Between the Lines

My six-year-old son Evan is a “non-verbal communicator.” What this means, essentially, is that he does not talk. In days past, one might have used the words “mute” or “dumb” to describe Evan’s lack of speech. But these days the language is more positive. We focus on Evan’s attempts rather than his failures, and label his efforts more compassionately and more accurately. We call these trials “non-verbal communication” and we look for their signs as often as we can.

Despite his lack of words, Evan does communicate: He smiles on the swings; he cries at displeasure. He has mastered an “um-mum” that means, at various junctures: “more,” “mama,” “milk” and, believe it or not, “harmonica.” As in “har-mom.” My non-verbal communicator will raise his arms when he is ready to be picked up and walk to the door when he is ready to go out. He even heads to the bathroom if he wants to use the toilet. For a man of few words, he gets his needs across.

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I remember the first person who said, about my son, “He clearly won’t be a verbal communicator.” I remember thinking that the woman who made the pronouncement — despite her self-proclaimed expertise — was not someone I would choose to speak for my son. Who asked you? I wanted to say. And, Do you realize what you’ve just said? I didn’t respect the woman before she made her pronouncement, and I didn’t respect her afterwards. Who are you to tell me my son will not speak?

But even so, there it was between us, the word: verbal. As in “non-verbal.” According to her, my son’s future had been determined. “Non-verbal communicator.” I went home and sat with the news, and thought it the strangest twist of fate, how I, a writer, a woman who loved to talk, could possibly give birth to a child who would not speak.

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When Evan was six months old, I came to terms with the fact that he was, despite the best efforts of many doctors and surgeons, blind. I accepted that my child would not know my face by sight, that he would not see the sky or trees. It was a hard acceptance and yet I found other ways for him to see: sound and touch and texture. I moved his hands across my face to show him what he could not know with his own eyes, how his mother’s nose felt, the rough shape of her lips.

To be told, several years later, that Evan would not speak was another rite of passage. I’m still not sure I believe that my son is truly non-verbal. But at age six, it’s without doubt that Evan is profoundly speech delayed, and I’ve come to accept that we may never get full sentences out of our son. I have accepted the twist of fate and have learned about the world of augmentative communication: computers and switches and electronic devices that express the language my son does not have at his disposal. Today, Evan wears a wrist talker, a Dick Tracy-like device that has four buttons on it. We can program the buttons to say things we think Evan might like. Thanks to the wrist talker, he can tell his friends “hi” or his therapists “no”. He can say “all done” and “more.” Sometimes he presses the “no” button so often I am reminded that even if he can’t talk, he’s still a child at heart. “No no no no,” he’ll say, pressing the button over and over.

“I guess he’s telling us no,” I’ll say with a smile.

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There are more challenges to having a non-verbal communicator for a child than one might imagine. Recently, when Evan was sick, I had no way to read his moans and whimpers except to provide comfort, Motrin, a warm lap. Some classical music to keep him company in his room. He could not tell me he did not want the music, or that he’d rather be in bed than in my lap. Even taking him to the doctor offered up an experiment in blind trust: that I knew something was wrong, but not what. That he might need medicine, but for what? As a non-verbal communicator, Evan does a good job making his needs known, but a sick non-verbal communicator can’t tell you his throat hurts, or his tummy feels bad, or that he’d rather have juice than milk.

My son may be non-verbal, but I was a writer long before I became a mother and I am supposed to have words for this experience, to be able to describe and explain. To know what to say. It never occurred to me that my son might teach me, by virtue of his lack of speech, how to live with that silence. How to be mute, if you will, about what this all means.

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My daughter, who is nine, talks up a storm. In a way, she talks enough for herself and my son. She doesn’t, however, interpret her brother’s language (or lack thereof) the way you often hear siblings do. “What do you think he wants?” I’ll ask my daughter, Josie. “Heck if I know,” she’ll say. “Maybe his cup?” Because I am closest to him, I am often asked why Evan is upset about something or what his cries mean. Those who ask think I have the answer. Shouldn’t I, as his mother? Sometimes I do, but often I am right there with them, shrugging my shoulders along with everyone else, saying, “I wish I knew.”

And then there is the question, always in the background, the one the mother at the swings would probably want to ask: Will he ever really talk? Will the “um-mums” evolve into more purposeful language or will he be a non-verbal communicator his whole life? For now, there is no answer. For now, for the moment, there are no words.