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Inside Out

By the time my son arrived at Murdoch Developmental Center, he had been hospitalized at John Umstead Hospital for five months and at the University of North Carolina’s Memorial Hospital for seven and half months. He’d had a seizure disorder since birth, as well as a developmental disability. But now he had developed a terrifying psychosis. He didn’t know me. He didn’t know himself. He thought he could shoot lasers from his eyes.

The doctors couldn’t say what had gone wrong, but after they tried their arsenal of antipsychotics and it had failed, they told me he would need one-to-one care twenty-four hours a day for the rest of his life. And that meant he was going to need an institution.

The very word made me shudder. I remembered Willowbrook, where in the early 1970s Geraldo Rivera’s television crew had illuminated wards crammed with naked people and floors slick with human excrement. Like everyone else, I had watched the images of inmates trapped inside. I’d seen their vacant eyes, their skin-and-bones bodies, and their filthy feet.

So I resisted. But when I saw my son at Umstead, a towel spread over his shirt to catch his drool and his chin dropping onto his chest, I knew I had no choice. I reminded myself that he had already been in institutions for more than a year. He had already lived by their particularities: the evening lights-out and the morning wake-up times, the meal trays rolled in on stainless steel carts. The showers where everyone could watch him while he bathed. He had already suffered the diminishments that come with being held in place.

The day he moved to the Behavioral Advanced Residential Treatment (BART) unit at Murdoch, he could barely hold his head up. I watched the staff carry his belongings in from the van. His plastic box containing his Star Wars action figures. His two T-shirts. A grocery bag with his three pairs of rolled-up white crew socks. When I went inside, I found him nodding off in a chair in a day room.

But the BART staff welcomed him warmly. They spoke to him directly, made eye contact, called him by his name. As the weeks passed, they reduced his meds and then helped him take walks, take showers, take his place at the table in the dining room. Take up the chores and habits and practices that would allow him to gain whatever purchase on this world he was ever going to have.

He shared a room, but he had his own comforter and sheets, his own towels, his own stereo, his old stuffed bear. He had privacy when he needed it and company when he wished. He could not communicate much at first, but he would high-five the members of the staff who worked with him. That slap was his way of saying that he was okay.

The staff eased him along. They cradled him like an egg in a cup. But he had to live his days with purpose and he had to keep up with the program. Every time he reached a goal, a new goal would appear, each like the rung of a ladder on a slow and steady upward climb. He rose through the token reward levels and then graduated from the token system. He started out with an aide by his side but over a long span of time gained campus independence. Once as unknowing as a blank sheet, he came to know me and to know himself. He stopped scanning the horizons for unseen enemies. He began to talk about things other than time traveling, terrorist bombs, dismemberment. He took an interest in those around him. He asked the staff on Monday mornings if they’d had a nice weekend. He worried about a fellow resident who looked to be getting sicker. He began to make phone calls home. Just to talk, he said.

Was everything perfect? Of course not. But the task before my son was not about finding perfection. It was about returning to life.

Unbelievably, ten years passed. Then, miraculously, he was signed up for a GED course at Vance-Granville Community College. Before he left for class the first day, the BART staff bought him a backpack and fussed over his clothes and talked with him when he asked solemn questions about whether he might be able to date. He no longer had any signs of psychosis and now looked like any other young man with an intellectual disability, which is to say, he looked like any other young man making plans for his future.

I watched his progress with slowly evolving wonder and joy and heartbreaking relief. Truth be told, when I had no experience with any of this, I had always believed that a really good parent would never institutionalize her child. A really good parent would sacrifice everything to keep her child at home. When my son went to Murdoch, all I knew was that I should have done a better job. But as my son got better, my guilt slipped away. The undeniable fact was that an institution was the best place in the world for him. The institution provided a thousand things he needed, things I didn’t even know existed. I stopped beating myself up. I realized that I was glad he was there.

Then I thought of the day that he arrived, when the BART social worker could see how distraught I was. She took me to one side and put one hand on my arm. “Give us a year,” she said. “You will not believe the difference.”

I had been far from sure, but I had already done what I thought was the unthinkable, so I decided to do as she asked. I let go. I let the BART staff take charge. I let them guide me and I let them have him. And amazingly, against all odds, unaccountably, and against every expectation and every fear I had and all the guilt I felt about what I thought were my own failures, it had worked.

We kept moving on. By the time he was twenty-six, my son’s life had begun to blur the line between inside and out. He went to a Nine Inch Nails concert and looked forward to the Alice in Chains show. At Vance-Granville Community College, he worked alongside the other GED students and no one knew that he rode the van home to Murdoch Center. When he came to visit me in Chapel Hill, he liked to hang out at coffee shops with a laptop, just like the other people his age. By the way, he did not care to do that with his mom.

Now he would like to come back to the world full-time. The BART team and I agree. But we’re moving slowly. None of us wants him to step out unprotected. It’s hard to leave a world that is safe for one that is not. But we are determined.

Not long ago I asked him if he had hated being sent to BART. I thought he might be bitter. But he shook his head and told me without the slightest trace of rancor that even though he had a long way to go when he started, he’d done a good job with his program and he had made it. He didn’t mention all the things I feared, that he might have felt abandoned or lost or unloved. Then I asked him how he felt about the possibility of leaving. “I’ve got this, Mom,” he said. And then he grinned like I was crazy even to ask.

I used to lie awake at night wondering if he was lonely in his room at BART or if he had friends. Now I lie awake at night wondering if he really will be able to manage without BART. Will he be safe? Will he be happy? Will he be loved? Astonishingly, I am even more terrified about him leaving the institution than I was about him going in. And I am even more terrified about leaving the institution myself.

But I know we won’t face the move to the outside world alone. Murdoch will see us through. The BART staff will set a final goal, and my son will turn toward it like a distance runner at the finish line, and the BART staff will make sure that I cross that line with him. Just like always, they will lead us, encourage us, cheer us. They will hold our hands and they will keep holding our hands, not too tight and not too loose, until the very last moment, when, very gently, they will let us go.