#22 - Lived Experience Common Themes

In this episode, host Leisa Reichelt compiles into stories shared by six parents—Jennie, Marissa, Mark, Jane, Emma, and Lisa—who talk about their struggles and revelations while caring for children who struggle with school attendance. 

From early signs of stress and school-related anxiety to burnout, the episode highlights common themes like masking, parent blaming, and the importance of understanding nervous system responses. 

As parents shift their focus from compliance-based pressures to well-being, they share transformative journeys that led to better outcomes for their children and themselves. Tune in for heartfelt stories that underline the challenges and breakthroughs experienced by families navigating the School Can't journey.

00:48 School-Related Anxiety Starts Early and Is Often Missed

06:33 Masking at school, meltdowns at home

08:43 Burnout and Shutdown: When School Becomes Impossible

12:35 School Pressure and Systemic Pushback

18:07 Relief and Recovery Through Removing Pressure

22:35 Finding New Pathways and Rebuilding Autonomy

24:32 Whole Family Healing and Self-Discovery

27:12 More Information and Resources

Lived Experience Episodes:

Lisa McLean - https://www.buzzsprout.com/2447546/episodes/17421617

Mark Thompson - https://www.buzzsprout.com/2447546/episodes/17343389

Marissa Taylor - https://www.buzzsprout.com/2447546/episodes/17012454

Jennie Plummer - https://www.buzzsprout.com/2447546/episodes/16923948

Emma Gilmour - https://www.buzzsprout.com/2447546/episodes/16887755

Jane Nicholson - https://www.buzzsprout.com/2447546/episodes/16803563

Transcript

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 doing something a little different. This episode is going to bring together insights from six parents, Jennie, Marissa, Mark, Jane, Emma, and Lisa, all of whom have shared their School Can't lived experiences on our podcast. We are going to go through and highlight some of the common themes from these stories, which are moments of fear, frustration, love, insight, and eventually healing. So our first theme is something we've heard over and over. School-based stress starts early, even if for some families it wasn't obvious in those younger years. In retrospect, those tummy aches, difficulty separating, unusual friendship patterns are signs of stress that the child can't articulate. They are important, but they can be easy to miss. Let's start by hearing from Lisa.

Lisa McLean: 1:12

This is something I love to share with other parents just because, you know, if only we knew I think it was year one or two, she had a lot of tummy pain. We went down the path of constipation, food. I've always been sort of a holistic health type person, so I've always seen naturopaths and delved into things relating to health. But we didn't know about anxiety. I didn't understand how anxiety can affect the body, particularly the gut and the gut brain connection. I soon learned, but back then, she just found school hard. She found friendships hard. She did okay and got to school most of the time and she did have friends, but we could see that she struggled a bit with keeping friendships. She was a pretty happy child. And I suppose our first thing around the gut was food. So we removed sugars and preservatives and we went down all that route, which we know can also help the brain, but it wasn't actually addressing what I believe now was anxiety around school friendships. She's quite a sensitive, I'd say she's really an empath, so she really was not coping, I think with school environment, the sounds, the expectations, all of those things in primary school.

Leisa Reichelt: 2:31

This is Jennie talking about her daughter.

Jennie Plummer: 2:34

Primary school she seemed to sail through. She was a high achiever academically and in sport. She did a lot of representative sport for the school. She joined in all activities. She was on the debating team, the school student representative council. She did public speaking, which I couldn't imagine her doing that now. She got a major trophy every single year in primary school at presentation day at the end of the year, like academic awards.

Leisa Reichelt: 3:06

She didn't just cope, she smashed it.

Jennie Plummer: 3:07

Yeah, she did. So this came as an awful shock when we went to high school. But looking back, she did have social issues starting in year five. She kept swapping friends groups and they'd have fights. She couldn't understand what she was doing wrong. She said, I'm trying to be a good friend, but I don't know what I'm doing wrong. And she seemed to have a lot of friends, but no true, close, meaningful friends. She flitted around from group to group and in the end she made friends with children that didn't even attend that school, just children she met on the bus from other schools. Even then she swapped those friends around. So I thought she had heaps of friends, but she didn't really have any.

