Kelley Coleman on Everything No One Tells You About Parenting a Disabled Child

Debbie:

Hello, Kelley, welcome to the podcast.

Kelley Coleman:

Thank you so much for having me and for all that you have created. I love that our worlds have crossed in this like reframe, everything and we actually can support our kids and each other all at the same time. I just, I love that.

Debbie:

Well, thank you. Yeah, I’m so glad. And we have a mutual friend who helped facilitate our connecting in real life, which is great. Shout out to Claire. And yeah, I’m always so inspired when I connect with other humans, other parents, other moms who kind of embraced the pivot and leaned all the way in, which is certainly what you’ve done. So I wanna talk about your new book and kind of this mission that you’re on that’s kind of really taking off. And before we do that, beyond the bio, could you give us a little bit of your story and just so listeners have some context for how you came to be doing this work.

Kelley Coleman:

Absolutely. So my previous career was very creative. And so it’s not an accident that I am writing books and writing things that have humor and conversational tone and all of that. However, coming into the disability world was a totally new and unexpected experience for me. I have two amazing kids. They’re 12 years old and 10 years old. And our 10 year old has multiple disabilities, including a yet undiagnosed genetic syndrome. And within that, sub diagnosis of autism, epilepsy, cortical vision impairment, cerebral palsy, microcephaly, fine motor, gross motor, cognitive, behavioral, medical. Like he’s just checking all the boxes because he’s an overachiever and that’s what he does. And my kids are amazing. They’re great. And even within that, we started on our disability journey when he was an infant, and the path to where we are now, I made it so much harder on myself than it really needed to be. And I think so many of us do that without realizing it. And now, a decade in, really realizing and wanting to fundamentally change how parents enter into this world of being a parent caregiver and looking at the caregiving piece. Caregiving is a job. It is a job in addition to parenting. For many of us like me, it is unexpected, it is sudden, it is full-time, and it is forever, and no one is teaching us how to do the stuff. And we just want to love our kids. We don’t want to do paperwork all day. And some days I’m doing paperwork all day. And I really came to this book from this place of we are all reinventing the exact same wheels and we’re figuring out how to call our insurance company, what questions to ask the specialist, how to even find that specialist, how to do a future care plan or a financial plan for a kid who might never be fully independent. And nobody knows this stuff, but if we can get the foundational information and real information, I source over 40 experts, and have the templates and the checklists and the stuff, this can be on-the-job training for the job of being a caregiver so that we’re not all just floundering and lost and overwhelmed in all of the paperwork and the planning and the stuff, so that we can actually put the job of caregiving into its place so that we can breathe and exist as people and as parents who do just want to go to the park with our kids and in whatever form that takes. And for us, it looks very different than for many families. But getting a handle on all of the stuff that we have to do, whether we like it or not, has allowed our family to function better, has allowed my son to get the supports and the services he needs, and has allowed me to be a person and be a parent in a way that I just wasn’t for years.

Debbie:

Yeah, and I just have to even say before we go deeper, you know, maybe kind of just acknowledging my own ignorance here, that definition of caregiving, I, you know, I write a lot and talk about parents and caregivers. And in my mind, caregivers are maybe not biological parents, but other people who are taking care of our children. But I never thought about the distinction of being a parent and a caregiver.

Kelley Coleman:

That is a recent light bulb over my own head that I realized we are parents and we are caregivers. There is so much overlap. And that reframe for me also helps me put into perspective and talk about with my kids and with others. There are things that are hard about disability. It’s not who my child is as a human that is hard. He’s amazing and he is just loving life and it is his world and we’re all just living in it. But it’s okay to talk about the hard of the systems and the stuff that is part of the caregiving experience. That’s a job. And sometimes that job is exhausting and overwhelming and we need to be able to talk about that.

Because if all we ever say is parenting a disabled child is the best always, then that’s a lie. Epilepsy is not the best in our house. IEP meetings are not the best in our house. But it allows us to acknowledge the fullness of our experience. And I am a person who is not disabled entering the disability community as an ally because of and by way of my son who experiences disability firsthand. And that doesn’t mean I need to erase my own experience in order to center his firsthand experience. It means I am following and listening to disabled leaders. And it means I am defining my experience as a caregiver of someone with support needs. And I can’t validate myself without erasing my own experience within that.

