At Undivided, our mission is to help parents benefit from our collective knowledge — talking to experts and fellow parents and bringing that together — because so much of what families in the broader disability community discover is based on luck. We happen to meet someone in a waiting room who changes our life with their tips on the next steps to help our kids. When Kelley Coleman became a parent of a child with multiple disabilities, there was no manual with everything she needed to know, so she set out to write that manual in collaboration with expert parents as well as experts who are working in the field.
Kelley Coleman is an author and advocate who has spent over a decade navigating public benefits, insurance, and education. We were fortunate to sit down with Kelley to hear about her new book, Everything No One Tells You About Parenting a Disabled Child, and all of her advice for parents in advocating for what our kids need.
“I realized this is the book that I need to write,” Kelley says, “largely because I'm so passionate about equal access to information that we can understand and use and act upon. We're all just reinventing the same wheels, and I just feel so passionately that we can actually stop that. Give yourself a baseline of knowledge so that when you come to Undivided, when you come to a specialist’s office, when you are making that call to your insurance company, you are starting with enough knowledge to either know the system, or at the very least to answer to ask the right questions to get you there.”
If you’re tackling something especially dreaded, like insurance, educating yourself so that you know what questions to ask can empower you with confidence and help you get more done in less time. Listen to Kelley’s advice for how:
Whether it’s public benefits, private insurance, or the school system, Kelley emphasizes the power of connecting with other people to expand your knowledge:
“From state to state, even within California, what is happening in your school district or with your specific insurance plan or at your specific Regional Center varies from one to the next, and sometimes can vary greatly. So you need to connect with people, whether that's other parents, advocates, lawyers. When you find people within the systems you can trust, hold on to that person and get information that is correct and specific to your area. Because someone in a neighborhood 15 minutes away might have a different version of accessing the services. If you are fighting for things that are not being offered or not available to you, that is a fight that you can't win.”
There’s another reason for connecting with your community beyond equipping yourself with more knowledge: emotional support. Kelley says, “Know that if you feel like you're in a bottomless pit, you might be in a pit, but it is not bottomless. There will be so many people there. Maybe it's your neighbor, your pediatrician, maybe it's the head of your IEP team, who knows, but lots of friends, lots of fellow parents who will be a part of and will facilitate that journey saying, ‘Here's a hand. Let's do this together.’” One great place to start connecting with your community is Undivided’s Facebook group for parents, if you haven’t joined already!
Of course, telling our stories is only part of it. Kelley also emphasizes that parents of kids with disabilities need to spend more time listening to adults with disabilities, something that intimidated her when she was a new parents. She says, “Letting disabled people lead the conversation in advocacy is something that is so important to learn and internalize. Because what I have learned is that it's actually a shortcut to easier parenting for me. Isn't that nice when things get easier?”
She continues, “When you're actually talking to humans who are living the experience, you're getting real information, whether that's ‘Oh, you can do the feeding tube thing better than you're doing it right now.’ Or whether it is ‘You know what? Your kid is going to be just fine. And he will always have support needs, and his needs will be many. But he's gonna have a great life.’”
Kelley’s book contains this powerful statement:
Our hearts are rooted in the fact that we love our children. We're not trying to make them like anyone else. We're not trying to fix them, and our kids are not the problem. They need access, accessible solutions, accessible support, and accessible parks and classrooms and workplaces.
Kelley explains why this mindset is so important: “It's very clear that my child is actually not the problem. It is the lack of support, and the ridiculous amount of red tape and paperwork, and money and time, and all the things to get him the accommodations and supports that he needs. When he has things in place, he's great. He's his own version of himself. He will never be like the other members of my family in so many ways, and we're good with that. We need the world to catch up."
Kelley shared some words especially for parents who are new to the disability community: “There will always be days that are hard, that's never going to go away. Your days might be hard, they might be easy. However you are feeling now, that feeling isn't forever. You will feel better, which was the original title of this book, because that was what I needed to hear because I thought this awful feeling, which I now know was a feeling of total and complete inadequacy, the awful feeling will go away. I don't know when. But I do know how. It's the bridging between how you're feeling now and the future where it does feel better and doable and you have been joyful and celebratory. It's that you will fall in love with who your child is as a human being. The more that you get to know them and who they are, that is the thing that pulls you out of this.”
As parents, we feel the pressure of having to coordinate all the care our kids need. Kelley says, “Being a caregiver is a job in addition to parenting, for which there's no training. And for many of us, it is sudden and full time and forever.”
This journey as parent advocates is all about learning and growing together, so be kind to yourself. Kelley advises, “Remind yourself not to second guess yourself. And at the end of the day, instead of asking, which I've done way too many times, ‘Did I do enough?’ Say, ‘Did I do the best with the information that I had?’ There are certainly things I would go back and do differently now that I have different knowledge. But did I have this knowledge back then? Nope, sure didn't. Did I do the right thing with the knowledge I had? Yes.”
Kelley says that part of being kind to yourself can even look like the “boring stuff” like filling out paperwork or getting answers to your questions. “It feels so disempowering to feel like you can't control anything with your child, your life, your family's health, all of the things. But you know, what I can control is some of this boring stuff that actually gets my child the support they need, which in turn gets me the relief I need. And you know what? That is actually self-care. People say, ‘Go take a yoga class, go get a massage.’ For many of us, we need to check things off our list before we feel like we even have the mental capacity to go do those things.”
Thank you to Kelley for speaking so openly and passionately about her experiences as a parent and advocate, and for answering our questions! To see the full recording and transcript of this event, check out this page in our resource library.
Be sure to also check out Kelley’s book, Everything No One Tells You About Parenting a Disabled Child, which is packed with expert advice and parent stories. “My biggest goal with the book,” Kelley says, “is to equal the gap in access to information in a way that is understandable and we can use. All of our kids need equal access to all of the available services and supports. And if we are able to get there with our own kids, we need to help others get there as well.”
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