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

  "I feel like I owe it to him to explore other avenues. Acceptance doesn’t mean giving up; it means continuing to learn and adapt."- Lexi   
In this episode of Child Life On Call, Katie Taylor speaks with Lexi, a devoted mother of two, about her family's journey with alopecia universalis. Lexi shares the emotional challenges and triumphs of supporting her three-year-old son, Penn, who was diagnosed with this rare condition. Through sharing her story, Lexi highlights the power of parental instincts, blending Western and Eastern medicine, and advocating for her child's unique needs. Her story offers valuable insights for parents and professionals alike, emphasizing the power of resilience and community in pediatric healthcare.



Key Insights:
Early Diagnosis and Gut Instincts: Lexi's intuition played a crucial role in identifying her son's alopecia early on, showcasing the importance of parental instincts, and advocating for them, in healthcare.
Navigating Emotional Challenges: Lexi discusses the emotional impact of her son's diagnosis and how her husband’s positive outlook has been a source of strength for their family.
Advocacy and Medical Care: The necessity of finding specialized dermatologists and the integration of Western and Eastern medical practices are highlighted as key components of Penn's care.
Coping with Public Reactions: Lexi shares strategies for handling public reactions and educating others about alopecia, aiming to foster empathy and understanding.
Community and Support Systems: The episode underscores the value of support systems, both within the family and from the wider community, in navigating a rare medical condition.
 
Resources and Tips:
National Alopecia Areata Foundation: Connect with support groups, explore treatment options, and find resources tailored for alopecia families. 
https://www.naaf.org/youth-mentor-program/: Support group pairing kids with mentors that Lexi mentioned.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Links and Resources:
SupportSpot Website Download SupportSpot iOS or Android







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

"My immediate thought was I'm going to lose my son. That was where my head went immediately." - Reina Introduction
In this episode of Child Life On Call, Katie Taylor talks with Reina, a devoted mother from Nashville, Tennessee. Reina shares her heartfelt journey of caring for her son Elliott, diagnosed with Burkitt lymphoma at eight years old. She discusses the emotional and practical challenges faced during Elliott's treatment, the importance of advocating for her child's needs, and the support systems that played a crucial role in their journey. Reina’s story highlights resilience, the power of community, and the significance of effective communication in pediatric healthcare.
Key Insights:
Early Diagnosis and Challenges: Elliott's diagnosis journey began with a seemingly minor issue, leading to the discovery of a large mass in his tonsil, which was diagnosed as Burkitt lymphoma.
Importance of Advocacy: Reina emphasizes the critical role of parental advocacy, including meticulous record-keeping, clear communication with medical staff, and involving Elliott in his care decisions.
Support Systems: The support from family, the school community, and the involvement of a Child Life Specialist were invaluable in navigating the complexities of treatment and providing emotional and practical help.
Emotional Coping: Reina discusses the emotional toll of her son's illness, the importance of mental health support, and the strategies used to help Elliott cope with the changes and challenges of his treatment.
Creating Resources: Inspired by their experience, Reina has created children's books to help other families navigate similar journeys, emphasizing the importance of involving children in their care and providing accessible resources.
 
Resources and Tips:
"When a Kid Like Me Fights Cancer" and other resources for helping children understand and cope with cancer.
Read "A Brave Kid's Guide to Lymphoma" and"A Brave Kid's Guide to Leukemia"  to help your child cope with a lymphoma or leukima diagnosis. 
To learn bout the mission of Hello Brave, founded by Reina, visit their website here.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Get the SupportSpot app! Now available for ALL parents without a hospital code!
SupportSpot Website Download SupportSpot iOS or Android







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:
In this special impromptu episode, Katie Taylor, Certified Child Life Specialist and CEO of Child Life On Call, shares some exciting news! We're rebranding our beloved Child Life On Call app to SupportSpot.

Tune in to hear why we made this change and what it means for you and your family. Plus, get a sneak peek into the new features and benefits you can expect from SupportSpot. This is an announcement you won’t want to miss!
Show Notes:
[00:00] Introduction
Welcome from Katie Taylor Brief overview of the exciting announcement [00:30] Reflecting on the Journey
Katie’s background and passion for child life services The origin of the Child Life On Call podcast and its impact [01:00] The Big Announcement
Introducing the rebrand: Child Life On Call app is now SupportSpot Reasons for the change: Enhanced Clarity: SupportSpot better reflects the app’s purpose and broadens its appeal Broader Appeal: Communicates the app as a comprehensive family support resource during medical experiences [02:00] The Power of Prepared and Empowered Parents
The importance of parents knowing what to expect and how to advocate for their children The impact of child life services beyond children’s hospitals [03:00] The Evolution of Child Life On Call
From podcast to app: How Child Life On Call grew to SupportSpot The incredible journey and feedback from parents and care teams [04:00] Features and Benefits of SupportSpot
Overview of new features and improvements Access to resources, child life tips, procedure guides, therapeutic activities, and more [05:00] How to Get SupportSpot
Available for download on iOS and Android Keeping the price low to ensure accessibility for all families Encouraging parents to spread the word [06:00] Continuing Hospital Partnerships
Ongoing collaboration with hospitals to ensure families have access to the app at no cost The vision for future growth and impact [06:30] Conclusion
Katie’s promise to parents: Empowerment and confidence in healthcare situations Closing remarks and gratitude for the support Links and Resources:
SupportSpot Website Download SupportSpot iOS or Android Follow us on Instagram
Don’t forget to subscribe, rate, and review Child Life On Call on your favorite podcast platform. Your support helps us reach more families and provide them with the tools they need for a positive healthcare experience.




 

In this episode host Katie Taylor sits down with Ashley O’Neil, a family nurse practitioner and a NICU mom. Ashley shares her journey when her son, Colin, was born at 25 weeks gestation and the following 183 day NICU stay.  Listen to hear how she balanced work, advocating for her son’s needs, coping with personal loss, as well as providing invaluable support and resources to other families in similar situations.
 
"The hardest part isn't being in the NICU; it's the real advocating that starts after discharge." - Ashley O'Neil  
Key Insights: Early Challenges: Ashley shares the difficulties of having a baby born at 25 weeks and the emotional turmoil of seeing healthy babies at work while her own child struggled in the NICU.
 
Advocacy: Emphasizing the importance of advocating for her child, Ashley highlights how she meticulously kept records, attended rounds, and communicated her son's needs to the medical staff.
 
Support Systems: The significance of community support and online groups played a crucial role in her journey.
 
Resilience: Despite being told what her son might not achieve, Ashley remained steadfast in her belief in his potential, advocating for her son, and celebrating every milestone and victory.
 
Navigating Systems: The real battle often begins after leaving the NICU, dealing with insurance, medical equipment, and ensuring her child receives the necessary care and resources.



Resources and Tips Ronald McDonald House: Provides essential housing and support for families with hospitalized children. 
Insurance Navigation: Practical advice on dealing with insurance companies and securing 
 
Kids Grief Support:  Find information and resources to support grieving children.
 
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Links and Resources:
SupportSpot Website Download SupportSpot iOS or Android







85% of users report high satisfaction, appreciating the SupportSpot App’s comprehensive resources and user-friendly interface. 92%  of parent users say the SupportSpotApp helped them understand medical procedures and treatment better. 80% of parents believe the SupportSpot App has contributed to better health outcomes for their child. 73%  of parent users believe the SupportSpotApp 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
 
 

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