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

Today’s guest expert is Jessica Lewin, a child life specialist in the school setting. We talk about some of the key concepts that she wants parents to know are affecting their middle and high schoolers. Jessica and I discuss suicide, the impact of school attendance, and tweens’ and teens’ psychosocial roles within their social systems.   In this episode, we talk about… [2:09] Jessica’s background and work in the Child Life field [7:10] Psychosocial development in middle and high school [14:09] The mental health crisis for teenagers [18:19] Mental health resources outside of the school setting [22:12] Conversations with teenagers about suicide   CONNECT WITH JESSICA Website 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

Today I’m talking with Megan, who is the mother of three wonderful children. Her first was born with a rare genetic condition called Williams Syndrome. They did not discover this syndrome until he was five months old, and you will hear in her story how those first five months felt like five years. Megan is also a social worker, and she has developed a program that we will talk about at the end of the interview. In this episode, we talk about… [1:53] Megan’s family [3:24] Williams Syndrome [4:30] Megan’s pregnancy and delivery with her son [6:21] Getting a diagnosis of Williams Syndrome [13:45] Feeling lonely after getting the diagnosis of Williams Syndrome [21:24] Family support and coping as parents of a child with special needs [23:36] Living with Williams Syndrome [26:52] How Megan takes care of herself day to day [30:03] An update on Megan’s son and what he has taught her [32:43] Tulip Families: The program Megan developed for families navigating disability and neurodiversity CONNECT WITH MEGAN Website In

Today’s guest expert is my mother, Jane Donovan, who is a child abuse advocate. She is here to provide tangible ways to make this concept less scary and to empower kids and parents. We want to leave you feeling confident about how to teach kids about child abuse. In this episode, we talk about… [3:50] Jane's background and her passion for advocacy [8:48] Using puppets to talk to kids about child abuse [15:04] Good touches versus confusing touches [15:54] Empowering children to tell an adult about abuse [17:31] Respecting personal space [21:08] Feedback about the puppet program [22:35] Reporting child abuse [25:42] Engaging in conversations with kids about child abuse [31:06] A safety sheet to create with your children 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 expe

Today I’m talking with Amy, who discovered her son had a brain tumor after noticing something different about his eye one morning. The brain has a lot of jobs, and it has affected his everyday life in many ways. Amy is an incredible mom, and she shares their story so beautifully. Her ultimate goal is to support other parents going through similar things. In this episode, we talk about… [2:19] Amy’s family [3:59] Finding out about her son’s brain tumor [8:55] Emergency brain surgery  [14:32] Complications after brain surgery [18:34] Researching, asking questions, and advocating while caring for a sick child [22:08] Starting a foundation [25:05] Coping with the emotional toll of caring for a child with a brain tumor [36:00] Intentionally looking for blessings [37:32] The Raymond A. Wood Foundation [44:48] An update on Amy’s son and what he has taught her CONNECT WITH AMY Website Facebook Instagram (Foundation) Instagram (Personal) LinkedIn Have you heard?  The Child Life On Call mobile app for parents, kids and

March is Child Life month, and I wanted to feature some amazing organizations that are doing so much to support children and families in crisis. A few weeks back, I had the opportunity to interview an expert in the field of Child Life about the impact of disasters on children and families (episode 105). Child Life Disaster Relief is an organization that empowers and supports children and families in crisis by integrating Child Life professional services into disaster-impacted communities. Learn more at www.cldisasterrelief.org. Today I’m talking with Sehreen, who has so much wisdom to share. She is doing big things for the world of children’s health, but she is also a mom whose daughter has had some medical challenges. I’m excited for her to share her experiences with you in this episode. In this episode, we talk about… [2:25] Sehreen’s background and family [4:11] Concerns with her daughter missing developmental milestones [9:03] Seeking answers about her daughter’s development [12:48] Advocating for your ch

