leisa Reichelt 0:05

Hello, and welcome to the School Can't Experience Podcast. I'm Leisa Reichelt, and this podcast is brought to you by the School Can't Australia community. Caring for a young person who is experiencing School Can't can be a lonely and isolating experience, but you are not alone. Our guest today, Rachel, is here to share her lived experience of supporting her son throughout his School Can't journey. Rachel's son is now in year 11 and doing well at school with the help of flexibility and accommodations offered by his school. But it was not an easy journey to get there. Rachel is gonna share some of the challenges that they faced along the way and also the accommodations that really made a difference for her son Rachel is also actively engaged in trying to communicate to government some of the concerns from our community about changes to the NDIS, and she is sharing some great resources on how we can keep on top of what is actually happening, and how we can get involved as well in helping to shape that conversation. The audio quality on this one is not the absolute best, so my apologies for that. But that aside, I hope you enjoy our conversation. Okay. Well, thank you so much, Rachel, for joining us on our podcast today. It's such a delight to have you here with us

Rachel C-G 1:17

Great to be here. Thank you

Leisa Reichelt 1:19

We are here to hear about your lived experience of School Can't with your youngest son. Before we get into that, can you give us a little bit of a context for you and your family? Where are you? What do we need to know?

Rachel C-G 1:34

So we're in southern Tasmania. We're considered to be remote rural, even though we're 25 minutes from Hobart. We had a very, very difficult ride with School Can't for my daughter. Both of those children of mine, uh, have got PDA very, very strongly, and traditional educational discipline/goal setting/sticker charts and things was absolutely not helping at all.

Leisa Reichelt 1:58

Yeah

Rachel C-G 1:59

So I think with our situation with my son we were able to forge a better path. His current situation in year 11 is he's been engaged in school the entire time, but it has been on a highly modified schedule.

Leisa Reichelt 2:12

Let's go back to the beginning, shall we? Conscious that you had the experience with your daughter as well, which maybe kind of informs things a little bit, but if you think about with your son, the earliest clues that School Can't was gonna be a thing, how far back do you go?

Rachel C-G 2:30

Oh, look, he really struggled in daycare. He was constantly in trouble. So this is going back to when he was two and three years old. He was, uh, absolute tiger very, very high energy, always getting in trouble. By the time we'd pick him up, and it was only a couple days a week, he was absolutely exhausted. He was cranky as hell. Things were thrown. There was enormous meltdowns, sensory overwhelm. The other part of it was that he was also, as it turns out, assessed to be 2+ exceptional. So, as they used to call it or whatever, autistic, specific learning difficulties, so, dyslexia, had some communication issues. But he had this massive full scale IQ of 138 or whatever.

Leisa Reichelt 3:07

So it's like gifted but also neurodivergent and with some particular learning

Rachel C-G 3:14

And a lot of frustration that came from that intersection as well. So, um, there was a kind of push to try and get him to school early because of his intelligence and he'd benefit from being challenged because his behaviors were because he was intellectually gifted and he wasn't being challenged, without recognising that all of that perceived negative behaviors were just his undiagnosed autistic overwhelm and oversensory stimuli.

Leisa Reichelt 3:38

You talked about the behaviors and always getting into trouble at daycare. Can you talk a little bit about what those behaviors were? What, what were you seeing and what was he getting in trouble for?

Rachel C-G 3:47

Not listening, being stubborn, being angry when... And it was, again, it was framed like, oh, he's having a tantrum because he's not getting his way. But it, as we know now, it wasn't that at all. And it was kind of one of those things where some of the staff thought it was cute and funny, and some of them thought it was a big pain in the ass because it was so much extra work for them.

Leisa Reichelt 4:05

you see similar behaviors to what was happening at daycare? Was it same at home or not?

Rachel C-G 4:09

Oh, yeah, yeah, yeah, climbing on everything. So he'd get up at 2:00 or 3:00 in the morning. He worked his way through child gates, and he'd just climb over them. He was incredibly nimble. So I got incredibly frustrated 'cause he was coming in, and he was turning the TV on at 2:00 or 3:00 o'clock in the morning. I had lost my shit completely, excuse the language. Lost it with him completely and said, "Right, that's it. I'm done." And I pulled... so we have a TV, we've got a CD player attached to it still, we've got DVD player attached to it still, and a sound system. I went in and ripped out every single cable. And I thought, right, look, my husband works away at sea in the merchant navy, so he's away large chunks of time. Okay, we're just not gonna be able to watch any TV for the next five weeks until he comes home, 'cause I do not know how to put any of those cables back in. Right, I'm just done That's it. And by 8:00 the next morning, he'd got behind the TV and he'd pulled all the things out, and he'd replugged everything exactly where it needed to go.

