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Fight, Not Flight

Sep 28, 12 Fight, Not Flight

Two years ago, we moved our family from Los Angeles, California, to British Columbia, just South of Vancouver.  We knew the autism “system” would be different in a new country, but we had no idea what we had in store for us.  My next few posts are the story of how we finally navigated the Canadian funding maze last Spring, and my thoughts on the process.

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I’ve had a lot of responses to my post about Jack’s “new” diagnosis, and I’ve been thinking about what it is that’s bothering me the most. One comment hit it on the head:

“It sounds like your son has adapted to may things and so those who tested him determined his diagnosis could be ‘updated’. I think the autistic traits remain, the kiddos just learn to blend in to what is expected of them socially, etc.”

I read this and it struck me. I’m afraid, because, in my mind, Jack hasn’t evolved out of autism. I believe he’s every bit as autistic as the day he was diagnosed, he’s just older.

Jack is a brilliant product of Early Intervention, which means we threw all kinds of therapies at him as quickly as possible.  And you know what?  They worked. But he still has autism, and that means several things.

It means that while he keeps up with his peers in school in terms of schoolwork, he simply cannot function in a school setting without constant supervision (he has a full-time SEA).  His teacher is out for the rest of the school year due to surgery, and I fully expect Jack to backslide until he gets used to the change.*

Jack is easily overwhelmed by stimuli, and we have to plan our lives around that.  We rarely do things after school, as he needs that time to decompress from his day.  There are many places we cannot go, because of various things that bother/irritate/terrify him (like the buzzers at the hockey rink adjacent to the indoor playground).

He is hyper verbal, to the point that he thinks every conversation is directed at him, and if he has something to say, he will do anything, including screaming at the top of his lungs, until he gets the floor. We’ve recently realized that giving him simple math problems will buy us enough time to finish our quick discussion about what to get at the store.

Jack has to be constantly engaged at home or he gets restless.  This can mean anything from doing laps of the house to throwing his brothers down the stairs for sport.  His aggression has increased with his age, and in a house full of boys, that’s a scary prospect.

Jack does not understand social boundaries. He will hug and touch complete strangers, and not grasp why it’s wrong.  This particular behavior really scares me.

I honestly don’t believe Jack is “out of autism”.  I think he’s smarter than the ADOS.  I think he had a “good” day for his assessment.  I can tell you if they had assessed him based on his behavior on the way home, there would have been no question.

I identify with autism because I am an autism mom.  Yes, my child is high functioning, but he still has autism.  Every day brings a new challenge, and every day is exhausting. Jack and I both need the services he’s getting, and then some.  I’ve been waiting patiently for a year and a half to re-start his home-based ABA therapy, and the prospect of never getting it wrenches my stomach.

I realize now I’m clinging to the autism label as a lifeline, because that’s what it is. I know my child responds to therapies, that part is obvious.  The prospect of facing a future without support, though, terrifies me.

I feel exactly the same way I did when Jack was initially diagnosed, except now there’s an additional layer of panic. I cannot let autism be taken away from us.  I just can’t.

A delicate balance.
Image Credit: Wendy K. Baskin

 

* And he did. Jack’s class went through several substitute teachers until the end of the school year, and his work beat a steady decline.  His Grade Two class this year only has one teacher, and he has already responded positively. Consistency is key with autism.

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  • Anonymous

    Problem is, we have socialised medicine. What that means is that everyone in the health care industry here is trying to *not* take on new patients or to expand treatment for existing patients. That way, they minimise their budget, which is not determined by them, but by politicians and bureaucrats in Victoria and Ottawa. You have come from a system wherein the health care industry *wants* to serve you, because another patient means more income. Another patient in Canada means that there is fewer resources to provide for the remaining patients. Doctors and support staff are always having to do triage, and I don’t envy them their responsibilities.
    You say south of yvr. You might want to check out Glen Eden School, in the Marpole district of Vancouver. My family has personal experience of it, and rank it just excellent.