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School inclusion

 

Survivors of childhood stroke can face serious barriers to education. Inclusive education means every child is welcomed by their school and supported to reach their full potential.

In this episode of the Childhood Stroke Podcast series, we speak to a survivor of childhood stroke, a parent and a professional working to improve inclusion in schools.

Guests:

  • Hailey Mckirdy, a survivor of childhood stroke, lived experience consultant and disability support worker.
  • Alison Scotti, mum to a survivor of childhood stroke and assistant school principal.
  • Kate Heine, founder of Heads Together for ABI, which supports young people and families impacted by acquired brain injury.

Helpful links:

Transcript

Simone: Welcome to the Childhood Stroke podcast series. In this episode, we're talking about the important issue of inclusive education and inclusion in schools. Children with a disability faced serious barriers to education and every child has the right to quality education to be able to learn, play with their peers and develop the skills that they need to thrive. Inclusive education means that every child is welcomed by their school and supported to reach their full potential. They're included in every aspect of school life and are valued members of their school community.

In this episode we have a survivor of childhood stroke, a parent and a health professional working to improve inclusion in schools. And I always say I have the best job because I get to meet the most incredible people and today's episode is no exception.

We've got Hailey joining us. Hayley holds several positions working part time at Heads Together for ABI as a lived experience consultant. Hailey also is part of Stroke Foundations Childhood Stroke Lived Experience Advisory Group and Hailey works part time as a disability support worker for young adults with acquired brain injuries. Hailey has lived experience of stroke, having had a stroke at the age of 6.

We also have Alison Scotti joining us, who is a wife and a mum to two boys, Thomas, 18, and Christian,13. Alison works full time as an assistant principal in a public school in NSW and coordinates diverse learning. Alison's focus is always to support students and their families as they navigate the primary school years with their children with additional needs.

We also have Kate Heine, who's joining us, and Kate is the founder of Heads Together for ABI, a nonprofit based in Victoria which connects and supports young people and families impacted by acquired brain injury. Kate has worked with young people in schools for the past 25 years, both as a specialist paediatric physio and through Heads Together for ABI. I'm really excited to have you all on this episode. So welcome, Hailey, Alison and Kate.

Alison: Thank you. It's really exciting to be here.

Kate: Hi, Simone.

Hailey: Yeah, really excited as well.

Simone: So Hailey. I'm going to start with you and you were six years old when you had your stroke. I'm interested to hear a little bit about your experience of not just having the stroke at that age, but also what school was like for you.

Hailey: So I had my stroke midway through prep, so I kind of sort of started school like any child would. But midway through I had my stroke and it was kind of sort of very tricky trying to reassimilate into a school system. Because I was also kind of sort of learning on the fly what having a stroke and like learning the new scary things that my body was now doing just you know, kind of sort of struggling with the basics of opening my lunch box to just remaining awake for the entire day. It was really tricky. As well as I also had issues with gaining funding for an aid because I just didn't fit the education systems boxes at the time for funding, which I think is something that a lot of young stroke survivors struggle with as well. Because back in those days it definitely was set out for anyone with a brain injury or stroke like symptoms. It's kind of sort of very unheard of.

I know that at school my teachers did try to reassimilate me the best that they could, but this was kind of sort of in a very put down kind sort of way. Like I'm trying to sort of explain things to my peers in a funny spin on it. But I think that that kind of sort of did more harm than good. It didn't really relate to an inclusive environment because it just created a bullying type atmosphere.

But I know that my mum definitely involved me in any and all conversations that were had in regards to inclusion in school and any issues on like discrimination or ableism, which I found really, helpful for myself. Like you know, learning skills and that for post um schooling and that because at the end of the day you're going to need to advocate for yourself for the rest of your life really when you're living stroke or any type of disability or anything where you need special exceptions.

I found going through the mainstreams system to be quite difficult because very I did go through the mainstream schooling system. I found it really hard because a lot of my teachers and peers didn't understand the physical demands and fatigue that I was facing. Staff often put me into the too hard basket, which kind of sort of did affect me being included in certain things. In that like also came down to like academics and bullying scenarios as well. They just sort of put it in the too hard basket because I've never had to deal with any type of bullying in that regard. Because I did go to a mainstream school and I was the only one with a physical disability or brain injury. And this kind of sort of led to me, just like, you know, just refusing school for some time because I kind of sort of understood the environment that I was in.

Simone: It sounds like a really tough, you know, a tough entry back to school, Hailey. And then you said you stayed in the mainstream system throughout high school as well. Were there particular
things that stand out to you that teachers or peers or even members of the community for other families did that fostered more inclusion at the time? Or would you say it was all a fairly negative experience all around? People made attempts, but they didn't quite meet the needs and it was the family that your family that really sort of supported and bolstered you.

Hailey: No, don't get me wrong. There was definitely some good experiences. I definitely had some really amazing teachers that definitely fostered that inclusive behaviour. Things like, for example, I went to a Catholic, all girls high school that had looked like it came straight out of Hogwarts and there were like five flights of stairs that I had to navigate my way with books and that. And just kind of sort of they make knowledge that I was a bit late and that without making a big deal of it. Because you know getting from A to B with books and that dealing with fatigue and everything that encompasses like having a stroke at that age just kind of sort of being acknowledged as a young adult and having them cause sort of not make a big deal of me being late or may not um me taking extended breaks from classroom and things like that. And them not having them make a big deal of it. Not having an in depth discussion as to why I was missing from class for 10 minutes. Just kind of having that level of understanding there.

