Join me for an emotional and insightful conversation as I sit down with Kate Kostolansky in this episode of Child Life On Call. Kate, a dedicated mother and advocate, shares her touching journey of raising her daughter, Charlotte, who battles infantile spasms. In this heartfelt discussion, Kate sheds light on the challenges faced by families dealing with rare medical conditions, emphasizing the importance of parental instincts and advocating for timely medical attention. Discover Kate's inspiring efforts to create age-appropriate resources, including a poignant book and a comforting teddy bear, designed to support and educate children navigating epilepsy. This episode offers valuable insights into the world of pediatric epilepsy and the powerful impact of emotional support from peers. Kate's advocacy work and her family's emotional journey will surely resonate with anyone facing similar challenges. Tune in to gain a deeper understanding of navigating pediatric epilepsy and the remarkable strength found in advocacy and support. #InfantileSpasms #PediatricEpilepsy #ChildLife #Advocacy #RareMedicalConditions

In this episode, you will be able to:

• Discover insights on parenting a child with infantile spasms.

• Learn the importance of seeking timely medical attention.

• Explore advocacy strategies for raising infantile spasms awareness.

• Find age-appropriate resources for children with epilepsy.

The key moments in this episode are:

00:00:05 - Introduction to Childlife on Call podcast

00:01:24 - Kate's Family and Experience with Infantile Spasms

00:06:03 - Recognizing Infantile Spasms and Seeking Medical Help

00:11:37 - Advocacy for Infantile Spasms Awareness

00:15:54 - Challenges of Treatment and Advocacy

00:18:23 - Understanding the Impact of Epilepsy on Children

00:20:24 - Filling the Gap in Pediatric Epilepsy Resources

00:23:34 - Coping with EEG and Treatment

00:25:21 - Empowering Children through Understanding

00:29:30 - Resources for Children with Epilepsy 

Ways to Connect with Kate 

Instagram

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In this episode of Child Life On Call, we are honored to host Jennifer Canvasser, the driving force behind the NEC Society, as she shares her poignant journey and advocacy for Necrotizing Enterocolitis (NEC) awareness in the NICU. Join us as Jennifer unveils her personal story and how she transformed her loss into a powerful force for supporting families grappling with NEC. Gain valuable insights into the pivotal role of human milk and early intervention in mitigating the risk of NEC, and the vital need for open communication between healthcare providers and families in the NICU. Jennifer also sheds light on the indispensable contribution of Child Life specialists and palliative care teams, along with the plethora of resources available on the NEC Society's website. Additionally, Jennifer delves into her touching book, "Forever Our Little One," a heartfelt guide for parents navigating the complexities of grief. Tune in to this impactful episode and be inspired by Jennifer's unwavering commitment to enhancing NEC awareness and providing unwavering support for families in the NICU.

In this episode, you will be able to:

• Discover how NEC Society supports and raises awareness for families.

• Learn the importance of human milk in reducing NEC risk.

• Explore the significance of early intervention and communication in the NICU.

• Understand the vital role of Child Life specialists in the NICU.

• Find valuable resources for families dealing with NEC in the NICU.

More about Jennifer

Jennifer Canvasser is the Executive Director and founder of the NEC Society. With firsthand experience as a mother who lost her son to Necrotizing Enterocolitis (NEC), Jennifer's expertise and advocacy work in the field of NEC is invaluable. Her dedication to raising awareness and driving change is evident through her establishment of the NEC Society, which brings together researchers, scientists, and families affected by NEC. Jennifer's personal journey in the NICU has propelled her to create a platform that fosters collaboration and provides support for families facing the challenges of NEC. Her work aims to empower parents and improve outcomes for premature babies at risk of NEC. We are privileged to have Jennifer as a guest on this episode, as she shares her knowledge and personal insights to shed light on the importance of NEC advocacy.

Connect with Jennifer 

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The key moments in this episode are:
00:00:00 - Introduction

00:04:05 - Jennifer's NICU Experience

00:06:55 - Loss of Micah

00:08:58 - Memories of Micah

00:12:25 - Coping in the NICU

00:15:38 - The Urgency of the NICU Society's Work

00:16:15 - The Importance of Human Milk in NEC Prevention

00:17:41 - Starting Conversations with At-Risk Families

00:18:56 - The Power of Information and Early Intervention

 In this episode, our guest James Robinson will share the keys to living life to its fullest, both inside and outside of the hospital, so that you can provide the result of bringing joy and happiness to your child's life, despite their medical condition. 

