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

by Kelley Coleman

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 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.

Genres: Parenting, Disability, Nonfiction

304 pages, Paperback

Published March 12, 2024

About the author

Kelley Coleman is a feature film development executive turned author and advocate for parent caregivers and individuals with disabilities. Her book Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports draws upon over a decade of experience, including her own experience parenting a child with multiple disabilities. Kelley lives in Los Angeles with her husband, two boys, and her son’s trusty service dog.

Reviews

[Sarah · Rating 5 out of 5]

As a coach, yoga therapist, and caregiver to a disabled young adult with Down syndrome and autism (she prefers People First identifying language so I’m honoring my kid), I sincerely hope someone likes you enough to gift or recommend Kelley Coleman’s book: Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports. Nearly 18 years ago I birthed a baby with complex medical conditions with some scary near death hospitalizations. I was a postpartum depressed, sleep deprived, and overwhelmed parent who was both deeply in love with my kid and also in a huge disorienting fog where I didn’t know what to do or where to go. I wish that this book would have been around then- but it’s here and will save folks hours of worry and stress, and many tears. This book will also give the precious gift of sleep because it is so handy and detailed with great experts, including disabled advocates and other thoughtful professionals who share insights and guidance that is spot on. There’s also the important measures of humor sprinkled throughout to help manage that anxiety that parents get when we say, figured out one thing but were then greeted promptly with a totally different and new thing to learn about, seek out professional help for, and all the while trying to figure how to fund it and schedule it. I was especially cracking up here: “I don’t want to think about when I die. That’s depressing. -Statistically speaking, you have a 100 percent chance of dying. Me too. Let’s figure this out” (Page 141). Use her book as a reference or overachieve and read it straight through- it’s a good book to have both as an e-book for that 4am reading light that won’t wake the kid up who isn’t sleeping well or without you nearby, and as a paper copy to give to that new parent you meet who is cool and drowning (and a copy for your parent support group lending library). Thanks Kelley- my only regret is you didn’t write this for me in 2006, but I won’t take stars away for that. Note: I received an advanced reader copy in e-book and paper back so for this review, I get the e-book forever and the awesome opportunity to share this in our parent support group lending library. I only write reviews for good books that I will buy for friends so this is definitely making my list.

[Laura Chouinard · Rating 5 out of 5]

When our son received a diagnosis of Autism Spectrum Disorder, we were given a brief 10-page packet outlining basic guidelines for care and services. It's baffling how any agency could believe that such a small packet could help us comprehend and navigate the lifelong impact of our son's diagnosis. As Coleman aptly states towards the end of this book, "Parenting a disabled child isn't a destination or a game you win by playing your cards right. It's an evolving journey. It's educating yourself. It's celebrating every victory." She is absolutely right. This journey demands constant advocacy from parents, but how can one effectively advocate without the necessary tools and education? Enter Coleman's guidebook. While not a solution to every problem or specific to every disability, it provides a well-thought-out general understanding of the underlying issues of raising a child with a disability, sprinkled with some much-needed humor for thriving as a caregiver and mother.

After reading a UK-based publication on a similar topic, I found the information useful but kept thinking about how it would be extremely beneficial if it were tailored to the US healthcare and education system. Enter Coleman's book once again.

I wholeheartedly recommend this book to anyone on the caregiving journey. Coleman not only shares her personal insights but also provides a wealth of resources and templates.

I wish I had received or been recommended this book during the first week after our son's diagnosis—a week when I felt like the world I knew had been destroyed. If I had had her book, I would have quickly learned that it wasn't destroyed; I was just in a new world that required time to understand. Most importantly, I would have realized that I wasn't alone, and other moms and dads had been on this journey long before me, finding ways to thrive.

Thank you to Book Publicity Services for an advanced copy of this publication.

To follow along my own personal journey please check out Mothering Through Disabilities: an Unexpected Journey on Facebook and MotheringThroughDisabilities on Instagram.

[Chardell · Rating 5 out of 5]

Wish I had this book when my disabled child was little! It's a wealth of knowledge; an incredible resource, especially if you're a newly diagnosed family.

Feels like a conversation with a good friend. One who doesn't judge, gives GREAT advice and will leave you feeling empowered.

Even if you feel confident taking care of your child, there is a lot of good advice in here. And the parent letters were SO relatable.

[Amanda Owen · Rating 5 out of 5]

"Everything No One Tells You About Parenting A Disabled Child" by Kelley Coleman is a comprehensive and invaluable guide that every professional in the field should have in their toolkit. This book is a lifeline for parents entering the challenging world of raising a child with disabilities, providing a much-needed beacon of light in the initial stages of confusion and uncertainty. Coleman's work is jam-packed with practical "how-to" advice and serves as a comprehensive starting point for those grappling with a recent diagnosis. As someone deeply immersed in supporting families of children with disabilities, I find this book to be an indispensable resource, offering a clear roadmap and answering the myriad questions parents may have in one centralized place. It is truly a game-changer, providing the guidance needed to navigate the complex journey of parenting a child with special needs.

