Welcome back to the Real Life Momz podcast this is a place where you could take a break from parenting and the chaos of your day to day and take time to focus on yourself I'm Lisa Foster your host and today we are discussing how to break out of the chaos when you're faced with extraordinary demands and I'm here with fellow mom Kelley Coleman who is a featured Exectutive Film development, executive turned author.
Her book is everything. And no one tells you about parenting a disabled child. Your guide to the essential systems services and supports, which stems from her own parenting experience. Hi, Kelley. Welcome to the show. Thank you so much for having me and. Also in this moment in my life when I'm like, I need like a calming moment escape from all the things.
And I was so thrilled this was on the podcast because I'm like, this, this moment is exactly what you're talking about. So anybody else who's feeling that, like we are right there with you. [00:01:00] Awesome. Yes. This is the time that you can just breathe and like, just fill your bucket with something positive. That is my hope.
Yes. Yes. And especially, as humans, as parents, as moms, all of these things, there is always going to be a lot that is being thrown at us. And as we all know, it's not necessarily as easy as, oh, just don't do the things. You still gotta do the things. It's just a matter of figuring out how to, make it all manageable.
And you are providing so many resources for so many people. So I want you to tell us a little bit about yourself, but also about the passion behind this book you have right behind you. I see it on your stand. Oh, you have a few of them. I do. I just got that box from my publisher. I was like, there's no way I'm not putting these right next to me.
It's my elbow. It all goes away. Well, that's kind of like [00:02:00] life, isn't it? It is. We have our perfect stacks of everything and your elbow goes the wrong direction. You're like, everything falls apart. Which is a great metaphor. I love that. So yes, as you said, I'm a mom. I'm an author. I'm an advocate. I'm chauffeur, barber, chef, all these things for my children, which is a blast, but it's a lot.
And my previous career, I was I'm getting paid to come up with ideas for talking animal movies, which is awesome, but also means I have no real world skills, so there's that. I have two amazing kids, my older son Sean is 12 years old, my younger son Aaron is 10, they are best friends, they're hilarious, they're Each their own weird, unique, wonderful guys, um, Aaron, to add to his uniqueness has multiple disabilities, including a yet undiagnosed genetic syndrome.
And within that, [00:03:00] his sub diagnoses include, cerebral palsy, microcephaly, autism, epilepsy, cortical vision impairment, feeding to sensory processing, gross motor, fine motor, cognitive behavioral, like He's an overachiever. He's like, I'm just going to check all those boxes. Cool. Okay. So in the spirit of the swirl and your elbow moves and everything gets knocked over, I feel like we're just like knocking things over all day long.
And my kids are amazing, but the caregiving piece. is real and it is a job and he's 10 years old and it has taken me a decade to figure out, you know, how to get that reimbursement from the insurance company, how to do a financial plan for a child who will never be fully independent. what the heck is going on with all the school and the paperwork and the [00:04:00] documents and the meetings.
What to ask the specialist when we're going in for appointments. All of these different things and more. And I've come to realize, as I've talked to more and more families and moms, especially over the years, we all going into, we all go into this pretty much knowing nothing about any of this. We have to all build many of the exact same systems, and we're all reinventing the same wheels.
And in thinking about that, I realized it was like, I have wasted such a colossal amount of time and money and energy doing these things that other people have already done and figured out. And that's not okay. And, you know, of the many confluence of events that prompted me to finally write this book, it's that there's no handbook for like, hey, here's how to be a caregiver.
And because of that, [00:05:00] we are all handling all of the emotion that comes with having a child with a disability, diagnosed or not. And the job of caregiving Plus, the parenting piece, when we all just want to like, we just want to hang out with our kids and watch airplanes, which I do for like an hour every day, cause it's awesome, and that's what my kid likes.
So, I really, my great hope is that we as parent caregivers can stop reinventing the same wheels, and save each other that time and money and stress, and I know you talk so much about like, let's look at the chaos and how we can, Step away from the chaos for a minute. And the paperwork and the planning, like, that is chaos because it's never fun, and it always sits on the to do list because nobody wants to do it, but there's actually a better way to do everything.
