Home visit

My 17 year-old son is coming home to visit this weekend, as he does every two or three weeks. It takes a day to prepare for a weekend visit, and a day to recover; the preparation is logistical, the recovery is emotional.

Terry has severe autism. He speaks in one and two word combinations, supplemented by sign language, and the use of a voice-output device called a ChatPC. He can be aggressive and self-injurious, and has severe obsessive-compulsive disorder. Indeed, it is usually a thwarted OCD issue that triggers aggression or self-injurious behaviors (SIBs.) These issues include an inability to let anyone move anything or rearranging dust specks on the floor or ground (including while crossing the street).

Nonetheless, Terry, in many ways, lives a rich life. He enjoys biking, ice skating, swimming, and other activities. He has recently discovered watching Thomas the Tank Engine clips on YouTube. But he does not spontaneously initiate most activities, and those he does frequently spiral into OCD binges. As a result he needs and welcomes external structure in the form of picture schedules to give him something to do, and a sticker system to help him control his reactions.

Terry's need for structure, coupled with an attention span that varies from 30 seconds to 20 minutes, means that a weekend home visit requires organizing literally dozens of activities, ranging from playing with play doh to going out to dinner. Each activity has its own picture, and all required materials must be immediately at hand when embarking on it. There can be no fumbling to find the Lincoln Logs, there must be no danger that the restaurant is closed. When Terry goes to bed I am totally drained, but must remember to put together the new schedule for the morning before I go to bed.

On Monday morning, we are always late for school as Terry drags out the routine to wrap his mind around the return to school. I try to keep him moving forward without pushing too hard, which would only result in a meltdown. Monday is difficult for anyone, but more so when know you know you won't be back for a while. After I finally drop him at school, I inevitably stop at Dunkin' Donuts or Bickfords to begin the process of decompression and re-entry.

I love my son, and I treasure the look of joy on his face when he is involved in something he loves. But the reality is that he needs a staff.