[Nick · Rating 5 out of 5]

"Everything No One Tells You About Parenting a Disabled Child" is a hidden gem that has become my go-to guide for navigating the complexities of raising autistic toddlers. It offers invaluable insights for preparing for IEPs, navigating the services & benefits game, and more. This is the essential playbook I wish I had from the start. The author's blend of personal experience and practical advice resonates deeply, making complex topics accessible and manageable. This book is not just informative but also a source of comfort and community for parents on a similar journey. I highly recommend it to any parent facing the unique challenges of raising a disabled child.

[Dinalynn Rosenbush · Rating 5 out of 5]

This book is a valuable resource for the parents of kids with disabilities! I am so pleased that Kelley Coleman has stepped into the world to tell what she learned. Many families will be helped and supported through this gift to the world. Thank you!! Thank you!! ~Dinalynn Rosenbush

[Heather · Rating 5 out of 5]

Brilliant, validating and humorous at times! Wonderful resource for parents with a new diagnosis or those of us navigating many diagnoses at once. I wish I would have read this earlier :)

[Kelli McIntosh · Rating 5 out of 5]

The introduction of this book pulled me in immediately and spoke to my heart.  Even though I have been parenting a child with multiple disabilities for nearly 18 years and have already learned quite a bit as a result, I still learned some new things to consider and ideas to revisit as my son reaches adulthood.  My thoughts and feelings about parenting a child with disabilities were validated as I read and I often thought about how I wished I had this book at the start of my journey with my son.  I highly recommend this book as a roadmap if you’re parenting a child with any type of disability. 

[Katie · Rating 5 out of 5]

I have to admit, I was skeptical of this book based on the title. A single book can't tell me everything, can it? Well, yes. And no. The author shares what worked for her, but also brings in experts to talk about things that might not have been her experience.

I am a Disabled parent of a Disabled child. This book is really relatable, even thought my child is not disabled in the same way as the author's. I found the style of writing to be really approachable, and appreciated the author's sense of humor. I also appreciated the various templates and scripts/examples.

Several times while reading this book, I called my friend who is also a Disabled parent of a Disabled child to talk about topics/ideas covered in this book.

Thanks to NetGalley for a copy of this book.

[Whitney Stohr · Rating 5 out of 5]

I LOVED this book! It is a refreshing glimpse into the world of parenting a Disabled child.

It offers a pragmatic perspective and honest guide for those entering the world of parenting when that parenting journey will inevitably look a little different than anticipated.

From Diagnosis Day, IEPs, future planning, navigating insurance challenges, and everything in between -- this book covers it all!

Readers will walk away with actionable steps and advice from both parent peers and disability service providers and community organizations, as well as handy templates of documents and communications to help along the way.

The personal accounts from other parents of children with disabilities, sprinkled throughout the book, offer a heartwarming and equally intimate glimpse into the lives and emotions of those walking (or rolling) down a similar road of experience.

I wish this book had been available when I was first starting out!

Thank you, Kelley, for sharing your knowledge and experience with the rest of us.

[Cindi · Rating 5 out of 5]

This is a book that every parent, especially those just starting out, should read. I wish I had this early on—it’s a real game-changer.

Kelley Coleman’s “Everything No One Tells You About Parenting a Disabled Child” feels like having a heart-to-heart with a friend who truly understands. As a mom herself, Coleman shares personal stories and practical advice that make you feel seen and supported.

She covers everything from the initial diagnosis to dealing with doctors and finding support. Her tips and insights are both helpful and comforting.

What I love most is how Coleman shares her own ups and downs. Her stories make you feel like you’re not alone on this journey. She gives you hope and practical advice you can use every day.

As Coleman beautifully puts it, “we are all in the same ocean, but in very different boats.” This book really helped me, even after 12 years into this journey. It’s a fantastic guide for any parent or caregiver, making the tough times a bit easier to navigate.

[Tristina Pontiakos · Rating 5 out of 5]

Honestly this book is amazing. It should absolutely be mandatory reading for every parent receiving a disability diagnosis for their child. It was thoughtful, funny, insightful, and so meaningful. I cried multiple times because I was sure Kelley Coleman was reading my thoughts. Was every answer to disability services and supports included? Of course not. The book would be a million pages long if so because it’s so dependent on your situation. It did, however, give an excellent starting point for most everything you will encounter on this journey. Thank you so much for this book, I will certainly be sharing!

[David · Rating 5 out of 5]

If you have a disabled kid this book will connect with you. If you want to better understand the challenges parents of disabled kids face this book will show you.

