What EVERYONE Needs to Know About Parenting a Disabled Child with Kelley Coleman
Today’s conversation answers so many questions you’re likely too afraid to ask.
My guest today immediately makes uncomfortable topics comfortable, sensitive subjects approachable and speaks from so much experience, get ready to pull up a chair.
Kelley Coleman is a feature film development executive turned author and advocate for parent caregivers and individuals with disabilities. Her book Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports combines the wisdom of 40 experts and all sorts of cheat codes to save time in all the logistics of raising a disabled child, including her own experience parenting a child with multiple disabilities.
Disability remains such a taboo topic, and there is so much to learn from Kelley. She shares what parents of disabled children wish we knew, as well as speaking hope and validation directly to parents of disabled children.
IN THIS EPISODE, WE COVERED...
- The most respectful terminology to use
- How to handle when your child is curious and you don’t know the first thing to say
- All the emotions that are normal to have when your child gets diagnosed
DON'T MISS-
- Kelley pouring her heart out with ways to make your caregiver role sustainable while sharing validation and hope
// CONNECT WITH KELLEY //
Link to order the book: Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports
Website: www.kelleycoleman.com
Instagram: @hellokelleycoleman
// MENTIONED IN THE EPISODE //
Emily Ladau: https://emilyladau.com
Tiffany Hammond, aka Fidgets and Fries: https://www.fidgetsandfries.co
Elspeth, aka Neurodivergent Parenting: Think Outside the Box:
Neurodivergent Parenting: Think Outside The Box
I believe in you + I'm cheering you on.
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TRANSCRIPT
Kelley Coleman 0:00
My 10-year-old does not move through life like any 10-year-old I had ever envisioned. But you know what? Like, he's happy and he is hilarious and we make it work, either because we're awesome and we have all the answers, or because we have no choice. And you will make it work, even if you don't know how. You don't have a choice like this is just life. This is your child's livelihood and health and existence and life and all of these things, the answers will come. So if you are just eating Nutella on your kitchen floor for a long time, cool, like been there and you're not alone in that.
Danielle Bettmann 0:44
Ever feel like you suck at this job? Motherhood I mean. Have too much anxiety? Not enough patience? Too much yelling? Not enough play? There's no manual, no village, no guarantees. The stakes are high. We want so badly to get it right. But this is survival mode. We're just trying to make it to bedtime. So if you're full of mom guilt, your temper scares you, you feel like you're screwing everything up and you're afraid to admit any of those things out loud - this podcast is for you. This is Failing Motherhood. I'm Danielle Bettmann and each week we'll chat with a mom ready to be real. -sharing her insecurities, her fears, her failures and her wins. We do not have it all figured out. That's not the goal. The goal is to remind you, you are the mom your kids need. They need what you have. You are good enough. And you're not alone. I hope you pop in earbuds somehow, sneak away and get ready to hear some hope from the trenches. You belong here, friend. We're so glad you're here.
Danielle Bettmann 1:56
Hey, it's Danielle. Your Positive Discipline Certified Parenting Coach for parents of strong-willed kids aged 2 to 10. Parenting is hard, right? How do you possibly find a way to keep going when your child is quickly diagnosed with a seemingly endless list of conditions that you know nothing about? My guest today immediately makes uncomfortable topics comfortable, sensitive subjects approachable and speaks from so much experience. So get ready and pull up a chair. Kelley Coleman is a featured film development executive turned author and advocate for parent caregivers and individuals with disabilities. Her book, Everything No One Tells You About Parenting a Disabled Child, Your Guide to the Essential Systems, Services and Supports draws upon over a decade of experience including her own, parenting a child with multiple disabilities. It's an outstanding resource, combining the wisdom of 40 experts and all sorts of cheat codes to save time and all the logistics of raising a disabled child. And today's conversation answers so many questions you're likely too afraid to ask. Disability remains such a taboo topic and there's so much to learn from Kelly. We dive in right away discussing the correctness of the term disabled. We address the toxicity of comparative suffering and she shares very openly and honestly a lot of what to say and what not to say to parents of disabled children, especially when your child is curious and you don't know the first thing to say. She also shares other things that parents of disabled kids wish other parents knew. Then I asked her if it's okay to be afraid of a potential diagnosis down the line for your child and she shares what she learned from the experts that she interviewed on that topic. And if you're well on your way to parenting a disabled child, Kelly dedicates the end of our conversation to pouring her heart out to you. Not only how to make your caregiver role sustainable, but sharing true validation and hope. I highly recommend grabbing her book and coming into this episode with a teachable mind. So here is my conversation with Kelly.
Danielle Bettmann 4:19
Welcome to Failing Motherhood. My name is Danielle Bettmann. On today's episode, I am joined by Kelley Coleman. Kelley, welcome. Thank you so much for being here.
Kelley Coleman 4:27
Thank you for having me and all of the everything that you're doing. I love that you are so focused on parents on a specific journey that applies so universally to everyone. As I've been going down the rabbit hole of all of your resources and things - I have been sending it not just to parents of strong-willed kids and sometimes to friends who don't even have kids, because I love that you just immediately tap into all that is universal for us whether it's we all need better underwear or whether it's, I got to not lose my cool in front of my kids, because that's just going to wreck the day. So I'm so excited for this conversation.
