RECORDED: Friday 31 July 2026
SUMMARY KEYWORDS: Muscular dystrophy, Duchenne muscular dystrophy, DMD, neuromuscular conditions, gene therapy, lifespan, fatigue, learning difficulties, behaviour difficulties, school participation, individual learning plans, disability standards, inclusive education, family support, quality of life.
SPEAKERS: Megan Gilmour, Alison Wason
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.
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 we have Alison Wason. Alison Wason is a secondary school teacher of more than 35 years and mum to Jack, 25, who has Duchenne muscular dystrophy or DMD.
Alison brings a broad understanding of muscular dystrophy with particular insight into DMD, including its impact on family life and schooling. Her perspective draws on professional and lived experience, conversations with other families, and support from Muscular Dystrophy New South Wales, Save Our Sons Duchenne Foundation, Duchenne Australia, and DMD Therapeutic and Behavioural Consulting.
Welcome, Alison. We’re so excited to have you on Live & Learn.
Alison Wason 01:44
Thank you very much for having me.
Megan Gilmour 01:48
Yes, so today we’re here to talk about supporting school connections for students with complex medical and/or mental health conditions. So, let’s head straight to the first question.
Alison, tell us how muscular dystrophy and Duchenne muscular dystrophy, or DMD, impacts kids, and why it’s something every Australian needs to know and care about.
Alison Wason 02:13
Okay, so muscular dystrophy is the overarching term that covers 30 plus more types of muscular dystrophy. So, these are rare, complex genetic conditions that are known as neuromuscular conditions.
In Australia, the ballpark figures are around 40,000 people have a neuromuscular condition. So, that is some muscle weakening, some part of their muscle configurations that doesn’t work as most people’s does.
Duchenne muscular dystrophy is the one that we’re going to talk about more so today. Duchenne muscular dystrophy predominantly affects boys, and that’s because it’s carried on the X chromosome. So, you only need one good dystrophin gene, which is what causes Duchennes, to have everything working perfectly.
So generally, in girls, when there’s two X chromosomes, one of them is fine, and there hasn’t been any alterations to the dystrophin gene, and therefore it’s very, very, very rare that girls will have Duchenne muscular dystrophy. There are some, and I’ll try and say kids when I’m talking about or children, but I will tell you, I’ll slip into boys because predominantly it is boys who are affected by it.
The dystrophin gene actually rebuilds the protein in our muscles, so when that’s not working, when you and I exercise or do things, our muscles wear and need replenishing, and that goes along normally. In a person who has Duchenne muscular dystrophy, that doesn’t repair and continue working.
So initially, these children have very normal physical attributes, and then it really varies in terms of age as to when these become more noticeable. So, for some children, it can be shortly after birth. With our son, it was not until he was nine, which was an extremely late diagnosis, and it then shows itself in weakening of muscles, difficulty in walking, difficulty getting up off the floor.
Duchennes is actually a progressive disease. So, it then continues through life to the point where people are needing to be fed. They’ll be on aspirators for breathing. They’ll have help at night with BiPAP machines, which are similar to CPAP, but are pushing air or bringing air out more.
So, the important thing, all Australians knowing about it, is that at the moment there is no cure, and so when people are diagnosed with this, it’s completely life changing. And the stats are about one in 5000 boys who have Duchenne muscular dystrophy.
Megan Gilmour 05:45
Well, that’s certainly cause for people to care and gets us into the zone of using your incredible knowledge and expertise and lived experience to understand more about this and, of course, what it means for school.
So, Alison, many people probably assume things about DMD. We’re going to focus on DMD. What’s a million dollar question you get from parents or loved ones when their child experiences or is diagnosed, as in your son, with DMD?
Alison Wason 06:22
Yes. So, I’m going to speak as a parent, and what were my million-dollar questions, because I was talking to the clinicians and the geneticists and the doctors and everybody, and a few, what a few other people have said.
So, I suppose the million-dollar question initially is: Is there a cure? And at present times, there’s not. So, there is some gene therapy happening. There’re some clinical trials happening. There’s a lot of that happening in the states and in the UK. There’s some that have been like coming towards Australia, and then the therapeutic goods say no, we haven’t got enough proof. I actually can’t tell you at the moment if there is any happening in Australia at the moment, but yes, there is no cure.
So that’s I think the big question is, well, what do we do?
Alongside is then what is this person’s lifespan looking like, and that is increasing significantly because of holistic practices and the care that’s given and new research that’s happening. So, 16 years ago, when our son was diagnosed, the specialist said to us, “Well, 10 years ago we would have said to you, go home and hopefully he’ll get to his mid-teens. They said five years ago we were like, “Well, go home. We guess you’ll get to your 20s, early 20s.
And then 16 years ago they were then saying to us, we actually don’t know what the life expectancy is because there has been such an improvement in treatment with the use of steroids and the use of medication for heart health and the use of allied health interventions. So, they said, just go and live your best life, and we’ll help you along the way.
The other, again, million-dollar question is, what will their life look like? That if this is a progressive disease, what potential do these guys have? What are we aiming for them as a rewarding life? So, yes, it really does rip the rug out from under your feet when a diagnosis is given, and it’s your first thought in the morning and your last thought at night. But then it moves on, and it becomes your new normal, and things happen.