[Julie H · Rating 5 out of 5]

This would have been helpful 7 years ago, actually more like 5 or 6. It has a ton of information which might be overwhelming right after birth. If you got a diagnosis later, months after birth, this would be so helpful to hang out with the diagnosis. Well written. Lots of good actionable advice in the right bite sized amounts.

[Heather Hall · Rating 5 out of 5]

"Everything No One Tells You About Parenting a Disabled Child" is a commendable contribution to the literature of special education and disability parenting. Kelley Coleman demonstrates a remarkable grasp of the multifaceted challenges inherent in raising a child with disabilities, complemented by a compelling blend of warmth, humor, and practical advice.

Coleman adeptly deconstructs the intricate web of systems encompassing medical, educational, legal, and social support, rendering them comprehensible even to guardians grappling with overwhelming circumstances. Her methodical approach ensures that essential information is presented in a digestible manner, fostering accessibility and empowering caregivers to navigate these complex realms with greater confidence and efficacy.

Of particular significance are the poignant parent letters addressed to their future selves, which offer firsthand testimonies illuminating the nuanced realities of parenting a child with disabilities within an ableist societal framework. These personal narratives serve as poignant reminders of the resilience, triumphs, and ongoing struggles inherent in this journey, enriching the reader's understanding with invaluable perspectives drawn from lived experiences.

In summary, "Everything No One Tells You About Parenting a Disabled Child" emerges as a commendable resource for educators, caregivers, and professionals within the realm of special education. Coleman's adept synthesis of practical guidance, empathetic insights, and firsthand narratives renders this book an indispensable asset in fostering greater understanding, support, and advocacy for individuals navigating the complex terrain of disability parenting.

[Maggie Bogdan · Rating 3 out of 5]

I was given a pre-sale copy of this book for free to review by Kelsey, from Book Publicly Services.

As a mother of a disabled child (diagnosis 2021) this is exactly the kind of book I would have thought would have helped so much. Unfortunately, I truly feel it missed the mark. I spent the entire year following my son's diagnosis reading about the ins and outs. I anticipated this one to fill in the gaps, and to be "the book I wish I had", but I didn't feel that way.

The tone of the book is flippant. It was a massive turn off. The author's writing style and anecdotes of her son's experience, ends up coming off like a huge chip on her shoulder and I grimaced many times throughout the book. I even read sections out loud to my husband to check that it wasn't just a personal bias. We both thought many of the comedic threads were harsh and uncalled for.

I also feel that each chapter was designed to give deep information on topics rarely discussed (insurance, therapy etc) but because the scope of the book is so large, there is no way the information could be anything but general and mostly unhelpful.

I did appreciate many of the forms and lists. These were not something I'd seen before.

It's obvious the author has a lot to share, I just don't think the book came off as supportive or as helpful as it was most likely intended.

In addition, the author's son has a service dog that she mentioned several times, but nowhere in the book did it mention the requirements for having a service dog or for how to get one.

[Kelly {SpaceOnTheBookcase] · Rating 4 out of 5]

I think it is really hard to tackle the subject of parenting a disabled child because the word disability applies across a spectrum and access to resources is specific to location, health insurance and cost, yet I really enjoyed Kelley Coleman's brutal honesty in recognizing why there is no one size fits all method. My youngest daughter has autism; she wasn't diagnosed at a time where they assigned levels but if she had, it would be level 1. She is verbal and has been schooled with her neurotypical peers her whole life. From the outside she often doesn't appear disabled and yet she is, and when those quirks rear their ugly head, it's like a slap in the face.

This guide doesn't have all the answers, but it does offer a lot of valuable insight into how your life changes when your child isn't typical. I would recommend it to all parents, but also those who are considering a family in the future. I remind people all the time that while we all wish for a happy and healthy baby, that isn't always what happens and that will change your life forever.

Thank you Hachette Go for the gifted copy to review.

[Joanne De · Rating 4 out of 5]

I received a pre-sale copy of this book from Book Publicity Services.

As a parent/caregiver for the past 25 years, I can comfortably say that one book can’t tell you everything you need to know about parenting a disabled child, but this book gives you more than a good head start. Parents feeling lost in the world of disability parenting will gain valuable insight and a finger pointing in the right direction. In addition to being the reader’s cheerleader (often reminding you that you can accomplish all that needs to be done), the author has filled this book with personal and expert insights, useful templates, an appendix filled with extended interviews, and a plethora of resources.

As a parent advocate, I love that Coleman gives parents a list of questions to ask in each chapter. Again, it’s a starting point that will help you brainstorm additional questions that need to be asked. I particularly appreciated the interview with the late Judy Heumann.

