#18 - Lived Experience with Mark Thompson

This week we return to our Lived Experience series and host Leisa Reichelt is joined by Mark Thompson, a father of two daughters from the south coast of New South Wales. 

Mark shares the struggles and triumphs of raising his autistic daughter, codename Bluey, as she faces challenges with attending school. From the daycare where Bluey thrived, to the increasing difficulties in preschool and beyond, Mark shares their journey through the education system. 

He discusses their eventual decision to home educate,  the family stresses, and the myriad of strategies they employed to support Bluey. 

Mark emphasizes trusting the gut instincts of both parents and children and the importance of finding a supportive community. 

00:00 Welcome 

00:28 Introducing Mark Thompson and His Family

01:37 Early School Challenges with Bluey

04:09 Navigating Autism Diagnosis and School Supports

07:13 Struggles with School and Transition to Homeschooling

15:32 Homeschooling Journey and Personal Reflections

19:51 The Importance of Community and Support

22:09 Closing Thoughts and Resources

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 struggling to attend school can be a stressful and isolating experience, but you are not alone. Thousands of parents across Australia and many more around the world face similar challenges and experiences every day. Today we are returning to our Lived Experience series and I'm joined by Mark Thompson. Mark is a dad to two daughters, and today he's gonna share some of the story of his family and their experience of School Can't. so unfortunately, the audio quality on this interview isn't fantastic, so my apologies for that. But hopefully you'll still be able to really enjoy hearing from Mark. Mark, thank you so much for joining us to share your story on our podcast today. Let's get started by getting to know you and your family a little bit, tell us a little bit about you and the family and where you've come from.

Mark Thompson: 1:02

So we live on the far south coast of New South Wales. There's four of us. There's myself, my wife, Jo, and we've got two beautiful daughters. One's ten, one's three, and I originally moved to Australia about 15, 16 years ago from the UK. For work. I've worked in the mental health sector for the last 15 years and lived experience space.

Leisa Reichelt: 1:21

fantastic. Really appreciate you're our, first dad to come on and share their perspective of the School Can't lived experience. Let's start from the beginning then, shall we? What are we calling your two daughters today?

Mark Thompson: 1:33

My two daughters, I will just call in Australia Bluey and Bingo

Leisa Reichelt: 1:36

All right. let's start at, the beginning of where the School Can't story starts, from your perspective with Bluey.

Mark Thompson: 1:43

So when she used to go to daycare, she absolutely loved it because it was freeform, she could do what she liked. She is a really curious kid and just liked to do her own thing in her own time, her own space and was wonderful. So you'd sometimes go to pick her up and she'd be there going, I don't want to leave I just wanna stay and have more fun. And then, when we got to preschool, there was a few more rules. And she came back to us and said, i'm not quite sure I feel comfortable here because they tell me what to do all the time, and I don't like that. And so as a first time parent, you kind of go away, you think about that and you kind of go, well, your kids are gonna show some resistance to certain things when they're being asked to do things they don't want to do. You try and navigate that as best you can and you have a chat with the preschool and the teachers and the people who have seen it before. And then when we got to school, that really kind of ramped up. Everything became difficult. Demands were hard for her, the more she struggled emotionally that led to really big sensory issues So even getting dressed in the mornings became incredibly difficult. Mornings, really could take hours and hours doing stuff like ironing the soles of shoes and making sure there was not a single crease. It just became very, very difficult to the point where, school attendance ground to a complete halt. Internally you're kind of going, there's something not quite right here you've got all the expectations. Your children have to go to school, they have to get an education, they have to learn, which is all correct, but, it didn't fit for us and it didn't fit for her..

Leisa Reichelt: 3:18

And so that was in kindy that it all just kind of fell apart completely.

Mark Thompson: 3:23

Yeah. I mean, kindy wasn't too bad in that, but I'm thinking back now and she's ten, and even going back I don't think she ever did a complete week. And I'm looking back over that time and just thinking to myself, am I not doing this right? Am I not approaching this the right way?

Leisa Reichelt: 3:38

How was the school in those really early days of her starting school and trying to attend?

