Inchstones with Sarah | Autism Advocacy & Caregiver Stories

When your autistic child is hitting, screaming, refusing a task or melting down, the first question is often, “How do I stop this behavior?”
But what if we're asking the wrong question?
In this episode of INCHSTONES, Sarah Kernion welcomes Laura Petix, pediatric occupational therapist, creator of The OT Butterfly and author of The Sensory Code, for a conversation about sensory processing, nervous-system regulation and what children's behavior may be communicating.
Laura challenges the familiar question, “Is it sensory or is it behavioral?” and explains why the more useful question is what may be happening beneath the behavior.
Together, Sarah and Laura explore:
- How to recognize the difference between “won't” and “can't right now”
- Why sensory overload can look like refusal or defiance
- Regulation versus compliance, and why harmless stimming shouldn't automatically be interrupted
- How to identify sensory patterns without becoming consumed by caregiver hypervigilance
- Why autistic children may become dysregulated after school
- Understanding elopement while taking its serious safety risks into account
- Three things parents can observe to better understand their child's sensory needs
- Why sensory dysregulation can accumulate throughout the day or week
- How parents can support their children's regulation while learning to understand their own nervous systems
As the mother of two children with profound, nonspeaking autism, Sarah brings the perspective of a caregiver who understands how much communication can happen without spoken words.
This conversation is not about finding one universal solution for every autistic child. It's about becoming more curious, more observant and more willing to consider what a child's body may be communicating before deciding how to respond.
Because sometimes the most important shift isn't changing the behavior. It's changing the question we're asking about it.

Guest: Laura Petix | The OT Butterfly | The Sensory Code
Host: Sarah Kernion | INCHSTONES Podcast | Instagram: @inchstonesbysarah
More conversations about profound autism, caregiver stories and special needs parenting: www.inchstonespodcast.com

For parents raising children with profound autism or significant disabilities, planning a vacation can feel overwhelming before anyone even packs a suitcase. Airports, TSA, sensory overload, unfamiliar hotel rooms, food restrictions, elopement risks and disrupted routines can make families question whether traveling is worth attempting at all.
But what if the goal isn't to eliminate every risk? What if it's to prepare well enough that fear doesn't make every decision?

In this episode of INCHSTONES, Sarah Kernion welcomes Jordana Izzo, Director of Accessible Travel at Travelmation, for a practical and deeply personal conversation about traveling with autistic children and family members with significant support needs.

After her son Sal was diagnosed with autism, Jordana refused to accept the idea that her family's world needed to become smaller. Today, she helps other families navigate accessible travel with greater preparation, realistic expectations and confidence.

Together, Sarah and Jordana discuss:
- Preparing autistic children for airports, flights and unfamiliar environments
- Practice flights, airport walkthroughs and visual preparation
- Planning around elopement risks, hotel safety and swimming pools
- Why downtime and realistic expectations can transform a vacation
- Choosing three meaningful activities instead of trying to do everything
- Accessible cruises, group travel and specialized respite support
- Making room for siblings whose needs and interests may be different
- The importance of asking specific questions before booking a trip

Sarah also shares what traveling looks like with her two nonspeaking children, Milly and Mack, whose needs and safety considerations are very different.

This isn't a conversation about creating the perfect autism-friendly vacation. It's about expanding our children's worlds without pretending that the work, risks and planning aren't real.

Because what might happen shouldn't automatically take away from what could happen.

Guest: Jordana Izzo | Travelmation
Host: Sarah Kernion | INCHSTONES Podcast
Find more conversations about profound autism, caregiver stories and special needs parenting at www.inchstonespodcast.com.

There are parts of profound autism that rarely make it into public conversation. Severe self-injury. Medical complexity. The fear of not being able to keep your child safe. And the isolation that comes when the world has no idea what life inside your home actually looks like.

Jillian Eisloeffel, founder of Bobby's World Profound Autism Advocacy, joins Sarah Kernion for an intimate conversation between two mothers raising children with profound autism.

