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Episode 10: Ashley Harris Whaley and Dom Kelly
235 Plays1 month ago
Cerebral Palsy Foundation on Instagram: @yourcpf
CPGU on Instagram: @cerebralpalsygrowsup
Follow Ashley: @disabilityreframed
Follow Dom: @the_tattooedjew
Credits
Host: Alexa Orban
Executive Producers: Ashley Harris Whaley, Rachel Byrne
Producers: Katy Gaastra, Kyle Khachadurian
Graphics: Briana Raucci
Recommended
Transcript
Introduction to Podcast and Guests
00:00:10
Speaker
Welcome to Cerebral Palsy Grows Up. Join us as we dive into the unique experiences and stories of adults living with cerebral palsy. We hope that as you listen, you feel a sense of camaraderie and community. Today, we're joined by Ashley Harris-Waley and Dom Kelly, conversing on all things parenthood. Ashley Harris-Waley is an author, speaker, speech-language pathologist, and disability educator and activist.
Background of Ashley Harris-Waley and Dom Kelly
00:00:37
Speaker
She leaves the CPGU project for the Cerebral Palsy Foundation and is the founder of Disability Reframed, an online platform focused on changing perspectives through education and conversation.
00:00:51
Speaker
Dom Kelly is the co-founder, president and CEO of New Disabled South and has been organizing in the South since 2009, committed to building a better future for disabled people in his region. He is one of a set of triplets born with cerebral palsy and has been a disability advocate since he was four years old.
Exploring Parenthood with Cerebral Palsy
00:01:10
Speaker
I was lucky enough to have an honest conversation about parenthood with both Ashley and Dom. As a person who one day hopes to become a parent, I had questions, and they had many stories and answers. This episode is one not to miss.
00:01:24
Speaker
Well, hello everyone and welcome Ashley and Dom. I'm so thankful that you're both here today um on the Cerebral Palsy Grows Up podcast. And today I think we're talking about a topic that is very relevant, um especially as we age with CP and and growing into
Dom and Ashley's Parenting Experiences
00:01:44
Speaker
parents. um So both of you are parents to, I'm sure, some amazing and wonderful children, which I'm sure you'll tell us more about throughout this episode.
00:01:53
Speaker
um But I also would love for you both to give yourselves short introductions and then we'll start talking more. ah Amazing. Dom, I'll let you go first.
00:02:05
Speaker
Great. Well, Dom Kelly, I am a dad, a um my My day job, I am the co-founder and CEO of an organization called New Disabled South. We do disability rights and disability justice work in 14 southern states. I'm a dad too. ah about to be 14 month old daughter named Mahalia and um I live in Atlanta, Georgia where it's extremely hot but extremely beautiful and a great place to raise my kid.
00:02:42
Speaker
Love it. I'm holding the South down on this episode, by the way. like I'm loving the representation. My name is Ashley Harris-Waley. My day job is that I'm the director of adult programs ah here at CPF. I also am the founder of Disability Reframed, which is just an online space for education and kind of reframing, see what I did there, ah how we think about disability, talk about disability, look at disability from a societal lens. I'm a mom to an almost 15 month old daughter named Ingrid, her life, my husband is Lucas, and we live in the beautiful ah mountains of western North Carolina. So a lot of nature for this indoor cat, but
00:03:35
Speaker
You know, we love it, it's a great place to be and I'm just happy to be here talking about this topic.
Challenges and Adaptations in Parenting with CP
00:03:40
Speaker
Yeah, so glad that you were both able to join today and just give this perspective because I know that so many of us share pieces of our lives on social media or, or you know, publicly as our stories, but also, you know, when you dive into it, like this is a pretty vulnerable subject and something that I think we all want answers to, we all want to discuss and It's not to me that I've seen talked about enough. um So I'm really excited to hear your perspectives. And you know for me to one day be a mother, I mean, it's something that i I'd love to be. and And so it's a question that I have um you know as as somebody who would love to build a family. um So I'm so looking forward to you know hearing your perspectives and glad that we can have um both of you here today. so
00:04:29
Speaker
I'd love to kick it off. um And Ashley, you can start with the answer to this question. um But what's one thing that you thought was going to be um hard or easy about becoming a parent? um And you know what has this taught you? Oh, well, I don't think I thought any of it would be easy.
