Episodit
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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 FacebookWhether 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
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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
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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
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"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
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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 Child Life Specialists: A call to recognize the value they bring to healthcare settings, emphasizing that healthcare teams are fortunate to have them participate. For Students: Encouragement to embrace their internships and opportunities without doubting their deservedness or capability. For Parents: An affirmation of the crucial role parents play when involved in their child’s care, emphasizing that their presence inherently improves the healthcare experience for their child.Katie wraps up with a reminder of the importance of showing up authentically in every room you find yourself in, celebrating Child Life Month, and expressing gratitude to her listeners.
Resources and Next Steps: Visit Child Life On Call for resources tailored to parents, professionals, and healthcare providers. Explore opportunities for Child Life Specialists, including PDUs and support through the Child Life Circle. Parents can find a starter kit to navigate their child's healthcare journey. Healthcare professionals are invited to take a clinician course to enhance pediatric care skills.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
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"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 renal unit for nearly two decades highlights the impact of specialized care and deep knowledge in supporting families through long-term medical journeys. Invisible Illness Awareness: Kidney and renal diseases are often "invisible illnesses," where children may not appear sick externally, challenging families to seek and receive support from their communities. Advancements in Treatment: Remarkable advancements in transplant medicine and the introduction of new facilities like a dedicated dialysis unit represent hope and progress in the care of patients with kidney disease. Comprehensive Family Support: The role of child life specialists in educating and supporting families beyond medical interventions, helping them navigate school, social challenges, and encouraging participation in community events. Celebrating Growth and Achievements: Witnessing the development and achievements of patients, such as learning to walk, talk, and engage with their favorite activities post-transplant, underscores the transformative impact of child life specialists."We actually just opened up a brand-new dialysis unit at our hospital...watching that come to fruition from having been a dream of the department for so long to actually happening has been amazing." - Julie
Resources and Tips: Kid's Health: Offers kid-friendly explanations and illustrations about medical conditions and treatments. National Kidney Foundation: Provides extensive resources and information for families dealing with kidney disease. Kidney School: An educational platform with modules for healthcare team members and families to learn about kidney disease.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
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"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 importance of prenatal screenings and the challenges of facing unexpected medical conditions before birth. Support Systems Are Key: The journey highlights how family, medical teams, and child life specialists form a crucial support network that helps navigate the complexities of a child's medical care. Resilience in the Face of Uncertainty: The family's story is a testament to the resilience required to face the unknown and advocate for a child's health and well-being. The Importance of Child Life Specialists: Lyndsey's story reinforces how child life specialists play a vital role in supporting both the child and the family through medical procedures, hospitalizations, and the overall healthcare journey. How Child Life Specialists Can Help: Understanding Post-Urethral Valves: Providing educational materials to help parents understand complex medical conditions. Building a Support Network: Encouraging families to connect with others through support groups and communities. Coping Strategies: Sharing resources and strategies for families to manage stress and maintain emotional well-being.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:
Get 20% of toys, fidgets and more at Smilemakers.com using ONCALL20 at checkout
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
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"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 transcends physical presence and even loss. The importance of acknowledging and discussing feelings of loneliness and the power of finding one's inner best friend, as explored in "Ruby and Lonely." How creativity and storytelling can be therapeutic, providing solace and understanding in times of grief and separation. The role of child life specialists in utilizing literature like Patrice's to foster emotional safety and understanding among families facing medical challenges."Every letter I receive is a reminder of the profound impact stories can have on healing and connection." - Patrice Karst
Resources and Tips Shared in the Episode: "The Invisible String" by Patrice Karst: A must-read for anyone seeking to understand and teach about the bonds of love. Other books by Patrice Karst Child Life On Call App: Explore this invaluable tool for additional support and resources for navigating pediatric healthcare challenges. Request a Demo.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
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Advocacy, Compassion, Innovation: Elise's Child Life Journey "Working with children with medical complexity and developmental differences isn't just a job; it's rooted in who I am." - Elise Cofer, CCLS Research Article: Fitting the Pieces Together
Lead Researcher: Elise Cofer
In this captivating episode of Child Life On Call, Katie Taylor sits down with Elise, a Nashville-born child life specialist who brings her passion and dedication to the hematology oncology unit at Vanderbilt. Elise's journey into child life, driven by a background deeply embedded in caring for children with special needs, showcases her commitment to enhancing pediatric healthcare. Through her story, listeners will gain insights into the challenging yet rewarding world of a child life specialist. Elise discusses the evolution of her career, her groundbreaking research on caregiver support, and her vision for a more inclusive and personalized approach to pediatric healthcare.
