Overview

Raising a child with spina bifida doesn't end after the first year-it evolves. A Guide to Spina Bifida: Toddler to Primary School is a compassionate, practical, and deeply personal resource for parents navigating ages 2-4. Written by a mother living this journey, this book bridges the gap between early diagnosis and the transition into school, offering real-life insight alongside clear, step-by-step guidance. Inside, you'll find honest discussions about daily caregiving routines, catheterization and continence care, therapy decisions, burnout, and advocacy-paired with encouragement for parents learning how to balance complex medical needs with simply being a mom or dad. This guide walks you through PPEC enrollment, outpatient therapies, the IEP process, SSI applications, and working with specialists, all while acknowledging the emotional weight these years can carry. With local Duval County resources, national organizations, practical appendices, and lived experience woven throughout, this book is designed to be both a reference and a reassurance. You'll be reminded that progress looks different for every child-and that you are not alone in figuring it out. Whether you're preparing for school, adjusting therapy goals, or just trying to survive the day-to-day, this book offers clarity, connection, and confidence for the road ahead.

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