00:04:51
Speaker
ah Yeah, I don't think I went into the process thinking any part of parenthood would be easy. um And for me, I i dealt with um like ah an infertility trick for about four years. So even just getting to the point of of parenthood was there was no easy part about that. But I think what has surprised me is how easy it is to be her mom. Like it is a very effortless state of being. And I don't mean to say that like
Public Perception and Future Conversations with Children
00:05:32
Speaker
the acts of parenting are always effortless. They're definitely not. But as far as like just feeling how
00:05:41
Speaker
In sync, she and I are together and the like joy that I get from caring for her and how natural it all feels.
00:05:53
Speaker
how how much ease has come with that has taken me by surprising in a really nice way. um and I would say as far as the sort of inverse of that, i I think what has been harder than I sort of was able to anticipate without a frame of reference. and Dom, I'm really interested to hear your take on this as well. I have i said this to someone the other day, I've never felt so disabled.
00:06:23
Speaker
in my life as I have the last almost, you know, 14, 15 months, like not even during pregnancy. that That doesn't compare to how i feel how disabled I feel and how aware of my own physical limitations and how much harder things are that should just be so simple and are so simple for most people. That has really come in pretty sharp relief.
00:06:52
Speaker
um So I'm definitely interested, Dom, in your answer to this question. Yeah. no Well, I think we're we're similar in that I also didn't expect any any of this to be easy. um I have an identical brother who also has CP who is a dad
Fears, Challenges, and Affirmations of Disabled Parenting
00:07:12
Speaker
to two kids and was thankfully able to ah kind of watch him, ah his daughter's about to be five years old. um And, you know, we have been able to watch him parent and knowing some of the things he's gone through, um you know, kind of anticipated um a little bit of it, knowing that, ah you know, parenting in general is not easy. um And parenting with a disability um is even more complex
00:07:44
Speaker
um So yeah, I don't think I anticipated anything to be easy. I think I um ah you didn't anticipate the impact of the lack of sleep, um especially in the first like six months. um And I can very much relate to that never feeling so disabled. um And you know of course, ah I would say my wife did the hard part, um ah giving birth, being pregnant. um And ah and you know we are you know we're parents and we're a couple who, um you know we we we both hold the same amount of responsibility when it comes to taking care of our daughter, taking care of our house.
00:08:32
Speaker
um And you know it has been difficult since since my late 20s, and I started to feel the impact of of aging with CP. um And you know now that's like you know on steroids, so to speak, as a parent. Now my kid's mobile. you know At first it was like, you know she's a baby.
00:08:59
Speaker
you know we can you know she can kind of Chill on my lap on the couch or you know, which is I can't even tell you how it's still exhausting to just like be chilling with a baby um ah but once they're mobile it is a whole new experience and now she just wants to crawl around the house and pull everything off the shelves. and it's you know My mobility has declined, um you know and I think the lack of sleep um really impacted um you know my my muscle tone. it's ah
00:09:34
Speaker
You know, I definitely have more spasms in my legs. um I notice more pain. um i I can't stand um independently for as long as I used to be able to. um You know, picking her up is getting more is getting more difficult as she's getting bigger. And um you know, so all of that, i I just so agree with you that I feel I've never felt more disabled than having been having a baby.
Healthcare Needs and Hopes for the Future
00:10:01
Speaker
Um, and you know, I think that is the case for most parents that I know, uh, with, with CP. Yeah. And I think that, you know, when, when we really put into self care into ourselves, sleep and that rest and recuperation is so important because we use on average three times more energy than the average person. So.
00:10:24
Speaker
not only that like then our sleep to me I can speak for myself I can sleep for 10 11 hours after a long day and still wake up feeling exhausted so to have that that lack of sleep and then to still be able to hopefully stay as mobile as possible I mean it's it's a big load um to to put on as a parent um but ra yeah I'm glad you brought up self-care yeah well and in your time air Exactly. Your time is not your own. as now and you Never again um is your time your own. And I think like it will shift and change as they get older and they need us in different ways. But I i said this recently, like I've spent the last year fighting for
00:11:13
Speaker
Literally like just a shred of the bare minimum of taking care of myself Like and I feel like a year and some change out. I'm just now getting to the point where Taking care of myself can look more look like like more than just taking a shower every six days like you know, I mean you're you're in the beginning you're truly like just surviving and you,
Conclusion and Acknowledgements
00:11:43
Speaker
and, and I don't know if you feel this way, Don, but I can definitely tell that like for the period of pregnancy and then sort of that like initial six to nine months of survival mode.
