Impact Feature Issue on Stories of Advocacy, Stories of Change from People with Disabilities, Their Families, and Allies (1988-2013)

The 2006 Impact issue on parenting teens and young adults with disabilities noted, “For the generation of young people with disabilities reaching adulthood today there are ever-expanding opportunities to pursue adult lives that reflect their goals, dreams, ambitions, values, and life visions. And there are still barriers to that achievement…” The following article by Susan Yuan from that issue talks about her family’s experiences with some of those barriers and opportunities.

Andreas lives for other people. He smiled at three weeks old, and hasn’t stopped since. Without spoken language, he reigns king of communication. In that world of connection, in school or in the years since, the key has been his support person/companion – the person who keeps the balance, who opens up opportunities yet helps Andreas keep his exuberance within bounds.

Andreas moved into high school surrounded by friends. His social studies teacher had a sister with disabilities, and took it as his challenge to make the entire class advocates for Andreas – and succeeded. Andreas was in regular classes, in a local school, in a small town, in a small state, where everyone knew him. In that microcosm, Andreas knew how to fit, and how to move. Then his class graduated. Andreas stayed on, and on, and on, with fewer and fewer friends. In his last year, recognizing his shrinking world, his school hired a beautiful young woman as his paraeducator. She naturally drew other students in the school to her, and at the center of that magnetic field sat Andreas. He graduated to a standing ovation, and partied all night with his classmates.

We had everything in place – a Medicaid Waiver for activities in the community and a decent salary for a person to carry them out; funding for a life outside our home, plus four part-time jobs, one for pay. We had done a good job planning for transition, and still it fell apart.

In a community-based, individualized model of supports, everything rises or falls with that key support person, and we couldn’t find one. We joke now about those first couple of years. There was Elmer from Maine, who had a 10-year gap in his resume, and wondered, in passing, if there would be any problem with Andreas’ playing with the fishhooks in his truck. A politician’s son announced that they had had a marvelous day – Andreas had hugged every person in downtown Burlington! A very disturbed young woman reported that Andreas was suicidal; he had been trying all day to hang himself with his seatbelt.

One by one, Andreas lost all his jobs. He had a job walking dogs for a local pet daycare business until his supporter of the day walked into the room full of people delivering their dogs and announced that she would never leave her dog in a dump like that! A couple of jobs he lost because those boundaries of exuberance weren’t maintained, and he overwhelmed co-workers with bear hugs. The paying job he lost because it was just too much trouble to get him there. There was no point in trying to develop new jobs when there was no way to guarantee he would show up.

To be fair, Andreas tended to give new support people a run for their money, especially at first. One time, his service coordinator, a savvy, experienced woman, volunteered to fill in. An hour after he was supposed to be home, I got a call from a town 40 miles away. Andreas had been sitting in a booth at McDonald’s for four hours, and wouldn’t budge. When I arrived and walked in the door, he popped right up and out. The woman sputtered, “You little s---!”

Stability came within reach as a young mother looked for a way to work and still be with her children. Andreas loved her and her babies, and she would load him and her children in her van and cruise all over northern Vermont. He watched Barney videos, but at least he was occupied, happy, and, we thought, safe. After three years, we learned that his social circle had grown to include crack addicts, pill poppers, and methamphetamine “tweakers.” How ironic that I worked in the field of disability, yet Andreas wasn’t safe, even when he returned home every night. I felt guilty that I loved my job, and didn’t want to give it up to become his permanent companion. The time he spent with us on weekends was boring for him, but at least I knew where he was and what he was doing, even if he was doing nothing.

Despair had almost taken over when Jason entered our lives. A year older than Andreas, he’d felt empty and Andreas has filled his life. Half the time, Andreas lives with Jason and his five dogs. They swim and kayak in the summer, but more than anything, they party at nightclubs and concerts. Jason says Andreas is a babe-magnet who sorts out only the right women.

We didn’t do anything to find Jason, he found us. No matter how hard we try to control life, we can’t. We didn’t when Andreas was born, and we don’t now. But that doesn’t mean that life isn’t good. It may not last, but we’ve learned how to appreciate it while it does!