Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist Katie Taylor, Certified Child Life Specialist

“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.
"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: IEP coaching for rare disease families
Ketogenic Diet for Epilepsy
 
Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here. 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

April is Child Abuse Prevention Awareness Month. We have reposted this episode to bring awareness and give you tangible tools to speak with your kids about child abuse.
Today’s guest expert is Jane Donovan, who is a child abuse prevention advocate. 
"And like we say in child life, you have to prepare. So you know what to expect and you know how to cope with what's going to happen next." - Katie Taylor, CLOC
In this crucial episode, Katie Taylor is joined by a child abuse prevention advocate, Jane Donovan, to delve into the sensitive and vital topic of child protection within the healthcare system. The discussion focuses on how child life specialists can play a crucial role in identifying and responding to signs of abuse in children. Through detailed education on proper documentation, response strategies, and the importance of preparation, this episode provides essential insights for any adult from child life specialists to parents, underscoring the role of education in prevention and the duty to teach children how to keep their bodies safe.
Key Insights and Lessons: Importance of Proper Documentation: Understanding how accurate and detailed documentation can aid in protecting children and supporting further investigations. Recognizing Signs and Symptoms: Learning the subtle signs and symptoms of abuse to ensure early intervention and support for the affected children. Educational Role of Child Life Specialists: How child life specialists can educate and prepare themselves to better support children who may disclose abuse. Empowering Children: Strategies for teaching children about body safety and self-protection in a manner that is appropriate and empowering. Resources and Tips: Kids Count Players Safety Sheet for Parents and Caregivers Kids Count Safety Sheet for Kids Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter 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
 

"I've learned so much in this whole process. It's like you have a depth inside of you that resurrects as an advocate and high alert, and it lives inside of you when you need it."   -Aspen, Willa's Mom
In this episode of Child Life On Call, host Katie Taylor and guest Aspen share an intense and educational journey through pediatric appendicitis. Aspen recounts her daughter Willa's sudden illness, misdiagnosis, and the emotional rollercoaster of a ruptured appendix leading to urgent surgery. This story not only highlights the challenges and nuances of navigating pediatric healthcare, but also underscores the importance of parental intuition and the vital role of child life specialists in supporting both children and their families during medical crises.
Katie and Aspen dive into topics such as parental intuition, medical advocacy, and the impact child life can make. Aspen's experience stresses the importance of trusting your parental instincts when you feel the medical assessments are overlooking the correct diagnosis. The conversation also discusses the significant positive impact of child life specialists in managing a child's anxiety and discomfort through creative and empathetic interventions, as well as the emotional toll on parents and the necessity of finding support during a child's medical emergency. 
"I wish I would have pressed harder to say, let's just do a scan. What's the worst thing that's gonna happen?  Aspen, Willa's Mom
The resources mentioned in this episode are:
Child Life On Call: Access comprehensive guides and support for parents and healthcare providers on Child Life On Call.
Hospital Playrooms: The therapeutic benefits of play, the use of hospital playrooms to aid recovery and normalcy for hospitalized children. Read more about creating a comfortable and child-friendly environment in medical facilities here
Preparation Books: The importance of specialized books for children undergoing medical procedures to help them understand and cope with their experiences.
 
Engage with us on Instagram @ChildLifeOnCall for more stories from parents and practical tips. Check out our Amazon storefront for recommended products that support your child's development. Interested in enhancing your organization's pediatric care? Request a demo of the Child Life On Call app today!
About Katie Taylor, CCLS and Child Life On Call:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform revolutionizing pediatric healthcare by putting parents at the center of the medical journey. With over 13 years of experience as a certified child life specialist, Katie has made significant contributions to the field of child life and the families she’s served with over a decade of working at the bedside. She is an accomplished author, engaging child life and entrepreneurship speaker, and the Child Life On Call Podcast host. Katie's work emphasizes the vital role of child life services in supporting caregivers and enhancing children's medical journeys.
Learn 6 Positions to Help Kids Feel Comfortable and Safe During Procedures
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"Sometimes it's really therapeutic though to remember all that you have gone through because I feel like there are times when we look at each other and I'm like how did we get here?" -Tayler Ransome
We're grateful for our sponsor for this episode, Nestle Health Science, and are thrilled to share their incredible MyTubeFeeding.com/ChildLifeOnCall website, your go-to online resource for valuable information and support.
In this episode, Katie Taylor welcomes the Ransome family, known to many as the Ransome Fam on social media, where they share their daily life and the challenges of managing their son Sully's end-stage kidney disease.
From their initial shock and learning curve as medical parents to the powerful advocacy that led them to seek better care, the Ransomes' story is a beacon of resilience and hope. Their journey underscores the importance of community, the power of advocating for your child and finding joy amidst life's toughest challenges.
Key Insights: The critical role of advocacy in securing the best possible care for your child, is illustrated by the Ransome's transition to a more capable hospital.
How establishing a disciplined routine for medical care fosters a sense of normalcy and control.
The unexpected journey of becoming medical parents, including the steep learning curve and the importance of specific communication with family and friends.
Discovering inner strength, resilience, and the ability to find joy in the most challenging circumstances.
"Seeing how ceaseless his joy is... reminds me every day of the strength and beauty in our life, no matter the circumstances." – Tayler Ransome
Resources and Tips Shared in the Episode: The Ransome Family’s Daily Routine: A glimpse into managing home dialysis and medical care with love and dedication.
Advocating for Your Child in the Healthcare System: Tips from the Ransome's experience on how to navigate healthcare providers and ensure your child receives the best possible care.
Coping with the Unexpected: Strategies for dealing with the initial shock of a diagnosis and finding support.
We want you to join our community! Follow us on Instagram @ChildLifeOnCall for more stories, support, and inspiration.
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