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47 - Part 1: Kevin & Allison—Where Their Caregiving Story Begins
Manage episode 489225565 series 3595300
In the first episode of our five-part series, RuthAnn introduces her friends, Kevin and Allison, devoted parents of three and dedicated caregivers to their son with multiple disabilities. This series offers an honest and vulnerable inside look at the challenges, fears, and joys of raising a child with multiple disabilities, providing listeners with a rare perspective on the realities of caregiving.
In this episode Kevin and Allison share their family’s journey, discussing the moment they discovered their son’s initial diagnosis, the unfolding of additional disabilities, and the profound ways these experiences have shaped their lives. They open up about the emotional and practical challenges they face, the resilience they’ve built, and the pivotal event that inspired them to become advocates—first for their son, and then for others facing similar challenges in the caregiving community.
Tune in for a heartfelt conversation that highlights the power of vulnerability, the importance of community, and the enduring hope found in even the most difficult moments of caregiving.
Key Moments in This Episode
[00:00:18] Meet Kevin and Allison: RuthAnn introduces her friends and they give listeners a glimpse into their family life.
[00:08:08] Navigating Early Questions: RuthAnn discusses the initial diagnosis and asks if healthcare providers addressed their concerns about their son's development.
[00:10:14] Finding Resources: The conversation highlights a helpful website for rare chromosome disorders.
[00:11:00] Receiving the Diagnosis: Kevin and Allison recount how they learned about their son's diagnosis and what that journey was like for their family.
[00:13:25] Discovering Community: They share how it took nearly eight years before finding support within the rare chromosome disorder community.
[00:18:52] Family Decisions: Kevin and Allison reflect on how their son's diagnosis influenced their choices about having more children.
[00:30:29] Balancing Roles: RuthAnn asks Kevin about managing his career alongside caring for three children, including one with multiple disabilities.
[00:34:30] Sharing Knowledge: Kevin discusses two of the books he has authored on disability.
[00:35:19] Becoming Advocates: Allison tells the story of the pivotal experience that led them to advocacy, and both describe what their advocacy work involves.
[00:45:41] Advice for New Parents: Kevin and Allison offer guidance to parents just starting their journey with a child with disabilities.
Links to items mentioned in this episode:
2p15p16.1 microdeletion syndrome FTNW.pdf
Unique | Understanding Rare Chromosome and Gene Disorders
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