"Everything No One Tells You About Parenting a Disabled Child" with Kelley Coleman

When life hands you a narrative you never expected, where do you find the script to follow? This question lingered in my mind as Kelley Coleman, the insightful author of "Everything No One Tells You About Parenting a Disabled Child," joined me to share her journey and the wisdom she's encapsulated in her guide for fellow parents. We peel back the layers of our personal transformations, discussing the complexities of medical care, education, and the emotional landscape that defines the experience of raising a child with visible disabilities. She shares her path, transitioning from a career in the film industry to narrating the unique story of her child's life, emphasizing their individuality and potential beyond their limitations.

As our conversation unfolds, we trace the evolution of a special needs mom across five stages—from the initial shock to rediscovering personal power and peace. It's a transformative journey, filled with moments of self-sacrifice and deep reflection on societal expectations and the importance of retaining one's identity. We share our insights into the rollercoaster of parenting highs and lows, the intense commitment it demands, and the surprising joys that can emerge from this unique life experience. This episode is a candid exploration of the emotional terrain that we navigate as parents, offering a narrative that affirms and inspires.

Join us as we navigate the unexpected paths and find camaraderie in shared experiences.

Connect with Kelley Coleman:
Instagram: https://www.instagram.com/hellokelleycoleman
Facebook: https://www.facebook.com/kelley.coleman.56
Website: https://www.kelleycoleman.com/

Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/

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Transcript

Speaker 1: 1:54

Hi, I'm Cara, life coach, wife and mom to four incredible and unique children. It wasn't all that long ago that my son received a diagnosis that had my world come crashing down. I lacked the ability to see past the circumstances, which felt impossible, and the dreams I once had for my life and family felt destroyed. This forward has many years of surviving and not at all thriving, and you'll see a mom who trusts that she can handle anything that comes her way and has access to the power and confidence that once felt so lacking. I created this special needs mom podcast to create connection and community with moms who find themselves feeling trapped and with no one who really understands. My intention is to spark the flare of possibility in your own life and rekindle your ability to dream. This isn't a podcast about your special needs child. This is a podcast about you. If you are a mom who feels anxious, alone or stuck, then you are in the right place. Welcome, hello and welcome to the special needs mom podcast. I'm excited to share with you today an interview style episode with my guest, kelly Coleman.

Speaker 1: 3:13

Kelly and I had not met personally, rather her publisher. I think it is reached out to me and let me know that she wrote this incredible book. Now let me give you a little context. I got a lot of publishers reaching out to try to promote their authors, which is their job. Good for them. I do have to filter them out so that I don't inundate y'all with so many books, and after I checked this out, particularly her book, I was like, oh yeah, this is a juicy one. Maybe juicy is not the right word. It's an incredible book. I will say I was blown away. I was like whoa, how did she do all this is one of the questions I asked for myself. Ultimately, she wrote the book everything no one tells you about parenting a disabled child, and it is your A to Z guide, your manual, your Bible, and I definitely recommend picking up a copy to I'm through it to see what you might add to your own toolbox support system.

Speaker 1: 4:18

Before we get into the episode, let me tell you a little bit more about Kelly. Kelly Coleman is a feature film development executive turned author, who is active in the disability advocacy community. She serves on committees for Children's Hospital Los Angeles, the LA Unified School District and Canine Companions. Her book Everything no One Tells you About Parenting a Disabled Child, your guide to the essential systems, services and supports stems from her own personal parenting experience. It's giving parents the tools to spend less time navigating the stuff and more time loving their kid exactly as they are. She lives in Los Angeles with her husband and two children and her son's service dog. Kelly is also a mom to two amazing boys, one of whom has multiple disabilities, including a yet to be diagnosed genetic syndrome, cerebral palsy, autism, cbi, epilepsy and more.

Speaker 1: 5:12

I think a lot of us can appreciate the and more All right. Well, I think this is a great place to launch into more of the episode. One of the things I loved about it is that we guided the conversation through her own evolution as a special needs mom, so I think you're really going to love it. Let's bring on Kelly Coleman. Kelly, welcome to the special needs mom podcast.

Speaker 2: 5:36

Thank you so much for having me. I love the community that you have built and that your podcast really dives into so much joy, as well as to all of the other stuff. So, yes, so thank you for all that you are doing.

