Take Heart

Stuff They Don’t Tell Parents of Children with Disabilities: An Interview with Kelley Coleman

• Sara Clime and Kelley Coleman • Season 4 • Episode 162

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We are honored to welcome the inspiring Kelley Coleman to our podcast. Kelley shared her deeply personal journey as a parent of a child with multiple disabilities and how she ended up writing her book, "Everything No One Tells You About Parenting." Her authenticity and wisdom shine through in this interview. We discuss the lack of information parents are provided on diagnosis and how there’s not one specific place a parent can go to find the info and support they need. We talked about the crucial aspects of caregiving in navigating the healthcare system, accessing financial support, and our need for self-care that might be unconventional.


Ep. 162; March 19, 2024


Key Moments:
[7:03] Care plan for my dependent child brings victories
[15:52] State disability definitions and benefits
[26:12] Getting a second opinion is freeing
[39:57] Balancing rewards and guilt of parenting challenges
[44:05] Going home Googling things and crying

Resources:
https://www.kelleycoleman.com/
https://www.kelleycoleman.com/books
https://www.instagram.com/hellokelleycoleman/
https://www.facebook.com/kelley.coleman.56
https://emilypfreeman.com/next-right-thing-book/ 

If you enjoyed the show:

Find Sara at www.saraclime.com or on Instagram @saraclime

Kelley Coleman (00:00.046)
I know I talk a lot in my book in the parent caregiving chapter about get therapy, find your community, whatever it takes, because self -care isn't just take an afternoon off and go to the spa. Wouldn't that be great? 

Sara Clime
Wouldn't that be great? 

Kelley Coleman
That would solve everything. That actually might solve nothing and it might make you feel worse. Surprise! 

Sara Clime
Right. 

Kelley Coleman
Maybe it'll make you feel better. 

Sara Clime
There's a lot of bills for the self -care. 

Kelley Coleman
Yes. Thank you.

Sara Clime
Welcome to Take Heart, a podcast about creating space for connection, hope and joy as a mom to a child with disabilities or special needs. We want you to feel connected and encouraged as we navigate this messy, emotional, joyful life together. Hi, I'm Sarah Klein and you're listening to episode 162. Today I have the honor of speaking to our first time guest, Kelley Coleman. Kelley is a feature film development executive turned author who is active in the disability advocacy community.

She serves on committees for Children's Hospital Los Angeles, the Los Angeles Unified School District, and Canine Companions. Her book, Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports, stems from her own parenting experience, giving parents the tools to spend less time navigating the stuff and more time just loving their kids exactly as they are. She lives in Los Angeles with her husband, two children, and her son's service dog.

Sara Clime
Well, welcome to Take Heart, Kelley. We are so excited to have you here. 

Kelley Coleman
Thank you for having me. The community that you guys have built is so great. I've been loving going down the rabbit hole of listening to so many episodes of your show. 

Sara Clime
Good. Thank you so much. We have some awesome moms and caregivers, and we have more than caregivers listening. So I know that this is going to be about your book. We're going to talk about that.

Before we get started, I just wanted to say personally that this book has helped so much and I'm almost 12 years into this journey. And I read it thinking, oh my gosh, yeah, I really wish I would have had that at the beginning of my journey. But what I found was I was, I was like, oh, okay, it's empowering, I think, to caregivers. And that's what I love the most about this because I think when you start with this whole journey that you're on is you don't know what you don't know. 

Kelley Coleman (02:21.902)
Exactly. 

Sara Clime
And that's the scariest part. Yeah. And this was just like, hey, you might not know about therapies. Let's talk about this. So before we dive in, I want to tell our listeners, we talked about the title that was in your bio, but I wanted the chapters, the way that they're laid out, everything. Y 'all, you are going to love this. So, each chapter starts with, it's titled, “everything no one tells you about,” and then each chapter is about a different topic. So it's like getting comfortable with disability, about the diagnosis, working with your medical team, therapies, insurance and government benefits, individualized education programs, IEPs. If you're anything like me, you didn't know what IEP stood for until somebody said, do you have an IEP? School, disability rights, and advocacy, financial planning and future care plans, inclusion in your community, what this looks like for you as a parent caregiver. So this is so encompassing. In each chapter, it has letters from other parents that were moving. It literally brought me to tears several times because I thought, and because of this, I sat down and wrote a letter to myself on Diagnosis Day. It's going to make me just tear up because it was so moving that I thought I needed, I need to write Sara in 2012 and tell her that it will all be okay. So that is the power of this book y 'all. It is so good. And like I was telling Kelly, you know, we talked about like, you just, you don't know what you don't know when you start and this book helps you be like, oh, okay, great. So, you know, two, three years into the journey, you're gonna be like, okay, now I'm at the IEP level. What can I do? And this tells you what worked for you, what started, there's some questions at the end, you have templates. It's just brilliant. So with all of my gushing out of the way, I'm going to let you speak. So again, welcome to Take Heart, we're so glad you're here. And guys, there's going to be a link in our show notes directly to this book and to Kelly's website and her social media. 

