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.
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.
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.
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.
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.
19 replies on “Between the Lines”
Intense love meets deep frustration. You put it into words so well.
Thanks for another great column! My daughter is a non-verbal communicator, too. Others are always asking me what she’s trying to get across, and I don’t always know, which makes me feel guilty. But I know she has a lot to say, and I know Evan does too.
Thank you again for putting our thoughts into such beautiful words…our daughter was non-verbal until the age of about 6…we felt your frustrations, your questions…God chose to bless our daughter with speech finally and now she talks non stop at the age of 12…one day your son may too…we will pray he does
Although my son is not non-verbal, he is fairly delayed and the frustration for both of us when mama “just doesn’t get it”. Yes, yes. The guilt of being mama and still not understanding sometimes, no matter how badly you want to.
Beautifully written, thank you.
Your beautiful piece broke my heart. I, too, will pray for you and Evan. Thank you for sharing your heart with other moms.
Im a freelance writer and almost did a story on an extremely bright, talented high school senior who was diagnosed as a “slective mute,” I believe they called it that 20-plus years ago because she chose not to talk the first seven years of her life; her situation was extreme shyness, social anxiety, and she came from a very healthy, “normal” family. My reason for telling you this is that she took music class from early on and that experience and interaction with instruments, sounds, and eventually singing turned her life around. Music awoke the person inside her, gave her a way to express herself. NOW she is a college student studying music education, I believe, and credits her turnaround to music and a very supportive family. I know every situation is different, but I wanted to share this with you. Good luck to you and your family.
Words are important, to be sure, but they are certainly not the only way of communicating, or of loving. Thank you for reminding me of that fact.
thank you again for your beautiful writing. for now there may not be an answer to what evan may or may not say out loud one day but we have your words to move us, educate us, and allow us a peek inside a part of evan’s world.
i, for one, believe he will be ordering up a Big Mac one day and then promptly chowing down. and i’m going to go right on believing that until the day i read about it in this column.
Another fabulous column. It is both universal & personal at the same time, and taps into many different streams of insight & aspects of relationship. Thanks!
What a beautifully written essay!
I remember telling my husband when I was pregnant with my son that I just couldn’t wait for him to be born and get to his toddler years so that I could hear what he had to say. I wanted to know all about him — who he was inside and out. So I often consider the irony of finding myself with a mostly non-verbal child! But he is just four and I have hope that he will one day talk, acceptance that he might not, and a constant tug-of-war between the two.
Thanks once again for fine writing that shares and, yes, teaches and informs.
I love this passage especially: “It never occurred to me that my son might teach me, by virtue of his lack of speech, how to live with all that silence. How to be mute, if you will, about what this all means.”
After much research and effort, I succeeded in placing my developmentally delayed, medically fragile, nonambulatory son who could hear but not speak, into a Deaf and Hard of Hearing (DHH) preschool class. I did so because his best mode of communication was ASL (about 50 signs at that point). He cried whenever the children in his new class rushed up to him using sign language, a little too close for comfort, and faster than he was accustomed to. We were told by the lead teacher, herself deaf/hard of hearing, that he wouldn’t succeed in the class because he wasn’t communicating. I couldn’t convince her that his reaction was indeed communication.
Thank you for spelling out so eloquently the unexpected ways our non-verbal children communicate, along with the limits.
The image of Evan pushing “No No No” on his wrist-talker is classic. Children are children!
I’m glad you brought up the myth that mothers always intuitively know what their children want/need. We may know what they’re “saying” quite often, more often than any other person does, but sometimes we, too, are in the dark. We prove ourselves mothers by trying to figure it out, by trying to be patient, by believing that our children have something valuable to say–not by automatically, and accurately, interpreting their language, whatever form it may take.
Beautiful. Thank you for sharing your son and your life in such a personal way.
Vicki, this is such a moving, evocative column. Thank you.
Vicki, your columns are so beautiful. I also have a child with more apparent disabilities than abilities — non-verbal, non-ambulatory, limited vision, developmental delay –but who give such joy to us in just his being and his profound attempts to be present in the world. My only prayer is that we give him as much joy as he gives us. I find your writing incredibly uplifting, realistic, hopeful, cynical enough, and ultimately comforting and helpful. Thank you for writing this column. I look forward to reading it, and to sharing it with parents of both typical and special needs parents.
I echo all the thanks and comments above. This is beautifully expressed. I’m so grateful that there is a regular column for mothers of kids with special needs! Thanks, Literary Mama and thanks, Vicki!
I can appreciate the repetitive “no” coming from Evan’s wrist-talker. Our Jordan “echos” a lot of phrases he’s picked up somewhere which may or may not have anything to do with what he’s thinking or feeling. And probably finds it irritating (or hilarious)when his sisters jump around suggesting several things simultaneously to find out what he needs. But at least he’s making an attempt to communicate. Looks like Evan’s realizing more and more that people around him are there to communicate with. Blessings…
Thanks for this vivid glimpse into your and Evan’s world. I was especially moved by the idea of you as a writer and presumed lover of words, in this seemingly word-less relationship. I did wonder, How does Evan receive your words? When you talk, sing, read aloud?
The repeated “no’s” on the communicator is unforgettable. :-)