Disability Pride Month

In this episode of Raising Disabled we asked our Instagram and Facebook friends what "disability pride" means to them as the parents of disabled kids.
 
 Disability accounts we recommend:
 
 Accessible Adventures @accessible.adventures
Joy Davis @everydaywithjoy
The Autism Dad @theautismdad
Callie Colwick @calliecolwick
Megan DeJarnett @megandejarnett
Nina Tame @nina_tame
Rebecca Koltun @rebecca_koltun

Thank you to the following friends of Raising Disabled for their comments:

@hkwoodley
@amber_l_robertson
@mariespero
@caelajeannettewrites
@psykodrjulie
@vkretchm
@wheelstratedtales
@scarlettandmama
@littlefacelens
Breanna
Estebana

Mental Health App mentioned in the show - Finch

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Transcript

Rhandyl: Hey guys Deonna and I are back and we didn't give you guys a catch up on our last episode. Our lives have been a little crazy lately, summer and all the things. We just wanted to catch everybody up on what's been going on in our lives the last few weeks to a month. And so, Deonna, what have you guys been up to? How was y'all's 4th of July? 

Deonna: It was good. We went to Artesia. We were gonna go to New Mexico anyways and just hang out with my mom. And dad and family because my husband was working out of town and my son was at camp in New Mexico. And so we were going to go anyways. And then my Nana passed away. So that's my mom's mom.

And so we were going anyways. And then we ended up going longer and just doing all that and it was okay She was just so done with this world. Like she missed my papa so bad, , it hits different when it's a situation like that, but it's still worse a bummer It's oh man, I grew up next to this woman.

She was a huge part of my life. And so it feels really weird now that she's not here. That was my last grandparent. But yeah, we went to the fourth and it was really good.

 My brother who passed away. I got to be with his son and that's always exciting. Yeah, it's just a really exciting thing to be with him. We went and watched the fireworks and it was like, one of those memories that you're just like, oh my gosh, I wish he was here. Like, We're sitting in the car and we're watching the fireworks and my brother was a huge fireworks person.

Loved him. He was so dangerous. I was the opposite. Real careful and safe. It was the pyro. Oh my gosh so stupid all the time with stuff. He, his son was sitting on my lap and just every firework that went off because they have a really big show in Artesia and he just was like screaming his head off so happy.

And , he's the cutest thing ever. So it was cool getting to see them. We dyed allie's hair pink and so just a little bit . So cute. Yeah, me and my sister-in-Law did that and she just thinks she's so like punk rock now and just loves it. So it was funny, but it was good. Like lots of cousin, aunt, and uncle, all the things, time and stuff. Did you guys go out of town? 

Rhandyl: Yeah, we did. We went back to our hometown Shamrock, and , same thing, we just had lots of good fellowship with friends and family cousins, all the things. There was lots of family in town, and so, Remi was not a fan of the fireworks. Yeah. All the loud sounds got to her big time this year.

I think in the past when she's really enjoyed it, we've been pretty far away from the fireworks. Right. So that she can see them and she likes them, but the sound is too much for her. And she refuses to wear headphones or anything over her head or ears. Oh, yeah. So, we had to get her out of there quickly.

But my son Barrett was obsessed. He was just belly laughing and kept asking for more and more and yeah But that's funny because you were talking about you and your brother So me and my brother had an experience this fourth we were both pyros. We were crazy when we were young with fireworks and really stupid But we used to make these things called sparkler bombs and you get a bunch of sparklers , the tale back in the day was they had to be red sparklers, but I don't really think that's the case.

But anyway, you bunch them all up and you tie them up tight and then you pull the one out of the middle and you start it and then it basically sets the others off. Shoots this huge flame. And so my dad had been bothering us for the last Are you holding it though? Like in your hand? No. No. Oh, I was like, are you nuts? Ha! Okay. No, it would be really bad. No, you either Yeah, I was like, that's not a good idea. You stand them up on even ground or you have something to put them in. Right. But it's been, gosh, it's been since high school since I've done anything crazy like that. But My husband and I, we got married in 2010, and for our exit to the car, we did the sparkler thing.

Yeah. My parents have had these sparklers for almost 14 years, and Oh, they're from your wedding. My dad, oh my gosh. Yeah, they're from my wedding. My, my parents have had them. I didn't even know they still had them. Majorly expired. Yeah, my dad was like, did not let my mom throw them away when she was cleaning out stuff this summer and was like, Danton, which is my brother and Rhandyl need to do a sparkler bomb to get rid of these.

And I'm like, okay, so we ended up doing it. We thought it was going to be a dud. It took us forever to get them to light. They were like the big long metal ones and they were just super old, so they were hard to light. But anyway, we did that. And it. It definitely put on a show. It was this huge flame like shot and we had a lot of the family was out there watching and it was just really funny but so that was a fun little that's fun yeah back to A memory that we did when we were young and dumb, and we did it again in front of our kids. I was like, oh my gosh. The good old days. But. I know. Not the good old days. Yeah, it was fun. 

Deonna: It is funny how the Fourth of July brings back a lot of kid memories. And. So much. It really does. But yeah, I was actually surprised. Allie does wear headphones and we were still far away and she was still like, put my headphones on, put them on.

People are shooting them off closer to us. You can't control that. But she was more open to it than I thought she would be. Like, I thought she'd be like freaking out, but she wasn't too bad. She did the poppets. All my cousin's kids put them under her chair and she rolled over them. And that was fun and 

Rhandyl: cute thing.

Deonna: Yeah, and so I know it's hard I feel like as disability parents 4th of July is probably not the most favorite holiday because of just all the things like that, like the loud sounds and the fire and all that, so, yeah it's a wild holiday, 

Rhandyl: Yeah, sometimes since we updated you guys last, I actually did a continuing education course for my work. And it was a parent perspective of trach and vent patients. And it was just me talking to speech therapists and occupational therapists and physical therapists about the parent perspective and also given my perspective as a therapist I think a lot of therapists are a little uneasy when it comes to really medically complex kids. 

Deonna: Yeah. Oh, for sure. 

Rhandyl: There's more and more of them surviving now because of all the technology and everything. And so there's more and more kids that we're seeing that are medically complex, thankfully., they had asked me to do that, so it was actually really fun to be able to basically do what I do on the podcast here with you. But it was also an educational thing for my co workers and it was all throughout the company and state. So that was cool. Yeah, it was fun. But what else has been going on with you?

