Liane Kupferberg Carter is the author of Ketchup Is My Favorite Vegetable: A Family Grows Up With Autism. This week she begins an exclusive series on celebrating the Jewish holidays in a family with special needs as a Visiting Scribe guest contributor on The ProsenPeople.
Purim is one of the many “they tried to kill us, we won, let’s eat” Jewish holidays. But for an autistic child like my son Mickey, Purim is first and foremost a holiday about sensory overload.
It starts with the noise: the raucous Purim spiel; the cacophony of gragers (noisemakers); the booing, howling, hooting, and hissing to drown out Haman’s name during the Megillah reading. Add blazing lights, the pink sugary smell of cotton candy, the bang and clang of carnival games, and the press of a hundred children pushing past him to grab the Dunkin Munchkins. It’s simply too much for an autistic child with a hypervigilant sensory system.
Just as Broadway theaters have been creating sensory-friendly theater experiences for kids on the spectrum, I’d love to see synagogues offer a sensory-friendly Purim. But maybe that’s an oxymoron. What’s Purim without the tumult?
It isn’t that our temple hasn’t tried. In elementary school, Mickey attended a Hebrew school class run by Matan, a nonprofit that advocates for students with special needs to have access to a rich and meaningful Jewish education. Our temple opened the Purim carnival to Matan students an hour early, so that they might enjoy the food and games in a less hectic environment. Even though it was in his beloved temple, the familiar common room packed with carnival games and trays of sweets was still a sensory assault to him. It took just ten minutes until he reached his tipping point. “Take me home,” he said. “I’m done.”
Words I’ve learned to heed.
When Mickey was eight years old and his brother Jonathan thirteen, we flew to Arizona for their cousin’s bat mitzvah. Mickey fidgeted but managed to sit through the service, even singing along to familiar songs. But when we moved to the banquet room, we slammed up against a wall of thrumming music and flashing lights. Mickey flung himself to the floor and clutched his hands over his ears. People stared. We scooped him up and took him back to our hotel room.
Having a child with these sensitivities opened a window into myself. As a kid, I also hated crowded rooms. Strobe lights. Roller coasters. I thought it was a character flaw, that I was simply too timid. I didn’t realize it was just the way I was wired — the way my son is wired, too.
Still, I wish he could enjoy Purim the way I did as a child. I remember the joy I felt dressing up as Queen Esther for our temple’s carnival. I wore a sequined, neon green costume with gauzy harem pants. I delighted in feeling like a different person. But Mickey doesn’t do costumes. “I hate dressing up,” he says. “I just like normal.”
“I’ve had enough.” He says it adamantly, often when the rest of us are still having fun. For years, I cajoled, reasoned, even bribed: I wanted him to sit longer, stay later, last through the meal. Was that more for my sake than his? Or am I beating myself up too much? It took me a long time to understand that he doesn’t mean to be difficult. He is simply advocating for what he needs.
I believe it’s my job as his parent to expose him to as many new experiences as I can. I want to open the richness of the world to him. When is it okay to push? How hard? When to pull back? It’s an intricate dance. Mickey is twenty-three now, and I am still learning the steps. I can still supply the props — the food, the family, the prayers, the stories — but now the rest is up to him.
After we retreated from the carnival at our temple, a thoughtful neighbor brought him mishloach manot, a Purim basket overflowing with cookies, chocolates, clementines, bottles of grape juice, and a pair of Purim finger puppets. “I love Purim!” he told me.
As I watched how excited he was to go through that basket of goodies, I realized that Purim was whatever Mickey wants to make of it. I don’t know what being Jewish means to him. But seeing his pleasure in something as simple as that basket of treats gave me joy. Maybe that’s enough for both of us.
Liane Kupferberg Carter is a nationally-known writer and advocate for the autism community and a co-author of the Autism Speaks Advocacy Took Kit. She will be touring for the 2016 – 2017 season on her book Ketchup Is My Favorite Vegetable through the JBC Network.
- Tom Fields-Meyer: Autism and God
- Jennifer Rosner: A Gene Mutation, a Motherly Connection, and the Power of String
- Tom Fields-Meyer: Reading and Thinking About Books
- Judy Brown: Of Autistic and Crazy
Liane is a nationally-known writer and advocate for the autism community. Her work has appeared in numerous publications, including The New York Times, the Chicago Tribune, The Huffington Post, Tikkun, Kveller, and Parents Magazine. She is a co-author of the Autism Speaks Advocacy Took Kit.