Accessible Adventures with Kristy Cook

Rhandyl:

Hey y'all, we're back, and Deonna and I have had a busy few weeks. So, Deonna, what have you guys been up to lately? 

Deonna:

Oh my gosh, it's like every time we do this now, I'm like, what have we been up to, and then I have to go look on my phone, and then I'm thinking, oh my gosh, we did all of that in the last two weeks, it's crazy, but. 

The big things we did is we ran to Houston last Sunday and we came back Tuesday, which Houston for us is about a 10 hour drive. And so, it was just crazy, we went Sunday. We were getting established with a new doctor over there that we have never used before. And so we had to just go do all these tests and do stuff like that to get in with him.

So we did that Monday morning. And then we went and had some fun. Cole went rock climbing, that’s like his favorite thing to do when we go to Houston is try out different indoor rock climbing places. And so, oh yeah, there's some fun places. And so he went and did that and we ate at our favorite restaurant, Mia's table. Have you ever ate there in Houston? 

Rhandyl:

No, we have a list of our favorites, but that's not one of them. 

Deonna:

Mia's table is the best. Okay. We have this jalapeño gravy for chicken, and it is so good. But, yeah, we eat there all the time. 

Rhandyl:

El Tiempo and Good Company Seafood, those are our two go-to’s when we go.

Deonna:

We'll have to try those places. 

Rhandyl

Houston has the best food. Like, the best food. They do have a lot. Yeah. If there’s one thing I miss about Houston, it’s the food. 

Deonna:

Yeah, we have a lot of options. We did another place called Whiskey Cake and they had a really good cake. I'm sitting there in the hotel room eating it and I'm just like, I'm going to be sick tomorrow and  it's worth it. I don't care. But yeah, we went and did that and then we came back Tuesday. So it just was. Really fast. Usually we're in Houston longer, but this one was just kind of a weird circumstance, but yeah..

Rhandyl:

So just to be clear, 10 hours one way. So literally take an entire day just to get there, 

Deonna:

but yeah, you have to take breaks. And I mean, it's, we go pretty fast and furious for how. Difficult things can be with Allie and everything, but yeah, it's good. We made it, but me and Allie, while they were rock climbing, me and Allie went and had a, what she calls nineties mall day. So we went to the mall and went to the candy store and she just bought a bunch of silly things. So that's so fun. Yeah, 20 can go pretty far when you're that age. So she had fun, but yeah, we did that. 

And so that was good, we went to Master Follies also last week and that is this LCU, that's where we went to college. It's just this fun homecoming show where all the different  fraternities and sororities do shows and I used to do that when I was there and so now I take my kids to go see it and so they think that's a lot of fun. And so yeah, that's a really neat little Lubbock thing that you can go do. So it's a lot of fun, but yeah..

Rhandyl:

We never done that and we should, but I've heard from so many people how cool it is.

Deonna:

Oh yeah, it's silly, but it's fun. But we did that and it was the anniversary of my brother's death.

It was. Two years ago this past week. And so it just put a, like a dark cloud over this past week. You just, it's one of those deals. It's like anniversaries of anything bad. You just, you don't think it's going to affect you. You're like, okay, it's just another day of the week, whatever but it does. It just sneaks up on you, but we made it work, but it's just even with my kids. It affects us all. So that was kind of tough, but I'm sure we, we did a lot of basketball. My son's playing basketball and that is the most hilarious chaotic situation ever.

Rhandyl:

Junior high boys basketball, that’s…

Deonna:

Oh, yeah. Cole's crazy. It's super fun to watch. There's a lot of air balls and they take these crazy shots. They take shots that college players wouldn't even take and they just airball it. And you're like, yes, but Cole's doing pretty good because he's never played before. So he's doing pretty good for that. 

But, and then our, in our house with medical drama, she, Allie has had some fun moments this week. She had blood pressure that was like 205 over 170 and I'm just like, what the heck? And so that was kind of a stressful moment, but that happened in the last couple of weeks and then another time this week, now she has.. all my parents who have kids with trachs. She has not had granulation, which is just for people who don't know what that is, it's like just a pretty bad, like skin irritation right where her trach goes into her neck, you know? Yeah, the stoma. And so, she used to get it a lot when she initially got the trach, but now it is back with a vengeance.

And when those things happen, it just, it's like a setback and you're just thinking, oh man, this, I don't want this to bust open, get infected, all, I mean, all the things. And so we're taking care of that and trying to help it. So yeah, not fun, but no, that's kind of what my two weeks have been like. 

And we also went to a accessible playground the other day and that was really fun. I think me and you are going to share videos of our kids on these types of playgrounds, but it was just cool. I mean, she has not been on a playground like that where she could roll up onto a piece of equipment and get to experience it. And so it was really good. So yeah. 

Rhandyl and Deonna:

We need more of them. For sure. Yeah. Well, like every, I just don't understand, but yeah, it's just, it's going to take people like us to keep advocating and bugging the heck out of people. But yeah. Yeah. So that was our past two weeks. What'd y'all do?  

Rhandyl:

We also had a busy couple of weeks. We just, over this last weekend we went on a family ski trip with my side of the family. It was my dad's 60th birthday, and so myself and my siblings and all of our family, we got a cabin up there. And my dad's loved to ski ever since he was young and so we grew up skiing and we went to Red River, that we talked about last episode and so we actually went there. But we also talked about Red River, New Mexico is not accessible.

Deonna:

Yeah, especially in the snow. No, but I've had this in my head the whole time. I was like, okay, I want to take the kids snow tubing, which is what they do after the lifts close. Yeah. They open up the bunny slope and they do snow tubing. And yeah, so we get the kids all dressed and loaded up in the car. So a toddler and Remi so it's a lot. We get there and just to discover that my son's not tall enough to do the tubing. And then they're telling me that parents can't ride on the tube with their kid. So the people at the ticket booth were like hands in the air- “I don't know, you know”, when I mentioned disabled kid, can she and I ride? They're like, yeah, you need to go ask them. And so I go ask them, which is the people, you know, in charge of the tubing.  And s  I go ask this girl and she's like, I'm going to need to radio my boss. And I'm like, okay. And she  walks away and goes into this little barn and is on the radio. And then she comes back and she's like, we're going to have to take this up to so and so. And I'm like, okay. 

At this point, you know, it's been 10,15 minutes. Remi probably could care less. It was all me. So anyway, we just went back to the cabin and they had just piled up snow that they had gotten out of the road right by our cabin and we just kind of built our own little sledding area, and we just went bought this little plastic sled and we just used that. And I got Remi on there with me, and she hated it, and I got over myself, yeah, yeah. She literally turned blue, and we had to bag her after that video was over. 

Deonna:

Oh no, are you serious? I kind of believe it after watching the video, because she's not having it. 

Rhandyl:

Yeah. So, anyway, that was all mom's thing. I got that out of my system, and Remi, I know now, like, she really could care less about the snow. She hates snow. I know. I know.  Last year we got her on carnival rides with me, and she loved it. But she didn't want to go sliding in the snow. You just never know with her. So, Yeah. 

Deonna:

And it is hard because as parents of disabled kids, we want our kids to have all these experiences that we feel like they're missing out on or something. You're gonna, you're gonna do this. Yeah, so we forced them to do things and I, that's what we did with the pool last year. I like, forced her to try it. She did not like it. And I was like, okay, we're not doing this ever again. So whatever. Yeah. But yeah. Did you have fun in Red River though? 

Rhandyl:

Yeah. Yeah. My son loved it. I got to ski one day. I had planned on skiing two, but I ended up getting sick. I ate something that did not settle well with my gut. And I was sick all night, one night and did not get to go.

Deonna:

That's the worst on vacation. 

Rhandyl:

Yeah, it was. And I, thankfully it wasn't anything contagious. But yeah, so I didn't get to ski the second day, like I had planned, but that was literally the only thing. I mean, besides the whole tubing thing, that was the only bad. And I wouldn't even call it bad. I'm like, I took one for the team. If that was the worst thing that could happen on the trip, then, you know, it's not that bad, but Remi did well. 

Deonna:

That's so funny. You're like the only bad thing that happened on the trip was my kid turned blue and I vomited all night long. But other than that, it was good. 

Rhandyl:

Totally fine. Yeah. Totally fine. But yeah.That's funny. I mean, compared to if you listened to the last episode. Other trips. Yeah. You know. You know. So if you haven't, you should go back and listen. Yeah. 

But Remi did well. She did need more respiratory support in the altitude the whole time we were there, but not much. So she did fine. 

And then, the other thing that's came about in the last couple of weeks is we finally hired a new day shift nurse. Yeah, I know it's been five months- we’ve only had one day shift nurse.

