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“If anybody was to ask me what is one of my biggest strengths, I have to tell them it's resilience… You can throw almost anything at me and I can handle it. I mean, there isn't anything any bigger in this world than losing a child.”-Kathy
In this heartfelt episode, Katie Taylor sits down with Kathy, a mother who shares her journey of raising and caring for her daughter Lauren through multiple medical challenges and eventual passing. Kathy’s story is both heart-wrenching and inspiring. Kathy reflects on the emotional, physical, and logistical challenges of managing long hospital stays, becoming a caregiver to a child with complex medical needs, and balancing self-care amid unimaginable circumstances. Her insights on resilience, self-advocacy, and the deep bond with her daughter provide comfort and inspiration. Kathy’s story is a powerful reminder of the strength it takes to navigate pediatric healthcare, turning pain into purpose, and the lasting impact of a parent's love.
"I was there when that beautiful creature wandered into my life, and I was there when she drifted out." – Kathy
Key Insights:
The Importance of Self-Care: Kathy emphasizes the need to care for oneself to better support a sick child and encourages parents to take breaks from the hospital without guilt.
Parent as Advocate: Transitioning into the role of a medical advocate for her daughter, Kathy highlights how training, learning, and persistence made a difference in Lauren’s care.
Finding Strength in Connection: Kathy discusses the vital role of family, friends, and small acts of kindness in sustaining her during Lauren’s long hospital stays.
Maintaining Normalcy: From packing business-casual clothes to involving Lauren in picking outfits, Kathy underscores the importance of preserving a sense of normalcy amid medical chaos.
Legacy of Resilience: Kathy’s advocacy didn’t end with Lauren’s passing; she continues to support others by sharing her story and working on resources for long hospital stays.
A HUGE thank you to our sponsors:
BeginHealth Prebiotics: Nutrition support for healthy digestion. Use code “ChildLifeOnCall” to get 25 percent off.
30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important.
Begin Health®’s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This makes it convenient for daily use without altering the flavor of your child’s favorite beverages.
25% off selected products: Daily Growing Up Prebiotics 28-Pack, Daily Growing Up Prebiotics Family Size, Double Subscription - Prebiotics, Families On-The-Go, Beginbaby Pre + Pro 28-Pack, Poop Tracker Gamecards and Stickers (6)🥇 Applies to subscription and one-time orders Applies to first 1 subscription orders Limited to one use per customerResources and Tips:
Support Spot App: Tailored guidance for families navigating medical experiences. Learn more
Support Win Win Charity's mission of bringing smiles to children, families, and hospital staff nationwide. Join us to celebrate 12 years of inspiring performances, powerful stories, and magical moments. For a minimum donation of just $12, you can access Win Win Charity's 2024 Telethon fundraiser show in honor of our 12 years of bringing smiles to children in hospitals nationwide! Join the celebration featuring our 2024 "Entertainer of the Year" Tom Pesce, our 2024 "Hospital of the Year" Le Bonheur Children's Hospital, and our first-ever documented patient journey. There are two ways to join the experience on December 2nd! #1 Attend virtually on LeaderPass from anywhere in the world with a virtual pass. #2 Come to our in-person watch party at The Beverly Theater in downtown Las Vegas. We have a special surprise performance at our rooftop reception following the Telethon for those attending in Las Vegas. Simply donate $12 (or more), and we'll see you there! Reserve your spot: https://winwintelethon.com/When parents feel empowered, everyone wins – kids thrive and the care team excels!
Links and Resources:
SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcareLearn more here.
Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.
Instagram.com/childlifeoncall
Facebook.com/childlifeoncall
linkedin.com/in/kfdonovan
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Today's episode is dedicated to the loving memory of Dr. Meredith Hitch, a cherished pediatric gastroenterologist at Ochsner Baton Rouge.
