Autism Vacation: Not Quite a Piece of Cake
Could we make an unstructured vacation work for our 30-year-old autistic son?
Posted Aug 02, 2020
This summer we almost did not go on our annual Cape Cod vacation. The coronavirus pandemic had curtailed so many of our usual activities, from grocery shopping in an actual store to writing in a coffee shop. I was relearning things I’d taken for granted, like how to ride my bike wearing a mask and counting to 20 whenever I washed my hands.
So the idea of setting up a little house—someone else’s house filled with someone else’s germs—at the beach seemed almost beyond my comprehension. My husband, Ned, wondered if we would feel safe, even with the new rental house cleaning guidelines? Would we be able to be on the beach, packed with summer crowds from everywhere in the world?
Although these were the questions that loomed large in my head, an equally big factor was that we would have our 30-year-old severely autistic son, Nat, with us for the whole vacation week and my husband and I were not looking forward to that. Nat had been living with us since March, and not in his group home or attending his day program. And even though we had gradually worked out a routine for him, vacation days are long and unstructured. In normal times, Nat is anxious and unpredictable on the beach; he insists on going but once we are all set up he only wants to eat snacks and then leave.
“Should we even go?” Ned asked me a few weeks before the vacation date.
“I don’t know,” I said, wishing there was some kind of certainty, something to hang on to during this strange period of pandemic. “I guess we can just cut it short if it’s no fun.”
And so we made careful preparations, unlike our usual pile-it-in-the-car style. I’d bring all Nat’s bedding and our own pillows and sheets. I’d wipe down faucets and doorknobs when we got there. We’d try the beach and be ready to just leave if Nat was irritable or if the other beachgoers were not social-distancing safely.
I’d bring my cookbook, Mom’s Big Book of Cookies by Lauren Chattman, which has been our baking bible ever since Nat and I started our little day program together. Baking is a great way for us to connect because we share a delight in sweets. He’s good at following steps, and I’m good at creatively skipping steps. We don’t care what the thing looks like in the end as long as the batter is good.
So why not bake daily while on vacation? We’ve always wanted a way of avoiding the hottest and most crowded time of day on the beach, so why not bake during that time? I brought a week’s worth of the basic ingredients, determined to give Nat at least one bit of consistency in his day. I could probably use baking as leverage to get Nat to do other vacation things with us; if not, at least we’d have a good pile of cookies for him to eat on the beach.
The baking proved to be fairly easy to do every day right after lunch, and our stuff came out OK, if slightly undercooked.
(Well, who wants a dry cookie anyway?) But even with a slew of peanut butter cookies, Nat was acting like he wanted to leave almost as soon as we got there. It was one of those blistering hot days by a frigid New England ocean, so we couldn’t get in, and yet we could barely stand the relentless sun. So we left after about an hour, feeling defeated.
By our second day there, we were both feeling like this vacation was not going to work. Everything felt like a chore. It wasn’t germs and it wasn’t crowds that were the problem; it was how limited we felt by Nat.
This made me feel sad and guilty. It is not Nat’s fault that he needs structure and familiar, dependent activities. Or that he didn’t want to swim. Or only wanted to eat. But Ned was unfazed. “Want to try the bayside?” he cheerfully asked on our third day. And with that, our 36-year marriage dynamic swung into action: If one of us was confident about trying something, the other could relax and it might just work.
It was around 4 p.m., and we really wanted to swim. The tide was going to be high at that point so I said to Nat, “Let’s just swim a little bit at the bay. Maybe you want to try the donut raft?” In this way, I was offering him the appeal of swimming only “a little bit,” so he knew he wouldn’t have to stay for long. And giving him the specific plan of floating with the donut could possibly make it work for Nat. Well, we were going to at least try and of course leave early if we had to.
I eased Nat into the donut and swam right next to him. He wasn’t smiling or anything but he wasn’t sucking his thumb desperately or scrambling back to shore either. Ned and I tried dragging him and spinning him and when I looked at Nat’s face it was a little bit relaxed. He was tolerating it, which satisfied me because a long time ago I learned that with Nat, tolerance led to familiarity which led to acceptance which sometimes if we were lucky, led to enjoyment.
Once we were back on the sand, Nat tore through all the snacks, which seemed fair to me.
The next day we were back (of course). This time, as hoped, tolerance morphed into familiarity/acceptance. Nat was, if not happy, definitely OK with bobbing around in the warm wavy water, at least long enough for Ned and me to really let loose and play.
And just like that, we had a vacation routine. In the mornings, I would ride my bike, and Ned and Nat would take a walk to the beach. We’d have an early lunch and then bake. Hang around until late afternoon, and then go to the water and float. Come back, take outdoor showers, and order seafood takeout. The days started to flow into one another, indistinguishable, as happens on a good vacation.
I was really proud of us for making it work. I can’t quite figure out why it did; I give Nat most of the credit for being willing to try despite a lifetime of anxiety. I also think that Ned and I had created just enough of a routine that Nat could be comfortable in vacation mode. And of course, our “realistic” (or “low") expectations, our willingness to simply come home if we had to, helped a lot. Or maybe Nat just really loved floating on an enormous pastry, almost as much as he loves baking them.