Deonna: Well, we had to say goodbye to one of our nurses. She went on to do something different. So we had to say goodbye to Jessica and that was really hard. Like she was one of our OGs, you know, she was one of our first ones we had. And, it's hard when they leave like that. And you know it's coming a lot of the times.

You're like, oh man, they get a new job or whatever. But that was tough. Just, and it's a very unsure feeling as the parent when You have a nurse that's leaving you because you're like, Oh my gosh, I have to replace you. And that's a very stressful process and sometimes a long process, but we're seriously blessed because we hired a girl named Macy and a girl named Lauren this week.

And so, now we only have one night that's open still. And. So it's just huge and they're both so nice, and the last month was really stressful, and we like to share the fun stuff we're doing, but I mean, it was really stressful this month. I don't know what it was.

Oh my gosh. 

Rhandyl: I mean, I feel like you and I keep taking turns on who has full staff and who's sleeping and who's not. Yeah. Oh my gosh. It's one of those things that just ebbs and flows and it, I always try to tell myself whenever things are going good and we have full coverage not to get too comfortable, but then it's like, yeah.

And when it actually happens, it's like a. Punch to the gut. It is. Especially when it's one of like you said, your OG nurses, someone that's been around and knows everything, and just not only just trying to train a new nurse and find a new nurse, but on top of that, you're, you are the main caregiver all night or all day. And On top of all that stress. Yeah. 

Deonna: Well, and Dane does like, Dane, my husband, does everything that I do, but he also works shift work as well. So, last week, I had a full blown panic attack. I'm not even embarrassed to say. It was like, he was on nights. I had spotty night nursing.

I just There's moments when you're in this life, and this is for a lot of things, like anyone who has stress, anxiety, , but when you're in this life, little things can become big things, and then big things can become almost unmanageable feeling, and it's Very hard. And parents who listen to this will get it.

But I mean, I just couldn't breathe good. I was freaking out. And so, I'm okay now, but like me, me and the kids downloaded this app called Finch. Remember the the nineties, like Giga pets or Tamagotchi or whatever they were called, where you're taking care of a pet. Well, it's like a self care app, but you're taking care of this little pet and you have to do your little, you get to choose what your things are that you do every day, like your goals or whatever.

And if you do those things, it takes care of your pet for you. And so me and Cole and Allie did it and it sounds really stupid, but it was nice. Like I was realizing that I was not taking care of myself at all. Like I was just pouring from a bone dry empty cup and I lost it last week. 

 But we went and saw moonlight musical, which is a Lubbock thing and it's just an outdoor term. Community theater type thing. We went and saw Moana, and that was really fun. Allie loves going to those.

I'll be able to talk next time about it, but she's going to a camp where she's doing a theater production, and so I'll have to tell y'all about that later. It's so funny. 

Rhandyl: Yeah, I can't wait to hear. 

Deonna: She's having fun and doing well with that, but. Yeah. Our fun thing today is our air conditioner's out, so I'm sweating like crazy.

But this Oh yeah, 

Rhandyl: and it's over 100 degrees today, so I cannot imagine. 

Deonna: Yeah, I'm in this closet, which I've turned into a podcast studio thing, and it's so hot in here. I'm like sweating like crazy, but I called this company that actually supports our challenger baseball league that me and Rhandyl's kids do. And so they're called on the double, they're outside right now working on my air conditioner, so I had to tell them. I was like, I have a kid that can't get too hot. Like it's just what it is, yeah. So, yeah. Shout out to them because they came out within a few hours. I'm like, I love you. 

Rhandyl: Yeah. But yeah. Hopefully they get it fixed. So y'all can sleep tonight. 

Deonna: Oh my gosh. I know. Me and Dane sleep with it freezing cold. Yeah. So do we. Do y'all's night nurses have to wear sweatshirts in the summer and stuff? Yeah. at your house. 

Rhandyl: Yes. Yes. 

Deonna: A lot of our nurses are friends with each other and I guess they were like, yeah, telling this new one, Hey, you better take a sweatshirt to their house because it's freezing in their house. But I don't know. It's, I can't sleep with it that hot in the house. It's crazy. 

Rhandyl: Yeah. We actually put in like mini split is what it's called in Remi's room because All of the equipment in there gets so hot that I mean, even just the air conditioners doesn't keep it cool enough. And so they definitely 

Deonna: Oh, the concentrators? Oh, they're so hot. Does she sleep on a concentrator all night long? Oh, it's so hot. 

Rhandyl: Yeah, it is. It gets hot. 

Deonna: Ugh, but yeah, I mean It's hard with summer because you want to be like, Oh, it's magical. We're having a magical summer. And that just hasn't been my experience, but I know it's been fine and we've had lots of fun moments, but it just last summer just had so many fun memories.

 Last year we did where every week we did a different country and I mean we were going all out we were like I remember eating the food making the recipes like probably annoying the heck out of everybody with it but like it was so fun but then this year somebody at my Nana's funeral was like what's the theme of this year's summer for you guys and me and my son were like survival yeah and like that lady what's coming next okay That's a fun conversation, but no, it's been okay.

We're making it, but I don't know. Yeah. 

Rhandyl: Something that happened a couple of weeks ago, my best friend from back home, she's was pregnant with her third pregnancy, but it was identical twins. And so she'd been seeing a doctor here in Lubbock every other week. And so I was seeing her a lot more and it was her last visit here and. Her and her husband brought the kids. They have an older boy and girl It was almost the, their daughter's almost nine and their son's five. And she had asked me to watch them while they went into the ultrasound room because they won't let kids back there. And so we were just hanging out in the, yeah, we were just hanging out in the waiting room and it was taking a little bit longer than they had expected.

And anyway, long story short, they ended up hospitalizing her. And so I had the kids for the afternoon and overnight. And then they ended up. Going to Amarillo to deliver and they had a semi emergency C section the next day. And so she was at she was 30 weeks and four days 

and so they're doing great, but she's living the NICU life. She's, which she'd never done before with her other two. And so yeah, They've been living , the whole NICU life, and I've been talking to her a lot over the last couple weeks and it's just crazy because, I'm trying to help her through this and it's like reliving that whole thing also.