As a pediatric physical therapist, I see a lot of families [00:06:00] struggling with exactly what you're saying, like not knowing the information, not knowing how to handle all the paperwork, not even understanding the meetings they're honestly sitting in for like IEPs and things like that.
And I'll be honest, I'm a, Pediatric PT is one of my hats and I don't even know all those answers. Like people come to me and ask questions and the best advice that I get to give are definitely from parents who have been through it. Like they get it, they've like kind of mastered what they know, they have the best resources.
So I love that you put together a book because you're a parent who has been through it and it's just so valuable. Thank you. Well, and there are so many terrific books out there that are these beautiful memoirs and you're like, I can connect with this person. There are so many great books about how to parent this situation or this challenge.
There's not [00:07:00] a book of like how to do the stuff and the paperwork and the planning and even just as you were saying all of that, which I so appreciate you sharing, because as a therapist, I'm certain you've seen a huge range of families and kids and disabilities. I felt like for so many years, it wasn't that, oh, I don't have the answers.
It was that I didn't even know the questions to ask. And so my book is, yes, there are personal stories. There are letters from fellow parents, but there's also here are the basics of what you need to know. About all the different topics, the basics, there are checklists and templates, there are interviews with experts and bullet points of what worked for me, what questions to ask yourself and where do you start?
Because most of this has just been sitting on my computer for years and like, Oh, I'll send it to a friend. Who's going to do a school visit. Oh, here's [00:08:00] my four page. worksheet that I fill out, print out and fill out every time I do a
school visit so that I go home and I can compare and if we're arguing for a different school or if our lawyer is doing so, we have the objective facts right in front of us.
It took a long time to put together that worksheet like nobody else should have to put together a worksheet like just check that off your list. Yeah, everyone's trying to figure out or take the time to do that. Now, you mentioned, like, all the hats, the demands of being that caregiver.
You also want to be mom. I can imagine just being in it. It's like a full time job. Parenting is a full time job, right? Like, that alone is a full time job. Then your job is also taking care of your child's needs, too, in a different caregiving way, right? And so my question is, how do you even find yourself?
How do you find yourself, your time to breathe in this chaos for you? I love that question [00:09:00] because whether or not we have kids with disabilities, we need to think about this and whatever your hard thing is. It's your hard thing. My hard thing might be epilepsy. My hard thing might be I am cleaning vomit out of my hair all night.
It might be I'm trying to teach my 10 year old to communicate when he doesn't speak with words. First of all, just own that your hard thing is hard. And not comparing it to somebody else's and saying, Oh, well, my kid doesn't have a beating tube, so I guess I don't have it as hard. Like, your hard is your hard.
And for me I would get so frustrated for so long when people would say, Oh, I'm worried about you. You should take a yoga class. And I'm like, I don't want to take yoga class. I'm just going to cry and everybody next to me is going to be like 20 something and bendy and going to brunch after this. And in their matching thing, and I'm just like, I, I just can't.
And what I have found. Is that I [00:10:00] need myself to build a foundation before I can go to yoga class or go to lunch with a friend or whatever the thing is. I need to view the stuff, the paperwork, the planning, the caregiving stuff as like, that is a job. And I've set up systems so that everything can and will get done so that that to do list doesn't give me anxiety.
I know it's never going to disappear. This job for me and with my son's support needs, this job is forever. And so, I've really chosen to look at all of the stuff, as this is a job, and many people have that, in addition to a full time job outside of the home, in addition to parenting full time, and it's a lot.
But, I took a step back for a very long time, instead of saying, I'm going to force myself to go to the yoga class I don't want to go to. I've said, what do I need, so that I want to, and [00:11:00] I am excited to, go to the yoga class, go for a long walk, go and wander through Target for a really long time, sometimes that is self care, cause Target is lovely, but for me, having a place for all of the stuff, you allows me to close that chapter for the day or for the afternoon or whatever and to walk away from it because I feel like I know where to pick up and I'm not letting it reach the point of overwhelm otherwise.