“You want to make sure that you are ready to be able to prepare not only yourself but your kiddo.” - Emily Martinec, CCLS
In this episode host Katie Taylor chats with Emily Martinec, another experienced Child Life Specialist. These two dive into the complexities of preparing children for an upper GI procedure. They provide valuable insights and practical tips for both parents and fellow specialists, sharing lessons learned from their work in pediatric radiology and GI. From scheduling the procedure to supporting children emotionally and physically, Katie and Emily guide listeners through every step of the process for both kids and parents. Whether you're a parent or a professional, this episode is packed with advice to help create an emotionally safe and successful experience for children.
A HUGE thank you to our sponsors:
BeginHealth Prebiotics: Nutrition support for healthy digestion. Use code “ChildLifeOnCall” to get 25 percent off.
30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important.
Begin Health®’s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This makes it convenient for daily use without altering the flavor of your child’s favorite beverages.
25% off selected products: Daily Growing Up Prebiotics 28-Pack, Daily Growing Up Prebiotics Family Size, Double Subscription - Prebiotics, Families On-The-Go, Beginbaby Pre + Pro 28-Pack, Poop Tracker Gamecards and Stickers (6)🥇 Applies to subscription and one-time orders Applies to first 1 subscription orders Limited to one use per customerKey Insights
Preparation is Key: Schedule the procedure around your child’s routine (e.g., feeding and nap times) and advocate for care at a pediatric facility.
Child-Led Support: Tailor explanations based on your child’s age—toddlers need short, concrete steps, while older children benefit from a detailed walkthrough.
Creative Coping Strategies: Bring familiar items like a favorite cup or lovey, and offer simple choices (e.g., flavoring options for the barium).
Parent Emotional Regulation: Stay calm and positive, which helps children feel safe and supported during the procedure.
Teamwork with Staff: Collaborate with radiology staff and child life specialists to create a smooth experience tailored to your child’s needs.
Resources and Tips:
Support Spot App: Step-by-step guidance and visuals for procedures like the upper GI. Download here
Age-Appropriate Preparation Tips: This episode provides strategies tailored to each age group, offering practical and developmentally appropriate tips to help ease anxiety and ensure a smoother experience for both kids and caregivers.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Links and Resources:
SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcareLearn more here.
Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.
Instagram.com/childlifeoncall
Facebook.com/childlifeoncall
linkedin.com/in/kfdonovan
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A huge thank you to our sponsor of today's podcast, Begin Health. - Use code CHILDLIFEONCALL for 25% off
30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important.
Begin Health®’s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This makes it convenient for daily use without altering the flavor of your child’s favorite beverages.
25% off selected products: Daily Growing Up Prebiotics 28-Pack, Daily Growing Up Prebiotics Family Size, Double Subscription - Prebiotics, Families On-The-Go, Beginbaby Pre + Pro 28-Pack, Poop Tracker Gamecards and Stickers (6)🥇 Applies to subscription and one-time orders Applies to first 1 subscription orders Limited to one use per customer"Being both a NICU nurse and a mom transformed how I view and support each child and family I work with."
In this episode host Katie Taylor speaks with a NICU nurse and mother, Brittney, who shares her unique perspective on navigating the healthcare system from both sides; a NICU nurse and NICU mama. Brittany reflects on her journey as a NICU nurse who then became a NICU mom of twins, describing how her experiences inspired her to write a NICU-themed children's book and launch a publishing company. Her story highlights the emotional, mental, and logistical challenges of parenting in a NICU environment and how she uses her experiences to support families facing similar journeys.
Key Insights and Lessons:
Value of Empathy and Shared Experience: Brittney's journey as a NICU mom brought a new level of empathy to her work, allowing her to connect deeply with the parents she now supports.
Empowering NICU Parents: Brittney emphasizes the importance of empowering parents with hands-on involvement, helping them gain confidence in their caregiving roles despite medical complexities.
Advocating for Comfort in the NICU: Encouraging parents to bring personal items, create a nurturing space, and advocate for their emotional needs helps make the NICU environment feel more like home.
Navigating the Unknowns of NICU Life: For Brittney, the hardest part of the NICU experience was the slow, unpredictable progress toward discharge, which she now prepares her patients’ families for, emphasizing resilience and patience.