Sara Clime (04:41.91)
So I love, so how do you actually, we're just gonna jump on in if that's okay, Kelly. 

Kelley Coleman
I love that you keep going, I'm loving listening to you. I'm like, wow, that book sounds great, I should get that book. 

Sara Clime
I know, it is so good. It's so good. I wanna talk about how to actually do all the paperwork and planning that no one knows how to do. We all need to know yesterday how to support our kiddos today. So, how do we break things down, learn the foundational information and put it to use rather than having it set out there in that cyber to-do list or your to-do list that have to-do lists, all the Post-it notes laying around. Can you break that down? 

Kelley Coleman
Yes. And as you're saying that, I'm looking at all of my Post-it notes thinking like, yes, Post-it notes, it's a thing. That is part of it. Well, this is something to back into that a little bit.

Something that you guys talk about on your podcast that is so important and is so under talked about is differentiating between being a parent and being a caregiver. And being a parent is and can be an all encompassing job. Being a caregiver is all of this additional stuff. The parenting stuff does not go away. It just gets magnified and buried in paperwork. And when I was writing this book, I didn't feel called to write a memoir. There are amazing memoirs out there. And I just felt like that wasn't my thing. But I'm weirdly good at organizing things and paperwork, which is a terrible superpower unless you have a kid with multiple disabilities like I do, and in which case it's handy. And the number one thing that I tell parents and I need to remind myself is you're right. There will always be this to-do list, all of this paperwork and things to do, things you need, boxes you need to check. Is it ever gonna be fun? Nope, this is never going to be fun to do this part of it, but we can make it easier on ourselves. We do get better at this stuff by doing it. And a big part of that is looking at the list and choosing one thing and saying, I do not have the mental capacity to do my son's future care plan today. .

Kelley Coleman (07:00.654)
I have a kid who will never live independently. So he has an extensive future care plan. And that didn't happen at a time when I was up all night for weeks or months with him and not sleeping and not doing the things. But during those times when I feel out of control and I feel like I need a handle on something, I look at my list and I say, what is not only urgent, but something where I can see the results and feel like I've gotten a victory. And sometime that is calling my insurance plan and saying, “You denied this, I'm going to appeal it. What exactly do you need in the appeal in order to make this happen?” And then I get a check in the mail and a check in the mail always feels like a victory. So tackle one thing, pick one thing where you will see a victory and often that's chasing down a check because I love getting money in the mail. 

Sara Clime
It is. It's always great. It is. Doesn't happen often enough. 

Kelley Coleman
No. Exactly. Right there with you. Yeah. 

Sara Clime
Yeah. And I think that that's what I really liked about your book is that you had at the end of your chapters, you know, things, questions to ask yourself and where to start. And I think it's so important that one of, one of my favorite books is by author Emily P. Freeman, and she wrote, The Next Right Thing, and I always tell myself what is the next right thing and it's so important to remember that what can I do now? I'm not a horrible mom for not thinking about his future care plan today. Yes. And I I learned very early my son's in elementary school. I don't have to think about graduation just yet from high school. It is okay. You can you can go at your own pace.  And don't look at Sally on social media because you're not seeing everything behind what Sally's struggling with either. So that's great. Thank you. 

So, did you always want to write this book? 

Kelley Coleman
No, I swore I would never write this book for many years. I love that you asked that because I'm sure everyone has told you for years, you should write a book. And you did write a book with your partners, which is so great.

Kelley Coleman (09:21.774)
You know, people were telling me, oh, you should write a book about all of this. And I was like, no, my professional background is in talking animal movies and fiction. And I'm like, oh my gosh, that just sounds dreadful to write about this. And I was, had absolutely decided I would never write this until one morning up with seizures and vomiting, my son, not me.

He has multiple disabilities, including a yet undiagnosed genetic syndrome and within that autism, epilepsy, cerebral palsy, cortical vision impairment, feeding tube microcephaly, sensory, like I don't even remember all right now. He's an overachiever. He checks a lot of boxes. So after just a rough night when we had been in a good patch and we're just thrown right back into it, he loves going to therapy.

So, he was good. He wanted to get out of the house. So, I took him to therapy and I said, “You know, take it easy. He had a long night, but he really wanted to come here,” and ran out of the car with a big smile. I said, “I'll be at the coffee shop next door.” So I sat down and I was like, I'm going to write and there's a book that I'm developing. This is going to be great. And I sat down and I had on my giant sunglasses and I just started to cry because it was just too much and too overwhelming and that feeling of I can be thrown back into this place at any point and I need to be able to put everything on hold. And so I was sitting there and I was like, just write something, ‘cause I'm literally like crying in a Starbucks and I'm just like, oh man, I gotta look busy. So I just started writing what is basically now the introduction of my book.