Danielle Bettmann 5:12
Yay. Oh my gosh, you're so kind. And same for the rabbit hole that I've gone down on your side of things I knew right away, you're going to be a great guest. And this topic is super aligned for Failing Motherhood and I can already just tell we're gonna get along just fine. We're gonna have a hard time condensing this into an hour I feel. So go ahead and give us a real quick update. Who are you who's in your family?
Kelley Coleman 5:39
Sure. So my name is Kelley Coleman. I'm a mom, an author, a speaker an advocate, all the things. I have my husband who I'm very fortunate is just a partner and champion of all things and two amazing boys. Our older son Shawn is 12, our younger son Aaron is 10 and they are both wonderfully strange and quirky and best friends and climb all over each other. And in addition to all of the brother nests that they have, our younger son Aaron has multiple disabilities and for him what that looks like he has a yet undiagnosed genetic syndrome and within that has diagnoses including Epilepsy, Cerebral Palsy, Autism, Microcephaly, feeding tube, Cortical Vision Impairment, fine motor, gross, motor, sensory, cognitive behavioral, like, he's just like, I'm gonna check all the boxes. I'm an overachiever. And within all of that, like, I love having conversations with people, when I give that list, and you're just smiling and nodding, because it's not the like, Oh, poor thing. Yeah, because within all of the many disability boxes that he checks, he is vibrant, and hilarious and happy and physically healthy. We go through all kinds of medical stuff, but disability is not my personal experience of the world. I am not disabled myself, but it gives such a structure to all of our lives. And especially me as a parent who is also a caregiver. And caregiving is a job. And for me, that is a full-time and forever job, my son will never live independently and will always need full adult support. It gives a structure to everything. And as I'm sure you've had conversations with so many parents of figuring out who you are within the structure of parenting, and that gets narrowed into even more specific lanes once you're adding disabilities emergencies, medical needs, and also kids who are just in a different demographic than you or walking through life differently than you. You know, I didn't expect I'd be changing diapers and watching airplanes for two hours every afternoon with my 10-year-old. But you know what, like, that is just our day to day. And it's not tragic. It's not an inspiration, like, that's just Thursday like that is that it's just our lives.
Danielle Bettmann 8:12
I love the way that you describe them. Because it's just matter of fact and I'm sure that it's taken you a lot of ups and downs, and a lot of work on yourself. And, you know, a whole journey of kind of acceptance and growth and understanding and just work and paperwork.
Kelley Coleman 8:32
Oh my goodness, yes. Right. And it's always horrible. The paperwork part.
Danielle Bettmann 8:38
So, do you have it all together then? Like, have you ever felt like you were failing motherhood?
Kelley Coleman 8:43
I love that you ask everyone that question? Because I don't believe anyone who says no, ever. We all have that. And whether it's at the very beginning, when I felt like whoa, I don't know what's going on with my kid. I know, there's a bunch of diagnoses coming our way. And I am wholly inadequate and inadequately prepared. And I'm super ignorant about disabilities even though I thought I was cool with all this, but it turns out, I actually know nothing. And part of the like, embracing that, like you're just gonna fail all the time, and all the things and we keep trying and we eventually get it right. It's also the not comparing my heart with your heart. And I think and I know your listeners, I'm sure span a huge range of parenting experience, you know, disability being a part of that or not, or even having the fear of like, "Could this be my kid's path?" It could statistically, that's the thing, not comparing. Because if you are saying, Oh, my kid doesn't have all these diagnoses. So clearly, I'm failing because I'm having a hard day. But she's making it work, we can figure out where we're actually failing and can we fix that? And can we be on the assist for ourselves on that? But if we're comparing your hard to my hard, like, we are just kind of heaping failure on ourselves. And we need to not do that.
Danielle Bettmann 10:18
Yeah, I'm so glad you might put that disclaimer in upfront because you could easily in such a weird way sound like you're bragging? Like, yes, I have it the hardest, you know, listen to what I have going on. And yeah, there's that comparative suffering thing that creeps in where it's like, oh, well, I, I better be grateful for what we got going on. And how can I have a hard day? Because I mean, look at what she's doing.
Kelley Coleman 10:43
Yeah. And it's like, we have friends whose kids have very specific stuff around food and eating and mealtime. And it's like, a whole thing. And we've had the conversations of it is 100% unhelpful. If I jump in and be like, Yeah, my kid has a feeding tube - unhelpful, always. In some circles of friends, my kid is, quote, unquote, the most disabled in some circles of friends, my kid has quote, unquote, the least disabled. These labels and comparisons are always unhelpful, and unnecessary. Because disability is such a broad umbrella. The challenges inherent in parenting and in life, exists well outside of disability. And we can all kind of meet each other over, you know, the things that you talk about - the things that are universal, in our experience, and you know, we're laughing about the paperwork, and it's horrible. I have a lot of paperwork. And I could brag about all the paperwork I'm doing that you're not, but I'm not going to because it doesn't matter. Because, again, like that's just Thursday.
