My brother, Peter, has a developmental disability which has never been diagnosed despite extensive evaluation in the 1970s, and more testing a few years ago. We have never had a tidy label to describe him.
I have always loved the fact that, by virtue of not easily fitting into any clinical category, Peter seems to defy science as swiftly as many of the sci-fi heroes he loves. His special needs have presented challenges along the way. Growing up, Peter was often ostracized and teased by other children. Our parents fought their own battles to obtain the educational support he required – a plight intensified by the fact that without a diagnosis, Peter has never automatically qualified for services that address his unique needs.
When Peter finished school, the struggle shifted to finding a structured environment: ideally a job which enabled him to increase his independence, productivity and involvement in the community. Today, as all of us age and contemplate the future, important questions loom regarding where Peter will live and how he will get the daily support provided by our parents after they are gone.
I once asked Peter what he considered to be the biggest tragedy of his life. I was in college, studying Italian Renaissance literature, swept away by the rich language and dramatic tales of the human struggle.
Peter, ever the realist, replied without hesitation,”The tooth.”
“What?” I asked. “What tooth?”
“Emily!” he said, incredulous and wide-eyed. “Don’t you remember? I broke my front tooth six times. Where have you been?”
Slowly, fragments of memory came together. Yes, Peter had spent an awful lot of time in the dentist’s office as we were growing up. I studied his mouth and before long I could almost see the word “FRAGILE” stamped across it in big, red letters. How could I have forgotten The Tooth Tragedy?
Tooth Incident #1 occurred in 1979, when Peter was eight years old. He was playing basketball with a neighbor when both boys jumped up to grab a rebound. Instead, Peter got a sharp elbow to the mouth. One tooth, the front left, had broken. Our parents immediately took Peter to see Dr. Salusti, our family dentist, who essentially pasted the tooth back together. My brother, an active child who loved sports, stopped playing basketball for a couple of days thereafter, but only because Mom made him.
The second Tooth Incident occurred when Peter was 14. For years we had spent summer weekends camping on New Hampshire’s largest and, to my mind, most beautiful lake, Winnipesaukee. That summer Dad decided that, with our last name (which means “seaman” in Italian), owning a boat was a matter of destiny.
Peter, like me, was always happiest on or in the water. In the back of the speeding motorboat we sat side by side, our excited shouts barely audible above the engine, our giggles carried away by the same wind that pulled us down into our seats. Mom had an ancient pair of heavy binoculars. Using them was similar, I imagine, to reading an encyclopedia while lying flat on your back on the beach: your arms simply could not take it for very long.
One day, we trolled the boat leisurely, taking turns scanning the lake through Mom’s binoculars. Unfortunately, Peter was enjoying a view of our beloved Rattlesnake Island when Dad decided to refresh our scenery by turning the boat.
When Dad pushed the throttle, the boat’s nose surged into the air as her motor dug into the water. As we lurched forward, Peter lost his balance and fell back into his seat. On his way down, the heavy metal barrels of Mom’s binoculars smacked into his mouth. The weekend getaway ended with an emergency trip to Dr. Salusti’s office.
Two weeks later, Peter bit heartily into a pork chop, constituting Tooth Incident #3.
That November, the fourth Tooth Incident occurred at school. In the end, we didn’t know if Peter had been unintentionally hit by a classmate who was fighting with another student, or if the kid had purposely popped him one. We did, however, know how to proceed. Thanks to my brother, Dr. Salusti was having a lucrative year.
When Peter showed up in Salusti’s office a few weeks later after biting into a donut (yes, a donut) and rupturing the ill-fated tooth for the fifth time, our collective good humor was running low.
They say the good thing about enduring bad times is that usually they can only get better. Lord knows that Peter and his tooth were ready for better days. Luckily, many followed, thanks largely to Special Olympics. Peter loved playing sports with teammates who became his best friends. Years of joyful, virtually injury-free athletic achievement passed.
And then the softball season of 1994 arrived, along with the Final Act of the Tooth Tragedy.
Peter stands 6’3″ tall and weighs more than 200 lbs. Despite his intimidating mass, one look into his big hazel eyes renders his unmistakably gentle nature. He loved to play centerfield. However, the fear factor periodically overruled his skill, especially when objects were headed his way with considerable velocity. You see, when it comes to personal safety, my physically imposing brother is basically a wimp.
One day a ball was hit hard in Peter’s direction. I had seen him attempt to catch fly balls before, following the airborne ball with dancing eyes and legs as he stuck out his glove. As the ball approached, he would simply squeeze shut his eyes and clamp together the folds of the glove, praying that the white leather orb was inside. Often, he was lucky.
On this day, my brother’s prayers went unheard. Later, Peter said that the sun had blinded him. I pictured his upturned face, closed eyes and open mouth welcoming the warm sunshine and fresh air, but making a poor substitute for his outstretched glove. Peter’s seven innings were cut short for a trip to Salusti’s.
By then Dr. Salusti’s son, who we affectionately still call “Junior,” had joined the practice. When he read Peter’s file, the young dentist decided that enough was enough and ordered my brother to avoid all activities that might injure the tooth (a broad category, given Peter’s dental history) until he could put a permanent cap over it. Peter eagerly obliged, forsaking centerfield, pork chops and even donuts. The day he came home with his capped tooth, my brother smiled as if he had been granted lifelong immunity from every disease on the planet.
Today, Peter and I laugh about The Tooth Tragedy, and we talk about other challenges that we may confront in the future. We know that the answer will not always be as simple as a visit to the dentist. We understand that there aren’t permanent caps for everything that may break in our lives.
But we recognize that we have been blessed with optimism and a sense of humor, and we know that we have each other. While we cannot predict the comedy and tragedy that will come our way, there is a certain comfort in knowing that we will experience all of it together.
Emily Marino holds a M.F.A. in Nonfiction Writing from Columbia University. She is a member of the National Sibling Leadership Network, devoted to providing the siblings of individuals with developmental disabilities information and support to advocate for their brothers and sisters. Currently, Emily is writing a book about the special bond between individuals with developmental disabilities and their siblings.
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.