Intro: Raising Disabled

Episode 1 - Raising Disabled 

Deonna: [00:00:00] Hey y'all. I'm Deonna. And I'm Rhandyl. And this is Raising Disabled where we openly talk about parenting our disabled kids and the challenges and triumphs that we've experienced along the way. 

Rhandyl: If you are a parent of a disabled child or have wondered what it's actually like and wanna make sure everybody belongs, you're in the right place, please subscribe to Raising Disabled to have some fun with us as we discuss the extreme highs and lows that we and our guests have experienced firsthand living this different life that we love.

Deonna: Please share this episode with friends and family and follow us on, at Raising Disabled Podcasts on social media to be an important part of this community.

Rhandyl: Hey everybody, this [00:01:00] is Raising Disabled and uh, we'd like to welcome you to our first episode, and we're just gonna introduce ourselves and talk a little bit about why we wanted to. Share this podcast with you, guys. My name is Rhandyl. I am from a small town in the Texas Panhandle, Shamrock, Texas. I live in Lubbock now.

I moved here in 2006 to go to college and I married. I. Uh, Shamrock small town boy in 2010. We had our first child in 2016, and then we had our second child in 2021. My husband is a nurse practitioner, and I am a physical therapist assistant, and I work in pediatrics in the home health world, and Deonna and I met through similar circumstances and I'll kind of let her.

Deonna: Fill you in on that. Okay, [00:02:00] so my name's Diana and I'm from Artesia, New Mexico. It's a real small town in New Mexico and I came to Lubbock also for college. I went to Lubbock Christian and that's where I met my husband, Dane, and he's a pilot now. But, um, we have two kids. My son Cole is 11 now, and my daughter Allie is.

Seven. I'm like, she just turned seven. And so yeah, we live here in Lubbock where Rhandyl lives also. And so how we met is we were both in the same hospital at different times and our kids have similar needs, which we'll talk about in the next two episodes, but. Someone who was a mutual friend told me about her and to look her up on Facebook because we lived, both lived in Lubbock, and so that was where we met, and we started talking.

It was really great because, you know, when you're at these hospitals, they're asking you a million questions every day that you don't know the answer to, [00:03:00] like which nursing agency you're gonna use or which DME company you're gonna use. And I didn't even know. What a D M E company was. And so it was just, it was nice instantly having this person who was walking the same life as me and you know, could tell you what to do.

Because when your kid first becomes disabled, whether they get hurt or they're born that way, you're just clueless. Like you have no idea what to do. And so that's kind of how we met. 

Rhandyl: Yeah, I meet a lot of families in similar situations online. Typically, most of the time it's via social media groups, specific needs groups, and almost monthly I get.

Like a connection to someone in a similar situation and try to help support them through what they're going through at the time, because it's something that typically, it's something that I've already been through and try to help [00:04:00] advocate, but then I also myself really seek help in this disabled world there.

And so this, uh, podcast is something that has been brewing in my mind for quite some time because I wanted, another way to be able to communicate and reach out and share our life. And so we're, we're gonna talk about two different groups, not talk about, but we're gonna, we really want to address topics and talk to people in a two, two different groups is kind of how we're, what we're going for this podcast.

And, and the first group is Raising Disabled. It's for parents. Who are walking the same road as us. And then also, you know, not just parents, but family members that may have taken over the care of a disabled child or foster families, God bless them, foster families that take in these [00:05:00]disabled children, grandparents, you know, that are raising their grandchildren.

So yeah, that's the kind of the first group that we really wanna address. 

Deonna: Yeah, we realize that when you're raising a disabled child, whether it's the parents or whoever the caretaker is, it just ripples out into that entire family, into all their friends. And so this is for anybody who is connected to a disabled person and wants to feel like they're not alone.

So yeah, Rhandyl asked me a few weeks ago if we would start a. Podcast about being a disabled parent, and I was like, sure. And I thought we were just gonna plug in the microphone and start talking. It's a little more complicated than that, but we finally got all of our ducks in a row and are ready to go.

