Episode 1: Stronger Together: Parenting Children with Limb Differences
This episode briefly explains our "why" for this podcast. Our primary reason for the Parenting Children with Limb Differences (PCWLD) podcast is to CONNECT with parents - especially moms - who have children with a limb difference. We hope that you can find some comfort, validation, empathy and community here. We want you to know - YOU ARE NOT ALONE!
Episode 2: Ali's Story: Navigating Tyler's Arrival & Needs
In this episode, we learn about Ali's personal journey before and after Tyler's arrival. Together, we explore the complexities of Ali's experiences; from fertility issues, to the excitement of pregnancy with Tyler, to the shocking news about Tyler's limb difference, and beyond. Ali offers a deep level of openness and compassion as she shares her thoughts and life with Tyler over the past few years. Join us, as we discuss the challenges and triumphs that have led to Ali's family's beautiful and unique life with Tyler.
Episode 3: Kari's Story: Mackenzie's Mighty Beginnings
In this episode, Kari shares her personal journey of parenting a child with a limb difference. From the unexpected moment of discovering Mackenzie’s limb difference leading to a chaotic birth experience to navigating the challenges and joys of the first five years, Kari offers raw and honest insights. Join us as we explore the emotional rollercoaster, the lessons learned, and the unwavering love that has shaped their family's story.
Episode 4: Tarah’s Story: Motherhood and Mel
In this episode, Tarah Behren shares her strength, courage, and heart with us as she reflects on the last several years. Tarah explains the details of learning about her daughter Melanie’s limb difference at the 20-week anatomy scan, all of the emotions that came with that, and all of the unexpected and wonderful things being Mel’s (and Kelsey’s) mom has gifted her. Additionally, as a special education teacher, Tarah offers a unique perspective and provides us with her thoughts about resources, advocacy and inclusion.
Episode 5: Back to School Special
In this episode, Kari and I discuss all things back to school. From handing out introduction flyers to teachers and staff, to making sure our littles have what they need to be prepared for the year ahead, Kari and Ali share their ideas and hopes for a great start to the new school year. They also discuss their admiration for the athletes competing in the upcoming Paralympics.
Episode 6: Navigating & Advocating: Early Intervention, IEPs, and 504 Plans
In this educational episode, Tarah Behren returns and talks with Kari and Ali about experiences with the Early Intervention program, the transition to the Early Childhood program through the school district, IEPs and 504 plans. Tune in for helpful tips on navigating and advocating for your child!
Episode 7: Rose's Story: Loving Life With Avery
In this episode, Rose Andrews shares with us how despite facing adversity throughout her life (including being surprised at her daughter's birth with her daughter's upper limb difference and entering postpartum during a worldwide pandemic), she has been able to reframe her life into a positive perspective, practice gratitude, and lean on resources to navigate challenges.
Please note: we're a couple of moms who are recording remotely from our homes. Throughout this episode, you may hear children and other noises in the background. We've done our best to edit out these background noises but there may still be some tiny voices here and there. We thank you for your patience with us as you ignore these background interferences and listen to Rose's powerful messages around love, understanding, and providing a safe, inclusive space for her daughter.
Episode 8: Krystal's Story: Early Parenting Experiences with Brooklynn
In this episode, Krystal Pelletier shares with us her journey through fertility treatment, pregnancy, the shock of learning about Brooklynn's limb difference at birth, the emotional battle Krystal went through postpartum, and the supports she currently has in place for Brooklynn (and herself) today. Krystal shares her challenges and triumphs with warmth, humor, hope and love throughout this heartfelt episode.
Episode 9: Interview with Laura Clubok, Pediatric Occupational Therapist - Part 1
In this two-part special, we interview Laura Clubok- Pediatric Occupational Therapist from Columbus Ohio. Laura is the creator of On the Other Hand Therapy (and On the Other Hand I Have a Thumb). She offers a unique perspective, as she is also an adult who was born with a hand difference. Part 1 dives into Laura’s childhood and growing up with a limb difference. It also explores her pursuit of her career as a Pediatric Occupational Therapist and her passion for helping children with limb differences grow up to be healthy, well-adjusted individuals. Laura offers her expert insight and advice as a Pediatric Occupational Therapist, an adult with lived experience as a member of the limb difference community, and a parent herself - on supporting children with limb differences.
Thanks for tuning into the Parenting Children with Limb Differences Podcast. Follow us, leave a review, and share this episode with your friends and family.
