Summer Ideas for Children with Disabilities

Deonna:

 Hey y'all. So it's that time of year and we're getting done with school. Most of you probably when you're listening to this, will have already been done with school, hopefully. And I don't know about Rhandyl, but May has been crazy. Has it been crazy for you? 

Rhandyl:

Yes. May’s always such a busy, busy month for everyone. It's a lot. 

Deonna:

Yeah. Like I'm always hating on December, but May I think is like my new least favorite as far as like how busy we are. But for sure um, you know, school's coming to an end and for us that means new routines, summer vacation, just having the kids at home with you 24/7 and that that has some things that come along with it that are hard for disabled families.

Rhandyl:

Yeah, for sure.  Typical summer activities are not easy or even doable for a large majority of disabled children and families. So finding inclusive summertime activities is really hard. 

Deonna:

Yeah. And watching others enjoy all these. Summer activities with ease, like going to water parks and just doing and going on these massive vacations. Mm-hmm. That can be really difficult for families that have a disabled child. In them. So and in many instances the caregiver burnout just rises. Like, I have been home, I work from home, so I've been home a lot over the last 9-10 months and getting my alone time and all that. And so that's about to come to an end. And I know a lot of moms stay home or. Or even if you're working, you're just working all day and then you come home and the work begins again. So it's, it's a difficult time. It can be fun, but we're gonna just talk about all the things summer. 

Rhandyl:

Yeah. It's just a big transition for everyone. And so we're here to discuss possible ways to support families that are raising disabled; how to navigate summertime. We also wanna touch on ways that you guys can support families that are in these situations, even if you're not. So one thing that we personally do with our family, just to keep us all sane, honestly is routine. It is key. And I've said it before, but we really do try to keep a very structured schedule day to day.

I wouldn't say it’s rigid in the sense, but Right. …really ha, keeping a good structure, routine keeping Remi busy. She has therapies throughout the week and we just make sure, you know, we have certain bedtimes and wake up times, she eats at the same times every day. We just really try to keep a good structure; she has a hard time sleeping if she gets off routine.

And then once that starts happening, it's, it's just like a domino effect. And then she turns nocturnal and then everyone is miserable. Oh gosh. Including her. So, yeah. Yeah. But no, that's just like a big thing at least for me, and I think for a lot of families just keeping a, a routine. 

Deonna:

Yeah, we kind of do that too. It's, you know, we try to wake her up around the same time, go to bed around the same time. And we haven't quite figured out what our routine for this summer's gonna be since I'm working this summer for the first time. But it's gonna new. It will be last year, summer was all about Allie and Cole. Mm-hmm…and just getting to do whatever they wanted this year. And that's where our nurses come in, and if you have a nurse, they can help you with those routines and help you.. for sure. ..keep them going. Something else we were thinking about is how you as a disabled parent, and I've lived on both sides of this, but you don't need to feel like you need to keep up with the Joneses, and the Joneses are families with non-disabled kids. And yeah, it's hard because you hear, you know, out and about or at church or something about things people are doing and you start to compare your life to them and feel like you need to be doing all the same. Things that they're doing and going on the vacation every other week like them. And, and there's a million reasons that we can't do that. It's I mean, even the financial burden of a disabled family, you don't have the money to be doing all these things. And the other thing,

Rhandyl:

The work that it takes to..yeah. ..go on a small trip is, there’s no way.

Deonna:

It's crazy, like, we're gonna talk about this a lot, but I mean, we have like a 10 or 12 page document that is just dedicated to taking vacation things with Allie. Yeah. Mm-hmm. And if you forget one little thing, you are in big trouble and you..

Rhandyl:

Yeah, especially if you're somewhere like. In the middle of nowhere. Yeah. I mean you gotta have, yeah. If you miss one little thing, I mean, you're up a creek. 

Deonna:

Yeah. We go to the mountains and you are not close to a hospital to go borrow something. You are not close to a DME company, especially if you go out of state, do you? I mean, they don't care. 

