Friday, July 27, 2012

He's Not Ready. Yet.

Last week for the kids was very busy: Vacation Bible School with 100+ other children every morning from 9-12 at our church, then swimming lessons every afternoon (minus the thunderstorms) from 5-6:30. Never mind Ethan's play group on Wednesday in the middle of the day.

Every day, as I saw Anna run off to meet her little friend or to jump into the pool effortlessly, I thought again how easy most things have been for her. Or maybe I mean us. Don't get me wrong: she can be shy; she has her moments. But overwhelmingly, bringing Anna to VBS or swimming means just signing the papers, dropping her off and waving a goodbye that she never sees because she's off, disappeared, ready to have fun.

Every day, I remembered last year; I remembered how important it is to not forget. Last year I wasn't sure Ethan would be up for the four-year-old swimming class with typical kids when this summer rolled around. Last year Ethan did VBS but cried the first day, clinging to my legs, and had a special helper sit with him most days, holding him close through the music because it was too loud and overwhelming.

This week both kids attended VBS and Ethan was no longer frightened but rather eager to go. This week both kids went to swimming for the first time. Anna got passed up to the next class (this year's class was a repeat), and so did Ethan. He's starting to swim! He loved the class! For the most part, he was able to follow directions and hold his own just fine.

I must remember these things and give thanks for them, when I look at those areas in which Ethan's progress is still agonizingly slow.

"Did you play with anyone at VBS?" I asked one day.

"No, I played lonely," Ethan responded. (This is his word for alone. In this context he was not using it in a negative way in the least.).

"Which toys did you play with?" I asked another day, referring to the time spent with the preschool kids down in the church's nursery.

"I don't know," he answered. "The teacher said 'no touching the buttons on the CD player.'"

I pictured it, Ethan alone, playing with his first love, a CD player, while the other kids giggled and pushed around the cars or tossed around a ball. He often brings his CD player down from his room and plugs it in in different places around the house. This is fun for him -- not setting up trains or building with Legos.

I saw Ethan have one interaction with another child at VBS. It was to inform him that the baby toy he was trying to play with needed batteries. I can't help but smile at that one. When we're at different people's houses, he looks not for kids or toys but for fans to plug in or turn on and off. I think it helps soothe his anxiety.

At swimming, I encouraged him to greet his little friend, the one who's house we've visited before. I watched them. I watched Ethan amaze me by jumping fearlessly into the pool, by dipping his head under and retrieving rings. Anna was scared to do that at his age.

I also watched him not once make an overture to anyone else there. He tolerated them, yes. But he didn't seem to particularly care that the other kids were there.

"These thing are not like a switch going on and off," his developmental pediatrician said a few months back, speaking of the changes I hoped to see in him relating to play and socializing. "Picture it more like beach erosion."

And while I don't necessarily care for the image of wearing and rubbing away at an essential part of who my son is, I know what she meant.

The core challenges of autism can't be changed or even improved with a snap of one's fingers. In just a few months' time Ethan has started recognizing sight words and can almost tell time, but the social piece

With that slow movement comes the impatience on my end, and the tension between how much we do to help him learn and grow vs. accepting his very real challenges and really, just accepting him.

If I followed my Floortime book to a "T" for example, I'd be playing one-on-one with Ethan for up to six 20-minute sessions a day. I'd limit his screen time to less than an hour.

But to whose detriment? Do I do that and ignore my daughter...myself?

This, I think, is the big question facing so many special needs parents. There is this delicate balance between letting go and giving up. They are not the same. Somewhere in the middle resides God's grace.

I can hold on to that, and to the very many things for which I am thankful.

Then in the midst of that, I can trust we are held. And I can still hold on to hope.

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