I know for me personally, I also went to go see their school councillor, which was really, really, really, really helpful for me as well, because the school system wouldn't let me drop subjects that I didn't say is being vital to my learning. Like for example, trying to learn a musical instrument with one hand. It's kind of a bit of an uphill battle and it wasn't something that I really wished to pursue later on. And religious education in year 12, when you're trying to get all your VCE subjects and that trying to sort of sorted, it's not really vital. So seeing the counsellor in those times was really helpful to me. As well as sort of, coming to terms with the fact that I was finishing up my education and dealing with the change of, you know, change of life really when it comes to, you know, going from school to, you know, further education and so on.

Simone: Kate, I saw you were going to jump in before. Did you want to join in the conversation?

Kate: Well, I'm. I'm a terrible butt-a-in-a. But I have known Hailey since she was 8 and was lucky enough to work with Hailey at school when she was in high school. And Hails I was just thinking about your situation with going on the trip to Italy, and I thought it's a really great example of, you know, where you fought for what you knew you wanted and deserved. And yeah, I think it's a Do you want to tell everyone about that?

Hailey: Oh yeah, sure, I know that. My mum and myself, there was a school trip offered in high school that was to travel to Italy. But I was told that this wouldn't be the trip for me because obviously my physical needs and that and they're just like, we won't be able to do that. Just a flat-out no. My mum's like, OK, well, can I get that in, in writing, please? Because at the end of the day, you know, there should be teachers there that are, it should be well staffed. And they're like, they told my mum that they wouldn't fund this, so she would have to fund this. And my mum went on to say, OK, can I get the reasons in writing? Because I'm going to take this further. And you know, saying my mum go through that process kind of sort of did help me in the future as well. But I know that my mum held them accountable for what they said. Asked them for it in writing. Like 48 hours after that they're like, oh, we found the funding magically. But at the end of the day, I think it's really important to like also trust the person with disabilities opinion on the on themselves and they know what they're capable of. But at the same time, that definitely didn't foster an inclusive kind of sort of a place. It just kind of sort of felt a bit like an uphill battle for me to just be involved in basic trips and and and that and it did kind of sort of make me feel like I was worth less than everyone else in the space. And that does create issues further on down the track. But I think kind of creating that environment of like, you know, inclusivity and that I think the teachers very much set the tone for that as well. Kids can't be what they can't see. And I think it's really important that they set the standards for other kids of what's expected of them, and they set the standard for those that need inclusive education to know what what's expected of others, really.

Kate: And I was just going to say I'm, you know, you did go to Italy and it was incredibly hard. But also I know it was one of the most amazing things you've ever done. And you know, I guess just having seen all the battles that Hailey and her family have fought and won, it just I think it's just so important for families out there to kind of take hope and and take strength from. It's worth fighting the fight because you know, like Hailey continues to sort of smash through every barrier that there is. And you know, and I and I think I wish that you didn't have to fight so hard. But at the same time, until we live in a world where you don't have to keep fighting because it's, you know, the, the impact that it has on how a person feels about themselves is absolutely unmeasurable. You know, And I think the other thing I was going to say just, you know, because Hailey and I've talked about this a lot, is that, um, you know, I think what you did, Hailey, that was so important and like impactful was that you really fought for what was important to you, even if it was in direct opposition to what, you know, the professionals thought. So I was just thinking about, you know, your decision around which high school to go to and then you know how you wanted to travel to and from school. Because I think, and you tell the story. But I think the part that really struck me the most is that it was it wasn't about the struggle, it was about how it made you feel. So do you wanna do you know what I'm getting at? Do you wanna chat about that? Yeah, you do.

Hailey: So when it came time for me to choose a high school and that it was very much a the choice between going to, I would describe it like a Steiner school. Very much free learning and that or I very much up. Well, a Catholic kind of sort of education. I don't really know what words to describe that in, but I ended up choosing the Catholic girl school in the city only because, like I knew at the time that I was really, really concerned that I would never have that level of independence and that did frighten me a lot. And I did choose to travel to and from school myself on public transport in the city, which kind of sort of did teach me an array of issues. But, don't get me wrong, I was exhausted by the time I got to school, and that probably wasn't ideal. But it did teach me a lot of things that I needed to learn to be accountable for myself and, you know, take pride in what I was doing and teach myself that level of independence and taught me to like, you know, learn language, to stand up for myself on public transport that would foster that inclusive type behaviour. And it did teach me to, you know, how to use our language and how to stand up for myself. But really at the end of the day, I just wanted to get to and from school because it made me feel normal and a part of the cohort of my classmates.

Simone: Wow. Yeah, it's. And your classmates were often on public transport with you and so you felt like you were one of them, despite having to encounter challenges in, in putting yourself in that situation. Very brave, I think, and courageous particularly what as a maybe 13 year old when you started doing that. Yeah. And you covered my question. I was going to ask actually. Kate and Hailey touched on it around, yeah, choice of school when moving. And even I think for parents thinking about primary school, if you know, your child's had a stroke prior to starting primary school as well around how important the decision is around choice of schools. So this is probably a question for everybody, but you've touched on it, Hailey, you were really for, particularly for high school, given that opportunity to decide for yourself. But yeah, curious just to hear some thoughts from all of you around. How important is that choice around choosing a school and what factors come into that?

