217: Navigating IEPs, Infantile Spasms, NICU & STXBP1 - Erin's Story
Release Date: 05/08/2024
235: A Mother’s Journey of Love, Loss, and Resilience- Kathy's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
“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...
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234: Expert Child Life Tips for Supporting Children Through an Upper GI Procedure
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
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...
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233: From NICU Nurse to NICU Mom: Premature Twins born at 33 weeks - Brittney’s Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
A huge thank you to our sponsor of today's podcast, 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...
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232: Preparing and Supporting your child: A son with Breath Holding Spells-Alessandra's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
A huge thank you to our sponsor of today's podcast, 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...
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231: Child Life Specialist Secrets: Flu Shot Prep Strategies Every Parent Should Know
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
Child Life Specialist Secrets: Flu Shot Prep Strategies Every Parent Should Know Thank you to the sponsor of today's podcast: 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...
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230: Navigating Childhood Cancer: Supporting families through her own experience - Heather's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
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, 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...
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229: Trusting your parental Instincts when addressing your child's chronic pain- A son with Juvenile Arthritis- Kim’s Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"Trust your gut. If your parent radar comes up and says this is not right, keep pushing." – Kim In this episode, Katie Taylor speaks with Kim Miller, a mother whose journey navigating her son Grant’s diagnoses of juvenile arthritis reshaped her life. Kim shares how her relentless advocacy led her family through unimaginable challenges, including managing chronic pain and finding the right medical care. Her inspiring story unfolds from the hardships of watching her son struggle to walk, to his incredible transformation into an NFL player. The episode highlights the critical role of...
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228: Early Diagnosis, Advocacy and Equity: A daughter with Cystic Fibrosis- Nikki's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"We are the experts on our daughter and we deserve a say, and we deserve to be given the time to ask questions." – Nikki DeLeo We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website. In this heartfelt episode, host and Certified Child Life Specialist Katie Taylor speaks with Nikki DeLeo, a mother of Taylor, her daughter who has Cystic Fibrosis (CF). Katie and Nikki discuss Nikki’s journey navigating her daughter Taylor's...
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227: Searching for a Diagnosis: A Rare Disease Mom and Advocate's Journey - ADCY5 Gay's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"If you have a doubt about something with your child or a family member, it's just really important to keep pushing through and get to the answers." – Gay Grossman In this episode, host Katie Taylor speaks with Gay Grossman, a passionate patient advocate and mother, about her journey navigating the rare disease world. Gay shares her experience of seeking a diagnosis for her daughter, advocating for genetic testing, and supporting families through complex medical and educational challenges. Her story highlights the importance of persistence, building a support network, and staying organized....
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226. Moms on a Mission: Raising Pediatric Feeding Disorder Awareness with Jaclyn & Athena from Feeding Matters
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"Combining my personal experiences as a mom with my professional role has given me a unique perspective on the challenges families face and the solutions they need." - Jaclyn Pederson In this insightful episode, host Katie Taylor speaks with Jaclyn Pederson, CEO of Feeding Matters and mother, and Athena Flicek, a dedicated mother of a child with feeding difficulties, about the complexities of pediatric feeding disorders. Jaclyn and Athena share their personal and professional experiences, emphasizing the importance of early intervention, advocacy, and comprehensive resources. They...
info_outlineToday’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:
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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.
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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.