This guest blog post is by Nicole Jankowski. Nicole is a writer and mother of four, you can read more at her personal blog, www.momof4istired.com.
On the stage Elmo and Grover are dancing, singing a song about being kind and loving your friends, and beside me, in the balcony, my son is smiling. He is waving his hands wildly along with the beat, closing his eyes and rocking back and forth. He is the happiest I have seen him in months, overcome with joy, watching his favorite characters sing and dance. He is watching the lights make their way across the floor, across the walls, over his own hands.
It is his birthday, today. My oldest boy is twelve years old. He has autism and is disabled and differently-abled in so many strange and wonderful ways. And alone, together, we are marking this special day with our annual tradition---a trip downtown, to the theatre to see Sesame Street Live, on stage.
This annual tradition has come to represent my son’s birthday more than presents or cake or any celebration. Because he doesn’t talk, I can’t be sure if he knows it is his birthday. But it doesn’t really matter much anymore. Every day for the last week, I have showed him the video of the show we would be seeing, every day for a week I have counted down on my fingers. Five days until the show, son. Four, Three, Two. It’s today, my darling. Today we will go. This he understands. I can tell by the way he woke up early, by the way he is waiting with his shoes and coat, when I tell him it is nearly time to go.
Our row in the balcony is filled with babies and young mothers, with toddlers in Oscar the Grouch t-shirts, holding stuffed Elmo dolls. These families do not seem to notice us: me, a mom in her late thirties with the nearly teenage boy, sitting on the end. Or if they do notice, they are kind enough not to show it. But I know that we are different than them, not just because my son is a year or two away from shaving and sitting right here, dancing to the music of Elmo and his friends.
As my son aged, I struggled with how to handle the limited nature of his interests, which were not often considered “age appropriate”.
Ten years ago, when Dominic was first diagnosed with autism, therapists often advised me to gear his learning and interests toward developmental norms---this was easy to do when my son was 3 or 4. Not unlike other preschoolers, he enjoyed watching shows like Sesame Street and Thomas the Train, he liked putting together simple puzzles and playing at the playground. But as Dominic got older, his interests remained the same. While no one at the playground thought twice about the five-year-old boy climbing up and riding down the slide over and over again, other parents seemed to easily notice the 11 year old adolescent cramming himself into the swings or standing still at the top of the monkey bars. It didn’t bother me very much, the stares of other parents and it certainly didn’t bother Dominic. And when it came to his other interests, Dominic seemed to find so much joy in watching Elmo and Grover dance on his ipad; and Thomas the train soothed him in a way that words, or feelings and people could not.
But as the years passed, I started to wonder if I was hurting my son, by allowing him to continue to like the things that made him so different from other boys his age. As an eight-year-old, then a ten-year-old, Dominic stuck to his small cache of television shows, to Elmo and Thomas and SpongeBob Square pants, while boys his age, including his brother, moved on to Transformers and Star Wars and football, I worried that I was letting the distance between him and “normal” widen. Because of the autism, the other kids already knew he was “weird”. This was not something that he could figure out on his own—it was my job to help him navigate the complicated world of social interaction. By letting him play with the developmentally inappropriate things he loved, was I only letting him become “weirder”?
I thought about taking the toys away.
I thought about saying “no more” to the shows, to the books with Elmo on the cover and the videos with the children’s songs in them, the ones that made all his siblings (and his mother) cringe. I wrestled with my fears, with the worries that mounted as every year passed.
I asked my doctor, my friends, other parents of disabled children. No one seemed to have the answers. As I watched my son come home from a long day of school, hang up his backpack and wash his hands, just as I taught him, I felt happy and proud of how far he had come, in spite of his disability. He was doing his best, in all the areas that really mattered. And as I watched him sit with his ipad and smile over the jokes of Elmo and his friends, I realized it was not my place to decide what made my son happy. It was not up to me to force him into loving football, just because other 12 year olds loved football. It was only up to me to help him function, to help him find a meaningful place in a society that was never truly going to understand his beautiful mind.
It was not for me to decide what Dominic loved.
He was my son with autism, but more than that---he was just my son. I wanted him to find joy. And I wasn’t about to take away his joy, just because the rest of the world didn’t think it was age appropriate. I couldn’t ask him to change what made him happy, I couldn’t do that.
And so I didn’t ask him to change at all.
Out in the lobby of the theatre, during intermission, I am reminded that I am not the mother with the oldest child here. There are other children, adult children with autism and other disabilities, with mothers even older than I sitting in the audience. These mothers and I nod at each other kindly, knowingly. They, too, are sitting in the balcony. They, too, hold their heads up as they hold their child’s hand and wind their way through the masses of toddlers and their mothers. Our sons ignore each other with the soft aloofness that autism brings. But these mothers and I are the same, in the way that being different makes for a sense of community, an unspeaking thread of unity.
The little children run around the balcony, anxious for the second half of the show to begin. They make me happy with their joyous noise. But my son does not like the sound, he covers his ears and is agitated. They mystery of his disability is not lost on me, as I consider that he cannot tolerate the laughter of children, but is overjoyed by the loud singing and lights of the stage show. He wants to get back to our seats, he wants a glowing light spinner and some cotton candy. Dominic does not ask for these things, will not object if he doesn’t get them. But I am his mother, he does not need to tell me. He does not need to ask. I know what makes him happy.
I buy my son the cotton candy and the spinner, and we make our way back to the balcony. This time we move to the seats in the very back row, which are empty of people. When the overhead lights dim and the characters take the stage, I let my son rock and move his body with abandon to the beat of the music. There was no one back here to see, there was no one back here who cared.
I watch the joy spread across Dominic’s face and see how the strobe lights make tiny stars on his forehead, his eyes, his cheeks, which were still soft with the last grasps of childhood. I took his hand and swung it, dancing with him in the seat.
I knew that next year there might be whiskers growing on that chin, that next year, on this day, I would be the parent of a teenage boy. I thought about birthdays, about twelve long years of disability and difficulty and wonder. I knew that there would be harder days ahead. But I also knew as long as my son was happy, a year from now we would be back here again, sitting in the balcony, dancing to the music with joy in our hearts and stars in our eyes.