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

podcast, Katie interviews Crystal Polk, a Social Worker and Licensed Therapist speaks about the dual role parents of medically complex children hold as caregiver and parent. Crystal specializes in working with families who have children with special or medical needs. She gives parents practical things they can do today to start on the path of healing.  [3:30] Crystal introduces herself [6:00] Identifying the differences between caregiving and parenting [8:30] Acknowledging the stages of grief [9:40] Grieving what you once imagined [11:03] Delegation, being heard and frustration are common themes [14:08] Healing unprocessed trauma using EMDR [16:19] Lean into mindfulness [17:53] Giving your self the the gift of consistency [21:13] Type of support families receive varies from state to state [22:24] Parents are demanding positive changes [25:04] Getting the word out about parent caregiver support Connect with Crystal Website Instagram Crystal recommends using Psychology Today to search for a qualified therapist.

On this week's episode of the podcast, Katie interviews Michele Benyo, a Certified Grief Specialist who helps families navigate the loss of a child with a focus on sibling relationships. Michele experienced the loss of her 6 year old son due to cancer. Michele shares how her daughter still maintained her relationship with her son in the midst of several long hospitalizations and how she processed the loss of her brother. *trigger warning-- this episode talks about loss and grief * [4:15] Michele Introduces herself [5:47] How her career and experience with losing a child collided [7:30] Helping families cope with grief and loss [8:45] How her 3 year old articulated her loss [11:40] Even at 15 months Michele's daughter could tell something was wrong [13:24] Her daughter came with to see her brother frequently [15:15] The visits prepared her for reality [17:59] There is no right way to process grief [21:29] Her daughter was aware of the seriousness of the situation [22:46] The radiation chemo took a toll on his

Travis shares how they discovered his daughter's cystic fibrosis diagnosis at age 4. Just months earlier, Travis learned his half sister was diagnosed with Cystic Fibrosis.  He shares how the journey impacted his life on a professional and personal level creating the foundation, Piper's Angels to help support families dealing with a Cystic Fibrosis diagnosis. [3:50] Introductions [6:43] Showing signs of respiratory issues [8:11] Chest X-Ray to determine the cause of the Cystic Fibrosis [8:37] Adamant state of denial [9:16] The earth-shattering news of the Cystic Fibrosis diagnosis [11:06] Oldest half sister was diagnosed with Cystic Fibrosis months before [13:00] Prescreening for Cystic Fibrosis [14:22] Gene expression can create varied symptoms [15:32] Travis and sister have mild Cystic Fibrosis system [18:25 Learning how to advocate started with becoming apart of the CF community [18:44] Piper became very sick around age 8 [20:36] Roller coaster of having a child with a chronic illness [22:44] Creation of P

On this episode, Savannah shares what it means to have wreck-less hope. Through her traumatic birth, having micro preemie twins and receiving a cerebral palsy diagnosis for one of the twins, Savanah explains how her twins have changed her outlook on life and how she cherishes the little things life has to offer. Savannah opens up about maternal mental health and how it affected her. It is her mission to help other moms experiencing a traumatic brith feel not alone through the gift of artwork and support. [4:05] Introductions [4:55] Stories of hope [6:47] History of pre-term labor [7:29] Going into labor at 24 weeks gestation [8:34] Journaling became therapeutic [11:32]  Finding out both boys had brain bleeds [13:00] Cerebral Palsy and Hydrocephalus diagnosis [14:45] Leaning on each other and family and friends [17:00] The answers to the hard questions [20:00] The shift of worry [22:30] Charm and Wit of Lochlan [25:29] Staying in the present [27:05 The strength within came from [30:30] Cards of hope for mother

On this episode of the podcast, Lenora from BetterSpeech  shares about virtual speech language pathology services and how they can be beneficial for not just the child but for the family. Lenora explains how making a connection with the child positively impacts the progress of speech therapy. This episode is informative of what a virtual session would look like and provides valuable insight to parents seeking out virtual therapy services. [2:50] Lenora introudces herself [3:59] How she got started in Speech Language Pathology [4:32] Integration of therapy into the family setting [5:35] Putting parents at ease [8:03] Parents can share more information [9:22] Providing dedicated time for practicing  speech [10:55] Asking your child how they would like to learn to motivate them [12:31] First experiences with children and connection with a child [14:20] The humor children bring [16:40] There are no stupid questions Connect with Lenora Better Speech Website Better Speech Instagram  Whether you are a parent or prof

