Wednesday, March 4, 2009

Surviving the Snow Day

Here's my advice to parents whose children have been recently diagnosed with autism: get comfortable driving in the snow.

Snow days are tough. Jonah, like most kids on the spectrum, requires a great deal of structure - left to his own devices, he'll just stim in front of his video, raid the kitchen for thousands of calories in snacks, or sneak off to write cryptic messages on the walls. Without school and the aides who help me out after school to keep him busy, it's just me and him for 14 hours.

So we go out.

There's no better time to go out with an autistic child than in the middle of a blizzard. We had a great day - first, we grabbed a canceled appointment at the pediatrician's office and took care of Jonah's annual physical, which was about two months overdue. Then we headed to the Burger King with the best indoor playland, the one that's always crowded, and that I always take the kids to with some hesitation, afraid that one of these days Jonah is going to get stepped on or elbowed while climbing through those plastic tubes above my head and pitch a major fit.

Know how many other families ventured out to Burger King during the middle of the snowstorm?

That's right: zero.

Jonah had the playset all to himself for a good hour and a half. He would climb up, slide down, then announce to me, "99 more times," "98 more times," "97 more times," etc., etc. I think he got to about 52 before the snow stopped, and the roads cleared, and two other families had the nerve to intrude on what both Jonah and I had come to believe was OUR slide. When he started to show his resentment, we left. Still, we managed to break the day into manageable chunks.

If you've inferred from this post that Jonah has regressed somewhat since he left Kennedy Krieger, that would be correct. His psychiatrist has said that Jonah is showing signs of "breakthrough" - which sounds like it should be a good thing but isn't, because it means that his meds are no longer completely controlling his symptoms. And we are seeing more mood cycling than we saw when he was in Baltimore - agitation, crying, hand-biting, and yes, aggression. As much as I had hoped when he came home that we would no longer have to deal with the hitting, we do. It's very frustrating, because the thought of trying different meds that may or may not help, or may or may not make him worse, at home instead of in the controlled environment at Krieger - where, frankly, it was difficult enough - is an overwhelming prospect.

But we'll do it. Fortunately, we have great support, both at home and at school. And fortunately also, in just a few short weeks there'll be no more snow to keep that support away.

1 comment:

Tibbetts Travels in Thailand said...

Hi Amy, I think I've lost touch with you by email as I'm getting error messages with the last address I had. I'd like to be in touch again. Miss you! Please write me at I enjoyed reading through some of your blog today. Good to hear Jonah is back with you though it sounds like it isn't easy. Take care, Jennifer