00:11:55
Speaker
I haven't taken good care of myself and I can tell like, like it shows it's very obvious in terms of like my mobility and pain levels and you know, that like it has taken a bit of a toll, not that it hasn't been worth it. I would literally do it all over again without a second thought, but it there has been a cost to that. Absolutely.
00:12:21
Speaker
Yeah. And i I think that's a big topic of conversation too, is like, you know, where you utilize, you guys are utilizing that extra energy. I can't put myself in your shoes yet, but you know, it's that extra energy that you're using. And on top of that, all of the adaptations that you're making as a parent, um, that non-disabled folks have as parents. So, you know, what are some of the adaptations that you think that you've added in your day to day in order to parent?
00:12:49
Speaker
Yeah, I mean, I i think for me, i I have to find ways to sit, to not be on my feet. ah yeah I am like a very part-time ambulatory chair user, um and you know I haven't been keeping my chair in my house because I haven't really needed to, but lately I've been realizing I probably need to do that um because it it's ah it's just been more difficult for me to even just be, actually my wife and I were just talking about getting a um like like a rolling chair for the kitchen for when I'm cooking um because I i ah cook for all of us and um just standing and cooking now is like so much more difficult. um
00:13:35
Speaker
So things like that, that like before, um, before having a kid, I maybe really didn't, you know, I, I'd use the chair when I was out, um, and needed it. Um, you know, I use my forum crutches when I'm out, but like in the house, I didn't really think I needed many, um, many adaptations. Um, and you know, now I'm recognizing even just the amount of time I spent on my feet is, uh,
00:14:02
Speaker
is is a problem. um So I would say that's probably probably the the main one for me, um is really just like finding trying to find opportunities to sit. um And I will say that like when she was ah a baby, um she she really wanted to be held while I was standing. like She didn't like for me to sit, so she liked to me to walk around.
00:14:27
Speaker
um now you know she doesn't really she can't i can't really hold her for long periods of time she just wants to get on the ground and crawl or or you know all that stuff and so you know that's not the issue but now the issue is like i have to really try to like if we can get can stay contained to her room and play great like if she wants to go out i'm just chasing her around the house so um or around the yard or wherever we are um so that that's uh with with the old challenges um of, you know, a year ago, are not being an issue now come new challenges as she gets older. I think it's just going to continue to be that. Just when we think we've got something figured out, they go and change on you and you have to figure it out all over again.
00:15:13
Speaker
I think there are a couple things that have been ah big for me as far as I guess you call it an adaptation. So we live in a two-story house. um And there was a sweet spot there for a while where i where like she wasn't so tiny and new and fragile that I felt um pretty safe carrying her up and down the stairs by myself.
00:15:34
Speaker
and now I can do it but sis is heavy and it's hard so we have like a changing station in her room upstairs but we also have one downstairs and a stash of like clothes and stuff so that I don't have to make 10 million trips.
00:15:50
Speaker
up and down the steps. um We have like a pretty large living room and so we literally will just barricade her in there with Ottomans so she doesn't get free reign of the house. She gets free reign of a very large room but I'm not having to chase her also because the stairs like it's for her safety too you know I'm keeping her in an area that's safer um and she's a little bit more of a container baby I would say then probably some babies of non-disabled parents like she has a little activity standing table that I put her in if I'm cooking or something so that she can't move and she's you know relatively stationary. So we just try to you know finagle things like that to make it work. I feel like I rely on a stroller
00:16:38
Speaker
a lot more than the average person. So I have two, I have like the big Cadillac one that is a little bit hard for me to maneuver by myself but then I have like a really small portable one that's very lightweight and so when she and I are just going out in the car like without Lucas or somebody else I just take the little one and I just take her like immediately from her car seat and put her in the stroller so there's no danger of me like falling with her trying to like carry her into a store or something like that but a consequence of that is like I can't grocery shop with her really by myself because I can't like get her into the cart like without the I can't have both the stroller in the cart I have to pick one so you know there are a few things like that that I haven't figured out but I think you know we're always learning
00:17:35
Speaker
Yeah. Yeah. And I think that that's something too. It's like when you guys are home, you're able to have a setup that's comfortable, it adapts and it works. But then once you go out your front door, it's a whole new world where you know you have to have so many adaptations and and navigate those spaces.