This episode is full of tangible truth about what it means to be a caregiver and advocate. Kelly shares about her daughter's epilepsy diagnosis and how it changed her entire world. After a normal pregnancy and delivery, Adelaide wasn't gaining weight and had low muscle tone which was the beginning of her epilepsy diagnosis. Kelly became involved in CURE Epilepsy's mission and shares how Adelaide's spirit lives on through the work she does today.  **Trigger warning: Kelly talks about her daughter's death in this episode** [3:20] Introductions [4:35] Adelaide's diagnosis [5:15] Miguel getting the call [6:00] Moving to Chicago [7:50] A friend's advice [10:35] Learning how to find your voice as a medical parent [14:05] Talking with other parents [16:40] Adelaide's seizures [17:31] Having a plan for seizures gave control over the situation [19:08] Regression after seizures [21:00] Accepting the reality of the situation [22:20] Finding empowerment and advocacy through working with CURE Epilepsy [24:51] CURE Epileps

Cindy and Gavin share about their son Ryan and his battle with Osteosarcoma. Cindy shares about how she created a Case for Smiles to help her cope with Ryan's diagnosis. Gavin brings the perspective of dad and professional and shares how he started a new position at the Hospital his son was being treated at the very same day as a diagnosis. They openly share the ups and downs of their journey and how Ryan's legacy lives on today. [3:16] Introducing their family [5;34] A bike accident lead to the shocking diagnosis [6:26] Going into remission [7:00] Gavin begins a new job as a CFO the same day they got the Osteosarcoma diagnosis [8:30] Diagnosis day [9:30] Bedside Manner of Pediatrician [10:26] Balance between hospital and home [13:32] Being open with Ryan during his treatment [15:38] Ryan learned how to golf during his treatment period [18:03] Cindy shares about how she made a pillowcase for Ryan to make each stay more comfortable [19:50] Finding out Ryan was terminal [21:30] Case of Smiles being formed after

On today's episode, Katie shares with our listeners how Grandparents can support their kids and grandkids during an illness or diagnosis. During the holidays with lots of family time, this topic came to mind. Grandparents are an integral part of the family, whether they live near or far. This episode gives practical ways Grandparents can support their kids and grandkids. [1:58] Hard conversations during the holidays [2:17] How can Grandparents give support [4:05] When your child is hurting. your heart is in a million pieces [4:45] When is it ok to ask questions [5:25] "Can you let me know when a good time is?" [6:32] I love you, I'm here, I want to be useful [7:00] Let them know that you are there without expecting a response [7:58] Write down your questions [8:30] How can Grandparents advocate? [9:26] Sitting down with your child and ask their wants and needs [10:00] Helping with everyday tasks [11:07] Resources for Grandparents [11:32] Online resources to help navigate [12:38] The role of Grandparents is so

On this week's episode, Katie wraps up the year with, Lyndsey  (CLOC admin + podcast editor) sharing about what the common themes across the episodes were in 2022. This year was a memorable one as there were so many parents who so candidly shared their story on the podcast and clinicians who shared their expertise to inspire our listeners. 2022, you were SO good to us! 2023 we look forward to all the amazing stories and insight this next season will bring!  [00:45] Lyndsey Introduces herself [3:34] Listening to stories while in the hospital [4:09] Diversity of topics in 2022 [4:32] Paola's Story {Episode 131} [5:30] Laura's Story {Episode 123 + Episode 124} [6:02] Dear NICU Mama's Story {Episode 145} [6:28] Feeding pump interruption [8:00] Acceptance of being an advocate and expert [8:25]Find your people [9:09] It's ok to use google [11:20] We are grateful for you Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here. Parents, download our free parent st

Katy shares about her daughter Charlotte and how her surgeries that left scars inspired her to write a book about seeing scars in a positive way. Finding out about her daughter's diagnosis at 32 weeks on a Thursday morning and then welcoming Charlotte that Friday evening, talk about a whirlwind!  Katy shares so many truths that will resonate with parents and how Charlotte has changed her life forever. [5:00] Katy introduces herself [6:23] Deciding what to share and not share [8:44] Finding your tribe and shared experiences [10:32] The diagnosis was a complete surprise [11:59] Abnormalities on the ultrasound on a Thursday morning [12:46] Being admitted to the hospital at 32 weeks pregnant [13:31] Emergency C-section on Friday evening [15:51] Getting cliff notes for diagnosis and drew photos to explain [17:02] That numbing feeling of receiving a diagnosis [18:23] Thinking of her husband and how it unfolded for him [21:25] Wedding rings gone missing [24:36] Placing value on people rather than things [26:14] Meet