"Elise's insights remind us of the critical role child life specialists play in not just supporting children, but whole families through their healthcare journeys." - Katie Taylor, CCLS Key Insights and Lessons: The Holistic Approach: Elise's interdisciplinary background highlights the importance of integrating care for children with special needs, emphasizing a holistic approach to their well-being. Research as a Pathway for Change: Elise shares her research findings on caregiver experiences, revealing a profound need for targeted child life interventions that support not only the child but the entire family unit. Advocacy and Empowerment: Through her work and research, Elise emphasizes the power of advocacy by caregivers and the role of child life specialists in empowering families to navigate the healthcare system effectively. The Importance of Listening: One of the most critical skills in child life work, according to Elise, is the ability to listen—to truly hear the needs and wishes of children and their families, thereby tailoring support to each unique situation. Recommendations: For Families: Elise recommends resources that provide guidance on navigating the healthcare system for children with medical complexities, emphasizing the importance of community support and advocacy. For Child Life Specialists: Insights into integrating research findings into practice, enhancing the child life specialist's toolkit for supporting families dealing with medical complexities.🌟 Connect and Share Your Story: Join our community on Instagram @ChildLifeOnCall to share your journey and find support from others navigating similar paths.
As we continue to explore the depths of pediatric healthcare through stories like Elise's, we are reminded of the resilience, courage, and love that drive individuals to make a significant impact. Stay tuned for more inspiring episodes from Child Life On Call.
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
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In this profound episode, we join Katie Taylor as she delves into the inspiring journey of a military family navigating pediatric healthcare for their two medically complex children. Through the voice of the remarkable mother, Kat, we explore the unique challenges and triumphs of securing continuous, specialized care amidst the frequent relocations and complexities inherent to military life. Kat shares her experiences with advocacy, the importance of resilience, and the deep bonds forged through their family's journey, offering invaluable insights into the realities faced by military families dealing with medical complexities.
"Every challenge we've faced has only amplified our strength as a family. Our journey is a testament to the power of love, persistence, and advocacy." - Kat
Key Insights and Lessons:
The critical role of advocacy in navigating pediatric healthcare, especially within the military system. Strategies for explaining medical treatments and changes to young children in a way that fosters understanding and cooperation. The importance of building a supportive healthcare team that listens and adapts to the unique needs of each family. Implementing coping mechanisms for children, like the "Brave Box," to make medical procedures more manageable and less intimidating. Recognizing and nurturing the individual strengths and personalities of each child amidst their medical challenges.Resources and Tips:
The Sticky Notes Diary: Follow Kat's blog for more insights and support for families of medically complex children in the military. Visit The Sticky Notes Diary. Child Life On Call Resources: Access a variety of resources tailored for parents, professionals, and healthcare providers to navigate pediatric healthcare experiences. Explore ResourcesCall to Action:
Connect on Instagram: Join our vibrant community @ChildLifeOnCall for daily inspiration, stories, and support. Explore Our Amazon Storefront: Discover curated resources to support your family's healthcare journey. Shop Now Request a Child Life On Call Demo: Learn how our app can revolutionize pediatric healthcare experience in your organization. Request a DemoLet's continue to support each other and share our stories, fostering a community where no one feels alone in their journey. Tune in next week for another episode filled with hope, courage, and the collective wisdom of our Child Life On Call family.
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
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What if we could prevent more kids from having to have invasive surgery? During this episode, we are joined by Katie Corrado, who invented a product that works as an alternative to surgery for babies and children. Tune in to hear how her first-hand experience of watching her child struggle with an umbilical hernia led her to an innovative solution that she now offers to other families facing the same challenge. You’ll also learn why Katie is an advocate for proactive rather than reactive medical solutions and how her passion for connecting with kids led her to work as a Physical Therapist rather than a Paediatrician. Join us today to hear all this and more.
Watch the episode on YouTube
Key Highlights:
The Penn State Dance-Off Fundraiser and all the connections it facilitates.
Katie’s journey to becoming a Doctor of Physical Therapy with a Board Certification in Pediatrics.
The story of an out-of-the-box solution that Katie developed to resolve her son’s umbilical hernia, now known and sold as The Navel Cradle.
Differentiating between reactive and proactive medical care and testing non-invasive solutions.
