217: Navigating IEPs, Infantile Spasms, NICU & STXBP1 - Erin's Story
Release Date: 05/08/2024
3 Proven Strategies for Parents Navigating Pediatric Healthcare in 2025
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
Feeling alone after your child's diagnosis? Discover three powerful lessons that have changed how families find hope, support, and confidence while navigating pediatric healthcare. In this solo episode, child life specialist Katie Taylor distills eight years of conversations with hundreds of families into three essential takeaways every parent needs when thrust into the pediatric healthcare world. If you're overwhelmed by medical decisions, uncertain about switching providers, or searching for ways to support your child—and yourself—during hospital life, this episode offers tangible steps...
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A Father's Journey Through Loss, Healing, and the Birth of a Rainbow Baby: Jeff's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
In this profoundly moving and honest conversation, we sit down with Jeff Loving, a NICU dad, husband, and now an author, who shares the intimate and often unspoken grief experienced by fathers after pregnancy loss. Jeff walks us through the heartbreaking loss of his two sons, Davian and Jadon, the struggle to find empathy and appropriate medical care, and how these experiences ultimately led him and his wife, Cassie, to become fierce advocates for their future family. This episode is a raw look at marriage under immense stress, the importance of empathetic medical staff, and the redemptive joy...
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Understanding Homocystinuria (HCU): How one Mother Uncovered her Son’s Diagnosis
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
Melanie, mom to 12-year-old Masen, shares the unexpected path to her son’s diagnosis with Homocystinuria (HCU) after a routine eye exam revealed something “off.” What followed was months of uncertainty, a rare diagnosis few providers had even heard of, a crash course in low-protein diets and metabolic formulas, and two back-to-back eye surgeries to prevent further damage. With gentleness, honesty, and deep advocacy, Melanie describes how they adjusted as a family, how Masen built resilience, and how finding community changed everything. A story of early detection, parent intuition, and...
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Autism, Advocacy and the Power of a Medical ID Bracelet
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
Tara Cohen opens up about her son Will’s autism diagnosis and how it transformed her family and career. From navigating meltdowns to discovering AAC as a communication lifeline, Tara shares her honest reflections on parenting, resilience, and hope. What began as a search for a medical ID bracelet led to a career at —where she now helps other families feel safe and supported. This heartfelt episode reminds caregivers that advocacy grows from love and that even small acts of compassion can make a life-changing difference. Timestamps 00:00 – Introduction 03:10 – Early diagnosis...
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When Your Baby is Diagnosed with Type 1 Diabetes: Marlee's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
“My baby went from fussy to lifeless in hours—by the time we reached the PICU, they said he might have had six hours to live.” In this episode, TikTok Influencer and Medical Mom , a pediatric speech-language pathologist turned full-time mom, shares the whirlwind diagnosis of her 12-month-old son Bain with Type 1 diabetes and severe DKA, the traumatic hospital stay, and the everyday advocacy that followed. Raw, practical, and deeply hopeful. Why this episode matters Emotional clarity: what a Type 1 diagnosis really feels like in infancy Practical advocacy: scripts, choices, and...
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Brain Surgery for Drug-Resistant Epilepsy: Managing Infantile Spasms
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
Join us for an incredibly candid and informative conversation with Audrey Vernick, a passionate advocate and the Director of Patient and Family Advocacy for the Pediatric Epilepsy Surgery Alliance. Audrey shares the powerful 21-year journey of her son, Bennett, who suffered a stroke in utero and was later diagnosed with the catastrophic epilepsy known as Infantile Spasms. Audrey recounts the emotional process from the difficult labor and early concerns dismissed as normal reflexes, to the terrifying moment she saw his MRI and realized half of his brain was black due to a massive stroke. This...
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Speech Therapy at Home: Expert Tips to Help Your Child Communicate
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
"The excitement that the kids feel when they are seeing you... and they know today's session with Ms. Luba and they can't wait to see you." - Luba Kaplan When a child enters the medical system, parents often meet many specialists beyond doctors and nurses, including Speech-Language Pathologists (SLP). These professionals are vital members of the healthcare team, doing more than just helping with speech. SLPs, as Luba Kaplan explains, also explains how they look at every area of the child's development to ensure children are being fully supported. In this episode, we introduce Luba Kaplan, a...
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Type 1 Diabetes: Finding Community and Humor After Diagnosis
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
When Stacey’s toddler was diagnosed with Type 1 diabetes, her family’s world turned upside down. In this episode, she shares the early warning signs, the struggle of those first two weeks of injections, and how humor and community turned fear into resilience. Parents will gain hope, advocacy tips, and coping strategies for managing a chronic illness diagnosis. What You’ll Hear How Stacey recognized the 4 Ts of diabetes: Thirsty, Tired, Thinner, Toilet The reality of hospitalization, finger sticks, and injections with a toddler Coping strategies: medical play, humor, and...
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NICU Stay, Down Syndrome, and Infant Loss: A Grief Journey
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
In this incredibly personal and moving episode, we sit down with Teejay and Jon, the authors of the gentle children's book , to share the full, raw story of their daughter, Nadiya. Their journey began with an unexpected connection—a transatlantic online romance between Teejay in Australia and Jon in Canada—that quickly turned into a marriage grounded in a shared life and purpose. With Teejay's extensive background in early childhood development and their experience fostering a young man with Down syndrome, they felt prepared when Nadiya was diagnosed with Trisomy 21 (Down syndrome) early...
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Choosing the Best Children's Hospital: Why Rankings Matter (with Ben Harder)
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
Is the "best" hospital just about technology and surgical success? Ben Harder, the journalist who oversees the methodology and data for the U.S. News Best Children's Hospitals Rankings (2025), joins Katie to break down what truly defines quality in pediatric care. Ben shares his deeply personal family story—a tragedy 50 years in the past that drives his commitment to making data-driven information accessible today. This episode is a crucial guide for parents, explaining the three core pillars of the rankings: structure/resources, processes of care, and patient outcomes. We dive into why...
info_outlineToday’s guest is Erin Prosser, an IEP expert consultant and a mom of a daughter diagnosed with STXBP1.
"You don't see it coming. Being a rare disease parent hits you like a ton of bricks."
In today's episode Katie Taylor had the chance to speak with Erin Prosser, an IEP expert consultant and a mom navigating the complex world of pediatric healthcare due to her daughter Lucy's rare neurodevelopmental disorder. Erin shares her profound journey from a second-time, confident mom to a whole new role as a crucial advocate for her daughter's specialized needs. The challenges and triumphs of parenting Lucy led Erin to a new career path helping other parents ensure necessary services and support for their children. This episode dives deep into the realities and emotional challenges of parenting a child with significant medical needs, including the strategies Erin has employed to ensure her daughter receives the best possible care and education through effective IEP management.
"I think the best kinds of experts are those who have walked the path themselves. The best teachers are the ones who have been students and have had to have a process and said, this can be better and I want to fill it."
Key Insights and Lessons:
Early Identification and Advocacy: The importance of recognizing symptoms early, advocating for proper diagnosis, and persistently seeking appropriate treatments.
Navigating IEPs and Special Education: Listeners gain an in-depth look at navigating Individualized Education Programs (IEPs), where Erin uses her personal and professional experiences to help other parents secure necessary services and support for their children.
Community and Support Systems: The crucial role of community support and early intervention therapies in managing children’s condition and the value of connecting with other families facing similar challenges.
Mental Health and Coping Strategies: The significance of mental health for parents in similar situations is underscored, with therapy and community support as coping tools.
Resources and Tips:
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Listen to another episode of the Child Life On Call Podcast discussing rare diseases here.
Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.
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Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.