Life Lessons and Label Makers: What No One Tells You About Parenting a Disabled Child, with Kelley Coleman

Jessica Fein: Welcome. I'm Jessica Fein, and this is the “I Don’t Know How You Do It” podcast where we talk to people whose lives seem unimaginable from the outside and dive into how they're able to do things that look undoable. I’m so glad you're joining me on this journey, and I hope you enjoy the conversation. 

Welcome back to the show. Before we get into today's episode, I need to share something with you. We are days away from the release of my book, Breath Taking: A Memoir of Family, Dreams, and Broken Genes, which means you can go to Barnes Noble or Amazon or even better your favorite indie bookstore and order the book and you will have it next week.

Writing and publishing a book takes years and I can't believe my book is finally going to be out [00:01:00] in the world. My guest today, Kelley Coleman, knows all of this firsthand. Her new book. Everything No One Tells You About Parenting a Disabled Child is the book I wish I'd had when I was thrown into complex medical caregiving and parenting.

Kelley wished she'd had a guidebook too, one that felt like it was written by a best friend. So that's what she wrote. Kelley has so so much goodness to share about the language around disability, who we need to look to for guidance when we don't know what to do or say, and even the importance of a supportive couch and a huge jar of Nutella.

Before she was an author and advocate, Kelley was a feature film development executive. She lives in Los Angeles with her husband, two boys, and her son's trusty service dog. Without further ado, I bring you Kelley Coleman. Welcome to the show, Kelley. 

Kelley Coleman: Thank you is so much. for having me and for writing your book and all the goodness that you're putting out in the world.

Jessica Fein: Well, thank you. I have to tell you, the only thing that upset me [00:02:00] deeply when reading your book was that it didn't exist when I really needed it. Because this book is a Bible. And I just feel like for anybody listening who is in this boat of raising a child, not only with disabilities, I must say, but even with any kind of special needs.

Go get this book because it is a game changer. 

Kelley Coleman: Thank you. I wish I'd had this a decade ago, and all of these like, templates and checklists and things have been living on my computer for a very long time, and you know, I'll send them to a friend, and I'm just so passionate about all of us, like, we've got to stop reinventing all these exact same wheels.

Because that's what all of us do every single time. And I think we can fundamentally change how parents enter into this world with actual usable knowledge and information, rather than just floundering for a decade, which is what I've done. That's a waste of time and money and [00:03:00] energy and all the things.

Jessica Fein: You should see the binders I have that I made and like you color coded spreadsheets, but I didn't know what I was doing. I didn't know what I didn't know. So in my case, every tool that I fumbled together would be incorrect. Afterwards, like, Oh my God, I need to have a list of all the care providers or whatever the thing was.

So the idea of having a book that can say you will need a list of all the care providers and here's the template for that. It's like the biggest gift I could imagine. 

Kelley Coleman: Thank you. I wanted it to be something that. Again, it saves us that time and rather than scrambling after the fact and like I've got the binders and the post it notes and the label maker and like all the things.

Jessica Fein: I love the label maker. That was just the, was the best part of the whole thing. 

Kelley Coleman: Oh my gosh. I know when I was like, I need a label maker. I'm treating myself to a label maker. It was like the clouds cleared and I'm like, I am exhausted. I haven't slept. I feel [00:04:00] inadequate. I'm cleaning vomit out of my hair, but I can make a label.

Okay. But I got a label maker.

Jessica Fein: I mean, I have to tell you, I even wrote about the label maker in my memoir because I was just like, the label maker, that's what it all comes down to. 

Kelley Coleman: Oh my gosh, it is such a thing. And also, I think it's no accident that talking to you feels like I've known you forever, because it's like, we get that you can lean into all of the things and the hard and acknowledge that it's hard and the fun and the emotion.

And that all of this, whether it's. Your memoir, my book of, like, how the heck to do this, it all needs to feel like a conversation with a human. When you feel like you're really connecting with another human, that's the stuff that really sticks with me and with this book. I've had so many people say, like, is it weird that the insurance chapter is funny?

And I'm like, yes, it's weird and awesome because we can laugh about just how no one knows how to call their insurance company. I wanted it to be Like you're having a conversation with a [00:05:00] friend because I feel like we're kind of all friends in this. 

