Valuable advice on raising a disabled child, shared in a new book

While I wish I had the magic solutions that would work for everyone, every region, every family, every child, and every disability varies greatly. There are systems in place. But these systems often cause one headache after another. They can feel impossible. If only they were created and led by the people they serve.

In this book you will find the things that worked for me. Many of them will work for you. If what I say doesn’t appeal to you, by all means ignore it. Systems, services, and support vary incredibly 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 be. Every child develops and grows differently. And your child’s path does not make him more or less than anyone else. I have a friend who is currently planning field trips for her child, who will graduate high school with honors. I have another friend who has spent most of the past year in a hospital room with her child, who has been in the hospital for months for multiple surgeries and pain management. Although both families experience life with a disabled child, those experiences clearly impact lives differently, even with wonderful parents who love their children 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 which boat I’m getting into. They all float. I just have trouble paddling some of them.

And 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 experiences to our parenting and how we navigate the waters. Add to that the very real biases that many families face, not only toward people with disabilities, but also biases based on race, education, income, and many more factors. Too often, bias impacts the ability to access necessary supports and services. For example, a 2021 report from the California Department of Developmental Services found that Latino clients receive an average of 41 cents in regional center funding for every dollar spent on white clients. The U.S. Department of Education’s 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 an intellectual disability or emotional disturbance than all students with disabilities and are more likely to a disciplinary expulsion. than all students with disabilities.” In my conversation with SpEducational Executive Director and Founder LisaMosko Barros, she mentioned her own clients whose disabilities went undiagnosed and unaddressed because evaluators wrongly assumed that learning gaps were due to a child’s culture or the language used in the home. of the child, instead of a very real problem. incompetence. Mosko Barros also spoke about the privilege of being able to afford independent evaluations, second opinions, additional therapies, lawyers and living within the confines of a well-equipped school. She acknowledges that sometimes families can figure this out, but it can be a challenge. “If you don’t have the training, 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’ve been able to take the time to learn, figure it out, and make things happen so that my child gets the support he needs. Additionally, I recognize that I have other privileges, including race, education, income security, and a network of supportive friends and family. And all this is still very difficult for me. It’s hard every day. Is it difficult to love my child? No, never. But all that paperwork? Yes, it sucks. My goal with this book is to save others much of the time, money, and stress I wasted learning this stuff. I hope to give others information they can use to support their children and confront the biases they will face along the way. We are not all in the same boat. Let’s help each other paddle. For the sake of all our children.

This book is not about offering one perfect solution. Disability is not a problem that needs to be solved. 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 not a doctor or lawyer. It’s a guide to the basics so you can ask better questions, get better answers, and find better solutions, keeping your child as involved as possible in the decisions that affect their lives. Consider this book 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. Chances are that our children 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

Reprinted with permission of the publisher.