And I realized my life as a caregiver, I can't separate from all the other things because it crosses over into everything and always will for the rest of my life. And this seemed like getting back to the point of the bottomless pit that I felt like I was in when I was at the beginning of this and just this horrible feeling that I was thrown back into of like, I am just inadequate for all of this.

Kelley Coleman (11:39.438)
And how can we help other caregivers to not feel that way? This is a full -time, more than full -time job, often a forever job. And there's no training, there's no manual. There's just like, hey, here you go. How many jobs is there literally no training for? 

Sara Clime
I told a friend of mine that it's not even being thrown in the deep end. I don't even think that analogy works. It's like being on a barge in the middle of the ocean and somebody pushing you off of it and saying, “Swim and find yourself back to shore.” 

Kelley Coleman
Oh, by the way, and they're not even saying swim. They're like, go do a thing. But what thing do I do to keep myself from drowning? I don't know. I've never learned this. But it is, it was, it became very clear that this was the book I wanted to write. And I was literally found myself Googling, “how to write a nonfiction book proposal,” and within three months was negotiating an offer from a major publisher. So, it was very clearly this was the book I was meant to write at this point in time. And my great hope is that this gets into the hands not only of the caregivers who need it, but into the medical professionals and educators and social service workers because there are so many parents who don't know today that they're going to need this book tomorrow. And there are people who will get a diagnosis tomorrow morning and are gonna, I'm ready to cry, and are going to feel just like we felt. And if there was information being delivered along with the diagnosis of, your diagnosis is information, you have a new role as a caregiver and here is a foundation to start instead of go home, Google and cry, see ya, which is basically what we're told, and I love that you've talked about, like you didn't even know how to spell the name of your son's syndrome. It's considered a syndrome, right? You didn't even know how to spell it to Google it. And that right there encapsulates what it is like to be thrown into this to literally not even know how to spell the thing. That is a problem because there's no training. 

Kelley Coleman (13:59.086)
And so my great hope is that this book is like our on the job training. It says, as you mentioned, here's what works for me. Here are the questions to ask yourself and here's where to start because this is how to build your journey. And all of our journeys are different, but there is so much overlap. Nobody likes to call their insurance company. Nobody likes sitting through six hour IEP meetings, which I've done, but we're all reinventing the same wheels and it's exhausting. 

Sara Clime
It is, it is. One of the things I noticed too about very early on in your book, I believe it's even in the first chapter because it was about the diagnosis, is for anyone listening who's saying, I don't have a diagnosis, you even touch on that. And I love that you said the diagnosis is information because that's really, if you can, I'm not saying there's not emotion, there's going to be emotions, there's all of that behind it.

But I think once you get to the point where you can say, okay, this is information, how am I going to take it in? How it needs to be inputted and then how am I going to output it? And when you break it down like that, it's wonderful. And then for those that don't have a diagnosis, you still have a good starting point. There are still things that you can do to make life simpler. It might not be easier. And I know that's probably contradictory.

And Carrie, my co -host, is going to be like, that's not the definition of either one of those. 

Kelley Coleman
It currently makes no sense and completely perfect sense because I'm like, yes, that right there. Absolutely. And our son not having an overall diagnosis for all of his subdiagnoses, there's the genetics. Something, he might literally be the only one in the world with his thing. And we've done all the tests. We are at a point, he's 10 years old, a diagnosis if it ever were to come would be welcome because it could potentially connect us with a community of others. And even if you don't have a diagnosis, you can still find out within your state how your state defines disability because your child without a diagnosis perhaps can qualify for disability benefits within your state if you understand how your state defines disability. .

Kelley Coleman (16:21.166)
And even before we had any diagnosis for our son, we were able to access benefits because of our state's criteria. And if you don't know where to begin with that, every state has a parent training and information center. There's your department of developmental services. There are the resources out there that we're right there with you if you don't have a diagnosis. 

Sara Clime
Yeah. And even if, you know, whenever we received our son's diagnosis, here's some information on a free camp. He is terminal and we'll see you in six months. And that was what was given to us. And there was like, I'm a, I'm an organizer by trade. And so I do systems and all of that myself. And I thought there has to be something more I could do. I was never naive enough to think, “Oh, I'm going to cure this. I'm going to find something that nobody has found in the past 500 years.” But, I wanted to be an action. I was like, okay, I'm a parent and the parent kicked in. What can I do as his mom to make life better? And then how can I step into that caregiving role simultaneously while trying to protect my child and give him the best life? And that's one of the things about this book is it's empowering for parents and caregivers to at least know, okay, there's all I need to do is put one step forward.

You mentioned your introduction, you had set down one of the things and I laughed out loud when in your introduction, you said information given is the tip of a gigantic iceberg. And I laughed because I thought, well, at least we're not like the Titanic. We at least know there's the iceberg there. 

Kelley Coleman
Yes. 

Sara Clime
And I laughed about it because I thought back 10 years ago, I hit the iceberg. I had no idea that iceberg was even there. And this is like that big beacon that's saying, okay, there's a lot more that, you know, that this book isn't talking about, but we're going to give you the basics so you can get started. And like you said, knowing even without a diagnosis, you can go to state agencies as opposed to just having to be like, okay, well, I'm going to Google and hope I Google the right thing. 