Rhandyl:

We’ve crazy.  Yeah. We've had a crazy experience with equipment, a few crazy experiences with equipment out of state. Yeah. Which will be for another episode when we really talk about vacationing, but uh, yeah, it's a lot. I mean, we take a generator when we go places like that. 

Deonna:

Yeah. Us too. Mm-hmm. No, I mean, it's insane the things we have to do and think about just to get them out the door on a regular day, so when you're taking them on a vacation that is next level, it's, it's weeks crazy. But I do think I, I kind of used to compare my life to, um, what I was doing before, and feeling like I needed to continue to take them on, on all these trips and do all these things. And you just have to allow yourself to let go of that expectation and know that you can still have a lot of fun, and we're gonna talk about ways to do that, but you can still have a lot of fun and have a really great summer full of memories without having to keep up with those non-disabled families and what they're doing. Cuz it's impossible. 

Rhandyl:

It really is. So, just like she said, you don't have to keep up with the Joneses. Just uh, I mean, there's so many small things you can do. Like for example, get out just getting outside daily. I mean, if the weather permits, you know, getting outside even if it's hard to get out there. But just get out, go for a walk, or even if it's just on your front porch just.. yeah, ..or whatever. Just getting outside for even just a quick 30 minutes with your kiddos. It's, it's very essential. Vitamin D is, is essential. So yeah, do you guys, during the summer, Deonna, do you guys go on walks does Allie love..Yeah..Strolling?

Deonna:

Yeah, we, we try, yeah. We try to go on as many walks as we can and..

Rhandyl:

I love your videos of you guys whenever y'all are rollerblading. Oh yeah. That's like my favorite thing to see ever. 

Deonna:

We, we rollerblade and I am not good at that. Like my husband and son are amazing skaters and you know, I have to hold on to Allie. So if you ever see those videos, the reason I'm always pushing Allie is because without Allie I will fall down quite a bit. So, but I do..

Rhandyl:

That's even better now than when I watch.

Deonna:

No, no, I need her and I also I wish her wheelchair had breaks because we've gotten into some situations. But yeah. But yeah, vitamin D is huge for our kids, but then also parents of disabled kids are dealing with anxiety and stress and depression and, you know, the list goes on and on.

Rhandyl:

Yeah. Our mental health, it's essential for that, for sure. 

Deonna:

Yeah. And so most people probably know this by now, but vitamin D is huge for that. If you are inside 24/7, you're going to feel sad, you're gonna feel anxious. There's, it's just gonna happen. And so yeah, getting outside's huge. 

So something that I, I can't remember who I heard this from back in the day, but they basically said that you need to have something every single day that you're looking forward to. And I live that all year round, but I, especially in the summer you need as the mom to have something that you're looking forward to every day. And you need to try to figure out also something that your kid can look forward to. And cuz I know, like for my daughter, she's gonna miss school. Yeah. Some kids hate school. My daughter's gonna miss school. Same, she's gonna be seeing her friends and things like that. And so I will be facilitating her friends coming over, or her getting to watch her favorite show, which my kid watches a lot of shows, like I'm, you know, disabled kids. That's just a whole different thing. Mm-hmm. Like that whole screen time judgment. I just can't even talk about that because Yeah, screen time is, is different. Yeah. And it's one of my kids only, only sources of entertainment, so, and independence..Yeah, we do a lot of screen time at our house, and so you will never get that judgment from me. 

But you know, with, for the moms too, having something to look forward to. It might be… and, and we have nursing, so I'm only speaking from that point of view, but you know, even if it's like making tea and going and sitting out on the porch and watching like one 30 minute show that you love or whatever it may be. It's different for all of us, but having, 

Rhandyl:

Yeah, I think for me to do honestly the majority of time for me it's my I call it my “wine down time.” Yeah. Mm-hmm. I, I typically have my glass of wine every night, and I look forward to that every day. Yeah. 

