RECORDED Wed 18 Dec 2024
SUMMARY KEYWORDS: Tourette Syndrome, complex health conditions, school connections, involuntary tics, social isolation, mental health, coprolalia, copropraxia, ADHD, OCD, autism, mainstream education, teacher training, alternative schools, Disability Standards for Education.
SPEAKERS: Megan Gilmour, Mandy Maysey
Megan Gilmour 00:00
This episode is proudly brought to you by the TPG Telecom Foundation dedicated to creating opportunities to improve the health, wellbeing and education of Australian communities in need.
Hi, I’m Megan Gilmour, MissingSchool, Co-founder and CEO, and this is Live & Learn. This is the podcast that unearths insights at the intersection of health and education, building a powerful alliance to keep kids with complex health conditions connected to school from anywhere. The podcast is recorded on Ngunnawal land, and we acknowledge and pay respect to the traditional owners of this land and the land on which you’re listening.
Megan Gilmour 00:48
Welcome to our weekly webcast, a place to zero in on the interplay between health and education and to amplify the voices of those supporting school students to navigate their educational journeys despite complex health challenges.
And today on Live & Learn, we have Mandy Maysey with us. Mandy is the president of the Tourette Syndrome Association Australia, TSAA. She became involved with the TSAA seven years ago when her three children began showing signs of Tourette Syndrome. Mandy also works as a teacher aid in Special Education. Welcome Mandy. We’re so excited to have you on Live & Learn today.
Mandy Maysey 01:32
Thank you for having me. I’m looking forward to it.
Megan Gilmour 01:34
Yes, so Mandy, today we are here to talk about supporting school connections for students with complex medical or mental health conditions. Let’s kick right off with a really important question.
Tell us how Tourette Syndrome impacts kids and why it’s something every Australian needs to know and care about.
Mandy Maysey 01:59
Oh, big question, one of the main things facing people with Tourette’s is that we grow up being told that, you know, keep your hands to yourself, keep your feet to yourself, use kind words. You’re in control of what you say. You’re in control of what you do. And this is a rhetoric that we give kids growing up, and when they get into school, it’s something that is drilled into them.
But people with Tourette’s are at a disadvantage. They are nobbled very much by the fact that they can’t always control their hands and their feet and what comes out of their mouth. They cannot just not say that, just not do that.
I think there’s a bit of an internalised shame, especially in older people with Tourette’s, the fact that they feel like they should be able to hold it, and they should be able to suppress it, but they can’t. And it’s just the basic misunderstanding of everybody that you come across when you have Tourette’s, that people seem to think that you should be able to control it, that you can control it, that it’s deliberate.
And I know definitely in school experience with my own children, that a lot of teachers and school staff don’t believe that it is involuntary. They absolutely believe that it is a learnt behavior.
Megan Gilmour 03:24
Yes, so this is something that we all need to understand much more about, and that’s why you’re here today with us. And thank you so much for joining us and for the work that you’re doing to shine a light on this issue.
So, you’ve touched on it a little bit there, Mandy, that many people probably assume things about Tourette’s. What’s the million dollar question you get from parents or loved ones when their child experiences Tourette’s?
Mandy Maysey 03:57
The biggest question is, will it get better? Will it go away? Will my life ever be the same again? Will my kid ever achieve anything in life. And I know that personally, that was a big question I asked myself, you know, are my children ever going to achieve?
Are they going to be able to – what’s the point of going to school – sometimes was my thought, what is the point of going to school and fighting this system, which is so hell bent on ostracising my children, when I can’t even guarantee they’re going to get a job when they leave school. And it feels very, very negative.
There’s this massive grieving period that you go through when your child is diagnosed with something like that, a lot of conditions, a lot of neuro divergence and things like that. There is that whole pity party that you have.
And my answer is, yes, it does get better. It doesn’t, you know, it’s not going to go away. Tourette’s is not curable. You don’t grow out of it. You get better at managing it.
But yes, absolutely the question is, you know, will my child ever get a job? Will they have a fulfilling life? Will they ever get married? Will they ever have children? Will they ever learn to drive a car? And those are all things that you feel like it’s the end of the world. And it’s really not.
Megan Gilmour 05:31
Thank you for sharing that. Because across these calls that we do, no matter what condition or diseases that it is, that is typically the answer I get to that question which tells us something really important here, which is everybody’s sensitivity or care or concern, is about the person, and what’s going to happen to the person? Are they going to be able to live a good life? And so, I just want to pause and put that there.
Mandy Maysey 06:19
That I want people in general to know?
Megan Gilmour 06:23
Well people, families, loved ones of children who are diagnosed with Tourette’s to know.
Mandy Maysey 06:34
Okay, Tourette’s is a debilitating condition. It can be very socially isolating, and it does get better. You get a thicker skin. You have to learn to just ignore people. That sounds terrible, but when I go out back in public, I do not notice the stares.
I was out with two of mine today, my oldest and my youngest, and they’ve both got Tourette’s, and they’re both very loud and they’re both very ticky. And it occurred to me that I’m just, you know, I was just sat there, we’re having coffee, and I’m just ignoring the fact that there are snorts and grunts and shouts and silly noises, silly movements I say silly, you know what I mean? And it’s background noise for me. For a lot of people, it’s confronting and it’s very ‘Oh, what is that?’ So, it does very much become just part and parcel of your everyday life.
But initially, when you first get that diagnosis, when it first appears in your life, it seems like everybody’s staring, everybody’s watching. And, you know, you feel like you’re living life under a microscope. And a lot of people, you get the sympathetic people – my kids hate it. They go, ‘mum, that person’s looking at me like I’m broken’, or, you know, ‘they’re looking at me like you know, they want to cry’, and I just have to ignore them. I understand people are thoughtful and empathetic, but sometimes you just want to get on with your life. Just want to get on with your day.
Megan Gilmour 08:06
Yes, you said that too in the last in response to the last question, which was that that it doesn’t go away, but that you can learn to live better with it and so I reckon we’re going to get into some of that a bit a bit later in the conversation. I think that’s a super cool key here.
So, we possibly know a bit about this answer based on what you’ve said, but Mandy, we’d love to know what brought you into the world of Tourette’s,
Mandy Maysey 08:45
So, my youngest is just coming at 14, and right the way from very small, you know, early toddler years, they were wriggly. They were constantly sensory and grunting and sniffing and blinking and things like that. And we realised – sorry interruption there.
So, yes, so it became very apparent there was something going on. And it didn’t even occur to me that it was Tourette’s. But it was interesting, because Trix is my youngest, and yet they were the first one that we noticed actually had these oddities, I guess you’d call them.
And so, we went to see a pediatrician, and I’m thinking, oh, you know, autism or something. And, and then the pediatrician that was there, she said, ‘Oh yeah, I’ve, I have seen this. And I’m, you know, this is Tourette’s’. And I was just like, “No, I’ve seen that on television, and it’s not Tourette’s – my child definitely doesn’t…”
Anyway, by the time I got home from the pediatrician appointment, I had googled the Tourette Syndrome Association. I had joined the Tourette Syndrome Association within 24 hours because “help”. There’s not a lot of help that they give you. They tell you your child has Tourette’s, and they go bye, I see you look it up on the internet.
