Inchstones with Sarah | Autism Advocacy & Caregiver Stories

Sarah Kernion | Profound Autism Mom and Caregiver Advocate
  • 5.0 (42)
  • Parenting
  • Updated Biweekly

INCHSTONES is a podcast about caregiver stories, nonverbal autism, and the realities of special needs parenting—hosted by Sarah Kernion, a mother raising two children with profound, non-speaking autism. Here, we talk honestly about the parts of autism and disability parenting that don't always fit neatly into an inspirational story: caregiver burnout, grief and acceptance, communication, sensory needs, advocacy, family dynamics, therapies, education, sibling relationships, and the uncertainty of raising children with significant support needs. But INCHSTONES is also about learning to recognize progress differently. Because when you're parenting a child with profound or nonverbal autism, the moments that change everything aren't always traditional milestones. Sometimes they're the inchstones: a new form of communication, a regulated transition, a moment of connection, a life skill practiced for the hundredth time, or something your child does today that once felt impossible. Through candid caregiver stories and conversations with parents, physicians, therapists, researchers, educators, advocates, and autistic voices, Sarah explores the questions families are actually asking about autism, special needs parenting, profound autism care, autism communication, caregiver mental health, autism therapy options, special education, sensory support, and life beyond childhood. There are no perfect answers here. There are real families, complicated conversations, practical insights, hard truths, unexpected joy, and a community that understands that progress doesn't have to look typical to matter. If you're raising an autistic child, parenting a nonverbal or nonspeaking child, navigating profound support needs, or looking for honest conversations about special needs family life, welcome to INCHSTONES. Because milestones aren't the only measure of a meaningful life.

  1. 1h ago

    What If Your Nonspeaking Child Understands More Than You Know? Hope & Faith with Katie Asher

    What if your nonspeaking autistic child understands far more than they can communicate? In this episode of the INCHSTONES Podcast, Sarah Kernion welcomes Katie Asher, co-author of The Book of Heaven with her nonspeaking autistic son, Houston, for a deeply personal conversation about profound autism, presuming competence, motherhood and Christian faith. Katie shares her family's journey, the communication experiences she describes with Houston, and how faith has helped her navigate grief, uncertainty and hope. Together, Sarah and Katie explore: Why speech and motor difficulties should not automatically be mistaken for a lack of understanding What it means to presume competence in nonspeaking autism The grief and guilt that can accompany disability parenting How faith and hope coexist with profound suffering The invisible emotional and spiritual lives of our children Why caregiver love is often expressed through ordinary, daily acts How much of a person are we missing simply because they cannot show us who they are in the ways we expect? Discover more caregiver stories at www.inchstonespodcast.com. Guest: Katie Asher is a writer, researcher, advocate, and mother. She and her son Houston were featured in season, one of The Telepathy Tapes. After over two decades of trauma her vaccine injured son, Houston, began communicating the depth of his intelligence, personality, courage, and faith, forcing her to reckon with the lies she had believed about severe autism and what is actually true and possible. This discovery led her to extensive research about quantum mechanics, physics, chemistry, biology, physiology, and scripture. Katie and her son Houston have explored how science actually confirms the spiritual realm, the truth of Scripture, and the promises of God. The Book of Heaven is their effort to bring understanding regarding severe autism and hope in all we have through the atonement of Christ and love of God.   To purchase a copy of A Book of Heaven: CLICK HERE Chapters (00:00:00) - Introducing Katie Asher and the Book of Heaven(00:01:58) - The Limits of Perception and Presuming Competence(00:02:42) - Early Assumptions and the Grief of Lost Years(00:06:09) - Letting Chaos Define What's Possible(00:07:58) - Body as Vessel, Motor Versus Intelligence(00:09:52) - Houston Finally Communicates at 22(00:11:46) - Guilt, Grief, and Houston's Words About Love(00:13:30) - Recognizing Brilliance Early and Lost Time(00:14:51) - Suffering, Purpose, and the Story of Joseph(00:16:38) - Embracing Suffering Without Being Consumed(00:18:24) - Hope as a Dangerous, Daily Choice(00:20:02) - The Miracle Moment: Houston Says 'Mama'(00:22:20) - Vitamin F: The Discipline of Remembering Faith(00:23:39) - Thoughts, Faith, and God's Unshakable Faithfulness(00:25:05) - Time, Prayer, and a New Understanding of Faith(00:26:27) - Caregiving as Advocacy and Living in the Present(00:29:30) - Closing Reflections: Believe, Believe, Believe

