How to Talk to Your Kids About Disabled People

In this episode we tell parents of typical children:

• Why they should be having an intentional, continuous conversation with their kids about people with disabilities,
• What they should teach their children to do and say (and what not to do as well),
• and we shared opinions from our listeners and fellow caregivers about what they wish you were teaching your kids about their disabled child.

Special thanks to the following friends of the show for their comments:

lovetoemma
alvesmomkickingcask
emily_mommato4
happygolandry
saratothebeth
Aracely Ginn
specialneedsparentjourney
Heidi Walton
Ruby Moseley
annabusby1
daidrahamlin
theunboxedfamily
disorderrarediseasefilms
unbalancedraremom
annabethburnham
valcirino1
hkwoodley

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Transcript

Deonna: Hey, y'all. Welcome back to Raising Disabled. So before we get started, we're just going to kind of update you guys on what's been going on in our lives in the last couple of weeks. . I've been at school with Allie some this week and we've been training some nurses and we're interviewing some nurses.

So it's just, that's always, the nursing side of it is tough sometimes, but it's a full time job. It is and you're managing them all and, and honestly, like you can't live without them as far as like our situation, probably not, but then it's just really hard, but we've been at school, which I've said before, me going to school with her is tough.

Like it's nice when kids are being nice to her. It makes me feel really good. And that's what we're going to talk about today. But then when she gets. When she gets ignored or, treated funny or stared at, it's just like soul crushing to me. So it's a mixed bag of really crazy rollercoaster of emotions when I'm at school with her, but her new school and everybody, yeah.

It, which is good and bad, but everybody at her school was so friendly and nice to me. Cause like I used to be a teacher and I know that schools do not like parents in the schools. Really? It's just you're under, you're under a microscope the parents are all watching you and listening.

And so they were all so nice and really went above and beyond to make me feel, okay, being there. So that was good, but yeah, we didn't do too much other than just some of that and we're getting ready to go to Houston again. So that's always a big undertaking, lots of appointments coming up and a sleep study, which Dane's volunteered to do the sleep study.

Cause she does better when he's up there, like going to bed, like, When I've done it, she's either gotten admitted to the ICU, which was not my fault, but, or just was not going to sleep good, was being a weirdo about it. So she does better with Dane. So since we're going all the way there to do it, we want to put our best foot forward.

Which is, yeah. Good. Hey, that takes the stress off of you. Oh yeah, I told him he can sleep the next day and me and her will go out and do something so he's all for it. He doesn't care. That'll be fun. So what'd y'all do the last couple weeks? 

Rhandyl: We had Remi actual birthday on August 27th and so she turned eight. Yeah. Yeah. And. It was a school day so she went to school and then I made sure and scheduled my work schedule to where I was home before she got home from school and had all of her gifts ready, had the pool ready. It was a nice enough day for us to get in the pool and some of her favorite people came over. Her favorite person probably ever is her. Physical therapist, so she was over. That's what I was wondering if you were gonna say yes. Yeah, she came over and then a couple of her nurses were here and just some. Friends and and then I actually left little brother at daycare until pick up time because I really wanted sole one on one attention with her, and that is almost impossible with my clingy three year old, yeah. Yeah. That was, it was nice. Nice. That's smart to do. To not have to. Yeah, it was really good and she enjoyed her special day, and I had gotten her a balloon. I bet. And tied it onto her wheelchair that morning before school, and I tied it into the front of her wheelchair, because I wanted her to be able to see it and play with it, and whenever the nurse got home, she was like, okay, mom, now you can sit in front of her for the rest of the evening, and she can bang you in the head with a balloon all day long. I was like, Oh, I'm sorry. I thought that might happen, but it's her birthday. So it's fine. You're fine. It's just a burn. You're fine. Just get hit in the head. Yeah, it was funny. That was cute. That's cute. And she was just like when we had their family birthday combination party we talked about a few weeks ago. She loved all of her new clothes. That was her thing this year was her clothes. And so it was cute. 

But unfortunately, for me, her birthdays are really hard. Yeah. You get all the photo reminders of Oh my gosh. I hate those. Traumatic birth. Yeah. Yeah. Traumatic birth, the early NICU days. There's so much trauma that surrounds her birthday, for me especially. Obviously for her, but luckily she was an infant and doesn't remember. Doesn't remember it. Yeah. 

Deonna: Do you get weird when the weather feels the same as her birthday? Because with Allie's injury, when the weather starts to be that time of year, I can feel it in my body that it's coming. Do you do that, or is that just me being weird? 

