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

On today’s episode, Katie had the privilege of speaking with Annie Gunning, a Certified Child Life Specialist and Grief Counselor, and Haley Thomas, a Licensed Master Social Worker, on their collaborative efforts to support families at Hope for HIE. Annie and Haley tailor their support to each family's unique needs, dedicating time to assess and implement the most effective strategies. Under the visionary leadership of Betsy Pilon, Executive Director of Hope for HIE, Annie and Haley are setting new standards in providing exceptional support to the families they serve. 
 
Key Takeaways
 
It’s important to meet families where they are. 
 
Finding ways to help prepare children for procedures with items you have at home empowers children and their families. 
 
Supporting the non-patient can be very impactful to families, this includes the siblings and parents. 
 
Loss and Bereavement support is crucial to families. Grief is not linear and the community as a whole can be affected by a loss. Annie and Haley support these families through monthly support groups. 
 
Collaborative support from one another professionally can create strong partnerships with the best interest of the family and child at heart.
 
When seeking help in a hospital setting, reach out to the person who makes you feel most comfortable. If they cannot provide the specific support you need, they will know who can and will direct you to the right resource.
 Learn more about Hope for HIE here.
 
 Parent Stories Matter
If you enjoyed this episode, we encourage you to listen to more CLOC episodes where we highlight the experiences of parents navigating the healthcare system. Each story offers valuable perspectives and practical advice on supporting and empowering families during their healthcare journeys.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Empower Parents & the Care Team with SupportSpot 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface.
92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better.
80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child.
73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare
Learn more here.
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
 
 
 
 

Episode Description:
Join Katie Taylor, CCLS in this episode as she talks with Dr. Michael Pitt the founder of Q-Rounds and a compassionate pediatrician (and magician!) dedicated to enhancing doctor-patient communication. 
As a child life specialist, Katie understands how crucial it is for families to not only be present during rounds but also to feel empowered and actively engaged in discussing the care plan with their team. When she learned about Q-Rounds, she knew she had to share this innovative approach with her parent and child life community.
Dr. Mike shares his insights on how healthcare professionals can better connect with their patients and the impact of these interactions on the overall healthcare experience. From amusing anecdotes with medical students to practical tips for introducing oneself to patients, Dr.  Mike's stories and advice are both enlightening and entertaining.
In This Episode, You'll Discover:




 

Dr Mike's Focys on Enhancing Doctor-Patient Communication:
Dr. Mike discusses his research on effective communication in healthcare, including a study conducted at the state fair on how patients prefer their doctors to introduce themselves. Q-Rounds Launching in Children's Hospitals Exciting news! Q-Rounds, a virtual queue that sends real-time notifications to patients, families, nurses, and other stakeholders of when to arrive for rounds and gives families the opportunity to join virtually if they can’t be there in person, is now being deployed in children's hospitals, with Dr. Mike at the forefront of this initiative. Parent Stories Matter
If you enjoyed this episode, we encourage you to listen to more CLOC episodes where we highlight the experiences of parents navigating the healthcare system. Each story offers valuable perspectives and practical advice on supporting and empowering families during their healthcare journeys.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Empower Parents & the Care Team with SupportSpot



85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more here.










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
 
 
 

“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