When a frail and elderly person gets on the bus, or enters a crowded room, do you give up your seat? If someone enters in a wheel chair, do you make room for them? What about for the young, ambulatory person with special needs?
Our son Akiva, who has Down Syndrome, loves to take buses; he loves to see performances; he loves to go to synagogue. He isn't very good at standing and he needs to claim his seat when he gets to a new place right away. Arriving with him in a crowded space is one of the most stressful things that we, as his parents, experience on a daily basis. We know that as soon as he gets there, he is 100% focused on where he is going to sit, and he feels very anxious if it isn't immediately apparent to him where he will find his "place." As his caregivers and "navigators," we feel that anxiety build acutely as we approach with him.
When we do finally arrive with him, the stress reaches a peak. We say to ourselves: I just hope that someone will see us walking in, see Akiva's excitement and inability to control himself, and quickly vacate the nearest few seats so we can begin to get him settled and relaxed. We are almost always disappointed, as we wrestle him to keep him on course, climbing over legs and seats, working hard to keep him from touching everyone he passes, stressing about the loud and not so articulate noises he is making. Even in the place we regularly go to synagogue – a small and friendly community, where most people are kind and understanding to us – we find that people don't realize that the one thing we need most, the one supreme kindness they can show to us, would be to simply clear out the seats nearest the entrance when they hear us approach.
We try not to be resentful of this. Though it may be clear to us, people just don't realize how important it is to us and to Akiva, to have a place to sit as soon as possible upon arrival. We have no way of knowing how we would react under analogous circumstances – we have trouble remembering a time when we weren't tuned to the needs of Akiva. Yet, we know, in fairness to us, and to our peers, who genuinely want to "do good by us," that we have to find a way to get the message across. Parents of children with special needs hate to feel constantly needy themselves; we want people to anticipate our needs, so that something seemingly so simple as the entry into a crowded room can be accomplished smoothly, without feeling we are the focus of everyone's attention. It is a small, if not obvious, kindness to show us, and can make a huge difference in our ability to cope on a given day.
By Ira Skop