Hands up if anyone can tell me what Richard Branson, David Bailey and Daniel Radcliffe have in common. Before you say it, no, the answer isn’t me mentioning their names in a flagrant attempt to get your attention. Any ideas?
No? Well, let me help; they all have dyspraxia.
When I first heard of this word – dyspraxia – my first thought was “Isn’t that just a badly-spelled version of dyslexia? Or a form of autism?” I’ve heard both of those questions since from others, and they’re both entirely wrong. It’s a discrete condition of its own and, whilst you can be dyspraxic and autistic or dyspraxic and dyslexic, you don’t have to be. Suggesting otherwise is just plain wrong.
A purely clinical description of dyspraxia comes off a website I found a few years ago, and it says that “dyspraxia … prevents messages to and from the brain being transmitted properly.” Does that tell you everything you need to know? I should hope not. Messages? What messages? And what does it mean in every-day terms for people who have the condition; what are their experiences of living with it, as well as the experiences of people who know someone who has it?
Dyspraxia is classed as an “invisible” disability, because – to the outside world, at least – a sufferer can appear “normal”. Of course, I hate that expression: “normal.” It can’t hope to cover the wide range of wonderfully fascinating and, on occasion, eccentric, people on the planet.
Someone with dyspraxia can be a severe or mild sufferer with a range of symptoms … or, sometimes, just a few. Confused? Don’t worry, we’ve all been there. Its common symptoms include; 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’ve spent a lot of time reading about dyspraxia, theories about its causes, management of its effects, etc, but I’ve struggled to find many studies of how people with the condition actually deal with it. Growing up in the 80’s and 90’s, it wasn’t a very well-known condition, so I didn’t manage it very well. I couldn’t cope with living a life that was different and divergent, and neither could mainstream society, as it rejected my view of the world and tried to force me into a box that I simply couldn’t fit into.
In this article, I want to write about how I’ve dealt with my dyspraxia and how I’ve lived with it, from the point of view of someone who didn’t really understand the condition for many years and is still coming to terms with it.
I was diagnosed 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 “different” to my classmates. I had always been geeky and socially ignorant of many of the accepted norms, but that was just me and my accepted eccentricities. Suddenly, there was a bigger picture, this “thing” hanging over my head casually mentioned to me by one of my teachers who was surprised I didn’t already know about it.
But, of course, how could I know if nobody told me? Remember, this was back in the day before broadband (I shudder to think) or even Google (Ask Jeeves, anyone?). Dial-up internet didn’t really tolerate complex interrogations, and there wasn’t exactly a plethora of material to call on when you could get online.
I finally laid my hands on a book imaginatively titled “Dyspraxia” by Dr Amanda Kirby. It was like she were writing about me; I could almost imagine that she had 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 such. I was terrified at the thought of being labelled as a kid with a disability. When you’re at school, that’s one of the last things you needed. So, I kept this label to me as a guilty secret. However, it was still an amazing feeling; to finally understand that there was a name for what was going on. But wanting to live my life as ably as possible make me even more frustrated by the lack of information around.
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 at a “normal” person (there’s that word again) 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 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 falters. Bliss!
I was never much interested in sport as a teenage and, while I can – at a push – half-enjoy a game of golf or rugby on TV, I’ve never been taken by the prospect of running round a pitch and getting involved with catching, hitting, or kicking a ball. After five minutes, even I’d be hysterical with laughter at the sight of me trying to maintain a straight line. 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, 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 on the merry side, instead of being unable to coordinate my feet. Unless I really concentrate, I’ll often struggle to walk in a straight line for very long, and will 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 32 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’d known that when I was 16.
Back then, I was moody, mono-syllabic and rude to my parents. In fact, I was a typical teenager. But I was also struggling with something else; trying to understand what was “wrong” with me. I 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 life, that I often felt left behind. It felt like I was on the outside, looking in.
This was 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, able to contribute to conversations, 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 when they do occur, I deal with them.
I’m telling you all this not to get you to feel sorry for me, but merely to make you understand that, when someone has dyspraxia, all they sometimes need – and want – is a little patience. I can see how frustrating it must be for non-dyspraxics sometimes, trying to work out how we think, 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 still get so angry with my body when it 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 a problem. I can also imagine how frustrating it must be for people I know who wonder how I can vary week-to-week (and often day-to-day) without any apparent effort.
I wish I could describe it. What I will say is this; it’s the way I am, the way any dyspraxic is, 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. For a while, on a Sunday afternoon, some friends and I got into the habit of going down to our local park and kicking a football or rugby around. Don’t ask me all the technical terms, I’m only liable to embarrass myself by forgetting. We’re there for a couple of hours usually, and my progress was … interesting, to say the least. I can go from passable to terrible and back again in the space of an afternoon. There’s no rhyme or reason to it; my brain knows perfectly well what needs to happen, but my foot refuses to listen to orders. My brain is playing a tune, but each part of my body hears a different beat. I’ll never be the next David Beckham.
One reason I set up The Two Dyspraxics with a friend of mine, Barbara Neill, was because of the lack of information out there for adults. We want to raise awareness of dyspraxia to both dyspraxics and non-dyspraxics alike, and we’re determined to do it in as laid back and friendly way as possible. If you get a chance, take a look at our Youtube channel at www.youtube.com/thetwodyspraxics.
We want to make people realise that dyspraxia is a condition that can be managed and dealt with, and nothing can stop a dyspraxic person do anything they truly want to do.
I was always embarrassed by my dyspraxia as I grew up. I always thought that, as I had a condition, a “problem”, or disability, it needed to be managed and dealt with and then suppressed beneath the weight of society’s expectations. As an already-awkward teenager, having dyspraxia was an added issue I just didn’t want, and so I would pretend I didn’t have it. I would often lie and pretend that I didn’t have it. I didn’t talk about it, and I wish I’d been truthful and open. I was wrong.
If I can get one message out there, 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 make you feel more isolated and alone. Since I’ve begun talking about it and opening up about how it affects my life, I’ve discovered so many new and exciting parts to my lives. My dyspraxic friends, such as Barbara, deserve praise for being especially knowledgeable.
I am dyspraxic. Anyone who reads this and thinks “So am I”; come and meet other people like you in the Facebook Dyspraxia Group. Over time, you’ll come to treasure your differences and understand know that there are other people out there who view the world like you do and appreciate the things you appreciate. Brilliant!