And so, they were like, they were like a nodding dog. There was a grunting and a sniffing and a head shaking. And it was, it was really quite substantial. And once we knew what we were looking at with Trix, and we knew that it was Tourette’s. We certainly became aware that some of Connor my oldest, he’s 30 now, but some of his behaviors, as we would have put it, were mild tics, possibly Tourette’s and then in the not too distant, …Trix, can you not… sorry.
Megan Gilmour 10:52
That’s okay
Mandy Maysey 10:53
Where was I so, yes, so Connor had a severe mental health episode, and he was hospitalised, and the stress and anxiety and everything around having the mental health condition really compounded everything, and he started ticking more substantially.
And then the more you’re around people that tic, the more you tic yourself and so Connor then became much more noticeable in his tics. And then in a very short period of time, so I’m talking sort of over a 12-month period, then the middle one started ticking as well, and then within sort of two years of the original diagnosis of Tourette’s in Trix, all three of them had full blown Tourette’s with all of the coprolalia, the copropraxia. So coprolalia is the socially inappropriate words and phrases. Copropraxia is obscene gestures. And then you have coprographia, which is writing, yeah, so.
So, all three of them have that as well as they all three of them have ADHD, OCD. It’s very rare to get Tourette Syndrome without OCD, yeah. So, they have OCD and all three of them are autistic as well. So, they’ve, we’ve got a lot of the comorbids going on. So, in a very short amount of time, our lives changed from one child with Tourette’s to three children with Tourette’s, which was, which was quite….
Megan Gilmour 12:37
Was getting this first insight that you mentioned here, helpful to you to actually now understand your lived experience and what was happening. So, you went from the GP and Googled and found help. Was that a moment where you finally had the feeling of some clarity and a way forward?
Mandy Maysey 13:04
Being able to talk to other people. Because the one thing that Tourette Syndrome Association did was put me in touch with other families that are going through exactly what we were going through, and to suddenly be able to have a conversation with somebody and then say, ‘Oh, and this happened, and that happened, and somebody reacted like this, and then that,’ and suddenly you’re like, “Oh my goodness, this is a Tourette’s thing!”
It just helped in so many ways to be able to understand that we were not alone. And I think that’s really important to understand that, that you’re not alone and you’re not the only person that’s going through something.
So, we do get a lot of people that really feel like theirs is the worst, or theirs is it’s the end of the world, and suddenly you become aware of all these other people that are going through exactly the same struggles. It kind of alleviates that pressure, I think.
Megan Gilmour 14:01
Yes, and you beat me to the punch line there, because I was just about to say you are not alone. Because that is the other thing that we hear on these calls, and it’s certainly our experience in our organisation as well.
This lived experience coalition with others, where it’s not only just about getting information and resources where they’re available, but it’s actually being able to map and understand your own experience with a lot more agency and empowerment and be able to be with people who you don’t have to explain it to.
Mandy Maysey 14:44
Yes, they get where you’re coming from; wherever you wherever you start in a conversation they know exactly where you’re coming from. Yes, absolutely.
Megan Gilmour 14:51
Could you just give us a very brief insight into – you talk about tics – so could you tell us what that means in the Tourette’s world?
Mandy Maysey 15:01
So, Tourette’s is characterised, it’s not the only characteristic, but generally characterised with vocal and motor tics. So vocal tics can be something as simple as sniffing or grunting, clearing your throat or humming, whistling, little things like that.
And then it can become more complicated. So those would be simple vocal tics, more complex vocal tics are words, phrases, and then we go into the copros – so coprolalia, so the socially inappropriate phrases, sayings, racism, sexually explicit things like that. So that’s your vocal tics.
Motor tics tend to be scrunching up your face, blinking, little head nod, shakes, things like that. So those have been mild, more simple tics.
And then, obviously, copropraxia, which is obscene gestures or inappropriate touching of yourself or others. And then there is the other one, which is quite a little bit more rare, I guess, which is the coprographia, which is the writing, sorry… Trix …. So, it was a little bit more uncommon, and that is typing, texting, writing, socially inappropriate things. So yeah, so drawing – walking up to a chalkboard and drawing a penis on it or something like that.
So that would be your vocal and your motor. Then there are also mental tics. So that’s unwanted images that you can’t get out of your head, that you would repeat over and over, or obtrusive thoughts. So yes, self-harm, thoughts of self-harm, and things like that. And it’s odd, because it’s not a mental health crisis. If somebody with Tourette’s is having thoughts of self-harm, often it is literally just a mental tic that doesn’t want to go away.
Megan Gilmour 17:29
Yeah, and it’s a repetition in nature, as you’ve said, which is that OCD or looping. So, knowing all of that, and thank you for such a rich explanation, and being able to give us that understanding of the space we need to hold for Tourette’s.
So, Mandy, knowing all that you know, which is a lot, what’s your biggest hope for kids with Tourette’s and then biggest hope for them and their families and loved ones when navigating it,
Mandy Maysey 17:59
Acceptance and understanding. That’s all, all we really need and want to be able to thrive in society, acceptance and understanding.
Megan Gilmour 18:12
Yes, so simple, isn’t it, really, but yes,
Mandy Maysey 18:22
You would think [laughter]
Megan Gilmour 18:27
[Laughter] I think it goes back to what we said a few moments ago about holding space and the fact that in our professional lives, in our family lives, in our socialising, this is going to be present for people who have Tourette’s. It just is.
So, acceptance of that, in that place, is what we’re talking about here, and Mandy’s going to take us through this more deeply now.
We’ve touched on this maybe, but let’s, let’s put it here again. What are some of the common and perhaps frustrating public misconceptions about Tourette’s and how is that impacting families?
Mandy Maysey 19:07
So, one of the misconceptions is that Tourette’s is swearing and it very much- in the media, generally, Tourette’s is stereotyped as the swearing
[Trix in background] “Mandy it is swearing, Mandy they’re not wrong,
Sorry I’ve got ticking in the background. I’m just going to wait for him to finish.
[Trix in background] You don’t have a problem with Tourette’s, you don’t have Tourette’s. You don’t know what it’s like! Sorry.
Mandy Maysey 19:38
It’s okay (to child). So, the public misconception is that it is the stereotypical, the swearing, and I guess it’s about 17% of people with Tourette’s have the Copros. And for the people with coprolalia and with copropraxia, it is a very large part of their Tourette’s, and it shouldn’t be ignored.
But for people that have Tourette’s that is just, you know, grunting or sniffing or mild vocal tics, it’s really hard, because people say, ‘Well, you can’t have Tourette’s because you’re not swearing’.
One thing we get a lot of with people that have coprolalia is the automatic ‘You shouldn’t say that. You can’t say that. That’s rude. You’re being offensive. You’ve said that deliberately’. So, there is, again, the misconception that people have done it deliberately and that they should be able to not do it.
And also, the other, the other problem we have is that people automatically, in the same way, as if somebody is sat in a wheelchair, people talk over them, or people talk, you know, they don’t talk to the person in the wheelchair like they are a fully rounded human being. We get that with Tourette’s as well. They go, ‘Oh, aren’t they? You know, they’re quite eloquent, aren’t they? They can speak quite well when they’re not ticking’. It’s like, ‘yes, because it’s nothing to do with their intelligence!’
