Kelley Coleman is an author and advocate who has spent over a decade navigating public benefits, insurance, and education for her child with multiple disabilities. We sat down with Kelley Coleman to talk about her new book, practical tips, and a pep talk on how we can advocate to make sure our kids get what they need.
Watch the full replay of our event below, or check out this article for the recap with highlights!
Lindsay Crain
Hey everybody, welcome to Undivided Live. I'm Lindsay Crain and I head the content and community teams here at Undivided. And today we are talking to Kelley Coleman, parent and author of the incredible new book that comes out tomorrow: Everything no one tells you about parenting a disabled child. Is this the theme of our lives? Yes. And I'm not exaggerating when I say honestly, that I think this is going to become the quintessential book for parents in our community. And I'm not just saying that because I'm also a huge fan of Kelley as a person. I'm honestly I'm so grateful that this book exists. Kelley tackles on a large scale what we tackle with a more focused and personal lens at Undivided. And that is breaking down these very large, somewhat scary, definitely confusing systems and situations. And she makes them doable. So Kelley offers a jumping off point that makes things seem possible, because they are. So Kelley's book tackles logistics around systems like public benefits, IEPs, talking to your care team, and handling insurance. In fact, Undivided's own Leslie Lobel, our Director of Health Plan Advocacy, was one of more than 40 experts that Kelley talked to for her book, and she cuts to the chase on how to get started and where to focus. So the book also tackles culture. It tackles the inner voices and the outer voices that you might wish that you could silence. We're gonna talk about that a little today. It also talks about the voices that you need to hear, embrace, and seek out. So we are so lucky to have this incredible author and human Kelley Coleman sharing with us today. She is a feature film development executive turned author who is active in the disability advocacy community, she serves on committees for CHLA, the Los Angeles Unified School District and Canine Companions. Her book stems from her own parenting experience with two sons, one with multiple disabilities. She wants to give parents the tools to spend less time navigating the stuff and more time just loving their kids exactly as they are. Right on. Kelley, thank you for being here.
Kelley Coleman
Thank you for having me, and certainly for all that Undivided does and is doing and has built. The book and my approach to it all is how can we do things in a way that people actually understand and don't feel freaked out by everything? And I feel like that is so much crossover exactly with Undivided because it's not just here's a bunch of legal speak, good luck. It's here are actual humans. And my book reads like a conversation. And Leslie, who you mentioned who is in this, is just super hero of the book that so many people have said, Is it weird that I loved the insurance chapter? No, because of Leslie!
Lindsay Crain
Exactly. I think I'll probably say this later. Because every time I introduce Leslie, it's this is the only other human, or this is the only human that I know that actually likes talking to insurance companies and she can make it fun, even though it is one of the most horrible things that you know, that we have to do, or phone calls that we have to do are the least fun. And that is how your book is though, right? Like really takes, you know, it does take some fun things and it takes some really unfun things, and makes it seem a lot less scary. And it also makes it feel like we're talking to you know, one of the analogies we always use at Undivided is, you know, we we want that collective knowledge, you know, talking to experts, talking to parents and bringing that together, because so much of what we discover is based on luck. It's like who did I see in the waiting room today? I happened to meet this parent who told me something that changed my life. What if I wouldn't have met Kelley in the waiting room today? How could this have led me you know, to the next thing that helped my child? So that's what that's what we strive to do. That's what this book is, it's like you are lucky enough that Kelley was in that waiting room. And here, here's what you've learned really through your, you know, blood, sweat, and tears, and collaboration with so many experts, as well as expert parents and experts that are working in the field.
Kelley Coleman
And as you know, we start out from this place in this journey and so many of us that are in this exact place for years, where we don't even know which questions to ask or what systems we need to tackle or what the social service agency thing is, that I've even talked to parents of disabled kids who are neurologists, or special education teachers or social workers who are doing all these things. And they say, Oh, I had no idea until I was actually in this. And you're right. It's like having Undivided. Reading this book, it's like, thinking I hope I run into somebody who's going to tell me what to do, so out of it. And really educating yourself, not just if you're brand new to this, but also when you've been doing it for a while, what is the better way of doing this? Because I know for me, and for everybody I talk to, we waste a colossal amount of time and money and energy, with all of the paperwork and the planning, and all of this just boring stuff that isn't going to go away. And so many of us, you know, whether it's a future care plan, or a financial plan, or whatever, we just avoid, because we just can't wrap our heads around it. And so a lot of this is like, how do you get enough knowledge that you can even begin to wrap your head around this stuff?
Lindsay Crain
Yeah, I love I love I love this stuff. I'm probably going to keep coming back to that today. Because it's, you know, it's it's a great term, it's a nice term for a lot of the stuff that we have to deal with. Just for a bit of housekeeping. I'm also with you today in the chat, we have a community manager, Donna, she's gonna be passing along your questions to Kelley and I if you can throw those into the chat. We did receive a lot of awesome questions ahead of time. And because there are so many, we just asked you to please join our private Facebook group, it's for parents only. So we can continue the conversation there because I know we're not going to be able to get to all of them. Like I said about the stuff and Undivided. We're also big fans of spending less time on the stuff. So just so you know a little bit about us, our Navigators work with parents, one to one to help you access the systems that your child needs to survive and thrive. So for more information on how Undivided can support you, you can schedule a free Kickstart at the length of Donna shared in the chat, you can meet your Navigator within days, they love helping you sort through all the stuff. And there is indeed a lot of stuff. And that's why we're here to talk about today because everyone deserves a partner in this journey. And lucky for me today, my partner is Kelley, and we're going to talk about everything no one tells you about parenting a disabled child. So Kelley, I know you kind of you know, you kind of touched on this. But I would love to know why you wrote this book. I mean, isn't your life busy enough?