Mark Thompson: 3:43

Luckily she really liked her teacher. And so, you know, on the days we could get her there the teacher would often come to the office, and we'd try and do a handover and sometimes it would go well but most of the time it didn't. Yeah. The more resistance there was the tougher it got to have honest conversations with them on what was happening. So that's when you know, as a parent, you turn and go, what, what do we need to do here? So you seek the advice of professionals. And get diagnostics. It turns out she was autistic and she is autistic should I say, and, you know, that allowed us to research how to support her. We were incredibly lucky that we could afford to go private. looking at the public waiting list and it would've been 2, 3, 4 years wait list, especially when you live in a regional area, I remember taking the day off work and ringing every single pediatrician from Sydney to Canberra. Even the private ones had massive waiting lists. And we were just lucky that we found a pediatrician, in Canberra. A practice had just taken on two new pediatricians, so we were able to get an appointment within two or three weeks.

Leisa Reichelt: 4:42

Wow.

Mark Thompson: 4:42

it was actually pretty lucky in the end.

Leisa Reichelt: 4:44

Luck off the back of a lot of hard work by the sounds of it.

Mark Thompson: 4:47

It was, but it's just what, it's just what you do, right? To support your kid. When you've got that diagnosis, you then try and go back to the school and go, well, we've now got this diagnosis. What supports are available? Then there's confusion around, what she's entitled to, and, conversations around funding. Is the funding tied to the school? Is it tied to the child? You're trying to support your own mental health, you're trying to, you know. Work, you're trying to look after the family, all of that stuff. In the end, you're trying to make sense of funding models and stuff like that. Go and advocate for yourself to get your daughter more support.

Leisa Reichelt: 5:22

So you talked a little bit about some of the personal stresses and pressures at home. If you look back to those early days when Bluey first got her autism diagnosis. How was home life how are things going at home? On top of all the school pressure.

Mark Thompson: 5:37

Her sleep was just always not great, and so we were always tired and we always felt like we were fighting everything. For me I was trying to work 40 hours a week and I was also trying to support my wife who's going through her own stuff and trying to support my little girl too. You've got that societal expectations whereby I was just like, I've just got to fix this somehow.. And so in my head, I'm going, is it about getting her to school or is it about kind of, you know, that wellbeing for, for us all? And so trying to balance what I think and what I feel versus what I'm being to told I have to do. Trying to manage it all was just so difficult. I think for me, you feel a level of shame of not being able to, to, to manage everyone's wellness and support everyone in the way you want to. You have, how do I emotionally support, how do I intellectually support, how do I financially support, you still wanna try and find, you still wanna try and find joy in life as well. You don't want life to become this rollercoaster of just trying to manage things none of that seemed to be working. There was anything that a hundred percent. So yeah, just that internal going, what can I do differently or what can I do more? The answer was always work harder, you know, so, yeah.

Leisa Reichelt: 6:55

harder, try harder, push harder. Yeah. Yeah, yeah. So you had the diagnosis. You are trying to get that additional support at school. How did that go? What was the next step in that journey?

Mark Thompson: 7:13

Oh, eventually there was an incident at the school, where someone actually breached a boundary with her and I was present for it and after I witnessed this I made a decision there and then that she's not going back to this place that is causing her harm. We got a school counselor involved who, thankfully when you live in a small community, you know each other. And he was phenomenal. He worked with us and we managed to register for a school out of our area, which is 50 kilometers away. And that school had a support unit. And when she started to go there, they were saying all the right things and doing all the right things. And met her with where she was at. And the principal did an amazing intake. Her teacher and head of that department was phenomenal and engaged her with her interests, Minecraft, dinosaurs, Pokemon, all that kind of stuff. And she learned by surrounding herself with things she loves. And, yeah. But that, that was, that was really good.

Leisa Reichelt: 8:20

Well, that's 50 Ks away. She was having to hop up and get in the car and drive to school,

Mark Thompson: 8:25

I worked in that same town and the plan was for me to get her to school on time and then go to work myself, and so that never happened, you know, and I was constantly late for work and I was constantly having to take time off. And that familiar story of how do you work a full-time job? How do you bring in enough income to, pay the mortgage, pay the bills, and so it just becomes this never ending thing. All your conversations between, you and your partner become logistics about who's gonna do what. And when you're tired, it then becomes, but I did do this yesterday. It's not about blame, but everyone feels under the pump and no one feels like they're getting a break. And the terrible thing about it is..... it's no one in our immediate family's fault. Do you know what I mean?