Danielle Bettmann 11:55
Yeah, yeah. And I think there's something almost reassuring about that. Because we all have our things that make motherhood hard. And you know, a parent that has four kids versus a parent that has their first kid, it's a different hard. They're both hard. And they're both hard for that parent, because they're dealing with it for the first time. And they feel very inadequate and inexperienced and there's so much playing into on a given day, what a perception is and how competent we feel, and how smooth things go, and all of that. So, I love that we've just kind of leveled the playing field a little bit. But I want to talk about a lot, you know, uncomfortable or kind of sensitive topics on this episode, so that we can just talk again, about the things that maybe we are afraid to ask, you know, or feel like is a little faux pas. So let's start with that word disabled, is that the term that we can use?
Danielle Bettmann 12:55
Yes, I love that you are kicking off with diving into this. I have discovered it has been such a journey for me, and it will be forever. None of this is actually awkward when you're talking to actual disabled people. And so I think a lot of us are making this awkward when we actually don't need to, including myself for years. And my information about so much of this and especially about language is coming directly from individuals with first-hand experience being disabled, many of whom have been working at high levels in the disability community, lawmaking rights advocacy for their entire careers at very high levels. So the word disability is the word that is chosen by the disability community. And it is the word that is written into law, for example, the Americans with Disabilities Act, saying my kid is disabled, is what guarantees him protections under the law, saying he is special or differently abled, or whatever euphemism we have, just very objectively doesn't give him any of those protections doesn't like give him that I am part of this disabled community. Also, by not using the word, we're kind of tiptoeing around it and we are implying, I can't say that because it's bad. And Kelly's dissing her kid because she says he's disabled like, no, he's still disabled, like it's cool. And when we can all use the word disabled, we can say disability. We are just using it as a neutral description. It's not positive, it is not negative. It is just an objective part of who my child is who very many people are, you know, friends, colleagues, experts, all the people. And I've literally never spoken with a disabled person who says no, no, I prefer special needs. And at the same time, I get that language is always evolving. I'm certain there's language I used in my book 10 years from now, I will be like, well, I can't believe I said that that's outdated. That's wrong. We're all evolving. I said special needs for years because I was not in community with actual disabled people. So I was just making it up and just talking about failing, like, I'm real good at that. So, yeah, like, listen to and learn from people with the firsthand experience, and give ourselves the grace to evolve. And also to acknowledge for myself, it was really hard to make that shift in language, because I realized I needed to like reprogram what was going on in my own brain. And it has been such a shift. Now it is automatic, and it is easy. But it was a conscious effort. And I won't vilify anyone who is on that journey. But I encourage anyone to say like, oh, I'm going to evolve, because language will always evolve.
Danielle Bettmann 15:59
Yeah, for sure and even being able to admit that you'll still have things to learn and things will maybe not even age, well, 10 years from now, is so important to acknowledge. Because every time we have new information, we're able to make new decisions from there, and just having kind of a current level of awareness is really valuable and respectful. So following up on that, is, you know, what feels like every parent's mortified nightmare of their child experiencing for maybe the first time someone that is visibly disabled, and then they don't know how to act, or they say something, you know, asking their parent about that child, and the parent doesn't know what to say. Yep. Do you have advice for those scenarios?
Kelley Coleman 16:52
Yes. Number one is expect that to happen. We're also afraid like, oh, is this going to happen? Yes, 100%, it's going to happen. So we should just be prepared for this. Ideally, we are surrounded by people with disabilities. Many people in our lives have disabilities that are not visible, which means we can't tell by looking at them that they're disabled. And I have a child whose disabilities are visible when he's eating lunch with his feeding tube, like you can tell something's going on, because that's not a sandwich and assume it will happen and think it through in advance. And it's okay to talk about disability in advance. And especially, there are increasing amounts of representation in our media in our books, seek those books out, ask your local librarian, so that it's not shocking to your child. I am pretty certain that almost every single person, child and adult who has seen my kiddo out in public eating lunch with his feeding tube, which he does all the time - it is surprising, because I had never even heard of a feeding tube until we were hospitalized and they're putting my son on the surgery schedule and I had a meltdown. And I'm like, what even is this? Because I've never heard of this before and you're saying my son's getting surgery for it. So it's okay to not know what the thing is, whether that's a mobility device, or a way of movement, or communication or a feeding tube or device, like whatever it is, it's okay to not know and approach from a place of curiosity. If you see your kids staring at my feeding tube, which they're going to and it's actually just fine, normalize that. Both my child's experience as well as your child's curiosity. Give them language. Oh, that kid is communicating with an iPad instead of speaking words. How cool is that? Oh, that woman is at the grocery store. You're right. I see. You noticed that she is using a walker she is using a wheelchair, she has a service dog - how cool is that? And then your kid is brain goes to. Oh, that is cool. Yep. And they're doing all the same things that we are doing. Most people can reasonably gauge if the moment is appropriate or not appropriate to approach someone. If you approach me and are like, Hey, what's wrong with your kid? Then no, that's actually not appropriate ever and there should never be an expectation that someone should share their personal medical information with you. But if someone comes up to me, which happens very often comes up to my son, which happens often especially when his service dog is with us, which is usually and says, "Hey, I'm really curious about the tube in the stomach." "Hey, my kid wanted to ask you a question about why your dog is at the mall?" "I'm just curious of out while your son is applauding for the lettuce at Trader Joe's?" because we applaud for the lettuce of Trader Joe's got a great lighting situation. Being curious, my answer might be "don't have the time right now have a great day." Okay, cool. My answer might be, "oh, yeah, this feeding tube is super cool. Come check it out. Do you like smoothies? That's what my kid is getting all day every day because I'm making him all these smoothies." His smoothies involve chicken and brussel sprouts, which I probably won't tell most kids because they'll run off screaming. But approaching from a place of curiosity, and expecting that this will happen, children will come and children will notice. And I think our generation and moment of time in parents is in this unique in between position, because so many of us were taught don't stare, ignore, pretend you don't see and my kid is a great example like he is loud and proud and is visible and will come up to you and wave in your face. And we might have mobility aids, communication devices, backpack of medical stuff with us. I know that you can see all that it's cool. And if you're super awkwardly pretending like you don't see us, like, no, it's just awkward for everyone, so we can acknowledge with curiosity, and bring people in, and we can continue those conversations with our children of, hey, I felt like I didn't know exactly what to say in the moment. But I love that we were curious about how other people are living their lives, because then that's built in curiosity, in a healthy and engaged way.