Kelley
I know, I have nothing to do. So it's like, hey, why don't I write a book? Cool? Wouldn't that be nice? As I'm sure every parent on here who has a kiddo with a disability has heard, like you should write a book. And no, no one has time to write a book, I happen to be a writer. So that helps. And this is the book that I swore for years, I would never write, because it just sounded so boring. And I finally hit that wall after things had been going well. And then they weren't and medical issues and all kinds of crazy stuff going on with my son. When I realized this is the book that I need to write, largely because I'm so passionate about equal access to information that we can understand and use and act upon. And we're all just reinventing the same wheels. And I just feel so passionately about, we can actually stop that. We can actually start from a place instead of a decade of Googling, which is what I've been doing for the last decade. You know, you can dig up all kinds of stuff. But how do you give yourself a baseline of knowledge so that when you come to an Undivided when you come to a specialist office, when you are making that call to your insurance company, so that 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.
Lindsay Crain
And why do parents need to read this book? What what makes it different from the books that are already out there? Like when you started this journey, you know what was already out there. Why did we need this book?
Kelley
There are so many great books out there that are memoirs that are so beautifully written of parent journeys along this path of disabled individuals who are telling their stories so wonderfully and articulately. There are some books out there written by lawyers and doctors of how to do the things and acronyms that I I keep trying to open and then I get intimidated. And then I put away. This book weirdly doesn't exist yet. And it should. It's like, here are all the categories of things you need to figure out. And then here's the personal story, the basics. Each chapter has at least two interviews with experts. And the bullet points of here's what worked for me, questions to ask yourself, here's what to do now. And all of the templates for school visits or leaving a message for your doctor's office, it's all of this basic stuff. So the the long answer to why do parents need this book is, it doesn't exist yet. And it gives you the handbook for how to be a caregiver. Because 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. And this book gives you that training, I have wasted so much time and money and energy. And if you're thinking like, Oh, I'd really like to save those things, then there you go.
Lindsay Crain
Well, I can personally attest to the fact that when I started this journey, yes, there was not one book that I could go to that could give me any of that, like you said, there's all these books that you can get a little bit here a little bit there. I know a lot of books that people would tell me about, were about grief. Whereas my personality, and I'm not saying that, that, you know, there weren't moments of grief or sheer terror. But my personality is one that I also want to jump in. You know, it isn't that I want to ignore that. But I also want to figure out what do I need to do right now? Because my daughter needs many things right now. So where do I go next? And this really, truly is the answer to that book that so many of us wish that we would have had. However, I also want to point out something that you said, it's not, I don't think it's just for new parents. But how would you respond to that?
Kelley
I have spoken with so many parents who've said, Wait, my insurance plan covers that? And haven't been doing these things for years, or just figuring out is there a better way to do the things that I've been doing? How can I set a better system into place? I still haven't done a future care plan, I have personally, but grand scheme for those who haven't done a future care plan. All of this paperwork is endless. And if we can create a system and find a better way to do it, it may not be fun, it may not suddenly end, but to speak to you know what you were saying this feeling of just all of this stuff. There is so much that we can't control in this life. And for me, looking through the book, and I was thumbing through it for some resources this morning. It really helps to visualize and be objective about what you can control and what you can't control. And then I'm a doer as well, and to look at, oh, I'm actually going to act on the things I can control and not try and fight the things I can't. Because 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, 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 that is actually self care. People say like, oh, 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 fancy things.
Lindsay Crain
That's, that's me. I will say that's 100% me right? I can't get into a space of being able to relax when when my mind is spinning. Right. And actually, I think it's a great point when you're talking about like the boring stuff, but that we absolutely need to support our families to be able to support our children. I would love to start off by talking about systems, the systems that our families rely on to keep our kids alive and healthy and thriving. They can also be the systems that feel like they're going to take us out, right. So at Undivided, we help families access the supports they need from essentially three main buckets: public benefits, education, and insurance. So I would love to start with your best quickfire advice for these three core systems that our children rely on because everyone knows you can you know summarize Regional Center in a sentence right? No.
Kelley Coleman
Aaah!
Lindsay Crain
It's the scream. So what is your best advice for tackling public benefits?
Kelley
Public benefits are a massive thing to tackle. And I'll include our private insurance companies within that, because we're talking about this huge bucket of school, social services, insurance from wherever that is coming from. So start with if you are feeling overwhelmed, yep. That's how you feel, like validate that, know that. I'm guessing most of your audience is California based. But even certainly state to state, even within California, what is happening in your school districts or with your specific insurance plan or at your specific regional center? It 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. And 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.
Lindsay Crain
Great advice. And many parents, unfortunately have to learn that the hard way and are shocked when they realize, yeah, yeah, somebody living five minutes away, absolutely has completely different access, although if you're around long enough in this game, actually sadly not a shock. And we spend a lot of time like breaking down all of these systems, like you know, microscopically. And so Donna is going to be sharing some links where you can find out more information about those resources. So I'm gonna kind of touch on these lightly because Kelley and I have a lot, a lot to cover. And so Kelley, this is another really huge question of what is your best advice for making school work for our children?
Kelley
School can be daunting, because for many of our children, there is not a perfect fit. So while that would be lovely to have a perfect fit, it might not exist. School can be a wonderful space for your child, even if it is imperfect. And know that it can also be a break for you that you might need. My biggest advice with working with our school and making it work for our children is have regular and consistent communication with your teachers. Ask them the best way to communicate with them. Some prefer text, phone calls, talking at drop off/pickup, scheduling a conference. Always be having a conversation how you can support them, what they are seeing, not just the bad things, but the great things too. And so that you can bridge home and school, you don't need to be their therapist 24/7. But before you are going into an IEP meeting, you should already know what's going on with your child at school because you've been in communication with your teacher. If there is a language barrier, find a way to communicate. If you are working so many hours, you're not sure how to do it, communicate that to your teacher. They want you to be in communication, even the teachers who are tricky, and we've had that situation before as well. Let the teacher know that you want to support them in supporting your child. And they will in almost every instance really step up to the occasion when they see that you want that communication because it makes your child's life better and it also makes their life easier.