Speaker 1: 5:51

Thank you, thank you. Those words mean a lot to me. Let's dive in more to you, and I'd love to hear a little bit about your becoming. How do you describe yourself as a special needs mom and how did you start as a special needs mom?

Speaker 2: 6:07

I think I started as the way many of us start, which is surprise, and I had no idea what I was doing. And only quite recently did somebody put a word to the feeling that I had at the beginning, and the feeling the word she used was inadequate, and I'm like that's everything. Inadequate is exactly how I felt, and it took me about a decade for someone to put that word to those feelings that I just describe, as it was a big surprise. I had no knowledge that this was the path, or would be the path, and that feeling of I am inadequately prepared for any of this, whether it's the specialists in the hospital visits and the doctors, or the paperwork and the insurance and the IEPs, planning and finances and all of that, and also, which I didn't even wrap my head around at the time inadequate for being an ally within the disability community and how, as a non-disabled person, I am going to enter this space without sucking up all the air in the room and how does that work, and just all of the messiness within this.

Speaker 2: 7:29

I have two amazing kids, one of whom is disabled, one of whom is not, and it is, as you know, a very different path to walk in terms of how are we parenting, how are we dealing with all of the practical and the planning? But then also what does this look like for our family? And even going out to dinner or to the grocery store is very different for our family than it is for everybody else. And how do we not only make peace with that but thrive within that? And having a child who is visibly disabled some people's disabilities are not visible, but his absolutely are. You can tell he's disabled, he is loud and proud and enthusiastic and you can't not know he's there but also that feeling of we're on display every time we leave the house.

Speaker 1: 8:30

Yes, oh my gosh. Those words put a lot of words to the experience I have differently. I think we are now mostly full time wheelchair users and why is it full time, not mostly? And the only thing that really gets me is the being on display that everyone really wants to look at you. They're curious, I get it, but it's like I'm just tired of being on display as I'm supporting my son and they're like watching us. It feels like they're watching us. Maybe they're not. I'm probably making up a lot of that in my head.

Speaker 2: 9:03

I think there's some stuff sure that it's in our heads, but I also think there's an amount of staring that happens, and some of it is the oh, this is weird, I've never seen this before. Some of it is the just like makes your skin crawl, like, oh, you poor thing, whether that's directed towards you as a parent or your child and you're like you know what? We're just getting baby carrots lay off. It's like we're just doing life. And then there's the staring of you are such an inspiration because you are parenting your child. You know what? Hold up. I might be a terrible parent, and just because I'm trying to get my kid to hang on to the baby carrots doesn't make me an inspiration. You know nothing about me. And it's an icky like oh, you're so inspiring or your kid is so inspiring. Be like we are just grocery shopping people. That is not inspiring.

Speaker 1: 10:01

Even though it does feel like a miracle sometimes. Yes, it does. There's that too, that word inadequate. I think that's a probably what I think most of us would definitely identify with, and I'm like, would this be a fun Instagram poll to describe different areas of inadequacy, of the becoming, of being a special needs mom, and to see which one kind of seems like the front runner and one of the ones that you didn't necessarily mention, but I'm like, oh, I think that would be my top area among all the ones you did would be emotionally inadequate, meaning that I did not have the emotional health or even like facility with how do I process these emotions, because they are a lot bigger than emotions that I've had to come across prior to this. So I don't know if you have any kind of experience with that as well.

Speaker 2: 10:51

The emotional piece is huge and I think, something that often doesn't get talked about until we are later and sometimes years into the journey, because we don't even recognize we need to address that and I feel like we all need, right at the beginning, a therapist who is qualified and works with our population of parents and with people with disabilities. Because I think certainly at the beginning of my journey I didn't even know that I wasn't adequately prepared for that piece, Because I think I would have said at the time oh yeah, I got this, I'm good, but no, no, not remotely. And I remember when Aaron was I don't know, but certainly over a year old, so too far in my journey, I was going to a therapist and I was saying you know, everybody keeps saying oh, I'm so worried about you, you should take a yoga class, you should do this, you should do this. And I was saying to the therapist I don't want to do that. I would go to a yoga class and just cry and watch these carefree 20 year olds bend themselves into positions that I can't get into anymore and that doesn't sound peaceful or meditative or fun or anything. And I have all these phone calls and paperwork. And she just looked at me and she said right now your to do list is your yoga, and that's okay.

