Why am I doing this? Why am I running website and a platform for adult Dyspraxics to tell their stories and share their experiences with the outside world. When I pressed enter to post that Facebook post on a Dyspraxia Facebook group telling people my plans the response was overwhelmingly positive. A few, suspicious and a couple simply rude that under further investigation I discovered to have troll-like tendencies.
I don’t make a single penny out of this website, there are no adverts, no clickbait, no ‘premium content’ and I do everything in my spare time after I’ve clocked out of my day job, the one that helps me pay my rent.
So why do I do it? There’s a short answer, there’s the long answer and then there’s the truth.
If you follow us on twitter @Dyspraxialife you’ll realise I’m quite vocal about Dyspraxia and particularly the issue around a lack of awareness. You may also know bits and bobs about my own personal story, I briefly mentioned it in my very first article for the site and I repeat an abridged version in the podcast interviews from time to time. I think by the time you’ve made it through to end of this you will understand EXACTLY what is driving me. Of course, I don’t drive myself – many a driver instructor has tried valiantly.
For those who know bits of my story already, apologies. For those who don’t, get comfy. This piece has no word count. Uni lecturers take that!!
In October 1986 on the stroke of lunch time my twin brother was delivered by Caesarian section. They were keeping him in long enough to develop to ensure he was as viable as possible. We were 28 weeks premature and after a successful delivery he came crying into this world at 3lbs.
It was only after chats with my parents I came to realise that what followed was a bit of a miracle. I wasn’t viable, they held slim hopes that I’d make it. They delivered me a minute later. 1.5lbs and shorter than my dad’s watch, lighter than a small bag of sugar. The truth is they were resigned to the fact they’d lost me. I’d later learn I was the smallest baby to survive in Devon for 25 years.
At minutes old we were transported half an hour away to a different hospital with the equipment and facilities required to confront the battle for survival. This hospital’s special care baby unit would become my home for the next 99 days, In the first days I fell below 1lb and it wasn’t until I was days old that my parents were allowed to see me. How much of it I spent in an incubator, I don’t know but based on the grainy photos of me looking like a tiny scrawny alien with all manner of high tech tubes and cables fixed to me, whatever happened in there saved my life.
I came home over 3 months into my life, having already had my first Christmas meal delivered to me by a feeding tube. Aged 2 my parents re-located from rural Devon and moved to Hertfordshire with easy, commutable distance to London and it’s top destination. Forget The Tower London or the London Eye, Great Ormond Street Hospital takes that prize. It’s widely regarded as one of the top children’s hospitals in the world and would be an annual pilgrimage for me for my entire childhood and teen years.
In our new home in Hertfordshire my twin brother was growing in size. I wasn’t. There was concern. After all, my battle for survival was far from an easy ride. I was taken to referred to another excellent hospital, St Barts hospital as a toddler for some investigations. My parents were told I was a medical marvel and that one particular doctor wanted to have me be part of his latest study. Issue was, the doctor would not tell my them if I was actually receiving the drug being trialled or the placebo (not receiving the drug) . My parents weren’t happy and said no and demanded I be referred to Great Ormond Street. Testing out drugs on rats is frowned upon these days but back in the late 80’s this particular doc thought nothing of having a developmentally behind toddler help him further his research.
Between the age of 2 and 3 and now knocking on the door of the 1990s, I received a diagnosis that explained my failure to grow and reach the expected milestones. I obviously can’t remember the tests but based on their physical observations and tests diagnosed me with something called Russell Silver Syndrome. Alexa, what’s Russell Silver – don’t worry I’ll tell you. It’s a form of primordial dwarfism with distinguishing features and traits including short height, a distinct triangular shaped face and something that may sound familiar to anyone who knows their Dyspraxia traits, low muscle tone! That last one may sound familiar. We’ll come back to that one.
Now here’s a little biology lesson folks. The human body naturally produces hormones. The hormone that helps you grow and in a way instructs your body to grow is called growth hormone. Most people with growth hormone issues have issues with the amount the body produces , too much – see the 7 ft 4 wrestler Andre The Giant , too little – see the greatest football of Lionel Messi who actually agreed to move from his homeland of Argentina to on of the world’s most famous football clubs Barcelona on the agreement they would pay for his growth hormone treatment.
In my case, my body was producing a decent amount except my body just wasn’t responding to it and refusing to grow.
There was a solution, a new compound called rHGH – recombinant human growth hormone. A drug chemically near-identical to growth hormone but there was one small and crucial detail that I need to add. I was born in 1986, this drug was only approved for human treatment in 1985. I was getting a drug that had only existed for 4 years and I was being started on this treatment aged 3. Daily injections, same time every night Long term effects? No one knew. Would they help me grow? No one knew. The annual check ups to Great Ormond Street for check-ups starting to make sense.
With each visit to Great Ormond Street the endocrinology department would lay upon me a new piece of updated research. They tended to range in severity. Kidney issues I remember, obesity in my teenage years was one and even worse.
Away from the hospital I was very quiet at school. Quiet and sensitive. Because of my lack of height I had a rather weird ‘reasonable adjustment’, an upside down baby bath beneath my desk to rest my feet on. Rather that than have my legs dangle. My feet didn’t touch the floor.
