Transition to Adulthood

Bud Mace was one of my professors at the University of Southern Maine. A colorful guy (to say the least), a behavior analytic wonk to the bone, Bud shared with me that he once took on the care of a young lady with autism. We’ll call her Molly.

Molly loved mall shopping. On this particular day, Bud allowed Molly to wander from him, gaining confidence in her community skills, and thoroughly enjoying retail voyeurism[1].

Until she didn’t.

There was a commotion near the food court. Folks gathered into a crowd, at the center of which was Molly:  Molly with her bra off, Molly swinging the garment over her head like a lasso, Molly by all accounts enjoying every minute of it.

“Oh my gosh,” I said to Bud. “What did you do?”

“Nothing,” he said.

“But I mean, what did people think? How did you get her back?”

“She’d settle down when it wasn’t fun anymore,” Bud said. “And frankly, I don’t care what other people think. People with autism live in our communities. People need to get used to it.”

I don’t know if the Mall Cops agreed with Bud’s laissez faire attitude, but what I took away from this was, well, people with autism live in our communities. And it’s ok.

It’s more than ok, it’s their right. People with disabilities are endowed with the same right to pursue happiness our founding fathers held dear in our Declaration of Independence. This was no doubt among many issues in the minds of advocates who pushed insistently for the closure of institutions housing the “feeble minded” and those of “mental defect,” in favor of integrated community living. — An inelegant process, to be sure, but heading in the right direction of equality and the sanctity of all human life.

That having been said, business leaders will tell you the journey from concept to copious is fraught with pot holes and wrong turns. Deinstitutionalization is no exception.

The very thought of a “group home” terrified us. I pictured them as fire-trap tenements in rundown neighborhoods staffed by big hairy guys in white uniforms carrying straightjackets in their back pockets, just panting for the opportunity to pounce on vulnerable “patients” who crossed their path with an inappropriate look or a refusal to eat their peas.

Surely in this day and age such was not possible. Or was it?  I had to find out.

Adapt, improvise, overcome. This fell under “overcome.”

I called Independence Association, one of several organizations in midcoast Maine serving individuals with intellectual disabilities. Without hesitation, Colleen Gilliam arranged to take me to five different homes, in different areas.

I remember Tour Day distinctly, even though that was now almost eight years ago. It was nearing Christmas. When we arrived at the first house, a Christmas party was in full force. The housemates and staff were exchanging small gifts, and everyone was laughing. There was a tree in the corner, with small white lights, and ornaments ranging from balls to toys to candy canes. I remember thinking the tree was especially pretty, and wondered where they got those lights. While we were in the kitchen, a young man came in to take the kettle off the burner, and made himself a cup of tea. He smiled shyly, and then asked Colleen and me if we would like some tea as well, or maybe some sugar cookies or a frosted cupcake.

“No thanks,” I said, patting my tummy. “Weight Watchers.”

He rolled his eyes. “Don’t want to get fat,” he said, and patted his tummy. I watched the man go back to the party.

How normal this feels, I thought.

Every housemate had their own room, each projecting a unique personality of the one who slept there with as much diversity as any college dorm or shared living home. The house itself was in Topsham, along the Androscoggin River, in a neighborhood typical of midcoast Maine.

“Come on,” Colleen said, and we went back to her car.

We looked at three other places, and each “felt” the same. They were clean, they were in decent neighborhoods, and a few were nicer than where I live. But mostly, I saw that the people who lived in these homes were happy. They were happy! Not a cowering, mistreated person, nor a hulking, hairy guy in sight.

The last place we looked at was closest to our home. It was a duplex, with a farmer’s porch stretching across the front of each unit. Colleen said in the summer there were porch swings here. The two sides were separated by a big garage, which struck me as odd, since I doubted the residents who needed 24/7 care could drive. (The staff could park there, of course; and should the building be sold someday for another use, the garage would undoubtedly be a feature.)

The building was leased to Independence. The owner’s son lived on one side of the duplex, and two other adults lived on the other side. The building was set back from the road, in the middle of three acres. Snow covered a yard that looked waiting for spring: a barbeque grill covered in plastic, and a snow-capped picnic table. The yard was surrounded by woods. It was beautiful.

Wow, I thought. I can see Josh living here. At that moment there was a small slice to my soul, one that bled with the realization that if Josh lived in such a place, in a “group home,” he was not normal.

Well for heavensakes, we already know that, another voice argued. Anyone would be lucky to live here.

Having kids with special needs is as much about ourselves as it is about our children. When we were young, we read books and saw movies and made up stories about people beating insurmountable odds. But the key word is “beating” it—whew, things were really bad there for a while but golly gee whiz, we got over that and look at us now!  Everything is back to normal.

What do you do when it, whatever it is, is forever?

Adapt, improvise, overcome. This is the new normal; and like any normal, it needs to be managed. And if you believe in God, as we most assuredly do, He has a plan and does not make mistakes. –Nor will He leave you on your own to flounder through it. He loves you more than you love your child. He loves your child more than you love your child. That doesn’t mean each of the million cuts with which a disability flays open your heart and soul won’t hurt—they will. But that is our ego and our expectations and our scripts that are not playing out consistent with the fantasies of our youth in this imperfect world.

When I left Colleen that day, I didn’t know if one or both boys would ever need to live in a group home.  They were, after all, still only 14. But if they did—well, now I knew it wasn’t the end of the world. It was a home. A way of life. Something safe, secure, clean and healthy.

Don’t we want that for all of our kids when they grow up?

Are you the kind of person that skips to the end of a book to see how it all comes out when you just can’t stand it anymore? Okay. I’ll tell you now.

Fast forward six years. There is no doubt, Joshua needs care 24/7. We are not getting any younger. We are exhausted, Josh is up most nights, he’s a foot taller than either Steve or me, he’s 230 pounds, his cluster headaches and seizures are overwhelming, and we need more help.

We work with Allie Vercoe, our case manager. We vet agencies that provide services to adults with intellectual disabilities, and somehow find ourselves back at Independence again. Colleen is still there.

The Independence Team spent some time with Josh, and also with us. They got a good sense of this young man, and our vision of Josh’s future as an adult.

“So where are you thinking Josh might be happiest?” Ray Nagle, the Executive Director asked his Team. They chatted about addresses that meant nothing to us, but in the end took us to look at three possibilities.

We thought, we discussed, we plotted strategy. Josh needed his space. He especially needed height. At 6’4”, the guy loves to jump on his exercise trampoline. That was no problem in our home, with its cathedral ceilings. But in these homes . . .

One was perfect. It was on a hill, with a daylight basement. The sunny bedroom down there had its own bathroom, and backed up to the storage and utility area. We could punch through that wall, build a little “man cave” there, and push up through the ceiling a good 8”, so Josh wouldn’t hit his head when he jumped. By having his suite downstairs, Josh could choose to be with his housemates, or not. Downstairs was his. It was perfect.

So, this perfect place: remember that duplex? Today, that’s where Josh has called home for two years.

Next time, we’ll talk about paying for it.

[1] Window shopping.