Passing through the eye of the needle

“I want to believe in the misdiagnosed but see: he is not altogether well. He escapes to a room in his head like a ship to sea, even as the gulls fly above, imploring: land, land.  I am earth beneath storm, the air inside a snapped reed.  I scream my helpless anger into an empty room.”

– Beth Kephart (A Slant of Sun)

It was eight years ago this month, January 17, 2002,  that we finally got the answer to a question my husband and I had been asking ourselves since Zachary was just 10 months old – Is he “all right?” Back then, being “all right” was the answer we wanted despite all evidence to the contrary.

We had gone the familiar route – hearing tests, assessments for early intervention, numerous trips to doctors and fruitless internet searches. Zach had been “evaluated” from every angle – and now, in the small office of a very nice licensed psychologist we would have our worst fears confirmed, our path forever altered. But, that dreaded diagnosis gave us a place to begin.

Getting in the game is, for many ASD parents, the hardest part. Labels, constructs, pigeon-holes – all are fashioned so that parents can qualify for special therapies, insurance coverage, placements.  Classifying, naming, qualifying that otherworldliness each of our kids possess is left to the professionals – doctors, therapists, educators – even legislators. The toughest job is the navigating;  That is left to us parents and they don’t hand us a road map.

Imagine being dropped on a lonely highway in the middle of nowhere and having only your wits to find your way. That is where most of us start out – thumbless, clueless – hitchhiking along to an undetermined destination.  I believe it is easier for the biblical camel to pass through the eye of a needle than for an ASD parent to enter the kingdom of  Autism. But, times are changing and there is much more available to today’s parents.

This morning, as an experiment, I googled “autism services” for my area of Virginia and the search yielded 27,600 results in .34 seconds – and when I googled “autism services” alone, my computer spat out 6,810,000 in .26 seconds.

Progress? Maybe. But the sheer number of routes are intimidating and most of us aren’t hoping to stay long. We have a “temporary visa” mentality – get in, get out – more of a rescue mission really.

I was definitely hoping to keep my visit short, in fact I felt instructed to do so. When Zach was initially diagnosed his psychological evaluation described his verbal skills with a caveat – that while he was expanding his vocabulary and had the capacity for appropriate interaction, this was typically “fleeting.” His skills at that time represented “an instructional window that if appropriately utilized, is strongly predictive of a good outcome.”

Reading that caused a tremor of panic inside me, because this isn’t the kind of window that stays open, it’s the kind that someone paints shut when you’re not looking. 

For a very long time after “D-Day” we did what we thought we should for Zachary – he ceased being our son during that lost time and became our project. We even bought a sturdy plastic file box where we housed all our war plans.   We pursued every avenue of therapy, diet and medicine with the urgency and fervor of the newly converted.

Some helped, some didn’t. Most didn’t. The only thing we knew for certain was how miserable we all were trying to figure it out. That fleeting window was what we focused on. In the end, Zachary was the only one who could show us how to keep it open. When we quit struggling out of exhaustion, with nothing but our helpless love to give him, he let us follow. He showed us more and more of the person he continues to become today.

The reality of the window is that Zachary will always be on the other side of it. I don’t have the power to pull him back through it, nor does he need me too. But it isn’t shut – I can follow him through it; I can let him show me around. I can relax in this new, exotic land. My guide is from here, he belongs here and there is so much he can teach me if I let him.

Zachary’s salvation is not something I can control, things will unfold as they should, and we will survive. In the words of Mother Teresa We can do no great things, only small things with great love. And that is enough.