And it’s so frustrating trying to get people to understand that just because somebody has a disability does not mean to say they are intellectually impaired. And I understand that there are intellectually impaired people out there, and they are just as valid, but it’s quite frustrating for people to automatically assume an intellectual impairment just because somebody is ticking.
Megan Gilmour 21:37
Yes, such great information and knowledge for us to share and for people to understand. And I can see how, on the one hand, it’s ‘You shouldn’t be doing that, that’s rude’ – “You don’t really have it. It’s just that you’re misbehaving and using an excuse’. And on the other hand, if you’re not swearing, then you couldn’t have Tourette’s.
So, we’ve got all of this sort of going on at the same time, as well as that terrible sort of attribution to what that means for you as a person and what your capabilities are or aren’t, or all those sorts of things.
So how many Australian children and youth are living with Tourette’s right now?
Mandy Maysey 22:27
It’s the statistics for Tourette’s is about one in 100 and statistically, it goes to one in 200 in adults. But it’s noticeable in one in 200 adults with Tourette’s, as in, they’re better at masking it, or that there are in the same way that you get waxes and wanes, so peaks and troughs in tics – tics can go away for months on end, for some people, and then come back again.
And so, you can have larger waning periods of tics as you reach adulthood. So, you will have no tics for several months, or there’ll be mild tics, and people don’t notice them because they don’t notice you doing a funny sniff. Or people have a, you know, a habit where they touch their hair, or they touch their nose, or whatever. My dad had a [winking], and he always did, always had this sniff, and we didn’t even realise he had Tourette’s until you look back and you think, yes, he definitely did. But, but it, it’s so yeah.
So sorry, statistically, because I digress. There one in 100 children and one in 200 adults are affected by it.
Megan Gilmour 23:36
Thank you. I think where you digressed was really important however, and I shouldn’t even say however, it just really was important, because you were sharing there that the difference between an adult statistic and a young person statistic.
Mandy Maysey 23:54
We are very much trying to – there’s not enough studies being done on adults with Tourette syndrome. And there are doctors out there that will still tell people with Tourette’s ‘Well, when you reach adulthood, you know it’ll go away’. And it does people with Tourette’s such a disservice, because they sit around waiting until, until they’re 18, and there are so many people that go, but I’m 18 now, surely my Tourette should have gone. I’m an adult now my Tourette’s and it’s not like somebody flicks a switch and goes, you’re fixed.
It is a condition that mostly comes on in childhood. But just because it comes on in childhood, doesn’t mean to say that you can’t get it as an adult. Connor’s Tourette’s wasn’t noticeable until he was in his 20s, because his tics were mild, and so he’s actually got a diagnosis of clinically probable Tourette’s, even though he’s a walking, talking, yeah, tic machine, and he still is very much, you know, has Tourette’s, but is only diagnosed with ‘clinically probable’ because there’s still the research needs to be done. We need to do the studies to work at how people are affected.
And we know, certainly women that are reaching perimenopause, that had Tourette’s when they were kids, are really finding it hard because it rears its ugly head quite substantially during perimenopause.
Megan Gilmour 25:24
So there’s some really rich data in there, or observations in there, and one of them is the waning you said, as people get older, potentially that happens, but also the hypothesis is that adults learn to mask and manage it somewhat better, which is also, you know, that moment of sort of hopefulness that we talked about at the beginning is where there are things that you can do, and ways that you can practice your management of it.
And then, of course, the important point about different stages of life. So, you mentioned perimenopause there, and probably hormonal changes and whole system sort of changes is going to exacerbate it, and this leads well into the next question, because you touched on it, is there a risk of delayed diagnosis, or are most cases of Tourette’s picked up easily?
Mandy Maysey 26:24
From what I hear from the people that I speak to, doctors are so reticent to diagnose Tourette’s they don’t want to diagnose it because they’re scared of it, and they know that there is no cure, and they know that there’s not a lot that they can prescribe necessarily, that will alleviate symptoms, and so a lot of doctors will shy away.
Tics need to be present for more than 12 months. It used to be two years, it’s 12 months now, and you have need to have vocal and motor tics, and so people will get a provisional tic disorder. The doctors will say, ’Oh, it’ll probably go away, you know, but if it doesn’t, sorry, if it doesn’t go away’, then come back.
And that’s, you know, for a lot of people, that’s not what they want, they need somebody. And it’s not about accessing, you know, funding, it’s not about getting NDIS or anything like that. For people that are struggling with a condition, they don’t feel like they fit in a box until they’ve got a diagnosis. So, they don’t feel like they can be part of the Tourette’s community if they haven’t got a diagnosis of Tourette’s.
And it’s really difficult then, because they’re going, “Oh, well, I don’t really fit, because I’ve only got tics”. And this is like, well, it’s tics and Tourette’s. It actually does, you know, just because you haven’t got a formal diagnosis, and look, a self-diagnosis is just as valid as a professional diagnosis, if you are ticking and you’ve had motor and vocal tics present from all the 12 months you’ve got Tourette’s, and that’s as simple as that.
Megan Gilmour 28:01
Yes, so more important information there for people, and also acknowledging that the issue without a diagnosis is not being able to feel legitimised, to fit into a community that could support you as well, so you’re in limbo, which is a terrible place to be.
What kind of complications do kids with Tourette’s face? We have touched on some of these things, but perhaps we might talk about health complications. We talked about social complications, but health complications?
Mandy Maysey 28:41
Absolutely so the thing is, with Tourette’s, is it’s very rarely ever a standalone. It’s like I said, you very, very rarely ever get Tourette’s without OCD, and often the comorbids of autism or ADHD, oppositional defiance, pathological demand avoidance, they’re all very, very linked in.
And I think the self-damaging tics, you know, my kids have had ones where they will punch themselves in the face or punch themselves in the head. Or, you know, we’ve had broken knuckles from punching objects. Or even some tics will be – like silly things like snapping pencils, or, you know, the self harmy ones where they, you know, will get a pencil or whatever, and just jab it into – so you know the injury nature and the repetitive nature of tics being that even if you’ve hurt yourself, you will still continue to do those tics.
Connor split open his hand once and needed stitches, and it was because he had ticked, banged his hand out and hit his fridge, and so he’d opened it up, and they’d stitched it, but he still had the punching tic, still needed to bang his hand, and so he opened it back up. And at the hospital, they were just like, ‘Well, don’t do that. You’ve got to stop doing that, because you’re going to make it worse’
Megan Gilmour 30:12
But it’s involuntary.
Mandy Maysey 30:15
Well, yeah, what part of, I can’t help it are you not quite grasping! So, but as people age and so, not so much for kids, but as people with Tourette’s age, arthritis is very much a thing that they will suffer with and degeneration in discs and things like that, because of the very nature of the physicality of tics.
Megan Gilmour 30:41
Yes, it’s very challenging. And just want to acknowledge, once again, that people with Tourette’s are not alone, that there is help and support. And we’re going to definitely give you links to that. And for teachers too and educators, and of course, any anyone in the public who wants to understand more,
How are siblings and peers of kids with Tourette’s impacted? And you’ve mentioned that your own children, you know, it’s a staged process over time where that discovery unfolded for each of them. But do you see situations where there are siblings who don’t have the Tourette’s presentations or diagnosis? And how does that what does that look like in families? What do we need to be across?
