By Kristen M. Scott
In his memoir “Running with Walker,” Robert Hughes describes coming to terms with his son’s autism, adapting to the challenges, grief and joy inherent with the disorder.
I read the book almost a decade ago, when my own son with autism was 10 years old, and the last line has echoed in my thoughts many times over the years.
“On this day… the way life is and the way life should be are really the same thing.”
I wanted to agree with him. I’d come a long way from the dark, early days, rife with loss and fear, following Daniel’s diagnosis. Denial no longer crippled me. I acknowledged the lifelong nature of autism, and was doing my best to help my son live fully.
Still, I often cursed the injustice of it all: the enormity of what Daniel was missing, the dreams never to be realized, the lesser, simpler experiences which comprised his world. Hughes’s words were alien to me even as I longed for the peace and acceptance they seemed to promise.
For life was anything but tranquil most of the time, a daily struggle with a baffling, quirky set of behaviors which turned life as we knew it upside down. Any outing had ordeal potential. Unpredictability seemed the only constant. The harmonious, comforting rituals I had envisioned for my children—going for ice cream, shopping for school supplies, visiting Santa at the mall—were often chaotic, truncated substitutes for the real thing.
It was exhausting to hold on so tightly, determined if it killed me to provide the picture postcard life bursting with happy memories that I’d imagined for my children. Bewildered and drained by the demands of parenting this special boy, I longed for normalcy, for tradition, for the kind of childhood I remembered, through the forgiving lens of time, as perfect. I was not ready to let go of dreams I didn’t even know I’d had, to accept the unacceptable, to agree with well-meaning friends who told me that in God’s world there are no mistakes.
Oh yeah? I sneered to myself. You come and do it, then. Live in my world and tell me you see the design, the rightness of the way things are. My denial may have broken, but my bitterness at the hand dealt my beautiful son, and my daughter who loved him so dearly, was most certainly intact.
I understand now that in those days I sought the order of tradition, of the way things should have been, to manage a world spiraling out of control. It took me years to recognize that my unwillingness to relinquish my expectations, especially during the emotionally charged holiday season, only heightened the disparities I mourned.
During the first Christmas season we celebrated with Daniel’s stepfather Andy, I spent the week after decorating our tree painstakingly replacing the ornaments my son repeatedly plucked from the branches. After inspecting them by sniffing, then tapping each one three times with his forefinger, he left the ornaments strewn haphazardly throughout the living room and beyond. After restoring the tree to its original design dozens of times, one day I’d had enough. Scooping all the ornaments into a bread basket, I tossed them on a table next to the tree.
“There you go,” I declared when my husband came home that evening. “There’s your Christmas tree.”
”Well… ” he began cautiously, noting my mood. Then he gestured toward the basket like a game show hostess. “Picture, if you will,” he proposed, “how lovely these ornaments would look on the tree.”
The tradition of the ornament basket was born. And Christmas still came, just as it was supposed to.
Daniel doesn’t pull the ornaments off the tree anymore. When he comes home on Christmas Eve from his group home in Wisconsin, he is content to stand in front of it, tapping an ornament here and there, touching a light bulb to test for warmth beneath his fingers. I’m not sure if he remembers our trees of Christmases past, but I think so. I can see it in his eyes.
But we’re on to bigger things these days. We spend the afternoon of Christmas Eve at Denny’s, Daniel’s favorite restaurant. It is one of the places he is comfortable, and that makes all of us happy. He knows when we are there that he’ll be tickled by his sister Natalie, and reassured that his favorite foods will soon arrive; that Mom will take many photos and Andy will squeeze his hands between his own, as Daniel has always enjoyed. He looks forward to this visit every year. It seems to be a happy memory for him.
And that is the way it is supposed be.