At last! Hurray! I’ve been wondering why it’s been harder for me to do simple everyday tasks, when other people just seem to be able to get on with it, without thinking, all of my life. Now I know!
Ok, so that came a bit out of left field didn’t it – although if you follow me on Twitter maybe not – so where to start…
Two years ago I read an interview with Florence Welch (of Florence and the Machine) in which she explained that she had Dyspraxia, a developmental disorder. She explained the symptoms and it was like she was describing what it’s like to be me, better than I’ve ever been able to. It was a revelation – some kind of resolution. Sorry, couldn’t resist.
After researching Dyspraxia online for a while I managed to find a comprehensive list of Dyspraxia symptoms in adults or what I prefer to call quirks, as they really do shape your character and not always in a negative way as people naturally assume. I also read that ADD (Attention Deficit Disorder) can often go hand in hand with it. After reading through the symptoms of both disorders I was in tears. Not because I was upset but because finally, after 32 years, I completed understood myself. I released that I’d never hbeen stupid, or lazy, or careless, or ‘off with the fairies’ I simply had an impairment. I was driven, a lateral thinker, creative and I’d been coping with something that should have been diagnosed in childhood by my Pediatrician.
How the quirks of a developmental disorder (which I’ve been officially confirmed as having) effect me personally:
I’ll put ways of coping into
Gross motor co-ordination skills
As a kid I never figured out the whole crawling thing. I’d reach out to be picked up. I got bored and as soon as my legs where strong enough I’d stand up, cling onto the sofa and lock my knees. When we went out my parents put rains on me as a toddler so that when I frequently tripped up, frequently, I’d just dangle from them and not hurt myself.
Throwing as a kid involved the ball going straight up in the air, sometimes landing back down on my head or even behind me! The other day I tried to throw a ball back over a fence to someone but it hit a tree branch above me and landed neatly in between my feet. Catching involves me reacting way to slowly and grabbing at the air as the object hits me in the face. I’m actually laughing out loud as I type this.
Ridding a bike without stabilizers seemed really scary until, one day at the age of seven, I was too embarrassed to use them any more and asked my friend if she’d let me borrow her bike and if she’d shove me down a small hill. It worked!
I trip over thin air.
If I’m walking slowly I can’t walk in a straight line, unless I pick up speed and momentum then it’s almost like a fun game trying to steer my body around obstacles successfully.
I have very little spacial awareness. I can’t tell you the amount of times I have genuinely walked into a door… A shelf…A fence…A tree.
[I naturally tidy up and remove any obstacles in my living or working space as I go along, which really helps.]
Fine motor co-ordination skills
I hold my pen like my life depends on it when writing. If I try to loosen my grip I drop the pen.
My left hand is good for dextrous tasks and my right is good for more forceful tasks. I write left handed, use my phone write handed, play squash with both which ever will get the best shot. I’m not ambidextrous though, that would be using both hands equally for every task. I prefer squash to tennis as the ball bouncing off the wall gives me those few more seconds I need to judge where the ball is going.
I randomly drop things. My brain forgets it’s still holding something if I’m per-occupied.
[When I’m holding something delicate I don’t chat or let my mind drift. I concentrate solely on that object.]
I didn’t have to cope with tying shoe laces until I was about eight. Thank god for velcro. By then I’d already picked it up from watching others.
I like strong tea and wring out tea bags by squishing them between two teaspoons. Sometimes I accidentally flirt it right across the kitchen. This makes me laugh – every time.
All of this spilling means I’m often sticky. Wet wipes are my friends.
It’s impossible to apply mascara without getting all over my eyelids.
Speech and language
If I’m very tired, or have low blood sugar or I’m just really chilled out and relaxed my speech gets a little slurry. I’m sure people who have only met me during these times must assume I’m constantly drunk!
I have trouble with sequencing and when I’m enthusiastically make a point I’ll be incredibly articulate but get stuck in a loop with my point or loose my place. Sometimes I’ll start my sentence with a prefix and then put it into context at the end. Yoda like I sometimes speak. I write like that when blogging, then have to edit it ;0)
Every now and then I CAN END UP TALKING LOUDLY WHEN I’M FEELING A BIT HYPER OR REALLY HAPPY! or almost in a whisper for no apparent reason.
When I’m a little tired or distracted words I want to use are always just on the tip of my tongue such as grapefruit, wardrobe or duvet. As are peoples names, even my friends. I actually get really articulate when I’m angry. What’s with that? Haha!
Perception
I find it hard to track things moving really quickly so if someone tosses me a set of keys say, my initial reaction is to duck and cover.
I’m rubbish at gauging the speed and distance of cars. If I was in a hurry to cross the road, I’d almost walk into the back of the car before it had fully passed. Sure way to get your foot run over, which I did. Now I’m overly cautious, really overly cautious. When drivers pause for me or flash their lights for me to cross or don’t indicate or drive right out of side roads at speed it really throws me off.
