13 hours ago
Wednesday, November 2, 2016
The gigantic question hanging over my head about his future
Last month, our district liaison told me that we could start looking at high schools for Max in January. No, I said, I wanted to begin in the fall, to give myself enough time. And so I jumped right in.
We only have a handful of options to choose from, so the time and effort involved in doing visits and intakes is not that consuming. But already I'm realizing how hard the decision is going to be, and it has been weighing on my mind.
Max needs a good academic program that works for his learning style. He needs good physical, speech and occupational therapies, along with a school that embraces augmentative communication since Max's clearest means of communicating is with his iPad speech app. He needs to grow his life skills. He needs all of that. But most of all, he needs to be in a school that truly sees the potential of its students, and holds them to realistic yet high expectations.
Some of these schools, which go up to age 21, have job programs for students. Graduates have gone on to work in company cafés, cleaning tables. They bag groceries at supermarkets. They tidy up clothing stores. That kind of work is gainful employment for many. But it is not the work I envisioned a child of mine doing, and it's hard to wrap my head around it. Years ago, as I sat in the Whole Foods food court, I watched a woman with Down syndrome cleaning tables and it distressed me to think that could be Max's future.
Those feelings are surging in force and keeping me up at night. If we send Max to a certain kind of school, are we fating him to that sort of work?
I am going to look at public schools, too. Having Max around typically developing peers could be tremendous for his growth. It would also enable him to leave the special needs hothouse he has been living in—and flourishing in, to be sure, but it is a rarified environment.
If I want Max to someday exist in the real world, which I do, it seems like that should start in high school. But is there one that can fulfill Max's many needs? This week, our district social worker let me know that one of the public schools I was interested in has concerns about Max having a typical high-school day, which is their model.
I haven't felt this scared about Max's future since he was a baby, and we didn't know whether he would walk or talk, what sort of cognitive impairment he might have, or anything about what the future hold. But now I have answers. He has his challenges, but he is bright and oh-so-social and capable and abled and full of potential. And I desperately want to find a school that will help him be his best self...and more.
Posted by Ellen Seidman at 6:35 AM