Deonna:

Five long months. 

Rhandyl:

Yes, so she's in the process of training and getting all the things sorted to be able to go to school with Remi and all of that. Oh yeah. And Remi actually had a fun clampdown episode today with a nurse. Oh shoot. She was training, and of course it scared her to death, and she was second guessing herself, like, she should have done this, or that, and, so, Yeah, that's kind of hard the first few.

But I, yeah, but I was like, I’m gonna just tell you, I'm glad that you saw it, and I'm glad that you were scared, because it should scare you. If you sat there and acted like it was no big deal, Yeah. Bye! That shows you right there, that's the reason we need you. She could never go to school without a nurse, or, you know, it's just you saw it. And I was like, and now, you know. You’ve seen it happen, you know, the scenario, this is what you'll do next time. And yeah, that's just the way it is. But she seems wonderful and so we're excited about that. 

But yeah, so hopefully today's episode you guys will enjoy. We have on a really cool guest-they do all sorts of awesome traveling and so many tips about inclusive travel and things like that. So I hope you guys enjoy. ​

Rhandyl:

 Hey y'all! Today we have Kristy Cook on with us and Kristy's son is disabled and her and her family, they do not let that hold them back from extracurricular activities and big trips. We follow her on social media and they are very inspirational. They have so much experience with inclusive travel. We hope to learn so much from you today, Kristy. I'm excited. 

Deonna:

So, first of all, Kristy, we just want you to tell us about yourself, your family, where you live. 

Kristy:

Okay, so, my name is Kristy and our family is on social media at Accessible Adventures. We live currently in Colorado. I guess that's where we can start. So we relocated from Florida to Colorado about three years ago for better medical care for our son. We were not adventuring a whole ton back then. My husband worked pretty crazy hours and I was home with my son by myself.

Moving here we were able to be paid caregivers for our child and we can do that while we travel. So it's given us a lot of freedom and flexibility to be able to explore more things. And I have support here now. 

Deonna:

That's awesome. Awesome. Yeah.  So I knew that about Colorado because Texas doesn't do that. And I think that's such a cool thing that Colorado does. So many parents could benefit from that. So that's awesome that you moved there for that reason. That's cool.

Rhandyl:

What a great move. So can you give us a short summary about your son, Robbie, and his diagnosis?

Kristy:

Yeah, so Robbie is nine years old and he has LGS (Lennox-Gastaut Syndrome). So for those of you who are not familiar, it's a rare form of epilepsy. And he has daily seizures, a chaotic background activity, and pretty massive global delays. His cognition is that of, honestly, about six month old infant. But it doesn't stop him from getting into everything and enjoying adventure and wanting thrills. He doesn't really have fear so that can be scary. It's honestly more scary at home than when you're out and about, because he's like in a chair, in his equipment. At home, he's let me climb over the back of that couch, oh my gosh. Always into everything. 

So it's been nine years now since he started having seizures. He had one at six months old. It lasted for an hour. They could not get him out of it. Yeah. He was stuck in status, multiple rescue meds and it just kept getting worse. They did a ton of testing and they said, it was probably just a febrile seizure. He was at a hundred point five. And we were like, Oh, that's suspicious. But okay. So they sent him home on Keppra. That's like the starting med for everyone.

And at nine months, three months later, he had a seizure. We called the ambulance. And he just kept having them. And they were coming in clusters he had infantile spasms. So our local hospital didn't recognize what it was. They sent us home. We had to call 9 1 1 again. He was turning blue again. He wasn't breathing.

The fire chief showed up. Now he's been to my house three times in three months. He walked in and said, what are you doing here? We were like, they sent us home and this is in the beginning of your journey. You don't know how to advocate. You don't know how to say no. You don't know that there are specialists, right? A doctor is a doctor to me. 

So it was a real uphill climb. We never got control of the infantile spasms. So he had those for years, outgrew those, went into tonic seizures and drop seizures. And then they've just progressed as he's gotten older but never with full control. 

Deonna:

How old is he now? Did you already tell us? 

Kristy:

Yeah, he's nine. He's nine. Okay. So, oh man. Yeah. I don't know that much about seizures. 

Rhandyl:

Yeah, my daughter just recently within the last year got diagnosed with hypoxic seizures. She now has learned to throw herself into seizure when she turns blue. So that's been fun. But I do have, in my field of work, I have worked with similar cases like as Robbie. Kiddos that have pretty severe drop seizures. 

But you said in the beginning, you guys didn't have a lot of specialists and things like that now has the move helped with that or did you guys get help in Florida, or how old was he whenever you guys finally were able to get some answers? 

So we got his diagnosis that day, but it took, so my neighbors actually saw the ambulance for the second time, and she sent me a message and was like, what is going on over there? Yeah. I'm like, is everyone okay? And I was like, no. 

So when I told her, because she had known that Robbie had a seizure a few months before she connected me with just a local family. Their daughter had epilepsy and was like, maybe he can help you. I don't know. Maybe he can help. I work with him, he’s great. And there's like a little group of epilepsy parents that we got connected through her and they were like, you need an epileptologist. And I was like, what's that? And they were like, a neurologist deals with everything brain and epileptologist deals with only seizures and epilepsy. And I was like, okay, cool. So when we went there, we found somebody and I was talking to the ER doctor in our little small town. And I said, I really, I don't want to go home. I don't know what to do. And he was like, okay, well, I'm going to send you home unless you tell me you won't leave. And I was like, what? And he was like, you have to tell me you won't leave if you refuse to leave. Unless we transfer you, then that is what I will have to do. Yeah. And I was like oh, okay. Yeah.  I refuse to leave. 

Rhandyl:

Medical is so fun. Yeah. They have all these. 

Kristy:

But like the hoops and trying to figure that out and then like we had a neurologist and I'm like, but we have a neurologist and she saw the EEG and she should have seen it and she didn't. And I'm like, I have to fire doctors now. Yeah, you sure do. 

Rhandyl:

Yea, you learned how to advocate really quick. Yeah.  

Deonna:

It's a really hard part of your journey because at the beginning, like you said, you think all doctors are brilliant geniuses and then you realize very quickly that they're not all created equally and it's hard when you. Don't trust a doctor. I mean, they're supposed to be trusted, at all times I feel and so it's so hard when they miss something or mess up like oh, yeah 

Kristy:

We moved for better care because we got to a point three years ago where Robbie seizures were getting worse. We'd been through basically every local neurologist, epileptologist that was in Florida. The neurologist we were seeing was like, well, what do you want to try next? I'm like, why are you asking me? You're the doctor. I'm like, what do you mean? 

So, we moved and when we got here, the first appointment I went to, I met a pediatrician and she was just so wonderful. And it was just this random pediatrician, not like a care coordinated,  specialty pediatrician like I had in Florida cause we had someone that was really great.

And I was like, wow, she's so amazing and so supportive. This is so strange. And then we met the neurologist and she took such extensive notes that the second time we saw her is when I was really impressed because she was like, okay, so I know he's done this, and this and I was thinking of this drug versus this drug.

And instead of just saying, what do you think? She said, let me explain the pros and cons of both and  the science behind it. And she just is so informative and she lets us be a part of the decision, but she always knows the next step. Like we have a this is what we're doing and if this doesn't work, this is what we're doing, and if that doesn't work, this is what we're doing and she has it all noted out and like I left the office and I could just feel the weight just drop off of my shoulders I just started bawling and people are probably walking by my car like she just got the worst news ever, but it was the exact opposite. I was like, I feel like I finally am not alone in this.

Deonna:

Supportive pediatricians are everything, like me and Rhandyl, we use the same one. And yeah she really is like that. So I mean, it's huge when you have that person, cause everything goes through them. So yeah, you have to have that. It's huge. 

Rhandyl:

It's wonderful to have a doctor that's also a good advocate and you don't necessarily always have to continuously tell every specialist that you see a whole medical history for nine years. Like they have an idea. Because, your pediatrician is good at transferring and referring, and it just helps so much and gives you peace of mind to know that there is a next step and that you're not having to make all of your son's medical decisions on your own because that's,  

Kristy:

It's heavy.

Deonna:

It's so heavy. Yeah. So, what stuck out to me about your story, too, is he has the seizures every day. Are they major every day? Are they smaller? Cause my child doesn't have seizures, so I'm learning all this, but what does that look like for you, for him, on a daily basis, having that?

Kristy:

Yeah. So, it ebbs and flows. Sometimes they get worse and we go through a downward spiral, and when we adjust meds, it's really hard. We're actually going through some of that right now. So our super adventurous family has gone almost nowhere in two months. Well, it's just what it is.

