“We, we weren't letting those people push us around because, believe it or not, living with us 24 hours a day, we knew more than some of the doctors.” - Skip Vilas

In this heartfelt episode of the Child Life On Call podcast, host and CCLS Katie Taylor interviews Deb Vilas, an expert child life specialist, alongside her parents, Skip and Joyce Vilas. They share their story spanning over 60 years, recounting the challenges and triumphs of raising Deb, who was born with ichthyosis, a rare skin condition. The episode dives deep into the emotional and medical journey of Deb's early years, the evolution of parental advocacy, and the power of family and community support in navigating the complexities of pediatric healthcare.

Takeaways from Skip and Joyce:

The Power of Advocacy: Joyce and Skip's relentless advocacy for Deb's health and well-being, challenging medical professionals when necessary.

Importance of Parental Presence: The emotional and developmental impact of parental presence and touch, even in limited hospital circumstances.

Resilience and Adaptation: Deb's strength and resilience in the face of social challenges and medical hurdles.

Evolution of Pediatric Care: A reflection on how pediatric care has evolved, highlighting the necessity of family-centered approaches.

“The advocacy role is important. And of course, that's one of the roles that Child Life has for children." - Skip Vilas

Resources and Tips:

Foundation for Ichthyosis and Related Skin Types (FIRST): Provides support and resources for families dealing with ichthyosis. Learn more

National Conferences by FIRST: Opportunities for families to connect and share experiences.

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

Learn 6 Positions to Help Kids Feel Comfortable and Safe

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

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

Today's guest is Taylor Happley, a mom of a child with CHARGE syndrome.

"We need to figure out why and how to help these kids get the medical attention that they need."

In today's episode, Katie Taylor had an important conversation with Taylor Happley, whose son has CHARGE syndrome. Taylor’s prenatal journey was filled with miscommunication and emotional challenges. Taylor's story of learning about her son's diagnosis of CHARGE Syndrome in less-than-ideal circumstances underscores the need for healthcare professionals to provide information in ways that are both sensitive and supportive.

This conversation shines a light on the crucial role of empathy and effective communication in pediatric healthcare. Taylor also acts as a powerful reminder of the resilience of families navigating complex medical conditions.

"There's power in sharing stories, and that power multiplies when you can listen to other parents who have walked a similar path to yours."

What you can learn from this episode:

Communication is Key: Healthcare providers must deliver information compassionately to support families effectively during challenging times.

Parent Advocacy: Taylor's story highlights the importance of parental advocacy in navigating the complexities of a child's medical condition.

Importance of Support Networks: Connecting with other parents and finding community support can be crucial for managing the emotional toll of a child’s diagnosis.

Learning through Experience: Families often develop a deep understanding of their child’s condition, which can empower them to advocate effectively within the healthcare system.

Resilience and Hope: Despite the challenges, there is a powerful narrative of resilience and hope that can inspire other families in similar situations.

Resources and Tips:

CHARGE Syndrome Foundation: Provides invaluable resources for families and professionals

CHARGE Syndrome Foundation Support Group on Facebook

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

Learn 6 Positions to Help Kids Feel Comfortable and Safe during Medical Procedures

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

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

Today’s guest is Erin Prosser, an IEP expert consultant and a mom of a daughter diagnosed with STXBP1.

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.

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.

• IEP coaching for rare disease families

• Ketogenic Diet for Epilepsy

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

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.

Learn 6 Positions to Help Kids Feel Comfortable and Safe

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

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