Debbie:

Yeah, it’s such an important distinction. And I think it’s, I can just imagine, you know, when people find your work and find your book, how just comforting it is to be like, oh, it’s, you know, all these feelings I have are valid and I and I, there is a way for me to show up in this, which is acknowledging and honoring what I’m experiencing and not taking away from what my child’s experiencing as well. I want to go back to something you said when you were first introducing yourself and telling your story. You said you made it so much harder on yourself for so many years. And I wonder if you could just share with us some of the ways in which you made it harder on yourself. What did that look like?

Kelley Coleman:

So, I was making it so much harder on myself because I had decided in my head what disability was and would be and how it would show up for my child and myself and my family and the world based on nothing. Based on no real life experience with actual disabled individuals. It was sourcing the ignorance that so many of us grew up with, including me, that is very ableist and not confronting my own bias and ableism, which is there and is there for everybody, can’t even be there for people with disabilities, of we were taught like, don’t stare, don’t look, don’t acknowledge, pretend you don’t notice that lady in the wheelchair. You know what? Like, you notice the wheelchair next to you.

And you also notice there’s a human next to you. And I was just creating all this like awful doomsday scenarios in my head, whether it was about my son’s medical needs, for example, the epilepsy, the feeding tube, other medical things, which can be hard, but even more so just projecting, oh, this is going to be terrible because he’s disabled. And I wish the me back then I’m going to cry here. Could have known and seen my kid ten years in, who he is now, and is it easy? No. Is a lot of parenting hard? Yes. For any child of any sort. He is this happy, hilarious, wonderful ten-year-old who contributes so much to the world. He’s not an inspiration, he’s not a superhero. Like he’s a 10 year old dude. That’s a lot of pressure to put on anyone, much less a 10 year old. But if I had from the beginning even followed online, disabled individuals, organizations that support disability, I would have and had connected with other families who are experiencing the same caregiving life, it would have been such a shortcut to the, oh, like we’re good, that I feel now. And so many of us do isolate because this is isolating, because it’s taking us out of our expectations, not our dreams for our kids, but just our expectations we all seem to come up with, all get blown out of the water in whatever form and just connecting with disabled people and connecting with other families and communities would have gotten me out of that feeling like I am just falling down a bottomless pit and this is never gonna get better. Way sooner, the pit is not bottomless. There’s bottom, you’ll hit it, and then you’ll climb out, eventually.

Debbie:

So how did you then find your way? Because I don’t think it’s modeled for us. And the parents I talk to here at Tilt Parenting and the neurodivergent space, it’s like we don’t know what we don’t know. And then depending on who we get the information from, we might get prescribed or suggested these or that interventions. But it isn’t very often that we’re told you should follow, learn from neurodivergent adults, disabled adults, you know, that isn’t kind of what is suggested for us. And so I’m just wondering, what was it for, for you? Or what did it look like for you to kind of have this kind of this, this realization like, oh, I, you know, this isn’t a bottomless pit, I need to do x in order to start kind of figuring this out.

Kelley Coleman:

So first of all, this is not a destination that any of us will magically reach. Those of us who are being allies and genuinely supporting our kids and others with first-hand disabilities, we don’t magically wake up one day and we’re good! We’ve checked that box off. Anyone who is listening to this and is like, I’m in the pit, there’s no bottom, just validate however you are feeling and there is no shame in feeling like I don’t know what I’m doing. It took me years, not days, not weeks, not months, but years to get to where I am now. And for me, it really came from getting, I’m gonna cry again, getting to know my child as he is. And eventually, it took way too long. I could have done this faster and sooner, but building a support network, whether it is the educators, the doctors, the therapists who come in and who are saying, trust me on this one, your kid is not broken, we do not fix children, children are not broken. You know what we’re gonna do? We are gonna find out who he is and what he loves, and we are going to build from there. And you know what? He loves listening to the first 11 seconds of the DuckTales theme song over and over and over. And we do that a lot every day. And that’s not scary. And it’s not bad. It’s different. But it’s also hilarious. And just fully, and I know this is something you talk about so much, fully leaning in to who he is made it a relief to reach out to and follow and learn from and listen to disabled adults and leaders and communities. And just leaning into your kid and who they are, I think is the biggest, the biggest tilt, if you will.

