SHEENA'S STORY

Christine McIntyre, an educational psychologist from Moray House teacher training college - part of Edinburgh University, diagnosed me with dyspraxia.  The university disability office referred me to her.  While there was no cost, it was not a full assessment.   I had self diagnosed after reading articles in magazines, and so had read up about dyspraxia.  I had gone for confirmation and also so I could get learning support.

I was pleased to be labelled although I would still like to have a full assessment.  Because it has not proved possible to get one otherwise, I am considering paying for one. I recently had further confirmation when I went to an alternative therapist, a kinesiologist, about swelling wrists and ankles. He was able to tell that I had dyspraxia and the swelling was caused by imbalances due to it. I have known since I was a child that I had a problem with co-ordination but it was not until I read a list of the symptoms of dyspraxia and other traits that I have, like extra sensitivity to the sun and not being able to wear wool next to my skin, that it all clicked into place.  It was some time before I did anything about it. This was partly because I wasn’t sure where to start and, if I mentioned it to others, the majority were sceptical.  Now that I have been “labelled” and there is a bit more knowledge I can speak about it more openly.  I have to guard against speaking about it too much but, because it affects my day to day in ways like not being to drive or ride a bike or read maps easily, I sometimes find it hard not to become a dyspraxia bore or present myself as a victim. When I applied to do my university course I was working fulltime as an administrative officer in the civil service.  I found my job of giving support to archivists boring and also was aware of my shortcomings in accuracy and my ability to pick up instructions the first time I was told.  I wanted to do something at which I showed some ability.  I had been reasonable at English at school and so I decided to take a course in Higher English.  From there I did an evening access to university course while still continuing to work full time.  I studied Sociology and English literature.  I got an A for Sociology and B for English.  I enjoyed the praise that I got for my essays.  At that stage I did not have to reference and was working only from the work of literature itself in the case of English and Sociology textbook or extracts from books chosen for us. I did not have to use organisational skills to the extent that I did at university.

What I found hardest was organising myself everyday with correct books, library card, mobile, etc. and finding the right study/work life balance and not overloading myself as this is when I became flusered and made mistakes.

I find word processing a great help on providing polished work.  But that said, I obtained higher marks in exams than in essays and did not require any extra time. I believe that this was due to not having to focus my energy on referencing.  I was able to focus more attention on analysis and expressing my thoughts with my own “voice”.

I had a lot of interests outside of the university. I was a member of the sociology society and went for meals and drinks with the other students of all ages. No problem there. I also went on a weekend trip to Iona with them.  I couldn’t do things like chopping and dicing vegetables but compensated by doing extra washing up.  I also got a bit confused when playing games like cards and charades but the other students were very good-natured about it. It was only when I was in my final year at university that I was diagnosed.  I was given a proofreader.  She proof-read my 20,000 word dissertation and my  essays.

Because my first experience of proof reading was in my final year, I did not make the most of the opportunity.  The proofreader read my dissertation and then marked suggested changes, but I did this in a panic and a rush as I had to have my essays in at the same time as other students.  I would like to have had enough time for her to check that my final product was in correct order and correctly referenced but I had no time for this.  I could probably have had an extension, but wanted to be the same as other students and didn’t ask for one.  The university didn’t do anything wrong as such but in my case if my tutor had been more educated about dyspraxia - he hadn’t heard of  it -I would have found it easier to ask for help.

I would like all university staff, including library staff, to be educated about dyspraxia. On occasions I was not admitted to the library because I had lost my library card.  It meant that I lost valuable time.  Also, when I am flustered I find it hard to scan the shelves for books.  If there was a dedicated disability officer I could have asked for help with finding books, checking the on-line catalogue and help with collating my photocopies of extracts and articles as I got those muddled.

An issue that has occurred both at university and at work is how to separate my medical condition from lack of application or aptitude.  There is a danger of over-medicalising the situation.  I would like a level playing field and reasonable adjustments made and advice and support in how to  deliver my best work.

When I was studying Sociology as a mature student I was asked what I would consider to be my identity and I wrote down my distinctive characteristics. The ones that I was born with and I will die with and that influence my chances in life. They are that I am female, Scottish and dyspraxic. For me, dyspraxia has overridden my other identity markers. But although this is the hand of cards that I have been dealt it is how I play "my hand" that counts.

Being “labeled” has helped to understand my learning differences but my dream would be that profile of dyspraxia would be raised so that others will recognize it in themselves and in their friends and family and it will be possible to have it diagnosed by the NHS. This is very ambitious but for all neuro-diverse people living in Scotland at the moment there is an opportunity for change. The Scottish Executive is now responsible for Health and Education policies. This is a time of transformation in Scotland. Being the first country in the UK to ban smoking in public places demonstrates this.

