It is August 29, 2026, and my children are 13, 11, and 8. My younger two, Milly & Mack, both have profound, non-speaking autism and whole-body apraxia. Fourteen years ago, if you had asked me what I thought this particular season of motherhood would look like, I probably would have said something about living near the beach each summer or adventuring in the mountains with a brood of 3+ kids, comfortably inside the “good old days” without yet knowing they were the good old days. I imagined being the “it house,” with carpools, sports, teenagers, sandy towels, and maybe becoming school board president or directing a children’s community choir because I had volunteered for one small thing and somehow ended up in charge. (That trajectory was the norm.)

I did not imagine the National Institutes of Health. (The What?)

But this past Thursday morning at 4 am EST, coordinating specialized child care, I drove four hours to Rockville, Maryland, to sit in the room as the Interagency Autism Coordinating Committee (IACC) debated and ultimately voted to pass its Working Draft Strategic Plan for autism research. It was my third trip to our nation’s capital this summer for work and advocacy that grew directly from raising two children with profound, nonspeaking autism. Somewhere along the way, motherhood led me to build INCHSTONES around the voices of mothers and caregivers, and now that work is bringing me into rooms I never knew existed, much less imagined I would have reason to enter.

I spent more moments than I should have on Thursday looking around thinking, How the heck did I end up here?

I have never been in a room so dense with people whose lives have intersected with mine in this very particular way and who have taken what they know, through medicine, science, parenting, autism itself, and used it to keep asking better questions. I listened to discussions about profound autism, regression, communication, medical complexity, motor planning, lifelong care and caregiver experience. Nonspeaking advocate and Exec Director of Communication4All, Elizabeth Bonker spoke about the importance of centering both profound autism and communication access, two things I have never understood why we insist on separating. Dr. Sylvia Fogel, the IACC chair and herself the mother of a child with profound autism, asked perhaps the simplest and most important question of the day: Is the amount funded actually aligned with the actual need?

For once, I wasn’t listening to people debate whether families like mine belonged in the autism conversation. We were already in it.

More than 5,000 public comments were submitted during this process, 4x the number of public comments over the previous comparable comment period. Legitimate questions remain about whether comments submitted toward the end of the extended period received adequate consideration before the vote, and I believe those questions deserve answers. We can demand a better process without missing what happened substantively inside that room.

Because something is moving.

At one point Sylvia said, “Delay is not neutral.”

I wrote it down immediately, looked next to me at Dr. Dana Johnson to my left, and shared the slight nod in shared acknowledgment.

There are policy reasons to debate that sentence. I heard it as a mother.

Delay has never been neutral in my house.

And strangely, it wasn’t until the next morning at Trader Joe’s that I understood exactly why that sentence had followed me home and why I had arrows and highlighted it as the phrase of the day for me.

I was standing in produce when I noticed a mother and her son. He looked about Mack’s age. She was holding one of those impossible thin plastic bags while he put avocados into it. Maybe they were talking about which ones were ripe, educating her son on produce selection. (I still remember my own Mom showing me how to tell if a cantaloupe was ripe - sweet and fragrant at the bottom end.) Maybe she told him to grab another. Those details don’t really matter. What matters and what I’m sharing here was how easy it looked.

Mother and son, standing in a grocery store, doing something together.

Because what I was watching was a luxury.

Not the avocados. Not Trader Joe’s. Not even grocery shopping with your child. I love taking my kids to Trader Joe’s.

The luxury of the other mom and son was the exchange itself. The effortless back-and-forth between two people who love each other and can reach one another without having to think very hard about how.

I don’t think I understood how extraordinary that was before Milly and Mack.

Earlier that week, I took them to the very same Trader Joe’s. We lasted about four and a half minutes, which I believe qualifies as our personal best. We also didn’t knock over 21400 clementines which we have done more than once. They love apples, so I let each of them choose one. I took a picture of them standing in front of the display considering their options.

Someone else might see two kids picking fruit.

I see participation. I see choice. I see four and a half minutes in a grocery store that worked.

This is why I care so much about what happened at the NIH.

I don’t want science to understand my children because I reject them as they are. I want science to understand them because I know them. I know how much is there, and I want fewer barriers between them and the rest of us.

I know Milly climbing onto my bed after her bath with wet hair, leaning into me while we sing, her face changing because she knows exactly what part of the song is coming next. I know Mack at the car wash turning toward me with that unmistakable Do you see this? look because he wants me inside his delight. I know that I can make him collapse into a little-boy cackle by dramatically performing “Not by the hair of my chinny chin chin,” either because he appreciates the alliteration or because my theatrical abilities have been criminally underutilized.

Anytime I get access to either of them, I know what a gift it is.

And, really, the same is true of their typically developing teenage sister, although access to her currently sounds more like, Mom, can you put $25 on my Greenlight card? We’re going to Starbucks & Sephora.

Still counts.

Three children. Three very different ways of reaching for me.

This is what profound autism has made almost unbearably visible to me: how much of human life consists of tiny exchanges we barely notice. A joke. A look. A song. An avocado passed from one hand to another. To know someone and be known by them. To reach toward another person and have them reach back.

And once you understand the value of that, it becomes very difficult to believe we have asked enough questions.

I want science to keep asking why some children regress. Why some cannot reliably coordinate their bodies despite appearing to understand. Why epilepsy, gastrointestinal disease and other medical problems travel so frequently alongside autism. I want communication studied aggressively. I want genetics, metabolism, mitochondria, immune function, and the environment investigated wherever rigorous science takes us. I don’t need to know the answer before believing the question deserves to be asked.

For too long, “that’s just autism” has been allowed to end conversations that should have begun there.

So when I heard delay is not neutral, I thought about all the ways families have waited. For communication. For doctors. For research. For appropriate schools. For someone to investigate regression. For motor difficulties to be understood. For caregiver observations to be treated not as scientific proof, because they aren’t, but as information capable of generating scientific questions. And I thought about parents of profoundly autistic adults who are growing older while wondering who will understand their children well enough to care for them when they are gone.

That is why I was grateful to be there when the Working Draft passed.

It isn’t perfect. The process wasn’t perfect. It won’t change what breakfast looks like in my house this morning.

But it moves questions families like mine have carried privately into rooms with the resources to investigate them.

And I have learned not to dismiss movement because it isn’t yet the destination.

IACC committee member and powerhouse Autism Mom, Tracy Slepcevic, wrote about the vote this week in a way that captured what I think matters most about this moment: “It doesn’t have to provide every answer today. It needs to create a federal system willing to look for the answers and be accountable for what happens next.”

Exactly.

I don’t need the IACC to tell me that it knows what is happening inside my children. I need our federal research institutions to remain curious enough to keep looking, humble enough to admit what they do not yet know, and urgent enough to understand that families are living the consequences of those unanswered questions right now.

And I have learned not to dismiss movement because it isn’t yet the destination.

Fifteen years ago I thought motherhood might make me school board president. Instead, Milly and Mack led me to INCHSTONES, and somehow INCHSTONES led me to the NIH.

Then the NIH sent me home to the real point of it all: a little girl who sings with me, a little boy I can reduce to hysterics with chinny chin chin, and a teenager who apparently requires Starbucks & Sephora to maintain our relationship. (read: plus weekly mama & daughter walks to discuss life…and Starbucks & Sephora.)

All of it is connection.

The inchstones aren’t consolation prizes for milestones we didn’t get. They are the moments when another human being lets us in. Maybe that is what so much of life comes down to: being let into another person’s world, and knowing they have let you in.

On Thursday, sitting inside the NIH, I felt something like that happening for families like mine too. Our experiences were getting farther inside the rooms where decisions are made, we are being let in. To make progress on how our children can let us in.

The Working Draft passed. And an enormous amount of work still remains.

But on this Saturday morning, I am allowing myself to notice the movement. After so much waiting, we are finally asking the right questions in rooms that can do something about them.

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

I am the mother of two children with profound, nonspeaking autism. I live this life twice over: two children who cannot reliably tell me when they are in pain, what has changed inside their bodies, or what they need from the people responsible for their care. I also have a typically developing teenager, which means I have the wild and unusual privilege of seeing childhood unfold along very different neurological paths under the same roof.

I do not write about profound autism from a distance. I live it x 2. A daughter and a son.

On August 21, the National Institutes of Health announced that pediatric neurologist Dr. John Gaitanis had been selected to lead the Eunice Kennedy Shriver National Institute of Child Health and Human Development, or NICHD. Two days later, he assumed responsibility for an institute with an annual budget of approximately $1.7 billion, a staff of roughly 1,100, and some 2,300 research grants and projects across the United States and internationally. NICHD’s mandate is definitively enormous: maternal health, child development, reproductive health, intellectual and developmental disabilities, and research intended to understand not merely how conditions present, but what causes them and how medicine might prevent, treat, or ameliorate their effects.

I have interviewed Dr. Gaitanis on the INCHSTONES podcast, and I should say plainly that I have enormous respect for him. I have come away from those conversations believing he possesses one of the most formidable clinical minds I have encountered in the world of profound autism. But his appointment matters to me not for brilliance in the abstract. It is where that mind has spent the past three decades. Where his feet and heart have been.