So yeah. So in this first group we're just talking about, we're talking to the parents who are walking this road with us, or the caretakers walking this road with us. When you [00:06:00] find out your kid is gonna be disabled, and a lot of times it's for life. There's um, there's some tough conversations we've all had with doctors that were very traumatizing and not fun.

But when that day happens, you instantly start seeking people who are like you and it feels like. There's no one out there at first. And so that's, that's part of why we're doing this. But we both have friends in town who have a kid with a disability and you just instantly bond with those parents because you understand your life is different than everybody else that you know.

And so we're, we're trying to be that for you guys. Just somebody that understands and is listening, and it can be. Extremely isolating and lonely. Like I don't know about Rhandyl, but when I'm at home, I feel like this is all normal. And they're that it's normal to have people in your house 24 7, and it's normal to just do [00:07:00] all these things.

And then the second I walk out that door, I'm surrounded by people who don't get it and who you know, their kids are all running around and playing and having fun, and my kid can't do that. And so it's. It's like you feel normal when you're at the house, but the second you step out you realize that it's just different.

And so we're here to just make people not feel so isolated and that we understand. 

Rhandyl: Right. And I think it takes a while, and I know you'd probably agree with me, Deonna, it takes a while for that to become your new normal. But yes, the hardest times for me still to this day, and especially in the beginning, was being out in public as a disabled parent.

So we definitely wanna hit on the trauma and the isolating aspect. So that comes with a lot of anxiety, a lot of depression, and we, you know, we've been. Doing this since, I mean, 2016, Deonna 2020. We [00:08:00] wanna talk to people that have been doing this for decades. We wanna learn, we wanna learn from our listeners and we wanna, you know, kind of share how we work through our anxiety and depression.

Things that have helped us along the way. But I mean, we would. I'm always willing to get some advice from people that are, you know, they're very seasoned in this life, so, 

Deonna: yeah. Yeah. I'm just gonna tell you right now that if you're listening to this, and you're a disabled parent, you already know this, but if.

If you have a disabled kid, you've been through some things so bad, you're, you're so messed up, you're so traumatized. We all have P T S D. I have witnessed things that I never in a million years sad, odd, witnessed with my own kid. I mean, my husband has witnessed these horrible things. My 11-year-old son has witnessed these horrible, horrible things.

And so, you know, we were talking about how. [00:09:00] Before we started recording that, you know, when people are always telling us how strong and brave and tough and inspirational, we are, and I, I don't know about that. I, I don't feel any of those things about myself for sure. I feel them about Rhandyl and others, but like myself, no, but.

You know, we all have anxiety. We've all probably had moments where we were so depressed. I remember moments where I could barely get out of bed. I was so sad about what was happening with my daughter. And so we wanna talk about that because I feel like there's a stigma and you're just supposed to be tough and move on and just, you know, be okay.

But a lot of disabled parents aren't okay. And so we wanna. Make sure that you guys know. You're definitely not alone in that either. Yeah.

I 

Rhandyl: always say, you know, whenever people express their, just their support in saying, oh my gosh, I dunno how you do it. You're so [00:10:00] strong. Like, I don't know how you do it. I, you know, that is, it is a compliment, but it's, I also always respond that, you know, any genuine human being that has a soul, they would do the same thing if it was their child.

So yes, from the outside we may seem strong, but we are very fragile because of the things that we have to live with in our daily life. And the unknown. There's so a lot of unknown, which everyone. And our world kind of knows that. So yeah, just some examples of things that we wanna talk about. Okay. There's a second group of people that we obviously want to interact with, um, people that wanna learn more about our world and help be advocates for this disabled community.

So, Deonna and I, we are raising disabled, but just like a lot of you listeners, we're also parenting and raising typical [00:11:00] children, so we. We wanna talk about how there's also challenges, but then there's also blessings of having, you know, a typical child and a disabled child. It's a whole, you parent them differently.

Like it's, it's a whole, it's a whole topic that's like for an episode in itself. But, um, just to kind of. Say that we really want to reach out to people that aren't raising disabled, but that wanna learn more or just have some, wanna have some more insight on kind of how our lives are and how, how we kind of make it work, um, with our family dynamic.

