My son has always been a busy bee. In fact, he stopped at Wal-mart for some shopping and his daddy’s workplace for a meet and greet on his way home from the hospital. He was attending softball games before he was 5 days old and he traveled across the Florida Panhandle for Easter with his Granny before he was even 2 weeks old. By his first birthday, he had already had 4 different addresses. No, he isn’t a homebody by any stretch of the imagination.
Of course, with the onset of his autistic traits, life in the community became a little more complicated. It wasn’t too difficult at first because unless someone really knew what they were looking for, he seemed like any other slightly spoiled and loud two years old. Observant people without the knowledge of ASD may have noticed that Junior stared into space, flaps his hands and shook his head wildly at times, and didn’t talk…but most people weren’t around him long enough to pick up on his eccentricities. However, as he grew older yet maintained his toddler-like ways, more and more people noticed and more than a few commented, “He ain’t right.”
At no point in Junior’s life have we thought that it would be wise to keep him at home and out of view or the way of the public. We never slowed down. We never stopped coming up with vacation ideas or local activities. After all, if you really pay attention to other people it is obvious that our communities are filled with diverse populations. There are people without Autism that are rude, crude, obnoxious, and generally unpleasant. Any avid shopper can recall at least one time when they have witnessed other non-developmentally disabled adults throwing their own versions of temper tantrums at long lines, empty shelves, pricing errors, and other retail mishaps. There are other children, some the same age as my son throwing their own fits over a wanted toy or gadget when mom & dad refuse. So why should we think twice about taking Junior anywhere that families are generally welcomed?
At the same time, we do take other people into consideration. We don’t set out to ruin anyone’s pleasant community outing by subjecting them to one of Junior’s meltdowns. At the same time, our main concern isn’t the general public. Our main concern is Junior and we want him to enjoy his vacations, road trips, family visits, and community outings. Therefore, we do have some guidelines we follow.
If Junior is having an off day, we keep him at home. We don’t take him out and about if he is sick, tired, or hungry so as to avoid potential meltdowns and public scrutiny. Prevention is our motto. If we are out and he has an unexpected meltdown, we leave. When dining out, we eat just before or well after the peak hours of restaurants. When going to movies, we pick something that we think will hold Junior’s interest. We also wait until the movie is about to leave circulation so that we are usually one of only 2 or 3 other families in the whole theater. Even then, we sit as far away from everyone as possible. If/when Junior starts to get antsy or his verbal stimming gets loud, we take him for a little walk and come back when he settles down. We don’t visit amusement parks during peak season. We try to shop either early in the day or later in the evening to avoid large crowds. We even ask his doctors to not double book him and to call us if they are falling more than 30 minutes behind so that Junior won’t get anxious and upset and disturb other patients who are also upset with having to wait so long.
This careful dance with the community takes a lot of practice and a great deal of careful planning. Even so, we still encounter negativity on a fairly regular basis simply because our child doesn’t fit the ticky tacky mold of society. The thing is…while the attitudes of others may upset us temporarily and can even bring me to tears, we never let any of it discourage us from giving our son a life outside of his home.
If you have a strong-willed child or one with a developmental disability, what to do you do to make navigating the world easier for your family and the public?