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.

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15 comments

  1. Yes, it’s often a question what a nonverbal child is thinking. Kind of like trying to unscrew the inscrutable, I think.
    Your response to her summons (which is about the best word I can fit to what she did) did seem to be what she needed. For that, God (whoever or whatever you conceive him/her/it/them to be) make us truly grateful. And I think you and your wife will have earned your places in Heaven several dozen times over.

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    1. One can always hope, Alexander. My hope is that one day someone will be able to figure out what is going on with Cami and unlock the code that helps us understand her better. Until then…

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  2. I know exactly how you feel. K is going to be 18 in 2 weeks and he has never said a distinguishable word. But he babbles constantly. I don’t know if he calls me “Mama” because he says it all the time. “Ga, Da, Ya, or Ba” over and over but never directed at anything in particular. How do I know when he’s happy? He makes a mooing sound. How do I know when he’s mad? He makes a high pitched, very upset sound. I would love, just once, to know what goes on in his head.

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    1. You’re much further down the road than we are. I don’t know what Cami will be at 17, but I hope I can still have the patience and love for her I do now. But, like you, I don’t think I’ll ever stop wishing for some insight into her thoughts.

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  3. I was very moved by this post. The frustration inherent in not being able to communicate with words is obviously understandable. I like that you don’t shy away from that, nor from the heartbreak of dreaming that Cami can speak, but that you also allude to the uniqueness of her perspective. I agree with Tyler that the “unsolved mystery” at the end works. The most important thing in this case is that you comforted Cami. Difficulty aside, the need was met.

    I just nominated you for a Versatile Blogger Award. Details here: http://bit.ly/HzFmvt

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    1. Thanks so much, Sarah. Cami is, for us, the ultimate unsolved mystery. Don’t know that we’ll ever solve it, but at least now it’s easier to enjoy it.

      Thanks for the nomination! Now I’m off to see what it means!

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  4. Language is interesting… we rely on it so much. The words we choose (and how others interpret it) can bring us together or divide us. What I love about this post, in addition to your openness and willingness to tell the story, is what it made me think about. Even when my very verbal children are throwing fits and I can’t figure out what the problem is, most of the time they just want my attention. They want to know I see them and I love them. I wish you knew what Cami was trying to articulate. I can only try to imagine how that feels. But it touched my heart to sense that you still gave her what she needed.

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    1. Thanks, Angie. You make a great point and one I hadn’t even considered. Even those that can talk are communicating more than what they’re saying. If we all paid as much attention to that as we have to pay attention to Cami, I think we’d all be a lot better off.

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  5. I am a speech language pathologist and just started reading your blog and your journey with Cami. So I don’t know the whole story and this post is a couple years old, but…Have you worked with a speech pathologist? Even if Cami can’t verbally talk, she could still learn to communicate using alternative means. It sounds like she’s learned some signs, but there are tons of alternatives, such as picture symbols or a higher tech device or iPad that she could use to learn how to express herself. I live in the East Bay, but I know of a great clinician Fresno called The TALK Team that might be a good place to start. I look forward to reading through the rest of your site!

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