3d ago

Episode 10 - Finding a Way with Rett Syndrome: A Conversation with Sarah

In Episode 10, we talk with Sarah about her life with 9-year-old Aleah, who lives with Rett syndrome. We discuss the long search for a diagnosis, early intervention, choosing a care team that listens, and Sarah’s experience appealing Medicaid waiver denials. She reflects on the work that can be overlooked when caregiving becomes your everyday routine, and why asking for support can feel so difficult. Sarah also opens up about navigating much of Aleah’s care on her own, and accepting help during her own cancer treatment. Alongside those challenges are triumphs like wheelchair adapted costumes from May We Help, a custom stroller solution with help from a robotics team, adapted water skiing, and the immense sense of belonging at Rett U camp at The Center for Courageous Kids. Aleah’s humor, personality, and love of being around people stay at the heart of the conversation. This episode is a reminder to see the person beyond the paperwork, make room for joy, and build a community that shows up. Sarah’s first lesson for listeners: whatever the diagnosis, your child is still your child. Meet them where they are. You will find a way. #TheRareRemix #RettSyndrome #CaregiverSupport #DisabilityInclusion

Sep 16

Episode 09 - Down Syndrome Is the Least Interesting Thing About Her: Staci & Nate's Story

In Episode 09, The Rare Remix welcomes Staci and Nate for an honest conversation about raising their daughter Amelia, learning her Down syndrome diagnosis at birth, and discovering that a diagnosis can be life-changing while still being only a small part of who a person is. They share the emotional shift from fear and uncertainty to knowing Amelia as a spunky, opinionated, deeply empathetic child. They also discuss the realities behind a family life that may look easy from the outside: speech that is not always easy to understand, elopement and safety concerns, constant supervision, and the pressure of trying to understand a need that cannot always be expressed clearly. The conversation explores public reactions, sibling and family dynamics, marriage, and why children often approach disability with more natural curiosity and acceptance than adults. Staci and Nate also talk about navigating insurance, Medicaid, medical paperwork, and the life-changing value of finding GiGi's Playhouse, community resources, and other families who can offer both practical help and a fuller picture of the future. This episode reaches far beyond one diagnosis. It is for newly diagnosed families, parents, educators, and anyone who wants to move past assumptions, make inclusion more ordinary, and see the whole person. #TheRareRemix #DownSyndrome #DownSyndromeAwareness #DisabilityInclusion #DownSyndromeFamily

Sep 3

Episode 08 - What Physical Therapists Want Caregivers to Know

Caregiving is physical work, but most families are never taught how to protect the body doing it. In Episode 08, The Rare Remix welcomes pediatric physical therapists Emily, Brittney, and Katelyn for a practical roundtable about making everyday care safer and more sustainable. They discuss lifting and transfer mechanics, why keeping the person close can reduce strain, and how allowing a child, teen, or adult to participate in movement can build strength while reducing the caregiver's workload. They also cover stretching, functional strength training, signs that it may be time to add adaptive equipment, and what might be important for a PT to know about emerging therapeutics and scientific advancements. The conversation reaches beyond body mechanics. The therapists explain why pediatric PT often means treating the whole family, how they approach rare or unfamiliar diagnoses, and why care should be based on the person in front of them rather than assumptions attached to a label. This episode is for parents, grandparents, siblings, educators, therapists, direct support professionals, and anyone supporting a child or loved one with complex medical needs. Protecting your body is not separate from caregiving. It is part of the care plan. #TheRareRemix #CaregiverSupport #PediatricPhysicalTherapy #DisabilityParenting #ComplexCaregiving

Aug 19

Episode 07 -Disability From A Kid’s Perspective

In this mini-episode, Declan and Liam join The Rare Remix to talk about their cousin Ava, who has Rett syndrome and uses a Tobii eye-gaze device. They explain what they have learned about communicating with someone who does not rely on speech, why not speaking is not the same as not understanding, and how they use their 3D printer to make tools that help Ava participate. The boys also connect their own experience to a book read at school featuring a nonspeaking character whose intelligence is underestimated. From books and technology to adaptive activities and the everyday choice to invite someone to play, their perspective shows how naturally children can understand disability when they are given honest answers, useful context, and room to ask questions. Declan puts it simply: "Just because they're different doesn't mean they're different." This conversation is about Rett syndrome, but its message reaches much further: disability may change how someone communicates or participates without changing the need to connect, play, and belong. After listening, visit therareremix.com for our companion guide to disability-inclusive books, movies, and shows organized by age.

