My Biggest Fear Wasn’t That My Son Would Never Talk

I am going to start this off with a statement that many people will not agree with, but if you allow me to explain, I think I can change your mind.

When my nonverbal son was first diagnosed with autism, my biggest fear wasn’t that he would never talk.

I know. I know. It sounds insane and, if I were to read that in 2012, I’d think the author was a fool. A handsome fool, but a fool nonetheless.

The truth is that, at the time, I thought I was afraid of that. It was all I ever asked for. Who did I ask? Everyone. Teachers, professionals, doctors, and God. They all heard my voice calling out.

To me, “nonverbal” was the scariest phrase there ever could be. However, it wasn’t for the reasons I thought on the surface.

It was never about words. I know this because I’ve seen people with words who don’t know how to use them. Autistic or not, words are only as good as the intent behind them. Repeating a phrase without any idea what it means is worse than not saying a word.

At 15 years old, Lucas has no words. None. Any idea of what he wants or needs has to either be seen through gestures, heard from his device, or known through intuition.

Having the wrong words in a situation can break the bridge of understanding faster than silence ever could. If Lucas wanted pizza, but didn’t have the word for it, he would go without it far more often. It’s not about what you say. It’s about what you mean.

Granted, this took a while to figure out. It was a lesson that I had to realize through the years.

However, deep down, I always knew that words weren’t my main concern. Even at the time, I knew this. I just didn’t have, well, the words to explain it, whether to others or myself. No. That wasn’t my biggest fear.

My biggest fear was that I was never going to be able to build a relationship with my son.

I’m not just saying that in the “buddy-buddy” sense. I mean it in the most basic of senses. I feared he would never know who or what I was.

It hurts to write because I remember that time vividly. I know the pain I was silently going through and the hopes that ran through my head when I tried to sleep at night.

This fear wasn’t some melodramatic imagined thing either. It was real and based on my observations. Lucas was simply coexisting with me most of the time in his early years. We sat in the same room, and the only times I could get his attention were through a tickle or a silly sound. Even then, it was mostly hit-and-miss.

No eye contact. No returned hugs. No response to his own name or the names of others. I was in panic mode from the moment I got out of bed until the moment I struggled to sleep.

This was real.

Famously, the world’s worst in-home speech therapist pointed this out. She was working with him and, as I walked in the front door, he didn’t look up from his activity. She felt the need to narrate it.

“Oh wow. He didn’t even move. Did you see that? He didn’t even look up when you walked in the door. Like you’re not even there!“

To this day, I’m not sure what this “professional” was looking to accomplish with that statement. In the moment, I was deflated and annoyed all at once.

Yeah, we know, Debbie. That’s part of the reason you’re here.

Lucas was my only son. I loved him with all my heart, just as I do his sister. I couldn’t turn that off or stop wanting to protect him.

But the future I envisioned was cold and lonely. I imagined him sitting beside me for the rest of my life, oblivious to who I was or what my point was. I imagined a world where I would put all my love into a person who would never give it back.

So, you know what I did?

I did it anyway.

I loved that boy from day one and, even on the days when he didn’t look up at my voice or wrap his arms around me when I hugged him, I still loved him. I read children’s books aloud as he dashed around his room in circles. I bought him presents he didn’t want to open and gave him toys that he ignored. I felt like this was going to be our life.

It wasn’t.

Today, Lucas loves me. It’s on a ridiculous level at times. Last week, we toured a respite program and, as we walked through the building, he wouldn’t stop kissing me. It was nonstop. The employees thought it was adorable.

And it was.

It was also, to me in 2012, a miracle.

This is who my boy is and, whenever people see his language deficit, they think that this is our worst-case scenario. They think that it can’t get any harder than this.

But I know that’s not true. I pictured our worst-case scenario. It didn’t look like hugs and kisses. It didn’t look like communication. It didn’t look like this.

Many other parents raising autistic children know this fear and, for the most part, we all become pleasantly surprised by the reality. Does it mean that raising a child with profound autism is easy? Not at all.

It means that all the times I was there for him despite that fear added up to build the relationship we have today. I kept going in hopes that we could build that bridge.

And we did.

If I could go back to those early days, I would tell myself to just keep going. I’m saying that to anyone in a similar situation now.

Find your bond. Build it alone until they’re ready to build it with you.

It doesn’t take words. It just takes love.

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