Danielle Bettmann 21:42
You painted the pictures perfectly, of exactly what we're not acknowledging and what we think is going to happen or afraid is going to happen and just being able to put words to it. It's going to happen, your kids are going to notice we know that you notice, not a horrible thing. Just need to feel equipped with not only curiosity but resources. And thankfully we live in an age that there are plenty.
Kelley Coleman 22:12
Absolutely and so many resources are created by disabled people themselves, so it's not just us faking our way through. But like, thank goodness, there are so many creators and influencers and leaders who are relaying and sharing their personal experience online. If we were to all just follow organizations that are run by and support people with disabilities, individuals with disabilities who are sharing their stories, if we were to take 60 seconds and populate our social media feeds, with experiences other than ours, it is a free and easy and fast way to just lean into all of this in a way that is safe and appropriate.
Danielle Bettmann 22:59
Yeah. Do you have anybody that you want to call out or you can always share some of those links in and I can put them in the show notes of this podcast that is gonna be nine hours long.
Kelley Coleman 23:08
I'll give you just a couple. Emily Ladau who's also one of my experts in this book, she has a great podcast, email list, has a book called Demystifying Disability.
Kelley Coleman 23:19
Tiffany Hammond, who is such a brilliant influencer, she has multiple marginalized identities, including as disabled herself, has children who are disabled, and speaks very eloquently about firsthand experience as well as parenting experience. And neurodivergent parenting.
Kelley Coleman 23:41
Think Outside of the Box is another great Facebook one of a neurodivergent parent of neurodivergent kids. And each of these people - and I could go on for hours - are coming from a different life experience as parents or not. As neurodivergent or not having different disabilities. And you know, even something as simple as following the American Association of People with Disabilities, all of a sudden, all of these people and influencers are just showing up in your inbox. And having that awareness is really exciting, and makes it so much easier on everyone. And if you are looking to make your life easier, whether or not you have disabled kids follow people with experience other than your own.
Danielle Bettmann 24:26
Yeah, that's such a huge takeaway that can apply to a lot of different scenarios. So while we're on the topic, is there anything else that parents of disabled kids wish other parents knew?
Kelley Coleman 24:38
Everything? Parents of disabled kids wish that other parents knew that we are not an inspiration and oh my goodness, you left the house today? Isn't that amazing? Your kid is a superhero like no, yuck because that can be like weirdly shaming if I'm like, a superhero today, and also we are not to be pitied. And this isn't a tragedy, this isn't the worst thing ever. And within all of the messiness of all of that, that caregiving is a job, and give your friends and those around you who are so much in the thick of this caregiving job, the grace of - I'm going to keep inviting you to things, even though you usually say no, or bail at the last minute, or come three and a half hours late. Because the reality is, the tasks in my life are a much longer to do list, because we're balancing all of the disability in the pharmacy got the seizure meds wrong, and the medical supply order isn't here on time, and I broke the jar of blended food and have to like, there are so many things. So keep showing up. And ask about both of our kids. Don't just ask about our kid who's not disabled because you feel real awkward. And include both of our kids ask, like, Hey, we're having people over for lunch. Your kid doesn't eat food. Is that okay with him? Yeah, my kid totally fine. Ask questions, and just keep showing up.
Danielle Bettmann 26:15
Thank you for addressing that so directly, because I think you know, we've just be so scared to make assumptions. And also, yes, probably make wrong assumptions. So even just that little bit of push in the right direction can help build those connections and that support which is so needed both ways. And so for maybe a parent that is afraid that a diagnosis is down the line, is it okay to be afraid?