Leisa Reichelt 4:57

Well,

Rachel C-G 4:58

But again, in the school setting, that sort of ingenuity, tied with mischievous, stubborn, willful behavior is not celebrated in any way. only by a couple of teachers who thought it was absolutely amazing, but the frustration happened very quickly. And the other thing that made him socially unacceptable and this bled through to his, Launch into Learning, is what it was called. So it was like the pre-kinder thing where you go for one or two days a week, as just kind of like getting them used to it. He loves touching hair. And of course, it's not particularly socially acceptable to go around sort of petting people's hair constantly, and it was a real stim for him. I remember one instance where, he wouldn't sit still, he wouldn't listen. So like we'd be there, and all the kids are sitting on that with their mums, you know, and he'd be just tearing around the entire library. The principal at the time clocked him quite quickly, and she got him to sit next to her on the sofa, and she'd literally wedge him in. So he had that physical squashing on him, which he actually really loves she would just have him squashed against her while he would be reading the book with her. And she had this quite elaborately coiffured hair up in this elaborate bun. And it was like, you know, seeing teenagers in a theater where they're kind of sneakily trying to put their arm around their girlfriend. He was doing that, but it was to get his hand in her hair, and by the end of each session, she'd look like she'd been dragged through a hedge backwards. But she would just sit there with him, and he would just pull this hair apart, and she'd just let him go because at least he was sitting and engaging and listening at that time. But that behavior, of course, one, that's cute again in the pre-kinder, kinder setting. But when you're still a couple of years down the track and that sort of is happening. He was suspended multiple times for multiple number of things, mostly his absolute need for people to be correct and not to tell mistruths or negotiate when you're not gonna follow through with the negotiation. Used to make him incredibly angry and incredibly upset. And we know in the school setting there is a lot of that The forced eye contact, the sitting on the mat with all the other kids was absolutely could not do it. And this one teacher was amazing because within the first couple of days, she's like, "Okay, this is not working." So he didn't have to sit on the mat. He didn't have to look at her. He didn't have to look at the board. And what she would do is just say, you know, "You got your listening ears?" And he'd just put a thumbs up and keep doing like fidget, building things with his Lego or with those magnetic blocks that he absolutely loves. So he'd be sitting off, five feet away from the other kids, not looking at the board, not paying attention, off in his own world. And he was able to repeat back to her everything that she had said and demonstrate that he understood the concepts. So she was happy that he was absorbing all of the information without her needing to force the eye contact or for-force that sort of thing. That meant that he was learning comfortably in his own way without the pressure of having to be close to people and having them near him and he could use that, you know, focus of looking away and using his hands and still get everything he needed to do from the education system.

Leisa Reichelt 7:44

And what age was this teacher in his life?

Rachel C-G 7:48

So that would have been grade one, grade two, around about there. So still fairly early on.

Leisa Reichelt 7:55

we had a pretty good grade one and two maybe with this understanding teacher.

Rachel C-G 8:01

Yeah. And then obviously other teachers are different, and then the following few teachers were much more disciplinary and much more, "You better look at me." and they'd say things, "Oh, if you cooperate and do this now, by the end of the day, you can have a half an hour with your magnetic blocks," and then he'd run out of time. So no, there's no time for magnetic blocks. Absolutely, they'd broken the contract, and that happened repeatedly. And there was, like, the early teacher as well, one of the things that she'd done was that they had an agreement with the staff at the office and, principal that he had a running rule where if he was starting to become overwhelmed and to the point where he was probably gonna lash out or throw a chair or whatever, he was allowed to run. Previously, he'd been abscond to run, like run out of school and gone. And so this was a contract that he had, was that he, he was allowed to run, but he had to run around the school block. And as long as she could see him going past the window every few seconds, she knew he was following the rules. So he would just run and run and run until he'd run it out and then come back in. No punishment, no punitive language. The other thing that helped as well, we found out that he had very strong oral sensory fixations, so ice cubes and carrots, and frozen peas and frozen corn. So this school, and this carried through to his later school as well, allowed us to bring in every couple of weeks a bag of frozen peas and a bag of frozen corn. It would live in the office, and when he would started to really lose it, they'd send him to the office, and one of the office ladies would give him a big bowl of peas and corn, and he'd actually sit under her desk and just eat that bowl. Tucked away, the office staff couldn't see him, parents coming and going couldn't see him. He was just wedged in there doing his regulating thing, and then when he was ready, he'd say, "Yeah, I'm okay to go back into class."