Rhandyl: Not necessarily the weather, but, , just the week leading up to her birthday, I start feeling blue. And it's Yeah. Yeah. I hate that, but I know but every birthday is a miracle at the same time because it's just, it's seeing all the amazing progress that she's made year to year. It's every emotion wrapped up in to one and it's just hard to explain, but the PTSD is still there and every August 27th and the surrounding days, those reminders and feelings and are just. Elevated , and I hate that, but it's just the way it is for me around her birthday and no, I get it. But I'm never gonna let that darken her day, but it's just, it's just hard.

Deonna: It's your experience though. And Yeah. Did you ever think when she was born that way that she'd be here eight years later having a birthday? It's just like crazy. You know? I don't know. It's crazy, 

Rhandyl: but I still never envisionRemi Older than she is literally in present day. I just I don't know if it's like a if it's like a protective response that God's giving me or my brains, I just for yourself. I don't ever envision her being any older than What she is. It's and but no,

Deonna: I do that. I don't think it's a good idea sometimes because I will envision Allie being like in middle school or high school or college. And then I'm like, no, I can't think about that. I need to just. 

Rhandyl: Yeah, I used to have dreams when she was a baby of her being a little girl, like she is now. But I have not had anything. I just, I don't know. I really think it's a protective response which I'm thankful for is that also, makes me obviously grateful for every, not necessarily every birthday, but Every day that she has day with us because she you just never you just literally never know She's she throws us for a loop quite often. So yeah. Yeah, she's drama sometimes 

Yeah, but we've also been watching the Paralympics some And yeah, oh my gosh, these athletes are just amazing 

Deonna: Have you seen the people shooting with their shooting archery with their feet? I'm like, what in the world? It is amazing. I had never seen that until the other day.

Rhandyl: I can't even pull back a bow with my arm. Hardly. Yeah. It's gotta be a light weight. It's insane. And the balance that they have, it's, I'm in awe any time I watch any event. I mean 

Deonna: I wonder if the tension is the same, cause yeah, like a grown man can have a hard time sometimes pulling back that part of it.

Rhandyl: Oh, I'm sure they have to have this. Yeah, the tension. They have to have limits, I'm sure. I'm not sure how it all works, but I'm sure they have to have a specific parameter. To compete, but yeah, it's amazing.

Deonna: I liked that guy that was a I think he was a jumper and he was running to that Ezra, which he's a member of the track team at I think USC and not like a Para track team. Yes. I heard about the track team and I'm like, wow, but he did really great but yeah we watched some of the swimming and it blew my mind watching people with no arms swim like And not the backstroke like face down in the water. I'm like, how do they do that? I saw a guy with one leg doing high jump. Like and not , another prosthetic leg, like just one leg. That's it. So it was crazy. Yeah. 

Rhandyl: Yeah. I was really interested in the the visually impaired. Athletes, especially in like the track and field, I was watching, I guess it was the long jump, how , they have people that are yelling at a specific area or they have specific sounds at different. It's so cool. I'm like, man, it's just awesome. 

And look at these athletes. These humans, they have true grit, and for those of you guys that are maybe not from the South or know what that phrase means. Cause that has been coming up ever since the Paralympics, I'm just like, Man, these people are the example of true grit and so I wanted to say that on here and so I looked it up on Google and basically, it's funny because I've never really thought of the definition of grit. It's just something that we all know and have grown up to know what it means. But it says it's a positive personality trait that describes someone's ability to persevere and stay passionate about a longterm goal. And I'm like, yes, that is the, that's like all disabled people. Exactly. But, all high level athletes, and of course other people have traits like this, but these athletes are on another level. They're so inspirational. It's pretty cool. Yeah. 

Deonna: It was neat to see. And I was like, it would have the different sections and it'd be , like this event is this letter and these numbers. And so we were Googling cause my kids wanted to know okay, what's this group's thing?

Are they blind? Are they, whatever. And so we were looking up and it, so it was cool to be able to see what they all. Had in common that was putting them together , but I, yeah, I didn't think Allie, sometimes Allie gets weird about watching people in wheelchairs.

Like she said, it's hard for her to watch someone else. Go through what she's been through. I don't know if she just feels Oh man, like their life's hard. Like mine. I just don't even, it's so hard, but she actually watched it the other day for over an hour and she hated the regular Olympics.

So I was surprised when she was actually wanting to watch it, but it didn't amaze her that people. Not exactly like her, but similar situations were doing these amazing things, you know So it made us happy. At one point there was a Christopher Reeves Commercial it was a documentary about his life he was the guy who played Superman and was paralyzed I think riding a horse, but he's trach vent like Allie.

It's a very similar injury to Allie's and we're watching this commercial for this documentary that was running in the middle of the Paralympics. It is like instant waterworks, , Allie was like, okay, turn it off.