Kelley Coleman 26:44
I asked that to a number of my experts as I was interviewing for the book, and kind of sheepishly like interviewed over 40 experts, many of whom were disabled themselves and asking questions like, Is it okay to be afraid? Is it okay to say this is hard? Is it okay to say that I'm worried. And I heard the same things over and over, which is Yes, with an underline to all of those things. And we need to acknowledge this, because that is what allows us to deal with and move through that. It is scary. And the way that disability is talked about, which is almost never, teases up for feeling shocked, and the rug has been pulled out from under me. And this is not what I signed up for. And this is not what I expected. Because disability is so intentionally not talked about, so that we feel like this must be the worst thing in the world, which is how I felt at the beginning of our journey, which for us started when my son was an infant. And when diagnoses are delivered, they're so often delivered awkwardly and terribly with an oh my gosh, I'm so sorry to have to tell you this. This is really terrible news. I don't know how you're going to do this. There's no path forward. It also shouldn't be Congratulations, Your child has a rare genetic syndrome like now, because that's probably not going to resonate with the person as well. We need to talk about disability in a totally neutral way, with language and otherwise. And we need to talk about the math. One in four American adults has a disability. One in six children will be diagnosed with a developmental disability. One in 33 Kids is born with a birth defect. I hate the word defect but CDC There you go. It is math. And however you are feeling do not shame yourself for feeling that way. You are you are in the club. We all feel that way. That's validating , yes. And we need to validate and not anyone who tells you like cheer up you got like, no also unhelpful, like, not gonna cheer up because they got seizure meds wrong, and I'm freaking out in the pharmacy like no, like, I need to freak out sometimes, but find a path forward. And I wish that clinicians and educators and social workers and anyone who either started us down a path of evaluations or delivering a diagnosis, I say that my book is the alternative to go home Google and cry, because that's basically what most of us are told to do. And we're not given a path forward. And the sooner that parents are able to connect with other parents in this situation, the easier it will be on you. You know, back to my list of all of my failures, one of the big ones was not connecting with other parents, right from the start because I didn't know and realize, and number one, the validation of how you are feeling. The oh, I'm not alone in this. And also, we are just reinventing the exact same wheels over and over. Doesn't need to be that way. That's why I wrote this book. That's why these groups and resources are out there. And we can lean on one another. And we can also, once we have our footing, we have our foundation in this, passing this knowledge along and radically sharing information with others can help us feel like okay, this is not for nothing all of these hours on the phone with my insurance company in the customer service and that it is meaningful to be able to share that with others. So parents who are on this journey, however you are feeling Yep, you are right on track.
Danielle Bettmann 30:56
So, big emotions from little people are running the show at your house. Is that right? Do they fall apart when something doesn't go their way? Just once, why can't they accept the fact that the answer is no. Am I right? The struggle is real, you're not alone, and you're in the right place. When your days are filled with relentless push back, it is so hard to feel like a good parent, especially when you're in laws aren't shy in sharing how they think your kids just need a good spanking. Every time you lose it, when they lose it, you feel like a failure. The worst part is, without addressing the root of your child's behavior, you're doomed to play a fruitless game of Whack a Mole reacting rather than preventing the next conflict. And next time, nothing's gonna go differently. The good news is, when you have a handful of effective discipline tools in your pocket, you're able to step into full confidence as their parent, parenting actually becomes a whole lot easier. I promise, you're not failing them, you just need more tools. So if you have a tiny human, who's full of love, and yet so, so difficult, if you can only be so nice for so long. If you've tried everything and still feel defeated on the daily, I free class, authentic and unapologetic is for you. In this free training, I share five huge misconceptions in parenting strong-willed kids that inadvertently invite defiance for mistaken goals, they're using their behavior to meet and what to do about it. How to let judgment roll off your back and truly feel like the parent your kids need, and why what you're currently doing just isn't working and isn't going to anytime soon. So go to parentingwholeheartedly.com/unapologetic to access this exclusive free training immediately. That's parentingwholeheartedly.com/unapologetic The link will be in the show notes.
Danielle Bettmann 33:24
For the parent that is new fresh on this journey, what are some of the things that are always quick on your heart to share with them? Or what do you wish that you heard earlier on?
Kelley Coleman 33:36
One thing that was actually originally the title for my book and changed for all good reasons, but was however you were feeling is, you will feel better. I felt like I was just falling into this bottomless pit for a very long time. Turns out there is bottom of the pit. I hit it many times. And I felt like this horrible feeling of feeling totally inadequate, was forever. And it's not. You might not know how you're gonna climb out of that pit. But you'll get out of the pit and you won't feel like this. If you want a ladder to help get you out of that pit. Again, connect with other families. You know, Google Cerebral Palsy, Omaha. Google Autism, Indianapolis, like whatever it is, groups will show up, connect with groups on social media connect with the support groups, parent groups, and learn about disability from disabled people. This shouldn't be revolutionary, but another thing I was getting wrong for so long. I was just making stuff up. And of course, I was like driving myself just like up against the wall over and over and over. Because it just seemed scary. It's way less scary when you are in community with people having that experience. Because you see, not just oh, isn't this beautiful and wonderful, but also like yeah, it's hard. It's harder than not if you need to ramp up, there are no ramps there, it is harder than not, when you have a sensory processing challenge that makes the grocery store way too much for you. Let's talk about that. Let's hear about that. And you can better support your child and yourself and your family, by learning from other people who have this experience.