Leisa Reichelt: 9:09

Everyone's trying the hardest, but everyone feels like absolute crap. Yeah. And it is, it's very stressful with work, isn't it? Because you never know what the day's going to bring until it's happening. And so it's like you can't plan, people can't plan around you just, yeah. It's, it's miserable, isn't it? To have to go, I'm really sorry. I'm gonna be at least an hour late or two hours late, or I won't be in at all.

Mark Thompson: 9:35

That's exactly what it was. And so, yeah, I'd be there driving to work and I'd have my, you know, my personal phone and my work phone. And then constantly having to pull over and just quickly text, oh, I'm gonna be late for this appointment, or, can you rearrange this please? And in your head, you're going. Right, when we get there, I'll have like a 15 minute buffer to do the transition. Then, the meltdown would happen outside the school gates. And that would be, I'm not gonna get there for the next meeting either. Yeah.

Leisa Reichelt: 10:01

how important it is for you to stay calm, but it's also impossible to stay calm'cause you're so stressed out about all of the havoc that you're causing everywhere else as well. Yeah, it's very, very difficult, isn't it?

Mark Thompson: 10:13

You've gotta look after yourself. You've gotta put your own oxygen mask on before you put anyone else's on. And it's so difficult to get anyone to understand. And you get all that advice from people who haven't been through it.. And you just need to be harder. You just need to take their games away. You need to make home uncomfortable. You need like, all of that stuff, which, internally, made me go, oh no, I can't, I can't do any of that,

Leisa Reichelt: 10:37

where were you getting that advice from?

Mark Thompson: 10:39

You get it from friends, you get it from relatives, you get it from all over. And again, it, it brings back to that real, what are my core values in this? How do I see this? I can't ever imagine, being unable to attend a place which doesn't feel safe for them. It's an odd point of view, to say, if you just make your kid more miserable here, they'll want to go to the slightly less miserable place. That doesn't make sense to me

Leisa Reichelt: 11:01

Do you think your personal history help to inform that? Because I think for a lot of people there is kind of an inherent logic of take the fun things away and then they'll want to go to the place that must be relatively more fun.

Mark Thompson: 11:13

Yeah you're right, it did. Having a personal history of mental health challenges and mental health recovery. I was unwell for a very, very long time. It was by finding the thing that meant something to me that got me out of that, that, that taught me that there's a life beyond what I'm experiencing right now. I was housebound and I was agrophobic. And I remember sitting down one day and going, well, I need something to focus on. So I started a blog,'cause blogs were really popular back in the day. And and that eventually became a home business. Having something I enjoyed, I loved, gave me a reason and then I just built momentum from there. And I know, my experience is completely different to my daughters and different to everyone else's, but there are building blocks you can use in different types of recovery, and is what I always worked on with her is how do we connect, enjoy things together and what is it about the world that you find interesting and how do we harness that,

Leisa Reichelt: 12:06

So there were lots of things about this school that ticked a lot of boxes, and yet it wasn't really working. Can you talk to why it didn't work out the way that you hoped do you have any insight into that?

Mark Thompson: 12:22

the people there, they are well-meaning, great at their jobs and they are passionate. They can't create the environment that is gonna stop my daughter's nervous system, for lack of a better term, freaking out, you know? Whenever I picked my daughter up, she'd say, yeah, today was a great day and I did this and I did that with this person and what, and then the next morning it would be that she was just so tired that any demand would just be impossible, you know? So one day at school would lead to two days of burnout. It was just too big for her.

Leisa Reichelt: 12:59

So where was she at school-wise? By the time that you came to terms of the fact that it wasn't really working out?

