My son’s trail of sparkles

Gertrude Steuernagel

My son was diagnosed with autism shortly before his third birthday. I wasn’t surprised and had suspected autism. That said, I was unprepared for the depth and breadth of the challenges autism would present to us. Sky has classical autism and is on the severe end of the spectrum.

His verbal abilities are limited. I have never had a conversation with my son. He does not ride a bike. He does not tie his shoes. I say “does not” because with autism it is impossible to tell if it is “cannot” or “will not” or some combination. He will never drive a car or live independently. He will never be a husband or a father. The first questions I asked when I heard his diagnosis were “will he learn to read?” and “will he get married?” In that order. Autism helps you clarify what matters to you.

Sky had difficulties in preschool with scissors. He did not have the fine motor coordination or motor planning skills he needed to cut construction paper pumpkins. I worked with him with limited success and eventually, as I always do, arrived at my safe place, my “what difference does it make” place. The world, I decided, could make do with one less construction paper pumpkin. I forgot about scissors and the challenges they posed for Sky.

Two years later I went to his first kindergarten parent teacher conference and heard “Sky is quite good at cutting but has some difficulties with complex patterns.” Somehow, he had made it past learning how to place the scissors on his fingers, past how to coordinate paper in one hand in scissors in the other, past the conundrum of whether to cut inside or outside the line on the paper. Sky could, in teacher speak, “scissor.” Life went on and I thought no more of scissors.

Today Sky is 16 and, in addition to autism, he now carries the diagnosis of obsessive compulsive disorder. He can read and he is not married. Sky has many rituals, one of which is cutting paper into tiny pieces. He particularly likes to cut cellophane fruit bar wrappers into confetti sized pieces. The fruit bar must be strawberry. My nightly ritual is to get down on my hands and knees and pick the sticky confetti off the hardwood floors in the kitchen and family room. I always miss pieces and these are tracked on the soles of our feet or shoes throughout the house.

One night I was frustrated and angry with the universe. Why, I thought, does he do this? He doesn’t even eat the fruit bar. Then I thought back to the preschool days, the days when Sky did not “scissor.” I started to smile. The smile turned into a laugh, the laugh into a guffaw. My son the cutup had once again proven to be my best teacher. Try your best; do what you can; the universe will come to you.

I still don’t enjoy picking minuscule pieces of sticky cellophane from the kitchen floor, but the pieces that get tracked through the house? I try to appreciate the sparkle they bring to aged carpet, the pattern they make on worn tiles. I see those sticky cellophane bits as a trail my son leaves for me as we navigate this strange world of autism, because we do navigate it together and always will. Sometimes I lead and sometimes Sky leads and sometimes we get it right. Like we did this time. Sky can use scissors and use them well. He mastered that skill and he will master others.

Neither Sky nor I will ever win the Nobel Peace Prize. Neither of us will write the great American novel. We will, however, make each other laugh. We’ll challenge each other to be better people, to be a better mother and a better son. He is my dance partner and I his. Sometimes we step on each other’s toes and sometimes we navigate with great grace. I’ve learned when to lead and when to follow. I know Sky will continue to leave a trail for me, a trail of sparkles.

Gertrude Steuernagel is a professor in the political science department. Contact her at [email protected].