Everything No One Tells You About Parenting a Disabled Child : Your Guide to the Essential Systems, Services, and Supports

Enhanced descriptions from Syndetics:

The honest, relatable, actionable roadmap to the practicalities of parenting a disabled child, featuring personal stories, expert interviews, and the foundational information parents need to know about topics including diagnosis, school, doctors, insurance, financial planning, disability rights, and what life looks like as a parent caregiver.



For parents of disabled children, navigating the systems, services, and supports is a daunting, and often overwhelming, task. No one explains to parents how to figure out the complex medical, educational, and social service systems essential to their child's success. Over and over, parents are being asked to reinvent the exact same wheels.



According to the CDC, "Every 4 ½ minutes a baby is born with a birth defect in the United States." That's 1 in 33. There's no handbook for how to do this. Until now.



Presented with empathy and humor, Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports gives parents the tools to conquer the stuff , so that they can spend less time filling out forms, and more time loving their children exactly as they are. With over a decade of experience navigating these systems for her own child, author Kelley Coleman presents key information, templates, and wisdom alongside practical advice from over 40 experts, covering topics such as diagnosis, working with your medical team, insurance, financial planning, disability rights and advocacy, and individualized education plans. Everything No One Tells You About Parenting a Disabled Child gives parents the tools they need to stop wasting unnecessary time, money, and stress. If you need to know how to actually do the things, this book is for you.

Table of contents provided by Syndetics

• Introduction (1)
• Chapter 1 Everything No One Tells You About Getting Comfortable with Disability (11)
• Chapter 2 Everything No One Tells You About Diagnosis (21)
• Chapter 3 Everything No One Tells You About Working with Your Medical Team (33)
• Chapter 4 Everything No One Tells You About Therapies (49)
• Chapter 5 Everything No One Tells You About Insurance and Government Benefits (63)
• Chapter 6 Everything No One Tells You About Individualized Education Programs (IEPs) (81)
• Chapter 7 Everything No One Tells You About School (109)
• Chapter 8 Everything No One Tells You About Disability Rights and Advocacy (123)
• Chapter 9 Everything No One Tells You About Financial Planning and Future Care Plans (137)
• Chapter 10 Everything No One Tells You About Inclusion in Your Community (153)
• Chapter 11 Everything No One Tells You About What This Looks Like for You as a Parent Caregiver (169)
• Conclusion (187)
• Appendix (197)
• Acknowledgments (289)
• About the Author (291)

Reviews provided by Syndetics

Publishers Weekly Review

This helpful debut guide from Coleman draws on her experiences raising a son with an undiagnosed genetic syndrome (supporting diagnoses include autism, cerebral palsy, and intellectual disability) to offer advice on caring for children with disabilities. The guidance is largely structured in a q&a format. For instance, Coleman responds to the question, "Do I need a diagnosis?" by noting that while some parents believe labels are limiting, she finds that they "open up doors to therapies, services, allies, and insurance coverage." Elsewhere, she tackles how to coordinate care providers, navigate insurance and government benefits, choose the right education pathway, and afford care, explaining that tax-advantaged ABLE accounts can be used to pay for disability-related expenses and that a special needs trust can provide funds for a disabled individual without "affecting that person's eligibility for government benefits." Coleman's conversational and empathetic tone is a balm ("Remember when you had all those plans? Sigh," she writes on adjusting expectations after a child's diagnosis), and interviews with disability rights activists and medical professionals provide expert insight on, among other topics, the benefits of starting therapies early and the importance of working with educators on a child's education plan. Caregivers for children with disabilities will want to check this out. Photos. Agent: Laurel Symonds, Bent Agency. (Mar.)