Deonna: I think like what Rhandyl was saying, we both were clueless before we had disabled kids. I had no idea what the stripes were next to a handicapped spot where people park all the time. I mean, there were things that I just didn't understand what [00:12:00] those things were for. I. And now I understand. You know, if you park in those spots, you could literally trap somebody in their car, and they can't get out.

And so we kind of, there's little moments like that that we were, you know, clueless about before. I had no idea. And so we just want this to be a place where we can teach how to help disabled families when things are good and bad. I know people love to help us. When our kids in the I C U, they send us DoorDash, they bring us food, they offer all these things.

And I'm not saying that being in the I C U is easy, it's not. But then when we go home, everyone just assumes we're great and you know, we don't need any support. We don't need any help. But disabled parents, first of all, are just exhausted. I know Rhandyl like. You sleep on a futon in your daughter's bedroom constantly.

I am sleeping on the ground on a [00:13:00] mattress outside of my daughter's room in the entryway. We're tired 24 7. I mean, in a way that I could never, ever had imagined how mentally and physically tired I am all the time, but, but yeah, we're trying to teach people that there are ways to help a disabled parent.

Even when things are quote unquote good, because our good days are harder than most of our friend’s worst days of their life. And that's just the truth and it's, it's hard to hear for people, but we want to teach you guys how to advocate and make the world a friendlier place for a disabled person.

Because I don't know if Rhandyl agrees with this, but like, the world's not friendly to disabled people. My daughters in a wheelchair like cannot get out of the wheelchair ever to walk. And so the world does not make it easy when you're in a wheelchair or even when you're not in a wheelchair. It's just so hard.

Yeah, I mean, we're definitely. [00:14:00]

Rhandyl: The minority, I mean mm-hmm. It's not a, a purposeful unkindness, I believe it's just no. An unawareness. And so that's, that's a huge part of, of why we want to get a large group of listeners because just awareness is the biggest. Most important aspect of, uh, this raising disabled?

I mean, it's, it is, yeah. I mean, I was completely clueless before I, I didn't start out working with medically complex pediatric children in my career. I worked with, you know, adults and orthopedic issues, so, that was, you know, before, before my first child. She's my disabled kid. I, yeah, completely clueless live, grew up in a small town, was just not around a disabled community, and so I have learned a lot.

I've had to learn a lot on my own, and so hopefully our listeners get a little more insight and not be [00:15:00] as clueless as we were prior to our situation.

Deonna: Yeah, I think that part of this is just. We wanna open y'all's eyes to ways to help. And you know, I'll give you an example really fast. The other day I was at my son's baseball game, and I am pushing Allie through sand, which if you have a kid in a wheelchair, that is so hard to do.

And I definitely would never recommend you pushing a person in a wheelchair without their consent because that's weird. But you know, I had probably 50 or 60 people watching me. Struggle to push her through the sand and it was a lot of people who could have helped me, but they just looked at me and smiled and I'm sure they felt sorry for me, or you know, I'm sure they had a thought.

But in moments like that, someone could have came and helped me and it would have been huge to me. But no one did. And it's, it's little moments like that that you remember as a [00:16:00] disabled parent. Like this moment where a simple act of kindness or help would've really made a huge difference in our life.

But people just are so intimidated, you know, by it and everything. And so, you know, we're just trying to kind of open up eyes to ways to help. 

Rhandyl: And, and just to kind of follow up on that, I'll give an example of pre raising disabled. I, I kind of grew up, I don't know if it was like, you know, my parents teaching me this or just me and my personality type, but when I would, um, See an event like that or see a disabled child in the grocery store or in public, my first response was to just like, look away.

Don't make eye contact. Don't stare. Don't stare. Like I knew better than to not stare, but I, I didn't, I didn't. My first response was never do they need help. It was always [00:17:00] like, okay, like look away. You know? Mm-hmm. And so that I know that isn't, I mean, and we know that's a normal reaction, but that's also we wanna talk about.