Yeah. In my mind a little bit. And I just, not fun and no. And so the girls are doing good but it's just, they're displaced. Even though they're closer to home, they're still not home. And it's just, it's man, just no fun. And I, but I can't imagine doing it with. other kids at home and also having kids in the NICU at the same time. I, I always felt so bad for those moms all the time. Yeah. And so, but anyway, I am hopefully going to get to see her and the babies. This week. So, I look forward to that. We've had fun with some friends over the last few weeks, just playing outside and. Splash around in the pool and things like that. Yeah, but yeah, that's been our last few weeks 

Deonna: Yeah, I, I'm ready for school to start and for it to cool off, especially right now when I'm sweating so bad, but but yeah, that's what we've been up to.

And so we do this just to give you guys a little glimpse into what our actual day to day life is, the good, the bad and the ugly. So that's why we decided to do this, but we have a really good episode coming up. It's Disability Pride Month, and we talked to a lot of parents about what that means to them, and we got some really great answers. And so it was a good episode and we will see you guys there. 

Rhandyl: My daughter Remi has had the same zing stander for five years. These standers are made with kids in mind and are made to grow with them. The Zing line of standing products provide up to 30 degrees of independent leg abduction to promote hip socket development.

 Zing standers feature anatomically correct hip abduction pivot points located directly behind and in line with the pelvis. Proper offset on the leg supports allows for the entire leg to abduct without the need to adjust the knee or the foot supports, use wedges or any other position modifications.

Rhandyl: You can learn more at zingstanders. com 

Deonna: Hey y'all, welcome back to Raising Disabled. So July is disability pride month. And so we thought we would just ask our listeners what that means to them because we got so many different answers. And so, , we just put it out there, asked what disability pride means to them. And most of the people that answered us are.

Parents of disabled kids just like us. And so we just want to talk about some of these answers and we're always so thankful when you guys answer our questions because it makes this better and you guys had a lot of different points of view that I really thought. Painted a big picture of how we all feel.

Yeah. And then we're just, we're going to talk about kind of some things that we feel about it too. And so we're just going to jump right into it today. Our first one is these are from Instagram. These first ones are, and I think it's Celine but her name is little face lens on Instagram, but.

, her comment when we asked about it, and you can go read everyone's full comments under our question from the other day, if you want to see like what everybody said, but we just pulled a few, but she said, I'm so unbelievably proud of our daughter and the wonderful little person she's growing up to be.

I'm also really proud of my husband and I for the journey we've been on since she was born. When we became part of this incredible community that opened her eyes and changed for the better for me through disability. , disability pride is what I want my daughter to have and what I strive for every day.

I want her to grow up knowing, understanding, and embracing every bit of her beautiful self and her story. And I want to have pride in her uniqueness and to wholeheartedly love and love who she is. And she said, that's what disability pride means to me. So. I liked a lot of things out of this because first of all, she says she just loves who this little person who her daughter is growing up to be.

And I, I feel like as parents of disabled kids, it's easy for us to see that they are this person. It's, they're a person and a lot of that sounds so basic and silly to say, but when people see, yeah, like when people see our girls, I don't think they see them that way. Really, a lot of times it's just, Oh my gosh, like that girl has a trach or that girl has a wheelchair.

Rhandyl: All the accessories. Yeah. 

Deonna: Yeah. And so it's really cool when people get to know us and they know that she's a person and that she has interests . But that part , stuck out to me, just that one little word, just that she's growing up into this.

Cool person and yeah, the people who are willing to get to know her are gonna be blessed by that and the people that aren't are missing out, 

yeah, what do you take away from this comment? 

Rhandyl: So I Took away like how much? When she talks about her husband and her and I yeah, I can agree with that Like how much that my husband and I have grown in our relationship through sharing this caregiving journey and like embracing this life together Yeah, it's so much different than what we had pictured obviously for our life as parents and oh for Like future things but I feel like it has definitely changed it's broke us and made us stronger at the same time. So that's really that was a big takeaway. Like, 

Deonna: I like how she was saying to just to, and this is something that probably has to be taught, I think, but just embracing their beautiful self and their uniqueness. And there's things Like my kid knows when people are being weird towards her, like it's, she knows.

Rhandyl: She can sense it. 

Deonna: But it's really hard because sometimes I'll tell her, , we try to build up self confidence in her and things like that, but it is, it's hard as parents to teach your kids to embrace who they are. Even when they're more quote unquote normal. So telling your kid to embrace their self when they're so different than everyone else, that's such a hard parenting task to undertake.

And it sounds like these people are trying to do what we all are trying to do, but it's okay to be. Proud of who you are when you're different and I feel like the world's a little more open to that than they were 20 years ago. Yeah, for sure, but it's still really hard. So 

Rhandyl: yeah So the next comment that we had was from caregiver mom, Katrina and they're at scarlet and mama on Instagram. She commented as a new mother to the disabled world, I'm just so amazed how wonderful this disability community is and how helpful everyone is and that she's so proud to be part of this movement. 

And that really struck me cause I put myself back into eight years ago whenever I was new to this journey. And it's just amazing how much more support there is now compared to less than a decade ago for the disabled community. People are becoming more open about their struggles and their triumphs. And that in itself is disability pride right there. I mean, , Just to hear a new mom of a child with a disability and all the stresses that come with that, to comment something like this about how she's found so much community that warmed my heart because that's what we're doing.

That's what we're, what you and I started the podcast for. That's really what, drives me in a lot of ways. And so to hear a new mom feel. I've seen and heard and a community made me happy to hear this for sure, because I definitely didn't feel that way eight years ago. I felt very alone and I didn't find a lot of helpful community. So it's definitely getting better. 

Deonna: Yeah. And , I came into it later, but even a few years ago, people weren't sharing what they are now, or if they were, I didn't know. There's. part of that too. But sure. I like how she said movement because even like things like PTSD or depression or stuff like that.

Like people I used to always be like, Oh my gosh, get over it. You're fine. That was like my viewpoint. And now I'm like, like today I just had a horrible day. It was horrible. horrible. Like you just feel super anxious. You're worried about the future.