Speaker 2: 12:23

And looking at, like what do we need mentally, Like what needs to be in place so that we can figure out self care and our own mental health, and there's so much that just unravels so quickly.

Speaker 2: 12:40

And for me, being able to take control over some of this I can't, couldn't control my son's health diagnosis, so many medical things. But when I figured out I can figure out the social service system and get him the supports and like doing those things For me, that made me feel like I wasn't free, falling so much Like looking honestly at what I can control and what I can't control and acting accordingly. Because if I can't control the seizures and the feeding tube and the vomiting for years and like all of these things, you know what I can get the medical supply order to come on time and I might have to badger them to do it. But it gave me a sense of I am not powerless, I am not totally inadequate and I can be the person that my child needs me to be. I think once we figure out that we can be the person that our child needs us to be Boy. That makes everything easier.

Speaker 1: 13:55

Mm, hmm, or I might do a different version of that. We can be who we are, yes, and that is who our child needs us to be, that's exactly in all of my conversations with many parents.

Speaker 2: 14:11

I've only spoken with one parent who I felt like, wow, this changed every bit of who you are and you leaned into that and you are a totally different person, but sounds like you were craving a transformation even before you had this child. For most of us, it is leaning into who we are and what we know and what we do, and I think that's a good life lesson for everybody of just how can we lean more into who we are and use that to be the person that we ourselves need us to be.

Speaker 1: 14:52

Yeah, yeah, I like the way that you said that and just getting a little bit more kind of a context. So in your bio we shared that your previous who you were is an executive director producing films. Did I get that right?

Speaker 2: 15:07

Very close A mouthful of feature film development executive. Basically there are a lot of words. Basically I got paid to come up with ideas for talking animal movies for most of my career. That sounds pretty great.

Speaker 1: 15:20

It's pretty great, right? Yeah, so that was your previous life. At what point, or do you don't still work in that industry? My understanding, I do not. No, and was that planned to leave? Or was it initiated by the becoming of being a special needs mom, or what would you say?

Speaker 2: 15:39

I love that you asked that because I think there's so much that many of us face. I had planned on continuing that career I might do some writing still in that space but I will never go back to the full timeness of that that I once had. I worked very hard for many years to accomplish what I had accomplished. I've worked on some amazing animated movies that are to this day some of my favorites major companies, independent companies and I never planned on leaving that and I still have sadness for the fact that it was a choice that didn't feel like a choice. I did it willingly and also because there wasn't another option.

Speaker 2: 16:24

I am incredibly fortunate to be married to a wonderful human and he had a job that was able to support us. As I left that. I had been pursuing screenwriting and within that world and was at a great point in my career where I was successful and working on things that I loved, and at the best point when I was being the most successful. I walked away from it because my kid needed me. I genuinely didn't feel, and still don't feel, any resentment or anger or whatever, and those feelings are so normal and typical and to be expected. For me, the need was so great and my time and energy was so limited, I knew I was not able to support him and allow him all the things he needed to thrive if I was working full time. I walked away from that and for years was not working. By the way, I love when we all say not working and I'm like here's my advice.

Speaker 2: 17:35

I was in psychology for a decade. Right, we do a lot, even as parents of kids without disabilities, and eventually I did get back to the writing side of that. I am writing books now. I've worked in fiction. My current book is nonfiction and it's interesting how as much as coming up with ideas for talking animal movies has no application in the real world whatsoever. It's just preposterous. But it was a lot of fun.

Speaker 2: 18:10

The storytelling of that and what goes into that not only makes my nonfiction books something that doesn't feel like eat your broccoli and makes my writing fun, but I feel like I am very intuitively tell the story of my kid and his disability and disability and our lives in a way that frames it all very intentionally, because so many conversations there is just like with movies, a beginning and middle and an end.

Speaker 2: 18:44

And it matters so much how we talk about our children and I believe you know, whether it's when I'm writing the application for his service dog who's amazing and we love his service dog or whether it's how I am discussing our future vision of him for him in his life with our IEP team, doing the future planning, writing an article for a publication the way that we speak about our children matters and if everything leads with my son is really hard.

