Speaker 0 00:00:04 Today. I have a very special guest drew Ann Long, who is the founder and creator of Caroline's cart. Caroline's cart provides caregivers and parents a viable option to transport, a special needs individual through a store while shopping, without the impossible task of having to maneuver a wheelchair and a traditional shopping cart. At the same time, you may have seen one at target Wagman's Lowe's or even whole foods. It's named dr. Caroline. The special needs daughter of drew Ann and David law drew and saw the need for Caroline's cart. After realizing her special needs, daughter would outgrow a typical shopping cart. Caroline's cart has now become a national reality retailers, such as supermarkets, hypermarkets, shopping centers, and malls offering Caroline's cart, provide a valuable service to many families in our communities. All families deserve this shopping experience. Go to Caroline's cart.com to find a map of stores that currently offer Caroline's cart. And there are materials as well to help bring one to your store. If you're a current store manager, we strongly recommend purchasing one to be a more inclusive store. And now for the episode, enjoy listening. All right. Welcome to another episode of freewill and with carton. I have drew Ann here today in the house. She is the founder creator of Caroline's carts. Welcome drew Ann, how are you?
Speaker 1 00:01:34 I'm good. I'm excited to be here.
Speaker 0 00:01:35 Thank you. Yeah. And I just wanted to share your story about the creation behind Caroline's carts. So start from the beginning. I know you have a daughter named Caroline and.dot dot.
Speaker 1 00:01:52 Charlie is now 19 years old. When Caroline was born, she was born in 2000. When I left the hospital, I told I had, I was told I had a perfectly healthy baby. She was my second daughter. So when we went home, I had no idea. She had a disability. None. The life was great. I'm the mom of two, but by the time she hit about six months old in my heart, I knew something was wrong. I had no idea what was wrong, but I knew something was wrong. By the time she was around 12 months old, it was pretty obvious. So that started the testing phase of trying to find out what was wrong. So it really did take a couple of years. She was not diagnosed until she was about three years old and she has a genetic condition called RET R E T T Rett syndrome.
Speaker 1 00:02:43 It is something that happened at conception. It is genetic. It is not anything that I carry or my husband carry. It can happen to anyone anytime. It's primarily only in girls. You might have a boy here and there, but generally it is just girls and it affects one in 10,000 births. And it is, it's a pretty devastating diagnoses or it was for us. Caroline does not walk or talk. She has never walked. And she's a happy child. She's aware of her surroundings, but it's not an easy diagnosis by any stretch. So when she, you know, and having a child with a disability, I mean, you are just, it's baptism by fire. You are thrown into this world, you know, nothing about, you know, nothing about my new saying is you don't know what you don't know. You will hear me say that many times because I knew nothing about the world of disability.
Speaker 1 00:03:39 So, you know, one day at a time and, and, and life, you know, days turned into months, turned into years. And before I knew it, Caroline was around seven, eight years old, still not walking. And as a mom of three, I then had another child. I found myself at the grocery store quite often. And when she outgrew what the stores provided, I went to the store manager and I said, I'm sure there's a special need shopping cards. Could you please order one? Or do you happen to have one? I just don't see it. And that's where it all started. There was never a special need shopping cart ever. It was born out of a need, born out of a need for my daughter. Sure.
Speaker 0 00:04:20 And I think that's how all great ideas come from. Right? You see a problem. It either is personal or you see someone else struggling. And then you're like, okay, what can I do to fix it? It's that mindset shift. And I think it takes a particular type of person that, I mean, something you were going to the grocery store on a regular basis, you had multiple kids, they were young. And it's like, how, how can you like carry all those groceries? But also you have a child who needs to use a wheelchair and wants to go to the grocery store. Right. You can't just leave him.
Speaker 1 00:04:53 Right. Right.
Speaker 0 00:04:55 What were those initial conversations that you had with those grocery store managers?
Speaker 1 00:05:00 Well, I'll tell you this. I I'm sure you've seen them. All the stores have the fun kitty cards. Okay. You know what I'm talking about? They might look like a race car or, uh, you know, um, a fire truck. So knowing that retailers had those kinds of cars and electric scooters and three retailer has an electric scooter. I like for sure for adults. Right? Um, I could not believe that retailers were providing cards or these different people groups yet the disabled community was completely looked over. And I am not. I'm very thankful for those variety of cards because of those variety of cards. I knew I had a shot. It was very, very disturbing to me that there are disabled children and adults in every community, in the United States, we all eat food. We all go out. Sure. Yet we don't have any options in these retail environments. The toddler has options. The, the little twins have options. I've seen carts for twins. If you can drive an electric scooter, you have an option. But if you are, if you are disabled, like my daughter, there are, there were no options. And I could not, I just could not let that go. And I thought, you know what? This is something I've got to try to do.