Leisa Reichelt 9:40

Amazing

Rachel C-G 9:40

There, there was resistance from older, like, later classes where again, and there's this expectation as they get older, those behaviors are supposed to drop off, and therefore he was expected to, to kind of fit in more. And yet those things, those supports, those accommodation were what was keeping him in class and engaged. So these teachers, later teachers as in further on, were kind of getting more punitive and getting more authoritarian and saying, "No, you can't go to the office for your peas and corn. Don't be stupid." And he wasn't allowed to run around anymore. And all of those structures and framework, 'cause of course he'd been doing so well, they just-- he doesn't need them anymore.

Leisa Reichelt 10:15

We've all heard that, haven't we? What a shocker. But It is such a demonstration of how accommodations can make such a massive difference. It's a shame that so often they are seen as a temporary measure rather than, you know, an ongoing tool. At this point in your son's life, how much was known about him in terms of, did we know he has ADHD, autistic, PDA? Like, how much of the picture was clear at that point?

Rachel C-G 10:41

I think he was about five, I think, with the ADHD. And again, that was an act of sheer, sheer and utter desperation where I took him to the pediatric- appointment with the pediatrician. and we were so late on his wait list for clothes and things, and somehow he managed to squeeze us in and, and then he ended up taking out half the family in his attempt. My son was doing the thing that he does best, tearing around their office, clambering on everything. And i-i-it was like it was so patently obvious. The autism was, again, a, a, a later diagnosis. I think he was probably, maybe seven, seven or eight. And that was, again, we started with a new psychologist. 'cause again, the previous psychologist was kind of, "Oh, all of these behaviors and things are just because he's intellectually gifted. He's not been challenged enough, so that's why he's presenting with all of these things" as th-th-they were comorbid to his intelligence. And so we changed psychologists 'cause our previous one went on maternity leave. After a few weeks, I said, Do you think with my son, do you think he's, you know, autistic as well? Because there's so much going on." And she's looked at me, and she's kind of gone a bit pale, and she said, "I'm so sorry. I just assumed that he had already been diagnosed because he is such an evident presentation. How has this been missed all of these years?" And I've gone, "Well, I don't know."

Leisa Reichelt 12:03

And were you, like were you across PDA at this stage as well?

Rachel C-G 12:07

yeah, I think I was very early to the party on that one in that I've got family in the UK. I've got this amazing woman who I met for 11 days on our honeymoon in 2003, who I've never met again in real life, but we found each other on Facebook a few years later. So we were sharing those-- Like her kids are a bit younger than ours, but we were kind of sharing that information and there was a lot more information in the UK about PDA and a lot more understanding. So she was sending me re-resources, And I actually went to a very early on a seminar that Tony Attwood held in Launceston. I drove up to the other end of the state to see it. And that was one of my questions I put to him, is what his thoughts about PDA. And at that time he was still framing it as oppositional defiance, which both of my children had been diagnosed with. So before the autism diagnosis, there was oppositional defiance disorder. There was, a bunch about sensory processing, auditory processing issues, motor coordination disorders, couldn't go through a door straight, still can't. None of us can. They trip over everything, fall into everything, can't-- and walking, yeah, walking, none of us can walk, apart from my husband, it drives him mad, can walk in a straight line. Like we'll be going down the street and we're just wandering into people. So there was all of those early diagnoses which just basically fall under that umbrella now.

Leisa Reichelt 13:23

Rachel, for anyone who's listening who's not familiar with PDA, can you give us a definition in a bit of a nutshell?

Rachel C-G 13:30

It's used to be called and still is, and it's only in recent years it's been recognized formally in Australia, and some people are still resistant to it, Pathological Demand Avoidance. they're now calling it pervasive demand for autonomy, which kind of sits with me better 'cause again, anything that's pathologized is just like, And the difference between, the defiance, the oppositional defiance is the lead point of oppositional defiance is refusing to do something in a very extreme manner to get out of doing something that is a non-preferred task or to get their way around something. So it's much closer to a tantrum-like behavior as opposed to a autism overwhelm behavior, which is not driven by wanting anything. There's no endpoint. There's no goal attached to it. There's not wanting anything. It is just a, an overwhelm that you cannot manage that leads to what other people perceive to be a tantrum. But there is no endpoint. There's no goal. There's no thing. And so with the PDA, and it's really hard to watch. For instance, my daughter, when H&M came to Hobart, it was massive. It's, "Oh, a new department store. This is amazing." She was very into textiles and clothes, and she wanted nothing more than to go into H&M and go looking at clothes. She had some money I'd given her, and we never actually made it into the store because the demands, that excitement of that build-up of going and doing the thing, and then she got to the glass doors, and she couldn't bring herself to do it because that internal, anxiety, threat response was overriding the desire and the want to, and it clashed perfectly.

