Parenting disabled children is an experience I wasn’t fully prepared for. There are so many joys, but also a lot of unexpected challenges that can sometimes leave you feeling overwhelmed, inadequate, bewildered, and even isolated. One of the most helpful things I've found is connecting with other parents who’ve been through  similar experiences. 

My guest today, Kelley Coleman, is fun, smart and gets it. She's a mom of a disabled child and the author of the essential guidebook, 'Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports.' In this episode, Kelley shares her story, practical tips for navigating complex systems, and talks about the importance of community and self-advocacy.

In this episode, we discuss:

• [00:00] - Introduction and Welcome
• [02:25] - Kelley's Story + Her Family’s Experience with Disability
• [07:20] - Inspiration Behind the Book: A Practical and Relatable Guide
• [15:16] - Learning from Disabled Advocates + Parents
• [17:45] - Getting Comfortable with Disabilities
• [23:43] - Building a Community: Voices from Experts, Parents, and Advocates
• [26:39] - Preparing Parents
• [31:54] - A Message for Families with New Diagnoses
• [41:06] - Redefining Normal: Celebrating Our Disabled Kids
• [47:55] - Self-Care for Caregivers: Finding Balance
• [56:45] - Teaching Self-Advocacy: Empowering Your Children
• [01:06:15] - Check out the Book “Everything No One Tells You About Parenting a Disabled Child”

Whether your child has just been diagnosed or you're looking to connect with others who can understand, this conversation is full of insights and encouragement you don't want to miss.

Links:

• Full show notes and resources: maybethiswillbethecure.com/blog/kelley-coleman
• Kelley's Book: Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports
• Kelley’s Website: www.kelleycoleman.com
• FREE "New Years" Planning Workbook: megangodardcardon.myflodesk.com/newyearsplanning
• Connect on Instagram: @maybethiswillbethecure

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Disclaimer: The information shared in this podcast is for informational purposes only and is not a substitute for professional medical advice. Consult your physician before making any changes to your health plan. The host, Megan, is not a healthcare provider. Always seek guidance from a qualified health professional for your individual needs.

Parenting disabled children is an experience I wasn't fully prepared for. There are so many joys, but also a lot of unexpected challenges that sometimes leave me feeling overwhelmed, inadequate, bewildered, and even isolated. One of the most helpful things I've found is connecting with other parents who've been through similar experiences.

My guest today, Kelley Coleman, is fun and smart and gets it. She's a mom of a disabled child and the author of the essential guidebook, “Everything No One Tells You About Parenting a Disabled Child.”

In this episode, Kelley shares her story, practical tips for navigating complex systems, and talks about the importance of community and self advocacy. Whether your child has just been diagnosed or you're looking to connect with others who can understand, this conversation is full of insights and encouragement you don't want to miss.

Welcome to Maybe This Will Be the Cure, a podcast where the wisdom of a healing journey meets the warmth of shared experiences. Join as we explore the topics of healing, living with chronic conditions, chronic pain, neurodiversity, mental health, and parenting kids with disabilities. I'm your host, Megan.

Hello, Kelley, and welcome to the podcast.

Thank you so much for having me. It has been such a pleasure going back and listening to your episodes, and I'm just like, oh my people, you get it. And also, even just listening to your air travel episode of, you're actually talking about the steps of things to do, which everybody needs, all of the big picture and the connection and all of that. But I love that you also are so good at diving into the super specifics because that's what I do, and we just need to stop reinventing the wheels. And air travel alone, I could talk about that all day.

Well, yeah, your book has such practical applications, too. Here's what you do, and here's a template for it. I'm really excited for this episode, too. I feel like I've been pretty isolated in my parenting experiences. I don't have a lot of friends with disabled kids, and so I just love connecting with other parents that get it, get that unique experience. So I'm excited for today.

I'd love to start with your story, a little bit about you, your life before kids, and then I'd love to hear about your life now, your family and your family's journey with disability.

Yes. So life sometimes takes unexpected turns, and that is part of life, and everybody has a thing. And our unexpected turn happened to be having one of our two kids who has multiple disabilities. Before I had kids, my job was to come up with ideas for talking animal movies, which is awesome and super fun, but I also have no real world skills. So there you go. And going from that and a place where my career was in the best place it had ever been. I worked very hard on all of the things for many years. We had kids. I envisioned myself jumping back into that. I did jump back in a bit after our first son was born. He's now twelve.

And after our second son was born, I was envisioning jumping back into it again, which I tried to do. He's now ten, almost eleven. Oh, my gosh. And I very quickly realized that his care needs outpaced the number of hours in the day. So without ever looking back or thinking twice about it, I unplugged completely from a career I loved, from social things, from kind of the world as I know it.

And I so appreciate you saying that you don't have this voluminous village of other families in the same situation, because, man, I think most of us don't. And even the realization when our son Aaron was young of like, man, I'm gonna have to make more friends. This is weird. I'm a grown up. Like, I'm not middle school anymore. How do we do this? It is like, upending everything.

Both of my kids are amazing and weird and wonderful and quirky. They're the best of friends. And when you are adding disability into that, it's not automatically tragic, it is not automatically heroic. It's kind of everything in between those two. And it becomes such an enormous part of life for so many of us, because in addition to parenting, we are handed the job of caregiving. For me, that job of caregiving, it is full time and it is forever. My son will not live independently. I need a plan for the rest of my life. And also, it is safe to presume he will outlive me. He's younger than me, so I need a plan for after I'm gone. Man, that's a lot to think about.

