Excerpt: Looking Toward the Future

Autism Mom's Survival Guide cover

…Jane, a kindred spirit in Milwaukee, is way ahead of me. Her son, Chris, is thirty-three. “My son has been working at Barnes and Noble and living in an adult family home in the community for eleven years,” she wrote me. “I still suffer from separation anxiety and miss him every day (even though I do see him every weekend). I can tell you that I still do not know if this is the course he would have chosen for himself. He does not verbally indicate whether he is happy or not (he has limited speech). We judge his well-being via his behavior.” This has always been our modus operandi with Nat, who so often cannot or does not express what is going on inside.

Jane impressed me with her positive attitude and her ability to meet difficulties head-on, despite the challenges of being a single mother. “I was divorced when Chris was six or seven years old,” she told me. “I really felt alone. I just wanted to take care of my son and daughter. We all moved to Akron, Ohio, because I had a stepsister there. It was great because we had family; we had supports.”

The support of her stepsister enabled Jane to go back to school and earn a degree that would help her get a good job. After she finished her education, the three of them moved back to Milwaukee and lived with Jane’s parents while Jane looked for a job. Jane feels she was so lucky to have been able to do that, as opposed to feeling discouraged about moving in with her parents. “Those were the happiest days of Chris’s life,” Jane said. Even now, twenty-six years later, he points in the direction of her parents’ old house when they pass their old neighborhood. It is Jane’s dream to buy her parents’ former home so that Chris can live in it again.

Jane’s strong sense of what is important and her ability to stick with that has convinced her that advocacy is the key to an autism family’s happiness: advocacy for the child and for the parent. “I want more for him,” she said simply. “I want to build a better world for him while he’s alive.” Doing that is a tall order, but Jane has learned that facing the obstacles that come up gives her such a feeling of accomplishment. “You have to stay on top of all the tasks related to supporting Chris as an adult in the world. It never ends. But it’s the challenge of it all that interests me,” she said. “If you’re negative, all the work you’ve accomplished will cave in. It is just that simple. Chris can sense my attitude. It affects him in so many ways.” And being negative will affect you, the parent, as well.

Jane also discovered the value of finding trustworthy people who understand her child. One such person helped Jane’s son Chris to get the job he has had for eleven years at Barnes & Noble. “Chris had a job at a public library,” says Jane. “There was a woman there who knew how to connect with him. When this woman left the library to work at Barnes and Nobel herself, she took Chris with her.” Since then, she has acted as a job coach and sometimes serves as a liaison between Chris and the customers. But it is Chris’s ability to internalize the layout of the bookstore that has made him the cherished employee he is today. “He knows just about where every book is in the store,” says Jane. “He helps customers. He walks them to where their book is.”