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

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.com 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.   Website: childlifepodcast.com Merch: bonfire.com/store/childlifeoncall Instagram: instagram.com/childlifeoncall Facebook: facebook.com/childlifeoncall Twitter: twitter.com/childlifeoncall YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

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 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. Website: childlifepodcast.com Merch: bonfire.com/store/childlifeoncall Instagram: instagram.com/childlifeoncall Facebook: facebook.com/childlifeoncall Twitter: twitter.com/childlifeoncall YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

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 quadruplets   Connect with Starlyn: https://www.tiktok.com/@caffsquad https://www.instagram.com/caffsquad YouTube Channel   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. Website: childlifepodcast.com Merch: bonfire.com/store/childlifeoncall Instagram: instagram.com/childlifeoncall Facebook: facebook.com/childlifeoncall Twitter: twitter.com/childlifeoncall YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

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 cell disease [5:24] Lisa’s journey to motherhood [15:24] Finding out that her daughter has sickle cell disease [22:29] Learning more about sickle cell disease [26:19] How Lisa handles her daughter’s pain crises [34:53] Coping with having a child with sickle cell disease [39:07] Lisa’s advice for other parents of children with sickle cell disease [42:51] What Lisa has learned from her daughter [44:31] Lisa’s favorite sickle cell disease resources   Connect with Lisa: https://www.instagram.com/thelisasykes

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 The Puddle Jumper’s Guide to Kicking Cancer Along the way, we’ve been able to share a lot of family stories about dealing with cancer and you can go find all of these and more at childlifepodcast.com, as well as a lot of resources you can print and share for children and caregivers. 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.   Website: https://www.childlifepodcast.com Merch: https://www.bonfire.com/store/childlifeoncall Instagram: https://www.instagram.com/childlifeoncall Facebook: https://www.facebook.com/childlifeoncall Twitter: https://www.twitter.com/childlifeoncall YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

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 American Cancer Society American Childhood Cancer Organization The Child Life department at your closest children’s hospital! Connect with Holly: https://www.instagram.com/hesenn23   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. Website: childlifepodcast.com Merch: bonfire.com/store/childlifeoncall Instagram: instagram.com/childlifeoncall Facebook: facebook.com/childlifeoncall Twitter: twitter.com/childlifeoncall YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

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 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. Website: https://www.childlifepodcast.com Merch: https://www.bonfire.com/store/childlifeoncall Instagram: https://www.instagram.com/childlifeoncall Facebook: https://www.facebook.com/childlifeoncall Twitter: https://www.twitter.com/childlifeoncall YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

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 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.   Website: childlifepodcast.com Merch: bonfire.com/store/childlifeoncall Instagram: instagram.com/childlifeoncall Facebook: facebook.com/childlifeoncall Twitter: twitter.com/childlifeoncall YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

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 challenges. We are so glad you are here. Child Life On Call | Instagram | Facebook | Twitter

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

Katie, Certified Child Life Specialist talks with Cortney Given, Life Coach and Host of the Mindset for Medical Moms Podcast. Cortney could have never guessed that the high school paper she wrote HLHS would be given to her second daughter. Having just moved to Hawaii to start a family adventure, Cortney and her daughter had to relocate back to California for medical care.  In this episode, we talk about: +How living apart from her oldest daughter and husband to seek medical care was challenging and what their reunion was like +Focusing on gratitude helped her state focused and move forward each day +She used her experience and now helps other moms facing similar situations. Follow along with Cortney and and make sure to follow her on Instagram. 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. Katie, Certified Child Life Specialist talks with Lauren Holley, CCLS and Professor discusses the topic: How to Talk to Kids About Death. We talk about: +How to concretely explain death to kids at all stages of development +What emotional responses kids may display after the conversation +Ways to keep the conversation “ongoing” to help kids feel supported 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

Katie, Certified Child Life Specialist talks with Jessica Patay, Founder and Executive Director of We Are Brave Together. Her own story as a mom of a child with special needs began in 2003 when her second son, Ryan, was born and diagnosed with a rare, genetic disorder, called Prader-Willi syndrome. Within two days of receiving this diagnosis, she received a phone call from a mentor mom from the Prader-Willi California Foundation.  Immediately she felt relief and comfort knowing she was NOT ALONE.  In this episode, we talk about: How hearing from medical staff, “I’ve never heard of this before” is NOT helpful What Jessica wished she would have known 18 years ago about where she is today How community has shaped her ability to cope and thrive Learn more about Jessica’s organization and make sure to follow her on Instagram and Facebook.  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

Katie, Certified Child Life Specialist talks with Lauren Holley, CCLS and Professor answers the question and discusses the topic: Should Young Kids Go To Funerals? We talk about: +How to assess whether or not your child is ready to attend the funeral +Concrete language to prepare a young child for a funeral +Ways to support your child during and after the funeral 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

“It was a life or death... that was our life and we rose to the occasion.” Katie, Certified Child Life Specialist talks with Laurie Strongin from Hope for Henry. We talk about: +How parenthood started out with hearing the news no parent wants to hear +How Laurie’s growing family lived out of hotels and Ronald McDonald Homes for years +The impact her first born’s death has had on his siblings +How the first birthday without a “birthday boy” sparked a mission that has reached over 55,000 children in hospitals. 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: How Do I Tell My Kids that I Have Cancer?   Katie, Certified Child Life Specialist gives you tips, language and things to consider when you’re telling children about a cancer diagnosis in the family.   We talk about:   +How to assess your child’s reaction to the news +Concrete language to describe cancer and chemotherapy +Ways to keep the conversation open-ended   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

Katie, Certified Child Life Specialist talks with Sara Olsher, mom, cancer survivor, and owner of Mighty and Bright. Not only does Sara talk with us about getting diagnosed with breast cancer at the age of 34, but she also talks about how she went through it as a single mother navigating life with a six-year-old. We talk about +How she advocated for herself and encourages parents to ask the same things for themselves that they do for their children +How asking for help was non-negotiable and she had to learn to get comfortable with it +How she told her six-year-old that she had cancer and her daughter’s emotional response to having a mother go through chemotherapy and painful surgeries. Learn more about Sara’s calendar and book resources for families going through difficult experiences through Mighty and Bright.