Alison: Um, I'll jump in there, Simone. Can I just start by saying that was amazing to hear from Hailey as someone who's actually experienced it and been through it herself, you know? But it was great for me to hear Hailey because a lot of the things that you've done that were challenging but have been beneficial for you. I feel a little bit vindicated for pushing my son into some of those areas. As you know, I know we're challenging for him growing up and I'm hopeful that if he was ever asked to speak about it, that he would speak about it in that way and you know, feel that it was a really positive. There were positives that came out of those really challenging times for you growing up because it mirrors a lot of what he went through.

But just getting back to your question about schooling, I think school creeps up on families. You know, like I had a Thomas was our first born, so I was learning with him, you know, And my husband and I were like, what on earth are we doing? And being a teacher in a public school, I'm very much an advocate for public schools, particularly around inclusion and disability support, and my kids went to Catholic schools. So I think it is all about researching what's right for you and your family. And I actually picked a local Catholic school because it was small and I was concerned about the physical aspects around him getting around. And that was one of the things you mentioned Hailey, were the stairs at the school and it appeared that there was stairs everywhere. Didn't matter which school I was looking at. There were stairs, but it was a small school and whilst their support of him educationally, in hindsight is questionable. Their pastoral care of him and their love for him was that they were, they were wonderful with him. So I think you do have to do your research. You know, I spoke to principals of the local schools, whether they were public or Catholic. I went to and I knew about this as well. So I think this is really beneficial to do something like this for the people who are unaware of what avenues to go down, but to go to the local offices, whether they're the Catholic Education office or the NSW Department of Education. They have local offices in your area and you have disability inclusion, support people learning wellbeing officers available to you to talk to. You can meet with them. You can have a conversation about what the schools in your local area offer. And with public schools, there are quite strict in NSW enrolment policies around local area, but there are also enrolment panels that will support compassionate enrolments. Or, you know, whatever your needs are, whether it be that you have to work and you need your child to attend the before and after school care, whether you need someone in the local area to pick up your child, or whether or not that school offers programmes that are going to support their development. They will tell you what's available for you. And you can make that really informed decision.

I think the biggest thing to take away is a parent is that you've tried your best and that it's never wrong. Whatever your decision is, it's never wrong. And if you have to change it somewhere along the way, that's OK too. And I think if kids will dictate that to you a bit, like Hailey, who made her own choices, whether they are misbehaving or not even misbehaving, but they're acting in a way that, you know, is not what they’re normally like. They're trying to tell you that things aren't right and you can have that conversation with them or talk to the school and make an informed decision about, you know, what things have been going great. But I'm really not happy with the way things are now, and this isn't the place for me. And that's OK too. So, you know, I think sometimes as parents we need to give ourselves a bit of a break and say, OK, we we've got, we're trying so hard to make the right decision. But you know, you're doing the best that you can and the decision is right. In that moment, the decision is right.

Simone: Thanks Alison. I think some really good advice around choosing a school that's right. And Kate, do you have anything to add around this? I know you've worked obviously, you know, for many, many years and and and a lot of what you do is also around inclusion in community but also in schools. Anything to add around what Hailey shared some of the challenges that kids face today. Have things changed?

Kate: I'd like to talk about, you know the, the really complex and you know sometimes very challenging decision about which school to choose, especially entering the school system if your child's had a stroke before prep. And so we have a parents’ program and and we do a lot of knowledge building workshops and a lot of that is around education because our families, you know, our parents are particular education is really at the heart of what you know, of what of what they're most concerned about.

So with our parents' program we talk about school and and which schools to choose and when to change schools. And I wanted to share a story from one of our parents that I really love, and it really highlights what I think inclusion is all about. And she what she said was that the first primary school that they went to she always had a sense that her child was a burden and that you know everyone was bending over backwards to meet their needs. But it always felt like sure and and I think you know, again it was her first time so she didn't know whether she should just put up with that. But you know, driven by her daughter, she did decide to change that midway through primary school. And then the next primary school, she said, was such a different experience because it she was made, she and her family were made to feel like their daughter was a gift. And I think, you know for me inclusion is probably 80% attitude and culture and 20% you know, resources and you know sort of it's not about ticking boxes. It's about creating a space where you know where everybody feels comfortable. Like, I don't think people talk about, you know, comfort enough. They talk about belonging, but I think, you know, schools often inherently are places where most kids struggle with feeling belonging at some point, like that's normal. So I think it is more about, you know, it is more about really understanding what does it mean for a child with a disability to be involved? And that's not, it's not a simple thing. And I think probably, you know, thinking about this, the most important message that I wanted to send that I think gets lost so many times is that the young person's voice has got to be at the centre. Everyone always goes, Oh yeah, yeah, yeah but then it isn't because you know and then it's not a judgement but it's like even for our parent community who I think are so engaged and committed and positive, it's still quite what's the right word like eye opening for them when you know the young adults in our community like especially with Hailey challenge them around. Do you really know what your young person wants? Do you know how they feel? Do you know what they think? And they're like, oh.

Alison: It's really hard for me to take to put, I never know which hat to put on 1st, whether it's parent or teacher. But as someone who's coordinated diverse learning, so I work with the parents, K to six across the school, and my biggest message is about building relationships. You have to build your relationship first because you need a person. Everybody needs a person, whether you're outside of the school and you're navigating your child prior to school or whether you're in the school system.