Kelley Coleman (18:38.734)
Yes. And you absolutely will Google things that will terrify you and that will be wrong. That will be doom and gloom stories. And it is endless. And that's also why I felt so strongly about writing a book because a book feels manageable because it is not endless. There are only 304 or five pages in this book. So there is an endpoint. And when you are feeling so out of control, which is how all of us feel, especially at the beginning of this journey, to be able to say, there is information on the diagnosis, on services, on school, on insurance, like wherever you are, even on disability rights, and say, I am going to use information to figure out what I can control.

And I can educate myself on those things. I cannot, you know, quote unquote, fix my child. I'm right there with you. There's something genetic that is scientifically impossible, but what can I control? I can control my knowledge of disability rights and what he is entitled to under the law. I can control being sure he is set up to go from early childhood into the school system. You know, all of these building blocks where I can have some agency and feel empowered on his journey rather than just feeling inadequate and feeling like not only do I have no idea how to be a caregiver, but then you feel like you are failing as a parent because even getting basic needs met can be really challenging. And, you know, we had a kid who, um, he has had a feeding tube for most of his life because he literally was eating almost nothing as a baby. And, you know, talk about feeling inadequate as a parent. And you're like, I just want you to eat and poop and sleep and have fabulous hair. And like, you have fabulous hair. So that's great. But what about all the rest of this? Right? 

Sara Clime (20:57.314)
Yeah. Yeah. And it's the demystifying all of those things that and then simultaneously also empowering you to know, I have, I can do something. Because I think as moms, we're all doers. And so we're not like, I love how you said, I don't need to fix my child. And that's not what this is about. It is about empowering you as a caregiver to where you can set up the best life for yourself and your child and your family. And that's, and I think one of the things that I love about this book too is you don't have to read it from cover to cover. And it is, if you are struggling, like if you're anything like me and your diagnosis is over a decade ago, you're like, well, I can skip that diagnosis part. Now I didn't because I knew I was going to be interviewing you and I was like, well, I'm going to need to read that chapter. And I still found so much information in there. And if nothing else, I felt that I'm not alone. This is so common the way I'm feeling. And that you can, when you get to the point with IEPs, pick up the book and read about the IEP right now. If you want to skim it right now, just because you want to, that's fine. But if you don't feel like you can, like you said, you can't do the future, you know, your child's future care plan, don't do it right now. You can't read the chapter on IEP, don't do it right now. But know it's there. So whenever you first hear, we need to set up an IEP meeting.

Where do I start? I'm gonna pick up this book. And that's the beauty about it. 

Kelley Coleman
Exactly. And also, there are so many parents who, you know, we all are starting from ground zero with all of this. I think even parents who are coming into this as medical professionals, as educators, are still like, whoa, I didn't know what this was all about. Depending on your demographic, you are more likely to be written off. If English is not your first language, if there is, you know, language disparity, income disparity. If you are of a different race than the people running that IEP, this is all very real. And so if any of us can go in with a basic foundation of knowledge to ask the right questions that will get us there and to even be emboldened to say to a team, okay, you just said this acronym. I don't know what that means. Please back up. Please explain to me what that means.

Kelley Coleman (23:20.686)
I need to be an equal part of the team here. And I think having the knowledge will give you that. And also you spoke to this feeling of aloneness, which is so infuriating because like, look at your podcast, look at your book. We are all out there, but it's like, we are all islands in the beginning. Because none of this is ever talked about. Everyone is so afraid of disability.

Sara Clime
Right. 

Kelley Coleman
Then nobody ever talks about it until you're like, throw you in the water. Good luck. Right. On a mission, I feel every single, the parent training classes at the hospital, the OBGYNs, like everybody, needs to be having a super simple and factual and not scary conversation with parents. If in these hospital training classes, they were to very simply say, okay, we're about to learn how to diaper this baby doll in front of you, which you could probably figure out on your own, but you're here, so let's do this. Before we jump into that, we wanted to let you know that statistically speaking, one in 33 babies, according to the CDC, is born with a birth defect. I hate the word defect, but. 

Sara Clime
It is what it is, yeah.

Kelley Coleman
It is what it is. One in six, approximately one in six children have a developmental disability. There are more than three million disabled children in the United States. Statistically speaking, that's going to be somebody in this room. And we are preparing you for that knowledge. It is not scary information because there are resources, there are communities, you are not alone. If this is you, come to us.

We have resources now, let's diaper that baby. 

Sara Clime
Yes, absolutely. 

Kelley Coleman
That literally is it because that could take such a chunk out of the feeling of aloneness. If it was just addressed that statistically speaking, you or someone close to you is going to have a child with disability or you yourself are or will become disabled. And if we can stop being so scared of talking about disability.

Sara Clime (25:32.238)
Right. 

