Liane Kupferberg Carter
“I don’t want to take a plane to college,” our 20-year-old son Mickey tells us.
“You won’t,” my husband Marc and I reassure him. “You can go to college and still live here at home.”
Mickey understands that college is the step that comes after high school, so “college” is the word we are all using for wherever he goes next. While many of our friends and their children are visiting campuses this spring, Marc and I are doing our own version of the college tour. We are visiting day habilitation programs for next year.
“There’s a Harvard for Mickey,” my neighbor Amy insists. She’s been saying this to me for years. “There’s a great program out there. You’ll find it.”
I’m not so sure.
Mickey isn’t ready yet for a more permanent, residential program. We’ve seen a “Harvard”; another neighbor’s daughter has been there the past 10 years. It’s a vibrant, integrated community two hours away in Connecticut that offers employment, recreation, and supervised living—a full life. That kind of program is our lodestar. Our hope.
But not yet. Right now Mickey isn’t even ready for a day program “without walls.” Programs without walls have no central location. They offer a daily roster of different activities, all out in the community. Mickey still needs a home base. What if he has a seizure, and needs to sleep it off? You can’t do that when home base is hanging out in the local library or mall.
I obtain a directory of day hab programs from the County Department of Community Mental Health and start calling. I want to screen them before we bring Mickey. “What do you want for your son?” one social worker asks. I am taken aback; isn’t it apparent why I am calling? I tell him about my son’s medical needs; his anxiety; his quirky sense of humor. I rattle off the obvious: community integration, vocational skill building, volunteer work, social opportunities with his peers. Then unexpectedly my eyes well up.
“I want him to be happy.”
Just as high school seniors know immediately—through some alchemy invisible to their parents—whether the school they’re visiting is a good fit or not, Marc and I find we have immediate, visceral responses too. At the first day hab program we walk into, no one asks us anything about our son. We are assaulted by noise. Older adults in wheelchairs are crammed around tables; one woman reads aloud from a newspaper though no one is listening. The administrator refers to people in the room as “consumers.” I don’t like that word. It’s antiseptic. Dehumanizing. I don’t like this place. I’m ready to bolt.
Instead, Marc and I walk politely through the facility and ask questions.
“What does a typical day look like here? What kind of training does your staff have?”
The response stops me cold: “They all have high school diplomas, or high school equivalency.”
Welcome to the world of adult services.
The second site we visit that afternoon is welcoming. Three administrators sit down with us in a conference room and invite us to tell them about our son. They take notes. They listen attentively, and ask good questions—what makes Mickey happy? What are the signs he’s about to have a meltdown? They describe their program. We talk at least half an hour. We’re impressed; I am feeling hopeful. Then they take us to tour the facility. We visit the “sensory enrichment room.” Most of the people look profoundly physically and developmentally disabled. We visit other rooms; again, I am struck by how much adaptive equipment I see. I have a hard time picturing Mickey in this environment; I see no one his age, so I ask.
“Our participants range from their 30s to 60s.”
Mickey is used to being with students his own age. How can it be appropriate for a 20-year-old to spend every day with people who are so much older?
That’s when it sinks in: School is truly over. “Adult services” aren’t only for young adults like Mickey. “Adult” means the entire lifespan.
We cross that program off the list.
“But we’re getting closer,” Marc says reassuringly. “At least we liked the staff.”
Two days later we visit another program. The director tells us that they have four or five “consumers” who start their morning in the building, then go into the community. They spend afternoons hanging out at Dunkin’ Donuts, or in the mall. I picture Mickey wandering aimlessly through endless food courts. Overwhelmed. Purposeless.
“But what about the other ones who aren’t out all day? Do they work on life skills?” Marc asks.
“We can’t do that here,” she tells us. “Much of our population is medically fragile. We’re just trying to keep them safe.” It sounds like babysitting.
Still, we take the tour. The facility consists of an open space as vast as a gymnasium. It contains bare tables, a couple of couches, and many idle “consumers.” One woman stares at the ceiling, then stares down at her lap. Ceiling. Lap. Ceiling. Lap. Ceiling. Lap. The room has the hopeless feel of a nursing home. Averting my gaze, I ask the administrator about the ages of the people we’re seeing.
“Twenties to 50s,” she tells us. But I see a white-haired woman who looks well into her 70s, and a wizened old man who grins at me. He has no teeth. I smile and nod back.
We peer into an alcove, and see a sink and microwave. I think how much Mickey likes to bake. “Do you do any cooking with your “consumers?’”
“We can’t,” she says. “Too many legal liabilities.”
Marc and I can’t find the exit fast enough.
“I’d sooner keep him home,” I say fiercely.
“We will figure this out,” Marc says. Trying to convince us both.
“It’s grim out there,” I tell my neighbor Amy. I know there’s not going to be a “perfect” program, just as there is no perfect college, no perfect job, no perfect anything. But what about acceptable?
We visit more places. Finally, we walk into a program and see several young men and women Mickey’s age. They look energetic. Engaged. The facility isn’t beautiful, but it is bright and cheerful.
“What’s a typical day here?” Marc asks.
We hear the right words: functional academics, community integration, supported employment. They partner with a program that offers life skill classes at local colleges for adults with developmental disabilities. Most of the people in the program are in their 20s. When we tour the building, we’re pleased to see a computer lab, a fitness room, and a fully equipped kitchen for program participants to practice cooking skills. “We’d be happy to have him come spend a day and try us out,” the coordinator suggests.
“What do you think?” I ask Marc when we are back in the car. But I already know. “I can picture him here.”
The following week we visit one more day hab. The young adults there look comfortable. Engaged with each other. The staff seems warm and caring. We talk with them for more than an hour. “We’d love to meet Mickey,” the coordinator offers.
“I can picture him here too,” Marc says.
Relief. We’ve located two acceptable programs. If both programs don’t lose their funding, and if they have openings in the fall … we actually have a choice. No. Mickey has a choice. Because when all is said and done, this isn’t about us.
“Is it ‘Harvard?’”Amy asks.
I think wistfully of that residential program in Connecticut we like so much.
“No,” I say. “More like junior college.”
But maybe—just maybe—it will be the best step toward developing the skills and social maturity Mickey will need to thrive someday at that college in Connecticut.
This article originally appeared in autismafter16.com. Autism After 16 is a website dedicated to providing information and analysis of adult autism issues.