I have moved over to WhittereronAutism.com. Please follow the link to find me there. Hope to see you after the jump! :)

Thursday, January 17, 2008

Katie McCarron – theft of joy

The trial is over and the verdict out.

As a member of the "Autism Hub" we were asked to set aside a day in memorial to "Katie," so that the memory of "Katies" brief life remains with us.

There are many scholarly writers to address sadness, anger and disbelief but I’m not much of a political animal. Autism is part of so many people’s lives and public awareness grows daily. So much of it is a different way of being or thinking. I may not understand it very well but then I don't understand Alzheimer's either.

Autism has become very ordinary to us as a family and certainly not newsworthy. So instead of berating the ugliness of the world, today I choose to celebrate the ordinary, as autism doesn’t exist in a vacuum.

I sit in the doctor’s waiting room with my eight and a half year old son on my lap and a nod to the receptionist. She sits behind frosted glass wearing a military jacket, purple hair and a smile that could melt ice. She clatters away at a manual typewriter surrounded by stacks of patient files. My son’s head burrows into my arm pit trying to disappear. A weekly visit to the wart doctor is an trial added burden that we could do without. These days he is aware that his behaviour is socially inappropriate, but he doesn’t care right this moment. I stroke his silky hair and chat. “Ooo look at that big tree out there! Can you see all those squirrels scurrying up and down the trunk? It’s quite a traffic jam.” He pays no heed, wrapped up in the anticipation of imminent physical pain. I glance at the calendar on the wall and count backwards to the date when my eldest daughter needs to go and have her Malaria parasites counted again.

My mind fills again with my father’s graphic descriptions of diseases in the Tropics during his long Naval career. The memories of his youth are clear and sharp, but Alzheimer’s has dissipated the here and now. I peek at my wrist watch to figure out how long we have until Wednesday afternoon’s double session of speech therapy and occupational therapy for the boys. I run down my list of current occupational therapy goals to give to the therapists, will they really be willing to help with the hair washing life skills? Maybe next year he’ll learn how to manipulate that dastardly pencil sharpener?

I need to make another dental appointment for them all, as we missed the right day due to scheduling conflicts and an unexpectedly long trip to England. I remind myself to email my new sister in law and assure her that her new husband’s heart murmour is a genetic glitch, that a stroke or heart attack are probably still light years away. I scribble on the back of my hand to remind myself to pick up spouse’s prescriptions, diabetes and high cholesterol. How will I ever get the bed stripped, washed and re-made before tonight after yet another accident?

The homework schedule is backed up due to an unexpected bonus, a rogue moment of spontaneity that bowled us over, instigated by the chance hearing of a couple of bars of a pop song. My son climbed on the counter to turn off the radio, but not before the little one jumped off his chair to break dance on the floorboards. The break in routine, also broke the thread of concentration. “Didya see him mom? He’s actually quite good,” she comments with genuine surprise. “Hey do it again, why dontcha?” Not only did he listen to her request, but willingly obliged, a silent re-run. She joined him on the floorboards, “teach me why dontcha, come one, you can do it?” They all joined in, all three of them, a hybrid cross over between Cossack dancers and inebriated rabbits on ice.

I wince to recall my international telephone call home to my dad. It’s a reaction grafted onto the guilt of a giggle. I wanted to check to see how my mum’s hysterectomy surgery went, eight hours ahead of where we now, marking time in the waiting room. “Well you have to understand that it was a big operation for your mother at her age,” he soothed. “The hospital haven’t telephoned to tell us anything or course, they’re an absolute shower.”
“Did you go up to visit dad?”
“Visit mum in the hospital?”
“Oh no. She won’t be up to having visitors until tomorrow, maybe. A lobotomy is a serious business you know.” I blanch and pinch my nose to stop the snort’s escape.

As my mother would say ‘life is simple when it is boring.’ The niggly little trials and tribulations of everyday life, can drag us down if we let them. Few of us enjoy the life we believe we so richly deserve or anticipate.

I can’t tell you what kind of a life style we ‘ought’ to have had, I can only tell you a little bit about our lives with autism. Whatever life you have, be sure that if you expect misery, it shall surely find you. For my own part, I much prefer our own boring little version to a more newsworthy alternative.

All anyone wants is a long life time of the little ordinaries. No-one should steal away the ordinaries, both Katies own and the love she shared with her family.

I wish for you, a very ordinary day of life.

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