Leisa Reichelt: 3:52

And now let's hear from Emma

Emma: 3:54

Primary school for them was pretty good. They had, they seemed to have friends. Ushi changed friends she changed friends regularly, so she'd be, they'd tell me that she was a popular kid. So again, this is part of this high masking, like appearing to be like everybody else. Conforming. And very high perfectionism tendencies and very good at like reading what other kids are doing and what they look like and how to be like them. But she used to swap friends. She had one really good friend all the way from Kinder that they were like best friends until quite recently. But other than that, she'd just changed friends with her years. And then COVID happened and that for us was the sort of beginning of the end

Leisa Reichelt: 4:38

Now, Mark's daughter was able to share much more about her experience when she was quite young. Let's hear from Mark.

Mark Thompson: 4:45

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 going to 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: 6:20

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

Mark Thompson: 6:24

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, a complete week.

Leisa Reichelt: 6:33

Many of the parents who shared their School Can't experience, shared versions of a similar story, which was their child looked fine when they were at school. They were compliant, maybe even excelling, but at home things were different. They would collapse. There would be regular meltdowns or shutdowns. These were kids who were masking to try to make it work at school, and then they broke down in the safety of their own home. This is just one of the many reasons our kids can be so misunderstood. Let's hear from Marissa.

Marissa Taylor: 7:01

So when I would first say to the school, you know, this is how my child is, and they're like, it's normal. Every child goes through that it will settle down. They even said, you know, you'll start to see some behavioral changes at home. Well, they get very testy, very angry. And that's really because they're getting exhausted through the day. They just need time to settle down, and everything will be okay. That never happened. I had constant behavioral problems at home. They were perfect out in the community. They were perfect at school. So it made it really hard. If I went to the doctors or professionals to say, Hey, look, we are having behavioral problems at home, it was really always dismissed and just put down to me. And I was always given that advice of, you've just gotta be a firmer parent.

Leisa Reichelt: 7:45

And now let's hear from Emma

Emma: 7:47

So my youngest child is now being diagnosed with PDA autistic. She also has chronic fatigue. For her, everything is a safety thing. She goes through her world on high alert She was a hugely high masker. Everyone's like, oh, they're perfect. What are you talking about? And they'd moan about my other kid and I'd be like, what do you mean? He's fantastic at home because he's more of a fawner, more compliant, whereas, my younger one at home, she'd come home and the wheels would fall off.

Leisa Reichelt: 8:17

Now let's hear from Jane, who also had some pretty significant challenges at home.

Jane: 8:22

Our middle child, he had major School Can't would rip all his clothes off, hide under the bed. So we physically couldn't take him to school. He's autistic and would have 45 minute meltdowns every single day. And they were horrific like we're talking... breaking things, trashing rooms. We went through, I think about six televisions. yeah, it was a lot

Leisa Reichelt: 8:43

As time goes on, we can reach a point where school becomes impossible and our kids fall into burnout. These are kids who can't leave their bedrooms. They're literally in the dark with lights out and curtains drawn. Some for months, some for even longer. Let's hear from Jennie.

Jennie Plummer: 8:58

And then eventually she wouldn't leave her bedroom and she wouldn't have the blinds open. She had to stay in the dark. She'd only leave to go to the toilet. She wouldn't shower, she wouldn't clean her teeth and would only eat in her bedroom. And then her sleep patterns reversed. She was awake all night and asleep all day.

Leisa Reichelt: 9:20

Here's Lisa sharing their experience of burnout

Lisa McLean: 9:23

She still had trauma in her and unfortunately there was some kids there who did bully her. She even tells us now when she went to school. We thought she was at school. She came home, laid in her bed. She went into depressive states and, and this is the thing in between having her run away. We also had her at home in bed, in a dark room, not being able to move. So we went between those sorts of experiences for, for probably a year or more.

Leisa Reichelt: 9:54

And now let's hear from Emma and hear about their experience.

