[Please note…the image above is not a photo of Jackie, Jadyne, or anyone in the CURE SYNGAP1 community. Photos of Jadyne are inserted within the article below with permission from the author.]
This post was originally published on Substack by CURE SYNGAP1 Advocacy Director Jackie Kancir and is shared with her permission. Her daughter, Jadyne, was diagnosed with SYNGAP1-Related Disorders in 2019.
“If my child is having a meltdown in public, please don’t approach.”
That post is going viral on social media right now because it resonates with many families. It ends with a simple instruction: “Mind your business and let us get through it.”
I know exactly what that feels like.
That sharp, exposed sensation of being seen when everything in you wants to disappear. The heat rising under your skin. The way every set of eyes becomes something you have to brace against.
The noise. The unpredictability. The sense that everything is slipping faster than you can catch it. The calculation running underneath it all, steady and relentless:
“How do I get us out of here safely?”
And the other thought, the one you don’t say out loud:
“Please don’t make this harder.”
Most of the time, the kindest thing someone can do is exactly that. Keep moving. Don’t crowd. Don’t turn it into something bigger than it already is.
Most of the time.
But not always.
Some moments don’t stay contained. Some moments break the boundaries we try to hold around them. In those moments, there is no version of this you can solve alone.
In case you ever find yourself passing a family in this type of distress, I want to share a few examples of the type of help that did just that; it helped.
A Water Park
Chlorine thick in the air. Sunscreen. Heat rising off wet concrete. The constant rush of water and distant laughter that no longer felt like it belonged to us.
I had taken my eyes off my daughter for a moment, just long enough to put sunscreen on her younger brother.
When I looked back, she was already moving up the stairs leading to the highest platform in the park—the free-fall slide.
A thirteen-year-old girl so tiny that she looked only ten. Barely any language. An IQ of 40. A seizure disorder. A body that could betray her without warning. A girl more likely to run forward in fear than safely turn back.
I told my eight-year-old son not to move. Too sharply. Then I ran.
By the time I reached her, she was on the grated landing between levels. The metal sharp under our bare feet. Water splashing down on us from the slides above.
Then it shifted…
Her body hit the ground. The water made her slippery, impossible to hold. She flailed, slammed against the grated metal, her skin already breaking. Blood mixed with water and ran in thin, diluted lines down her arms and legs. Her screams cut through everything.
People kept moving.
The metal clanked as they climbed past us. A voice, irritated, told us to get out of the way. Another told me to get control of my child.
I could not lift her. Even if I had the strength, I could not carry her across the park, find the exit, get to the car, keep track of my son.
My mind fractured.
Where is the exit?
How far is the car?
What if someone kidnaps my son?
What if she runs?
What if she falls?
What if she seizes?
Why did I bring them here?
In my mind, in that moment, I had failed both of them.
All of it running underneath a voice I forced to stay calm, steady, as I tried to keep her from further injuring herself.
Where is security? I need someone stronger. I need help!
No one else could hear the deafening chaos that stayed contained inside my mind.
Time stretched and collapsed at once. I don’t know how long we were there.
Then a voice, close but not too close.
“Can we help?”
A woman. A man beside her. She introduced the man as her son and told me she has another son with autism. Not loudly. Not to center herself. Just enough for me to understand she saw what was happening.
Her son crouched down, bringing himself level with my daughter. Not over her. With her.
He told her his name and asked if he could help her.
She looked at him. “Doctor?”
He looked at me. I nodded.
“Yes,” he said. “Doctor. Can I help you?”
“Help. Please! Doctor.”
He lifted her. No hesitation. No spectacle.
I gathered our things with shaking hands. Took my son’s hand. Told him we were leaving. Promised I would explain later.
We left two days early. The disappointment and disbelief in the moment my son realized we were leaving was thicker than the sunscreen I had recently lathered on him.
He cried a heartbroken and visceral wailing the entire drive home. I cried too. But she was in the car. Kicking the seat. Hitting the window. But safe.
I will forever be grateful to that mom and her son who saved us that day.