Lindsay Crain
Absolutely and and we know that that is always hoping for the best and like you said there can be some, you know, tricky situations, but we always try to start off in a place of collaboration as hard as that can be. It does feel like we're in fight or flight a lot. But I I love that advice. And I know we're going to cover some things that can be inclusive of school and community and a lot of other issues that come up with parents. What we'll be covering in the next hour. But lastly for systems, I did kind of, maybe maybe the advice is the same when we talked about public benefits. But I would also like to know your best piece of advice for insurance because it's one more bucket that we are constantly living in that it's so incredibly stressful. I mean, all of these buckets, right, they're absolutely essential for our kids to keep moving up to get them what they need, to get them, you know, what, what, what would help them thrive and to get the things they absolutely 100% need to, you know, to live, to eat, you know, whatever it might be. So, we know that we already covered the fact that you had some great your expert advice included Undivided's Leslie Lobel. So that's, we know you're getting fantastic advice. So what can you share about I will say, personally, one of the most dreaded parts of this for me on a personal level, but insurance?
Kelley
It is dreaded, isn't it for all of us. So I will actually quote Leslie again, there are other wonderful people in this chapter. But Leslie's kind of amazing. So if you're like, Huh, what's this Undivided all about? Check into Leslie, she knows her stuff. And a quote from her from the book that I often recite is know what your plan knows from the start. What do I mean by that? So knowing what your insurance plan knows, they know what is covered, what is not covered. Your insurance plan knows how many physical therapy appointments are covered every year. If that is a hard cap, or if you can appeal for more. Your insurance plan knows what codes they will need. They know if diapers are covered or not. They know what things are called, they know how to get through the phone maze. Start with familiarizing yourself with anything that you might need to access. And before you call or deal with your insurance company, and before you go to a provider, especially those who don't take your insurance, but you might be submitting a bill for, do the thing that nobody wants to do. But it's actually not that bad. Go to your insurance companies websites, or if they mail you a paper copy, go to your explanation of benefits, and read it and get out your highlighter and get out your pen. And my son, for example, accessess feeding therapy. Figure out where and how that is covered. And if I can't figure out that when I'm reading my explanation of benefits, I have a notebook next to me, my notebook has my questions, including, I can't find if feeding therapy is covered. Where can I find that specifically? And whether it's a yes or no. As I'm reading the explanation of benefits, I'm making a list of questions for myself. And even if it's I can't find this, ask the person on the phone to specifically tell you which page and you will scroll to that page and say, Oh yeah, line 14, here we go. And then you can circle that. Make a note of that so that you know, when it comes time to access these benefits, if it's covered, if you'll have to pay, if there's a deductible, if there's a copay, if you can only go to certain people. Read through and familiarize yourself to the extent that you are able before you pick up the phone to make the phone call. And I know this is gonna sound wild, but it feels so different. And making that call is actually not dreadful when you're like, when you start with Hi, I was just reading my explanation of benefits and I have some questions about coverage. Then you could sort of hear the person on the other line saying whoa. Amazing. You can sort of hear the other person leaning forward and saying, Oh, I'm happy to help you. What do you know? And doing that bit of detective work, is it going to be the most fun thing you do all week? I hope not. I hope you're doing something more fun. But it is so rewarding. And front loading a bit of work to make everything else easier is 10,000% worthwhile.
Lindsay Crain
Right? Well, that bit of advice can go for absolutely anything that we're talking about today. And everybody knows that feeling and we can't always feel so prepared. But once you get into a routine with whatever you're doing, that organization, that prep work feels less, hopefully, feels less monumental, at least on the every day.
Kelley Coleman
Yes, yes.
Lindsay Crain
But I mean, I don't think you know, we're talking about a lot of things that drive us crazy. Very important to note that we can't drive this home enough, right that this book, and 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, right. And our kids are not the problem. They need access, accessible solutions, accessible support, accessible parks and classrooms and workplaces. The world is neurodiverse. So let's stop pretending that it's not. And one of my favorite lines from your book underscores this perfectly. And it sort of feels like my theme song probably for a lot of us. But I'm not out to change my child. I'm out to change the world. So can you explain that?
Kelley
Yes, so in my case, my son has a yet undiagnosed genetic syndrome. And within that many sub diagnoses, his disability is biologically a part of him. So it would literally be scientifically impossible right now, or ever, to change him. I am not trying to change him. I am not trying to therapy away his autism, epilepsy, cerebral palsy, cortical vision impairment, feeding tube, like, all of these things, and more. Because not only can I not do that, but like, he's, he's a cool kid, like, I'm focused on him as he is. And like, we're good. It's not always easy, but we're good. And the world actually does need to change. So many of us grew up with this. Don't stare, don't look, pretend like you don't see the disability, pretend like it's not there. That has led us to fear disability and pretend like, oh, that disabled person isn't over there in their wheelchair. You know what, they're there. They know you see the wheelchair. And it is so important. I am not disabled, many parents in this space are not disabled and/or do not share the disability with their child. And if we can listen to and learn from and follow disabled leaders, you know what, disability isn't scary. It's not hard to talk about, it's not hard to say the word disability. And it's very clear that accommodations are not extra, 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, and it's his world, and we're all just living in it. He will never be like the other members of my family in so many ways. And we're good with that. And we need the world to catch up to him in that.
Lindsay Crain
Absolutely. Yes. And I mean, everything that you're saying. It takes a long time for some parents to get there. Right. And so you know, we say that without any judgment, and wherever you are, we just we hope that you get there. Another, oh, sorry, you were saying.
Kelley
And hope that you get there in terms of loving and supporting your child as they are and not trying to fix. To be honest, I would get rid of my son's epilepsy in a second, if I could. There are certainly plenty of very real, especially medical, things that can cause physical suffering. And, and, again, epilepsy in our house, I would love to get rid of that. But I have reached a point, and it's taken me a long time, when we are dealing with the worst of it. I am seeing epilepsy for what it is. And I'm also seeing my son for the human that he is. And it is absolutely a journey. And we're like you said wherever you are on the journey, you are not alone. And we are all in this together.
