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.

October 2012 Links

I'd hoped to post these before October was over, but Hurricane Sandy slowed me down a bit. Nonetheless, here are some interesting links I've run across in the past month.

In other news, we've received final legal approval for our autism app designed to help parents understand signs and symptoms. Hopefully it will be available in the iTunes store later this month (for free, of course).

Judged

Some of the looks we get:

  • "Why is your child still in diapers?"
  • "Why is your child screaming and writhing and not listening to you at all?"
  • "Why is your child talking nonsense and making weird sounds so loudly?"
  • "Why isn't your child acknowledging my child?"
  • "Why won't your child respond to me?"
  • "Why is your child lying in the middle of the floor?"
  • "Why is your child making that high-pitched screech?"
  • "What is wrong with your child?"

There we are, in the middle of a crowded cafe. Should've known better; C often has a hard time in group situations unless there is a quiet corner or other safe spot to which he can retreat. Still, we've been housebound for days because of Hurricane Sandy, and it seemed like a good idea to try to get out for a bit.

Wrong. It wasn't pretty. So, we pack it in before we even get our food or coffee, and carry a still-screaming (and hitting / kicking) preschooler back home. Once home, however, there's our little guy again. Bright-eyed, all smiles, humming his favorite song…peaceful and happy in our quiet apartment. And there we are, bedraggled and a little heartbroken…and feeling very judged.

I don't fault people for their stares. They don't know what's going on. They don't know why our son has suddenly and inexplicably gone off the rails, why his tantrums are so…weird, or why we look like we're on the verge of a nervous breakdown. They don't know that this isn't a normal toddler meltdown because it carries the emotional freight of fear and anxiety that Every Day Will Be Like This Forever.

In short, they don't know it's autism.

I imagine that once we've gone, they go back to their pleasant parental chatter while their little ones return to their joyful play. Maybe they think we're terrible parents. Maybe they know something is different and think, "I'm glad that's not me." Or maybe they don't really care.

All I know is that in the moment, when we're struggling to regain some semblance of normalcy, their looks bear down on us. I want to ask them to look away, to give us our moment, to leave us alone.

That's completely unreasonable, I know. It's not their fault; they're not doing anything wrong.

But neither is my son.

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Sleep, Please.

Like many children with autism, C has sleep issues.

Lately he's been waking up in the middle of the night, completely out of control and unable to settle himself. Getting him to sleep has also been more problematic than usual — and that's saying something!

After bath, I swing him in my arms to settle his vestibular system; it helps calm him, but since he's nearly 40 lbs, and he really likes to swing, it's no easy task. I give out at about 50 swings and need to take a break. (We're looking into a doorway swing.) We've also taken to letting his twin fall asleep in our bed, since C's nighttime freak-outs were frightening him.

If C wakes up in the middle of the night, S will often hold him across her knees and rock him back and forth, sometimes for 1-2 hours. Needless to say, we're pretty trashed most days.

Still, there are bright spots: hearing about our ongoing sleep issues, a good friend — who also happens to live across the street — sent me the following text:

"I will have my phone next to me throughout the night — if you and S would like a hand anytime, text and I will come to your pad."

I may not take him up on the offer — he has a family of his own! — but I'll sleep easier knowing we have friends like this.