Quotes:
“The resiliency of children is just unmatched and it is amazing to be a part of that.” — Katie Corrado [0:11:50]
“The idea that the best advice to me was to do nothing [about my son’s hernia] was awful. I felt so helpless.” — Katie Corrado [0:24:46]
“Just because there isn’t a treatment for something yet doesn’t mean that there’s never going to be one.” — Katie Corrado [0:27:41]
Resources Mentioned:
Kate Corrado’s LinkedIn: https://www.linkedin.com/in/cathlyn-corrado-pt-dpt-pcs-00305326/
The Navel Cradle: https://www.navelcradle.com/
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
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In this special episode of Child Life On Call, we flip the script as Emily Martinec interviews our very own founder, Katie Taylor. Dive into Katie's journey from child life specialist to tech entrepreneur, exploring the roots of Child Life On Call, the challenges and triumphs of building a company, and how her upbringing shaped her mission to support families and healthcare professionals alike.
"Child Life On Call is not a technology replacement for child life specialists... It's a tool to enhance and expand what Child Life Services is." — Katie Taylor
Episode Highlights:
Katie's personal story and the pivotal moments that led to her career as a child life specialist and entrepreneur. The evolution of Child Life On Call, including its challenges, successes, and the impact it aims to have on healthcare experiences for families. Insights into the future of the child life profession and how technology can play a role in enhancing family-centered care.Resources Mentioned:
Child Life On Call app and website: A hub for resources, support, and community for families navigating healthcare experiences. ACLP (Association of Child Life Professionals): Mentioned in the context of the child life profession's growth and challenges.Katie emphasizes the importance of support, both within families and the healthcare community, to navigate the complexities of medical experiences. She highlights the role of Child Life On Call in empowering families and professionals with resources and support.
Explore Child Life On Call's resources, join the Child Life Circle for professional support, and share their stories to strengthen the community. Visit Child Life On Call to learn more and get involved.
This episode is a testament to the power of resilience, innovation, and community in transforming healthcare experiences for children and families.
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
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In this episode, we're honored to have Jessica Correnti, a certified child life specialist and a bereaved mother, share her profound insights on grief. Jessica's dual perspective offers a rich understanding of the multifaceted nature of grief beyond the loss of a loved one. She discusses her personal journey, the importance of recognizing and naming grief in children, and how this awareness can empower kids to navigate their emotions.
Key Highlights:
Jessica's background as a child life specialist and how her personal loss has shaped her professional and personal life.
The concept of "grief bombs" and the physical manifestations of grief.
How grief evolves with children as they grow, and the importance of reprocessing their emotions at different stages of development.
The significance of creating space for children to express and process grief through activities and conversations.
Jessica's contributions to the field through her books and private practice, aim to enhance grief literacy among children and adults.
Take a look at Katie’s favorite books to help kids grow, thrive and learn!
Resources Mentioned:
Jessica Correnti's Instagram: @KidsGriefSupport
Download 38 Activities to Help Grieving Kids Here!
Website: kidsgriefsupport.com
ABCs of Grief series by Jessica Correnti.
For anyone looking to deepen their understanding of child grief support and the power of connection through shared experiences, this episode is a must-listen. Join us in exploring the complexities of grief with empathy, knowledge, and hope.
Other recommended episodes on this topic:
Episode 197 | James’ Story - 5 Years with a Remarkable Son (tw: death)
Episode 173 | Dr. Korie Leigh – What Does Grief Feel Like?
Episode 152 | Kelly’s Story - A daughter with epilepsy (tw: death)
And more here.
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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
Instagram | LinkedIn | Amazon
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“Millie's journey has taken me to the end of myself, but it's been the most beautiful beginning of understanding humanness and how to be compassionate and how to really be kind to other people and take notice that the story that is their life may not be what you see.”
How does trauma affect the whole family, and how can we show compassion to adults with special needs?
One thing I have learned about throughout my career as a child life specialist and have heard from many families on this podcast is the impact that having a child with disabilities and the societal stigma can have on a family.
Today we get to chat with Marna Pacheco, a mother and inventor who understands this impact all too well. She and her husband have two children, one of whom, Millie, has special needs. Marna shares with us the challenges of adopting a child with trauma and special needs, such as the way trauma affects a family, finding therapies, and navigating the medical system.
She shares how parenting a special needs child has both challenged her and shifted her perspective over the years. Marna has continued to empower communities to support individuals with special needs. Being a 24/7 caregiver is not an easy job, Marna describes it as “predictably unpredictable”. Now at almost 18, Millie is transitioning into adulthood which has presented the Pacheco family with a whole new set of challenges.
“It is a huge gap that is missing for the adult special needs community of how the caregivers are being supported in this to help our children navigate the world and thrive. I mean, she should be given every opportunity to thrive as an adult.”Aside from being a committed and resilient parent, Marna is also a businesswoman who created CapeAble Weighted Products made with smart weight technology. Her invention was inspired by Millie after weighted products were recommended by an occupational therapist to help regulate her nervous system and feel safe. After searching through weighted products and trying many out, Marna saw a lack of dignified, fashionable, and practical options.
