My Autistic Son's Best Holiday Break Ever
By Shannon Des Roc... on December 13, 2013
BlogHer Original Post
Let's be honest: The winter holiday season can really suck for Autistic people like my son Leo. Leo does not appreciate it when weekly school routines suddenly disappear, and are replaced by random social occasions with loud music, flashing lights, and people who don't even try to understand autism. When the holidays arrive, Leo generally shifts to coping rather than functioning mode, and holiday meltdowns are not uncommon -- not just for my son, but for Autistic people of all ages. No wonder most articles about autism and the holidays focus on "surviving," "getting through," and otherwise managing stress. But does it have to be that way? What if we stop trying to shoehorn our Autistic loved ones into our version of Happy Holidays, and instead join them in their version?
That's what we did for Thanksgiving this year. We put together the most Leo-friendly holiday we could think of -- spending a week at the beach in Mexico -- and we went with him. It turned out to be the best holiday our family has ever experienced. There were no meltdowns. There was no stress about cooking a huge big family dinner. Leo got to relax, and everyone in our extended family group got to witness Leo at his best, got to see what a difference the right environment makes for our guy. When the week was over, not one of us wanted to leave, including Leo. And though part of the success was admittedly because we were at the beach in Mexico, much of what made our holiday happy can be replicated in different environments. What did we do to make it successful? What did we learn?
First of all, back to the part that holidays can be hard. And extra holiday stress aside, we have to understand that the world is already a constantly overwhelming place for Autistic people like Leo, because most non-Autistic people assume Leo should conform to their social and behavioral standards. Which he can and will do to the best of his abilities, as he is a good sport. But it is both excruciating and unfair to expect Leo to follow non-Autistic models of comportment all day long. He needs the freedom to be himself, or else he will implode. My husband and I felt that Leo deserved a holiday in which the expectation model was flipped in Leo's favor.
People -- even well-meaning people -- also tend to patronize Leo instead of treating him like a human being with fully-formed interests and preferences. And when you have a kid who has a hard time communicating, as Leo does, it's only too easy -- too dangerously easy -- to make his life all about following along, and putting up with, whatever the rest of the family does. So, again, we made a deliberate decision to fashion our holiday around what Leo likes to do.
Leo likes swimming, and he doesn't care if it's in a pool or the ocean. He also likes to stay busy, but within a straightforward and predictable framework that allows for choice. With those preferences in mind, I talked with my brother Mike about the layout of his time share in Cabo San Lucas. Mike confirmed that in his opinion the resort would be perfect for Leo, as there would be both multiple pools and a beach right outside the door of our room, and that Leo's entire day could be about swimming and deciding where to swim. Mike was right: staying at a resort worked beautifully, not just for Leo but for our entire family.
We also made sure Leo had lots of visual supports during the parts of the trip that weren't about swimming. In his non-holiday day-to-day life, Leo's visual schedule -- a velcro-anchored sequence of laminated and labeled icons -- helps reduce anxiety by letting him know or plan out upcoming responsibilities and transitions. His communication challenges make it difficult to absorb the same information conversationally or through the more traditional to-do list so many of us use to manage our time, but Leo wants to be on top of his day as much as anyone does. Besides, who wouldn't want to follow a visual schedule that includes a plane trip to the beach?
We also spent years getting Leo ready to take that three-hour flight. For a long stretch, Leo couldn't bear air travel at all, so either our family stayed put or my husband and I took turns hanging with Leo at home, while the other parent took his sisters to visit relatives. But gradually, thanks to maturation, Leo's willingness to try again, engaging/distracting gear like his iPad, and practice wearing noise-blocking headphones, Leo was able to resume flying. And he was a model traveler for almost our entire trip. However I think if we're lucky enough to take him on another international flight, we need to create both Immigration and a Customs icons for his visual schedule. Those two lines were looooong and slightly beyond Leo's tolerance level.