Monday, February 22, 2010
I'm not broken
‘I’m not broken—I’m just different!’
is the story of a boy with Asperger’s Syndrome
who was diagnosed at fourteen, after a tumultuous childhood.
It is the story of a mother who wouldn’t give up.
It is the story of the beauty of music,
restoring lost places of the heart,
to a teenager too accustomed to failure.
It is about a red guitar.
It is a journey of discovery, audacity, humour and grace.
It is funny, gutsy, raw and real.
I have written about living with my son who has Asperger’s Syndrome. I have chronicled our lives together from his birth, briefly covering the early years and the roller coaster ride from the bizarre to the obscene, the poetic and the hilarious. Watching my son was like watching a child try to play hopscotch when he couldn’t see the squares, and everyone else could. His confusion was palpable and heart wrenching. I didn’t realise his pain, until at fourteen, he wrote about music. My heart ached when he ended with, ‘I was never any good at anything until guitar.’
I avoided an overabundance of self pity and despair while touching on its depths. I wanted to give detailed behavioural observation that made understanding accessible because, like so many others, I found the traditional medical texts on Asperger’s difficult to sift through and apply to daily life. I also found that these text books were inadequate to share with others to gain understanding from them. Asperger’s is a community problem, not just a family problem. Any advance in treatment and acceptance must incorporate the wider community. Any book on Asperger’s needed to be more accessible. There is a strong thread of humour and warmth to lift the story.
I have recorded the behaviours and perceptions of Asperger’s and the fallout with an air of detachment. But I also recorded the stories as narrative, capturing the heart of living with a child who appears to see the world through broken glass, while viewing you, his parent, protector and teacher as defective because you can’t understand his world.
I have described the anguish and the fear that grips you from the soles of your feet to the tingling in your scalp that simply comes from being a parent, but seems magnified into a twilight world of insanity with a child with Asperger’s.
I talk about what I learned, as well as he, in the muddled, hilarious stumbling between two worlds; linked by love. Two worlds that seemed so desperately different at first view. Hand in hand, mother and son. A boy obsessed with the unfathomable and a mother obsessed with understanding. The secret to finding answers started with me finding the compassion to look at life through his eyes.
To accept, to understand, to celebrate
I wish someone had told me earlier that my son had Asperger’s Syndrome.
I wish someone had told me that he was locked into a world that he didn’t choose; a world that I didn’t cause.
I wish someone had told me that I didn’t need to rescue him or force him out of his narrow prison.
I wish someone had told me that all I had to do was join him in his world, sit there with him while he found the courage and acceptance that would help him find his own way into the world that judged him odd; different.
I wish someone had told me how easy it would be to celebrate him when I understood.
I undertook a one woman crusade with every parliamentarian remotely related to the problems of disability in the education system. I wrote copious letters from my spare room attempting to sound as though I had an army behind me (I wish!). I lobbied in his public high school where the obsession to make my son fit in ruled and if that didn’t work; punish. Their determination for uniformity was as great as his need to try, and when that didn’t work; escape (aka truant). I took the school to HREOC and then gave them all a list of suggestions—Kevin Rudd said he liked them in his letter to me, but who can tell with politicians!
What is it like to live with Asperger’s Syndrome? It is like watching a canoe leave behind the wake of an ocean liner. It is like trying to find Hansel and Gretel when they left no crumbs. It’s like trying to climb down from Mt Everest when you can’t remember ever being at the top. It is a wild roller coaster that looked like a quaint little merry-go-round with the pretty horses.
I hope you enjoy my story for all the above reasons. And for one other—the reason I wrote it—so that we may all look at each other through new eyes; then understand, accept and celebrate our differences.