A family friend just died of cancer. A really good man who was fun and funny, who enjoyed life to its fullest, and whose warmth and generosity will not be forgotten. I was really sad. For his daughter, who is a close friend, and for his wife of 45 years…one of the strongest women I know. We attended the funeral, a full Catholic Mass. I entered the church with a heavy heart, willing myself not to cry.
So many times people have said to me “Well, at least it’s not cancer.” when talking about Harry’s autism. I am rarely hot-headed, but I’ve thought a few things to myself that I wouldn’t say out loud to a well-meaning friend who uttered that phrase. I’ve lost several friends–two under 22 years old–and family members to cancer. But at times, cancer seems like a cakewalk compared to what we live daily. At least someone with cancer can tell us what hurts…for a long time, my son could not. So, I am not minimizing autism when I say today they were right. At least it’s not cancer. I’ve still got a shot at making him well.
The service started, and I was wrapped in the familiar. I am not Catholic myself, but I attended an all-girl Catholic academy, and my kids are baptized Catholic. I took religion classes all through grade school and have been to enough masses to know every song, every response, every prayer.
As we sat there in a packed church mourning our loss, I took comfort in the sameness. The rituals. Knowing what to expect, when to kneel, when to stand, repeating prayers I’d uttered hundreds of times growing up. And maybe for the first time, they weren’t just words. There is something beautifully reassuring about the deep seated, ages-old rituals of the church. To sit, to stand, to kneel, to respond with “Lord hear our prayer”. The repetitiveness was soothing to me.
It struck me that this is how Harry must feel at times, when he tunes everyone around him out, holds his ears, and runs. Back and forth, back and forth, across the lanai. He doesn’t stim all day long anymore, but he does run when we have a house full of very loud people (and if you met our super-supportive extended family you would know that loud is a gross understatement). He takes comfort in the repetition and sameness when his surroundings become unpredictable. We used to try to stop him from running, but given our deeper understanding it now seems mean to take away what soothes him.
Lately I’ve joined him and he loves it. He immediately stops running with blinders and engages, turning his head back as he runs, looking at me to make sure I’m running behind him. The family joins in. All running behind him, imitating his actions. He laughs so hard at this, obviously delighted we’ve validated the one thing he uses to keep himself together when he is stressed. And suddenly, it’s not a stim. It’s a bridge. And we are there, connecting with him in a way he truly appreciates and understands. In the same way that the church and the rituals connect me to something more encompassing than myself.
We are on our way to recovery. We are not there yet, but our two worlds move closer every day. We get to watch and wonder as he does things he’s never done before, marveling that he wrote his name, or said Mama five times in one day. And I feel lucky to be a witness to that. Perspective.
To those in the depths of it right now, know that perspective will come with healing. Read everything, research relentlessly, talk to everyone. Find what works for your child, no matter how long it takes for you to find it. You CAN do this and you’re not alone. There are many of us here to help you along the way. Just reach out and ask.