The resources mentioned in this episode are:
CapeAble Weighted Products,
Diagnosis resources
Robyn Gobbel's podcast Big Baffling Behaviors Books on trauma and brain development by Dr. Bruce Perry, Dr. Stephen Porges, Dr. Dan SiegelAbout 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
Instagram | LinkedIn | Amazon
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“If you have a question, ask it. You are the parent, you need to know” - Jessica Siddi-Sewart
How can medical parents use their experiences to promote action and advocacy?
As a child life specialist, I know that there is not one "normal" or "best" reaction for a parent when their child receives a medical diagnosis.
Today's guest, Jessica Siddi-Sewart and she helps us reflect on the different stages parents go through when facing a medical diagnosis for their child. She is also a mother of three, a paralegal, and a business owner.
I had the pleasure of meeting Jessica during our time at the American Academy of Pediatrics Conference this past October and was instantly drawn to her products and knew I wanted her to join me on the Child Life On Call podcast. Her company Puffaluffs Inc. was inspired by a personal experience with one of her sons. After giving birth at 28 weeks, a NICU stay, and a long and emotional journey to receiving a diagnosis, Jessica still found a way to make meaning and give back.
For Jessica's son, it took 12 years and hundreds of doctor appointments to receive a concrete diagnosis: DiGeorge Syndrome. She shares her journey and learned the importance of finding support and resources from families walking through similar challenges.
“It teaches you to pivot. It teaches you, you know, to learn different things and be okay. It is what it is and you will be okay”
The resources mentioned in this episode are:
Puffaluffs Inc.
Diagnosis resources for families with DiGeorge include:
https://www.nationwidechildrens.org/conditions/22q-deletion-syndrome
https://22q.org/
https://www.maxappeal.org.uk/
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
Instagram | LinkedIn | Amazon
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In this episode about parenting a child with infantile spasms, Katie Taylor, a certified child life specialist, has a profound conversation with Hailey, a resilient mother navigating the complexities of raising a child with a disability. Join us as we delve into Hailey's journey, exploring the challenges and triumphs of parenting under extraordinary circumstances.
"It's not always about thriving in the traditional sense; sometimes it's about finding small victories in our daily struggles and embracing them." - Hailey Adkisson
About the Episode:
This episode offers an intimate glimpse into the life of Hailey, a mother from the Pacific Northwest, and her blended family. Hailey shares her experiences managing her professional life while being a dedicated caregiver to her youngest child, diagnosed with infantile spasms. The discussion also touches on the significance of mindfulness and the power of being present, especially during challenging times.
From the episode with Hailey and Katie, here are three key takeaways:
The Importance of Advocacy and Community: Hailey emphasizes how advocacy and connecting with a community have been vital for her. She discusses the therapeutic aspect of advocating for her child and how it has helped her connect with other families in similar situations.
Challenges and Adaptations in Parenting: The conversation highlights the difficulties of parenting a child with medical complexities. Hailey shares her experiences of managing work-life balance and the adjustments she and her family have had to make to accommodate their child's needs.
Mindfulness and Presence in Caregiving: Both Hailey and Katie touch upon the theme of mindfulness in caregiving. They discuss the challenges of staying present and mindful while dealing with recurring medical crises and the importance of finding ways to disconnect momentarily without losing focus on the child's needs.
"I've learned so much from my daughter. Even though the journey is tough, it has opened my eyes to a different kind of love and strength." - Hailey Adkisson
In our enlightening talk with Hailey, we discover the often-overlooked realities of caregiving and the resilience it fosters. Her parenting journey is a testament to the strength found in adversity and the importance of mindfulness in the face of life's challenges. We hope this episode inspires and provides valuable insights to caregivers and families facing similar journeys.
You can buy Hailey's book, What is Epilepsy?, on Amazon.
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
Instagram | LinkedIn | Amazon
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I'm his mom, and I carried him for almost nine months, and no one loved him more than me. I'm his expert, and I'm going to own that. - Kathryn Whitaker
Have you ever found yourself amazed at the strength people find in the toughest of times?
Well, on today’s podcast, we’re talking about one of the common themes we’ve seen over the past 200 episodes of Child Life On Call and something I consistently see parents share on social media.