And especially, you know, wrapping your head around all this. For us, the diagnostic odyssey started when he was a tiny baby. And I've got tiny baby and a toddler and a dog that needs walks and, you know, the hormones and the not sleeping on top of that, and I'm like, oh, I thought I knew what I was doing because our first kid was the, you know, quote unquote easy baby. And clearly my husband and I thought we're like, oh, it's because we're amazing parents. Everyone else is just doing it wrong because we're just so good at this. No. Like, no, that was not the case. Maybe we were amazing, but for that kid. Our second kid came along. He's no less amazing. And I felt totally and completely inadequately prepared for literally even keeping this kid alive. I had never even heard of a feeding tube until a doctor was saying, okay, we're gonna put you on the surgery schedule for a feeding tube for your infant.

Oh, my gosh.

Like, hold up. I need a good cry. And then we need to back up to what is a feeding tube. So it's been a journey.

Oh, for sure. It can be so overwhelming. It's interesting because I had the opposite experience. Both my kids have multiple disabilities, so when my first came, we didn't know right away what was going on. So I just thought, I suck as a parent because I'd read these parenting books and nothing would work. And I'm like, oh, I just must be doing it wrong. And I just was in that cycle for years and years and years until we finally got the diagnosis that fits. So.

Your team was so generous to reach out with a copy of your book because it actually came at a good time for me because even though my kids are who they are, we didn't get official diagnosis for both of them that fit until recently. And my son's type one diabetes diagnosis was just two years ago. So I still feel like I'm kind of new to this. I think in my head I always thought, like, oh, we'll figure something out. It will get better. And then it just was like, no, this is our situation. And so, like, adjusting to everything you need to do medically and, like, planning ahead, you know, that's all the stuff that's been on our minds now. And so I loved how your book had that, like, practical application of, like, how you navigate insurance and IEPS and different therapies. And the financial part I loved, because that's, like, what we're wading through right now-brings up all these different considerations. Like you're saying if your kid's not going to be independent, you have to set up a life that's going to work for you and for them in the future.

But then I also loved how I felt like your book was really relatable, too. Like, I was trying to think of an example. Like, you had said something like, you know, a lot of times people just see the hard parts of autism. They don't see the joys, and there's a lot of joys, and I could just totally relate with that. And so I just loved that balance of the more practical and also the more relatable.

And I was just curious, was there something specific that happened that inspired you to write this? I'm sure you have a lot on your plate when you're a caregiver. So I'm just curious, like, what inspired you to do that? How did you have the time, and how did it come about?

Yes, I was just having the “how did you have the time” conversation with a friend this morning whose child was also recently diagnosed with a diagnosis. That was a relief, because finally something fit. And I love that you said it fit, because that can be really tricky. Even my kiddo has many diagnoses, and individually, it's like, maybe that fits. Maybe that. Oh, and then you put it together, and then he has an undiagnosed genetic syndrome, so it's all within that. But finding something that fits can actually feel empowering, because it is information that allows you to better support your kid. So I love exactly what you said of looking at something that fits.

How do I write a book? Very, very slowly. Right?! There are not enough hours in the day. It helps that I was a writer before. As I'm sure people have told you, you know, everybody says, like, oh, you should write a book. And I'm like, yeah, I don't like the time. And also, this was a book I never imagined I would write because I was, like, all the paperwork and the planning and everything, it is just so boring. I'm weirdly good at it. I don't necessarily enjoy it. I don't look forward to filling out forms. I have so many forms I need to fill out today. They haven't been done yet because they're never fun.

I ended up writing this book. I had a decade worth of these templates and worksheets and bullet points sitting on my computer. And one night, my son was up, and seizures and vomiting and medical stuff and no sleep for, for me, and finally, he went to sleep, and. And he was okay. And when he woke up, he has a therapist who he just loves, who was on the schedule that day. So I was like, you know what? We will take you to go see her, because that is play for you. That is fun. And so I said, I took him there, and I said, I am going to treat myself to a big, fancy, overpriced coffee, and then I'll come back. I'm going to be right next door. Call me if you need me.

So I went next door and I sat down, and I was like, I'm a writer. I'm just going to write something, to do something for myself. And instead, I just sat there and cried, because I was like, this is all too much. It is too much to figure out, manage, do all of this stuff. And I have every advantage in the world. I check all the boxes of demographic privilege so that statistically my kid gets more of what he needs. That's not okay. His friends, statistically, are not getting the supports and services they need because of the boxes they check. Because their parents don't speak English, because of the zip code, because of all these things. And that is so infuriating.

And I help many families often and with enthusiasm, and I have for years. And I realized I needed to write this book. Because if I really, if it really matters to me to equalize that access to information, not just put it out there, but in a way that we can understand and actually use, is everything.

And I felt like if I wrote a book that feels like eat your broccoli, it's going to sit on somebody's nightstand and they're going to end up feeling bad. They've never read it and they don't want to read it because it's boring. And then you feel worse because you're like, I should read this book. If I were a good mom, I'd read this book. And instead, people ask me all the time, they're like, is it weird that I was cracking up during the insurance chapter? I'm like, yeah, weird. And that is the point. Because it has letters from fellow parents, some personal stories from me, interviews with over 40 experts who are amazing, and the templates and the worksheets and the here's the basics on all this, bullet points of what worked for me, questions to ask yourself, where to start. Because it's all about actually being able to build a journey based on your personal experience that works for you, your child, the particular disability. There's no one solution on how to do this. If there was, we would all be doing it. And the overwhelm and the lack of equal access to information is too much. And my great hope with this book is that we can just stop reinventing these same wheels and like, oh, here's what I need to do. When I'm calling my insurance company, if I'm calling 911, when I'm figuring out an IEP or calling another IEP meeting, because, whoa, this is not going well. Like, whatever it is, there is an amount of information that if we all started from that point, we would better serve our kid and we would also be better partners with our medical clinicians, our therapists, our teachers, our spouses, the siblings. This job of caregiving like it is a job.