Deonna:

No, it's, I mean, you have to have something like that. Oh, yeah. And, and sometimes your kids can be involved, but I do think it's good for parents to be able to step away at some point every day and do something they're looking forward to. And then also, for, for like the week too. Have something you're looking forward to in the week. And that might be, it doesn't have to be something big, like you can go to the ice cream place that you love, or like we went to, Howdy’s the other day. Which I will tell you, hires Disabled people, which I really like. Yes, yes, yes. I didn't know that till we went in there. Oh yeah. That's their whole thing… is that's their whole thing. Yeah. It's so cool. But if you, if you go somewhere like to the ice cream place or I mean whatever, we'll kind of get into some ideas maybe here in a minute, but just have stuff to look forward to and your kids will love that.

But yeah, parents need to have, I mean, sometimes I'll go eat lunch with a friend and it's amazing how knowing I get to go eat lunch with this person on Thursday can just make the Monday, Tuesday, Wednesday mm-hmm ..Feel pretty good because you are thinking about that. So yeah.

Rhandyl:

You have something to look forward to. I totally agree. Yeah. And I feel like  I constantly have to remind myself of that. You know, I feel like a lot of us in our situation, we prioritize our caregiving, obviously, over everything else, and we forget that we need to take time for ourselves, and we do need to consciously plan something. Yeah. ..on at least a weekly basis that we love. Some, some people aren’t social butterflies. Some people that could just be going to a movie theater and watching a movie by yourself? I mean, just there's so many…the list can go on..

Deonna:

Yeah, I do that all the time. Yeah. That's awesome. I know. It's, I, it used to be like embarrassing, but now I just get the, I, I basically go get like a huge Chick-fil-A meal, sneak it in, and just like go watch some girl show that no one's gonna wanna go see with me.

Rhandyl:

Uhhuh. Yeah, That’s funny. So something else you can do as a family-just plan socialization, play dates. I know for example, like Remi, she, like Allie, she's going to be sad that school is out. And so we, it's been, I guess it's been three summers ago, after Remi started going to school, and we realized how important and essential socialization was for her. I tried for months actually to try to find a Parents Day Out Program that would accept her and her private duty nurse that would be attending. Right? And it was my first big realization of how non-inclusive that the world is. I feel, I mean, which I knew…

Deonna:

..and how like intimidated they are by anybody that's even remotely different than them.

Rhandyl:

Exactly, and so it was very eye-opening and disheartening cause I started the search in like February, and we just kept getting turned down. I think it was like, oh, they were scared. They like that they were gonna be liable even though I explained to them, you know, that she would be coming with a nurse, we would never send her there by herself. We just got a lot of no, no nos. 

And then It was just a crazy off the wall phone call that I got, a phone call from this parents day out program through this church. They called me and they were like, we were just calling to confirm Remington's, summer PDO. And I'm like, wait, who? What? Who are you? What is this? And I had filled out some online registration form while, in that whole, those months of doing that and just like filled it out and sent it in and never thought about it again, and Right. ..just had chalked up parents day out was just not gonna happen for her. Yeah, given up and they… I explained everything. I was like, okay, wait, well, before, before I say yes, this is the situation. And they were like, let me tell you everything. Oh yes, we've had disabled kids come with their nurse and I was like, what? You know? Yeah. I was so, so excited. So she's been going to that parents day out. It's twice a week, gor the past three summers. This is her, probably her last summer to get to go, cuz she's gonna age out. Right? But she's gonna go to that. So, you know, if you can find somewhere like that, that's a, a tip that if your kiddo is definitely into socialization and you feel comfortable with that, and you find somewhere that will accept them, then I think it's great.

And even if it's just play dates with, you know, other kiddos, your friends kids or Yeah. Even  the disabled community where you're at. It's obviously, that's impossible to do on a weekly basis. We all know that takes a lot of planning, but just trying to plan a play date of some sort,  that even if it's at your house, because Yeah, you know, it's hard to get out sometimes and go do those things, so even if it's just at your house.