Resources and Tips:
Find Brittney's resources at Thrift Publication Company. This includes:
Her childrens book “Cradles of Courage: Adventures in the NICU” in both pink and blue
“I am a NICU mom: Coloring Book”
A NICU journal, “The Journal of Our Story: A Medical Notebook for the Organized NICU Parent.” which is designed to help parents track progress and milestones
Brittney's Instagram for updates and NICU-related content: @thriftpubco
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Links and Resources:
SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcareLearn more here.
Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.
Instagram.com/childlifeoncall
Facebook.com/childlifeoncall
linkedin.com/in/kfdonovan
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A huge thank you to our sponsor of today's podcast, Begin Health. - Use code CHILDLIFEONCALL for 25% off
30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important.
Begin Health®’s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This makes it convenient for daily use without altering the flavor of your child’s favorite beverages.
25% off selected products: Daily Growing Up Prebiotics 28-Pack, Daily Growing Up Prebiotics Family Size, Double Subscription - Prebiotics, Families On-The-Go, Beginbaby Pre + Pro 28-Pack, Poop Tracker Gamecards and Stickers (6)🥇 Applies to subscription and one-time orders Applies to first 1 subscription orders Limited to one use per customer"When children are better prepared for a procedure or medical situation, it doesn't eliminate all of the struggles, but it builds a level of trust." - Alessandra
In this week's episode of The Child Life On Call Podcast, host Katie Taylor sits down with Alessandra, the founder of PrepMeKids, to discuss her personal journey navigating her son's rare medical condition, breath-holding spells, from the NICU to childhood. Alessandra shares the emotional toll of advocating for her son in a foreign country, where she had to bridge communication gaps and trust her instincts in a healthcare system very different from the one she knew. Her story highlights the power of preparation and communication with children, especially in medical situations, and how her personal experiences led her to create customizable books to help kids feel empowered and prepared for medical procedures. Through her experience, Alessandra emphasizes the importance of honesty, advocacy, and resilience in medical parenting.
"Parents do know their children, even if they're very young, and we do have gut instincts. It's okay to ask questions and to push back." - Alessandra
Key Insights:
Preparation is crucial for both children and parents when facing medical procedures. Customized books like PrepMeKids help reduce anxiety and build trust.
Advocacy is an essential skill for parents, especially when navigating different healthcare systems. Alessandra emphasizes trusting your gut and asking questions, even when it's uncomfortable.
Honesty with children about what to expect in medical procedures fosters trust and resilience; Alessandra narrates her son’s breath-holding spells to help him understand what’s happening.
Tracking and organizing medical symptoms can help parents notice patterns and advocate for appropriate care. But knowing when to stop tracking is essential for mental well-being.
Emotional overwhelm is common for parents and caregivers. Finding tools and strategies to manage stress, like Alessandra's tips on preparation, is key to long-term resilience.
Resources and Tips Shared in the Episode:
PrepMeKids: Customizable books designed to help children prepare for medical procedures.
Support Spot App: A tool to help parents track symptoms, write down questions, and advocate for their children during medical appointments.
What’s an IV: A children’s book by child life specialist Melissa Fadel and nurse Rosemary Pang, aimed at preparing kids for the IV process in a simple, non-scary way.
@PedsDocTalk on Instagram recently shared a video of a child having a breath-holding spell that went viral. Click here to watch
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Links and Resources:
SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcareLearn more here.
Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.
Instagram.com/childlifeoncall
Facebook.com/childlifeoncall
linkedin.com/in/kfdonovan
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Child Life Specialist Secrets: Flu Shot Prep Strategies Every Parent Should Know
Thank you to the sponsor of today's podcast: Begin Health
In this episode of the Child Life On Call Podcast, hosts Katie Taylor and Emily Martinec, both certified child life specialists, discuss strategies for preparing, supporting, and responding to children during flu shots.
