Disability + Siblings: What the Research Says with Meghan Burke, PhD

How Disability Changed This Dad’s Idea of “Normal” with Mike Erre

E25—What do you do when the child you imagined isn’t the child you have? Pastor Mike Erre experienced the slow dismantling of achievement-based parenting when his son with Down syndrome was born. If you’re exhausted by comparisons and milestones, this conversation invites a different way forward: noticing, delighting, and being with your child as they are. 00:00 Introduction and Personal Stories 03:06 Connecting with Your Child 06:54 Redefining Success and Celebration 11:40 Navigating Grief and Emotions 16:16 Building Connections and Community 19:01 How Dads Can Help Create a World of Belonging MENTIONED IN THIS EPISODE: * Voxology podcast [https://www.voxologypodcast.com/] * Hope Heals Camp [https://hopeheals.com/camp-and-retreats/] _ WATCH this conversation on YouTube: Amy Julia Becker on YouTube [https://youtu.be/jZa9Z9fpq_g] SUBSCRIBE to Amy Julia's Substack: amyjuliabecker.substack.com [https://amyjuliabecker.substack.com/] JOIN the conversation on Instagram: @amyjuliabecker [https://www.instagram.com/amyjuliabecker/] LISTEN to more episodes: amyjuliabecker.com/shows/ [https://amyjuliabecker.com/shows/] _ ABOUT OUR GUEST: Mike Erre is the lead pastor of Journey Church in Tennessee and speaks on faith, culture, and spiritual formation. He is also the author of several books and cohost of the Voxology [https://www.voxologypodcast.com/] podcast. He is a dad to three children, including their youngest son who has Down syndrome. _ Take the Next Step is produced in partnership with Hope Heals Camp. Hope Heals [https://hopeheals.com/] creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inclusive, intentional, inter-ability communities. Find out more about our resources, gatherings, and inter-ability communities at hopeheals.com [http://hopeheals.com/]. Follow on Instagram: @hopeheals and @hopeheals.camp We want to hear from you. Send us a text! [https://www.buzzsprout.com/2525603/fan_mail/new]

From Fear to Future: How Families Plan for a Good Life with Sheli Reynolds, PhD

E24—"I don't know what life can look like for my child." If you've ever felt that, this episode is for you. Sheli Reynolds, PhD, is a leader in disability innovation. She joins Amy Julia Becker to share free, practical tools that support individuals and families experiencing disability in planning for friendship, independence, employment, and joy. 00:00 Dr. Sheli Reynolds and Disability Advocacy 03:40 Understanding the Lifecourse Framework 09:15 Tools for Envisioning a Good Future 12:29 Person-Centered Planning Explained 16:04 The Importance of Life Experiences 21:36 Taking the First Step: Practical Advice for Parents MENTIONED IN THIS EPISODE: * LifeCourse [https://www.lifecoursetools.com/lifecourse-library/lifecourse-framework/] (home page) * Charting a LifeCourse Framework [https://www.lifecoursetools.com/lifecourse-library/lifecourse-framework/] * LifeCourse Facebook page [https://www.facebook.com/lifecoursenexus] _ WATCH this conversation on YouTube: Amy Julia Becker on YouTube [https://youtu.be/DEa_eTh3PTg] SUBSCRIBE to Amy Julia's Substack: amyjuliabecker.substack.com [https://amyjuliabecker.substack.com/] JOIN the conversation on Instagram: @amyjuliabecker [https://www.instagram.com/amyjuliabecker/] LISTEN to more episodes: amyjuliabecker.com/shows/ [https://amyjuliabecker.com/shows/] _ ABOUT OUR GUEST: Sheli Reynolds is the lead developer of the Charting the LifeCourse framework and a national leader in person- and family-centered disability innovation. Her passion, knowledge, and experience comes from growing up as a sibling of a brother with developmental disabilities. She has spent her career advancing research, policy, and practices that support individuals and families across the lifespan. She serves as Associate Director at the UMKC Institute for Human Development, where she has worked for 28 years, and has held national leadership roles, including on the President’s Committee for People with Intellectual Disabilities. She has her Masters in Occupational Therapy from Rockhurst University and earned her doctorate in Public Administration and Sociology from the University of Missouri, Kansas City.  www.lifecoursenexus.org [http://www.lifecoursenexus.org/]https://www.linkedin.com/company/lifecoursenexus/ [https://www.linkedin.com/company/lifecoursenexus/]https://www.facebook.com/lifecoursenexus/ [https://www.facebook.com/lifecoursenexus/]https://www.linkedin.com/in/michelle-sheli-reynolds-phd/ [https://www.linkedin.com/in/michelle-sheli-reynolds-phd/] _ Take the Next Step is produced in partnership with Hope Heals Camp. Hope Heals [https://hopeheals.com/] creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inclusive, intentional, inter-ability communities. Find out more about our resources, gatherings, and inter-ability communities at hopeheals.com [http://hopeheals.com/]. Follow on Instagram: @hopeheals and @hopeheals.camp We want to hear from you. Send us a text! [https://www.buzzsprout.com/2525603/fan_mail/new]