For sure. I just am thinking about what you're saying with access. And this, like, really hit me in the face when my son was diagnosed with diabetes because, you know, the equipment and the medications for that are very expensive, and I'm just like, even we're drowning. And, yeah, like you said, we tick a lot of those boxes. And so how are other people doing this? And even from the education perspective, I hear so many nightmare stories where, you know, people go in with that diagnosis and they're given, like, no information to, like, you know, live. I'm finding the best resource is parents like that have gone through it.

Yes. And one of the experts in my book who, I just love this sentiment because it's so spot on. Her child, who is disabled is now an adult. And she said in the beginning, I got all of my best information from other parents for years because, absolutely, that's where you're getting the information. And now as the years have passed, she's getting all of her best information from disabled self advocates.

Cool.

And if we are able to connect with other parents, whether it's through the people you see in the lobbies, at therapy appointments all the time, whether it's through, you know, Google cerebral palsy, Indianapolis. And there's going to be a group, whether it's social media groups, the ones that are nice, not the nasty ones. Right?! Like why are you picking at each other.

We’re barely surviving as it is, you know?

Yes. And, you know, connecting with the other parents. And at the same time, something that I didn't do until way too late was connecting with real life disabled people. And that is so easy to do because of social media, because of leaders in disability rights, disability justice creators who are telling their stories. And as you said, you know, when people are telling you, oh, autism is this. Autism is this. I was hearing and still hear all these, like, like, gross, ignorant, like, unhelpful messages about what disability is.

Totally.

Those messages are not coming from disabled people. And when I became in community with actual disabled people, I was getting real firsthand information. And what a relief to actually hear stories from people who are having this experience, who are willing to share, like, why did I not figure that out for years?

And it's cool for me, you know, even one of the therapists that my kids see is autistic. And I love that we have, you know, this example of someone that they can, you know, learn from themselves that gets their experience, you know, more than I ever could.

I loved the first chapter of your book where you were talking about getting comfy with disabilities. And how you were talking about disability isn't tragic, it just is. It's neutral. And I've been learning in the past few years how, like a lot of disabled people will say, just use the word disabled. Don't say special needs, don't, you know.

So I'd love to hear, when you first got your child's diagnosis, did you have that perspective of that idea of neutrality with disability? Did you have that perspective at first, or did it take time to come to that understanding? And then how did you feel getting that diagnosis then? And then what was that experience like and how do you think about it now? That’s kind of a lot, sorry.

Yes, I love it. That is a lot. But it is so important. I came into disability not as a disabled person, but through my son, who is disabled. And the intense level of ignorance with which I entered this world cannot be overstated. If you ask me before kids like, hey, how do you feel about disability? I'd be like, cool, I'm inclusive. Great. If that was really true, I would not have been devastated when my kid started to accumulate his many diagnoses and we started on this path. I had to re-examine all of this, like, ableism and like, oh, don't look at that kid. Pretend he doesn't exist. Those people over there, like, ew, all this horrible messaging that I wasn't even fully aware that all these, like, incorrect and messy and ugly biases, biases exist in my head. And I didn't realize the degree to which that was where I was coming from.

This absolutely has been a journey for me and for many parents entering into this world. And, man, we need to talk about that. Because if our goal in parenting is to best serve our children, if we are not honest about what we need to unlearn and unpack, then it's going to be so much harder for everyone and so much easier for our kids to heap on this internalized ableism, which we don't want them to have because they're great, because they're people. And it was so much just like years of me hitting my head against a brick wall that I did not need to be hitting my head against, figuratively, not literally, because I wasn't in community with disabled people.

And everybody kept telling me, oh, my gosh, I am so sorry. Oh, this. This is just the worst. How are you going to do this? Oh, I could never do this. Oh, how are you going to manage. What?! Like, that is always unhelpful and that is what I was being told about my baby over and over and over. So of course I was so scared. And just the word inadequate I think, describes it so perfectly. I was like, I can't do this. Everyone's telling me that this is the biggest tragedy. And so of course that's how I felt.

And the bridge between, I feel like I am just falling into this bottomless pit and where I am now, which is like, yeah, it's harder than not. But we're good, my kids, awesome. Like, we're going to go play in fountains this afternoon. Is getting to know your kid as they are. And disability is an essential part of who he is for him. It impacts every area of his life. Also, it's not all of who he is. And anybody who meets my kid I think would say, oh, yeah, he's not tragic. Like, he is cheering for the lettuce at Trader Joe's and he is pointing out airplanes and he is just having a dance party because it's time to go to school. Not tragic. Different than my experience. But when we can let go of our bias, our preconceptions, all of this, when we can, as you said, say the word disability, it is not a negative. And using whatever other terms, special needs, differently abled, whatever you want to throw in there becomes this like weird euphemism for I can't say disabled. So I'm going to say this other thing. And that just kind of implies that saying disabled is a negative and it is not. And I am getting all of that language and information from disabled leaders, friends, community who have been forthcoming and willing to share this information with me as parents, as humans. Like, if we can just approach everything from a place of curiosity, willingness to learn and to change what the heck we're doing, if there is a better way, it would just serve us all very well. I will be learning this for forever. My kid is part of a community that I am not a part of. It is a community that is marginalized, has been silenced, like discriminated against, like all these things. And if I can unpack my own stuff on my own time and help him to just like, be a person, because that's what parenting is.

Totally. You know, your book has this community of disability advocates and disabled people themselves and, you know, other parents and experts and stuff. How did you create that community? How did you get in touch with that many people? I still feel we're not there yet.

