Having had a lot of heartfelt feedback about my previous blog on dyspraxia I thought I would try to expand a bit further.
Let me start by saying that in my experience we live in a society that labels .
My beloved mother was a nurse and worked for most of her career in elderly care. She taught me that when we look at an elderly patient we only see what is in front of us, the frailty, the dementia, the illness. We called them ‘geriatrics’ or even worse ‘gerries’. We see what’s on the tin but we don’t see the contents inside. We don’t see the person that has been , nor the richness of the life lived. The best advice my mother gave me in this respect was to talk to older people, but more importantly to listen, to appreciate their histories, their place in the world and hear the tapestry of their experience. They are not a caricature sketched in the lines of old age . They are multi dimensional and once we see them like that we respond to them differently. In my experience she was right .
I came across this great photo recently and it encapsulates what I mean .
The same applies to people with disabilities . There is a danger that we see the disability not the person. I have a good friend who is a doctor. He is also profoundly dyslexic. I wouldn’t know that until I saw his written word because he is highly intelligent, articulate and has many interests that he pursues successfully. He is also an excellent doctor but he just can’t spell for toffee amongst other dyslexic limitations. He is also highly quirky, interesting and a tad eccentric and all for the better.
My son Jamie is dyspraxic but he isn’t ‘A’ dyspraxic . He is a vibrant, intelligent, loving and capable young man with a wicked sense of humour and an immense talent for music and languages. He has a functional condition that he has to work hard to overcome to be able to live the life that he wants without hinderance, but it does not define him . It’s simply one facet of who he is.
This is an important perspective because I have never presumed that Jamie can not do something because he has dyspraxia. It’s very easy to overcompensate and not allow someone to stretch their boundaries . We kill with kindness. That said, I have always understood when he tried and couldn’t do something or couldn’t do it well, but I always encouraged him to try .
So, he had a couple of years horse riding as a small child . I didn’t know that he was dyspraxic at the time but I knew that it takes coordination and confidence, particularly for someone with sequencing and motor skills difficulties, and I knew he had these.
He loved it. He wasn’t particularly going to be an Olympic equestrian but by the time he moved onto other things he could competently canter round the ring and go over small jumps.
He also did judo.
Now, you may not know that a common factor in dyspraxia is hyper extension of the muscles and upper body weakness. From the banal frustration of not being able to get the lids off jars to learning how to throw someone to the floor in a complex sequence of judo moves, this was undoubtedly a hindrance to him and has always been so. But he did it and got a few brightly coloured belts to his name and it improved his confidence and coordination, though he still struggles to get the lids off jars!
When he announced at the age of 8 that he wanted to learn cello I was horrified but only at the sheer thought of having to lug this huge ungainly bit of kit around, I didn’t think he couldn’t do it, I just wished he preferred trumpet, violin or some such other more manageable musical passion. Later when I knew he was dyspraxic I was incredibly proud to see him develop as a skilled cellist taking his musical grades and passing them with merits and distinctions .
He didn’t particularly like written music theory. Those in the know about dyspraxia will be aware that complex patterns can appear to be just a sea of dancing shapes and in Jamie’s case basically getting in the way of a good tune, but he understood it as a means to an end – his beloved music. So, he slogged at it and got his grades and can competently sight read, manage music scales and is a pretty good musical arranger. Who would have thought it when I watched him fighting with a jigsaw or a piece of Lego getting more and more frustrated at the jumble of unrelated shapes and colours in a tangled mess in front of him!
I tell you these things not to boast about him but to set a context.
My father told me that you can do anything you want in life if you want it enough. I have always told my kids the same. It might not be easy . There are always obstacles, but if the passion to achieve something is there, it can be done. I think both of my kids have proved that in many ways and I think that part of that is our collective determination to avoid labels and look at the whole person not the ‘condition’ or the limitation.
Sadly, not everyone sees this the same and it has not always been easy to gain the understanding and acceptance of key influencers who could and should have made a difference. Where Jamie had supportive understanding mentors, he excelled. They brought out the best in him and celebrated his talents rather than his limitations. In his case the proof is definitely in the Languages, English and Musical pudding.
However, I recall at one famous parents evening, a particular teacher saying to me that Jamie couldn’t be bothered to make an effort because ‘everything came to him easy and always had’. I burned with the humiliating way this was said undermining Jamie’s confidence further in a topic he actually loved, but just couldn’t get the results. I was most incensed however because Jamie never had it easy. Because of his difficulties, he had to work to overcome obstacles and everything was a challenge, particularly where numbers or formulae were involved. The injustice made my blood boil. The battle was unequal.
Jamie’s coordination problems were not all down to dyspraxia . He was pushing six feet tall when he reached his teens and long gangly limbs and poor coordination are not a great mix. Then of course the onset of acne and teenage weight gain, coupled with a growing awareness that he was gay did not make for an easy life. He was the perfect fodder for bullies and I am convinced to this day that this is what honed his talent for acerbic wit and cutthroat responses. He might not have been the muscle on the pitch but he could win any battle of words. He is also the champion of the underdog. He can’t abide bullies or injustice and no doubt from his own experience isn’t backwards at saying his piece about the things he feels strongly about.
Looking at him today you would never know these parts of his tapestry but they are part of the fabric that makes him the person he is today.
Of course dyspraxia is not all about coordination.
Autistic spectrum disorders manifest themselves in many and quirky ways . Often people who are dyspraxic have hyper sensitive skin, particularly on their scalps and dislike having their heads or hair touched. Jamie is no exception, but also hates his neck being touched to almost phobic proportions.
Rituals become part of every day life. Whether it is turning around twice before sitting down, or doing things in a certain sequence, the need to control and organise to survive either results in, or exacerbates, already inherent obsessive behaviour patterns.
These are not big issues that should hold someone back . We are all different and I, for one, love quirky people and Jamie is definitely quirky. It makes for an interesting myriad of changing patterns and colours but we all have things that add layers to our personas and the world would be a less interesting and greyer place without these subtle differences.
My daughter for example, always puts the knives and forks out the wrong way round. This has never held her back, she isn’t dyspraxic, it’s just one of her quirks and I’m sure it won’t stop her being a top class doctor when she qualifies. She will, however, have to remember her right from her left but we won’t hold that against her.
Labels are for jars not for people.
I want to know if it’s lemon curd or strawberry jam because I like one and hate the other. People are not quite so straightforward. You wouldn’t know that Jamie was dyspraxic at first sight and you might not ever have known if he hadn’t shared his story. The important thing in knowing is not to label him but to accept that in his particular combination of neurones he has some things he has to deal with that are different from many other people, that he has to work hard to overcome these, but that it is not who he is, simply how his particular systems of connecting wires and levers works.
When we label we limit. Sometimes, as in Jamie’s case, we have to label to get the right level of assistance and support in those formative years but that should be a quiet well oiled mechanism to gear up useful action and reaction, not a neon sign shouting ‘different’
Jamie is absolutely not ‘A’ dyspraxic.
He is gifted and talented, intelligent and quirky. He has a myriad of achievements and many skills. There is little that phases him in life – as long as he doesn’t have to tie his shoelaces quickly!