Our son Frankie will be 15 in May. Not a day goes by without my thinking about his future. The discussion over the past month has been whether he will go to our public high school or not next fall. He is absolutely sure that the time is right for him to "move on." Yesterday, while we were cleaning the chicken coop (birds are his thing), he told me, in his own peculiar sounding voice, "I know I have autism. I know I am different. I am okay with that." When I expressed my concerns about his not having the support that he has now at his current school (a specialized program for teenagers with autism) he told me, "You are worrying too much. You need to let it go."
I had to smile. How many times have I told Frankie "You need to let it go"?
I suppose it's difficult for any parent to imagine a child all grown up and taking care of him or herself. For those of us with children on the spectrum - and even though we worry about it every day - actually imagining a kid like Frankie all grown up and taking care of himself and being "okay with his autism" is an almost impossible leap of imagination. But we do know that our children will grow up, and we know each of them will live their lives as independently as they are capable with the tools we have given them.
Here's another thing Frankie told me: "Don't worry, you have taught me how to do this. You have taught me everything." Like Adam in this episode, I tend to get so wrapped up in the day-to-day struggles with Frankie that I forget how much he is learning and how much his (and our) hard work are paying off. I often don't see that we are making real progress in helping him grow into an independent adult with his own life, his own interests, and his own difficulties and quirks - just like Andy the Bug Man.
What I have seen with Frankie's typical friendships is the same sort of understanding and support that Zeek gives Andy. Frankie's friends are all ready to jump in and help. They "have his back." Because they understand Frankie has autism and that he's "different," they do what any good friends would do: they help him out, and do what they can to structure the environment to give him room to be himself in all of his wonderful differentness.
For years I have counseled parents, teachers, patients and all sorts of social groups on how to look beyond any disabilities and see the abilities. I have advocated for inclusion. I have challenged us all to work to move beyond acceptance and toward embracing our children's differences. I have believed (along with Jennie Weiss Block, author of "Copious Hosting: A Theology of Access for People with Disabilities") that welcoming and embracing people with disabilities brings a theology of liberation - not only to the disabled but to those of us who are "abled" as well. We are all blessed. Now I find myself on the horns of a dilemma. Do I opt for safety, security, nurturing and growth in a very secure environment for the next few years before "allowing" Frankie the path to more complete inclusion... or do I walk with him now into the messiness of life in the "real world" and all the growth, pain and joy that this choice entails? Do I "allow" him to liberate himself while bringing liberation to those around him? Do I restrict his willingness to give himself or the willingness of others to give to him?
In reality, the choice may not be quite so stark, but it sure feels that way. This episode has been a great reminder of not only how our children's passions can give them a life of working and loving, but also of how painful it can be for parents to "let go" and "allow" their children to risk the pain, but also experience the joy of living their own life.
Written by Roy Q. Sanders, M.D.