Vacation. It’s a word that always brings to mind relaxation and renewal, right? It’s about finding a way to stop the world from spinning a bit – suspending work and responsibility so that we can travel and create fun, happy memories with those we love.
Ideally, yes – that’s the picture we should all enjoy when we start squirreling away resources for our hard-earned retreats from life. But for parents of children with special needs, the picture often looks quite different. Vacations come with challenges, sacrifice, a need to strategize, and perhaps a need to see relaxation and renewal through someone else’s lens. We learn that in lieu of imposing our own agenda onto everyone around us, what we really need to do is honor the needs of each person in the mix so that everyone can experience feeling relaxed and renewed.
This is especially true when you have a child with autism.
Even at home, changes in routine disrupt life for our son Owen, now 18. People with Autism Spectrum Disorder (now numbering 1 in 59, according to the Centers for Disease Control), tend to thrive when they know what to expect, but often struggle when they face changes to schedules, environments, or people. That said, you can imagine why Owen, now 18, has been on an airplane only once. He was about 2 1/2 years old when we flew to Orlando to see grandparents and visit Disney World.
Between the airport elevators and crowds, he was completely overwhelmed and excited, which meant that he was difficult to keep by our sides. Despite his love for all things Toy Story, the stimulation was just too much for him to process. He was on total sensory overload, which meant that we all were. This was of course very disappointing for our other two children, Cameron and Grace. And Owen, not a huge fan of my mom, was less than cooperative when she babysat so that we could take our other two kids out to enjoy the park. Needless to say, that was Owen’s first and last trip to Disney and on an airplane. Relaxing and renewing were certainly not the words I might choose to describe that trip – not for us and definitely not for him. He was clearly far out of his comfort zone, a galaxy away from feeling relaxed or renewed (as we all were). We knew we needed to change up the strategy, which was not easy to admit.
Although extremely painful to let go of the picture we had in our heads of the “ideal family vacation”, we knew that our greatest expression of love would be to free him to enjoy his routine while we enjoyed future retreats. So we reworked our game plan from that point on. My mother-in-law, whom Owen adored and with whom he connected in a very special way, would come to babysit so that we could take our other two children away. While the vacations were few and far between, they were special and memorable. Even going out to dinner with Owen at home could be challenging – not only for us, but even more for him. Why did we feel the need to pull him out of his comfort zone? Who was it really for? He prefers routine. He needs routine. And he was quite happy with the new vacation routine when he got time with Grandma. This arrangement allowed his siblings to experience vacations like their friends did – just a bit different than we had envisioned as we had to leave one family member behind. It was difficult at first to do this, but when I really thought about what the concept of vacation meant, I knew I had the honor his needs as well as ours. Sometimes recognizing that one person isn’t thriving on a vacation means that the pictures in the rest of the album will be missing someone – but they are pictures of the relaxation and renewal we all need. And Owen’s picture, though taken from another location, could likewise capture a setting that would bring him well-deserved relaxation and renewal too. Acknowledging this meant releasing ourselves from our own preconceived notions of what vacation was supposed to look like, and instead focusing on what the ‘end game’ of a vacation really is for everyone involved. What Owen needed was vastly different from what we needed – and the best thing we could do for him was to be mindful of that.
As Owen got older and his behaviors improved, we found we could do the mere 15-hour-drive to Hilton Head to stay at Grandma and Grandpa’s house. We tried putt-putt golf without success. We went to a small water park, which was awesome. Owen loved the beach as we all do. If we couldn’t go out to dinner, we ordered take-out, giving Owen the chance to eat the food he routinely ate: chicken nuggets, pizza, waffles. And we always made special time for the other kids, one of us staying behind with Owen at the pool or house to watch a video while the other took Cameron and Grace kayaking or fishing or to a movie. We made it work for everyone – mindful of the different needs of each member of the family.
Almost 5 years ago, we made the difficult decision to place Owen at Anderson Center for Autism. Oddly enough, his admission coincided with a trip my husband and I planned for our 20th anniversary: a vacation in Hawaii, which we of course canceled. But as Owen began to learn and grow in new ways after having become stagnant at home, guess what we experienced? Our spirits became more relaxed and renewed. We relaxed knowing that we had a team along with us for this journey – a wonderful, patient, hardworking team. And as he grew, our sense of joy was renewed – just like we all experience on vacation. Owen has since grown taller, stronger, and more handsome than ever – but most importantly, has more patience ever before. The staff at Anderson have taught him so many skills, (including increasing his food repertoire, which will make family getaways a bit easier!). He has learned to answer ‘yes’ or ‘no’; so important because Owen has limited verbal skills and simply being able to say ‘no’ to an unwanted item makes all the difference. Far fewer meltdowns, wherever we are! And of course, the staff at Anderson Center for Autism, ever wonderful, have embedded ‘please’ and ‘thank you’ into his responses. ‘No, please.’
Last month, we took Owen down to Maryland to see his grandparents, who are getting older and having health issues. Unfortunately, we hit quite a bit of traffic. At 15, Owen developed seizure disorder; lack of sleep can trigger seizures. So, like our vacations – we honored and adapted to his needs, deciding to pull over for the night so that he could rest. When we arrived, he was thrilled to see Grandma and spend quality time in bed with her watching Tarzan and eating his favorite snacks. We went to the pool a couple of times and there was most certainly a sense that we were all feeling relaxed, restored, and renewed.
We’ve had to redefine what vacation looks like in order to capture what we all need and want from it. For us, that means more day trips than extended breaks: a trip to the local trolley museum. A nearby hike. A movie (complete with meds in backpack if the film comes with a seizure warning, which some of them do). And always, a stop for a pink frosted donut with sprinkles.
We still plan to take vacations with our older children, somewhat easier to plan now that Owen is in a full-time residential program at Anderson. Living there gives Owen the highly structured, predictable setting that makes him more relaxed and renewed than ever before. Through consistency, he gets to experience what we all seek to achieve when we travel. We respect his needs but also honor our own – and that’s a picture of which I can be really proud.