March is Child Life month, and I wanted to feature some amazing organizations that are doing so much to support children and families in crisis. A few weeks back, I had the opportunity to interview an expert in the field of Child Life about the impact of disasters on children and families (episode 105). Child Life Disaster Relief is an organization that empowers and supports children and families in crisis by integrating Child Life professional services into disaster-impacted communities. Learn more at www.cldisasterrelief.org. Today I’m talking with Paige, who shares her daughter’s experience with Nursemaid’s Elbow. On this podcast, sometimes we talk about really intense diagnoses that last years and have a significant medical impact. Other times we talk about acute issues that are not severe but require medical attention - and today is one of those days. Check out this episode to hear about what Nursemaid’s Elbow is and how to fix it. In this episode, we talk about… [3:05] Paige’s background and family [4:5

Today I am introducing you to Dr. Jin Lee, a licensed clinical psychologist with experience working in hospitals. She now has her own private practice, and she specializes with teens who have functional neurological or post-concussion disorders. You will hear some great information and feedback from Dr. Lee about how to support teens through chronic pain. In this episode, we talk about… [1:54] Dr. Jin Lee’s background [2:51] Working with children and teens with chronic illness [5:57] How Dr. Lee supports her patients [12:04] How patients and their families evolve through working with a clinical psychologist [17:52] Advice for parents of teens with chronic illness Connect with Jin: yourpediatricpsychologist.com docjinlee.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 uniqu

Today we have another story from a heart mama. I wanted to fit them all into February, but I couldn't quite make it. So we are just creeping into March here with Dimitra and her story. Her son also had transposition of the great arteries (TGA), which we heard about in last week’s episode. It’s interesting to see where the two stories are parallel and where they differ.  In this episode, we talk about… [1:51] Dimitra’s family and background [3:37] Adapting to changes outside of our control [5:19] Getting the diagnosis of transposition of the great arteries (TGA) [14:05] Pregnancy after confirming a heart defect [18:59] Dimitra’s son’s birth  [24:01] Coping with setbacks after birth [28:49] Finding out about her son’s coarctation of the aorta [30:52] Dimitra’s son’s surgeries [39:36] Life after two heart surgeries [43:30] What Dimitra’s son has taught her [48:30] How Dimitra processes and copes with her experiences now   Connect with Dimitra: Instagram Website   Have you heard?  The Child Life On Call mobile ap

Here we are in the last week of February, which is heart month, and I am so honored to bring you Melissa’s story. We have discussed other heart defects before, such as tetralogy of fallot and hypoplastic left heart syndrome. This is the first time we are talking about transposition of the great arteries, or TGA. TGA is diagnosed in utero and requires surgery within days. I know Melissa’s story will bring so much value, comfort, and validation to other parents.   In this episode, we talk about… [1:54] Melissa’s background and family [3:29] Getting the diagnosis of of transposition of the great arteries (TGA) [9:26] Melissa’s son’s birth and treatment after birth [15:11] Melissa’s son’s surgery [25:24] Stenosis after surgery [29:15] A second surgery to patch arteries [32:24] Inflammation of the thymus [34:45] Recovery after two surgeries in two weeks [37:15] What helped Melissa through this experience in the hospital [42:00] Going home after five weeks in the hospital [44:50] Update on Melissa’s son   Connect w

Julie May has been a child life specialist for almost 20 years. She is here today to talk with us about how to talk to and support kids who have an adult in their lives who has an illness.  Julie talks about what Wonders and Worries does, and what is accessible for families today. You can get support anywhere in the United States completely for free! You won’t want to miss this episode, because Julie also shares how to read cues based on a child’s development, how to know if you have taken the conversation too far, if it’s time to play, or if they need any other intervention.   Julie is a wealth of knowledge, and I am so glad we get to learn from her.   In this episode, we talk about… [2:02] Julie May’s personal and professional background [4:52] Wonders and Worries: a pioneer program in the child life field [8:42] Advice for parents who want to protect their child from their illness [18:39] Developmental stages and what information children can handle [25:17] Showing emotions in front of children [28:29] Why

