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

My guest today is Carrie Holt. Carrie is one of those people who, when you talk to her, you feel like you’ve known her your whole life AND it feels like you’re there in the room with her.  She has such a great perspective on having a child with a diagnosis and special needs, and she also hosts a podcast called Take Heart Special Mom.  I’ll be sharing a bit about what I’m grateful for this Thanksgiving week, and then we will jump into Carrie’s story.   In this episode, we talk about… [1:24] What I am grateful for [4:07] About Carrie Holt [5:16] Getting diagnoses of spina bifida and hydrocephalus [8:43] The second half of Carrie’s pregnancy after these issues were discovered [13:37] Bonding with a baby that has to have surgery right after birth [19:30] A trip to the pediatric intensive care unit [25:54] Coming home with a ventilator [27:54] What Carrie wishes she had known at the beginning of this journey [31:39] How Carrie’s other children have grown through this experience [38:31] What Carrie’s son has taught

For today’s 12 minute talk, I’m interviewing author Priscilla Morgan. She gives us exactly what we need to know to start a gratitude journal with kids, without making it a chore.  She teaches us how to find the emotional connection with gratitude to make it meaningful, as well as the power of what gratitude can do now and in the future.   Gratitude Journal for Kids by Priscilla Morgan is available on Amazon and Barnes and Noble.   In this episode, we talk about… [1:00] Priscilla’s background [2:45] Helping children navigate the journey of gratitude journaling [9:18]  Gratitude for future events [9:54] The power of writing [11:23] How Priscilla encourages journaling with her own daughters   Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.   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 strate

Today I get to introduce you to Moira, the host of Surviving the Waiting Room - a podcast based on her experiences from learning how to be an advocate for her teenage children as they started to figure out their health issues. Although they have diagnoses now, there are no exact tests for Celiac Disease or migraines, so Moira has gotten really good at finding people to help give her information.  She has a lot of value to share about getting answers for your kids as well as about relating to teenagers and supporting them as they grow into young adults.   In this episode, we talk about… [1:29] An introduction to Moira and her family [2:43] Getting a diagnosis of Celiac Disease [4:51] Puberty and health problems [5:44] Experiencing migraines [7:41] Finding answers for unexplained medical issues [11:28] Getting a diagnosis of Chronic Fatigue Syndrome [13:14] Invisible illness [16:50] Treatment for Chronic Fatigue Syndrome [19:04] Supporting teenaged and adult children with medical conditions [21:11] Ehlers-Danlo

For today’s 12 minute talk, I’m interviewing Ashley McGaughy.  Ashley is a pediatric occupational therapist from Chicago, and she primarily works as an independent contractor with kids in intervention programs, ages zero to three.  She works on everything from play to daily life skills, and she gets to see kids both in their homes and in private community settings. She has a lot of expertise to offer, and I’m so excited to share it with you.   In this episode, we talk about… [1:09] How Ashley got into occupational therapy and her current work [3:00] Beneficial occupational therapy in the home setting [5:37] Activities that get great engagement and feedback from kids [6:22] Parent engagement in occupational therapy [7:21] Fun and surprising moments as an occupational therapist [8:50] Ashley’s favorite part of being an occupational therapist [9:56] How to follow and learn from Ashley [10:44] Go with your gut when it comes to your child   Ashley McGaughy Pediatric Occupational Therapist instagram.com/ashtheot yo

For today’s 12 minute talk, I’m talking about the COVID-19 vaccine and how to discuss it with kids.  I’m going to give you some ideas, with the caveat that you don’t have to use the exact words I use.  You know your child best. This is also not meant to be an episode that tells you to get your child vaccinated. That is not my area of expertise.  You can discuss that with your child’s doctor and your family.  If you are deciding to get the vaccine, I think it’s important to have a conversation with your child ahead of time.  I want to empower you to have this conversation with your kids, and you could also play this podcast with your kids to jumpstart it.  If you want to skip forward in the episode to my message, I’m going to talk directly to your child.   In this episode, we talk about… [2:24] Having an open and supportive conversation with your child [3:31] Incorporating your own experience into the conversation [4:06] The preparation portion of the conversation [5:52] Empowering your child [7:13] Checking i

