Companion–“a peaceful spirit with a big heart”

Bernie died today – Thursday July 22, 2010

He was Billy and Ben’s dog for fourteen years.

But Bernie was also a friend, a companion, a social compatriot in our tightly knit family.



We received Bernie from the NEADS (New England Assistance Dog Services) program in Princeton, MA. This worthy non-profit organization’s mission is to train dogs found in shelters to guide, support, protect and comfort individuals with an array of developmental and physical challenges.

Bernie was what NEADS referred to as a “social dog” whose tail always wagged. Bernie was a mix with no particular pedigree, he nevertheless stood out with distinction. Passersby’s would pause and marvel at his muscular 95 pound regal bearing with a luminous auburn coat. As a young boy, Ben proudly took Bernie on walks and as a young man they would take runs through the neighborhood and wooded trails. After their runs together, Bernie would bound up the backyard and carry back to Ben, no not sticks, but major tree branches as a way to entice Ben to play , tussle, and just hang out together. In those daily hours when Ben and Billy’s needs diverged, Ben sought out Bernie and together they curled up for hours on the floor, nustling and content. Ben and Bernie’s energy was boundless and so was their love.



The first time I brought Bernie home, a little Billy spied us thorough the glass kitchen door, turned around, ran to his bedroom and jumped in his bed and pulled the sheets over his head. This was an ominous beginning but Bernie never shied away from Billy’s less than enthusiastic welcome. Respectfully, Bernie stayed by Billy’s side no matter what happened. Bernie waited, stayed close and never distanced himself from our family’s unfolding story. Bernie’s unabated attention was a primal wellspring of support. Billy’s gleeful Irish jigs, jumps and squeals of delight were greeted by Bernie with equal vigor and carefree abandon and when a 17 year old Billy became sick, Bernie never retreated. Billy’s anguished screams and body contortions as he tried so hard to control his pain-ridden body were witnessed by a quiet and solemn Bernie.



Through New England snows, ice, hail, drenching rain, slick mud and thick heat, Bernie always accompanied Billy to the barn every afternoon and every night. Whether Billy listened to music, jumped on the trampoline, sat on the rocking chair or laid down on the trampoline folded in blankets, Bernie sat in front of the barn and waited. After each barn session without fail, Bernie escorted Billy back to the house.

Billy was never alone.

My visualization of Billy and Bernie running up the hilly yard to the barn is and will remain a deep fountain of gratitude, reassurance, and renewal.

Billy is not alone.



photos: ©2010 Millicent Harvey Photography

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.