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

  Katie, Certified Child Life Specialist interviews Effie Parks, mom to Ford who was born with a rare disease called CTNNB1. Effie is the host of the Once Upon a Gene podcast and in this episode she shares about her journey into parenthood and what it's like raising a child with special needs. She describes how: she learned to advocate for her son's needs self-care is non-negotiable she came to the realization that although parenting is different than she envisioned, her son has taught her more than she could ever imagine. Listen Effie's podcast, Once Upon a Gene, or watch her new show on the Disorder Channel.  Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help  YOU navigate your child’s unique experiences. We give you strategies to support your self and your family through life’s challenges. We are so glad you are here. Child Life On Call | Instagram | Facebook | Twitter

Katie Taylor, Certified Child Life Specialist interviews Dana Burnett, Certified Child Life Specialist for the Bougier City, Louisiana school district.  Dana talks about her child life journey up until this point and how she has transitioned to supporting K-8th grade students through 1:1 interventions. She focuses on serving students with chronic illness, children facing illness and loss, and children with parents who have an illness. Follow along with Dana on Instagram @takingchildlifetoschools. Child Life On Call | Instagram | Facebook | Twitter

Katie, Certified Child Life Specialist talks to Danielle, mom to Della a daughter with Eosinophilic Gastroenteritis. You may know Danielle formally as Danni Starr, the media personality, but she is also momma of two girls, one of which suffers from invisible, chronic illness. Danielle takes us through what the journey to a diagnosis was like (spoiler: it wasn't easy), how their entire family copes with the ups and downs and one surprising revelation: chronic illness isn't all bad. Listen to Danni's own podcast, Help A Human Out, and read her book Empathy and Eyebrows. Child Life On Call | Instagram | Facebook | Twitter

Katie, Certified Child Life Specialist interviews Teresa, a mom of a teenage daughter with Spina Bifida.  With no signs of abnormalities during her pregnancy, Teresa was shocked to learn that a fatty lump on her daughter's skin at the base of her spine would lead to a diagnosis of spina bifida occult with a tethered spinal cord. Teresa walks us through the shock of the diagnosis and the power that a one-on-one discussion with an empathetic doctor had on their ability to cope. Motivated by their story to help kids like her daughter be able to disguise some of the necessary medical equipment she must wear every day, they created www.hiddenunderwear.com Follow along with Teresa on Instagram and Facebook.  Child Life On Call | Instagram | Facebook | Twitter

(This episode was developed in partnership with Aflac. I was compensated for this episode, but all opinions are entirely my own. #ad) In this episode, Katie Taylor, Certified Child Life Specialist talks about the importance of a community for caregivers. She interviews Nichole who shares what her son's experience with cancer has been like. Sara Stewart, Child Life Specialist at Lurie Children's Hospital discusses how she supports children and families during their cancer journey.  Nichole refers to My Special Aflac Duck as a “game changer” for her son during his second fight with cancer. My Special Aflac Duck gives kids with cancer the chance to find joy through play. From feeding and bathing the duck to singing with it and hearing its heartbeat, this interactive companion helps kids find a distraction from their diagnosis. Listen to more stories and find more resources for children, professionals and families at Child Life On Call. This podcast episode is featured in Aflac’s "Do Good" community newsletter,

In another version of "Katie and Jamie's Top 5" these two friends and child life specialists try to lighten the mood by talking about our favorite things of 2020. We can all admit the year was...meh... so why not chat about some of the good parts. Jamie and Katie talk about fun things like their favorite lounge wear, shows to binge, holiday traditions and more game-changing revelations like favorite recipes (spoiler: wine). From Jamie's favorite flavor of NyQuil to "sympathy chores" she had as a "sick child"... we hope to make you laugh, smile, and feel like you're hanging out with your friends.  Listen to other episodes with Jamie here:  Top 5 things about being a Cardiac Kid for Heart Month Liz and Jamie's Story - A daughter with Tetralogy of Fallot and HIV Pediatric Pain with the Meg Foundation Katie Chats with other Child Life Specialists Child Life On Call | Instagram | Facebook | Twitter