Gaitanis is not arriving at NIH after a career spent primarily examining autism from datasets or conference rooms. He is a pediatric neurologist. He trained at Brown, the University of Rochester, Boston Children’s Hospital and Harvard Medical School, and Beth Israel Deaconess. He has led child-neurology programs at Tufts and Brown. His career has been spent with children whose neurological lives do not fit neatly into one diagnostic box: epilepsy, autism, developmental regression, complex neurodevelopmental conditions, communication impairment. NIH highlighted his work advancing individualized care and approaches that support the health, communication, autonomy, and dignity of nonspeaking autistic people when announcing his appointment.

I have gone from being a mother who did not even know what ABA was when her first child was diagnosed to someone deep in the advocacy world. For years, I have watched the public conversation about autism become increasingly detached from the children whose disability is most profound. Autism can now describe an extraordinary range of human experience. Somewhere underneath that enormous diagnostic umbrella are children like mine: profoundly autistic, nonspeaking, living with whole-body motor-planning challenges and dependent upon other people for much of the architecture of daily life. There are families managing epilepsy, dangerous elopement, severe sleep disturbance, gastrointestinal problems, self-injury, feeding disorders, intellectual disability and communication barriers that make something as fundamental as telling another human being “I am in pain” extraordinarily difficult.

These children are looping their favorite shows because it’s the only predictability their nervous system can handle. These children require doctors. Lots and lots of doctors. More specifically, they require doctors who remain interested after the diagnosis has been made.

That is what has struck me most in my conversations with Gaitanis. He does not seem intellectually satisfied by the word autism when a child sitting in front of him is also experiencing neurological or medical problems. The diagnosis describes something important, but it does not necessarily explain everything happening inside that particular child’s brain and body. The clinical work begins there rather than ends there.

The NICHD supports research into autism susceptibility genes, neuropathology, endocrine, metabolic, and immunologic pathways, interactions between environmental variables and genetic susceptibility, interventions, prevention, and the etiology and treatment of conditions that commonly occur alongside autism, including epilepsy. NICHD also explicitly acknowledges developmental regression: some children lose language, play, or social skills they previously possessed, and researchers still do not know why some children regress or which children are likely to do so.

That last sentence should stop us.

We still do not know why.

For mothers of children with profound autism, those four words contain years of our lives. A typical life is spent wrangling with uncertainty because life is one journey into the unknown let alone that contemplative force of compounded uncertainty for families like mine. And it is why the person directing research matters.

NICHD’s own description of the director’s office says that it provides overall leadership, planning, direction, coordination, and evaluation of the institute’s research programs and helps determine how scientific information reaches clinicians, researchers, and the public.

And I want someone in that chair who has actually met these children.

That last point is inseparable from the mission of INCHSTONES.

I have spent years arguing that mothers and caregivers of people with profound disabilities possess a form of knowledge our institutions chronically undervalue. I do not mean that maternal intuition should outrank science. I mean something both more modest and, I think, more consequential: maternal intuition should be allowed to provoke science.

A mother who says, “something changed in my child,” has not established causation. She has identified a question.

A caregiver who reports an unusual pattern has not completed a randomized controlled trial. She has supplied an observation.

The scientific response should neither be you must be right nor you are only his mother.

It should be: Tell me exactly what you saw. Bring me your care logs. Show me your data.

Then investigate it.

This is particularly important in profound autism because the ordinary hierarchy of medical evidence becomes complicated when the patient cannot reliably provide conventional self-report.

Medicine advances when those forms of knowledge meet.

And that makes Gaitanis’s appointment especially consequential at this particular moment at NIH.

The agency has begun an ambitious Autism Data Science Initiative, investing more than $50 million across 13 projects examining autism prevalence, etiology, genetics, environmental exposures, biology, treatments, services, and meaningful outcomes. Some of the projects involve enormous datasets; others move into human neural cells, organoids, biospecimens, maternal-health information, environmental exposures, and longitudinal clinical records. Two centers have been funded specifically to replicate and validate findings produced by the other teams.

Gaitanis did not create that initiative. NIH selected its projects before his appointment, and the initiative spans multiple NIH institutes. It would be inaccurate to suggest otherwise.

What matters is what comes next.

We now have a significant federal research effort willing to ask large questions about autism at the same moment that one of NIH’s most important child-health institutes is being led by a physician whose career has been spent close to the complicated neurological reality those questions are meant to illuminate. As a reminder, intellectual rigor and intellectual curiosity are not competing values, people. (And neither are acceptance and medicine.)

I can love my children without reservation and still want to know why their neurological development unfolded as it did. I can respect their dignity while wanting medicine to alleviate the things that make their lives harder. I can believe profoundly in their intelligence while asking why their bodies cannot always execute what they appear to understand. I can celebrate every inchstone while still wanting researchers to understand the barriers that make those inchstones so difficult to reach.

We need people willing to say we don’t know yet without treating those words as permission to stop looking.

That is why I am hopeful about Dr. John Gaitanis at NICHD.

Not because one brilliant physician will solve autism. He won’t.

I am hopeful because there is something profoundly important about placing a doctor who has spent decades looking at the individual child in a position to influence which questions American child-health research is brave enough to pursue.

Follow the evidence wherever it leads.

Let mothers tell researchers what they have observed without requiring science to accept those observations untested.

Let’s study regression, metabolism, immunology and genetics. Let’s study the enviroment and let’s study how they interact. Please, let us study communication in people whose speech does not reveal everything they know.

Study the children who are hardest to enroll, hardest to test, and easiest to leave out.

(And when the evidence contradicts what any of us expected, publish that too!)

The families I know are not asking NIH to tell us that we were right all along.

We are asking the country’s most powerful medical-research institution to remain curious enough to find out.

For the first time in a long time, I see reasons to believe the people being placed in the room understand the difference.

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

Stacey explains why parenthood can expose coping strategies and patterns that may have been operating quietly for decades. Perfectionism. People pleasing. Conflict avoidance. Caretaking. Deprioritizing yourself to meet everyone else's needs. Those adaptations may once have served a purpose. But combine them with the demands of special needs parenting, nonverbal autism, intensive caregiving, and chronic uncertainty, and caregivers can eventually feel like a shell of who they once were. Stacey introduces the idea of the “invisible backpack” we each carry: our lived experiences, the meaning we've assigned to them, what we've learned to believe about ourselves and others, and the coping strategies we've developed along the way. Sometimes we're still carrying things that no longer belong in the backpack.
Sarah and Stacey explore what happens when those old patterns collide with the extraordinary demands of raising a child with disabilities—and why caregiver wellness isn't another responsibility parents should feel guilty about failing to accomplish. It's part of sustaining yourself for the long haul.

They also explore parts work and polyvagal theory, including how Stacey uses these frameworks with clients to understand stress responses, anxiety, overwhelm, shutdown, perfectionism, people pleasing, and the feeling so many adults describe as: “I don't even know who I am anymore.”

And then there's co-regulation. Sarah shares how raising children with profound support needs has forced her to recognize something uncomfortable but powerful: her children experience her regulation, too.
The morning routine still happens. The pull-up still needs changing. Teeth still need brushing. Transitions still need navigating. A parent's internal state doesn't erase the child's disability, but it can influence the environment in which both parent and child are trying to function. Stacey describes this as an invitation to stop believing the only solution is changing the child. Sometimes the environment changes when we change how we enter it.

This is not another conversation telling exhausted special needs parents to meditate, take a bath, or add one more item to their self-care checklist. It's a conversation about understanding what's happening inside you. Because caregiver burnout isn't always evidence that you're incapable of carrying your life. Sometimes it's information about how long your body has been carrying it.

Learn more about Stacey Uhrig and Flip Your Mindset, including her work around nervous system regulation, parts work, trauma, and personal transformation.

Subscribe to the INCHSTONES Podcast for honest caregiver stories about nonverbal autism, special needs parenting, profound autism, caregiver burnout, disability, communication, family life, and the realities of raising children with significant support needs. 

Years later, Len sees that differently. He and Sarah explore why curiosity, humility, critical thinking, and open-mindedness can become some of the most important tools in special needs parenting. Parents don't need to know everything about autism. But they can learn to observe their child carefully, ask better questions, evaluate options thoughtfully, and become active participants in decisions about their child's health, communication, regulation, education, and support.
The conversation goes deeper into root cause thinking and why Len believes parents should keep asking why. Why is communication difficult? Why is my child dysregulated? Why are certain behaviors occurring? Why isn't something working?

For Len, root cause thinking isn't about finding one universal explanation for autism or one treatment that works for every child. It's about remaining curious about the individual child standing in front of you and making thoughtful decisions about where to focus limited time, energy, and resources.

Sarah and Len also talk about something especially complicated for families navigating nonverbal autism, profound support needs, and special needs parenting: Can you fully accept your child as they are while still wanting more for them?

Len shares candidly that he once confused acceptance with giving up. Looking back, he realized he was deeply attached to the future version of his son he hoped would emerge rather than fully accepting the child in front of him. Eventually, he discovered that the two ideas didn't have to compete. A parent can completely love and accept their child today while continuing to pursue better health, communication, regulation, connection, and quality of life.

