Don't You Just Hate X-Rays?

    Have you ever experienced a moment that totally transforms your perspective on something? I did recently – and whilst I’m mostly writing this just to get my thoughts down on paper (as it were), I thought I’d still share it!

    As I’ve mentioned, I have dyspraxia, which is described as a “neurological disorder, beginning in childhood, that can affect planning of movements and coordination as a result of brain messages not being accurately transmitted to the body.” Fancy description, huh? To be fair, I borrowed it from this website - http://alifewithdyspraxia.webs.com/whatisdyspraxia.htm - and it’s as good a description as any. It certainly describes my awkward gait!

    However, there was more to it than that; I wrote some months ago about the on-going pain I’ve got in my lower back, hips, knees and feet. I’ve had pains there since I was a child; being born with inward-turning feet, a consultant at the hospital when I was a few months old said that I had awkwardly-placed hips, which would straighten with time and my walking would improve.

    This was the early 80’s, and dyspraxia wasn’t well-known back then – at least, not in my corner of the world, and physiotherapy wasn’t an option. So, I’ve grown up with an awkward gait and painful hips and knees; please don’t misunderstand me, however, I’m not saying this to whinge. That’s just the way it’s been – and certainly, the positive in my life has far outweighed any of these negatives.

    However, I recently did a marathon (a walking marathon, I should say – I’m not silly enough to run it!), and it made me aware that I was 31 years old, but immediately after I’d finished, was walking around like a man triple my age. “Something’s not quite right,” I told myself.

    I was sent up the hospital for a x-ray – which is never the most elegant of procedures, let’s be honest. When I’m being sent for scans of my hips, and they’re worried my trouser zip and belt buckle is going to interfere with the scan … well, my trousers weren’t going to protect my dignity for very long. So there I was, laying on a bed and being scanned by a bloody great big machine. Events like that ensure that I will never develop a huge ego.

    So, back to the GP I went … and there I found out something that threw me. It turns out that what I thought was a problem with my hips – thus causing my feet to turn inwards – was actually a problem with my back. Vertebrae L4 and L3, in case you particularly wanted to know.

    It doesn’t mean anything to me – except that it’s in my lower back. Essentially, these two vertebrae “knock” against each other, when they should be a reasonable distance apart, and that impact causes knock-on effects in my hips and knees. It turns out that the problems with my feet are pretty much coincidental. Go figure.

    So, what’s the next step? Physiotherapy. I’m more prone to arthritis and other lower-limb problems, so if I can postpone any issues through physio, then my philosophy is “Let’s do it.” The next few months will certainly be … interesting.

 

Change & How I Deal With it

    It's said that the mark of a successful writer is being able to turn any of their life experiences into an article and link it to a wider theme. On a completely separate note, today I'd like to talk to you about my recent house move and how I deal with change.

    Through a combination of factors - mostly around being in the right place at the right time - I was able to get a gorgeous flat not far from where I previously lived. I had about three months to move, so there was plenty of time to move - but one thing I am aware of is my stress level when it comes to change. There's a reason I've only moved twice before this in my adult life.

    Dyspraxia has links to other conditions, and has often been said that it's on the autistic spectrum (albeit at the mild end). I do recognise some traits of that spectrum in me, although I find it easier to tackle them ever since I've become aware of their effects on my life. One of the biggest effects is how I deal with change.

    If I know the variables of a particular situation, then I'm calm; even if I don't know all the variables, it doesn't automatically follow that I will panic or have an increased amount of anxiety. For me, it's about a degree of control - knowing that I can somehow influence the outcome (or at least part of it) and be able to ensure I can help guide the steps along the way.

    There are certain things in life, however, that don't allow that to happen. Moving has the potential to be like that - and I'm sure everyone reading this knows of at least one or two horror stories about someones move (maybe even your own?).

    I was nervous about the move, I don't mind admitting - more from the point of view that I don't particularly enjoy feeling stressed, and I find it difficult to think clearly in that situation, which is ... difficult, to put it mildly. However, I was pleased with how the day went - thankfully, a removals company came in and did the actual move, which made things so much easier.

    Living amongst boxes was NOT something I wanted to do for very long. I'd already done it for a couple of weeks prior to the move, and that was horrendous - it felt chaotic to me, and for a dyspraxic who relies on knowing where things are in his own place in order to avoid bumping into things, I've acquired a lot of bruises as the boxes grew ever higher.

    As soon as I was in the new place (with mountains of STUFF everywhere - seriously, where does it all come from?), I was like a man possessed - with the able support and hard graft of my parents, who spent the day helping me out (and who knew the risks of my anxiety levels rising, so could deal with it if they did). Between the three of us, we'd cracked a substantial portion of it all by the end of Friday ... and then completed all but one room by midday on Saturday.

    We were knackered by the end of Friday, but seemed to almost move into a new zone of adrenaline by the Saturday and there was a clear and organised flat by mid-afternoon of the second day - something to very much be proud of there (and HUGE thanks to my folks, who - quite simply - made my flat look as good as it does with their advice and physical labour).

