The Most Difficult Decision of My Life

By Amy Lennard Goehner

When my 47-year-old husband Fred lay dying in a hospital from a heart attack, I sobbed to my brother, "He can't die. Who will give Nate his shots?" Nate was our autistic son, then 5, and the injections were one of the myriad can't-miss cures we had tried in order to help him.

My husband died that night seven years ago, and I felt it was the end of the world for me, for our newly adopted 10-week-old son Joey and, most of all, for Nate, whose strongest connection was to Fred.

I learned to inject Nate. And when I decided a few months later that the shots weren't helping him, the decision to stop seeing that doctor (a doctor who had told Fred and me that Nate wasn't autistic and that he could cure him) was the most difficult one I had ever made without Fred.

The most difficult, that is, until I decided two years ago to send Nate to a residential school.

I enrolled Nate in the Boston Higashi School in Randolph, Mass., because I knew he was now capable of more (though I had no idea what "more" was). After years of day school followed by speech, occupational and behavior therapy, Nate had no master plan connecting everything. And I constantly worried that his ritualistic behaviors--like his insistence on sitting in the same seat in the last row of the city bus and crawling over anyone to get there--were never going to decrease.

During Nate's first week at Higashi, I got a call from his teacher asking me to send a pair of sneakers with laces. Why does he need laces when there's Velcro?, I wondered. "Because learning to tie shoes is a life skill," his teacher told me. It was an "aha!" moment for me--the first of many. Higashi is committed to preparing students for lifelong inclusion in the community, so it sends the kids home, with detailed vacation goals, for eight weeks of the year. That way, they can generalize the lessons they learn in school.

Higashi was founded by Dr. Kiyo Kitahara, a teacher who believed in searching out the "bud of self-identity" in every autistic child and fostering it with loving care. Her program, Daily Life Therapy, is more like Floortime than like ABA (see "A Tale of Two Schools") but takes its own unique approach. The first step is to get the child to develop a 24-hour rhythm through intense physical exercise. For example, a lot of autistic kids will eat only a few select foods, and many have difficulty sleeping through the night. At Higashi the kids jog twice a day on the theory that come mealtime, they'll be hungry enough to try new foods. And the endorphins released during exercise reduce anxiety--which is good because Higashi does not permit the use of psychotropic medications.

All that exercise also means the kids are exhausted at the end of the day and tend to sleep through the night. Nate was always fine after he fell asleep, but oh, those endless routines leading up to bedtime! For eight years, he insisted on sleeping in the same red T shirt with a yellow taxi on it, his large toy keyboard piano laid across his chest, his stuffed animal placed on a chair facing him and the radio playing a 24-hour news station.

Believing that many autistic kids can be reached by tapping into their creative abilities, the teachers have nourished Nate's love of sports and music. And he has never seemed happier. I can see his rigidity loosening every time he comes home or I visit him at school. Even Joey has noticed the changes. Nate has always confused the pronouns I and you. One day during Nate's most recent vacation, Joey said to me excitedly, "Did you hear that, Mom? Nate said, 'I want to play' instead of, 'You want to play.' He's becoming unautistic!"

Nate's teacher called me last week. She told me that on the basis of Nate's athletic ability and leadership skills, he had been chosen to represent Higashi at the Special Olympics this summer at Harvard.

I sent Nate to Higashi because I knew he was capable of more. I know exactly what my husband would have quipped: "I can't believe Nate's going to Harvard!"