This ‘In Their Own Words’ post is by Susan Senator, a writer, activist, and the mother of three boys. Susan is the author of “Making Peace With Autism,” and “The Autism Mom’s Survival Guide.” Please visit Susan’s website for more of her blog and other resources.
I was looking for a place to toss a shovelful of snow that I’d just dug up next to the car when I thought about Nat. Nat was still at the group home, but we had told him that as soon as the snow stopped and we were dug out, we’d come get him. I threw the snow right or maybe left — we are really running out of space and the drifts bordering the driveway are about five feet high by now — and I imagined Nat and his brothers shoveling.
We are all really good at shoveling these days. I pictured handing the shovel to Nat and seeing him push it down and push the snow aside. No problem. But it used to be. Such tantrums! He couldn’t be outside with us. And if we left him inside, he’d freak out in there, watching us working outside. The horrible feelings I had, knowing I couldn’t be inside or outside. There was no place to go, no place to be on this earth because my child was so unhappy and he could not understand what was going on.
Now he shovels snow willingly and competently. Yet another skill, another feather in Nat’s cap. How did this come to be?
We made him do it anyway. We lived through tantrums. We had shoveling (shopping days, movie outings, parties, holidays, vacations, meals, sleepless nights) days that ended badly. Nat has been exposed to a lot of activities. It’s as simple — and difficult — as that. The more Nat experiences, the more he is able to do. As soon as we realized that we needed to familiarize Nat with as many things as possible, we started to take him out, make him be around people and go to new places. It was almost always really, really hard. We tried a Cape Cod vacation: terrible. Each year, not as much. Stayed with my parents: it got better. Switched to the ocean, rather than the bay side and brought boogie boards: success. Still difficult, because he walks in circuits and ends up too close to others’ blankets. But still, we enjoy ourselves for a lot of it. Not all of it, but enough.
Challenger T-ball; failed. A year later we tried Special Olympics gymnastics: success. But bumpy success. Nat sometimes slapped people or had tantrums or spaced out. We stuck with it. Or rather, Ned did. I’m the coward of the two of us. I find out about stuff and dream things up, but Ned very often ends up following them through. You gotta have at least one parent who doesn’t mind people staring, or an occasional pinch. I think that even if you are a single parent, you should find a way to have a second person around sometimes.
Vacuuming. Food shopping. Parties. Shoveling. We took Nat places. Even for abbreviated visits and outings. Because even if he had tantrums during the event or activity, it was becoming a part of his repetoire. Stored data. Information he could draw on for the next time. If there was a tiny seed of it already there in his mind, no matter how sharp and horrible that experience had been, it was now lodged there, resting in his gray matter. And that is the most fertile ground there is.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.