Since last summer, with the guidance of Alex’s doctors, the dosages of four medications he takes have been reduced, and one has been completely eliminated. While this is a wonderful testimony to the progress he has made, the healing God has provided, and the benefits of behavioral and music therapies, one noticeable side effect has been increased sensory issues, which are common in autism. Most notably, his appetite, which has always been excellent, has decreased because he tells us that he doesn’t like the taste, smell, and texture of some foods. In addition, like many with autism, he is bothered by sound sensitivity now, something he had overcome many years ago. Besides covering his ears, he will often lower the television volume or complain that music is too loud. Consequently, we need to take these sensory issues into consideration when we take him places where sensory overload could be a problem.
Although we tease Alex that he is like the fairy tale character Goldilocks, who keeps looking until she finds what is “just right” for her, Alex isn’t intentionally picky. His heightened senses mean that bath water must be neither too hot nor too cold and volume must be neither too soft nor too loud. Going places this winter caused issues for him not only because he deemed the temperatures too cold, but also because the wind bothered him in how it felt and sounded to him. Trying to get Alex past his issues about leaving the house meant showing him that we understood his concerns and reassuring him that we would make outings as comfortable as possible for him.
One of the first issues we must consider in planning outings with Alex is time. He is especially conscious of time, relying on his watch and daily schedule to keep him calm. If we are going someplace, he needs to know when we are going, how long we will be gone, and what time we’ll be home. Whenever possible, we schedule appointments around the crucial times of his daily routine: mealtimes, bath time, and when his beloved game shows are on television. Thanks to DVR, we can tape any television broadcasts Alex might miss if he goes places, and making sure these shows are available for later viewing is one of Ed’s main responsibilities in this process of getting Alex to leave the house.
In addition, Ed acts as the enthusiastic game show host in convincing Alex to choose to go places. In our own version of Let’s Make a Deal, Ed has figured out all the tricks to get Alex to pick the unknown prize behind door number one. By reassuring Alex that altering his sacred daily routines will be worth the sacrifice, Ed makes him willing to venture out into the world. Because Alex trusts Ed, he usually buys into the persuasive techniques and agrees to the offer of an outing.
On the other hand, my main role is to gather any items Alex may decide he needs while we are gone. In case he gets thirsty or hungry, we bring along a drink in a sports bottle and a snack for him. In case he gets chilled in the summer, we take along a jacket. If his lips feel chapped, I carry lip balm in my purse for him. If mosquitoes are out, I have bug bands, wristbands that repel insects, for him to wear. If it’s too sunny, we have a ball cap for him to wear, and fortunately, the Transitions lenses in his glasses automatically darken like sunglasses. In case his hands get dirty, I carry wet wipes for him to clean them easily. When he was younger, I used to carry a change of clothes, too, in case he spilled something on them. Of course, mothers of young children also travel with all these items; however, one doesn't expect this need to continue when the child is twenty-six years old.
The newest addition to my list of things to bring is a pair of headphones to muffle sounds that bother Alex. While some children with autism always travel with headphones, we have not needed them until recently. Even purchasing those headphones required the “just right” mentality: not too loose and not too tight, not too big and not too small. And, in case he refused to wear them after all those considerations, they were not too expensive, either. After examining numerous pairs, we found the ones we thought were “just right” and were even able to find them in red, Alex’s favorite color, which was another good incentive for him to wear them.
After I have assembled everything Alex might need and Ed has sold him on going, we still have some reassuring to do. We have found that giving Alex too much time to think about things can give him opportunities to fret. Therefore, spontaneity often works better. Once we decide we’re going, we can’t wait too long, or he may change his mind. In addition, we’ve found that we can’t overwhelm him with too many choices: two is usually a good number of options to give him. Otherwise, he will respond with, “What would be good?” That translates to, “I don’t want to make a decision; please stop asking me questions!” After we get in the car, Alex also needs reassurance about the weather, especially if it’s too hot or too cold, or if it’s too windy, or if it might rain, or if there will be thunderstorms. Even though I will tell him that the weather is fine, apparently he doesn’t trust my meteorology knowledge and requires true confirmation from Ed that the weather is fine before we can go on our merry way.
Once we have arrived at our planned destination, we also know that we need an escape plan in case Alex becomes overwhelmed. Ed and I have often joked that we could work with people in the Witness Protection Plan because over the years we have become skilled in helping Alex get out of any public place unnoticed when he has suddenly wanted to leave. To make this easier, we always choose aisle seats in the back, know where exits are located, make sure we know where our car is parked, and look for signs that Alex has had enough. Knowing that anxiety can strike at any time, we always remind Alex that if he needs to leave at any time, we will take him home. (This also explains why we usually choose activities for him that are free or inexpensive.) If we need to make a hasty retreat, we are ready to do so at a moment’s notice.
Fortunately, our planning, experience, and cooperative efforts have paid off this summer. We have been able to take Alex walking on nature preserve trails, shopping at various stores, playing video games at the local family fun park, seeing exhibits at the county fair, and enjoying music at outdoor concerts. Certainly, the opportunity to experience various community outings is important for Alex, and we are pleased that he is willing to overcome his fears and sensory issues to try going different places. The rewards for our careful planning and preparation come when we see Alex smiling and having fun and even, as he did after a concert in the park last week, proclaiming that he liked it “one hundred percent!” Clearly, our efforts were a success, and we are thankful that Alex can enjoy life’s simple pleasures.
“Commit your actions to the Lord, and your plans will succeed.” Proverbs 16:3
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