Katrina Raising Dallas - The Recess Project

In this episode we:

• talk to Katrina about raising her daughter Dallas,
• acceptance of your child's disability,
• and her non-profit The Recess Project.

Follow them on Instagram @therecessprojectofficial and @discover_with_dallas

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Transcript

Rhandyl: Hey y'all, so I guess last time we chatted I was in Houston with Remi and we've had just a really busy few weeks, but Deonna, what about you guys? How have y'all been in the last couple weeks?

Deonna: I feel like not great, but full of honesty, but I was just complaining to you before this started, but yeah, we were in Houston also. And we went there when you guys were coming back, right? Yeah, we just missed each other. Yeah, we probably passed each other or something. Probably.

But, yeah. , we went back to Houston to do just some follow up stuff for the procedure that Allie had, and so it went good. We've been to Houston so much lately that it doesn't have You guys have. Yeah, it's just, it's a lot but we went and this time we basically just did back to back appointments.

It was a lot, but it was good. And we stayed at this place that we've been staying at lately and that has this really great pool. And so at night we would go swim and actually met this other mom when we were out at the pool. And it's just it's so funny because her kid looked completely healthy, and I started talking to her, and then she Starts telling me about how, and she had no idea that I had a kid that had a disability cause my other kid was out down there and we just start talking and then turn, turns out her kid that was in the pool had, this pretty dangerous form of leukemia and had been going to all these doctors.

Oh, he was there for a fun reason at that time. But I'm just like, Oh my goodness. Like it was just, it's crazy when these When us moms get together and start talking about what we've been through, we're so screwed up and so traumatized by all these things. But so that was interesting.

, we would see them down at the pool every night and get to talk to them. So that was cool. But 

Rhandyl: I have a similar, when we were in the lobby down there and the hotel , in the medical district We had all these carts full of all of our stuff, unloading the car and trailer and everything and I noticed this lady walk in and she took a double take at the backup ventilator that we have and I was like she seemed like she recognized it and then she went up to the front desk and then she came back and she was like, do you mind me asking if is that a home ventilator and what kind it is?

And she was asking all these questions and I guess her grandkid was in the hospital at Texas Children's and he was going to go home on a vent and they were trying to figure out which home vent they were going to use and stuff, yeah. Yeah. 

Deonna: You're like, don't use this one. It's about to go. Bye bye.

Get the new one that they're actually making parts for still. Yeah. I know it is funny because we feel this connection with other parents in a way that is just like instant and it doesn't matter if your kid's disabled or has had cancer or just a lot of things like that. We all have gone through some tough things.

And so it is cool to look up and pay attention to what's going on around you and make those connections because they become a little more important than you realize, oh, 

Rhandyl: yeah, for sure.

Deonna: But. Yeah, it was stressful going to all those doctors, but we got it done and we don't have to go back again until September.

So that's good to get a little bit of a break. We're trying to get to where we only go once a year, but it's hard to get everybody on the same, schedule and do exactly or what are they called? Sleep studies. We have Yes. 

Rhandyl: Yeah. 

Deonna: I hate doing those. It's my turn to be up there with her next time.

And Allie was laughing about it. She's like, it's your turn mom. And I'm like, Oh, are you sure? I don't remember it that way. I think it's your dad's turn. You were sleeping. How do 

No, Dane's like, it's definitely your turn. I'm not doing that. Did y'all have fun in Galveston and everything?

Rhandyl: We did. I joked about hopefully we only have the one appointment unless they throw us a curveball. And they they tried to get us to stay for the following week and go to another appointment on Monday. Oh, gosh. But we ended up being able to do it from home via telemedicine. So that worked out.

Oh, good. But yeah, no, everything went great. The appointment was good. . They wanted us to coordinate with their ENT airway team. It's something fairly new that they have there and That's who we met with just to get established on Monday. The ENT was really nice and he coordinated with our ENT here.

So That was good. But Galveston was a lot of fun We had an Airbnb right by the beach and We were like 30 miles down the shoreline from Galveston city itself. And so the beaches were really big and they weren't crowded. It was mostly all locals that were there. And you could just drive your, yeah, it was so nice.

You could just drive your vehicle right onto the beach, back it up and like just leave it there. We just took, 

Deonna: yeah, 

Rhandyl: it's, it was nice. We just, we popped a big canopy up and Both the kids absolutely loved it. We spent most every day all day at the beach. And Remi loved it. She was just, I didn't know how she would do with the sand and she did great. And of course, Barrett was just all about it. We had a really great time. So it makes me happy. Yeah. And a lot of people think Galveston, which it's not the prettiest ocean and the cleanest, but it was actually it was warm and there wasn't a whole lot of seaweed and stuff like that, but it was a lot of fun.

But the road trip home was rough. It was rough. With a two year old and 

Deonna: That trip's tough when things go well, but Yeah. 

Rhandyl: Just At going from Galveston back home that I did on about two hours and so oh for sure that was rough And we had a lot of stops. We had a lots of dirty diapers and blowouts and wardrobe changes and We were pulling a trailer so we had to stopping at gas a lot more often and it was just Yeah, it took forever.

It was over 12 hours before we got home. And lots of Disney movies and all the things, yeah. But we made it home safely and it was fun. And then that next day we had that telemedicine visit. And then that same week Remi had her bronchoscope here at the local hospital. And so that was another reason they wanted the ENT team from Texas Children's to coordinate with our ENT here.

And they had collaborated before, so they knew each other. And 

Deonna: Oh yeah, that makes sense. 