They also examine the parent's side of the equation.
Caregiver stress isn't only about finding the next autism therapy or intervention. Sometimes the most important change begins with how a parent navigates uncertainty—their beliefs, nervous system, decision-making, expectations, and ability to stay grounded when they don't know what happens next.
And that may be one of the greatest lessons of caregiver stories like Len's: parents don't need certainty to move forward.
They need curiosity, discernment and the humility to change course when new information emerges.
And they need to recognize that the years they've spent observing their child have given them knowledge that deserves a place at the table.

Len Arcuri is a Private Strategic Advisor to parents navigating autism and other complex developmental challenges. After more than two decades in financial leadership as a CPA, CFO, and Six Sigma Master Black Belt, his son's autism diagnosis redirected his life's work. Drawing on nearly two decades of lived experience and more than 300 conversations with leading experts as host of the top 1% Autism Parenting Secrets podcast, Len helps parents think clearly, make better decisions, and lead with greater confidence. He believes parents are the single greatest force multiplier in a child's life.

Resources
Listen to Len Arcuri's Autism Parenting Secrets podcast and learn more about his individualized advisory work with autism parents. All of his work can be found here: 
https://allinparent.com/
https://elevatehowyounavigate.com/

Subscribe to the INCHSTONES Podcast for more caregiver stories, conversations about nonverbal autism, and honest discussions of special needs parenting, profound autism, communication, caregiver mental health, therapies, advocacy, and raising children with significant support needs.

At the center of the conversation is the Interagency Autism Coordinating Committee (IACC) and its working draft for the next federal autism strategic plan. Sarah, Tyler, and Olivia discuss why the proposal has generated such intense debate—and why families raising children with profound autism believe this moment could help bring greater attention to a population they say has too often been missing from autism research.

But this conversation goes far beyond one government document.
What should autism research be trying to understand? Should researchers investigate causes, regression, medical complexity, communication challenges, gastrointestinal problems and other co-occurring conditions? How do we improve quality of life for autistic people today while still investigating the most disabling presentations of autism?
And perhaps most importantly: who speaks for autistic people who cannot advocate for themselves?

Tyler and Olivia discuss the tension between autism self-advocacy and parent advocacy, including their concern that conversations about autism acceptance can sometimes fail to represent families living with profound disability. They argue that acknowledging severe disability does not diminish an autistic person's dignity—and that accepting an autistic person and wanting to understand the causes of their suffering are not mutually exclusive.

Olivia also shares the reality behind her advocacy: she is moving to another state seeking better care for her daughter while leaving her older daughter behind. Her family's experience opens a larger conversation about autism sibling dynamics, caregiver stress, profound care needs, and what happens when today's siblings become tomorrow's next of kin.

Tyler shares his own family's experience trying to understand his son's recurring gastrointestinal problems and the exhaustion of parents being told, once again, that they are essentially responsible for experimenting, observing, adjusting, and trying to determine what helps their child.

The three also confront a difficult reality of nonverbal autism and special needs parenting: much of the labor and suffering involved is invisible to people who have never lived it. Families may navigate dysregulation, communication barriers, medical issues, hypervigilance, sibling impact, and uncertainty about lifelong care—while simultaneously being criticized for talking publicly about those realities. This isn't a conversation asking for pity.
It's a conversation asking for visibility, research, better systems, and the willingness to remain curious about what we still don't understand about autism.

As Sarah says near the end of the episode: Severity is not the opposite of dignity.

Families can fully love and accept an autistic person while still asking why they are suffering, what medicine may be missing, and what science still needs to understand.

In This Episode
00:00 — Why Sarah, Tyler and Olivia came together for this conversation
01:55 — What families should understand about the IACC working draft
03:25 — “Autism is not a reason to stop looking”
03:50 — Profound autism and representation in autism research
06:35 — Why visibility matters for families with significant support needs
07:05 — Olivia's decision to move states seeking better care for her daughter
08:45 — Profound autism, terminology and representation
09:50 — Who advocates for autistic people who cannot self-advocate?
14:05 — What the proposed autism research framework could change
16:40 — Biomedical research and why families want researchers to keep asking questions
18:20 — What parents and allies can do now
23:00 — Reorienting autism research instead of repeating old systems
25:25 — Medical complexity and investigating what may be affecting autistic children
26:55 — Tyler's son's gastrointestinal issues and the exhaustion of figuring it out yourself
29:10 — The physical and emotional health of autism caregivers
30:50 — What happens to siblings when parents are gone?
32:25 — Autism sibling dynamics and future caregiving responsibilities
33:30 — Why families share the realities of profound autism publicly
36:55 — What allies need to understand about special needs family life
37:40 — Tyler's call to action: systems must change to produce different outcomes
39:30 — Olivia's call to action: “Nothing changes if nothing changes”
40:35 — Why severity and dignity can coexist

Resources
Read the Interagency Autism Coordinating Committee (IACC) working draft and learn more about opportunities for public participation in federal autism research and policy.

Follow Tyler Hudson and Olivia Rojo for their perspectives on profound autism, caregiver advocacy, disability, and family life.

Subscribe to the INCHSTONES Podcast for caregiver stories, honest conversations about nonverbal autism, and the realities of special needs parenting, profound autism, disability caregiving, communication, research, family life, and raising children with significant support needs.

Last week, I wrote about this for the National Catholic Reporter’s Soul Seeing series. In Autism and the Holiness of Now, I tried to describe how Milly and Mack have changed my understanding of presence. Before them, I thought of presence as a spiritual discipline: Put down the phone. Slow your breathing. Notice the light. Be grateful. It belonged to the category of practices I hoped would make me a better person.

Caregiving made presence less aspirational. It became a condition of loving my children safely and well.

Over time, that enforced attention began to alter the rest of my life. I became a better listener. I noticed more quickly when a friend said one thing and felt another. I grew less interested in the conversation I was rehearsing in my head and more available to the one actually taking place. This is one of caregiving’s quieter mysteries: The attention you give because someone requires it eventually changes the way you see everyone.

Then, on Sunday morning before my home woke up, I heard the Gospel of the Canaanite woman.

The story, in Matthew 15:21–28, is brief and difficult. A woman approaches Jesus because her daughter is suffering. She cries out for mercy, and at first he does not answer. Irritated by her persistence, the disciples ask him to send her away: “She keeps calling out after us.”

I have heard this passage many times. This year, I heard the disciples differently.

Their complaint has the familiar sound of an institution encountering a person who will not be efficiently processed. The woman has become a disruption. She is loud, repetitive and unwilling to accept the boundary placed in front of her. The disciples do not ask what her persistence might reveal. They want relief from the discomfort of hearing it.

I do not pretend that her circumstances and mine are the same. But I recognize the posture of a mother who keeps returning to a place of authority because someone she loves needs what the existing system has failed to provide. I know the strange combination of hope and humiliation involved in asking a stranger to look again at your child—to understand that the standard answer does not fit, that the ordinary accommodation is not enough, that what appears unreasonable from the outside may be the bare minimum required for safety or dignity.

Parents of children with significant disabilities become fluent in these encounters. We have them in schools and hospitals, with insurance companies and state agencies, in rooms where decisions are made by people who may never have met anyone like our children. We learn to explain the same reality repeatedly, changing the vocabulary but not the plea: This is who my child is. This is what my child needs. Please do not confuse the complexity of meeting those needs with permission to ignore them.

The repetition is exhausting. It can also make a parent look difficult. But withdrawing quietly carries its own danger. If I disappear from the conversation, the reality of my child may disappear with me.

This is why I have been thinking about the Canaanite woman while reading about the Interagency Autism Coordinating Committee, or IACC, the federal advisory body that helps shape national priorities for autism research, services and policy. The committee has released a 336-page working draft of its 2026–2028 Strategic Plan. After advocacy groups objected to an initial four-day review window, the public-comment period was extended to August 20.

Strategic plans are not natural objects of contemplation. They are long, technical and easy to regard as remote from family life. But documents like this determine which questions the federal government treats as urgent, which populations researchers are encouraged to include and which outcomes are deemed worth measuring. Eventually, the language of a plan can become the architecture of a grant, a study or a service. A family may feel its consequences years later without ever knowing where the chain of decisions began.

For families like mine, one question shadows the entire document: Will people with profound autism be fully visible in the research agenda meant to serve the autism population?

Historically, they have not been. Autism studies often depend on participants who can tolerate unfamiliar environments, follow complex instructions, complete standardized testing or describe their internal experiences. Those requirements make research more manageable. They also tend to exclude people with intellectual disability, limited or no spoken language, severe self-injury, epilepsy, sleep disorders and other complex medical or behavioral needs. One analysis estimated that only 6 percent of participants in autism research had intellectual disability, despite the substantial overlap between autism and intellectual disability.