Deonna:

Yeah, like I said, I think last week, but you know, when Allie has somebody that she wants to play with, they're probably typically gonna have to come over here, but mm-hmm. It's okay, and we're just gonna get snack orders from all of her friends and we're gonna make our house the fun, you know, house with the snacks. So, but it's been good and it's been such a great thing for Allie's mental health to have a kid in the house playing with her, and luckily we have some that live just two houses down. Awesome. But it's also been cool for me as a mom because I never, I, I hadn't seen that in so long, a kid playing with Allie. Yeah. So it was good for me too.

So yeah, our next idea is just to kind of do something like a Yes Day, and if you don't know what that is, there's a movie on Netflix that sort of explains what a Yes Day is, but it's kind of where a few days before you plan out.. the kids can kind of ask for whatever they want within reason, you know, to fit your budget. Yeah. But yeah, we had to kind of lay that out for.. pump the breaks..my kids, Yeah, they were like, let's go to Disney. We're like, no, no, no, that’s not what we were saying. But but yeah, you can do a Yes Day if your kid is able to, and they can work with the siblings, and we let them kind of decide what they wanted to do. And we did one, I think last summer, maybe the summer before actually. But I mean, we went rollerblading at Texas Tech, which is the big college here, and we went and got ice cream, and we went and ate at our college, outside. I mean, it was just really simple, basic stuff they wanted to do, but it was really fun. And so and we even like documented it and shared it on Instagram and it was just, I love that. A fun day. I mean, you know, and it was an all day Saturday and we let my son also pick what he wanted to do. Mm-hmm. ..who’s not disabled. But yeah, it was a good thing. But, and then we were talking to you because, you know, Remi can't technically Exactly. I was gonna say something, do this. 

Rhandyl:

Yeah. Even kids that are non-verbal, we know, the caregivers, know what their favorite things are, so we do days like, you know, similarly. So, you know, probably a Yes Day for Remi would be the majority of the day watching all of her favorite movies. Because you mentioned screen time, we do limit it somewhat because.. Yeah, she  would be completely happy just, 24/7, literally just watching. Yeah. Yeah.  So we would, we always like to do movie day, whenever the whole family's home and my husband's off work and I'm off work, you know, weekends  have kind of a, a movie day, and then we would also, I would say she loves water play.

We just do like a little waiting pool. Mm-hmm. And She loves just playing in that and then going for a walk in our little neighborhood. Things like that that you don't even have to leave the house for, honestly. Yeah, you don't, we…

Deonna:

You can do this stuff for free. Like it's Exactly, yeah. It's not supposed to cost you like a thousand dollars to do a one day thing.

Rhandyl:

But there's all sorts. I mean, just everyone knows their kiddo. And so, I think that's essential just to make that day all about your kids. Yeah. And well, and it's good. ..makes them feel special. 

Deonna:

It's good too, because we talked about the siblings sometimes. Mm-hmm. Of the disabled kids are like, “cool, no one thinks about me ever.” And so it's good for them to kind of get to have a say in that and help pick out stuff they wanna do. So, yeah. 

Rhandyl:

Yeah. And finding places wherever you live that are inclusive. You can find places that provide inclusion for disabled kids. We live in Lubbock, Deonna and I, and there is a new place being built. It's not open yet, but it looks so exciting. It's called Milestones and it's going to be basically this huge playground in a sense, but it's kinda, yeah. Yeah. It's like an indoor, and it's going to be wheelchair accessible/handicap accessible. It's gonna be awesome. And then there's also.. I'm excited about that. Yeah. …there’s also places in town that, that are low sensory, play areas for kids that have a lot of sensory issues. And so hopefully there’s somewhere that you can find that you can take your kids that they are able to participate in some sort of activity, along with their siblings or friends. And so..

Deonna:

Well, and it's good to call ahead of, like, just call a place ahead of time and ask.. Oh yeah.