In junior school it was becoming clear that developmentally I was behind the other children. My hand/eye co-ordination was very poor and at one stage I was having one-to-one throwing and catching sessions with the learning support assistant at lunch times, throwing and catching a yellow sponge ball over and over again. Or should I say throwing and missing. I had no sense of rhythm and once got banned, politely advised to sit out of ocarina and recorder class due to my inability to position and move my fingers and blow into the instruments at the same time.
My speech was an issue for me as I used to mumble, struggling manipulate my mouth and tongue to make certain sounds and had a tendency for my words to merge into one, I’d talk too fast or too slow , every time I opened my mouth to talk it felt like is was rolling a dice, not knowing what would come out. Every time someone asked me to repeat myself, which was often, I’d feel a pang of anger towards myself. I had speech therapy, privately. What we could afford and I had a bit of physiotherapy too. Memories of that are sketchy, I just remember running around what I think was a school hall, I can’t remember actual exercises.
During this time my mother asked my school to have me assessed for Dyspraxia and my school said no at every turn. Apparently I was just a bit behind and would eventually catch up with the others.
The struggle with speech and physical co-ordination was tough. I felt quite embarrassed. At my worst I felt ashamed. I felt like I stood out like a sore thumb.
Away from school, each night I’d get my daily injection. A jab on the bum cheek. Suffice to say my mum knew my bum like the back of her hand. It was so routine that there were months even years where my internal monologue wouldn’t even question what these injections were doing to me. The doctors told me without these injections I’d be at most 4 foot 5. They could be the most harmless thing in the world with no adverse effects, they could be quite the opposite. A 4 year old medical treatment couldn’t possibly have had any research into the long-term effects.
I’m told at around 10 I had a massive growth spurt. My body certainly changed. Some of you may be familiar with the growth hormone less as something your own body produces but as HGH – the body building and performance enhancing drug. From the age of about 12 i had super-human strength and looked like a like a very short body builder. The would-be bullies would ask me if they could borrow some and even begrudgingly admired me that this tiny, shy kid who wouldn’t say boo to a goose could lift up a 6 foot man with one hand.
I remember distinctly a swimming lesson at school where the swimming teacher noticed my clumsy and awkward attempt at backstroke and asked me to lie down on my back outside of the pool to practice and then commented on my ‘very well-developed body’ – I had absolutely no idea what to do with those words. A passing comment? A compliment? An observation? I have no idea but whatever it was, I remember the words to this day.
So what did all this add up to. A clumsy, awkward, self -conscious boy who was too scared to speak up through fear of standing out and being asked to repeat himself. A body and physical strength that drew attention to myself and didn’t feel it was my own. A boy with a lot of embarrassment and a lot of anger and lack of confidence. I promised myself in those days with the learning support lady that if ever I ‘discovered myself’ I’d do absolutely anything in my power to help others feel better about themselves. Shyness and fear of failure was holding me back but dreamed that one day I’d be in a place in my life where I could genuinely help or at least try. I’ve always been tenacious, whatever happened in that incubator taught me that no matter what happened I must always fight.
Being quiet and tenacious i didn’t really want to draw attention to myself so I just did things in my own time and in my own way. Knowing how self-conscious I was and knowing my fighting spirit I think my parents thought it best that I didn’t know about their Dyspraxia concerns . I was already contending with being the recipient of daily injections. I 100% respect their choice , you couldn’t wish to meet two kinder more loving parents.
I discovered the word Dyspraxia in 2011 , the year after I graduated. The job hunt was going terribly and not a job interview in sight. An emotional exchange with my mum led me to bursting out that I hated my life and felt like a freak and that I didn’t think I would ever get a job. She explained how she tried to get me assessed and how it explained my coordination issues and how it affected the way my brain processes information. It was nice to hear but I parked it firmly to one side and didn’t give it a second thought. I had gone through everything I had and by hook it by crook had got to a position where I’d graduated university with a 2:1 degree.
In the years before and during the early years of Facebook I embarked on a private mission to discover who I was. I joined a Facebook community for people with Russell Silver Syndrome. I reached out to find people who also had had my type of injections. No one. Someone with Russell Silver Syndrome, with my height, my facial features – no one! I began to doubt who i was. By the time I heard the word “Dyspraxia” I was exhausted and had stopped caring about a label or a group or a community and decided I was what I was.
The years passed, including being kept on as an intern for a national charity working unpaid three days a week for over a year and a half on the hope I’d be offered a job and spent the whole time trying to prove to myself I deserved a salary. I applied for 3 jobs with the charity whilst I was there. I obviously failed. My confidence was rock bottom and in truth felt I deserved no better. A couple of years down the line i was made redundant from a job and sacked from another within the space of 6 months. Apparently I wasn’t organised enough or quick enough and not a team player. The guy opposite me used to bark complaints and sigh at me and according to my boss it got ‘too uncomfortable to watch’ so they had to let me go.
All the feelings of uselessness from my childhood came steamrollering back into my life.