We always filter things through a lens of, is it safe to travel right now? Is it safe to be out of cell phone service right now? And when we're switching medications we don't feel that it is. So we're moving some things around right now. Sometimes when we get better control, he has very mild seizures. Maybe once every day or two and then things get better right now he's probably having two a day and they're a little more intense than that, intense enough that I don't want to be in the middle of nowhere right now until we get that balance back out. And everyone has a different opinion, right, on what they feel is safe and what their child's baseline is.

I can tell with my son, if like, when I swipe his VNS magnet, he has a vagus nerve simulator. So there's a machine inside of his chest and it wires up to his vagus nerve. And if he's seizing and I swipe a magnet, they give you a magnet and you swipe it over it and it pulls them out of a seizure. So if I can do that and he's right out of it and there's no delay in that and like I don't see him turning color or struggling to breathe or holding breath, then I'm like, okay, we're good. If this is our consistent every day that we're dealing with right now it's like we're swiping, he's not coming right out or I can see him breath holding when he's seizing, those are times when we're like we're going to stay local now. We might still do things around town and still try to get out. But we're not going to go to a national park that's in the middle of nowhere. If you know that's where he is right now. 

Rhandyl:

Right. Yeah, for sure. I remember the first time a nurse gave me one of my patients magnets and they're like, here's this magnet. And I'm like, okay, what is this? But anyway it is pretty crazy how it will help. It does I've witnessed it helping them snap them out of it. It's pretty, pretty amazing. I remember asking whenever we got this diagnosis with my daughter, would that help? And they're like, no, because this is just totally different ballpark.

Deonna:

I think my daughter's vagus nerve is  totally shot.That was like part of the reason she can't breathe on her own at this point. So I know I'm like can we get a pacer? Yeah, no, nothing. 

But that is cool, technology's crazy. So we all live each other's lives. We know what this is like. And like when Rhandyl asked me to do this podcast, I was like, I don't know if I can add another component to my life right now. It's just so busy from the second you wake up till you go to bed, but we've done this. And you also have this thing that you've created Accessible Adventures, even though you probably absolutely do not have time to do this. You do it. And so it's so cool. And today I was just like scrolling your Instagram. I probably accidentally like stuff from  months ago. And you're like, okay, that's weird. But I wouldn't even notice. Yeah, I was just looking through and thinking like, oh my gosh, I want to do that. I want to do that. So what inspired you to start Accessible Adventures?

Kristy:

To be quite honest, when we first started, it was for kind of selfish reasons. We got Robbie's camper through Make A Wish. So we moved to Colorado. We met this new neurologist and she referred him to Make A Wish because he has these daily seizures that put him at a risk for SUDEP (Sudden unexpected death in epilepsy".

So we get his camper and I'm like, great, where do we go? And then, We started to realize I don't know if we travel, how to find things that are accessible. So I got on my personal Instagram and people were making reels, right? It's during COVID. It's when Instagram first started popping off and stuff. And I was like let me follow all these like full time RV families cause they travel all over. They've been everywhere and I just started messaging random people or leaving comments. They're like, hey, did you see anything that looks stroller or wheelchair friendly in that area? I would love to go there.

Like same way that you're scrolling through and you're like, wow, that's so cool. I would do the same thing, but be like, that's so cool. But could we do it? And sometimes they would say no. And sometimes they would say yes. And then we had some amazing people that would respond and be like- Oh yeah and if you really want to come to this area, here's a list of stuff that I think that your family could do. And we went on our first trip and it was this big road trip and it took us almost two weeks and we saw three different national parks and we got home and I was like, man, it took me months to plan this.

And I mapped it all out and I had all this stuff printed. So I knew everything we could do in each area. And not everyone has a type A personality like that to just sit up at night and plan out everything in that way. And I thought, man, what a shame that. It's just going to be us now because originally I started Accessible Adventures because when I would reach out to people from my Kristy Cook Instagram, they wouldn't always respond. And I was like, if I have a page and they could see-Oh, that's what she's trying to do. Maybe they'll respond to me. Right. 

Yeah. And then I was like, well, we'll just share some pictures. And then, it just. We randomly, I took a video of my husband carrying our, he was probably 60, 65 pounds at the time. He's carrying our son on his back in his kinder pack, and he was walking in front of a waterfall and I posted it and was like, this is my love language. No complaints, no hesitations. He never gets left behind. My husband's always there. And it went out to 10 million people on accident, not planning it.

And all of a sudden we had 10,000 followers and I was like, Oh my God, what do I do with these? I don't even know what I'm doing. And yeah, we started hearing from brands and I was like. I guess we could actually do this and maybe we could make a difference and yeah, we could blog and share these locations and get in touch and build a community because we can't be the only ones that still want to see things, even though our kids are out here.

Yeah. And the more that we started sharing in that aspect and inviting people along and “Hey, come join us, share where you've been” and the ins and outs of parenthood. Being a medical mom along with the travel. It just grew into something bigger. 

Deonna:

That's such a cool story. When I first found out that Allie was not getting well, I mean, this was our forever most likely. I just, I love traveling. I've been all over the world and it was just this feeling of, Oh my gosh, I'm never going anywhere ever again. And it was such a hard thing for me. Like my husband doesn't care about traveling as much as me.

But it was so hard. I thought my kid is never going to go to Europe. My kid is never gonna leave this country. And I don't know why, but that really upset me. And then now I'm realizing,  for the first year or a year and a half, we didn't get to go anywhere because she was just too, it's like what you were talking about earlier. She was too fragile. There was no way; it would have been stupid to take her anywhere. But now, even though it is still a little borderline stupid to take her anywhere, we do it because, and we haven't gone as many cool places as you. Like I'm looking at all your stuff and trying to figure out what we're going to do, but it is scary at first to step out with your disabled kid away from their hospitals and their DME companies and all, the list goes on and on. 

But I think it can be really good to see people like you or anyone, even people getting out in their community and doing fun things in their community. Your kid needs to see things and it takes a lot of planning and effort to make it happen, but you're doing some of that work for us. So yeah. Yeah. Thanks. That's good.  

Kristy:

I really hope that helps and I've had families that have sent me pictures and they're like, look, we made it and they'll send a picture of something that I posted in the past. And now we're working with tourism boards which is so cool because yeah, so.

We worked with Bryce Canyon Country, which is right outside of Bryce Canyon National Park. And they had us come in and go to the park and do everything accessible and then they set us up with here's all the other cool things that we think that you would enjoy that are inclusive, that are welcoming in the area and then we help them promote that. And then when people reach out. They're like, yeah, this family did it, so you can do it. That was something when I started planning, I didn't know, like I was reaching out to random influencers that were RV influencers. 

And then I started reaching out to tourism boards and you don't have to be on social media in any type of way to do that. Just any person. That's what they're there for, they will help you plan. So if you either, you can email them, you can DM them on social media. They have a phone number. You contact the local tourism board of where you're trying to go and say, these are our needs and these are our limitations. And I was wondering what in the area you think would be inclusive or accessible to my family and they will give you ideas. 

Rhandyl:

Oh, that is such a good thing to know. I would have never thought about that. That is such a good idea. 

Kristy:

They're so helpful. And some of them are like, Oh my gosh, I've never thought about that. I don't know. Right? 

Rhandyl:

Yeah, I was gonna say, I wonder, I was gonna ask, do you get that a lot? 

Kristy:

So sometimes they'll say that they don't know. And they will get with some different people and then get back to us. Yeah. And then some of them do know. And now that we're, I feel like we're just making this change, which is so exciting. Because when we work with tourism boards, we go do all this stuff and yeah, we share the content. And we share our real experience, but then in the back end, we give feedback like, “Hey, this was great, this was not great, and this is why you can make this better, and this is how this can change.” And if I go to your visitor center and I say, what restaurants are handicap accessible so that I can go out to eat with my son, you should have that on your map.

Yeah. That's so great. I need to know you, that how you have to have a legend and they're like, okay, cool. Yeah. A lot of them are revamping and having us come back. Oh, so cool. So they're putting in work and they're really taking that feedback. And I think that the tourism industry as a whole is really pushing to be more accessible now.

Rhandyl:

I'm so thankful. That's good. That's good. It is. Yeah. So what are some of your favorite places that you guys have been with Robbie? I know there's a lot. 

Kristy:

I know. So one of my favorites, and we've actually been twice, it's the one of the only places that we've been twice is Yellowstone. So Yellowstone is so accessible. Now, if your child does not like being in the car, this one is not for you because things are spread out, like from one side of the park.  

Rhandyl:

I've been there, but it's been a long time, not as a mom of a disabled child.  It's huge. Yeah. 

