[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.
Posts that hopefully are similar:
- The 439 Stages of Grief
- In Dreams Awake
- Holiday School Party – Things Worth a Thousand Words Edition
- A Tale of Two Speeches
- A Few Minutes Back on the Main Road – What is ‘Normal’ Exactly?
- Many Ways to Say ‘I Love You’
- I Have a Dream for Autism
{ 9 comments… read them below or add one }
That captures perfectly in a heartbreaking way the reality of the journey we take. Thank you for this- it speaks true to the fears and hope that many parents on this path have. Some can’t say it and others don’t want to, but it exists.
Thanks for this post. E’s speech difficulties remain probably the most worrisome part of his diagnosis for me. So much else seems to depend on the ability to speak.
Thanks for both of your comments. I often worry that some people will take some things I say out of context or not see the bigger picture of what I’m writing about. Many parents I talk to – usually of children without special needs, but a number of them with autistic kids too – don’t seem to be able to grasp the concept that we can celebrate the unique little people our children are and still feel these heart-wrenching emotions for them and their struggles. It’s as if anything this challenging means we have to immediately work to eradicate its cause, which to me is to totally miss the point.
With autism, the language we use about it and our kids has the potential to be so loaded and so easily misunderstood. There’s the endless back-and-forth about ‘autistic child’ vs. ‘child with autism’ and then all the emotion-filled conversations about ‘neurodiversity’ and ‘cures’ and so on. How we talk about things in blog posts, the media, books, or everyday conversations can be pretty high-stakes, and I so wish it wasn’t.
Because of that, the emotions themselves become part of the language. When you talk about fear and sadness, many immediately assume those are completely negative emotions that show how painful and tragic autism is, which is completely opposite the point I’m making.
I tell some parents that this is the biggest challenge of my life and it’s often heart-rending to watch our son struggle so hard, but this is also the most rewarding thing I’ve ever done and I wouldn’t change who he is nor would I trade my life for all the riches in the universe. Often they look at me like I’m crazy. If I am, so be it.
As I think you all have figured out and I hope others do too, sometimes our best move is to see fear as fear, sadness as sadness, and hope as hope, be honest about how we feel, and not try to weave an entire interpretation of what to ‘do’ about autism as a result of those emotions. I think we’re sometimes better off just trying to ‘be’ rather than ‘do’ all the time.
In your dreams, J speaks fluently.
But in your waking hours, where he’s still in the beginning stages of scaling that particular mountain, he might be way ahead of where he is on *that* front, when it comes to *receptive* speech, and to readiness for basic literacy skills (letters and sounds, phonetics) and playtime with a computer keyboard so he can *make* the letters he’s learning the sounds of. Because the next thing after that, is *typing* words he doesn’t (yet) have the wherewithal to synthesize with lips and larynx.
It’s worth noting that a number of originally non-speaking autistic young adults have gone from supported typing (call it “FC”, or if you don’t think FC is okay but you do think Soma Mukhopadyay passes muster, then call it “rapid prompting”) to independent typing… then to *sounding out* the words they type.
Maybe in dreams, J says “I love you” and asks by voice what makes the planets spin (answer, courtesy of Jerry Newport, is that God is autistic!)… but if he gets to do that by keyboard first in real life, isn’t that even better?
@Phil – Hi, and glad you came over to visit!
I realize that we haven’t really caught up our readers with our son’s progress of late. The holidays and my deteriorating wrist have put us behind on that.
In any case, J-Man’s receptive speech is clearly far better than we originally thought, and over the last few weeks his improvements have been startling. He is more and more able to give us some idea how much he understands us and is trying to communicate back to us using word approximations, syllable-by-syllable communication, and picture communication.
‘Syllable-by-syllable communication’ (my made-up term) has turned into a real winner around here once we pushed him toward it. With this, he communicates one syllable of a word using his best approximation, then we repeat it back to him indicating that we heard and understood him, then he continues with his best approximation of the next syllable, and so on. Following this approach, we’ve gotten through entire sentences, stories, etc. But most of all, we’ve been able to differentiate words for the first time.
For example, any word that started with ‘m’ used to be ‘muh-muh’ or ‘mo-mo’ or something like that, and he wouldn’t go any further. Now, for example, ‘monkey’ goes like this:
[Note - he tends to get a smidge echolalic with syllables.]
J – “Muh-muh”
Me – “Mon”
J – “kee-kuh”
Me – “key!”
And ‘many’ might go like: “Meh-muh”, “Meh”, “Nee-nee”, “Nee!”
There are still many sounds he cannot make and others that he struggles to make clear or differentiate from others, but we are really getting somewhere, which is awesome.
His recognition of letters and sounds, which extend into being able to read multi-syllable words (again, expressed using this syllable-by-syllable method), increases by the day it seems. He rapidly goes through most any sight word card we give him. The other day he was trying to read stuff off the TV screen. We’ve been really working on this both because of his rapid growth in this area but also just because he really seems to love words and letters.
The main stumbling block with typing and other augmentative communication devices is that he’s – for lack of a better word – a ‘button masher’. While it’s some better lately, he can easily fall into perseverating on pressing buttons or getting so overexcited about seeing letters appear on the screen that he goes into a full stim and is unable to really go any further with it. It’s hard to draw him back in after he presses ‘K’ 20 times while doing his whole-body stim.
That said, this is something we’re going to keep reintroducing on a regular basis. I do think something aug comm-related is in our relatively near future. His speech is showing good improvement lately, but we’ll be employing various methods of communication for a long time I’m sure. I hope this is something we’ll be ready to explore further at his next IEP meeting, which is still about 8 months away.
Just wanted to say thank you for this. I have a nonverbal almost 5-year old daughter and your writing here expresses my heart and life completely. Keep dreaming!
Rhemashope,
One thing I’ve learned is that what actually ends up happening with him is far more astounding than what I dreamed of. He’s always full of surprises!
It is hard to dream sometimes, though, as we can barely see five minutes past where we are a lot of the time. We’re bombarded by so many negative messages about autism, and it’s easy to lapse into feeling that way when progress seems so slow or nonexistent.
But time and time again, the J-Man has called us out on this with his ‘watch what I can do now!’ attitude. One of the biggest lessons he’s taught me is to be assured of the things we hope for with him and be certain of him for all that we cannot yet see.
Sounds like J-Man and my Rhema are cut from the same cloth! Your last paragraph reminds me of hebrews 11:1 – “Now faith is the substance of things hoped for, the evidence of things not seen.”
Blessings to you and your family!
That reference was intentional on my part. Good catch! In my opinion, some Bible translations butcher the poetic beauty of that verse, which I still think is one of the most perfect sentences ever written. It has a new and special meaning for me now.
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