A mother’s letter on grief, communication, and the million words our children say without speaking
The grief no one prepares you for
When you have a child with complex communication needs, grief enters your life early. And it stays.
No one ever dreams of a talking child. You just expect it to be obvious, until it isn’t. So we grieve, not for a lost dream, but for the life we never really anticipated.
Once the diagnosis is in your hand, the endless pursuit of therapies begins. Assessments. Interventions. Strategies. As parents, we rush towards them anxiously, clinging to the hope that what seemed so obvious can still be our reality. If I help enough, my child will speak.
Then, over months, comes the moment. The realisation that it might not be that simple. No matter how much we try, the words won’t come.
We compare. We switch. We get frustrated. “Let’s start with pictures.” “AAC can help.” “Don’t give up -keep practicing those sounds.” We want to do all of it, because we want the best for our child. But the grief of accepting this reality weighs down on us.
Maybe the words will never come.
The hope that won’t quit
And still, hope never leaves. A new supplement. An amazing doctor. A massage that promises to heal everything. Camel’s milk. An intervention you have never heard of before. A thread of hope enters. It crashes. The grief cycle begins again.
But we know how important communication is. So we start anything we can. We yearn to know how they felt at the amusement park. We would do anything to know if it’s their tummy that’s hurting or their tooth. If their dress is itchy. Or the thoughts in their mind.
I laugh it off and say, “She woke up on the wrong side of the bed.” But deep inside, it hurts not to know.
The mountain of jargon
That’s when a heap of jargon arrives. And a heap of strategies. “Don’t use more than two words.” “Speak in a consistent tone.” “Offer her choices using pictures.” “Focus on core words.” “Model, model, model!”
On good days, we do these things. We research a bit more. We talk to other parents. We make notes. We try things at home.
On other days, everything seems hard. The voice in our head turns sharp. Will I be able to learn all of this? Am I doing this right? Why didn’t I start earlier? Is my child’s favourite colour really orange?
What if it wasn’t this hard?
What if all this knowledge, the things meant to help our children thrive, wasn’t so alien after all? What if it could be explained in everyday language? What if I didn’t have to learn about a vocabulary organisation system, or how a motor-planning approach is ground-breaking? What if I didn’t have to sit through hours of training only to still not know where to start?
Not because we are lazy. Because it is a lot.
There are still the things I haven’t figured out – behaviours, safety, the daily puzzle of why hot things are not so cool and why pants need to stay on. Always. And this is next to the laundry piling up in the corner. The bills and therapies we are struggling to pay for. The nights, in a row, when we haven’t slept.
So sometimes I wish it was easier. It’s only a wish. It wouldn’t stop us.
What we are really listening for
Even when we teach our children that “on” is not “in”, that “in” is not “under”, that “no” is a possible answer, deep down, we crave the “I love yous.” Or if not a full story from school, just a sign that they were safe today. Which weather they like. Why they think dad is funny when I just don’t get it, however hard I try.
Parents instinctively know how to listen and talk to their children. A medical diagnosis makes us feel as though parenting suddenly requires expertise, and sometimes it does. But what if we weren’t this hard on ourselves? What if we let our shoulders drop a little? Looked at our little ones and just paused. Set aside the textbook goals and started with baby steps.
What if we showed “crazy” on their AAC and talked about our day? Argued with them over whether dad is “funny” or “not”. Loosened the rules. Moved from “no” to “five more minutes”. Stopped over-emphasising “I want”. Let them know they can say “idli” is “yucky” if they want to.
Because in the end, that is the connection we are really reaching for. Disability parenting doesn’t have to be an endless chore, a constant overdrive, a chase behind milestones. If “I love you” is what we want to hear, we can press it on the AAC ourselves. Every night. We can put effort where it matters to us, too. Guilt is a never-ending companion. So we might as well chase the little pleasures while we have the chance.
Assume they are listening. Presume they absorb far more than we think. Set goals that matter to us as a family. Choose strategies by looking at our own child, not the chart. Become their biggest advocates, not by making them tap a word or type a sentence, but by letting them know: “I am listening.” That is all that matters. It matters to keep trying. And it is okay if it isn’t every day.
Because they are listening to us, too.
The small moments we live for
When we stay on we notice the small shifts. The little pauses and peeking into the screen. Typing their first word. Bringing out their device to make a point when they are on the verge of losing an argument with you. And that’s a dream worth fighting for.
Until then we live in those small moments. The ones where the husband gets pounced on the moment they step home with stories of the day.
“She looked at another child and held their hand. I think she likes them.”
“Guess what? She said ‘heart’ at the chai shop. There was a heart-shaped lollipop at the end of the counter. She never even eats lollipops, but she said ‘heart’ and I bought it for her and she ate it. She knew the shape. She asked for it. She is observing. She is there. Can you believe it?” Voice getting shriller and shriller with every sentence and tears filling the eyes.
Spend the after-bed hours decoding the day. “What was she trying to tell us earlier? Which song has she been humming? Which YouTube video has she been trying to search for?”
Those micro moments of connection and bond beyond developmental charts.
Because initially it would seem like we really care about the words coming out. But often that’s not the truth. We listen for the smile and the giggles when they do something naughty.
The different shades of anger in their grunts and whines, when they are really angry vs when they are just trying to negotiate. The sudden calm. The strong eye contact. The way they hover near us when we break down in tears in front of them.
We know they are saying a million words. That is what keeps us going.
A privilege worth fighting for
Over time, we learn what a privilege this connection is. What a privilege communication is, in any form – be it in pictures, or letters or voice. And it is a privilege we will keep fighting and striving for. Always.
Till then, we hold on to the little sparks, from our own kids, and from those around us.
A teenager texting his dad for the first time
A “sass king” story shared on a parent group about what someone said today on their AAC.
A friend’s son speaking his first sound.
It inspires us. It restores faith. It heals us in ways you can’t imagine.
Author: Keerthana Kolli
Keerthana is a Senior Product Manager leading Avaz Today, driving current product initiatives. She is spearheading efforts to rethink product–market fit for AAC in India, building for ecosystems where awareness and infrastructure are still evolving. She is the mind behind the Avaz Step-Up Vocabulary. A disability rights advocate and parent to an autistic child who uses AAC, Keerthana is known for her ability to hold emotional depth and design thinking at the same time, channeling personal insight into structured, high-impact product decisions.
