Caregiver Stories: Telling the Truth About Disability Without Losing Hope | Elyse Davis

Caregiver Stories: Telling the Truth About Disability Without Losing Hope | Elyse Davis

Can you tell the truth about disability parenting without losing hope? In this episode of Inchstones, Sarah Kernion sits down with caregiver advocate Elyse Davis to explore caregiver stories, neurodivergent parenting, grief, resilience, and why honest conversations help families feel less alone. 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 [elyse%20%7C%20disability%20motherhood%20+%20diet%20cokes%20(@busybeingelyse)%20%20Instagram%20%C2%B7%20busybeingelyse%205.5K+%20followers] 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.

Caregiver Stories: What My Daughter's Disability Taught Me About Living with Evan Rosenblum

What happens when the life you planned disappears overnight? In this episode of Inchstones, Sarah Kernion sits down with former TMZ executive producer Evan Rosenblum to explore caregiver stories, disability parenting, neurodivergent families, and how raising a child with profound disabilities transformed his understanding of purpose, fatherhood, and joy. When Evan Rosenblum's daughter Sydney arrived at just 25 weeks gestation, everything changed in an instant. After 143 days in the NICU, multiple surgeries, a traumatic brain injury, and a long list of medical diagnoses, Evan found himself navigating a reality he never imagined while desperately trying to hold onto the life he thought he was supposed to have.  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 [https://evanrosenblum1.substack.com/], where he writes about fatherhood, disability, caregiving, and finding meaning through unexpected life experiences. Subscribe to the Inchstones Podcast [http://www.inchstonespodcast.com] for more conversations about autism advocacy, caregiver stories, and neurodivergent parenting featuring parents, clinicians, researchers, and advocates helping families thrive.

Parent the Child, Not the Diagnosis | Nora Canzoneri on Autism, Acceptance, and Letting Go

An autism diagnosis changes everything—but it should never become the only thing you see. In this episode of Inchstones, Sarah Kernion sits down with longtime friend and autism mom Nora Canzoneri for an honest conversation about autism advocacy, caregiver stories, and learning to parent the child before the diagnosis. ⸻ 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. ⸻ 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 ⸻ Listen to more episodes of the Inchstones Podcast [http://www.inchstonespodcast.com], 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.

Caregiver Stories: Choosing Love Through the Unexpected Journey of Motherhood with Valerie Probstfeld

Every mother begins with expectations. Few of us imagine how deeply motherhood will transform our identity. 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. [https://www.tomomistolove.com/] 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. [https://inchstones.substack.com/]

Beyond the Autism Diagnosis: Seeing the Child Before the Label | Dr. John Gaitanis

What if autism isn’t one condition to treat, but many different biological stories waiting to be understood? 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. [http://www.meadowbiosciences.com] 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 [http://www.inchstones.substack.com].