When my son was a baby, I didn’t want to say “autism” out loud. That’s not just a figure of speech. It’s literal. The word itself, in my brain, would be enough to set off a universal chain of events that would almost definitely end with him having autism.
Of course, it doesn’t work for the words lottery, jackpot, true love, or fame. For some reason, though, we convince ourselves it is a definite thing when it comes to words that we fear. Well, I can tell you that it doesn’t work for autism either. Know how I know?
Because I didn’t say it out loud and it happened anyway.
Today, autism is a part of my son’s life and, through him, the lives of our family. It can have difficult moments, but it’s not a dire situation or a terrible event. Even though he might be seen as having “severe autism” with challenges on the horizon for the rest of his life, it’s still not a massive blow to our family. It’s just a part of life in my home.
You can chalk that up to the slow process of coming to grips with it. As a parent, special needs of any kind don’t hit you all at once. They emerge through missed milestones and delayed achievements. It’s a long-running game of “did he talk yet?” It’s a daily ritual of studying your child and looking for anything that you might consider “a warning.”
Then, it becomes a game of talking yourself out of those warnings. Kid not talking at two? He’ll talk at three. Three? Wait until four. No eye contact? Tired. Inappropriate playing of toys? He’s creative. Unsteady on his feet? He just needs to focus. You name it, I second-guessed it.
Deep down, though, I feel like I knew it for a while. Lucas was delayed right away, and the fear set in for me long before anyone else expressed it. Things that had come easy for his three-year-old sister were a struggle for him right from the start.
Tummy Time was my first indication. This baby activity, meant to teach your infant to lift his or her head from the ground, is supposed to be cute and productive. When my daughter did it, she would do tiny infant push-ups and let out these heart-melting baby sounds that indicated she was trying. I have a million videos of her doing it.
My son? Not so much. His Tummy Time was torture for us both and there is far less footage to document it. He would often end up with his face pressed against the ground and I’d have to physically move it so he didn’t smother himself. I watched in silent horror as he spent months and months trying to lift his head. If I’m being honest, I don’t remember when he ever did because, by the time he got there, my brain was in a haze.
While I don’t know when he did certain things, I know when he didn’t do them. His first birthday is the one day that I can remember best. It was then that all of my self-delusion began to evaporate and a year-long train of concern really kicked in. This was the first time that I could remember a specific event that his sister had gone through and what she could do at that age. I wasn’t guessing at milestones, but rather looking back on her first birthday. I knew what she did by the time her party rolled around. I know what he didn’t.
Lucas wasn’t properly sitting up at one. That was an issue. To get him to balance for pictures, I had to prop him up with all sorts of pillows like he was a shining jewel on display. He was happy, adorable, and smiling, but his body was unable to steady and he wasn’t even attempting to make sure he didn’t wobble over. No one was crying or pointing it out. Rather, he was seen as cute by those around us. I thought he was cute too, but I secretly worried about him so much.
As he started to get in-home services, we began to realize the gravity of his situation. Each new therapist had a reason we should bring in another one. Words never came. Physical movement was delayed. Receptive language was sparse. There were a lot of things that we could no longer sweep under the rug.
For me, the big indicator that he wasn’t just facing delays happened at the California Pizza Kitchen. Looking back, it wasn’t a major thing, but it was the final thing.
Lucas was sitting in his highchair, waiting for food. Just shy of two, he didn’t color or play with toys. He just kind of hung out. I watched as he started rocking in his seat. As he did, he’d bang his chest into the table in front of him pretty hard. He didn’t seem upset by it, but rather happy. I had seen him do similar things with the sliding glass doors in our living room. When someone pointed out that it was cute. I said that I was worried something was wrong. I said those words. I said them out loud.
What followed was a pretty wild ride at C.P.K. with questions, discussions, and raised voices around a table of people. It was the hardest meal I ever had to endure but also the most important.
The bottom line is that it didn’t take one thing to make me want to get my son tested. It was a lot of things. It was a buildup of worry over the course of two years but also the parental pull to find out what I can do for my child to make his life better. Simply not saying “autism” out loud wasn’t enough. I had to put him first. So, I did.
I have been putting him first since that day. We’ve had trials, tribulations, crushing failures, and incredible victories. Like any child, Lucas has grown in so many wonderful ways. Now, when I watch him, though, it’s not out of silent worry. It’s from a place of understanding and the knowledge that I am giving him the best tools to succeed.
That’s what a parent is supposed to do. Never fear learning who your child is. You’ll find out eventually anyway. Find out as early as you can and you’ll be able to help them navigate the world as they see it. After all, we’re parents. That’s what we’re supposed to do.