By Kristen M. Scott
A woman I know has a standard response when people remark on her parenting a profoundly autistic boy. “I don’t know how you do it!’ they marvel. “Me neither,” she has learned to say, “me neither.”
I thought of that today when I drove away from my son’s residential school after an unexpectedly painful visit, where I had to pull myself from Daniel’s grasp as he struggled to make himself understood, to tell me what he wanted, but his limited language got in the way. The saddest part was that I knew what he was trying to tell me. I knew that “bah” meant “bag,” that he wanted to fetch his overnight bag. His lack of words did not impede my understanding, my knowing what was in his heart. He wanted to come home.
He adjusted so well, it seems, to life at this school an hour and a half from home that I wonder sometimes if he remembers his life with us in Deerfield. I go into his room and look at the remnants of his life here, at the photos and art projects, the “certificates of participation,” awarded to each child on a team, regardless of performance. I hold in my hand a newspaper clipping of the dolphin exhibit at the Shedd Aquarium, which he so often retrieved from his night stand and pointed to with earnest, asking hopefully “Fish?” I remember the times I told him, “Yes, we will go, Daniel, we’ll go see the fish again, I promise, we’ll go soon.” And then the time came that we never went again.
Does he remember his life back home, running through the grass in our backyard and up the steps of the deck to his favorite spot on the corner, able see the street out front, yet secure and secluded behind the branches of the trees, watching the bubbles he blew again and again as they floated for a few, luminous moments before falling and disappearing against the grass? Does he remember the freedom of watching his videos at his leisure, unencumbered by schedules or the preferences of peers who are now his “dorm” mates, those other boys who live with him now but are sequestered, too, in their own private worlds? Does he remember racing through his bedtime routine, running downstairs to toss his clothes in the laundry, then darting to the freezer for his ice cream, secure in the knowledge that he would have it, that this was his home and he could have this treat, whether it was good for him or not? Does he remember the cottage in Grand Haven and running down the sand at the edge of Lake Michigan, watching the splash of each pebble or stick he would toss with such spirit and intention? Does he remember the nights I lay with him and sang to calm him, the melancholy tunes from Don McLean or James Taylor; does he remember my tears, shed because I knew this day would come, this very day I am living now? Does he remember?
I knew today that he does, and my heart breaks again for all that autism has cost him. I left him in front of his school, his home now, with two aids, compassionate, patient young men who understand my son, as well as any of us can, who would coax him back inside, and help him to clean up from the ice cream and soda spilled in my struggle to break away. They were planning a trip to the Milwaukee Zoo today, and I drove home anguished that my visit had ruined their plans for this special, off-grounds excursion on a beautiful June Sunday afternoon. Our own family trips to the zoo, or the amusement park, or the aquarium, became fewer and more fraught with difficulty as Daniel grew older, our world and his shrinking each year as this disorder encroached more dramatically as he matured. We’ve come to rely now on these supervised outings, well-staffed and organized, allowing for the extremity of behaviors of these children of my son’s world. These are what my son looks forward to now. I could not bear that even this would be spoiled, tainted by comparison to his memories of what he once had with me, but which I can no longer share with him.
I have not forgotten that last, disastrous trip to see the dolphins, aborted even before we passed the entrance, lost to an inexplicable change of mood that became a rage requiring restraint in view of hundreds of onlookers. I don’t kid myself anymore that it would have been reasonable, or practical, or even safe to continue these attempts at normal family experiences given the parameters of my son’s disability. I have long acknowledged that this is not to be so. I still remember, though, his joy as the dolphins leaped and splashed, and how he’d twist his fingers in front of his face with excitement, how he’d join the audience in applause, because he’d learned that this is what a person does when he is happy.
I called his school with a heavy heart tonight, expecting to hear the unfortunate details of a thwarted or traumatic zoo visit. It seems, though, that Daniel rallied, just a few minutes after I left. He had pulled himself together, and went eagerly and cooperatively on their outing to see the animals, to visit a park and eat a special dinner off-grounds. Despite the staff’s own misgivings, my son behaved flawlessly, and smiled, and laughed and enjoyed himself tremendously. He went to the zoo today.
I can just imagine it.