And just like silly stuff can snowball out of control. And back in the day, nobody would say that they would just have like straight up mental breakdowns. And now it's okay, it's okay to share these little micro things that are happening. Cause it helps you longterm, yeah. So 

Rhandyl: mental health awareness is just. In general, is, has been so great. 

Deonna: Oh, for sure. It's way different, but, and part of that is our knowledge of it, but still. So another girl, Rebecca, hers is whale straited tails. That's funny. She says, I think for me, it gives me hope for the future to see so many adults with disabilities being loud and proud, educating others on what their life is like.

The good and the bad, and it gives me hope for my son's future that even though he has a disability, he can still have this amazing and fulfilling future. And that part about just seeing all these adults sharing their disability journeys, because we don't like me and you don't actually know what it feels like to have a trach or to be.

in a wheelchair all day long, like our girls but there's people that I follow who are adults who know how our daughters actually feel. And it's been really good for me to see what's going to, sometimes it's hard because I'm like, Oh gosh, I hadn't even thought about that.

And that's going to be a problem that she has but overall, it is cool seeing them go on trips and airplanes and do these things that I thought in my head were impossible or just not going to happen and so I've enjoyed following These people, and they tell you straight up I feel like disabled people do not care.

They tell you every detail for the good and the bad. Like they, I follow some paralyzed adults and they'll tell you stuff that I'm like, Oh my gosh, yes, that's what we deal with with our daughter. And so I like how open people are and how they're not ashamed of it. It's just, they're proud to be who they are. And so it's helpful to us. 

Rhandyl: People that are out there talking about it, it helps you prepare for, the possibility of, the future things that , she'll have to deal with down the road. 

But what I took out of it is the comment I just feel like this is there's hope for humanity, , it gives her hope for her son's future, and it's just one of those things a reminder that, helps you get faith in humanity, yeah that's what I took out of this comment for sure. 

So Valerie on Instagram, she mentioned that she's proud of her child for advocating for herself and others with disabilities. And this made me feel really good, just having the disability awareness movement isn't Not only allowing caregivers to feel like they can advocate, but it's helping disabled children learn to advocate for themselves.

Yeah, the more they see us doing it then it's just going to continue as they get older and grow and realize, hey I can advocate for myself to whoever it may be, whether it's, a teacher at school or their doctor or into their adulthood. Seeing us as caregivers advocating for them and then them in turn realizing, Hey, I can advocate for myself.

Deonna: Yeah advocating for yourself is huge. Like with Allie, we had to advocate for her alone. She couldn't do it. She was traumatized and everything. But now she's coming out of some of that a little bit.

And oh yeah, she'll tell you like, I am not doing that or come fix this or do that. And sometimes I'm like, ah, like it is difficult. Like this parenting. caregiving side, because sometimes I'm like, no, you are doing this because this is what we're doing. There's lots of times at school. She's yeah, I just told the teacher I'm just not going to do that.

And I was like, no, you are doing that because 23 other students are doing that. So you're doing it, but like, you have to figure that line out. But it's kind of funny, but. She has to be able to stick up for herself because the world is not going to be easy towards her , so she has to figure it out and we try to model it like today.

It was funny. We're leaving the movie theater. And this person had parked in the stripe zone, like right up by us, which is all of our number one pet peeves. Yes. And my son, who's a few years older than her, if you haven't been listening, to the podcast He walked up and he's Oh my gosh.

And I was like, like we're going to get in the car. It's okay. But I was like, I'm annoyed and we're going to do a little PSA right now. And so they took a picture acting annoyed with the car and my son's What happens if we scratch their car? And I'm like, they shouldn't have parked there.

So like all bets are off. I don't know. I'm not going to be super careful with this person's car. They parked too close to my car, but they were laughing cold. I just want to get a little scratchy. I was like, me too. Let's just get a little scratchy. But we did it. We're nice. But it was like in that moment, they both, we're advocating for themselves in different ways, and it just, and I love seeing my son advocate for her, and you'll get to see that someday, and it's, it's a good feeling when this person who will be a part of their life, hopefully forever, is You know, is got a little bit of that feistiness in them like we do because they're gonna need it, they are, but yeah, that's awesome.

The advocating is huge when they can do that for themselves because they may not have us forever, what's great is fear alert unlocked, right? 

Rhandyl: So Julie, her comment it hit me hard. So she's commented, it's hard for me to accept the term disability pride because what happened to my child was a result of a medical malpractice. I love and accept him, but to celebrate someone hurting him doesn't fit for me. 

So I guess really I'm going to turn this one on to you because you have, even though it wasn't necessarily malpractice. Yeah. Allie's injury. , it's kind of a similar situation. So how did this comment, how do you feel about it?

Deonna: Like some people when they read this, they, it might upset them or something. It doesn't upset me because I know exactly what she's saying. It's really hard if your kid gets misdiagnosed or has some sort of birth trauma, like, where they end up with cerebral palsy, or the list goes on and on.

There's a million different things, but I know what she's saying, because For a while, and we talk about this in another episode that hasn't come out yet, but for a while, it was just like, I don't want to be a part of this disability community. I don't want to do this. This is a horrible tragedy that's happened to us.

, there's nothing positive about it. It's bad. And over time, like getting into this group, you realize a lot of us have had. similar situations like this where something went wrong, whether it was our fault or no one's fault or a doctor's fault or, whatever. But I, there's two things I thought of.

The first thing is we all think doctors are so smart and they're perfect and they never make mistakes, but Oh my gosh. Like they do stupid things all the time on accident and that's hard to understand and, accept that doctors are going to mess up with your kid. 

Rhandyl: They're human. And sometimes, unfortunately, it's,

Deonna: yeah, your kid could die or something. It's very serious, but we've always told our nurses that take our Daughter places do your best. And if things don't work out, one day you did your best, that's all you can do . But I totally know what this girl's saying.

'cause I love and accept Allie too, but I'm not like, woo, spinal cord injury, let's go, this is so exciting For sure. It's a complicated feeling. 

Rhandyl: Perspective. But yeah. Yeah. I get this too because , for a long time, there was a lot of guilt and blame for on myself about, what was happening in utero or whatever. , or potentially her birth, the traumatic birth? Who knows? No. So I, I caught myself questioning. that a little bit similar to her feelings whenever this question was asked, but 

Deonna: It's a tough one. I mean is the word pride is Complicated because you feel like it's something you achieved that you should be proud of and like this isn't like It's just different which we'll talk about this in a second, but I do understand what this girl's saying, like she didn't sign up for this and now she's in it and it just, the word pride maybe is tough and I totally get that.