Kristy:

You can stay in quadrants, right? So some people will do that. They're like, we stay at a hotel here and then they go to a different area and stay somewhere. We just parked our RV on the West side and our son loves being in the car. He loves being in the truck. He likes the windows down, hands out, just yelling out the window. So it wasn't a problem for us. We would explore all day long. We saw tons of wildlife and there are boardwalks and sidewalks and accessible features everywhere. So much to see from your car.  

Deonna:

That's cool. Cause in my mind, Yellowstone is muddy and there's nowhere you can push a wheelchair. I've never been. That's somewhere that we want to go. So, it's nice to know you've already been.

Kristy:

You totally can. And not only that every national park, if you're thinking, should I go to a national park? You go to their website or just honestly, it's easier to find it. If you Google  Yellowstone accessibility, it'll pop up a link to it.They have an accessibility guide. Yellowstone in particular, they will give you a pamphlet. It's basically a folder. It's all printed out and it tells you where all the stairs are, where the sidewalks are and everything that is accessible to you. And you just get it from right as you pull in you get it.

And then for those of you who don't know you can get a free national park pass if you have a disability. It's called an access pass. 

Deonna:

I did know about that. Yeah. Yeah. And is it just for the kid that's disabled? No, it's your whole car. Really? Like the whole family can get in. I, yeah. Whole car. I've heard about that, but I thought it was just for one kid, so that's nice. 

Kristy:

So National Parks they charge by the car,  by the car load. Right. So as long as they're in the car with you, then you're good to go. And it's not just National Parks, like National Monuments, things like that are also covered. So the Grand Canyon is another one at the top of my list. I love the Grand Canyon. It is the most accessible national park. The entire rim is basically paved. So there's that there but right by Flagstaff, there's also  a bunch of smaller national monuments Wupatki, Tuzigoot, there's one that's a castle. Oh. Oh yeah. It's escaping me. Montezuma Castle. I do not remember. It's where it is. So. Yeah, they're all within a few hours, so we just stayed in the one place and would do little road trips and bebop around and it's all covered with your access pass.

And then they have a drive through zoo there where you actually drive through and the animals are next to your car, which again, so accessible. The window you put down in some areas, when you're with wolves and bears, obviously you put it up. But they're right next to your vehicle. So if you can be in a vehicle, you can experience it. And then there's. areas where you can walk out and that part was all real friendly. So there's just so much out there.

And I think that too many times people focus on what is not accessible, what they can't do as a family, and there is so much you can do. There's so much Bryce Canyon was another, it blew me away. I honestly didn't think it was going to be as accessible. We were talking to the tourism board. We ended up working with them. And when we got there, we were like, this is so amazing. They have this huge hike from one point to the other. It's all paved. You can see the hoodoos. And then locally they have a barn, It's called Ebeneezer's Barn and Grill, and it's basically a country music live show, and it's one of those things, and I use this as an example because I didn't think Robbie was going to be into it, but when they recommended it, I was like, if you want us to go, we'll go check it out. If it doesn't work, we'll just let you know. We got there and this child was all smiles and he was clapping his hands and dancing and they were singing live music and we got steak dinners and I was like, this is wonderful. And I think that  we let ourselves get held back so often by thinking this might not be the environment for my child.

Rhandyl:

Yeah, I've done that before and then it was proven wrong. Right, let them decide. Yeah, I know what you mean. Yeah. 

Kristy:

You have to go in with expectations, though, of knowing we might have to take turns sitting this out. Sometimes Robby falls asleep, I have this amazing accessible hike planned, I've been planning it for two months. We get there, he's passed out in the car and if I wake him up, he will have a seizure. So, the first time it happened, I swear I was gonna cry. I was like well, what do we do? I just, what do we do? And my husband was like, well, why don't you just take our daughter and just, you go, it's not a very long hike. It's like a mile, just go out and you enjoy it and then come back. And if it's really cool, I'll go. And if not, I'll do the next one. And I was like,  that is such a simple mature, responsible answer. I was going to cry, but that's a better plan and that's what I do.

Deonna:

Yeah. I think that's such a good point. And I do think too, like parents, cause I used to have very high expectations of everything before Allie became disabled and just, I don't know, like I always thought everything was going to be miraculous and I was disappointed a lot.

Well, now I feel like parents of disabled kids are really good at this. We just go into things and we think everything is fun and the littlest thing can be the greatest thing to us because our kids having fun and that's all that matters. I mean, to me, that is like in my top three priorities in life is for my kids to just have fun.They've been dealt this difficult hand, just like your kids. And so I just, I don't know. We find this happiness and joy in just like the little dumb things that are just so fun on trips or even just in town, so 

Kristy:

I think even when we're road tripping, yeah, the best memories end up being the things that  weren't planned or it wasn't the top of the scenic drive with this huge view. It was the giggling and laughing on the way up because we hit a bumpy spot in the road. Yeah, it's always the journey. 

Rhandyl:

You guys are very, very inspiring to me because I grew up road tripping. That's how we traveled with my family. We went to all these national parks, state parks with campers. That's how I grew up vacationing. We'd go for weeks on end. And to be honest ever since Remi was born, I just chalked that lifestyle up to we're just not going to be able to travel like that. And so seeing you and your family and all these resources that you have gives me hope that is not the case.

I've been trying to talk my husband into somehow justifying an RV because I feel like that's the best way that we would be able to travel with Remi, but now you guys have a trailer, do you guys pull it with your truck or do you guys actually have a mobile home?

Deonna:

Yeah. Tell us about that. It's a travel trailer. How does that work with Make A Wish? You go in I mean, because our kids could qualify for that very easily, unfortunately. Yeah. So I mean, how's that work?  

Kristy:

So it depends on, from what I'm hearing from other people, certain states do and do not cover things like campers. Right. It's a big purchase. We do have a travel trailer. It is a very big purchase. We have a travel trailer. and In Colorado, specifically, I know multiple families that have got a travel trailer, and it's always the Coleman 17B. There's a queen bed, there's a pop up table with benches that we just took out, and that is a twin bed.

That's where we change Robbie, that's where he hangs out and we just sit on our beds to eat, let's be honest. And then there's bunk beds, and it's not accessible, they don't adapt it. It's expensive in itself. So we have to lift him in and out of that. And then we have a gate that we've rigged up that goes on the bottom bunk.

So he's safely in one area and can't climb down and get into things. That makes sense.  And then depending on where you're traveling we just, because it's our own camper and we know it's clean, we put him for bathing and stuff in the shower, he just sits in the shower. And someone says, it's small, so you're sitting on a toilet, they're in the shower, you have a detachable shower head, they are small.

My husband's head peeks over the top, when he's in the shower because he’s tall, but it's been such a great way to travel. We've recently in the last year tried Airbnb's and hotels. We also travel with a little five pound Chihuahua. And we have a now one year old so this year we were like, all of us being in this tiny camper maybe is not the best idea because neither of them sleep great. 

Rhandyl:

Yeah, I was wondering how that was with a new one.  

Kristy:

We did a lot of hotels this year and tried to get two rooms or at least a little bit of separation. But to be honest, hotels are a bit stressful because Robbie is super loud. And he doesn't understand that he's loud. So he is nonverbal. He doesn't have words, but he like, yeah, like as loud as he can at midnight. And I would always be like, Oh my gosh, they're going to kick us out. So in an RV, it's just, we have a comfortable bed, it’s just us in there. I can overpack supplies right where it's just honestly, I love RV travel. I really do. It's been really nice. 

Rhandyl:

Have you ever traveled in an actual mobile home?  

Kristy:

No. So here's a fun story. So we came from Florida and like you grew up going camping and on road trips. We did not. So my dad was absolutely  not sleeping in a camper, not sleeping in a mobile home, not in a tent. He was going to a hotel, not a motel. That's funny. . And like..

Deonna:

I'm your dad's vibe. I'm a hotel girl.

Kristy:

Now, if you saw my setup in my camper I got hot water, I have all of the food that I need, it’s packed. The first thing that we did because Make-A-Wish covered Robbie's camper is we invested in new mattresses. So, yeah. Yeah. It is. Chef's kiss comfortable. I'm not gonna lie. It is though. There's AC, there's heat. Yeah, 

Deonna:

I'm accepting that RV travel will be what we need to do in the future at some point because, like, when we get to a hotel, we have to pack all that junk up to the room. It takes an hour and a half to get it all in the room. You can't leave her alone. I mean, and so we're like, yeah and me and Dane..

Kristy:

It's so hard. It's so hard. And then if you're road tripping it, like we did it, right. But we did three stops and by the third stop of setting up and then taking down again, we were like, man, this is hard. We do have a, we have a safety bed that is portable. So it goes in a suitcase. It can fly. Any medical equipment flies for free. So that flies for free. We flew to Florida with it and then when we go to hotels, that is where he sleeps is in a safety sleeper bed. And that is nice. But once you're on your third stop of setting it up and taking it down and bringing all the equipment in and out of the truck and then you forget things in the truck. So I have to walk down to the truck three times every evening. 

