|
The Distance Between Home And Hello
|
|
Some journeys take you across oceans, through mountain ranges, or into countries you've only dreamed about visiting.
Others take you to Walmart.
On March 25, 2026, my daughter Grace and I made a trip to Walmart. To most people, that probably doesn't sound like much of an adventure. It's a place to pick up groceries, find what you need, and get back home before the ice cream melts.
But when you're the mother of a daughter with autism, cerebral palsy, sensory processing difficulties, and significant communication challenges, even an ordinary trip can become a journey into unfamiliar territory.
And sometimes, the greatest distance you'll ever travel is the distance between wanting to say something and finally being heard.
Grace was eighteen years old. She had spent much of her life working to do things that other people often take for granted. Speaking was one of those things.
She is minimally speaking, but that doesn't mean she has nothing to say.
Quite the opposite.
Grace is one of the most social people I know. She loves people. She wants to greet them, connect with them, and be part of whatever is happening around her. She has opinions, preferences, a wonderful sense of curiosity, and a desire to participate in the world.
The difficulty is getting the world to understand her.
Over the years, I've learned that communication isn't always something that comes out of your mouth. Sometimes it comes from a gesture, a sign, a sound, or the determined look on someone's face. Sometimes it comes from touching words on an electronic device.
Grace uses an augmentative and alternative communication device, commonly called AAC. It gives her access to words and phrases she can select to communicate.
It sounds simple when you explain it that way.
But imagine trying to join a conversation while searching for the words you need, remembering where they're located, and working through the physical movements required to select them.
Now imagine doing that in a busy store, surrounded by people, noise, bright lights, movement, and all the distractions that come with being out in public.
That's part of what makes an ordinary shopping trip different for Grace.
Living in rural Tennessee, we don't have unlimited opportunities right around the corner. Going places requires planning, and sometimes the hardest part isn't the drive. It's wondering how the outing will go once we arrive.
Will the environment become overwhelming? Will someone understand what Grace is trying to communicate? Will she get the opportunity to participate, or will someone simply talk around her?
These are questions that follow us long before we ever leave the house.
As her mother, I want to protect her from the things that can hurt or overwhelm her. But I also want her to experience life.
Those two desires don't always cooperate.
There is a delicate balance between keeping someone safe and unintentionally holding them back.
I've often thought of parenting and caregiving as climbing a mountain without a safety rope. You can't spend all your time looking at how far you might fall. You have to concentrate on the next handhold, the next foothold, and the person who is depending on you.
But I don't want Grace to spend her life watching me climb.
I want her to discover what she can do herself.
That's why opportunities to communicate in the community are so important.
On that March day at Walmart, Grace used her AAC device to introduce herself.
“My name is Grace.”
Four little words.
Nothing spectacular, perhaps, to someone who has spoken thousands of sentences without having to think about how to produce them.
But those words carried years of effort, hope, and determination.
They were more than a greeting.
They were Grace presenting herself to another person.
She wasn't waiting for me to explain who she was. She had a way to do it herself.
For a mother who has spent years advocating for her daughter to have access to communication, moments like that mean more than I can easily explain.
There is something deeply moving about watching your child do something that has taken so much work to make possible.
It isn't simply pride.
It's relief. It's hope. It's the realization that another little piece of independence has become possible.
It's also a reminder of how much we take for granted.
Most of us walk into a store without wondering whether we'll be able to tell someone our names. We don't usually have to plan how to say hello or worry whether another person will give us enough time to finish.
We expect to be recognized as individuals.
Grace deserves that same expectation.
I have spent much of her life trying to make sure people understand that she is a person first, not a collection of diagnoses or limitations.
She has things she enjoys, things she dislikes, and places she wants to go. She loves music, bowling, building things, and being around people. She wants to make connections.
And she has a name she wants others to know.
That day, Walmart was not simply a store.
It was a place where she could practice being seen and heard.
I know there will be other outings that won't go so well. There will be days when the noise is too much, the environment becomes overwhelming, or communication doesn't happen the way we hoped.
Progress isn't a straight line.
Sometimes we take several steps forward and then spend what feels like forever trying to find our footing again.
I have learned not to measure Grace's life only by what she cannot yet do. I try to notice what she is doing now that once seemed so far away.
And I try to remember that her progress belongs to her.
My role is to provide support, encouragement, and opportunities—not to decide the limits of what her future can become.
That's easier to say than to practice.
When you have spent years protecting someone, stepping aside can feel almost as frightening as stepping off a cliff.
But independence doesn't have to mean doing everything alone.
Sometimes it means having the right support available while you do something your own way.
Sometimes it means having someone beside you who knows when to help and when to give you a little room.
And sometimes it means walking into Walmart and telling someone your name.
I don't know how many people who encountered Grace that day understood what it took for those words to be heard.
They didn't need to know her entire history.
They didn't need to know every appointment, every frustrating obstacle, or every time I had worried about her future.
For that moment, they only needed the opportunity to meet her.
And Grace had the opportunity to introduce herself.
That is something I want more of in her life.
I want her to be able to walk into unfamiliar places and know that her voice matters, whether it comes through speech, a device, or another form of communication.
I want people to see a young woman who wants to participate in the world, rather than assuming she has nothing to contribute.
Most of all, I want her to have opportunities to discover who she is becoming.
We live in a world that often measures success by how quickly someone reaches a destination.
But Grace has taught me to measure a journey differently.
Sometimes the important part isn't how many miles we've traveled.
It's what becomes possible along the way.
Our trip to Walmart didn't require passports or suitcases. There were no famous landmarks waiting to be photographed.
There was simply a mother, her daughter, a communication device, and an opportunity.
Yet that ordinary outing became one more reminder of why we keep trying, even when the journey is exhausting.
Because every time Grace gets to make her own connection, the world becomes a little larger for her.
And every time someone takes the time to acknowledge her, that world becomes a little more welcoming.
I can't tell you exactly where all of this will lead.
I don't know which challenges will become easier or which new ones we'll encounter.
But I do know that on March 25, 2026, Grace took another step toward being able to speak for herself.
And I was there to witness it.
Some people travel thousands of miles to discover something extraordinary.
That day, we went to Walmart.
And my daughter told the world who she was.
Her name is Grace.
The Preservation Foundation, Inc., A Nonprofit Book Publisher