    What If Your Nonspeaking Child Understands More Than You Know? Hope & Faith with Katie Asher

  2. 6d ago

    What Happens When Disability Services Run Out? Lexi's Law with Brie Abate

    What happens when you've advocated for your child at every turn, but the disability services they need still aren't there? In this episode of the INCHSTONES Podcast, Sarah Kernion welcomes Brie Abate, founder of Lexi's Law Family Advocacy Network, to discuss the gaps in adult disability services, special education transition programs, and mental health care for young adults with complex needs. Brie's daughter Lexi is 22. After years of navigating systems that struggled to address her intellectual disability and mental health needs, Brie began advocating for legislation to close age-related service gaps. Together, Sarah and Brie explore: Why the transition from school to adult disability services leaves families struggling The challenges of accessing appropriate care for complex disabilities What Lexi's Law hopes to change Why parents shouldn't have to become experts in broken systems The difference between keeping our children safe and helping them live meaningful lives Because our children deserve more than services. They deserve lives filled with belonging, relationships, and possibility. Chapters (00:00:00) - Introducing Bri Abate and Lexi's Law(00:01:37) - Who is Lexi?(00:02:03) - Falling Through System Gaps After High School(00:03:23) - A Mother's Experience Navigating the System(00:04:42) - The Vision Behind Lexi's Law(00:06:03) - Building an Advocacy Community(00:07:53) - Sharing Hard Truths While Protecting Your Child(00:09:36) - Goals for Passing Lexi's Law(00:10:56) - Legislative Status and Next Steps(00:11:46) - Finding Strength as an Advocate Mother(00:12:52) - Closing Thoughts and Gratitude

    What Happens When Disability Services Run Out? Lexi's Law with Brie Abate

  3. Oct 15

    What If It's Not Bad Behavior? Autism, Sensory Needs & Regulation | Laura Petix

    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 Chapters (00:00:00) - Introduction and Episode Overview(00:01:47) - Won't vs Can't: Understanding Nervous System Overload(00:04:54) - Is It Sensory or Behavior? Reframing the Question(00:07:01) - The Role of Parents as Sensory Detectives(00:08:33) - Avoiding Hypervigilance and Choosing Battles(00:10:17) - Regulation vs Compliance in Therapy and Stimming(00:13:20) - Elopement: Safety, Nervous System Needs, and Flexibility(00:18:36) - No One-Size-Fits-All: Individualized Approaches(00:20:44) - Sensory Differences Between School and Home(00:23:29) - Three Things to Notice About Your Child's Nervous System(00:26:32) - Cumulative Dysregulation and Parental Self-Awareness(00:28:52) - Closing Thoughts: Curiosity Over Judgment

    What If It's Not Bad Behavior? Autism, Sensory Needs & Regulation | Laura Petix

  4. Oct 13

    Don't Let Fear Make Every Decision: Traveling with Autism | Jordana Izzo

    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. Chapters (00:00:00) - Introduction: Travel Anxiety and Disability(00:02:09) - Jordana's Story: From Disney Fan to Accessible Travel Director(00:04:47) - Reframing Difficult vs Impossible(00:05:37) - Setting Expectations and Finding Joy in Memories(00:08:24) - Planning Around Pressure Points: TSA, Practice Runs, and Walkthroughs(00:10:56) - The Importance of Downtime and Prioritizing Few Goals(00:13:40) - Managing Elopement Risk and Safety Precautions(00:16:23) - Asking the Right Questions and Personalized Travel Planning(00:17:19) - Group and Community Travel for Disability Families(00:18:54) - Balancing Needs of Siblings and Using Respite Support(00:20:59) - Closing Thoughts: Don't Let Fear Decide Everything

    Don't Let Fear Make Every Decision: Traveling with Autism | Jordana Izzo

  5. Oct 8

    The Parts of Profound Autism We Don't Say Out Loud | Jillian Eisloeffel

    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 Chapters (00:00:00) - Introducing Jillian and Bobby's World(00:01:45) - Who Bob Is Today(00:03:56) - The Overnight Onset of Self-Injury(00:06:10) - Broken Medical Systems and Access to Care(00:07:33) - The Emotional Toll on a Mother(00:09:07) - Finding Purpose Through Advocacy(00:11:17) - Navigating Bigger Advocacy Rooms(00:12:15) - Saying the Quiet Parts Out Loud(00:15:13) - The Isolation of In-Person Connection and Conferences(00:17:04) - Building Community and Retreat Ideas(00:19:42) - What Bob Has Taught Her Beyond Autism(00:21:44) - Closing Reflections and Gratitude

