This all-too-short essay from a 14-year-old who had autism is practically overwhelming for me to read. I will freely confess that I still believe my son will be able to write something like this some day, at the same time that I freely admit that he might never write a sentence that he isn’t taught.
Maybe I’m naive, or choosing willful blindness over facing facts, but I know that today, at least, keeping the two extremes in balance is important. Hope with realism; fighting with accepting; effort without guilt. There’s a fine line here emotionally, and every parent has to find his or her own path forward. For us, we need to be able to say that we can accept a low-functioning future so that we’re not devastated if it comes to pass; we need to be able to say that we’re still aiming high because anything less seems like a betrayal of our son today, with his unknown potential; we need to be able to say that we’re helping him become himself, whoever that turns out to be. I think that all caring parents fear that they’re potentially failing their kids, whether on the spectrum or not. The stakes seem just as high to every parent, even if we look at others and think about how much they have taken for granted. We try hard to look at the families around us and recognize that each of them has a similar view.
Early on after Dylan’s diagnosis, I came up with four “facts” that helped me accept, and then move past, his diagnosis:
- He’s not going to die
- He’s not in pain
- He knows we love him
- We know he loves us
It’s hard for me to write these things here because I know that there are so many parents, on the spectrum and off, whose worlds don’t match up with mine. We know parents with children who’ve died, who have likely terminal diseases, who have kids who are withdrawn, who have kids who don’t like to be hugged.
All of these parents have found their own way to accept their lives.
How does that mixed-up jumble of feelings, worries, hopes, and fears co-exist with a story like Jason’s? I don’t know, but I’m certainly glad for him and for his parents.
We’ve added a fifth item, a goal, to our list of facts: our goal for Dylan, one that would allow us to feel like we’d reached some level of success even if our efforts otherwise fall short, is that he not be forced to rely on the kindness of strangers. There are many, many expressions of the fear of dying among parents of children on the spectrum: “what will he do without us?” is a question that no one wants to ask, let alone answer. Talking to someone today, I mentioned this goal and said how we feel like we’ve learned to think about our son as a person and not just as a future soldier, lawyer, writer, or scientist. We’ve forced ourselves to think about what our real measure of happiness is, what would bring his life meaning. Again, maybe it’s just rationalization because we’re not spending a lot of time thinking about where he might go to college, but I think there’s more to it than that — we are thinking in the same way about our younger NT [neurotypical] son, too. I’m less concerned about what his future holds in terms of things beyond his happiness and self-determination. I guess I’ve decided that if happiness is the right standard for one, it’s probably really the right standard for the other.