The Body Sphere, Caged in Chaos
Everyone has their moments of clumsiness – then there are those who are dyspraxic. If you can’t use a tin opener, if you can’t sit on a stool without falling off or pour a drink without spilling it, have trouble with handwriting and you’re hopeless at team sport, you may have motor dyspraxia. Tips for negotiating the world from a young woman with severe motor dyspraxia, and an occupational therapist who specialises in working with children.
Plus, for children with good motor skills – what’s the best way to learn the physical skills required of a sport?
Amanda Smith: Today in The Body Sphere, caged in chaos:
Kathy Clarkson: Go and clean your bedroom. Seems simple enough to us but for a child with dyspraxia it’s completely overwhelming. Where do I start?
Victoria Biggs: I once went out without a skirt on, ‘cos I just forgot. And that’s the kind of thing that happens to me a lot. I’m very disorganised, very scatty, very erratic.
Amanda Smith: But she’s also got a degree in English literature from Cambridge, and when she was 16 wrote an award winning book called Caged in Chaos.
Now, you might think you can be a bit uncoordinated or disorganised or clumsy at times, then there’s people with dyspraxia, such as Victoria Biggs. Victoria is now 26.
Victoria Biggs: The hallmarks of dyspraxia are coordination and balance problems. As a child that affected me in all sorts of ways, most obviously in PE lessons at school. Recently I met up with an old classmate from primary school and we were reminiscing about school days and he was saying, ‘Oh, you used to run like a baby horse running for the first time.’ And that is very much how I move. You can basically see there’s something not quite right with me from the way I walk. I have difficulty going up stairs and performing tasks like using a knife and fork. Sometimes when I eat or drink I miss my mouth because I don’t have the coordination, the depth perception.
And it affects things like dressing. I have a very humiliating memory of primary school, of going out after PE class half-dressed with my shorts on inside out and everyone laughing at me. That was when I was about 9 or 10. Of course things like handwriting are very difficult because I struggle to coordinate the pen. Even things like sitting on a chair. Sometimes if I try to move in my chair I can lose my balance and end up teetering onto the floor.
Crossing roads, I have no depth perception, no spatial perception, which means that one of my friends also said very recently, ‘I’m not sure it’s safe for you to be alive, how have you managed it for so long?’ And getting lost as well, because people with dyspraxia we have very poor spatial understanding, spatial perception. With little dyspraxic children you see it in things like they can’t put together jigsaws. But that has a very serious real-life application, because it means we can’t navigate streets, work out right from left, where we’re going. There’s no picture in my head, which basically means I still get lost in my own home town.
Amanda Smith: So all these things still apply as much now as when you were a teenager or a child?
Victoria Biggs: Some do and some don’t. The physical aspects of dyspraxia are easier to deal with now because I don’t have to, say, wear a school uniform with horrible fiddly buttons and a tie, and I don’t have to do PE and I don’t have people forcing me to hand-write, I can type more now…
Amanda Smith: Isn’t growing up nice!
Victoria Biggs: Yes, it is, definitely. No more hockey!
Amanda Smith: There’s also, in that mix of things, there’s some difficulty in I think reading facial expressions and body language?
Victoria Biggs: Yes, that’s true. Faces are very foreign to me. I can’t tell what people are meaning or thinking just from their face. Like, I may struggle to tell if someone’s angry, or to work out the dynamics of a social situation. My visual memory is affected here as well. Sometimes I have acute trouble recognising faces, to the point where as a child I remember being lost on a beach and being absolutely terrified because I had no way to identify my parents from this crowd of people in front of me.
Amanda Smith: And more from Victoria Biggs, the author of Caged in Chaos, later here in The Body Sphere.
Kathy Clarkson is an occupational therapist. She’s been working with children with dyspraxia for over 20 years, or as it used to be called, a little more baldly, ‘Clumsy Child Syndrome’
Kathy Clarkson: Yes, and that’s one of the things that people are frequently describing them as, a clumsy kid.
Amanda Smith: It’s not because the muscles themselves are underdeveloped, it’s messages from the brain to the body.
Kathy Clarkson: Yes. It’s a process called sensory integration, where it’s the way the brain takes in all the information from the environment and from inside the body itself and puts it all together. So the information can be coming in all right, and the muscles can be there ready to respond, but the signals get crossed.
