Episode 46: Let’s Talk About Respite

<p><strong>Episode 46: Let’s Talk About Respite</strong></p><p>It’s the number one unmet need that #CDKL5 caregivers have mentioned on our show, and we know exactly why. When your child needs 24/7, specialized care, it’s not easy to do it on your own, and it’s even harder to find someone else who you can trust to meet your child’s needs. Medication management, lifting and positioning, behavior management, seizure safety, specialized feeding needs, and more - it takes a special person to fill the caregiving role for our kids. In this episode, we talk about what respite is (and what it’s not) and how we’ve navigated respite in our own lives. We also offer suggestions to families for finding and funding respite.</p><p><strong>SHOW NOTES</strong></p><p>Check out our website and sign up for our quarterly newsletter at <a href="http://www.cdkl5incolor.com"><strong>www.CDKL5inColor.com</strong></a></p><p>Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, &amp; YouTube!</p><p>Email us to be on the show! <a href="mailto:CDKL5inColor@gmail.com"><u>CDKL5inColor@gmail.com</u></a></p><p>Thank you to our 2026 Airwave Ally Sponsor - <a href="https://www.ucb-usa.com/Patients"><u>UCB Pharma</u></a>!</p><p><strong>LINKS:</strong></p><p><a href="https://rarediseases.org/patient-assistance-programs-old/caregiver-respite/"><strong>NORD’s Caregiver Respite Fund</strong></a></p><p><a href="https://grants.supportnow.org/"><strong>Connect by Support Now - Grant Finder Free Tool</strong></a></p><p><a href="https://nashp.org/state-medicaid-approaches-to-respite-care-for-children-and-youth-with-chronic-and-complex-needs/"><strong>Article: State Medicaid Approaches to Respite Care for Children and Youth with Chronic and Complex Needs</strong></a></p><p><a href="https://publications.aap.org/pediatrics/article/155/6/e2024070217/201872/Pediatric-Respite-Homes-A-Call-to-Action?autologincheck=redirected"><strong>Publication - Pediatric Respite Homes: A Call to Action</strong></a></p><p><a href="https://www.rewardingwork.org/respite-provider-screening-questions"><strong>Respite Provider Screening Questions</strong></a></p><p><a href="https://ryanhouse.org/"><strong>Ryan House in Arizona</strong></a></p><p><a href="https://childrensrespitehomes.org/"><strong>Respite Homes in the US</strong></a></p><p><a href="https://www.childneurologyfoundation.org/respite-care/"><strong>Get To Know My Child - Respite Care Notebook (fillable)</strong></a></p>