NOTE: This is the second of a two-part series about autism as it relates to my film Love and Communication. Click here for the last post about ABA therapy in my life and in the film.
So in my last post I talked a lot (it was a long post) about the different types of therapies as they relate to our experience and the experience of the film. Today, I’m going to talk (less, I swear!) about how time has impacted my take on all this.
Last week I did a podcast interview with a nationally recognized autism expert named Mary Barbera. (Future plugs to come when it’s live). Mary is in the trenches, helping parents who are just now getting an autism diagnosis.
Some things have changed but a lot has stayed the same. There are more high quality resources online. But there are still an overwhelming number of choices. And parents get confused about where to turn, which can sometimes lead to bad decisions.
The Scrum of the New Diagnosis
When I first wrote the play version of Love and Communication, all of this was raw and new. I wrote out the experiences of a fictional family going through some of the stressors we went through (and handling them very differently).
12 years have passed and I look at the time of diagnosis differently now. We felt this intense pressure to get him services, and guilt when we weren’t able to get those services quickly enough.
When your child is three years old and has an autism diagnosis you are hoping he or she is one that will respond quickly to therapy and progress towards mainstream education and a more independent life-path. And you will do just about anything to increase the odds of making that happen.
In those first few years you alternate between the desperate struggle for services and then wondering how/why did this happen to us and our child. For parents with autism, the “why/how us” is almost always unknowable. And that can be difficult to accept. I have little or no patience with the argument that vaccines cause autism. But I understand how parents can find themselves down that rabbit hole. Parents are in a pretty fragile emotional state, and if someone is offering a clear explanation, where there’s a cause/villain, and potentially a biomedical solution, I can understand being drawn to that.
My Son Isn’t a Puzzle Piece
Autism can feel like a kind of curse because there is no apparent reason. With Down’s Syndrome, doctors can speak with some level of confidence about how it happened. That doesn’t exist with autism. This is why we’re left with that goddamn puzzle piece as our logo. I say this not to diss whoever came up with it (it’s fine). But it bothers me because it makes the top story this issue of the mystery of how this has happened; and offers this tantalizing concept that someday we’re going to figure out the puzzle. In my darker moments I feel like that symbol makes it an attractive way to raise money for autism research. We just need to find the other puzzle pieces.
But increasingly, when it comes to autism and funding I am less focused on “awareness” and even research (although it’s critical and should be supported), and more focused on services for people with autism now. Notice I say people and not kids.
Potential vs. Acceptance
Jimmy is 17 years old now and when we think about his future, it is less a focus on potential to live independently, but to ensure that he is happy and well cared for as we get old and after we die. When you have a child with severe autism nearing adulthood (and I’m sure many other serious conditions), you have a new incentive to try avoid thinking about your own mortality. But at a certain point you need to. And these days it’s hard to have faith in the government providing protections and services to the vulnerable.
Love and Communication is about parents who want their son’s future to be open and full of possibility. There is this potential that they feel must be there in this beautiful little boy, and they need to figure out how to unlock it. They want it so badly they almost lose sight of the importance of his being supported by a united family. That is something Jimmy has. And as I get older that’s what I appreciate more and more. I am lucky and proud to be a part of this family, that supports and loves Jimmy for who he is (who he is, if you don’t know him, is a very gentle, innocent and sweet-natured little boy inside a body that is starting to tower over his father).
We’ll always push him to learn more, to gain skills and build on them. We keep pushing for services we think can help him. And we continue to be surprised when he does or says something we didn’t expect. But we aren’t trying to fix him any more.
In the film, the mom confides to someone that she feels sometimes that her husband treats her son like a broken washing machine that needs the right part. I hope I haven’t treated Jimmy that way. Through this process of making the film we’ve looked back at pictures and video of him as that enigmatic (and crazy beautiful) three year old. And I worry that in those early days in the struggle for services I wasn’t really appreciating him as much as I should have.
Parents are always trying to shape our kids and push them to grow, while not forgetting to appreciate and support them for who they are. I think it might be sort of impossible. But you try anyway. With typical kids you feel like their childhood will have an end-point, and then maybe you’ll have this new job as sideline cheerleader for their adulthood. With Jimmy, we’ll continue to be more like head coaches, as long as we can do the job. But we’ll be the supportive, sensitive coaches who give hugs (when tolerated). We’re not in it to win it, after all. This isn’t that kind of game.