For years, I hid.
Not because I was ashamed of my son—but because I was exhausted by the judgment. The looks. The unsolicited advice. The quiet assumptions that if I just disciplined him more, corrected him sooner, or tried harder, the behaviors would disappear.
People only saw what was happening on the outside.
They didn’t see sensory overload.
They didn’t see regulation happening in real time.
They didn’t see protection.
They saw behavior—and filled in the rest with their own conclusions.
So I learned to shrink. To avoid certain spaces. To brace myself in public. To prepare explanations I never wanted to give. Like so many parents and caregivers, I carried the weight of other people’s misunderstanding while trying to hold my child steady.
Recently, I read a post by Kate Miller that stopped me in my tracks.
Kate, co-founder of Ausome Indy, shared a reflection about her son Beau that was not defensive or performative—but deeply educational. She named a reality many families live quietly and many outsiders rarely understand.
She wrote:
“One of the hardest parts of his autism is something people rarely understand: his self-injurious behaviors are not about anger or discipline, they are about regulation and survival.”
That sentence alone reframes everything.
Kate went on to explain what so many parents and caregivers wish the world could see—that for some individuals, the nervous system does not offer clear signals of safety, grounding, or body awareness. When the world becomes too loud or overwhelming, the body seeks sensation not to misbehave—but to survive.
Kate continued:
“For Beau, hitting, head-banging, or pressing hard against himself can actually create a moment of relief. It’s his way of saying, ‘I need to feel myself. I need my body to make sense again.’”
This is the part most people never see. And it’s not limited to childhood.
These moments happen with teens.
They happen with adults.
They happen with individuals living with intellectual and developmental disabilities across the lifespan.
Yet too often, when a caregiver steps in—holding arms, blocking movement, staying close—the response from the outside world is judgment instead of understanding.
Kate named that moment plainly:
“If you see a parent step in quickly, hold arms gently but firmly, or block a movement, please know it’s not control. It’s protection.”
That clarity matters.
Why Our Voices Need to Be Heard
In the disability community, story isn’t optional. It’s essential.
Policies don’t shift without understanding. Services don’t evolve without listening. Communities don’t become inclusive by accident. Allyship grows when people are invited into truth—not through shame, but through education.
When families share what life actually looks like—sensory overload, regulation, protection, exhaustion, advocacy—the world is given a chance to respond differently next time.
The pool manager pauses.
The passerby hesitates before judging.
The educator listens more carefully.
The space becomes safer—not because rules changed overnight, but because understanding did.
This is why the work Kate and her sister, Ellen Miller, do through Ausome Indy matters so much. They don’t simply host events. They create environments where families can exhale—sensory-friendly, judgment-free, and free of charge. They negotiate access so others don’t have to fight for it alone.
They remind us that access isn’t charity.
It’s dignity.
Sharing Stories—Responsibly
Kate’s post also models something else we don’t talk about enough: responsible storytelling.
Many of our stories involve people who are vulnerable—children, teens, and adults who may not be able to consent in traditional ways. That requires care. It requires restraint. It requires humility.
Kate didn’t sensationalize her son’s experience. She humanized it. She educated without exposing. She told the truth without asking for pity.
She shared what it costs to love someone whose body does not always cooperate:
“Imagine loving someone so deeply and knowing they are in pain but they can’t tell you where, how, or why.”
That sentence alone builds empathy in ways no statistic ever could.
When Stories Build Bridges
I’ve seen firsthand what happens when stories are shared with integrity.
After writing and sharing my son’s story in 14 Minutes: A Call to End Seclusion and Restraint, I was invited by the Noblesville School District Executive Director of Special Education to speak with their special education team—including BCBAs and RBTs.
The invitation wasn’t rooted in defensiveness. It wasn’t about justification. It was about learning. We all sat around a table and talked — sharing, seeking input, and we functioned as a team. One collective with one goal: better serving our children.
Under thoughtful leadership, the team wanted to hear directly from a family. They wanted to better understand lived experience as they continue to grow and strengthen the services they provide.
That invitation was the fruit of storytelling. When we share responsibly, people listen. When we speak honestly, doors open. When we stop hiding, bridges are built.
On the second Saturday in February, the Autism Society Indiana’s “Caregiver Connection” will host a Telling Your Story & Advocacy Workshop for caregivers. The Arc of Indiana hosted several workshops last year.
Spaces like this are vital. They offer tools—not scripts, not pressure—but guidance on how to share their stories in ways that educate, protect, and invite understanding. They help families move from isolation to clarity, from being misunderstood to being heard.
These trainings don’t just build confidence. They build connection. They make it possible for stories to travel where policies and data often cannot.
The world we want does not arrive fully formed. It is built—story by story, moment by moment.
So perhaps the question isn’t whether our stories matter—but whether we are willing to step out of hiding long enough to let them teach.
What might change if more of us chose courage over silence?
Do you have a story to share, including how the work of The Arc has impacted you or your family? Click here to use a simple form to send us your story to share as we continue to celebrate our 70th anniversary!
Marya Patrice Sherron is a dedicated advocate, a proud mother of two incredible children with disabilities, and a valued member of The Arc of Indiana’s Board of Directors.
Visit: A Time for Hope Blog
Visit Marya’s Website: Time to Dance