Today’s guest, Elizabeth, had never heard of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection) when her son was diagnosed with it. PANDAS is a tough diagnosis, because some doctors believe in it while others do not.  Having a child with this diagnosis that only some doctors believe in is incredibly hard to navigate, to say the least.  PANDAS is an autoimmune disease closely related to infections, so you will hear Elizabeth talk a bit about how her son’s ear infections seemed to lead to PANDAS. Elizabeth also shares her thoughts about how society does not judge kids with colds, cancer, or appendicitis, but society tends to look down on you when your child suffers from neuropsychiatric symptoms.  There are misconceptions that these symptoms are related to bad parenting, violence in the home, poor role models, lack of discipline, or just being a “bad child”.  Parents of children with PANDAS have a lot to carry on their shoulders, and I am so glad Elizabeth is here t

Today’s 12 minute talk became a 20+ minute talk, and Cara Smith and I discussed how parents can connect with their children after a disaster. Cara is an amazing pioneer in the child life field, and she has valuable tips both for child life specialists as well as for parents in the wake of a natural disaster, a pandemic, or any other stressful event. In this episode, we talk about… [1:41] Cara’s background [4:18] Burnout as a child life specialist [6:44] Cara’s experience working with children in the wake of a traumatic event [14:13] Supporting caregivers after a disaster [21:39] Giving children the tools to be resilient [24:29] Learning more about working as a child life specialist in disaster relief Connect with Cara: Website Instagram 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 navi

Today’s guest is Maureen, and she found out at her 20 week ultrasound that her daughter had clubfoot. She shares what families have to endure when confronted with a child with clubfoot. You’ll hear about B and B (boots and bar), serial casting, surgeries, doctors’ visits, and the amount of parent intervention that has to take place in the first four to five years of these kids’ lives.    In this episode, we talk about… [2:07] Maureen’s family and background [4:53] Getting a clubfoot diagnosis in utero [11:39] Processing her daughter’s clubfoot diagnosis [13:28] Medical treatment for clubfoot [17:14] Handling the stress of her daughter’s diagnosis [23:32] The parental workload involved with clubfoot maintenance and treatment [26:34] Maureen’s advice for other parents going through the boots and bar scenario [30:05] Sleep challenges related to clubfoot [31:52] Treatment since the boots and bar [34:35] Maureen’s book: Clubfoot Chronicles [40:27] What Maureen’s daughter has taught her through this experience   Co

For today’s 12 minute talk, I’m speaking with Kat Harrison. At the end of 2021, I shared Kat’s episode (episode 99) in which she talked about what it was like being a teenager with chronic illness.  During that episode, we touched on what helped her the most when she was a teenager in the hospital and how to support adolescents coping with different medical or mental challenges.  I’m so excited to share this talk with you today so you can be more prepared when you’re talking to your own teenager or working in the field with adolescents.   In this episode, we talk about… [2:46] Kat’s background [3:19] How parents can empower their teens living with medical and mental health challenges [5:26] Planning for appointments [8:17] Preventing a diagnosis from becoming an identity [10:02] Mental health [11:41] Asking your teen how they want to be supported [13:04] Kat’s books   Surgery on Sunday Migraine and Mia   Connect with Kat: Website Instagram   Have you heard?  The Child Life On Call mobile app for parents, ki

Today’s guest is Betsy, from an organization called Hope for HIE (Hypoxic Ischemic Encephalopathy). HIE refers to brain injury in an infant, and Betsy will share more specifics about the condition and her family’s experience with it  in our discussion. I originally learned about this organization through working in the NICU here in Texas, and it is a wonderful source of support for parents struggling in completely unknown territory with their babies. In this episode, we talk about… [1:19] HIE: Hypoxic Ischemic Encephalopathy [2:29] Betsy’s family [3:02] The beginning of the HIE journey [11:36] Brain cooling (therapeutic hypothermia) [15:10] Seeing your baby in the NICU [24:06] Warming after therapeutic hypothermia [24:41] MRI day and diagnosing the severity of HIE [30:58] Leaving the NICU [36:01] Moving forward with career and family as parents of a child with HIE [41:20] A current update on Betsy’s son and family Connect with Betsy: Website Instagram Facebook Have you heard?  The Child Life On Call mobile ap