00:17:54
Speaker
um So Ashley, like you brought up a good example of the grocery store, um but Dom, I'd love to hear you know some of your um experiences in certain public places, and also some perceptions as well, um navigating life with your kids.
00:18:09
Speaker
Yeah, i am I tweeted recently um asking folks to give me some suggestions for um snarky comebacks when somebody asked me what happened to my legs, because it happens so so frequently. It happened like twice that day that I tweeted that. um And ah so you know that tends to happen a bit, especially since I started wearing braces again. you know I wore braces till I was 13 and then didn't wear them. And then now you know now when I wear braces, I mean, you could tell when I walk. I have CP, but like the braces are really like, look at my legs. um and ah And so yeah, I get that a lot. um I think
00:18:48
Speaker
Um, with parenting, like I haven't necessarily gotten any comments about make my disability and being a parent when I'm out with my kid. Um, I will share, I'm sure you'd be fine with me sharing this, my brother had this awful experience. So I'm just kind of, you know, anticipating might happen to me at some point. Um, but he was walking into a grocery store with his two kids and, you know, he was.
00:19:12
Speaker
He was walking, like he his he has a limp and um very, very noticeable, and somebody yelled and like basically thought he was drunk, um ah bringing his kids into the grocery store. and ah you know He had to be like, hey, no I have CP, this is how I walk, I'm perfectly fine.
00:19:32
Speaker
um And, uh, but it was a scary moment for him. And, um, I would not be surprised if that was something that happened to me, um, at some point when I'm out with my kid. But that's also a story that I've heard from other folks, even without kids, that like,
00:19:48
Speaker
people think they're drunk or people question why they're walking, um you know, that way. And I you know i think that's, ah I mostly get the questions about what happened to you. And I'm really looking for the perfect start to come back for the next time I get that question.
00:20:04
Speaker
Yeah, I was ah chatting with another friend who has CP today and we were talking about a good response and i I've waited for a time to say to someone, what an odd thing to say out loud. And I haven't had a moment, I haven't had a moment where I've had the courage to respond with that question. I did so good. I'm confused that.
00:20:27
Speaker
But I think there, you know, there, there will be, I mean, even as just a disabled woman handling that question. And then as your children age, they're hearing those responses as well. Um, but I think that that also comes up to as, um, your girls grow, you know, like, what are some of the things that you'll talk to them about?
00:20:50
Speaker
about your disability um because you know it's it'll have to be something that's in layers and i'm sure I'm sure you both have thought about this at large. Oh yeah, a lot. but you You can go ahead if you want to.
00:21:05
Speaker
Yeah, I mean, i i I'm gonna tell my kid everything. um I'm gonna first of all make sure that they use the word disability. um I don't wanna sugarcoat anything. um i you know she's She's curious about my braces. um i I wear, I kinda keep my shoes like on my braces. um Part of the reason I wanted to get my braces off so badly when I was 13 is because I wanted to wear like cool pants and shoes. Yeah. um Mine went into the trash can. um like merk im reading Immediately, immediately in the trash. Yeah. yeah
00:21:45
Speaker
Nowadays, I have been able to find cool shoes that fit my braces because I like size them up like like two, I think I get like size 14 shoes just to stick my braces in. Um, but I also buy these, these shoes that are made for braces and they, they like look cool and I wish I had them. Those options have come a long way since we were like middle schoolers and had to wear like giant ugly shoes. Yeah.
00:22:12
Speaker
It's traumatic. um i also feel like I think it's why I'm still attached to to skinny jeans um because I i like you know wanted to wear skinny jeans in middle school um and and I couldn't. And so I wear my braces outside of my jeans because I'm just not going to give up my my skinny jeans. um But I say that because my braces kind of stick up in my shoes um and they sit next to our shoe rack.