James Robinson, the author of the book "More Than We Expected: 5 Years with A Remarkable Son."  On today's episode, he shares his personal experience as a parent of a child with a congenital heart defect.

Living in Brooklyn, New York, James and his wife have three children, one of whom was born with a serious congenital heart defect. They navigated their way through multiple surgeries and hospital stays, learning valuable lessons along the way. James's story highlights the importance of holistic care and the impact of medical professionals, from doctors to Child Life Specialists, in providing support to families. James and his family found strength and created meaningful experiences for their child. 

It was a privilege to be his father. We learned a lot through our journey about what it means to live when you have a medical condition. - James Robinson

In this episode, you will be able to:

• Discover the transformative power of parenthood and how it can bring joy and strength in the face of medical challenges.

• Explore the importance of transparency in navigating the realities of your child's medical condition, and how open communication can benefit both you and your child.

• Learn how child life specialists in hospitals can provide support and create meaningful experiences for your child during their medical journey.

• Find inspiration in stories of resilience and the power of support from other parents who have faced difficult times with their children's medical conditions.

• Discover practical strategies for balancing fear and living a fulfilling life, while still prioritizing your child's health and well-being.

 Connect with James

Learn more about James' book here. 

Link to purchase "More than we Expected"

The key moments in this episode are:

00:00:00 - Introduction

00:00:40 - Purpose of the Podcast

00:02:07 - Story of James' Son

00:05:15 - Balancing Fatherhood and Medical Care

00:07:01 - Trip to Australia and Medical Emergency

00:09:18 - Differences in Medical Practices

00:10:04 - Heart Beads

00:13:11 - The Miracle of the Body Formation

00:14:00 - Trusting the Body's Processes

00:15:47 - Accepting Things Beyond Control

00:16:22 - Challenges of Living in Another Country for Medical Treatment

00:19:26 - The Healing Power of Nature

00:25:34 - The Impact of Therapists

00:26:01 - Exploring the Hospital

00:27:09 - Going Outdoors

00:28:19 - Unexpected Kitchen Visit

00:31:30 - Balancing Fear and Living

00:37:34 - The Purpose of Writing the Book

00:38:01 - The Importance of Child Life

00:38:48 - Parenthood and Self-Discovery

00:40:53 - Availability of the Book

00:42:31 - Conclusion and Resource

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 becoming a wrestling match

• Prepare your child (and yourself) for a shot so they can feel less anxious

• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

In this episode, you will be able to:

• Discover the untold journey of NICU parents, gaining insights and understanding into their unique experiences.

• Uncover the challenges of medically complex pregnancies, and learn strategies for navigating this complex journey with support and resilience.

• Explore the support systems available for medical motherhood, and find out how to build a network of understanding and empowerment.

• Gain invaluable insights and practical tips for navigating the complexities of special needs parenting, empowering you to advocate for your child's unique needs.

• Learn the art of accepting uncertainty in medical diagnoses, finding peace and strength in the face of the unknown.

Hannah Parsons is the guest on this week's episode of Child Life On Call. She shares her personal journey as a mother to a child with Vactrel Association. Hannah has a diverse background, starting out as an actor and comedian before transitioning into editing and stagecraft. Living in Los Angeles with her husband and two-year-old son, Obie, Hannah has faced numerous challenges and complexities throughout her son's medical journey. From navigating a unique pregnancy without insurance to experiencing the unexpected during childbirth, Hannah's story sheds light on the emotional rollercoaster of motherhood and medical motherhood. Her determination, resilience, and unwavering belief in her son's well-being are truly inspiring. Tune in to hear Hannah's incredible journey and gain insights into the realities of special needs parenting.

The key moments in this episode are:
00:00:00 - Introduction

00:02:05 - Pregnancy and Diagnosis

00:06:14 - Birth and Initial Diagnosis

00:10:24 - Navigating the NICU

00:13:48 - Transitioning to Home

00:17:45 - Challenging Medical Conditions

00:19:20 - Unwanted Medical Procedure

00:23:37 - Feeling Unsafe and Disappointed

00:25:02 - Acts of Kindness and Support

00:26:33 - The Impact of NICU Nurses

00:34:54 - Gratitude for a Healthy Child

00:35:45 - Need for Resources and Support

00:36:50 - Navigating Post-Hospital Care

00:37:59 - Importance of Resources and Podcasts

00:45:12 - Diagnosis and Acceptance

Connect with Hannah here. 

