Pug diaries -The devil is in the detail – dumbing down dyspraxia

 Let me describe a wonderful young man to you . He is a gifted and intelligent person. Tall, handsome, funny, capable, a talented linguist and writer, fluent in Spanish. He is clever, he has a good degree. He has lived independently in several major cities in the UK and in Spain. He has travelled the world. He is a superb musician playing several instruments but his real gift is his voice. He sings like an angel – from opera to swing, to pop and musical theatre. His vocal versatility knows no bounds. He has made a successful career in the national music scene. He is deeply loving and loyal. 
He is also dyspraxic and he is my son Jamie. He is also a member of Collabro, the musical theatre boyband who last year won Britain’s Got Talent. 
I don’t profess to be an expert on dyspraxia but I am an expert mum of someone who is dyspraxic and I know from many years experience what dyspraxia means to those who suffer from it.
We didn’t of course initially know that Jamie was dyspraxic. 
He was a premature baby putting in an appearance just short of two months before his time. He was slower to walk by a few months than some of his peers, but much quicker at talking and recognising shapes, colours and letters.

  
When it came to dressing himself however, it was a nightmare for him. Where other toddlers at playgroup and later at school, could at the very least get their clothes on in some semblance of order, Jamie would be standing in vest and pants looking hopelessly at the inside out T shirt and wrongly fastened buttons wondering how to put it right. The more people got irritated with him, the worse it became and pressure to dress at speed was, to put it mildly, a misery. 
  
People said this would improve as he got older as his fine motor skills caught up. To an extent it did, but only to the extent that he was slightly more coordinated and organised than before, but his peers were developing at a faster rate and he was still the last boy in the changing rooms after swimming, with his teachers getting more and more frustrated.

Then, his younger sister same along and it soon became apparent that at two years younger she could fulfil certain tasks involving motor skills, sequencing and hand/eye coordination better than him. She could assemble and disassemble things at a speed where Jamie could not. Giving them a jigsaw to complete would see her finish it with ease, while he sat looking perplexed at the pieces which seemed to make no sense to him. 

  

  

After a series of mishaps with falls down stairs, bumps and accidents he was becoming known as ‘the clumsy one’. If someone was going to trip up, fall over their feet or struggle to stay upright, it would be Jamie.
One evening after a school party, I sat chatting to another mum whilst the children were getting shoes and coats on. I was surprised when she asked me if I knew Jamie was dyspraxic. I was indeed surprised, mainly because I had never heard of dyspraxia and my immediate reaction was that she must mean dyslexic . 
But, of course she didn’t. 
She was, in fact, an educational psychologist and she explained the basics of dyspraxia to me and it quite simply all fell into place. She had observed Jamie over a period of time and noted his lack of coordination, struggle with shoelaces and buttons, difficulty in using the space around him and the typical ‘clumsy’ child incidents.
She advised me to get him assessed. I was initially anxious about doing so because I did not want my beautiful intelligent boy to be labelled as having ‘special needs’. I can tell you I felt like a terrible mother. Why had I not noticed that this was not simply a clumsy child? I worried that I had missed something obvious and left him at a disadvantage. Reflecting now, I know now why I didn’t notice and why dyspraxia is often at best unrecognised, and at worst dismissed as nonsense.
I didn’t notice because in so many ways Jamie was exceptionally talented and gifted. 
Whilst his handwriting was appalling, his grasp of English was outstanding. He was several years ahead in his reading, devouring and analysing deeply complex books for his age. His verbal skills were phenomenal. His grasp of linguistics was exceptional. He could draw well and had the potential to develop good artistic ability. At primary school he could debate issues with skill and always showed leadership potential. 
On the other side of this equation he did not like, and never really had the chance, to be good at sports. Physical activities involving coordination such as football and cricket filled him with dread. He was bullied for being hopeless and no one recognised that his poor performance wasn’t a lack of trying and that with the right support he would do better . He was frustrating to the typical sports teacher and irritating because by the time he was changed and ready the game had started and his own survival mechanism was to clown around to divert attention from his embarrassment and sense of inadequacy. 
Once it was pointed out to me however, it was quite simply, blindingly obvious. 
So he went off to be assessed and It was evident immediately that he was indeed dyspraxic . His awareness of the wider space around him was limited. When told to run around the room using as much of the space as possible, he would turn in ever decreasing circles almost on the spot but blissfully unaware that he was doing so. 
Faced with a myriad of objects on a tray and asked to point out one item in particular he simply could not see it. The busy picture in front of him was a blur, hence his inability to complete a jigsaw or deal with the popular ‘Where’s Wally’ books. 
He also could not concentrate for an extended period of time. His attention and recall in short bursts was outstanding, but minor distractions in his field of vision and he would be off in a dream where his imagination could run riot. 
There were of course more tests than these which I use simply for example, but the outcome was that with the right techniques, with appropriate allocation of time, and with a bit of tolerance, he would be able to manage much better, be more self aware and overcome some of the hurdles dyspraxia creates. 