I need to attack that because, like, walking through Target will be stressful for me, and it should never be stressful to walk through Target. I think that's beautiful that you have created a space. I think everyone should do this, you know, no matter who your children are, really. But a place to shut it down, like a time to shut it down.
Like we all have these to do lists, some more than others, [00:12:00] but it could be looping in our heads and looping in our lives over and over unless we give it like a shut down time. Yes. And I literally schedule time for things. And that includes people like, how'd you write a book? How do you have time for that?
Yeah, the answer is very slowly, because I literally scheduled time on my calendar. I did not pick up my phone. I did not answer emails and I was working during that time and I couldn't just sit and write a book in a couple of weeks. I need months and months to do it, but I am confident there was never a doubt if I would get it done because I gave that a place on this on the schedule and I really always try to have a deep sense of what are my priorities right now. My priority right now Might not be. I'm gonna go running every morning because I'm really excited about [00:13:00] doing all of the book things and also about hanging out with my kids and I rescheduled some stuff yesterday because I just wanted to have a dance party with my kids and the kid who flicks the lights, he's flicking the lights and we're listening to the DuckTales theme over and over and that's our dance party.
And that's the priority, because all of this parenting everything, for me, that's what it's about, are these moments and the fun of it. And if you don't lean into the fun, and sometimes seek out that fun, because there's a lot that's overwhelming, then you're missing the fun in favor of with checking your emails, which is just kind of a bummer.
Time flies. And yes, we miss the moments. I mean, even tonight, I had 100 things to do before getting on with you, which I'm so excited to be here. But yeah, I worked, I had a meeting after work that I [00:14:00] went to, I had to get the kids like, I didn't have anything in the fridge, I'll be honest, like didn't have anything.
And I wasn't going to bring in. So I was like, I want hot dogs and baked beans, like, let's camp tonight, guys. And all I could think of was, like, why don't I have hot dogs and baked beans, like, all the time, because it was so good. But it was easy, it was fun, and it was not healthy, but it was yummy. Well, and also, like, what is your priority?
If your priority is to, like, we are going to eat so much kale tonight, because that is healthy, Then you will go to the store and bring your kids with you and you will get kale and you will watch them frown as they eat it and you'll be like this is great because kale's the priority. But if the priority is, I want to get us fed.
I want to make this as easy as possible and I want to have fun. It's okay to choose easy. And I think as parents, we don't choose easy often enough. [00:15:00] It's so easy to feel like, well, this person on Instagram made this bento box in the shape of the characters from this book, and I need no, like, hot dogs and baked beans.
Yes, and we all sat together because we had time because if I would have had to make something then someone had to go to dance and someone had to go, everyone had to go somewhere, right?
And we had time. I mean, it took me, what, 10 minutes to make some baked beans? But we had 20 minutes to sit and eat, and that was really nice now, you mentioned that, you know, with your child, it's a lifetime of care. This is not, you know, turns 18, see ya, have a good day, right? So how do you prepare yourself for that? Because I know just even as parents, it's like 18 sounds like the light at the end of the tunnel. You know, it's like, Oh, there's the light and then life will begin again and they'll be independent, but that's on everybody.
So , how does that feel? How do you kind of support yourself through [00:16:00] that part? Thank you. I appreciate you acknowledging that it is something that my son is 10. He will be. He will never be fully independent. He will never just go off to college by himself. He will never just get his own place. And that's okay, because that's his path.
If, if I were to say I've found some magical solution to make it all okay and make it not overwhelming at all, I would be f ing. The thing that I didn't realize in the beginning of this journey is that what gets you through all of the stuff is falling in love with your kid, not just because they're your kid, so of course you love them, but because of who they are.
I don't have all the answers for the future, including with his development and what his cognitive abilities will be, what his communication abilities will be, what his interests, his different ways he will contribute, like all of these [00:17:00] things. At 10, he has so many question marks. We're looking into all of the options for Housing, and successor
guardians, and family, and like, all of the things, if he outlives us, which, statistically, that's generally what happens, we've looked into all of the options, and we feel like we have a few things that can work, and things that we have written into our, future care plans, if we're not here, before he becomes an adult.
