Years ago my son was in a study and I had to fill out a questionnaire about how he impacted our lives. Initially I said he did not prevent us from doing the things we wanted to do. Then I went home and thought about it. He controls what we do. We craft our existence around him. We do not go out to dinner or entertainment as a family. We rarely have people over. We stick to a routine that is crazy strict and have pushed that on our extended families when they interact. Carefully selecting battles becomes essential.
When you have a child who thrives on consistency and routine, vacations are problematic. By their very nature they are not routine or consistent. We spent many years with our vacation bet being how long it would be before a public meltdown. We have had tantrums in any number of places. The best ones do not involve me holding him so he cannot run off through glass and traffic. The meltdown becomes an expectation. The first time we had a vacation without a meltdown, he was in high school. We celebrated.
As a teacher, this path of being a parent of a child on the spectrum has been eye opening. I have mentioned hating vacations to my peers who look at me like I am crazy. Surely I enjoy the time off and away. No, my circumstances have made it extra work. I spent his entire elementary years planning each vacation day- two activities a day. We had a calendar of events and we stuck to it. Schedules were put together ahead of time and explained. Yes, we did lots of crafts. We spent an hour at the museum and drove home. Sometimes we would return in two days to spend an hour doing the same things again. We went to the grocery store with a behavior plan for behaving appropriately. When he was at school, this was his teacher's job. At home, it is mine.
My husband and I came to the conclusion that our vacation hell was partly our fault. We were vacationing beyond his capability. It frustrated us that every piece of the vacation had to have a plan for him. I'll take one, he'll take the other kid and we each do something specially chosen for the child. We traded off so that the drain of constantly being on edge and planning for contingencies and managing behavior did not wear too heavy. And so that my daughter had the opportunity to do some of the things she wanted to so. Flying meant trading off- the puker- my daughter gets air sick and has used the air sickness bag and my body several times- or the behavior- entertain for the entire trip with a schedule of activities. We had to plan lots of down time because he needs it. We could not have any outing take more than an hour and a half or there would be hell to pay as he reached his limits.
Many comedians have bits about needing a vacation to recover from vacation. I suspect that is true for all parents. It is especially true for parents of children with ASD. It makes me say that a work day is less work than a weekend or vacation day. As teachers we tend to dismiss, or at least not think too much about, the challenges our parents have with their children. We think everyone must relish vacation. So not true.
Personally we have resolved to pay more attention to him in our vacation planning. That means he does not get to go on every trip we take. He can stay home with his amazing grandparents. (I am, without a doubt, hugely blessed to be have family that gets him. So many families of children on the spectrum do not.) Or one of us can stay home with him. It means when he goes on vacation, we can tailor it to him without feeling cheated. Shorter trips, private space, and informal meals become a must with him.
Walking in my shoes has taught me the wisdom of trying to understand the shoes of other parents.