The conversation extends to other medical experiences, offering developmentally appropriate ways to engage children. They emphasize collaboration with medical professionals, highlight coping techniques, and provide resources like the Support Spot app and a digital flu shot preparation course for parents. The focus is on empowering parents and creating a positive healthcare experience for children.
00:00 Introduction to Flu Shot Preparation
01:10 Empowering Parents and Respecting Medical Professionals
03:05 Understanding the Emotional Impact of Shots
04:08 Practical Tips for Flu Shot Day
09:31 Pain Management Techniques
21:07 Post-Shot Processing and Recovery
24:37 Final Thoughts and Encouragement
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Links and Resources:
SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcareLearn more here.
Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.
Instagram.com/childlifeoncall
Facebook.com/childlifeoncall
linkedin.com/in/kfdonovan
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230: Navigating Childhood Cancer: Supporting families through her own experience - Heather's Story
"We’ve joined a club that nobody wants to be a part of, but the good part is we have the best members."
A huge thank you to our sponsor of today's podcast, Begin Health. - Use code CHILDLIFEONCALL for 25% off
30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important.
Begin Health®’s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This makes it convenient for daily use without altering the flavor of your child’s favorite beverages.
25% off selected products: Daily Growing Up Prebiotics 28-Pack, Daily Growing Up Prebiotics Family Size, Double Subscription - Prebiotics, Families On-The-Go, Beginbaby Pre + Pro 28-Pack, Poop Tracker Gamecards and Stickers (6)🥇 Applies to subscription and one-time orders Applies to first 1 subscription orders Limited to one use per customerIn this episode, Katie Taylor interviews Heather, host of the Navigating Childhood Cancer podcast and mother of a teenager diagnosed with leukemia, in honor of Childhood Cancer Awareness Month. They discuss the challenges of receiving a cancer diagnosis for your child, managing cancer treatments, including pill swallowing, and navigating parent guilt. Heather shares her family's journey and how she balanced protecting her son while also being open about her experience to support other families. Through her podcast, Heather provides a space for families to share their stories, giving listeners the strength to cope with childhood cancer.
Key Insights & Lessons Learned:
Pill Swallowing is a Process: Sometimes the goal isn’t mastering a technique but simply finding what works, even if it means grinding pills for an extended period.
The Importance of Listening to the Child: Empowering the child to make decisions about their care, like how they take their medicine, can alleviate unnecessary stress.
Parent Guilt is Real, but Not Always True: Parents often struggle with feeling responsible for their child's illness, but as Heather was reminded, it's not your fault.
Sharing Helps, But Boundaries Matter: Heather highlights the balance of sharing personal experiences while respecting her son's privacy, which is crucial when sharing such a sensitive journey.
Resources and Tips:
Navigating Childhood Cancer Podcast: Hosted by Heather, this podcast shares stories and lessons from families going through childhood cancer. Listen here
Book Recommendation: What’s an IV? by Melissa Fadel and Rosemary Pang – a child-friendly guide of the IV process. Get the book here
Begin Health
To learn more about the sponsor of today's episode, Begin Health, click the link here to get a 25% off coupon!
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Links and Resources:
SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcareLearn more here.
Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.
Instagram.com/childlifeoncall
Facebook.com/childlifeoncall
linkedin.com/in/kfdonovan
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"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 together in a holistic manner, including both physical and psychological treatment methods, was key to finding a comprehensive treatment plan for her son.
Creative Healing: Techniques like art therapy, music therapy, and acupuncture played a significant role in managing her son’s chronic pain and improving his quality of life.
Resilience Leads to Success: Despite the odds, Kim’s son went from a wheelchair to playing in the NFL, showcasing the power of determination, support, and a positive mindset.
Support Networks Matter: Finding others who understand your struggles, whether through social media or hospital communities, can provide invaluable emotional and practical support.
Resources and Tips:
Creative Healing for Youth in Pain (CHYP): Offers free online resources for adolescents and families managing chronic pain. Visit mychipchyp.org for webinars, creative healing workshops, and more.
Mindfulness & Pain Management: Dr. Zeltzer’s pioneering work in pediatric pain management focuses on rewiring the brain through techniques like self-hypnosis and mindfulness.