I'm done. Like after that she was done, but it was cool how they were showing so many disabled people in ads during the Paralympics. And I told Dane, where is this during the rest of the year? Let's bring it all the time. Cause it was ads for everything, but they were using disabled people and all the ads. So I'm like, okay, let's like. Make this a thing. So maybe let's keep them rolling, please. Yeah, I know, but no, that was, I feel like it got more attention and it usually does. And it was cool too, because I think a lot of the regular athletes were promoting and supporting the para athletes, which I thought was cool. Cause I'd never seen that before. Really. To this level either. So that was cool.

Rhandyl: There was a spouse group. There may have been more than one, but the husband was in the Paralympics and then his wife had won gold in the Olympics. Yeah. 

Deonna: Hunter Woodall or something like that. Yeah. Yeah. They're cute. I was like, Oh my goodness. They're so cute. 

Rhandyl: So that's what we have been up to lately and we Really enjoyed this next episode So you guys tune in?

Rhandyl: Hey guys, welcome back to raising disabled We asked our Instagram and Facebook friends If you could tell other parents one thing about how to treat your disabled child, what would it be? And we got a lot of great feedback. I had, once 

Deonna: I, 

Rhandyl: we posted this, I had a lot of my personal friends reach out to me and were super excited about this topic.

Deonna: Um, 

Rhandyl: I think it's such a hard topic for parents of typical children to explain. And I also think , they may be afraid That they're going to tell them the wrong things to say or how to act. If you're not engrossed in this life like we are. And so hopefully, the feedback that we got from other caregivers and from us will help ease these 

conversations. 

For other parents.

Deonna: Yeah. So we think that this could potentially. Or and my hope is that this could become like an intentional talk that you have at home with your kids when they're very young, like we have these intentional talks with our kids about drugs or sex or these different.

But then this is a big thing. And I don't think parents think about it until their kids said something weird in a store or whatever. And then you're like, Oh my gosh. And you're trying to scramble right there and figure out what you should do or say when we're going to just lay it out for you right now.

And so this is for people mainly, I feel like who are not. living our lives. And so if you are a parent and you want others to know how you wish your kid was being talked about as far as how to interact with them, then this is a good place to start. And so we're going to read some comments that are kind of.

Uh, 

around the same idea, and then we'll talk about them. And , so these first three kind of all have the same idea, but we're gonna read all three of them, cause they all are a little different.

 @lovetoemma said, we welcome curiosity. Don't stare, but come on over and ask questions. Be kind, compassionate, be welcoming and inclusive. Treat her like any other human being. And @alvesmomkickingcask said, don't stare again. The staring came up, just say, hi, my child isn't to be feared.

 And then @emily_mommato4. said, don't stare, treat her like a human first, her disability can come later. So obviously, and staring is one of my biggest pet peeves that kids and adults do to Allie, and it, yes, drives me nuts. And I will tell every parent who ever asked me, teach your child not to stare at people that look different than them.

And it doesn't even matter if it's disability or the way they're dressed or it doesn't matter. Do not stare at other people. It is not okay. And my thing with Allie is she does have a lot of people stare at her. Like she has these pre K kids that walk by her every day at school. Yeah. And they just are like, jaw dropping to the ground, staring at her pre K kids, you're okay, I don't know if I can do that kind of behavior. You're four, but older kids do this and so my pet peeve is the stare My son's pet peeve is the double take when they look at her and then they look away and then they look at her again, like what the heck and stare at her forever and I Don't like that either so they do it,

but I would tell parents Just to tell their kids, if you see someone that looks different than you, just smile, wave, say hi. It's really not that complicated. It's not that complicated, but yeah, staring is probably most of our number one, Things we don't like and so number one thing don't stare. 

Rhandyl:  Staring is the worst  

Deonna: as far as kids go let's say you have never talked to your kid about this and you're out in public and your kid is staring at Allie or Remi or anybody, I think instead of whispering to them and being like so weird and walking away really fast or running away Which has happened to us so many times the kid will be like what happened to her and the mom's like, oh my gosh Shut up, oh my gosh and freaks out and they run away and you're just like, okay you just made me feel like my kid is Frankenstein or something like calm down, 

 If a kid wants to come up to Allie, they can just say, hi, what's your name? Oh, I like your shoes. I like your pink wheelchair. Those interactions are good. , but , I also think that you don't have to say hello and have an interaction with every single disabled person out in public. I think some people think you just have to, and I don't know why that is. I don't know if I'll ever understand that, and some adults like I've seen people talk to other disabled adults, almost . Like baby talk like they don't respect them as an adult of society, but I think that you can just smile, wave, just keep walking. Like you don't have to, I think a lot of people, especially over the age of about 55 feel like they have to interact with Allie, like they don't have a choice.