Leisa Reichelt 15:04

a sad thing about PDA, isn't it? That it's not that you're trying to get out of something. Very often it's something that you really do want to do, and yet

Rachel C-G 15:11

yeah, and it's very little things as well, like, the demand of-- People mistake it that it's external demands or expectations that are placed upon you. and it, it can be that, but more often it's actually just little internal demands that you place on yourself or the requirement of what is expected normal behavior like brushing your teeth. The difficulty around being able to actually get up and do the thing that, you know, it's literally two and a half minutes of your life. But the lead up to that and the, that perception of a threat and anxiety around it because you know it's gonna be a sensory thing that you're doing, and it just shuts everything down. So even drinking water, getting up to go to the toilet, feeding yourself, can be completely subject to the demand avoidance. I mean, the way we found it is that it becomes more extreme the more the social burden and the anxiety burden is. So the more you do and the more you engage, the harder it becomes to do those things.

Leisa Reichelt 16:06

let's go back to your son, shall we? Let's go back to, like, year three, year four. So we're with the more disciplinary teachers who are not offering those accommodations, after having a couple of more understood years at school. How was the second part of primary school for your son?

Rachel C-G 16:26

So there was a principal change. and we had high hopes 'cause as a classroom teacher, this person had been really good. But again, I think that transition from being a school teacher into that principal role, again, there's an internal shift of, "Okay, I've gotta be the disciplinarian. I've gotta be managing everyone." That wasn't great. And by now the bullying was absolutely rife. I think the bullying has been there all the way along, but my son had been partially oblivious because it was happening around him, but he didn't feel it happening to him. But by now, everyone knew what his triggers were. So there was packs of boys that would follow him around the classroom or follow him around the recess and then when the teachers couldn't see, they'd trip him up, and they'd poke him or they'd say things that they knew would piss him off. And one of his suspensions was an absolutely spectacular one, 'cause at that time, again, we were looking at doing all sorts of things for coordination. So we put him into Wing Chun Kung Fu, which worked out quite well for a while until COVID, and that was a disaster. So he struggled with that. He was slower to learn, even though he's got all the brain power, his body was slower to learn and remember the movements, and he had to put in 200%. The teacher at the time initially took a little while, 'cause again, Kung Fu is a very disciplined sport, but there was breathing, there was relaxation, there was meditation attached to this style of Kung Fu, and it's very much based on self-defense. So by the time this pack of boys has spent six months giving him hell, he, and it, it was one of those things where you don't want to be proud of them for lashing out, but he did it in such a well-considered and thought-out way. He'd been collecting the sticks, and these guys went and grabbed all the sticks and threw them over the fence into some poor neighbor's backyard kind of thing. And then they were following him around saying shit to him, saying stuff to him. And so he lashed out, and it was a spectacular one because, he hadn't punched anyone and he hadn't actually properly kicked anyone. What he'd done was, a pull up, a short punch a heel strike that he pulled up so it was a bump on the face, but it wasn't a thing because he'd been trained not to do that to people. So he used this Kung Fu technique to pull it so it wasn't gonna hurt this kid. And the kick he did was a roundhouse kick into the thigh, which again is it's not gonna break any bones, it's not gonna damage his knee or anything, but it was a way of getting this boy to go away from him.

Leisa Reichelt 18:44

Mm.

Rachel C-G 18:44

I like got the call 'cause again, like two or three times a week I get a call from the school to go in and sort something out or pick him up or there'd been a meltdown where he wasn't coping or something had happened, he'd thrown a chair. And the suspension notice, was basically that he had forcefully and willfully and with malice attacked three other boys. and that he was being sent home for a week. And we kind of sat with it and thinking, "Hang on a second. So they went back to the school and said, "Okay, what are the consequences for the boys involved in this? What's their punishment? What's their..." You know, 'cause they've been hanging around to him now for weeks and antagonizing him and we've been to the school. We've said what was happening, and they just ignored it. Oh, boys will be boys. Oh, yeah, it's gonna, it's gonna, he's gonna develop resilience

Leisa Reichelt 19:26

Yeah

Rachel C-G 19:28

We ended up, we had a meeting with a number of staff members And in the end, 'cause of course that suspension notice gets lodged with the Education Department, and that's in their file for life with the Education Department. And I did not want that on a potential future school record. So they ended up modifying it that it was, he was provoked and he lost control and then, lashed out. That was what it was. Every time an event like this happened, he was so upset with himself for losing control, and he didn't want to be that boy who hurt people or lost control at all. He never, ever, ever wanted to lose control in any of those settings.