Speaker 2: 19:19

He's disabled and here's the list. And isn't this so hard? Which sometimes it's hard not to lead with those things. But if, instead, we lead with the fullness of his humanity and he loves swimming in the pool and watching airplanes and going to the grocery store. He's 10, he thinks farts are funny and the Simpsons is the best show ever and loves going to school, is painting such a different picture than I was up all night with seizures. And how do we tell all of the things and all of the parts of the story, including those really hard parts, without framing disability as a tragedy, is something that I think is really exciting and makes me feel like I don't know talking animal movies. That does translate into real world, real life skills.

Speaker 1: 20:18

I love it. Offline. I'm like, oh, I want to know all the movies. Well, you talked about telling all the parts of the story and I mentioned offline that I have this, what I called I invented it called the evolution of the special needs mom, and I guess it's a story and it's. It's a typical story, because we don't stay at the end. We kind of constantly go back to, to the beginning, in the middle. But I think it'd be interesting actually to to talk about the evolution and for you to kind of tell your story through the lens of this evolution and particularly to focus on maybe the earlier stages and what you see that helped you shift to different stages. I think it's important to mention on this evolution that the end is not better, because it can certainly sound like it and I'd say it maybe is more desirable. But I think it's a potentially a trap for us to say, oh, we're, we're in the wrong stage, you're not. So the first stage I'll go through all five of them and kind of allow you to kind of share a little bit more about them.

Speaker 1: 21:34

So the first stage is what I call done survival. This is diagnosis. This is no diagnosis. This is when you know, something is not as you thought it would be. So this is like you're learning the language. This is everything's new. This is, you know, sometimes quite literally survival, like we don't know what's going to happen in terms of living and dying. This could be a very short stage and it could be very, very long stage, and typically it takes all that we have to be in this stage Like. So there's not like a lot of working in other career in this survival stage, although sometimes there can be.

Speaker 1: 22:20

The next stage is when we move beyond this initial stunned survival. We go into what I call stabilized, yet self sacrificing. So we've kind of adopted our new normal and for many, many people, part of it coping is this self sacrificing piece which is typically in service of I'm going to give everything, and more than I have, that I have to help my child, and a lot of times the helping is also an attempt to fix, because there's an underlying belief that if I fix my child's challenges, then I will feel better, I will feel me again, I will have my life back. Of course, this is all unconscious, but and there is, I would say like, there's this like mama bear heart that drives it all and the fierceness, and I love that. So there's like the.

Speaker 1: 23:19

There's two sides to this coin, but I think the side of the coin that I'm particularly highlighting is the part where we tend to lose ourselves and we end up exhausting ourselves to the point of resentment. So where we end up with this stabilized, yet self sacrificing is a lot of resentment and kind of a loss of identity and a lot of overwhelm, and we start to ask the question how am I going to do this for the rest of my life? And that question and kind of responding to that question, kind of actually pushing back against that question, gets us to the next stage, which I call the rebellion. And the rebellion is rebelling against how things have been and it's kind of the. It's like the taking back of what was lost. And I think oh, you described it so beautifully at looking at what you said is looking at what I can control and looking what I can't. It's a very, very important skill and I love how you put those words to it.

Speaker 1: 24:26

And so the rebellion is a lot of doing that, but it's also a lot of reinvention and rediscovery of who we are. It's a lot of choosing, it's a lot of grieving, but there's kind of a reinvigoration of really shifting from I can't do this for the rest of my life to how am I going to do this for the rest of my life? And that brings us to the next stage, stage four, which is what I call calm the chaos. So this is when we get kind of imagine like if the first three stages were kind of like drowning drowning with a life preserver, and then like learning to swim this next day. I think it's like we're getting out of the water. We're actually kind of really deepening our acceptance, we're really letting go of some of the expectations that we've been attached to and we're learning how to what we mentioned, this inadequacy, with this emotional facility. Like we actually are learning the skills that we're missing in all the different areas, but particularly in our own internal chaos, and in many cases, are managing our actual life, the external chaos.