Learn more about Laura Clubok and On the Other Hand Therapy by visiting https://ontheotherhand.org/therapy/
Episode 10: Interview with Laura Clubok, Pediatric Occupational Therapist - Part 2
This episode is the SECOND part of our two-part interview with Laura Clubok- Pediatric Occupational Therapist from Columbus Ohio. Part two is packed with tips on how parents can support their children with limb differences by helping them to build strong bodies and minds, including how to prevent overuse syndrome. Laura shares her enjoyment in collaborating with other professionals and actively participates with other organizations including, but not limited to Hands to Love and Lucky Fin, to educate the community on the best ways to support individuals with limb differences. Additionally, Laura expresses how healing it has been for her to find a community for herself as an adult with other like-minded (and similar bodied) individuals, while also fulfilling her passion of connecting the next generation of children with limb differences to services and resources to help them feel a sense of belonging, and lead happier, more fulfilling lives.
Thanks for tuning into the Parenting Children with Limb Differences Podcast. Follow us, leave a review, and share this episode with your friends and family.
Learn more about Laura Clubok and On the Other Hand Therapy by visiting https://ontheotherhand.org/therapy/
Episode 11: Beyond Limits: The Power of Camp No Limits
In this episode, Kari breaks down the Camp No Limits Lake Forest experience. From the breakout sessions, to the amazing vendors with adaptive equipment, Kari delves into why Camp No Limits is a must-attend event for the Limb Difference/Limb Loss community! The opportunity to connect with other families navigating similar journeys makes this entire experience invaluable!
Worried about the cost of Camp No Limits? As Kari describes, there are scholarships and fundraising opportunities available to make Camp No Limits more accessible and affordable!
Episode 12: Sarah's Story: A Personal Journey of Growth, Love, and Liam
In this episode, Sarah takes us on a journey through her life, sharing her unique story as BOTH an adult with a limb difference and the parent of a child with a limb difference. Sarah describes some of the challenges of growing up with a limb difference and how her limb difference has shaped her into the (beautiful) human she is today. She talks about finding herself, falling in love, what inspired her to become a teacher, and the importance of community. Sarah also shares how her life experiences have helped her to show up and advocate in an intentional way for her son, Liam, who was born with an upper limb difference. Additionally, Sarah expresses her hopes for her son and what she envisions for all of their lives, going forward.
Episode 13: The Adaptive Tools We Are Using Right Now
In this episode, Kari and Ali dive in and discuss the adaptive tools they are currently using to support their children with upper limb differences. They share ideas around adaptive equipment, adaptive clothing, and advocate for the need for more businesses to create more adaptive tools in support of the limb difference community.
Episode 14: Fall School Check-In: How Mack & Tyler are Doing?
In this episode, Kari and Ali share some updates on how school is going for Mack and Tyler. They share the challenges of adjusting to new routines, positive social-emotional experiences, 504 evaluation discussions, and more.
Episode 15: Smiles for Miles & Dimples for Days – Rachel & Miles’ Story
In this episode, Rachel shares with us her personal journey from the challenges of conception and Miles’ traumatic birth. She also shares with us how she learned about Miles' limb differences (with a diagnosis of amniotic band syndrome), and walks us through Miles’ development and surgeries. Rachel identifies the resources that have been helpful and offers advice for other parents, as well as her hopes for Miles' future.
TRIGGER WARNING – there is some descriptive content involving Rachel's traumatic birth story that may be difficult for some listeners to hear.
Wrapping up season 1 of PCLWD, this is a two-part, heartfelt interview with Emma Gilpin. Emma is a Pediatric Nurse and mom of two, located in the U.K. Her eldest child, Miles, was born with an upper limb difference. Emma is also a major limb difference advocate who is involved with both Reach and LimbBo, two fantastic organizations in the UK.
In part one, we learn more about Emma and Miles. Emma shares how learning of Miles’ limb difference and researching led her to connect with Reach and LimbBo. She also shares how her journey with motherhood and her experiences have informed and inspired her professional work, and igniting her passion for supporting the limb difference community.
In part 2, Emma discusses the importance of having open dialogue with our children about their limb difference and working with them to develop the language to effectively and confidently manage questions about their limb difference (or for our typical children, to discuss their sibling’s limb difference). She also shares her aspirations in connecting every family who finds out that they will have a child with a limb difference (whether at scan or at birth) with resources, including home visits. Emma also acknowledges and addresses the grief associated with finding out she would have a different baby then expected (that no one talks about but many feel), along with how reframing, and moving toward acceptance and excitement of the new vision, has helped her; especially, looking forward to what she imagined her child would teach her. More conversations around adaptive equipment, challenges and successes around managing activities of daily living are also addressed in part two of this episode.