Danielle Bettmann 35:24
So key, and that alone is like the springboard, you need to continue to propel that snowball momentum in the right direction, because you're getting that support and that validation, and then you're finding another gem or another breakthrough or another connection or another resource. And, you know, continuing to just rung by rung like, climb, you know, out of that pit.
Kelley Coleman 35:51
Yeah, it is possible, and it is doable. And you know, so much of my book talks about the paperwork, and the planning and navigating the systems and the public benefits and the financial planning and future care plans for kids who may or may not ever be independent, and you know what all that's real boring. And it may never be fun for you to go your insurance company, I get it like I do not look forward to it. However, I have been able to gain a foundation of knowledge and information that makes these things faster and more effective, so that we can deal with the stuff and the work and the job of caregiving for our children. That is in addition to parenting, so that we can get a handle on the stuff and we can give ourselves the freedom to just go be parents to, you know, watch airplanes standing in the driveway, to go to the park, to go get ice cream, like whatever the thing is, this foundation of how to do the stuff gives us the space to be the parents that we imagined ourselves being and doing the craft projects, and, you know, getting pasting glitter out of our hair or all of these things that we can lean into even in the hard times.
Danielle Bettmann 37:11
So you just perfectly encapsulated the answer to the question of what led you to write this book. So the question that I want the answer to that I'm more curious about is how in the world did you find the time to write this book?
Kelley Coleman 37:24
Yes. So first, it does help that I was a writer previously. So writing is something that is fun for me. I did most of my writing while the kids were at school. And very slowly, the nature of our lives, and especially with all of the medical things and potential medical emergencies that pop up with my son, I need to be able to step away from everything with no notice for potentially months at a time. And that happens. So for me, writing a book, or frankly, doing much of anything involves a lot of scheduling time, when I can reasonably assume that I will have that time shutting off the internet, doing the things set it you know, make I love a checklist making checklists for myself that I can check things off and protecting that time so that I can say writing a book is meaningful to me, I'm going to make that work to write this book. And also I learned the hard way, building in so much room for error in my writing schedule. Because certain things will take longer other things will take shorter, this person might cancel an interview 12 times and then disappear entirely. Medical issues might pop up and you're in the hospital with your kid and there's no writing in the hospital, that laptop does not come there. So building in an enormous margin of error, and staying connected to the reason why you are doing the thing, so that when you see chunks of time on your schedule, you feel good about committing to those things, rather than them just feeling like dreadful homework. Because if it's not something I'm looking forward to doing, then that's not a book I should be writing.
Danielle Bettmann 39:24
Yeah. Oh, completely, and that's why it's so evident that it's driven by complete passion and care and concern, you know, for other parents, and I'm so glad that you're able to finish it, because it needs to be out there. And you know, it's so valuable. And it definitely speaks to the caregiver. And so I wanted to circle back to caregiving that you mentioned earlier as that's a job, caregiving is a job, and for a parent that is not a job you can quit, right? It has you know, that lifelong longevity to it, how do you keep it sustainable? And, you know, what does a caregiver need to understand about that aspect?
Kelley Coleman 40:11
Sustainable is exactly the word that I use and I think so many of us are just building this very wobbly foundation, where like, we are going to crack whatever piles of paper I've set up like it is all just going to fall apart, because it's not sustainable. So what we need and like, why I wrote this book, and why I am in conversation with so many caregivers, is that exact conversation of how do we set up systems that make this life sustainable, it would be real great if my book was the like, here's how to do it, here are the exact steps here is what every single person needs to do. Except that that's not real, because all of our lives and children and situations are very different. But we start by learning foundational information, so that we know what questions to ask. And so that we can ask better questions, so that we can build those sustainable systems for ourselves and it does mean putting into place that future care plan and your successor guardians, and all of that, like the money stuff that everybody just avoids, because it's just so daunting, and taking an honest look at all of the things of where you are, where you will need to be in the future, you know, financially care, plan wise, as a caregiver. What is realistic? What are future plans or goals? And how can you set aside time on your calendar, like literally block it off on your calendar for these caregiving tasks, the IEP meeting, the calling your school for another conference, the dental appointment, that your kid who doesn't like anything in his mouth needs a long time for that dental appointment, educating yourself talking to other people, treating it as the job that it is, allows you to get real and get objective about it. And to say, instead of, I'm overwhelmed by all the things, create the space to say, here's a chunk every Monday morning, when I'm going to do these caregiving job tasks, and start with the easiest one, start where you can find a victory and you check that off your list because then you feel like, okay, I did a thing. And once you've amassed these feelings of I've done a thing, it gives yourself the mental space, to take on the bigger things or to even say, what do I need to learn or to know, in order to do our financial planning, that will allow us to get out of debt, save for the $10,000 Adaptive bike, which by the way, that's real and that's how much they cost some times. To do all of these things and give yourself those small victories, so that you can really feel successful in this because you are and will be successful in this and it is for many of us, a lifetime job.