We’re talking about the incredible phenomenon of PTG, or post-traumatic growth. We're taking a special look at one of the deeply personal journeys a parent has embarked on during and after their child's medical battles. Together, we'll explore how these intense experiences can unexpectedly sow seeds of strength, knit tighter family connections, and awaken a profound appreciation for every precious moment of life. And guess what? We have a special guest, parent, and passionate advocate, Kathryn Whitaker, who's here to share her inspiring story. So grab your favorite cup of comfort, settle in, and join us as we uncover the resilience and beautiful transformation hidden within the heart of every parent's medical challenge.
Kathryn Whitaker, a proud 6th generation Texan and a mother of six, brings a wealth of personal experience and resilience to the Child Life On Call podcast. With a background in agriculture and marketing, Kathryn's journey as a seasoned NICU parent has inspired her to advocate for families facing similar challenges. Her work with Hand to Hold, a national nonprofit supporting NICU families, showcases her passion for providing strength and support to others dealing with the NICU experience. Through her difficult experiences, Kathryn has found personal growth and hope, offering valuable insights to parents navigating similar paths. Her unique perspective and unwavering resilience make her a compelling voice for anyone seeking strength and inspiration during challenging times.
You are not going to be the same person, thankfully, but hopefully a stronger, better version of the person who walked in the door, as opposed to the person who walks out. - Kathryn Whitaker
The resources mentioned in this episode are:
HandtoHold.org
Check out the NICU Heroes podcast for NICU professionals looking to earn continuing education credits while learning from amazing guests.
Purchase Kathryn Whitaker's book Live Big. Love Bigger. on Amazon or wherever books are sold for an inspiring and transformational read about living an intentional life.
Kathryn on Instagram.
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
Instagram | LinkedIn | Amazon
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In this milestone 200th episode, Katie delves into a unique mix of content, answering insightful questions from Instagram, sharing a personal story about her daughter Cameron's burn accident, and reflecting on the impactful moments of 2023.
The episode features discussions on a variety of books Katie read throughout the year, the best toys of 2023, and tackles the challenging aspects of balancing work and personal life as a child life specialist. Katie's candid sharing of Cameron's experience provides a heartfelt insight into the realities of parenting and healthcare challenges.
Toys that I recommend in this podcast:
Smart Sketch 2.0 by Flywheel
Melissa & Doug Sticker Wow (At Wal-Mart Only)
Katie also shares her thoughts on balancing professional responsibilities with personal life, offering valuable insights for child life specialists and parents alike. Additionally, she discusses her favorite books and toys of 2023, showcasing how these resources can be instrumental in child life practice.
This episode is not just a celebration of reaching a significant milestone but also a testament to the power of shared experiences and the strength of our community. Tune in to hear Katie's heartfelt reflections and valuable advice as we continue our journey together in supporting families through healthcare experiences.
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Join me for an emotional and insightful conversation as I sit down with Kate Kostolansky in this episode of Child Life On Call. Kate, a dedicated mother and advocate, shares her touching journey of raising her daughter, Charlotte, who battles infantile spasms. In this heartfelt discussion, Kate sheds light on the challenges faced by families dealing with rare medical conditions, emphasizing the importance of parental instincts and advocating for timely medical attention. Discover Kate's inspiring efforts to create age-appropriate resources, including a poignant book and a comforting teddy bear, designed to support and educate children navigating epilepsy. This episode offers valuable insights into the world of pediatric epilepsy and the powerful impact of emotional support from peers. Kate's advocacy work and her family's emotional journey will surely resonate with anyone facing similar challenges. Tune in to gain a deeper understanding of navigating pediatric epilepsy and the remarkable strength found in advocacy and support. #InfantileSpasms #PediatricEpilepsy #ChildLife #Advocacy #RareMedicalConditions
In this episode, you will be able to:
Discover insights on parenting a child with infantile spasms.
Learn the importance of seeking timely medical attention.
Explore advocacy strategies for raising infantile spasms awareness.
Find age-appropriate resources for children with epilepsy.
The key moments in this episode are:
00:00:05 - Introduction to Childlife on Call podcast
00:01:24 - Kate's Family and Experience with Infantile Spasms
00:06:03 - Recognizing Infantile Spasms and Seeking Medical Help
00:11:37 - Advocacy for Infantile Spasms Awareness
00:15:54 - Challenges of Treatment and Advocacy
00:18:23 - Understanding the Impact of Epilepsy on Children
00:20:24 - Filling the Gap in Pediatric Epilepsy Resources
00:23:34 - Coping with EEG and Treatment
00:25:21 - Empowering Children through Understanding
00:29:30 - Resources for Children with EpilepsyWays to Connect with Kate
Instagram
Char Bear Keeps Dancing Brave Bear
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