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 becoming a wrestling match

• Prepare your child (and yourself) for a shot so they can feel less anxious

• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Join Katie Taylor in an emotional conversation with Mackenzie Carolin as they discuss the unexpected medical journey she faced with her daughter. Learn how Mackenzie navigated the complexities of her child's healthcare needs and discover the importance of trust and human connections during challenging times. This episode of Child Life On Call provides valuable insights and support for parents who find themselves in similar situations. Don't miss this heartwarming and inspiring discussion that highlights the power of advocacy and the strength of a supportive community. Join us now and start watching to gain valuable knowledge and find solace in knowing you're not alone in your journey.

In this episode, you will be able to:

• Discover the power of your personal experiences in transforming your child's healthcare journey.

• Unlock the importance of building human connections to enhance your child's medical care.

• Navigate the complexities of your child's healthcare with confidence and clarity.

• Advocate for your child with disabilities and ensure they receive the support they need.

• Learn how unexpected medical conditions can shape and strengthen your parenting journey.

My special guest is Mackenzie Carolin.

Mackenzie Carolin, a parent from Florida, joins us on this episode of Child Life On Call. Mackenzie shares her personal journey as a mom navigating unexpected medical conditions with her child. With a background in the medical field and surrounded by family members in healthcare professions, Mackenzie brings a unique perspective to the challenges faced by families in similar situations. From the initial shock of discovering her daughter's condition to the emotional rollercoaster of hospital visits and uncertainty, Mackenzie's story highlights the importance of trust, human connections, and advocating for your child's healthcare needs. Join us as Mackenzie shares her experiences and provides valuable insights for parents in similar situations.

The key moments in this episode are:
00:00:05 - Introduction

00:01:13 - The Power of One-on-One Conversations

00:02:47 - Tips for Effective Doctor's Visits

00:03:17 - Introduction to Mackenzie Carolin

00:05:17 - Unexpected News at the Hospital

00:16:05 - Empowerment through Seeking Second Opinions

00:17:05 - Finding Her Voice in Advocating for Her Child

00:19:30 - Becoming an Advocate for Other Moms

00:21:43 - The Power of Mom-to-Mom Support

00:24:06 - Personal Growth and Learning from Liv

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 becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Are you a parent of a child with a medical condition? Join me, Katie Taylor, as I chat with Keeley Machen Schares, a Child Life Specialist, in this special episode of Child Life On Call. Keeley takes us through her incredible journey as a mother to a premature baby with hydrops fetalis and profound hearing loss. From routine ultrasounds to a life-saving diagnosis, Keeley's story will captivate you. Learn about the challenges she faced, the importance of finding the right medical team, and the power of support from fellow parents. Keeley's experience serves as a beacon of hope and inspiration for parents navigating through their own medical journeys. Don't miss out on this heartfelt conversation and join us today.

In this episode, you will be able to:

• Discover how a child life specialist can support you and your child through their medical journey, providing invaluable emotional and practical guidance.

• Understand the complexities of hydrops fetalis and pregnancy complications, and gain valuable insights into managing these challenges during pregnancy.

• Explore the emotional toll of a lengthy NICU stay and discover strategies to navigate the rollercoaster of emotions that come with it.

• Learn about the journey of receiving a hearing loss diagnosis for your child and the positive impact cochlear implants can have on their life.

• Get inspired to become an advocate for your deaf child, empowering them to thrive and ensuring they have access to the resources and support they deserve.

My special guest is Keeley Machen Schares

Keeley Machen Schares is a seasoned Child Life Specialist with over seven years of experience. As a dedicated mom herself, she understands firsthand the challenges and emotions that come with having a child with medical conditions. Keeley's journey took an unexpected turn when her daughter, Dottie, was diagnosed with hydrops fetalis during pregnancy. This life-changing experience led her to navigate the complexities of the healthcare system while also being a supportive advocate for her daughter. Keeley's expertise in child life and her personal experience as a parent of a child with special healthcare needs make her a valuable resource for other parents facing similar situations. She brings a unique perspective and a wealth of knowledge to the discussion, providing insights and support to parents dealing with prematurity, hydrops fetalis, and hearing loss.

The key moments in this episode are:

00:01:08 - Introduction to Keeley

00:03:25 - Finding Out About Dottie's Condition

00:06:55 - The Impact of the 32-Week Ultrasound

00:10:20 - Expressing Gratitude

00:15:32 - The whirlwind of Dottie's birth and NICU stay

00:18:26 - The significance of scent cloths

00:21:13 - Navigating visits and the emptiness of leaving

00:23:50 - Dottie's health progress and gratitude

00:26:13 - Balancing rest and gratitude for visitors

00:31:57 - Additional Testing and Switching Providers

00:34:30 - Cochlear Implants and Hearing Aid Phase

00:39:00 - Advocating for Deaf and Hard of Hearing Kids

00:40:28 - Impact on the Speaker's Life and Perspective

Connect with Keeley here. 