And you know, something I always say to my staff and to families is that no one is here to make your life difficult, deliberately. They don't know a lot of the time. And that's because we are aware of what the legislation says, and we are aware of what our responsibilities are. But until you're in the experience and until you know you, we welcome kids from so many different diverse learning backgrounds, whether they're neurotypical or neurodiverse. They come with social and emotional needs, academic needs, physical needs, so many different things. And it's about knowing your kids, knowing your students, knowing how they learn, knowing what's going to make them really want to be here at school and knowing your families.

And you know, often I do have teachers that we do recognise in our students, you know, where sometimes there's needs but families aren't quite there yet, you know, and that's OK too. But I have to pull people back sometimes and say there is an acceptance, there's a, there's a whole space here before they're going to get on board because emotionally mums and dads find it really tricky as well as the kids. So there's this whole thing happening around balancing the making sure you've got the right balance when you, you know, the staff, they want the kids to be included, but they don't always know how. So I say being part of a team, you know, work with the school and I've been one of those parents.

I was saying this to you before we started Kate, when I've been to my son's primary school and high school, I found his high school did it so much better than the primary school. And that's probably because I was brand new as well to the whole parenting of school aged child but I would take my legislation, my highlight and my post notes. I was a crazy person and I would rock up there, you know, and I had to sort of take a step back sometimes and think, you know, I really want to work with these people. I don't want to, I don't want them to feel that I don't trust them. You know, I want to build the trust between us, and they're not always going to get it right, but I don't actually want to be accusing them of not getting it right either. I want to be able to work with them and teach them about my son. And he probably did most of the teaching himself, you know.

Also tapping into the services that you're utilising. Prior to school, you know, we worked really closely with the Cerebral Palsy Alliance. You had OT, physios, speech therapists, you name it, we had it. And not all our therapists were great for us either. You know, it's a bit like that, you know, when you, you go through that journey of this therapist isn't working for me, I've got to swap it out, swap her or him out and find someone else that works with my child. It's the same with school. You know, you don't always get the teacher that you like or that you engage with the most. It doesn't mean that they're not a good educator or that they're not good at what they do. It just means that you didn't connect with that person. So you need your person in the school to be able to support your advocacy of your child.

And this was another thing Hailey was talking about with advocating for herself. I think setting those SMART goals every year is about setting goals for advocacy for, you're the child's first advocate as their parent. You want their teachers to advocate for them as well across the school because their teachers have to educate the other staff members about your child, because every single child is individual. My son had a stroke, I found out when he was four days old. Very different probably to Hailey's needs in the school. Even though hers are physical, hers are physical I believe you said Hailey, as well as whatever other needs you had. They might sound similar, but they're very different. They're very much an individual. And as the first educator of your child, you're the person who gives all that information to the school. So I think building those relationships and building that trust, it supports your child as well because they're going to feel that comfort knowing that that mum or dad has that connection or carer, whoever's looking after the child has that connection with the school.

And I know, I think I can't remember it was you that said this, Kate, when you said you are sad that Hailey has to go through this. But yeah, keep going, you know, and this is our, you know, this is what we've got. This is a great opportunity to support education in our communities and and help people understand that, you know, this isn't a chore, this isn't an extra thing. These are human beings that you're working with and they're entitled to and it is our responsibility to make sure that they're included within the community. I think unfortunately, when it's a physical need, people automatically just think, oh, this is terrifying. I don't know how we're going to do this. I don't know how we're going to support this child, even though there could be many, many children with neurodiverse needs that you can't see in the school community. And we're trying every single day to include all of those people as well. So it's, yeah, it is a battle, but I think it's also a real privilege to be able to support that education as well.

You know, I mean, I can't actually believe I made it to Year 12 with Thomas. We made it through and I'm so proud of him. And he called public transport just like you did Hailey from year 7. And he hated me for it a lot of the time. Not necessarily with catching public transport, but a lot of the things I pushed him into. And now he's just really independent and so desperate to find his own way in the world, you know? And I'm proud of that.

Hailey: Alison if it makes you feel any better, when I was a teenager, I think it's like a rite of passage that you lowkey hate your parents. But my mum is now my best friend now. But just touching on what you were saying earlier, just regarding like over complicating things with people with physical disabilities. I've seen it happen so many times throughout my education as well, where they just assumed things where like, you know, when it came to PE and things and that I was just kind of sort of told to go to the library or whatever when they were doing something that I'm like at the end of the day. Like, I know this is gonna sound like they've just overcomplicated everything so much, but like I am the expert of what I am capable of doing, even though I might go about it a different way and might look slightly different doing it, I know what I'm capable of. I've lived with it 24/7 since day dot really, and I think your first port of call should be to have a discussion with the person that you're trying to give equality too in the education system. Like they might come up with the idea that is so much more similar and save you so much leg work and so much energy in like regarding anything that you're approaching.

But I think it should be the first go to for every teacher and that just to sit down and have a conversation with them. Like you know what works for you? How would you like to participate in this? Are you OK with this? It's all about being comfortable within the system and kind of sort of being approached like that. It doesn't make you feel comfortable it, it doesn't make you feel included. It doesn't make you want to open up to anyone about anything that your issues you're having at the time. And to be honest with you, I do believe that comfort within the education system is a really important thing as well. Like you know being able to have those open discussions with someone, with the student that you're working with, it creates that kind of sort of positive environment for inclusivity instead of kind of sort of close down, tick box, sort of thing which at the end of the day doesn't really push anyone to feel included.

