Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist

Katie Taylor, Certified Child Life Specialist

Parents share their journeys and experiences related to having a child with an illness or medical condition. These powerful, and sometimes emotional, stories offer connection in what can typically feel like an isolating world. Visit www.childlifepodcast.com or email info@childlifepodcast.com to share your story. read less
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Episodes

222: A son born at 25 weeks after loss, NICU NP mom and podcaster: Ashley O'Neil
Today
222: A son born at 25 weeks after loss, NICU NP mom and podcaster: Ashley O'Neil
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 WebsiteDownload SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the SupportSpot App’s comprehensive resources and user-friendly interface.92%  of parent users say the SupportSpotApp helped them understand medical procedures and treatment better.80% of parents believe the SupportSpot App has contributed to better health outcomes for their child.73%  of parent users believe the SupportSpotApp has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host:  Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan
221:Collaborative care between a Child Life Specialist and Social Worker with Annie Gunning and Haley Thomas at Hope for HIE
12-06-2024
221:Collaborative care between a Child Life Specialist and Social Worker with Annie Gunning and Haley Thomas at Hope for HIE
On today’s episode, Katie had the privilege of speaking with Annie Gunning, a Certified Child Life Specialist and Grief Counselor, and Haley Thomas, a Licensed Master Social Worker, on their collaborative efforts to support families at Hope for HIE. Annie and Haley tailor their support to each family's unique needs, dedicating time to assess and implement the most effective strategies. Under the visionary leadership of Betsy Pilon, Executive Director of Hope for HIE, Annie and Haley are setting new standards in providing exceptional support to the families they serve.    Key Takeaways   It’s important to meet families where they are.    Finding ways to help prepare children for procedures with items you have at home empowers children and their families.    Supporting the non-patient can be very impactful to families, this includes the siblings and parents.    Loss and Bereavement support is crucial to families. Grief is not linear and the community as a whole can be affected by a loss. Annie and Haley support these families through monthly support groups.    Collaborative support from one another professionally can create strong partnerships with the best interest of the family and child at heart.   When seeking help in a hospital setting, reach out to the person who makes you feel most comfortable. If they cannot provide the specific support you need, they will know who can and will direct you to the right resource.  Learn more about Hope for HIE here.    Parent Stories Matter If you enjoyed this episode, we encourage you to listen to more CLOC episodes where we highlight the experiences of parents navigating the healthcare system. Each story offers valuable perspectives and practical advice on supporting and empowering families during their healthcare journeys. When parents feel empowered, everyone wins – kids thrive and the care team excels! Empower Parents & the Care Team with SupportSpot 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface. 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better. 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child. 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host:  Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan
220: Know EXACTLY When Rounds is Happening with Q-Rounds with Dr. Michael Pitt
29-05-2024
220: Know EXACTLY When Rounds is Happening with Q-Rounds with Dr. Michael Pitt
Episode Description: Join Katie Taylor, CCLS in this episode as she talks with Dr. Michael Pitt the founder of Q-Rounds and a compassionate pediatrician (and magician!) dedicated to enhancing doctor-patient communication.  As a child life specialist, Katie understands how crucial it is for families to not only be present during rounds but also to feel empowered and actively engaged in discussing the care plan with their team. When she learned about Q-Rounds, she knew she had to share this innovative approach with her parent and child life community. Dr. Mike shares his insights on how healthcare professionals can better connect with their patients and the impact of these interactions on the overall healthcare experience. From amusing anecdotes with medical students to practical tips for introducing oneself to patients, Dr.  Mike's stories and advice are both enlightening and entertaining. In This Episode, You'll Discover:   Dr Mike's Focys on Enhancing Doctor-Patient Communication: Dr. Mike discusses his research on effective communication in healthcare, including a study conducted at the state fair on how patients prefer their doctors to introduce themselves. Q-Rounds Launching in Children's Hospitals Exciting news! Q-Rounds, a virtual queue that sends real-time notifications to patients, families, nurses, and other stakeholders of when to arrive for rounds and gives families the opportunity to join virtually if they can’t be there in person, is now being deployed in children's hospitals, with Dr. Mike at the forefront of this initiative. Parent Stories Matter If you enjoyed this episode, we encourage you to listen to more CLOC episodes where we highlight the experiences of parents navigating the healthcare system. Each story offers valuable perspectives and practical advice on supporting and empowering families during their healthcare journeys. When parents feel empowered, everyone wins – kids thrive and the care team excels! Empower Parents & the Care Team with SupportSpot 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface.92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better.80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child.73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host:  Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan
