“Like every other family, we need and deserve a vacation and not just a relocation of home.”
With summer around the corner, NCSA is featuring a series about traveling—or not—with severe autism.
By Diana Haynes
Summers on social media often involve happy scrolls, and I easily choose the like button as I vicariously enjoy vacations through my friend's posts. As a mom of an 18-year-old autistic son, these types of vacations are few and far between. Most people are not aware of the excessive planning necessary for our family of four to attempt a getaway. It does not simply involve picking a location, booking a flight, getting the hotel room, and away we go. Sometimes I wish it were that simple. It may be easy to book a flight or reserve a hotel room, but flying brings a whole other set of challenges with a son who is not toilet trained. Have you seen an airplane bathroom? They can barely fit one person let alone two. This is just one part of the logistical planning that most people take for granted.
Admittedly, our summer activities tend to be limited and usually involve a few trips to the local amusement park. A typical day requires us to pre-register in order to obtain accommodations because of our son’s inability to stand in line. He also elopes and requires a wheelchair. While most people are mapping out their rides, we are praying that the customer relations line is not too long so that we can have some fun, especially for our 9-year-old daughter who is eager to enjoy the day!. When it is finally time to ride, our family can't go together because someone has to wait with our son because he won’t stay seated; therefore, it can quickly escalate to a dangerous situation.
Road trips are a viable option but come with their own set of challenges. These trips involve hotel accommodations and thankfully, our children enjoy hotel rooms; however, our son often gets up in the middle of the night, and we have to make sure he is not able to get out of the room. It is very difficult to truly rest on vacation when he is with us, and honestly, there often isn’t enough luggage to barricade the room door in order to keep him safe! While we have learned to cope with this reality, it doesn’t make the experience any easier.
(Stock photo)
A few years ago, we joined our extended family on a seven-day cruise. Big mistake. We spent the entire trip with a heightened sense of anxiety because of the unfamiliar territory of the boat. Our son needs constant supervision and even more so while on a cruise ship. Although we were with family, my husband and I never had a moment to relax or spend exclusively with our younger daughter. While everyone else was enjoying the cruise, we were counting down the days until it was over. Mistakingly, we thought that taking the trip with family meant they would pitch in and at least give us a little respite; however, we quickly realized that this was their vacation too, and they did not come to watch our son. When it was over, we were even more exhausted than when we boarded.
An opportunity recently arose to try once again, but this time we rented a house in Florida. Our rental was spectacular and came with a private pool; however, the unfamiliar house was lacking our usual safety protocols which made us nervous. When it came time for activities, our extended family once again made plans that could only include one of us, which left the other to stay behind and watch our son. It was at this point that we wondered, why did we even bother to do this again? We recognized this is not a vacation for any of us. It’s instead, a temporary relocation as all we have done is move home, and moving home for families like ours makes life even more difficult! For most families, vacation is an escape from the normal routine, but for us, it’s simply an exhausting extension of the normal routine.
These experiences have made us question the concept of vacation for our family. When our daughter was younger, we had more flexibility to plan our vacations around our son. Now that she is older, we recognize that she deserves a vacation where everything is not centered around accommodating her brother. Honestly, as parents, we also need a real vacation where we can unplug and be rejuvenated! To be clear I am not writing this as a complaint, but just sharing a reality. As we have become wiser, we understand that there will be times when we enjoy activities as a foursome, but there may be times it will just be the three or two of us, and that is okay. Others may not understand, and we accept this, but like every other family, we need and deserve a vacation and not just a relocation of home.
Diana Haynes is a wife and mom of two kids, including her teenage son who has Autism and Down Syndrome. She lives in a small New England town with her husband Clarence. She actively serves the special needs community in her local church and is the co-host and producer of the Bible Study Club, a live online Bible study podcast aired weekly on their YouTube channel. To learn more about their ministry, please visit www.clarencehaynes.com.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors. Inclusion of any product or service in a blogpost is not an advertisement, is not made for any compensation, and does not represent an official endorsement.