Episode 34: Kim’s Life with LilyAnna (age 23)In our latest episode we welcome OG CDKL5 mama, Kim. She’s busy managing a large family in Arizona, which includes caregiving for her 23-year-old daughter, Lily, who lives with CDKL5 Deficiency Disorder. We talk all about the complexities Kim is navigating now that Lily is an adult, including lack of appropriate day programming, how adult medical care differs from pediatrics, and the ever-present challenge of finding respite care. Kim reflects on how caregiver advocacy doesn’t end when your child turns 18. The fight to ensure our children have what they need is an ongoing struggle, but we are powered by love to continue the fight. Thanks for joining us, Kim!

SHOW NOTES

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MENTIONED IN THE EPISODE:

Calm Amongst the Chaos - Kim’s Blog

CAC Family Support (Arizona)

Voice of the Patient Report: CDKL5

Article: AAC Systems for Communication

CDKL5 Mama Pilates on Instagram

Ryan House Respite in Arizona

Keifer Swim Collar

Gregory’s Swim Collar with Harness

RESOURCES:

Book: Comprehensive Literacy for All

Article: Essential Tips for Caregiver Lifting