Separate Ways

Today was bittersweet.

This is the last day of the twins' co-op preschool. At the end of August they go their separate ways: M will start regular preschool, and C will go to a school for children with developmental disabilities. My anxiety over the ever-widening gulf between them is beginning to feel overwhelming.

As if sensing my fear, C and M were playing like actual siblings tonight. They were near and — more importantly — seemingly aware of one another. They were playing and laughing and, at one point, C reached out and hugged M without prompting. M, instead of pushing C away, leaned into the hug and smiled.

And so I continue to learn to let go, even as I hang on.

Then and Now

Long before C's official diagnosis we knew something was amiss; there were little signs, things that didn't seem quite right. Nothing, however, that we couldn't attribute to his being a sick boy with a rare lung disease. Then, around his second birthday, we noticed what many refer to as 'regression.'

He started to disappear. His expression was vacant. He stopped saying 'hello' and 'goodbye,' 'mommy' and 'daddy.' It seemed like he was vanishing. We'd ask each other if C was even there anymore, a question I've since learned is common among ASD parents. At the time, it was frightening and depressing.

With an official diagnosis came therapy, and lots of it, sometimes 20-30 hours a week. The routine is demanding for C, and means a lot of schedule juggling for us, the burden of which falls to my wife, but the results are worth it.

C still has autism — he always will — and there remains a lot of work to do; nonetheless, we have our son back, and for that we are grateful beyond words.

Making it Count

A little fun combining C's love of organizing, counting, and apricots.

His Own Way

At a friend's apartment, all the kids were running and playing except for C who, in his typically unique way, found a toy box to sit atop. Why not?

The Future That Wasn't

In this lovely NY Times blog post, Joel Yanofsky writes of his family's preparations for their autistic son's impending bar mitzvah. The whole post is humorously touching, but I wanted to cite one line that really hit home:

When you have a child with autism you soon learn that you have to teach him everything, especially things most kids pick up intuitively — from playing with toys to carrying on a simple conversation.

This is it in a nutshell, the thing I keep trying to get at when I describe C's autism. You see, on their own the symptoms sound like a collection of personality quirks: repetitive behaviors, echolalia, lack of social reciprocity, lack of imaginative play, physical tics, etc.

The combined effect of these 'quirks,' however, is that C fundamentally does not understand how to interact with the world. Whereas his neurotypical twin is figuring things out on his own every hour of every day regardless of what we teach him, C needs to learn how to learn, if that makes sense. It's so much more fundamental.

And that is why, when Yanofsky writes this line, he really nails it:

The future is a scary place for every parent, but it’s especially so for the parent of a child with autism. No one has ever been able to tell Cynthia or me with any degree of certainty what our son is capable of.

We were cautioned by a doctor just after my son's diagnosis that we should never look too far into the future. "I've seen children we thought would do quite well who failed to progress," she said, "and I've seen children who were essentially written off who ended up surprising us all."

Sometimes I feel robbed of an imagined future, but I feel fortunate to have such a wonderful present.