Well, and I think most people aren't. And it takes time. And certainly connecting with other parents is the first stop. And then joining up with these organizations that serve and at best are run by people with disabilities, starts to plug you in and to connect to all this. You know, volunteer, take a music class with your kid somewhere. Like, whatever the things are, the circles start to overlap, the paths start to cross. And for my book, there are fellow parents who contributed. There are many, many experts who contributed, and the majority of the experts were people I did not already know. But reached out to and said, hey, I've never published a book before and you don't know me, but do you want to be a part of this? And I was so humbled and thrilled by the number of people who got back to me so quickly and with such great enthusiasm who are doing this work at very high levels and said, I believe in what you are doing and the necessity of including and highlighting and elevating disabled expertise in this conversation. I think so often as parents, we absolutely know what is best for our kid, and it's very easy to create that bubble. But if we can say, I got control of the day to day, like, this is what we're doing. I can diaper and I can feeding tube and we can walk the dog. And, like, I know how that goes in our house, but I don't know what his personal experience is. And instead of pushing out the experience of other people, learn from that and allow that to not just expand your mind, but make things easier. Man, life gets easier when you're actually learning from disabled people. And I'm learning like, oh, there's a better way to do that. Cool. I will take that advice. Thank you.

Totally. Or even the, like, the. I've loved in some of the parenting groups that I'm in for diabetes specifically, there's a lot of adults with diabetes as well. And sometimes people will ask, like, what do you wish that your parents did for you? And so I've loved reading that so that I can, you know, better support him as he's going through something that I haven't had to experience, you know?

So I was listening to one of your other podcast interviews, and the host was talking about the statistics on, like, how many babies are born with disabilities. And you had mentioned wishing that it was talked about more openly, that, you know, midwives or doctors would tell you ahead of time that there's a chance that your child may have a disability and that it's not the end of the world, it's not a tragedy. And how you were saying talking about this early on can help parents shift from that fear and isolation to finding resources and community support. So I was wondering if you could elaborate kind of on that. It kind of touches on what we've been talking about. Why, you know, why is it important for parents to hear this message early on? And then how can like healthcare professionals and the experts better prepare and support parents?

Yes, this is so essential and also not hard and not scary. It would change the game for parents going into this. If every hospital baby class, instead of just saying like, hey, let's learn to diaper your baby and then have lunch, they would say, hey, part of the class, before we learn to diaper your baby, it is important to know and the statistics, according to the Centers of Disease Control and Prevention, one in 33 kids will be born with a birth defect. One in six kids will be diagnosed with a developmental disability. One in four adults in America is disabled. That's a lot. We all know disabled people. They may not have revealed their disability to us because that's none of our business, but we already know disabled people. This is already a part of our world. And if in every baby class they said, statistically speaking, that will be someone here, it is not a positive, it is not a negative. You do not have to start out afraid. But if this is you, come to us, we have resources to get you on your path. Now let's learn to diaper your baby. Then it takes the air out of the balloon because when we don't talk about it, it sounds so scary that we can't mention this. And this is horrible that your baby could be disabled. Like what? There's some hard stuff. Epilepsy in our house sucks. I wish I could get rid of seizures, right? Like the medical stuff especially. I have found, and I know you have medical stuff, like it can be a lot. And I am not discounting the work stress, medical trauma of all of that. But if hospitals, if obgyns, if pediatricians, if schools, anyone who could be delivering a diagnosis or, hey, we need to start you on an evaluation, whether it is giving families this book that's like, hey, here's all this you need to do. There's a path. Or referring to the local parent training and information center. Every state has one. They're run by parents. There are resources. And if every doctor just was like, here's a handout with some resources instead of, I kind of half jokingly say this book is the alternative to go home, Google and cry because that's all we do, because we have no path forward, right?

Totally, totally.

All of us. And it doesn't need to be that way. It took me a decade to learn and figure out the stuff that is in the book. I really wish I'd had this book and could have saved myself a zillion hours of the go home, Google and cry that it took to assemble all of this. And it really comes down to real information you can understand and you can use. We are not trying to, quote unquote, fix our kids. Like, my kid has a genetic something that is scientifically impossible, but what I can do is lean into all of the parts of who he is. I can mitigate the seizures to my best ability with my medical team. I can set up an IEP that allows him to be appropriately educated and he loves school. I can do the things so that I can be the parent I want to be and can also put the job of caregiver aside whenever possible to just be a mom and goof off with my kids.

You know, we've received multiple diagnoses for both my boys, and, you know, each time we've gotten a new one. Yes, the go home, Google and cry. Super overwhelming. So, aside from, you know, I would love, you know, parents to get this book. Like, what a difference would that have made if even I have the awareness of, like, yeah, if your kid isn't following the book, you can throw out the book, not your book, but you know what I'm saying of the other parenting things. Like, oh, you can respond to who your kid is and then being aware that disability could be at play. What that would have done for my experience. So I'm just curious, if you had a message to give to families that are getting a new diagnosis, what would you say?

So the first thing I always ask families is, how are you doing? Like, for real? Because so often people are like, hey, have a good mindset. What?! My kids, my baby's in surgery. Like, this is about more than just a mindset. But, yeah, acknowledge and validate however you are feeling. This is hard. This is not what we expect and what we thought we signed up for and start from there. And if you have the feeling that I had, like, you are just falling down this bottomless pit, that you will feel better. That was actually the original title of this book, because, oh, I'm gonna cry. I'm a crier. I wish someone had told me that in the beginning because I thought this awful feeling of total inadequacy would be forever. And, man, that made everything harder because I really felt like I can't do the stuff, and I feel like crap all the time. So you will feel

I very relate with that.

