Advocacy, Compassion, Innovation: Elise's Child Life Journey

"Working with children with medical complexity and developmental differences isn't just a job; it's rooted in who I am." - Elise Cofer, CCLS

Research Article: Fitting the Pieces Together 

Lead Researcher: Elise Cofer

In this captivating episode of Child Life On Call, Katie Taylor sits down with Elise, a Nashville-born child life specialist who brings her passion and dedication to the hematology oncology unit at Vanderbilt. Elise's journey into child life, driven by a background deeply embedded in caring for children with special needs, showcases her commitment to enhancing pediatric healthcare. Through her story, listeners will gain insights into the challenging yet rewarding world of a child life specialist. Elise discusses the evolution of her career, her groundbreaking research on caregiver support, and her vision for a more inclusive and personalized approach to pediatric healthcare.

"Elise's insights remind us of the critical role child life specialists play in not just supporting children, but whole families through their healthcare journeys." - Katie Taylor, CCLS

Key Insights and Lessons:

• The Holistic Approach: Elise's interdisciplinary background highlights the importance of integrating care for children with special needs, emphasizing a holistic approach to their well-being.
• Research as a Pathway for Change: Elise shares her research findings on caregiver experiences, revealing a profound need for targeted child life interventions that support not only the child but the entire family unit.
• Advocacy and Empowerment: Through her work and research, Elise emphasizes the power of advocacy by caregivers and the role of child life specialists in empowering families to navigate the healthcare system effectively.
• The Importance of Listening: One of the most critical skills in child life work, according to Elise, is the ability to listen—to truly hear the needs and wishes of children and their families, thereby tailoring support to each unique situation.

Recommendations:

• For Families: Elise recommends resources that provide guidance on navigating the healthcare system for children with medical complexities, emphasizing the importance of community support and advocacy.
• For Child Life Specialists: Insights into integrating research findings into practice, enhancing the child life specialist's toolkit for supporting families dealing with medical complexities.

🌟 Connect and Share Your Story: Join our community on Instagram @ChildLifeOnCall to share your journey and find support from others navigating similar paths. 

As we continue to explore the depths of pediatric healthcare through stories like Elise's, we are reminded of the resilience, courage, and love that drive individuals to make a significant impact. Stay tuned for more inspiring episodes from Child Life On Call.

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

Learn 6 Positions to Help Kids Feel Comfortable and Safe

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

Meet the host: 

Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.

Instagram.com/childlifeoncall

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

In this profound episode, we join Katie Taylor as she delves into the inspiring journey of a military family navigating pediatric healthcare for their two medically complex children. Through the voice of the remarkable mother, Kat, we explore the unique challenges and triumphs of securing continuous, specialized care amidst the frequent relocations and complexities inherent to military life. Kat shares her experiences with advocacy, the importance of resilience, and the deep bonds forged through their family's journey, offering invaluable insights into the realities faced by military families dealing with medical complexities.

"Every challenge we've faced has only amplified our strength as a family. Our journey is a testament to the power of love, persistence, and advocacy." - Kat

Key Insights and Lessons:

• The critical role of advocacy in navigating pediatric healthcare, especially within the military system.
• Strategies for explaining medical treatments and changes to young children in a way that fosters understanding and cooperation.
• The importance of building a supportive healthcare team that listens and adapts to the unique needs of each family.
• Implementing coping mechanisms for children, like the "Brave Box," to make medical procedures more manageable and less intimidating.
• Recognizing and nurturing the individual strengths and personalities of each child amidst their medical challenges.

Resources and Tips:

• The Sticky Notes Diary: Follow Kat's blog for more insights and support for families of medically complex children in the military. Visit The Sticky Notes Diary. 
• Child Life On Call Resources: Access a variety of resources tailored for parents, professionals, and healthcare providers to navigate pediatric healthcare experiences. Explore Resources

Call to Action:

• Connect on Instagram: Join our vibrant community @ChildLifeOnCall for daily inspiration, stories, and support.
• Explore Our Amazon Storefront: Discover curated resources to support your family's healthcare journey. Shop Now
• Request a Child Life On Call Demo: Learn how our app can revolutionize pediatric healthcare experience in your organization. Request a Demo

Let's continue to support each other and share our stories, fostering a community where no one feels alone in their journey. Tune in next week for another episode filled with hope, courage, and the collective wisdom of our Child Life On Call family.

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

Learn 6 Positions to Help Kids Feel Comfortable and Safe

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

Meet the host: 

Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.

Instagram.com/childlifeoncall

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

What if we could prevent more kids from having to have invasive surgery? During this episode, we are joined by Katie Corrado, who invented a product that works as an alternative to surgery for babies and children. Tune in to hear how her first-hand experience of watching her child struggle with an umbilical hernia led her to an innovative solution that she now offers to other families facing the same challenge. You’ll also learn why Katie is an advocate for proactive rather than reactive medical solutions and how her passion for connecting with kids led her to work as a Physical Therapist rather than a Paediatrician. Join us today to hear all this and more. 