2 years into my employment with my current job my friend text me. With my journalism degree and his graphic design skills we were a creative coupling and always had plans to work together. We were considering some type of charity project as he knew of my history as an intern and a volunteer in voluntary sector. The cause he suggested? Dyspraxia! I light bulb switched on in my head and suddenly my chat from years ago during my horrendous job hunt came spiralling back into focus.
I googled it. What I learned was that Dyspraxia is FAR, FAR more than coordination challenges and brain processing speed. Dyspraxic traits explained why I had trouble being organised, remembering what i was talking about during conversations, even very abstract innocuous experiences from my school days like my wrist aching like hell when writing for a while, writing slowly and struggling to finish exams in the time limit.
Suddenly my inability to pass a mandatory exam in my post-graduate journalism course, a short hand exam where I’d have to write down word for word what someone was saying on tape recorded passage in short hand, then wait 5 minutes and then translate it back into proper words made sense. Slower handwriting, slower brain processing and short-term memory meant that me not being the only one of my 30 person class not to pass it wasn’t me being terrible it was always going to be difficult because the way my brain works.
Suddenly the comments when I got sacked about me being too slow, unorganised, making mistakes because I couldn’t remember verbal instructions and not being a team player began to all make alarming sense. Dyspraxia was suddenly very real, very present and I know realised I was feeling is impact every day.
The more I read the more I realised this was ‘me’. Heightened empathy and kindness, creativity, wit all things I read as being positive traits frequently seen in Dyspraxics were a description of every positive aspect of me that I’d taken pride in that made me feel good and positive about myself.
I ventured onto Facebook and found support groups and this time instead of questions about Growth Hormone injections and I was asking and asking and asking, soaking up every word from this vibrant and diverse community of Dyspraxics. Everyone living their own lives, experiences challenges in different areas to different degrees, no to the same. During these months I realised that every experience of Dyspraxia is different and that for all I had been through in my life I could consider myself lucky. What if I had gone through it all without loving, supportive parents who’d go to the ends of the earth for me, my twin brother, my wife, what if I couldnt pass exams in school and it stopped me getting pass grades and meant I was written off by teachers. I was reading about coping mechanisms born out of Dyspraxic’s creativity and resilience and to get by and through their challenges. Some thriving, some having an incredibly tough time. What I was reading was more inspiring than any fight in an incubator. What I was hearing from adult dyspraxics wasn’t what I was reading on ‘expert’ websites – no list of traits can capture what it is like to be in a person’s pair of shoes and feel the frustration of struggling to do what the rest of the world believes is the easiest thing in the world. The self-doubt of not being able to trust your short term memory or the way you words will come our when you speak. Nor can it capture the way the world will respond to how you come across, the discrimination, the judgement nor the elation of having put into place a coping mechanism that quite literally changes your life and makes life easier.
And then it home. I was around 8 when my parents tried to get me diagnosed. It was now 25 years later. 25 years. Quarter of a century. What I was discovering was awareness and the public profile of Dyspraxia had barely progressed. I wanted to know why. I wanted to know why research into Dyspraxia and particularly adulthood experiences weren’t being entertained as worthy pursuits by the academic fraternity and why despite being a hidden neurological condition and a specific learning difficulty that is believed to affect around 6-10% of the population that the very NHS I hold so dearly in my heart after everything I’d been through refuse to fund Dyspraxia diagnosis. Why Dyspraxic adults who went undiagnosed and unsupported in school years and beyond due to societal ignorance, who’s ability to atain qualifications, reach their academic potential was possibly, almost certainly affected, who lived childhood and adult life possibly struggling in areas others found easy, blaming themselves when really it was the way their brain has been fundamentally wired since birth that meant they experience and continue to life the way they do. Yet somewhere between £350-£1,000 is the going rate for an adult diagnosis.
My story may seem a bit on the extreme side but it is no more special or worthy of telling than anyone else’s. You can learn something new in every story. Our stories matter and our stories need to be told. In truth, I have been asking questions my entire life about those injections, about my birth, about my Russell Silver Syndrome diagnosis (which you can now get genetically tested for) , but never aloud. Was my Dyspraxia missed because my teachers were ignorant. Was it because I just kept quiet and just did my damnedest to get on with things as independently as I could so things weren’t picked up on. I will never know. All I know is asking questions is one of the most important things you can do as a human. I spent much of my life with the perpetual fear of being embarrassed by someone misunderstanding my voice. No more. It’s time to ask some questions. Some questions people won’t want to answer , some will have been jumping to answer but no one ever thought to ask them.
I do not represent Dyspraxia. We are all wildly different. The kind volunteers who contribute their articles and tell their stories aren’t medical experts. I’m not either. We don’t claim to be. Any advice is purely based on what worked in our own specific case. In the absence of answers, research, public profile, I hope each word and piece can form a tappestry of individual stories and experiences that which whilst not indentical to others, reflect others. A tappestry that becomes a truer picture of the Dyspraxic experiences in adulthood that has ever been created. Within our stories is the reason why more research in a must, why more awareness is a must and why more support is a must.
That is why I’m doing this. Thank you for reading.