00:22:38
Speaker
um She likes to go over and play with them. um And so I think she's curious about what this is. and But I think like it'll just be normal for her. um you know i I hope and anticipate that disability will be um something that she doesn't... you know As of right now, and yeah know I don't think she's disabled. um But you know hopefully it's not something that she um you know feels we're talking about, asking about. um So many people in my life are disabled, so she'll grow up around disabled people. um I want to be honest with her about... that I have, you know, daddy has days where his is so ah spoons are low, like I'm gonna probably use the the term spoons with her and, um you know, I'm in more pain than other days or this is why I walk this way. And um I think it's, for me, just so important for me to just be honest with her um and for her to see disability as a normal thing, um a normal part of the human experience, instead of trying to,
00:23:41
Speaker
you know, use euphemisms or sugarcoat it, um you know, because she's going to go to school probably and see disabled kids, physically disabled kids, and um and I just want her to, you know, know that that's normal and i I'll say like for me as a kid,
00:23:58
Speaker
I had, I'm a triplet. So my triplet brothers had CP. Like we, we saw each other all the time and my mom worked in the business. She was like an early intervention. She owned an early intervention agency. And so like I was around disabled kids constantly. Um, and so it was normalized for me. Um, and, and I, I just want her to have that experience so that, that, that's my intention with her.
00:24:25
Speaker
Yeah, i I feel like I kind of had a and polar opposite childhood experience. Kyle and I talk about this a lot. I was the lone disabled island in my life for a long, long time in a really rural place, in a really small town, and which had its advantages, right? I truly was like so accepted as to who I was. like Nobody cared.
00:24:49
Speaker
it It wasn't like it was a bad thing, but I think the the thing that was missing was that sort of sense of camaraderie and feeling like there were other people out there that... were like me. And I really, like you said, as of right now, I don't think Ingrid is disabled, but I know that she just by default is going to be around it all the time. And I just hope that she will grow up to be somebody for whom it is really just a normal part of everyday life. I think
00:25:22
Speaker
what I sort of perceive as the biggest challenge there is it's not anything on my and Ingrid's level. I know we're going to navigate that just fine and I'm going to answer her questions and explain everything and yeah all that good stuff. I worry more about the macro, you know.
00:25:42
Speaker
i I've said before that I think sometimes the biggest challenge of my life is that, and I think this extends to my disabled comrades, but we the world does not see us as we see ourselves.
00:26:02
Speaker
um And I think that my biggest challenge will be making sure that she sees me not as the world sees me, but as I see myself and really instilling in her that sort of like inner peace and inner confidence that comes with really like knowing yourself and being secure in who you are.
00:26:29
Speaker
even if the world on a literally daily basis like makes you feel like you have something to prove. Um, so I think that will be the great challenge to navigate, but I think we'll handle it. Um, as far as just me and her and mommy, why do you walk like, you know, I don't, I don't worry so much about those kinds of questions. Cause I know we'll be able to handle that just fine. It's more, I don't want the world.
00:27:00
Speaker
polluting the way she sees me or someone else with a disability. um Those are those are the things that keep me up at night. Yeah. And I think like ah what I love how you both brought up is that that disability really is is a human experience. But so your kids will be able to see that firsthand. um And so they'll be more open to just those experiences overall, too.
00:27:28
Speaker
um And just the way that you both so eloquently put like how to traverse these situations. I mean, it's something that you'll all be learning together. um But Ashley, you know, like to your point that we really see ourselves so differently, it is true. And and so it's just, you know, maintaining that as as we age, I think that'll be something that's so important um as well ah as families grow. so um I think it's just so important to remember who we are as people um and that's disability included or not included, right? So um just absolutely amazing from from you both. um And so for disabled folks like me who are on the fence, because I can definitely say that I am, um you know, it's a conversation that my fiance and and I have all the time.
00:28:19
Speaker
um What would you say to somebody who wants children but they aren't sure if they'll ever be ready for parenting? Who wants, you want to take it first or you want me to take it? I feel like you should take it first. Um, cause I, I, I'm really interested to hear your perspective as a person who has given birth. Cause that is like a whole other. All right. I think like the big takeaway is, and this is coming from somebody who worked like a full-time job for four years to become a pregnant lady. Okay. Like you are never going to be ready to be a parent.