Debbie:

Yeah, thank you so much for sharing that. And we’re going to take a quick break and then dive into the concepts in your book. But before we do that, I also just want to give a shout out to Emily Ladau who I had on the podcast not too long ago, she wrote a wonderful book called Demystifying Disability. So listeners, her book is about how to be an ally and better understand the language of disability and navigate our own relationship with disability. So if you haven’t listened to that go back and listen to that. I’ll have it in the show notes. I would love to spend some time talking about your book because I get, as you can imagine, I get a lot of books sent to me. And your book was one that I just, I opened up and I instantly was like, oh, this feels so good. Like it’s really, you know, you mentioned earlier because of your background, you’re able to write accessibly and with humor and it really is, it’s just such a pleasure to read because it does feel like you’re just having a chat with someone who has a good sense of humor. And it’s also succinct. It’s not overwritten. It’s like, look, this is what you need because we don’t have time parents don’t have time to you know, you’re like, this is what you need to know, say this do this. So it’s so practical. So I was so excited to be able to bring you on the show to talk about it. So let’s doa big picture overview of what the book is and what you wanted it to do for parents.

Kelley Coleman:

Yes, so the title, Everything No One Tells You About Parenting a Disabled Child, Your Guide to the Essential Systems, Services, and Supports is the longest title in the world and takes forever to type, but it’s what we need. And each chapter, as you said, I wrote it so that it feels like a conversation with a friend, there’s lots of white space and bullet points and it is very accessible. And each chapter has a personal story, it gives you the basics you need to know on each topic, it has interviews with experts, it has letters from a fellow parent, a letter in each chapter from a fellow parent, and then it has, here’s what worked for me, some bullet points. Here are the templates and the checklists and the worksheets that I’ve been creating over the last decade. And questions to ask yourself and where to start?

And each chapter can be read in any order, wherever you are, and it’s how to do the stuff. So the chapters, there’s getting comfortable with disability, what this looks like for you as a parent caregiver, and inclusion in your community that are more big picture. And then it really gets into the micro, the really boring stuff that we all have to do. And weirdly, so many people are like, is it strange that I laugh during the insurance chapter? I’m like, yes, it is strange. Because insurance is not funny, but it’s doable. And maybe it is funny. So there’s insurance, social services, financial planning, future care plans, IEPs, school, therapies, working with your medical team, all of the stuff that is the job of caregiving, that there is a way to do it. Maybe you’ll love it. Probably a lot of the paperwork will never be fun, but you can be better at it so that it’s not the thing you dread. And it is often what leads you to getting the supports and services that your child needs that also makes your life, it makes this life sustainable over the long term when you can get a handle on the stuff. I was drowning in the stuff for so long and then I talked to other parent caregivers and we are all drowning in the same things and reinventing the same wheels. And that’s my mission is just to change how we are entering into this experience so that we can not be overwhelmed and we can make it sustainable for the rest of our lives if that is what this caregiving job requires.

Debbie:

Yeah, yeah, I mean, I remember. I was years and years into my parenting journey when someone said, well, why don’t you make a three ring binder for all of the neuropsychs and assessments and IEPs? And I was like, oh my God, I never thought of doing that. I had random files and printouts and just the worst organizational system because all of those things just kind of make my brain shut down. And what a simple suggestion, but a game changer. Yeah, I’ve got a binder. What do you need to know? I have colored tabs. I’m going to go ahead and turn this off.

Kelley Coleman:

Yes! Yes. Oh, totally. Yep. I have so many colored Post-It notes and I, someone got me a label maker a couple years ago and I’m like, label makers change everything.