Sour Candy Tip for Pain Management: A sour candy before a painful shot can help trick the brain into focusing on the sour taste instead of the pain.
Book Reccomendation: What's an IV Start by Melissa Fatal, A Child Life Specialist, and Rosemary Peng, a nurse is a new favorite of ours, walking us through how to prep a child for an IV start.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Links and Resources:
SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcareLearn more here.
Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.
Instagram.com/childlifeoncall
Facebook.com/childlifeoncall
linkedin.com/in/kfdonovan
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"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 how critical early diagnosis was for her daughter Taylor, who started life-saving medication within months of her birth.
Advocacy and Education: Nikki shares how she became an expert in her daughter’s care, highlighting the necessity of parents being active members of the care team.
Equity in Healthcare: Nikki passionately discusses the disparities in newborn screenings for children of color and the need for equity in medical care to prevent delayed diagnoses.
The Power of Community: Finding other parents online and connecting with the Cystic Fibrosis Foundation were vital for Nikki in navigating the challenges of CF.
"Finding other parents online who are going through the same thing has been a lifeline for me." – Nikki DeLeo Resources & Tips:Cystic Fibrosis Foundation: Visit the CF Foundation to find local chapters and resources for parents and caregivers.
Book Recommendation: Breath from Salt - An insightful book about the CF community and the advancements in CF care.
Follow Nikki's Journey: Check out Nikki’s Instagram page, @salt_for_sweet_t, for more on her family’s journey.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Links and Resources:
SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcareLearn more here.
Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.
Instagram.com/childlifeoncall
Facebook.com/childlifeoncall
linkedin.com/in/kfdonovan
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"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 consultations and uncertainty.
The emotional and psychological toll of advocating for a child with a rare disease.
The role of patient advocacy in supporting families and advancing research.
Resources and Tips:GeneDx: Genetic testing and counseling services.
Child Neurology Foundation: Resources for fighting insurance denials and other support.
Women In Bio and Athena: Support network for women in science and biotechnology.
Connect with Gay on LinkedIn.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Links and Resources:
SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcareLearn more here.
Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.
Instagram.com/childlifeoncall
Facebook.com/childlifeoncall
linkedin.com/in/kfdonovan
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"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 significantly reduce long-term psychosocial impacts on children.
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.
Comprehensive Support Systems: Organizations like Feeding Matters offer essential resources, peer coaching, and financial assistance to families facing pediatric feeding disorders.
Understanding Pediatric Feeding Disorders: Awareness and education about feeding disorders are crucial for both parents and healthcare providers to properly support affected children.
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:Feeding Matters: An organization that supports parents of children with pediatric feeding disorders through advocacy, education, support, and research
Peer-to-Peer Support: Connect with other parents through Feeding Matters’ peer coaching program for shared experiences and support.
Financial Assistance: Due to the high costs and low insurance coverage of treating pediatric feeding disorders, Feeding Matters provides financial assistance.
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!
Links and Resources:
SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcareLearn more here.
Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.
Instagram.com/childlifeoncall
Facebook.com/childlifeoncall
linkedin.com/in/kfdonovan
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"I feel like I owe it to him to explore other avenues. Acceptance doesn’t mean giving up; it means continuing to learn and adapt."- Lexi
In this episode of Child Life On Call, Katie Taylor speaks with Lexi, a devoted mother of two, about her family's journey with alopecia universalis. Lexi shares the emotional challenges and triumphs of supporting her three-year-old son, Penn, who was diagnosed with this rare condition. Through sharing her story, Lexi highlights the power of parental instincts, blending Western and Eastern medicine, and advocating for her child's unique needs. Her story offers valuable insights for parents and professionals alike, emphasizing the power of resilience and community in pediatric healthcare.
Key Insights:
Early Diagnosis and Gut Instincts: Lexi's intuition played a crucial role in identifying her son's alopecia early on, showcasing the importance of parental instincts, and advocating for them, in healthcare.