And you're like, you really don't have to do this. You can just keep on walking, but they just feel like they have to. It cracks me up. But yeah, they kill me. But you. Oh yeah. You do need to talk about the staring at home because that is something that most kids are just gonna do, I feel 

Rhandyl: oh, yeah. For sure. They're trying to soak it all in. They're little sponges and sometimes they just stare and, yeah, they have to understand that. And it starts at home and it starts young, these conversations.

Deonna: And it's funny because I remember one time, I may have told this story before, but we were in The big natural history museum in Houston when Allie was in the hospital. So we had never taken Allie out in public being disabled yet. , she was still in the hospital and we kept running into this mom with her kids and one of the children was disabled cerebral palsy or something like that, but nonverbal, and I remember , Cole was watching them.

My son was watching them all day. And I was like, I think he probably was staring at them and we went and talked about it and he's just like, 

you know, 

, That's how people are going to be treating us soon. And I was like, yeah, it is that is exactly, people are going to, because he was watching other people watch them, and I was like, yeah, this is going to be our life. Like you're going to be being watched all the time. And he was like at least they seemed happy. I think it made him feel good. Okay, , we're going to be okay. Cause they were okay in that moment, but I was staring at them the whole day.

I was like, Oh my gosh, quit staring at them. . But I think it was really more of him trying to soak in everybody else staring and looking into the future like, oh, this is my life in a few months , 

you know.

Rhandyl: So the next few comments we got the first one is from @happygolandry and she said she's just like any other kid, don't overcomplicate it. @saratothebeth Said, it's not that deep. Just play. And then @aracelyginn said, Treat her as you would any other kid her age. She may not be able to react with words as her peers can, but she understands and loves to playfully interact with people.

Yeah, it's so easy to overcomplicate our kids, especially if they're medically fragile like ours and come with lots of accessories. They look scary, but once you engage and learn more, they're just kids at the end of the day. But play is hard. Play's probably one of the hardest for our children and for us as caregivers to witness. And, most disabled kids are either physically or socially unable to play with their typical peers, but you can always find ways to include them. And it's just it's crucial and overlooked too often.

Deonna: Yeah. I think about the fact that sometimes it's funny, like a kid will be talking to Allie and me at school like this past week, and they'll realize that Allie likes something that's the same as them, like Taylor Swift or Roblox or whatever, and it just for some reason blows their mind that Allie has it. Anything in common with them because she's so different than them. How on earth could she like the same thing as them? And it just cracks me up because they're just like, whoa, and the kids who can look past a trach in a wheelchair, which it's not everybody. There's just some kids who are. More, I don't know the right word. I don't want to say special, but they just don't care about that stuff. And a lot of times kids will be really great with her. And then I'll find out like their uncles in a wheelchair or this or that. And I'm like, Oh, okay. That's why they're not so intimidated by it.

But They can make connections and it really isn't as complicated as we make it. Like it, it just, these comments are so true. Kids can play and that's what I was trying to do at school with her because the playground, like recess when I'm at school with her is gut wrenching to me as a mom having to witness it.

And then cause the playground's not accessible. So that's like a whole nother topic. But yeah. When kids go play with her, it makes me love this kid so much, they don't even know who I am, but even for Allie, she gets really anxious and nervous every time she's rolling out to the playground because she knows that Most people aren't going to want to play with her because they want to go play on the playground.

She has to stay up on the sidewalk with the teachers. And that's tough. No kid wants to hang out with the teachers during recess. It really like with Allie, I was showing some kids who showed an interest in playing with her, how to push her backwards in her wheelchair. So she can see you and she was laughing and having fun.

Like it's just. Little basic things if you took bubbles outside with Remi and blew bubbles with her, or, it doesn't have to be this big thing, but to us it's very big, and to our kids it's huge just be with them. It doesn't have to be, I don't know, it doesn't have to be complicated, just like they're saying.

Just because they can't go on the monkey bars with them you can still, there's still so many things, ways that you can engage for sure. 

And even just sitting with them. When Allie has someone just near her, sitting with her, talking to her, it's huge, yeah. Yeah. Yeah. And there are certain kids who are special and they come hang out with her and I'm like, I love you so much. Like it's, that's great. Yeah. But yeah, recess is a rough time. So that is a thing. If your child sees a disabled kid sitting off by themselves at recess, just going and even sitting next to them would be huge. It doesn't have to be this big thing. That's all it would be. And the kid would feel so much better,

so our next group of comments, I'll read them first and we'll talk about them, but the first one is @specialneedsparentjourney. And she said to actually see her and interact with her, not near her. And I got a story about this, but yeah, that one was, That one hit home. I was like, Oh my gosh.

Our friend Heidi Walton said just include her, talk to her. She just wants to feel like people want her around. Ruby Mosley said, don't be afraid to ask about her abilities in an effort to include her. We've had countless friends ask before finalizing plans just to make sure she can participate. You will never offend by genuinely asking in your efforts to include her. Also ask her because she can't answer for herself. Just because she's in a wheelchair doesn't mean she has intellectual disabilities as well. 