Kelley Coleman
Because it wouldn't be so scary and isolating. 

Sara Clime
Absolutely. Because I didn't know anybody really with disability. I mean, I knew people, but nobody close to me that I could see it played out in daily life and how it impacted daily life. I mean, I knew intellectually it did, but I didn't see it firsthand. And just knowing, oh, that is really common.

And I don't want to think about that right now, but I guarantee you that would have stuck with me. You know, my, my son, they, when he was born, they said, well, you have a healthy baby boy, mom. And I remember when I got that diagnosis, I was so mad at that doctor. Eight years later, I was like, he lied. He lied. But then I thought if they would have said, this is more common than, you know, we have resources come back to us. That's what it would have stood out.

That's what I would have been like, okay, I know I stuck my head in the sand about that, but now I need to pull my head back out of the sand and I know where at least to go. But I think that that's one of the things that you're providing is a place for people to go. 

So what advice, speaking of the parents who are just starting, what advice would you give parents starting their journey with a disabled child at the very beginning? 

Kelley Coleman
The one of this is gonna make me cry. Even a decade in, the fact that talking about the beginning of my journey still makes me cry says a lot. And it is a lot. My kids both are amazing, and this is a lot. In the beginning, it was so hard. I had no frame of reference for disability. So of course, I was hearing all these negative messages of everybody saying how horrible this is, and I'm so sorry, and basically everyone telling me that my kid is a tragedy. Like, he's not a tragedy. He's awesome and like he loves airplanes. And I felt miserable and I thought that feeling was forever. Because I didn't know anything else and I was not getting any other information that disability is just fine and that you will be fine, your family will be fine, your son. Like, you know who doesn't care that he's disabled? Him. Like, he's good.

Kelley Coleman (27:51.694)
Um, and I thought that horrible feeling was forever. And I wish someone had told me you will feel better. That was actually the original title of this book. Cause I was like, I wish I had that on my nightstand. Not saying don't feel this way. Not saying, Oh, silver linings. Nope. Don't need to hear any of that. All I need to hear is to be validated that yeah, this is how you're feeling. 

Sara Clime
It stinks.
Kelley Coleman
But it's not forever. And you will feel better. And I have come to learn and it's taken me a decade that the thing that connects falling down that bottomless pit and being miserable and just like crying on the couch in your sweats and like eating cereal out of the box, that and where I am now, oops, here's where I cry, is loving my kid for exactly who he is.

And yes, everybody loves their baby and they're beautiful and they're cute and they got the big cheeks and like all the things. But it's so scary when everyone is telling you what a tragedy this is and you're not hearing anything else and nobody's happy for you and it just feels horrible. And you're like, I love this baby, but I'm taking in all these messages of how horrible this is. When you get to know your child as a person, and you will fall in love with them not just because they're an adorable baby with fantastic chubby cheeks, but because they love bubbles and laugh at farts and think the Simpsons is hilarious and like all of these things. Like you love this person. And that changes everything. It doesn't make the paperwork fun. It doesn't make all the appointments stop suddenly being overwhelming, but it makes it doable and sustainable. And that's what we are working towards as forever caregivers, or even if it's a temporary caregiving situation. We are working towards how can this be sustainable in my life? 

Kelley Coleman (30:14.126)
And for some of us, it is all encompassing for days, weeks, months, years, decades, and it feels like this is all there is. But I think if we can get a handle on all of the stuff, we find a way to make it sustainable within our lives and give structure to our lives and ideally not be all that there is in our lives. And sometimes we do just get to laugh and have fun with our kids. And it will come. The laughing and having fun will come. 

Sara Clime
Yeah. No, that's beautiful. It's beautiful. And it is, you know, one of the things that we like to talk about is the emotions are there and that's fine. You can think, I mean, you know, this caregiving gig isn't easy. It's not. And it downright stinks sometimes. 

Kelley Coleman
It does stink sometimes. And most of us, unless we have chosen to adopt a child who we knew was disabled, most of us are thrown into this full -time job not having chosen it. And I think that's also something we struggle with is I didn't choose this life and now I have no choice but to make the most of it. Many people like me leave careers because you cannot work fulltime outside of the home because the home is a fulltime job.

You cannot work full time outside of the home or even part time or even have a schedule when the caregiving needs are so great. So there is a lot to reconcile. I know I talk a lot in my book about in the parent caregiving chapter about like get therapy, find your community, whatever it takes because self care isn't just take an afternoon off and go to the spa. Like, wouldn't that be great? 

Sara Clime
Wouldn't that be great? 

Kelley Coleman
Yeah. That would solve everything that actually might solve nothing and it might make you feel worse. Surprise! Right. Maybe it'll make you feel better. 

Sara Clime
There's a lot of bills for the self -care. Yeah. 

Kelley Coleman
Yes! Thank you. And sometimes the self -care is connecting with other people who are all prepping for the same IEP meeting, who are all having the same questions in the same meetings with lawyers and advocates and crossing things off the list. And that's okay. 

