Things are different when your kids are little. The people they are and are going to be aren’t viewed through the same lenses they are when the future finally arrives. For my son, non-verbal with autism, the early days of acceptance felt like the finish line. They felt like enlightenment.
After all, the initial shock of seeing his delays play out before me was something I had to come to grips with. Accepting his lack of speech and over-excited mannerisms was tough. Sending him to an autism-friendly preschool that left tissue boxes on the tables at orientation was tougher. Fielding questions from friends, stares from family, and paranoia in public was the toughest.
I got through it, though. The way I got through was thanks to his fantastic personality and the love that we shared. I accepted who he was and who I knew he was growing into. While I felt guilt for his struggles and worry for his challenges, I knew we’d be OK. It felt as though we had turned a corner and, by five, we were off to the races. My baby was grown. Normalcy, in any form, is normalcy if it’s part of your normal life.
We were cool like little Fonzies. All dressed in blue and doing autism walks. My kid was great. What was the worry all about? We’re good.
Then, one day, I was watching a video online about autism and saw a father, with a son in his twenties. The man, non-verbal like Lucas, had a mustache and displayed all the mannerisms that my son had. I watched as the dad, attempting to talk about their life together, tried to speak while his boy bounced around, clapped, and pressed his face into his father’s. It was like watching all the things that my own little boy did, only done by a grown man.
I flashed into the future. And I freaked out.
I should clarify something. I freaked out in my head. Most of my freak outs, as it relates to Lucas and my life in general, happen in my head. It’s a silent concern that eats me up from the inside out. What is happening? What are we dealing with? What will he become? That was the worry. This thing that I had accepted and embraced was suddenly new again. The haze that I went through when he was two had returned. Only now, it wasn’t something that could be alleviated by simply looking at who he had grown into. This was the ghost of our life yet to come.
The guilt about this feeling was compounded much more than the original guilt I felt upon his diagnosis. I hated myself for seeing this man’s son as the same cautionary tale that I worried others might see my own child as for their own lives. It was everything I stood against. I was angry at myself for being so judgmental as to not embrace everyone’s circumstances the way I demanded others accept mine. I was the ultimate hypocrite.
Another difference was that my original worries about Lucas’s autism diagnosis were based on a future that I didn’t know yet. I could write them off as fear of the unknown. When they said he might never speak, I pictured a foggy image of tomorrow. My anxiety was unspecified. It just took the knowledge that time would naturally bring to put that worry away.
This wasn’t that. This was a worry of a future that, while not exact, was sure to happen in some ways. This boy on YouTube was the same as my boy when I was watching it. While I know that there will be certain things about him that wouldn’t be the same, I know that many of his behaviors will. I wasn’t looking into a mirror, but it was definitely a window. This is who my boy could and probably would become.
This month, Lucas turns eleven years old. He’s not the mustache man yet, but he’s getting there. People remark about his height and other kids, his same age, are doing things that would be considered “so grown up.” He still claps. He still hugs. He still acts in many of the same ways I feared he would at this age when he was a baby. Time hasn’t erased the possibility that he might remain this way into adulthood. It’s still a very real thing.
There’s a stupid old Brady Bunch saying that is typically used as comedic fodder – “Wherever you go, there you are.”
It’s repeated as a joke to mock useless advice, but it’s true. Where we are today is the fear I might have had yesterday. Wherever we are tomorrow is the fear I have today. Yet, when I’m there and in that moment, everything is fine. The past is over. The future is scary. The present is always just there.
My kid is awesome. I spend pages and pages telling people that. The worries I used to have didn’t come to fruition, even though many of the “nightmare” scenarios may have played out. That’s because they’re not nightmares. They’re our normal. They’re our lives. I never factored in the love we’d share or the good times. Instead, I saw our future in snapshots. Dreading still images of unwritten events left to play out, I couldn’t imagine what it would be like to live them.
Now that I have, I know they are wonderful. Do I want the best for both of my children – non-verbal and neurotypical? Sure. Is being a special needs parent a dire death sentence that makes me dread waking up? Far from it. It’s my life. He’s my life. He’s amazing.
That’s how I know tomorrow will be wonderful too. It will be wonderful because my not-so-little guy is in it. Mustache or not, my son is my son and we’ll both grow older together. He may be a man, but like his sister when she reaches adulthood, he’ll always be my baby.
Wherever you go, there you are. I can’t wait to get there.