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 becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

This episode is a repost in honor of Spina Bifida awareness month. 

Are you a parent of a child with spina bifida who is seeking support and guidance to navigate the challenges of raising your child? Are you looking for increased understanding, support, and strategies to help you and your child thrive? Join us as we welcome guest Teresa Crespo, who will be sharing the solution to help you achieve that desired outcome. Get ready to gain valuable insights and practical tips that will empower you as a parent and enhance your child's quality of life.

In this episode, you will be able to:

• Gain access to intimate narratives of parents championing the hardships of parenting children with spina bifida.

• Learn the crucial role communication, and representation play in optimizing the welfare of children with spina bifida.

• Immerse yourself in strategies for handling bodily functions in children afflicted with spina bifida.

• Delve into the emotional facets impacting both parents and children and procure invaluable coping methods.

• See the assortment of beneficial products conceived for children with spina bifida and similar medical conditions.

My special guest is Teresa Crespo

Allow us to introduce Teresa Crespo - a mother, a problem solver and an advocate for kids with Spina Bifida. Hailing from Miami, Teresa's 14-year old daughter Isabella was born with this congenital disorder, which led her into a rollercoaster ride through the healthcare system. Also an entrepreneur, Teresa co-created 'Hidden Underwear', a solution for children, like Isabella, who want to blend in with their peers. Teresa's strength, determination, and warm demeanor make her a beacon of hope for other parents.

The key moments in this episode are:
00:00:00 - Introduction to the podcast and Teresa's story

00:05:09 - Discovering something was wrong at birth

00:07:51 - The challenges of waiting for a diagnosis

00:11:02 - Understanding the diagnosis and treatment plan

00:12:30 - The importance of having a comprehensive view of the medical journey

00:14:19 - Understanding Spina Bifida,

00:15:05 - Bella's Prognosis and Challenges,

00:18:23 - Coping with Potty Training Challenges,

00:22:12 - Bella's Multiple Surgeries,

00:25:31 - Bella's Perspective and Coping,

00:29:20 - Validating Feelings and Effective Communication,

00:31:45 - Empowering Kids and Finding Language to Explain Their Condition,

00:34:23 - From Game to Business: The Inspiration Behind Hidden Underwear,

00:37:53 - Expanding Hidden Innovations and Helping More Kids,

00:40:10 - Resilience and Accomplishment in the Face of Challenges,

00:44:05 - Importance of Sharing Experiences,

00:44:38 - Finding Inspiration in Others' Stories,

00:45:37 - Hidden Underwear and Innovations,

00:45:59 - ChildLife On Call Resources

Feel empowered with Child Life On Call's Mastering Immunizations: Expert Tips to Prepare, support and respond like a Child Life Specialist  Course for Parents, Child Life Specialists and Clinicians! 🌈👨‍👩‍👧‍👦💉 

It is the only course you'll ever need to be able to prepare, respond and support your child at any age and stage for immunizations. Evidenced-based tips from a child life specialist who has been supporting kids through painful procedures for 13+ years. This offer will only be available for a limited time. Pre-order your course today here!

We wanted to repost this epsidoe to highlight that October is Learning Disabilities / Dyslexia / Attention Deficit Hyperactivity Disorder Awareness Month. 

In a world of unexpected twists, sometimes the greatest surprises lie within our own children. Child Life Specialist, Shani Thornton's journey with her son's learning differences took an unforeseen turn, unraveling a mystery that went beyond what anyone could have imagined. But what if this unexpected twist held the key to unlocking their hidden potential? Join us as we delve into the story of a mother's unwavering determination, and discover how engaging in activities outside of academics could be the missing piece to building confidence and self-esteem in children with learning differences. Get ready to embark on a journey of empowerment and endless possibilities...

In this episode, you will be able to:

• Immerse in Shani's passionate crusade to ensure her children with learning differences receive the care they need.

• Delve into the complex world of digital education amid a pandemic, and how this interplays with learning differences.

• Grasp the significance and need for early dyslexia diagnosis and intervention, shaping successful learning paths.

• Learn about the strategies to foster confidence in children with learning differences, touching upon areas beyond academics.

• Grasp the role of 'self-care' for those caring for children with learning differences, shedding light on avoiding burnout and delivering effective support.