Kelley Coleman (32:40.27)
And finding out, what makes you feel better, feel okay. It might be the spa day for you. It might be checking things off the list and owning whatever makes this sustainable for you. That's your thing and run with it. Right. 

Sara Clime
Yeah. And sometimes it could very well be the first step to self care. If you were like, I don't have time by myself. I have no finances because there are times where it's just like the entire world is closing in on you and so selfcare seems so far-fetched that you wouldn't even know where to begin. Well, I could go for a massage if I had the money, and even if I had the money, my child would be sitting there doing whatever with me. So, that's not going to be very relaxing. But maybe it is purchasing this book, setting up some simple systems that you've already laid out. I mean, like, okay, I'm going to copy that. Because you even say, copy it. And if you have some, share them with me. And that's the great thing, because we are all one big team and it's about sharing and connecting. And if this opens up an extra five minutes a day for you just to be like, okay, I don't have to chug my water. I get to slowly drink it for five minutes. Maybe that's a starting point. 

Kelley Coleman
Oh my goodness. Yes. And in addition to that, there are so many parent caregivers and families who cannot afford 19 or $20 for a book.

And that's okay. And there is no shame in that. Contact your local library and request them to carry this book. And you can, you do not need to buy this book ever. You can check it out for free as many times as you want. You can sit there and make your notes. This needs to be a resource that is available for free to everyone. And I'm on a mission to get it in every single library because rich people's kids get more stuff and that's not okay because of all the advantages they have. 

Sara Clime
I love that because when you just said the library that reminded me, I do, I need to call. I will call our library and make sure because that is, it is so good and you're right. Sometimes it's just, you don't have any extra anything to provide other than to just wake up and care and do be a caregiver.

Sara Clime (35:02.958)
But eventually that one step, that one thing that you can simplify is going to be a domino effect. And so I would encourage anybody that's like, I just, I don't see me even having five minutes to drink water in the kitchen. I just don't see it. I get it. And it's not going to seem like that right now, but maybe it's doing something and having 20 seconds to walk to the kitchen right now. And then in a month from now you get to do something else. It will happen. And I always like to tell, um, one of the things that I say is that I realized very early on in our journey with my son is I was turning his debilitating diagnosis into a debilitating life for him and for my entire family. And it finally was like, it's up to me to not make this diagnosis debilitating. They might attach debilitating or some diagnoses out there, like I'm sure you've heard, they're not thriving or any of those terms that you just, or traumatic or whatever, or suffering, anything, all of those negative terms, that doesn't mean that has to apply to life. And it's up to us, and if anybody can do it, it's the moms, mom-caregivers. Anybody can turn that around. Cause I didn't even, I didn't want to do the, my son's care notebook. I'm like, this shouldn't be what a mom has to do.

And you're right. It takes forever. You're right. A mom shouldn't have to do that. But a caregiver does. 

Kelley Coleman
A caregiver does. 

Sara Clime
And we can accept it or we can make it more difficult. And there's just systems that you can put in place. And that's, I mean, that's the tagline of your book is your guide to the essential system services and supports. 

Kelley Coleman
Just having the mental space to figure out like, man, I'm overwhelmed with this. Like, what is a system I can put in place that will make this easier tomorrow, or so that I don't have to figure this out again? Or you know what, my insurance plan year just began. I can call my insurance company and say like, “Hey, were there any changes since last year?,” which is super boring. But then you know, if you're like, oh, there are fewer speech therapy sessions covered, or maybe there are more sessions covered, or have there been changes that will impact you?

Kelley Coleman (37:28.718)
And a 15 minute phone call can end up saving you a ton of money. And it can also save you time in the long run, because if you suddenly go over on your maximum speech therapy sessions, but if only you had had a pre -authorization, then you could have, and then rather than chasing everything and reacting to everything, you actually can be proactive. And even, I know for years, I felt like I had no time and reading a book. What's that? No way.

But this is available on audiobook. I was getting free audiobooks from my library and listening to them while I was measuring out food for feeding tube stuff. Audiobooks count. Like figure out those tiny little ways that you can feel like you have some agency and some control, because those tiny little things really do add up. 

Sara Clime
Right, right. And I would also like to just, one of the things that I had such a hard time, with and going back to the caregiving versus parenting, I, this is just a passion of mine because if I would have known the distinction, if I would have understood this distinction between the two, there would have been a lot less guilt and shame around it. Um, because I thought as a mom, I shouldn't view taking care of my child as a job. Well, as a mom, you don't, it's not sometimes it is, let's be honest, but, but with day first, I mean, it's always a job, but this is a completely different beast, completely, it's not even in the same department. You might walk by the same people in the office every day, but it is a different, you're going to a different department. And that's how I had to look at it is I'm on the same floor and we might have the same boss, which is my son, but it's two different job responsibilities. And one of them is going to just stink.