And the@annabusby1ce said, Don't ignore him. He loves singing and cuddles. Love him. Talk to him. Even though he can't talk back and play. He's happy. Be happy for him. 

And. The first comment about with versus near a lot of times people play near Allie, but they like, won't say anything to her at all. Or I think a lot of times kids are like, Oh, that's is, am I going to catch that? Is that contagious? I don't, I'm nervous to touch a disabled person or, things like that. But. Our kids can be hugged. They can be touched. They're not going to give you their paralysis or whatever they have, but it was funny cause , we were trying to think of things Allie could do with other kids on the playground cause she can't go play really. And she can, but not the same way the other kids can. Sure.

And so we took the sticker book and it was really funny cause these sweet girls and they were really trying to include Allie and talk to her and play with her, but it was so funny cause I was like, I brought this sticker book so you guys can do it with Allie. And it was like a little paper dolls type sticker thing. And they were like, Oh my gosh. Yay. And they got all excited. They sat down like three feet away on the ground in a circle, all of them. And we're doing the sticker book without Allie. And I'm just like, no, this is not, what I had in my head. And. And I just let them do their thing. And Ali just kept looking at me like seriously. And it was like a fast recess. It was only like five or 10 minutes. And when they got up, I was like, Hey, next time you guys play this, you could set the book in her lap and then she'll be able to see what y'all are doing.

And they were like, Oh yeah, oops. And so they they just weren't thinking cause they were near her, but it was so funny. But when you're playing with a disabled kid, you need to actually include the disabled kid in your play. So it made me laugh, but yeah. I think disabled kids like my daughter just, and yours too, just want to be accepted and spoke to, and when everybody ignores them sometimes if you have a developmental disorder or something, you may not be as privy to all of this, but I don't know, I honestly, I'm not sure how that works because I don't know what they're thinking, but like in my experience, Allie knows when she's being ignored, when she's being left out.

but unless parents are like, Hey, include Allie, she's, just like you, but people don't know. I just don't think people think about it, those types of things I don't say them because I'm like, oh, feel sorry for us or whatever, but it is really hard. But what are you, what are some things you were thinking about this? 

Rhandyl: Yeah, so this made me think, so Remi versus Allie, Remi is nonverbal. And Allie. I think a lot of kids and people in general assume that if someone is in a wheelchair or disabled that they can't communicate in the same way as them and some of the time that's right and then some of the time it's not. And so, Remi. She may not be able to run and play, pretend like her typical peers, but, she loves to do things like play catch, and she loves to go fast in her wheelchair.

, her and a little friend at school, her nurse pushes her in her wheelchair, and then the friend is in a little gate trainer, walker, and they do races. And she loves high fives. She loves to read books. If she's being ignored, she can't express that her feelings are hurt, but I know that it does because when a child does engage with her, she's all smiles. So yeah, she definitely knows and is sad whenever she's ignored and Yeah, it's definitely it's hard. So Not like you have to not get to play on the slides and swings during recess. But yeah just simply attempt to encourage your kid to You Give the kids on the sidelines some attention.

Deonna: Yeah and I forgot to say this I have kids This is something we were talking about and like what Ruby was saying. I have kids Ask me questions about Allie when Allie's right there. So you need to teach your kids. And there are some kids at her school who do this really well.

And then a lot of times I'm there as the mom, which isn't the normal situation. But I'll say like, why don't you ask Allie that? They'll ask me what Allie's favorite TV show is or something. And I'm like, you should ask Allie. And I try to defer all the questions towards her. Yeah, even with adults, like you can never assume anything with disabled people.

Ask them, don't ask their caretaker or their family member, ask them. And even like me and Dane were talking about this the other day. Sometimes we can get in a bad habit of speaking for her. And then we're like, Oh, oops. Like I didn't mean to do that, but , we do that sometimes. So that's our bad too.

But Another thing that they brought up in this that I was thinking about is when people invite Allie somewhere and then they text me or call me and ask me what her needs are or if, they're going to need, like one time she went to a birthday party and the guy made a ramp to make sure she could get into their house. Wow. That's so cool. I know. It was really nice. And then we ended up not needing it and I felt bad, but but when people. That's so awesome though. Yeah, but , when you invite a disabled child to a birthday or something, it's okay to call the mom and say, Hey, is there anything we need to do special? Is there a food? Issue just asking about like accessibility or, anything, but it's not going to hurt our feelings. I don't think I've, I'm sure if you asked almost every mom, they would say, no, like it makes me feel good. You're thinking about it and trying to make sure she'll have a good experience 

 The invite itself is huge because a lot of times people just. Assume you won't come or and sometimes we won't because no it's too hard, but the invite is highly appreciated 

Deonna: yeah, inviting a disabled child anywhere is huge. 

