March, 2010
Monday morning, Billy and I review the social story about a new doctor visit. Holly takes a picture of a fairly innocuous suburban brick building as a way to visually emphasize the fact that this trip is primarily a conference and not a bona fide medical visit. At the end of our meeting, the social story concludes that the new doctor will examine Billy’s eyes, ears and throat. This description of doctor protocol is our standard definition for a noninvasive visit. Billy learns that the doctor’s interaction with him is specific and time sensitive. The social story summarizes the medical event as an “easy visit”. Historically, this “easy visit” pitch does not always assuage Billy’s fears. Billy’s ongoing pain and discomfort generates a lower tolerance for schedule disruptions and, new information or activities. Acute pain often dissolves any element of trust in the social story display. Billy’s survival instincts to fight or flight are formidable. I brace myself for a rip-roaring showdown in the kitchen, in the car and yes maybe at the doctor’s office.
But I am wrong. I am wrong about Billy. Not once did it occur to me, that Billy’s response to a difficult request might change. That Monday morning, armed with the social story, I prepared for the same response not for greater insight or transformation on Billy’s part. On the level of intent the social story is a teaching unit for declaration not education. But Billy is a communicator and communication is fluid and evolving; never static, adults learn, change and grow. Why should Billy’s life be different? Years of physical duress, and emotional trauma compounded by an array of medical procedures has a profound impact on Billy’s sense of self. Pain and all it’s accompanying emotions is a deeply personal and visual experience that he knows, identifies and expresses through his language device system Billy understands why he needs medical help. Billy trusts the message and the person who delivers it. Emotional and social confusion happens daily and in sync, emotional and social maturation unfold. My observations and my data collection are not all encompassing. I am not a mind reader. Perhaps I too suffer from “mind blindness”.
So that Monday afternoon, Matt, Holly, Billy and I go to the suburban medical office building. We file into the doctors office. Four chairs are positioned in front of the doctor’s imposing desk, we take our seats. The laptop stationed in front of him, the doctor begins his inquiry. Our social discourse is awkward. His eyes dart up to pose the question. But as soon as Matt or I answer, he focuses entirely on the screen. This question and answer disconnect period drones on for almost an hour. In an almost Zen like practice, Billy sits erect with his palms resting lightly on his thighs. He dons the black Ray Bans and there appears to be a slight smile on his lips. Billy is serene and we are at new medical facility with a doctor he has never met. And then the doctor stops inserting the information. He swivels his chair toward Billy, glances at him and directs his question to us. “Is he light sensitive or a rock and roll star?” I answer proudly, “I think the latter.”
Rock on Billy.
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