 ROY'S STORY

I was clumsy and awkward as a child – I still hate sudden loud noises and have poor handwriting, but retain excellent memory for trivia and facts associated with subjects I'm interested in. Over the years, like many dyspraxics, I've proved to be a popular quiz team member. . . if not a popular team member for any sort of physical activity. I have had life-long co-ordination difficulties, accompanied by low muscle tone and hated jumping in the school swimming pool. At school, I was very poor at art and couldn’t conceptualise Technical Drawing at all. I've also experienced AD(H)D, sleep problems, panic attacks, and am particularly sensitive to harsh bright light, especially on night buses or in places such as MacDonald’s. Other problems which have carried through into adulthood are: poor balance, poor fine and gross motor co-ordination, poor sense of direction, inability to draw, oversensitivity to touch and finding certain clothes and fabrics uncomfortable. When involved in Drama productions at university I was unable to let myself fall backwards and be caught by a fellow student. I always had my shirt tail hanging out. I was usually blissfully unaware of this until it was pointed out by a teacher or another pupil. In my working life, colleagues and supervisors would point this out to me.  Having become familiar with Dyspraxia I now know that I'm fairly typical in often experiencing gagging when at the barber's and, most frequently, when visiting the dentist.  (A way round this is to explain this tendancy to the dentist & ask for the chair to be in a fairly upright position).  I mentioned there what I've discovered about dyspraxia fairly recently and how this awareness had helped me make sense of my make-up as a person. In fact, I didn’t know about dyspraxia till I started to come across the word in relation to problems with Irritable Bowel Syndrome and severe stomach spasms (see below). I subsequently obtained a basic diagnosis from a neurological institute in the east of Scotland. Since I heard about dyspraxia it has helped me understand many  aspects of my particular abilities and character (such as why I am shy in certain situations and quite gregarious in others) as well as why I find certain tasks impossible or difficult to perform while nearly everyone else I know breezes through them. I have never had trouble riding a bike but can’t wink or whistle. Not major problems but my aversion to loud noises has proved awkward in some social situations since childhood – at parties involving balloons, around dogs which may bark and especially during the fireworks season. It wasn’t easy being an adopted dyspraxic only child with an unusual surname and even the fact my parents were older than those of my classmates seemed to help single me out. One time I came home for my lunch covered in spit – my “punishment” for being adopted. Another time, after a history lesson, I got punched in the stomach by another pupil who, assuming my surname was German told me my granddad had killed his granddad during the First World War. I’m too old to have been diagnosed at school but at last as an adult I can explain my physical awkwardness, my tendency to attention deficit and hyper-focusing and noise aversion without people automatically thinking that I avoid dogs because I’m scared of them or am phobic about balloons rather than simply extra-sensitive to the noise they make when they burst. That’s not to stigmatize phobias, rather it’s helpful to know that this is not exactly what’s happening to me – though my nervous reaction – sweaty palms, general avoidance strategies – when people are batting around balloons, closely resembles a phobic reaction. If there's a balloon bobbling along the pavement straying into the paths of pedestrians or across the kerb into the traffic, I will turn on my heels and head back the way I came as fast as my feet will carry me if there's no one around. If people are about and I think I'd look suspicious by running, I walk quickly, my fingers in or around my ears, protecting myself against the potential burst.  If I'm waiting at a bus stop and see a bus approach that I'd normally catch I let it go by if I see a child - or anyone for that matter - onboard brandishing a balloon.  I wonder how many people who are diagnosed as having ligyrophobia – fear of sudden loud noises – are actually dyspraxic.  Frequent panic attcks (up to four a day and constant in the first hours of sleep), constipation & Irritable Bowel Syndrome have also manifested themselves in my adult life and, according to the excellent DANDA-authored book Living With Dyspraxia - more on which later, IBS can be caused by problems in contracting the abdominal muscles and pushing at the same time. (Exercise & eating more fibre can help). I do feel that, deciding at eighteen I was going prematurely bald & then putting myself and my parents through four figure bills and personal strain resulting from my rashly signing up for an ultimately short-lived “hairweave” was the result of dyspraxic tendencies. Though my parents were, as always, extremely supportive but this was the start of an extremely unhappy period in my life which I have no wish to detail here. Neither do I wish to publicly examine how dyspraxia may have affected various relationships of mine. I do wonder about these things, though.

Right up until the age of forty-two - the entire lifetime of Elvis! - I didn’t know I had special needs. I didn’t add up my various symptoms to make a whole. I didn’t know such a whole existed. Or, to put it another way, I don’t realise that certain aspects of my make-up- the clumsiness, the dread of P.E. humiliation, the retention of trivia and problems with short-term memory conundrum, the sleep problems  could be gathered beneath the same umbrella of dyspraxia or one of its former names: Perceptuo-Motor Difficulty or  Developmental Co-ordination Disorder or perhaps the accurately if reductive  Clumsy Child Syndrome, or the rather abhorrent term, Minimal Brain Damage. There were no computers for me to write on, no extra time given in exams, no PE exemptions. I learned early on that I was no all-rounder. I tried and failed what others sailed. The Clumsy Child became a Clumsy Adolescent who then became a Clumsy Adult.

I never vaulted the wooden horse at gym. I never climbed the ropes. I asked myself if it was cowardice. Now I know it was rather an innate grasp of the difficulty it would cause me & the potential physical danger I would face - a danger that wouldn't apply to my seemingly braver classmates.