00:28:55
Speaker
ever ever ever like you might as well just you might as well dispel that notion from your mind like no one is ever ready because it is truly something that you cannot prepare for you can read that the books you can buy the stuff you can take the classes you can follow the people on instagram you can talk to your mom or your dad or your grandma or whoever but like until you are in it the frame of reference does not exist And it is so different for every person. So I think, you know, for me, for many years, I would say being pregnant is my worst nightmare. I'm terrified to be pregnant. I don't know what it's gonna do to my body. I am scared. less Like, what will my body look like when I come out of this? And then that was replaced with a very real fear of, oh, well,
00:29:51
Speaker
Well, it's actually looking like that might not be in the cards for me after all, so perhaps I've worried all for not. And then I, you know, and then we got there and in many ways it was much easier physically than I ever anticipated that it would be.
00:30:08
Speaker
Now, I went into it from the very beginning saying, I will have a scheduled C-section. I am not going to destroy my pelvic floor for giving birth. Like, sorry if that's TMI, but that's what happens when you give birth, even when you don't have CP. So, I just knew enough to know that we weren't even going to travel down that road.
00:30:30
Speaker
She was gonna come out on schedule and that was the best decision I could have made for myself ever. Showed up at the hospital at 5.30 a.m. by 8.30. She was out in the world. um like as eat That part you know like was as easy as it could have been. Was I tired? Yes. Was I in pain? Sure. But I knew it was temporary, right?
00:30:55
Speaker
But what I didn't expect, the physical effects of it are lasting. Like, my feet will never be the same. I did not have foot pain ever. Now, like if I walked a lot or something, sure I would have foot pain, but I think that is everybody. um But like, I cannot walk without shoes on, without my feet hurting.
00:31:20
Speaker
and and no doctor can really give me an explanation as to why or an explanation as to what to do about it. So while I say like, if you wanna have a kid, go for it. Like it's worth it, 10 fold, 100 fold. As a person who has grown a person and then burst that person, I would be like lying if I said my body did not sustain any lasting consequence from that. Now, was it better than I thought it would be? Yes. was it as bad as i thought though was the Are the consequences quite as bad as I thought? like No. From a vanity perspective, like I don't have stretch marks. It's great in so many ways, but like my body will not ever be the same.
00:32:13
Speaker
It just won't. And I think that's true of any person who gives birth, but I just think that the CP adds another layer. Like there is a level of mobility that I don't think I will ever get back.
00:32:28
Speaker
And I think that's something you just have to be honest about. Like it's a massive physiological change unlike anything else. And if we want to talk about not the physical side of it, I think the other thing that a person needs to know going into parenthood, whether you're going to be the birther or not, like is the mental load is real.
00:32:57
Speaker
And I'm saying that because we all live with a higher threshold of a mental load just by virtue of having cerebral palsy. And all of the, I don't know about y'all, but every move I make requires thought, quite literally. And you're just adding another very substantial mental load on top of that. And I just think that's something that doesn't get talked about enough.
00:33:27
Speaker
is like The easiest part about parenting is laundry and diapers, okay? Like that doesn't even make a blip on the radar in my day-to-day life. and I could not care less about those kinds of tasks. It is the mental load of parenting that I think particularly disabled people need to be ah a little bit more aware of because I surely wasn't prepared for it.
00:33:55
Speaker
And thank you for sharing that. i um you know i'm i'm not I'm not the birthing parent. And so you know that's not something I can even fathom. um I mean, I've watched what my wife has gone through as a person who does not have CP. um And I don't think I could ever do that, let alone and have CP on top of it. It ain't for the week. It really ain't.
00:34:25
Speaker
Oh God, I can't even imagine. And I mean, I think like, you know, what I would say to somebody, I mean, I would say this to anybody that it is such a, it is such a deeply personal decision whether or not to have a child for so many reasons. um You know, but the the reasons that keep me up at night are things like climate change and like political turmoil, like that stuff, whoo, like,
00:34:53
Speaker
we want you got to load Like what kind of world am I going to leave her in? Exactly. Oh, I lose sleep over that all the time. I'm glad it's not just me. Know that I'm awake like two hours up the road thinking about same things that you're thinking about.