Alison: And I think the modelling is so important, whether you're modelling from the child, whether you're modelling from the parent, whether you're modelling from the staff. If we show we're comfortable where we can do this, this is not a big deal at all. This is just you're learning in a different way. Children are I find, particularly in a primary school and correct me if I'm wrong, Hailey, most of the time, particularly from kindergarten, they don't come in there with any preconceived ideas. You know, it's like that was just Thomas, you know, from my experience with my son, yes, he had some, he certainly did have negative situations along the way where people made assumptions or made judgments about what he could do or how he could participate. But a lot of the time with his peers, that was just Thomas, you know. So I think if the adults around him were modelling that comfort
of what's the big deal, of course we're just going to find a way to ensure that inclusion, then the kids just went with it, you know, that then it wasn't a big deal for them either.

And and also utilising the expertise of the people that work with your child. So I'd have my physios go in to the school and I and now I call upon parents, and I say give me their emails, give me their phone. I need their help. I want them to tell me what to do to support your child in the best way that I can come in and observe. NDIS covers that. So NDIS covers school visits. It covers the time that it takes them to write reports to share with us and say, you know, this is a start, this is what you can do. I've been into your school. I've had a look at the physical environment. I've had a look at your programs. I've adjusted. I've supported you and that expertise, we're not experts at that.

So utilise the people that you have in your life that can come in and do that and and the first port of call is of course the child, like Hailey said, and the family and then those experts that work with them every single day. And somewhere along the way you find that middle ground because home life is very different to school. So, you know, you might often say, oh, we don't have those issues at home and that's because you're not dealing with 30 kids and you're not dealing with the environment. That's not an excuse. It's a fact. And so how can we do it better? OK, well this is what it's going to look like. This is how we can modify and make sure we're putting those adjustments in place. And it is the legal responsibility of every school to do that. You know, disability standards tell us that we have to make sure we're making reasonable adjustments and there's a lot of reasonable adjustments that you can make to ensure that the children are feeling included. And they shouldn't have to feel included. They should be included. That's the, the bottom line there.

Kate: Can I just jump in, Alison? Yeah, I was just going to say, I think that representation is such a critical thing. Like so you know we're really excited to be moving into a space of you know working more formally with schools around inclusion. And I think one of the things that we'll be doing with that is that we will be bringing both our lived experience consultants so and and our people that have more sort of clinical or professional backgrounds. But the aim of that is to really, as you said, Alison, model that people with their own lived experience have expertise not only on themselves but also on what it is like for other children. And I think that if we can do more of that and go into schools more often and talk about, you know what is your representation of people with lived experience. So do you have a, you know, do you have any teachers or support staff that have disabilities themselves? Do you have anyone on your school council that's the parent of a child with a disability? And if not, have you thought about how to bring that in there? Do you have students? You know, I think always, a bit of a sign that the school has a more, a better understanding of inclusion is that they've got kids with, you know, say neurodiversity or disabilities or whatever it might be in their student council representatives. You know that they're giving leadership roles to kids with disabilities. Like to me that is very telling. If, you know, if they're actually walking the walk of inclusion instead of just because I think so many not just schools but people talk the talk of inclusion and it's just words. It's just words.

Alison: Absolutely. And you know what I was saying before about peers, I'm so proud of the things that are happening in my little school here. And, you know, you'd be hard pressed to find a school that doesn't have neurodiverse children or families. And if you went into a school and they said, oh, we don't have that here, then that's inaccurate in my opinion.

One of the parents said to me the other day just so, so excited that we have you to advocate for our kids and it made me feel really proud that I just think I wish I do wish that everybody felt that same way. I think it's a fear though. It's a fear. It's a lack of experience. It's so it's don't be afraid to go out there and tell your school community about your child and about your family and about your lived experiences. Because they want that, they want that and they need that to be able to move forward and make sure that their school represents the kind of culture we want to represent with inclusion. We don't just want those words. You know, anyone can read from this from the legislation. Anyone can say, “Oh yes, you know you've got to know your kids.” It's the actions. You know actions are what's going to demonstrate to your community that you are a school that does that.

I loved my son's high school was another Catholic High School. I loved it. However, when he got to year 11 and had to choose subjects he loves, loved, loves, still loves it. Industrial timber, did it his entire year from year eight, I think when they got to pick subjects. But he always needed an aide for safety purposes. He needed a learning support officer in there. Then you know, subjects night came and he hadn't achieved the grades he needed for English and literacy to take part in industrial timber. I was thinking, I don't know how many books you need to write to build a table, but anyway and he was cut out automatically. So when he went straight into the computer to try and pick subjects, he couldn't pick any subjects. It was ridiculous. And I went, I did, I fought for him and I went to the school and I said I don't understand the premise behind not allowing him to take part in this subject. And he hadn't done Life Skills, which I'm not a huge advocate for life skills subjects in high school. I think a lot of the time it's an easy cop out because the kids are expected to continue to do the entire subject. They have to do the subject, they have to do the assessment task, but the teachers don't have to mark them. There's no it's just you've done it or you haven't done it. That's what Life Skills is. It's not. It's not some other there's no level of achieve. I just didn't understand how he's going to find a level of achievement or feel any success with life skills. So I refused that all the way through school and he did very well. The adjustments they made were amazing. But when it came to time for Industrial Timber I said he wants to do HSC Industrial Timber and and I said I I'm telling you he loves it so much that if you give him the opportunity he'll work harder than any of the other kids in the class to do what he can, pardon me to achieve this subject. Anyway, in the end they allowed him to do it. He made the most amazing table, did an awesome job, knows everything about the tools, you know. I guess they did.