Leisa Reichelt 20:03

Things didn't go so well at that primary school, suspensions, bullying, and then you were successful in finding a place in the school that you'd been trying to get into, the small place

Rachel C-G 20:17

Yeah. Yeah, and that actually took, getting outside advocacy. And we did have a really strong case because everyone knew that he could not go to our catchment high school 'cause it had destroyed my daughter. So we knew it would not-- it, environmentally, the way the school was run, he would not have survived it. His psychologist, his occupational therapist, the principal at his old school, the one who'd been suspending him left, right, and center, and the other support staff there were amazing. They all, kind of agreed and wrote-- We all wrote joint submissions as to why this was the place for him to go. And again, it didn't get anywhere with the enrollment, so I went to the Association of Children with Disability Tasmania and, asked to engage one of their advocates to act on our behalf. And so we engaged her on the Monday. She had a conversation with Learning Services South about our application for out-of-area schooling. One of them is if your work is closer to the school than your home is, so it's easier to drop them off is one of the things. There's four line items, and one of them is because it's an exemption on the basis of the benefit to the child, the wellbeing of the child, which is the one we were after. So on the Friday, I had a call that the Learning Services South were taking our case as a serious case to investigate. By Monday, that person had called both schools, called the old school and the potential school, spoken to them, had read all of the reports, called me on the Tuesday, gave me an interview, and on the Wednesday, he was fully enrolled in a new school, and they'd already started planning his transition, So it would've been, Wednesday, seven, eight days, yeah

Leisa Reichelt 21:52

But how long have you been working on a podcast?

Rachel C-G 21:55

It was just over 19 months

Leisa Reichelt 21:58

So there's a red hot tip there, isn't there? get an advocate involved if you're in a

Rachel C-G 22:02

Yeah

Leisa Reichelt 22:02

like this

Rachel C-G 22:03

Yeah. And look, we had overwhelming support. The pediatrician had written a letter as well. There was just all of these people had gone out so hard to bat for my son to get him into this school. And look, it wasn't perfect either. There was a learning journey for them, very much so. But they were there every step of the way for us. And there's still been missteps. Like it's very hard to get people out of a certain pattern of behavior and habits as teachers and as principals, that mindset.

Leisa Reichelt 22:30

Your son is now in year 11. He's still at school. He's doing well. Tell us about what's happened between starting at that school and getting through to year 11 that has worked for him. What have been the keys to success?

Rachel C-G 22:47

The school being highly adaptable to his needs. And they weren't extraordinary requirements or needs or anything. They were like, "Keep him away from the substitute teachers," because obviously they do not get the message, and that is an instant kind of pressure point where they say, "Oh, he can't leave the classroom" or whatever, and then that's gonna trigger the PDA.

Leisa Reichelt 23:04

How does that work? Because probably loads of people if they've got, well, definitely high school kids, but probably primary school as well, substitute teachers are just like a part of school life these days. So how, how do you achieve that?

Rachel C-G 23:17

Again, it was because the school themselves could see how he could go from being calm, engaged, and, and again, if he started to feel overwhelmed in class and his teachers knew to let him go, he could go to his safe spot. He'd go and have some peas and corn because the peas and corn carried him all the way to the new school and through. He doesn't have the peas and corn there now, but right up until grade 10, I think he still had peas and corn at the office, and he could go to the office ladies anytime and chillax there. And there was also a bench that he could go to. So he was allowed, he was given the agency and autonomy to make a decision about how he felt and his wellbeing, So there was a trust. There was a trust between him and the school that He wasn't doing this deliberately. This wasn't a behavior. This was a need that could be managed really well as long as they gave him the doors to achieve it. And that was that, again, open, clear communication and him being able to advocate really well for himself though. He was able to say, "This is what I need to do. Please let me do this'

Leisa Reichelt 24:08

So say it's Tuesday and he's got maths, and his maths teacher is off doing training, and so therefore there's a substitute maths teacher. What happens? What's the drill?

