Barium Test

Just because you have the social story doesn’t mean you won’t encounter glitches.

Billy clears his throat after every meal. I don’t really mean, “clears” his throat. There is no proper word to depict the full body propelling tilt combined with the sound of a violent yet unsuccessful guttural purge overtime. This monumental throat vibration will at the very least inflame his entire esophagus tract. Although I am sorely tempted to ignore this daily reality show, a proper investigation can no longer be “put on hold”. The medical puzzle is why does Billy persist day after day in conducting such ungratifyting exercises? What purpose does it serve? Does this communication behavior infer an undetected source of pain? No one can answer that question without performing some tests. One of the tests we tried was a barium swallow. So armed with some facts and googled research, we piece together as best we can what will actually take place.
Prior to our visit, Billy reviewed the social story. The narrative written by me informed Billy that the test was like an x-ray except with liquid drinks. He knew that he would sit, drink this barium cocktail and then lie down on the table and wait for the x-ray. It was an “easy” test. What Billy didn’t know was that the radiology team expected and directed him to lie down on the machine and sip from a straw in a supine position. Billy growled. The medical team assumed immediately that Billy didn’t care for the taste or the texture of the drink. For some individuals on the autism spectrum, this conclusion might be accurate. But not in Billy’s case. No one likes an unexpected switch in the game plan and neither does Billy! What got him irked was the unrehearsed deviation from the social story. Or better known as the “deal”. So Billy vocalized adamantly his disapproval. No problem. But then they informed me that Billy needed to move from his back to his side. The visual and the text denoting the “side” of the body was in the carefully crafted social story, but it didn’t matter. Billy couldn’t in that instant decode the message. Pointing to the specifics in the social story or telling him to turn on his side did not translate! For Billy, I spoke a foreign language. Billy was going nowhere. So I did what I’ve done so many times – I “ad-libbed”. Determined to complete successfully this barium swallow exam, I looked at Billy and said, “do this”. With my radiation proof vest wrapped and tied around my torso, I laid down on my side on the cold tile floor and looked up at Billy on the x-ray table. Billy understood my interpretation and without further adieu, turned on his side. Yes, we completed the test. More importantly, Billy was spared the frustration and social humiliation that signifies a breakdown in communication.

The dilemma is that the doctor who authorizes the test is not the doctor who will conduct it. Doctors are dedicated and engaged in their patients care specific to their expertise. The current system, however, is not designed to value the time required for doctors to communicate to referred doctors about the patients communication issues and needs. Neither is there time slated to assess and communicate to the family all the steps involved. Billy and all his compatriots need to know the facts. Knowing what will take place, in what order and when it will be finished cinches the deal.

Another Way to Take a Break

For two years between the ages of 18 and 20, Billy no longer took what is referred to as a “break”. The totality and severity of his pain made the reality of taking any break moot. Gymnastics, swimming, skiing, ice skating, working out, taking walks on conservation trails, jumping on the trampoline nightly ceased to exist.

Billy’s life as he knew it was now an amorphous haze of former shadows. Bedridden and thrashing spiritually and physically from pain, the structure and routines of his day incinerated. It was replaced by a bevy of local and out of state meetings with doctors of diverse specialties, x-rays, MRI tests, hospital procedures and emergency room visits.

Yoga had been introduced to Billy two years prior to the onset of his medical morass. During that period, he learned that yoga was a space he could enter that was calm, and quiet. Methodic and mysterious yoga chants selected by Billy infused each practice with a meditative quality. In time, yoga became an experience in learning about the parameters of his body as well as how he could extend the physical possibilities through breath, trust in his teacher and his youthful body. As his body failed him, the yoga of sun salutations, warrior poses and downward dogs were no longer accessible. Restorative yoga became Billy’s serenity prayer. For two years. Restorative yoga was. Billy’s “schedule”. Supported by layers of blankets and covered with the secure weight of wraps and eye pads shielding his eyes from the world, Billy surrendered his mind and body. Instead of trembling lamentations, there was the glorious sounds of rhythmic breathing.

“Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

Rock and Roll Billy

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.