Child Life On Call: Parents Of Children With An Illness Or Medical Condition Share Their Stories With A Child Life Specialist

"Trust your gut. If your parent radar comes up and says this is not right, keep pushing." – Kim   In this episode, Katie Taylor speaks with Kim Miller, a mother whose journey navigating her son Grant’s diagnoses of juvenile arthritis reshaped her life. Kim shares how her relentless advocacy led her family through unimaginable challenges, including managing chronic pain and finding the right medical care. Her inspiring story unfolds from the hardships of watching her son struggle to walk, to his incredible transformation into an NFL player. The episode highlights the critical role of trusting your parental instincts, advocating for your child, and finding innovative ways to manage chronic pain, offering hope to parents in similar situations.   Key Insights: Trust Your Instincts: Kim emphasizes the importance of trusting your gut as a parent and advocating persistently when something feels wrong, despite resistance from doctors. Holistic Care: The integration of multiple specialists and specialties working toge

"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 diagnosis from day one, the emotional rollercoaster of becoming a medical parent, her advocacy for Taylor's care, and the importance of equity in newborn screenings for CF. With Taylor's unique case, Nikki discusses the challenges and triumphs of managing a life-changing diagnosis, emphasizing the role of medical teams and community support in fostering resilience and hope.   Key Insights: The Importance of Early Diagnosis: Nikki emphasizes

"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. Gay’s insights provide invaluable advice for both child life specialists and parents and caregivers dealing with rare diseases. Key Insights: The significance of early genetic testing in providing crucial information and guiding treatment decisions. The importance of building a support network to navigate the medical and educational challenges. Staying organized and persistent in the face of numerous medical consulta

"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: The Importance of Early Intervention: Identifying and addressing feeding disorders early can signi

  "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 imp

"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 comm

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 experien

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 i

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

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 dis

“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 h

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:

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

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 childre

"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 di

"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 th

In This Episode: Katie Taylor goes off the beaten path in this special episode to share a profound moment of inspiration that struck her. This episode is a heartfelt message to child life specialists, students, and parents, emphasizing the importance of showing up as you are, without the burden of imposter syndrome. Key Highlights: A Different Kind of Episode: Katie shares her spontaneous thoughts that came from a moment of inspiration, promising that the usual stories from the field and parental perspectives will return in future episodes. Message of Empowerment: The core message is about overcoming the misconception of imposter syndrome. It’s about recognizing that being in the room is an acknowledgment of one’s worth and contributions. Inspirational Source: Katie discusses insights gained from listening to Reshma Saujani, CEO of Girls Who Code, and her philosophy of bravery over perfection, which struck a chord with Katie in relation to the child life profession and parental involvement in healthcare. For

"As a child life specialist, watching my tiniest patients grow and accomplish so many things is my favorite part of the job." - Julie, Certified Child Life Specialist Episode Summary: In this heartfelt episode of Child Life On Call, we celebrate Child Life Month by diving deep into the dedicated world of child life specialists and the resilient families they support. Host Katie Taylor talks to Julie, a remarkable child life specialist with 18 years of experience in the renal service at Texas Children's Hospital in Houston, Texas. Julie shares her profound journey of supporting children with end-stage renal disease and their families, emphasizing the incredible growth and accomplishments of her patients, from NICU discharge to life milestones like graduation and beyond. This episode shines a light on the unseen challenges and invisible diseases, offering a beacon of hope and understanding for families navigating similar paths. Key Insights and Lessons: The Power of Specialization: Julie's dedication to the re

"Having a medically complex child, it's like everything's fine. And then, you know, we have a morning where we've thrown up a lot or our blood pressure is too low, and it just doesn't look good. You just never know what you're going to get." - Lyndsey, Episode 211 In this deeply moving episode, we are joined by Lyndsey, who shares the compelling journey of her son James's battle with post-urethral valves before birth, leading to kidney issues and eventually a kidney transplant. Through her narrative, we learn about the rollercoaster of emotions, the challenges of navigating the healthcare system, and the critical role of child life specialists in providing support. Lyndsey's story is one of immense courage, the power of hope, and the transformative impact of compassionate care on families navigating pediatric health challenges. "Having a medically complex child is like everything's fine until it's not." - Lyndsey Key Insights: The Crucial Role of Early Diagnosis: Lyndsey's experience underscores the importan

"Love is the most powerful force in the universe, and the invisible string is a testament to the connections that bind us all." - Patrice Karst In this special Child Life Month episode, Katie Taylor sits down with Patrice Karst, the beloved author of "The Invisible String" and several other impactful books. They explore Patrice's journey from personal challenges to becoming a source of comfort and connection for families worldwide. This conversation delves into the power of storytelling in addressing themes of separation, loss, and the enduring strength of love. Patrice shares her inspiration behind "The Invisible String" and its profound impact on both children and adults, emphasizing our universal connectedness and the healing power of love. "The messages of love and connection I write about are not just for children; they resonate with the inner child in all of us." - Patrice Karst Key Insights or Lessons Learned: The concept of "the invisible string" as a universal metaphor for love and connection that t