Navigating Emotional Challenges: Lexi discusses the emotional impact of her son's diagnosis and how her husband’s positive outlook has been a source of strength for their family.
Advocacy and Medical Care: The necessity of finding specialized dermatologists and the integration of Western and Eastern medical practices are highlighted as key components of Penn's care.
Coping with Public Reactions: Lexi shares strategies for handling public reactions and educating others about alopecia, aiming to foster empathy and understanding.
Community and Support Systems: The episode underscores the value of support systems, both within the family and from the wider community, in navigating a rare medical condition.
Resources and Tips:
National Alopecia Areata Foundation: Connect with support groups, explore treatment options, and find resources tailored for alopecia families.
https://www.naaf.org/youth-mentor-program/: Support group pairing kids with mentors that Lexi mentioned.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Links and Resources:
SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcareLearn more here.
Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.
Instagram.com/childlifeoncall
Facebook.com/childlifeoncall
linkedin.com/in/kfdonovan
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"My immediate thought was I'm going to lose my son. That was where my head went immediately." - Reina
Introduction
In this episode of Child Life On Call, Katie Taylor talks with Reina, a devoted mother from Nashville, Tennessee. Reina shares her heartfelt journey of caring for her son Elliott, diagnosed with Burkitt lymphoma at eight years old. She discusses the emotional and practical challenges faced during Elliott's treatment, the importance of advocating for her child's needs, and the support systems that played a crucial role in their journey. Reina’s story highlights resilience, the power of community, and the significance of effective communication in pediatric healthcare.
Key Insights:
Early Diagnosis and Challenges: Elliott's diagnosis journey began with a seemingly minor issue, leading to the discovery of a large mass in his tonsil, which was diagnosed as Burkitt lymphoma.
Importance of Advocacy: Reina emphasizes the critical role of parental advocacy, including meticulous record-keeping, clear communication with medical staff, and involving Elliott in his care decisions.
Support Systems: The support from family, the school community, and the involvement of a Child Life Specialist were invaluable in navigating the complexities of treatment and providing emotional and practical help.
Emotional Coping: Reina discusses the emotional toll of her son's illness, the importance of mental health support, and the strategies used to help Elliott cope with the changes and challenges of his treatment.
Creating Resources: Inspired by their experience, Reina has created children's books to help other families navigate similar journeys, emphasizing the importance of involving children in their care and providing accessible resources.
Resources and Tips:
"When a Kid Like Me Fights Cancer" and other resources for helping children understand and cope with cancer.
Read "A Brave Kid's Guide to Lymphoma" and"A Brave Kid's Guide to Leukemia" to help your child cope with a lymphoma or leukima diagnosis.
To learn bout the mission of Hello Brave, founded by Reina, visit their website here.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Get the SupportSpot app! Now available for ALL parents without a hospital code!
SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcareLearn more here.
Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.
Instagram.com/childlifeoncall
Facebook.com/childlifeoncall
linkedin.com/in/kfdonovan
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Episode Description:
In this special impromptu episode, Katie Taylor, Certified Child Life Specialist and CEO of Child Life On Call, shares some exciting news! We're rebranding our beloved Child Life On Call app to SupportSpot.Tune in to hear why we made this change and what it means for you and your family. Plus, get a sneak peek into the new features and benefits you can expect from SupportSpot. This is an announcement you won’t want to miss!