    I think stress levels remained low because most of the actual stress-inducing bits - the physical move - were in the hands of professionals and, although I don't know much about moving, I knew enough to just stand back and get out of their way. Within an hour and a half, I was packed, transported and unpacked - incredible! Whenever I move again, I'll be following exactly the same pattern again - bring in the experts!

    The only left to really do is learn where everything is - as I haven't got much skin left to bruise!

    Now, if you'll excuse me, there's still ONE room left to complete ... I can't do anything myself, as I'm waiting for deliveries, but I intend to scowl at it until it finishes itself. I could get used to this moving business.

    What am I am talking about? Of course I couldn't ...

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

Dyspraxia & Sign Language

    There's two things I'm really interested in (outside of writing) - autism / dyspraxia studies and Deaf awareness / sign language. I have the former (dyspraxia) and am studying the latter (just started Level 2 British Sign Language).

    Before I started BSL, I never considered how it could link up with my dyspraxia - I've discussed that before (http://vikingbay.blogspot.com/2010/11/dyspraxia-emotions-sign-language.html) - but I'm conscious more than ever how they can impact each other, and improve my awareness of both my condition and my communication with others, both Deaf and hearing.

    My short-term memory is atrocious - genuinely, it is terrible, so I have to work hard and for longer to retain information. I'm also a very visual people, so I don't always rely on reams of notes to get me through a situation, but rehearsing and practicing over and over again, even in the confines of my own head, help me learn. I think I worry people sometimes, because they notice my lack of note-taking, but I much prefer visualising my learning; it makes it easier, and BSL is perfect for that - it's ALL visual! I don't make many notes in class, as I much prefer to practice in an almost rote-like fashion, and this makes my learning far more effective.

    There's another HUGE concept in BSL - that of multi-channel, where a concept or a phrase is communicated through hands, facial expression and body. All of sign is, of course, communicated like this, but multi-channel signs are whole concepts rather than individual signs; for example, "I've not seen you in ages" is a multi-channel sign. It uses the face and body as well as hands to communicate that entire phrase - and you need all those things to communicate it effectively.

    That makes it interesting for someone who isn't overly facially expressive for a majority of the time; when I am, it's usually because I'm in a comfortable setting, with people I know, and I'm confident with my emotions. For the rest of the time, if I'm unsure of how to project an emotion (sometimes!) or I have anxiety (sometimes) or not thinking about making an actual effort to project an emotion to make other people feel comfortable, or I just don't understand an emotion, then I will appear quite ... ahem ... serious.

    Visual and expressive emotion is a fun thing to study in BSL when you're like that, and it can increase my anxiety when I have to be overly expressive - although I can't entirely put my finger on why. That's a debate for another time, but learning BSL at level two is a lot harder than level one (in a good way), and so I have to be a lot more focused on the language and how non-manual features such as facial expressions are vital in communication.

    This is a "hearing" issue as well as a "dyspraxia" issue, I suspect; hearing people can use intonation as well, and don't need rely on facial expression to get across an emotion. So this is an awareness-raising discussion as well; for others as well as for me. I've always believed that hearing people need to have more deaf awareness, and have a more emotive face is certainly part of that - and clearly something that I will continue to learn!

Dyspraxia: Assessment Day

    Assessing people for dyspraxia and other DCD and autistic-spectrum disorders is a very specialised art - OT's and psychologists need specialised training in order to do the assessment effectively. Occupational Therapists (OT's) need effective training - and I was more than pleased to take part in this training, especially as it meant I could get an assessment out of it as well.

    I've taken part in a research study at Oxford Brookes University (http://vikingbay.blogspot.com/2011/06/test-subject.html) back in May 2011. I was glad to take part in it, but I had to be clear when I did that I had no formal diagnosis - merely an observed set of issues that my teachers thought added up to dyspraxia.

    However, this was a perfect opportunity to change that - Frances Beaumont, co-founder of the Kent Dyspraxia Association and a qualified and experienced OT herself had arranged a training day for OT's to be able to diagnose the condition, but of course needed volunteers for the OT's to assess.

    I wasn't likely to turn that opportunity down!

    I genuinely didn't know what to expect from the assessment; I know people who have been assessed - indeed, a very good friend of mine is dyspraxia and had a full assessment some time ago - but I deliberately avoided asking too many questions, because I didn't want to influence my own thoughts and responses when I was assessed.

    The assessment day was in Faversham, only a 40 minute train journey from where I live - and I was picked up from (and returned to) the station ... which I am grateful for. Not knowing Faversham AT ALL, it would have been a dead cert that I would have got lost. As it was, I felt a certain amount of anxiety about going to an unfamiliar place and with no advanced plan of action - it's an unsettling sensation for someone who likes to be in control of his day, but also good ... as it helped to explain to the OT what it felt like.