In this episode, Annie, Certified Child Life Specialist, talks to Eilieen. She is the amazing mom of a determined, fun loving, 4-year-old hero named Brady. Brady was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (RDEB). While he inspires all who meets him, his favorite thing is just being a typical boy and being treated as such. After a move from Texas to Colorado to find the best care and environment for him, life shifted and their family became advocates in the RDEB community. Eileen is on the board of the EB Research Partnership and they have an absolutely star studded (like for real a ton of A-listers) event coming up on November 18th that will be streamed on Amazon.  EB Research - On November 18th, 2020 at 8pm EST, we will be hosting an extraordinary fundraiser with several A-List celebrities, and streamed on Amazon!!! This is an unparalleled  opportunity for others to learn about Brady's condition, and get us closer and closer to our goal for a cure. Learn more here!!   DEBRA is the organiz

Katie talks to two Certified Child Life Specialists and military spouses, Savannah Self and Lisa McWhorter about ways to support military families. From long waits in military hospitals to helping children navigate the deployment of parents, child life specialists have an important role in helping families cope. A lack of consistency in providers due to moves across the country, and the world, is one of the biggest healthcare challenges military families face. Savannah and Lisa share tips and tools to help families with these unique concerns. Resources for families mentioned in the episode: Fisher House Exceptional Family Member Program (EFMP)   Child Life On Call | Instagram | Facebook | Twitter

Meg, is mom to four children one of whom is living with syndromic craniosynostosis. Her daughter, Avery, who is now six-years-old is proof that children are resilient and capable of so much. She discusses the exhaustion that comes from being the caregiver for a child who requires around the clock care. Meg attributes family (20+ cousins!) constantly surrounding her with love to be one of the biggest parts of their coping. "The first year is so tough, so buckle up. But once it’s over, you’ll be an expert on your child’s care and condition. Everything gets easier with times." Meg says that following other families on social media who have similar conditions can be a great resource for connection and support. To learn more, you can follow @meg_apperson and go to her blog www.fourfinelives.com. Read her book Sky Full of Stars. Child Life On Call | Instagram | Facebook | Twitter    I worried that she might suffer some cognitive delays, but she is an incredibly bright kid! In my experience, when someone looks “d

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Katie, Certified Child Life Specialist, talks with Jamie Gentille, Director of Child Life Services at Inova Children's Hospital and Dr. Jody Thomas, from the Meg Foundation for Pain, in this episode. Dr. Jody Thomas is a licensed clinical psychologist, and specialist in pediatric medical illness and trauma and the founder of the Meg Foundation for Pain. She discusses the mission of their organization which addresses pain in children head-on. Listeners today will walk away with a better understanding about why children shouldn't be in pain if there are ways to reduce it as well as tangible tools the foundation is working on to support parents and children. Jamie adds her own perspective as someone who has spent her life in the medical world, personally and professionally. Jamie's stories show the reality of how the trauma of pain in childhood has effected her to this day. Child Life On Call | Instagram | Facebook | Twitter

Spit up, and even reflux, can be a common problem for infants, but what happens when it's more than that? In this episode, Amrita shares with Katie, Certified Child Life Specialist, about what happens when a child's reflux became severe and leads to a three-week hospitalization, a feeding tube, and ongoing support from developmental therapists.  This is the reality of severe gastroesophogeal reflux disease. Listen to Amrita's story to hear how she has coped with this experience and how her son is now thriving with love and support from his amazing parents. Listen to more stories and get resources to support your children at www.childlifepodcast.com Child Life On Call | Instagram | Facebook | Twitter 

In this episode, Katie interviews Lisa, mom to Riley. Sweet Riley is a spunky and sweet two-year-old living with Sickle Cell Anemia.  Lisa talks about how they knew it would be a possibility while she was pregnant due to the trait being passed down, but they had hoped and prayed to avoid it like they did with their first born, a son who is now nine years old. She says that she can handle the frequent trips to the ER, but watching her daughter in pain is a feeling no mother should have to experience. Lisa attributes prayer, family, and educating herself helps her cope with the realities of her daughter's condition. If you'd like to follow along with Lisa, you can find her on Instagram at @thelisasykes. Child Life On Call | Instagram | Facebook | Twitter