On today's episode of the podcast we will hear from Kirsten Black, a Certified Child Life Specialist, who had the opportunity to visit children's hospitals in Sweden. Kirsten shares her perspective on the major differences in pediatric healthcare, what she learned along the way and how it has influenced her as a Child Life Specialist. She shares her unconventional yet beautiful journey to the field of Child Life. [4:00] Introducing herself [7:15] Pivoting after the economy crashed [8:30] A seed was planted [10:15] Utilizing her degree in education [12:00] Using a brain map to help a patient with taking a medication [14:00] Connecting with Pediatric Hospice in London [15:15] Going to the Ronald McDonald House in Sweden [18:33] Several connections lead to many different children's hospitals in Sweden [22:27] Legal rights for children in Swedish Hospitals [23:35] The value of children and families in Sweden [25:48] Child Life specialists have an education degree in Sweden [28:41] Advocating for ourselves as Chil

Caryn shares about her daughter Elaina developing ALCAPA, a congenital heart defect, and how they found out weeks after an uneventful pregnancy.  Caryn will shed light on how she coped with Elaina's diagnosis and how she strongly advocated for her along the way. You will feel moved by Caryn's fierce love and commitment to her daughter [2:25] Takeaways on numbing cream from Katie [7:22] Caryn introduces her family [10:16]  Experiencing a wide variety of symptoms [12:56] A visit to the emergency room [15:16] Diagnosis of ALCAPA and emergency surgery [18:40] Caryn was not able to go home to get belongings [19:14] Thoughts about getting a second opinions [20:56] Elaina quit eating after her first surgery [21:58] Advocating for a transfer to a different hospital [23:13] Elaina needed ventilation to recover from her first surgery [23:47] Getting devastating news that Elaina may not pull through a repeat surgery [25:00] She struggled with feeding difficulties [27:29] Honesty and Empathy [29:39] Crash course on the a

On today's episode of the podcast, Ashley + Martha from Dear NICU Mama share their personal stories of trials and joy as they navigated difficult seasons as NICU moms themselves. You will feel right at home with the wit and charm Martha and Ashley bring to this episode. You learn why and how these amazing women created the Dear NICU Mama community all while giving us bits of wisdom, laughter and empowerment along the way. **Trigger Warning**: This episode talks about infant loss. If your heart isn't in the place to listen today, feel free to fast forward through Martha's part of the story.** [3:30] Introducing Dear NICU Mama [3:48] Martha Introduces herself [5:11] Sharing how she became septic and had to have an emergency c-section [6:48] Her son was born at 25 weeks gestation [7:24] Receiving a bleak prognosis [7:58] How JP's life changed the trajectory of Martha's life [8:14] Discovering she had a bicornuate separate uterus [9:00]  JJ was born at 29 weeks gestation [10:09] Struggles with PTSD from the past

As a NICU Dad, Alex Zavala share his perspective and critical role as a father on today's episode of the podcast. Alex shares so many moments along his journey that impacted him and gives advice to fellow NICU dads out there. This episode is for you too moms and partners-- you will learn more about the dad perspective and how to support your spouse. [3:32] Alex shares about his family [7:39] Giving his wife daily injections [9:49] Went to the store to register for baby gifts [10:41] Alex's wife called to let him know her water broke [11:00] The drive to the hospital [14:16] Feeling like you are in the movies [16:00] Finding new found strength as the situation gets harder [17:36] Feeling like you are drinking water from a firehose [18:27] Stat C-Section [19:34] Alone and scrubbing in [23:45] Pleading with the doctor [24:10] Putting faith in the team [26:30] Being in the OR was traumatic for Alex [27:10] Alex's attention turns to his wife as she has post delivery complications [30:25] Dad's are responsible for

On today's episode of the podcast, Emily Lemke shares how to stay organized as a medical parent. Emily's expertise comes from being a medical parent herself and a clinical social worker. She shares about her own journey navigating the world of being a medical parent and the passion behind creating The Medical Mama Compass. You will learn how to manage everything that comes with this title without becoming overwhelmed. [1:52] Introducing her family [2:38] Nora's premature birth and 97 day NICU stay [4:26] Coming home from the NICU with a G-Tube [5:48] Finding a feeding tube solution for Nora [7:15] Feelings surrounding taking your medically complex baby home from the hospital [8:40] Solution focused mindset [11:10] How to help manage the new equipment [12:20] Learning all about health insurance [16:00] The Medical Mama compass uses (A first time discharge MUST have!) [16:37] Document everything, even for insurance. it is a practical way to advocate [17:58] Keep track of your child's progress no matter how smal

