PCHD19, Autism + Epilepsy Diagnosis: The Motivation Behind a Caregiver Community

PCHD19, Autism + Epilepsy Diagnosis: The Motivation Behind a Caregiver Community

Author: Katie Taylor, Certified Child Life Specialist February 5, 2025 Duration: 29:48

"I had to teach myself to advocate – no one should leave a hospital with more trauma than they came with."- Julie Walters

We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website.

In this episode, Katie speaks with Julie Walters, a mom of two neurodivergent children, entrepreneur, and fierce advocate for inclusion and health equity.Julie shares her deeply personal journey navigating her daughter's epilepsy diagnosis, the challenges of parenting through complex medical experiences and how these experiences led her to create The Connected Parent – a resource hub empowering families to find critical services for children with medical complexities or neurodivergence. Julie's story is one of strength, determination and advocacy. 

Key Takeaways we learn from Julie and Katie's Conversation:

Becoming an Advocate Early:
Julie's passion for advocacy began in childhood, growing up with a mother who had schizoaffective disorder. She learned how to find resources through persistence and necessity.

💡 Navigating Medical Crises as a Parent:
Julie recounts the night she discovered her daughter's epilepsy through a life-saving baby monitor alert and the emotional toll of multiple seizures, hospital stays, and sleepless nights at the PICU.

🩺 Parent-to-Parent Support:
During one of the hardest times in the hospital, another mom introduced Julie to epilepsy resources – reinforcing the power of community and shared experiences.

🌐 Creating The Connected Parent:
Julie's frustration with the lack of easily accessible resources for medical and neurodivergent families led her to create The Connected Parent, a platform like Yelp for finding therapists, schools, camps, and more.

👩‍👧 Involving Her Daughter in the Mission:
Julie's daughter, Violet, plays an active role in the platform – from Instagram content to product ideas. Her participation highlights the importance of empowerment and shared purpose.

Links & Resources:
🔗 The Connected Parent: Visit TheConnectedParent.net

❤️ Ready to make hospital visits and medical journeys easier for your family? With SupportSpot, you get instant access to expert child life tips, emotional support, and resources right at your fingertips. For the next 7 days, try it FREE and discover how this app can reduce stress, ease your child's anxiety, and help you feel more prepared every step of the way. Subscribers have the opportunity to sign up for a free visit with a Child Life Specialist at CLOC to help you get the support you need from SupportSpot. Try it for free by clicking this link. 

 

🎙️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.

Instagram.com/childlifeoncall

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

 


Hosted by Katie Taylor, a Certified Child Life Specialist, Inside the Children's Hospital is a quiet space for the often unspoken journey of pediatric illness. This podcast moves beyond the clinical to explore the human heart of the hospital, offering conversations that feel more like a shared cup of coffee in a waiting room than a formal interview. You'll hear directly from parents and caregivers who articulate the complex mix of fear, resilience, and love they experience, while pediatric nurses, doctors, and therapists provide their unique professional perspectives on fostering healing and normalcy. The discussions naturally delve into the practicalities of family life disrupted, the emotional weight carried by all involved, and the small, profound moments of hope that sustain people. It’s a resource for anyone connected to a child’s health challenge, whether you're a family member seeking solidarity, a friend looking to understand, or simply someone interested in the intersection of medicine and humanity. Each episode aims to validate the listener's own feelings, whether they are in the midst of a crisis or reflecting on one, by presenting these authentic narratives without sugarcoating yet always with profound compassion. Tune in to find a sense of community and a deeper appreciation for the delicate, powerful work happening within those walls.
Author: Language: English Episodes: 100

Inside the Children's Hospital
Podcast Episodes
From Pharmacist to Mom: Navigating Type 1 Diabetes and Celiac Disease [not-audio_url] [/not-audio_url]

Duration: 40:48
What happens when the healthcare professional becomes the parent sitting on the other side of the diagnosis? In this episode, Katie Taylor sits down with Melissa Apa—a clinical pharmacist, diabetes educator, and mom—to s…
A NICU Dad Story: Life After a 25 Week Premature Birth [not-audio_url] [/not-audio_url]

Duration: 49:52
"I kept telling her, 'We've got this.' And inside, I had no clue what was coming next." What does it look like to be "the strong one" when your world is falling apart? In this episode, Katie Taylor sits down with Jared M…
Trisomy 13: Challenging the Narrative and Choosing Hope [not-audio_url] [/not-audio_url]

Duration: 59:45
What happens when a diagnosis labeled "lethal" doesn't tell the full story? In this episode of Inside the Children's Hospital, Katie Taylor sits down with Nicole, a mom of five, who shares her daughter Charlotte's journe…
NICU, Trach and Home Care: One Family's Journey to Stability [not-audio_url] [/not-audio_url]

Duration: 50:41
What does it look like when life changes in an instant—and a family learns to navigate the unimaginable? In this episode of Inside the Children's Hospital, Katie Taylor sits down with Marah, a mom of four, who shares her…
When a Parent Has Cancer: What Kids Understand Before We Say It [not-audio_url] [/not-audio_url]

Duration: 47:03
What happens when your child already senses something life-changing—before anyone has found the words to say it out loud? When serious illness enters a family, children often understand more than we realize. And for care…