00:35:08
Speaker
For real, you're not alone. And I think that's, I mean, we we went through it before we we decided to to to try to have her, um you know, to if this is what, if we felt weak we could bring a kid into this world, like that's a really, really personal decision. um You know, what I'd say to a disabled person, especially someone with CP is like like, you really have to talk to parents with CP.
00:35:38
Speaker
um to understand their experiences um because it's not typical. um and ah you know There is the reality of, like like you said, Ashley, the like added mental load, um the added physical um impacts whether you're the birthing parent or not. um you know i i think I remember talking to a friend of CP who said you know they weren't quite sure um But having a kid and one of the reasons was they were so afraid of falling with the baby in their arms and um And I you know knock on wood have not had the experience of falling with her in my arms um But I remember my brother calling me with his daughter his first his first baby um sobbing sobbing to see a tripped and he tripped and fell and And she was fine. He was fine. um But he he felt like he he hated himself. He hated his CP. like it was He went you went through a spiral. um And
00:36:47
Speaker
You know, that that's a or ah reality. um you know I remember being up with Helia in the middle of the night, trying to rock her back to sleep, and I started having issues with my knee um right around that time, and my knee gave out.
00:37:03
Speaker
and I had to like catch myself um and not fall. and um and it just was it may I've had knee issues since and my um you know it's been harder and harder to lift her up and hold her. If I could go back and do things differently, would I like not have a kid? No, absolutely not. But like that is something that I didn't think about. Truthfully, I didn't think about the the physical impacts of having a kid. So all of that, I think, are just um factors. um things Added things to think about as someone with CP. um But ah you know having a kid is the best best thing that's ever happened to me. So I wouldn't trade for anything. I fell with Ingrid once. She was probably
00:37:49
Speaker
Oh gosh, four months old. So she was still like a ah little squish. Like, I felt like I fell with her now. It would kind of just be like, eh, she's pretty hardy um at this point. And I i think I went into like a similar experience with your as your brother. I was already dealing with postpartum um anxiety and postpartum OCD. And I fell with her and I I spiraled out for a little bit and was like oh god like she'd be better off if she had like a different mom like I don't like the rational part of my brain knows that that's like 110,000% but it's hard to feel like you're failing your kid
00:38:38
Speaker
by doing your best, you know, like it's hard to feel like there's going to be some sort of detriment to their life because you're disabled. And there, there won't be 99.999% of the time, right? Like we add value to the lives of our children. Period. Full stop. End of story. I add value to Ingrid's life. You add value to Hailey's life.
00:39:07
Speaker
ah But there is that tiny sliver of the pie where you can allow self-doubt to creep in when something like a fall or a knee give out happens, or you can't take her to a playground by yourself because you can't don't feel safe doing that. Or what you know whatever the thing is, like there is that opportunity for self-doubt and self-criticism to sort of creep in.
00:39:37
Speaker
And I don't think we acknowledge that enough. like I don't think we acknowledge that that self-doubt and self-criticism, even in that moment, can feel very valid. And we're not doing ourselves any favors by pretending like that's not a part of disabled parenthood.
00:39:57
Speaker
Like we have physical shortcomings and physical limitations. That's just the truth at the end of the day. And some days we're going to roll through them without that sort of rearing its ugly head. But that's not going to be the case all the time. Yep. Absolutely.
00:40:16
Speaker
I don't think that you two kind of put together, you know, the perspectives that you did. I thought it just, they came together so great because it's like, you know, through all the fear and the obstacles and the day to day, you both said, you know, just parenting through your perspectives has been something absolutely amazing for the two of you. And I know, Dom, you were saying, you know, have conversations with Folks that have CP and her parents and this is now that resource for people to come to when they have those questions because you know So many people just don't share these pieces and it's something that is so important to talk about
00:40:55
Speaker
um And I hope it opens the door for more people to feel the same way, too. um But, you know, as we have spoke of many things, a question that we're asking every single episode um is, what's the number one thing that you want to see change about healthcare for adults with CP? And I think that this could fold into, you know, experiences pre or post becoming apparent.