Rachel C-G 24:18

The office people were lucky 'cause they need to check him in that he's there. the support needs teacher was-- she's amazing. She's really on the ball, and she'd go, "Okay, I've seen." She'd look at the rosters. She'd go, "Oh, there's a sub for that class." and again, there was kind of like the communication system, I think the support teachers are able to see who's supposed to be in class and who's not, and they'd just check out who's out of that class. And he would go down. He'd either go off to the library or go down to the resource room to sit with a special education needs coordinator, And he'd just spend that lesson down there reading books or doing alternative stuff that would keep him calm and refreshed so that the next lesson he went into that didn't have a support teacher, he could just engage with that. So that was a really,

Leisa Reichelt 24:56

That's really good. And I think there are loads of people probably who are listening who would be able to go, "Okay, that's an accommodation that I can now try and copy and paste," because, like, such,

Rachel C-G 25:09

Yeah, it does take work from the school. The other schools that we went to, they would not have even bothered to entertain the thought because he's missing school time. He needs to be in class and blah, blah. And this school has kinda gone, "Actually, it's a little bit of extra work, a little bit of extra typing," but they could see the benefit of let-letting him have that space. the other big thing was around absences, 'cause there'd be... it hasn't been full-time for a good few years. Probably grade eight, he was skipping days here and there a lot. and there was times where I thought, "Okay, we're, going in the direction where there'd be some time we hadn't been at school for two weeks." And I was like, "Oh, God, how do we get him back?" and it was Okay. He's got subjects that he really likes, and I think he got about grade nine when we could see it was becoming really wobbly, and we were right at that cusp of him disengaging and just going, "Nope" to everything was okay. And, the subjects that he had the biggest struggles with that were going absolutely nowhere, and this is despite years of speech pathology and handwriting, because he's got dysgraphia as well. He cannot write more than a sentence, and he probably never will. We have had years of doing handwriting things, and, my handwriting's rubbish too. And by this time we had a positive behavior practitioner who is amazing. He's got lived experience, bucket loads of lived experience himself, and he fully gets PDA. He's kind of like, that's his whole bag, is working with the demand avoidance. So we all agreed that we just burn the subjects that he can't do and hates, that upset him, because it... Like, if he had double English in the morning, he could not do maths. He'd be there so upset and agitated and I'd have to go and pick him up, and we'd just lost a whole day of schooling. So we came to the conclusion that we would all work to his strengths and the subjects that he likes to go in for, which is maths and marine studies. And he was doing MDT as well, and cooking. So he loved cooking, loved MDT, and loves his maths and, the marine studies was a no-brainer because he loves swimming, he loves water, he loves boats. He actually achieved his motorboat license there in grade 10,

Leisa Reichelt 27:11

Amazing

Rachel C-G 27:14

yeah, we burnt all this, like, history, social science, English, anything with a high literacy quotient to it, we crashed. We just, "Nope, we're not going in for those days," and we only focused on the stuff, his strengths. So his maths, and his science. But, we had agreed that he was probably, if we stuck with his strengths, then there may be a chance that he may not get a TCE, which is the Tasmanian Certificate of Education. You basically have to get a technology tick, a literacy tick, and a maths tick. Apparently he's only gonna get the maths tick because of the maths. And we've got a plan about getting the rest of it in place, over next year. But there was a degree of flexibility for my son. I'm not entirely sure how the school, 'cause it was driven by the school, that they were able to roll that six months over each time. Like they kind of have a reassessment with him. And again, we could all see how the benefit of him only going... So back then, I think he was going to school, on a Tuesday, Wednesday, Friday, I think it was. And again, it's highly modified because he's only doing, maths methods three, marine studies And he's doing a third party that provided Certificate III in Aviation, so that's drone piloting. And there's communication issues there that we have had, and I think we finally worked those out because, of course, this is the third-party provider who's used to training adults, you know, 25, 30-year-olds who want to become drone pilots and get their radio operator's license. And it is very different working with a cohort of 16, 17, 18-year-old kids and how they learn that. Like, they have to have explicit instruction. Like, "You have a test coming up next week. Write that down. Remember it, boys." Because they had a test they had none of them knew was coming. They all failed it, and it was not, not a mess. we've worked our way through. So that's fine. So again, having that, um, flexibility and that willingness for the schools to operate in a non-traditional way, I think is, is been really the saving grace in that instance. And we also found that was one of the instrumental things when we were trying to reintegrate him back into doing some English or whatever, that it would have a knock-on impact on everything. So he'd stop going swimming. He does a D- Dungeons Dragons group on a Saturday, which he adores. He stopped wanting to go there. Didn't wanna leave the house. He didn't wanna leave his room. Didn't wanna leave the safe space. And it's just like, "Oh God, here we go again." And the solution to that was to take the stressful things away and work to his strengths as much as we could.