Speaker 0 00:06:26 And so how long was it until you wrestled with that idea and like, realize that it was a big problem and like you, on, in your book, you talked about just drawing something on a napkin. What was the timeline there? Right.
Speaker 1 00:06:39 Well, it was about a year that I was talking to different managers around my town and really every one of them was kind of the same way. Like, Oh, we never thought about a specialty shopping cart. Very interesting out there. Let me do, you know, so it was a year of talking and after a year of talking and really realizing it was not anywhere as exactly what I did. I sat down and I drew on a piece of paper, what would not only accommodate my daughter, but millions of older children and adults millions. So started on a piece of paper and my dining room. Yes,
Speaker 0 00:07:18 That's so great. And then from there, where did that, it sounds like you went to the university of Alabama and what was that conversation?
Speaker 1 00:07:28 Right. I went to, um, I went to UAB, which is, um, university of Alabama at Birmingham. And I went there and I went to their engineering department because I thought this cannot be that hard. So I really just wanted some outside information. Maybe somebody that was more experienced at this, just to bounce my ideas off of and every where I went, everybody thought, gosh, this is a great idea. Why has no one done this? Why has no one done this? So, yes, just not knowing how to do this. I was seeking a lot of outside advice and I did start at UAB. They actually designed, designed the seat mold for me. Um, but they did not really do my prototype. They didn't do that, but I really, I just got encouragement from them, ideas from them. I developed a team on really just ha on next steps and really how to make this come off of a piece of paper, into a prototype.
Speaker 0 00:08:26 Sure. It was like that initial launchpad. It seemed like, and right, right. Sure. So then years went by right. Of just going and people trying to get them prototyping, getting the patent, right. Getting, um, trying to find who in the world can make a prototype for me. And obviously it costs a lot of money. What was that financial burden like, like you're growing your family, you're on a single income. Not only do you have children with that also adds to the financial burden.
Speaker 1 00:08:58 When is that right? It was a tremendous burden. You said early on in our conversation, but it takes a special type of person to do this. And let me tell you the type of type of person that needs somebody very naive. And I am so glad I was so naive because had I known the financial burden, I would have never done this. My thought that this was not electric. This was nothing. It was not an app. This was something, this was a modified modification of a standard cart. I never dreamt that it would bring us to the brink of bankruptcy. I never dreamt that the patent cost, the attorney fees, the prototype, just my very first prototype that I got in Indiana. My very first prototype was $28,000 or one cart or one part, one part $28,000. Had I known that a couple of years before, before I jumped off this cliff, I would, of course never done it because we didn't have that kind of money at all.
Speaker 1 00:09:57 So yeah, it was a, I'm glad that I was naive that I did not know any better, but because once, once I got years into what I could quit, right. So much money, time, energy to quit, wanted to quit, but I couldn't afford to quit. It was that it was that difficult. But like you said, I had a husband that traveled for a living. I had three small kids at home, one with a disability. I didn't work on this eight hours a day. I didn't have that luxury. I did this when I could. So I would be at the dance studio. I would be at therapy. I would be at the tee ball field. So this was a slow go because I didn't have the luxury of working on it all the time.
Speaker 0 00:10:41 And I guess what advice would you give to some of those other people that are also doing those side projects that they're really passionate about it, but they, this is not their full time job,
Speaker 1 00:10:51 You know, do your homework and know what you're getting into. You know, I was very, um, again, naive and I just, I w I was so excited about it. It's very exciting to do something like this, and it's very scary. So know what you're getting into and be willing to take risks. You have to be willing to take risks. And I, I knew that, but I never knew the amount of risk that it required to get a product to market. So if you're, if you're willing to take the risk and you're willing to stick with it for a long haul, then you might have a shot at it.
Speaker 0 00:11:26 Nice. And so you got that initial prototype. What was it like, what was going through your mind? Like everything that you drew out on paper was now?