My special guest is Shani Thornton

Meet Shani Thornton, a seasoned Child Life specialist with nearly 14 years of experience in the field. Living in Northern California, Shani balances being a loving mom of two alongside running her private practice, Child Life Mommy. Typically offering a range of services including hospice care support for children of adult patients, workshops, and grief counseling, Shani's approach is marked by compassion and understanding. Known for her deep understanding of child development, she has a personal connection to this episode's theme: raising confident children with learning differences. Shani has navigated her own children's learning journey and excels in creating an environment that facilitates emotional growth beyond academics.

The key moments in this episode are:
00:01:14 - Introduction,

00:02:28 - Shani's Background,

00:06:04 - Challenges with Remote Learning,

00:07:59 - Individualized Education Plan (IEP),

00:10:26 - Diagnosis and Support,

00:15:42 - Early Interventions and Frustrations,

00:18:00 - Misdiagnosis and Advocacy,

00:19:22 - Individual Educational Evaluation and Interventions,

00:24:27 - Finding Support and Balancing Schoolwork,

00:26:18 - Explaining Learning Differences to the Child,

00:31:39 - The Nature of Dyslexia,

00:32:15 - Normalizing Dysgraphia,

00:33:44 - Supporting Children with Dyslexia in Online Learning,

00:36:03 - Supporting a Child with Dyslexia's Confidence,

00:39:53 - Identifying and Addressing Learning Differences

Connect with Shani here.

Feel empowered with Child Life On Call's Mastering Immunizations: Expert Tips to Prepare, support and respond like a Child Life Specialist  Course for Parents, Child Life Specialists and Clinicians! 🌈👨‍👩‍👧‍👦💉 

It is the only course you'll ever need to be able to prepare, respond and support your child at any age and stage for immunizations. Evidenced-based tips from a child life specialist who has been supporting kids through painful procedures for 13+ years. This offer will only be available for a limited time. Pre-order your course today here!

In honor of October being Breast Cancer Awareness month we wanted to repost this episode to provide awareness to our community. 

Breast cancer survivor, Sara Olsher, battles the disease as a single parent, using her experience to empower others and create resources for families facing cancer, in a moving and inspiring episode of the Child Life On Call podcast.

In this episode, you will be able to:

• Explore Sara's firsthand experiences from her breast cancer diagnosis to treatments, offering an inspiring narrative for those facing a similar situation.

• Learn to simplify complex cancer terminologies into friendly conversation, developing a resourceful way to ease children into understanding the disease.

• Comprehend the value of a strong community in fueling hope and resilience during cancer treatments.

• Master the art of balancing the role of a single parent with the imperative of self-care during cancer treatment.

• Understand the silent toll of cancer on children and strategies to alleviate their anxiety, making them feel safe and heard. List 3:

My special guest is Sara Olsher

Let's meet Sara Olsher, a mother, a steadfast partner, and a formidable cancer warrior. Living in the heart of California's wine country, Sara embodies the phrase 'survivor' in more ways than one. Having traversed the rocky terrain of single parenthood and then battling against a troublesome breast cancer diagnosis, Sara's life journey is nothing short of inspirational. Her frank and sensitive sharing of her personal struggles inspires hope and resilience.

The key moments in this episode are:
00:00:00 - Introduction,

00:03:43 - Sarah's Diagnosis,

00:09:04 - Treatment and Reconstruction,

00:12:57 - Pain and Recovery,

00:15:48 - Sharing the News,

00:18:35 - Explaining Cancer to Her Daughter,

00:23:48 - Providing a Concrete Understanding,

00:25:55 - Seeking Support as a Single Parent,

00:31:30 - Recognizing Acts of Kindness,

00:33:06 - Simple Ways to Help,

00:36:16 - The Importance of Support in Parenting,

00:37:22 - Empathy and Exposure to Different Family Dynamics,

00:38:02 - Sara's Books on Cancer Awareness,

00:43:09 - Creating Calendars for Children with Cancer,

00:45:36 - Donating Calendars to Children's Hospitals

Link to Mighty and Bright

Feel empowered with Child Life On Call's Mastering Immunizations: Expert Tips to Prepare, support and respond like a Child Life Specialist  Course for Parents, Child Life Specialists and Clinicians! 🌈👨‍👩‍👧‍👦💉 

It is the only course you'll ever need to be able to prepare, respond and support your child at any age and stage for immunizations. Evidenced-based tips from a child life specialist who has been supporting kids through painful procedures for 13+ years. This offer will only be available for a limited time. Pre-order your course today here!