The exclusion is not always the result of indifference. Sometimes it begins with a practical problem. A person cannot tolerate an MRI. A standard cognitive test cannot capture what she knows. A questionnaire assumes that speech is the most reliable form of communication. The research team lacks the staffing, time or expertise to adapt its methods. Each decision may be defensible on its own. Accumulated across years and institutions, however, those decisions create a body of autism research that does not adequately represent some of the people most profoundly affected by the condition.

Their absence then compounds itself. When people with the highest support needs are missing from studies, scientists know less about their medical conditions, their communication, their dangerous behaviors and the interventions that might improve their lives. The lack of evidence makes it harder to design services or justify funding. Families are left to navigate problems that the research enterprise has not made central enough to understand.

The new IACC draft gives me some reason for hope. Questions families have carried for decades appear more clearly within the federal frame: How should research address severe self-injury? How can communication be measured when speech is not the right measure? What medical conditions accompany the most disabling forms of autism? What becomes of children who need round-the-clock care when they reach adulthood and who will care for them when their parents no longer can?

Congress has directed the National Institutes of Health to ensure that autism research includes the entire autism population, explicitly including people with profound autism. The draft suggests that a boundary around what counts as central to autism research may finally be shifting.

But recognition in a document is not the same as commitment. Profound Autism Alliance has pointed out that although the term profound autism appears dozens of times in the draft, the plan does not give this population a dedicated section, budget line or measurable goals. Naming people matters. So does attaching responsibility, money and a way to know whether anything has changed.

This tension, between progress and insufficiency, is what brings me back to the Gospel.

The Canaanite woman does not prevail because institutions are always wrong or because persistence is itself proof of righteousness. Not every demand is wise, and no system can respond to every claim exactly as it is made. What her insistence reveals is more unsettling: A boundary that appears coherent from the inside may look very different when someone harmed by it is standing before you.

Sometimes the person experienced as an interruption is carrying information the institution needs.

Profound-autism families have been carrying such information for a long time. Our children expose the limits of research tools built around speech, compliance and conventional measures of cognition. They expose the limits of service systems that assume progress will lead steadily toward independence. They expose the fragility of policies that depend on parents providing skilled, round-the-clock care indefinitely and without collapse.

Our children make the work harder. Research costs more when protocols must be adapted. Services cost more when a person requires lifelong support. Policy becomes more complicated when independence cannot be the only respectable outcome. But difficulty cannot be allowed to harden into invisibility.

The profound-autism community is not asking researchers to turn away from anyone else on the spectrum. We are asking whether a spectrum this wide can be understood by disproportionately studying those easiest to recruit, test and interview. We are asking the autism research system to examine the places where its methods have quietly determined whose life is legible.

Caregiving has taught me that love often begins where a plan stops working. The loving response is not to pretend the plan was worthless; it is to recognize that the person in front of you matters more than your allegiance to it. People, ideas and things, always in that order.

This is what presence has come to mean for me. It is not simply mindfulness or gratitude. It is a willingness to let reality revise me and to notice when the framework I brought into a room is too small for the person standing there, and to enlarge the framework rather than diminish the person.

That is also my hope for the IACC plan. I hope researchers test its assumptions. I hope autistic people across the spectrum are heard. And I hope families raising children like Milly and Mack use the public-comment period to describe what no committee can learn from data alone: what it means to build a life around needs that many of our institutions still treat as peripheral.

Comments must be submitted by Thursday, August 20, 2026, at 5 p.m. Eastern. Families can review the advocacy priorities and find submission information here, or write directly to IACCPublicInquiries@mail.nih.gov

The mother in Matthew’s Gospel keeps calling out because silence would abandon her daughter to suffering. The disciples hear a nuisance. She knows she is carrying a truth they have not yet made room to receive.

My children have taught me to pay attention at precisely that moment: when an interruption begins to reveal where the work actually is, for all of us.

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

Sarah and Jacqueline also discuss the enormous importance of swimming and water safety for autistic children, including the elevated risk of drowning that helped inspire Jacqueline's novel. Their conversation moves beyond statistics, though, into the sensory and emotional experience of water—and the connection, regulation, and joy that can sometimes exist there.

They also explore caregiver stories, maternal identity, invisible labor, the desire to control every variable, and the difficult practice of allowing other people to help. Jacqueline shares one of the central realizations she had while developing Leo: difference does not automatically mean something needs to be fixed. A child's challenges and strengths can coexist, and autism cannot be reduced to one universal experience or one universal solutioAt its heart, this conversation is about support—not saving someone by changing who they are, but becoming the person who remains beside them while they discover what they're capable of.
In This Episode
01:30 — Why Jacqueline chose fiction to tell stories that matter
03:00 — Writing an autistic teenager instead of a young autistic child
05:00 — The “services cliff” after high school and preparing for adulthood
06:00 — How much support is too much—or not enough?
07:45 — Why one person believing in a child can change everything
09:45 — Autism, swimming, water safety, and drowning risk
11:15 — The sensory experience of being underwater
13:00 — Caregiving and the realization that not everyone needs to be “fixed”
15:30 — Invisible labor, motherhood, stress, and learning to relinquish control
18:30 — McKenna, college-student homelessness, and what happens without a support system
20:00 — Why there is no “struggle Olympics” in parenting
21:00 — Finding beautifully typical moments inside nonverbal autism
22:30 — Why caregiver stories can increase empathy and change how we see one another

Jacqueline Friedland is the USA Today and Amazon bestselling author of historical and contemporary women’s fiction. After earning degrees from the University of Pennsylvania and NYU Law School and practicing as a commercial litigator, she received her MFA in creative writing from Sarah Lawrence College. Her novels have earned multiple honors, including Readers’ Favorite Gold Medals, a Kirkus Reviews Best Indie Book of the Year selection, and a SheReads Best Book Club Pick. Her sixth novel, Breathing Under Water, arrives from Harper Muse in August 2026 following acclaim from Booklist, People, Zibby Owens, and the Jewish Joy Book Club. She lives in Westchester, New York.


Read Jacqueline Friedland's Breathing Underwater, a novel exploring autism, caregiving, identity, swimming, support, and the unexpected relationships that can transform our lives.

Subscribe to the Inchstones Podcast for more caregiver stories, conversations about nonverbal autism, and honest discussions of special needs parenting across childhood, adolescence, and adulthood.

There is a line in Dr. Sylvia Fogel’s recent commentary on the Interagency Autism Coordinating Committee’s (IACC) working draft strategic plan that I have kept returning to: “The brain is not absent. It is integrated.” The sentence is so simple, but it gets at something that has been missing from too much of the autism conversation for too long.

We have a habit of forcing autism into opposing camps: genetics or environment, brain or body, acceptance or treatment, autistic people or their families, science or lived experience. Each side becomes suspicious that acknowledging the other somehow diminishes its own importance, and the result is often less clarity, not more.

The new IACC draft points in a different direction. It argues for a broader way of studying autism, one that continues to take genetics and neuroscience seriously but also asks how immune function, metabolism, mitochondrial biology, the microbiome, environmental exposures and developmental timing may interact. That is not a rejection of the brain. It is an acknowledgment that the brain belongs to a body. Imagine that.

For families like mine, this is not an abstract distinction. I am the mother of two children with profound, non-speaking autism, and I have spent years watching what happens when medicine, education and disability systems try to divide a person into separate categories that do not behave separately in real life.

A child cannot tell you that her stomach hurts. Another cannot explain that he has not slept well for weeks. A change in behavior could reflect pain, fear, sensory overload, a neurological event, frustration, a medication effect, illness or some combination of those things. Parents of non-speaking children become accustomed to this kind of uncertainty we wear the messy grey as an identity. We watch. We compare. We notice small changes. We try not to overinterpret them because doing so would possibly use up very precious energy we have. We try to find clinicians who will take them seriously without pretending that observation is the same thing as proof.

Why does that distinction matter? Because families can identify questions and I believe science has to answer them. This is one reason I found Dr. Fogel’s response to criticism of the IACC draft so important. She is not arguing that every emerging theory about autism is correct. She argues that serious questions deserve serious investigation and should be judged by the quality of the evidence rather than dismissed for falling outside familiar boundaries. In fact, I wrote about that in a previous article earlier this year.

That is a modest argument, in some ways, but it is also a badly needed one. Autism research has produced extraordinary advances, particularly in genetics and neuroscience, while autism itself remains extraordinarily heterogeneous. Some autistic people live independently. Others require lifelong, round-the-clock support. Some speak fluently. Others cannot reliably communicate pain, hunger or danger. Some have few medical complications, while others live with epilepsy, gastrointestinal disease, sleep disorders, catatonia, severe intellectual disability or other conditions that may profoundly shape their lives.

A research agenda broad enough to reflect that reality should not be controversial. It should, however, be careful. Systems biology is not a permission slip for speculation. A biological association is not proof of causation. A hypothesis is not a treatment. A small study is not a clinical recommendation. If autism research expands its scope, the standards should become more rigorous, not less. Findings should be replicated. Subgroups should be defined carefully. Negative results should matter. Families should be protected from the familiar cycle in which preliminary findings are turned into commercial promises long before the science is ready.

Scientific caution and scientific curiosity are not opposites. We should be able to say, at the same time, that we do not yet know what something means and that it is worth finding out.