You don’t know what exact effect your dyspraxia has on your behaviour and actions. Re-checking something may be a “dyspraxic moment”, as may an inability to operate blinds. But, as Andre Gide once remarked, the colour of truth is grey. Such is the case when we try to calculate the impact of our neuro-wiring  on our actions and responses. The truth would seem to be that our condition has a major impact on some situations and a more insidious, secondary effect on others. In some situations it has no bearing at all or is just another factor along with our inherited characteristics, age, socio-economic, peer group factors and our religious and cultural background.

It is because of short-term memory problems that we need to keep checking whether we switched off the cooker, locked the door, etc. Some dyspraxics develop OCD, often it is purely a matter of an acute case of “Did I switch the iron off?” masked again because it’s a situation most people have found themselves in occasionally, but not - as in the case of the dyspraxic - with a regularity that tests the patience of those around us. Dyspraxia can intensify when under stress before subsiding to its normal underlying level  It's always there. To quote Victoria Biggs, "Being dyspraxic is a full-time job". And a job for life.

Conversely, it is hard for those of us with dyspraxia to appreciate that for most people background noises don’t become a thought-clouding hubbub babble of toil and trouble.

We don't understand how the rest of the world can go about its tasks with the radio blaring in the background and multitasking like crazy...

I consider myself a fairly creative person and I play guitar and some keyboards. I have writen a song abou dyspraxia, entitled The Way I'm Wired

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Although certain instruments can prove difficult to learn, playing an instrument can develop fine motor co-ordination. Another creative hobby, or indeed career that attracts people with dyspraxia is photography - something that I took to in my early days though I've never been able to close one eye. 

I am a keen, if slow, learner of foreign languages and find mnemonic methods such as Linkwords and audio courses by the late Michel Thomas which I can constantly replay to be very helpful, rather than employing older methods such as textbooks and tables.

Because of my dyspraxia I’ve never been as much of a film buff as I should have perhaps been given my interest in media in general. When sat down to watch a film I tend to relate & equate everything to my situation & find I fidget & can’t stand sit still through a movie. I feel alienated by blockbusters. It’s difficult for me to identify with all-action heroes . When I first came to Glasgow aged eighteen I was stumped by the occasionally abrasive patter, even though I had a head full of wordplay I was socially clumsy & painfully shy because I knew my physical awkwardness & avoidance strategies around balloons at parties I might go to, fireworks, dogs in flats I might visit marked me out as different. An adopted only child with an out of town accent,  non-Catholic background and dyspraxic too in a city built on tradesman's skills, although it would take almost a quarter of a century for me to know about that element. .As I learned more about astrology I thought I was just staying in the shell I’d been figuratively born with  but I’d definitely say these days I identify as a dyspraxic first and a Cancerian second. I've always "felt" the full moon and used to put that down to being born under the sign of Cancer which is ruled by the moon but now I wonder if dyspraxics generally feel the pull of the moon more than neurotypicals.

I think it can be hard for dyspraxic people to feel comfortable “buying in” to being typical teenagers, so-called typical Glaswegians, Liverpudlians, Londoners or whatever without a little of our oddball square peg aspects coming into play. It's frustrating. To quote just one very small example: one night, having just finished a shift at directory enquiries & totally sober, I wasn’t allowed into a club because the doorman said I couldn’t walk a straight line.  This wasn't particularly a big deal but, although I didn't know  it at the time, it was another little knockback directly caused by my dyspraxia, another subtle undermining of my confidence ... We are disabled even if that disability has often been often hidden even to us for years before we first heard of dyspraxia. We might not be disabled enough or easily enough diagnosed for a free bus pass – I don’t think this has yet been tested – but, even if we haven’t found the label for our condition – we are partly, sometimes largely, defined as people in both our own eyes and the eyes of others by what we can’t do.  I don't think anyone with my level of dyspraxia has ever spent a day entirely asymptomatic. Dyspraxia is so woven into the fabric of my being sometimes I seriously doubt if it could ever be treated. Not for all the Omega-3 and Omega-6 oils in the seven seas.

The Way I'm Wired

When you feel frustration it can need a vent

One in fifty, ev’ry city’s got its two per cent

And I woke up from my dream a little while ago

Now I see the theme run thru my show

Is the way I’m wired

Neurodiversity

The School Of Hard Knocks University (with a PhD)

So you get tired & you think you’re goin’ mad

But it’s the only way you’ve ever had

Got my magpie conversation but my small talk tank

Is running close to empty when my mind goes blank

I’m digging all the details that turn me on

But if all else fails I’m glazed & gone

Check the way I’m wired

A minority report

We don’t give up, we try to hold the fort – cos we are

Extreme machines, inconsistently the same

The way we’re wired, it’s not some sort of game

Can be inspired, I know it’s not all bad

& it’s the only way to play we’ve had

When we get tired & we think we’re going mad

We’re just fired by the way we’re wired

We’re just fired by the way we are

Dyspraxia – it’s the way I’m wired (clumsy kid),  etc.