Me too. So our next comment was from Kayla and she's Kayla Instagram, but she said, I'm struggling with this question. I want to comment on how beautiful and difficult and surprising our life has been since my son was unexpectedly born with a rare genetic disorder. But I catch myself wondering if Disability Pride Month is mine to celebrate.

Yeah. And I'm assuming she's talking about she's not disabled, so she can't. Do that and I do get that like we aren't first person experiencing it So it's should we I don't know. 

Rhandyl: Yeah. I can see where she's coming from and I struggle with it, too But for me, it's part of advocating for my disabled child and making their sure that he's included and seen and that's just it That's a huge part of disability pride because yeah, like for children like my daughter, You She's nonverbal, and it's hard for her to be able to communicate. And, so as a caregiver, being able to help her, be included and do all these things I think it is partially mine to celebrate, but I do see, Her perspective on it so 

Deonna: if your kid is not going to speak probably in their lifetime Like if they're nonverbal or something like that you have to be there voice of pride and everything. Whereas like for me, it could be different at one point. Like I may have to step back and allow Allie to decide at some point how she wants to proceed with this stuff. Which right now she's I'm going to be a social media influencer. And I'm like, you know, there's a path for you to do that because people are doing it.

But, yeah, I know what she's saying, and even me I have MS, which could turn into a gnarly disability at any point in my life. But even that I don't show physical symptoms of it, and It hurts like really bad, but it's affecting me, but not to the point where I'm like in a wheelchair using walkers and like stuff like that.

And so even me with that, it's like technically I have a disability, but compared to my kid, it just feels so less like that right now. Of course. Yeah. I know. I know what she's saying. I think if you speak as if you have a disability, that's where it can get questionable.

We don't actually know how our kids feel, but we can, elevate their stories and I think she, probably doesn't feel like that right now and that's okay, but it's okay to elevate your kids stories. Share them if, if they're okay with it, yeah. 

Rhandyl: But yeah, I agree. Okay, so this other follower, Marie, and she's on Instagram at Marie Sparrow.

. So she said that she's a grandmother and she wants other to realize that we are all one accident or illness away from being disabled. It can happen to anyone, and how we treat people is a reflection of our humanity. 

And I love this comment so much. This perspective is gold, and it is so true. Because anyone in the blink of an eye can be thrown into this world, and Yeah. The awareness in itself is something that I wish that everyone understood, and I think the more that we celebrate disability the more that humankind will accept inclusion, it's just Yeah, I was like, this was spot on because it's so true.

Deonna: Yeah, like I've seen similar versions of this before where it's like saying how Becoming disabled is the only minority group that you can instantly join at any point Yeah and you know you think about all these other minority groups that just get treated like trash and Disability is no different like I've You We've all been there and felt how that feels, but yeah, I think that I always treated people well, but I treat disabled people so differently after being on this side of it and also following accounts, which we're going to talk about here in a second, but , If you aren't aware of the fact that you, it could be you, it could be your kid.

That really freaks people out when they realize that my kid wasn't always like this. Like it blows their minds when they see old photos of Allie, standing up or videos of her running. They're like, Oh my gosh, wait, she was okay. And I'm like, Yes, like this could happen to your child like it could happen to anyone and it's it is really scary But the thing too is when they see, your daughter at the little shamrock festival or my daughter at doing little fireworks I think it's good when people see us doing our regular life because it makes them realize If I did become disabled or if my kid became disabled I could go on like, it's, it's not the end of my world, and even though it definitely feels like that some days, like today or, it feels like that for a long time, but, that's part of the reason I share a lot of things we do, is to show people, hey, if this happens to you someday, it will be alright it will suck sometimes, but, you can do it, right?

With our support, you can do it. It'll be okay. But, so I liked that too. I think it's good for people to remember that, but people don't like to think about it. 

Rhandyl: I know.

Deonna: So our next one is at Amber L. Robertson. And she was saying, I need everyone to understand that inclusivity and accessibility should be a way of life and something that benefits everyone.

This one I liked, I put this one in here because But most things that are inclusive or make things accessible, they benefit everybody. I've seen so many things where people are like, Oh, really? They're going to change that whole playground for one kid? No the playground's gonna be better for that one kid, for sure.

And then, it's probably just gonna be better for everybody in general less dangerous, or, whatever. And then, for the community there, Everything that people do for a disabled person helps other people. Like it's not just all about one person, but so I, I do think that's something very important for people to.

Understand, and sometimes it's expensive, but it's worth it if one kid, not because 

Rhandyl: one Yeah. Is happy. Yeah. One kid gets to play with their peers and their peers see them playing. We talked about this when we talked with the Katrina with the recess project.

They're seeing firsthand and getting to play with their disabled friend or classmate. Like that right there is. inclusion definition and, it's not going to be some rare thing if it's something that they get to go to recess or go to on a play date to a park that includes these kids it's not, yeah, the argument is always finances, of course, and things like that are not, inclusivity is not cheap ever, but it's definitely Life changing for everyone yeah, the argument that it's oh It's just for one person is it shouldn't that needs to just go away. Yeah, sure. No for sure

Okay another caregiver Heather It's @hkwoodley on Instagram. She says that Disability Pride means being proud of my daughter for everything she is, and how hard she works, how she advocates for herself, even at the age of seven, and how she's already changed the world around her for the better, and that she's so proud of herself and her husband and other families like ours who advocate. And to make the world better for our kids one step at a time.

And I love the one step at a time. It is so true. The more and more that we speak out and demand to be listened to. The closer this world is to a better place for the disabled community but it's not going to happen overnight. We obviously know that. So we've seen over, say, the last decade, a really big movement, but just, I feel like it's going to be, just like she said, one step at a time. We just keep on keeping on. And yeah, then, our children, our grandchildren. This hopefully won't have to be a huge discussion. It'll just be the way it's supposed to be. And it won't be a big deal. I, that's my hope for the future. 

Deonna: Oh, me too. I like how she said also just acknowledging how hard her daughter works. Yeah. And that's a lot of our kids work is behind the scenes. No one ever sees it.