That posture becomes especially important when we talk about profound autism. People with the most significant disabilities are often the hardest to include in conventional research. That difficulty can turn into invisibility, and invisibility has consequences.

If the people with the greatest support needs are underrepresented in research, then of course questions remain. This is where lived experience belongs in the scientific conversation, not as a substitute for evidence but as a source of accepted inquiry. keeps returning to the same habit of mind: ask the question anyway. Her published work pushes researchers to examine possibilities that sit outside the usual frame without pretending the answer is already known. That persistence is useful to me too; science can survive an uncomfortable question. Premature certainty tends to cause more trouble.

Parents notice things. Autistic people notice things. Clinicians notice things. Researchers notice things. None of these perspectives is sufficient on its own. A functioning research culture should be able to move information between them, with lived experience identifying what deserves attention, science testing whether those observations hold up, clinicians asking whether the findings matter for care, and policymakers asking whether anything learned actually reaches the people whose lives prompted the question in the first place.

That is what translation is supposed to look like. Translation is fundamental to the work of INCHSTONES.

But there is another implication of systems thinking that I believe autism policy has not yet fully confronted. If we are willing to acknowledge that biological systems are interconnected, then we should be willing to acknowledge that human systems are, too.

A profoundly disabled person does not live in isolation, and neither does the person caring for him. In the United States, much of the support required by people with significant disabilities is provided quietly, in homes, by family members whose unpaid labor is barely visible in public policy. When formal systems fail, the need does not disappear; it moves into the home. It moves into the mother who leaves the workforce because there is no appropriate care, the father who changes shifts so someone can always be present, the family that absorbs lost wages and lost retirement savings, the sibling whose childhood is shaped by the rhythms of care, and the caregiver whose own health gradually becomes part of the cost. At a recent pediatric neurology appointment for my own nonspeaking and profoundly autistic children, the clinician looked me squarely in the face and, to paraphrase, told me I was at real risk of severe burnout and collapse and needed to prioritize my own health without apology. (Apparently, even the medical system eventually notices when the infrastructure starts to fail.)

Then we make a strange accounting choice. We continue to measure the needs of the disabled person while treating the person providing the care as if she were somehow outside the system.

She is not.

I have spoken at the NIH to the IACC about the lives of profoundly autistic Americans because I believe they remain too easy to disappear into broad language about “the autism community.” Their needs are often different in degree and in kind. But I have also spoken about the families around them, not because parents should replace autistic people at the center of autism policy, but because profound disability creates interdependence.

That is not a matter of ideology so much as a matter of logistics. And, as I learned as a constituent at the a JCOC, a prestigious collection of America’s finest most decorated corporate leaders (and little ol’ me!) a few summers ago, logistics wins wars. The war I am fighting is not against my children; it is against the parts of profound autism that threaten their health, safety, communication and ability to live full lives.

And I do mean interdependent lives, not independent ones. Independence is an oddly worshipped American ideal for a species that has never managed to survive without one another. But when a person requires another human being to stay alive, be fed, receive medical care, get where they need to go, access education, communicate and move through daily life, then yes, the logistics become existential. In that sense, I am at war with profound autism, because I want more freedom, more health and more possibility for my children than the condition currently allows.

We should be studying that relationship with the same seriousness we bring to other systems. What happens to caregiver health after 20 years of chronic sleep disruption? What happens to a family’s economic security when one parent leaves the workforce to provide care that cannot reliably be purchased elsewhere? What happens when a direct-care workforce shortage becomes a family-caregiving crisis? What happens to profoundly autistic adults when the parents who built their entire support structure begin to age? What is the effect of reliable respite, and what is the effect of not having it? How do medical complexity, communication disability and caregiver exhaustion interact?

These are not sentimental questions. They are measurable ones, and they matter because the American disability system has, for decades, relied on caregiving as if it were an inexhaustible resource.

It is not. There is a body attached to that labor, and there is a family attached to that body.

This is why I think the IACC draft’s broader emphasis on integration is important beyond the research questions it raises. This is where autism policy often becomes uncomfortable, because discussions about caregivers are sometimes treated as if they compete with the rights of autistic people. I reject that premise with extreme prejudice. Recognizing caregiver health does not diminish autistic personhood. Acknowledging profound disability does not diminish neurodiversity. Pursuing treatments and studying biological contributors to autism does not require us to believe that every difference is pathology.

These are false choices, and they have consumed far, far, far too much energy.

Dr. Fogel wrote that the challenges facing autistic people and their families should compel people to cross political lines rather than retreat behind them. I agree and I would take that even further. We also need to cross disciplinary lines. Geneticists need immunologists, neuroscientists need clinicians, researchers need families, policymakers need people living with the consequences of the policies they write.

We do not need certainty before asking a question. We need rigor before answering it.

The central challenge now is not choosing which part of that story deserves attention. It is learning how the parts connect. That is what drew me to Dr. Fogel’s phrase in the first place: the brain is not absent. It is integrated.

Perhaps that is the principle worth carrying forward. The brain belongs to the body. The autistic person belongs to a family and a community. The caregiver belongs inside the health equation. Science belongs in conversation with lived experience. None of these relationships requires us to abandon rigor in order to acknowledge complexity.

We can follow the evidence without narrowing the questions before we begin. We can investigate biology without reducing a person to biology. We can center autistic people while telling the truth about profound disability. We can support caregivers without confusing their needs with those of the people they love. We can stop treating interconnected problems as though they arrived in separate boxes.

For years, families like mine have lived inside the connections. Perhaps autism research and policy are finally beginning to study them. And study them together.

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

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In this follow-up conversation, Sarah Kernion and pediatric neurologist Dr. John Gaitanis explore why so many parents struggle to access testing, treatments, and physicians willing to investigate the underlying biology affecting their child's health and development. Together, they discuss the vision behind Meadow, a telehealth platform designed to expand access to physician-guided care for autistic children and families.

Dr. Gaitanis explains why treatments such as leucovorin, gut microbiome testing, mitochondrial support, and other evidence-informed interventions are often difficult for families to obtain—even when research demonstrates safety and potential benefit. Rather than promoting a single solution, he describes a whole-child approach that asks a different question:
What is preventing this child from feeling and functioning at their best?

Sarah and Dr. G also discuss communication, pain, nervous system regulation, caregiver advocacy, and why behavior should never be viewed in isolation. For many non-speaking autistic individuals, behaviors such as aggression or self-injury may be expressions of untreated pain, inflammation, sensory challenges, or an inability to communicate effectively. Looking beyond behaviors and searching for root causes has the potential to improve quality of life for both children and their families. 

Whether you're beginning your autism diagnosis journey or looking for additional autism support resources, this episode encourages families to ask better questions, seek individualized care, and remain open to evidence-based approaches that prioritize the whole child.Resources

Learn more about Meadow Health and Dr. John Gaitanis' work in individualized autism care.

Subscribe to the Inchstones Podcast for conversations about autism advocacy, caregiver stories, and neurodivergent parenting, featuring physicians, researchers, caregivers, and advocates working to improve the lives of autistic individuals and their families.

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. & , 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.

Subscribe to the Inchstones Podcast for more conversations about autism advocacy, caregiver stories, and neurodivergent parenting that help families feel seen, supported, and understood.

Read more essays on the Inchstones Substack.

After years of feeling like she didn't quite fit anywhere, Elyse Davis decided to stop softening her family's story.
Instead of repeating comforting platitudes, she began speaking honestly about the emotional complexity of raising a child with significant developmental disabilities—the grief, the love, the frustration, the joy, and the deep transformation that can all exist at the same time. Her words resonated with thousands of caregivers who quietly thought, Finally, someone said it.

In this conversation, Sarah and Elyse explore what happens when families give themselves permission to hold contradictory emotions without guilt. They discuss disability parenting, caregiver mental health, sibling dynamics, communication challenges, navigating educational systems, and why parents should never have to minimize their reality to make others comfortable.
They also explore the often-overlooked complexity of children whose diagnoses don't fit neatly into one category, the importance of individualized communication supports, and how parents become their child's most effective advocate by learning to trust what they observe every day.
This episode explores:
caregiver stories and honest conversations
autism advocacy beyond labels
neurodivergent parenting and complex diagnoses
caregiver emotional support
navigating IEPs and educational advocacy
sibling relationships in disability families
grief, resilience, and acceptance
why hope grows stronger when it's built on truth
Whether you're newly navigating a diagnosis or years into your caregiving journey, this conversation offers something rare: permission to tell the truth about your life while still believing in your child's future.
In This Episode
02:00 — Why Elyse stopped sugarcoating disability parenting
06:30 — Holding grief and joy at the same time
10:45 — Raising neurotypical and disabled siblings under one roof
15:30 — Living between diagnoses and not fitting into one community
20:00 — Sign language, communication, and trusting your child's strengths
25:00 — Navigating IEPs and advocating within broken systems
30:00 — Why caregivers must trust what they see
34:00 — The evolving meaning of "Welcome to Holland"
Resources

Connect with Elyse Davis on Instagram for honest reflections on disability parenting, advocacy, and caregiver life.
Subscribe to the Inchstones Podcast for conversations about autism advocacy, caregiver stories, and neurodivergent parenting, featuring parents, clinicians, researchers, and advocates working to help families feel seen and supported.