Mark Thompson: 13:08

Yeah, I think we were pretty aware after the first 12 months to be quite honest, and, you do that thing, you do the try and push through thing because you see joy there. And so it's case, well if we can just iron this out, if we can just iron that out every step of the way, the school will like, tell us what we need to do, you know, there always open to communication everything, but it just, we just couldn't get what we needed to get in order to..., We couldn't make the environment what it needed to be, unfortunately.

Leisa Reichelt: 13:38

What are some of the things that you tried?'cause I'm very familiar with this carousel of like, well, what if we try this? Oh, we'll try this and that might work. I just need to get the recipe right and then it'll be okay. And you just go round and round and round. What are some of the things that you tried

Mark Thompson: 13:50

so, she really struggles with temperature changes and therefore going out with the sensory stuff, she can't wear jumpers and things like that. So it's case of, staying inside at break times or taking as many breaks as she likes, and always having a lunch on her desk so she can eat when she wanted, in class whenever she wanted if I managed to get her at 10 o'clock in the morning, I could take her straight to class and that would be all good. They had extra movement stuff there, like, more sport and they involved her, all the kids in that class had pets. They gotta play network Minecraft. When they did cooking classes and life skills and things like that, it was a case of,'Right, what's your favorite meal in the world? Let's make that.' There was every single thing that we possibly could have done. One of the things I think is really important is to give positive feedback I sent an email to the, to the education department, just praising the school and their kind of neuro affirming attitudes, and the things they'd tried and they, and they had tried. So it was really, it was a shame for everyone when it hadn't worked out

Leisa Reichelt: 14:56

yeah.

Mark Thompson: 14:56

Amazing school for a really small regional town.

Leisa Reichelt: 15:00

I can relate to that. My son in his most recent attempt at school went to a fantastic school which if he'd been able to get into a couple of years earlier, would've probably solved all the problems. But by the time he got there, he was just too burned out. Finding that school was like finding a little utopia for neurodivergent kids. There are amazing places out there, but, even then, it doesn't always work. Okay. So you got to the point where you're like, this is not working. I'm doing a lot of driving and not getting a lot of school or work done. What next?

Mark Thompson: 15:32

Yeah, so homeschooling was the only option really left for us. And we're going through that process at the moment of going through the registration, and everything. But really interesting. This week I did some work with her around grammar, capital letter, commas, full stops. And we, we, we put some computer skills on that. So we put everything into a spreadsheet around one of her hobbies. She actually came up to me the next day and said to me, can we do some more work on that project today? And that's never happened before. And it was, it was really, really, fascinating and phenomenal for, us. But it was great that, she felt in control that she was taken on the lesson, like, when she made a mistake with spelling or grammar or whatever. She'd go, oh yeah, okay. I need to, I need to remember that. And so became a little bit of a fun game to make a mistake, just the two of us sat there and that's the first ever time she's asked to do more work, which was just phenomenal.

Leisa Reichelt: 16:24

Wow.

Mark Thompson: 16:25

That's what we're doing at the moment, When we talk about how to interact in the world now, she will want us to say, can that be part of my education? We say, yep. What are we gonna do to make that, what are you gonna learn from that? What are you gonna take from that? Things like when she doesn't sleep a few weeks ago, there's a meteor shower at two or three o'clock in the morning and she wasn't asleep. So lets learn science. And so it was, it's, it's really nice. Wrap yourself in a blanket and we're lucky where we live and, you know, we can drive down to the beach get a blanket and we can lie there and watch the meteors and the stars so yeah, we can do that now and that's exactly what she needs. I left my last job in November. I'd been in for seven years. And so I've set myself up in self employment.. I've worked full time, you know, the nine to five for the last 20 odd years. Getting out of the headspace of doing that is really difficult because you have these traditional, societal expectations. To dial that back, and realize that I might need to do two hours of work. The kids are in bed or to think that our weekends may not be traditional weekends, And just completely flipping everything on it head. And even the logistical challenges with that is like, okay, we need shared family calendar now complicated. And so for me, I trying to, to find enough work as well is difficult. All that around, her needs and the family's needs. Actually, it's not an individual problem we've never viewed it that way. How do we make our family situation work, with her words, big feelings? When she got the diagnosis we asked her what she wanted to refer to as, and she referred to it as her big feelings. that's what we'll call it. So how do we work with big feelings in our family?

