Not the Award. Luke.

A few weeks ago, I had the honor of attending the National Council on Severe Autism Conference (NCSA) in Washington, D.C. It was a gathering of hundreds of parents, caregivers, self-advocates, researchers, clinicians, specialists, and advocates speaking truth into the air and hoping it lands where it matters most: on the ears of legislators and policymakers.

The purpose, as is always the case in marginalized unseen communities, was simple and forever the opposite of easy.

To move our nation closer to an honest understanding of what profound and severe autism is, and to ensure that the support, actualized real support, we build is centered on the lives of these children and adults, their families, and the caregivers who sustain them every single day.

It was a room filled with people who understand this life not from theory, not through case studies, but from living it.

While there, I was deeply honored to receive the Amplifier Award for New Media for the INCHSTONES podcast.

Sharing the stories of caregivers and advocates has become one of the greatest joys of a motherhood journey that never in my wildest of dreams would have imagined with Milly and Mack. Every conversation reminds me that while our circumstances differ, there is a thread running through all of us: the relentless pursuit of a better life and increase the ability for shared connection & agency with those we love.

I’ve sat with this article for 22 days because something felt unfinished. I couldn’t quite find the point that was swirling in my mind. Read: tsunami, not hot tub, emotional weather.

Then, on my walk this morning, it came to me.

It wasn’t the award at all. It was not the connection to the other advocates, many of whom I have known virtually, and my God, was it incredible to look them in the eye and thank them for their leadership and presence. Jackie Kancir & Jill Escher, being in the presence of the advocate army you’ve built through your own journeys is nothing short of witnessing David meeting & beating Goliath every single day. Or perhaps a better analogy would be Michelangelo’s duty to reveal the Pieta. You lead by the INCHSTONES mentality, one chisel of your sharpened skill and presence and one revelation at a time.

It wasn’t even taking in their leadership gifts and conference production, if I’m being honest.

It was Luke.

A fellow mother and advocate, Christine Kincaid, was receiving her own award. Across the table from me sat her 24-year-old son, Luke, a young man with profound autism, the youngest of Christine’s children. He was positioned directly in line with the podium. As Christine walked to the front of the room and began speaking, Luke quietly lifted his iPad and started recording her.

No one asked him to. There was no prompt. In fact, the iPad was there most of the day playing a movie or not being fussed with at all.

He simply held it there, his eyes fixed on his mother with the most peaceful, unwavering gaze. His leg crossed, and while the live photo is the only thing to do this description justice, for a 24-year-old man with profound autism, boy did he record with the skill of a documentary cameraman.

I couldn’t stop watching him sit so at peace and subtle pride for his Mom. And in that moment, I wasn’t witnessing a young man recording an acceptance speech at all. Translation:

I was witnessing a son preserving a moment that mattered to him.

I don’t know what words Luke would use to describe his love for his mother and that’s the inherent point: he does not need them.

His attention said everything and it was one of the purest expressions of love I’ve ever witnessed.

And so many of us in that room have children like Luke. I often say that if I cannot be the one caring for Milly and Mack, I would choose another autism parent or advocate every single time in a heartbeat, even if they had never met M&M. They understand the delicate nature of this life. They understand the weight of it, the exhaustion, the vigilance, the consistency of uncertainty.

But they, mothers and families like mine, also understand something else (a conversation that I had with Chloe Barnes, The Aletheia Project, illuminated this.). They understand the extraordinary, quiet love these children allow us to give, and, just as importantly, the love they give back in a million different ways.

INCHSTONES was born from that reality.

Its trademark phrase, “inchstones over milestones”, has always meant more than celebrating small progress.

It is about recognizing the moments that change us and translating life’s most ordinary moments. Because those moments (an outstretched hand, a shared glance, a surprise moment of connectivity) are where the reality of profound disability & extraordinary responsibility somehow coexist with an almost intoxicating kind of love.

Luke lifting his iPad toward his mother.

A smile exchanged between two strangers.

A rose blooming on the side of the road that slows me down just enough to admire it before its thorn pricks my finger, reminding me to move a little more gently through the world.

These moments are everywhere. They always have been.

It just took children like mine to teach me how to see them.

As I left Washington, I realized I wasn’t carrying home an award.

I was carrying home the image of a son silently holding up his iPad for the woman who has spent twenty-four years holding up the world for him.

That single moment is now so beautifully permanent and acts as the pictorial evidence of the NCSA’s mission in my mind; it explained everything I have been trying to say with INCHSTONES all along.

Sarah is the writer of Inchstones: The #1 voice of autism mothers & caregivers of children with profound nonspeaking autism.