Jessica Fein: it absolutely reads that way And I even saw some of my friends in your book and I loved that the letters to myself When you know, you see Effie being like you are a badass you've got this, you know just telling themselves what they wanted to hear but let's back up a little bit and understand a bit about your family So we understand why you were driven to write this book, tell us about your family 

Kelley Coleman: Absolutely. My family's the best. I could talk about them all day. My husband and I have two amazing kiddos. They're ages 12 and 10, and they are both weird and wonderful and quirky in all of their terrific ways. They are the best of friends. Our older son plays the tuba and the electric guitar and does magic.

And is presently rebuilding the Indiana Jones set out of Legos, so he's a busy fellow. And then our younger son, Aaron, who also is just quirky and wonderful in all his ways, is just obsessed with swimming and airplanes and going to Trader Joe's. [00:06:00] And in addition to all of that, He's super handsome, which is really what matters, and he has multiple disabilities, and for him, that includes a yet undiagnosed genetic syndrome that is, you know, the umbrella for everything we've done, every test science has available, and, um, And we still haven't come up with an answer, but we'll keep pursuing.

And within that, he's been diagnosed with autism, cerebral palsy, epilepsy, cortical vision impairment, microcephaly, he has a feeding tube, he has sensory stuff, fine motor, gross motor, cognitive, behavioral, medical. He's like, I'm just going to check all the boxes. And. Within all of that, he is this vibrant, in love with life human.

You know, this morning, like most mornings, I hear him wake up, and I go into his room, and he sits up, and he starts applauding because he's so happy. I don't know if it's just me, or to just, like, go to school, because he loves [00:07:00] school, but it has been such a journey from not knowing anything about any of this, To really, not having a choice, but to lean into all the bits of it.

You know, all the paperwork and stuff is just awful. Like, it's never gonna be fun. We're never gonna be like, you know what, I can't wait to fill out my annual redetermination for all the social service. No! But, You figure out better ways, and with all of the therapy and the appointments and school and everything, our son, his communication is still emerging, he's a complex communicator, but there's been so much where, as he's gotten older and has developed, we've been able to really lean on him to let that guide our journey.

So, as you know, like, all of this is really complex. 

Jessica Fein: It is so complex, and I think it's not only that it's complicated and it's hard, but so much of it is, you don't know what you don't know. Yes. And so that's why I love [00:08:00] this idea of, here it is, I've laid it all out for you. Here's a map. Now, you were working in film previously, and I was wondering, Did you move completely into advocacy and parenting and writing or is film still part of your life?

Kelley Coleman: I go to a lot of movies. Actually not a lot because then that's babysitting support and all that, but I love movies. So that was my previous career. I got paid to come up with ideas for talking animal movies, which is awesome, but also means I have no real world skills. So there's that. 

Jessica Fein: Oh, wait, hold up. You could do a lot with stuffed animals, entertaining your kids.

Kelley Coleman: Thank you. That is a real world skill. Thank you. I'm waiting till they become teenagers. And they're like, Mom, the chicken doesn't actually need to talk to Appa. And I'm like, cool. All right. So, that was my previous career and I was at a high point in my career and was so happy with how things were going and just on the up and up with everything.

Even you know, [00:09:00] with a toddler and second baby came and I'm like, cool, I'm gonna take some time off and jump back in. And pretty quickly, Aaron's support needs and the time intensive nature of that really outpaced the number of hours in the day. And for me, it didn't even feel like a decision. To walk away from everything because I, I'm very clear in my values and what those are and you know, my kids, my husband, we are the priority and there are absolutely things about it that I miss.

And it was fun and it was cool and I loved the work I was doing. But there for me, and I know this is so different for everyone and we really need to like process and honor like what this thing is that we are walking away from. But it felt so automatic and so necessary. Our family is in an incredibly privileged position that we were able to pay the bills and get groceries from my husband's salary [00:10:00] so that I was able to dedicate myself full time to this, really for the past decade.

And I think that is such a huge thing to acknowledge and point out, because most people do not have that privilege and time. And I know I talk about this in the book, you know, there are all the demographic boxes that equal privilege. Time is such an enormous privilege, and I don't take that lightly, and I feel like that is why we all need to be feeding each other the information on how to do this.

Because we need to equal the access to information and whether that is about a diagnosis or what services are available in your state. We can really support each other through that. And if I had connected with other families who were doing this way earlier in my journey, I could have made this so much easier on myself.

I was making this so hard [00:11:00] for so many years. And man, connect with other people and they can shorthand a lot of stuff. 

