As a proud “special needs mom,” the recent headlines, interviews, press conferences, and never-ending social media commentary have left me more exhausted than usual. My Oura ring keeps asking why my stress levels have increased, and why my resting heart rate is way higher than normal.

The truth is, life with two kids with disabilities (and four total) has never been stress-free. It’s full of appointments, meetings, phone calls, and paperwork. There’s no way around it: this life is just more. But I’ve managed to make the most of it as a proud advocate, volunteer, and now as an entrepreneur who helps other families navigate this life they never expected for themselves and speaks to local healthcare professionals about best practices for special needs families.

It’s no secret that my son Sam is incredibly hard. He’s violent. He’s unpredictable. He’s rigid. He’s awkward. And he’s also a miracle baby – a 28-week preemie who was given zero odds of survival in utero when I was 17 weeks pregnant with him and his identical twin. Defying all odds and thanking God for medical and scientific advances, they both survived and we made it to 28-weeks. But then Sam got sick. Necrotizing enterocolitis. Late-onset group B strep. Sepsis. Meningitis. All of that led to hydrocephalus, brain injury, multiple shunt surgeries, a feeding tube… the list goes on.

I could give you the long version, but to get to the heart of it: by the time he was two, we were drowning. His behaviors intensified. We had welcomed another baby. And although Sam was already getting every therapy available, we were told he needed more. And more. And more.

At the time, we were living in Nebraska. Medicaid helped because of his feeding tube, but the services we were being told he needed weren’t covered unless we had a diagnosis. So I begged his pediatrician for an autism diagnosis. It took two years to get one because of surgeries, waitlists, and life.

To this day, none of us are entirely convinced it’s “true autism.” His behaviors are more likely rooted in brain injury than neurodevelopment. His identical twin does not share his diagnosis.

This is why, when I hear national leaders talk about curing autism or finding “the reason” behind it, it hits a nerve. Because for so many families like mine, autism isn’t just a label-it’s a lifeline. It’s how we get help.

When RFK Jr. talks about our children with disdain, it feels like eugenics. Like my son doesn’t fit the mold, and that’s not okay to some people. Maybe there is a reason for autism-mold, toxins, red dye, who knows. But what I hear in these rants is: we don’t want people with behaviors.

I’m not saying behaviors aren’t awful. I’d do anything to ease the hard parts of Sam’s life. But this path some are walking down – the path that starts with generalizing and shaming and blaming – is dangerous.

It’s offensive when people speak about autism and children like mine as if they’re broken. As if we all feel the same way about it. As if we’d all jump at a cure, no questions asked.

Here’s my truth:
Yes, I’d take away Sam’s autism in a heartbeat if it meant he’d suffer less.
And until you’ve laid awake wondering who will care for them when you’re gone… you don’t get to have an opinion on that.

Watching my other kids grow up alongside their sibling with a disability is heartbreaking and beautiful all at once. It’s not always fair, but it’s forming them into people who lead with heart, who stand up for others, and who understand the world in a deeper way.
This life is heavy. But it’s also made us strong and loyal. We take nothing for granted.

The truth is, our story (like so many) isn’t just one of tragedy or one of inspiration. It’s both.

So please, stop talking about our children like they are “less than.”
Stop pretending you understand what families like mine want or feel.

If you really care?
Don’t talk about curing autism-help us.
Give us more supports.
Don’t take away Medicaid – it’s our lifeline.
Pay respite workers more.
Don’t scare away doctors-they’re who we rely on.
Invest in mental health professionals.
Push for better policies, not harmful rhetoric.

To the few who do support us-who see our whole story, not just the hard parts-thank you. You are a gift.

And to everyone else: where is your empathy?
We were doing so well for a while. More understanding. More inclusion. More awareness.
Now it feels like the tide is turning, and not in a good way.

Please don’t let fear win. Don’t let cruelty take over where compassion used to live.