Right?! And this feeling of overwhelm just feels so big and it feels bigger than everything else. And the getting to know our kid, that is the magic that gets us through this. And if we want a shortcut to feeling better, the faster we can connect with other parents who are going through the experience of caregiving. Whether or not the diagnosis is the same, there are many people with the same diagnosis who will have great information for you. I have a kid who might be the only one in the world with his particular genetic syndrome. So that's not on the table for us right now. And the undiagnosed diseases community, the rare disease community, also the communities of autism, epilepsy, cerebral palsy, cortical vision impairment, feeding tube, like all these boxes he checks. Some of the greatest community I found, certainly in the very beginning, was with the down syndrome community. That's one diagnosis we know he doesn't have. But man, I found some really great supports and humans there who are like, cool, come on in, you're welcome.

That's so cool.

Finding that community really makes it easier and I wish I had done that from the beginning.

I have loved doing this podcast because it has given me a chance to connect with people and like getting messages from other parents that are caregivers. It just, you know, feeling so alone in that, you know, in that pit, and that inadequacy, like, you explained that so well, like, yeah, I totally feel that. But I love how you're saying the bridge is like getting to know your kid. And it's interesting because, you know, this is a failing on my part, but I had, my whole life had this or the whole time I had been parenting came from this place of like fixing. Like we gotta, you know, fix this, get them better, get them better. And it's really just been in the past few years that I've shifted to, it's not a problem to, my kids are not a problem to fix. I'll cry too. This gets me emotional. Like, I love my kids as they are and everything we're doing is just to support and help them, you know, make things as easy as possible for them or as like supportive as we can, you know?

Yes, well, and I love, like, we're both crying in case anybody's wondering. Like, the name of your podcast is so good, like that is, it's such a great title because so many of us experience that maybe this will be the cure. By the way, if you google that, pictures of Robert Smith will come up and I'm like, that’s the cure - it's Robert Smith. Anyway, the idea of, like, searching for a cure to fix this and the evolution, I think you'd be hard pressed to find a parent who won't say, like, they had that at some point of, like, I can fix. We can. We can work around this and pretend like it doesn't exist. And that's actually not a thing.

Yeah.

You know, there some of the medical stuff that causes my child suffering, you know, seizures are a great example. If there was a cure for epilepsy, yes, 10 million percent, sign me up. I will help fund that cure. Cool.

Totally.

But with something like autism, like neurodivergence, I love that self advocates who are autistic have come forward and led this conversation of, we are not a problem to be cured. Disability is not something that the goal is fix this disability so they can be like everybody else.

Yeah.

And coming through, that notion of, like, what is the cure? So my kid will be less disabled? And the quote unquote cure to my son's disability and issues that it is causing me, is me. It's not him. It's not doing enough therapy so that he's not disabled anymore. That's not a thing. But it is me saying, I'm unpacking all of these preconceptions, and I am fully celebrating him. And that's the answer to this question. It is not always easy. It is not a clear path. There are a whole lot of - we don't have an answer. There's. There are meltdowns in the grocery store. Like, sometimes mine, sometimes his, right? Like, a service dog and a kid who's, like, squealing over and trying to count the eggs. And I'm like, don't touch the eggs. Like, trying to push a cart. And the other one's coming back with, like, ten boxes of ice cream sandwiches. And I'm like that’s too many ice cream sandwiches. And he's like, there's no such thing. And I'm just like, I'm gonna lose it here. Anybody who says, oh, this is great. This is easy, this is the best. I say, really?

And, like, we need to acknowledge the fullness of our children's experience as disabled people. Maybe we're disabled ourselves, maybe we're not. And we also need to acknowledge the fullness of our experience as caregivers. We shouldn't be expected to erase our own experience and how disability is giving structure to our experience. And I will never sleep the same as I did before my kid had seizures, period.

Yeah.

Ever. There's so much that has changed for me in my day to day and for the rest of my life. And we need to acknowledge and lean into the fullness of everything without sugar coating it, without being whiny butt and just acknowledging things for what they are. And that includes recognizing that we get to be parents and enjoy our kids. And it's really nice, those moments when you are able to connect with that, like, man, you, oh, I'm gonna cry again. Like, you're just so cool. And, yes, bubbles are amazing. Let's blow bubbles for an hour and a half.

Cool. Well, that idea of And. This is really hard. There are challenges here that other people aren't dealing with. If you don't have a disability.

Yes.

You know, when you talked about in the book, like, going on an outing, and you're like, when we're going somewhere, when we do a thing, there's, like, a million things we have to do before, during, and after, I can really relate to that. I am always, like, packing up all this crap, and I'm like, I did not have to think like this before, you know? And so there is that. Like, it is hard, there is challenge, and this world is not set up for people that have disabilities. And also, my kids are these, like, beautiful, creative, wonderful humans that I am so, I feel it's such a privilege to get to raise them and be like, the witness to them, you know, like, seeing their life unfold. And it can be, and, you know.

It can be And.

And to build on that. How can we move through life celebrating in all the ways and in all the places, even when it doesn't look like everybody else thinks it looks like, and not apologize for our kids doing life the way that they do life. That was a big shift that we made. Our son, he is not only visibly disabled, meaning you can look at him and rightfully assume he's disabled. He is. And he is loud and proud and will stand and wave and wave and wave at you because he's so happy to see you for a very long time? That could get awkward for others. And there's actually nothing wrong with that. He squealed loudly at the grocery store, on an airplane, in the library, like, all the places, because he is expressing himself. He is not able to cognitively process, oh, I am in the library, and this is where we're quiet. So I need to express myself more quietly because that is the expected people. Like, no, we are not there people. And it was such an important shift for us. I realized I was going through life constantly apologizing for him when he not doing anything wrong.