Jessica Fein: Absolutely. So it makes me wonder because, as I've said, you wrote the book, I wished I hHad, and you wrote the book, it seems like, that you wish you had. So without this book, where did you turn in those early days?

Where did you find answers? Where did you find support? 

Kelley Coleman: Number one, I spent a lot of time sitting on the couch and crying. And then, a good thing we have a supportive couch. By the way, the couch, it looks like it's been through all the things. And then I would migrate occasionally to the kitchen and, like, eat Nutella out of the jar, and, like, cool, that's breakfast, lunch, and dinner, awesome, and the dog's like, can I have some?

I'm like, no, it's chocolate, you're a dog. I think it's important to acknowledge there was so much floundering. There was also a lot of googling. As you know, the internet can turn around like whatever you are looking for and if they're like your infant's pregnant you're like oh my god mate [00:12:00] like you can find it all.

So there was a lot of that and I say with all seriousness I feel like this book is the alternative to Go Home Google and Cry. Because when most of us are handed a diagnosis, that's what we do because we're not given a path forward. We might be given a name for a diagnosis. You know, for someone like my son, who doesn't have an overall diagnosis, that's a whole odyssey in and of itself.

And the first of the sub diagnoses that we amassed was cortical vision impairments, which means cortical, the brain, vision, eyes, impairments. Ugh, you can't see. And for him, it was a brain processing issue. His vision has developed tremendously and has a good amount of functional vision now. But a decade ago, I literally came home from an appointment and googled and cried and I googled blind children, Los Angeles and Hit return and the first organization that pulled up I was like in [00:13:00] tears and my my baby cried all the time And so I was holding him and like we're crying and it was just such a mess and I called and this receptionist who was amazing I was just like, Hi, my kid's blind.

I don't know what to do. Help. And she was like, Hang on one sec. Let me transfer to Diana. Don't go anywhere. And so she transferred me to Diana, who became a part of our journey and an important one. Like, what a messy way to enter into this. I didn't know anyone in this world. I wasn't yet in community with people who are disabled and talking about their disabilities.

As you know, we all know disabled people. Whether or not they have shared the information of their disability with us is their own business, and no one is obligated to share that. But if I had been in community with or even following online, social media was different a decade ago than it is now. But if I had even been following actual humans with actual disabilities and [00:14:00] organizations that serve and are run by people with disabilities, all of this would have been fundamentally different because it wouldn't have been The random Googling, the random phone calls, and just feeling like the bottom had fallen out from under me.

Because I would have had a reference point based on real humans and real experience. But instead, I was just making it all up, which is a terrible idea. It's not a great strategy. No! I was like, I'm gonna make this up, and all anyone is telling me is just how tragic this is, and how sorry they are for me, and this is And so, of course, I'm thinking, Oh, this is, like, the worst thing that could happen to me, because nobody's saying, Oh my gosh, your baby has amazing hair!

Like, little Elvis hair thing going, like, It was great! Everyone is so focused on what a tragedy this is, that, of course, it makes it a million times harder, [00:15:00] and it's awkward for everyone. But it turns out, talking about disability tends to not be awkward for people who are disabled. 

Jessica Fein: Yes, yes, and yes. And so, first of all, I had the exact same thing of coming home.

And it's almost like they say, when you get the diagnosis, Okay, go forth, you're on your own, you know, go home and Google. And first of all, every single provider needs to be giving this book or telling people about this book. I feel so strongly about that. Again, to repeat myself, it is a game changer, but one of the things that I wonder about, I mean, you said if you had been following anybody who's in this space, if you knew of any of the communities, but why would somebody who is not themselves caring for somebody who's disabled or themselves disabled or, you know, whatever.

Why would somebody be introduced to that community ahead of time? 

Kelley Coleman: I love, love, love this conversation because I was in a bubble where this was not on my [00:16:00] radar at all. Number one, we should all be following people who have different life experience than us. And thanks to the internet and social media, that takes almost zero time and is free.

So, uh, follow people who are experiencing a different life, day, in a different demographic, because it's just good for humans. And number two, all baby classes and OBGYNs and everybody who's an expectant parent needs to have an awareness. Of the disability community and of disability as a thing. Like, it's just math.

There are a lot of people who have and will have or born with or acquire disabilities. And I so wish that, you know, the hospital baby class we took, which was lovely, instead of just, okay, we're going to learn to diaper your baby. If they would have said, and they need to say, Hey, [00:17:00] before we learn to type or your baby, FYI, here's the math.