Rhandyl: Yeah. And so they instructed him on the video footage they wanted to get of her airway. Just because of some symptoms that she'd shown, like if, when she's decannulated on accident or like when she cries too hard and stuff, we were, They were curious what her airway looks like, where the trach is, and above where the trach is.

And so, , they went in, we just, it was like a routine day surgery like every year. Every kid with a trach has a bronchoscope at least once a year usually. , but this time they they went in with the camera through her mouth above her vocal cords, and then in the video once they pass the vocal cords, they see you can see the upper airway, and it's super floppy, and then you can see them pull the trach out, and then they go down, and even where the trach is. Itself sits is still pretty floppy, but then where she had her surgery in 2019 where they did all that work down Like at her bronx and like at the bottom of her trachea is still it's wide. It's like open looks great yeah, so basically we found out like if She was ever to not have to have a trach then she's gonna have to have more airway surgeries in the future. 

Deonna: Yeah, that's I mean you find out something like that. 

Rhandyl: I mean it was we were expecting it Honestly, like it wasn't something just because of the symptoms she shows when we tried to do capping trials and things like that we just We had a feeling, but just seeing it, like visually seeing it we were like okay.

That's just, let's add one more thing to the list, but Add that to 

Deonna: our list of things to do. Yeah. 

Rhandyl: Yeah. When we 

Deonna: were, when we were in Houston, we got a similar fun little, it was like, we went there and you don't think you're getting any new news or anything. And then they were like, Oh, her spine is curving pretty bad already. And they're telling us all about this and I'm like, dang it. And they're telling you about like at what number it, she'll have to have surgery. And I just hadn't thought about that yet. Like I knew she was leaning off to one side a little bit, but we actually had to get a whole new wheelchair seat fitted.

That's custom formed. Have you seen that? Where they bring the, yeah, so we did that Thursday. And so I'm hoping that'll slow down, but you're just like, man, that's There's some problems even on my radar and now here we go, but, there's, we do what we gotta do, but, my birthday was Friday, and I'm not a big birthday person, but It, my son's gone at a camp in Arkansas and so, yeah me and Allie went and we actually ran into our friend Kami in Walmart and I don't know why, but that was exciting.

We're just like, Oh my gosh Hey, I know. Kami was in an episode, two episodes ago, but we ran into her and yeah. It is so funny because her kids saw Allie and a lot of times kids are real intimidated by Allie and her kids just like the older one just starts talking to Allie whatever her kid, her sister has a trach, so she doesn't care.

No big deal. So that was cute, but that's awesome. And then we ran into another girl that we know and her son at the movies. And so we got to sit by them and it's just, when you see a parent of a disabled kid out in the wild, you're just like, Oh my gosh you have to hang out.

Yeah. 

Rhandyl: So what movie did you all see 

Deonna: inside out too? So that was fun. It was good. It was not upsetting to watch, but like it. It was showing how anxiety can affect you and it was so interesting seeing like what anxiety does and at one point the girl has a panic attack or an anxiety attack.

And it was interesting watching it because me and Allie both, and when we got back in the car, Allie's like, that's what it feels like. And I said, I know. And they did a good job showing kids what that would feel like or be like, which most kids have probably not had a massive anxiety attack, but.

Yeah, I thought it was pretty accurate. So that was kind of interesting. I know 

Rhandyl: I'm behind. I haven't watched those movies. I think we touched on that with Deanna. 

Deonna: Yeah, I know. Yeah. We'll have to ask Deanna what she thought of the second one. But no, it was, I don't know. My, I'm not, we're not big birthday people.

So I'm kind of like, ah, whatever, 

Rhandyl: did anybody make you a special cake for your birthday? Since you're always making cake for everybody? 

Deonna: No Dane bought me ruffle cup, which are these really good cupcakes. And so I was good with it. If Dane tried to make me a cake, I don't know how that would end up like he could make me like a brisket or something, but cake and no, but, and then it was father's day.

Did you guys do father's day stuff? 

Rhandyl: So we actually hosted. Party at our house and we had planned it like a month or two in advance and didn't realize that we'd scheduled it on Father's Day weekend. 

Deonna: Oh, that's funny. 

Rhandyl: Yeah. So , my husband, he hosted a meal for some of the fourth year residents that are about to leave. The hospital and go to their fellowships and stuff. Yeah. And so we hosted them and their families over for dinner on Father's Day. And I actually took my son Saturday to my parents because he's having grandparent camp this week. Oh, those are great. We, yeah, we don't have childcare , he's in Shamrock just living his best life. riding the tractors and all the things. But anyway, so he wasn't here on Father's Day, but we basically spent the whole day prepping for a dinner party at our house. Oh man. But what about y'all? Do y'all do anything special? 

Deonna: Not really. , my son's gone. So we just went to church, which we hadn't been back to church since Allie's procedure, which was like six, seven weeks ago.

And so everybody was like, Oh my gosh, where have you been? Cause I didn't really. Tell everybody. But sure. Yeah, so that was nice to be back and everything. And then we just, we, I don't know, we should have cooked something cool, but we didn't, we just were being lazy, but no, that's good.

I bought Dane one of those ice chest, I think it's called like icy breeze or something, but it's this ice chest that you just, Put ice in it, like regular. And then on the top, it's an air conditioner. Oh, I've seen those. He liked it. He was like sitting out. Yeah. If you're sitting pretty close to it you can't be sitting like eight feet away.