Elyse Davis is a disability mom, content creator, and advocate who shares the honest realities of raising a child with complex needs. Through storytelling, faith, and humor, she explores disability parenting, advocacy, grief, guilt, motherhood, and the everyday moments that connect us. Known for saying the things many parents are thinking but rarely say out loud, Elyse has built a community where families feel seen, understood, and a little less alone as they navigate the unexpected journey of disability parenting.

In this deeply honest conversation, Sarah and Evan explore what happens when identity, career, expectations, and parenthood collide. Together they discuss the emotional journey of becoming a special needs father, processing grief, balancing work and caregiving, and learning to see disability not as the end of a story—but the beginning of a completely different one.

Evan shares how leaving his career at TMZ allowed him to embrace a new definition of success, why his daughter Sydney became one of his greatest teachers, and how his son is growing into a compassionate sibling whose understanding of disability is quietly changing the world around him.
This episode is about more than disability. It's about what happens when life forces you to become someone new.

Whether you're navigating an autism diagnosis, raising a child with profound disabilities, supporting neurodivergent families, or simply searching for hope inside an unexpected life, this conversation is a reminder that joy can exist alongside grief—and that sometimes the life you never planned becomes the one you were always meant to live.

In This Episode
02:00 — Sydney's birth at 25 weeks and surviving 143 days in the NICU
06:15 — Identity, work, and trying to hold onto a "normal" life
09:30 — Processing grief after a life-changing diagnosis
13:00 — Why fathers experience caregiving differently
17:15 — Anger, healing, and emotional recovery
21:00 — Raising siblings alongside children with disabilities
25:00 — Inclusion, friendship, and changing the next generation
29:00 — Adventure, surfing, Disney, and giving children full lives
33:00 — Living in the present instead of fearing the future

Resources
Learn more from Evan Rosenblum by reading his Substack, where he writes about fatherhood, disability, caregiving, and finding meaning through unexpected life experiences.

Subscribe to the Inchstones Podcast for more conversations about autism advocacy, caregiver stories, and neurodivergent parenting featuring parents, clinicians, researchers, and advocates helping families thrive.

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Full Episode Description

When Nora Canzoneri’s son Cam received his autism diagnosis in 2018, she walked out of a developmental pediatrician’s office with a diagnosis, a list of books, and instructions to find ABA therapy. Like so many parents beginning an autism diagnosis journey, she was left with more questions than answers.

Years later, Nora reflects on what she wishes she had known from the beginning: while autism is an important part of her son’s life, it is not the whole story.

Together, Sarah and Nora explore neurodivergent parenting, caregiver experiences, the pressure to act quickly after an autism diagnosis, and the cultural expectations that quietly shape how parents measure progress. They discuss the urgency many families feel to “do everything right,” the grief of letting go of imagined timelines, and the freedom that comes from recognizing inchstones instead of milestones.

The conversation also explores family travel, adapting expectations, sensory regulation, anxiety, and raising an autistic child who continues to surprise everyone—including his mother—with his humor, memory, resilience, and personality.

This episode explores:

* autism advocacy through everyday parenting
* caregiver stories and shared experiences
* autism diagnosis journeys
* parenting autistic children beyond the diagnosis
* autism family dynamics
* caregiver emotional support
* autism parenting advice
* understanding neurodiversity through acceptance rather than comparison
* finding peace in the unexpected

Whether you’re newly navigating an autism diagnosis or years into your family’s journey, this conversation is a reminder that your child is far more than a checklist of behaviors or developmental milestones. They are becoming who they are—and you are becoming the parent they need.

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In This Episode

00:00 – Remembering diagnosis day and the emotions that followed

04:00 – Walking out with an autism diagnosis and more questions than answers

07:00 – The urgency parents feel after diagnosis

10:00 – Letting go of developmental timelines

13:30 – Expectations, acceptance, and finding inchstones

16:30 – Why autism parenting changes as children grow older

19:00 – Traveling with an autistic child and embracing adventure

23:00 – Understanding behavior through connection instead of fear

26:00 – Parenting the child—not the diagnosis

30:00 – Advice for parents beginning their autism diagnosis journey

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Listen to more episodes of the Inchstones Podcast, where Sarah Kernion shares caregiver stories, champions autism advocacy, and explores neurodivergent parenting through honest conversations with parents, clinicians, researchers, and advocates helping families feel seen, supported, and understood.

For most people, singing is something you do to pass the time or for pleasure.

For us, it is therapy, communication, practice and hope.

My daughter Milly is 11 years old and has profound, non-speaking autism. She also has childhood apraxia of speech, a neurological motor planning disorder that makes coordinating the precise movements required for speech incredibly difficult. There is currently no cure. One of the greatest misconceptions about this condition, apraxia, is that it reflects a lack of understanding. In Milly’s case, the opposite is true. Her receptive language is 100% intact; she understands far more than she can reliably express. So the challenge becomes complex as is not one of desire or intelligence, it is physiological. Her brain knows what it wants to say, yet the pathway that carries that message to the muscles of her mouth is unreliable.

Yet something remarkable happens when we sing and her brain does what science continues to prove: the rhythm organizes her breathing, the melody seems to recruit different neural pathways and sounds that are impossible for her to produce in a conversational tone suddenly become accessible inside a familiar song. (I often joke that our house runs on Disney songs and nursery rhymes, but there is more truth in that than humor. Every song is another opportunity to strengthen the muscles that one day may allow her voice to emerge more freely.)

What I didn’t appreciate until years into this journey was that I had unknowingly been preparing for this long before Milly was ever born.

I grew up studying classical vocal performance through the Kodály method, a rigorous approach to music education built around singing, ear training, rhythm, sequencing, and the belief that music is not simply performed but deeply embodied. As a little girl, I spent countless hours learning solfège, sight singing, rhythmic exercises, and vocal discipline. At the time, it simply felt like hard work for a 4th grader. It never occurred to me that decades later I would find myself drawing from those same instincts, not on a stage or in a recital hall, but sitting beside my daughter as we sang “Twinkle, Twinkle, Little Star” for what must be the 100,000th time. Somewhere along the way, musical education stopped being something I had accomplished in my yesteryears and became the greatest gifts I could offer my child.

One of the reasons I enjoy reading is because beneath everything he writes is a conviction that children need more than love alone. They need parents who are willing to lead. In a culture that often encourages us to outsource our instincts or negotiate every uncertainty, he reminds us that motherhood and fatherhood require confidence, steadiness, and responsibility.

As the mother of three beautiful, healthy children, including my youngest two, Milly and Mack, who both have profound, non-speaking autism, I’ve often wondered whether people assume those principles somehow stop applying to families like mine. After all, my children cannot always explain what hurts. They cannot sit down for long conversations about consequences or tell me exactly why they’re overwhelmed. Much of what they experience must be interpreted through observation rather than language.

Yet, I have found that profound autism doesn’t diminish the need for parental leadership. It magnifies it.

The leadership simply looks different. (Incredibly and tiresomely different.)

Before autism, I probably would have defined leadership as having answers. Knowing what to do (check), make good decisions (check), and set clear expectations (check.)

Today, I think leadership begins with paying attention.

In my home, leadership is noticing that music reaches Milly in ways spoken language cannot. It is recognizing that a sleepless night almost always predicts a difficult tomorrow. It is understanding that what appears to be a behavioral issue may actually be GI pain, sensory overload, anxiety, or simple exhaustion. It is resisting the massive temptation to force my children down a path that was designed for someone else and instead asking, over and over again, “How does this child experience the world?” That question alone has changed me far more than they have changed my children.

As a geriatric millennial woman with my oldest child being typically developing teenager, I went into motherhood in 2012 thinking the best parents had all the answers. True autism dismantled that illusion rather quickly. I don’t spend my days feeling like I have parenting figured out one bit. I spend them observing and wondering and staying curious which fundamentally just means this: I ask better questions. What changed? What happened before this? What is Milly of Mack communicating with their body that she cannot yet communicate with words? What small detail have I overlooked?

It’s one of the reasons I named this community INCHSTONES.

The world celebrates milestones because everyone can recognize them. Parents raising children with profound autism become fluent in something much smaller. We celebrate a new consonant tucked inside a familiar song. A few extra seconds of shared attention. A calmer transition. A spontaneous gesture. The first time a therapist notices something we’ve been quietly seeing at home for months. I believe that these tiny observations aren’t merely coping mechanisms for families like mine. They are among the deepest expressions of unconditional, parental love.

I have been blessed by extraordinary team of therapists and clinicians who have helped our family in ways I can never adequately repay. Angels among us. And their expertise has expanded my own understanding immeasurably. Yet every one of them would likely tell you the same thing: no one spends as much time studying my children as I do. I have watched Milly sing words before she could ever speak them. I have watched Mack communicate entire thoughts through his eyes, his posture, and the way he reaches for my hand. That doesn’t make me the expert on autism. It makes me the expert on my children.