This is how many babies are born with birth defects. You know, one in 33, according to the CDC, one in six children will be diagnosed with a developmental disability. One in four adults has a disability. We're not saying this to scare you, because disability is not inherently good, it is not inherently bad.

We are saying this to give you math and information. If this is your child, come to us, we have resources. Now let's learn to diaper your baby. 

Jessica Fein: Let's just talk about the language, because what you said was people who are not in the disability community are so uncomfortable. And I think it's even the language.

They're like, can I say the word disabled? Is that okay? And I know that's something you talk about. What's your answer to that? 

Kelley Coleman: Yes, my answer is, I get my information from actual disabled people. And it turns out it's not hard when you do that. So, I didn't used to do that, and it was super hard. [00:18:00] I'm all about acknowledging that most of us grew up at a moment in time when you don't say the word disabled, like, you know, that's terrible.

It's not terrible. And there were so many euphemisms out there, and there still are. And it was the like, don't stare, look the other way, pretend you don't see that person. It was all of that, which is so yucky, and like, my kiddo is loud and proud and you know it when we walk into the grocery store. So if you pretend you can't see him, I know you're lying.

You can hear him, you can see him, like, he is everywhere. And that's how he's living his best life. Talking to real life disabled people and leaders and advocates in this space, every single person talks about how necessary it is to use the word disabled. To use the word disability, number one, it is the word that has been chosen by the disability community, so cool, [00:19:00] let's let them choose.

Number two, which is kind of tied for number one, The reason this is chosen is disability is the word that is used in law. Saying that my kid is differently abled, has special needs, like, whatever thing, does not afford my child any protections under the law, and it does not give him access to services, and just on a big picture level, the Americans with Disabilities Act, Uses the word disabilities.

It defines disability very broadly so that many people can be protected even if maybe they don't view themselves as disabled. If others do, they are still protected. So just the quick familiarizing ourselves with the language that is used that is affording our child protections and services. And I'll cite my own journey as the reason why I [00:20:00] don't yell and scream at people who are still on the journey and their language is evolving.

When I first conceived of this book, the phrase special needs was in the subtitle. Because I hadn't yet gone down the rabbit hole of what do disabled people choose and identify as. And I'm like, check, I got that. And it was hard for me to shift my language. It took effort because I had grown up with like, don't say disabled.

It's bad. Like, it's not bad. It's fine. The shift took time, but it was worthwhile to me. And we should all give ourselves the grace to say, I used to believe this. Now that I have new information, I believe this. Once we say, I have learned from new information, it opens up so many things, including just the deep belief that I have, that we have in my house, that I want my son to grow up with.

That [00:21:00] again, his disability doesn't make him a superhero or an inspiration, like, he is a ten year old dude. Like, that's a lot of pressure. He gets to be whatever he wants. So it doesn't mean like this is the best thing ever. It doesn't mean this is the worst thing ever. It is just an objective, neutral description.

And if everybody today were to just use the word disabled, use disability. as neither good nor bad, but just information, I think it would fundamentally change how we as a society and as people view disability. There are things that can be very hard. Epilepsy in our house is very hard. And I'm not saying epilepsy is awesome.

I'm saying that my son's disability is a part of his identity. It is an important part of his identity. It gives a lot of structure to all of our lives in our house. But disability in and of itself is just [00:22:00] information. 

Jessica Fein: Thank you for that. I think it's so, so, so important for people to hear. And I love this idea that let's get the information from people who are in whatever group it is we're thinking about.

And when you talked about how when we grew up, you know, there were words we didn't use and we were all taught, you know, don't look, don't look. God, is that backwards. And I think about how going out with my daughter and having people visibly turn away because they were trying to be polite and not to stare.

And imagine how that felt to her. Right? I mean, it's just so painful. So I love that you're saying, let's get the information from the people who are living it. 

Kelley Coleman: Yes. And I'm frankly embarrassed that it took me going on a journey to come to that point. Like what? 

Jessica Fein: Guilty. Totally guilty. I will never forget being in an elevator with a mom and her child in a wheelchair, who I don't know what the diagnosis was.

[00:23:00] Obviously, it was just somebody in an elevator, but who had a lot of very visible disabilities. And one of my kids saying, what's wrong with your son to the mother. And I was devastated. Mortified. Mortified. Mortified. And the mother said to me, don't apologize, I would much rather have somebody ask me. And she explained to my child, his body doesn't work like your body does, and whatever.