Speaker 1 00:11:36 Well, that's fine. Yeah, it was, it was very, it was just hard to believe because, but by the time I got to the prototype company, Indiana, it had been several years. Sure. This has been several years of, of, uh, trying and failing and, you know, being a mom in another hospital with Caroline. Um, so by the time of finding the money to pay for the $28,000 prototype for the one prototype, just one people, just one. So when I saw it, it really was like, it was, it was so exciting. Yes. It was terrifying because now I had made it to the next step and it's like, okay, now what do you do with this prototype? It made it real. It made it like, Oh boy, this was a huge investment, a huge step. Now I've got to get, go from prototype to production, any factoring. Right.
Speaker 0 00:12:29 Wha what was that like? It sounded like there was, it seemed like you went from, you talked to target and Walmart and all these other stores. And they were like, there's only one company, the monopoly that creates cars and everyone sources from this one company.
Speaker 1 00:12:47 Right. And I was not with that one company. So that, yeah, that was pretty bad. So once I got my prototype, I went to social media and I created Carolyn's cart, Facebook page, Twitter, Instagram, all that. And hindsight's 2020. I actually had created that a little bit too soon because the second I put my prototype in pictures and I put it out there instantly, instantly, I had thousands of people saying, I need that. Where do I get that? What store has that I need to shop there? Oh my gosh. I had been wanting this for years. So I remember thinking, Holy cow, I have one cart and it's in my dining room. So I am with the world. I've got to figure this out. So I did start going to stores and showing them my prototype. And I will tell you that most stores, when you point out the lack of accessibility, the lack of inclusion, they do listen.
Speaker 1 00:13:51 And they don't know. You don't know what you don't know. And a lot of them said, Oh, our stores, our stores aren't accessible. Um, we have handicap bathrooms. We have doors that open. And I said, that is a step in the right direction. However, your scores are not accessible when it comes to your shopping carts. So many of them that's when I learned about a company called tech and they all bought their carts from them. And I knew I had to get to them somehow. So here I was out peddling my dog and pony show, and I didn't even have a manufacturer yet. But what I was trying to do was build demand, build demand, um, build demand from the corporate side, build demand from the consumer side, all along, not having a manufacturer, but the only way that a small, you know, small mom from small town, Alabama is going to get attention is if the demand is there. And I think that was one of the hardest things for me, was creating that demand.
Speaker 0 00:14:56 So what's a typical conversation. Can you elaborate more on you're going into a manager's office and you're do you just point out and say, Hey, you don't have an accent. You don't have any shopping carts they're accessible or do you have to approach it a certain way?
Speaker 1 00:15:10 Well, Oh, well of course I was very careful. What I did was I would, I would find out the carts that they did have. I pointed out all those great fun carts for the toddler and the ones that hold the, the twins and the ones that hold the preschoolers. I'm like, why do you have all those? And they're like, well, you know, we want, you know, traditionally moms, of course, sometimes dads do the shopping. And when they come with their kids, we want the kids to be happy. The kids to have a place to sit, because if the kid is happy, the mom's happy and she's going to stay in the store longer. It's not like, well, that's great. I love that. But what about the special needs child? What about that older child with a disability that can't walk? What about that older child with a disability? That's a runner, perhaps they, you know, they need to be confined a little bit. They have sensory overload and that's when they would, they would listen because they were like, you know what? We, this is a, this is a segment of the population that has been overlooked. That's how the conversation went. So, you know, I just really wanted to point out that they were helping a large variety of their customers yet they had totally forgotten the special needs community.
Speaker 0 00:16:27 I think it's important when you're going, just in any advocacy. Right. Um, and I do this a lot with restaurants and with other facilities, mainly like restaurants and bars. Cause I like, you know, going out and doing things and stuff and it's okay, well, your bathroom doesn't have grab bars. And so how do you approach that conversation in a delicate way? That's not like your total garbage because your bathroom isn't accessible. Right? And so as we build this inclusive world and community, it starts with having a conversation and being really diligent and effective, but also, you know, going at it at a delicate way because you never want to like yell at someone for being inaccessible. Because again, they may not know.
Speaker 1 00:17:16 Right. Right. And I did find out over the years that people want, once you pointed out the problem, and then you showed them the solution, they were very interested and they wanted their story to be accessible. They wanted to promote inclusion. So, you know, I think there's a right way to do it and there's a wrong way to do it. But I think you need to point out the obvious, which is here's all your fun cards. Show me where you're helping the special needs community. And that's, that's every time where, where would be like, okay, well we're not. And I'm like, well, this is what has to change. That's the change. You know, people do not realize that the special needs community is the world's largest minority group. We are the world's largest minority group. And a lot of people really don't know that.