Perhaps that’s where John Rosemond’s philosophy and my own intersect.

Parents are not called to know everything. We are called to know our children.

That kind of knowing cannot be outsourced to another human. It is earned through millions of ordinary moments that, taken individually, seem insignificant. One bedtime song. One walk around the neighborhood. One difficult afternoon. One more chorus sung together in the kitchen.

Somewhere along the way, I realized that all those years of musical training were never simply teaching me how to sing. They were teaching me how to listen and integrate, reflect and notice.

And it has become one of the greatest acts of leadership my children will ever ask of me.

If you’d like to see what this looks like in real life, I’ve included a few short videos below of Milly and me singing together. They aren’t polished. They’re just ordinary moments in our living room and on a walk. These clips are simply of us what we’ve done thousands of times together: singing, practicing, connecting, hoping.

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

In this episode of Inchstones, Sarah Kernion sits down with author and nurse practitioner Valerie Probstfeld, creator of To Mom Is to Love, for a heartfelt conversation about caregiver stories, neurodivergent parenting, grief, identity, and learning to choose love when life unfolds differently than expected.

Valerie shares the experience of becoming a mother in the NICU, where losing control forced her to rethink what motherhood truly means. Together, she and Sarah explore how unexpected diagnoses, profound autism, medical trauma, and unmet expectations reshape caregivers—and why healing often begins by releasing the illusion of control.

From autism parenting advice and caregiver emotional support to the role of nature, community, and nervous system regulation, this conversation reminds every parent that growth is rarely linear. Whether you’re raising a child with autism, navigating a difficult diagnosis, or simply learning to trust yourself again, this episode offers encouragement to recognize the sacredness hidden inside ordinary moments.

In this episode:

02:10 — Becoming “Mom” and the unexpected identity shift of motherhood

06:10 — Why unmet expectations can feel more painful than reality itself

10:20 — Medical trauma, grief, and feeling unseen as a caregiver

13:10 — Releasing the illusion of control through motherhood

15:00 — Nature, resilience, and why growth is never linear

18:00 — Water, nervous system regulation, and profound autism

21:15 — Why caregivers need community more than ever

24:00 — Choosing love over fear in everyday parenting

27:00 — Finding meaning through the smallest inchstones of motherhood

Resources

Learn more here about Valerie Probstfeld and her book To Mom Is to Love.

Subscribe to the Inchstones Podcast for more conversations about autism advocacy, caregiver stories, neurodivergent parenting, and practical encouragement for families raising autistic children.

Read Sarah’s caregiver essays on the Inchstones Substack.

I imagine every human being eventually arrives at this realization. None of us knows what tomorrow holds. We all live with unanswered questions about our health, our children, our relationships, our work, and the people we love. We spend so much of our lives trying to predict the future and plan plan plan, only to discover that certainty was never promised to any of us in the first place.

As a forty-three-year-old American mother of three beautiful, healthy children, two of whom—Milly, 11, and Mack, 8—have profound, non-speaking autism, uncertainty isn’t something I occasionally experience. It has become the landscape of my daily life.

For years, I’ve tried to understand what living this way has done to my nervous system. In support groups and in conversations with friends, we often talk about our children’s needs as though we’re giving weather reports. Who slept? Who didn’t? Who is sick? Who is eloping? Which medication is helping? Which therapy no longer seems to work? Will school call today? Will insurance deny another claim? Will puberty change everything? Will my child ever be able to tell me they’re in pain?

Our children don’t simply require planning. They require perpetual readiness.

Profound autism is, by its very nature, emergent and disordered. It asks parents to remain alert to needs that can change in an instant without reason. Even during peaceful seasons, there is often a quiet awareness humming beneath the surface that life could change without warning. I don’t say this seeking sympathy. It’s simply the reality of raising children whose support needs are both lifelong and unpredictable.

I don’t think I fully appreciated what years of living this way had done to my body until recently.

After graduating from Penn State, my first job was as a pharmaceutical sales representative. One of my district managers repeated a phrase so often that it became part of our culture: “Control the controllables.”

At 22, it sounded like a motivational slogan.

At 43, it feels more like an invitation to freedom.

Because while I’d like to tell you that there’s a lot I can control in my day to day, very little about my children’s disabilities is controllable.

I cannot control whether Mack discovers another creative way through fenced in playground that had one loose panel. I cannot control whether he or his sister sleeps through the night or wakes before dawn. I cannot control how quickly research advances, whether another therapy will help, or what adulthood will ultimately look like for either of them. I cannot control how the world understands profound autism, or whether our healthcare systems and educational systems will evolve quickly enough to meet families where they are.

If I spend my life trying to control those things, I will slowly surrender the only thing that actually belongs to me.

My own life.

Lately, I’ve found myself returning to an unexpected teacher: Stoicism.

Growing up, I didn’t know that word. I simply knew my grandmother.

She was what I would affectionately call an Irish stoic. She wasn’t cold, and she certainly wasn’t emotionless. She simply possessed a quiet steadiness that refused to let hardship or external chaos define her. She didn’t spend her days rehearsing what life should have been. She accepted reality without surrendering hope, picked up the next thing that needed doing, and carried herself with a dignity I understand far more now than I did as a child. I was drawn to that and felt so safe in her presence and, even years after she’s passed, her memory does the same.

The older I become, the more I think she understood something I am only beginning to learn: Life asks us to accept reality before we can faithfully respond to it.

For much of my adult life, I unknowingly outsourced my identity to things outside of myself. Financial security. Achievement. Comfort. Predictability. Recognition. I believed that if enough external pieces finally fell into place, I would become peaceful.

Profound non-speaking autism has dismantled that illusion.

Not because autism caused it per say, but because autism exposed it through 1000 cuts in the matrix of society’s conditioning.

It revealed just how much of my peace depended upon circumstances cooperating with my expectations.

The Stoics believed that suffering often comes not from reality itself, but from demanding that reality become something different before we agree to live wholeheartedly within it. As a Catholic, I find remarkable harmony in that idea. Christ never promised a life free of suffering. He invited us to carry our crosses faithfully, trusting that transformation often happens not after hardship, but through it.

That has become a difficult invitation for me. Incredibly difficult, if I’m being most honest.

Every major transition in my life has tempted me to run. To distract myself. To overwork. To overspend. To plan my way out of uncertainty. To convince myself that if I could just solve the next problem, I wouldn’t have to feel this one. But that, at it’s core, is not how transformation works.

It asks us to stay. It asks us to sit in the hot loneliness that often accompanies becoming someone new. It asks us to endure the incredibly strange season where an old identity has fallen away and the new one has not yet fully emerged. It asks us to stop reaching for immediate relief long enough for deeper formation to take place.

No one applauds that part. And your social media algorithm never even sees it.

And yet I suspect it is precisely there that our character is quietly being built.

These days, when my mind begins racing toward everything I cannot control, I try to return to a much smaller question.

What can I steward today?

I can strengthen my body so I have the endurance to care for my family for decades to come.

I can protect my relatioships.

I can create a peaceful home.

I can spend my money wisely.

I can tell the truth.

I can apologize quickly.

I can remain curious.

I can choose courage over fear.

I can continue learning.

I can be fully present with the three beautiful children entrusted to my care.

And perhaps most importantly, I can use the very best parts of who I am in service of other mothers and caregivers walking a similar road.

Because after eleven years of raising a daughter with profound, non-speaking autism and eight years raising her little brother with the same diagnosis, I know what it feels like to wake up carrying questions that have no immediate answers. I know what it feels like to live with invisible grief while simultaneously experiencing extraordinary joy. I know the exhaustion of constant vigilance, and I know the fierce love that somehow continues expanding to meet every new challenge.

If my life has given me anything worth offering, perhaps it isn’t expertise as much as companionship. That my role is simply to stand beside another mother and quietly remind her that she isn’t losing herself: she’s becoming someone she never could have become any other way.

The irony is that I set out to write this letter asking what I can control.

I think the better question is what I can faithfully steward.

Control suggests ownership.

Stewardship acknowledges that much of life has been entrusted to us for a season, while reminding us that we were never meant to carry the weight of being sovereign over it. I suspect is where peace has been hiding all along.

Not in finally eliminating uncertainty.

Not in finally having all the answers.

But in learning, one ordinary day at a time, to faithfully tend what has been placed in our hands while gently releasing everything that never belonged there in the first place.

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

In this episode of Inchstones, Sarah Kernion sits down with pediatric neurologist Dr. John Gaitanis to explore why autism care should begin with understanding the individual child—not simply the diagnosis. Together they discuss autism advocacy, root cause medicine, caregiver experiences, neurodevelopment, inflammation, motor planning, and why families often recognize important patterns long before medicine does.

Dr. Gaitanis challenges the idea that autism is a single biological condition, explaining why many children share a diagnosis while presenting with remarkably different medical histories, developmental pathways, and support needs. He shares why physicians should focus on understanding each child’s unique biology, why systemic inflammation and developmental regression deserve closer attention, and how artificial intelligence may help uncover patterns that families have recognized for years.

