Standing Up

2014-04-21-feet@2x

I read and answer questions in various autism-related communities. Recently, someone in one of those communities asked me to respond to this question:

What are the goals of the autism acceptance movement?

I don’t consider myself part of any movement, and I don’t have autism myself, but I thought I had something to say on the issue. Here’s how I responded:

“I want help for my son, but I do not want to cure him. I want him to have the same opportunities as his neurotypical twin, but I also respect and appreciate the differences between the two.

“I know some parents of children on the spectrum want to ‘cure’ or ‘recover’ their children, but I also know many parents who have no interest in this approach. Like me, they just want acceptance and acknowledgement. They want communities and systems that are supportive of them and their children.

“Therefore, my part in any kind of movement is to stand up as a parent who accepts his son’s autism, even when it’s challenging, and to state my belief that autism is a distinct neurological condition, not a manmade disease, infection, or form of toxic damage.

“I want to share with others what I believe: that autism has always been with us, and that any increase in numbers is due to a broadening of definitions, greater awareness, and improved early intervention services.”

Quiet Time

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Beautiful weather outside at last, and so sensory gym was quiet today. In fact, for most of the time we were there, C and I were the only guests.

Lonely? Bored? Not at all. C was joyous, silly, and connecting like crazy. I was reminded again that this boy loves the quiet, loves the space it gives him to be himself.

Add more people, more noise, more bustle, and he just becomes much more disconnected.

It also reminded me that we need to quiet our lives, literally and figuratively. He needs it, and we need it, too.

Assume Awareness

2014-04-02-cblue@2x

Today is World Autism Awareness Day, so here’s what I’ve learned about awareness over the past couple of years: my son with autism is very aware.

He’s aware of me, he’s aware of you. He’s aware of a lot more than he lets on.

He might appear distracted, aloof, in his own world; he might not answer when spoken to; he might chatter on seemingly oblivious to whether we’re listening or not.

But rest assured: he’s taking it in, this frenetic, loud world. If you get to know him, you’ll see the signs, hear the words that demonstrate this awareness.

And that’s another part of it: will you take his apparent lack of awareness as a sign that he doesn’t want to connect? Or will you take a moment to say hello, acknowledge his existence, even if it doesn’t come with an immediate payoff? Because, trust me: he’s aware of your efforts (and so are we).

So, for this Autism Awareness Day, I’d like to suggest we all assume awareness.

By the Numbers

C-scootering@2x

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!”

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.

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

2014-03-03-cdrawing@2x

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

2014-02-03-piano@2x

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

dancing-fingers@2x

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

C in the leaves

“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.