I dislike loose clothing and feel ‘a bit lost’ inside it. Unless it’s really warm I like tighter fitting clothing on my back and upper arms. Hey, everyone likes being hugged, why not by your clothes? I hate high neck lines and jewellery that’s close around my neck as it makes me feel a little claustrophobic. Hey, not many people like being strangled right?
I can hear a high-pitched noise from really far away but have to ask the person next to me to repeat themselves as there is too much background noise ‘crowding’ my senses. This one really confuses my bloke.
I can be fairly light sensitive and would constantly wear shades if I lived in a country that wasn’t overcast for 75% of the year.
My sense of smell is pretty bad unless I take a moment to close my eyes and block out any distractions.
I find it hard to judge, the weight and amount and taste of ingredients especially in relation to other ingredients, so cooking is always an experiment. The amount of times someone has had to wrestle a bottle of salt or oil from my hands. Which leads me to pouring and not massively over pouring purely by mistake.
I used to have an appalling sense of direction until I became a temp age 21 and got used to following my trusty A-Z.
I didn’t learn my left from my right until I went to high-school – even now sometimes I have to pause for a moment.
I often have in mind what date and time I’m meant to be doing something important but not see the significance of it in relation to today’s date, then suddenly randomly realise ‘OMG that’s tomorrow!’ [writing everything down on a paper wall calendar and crossing off each day is invaluable.]
Learning, thought and memory
I virtually have no short term memory. I can glance three or four times at the date or time in the space of a minute because I’m distracted and it’s not sunk in. I can forget what day it is and suddenly remember a couple of times during the day. I can put something down and immediately forget that it’s there. I can start a sentence and forget what I said at the start a sentence and forget what I said at…
[Keeping everything tidy by giving each thing a permanent place to live and then returning it there straight after using it, makes finding things so much eaiser. I even got a special mention by my boss once for being so efficient and having the most organised work space!]
Poor sequencing causing problems with maths and spelling. My maths improved slightly when I moved out of home and had to do my budgeting on the go in the supermarket. [I’d by my usual items so that I had a fair idea of the price anyway. My spelling has improved immensely because I blog frequently.]
[It has a lot to do with practicing how to access the relevant knowledge and trying not to loose your place while processing it, rather than simply learning correct spellings and timestables. Although, basic learning does require your short term memories to sink into your longer term memory, which I seem to struggle with.]
[People just don’t understand: It’s not always about taking more time to learn a skill, it concerns whether I have the capacity to implement that skill effectively when I have learned it? With certain things I have to admit that I simply don’t have that capacity.]
Understanding commands and following instructions. Two at a time please, any more and not only will I not remember the others, I’ll also get flustered about the first two as well.
Teaching by telling, showing, doing. I’ve written them down in the most effective order. I once came home from brownies with the resolute idea that I had to ‘decide which badge I wanted and make it by next week.’ In reality the brownie leader had simply mentioned that next week we would be working toward earning our brownie badge of choice. As a kid and a teen it was like my brain absorbed instructions/information and then flipped them around, shook them about like a snowglobe, added some sprinkles and spit them out, only vaguely resembling what they once were.
I either struggle really badly with concentration that it’s almost mentally painful for me or I’ll get so completely absorbed in a task I’m enjoying that I’ll loose all track of time. [Thank goodness for To Do lists and scheduled reminders] I remember in junior school I could easily think up an entire story in my head with an opening, journey, character development, plot twist and epic conclusion. Then the teacher would say “Five minutes writing time left everyone.” Yet I’d only managed to write the first sentence. I’d get so lost in my own thoughts, you see. I suggested once “Look, why don’t I just tell you the story, it’s awesome, you’ll love it!” which didn’t go down too well, I remember. [I’m so much better now because I’m aware of it and I’m strict with myself and plan my time.]
Often when I write/type things quickly either miss words or repeat the same word twice twice. If I’m overloaded or nervous I easily up jumble the sentence in my words ;0)
Emotion and behavior
You know when you’re a kid or a teen and you’re hanging out with your mates and discussing what possible trouble you could get up to next, well that used to be fun but slightly stressful for me. “Right, we have decided – finally – that we are doing this.” Then I’d pipe up “But I don’t want to do that.” “Christine! We have spent half an hour trying to figure out what to do and you’ve hardly said anything. Now, you speak up!? Where have you been!?” The truth was I had spent the time trying to get a word in and then miss-timing it so when I did manage to get my point out it was irrelevant or seemed almost random. That intermingled with wondering things like if penguins had the choice, would they choose to wear jumpers?
As far as my teenage judgement skills went, I’d often hear people say “You always have to take it that step too far don’t you.” Oops!