Jillian shares how her son Bob began engaging in severe self-injurious behavior seemingly overnight, changing their family's life and beginning a difficult search for medical answers. She describes the emotional toll of trying to protect him, the barriers to accessing care, and what it means to advocate without a dependable support system.

But this conversation is also about the joy of watching Bob reconnect with the world around him, and the profound meaning Jillian finds in the smallest moments of his life. Together, Sarah and Jillian explore why mothers share difficult stories publicly, why caregivers with the greatest responsibilities are often missing from advocacy spaces, and how we might build communities that meet families where they actually are.

They also discuss the complicated relationship between honesty and advocacy: how to acknowledge the profound disability our children experience without diminishing their dignity, intelligence or humanity.

Because loving our children completely does not require us to pretend that their lives, or ours, are easy.

Honesty about profound autism isn't the opposite of love. Sometimes honesty is precisely what love requires.

Guest: Jillian Eisloeffel | Bobby's World Profound Autism Advocacy
Host: Sarah Kernion | INCHSTONES Podcast
More conversations: www.inchstonespodcast.com

What does disability inclusion look like when nobody is trying to make a statement—they're simply helping someone fully enjoy the moment?
Nashville singer-songwriter, Navy veteran and former physical therapist Brooks Herring joins Sarah Kernion after a video of him singing a young woman's favorite song directly to her reached millions of people.

Brooks shares how his relationship with disability was shaped by his younger brother Mark, who has Down syndrome, and why music has become one of the ways he creates connection across disability, veterans' communities and live audiences.

Sarah and Brooks talk about accessible experiences, controlling the environment when outings feel overwhelming, the power of favorite songs and why the smallest moments can become enormous.
Because belonging isn't simply being allowed into the room. It's getting to fully live in the room once you're there.

Topics Discussed:
disability inclusion, disability family stories, sibling relationships, Down syndrome, special needs siblings, inclusive communities, music and disability, accessible live music, disability advocacy, nonverbal communication, caregiver experiences, sensory-friendly outings, community participation, sibling advocacy, veterans, physical rehabilitation, joy, belonging, inclusion, sobriety, role models and meaningful moments.

Key Questions Answered
1. What does authentic disability inclusion look like in everyday life?
2. How did having a brother with Down syndrome shape Brooks Herring's perspective?
3. Why did Brooks' interaction with a young woman with disabilities resonate with millions of people?
4. What can music offer when spoken language isn't the primary form of connection?
5. How can caregivers make live music experiences more accessible or manageable?
6. Why can quieter times and smaller environmental changes make community participation easier?
7. What can artists do to help people with disabilities feel genuinely welcome?
8. Why are seemingly small moments sometimes enormous for people with disabilities and their families?
9. What's the difference between access and belonging?
10. How can siblings and allies become meaningful advocates without making disability about themselves?
Resources
Brooks Herring
Follow Brooks Herring for his music, live performances and work connecting with audiences through music.

Watch the Viral Video


INCHSTONES Podcast

Subscribe to the INCHSTONES Podcast for caregiver stories and honest conversations about special needs parenting, profound autism, disability, inclusion, communication, caregiver wellbeing and building meaningful lives for people with significant support needs.

Who will care for my child when I can't? For parents raising children with profound autism, the question of adulthood can feel impossibly far away—until suddenly it isn't.

Nicole Milo's son Caleb entered residential care at five and spent 17 years living hours from his family. As adulthood approached, Nicole confronted the disability-services cliff and realized the existing options didn't match the life she envisioned for him. So she began building another one.

Nicole joins Sarah Kernion to discuss profound autism, residential care, guardianship, adult services, caregiver grief, advocacy, collaboration and House of Hope, the micro-residential model she created to bring Caleb back to his community.

This is a conversation about planning long before 21—and allowing ourselves to ask a question many exhausted parents have stopped asking: What would the best possible adult life for my child actually look like?

Parents of neurodivergent children become extraordinary observers. We notice what happened before the meltdown, how our child slept, what changed at school, which transition was difficult and what worked last time. The problem? We're also exhausted...and much of that knowledge lives entirely inside our heads.

