Labeling It

Here's a moment of pure, unadulterated joy. The twins (C on the left, M on the right) seem to be growing closer lately. Part of it may be more intensive group play during C's ABA therapy, but I suspect another reason is that we've begun to explain to M what is happening with his brother.

We've identified it simply as "C's ASD," and it's a label we use to explain things both confusing and wonderful. In some ways, M seems to be adopting the role of big brother (even though he's actually four minutes younger): he's become more affectionate and attentive toward C and, at times, intensely protective. Giving C's autism a label, without going into too much detail, seems to be demystifying it for M, turning a frightening unknown into an understandable known.

It raises the question, of course: how and when do we introduce this label to C? When would he even understand it?

Trying

A quick thought my wife shared today: "There are days when I really see how hard this boy works to focus his brain enough to hold the spoon and bring it to his mouth with cereal on it, to sit still and put his feet through his pant leg, to bring his face towards his father's and say 'bye daddy.' I watch him trudge off to school so trustingly on the school bus, the noise of the world and the street so hard on him. My love for this boy just slays me."

I have to constantly remind myself how hard C is trying, even when it appears outwardly that he is not. His inability to focus, to settle, to attend, to listen, to respond, is not indicative of a desire to be disconnected, but an inability to remain connected.

Fear Itself

Losing one's hair can have its advantages: in my case, it's been accompanied by the understanding that some emotions are mostly useless and often harmful. Here I refer in particular to regret and fear.

As parents of a child on the spectrum, we regret not noticing the signs earlier, or losing our temper, or feeling ashamed. We fear a future of loneliness and despair, of financial ruin, or simply the bullies lying in wait.

But that's no way to live. I try to learn from my regrets and move on quickly. As the Buddhists say, acknowledge the thought like holding onto a balloon momentarily, then let it float away.

As for fear, I can only do so much to control what could or might be, and dwelling in anxiety often means missing all the good that's happening here and now.

I was inspired by this excellent post. Give it a read.

What Autism Sounds Like

Not having autism myself, I can't attest to the accuracy of this audio clip. What I can say is that it supports what I see in my son, that is, someone who finds the world distracting and loud. Tip: To play the clip below, hover your mouse over the black box until you see the "play" icon. It's a blank YouTube video.