Interesting.

And it shifted this conversation so much because, first of all, I don't want him growing up hearing me saying, I'm so sorry for my kid. I'm so sorry. Oh, he's disabled. Because, ew. And then he's hearing, like, I'm doing bad things and this is bad, and I'm bad. Like, no. If he's doing something wrong, like, if he's climbing the shelves at the library, yes, I would apologize for that. He doesn't do that. I absolutely would apologize, and I would hope my kids would apologize for themselves as well. But there's so much that he does that is outside of the normal boxes, and there's nothing wrong with it. It's just a different way of doing things. And instead of saying, I am so sorry, he is the noisiest person at the grocery store. I apologize. He's really loud, huh? Oh, well, he's disabled. Shifting that to, yeah, he's cheering for the lettuces. Thank you for understanding. Yes it just got noisy in this library. Thank you for understanding.

And, like, it would take a real jerk to be like, no, I don't understand. Like, what? Nobody says that. But what happens is when instead of apologizing for not doing anything wrong, I have found saying, thank you for understanding. I don't need to explain. My kid is disabled. In my kid's case, you can figure it out. And for kids whose disabilities are not visible, you don't necessarily need to add that. They might not want you to. They might not feel safe if you do. And that's okay. You don't need to say, oh, I'm so sorry. He's autistic. But to say, like, yes, this is an unexpected experience, waiting in line at the grocery store. Thank you for understanding.

I love it.

It shifts so much, and it makes me feel different, and it teaches people about disability, because what that is building in for them is, oh, okay, cool. We cheer for lettuce now. All right. Which we do. The lighting situation at our trader Joe's is, like, A+. And my kid is like, the lighting and the colors, and we are just going to cheer. But, yeah, it is so much learning all the time. That will always be happening for me.

I love that. So for our family, outings are really challenging for both my boys. And, you know, there's that balance of, like, respecting because a lot of times, they don't want to go places. So we, you know, adjust what they need while also trying to, like, you know, encourage when possible, their, you know, getting out into the world. Yes. But I just, you know, I love how you're, you're shifting. You're helping to shift other people's perspectives of the situation. You know, how you're saying, thank you for being understanding and coming from that place. This is a good lesson for me because I still, I think for me, it's still new, and so I still feel the, like, shame myself or the embarrassment of, like, oh, my kid is not, like, behaving the way that's socially acceptable, you know? And so that is such a good way. Or how in your book you talked about on a plane the message that you have the flight attendants read out. I think it was something like, you know, there's a lot of kids today on the plane, and some are really excited and they share that excitement with their voice or something like that.

Exactly. And just saying to just kind of recap that, I also get if you are on a plane above the ocean or land or whatever, and loud, high pitched screaming starts happening, that is, that. That's an opportunity to freak out if you don't know what’s going on.

Totally.

Which I get, and I want to be respectful of that because most people aren't going to know what's happening. That, oh, he's just real happy to be on plane. So I print out for the flight there. We haven't done a lot of flights. They're challenging. But for the flight there and for the flight back, something that I hand to a piece of paper, I hand it to the flight attendants and say, if you feel inclined to read this at any point, please feel free. Hang on to this for your next flight if ever you need it. And it says something along the lines of, we'd like to welcome all of our travelers. We have a number of young children, one of whom expresses his enthusiasm for flying by making loud, high pitched squealing sounds. If you hear that on the flight, that means he is happy to be here. Thank you for understanding, and feel free to give him a high five for having a great flight when you exit the plane because my son likes high fives.

I love that.

That's it. We're not saying, I'm so sorry. There is a loud, disabled kid here, and it's gonna be noisy. Nope.

Yeah.

We're just saying, here's what might happen, or here's what is happening. Don't freak out. There's no emergency on the plane. Put in your headphones if you don't want to hear it. Have a good flight.

I love that so much because, yeah, there is that, like, you are being respectful of, like, what other people's needs are, too, while also not apologizing for your child's disability. So I, I love that so much.

Just thinking of, like, the different things that you have to think about, you know, like you're saying a flight is challenging. I loved how you were saying in the book, you know, it is hard to parent a kid with disabilities. Hard isn't bad. It's just hard, you know?

And I'm the primary caregiver for both my kids, too. And I know that sometimes that can leave little room for anything else because it does require a lot. Like you're saying I'm not going to sleep like I used to. That's just the reality. But I do know it's important to fill your own cup, and I have chronic conditions myself and so attending to those things, I'm just curious, what does self care look like for you? What do you do to take care of yourself? I loved when you talked about it in the book, but I just wanted to bring it up here a little bit.

Yes, I love talking about self care because I feel like there's so much that is this myth that ends up feeling shaming for caregivers. I don't want to take a yoga class. If I went to a dark room with a bunch of bendy 20 somethings who are going to, like, go have brunch afterwards, I would just cry and I would feel gross. That might not be the self care I need right now. And self care we need to think about as something, yes, it is essential. And as caregivers, it might be different or not available at a certain moment. If I'm in the ER with my son, like, I'm not going to take a minute to meditate. I'm going to deal with ER stuff. But look at self care as how do I want to feel and what are the things that are going to bring me that feeling. It might be an indulgence spa day and mimosas. Great, go do that. It might be. I only have five minutes. I'm going to walk around the block. It might be I need to lay down on the floor. It can be anything.

And for caregivers, oftentimes, I think we need to have a foundation that is solid before we do the self care so that we can actually take advantage and benefit from the self care. And by that, I mean I am always feeling like I am buried under a mountain of paperwork. Do I need to check a couple things off that list? Big or small things so that then when I go to have dinner with a friend, for example, when I go for that walk, whatever it is, I'm able to power down.