Lindsay Crain
Yeah. And another big piece of that is advocacy. And you know, it can look, we had an interesting conversation recently, Kelley and that advocacy can look a lot of different ways. And in your book, you asked the question, how can I make a difference? And for too many parents, right? They might also be thinking, well, you know, what can I do? I'm just a mom, right? Because how many times do we hear that? And you know, we're trying to get through every day the best we can. So I'd love for us to sort of reframe what advocacy can mean because every single parent in our community is an advocate, right? Whether you realize it or not. You are so Kelley how do you define advocacy?
Kelley Coleman
Advocacy absolutely looks different to each person. And often from one day to the next. Advocacy is hard to define. But we know it when we see it. For my son, his advocacy might be squealing loudly and stimming at the grocery store, because his advocacy might be doing that, and therefore showing everybody around him, that disabled people are able to and have every right to take up space physically or metaphorically in the world, just like everyone else. And that is advocacy. When somebody says, Hey, can you keep your kid quiet during the movie, and I say, Oh, this is quiet for him, thank you for understanding. That is advocacy. All of the little things that we are doing, including the bigger things, like standing up to an incorrect evaluation during an IEP, like working on a goal because you are advocating that your child can achieve more or better or different. It can be lobbying senators and getting bills passed, it can be listening to and following disabled leaders and supporting them when they are putting themselves out there getting the bills passed. Advocacy can look different day to day. For years, I certainly didn't have the energy to do the advocacy other than waking up and going through the motions and going to the grocery store when we can. It varies. And you absolutely can make a difference, whether it is not apologizing for your child when they're not doing anything wrong. Whether that is sending an email that you want a bill passed about the timely translation of IEPs. Or whether that is writing a book, starting an organization, going to a support group. It can look so many different ways. And we as parents are uniquely poised because it is coming from this position of love. I'm not necessarily doing this for myself, because that's easy to put by the wayside. When I'm doing it for my kid, wow, it feels urgent, because it is.
Lindsay Crain
And even if, you know, I know, there's parents that are uncomfortable with advocacy. So, you know, I, I'm sure you have had a lot of parents say to you, too, it's just it's not innate for me. It's not in my personality, right. But we know there's no steps forward without us manually pushing or shoving it forward, sometimes, in some circumstances. So what do you want to say to parents who are uncomfortable asking for things that people don't seem to want to give?
Kelley Coleman
It's hard, isn't it? Yeah, and every single human will have a different comfort level, for different things and in different situations. For me, it depends on how much sleep I've had my level of comfort. When I've had a lot of sleep, I can move the mountains. When I haven't slept, not so much. Know that you will not regret standing up for your child. Know that there are ways to advocate for your child. We just had our IEP our annual IEP meeting on Friday. And we're in the middle of our regional center annual redo of all the things. I am very much in the thick of it. And I have learned a lot of the comfort comes from first educating yourself. Being comfortable asking questions, and thinking about how you are most comfortable in that space. Some people are most comfortable coming in and putting their foot down. Other people are more comfortable asking questions to arrive at a place of understanding and really think about what your goal is whenever possible before you enter into these interactions. For example, can you tell your IEP meeting or your IEP team based on my child's goals, my child's needs, my child's right to a free and appropriate public education, which is what all children are entitled to under federal law, based on these things, these are the outcomes that I am seeking from this meeting. And then the onus is on the team to say, Oh, here's why we're not going to do that. That's advocacy because you're saying, I'm educated enough to know what my child is entitled to. I'm not being unreasonable. Do your best to always be reasonable, even if you're angry, and we all get angry. But approach it from a place of here's what we are looking for based on the facts, and then put the onus on someone else, rather than them saying, Oh, we're not offering your child speech therapy this year, even though they're not able to speak. And then you find yourself floundering be like, Yes, you are, you have to, and they're like, No, we're good. We've all been in those meetings.
Lindsay Crain
We've all been in those meetings, that's for sure. And just when you think you're gonna have the answer to whatever they may say, sometimes a new creative one gets thrown right at you.
Kelley Coleman
They do get creative sometimes.
Lindsay Crain
I mean, I love everything you're saying about advocacy, obviously. And it does take some people to get comfortable with that. But quickly, you realize that there really isn't a choice. I also love that you touched on another form of advocacy in your book. And that's rooted in storytelling. And so you spoke to you know, disability rights activist and icon, Judy Heumann, who you were able to
Kelley Coleman
I was just saying, I just knocked over my book.
Kelley Coleman
Oh, there you go. Well, yes, of course, you know, Judy, Judy is right. Still, you know, you know, fighting, fighting the good fight. But she told you, she told you during your interview, that we need more people to tell their stories. So I don't think that she meant that everyone needs to write a book like you, bravo, if that is the case, right. But what did she mean, Kelley? How can that look? Why is this important?
Kelley Coleman
We need more people to tell their stories is so true, because what are the stories we are hearing? Are we hearing firsthand accounts of the parents, the caregivers, the children who become adults who are disabled themselves, from the disabled parents, who have been through this and have been through this at different levels? I was so fortunate to be able to interview Judy Heumann, I was able to sit down with her in person at her home, she invited me and I happened to be in town. So I said yes. And I spoke with her a number of times after that, a number of times after that, as well. Our stories are so important, because we can learn from one another. Very often it becomes messy. It's always messy, being a non disabled person entering into this space by way of your children. And I spoke with her about the messiness of that, and about how do we fully support our children as disabled individuals, and not talk over and speak for them, which can be tricky, especially with complex communicators, like my own son, and also not erase our own experience. So often, as parent caregivers, we feel this need to be doing all the things for our child and to be waving the disability flag and to be staying up with them all night, and then packing the lunches and then the universe revolving around them. And for most of us, that's not sustainable. And we need to find and share with each other, whether it's in conversation, whether we write a memoir, or make a movie, or whatever it is, what are the stories of the caregivers? Because we are a valid part of this life and this existence, and it also is an important part of the story. Our stories of care, as caregivers can be part of the advocacy and the policy and the media, all of this, and we can include our stories, while we are still centering our children, as disabled individuals, and letting the disability, if it's not our own story, give structure to our stories without claiming it as our own.