How to Find Your People When You Feel Invisible with Katherine Wolf

E23—The meals stop coming. The texts slow down. And suddenly you feel like you’re navigating disability alone. Friends can be great at showing up in a crisis, but how do you find community for your family when life stays hard day after month after year? Katherine Wolf, stroke survivor, mother, and disability advocate, shares her story with Amy Julia Becker. They consider: * Grief * Limits of toxic positivity * Finding community that helps families survive and flourish 00:00 Introduction and Connection 03:37 Is a Good Future Possible? 08:45 The Role of Community in Healing 13:01 Sustaining Community Connections 18:31 Navigating Disappointment in Community 21:05 Creating Long-Term Connections 25:12 Taking Steps Towards Connection MENTIONED IN THIS EPISODE: * Hope Heals [https://hopeheals.com/] * Hope Heals Camp [https://hopeheals.com/camp-and-retreats/] * GoodHard Story podcast [https://hopeheals.com/podcast/] * Voxer [https://www.voxer.com/] _ WATCH this conversation on YouTube: Amy Julia Becker on YouTube [https://youtu.be/vrKOXhuwvLM] SUBSCRIBE to Amy Julia's Substack: amyjuliabecker.substack.com [https://amyjuliabecker.substack.com/] JOIN the conversation on Instagram: @amyjuliabecker [https://www.instagram.com/amyjuliabecker/] LISTEN to more episodes: amyjuliabecker.com/shows/ [https://amyjuliabecker.com/shows/] _ ABOUT OUR GUEST: Katherine Wolf is an author, advocate, and co-founder of Hope Heals. After she survived a near-fatal brainstem stroke at age 26, her family’s journey through disability has become a public witness that good and hard can co-exist in the same story. Through caregiving, storytelling, and lived theology, Katherine is inviting others into a vision of hope, interdependence, and embodied resilience. She and her husband Jay live in Atlanta with their two sons. Website [http://www.hopeheals.com/]: https://hopeheals.com/ [https://hopeheals.com/] Instagram accounts: @hopeheals; @opehealscamp; @mendcoffee _ Take the Next Step is produced in partnership with Hope Heals Camp. Hope Heals [https://hopeheals.com/] creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inclusive, intentional, inter-ability communities. Find out more about our resources, gatherings, and inter-ability communities at hopeheals.com [http://hopeheals.com/]. Follow on Instagram: @hopeheals and @hopeheals.camp We want to hear from you. Send us a text! [https://www.buzzsprout.com/2525603/fan_mail/new]