..them like, we we went to Main Event recently and I called them, which Allie doesn't get nervous about like the loud, she kind of does, but not in the way some kids do. But you know, we kind of called ahead because I wasn't sure if they'll even allowed the wheelchairs out on the floor of the bowling alleys. I mean, those are things that you just don't think about and mm-hmm. So, you know, just calling ahead and setting them up too for success by being like, we're gonna come in here and what can you do for us or help us out. And most people are pretty cool. And even like me and me and my husband went to Lubbock Christian University, and they are a local college and they do a camp that's like a recreational camp. And I called them before because my son's gone to that camp, but I didn't know if Allie, if it would make sense, you know? And so I just called ahead and they, they know now that they're gonna have a kid in a wheelchair on that week, and they said they're gonna work hard to come up with ways to include her.

So it's just That's awesome. Just calling ahead… Yeah. …sometimes is all it takes; and then they're prepared, because you can't really get that mad at some places if you haven't called them and at least, you know, try to set them up for success because that's not their typical customer. Exactly. So. Well, and I know a lot of most will help.

Yeah, they will. I know a lot of cities, unfortunately we don't have a zoo, but most zoos are handicapped accessible. Yeah. And those are fun  places. Houston Zoo does pretty good at that because um, You know, when you're in a…We’ve been to that one too. …kind of down low and so she could see most of the animals, but whereas, like the Fort Worth zoo, she couldn't see the animals as well. Oh. And so, you know, there sometimes you just have to try stuff and realize, okay, that was not great. But..

Rhandyl:

I guess we've only done the Houston Zoo. 

Deonna:

Yeah. It's, it's actually pretty good. Mm-hmm.  So, yeah, I think calling ahead is always a good idea because you never know. 

Rhandyl:

You don't wanna just, I mean, it's a lot of work just to get somewhere and yeah, the last thing you wanna do is get somewhere and then either you can't even get in the door because  they're not handicapped accessible, or you get there and there's literally nothing for your kid to do. So, it's definitely smart. 

Deonna:

Well, and research, you have to research the heck out of every place you're going when your kid's disabled because you don't know. Like me and my daughter went to this place that was like a fun, immersive art place in Houston called Seismique and I didn't call ahead and I thought, oh, shoot, what are we gonna be walking into? And it ended up being really fun and great, but if you had sensory issues where loud sounds or bright flashing lights, like that would not be your place. And so I do think calling ahead is smart because for us it it, we lucked out and it was okay, but if she had not liked some of that, it could have been a disaster. 

Rhandyl:

Oh yeah. It's all kid specific. So you know what triggers your kid, what Yeah. You know, what they can handle and what they can't. So yeah, just like Deonna said, just being prepared, calling ahead. It's always a good idea. 

Deonna:

Yeah. And a tip for this is for moms and dads, and this is really for anybody. Yeah. Whether you have a disabled kid or not, but Social media is a fun thing. I love it. It's a lot of fun. It's, I, it's something I enjoy, but… You need to stay off social media so much, if you're starting to, if, if other people's trips or experiences are starting to make you feel jealous and resentment and there's always gonna be jealousy with being a parent of a disabled kid, you're always gonna wish that things maybe were a little different. And you know, that’s something I can admit. I don't care. I mean, there's times where I look at trips other people are taking and I'm like, oh man, I used to be able to do that, or I wish I could do that. But if you're starting to get angry with your friends because they are getting to do X, Y, and Z and you can't do that, it usually comes from social media because people put out there, their best representation of what they want you to think their life is like, not what..of course…it’s actually like. And so it's, it's hard to see that sometimes. And so I, I hope I do this, this summer. It's self-control. But you know, staying off definitely helps us not feel bad about Yeah. ..our life, you know?

Rhandyl:

The summertime definitely it increases those triggers. Yeah, for sure. Because there are so many families going on all these awesome trips and posting them. Yeah. And we just see that more, we see more of the typical family life experience during the summertime. Yeah. And I think, I think it, it is hard and  like Deonna said, just just having to self-control, and just staying off even temporarily blocking certain pages or Yeah. ..people that you're constantly being triggered by because there's nothing you can do. 