Mandy Maysey 31:34
I think it’s the same with any siblings of children with a disability, you know, whether it be autism or a physical disablement, I find that there is an awful, awful lot of pressure, they are expected to be the good kid, because, you know.
We’re dealing with this, I mean, I fell foul of all of my attention on my tickers, and I’ve got to concentrate on the fact that I’m trying to deal with this, and I’m trying. My middle child, he really struggled, because he was the last one to being diagnosed, and all eyes were on the problem that we had with Trix, having Tourette’s and being suddenly, and then Connor having his mental health and his Tourette’s, and all eyes were on them, and we didn’t even notice that Marcus had started ticking. Do you know it was just like “Oh, okay”.
And I felt really guilty about that because he was the sibling that just got kind of left behind. You’ve got to be well behaved; you have got to go along to the appointments or things get canceled. You can’t go out. You don’t go on holiday. I mean, we do, but you don’t go out in the same way as you would have done before the Tourette’s; our social lives changed completely.
Friends dropped out of our lives. Family dropped out of our lives. We were in the too hard basket. And so, when it comes to the kids, you know, bringing friends home and knowing that their sibling was going to be saying something inappropriate, or, you know, doing something and then it’s that whole another level of explanation that you don’t really want when you’re a kid.
You just want to be a normal kid. You just want to get on with it and have fun and do. They don’t want to be held back by the fact that your parents are always like, yes, well, we’ve got this appointment. Yes, we’ve got to do this. And you know, you’ve got to bear in mind life is difficult for them.
So, I think siblings really deserve more support. It’s definitely something. Our Tourette Syndrome Association is for individuals with Tourette syndrome and their families. The whole idea is that everybody is included, but very much so that the siblings get a bit of a raw deal. I think.
They also get that they’re often the target of tics as well. So, you know, any of the punching tics or the verbal the verbally aggressive tics that we get can be quite, yeah, and when you’re living with that as an adult, you can kind of like, it’s okay. They don’t mean it. It’s, you know, it’s a tic. It doesn’t matter. But if you’re a kid and you’re being, you know, barraged by unkind tics, it can really mess with your mental health.
Megan Gilmour 34:19
Yes, and we just put that mental health, you know, recognition across this whole thing, because you’ve mentioned Connor and obviously you’ve mentioned, you know, for siblings who don’t have a Tourette’s diagnosis, or aren’t presenting with Tourette’s that they can be the subject of it, or they’re definitely heavily exposed in the family, and also experiencing all of the accommodations the family has to make to enable life to roll along as smoothly as it can.
And also, you mentioned there the isolation. You touched upon this at the beginning, and let’s just pop it in here for people to remember. Mandy you were saying that family and friends put you into the too hard basket and given everything that you’re saying that’s not a shock. That won’t be a shock to people, that was the way that people dealt with it. It’s an explanation, not an excuse. And must feel incredibly terrible to be sort of isolated in that way, through something that can’t be helped or that is involuntary.
Mandy Maysey 35:39
Absolutely it. It is. It’s one of those things. Having gone from a fairly big social life, we had friends, we spent time with friends, going away for weekends and then suddenly everybody takes a step back. Because, you know, we have to, you know, we love our kids, but we have to live this life with Tourette’s and the people that don’t want to have to deal with it can just absent themselves and can say no thank you. We won’t go this time.
Yes, and so the invites stop happening there. Yes, your social circle shrinks. You don’t go out as much because you’re trying to come to terms with this existence and with the Tourette’s and the tics and the fact that you feel like everybody is staring at all times. And you know what? Sometimes they will – people will look and go, ‘Oh, what’s that? And then they’ll go, oh, yeah, weird. And walk on’.
But some people will actually stop you and have a go or, you know, and it’s that constant need to explain yourself over and over again. It’s exhausting. So, I understand why people drop out of your lives, but it doesn’t stop it from hurting and it doesn’t stop the kids from feeling like they are the reason why we don’t have the outings and the experiences that we used to have pre-Tourette’s.
Megan Gilmour 37:08
Yes, it’s just a compounding factor, as you say, as well as the fact that there are those comorbidities, or those, what I like to call the Venn diagram of issues, because I always add into this moment when I’m talking about this, this Venn diagram of issues is people with a Tourette’s diagnosis live in rural and remote areas. They live in low socio-economic situations. They can be from non-English speaking backgrounds, LGBTQIA+ children.
And so, we can then see all of the different range of intersectional issues that are going on at the same time. It’s not just simply one thing, and this is another important factor to build into this, you know, understanding.
Mandy Maysey 38:05
Absolutely, and you’re not just dealing with one thing. That’s the thing so many conditions have comorbids, that, you know, you’re not just dealing with one thing. I mean, Tourette’s, it seems to have taken over our lives.
But, you know, we still deal with the autism, we still deal with the ADHD. We’ve still got the ODD and everything else, and then you’ve got the other conditions – Ehlers-Danlos seems to be quite common in neurodivergent people, as does POTS – Postural Orthostatic Tachycardia Syndrome. So definitely, my two younger ones have both of those. And so, all of these things that you’re dealing with, you’re part of lots of different kind of tribes, and then it just depends on which one’s taking up most of your taking up most of your focus.
Megan Gilmour 39:01
Yes, thank you for adding that in, because we are hearing this from others as well. So, you know, in our conversations with POTS
Mandy Maysey 39:11
And you actually mentioned as well, the LGBTQ, and what is it, you’re eight times more likely if you’re neurodivergent, you’re eight times more likely to be part of the LGBTQ community if you’re neurodivergent.
Megan Gilmour 39:30
I wasn’t aware of that. I have just this week seen at least twice on my news feeds from reputable news sources that it’s really time that we even start reframing neurodivergent, when the percentage of the population who are now – so I hope this means that we’re moving into a time where, you know, we can start to dissolve some of those borders and barriers or those hard edges around things, because it just doesn’t make sense when more than the majority of people have these, you know, characteristics and life experiences.
It’s just being human. I think that’s where it’s heading, and that’s a good thing. And then it’s breaking down the prejudice and the perceptions and the big thing with humans is the discomfort, the absolute discomfort, no matter what they’re sort of carrying privately or secretly in their own lives, it’s that we’re all we’re all in that basket of not being able to deal with our own discomfort very well at all, and we don’t know what to say, we don’t know how to react, so we kind of slink off. And as you said, people will just sort of disappear
Mandy Maysey 41:07
You see that’s why kids are great, though, because kids are not bound by those things. Kids are just like, “Yeah, whatever. But you make those funny noises. Fine, that’s, that’s what you do.” Trix was in grade three, when they developed coprolalia earlier.
And so, it was quite, yeah, it was quite confronting for kids in grade three to hear some of the words, because, you know how they get hold of the – I suppose it’s hanging around other people with Tourette’s and hearing it – you’ve only got to hear a word once, and it’s in your head. Do you know what I mean? And, and tics, especially coprolalia, will find the most inappropriate thing to say. And those things were said in grade three.
And the teachers told the kids look, Trix says these words, and they can’t help it. You’re just going to have to get over it. You’ll hear it, but you’re not allowed to say it. Trix can, because that’s the way Trix’s brain works. You cannot say it. And the kids went, Ah, alright then!
