so…about the boy. {in the beginning}

june, 2012

well. here we are.

new space. new adventure. new and utterly terrifying acts of bravery.

in my head, this all transitions seamlessly – i slide gracefully and articulately into writing about this child that i have protected with Grizzly-bear ferocity for the past 8 years.  i imagine unburdening myself of all the fear and doubt; sharing  the extreme, soaring,  joys as well as  the utter despair and sorrows, with charm and wit and a hefty dose of the humour that keeps me sane.

that’s what i hope for — no promises, though. this could all be a catastrophe of epic proportions.

{ cue aforementioned wit and humour }

so yeah.

this is it.

onward, then.

for those of you that stumble across this space…whether by me dragging you here from elsewhere, or just wandering through on your own chaotic and magical  journey…welcome; welcome to our story….

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I can go as far back as his first birthday party to find evidence that perhaps things were…. different… with Sebastian.

Our family isn’t known for it’s skill in singing, but never has a chorus of “Happy Birthday” been met with hysterical screaming and red-faced histrionics. So, no scrapbook-worthy photos of a cake-smeared baby were to be had. B and I attempted to stage a subsequent event the next day, but apparently the moment had been missed.

He became less and less tolerant of crowds and strangers after that. B attempted to take him to a playgroup when he was about 18 months hold but instead of joining in for patty-cake and sing-a-longs, Sebastian had his hand on the door-knob, screaming to be let out.

From there, we had to give up taking him to grocery stores or shopping malls {no big sacrifice, there} because he would lie down in the middle of the aisle, sobbing, until I scooped him up and carried him out, groceries abandoned, ignoring the tsk, tsk and glares of the people who apparently knew better how to parent my child.

But how could they know, when even I was at a despairing loss with how to carry on?

Instinctively, I knew.

Looking back, I can see that I’ve always known.

But I didn’t always know what.

My only knowledge of autism was head-banging, unreachable children and their heartbroken parents. That, and Rain Man.

Because he was a loving and affectionate child, he couldn’t possibly be autistic, I reasoned with myself.  And I would defend, ferociously, his right to be allowed to be himself. I had never heard of the autism spectrum and it’s many and varied manifestations — that an autistic child can be loving and affectionate with the people he knows and still illicit the traditional,  non-eye-contact approach with strangers.

I was {and am} convinced that, given the time and space and support, that he needed, things would turn out just fine.

I had a pathological degree of terror surrounding what They would do to him/insist upon, if I admitted that there was even the tiniest possibility of him being autistic.

But the time of denial is over. I have had to face down my own demons, my own desperate fears for this child {and myself}, in order to come to a place where we are now pursuing a formal diagnosis.

At some point, years ago, B and I decided not to have him assessed for Whatever Wasn’t “Normal” about him. I was convinced, and B agreed,  that a label would put him in a box and assign him limitations – limitations that I simply don’t believe in. And, to be honest, I have a deep mistrust of the System.  When I took him to a free screening to assess his speech-delay, the self-important and utterly disengaged speech therapist showed no interest in how her suggestions of my interfering in his lining up of his Thomas the Tank Engine trains with Vroom Vroom noises would send him into orbit. What kind of mother was I to not be able to impose in such a  simple way? Clearly, I was ineffective and uncommitted. But things have changed as he gets older and we are now at the point where I believe a diagnosis can be his wings, rather than his shackles.

Of course it’s all just hoops to be jumped through — whatever string of letters they want to attach to him, he is still as he has always been: charming, affectionate, brilliant and exasperating. He loves cherry tomatoes, cucumber with white sprinkles {salt}, playing outdoors in his pajamas and I Spy books. He hates singing {still}, taking a bath, loud noises, crowds and studio photographers.

This is simply the beginning of everything.

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So yeah, I don’t know what I truly hope to achieve here….a chronicle of our journey, a reminder to myself of  how far we’ve come and how infinite the potential of this child and others like him.

Maybe part of it, too, is that I still see so much harmful language and assumption attached to these kids — how so much emphasis is made on assimilation rather than integration,  how so few properly trained teachers/support personnel seem to exist and how incredibly difficult it is to find and access resources for those of us who may prefer to continue to have our children learn at home.

Perhaps, too, that although autism has more of a voice in the world since those days of the Merck Medical Manual, I believe it needs different voices; voices that advocate for gentleness and grace, for a belief in the infinite potential of these children that meets them where they are, not where they ought to be.

I believe it’s time to add my voice to that chorus, because it’s never too late, or too soon. There is only now.

 

ps. i’m still rearranging the furniture here…this is my first venture into WordPress…so bear with the mess. 😉