Speaker 1: 25:40

And that work then leads us into the last stage that I call kind of cheesy I have to say it's a little cheesy, but it's true and I call it power, peace and possibility, Because when we navigate and evolve in this way, where we end up is having a relationship, like you said, like when we shift from looking what I can't control to looking what I can. The result of that is actually we feel like we have power again in our life. We're no longer a victim, we have power. And this peace part is when we're no longer trying to push against the resistance and not accept what is peace actually is quite close, cause we don't have to change anything in our life to actually experience the peace that is available to us. And then, of course, possibility is like okay, like this is who I am given, who I am and the challenges that we have. What do I want?

Speaker 1: 26:42

And a lot of times like this is when we kind of get to reinvigorate our purpose, and for a lot of us it's how do we give to others and how do we serve others, using both the tragedy and the gifts of what we have or where we have got to. Okay, so those are the five stages, and so let's go all the way back to the beginning, and I'd love to hear a little bit about if you just kind of well, first off, I guess the question is how would you change? Or we were like yes, that definitely, I can totally see that journey or how would you change the evolution, if you're going to customize it to yourself, cause this is not necessarily like oh my gosh, everyone follows this to a T.

Speaker 2: 27:28

I actually think it's kind of brilliant because it is so universal. And you're talking about the storytelling framework. Yay, it's the hero's journey. It's so universal, and my only add to it is that sometimes these things are overlapping and messy, and wouldn't it be nice if it was a straight line forward.

Speaker 2: 27:52

Sometimes I've found myself being like I have got this under control? Whoa, no, I sure don't. And I'm wearing sweats and my hair's in a bun and I'm eating cereal in the pantry for months, right, like we all have the ebbs and flows within this. I would love to be sitting here saying I've arrived, here's how to arrive. Nope, it's a journey as a life and I like having this as a framework. And where were you 10 years ago when I needed this? Because if we all had something like this to look at at the beginning of our journey and I think this is powerful for all of us, and especially for those in the STEM survival, because that can last, as you said, a long time or a short time, but regardless of the length of it, the intensity is intense and it feels all consuming. And when you said that it takes all that we have, I felt that so deeply in my own journey. I just remember mornings of trying to get up off of the couch and not even feeling like I had any. I not even feel like I had it in with me to go walk to the next room and get a granola bar, which I didn't really want. I wanted a real meal but granola bar had to do because I just could open it up and that was all the energy I had and the emotional and mental drain when you feel empty and you're thinking. I know for sure that I love this kid.

Speaker 2: 29:56

When Aaron was born, our older son, sean, was 19 months old, so I had a toddler and I knew your kids are close in age. I had a toddler and I had an infant. Aaron was sleeping much more than the average baby, which is not always a good thing. It's great. When he was awake he was crying loudly and constantly and I remember just sitting on the couch feeling like I just had nothing left inside of me with a baby who I couldn't put down, I couldn't comfort, and a toddler who needed me and he wanted to grow an all of our two and wasn't tall enough to reach and like all of the things, that can be such an intense period and for some people it happens prenatally, postnatally, like years later, whenever it happens.

Speaker 2: 31:02

So each circumstance is different. The stabilizing is a really interesting moment. It wouldn't be nice if it was a clear like today I'm stable and I think it almost requires the self sacrifice to get us there Because I think and I'm not saying it is good or healthy to sacrifice your whole being, I'm just saying that when you start from a place of I have been giving literally all that I have in the survival mode, there is something to hang on to. If you're saying I can sacrifice, you know, my sleep or my healthy eating or job, phone call with friends, like whatever it is, when you have nothing, giving yourself that little bit to hang on to I think is an important part of this process and by labeling this out as steps, I think you make it very objective so that it is not shaming.

Speaker 1: 32:21

I was going to say. I feel like, as I hear you talk about the sacrifice of this, I feel like what really sticks out to me is the reference for a mom who is sacrificing and, like you said, doesn't mean it's healthy long term, and I think that that's why we're talking about it. But there is something about to see somebody loving to the depth that they're willing to really sacrifice. I mean, I think I am Christian and so I feel like there's this ultimate sacrifice, that when you sacrifice yourself for somebody else, like that's the highest extent of love, and again, not like we have to stay there, but I think it just really sticks out and I think, like you said, like there's no shame in any of these stages, like when we've probably all been there, and I think that's really what sticks out as you're sharing your journey.