It's not calling a huge area like that, but I think for like golfers or people who's, like Dane, Dane was sitting outside, like chilling on the back porch and it was blowing on him and he was like, I love this. thing. Like he was nice. And of course I bought him barbecue stuff. He likes to grill out and stuff but yeah, we did that.

So it's just been, I don't know, I've I was complaining to Rhandyl before this started, but I have MS, which I feel like I talked about last episode, barely, but. , when I get tired or stressed, which is my life, pretty much um, but I can usually manage it okay, but when we went to Houston that first time, I just got really worn out from everything and I just never could recover.

And when you have MS any little thing like that, any little, extended period of exhaustion or. Sickness or whatever the case may be can really take you down pretty hard and so I haven't recovered from that yet. Sometimes I'll have like little baby ones and they'll last a week and I am okay.

I don't even really call them a relapse, but this one's been going on since the middle of May and it's just, it's pretty bad. 

Rhandyl: Yeah, that's so long. 

Deonna: Yeah, and , there's a couple things you can do to try to make it better, like take steroids, but I just hate taking steroids. They make it so hard for me to sleep and just, I don't know.

They make you feel better, but they have their own side effects. Side effects. Not a huge fan, but it's been, we've had a lot of nursing turnover this week and stuff like that. And so it's just been really stressful. Yeah. Like when you lose a nurse or have a big lapse in coverage, it's just super hard, which makes everything worse.

. It's been kind of rough. Cherry on top. It's yeah, all of it. It's funny because I try to be positive on here as much as I can, but reality is sometimes. No, we're going to be honest. It's just, sometimes it's really hard and really hard. I was trying to text.

Rhandyl: Sometimes it sucks really bad. 

Deonna: It does. It can be really, and I have a good support system, but it doesn't make the best of it. Bad go away. It's still really hard, but I was trying to text you guys today, you and our other friends that are in this that are in this group, cause I feel like if you cry, it just makes you feel a lot better, but I can't cry really.

Like I just don't ever, and I was trying to find that video. Have you seen that movie, the holiday where Cameron Diaz is like trying to cry, but she can't. Yes. That's me. 

Rhandyl: That's a great scene. 

Deonna: I went in my room today and I was like, oh, and then I was like, no, I can't do it. Just move on. Like whatever. Can't do it.

But I did try. I tried really hard, but it was funny. That's funny. Yeah. I know. I'm always like, I wish I could cry, but I can't, but, and then, I don't know, I was telling you about this, but we live in Texas. 

Rhandyl: Maybe you need a punching bag. Yeah. Okay.

Deonna: I need something, I don't know, but we also live I grew up in New Mexico and one of our, which you've been there before too, it's this town called Ruidoso.

It's close to here. One, I grew up going there all the time and I just have so many memories connected to that town from I lived there for a summer and things like that. It's currently. Yeah, it is in New Mexico, and it is currently burning to the ground 

Yeah, they inoculated everybody this week.

Yeah, and when stuff like that happens, I feel like when you have any sort of sadness or grief or trauma, when any thing happens like that, it just, I don't know, it just magnifies it, I think, but, Yeah. And I just, oh, my heart goes out to all the people my aunts have cabins up there, I'm like, oh, shoot it just, 

Rhandyl: so much, 

I know a lot of people that, devastation, live around there, and, oh, yeah, oh, it is, yeah, it's so bad I don't know, it's not far, it's like the closest mountain town to where we are in the place, oh, yeah, everyone goes there,Yeah.

Deonna: Oh, that's the first place I ever skied and just like all the things. So yeah, I don't know. There's just those weeks where you're like, is this cursed? Is the whole week cursed? And that has definitely been my last couple of weeks, so nothing fun for me to report this week, it is what it is. My dad was, my dad's just don't get ahead of yourself. Take it one day at a time with everything. And that really is what you have to do. You can't get too far in advance, but yeah, that's just one of those weeks. 

So we had a really great episode that we have for you guys. We talked to Katrina from the Recess Project and we learned all about her daughter Dallas and then about her nonprofit recess project. And so we will see you guys there.

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Rhandyl: Hey everyone! Today we have on Katrina Plazak, we follow her and her daughter on social media, you can follow them at Discover with Dallas. Katrina is also the founder of an awesome non profit organization that is near and dear to our hearts,, The Recess Project, which we'll get into in a bit.

First of all, Katrina, thank you so much for taking the time out of your busy schedule to come and chat with us. 

Katrina: Thank you so much. I'm excited to talk to you guys. 

Deonna: Okay, so first just tell us a little bit about your family. 

Katrina: Yeah, so, there's six of us in our family.

We live in Illinois, about an hour from Chicago. I have four daughters, Izzy, Savannah, Dallas, who we're going to talk about today, and her little sister, Brooklyn. Okay.

Rhandyl: Wow, girl mom. 

Katrina: I don't know if it's easier or harder to have all girls or all boys. I don't know. 

Deonna: Yeah. Oh my goodness. 

Katrina: We're struggling right now because I have two teenage daughters and it is, it cannot be fun.

Deonna: And how old is your disabled daughter, Dallas? How old is she? 

Katrina: Dallas is ten, so she's in fourth grade. . 

Deonna: My son's starting to act like a teenager and I'm like, oh, here we go.

Rhandyl: Yeah, I was such a diva. I can only imagine.

Deonna: Probably going to get paid back for how I was, like, stress ball all the time. So Allie will probably be that way too. Great.

