What do Emily Bronte, Richard Branson, David Bailey and Daniel Radcliffe have in common, aside from being mentioned in the first sentence of this article in a shameless attempt to get your attention?
They all suffer from a condition called dyspraxia.
Now, it’s entirely possible, if you’ve not come across this condition before, that you’re thinking “Dyspraxia? Isn’t that something to do with dyslexia? Or autism?”
In the past, I’ve come across that line before – some people believe dyspraxia is a combination of dyslexia and autism – and they’d be both right and wrong at the same time. It does have links to both conditions, yet sufferers -and specialists – have their own specific interpretation of what dyspraxia impacts in their life.
The best description of dyspraxia I’ve found is from a website I recently came across which says that “dyspraxia … prevents messages to and from the brain being transmitted properly.”
But what does that mean?
Messages? What messages? And what does it mean in every day terms for people who have the condition – and their family and friends, who live with a person who has it?
Put simply, dyspraxia is classed as an “invisible” disability, because – to the outside world, at least – a sufferer can appear “normal”. Please understand, I hate that expression – “normal” – because it can’t cover the wide range of brilliantly fascinating (and eccentric!) people that make up humanity, but it’ll have to do just for the moment.
Someone with that label, “dyspraxic”, can be a severe or mild sufferer, and have a multitude of symptoms – or just a few. The “messages” that are prevented from getting to the brain are chemical and, in the majority of people, help them function in their day-to-day lives. When they stop working, though, it causes dyspraxia, and its commons symptoms can be; clumsiness, difficulty with writing and talking, awkward walking, short-term memory problems and a tendency to just be known as “clumsy” or “shy.” Some other, perhaps lesser-known symptoms include noise sensitivity, poor concentration and difficulty with social situations.
I think it’s about time that I tell you something else at this point; I suffer from all of those symptoms, to a greater or lesser extent, because – like Bronte, Branson and the others – I’m dyspraxic too.
I’ve spent a lot of time reading about dyspraxia, theories about its causes, management of its effects, etc, but until recently, I’ve struggled to find many studies of how people with the condition actually deal with it – and how people of my age group dealt with it growing up, as it wasn’t something really understood back in the 1980’s and early 90’s. That’s the real point of this article – I want to talk to you about how I’ve dealt with it in my life, from the point of view of someone who didn’t really understand much about it for many years, and also what it’s like to live with the condition.
I was first diagnosed as dyspraxic at 15 and it was like a light was suddenly switched on. Suddenly, I wasn’t just “clumsy” or “awkward”; it made sense why I felt a bit “different” to my classmates. I had always been geeky and socially awkward, but that was just … well, me, the way I was. Suddenly, there was a bigger picture, this “thing” casually mentioned to me by one of my teachers, who was surprised I didn’t already know.
But, of course, how could I know if nobody told me?
Remember, this was back in the day before broadband (I shudder to think about that now) or even Google (Ask Jeeves, anyone?) – dial-up internet didn’t really tolerate complex interrogations anyway, and there wasn’t exactly a plethora of material to call on when you could login.
I finally laid my hands on a book imaginatively titled “Dyspraxia” by Dr Amanda Kirby, and it was as if she were writing about me – that she had somehow been watching me grow up and written the book based on my experiences. It was (and still is) a brilliant book, but something began to coalesce in my mind as I continued reading it – this is a disability, isn’t it?
Bizarrely, it hadn’t occurred to me until that moment to consider what I’d got as a disability – or any other kind of label. I just wanted to understand what it was I had, so I could deal with it … not to be defined by it. I was terrified at the thought of being labelled as a kid with a disability – when you’re at school, that’s the last thing you need. So, I kept it to myself a lot of the time – a guilty secret. However, it was still an amazing feeling; to reach the age of 16 and finally understand that there was a name for the things I was going through, not so I could be limited by that label, but so I could control it. Even then, I became determined that I wanted to live my life without being hampered by this condition, which made me even more frustrated by the lack of information around.
However, after reading Dr Kirby’s book, I finally understood – for the first time – that my severe clumsiness and atrocious handwriting were down to something more than just “lack of effort”; that my inability to concentrate when there was lots of noise wasn’t just due to me being easily distracted; and that my social awkwardness was down to more than just being shy or lazy.
It’s a difficult thing to try and describe, to be able to look over at a “normal” person (there’s that word again – I won’t use it a third time, I promise) and wonder, “Why aren’t they as clumsy as me? Why am I tripping over my feet – and my words – every other minute? Why aren’t they?” I used to dread speaking in front of the class, because I could never go more a few sentences without stumbling over a cumbersome word – even now, that still sometimes happens, although years of working with the public have, mercifully, helped me to curb its worst excesses. I can sometimes go a whole conversation with only a couple of brief stumbles; trust me, that feeling is bliss!
I was never much interested in sport as a student and, while I enjoy a decent game of golf or rugby on TV, I’m still not much taken by the prospect of running round a pitch. After five minutes, even I’d be on the floor, hysterical with laughter at the sight of me trying to maintain even a half-decent run. Trust me, dear reader, it’s not a pretty sight. Thankfully, there were always ways out of sports at school – or at least the more difficult parts that involved running – with an understanding sports teacher such as Mr Grimes. He actually made PE bearable for me, and that’s saying a lot.
