Dyspraxia Assessment - and Confessions of a Dyspraxic

    Well, it's official - I have dyspraxia.

    For those of you that read this blog regularly, you'll probably be thinking "huh?", since I've already written about how I first learnt about dyspraxia at the age of 15 when a teacher at school told me (assuming I already knew) that he thought I had the condition.

    As a result, I've spent the last 15 years hearing that word, but not really understanding how that word / description / label actually affected me. Since I've opened up to learning about the subject - and meeting fellow dyspraxics - I have learnt so much about the condition and what it means to me.

    My assessment day was a couple of weeks ago and I came away buzzing from the experience. (You can find my blog about the day here - http://vikingbay.blogspot.com/2011/11/dyspraxia-assessment-day.html). It was an intense - but incredibly worthwhile - day, especially because the final draft of the report landed in my postbox the other day. It was a strange mixture of emotions to hold the report in my hand, knowing that - for the first time in my life - someone had formally recognised my condition.

    I won't bore you with the entire report (it's over 20 pages long and a lot of it is personal to me in any case), but the paragraph that is the important bit is as follows: "Matthew has Development Coordination Disorder (Dypsraxia), which affects his balance, tactile discrimination, fine and gross motor skills and social interaction, as well as his sensory systems." Such an innocuous sentence, but one which boils down (extremely succinctly) the areas of my life that dyspraxia affects - and formalises my condition.

    I started this blog in August 2010 (although it doesn't seem that long ago), and wrote my first article about dyspraxia on October of the same year - it had taken me two months to work up the courage to "come out" as dyspraxic to the blogosphere, and that can be an anonymous enough place if a writer chooses (although my cover of Smithy has been pretty much blown out of the water with the publication of my first book, Fall From Grace!).

    Looking at it objectively, I'm not bothered about keeping my dyspraxia secret any more; it's a part of me and something to be accepted - unlike when I was a teenager and in my early twenties and embarrassed about the condition ... with a chip on both shoulders about it. Having an employer (in my late teens) who grossly over-reacted when I confided in them certainly didn't help my confidence - but my perspective has, thankfully, changed and relaxed in the last couple of years. I've learnt to accept that my dyspraxia is just part of me - and it's help make me the man I am today, which has helped to make me finally feel  comfortable in my own skin.

    Since I've accepted that this is who I am, and started acknowledging and facing the anxieties and physical issues I've got as part of the condition, my life has expanded and changed beyond measure - in a good way. 2011 has been an incredible year: I've changed jobs, turned 30 (okay, nothing I can do about that, to be fair - except "do a Joan Collins" and lie) and travelled more than I could have ever imagined a year ago. I've also had the good fortune to meet and make friends with fellow dyspraxics for the first time - and so many conversations where one or both of us say; "Wow, you do that as well? I thought it was just me!" Having dyspraxic friends really helps me feel I'm not alone in experiencing the effects of dyspraxia!

    All this - my blog, my friends (dyspraxic and non-dyspraxic alike) and family, my new experiences over the past year - have helped me to accept my condition and, whilst understanding that it's a part of me, that it doesn't control me. I control it.

    The report also has a number of appendices, talking about possible ways to tackle areas of your life that are affected by dyspraxia, and I'm carefully studying those. Why? Because getting that dyspraxia assessment isn't the end of my journey, not by a long shot. When I started this blog, it was partly to help me chronicle my acceptance of dyspraxia and to get an assessment, which I thought would bring my exploration to a close - well, you won't hear me say this often, but I was wrong. As I've developed and grown as a person, I've learnt that the assessment is just the beginning - I've got a lot of things to learn and develop, and the report will help me codify what to do first.

    Personally, I can't wait!

Feeling The Fear & Doing it Anyway ... One Step at a Time

    Okay, quick recap; I'm not good with travelling. People who read this blog will know this about me by now - and for a long time, it's held me back. I've rarely travelled far, especially by myself, and my anxieties (I believe rooted in my dyspraxia) have often held me back.

    Right, that's us all up to date. I should say, I've started really taking a long hard look at my anxieties at that aspect of my life, because I want to start "feeling the fear and doing it anyway" - my new motto in life! I have to be patient with myself - I need to conquer my anxieties slowly and steadily, else I'll just go back to the start again - but I've made a couple of trips to London (would have been three, but I was ill on the third) and started to tackle my worries head on.

    Part of my slowly-increasing confidence is down to my current job, which I started back in July and involves some travel around the eastern "half" of the county. I have two main locations I visit when not at my "home" location - one is 30 minutes on the train and one is 45 minutes away. The first few times, I got hideously lost and a bit stressed as a result; as I've learnt the route (and even some short-cuts), I've actually found myself giving directions to other people ... crazy.

    Anyhow - I recently found that I had a free afternoon and decided to be impulsive for a change. For anyone who knows me, you'll know that's not really in my nature - I always try and plan to the nth degree, which I am pretty positive must drive people insane sometimes, but I like to be prepared for all eventualities as being in control of a situation usually helps me control my worries.