    There were six OT's to six volunteers, and I was "paired" with a Welsh-born, Birmingham resident called Laura, who had been an OT for some years and was looking to expand her knowledge. You always worry about getting on, but thankfully, that wasn't the case here - Laura and I got on famously.

    Frances led some interesting discussions in the morning, geared towards to OT's, but was fascinating to listen to, and then we began individual assessments in our pairs. I mentioned previously that I had to complete and two questionnaires; one being a Sensory Profile, about my reaction to different situations and circumstances, and the second being a more open questionnaire about my past, my life in general, etc. We spent a good couple of hours in discussion around these questionnaires, and it was fascinating to work through the forms and see how my Sensory Profile really does fit into a model of dyspraxia.

    The session was broken by lunch, and it was fascinating to mingle with the OT's ... and the other dspraxics. We had some brilliantly fascinating - and funny - conversations over lunch, and it was great to know that I wasn't the only one worried about missing my mouth whilst eating.

    After lunch - and more discussion - I did some manual tasks; walking on the balls and heels of my feet, finger dexterity and perception tests, and the old favourite ... balance tests. Oh how I love them! It was interesting to get feedback from Laura; clearly, I have terrible balance, but she noted how my body tried to compensate - by putting a hand into a pocket, for example. It seems my subconscious is already trying to help out a bit ... reassuring!

    It was a long day of discussion and testing - I got home about 5.30, but it felt later, and I felt exhausted. It was incredibly worth it, though; it gave me a deeper understanding of dyspraxia, intellectually, physically and emotionally. Having to concentrate on physical actions to a great depth than neurotypical people can be exhausting, and it certainly was that during the testing, because it was very focused - but don't think I'm complaining, because it was worthwhile for the end result.

    The OT's had a second day of training today, then are going off to write the report, so I should get the first draft within the next couple of weeks - and then we shall know the outcome. I'm very much treating it as a new chapter in my life, because I can choose what I want to do with the report - and if there are any changes I want to take on as a result.

    Whatever else, this year has been an incredibly interesting one - and this report will cap it very nicely!

Dyspraxia Assessment ... The Next Step

    I have been determined this year to explore my dyspraxia more - I've written about it in some depth - and also to seek a formal assessment of my condition, which is something I've never had.

    The first step in this diagnosis was back in June when I attended Oxford Brookes University to help in some research (see my post http://vikingbay.blogspot.com/2011/06/test-subject.html) and I received a report from them certainly confirming what I already knew - that my motor coordination and attention-holding was below the expected levels for someone of my age. Whilst not a formal diagnosis by any means, it was great to have the opportunity to contribute to ongoing dyspraxia research at a respected university - and seen empirical evidence of my condition for the first time.

    The next step for me was to seek a formal diagnosis. For adults, this can be very difficult; it's not free for one thing. If you're a child or teenager, there are opportunities to get diagnosed through an Occupational Therapist or Clinical Psychologist at school - as an adult, you quickly discover that there's a cost attached to these, often around £500!

    Eeek!

    I've started working closely with the Kent Dyspraxia Association (KeDA) and am honoured to be a part of their group; it's a truly passionate society dedicated to raising awareness and offering support. I'm attending my first proper meeting in a couple of weeks, and it'll be an interesting - and positive - experience, as I've still only met one other dyspraxic in person, the legend that is Barbara Neill and is now a very good friend of mine. I'm looking forward to meeting other dyspraxics in person - although that's no disparagement to the online dyspraxic friends I've made over the last few months. Having a support group in any form is vital, and I don't know if they appreciate how valuable I find them. So, to Jo, Tom, Spencer and all the others - you rock!

    I seem to have digressed slightly! I mentioned KeDA because when I met a few of the committee in Faversham for a drink, I fell into conversation with a qualified OT called Francis Beaumont. She's a lovely lady and we had a fascinating chat- especially when she mentioned that she was planning to train some OT's in formally diagnosing dyspraxia in adults ... and needed some test subjects. I volunteered so quick, it was almost a reflex action! I was glad when Frances accepted my offer - and it meant I would be able to get a formal diagnosis as well.

    The session is in Faversham in November, and in preparation I recently received two questionnaires to fill in. They were incredibly in depth questionnaires and I spent a long time making sure the answers I was giving were completely honest. It was interesting to codify a lot of my experiences in these surveys, even more so than I've written in my blogs so far. One was a Sensory Profile on everything from auditory and movement processing through to activity levels and a lot more besides; the second one was a wider survey on my life up to this point, and it gave me the opportunity to talk about the issues I've experienced in my life. I won't bore you with details here, but it helped bring the subject into sharp focus!

    My task for the coming week is to return the surveys to the OT who I'll be meeting on the day and then prepare myself for the actual meeting. To be formally assessed for a condition I've heard about all my life in relation to myself creates a strange mixture of emotions that I'm finding it difficult to analyse, but I'm taking it as a positive experience; I still don't know what I'll do with the diagnosis - maybe nothing except know that I've got it - but I know it's the right thing for me to do right now.

    I'll keep you updated!