They did encourage him to do life skills in the end because he wasn't doing an ATAR and he didn't need to do the three hour HSC exam that you've got to do for Timber, which was fine. I accepted that, but I guess I was disappointed that when it came to him making his own choices, another one of those battles, another one of those uphill battles faced us yet again and we went in there and we battled it out and we got what was entitled to him and he felt a real sense of self doing that. But you know, again, Kate, it's about that fighting, isn't it? It's about going. And it's hard. It's really hard. And I just wish every place could understand that all the kids have the entitlement to do whatever it is that they want to do.

You know, you were talking about, Steiner schools, Hailey, and I think I love the idea of a Steiner school or the Reggio Emilia theory that's out there. But unfortunately, schools are so structured. You know, we've moved so much in the world of inclusion and kids are individuals and you should all be able, you know, pathways for workforce. But schools are still these conservative, old structured, you know, settings that don't suit many of the children, let alone kids that are coming with neurodiverse qualities. But you know, I think, yeah, you made your choice, Hailey, to go to that school because I think it did lead to supporting your independence later in life when it when you needed to go out into the real world. And one of the things I do say a lot to my kids at school is this isn't about my job, is not to make your life easy. It's to understand the challenges that you're facing and how are you going to deal with those challenges in our world when you when you leave this little safe space of school. And I found that actually terrifying the day my son graduated from year 12, I thought, what now? What on earth do I do now? I mean, we'd set the scene and he's doing amazing things and he's such a great kid. But I'm still terrified. It's only been a few weeks and I'm like, “Oh my goodness, what does this mean for your future?” You know, so schools are great and they can set you up or they can bring you down. And we're trying to make sure we do the right thing for all the kids so that when they do get out the other side, they feel valued and they feel like that there's something they can offer.

Hailey: I know when I finished year 12 and that I was very, very lost as to what like what paths I could take and that. And I know from years of feeling like I was a chore to educators and feeling like that squeaky wheel and that. It definitely does, when you get out of that situation and you have time to reflect, it does definitely affect your mental health. And it got to a point of where I felt like I was such a chore to everyone. I was an obstacle. I was, I kind of did feel like a bit of a waste of space in high school, to be honest with you. I felt like I was worth less. And it definitely does affect you and I needed to get counselling from that. And I also went into like a really serious depression from that. So like not having that inclusive environment affects so much more than just their education. And I think that's something that needs to be weighed in as well.

Alison: Tell me what to do Hailey, tell me what to do.

Kate: Can I just jump in for a second? Because I was gonna say I that that experience that Hailey's just talked about, um, I would say from our community is unfortunately incredibly common. So many kids don't make it through high school because of the impact on their mental health. So many kids don't make it to tertiary education because they're so exhausted and also have such incredibly diminished self-esteem and lack of identity and and just no sense of self-worth. So I think, you know, Simone, when you were starting at the beginning and talking about how are we doing, from my point of view, we're not doing very well. And I think, you know, even from the point of view that it's really hard to find, to even find out like if we're just talking about kids with acquired brain injuries to find out how many kids are finishing high school and how many kids are going onto tertiary education. If the kids are dropping out, what are we doing around accountability and what are we doing around follow up? Because I'm not seeing it. I'm not seeing it happening. And I think, you know, I'm this is my soapbox as well, but it to me it always goes back to the child's voice and it's not enough to just say to just ask the child what they want. You can't. You have to foster that. You have to build that and you have to like. It has to be a culture that, and I think, you know, Hailey and I feel the same way that it's, you know, inclusion, like talk about comfort and ease and joy and fun and all of that. Because a kid is not going to share their voice if they're scared. A kid is not going to share their voice if they feel, umm, I don't know if they feel excluded or if they feel like they're sure they're just not going to.

Alison: I've got this incredible child that no one knows, you know, and no one will know if they're not giving him the opportunities out there, you know, and. I found a passion for him. And this is another piece of advice that I would give families with little ones, is put them in other activities that are outside of school. You know, I put him in a local soccer team just at the end of my street, and they weren't part, they weren't the kids that that team were not from school. And I did that deliberately because if things go to hell in a handbasket at school, you've still got your social connections at the soccer club or dancing or, you know, music or whatever it is that you've chosen to do. And he was a grass picker and he stared at the clouds for a really long time. And now he's representing NSW is Pararoo and um, he's in the train on squad for the Australian Pararoos and he loves his soccer and he's actually got a personal trainer who has tapped him into the local footballing associations and got him some casual work, just opening fields and doing things like that. So, but I've had to have someone in that sector help him. He couldn't just go out into the into society like the other kids and go and get a job. He needed to have these people back him up, which they are amazing, and I love them dearly for loving my child and for supporting him and for being true believers and advocates in this area. But it's completely unfair.

Kate: It absolutely is. And I think you know you've sort of cottoned on to something that I think is incredibly important to this. You know idea of inclusive education is it has to be about the can do, the passion, the interests, you know I think and and again that's just, that's just makes sense. It's what you want for any kid in the world is to find something they love and then you know like I always talk about it as the most important thing that you can do is to understand what lights up that kid and then flame that, flame that.

