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44 Chapter 4 Paul In January 1993, Teri underwent amniocentesis to check her four-month-old fetus for genetic defects. Her three-year-old daughter , Amanda, had been born with tuberous sclerosis (TSC), which causes the growth of benign tumors on the brain, heart, kidneys, and other organs. Up to 60 percent of those with this disorder suffer from intellectual disability; co-diagnoses of autism, ADHD, OCD, and mood disorders are common. Although Amanda seemed to be developing typically, she did suffer from seizures—as do up to 90 percent of individuals with TSC. She was also at risk for polycystic kidney disease and lymphangioleiomyomatosis, a degenerative lung disease, as she grew into adulthood. Given the uncertain prognosis of kids with TSC, Teri and her husband, Steve, had decided to terminate the pregnancy if their fetus had a major defect. Teri didn’t know that her practice had only recently begun offering amniocentesis, so her doctor was inexperienced with the procedure . But she vividly remembered how his hands shook as he slid the­ needle into her belly. And she won’t ever forget how the point struck her baby’s skull, how it drew a thin plume of blood. The doctor didn’t say anything, and Teri and Steve were too consumed with the possibility that their unborn child might have a major disability to worry about something that didn’t concern the OB/GYN. When the genetic tests came back negative, Teri and Steve finally allowed themselves to celebrate the impending arrival of their healthy son. But it wasn’t long after Paul’s birth before it became clear there was something wrong. He had trouble turning his head to nurse and was diagnosed with “failure to thrive.” It wasn’t until Paul was still unable to hold up his head at four months that Teri and Steve discovered exactly why: an MRI revealed that Paul had suffered an in utero stroke. As a result he had been born with only half a cerebellum, the part of the brain that controls balance and coordination, and contributes as well to language and attention. Although his doctors had Paul 45 never seen a case like Paul’s, they were optimistic. They speculated that his biggest problems would be with gross motor development. They told Teri and Steve, “He’ll never be an Olympic athlete.” Paul, who was sixteen when I met him at his home in January 2010, is not an Olympic athlete. He’s not even verbal. My first impression was of a profoundly impaired young man: his asymmetrical brain causes him to perpetually tilt his head to the right; he lurches when he walks; he grunts when he’s excited. It’s understandable, I suppose, why his teachers and school administrators assumed that Paul was incapable of learning or communicating. What’s not so understandable is why they refused to reconsider their first impressions when Teri repeatedly told them that Paul had a sign language vocabulary several hundred signs strong, that he just needed modified instructional materials, that he threw tantrums out of frustration with not being able to articulate his needs. Instead, Paul was placed in a typical kindergarten class at his public school with a teacher who refused to learn sign language. Because Paul couldn’t write yet, he had no way to communicate with her. By first grade, he was given a Dynavox 2C, a big, heavy, assisted-­ communication device. But, Teri told me, its vocabulary was “extremely limited—yes, no, I’m thirsty, I need to go to the bathroom.” Teri lobbied for a more functional device for her son, but was told he had neither the fine motor skills nor the cognitive abilities to use it. His outbursts—during which Paul would bite, hit, and scratch both his teachers and his classmates—were due, the teachers informed Teri, to her lack of discipline. It took another four years of pleading before the school district relented and provided a replacement device to Paul when he was eleven. The same night he brought the Vantage with an updated Picture Wordpower program home, Paul figured out the system of picture, word, and letter keys and started “talking” in complete sentences. It was amazing for me to converse with Paul and his Vantage. Unlike the controversial and now discredited technique of facilitated communication, in which severely low-functioning autistics are physically prompted by “facilitators” to tap out messages on a keyboard, Paul (who is not autistic) does all...

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