Today we're talking with Haley Bennett, a mom of 4 whose younger two kids, ages 18 and 17, have profound autism, apraxia, mitochondrial issues, and several other complex health conditions. Haley shares how she found the Speller program after hearing about the book Underestimated, and how spelling to communicate opened up a whole new world for her non speaking children. We talk about apraxia, presuming competence, and why a child who cannot reliably communicate may know so much more than anyone realizes.
Haley also opens up about medical advocacy, diagnostic overshadowing, and how getting the right doctor finally uncovered serious health issues that had been dismissed as just autism for years. We dig into MedMAPS, a directory of clinicians who specialize in caring for kids and adults with complex special needs, along with their conferences for both clinicians and parents.
Haley also shares practical advice on getting benefits and services when you move states, why you have to be the squeaky wheel, and why trusting your gut as a parent matters more than you think. If you are a special needs parent or caregiver looking for real resources on communication devices, medical advocacy, or navigating benefits, this conversation is meant for you.
Links:
Haley Bennett's IG
Pediatrics Medical Courses, Workshops, CME Conferences- Med Maps
Spellers Freedom Foundation
MAPS for Parents facebook.com