And Disabled kids work so hard and they just don't get the credit for that. Disabled kids, should all be super proud of what they do, even when they don't fully sometimes even understand what they're doing and why they're doing it.

, It's amazing to me watching kids work so hard, doing PT, OT, just, all the things, like they go through so many hard things. They are little rock stars, basically, but yeah, I love it. 

Rhandyl: They're tough. 

Deonna: I hate that they have to go through it, but yeah, they are tough as nails. So Brianna, who is part of our Facebook group we like her. She's always answering all of our questions, huh? She said, not being afraid to go out and do things with your disabled child and not getting embarrassed at people staring when they're being themselves, meltdown and all. And this is crazy because when I read this one, It was really hard for me at first because when I would take Allie out, I know what she's saying.

Like I wasn't embarrassed or anything, but like I have eyes on me. And you do too, like 24 seven, if you, if our daughters are with us, everyone is looking at us. Like I told my husband, I used to wear like boy shorts and t shirts every day with like flip flops. And now I feel like I have to actually get ready every time I leave the house because it's like everyone's staring at you all day long.

And if you don't look like you're put together a little bit. You're going to get judged for that. But that sounds dumb, but if you know what I'm talking about, you know what I'm talking about, but like it is hard because a lot of disabled kids don't behave in a way that is traditional or that people think, and I, there's so many.

Misconceived, misconceptions about that. 

Rhandyl: Yeah, I thought back to one of the first times that we took Remi out After bringing her home and we went to Fall Festival and it was awful. I was so angry at the world for not understanding. She was having meltdowns. We were having to bag her. Everyone was just staring, which, I get it. Cause it was like, it was pretty traumatic. And it took me a while to get comfortable being in public with Remi. Yeah. But, Now we go everywhere and I just hold my head high and try my hardest to make sure that everyone knows that just because that she's in a wheelchair and nonverbal she can't have as much fun as the rest of us. So I know we're always doing wheelies and spinning her on her wheelchair. It's her favorite thing we do it doesn't matter where we're at. 

Deonna: , she had the most fun of anyone at the baseball fields. I'm pretty sure, like those little hands were going the whole time.

I just I don't know if other parents of disabled kids feel this way, but I can just feel people's eyes just peering at me 24 seven. And. Allie doesn't have meltdowns, but there are moments where her legs will just start shaking like crazy or things will just happen and it can feel embarrassing.

Like me and you are pretty confident people, but it can feel embarrassing sometimes just having that many eyes on you. And I do think that is part of disability pride with the parent. It's being like, you know what? I love my kid. We're going out and everyone can just get over it and deal, deal with it if they have a problem with it.

But it is it's a hard thing if that's not like your personality. Yeah. So yeah. 

Rhandyl: I like to Hey, how are you doing? How are y'all today? Whenever it's just like constant stares Let's acknowledge the situation here, 

Deonna: yeah. I'll be, I usually am like, Allie, can you say hi? And she's like, hi. And then they're like, oh my gosh. And they like, look away or freak out. And you're just like, okay. Yeah. And then she's like, what was their deal? I'm like, I can't even just. Yeah. Yeah. You name it. It's happened. It's funny. 

 So this other mom, Estebana, she said, saying that I have a child with medically complex needs. And then telling people all the reasons why your kid is amazing and badass and they shouldn't look at you with pity or sadness because it's the best and hardest times of your life.

Rhandyl: Yeah. And I love that because it's like what we just talked about. So you know, I've been given so many pity parties from others and myself. Oh, me too. And myself. 

Deonna: Yeah. But. Those are fine though. Yeah. Yeah. Those are acceptable. When it's you. Those are acceptable. 

Rhandyl: But she's right. The more we tell people how wonderful this journey can be and the blessings that come from it, the more eyes that are opened to it. Yeah. And I always just really try to, especially in the public eye, I am a positive person. Not to say that it's not. It's just for show, but I really try to, not only for myself and for the others around us, but also for my daughter to be like, this is fun, this is cool, even though I'm not doing a lot of the things these other kids are doing or other people are doing, just staying positive when you're in kind of an uncomfortable public situation or there's so many scenarios, but There's so many blessings that can come from it, just telling people how awesome your kid is, and not even about their disability, just what they love, and their hobbies, and their likes, and wants, and it's very important to share that with others that may just see, the surface area of your kid from all there is that is, that goes along with it. 

Deonna: That you can see and not see. 

Yeah, we've had it's so funny, the different interactions we've had, and some are the pity, sadness ones, some are the nosy ones, some are the people coming up and telling you how amazing your kid is, or whatever.

This was funny, the other day we were in Walmart, and, This man who was probably like 60 or 70, came up to Allie and I like whispered under my breath to my mom and dad, I'm like, Oh, here we go. And like he comes up to her and I'm like, you never know what they're going to say.

And this happens to me every single time I take Allie out, somebody has to come have a conversation with me about, their friend who's in a wheelchair or, they have to make a connection with you. And he was like asking me about her injury and I'm just like, Oh, this is not fun to me.

But he, then he said she's going to be okay. I just know it. She's going to be okay. And I said, yeah, she is okay. She's doing really well. And I know what he meant, but I, I turned it and was like, yeah, she's okay. And then he gave her 20 bucks. And it was so funny because Allie's like, well, that was weird, but it was worth it.

I got money. Oh my gosh. But I think he wasn't sure what he was going to say and it was a little pity moment. And I think he realized we were okay and it was like, fine, yeah. But it just was so funny. 

Rhandyl: That's kind of like polar opposite of what we were just talking about when people are just staring and not saying anything. But I feel like as long as they're not touching her, oh yeah. I agree. I appreciate the people that come up and want to share stories. 

Deonna: In the Southwest, people touch your children. They do. That's just the way it goes. 

Rhandyl: But there's even a cultural thing, Yeah. If they don't touch someone that they feel like is hurting or needs, huh. Yeah. Yeah, it's like a blessing if you touch them. If it's bad for them, or yeah. Yeah, it's bad for something, but yeah. I've had a sign on Remi's wheelchair That says Please don't touch your germs are too big for me. Yeah, it's right there hanging on her chair all the time. 

Deonna: And people still touch her face. 