Deonna:

Yeah, you don’t have to unfollow somebody. Right. You know, you can just like, yeah. I don't know how you do it, but I mean, I've done it before where you just silence their account for three months ..Yes. ..or something. Exactly. Yeah. So, Yeah, and it's hard. I mean, people don't realize what triggers us. It's like little, dumb things. I mean, oh yeah, I, I see people playing on a playground and it just upsets me because I'm like, Allie can't even go down a slide. I mean, she told me, can I try to go down a slide this year? And I'm like, I. Yeah. And I mean, it's possible, like I've seen you going down a slide with your kid with the ambu bag right there, which made me laugh. Mm-hmm. Because that is basically what we would have to do also for sure. But uh, or have this really, really long like ventilator circuit mm-hmm. Where she can go up to the top.

I don't even know how that would work, but, you know, if she wants to try it, we can make it work. But, seeing kids in swimming pools is supper triggering

Rhandyl:

But it’s a lot of work. It’s a lot of work..It’s a whole man team, like multiple people team to do things like that. 

Deonna:

Yeah. It would take at least two adults to mm-hmm. Let Allie go down a slide and she'll probably be like, “okay, that was dumb and not fun, let's move on.” But you know, we'll try it if she wants to, but yeah, it’s… I do think that people have no idea how seeing, I mean even seeing kids in a swimming pool or something like that, I'm just like, oh man, like the man hours it would take to get Allie in the pool.

It's crazy. So yeah, so we kind of. We just want y'all to think about that. And if you do wanna go on a trip don't feel like you have to go on a trip in May, in June, in July, right before school. You don't have to do these things. Like you can pick one trip. It doesn't have to be a big trip. You don't, we don't all have to go to Disney. It just doesn't have to be that way. Right. And like our trip is we go to my parents' cabin and we, you know, last summer when we went and Allie’s ventilator went out and scared the heck out of all of us. But this year we're more prepared, but it’s, you know, that's our one trip we're gonna go on probably, and then I'm gonna take my kids to my hometown maybe once, and that's gonna be it. And that's okay. You don't have to do these big, you know, international trips.

Rhandyl:

We usually just do one, Yeah, we usually just do one big, I wouldn't even say big, but it's usually like one a little bit longer than a long weekend trip. Yeah. And it's never; we actually don't usually ever do one in the summer. It's usually in the fall or winter. Yeah. And then we, of course, we go to our hometown multiple times a year. Right. I would say like probably three to four times a year we make the trip, and it's like a three hour trip. The whole family goes and, I mean, that’s, it's the same amount of planning and packing to go on a three hour trip as it is to drive a 10 hour trip. Yeah. So it's not really any different other than where you're going, what you're gonna be doing, but the preparation is still the same. It’s a lot of work.

Deonna:

Yeah. And so like if we were gunna go somewhere overnight versus 10 days, same thing. It's the same packing list. It's insane. Yeah, it's the same.

Rhandyl:

Yeah. And so sometimes day trips are, are easier. Like if we're just gonna go to like a cousin's birthday party Yeah. An hour or so away. Even three hours away. Honestly, a day trip's easier than.. Yeah, for sure. ..trying to stay overnight, because that's a whole nother, that's a whole nother mm-hmm. Monster. But for most of us, it's impossible to go on these “keeping up with the Joneses”  it's just, it's not even possible.  

But there's really cool places. I know at least in here in Texas there's a place called Morgan's Wonderland. It's in San Antonio, Texas, and it is an amusement park that is all handicap accessible. They have um, Carousels and I mean, you name it, they have it and you just wheel the wheelchair on the ride and yeah, it is so awesome. We have not been and you guys haven't been either. Okay. No. Yeah, so we actually had talked to, Deonna and I talked, we really would love to try to plan plan going to Morgan's Wonderland at some point, probably a little bit cooler time than summer, cuz I believe most of it is outdoors. So yeah.