Emma: 9:58

22, July 22, which kind of around when we went into burnout. We played in and out of burnout for a bit, what would happen is you'd come into the bedroom and you'd say something to her and she'd goes, stop shouting at me. And you could see like all her senses were completely, everything was unsafe. Including us. The world was unsafe for her. She really started to deteriorate to the point where she became bedbound. So everyone's like, oh, she's depressed. And they were trying to you know, tell us oh, you need to get her out and you need to get her to do more. Um, and you believe people'cause you think, well these are the professionals. They know what they're doing. I mean, this is people in places that call themselves neuro affirming, diagnosing PDA kids. we now know is autistic burnout, chronic fatigue, and saying that they need to push through, do more, get out and get some exercise and some fresh air. We went to high school like Ushi was really full of hope. Like, I'm going to go to high school, it's going to be a different environment, it's going to be great. And so we get there and we get all the uniform, we're all ready to go. She gets there and the first week's, okay. And then as it deteriorates, deteriorates, deteriorates

Leisa Reichelt: 11:02

Yeah.

Emma: 11:02

going and she's back in bed. And then we are seeing people at the Royal Children's. We're seeing OTs, we're seeing all sorts of people. And we get referred to this place has been very helpful for a lot of autistic kids, in getting them back to school. But my understanding is that it's a university funded project and it's a research project. And the research project, the paradigm that it's trying to prove is that, if you do certain things, attendance will increase. And the problem that we have when we have a PDA autistic kid who is in burnout, Is that yes, anxiety's involved in it, but physically, someday she couldn't lift her head off the pillow because she'd go one day and then have to recover. She really wanted to do well. But it actually set us back because what happened towards the end as, as it was a six week program. I was 13 week program, I can't remember, but we couldn't make it through. And each week we got less and there was this, we'd get calls, you know, if you don't complete the program, it's not going to work. You know, if you don't attend, it's not going to work. Making us the problem, if it was a trying issue. I'm like, this is where we are. She's not sat at home like dancing around she's bedridden. And they just couldn't. And I was giving them all these books by Eliza Fricker and they were lapping them up. They were like, this is so interesting. And I'm thinking, am I the first person to be here with this? Maybe I was, I don't know. But, it seems strange. The people were good, but they were working on the wrong paradigm. The paradigm that they're working under is different to the paradigm that our children are living.

Leisa Reichelt: 12:35

And how are our schools responding? Well, it varies, but more often than not, parents told us that instead of support, they were met with pressure, compliance based strategies, legal letters, attendance targets. Here's Marissa.

Marissa Taylor: 12:47

So we really didn't even get much of a chance to put support in place. It was literally, you have to get your child to school by law. We have a wellness room here. Just drag them to school. Just get them to school. And we started doing that and it was getting really traumatic for everybody. And then the threats started like, if you don't do this, you are going to end up with a fine and a court order. My husband and I were going, like why, why we were being treated like we are criminals?

Leisa Reichelt: 13:19

Now let's hear from Jane,

Jane: 13:20

Yeah, so it was really, really hard. The advice from school was just be consistent. Just keep coming, keep going. And the, specialists were like, yep, school's the best place. We've gotta work on the accommodations. Make it work. It was just getting worse. And he was an absconder. So he actually made it off the school premises a couple of times and was nearly hit by a car one time. So it was pretty intense.

Leisa Reichelt: 13:45

Here's Lisa sharing their experience

Lisa McLean: 13:47

and I think particularly because the education department says, well, you have to do something. So, there was that external pressure on us, which I know many parents are going through. You have to get to school. So we did try third or fourth school where she had to actually go to school. But that again, was talking to the education department saying, if you want her to go to school, you need to find a school for us, and it has to be out of our area.

Leisa Reichelt: 14:12

Let's hear from Jennie.

Jennie Plummer: 14:14

you know what I was more worried about? The Department of Education being on my back'cause my brother has a child that struggled with School Can't since kindergarten. She was two years younger than my daughter and they were sent to court and I was waiting for that. I of course was worried about my daughter but that added pressure. It's like you have to get to school'cause I can't afford for this to happen, but it's really sad'cause that took time from me for my daughter with me worrying about keeping the school and Department of Education happy, which shouldn't have been. But in the end, my GP got a medical certificate and that covered her. And it was actually through listening to the people from School Can't that I started taking a step back and taking a completely different approach.

Leisa Reichelt: 15:08

As we listen to these School Can't lived experiences, it's almost impossible to overstate the toll that this takes on entire families. Many of the parents that you're hearing from have been advised that they were the problem, their parenting was the problem. They've blamed themselves and they felt guilt. They've second guessed everything. They felt isolated, stressed, and exhausted. Let's hear from Jennie.