You have the capacity for it.

Yes, you have the capacity. And I think that piece so often gets left out, and everybody's like, oh, you should take a yoga class. You should do this. You should get a massage. And I'm like, I am not there. And if people say, well, you should be, or anything that starts with you should just, is just totally unhelpful, right?

No, thank you.

Unless its you should just take this gift card I'm giving you and go buy a fancy coffee. Yes, I should.

Yes, thank you.

Yes, thank you for that very much. Think about what you need in order for that self care to feel good and beneficial. And there is nothing wrong with saying, you know what? I actually need to fill out this school form before I go do the self care thing, because filling out that form creates that space for me mentally. That will help me to feel better. And setting that foundation can be really important.

Totally. Yeah. That makes so much sense. Like, you can't even relax if, you know, if there's too much bubbling up that makes your body feel unsafe or it's on your mind, you can't even let go.

And often, and I'm sure you can relate to this, when medical complexities are part of the mix. And sometimes, even if they're not, it can be so hard to not feel like we are on all the time. I feel like I am on all the time. I don't like being tied to my phone, but I am tied to my phone because the school could call at any moment with a medical emergency, and I need to be able to deal. I'm always listening in the night, whether I'm laying in my kid's bed with him or I'm able to sleep elsewhere, because I am monitoring for seizures, vomiting, aspiration, like, whatever the things are. And as caregivers, the cognitive labor and the always feeling on needs to be talked about, because I think that is where these very deep levels of exhaustion are coming from. Because we don't get to turn it off. And maybe you're monitoring what your kid is eating because diabetes. You got a monitor what your kid is eating, and did they sneak a cookie at school, and are we going to be triaging for that later? There is a lot.

I had no idea. I remember being in the hospital being like, oh, my gosh, people live like this because, yeah, I had no idea what type one diabetes even was. And it's like, no, the tied to your phone thing, all day long, I am checking what is his blood sugar, and then every five minutes making a decision. Do I need to give him more insulin? Do I need to give him carbs? 24 hours a day. It never stops, you know?

Yes, it never stops. I was just talking with a friend whose daughter has type one diabetes and is neurodivergent. And she was saying, and then in addition to that, she's like, if one more person tells me, oh, my cat has diabetes, and talking about their diabetic cats, she's like, no, this is a, great for your cat, but I don't want to hear that right now. I'm, like, monitoring all day.

Oh, my gosh. And, yeah, when you have the neurodivergent piece of it, too, because, like, he can't monitor it himself. And so in little things, like not having those internal cues, like, you know, am I going low? Am I high? Like, that is lacking sometimes. So having to try to figure it out when I'm not in someone else's body, you know, anyways, so you get it.

It is so much. And none of this takes away from our kids being amazing.

Yeah.

Everything that I talk about with my kid, like, I have told him, we have talked about, he is very outgoing, very social, very open. It's all with his consent as to the extent possible. And he knows the hard stuff is not who he is as a human. The hard stuff is being on the phone with the insurance company for three and a half hours and just never.

Why am I submitting prior auth for the same thing that he's going to need the rest of his life? Like, why am I doing this?

Yeah, still disabled as ever. We're good. Feeding tube. He gets 100% of his food. So, yes, the feeding tube supplies are a legitimate thing.

Yes. Oh my gosh.

Yeah. And it's, it's never, that part, that part is never going to be fun. But when we can view that as that is the job and hanging out with our kid is the parenting. Yes, it is such a healthy shift. This is the job that I chose. I was writing talking animal movies. Like, this is very different than that.

I didn't sign up to be a nurse too.

And I am, and I do it with all the ability and enthusiasm in the world.

Totally.

And there has got to be a better way for all of us. And I think going back to the connecting with one another to have these conversations, it keeps us from reinventing these wheels, from burning out, for feeling alone and isolated, and it makes it all doable.

Totally. And I love, like, because your book was so practical with, like, the, you know, insurance or even things like, here's the information that you should keep on hand so that when you're going to different doctor's appointments, you're prepared. But, you know, I was thinking, I think that there's things in your book that apply to other families too. Like, that can be useful for any other family. So that idea of one advocating for your children, you know, in medical settings, in schools, but then also teaching your kids to advocate for themselves. And so I just wanted to ask, you know, from your perspective, why is self advocacy so important, even for little kids? And then how do you start to teach your kids to advocate for themselves?

Yes, self advocacy is top of mind in so many of my conversations with disabled adults. And the stories you hear about the infantilizing and everybody just walking all over them and them not being empowered to be advocates and to be running the show in their own lives is appalling. And every single step we can teach self advocacy for my two kids, one is disabled, one is not. They're twelve and ten. It looks very different. My twelve year old can self advocate with words and conversation, with assessing situations, knowing what is safe, what is appropriate, like, all of those things. My ten year old, self advocacy looks different for him. He does have intellectual disability in play. His communication is emerging. So he can't have a conversation. He can't suss out a situation. He can't tell me if his school services are being properly delivered per his IEP. He's not there yet.

Right.

But what I can do is I can use his communication to teach self advocacy every moment possible. Even the small things. Like in the morning, he has the ability to point and he has a communication device that he uses. He selects words. It says the words. He's getting really good at it. I can hold up two shirts and I can say, we're getting dressed for school. Do you want to wear the blue shirt or the red shirt? I let him choose. When he points to the red shirt, I say, you get to wear the red shirt. That's what you chose. I am teaching him that when he expresses a preference for himself, I will listen to and honor that preference. This morning, he wanted to eat breakfast watching the washing machine instead of at the breakfast table, and he expressed that so clearly. Sure, we can do that.