Simple – or so you would think. 
In fact it was anything but and throughout his school life there was a general lack of understanding of dyspraxia and certainly when compared to dyslexia, much less tolerance.
To get any recognition at all for learning needs at that time (and it may be the same now I don’t know) you had to be ‘statemented’ i.e. be assessed as having special educational needs. Without that statement the education system had no requirement to respond but with a statement in place, Jamie suddenly had some basic rights to appropriate support.
It was never straightforward however.  
I recall sitting in a meeting with what I can only describe as a highly sceptical form teacher at primary school, whose clear preference was for sporty kids, trying to explain that Jamie had been recommended to sit at the front of the class to limit his field of vision and thereby the number of things distracting him. The reaction was ‘he doesn’t pay attention’, ‘he doesn’t concentrate’, ‘he messes about’, ‘he talks’.
I also tried to explain that the recommendation was that Jamie should be given instructions for work in writing or be given tasks one at a time because, due to his sequencing deficit, in a list of verbal instructions Jamie was lost by number three of seven and therefore would either ask another child, getting into trouble for talking, or sit doodling having no clue what he was supposed to do. 
I understood the teachers frustration, with a class of kids to deal with not just one. These were, however, fairly minor requests and the voice in my ear was telling me it was a disbelief in the diagnosis, a lack of understanding of dyspraxia and a suspicion that it was not considered a legitimate special educational need that prevented proper support being willingly offered. 
I think I was proved right. 
For the remainder of primary school I spent every parents evening reminding teachers that his difficulties in getting changed in PE were due to his inability to tie his shoelaces at speed and therefore football boots with laces would always mean Jamie would be last on the field. I had to repeat time and time again that if you put him at the back of the class he would be distracted by everything going on in front of him. Of course I also had to remind them that he was a boy of very many talents and celebrating those rather than focussing on what he could not do might be more helpful. 
Despite these difficulties, he did stormingly well in his SATs and continued with a full range of out of school hobbies and activities.

I, of course, learnt to work around the way he functioned, giving instructions one at a time and allowing time for getting dressed and shoes with velcro fasteners were a real godsend. I realise now that Jamie’s preference for odd socks probably started because in a drawer full of socks, finding the matching one for him was worse than putting a jigsaw together. This odd socks quirk became for many years one of his trademarks. 
I also never saw Jamie as someone with dyspraxia . I saw him as Jamie my wonderful loving talented and gifted son who had much to offer the world . I didn’t want him to be labelled even though the system required that for him to receive any assistance . I wanted him to be valued for everything he was able to contribute and helped where he had development needs 
By the time he went to senior school we were relatively well versed in the support he would need and the techniques that would help him . We knew that embarrassment and frustration would result in him clowning around and that his difficulties in coordination would continue to be a misery in competitive sports arenas and that he would suffer bullying as a result and of course he did. 
The sporting issue is however actually not quite so straightforward. 
Jamie isn’t actually hopeless at sport. He can swim well. He loved martial arts. He was an able horse rider at primary school age, and could cycle proficiently . He, in short , was good at sports where he was performing alone, where he was not under time pressure and where he did not need to catch, hit or kick a ball.
He is also not hopeless at sequencing. Dyspraxia is a funny thing and the brain works in mysterious ways. Whilst he struggled with maths and lists, music , poetry and languages came to him easily. 