Rhandyl: All right. So Katrina, tell us about the time leading up to finding out that Dallas had medical issues. Was it in utero? Just tell us some details about how you found out about her diagnosis.

Katrina: Yeah, so, my daughter Dallas has cerebral palsy, and so for cerebral palsy, that's something that usually you're born with by a traumatic birth, or you can have it can be in utero She had gotten cerebral palsy because she was born at 28 weeks, so she was considered a micro preemie. And one of the things that happens when you're born too early is the lack of oxygen to the brain, which can cause a brain bleed.

So she had significant brain damage due to the lack of oxygen due to prematurity. So , she had a very rough NICU stay, 106 days in the NICU, several surgeries.

One of the things that they talk about when you have a premature baby is, they say the term cerebral palsy, like there's a high risk of cerebral palsy. So And when you're on the NICU, you're just focused so much on just surviving the NICU experience, not really thinking too much about the future.

And um, I honestly never even Googled what is cerebral palsy. I had no clue what it was. Just was like, yeah, okay. She's at risk. Leave me alone. Let me just get through this NICU experience, right? It wasn't until, After the NICU as she's progressing as a baby, or I should say not progressing as a baby Right away when you have a baby that premature the physical therapist OT speech all of those speciAlliests come into your house And work with the baby You so, as she's not hitting those milestones, then the term cerebral palsy kept coming up.

Depending on the doctor, they diagnose at different times. So, she was diagnosed around, I want to say age three. She was diagnosed spastic cerebral palsy. And then that's when I was like, What is this? And then, you do your mom thing and you go on Google and then you get You know, scared half to death , what are these? My kid's going to be using a wheelchair, a walker, she's not going to be able to talk. And you start panicking. 

Rhandyl: Because cerebral palsy is such a broad diagnosis. Not one person with cerebral same or presents the same. So Googling it, I'm sure was scary.

Katrina: Yeah. Definitely terrified and once I did the Google search and, For me, I'm like, Oh my God, this is the worst case scenario. She's not going to be able to do anything. And , I just remember those were really dark days for me because everything's so new, like just the disability world, because, as my two daughters that were born before her were just. Typical children that hit those milestones everything was just so easy And then I never had anyone in my family that had cerebral palsy. I did have a cousin that had spina bifida So dallas also has hydrocephalus and I knew what that was and I knew what a shunt was because a lot of People with spina bifida also have hydrocephalus. So I was familiar with that but I wasn't familiar with cerebral palsy. 

Rhandyl: Okay. So you said she was three whenever you got the official diagnosis. So kind of walk us through what those first few moments or days were like after receiving, I mean, obviously first panic yeah. 

Katrina: I remember the very first time that she was doing physical therapy because I remember her doctor at the time, which was a physiatrist, which I highly recommend anyone.

That has a child with a disability. Make sure you have a physiatrist. So, she said basically the chances of her walking are very slim if a child cannot sit up on their own by the age of two. And she was at the age of two. And she could not sit up on her own. And so I had that reAlliezation that, Oh, this is going to be extremely hard. One of the things that every parent expects their children to be able to walk. And it's. It's a huge deal if you cannot walk because it makes your life incredibly hard. So it's kind of that reAlliezation that my daughter's life is going to be incredibly hard. Which is every parent's nightmare is they don't want their hard struggle. Yeah, they don't want their kid to struggle. And then you go into this deep hole of how is she gonna be accepted in school, 

so I think something that a lot of parents in that stage with their children with disabilities do is they're told like, hey, your child may never walk, you go into full fledged full gear. You're like, what can I do to make her walk? What surgeries can I get? What therapies can I get? You're on line all night looking for the latest technologies and the best doctors. Yeah. I did. And so for a long time, in the beginning with her journey of trying to walk and hit those milestones, it was a lot. It was. It was a lot. And I'll never forget the first time that she had her physical therapist at the time and she gave me a pamphlet and she was like, I think we should look at equipment for Dallas. And I was still in this phase I know the doctor said she can't walk, but it didn't hit me that she was going to need. Like a walker and I was like, yeah, she handed it to me and it was like in that moment It was like just such a punch to the stomach. I was like, what are you talking about? Yeah, she's gonna walk so it's like you ignore what the doctor's saying because you're just like No, just so hopeful, you know that everything is still gonna be okay. It's denial, right? Almost. Yes. Oh, yeah. 

Deonna: It's like the five stages of grief, and you have to work your way through all of them. I mean, I lived in denial for a little while, too. I mean, it just Yeah, me too. You don't want to believe it. And we all have that moment, like you're saying, when you're like, oh, this is real. I can't fix this now. That's tough. 

Katrina: Yeah. And it was that moment that I was like, oh, this is real it's not just the doctor, it's her physical therapist, and I remember just bawling my eyes out in front of her, and it was like the first time I cried, and I was like, looking at the little girl in the pamphlet, and that was the moment of I can't even say accepting, it cause I still didn't accept it, cause I was still like, I don't know, which surgeries do we gotta do? How many times does she need physical therapy? Oh, two times a week. Let's bump it up five times a week. It was just like, those were the rough days.

Deonna: Oh yeah. I remember very vividly them coming in and doing that same stuff to me. And my situation is a little different than yours, but. It's terrible when they come in like that and are giving you all those, like, how she was going to need a special bed and a special this and a special that. And I'm like, what? I mean, it was just so shocking. I remember.

Katrina: Yeah. I can't imagine. There's such a different experience as being born disabled and then acquiring a disability because you had those experiences of her being typical, and to have that taken away, it's almost like you have to switch identities. Oh yeah, for sure. And with having a child born disabled, it's you still have this picture of how you imagined them to be. And, yeah.