I'm like, it's like, oh, okay. You know, but I was so mortified because I was like, that's so rude, you shouldn't even pay attention, like, just mind your own business. And yeah. Then, you know, who would have known I would have become that mother. And much prefer for somebody to just say, especially a kid, what's going on?

You know, because then they're like, okay, cool. Want to play? Right? They just want to know what's happening. 

Kelley Coleman: Yes. And interesting you bring that up. I find kids. come from a place of genuine curiosity, even if they're like staring at the feeding tube, because, you know what, no one has seen a feeding tube. Like, unless you have one, your kid, your [00:24:00] loved one has one, like, you've never seen it, you don't know what this is.

It's fine, we get it. Kids tend to be lovely, adults tend to be weird. 

Jessica Fein: Yes, totally. But what else do you wish families who didn't have a disabled child did differently? 

Kelley Coleman: Number one, that, oh, I'm so sorry, whether it's actually saying it, or the look on your face, and the, I don't know how you're gonna do this, and oh my goodness, I feel so bad for you, this is terrible, like, that is zero percent helpful, ever.

Because then that puts me into a position of having to manage your fragile emotions. Mm hmm. And I do not have the bandwidth. 

Jessica Fein: I do not have the bandwidth, absolutely. 

Kelley Coleman: Yeah. Yeah. And also, like, there doesn't need to be a congratulations. Isn't this wonderful? Again, like, I'll say epilepsy, because It's often on my mind, like, no, that's not wonderful.

We're so busy trying to fill the empty space of the air with just saying something that [00:25:00] we often make it worse. Maybe I'm making myself feel better by saying like, Oh, you're such a special mom. Like, no, like it's Wednesday and like, I'm barely wearing pants. Like, it's cool.

Jessica Fein: Or by the way, on that note, your son is so lucky to have you as his mother.

Kelley Coleman: And sometimes I do kind of get the look on my face and in certain moments will ask back be like, aren't all children lucky to have this person as their parent? I have one son who is disabled, one son who is not and have people come up to us in public and strangers and say like, Oh, he's so amazing.

He's such an inspiration. And then, like, I'm looking at my 12 year old, and I'm like, And him, too. Yeah. Like, like, it's cool. There needs to be a whole class on, like, how to be a grown up, and how to say things and not fill the space with just the talking. And I'm certain I have done this in the [00:26:00] past in, like, all the things.

So, while I'm not shaming anyone, I'm saying let's work together to figure this out. It is okay. To not just fill the air with words. Don't try and voice your emotions upon me. Instead say, Hey, how is that for you? How are you doing? How does that feel? How is he doing? Engage with curiosity rather than just trying to fill the air.

Even if you say, I don't know how to respond to that. I'm not in the situation. So I don't know what that feels like. If you're comfortable, will you share that with me? Or better yet, like, can I buy you a fancy coffee? Like, yes! The answer is always yes. Just say, I don't know what you need in this moment, or what you might need moving forward, but what I do know is I want to be supportive of you.

You're my friend, my family member, my neighbor. I know I want to support you. If you have a way I can do that, do you need me to, like, drop off some donations, or go pick up some bread? [00:27:00] Cool. Cool. And also, if you don't know how I can support you, let me know when you do, and I'll brainstorm some ideas too.

How about that fancy coffee? It is okay to not know and sit with people in the space of not knowing. The people who have validated and even said when I'm having a low moment, that sounds really hard. Period. Not. That sounds hard. Here are all the things that I think you should do to make your life easier.

No “or that sounds really hard, but."

Jessica Fein: Or, “that sounds really hard, at least.” Like, no, no. Just period. After “hard,” period. And I would add to what you're saying, which I love all of that advice so much, and I would add. Acknowledge the child, right? Yes. Oh, that. Yes. One. One. Yeah. So, okay. That's if you are a family without a disabled child.

Now, what would you say to the person, as we've both admitted, we were in over our heads. We didn't know what we were doing. We weren't comfortable in this world beforehand. So [00:28:00] now I've just either gotten a diagnosis or maybe I don't have a diagnosis like you don't, but you know that there are all kinds of things going on.

And, and the person comes to you and is like, I don't know what to do. I don't know if I can do this. What advice do you have for that person other than here's my book? 

Kelley Coleman: Yeah. Number one, again, back to just like validate. If you are new to this world or maybe you're a decade in and then a diagnosis just came, new one just came to you.