Allison Dickin, mother, UX researcher and founder of Neuraparent, joins Sarah Kernion to explore how AI can help parents recognize patterns without pretending technology knows their child better than they do.

They discuss behavior as information, why generic parenting advice often fails neurodivergent children, reducing the cognitive load of tracking, trusting parental expertise, and using technology to turn thousands of small observations into greater clarity.

The goal isn't to optimize or “solve” our children. It's to remain curious about them and give what we're already noticing somewhere to live. Parents of neurodivergent children become data collectors almost by accident. We remember the difficult transition before a meltdown, the night of poor sleep, the food our child didn't eat, the strategy that worked twice but failed the third time, the teacher's observation and the subtle shift nobody else would necessarily notice. The information is valuable. The person carrying it is also exhausted

Allison's path began with her own son. Generic advice about boundaries, consequences and rewards didn't adequately explain what she was seeing. A major shift came when she encountered Ross Greene's idea that children do well when they can. Instead of asking how to stop a behavior, Allison began asking what might be getting in her child's way.That same curiosity became foundational to Neuraparent. Rather than asking exhausted parents to maintain elaborate spreadsheets, the platform allows them to quickly record what they're noticing and, over time, look for larger patterns: What consistently helps this child? What makes things harder? Which parenting strategies seem to backfire? 

Sarah and Allison also confront an important tension in the age of AI. More data isn't automatically better, and technology shouldn't become another demand for optimization. The promise isn't that an algorithm will know a child better than their parent. It's that technology might help organize what the parent already knows.
Because parental intuition isn't the opposite of data. Often, it's where the data begins.

Topics Discussed
Neurodivergent parenting, AI and parenting, parenting technology, pattern recognition, caregiver cognitive load, parental intuition, behavior as communication, ADHD parenting, autistic children, meltdowns, emotional regulation, caregiver regulation, parenting strategies, IEP advocacy, parent expertise, caregiver burnout, parenting data, child behavior patterns, individualized parenting, Ross Greene, collaborative parenting, caregiver confidence and tracking progress.

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Subscribe to the INCHSTONES Podcast for caregiver stories, conversations about nonverbal autism, and honest perspectives on special needs parenting, profound autism, communication, behavior, caregiver mental health, education, advocacy, technology and raising children with significant support needs.

What should good ABA therapy actually look like in 2026? Leah Gross, founder of Circle Care Services and an occupational therapist and BCBA, joins Sarah Kernion to discuss how ABA has evolved and why autism therapy should be individualized, collaborative, compassionate, and built around the whole child.
Leah brings sensory regulation, environment, play, communication, and behavior into the same conversation.

She and Sarah discuss behavior as communication, why parents must help shape the care plan, how skills should generalize into real family life, and the difference between building agency and simply teaching compliance.

For parents navigating ABA, the question becomes less “Is ABA good or bad?” and more: Does this therapy help my child communicate, feel safe, build meaningful skills, and participate more fully in their own life?

When a nonspeaking autistic child can't reliably tell you their stomach hurts, they're exhausted, or something feels different, how do parents make sure everything happening in their body isn't simply attributed to autism?

Greer McGuinness, registered dietitian, functional medicine practitioner, founder of Biomedical Healing for Kids, and autism mom, joins Sarah Kernion to explore that question. Greer shares her son's developmental regression, her search for answers, and why she began looking more closely at nutrition, gut health, testing, and co-occurring medical concerns.
They discuss the tension between conventional and functional medicine, individualized care, caregiver observation, and why supporting a child's health doesn't require rejecting or trying to “fix” who they are.
The question underneath it all: Are we looking at the whole child?