Lindsay Crain
Which, yeah, because no one no one can tell your story like you, just like no one can tell our child's story like they can. Yeah, and that's something that you've touched on several times since we've been talking and definitely all throughout your book, which is really important. And that is the importance of meeting, knowing, seeking out, and being led by people with disabilities. Yes. And when you talk to Judy Mark, who is a serious advocacy powerhouse in LA, who leads Disability Voices United. And she said, everything I learned in the early days was from other parents. Everything I learned today, I learned from adults with disabilities. So, which is something I think that you know, we have to repeat over and over and over to ourselves, knowing that these little people are going to obviously grow up to be adults. So what are the most important things that you learn from the incredible group of self advocates that you talk to?
Kelley Coleman
I have been so fortunate to talk to many self advocates, whether it is the person at the movie theater that you run into and have a conversation with while you're eating popcorn, or whether it is Maria Towne, who runs the America is the president and CEO of the American Association of People with Disabilities. Everyone has a story of their advocacy. And letting disabled people lead the conversation in advocacy is something that is so important to learn and internalize. Because what I have learned, it's actually a shortcut to easier parenting for me. And isn't that nice when things get easier? I very ignorantly, because all the ableism and the bad ideas and the don't stare that I had had programmed into me for years, I thought for so long, like I can't be around disabled adults, because I have a baby and he's disabled. And now he's a toddler. And it's just too much because it's just too exhausting to even think about what his future will be as a disabled adult. Wrong. No, no, not at all. And like, how horrible and I hate saying that out loud. But I think it's important to say that out loud, that I was scared of what his future would look like. Because my ideas about his future as a disabled person, were based on nothing. And we create these stories in our heads of whether this is hard. This is tragic. This is tricky. This is whatever. Well, 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 have support needs always and his needs will be many. He's gonna have a great life.
Lindsay Crain
And, and I know that parents who've been on this journey a little longer, a lot of them, hear what you're saying, they get it, they're there. And then there's the parents who are at the beginning. You know, they're they're dealing with a new diagnosis, they're unpacking everything from you know, how do I feel? So what do I do next? They might be struggling with the fact that they have to be an advocate. I know many families who spoke who speak just like what you were saying, right? It is too much for them to be around adults, it because they are still dealing with everything that comes with that inside of them. So what do you want to say to parents who are new to this world, this journey?
Kelley Coleman
For parents who are new to this world, if you are feeling overwhelmed, and inadequate, and like what is happening? Yep, we have all been there. Our son was an infant when we started on this journey. And we will be on this journey forever. With a high level of support needs. 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, I'm gonna cry, here I go, you will fall in love with who your child is, as a human being. You love them because they're your baby or toddler, whatever. But the more that you get to know them and who they are, that is the thing that pulls you out of this. Some people need to withdraw for a little bit. When you can, connect with the community. Some people need to power through all of the paperwork; when you can, take a breath and find a better way to do it and to make this life sustainable. You'll get there.
Lindsay Crain
Love that. My daughter is 14. And sometimes to watch how she's growing, you know, like anyone looks at their child, how they're growing up. I'm so astounded, and I wish I could say to myself, like back then right, like, your daughter is going to be kickass. So you know, there's, there's, there's definitely things that we have to be on top of, there's definitely like concerns that I'm going to have until my last breath and fears. And that's about me being a mom, it's not about her, and I am so in love with the person that she is. And she is 14 that I want to hold her and I want to squeeze her and I just want to tell her how great she is. And of course, it's like a long get away. Like, I want to hold her and cry and tell her how wonderful she is, and I get pushed away.
Kelley Coleman
And to acknowledge to all the parents, whether you're brand new to this or have been doing it for decades. We're not saying, and it gets easy. And this becomes, also I'm always suspicious of people who are like this is the best thing ever, really? IEP meetings are the best thing ever? There is a lot of this, that you just have to smile and nod and know that this is a job. Caregiving is a real and often very time consuming job. It is a different path. And you're doing yourself a disservice to not acknowledge the fullness of all that experience. It's okay to say when it's hard, and then that gives you even more leeway and freedom and enthusiasm to say, this is wonderful because of who my child is, because that's in there, too.
Lindsay Crain
Absolutely. And kind of those inner voices that we've been sort of talking about in different ways, you know, doubt can really eat you up. Right? Many of our parents swim in guilt, or feelings of inadequacy, like you just said, Kelley, and every day can honestly, some part of your day can feel like David versus Goliath. And very rarely do the parents feel like Goliath. And so, you know, let's, let's talk about those inner voices. Because for many of us, there's this persistent little sound that saying, you know, I'm not enough, what if I can't do this, or I'm failing my child, or I'm not doing enough. So what do you say to those inner voices when we are trying so hard all the time, and we still feel like, I'm failing? I'm failing us.
Kelley Coleman
I wish that I could read a meme that says, hey, don't feel that way. And then it would actually sink in. And I'd be like, cool. I don't feel that way anymore. That was so easy. Wouldn't that be great? It is not as easy as saying I am enough. Check that box. I'm good from now on. These feelings creep up when it is the least convenient. And when you are, when you're not sleeping, you're not eating well, and it's not as easy as like, oh, go have a salad, I'm good. No. All this is going to happen. We all know we shouldn't say these things. We all know we shouldn't feel these things. And it is constantly reminding 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. And when you are in the moment, and you are making decisions, whether it's to maybe start a therapy, whether it's to stop a therapy, whether it's to choose one school over the other, I have like some weird lighting going on. To stop and say, what information do I need to feel good about this decision? And to make it objective when you can, so that it is not just coming from a place of emotion. And just think about what do you need in order to make the decisions and in order to do the things? Are you gonna have days where you feel like you're not enough? Sure. No? You're awesome. But we get it, we all feel that way. And the days when you don't feel that way, remind yourself, it's going to happen, so that when it pops up, you're not surprised by it. And if Thursday morning, you're like crying on the kitchen floor, you can say to yourself, I knew this was going to happen. And this is the result of 10,000 things. This is not a result of me not being enough. This is a result of the fact that dealing with regional center makes me cry on the floor.