Rhandyl: It is. Yeah. Okay, so the next group of comments, the first one, @daidrahamlin. She said, mine is for a nonverbal child. Give them some time to react to you. If you ask a question and speak to them directly, give them some time before repeating it or just moving on. Sometimes all they need is just a little more time to engage with you. And we had a lot of good feedback on this specific comment and I loved it as well. 

Another follower @theunboxedfamily said my child can still achieve what yours can, it just may take them longer, so don't count them out.

And @disorderrarediseasefilms commented if they are delayed, try to keep in mind all the meanings of delayed. I found so often waiting a bit longer or trying to. The 7th or 11th time brought better results, and it's hard to reset our expectations around response times. 

And, oh my gosh, this is so true. Wait time is so crucial for so many nonverbal kids. Just for Remi, I recently had to have a conversation with her new speech therapist at school, and I'm like, her biggest thing is wait time. Just wait her out. And she will eventually. Answer you, or make a comment, or do something. She will either verbalize something, or use her device, or completely throw her head back and throw a fit. But s sometimes, just processing Which is a response in itself. It is! I don't like this activity, No. Yeah. But. I'm going to throw my head backwards. They just have to process in a way that is not typical. And so, like I said, Remi uses a communication device and she'll answer questions, but it's never immediate. There's always this processing period. And. Just allow that time and don't assume that they can't answer you or react with you.

The large majority of nonverbal kids know exactly what you're saying, right? I mean keep that in mind when you're having any conversation around them, too Like you were saying when people are asking questions about Allie. She can answer for herself But, my daughter , can't always answer the questions that are being asked about her. And I just think. Keep that in mind when you're telling your kids or when you go up to a caregiver with a child with a disability. You just assume that those kids know exactly what you're saying. So keep that in mind because it can be offensive. Oh, yeah, for sure. 

And I think counting them out happens frequently, like you said, in the cafeteria or at recess and that's why us as caregivers. We have to insist on inclusivity no matter what it takes like awareness is key Anywhere. , I feel like all public schools that have Children in special education or any children with disabilities We've got to figure out this whole recess thing. Like it's ridiculous Come on now. It's 2024. We've got to figure it out.

Deonna: I know. But we're not even close to being good on that. Oh, I know. But I do. Allie's she talks and everything. Oh, yeah. , and I had limited interactions with nonverbal kids until Allie got hurt. And then I was just like, Thrust in this world. And now I feel like I'm around nonverbal kids all the time.

And I love it when you say something to a nonverbal kid and then you wait and see what happens. And most people don't ever do that. They just are like, hi, Remi. And they keep walking. They don't want to actually stop and take a minute. But it's I could almost cry thinking of moments where I've said something to a nonverbal kid and then they like reacted to me and sometimes it's not a good reaction, but when they react to you, it's just so cool because I feel like if a nonverbal kid connects with you in any way, it's A huge deal but, yeah, I feel like wait time, and you guys are used to this because you do this every day, all day. But for the rest of us, it's you don't want to wait because it's uncomfortable to wait for a second. 

Rhandyl: Yeah 

Every time Remi finishes her dinner at night, she gets to pick a movie on her device. And she had already watched Encanto during her stander, during trach care. And she chose it again. And I told her, no, you need to pick something different. You're like, I know you want to watch this again, but no one else wants to watch this again. You need to pick something other than Encanto. And she is on her device and she's frustratedly pushing the buttons and she's, she says no. She's we don't talk about Bruno. Oh my gosh. And I just can't help but laugh and be proud of her for that. , and so I threatened her with letting little brother pick a show and then she finally chose something different, but.

Deonna: That's the most powerful thing in the world to let the. Yeah. Oh my gosh, I'm so sorry. Okay, I'll do it. I'll do it. So cute. Oh my goodness. What a stinker. 

Rhandyl: our next group the first comment was from @unbalancedraremom and she said a diagnosis does not change the love that you have. For your child and oh my goodness the love that I have for both my disabled child and my typical child are no different They're mine and their happiness is what's most important to me as a parent. So yeah, a diagnosis a disability. Definitely. There's no changing a parent's love for their child 

Deonna: and I think this is different than some of the other comments we got as far as You might be wondering why would this mom want you to know this when you're getting ready to talk about? disability to your kids But I think she's just wanting to remind other parents , just because our kids that are disabled, maybe aren't going to do what we thought they were going to do when they either were pre injury or before they were born or whatever it may be that doesn't mean they don't deserve friends and a social experience.

And. , other disabled kids can be friends with other disabled kids like that happens a lot, but you're typical kids being friends and being nice and kind and loving to our disabled kids could change their life. Like it really can. These kids who talk to Allie, she comes home and just tells me every single word these kids said to her.