In This Episode
00:00 When everything gets attributed to autism
01:31 Greer's son's early development and regression
04:45 Receiving an autism diagnosis and questioning what changed
05:34 Following the traditional autism therapy path
06:23 The friend who introduced Greer to biomedical conversations
07:48 Studying functional medicine and autism research
09:16 Beginning supplements and noticing changes in her son
10:36 Using data to track progress
12:03 Where Greer starts with families: nutrition and gut health
13:17 Co-occurring medical conditions versus “just autism”
14:54 What do we actually know about the gut and autism?
15:42 Why Greer wants conventional and functional medicine to work together
16:40 Supporting health versus trying to “cure” autism
18:20 Profound support needs and communication
20:00 Why another family's success doesn't predict your child's response
20:38 When a popular protocol made things worse for Greer's son
21:40 Parent intuition, experimentation, and discernment
22:35 Working with conventional and functional practitioners
24:11 Why parents often look to doctors for permission
25:03 When Greer disagreed with her developmental pediatrician
27:30 Standard of care versus individualized care
28:27 Looking at an autistic child's health isn't the same as trying to fix autism
29:47 Greer's resources for families
Topics Discussed
Profound autism, nonspeaking autism, developmental regression, functional medicine, biomedical approaches to autism, nutrition, gut health, gut microbiome, feeding challenges, constipation, sleep, co-occurring medical conditions, supplements, individualized care, caregiver observation, parent advocacy, conventional medicine, functional testing, autism research, and whole-child health.
Key Questions Answered
1. How can parents distinguish autism-related differences from possible medical problems?
2. What does a biomedical or functional medicine approach to autism actually mean?
3. Where does Greer suggest families begin when exploring whole-child health?
4. Why does she focus on nutrition and gastrointestinal health?
5. What can constipation, sleep changes, feeding issues, or behavior potentially tell parents?
6. Why can the same supplement or protocol affect children differently?
7. How can parents document changes rather than relying solely on memory?
8. Can conventional and functional medicine work together?
9. How can parents advocate when their clinician disagrees with an approach they want to explore?
10. Can parents accept their autistic child while still investigating pain, discomfort, or co-occurring health problems?

Resources

Greer McGuinness holds a Master of Science in Nutrition and Dietetics, is a Registered Dietitian, Certified Detox Specialist, Certified Master Herbalist, Certified Lyme Specialist, and a Certified Mental Health Specialist. Based in New York, she owns Biomedical Healing for Kids, a virtual Private Practice. As a dedicated professional with almost 20 years of experience, Greer has made significant contributions to the field of pediatric health. Her expertise lies in detoxifying toxins, enhancing gut health, and optimizing nutrient status. As a published researcher, she has focused on Autism and alternative medicine, showcasing her commitment to exploring innovative approaches to healthcare. Greer is a trailblazer in her field, having developed the pioneering Detoxing Toxins in Pediatrics course. Through her Rebalance Roadmap, she empowers parents and healthcare providers to safely and effectively detoxify toxins in children. By incorporating biomedical testing and integrative treatments, she aims to facilitate the advancement of children's developmental abilities, enabling them to lead active and healthier lives. Greer's passion for holistic health and her dedication to pediatric well-being make her a respected figure in the realm of nutrition and alternative medicine.

Follow Greer McGuinness and Biomedical Healing for Kids for education about nutrition, functional medicine, gut health, laboratory testing, and her approach to supporting children with autism and other complex needs.
Explore Greer's free Biomedical Workbook and ebooks, including information she provides for parents who want to learn more about laboratory testing and questions they can discuss with their child's healthcare providers.

For evidence-based information about autism and co-occurring medical conditions, families can also consult resources from the American Academy of Pediatrics, National Institutes of Health, and their child's licensed medical team before making significant dietary, supplement, or treatment changes.

Subscribe to the INCHSTONES Podcast for caregiver stories, conversations about nonverbal autism, and honest perspectives on special needs parenting, profound autism, communication, medical complexity, caregiver wellbeing, advocacy, education, and raising children with significant support needs.

