What do physical therapists want caregivers to know? We unpack this topic and discuss caregiver care, safe transfers, equipment, and how the whole care team can work together.

Resources to talk with children about disability

In Episode 6, we sat down with Tami and Donnie, who recently became guardians and primary caregivers for Tami's youngest sister, Lori. Lori has Rett syndrome and recently celebrated her 58th birthday.

Their conversation gave us a rare look at sibling caregiving across an entire lifetime - from growing up together, to helping aging parents, to planning the transfer of guardianship, to building a new daily life after the passing of a longtime parent caregiver.

In Episode 5, Allison and Brendan share about their life with their daughters, Anya and Clare. Clare was diagnosed with Rett syndrome just as the world shut down in 2020 for COVID. From the less-visible demands of raising a mobile child with complex needs to Allison's powerful distinction between “momming” and caregiving, their story reminds us that everyone has their own version of hard.

In Episode 2 of The Rare Remix Podcast, we were joined by Karen, a single parent of three: 15-year-old twins Christian and Caden, and 30-year-old Lynzie, who has Rett syndrome.

Rett syndrome is a rare neurodevelopmental disorder that can cause developmental regression, loss of spoken language, motor impairments, and reduced functional hand use. Abilities and support needs vary, but many people with Rett syndrome require significant assistance with everyday activities.