If you watched me walk down the street now on any average day, you might well suspect that I was a bit on the merry side, instead of being annoyingly unable to coordinate my feet. Unless I really concentrate, I’ll often struggle to walk in a completely straight line for very long and often trip over my own feet – so yes, it does look like I’m the worst for wear (not that I’d know what that’s like, Mum, honest).
The difference between me at 30 and me at 16 is that I’ve learnt not to care about it.
I’m never going to be an Olympic runner and the jobs I want to do mostly involve sitting behind a desk. I just wish I knew that at 16 ..
Back then, I was faintly moody, mono-syllabic and rude to my parents – in many ways, a typical teenager. But I was also struggling with something else; trying to understand what was “wrong” with me. I sometimes felt like a stranger looking out at all these unwritten rules and social conventions that I often didn’t quite “get”. To me, people seemed so casual and cool with their ability to navigate their way through the minefield of … well, life, that I often felt left behind. It sometimes felt like I was on the outside, looking in.
This is something that was more difficult to overcome. I shut myself away for a long time, hating situations with lots of people which would just make me feel more awkward and tongue-tied. However, over time, with the help of an extremely patient family – and some exceptional friends – I began to feel confident in myself and to feel able to contribute to conversations, feel at least semi-confident in groups and not entirely afraid to meet new people. Even now, I have moments that make me want to hide away, but they are mercifully few and far between – and people who know me are miraculously patient.
I’m telling you all this not to get you to feel sorry for me, you understand, but merely to try and make you understand that, when someone suffers from dyspraxia, all they sometimes need – and want – is just a little patience … and understanding. As a sufferer myself, I can see how frustrating it must be for non-sufferers sometimes, trying to see how we think or imagine why we’re so clumsy, or slow to pick something up, or just plain forgetful and poorly organised. Imagine what it’s like for us!
Even now – I’m 30 and old enough and ugly enough to look after myself – I still get so angry with my body sometimes when it simply doesn’t listen to what my brain is trying to tell it, or I try three times to say a simple word that yesterday I said without so much as a bat of my eyelids. I can also imagine how frustrating it must be for my family and my friends who may well wonder how I can vary week-to-week (and often day-to-day) without any apparent effort.
I wish I could describe it. I really do. What I will say is this – it’s the way I am, the way any dyspraxic man is (or, less often, woman – don’t ask me why, males are just more prevalent), and even we don’t know until we wake up what we’re going to be like that day.
I’ll give you an example. Lately, on a Sunday afternoon, some friends and I have got into the habit of going down to our local park and kicking a football or rugby around – usually just to practice various manoeuvres. Don’t ask me all the technical terms, I’m only liable to embarrass myself by forgetting (not because of my dyspraxia, I’ve just never had the ability to remember what 30-love or the offside rule actually mean). We’re there for a couple of hours usually, and my progress over the past few weeks has been … interesting, to say the least. I can go from passable to terrible and back again in the space of a single session. A kick over the rugby line can go straight as a die – or as far to the left as Michael Foot in his hey-day. There’s just no rhyme or reason; my brain knows perfectly well what it wants to happen, my foot just refuses to listen to orders. It’s like my brain is playing a tune, but each part of my body hears a different beat and decides to just go with the flow.
I’ll never be the next Michael Owen, I accept that.
I’ve spent a lot of time recently reading about dyspraxia in both children and adults, and I think it’s brilliant to see so much literature and support out there now. Back in the 1980’s, aside from Amanda Kirby’s book that I mentioned earlier, there really wasn’t that much around – and I wish there had been, not just for me but for my parents as well. To see their only son growing up with clear problems must have been difficult enough for them, but to then not know what those difficulties actually were must have been doubly so. I have so much respect for my mum and dad for coping with a dyspraxic son when help was – well, just not there.
I’m an avid supporter now of the Kent Dyspraxia Association because of their role in educating people – parents, teachers, sufferers alike – into the problems people with the condition suffer. It gives me so much comfort to know that people are starting to understand that it’s a condition that can be managed, with the right support, and nothing to be ashamed of.
That’s actually the last point I wanted to touch on. I was always embarrassed by my dyspraxia – always ashamed that I had a condition, a “problem” or disability that needed to be managed and dealt with. As an already-awkward teenager, having dyspraxia was an added issue I just didn’t want – and so I would often pretend I didn’t have it. Instead, I tried to hide it or just didn’t talk about it. I wish I had.
If I can get one message out there through this article, it’s this: don’t be ashamed.
Don’t feel you have to hide your condition or that, by not talking about it, it’ll somehow go away – that will just make you feel more isolated and more alone, just how I felt. Since I’ve begun talking about it and opening up about how it affects my life, I’ve found so many new ways of dealing with it – through my brilliant friends and wonderful family – as well as getting a new-found confidence within myself.
I am dyspraxic. Anyone who reads this and thinks “So am I” – seek out the advice and help that’s out there, ready and waiting. Treasure your differences and know that there are other people out there who know what you’re going through – and that the people around you want to help … and perhaps to understand, too. We’re all individuals, each and every one of us, and dyspraxic people bring their own interpretation of the world to the table – let’s celebrate that!