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.

For many families, the start of a new school year is filled with excitement. Fresh school supplies, new teachers, and the promise of new friendships make it a season of anticipation.

For families of children with Rett syndrome, however, back-to-school often brings a very different set of emotions and challenges.

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Social games can be a great way for an eye gaze user to engage with their peers. All it takes is a little creativity and the willingness to do things a little different.

In Episode 3, Dianne shares how her daughter Dru’s ultra-rare Au-Kline syndrome diagnosis led their family to community, advocacy, early specialist care, and AAC, reminding us that rare families often learn, adapt, and advocate together.

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.

From Medicaid maps to insurance appeals, appointment follow-up and planning for the future, we use AI to make complicated work more manageable—without handing over human decisions.