The conversation also explores the emotional side of neurodivergent parenting. Sarah and Dr. G discuss maternal pattern recognition, caregiver stress, nervous system regulation, sleep deprivation, and why supporting parents is inseparable from supporting autistic children.

Whether you’re navigating a recent autism diagnosis, raising a child with profound autism, searching for autism therapy options, or simply looking for thoughtful autism advocacy grounded in curiosity rather than certainty, this episode offers a hopeful framework for asking better questions.

In this episode:

03:10 — Why “autism” may describe many different biological conditions
07:30 — Maternal pattern recognition and why caregivers often notice problems first
10:05 — Systems thinking versus siloed medicine in autism care
14:00 — Why two autistic children can have completely different biological profiles
18:15 — Artificial intelligence and the future of autism diagnosis and personalized medicine
21:05 — Whole-body dyspraxia, motor planning, and autism communication
27:20 — How physicians can move beyond diagnostic labels to see the whole child
35:45 — Caregiver burnout, chronic stress, and protecting parent health
41:05 — Why trusting maternal intuition matters throughout the autism diagnosis journey

Resources

Learn more about Dr. John Gaitanis and Meadow BioSciences.

Subscribe to the Inchstones Podcast for more conversations about autism advocacy, caregiver stories, neurodivergent parenting, profound autism care, and practical support for families raising autistic children.

Read more caregiver essays on the Inchstones Substack.

When Tommy’s son Wyatt began losing language around age two and a half, everything he thought he knew about fatherhood changed. As a construction business owner, husband, and father, he spent years believing strength meant fixing problems. Autism forced him to discover a different kind of strength: presence, surrender, and learning to live one inchstone at a time.

Together, Sarah and Tommy explore autism parenting, profound autism, fatherhood, caregiver mental health, marriage, faith, and the quiet transformation that often happens inside parents long before anyone else notices it.

This conversation explores:

* autism fatherhood
* nonspeaking autism
* profound autism
* caregiver mental health
* autism parenting and marriage
* faith during difficult seasons
* living in the present moment
* autism advocacy
* parenting beyond societal expectations
* finding joy in inchstones instead of milestones

Tommy also shares his experience navigating anxiety, depression, and the realization that while he could not fix autism, he could become a different father because of it. His story offers encouragement for autism dads, caregivers, and families searching for hope grounded in reality rather than false promises.

⸻

In This Episode

00:00 – Introducing Tommy and Spectrum in Camouflage
02:00 – Becoming a father after years of waiting
04:00 – Wyatt’s autism regression and losing language
06:00 – Anxiety, mental health, and feeling powerless
08:00 – The mountain where everything changed
10:00 – Why autism brought Tommy to his knees
12:00 – Faith, surrender, and finding purpose through autism
15:00 – Success versus significance in fatherhood
17:00 – The hidden expectations parents carry
19:00 – Why inchstones matter more than milestones
21:00 – Learning to see growth differently
23:00 – Autism, communication, and presence beyond words
25:00 – Living where your boots are: staying present today
28:00 – Parenting typical and autistic children differently
31:00 – Mental health, nervous system regulation, and resilience
33:00 – Speaking openly so other autism dads feel less alone

Listen to more episodes of the Inchstones Podcast, where Sarah Kernion shares caregiver stories, autism advocacy, profound autism experiences, neurodivergent parenting, and honest conversations that help families feel seen, understood, and less alone.

Getting my children safely from the house to the vehicle requires my complete attention. Their profound, non-speaking autism and whole-body apraxia mean that what appears simple from the outside is anything but. While I do my best to let them practice independence and “test the nest,” every transition carries variables once we step outside our front door. A routine that worked yesterday may not work today. A distraction that seemed insignificant yesterday may suddenly matter. Uncertainty isn’t something waiting years in the future. Sometimes it lives in thirty feet of driveway.

For years, I thought I was searching for certainty.

Looking back, I don’t think that’s true.

I think I was searching for relief.

Relief from not knowing. Relief from carrying questions that don’t have answers yet. Relief from watching people I love struggle with things that seem effortless for others. Once I saw that, I started noticing it everywhere—in the appointments, the research, the late-night reading, and the endless hope that the next conversation, clinician, or intervention might somehow make life easier for my children.

Like many parents of children with profound disabilities, I have spent years searching for answers. The search became so woven into the fabric of my life that I stopped noticing it. One specialist led to another. One evaluation generated three more referrals. Therapy schedules filled calendars. Waiting rooms blurred together. Conversations about communication became conversations about motor planning. Motor planning became genetics. Genetics became neurology. Neurology became environmental factors. Every path seemed to branch into five more.

Every new appointment carried the same quiet hope.

Maybe this person will see something everyone else missed.

Maybe this intervention will help.

Maybe this will be the thing that makes life easier.

I don’t regret that search. Loving my children almost requires it. If there is something that could reduce suffering, increase communication, or create more independence, of course I want to know about it. Of course I will keep asking questions. Of course I will keep looking.

But somewhere along the way, I started confusing answers with relief.

The realization began to take shape recently during an appointment with a specialist. The office looked exactly like every specialist office I had occupied over the past decade: eggshell-colored walls, fluorescent lights that seemed perpetually too bright, and the sterile atmosphere of a place where difficult conversations happen every day.

I had my phone in my hand and kept turning it over while he spoke.

Then he stopped talking.

He looked directly at me and said, “You’re going to hit burnout. You need to take caution.”

I remember putting my phone down. I remember sliding my hands underneath my legs and becoming very still. There was no argument rising inside me. No instinct to explain why he was wrong. No mental list of reasons why our situation was different.

Instead, I felt something settle.

The truth was that I already knew.

Caregiving has a way of disguising itself as ordinary life. Children need to be dressed. Children need to be fed. Communication needs to be supported. Safety needs to be maintained. The needs remain whether the caregiver is exhausted or not. Over time, the vigilance becomes so familiar that it fades into the background. You stop noticing it because it is always there.

The doctor’s words stayed with me for the remainder of last week, but not because of the burnout itself. The more I thought about it, the more I realized burnout wasn’t actually the thing underneath everything. Burnout was what happened after years of carrying something else.

The thing underneath was the relentless effort to get out from under uncertainty.

The effort to gather enough information or attend enough appointments and read enough studies and most definitely, think far enough ahead.

Prepare enough. Prepare indefinitely.

Maybe then I could finally exhale.

But certainty never came. And neither did the relief I thought certainty would bring.

I think about that often when I’m helping Milly get dressed.

Sometimes, after I help her change her pull-up, she’ll say something that sounds like either “help me” or “I’m mad.” The words sound remarkably similar. Truthfully, I don’t know which one she’s saying. Maybe she means exactly what she says. Maybe she means both.

What stays with me isn’t the uncertainty of the words.

It’s the look on her face.

The frustration is unmistakable, she’s 11yrs old and being wiped by her mother.

The desire to do it herself is unmistakable.

People talk about autism through diagnoses, support levels, and therapy goals. They talk about outcomes and interventions and research priorities. But standing in a bathroom or bedroom helping your tween daughter with something she wishes she could do independently strips away all of that language.

What’s left is something every human being understands.

The desire to have agency over your own life, for privacy and agency.

That is why I have never been comfortable with conversations that insist I must choose between acceptance and intervention. Life with profound autism does not fit neatly into anyone’s framework.

I love my children exactly as they are.

And I would take away their suffering if I could.

Both things are true.

Their dignity is not dependent on independence, productivity, or achievement. At the same time, if I could remove the barriers that make communication harder, that create frustration, vulnerability, and dependence, I would do it in a heartbeat.

Not because I want different children. Because I want less suffering and more relief for everyone involved.

The older I get, the more I suspect certainty was never really available to any of us. Parents of children with profound disabilities simply encounter that reality earlier and more often. Time keeps moving. Children grow. Bodies age. Circumstances change. The future remains stubbornly unwilling to reveal itself.

I’ve spent years trying to get certainty to show up.

It never does.

What does show up are the things directly in front of me: my health, my sleep, the next right choice, and the opportunity to remain faithfully present for the people I love.

Maybe that’s why I keep coming back to inchstones. They most certainly do not solve uncertainty nor do they keep the questions that keep me awake at night at bay.

Inchstones remind me that life is not waiting on the other side of uncertainty. Life is happening now, within the inchstone. Within the “dash.”

It’s happening in the driveway.

It’s happening in the bathroom.

It’s happening around the dinner table.

It’s happening in all the ordinary moments I used to rush through while looking for answers somewhere else.

These days, I still catch myself searching or curating or selecting with precision what to do next. (At 43yrs old, old habits die harder and harder.) But more and more, I recognize the search for what it is: Not a search for certainty.

A search for relief.

And while certainty never seems to arrive, relief sometimes does.

And arrives in laughter and giggles. It arrives in connection or when I see Milly take herself to the bathroom.

It arrives in those small moments that remind me that a meaningful life does not require any guarantees.

Tomorrow morning the front door will open again. The Suburban will still be sitting in the driveway. The distance will still be short.

The uncertainty will still be there.

But so will we.

And we’ll start walking anyway.

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