April 13, 2012
By Jeff Stimpson
I tried to line stuff up for my 13-year-old son Alex last Thanksgiving break, the break I've come to regard as "the four-day Sahara."
"The holidays book up well in advance - parents jump right on those school holidays," said the lady who runs the overnight-respite program. I worked for months to get Alex into this program. I called her in early October about overnights through the end of the calendar year.
This Sahara is tough. By Saturday morning Alex is saying, "David's coming? Rosa's coming? David's coming?" as he slips on his shoes, hoodie and backpack. "Take a walk," he also says. "Wanna walk!" David and Rosa are, well, "companions" I guess you'd call them if - like us - your son was too old for a "babysitter."
Autism doesn't take a four-day weekend. By the morning of Black Friday, Alex is bored out of his mind. He doesn't want to do letters with me, he doesn't want to pick up his room or put laundry away (jobs he usually throws himself into). He yelps into his iPad. He wants to go out, hour after hour. I take him out. He wants to go out immediately after we come home, usually with somebody besides mom and dad.
The big hope for Thanksgiving break is overnight respite, a terrific program in which guys like Alex are taken by their fathers to a nondescript apartment building on West 95th Street near the river, past the security guard who takes one look at Alex and says "sixth floor," and up to a three-bedroom where Alex could stay for days and nights, gaining his independence while his mom and I catch up on our sleep.
Alex crapped out of this program last spring by bolting. Then the supervisor worked with me to let him go there for daytimes during the last week of August. He did well. So well, I guess, that the second morning the supervisor called me and said they could take him for four days, until Labor Day eve. I was tempted, but he wasn't ready, I told her. From that offer I came away with the idea that holidays are clear for vacancies in overnight respite. I come away with the idea that most families with children with autism have better parents than Alex does.
Parents jump right on those school holidays. "What's Alex's schedule in February?" the supervisor asks. I see that adult programs take finagling, unlike the children's programs that Alex often just slipped into. Stuff for grown-ups - like the one he's growing into - require thought, planning, more thought, and frightening amount of plain old luck.
Jeff Stimpson lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”
Topics:Living with Autism
Please login or register before you comment. Click here to login or register.