I'm like, I miss my camper. So we did take our last trip of the year when we went to Bryce Canyon last year, we took the camper and it went wonderfully. We did a big road trip. We were gone for almost two weeks and I don't even know how, I guess we just wore them out because they don't sleep that well at home, but they did very good.

Rhandyl:

I was going to say, how did your baby do on the road trip?  

Kristy:

She loved it because she loves being held and she loves attention and someone was, that's all we were doing all day was hiking or in her stroller or, if we stopped, it's because we were eating. These are all fun things for a baby. So she was like, this is wonderful. No one's cleaning. No one's, doing anything that is not giving me attention. So she thought that the RV was wonderful. And Robbie loves his camper. He really enjoys himself every time. It's funny because  he doesn't verbalize, he doesn't have words but when he comes home he recognizes the front of our house and he gets excited and when he sees his camper, he recognizes the camper and he gets excited and will start clapping and flapping his hands because he knows  we're going somewhere fun.

Deonna:

Fun times ahead. Well, and the thing about the RV that you were saying too I mean, yeah, I used to like hotels pre-Allie injury and all this stuff, but the RV because you can pack it up and it's just, it's packed up the whole time. You don't have to move in and out, but  also we have so much medical stuff that can't touch germs really. And so you're going in this hotel where God knows who was staying there, every time. And so it's like me and my husband are in there, like Clorox wiping all these surfaces of hotel rooms. And so the idea of having this RV that you are in complete control of who's in it. It's so much easier. And like the germs. And so that would be nice too, just that in itself. So, and it's cheaper because I mean, how much does it cost to park that at a place? I mean, on average?

Kristy:

So it really depends on where you're going and if you're trying to do affordable travel or not. So I would say average for nothing fancy, like 60 bucks a night. Yeah. But then we've had places. Hotels are like 250, right. Now gas is more because we're towing this thing. So that is a factor.

But we also are able to eat at home. Like lunch and dinner. So that saves us a ton of money when we're traveling that way. But I will say that there are certain places. We did the California coast. I have no regrets. Zero regrets. But it was a fortune. I paid over 200 a night. 200 a night to park my camper and have full hookups. But it was just one of those once in a lifetime experiences. And like we sound so fun. So we did Big Sur. Big Sur is not accessible, but it is so beautiful. And there's just barely anything out there. The beaches, because there's cliffs.

Yeah. So we figured, and this was not this past summer, the summer before, we knew Robbie was getting bigger. Our oldest son is 23 now, so he was off work for that summer when he moved here, and we thought he could carry Robbie too, and this is our chance. So, we did all of the things that summer that were not as accessible, so that the two of them could take turns carrying Robbie and being his legs, and getting places that he'll probably never see again.

Rhandyl:

Now, when you guys go to those not as accessible places, do you mostly use the kinder pack  that you mentioned earlier? 

Kristy:

Yeah, so we, we use that kinder pack almost everywhere. This year we recently got a Huckleberry hiking carrier. 

Rhandyl:

Yes, that was what I was going to ask you next. Oh my gosh, that thing looks awesome. 

Kristy:

So we haven't been able to take it on vacation yet. 

Deonna:

Like it's a trailer around your husband's waist, right? 

Kristy:

Yeah. So it's basically like you have a hiking pack on a structured hiking pack that's attached to, it's almost like a bicycle behind you, like a bicycle wheel and a seat. It is so cool. And my husband's we have to go back to all these places because we didn't get to do some of this stuff because it wasn't accessible. And now he can stretch those limits so much further because he’s carried Robbie for up to two hours, but we can't go miles and miles like that.

It's wear and tear on your body, Robbie is 70 pounds now. And our son is no longer traveling with us. So it's just him or myself. I can carry him for about 20, 30 minutes max. And then I am shot and I can't do stairs or uneven ground because I will fall. So I carry him to overlooks that are sidewalks essentially just to bond because he just loves being carried and piggybacked that way. So it's just a good way for us to still bond with him. 

But he does really like the Huckleberry. It is so amazing. They just did their first release. And they're getting all those out and then they're going to do another one. And I've been partnering with them. So I'll definitely share when he comes out again, but this was just a dad who was an engineer and he carried his daughter just the way TJ did. And she started getting bigger and he was like, is this it? Is this going to be over soon? There's gotta be something else. 

Yeah, and for someone who's really outdoorsy, like we did not grow up outdoorsy. So we, we had never been camping. We had never been hiking, nothing. We moved to Colorado. Yeah, we got his camper and we were like, we want to experience this and we traveled only in Florida.

So we had never seen anything out here on the West Coast. Never been to national parks. We were just like, we're flipping this script. So we had no idea what we were doing. And we really thought we were getting that same point that LJ was- the one that made Huckleberry. We're like, is this it? Is this the last year?  

Rhandyl:

Exactly because I've seen the Wike though, as it called a Wike, those have been around for a little while, like behind the bike, but I had just recently saw..

Kristy:

So on our last trip we went to Utah and I actually haven't shared anything from Capitol Reef yet, but we loved Capitol Reef National Park and we had the Wike there and we did, it's almost like they have their own narrows, but there's no water. It's called Grand Wash Trail. It's not accessible guys. Don't be like Kristy said this was accessible and go do it. Cause that is not what Kristy said, but what I am saying is if you have something with big bike tires, it made it,   we had to lift it over about a seven foot stretch maybe of rocks that were too much right in the beginning and then the rest we could push, but it wasn't easy to push.

It's not meant for off roading. The tires are bike tires. So fluffy sand, they dig in. Now, we met with the guys from Extreme Modus I have them linked in my bio on Instagram too. They're amazing. They make an off road push wheelchair. So for someone who, because with the Huckleberry, it rolls behind you, you do feel some of that weight in the shifting. Yeah. So if you're not comfortable with that, if you don't have the ability for that, they do have what's called an extreme modus chair. Now it's wider, so you can't get on a bike trail like you can with the Huckleberry, but it does stretch your accessibility immensely. And that would have just floated right over those rocks and that sand.

So I think a lot of the times it's about knowing what equipment you need to be able to go somewhere and to make it accessible or inclusive for your family. Al We did make it in a we did that and we did Goblin Valley, but there are no, there's not a shock system in a so every time, if you're bumping over stuff, we took off our jackets and rolled them up and we stuck them beside Robbie so his head wasn't bouncing around. He thought it was great. He laughed the whole time, like he ended up falling asleep, but it's just not exactly meant for that. It's something that you can stretch though. And it's the cheapest of all of the options. But I think a lot of it, trying to get out and adventure is knowing what equipment is out there and what fits your family's needs.

Rhandyl:

Yeah, and I saw speaking of of that the track chair and the terrain hoppers so are those things that you rent or are they at specific places or how does that work? I mean obviously I'm sure you could purchase them. But those things look awesome. They're like, are they remote controlled?

Deonna:

I've seen people go hunting on those. 

Kristy:

So, they are, they can either be controlled by the user or by an attendant. It's basically like on a joystick. And the track chairs, I would say are more inclusive if you need to be reclined if you don't have a lot of upper body control. We actually strapped a go to seat in the terrain hopper for Robbie because as he got tired, he started to slouch down and we were like uh oh.

So those, we have a program here in Colorado Springs that has terrain hoppers that are free. Some of the state parks in Colorado have the track chairs for free. Almost everywhere that you find them, you can use them for free. You just sign a waiver and you sign up ahead of time and you get on their chart. I actually spent weeks researching and built a track chair Google map. That is on my website, that you can download. It's a $7 product on my website and it took forever, but it has all the resources of where they are. And then there are some places like South Dakota, there's one that you can literally drive up and if you have it rented, they hook it to the back of your truck and you drive away with it for 10 days. No way. You can go to all the national parks, and it's from a non profit, and you don't have an attendant. There are other places where you will have someone walking with you that is a volunteer, they control it, there are some places you control it, but they still have a ranger walking with you.

Deonna:

But I think that might be fine. I mean..

Kristy:

Actually, I was like, I don't know, because I mean, I'm not saying I'm anti social, but I'm a bit weird. I'm awkward around new people and I'm like, they're just gonna hear me huffing and puffing on this hike, but okay. But they came with us and I think three times we've went and we've had different attendants or volunteers, and they were amazing. And they work at these parks, and they're there all the time. So they knew the history of the park and the kind of trees and the birds and our kids absolutely love their company, we love their company. It was not something that I would ever be concerned about again. 

Deonna:

That's cool. 

