I was thinking about how to honor my dad’s memory today, four years after his death. And it finally occurred to me that the best way to remember him is to write. So here I am, after a long hiatus. Hello.
My dad was a writer. He loved words. He loved puns and jokes and games. He was clever and honored cleverness. And I think my decision to go back to school to pursue my own writing was a huge relief to him. It was something he could understand. I was never the kind of visual artist that he could appreciate. I made a lot of abstract “outsider” art, which means most of it wasn’t pretty. And that never clicked with him. And certainly, my five years studying Kabbalistic Healing with a Jew from Brooklyn was beyond his ken. But writing he could get. He got it, and he supported my dream to become a writer, even though he never really supported his own.
Dad was born into a military family. His father was a four-star general in the Air Force. Both of his brothers were career military. He was proud of them and, I think, ashamed of himself. He could never have been in the active-duty military, because he almost died of Polio when he was four years old. He was tenderhearted and wanted to please his parents. I’m not sure his tenderness was encouraged. He certainly didn’t encourage my sensitive side, I think mostly because it reminded him of his own, which he tried to hide. I’m only thankful that I was a girl and therefore more easily “allowed” to have strong feelings.
But he was sensitive, and intuitive. He could read people pretty well. I have that same gift. And so does my son. Jack is four years old now. Almost four-and-a-half, though he doesn’t really keep track of those things. He’s about the same age my dad was when he contracted Polio. I cannot imagine what my grandparents went through, knowing their boy may die, then that he may never walk again. How heartbreaking and exhausting that whole ordeal must have been for them — and him.
Jack doesn’t have Polio. He has autism. Some people think that autism is caused by vaccines. I have heard and read enough evidence to refute that claim, but in a recent conversation, I told one woman that in the worst case, if that were true, I would still rather Jack have autism than Polio. Autism won’t kill him. But that doesn’t mean that it isn’t also a very heartbreaking and exhausting process for both him and us, his parents, to live in a world that doesn’t understand autism. Even the experts don’t really understand it. We still don’t know what causes it, and the symptoms can vary greatly from kid to kid, both in type of symptom and severity. There’s recent research indicating that a particular protein is involved, and if that protein were isolated and treated, it could help alleviate not just the symptoms of autism, but the underlying cause. I have mixed feelings about this, since I would never want a drug to change my sweet boy (and side-effects of any drug can be frightening). But if something could relieve the crowded sensory input in his brain, it could make him a much happier boy.
But the truth is, he IS a happy boy. He has been since before he was born. When friends complained of crying during their pregnancies, I was laughing. I even laughed during labor. (BETWEEN contractions, not during.) And another recent New York Times article featured a young man who has lost his autism diagnosis but who says that he could feel joy much more profoundly when he was “allowed” to wave his arms and jump up and down, symptoms some therapists (and cruel siblings) discouraged. I can see the distress it causes Jack in new situations, especially if there’s a lot of ambient noise. He gets easily distracted by lights and fans (*especially* fans – his favorite thing). Would a treatment make it easier for him to focus and become less anxious? Maybe.
But it might also take away that sweet vulnerability that I so love about him. He is sensitive. Like me and my dad. Like his own dad and Brian’s dad, both of whom are likely on the same spectrum Jack is on. Just as blind people tend to have more acute hearing, I feel that Jack’s autism, while limiting him in some areas, actually allows him to see more, to sense more, than the average kid. Maybe it wouldn’t be such a good thing to take that away. Maybe it’s time for our family to honor this sweet, tenderhearted sensitivity that lives in my boy.
I think on the other side of death, his ego gone and his heart wide open, my dad would definitely understand that.