What if the goal isn't to make your child's anxiety disappear? Jennifer Cohen Harper, founder of Little Flower Yoga, joins Sarah Kernion to explore childhood anxiety, nervous system regulation, sensory overwhelm, mindfulness, and what children actually need from us when they're struggling. Jennifer reframes anxiety as information rather than an enemy and explains why reassurance like “you're okay” or “take a deep breath” may not reach a child whose nervous system is already overwhelmed. Instead, parents can reduce overstimulation, increase connection, use sensory anchors, and first regulate themselves. This conversation explores the difference between supporting and accommodating anxiety, why overwhelmed children often cannot learn in the hardest moment, and how parents can build capacity without making children feel they need to be fixed. The inchstone? Ask yourself: What is my role right now?

In This Episode
00:00 Why the goal isn't eliminating childhood anxiety
02:01 Navigating anxiety instead of trying to make it disappear
03:18 Anxiety is information
05:37 Normal anxiety versus anxiety that disrupts daily life
06:14 Supporting children without doing everything for them
08:10 Two things that make anxiety worse: overwhelm and disconnection
09:28 Reducing sensory overstimulation
11:13 Using one sensory experience as an anchor
12:18 How sensory input can help children orient to safety
14:36 Why parents need to orient themselves first
16:46 Regulation, co-regulation, and connection
18:03 When a parent's need to “fix it” can increase anxiety
19:08 Why helping others can build competence in children
21:44 Mindfulness for parents and children
22:09 Not every difficult parenting moment is an emergency
23:38 Don't teach the skill during the overwhelm
24:33 Connection can look different for different children
26:02 Build skills after the nervous system settles
28:50 Jennifer's “layers of sound” mindfulness practice
31:28 Why mindfulness isn't simply about calming down
32:55 Teaching children to trust their bodies
34:09 The question parents can ask themselves in an anxious moment
35:22 Being with your child instead of immediately changing them

Topics Discussed
Childhood anxiety, nervous system regulation, co-regulation, sensory overwhelm, mindfulness, sensory anchors, parenting anxious children, autism and anxiety, caregiver regulation, emotional resilience, window of tolerance, connection, accommodation versus support, parental anxiety, body awareness, child development, and building capacity.

Key Questions Answered
1. Should parents try to eliminate their child's anxiety?
2. What does it mean to say “anxiety is information”?
3. When does normal childhood anxiety require additional support?
4. Why doesn't reassurance always work when a child is overwhelmed?
5. How are sensory overwhelm and anxiety connected?
6. What is a sensory anchor, and how can parents use one?
7. Why should parents regulate themselves before trying to regulate their child?
8. What's the difference between supporting anxiety and accommodating it?
9. Should parents teach coping skills during a meltdown or anxious episode?
10. How can children gradually develop greater capacity for uncomfortable feelings?

Resources

Jennifer Cohen Harper is a mindfulness and yoga educator, equine assisted learning facilitator, author, and founder of Little Flower Yoga, widely recognized for its trauma-informed school programming and training for educators and mental health providers. Jenn has spent two decades helping children and caregivers navigate anxiety and build inner resources. She is also the founder of Mindfulness with Horses, where she facilitates retreats for adults and families to build connection, compassion and courage. Jenn’s work has been featured in notable publications such as Psychotherapy Networker, The International Journal of Yoga Therapy, and The New York Times, and endorsed by thought leaders including Daniel Siegel, Mona Delahooke, Sharon Salzberg, and Rick Hanson. Jenn teaches regularly at leading retreat centers, offering practical, compassionate tools for embodied healing.

Learn more about Jennifer Cohen Harper and Little Flower Yoga & Mindfulness with Horses, including her work supporting children, families, educators, and communities through mindfulness, movement, and nervous system-informed practices. Explore Jennifer's Navigating Anxiety in Children program through the Omega Institute for a deeper exploration of helping children develop a healthier relationship with anxiety and build tools for navigating difficult experiences.

Subscribe to the INCHSTONES Podcast for caregiver stories, conversations about nonverbal autism, and honest perspectives on special needs parenting, profound autism, communication, behavior, sensory needs, caregiver wellbeing, nervous system regulation, education, and raising children with significant support needs.

Can one autism diagnosis adequately describe people whose abilities, challenges, communication, independence, and lifelong support needs may be radically different?