Show Notes:
[00:00] Introduction
Welcome from Katie Taylor Brief overview of the exciting announcement[00:30] Reflecting on the Journey
Katie’s background and passion for child life services The origin of the Child Life On Call podcast and its impact[01:00] The Big Announcement
Introducing the rebrand: Child Life On Call app is now SupportSpot Reasons for the change: Enhanced Clarity: SupportSpot better reflects the app’s purpose and broadens its appeal Broader Appeal: Communicates the app as a comprehensive family support resource during medical experiences[02:00] The Power of Prepared and Empowered Parents
The importance of parents knowing what to expect and how to advocate for their children The impact of child life services beyond children’s hospitals[03:00] The Evolution of Child Life On Call
From podcast to app: How Child Life On Call grew to SupportSpot The incredible journey and feedback from parents and care teams[04:00] Features and Benefits of SupportSpot
Overview of new features and improvements Access to resources, child life tips, procedure guides, therapeutic activities, and more[05:00] How to Get SupportSpot
Available for download on iOS and Android Keeping the price low to ensure accessibility for all families Encouraging parents to spread the word[06:00] Continuing Hospital Partnerships
Ongoing collaboration with hospitals to ensure families have access to the app at no cost The vision for future growth and impact[06:30] Conclusion
Katie’s promise to parents: Empowerment and confidence in healthcare situations Closing remarks and gratitude for the supportLinks and Resources:
SupportSpot Website Download SupportSpot iOS or Android Follow us on Instagram
Don’t forget to subscribe, rate, and review Child Life On Call on your favorite podcast platform. Your support helps us reach more families and provide them with the tools they need for a positive healthcare experience.
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In this episode host Katie Taylor sits down with Ashley O’Neil, a family nurse practitioner and a NICU mom. Ashley shares her journey when her son, Colin, was born at 25 weeks gestation and the following 183 day NICU stay. Listen to hear how she balanced work, advocating for her son’s needs, coping with personal loss, as well as providing invaluable support and resources to other families in similar situations.
"The hardest part isn't being in the NICU; it's the real advocating that starts after discharge." - Ashley O'Neil Key Insights:Early Challenges: Ashley shares the difficulties of having a baby born at 25 weeks and the emotional turmoil of seeing healthy babies at work while her own child struggled in the NICU.
Advocacy: Emphasizing the importance of advocating for her child, Ashley highlights how she meticulously kept records, attended rounds, and communicated her son's needs to the medical staff.
Support Systems: The significance of community support and online groups played a crucial role in her journey.
Resilience: Despite being told what her son might not achieve, Ashley remained steadfast in her belief in his potential, advocating for her son, and celebrating every milestone and victory.
Navigating Systems: The real battle often begins after leaving the NICU, dealing with insurance, medical equipment, and ensuring her child receives the necessary care and resources.
Resources and Tips
Ronald McDonald House: Provides essential housing and support for families with hospitalized children.
Insurance Navigation: Practical advice on dealing with insurance companies and securing
Kids Grief Support: Find information and resources to support grieving children.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Links and Resources:
SupportSpot Website Download SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the SupportSpot App’s comprehensive resources and user-friendly interface. 92% of parent users say the SupportSpotApp helped them understand medical procedures and treatment better. 80% of parents believe the SupportSpot App has contributed to better health outcomes for their child. 73% of parent users believe the SupportSpotApp has made them feel more empowered to advocate for their child in healthcareLearn more here.
Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.
Instagram.com/childlifeoncall
Facebook.com/childlifeoncall
linkedin.com/in/kfdonovan
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On today’s episode, Katie had the privilege of speaking with Annie Gunning, a Certified Child Life Specialist and Grief Counselor, and Haley Thomas, a Licensed Master Social Worker, on their collaborative efforts to support families at Hope for HIE. Annie and Haley tailor their support to each family's unique needs, dedicating time to assess and implement the most effective strategies. Under the visionary leadership of Betsy Pilon, Executive Director of Hope for HIE, Annie and Haley are setting new standards in providing exceptional support to the families they serve.
Key Takeaways
It’s important to meet families where they are.
Finding ways to help prepare children for procedures with items you have at home empowers children and their families.
Supporting the non-patient can be very impactful to families, this includes the siblings and parents.
Loss and Bereavement support is crucial to families. Grief is not linear and the community as a whole can be affected by a loss. Annie and Haley support these families through monthly support groups.
Collaborative support from one another professionally can create strong partnerships with the best interest of the family and child at heart.
When seeking help in a hospital setting, reach out to the person who makes you feel most comfortable. If they cannot provide the specific support you need, they will know who can and will direct you to the right resource.
Learn more about Hope for HIE here.