I don't want in January to have to call the insurance company and to see what kind of changes there are or to ask certain questions before a doctor's appointment, but it is what it is. And that is, and making that distinction, I think, takes a lot of the guilt. And for me, at least, that was half the battle, is removing the guilt. 

Kelley Coleman 
Yes. Yes. And you guys have spoken so eloquently on your show about guilt and about shame and all of these messy emotions.

Kelley Coleman (39:52.238)
And we are not saying that caregiving is not without rewards. 

Sara Clime
Oh, absolutely not. 

Kelley Coleman
In my case, the rewards have been tremendous. You know, there is so much you can do and there is so much that is rewarding. But I do feel guilty when I can't go to something for one of my kids because I'm shuttling the other kid around to therapy. I do feel, I feel it so deeply when you guys talk on your podcast about vacations and how that looks very different. And I was laughing out loud the other day, I was walking and listening to your podcast and talking about airplanes and holding your breath and hoping it goes okay. We've done that before and we're not gonna do that again for a while. That was an experience. There is the shame of, you know, everybody's still looking and the staring and the this and that, and I'm like, that's just my kid. This is just Thursday. Because we feel like we are constantly educating the world about disability. And it also can feel exhausting. In our case, our son's disability is visible. You can tell by looking at him, he's got something going on. And he is loud and he is proud and he is all over the place in his wonderful way, but every time we leave the house, we are on display and you can't not see us. You can't not hear us. And it is fortunately almost always joyful, his very loud expressions, but I am proud that we can be the people to be carrying the flag of the message that disability is not tragic. But sometimes, I just want to like go get some baby carrots or a latte or whatever it is and just like go out and come back and not have to bring the diaper bag and the feeding tube supplies and the emergency meds and the service dog who's awesome. But like it's just, it's a lot of stuff. 

Sara Clime (42:18.734)
It is a lot of stuff. It is a lot of stuff. I think going back to your book is there is so much we need to know and do and your book provides that initial empowerment of here's what I wish somebody would have told me and here's a little bit about everything and it at least empowers you to know what. Yeah, okay, so I never thought about that. I mean, and I even 10 years into it, there were a few things where I was like, oh, that's a really good idea. And that's the beauty I think of our community too is, you know, said being a caregiver, it's not all tragic and it's not. There are times where I truly feel sorry for some women who don't get to experience the unbridled joy that I do with my son. There is, I have an almost 20 year old who will tell me 50 times a day, I love you. He will want to hold my hand during the most weird times. Like it's, and that is, and I know not everybody, there's people here listening that I know that you have some behavioral, children with behavioral issues and that's not it as well. But what I hope is that you have found a part of caregiving that you recognize how strong you are and how, and I hope if anything, you find a community that you would have found, I would have never found Amy and Carrie without that. I would never have met you and been able to do this wonderful interview without that.

So there are things that just changing that viewpoint, I believe. One final question, and what mistakes have you made on your parenting journey or your caregiving journey that maybe our listeners can learn from? 

Kelley Coleman
Oh my goodness. By the way, if this was the first question, we would have just spent our whole session just talking about all my mistakes. 

Sara Clime
(Laughing) Just give me one or two.

Kelley Coleman
There are so many. Mistake number one, going home, Googling and crying. Because when you Google things, you will find horrible. So just like the endless searching we need to do, sticking with a therapist or a therapy after that voice in your head is telling you, nope, this is not the right one.

Kelley Coleman (44:28.558)
I don't believe we've ever done anything that was traumatic for my son, but there have been plenty of people that we knew this was not the right fit. We've never regretted parting ways or flat out firing a provider of any sort, working with our child. There are second opinions that I wish I would have gotten faster, but it was like, well, the doctors, nope, just get the second opinion if you want it.

Sara Clime
In your book, I don't want to, I'm sorry, I don't mean to, yes, I do mean to interrupt. I don't mean to interrupt, but be quiet. (Laughing) In your book, you were talking about that and you had said that second opinions are like uncovering stones and I'm completely paraphrasing and probably butchering it, but nobody would ever go back and say, man, I wish I wouldn't have done so much or tried to learn more or tried to do more for my child. So yes, that's second opinion, third opinion, and go for it. I love that. Sorry. 

Kelley Coleman
Absolutely. And the book, I know this is great. You keep going. You're good at this. You should host a podcast. In the book, I interviewed over 40 experts. And one of them is in the chapter about working with your medical team. There are doctors, there's a nurse in there. And one of the doctors does talk a lot about that in the full interviews are all in the appendix about don't ever be afraid of stepping on your doctor's ego by seeking a second opinion. And this is a high level specialist who is saying like, seek that second opinion. Feel like you are being heard. You can ask questions. You are not being dismissed. If you feel like your doctor is gaslighting you. These are all red flags, and be bold enough to listen to that voice in your head. We were told by an amazing high-level neurologist, epileptologist, that our son would never have seizures because he didn't fit the profile, until a year or two later when we were calling 911 for our son having a really frightening seizure at home.