Hailey: School is like a time where you discover who you are and that. And I know a lot of kids that have strokes or cerebral palsy really struggle to find their identity and discover what that what it is they want to do because they feel like they're defined by their therapies, their diagnosis, their what they can't do. And I think it's so important to kind of sort of as you said, like flame what they what it is they like. Have something in the school that's for them, something they enjoy. I think that's so important for like self-identity and in order to discover what it is you want to do and be in life. Because I know for me for several years post like you know, having my stroke, I didn't know what it was that I wanted. And I didn't have any interest. I didn't find anything that I like, had that drive for and I think it's so important to have that because it's you're pushing force. It's what makes you get out of bed and want to go to school and to feel included in that because I think

Kate: Hails, I'm trying to think back but it seems like from my recollections that with you it was art, that you started discovering like a real passion for art. And then, you know, that became such a central focus of kind of, you know, it was a something that made you feel good. It was something that you knew you were good at. And yeah, Is it, am I on the right track there?

Hailey: Yeah, I'm just like trying to say like, you know, it's so important to find something that, you know, that is for them and um, something that gives them that drive. Because at the end of the day, you just have a kid that's following through the motions and going through life on autopilot. It's not really encouraging or fostering an inclusive environment ‘cause they're just going through the motions.

Alison: That's right. And they need that drive and you know with the art, you know I was thinking about this with Thomas’ football, it is his emotional support, it is social support, it's the way he engages with everybody. You know he can, he can get a friend, he can ask his friends to go to a game, you know, and go what. They can go on a Saturday night or a Friday night or whatever afternoon, hang down at the local club, go to the park, go to watch a Sydney FC game, whatever it might be. And he can talk and talk and talk about football. He found his passion and he love it and it is something that really gives him an opportunity to engage with his peers. And that is what all kids have. You know, in different areas they might talk, talk about motor racing, they might talk about the beach, they might whatever it is that is their passion. And then he goes and finds his people and he finds his little crowd and that's what and and you are absolutely right, Hailey. But I think we have to, as parents push, sometimes we have to push our kids into that because there is fear. I know Thomas, growing up, he didn't want to be different. And even at preschool he used to sit in a corner and watch the kids do physical activities and then when they all went inside, he'd have a go when no one was watching. He didn't want to be seen to fail. He’s still a little bit like that in that he won't do things until he's tested it out and tested it out and become an expert in it before he puts himself out there. Even when it's responding to questions or having a conversation. He doesn’t want to embarrass himself with his language and with his ability to communicate. So he's very quiet to start with, you know. And I think sometimes it is our job to put them into difficult situations, to push them out of their comfort zone a little bit because it's it can be easy to get yourself stuck in a rut where you do just go through the motions and and sit at home and go. I can't do that and I don't want to be part of that. And as a mum, you don't want to see that pain in your child. You don't want to see them fail, you don't want to see the looks on other people's faces, you don't want to hear the comments that they make when they do fail. So it's finding the balance and it's finding the way to do that. I mean, I was fortunate that at our local soccer club, when he was not a sportsman at all, every single season they would call me and be like, “is Thomas coming down? Is he going to be part of the crew?” And he coaches at that exact club now, you know, and we give back because. And I've taught that to him. I've said, you know, these people became your advocates as well and it's your job to go and help other kids that that might need you.

Kate: And I was going to say Alison that I think that what we've seen it Heads Together is that, when kids, let's say if we're talking about kids who've had strokes, for example, or just kids that have brain injuries, when they're given an opportunity to connect with other kids that have had brain injuries, that can be one of the most powerful ways for them to explore their identity because they get to do it through somebody else, which is less confronting than doing it with yourself. So they can see similarities with other people. They can hear other people sort of exploring what their interests are and exploring, you know, what they might do about it. And I think it's it's such a safe space for them to go, yeah, OK, well maybe I could try that because as Hailey said, like knowing what you want, which is such a big part of having an identity, it is incredibly challenging to even get that. Like we, we've got a young adults program that's been going for about 8 years now and it's all about, you know, it's called Ability and it's all about building your skills and your confidence and being part of a team. And what we've realised is that understanding, like identifying what you want and and knowing who you are, I mean, and obviously they are the biggest questions any of us ever answer in life. But when you've had to live in this system that isn't inclusive, that isn't empowering, that isn't equitable. How the hell are you supposed to do that?

Alison: I agree with you about finding, finding some, a group, but you know, I know that sometimes parents think, but I don't want my child to only be part of that group and that's what it is. It's about this isn't what and that's not what you're saying and that's not what my son did either. But it's also just saying it's safe. It's a safe space. You know when Thomas, my husband took Thomas to a tryout day with the Pararoos and he was 11 and he went over there and the NSW team was there and a lot of them were adults and he got asked to be part of that group. It was amazing. And he would go to three times a year and they would spend two or three days. And cause he was little, I had to drive in there each day. But the others all stayed overnight at the football headquarters in NSW. And he came, I said to him, you're going to miss your game this weekend. If you go out there, your local game. And he said, but they're my people, mum, they get me, you know. Yes. And he went there and there were range of adults ages there from, you know, 18, 19 all the way up to 30s. And they had lived experiences, they had been through school. They watched my son start high school, go through high school, face challenges, face NDIS, do all of these things and now graduate and he's tapped into. I've tapped into them. They've been a people for me as well where I've said, OK, this is happening for Tom right now, what do I do? Because they've been there, and it didn't mean that they were his only friends or they're his only support network. They were people that just became incredibly important to us. You know, and I think we underestimate sometimes as parents just how important that is for our children. You know, I remember when Thomas said that to me, I was like, this is about you. This isn't about me making sure I've ticked the boxes of for you. This is about you and your experiences and what life is looking like for you and what's going to make you happy and feel valued.