Rhandyl: It's still a grief process. 

Deonna: Yeah, it's a loss. Yeah. Yeah, yours is a mix of both because it's like the diagnosis happens so much later Than I reAlliezed I mean I thought that if which and I'm sure this is how it is with a lot of cerebral palsy Cases you find out very quickly.

Okay, this kid has it. Whatever. Let's go on like with But yours got drug out. It sounds like maybe that's a common thing. I don't know. It 

Rhandyl: is. I think historically they they don't diagnose CP until a few years after birth. Just because they can't know. Yeah. But now just from recent experiences I think they are diagnosing a little earlier than they used to.

Katrina: When you have brain damage they can't diagnose it until they can see that. The brain damage affected you physically because people that get brain damage, sometimes you'll never know because their brain is so plastic. Is there that they just rewire the parts that were damaged. So they're able to function normally. So with cerebral palsy, like her brain just could not rewire. And so, you can have people with CP that you can barely know. They might just walk with a little bit of a limb, or maybe their arm is just a little bit stiffer, and then you'll have some that are, severe Dallas is a quadriplegic. She requires a power wheelchair, but there's been kiddos that have had worse brain damage than her that you wouldn't even know. So it's just because the brain is so, it's such a, complex organ, you just don't know how it's going to react. So that's why they can't diagnose it.

So, every parent, they're still expecting, to have this typical child and it's like this waiting game that is just so stressful, cause you're just like waiting to see you can't wait till they grow up to see , how. They're physically gonna end up because you just want those answers as a parent what is their life going to be like? I don't want to wait till she's three to get a diagnosis. Yeah. 

Deonna: Well, and cognitively, is she the same as her peers or what's going on with that side of it? 

Katrina: Yeah Dallas is cognitively, she's in the general education classroom when you have a a disabled child I learned pretty quickly that school kind of sucks for them in that it does not just for the student, but man, the parents hold on tight and speak up loudly because like with Dallas, for example, so cerebral palsy is a physical disability. A lot of people might have also an intellectual disability but the diagnosis itself is physical. But because she was always a wheelchair user since the age of three, there's sort of a stigma that like, Oh, she's disabled. She belongs in the special education classroom.

When we should be looking at her mind, not her physical body, when it comes to the education system. And so she was always pushed to be in the special education classroom. And since she was in preschool, since she was three, I told them like, I want her in the general education classroom. But it was such a struggle to get her out of a special education classroom because I didn't think that she belonged in there.

So I think that there's just so much stigma when it comes to students with disabilities that they need to be isolated in their own classrooms. And I didn't want that for her. And so finally, in second grade. She had a teacher that was a special education teacher and she was in this program where it was like a blended classroom. And she right away was like, contacted me and was like, yeah, so Dallas doesn't belong here. She belongs in the general education culture. I was like, thank the Lord. You finally listening to me. So it was a struggle, . 

Deonna: It's an awkward. Deal. We had to do that. We had to basically take Allie up there and prove to them that she was gonna be okay in the regular classrooms and everything. But she looks so different that I think they were just like, I don't know, I don't think this is a good idea at first. But then they reAlliezed, but you do have to go up there. Having just the physical disability part is very weird when you're trying to get them into school. I, I can relate to that. 

Katrina: Yeah, and it's such a fear especially if they're using, mobility aids or they need physical help, yeah. Oh, it's such an anxiety as a parent to send your disabled child to school and just trusting that their physical needs are being taken care of by someone else that's not yourself, 

Deonna: does she not have a nurse that goes with her? 

Katrina: She has a one on one aid. But just knowing, yeah, there's someone with her at all times, but my daughter can't transfer on her own she can't do things like, a typical kid she needs assistance to go to the bathroom, oh, yeah, It's just those things that everybody wants to do themselves independently. And just knowing that every little thing she needs assistance with, and not having that privacy, and not having that independence. Knowing that there's stairs in the school. And then you're talking about 225 pound piece of machinery If she goes over the stairs imagine that crushing you

Deonna: Yeah, so it's just, oh yeah, 

Katrina: no, like just, it is so scary. Yeah, like any little thing, it could be very detrimental. And as a mom, you just know nobody is going to watch your kid better than you. Nobody's going to care more than you. And 

Rhandyl: I agree with you. That is one of the hardest things about having a disabled child is trusting others to take care of them whenever you're not around. But if we kept them in a bubble and kept them at home and kept them with us 24 seven, not only would we lose our minds, but our children would not get to. live a quality life that they deserve. And so it's one of those things that , we have to just accept that something could go wrong, but scare the crap out of whoever's taking care of them to make sure that they understand the risk that there is, , like you said, if she were to fall over or yeah, it's just a lot to be able to just take your hands off of them and, 

Deonna: oh, stairs are scary. Yeah. , I want my daughter to get to take her power chair to our church. And my husband was like, there's stairwells, like every corner. Cause there's a lot of stairs in this church. And Dane's I'm not ready for that yet. What if she was to accidentally go down the stairs? And I'm like, Oh my gosh, we're not taking the power chair there ever. Oh my gosh. I mean, it's so freaky.

Katrina: I feel like as a parent, having a child that uses a wheelchair, your worst nightmare are stairs. 

Deonna: It's yeah, those stairs are the worst. 

So how did you handle the stress of all this? Because we all know as parents of disabled kids, how almost debilitating the stress of this can be initially. And for me, it hasn't gone away. I don't know about y'all, but I still feel it in every day. 

