A parallel universe or alternative reality is a hypothetical self-contained separate reality coexisting with one’s own. – Wikipedia
When I am at home with Troy, so many moments are filled with joy. I love the grin on his face when he knows he has accomplished something new. For example, last year, we spent a great deal of time teaching Troy to pull his comforter up when he entered into his bed. On many nights or mornings, I would find him in the fetal position, cold. Or laying face down into the pillow, his arms and hands under him, to get himself warm. And though I check on him before I go to bed, like many of us we toss and turn until there are no covers left on us. The difference is, we know instinctively what to do. Troy did not. When he realized he could do this simple task, it was clear he was so proud of himself.
Troy can put his cup and plate in the sink. He can eat 50% of his breakfast by himself, while I tear around the house, washing his eye glasses, getting his shoes/boots on, record on voice device, make sure my bag is ready, etc. He can help set the table with his step-brother, Conner. (Conner has learned not to use the ketchup bottle as a hockey puck across the table). Or having Troy understand the concept of first, you had a shower, next you dry yourself off, then you hand me your towel. Or watching him struggle putting his towel on a rack and when it sticks to the peg, here comes the big goofy grin that makes me laugh.
All these tasks are so simple to you and me and even many disabled children, but not for Troy. Each one has taken months of focused work and patience. Each success brings me joy for his newly gained independent act and for the pride upon his face that he did it and we are so proud of him.
Then there is my other reality. The one to which we go out in public. I don’t take Troy to Special Olympics anymore because I find myself too emotional. I watch children/young adults who play basketball together, kick a soccer ball, play tag, and all do it pretty independently. When I am there, an overwhelming sadness happens to me and though I see Troy laughing and participating, I also see all the things he can’t do. Public outings are difficult to. Some people just smile or give me a nod when they see Troy and I walking through a mall or having a treat at Tim Hortons, but most people feel a need to stare. I don’t know what really goes through their mind, but I imagine “why is she holding that tall boy’s hand”, “why is he making weird noises and grunts”, or “why is he flapping his arms”. I don’t like this ‘centre-stage’ feeling when we are out in public. There are times I would love Troy to wear a t-shirt that says “I’m Autistic, what’s your problem?”, but then again he isn’t even Autistic diagnosed.
I know I should be better than this. I know I should handle things differently and not let other’s ignorances bother me or the lack of Troy’s abilities affect me, but I am human and at times this journey fills me with an undescrible sadness. Tenticle-like grief wraps itself around my heart and consumes me, while I choke back tears.
As a society, we have become more tolerant and yet still so many remain ignorant. If you recall, Troy’s own Nana asked me ‘why i hadn’t considered institutionalizing him”. Most of us want to help bring out the best in our children. To watch them thrive and grow and become their own persons. And though this is just as true in Troy’s case, the reality is, he will never be independent and he will never stop the general public from staring.
I HATE his condition with a passion. I want him to drive a car, kiss a girl, go dancing, hold a job and have children one day. But the reality is, he won’t. I LOVE he teaches me patience, acceptance and tolerance. So each day, I go through the parallel universe of my own life, feeling a bit like this.
It has only been recently, I have been able to wrap my head around the concept of Parallel Universes. I believe it was the trilogy of The Golden Compass, which enabled me to grasp the idea. Science was never my thing, and there is a teacher or two out there that will vouch for that statement. The more I read on the subject, in lay-man terms of course, the greater apprciation I have for the concept. I envy the possession of the knife in The Golden Compass and wish I held one myself on ocassion.
We here on earth are one piece of a magnificent puzzle and much like Autism, we are only beginning to scrape the surface in knowledge of the subject matter.