Rhandyl: Oh, it's still yeah. No, it's oh They obviously didn't say that but no

Deonna: or they did, yeah But I don't know it is a difficult thing, but I'm really happy with everybody that sent us these comments because it does make me think about things that I'm proud of, either about my daughter and what she's doing or about myself and how far I've come or my husband or.

My son and so it was fun to read all the comments and see where everyone's coming from and this is all of their real feelings and opinions and I could relate to every single one of them in some way. So yeah, for sure. Uh, We're so thankful for all y'all for sending these to us. 

Rhandyl: Yes. Yes. Thank you. It helps a lot. 

Deonna: So what do you feel about it? Like when people ask you what it means? 

Rhandyl: Okay. So what does disability pride mean to me as a parent of a disabled child? 

And so honestly, I never really even thought about this question until we asked our own followers and listeners. And so I was like, Oh man, that's tough. And so this is corny, but literally the first thing I did was Google the definition of pride because there's so much like the word pride can be triggering to a lot of people.

And because, a similar word is prideful, which is typically taken as a negative. Like negative. Yeah. And but basically, so I'm just gonna be cheesy and read the definition. So it's a feeling of like deep satisfaction derived from one's own achievements or the achievements of those from whom one is closely associated, or from qualities. Hey, there you go. Yeah. Or from qualities that are widely admired. And I'm like, okay there you go. Bye. And I also wanted to look up some synonyms because I just like to look up synonyms of different things. And the ones that stood out to me, so the synonyms of pride, joy, delight, satisfaction, comfort, contentment.

I'm like, Oh my gosh, that is so that really helped me. So I pondered on that a lot. And so obviously as host of a podcast such as this, it means a great deal to me. And so I, but I do feel like it took me a really long time to get here. I spent, a lot of years waiting on Remi to be a typical kid. Possibly due to things that physicians said to me, like we were talking about earlier in the beginning about prognosis. It was just hard to accept that Remi was going to be disabled long term because there's still, and there still are so many unknowns, but once I was able to brush off the expectations, And overcome my denial, my own denial.

Yeah. There's such a sense of peace and now I really live in the present and try to focus on the now and just realize that only God knows what the future is going to hold for my disabled child. Yeah. Yeah. 

But after looking at the definition and synonyms, basically I feel like the answer is simple to this question. It's that I admire and love my disabled daughter for all that she is. So she's overcome so much in her almost eight years of life. She's the toughest girl I know, and she can line up a room with her smile. Oh yeah. Or a baseball field. Yeah. Yes. I am so proud to be her mother and her caregiver, and I try to not take a day for granted because we know how fleeting their lives can be.

. And just the things that she continues to achieve. Randomly she'll do something new and it's just gives me this little spark and so yeah I'm just so proud of who she is and can't wait to see who she'll become and all the New things and progress that she continues to make and yeah, 

but what about you? What are your thoughts? 

Deonna: Yeah, I had a couple. First of all, I feel a lot of pride for being in this community because I feel like it's the most supportive community on the planet.

But these girls. Just will understand my life in this way that is just crazy and a lot of my friends have the same faith as me and like things like that, so it's like double, but they're just so supportive and when they find out something is not okay or wrong with us or something's going on, they like check on you.

It's just a different feeling. And so it becomes like a family feeling and it's. That's a pretty big deal. And so if you are in the disability community in any way you can celebrate this month because you, there's a reason you're in the community. And it's because like you said, there's someone you love that you're proud of, or if it's yourself, but that's a pretty cool thing.

But. I'm obviously proud of my daughter she's overcome so many things too, and it's been really hard for her, but the confidence that she has is crazy. And I. 

Rhandyl: She's a firecracker. 

Deonna: Oh, she is. And she thinks she's fabulous. And I'm so glad she does because that would be extra hard if she was like worried all the time about everything.

But even this week, she's going to do a camp and she's like, Yeah I'm going to try out for a part. It's like a theater camp and I'm like, okay, here we go. And then at another camp, she's like, I'm going to sing a solo. I'm going to sing a song. And I'm like, okay, are you sure you want to do that?

But we're going to let her do it. But , we're proud to be your parents. And. We want her to know it's a twofold thing. We want her to know that her disability could actually be a very powerful thing. And that's with every kid whether they know it or not, their disability is impacting people in a very large way.

And they don't have to say a single word their entire life to have a very powerful impact on people. Exactly. That's right. Exactly. Yeah. 

And then, but I also, we always let her know, and this is part of disability pride, is, it, with a lot of things you're proud of, it can be really hard, and it's okay to , To acknowledge that I feel like it doesn't have to be all like happy all the time like 

Rhandyl: you're like on the trenches.

Deonna: You are, but you can be proud of it too. Even though it's so hard, but so the other day I saw this quote

and I was like, Oh my gosh, this makes me think of disability. And it said, acceptance doesn't mean resignation. It means understanding that something is what it is and that there's gotta be a way through it. Oh, I looked down at the bottom and it was Michael J Fox, which if you don't know, he is Famous for being disabled and also actor and everything.

Like I, that really hit home with me because we've accepted it. There's people in different like parts of that journey. Me and you are like, yeah, full acceptance. Let's move on. I don't think it means just being like, Oh let's give up, we're disabled.

What are you going to do? , it's knowing that it is what it is. There's nothing most of us can do to change it. It's happened. It's something that's happening and there's a way through it. And. I feel like with Michael J. Fox, I saw him playing guitar with Coldplay the other day. He has not let it just get him down, and it can get you down some days. He has a lot of hard days, but there's a way through it, and I hope that most people listening to us will choose. That their way through it is just to celebrate their kids and celebrate themselves if they're the ones that are disabled.

But I was thinking about how most things in my life that I've been proud of were things where I went through a really hard thing to get to something I wasn't an athlete, but a lot of athletic people, they go through really hard things to get to this thing they're proud of, or people that climb mountains, they go through these hard things to be proud of something they've done.

And. It's not 

Rhandyl: Yeah, most goals that are achieved are never just yeah. they're worked for. There's No. There's They're hard hard. 

Deonna: Hard fought for. There's some quote I saw the other day and it was saying basically the most beautiful places have difficult roads to them or something like that.

