Life can be challenging when you’re parenting a child who has special needs; sometimes, for me, that challenge can blur my perspective and lead me into an “us vs. them” state of mind. What I mean is—I’ll begin to categorize the world into those people who easily understand and relate to my experience—my fellow warrior parents, my son George’s best therapist, the pre-school teacher who still emails me regularly to see how George is doing. “Them,” depending on the day, might include the new teacher who writes less than detailed comments into my son’s communication book, the babysitter who doesn’t follow my instructions and the people staring at us in the movie theatre while my son is happily bouncing up and down in his chair.
It might be temporarily satisfying to keep “them” at a distance and surround myself with people who meet me with compassion and understanding, but the problem with doing so is that I limit my circle and miss out on the opportunity for honest dialogue with the folks who seem to not get my experience. I also end up making a lot of assumptions about people with this kind of us and them thinking—it might turn out that the babysitter really didn’t understand my instructions about what to eat for snack even though I thought it was clear or that the people turning around to stare at us also have a close cousin who has autism and George reminds them of him.
I am working on noticing when I get into an “us vs. them” state of mind so that I can stop myself and see how I can make the moment of separation into one of dialogue instead. Just recently, I had an experience that has deeply encouraged me to become even more proactive about expressing what my family needs, rather than being reactively resentful when an experience is difficult for us.
In a few weeks, my family is flying to Michigan for a dear friend’s daughter’s Bat Mitzvah. The last time that we all flew was four years ago, when George was much smaller and we were able to get through the whole experience by showing him nonstop videos of “The Wiggles” on my husband’s laptop. This time, George is 9 years old and measures 4’6” tall. I thought about how his autism is at first hidden from view and how people might begin to stare at us if he jumps up and down waiting in the security check line or begins to cry if he becomes frustrated. I started thinking about how the other passengers won’t understand our experience and how dreadful the flight might be.
But then I stopped and thought about how much George has grown and how much more able than ever before we are feeling about having a successful flight. I remembered reading about a program in Philadelphia started by Dr. Wendy Ross, a developmental pediatrician, that takes children with autism to the airport for a practice run before flying.
I emailed Dr. Ross who explained that the program wasn’t running before our flight but she immediately put us in touch with people in charge of TSA at our airport and they helped me to arrange a practice run just for George. Last Saturday, I took George and his younger sister June to the airport where we were graciously met by agent Denise , who took us through a practice run at the security check-point and walked us through the airport so that George could look out the windows and see all of the planes. Her understanding and support of our situation was so clear in the way that she talked to George and showed him so many details about the airport. George was calm, receptive and clearly excited to be in the airport. I can’t wait for us to do the real thing at the end of the month!
When we do fly, I know that I will have prepared George as much as possible and I anticipate a relatively easy experience. But I also know that if we go through a rough patch, a moment of confusion or even meltdown, and that if strangers turn and stare at us, that I will try and approach their gaze with an open heart. There may be a source of great love, support and understanding from among the crowd, but I first need to open up to that possibility to discover it.