As he moved through childhood, he developed obsessions and whilst any particular topic had his attention, he knew absolutely everything about it and could cite it with a 100% accuracy . Before he was two years old he could accurately choose the correct magnetic letters of the alphabet from the fridge door every time he was asked . He studied ‘Harry at the Airport’ avidly and could recognise every plane simply by its silhouette. Next, it was flags of the world. I could go on, but one after the other he was a complete anorak about the topic of the day be it Pokemon, WWF wrestling or reading the whole of the Harry Potter series 32 times. 

What this demonstrates is the important detail that Jamie was not a dyspraxic child but a gifted intelligent child with dyspraxia. 

We did of course sometimes have to remind ourselves to remember that. 
I recall one day a dearly loved friend and colleague telling me to remember to distinguish dyspraxia from ‘learned behaviour’ . This was in a discussion about ironing of all things. I remember feeling defensive at the suggestion that I may be overcompensating for what was in reality normal teenage aversion to housework, but she was in fact correct and there is a danger of wrongly putting everything down to dyspraxia. Whilst Jamie’s abhorrence of ironing continues to this day, it has little to do with his dyspraxia he simply doesn’t like ironing! 
It was really good advice and I took care from then to stocktake what was a genuine functional difficulty versus a ‘can’t be bothered’ 15 year old. 
Once Jamie was aware of his limitations he learned to adopt strategies to deal with them. He knows he has to be super organised and plan ahead to be able to get things done in the right sequence. He works hard to overcome any difficulties his dyspraxia causes him and is obsessive about detail -he has to be or it all unravels. 
   
   I realised early on that Jamie was gifted musically . He can pick up most instruments and make a reasonable fist of playing them . He was a credible cellist, a good guitarist and self taught pianist, amongst various other instruments. I also knew he had an ear for languages. He is fluent in Spanish but has a good grasp of Italian and French amongst others. 

  

What I didn’t know, was that one day this beautiful voice would appear from nowhere and change the course of his life. He had always loved all kinds of music and still does. My mother gave him a love of classical music and he always adored musical theatre. When he was fourteen, his school did a recital of Les Miserables and Jamie was cast as Marius. You could have heard a pin drop with astonishment when he sang ‘Empty Chairs at Empty Tables’ no one, including us, had any idea that he could sing like that.

  

The rest is history as they say. He has sung at every possible moment since. He has sung solo, in a rock band, in choirs, in musicals and operas and of course in beautiful heartbreakingly perfect five part harmony in Collabro.
  
His dyspraxia has not held him back. It has frustrated him, and caused him some difficulties but more than anything it has given him a determination to succeed despite it and to develop coping strategies that allow him to fulfil his potential and live his dreams. 

  

  

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Everything at Once: Notes to My Son

Very much enjoyed reading this insight into the life changing transformation a child brings

Jonathan Hiskes

Originally published in River Teeth, Spring 2015. (Subscribe here; River Teeth is great, and it’s named after an excellent David James Duncan essay.)

Puget Sound from San Juan Island

June

We returned from the hospital, our family, and immediately I shrugged the bags off my shoulder and set to work unpacking dirty clothes. I’ve always had this compulsion to unpack right away, always in a hurry to restore order. Then I turned to watch your mother. Unshowered, still exhausted from labor, she lifted you from the car seat into her arms. “This is our couch,” she whispered, walking softly. “This is our kitchen.”