    The Parts of Profound Autism We Don't Say Out Loud | Jillian Eisloeffel

  6. Oct 6

    Belonging Is More Than Being Allowed in the Room | Brooks Herring on Disability & Music

    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. Chapters (00:00:00) - Introduction to Brooks Herring and the viral moment(00:01:24) - Growing up with brother Mark and finding connection(00:04:04) - The story behind the viral 'Every Rose Has a Thorn' video(00:06:02) - Nonverbal communication and the power of the moment going viral(00:07:36) - The Buddy Cruise and gaining perspective through disability community(00:08:56) - Presence, music therapy, and the healing power of music(00:11:48) - Making music venues welcoming for people with disabilities(00:13:37) - Sobriety and being a positive role model(00:14:03) - Controlling environment and celebrating small joyful moments(00:16:38) - Closing reflections on moments, meaning, and gratitude

    Belonging Is More Than Being Allowed in the Room | Brooks Herring on Disability & Music

  7. Sep 29

    Who Will Care for My Child When I Can’t? Building a Future for Profound Autism with Nicole Milo

    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? Chapters (00:00:00) - Introduction to Nicole Milo and House of Hope(00:01:21) - The emotional toll of raising a child with profound autism(00:03:37) - Sending Caleb to residential school and the guilt of distance(00:05:59) - Learning to surrender and trust caregivers(00:07:16) - Deciding to build a solution before the cliff hits(00:09:28) - Facing fear and committing to action despite uncertainty(00:12:00) - Faith, grace, and pushing through weakness(00:13:27) - Collaborative advocacy instead of adversarial fighting(00:16:10) - Give and take with schools and agencies(00:18:38) - Facing judgment from the community over resources(00:20:20) - The transition cliff and guardianship challenges(00:21:22) - Designing the micro residential model and staffing gaps(00:24:18) - Helping other families find hope and vision(00:27:25) - Closing reflections and gratitude

    Who Will Care for My Child When I Can’t? Building a Future for Profound Autism with Nicole Milo

  8. Sep 24

    Stop Holding It All in Your Head | Allison Dickin of Neuraparent

    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. Download NeuraParent Here and Get Started Today! 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. Chapters (00:00:00) - Introduction to Alison Dicken and Neuroparent(00:01:48) - Alison's Parenting Journey and Early Struggles(00:05:01) - Shifting Perspectives: Kids Do Well If They Can(00:06:41) - Believing Your Child and Trusting Your Observations(00:07:58) - Technology, Data Overload, and Optimization(00:09:18) - How Neuroparent's Check-In Feature Works(00:10:33) - Outsourcing Mental Load and Staying Regulated(00:12:05) - Parents as Experts and the Value of Validation(00:13:31) - Advocacy, Confidence, and Using Data to Empower Parents(00:15:39) - Vision for Neuroparent Across the Parenting Journey(00:17:06) - Closing Thoughts and Gratitude

    Stop Holding It All in Your Head | Allison Dickin of Neuraparent
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About

INCHSTONES is a podcast about caregiver stories, nonverbal autism, and the realities of special needs parenting—hosted by Sarah Kernion, a mother raising two children with profound, non-speaking autism. Here, we talk honestly about the parts of autism and disability parenting that don't always fit neatly into an inspirational story: caregiver burnout, grief and acceptance, communication, sensory needs, advocacy, family dynamics, therapies, education, sibling relationships, and the uncertainty of raising children with significant support needs. But INCHSTONES is also about learning to recognize progress differently. Because when you're parenting a child with profound or nonverbal autism, the moments that change everything aren't always traditional milestones. Sometimes they're the inchstones: a new form of communication, a regulated transition, a moment of connection, a life skill practiced for the hundredth time, or something your child does today that once felt impossible. Through candid caregiver stories and conversations with parents, physicians, therapists, researchers, educators, advocates, and autistic voices, Sarah explores the questions families are actually asking about autism, special needs parenting, profound autism care, autism communication, caregiver mental health, autism therapy options, special education, sensory support, and life beyond childhood. There are no perfect answers here. There are real families, complicated conversations, practical insights, hard truths, unexpected joy, and a community that understands that progress doesn't have to look typical to matter. If you're raising an autistic child, parenting a nonverbal or nonspeaking child, navigating profound support needs, or looking for honest conversations about special needs family life, welcome to INCHSTONES. Because milestones aren't the only measure of a meaningful life.

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