Lindsay Crain
Yes, be kind to yourself. We're not telling you you need to go to yoga, but be kind to yourself.
Kelley Coleman
If you want to go do yoga, do it up. All the trendy 20-something who are going to brunch afterwards.
Lindsay Crain
If you want to just like go to your kitchen and cry, then you know, you can do that too.
Kelley Coleman
Yeah, that like going to the kitchen and crying, like that self care some days and who won't do that?
Lindsay Crain
Well, another thing that I don't think is talked about nearly enough, definitely in this space, but it's something that you touch on frequently. And that's identity. And you talk about, you know, like you have today how caregiving is a job, and it's a job we all know is all encompassing. So how do we keep a sense of who we are, you know, we're the ones who walk into meeting after meeting appointment after appointment. And we're called mom instead of our names. How do we how do we, you know, keep rooted in who we are as a person Kelley?
Kelley Coleman
The identity piece? Oh, this is hard, I can't, I feel like every the answer to every question is, well, that's hard because it is. It is all everybody, it's hard. Whether you're in this world or not world of disability and kids with disabilities. We just sort of where our wear our heart on our sleeves. And when you are wearing the heart on your sleeves, it can really shift who you are. For so many of us, the job of caregiving necessitates that we leave employment, whether that's inside or outside of the home, it necessitates instead of just being a parent, you know what, suddenly just being a parent isn't enough, it might not be the thing that is literally keeping your child alive. If I was just a parent to my child, he would not be alive right now, his medical needs far outpace the demands of standard parenting. To the extent that you are able, embrace the fact that caregiving is a job. It is one of your many identities, you can start to look at the caregiving experience as its own thing, and the stresses, the work, the paperwork, the tasks, the cognitive labor within all of that. You can really look at that as a part of you and who you are, even if and especially if you never expected this. And then you can also look at oh, there are these other parts of me. And when everybody says like, oh, take care of yourself first put on the oxygen mask, you know what, when my kid is having a seizure, I'm not looking for the warm slippers to take the emergency room. I'm holding him while I'm on the phone with 911. We need to know that sometimes the caregiver identity is necessarily going to be the priority. When you have the quiet moments, when you have the down moments, remember to ask yourself, what is the identity that you want for yourself, in addition to and outside of being a caregiver? You will find that, it will be there, it will take different forms but know that it is there.
Lindsay Crain
It's, there are days when it is really hard and you feel like you've kind of, you know, and even if you take great pride in that identity, sometimes it can be overwhelming, right? Because this this is it's a life that it's very, you know, emotional, right? The emotional ups and downs. Like I said, you feel like you're always on the defensive. You're always, you're just in the light, you're bathed.
Kelley Coleman
I am, you know what I'm going to do? We're live, people. Whoa, now it's something weird. It's cool.
Lindsay Crain
It is, like your as long as, there we go, there you go.
Kelley Coleman
Lighting is down for everybody.
Lindsay Crain
That happens so many times where we're arraning ourselves. So okay, I know I'm looking at the time, we're probably gonna go a little over. But I want to hit on some of these important things at the end, even if it's briefly because it's really important. One huge thing people with disabilities will tell you: they do not want to be an inspiration for essentially being alive and doing regular things. So yet the inspiration trope is one that you know, won't seem to go away. So Kelley, what do you say if someone sees you in the grocery store with your son and tells you you're a huge inspiration?
Kelley Coleman
First of all, I'm probably like wiping vomit out of my hair. Can I just like get the baby carrots and go home now? We get that. I have all kinds of quippy things in my head. The honest answer is, sometimes I have the energy to address it. Sometimes I don't. And I just smile awkwardly, and I'm like, I'm gonna go get some eggs now. Do I feel like I'm an inspiration for just being a mom and taking care of my kids? No. I sure don't. Do I feel like my kid is an inspiration ecause he left the house in a disabled body just like he does every day? No, he's a 10 year old boy. He wants to stare at airplanes and go to swim lessons and laugh at farts. Like, he's a 10 year old kid. Like, he's not inspirational, just because you saw his feeding tube. Awesome, cool. Um, when someone says something like that, and I know it's coming from a good place. I say things like, you know what, we're just living our lives. Not always easy, but we have a lot of fun. And just reminding people, all we're doing is living our lives, just like you are. If somebody says, Wow, the way that you handled that challenge with the IEP is really inspiring. Cool, thanks. Because that's me doing a thing. But me just like getting some, you know, getting some salad. It's just life. And learning from disabled advocates and leaders, the degree to which they hear, you're an inspiration, you're a superhero, you're all these things, and they're just trying to go about life, really highlights how we view disability as something that is specifically undesirable. And therefore, if you are existing with a disability, you are inspiring because you've overcome this undesirable thing. It just feels yucky. And it doesn't sit well. And it's okay to just treat everybody like people.
Lindsay Crain
It's, even if it's unintentional, it feels very patronizing.
Kelley Coleman
Yes, it feels very patronizing. And your kid is such a superhero. Why, because he pointed at the garbanzo beans? He likes pointing at beans sometimes.
Lindsay Crain
Well, and it also just points to the unfortunate lack of exposure that a lot of people have to people with disabilities, which again, can be looked at in a lot of different ways. Some of that just might be their life. Others are because many systems try to keep people with disabilities hidden and segregated, which of course, there's a lot of laws and and as time is going on, we're trying to move move beyond that, right? Getting people into the community, getting people into classrooms with their peers, you know, the way that it has been supposed to have been for a long time. But, you know, until again, the world accepts neurodiversity, and we're starting people at the youngest ages being around all kinds of kids in classrooms, at the parks, everywhere, and seeing those accommodations, and that access all around them. And that is normalized. And because that is what is happening, then we're still going to get people that say your son's a hero because he pointed to the garbanzo beans.