Katrina: Oh, this is such a good question, and I wish I was a better regulator of stress, and I can't say that I am, because, there's a lot to unpack with this question, because, there's so many stages of Stress, right? Like when it comes to Dallas, I feel like I experienced , the most stress in those early years. Just with all her surgeries, she had a lot of her surgeries in the beginning of her childhood. And then that's just unpacked. So the medical stress just unpacks. So much. 

Rhandyl: Yeah, 

Katrina: The stress right now as she's older, it's more or less just maintaining the stress of not knowing if she's ever going to be able to walk. But once I accepted that, okay, this just, isn't in the cards for her. And for some people, you almost get berated for, Oh, you just don't have faith. You're just a bad parent because you're not pushing her hard enough or you can do anything you put your mind to, you get those statements and you have to be very careful with that because 

I feel like when I accepted that her life is going to be one in a wheelchair. Not only does it take the stress off of me, but it takes the stress off of her. Because as parents, when we're like, okay, we got to do all these physical therapies and we got to do all these surgeries, you can do this, you can walk, and we celebrate. I mean, granted, yes, you should celebrate whenever they hit milestones, but I'm very careful with how we use her walker. , we say as exercise. Exercise. That her goal isn't to walk, but like everyone needs to exercise. We need to move our legs, so that you don't have, hip problems in the future. I'm very careful with how I word it because I don't want her to think that my expectation of her. Is to be a walker because I've accepted that for sure so, I feel like the stress of accepting her disability and that didn't come until after her last surgery. SDR, and then a year after that, realizing, oh, this didn't work, that was okay, she's never going to really walk and how old was she? I want to say she was seven and that was like. 

Rhandyl: So I just want to say right here to anyone that's listening that child's diagnosed with cerebral palsy or any other, diagnosis that's similar to this, here's Katrina saying it took her seven years to finally accept the diagnosis or the prognosis of her child not being able to walk so Anyone listening to this if you are working so hard to I mean This is not to say to give up on your child, never, we would never say that, but to know that it is so common to not accept And like she just said, , it takes so much time.

So don't beat yourself up. But also know just because it's different, it doesn't make it bad. And someone said that before one of our other episodes. Yeah, Amber did. And it's, yeah, Amber. So just know that it's a normal , of us as parents to just keep grinding and trying to find the answers and you're not alone. in this process. 

Deonna: Yeah, I think you brought up some really important stuff because, first of all, I can relate to you because I was going through this horrible stress and my kid is aware of what's going on and people say the dumbest things to me in front of her and they'd be like, well, if you just keep praying, she's going to walk again. 

Or if you just have more faith, she's going to walk again. That is not how this world works. And if that was the case, no one would ever have any illness, any sickness, nothing bad would ever happen. , but , the hard thing is when you're deAllieng with this type of stress and your kid is cognitively aware of what's going on.

, I don't know about you, Katrina, but I had to deal with a lot of this stress in private without her seeing what was going on because, she's still home. And , our hope was dead. , within six, eight weeks, they were like, Hey, this is lifelong. This is not going to resolve itself unless some massive technology advancement happens or whatever.

But she didn't know that she was four. I mean,, we weren't going to destroy all of our hopes and dreams , as four year old, but I mean,, you, can't say those things to a parent. You cannot, because all the. Therapy in the world, all the, things in the world aren't going to change Allie.

It's just, it is what it is at this point. And it's super hard to accept, like it's so hard and it can take years, like you said. 

Katrina: Yeah. And I think, especially if you're in the social media space and it's like they are trying to say it's like a good thing. Right? This is how we are it's okay to be disabled and I want to also give space for my daughter to be like. This sucks. And so I think it's okay to sometimes be like, yeah, cerebral palsy sucks, man. . And to give them that space to be like, Yeah, I actually hate being disabled. I just sit with her in that silence of yeah, you know what? I, I wish, like I want to, change it for her, but I can't. So, , 

Deonna: I know what you mean. There's times Allie does that she'll say I hate my day or I hate the way people treat me or, , people at school treat me like I'm a weirdo and it's, I mean, it just like.

It sucks to hear. So it is difficult because I want people to treat disabled people better than they do. And I think there's nothing like there's nothing Allie or Dallas or Remi can do. So I hope that people treat them well. But I do think it's definitely okay for Dallas to be like, this sucks. I wish I was different or Allie.

I wish I was the way I was before. Obviously it'd be so much easier for them. , , they definitely have been dealt a very difficult hand and it's our job to help them through it. But, oh man, some days. It's all I can do when she tells me those heart wrenching things. I know what you mean.

Rhandyl: And like you said, Exercise is so important and hip health is so important. And I've noticed on your social media that Dallas uses a Zing standing frame, which Allie and Remi also use Zing standing frames. So kind of tell us a little bit about that. How long has Dallas been using her Zing standard and does she love it?

Katrina: Yeah. She cannot stand on her own. So one of the things that Is part of her regular routine is using her Zing stander because, a lot of times with Primary wheelchair users they can get a lot of stiffness in their hips, and we want to avoid any sort of hip surgery, , it's so important , for her bone development as well, because she's still growing that she, , stands on her feet. And, she was also diagnosed with scoliosis. So when she's sitting, her back bends in the way that it shouldn't bend. So being able to have her body straight, as possible.