Megan Gilmour 09:03
Thank you for setting us off on such strong footing to appreciate what’s going on here. On the back of that question, you’ve sort of gone into this, but what’s the most important thing that you, having all of your experience, what’s the most important thing that you want families and young people themselves to know?
Alison Wason 09:31
So, really importantly, DMD is – like – you’re not defined by that. So, you’re not the disease, the prognosis is not you, so that these people and these families still have hopes and dreams and likes and dislikes and wants and ambitions and the desire to travel, all those things. That’s what you need to be aiming for.
So, we need to be hooking in with these kids like every other member of our family, and while we’re doing lots of adaption and we’re going to have lots of other things that will impact, we’re aiming to get these guys to a fulfilled and rewarding life.
Megan Gilmour 10:19
Yes, that’s wonderful.
Alison Wason 10:20
One of the things I can remember somebody saying to me, really importantly, was when you’re introducing your children, put the child’s name first, not the actual disability. So, acknowledge the person, not the disability.
Megan Gilmour 10:38
Yes, which fits really nicely as a practical example of your answer to this question – not being defined by the condition,
Alison Wason 10:48
Yes, exactly.
Megan Gilmour 10:50
Rather, being the person, and this is one characteristic of their life, albeit a very major characteristic, but it’s not the only thing.
Alison, we’d love to know more about what brought you into the world of DMD. You’ve given us an insight to this. Would you like to add something to that?
Alison Wason 11:13
So yes, as I said earlier on, we were quite late to the DMD journey in terms of age. So, we lived on a farm at that stage. Jack was a very normal farm kid, rode a push bike, was outside doing everything, by five, could ride a motorbike, by eight, could drive a vehicle, could move a vehicle for us.
And when he was close on nine, he fell off a four-wheeler motorbike and broke his collarbone. And so, when he was recovering from his broken collarbone, I started to notice that he was getting up off the floor in a very different way, and I sort of looked and was like, “Oh, that looks like – that’s awkward. I now know it’s called the Gowers movement, which is very definitely something that all Duchenne children use at some point in their life. Getting up off the floor by levering up on their arms and then sort of walking their arms up their legs.
I initially thought oh that’s to do with his collarbone repairing, but then it continued on for a little while, and a couple of weeks later I noticed that he was walking on his tippy toes, and I was saying oh that’s odd.
And I happened to be going to the chiropractor a couple of days later, and my husband and I took Jack along with us, and we just said to our chiropractor, “Can you just have a look at Jack? Like he’s broken his collarbone, he’s got – I don’t know – he seems all tightened up”. And he did a few exercises and just said to us, “Look, this is not my forte. I think you need to see your GP. I think there’s some muscular dystrophy thing. There’s some dystrophy thing there happening”. And we went, okay, that’s fine and then we headed off to the GP a couple of days later and told him.
He had a look, and he was like, “Oh yes, I think there’s something happening here, we’ll send you to a paediatrician,” and he said, “Oh, but because of Jack’s age, it’s okay, he’s not going to have the bad one. It’s he’s too old to be being diagnosed with that.”
So very quickly then we went to the paediatrician in our local largest rural town, rural city, two hours from here. He again did all the same sort of tests that the chiropractor looked at. Said yes, we’re sending you to Randwick Children’s Hospital in Sydney. We went down there. They did the blood tests and everything and said to us it will be probably about six weeks until we’ve got definitive results.
And then unfortunately, but fortunately, there was an earthquake happened in New Zealand, and another lady’s blood test happened to be in a hospital that it got caught up in it, and they had to very quickly do a test for her results, and they put Jack’s results onto the same test.
So, within 10 days, we actually were called back, which was extremely quick and different. And then when we got there, the doctor saw us, and she said, “Yes, unfortunately, I need to tell you it is Duchenne muscular dystrophy”, and you could have knocked us over with a feather. Our poor GP –
Megan Gilmour 14:56
Had you heard of it?
Alison Wason 14:58
I hadn’t really heard of it – well, I had heard of it in the terms of that when we’d been at the hospital, they’d said there’re a number of different types. This is the more extreme. Becker is different. There’re other ones. Limb-Girdle is a different muscular dystrophy. We just need to work out which it is.
I probably had ruled out the bad one because our GP had said, in terms of diagnosis, because Jack’s this age, at nine, most children are diagnosed between two and five, if not earlier.
And so, the geneticists and everybody can tell us nothing as to why Jack didn’t present with more symptoms earlier. Duchennes – the signs of it and the progression of it are all very similar, but the time span of those can be different between children, so yes, we have no idea why it was later, but that was where we started.
From there, very quickly, they said to us, they told John and I, my husband, and they said, “So do you want us to talk to Jack?” And we said, “Yes, we’re being upfront. He knows there’s something that’s not right. He also is a very switched-on kid”, and so literally from the first day, he was virtually told, ‘Yes, your muscles aren’t going to work properly, and you will, you will end up in a wheelchair.”
Megan Gilmour 16:47
Big calls, big calls. Alison, couple of things. First, a question, then then well another question, but yes, an observation. Do you think Jack fell off the bike because this was coming on, or I mean, you didn’t see those other characteristics until after that. You must have done a lot of processing around this particular event, and then what come next?