    However, I decided to test myself - and so, being only an hour from London at lunchtime, I decided to jump on a train and see where the afternoon took me. Oh yes, the other thing I should mention - I loathe the underground. I. Hate. It. I've never used it by myself - and even when I'm with other people, it makes me distinctly ... ahem, uncomfortable. It's been a personal mission of mine for a while to use the underground by myself and, when I arrived at Victoria, I could feel my legs carrying me outside the station away from the tube station.

    It was at this point I got cross with myself and just bloody did it. I went on the underground by myself - and think I've begun to conquer a personal demon in the process. I should say, I didn't go far - I went two stops along the South Kensington, then four stops back along to Westminster, but it felt - and still feels like a real accomplishment. To many people, it may not seem like much, but for me, it's a big stepping stone - it means I've got no excuse to not try it again, and perhaps not feeling like I'm going to have a heart attack the next time!

    My brief visit to South Kensington allowed me a quick trip around the Victoria & Albert art museum - somewhere I've never been before. I'm determined to go again in the new year and have a proper look round - although, given its size and layout, I have no doubt I will get lost going round! Still, that doesn't matter ... as long as I can find the cafe, I'll be happy.

    I then travelled to Westminster - just because I felt like it and wanted to prove that my tube travelling wasn't just a one-off - and had a mooch around. One thing about London that I'm starting to notice - places really aren't as far apart as you actually think. Parliament, Whitehall, Buckingham Palace, the Cenotaph, Trafalgar Square ... they're all incredibly close to one another. I even walked past Downing Street and saw armed police again (I'd seen similar back in the Summer when I visited Parliament) on the gates - being from the "provinces", I can't quite get used to that.

    By this point, I'd been on my mini-tour for about three hours ... and my legs were aching something chronic, so I did the only logical thing and decided to WALK back to Victoria train station, thirty minutes away. Obviously.

    Although I got lost a couple of times when I got my bearings confused, I was able to contain and understand the source of my anxieties a lot better - and so deal with them. I feel exhausted now - mentally as well as physically - as I always do after being in unfamiliar territory; I have to concentrate on where I'm walking to make sure I don't physically walk into things. Happens more often than you'd think!

    So ... a productive afternoon. I've proved to myself that I can move beyond my previously implacable "issues", albeit it at my own (often stubborn) pace. I write about my experiences of travelling because I wonder how many others experience similar things - and, if there are, hope that we can always learn from each other!

    Oh yeah - here are a few photos from my exploration ...
https://www.facebook.com/media/set/?set=a.10150505924765170.429067.741245169&type=3

Perceptions of Disability

    I have dyspraxia & OCD (and some Aspergic traits thrown in for good measure), which have one thing in common; they are all "invisible" conditions. If I was sat quietly in a room, and concentrating on my expressions and movement, then it's possible you wouldn't have a clue that I had these conditions.

    It's not just these conditions, of course, that are invisible; everything from diabetes to Deafness is not visible by just glancing at a person. Of course, in certain circumstances, there are subtle clues and hints that knowledgeable people can pick up on, but in the everyday world - a friend of mine twigged that I had dyspraxia before I'd even said anything, but then again, she is a medical assessor.

    Being able to "hide" a condition can be nice, sometimes; it enables me to maintain my privacy should I choose. On good days, when the sun is out and the wind is light, I can appear almost ... ahem, normal ... and people wouldn't think any different about me to the next person. When I was younger, I was very sensitive about that. Now, my philosophy can be summed up by one word ... "meh". It doesn't bother in the same way it used to, and I'm a lot more open about my condition (as regular readers of my blog will know).

    One thing still bothers me, though, and I can't help but get annoyed at it. It's when people assume; they assume that a Deaf person is stupid because they can't automatically lip-read, they write a dyspraxic person off as clumsy and worthless because they can't catch a ball or think that because you rely on routine to get through the day, that you can't ever do anything new. Instead of thinking, "Oh, maybe that person has a disability", and adapting their worldview to take into account someone else's perspective, some people just assume - and get it seriously wrong.

    I'm fortunate to have Deaf friends; they're not my friends because they're Deaf, but their Deafness is of the things I know about them, as well as their eye colour, height and job. They're as - and in some cases more - intelligent as me, and just because they can't hear doesn't make them any less of a person. If someone's looking away from you and they ignore you when you call their name, have you considered that they could be deaf?

    For me, I've become quite good at "hiding" my condition - sometimes, you wouldn't think there was anything "wrong." I tell people if the conversation comes round to it, but never make a fuss - and so people are often surprised when I do mention it. Why do I hide it? Habit, mostly - because, at school, I hated the thought of being treated differently ... and I still do! I've been fortunate in that the overwhelming majority of people I meet couldn't give a ha'penny damn; on the flipside, there have been (thankfully rare) occasions where people seem to struggle with understanding ... well, me. I get annoyed when that turns into thoughtlessness - when they don't think I might need some extra support or patience occasionally (which can happen occasionally - even I have to remind myself I'm on the mild end of the autistic spectrum and sometimes need to pace myself).