Today I’m introducing you to Jenny Hull, a single mom to Josie who just turned 20 years old.  Jenny is also the CEO and founder of a nonprofit organization called Once Upon a Room.  They are changing the game for kids in hospitals, and we’ll get into all the amazing things they do toward the end of our conversation.  Jenny is one of the most comforting and compassionate people I’ve ever had the pleasure of talking with, and her family story is unlike any other - from head-conjoined twins given less than a 1% chance of survival, to adoption, to starting a nonprofit with the help of two incredible teenagers.  I can’t wait to share this story with you!   In this episode, we talk about… [1:12] Meet Jenny Hull [2:40] When Josie and Teresa came into Jenny’s life [5:42] Helping Josie to thrive [8:45] Teresa’s story [11:41] Discussing the twins’ medical issues with Josie over the years [16:31] Staying on top of medical and therapy appointments as a single mother [22:10] The evolution of Once Upon a Room [31:30] The r

For today’s 12 minute talk, I’m interviewing Dr. Brittany Ferri.  She is an occupational therapist, and she has a passion for talking with kids about disabilities.  Brittany talks about her program, Social Fly, a social and motor skills curriculum that educates kids ages 5-12 about disabilities.  This program is great for parents, teachers, child life specialists, and anyone else who is interested in learning how to talk to children about these topics.   In this episode, we talk about… [1:10] Branching out from our professions to broaden our reach [2:19] The Social Fly program [4:29] Key takeaways for parents who want to talk to their children about disabilities [5:39] Integrating occupational therapy into everyday life [7:32] Phrases to use to discuss disabilities with kids who are typically developing [9:15] Having tough conversations with your kids [12:25] How to connect with Dr. Brittany Ferri   Dr. Brittany Ferri Occupational Therapist at Simplicity of Health Creator of Social Fly  www.simplicityofhealth

It’s an incredibly rare experience to sit next to someone else who “gets” what you’re going through… exactly. That’s what support groups are for, right? Well, today you’re getting an inside look into what young adults who have experienced childhood cancer are saying in their support group. These amazing individuals were treated at Hershey Medical Center and now share their support group on a live forum through their Life On Pause podcast. Go listen and share ALL of their episodes. We can learn so much by listening. It’s an honor to be able to share this episode with you on Child Life On Call, but please go check out the Life On Pause podcast and listen to all of their episodes!  This episode was originally published on September 7, 2021: Whether small or large, physical scars often mark the bodies of cancer survivors. In this episode, the Life on Pause crew shares stories of moving through the world with a body and spirit transformed by the experience of cancer.

I connected with one of today’s guests, Brady, through our shared alma mater, Penn State University.  He has dealt with cancer not once, but twice, and he agreed to come on the podcast with his mother, Lisa.  I’m so honored to have both of them on the show to share their experiences, and to continue to spread awareness about this terrible disease during Childhood Cancer Awareness Month. In this episode, we talk about… [2:35] Lisa’s and Brady’s family [3:30] Brady’s cancer diagnosis [9:05] Feeling helpless as a mother [12:03] Brady’s memories surrounding his diagnosis [16:15] Handling cancer treatment as the patient and as the parent [24:50] Brady’s takeaways about himself and his relationship with his mom [29:54] The bond between Brady’s medical caregivers and his family [32:40] Brady’s bone marrow transplant [36:53] How Brady supports other families dealing with childhood cancer [41:59] A few of Brady’s favorite things [44:42] What Lisa’s children have taught her about life Have you heard?  The Child Life On

