Acceptable risks in pursuit of the life I want for my son

John and I typically visit our older son, Andrew, on Sundays. We pick him up at the group home where he lives—about 20 miles from our home—and take him out for coffee. Sometimes we go on a walk, or shop together. Lately, John and Andrew have spent the time working math problems to prepare for the ACT.

Andrew has autism. He’s 24 and he’s an unusual guy. He can work square roots and parse five-digit prime numbers in his head. He speaks in lovely, fleeting haikus. Once, while in St. Louis, he lectured us haltingly for an hour on the philosophies behind Manifest Destiny. But judgment-wise, he operates at about the level of a 13-year-old. Or, more accurately, an alien who just landed and doesn’t understand our culture. He is easily taken by unscrupulous sales people (Best Buy routinely sells him $20 “warranties” on $25 items). He is wont to walk away from people while they’re talking. He’ll eat dessert until it’s gone.

Once, when trying to determine whom Andrew was referring to I asked, “Is she white or black?” and Andrew said, “Let me think.” Then he did—he thought hard for a moment—before saying: “I don’t recall.”

Last Sunday, when we called Andrew on the cell phone we replace every few months (because he drops it into a pond or the bathtub), he told us he wasn’t available. He was at a baseball game on the outskirts of town. No, he wasn’t playing. There had been some sort of mix-up. But he couldn’t get back to the group home. There was just something ‘off’ about the conversation—though I’ll admit, this is a tough call to make with Andrew. We got directions from his group home and drove out to the field and found our six-foot-three-inch son dressed like Jose Canseco and squinting into the afternoon sun.

He was in the bleachers, but the part that wasn’t covered. The temperature was maybe 90. When I looked at my son’s face, even under his beard, the skin looked angry: red, scaly and peeling. I asked him if he was wearing sunscreen. He said that he was not.

Then Andrew told me it was too late for sunscreen anyway, there was no point. He pulled aside his baseball jersey and exposed a shoulder covered with huge, raised blisters. I stood and examined his neck, which was the color of a lobster when it’s boiled and just ready for eating. I asked him if it hurt. He considered this question for a minute then said, “Yes.”

John, who grew up barefoot as Tom Sawyer in the south, shrugged and said maybe we should tell someone. I was livid. All the statistics I’d ever seen about skin cancer ran through my head. I worried about infection. I touched Andrew’s hot arm, gently, and asked if he would come with us.

In the car, Andrew (in his way) explained. The four guys in the group home had taken a trip to Des Moines—this much we knew. They’d gone with two staff members, to the zoo, to an arcade and to a water park.

“Did you wear a shirt at the water park?” John asked.

Andrew gazed out the window. “Probably not.”

“Did anyone give you sunscreen?” I prodded.

“I’m not sure,” Andrew said.

Later, as we approached the group home, Andrew remembered something else. “We went to a casino,” he said. “Sheku gave me money for the slot machines. I played for a while.”

It was, after many miles, this piece of information that made me pause. My son had been on a vacation with his friends. He’d gotten out of town, out of his routine. A staff member who has worked with him for a year, who has visited our home and had dinner with us, who seems to adore my strange and wonderful son, had handed over cash—probably his own—so Andrew could play a slot machine. Was I thrilled by the thought of my naive son in a casino?

Strangely, yes.

For years, I’ve been fighting with the people who want to limit Andrew. I detest the rules and routines—the stultifying small-mindedness of the social service system when it is delivered by rote. Andrew’s original social worker was a woman so unimaginative and downright lazy, all she did was impose barriers. She missed more appointments than she kept and when she was around, her major role seemed to further restrict my son’s choices. This made me homicidal. Still does.

During one meeting, for instance, she mentioned casually that any sexual relationship my son were to develop—EVER—would by definition be rape. Here was her logic: Because Andrew has autism, the only sort of woman who would consent to be touched by him would also be disabled. Perhaps someone with mental illness or Down syndrome. And since a female with a diagnosis cannot give legal consent, Andrew would be committing a crime. I swear, she made this pronouncement with a smug little smile. And I’m utterly serious when I say, if I am ever presented with the opportunity I will run over this dumb ox of a woman with my car.

Lucky for us, Andrew has much finer, better, broad-thinking people in his life now. There is his guardian, Clarence, a simply magnificent soul who is helping us prepare Andrew for college. There is a state social worker who, at least, does no harm. A psychologist who has taught my son social niceties that he uses diligently, the way other people speak a foreign language. And this group home, with all its baseball games and vacations and human mess.

Prior to moving here, Andrew lived in a place selected by the social worker I so ardently wish dead. It was a prettier house but it ran like a prison. The guys sat in front of the TV all day long and ate junk food while the staff smoked cigarettes—year-round—out on the front step. My son gained 50 pounds and developed a host of bizarre and anti-social habits in that home. Believe me, there were no vacations…

Which brings me back to Sunday. Angry as I was, I held myself in check when we went in to talk to the staff. The director’s face went white when he saw Andrew’s blisters; I’m sure he was envisioning a neglect investigation, possibly a lawsuit. He whisked my son off to urgent care where they prescribed an antibiotic ointment. He called an all-staff meeting to address this unspeakable error. He took the situation quite seriously, as he should.

Abuses in group homes are legion. There was a 2011 series in the New York Times that exposed rampant neglect in the NY system—as well as financial improprieties that allowed sleazy, independent operators to get rich. Here in Minnesota, there was a case of outright evil at a cluster of group homes in Duluth. Several clients died and staff were caught screaming and bullying the disabled on tape.

But in Andrew’s case, I remind myself, there is no malice. There is, in fact, only a group home operator who believes that his clients deserve a vacation from their lives. He is willing to shoulder the risk of shepherding random autistic men through unfamiliar situations. Zoos and casinos. Baseball games. Chess tournaments, in the case of my son. There will be no lawsuit, no further trouble from me.

I’m not happy that my son was burned and I hope his staff will be more careful in the future. But my concern is far outweighed by my relief that he’s living among people who respect him enough to take chances. I’d rather Andrew be free to live than completely safe—locked up in a room with the drone of Judge Judy in the background. But with freedom comes risk. Real life is a gamble: travel and problems, uncertainty and sadness and love.

Real life is exactly what I want for my son.