Disability + Siblings: What the Research Says with Meghan Burke, PhD

E22—Is having a sibling with a disability hard on kids? Researcher Meghan Burke has spent years studying (and living) this question. Her findings might surprise you. In this episode, she joins Amy Julia Becker to share: * what siblings actually say about growing up alongside disability * why the "burden" narrative is mostly a myth * the one conversation every family needs to have before a crisis hits 00:00 Introduction to Sibling Relationships in Disability 02:48 Research Insights on Sibling Dynamics 05:57 Understanding the Myths and Realities 09:34 The Experience of Being Overlooked as a Sibling 10:59 Common Strengths Among Siblings 12:48 Siblings' Needs and Involvement 16:41 The Normalization of Disability in Sibling Relationships 18:16 Fostering Mutual Care in Families 23:02 Future Planning and Sibling Responsibilities _ WATCH this conversation on YouTube: Amy Julia Becker on YouTube [https://youtu.be/v61BOZEBEeY] SUBSCRIBE to Amy Julia's Substack: amyjuliabecker.substack.com [https://amyjuliabecker.substack.com/] JOIN the conversation on Instagram: @amyjuliabecker [https://www.instagram.com/amyjuliabecker/] LISTEN to more episodes: amyjuliabecker.com/shows/ [https://amyjuliabecker.com/shows/] _ ABOUT OUR GUEST: Meghan Burke is a professor of special education in Peabody College at Vanderbilt University. Her research interests include advocacy, families (i.e., parents and siblings) of individuals with disabilities, and disability policy. Her research examines how families advocate for services with their family members with disabilities. She also conducts research examining how siblings of individuals with disabilities transition to caregiving roles. Website: https://peabody.vanderbilt.edu/bio/meghan-burke/ [https://peabody.vanderbilt.edu/bio/meghan-burke/] Linked in: https://www.linkedin.com/in/meghan-burke-4191239/ [https://www.linkedin.com/in/meghan-burke-4191239/] Instagram: https://www.instagram.com/meghanbm/ [https://www.instagram.com/meghanbm/] _ Take the Next Step is produced in partnership with Hope Heals Camp. Hope Heals [https://hopeheals.com/] creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inclusive, intentional, inter-ability communities. Find out more about our resources, gatherings, and inter-ability communities at hopeheals.com [http://hopeheals.com/]. Follow on Instagram: @hopeheals and @hopeheals.camp We want to hear from you. Send us a text! [https://www.buzzsprout.com/2525603/fan_mail/new]

After Diagnosis: Grief Isn’t the End of the Story with Dr. Curt Thompson

E21—As the mom of a daughter with Down syndrome, I have felt my fair share of complicated emotions over these past twenty years. And sometimes, I haven't known what to do with those emotions, especially the ones that seem negative, like grief or fear. I'm talking today with psychiatrist, speaker, and author Curt Thompson about all these things—how we can name our emotions in safe and trusted communities, and the way receiving comfort in the midst of those emotions can also open us up to hope and joy.  00:00 Introduction to Grief 06:15 The Importance of Naming Grief in Community 11:58 Navigating Grief in the Context of Disability 18:32 Connecting to the Fullness of All of Our Emotions 24:12 Practical Steps for Emotional Awareness MENTIONED IN THIS EPISODE: * John 9 [https://www.biblegateway.com/passage/?search=John%209&version=NASB] * The Center for Being Known [https://www.thecbk.org/] * New Story Behavioral Health [https://www.newstorybehavioralhealth.com/] * Books by Dr. Curt Thompson [https://curtthompsonmd.com/books/] _ WATCH this conversation on YouTube: Amy Julia Becker on YouTube [https://youtu.be/FkBuk2vylIA] SUBSCRIBE to Amy Julia's Substack: amyjuliabecker.substack.com [https://amyjuliabecker.substack.com/] JOIN the conversation on Instagram: @amyjuliabecker [https://www.instagram.com/amyjuliabecker/] LISTEN to more episodes: amyjuliabecker.com/shows/ [https://amyjuliabecker.com/shows/] _ ABOUT OUR GUEST: Psychiatrist, speaker and author Curt Thompson connects our intrinsic desire to be known with the need to tell truer stories about ourselves — showing us how to form deep relationships, discover meaning and live integrated, creative lives. www.curtthompsonmd.com [http://www.curtthompsonmd.com/]IG @curtthompsonmd FB@curtthompsonmd Curt's podcast: Being Known Podcast [https://www.beingknownpodcast.com/] _ Take the Next Step is produced in partnership with Hope Heals Camp. Hope Heals [https://hopeheals.com/] creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inclusive, intentional, inter-ability communities. Find out more about our resources, gatherings, and inter-ability communities at hopeheals.com [http://hopeheals.com/]. Follow on Instagram: @hopeheals and @hopeheals.camp We want to hear from you. Send us a text! [https://www.buzzsprout.com/2525603/fan_mail/new]