Speaker 0 00:18:08 And so the industry that you're approaching, what were some of the stores, um, maybe it's a particular store that you got a lot of engagement from and were really receptive to the idea and or some of those other ones that give you a lot of pushback. And what was the pushback that you got?
Speaker 1 00:18:25 Okay. Gosh, you know, there, there was just such a wide range of so many different responses and answers, but I will tell you that. I think one of the biggest heroes for all of us in this was target target was the first big, huge national chain that said not only do we like it, we love it. And we don't want it in a few stores. We wanted it every single store. So that's right. Every so, so that was absolutely tremendous because if Target's going to do it, guess what other stores are going to follow their lead? Now they were not the first national chain to put it in. They were probably the largest national chain. Um, Wegmans is on the East coast and they were actually, I think the first chain to say, we're putting it in all our stores. So Wegmans, again, people look up to Wegmans and acquaintance does it.
Speaker 1 00:19:27 It makes people say, huh, maybe we should do this. So many stores have followed their lead, but I will tell you, we are still, um, still some are still saying no. And one of those is Costco. Costco is not interested at all in Caroline's cart. And it's been very, very disappointing. I don't understand why they don't have a reason why. And a lot of, if somebody might listen to this and say, but my Costco has it. Well, let me just tell you, corporate Costco has said no to Caroline's cart. I'm not giving up. We are not giving up, but I will tell you that there are some store managers, I would say probably maybe 10 to 15 store managers had bought it anyway. They either had paid for it, or they have maybe some of their own store funds that they can use for whatever they want. So we are in about 10 to 15 Costcos because of the store manager sees the need, these the need.
Speaker 0 00:20:34 Yeah. I would say anytime you close the door on accessibility and inclusion and diversity inclusion, right? It's that whole bubble of anytime you close that door, it's always questioning like, you know, well, where are your real values in your car?
Speaker 1 00:20:51 What do you really stand for?
Speaker 0 00:20:53 And do I want to be a customer of a store that doesn't promote inclusion and accessibility?
Speaker 1 00:21:00 I've gotten several. I mean, I've probably 50, 60 emails over the last couple of years of, I will no longer shop at X store at Costco store because they do not recognize accessibility and they don't, they don't care about changing it. So you absolutely can lose, um, a customer base over something over accessibility and inclusion.
Speaker 0 00:21:27 I mean, I've run into businesses that are like, no, wait, we, we won't add a ramp through the back or, Oh, we won't add grab bars. I'm like, all right. Well, all my friends that I've rang weren't were boycotting. You like goodbye to our business. Like, and I'll promote it on social media that you choose not to be an inclusive place, like. Right. And it sounds like you also, Oh, go ahead.
Speaker 1 00:21:54 I was just going to say, in this day and age, there is absolutely no excuse for a business for a retailer to not be inclusive and accessible. There is no excuse period.
Speaker 0 00:22:07 And so you have the community behind you as well, advocating and asking for cards. Cause you're not the only one out there, you know, asking for cards. So how has the community, so like myself, if I were to just go into my whole foods next door and be like, I didn't see Caroline's cards. Can we add it? How does that work?
Speaker 1 00:22:26 Right. That's how we've grown. Um, again, back to creating the demand. So, you know, thankfully we don't have to do that at target because we are in every target. However, that is not the norm. I will say Walmart. Okay. So corporate Walmart has approved Caroline's cart. It's approved check. However, they are leaving it up to the store manager, the store manager, once they, the store manager can buy it. If the store manager doesn't want it, you know, the store manager says, no, I don't want that. Which is, which is so wrong. When that store manager has every fun cart and all the electrics theaters yet they are. So, so please help me understand how corporate Walmart can tell a manager and give them the, give them the ability to say whether their stores accessible or not. So to answer your question, if your Walmart doesn't have it, you can go to the manager and say, Hey, corporate has approved it.
