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Joshua flaps his hands and rises on the balls of his feet, squealing with excitement. St. Mary's Catholic Church of Sleepy Eye, Minnesota, has begun its Sunday medley of sacred music. For the next four minutes, my son is in a carillon-induced state of ecstacy. Fourteen years ago, when we adopted Joshua, we quickly learned that he loved music of almost any genre, bright colors, and rhythmic movement. It took longer for us to learn that he had a garden variety of autism, a brain damaged by unknown traumas, and a perspective of the world that no one else would ever fully interpret.
Our family took many years to rebound from the ironies of this discovery. We were a family in love with words, who had a child diagnosed as unable to speak or understand language. We were older parents who loved to travel, who had a child who could not sit in an airplane or a car without screaming. We were people who wanted to experience as much as possible with all the people we loved, including this child who could be very unloving.
Since then, Josh has learned to understand and to speak, contrary to the first hateful diagnoses and thanks to the many selfless caretakers and a few competent professionals. We still work on his leaving home with us and enjoying what there is for him to experience in the world. Which, we always believed, is at least as much as what there is in the world for everyone to experience. But, how, we wondered, could we show him the world?
Blinded by the doctor's original warnings, we first needed other people to show us how far he could soar. When the five tough-and-tumble Tasto boys took him out of the house, I went anxiously to look for them. "Here we are," they answered my call. I looked up into the tree above me to see my four-year-old who had just learned to walk perched in the upper branches with his new friends.
As he grew older, but before he was toilet trained, his swimming teachers taught him to love the rush of air that hit his face as he plunged from the high-board. And his soulmate, Audra, taught him how to bike without training wheels. Then she allowed him to sit on the front half of the tandem.
For Josh to mature, his physical world has had to stretch to accompany this growth. His sisters were able to travel abroad with us as teenagers, enjoy restaurants and performances, and generally step in and out of overlapping spheres. Josh's adventures had to seduce him with the qualities that filled his needs and sometimes his obsessions. His love of carillon music led us to the Glockenspiel of New Ulm and the churches of Sleepy Eye and finally to the Hennepin County Courthouse in Minneapolis. Walking around what he calls the "Castle Clock," he noticed other buildings and their architectural details. He then created a self-guided walking tour around the city, naming the structures and his favorite peculiarities on them.
When walking downtown, he observed the planes flying low as they approached the airport, which then became its own favorite destination. We ricocheted between the airport fast-food chains as the "outings" became "eatings," but the announcements of departures and arrivals and the travel posters enlarged his map of the world.
Since these destinations were not practical options, we chose adventures closer to home. Minnesota is dotted with small airports, and almost everyone of them allows the local Rotary of Lion's Club to borrow it for a Fly-In Breakfast. In a generous exchange, area pilots bring their small aircraft to the community, eat a free breakfast, and show off their machines. For a five-dollar ticket, the civic-minded local bank president or feed salesman will flip all the pancakes and sausages you can eat onto your plate.
Joshua tolerated a display at the Redwood Falls Inventor's Congress and a few other side trips when we hissed "double sausages" at him as a bribe. He knew that when he got to the Fly-In, the smiling grandmas dresssed for church would chat with him as he went through the line. The relaxed parents who lifted their children to see the interiors of the helicopters would not glare at him when he spilled the syrup. And that he would get to eat our sausages, too.
Joshua looked for the ultra-lights and the experimentals, the private planes with bright colors and other oddities. One area pilot brought his Russian-made cargo plane, which looked like a tin garbage can knocked on its side and roared and spewed black smoke on take-off. At a breakfast where only four planes braved the rain to attend, Joshua stood up and cheered with the rest of us as each daring flyer became airborne. Sometimes, he seemed like a normal kid when he was watching aerial drills among these kindly people.
On other excursions, we both appeared odd. When he insisted on walking for two hours in a warm but steady rain so that he could hear two sets of chimes at his " Castle Clock," we looked like a homeless pair killing time until the shelter opened.
When people saw this wildly gesturing young man being pursued by a woman in a drenched rain jacket and clutching a wet McDonald's bag, they walked wide loops around us.
"Wait," I wanted to say. "This is a J. Crew jacket, and my outfit was not bought at a Junior League Thrift Shop. I go to the dentist twice a year and the beauty shop and massage therapist twice a month. One of my daughters went to Harvard and the other works at Saks. And this boy you look at as if he were a freak is a hell of a miracle kid."
I say nothing. We are two people on a quest to see the world, and we cannot be concerned with what others cannot see.
Vicki Pieser lives in New Ulm, Minnesota. She first wrote about her experiences mothering Joshua forMinnesota Parent several years ago. She hopes her essays will encourage parents to see their encounters with people with disabilites as opportunities to teach children empathy and appreciation for diversity.