Leisa Reichelt 29:37

So big messages that I'm hearing here are very much about playing to strength and having that flexibility. And I think that that's what we hear from families all the time in the School Can't is when you've got a school that's willing to work with you and be flexible, it's amazing what becomes possible.

Rachel C-G 29:58

And look, the, positive behaviour support practitioner that luckily we have through the NDIS has been incredible. His struggle, 'cause he goes in and does a whole of school delivery. But that's his preference, is to go in and do a, like a, a PowerPoint of this is this person, and this is what they need from you in the classroom. This is how your classrooms need to be structured. These are the top five things you need to do with accommodations and things. And he's amazing. He can't get into most schools 'cause they won't have him in. They don't want outside input. They don't wanna have anything messed with. So he finds it very hard to do that. And he did say that this particular school that he's at it took about nine months to set up to get a day where he could go in, and they could only give him an hour. But they've kind of gone, "Well, why wouldn't you, if you've got this outside resource that is, you know, he's a psychologist by trade, moved away from psychology into the specialized positive behaviour support section, incredibly highly qualified, incredibly highly trained, you know, preeminent in his field of autistic kids and PDA kids. Why would you not lean into that resource and have him in and have him help us? Because if everything that's gonna help my son is also gonna help every other neurodivergent kid in that school. And as we know, as it turns out, every other kid in the school as well, because those tips and tricks and things that work for our kids actually benefit all of mankind. He actually has been in two years in a row and delivered his PowerPoint. He said it's been amazing because again, this school has been very different in that he's done his thing, and then he couldn't leave afterwards because he was only supposed to be there for an hour. And when I say whole school, I mean the canteen people, the gardener. Every person who was physically gonna come into any contact with my son at that school at any given time was involved in that training and that learning. Afterwards he could not get away because he spent another hour where the staff members who didn't need to be there stayed back and asked him about, "Oh, I've got this situation. How do I handle that? I've got this boy that's doing this. I've got this girl. How do I manage that. And again, that was a cultural shift that the entire school went through, which everyone benefited from. And again, him teaching how much flexibility is needed with these P- PDA kids in particular, was the seismic shift for them and for us. It was amazing

Leisa Reichelt 32:07

Yeah. that mindset shift is incredible, isn't it? And it's something like we have to go through it as parents and carers and then, yeah, and all of the folk around them who are supporting them going through that so beneficial for our kids as well. If, Rachael, you were, gonna give a piece of advice to other parents who are earlier on in their journey with their kids, perhaps they've got autistic PDA kids as well, what's your one thing that you would really like everybody to know?

Rachel C-G 32:43

Stop, doubting yourself. Trust your instincts. I, all those years with my daughter, I second-guessed myself and, you know, those early years I bloody tried to super nanny her out of her behaviors and things and, you know, naughty steps and... Trust what you feel inside is best for your child. Back yourself. I didn't do that. I, I allowed people to sort of say, "Oh, you know, you can't do that," or, "That's not possible," or whatever. And it's exhausting. you're gonna be exhausted. You're gonna be second-guessing yourself. You're gonna be feeling, excuse my French, guilt for days, guilt for years. I still have enormous guilt for what I could have done if I'd known what I know now. But the core of that is actually trusting myself that I was right all along. I was right all along, and my husband was right all along, and we were just gaslit by everyone, the education department, the medical system. So back yourself, trust yourself

Leisa Reichelt 33:36

Amazing. I know that you do a lot of advocacy work now as well, but off the back of all of the experiences that you've had, and in particular at the moment you're doing a lot of work around the NDIS. Wonder if you wanna just take a couple of minutes to tell folk a little bit about what's going on there and what kind of action they might wanna consider taking?

