Capturing Autism

Our family was fortunate enough to spend this New Year’s the same way we’ve spent the last dozen or so: with the same three close friends, home-made cocktails that are usually shades of blue or pink, and food that tastes remarkably good (and not just because of the blue and pink stuff).

We’ve forged our own quirky traditions along the way: Jenga tournaments that culminate in crowning a Jenga Boy or Jenga Girl for the year, ear waxing, small gift exchanges that generally involve chocolate; but the one that all of us insist on every year, even if it’s many hours past midnight, is our “manifest” ceremony. Each of us takes a few quiet moments to write down our wishes for the next year. Then, one by one, we set our little lists on fire and watch them burn while reciting a secret poetic phrase that is supposed to green-light all our hopes and wishes. The friend who brought this annual tradition into our lives then collects the ashes and adds them to the ones of the prior years.

Since just like a birthday wish, you can’t tell anyone what you write or else it will not come true, I dare not divulge my list. But I can speak to what I did not write, which kind of surprised me. As I sat there with pen poised, I thought about writing: “Brooks will improve so dramatically that he will lose his autism spectrum diagnosis.” Hmmm. Certainly something I hope for. Certainly something I practically salivate over, and certainly, a scene I play out often from beginning to end: how the pediatric neurologist tells us and how my husband and I both start to cry. But I couldn’t write it down.

There are a lot of reasons, I think. First of all, I’m someone who makes an extra effort to be grateful for what I’ve got (even if I don’t always manage to do it successfully). Three years ago, when my father’s “flu” turned out to be a swift and mortal cancer, I learned to appreciate what I have. You never know how long you will have it. Would it be asking too much to have my son completely lose his diagnosis, considering how far he’s come? Not so long ago, we weren’t certain he would develop language. My husband and I have a beautiful, affectionate, funny, sometimes-infuriating 5-year-old. With or without a diagnosis, aren’t we lucky just to have him?

Secondly (and I definitely feel guilty about this one), maybe I don’t want to set myself up for disappointment. To be honest, I’m not as sure as I once was that Brooks will actually lose his diagnosis. Last year, when he was still in pre-k and mostly in a special-ed environment, when he was making leap after developmental leap, it seemed almost inevitable that he would mainstream. But this year, even though he’s in a special-ed class, typically-developing kids are everywhere, and the planet-sized gaps between Brooks and his peers are striking. Add to that our recent move and Brooks’s new school, which essentially have functioned as a welcome mat for regression, and I find myself much less optimistic. Certainly not without hope, but 2008 was a tough year.

Third, I don’t want to put pressure, even the featherweight pressure of my flammable wish, on Brooks. Faced with a question with even the slightest whiff of expectation, he quickly resorts to “no” or “I don’t want to talk about it,” even when he clearly knows the answer (which is often the case). Maybe he needs breathing space—I know my husband and I do! Ever since Brooks was 18-months-old, we’ve been working tirelessly to identify how far we can push him. “Too far” is a moving target that needs to be tested and re-tested, and it takes a lot of time and energy. Frankly (guilty, again), we’re tired. Maybe the real truth is that I don’t want to put pressure on myself. If Brooks doesn’t shed his diagnosis, won’t it be our fault? Isn’t now the “sweet spot” of possibility, the time when his young brain is still elastic enough to conquer the repetitive habits and sensory challenges and social weaknesses? Are we simply too exhausted to continue hammering away?

The bottom line is that our basic family foundation seems to be shifting. Although this is always, subtly happening, at times like New Year’s, the rumbles make us see that we need to change in order to move forward. If Brooks loses his diagnosis, this year or any other year, so be it. And if he doesn’t, so be it. I’m officially taking it off my “must happen” list.

What will remain on that list, however, is that the three of us do our best to help one another and to help ourselves. Autism or not, we will love and care for each other; we will continue to teach Brooks how to make friends and how to succeed in the mainstream world. We will temper accepting his limitations with celebrating his strengths, of which he thankfully has an abundance.

And when he grows up, I hope Brooks will spend his New Year’s Eves deriving the same comfort that we do now, from his own small group of close and loyal and lasting friends. Whether they set their wish-lists on fire or not.

This post was originally published on Inisdeschools.org.