Amanda Smith: So what causes it?
Kathy Clarkson: There’s some things that we know cause dyspraxia. There’s some things that as a clinician I expect a heightened risk. I see a higher rate of children with dyspraxia when mums have had gestational diabetes. I also see a much higher rate of dyspraxia when kids are born early. And that’s not severe prematurity, that’s even just three and four weeks earlier, because a lot of that final coordination of brain development happens in those last few weeks of gestation. So I’m more likely to see a child with dyspraxia that’s been born a little bit early. For some kids though, we have no idea.
Amanda Smith: So what’s the incidence of it?
Kathy Clarkson: Twenty years ago we probably would have been talking 5% of the population. We’re seeing an increase, and part of that is because of the changes in the play styles of kids, that they’re not getting the opportunities to explore their environment quite as effectively as we used to.
Amanda Smith: So explain more to me why changes in play are contributing to higher incidence.
Kathy Clarkson: The brain’s very dependent on vestibular and proprioceptive input when it comes to planning. I’ll just describe what they are. Vestibular processing is the way in which the brain processes information about movement. So, how we move our bodies, our relationship to gravity, information about speed, those sorts of aspects. That’s called vestibular processing.
Proprioceptive processing, we have receptors in all our joints and muscles that tell the body about where it is in space. So that’s why we can move without our eyes helping, and it also provides a lot of information about the pressure we’re using and the amount of force we’re exerting in certain situations. That information and that processing occurs in developmental play through lots of moving, climbing, rough-and-tumble sorts of plays.
Play styles are moving to sedentary. They’re very visual and they’re very auditory based. The kids aren’t getting out, climbing trees and playing on play equipment and doing lots of moving as their predominant force. And so without a lot of those aspects to play in early development, it’s more likely that we’re going to see kids having difficulties integrating all that different information to go through that praxis process.
Amanda Smith: So how do you diagnose it?
Kathy Clarkson: Say, for example, getting them to draw. A very simple task, but what I can gauge from that is all the motor skills and hand development aspects in their hands. I can look at…
Amanda Smith: Like whether they can hold a crayon, how do they hold it, et cetera…
Kathy Clarkson: Even more refined than that. For example, to get what we typically think of as a tripod grasp with that three-fingered grasp that we expect kids to be able to use when they hand-write, in order to get that they need to have stability at the wrist, they need to have an arched palm, so a curved palm, they need to be able to divide the hand, which means you have to be able to tuck the little and ring fingers into the hand while the other fingers do all the work. They need to have stability within their thumb. So I can look at the way a child holds the crayon…so yes, they may have a tripod, or yes they may be able to hold it, but I can look at very specific aspects to that to look at that underlying hand development.
Amanda Smith: As you describe it, you realise how incredibly complex that simple action is.
Kathy Clarkson: It is. So often kids will get referred to us because they’re just having difficulties with handwriting. But when you look at all the aspects that go into that, from their core stability and shoulder stability to the motor planning to the way their eyes interpret the information, there’s so much goes into that handwriting process that it’s rarely an issue of ‘they need to practice.’
Amanda Smith: All right, so what do you do with those kids, then, once you’ve established that they do have a problem with dyspraxia? Are there therapies that can help improve their motor skills, their coordination, their balance, their sensory perception?
Kathy Clarkson: Usually we get movement occurring in lots of different dimensions. So, most of our time we spend our life upright, okay, but the vestibular system’s designed to process information in all different planes of movement, 45 degrees, upside-down, up the right way, all those sorts of things. So we do lots of different movement activities on suspended equipment, swings, moveable objects. Lots of equipment that is unstable, so that the body has to constantly adjust and re-plan the movements every time they do it.
So we’d be looking at that vestibular processing. We’d be looking at proprioception, that body awareness component, and giving them lots of activities where they have to use that sense without their other senses compensating for it. So, often kids who have proprioceptive difficulties will compensate significantly with their eyes. But get them to close their eyes and try and move their body and they don’t understand where they are in space. So we get them to do lots of activities with resistance but without their eyes helping.
If you look at my clinic, you look at the therapy gym, it’s like a big play centre. It’s full of swings and flying foxes and unstable surfaces, big air mats to climb over and things like that. And then it’s all play-based. Kids develop if they’re having fun.
