Valuable advice on parenting a disabled child shared in new book

For parents of disabled children, figuring out how to navigate services and support can be difficult. The book “Everything No One Tells You About Parenting a Disabled Child” is a roadmap offering guidance, stories, and support for parents about diagnosis, school, insurance, disability rights and parenting.

Author Kelley Coleman talks with Here & Now‘s Deepa Fernandes about the book.

Book excerpt: ‘Everything No One Tells You About Parenting a Disabled Child’

By Kelley Coleman

Introduction

Welcome. You never thought you’d be here, right? If you’re reading this, you’re likely the parent of a disabled child, and you’re feeling overwhelmed, exhausted, and just plain confused by all the stuff. That straightforward path you thought you were on? Yeah, you’re on a different path now. The old path doesn’t exist anymore. Same here. You’re not alone. You love your kid more than anything in the world. But the paperwork? Not so much…

From my own experience parenting two children, one of whom has multiple disabilities, I’ve learned that no one knows how to do this. When we find ourselves in the middle of it, we reinvent all the wheels. Every. Single. Time. We learn that, in the beginning of this journey, the best place to get real, practical information is often from other parents. And then we become the informed parents. Eventually. This book is your roadmap to becoming those parents: the ones who figure it out and get it done and celebrate the heck out of your child along the way. Whether you’re parenting a newly diagnosed infant or have been the caregiver of your adult child for years, this book is for you.

While I wish I had the magical solutions that would work for everyone, each region, family, child, and disability varies wildly. There are systems in place. But these systems are often one head‑ache after another. They can feel impossible. If only they had been created by and were run by the people they are serving.

In this book you’ll find the things that have worked for me. Many of them will work for you. If what I say doesn’t resonate with you, by all means ignore it. Systems, services, and supports are incredibly different from state to state, even under the same federal guidelines. And our children are even more unique. Disability will look different in each of our families. As it should. Every single child develops and grows differently. And your child’s path doesn’t make them any more or less than anyone else. I have one friend who is presently scheduling college tours for her child, who will be graduating high school with honors. I have another friend who spent the bulk of the past year in a hospital room with her child, who remained hospitalized for months for multiple surgeries and pain management. While both families are experiencing life with a disabled child, those experiences clearly impact life differently, even with amazing parents who love their kids passionately. My friend Jill recently described it by saying, “We are all in the same ocean, but in very different boats.” Some days I’m not sure what boat I’ll be getting into. They all float. I just have a hard time paddling some of them.

And the paddling looks different for me than it does for you. What do I mean by that? I mean that we all bring our own life experience to our parenting and to how we navigate the waters. Added to that is the very real bias that many families face, not only against people with disabilities, but also bias based on race, education, income, and many more factors. Bias too often impacts the ability to access necessary supports and services. For example, a 2021 report from the California Department of Developmental Services showed that Latino clients receive, on average, 41 cents of Regional Center funding for every dollar spent on white clients. The US Department of Education Office of Special Education and Rehabilitative Services states on their website, “Black or African American students with disabilities are more likely to be identified with intellectual disability or emotional disturbance than all students with disabilities and more likely to receive a disciplinary removal than all students with disabilities.” In my conversation with SpEducational executive director and founder LisaMosko Barros, she cited her own clients whose disabilities have gone undiagnosed and unaddressed due to evaluators incorrectly assuming learning deficits were due to a child’s culture or the language spoken in the child’s home rather than a very real disability. Mosko Barros also spoke of the privilege of who can afford independent evaluations, second opinions, extra therapies, lawyers, and to live within the boundaries of a well-resourced school. She acknowledges that families can sometimes figure this out, but that it can be a challenge. “If you don’t have the education, you need time,” she said. “And time is a privilege.” In my own family,I have seen the privilege of time work to my child’s advantage. I have been able to take the time learn, to figure out, and to make things happen so that my child receives the supports he needs. Added to that, I acknowledge that I have other privileges including race, education, income security, and a network of supportive friends and family. And all of this is still really hard for me. It’s hard every single day. Is loving my child hard? Nope, never. But all this paperwork? Yeah, it sucks. My aim with this book is to save others much of the time, money, and stress that I wasted learning this stuff. I hope to give others information they can use to both support their children and to confront the bias they will face along the way. We’re not all in the same boat. Let’s help each other paddle. For the sake of all of our kids.

This book isn’t about offering one perfect solution. Disability isn’t a problem to solve. The problem we need to solve is the lack of sufficient, accessible support. For everyone. This book is not intended as medical or legal advice, as I am neither a doctor nor a lawyer. It’s a guide to the basics, so you can ask better questions, get better answers, and find better solutions—with your child as involved as possible in the decisions that will impact their life. Think of this book as a much‑needed You Are Here on the map of your new life. Where you go from here is up to you. My child has a rare, undiagnosed genetic syndrome. Odds are our kids are very different—and also have many similarities. Just like all of us parents. As a fellow parent, I don’t know what your child needs. But I do know what you need: information you can understand and use. I’m not here to help your child. I’m here to help you

Excerpted with permission of the publisher.

This article was originally published on WBUR.org.