Alison Wason 17:19
In hindsight, I think he did fall off it because of that. There was probably an incident a couple of months before where he slipped off a chair, when we were on holidays, and cut his head. So, I think that probably was as well.
He again, in hindsight, he had very definite calf muscles as, well, from toddlerhood, and we had checked with the doctor because they were so definite, and he was like, “No, look, he’ll grow into them”, and, again, the definite calf muscles are a sign of Duchennes.
When he did reach this diagnosis in Sydney, we did say to the doctors there, “Should we have pushed these calf muscles more then?” And they said, “No, had you come here, that was the only thing we wouldn’t have done anything either? He was walking, he was jumping, he was climbing stairs, he was riding a bike. No, we would we wouldn’t have. So, I do think that that yes, those things happen.
And I do wonder a little bit about his personality in terms of trying new things and doing physical things, while he was always active, he wasn’t one of those full-on physical boys. And I just wonder, was it? I don’t know, the chicken before the egg or the egg before the chicken?
Megan Gilmour 18:54
Yes, yes, indeed. And that’s fascinating about calf muscles. I think we’ll get into that in a later question because I’m curious about that as well, but before the next question, I just want to ask: So, were you at Randwick Children’s Hospital around 2010?
Alison Wason 19:11
Yes, spot on, 2010.
Megan Gilmour 19:13
So, we would have been in the same hospital at the same time. My son had treatment there, and between 2009 and 2011, up to 2012, we were living there or there a lot. So, it’s highly likely that we were in the hospital at the same time.
Alison Wason 19:34
At the same time. Oh, isn’t it just a small world!
Megan Gilmour 19:37
Yes. So, I hear Randwick, and then I just did the calculations. So, thank you for sharing that lived experience. I know it’s always a tough moment to restate that because it takes us back to that moment and a lot of the feelings are sitting right there alongside.
Knowing all that you know, what’s your biggest hope for kids with DMD, their families and loved ones when they’re navigating DMD?
Alison Wason 20:11
I think my biggest hope is that we just aim for that quality of life, and that it does become your new normal, and that you just want your kids to be valued and loved, and feel connected, and to be finding their interests and their passions and reach their potential. Like that, yes. I think my real biggest hope is that people begin to feel life goes on.
Megan Gilmour 20:46
Yes, and when that’s all pared back, that’s what we want for our kids. In any case, isn’t it?
Alison Wason 20:53
Yes, yes.
Megan Gilmour 20:55
And health at the forefront of it, which in this case is obviously you know a very large component, which again I think we’re going to get into in a bit more detail in a moment.
What are some of the common and perhaps frustrating public misconceptions about DMD, and how have you seen this impact families?
Alison Wason 21:15
So possibly one thing, and I didn’t really mention this earlier on. I missed it. DMD is predominantly looked at as a physical disability. Dystrophin, when it alters on the gene, or can alter in a whole different variety of spaces, and so it can end up also – depending on where the alteration is – the dystrophin can have an impact on the brain.
So sometimes children will also have learning difficulties and behaviour difficulties and things like that. And so sometimes a behaviour difficulty that’s occurring because of frustration or fear or anxiety, may be perceived as a parenting type thing or a lack of parenting, I suppose.
Yes. I know I wasn’t aware for a long time that the dystrophin could impact the learning difficulties and behaviour difficulties as well. I knew – there’s about a third of people with Duchennes often have one of those other issues that they’re dealing with, and I didn’t realise that it was associated with the dystrophin.
The other things that probably are the frustrations are that if you see a child who’s four or five and they’re possibly still being pushed in a stroller, or they’re being carried around a zoo when they’re doing something. People will often look and think, “Oh, that child’s lazy, like they’re still being carried”
Whereas they do fatigue very easily, and therefore they do need some assistance in helping out with their mobility.
The other one is that once the children do go into a wheelchair full time, or most of the time, people then wonder why they can get out of the wheelchair and still be able to walk for a small amount of time, and then you’re back in the wheelchair. So that can be a frustration.
People often think exercise will help. Like, if you exercise more, these muscles will rebuild and they will be fine.
Megan Gilmour 23:48
More protein.
Alison Wason 23:50
Yes, protein powder. So, yes. So, the reverse is the fact, you just have to say that.
They also often will, once the children are getting a bit older and they’re in secondary school and you’re looking at work experience and things, they think, “Ooh well, yep, these people have a disability. They’ll be at the sort of disability services employment things where they’re packing boxes or putting on stickers.”
And we really need to focus – these people have lots of ambitions and lots of desires. Like our son graduated with distinction from uni and lives independently in Wollongong. So yes, people need to remember that these children with a disability have real ambitions as well.
Megan Gilmour 24:44
Yes, and it’s so helpful to pull out these misconceptions, these ideas that just come out from nowhere, actually, just from an expectation or an idea or whatever. And it just proves to me once again why these conversations are so important.
Alison Wason 25:05
Yes, yes. The other one along those lines often is that because somebody is in a wheelchair, that they actually don’t have a brain or a voice. So, somebody will start to talk to the adult, and we were a bit naughty because I would then just look at Jack and say, “Would you like to answer that?”
And then once people knew, they were like, “Oh, do you mind if I ask you some questions?” And he’s like, “No, that’s fine.”