You won’t comprehend any of this for months, you shriveled, squinting creature. You haven’t even learned to hold your eyes open. Yet Hannah paced the house, letting the familiar squeaks in the floor comfort herself, if not you. I stopped to watch–the laundry could wait. She showed you the nursery…

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Pug diaries – The perils of Olympian hospital visiting and other strange adventures …….

So you know when you might feel at your most vulnerable in your hospital gown, hair all over the place, no make up, in pain and probably drugged up and a bit wild eyed?

Been there done that? 
Well, I am sure you know that this is the very time you want the world and his wife barging in and out of your hospital room, staring through the window at you, talking loudly outside your door, running up and down the corridor and many other hospital Olympian visiting pursuits – NOT ! 
So, having recently undergone surgery I feel reasonably qualified to commentate on the sport of hospital visiting as an ‘expert by experience’ 
Let me start with the obvious. 
Hospital wards are designed for poorly, vulnerable patients to be supported by very busy staff, to help them get well. They are not places for season ticket holders, or places for a spectator sport. They have limited space, bustling activity and lots of competing priorities for attention. 
They are inherently noisy in their own right with medicine trolleys, meal trolleys, cleaning machines, people talking, telephones ringing and the general humdrum of healthcare at its very busy best. 
Picture the scene therefore.
Standing at the entrance to the ward you can almost hear the engines revving as the clock ticks towards 7 o clock . A herd of wildebeest are snorting in anticipation at the doors which, as soon as they open are thrust wide and a stampede begins – watch out for small children, the elderly and the infirm – these Olympians take no prisoners.
So, here am I minding my own business, just wanting a bit a peace and quiet and a perhaps a little post op nap, when the walls start to vibrate and I find myself in the midst of what can only be described as a scene from Jumanji.
Wild eyed, they push their way down the corridor in a race where clearly every second counts. Staring madly into every room in the hope of seeing the finish line, they push on desperately when each time it’s not Auntie Flo, or Uncle Jim, but little old befuddled me sitting in my jimjams with my TED stockings on show in all their sexy glory
Gradually, the stampede slows to a trickle and the survivors begin to settle by the beds of their nearest and dearest – or so you would think. 
It dawns on me as I snuggle down ready for a welcome snooze, that these games are a long way from over. 
First, comes the attention seeking pair who have clearly entered the synchronised wheelchair dancing competition. 
With girlfriend being unnecessarily ‘pushed’ down the corridor by her dimwit boyfriend to go outside for a much needed fag, it seems beyond the wit of man to understand the rules that this wheelchair is in fact designed to be ‘pulled’ and to do any other is a recipe for disaster. 
Now, I may be prejudiced, but if you are in your early 20s, in hospital as a day case and fit enough to go outside for a ‘tab’, you neither need a wheelchair nor need to be in hospital. If this weren’t enough, said dimwit is clearly at best hard of hearing but more likely hard of thinking. So when the nursing staff repeatedly tell him that ‘ you need to pull that chair not push it love ‘ he stubbornly refuses all expert coaching advice, resulting in it careering off the walls and doors and ultimately into my room complete with sniggering high pitched girlfriend, disturbing my well earned peace. 0/10 , nil points etcetera etcetera.
By this stage I can tell I’m beginning to think in the words of the famous song ……the drugs don’t work.
They, however, found it very funny, in fact it was clearly hysterical with fits of giggles and guffaws showing everyone what a good time they were having at the party and how clever they were choreographing their routine. I, on the other hand, just wanted them to get the hell out of my space and let me suffer in silence (my only excuse is that I was post op and a tad grumpy) 
Incidentally, even without being post op, personal space ranks high on my list of survival essentials so they weren’t doing a rest deal to impress this particular judge. 
Having seen the dancing wheelchairs off, I then knew I could delay no longer and needed to indulge in that classic Olympian favourite, the post op toilet challenge. 