Like whatever the thing is, just validate how the other person is feeling because if you are feeling overwhelmed and inadequate and exhausted, like yes, you are right on track. Yup. Been there. You are. I don't know anyone who's like, oh yeah, this was a breeze. It is like learning to be a neurologist while you're, you know, changing diapers and ordering medicines.

So, validate that. And we need to help each other figure out how to make this life sustainable. Caregiving is a job. Being a parent and [00:29:00] being a caregiver, a caregiver is in addition to parenting. It is not a separate thing. There is so much crossover, but if we can really come to a point when we are talking about the caregiving experience as a job, for me, it was sudden, surprising, full time, and forever.

As long as my son is around, as long as I am around, that's it. This will be a forever job for me, and I need to, especially in the moments when my mental health is doing pretty well, it varies. But be able to say, I need to set up systems and I need to put systems into place so that I can take care of and learn and do to the best of my ability, the job of caregiving, so that I can also be a parent and say, you know what, there's all this work to do, but it's in a good place.

We are [00:30:00] just gonna go to the park, and that looks different for us, and we have a service dog, and medical equipment, and nine changes of clothes, and like, all the things. But, when we can support each other in the job of caregiving, like, we are one another's co workers. It is so isolating, because we don't have the co workers in the office to go to.

But if we can lean on each other and say not here's what you have to do to figure this out But can I support you as you figure this out? It is no accident that in the book that each chapter of the section is what worked for me Maybe that will work for you. If so, great. Here's your list, but there's what worked for me In our family, at this moment in time, with our specific child, with his specific disabilities.

And there's also the questions like, Here's what you need to ask yourself. Here's some starting points for you. We need to support each other in building our own journeys, that are unique, that allow for loads [00:31:00] of room for error. The times when I've failed the most miserably are when I have the rigid, the schedules, and this has to happen, and this, and this, and this, and then I'm up all night, and I can't function, and everything goes out the window, and I'm back to eating Nutella on the kitchen floor, which is nice, terrible, but not really sustainable.

Jessica Fein: You talk about getting the systems in place so that you can go about the business of being a caregiver and a parent. It strikes me that that's something that a good friend or a family member can do to help. People always want to know, how can I be helpful? And that's something. That you as a friend can either pick up this book or use whatever resources to help your person set up the systems.

I had a friend fly in when my daughter was in the hospital for three months at age nine when our world was turning upside down and everything was changing. She came and she just, my dining room table, you know, start to organize all the paperwork for me and like, what a gift. You know, she was an organized friend, and so that's something [00:32:00] concrete that can be such a blessing for your friend or family member.

Kelley Coleman: Yes, and the paperwork that is endless. I've literally shown up at a friend's house with the label maker and a box of file folders. And said, like, we're gonna try this. You can rearrange all the paperwork later if you need to. But the stuff can feel so overwhelming, especially when you're already emotionally, cognitively just wrung out.

Those things that we can do to support each other are so meaningful. A friend, Effie, actually, who you cited. Effie Parks, “Once Upon a Gene,” check her out. She's awesome. said somebody showed up and said, can I unpack this month's medical supplies? And that literally brought me to tears when she said that, because I, right now I have six boxes next to my front door that need to be unpacked that we'll get around to it eventually.

Jessica Fein: Listen, I have a whole chapter in my book called The [00:33:00] Stuff. So you are speaking my language, and yes, Effie, who was my very first guest on this show and is such a hero in this space, the fact that somebody did that for her, the stuff, that alone turns your house upside down and psychologically can turn your world upside down because also what you realize is my kid needs all this stuff now to function.

And that is so scary. 

Kelley Coleman: It is so scary, and so your kid might need the equipment, the therapies, and part of the overwhelm for me and for so many of us is, and I need to constantly be on, always, because I need to make sure everything is happening as it needs to happen. Our son's feeding too, but I know he needs to eat at these times.

If the schedule gets thrown off, it throws off his sleep, and that can snowball other medical consequences, and The always being [00:34:00] on, always knowing when I need to renew that diaper order, get this prescription, I think that is a part of the exhaustion that creeps in. And we're like, why is it that at 7 30 at night I can barely keep my eyes open?

I didn't physically do that much. But my brain never stops and Brene Brown, who is just so brilliant in all the ways and talks about the oh you poor thing and the at least and how unhelpful that is. And she talks about overwhelm. The one time I've ever been like Brene Brown, I am not happy with you right now is when she talks about the cure for overwhelm is nothingness.