Megan Gilmour 42:13
I love that you’ve added this in, because one of the reasons that I my work is with children, is that I just love them, and I love how children just have these idiosyncrasies, like every single one of them and just, you know, so weird, each in their own ways, and we’re really like that as humans, we just kind of brush off those edges and try to fit into a box and behave as we get older.
But I love the presentations of kids, and thanks for acknowledging that once peers are told what it is and know and understand, they do just get on with it because they really just want to play and have a good time and learn and like experiment and live their own idiosyncrasies out, whether it’s a deep attachment to something strange or, you know what, for a moment in time and then that goes.
So, I think it’s a wonderful thing to acknowledge and gives me so much hope for what can happen in schools if we trust children and young people to be given an understanding of something and just to go, oh, okay, I know what that is now on with it.
Mandy Maysey 43:35
Yes, absolutely. You know, kids, kids accept these things way better than adults, and I find that even in schools, that adults are still stuck behind that “But they can’t say that they can’t say that to me, I’m a teacher. They can’t say, you can’t use that language in schools.’ Well, I’m sorry, but you know, you’ve got no choice. It’s not like they’re actually doing it on purpose.
So many teachers will insist that it’s, yeah, “You can’t say that, that language shouldn’t be in schools”, well, yeah, great. No, it shouldn’t, but it is, have you been in the playground lately? Because it is absolutely.
Megan Gilmour 44:15
That’s right – it might be going on privately for people without Tourette’s. Do you know what I mean? Kids even experimenting with each other when adults aren’t around in terms of what they say and do. But that’s something different.
But I think it’s sort of that black and white way that we’re conditioned to see what’s right and wrong and then sometimes that firm boundary gets put in place for people who don’t have a choice, really. So that’s what we’re talking about here.
So, what’s the current population of school aged children with Tourette’s and how accurate is it? Is that data tracked? For example?
Mandy Maysey 44:55
No, probably not. The thing is, there’s an awful lot of people with Tourette’s that don’t even realise they’ve got it, or people are waiting two years to be able to see a psychiatrist or a pediatrician because of the way the health system works. There’s a lack of people that are out there that can diagnose or will diagnose.
And so many people like you were talking earlier on about rural areas. Some places there just are no specialists to be able to diagnose it, or, you know, treat it. Tasmania, I know certainly, I think there was one pediatrician, and he’s retired, so if you want to see somebody and get a diagnosis, you know you’ve got telehealth, possibly, if you’re lucky, but you’ll still wait six to 12 months for a telehealth appointment for some of them.
So, there are so many people that are just dealing with, “Oh well, it’s just a sniff, or it’s just a grunt or it’s just their funny habits”. So, I have, I wouldn’t be able to tell you the data on that exactly now. Yeah, it’s about one in 100 so you’re looking at one in 100.
Megan Gilmour 46:08
Well, I can give you an estimate based on that. So yeah, if it’s one in 100 and there’s 4 million school students in Australia, that’s 40,000 kids. That’s if you have a diagnosis. So, and it’s worth pointing out just how big that number is, and there will be children in every school with Tourette’s, given that number.
Mandy Maysey 46:36
I always chuckle when you come across people and they’ll go, ‘Well, I’ve never met anybody with Tourette’s”. I’m thinking, yes, you have. You absolutely have. There is no way, on the ballot, unless you live in a remote town with three people. There’s no way you haven’t met somebody with Tourette’s. You just didn’t realise because they didn’t have the stereotypical swearing.
Megan Gilmour 47:00
Yes. I’m thinking about it now myself, as we’ve been talking.
Do kids with Tourette’s currently miss a lot of school? And why, if they do?
Mandy Maysey 47:11
Yes, there’s a massive amount of anxiety that goes around, ticking and not fitting in. The anxiety at being told off and things like that. So, we see a lot of school refusal.
We’ve always, in our house had a no ‘no’ days. You can have a mental health day if you’re really struggling. But we’ve always said it doesn’t matter how bad your tics are, you still go the problem with that is, as you get older, bullies are there. And there’s a there’s a lot of intolerance.
And then there is just that constant, is your child’s mental health more important than their academic achievements? And I’ve always very much been a ‘if they don’t get an education, then how are they going to manage’, you know, you got to do mainstream education, because that’s the way to do it.
But I know an awful lot of people that have the homeschool or do distance learning because just because of the bullying or because of the intolerance in a classroom for anything that’s slightly left of central.
So, I’ve always pushed very hard for my kids to stay in mainstream schools. But having said that, my now 17, almost 18-year-old dropped out at the end of grade 10 because he couldn’t cope with the bullying. He couldn’t cope with the stand-up arguments with teachers in a classroom when they were standing there saying, “Get out. You can’t say that in my classroom.” And he’s saying, “Well, it was a tic. I didn’t mean it” – “I don’t believe you.”
And here’s the thing is, it’s the disbelief. If people really think that somebody wants to say the things that they say when they’ve got copros, it’s funny for five minutes. It’s funny very occasionally, when it’s, you know, amongst friends. But when, when they say the things that they say in a classroom full of children in front of a teacher or to a teacher, it’s not funny. It’s really quite, you know, upsetting.
And so, Marcus got to the end of grade 10, and he just couldn’t do it anymore, so he dropped out and he went to TAFE and now Trix, my youngest, has just got to the end of grade eight, and has spent the last 12 months saying, “Do I have to go back to that hell hole please. I don’t want to go. Please don’t make me go. It’s awful.” And you know, “So how was your day to day?”, “Yeah, it was okay. I got told to shut up three or four times”. You know? It’s just like, “oh, only!”, you know.
And so, there’s, as a parent, it’s been exhausting this last 12 months, especially constant phone calls from the school, because they can’t cope with this behavior, they can’t cope with that behavior. What are we supposed to do with – you know, they’re throwing a pencil up and it’s hitting the fans and shattering. Well, is it, you know, it’s a tic. They’ve said it’s a tic, yes, but how do we handle it? We’ll turn the fans off. You know, it’s just like simple things like that.
But the constant need for them to come to me for solutions for absolutely everything has been really exhausting. I’m trying to hold down a job, and I’m getting phone calls going, you need to come to the school for a meeting now, because we can’t cope with this tic, that tic, whatever. And so, it actually got to the end of this year, and I’ve had to reframe – is my child’s mental health more important than their academic achievement, and it absolutely is.
So, this year, they finished in mainstream education, and they’re going to an alternative school that that approaches education in a different way. It’s for kids that are at risk of dropping out of mainstream education, and there’s a lot of neurodivergent children there. There’s a lot of kids with, you know, ODD, OCD, all of those, and it’s accommodated now. It’s a smaller setting, so it’s going to be less fraught, and there’s no transitions going to be involved. So, they’re in one classroom.
And so, we find tics are really set off by things like heat or cold or loud noises or a lot of frenetic energy. Well, if you can imagine moving around a school, going from classroom to classroom, is that time where there is so much going on that that’s when they’re really ticky, and then it’s difficult to get settled again once they get back into a classroom.