Rhandyl:

They are so cool. I would love for Remi to be able to try one of those out for sure.

Deonna:

Me too. 

Kristy:

There's a state park here. It's called Staunton State Park and they have a track chair that is free to rent. They have accessible fishing piers you can fish off of, using it or using your own wheelchair. They have a floating beach wheelchair and it goes in the fresh water and then they have these really cool kayaks or it's a paddle board. It's called a SOLfiesta Party Barge.

Rhandyl:

I was going to ask you, okay, for some reason I thought that was Ridgway State Park. Is that different? I

Kristy:

t is Ridgway State Park. Oh my goodness. So Staunton has the track chair. So Ridgway has all three of them. 

Rhandyl:

I was taking notes. I was like, I want to be on that paddle board and Remi has to go. 

Kristy:

It is so cool. Our entire family was on it and you can strap a a wheelchair to it or they will let you they'll bring down a chair to strap to it. And it's all free to use if you have a disability. Wow. We went and it was the coolest thing, and it's only 20 minutes outside of Ouray, and there's a ton of accessible stuff to do there, too.

I actually included it in the blog that I did for Ouray, because I worked with their tourism board. And they're adapting some of the things that we found when we were there and making their town more accessible. Now remember, when you go into a town this is a historic district. So there are some restaurants that they have a table, it's outside and it's on the side because to get into that restaurant is just not accessible.

So I posted saying that it was such an accessible destination for our family. And someone was like, we went there with our child. It was the worst experience ever. And to that, I told her, did you prepare? Because if you go into a town and you don't know what you're looking for, you haven't done research, and you don't know, okay, these are the places that I can eat, these are the activities. 

We did an off road jeep tour, the guy drove us up these crazy cliff roads that I would never drive on, but he's been driving them for 40 years. And it was the coolest thing. Robbie loved it. The hot spring is super accessible; it has wheelchairs. And I'm like, if you would have known all this going in, then you could have had that experience. And I think that when you have these additional needs, you have to research because if you just show up somewhere and you're like, Oh, like this main strip of shopping, wasn't accessible to me, then. Maybe that wasn't the part of your trip that was going to work. Yeah. 

Deonna:

And it's not always going to be picture perfect, even when you plan, there's going to be things you thought you were going to be able to do that may not work out exactly. It's like any type of travel, but you can't just show up somewhere and expect the red carpet to be rolled out for you. That's not what this life is like for us. You have to go out and plan it and fight for it, which, is hard sometimes, but 

Rhandyl:

Well and just like she said earlier, you plan it and you get there and it doesn't work out. But I feel like us families that are raising disabled children we know that's the life we live now. Like our plans are by the wayside whether they're going to actually work out or not, but you can't just expect everything  to just work out. There has to be, especially if you are going on these long road trips and. You just have to prepare.

Kristy:

We have had things go wrong. Oh yeah, sure. We have had things go wrong. Big mishaps. It's definitely happened and in that moment we just tried to, as calmly as we can, sit down together, my husband and I, and we discussed what is the next step?

We were on a trip last summer and Robbie started doing not well with seizures. Now we were not very far away. We're still in Colorado and about two hours from a hospital of choice versus one in the mountains. And we were supposed to go to a hot spring that day and he had to have rescue meds that morning.

And we debated back and forth and he was getting really fussy. And I told him, we're not, even if we were at home, we wouldn't be going to the hospital right now. Because he is stable and he's in recovery and he loves water. The water is really warm. It's probably going to feel great on his body and on his muscles. Why don't we go there, test it out, see how he does? And either he can recover like that, or if he doesn't like it, then we'll just, let's just cut it for the day. Right. So we went there with that expectation and he ended up falling asleep in the water in my husband's arms. He had the best nap and the water was so warm and they sat in the shade and like what a way to recover. I’m like that’s what I would want to do if I didn’t feel well.

So instead of letting that panic take over, we had to go to that place of let’s take a deep breath, let’s calm down. And if we were at home right now, would we be running somewhere? And if the answer is no, do we need to go anywhere? Is this emergent? Can we handle this? Yeah, we have two different types of rescue meds, magnet that we bring everywhere. So those are always decisions we're making. 

 Rhandyl:

Assess the situation and yeah. Well, that's good. I'm glad. 

Deonna:

You go into it knowing what could happen because it's happened at your house and you just are ready for it. Our first trip we went on was in the mountains, which I'm not sure if that was a great idea for that to be the first trip we took her on out in the middle of nowhere, but you know, something very bad happened.

And I just remember after the fact, people were like, oh, are y'all never going anywhere ever again? And I'm like. No. We're still gonna go somewhere. It happened and it was bad, but that's not gonna scare me into us quit to not live our life anymore. Yeah. We're still gonna go. It was just one bad moment that, whatever. 

Rhandyl:

Yeah, two of our biggest mishaps have been in the mountains as well, and we live and we learn, and It's, and that's the thing, it didn't scare me bad enough that I'm never going back. It just, we learned from that scenario and now we're more prepared when we go back.

And so I think that's just, it's just going for it. And I myself can admit that there's some things that, like I said earlier, that I've just chalked up that we can't do it anymore, but that's not the case. And so Deonna and I, we're in West Texas. So Colorado's really not out of the question for us  road tripping there. And so I'm loving all these ideas.

Now for others that may have to fly. Do you guys fly commercial pretty often? 

Kristy:

So we don't fly nearly as often. Robbie has flown twice. Once when we were in Florida for a second opinion, and then very recently in November we actually spent two weeks in Florida. We went home for the first time in three years. Oh, wow. And Yeah, we were very nervous with a one year old who just turned one, with Robbie and his wheelchair and all of his equipment and our little chihuahua because he must come everywhere with us and our tenure. So, it was definitely a I like to tell people.

All day long, you just have to focus on what is next, because if you start thinking about the 10 steps that you have to get to where you're going, you're going to get overwhelmed and put yourself into an absolute panic. So that's what we did from the time we woke up. Okay, all we have to do is get everyone in the car and make sure we have all the stuff. And then we got there. All we have to do is park the car and get all of this stuff onto the shuttle. That was a lot of stuff. 

I will say, if I were to do it again. I really think that I would have my husband drop me, my kids, and my stuff right where you would check in, and then he would go park it and then come shuttle, and I would just hang there, because getting it all onto the shuttle and then off of the shuttle, if you had a ton of equipment, could be extremely difficult, so if you could divide and conquer, I think that would work really well, that's not the way that we went, but I think it would definitely help.

Then the first thing we did is you go to the desk. Anything that you have that is medical equipment flies for free. I know adults that fly huge rolling plastic hard case totes that are filled with bath chairs and all types of medical equipment. One time we checked it in, they did not ask us to open it up. They just said, okay, girl, if you say it's medical equipment, it is here's your sticker. 

Deonna:

So what I'm hearing is that I should pack in totes now and say it's medical equipment. It's just my regular clothes.

Kristy:

So they open it. So the second time we were coming home, same airline, and I was like, no, it flew for free. And he's what's in it? And I was like, it's a safety bed. And he was like, open it up. I was like, cool. But it's just, it's going to look like a bunch of metal bars and mesh. Yeah, like a tent. It's not put together, and he was like. Okay. But that's basically, they will have you open it up.

If there is anything else in that container that is not medically necessary, it does not fly for free, but it doesn't matter how much it weighs. So formula, tube supplies, diapers, wipes, anything. My personal recommendation is to carry all of your medication on board. Do not put anything underneath. Now we did do some of the other stuff like medical equipment, but not medication. Medication came with us. I always travel with a doctor's note when we go on planes. So I have his neurologist write a new note, with a new date, that says he is required to have his bed for safety, and then she wrote on ours, basically that Robert and his medication cannot be separated. If they are separated, it could cause him to be hospitalized. So if they were like, Oh, there's not enough room. Oh, well, take somebody else's bag. You're not allowed to take mine. Great tip. Yeah. So that's a really good idea. I was like, Oh, that's really helpful. 

But that's what we did. So his wheelchair you can roll right up to the gate and then they take it and then the car seat you can check in because his car seat's huge. He's got a big special needs car seat. So they took that too as free. We got there, they tagged that, they tagged his medical bed, his equipment and then we got it back when we got off. So they will let you be the first person to board a plane. It is not a requirement-we get the closest seats to the front we can. We did pay extra for leg room, which I feel like we needed - Robbie climbing on you and all these things, we just, we needed. 

Deonna:

Does he sit in a car seat that is in the chair or what does he do? 