Kate: And doesn't that just go back to that, you know, we're here to talk about inclusive education. And I think part of what we're all saying is education is one piece of the big puzzle. And I like what you said, Alison. It's all about trust and relationships. And there's got to be this, this whole puzzle with the young person, the family, the school, the clinicians, the, you know, the local club, whatever they're into, they've all got to work together. Wouldn't it be amazing if every school had a lived experience representative that was part of their inclusion team every single school? I think it's critical that those that those people that that that people with disabilities need to be represented like they need to be doing the inclusion training work, because.

Alison: They absolutely do. They need to be doing the professional learning. They need to be changing the culture and the schools, for starters, and then you can make so much progress after that.

Kate: Hails, what would that have meant to you in your school sort of pathways if there had been somebody in leadership in the school setting that had a disability?

Hailey: Well, for starters, it probably would have stopped a lot of stupid, stupid questions being asked. But to be honest it would’ve made me feel far less isolated because you know, in all honestly just trying to explain the uphill battle of like you know the basics of having a brain injury to someone that in their education to become a teacher had zero classes on what a brain injury is and what a stroke is, how it affects children and that and just zero understandings. Having to explain those basics, it's exhausting.

Kate: It's almost like having an inclusion interpreter that has to be someone that's lived the experience. And I think one of the things that we're talking about, at Heads Together is the idea of professionalising that experience. So there's your own lived experience and I think you know, Hailey for me is an incredible example of this. It is your own lived experience and that's that brings a huge wealth of knowledge and experience. But because Hailey's now volunteered for, I don't know, 10-12 years working for us now is now the one doing the training. From our point of view, that's where you professionalise lived experience. Hailey is now trained and experienced in representing like a large number of.

Alison: That’s amazing. I wish the Department of Education just had these lived, experienced people that could go and not one we kind of need more than one.

Kate: No, thousands.

Alison: And that's the problem is that there's, you know, you get, you've got, you've got a consultant that's trying to consult to 28-32 schools in your region and it's impossible to connect with these guys and it's impossible for them to make an impact because they come in, they want to help you and then they're off and they've got to go somewhere else.

Hailey: And as Alison was saying earlier like, you know, the whole job hunt and it's an exhausting process. And to be honest, having to tick that box and say you have a disability and then be told, oh wait, no, you know, having purpose and being told that you're important and being told that you can do this job because you have that lived experience. It's a really fulfilling and really awesome feeling. Instead of being told no, you can't do that. No, not this job. No, we've already filled the quota for that.

Simone: So we have a long way to go, such a long way to go. What I'm hearing is very, you know, honest conversation and sharing around some of the significant challenges and barriers that we all wish weren't there. But they are. And I'm hearing Alison and and also Hailey and even in your role with Heads Together, Kate like just the exhaustion from constantly having to fight and have to advocate and work with systems that are broken. Hopefully through this work in childhood stroke, we can start to make a change. And I think there's lots more conversations that we need to have as a community. And I look forward to being able to have those conversations with you hopefully next year and and start to make some plans to make some bigger shifts. Because the system as you've all shared is broken and still not functioning and not serving the people it needs to serve like Hailey. And also to the parents and families out there.

If you were to just share one thing around what inclusion in the schools, what inclusive education means, is there one closing kind of word or sentence that you would say? Maybe it's a tip for parents or a childhood stroke survivor or even a tip for schools or teachers. Is there anything you would share?

Alison: I'd just like to say that I feel that, you know, everyone is valued and should be valued and should feel that purpose and and safety within the school system and should feel that when they get to the end of that road that they really well prepared and equipped to go and be active members in society, which is what they should be able to do and are entitled to do.

Hailey: For me, if I summed up in one word. It would probably be equality in every approach that you make towards an inclusive education. Teaching from a role model type model. Like you know, teaching respect and not fostering that bullying environment by kind of sort of explaining things by putting others down, just be respectful and treat everyone as an equal is really the top bit of advice that I can give.

Kate: I was going to say respect also. What I would say is it has to start with building and fostering the young person's voice and it has to be based on, you know, what's the can do, not the can't do. Or another great phrase I heard was what's strong, not what's wrong. I think that that's where inclusivity has to. It has to come from a place of positivity and and value and acceptance. And yeah. It's not one word, too many words. Yeah. But I think also just do better. Like, do better, everybody.

Simone: Yeah. Yeah, a lot of work to do. I want to thank you all, Kate, Alison, Hailey, for being so open and honest and vulnerable at times. I know it's a challenging topic and I think, you know, really grateful for the conversation. And yeah, I think we come back for Part 2 on this topic. But certainly we'll be doing more work, I think, in this space as we move forward in the project. And yeah, thank you so much for coming on the episode. You can see the resilience in that lived experience and just your expertise in this space. So really grateful. I know the community you're going to benefit from this episode.

Alison: Thank you so much.

Kate: Thanks, Simone.

Hailey: Thank you. Lovely to meet you, Alison.

Alison: Yeah, lovely to meet you guys.