Speaker 1 00:23:24 Or in their ordering system, they can go right to their, probably their iPhone and pull up all the shopping cards. And they will actually see Caroline's cart. They just have to punch it to order it. So I knew one, right? That's right. Well, a lot of stores have to believe or not, but you know, uh, our website Carolyn's cart dot has the phone, has our phone number. So you can give the phone number to the re the manager, which is one 800, three, five, one kart. Um, and I will tell you, I don't, other than Costco, I do not know of anyone else corporately that has said no. I think that the roadblock has been, we were hopeful that these corporate decision makers would make a product for all their stores. Um, and that that's not been the case. Uh, Lowe's home improvement. We are in every single Lowe's nationwide. They have done it as well. So very kudos to Lowe's. We're very excited about that.
Speaker 0 00:24:23 It is interesting. I'm wondering, like comparing the different competitors, like Lowe's versus home Depot, you know, looking at their inclusion efforts there, have you seen like target versus Walmart? Have you seen the disparities in the companies and how they value accessibility?
Speaker 1 00:24:42 Absolutely. Home Depot has had the opportunity and we are still very hopeful. Um, they have kind of taken the Walmart stance. They've approved it, but, uh, we'll just let the manager decide, you know, if he wants not, no big deal on. So, so, so that was their corporate stance versus Lowe's corporate stance of, Hey guess what? Every store should be accessible every store. And I hear time and time and time again from families that say, well, I have to shop at Lowe's because that's the only way I can get my child in the store. That's the only way. So a lot of families are choosing where they give their business based on where Caroline's part is. That's
Speaker 0 00:25:24 Really eyeopening and it's, it should be eyeopening to the businesses as well thinking, you know, you're losing a large percentage of
Speaker 1 00:25:33 Funny.
Speaker 0 00:25:35 What's the cost of a single Caroline's cart,
Speaker 1 00:25:38 One Caroline's cards. I believe it starts right now. And I will just tell you that, um, the manufacturer sets all that, but I can give you a break on it. I don't want anybody to hold me that I would say without shipping it's around I think 800 to $850 without shipping. So drunk. Well, when you look at the electric scooters, a drop in the bucket, yeah. Electric scooters are substantially more and you're right. Name me a retailer that does not have several electric scooters, at least four or five, four or five. So costs for these retailers. That's not that that's not a problem. It's not the cost.
Speaker 0 00:26:22 And what are some of those other excuses that they're, um, putting are? What are some of those roadblocks and barriers I'm just really fascinated to, from a corporate perspective.
Speaker 1 00:26:35 There's a saying that I've learned, don't take no for someone who can't say yes, don't take note from someone who can't say it. So what the roadblocks, the manager maybe just is too busy. He just doesn't know. He doesn't want to take the time he hasn't heard about it. He never got the email from corporate. Oh, I'll look into it. I'll call you back. It's it's just not, or some areas maybe of the country for some, you know, maybe different cities. It's just not on their radar. They feel like, you know, I don't know enough about it and which is crazy because we've been in the market since 2012, 2012. So again, that's where we need the families to come in and say, here's my child with special needs that cannot use those carts. This is why we need it. Education is key. You've got to educate these retailers. And again, I, so, so many have once they really see it and understand it and get it, they do come on board, but it should not, it should not be a fight. And unfortunately for many, it is a fight and that's wrong.
Speaker 0 00:27:51 I agree with that. And I think that's probably true of all accessibility efforts. It's always a very reactive mindset because it's usually, there's a problem. You either Sue or you try and make change, but it's on you, the community to ask for it and to demand.
Speaker 1 00:28:10 Right. Right. Right. Well, Caroline, Oh, well, and Caroline was, she was around again, eight years old, maybe nine by the time nine or 10 while we got the prototype. So, you know, she can't talk. So she, she couldn't verbalize anything, but we know that she knew what it was. And it was very exciting for us to see her in it for the first time, even though within my dining room, because it was the prototype. Um, but the very first time that we were able to use it in the store, it was, it was very emotional. I will tell you that for both of us, because it was so much work. It was, it still is so much work. And I'm just, I'm, I'm proud of her. I'm proud of what the cart um, does for families. And I know that families are counting on me to continue my efforts, to fight for Caroline's cart until it is standard in every store.
Speaker 0 00:29:07 And so what's next on the journey what's left to do? How many or how many more industries do you have to check off
Speaker 1 00:29:14 The box? You know, it's still advocate ad until every retailer has it. We continue to advocate. One thing that I want to talk about that I think is that, that you could identify with is retailers, restaurants, anywhere we go, they have to level the playing field. It's not a level playing field for the special needs community. So these retailers that are providing all these fun cards yet Caroline's cart is optional. Okay. How do we level that playing field? How do we take a product that is for the disabled and put it on the same playing field as a standard card. That is something that I am continuing to battle even today is level leveling the playing field for the special needs community.