You need to unplug and have a period of nothingness when your brain isn't on, when you're not doing the things. And that is the issue that caregivers face, is the overwhelm piles on top of itself. And so we are [00:35:00] sitting under this mountain of overwhelm, even in the great times, because my brain is still thinking feeding tube and schedule and sleep and the boxes.

And I don't know that there is ever a point in my life when I will be able to sit with nothingness. Even with support, even with respite of even, like, when my kids are at school. And I think trying to figure out how to climb out from under that pile of overwhelm, knowing that that piece will never be there, is really intense.

If someone has an answer, like, write to us and let us know, Brené Brown. 

Jessica Fein: Oh, no, I was just about to ask you what's the answer. No room for nothingness. I would always just say I am beyond exhausted because I felt like people needed to understand This is not just normal exhaustion. It's not like I can go take a nap and it's gonna be okay because yes It's all the things that need to happen so precisely and you're on the precipice 24 7 and all of that and [00:36:00] also you're in fight or flight Constantly and you're braced for impact and you cannot exhale you cannot. 

Kelley Coleman: No, and it's so important to talk about the hard and I love that your book, your podcast, like everything you're putting out there, it's like, let's talk about the hard and a big part of that, that I learned, you know, I've over 40 experts in this book, very many of whom are disabled themselves.

They were talking about so often how we need to acknowledge and talk about the stuff and the hard. So that our kids are not internalizing, you are hard. Who you are as a human is hard, and I wish you weren't you, I wish you weren't disabled, I wish you were somebody else, because, boy, you're hard? No! Like, talking about the messaging that they themselves grew up with and are fighting against now as incredibly successful adults.

When I say to my kids, I'm really [00:37:00] tired because I was on the phone with the insurance company for an hour and a half before school pick up, and it is just exhausting and makes you kind of bananas. Naming and saying all of the stuff and the hard is giving our kids this messaging You know, to my child who is disabled, like, you are not the hard, you are an awesome human.

To my child who is not disabled, you don't have to be perfect, because you being yourself is not contributing to my stress, overwhelm, exhaustion. I want you to be yourself. You don't have to be perfect. You can, like, bring home a grade that isn't an A. Like, we all need to be humans within this and As caregivers, if we are not allowing ourselves to be humans within this and to validate our own experience, then that's just gonna manifest in all kinds of yucky ways in ourselves, in our family members, and we need to validate the experience of [00:38:00] ourselves and other caregivers.

As we are talking about the caregiving experience, I'm not an expert in disability, I'm not disabled, but I am an expert in caregiving as a job and how that shows up in our house, and how to really view this as the job and the thing and the responsibility that it is, so that, like, we can get a handle on this, which I'm still working on and will be forever.

Jessica Fein: I love that you talk about how our kids are internalizing how we're speaking about it and how we're expressing what we're going through. And I know one of the things that you talk about is teaching our children to advocate for themselves, which I just think is so important. So give us some tips on that.

What kind of self advocacy can these kiddos do for themselves? 

Kelley Coleman: Yes. As you know, even for folks who aren't disabled, self advocacy is hugely important for someone who is. outgoing and comfortable, they'll be very [00:39:00] comfortable saying, Hey, person at the grocery store, you just cut in line in front of me. It's cool.

I'm just going to take my spot back. And that's self advocacy for kids like mine and all disabilities are so different. My son's communication is emerging and he's not able to have a word conversation spoken with us the way that other 10 year olds and other people might. Starting self advocacy as just working on where is your communication and what can you communicate to me and how can I honor your communication, for example.

His self advocacy today might just look like me saying, here's a blue shirt, here's a red shirt, which shirt do you want? And he is able to point. And he can point or grab a shirt, and I say, Oh, the blue shirt, cool, you chose that, you get that. And showing for him that when he makes a choice, I will honor that choice.

Understandably, like if his choices go to Disneyland today, like that's not a [00:40:00] choice I can always honor, but acknowledge, I wish we could do that today. You have school, and Disneyland's expensive, so we are not going to do that today. I hear you. We will talk about Disneyland another time. How can we involve our kids in their IEPs?

Whether that is coming to a meeting, talking about the goals with them. What do they envision for their school day, school year? What do they envision for their big picture future? My kid is not in a position to advocate for systems change in a way that I am able to do. And when it comes to caregiving, cool, I can be out in front of that.