Kelley Coleman
Yeah. And it comes back to you know, to bring this all around full circle is sometimes the advocacy is just showing up and doing the things. And it might not be inspiring. But what it does, is, for those of us, I can speak to the personal experience of having a child whose disability is visible. Many people's disabilities are not visible, i.e. you can't look at them and be like, Oh, you're disabled, I get it. By having people with disabilities in all spaces, in all professions, not just in disability advocacy world, but being leaders, being experts, having jobs, kids at the park, all the things, we are normalizing the experience of disability for everyone. When we were out this weekend at a big outdoor event, and my son with his iPad, which is how he communicates. He has a program, the only program on there is his communication program. And he is walking up to people. And he's waving and pointing the button that says hello. And when they say Hi, what's your name, and he pushes the button that says Aaron, he is advocating and he is normalizing for all the people who were saying I've never seen a device like that. That's amazing. For kids who said to me with all like wonderful curiosity, there's nothing wrong with this, saying, Hey, why doesn't your kid talk? It's normalizing for them. When I say oh, some people learn to talk when they're young. Some people learn to talk when they're older. Some people don't speak with words, but everyone communicates. Would you like to see how he communicates? And the answer is always yes, when there's an iPad, because they're kids, and it's an iPad. And the advocacy of just normalizing our day to day lives, I believe is really making a difference.
Lindsay Crain
100% which also comes back to sharing your story, which doesn't have to be officially sharing your story, but it's allowing your child to communicate with as many different people right. It's it's it's being out in the community and not being an example, not trying to like educate people, right. But it's just being part of the world, which a lot of people for a long time tried to make sure wasn't happening. Yeah. So okay, I'd like to play a little game of fill in the blank. So let's, let's do it. All right. So there's a poem that many parents discover or that someone sends them right after our kids are diagnosed. This happens very frequently. It's called Welcome to Holland. And I think Donna's gonna share the chat in case somebody watching here hasn't heard of that. But when you first heard that poem, it made you feel, well, and I shouldn't say many parents have a very visceral reaction one way or another. So but when you first heard that poem, Kelley, it made you feel...
Kelley Coleman
Different than I feel about it now.
Lindsay Crain
I was just gonna say if you hear that poem today, you feel...
Kelley Coleman
When I first heard it, it felt like a relief. This is not just a fill in the blank. It felt like a relief. Now that I hear it, it feels incomplete. I do not have a strong visceral reaction against it. It just feels very incomplete.
Lindsay Crain
I think it's important for people to hear that because so many people act like here's your answer, right?
Kelley Coleman
There's no answers. Good luck, everybody.
Lindsay Crain
Kelley's book has little more answers than the poem.
Kelley Coleman
Actually my book has all the answers.
Lindsay Crain
All right. When someone tells you the universe only gives you what you can handle you say...
Kelley Coleman
Really?
Lindsay Crain
When a teacher tells you your son should be in a class with his peers and you realize that only means other kids with disabilities your reaction is...
Kelley Coleman
Who do you think his peers are? They're everybody.
Lindsay Crain
I feel most angry about my son when...
Kelley Coleman
I feel angry about my son when people discount him.
Lindsay Crain
Success as a parent looks like...
Kelley Coleman
Celebrating and fostering your child for exactly who they are.
Lindsay Crain
Failure is...
Kelley Coleman
Constant.
Lindsay Crain
The hardest thing about raising my children is...
Kelley Coleman
That there aren't enough hours in the day.
Lindsay Crain
The most incredible thing about raising my children is...
Kelley Coleman
That there aren't enough hours in the day.
Lindsay Crain
Inclusion means...
Kelley Coleman
Including everyone.
Lindsay Crain
The last time I showered was...
Kelley Coleman
Actually today, I knew this was coming, it had been a minute.
Lindsay Crain
And the number of times I've had ice cream for lunch in the past week is ...
Kelley Coleman
Twice.
Lindsay Crain
There we go.
Kelley Coleman
Like it's in the freezer, and you're like, I have to use it up because I have to clean out the freezer. And look, it's noon.
Lindsay Crain
Exactly. And now I want the raspberries sorbet that is waiting for me in the freezer, have to say. Um, yes.
Kelley Coleman
May I quickly acknowledge some great chats in the comments. Equity and equality is a huge discussion. Let's have that on the Facebook group. Because I know we're running out of time. And why does Welcome to Holland feel incomplete? My quick answer to me on why it now feels incomplete to me is because it feels like I need to accept a great thing. That it's all great, because Holland's awesome. And it doesn't, to me, acknowledge the fullness of the experience that there is different and hard in here. For us, I'll certainly cite the medical pieces and some of the ableism that's been directed at my son. And I think for me, I need to acknowledge that there is beauty in Holland. Also, there's a lot of hard stuff in Holland. And it's it's all the things.
Lindsay Crain
It's not easy to watch your child suffer, or be discriminated against, be left out, have a seizure, you know, the first seizure in the middle of an airplane ride while you're wondering if they're gonna die, you know, so there are things that are legitimately not Holland. Right?
Kelley Coleman
That is, I mean, can we get shirts that just say not Holland, and I need coffee? Don't look too hard, just buy me coffee.
Lindsay Crain
Exactly. Well, I want to end I want to end by, and thank you, Stephanie. Thank you for those really great questions. And I really, I know, Kelley, and I would both love to finish that discussion with you. Because this is the things that people you know, unless you're getting it like, people don't get it, right.
Kelley Coleman
Yeah, can we be best friends with you Stephanie, because she has some not kid friendly commentary that I love.
Lindsay Crain
Oh, yeah, there you go, Stephanie. Okay, there's our second T shirt right there. So I want to end by reading an excerpt from Rachel's letter. So she's one of your featured parents who wrote a letter to her younger self, upon hearing her child's diagnoses. And these letters, by the way, are probably some of my favorite parts of your book, you know, I want to hug and know, and drink wine, and spend time with all of the parents who wrote them. And it felt like just being with community. So Rachel wrote to herself, I want to walk backwards in time into that office and hold myself in my arms the way I would my daughter. I want to say to myself, cry, my love, don't hold this in. It will poison you. Let your heart break. True courage isn't holding yourself together. It's allowing yourself to fall apart. If you allow yourself to fall apart, you can rebuild yourself starting from this moment. So Kelley, for any parent listening to this who needs to rebuild themselves, what do you want to say to them?