Danielle Bettmann 43:29
Mm hmm. And that's so practical. And that's exactly what you need is something that feels doable and attainable and applicable. I think that's why so much of your advice resonates and feels relatable, because this is what you've been doing. This is your expertise as you're in it. And I love the question that you kind of pose in our correspondence back and forth where you said, Do we get to be our own person, in addition to being a caregiver? What do I have to say about that?
Kelley Coleman 44:02
I think it is essential to our mental health, and exactly how you phrase it, in addition to being a caregiver, that caregiver piece for so many of us never goes away. And I certainly struggle with making peace with the fact that whatever I create for myself as a person, I need to be able to walk away immediately if there's an emergency, perhaps for months or weeks or years. And that is a part some days I'm still making peace with because I feel like am I always the priority in my own life? No. And that's okay. Because the caregiving piece necessitates that I think we will go through times moment seasons, when it is everything and we need to validate that and say like, this is all I am, all I am doing right now. And that's okay. Because my kid has been hospitalized for months or whatever the thing is, sometimes that is what you need, when you are able. And when you are having those moments when you're like, I actually want something else for myself, even if you don't know what that thing is, give yourself something, it can be listening to a podcast, it can be waking up five minutes earlier. And just sitting in the kitchen and staring at a wall or you know, flipping through fancy magazines, or whatever the thing is, or it could be taking a guitar class or going rock climbing, whatever your thing is. And just ask yourself, like, what are the things that make me feel like the person I want to be? Because we can kind of figure out who is that person I want to be within all of this. And we can be very honest about the caregiving piece, especially when it's not going away anytime soon. And we can hang on to those moments of joy or curiosity for ourselves, and start to schedule those things. I know it sounds so boring, but like schedule that time, be protective over your time, do not scroll around on Instagram, and say, Oh man, I used to love going on hikes, I'm gonna go on a hike for 15 minutes, not much of a hike, but cool, I'm doing the thing, because that's what makes me feel connected to myself or the person I want to be or also, mentally or physically able to jump back into the caregiving. And that might require figuring out an extra set of hands. Not everyone is married or has a partner or has family in town or has helpful neighbors living next door. Maybe it's when your kids are at school, maybe it is swapping with another caregiver and saying you got 30 minutes, that's as long as I can handle both of our kids and all their support needs. You got 30 minutes, go. And then you come back and then they get there 30 minutes go. Thinking about those things. We have to get creative, it can be exhausting to even, you know, do the cognitive labor of figuring out how to get yourself that time. And if you don't get yourself that time this month, don't beat yourself up over it. And don't listen to anybody who's like you need to put on your oxygen mask first. You're like, you kidding me? I haven't slept in a month. And like, all my clothes are covered in vomit and I don't even know if it's my own. Like, it's okay when we are supporting our kids needs. In the flip side of that is it's okay to say I actually want to be a person, in addition to this.
Danielle Bettmann 47:49
So valid. And now that you're 10 ish years into that it can be really hope giving to hear that that's possible. When it still feels like too much to even conceptualize, I'm sure.
Kelley Coleman 48:04
Yeah and someone the other day, I was doing an event at this amazing accessible playground locally. And somebody's like, Okay, so you've got this all figured out. And I just laughed out loud. I was like, I have nothing figured out. Because it literally changes every single day. But what I have figured out is, it is okay to fail and to try and to learn it, ask questions and share all the things with all the people and just finding that community where you're like, cool, I can do that. And I don't know if I'm gonna be wearing pants when I show up, but I'm going to show up, makes it all doable.
Danielle Bettmann 48:41
Yeah and so I feel like I jumped into the questions because there was so much I wanted to talk to you about, we dove right in really fast and you know, usually give you time to share, like an anecdote or, you know, a day in the life of some of those earlier years that, you know, can just humanize you even more than just being you know, an expert on a pedestal. So you had mentioned some examples of, you know, only wearing yoga pants for years, not knowing how to recognize seizures, or not being able to stop vomiting, you know, for several years, give us a glimpse of, you know, a few years ago, what motherhood looked like, on a daily basis objectively.
Kelley Coleman 49:26
So, I'll especially go back to the beginning of this, when every single day was scary, like I'm starting to cry just even like putting my brain back into this space. But it's so important to do this. It was scary, because we had no idea what was going on. The reality is our son's genetic syndrome remains undiagnosed. We may never have a diagnosis so we still don't know. But he's doing great. And for months and months especially at the beginning of all of this, our younger son Aaron, would just cry and cry. And it was even beyond friends whose babies had colic. It was nearly impossible to get him to eat, which led us at 3 months old to him getting a feeding tube and I would just sit there. And like, if I was going to eat lunch, it was probably in the same sweats I'd been wearing for three days, you know, while eating Nutella out of a jar on the kitchen floor, maybe with the spoon, maybe not with a spoon. While you know, I had an infant who was just screaming and crying, and it was nearly impossible to get them to eat. The dog was hiding in the corner. My older son who's 19 months older, was just just screaming "all done Aaron all done," because he just wanted this little baby he loved so much to be okay. And I couldn't tell him that it would be okay, because I didn't know. And that's what all of the this boils down to, is when you don't know what's going on. And if you don't know it's going to be okay. You don't even know what okay looks like anymore. It is scary to get out of bed every single day. You are exhausted no matter how much sleep you have or have not had. You don't have the choice to lay in bed and hide under your covers. And you are just going through the motions, not knowing if it's going to be okay. And when we talk about validating however we are feeling I felt terrible and anybody who was like, oh, cheer up! No, nope, bye - I can't talk to you right now. It's not that easy. You will get there. But you can't force it. And sometimes you do have to live in that moment. And if you feel like you're in a moment, when you're like this is as hard as it gets, you know what it might be, and know that it will get better and feel better, and you will do better, however that looks. My 10-year-old does not move through life like any 10 year old I had ever envisioned. But you know what, like, he's happy and he is hilarious. And we make it work. Either because we're awesome and we have all the answers, or because we have no choice. And you will make it work. Even if you don't know how you don't have a choice like this is just life. This is your child's livelihood and health and existence and life and all of these things. The answers will come. So if you are just eating Nutella on your kitchen floor for a long time cool, like been there, and you're not alone in that.