Parent Stories Matter
If you enjoyed this episode, we encourage you to listen to more CLOC episodes where we highlight the experiences of parents navigating the healthcare system. Each story offers valuable perspectives and practical advice on supporting and empowering families during their healthcare journeys.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Empower Parents & the Care Team with SupportSpot85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface.
92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better.
80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child.
73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare
Learn more here.
Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.
Instagram.com/childlifeoncall
Facebook.com/childlifeoncall
linkedin.com/in/kfdonovan
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Episode Description:
Join Katie Taylor, CCLS in this episode as she talks with Dr. Michael Pitt the founder of Q-Rounds and a compassionate pediatrician (and magician!) dedicated to enhancing doctor-patient communication.
As a child life specialist, Katie understands how crucial it is for families to not only be present during rounds but also to feel empowered and actively engaged in discussing the care plan with their team. When she learned about Q-Rounds, she knew she had to share this innovative approach with her parent and child life community.
Dr. Mike shares his insights on how healthcare professionals can better connect with their patients and the impact of these interactions on the overall healthcare experience. From amusing anecdotes with medical students to practical tips for introducing oneself to patients, Dr. Mike's stories and advice are both enlightening and entertaining.
In This Episode, You'll Discover:
Dr Mike's Focys on Enhancing Doctor-Patient Communication:
Dr. Mike discusses his research on effective communication in healthcare, including a study conducted at the state fair on how patients prefer their doctors to introduce themselves. Q-Rounds Launching in Children's Hospitals Exciting news! Q-Rounds, a virtual queue that sends real-time notifications to patients, families, nurses, and other stakeholders of when to arrive for rounds and gives families the opportunity to join virtually if they can’t be there in person, is now being deployed in children's hospitals, with Dr. Mike at the forefront of this initiative.Parent Stories Matter
If you enjoyed this episode, we encourage you to listen to more CLOC episodes where we highlight the experiences of parents navigating the healthcare system. Each story offers valuable perspectives and practical advice on supporting and empowering families during their healthcare journeys.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Empower Parents & the Care Team with SupportSpot 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcareLearn more here.
Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.
Instagram.com/childlifeoncall
Facebook.com/childlifeoncall
linkedin.com/in/kfdonovan
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“We, we weren't letting those people push us around because, believe it or not, living with us 24 hours a day, we knew more than some of the doctors.” - Skip Vilas
In this heartfelt episode of the Child Life On Call podcast, host and CCLS Katie Taylor interviews Deb Vilas, an expert child life specialist, alongside her parents, Skip and Joyce Vilas. They share their story spanning over 60 years, recounting the challenges and triumphs of raising Deb, who was born with ichthyosis, a rare skin condition. The episode dives deep into the emotional and medical journey of Deb's early years, the evolution of parental advocacy, and the power of family and community support in navigating the complexities of pediatric healthcare.
Takeaways from Skip and Joyce:
The Power of Advocacy: Joyce and Skip's relentless advocacy for Deb's health and well-being, challenging medical professionals when necessary.
Importance of Parental Presence: The emotional and developmental impact of parental presence and touch, even in limited hospital circumstances.
Resilience and Adaptation: Deb's strength and resilience in the face of social challenges and medical hurdles.
Evolution of Pediatric Care: A reflection on how pediatric care has evolved, highlighting the necessity of family-centered approaches.
“The advocacy role is important. And of course, that's one of the roles that Child Life has for children." - Skip Vilas
Resources and Tips:
Foundation for Ichthyosis and Related Skin Types (FIRST): Provides support and resources for families dealing with ichthyosis. Learn more
National Conferences by FIRST: Opportunities for families to connect and share experiences.
Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.
Learn 6 Positions to Help Kids Feel Comfortable and Safe
Here are some of our favorite affiliates that help promote positive coping for kids:
10% off Coping Kits and other select merchandise at Present Over Perfect
Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.
Instagram.com/childlifeoncall
Facebook.com/childlifeoncall
linkedin.com/in/kfdonovan
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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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