By the Numbers

Today C led me around the neighborhood on his scooter. Along the way, he counted cracks in the sidewalk, calling them out quietly to himself. "75. 76. 77." When I snapped the photo above, we were in the 400 range, and when we got home, he yelped with joy, "One thousand one hundred and fifty-nine cracks!"

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C loves numbers and anything to do with numbers. Yesterday in Target, seeing a large Dr. Seuss book, he said, "How many pages?" "345," I said. "I want it!" With such enthusiasm, how could I resist? In the checkout line, he told me cheerily that this book had more pages than any of his other books.

Of course it would be nice if he wanted the book because of the story, but numbers are his way into things. Far from being a dead end, numbers are often just the starting point.

For example, he has a book filled with over 200 illustrations of birds. He spends hours poring over the book, and if you say any number, he can tell you the name of the bird. If you tell him the name of any bird, he can tell you the number. Show him just the illustration, and he can tell you the name and the number. But it doesn't end there: recently his babysitter took him to the zoo, and he was thrilled to see some of the actual living, breathing birds. He had made the connection.

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Sometimes they tell you that you should be careful about letting children with autism "stim out" or "obsess" over things like numbers, systems, maps, etc., and I guess sometimes they're right. But not always. Sometimes, just like with any child, it's not so much an obsession as a passion. And aren't we all told to follow our passion?

Respecting a Birthday Wish

This year, unlike years past, we asked our twins to help create a guest list for their birthday party. M, our neurotypical guy, had a ready list of friends and classmates. In fact, he had more than we could reasonably accommodate.

C’s list, however, was decidedly shorter: “No one.” C is rarely so declarative, so we tried again a few more times, only to get the same response: “No one.”

We would ask around the question. “Do you have friends you like?” “Yes.” “Like who?” Names were offered. “Don't you want to invite them to your party?” “I don't.”

We know that C likes other children, even though he has yet to find meaningful ways to interact with them. But we also know he’s been having a lot of anxiety in group situations lately, retreating ever more into himself as the group grows in size.

We decided to respect his wish; we felt it was important for him to feel he was heard and his request honored. His birthday, after all, is his special day, not ours.

So we had a birthday party for the twins, and we invited friends — M’s friends. C, for his part, had a great time doing what he likes to do: running, laughing, jumping, rolling around. No pressure to socialize, no need to be there for someone else.

I hope that one day C will find it easier — and more pleasurable — to have friends. Until then, he will know that his wishes and needs matter, at least to us.

Incommunicado

For those of you who follow this blog, I apologize for the dearth of posts lately. It’s not that I don’t have anything to say — I do — but more that life has gotten in the way.

For example, while being mired in the muck of trying to find a school for C to attend next year, M (C’s twin) wound up in the hospital for 6 days with an acute liver condition. (A somewhat inconclusive biopsy is pointing toward a lifelong serious health condition, and he’s been put on a transplant list.)

Add that to the normal insanity of our Modern Lives and, well, I simply haven’t had time to post much. But I’m hoping that will change in 2014, as there’s a lot I’d like to share.

To those of you who have written me notes asking about the future of the blog, thank you.

More soon, I promise.

An Incomplete Picture

In a few hours we’ll be meeting with the neuropsychologist who has just completed a weeks long, detailed evaluation of our son, the purpose of which will be to help us (and the DOE) determine the best path forward for his education and, to some extent, his life.

C’s had evaluations in the past, and while there’s often some very nice stuff reported, there’s a lot of stuff that’s very hard to hear...stuff that would fill any parent with anxiety and despair.

And yet, today, as I wait to hear the results of the most extensive evaluation he’s had to date, I'm feeling surprisingly (to me, at least) calm.

I’ve learned that no evaluation paints a complete portrait of my son. No evaluation can capture the amazing, wonderful bits of his personality that will never come out in a controlled setting like a psychological evaluation, but which pop up every few minutes during everyday life.

So, yeah: this evaluation is going to be difficult and gut-wrenching. But there's no way I’ll let it change my opinion of my boy.

The Caterpillar

"There is nothing in a caterpillar that tells you it's going to be a butterfly." — Buckminster Fuller

Facing challenges at the moment — schools, evaluations, finances — I reflect on the words of the psychologist who was the first to give us C's autism diagnosis: "No one can tell you where your son will be in ten years, ten months, ten weeks, or even ten days. These children are full of surprises."

Just like the caterpillar.