Watch the episode on YouTube

Key Highlights:

• The Penn State Dance-Off Fundraiser and all the connections it facilitates.

• Katie’s journey to becoming a Doctor of Physical Therapy with a Board Certification in Pediatrics.

• The story of an out-of-the-box solution that Katie developed to resolve her son’s umbilical hernia, now known and sold as The Navel Cradle. 

• Differentiating between reactive and proactive medical care and testing non-invasive solutions.

Quotes:

“The resiliency of children is just unmatched and it is amazing to be a part of that.” — Katie Corrado [0:11:50]

“The idea that the best advice to me was to do nothing [about my son’s hernia] was awful. I felt so helpless.” — Katie Corrado [0:24:46]

“Just because there isn’t a treatment for something yet doesn’t mean that there’s never going to be one.” — Katie Corrado [0:27:41]

Resources Mentioned:

Kate Corrado’s LinkedIn: https://www.linkedin.com/in/cathlyn-corrado-pt-dpt-pcs-00305326/

The Navel Cradle:  https://www.navelcradle.com/

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

Learn 6 Positions to Help Kids Feel Comfortable and Safe

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

Meet the host: 

Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.

Instagram.com/childlifeoncall

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

In this episode, we're honored to have Jessica Correnti, a certified child life specialist and a bereaved mother, share her profound insights on grief. Jessica's dual perspective offers a rich understanding of the multifaceted nature of grief beyond the loss of a loved one. She discusses her personal journey, the importance of recognizing and naming grief in children, and how this awareness can empower kids to navigate their emotions.

Key Highlights:

• Jessica's background as a child life specialist and how her personal loss has shaped her professional and personal life.

• The concept of "grief bombs" and the physical manifestations of grief.

• How grief evolves with children as they grow, and the importance of reprocessing their emotions at different stages of development.

• The significance of creating space for children to express and process grief through activities and conversations.

• Jessica's contributions to the field through her books and private practice, aim to enhance grief literacy among children and adults.

Take a look at Katie’s favorite books to help kids grow, thrive and learn!

Resources Mentioned:

• Jessica Correnti's Instagram: @KidsGriefSupport

• Download 38 Activities to Help Grieving Kids Here!

• Website: kidsgriefsupport.com

• ABCs of Grief series by Jessica Correnti.

For anyone looking to deepen their understanding of child grief support and the power of connection through shared experiences, this episode is a must-listen. Join us in exploring the complexities of grief with empathy, knowledge, and hope.

Other recommended episodes on this topic:

Episode 197 | James’ Story - 5 Years with a Remarkable Son (tw: death) 

Episode 173 | Dr. Korie Leigh – What Does Grief Feel Like?

Episode 152 | Kelly’s Story - A daughter with epilepsy (tw: death) 

And more here.

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About Katie Taylor, CCLS and Child Life On Call:

Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform revolutionizing pediatric healthcare by putting parents at the center of the medical journey. With over 13 years of experience as a certified child life specialist, Katie has made significant contributions to the field of child life and the families she’s served with over a decade of working at the bedside. She is an accomplished author, engaging child life and entrepreneurship speaker, and the Child Life On Call Podcast host. Katie's work emphasizes the vital role of child life services in supporting caregivers and enhancing children's medical journeys.

Learn 6 Positions to Help Kids Feel Comfortable and Safe During Procedures

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“Millie's journey has taken me to the end of myself, but it's been the most beautiful beginning of understanding humanness and how to be compassionate and how to really be kind to other people and take notice that the story that is their life may not be what you see.”

How does trauma affect the whole family, and how can we show compassion to adults with special needs?

One thing I have learned about throughout my career as a child life specialist and have heard from many families on this podcast is the impact that having a child with disabilities and the societal stigma can have on a family.

Today we get to chat with Marna Pacheco, a mother and inventor who understands this impact all too well. She and her husband have two children, one of whom, Millie, has special needs.  Marna shares with us the challenges of adopting a child with trauma and special needs, such as the way trauma affects a family, finding therapies, and navigating the medical system. 

She shares how parenting a special needs child has both challenged her and shifted her perspective over the years. Marna has continued to empower communities to support individuals with special needs. Being a 24/7 caregiver is not an easy job, Marna describes it as “predictably unpredictable”. Now at almost 18, Millie is transitioning into adulthood which has presented the Pacheco family with a whole new set of challenges. 

“It is a huge gap that is missing for the adult special needs community of how the caregivers are being supported in this to help our children navigate the world and thrive. I mean, she should be given every opportunity to thrive as an adult.”