Aug 5

Episode 06 - From Sister to Caregiver: a Conversation with Tami and Donnie

In Episode 6, The Rare Remix welcomes Tami and Donnie, who recently became caregivers and guardians for Tami's younger sister, Lori. Born in 1968, Lori spent most of her life at home with parents who built their family around her care. After her father died and her mother's health declined, responsibility gradually shifted to Tami and Donnie. They share what that transition looked like emotionally and practically: a mother learning that transferring guardianship did not erase her role as mom, a sister becoming the primary medical decision maker, and a couple reshaping retirement, marriage, home, and daily routines around full-time care. The family had planned ahead through years of conversations, estate planning, trusts, guardianship, and financial arrangements. Tami and Donnie explain what helped, what remained difficult, and why families should share information and make plans before a crisis. The conversation also makes room for the life inside the care: Lori's love of 1970s music, church, an accessible van, baseball trips, and the partnership that helps their household work. Rooted in Rett syndrome but relevant across diagnoses, this episode is for parents, adult siblings, spouses, and anyone planning for the future of a loved one with complex needs.

Jul 22

Episode 05 - Rett Syndrome, Mobility & Caregiving: a Conversation with Allison and Brendan

In Episode 5, The Rare Remix welcomes Allison and Brendan, parents to Anya and Clare. Clare was diagnosed with Rett syndrome in 2020, just as the world shut down, leaving their family to navigate life-changing news while clinics, schools, therapies, and in-person support were suddenly out of reach. Allison and Brendan share the realities of raising a child who runs, jumps, climbs, and explores, and why mobility does not necessarily make caregiving easier. They discuss constant safety planning, elopement and water risks, adaptive equipment and support systems that can mistake walking for independence, sibling dynamics, puberty, travel, and the practical solutions families share with one another. Allison also offers a powerful distinction between being a mom and being a caregiver: the emotional relationship of being Clare's mother alongside the hands-on work required to keep her safe and supported. Together, she and Brendan explain how perspective, routine, flexibility, humor, community, and connection help their family make room for both. Along the way, they share how parent networks, local disability communities, and Clare sMILES for a Cure have helped turn isolation into connection and advocacy. This conversation is rooted in Rett syndrome, but its lessons reach any parent, grandparent, sibling, educator, therapist, or caregiver supporting someone with complex needs. Everyone has their own hard, and no family should have to carry it alone.

Jul 9

Episode 04 - Communication & Education: a Conversation with Susan Norwell and Kourtney Barnum

In Episode 4, we sit down with Susan Norwell and Kourtney Barnum from Rett University to explore the transformative world of Augmentative and Alternative Communication (AAC). As internationally recognized specialists in Rett syndrome, communication, and education for individuals with complex needs, Susan and Kourtney share their expertise on a wide range of topics, including AAC, eye gaze technology, low-tech and high-tech communication supports, literacy, classroom inclusion, and the importance of presuming competence. Together, we discuss what it truly means to give individuals the time, tools, and respect they need to communicate who they are at every age and every stage of life. Whether you're an educator, therapist, caregiver, sibling, or family member, this episode offers practical insights and encouragement for supporting meaningful communication. While our conversation is rooted in the Rett syndrome community, the principles extend far beyond—to autism, rare diseases, medical complexity, other disabilities, and even neurotypical children who benefit from additional communication support. At its heart, this episode is about access, dignity, inclusion, and ensuring every person has the opportunity to be heard.

Jun 21

Episode 03 - Au-Kline Syndrome: a Conversation with Dianne

Episode 3 features Dianne, mom to 8-year-old Dru, who lives with Au-Kline syndrome. We discuss the challenges of an ultra-rare diagnosis, navigating life with AAC, and the value of asking for help along the way.

Jun 21

Episode 02 - Rett Syndrome: a Conversation with Karen

Episode 2 features Karen, mom to 30-year-old Lynzie, who lives with Rett syndrome. We talk about the unique timing of Lynzie’s diagnosis, the challenges of making tough decisions in adulthood, and the importance of advocacy. Don’t miss this heartfelt conversation.

Trailer

Welcome to The Rare Remix

Bryan and Lindsey introduce The Rare Remix, share the story behind the podcast, and explain why they’re creating a space for real conversations, practical insight, and solutions for families navigating life with a new rhythm.

The Rare Remix

Episodes

Episode 10 - Finding a Way with Rett Syndrome: A Conversation with Sarah

Episode 09 - Down Syndrome Is the Least Interesting Thing About Her: Staci & Nate's Story

Episode 08 - What Physical Therapists Want Caregivers to Know

Episode 07 -Disability From A Kid’s Perspective

Episode 06 - From Sister to Caregiver: a Conversation with Tami and Donnie

Episode 05 - Rett Syndrome, Mobility & Caregiving: a Conversation with Allison and Brendan

Episode 04 - Communication & Education: a Conversation with Susan Norwell and Kourtney Barnum

Episode 03 - Au-Kline Syndrome: a Conversation with Dianne

Episode 02 - Rett Syndrome: a Conversation with Karen

Welcome to The Rare Remix

Trailer

Welcome to The Rare Remix

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