I’m so excited to have my friend Starlyn on the show today!  She and her husband have struggled with infertility for years, and she is here to share the miraculous story about having one embryo and ending up with four babies.  Today we will hear all about what it’s like to be pregnant with quadruplets, to be separated from them (and her older daughter) in antepartum, and to be unable to visit them in the NICU due to a natural disaster (the Texas snowstorm in March 2021, plus the COVID-19 pandemic). In this episode, we talk about… [3:52] Starlyn’s infertility journey [5:32] Finding out she was pregnant with quadruplets [11:16] Gathering information about fetal reduction [16:28] The antepartum phase during the COVID-19 pandemic [20:48] Preparing big sister to have four siblings [24:24] Mentally preparing for surgery [26:10] Going into labor naturally with quadruplets [28:47] The babies’ births and first days in the NICU [34:07] How to speak to moms without shaming [36:13] What Starlyn has learned since having q

It’s another day in September, which means we are going to be recognizing National Sickle Cell Awareness Month.  Sickle Cell Disease is an inherited blood disorder in which blood cells may become sickle shaped and harden, causing a lot of pain.  On this episode, I am bringing back Lisa’s Story: A Daughter with Sickle Cell Disease.  I want to bring to light sicklecelldisease.org’s theme for 2021, which is Sickle Cell Matters.  This impactful disease can permeate every part of a person’s life, from deciding if they will have children and pass on the trait, to dealing with pain crises, and coping with someone passing away due to sickle cell disease.  These are all things that Lisa had to navigate as she was coming into motherhood, and as you listen to her story, I want you to really understand that sickle cell matters.  It matters to know the facts.  It matters to be aware of what is happening.  It matters to be supportive to families.   In this episode, we talk about… [4:23] Description and prevalence of sickle

September is Childhood Cancer Awareness Month.  Over the last four-and-a-half years, I have had the opportunity and honor to interview many parents who are a part of a club that they didn’t ask to be in.  There is a common bond when you can look at another parent and say you have been through exactly what they are going through. I wanted to go through some of the amazing stories we have been able to share, and give you some of the clips and audio tips that we have gotten from so many families on this podcast. This episode includes clips from… [0:55] Tara Garaghty, founder of Making Cancer Fun  [4:45] Rosaria, sharing her experience of when her son was diagnosed with cancer [5:38] Gillian, sharing her experience with her daughter’s infant leukemia and its long-term effects [10:03] Scott Kramer, who turned his journals from his daughter’s hospitalization with a brain tumor into a book, and started an organization called Dancing While Cancering [15:49] Elizabeth Billups, who wrote a book for her daughter called

When it comes to talking about cancer with kids, there is no one that compares to Holly Senn (Certified Child Life Specialist at Inova L.J. Murphy Children’s Hospital). We’re going to share some tips for parents, teachers, and anyone else who works with children, so that you can approach this serious topic in a really open, kind, and educational way.   In this episode, we talk about… [1:16] Holly’s experience in the Child Life field [3:19] Working with hematology-oncology families [4:30] Engaging in an open and honest  conversation about cancer with a child [7:58] Handling a child’s emotional reaction to the conversation about cancer [9:20] Being open and honest about our emotions, as adults [13:31] Wrapping up a difficult conversation  [15:40] Resources for dealing with childhood cancer Resources: What About Me? When Brothers and Sisters Get Sick by Allen Peterkin The Puddle Jumper’s Guide to Kicking Cancer by Elizabeth Billups (guest on episode 38 of Child Life on Call) Leukemia & Lymphoma Society A