As we kick off the new year, my guest Christiana is sharing the story of her son’s osteosarcoma. Nathaniel has passed away, but his family created Nathaniel’s Childhood Cancer Foundation in his name and legacy. Christiana walks us through his experience with osteosarcoma from the beginning, and she shares details about his battles with childhood cancer. In this episode, we talk about… [1:27] Introducing Christiana and her family [3:09] The beginning of Nathaniel’s story with osteosarcoma [11:49] Nathaniel’s osteosarcoma diagnosis [14:32] How Nathaniel reacted to these sudden life changes [18:52] What was helping Christiana through her son’s cancer battle [21:02] Health insurance and hospitals [23:01] Nathaniel’s experience after amputation [28:06] Finding out that Nathaniel’s cancer had spread [32:13] Getting fitted for a prosthetic and accessing video games post-amputation [35:11] Treatment after radiation [36:19] Nathaniel’s last days [40:28] Nathaniel’s Childhood Cancer Foundation   Connect with Christiana

It’s the 100th episode!  Today I’m opening up a bit and letting you get to know more about me as well as more about what a child life specialist does.  I will be sharing my thoughts about the holiday season, and then I will answer some questions about child life.   In this episode, I talk about… [2:57] The child life perspective on dealing with holiday feelings [7:21] A commonly held belief about my role that I passionately disagree with [8:41] What I wish my younger self knew about being a child life specialist [9:22] What I would buy with ten times my current budget [10:35] Something everybody in my industry should start doing [12:11] The biggest challenge child life is facing today [13:37] How I self-educate [13:56] The topic of a book I would want to write [14:29] Wrapping up the year   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 shar

My guest today, Kat, is sharing her story as a child and now as an adult with chronic illness. I think it’s important for us to change our perspective a bit and hear what the patient has to say. Kat is the community manager at The Mighty, and she has also written two children’s books: Migraine and Mia and Surgery on Sunday. She is such a creative spirit, and she gets really honest with us about what it was like being a teenager in the hospital. She shares what her parents did that worked well, what could have been done differently, and how to support teens with chronic illness. In this episode, we talk about… [1:25] Kat’s background [2:28] The beginning of Kat’s health issues [4:01] What helped Kat when she was in the hospital [5:51] Looking back on Kat’s surgical experiences [7:36] Handling physical differences as a teenager [11:30] The vestibular system and its role in the body [13:02] How Kat’s parents helped her deal with chronic illness as a teenager [16:57] Coping with pain [19:02] Kat’s advice for hers

Happy December!  I’m changing things up a big this week, and sharing my discussion with Meg and Jess from Friends with Fros.  I first interviewed them in June 2020, so please feel free to go back and listen to their anti-racism and diversity episode before enjoying this conversation.  Meg and Jess host a podcast called Don’t Worry ‘Bout My Hair, and they also hold dual certifications as child life specialists along with rec therapy and nursing. In this episode, we talk about… [1:47] Life updates all around [6:19] Hospital experiences during the COVID-19 pandemic [12:24] Working as a child life specialist while pregnant [14:53] Processing difficult experiences [18:02] Cultural considerations for families coming from Afghanistan [24:11] Anti-racism in the child life field [26:35] Changes in care for diverse families   Connect with Meg and Jess: Podcast 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.

My guest today, Samarrah, is sharing her story about her son being diagnosed with a brain tumor. I encourage you to be present as you listen to her story and take the wisdom she is offering. In this episode, we talk about… [1:49] Introducing Samarrah and her family [2:53] Getting the diagnosis of an ependymoma brain tumor [6:19] Processing the brain tumor diagnosis [8:44} Treatment for ependymoma [12:43] The role of parents in a child’s cancer treatment [15:32] Finding support and community [19:13] How Samarrah’s daughter handled the situation [23:21] What helped Samarrah to cope with her son’s  diagnosis and treatment [26:59] What Samarrah’s son has taught her throughout this process [28:06] The importance of a high-quality hospital experience and medical team [29:43] How Samarrah plans to help her son process this experience [31:15] Life post-diagnosis [32:23] Samarrah’s book and the foundation she and her husband created to support ependymoma research   Connect with Samarrah: Instagram Facebook Twitter   H