Everyone told me to be hopeful when my son was first diagnosed with autism. It was all about seeing the bright spots, hoping for the best, and knowing that “anything is possible.” Those were the words that were repeated and the sentiments echoed by every professional who crossed my doorstep.
Would he sit up? Would he walk? Would he talk? Would he be able to live a “normal” life? The response was a smile, a hand on the shoulder, and a reassuring “anything is possible.”
Sometimes they would throw in a short, yet suspect, anecdote about a former child they worked with from long ago by who struggled just like my boy. Years later, they’d say, that child went on to become a king or a physist or something. Listen to the mustn’ts. But listen close to me. Anything can happen, child. Anything can be.
The years went by in our own lives and things both happened and didn’t. Did he sit up? Yeah. Did he walk? Sure. Did he talk? No. Will he live the idyllic “normal” life that Audrey in Little Shop of Horrors sang of? The jury is still out on that one too.
The jury, though, has been out for a while. My son turns eleven this month and many of those possible anythings can start to feel like improbable Hail Marys.
This change in cabin pressure is no different than what happened when he was little. It’s a subject I’ve written about and one that every special needs parent needs to accept. Lucas was just a few years old when the idea of a communication device was introduced. Everything inside me said not to do it. It felt like surrender.
Was it, though? Was I giving up? By introducing an alternative way to communicate, was I accepting that he might never communicate the way I do? By putting words on a screen for him to press, do I eliminate the need to form those words with his voice? Was this a mistake?
It wasn’t. My boy wasn’t even trying to make words and, had it not been for that device, he would have lived in sad silence. His wants would go unmet. His needs would go half filled. He would live a frustrated life and it would be my fault for denying him the help he so desperately and obviously needed.
I feel as though I am at that place again.
That’s a painful statement to make, but as my son grows older, many of his missed milestones still seem very far off. I worry about who he will become and the life he has ahead of him. While I want to give him the same optimism that I give his sister, I also don’t want my optimism to prevent him from getting on the right path for his inevitable journey. I don’t want to lead him in a direction chosen by hope rather than acceptance.
At some point, optimism clashes with reality. The phrases we use to talk about this sense of parental foresight begins to change. The internal monologue words morph from hopeful to miracle to delusional. It’s not that ambitions and dreams for my boy disappear. They always remain. However, they need to take a backseat to the actuality before us.
I want my son to be able to spell his name and set a dinner table. Those are big deals, in the big picture of life. There are, however, much bigger things to spell out for his future and more important tables to set. I don’t want to deny him the help he desperately needs just because I desperately want him to reach heights that might be unreachable.
Let me be perfectly clear. I hate writing this. This isn’t a narrative that brings me joy. It’s one that hurts to put into words, but it is a prime example of the important role that I play in my son’s life. I’m his dad. Sometimes I have to do things that hurt me in order to help him. I feel like there is no better example than this moment on this day.
Am I still hopeful? Sure. Can anything still happen? Absolutely. But should I put all my eggs in that one basket and watch as he misses out on learning some of life’s most important skills in the meantime? Do I keep pushing him to go down the steepest hills while wearing training skis? If so, why? Am I doing it for him and his needs or am I doing it for me and my wants?
The most common theme in all my discussions about Lucas is that I love him no matter what. This is a no-matter-what time in his life. I have to support him, even if it means accepting the areas where he needs support the most.
I’m still hopeful for tomorrow. But when tomorrow comes, he has to be ready for it. Make no mistake, tomorrow will come. So will the day after. When those days arrive, they won’t be how I wish them to be. They will be how they are. If he and I haven’t been prepared for them, then we will have failed. Sometimes you need to accept downfalls in order to ready yourself for success.