Thursday, January 01, 2009

With Apologies to Mrs. H

I lay next to Andy, waiting for him to sleep. If I move too soon, we must start over from scratch, so I try to stay still. From the next room wafts the whispers, squeaks, squeals, and giggles of another sleepless boy. Most of it is soundified, incomprehensible gibberish, a steady stream of motor-sound and oral stim. Occasionally I catch a few of what were once words, or the current favorite mantra, which has clung to some thread of meaning, and which Joey finds hilariously funny. Over and over, chanting and giggling, Joey tries to talk himself to sleep.

Christmas break is hard. There is almost no chance of establishing a routine, a pattern from day to day to day to let Joey get his bearings and steer through the jumble of sound, glitter, and cold. I think the lack of daylight affects him, too. We do best with bedtime in spring and fall. In summer, the days are too long; in winter, they are too short. Even the simplest of structure eludes us. Getting up in the morning, he never knows when Dad will have the day off, even if it is mid-week. People may visit the house, which is topsy-turvy and filled with unusual, glittery items that only come out for about a month, sometimes just a week. The weather doesn't help, either; this year, it was 70 degrees one day, 40 degrees the next.

At first, he retreated to his computer, a safe haven of games that always act the same, once you figure out the rules of the game. But with so much to do and see and what-have-you, often there are stretches of unscheduled hours spent in cars, other homes, other places seeing other people and doing other things, all of which are unexpected, no matter how much warning I give him- and sometimes I have little warning myself. Left to self-regulate, sound becomes key. Clicking returns. Mantras- appropriate and otherwise- roar to life with a vengeance. It's the Witching Hour, all day, every day... and this year, for sixteen days (winter break is usually 13-14 days).

I listen to the stream of whispers and giggles. At least he's happy. Or finds it funny. He did fine through Christmas day, then everything began to deteriorate. Mrs. H sent me home a happy, huggy, smiling boy, and I'm going to send her back a echolallic mess.


kristi said...

I know what you mean. I have been trying to keep TC occupied too. It is not easy. :(

Nicki Mann said...

Hopefully once he goes back to school he will snap into the old routine pretty quick! Our schedule has been totally crazy too and Little Bear has been a mess!!!