There are times like he would love to chase after moving cars because cars are awesome. That's not an option. That choice is a terrible and unsafe choice. But I can acknowledge, oh, you want to do that? We will never do that because you could die. No. And thank you for sharing that with me. We can acknowledge when they are expressing these opinions. If it is not an option, like if he asks to go to Disneyland today, also not an option. We can acknowledge. We can explain if the answer is no and when the answer is yes, even if we're not sure if our kids are able to process the information, we're saying we can say, yes, we can go to the park today. That's what you wanted? Yes. You can wear the red shirt today.

Building in from the earliest ages, to the extent that your child's communication builds into it, in whatever form that takes, teaching them that they have a voice in their own lives. Eventually, can you bring them to IEP meetings or if they do not want to be in that meeting, in advance of the meeting, talk to them about, hey, here are the goals and services we are going to be talking about. What do you think? Giving them agency in the process. Going to a medical appointment, even as you are driving there, talking about what will happen, making sure the doctor is talking to your kid before touching their body. If the kid is pushing them away, giving them a moment, teaching them that their body is their own, if a doctor needs to touch their body, if a doctor needs to take blood, give them a shot. Like it is hard to do a blood draw, but we talk through it, we explain it and we explain. And again, my kid is not able to fully verbally engage in the conversation back. I don't know how much of it he understands, but have the conversations with your kids, no matter their level of presumed intellect or communication, and anytime you can teach them to make choices and honor those choices is building in self advocacy. And then when it comes to medical appointments, IEP meetings, buying school clothes, anytime, you can include them in those conversations, because their voice should be the most important one in their lives. As parents, of course, we have a ton of agency over any kid because we are their parent. But it is so easy, and my kid's a great example. It is so much easier for me to just grab a shirt and put on his shoes and do all the things for him. It is so much easier. I don't want to have to do all the things for him 30 years from now. I want him to do as much as he can, to be guiding as much as he can, to be having a voice in as much as he can. And whenever possible, if I can take the time to build in that self advocacy now, it will make all of our lives easier 30 years from now.

Totally. And I think, so both my children have the pathological demand avoidance profile of autism. And so autonomy is huge for them. Them having the say in their life and making choices and having that control. And so for me, it's been learning that line of, you know, like, you're saying, I'm not going to let you run after a moving car. I see that that's what you want to do, you know, so. But that line of, like, yeah, you can eat in the laundry room for breakfast, you know, and, like, letting so much go of things that I thought had to be a certain way and, like, does it really have to be that way, or can they make the choice here? And even when it comes to doctors appointments and different things like that, I have loved finding providers that will respect my kids autonomy and include them in that decision making process. And even when there's times where, you know, medical emergency situations and it's like, we have to help you get this service done. It did start with that, you know, a conversation with them and, you know, they were involved. They walked into the room, you know, giving them as much agency and autonomy as we can, you know, so I love that.

And I don't know if you know the book “Differently Wired” by Debbie Reber.

So I have heard of it. Yeah.

She's the mom behind Tilt Parenting. And the book, when I read it, just felt so revolutionary because it was so much of what you're talking about, of really rethinking everything and, like, does breakfast have to happen in the kitchen? You know, what? Does school have to be the same way it is for everyone? Does everything have to be like this and empowering ourselves to upend everything that we thought was the way it had to be? It can feel jarring at first, and then it can become so liberating. And especially, there are so many kids with the PDA profile that it is about crafting our world in a way that works for them. And it's a lot of work, and I am not denying that. But does it make life better to upend things? And sometimes it does.

Totally. Totally. It's been a bit. It's been a lesson for me, you know, in unraveling all the things, like how I'm making decisions. Is this really for us and for me, or is this for some weird society thing? Like, does that matter? You know, and what. What actually matters and sifting through that. And so they've just been such a gift to me, like, working through all my stuff. Anyways, before we wrap up, I just wanted to give you a chance. If there is anything that you would love to say or anything that we didn't touch on that you wanted to, I'd love to hear it.

Yes. So, of course, check out the book.

Yes.

It really is the handbook for how to do the job of caregiving. It touches on all of this stuff. It allows you to build that journey for yourself. And as you are building that journey for yourself, it will take you no money and almost no time to go onto your social media and follow organizations that serve people with disabilities, organizations run by people with disabilities, creators who are disabled, talking about their life experience. It will give you a perspective that everyone needs. Even if you don't have a kid who's disabled, it will make this journey easier for you. It will teach you things you did not know you needed to learn to. And if we can learn about disability from disabled people, it changes the game and it makes everything easier.

Totally. How can people follow your work? How can they get the book?

Yes. So the book is available. All the book places, “Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services and Supports,” Amazon, Target, Barnes and Noble, your local bookseller. And my website is kelleycoleman.com and that's K-E-L-L-E-Y coleman.com and has all my info and social media and stuff. And would love for people to engage with the book and also your local library. If they do not carry it, email them, call them, ask them to carry it. This information needs to be available for free to the people who cannot afford to buy a book. And so if you have your local library carry this book, is a huge service to many other families.

Totally. That is such a great idea. Thank you so much for coming on the podcast. I love talking with you. I loved reading your book. I just love feeling that I'm not alone. There are other parents that get it and I love connecting with other families. So I just really appreciate it. Thank you so much.

Thank you. I appreciate you and hope to talk to you soon.

Thanks for joining us today. Where dreams are nurtured, challenges are met with resilience, and every tiny step forward is a victory. Hit subscribe so you can easily find new episodes and join this community because maybe this will be the cure.