Inchstones by Sarah

09/24/2026

The meltdown is visible.

The pain, exhaustion, sensory overload, and unmet needs behind it often aren’t.

Caregiver observation can help us look beyond the moment. They are often the best resource and expert to start looking to the root cause.

08/31/2026

I’ve learned as much about Milly & Mack from the things that didn’t work as I have from the things that did.

The outing they hated. The therapy that wasn’t right. The approach that helped one child and did absolutely nothing for the other. The medical intervention we tried thoughtfully, watched carefully, and then had to decide whether it was actually helping.

I don’t think trying means blindly believing something will work. And I don’t think stopping means you failed.

Sometimes the answer is no. That’s information too.

But then you get a day like yesterday. You try something new and suddenly your kids are completely, unmistakably IN IT. Happy. Engaged. Wanting more.

Those days are a high I can’t adequately explain.

So yes, I’ll keep questioning assumptions about profound autism. I’ll keep trying things. I’ll keep changing my mind when the evidence in front of me asks me to.

Because the goal was never to be right.

The goal is to keep learning Milly & Mack.

And yesterday? We learned they freaking LOVE Dopamine Land. 😂❤️

08/26/2026

If you know that look, you know.

And this is my boy, Mack. He and his sister Milly both have profound non speaking autism.

The tiny check-in. You saw it. The sparkle. The split second of “are you seeing what I’m seeing?” connection.

These are the moments that would be so easy for someone else to miss.

But you don’t.

And that’s the whole thing about . 💛

08/19/2026

The IACC needs our support. 2-3 sentences sent to [email protected]

Profound autism deserves this research proposed. Let’s show our support!

08/15/2026

And in the 2.5 minutes I have during the Saturday-morning chaos of trying to get out of the house solo with a harness for Mack, AAC devices, pull-ups, backup chargers, iPhones, and making sure everyone gets enough protein to actually fuel the swimming and hiking we’re about to do…I’m asking you to take a few minutes, too.

Please join me in submitting a public comment to the IACC at the NIH in support of their working draft.

It’s 300+ pages, but here’s what I believe you need to know:

For the first time, we have a proposal to study autism in a way we have not done before as a nation. To investigate the root causes and underlying conditions affecting our most severely impacted children and young adults with profound autism, while centering the lived experiences and needs of these citizens and their families.

It’s time.

If not now, when?
If not us, who?

Screenshot my stories for a template you can quickly fill out and email directly to the IACC. They are accepting public comments through August 20.

Send your completed template or your own comments in support of the proposal to:

[email protected]

A few minutes. One email. Make your voice count.

08/12/2026

What if the question isn’t “What’s the diagnosis?” but “What’s driving it?”

In this INCHSTONES podcast conversation with Dr. John Gaitanis, we talk about a root-cause approach to autism care, the importance of seeing the whole child, and why parents’ instincts matter so much. Specifically, we dive into leucovorin, gut biome and mitochondrial cocktails as “low hanging fruit” that can help improve core symptoms for a child to connect and live fully. I’ve seen it with my own eyes, experienced it as a mother.

In partnering with Meadow Health as a parent advisor, I could not be more excited to know that clinicians like Dr. G are advocating and treating our children in this way.

Because when we look at the brain, gut, body, and family together, we open the door to real healing.

08/08/2026

Latest Substack ✨

I traveled to Capitol Hill to advocate and receive an award. I came home thinking about Luke, a 24-year-old man with profound autism and his unspoken act of love.

08/06/2026

Hi 👋🏼 I’m Sarah, Mama to 2 kiddos with profound, nonspeaking autism, Mack (8) and Milly (11).

Isn’t it that we were chosen to mother these babies of ours, Joan of Arc’ing our way through this one life we get to call ours?

No, it’s not easy.
No, it’s not luxurious.
Yes, it is yours.

May you find the chic and wild and fun and connection to your people every single day. 💛

07/28/2026

Mack son Mack is 8yrs old and has nonspeaking autism. He needs 24/7 care.

I used to look at pictures like this and think about everything that wasn’t happening yet. Nothing here would have seemed remarkable to the outside world. Yet these are the moments upon which everything else rests.

I’ve come to believe that our lives are shaped less by the moments history remembers than by the ones almost no one notices.

That is what an is.

Perhaps we’ve mistaken spectacle for significance. The smallest movements of the heart have always been the ones carrying us home.

07/22/2026

Non-speaking autism vocal play. Merlin Bird ID couldn’t identify this one… but she’s my favorite songbird🐦🎶

If we only listen for words, we miss the person’s melody.