Swapnil, father of two, shares on this episode of the podcast about his daughter, Anya, who has severe food allergies.  Swapnil shares about Anya's first symptoms of a food allergy and the event that revealed the severity of her allergies. Whether you are a parent or Clinician, you will gain so much understanding and knowledge about food allergies by listening to Swapnil's story. [2:10] Value of resources along the journey [4:00] Introducing the family [4:56] Eczema struggles at 6 months old [5:30] Anya had a anaphylactic reaction to cashew butter [6:44] Awareness is arising about food allergies [7:46] Preparation for Anya to go to school [9:07] Testing from a local allergist [10:20] Keeping a variety of foods in her diet [11:30] Keeping a spreadsheet to keep track of food and reactions [14:50] How manufacturing changes created an issue [16:00] How mitigating the risk is a form self care [17:23] Sub-lingual Immunotherapy treatment (SLIT) [19:00] Finding a team of allergists for Anya [21:30]  The differences i

Hannah bravely shares how her two young daughters developed febrile seizures. Although febrile seizures are common, it is something that isn't talked about enough. Hannah will shed some light for families walking through this diagnosis and provide you with ways to navigate the practicality and emotions that come along with it. [2:47] Hannah introduces her family [4:45] Sharing symptoms and instincts [6:08] Finding her daughter, Hadley, unresponsive in her crib [8:16] Hand foot and mouth was the initial culprit of the fever [10:52] Discharge instructions after having a febrile seizure [11:43] How prayer and a supportive husband gave Hannah the ability to cope [12:45] Hannah shares about her second daughter, Madison [14:40] Madison has her first febrile seizure [16:39] The after effects of a febrile seizure [19:09] Madison's second seizure [20:58] Hannah shares how the week prior she had a CPR and First Aid refresher course [23:27] Madison showed no symptoms but ended up having a UTI, ear infection and pharyngi

 " It was like I was leaving home with a newborn because I had no idea what to do. We were in survival mode for those 3 days in the hospital. It was just nothing that I ever expected to be dealing with.'-Melanie Smith Melanie shares how she learned of her daughter's diagnosis of type 1 diabetes when her daughter was 18 months old. She so vulnerably shares their journey from diagnosis to life at home. This story is packed full of great insight to families navigating a new diagnosis of type 1 diabetes. [2:50] Melanie introduces her family [5:33 Noticing an excessive thirst in her daughter was the first symptom of diabetes [7:05] Malia's energy levels were depleted [8:55] Melanie made a list of concerns to tell her doctor [11:30] The pediatrician urges them to go the emergency room [13:04] Melanie shares the trauma that incurred for her [15:45] Advocating for Maliah to eat while hospitalized [17:36] Processing the news of her daughter being diabetic [19:17] Learning how to care for Maliah [21:30] Melanie shares

"A patient becomes so vulnerable with them because they don't even realize what they are doing. When you are in that moment petting the dog, every emotion, feeling and thought runs free because you aren't having to focus on a conversation, it is so natural." -Shelby Bonnet, CCLS Shelby Bonnet, a certified Child Life Specialist and Animal Assisted Therapy Coordinator, shares how facility dogs are utilized in children's hospitals. This episode is packed full of information on how facility dogs impact patient care and how to balance patient and clinician needs. If you are a parent who has ever wondered about the purpose of a facility dog in hospitals or a clinician who is wanting to have a facility dog be apart of their hospital's program, you will want to give this episode a listen! [3:00] Shelby shares about her career being a Child Life Specialist and Facility Dog handler [5:00] How they started the Facility Dog Program [6:30] Child Life Specialists role with Facility Dogs [7:12] How her workflow changed [8:2

On todays episode, we will hear from Rita Ho-Bezzola, CEO and Founder of Piper + Enza: A Covid-19 inspired health and happiness company for kids. Rita shares her inspiration behind Piper + Enza and how her goal is to make common health experiences positive for children and parents. You will not want to miss this episode!  [2:30] Sharing about her family [6:14] How Covid-19 was her inspiration create Piper + Enza [8:10] The moment Rita discovers her mission [10:10] Using Literacy to help children cope with medical experiences [14:45] Growing pains of parenting and children [15:00] Changing our perspective on pain [16:56] Our worldview vs our children's worldview [17:50] Empowering parents to be their child's biggest advocate Connect with Rita: Instagram Website Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here. Parents, download our free parent starter kit. When you download our starter kit, you’ll learn how to: Give medicine to your child without it