Traveling with our ASD child

One mother’s view

Fifteen years ago, we adopted Matthew, our son with special needs from Russia. He was 3 at the time. I never imagined that I would learn so much in such a short period of time in my life. Being an architect, I tend to constantly focus on environmental issues and spatial strategies that support the success of our three children living together. Why would this be an issue? Well, our high-functioning ASD son can struggle with good choices and during the bad choices, can cause incredible frustration for our younger children resulting in enormous conflict. At times, this conflict has been life-threatening. Not always mind you, but often, especially during his pubescent years.

Starting from the early years, our two younger children continuously experienced invasion of their personal space surrounding them or trespassing in their room. Matthew (my ASD child) would steal or break their belongings (rarely with malicious intent though). In addition, Matthew would abruptly interrupt their conversations and most often ignore their topic of conversation to focus solely on his perseverating thoughts. Now, I have watched how these repeated behaviors have had a permanent impact on the rest of the family. We have lived in a heightened state like a tightly wound rubber band on the propeller of a paper plane always waiting for the next explosion. We completely lost the ability to allow ourselves to relax.

So, again being an architect, I found that I began to apply strategies to spatial areas that, at the minimum, permitted a bit less chance of violent interactions. Now, I want to share a few of these basic strategies with other families who are faced with similar circumstances as I wish I had known these tips when I first started to tackle these issues. For the purposes of this article, I will focus on traveling and family trips.

Buying a car: Well, if you have the choice, buy a car that has three rows of seats. To believe that you can somehow teach your young, still-developing children how not to negatively react to the behaviors of your ASD child or not be impacted by them, then it is my opinion that you are expecting too much maturity from your young children. I call my current 13-year-old son an “old man”. Why? Because he has been forced to witness things in his life that many other children will never experience in their lifetime. Like what? Face-punching, body slamming, head banging…and all hard, frequently with blood involved. The positive outcome is that I have two children that are becoming compassionate of all differences and who will become incredible advocates for their brother and others as they mature.

Okay, back to the car. I found at various times through the last 15 years that it was basically impossible for my ASD child to be seated next to my other children. Now, it certainly depended upon the age of the kids and the length of the trip. Strategically, 80% of the time, I sat in the back rows with my children so that the front row always separated one of them from him and I was at arms reach to deal with any other issues. I learned to always make sure to announce the seating arrangement while still in the house or as we exited the door. I would always make sure to reverse that seating assignment on the return trip in fairness to the children. I had a Suburban with the video screen so that I could use this as a distraction. If we were traveling in a two-bench seat car (my husband’s or a rental), then I always sat in the back between my children. You may think this sounds extreme but my goal was to find small amounts of peace in a life of constant war.

For long trips, we ultimately came to accept the fact that the trip either could not include our ASD child or we had to fly him ahead to someone (grandpa) waiting on the other end while we drove. Otherwise, after about two to three hours, the togetherness did not work for them. Now, there was nothing about this decision that harmed my son Matthew. He loved flying! He thought it was special. He loved talking the ear off the person next to him on the plane. He loved arriving early to a relative’s house. If we chose not to have him come, he also was okay because he always had the choice. When the option was to see a new movie and play his computerized games at home or go camping, he chose to stay home. So, we as a family began trips without him when he was about 14-years-old and he chose to stay home with a dear family friend (who was also his autism technician). The hardest part of this decision was that we, as his parents, had to learn how not to feel guilty. We quickly learned he was as happy as a lark for the break from all of us and the respite that he likely experienced as well.

Reserving a hotel room: This was another experience where we had to live and learn. When making your hotel reservations, I urge you to ask questions. Don’t feel bad about keeping the reservation specialist on the phone for 30 minutes. I can remember when reserving at a large national lodge, I called them three times with questions before I made the reservation (there are only two rooms in this huge lodge that support us). When you decide that you are going on a special trip together as a family, you need to make sure that the room supports success, not failure. How so? Well, I know that anything I could do to have a room with more floor area and two bathrooms was very important. I learned the hard way when, one night, we had one of our worst nights of our family’s life in a single hotel room. So, from that point forward, I vowed to make sure that the architecture of the room supported the best stay. I only wish hotels would get on board to design rooms specifically for families like ours. And wouldn’t it be grand if Disney had a resort for families with special needs children!

What do you need spatially for success? For your ASD child, you need a bathroom just for him or her. All others in the family can share a bathroom if needed. This helps allow the child the time to do their routine, which often can require multiple, multiple prompts. You need a truly separate sleeping area, not just a separate bed. Our son rocks himself to sleep every night. This motion and related noise can be annoying to his siblings. They would begin to pick on him. So, it is just best to give him the space he needs and the others a separate room for their needs also. Matthew also hoards stuff and organizes his possessions in an obsessive way (OCD). So, if the other children touched his items, things exploded – all the more reason to give our son his own defined space with separating walls.

Watch the circulation patterns, too. This will help avoid conflict. I would often set up Matthew’s snacks in a certain area and make it clear that they are his. This prevented him from crossing his siblings’ path abruptly causing physical contact. When I had these extensive conversations with reservation clerks, sometimes even having them fax room layouts to me, I then noted my address book as to specifically which rooms (or cabins when camping) supported our family. Now I have a record of them. What I know we cannot do is stay in one hotel room with two queen beds and a roll out. What I know is that we cannot place our three children in one room. Oh my, I learned that the hard way.

In closing, I hope you find these tips and techniques useful, and they lead you to happy family travels!

Cathy Cherry, principal of Purple Cherry Architects, is the mother of an 18-year old on the autism spectrum (Matthew) and the sister of a Down syndrome brother. Through her lifelong interactions and observations of her brother and son and her educational advocacy for her son, she has an acute awareness of relevant triggers and environmental issues that impact individuals with disabilities. For more information, see www.purplecherry.com to visit her Purposeful Architecture work or read other articles she has written.

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Traveling with our ASD child

One mother’s view

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