    I must reiterate, though - that's thankfully rare (but tiring when it happens!). Most people are great - and recent conversations with new and old friends recently have reminded me that there are people out there who care and want to understand. You may not know who you are, but you rock all the same.

    You'll find a lot of similarities between people with "invisible" conditions - oftentimes, they don't make a big song and dance about it. They might feel frustrated in private, but it remains just that - private. I'm quite a private person, so that's how I am, but I wonder if we don't always do ourselves a disservice by not broadcasting when something - or someone - has been insensitive.

    That's the main reason I'm writing this blog; as a way of trying to raise awareness and show that I'm not fundamentally different. Yes, I may look at the world in a different way sometimes - but then, don't we all? What's my disability got to do with that? Let's start pushing back against those people who make assumptions - let's start gently reminding them that just because someone is Deaf, or dyspraxic, or ... well, anything across that spectrum, they're still people. Let's get that small minority of people educated!

Heroes & Helping Children

    I met an old school teacher of mine today who made me think about my own childhood - for the first time in ages - and how children with autistic conditions are given structure and discipline through education and their families.

     You may have heard of Dr Temple Grandin, who is a hero of mine. She is a doctor of animal science, a professor at Colorado State University and a consultant to the livestock industry. She also has high-functioning autism - and her ability to cogently discuss her own view of the world, whilst "feeling the fear and doing it anyway." Seriously, she is an awesome woman - I recommend her wiki entry (http://en.wikipedia.org/wiki/Temple_Grandin) and this speech she gave (http://www.youtube.com/watch?v=2wt1IY3ffoU).

    The reason she is one of my heroes is because of her ability to successfully weave her jobs in with her condition and become incredibly successful with what she has done. Also, she’s had a very supportive family around her, who have fought for her all the way, and had teachers right from the word go who set her consistent boundaries and gave her a firm framework to work within. Although she admits that her high school days were the “worst of her life”, she also acknowledges that she had a lot of supportive mentors right from primary school – and a mother who never stopped believing in her.

    I’m fortunate too; I’ve got a family who are incredibly supportive of me, with parents who have always been there for me (although I suspect they might well have considered adoption if I’d pushed them much further!). They gave me boundaries and a structure to my life which I needed; although I often pushed back against those boundaries, and tested my parents’ patience to the limit, to know I had that structure whilst I was struggling to understand my dyspraxia meant more to me than I’ve probably admitted in the past.

    I’ve met children with autism-spectrum disorders who can often appear out of control, and when you speak to their parents, you get the response; “It’s not their fault, they’re autistic.”

     As you may have guessed, I disagree with that statement!

    While I accept that autistic-spectrum children may well need to be approach differently in some regards, they still need guidance, support and discipline from adults. I know how tough it can be – I look back through my rather jumbled memories and see how much my parents must have had to deal with – but that doesn’t mean it shouldn’t be done.

    Just because you’re on the autistic spectrum doesn’t mean that your behaviour should be "excused" – by anyone. Whether a child has autism or not, they can be shown how respect and manners can be an important part of their life. Yes, it might be harder work, and yes, extra support is vital, but no-one should be left out of learning anything just because it's more difficult.

    My cousin Tom is 6 and has autism – and is a lovely boy. He has two parents who love him intensely and have given him a basis to his life that he can use to develop his own skills, likes and dislikes, and friendships – like any other children. Before Tom came along, his parents (like a lot of people) didn’t know much about the condition, but threw themselves into learning about it, so they could manage its impact on their son and themselves. By understanding how Tom feels, and why he reacts to situations in certain ways, they’re giving him the best chance in life to become whoever he wants to be.

    Whenever I hear someone say “Oh, they’re autistic / have Asperger’s / are dyspraxic” in relation to a child, I almost hear a verbal shrug behind those words. Living with the condition is tough – I’m dyspraxic, so I understand – but I’ve had the support and love of people who have never used that verbal shrug about me. I’ve been taught that it's good to have ambition, and that I can achieve anything - and never to think I’m second-best because I have dyspraxia.

    Talking to my ex-school teacher today (Mrs Brown, who I still think fondly of even after 20 years have passed), she commented on the children she had seen pass through the school gates with a variety of conditions, and some of the strategies she’d developed in order to teach and inspire them. There are a lot more teachers (often unsung) out there, who inspire their own students in the same way, and I applaud their tenacity. To have teachers who are champions of equal access to education is what it should all be about – for me, Mrs Brown eased my entrance to secondary school with a kind word and a supportive attitude and, while my school days were never the happiest, teachers like her made it all the more bearable – and sometimes downright fun!

    Children deserve the best start in life they can possibly get; I was very fortunate to be loved and supported by my family, and it's wonderful to see that, as understanding about the autistic spectrum develops, so does the support network for both people with the condition and their families.