Speaker 0 00:30:05 Is there any push that can be done on the manufacturer and the production company for saying, if you're buying a cart, you then have to add at least one Caroline part kind of like the ADA, right? So what they did, um, they, they, when they made the modification for 2010, they said any new building that is created or any building that is updated, that is older, they have to come up to code. So it's essentially like coming up to code, right? So if a home Depot were to buy additional cards, they then are now required to at least get one Caroline's cart.
Speaker 1 00:30:48 Well, I love how you think. And I wish we could do that. We can't, we have a wonderful manual. We have a great manufacturer, their name they're called Bunzl and then you're in North Carolina. So I would say just about every traditional standard shopping cart you have ever touched probably comes right out of North Carolina. So they have a wonderful sales team and they are out there pushing it. But again, we write, yes. Yay. And we applaud that.
Speaker 0 00:31:17 That's awesome. I'm sure they're helping out,
Speaker 1 00:31:20 But we cannot, you know, we can't make them buy it. Um, yeah. I w I wish we could, because if that was the case, we would be in every store, but I am very hopeful that with people like yourself doing podcasts and parents out there advocating, if we can just make enough noise, I think we can level that playing field. We just can't give up on it. We just, you know, it's going to be, I've been doing this for 19 years, 19 years,
Speaker 0 00:31:50 And still going strong. So you're thinking more than just grocery stores. I mean, you're thinking about like the TJ max is in the CVS is a hundred percent anything with a grocery cart or anything with a basket you're saying anything that you need to buy. So what are some of the other companies that you want to check off the box?
Speaker 1 00:32:14 Well, just it's any retailer. I mean, um, uh, recently I went to a Roth, you know, Ross, I don't think you'll have a Roth. They have shopping carts, they have shopping cards, but that's beyond, they have shopping carts. If you, if your store requires shopping cart, okay. Then they should also have Caroline's cart for your customers that can't fit in your shopping carts. So yes, it's not just the Walmarts and the targets of the world and your grocery stores. It's also, it's the whole retail industry. And that's why we were so excited about Lowe's because Lowe's is a hardware store, you know? So that was such, that was a great, that was a great success for the special needs community. When Lowe's came on board and said, Hey, we recognize, we recognize that you're out there. We recognize that you're in every one of our communities and that we want to help you have an accessible, inclusive shopping experience.
Speaker 0 00:33:15 That's awesome. So another thing I'm thinking about is space, right? So the cart itself, it's a, it takes up a good amount of space. Probably not much more than like a standard cart, but I've done a lot of traveling in Europe and they don't have the space of like a target or a Walmart they're small little mom and pop shops. So have you run into that obstacle of, I would love to have this, but where am I going to put it?
Speaker 1 00:33:42 Well, not in the U S or not in North America. I would say, not in North America. We are Caroline's cart has, um, we are international. We are in Dubai. We don't have a heat. We don't have a huge presence. I think in Europe, because of that, I have heard that now we have a few cards here and there in Europe, but I have seen those stores as well. It is a smaller footprint. However, with accessibility and inclusion, sometimes you're going to have to make accommodations. That's what it's all about making accommodations. So I really don't think that one, any store can say, we simply just do not have the room. I think you make accommodations for that segment of your customer base, which has special needs to find room for it.
Speaker 0 00:34:32 Yeah. And what other advice would you give to the industry as you're approaching them? And, you know, you're, you're pitching your story.
Speaker 1 00:34:44 There's a saying, um, we all know that, you know, you don't walk in someone's shoes, you have no idea. So before I had Caroline, I had no idea what it was like to raise a child with a disability and be thrown into that world. So I asked these retailers just to, for a second, to put themselves in our shoes to, to, to have a child with a disability. And I always have said carpet stores that have said no, or are like, eh, maybe, maybe if they walk in my shoes for one day, their stores would have Caroline's cart. So I do ask them, you know, I try to, you know, put a spin on it. Just kind of tell a story to say, Hey, let me tell you something that you might not know. I don't know everything. I had no idea what it was like to be a mom of a special needs child. So let me just tell you a little bit about my world and that really does start a good conversation. And it's, um, you know, you have to be, you know, you don't wanna start a fight of course, but it really does open the door for open communication about a world. They know nothing about,
Speaker 0 00:35:57 Do you ever take some of these store managers to their competitors who do have Caroline's cards and it's like your competitors doing it?
