226. Moms on a Mission: Raising Pediatric Feeding Disorder Awareness with Jaclyn & Athena from Feeding Matters
Release Date: 08/07/2024
228: Early Diagnosis, Advocacy and Equity: A daughter with Cystic Fibrosis- Nikki's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"We are the experts on our daughter and we deserve a say, and we deserve to be given the time to ask questions." – Nikki DeLeo 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 heartfelt episode, host and Certified Child Life Specialist Katie Taylor speaks with Nikki DeLeo, a mother of Taylor, her daughter who has Cystic Fibrosis (CF). Katie and Nikki discuss Nikki’s journey navigating her daughter Taylor's...
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227: Searching for a Diagnosis: A Rare Disease Mom and Advocate's Journey - ADCY5 Gay's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"If you have a doubt about something with your child or a family member, it's just really important to keep pushing through and get to the answers." – Gay Grossman In this episode, host Katie Taylor speaks with Gay Grossman, a passionate patient advocate and mother, about her journey navigating the rare disease world. Gay shares her experience of seeking a diagnosis for her daughter, advocating for genetic testing, and supporting families through complex medical and educational challenges. Her story highlights the importance of persistence, building a support network, and staying organized....
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226. Moms on a Mission: Raising Pediatric Feeding Disorder Awareness with Jaclyn & Athena from Feeding Matters
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"Combining my personal experiences as a mom with my professional role has given me a unique perspective on the challenges families face and the solutions they need." - Jaclyn Pederson In this insightful episode, host Katie Taylor speaks with Jaclyn Pederson, CEO of Feeding Matters and mother, and Athena Flicek, a dedicated mother of a child with feeding difficulties, about the complexities of pediatric feeding disorders. Jaclyn and Athena share their personal and professional experiences, emphasizing the importance of early intervention, advocacy, and comprehensive resources. They...
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225: Embracing Alopecia: A Mother’s Journey of Advocacy, Instincts, and Resilience-Lexi's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a 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...
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224: A son with Burkitt lymphoma at 8 year's old - Reina's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"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...
info_outline![223: [6 minutes] Big News: The Child Life On Call App is Now SupportSpot! show art](https://assets.libsyn.com/item/31831742?height=50&width=50)
223: [6 minutes] Big News: The Child Life On Call App is Now SupportSpot!
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
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 ...
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222: A son born at 25 weeks after loss, NICU NP mom and podcaster: Ashley O'Neil
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
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...
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221:Collaborative care between a Child Life Specialist and Social Worker with Annie Gunning and Haley Thomas at Hope for HIE
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
On today’s episode, Katie had the privilege of speaking with , a Certified Child Life Specialist and Grief Counselor, and , a Licensed Master Social Worker, on their collaborative efforts to support families at . Annie and Haley tailor their support to each family's unique needs, dedicating time to assess and implement the most effective strategies. 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...
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220: Know EXACTLY When Rounds is Happening with Q-Rounds with Dr. Michael Pitt
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
Episode Description: Join Katie Taylor, CCLS in this episode as she talks with the founder of 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. shares his insights on how healthcare professionals can better...
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219: 60 Years Later: Reflecting on a Daughter with Ichthyosis
Child Life On Call: Parents of children with an illness or medical condition share their stories with a 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...
info_outline"Combining my personal experiences as a mom with my professional role has given me a unique perspective on the challenges families face and the solutions they need." - Jaclyn Pederson
In this insightful episode, host Katie Taylor speaks with Jaclyn Pederson, CEO of Feeding Matters and mother, and Athena Flicek, a dedicated mother of a child with feeding difficulties, about the complexities of pediatric feeding disorders. Jaclyn and Athena share their personal and professional experiences, emphasizing the importance of early intervention, advocacy, and comprehensive resources. They discuss how Feeding Matters supports families and healthcare professionals, helping them navigate the challenges of feeding disorders. This episode provides a valuable perspective for both parents and child life specialists, highlighting the impact of community and support in overcoming these challenges.
Key Insights and Lessons:
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The Importance of Early Intervention: Identifying and addressing feeding disorders early can significantly reduce long-term psychosocial impacts on children.
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Advocacy and Empowerment: Parents must learn to advocate for their children, even when it feels overwhelming, to ensure they receive the necessary care and support.
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Comprehensive Support Systems: Organizations like Feeding Matters offer essential resources, peer coaching, and financial assistance to families facing pediatric feeding disorders.
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Understanding Pediatric Feeding Disorders: Awareness and education about feeding disorders are crucial for both parents and healthcare providers to properly support affected children.
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Mental Health Support: Prioritizing mental health for both parents and children is essential in managing the stress and challenges associated with feeding disorders.
Resources and Tips:
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Feeding Matters: An organization that supports parents of children with pediatric feeding disorders through advocacy, education, support, and research
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Peer-to-Peer Support: Connect with other parents through Feeding Matters’ peer coaching program for shared experiences and support.
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Financial Assistance: Due to the high costs and low insurance coverage of treating pediatric feeding disorders, Feeding Matters provides financial assistance.
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Annual Pediatric Feeding Disorder Conference: Attend or participate in the yearly conference organized by Feeding Matters to stay updated on the latest research and resources.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
- 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.