But, the reality is, I've made peace with the uncertainty of it, and the reality that even if I live to be 150 years old and I outlive him, I will not be as physically strong, hopefully I will always be as mentally strong, as I am today. And even today, there are some times when he needs to be physically lifted and carried, [00:18:00] and I can't do that.
He weighs well more than half of what I weigh and I'm not physically able to do that. So also being very realistic about what are my limitations and knowing that my husband and I will need to consider accommodations for if he's still in diapers when he's 60, we need to be sure that we have supports in place.
if we are not able to physically manage that. So it's a lot and I try not to have too much anxiety about it because you can make yourself bananas, but I really focus on the day to day of We have a general plan for the future, and, like, he's awesome. Like, he's, he's fun, and he makes me laugh, and he wants hugs, and he wants to take the dog for a walk.
Okay! We'll do [00:19:00] that again. And I hear that there's, it's just, there's a lot of planning. And I think in general, people don't think about that planning so early on. So I'm assuming this is also in your book too, maybe how to plan for things like this earlier, because I know there are programs out there that you kind of have to get on lists much earlier than you ever even imagine.
Many years in advance, and all parents, like, as soon as you know you are gonna have a baby, we all do the, like, we're making a baby registry, and we're visiting the stores, and this blanket's so soft, and look at this swaddle, and, like, all the things. What we should actually do before the baby even comes is we should put a will in place.
I know. And why don't we do that? Because we're afraid of our own death, is what it is. Yes, and [00:20:00] we need to talk about that. So, if we look at statistics, the two of us each have a 100 percent chance of dying. This shouldn't be depressing, this shouldn't be something we avoid, it's just science. That's how everything works, and we spend so much time avoiding thinking about that, that we are missing an opportunity to empower our children in the future, disabled or not.
We need to think about a future care plan for all of our children, that hopefully we will never have to enact, but I think if everyone had in place, the elements of their will, and that's kind of the bare minimum what anybody, um, anyone, but especially families who have kids with disabilities should have in place is have a will so that when the time comes, and if you're not there, especially unexpectedly, [00:21:00] there's a plan in place so that you are empowering them to follow your wishes and also to be supported in living their best lives.
Yeah. I know. We did not do a will until, oh gosh, I think our kids were like, you know, maybe fifth or sixth grade. It was, it was old, like, thank goodness, right? And there are very simple ones, just FYI, not to turn dark here, but there are very simple ones, even online, that you can just fill out, at least tell people where your kids are going.
But exactly. Because that is important. Yeah. Yes. And so that there's not, , family members coming out of the
woodwork trying to sift through your affairs and your jewelry and stuff. By the way, I have no jewelry. I was going to say, the only thing I cared about was my kids. Like, where are they going?
Everything else is up for grabs. Yeah, but any money, is somebody trying to grab money that you're like, no, that goes to the kids. It's actually not depressing [00:22:00] because we should all do it. And if we all talked about it, it wouldn't seem depressing and I have found as has everyone else I've talked to, it's intimidating until you actually do it.
And then once you're doing it, you're just like, you know what? I checked that off my list. It's a relief. Yeah. It's a relief. Yes. All right. So brighter and lighter things. Okay. Okay. So, from your research, you've done so much research on this book, you have so many resources in your book. What do you want, like, every mom to know?
What is one, like, outstanding, besides the will, every mom should know? Every, every human should know this. And the fact that I had to learn this on my journey, especially as I was writing this book, is kind of unconscionable. And it's. It's embarrassing to say out loud, but learn about disability from disabled people.
It seems like that should be the standard, but [00:23:00] weirdly, it's not. Disability seems so scary because The vast majority of us are not in community with disabled people, you know, disabled people, they, their disabilities might not be visible, they might not feel comfortable sharing that information with you, many disabilities are not visible, but following organizations and individuals on social media teaches you about disability, you learn that, oh, some of this medical stuff can be scary, you learn that, oh, some Oh, but you're in a wheelchair, and you're a two time White House appointee, and you have this awesome career, and oh, okay, wheelchairs are not so scary after all.