 The typical kids may not even really think about it that much. It's they're talking to other people. It's huge to Allie. And , I think that's why that mom wants you to know that, oh, yeah. So our next one is from @annabethnurnham, and she said, Don't let your own insecurity cause you to not engage with her.

And, I did this for years and years. Like it was too scary to engage with a disabled person. And so I just would stay away cause it was just too hard for me. And I was too nervous and it was my fears, my insecurities. So teach your kids that . They're not always going to do the right thing or say the right thing and that's okay.

 Don't let them be too hard on themselves and don't teach your kids to be afraid of disabled people. And you might be like I'm not doing that. But if you have no disabled people in your life that you even know or you're not at least trying to follow disability accounts on Instagram and learn, or just any of that You're, you are teaching your kids that disabilities, this thing that should be feared or like on the sidelines or taboo or yeah, like that.

And disabled people can be so much fun. They all have seriously twisted senses of humor. Allie, Oh my gosh. Allie always like jokes around about Death and stuff like that and it makes people so uncomfortable and it's hilarious. I'm like, oh my gosh, we all have dark sense of humors from all the bad things we've been through.

Rhandyl: And it's funny remi, She definitely has a dark sense of humor. She fights dirty with her little brother and she thinks it's hilarious when anybody's crying around her, but she, and she loves all the villains. Any villain in any. Cartoon movie. Like she does with the villains. I'm like, it's so funny, but she always has.

Deonna: I love a good villain. 

Rhandyl: Yeah. But yeah, no, same. I was the same way. I blame it on a generational thing. Maybe the area I grew up in a really small town, the awareness was definitely not there. But. Now, I work with children with disabilities daily and to witness their love for the people that show them love and one on one engagement is unmatched compared to any other typical kid. Just like you said, when Allie comes home, all she's talking about is that kid that . Said this to her or whatever. It's what fills my cup up and I'm ashamed of the old me But you know, my awareness wasn't there and that's why we are sharing this to Just hope for the future 

Deonna: And I think it's too about not like when you're teaching your kids about this stuff too, like in this situation is think some kids interact with Allie because they feel sorry for her and we don't want that like, 

you know, if you're not going to genuinely engage with her and be her friend, it's probably not worth it, but yeah I do think kids Look at her and just make little sad puppy dog eyes at her and she really doesn't need that either , but I agree with this about it being mainly about our insecurities It has nothing to do with the disabled person and everything to do with us Being insecure or afraid or uncomfortable, so you have to step out of your comfort zone to be friends with a disabled person. Usually that's just what you have to do. 

Rhandyl: So the next comment was from @valcirino1, and they said, He's overstimulating and having a hard time at the moment. 

And oh my gosh, think about me before kids and all the things I remember saying, in restaurants and grocery stores. My kid will never, my kid will never, all the things. I'm laughing. I will never. I will never. Yeah. Up until really this year, for example, for Remi, for whatever reason applause, whether it was at a graduation or just in a large environment and not even like an auditorium type. It was like, even if a group of friends and family were together and we sang happy birthday and clapping, she would freak out. And it's getting better and better. But it's definitely still a thing. And so there were just some situations where we just had to avoid it or we would have to tell everyone like, don't clap. Don't cheer so loud. 

But a lot of kiddos have these stimming behaviors that , some people may think are behavioral and stimming is a self stimulatory behavior that can be anything from a repetitive body movement, say like arm flapping, spinning, head banging, things like that even to fidgeting with a specific object or a texture. And even auditory stimming, there's auditory stimming some kids just love listening to the same song or the same sound over and over again. 

If you think of these things, if you see a lot of these children are autistic some are not, even my daughter Remi, she's not autistic, but she will definitely be. Please. Stem on auditory sounds she's obsessed with her happy birthday cards, the ones that open up and sing. She'll just play them for hours if we let her, but half the time I'm like, I'm losing my marbles, honey. We got to take it away. I can't do it anymore. You're like, this is not bringing me joy like you.

Yeah. Yeah. But no, if you think of it more of a security blanket or like a coping mechanism for these kids. But I mean my three year old can throw some tantrums and he's typical and That's a different story. But it's definitely there's a big difference between Having a tantrum and being overstimulated and sometimes they look the same. But yeah, You've got to give the caregivers and the kids some grace, like she said. 

Deonna: And if your kid does that all the time, , most of those parents are probably used to it, but they don't need the judgmental looks and stuff like that because a lot of times you cannot reason with some disabled kids. There's just no. There's nothing you can do. , they can't reason in the same way that a typical kid can, but. Parenting a disabled child is very different than parenting a typical kid. I found out really quickly that I can't really get onto Allie in public because, which I wouldn't get onto her really bad, but I can't even barely get onto her. Cause people look at me like, what kind of a monster are you disciplining a little girl in a wheelchair? 