Now you wouldn’t think this would be in any way an ordeal. NOT SO! You only have to mention the words ‘bed pan’ to me and I can’t wee for a week. So after a long process of negotiation, having been observed as ‘safe’ by the experts, I found myself allowed to compete in the ‘toilet marathon’. It was actually about ten feet but it felt like the full 26 miles I can tell you.
Navigating through the pain and getting there in one piece deserves a medal in its own right, but given that these games include a requirement to vault over an errant child, and take part in a relay race down the corridor (the latter specially designed for bored schoolchildren who clearly want their tea and have no interest whatsoever in Auntie Flo) it starts to become a bit of a decathlon. 
So, I’m on my starting blocks and peer round the corner of my door, assessing whether I can sprint to the loo without any close encounters of the ‘children’ kind . 
And I’m off! 
Well it would be fairer to say that, in honesty, my sprint is more akin to a tortoise, but given a clear run at it I could make progress. Sadly a clear run couldn’t be further from the truth. 
The other team has a very different idea about how this race should be run and just as I begin to totter unsteadily towards the loo, I hear “Tristan! Tristan! mind that lady! ” And I realise “that lady” is apparently yours truly and dear ‘little’ Tristan is actually a strapping teenager who screeches to a halt alongside me followed smartly by ‘little’ Olivia who proceeds to stand and gawp at me in my sexy TEDS and impassively stare at my tortoise paced shuffling technique (it will never catch on) in what can only be called a very unnerving fashion. 
If that weren’t enough, ‘little’ Tristan then does a triple jump to the the loo door in front of me and begins to use the doorframe to do some form of gymnastics in the shape of a starfish creating a sort of human barrier to ablution.
To be fair, grandma tells him to move out of the lady’s way because ‘she wants the toilet!’ (And now of course everybody knows only adding to my shame) but frankly ‘the lady’ were she feeling better would probably have given him a sharp kick up the backside and told him smartly to ‘trot on’ 
And it doesn’t end there! 
You may be surprised to know that some people suffer from ‘performance anxiety’ when faced with going to the loo in earshot of other people. I can only describe it as a sort of stage fright and I am indeed one of those unfortunates.
So, if I am quietly trying to have a wee (and don’t even mention the ‘other’ ! ) and someone settles down in the stall next to me you can guarantee that five minutes later I’m still trying to force a trickle from what only five minutes previously was a bladder fit to burst.  
So when ‘little’ Tristan then stands right outside the toilet door in ear shot of my very difficult post op wee, I did, I can tell you, have visions of the nurse having to sort me out with a catheter. Whilst sitting there quietly willing the flow to commence, I wanted in reality to scream ‘get lost you intrusive little beast’ but restrained myself (that could of course have been the mellowing effect of the morphine and in honestly ‘beast ‘ possibly wasn’t the preferred choice of expletive ) 
And that’s not all!
Having done his relay and his star jumps and other Olympian pursuits, ‘little’ Tristan then engages in the ‘who can shout loudest’ contest with precious Olivia. I can not tell a lie there was a frankly feeble and rather shallow attempt by the overindulgent parents to quieten them down but they would in my ratty post op mind set have been better telling them firmly to ‘zip it right now’ or lose access to their computer games for a month
Now, you may be surprised to know, that even in the midst of a busy Olympic Games, the life of a surgical,ward has to continue . Far be it for trivial healthcare issues to get in the way of a top class sporting contest, but it would be nice to be able to have ones wound checked in private without interruption from the reverse wheelchair champion or the trolley vaulting ‘mini me’s’
The staff, already heroically managing the traffic, find themselves swamped with aspiring medalists wanting attention and each one believing they are the winner in the race to get to the front of the ‘daft questions queue’
I take my hat off to them. They are the marshals who keep the event running despite the difficulties of false starts, drug tests and photo finishes. Whilst the ravening hordes swoop around them they calmly fire the starting gun to let the race begin and firmly wave the finishing flag to signal that it’s all over bar the shouting. They are, in fact, the true Olympians and oh boy do these healthcare heroes deserve a medal or two!
Now then where’s my javelin ? …… 

 

   

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