Monday, April 17, 2006

Some of the 'facts'

Well, after finding out we had Autism in our family... we went 'researching'.. and very quickly got overloaded, there is LOTS of information about this condition.

I always boil it down to simply, a lack of ability to socialise. Of course - it's a heck of a lot more involved than that.. but that's the nutshell I tell people. In that nutshell come behaviours, things people may think are rude.. yet to someone with autism, it makes sense - why do I have to look you in the eyes? I can hear your voice without that - yet 85% of our communication is by body language, and facial imagery.

I recently came across a story of people researching human faces and gestures - they came up with approx 3,000,000 various faces - most of them non-descript / silly / pulling-a- face, and boiled it down to 3,000 definitive expressions that show emotions and what the other person may really be feeling - including the 'micro' expressions that are on someone's face for 1/10th of a second, but show how someone really feels... scared when trying to be brave... 'poker-face' when trying to lie.. etc.

So, to someone who can't 'read' faces... and doesn't want to necessarily look you in the eyes all the time - how much are they missing out in communication? Tonnes! No wonder they have issues socialising.

From another site "Autism is a neurobiological disorder that affects social connection and intellectual comprehension, becoming apparent by age three, although many people are diagnosed years later. People with autism have unusual and repetitive behaviors, and absent or peculiar speech. They’re often plagued by sensory overload, during which competing streams of thoughts, sounds, lights and noises flash simultaneously through the brain. It can be like living in a casino, multiplied by fifty. It has no known cause, and no cure. Autism is a spectrum disorder, ranging from mild to profound disability."

This word has only hit home in the past few days. For the past 3 years, I've been living a life of someone who has a child who is fairly normal.. just a little delayed (he's 5.. and we have yet to hear a full setence from his lips... he can just put 2 words together comfortably... only recently do I have any idea of what his voice may be like... for up until now, it's been mostly babble, and the occasional favourite phrase 'To infinity and beyond', thankyou the makers of Toy Story - we have a common ground for our son.

So... I have a disabled child - brought home more clearly to me from the fact that he isn't coping with a full day at pre-school, and they have asked me to either cut his days, or come and be a support person for him in the school grounds. At first, the 'I will do anything for my child' came out - of course I will support him, he needs to be here for the best chances for him for socialisation. Then came the 'I need as well' - I need my space, I need my time for me, I need some time without my children... I am swamped and overwhelmed.

Then came the acceptance 'I have a disabled child'... me... I personally have a child who is not able to do things other children do, who cannot manage a regular routine, who cannot focus, who needs assistance to get through a day. Then... gratitude 'How many other parents get asked to come and spend more time with their child by their school?' Seriously.. its a responsability and a thrill. Of course.. if I hadn't been retrenched in the beginning of the year, and allready working from home part-time, we would also be faced with the 'one of us needs to be at home full time for this child special needs'... another thing for me to be grateful about.

Ahhhh so many emotions about a simple thing - I'm convinced it's genetic, 2 generations back, my Great Uncle was known for beiing a tinkerer - always in the back shed making things - not socialising... invented some amazing things. Autistic traits... from what little I have heard about him - yet who really knows, they weren't diagnosing such things back then. My Aunt, has Bi-polar.. thought originally they thought it was Asperger's - the speaking cousin of Austism. My son, diagnosed a year ago, and my nephew - also diagnosed, yet his parents are still in denial, he recently turned 8.

I think one of the hardest things about Autism is the not knowing - we don't know exactly why it happens, and it's so easy to look at ourselves and say - am I defective? There is no 'cure' its' genes, and it's not up to us to manipulate these things. There is also so much guilt by association, it's hard to look at this child each day and rejoice in them, yet rejoice we do.. in every little word, little phrase, in every beautiful light-up-the-whole-face smile. Tonight, after dinner... we had friends over for a bbq, we were just sitting and chatting, and this boy sitting beside me just started singing - twinkle, twinkle.. and sang pretty much the whole song, with all the words... the first time I've heard it from him so clearly... and that was a moment of rejoicing.

1 comment:

  1. Welcome to the 'blogosphere'. I blog for the same reasons you mentioned for me and for everybody else. Thinking I might have an impact to someone else is what gives me a lot, but not all, of the motivation. Sometimes it's just for me.