So, these are all times, whereas the alternative schooling, they stay in one classroom and the teacher changes classroom around. Yeah. So, for us, we realise that having me stomp my feet and go no mainstream education, I work in mainstream education. I you know, I fully believe that if we do it right, mainstream education is for everybody. However, I had to bite the bullet and just say, no, I can’t do it. I can’t put them through that every day now.
And I think if we actually reframe it and you do what’s right for your family, and if that means going to an alternative school, or if that means doing distance learning because their anxiety is too much for a mainstream school setting, you have to kind of go that way.
And I don’t want to see kids with disabilities out of mainstream schools, because I think it’s really important for everybody to learn, and I see that in my job, because I work with kids with needs, in my teacher aide job. So I see the benefit of having children in a mainstream setting, how much they get from it, how much the other children get from it, knowing that they can, you know, if you frame it right with them, I’ve got kids that can turn around to the kids next to them and go, can you help me with this? Can I have a hand?
Because my job, as far as I’m concerned, is to obsolete myself. If I can get them independently working in the classroom, I’ve done my job, and so even if it means somebody spelling something out for them, or, you know, writing something on a whiteboard for kids that just can’t write properly, write it on a whiteboard and they can copy it, or whatever, you know that’s what it’s all about, and it teaches them to be empathetic as well, which means that we’ve then got children coming through the schooling system who are empathetic or understanding, and they get disability in a way that I think previous generations haven’t. They understand it better. And if the children aren’t in mainstream education, that the children with disabilities aren’t in mainstream education, then that learning is not going to be there.
Megan Gilmour 53:45
Yes well, these are such important points. And you know, my brain’s just lighting up because if we designed for difference, everyone would win. And you’ve made this really critical point that we talk about as well, and that is, it’s not just about us helping these kids it’s about what these kids bring to our world when they are present, when they are part of things, when they can be involved, engaged and participating.
And I hear your point about mainstream, because this is my point of view as well, while recognising, like you’ve confirmed, is that it’s really tricky, because until our mainstream schools, unless and until our schools are enabling this in a way that everybody can. You know, where inclusion truly floats all boats, the priority has to be the mental health and wellbeing.
And it’s kind of building on what I said earlier about the statistics of people who are being classified as neuro divergent or even neuro diversity, and then being shuffled off into a non-mainstream setting –
how sustainable is that? Because now we’re just, if we’re talking about 40% of people, for example, are we just sort of dividing society down the middle and saying, will you go over here with your people, and you go over here with your people, which is a false dichotomy.
It’s a false dichotomy as well, because of the Venn diagram that we’ve talked about, and it just means that post school, that difference, which is artificial, in my opinion, and is starting to come out, you know, in narrative now, like, are we can we really continue to sort of classify people in this way – just will flow on throughout life.
You can never rejoin those separations then in workplaces or – because the point that we’re making quite palpably here is it’s about understanding and acceptance, but you can’t have that without exposure to all the differences that we have. You can’t sort of quiet the fear or quiet the discomfort, unless you’re exposed to it in a safe way where everyone’s together.
So, this is the challenge I think, that we are all facing, is families having to privatise education in homes across Australia right now, and typically mothers who, our data shows, are bearing the load of caring and also trying to work at the same time. So, with children at home, or you know, it’s a really complex situation.
And of course, our teachers in schools, who, you know, the student population changes are going to affect teachers, because teachers and students go hand in glove. Any lack of wellbeing in a teacher community will affect students, and vice versa.
And I think we’re seeing that. We see these wellbeing studies where, you know, here’s what students need for wellbeing, let’s focus on that, and now we’ve done all these studies on teacher wellbeing. I said to my team, let’s look at these. Ah, they’re exactly the same. Yeah, goals are the same.
Mandy Maysey 57:51
What has concerned me with education is the lack of support and training for teachers and school staff around disabilities. The fact that, you know, for a long-time special needs, was an elective if you were doing a teaching degree, and it was like, what was it six weeks or whatever?
Megan Gilmour 58:15
I don’t think it’s changed
Mandy Maysey 58:18
I had a teacher tell me it’s fine. I know all about autism. I’ve done a worksheet,
Megan Gilmour 58:23
Yes, no!
Mandy Maysey 58:28
And that is a cause for concern, because if the teachers are equipped to be able to provide the support in the classroom and manage some of the things that they come across having kids with extra needs in a classroom, it all flows so much easier. It makes the experience better for the teachers. It makes the experience better for the kids.
And if we can just normalise the fact that kids shouldn’t necessarily be sat, being quiet, being still, you know, kids can listen and fidget.
Megan Gilmour 59:10
And do!
Mandy Maysey 59:11
Kids can listen – and do – kids can listen and not look, you know. But there’s that feeling that “Look at me, look at me” you know “You’re not looking at me, so you’re not paying attention”. It’s like, yeah, “But if I look at you then I really can’t concentrate, because then I’ve got to work out what I’m doing with my face.” And, yeah,
Megan Gilmour 59:21
Well, what we’re saying, and I’ve written an op ed on it, is that we’re facing 21st century challenges, including with wellbeing, and there’s a whole range of external factors that we can’t control that is contributing to that, and we’re seeing it without within adult populations, as well as, obviously, for children and, you know, post-COVID trauma, we’re seeing what traumatic events do and what effect they have on children and young people.
And we saw this because it’s at scale, right? It’s just happening at scale all across the world. And my argument is that we need 21st century school systems. If every school could be operated through a flexible model, and that the way that we regard attendance and absence and frame that in our data capture.
The model was built for an industrial era, factory worker model. Our world is different now, and our medical systems have changed and moved along. So, one of the ways that MissingSchool has been working on this is, how do we use two-way digital connection into the classroom?
And we’ve even seen schools apply this inside the school, where a student needs time out in another room, but can still join through a technology into their own classroom. And, you know, we sort of hear, “Oh, that didn’t work, remote learning didn’t work in COVID”, well, we’re talking about telepresence. We’re not talking about remote or distance.
We’re not talking about cordoning kids off into, you know, different types of school. We hear people say, “Well, if children can’t come to school, then distance education, but we wouldn’t do two-way, digital connection.” And I say, “You do realise distance education is a digital connection model!”
Mandy Maysey 1:01:26
Yeah.
Megan Gilmour 1:01:26
And so why couldn’t every school be providing that?
And of course, as you said, teachers should not be having to make this up themselves. If a small charity’s been able to support teachers to use the technology we’ve provided in our proof of concept, then surely IT departments and education systems can set that up so a teacher can teach once in the classroom, with some students dialing in remotely, and then people say, “Yeah, but they’ll stay away. Then they won’t want to come back.”
Our data shows that children who do maintain a connection to their own school and teachers when they physically can attend, will and do. But if you don’t provide it, they won’t
Mandy Maysey 1:02:17
Yeah, if you’ve got the choice, I think you know, for the majority of it, people choose connection. They choose to be present.
Megan Gilmour 1:02:26
Yeah, that’s right.
Mandy Maysey 1:02:27
It’s just giving them the ability to not fall behind. Because that’s one of the things that ends up being a big obstacle for kids, is that the more school you miss, the further you drop behind. The further you drop behind, the less you have in common with your peers.
Megan Gilmour 1:02:52
No shared meaning
Mandy Maysey 1:02:54
Exactly. Yeah, exactly, and we see it, it ends up coming out as a behavior, because they feel out of their depth, they feel like they’re being left behind, and the only way that they can cope with that is to act out.