It also is, hopefully going to help her scoliosis not progress. So that's something that we use every day and she even puts a timer on her watch because we try to have at least an hour a day of her using her stander so she'll put her alarm clock on and when her alarm goes off, she's like, okay, mom. And sometimes she doesn't hear the alarm and she forgets to set it and it's been over an hour and I don't say anything because the more standing she does, the better. Yeah. For reals. Yeah. Yeah. 

So we used to have a really old rickety stander that we, , borrowed and she outgrew that. And so then we ordered the Zing stander and we're like, this is like . I dunno, the Teslas game changer. It was a game changer, right? So much more comfortable , it fit her much better and, , I like that. Have the legs spread out a little bit to help with the hips as well. Yeah 

Deonna: . So what are some, , positive, unexpected, or surprising moments or things that have happened from raising Dallas?

Katrina: Okay, so my most surprising moment, and probably the moment that changed my life, was when I saw her be included on a playground . One of the things that I think most parents do is, as their children are growing up they take their children to playgrounds. It was like this thing that I did with my older two where we would try to find a new playground every weekend and explore different towns and different playgrounds.

And it was just like a big part of our, they're everywhere. And then once we had Dallas and she Couldn't fit in the baby swings anymore. We tried squeezing her in those baby swings like she was way too old to be going in those You know, and we're like come on you can do this her legs are naturally super stiff So it was like so hard to get her legs through the little holes and then she would get stuck. Oh my gosh Okay, I guess we So we stopped going to playgrounds for such a long time because, Dallas couldn't go anywhere with her wheelchair, she couldn't go on the jungle gym or the slides, or she couldn't find swings, so it just became like a place of wasn't fun.

So, a friend of mine was like, Hey, did you see the town made this inclusive playground? And I was like, inclusive what? What is that? I had no clue what they were talking about. They're like, yeah anyone can go there, and they're having this , grand opening, and do you want to go? And I was like, sure, we'll check it out. 

So we went there and , they had the rubber flooring, which we've never seen before. So she just was soaring all over the playground in her wheelchair. And they had a ramp to the jungle gym. That was like the first place she went to. And then they had this contraption. And it had this big door that you open. And we open the door and she rolls in there and we're looking at this thing and we're like, what is this? And somebody was like, that's a wheelchair swing. So we were like what?

They have swings for wheelchairs and this metal thing and it had a ramp that folds down And I'm one of those annoying moms that don't films and take pictures of everything of their kids. They're like, Oh, me too. And I'm like, okay, this is going to be cool.

Like you've never been on a wheelchair swinging before. I have to film this. So, I bust out my camera, they were showing us how this wheelchair swing works. And we got her all fastened in there, and then I have my camera in my hands, and then we were with some friends, and one of the kids pushes her on the swing, and she made this laughter, this screaming laughter that I've never heard her make.

Rhandyl: It's pure joy. Yeah. Oh, I love that story. 

Katrina: I've told this story like a million times every single time I cry.

I remember I had, I'm like, the tears started coming out of my eyes and I was like, Oh my God this is what, It must feel to see what inclusion looks like what it sounds like what it must feel like It was like 

Rhandyl: yeah, so i'm sure that that was so inspirational for it was Recess project.

Katrina: It was literally like The fire burned in me that day and I was like, how did we never see this before? I want to show, the world like what this can be like for kids. And if you think about how important play is for children, it's the most important thing. And for so many years, she was excluded from this. important part of childhood because she couldn't access it and to see that it's actually something that can be accessed for kids with disabilities and It doesn't have to be something that parents with disabilities have to avoid That was when we started sharing all about inclusive playgrounds and accessible playgrounds.

And it's why and how the Recess Project started. So, we were posting a lot on Discover with Dallas about inclusive playgrounds. And a lot of people would be like, are you going to start a nonprofit, to build an inclusive playground?

Because a lot of these inclusive playgrounds. are built by non profits, but I was like, I don't want to start a non profit to build one playground. I don't know what I want to do yet. And it wasn't until last year that it, a light bulb went off in my head. And I'm like, do you know the most important place for these kids to be included is at school? These playgrounds do not exist in schools. And it's the one place that is almost forced. exclusion. As a parent that has a child with disability, you just don't go to the community playgrounds that are not accessible. You have that choice to not go. And in school, they don't have a choice.

I mean, they have to go outside, they have to have recess, it's a mandatory part of education, whether it's accessible or not. So why are we not focusing on creating the school playgrounds accessible when they are forced to be excluded, and it's like the one place I feel like I can only imagine being a child Like Dallas and having recess, it's, it has to be one of the first places as a child that you reAllieze that being disabled really freaking sucks.

Like here, sitting here as all of my friends are playing, it's where children learn their self confidence. It's where they learn their problem solving skills when they have that unstructured learning. And not only what are we teaching our non disabled students, we are teaching them that they belong on the side. They don't belong with us. So it benefits not just the students with disabilities, but the non disabled students, so it's, 

Deonna: well, and inclusive playgrounds can be great for everyone. Like we, we could talk all day about how much we hate wood chips and gravel, sand and wood chips are my nemesis. But I mean, It is sad in my daughter's situation at school and her nurse and her teachers try to include her, but they poured concrete out to an inaccessible playground.

So my daughter just sits there and watches her friends play. She can't play out on the grass where everyone's playing. And so, It is incredibly frustrating when your daughter comes home and says she has to sit and watch her friends play, like, all the time. It sucks. Yeah. So, tell us about do people sign up to possibly get a grant for their kid to, to get a accessible playground at their school, or how, what does the Recess Project do? Like, how do you interact with it? 