A Hospital Bathroom
Another day, a hospital bathroom. Fluorescent lights. Too bright. Too loud. The kind of echo that sharpens everything.
We had prepared for weeks. Multiple appointments stacked together. I had brought support with me, two Board Certified Behavior Analysts and two Registered Behavior Technicians. People trained for this. People who knew my daughter and knew how to respond when things escalated.
The stalls in the bathroom were full. Just as we had waited unexpectedly for our next appointment, which had been delayed, now we were waiting again.
Then we weren’t.
In the blink of an eye, a paper towel holder torn from the wall. Hands reaching, not random hands but trained ones, moving quickly to block, to redirect, to keep her from hurting herself or anyone else.
Her screams filled the room,
bounced off tile and metal,
spilled into the hallway.
Women left quickly. Eyes wide.
I stood back because the safest thing I could do was not add another body into the equation. Because there were people there who knew what they were doing.
And still, it wasn’t enough to steady it.
The panic rose anyway. The scan for security. The calculation I could not stop.
She’s eighteen now.
What happens if someone with guns or tasers misunderstands this?
A nurse stopped mid-stride. She turned toward me, just close enough that I could hear her voice.
She took in the scene in a single sweep.
She didn’t rush. She didn’t freeze.
“How can I help?”
I tried to answer, but all that I could produce were quick fragments. “Autism. Appointments. Delayed. They’re her providers. She’s not a threat. Please don’t call security.”
She changed the question. She kept her calm.
“I can call your next provider and get you a quiet room?
I can check if your team needs anything?
I can get a wheelchair?
What would best help right now?”
Three options. Concrete. Contained.
Something my brain could hold.
She didn’t step over the people already doing the work. She didn’t assume control. She found the gap, and she filled it.
She called ahead. She stayed with us. Walked with us. Made it clear to anyone watching that this was understood.
We made it through the rest of the day because she stepped in and knew exactly how far to step.
A Gym
Basketballs echoing on hardwood. Sneakers squeaking. Laughter filling the giant space.
My daughter had just finished practice at a disability basketball group. Sweaty. Smiling. That full, unguarded joy that makes everything else feel worth it.
We were leaving with a rare feeling of success.
As we left the basketball court, we passed a man in uniform filling a vending machine.
I don’t carry cash.
We tried to redirect. Offered alternatives. Promised food.
Too late.
The shift was immediate.
My daughter’s body tightened, then released into aggression. Fast. Uncontained.
One staff member went to get the car. The other stayed with me. We moved in, trying to console, to block, to keep her from hurting herself or anyone else.
People slowed. Watched. Then moved on.
All but one.
A woman approached.
“Can I help?”
“We’re okay,” we told her. “We’ve got it.”
She nodded.
“How about I stay over here? Let me know if you change your mind.”
She positioned herself just far enough away not to crowd us. Close enough to matter.
Two security guards started toward us.
She stepped forward before they reached us. Spoke quietly. They stopped. Listened. Turned away.
She returned to her place. Still there. Holding the edges.
The car came. The wheelchair. We got her in. Got her out. Got home.
No escalation. No police. No hospital.
Just home.
Before we left, she came to my driver’s window. “You all okay now?” she asked.
We thanked her.
“Nonsense,” she said. “I didn’t do anything.”
But she had.
She held the line where we couldn’t.
Not everyone can help.
And if you can’t, that’s ok, and the viral post applies. Keep moving. Give space. Don’t add weight to a moment that already has too much.
But some people can.
They pause. Not too close. Not too far.
They take in what is happening without turning it into something it isn’t.
A question, asked without pressure.
A presence that doesn’t crowd.
A willingness to follow, not lead.
They see the edges of the moment and hold them steady.
Most of these moments pass in a blur. Noise. Movement. Heat. The feeling of being watched and wanting to disappear.
But the ones where someone steps in, just enough, stay.
They settle differently.
The sharp edges soften.
The panic loosens its grip.
The path forward becomes visible again.
Not because everything changed…
Because someone, briefly, stood with us in it.