Speaker 1 00:36:05 Well, I've never taken him there, but I certainly had told them about it.
Speaker 0 00:36:09 Give us to send them some pictures. That's like your competitor Lowe's seems to be doing it. Right.
Speaker 1 00:36:15 Right. So I'm seeing, you know, I have had the opportunity to see the tide change, you know, early, early, early on when it was no, everywhere. I went, my wasn't getting yeses until I got with Tecnam built, who is now Basel. Um, when you get with the right manufacturer that did open so many doors, so I've seen the tide change I've seen, um, the promise card has had great successes. We just have a lot of work to still do.
Speaker 0 00:36:44 Do you feel like we're still, we're going in the right direction with accessibility in this world? What else would you like to change?
Speaker 1 00:36:53 Um, yes, we're going in the right direction, but I think it's going to be a constant battle. I wish it wasn't going to be a constant battle, but because of what I've been doing with the cart since 2012, that's just the reality of, of the world we live in. You know, I just think business owners I'll jump out of the retail world and, and bring in the restaurants and bring in, um, the parks and the community pools. You know, everyone needs to look at their business through the lens of inclusion and accessibility. And that's where people like yourself and a special needs family. We need to stay on top of that. And where there is, you know, w w where it's not there or where we see that things need to change. That's on us to speak up. That's on us to change that.
Speaker 0 00:37:47 Yeah. I think it's, it's important. All businesses need to be looking at that, but I think sometimes to their end, to their point, they don't know what needs to be changed. If, if, if they don't really know,
Speaker 1 00:38:00 You don't know what you don't know. Don't know what you don't know. Absolutely.
Speaker 0 00:38:04 Yeah. I just, in, it's just a constant battle. It really is of pitching away at that iceberg that continues to, sometimes it feels like it continues to grow. You fix one thing and then three more pop up.
Speaker 1 00:38:19 Right. And I do, again, want to point out the stores that do do it right. You know, so many have done it. Right. And it wasn't a fight, but it always seems like for those that make you fight it just sometimes, you know, it does knock you down and you, and you, and don't understand why this has to be a fight. We don't understand why they refuse to level the playing field, but you know what it is, what it is. And that's what I continue to do. And I will always advocate for the carts. Um, I laugh and say, it's my fourth child. I mean, this is what I was called to do.
Speaker 0 00:38:54 Talk to me a little bit about you're going into a restaurant and Caroline comes with you, maybe your other kids come as well. What are those things that you're looking for? What are those things that you point out to managers to change
Speaker 1 00:39:08 Just in a restaurant? So out of the retail world, just for there to be anything. Yeah. Just please start with restaurants. Okay. Well just, you know, Carolyn's in a wheelchair of course, and she's 19. So her wheelchair is rather big. We just, sometimes you can't even get through to the restaurant because the tables are so close. So I wish that at least some parts of the restaurant, or a little more open, bigger areas, I think that, you know, some of the tabletops need to be a little higher, so the wheelchair can go in it and not be stuck out. You know, a lot of times we ask for a table that's out of the way, because no one wants a big, huge wheelchair. You know, we don't want to trip up a server. So we do always, when we go out to eat, which is, hasn't been in a while because of the virus.
Speaker 1 00:39:58 Sure. We do. We do ask for those tables that are kind of out of the way. And a lot of times we do ask the managers to consider a walkway, a walkway area for, for wheelchairs. And what about retail? Well, of course retail is, um, if they have a Caroline's card, of course I use it. If not, that's just a great opportunity for me to say, Hey, you know, what's hard for me to push her in a wheelchair and the shopping cart, you know, at the same time. And that brings up, that opens up that conversation does,
Speaker 0 00:40:34 So does Caroline use a power washer or a manual wheelchair
Speaker 1 00:40:39 Manual? It's cheat. I have to push it. She can not even officially.