And especially if you were out, we lived in a very tiny town, and so everybody knew Jack, and he was just one of the kids. Like there was no sort of misconceptions about what he could do there. But when you were away and you had little kids look at his wheelchair, and he would often ask them, “Did they want to come up? Did they want to blow the horn? Did they want to sit on the footplates and have a ride? Things like that to try and yes normalise it a little bit. Yes,
Megan Gilmour 26:08
Play, yes.
Alison Wason 26:10
And I think in how it affects families a little bit for that question is that you are just always advocating for your child that you are yes always fighting.
Megan Gilmour 26:21
I could hear that. I could hear those adaptations in your reflections on these misconceptions and the kinds of approaches that you’d take to, you know, I suppose let people know and yes.
Alison Wason 26:39
Actually, just on that as well. One of the really hard ones that I didn’t foresee happening. I taught at the school where Jack went to school, and so when he was diagnosed, he was in the primary section of it, and I was in the secondary section. But the kids all knew who he was because it was such a small place.
And one of the girls, once he started in his wheelchair at school, one of the students came in. She says, “Oh, Mrs. Wason, Cool Jack’s got a wheelchair. How long will he have that for?” And I said, “Oh, forever. And she looked at me, and she said, “What do you mean forever?” And I said, “Well, forever,” and she just literally looked and then broke down. And she goes, “So he won’t get better”. And I was like, “Oh no, he – and so then our whole class changed completely to a lesson on what was Duchennes. And they’d seen that his walking was getting harder and all those things, but then yes, after they’re like, “Oh righto, well now we know more”, and yes,
Megan Gilmour 27:49
And then they get on with it. But I love this. I love this question, and then this realisation in the real world of teaching and learning is the concept that you get better, and that in some cases that is not the case, and then that opens up a whole world of opportunity about how that’s talked about and what that means and what it doesn’t mean, and I love that for the kids, and I think we’ll get into that more.
Alison Wason 28:23
Yes, well, I definitely couldn’t just leave it hanging there for the day.
Megan Gilmour 28:26
No, no, it’s – yes – it’s the stuff of real life.
Let’s talk about numbers. You have said this, but here’s another opportunity just to frame it up.
How many Australian children and youth are living with muscular dystrophy and DMD? So, I think muscular dystrophy will capture all of the different varieties, and you said the numbers at the front.
Alison Wason 28:56
I couldn’t actually find exact numbers for children. So, with muscular dystrophy there’s about 40,000 people in New South Wales living with a muscular dystrophy condition. In terms of Duchennes, it’s somewhere between one in 3,500 and one in 5,000 children. So, depending on which figures you’re looking at. So, I couldn’t get real age breakdowns of it.
There is a group of – there’s an organisation called the Australian Neuromuscular [Disease] Registry[https://www.australiannmdregistry.org.au ] and they are starting to collect data to help with gene therapy and clinical trials and things. So, I dare say, in the foreseeable future, there will be more stats around.
Megan Gilmour 30:04
Yes, and not having the data and not being able to find the data is, of course, data in itself, isn’t it? We hear this a lot on Live & Learn. But I think that means that it’s about between 800 and 1,150 children and young people with DMD in the school system.
Alison Wason 30:36
So yes, so I did actually look further on, because those numbers that I just gave then sort of carry from yes, your birth to your young adult. So, when I looked at the in the school system, I think there was 2.1 million boys between five and 18.
Megan Gilmour 31:04
Oh yes, that’s a good point. So, we need to scrub my numbers.
Alison Wason 31:07
Yes. So, there was 2.1 million boys in school between five and 18, and so then I just divided that out, and I got around the 450-ish mark across Australia.
Megan Gilmour 31:23
Yes, and that would make sense if we were saying roughly girls and boys 50/50.
Alison Wason 31:30
Yes, yes. It’s like one girl in – I don’t know – yes, I know of one girl, it’s very small, yes.
Megan Gilmour 31:39
Yes, so I was saying, like 800 is the lowest number, but half of those are boys, roughly.
Alison Wason 31:47
Yes, so we did well
Megan Gilmour 31:49
Well, this is what we have to do when there’s no data collected on these things: is speculate and extrapolate and calculate. It’s not the correct number, but we’re trying to get some kind of perspective.
And you’ve mentioned some of these. Is there anything else you’d like to say about what kind of complications kids have with DMD?
Alison Wason 32:14
Yes. So predominantly, the issues are movement and fatigue to start with. And then there can be, as I talked about, the learning difficulties and behaviour difficulties as well.
There are some other medical issues that happen within Duchennes, so there can be issues with the kidneys, there can be reactions to the medication. So, most of the guys are put onto steroids as a treatment. So, there can be weight gain, and there can be behaviour issues from that.
Our son – they swapped the steroid to try and counteract weight gain, and he ended up with pressure in his brain from that. So, there’s a lot of other things that can happen along the way.
Megan Gilmour 33:17
And you mentioned fatigue too.
Alison Wason 33:19
Yes, fatigue is the really big one, starting for them. Because that’s the one that comes noticeably.
Megan Gilmour 33:28
Yes, and what about mental health issues?
Alison Wason 33:32
Definitely, and so that acceptance, wanting to be like everybody else, not being able to do what your friends are doing, what your siblings are doing. Yes, big issues like they want to show that they’re competitive. So how are they going to do that? They can’t go and run around and do that.
