When Riley was five, we went to see one of her school friends in a dance performance. Riley made it through the sensory overload of the show, only to break down during the applause at the end, specifically when I "woot- wooted" enthusiastically for her friend. I remember her look. It wasn't a meltdown, it was a "you don't even understand," cringing, wincing along with her cries. A silent scream. She was in pain, and her mother, whom she loved, had unintentionally inflicted it upon her.
Five years later, things have changed.
Tuesday evening, we took the kids to Lilith Fair. At one point, sitting on our blanket on the lawn, I looked over at my husband, our daughter in between us, our son Seth on my lap, and mouthed, "Did you ever think?"
He smiled and shook his head. We were out there, having fun!
"I'm so glad you're old enough to do something like this," I said to Riley. And by "old enough" I meant, "able to."
She beamed. She wore her white peasant skirt and a purple tank top with a glittery butterfly on the front. Her jeweled white sandals completed the ensemble.
It certainly was loud. And wild. People were drinking. Lesbians were behaving badly. Two different couples stopped not twenty feet from our blanket to grope and dry hump each other in front of our children.
Man/woman, woman/woman, man/man...doesn't matter a bit to me, but I happen to think dry humping is something to be done in private, with that special someone(s).
We used it as a teachable moment, told the kids how people who are hurting often need to draw attention to themselves. We made sure they knew this wasn't representative of gay people, and pointed out the fact we know a whole lot of gay people who would never be so disrespectful. Then, as a family, we made the decision not to look at them, not to encourage them. Riley and Seth were happy to comply. Ew. Gross. Soon the couples lost interest and moved on.
It was dark by the time Mary J. Blige performed. The place was rockin' and we danced on the lawn. Seth did his Michael Jackson moves. HT did "the white guy." I did my thing, which consists of a lot of hip swaying, knees bouncing and of course the occasional hand twirling in the air like a lasso(my signature move). Riley sashayed her skirt to her own quirky rythym doing a move she learned watching the dancers perform The Paso Doble on Dancing With the Stars. We are so weird.
After Mary J. Blige, and before Sarah McLachlan, we were offered an upgrade from the lawn to the reserved seats. We took it and ended up in front of some really obnoxious young women. They screamed, and sang very loudly. So loud we couldn't hear Sarah. After two songs, Riley leaned over and politely asked, "Do we have to sit here? These girls are getting on my nerves."
Self-advocacy! No crying! No screaming!
We offered to just go home, it was late, but no! She wanted to stay. Riley wanted to finish watching the show.
We found new seats in a section we had all to ourselves. We told Riley how awesome she was to take good care of herself (and all of us) by requesting what she needed to make herself more comfortable. We were all much happier in our new spot and we finished out the six hour show, encore and all. The applause roared, and Riley did her own woot-wooting!
Thinking back five years ago when Riley could not handle applause at a school performance, I never imagined we'd be able to go to a concert like Lilith Fair. There were times I wondered whether we'd ever have fun again.
Life is not always easy. She still has profound challenges and needs a lot of support. But we have days like this as well, happy, happy, hopeful days.
Days which, truly, deserve a mention.
Michelle O’Neil has contributed to A Cup of Comfort for Parents of Children with Autism, and Special Gifts: Women Writers on the Heartache, the Happiness and the Hope of Raising a Special Needs Child. She has written for Literary Mama, The Imperfect Parent, Age of Autism, Cool Cleveland and Sensory Integration Special Interest Section (SISIS) Quarterly Newsletter, a professional publication for occupational therapists.
She has a ten year old daughter with Asperger’s and a seven year old son whose health is returning to balance after wrestling with the auto-immune issue PANDAS for a while. She’s married to the wonderful Hot Toddy and has been blogging about autism, family and spirituality since 2006.