Kristy:

So we have once flown and they let his car seat be on the plane this last time Frontier said that they don't allow car seats Robbie can sit up on his own or he just laid in my husband's lap and fell asleep. But if it is medically necessary you have that or they have harnesses that you can buy. We have one, it's a safety rider harness that you can strap in. So just in case of emergencies, like on planes. If we couldn't bring things like that, if we needed him to be sitting up. So it just depends on your airline. You can call the airline ahead of time. I will say there's a program called TSA Cares. You fill out the forms online ahead of time or call and let them know you're coming and they're supposed to have someone there and waiting. That, that did not work, so I filled it out for Denver no one was there. They couldn't find a supervisor. It took over 45 minutes for them to pat down Robbie and my husband, and then they wiped every single,  pocket in his bag. And I was like, I just want to say thank you for keeping everybody safe.

And I was as nice as I could be, but I had a huge line of people behind me that were starting to get frustrated because I'm sure liquids, right? So I have a note that says I can travel with all these liquids, but because they're over the allowed amount, and I suggest that you pay attention because they like to open things and then test them and you can decline that.

So, oh my gosh. If you open formula, it goes bad, you're absolutely, not. So I told them, no, you can wipe the outside, but then they have to go through wiping more in your bags and your hands and all the things. So just plan for time, just be patient, pack your patience, plan for extra time just in case in Denver, it took us the entire three hours to park our car and get to the gate.

They were boarding. We choose to be the last ones to board and we sit in the front. I go on first, I start dropping bags and then let the person know that's going to be sitting next to my husband, there's four of us. So we always end up with one random person that my husband is coming on with our disabled child. Honestly, everyone's always been so sweet so far.

But we just, I get on ahead of time and let them know I take, TJ's and Robbie's bags and just, they let me go in and out of the plane and and then one, oh my gosh. TJ gets on the plane and gets settled. I go back out one more time and I lock his wheelchair. So if your wheelchair has a buckle, use it.

If it doesn't buy one I do not let them open and close his adaptive stroller wheelchair. Things will get broken. So I fold it up. I've seen a lot of bad videos. Yeah. Yeah. I know people that if you have joysticks or things like that, they will like bubble wrap certain things. Robbie's is honestly pretty durable as long as I make sure like his lateral supports are in and it's buckled shut.

I'm sure they don't love it because it's super heavy and they have to carry it back up to get to us at the other side. But it's not broken and I can't afford for that to happen because then we wouldn't have a chair. So, Those are my tips. And then once we get there, you're basically the last person off the plane because generally speaking, it takes them forever to bring up the strollers in the wheelchairs. And if your wheelchair looks like a stroller, it's going to take longer. 

Deonna:

Well, that just gave me anxiety. 

Kristy:

We made it! So all I'm going to say is it was a day and every step we were just like, just get through this step and then we'll go to the next one and then we'll get through this step and then we'll get to the next one and we made sure we changed diapers and fed right before we got on the plane. We also double diaper, which sounds crazy, but if you're getting on a plane, I put two diapers on. Or if it's going to be a long road trip and I'm like, maybe he'll fall asleep and won't be awake at this stop. And I don't want to wake him up because he'll have a seizure.

So it definitely prevents messes.  

Rhandyl:

Great tip. 

Deonna:

Man those are really great tips for flying because, like for us personally, flying's probably not going to be in our future because of the oxygen and because she can't get out of her own chair. She has to stay in that chair because she's paralyzed from the neck down. She has no trunk support of her own, no core strength at all. But for a lot of people, that is a really good tip. Just take it one thing at a time. Don't think, Oh, I've got to go get on a plane with my disabled kid today.

And everybody's going to be annoyed because it takes so long because the general public get so weird towards us and it's hard. I mean, I've had lots of moments where everybody was waiting for me to do something and I just feel stressed and they don't understand how, I'm getting upset that they're all having to wait for me. Like it's, we don't like it, but now years into it, I'm like, you're fine. You can wait for me. But I mean, back in the day that, like at the beginning, I did not feel that way. I was always in a hurry to make everyone else happy, so definitely don't care about that anymore. 

Kristy:

It takes how long it takes. 

Deonna:

It does. It does. Okay, I personally just want to know, have you gone to any large cities that,  cause I know you go and do a lot of outdoorsy stuff and I love that. I love that side of travel, but I like big cities. Is there any big cities that you guys have been to that were accessible? It's like they all are supposed to be, but they're not..

Kristy:

I think our favorite one so far, we went to Seattle. And we did the needle I was a bit disappointed and reached out after because it's accessible all the way to the top and it's supposed to be accessible to get outside and their lift was broken. And when I asked the employee they were just like, Oh yeah, it's been broken. Oh, of course. Okay. So are we getting it fixed? Yeah. Like today?  Right. I mean, luckily my son is not so heavy that we can't just lift him and his chair. It was like three steps, but you had no signs when I went to buy my tickets and you saw my son in a wheelchair. You didn't say, Hey, we just want to let you know we're so sorry, but you can't access this. Right. There was like no notifying until you got up there and it was like, Oh, I can't get outside. Everyone else can. But it should be accessible, the needle. And it was so cool. And you could roll on top of like glass floor and see through the bottom. I did not roll him on the glass, if I'm being completely honest, I barely stepped on it myself just because I was nervous but we did that. 

And then we did the Pike's market where like they throw the fish and we went to eat over there. And that was honestly really friendly. And then we did something super cool…the whole reason we went to Seattle, we were supposed to go to Mount Rainier National Park. And then I saw this Instagram reel and someone was in a floating hot tub out on the water. I was like,  that's so cool. We have to do this. 

So we surprised our kids because Robbie's obsessed with water and swimming and he loves warm water. And he loves boats. So I was like, this is, it's a boat full of water. How does it get any better than that? And it lights up at night. So we did a sunset cruise on the Seattle boat tours in the hot tub. And it was the coolest thing ever. Now, to get on to that was not accessible. There was stairs that we had to carry him down. Yeah. Unfortunately, but they were so nice and working with us and let us get in and get out as we needed to. And then they have a area set up with showers and big bathrooms that you could change him and we showered and bathed him right there.

You're the only person there at that time when it's that late. They book them far enough apart and it's the water is filled with fresh water and heated up every single time. So you don't have to worry about the chlorine in their face. You don't have to worry about germs. It was wonderful. We loved it. We were, it was light when we went out and then we saw the sunset over the city and then it was dark and we were still out there in this little glowing boat. It was really cool. So I think that was like the top city that our kids have liked. 

We typically don't love cities because they're supposed to be accessible and they're not. And there's a ton of people in your way. So that was, it was a good little change up though, because it was like a big national park trip. 

Deonna:

Yeah, that does sound really fun. We were considering, which I know people have feelings about Las Vegas and your kids would see some things you may not want them to see in Vegas. But I was telling my husband, I even think Vegas has to be accessible. Like you think of how many people go there from all over the world. I don't know how many research, but I'm like, and you think of all these kids who love lights and they love, just seeing these things. And I was telling my husband we should go to Vegas, go see shows, do all these things that Allie could do.

But but yeah, I assume it’s accessible just because of how many people go there every year, but you never know. I mean, until you really research it.

Kristy:

I talk to one of those amazing RV families that has helped me so much throughout the years. And there is a lot that's accessible in Vegas, we were actually planning to go right before I had Taylor. But I could barely walk at the end of my pregnancy and we had to cancel it. I was so sad because we had to cancel it. It was going to be the perfect time of year and everything. But it's definitely getting rescheduled because the Valley of Fire is out there too. So there are a few different attractions that are at least semi accessible that are local to there.

And then in Vegas, there's all of the big light signs that are no longer up anymore. There's  a place you can go and walk around and see them, which I was like, Robbie would love that. And they said that was super wheel friendly. 

Deonna:

Well, and, there's so many shows you can go see, which my daughter loves and stuff. So that's one of these cities that sounds random for little kids, but a lot of disabled kids love that kind of stuff. So yeah, that's on my idea list. 

Kristy:

Meow Wolf was one of those things that I was like, that is definitely for adults. And then I reached out to them, I was like, are you accessible? Could kids come? Because it looks like this light up glowing alien universe, and I feel like my son would just love it. Right? They were like, we're totally accessible. There's all these different ways you can get around, but there's an elevator to every floor. We don't do strollers. We don't do backpacks, but we do wheelchairs and you can carry whatever you need into, if it's medically necessary, you just let them know.

So I was like, okay.  It was the coolest experience. And there were not any kids really there when we went. I guess we went at nighttime. Maybe that's why, but all of the lights now, my son doesn't have the form of epilepsy where lights affect him. It's actually a really small amount of people that happens where they're photosensitive like that.

So not something that we were concerned about, but it was really cool. And our other kids loved it too. And it was one of those things that I was like, see, I would have never done this in the past. And then once we got out of our shell, I was like, we need to start asking more places. Could I bring him here? Cause I think you would like it. 