So yes, so definitely a focus on making sure that you’re providing for them to belong to a group, to have their friends, to ensure like bullying activities and stuff aren’t happening. But yes, I think because there’s that frustration, there’s that fear, there’s that anxiety about what’s going to happen in life. Yes, all those things are a large part of it.
Megan Gilmour 34:30
Yes, and I suppose at the centre of all of that, and maybe I don’t know if it’d be more particular for Jack or not, but the grief of the life that you might think you could have had and grieving for something that you’re not able to attain.
Alison Wason 34:53
Yes, we, I shouldn’t laugh because it’s not funny –
Megan Gilmour 35:00
We have to carry some things a bit more lightly over time, don’t we?
Alison Wason 35:03
Yes, but we’ve had some funny conversations on things like that. And so, one of them, one night I was just at my wit’s end, and Jack had to wear night splints, and still like does still wears them now. And I was putting them on one night, and I was trying to adjust them so they felt comfortable, and I said I’m going to say something that’s not very mum-like, and I went, “Oh, Jack, this is a blank of a disease”, and he goes, “Ah, it’s not that bad, Mum. There could be heaps worse!”
Megan Gilmour 35:40
Oh – perspective!
Alison Wason 35:43
Okay, well, I’ll just open my eyes a little bit wider and not let the tears fall because you’re just dealing with it like that!
And then the two other examples I have is another night, we were talking about something, and I don’t even know how it came up, and I said, “I’m going to ask you an odd question. Does it ever worry you that you can’t walk? And he goes, “Mum, I never even think of it. I can’t walk. There’s no point wasting thought on it.” And I was like, “Okay, right, we’ll just get on with what we’re doing”.
And then one of the times that really sort of touched me a bit was, when his younger sister, and this is a funny thing to say, but she moved a tractor for us from near the house up to a paddock, and when she took off doing that, I said to Jack, “Does that make you feel strange or sad that you can’t do that and Abby can?” and he said, “Oh no, I’m just happy she can do it.”
So, he is one of the most practical and pragmatic people I think I know.
Megan Gilmour 37:03
And that’s because he’s had to be. Because I suppose at some point the internal reconciliation might have been, you have to choose your battles because if something’s permanent, then how long can you keep fighting with the idea of it?
Alison Wason 37:22
Yes, yes,
Megan Gilmour 37:23
You know – that is practical and pragmatic, and I don’t know that everybody could get to that place, but I imagine that this is what it sounds like to me. And what strikes me about those stories, and thank you for sharing them, because the human dimension of this is really what this is all about here on Live & Learn, because Jack’s diagnosis was relatively late. He does have a point of comparison.
Alison Wason 37:55
Yes, and the staff at Randwick Children’s, they said to us, we can’t offer you a suggestion as to which is best. We don’t know whether it’s better to have and have lost, or never to have had, and don’t know what you’re missing. And they said we just, because you can’t compare them.
Megan Gilmour 38:17
No, and in the individual case, the person doesn’t know any different, so they don’t have a point of comparison, do they? But coming back to that diagnosis, you mentioned in detail Jack’s story, you talked about Jack’s story, is there a risk of delayed diagnosis, or are most cases of DMD picked up quite easily?
Alison Wason 38:46
It just varies, because I do know the DMD therapeutic and behaviour consulting crew are working on some podcasts at the moment on Duchenne connections, I think they’re called, and they’re sharing stories of diagnoses.
And I think with very young children, they try and find something like the doctors are trying to find something that’s not quite as severe to hang the hat on before they eventually get to the Duchenne diagnosis. So, they rule out a lot of things before they do get to Duchennes.
And the CK test that they do, there has been talk of it becoming just a screening test done with children. I’m not sure where that’s up to, I just had heard that in some talk I was listening to.
So yes, it can take a while, depending on the avenues – it may be that you’re not ending up down the neuromuscular track at the hospitals, you’re ending up down the sort of gastro track or somewhere like that – that there’s other issues.
So yes, I don’t know that it’s delayed, it’s just that it sometimes takes longer because of the avenue that it follows in the medical area.
Megan Gilmour 40:26
How does it affect siblings and peers of kids with DMD? What should families, teachers be across?
Alison Wason 40:33
So, this was this was very interesting because I actually talked to Jack’s 22-year-old sister about this as well. So, I think one of the things, and I’m just going to start in general, so I think the peer stuff is that we really need to try as much as possible, from our playgroup times, our preschool, our going into kindergarten, our moving through schools, to try and make all the children in those areas that the boys are dealing with, aware of what’s going on.
And there’s some fantastic like young kids’ story books about why so and so’s muscles are not working properly and why are they in a wheelchair and things like that. So, I think that honesty and that being genuine about what it is.
Going back to one of the other things, like what do people see as a common myth? Sometimes some kids think it’s catching. So, making children aware that it’s not catching, that it is something genetic that’s gone wrong.
Megan Gilmour 41:47
That it’s not contagious.
Alison Wason 41:48
Yes, yes. It’s not contagious. It can be hereditary, like it can carry through from the mothers. It also can be just an ‘oops’, and ours is just an ‘oops’, so yes, I don’t carry it. But other people I know whose sons have Duchennes, they are a carrier on their X chromosomes.
So, I think that the awareness of peers is really important, and finding those things that your child likes and can do and can participate with the others at school.