But if you see a kid who probably has some sort of disability , and your kid asks you what's going on, you don't have to give them a huge explanation right then. I think it's okay to even say they're having a hard moment. They're okay. Or, something like that. Yeah. I do think it is good because I didn't even know what stimming was until a few years ago. And certain things like that can look like a tantrum. So maybe parents need to sit down and go through what that is. And because Allie has seen a lot of kids doing that in the last few years and she now can see, Oh, that's what that is. But.

Kids knowing that is something that people do and that it isn't necessarily something that they're choosing to do or that they can control.

But , I do think that's something that kids could easily learn about and they would probably start to recognize it. Allie Oh yeah. Goes to school with a lot of autistic kids and I've already seen a lot of them doing these things and yeah. And at her school, nobody really cares because they're used to it, but most kids aren't probably getting those experiences, so it's a little different. So our last comment before we wrap up is from @hkwoodley and this one made me laugh because it's so true. She said, don't treat her like she's different, but also please remember that she's different.

Yeah. It made me laugh because I want Allie to be treated like everyone else, but then I also want her to be treated like very special 24 seven and no one's going to make me happy on this. I don't know what to think, but I actually thought about this after I read this. I'm like, okay, this is true, but what is the. thing behind this, and I really do think I want the kids to treat her like everyone else. I want her to be included and get treated like everyone else with the kids, but I want adults to all treat her like a magical unicorn princess and, just worship the ground she , not walks on, but rolls on. But I mean, 

, I do think it is funny. It's such a confusing thing from us because we all feel this way. I think we want special treatment for them at every turn, but then we also want their peers to accept them as just another one of the gang. So it's a complicated feeling. 

It is, and I just want to, say that. It is very complicated like you said so I want to give you parents grace While you're trying to teach your children These things to try to help include their disabled peers there's such a fine line and We're never gonna get right. Every disabled child is Uniquely different and trying is basically all we ask That's it.

I do think at the end of this if you're trying to teach your kids , how to treat either a specific disabled person, because I think usually if you're trying to figure this out, there's someone specific that's coming to mind that you know, or your friend's kid or whatever. But I do think the best way you can learn how to teach your kids to treat a disabled child is to tell them, Hey, watch, like in our situation, watch Cole, watch how Cole interacts with Allie. And then just do that. It's not that hard. It's not that complicated because siblings know how to treat their siblings.

And sometimes Cole's giving her a hard time and she can take it. It's, she doesn't have to be treated all sensitive all the time. But I do think that's a cool experience when you get to watch a sibling of a disabled kid do their job and be buddies with their siblings and stuff and, it's an easy way to learn, so I do think that is a good little piece of advice is to watch and, or watch the sibling interact and then take that and tell your kids what they could do or what they should do.

Rhandyl: Yeah, I think that's great advice. I've told my friends, cause they've asked me this before, like, how do I explain this to my kid that's going to school? Cause inclusion is such a big thing now. It's not like it was when we were in school where you literally never saw them. Yeah. Because they were stuck in this one classroom all day and thank God it's not like that anymore. Have disabled kids that may not be in a wheelchair, that may look just like you, but then they are nonverbal. They're unable to communicate like you are, but that doesn't mean that they can't understand you. You still talk to them. You still tell them hi. . Do not make fun of them because they can't communicate in the same way that you can. You just be kind to everyone. Some people are unable to walk around. They may be in these wheelchairs, but they can Or walkers or whatever. Sure. But they can all listen to you and understand you. They have feelings just like you do how would you feel if no one talked to you at school? Make sure and really help them understand that everybody belongs and that , they deserve. a friend, they deserve communication throughout the day, , and the older my son gets, the more I see him and it makes me so proud cause it's like he just naturally, it's not something that we actually have to teach really. 

Deonna: And it's cool 'cause he'll grow up like Cole. It was a sharp difference and he had to all of a sudden change the way he treated her. With your son, he'll get to just be good at it from , day one and yeah, I mean it's a little practice too, but still he'll be able to teach people someday. He probably already is, honestly, 

. So we hope that this conversation has helped you guys realize just what we want as parents of disabled kids, what we wish your kids knew, honestly, what we wish you as adults knew, about teaching our disabled kids, but we're really thankful for all of our friends who gave us these comments because , I feel like we're cheating by using y'all's comments to do these recordings, but it really does help us get this broader picture of what everybody wants. Cause what I want and not be the same as Rhandyl or, vice versa. And so we're just so thankful that you guys are willing to put your very vulnerable feelings out there. And we're just really grateful for that. So thank you so much. Yes. Thank you guys.

**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.