[Jessi · Rating 5 out of 5]

This book is great for parents of newly-diagnosed children, as and honestly even for those seasoned with experience in this area. I wish I had this guide a decade ago when both of my children received their autism diagnosis. I really appreciate the refreshing perspective of supporting over “curing.” This is a disability-affirming book. I love the non-ableist language used which is still rare even now in 2024 to read from “experts.” Hearing from medical experts is of course a part of the whole balance, but I will also place the highest value first & foremost on what actual disabled people have to say (which is what this author does) followed by the parents & caregivers that actually have lived this life of 24/7 support to our disabled loved ones. This was very well-done!

[Mosko-Freund · Rating 5 out of 5]

What a gift this book is! Kelley expertly guides you through the trials and tribulations of raising a child with disabilities with warmth, humor and some seriously useful tips. She breaks down all of the intersecting systems of care (medical, educational, legal, etc.) in a way that is easy for even the most overwhelmed parent to absorb and her interviews with experts in various disciplines surrounding disability are incredibly informative and insightful. Especially poignant are the parent letters to their future selves, giving first hand testimony to what it means to raise a child with a disability in an ableist world. I wish I had this book in hand when I began my own journey as a parent fifteen years ago and am thrilled for all the guardians who will benefit from it now.

[Kea4 · Rating 2 out of 5]

It’s a book with a lot of info. Some good others not so much.
Such as getting him a service dog.

The photos are nice but just admit they are your kids.
Also mention the diagnosis at the start. I felt it was too late to be talked about.

Why not mention DPNA which stands for “Disabled Passenger with Intellectual or Developmental Disability Needing Assistance“. The code communicates to the airline that the passenger will require assistance or special preferences during their travels. On-line reservations should have a box where you can check the DPNA code box

What about siblings that feel abandoned because everything revolves around the disabled child?

There is a lot but the motivation letters did nothing for me. Also what about taking time for yourself!

[Tabby Shiflett · Rating 4 out of 5]

A good starting point for parents/caregivers who have just learned that their child has been diagnosed with a disability, this guide outlines many questions, strategies, and potential suggestions that you'll want to reread too, especially every few years. I wish there would have been more info regarding 504 and IEP plans and funding and insurance, but there's a lot of useful links, personal stories, and templates to make this book worthwhile.

Thank you for writing this book, its a topic that is underrepresented in the published world!

LibraryThing Early Reviewer

[Teresa Unnerstall · Rating 5 out of 5]

Kelley Coleman has written an excellent guide to help parents and anyone else working with a disabled child. The chapters cover a variety of topics about parenting, IEP's, therapies, future planning and much more. The book is filled with perspectives from professionals in the field and parents on this jouney. As a parent to a son with co-occurring DS-ASD, I highly recommend this book as a go to guide for navigating the complicated maze of raising a child with a disabliity.

[Cristin · Rating 5 out of 5]

As a mom to a young man with Down syndrome, this is the book I wish I had when he was born. Kelley Coleman is part guide, part best friend as she takes you through all the topics you deal with as a caregiver of a disabled child. The way she presents her own perspective as well as experts in the field with templates to make life easier is so helpful. Grab this book if you’re in the early stages of parenting a child with a disability.

[Robin Perkins · Rating 5 out of 5]

I received this book as part of a Goodreads giveaway.

I was pleasantly surprised by this book. I was expecting something fairly dry and clinical and instead found an informative and "real life" book. The author is able to put together interviews with people from all aspects of disabled child rearing. Of course there are parents, but also professionals, and even disabled adults who have been through the system. In this way you get a fuller picture of what can help you.

[Larkin Simpson · Rating 5 out of 5]

This book has such a vast possibilities for whom will read it and what they will take away from it. I really appreciated the lists and templates in this book. I also liked how Kelley noted "What worked for her," implying that it may not work for everyone. In this life, with so many systems at play with our kids who have disabilities it is all so valuable.

[Jenni Frisby · Rating 3 out of 5]

The book was good, but would have been way more helpful if I had it when my daughter was first born. Since I’ve been at this over 9 years now, I kind of have the basics down and that’s pretty much what she covers in the book. There were a couple chapters that were more helpful and the appendix had more information on certain subjects.

[Sara Hrkach · Rating 5 out of 5]

This book is organized beautifully, not to mention the wealth of stories & information shared. I loved how it cut right to the point - each chapter has interviews with experts that the author summaries into 3-4 bullet points, and then provides the full conversations at the end of the book for reference. Thank you, thank you! ⭐️⭐️⭐️⭐️⭐️

[Ava Elizabeth, MS, LLP · Rating 5 out of 5]

One of the literal best books I have read throughout the course of my education and career so far. Everyone should read this book whether you are a parent and/or caregiver, healthcare worker, family member of a person with a disability, or member of society in general. Highly recommend.

[Roxanne · Rating 3 out of 5]

The tone of the writing was a little off for me.

I won a copy from Goodreads.