Jennie Plummer: 15:30

And I was getting frustrated thinking, why can't you do this? But now I know she really was struggling and she actually came up to me and said, I think I've got ADHD like my brothers and'cause I didn't know the female presentation was going, no, you don't. Like, I, I wrongly thought that she was becoming lazy, I think, and she just didn't want to be in the high class and do the work involved. But now I know it was the opposite to that. She was trying. Trying and struggling.

Leisa Reichelt: 16:07

Let's hear from Mark.

Mark Thompson: 16:08

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: 16:54

And now let's hear from Emma

Emma: 16:56

We got referred there and there was just some really unhelpful things happened. There's a lot of parent blaming and there was a lot of not believing our experience and even our pediatrician who we ended up getting referred to, who was absolutely brilliant, very old school, and thank God we had her because she at least got us diagnosed with ADHD and referred us to get diagnosed with autism. But at the time, it was either that we weren't doing something right at home, or that she was being naughty. Well, we did all the reward charts and all that nonsense. And none of it worked. And what we were doing was damaging our relationship with our kids. We are feeling awful about ourselves. So it's like, no, we're not doing this anymore. So again, you have to do these things that people tell you to do and you're trying and you're trying and, and even like far down the line as we are now, you still get that little am I really doing this right or am I...

Leisa Reichelt: 17:45

Here's Marissa.

Marissa Taylor: 17:46

And I was always given that advice of, you've just gotta be a firmer parent. You've just gotta lay down the law. All that kind of really unhelpful advice, which you don't know is unhelpful at the time you just think, oh, okay, maybe I'm just too soft. Or you really start to believe that it is a you problem. It is not a bigger, wider problem.

Leisa Reichelt: 18:07

But there's a turning point in these stories, and it usually comes when the pressure to attend schools stops. This is when parents are learning about the role of the nervous system. When parents truly believe that kids will do well, if they can. This is when we can begin to let go of expectations and start to focus on our child's wellbeing. Then recovery can begin. Slowly but surely. Let's hear from Marissa.

Marissa Taylor: 18:30

And then I was trying to get ready for work'cause I'm the day worker and you know, and I, and of a sudden there was just me and my child on the floor, crying. I just got to a point and I said to myself, I can't do this like this. This is not healthy. You cannot tell me that this is a healthy way to live. I just stopped and I just, I apologized to my child, gave them a hug, put them back into bed. And I said, I am so sorry. You stay there, I'll work it out.

Leisa Reichelt: 19:02

Now let's hear from Jane,

Jane: 19:04

He did have a trauma response to school, so he did have PTSD from, that's how assaulted his senses were I quickly found out that we weren't going to be able to do anything that looked like school. And from the kind of conversations and researching I did, I found out about deschooling, which is the process of doing nothing in inverted commas. It's kind of like a holiday. Don't think about school, just heal from that experience and the trauma and the stress of dealing with the school system, Letting your nervous system reset. Cheese went from, having 45 minute meltdowns a day to none, like zero. I can't tell you the last time he had one. So that in itself, I think speaks volumes. We have a therapy swing in our lounge room and he would spend hours in that every day. It gave him like a big hug, just the nice pressure. And he was happy doing that. We read books, played games. I got into video games with him. Just whatever he wanted to do and enjoyed doing, I went with, through that process, you get to forget everything you know about school. Just throw it out the window, and look at your child afresh. What are their interests? How do they learn? What do they engage with? Are they more engaged in the morning than the afternoon? Is it inside? Is it outside? Is it going out in nature? So now we have a very Unschooled approach, which is. We go with his interests when he's interested. The more effort I put into a lesson or a project, more likely he is to go, nup, not for me. We take a strength-based approach. So we look at what he loves doing and work on that. So he is a history boffin. So we have got senior high school teacher who comes in and does tutoring, not with the goal of HSC or anything like that, but just someone that can engage with him on his level. So he's in the equivalent of Year Six now this woman is a senior, 11/12, getting kids ready for the HSC and he's teaching her things. The knowledge, and just the joy of him engaging what he loves. He's just, he's on cloud nine for the rest of the day because he's had all this time to speak for someone, engage with someone on a special interest level, which is fantastic for him. Yeah.

Leisa Reichelt: 21:25

Let's hear from Emma.