Aside from being a committed and resilient parent, Marna is also a businesswoman who created CapeAble Weighted Products made with smart weight technology. Her invention was inspired by Millie after weighted products were recommended by an occupational therapist to help regulate her nervous system and feel safe. After searching through weighted products and trying many out, Marna saw a lack of dignified, fashionable, and practical options. 

The resources mentioned in this episode are:

• CapeAble Weighted Products,

Diagnosis resources 

• Robyn Gobbel's podcast Big Baffling Behaviors
• Books on trauma and brain development by Dr. Bruce Perry, Dr. Stephen Porges, Dr. Dan Siegel

About Katie Taylor, CCLS and Child Life On Call:

Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform revolutionizing pediatric healthcare by putting parents at the center of the medical journey. With over 13 years of experience as a certified child life specialist, Katie has made significant contributions to the field of child life and the families she’s served with over a decade of working at the bedside. She is an accomplished author, engaging child life and entrepreneurship speaker, and the Child Life On Call Podcast host. Katie's work emphasizes the vital role of child life services in supporting caregivers and enhancing children's medical journeys.

Learn 6 Positions to Help Kids Feel Comfortable and Safe During Procedures

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“If you have a question, ask it. You are the parent, you need to know” -  Jessica Siddi-Sewart 

How can medical parents use their experiences to promote action and advocacy?

As a child life specialist, I know that there is not one "normal" or "best" reaction for a parent when their child receives a medical diagnosis.

Today's guest, Jessica Siddi-Sewart and she helps us reflect on the different stages parents go through when facing a medical diagnosis for their child. She is also a mother of three, a paralegal, and a business owner.

I had the pleasure of meeting Jessica during our time at the American Academy of Pediatrics Conference this past October and was instantly drawn to her products and knew I wanted her to join me on the Child Life On Call podcast. Her company Puffaluffs Inc. was inspired by a personal experience with one of her sons.  After giving birth at 28 weeks, a NICU stay, and a long and emotional journey to receiving a diagnosis, Jessica still found a way to make meaning and give back.

For Jessica's son, it took 12 years and hundreds of doctor appointments to receive a concrete diagnosis: DiGeorge Syndrome. She shares her journey and learned the importance of finding support and resources from families walking through similar challenges. 

“It teaches you to pivot. It teaches you, you know, to learn different things and be okay. It is what it is and you will be okay”

The resources mentioned in this episode are:

• Puffaluffs Inc.

Diagnosis resources for families with DiGeorge include:

• https://www.nationwidechildrens.org/conditions/22q-deletion-syndrome

• https://22q.org/

• https://www.maxappeal.org.uk/

About Katie Taylor, CCLS and Child Life On Call:

Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform revolutionizing pediatric healthcare by putting parents at the center of the medical journey. With over 13 years of experience as a certified child life specialist, Katie has made significant contributions to the field of child life and the families she’s served with over a decade of working at the bedside. She is an accomplished author, engaging child life and entrepreneurship speaker, and the Child Life On Call Podcast host. Katie's work emphasizes the vital role of child life services in supporting caregivers and enhancing children's medical journeys.

Learn 6 Positions to Help Kids Feel Comfortable and Safe During Procedures

Instagram | LinkedIn | Amazon 

In this episode about parenting a child with infantile spasms, Katie Taylor, a certified child life specialist, has a profound conversation with Hailey, a resilient mother navigating the complexities of raising a child with a disability. Join us as we delve into Hailey's journey, exploring the challenges and triumphs of parenting under extraordinary circumstances.

"It's not always about thriving in the traditional sense; sometimes it's about finding small victories in our daily struggles and embracing them." - Hailey Adkisson

About the Episode:

This episode offers an intimate glimpse into the life of Hailey, a mother from the Pacific Northwest, and her blended family. Hailey shares her experiences managing her professional life while being a dedicated caregiver to her youngest child, diagnosed with infantile spasms. The discussion also touches on the significance of mindfulness and the power of being present, especially during challenging times.

From the episode with Hailey and Katie, here are three key takeaways:

• The Importance of Advocacy and Community: Hailey emphasizes how advocacy and connecting with a community have been vital for her. She discusses the therapeutic aspect of advocating for her child and how it has helped her connect with other families in similar situations.

• Challenges and Adaptations in Parenting: The conversation highlights the difficulties of parenting a child with medical complexities. Hailey shares her experiences of managing work-life balance and the adjustments she and her family have had to make to accommodate their child's needs.

• Mindfulness and Presence in Caregiving: Both Hailey and Katie touch upon the theme of mindfulness in caregiving. They discuss the challenges of staying present and mindful while dealing with recurring medical crises and the importance of finding ways to disconnect momentarily without losing focus on the child's needs.