I’m not great at entering new situations, unless they are heavily sign posted, and being able to just know what the hell I’m meant to be doing. If there’s some – anyway – I can end up making an arse of myself, I’ll manage it. I’ve learned just roll my eyes and shake my head a little and accept it with grace and humor. As a teen, not so much. [These days I do pause upon entering a new situation, just to take stock of it and compose myself, which really helps.]
I’m a little like this in social situations as you will probably know having met me or read previous posts on here. I’m very blunt which some people find refreshing, others bitchy and some find it plain hilarious. You know the US saying “That sounded better in my head”? Honestly it did! Haha!
I’ve always been a little impulsive with my decisions my moods and my likes and diss-likes. They are ever changing in little ways that most people wouldn’t notice unless I bother to vocalise them. So quite often I don’t bother until I’m sure I’m sure. Or I’ve changed my mind at the last minute. I never do this with friends who I’ve made plans with though, ever.
As I’m writing this I’m working through the list of symptoms for dyspraxia and developmental disorders as a guide to jog my memory. At the bottom it says ‘tendency to get easily frustrated’. Well hit me with a shitty stick. Obviously battling with my concentration etc. ALL OF THE TIME to do certain (supposedly) simple tasks, does make me a tad ‘frustrated’? I don’t throw things across the room anymore though. I do slam down what I’m holding every now and then while going “Aaaaaagh! for f**K sake!” Mostly, I just take a deep breath, roll and drop my shoulders back then put on my determined face and try again.
[All of these traits can be managed to a certain extent by me having some calm down time to process everything and to relax so I don’t get overwhelmed. Best example: After working for three days I often won’t be able to sleep until around 4:00am because my mind is still buzzing even though I’m exhausted. Imagine having to concentrate extra hard with everything you do, which uses up all of your mental & emotional energy. But with a lot of sleep and a calm day in between I’m recharged and good to go again!]
I hope this long list of my very specific weirdness has been of some help to people or at least of interest, please let me know. Everyone with developmental disorders, even one’s similar to what ever the heck mine is, will experience things a little differently from each other. Have some quirks but not others or with varying degrees.
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Slipping through the net
My parents did bring this up with my pediatrician throughout the 80’s and 90’s: My total lack of spacial awareness and lack of co-ordination and concentration. My difficulties with absorbing information and maths and English. His response was “Children develop at different rates. She’s fine.” Although, this is true in a wider sense, I and therefore my parents were really struggling. My teachers just kept on asking my parents what was going on, like they were qualified to know! However, the Dr did send me to a speech therapist, who had a strong posh London accent! My very Northern parents nearly had a fit when we were walking down the road and I pointed out “a big larry” rumbling passed. *repeated face palm*
To be fair ‘Dyspraxia’ was only recognized in the early 90’s but ‘developmental disorders’ (and various other terms for them) definitely had. At the very least the school should have picked up on symptoms similar to well known disorders such as dyslexia and/or Attention Deficit Disorder. Right, moan over.
Thankfully after asking parents of children and people in their twenties with certain conditions, it would appear that schools and colleges nowadays are more alert at noticing students difficulties and getting them support.
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What now?
A year ago I spoke to a GP who failed to tell me he was a locum and went off my misinformed guess of who I might possibly need referring to. After a six month wait I got to see a Neurologist who after a full work up and extensive questioning about my history, confirmed that yes, I definitely did have a developmental disorder which seemed similar to Dyspraxia and/or ADD. He couldn’t confirm the specifics for sure but he could confirm without a doubt that I had been miss-referred by the GP. Another six months, another Neurologist saying exactly the same thing. It’s now a total of fifteen months later and I’m still waiting to be referred to ‘the right person’. It doesn’t help that the two Neurologists share the same secretary who hasn’t managed to get a single thing right when arranging communications or appointments. Total fail, is an understatement.
After spending ages in forums I’ve learned the people who usually diagnose and offer help if needed are Psychiatrists, Psychologists and Occupational Therapists but I’m reluctant to make another suggestion in case, some one runs with it and it’s wrong again. Luckily I’ve found a GP who is fantastic! She’s charting my progress with great enthusiasm and interest. She put my mind at rest and told me that she would write a letter to the benefits agency so they can’t be totally dismissive now I’m back on regular signing.
While I was at the job centre I heard an employee referring to me when I walked by “Why does she need to see ***** (the person who deals with people who need more support). There’s nothing wrong with her!” Maybe to assuage their annoyance I should have limped in a circle while making random howling noises.
If anyone knows for an absolute fact which person is qualified to diagnose specific developmental disorders in adults, please let me know. It’s important because a) I’d like to know what’s going on once and for all so I can get some support b) I need to let the benefits agency know all of the specifics.
Vamp It Up 