So, it may be if they are getting tired that there’s some passive activities that they can go and do; some play doh if they’re young, some card games if they’re in primary, some other sort of activities they can do if they can’t be running around while they’re out of the wheelchair. Then also like adapting so that they can participate in things. So maybe a lighter cricket bat so they can stay with the cricket game, a smaller football, a lighter ball that they can use.
So, the peers are a really big, important part, and finding that drive is so important, and sometimes so hard for kids to find their group that they can fit with.
In terms of siblings, I think the time out taken for appointments and diagnosis and things is very, does take a lot of time. I felt a bit guilty about that. The frustration that maybe their sibling can’t join in the games and things that they want to do. If there’s only one other, like in our family, if you’re going to a theme park, you don’t have a sibling to do it with.
You’ve got to make sure that you’re giving equitable chores for them to do, things like that. Also, sometimes those siblings are having to attend to personal care activities for their person with a disability. We’d have times where I was busy, John was at work, Abby would have to undertake helping Jack go to the toilet and things. So, they’re different things that you are taking on as a teenager that you normally wouldn’t have to do.
Interestingly, when I spoke to her about it, all those things that she and I had thought and other people had thought, that she turned them into sort of positive considerations for later on. That they made you more mature. That you found you could adapt to situations. That you appreciated differences in people, that you, yes, understood that sometimes things were a priority, and it wasn’t meaning to leave you out, it was just that that was a priority.
So, in a family without a child without a disability, it might be that one of the children is an elite sports person, so there’s more time spent on that, that one of the children is getting their L plates, so there’s more time spent on that at the time.
And interestingly, all the older siblings that I know that have brothers with Duchennes have gone into healthcare as their employment or their training.
Megan Gilmour 45:26
Yes, I see that too. I have seen that in my in the world that I lived in – into the caring professions.
Alison Wason 45:34
Yes. Yes. Interesting. And probably one of the medical things that it does mean for siblings is, even in our case when I wasn’t a carrier, they would generally screen the girls as they become teenagers, so that if they are looking at having families, that they can see whether they’re a carrier as well.
Megan Gilmour 45:58
Yes. I’d like to reflect something back to you, given a couple of answers that you’ve given. Is that what surprises you about Jack’s answers, your daughter has also given very similar positive framed answers, and I think that comes from you. I think that comes from your family and how you’ve handled this, because both of your children have turned what could be adversity into extraordinarily positive human characteristics for themselves.
And so, I know this has to come from your family environment and how you’ve approached it with great gusto and positivity, and doing the best that you can with what you have, in order for people to have the opportunities and life that they can live. And that’s really coming through strong for me, so I just wanted to share that with you.
Alison Wason 47:02
Oh, thank you. The other thing, just in terms of the siblings, I’ve once read this quote, and I’ve heard somebody else speak about it on another podcast I’ve listened to about Duchennes. That, if you want to work out how to treat a person with a disability, watch what their siblings do.
And this was really interesting, the person who was talking about it, was they visited a house where a child had Duchennes, and their child had Duchennes, and one of the brothers was pushing another one up against the lounge with their wheelchair and having an argument about something. And she was like, “Oh, it’s just normal”, and you’re like, “Yes, it is just normal”.
Megan Gilmour 47:40
Yes, and that normality is key to all of this as well, and you raised that at the beginning. Yes, it’s often that we’re going into the traumatic effects that siblings experience, or that the person experiencing the health condition, health situation experiences.
I’m really struck by Abby’s and your feedback on this because it’s something we probably need to note to pay more attention to drawing out, what are the positive strengths-based attributes that come out of these experiences that can be highlighted as well as the challenges and the experience of challenge and difficulty. I think it’s really struck me.
So, we’ve talked about this population of school age children, we think of DMD, we just don’t know. Do children and young people with DMD currently miss a lot of school, and why?
Alison Wason 48:53
So again, it’s really, really varied. So, some do miss a lot of school because of fatigue, because of appointments or medical issues that might have arisen, where they’re having issues with kidneys or things like that.
And when I say a lot of school, I’m not saying I shouldn’t generalise, but not weeks on end, but spasmodic bits. So, appointments, if they’ve got allied health appointments, so they’ve got some physio and OT and speechies, if they’ve got some learning difficulties, things like that.
In our case, Jack missed very little school. He missed a couple of trips to Sydney every six months, so he would miss probably I’m going to say 10 days a year, if that, and fatigue wasn’t a huge issue for him.
So, it’s just a really really varied thing on the child. Sometimes if there’s a fatigue, schools will look at a partial enrolment, or not a partial enrolment, a flexible enrolment, where they might say, “Okay, well, this is happening at this time. You’ve got two appointments in the morning. How about you have the afternoon at home? You can have a catch-up day and do something there”.
So, yes, more so the issues I think in terms of missing out in school is what they can be included into, and so while they mightn’t be missing technically from school, what happens when it’s a sports carnival? Can they go on the excursion? Can they go on the camp? How do they participate in the science lesson? How do they work in the food tech room? How does industrial arts happen? What happens at PE classes? So, I think those things are probably more a varying factor in schooling than the actual absences.
Megan Gilmour 51:01
And so, what we’re talking about here is missing days or hours of school because you’re not physically there, or missing school while you’re there, and what you might be missing out on if adjustments aren’t made to enable you to participate in some way.
