[Note from me: I’m slowly writing a collection of essays and reflections that I hope to someday compile into a book. Over the last however long it’s been, I’ve posted on this blog a few drafts of pieces I’m considering including in the book without actually calling any attention to them, but this time I will. This is a first, rough draft of one I wrote a few weeks ago. Feel free to comment, praise, pan, etc. My plan is at some point – hopefully early next year – to spin these off into a new web site, which will focus on the ‘collection-in-progress’ (still feels weird thinking of it as a ‘book’). Anyway, more on that later. On with the show.]
“What if he never talks?”
This is a question that for a long time we could not bring ourselves to ponder, but it is one that used to follow us everywhere we went. J-Man could do a syllable here and a syllable there, at least enough for us to think he would really talk someday. But as he got older and his peers’ vocabulary exploded, we became disheartened. Then when children many months younger than him started really talking, we became depressed and often despaired.
The worst was seeing toddlers saying “I love you” to their mommies and daddies. We’ve never doubted that J-Man has always loved us without condition. But just as parents need to say it to each other every day, we’d love to hear our kid say it to us too. We became jealous of the other parents. We’d close our eyes and imagine what his sweet little voice would sound like if he could say it to us. And all of our imaginings left us in tears.
For months, everything was “kuh-kuh”, but at least those things had a name. Eventually there came “muh” and “nuh” and a few more. He made up his own versions of one or two-syllable words and we came to understand the piecemeal language he had created for himself. Near age three, he tested almost two-thirds of his life behind ‘typically-developing’ children – barely at a 12-month level – but he was communicating, little by little.
A few days ago, I was talking to a mom whose son is nearing five. He’s completely non-verbal. He has never uttered a single sound that wasn’t a moan or a shriek or some other shapeless noise. She said the following words, and as I type them I can still feel freezing water creeping through my blood as painfully as when I heard her say them.
“What if he never talks?”
She said it as a rhetorical question, like one you call out to the universe or the deity you are having a shaky relationship with at the moment. You don’t really believe an answer will come, and as with many of the questions we have as parents of an autistic child, no one can really give you one. We walk similar paths, but all of our children are different. There will always be steps we have to take alone. But we can sit with each other as we ask the question and understand much of the fear and despair it is born from without judgment.
For those of us whose children begin to find little foot and hand holds on the mountain of speech they climb, each inch they earn fills us with renewed hope. There came the day my son ran up to me after school and said “Dah-deh”, and I thought I would cry enough to fill every crack and furrow left in the earth by the years of challenges we have often feared were insurmountable.
But when I look back down the path and see the parents of the non-verbal children still searching the smooth, holdless face of this towering rock, tears and sorrow fill my gut. I remember being back there, secretly loathing those who had gone on ahead of us. I am not proud of this, but neither do I want to forget it.
I am tempted to try to rationalize her question away, thinking, “Well, he’ll be able to communicate somehow someday, whether it’s by pictures or keyboard or something.” Then I realize I am too quick to go there, like I’m yanking my hand away from a hot stove. This is why deep down I know I need to resist the urge to forget the past as we continue to move forward.
We’re all part of this unfathomable relay of parents trying our best to ferry each other up the mountain in any way we can. But we can’t really climb back down and show others the way up. It doesn’t work like that, just as it couldn’t for us with those who came before us. The path is different for each of us. But I can still call back and give them what’s probably the best advice anyone’s given to me so far – “Just keep going, because that’s the way through.”
But the minute I say that, my mind immediately starts to wander into the parental daydreaming we all do. We dream of better days. We try to imagine life somewhere down the road or over the mountain at a place we cannot even begin to name. We’re so far off the typically-developing path of the road more travelled. It could be next month or never when the thing we dream of happens. We live with the dreaming and the despair in constant tension.
In my dreams he comes and talks to me. He asks me to read him some great adventure story, interrupting me from time to time to ask me, “What comes next Daddy? Does the good guy win?” I smile and keep reading. He can interrupt me all he wants, and I’ll never be unhappy.
He comes to me while I’m asleep and tells me about his day. He makes up crazy, imaginative stories about what he thinks the neighbor’s dog and their pet ferrets talk about all day. He asks me what keeps the moon in the sky and why it never falls. I give him insufficient answers, and he asks me, “Why, Daddy?” So I tell him something more, and he asks me “Why?” again. I do not for one instant wish he would stop. He could ask me “Why?” until time ended. I dream contentedly while I answer every single question.
And I know the aching sorrow that comes in the morning after these wonderful dreams. I hear the moaning and kicking in the other bedroom. I try to pretend it’s singing, and come to suppose it probably is. But still I despair of life talking mostly to myself, of never hearing his sweet voice talk to me. I wonder if that mom is willing to bargain all of her limbs in trade for her son to talk, and whether she knows that there have been plenty of days I would have too.
I know that none of this is fair to him. He is trying so hard, and some days watching him struggle is nearly impossible to bear. I don’t for one instant judge him as lesser than anyone. He is my superstar. I just want him to be able to tell his story to the world and not have to work so hard to do it. And oh what stories he could tell.
I know now he will talk someday and in time discover how to tell his story in a way that will be uniquely his. He will continue to find ways of piecing odd-shaped, tenuous syllables together into his own creative expressions of himself. His language sometimes seems to grow at the pace of geologic time, but it does grow. His words are now beginning to sound like how we were taught they should, though I have wondered whether such rules are overrated. What any of this will mean for his future I simply do not know.
I do know that we are able to venture into new questions now, while that mother’s remains unanswered. But I see her jam a finger into a crack in the rock that I can’t even see. She grits her teeth, looks up, and pulls.
Just keep going, because that’s the way through.