Megan Gilmour 1:03:02
Yeah, and social isolation increases social isolation. And we spoke to Michelle Lim from Ending Loneliness Together yesterday, and that was a fantastic conversation as well, where we as humans are designed to connect – that is hardwired into our brains.
Mandy Maysey 1:03:30
Absolutely,
Megan Gilmour 1:03:30
And we don’t do well – if anybody doesn’t remember COVID and isolation – we don’t do well when we are isolated, and that is a survival mechanism. That’s why it’s hard wired.
So, the more that children are distanced and can’t continue their learning in their own community school. And as you said, there are alternative schools that become their mainstream but if you can’t maintain connections to places and build meaningful connections with the people there, you will feel a greater amount of social anxiety in trying to get back there.
Mandy Maysey 1:04:09
Yes, and how hard is it to go back to something when you’ve been away for a while.
Megan Gilmour 1:04:14
Even as a worker, it’s you know, we go on holidays, we come back. We’ve missed conversations. We don’t know what people are talking about. We feel left out. There’re all these funny stories we tell ourselves about them and about those moments.
But I think you and I sound like we’re very much on a similar thought process about the way that schools, our future schools, can accommodate, and we already have all the things we need to do that today.
We have the Disability Standards for Education, which enable all of these things we’re talking about to happen, and different accommodations to occur, and schools can be funded once they’re following the standards for a particular student. And so, you know, there are things that we can do that we’re not doing.
So, I wanted to move into the last section now and ask, are there any bigger challenges or vulnerabilities at different moments in a student with Tourette’s school life, and what should we do about them?
Mandy Maysey 1:05:35
Puberty is horrible for everybody, but I would say that puberty is usually when tics reach their absolute peak, and in teenage years, the one thing you don’t want is anybody looking at you. The last thing you want is to draw attention to yourself. You want to blend in and unfortunately, Tourette’s doesn’t let you do that, and Tourette’s puts a target on your back and shouts, this is me, hello, everybody, even if you want to dig a hole and fall into it.
So, like we said earlier on, kids are really understanding and accepting, especially when they’re younger. But I would say the teenage years are absolutely horrible, because they’re rough. You get bullies, and bullies are more vocal when they reach their teenage years, I think.
And kids can be so mean, you know, if you don’t fit in, if you’re not an identikit teenage, whatever, boy or girl, then, yeah, you’re something other, and then you’re something that could be either the butt of people’s jokes or, you know, a regular kicking, you know, kicking post.
Megan Gilmour 1:06:52
Yes, and you said target, and I imagine that for a bully who doesn’t understand, or for – I should remove that word and just say for a young person who doesn’t understand and is acting out their own pain in a maladaptive way that targets other people, other children, other students. If a person with Tourette’s was exhibiting, you know, the tics and behaviors that could also be taken as an insult to that other student, and that would be, even though it’s involuntary, it would be seen as fair game for a fight or whatever else.
Mandy Maysey 1:07:36
And I think one of the things we get is, you know, because everybody needs to fit in, everybody needs to be the same. Everybody needs to fit into their nice little box. People with Tourette’s, don’t. They get accused of faking it for attention, faking it because, you know, because you want to get away with swearing at a teacher or whatever.
And so, you do get that, and that’s that unfairness, isn’t it? Is that injustice? They’re getting a bigger slice of pie because they’ve got a special need, and I don’t, and so I’m going to pick on them for it. kind of thing. You know?
Megan Gilmour 1:08:13
Or try to trigger them into it even.
Mandy Maysey 1:08:15
Yes, absolutely. And it’s funny, you can get a rise out of somebody by triggering, triggering their tics. If you can trigger their tics, then kudos to you. And you know, with your mates, because your mates think you’re really funny, because you’ve got them to do that thing. And look what I can do, and that’s manipulating control, and a lot of these people are, you know, especially teenagers. They have no control over their lives. They don’t have any money. They want autonomy. They haven’t got autonomy. And so, it’s easier to pick on the person that is to them, the weaker person in the chain, kind of thing.
Megan Gilmour 1:08:51
And all the hormonal surges that are going on there as well, that are causing, as you said, and we talk about this on these calls, adolescence is, and puberty is a difficult time. If there’s nothing else going on in your life,
Mandy Maysey 1:09:10
You couldn’t pay me enough to go through puberty again. I can’t think of anything worse. I hated it. Hated it, hated it because it is just such a rough time emotionally and physically and yeah, just that whole trying to understand who you are, where you fit in the world.
And I know that teenagers, especially at the moment with the way the world is, are really struggling to work out where they fit in the world, because for a lot of it, the grown-ups aren’t in charge these days.
There’s too much arguing, fighting amongst the world leaders and politicians, and if the adults aren’t in control, the kids aren’t going to feel like they’re in control, are they? And I think we see that a lot in behavior that’s coming out in schools.
Megan Gilmour 1:10:00
It’s a complex world. And one question that’s not on my list, but it’s the second but last question, and it is for a person who has lived with people with Tourette’s, what is it like when you can move through- block – disregard those tics. What do you see about your children as people?
Mandy Maysey 1:10:30
You, know, it’s funny because I would not be the person I am today if I didn’t have children with Tourette’s. I wouldn’t be doing what I’m doing. I wouldn’t be who I am. I have learned such a lot of patience and understanding.
I would say I’ve changed more over the last seven, eight years than I really have changed in my whole lifetime, since, well, since reaching adulthood, the changes in me, because I’ve had to move with the times.
You were talking about COVID and the disconnection that people felt during COVID, we didn’t feel it as a community with Tourette’s, because you’re standing on quicksand when you live with Tourette’s, things change, you know, and you live with it, the uncertainty of what today is going to bring.
And so COVID wasn’t as big and scary to us, I think, as it was to a lot of people. We just rolled with it. You just forward momentum. You just keep moving forwards.
And so, I learned so much. My kids are great. I absolutely love them. They are absolute firecrackers, um, oh, my goodness. They are so strong willed. Um, but, yeah, I owe them so much. Our journey together has been a journey, but definitely one that I’ve come out of, absolutely for the better. Yes, made me, made me a better person.
Megan Gilmour 1:12:05
Yes, and that’s a lesson for us all. And I imagine they’re beautiful people right there in front of you, and some of the bravest people, some of the bravest people, you know, right?
Mandy Maysey 1:12:17
Oh, absolutely, yes. And it’s one of those things you hear that whole, you know, it’s so it’s so annoying when people talk about people with disabilities as being an inspiration. You’re so inspirational. What? Because I exist, but because I get up and I go about my day, and I do.
I understand that whole inspirational – because my three give me the inspiration to actually get up and do what I need to do, to fight the fights I need to fight, to advocate in the way I need to advocate.
Megan Gilmour 1:12:49
Yes, but that’s also going to have exponential effects on the whole community and the whole country and globally, because if people like you don’t do this work, we’ll never change.
And that’s why I look at, you know, kids in these circumstances, and the fact that there’s a real human there at the center of it with desires, wishes, needs, goals, a contribution to make, things to gift us that we will not ever be able to see unless we’re able to change the way that we identify with difference. And that is all around us. I think this illusion of what’s normal is breaking down.