Emma: 21:26

What I learned from listening to people like Viv Dawes and Eliza Fricker, was that look, follow their passion, low demand, and follow the passion and let the passion lead. And what Viv talks about a lot in her work and her, her books have been really helpful to me, was this idea of, you know, letting that passion lead and it's been absolutely the right strategy, and even when I convince myself sometimes that it's not. You know, she is managing to do so much.

Leisa Reichelt: 21:54

Let's hear from Jennie.

Jennie Plummer: 21:55

The big thing was repeatedly to get her assessed and diagnosed, and they're saying she sounds like she does have either ADHD or Autism or both. And to help support her mentally, and to take all pressure off, allow her time away from school. Not to listen to family and not to be pressured by the school or society's expectations basically. And I'm so glad I listened to all those wonderful people with lived experience because here we are today doing quite well now.

Leisa Reichelt: 22:35

Once the nervous system settles, something incredible can happen. These young people can begin to reengage with life in their own way, on their own timeline, whether that's through home education, through their hobbies, through part-time work, or maybe TAFE with their family support, they can find paths that will work for them. Here's Lisa.

Lisa McLean: 22:54

So she lives on her own, supports herself doing amazing. And she's 19 now, and she's just started a course at TAFE To be a social worker. Which we just think is amazing because for her now, she's sort of healing and working. She's been seeing a holistic counselor. She understands now about journaling and meditation and all those things that can help. She now wants to do social work so she can help other young people who went through what she did. Its early days.

Leisa Reichelt: 23:26

And now let's hear from Emma

Emma: 23:29

This year she started ice skating, and she started studying Russian because she loves ice skating. So she's going to Victorian Languages School on Saturday morning to study Russian from nine til 12.20, which to me is an incredibly long time, but she comes out of it absolutely buzzing'cause relational safety. The teachers are really nice. She's passionate about the subject.That relational safety gives her energy,

Leisa Reichelt: 23:54

Let's hear from Mark.

Mark Thompson: 23:56

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: 24:32

This School Can't experience very often changes the entire family. Many of the parents you're hearing from have discovered their own neurodivergence along the way. They've learned a lot about themselves. They've changed how they live, how they work, how they parent, and certainly how they think about education. Let's hear from Marissa.

Marissa Taylor: 24:51

I bit the bullet and I started her In Tune With PDA program. I think I only got to that module four, and I was like, I paused and I was, I, I sat there and went, this is me. I'm actually learning about myself. Yes, it's my kids too, obviously, but the first thing that just came to me was I'm learning about myself here. And so then I went running to my psychologist and I was like, I think it's me too. And surprisingly at the same time, the psychologist I was seeing at the time, she had just done her training in autism assessments and she said to me, you know what? I can see it now. And we put the two and two together and then I went through the process of formal diagnosis with another psychologist.

Leisa Reichelt: 25:35

Here's Lisa.

Lisa McLean: 25:37

The reality is understanding ourselves better and why we behave certain ways or why we have certain expectations or why we hold stress the way we do, healing ourselves then allows us to be better parents. We needed to look inwards and really change things up for ourselves and really, you know, learn a bit about ourselves and, that allowed us then to be able to support her better. We do our best. And, you know, I say our daughter is definitely my biggest teacher in my life to date because, despite going through all of that, which I never wish on any child or parent. There's been a lot of growth and healing and a lot of understanding about ourselves through the process. So that's, that's the post-traumatic growth from the experience that we now have, which, you know, I feel very grateful that we can have that because she is healthy and well and coping now, which is amazing.

Leisa Reichelt: 26:37

Let's hear from Mark.

Mark Thompson: 26:38

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: 27:12

Well, huge thanks to Jennie, Marissa, Mark, Jane, Emma, and Lisa who all shared their School Can't lived experience with us on our podcast. I have put links to their full episodes in the episode notes if you would like to hear more from them. And if you are inspired to share your School Can't lived experience, we would love to hear from you. It's an easy process and anyone can do it. Just drop me an email to schoolcantpodcast@gmail.com. If you have found this podcast helpful, please take a moment to share, subscribe, maybe even give us a rating or a review. It really does help get this podcast in front of even more people who have School Can't kids, and haven't found our community and the information we can share. If you are a parent or carer in Australia and you are feeling distressed, 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 so much for listening, and we will talk again soon. Take care.