Meet Ashlyn, momma to her sweet and smiley boy, Myles. Myles was born with a rare disease that effects his limbs and other parts of his body. These symptoms are known as VACTERL association.  As a self-proclaimed “planner," Ashlyn talks about the difficulties of having so many unknowns during her pregnancy and how she coped... and is coping... with their journey. She attributes her strong partnership with her husband and prayer as key components to getting through difficult times.  If you'd like to follow along with Ashlyn and Myles, you can follow their Instagram account at @_aboutlaw. Child Life On Call | Instagram | Facebook | Twitter

Meet Maura Senneff, mom to sweet Ryan. Ryan is a thriving 8-year-old boy who has Down syndrome. The amazing advocate by his side, his momma Maura, describes that “zooming out” and looking at things from wide lens helped them turn Ryan’s health around. She talks about small changes and the "no limits" attitude their family lives by. If you'd like to follow along with Maura Senneff and her son, Ryan, you can follow their Instagram @Maurasenneff. Child Life On Call | Instagram | Facebook | Twitter  

Katie talks to Dominique, mom to Mila, who shares her birth story and NICU experience. Born at just 1lb 11ounces at 26 weeks old, Mila has made tremendous progress thanks to proactive parents, therapies and her momma's un conditional love.  Dominique talks about the fear that comes with being an African American pregnant woman in the healthcare setting as well as the impact that sharing her story and community has had on her ability to cope with their journey. You can follow Dominique Pompey through her blog www.dominiquepompey.com on Instagram and YouTube @dominiquepompey.  Child Life On Call | Instagram | Facebook | Twitter

Katie interviews Meg and Jess, two certified child life specialists who also have dual certifications in rec therapy and nursing! These two ladies host a podcast called Don't Worry Bout My Hair and they are your @friendswithfros! We tackle tough questions that are way overdue in the field of child life:  Have you received any feedback or comments from black families regarding challenges due to limited diversity of the hospital staff? What's been the most challenging thing about being a black woman in a predominantly white profession? While I know you do not represent your entire race, like I don't represent mine, do you have any things you'd like white clinical and hospital staff to know, hear, or change? What vital resources and habits would you like to for share children's hospital, specifically, that promote anti-racism and diversity? This episode is also available on the Child Life On Call YouTube channel.  Go listen to Jess and Meg's podcast and follow them on Instagram at @friendswithfros! Child Life

In this episode, Katie, Certified Child Life Specialist, interviews Jessica, mom to two special needs children and one of which who is on the Autism spectrum. Jessica is also an adult clinical neuropsychologist and also hosts a podcast with her husband called, Thriving in the Midst of Chaos. Jessica discusses their journey to get a diagnosis, how they are coping with virtual therapy during covid19, and provides great resources and information about the Autism community. If you'd like to share your story on the Child Life On Call podcast, please send an email to info@childlifepodcast.com Child Life On Call | Instagram | Facebook | Twitter  

Elizabeth, mom to three girls, shares with us her experience of having a daughter with cancer. In just an hour and a half, her 9-year-old daughter went from a pediatricians office to a cancer ward. Elizabeth discusses her Elizabeth's "out of body" experience, how she was able to identify the "gifts" in each of her girls, and offers wisdom and compassion to others going through similar experiences. We also talk about how the global pandemic of Covid19 and subsequent quarantine has impacted their family. Elizabeth is a writer by trade and published a book called The Puddle Jumper's Guide to Kicking Cancer  which is available in both English and Spanish. You can listen to the book on YouTube. To get in touch or follow along with Elizabeth, you can email her at elizabethbillups@gmail.com or see her Instagram @teachingkidsaboutcancer. Child Life On Call | Instagram | Facebook | Twitter  

Katie, Certified Child Life Specialist, talks with Meg Casano, mother to Ella who has Idiopathic Thrombocytopenic Purpura (ITP) and also created the nonprofit Medi Teddy which is a stuffed animal cover for intravenous medications.  Meg talks about the journey to discover her daughter's diagnosis and how an initial prediction that Ella's ITP would only last six months but has turned out to be a life-long chronic illness. She discusses the financial and emotional challenges that exist when you have a child with a chronic illness, but she also talks about how a school project and a driven child can turn into a fully functioning nonprofit that helps other kids like Ella.  Connect with Meg and Ella on Instagram or at www.Medi-Teddy.org Child Life On Call | Instagram | Facebook | Twitter