"I've learned so much from my daughter. Even though the journey is tough, it has opened my eyes to a different kind of love and strength." - Hailey Adkisson

In our enlightening talk with Hailey, we discover the often-overlooked realities of caregiving and the resilience it fosters. Her parenting journey is a testament to the strength found in adversity and the importance of mindfulness in the face of life's challenges. We hope this episode inspires and provides valuable insights to caregivers and families facing similar journeys.

You can buy Hailey's book, What is Epilepsy?, on Amazon.

About Katie Taylor, CCLS and Child Life On Call:

Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform revolutionizing pediatric healthcare by putting parents at the center of the medical journey. With over 13 years of experience as a certified child life specialist, Katie has made significant contributions to the field of child life and the families she’s served with over a decade of working at the bedside. She is an accomplished author, engaging child life and entrepreneurship speaker, and the Child Life On Call Podcast host. Katie's work emphasizes the vital role of child life services in supporting caregivers and enhancing children's medical journeys.

Learn 6 Positions to Help Kids Feel Comfortable and Safe During Procedures

Instagram | LinkedIn | Amazon

I'm his mom, and I carried him for almost nine months, and no one loved him more than me. I'm his expert, and I'm going to own that. - Kathryn Whitaker

Have you ever found yourself amazed at the strength people find in the toughest of times? 

Well, on today’s podcast, we’re talking about one of the common themes we’ve seen over the past 200 episodes of Child Life On Call and something I consistently see parents share on social media. 

We’re talking about the incredible phenomenon of PTG, or post-traumatic growth. We're taking a special look at one of the deeply personal journeys a parent has embarked on during and after their child's medical battles. Together, we'll explore how these intense experiences can unexpectedly sow seeds of strength, knit tighter family connections, and awaken a profound appreciation for every precious moment of life. And guess what? We have a special guest, parent, and passionate advocate, Kathryn Whitaker, who's here to share her inspiring story. So grab your favorite cup of comfort, settle in, and join us as we uncover the resilience and beautiful transformation hidden within the heart of every parent's medical challenge.

Kathryn Whitaker, a proud 6th generation Texan and a mother of six, brings a wealth of personal experience and resilience to the Child Life On Call podcast. With a background in agriculture and marketing, Kathryn's journey as a seasoned NICU parent has inspired her to advocate for families facing similar challenges. Her work with Hand to Hold, a national nonprofit supporting NICU families, showcases her passion for providing strength and support to others dealing with the NICU experience. Through her difficult experiences, Kathryn has found personal growth and hope, offering valuable insights to parents navigating similar paths. Her unique perspective and unwavering resilience make her a compelling voice for anyone seeking strength and inspiration during challenging times.

You are not going to be the same person, thankfully, but hopefully a stronger, better version of the person who walked in the door, as opposed to the person who walks out. - Kathryn Whitaker

The resources mentioned in this episode are:

• HandtoHold.org

• Check out the NICU Heroes podcast for NICU professionals looking to earn continuing education credits while learning from amazing guests.

• Purchase Kathryn Whitaker's book Live Big. Love Bigger. on Amazon or wherever books are sold for an inspiring and transformational read about living an intentional life.

• Kathryn on Instagram.

About Katie Taylor, CCLS and Child Life On Call:

Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform revolutionizing pediatric healthcare by putting parents at the center of the medical journey. With over 13 years of experience as a certified child life specialist, Katie has made significant contributions to the field of child life and the families she’s served with over a decade of working at the bedside. She is an accomplished author, engaging child life and entrepreneurship speaker, and the Child Life On Call Podcast host. Katie's work emphasizes the vital role of child life services in supporting caregivers and enhancing children's medical journeys.

Learn 6 Positions to Help Kids Feel Comfortable and Safe During Procedures

Instagram | LinkedIn | Amazon 

In this milestone 200th episode, Katie delves into a unique mix of content, answering insightful questions from Instagram, sharing a personal story about her daughter Cameron's burn accident, and reflecting on the impactful moments of 2023.

The episode features discussions on a variety of books Katie read throughout the year, the best toys of 2023, and tackles the challenging aspects of balancing work and personal life as a child life specialist. Katie's candid sharing of Cameron's experience provides a heartfelt insight into the realities of parenting and healthcare challenges. 

Toys that I recommend in this podcast:

Smart Sketch 2.0 by Flywheel

Melissa & Doug Sticker Wow (At Wal-Mart Only)

Katie also shares her thoughts on balancing professional responsibilities with personal life, offering valuable insights for child life specialists and parents alike. Additionally, she discusses her favorite books and toys of 2023, showcasing how these resources can be instrumental in child life practice.

This episode is not just a celebration of reaching a significant milestone but also a testament to the power of shared experiences and the strength of our community. Tune in to hear Katie's heartfelt reflections and valuable advice as we continue our journey together in supporting families through healthcare experiences.