So that’s the first aspect. And then we can look at that planning component. And the planning component, the more a child can be presented with novel activities or a new task, the more their brain has to do that planning process. So obstacle courses are a great one, you know, with all the suspended equipment, being able to move from a movable object to a stable object. That sort of thing requires a lot of planning that they normally wouldn’t be presented to in their day-to-day activities.
So that’s how we’d sort of treat or remediate the underlying issues, but then we need to look at function, and how we perhaps compensate for those difficulties in their everyday life.
Amanda Smith: So give me an example.
Kathy Clarkson: Go and clean your bedroom. Seems simple enough to us as adults, but for a child with dyspraxia it’s completely overwhelming. Where do I start? How do I work out what to do first and how do I move through those steps? So, if we can help them with that breakdown of the steps then it becomes less overwhelming, and they can move through it. And all of a sudden it takes a big, complex task into individual steps that they can achieve. Whereas often if we don’t understand that breakdown in that planning process it can just be a fight, you know, you’re just being lazy, you don’t want to do it.
Amanda Smith: Occupational therapist, Kathy Clarkson.
And this is The Body Sphere, Amanda Smith with you, talking about dyspraxia, a condition that affects your motor planning and coordination.
As a child, Victoria Biggs, the author of Caged in Chaos, was dubbed lazy.
Victoria Biggs: Yes, that’s basically been how it was since I first started school, because I have a very spiky profile intellectually. I’m very capable at some things, for example I could read fluently by the time I was three. I remember being in primary school and the teaching assistant pointed to a picture on the wall and she said, ‘What’s that?’ And she was asking what was in the picture but it had been labelled, and the word ‘evaporation’ was there and I read it, ‘evaporation’. And the teaching assistant nearly fell over backwards she was so shocked. And from then on I had a reputation for being very gifted, which meant that when I couldn’t do things like hold a pen, they decided I just wasn’t trying. And it was like this as I grew up. I was very used to hearing things like, ‘You could do this if only you tried. You just don’t think it’s worth your time. You’re lazy.’
Amanda Smith: Now, when you wrote this book you were at secondary school, at boarding school, and you’d only been diagnosed with dyspraxia a year before, I think, when you were 15. What did having a name for all these things that you were struggling with mean for you?
Victoria Biggs: It was brilliant. It was a revelation. I had a very late diagnosis because as a child my family’s jobs meant we were constantly moving around overseas, and in countries where dyspraxia isn’t widely known. And I think I went to about six different schools in total. And in the end, to give me some stability I was enrolled in this boarding school. And the house mistress there picked up on the dyspraxia within two or three days of me arriving, because she has a lot of expertise in this. It just felt like such a huge relief, to know that actually I’m not stupid, I’m not crazy. There’s a name for this pattern of difficulties.
Amanda Smith: You had had an inkling of something beforehand though, that was actually via your love of reading I think – from literature. Tell me about when you read Jane Eyre.
Victoria Biggs: Jane Eyre has a character, Helen Burns, whom I identified very strongly with as a child because she talks about being disorganised, about being in trouble with teachers, about not liking gardening or other physical activities. She always has her head in a book, she has a very weak attention span. And as a child I always related very much to this character. But when I was diagnosed with dyspraxia, it took on a whole new meaning.
A few days after my diagnosis I was looking it up online and I found an article called ‘Fiction’s First Dyspraxic’. And it’s all about how Helen Burns is based very closely on Charlotte Bronte’s younger sister Maria, who died. And Maria had a very typical dyspraxic profile. And Helen’s experiences at school are modelled very, very closely on Maria’s, who was bullied and who had huge problems despite being very intelligent. But she couldn’t write.
Amanda Smith: And her sewing was terrible, which was not good for a young lady of that era.
Victoria Biggs: Definitely not.
Amanda Smith: Now you mentioned Maria Bronte was bullied. All those things you’ve talked about are, I guess, a recipe for a school kid having no friends and being bullied. In your case?
Victoria Biggs: Yes, bullying was very much a part of my school life until I was about 13 or 14 when things got easier. Before that it was absolutely horrible, because dyspraxia…they call it an invisible disability but it’s not actually that invisible. People can see that you walk funny, they can see that sometimes your facial expressions look funny. And so I used to have people imitating that. I used to have people calling me names, they label you ‘spastic’ or ‘retard’ or ‘freak’. It’s a lot, lot nicer to be called dyspraxic than any of that.