Debbie:

For sure, yes. Who does not love a good label maker? So you teased the chapters. I wanted to dive into a couple. You have a chapter called Everything No One Tells You About Insurance and Gover… Let me say that again. You have a chapter called Everything No One Tells You About Insurance and Government Benefits. And I think when I read that chapter, it felt like one of the biggest gifts of the book, navigating with all of the red tape of insurance and benefits and reimbursements. I know I’m not the only one when I say that is absolutely paralyzing for me. So you broke it down, you answered the most common but basic questions, like how do I even know if a doctor will take my insurance? Like these, you don’t assume that there’s this level of knowledge already, but you also don’t make us, as readers, feel like, know anything. You just cover the basics so we have a really solid foundation. And one of the sections I love the most in that chapter is how to call your insurance company and you have a play by play. This is what you should ask. This is what you need to know. You have scripts in there. It was so helpful. So how did you know to even approach, you know, the chapter in this way? How did you organize your thinking?

Kelley Coleman:

Thank you. So the first way I organized my thinking was by saving this chapter for the absolute last because I was dreading it because insurance and government benefits are terrifying for all of us because nobody knows this. And I was dragging my feet. And as with many of the chapters, I am like, I am on the journey with the reader and saying like what are the questions people have and why is this so scary? And taking that to my experts, and we talked about why it’s so scary, and talked about how we can break this down into usable information, I think in bullet points, so there’s a lot of bullet points, and just go down the list to make this doable, because if we can know what our insurance plan knows. That changes everything. It makes me feel okay about opening these strange envelopes that are coming from the insurance company. It gives me a head start when I am calling them because, oh, I’ve read my explanation of benefits, which I had never read before I started writing this book. I just was cowered in fear from all these things. And I was slogging through, I was doing the insurance things. I am now doing them absolutely better than I was before. I am viewing government benefits differently. I am talking to people in different states about how to find out what is available in their state, which is very different from one state to the next. And really this book is, how can you get the foundational information that isn’t scary and is understandable and doesn’t feel intimidating so that you can ask better questions to just shortcut all of this stress. Oh my gosh, the money that I have wasted in the last decade and the time and the anxiety that I’m making, if I had this book a decade ago, like I’d be buying a lot more fancy cheeses because I wouldn’t have wasted all this money along the way.

Debbie:

I think as you’re talking about that, I’m thinking of this idea of what you’re doing really is you’re eliminating the fear of the unknown and you’re naming it to tame it. And it is a gift that you have the fact that you think in bullet points and easy to read bullet points. And then you kind of highlight the key information. I am that person who will put off calling an insurance company for like six months because just the thought of having to talk to someone just, I freak.

Kelley Coleman:

Mm-hmm. Yes! Yes, most of us do!

Debbie:

Yeah, but that alone is comforting to know. I thought it was some kind of a failure of mine.

Kelley Coleman:

Yes! No! By the way, I have not reached a point when I am excited to deal with insurance stuff, but I’ve done exactly what you’ve done, which is put it off for six months, and then you like take a deep breath, you buy yourself a giant fancy coffee that costs way too much money and you’re like, I’m doing this. And then you call and the thing that you’re calling about actually had a window during which they would cover it. And that window just expired last week. And we need to know what that timeframe is because insurance is a great example. There is a ticking clock and there will be things that you can get reimbursement for, but once that six mark month hits from when that service happened, you can’t get your money back. I have learned that the hard way. Let’s stop doing that so that this plan that we are paying for in our tax dollars for public benefits or with our salaries and jobs for private insurance, let’s stop doing that because like you said, we can take out the fear so that this also doesn’t take all afternoon, that it’s like, this is 20 minutes and I’m done.

Debbie:

Yeah. Oh, that sounds good. That sounds really good. Um, you have another chapter called everything no one tells you about working with your medical team. And again, that was another chapter where I was like, Whoa, you know, you’re, you’re covering again, these kinds of basics that are still paralyzing. You have even within that what jumped out at me, how to leave a message for your doctor’s office. You include a template for what to say to make sure that you’re sharing the right information and to make sure you get a call back. I mean that it’s kind of like the instruction manual that we all need. Is there anything you want to share about that specific chapter that you would really want parents to know and working with a medical team because it’s that imbalance of, you know, of power and knowledge and expertise can feel so uncomfortable.