Um, whatever it is that you learn, it takes so much of the fear and stigma and all the things out of it whenever you are learning about it from the people with the lived experience. That is beautiful. And it's funny because, you know, I work with a lot of [00:24:00] kids, and kids will ask kids, they'll just be like, hey, what's that for?
Hey, what's going on with you? You know, like, just, and they're willing to express and talk, and it's like, beautiful. But adults, yeah, they don't ask the questions. No. Adults, and I think so many adults, grew up at a time in our generation, we are trying to outrun this of when it comes to disability, we were taught, Oh, don't stare.
Don't look at that person, just ignore them. No one, like no one wants to be ignored. That's like the worst. And also, I have a kiddo who is very, literally, loud and proud with his disability and he makes a lot of sound and he does look visibly different than the other humans in the room. Don't pretend you don't see him.
I know you see him. Like, it's not a secret. Don't pretend you don't notice his disability. Of course you [00:25:00] do! Be genuinely curious about other humans. And they're going to be curious about you, if you're asking my kid about his feeding tube, great, ask him about his feeding tube. And we might ask you about your sandwich, because we might be like, that's a weird sandwich.
Is there a question, just as a parent maybe, because since your son's not like on the podcast, but is there a question that you, you wish parents or kids would ask? Can I buy you coffee? Oh my god, me too. Done! Yes, the answer is always yes. What is a specific question? I think that really varies depending on the situation and the question I, I guess to overall answer this that people should ask is the thing that they're wondering about in their mind and wanting to ask about, ask that thing.
But ask that thing in a way that doesn't make you sound like a jerk and doesn't [00:26:00] make you sound ignorant and it's okay to say, for example, Hey, I'm curious about that tube in your kid's stomach. And what's that all about? It's so different than whoa, what's that? Or blah, don't stare at that. , ask the questions.
Think about how you ask them. If you approach a stranger and say what's wrong with you because of their physical disability? No! Like, no! Like, just don't do that, ever. Right, and also I guess going back to like how would you want someone to ask something about you? Yes, yes, and someone's disability is their personal medical information.
Yes. So, do you want someone saying like, hey, when was the last time you had a UTI? No! No, it's none of their business. And also, as you mentioned, my son isn't here. We've discussed all of the things that I speak about publicly. There are many things I don't speak [00:27:00] about publicly for all parents. I'm thinking about consent with our children and especially with our children who are complex communicators, whose communication is emerging.
There are, there are things about our lives that I think is appropriate to be private. My child's life is not content for others to consume, and I don't want my kids to become teenagers and hate me because I was telling these hilarious stories that are actually kind of embarrassing for them. Yes, I agree.
emailing your child's teacher and saying, Hey, I wanted to check. When my child is receiving their therapies during the school week that gives you information if it is putting on your calendar for January of every year like I do to email your assistant principal to schedule your IEP meeting so that you can get the date that works for you a couple months later.
Put that on your calendar as a recurring. thing for every single [00:29:00] year. It alleviates so much stress down the road when you're able to put systems in place, but don't try and tackle all the thing at once. Break it down into the smallest steps you can and do the easy things because those wins will add up and then when you're tackling the things that are more challenging, you're like, oh, I've got this already.
I'm good. That is perfect. I love that. Well, where can the listeners find you and your book? So my book is available to order at all the book places. Amazon, Target, Barnes Noble, independent booksellers. And my website has all my social media and everything.
And it's kelleycoleman. com and that's K E L L E Y coleman.Com and I can have a link in the show notes as well. So people can just grab it from either your website or maybe one of the other sites as well. Great. Thank you. Well, thank you, Kelley, for coming on and talking to me today. You are so much [00:30:00] fun and you just have a great vibe about you.
So it's just so lovely to be around you. Thank you so much. I love the community that you're creating and just this space for people to take a break with. all the things. So I appreciate all that you are doing.
Thank you all for joining us tonight. Don't forget to grab your copy of Kelley's book. The link is in the show notes. And until next week, keep making this time for yourself because you matter.
