A recent family trip had me thinking about travel stories told me by the families I work with. Summer months bring lots of questions to therapy about how to explain to extended family members and friends the challenges of traveling with children with disabilities. Here's a brief summary of some of the issues they bring up.
The most commonly reported summer travel experience with children with special needs reported to me is fatigue. Summer travel vacations are somewhat stressful for most parents of school-aged children. For parents of children with disabilities, there are often additional challenges to consider. Most special needs parents start the vacation already very tired. It's physically and emotionally draining to raise children with special needs. Many children with special needs struggle with flexibility, so even minor changes in the environment can cause stress that gets in the way of important things like sleeping and eating. It is not uncommon for parents to report getting much less sleep on vacation than normal. Travel also upsets routines that children and families depend upon for self-regulation at home. In many cases, vacation significantly increases dysregulation in children with special needs. Reestablishing routines for sleep and self-regulation can take weeks following a vacation.
The average schedule for a family while on vacation is typically way beyond what the family with a special needs child can handle. Most travel is physically uncomfortable. For special needs children, most novelty is uncomfortable. What results is that, when traveling with or visiting others, families with children with special needs cannot attend all of the events. Often, parents are grateful to be left at a hotel or someone's house while the rest of the group goes sightseeing. Sometimes parents need to take turns napping (or crying) during the day because they were up all night. However, there is a sense of missing out on the fun and having a separate experience from the rest of the group. Typically, the family's ability to engage in social activities and sightseeing decreases as the vacation goes on because energy levels are depleted by poor sleep and lack of access to routine. The sense of isolation can intensify.
Parents often feel bad for having to negotiate between the needs of their special needs child(ren) and the needs of the group. Some parents report feeling bad that their spouse cannot relax and even has to work harder on vacation than at home. Sometimes guilt can be exacerbated by critical relatives who fail to understand the complexities of parenting a child with special needs. Parents can feel like their special needs child's experience is being limited by their insufficient parenting. I coach a lot of highly skilled and diligent parents to consider what an amazing accomplishment it is for many children to even get on an airplane or try unfamiliar food. Many parents feel guilty and disappointed when their child passes on a full day at a theme park or visiting a famous historical sight. Meanwhile, the child is doing all they can to keep it together and doesn't usually notice the parent patiently giving space they desperately need.
Virtually all of the parents I work with report having to manage bad advice from relatives on how to raise their special needs child. Such advice usually comes from their own parents, who are ostensibly trying to be wise and helpful grandparents. The extra emotional burden of responding graciously to someone who predictably and routinely says such offensive, insensitive, and tone-deaf things is extreme but necessary. I commonly debrief such situations with parents and help them sort through the terrible advice given to them on the trip. I often confirm that the advice is truly counterproductive and untimely. We usually have to talk again about how to set and maintain boundaries with such family members. This is often a discussion I have had with parents multiple times as I have worked with them over the years.
The average individual might be surprised at how much of a family's finances go toward treatment or intervention for special needs children. Health insurance can cover some expenses, but most families I work with budget for therapy or therapeutic tools the way others budget for entertainment. This means that many families of special needs children have tight budgets, and the idea of "saving for a vacation" can feel somewhat exotic, even if some time off would do the parents well. When such families go on vacation, this can often put additional stress on parents to "make it count." More than one family I've worked with has had to pay extra for changing plane tickets because a child refused to get on the first plane or needed to take an early flight home (i.e., couldn't make it all the way through the trip), or needed their own hotel room (instead of sharing a bed with a sibling), or paid for entrance to Disney just to spend an hour in the Disney store before heading back to the hotel (with a parent) to rest. Splurging when you're on vacation can feel luxurious, but many special needs families had to splurge just to get there and might be unable to splurge any further.
I hear this one less often, but often enough. Some special needs parents report that rather than being a stressful but ultimately beneficial experience for the family, their child is actually resentful for being "forced" to go somewhere. Parents come home from the trip to find that not only are they tired, financially stressed, and really need a vacation, their relationship with their child is even more strained and in need of repair than it was before they left. Consequently, this can also happen when parents want to treat their kids to a nice meal or other special event. Not only does it go unappreciated, but it actually costs the parents social currency with their child.
Not all parents of special needs children have the same experience, but I would suspect all of them know what I mean when I call the summer vacation "expensive torture." I do believe that, in most cases, such vacations are a net positive for families, but I also know that there are significant costs to these trips that are not easily understood unless experienced. Part of the reason I wrote this post was to help parents of children with disabilities start the conversation with each other, if necessary, and their extended family and friends about what their experience is like with the iconic and romanticized act of taking a summer trip. Not everyone is having the same experience, but understanding goes a long way to making the experience more positive.