Speaker 2: 33:09

Absolutely and the lack of shame and owning that. This is what we are doing in this moment. If we recognize this, know that it is where you are and it is where you need to be and, as you said earlier, like you shouldn't try and you know, force yourself to or shame yourself to be in another spot. But at the same time, on a much bigger level, there is this weird admiration and putting moms on a pedestal of mom sacrifice everything for their children and their families. And those are the best moms because they give everything all the time. What Wait? So we just have a baby and we're done and we don't get to be our own person. I think with any parenting, that is a trap. It's like well, that works out real well for everybody except the moms who are silently screaming inside.

Speaker 2: 34:04

Again, you don't have to have a disabled child in order to feel that way, and that's when you talk about the resentment and the overwhelm, when you feel like you are being told or you have no choice but to always give everything and sacrifice so that everyone, even your kids and your spouse, if you have one like those, are the most important people in my world. I would do anything for them and I have come to realize what I need to do. For me is to continue to be my own person, and sometimes that's hard. I still struggle with knowing that I am the primary point person for all things disability and things are going great, but when they suddenly take a turn, I need to be able to step away from everything and I can and I will. And I do not feel resentment towards my child. Sometimes I feel resentment towards literally every other adult in the world who gets to go about their business and be like, oh my gosh, I know that the ladies are meeting for brunch, but I'm in the hospital again, whatever it is, and I think the resentment is a piece that I think people might expect. Oh, I resent that my child is disabled, on whatever level.

Speaker 2: 35:36

But I think what sneaks up on us and we don't even recognize necessarily as resentment is the window of you feel like you're in the zoo watching everybody passing you by. Yeah, and I think that's. Why did they get to do that? Why does their family get to go away for a weekend and I have so much equipment and stuff and vomiting and whatever that we're not going to do that anytime in the near future, and I think that's something that can kind of sneak up on you and needs to be talked about more, because when that is there, then the overwhelm that you talk about sets in and it layers and layers, and layers, because you feel like you're inside the cage in the zoo and you are unquestionably all in and 100% there for your kid and your family and whatever they need. But you do wish that you could be out getting your nails done, wouldn't that be nice? And that option is not always available to me.

Speaker 2: 36:41

And to your third point of rebellion rebellion can sometimes be the tiniest whisper, and those are the whispers we need to listen to. Sometimes that rebellion is exactly flying in the face of what we were just talking about with this expectation that moms give everything, and sometimes we can pinpoint those moments. A moment I can pinpoint is I was on the phone with a friend and I didn't realize at the time just how much I was like in the pit and not myself and barely functioning and like doing all the things I shouldn't be doing. And I had met him years ago in a writing class and he said hey, our teacher is teaching another class. You want to take this class with me and I love this friend and he's great. I was like, yeah, of course I'd love to. And he was like, okay, cool, sign up. So I'm on the phone with him. I signed up and I paid for it. And then I hung up the phone and it was a book writing class and I had never written a book. I hung up the phone. I was like I don't want to write a book, I just want to hang out with my friend. That's funny. And I was like I already put down the deposit and it's not refundable and I'm kind of cheap. So like I guess I'm going to take this class.

Speaker 2: 38:01

And the whisper of I want to spend more time with my friend James, who I haven't seen in years because I've been in the thick of kid stuff, it led me to that spark of yeah, I'll sign up for class with you, not thinking like, oh, I have to do work now and write something for writing class. And I was dragging my feet and I didn't want to do it and was rolling my eyes at this until I sat down and completed the assignment to bring to the first day of class and I realized, oh, I'm going to cry here like the, with all my heart. I wanted to write a book. I never written a book before and it felt rebellious and it felt fun and the idea that fun is often rebellion. For the moms in this world we spend so much time thinking about what are the supports and accommodations that my child and my family need in order to successfully go to the movie, go to the library, go on a walk, whatever that it can ring the fun out of things, Because your mind is constantly going and doing.

Speaker 2: 39:17

Your notion that there is grieving within the rebellion is really fascinating because yes, because rebellion by nature, like there's got to be something you're rebelling against and you might be rebelling against the grief itself. You might be rebelling against the yoga pants and hair in a bun, like whatever it is. You're kind of facing that grief or in some cases saying I'm just going to ball that up and shove that inside to deal with later, which is okay, but often not the best idea Because it's still going to be there and I think the grief doesn't go away maybe ever, and it's so important that we talk about that with the right language. Anybody who meets my kid knows he is just the mayor of everywhere he goes. He is vibrant and all these wonderful things. He is not a tragedy.