My guest this week is Taraneh, sharing her story about having a son with cleft palate.   In this episode, we talk about… [2:24] Taraneh’s background and her family [3:54] Taraneh’s pregnancy and birth experience with her son [5:23] Cleft palate and Pierre Robin Sequence diagnoses [12:35] Flexibility with feeding a baby with a cleft palate [15:40] Leaving the hospital and transferring care to a clinic [20:44] Taraneh’s son’s surgery [29:28] Surprising or unexpected moments from going through this experience [31:39] How Taraneh’s son is doing now [34:22] Shifting priorities in the face of a child’s medical issues [36:08] What Taraneh wishes she had known before being thrown into the “medical world” [41:09] Piper and Enza: providing resources to support kids and families with medical issues   Piper and Enza: https://www.Piperandenza.com https://www.instagram.com/piperandenza https://www.facebook.com/piperandenza Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be avai

This episode is sponsored by SmileMakers. Use code ONCALL20 for 20% off your order of smile making stickers, toys, patient supplies, and more! This episode is also sponsored by Magic Mind, the World's First Productivity Drink Go here and enter code childlifeoncall20 for 20% off your order This is a quick 12-minute talk addressing how to prepare children for back-to-school.  My son is going into first grade, and during last school year I was able to apply a lot of my Child Life skills to him.  I want to share with you how you can help your child (and yourself!) get ready for the next school year, especially in light of all the unknowns. In this episode, I talk about… [1:43] Start slowly back into your routine [2:52] The importance of preparation [5:00] Focusing on the new positive relationships they will build [6:02] Guiding the conversation toward what works best for your child [8:54] Supporting your child when you aren’t with them [9:31] The follow-up once they get home from school   Have you heard?  The Chi

This episode is sponsored by SmileMakers. Use code ONCALL20 for 20% off your order of smile making stickers, toys, patient supplies, and more!   Meet Bonnie, her husband and her three adult children. Bonnie calls herself "the replacement kid" after her parents lost their son to Type 1 Diabetes. Because of their history, Bonnie was hyper aware of the signs and symptoms and ended up diagnosing her own son at 5 years old with a urine test strip on the bathroom floor of their own home. Have you heard? The Child Life On Call mobile app for parents, kids and their care team will be available in 2022. Sign up to stay informed here. 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 yourself and your family through life’s challenges. We are so glad you are here. Child Life On Call | Instagram | Facebook | Twitter

Answering parent questions in a 12 minute talk.  This episode is sponsored by SmileMakers. Use code ONCALL20 for 20% off your order of smile making stickers, toys, patient supplies, and more! Katie, Certified Child Life Specialist gives specific language to use when talking with your child about an upcoming surgery. +When to bring up the topic before surgery day +Things to do prior to surgery to get prepared +How to address pain, fear and the unknown Have you heard? The Child Life On Call mobile app for parents, kids and their care team will be available in 2022. Sign up to stay informed here. 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 yourself and your family through life’s challenges. We are so glad you are here. Child Life On Call | Instagram | Facebook | Twitter

“For me, it's balancing supporting him in full honor of his disabilities and making sure I am advocating for him AND relating to him as fully capable and strong.” Katie, Certified Child Life Specialist talks with mom of four, life coach and podcast host, Kara Ryska.  Kara’s son was diagnosed with a brain tumor shortly after he turned 18 months old. We talk about what it’s like to hear that piece of information in the waiting room of a hospital and how differently people can react in that moment. Kara attributes her faith and her ability to continue to find “tools” to process her emotions have helped her go throughout this journey. Have you heard? The Child Life On Call mobile app for parents, kids and their care team will be available in 2022. Sign up to stay informed here. 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 yourself and your family through life’s challen

Answering parent questions in a 12 minute talk. Katie, Certified Child Life Specialist talks with Christine Bomberger, Music Therapist at Cleveland Clinic Children's. We talk about: +Why music therapy should be a staple in every children’s hospital +An example of how “Baby Shark” helped a child through a painful dressing change +How you can seek out music therapists in your community Have you heard? The Child Life On Call mobile app for parents, kids and their care team will be available in 2022. Sign up to stay informed here. 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 yourself and your family through life’s challenges. We are so glad you are here. Child Life On Call | Instagram | Facebook | Twitter