Amanda Smith: Although Victoria Biggs is okay about being called dyspraxic, the occupational therapist Kathy Clarkson doesn’t tend to use the term with the children and parents she’s seeing. One of the challenges with these children as they get older, given their co-ordination problems, is for them to be physically active.
Kathy Clarkson: Yes, and that’s often where that…if you allow that label to become the crutch of ‘I can’t do that’ or ‘I find those movement tasks too hard so I’m not going to try because I have dyspraxia’. So, often one of the consequences of a child avoiding all those movement things is they end up with really poor shoulder stability and core stability, they don’t end up with enough postural control. So we have to go back and treat those issues, those muscle issues, separately. The average child these days doesn’t have enough core stability, so for a child who has motor planning issues where they’re going to have difficulties executing their plans anyway, all of those motor stability issues are even more important for those kids.
So it does mean that we have to find ways to incorporate a lot of those muscle building and motor activities into their day but still make them feel like they’re succeeding. Often they’re not group sports because there’s too much planning when you have to try and interact with another person at the same time, but more individual sports like tennis, rock climbing, bike riding, all those sorts of things are very achievable for people with motor dyspraxia. But ongoing they’re probably still likely to have some difficulties with some new tasks and when they’re presented with new tasks in adult years, and also with those organisational elements. That final organisational step is often the one that continues.
Amanda Smith: And that’s the case for Victoria Biggs, although she’s found ways to be physically active.
Victoria Biggs: Yes I’ve always really enjoyed swimming, and this is actually quite a good sport for dyspraxic people, because it’s not team. One of the hardest things I think for dyspraxic teenagers or children is that when you’re doing school sports you’re on a team and you’re always the last one to be picked, and often your team will moan when they get you, ‘Oh why do we have to have her? Can’t hit the ball, can’t do anything right.’ Whereas something like swimming takes that pressure off because it doesn’t matter if I look like a drowning dog or whatever in the water, I can just go at my own pace and be happy and enjoy it. And I will actually try most things. I’ve tried dance classes. That was a bit of a disaster. I’m never going to be a premier dancer it has to be said, but at least I try.
And all this is about learning to feel at home in my body. I have some quite obvious limitations but I do think it’s important to try things. It can be very hard for dyspraxic people to do this, especially after the experiences of school. I know dyspraxic adults who are really, really very hostile and averse to any form of exercise because they’re sure that people are going to be laughing at them. And it’s hard. Sometimes it can also be embarrassing. I was once asked to leave a restaurant because I fell over as I was coming in and they assumed I was drunk. I don’t even drink, and I was trying to explain that no I’m not drunk, I’m disabled. But they wouldn’t believe me. And so, when you’re in a gym or a sports hall or whatever, if you have these problems then you will feel very self-conscious. It can be difficult to push past that but it’s definitely worth it.
Amanda Smith: Well, since finishing school you went to university, to Cambridge, you worked, you’re now back at university doing a PhD. How are you nowadays in the world?
Victoria Biggs: I am still very obviously dyspraxic. But I feel less pressured now and the world no longer feels quite such a daunting and hostile place. I struggle to live independently, so I have a support worker who helps me with things like cooking and not setting fire to the kitchen and that kind of thing. All the things that I would find difficult with the problems I have. And there’s great acceptance from my colleagues at university. The other day I was stuck in my coat. I couldn’t undo the zip and so another PhD student had to come and help get me out of it. But I don’t feel self-conscious about that anymore. I feel very accepted where I am.
Amanda Smith: And Victoria Biggs is the author of Caged in Chaos: A Dyspraxic Guide to Breaking Free, originally written when Vicki was 16 (she’s now 26) and written for teenagers. And there’s an updated edition of it that comes out next month, details are on The Body Sphere website.
You also heard from Kathy Clarkson, senior occupational therapist and director of Melbourne Occupational Therapy Associates.
Author, Caged in Chaos
Senior occupational therapist and director, Melbourne Occupational Therapy Associates
Title Caged in Chaos
Author Victoria Biggs
PublisherJessica Kingsley Publishers (2014)ISBN978 1 84905 474 4
Description A dyspraxic guide to breaking free.Updated edition.