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. 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, he 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 or trespassing in their room. Matthew (my ASD child) would steal or break their belongings (though rarely with malicious intent). In addition, Matthew would abruptly interrupt their conversations and most often ignore their topic of conversation to focus solely on his perseverating thoughts. 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.
As an architect, I found that I began to apply strategies to spatial areas that, at a minimum, permitted a slightly reduced 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.
Buying a car: If you have the choice, then buy a car that has three rows of seats. If you 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 who 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. It certainly depended upon the age of the kids and the length of the trip. Strategically, 80 percent 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 2-3 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: Here 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 knew 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 we had one of our worst nights as a family in a single hotel room. 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 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. 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 www.autismfile.com Seating Strategy-Car Travel P =Parent 1.2 =Non ASD Child 3 = ASD Child Matthew’s snacks in a certain area and make it clear that they were his. This prevented him from crossing his siblings’ path abruptly causing physical contact. After 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.
Dining out: Please remember that finding humor in everything keeps you sane in difficult situations.
With that said, we had to go through hell to get to purgatory when it comes to dining out as a family. You first need to understand that Matthew chews with his mouth open. He also often does not wipe his mouth without us prompting him even though he feels the food on his lips. He tends not to use his knife and frequently picks up whole food items with his fork to then place the item in his mouth. So, I know he can put a whole waffle in his mouth as I’ve seen it many times. French toast and large potatoes also fit. These table manners have led to a lot of yelling at the table among our children. As his siblings would ask Matt to close his mouth, frequently (to piss them off) he would open his mouth even more. At home this ultimately led to different dining times as this was the best solution to reducing the conflict and picking and choosing battles.
When dining in public, the social pressure of strangers watching us helped with controlling these poor manners. However, his brother and sister had experienced the conflict so many times that their expectations were always that he would slip up. Therefore, I learned several tricks for dining out more successfully.
First: Always get a table large enough not only for your family but for your ASD child to sit across from you and next to the other parent but not across from or next to his sibling if the relational times are bad. I always ask for a table for six even though we are five. If I asked for five, they would always seat us at a four-top with a chair on the end. Well, that just set us up for a big disaster. I remember once being at a lodge that only had four-tops (thus five with a chair) or eight-tops. I ultimately insisted on an eight-top, but they wanted to argue with me that this larger table was for larger parties. I had to explain exactly what happened when my three children were placed in tight quarters. With detailed explanation, they accommodated us.
Matthew’s movements are also always broad stroked, somewhat like a bull in a china shop. His judgment for placement of things on the table or for reaching over full glasses of water with coat sleeves is poor. He might pick up the salt and think it is funny to shake it at his brother. So, as long as I can get him seated in such a way that his feet will not touch his siblings’ feet and they do not have direct eye contact without turning their heads, I can reduce conflict.
Second: Determine your ASD child’s menu choice before going into the restaurant. I have learned to ask Matthew what he wants to eat before we enter a restaurant. He struggles greatly with his processing, so giving him a menu filled with options is not a good choice. Identifying to him three things and asking which one of the three he wants allows this decision to be easier for him and causes us all much less stress.
Third: Restaurant choice is key. Loud and casual restaurants are also always a must for success. If conflict or arguments do occur, they are not quiet. “Reserved” is not a word that will ever describe the way our children behave together when out in public or at home. Should conflicts begin, I also have found that removing one of the children as soon as possible assists in controlling the escalation that occurs.
When Matthew was younger, I would place a mirror in front of him at the table so that he could see how his habits impacted his presentation at the table. He never liked this as he was honestly disgusted with seeing his food. This allowed him to see what others were seeing and ended up being a constructive tool. Ultimately, while he has improved his skills, the reality is that he will always struggle with remembering to wipe or close his mouth, so we have better success if we strategically place our other two children such that direct visual contact is not easy.
In closing, I hope you find these tips and techniques useful and that they lead you to happy family travels and dining. I am always strategizing on how to decrease our stress as a family, and because of my architectural training, I tend to change my environment and the position of my children to accomplish a more successful situation. I realize now that with my son being 18, I have learned incredible lessons over the many years that have gone so quickly. I look forward to sharing more of these strategies for other environments like home, work, school, shopping, outdoor play, and more.