The way my non-verbal son sees me makes me feel like Superman. I am his go-to guy for nearly everything. No matter the issue, here he comes.
He’s lucky because often I know exactly how to fix the problem. He wants orange juice? I know where that lives. I bought it. Pirate Booty? In the cabinet. A bath? Here you go. A ride to school? Back seat of the jeep, little man. Buckle up.
Sometimes, the issues can get a bit more advanced. Wi-fi problems, missing cups, and broken tablets all fall at my feet too. Still, I take care of them as best I can. I’ve got his back and he knows it.
Those things are simple. Daddy will take care of it, pal. There’s nothing around this house that I can’t fix. The lights are still on. The electricity still works. The water still runs. Short term, any issues he might face are all good.
When it’s the long-term stuff, that can be a different story.
Lucas is twelve years old and has what some would call “severe autism”. His disabilities will likely last a lifetime and require assistance into adulthood. It is an issue I have come to grips with and a responsibility that I place firmly on my shoulders.
Figuring things out isn’t a simple proposition and the consequences of screwing up can be major. Helping my boy along his journey is daunting and there are certain realities that I need to face. Yet, it’s the choices I make for myself that serve as a foreboding example of how I might handle his.
I recognize my errors in judgment, learn from them, and work on myself in order to correct them. That’s how I sometimes deal with these red flag pitfall issues.
Of course, I also tend to open the door, invite them back in, and offer to make them dinner.
I’ve made mistakes that have lasted for years and dire miscalculations that reshaped my world in the most twisted of ways. In the wake of these missteps, major life lessons flash before me like neon lights and, as I’m reading them, I’m already making plans to do the exact opposite. There are repeating patterns and endless conversations that I’ve had a million times before with the same people, both literally and figuratively. They sit across from me and sell the same familiar nonsense I swore I overcame years ago. Yet, here I am, actively doing harm to myself, while knowing full well that I’m doing harm to myself.
And this is the person that my son is relying on to decide the rest of his life? Oh, kid…
If he had language, what would he say? Would he be like, “I’m expected to trust this guy to make decisions about my life? Is anyone seeing this? Can I get someone else?”
Fortunately, he doesn’t ask that and, not to toot my own parental horn, he wouldn’t if he could. The reason why is that I have made good decisions for him throughout his life. I haven’t been the cause of any catastrophes or terrible outcomes. By and large, I’ve always done right by my boy even when I haven’t always done right by me.
This isn’t just an autism advocacy thing, though. It’s a parenting thing. I think most people can relate to that fear of fallibility. Aware of my personal blunders, I go into the choices I make for my son with more focus than I give to any of my own. My life might be surrounded by ghosts of errors I continue to make, but his life is a calculated set of decisions with his best interests in mind.
My children come first. Everyone knows it. They’re my gimmick. If I was an action figure, the accessories I would come with would be my son’s toys, my daughter’s schedule, and two smaller figures representing them. Everything I do, I do for them. Even in my most unsure moments, that’s one thing that I’ve never questioned.
Still, it does feel concerning to stand at a tour for my son’s future school and making decisions with firm resolve, when I know that I’ve made incredibly dumb choices for myself. The lapses in judgment that I beat myself up over didn’t all happen decades ago. Some of them happened last Saturday.
At the end of the day, it’s about little leaps of faith. I put these kids above myself and, in times of doubt, I know my visceral reaction can often be right…for them.
Me? Maybe not so much, but I’m a work in progress, an unfinished masterpiece, a constant struggle, or whatever else we pin to our profiles with a picture of the beach. I might be discovering my best self as it relates to being a person, but as a parent, I’m already there. Even though I worry I might fail them, I know I won’t. It’s simply not an option.
FROM AUTISM AWARENESS TO AUTISM ACCEPTANCE TO AUTISM APPRECIATION
Watch: James Guttman speaks to the Massapequa SEPTA about Autism Awareness, Autism Acceptance, and Autism Appreciation.
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