Mandy Maysey 1:13:47
Yeah, oh, I hope so. Normal is boring
Megan Gilmour 1:13:52
It’s not even real. It’s just some kind of fiction we’ve all bought into. And as I said, and as you said, so clearly today, when you have tics with Tourette’s, there’s nowhere to hide.
Mandy Maysey 1:14:12
No absolutely
Megan Gilmour 1:14:13
But there’ll be plenty of things going out on out there for people who are seemingly normal, none of us know or realise. And I think you know it’s such. It’s why we need to have these conversations and share them and be quite forthright about it as well. If we don’t tell the stories, then nothing can change.
Mandy Maysey 1:14:43
That’s right.
Megan Gilmour 1:14:45
So, as we move into this last question, it’s about anything else you’d like to say to us about school quality of life, for Tourette’s Syndrome and for what governments or schools could currently do to make that better?
Mandy Maysey 1:15:00
Look, like we touched on earlier on, I don’t think teachers and school staff get enough training and support to be able to handle people with Tourette’s especially, I guess from my point of view. People with ADHD and autism – we support.
All disabilities – I think, you know, need the extra training and support. It would be great if the funding was there for the schools. And this is the one thing we come across, is like the alternative school that my youngest is going to, they because all of the children at that school have needs, they can access funding in a different way than mainstream schools can, and so the government funding just goes straight to them and – so all of the children are fully funded.
And in mainstream schools, that doesn’t happen. They’ve got to jump through so many hoops to actually get any funding. And then the slice of pie is slightly smaller because it’s in a bigger school, and then you have the whole, does that child have needs, or is it a behavioral thing? Or, you know, have they got a diagnosis?
We have, for a few years ago, Trix couldn’t be in the disability dance – he couldn’t do dance because the Tourette’s makes them so uncoordinated, they can’t do dance in the same way, and so Trix wasn’t allowed to be in the disability dance group because they didn’t have the right disability. Tourette’s wasn’t funded for the dance, for the dance group, and it was just like, “I’m sorry, my child has a disability”, “Yes, but it’s the wrong kind of disabled”.
And it’s barriers like that, that cause, you know, I know that financially, the schools that Trix has been to have not had the right funding to be able to accommodate Trix in the way they should do. But they’ve had to, you know, ‘rob Peter to pay Paul’ to fit, because otherwise, if they’re not making those accommodations, everybody’s life is so much more difficult.
And so, the way, the way schools are funded, the way funding goes towards disabilities, is kind of not right. It all needs fixing.
Megan Gilmour 1:17:21
Yes, and hopefully, as we move through the next decade, those silos are stopping. And it’s all framing issues, it’s all how things are framed, as soon as we change the frames, we we’re looking at something different, and that some we can call them barriers or silos, but we have old frames on new portraits, and they don’t work.
Mandy Maysey 1:17:53
Yeah, that’s right. Just silly things like movement breaks, flexible seating, you know, dimmed lighting, less.
Megan Gilmour 1:18:01
Different ways to do assessments, different ways
Mandy Maysey 1:18:03
Yes. Goodness, one last thing, Trix had for a long time a tic where, if they were given a written assessment, they’d eat it. And so, we had at their last year of primary school, they were prevented from getting a mark in one of the subjects because the school said, if they eat the next assessment, then we are not going to give them a grade.
Megan Gilmour 1:18:29
So that assessment couldn’t be enabled into another mechanism.
Mandy Maysey 1:18:35
No. Apparently, not because they weren’t thinking outside the box. You know, they had enough to be able to see what Trix is capable of. The teacher knew Trix well enough, and they could have made a, you know, a good judgment call, but it was, it was a matter of principle for them. “We’ve told them not to eat it. They’ve eaten two now, and if they eat the next one”…
Megan Gilmour 1:18:57
It’s a little bit punitive, isn’t it? I mean, the Disability Standards absolutely enable an alternative, well, an adjustment so that assessment can be made that suits the student’s particular circumstances and needs. So, the Standards is very clear about that.
Mandy Maysey 1:19:12
Yes. but I think there’s so many teachers that aren’t necessarily aware of differentiation and accommodations. And, what a lot of them tend to forget is that accommodations are not suggestions.
Megan Gilmour 1:19:24
Yes, that’s right. That is absolutely right. And I think it’s also the association of the Standards with a student whereby, you know, saying that doesn’t fit into our disability criteria. Well, in a school, yes, it actually does.
I’ve read the Disability Standards. It’s very comprehensive in terms of what is considered a disability through that lens. In other words, any medical condition, any mental condition, any imputed – i.e., where it’s symptomatic, and we don’t know what it’s called, but it’s presenting – is covered by the standards it’s interpreted. It can be interpreted, interpreted quite broadly.
Mandy Maysey 1:20:12
Absolutely. It’s having the education and knowing, you know, understanding the documents themselves, and realising that you know these things exist. And I think there’s so many school staff that don’t realise.
Megan Gilmour 1:20:27
And the great thing is, for anyone listening who, who is in this circumstance, is that you’ll be able to, and we’ll give you the details in a moment, head to a place where you can get support.
And the other thing is that speaking to the school through the right language is also very helpful, and we’ve found that. So, where a family with Tourette’s can say to a school, can talk about the Disability Standards and provisions through it, just sometimes connecting that teacher to the Standards, and them sort of making that connection that they might not be making, because every teacher in Australia is aware of the Standards.
While they might not be applying it in every circumstance that it applies to, once you kind of speak that language, you’re one step closer to talking about adjustments, to documenting adjustments, to the school getting additional funding, because once there’s an ILP or an adjustment in place for a period of time, then we have these mechanisms that sort of flow through.
So, we dropped that there as well as something for people to think about. And that brings us to our call to action. Mandy, what’s your call to action for Tourette syndrome in seven words or less?
Mandy Maysey 1:22:00
Empathy, understanding, acceptance, education, see the person, not the disability.
Megan Gilmour 1:22:07
Amazing. From MissingSchool here, we want to celebrate you and your organisation and your work and your knowledge, your lived experience, and what you bring to our community and to schools as well. In your own professional career, we celebrate people like you.
We’re so grateful to be able to have the engagement with you and to hear that you’ve said you have developed as a person and been transformed by your experience is something that we can all hold as something dear, because it’s making a difference in people’s lives.
So, we want you to head over to Tourette Syndrome Association of Australia, and you can find them at www.tourette.org.au [https://www.tourette.org.au] and Tourette is spelled Tourette, is that correct Mandy?
Mandy Maysey 1:23:19
Yes.
Megan Gilmour 1:23:20
Go there, give generously and find like-minded people and support and resources. The Tourette Syndrome Association of Australia, is doing incredible work to ensure that you are not alone, whether you’re a family student, or even teachers who are having an engagement in this way, there’s something there to find. Thank you so much for joining us on Live and Learn today, Mandy,
Mandy Maysey 1:22:33
Thank you very much for having me. It’s been a pleasure.
Megan Gilmour 1:23:52
Thanks everyone for tuning in. Help us turn up the volume so all kids are seen and heard. Follow along, like, share, comment, or leave us a review, because we love hearing from you. And if you want to donate, head to MissingSchool.org.au, because every dollar makes a difference.
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