But I just recently discovered just kind of browsing online this really awesome site. It's called Wheel The World and it's mostly for people that are wheelchair bound and it is amazing you search. It's not just here in the us it's  a worldwide, you search your destination, however long you're gonna plan to be there. And then there's other things that you can put in, things that you need accessible and things like that. And then, it just searches your destination and it will give you all sorts of details on, not even just  activities, but hotels that are, and oh, it's, it's so awesome. So that's cool. I'm definitely gonna look into that for future vacations. For sure. 

Deonna:

Well, and we, yeah. Like when we go to Houston, I'm, you know, weeks before Googling things that a person in a wheelchair can do in Houston, Texas and it's so funny because a lot of the stuff that comes up, like I've learned to think outside of the box and really think about like creative things we could go to, but a lot of the times it's more for adults and it's suggesting the super boring stuff and so, yeah, exactly. It's nice to know there's like a little bit better. 

Yeah, and it's funny, we talk about a lot of the big cities have playgrounds that are for..they do ..kids. I haven't done one in Houston yet, but there's, there's actually like a ton in Houston so…

Rhandyl:

Yeah, we keep talking about Houston because it's kind of like our second home. So we live in Lubbock, Texas and we, yeah, at least once a year make trips to Houston because both of our daughters have doctors that are there, and, of course, we're driving, you know, 8/9 hours to go to these doctor's appointments. So yeah, we try to make something, some activity or, or make it somewhat of a trip and not just, you know, a doctor's appointments, which they take up the majority of our visit time there, but, but we do try, we do the same thing. We try to find something that's inclusive while we're there to make it, you know, less of just a medical trip, you know?

Deonna:

So I think that's a good tip in itself is most of us are having to go to towns other than the town we live in to do the specialist appointments and things like that. So I mean, like we have Houston, which is a very cool town, but you know, when you're going to these larger cities, you can think of it as a vacation where you just so happen to also have to go see doctors. Mm-hmm. And we usually do the fun vacation stuff, like on the weekend and then try to plan the. Doctor's appointments and stuff for maybe like Monday, Tuesday. Mm-hmm. And so you get that vacation feeling and the kids get to go do fun stuff, but you know, you're also getting like your business stuff done also. So yeah, you can think of it that way.

But, the last thing we kind of wanna talk about is just parents get burned out. I mean, you're just parents of just typical kids get burned out. You're with them all the time. You know, kids can drive you nuts. It's just the way it is. Love them to death, but yeah. And so…

Rhandyl:

Yeah, lets be honest, we need a break.

Deonna:

we're, we're being honest here. We're not gonna be like, oh, I love my kids. I never wanna be separated from 'em one day of my life. That's not me. And so.. me neither. Um, I love breaks, but, I you know, I'll get out and like go eat lunch with somebody or I'll just tell, and I have nursing who I could have 24/7, you’re the same. Same. They're not everybody has that. I would say like the majority of parents of disabled kids…do not.. do not have you, you gotta be in, you know, certain categories for that. But you know, we coordinate with our nurses and all these other people like my parents or whatever, and we'll plan.

Rhandyl:

The Village. Mm-hmm. Yeah. 

Deonna:

There’s a lot of people that we.. Oh, yeah…include in these things. And you know, like once a year I go with my friend Nina on a vacation and it's like a long weekend vacation. It's not like I'm gone for 14 days or anything crazy like that, but, I mean, I would go for 14 days probably if I could make it happen, but I can’t. Yeah. But don't get me wrong, but you know, you just like get out of town and go somewhere else and don't be calling your husband 24/7 checking on your kids. Like, let your brain check out from that and I mean, the thing is though too, and I don't think this is very standard with a lot of parents, but I wish it was, but you know, I can literally walk out the door and be like, bye to my husband and I'm gone and I don't have to give him any advice, he knows how to do every single thing I know how to do. And I know moms it, that’s just not always, even with parents of typical kids. Right. You know, hopefully the dad's. It's just, you never know. But yeah, I can walk out the door with Dane, you know, he's got the kids and I feel a hundred percent good in their care and everything. And our parents will come in and help or, you know, like the nurses will be there to help out as much as they can. But, I get out of town and I just shut my brain off from the like, I don't know the right word, but I mean it's stress, you know?