Kelley Coleman:

Yes, that is an imbalance of all of the things in our case and for our son’s care. We have an enormous team of pediatricians, specialists of all sorts, and certainly therapists and many medical offices and home nurses, hospital nurses. Like we’ve got a whole team and it is intimidating. If we as parents can approach it as being the call that is easiest for that medical office to return, we will get called back faster and we will get the information we need. When we are requesting medical records, we will get those faster if we make it easy. If we come into a specialist appointment, even when it’s scary, and we’ve had some scary ones with the list of questions and knowing, and some of the interviews in that chapter talk about how to be the family that the doctors are excited to deal with and are easy to deal with, and what makes it real hard to deal with families. They’ll still deliver the care, but it will be a different experience if we as parents are making it harder, and we make it harder on ourselves a lot, we might come in demanding and have the answers already. And you know what, we actually need these specialists and we need these home health nurses in some of our cases and how to work with the nurses at the doctor’s office and the hospital and in home health care so that we can make everyone else’s job easier without a lot of effort on our part. And it might be as simple as here’s how to leave a message to get your call returned quickly, to give them the information they need, and for us to get back the information we need. Again, so this doesn’t take days and days, this can be a quick thing.

Debbie:

Mm-hmm. So helpful. So before we wrap up, I just wanted to touch upon two other chapters that kind of jumped out at me. One is something I think is so important and necessary, but it’s something a lot of us don’t talk about unless it’s kind of one-to-one. We kind of share concerns or fears, and that is about financial planning and future care plans. So can you talk a little bit about that chapter and what you see as some of the biggest issues for parents raising kids with disabilities?

Kelley Coleman:

Yes, both financial planning and future care plans often feel like the thing that we know we have to do, but we can just keep putting off because often they aren’t the most immediate. Often they are the most important thing. So when you have your space, take them in small chunks. So many of us, especially those of us, myself included, whose children won’t be living independently, won’t be financially independent and have high support needs, it is scary to think about what happens to them when we are gone. There’s a 100% chance that at some point I will die, period. And so same for everybody else. That statistic holds for everyone. So I need to make a plan. And we need to acknowledge that it can be scary to think about what that future would be, especially for those who don’t have a deep list of successor guardians who will care for my child. Hopefully I live to be a very, very old age, but when he is a child, if he needs another guardian, if he is an adult and needs another guardian, what that will look like. And we need to understand, it is a lot. There might not be a perfect solution, but it can be a disaster for our loved ones if we do not have a plan in place that accounts for the disabilities, that accounts for their wants and needs as an individual, as a human, as a grownup, especially for kids like mine who will become adults who are complex communicators, my son’s communication is still emerging. Everything needs to be in there that he can’t communicate for himself. Ours is a very long document that took a very long time to build and is always being updated. So we need to acknowledge we have to have a plan in place and that we have to communicate that plan to anyone who is involved in that in any capacity to be sure that they are willing and able to take on these responsibilities. And we need to revisit the plan and the care and all the things, ideally every year. And the financial piece plays into that so deeply. If you are a gazillionaire and you’re like, I got it all figured out, cool, call me. I wanna hear what that’s like for the rest of us. We need to make a plan that starts with knowing exactly where our finances are today. Something that above almost everything else that has stuck with me from writing this book is talking to the financial planners, the experts in this, especially those who are specific to individuals with disabilities is starting out by saying and emphasizing there is no shame in where you are financially. Period. Full stop. If you are in debt, if you’re not exactly sure what your finances are, if you are barely scraping by, if you’ve got a lot of stuff figured out, some stuff figured out, like wherever you are, own that because that’s where you can build from if you do not know where you are and that includes your debt and your spending habits and all of the things, then you can’t actually build that into the future care plan. You can’t look at the debt, you can’t look at the future savings, which might be college, it might be home help support, it might be a huge variety of things. Start with embracing where you are now talking about it with someone else, ideally a financial planner. They’re often called special needs financial planners. Language is evolving to catch up with the disability community. So eventually they will all be called disability financial planners, but special needs financial planner is a great thing to Google. You need to talk to people who know this world.

