Hands up if anyone can tell me what Richard Branson, David Bailey and Daniel Radcliffe have in common … and no, the answer isn’t me mentioning their names in the first sentence in order to get your attention.
They all have dyspraxia.
When I first heard of dyspraxia, my first thought was “Isn’t that just dyslexia? Or a form of autism?” I’ve heard that question since from others, and they’re both right and wrong at the same time. It’s a discrete condition of its own, yet saying it’s a form of dyslexia or on the autistic spectrum doesn’t give the full picture.
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.
Hmm. What else? Oh yes … I’m dyspraxic too!
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, and I know a lot of people feel the same.
That’s the real point of this article; I want to talk to you about how I’ve dealt with dyspraxia in my life, from the point of view of someone who didn’t really understand it for many years, as well as what it’s like to live with the condition.
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 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” 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 login.
I finally laid my hands on a book imaginatively titled “Dyspraxia” by Dr Amanda Kirby. It was like she were writing about me; that she had been watching me grow, 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. I just wanted to understand what it was I had, so I could deal with it, but 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 this classification to myself a lot of the time. A guilty secret, if you will. 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 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 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 teenage 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 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 knew that at 16.
Back then, I was moody, mono-syllabic and rude to my parents. In many ways, 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 … well, 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.
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 has dyspraxia, all they sometimes need – and want – is just a little patience. As a dyspraxic myself, I can see how frustrating it must be for non-sufferers sometimes, trying to see how we think or 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 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 a stretch. 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 a Tony Benn in his hey-day. There’s just no rhyme or reason; my brain knows perfectly well what it wants to happen, but 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. I’ll never be the next David Beckham, I accept that.
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 in their lives.
See, I was always embarrassed by my dyspraxia as I grew up. I was 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 pretend I didn’t have it. Instead, I tried to hide it andt didn’t talk about it. I wish I had.
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; 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 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”; 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. Let’s celebrate that!