Recently we visited our first potential residential school for Alex. The car service whisked us for two hours to a sprinkling of one-story buildings across what no doubt was once a meadow. These schools seem to be mushrooming and expanding; many of the buildings smelled of new lumber and of crisp appliances just released from cartons.
The staff made us welcome, fetched us bottles of water and said Alex would spend most of our visit in a classroom. “No!” said Alex, pulling away. “Car!”
We won’t even go there. Jill sat with him at a classroom computer for a few minutes while I slipped out; soon she followed and we headed to the office of the admissions director, a soft-spoken and kind man named Tommy, to answer questions about medication and behavior until the phone rang.
Tommy picked it up, listened for a moment then turned to us and said, “Alex just vomited in class.”
Jill was first, as usual, to the say the sensible thing. “Alex is not sick…”
Later in our visit I talked to the teacher. “Oh, he did it in the wastebasket,” she reported, sounding kind of proud of Alex, “and afterwards he went into the bathroom to wash his face.”
Just as well: We want to see how new professionals respond to bumps in Alex’s day before we drive away for real and leave him behind.
“Are you considering residential placement options for your loved one?” asks an online primer. “No matter how much we love our child, teen or adult family member, and make every effort to care for her at home, a person with autism may need higher levels of specialized care, supports and supervision, which may better meet their needs in a residential setting. Yet coming to terms about finding safe and suitable residential placement options for your child or loved one outside the home and into a supportive community residence can be distressing and hard to do.”
(Read the whole primer from Child-Autism-Parent Café at http://www.child-autism-parent-cafe.com/residential-placement.html).
Three days later, the school called. “Our staff has met here and we’ve discussed it and we’d like to offer Alex a spot,” Tommy said.
“Can you give me a time frame on that?” I asked. Six months? A year or two?
After all approvals are greenlighted, Tommy said, “about three weeks.” This spring wouldn’t even be over.
Ever work toward and believe in a goal only to reach it and suddenly you’re going to have to live with the whole idea? I grope for excuses to myself. This school pulled the trigger with suspicious speed, for example. (So did my current boss, though, and my job’s near perfect.)
Alex is going to be gone, to this school or to some other, soon. His bed is going to be empty for weeks on end. I’ll no longer see him naked after his evening bath and rocking on his stiff legs, or tell him to hold it down while he whoops to the beat of Elmo on his iPad; I’ll no longer hear him say, “Quiet mouth.”
No more “Dad-dy!” or “Aww, I’m sorry, I’m sorry” while he pats the arm (often hard) of someone who’s upset even if he had nothing to do with making that person upset. When he coughs hard enough to rattle the windows and strain his throat, they won’t be my windows anymore and I won’t hear him say, “Easy easy, calm down.”
I won’t hear Alex again until he comes home for about five weeks of vacation throughout the year. “What are we going to do in those times?” Jill asks. “We don’t get five weeks of vacation.” I never thought of that. I thought how he might wail and cling to my leg as we got ready to drive off, but I never thought Alex would be someone we’d welcome back temporarily – and calmly – during what I tell myself is his period of college.
How else am I supposed to think of it? Residential schools offer what Alex needs most now: a school day of vocational training that doesn’t end at 3 p.m. We tell ourselves this whole campaign is for Alex’s education – as we wend through the process that does seem more and more true to me – and that we must do something to bust what appears to be his growing boredom.
These schools also offer parents sudden peace and quiet back home. A part of me wants that peace, wants to turn his bedroom into a den with a moose head on the wall and a pinball machine in the corner. (Be a little cramped since Ned will still live in there, too, but you get the idea.)
Alex needs college and what I feel is of course no different from what parents of the typically developing feel when kids leave the nest. Still … his rumpled, empty bed. Or the bright white mattress stripped of bedding until one of those five weeks looms.
Janet Grillo, director of the movie Fly Away and a parent of a special-needs boy, called it “that hard moment when I had to recognize what I couldn't control and get the help that my son and I needed.” (Read the Child Mind Institute piece on her decision at http://www.childmind.org/en/posts/articles/2013-10-15-residential-schools-how-help).
Not sure I call it a hard moment (see “pinball machine in the corner”) but only because getting Alex into a school has consumed way more than a moment. The process has stretched out for months. The stages in securing a residential school:
· Wrangling for approval with the various agencies.
· Seeing if the schools got Alex’s information.
· Meeting at the schools. (One school set up an appointment without even checking with us first and then called an hour after the time of the appointment – which we didn’t keep – to chide us. Who in the business world would do that?)
· Assessing programs based on almost no knowledge and no experience, our questions guided only by laymen’s common sense. Is a single bedroom better than a double? Are there alarms on the doors and windows? Any staffer have family members with special needs? Where are all the bathtubs?
· Waiting for the callbacks.
Coming to terms about finding safe and suitable residential placement options for your child …
“Residential” and “suitable education” do describe sending off the typical freshman. “Safe” doesn’t figure much into res-school prepping for the typical, unless your lovely daughter wants to go to college at 1 a.m. in the South Bronx.
As if perfectly typical, Alex is going in a new way into the world. We have no way to know if we're communicating to him what will happen or even know for sure if he wants it to happen. I can only say he seems to want it and that most likely he will no longer be here.