And this leads us to the question of, what are the critical times in a kid’s life living with DMD. I’ll ask that again. What are the critical times for a kid with DMD in their school life, and what should families and schools be prepared for at different times?
Alison Wason 51:40
So, I think there’s two critical times. There’re the two definitions of critical times. There’re the transitions between periods of schooling, so from your preschool to infants and primary, from your infants and primary to high school, and from high school then on to what you’re going to do afterwards.
And then there’s the transitions that happen because of your mobility issues. So, if you’re in a manual wheelchair for a small amount of the time, if you’re in a power chair for a little bit of the time, if you’re in a power chair full time, how are those transitions and things going to be worked out?
And really importantly, an executive at the school I worked at had this great saying, that you want to be looking at it, not for it. And I think in terms of schools and families, that really works. So, we parents need to be talking to schools as early as possible. Communication is a really important thing.
Getting the knowledge into schools about Duchennes and the progressiveness of it, and while you can’t say in five years’ time this is going to happen, you are going to be able to say that at some point in this child’s schooling they will end up in a power wheelchair.
So that communication between your allied health professionals, your family, and your school, possibly the teachers and the executive, are all really important in making sure that the adaptions are available in the school before the child needs them, or that you’re not waiting and they’re missing out.
So, it’s really easy to get tables that will adjust to heights for wheelchairs, there can be one of those in every classroom. It’s really easy to make sure that there’s access to either ground floor classrooms, or that you’ve got property people looking at ramping and things like that.
That we’ve got these students having individual learning plans – that’s what they’re called in New South Wales – but some form of educational plan. So, really, from the start of school, parents need to be communicating and be proactive rather than reactive, so that we can say, “All right, this excursion’s going on. Are you able to provide support with a teacher’s aide going or a school support officer going, or would you like a family member to go for that half day?” Or “how’s the transport going to happen?”
And often, I think schools are very willing if parents have some suggestions. Generally, schools are willing to listen to them and take them on because they often just haven’t thought. Or if you’re happy to go along and say, “I can show you how this will work, because they need to think about, yes how toileting is going to happen if you’re away overnight, how showering is going to happen, yes.
Megan Gilmour 55:04
I love that, Alison. Alison – being a teacher – has picked up some of my job here, which was fantastic in talking about individual learning plans or personal learning plans. The Disability Standards for Education is a really powerful regulation that schools, no matter what sector they’re from, or whatever age group, or across states and territories, it’s the national regulation for every education provider, early childhood, through to schools, through to post school university and TAFE for tertiary vocational education.
So, those adjustments and adaptions or adaptations or whatever are available through the Standards in that plan, and that’s really going to be coupled with, as you said – and I love that – come with what you need and be proactive about it.
And it’s the advocacy that you talked about to get the best life, to get the best level of participation, and all the things. You know, we’re bookending here to what you said at the beginning; how do you make way, and help the school make way, for the things that are going to enable that young person to do the most they can with what they have, and also to be able to strive for their potential on equal terms to others.
We talked about access too, and that’s why MissingSchool – you talk about ramping – and we compare telepresence or being able to join class through a two-way digital connection if you can’t physically attend, with today’s ramp of access to the classroom,
Alison Wason 57:03
Yes
Megan Gilmour 57:03
And so, it was just wonderful to hear you call it ramping as well because I love the – you know – rather than simply saying wheelchair ramps, because it’s the way in, that’s what we’re talking about.
Alison Wason 57:21
And interestingly, so the school that Jack went to had ramps in before he needed them, and there was another student about 10 years before who ramps went in for. But when they went in, the comments from mums with prams and grandparents for accessibility, it was just like, ”Oh, this is so good, and you’re just like, “Why is this just not standard everywhere?”
Megan Gilmour 57:45
This is exactly it, and that’s why today’s buildings – that is the consideration of access, right from the get-go at the beginning. It’s not an add-on later. And often people won’t think about the pram. I mean, railway stations and getting into toilets, and you’ve got a pram, and you know.
I was only just saying this on a call before this one. Design for difference. Design for the person who’s having the most challenge, and everyone wins. So yes, it’s that principle.
Alison Wason 58:33
Yes,
Megan Gilmour 58:34
We’d love for schools and teachers to just know this, but the fact is, it is parents, and it is typically mothers who are doing this work. And not to be shy about it, to know that schools, once they have the information, can do more with that than they can without the information, and that the Standards are there to enable some kind of equality of opportunity or even the playing field.
Alison Wason 59:10
Yes,
Megan Gilmour 59:12
So that brings us to this big question, I guess, about school life challenges, and we’ve talked about the biggest challenges and vulnerabilities facing kids with DMD at school, and you’ve been so generous with your knowledge and so clear in communicating all of this to us, so we understand.
What’s happening now in schools to address these challenges and vulnerabilities? Is it enough? And what do you think schools and governments currently don’t know or don’t do, and how can we remedy that?
Alison Wason 59:49
So, I’m just going to go back to one thing you said then. If we plan for the worst-case scenario, then everybody wins.
So, my thought with this one was that, really, the general support we need to be giving every kid in terms of being accepted, reaching their potential, finding their tribe. If we’re working on that for every kid, then we’re going to get our Duchenne kids in there as well, because of their vulnerability – and that might be like, there could be a group of bullies, you’re finding it hard to find a friend group.