219: 60 Years Later: Reflecting on a Daughter with Ichthyosis
22-05-2024
219: 60 Years Later: Reflecting on a Daughter with Ichthyosis
“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
218: How NOT to Give Families Medical Information - A son with CHARGE syndrome, Taylor's Story
15-05-2024
218: How NOT to Give Families Medical Information - A son with CHARGE syndrome, Taylor's Story
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 Facebook 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 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
217: Navigating IEPs, Infantile Spasms, NICU & STXBP1 - Erin's Story
08-05-2024
217: Navigating IEPs, Infantile Spasms, NICU & STXBP1 - Erin's Story
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
216: How to talk with Kids about Child Abuse - Jane's Story [Repost]
24-04-2024
216: How to talk with Kids about Child Abuse - Jane's Story [Repost]
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 CaregiversKids 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
215: Ruptured Appendix: Emergent Surgery, 6 Days in the Hospital & Struggles to Discharge - Aspen's Story
17-04-2024
215: Ruptured Appendix: Emergent Surgery, 6 Days in the Hospital & Struggles to Discharge - Aspen's Story
"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 Instagram | LinkedIn | Amazon
214: Sacrifice, Advocacy, Joy: Raising a Son with End Stage Kidney Disease - The Ransome Family's Story
10-04-2024
214: Sacrifice, Advocacy, Joy: Raising a Son with End Stage Kidney Disease - The Ransome Family's Story
"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
213: Parents, CCLS, Students: Show Up Exactly As You Are
03-04-2024
213: Parents, CCLS, Students: Show Up Exactly As You Are
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
212: CCLS Story: 18 Years of Supporting Kidney Families -Julie's Story
27-03-2024
212: CCLS Story: 18 Years of Supporting Kidney Families -Julie's Story
"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
211: A Son Born with End-Stage Kidney Disease (Part 1): Lyndsey's Story
20-03-2024
211: A Son Born with End-Stage Kidney Disease (Part 1): Lyndsey's Story
"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
210: Connection, Healing, and Love: Insights from Patrice Karst, Author of The Invisible String
13-03-2024
210: Connection, Healing, and Love: Insights from Patrice Karst, Author of The Invisible String
"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 KarstChild 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
209: Research on Parent Caregivers of Children with Medical Complexities - Elise's Story
06-03-2024
209: Research on Parent Caregivers of Children with Medical Complexities - Elise's Story
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
208: Military Life, Pediatric Complex Care Abroad & Resiliency: Kat's Story
28-02-2024
208: Military Life, Pediatric Complex Care Abroad & Resiliency: Kat's Story
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 Resources Call 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 NowRequest a Child Life On Call Demo: Learn how our app can revolutionize pediatric healthcare experience in your organization. Request a Demo Let'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
Healing Without Surgery: Umbilical Hernia Solutions from a Physical Therapist
21-02-2024
Healing Without Surgery: Umbilical Hernia Solutions from a Physical Therapist
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
206: Founder's Vision: Katie's Journey, Child Life Tech, Future Insights
14-02-2024
206: Founder's Vision: Katie's Journey, Child Life Tech, Future Insights
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
205: How to Support Kids who are Grieving, Bittersweet Relationships & Personal Loss
07-02-2024
205: How to Support Kids who are Grieving, Bittersweet Relationships & Personal Loss
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. _____ 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
204: Caregiver Isolation, Transitioning to Adult Special Needs, and Becoming CapeAble - Marna's Story
31-01-2024
204: Caregiver Isolation, Transitioning to Adult Special Needs, and Becoming CapeAble - Marna's Story
“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 BehaviorsBooks on trauma and brain development by Dr. Bruce Perry, Dr. Stephen Porges, Dr. Dan Siegel 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
203: 12 Years to Diagnosis, Understanding Four Key Emotional Reactions, and Channeling Her Story into Positive Action - Jessica's Story
24-01-2024
203: 12 Years to Diagnosis, Understanding Four Key Emotional Reactions, and Channeling Her Story into Positive Action - Jessica's Story
“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