Kelley Coleman
I want to say I'm crying as you're reading that. Recording this audio book was so hard because of these letters.
Lindsay Crain
Yes.
Kelley Coleman
You are going to hit a hard bottom, maybe over and over and over. Know that if you feel like you're in a bottomless pit, you might be in a pit. 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 of you've hit the bottom of the bottomless pit. Congratulations. Here's a hand. Let's do this together.
Lindsay Crain
I love it. Thank you, very importantly to end with, the book comes out tomorrow. So I am saying buy it for yourself, for your friends, share it in your groups. Kelley, where can we buy your book? I know we have an Amazon link that Donna's going to share in the chat. Where can where else can we find this book? What do we need to do?
Kelley Coleman
Find the book at all the place, Amazon, Barnes and Noble, your local bookseller. It's available for pre order for another seven hours, and then it is available to purchase immediately. If you do not need a copy for yourself, your local library, your pediatricians office, your children's hospital, social service workers, we need this book mostly in the hands of people who cannot afford it. It's 20 bucks. We need it in the hands of the people who can't afford to buy it, we need to equal the huge gap in access to information. If this is in every library, it changes the game.
Lindsay Crain
I love that. That's that's it's amazing. And actually, as you're saying that I'm thinking, Yeah, I'm gonna buy one for all the elementary, well, I'm in a smaller district. So but for all the elementary schools, all the middle school, high school, right to buy it for our school libraries. I know we started a parent resource library at my elementary school when we were there, that was full of books that could help parents, right. So you know, I think that that's, it's an awesome idea, Stephanie, who also likes to tell us, that she just bought it.
Kelley Coleman
Yes, thank you.
Lindsay Crain
But seriously, I love that that's that you're bringing that into the message of let's get this into as many hands as we can, especially for the people who are, you know, the most underserved, who are not getting any directions, they don't have access to so many of these resources.
Kelley Coleman
That is my biggest goal with the book 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 accesses to all of the available services and supports. And if we are able to get there with our own kids, or even close, we need to help others get there as well. And we need this book in Spanish. I saw in the chat. I am working hard and lobbying for that. It needs to be in Spanish yesterday, and I am I'm lobbying hard for that.
Lindsay Crain
Kelley, thank you. I know we are over. Thank you, everyone for sticking with us. Kelley, thank you so much for sharing your time, your wisdom and your truth with us. You sat down and you put into words what so many of us wish that we had on day two, and I say day two, because day one might have been a bit of a train wreck. But this whole book comes back to what we discussed in the beginning and throughout today, which is I'm not out to change my child, I'm out to change the world. Also want that on the t shirt. And for every person that works with our children, like we said, who really discovers who they are, what they need, what they love, all their possibilities. Our circle widens, awareness grows, acceptance takes root. And when it doesn't, we head into action. So Kelley, you do such a beautiful job of breaking all this down guiding, not judging, and reminding us that our children lead the way. And again, just cannot say enough, it doesn't mean every moment is easy or fun. We're not glossing over the hard because there's a lot of hard but you constantly remind us that the world needs to catch up. Despite the fact that every day we're told our kids need to. So frankly, no one told me that in the beginning. So your book is the message that I wish I would have had from the beginning.
Kelley Coleman
Thank you. That means everything.
Lindsay Crain
Truth. So as Kelley's book reminds us, time is a privilege, so do yourself a favor, support a book that the world needs to read. Again, not just those of us in the disability world, everyone. So after you read Kelley's book, if you want personalized guidance, a partner to walk beside you on this journey, our Undivided Navigators are ready to create a roadmap with you and for you because as we've said throughout this whole thing, we all deserve a partner. So Donna is going to share that link again if you want to learn how we can help support you and your family. Also, a couple quick announcements, don't miss our upcoming events. So this Thursday at 12pm right here on our Facebook page, Dr. Shannon Peake, researcher at the Center for Translational Neuroscience is talking about their free tech support for behavior needs. It's a great opportunity to take advantage of a free support that you can use in addition to whatever you already have in place. So tune in to find out how your family can get help. You can find RSVP info in the chat. And next week, Tuesday, March 19. We'll have another Facebook Live. We're gonna be talking to Undivided education advocate Lisa Carey, and we're gonna have fun. We're calling it flip the script on IEP conversations, they say you say. Kind of did a little bit, did a little bit of that today. But you know, all those fun things that you hear so many times and you start to wonder if they're true? Like, we don't do that here. Or your child will always be too far behind to be in Gen Ed. Yeah. So Lisa is going to tell us what we can say in response to those phrases that way too many of us keep hearing. And we're going to be asking parents to throw in their least favorite statements as well. So Lisa can address whatever we don't cover together. So we want you to be there, you can find the RSVP in the chat, we'd love to see you there. And for those of you near Los Angeles, Undivided and Kelley are going to be at the Abilities Expo this weekend. So we're gonna have our own booth. And then we're co sponsoring a sensory booth with Abundance Therapies Foundation for all the kiddos that need a little quiet time in all the excitement. So look for Undivided in booths 1103 and 1105. We'd love to say hello, and Kelley, where are you going to be? Where can people find you?
Kelley Coleman
I will be, definitely Friday, perhaps even longer through the weekend at the Abilities Expo at the Diversibility booth. Diversibility is a great group for disabled leaders and allies within the community. So come check us out and come say hi.
Lindsay Crain
Awesome. All right. And until then, stay connected. Join our parents only Facebook group, follow us on Instagram, Twitter, YouTube and LinkedIn. Thank you again to Kelley, congratulations on the book.
Kelley Coleman 5 Thank you for having me here.
Lindsay Crain
All right, our mission, just like Kelley's, it's to support you so your children can thrive. And we want you to thrive too. So we'll see you soon.
Kelley Coleman Thank you.