Danielle Bettmann 53:06
Somebody really needed to hear that.
Kelley Coleman 53:08
That was me. I needed to hear that. Yeah. I need to remind myself.
Danielle Bettmann 53:12
Yes, yes, no, we all do and that honesty is just, it cuts so deep. Because you know, that's truly that level of vulnerability that we need to know is out there and you know, feels just like a bomb. So, as we wrap up, is there anything else we haven't touched on that you always like to mention when given the platform?
Kelley Coleman 53:36
I will just reiterate things that you've already asked and we've talked about -learning about disability from disabled people connecting with other caregivers, so that you're getting real information on how to do the job of caregiving on what disability is and is not. Disability will look different for all of our children, all of our families, maybe ourselves today or into the future. Many of us are surprised by it, but we shouldn't be shocked by it. So talk about all of these things with all of these people. Even if this is not your world say to somebody hey, I just listened to this podcast. I had no idea any of this did you know any of this? And that person you talk to might be thinking oh my gosh, myself, my sister my neighbor is going through this right now. Because we all know someone.
Danielle Bettmann 54:32
Yeah. All it takes is us passing it along to one person and then the ripple effect is has started.
Kelley Coleman 54:39
Yes, for sure. It is so true and that's you know, again, why so appreciate your universe of everything because your podcasts, website, like all of the things gives us a connection point for connecting to and supporting one another and our children. Exactly as they are without feeling like anybody needs anything other than starting from validation, and we don't need fixing, we just need to come together. So thank you for giving us that come together point.
Danielle Bettmann 55:14
That's what I am so proud to do. And it's so needed because I needed it to. So tell everybody how to find your book.
Kelley Coleman 55:23
Yes, so my book is available at all the book places, it's called Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems Services and Supports. Long title, but now you know what it is. Amazon, Target, Barnes and Noble, your local independent bookseller and my website where you can find me and all the fun things I'm up to is kelleycoleman.com. And that's ke ll e y coleman.com.
Danielle Bettmann 55:51
Okay, and that will be in the show notes, so it's easy to click from. And the last question I ask every guest that comes on, is how are you the mom your kids need?
Kelley Coleman 56:01
I am the mom my kids need because if I believe, which I do, that every parent, every mom, every dad is the one that their kids need. Then that must include me, doesn't mean I'm getting it right. Doesn't mean I know what I'm doing. But if I believe that to be true, then I am totally confident. I am the one they need. Regardless of failures. I baked the best lemon cupcakes yesterday, and I was like, I'm succeeding as mom and I'm like, one of my kids doesn't need food. Maybe I'm failing. Right? Like, oh, yeah, that. Sorry, dude, let's go watch airplanes. Because I believe we are all that parent. It allows me to feel really good about being that parent. Whether or not I know what I'm doing today.
Danielle Bettmann 56:51
Yes, so true. So valid. And yeah, there's gonna be pros and cons and highs and lows and different angles to the same thing that you could objectively have a confirmation bias on or, you know, taken away. So you don't want to just look at any one piece of evidence and you know, make a jump jump assumption about your identity. But from that one moment in time, it is much more to kind of have those guiding principles that universally subscribe to and if it applies to everyone else, it must apply to you as well. That's such a good way of putting it. Thank you. I love that. All right. This is amazing. Kelley, thank you so much for being here and for taking the time to compile all these resources and share from such an honest, vulnerable place. We have learned so much from you in such a short amount of time.
Kelley Coleman 57:36
Thank you for having me.
Danielle Bettmann 57:44
Thank you so much for tuning into this episode of Failing Motherhood. Your kids are so lucky to have you. If you loved this episode, take a screenshot right now and share it in your Instagram stories and tag me. If you're loving the podcast, be sure that you've subscribed and leave a review so we can help more moms know they are not alone if they feel like they're failing motherhood on a daily basis. And if you're ready to transform your relationship with your strong willed child, and invest in the support you need to make it happen. Schedule your free consultation using the link in the show notes. I can't wait to meet you. Thanks for coming on this journey with me. I believe in you, and I'm cheering you on.