Speaker 2: 40:19

I am not grieving him because he's awesome, but, look, I'm grieving. Let me give you a list of all the things I need to do this week. Because of all of the medical and the paperwork and the plant and just, oh my crap, no one enjoys. I'm really good at paperwork. Do I enjoy it? No, I do not and I will never. You know, kind of owning and being able to name what the grief is, I think is really important and I think does take time, because I think part of that journey is getting to know your child as they grow and by falling in love with them, not just because they're your child but because they are who they are. And falling in love with them allows you to compartmentalize, like I'm not grieving his personality, he is a great personality. Okay, check that box. I am grieving that he will never live independently and we need to create a plan for his future. If I am for the day, eventually I will die. That's what happens If I outlive him. We need plans and systems in place and it's okay to grieve that. Again, back to the not shaming, not shaming yourself for feeling whatever. All these really complicated and really messy things are and for me personally, within that takes to your step number four See your storytelling.

Speaker 2: 41:50

This is you make it easy the calm within the chaos, and I love that you touched on its internal and external chaos. Getting a blood draw for one of my kids is not chaos, other one, oh, it's chaos. It's chaos for everybody there, including the people in the way Having the systems in place for me leads to the calm. My brain often thinks in bullet points and I organize things in lists and that has served me very well because I find, when I am spinning whether it's because we've called 911 and I'm waiting for the ambulance and of course I'm spinning or whether that's because of all the to-do lists and I have post-it notes everywhere of how can I fall back onto a system of some sort so that I have something in place that, even within the worst of the storms, there's something I can grab onto for calm, and that is self-care people having a system in place so that when you know that storm is going to hit, it's going to hit sometime.

Speaker 2: 43:03

You might not know when, but for me, knowing that I can grab onto some bit of calm within that storm is the thing that keeps me from falling back into that pit. And then I can function. And it might not be a yoga class that I'm doing, it might not be a 30-minute meditation that I'm doing, but knowing who to call at the insurance company when we need approvals for a last minute of this and this and that and this allows me to deal with that and compartmentalize that so that when it comes time to do a yoga class, my brain is there and I'm able to be in that moment instead of always being in the moment of the chaos. And for me, the calm and the self-care is really about. How can I be in the moment of what I am doing at the time, whether it's for me, whether it's for my kid, whether it's date night with my husband, and knowing that the chaos is coming. It might be shocking, but it shouldn't be surprising. And how to not let yourself be surprised? As you said, we have a whole list of diagnoses and including an overall undiagnosed genetic syndrome that we may or may not ever get an answer to. So how can we, within that, not be totally thrown off when these things happen?

Speaker 2: 44:34

And I actually think it's zero percent cheesy that your last step is called power, peace and possibility. I think, wow, that sounds great. I love kind of the dichotomy of power and peace, because so often we think of power as something we are exerting onto others, but I actually think our great power lies within. We are in control of ourselves internally. Yeah, exactly, and that gives us the peace. And I am able to empower my child. I'm able to involve him to whatever degree. He is interested or able. He's 10. He doesn't care so much about his IP, he just wants to hang out with his friends. But we involve him to the degree that he is able. We see his power as a human and that gives us possibility.

Speaker 2: 45:33

And being able to own our own power to look at the grief, the rebellion, the chaos, all the things that we are going to fall back into in different forms and, as we said, this is not a straight line Allows us to accept possibility for our kids, for ourselves. There are many medical things for him in the future that are not a possibility and this great thing quote unquote, who's to define that? But that we started our parenting journey thinking all of these things are the milestones that we need to hit. Maybe we will, maybe we won't, and that is not a positive or a negative. To say, my kid needs a feeding tube. He is not going to have a sandwich anytime soon. He is not discounting him, but the possibility that the feeding tube affords him, in terms of nutrition, specialized diets, you know, e's of X and Y and Z.

Speaker 2: 46:40

All of these things allows us the possibility, as you said, for us to evolve to the point where we can ask ourselves what do I want?