Rhandyl:

Just the routine.  Yeah, just your day, your normal Daily you get away. Yeah. You get a break 

Deonna:

..and it doesn't, I mean, we like fly out to different locations in the US but it doesn't even have to be that you can get your friends that live in the same town as you and just go do like a little staycation for two nights and just like have fun in your own town. Yeah. Or go into the town next door so that you are.. I feel like that might be a better advice because..

Rhandyl:

Well when you first start out, if you've never done that, if you've never gone away from your kid before. It's like baby steps. Baby steps, for sure. Do a staycation and then yeah, take the bigger steps later. But like you mentioned with your husband you can walk out the door and feel comfortable, like you don't have any worries, and I think that for a lot of people um, in our situation, that might not be the case, I don't think.

But I wanna say, I wanna say, you know, on here that it is, It is very important for you whether you have a spouse or not, to have, either a family member, someone, a best friend, someone yeah, that you trust that will learn and be able to help take care of your child. Someone that you can either train or someone that you know, that you have that person that can watch your, your kiddo, right? ..kiddos, and just so that you can take a break, because if you don't have that; it is so crucial. And so those of you that feel like you don't have someone like that, there is someone, there’s..

Deonna:

..like single moms, there’s so, yeah, exactly…there’s so many single moms in these groups that we're a part of, and I'm just like, wow and..

Rhandyl:

There is, there is someone though in your life. Yeah.  There's a lot of us. I mean, I'm a micromanager, I will say like you know, we are lucky, if you will.. Yeah. ..to have nurses  that we can trust. For sure.  But having someone that you can essentially leave for the night. yeah. Even if it,  everyone needs that, and so I just encourage you guys to think on that. Those of you that don't feel like you have that, there is someone there for you. 

Deonna:

Well, and even like the date night thing, I, I kind of hate it when people are like, oh, you guys don't have a date night? I'm like, no, we don’t. I, there's, it's really hard to do something like that, but even me and my husband like, we'll plan, you know, to meet for lunch or something somewhere, and it doesn't have to be in the mold that all your friends, you know, are living like you can do things differently or meet for breakfast or do, you know, just do something different.

But find those moments where you can step away from the stress. Because if you don't, it's just, it's going to eat you alive, you know? 

Rhandyl:

Yeah, and there's, so we have this parent group Raising Disabled Deonna and I started this private parent group on Facebook and they kind of, we've a lot of these ideas we bounced back and forth with the group, but one of the members mentioned respite services. All states/most states have something similar that it is state funded. A lot of kids will qualify for certain amount of hours a week for these respite services, and that's what it is for, is to be that person that can help you with your child so..

Deonna:

And your friends and family can go get hired on. Mm-hmm. And so it can be somebody that you already trust anyways. Yeah. You know, so, 

Rhandyl:

And they can get paid for caring for your kid.

Deonna:

And by somebody else, not you. So that's like awesome. 

Rhandyl:

Exactly and actually some states have like, the parents can actually yeah…be employed as respite for their own kids. Yeah, they can. Which is awesome. Yeah, because I mean, it's more than just it sometimes it, it's, it is a job. It's more than your typical parent situation, so, yeah. Yeah. 

Deonna:

So we hope some of these tips will hit home with you guys. I know last summer we did this thing called ABC summer and it was really fun. Like, we basically wrote this entire bucket list of things that we wanted to do from A to Z - like the letter, I would be for ice cream and we took pictures of us doing all these things and it was really fun and it made this great memory. 

And so we hope that you guys can make tons of great memories. We hope that this episode encouraged you to have ideas for how to make it fun, and we just hope you guys have a really safe and happy summer.