And it's so true I was just coasting through my life and then this thing happened and it's hard, but the beauty is way better. And I just I'm honestly just proud of myself for surviving this. I feel like I can celebrate disability pride because I'm still here. Like it's been that hard. For most of the time I'm okay. And that in itself is like something to be proud of, cause it is one of the hardest things I think I'll ever go through. Yeah, I hope if it gets harder than this, no, thank you. Honey farm and mission. Yeah, for sure. I'm not going to make it, but kind of final thing is 

if you're listening to this right now, you are probably part of the disabled community in some way or trying to become educated, but if you are not following Accounts on Instagram or Facebook or TikTok where someone is disabled, you're missing out on a huge blessing , you're missing out on knowing what disability people want you to do and , how they want you to treat them. And 

Rhandyl: Just awareness. Yeah. It's so important for, even if you don't have a disabled child or anyone. Yeah, completely removed. Disabled in your whole family or friend group or whatever. Follow. Follow them. 

Deonna: Yeah. I I was following this girl, and I'm gonna tell you a couple of accounts, but I was following this girl named Callie Colwick.

And she was an amputee from a sepsis situation when she was pregnant. And I was following her before Allie got hurt. And I just remember looking at her and thinking, this is amazing. This girl has been through unimaginable things that I could never, ever do. And she's still making these cute valentines for her daughter's class, and she's doing this, and she's just a mom.

She's a regular mom. And then this all happened, and I feel like I've talked to her a couple times about this. Oh my gosh, I, now that I'm on the other side of this, and I'm in your club, I can't. I just it, I look at her in a totally different way, but, oh yeah, but I knew this person is going through this and it was, even though I wasn't a part of this yet, I followed her because I wanted to understand.

Her life a little bit, just a little bit. And that, I think you should follow accounts for different political groups other than yourself and different races, different everything, because that's the way that you are informed about , what other people feel like, and you're not so narrow minded, but For sure with this disability stuff, like we love all the people we've talked to, you can go back and see everybody on social media that we've talked to one of my favorite accounts of everyone we've talked to has been Accessible Adventures because , She's showing you that she is living her life and her son is everywhere. The other day I saw her Pushing him through a river. 

Rhandyl: Yeah, I saw that 

Deonna: Oh yeah, but I loved it. It was like, it's great. This girl is not, her son likes water and man, she is gonna get in hot water and, but she's a good account for people who just wanna follow a parent who is. Not allowing it to slow them down and there's so many accounts like you could go on our Instagram and look at who we're following and follow some of those people but a new guy that I've been listening to I mean He's not new but like new to me is the autism dad.

Have you ever seen his stuff? Yeah, and I I don't understand As much about autism as I do some of these other things. Sure. So I started following him and I've learned a lot about how that works and how they feel and what they do and just all the different things. And and I like him, he's just like very blunt. It is what it is and he's just telling you like it is. 

Rhandyl: Those are my kind of people. 

Deonna: I, yeah, me too now. I used to like the sugar coated stuff, but now I'm like just tell me. But, I like him a lot. Are there any parent accounts you like a lot? 

Rhandyl: Okay, obviously one of my faves is Amanda Griffith Atkins. Oh yeah, for sure. She's the best. We've talked to her a few episodes back. An account That I really like a lot of their posts. They're really positive. It's called Everyday with Joy On instagram and they're so great. Definitely would recommend following them. They also don't hold back from all the things. 

Deonna: , they're the ones that do the bike stuff.

Yeah. I like the, yeah, I like their stuff too. Some of the adult counts I like, like I said, Callie Colwick, she's disabled. Her count is beautiful, and she does all these really neat Crafts and she's just fun to follow anyways, but the fact that she's disabled makes it so amazing.

Like she just got her driver's license again for the first time in a really long time. And I was just like, yay. I was so excited for her, but another one that I like, these people are really funny, but Megan DeJarnett and she has SMA, but she, Is really funny and they have a podcast now as well,

and her son is disabled too. So she's a disabled mom with a disabled son. And so she brings. Both points of view and she's really great. I definitely hope we get to talk to her someday 

Rhandyl: Yes 

Deonna: another one if you're looking for an adult so this girl her name is Rebecca Colton and we can list these people but Rebecca was injured and has It's like looking into the future of Allie.

She is paralyzed and is on a trach, is on a vent a lot. And she posts really funny videos, making fun of how hard it is, which I always crack up. Like she made a joke one time about how she wasn't worried about getting kidnapped cause she's in a 500 pound wheelchair. I like died laughing because Allie has made the same joke.

She's yeah. They're ever going to kidnap us, they'll just kidnap Cole and not me because they won't be able to get me and I'm like, oh my gosh, what kind of sicko humor is this? 

Rhandyl: Yeah, I've made jokes like that so much oh we're not going to have to worry about even kidnapping you.

Deonna: No one's taking Remi, she's a little too hard to take care of. Yeah. I was laughing because when Allie's no one can kidnap me, I'm too high maintenance. And I'm like, Oh, the fact that you think they're going to be caring about your care. Okay. Yeah. Yeah. You're adorable. But another account I like to follow is Nina Tame.

 I share her stuff a lot. Yes. But she is from England and she Post the funniest things like oh my goodness she basically brings up the way that disabled people are treated and just yeah Makes fun of it and it is so funny and she calls her legs just for decoration and so we do that with Allie now like I'm like, Allie, these are just for decoration.

So let's get some cute pants on them. They're not working for us. But I mean, Nina's real funny and She, to me, she makes light of it, but not in a irreverent kind of way. She knows it's hard, but she just jokes about it and makes fun of how people treat us. She did a video the other day about how and people do this to Allie they say the same about five or six cliche phrases to us all the time.

Oh, you got a license for that thing or, like stuff like that. And you're just like, Oh no. You're the 5, 000th person who said that to me. But yeah, so I think it's good to follow. Parents of disabled kids and and actual people who are disabled as adults, because it's, it just is good for you to realize what's going on in that, that community.

Rhandyl: Okay, so that sums up our disability pride month episode and We asked everyone what disability pride means To you as a parent of a disabled child and we got great feedback and we Really appreciate our listeners and our followers being active in the comments and active on our page and listening to our podcasts just continue to do that because Deonna and I we are only Thank you Two opinions and follow these other accounts and also be active in these accounts because it does matter every word that you comment and everything you share, it means a lot to us. And we hope you guys enjoyed this and happy disability pride month.

**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.