There’s so many other kids in the schools who are in exactly the same situation, and sometimes for them it’s a bit harder because theirs is not even visible, whereas the boys with Duchennes are in a wheelchair, it’s a visible disability that people can go “Okay, what are the challenges for them?”
So, I think holistically, things are improving. Most schools have some wellbeing program in there. Most schools are targeting sort of different interests within the schools. So, we’ve got maybe clubs or lunch activities that focus on different groups. We’re not saying everybody needs to be out and play sport at lunchtime. We’ve got the chess club happening, or the uno happening, or things like that.
Megan Gilmour 1:01:25
Something for everyone.
Alison Wason 1:01:25
Yes, something for everyone. I do think that training for schools once they know they’ve got a Duchenne student coming into it is paramount. We had some staff from Sydney Children’s come out, and they were absolutely fantastic. I stepped aside – again I was working at the school – I didn’t go to the meeting because I said a) I know what they’re going to talk about, and b) it means you guys can ask every question you want and not worry about me being there.
So they did some fantastic stuff. As we mentioned earlier, the Save Our Sons have a great educational resource that has a lot of practical tips in it. Muscular Dystrophy New South Wales have a new diagnosis booklet out, and again, it’s got heaps of suggestions for schools. The DMD behaviour, therapeutic and behaviour consulting, they actually work in schools. They’re based in South Australia, but they work across the states. So, there are so many, and Duchenne Australia also have educational packages on there.
So, there are so many resources that parents could print off and even take to schools or send the links so that you can say, “Look, here are some things, here’s some pointers”, because we do know that schools are busy places and they might end up with things down the list a bit and not looking at it.
But if you can go in, again, with some proactive information, there’s a lot of resources out there to make it so much easier that we’re looking at this yes physical disability that we may have some learning disabilities happening about it.
There’s also, and I didn’t mention it earlier, and I’ve only done a small amount of reading on it, but a tolerance level for lots of Duchenne guys because of their fatigue levels and things that some of the work they do in schools, they may not be able to sustain that for as long as other students.
So, there’s a lot of information around, about how to make school life really inclusive for students, and yes, we just need to make people aware of it.
Megan Gilmour 1:04:02
Yes, I love that. That’s such good foundation sitting right there.
Alison Wason 1:04:08
The other thing, once the students get up a bit into school, if students are going on into those upper years of secondary education, maybe look at what special provisions are available. So, in terms of the student having a scribe or extra time in exams, because all those things take time, and again, you want to be able to provide them for your child.
Megan Gilmour 1:04:36
Yes, that’s fantastic. We’re coming to the close now, and I’d like to just check in with you on whether there’s anything else we should be asking about school quality of life and DMD.
And maybe, yes, I’d like to circle back where we started, to say while we’re talking about DMD, muscular dystrophy, which is a much broader category, obviously higher numbers of people in school, that these issues that we’re talking about may differ at the margins, but there’s quite a lot of commonality here, and I think that’s a really important point. Would you like to add anything to what we’ve talked about?
Alison Wason 1:05:26
So, I just think in summing up, I think if we just look at the whole person, so that we need to work out what do we need to physically make work for the people, what’s going to make the guys feel safe and secure? What can they then achieve? What’s going to give them their self-acceptance, and provide for the whole person, other than just looking that there’s a physical disability
And as you were saying, muscular dystrophy, there’s going to be lots of these things that we’ve spoken about are going to be an impact on or in all the different types of muscular dystrophies.
Megan Gilmour 1:06:15
Yes. So, call to action, Alison. What’s your call to action for DMD in seven words or less?
Alison Wason 1:06:26
Okay, I’ve been I’ve been cheeky. I’ve got two. So, my first one is find a cure.
Megan Gilmour 1:06:32
Love that.
Alison Wason 1:06:34
So that’s my first one, and my second one I think it’s nearly seven words, but that they reach their potential and live a rewarding life.
Megan Gilmour 1:06:43
Amazing! Look, you’ve just been incredibly knowledgeable and generous with your time and with your feedback to us, and in sharing with us your life experience and so much about this condition, so that we can understand more and have more clarity about what it is, overcoming some of those misconceptions, and also importantly, what does it mean for school life, and what can we do to make that work?
And I do want to just echo back to the fact that I can see that you’ve been an incredibly positive mother and role model for your kids, for them to come back with such incredible observations and reflections about their life journey and what it’s given them, not what it’s taken away, and that’s really that’s really struck me in our conversation.
So, I want to shout out to Muscular Dystrophy New South Wales, Save Our Sons Duchenne Foundation, Duchenne Australia, and DMD Therapeutic and Behavioural Consulting. You can find these organisations on the web. Go there, give your support. Find out more information if you need it, and the good people out there doing this work will be right there to support that and walk that journey with the people who need it. And that’s what I love about this community work.
I also want to make a shout out to women because women are out there doing a lot of the heavy lifting at the intersection of both medical conditions and that kind of care, and also in our schools as well.
So, thank you for joining me today, Alison. It’s been an absolute pleasure.
Alison Wason 1:08:43
Thank you.
Megan Gilmour 1:08:46
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 [https://missingschool.org.au] because every dollar makes a difference.
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