Speaker 2: 46:50

That isn't just a rebellion against these things, but that it gives me the power, the peace, the possibility, the fun, and for many of us as humans, whether or not we're parents, it does come back to how we are serving others and settling into the reward and joy of that takes back so much joy within parenting, within our relationships, within ourselves, and you know, kind of being the Santa Claus of your own life, of serving others and having generosity of spirit in whatever form that takes for you is exciting and it allows you to go to sleep at night, even on the hardest days, feeling really good, even if you're like I don't know what just happened today, but there is so much joy in saying but I did choose a lot of my day, and I will choose a lot of that tomorrow. It's not the path that I spent my career working for, but it is something not only that I'm proud of, but that I look forward to.

Speaker 1: 48:05

Well, thanks for taking us along your journey so beautifully and eloquently. The words that are sticking out right now is this generosity of spirit, especially because in the last couple of minutes here I do want to highlight the ultimate act of generosity that you have in, which resulted in a book, and so I feel like this book a great way of describing it is a very generous act because you have I can't even imagine how many hours you've poured into compiling what you've compiled. I was fortunate to get an advanced copy and really just blown away at how much information you got into one book. Your book's called Everything. No One Tells Us About Parenting a Disabled Child, and I'm curious what you learned about yourself during the process of writing this book.

Speaker 2: 48:59

The biggest takeaway which is very telling about me and my background, but also all of us, because I think so many of us this is a light bulb moment. The biggest takeaway was learn about disability from disabled people. I realized as I set out to write this how much of my knowledge of disability came from people who are not disabled, and even an act as simple as following disabled influencers, creators, leaders online and just reading what's in their feed it can greatly impact a lot of your views and certainly my views, and also how we are owning and telling the story as parents of disabled children. I am not disabled. The story of disability is not my story to tell because I am not the driver's seat of that.

Speaker 2: 50:04

However, those who say parent caregivers should erase their own experience and fully given and not speak up about anything disability related, I think are also missing a piece.

Speaker 2: 50:19

That is a very important piece because we can't erase ourselves and in the process of writing this, for me, really learning and fully understanding my journey and identity as a parent caregiver is incredibly important and valued. That needs to be shared and collectively, we all need to be sharing our stories of caregiving and I think that we get the best knowledge from each other, and it was such an eye-opening thing for me to really own my identity as I am a parent caregiver I will be for the rest of my life. This book is basically manual for how the heck to do that, because nobody knows, and it's all the boring things, but also the expert interviews, the wisdom and personal stories from myself, but also other parents, because this isn't just about paperwork. It's about the community and the connections that we create with one another. This is why your podcast is so important in providing that connective tissue, because the connections that you are making with your guests, with listeners, with so many people, allows us that mental space to get through all of the annoying paperwork that's not going anywhere.

Speaker 1: 51:49

Yes, we need that space to be able to kind of stick with all that annoying paperwork and those annoying phone calls.

Speaker 1: 51:55

Thank you for sharing your becoming, as you became an author and as you created this book, and I think what I would share with listeners about this book is it's just like one of those books you just want on your shelf because when you have that question that you didn't know that you had five years ago, that it's kind of like this resource, like there's a book. I can't remember the name of it, but it was like everybody when I was having babies had this book. It was like the first year of your kid's life I don't know what it was called and it's like until you actually are there, sometimes you don't know that you actually didn't know something, and so I feel like this book is just it's got everything. I mean, I'm sure there is something missing that we'll figure out in 10 years, but it's very, very comprehensive and I just encourage everybody to pick it up as we do wrap up. Is there anything else that we didn't get to talk about or that you want to make sure that you get to share in this podcast?

Speaker 2: 52:47

Thank you. I think the biggest thing which you share and have shared in the past but to underline is connecting with one another and whether it is that podcasts you listen to every week, whether it is online communities, in-person communities, find these people who are walking this path. Their path might look very different than yours, but reach out, find each other. Your mental health very well made depend on it and I assure you you will find some pretty remarkable people.

Speaker 1: 53:22

Yes, well, we all know. I agree with that. And when people want to reach out to you, what's the best way to find you?

Speaker 2: 53:30

Yes, my website has all the info. It's kellycolmancom and Kelly is spelled K-E -L-L-E-Y colmancom.

Speaker 1: 53:39

Okay, awesome, well, again, thank you so much for sharing yourself with us and for putting this book out there. Just wonderful, thank you so much. Thank you, and we'll see you on the next episode.