Dyspraxia. No, I haven’t mis-spelled that; it’s not how dyslexic people spell dyslexia, nor is it merely “clumsy child syndrome”. Some of the symptoms are spatial awareness related, but there’s so much else to the condition.
A purely clinical description of dyspraxia is that it “prevents messages to and from the brain being transmitted properly.” 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” disorder, because – to the outside world, at least – a sufferer can appear “normal”. This expression – “normal” – must be disposed of as quickly as possible; there is no such thing as a normal human being, as it can’t hope to cover the wide range of fascinating and eccentric people living on planet Earth.
Someone with dyspraxia can be a severe or mild sufferer with a range of symptoms, which include; clumsiness, difficulty with writing, walking, and talking, short-term memory, and a tendency to be known as “clumsy” or “shy.” Some other, often lesser-known, symptoms include noise sensitivity, poor concentration, and difficulty with particular social situations.
I grew up in the 80s and 90s, and was first diagnosed with dyspraxia at the age of 15 in 1996. Then – like now – it wasn’t a very well-known condition. I struggled living a life that diverged from the mainstream; I am “neuro-diverse”, with my brain wired differently than the majority of the (neuro-typical) population; I process inputs in a different way. I can’t cope with loud and competing noises, for example; I struggle to listen to one conversation if other noises are going on, or a lot of movement is happening within my eye-line. It increases my stress levels and means I struggle to think about my answers very clearly.
Society isn’t set up for people like me, generally speaking, and so its various elements – education, work, social opportunities – often try to force us into boxes that simply aren’t set up to accommodate people with differences.
When I was first told what my condition was, it was a light bulb moment. Suddenly, I wasn’t just clumsy or awkward; it made sense why I felt “different” to my classmates. I had always struggled picking up many of the socially-accepted norms we share as a society without needing to talk about it, but that was just me and my accepted eccentricities. I was, in fact, receiving information differently and only able to take in so much at any one time. Suddenly, there was a bigger picture, this “thing” casually mentioned by one of my teachers who’d assumed I already knew about it.
But 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.
A while later, I finally laid my hands on a book imaginatively titled “Dyspraxia” by Dr Amanda Kirby; someone without the condition who nonetheless seemed to understand my world. 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 read it; this is a disability, isn’t it?
It hadn’t occurred to me until then to consider dyspraxia as such. I was terrified at 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 myself; a guilty secret, if you will. However, it was still an amazing feeling; to finally understand that there was a name for what was going on. I wanted to know more, to understand how I could develop strategies for my condition and do all the things I wanted to do with my life, but Dr Kirby’s book was the only book around on the subject.
Despite this frustration, I finally understood that my clumsiness and atrocious handwriting were down to something more than just “lack of effort” (I lack strong grip in my fingers, and I have limited spatial awareness); that my inability to concentrate or hold down a concentration when there was lots of noise or movement wasn’t due to me being disinterested (just unable to process everything going on); and that my social awkwardness was down to more than being shy or lazy (I needed things spelling out to me, else I wouldn’t pick on the non-verbal cues).
It’s a feeling of wonder when I watch non-dyspraxic people go about their lives and think, “Why aren’t they as clumsy as me? Why am I struggling with my communication? Why aren’t they?” I used to dread speaking in front of the class at school, because I could never go more a few seconds without stumbling over a cumbersome word. Years of working with the public have, mercifully, given me a lot more confidence. I can sometimes go a whole conversation with only a couple of brief falters, and an entire presentation without getting anxious. 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 of managing sports at school, or at least the more difficult parts that involved running, with an understanding sports teacher such as Mr Grimes. He made PE bearable, and that’s saying a lot. That didn’t stop me faking the occasional asthma attack to get me off the pitch from time to time.
If you watched me walk down the street now on any average day, you might well suspect that I was on the merry side (not that I’d know what that’s like, Mum, honest), 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 not before I trip over my own feet. The difference between me now and me at 16 is that I now don’t care what people think of me. I’m never going to be an athlete, and the jobs I want to do involve sitting behind a desk. I just wish I’d appreciated 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 accept my limitations and try to push myself beyond them where I can.
I’m telling you all this not to get you to feel sorry for me, but to make you understand that, when someone has dyspraxia, all they sometimes need – and want – is patience. It must be frustrating for non-dyspraxics sometimes, trying to work out why we’re so clumsy, slow to pick something up, forgetful and poorly organised, and quiet when a lot of noise is going on. Imagine what it’s like for us!
Even now, I still get angry with my body when it doesn’t listen to what my brain is telling it, or when I try to cope with new situations, sound levels that I can’t control, or an huge volume of information overloading my brain. Why can I not do something today that I was taught how to do yesterday? How do I vary so easily without any apparent effort? I wish I knew. All I can 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.
One reason I set up The Two Dyspraxics with a friend of mine, Barbara Neill, was because of the sparseness of information about the condition available for adults. We want to raise awareness to both dyspraxics and non-dyspraxics alike; if you get a chance, take a look at our Youtube channel. We want to help people realise that dyspraxia is a condition that can be dealt with, and that it can’t stop someone with the conditions achieve their goals.
I was always embarrassed by my dyspraxia as I grew up. I always thought that, as I had a condition / a “problem” / a disability, it needed to be ignored and pushed down 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 often lie and pretend that I didn’t have it. I was wrong; I should have been more open.
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 opened up about how it affects my life, I’ve discovered so many new and exciting ways to be able to live my life – using hacks and coping strategies to manage my symptoms whilst keeping my head held high.
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!