When it comes to disability, I can listen to and follow and support the lead of disabled leaders who are out in front of this advocacy. But really asking ourselves, how can I involve my child in the choices in their day to day life? Does it really [00:41:00] matter which shirt he wears? to the world, no. It matters to him to know that he has agency in his own life.

It can get so complex when you're factoring in intellectual disability, which my son has, because it is way too easy, especially with intellectual disability. to discount or to view as childlike or say like, Oh, you're not able to make your decisions. It's so yucky and it's so messy. There are decisions he is not able to make for himself right now that hopefully he will be able to make for his future and in his future.

And rather than discounting him because of his disability, instead saying, I'm going to meet you where you are. And even if you are not choosing a shirt. I am going to keep asking the shirt or the socks, or if you want to walk the dog or read [00:42:00] books. Engaging the child in making decisions in their own life is such a huge part of advocacy, and also just building that trust and communication, which, you know, my kids will be teenagers soon.

I want a whole lot of trust and communication. 

Jessica Fein: Last question, if you could go back and give yourself a piece of advice when you were just beginning to learn that your life was going to look a little bit different than you had anticipated, what advice would you give yourself? 

Kelley Coleman: Let's see if I can make it through this without crying.

The beginning was such a mess for us. We were totally taken off guard. Our son was an infant when we started on the journey of diagnosis and disability. And all anyone was telling us was how sorry they were and how horrible it was. And my programming from history was, disability's bad, you can't say disability, don't look.

I felt horrible. For months, I thought this was [00:43:00] the worst thing, I am always going to feel like this, I might not feel happy again. And I know that sounds overdramatic, but these are the things that we need to talk about, because they're going through our mind. All of these things are going through my mind, because all of this just pity and tragedy is being heaped on me.

And I felt like I don't have any mechanisms or wherewithal to do anything other than take in all this horrible messaging and to feel terrible. And I thought that terrible feeling of total inadequacy was forever. And I wish I could tell myself, Oh, here I go, I'm gonna cry. However you are feeling now, you will feel better.

That was actually the original title of the book. Because we need to hear that this horrible feeling isn't forever. You are not totally inadequate. This is not a tragedy. Your child is wonderful. In ways that you don't yet know, I wish we could start from a place [00:44:00] of supporting one another instead of keeping these terrible emotions on one another because that's not serving anyone.

Jessica Fein: Thank you so much for all the wisdom you shared today and for writing this book that is going to make such a difference for so many people and for so many families. 

Kelley Coleman: I'm so excited that our paths have crossed and that we are both so passionate about supporting everyone in all the things and acknowledging the hard, because that's actually a really important place to start from.

So thank you for all the work you're doing. 

Jessica Fein: Here are my takeaways from the conversation with Kelley. Number one, we do not need to reinvent the wheel. Connecting with others can shorthand so much of the information we struggle to find when we go it alone. 

Number two, we should all be following people who have different life experience than us. That's just good for humanity. 

Number three. We should get our information from people who are in whatever group it is we're thinking about. Disability is the word that's been chosen by the disability [00:45:00] community. 

Number four, engage with curiosity rather than just trying to fill the air with words.

Number five, self advocacy in ways that are appropriate for a child's abilities is hugely important. Sometimes, that's not enough. That looks like giving your child the opportunity to make a choice. 

Number six, acknowledge the hard. 

And number seven, don't underestimate the power of a label maker. 

Thank you so much for listening.

If you could take a minute right now to rate and review the show while it's fresh in your mind, I would be so grateful. That is how we can make sure that the show reaches more people and continues to grow. Talk to you next time. 

Music: I've got the whole at my fingertips. I feel like lying. I feel infinite. I know we're the kind to think along some other lines, but will be fine.

[00:46:00] Come along now. The sky is endless. Now we. We are limitless now, come along now, the sky is endless now. We are limitless, we are limitless now. The sky is calling, calling out to me. Some new beginnings with endless possibilities. Are you with me? Can you hear me? What I say? Oh,

come along now. The sky is endless. Now we're limitless. We're limitless. Now. Come along now. The sky is endless. Now.[00:47:00] 

We're limitless now. Are you with me now? Can you hear me now? When I'm singing out, when I'm singing out I've got the whole world at my fingertips I feel like flying, I feel infinite I know that we're the kind to think along Some other lines but we'll be fine Ah, come along now The sky is endless. Now we are limitless.