And you know, I now like when. The rare person actually sees us out in public and starts interacting. I actually enjoy that. I like answering questions, kind of my favorites whenever little kids, cuz they're so innocent and they'll, you know, come up and start asking questions like, what's this, what's this?

And just being able to answer those questions kind of in a kindergarten way. Like, you know, it's, it, it's honestly like, It's, it makes us feel good. It's not like, you know, and then some moms are like, oh my gosh, I'm so sorry. And I'm like, no. Like I want, I, I love this. You know, you should listen to mom. I'm like, no, for real.

Yeah. So those are just examples of, you know, kind of [00:18:00] how we want everyone to feel like not as intimidated by. The disabled community in the public. So, 

Deonna: and that's kind of, we're gonna talk about, we're gonna talk about how you interact with disabled families and like things that, it's like what you were just saying, like things not to do, things that we like and that's gonna be very situational on each parent, but mm-hmm.

Yeah, we want people to know like, for the most part, this is how you should handle this situation or talk to this person, or whatever. 

Rhandyl: Yeah, and so kind of in a sense, and you'll hear at the end of the episode, we just want to help everybody belong. And so it's a song that comes on that'll come on at the end, and we just felt like it was it.

We just had to, had to end with that song because that's like sums it up, like that's why we're here. That's why we were led to this podcast because [00:19:00] we want everyone to belong.

Deonna: Yeah, so that's basically a huge summary of what we're going to be talking about with you guys. We have so many great ideas for episodes, and if you have any questions that could inspire like a show idea, we're gonna be on Instagram at Raising Disabled podcast.

And so we would love for you guys to come over there and follow us and. You know, you can send us messages or comment with things that you've wondered about disabled families or our kids specifically. And when you ask us those questions, it's going to help us decide what we need to talk about because, um, you know, we, we'll need your help a little bit in that.

And we want you guys to subscribe to our podcast, obviously. And, um, if you leave reviews, that helps more people find us who need [00:20:00] this group of people that we're gonna gather up. And so we please subscribe, leave a review that helps us know what we're doing right or wrong, or whatever. And I always tell people this, share this with everyone you've ever met.

And so anybody can listen to this and take something from it. And if you know a parent who is raising a disabled child, please, please tell them about this because I. I even if you don't think they need somebody, they do because we both feel that way. Every time I meet a new mom who is living this same life as me, I just get so happy.

Like I tell my husband, I'm like, I'm at this new person. She, her kid has a trach too, or her kid is on event too, or whatever. There are so many little, tiny things that bond us together, and so yeah, we just want you guys to interact with us because that will help us make this better. Okay. And I wanna do a special [00:21:00] thanks to Francine.

She’s, my cousin. I'm her assistant. She is the attorney at Love Law Firm, and she basically helped us get all this set up. There's so much behind the scenes that we didn't realize we were gonna need, and she's doing all of that for us. And so just thank you to her for doing that. 

Rhandyl: Yes. Thank you so much Francine.

And also thanks to my cousin as well, Andrew Barefoot. He created the music that we are using for this, for this podcast, the intro and outro. He is an amazing musician, and we cannot thank him enough for helping us out with this.

Deonna: Yeah, I was so excited we were gonna have real music on our podcast, so I'm excited.

Rhandyl: Yes and the next two episodes, you guys are gonna hear from both of us and how we started and when we started raising dis stapled and the journey that we have had [00:22:00] so far. And we'll share a little more about our daughter's diagnoses. So if you can please download those next two episodes now. That would be awesome.

Thank you so much for downloading today's episode and remember to follow us wherever you listen to podcasts and stay connected at Raising Disabled Podcast on Instagram and Facebook. Please leave your questions and comments there so that we can learn from you, our listeners. 

Deonna: Before we go, I wanna remind our listeners that this podcast is for the purpose of education and entertainment only and is not a replacement for seeing a doctor.

We suggest you seek out the help of a trained professional for help with your child's specific situation. And remember, EVERYBODY BELONGS.