Leisa Reichelt: 18:10

Home education. Once you decided that that's what the pathway forward looked like, what's been your approach to how you tackle that?

Mark Thompson: 18:21

Our approach has been interest led. What is she interested in? You have to get the essentials in, right? So things like learning to read and write. We are led by her. One of the things I've said quite frequently is in this whole journey, you have to trust your gut. And think I've learned more than anything, I have to trust her gut because she's taught us so much about different ways of thinking, different ways being, and so if she tells us now something's too much. We know she's right, she's been right since she was knee high. And so therefore, just listening to her and accepting her, she's got a really good handle of how she's feeling and what's happening for her, both in her mind and body. So just listening to that is really important.

Leisa Reichelt: 19:04

Mark, we talked about the fact that you're our first dad to come and share a story and, share your lived experience with us. I wonder if you have any thoughts on the male perspective, the father's perspective of the School Can't experience? You don't have to speak on behalf of your entire gender, obviously.

Mark Thompson: 19:24

It's really hard because for me, the whole working 40 hours a week thing was such a big thing to let go of all the societal pressures and expectations to do all the things, be strong, to, you know, all of that stuff was just, it, it weighed heavy on me. Even though in my own head, and I'm working in mental health and having my own stuff, I know more than anyone that's not the case. You don't have to, it's okay to speak and reach out. In those moments, I just couldn't do any of that. One of the things I'd try and get through to, to dads and men, I guess is, find your tribe, find people you can talk to and relate to. I remember after school holiday I thought the two weeks had been really restorative for us as a family. And then first day going back to school we had a big meltdown in the morning and school didn't happen. I just went onto the School Can't forums, on Facebook just put in this throwaway comment about, you know, you think you, you think you're replenished and then, day one back and like its like you've had no time at all. And I dunno, there was just this overwhelming sense of, yeah, we get you and we understand, do you need anything, do you want to talk. For me it was one of those moments where I kind of, oh yeah, people do actually get this. It was overwhelming the amount of people willing to talk, listen and go on that journey with you.

Leisa Reichelt: 20:41

Yeah, I think that for me that was what the School Can't Facebook group was. Going from feeling like the only parent on the planet who can't get their child to go to school. And then joining that group and realizing that there were just so many other people who had exactly the same experience and have, had all the same difficulties and frustrations and challenges. It doesn't make anything any easier, but it just makes you feel less lonely and less shameful about things, doesn't it?

Mark Thompson: 21:08

Exactly what I found when I went there and yeah, when I, I put the message on there, that's exactly what I found. Just people who got it. People understood, people who weren't judgmental, people who didn't offer unsolicited advice. They were just there.

Leisa Reichelt: 21:23

Mark, if you could say one thing to folks who are on their School Can't journey now that you wish you knew earlier or a resource that's been helpful for you, what would you like people to know about.

Mark Thompson: 21:37

The thing I was saying earlier about trusting their gut, trust your School Can't kid. They know, and work with them, work alongside them.'Cause when you do, you'll find levels of connection you never kind of expected. And it's a journey you get to go on together. Because you're here now doesn't mean that you're always gonna be here. And eventually the journey will change and the scenery will become prettier and all that kind of stuff. And try and find the glimmer where you can, I suppose

Leisa Reichelt: 22:01

Lovely. That's a beautiful place to close. Thank you so much for sharing your journey. I really appreciate it.

Mark Thompson: 22:06

My pleasure, thank you so much.

Leisa Reichelt: 22:09

I hope you enjoyed hearing about Mark and his family's journey, and that takeaway of trusting the gut of our School Can't kid really resonates with you as well. There's links in the episode notes to find out more about School Can't Australia and all of their resources. If you found this podcast helpful, please take a moment to share, subscribe, maybe even give us a rating or a review. It really, really makes a huge difference in helping us get the podcast in front of people with School Can't kids who haven't found the community yet. If you've got feedback for us or you'd like to share your own School Can't lived experience, please drop an email to schoolcantpodcast@gmail.com. And 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. A link with the number to call is in the episode notes. Thank you again for listening, and we will talk again soon. Take care.