Being the Parent of a Nonverbal Child

An hour after I’d put her down for the night, Cami started thrashing and wailing on her bedroom floor. I knew that cry. It was the no-frickin’-way-am-I-going-to-sleep-because-my-world-is-ending cry. This cry is distinguished by its ability to travel the entire length of the house and reach my wife and me in the living room even while the TV is on.

I went in to see what was the matter. Cami sat up, tears streaming down her face, and calmed down instantly. She pointed upwards and uttered one, sweet, unintelligible syllable. When I couldn’t understand and didn’t respond properly, she repeated the movement and sound. I told her I didn’t know what she was trying to say. She did it again. And again.

And again.

Cami just turned 7. In some ways, I feel like I barely know her. In her eyes and her embrace, I can see her heart. But her mind? How she perceives the world? I have no idea. Thoughts are best communicated with language. Cami can sign a few words and say a few more, but that’s it. There’s not enough tools in her kit.

I think she’s said “Dada” a few times, but I’m not really sure. Same for “Mama.” “Hi” is her favorite and clearest word. She makes lots of other sounds that don’t sound anything like actual words. She certainly seems to think she’s saying something, but it’s all gibberish.

And her range is limited. Forget the question of what her brain can process (no one knows the answer anyway), evidence suggests that many sounds are simply beyond her physical capabilities. For example, she’s never made any “T” or “K” or “M” sounds. Surely, for all her babbling, she would have stumbled on those at some point. But she doesn’t.

Erin and I have both had dreams where Cami could talk normally. Those are both wonderful and heartbreaking because we always wake up. Our beliefs allow for the idea that one day, in the next life, we will have long conversations with her. We always imagine her first words to us will be “Thank you.” We both work so very hard to be worthy of that moment.

I don’t want to get stupid about this and admonish every parent out there to take the time to appreciate the fact that their child can talk to them. What good does that do? My wife and I also have two typically developing kids and I know there’s a burden there as well. When your kid can talk, you spend a lot of time telling them to shut up. Kids can be so noisy.

But not Cami. If the past seven years are any indication, Cami will never use profanity. She’ll never lie.¬†She’ll never tell us she hates us. Sometimes, I think she’s got it all figured out. Cami uses hugs, not words.

I finally brought Cami out into the living room. She still pointed skyward and uttered that syllable. I still scratched my head. What did she mean?

We went back through her nightly routine. She watched some TV, had a snack and drank some water. I never figured out what she wanted, but she was satisfied. She gave me a hug and went right to sleep in her bed afterwards. She had done her best to tell me what was wrong and I had done my best to satisfy her needs as best I knew how.

I guess that’s enough.