Rachel C-G 34:00

Yeah. So there is a seismic shift planned for the NDIS. I think everyone's aware of it because it's all over the media constantly And the bill that has been proposed by government. So budget came out the other week, and hot on the heels of the budget, two or three days later, this new bill to completely change the NDIS has been drafted and has been presented. It has the potential to be enormously damaging because it actually gives any minister, it doesn't matter whether they're, whoever's in in the next 10 years, whichever minister who is minister for the NDIS and health, enormous powers to make decisions about your plan without being a medical person, without reading reports or documents, or even listening to the NDIA CEOs themselves. This gives that person enormous power to override everyone, and it is, yeah, I won't go into the details of all of it because there's, I think there's 35 amendments or 35 things that they want to change. and none of it is good. There's not a positive thing in there. and the, disability community throughout Australia are trying to block this bill and at least give it, because it's been so rushed. There's been no consultation. This whole bill has been drafted without sitting down with one single disability representative organization at all or any co-design process. And then the response to the bill, normally they would give you 30 days for submissions to parliament from concerned citizens or allied health people or whoever's it's going to impact. They've given us 10 working days to do the submission. I've written a submission. people all over Australia are writing submissions, allied health practitioners, disabled parents, parents of disabled children, are doing our best. We have had protests, two weeks in a row. There are further protests planned, just to get people's knowledge, because again, everyone sees what's been written in the Australian Financial Review or The Australian or whatever, talking about this, you know, the people getting free cruises and free haircuts, and none of that is actually true. It's absolutely outrageous how the media have been used to tell a tale about what disability in Australia looks like. But there is a very strong movement of people who are doing as much as they can. And some people, all they can do is, fill out a petition or sign a form. Other people are writing full submissions, other people are protesting, other people are going to Canberra to speak directly. So you're not alone in your concern, and we are doing what we can, and it's not over yet

Leisa Reichelt 36:26

And if people wanna follow and stay up to date with what activism is happening at the moment, do you have a recommendation of like who to follow on that?

Rachel C-G 36:35

Okay. So there's a couple of really good information sites, and also activism sites. So for information, I cannot speak highly enough of The Growing Space. Sam there is absolutely amazing, and she has been on top of every single nuance of this bill and what the changes mean, and she's been a fierce advocate as well. There's also a group called Disabled People Against Cuts, DPAC. And again, this is not a disability representative organization. This is just a group of people who have come together who know what the impacts are gonna be, and they have done some amazing work on getting, forms to fill out or suggestions about petitions. The Australian Neurodivergent Parents Association, ANPA, is doing again a lot of heavy lifting when it comes to advocacy in this space. There are some very, very, very smart people, with legal backgrounds in there. And specifically in Tasmania, there's the Regional Autistic Engagement Network.

Leisa Reichelt 37:31

Fantastic. Well, we will put links to all of those in the episode notes if people wanna find out more about all of those.

Rachel C-G 37:38

One other thing the Association for Children with Disability have been an invaluable resource for me as there's advocacy there. There's a peer support group for parents who are struggling. I haven't been able to attend a meeting for several months now. But that peer support has been essential. There's been lots of resources. They'll link you into what's available. A lot of the stuff that we get to help us is word of mouth. We just hear from other people We've got ACD TAS, but there's ACDs all over Australia. And they've been an essential help for me for years and years now

Leisa Reichelt 38:10

That's a great tip. you, Rachel, for coming and

Rachel C-G 38:13

It's okay

Leisa Reichelt 38:14

with us and sharing your story and sharing all your information. I really appreciate it

Rachel C-G 38:20

Yep. And I hope it's some hope for people, 'cause I know it's hard when you're at the coalface to see the light in the dark. and what we've been able to achieve with our son is, I didn't think we'd be where we are. And we've got a plan for next year. We've got a really cohesive plan to get him his ticks so he gets his TCE. and that's done again with some amazing teachers and amazing school staff who see the need, and they've found the workarounds. So it can be done.

Leisa Reichelt 38:43

Fantastic. Well,

Rachel C-G 38:45

Thanks so much for that.

Leisa Reichelt 38:47

Thank you so much again to Rachel for sharing your lived experience. It is always so reassuring to hear examples where changes were able to be made, and they made real differences to our young people's lives. I have put links to the resources that Rachel mentioned in the show notes in case there was anything you wanted to look into more. If you know anyone who might find this podcast helpful, please do take a moment to share it with them. I would be so grateful. We love to hear from you. So if you have feedback or suggestions or perhaps you'd like to share your own lived experience story, you can use the fan mail link in the show notes or just pop me an email to schoolcantpodcast@gmail.com. Now, if you are a parent or carer in Australia and you are feeling distressed, please remember you can always call the Parent Helpline in your state or call Lifeline on 13 11 14. Please do not hesitate to reach out for extra support. Thank you again for listening. We will talk again soon. Take care