Kelley Coleman (46:47.086)
And I just kept thinking, I really respect this doctor, but he was wrong. And I need to remember to really stop second guessing myself and checking all the boxes, ‘cause like you said, and I say in the book, I'm never going to look back and be like, “Oh, I did a little too much for my kid.” No. 

Sara Clime
Well, another thing you say too in your book too, is that you will be wrong as caregivers. We will make the wrong decision, and so there are times where I thought, well, I'm going to make this decision. I am going to listen to myself and I know, and I was not right. I was wrong. And everything, you know, you can get back from that too. So, but that doesn't discount your inner voice. Still listen to it. 

Kelley Coleman
Absolutely. Everything you can learn from anything. So, yes. And all of us, you know, even beyond caregiving and beyond our kids, if we just own the fact that we can say, “I feel differently about this. I am acting differently about this now that I have new or different information,” is a great life skill in all areas and we do the best with the information we have. And then when we get new information, we are foolish if we do not expand our way of thinking. And if I kept digging in my heels and saying, my kid's not a kid who's ever going to have seizures, I would be very wrong because we have been dealing with those for years now. We need to be, we need to do the best we can with the information we have. And that includes, if we're wrong, say we're wrong and talk about it with the other parents in these circles. Listen to disabled individuals who had lived through this firsthand. So many of us and most of us parents who are parenting kids with disabilities, we are not disabled ourselves.

So, we're just making this up. And sometimes we do a great job and other times, me included, we do terribly. 

Sara Clime
We flub it up. It's okay. 

Kelley Coleman
We do. And that's because that's what humans do. And we can learn from people with lived experience and we can always do better. And that's okay. 

Sara Clime
Yeah. Yeah. And if you make a mistake and, um, you called her aunt Sally or aunt Susie in your book.

Kelley Coleman 
Aunt Sally. Yeah.

Sara Clime (49:13.966)
You don't want to listen to Aunt Sally? That's a part of the book. You'll have to, I laughed at that one too. But you know, if you're getting unsolicited advice from Aunt Sally, don't listen to Aunt Sally. It's okay. They don't know any, they definitely don't know more than you do. 

Kelley Coleman
No, my, uh, my go-to, I don't think I say this in the book, but my go-to, cause we get a lot of unsolicited advice about what we should do with our kid or this supplement or this therapy or, you know, maybe if you fed him something he liked, then he wouldn't need a feeding tube right? Is I just look at people and I say, “That's a great idea”. And I walk away because people are so desperate to be like, I don't know what to say. So I'm going to say a thing and like, I get it, but you are unhelpful Aunt Sally. So not at all if you are not a neurologist. 

Sara Clime
So I do a lot of, “that's a great idea,” and just walk away. In one of my podcasts I talk about that I had somebody, (you know my son has a form of muscular dystrophy), and he said, have you tried? He sold this type of muscle powder or whatever. It was a workout powder, but he was a sales associate for this company. He goes, have you tried this muscle milk? I'm like, oh. I go, “No, no, but I'll give it a gander.” 

Kelley Coleman
By the way, it's just so easy to cure that. 

Sara Clime
I am sure the scientists for the past 400 years have not tried that. 

Kelley Coleman
Let me go ahead and do that.

Sara Clime
We have an entire podcast of dumb people, you know, dumb things people say. I don't think that's what it's titled. I'm paraphrasing. It is really what it is. Yep. 

Kelley Coleman
There's a bingo card of that in my book. 

Sara Clime
Well, this has been, I could sit here and talk forever and unfortunately we're going to have to wrap it up. But thank you so much for being on the podcast and thank you for this book. Kelly, tell us how we can, how everybody can find you. Tell us all the things. 

Kelley Coleman
Yes. So, my website is kellykohlmann .com and that's K -E -L -L -E -Y, Coleman .com. And on there are my links to social media, links to the book, and really look forward to connecting with loads of people through this book. And hopefully there will be many revisions and other books in the series and workshops and lots of great things to come.

Sara Clime (51:34.318)
Well, I know it's just going to do wonders and I think that it is a definite blessing. If it is something that people should, that I wish I would have had 10 years ago and I still find absolute value in it right now, then I know I'm going to find absolute value in 10 years. So I just think it's great. And I know stepping into this type of thing where you know, you're going to have to talk about this probably for the rest of your life is it's no small thing and it is difficult. And it's emotional and you had to be very brave to write it. So I appreciate that. Thank you so much. 

Kelley Coleman
And thank you for all that you guys do. You really have a pretty remarkable show that is equal parts matter of fact and so empathetic and authentic and all the wonderful things. So, thank you for the community you've created. 

Sara Clime
And thank you again for taking the time to be with us today, Kelley. Thank you so much for listening to this week's episode.

After listening today, what is your next step? What is your next best thing you can do for your child and yourself? How can we at Take Heart help you with that? Let us know. You can find us at takeheartspecialmoms on Instagram and Facebook. You can email or leave us a comment on our website at takeheartspecialmoms .com. We love hearing from you guys.