Because, especially for individuals receiving government benefits of any sort, there is a very low threshold of how much money can be in their name and their accounts, especially when they turn 18, in order to still receive government benefits. Going above that threshold can trigger an immediate end to government benefits. That can include the therapies, the respite, the one-to-one, the community supports and the healthcare, the residential support, the day programs, the career support, all of these things that you need to have in place for your child needs to be part of your financial plan and a plan can be put together without a great financial investment and that how much you’re going to spend depends on your assets and how much you have. If you’re that gazillionaire, it’s going to cost you more, but guess what? You can afford that. It’s fine. Know that just starting with making that list of your expenses, your debt, how much money you have in the bank, and even the questions you have about where you are financially, it’s okay to take those questions to a planner and to say, I don’t know what I’m doing, but this matters, I need your help. And they’ll say, cool, this is what I do every day.

Debbie:

Mm hmm. So helpful. I mean, I just imagine the inertia is really strong to not do anything to just avoid this because it does seem so big. But that reminder too that there are experts, there are people out there, it’s, you know, that we can just ask, we don’t have to do all the heavy lifting, we have to be willing to reach out to those experts. I do want to mention that you know, you said earlier that you talked to over 40 experts in the book, and there’s a very robust appendix in the book. So can you spend a few minutes talking about the experts you connected with and how you share their insights with readers?

Kelley Coleman:

Yes, each chapter has bullet points of some of the highlights from my conversations so that the chapters weren’t too unwieldy and long. We put the full conversations in the appendix, read them, they’re amazing. It was so important to me to have a large representation of experts who are also disabled themselves. Some of them talk about their disabilities, some of them don’t. We need to have disabled experts and leaders in all of our fields, especially government. If you’re disabled, go run for office, please, we desperately need you. I reached out to most of these experts without connections. Judy Heumann, who’s known as the mother of the disability rights movement. Emily Ladau, who you mentioned, who’s this incredible leader and author who wrote Demystifying Disability. Rebecca Coakley, Oliver James, like so many individuals were forthcoming and enthusiastic and responded very quickly to a cold email from a mom who says, I’m writing a book, I haven’t done this before, I used to write talking animal movies for a living, and this matters? And will you join, will you collaborate, will you be a part of this? And plenty of people said no, but so many people said yes, because so many people understand that we need to teach parent caregivers how to do the job, how to approach disability itself, our own ableism, how the heck to call the insurance company, whatever it is, we can empower all of our children, disabled or not, by giving parents and caregivers the tools to do the things. We might not wanna do them, but we have to. So we can start from a place of getting real information from real experts and the expert interviews are phenomenal.

Debbie:

Yeah, they really are. And the whole book is phenomenal. I just want to again, congratulate you. You are a force, you know, I can just your passion comes through in this conversation. And you are already and will continue to be such a gift to parents navigating this journey. So I’m excited to see where this takes you. So listeners, the book is called Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports. And Kelly, tell listeners where they can connect with you and learn more about your work.

Kelley Coleman:

Yes, the easiest place is my website. It’s kelleycoleman.com. You can order the book. Links are on the website. Every book place, you can order it, buy it. And I really want this to be in every library, medical office, social workers office, educational setting. We need to get this book to the people who can’t afford to spend $20 on a book. So please share this. Share this with your libraries. The thing I’m most passionate about is connecting with the families who don’t have the resources, who don’t have the incredible privilege of time and all of the other incredible privileges that make this possible. We need to work together so that everyone has equal access to information.

Debbie:

Yeah, that’s great. Thank you. So listeners, you heard that. Go out and make sure your library carries the book. Ask for it at bookstores and help spread the word. So Kelly, thank you so much. I’m so glad that we connected and congratulations on such a wonderful book and labor of love.

Kelley Coleman:

Thank you so much and for all that you do.