Deonna:

Well, that's, I mean, that's a good point. Cause if you don't know what Meow Wolf is, it's this,  art installation experience.They have one in Denver, right? And then they have one in Santa Fe. I think that's where it started. But, when you call, like we went to a thing like Meow Wolf in Houston called Seismique. And I thought, Oh, I like, I called in the parking lot outside, called in there and was like, I'm out here in the parking lot. I'm not planning as well as you. And I'm like, I have a kid out here, she is in a wheelchair. Can I come in?  And they were like, yeah, come in.

So we go in and she had so much fun and we took a million pictures of her posing in all these different places. And that's one of her favorite memories and it's those photo Instagram experience type places, but I'd never even heard of it, but I do think it's good when we were in there, the owner came up to us and was like- Hey, how are we doing? Is this a good experience for you guys? because we want it to be.

And I do think that is huge. People caring. People caring about your kid, yeah, it's, and I think when you call these travel boards and stuff, those are real people in that town who care about you coming to their town. And so they might help you a whole lot more than you realize. They want you to have a good experience.

Okay, so we've talked about traveling in America and obviously there's a million things like you could stay here in America and be happy for the rest of your life with your kid. There's just, it's such a huge country. There's a million things to do, but have you traveled outside of the U.S. or do you know someone who has and has had success with that? Because that's just like a whole other level. Even if you are not disabled, that is like Oh, my gosh. I've done it already.  It's intimidating. Yeah. 

Kristy:

It's a whole nother level. So I myself have not traveled outside of the country much, and we have never taken Robbie. Jennifer Allen, she's on social media as Wonders Within Reach. She is amazing. One of her sons is in a wheelchair, and they traveled all over, and I mean all over, like different countries. They went to Croatia. They've been to London and all types of places. So definitely something that she specializes in and she shares their journey and has an amazing blog with either international travels or in the States and she's also a budget traveler, which I'm not as great at.  

Deonna:

Yeah, I don't, I'm not good at that either. Well, that's nice to know her account because, is just so intimidating taking that first step and being like, we're going to go on a trip and it's going to be a little easy, a little fun, but 

Kristy:

She does like House Swap

Deonna:

Oh, she does?

Kristy:

She does. And she like, she's been like with other people from different countries too. So it's super affordable and they swap houses. I don't remember the name. She's a great person to talk to you about stuff like that.  

Deonna:

I live in a town that nobody wants to come visit for fun, so that's a bummer. 

Kristy:

So that's what she said, though. She said you might think that you live in a town that no one wants to go to. I don't know. I saw an interview she did with a company and she was like, I thought the same thing. But then someone was coming from a different country because their kids lived in this town and they wanted to swap houses and we went to a different country. I don't know if that was completely accurate, but it was a story like that where I thought no one would ever want it. My house is not extravagant and like somebody wanted to swap and she got an amazing deal. That's crazy. I'll let her tell it, but  it's definitely interesting to listen to. 

Deonna:

Well, and I joke about our town. I actually love our town a lot. It's not a massive tourist destination or anything, but there's fun things to do. Me and my kids, we get out and do stuff in town all the time and have a great time. I think a lot of people think you have to go on these epic, huge trips all the time, but even just, even with disabled families, I feel like sometimes getting the courage to just even get out in your town and explore your own town is intimidating sometimes. So, it's that first step.

Kristy:

You'll find stuff too, like in your backyard, in your town. We were traveling really far finding things. And then someone told me that 10 minutes from my house. We have an accessible park with these cool swings that I was super excited to find in California. And they're right around the corner from me, 

Rhandyl:

There's so many out there now that are, they're redoing parks everywhere for inclusivity and it's just awesome.

Kristy:

We started adding them to the Connected Parent site. I, I partner with them as well. And it's a resource. Another medical mom that was like, Hey, there's this gap and we can't find anything. And she built this website. And there's inclusive playgrounds on there. So you can go to the Connected Parent site. You can search by zip code and see if anyone's added an inclusive park near you. It's actually how I found one near me. Somebody went on and added it and I was like, what? Oh my gosh. I was traveling farther away. So super cool and all types of  experiences.,And then it's actual medical parents that are leaving reviews, I love that site. It's theconnected parent.net.  

Deonna:

I've learned so much from you today. I, my brain is not okay. I know

Rhandyl:

Yeah, like she said, I have, my brain is hurting, I've learned so much from you today. I this is something that we usually ask all of our parents that come on the show with us. So, Kristy, for you, what's the best thing that's came out of parenting Robbie?  

Kristy:

I think being able to find and accept myself. So I think that as just a person, right, it was always something that was really hard for me. And, It was so easy to love Robbie for who he was, right? It didn't matter if he could talk. It didn't matter if he could walk. I just, seeing the joy in his eyes when he liked something, it was just so easy to be like, wow, you are awesome.

And then as I started advocating for him and even for my other kids, I was like, man I don't do that for me and I think so many of us as adults, we start to realize when our kids start to get diagnosis of being neurodivergent, that we ourselves have some neurodivergence and that maybe we're not accepting it or we're not standing in that and accepting it.

Accepting ourselves for all of who we are. And it's okay that we're unique and we're different. It's not only okay, but it's really beautiful. I think that was really hard for me for a long time. And the more that I poured that into Robbie and I believe that so much about him, I was like, man I gotta believe that about me too. 

Deonna:

It teaches you a lot about yourself, that is for sure. Oh, yeah. Stuff you never thought you were capable of, all of a sudden, you're doing it, like carrying a 70 pound kid through a canyon, so.  

Kristy:

Yeah. It's definitely stuff that I never intended. I think that I had my whole life planned out, right, and there was this whole map of what I was going to do, and I didn't do any of it, and I, you could be like, wow, that's really sad. But I somehow landed on something so much better and in my path and in my work and what I do, I would have never guessed that this was going to be it.

But I'm glad that this is what I'm doing and I find joy in what I'm doing. And I think sometimes when things don't work out, it's because something else is coming. 

Rhandyl:

That's right. We appreciate what you're doing so much. 

Deonna:

Okay. So you said you have a website. Tell us how people can find all of your stuff so that they can explore for themselves and get ready for their trips.  

Kristy:

Yeah, so our website is www.accessibleadventures.net. It's actually a really good landing place to find everything. There's a follow us button and it has all of our different social media links. There's a blog on our homepage. When you just type that in, if you scroll down, there's a little search icon. So if you're thinking, has she been to this place or. Have you blogged about this place more specifically? Cause I'm trying to add as many as I can. If you type that in, it'll pop up anything on my website that has that as a keyword. So if you typed in Colorado, anytime I've blogged and wrote about Colorado, it's going to pop up in there.  So that's a helpful resource. 

And then on Instagram of all the social media platforms, I feel like I am the most active ,tends to be my favorite mostly because I have everything so organized there.So I have highlights across my page. So if you're looking for Bryce Canyon, if you go to the highlight, all of the reels are there, and then there will be a link to the blog I wrote there and the same for some of the other tourism boards that we've worked for or like states. So California, we went to California, you go there, you click it, and then anything that we did there that was tagged in California, I just went ahead and put it in one little bubble.

So it's easier to find. There's also a highlight on that page that has grants and resources. So any grants that I found that can help purchase equipment resources, 

Rhandyl:

All the fancy things that we were talking about.  

Deonna:

Oh my gosh, that costs $10,000.  

Kristy:

Depending on which one it is, some of them are very costly. Something we didn't get into is adaptive sports programs. And that's something that I don't currently have a list up. I'm working on something. But you can always look up adaptive sports programs in an area that you're trying to travel to or your hometown. A lot of times they have that equipment, like adaptive kayaks, paddle boards, track chairs, whatever it may be, and you can go use that and it's not nearly as costly. 

Deonna:

Great. That's a great idea too. Well, I'm like overwhelmed with everything you've told us. I'm going to have to listen to this 10 times to soak it all in, but we're just so thankful that you talked to us. We're such a new podcast and we're so thankful that we got to meet you and talk about all this stuff. And we're going to link as much of this that we talked about in our show notes. This is going to be the longest show notes we've ever had to do, because there's just so much, I mean, it's crazy. All the things that you have shared that I think people are going to really need. 

I mean, if they want to take their kids somewhere, and I do think it's so important for families to just try to get their kids out there outside of their town and just do something. And as you've talked about there's budget ways to do stuff. It doesn't have to be expensive all the time. And so we're just so thankful for you. And we're so excited about all this information. Thank you so much.  

Kristy:

I'm glad that you guys had me. I'm excited to see where this podcast goes. 

Rhandyl:

Thanks, Kristy.

**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.