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

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Give medicine to your child without it becoming a wrestling match
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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.

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202: Infantile Spasms, Healing from Trauma and Emotional Resilience

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

01/17/24 • 47 min

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

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Episode 158 | Kristen’s Story - Licensed Family Therapist - Anxiety in Children

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

03/01/23 • 25 min

On today's episode, Katie meets with Kristen McNeely, a Licensed family therapist who is in expert on Anxiety in Children. Kristen shares the importance of how we respond to anxiety as parents and caregivers, helping children understand what anxiety is and how we can help them navigate their feelings. This episode is full of ways to support your child through anxious moments and knowing when to get them help.

[4:12] Kristen introduces herself

[5:45] Seeing more behavior disorders that are manifesting as anxiety

[7:15] Your child's anxiety is not your fault

[7:45] The way we respond to their anxiety is important

[10:19] Understanding what anxiety is

[12:15] Accommodating vs Supporting

[14:42] Being systematic in your approach

[15:45] Our children are people too

[18:20] Getting a call about her son at school

[19:18] Wearing a professional hat as a parent

[20:23] Shifting your perspective

[21:20] Every situation is not an indicator of a problem

Connect with Kristen

Freeing your Child from Anxiety by Tamar Chansky

SPACE

Books Kristen Recommends

Breaking Free of Anxiety and OCD Eli Lebowitz

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

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.

Episode 112 | Sehreen’s Story: A Daughter Requires Neurosurgery

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

03/23/22 • 37 min

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 child in medical situations

[15:00] How Sehreen coped while waiting for a diagnosis for her daughter

[18:18] How Sehreen’s daughter coped during her time in the hospital

[24:25] The role of child life specialists

[26:02] What helps Sehreen to recharge

[27:31] The difficulties with having a child with medical needs

[29:02] What Sehreen’s daughters have taught her

[31:52] Sehreen’s children’s health startup (Sleuth)

CONNECT WITH SEHREEN

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Have you heard? The Child Life On Call mobile app for parents, kids and their care team will be available in 2022. Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges. We are so glad you are here.

Website: childlifepodcast.com

Merch: bonfire.com/store/childlifeoncall

Instagram: instagram.com/childlifeoncall

Facebook: facebook.com/childlifeoncall

Twitter: twitter.com/childlifeoncall

YouTube: https://www.youtube.com/channel/UCnh95T1MOYtbpBxJaZqg7rg

Episode 164 | [Repost] How to Talk with Kids About Child Abuse with Jane Donovan

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

04/10/23 • 33 min

April is Child Abuse awareness month. We have reposted this episode to bring awareness and give you tangible tools to speak with your kids about child abuse.

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

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.

Episode 159 | Ryan’s Story - A son with Muscular Dystrophy (Becker’s)

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

03/08/23 • 45 min

On today's episode of the podcast, Katie interviews Ryan who's son has Becker's Muscular Dystrophy. Ryan tells the story of the road to diagnosis for his son Jack and how their family coped along the way. Hear about what fueled Ryan to start an organization to help fund research to change the lives of children and adults with Muscular Dystrophy. This episode is filled with inspiration, hope and the raw perspective of a father advocating for his son.

[4:20] Ryan Introduces himself

[7:24] They noticed Jack was toe walking at 3 years old

[9:20] Braces helped Jack walk flat footed

[11:11] Noticing a difference in Jack's muscles

[12:30] Elevated protein levels indicate there is an issue

[13:36] Muscular Dystrophy diagnosis for Jack and other family members

[15:30] How Ryan coped with the diagnosis

[18:50] Learning very quickly who your people are

[20:00] Trust and rely on those who reach out to help

[21:06] A family friend explains Jack's condition to his children

[23:00] The regret of past decisions

[25:09] Jack's older sister's positive impact

[27:39] The gift of the sibling relationship

[28:56] Creating an organization to find a solution

[30:20] As simple as a blood test

[31:55] Curing Muscular Dystrophy with gene therapy

[35:00] How a connection lead to the beginning of the research

[37:54] Going down a rabbit hole

[39:53] Accepting that we don't have all the answers

[40:49] The level of bravery

[42:11] He teaches me more than I will ever teach him

[44:20] Stay tuned for published research

Connect with Ryan

Facebook

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

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.

Episode 144 | Alex’s Story - A NICU Dad Perspective

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

11/02/22 • 46 min

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 relaying so much information in the NICU

[31:32] Baby was transported to the Children's Hospital

[33:00] Setting foot in the NICU for the first time

[34:40] His wife meeting the baby

[37:20] The trauma and the stress is at a different level for Dads

[37:52] The NICU is just a warm up for home life

[39:15] Taking better care of yourself

[41:09] Sharing your experience makes you feel less alone

Connect With Alex

Hand to Hold NICU Dad Podcast

NICU Dad Website

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

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.

Catch up with CLOC on Instagram, Facebook and meet Katie for a Q+A every Monday at 10 AM CST.

Episode 157 | Crystal Polk - Social Worker + Caregiver Expert

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

02/22/23 • 27 min

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

Unseen Caregiver Documentary

Crystal recommends using Psychology Today to search for a qualified therapist. View Crystal and other therapists here.

Crystal is LEND Certified. Read more about the LEND program here.

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

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.

Episode 156 | Michele’s Story - Child loss and the sibling relationships

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

02/15/23 • 46 min

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 body

[23:20] Learning how to say the word 'die'

[25:40] On the plane with a family from their school

[26:55] Preparation helped her cope with his death

[28:40] Unsettling for. young children to not be aware of what is happening

[30:50] Sharing about her daughter after her son's death

[32:31] Asking about what grade David would be in

[33:54] Middle School was challenging at times

[35:48] How her daughter adjusts her perspective and compassion through her wisdom of the loss of her brother

[37:24] Parenting from the heart

Connect with Michele

Guide to Good Grief

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.