In this episode of the INCHSTONES Podcast, Sarah Kernion sits down with fellow autism mother Laurie Dove for a candid conversation about the autism spectrum, diagnosis, profound support needs, parenting, nervous system regulation, advocacy, and what happens when families with very different lived experiences try to talk honestly with one another.

This isn't a conversation about deciding whose autism is harder.
It isn't a competition.

It's a conversation about whether we can acknowledge the enormous heterogeneity within autism while maintaining dignity and respect for everyone who carries the diagnosis.

Sarah and Laurie explore how broad the autism spectrum has become and why that can sometimes make conversations about autism confusing for parents, autistic adults, clinicians, advocates, and the public. They discuss the importance of listening to autistic people who can describe their internal experiences while also making room for families caring for children and adults who cannot reliably communicate their needs and may require substantial lifelong support.
The conversation also moves from the abstract debate about autism into the minute-to-minute reality of caregiving.
For some families, everyday activities that appear simple from the outside can require enormous amounts of preparation, patience, regulation, and co-regulation. Sarah and Lori discuss the role a parent's nervous system can play in those moments and why understanding behavior requires looking beyond what is immediately visible.

They also wrestle with one of the most difficult dynamics in modern autism advocacy: how to disagree without dismissing another person's lived experience. Acknowledging profound autism does not require minimizing autistic people with lower support needs. Listening to autistic adults does not require ignoring parents caring for children with significant disabilities. And recognizing differences across the spectrum does not mean measuring whose life is harder.

There has to be room for more than one truth.
The goal of this conversation isn't to settle the autism debate.
It's to make the conversation itself more honest.
To ask another question.
To listen again.
And to remain curious enough to recognize that understanding autism may require us to hold experiences very different from our own.

In This Episode
00:00 Why difficult autism conversations need to happen out loud
01:59 What an autism diagnosis means today
05:50 Understanding the enormous differences across the autism spectrum
06:52 Why heterogeneity matters when talking about autism
12:02 Parents, advocacy, and making room for different perspectives
18:04 The minute-to-minute realities of autism parenting
19:31 When everyday life requires constant regulation and support
23:58 Bridging very different experiences of autism
25:41 Why we need to talk about what's actually happening
26:20 Autism isn't a contest or competition
29:56 Ask another question and listen again
Topics Discussed
Autism spectrum disorder, autism diagnosis, profound autism, autism heterogeneity, autism advocacy, special needs parenting, caregiver stories, nervous system regulation, co-regulation, daily caregiving, autistic lived experience, parental perspectives, support needs, autism identity, respectful disagreement, community, curiosity, and making room for different experiences across the autism spectrum.

Key Questions Answered
1. Can one autism diagnosis adequately describe people with radically different support needs?
2. What does heterogeneity within the autism spectrum actually mean for families?
3. Why can conversations about profound autism become contentious?
4. How can parents and autistic adults listen to experiences very different from their own?
5. Can profound support needs be acknowledged without diminishing autistic identity or dignity?
6. Why shouldn't conversations about autism become competitions over who has it harder?
7. What role does parental nervous system regulation play in everyday autism caregiving?
8. Why can seemingly ordinary daily routines become extraordinarily difficult for some autistic children and families?
9. How can the autism community have difficult conversations without dismissing one another?
10. What changes when we approach disagreement with curiosity rather than certainty?

Resources

Find all of Laurie's advocacy work on Instagram at Everyday Autism Essentials
Learn more about autism spectrum disorder, diagnosis, and the wide range of abilities and support needs associated with autism through resources from the Centers for Disease Control and Prevention and the National Institute of Mental Health.
For families navigating significant or lifelong support needs, explore research and advocacy conversations surrounding profound autism and the experiences of individuals who require substantial assistance with communication, safety, daily living, and care.
Subscribe to the INCHSTONES Podcast for caregiver stories, conversations about nonverbal autism, and honest perspectives on special needs parenting, profound autism, communication, behavior, sensory needs, caregiver wellbeing, education, advocacy, and raising children with significant support needs.