Katrina: Yeah, so we're still, in, in grassroots right now. We started our establishment February 2023. So it's only been a year and we're still trying to figure out. Yeah, we're still trying to figure out There's so much need for this because the majority of school playgrounds are not accessible Like you wouldn't believe how many yeah reaching out like how can we help and I wish we you know Had like a bajillion dollars just to help every single school But I feel like a big part of The Recess Project is It's just starting a movement of our impact is going to be, bigger than providing an inclusive piece of equipment, but let's try to teach parents how to advocate for this, in their own schools. And spreading awareness through our social media platforms of what are some things that schools can implement to make their playgrounds accessible? Because a lot of it is, unfortunately, just not knowing the proper way to design it. Yeah, because a lot of the people that are building the school playgrounds, they're just not thinking about the students with disabilities.

They're not thinking Oh yeah, maybe we should put, accessible flooring or a ramp to the jungle gym so a lot of it is just the educational piece. So we're on our second project right now. So our second school so the equipment is super expensive. So that's why. Oh, sure. Yeah. So as we grow, we'll be able to donate more pieces of equipment, obviously, but The schools, aren't as fast as what we can provide, educationally. So we're fundraising for what's called a WeGo Swing, which is more of a glider than a swing,

Deonna: It starts at state levels too like in Texas woodchips are considered a good ADA approved flooring, well, a wheelchair cannot be pushed through wood chips.

It has to be the rubber or the little turf or something like that. But, and it's really hard for me because like on a personal level, we live in Texas where football reigns supreme. And it's so hard for my mind to imagine that these school districts will be.

pay for these massive football fields, but then they can't splurge for a little 20 by 40 foot section. I mean, it's just so, so hard. The uphill battle that we face just trying to get our kids to be treated just like basic human beings. So, I mean, I think it's a really great thing. And If you are listening to this and you have the means to donate to something, or you want to donate to something in this disability community, I feel like this is a really good one because something positive will have come out of this on a real level.

You're not just throwing money at a huge organization. This is something that'll help somebody for real. 

Katrina: Yeah. And the impact is the entire school community and you can even go beyond that because a lot of the school playgrounds are used by the Community itself after school hours So you're gonna have adults with disabilities Who have children that also need to access their playground and I feel like we don't talk about enough about that right like Disabled adults have children and they would like to take their children to playgrounds if they can't access the playgrounds, then they can't take their children there.

So, a lot of the school playgrounds are owned by the park districts because they are used, by the community. So, the impact of changing one school playground is hundreds, if not thousands, of people are impacted. So, I think just a lot of people need to think about that. Not just thinking about well, there's no just one disabled student at the school, you know This is too much money just for one student, but it's no, this is yeah every student This is for every community every person matters. Every person. Yeah. 

Rhandyl: That obviously needs to change and it's why we're doing the things that we're doing and projects that you're doing because I think that the biggest thing that this world needs is the awareness.

 Like you said, these typical children that are playing on the playground, it makes such a huge, Mark in their life if they were involved on the playground with their disabled classmates and like you said, the parents that are disabled being able to take their kids to the park. . It's a domino effect. So, the argument of the financial aspect of that shouldn't be accounted for, but it's definitely, unfortunately does, but I think that this nonprofit , this recess project is Is very inspirational and please donate to this if you feel inclined and you have the means because it is so important for everyone.

Deonna: I think this is a good thing, too, to make people reAllieze that if you have a playground at your kid's school and it's not accessible, go to the administration, go talk to them, take your kid out there, make them meet you at the playground and show them, because a lot of times it's Ignorance, like blissful ignorance, they don't know, and I did that, and although we didn't exactly get the outcome that we wanted, now I'm on their radar, and they know that this is something that I'm not happy about, and so I'm hoping, with a little persistence, it will work out in the long run, but don't be afraid of those people.

They are there to, you And your kid matters just as much as anybody else. And so, sometimes it takes a little courage to confront people. I feel like parents of disabled kids are very confrontational, so we're fine. But you know, 

Katrina: you have to be, because if you don't make a loud enough noise, when your child is. Experiencing injustice, then they're just going to push you away, especially if you have a young child, even you're not thinking about the school playground, but the sooner you make noise about that, the better, because it takes years. To fix an accessible playground. Yeah, so hopefully if you're listening and you have even a toddler and you know where they're gonna go to elementary school, find out if their playground is accessible and if it's not, make the noise, start it now.

The first person you want to go to is the director. of facilities. The director of facilities is the number one person that you want to contact with. Tell your principal, just make that noise. And then hopefully by the time your child gets to school, they'll have an accessible playground. Because it's not something you really think about until they go to school and they tell you.

Oh, hey. Yeah, I don't get to, you're just, you're not in that mindset yet, but the sooner the better. No, you're right. Yeah. Yeah. For sure. 

Rhandyl: That's great advice.

Deonna: Well, thank you so much for coming on with us. I think this is a part of the show. life that most people outside of our community don't think about.

I know I never did until it just hit me like a Mack truck. And then all of a sudden I'm like, Oh my gosh, my child who was climbing to the top of the slide now can't even get past the barrier to get in. To even sit underneath and watch her friends play, so it was just a huge awakening. And I hope that someone's listening and is inspired to donate to your cause.

And so we're so thankful that you came on and told us about your daughter and your project. And we are excited for what you're doing. 

Katrina: Thank you. I had so much fun talking to you guys. Thank you for having me.

**Disclaimer

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.