00:41:20
Speaker
Oh, I just want to see some CP specialists for adults. I i want to see a physical therapist to understand CP. they don't have to to teach about CP to a physical therapist that seems absurd to me. um Yeah, i I want doctors who will understand and take it seriously. um I mean, you know I'm sure this is talked about constantly here, but ah you know the narrative that CP is a childhood disability um drives me up a wall. um
00:41:53
Speaker
it's It's so frustrating, and and you know i I want to see that change. I want more kids with CP to know that um as we age, that CP does progress, that the brain damage doesn't progress, but the physical symptoms of our CP very often do. No one told me that when I was growing up.
00:42:21
Speaker
and I had to learn on my own um and i wish that I wish that I had known that. um So I would like for doctors, I would like for PTs, I would like for parents to be able to give that information honestly to their kids and I would like for us to be able to have CP specialists we can go to that aren't like just in New York. Um, because I can't afford to get on a plane to go to New York for a doctor's appointment. Yeah. That'd be my wish. It's great. I guess I'm going to take a little bit of a cop out answer for this question, given my job, you know, I want to see all of it changed. Like.
00:43:05
Speaker
All of the things you talked about, Dom, I i think it's gonna take us some years, but I think we are gonna get there. I want accessible specialists. I want educated specialists and primary care providers who have our, you know, have a best practice standard of care for adults with CP. I want more research into what it is like to age with CP, not just from an orthopedic perspective, but from a whole body system perspective.
00:43:41
Speaker
Yeah, the the whole landscape of it has to be changed. We can't just be picking and choosing ah bits and bobs. And that's what that's what CP grows up is all about. So i'm we deserve it. you know i mean we honest What we're asking for is the bare minimum. like Truly, we're asking for appropriate health care. That is ah the bare minimum that we need to function as people and to age as gracefully as we possibly can. um And I think we're going to get there.
00:44:11
Speaker
ah Truly, truly do. Yeah, ah it's true. And it's exactly, you know, it's our voices pushing for that change. Unfortunately, it shouldn't have to be this way, right? But I truly think because we're able to come together, I mean, before social media, I felt so isolated with my disability.
00:44:30
Speaker
to the point that I didn't even know if I would call myself disabled. And so, you know, putting myself into that perspective to then say, okay, as I've grown, how much that's changed. And to then be alone, I haven't had care in so many years, and to step back and say, okay, now we need all these resources.
00:44:52
Speaker
And I have to go cherry pick myself by hand all of these people that become my care team. um And i I don't think that that will end. But you know if we continue to to leave that mark for the millions of people that have cerebral palsy that are also growing up, um you know we can make that difference. But you know I totally agree with you. It's the bare minimum for us to just be able to have care and for people to realize truly what cerebral palsy is.
00:45:20
Speaker
so um but This conversation was absolutely wonderful and I can't thank both of you enough for just sharing like from your hearts truly your perspective through parenting and I think we could probably talk about this subject for hours and hours.
00:45:36
Speaker
um But I love every tidbit that you had given. um And I'm looking forward to just you know learning more through your experiences with parenting. um But today, I think this is where we'll wrap our conversation. um Dom and Ashley, thank you so much for bringing your diverse perspectives here. um And as we continue to grow, Cerebral Palsy grows up, I think there will be so many stories that fold into this exact conversation. And so it was something that was needed. Thanks again.
00:46:06
Speaker
Thank y'all so much. Thank you for listening to this episode of Cerebral Palsy Grows Up, the podcast. This show is produced by Ashley Harris-Waley, Katie Gastra, and Kyle Kechedorian, hosted by Alex Orban and its logo was designed by Brianna Rachey. We'd like to thank our listeners for being such a valuable part of our community, and we'd also like to thank Ashley Harris-Waley and Dom Kelly for their time and expertise. Don't forget to subscribe to and rate Cerebral Palsy Grows Up the podcast from wherever you get your podcasts. And please follow Cerebral Palsy Grows Up on Instagram and TikTok to connect with the project and stay up to date.
00:46:37
Speaker
Thanks again for listening and we hope you'll be back for our next episode.