Speaker 0 00:40:42 Okay. Um, if you're okay with it, I kind of want to dive more into Caroline's has syndrome Rett syndrome and what that was like, and those who are newly diagnosed, what does the timeline look like
Speaker 1 00:40:56 When Carolyn was diagnosed with Rett syndrome when she was four, again, she's now 19. I had never heard of it. So of course, what do you do? You Google it? And then of course, what articles come up, the worst ones that you should never ever read? So, you know, it's hard as Rett syndrome is, you know, I hate to put disabilities and different, you know, gosh, I wish I had that or wish too bad. It wasn't that you just have to take what it is. You have to educate yourself on it. And you do the very best that you can. Rett syndrome has a very, at least in my opinion, there's a lot of different ranges of it. A lot of red girls walk, Caroline does not walk and she never has Rett syndrome. Girls absolutely positively can learn. They can't speak, but they use communication devices that they operate with their eyes. So it's, um, of course it's a lot of work, not only on the family side, but also in the school systems working to make sure that they learn as much as they can learn and they reach their goals. So it's just my, you know, my advice to parents is just, don't fear it, learn everything you can about it.
Speaker 0 00:42:07 So schooling with Caroline, has that been an equitable experience? Do you feel like she went through good education and what are some of those things that you would advocate?
Speaker 1 00:42:18 Okay. So for the school system or me get them in school as early as possible, Caroline is a, went through the Alabama, you know, we're in public schools here in Alabama. So she was able to start school when she was three, she had school, uh, therapies in the school. We also did private therapies outside. I was always involved. I think that the parents are key to a successful education for their child. I will say that with, you know, I have two typical children as well, that is for a child with a disability. And that is for typical children as well. However, for the child with a disability, you really, really have to be paying attention at the IEP meetings and making sure that your child gets what the law says they can get. And just, I think if the school knows you're involved, I think they're going to see to it that they're, that they did the very best that they can with your child.
Speaker 0 00:43:19 Caroline is nonverbal. I understand. Right. And so how does the community perceive her
Speaker 1 00:43:27 Caroline? We had lived in the same city, her whole life. So it is fun when we went. Yes, it does. Because the kids that she's been in school with in the public school, they know her, that's all cheese that's right. That's all she knows. So I think that that has been a great advantage for her. It's made me feel better that we know the teachers, we know who the next teacher in line is going to be. Um, we see them out at dinner. We see them at the grocery store. So when Caroline is out in the community, it's always fun. And it makes me feel good as a parent, when she has recognized when a classmate will come up to her, or someone will say, Oh, she used to be in my class, or I've seen Caroline in the cafeteria. So that's a great, that's just great for our community. And I think that children with disabilities need to be on the community as much as possible to help raise awareness for, for all that we are trying to achieve.
Speaker 0 00:44:24 And how would someone who doesn't know, communicate with someone who is nonverbal
Speaker 1 00:44:29 Cool. How is, um, like
Speaker 0 00:44:32 To meet Caroline for the first time? How would you instruct me to communicate with her?
Speaker 1 00:44:37 Just to look in her eyes, just, you know, look, look at her and speak to her, you know, not speak about her, not speak to me about her, but to speak to her. You know, that is, that's so important. And you know, again, a lot of people don't know, and I'm glad that we're talking about this because whether the child can respond or not, they can hear you. And that's one thing. I've had a lot of opportunities to speak to different groups. And I always encourage people to say, even if you don't know, assume they can hear you speak directly to them. Yeah. They can understand. Right. And I always tell people she's not going to answer, but she absolutely can hear you. And
Speaker 0 00:45:25 This is Caroline respond back. So I say, hello, Caroline, how are you looking right in the eye? How does she communicate that?
Speaker 1 00:45:33 You know, w we, we say about girls with Rett syndrome that they speak with their eyes. So she would lock in on you. And if you probably spoke like in a silly voice, she would probably smile at you. If you knew, if you knew any lines from Shrek, I guarantee you, she would smile at you.
Speaker 0 00:45:54 That's awesome. And is it, is it common for a rec girls to like, what is their education level? Like, what is their reading level? Are they at on par with their age?
Speaker 1 00:46:07 I mean, of course, I don't know every rec girl, but I'm in so many different Facebook, national international rec groups. And I absolutely have heard of some girls reading on level. So again, I think the learning is depending on where your genetic mutation is, they say that some can learn maybe better than others. Caroline, I will tell you that Caroline is not on a 19 year old level. Caroline does not read like that, but I have heard of girls that do learn to read, to learn, to do math. I don't think that they are ever going to be like age appropriate and going to college. Now I maybe read, maybe there's a red girl that goes to college. So I don't want anybody to say, you know, no, but in the world I live in, you know, there is a learning disability there. And for sure that, that has been the case with Caroline.
Speaker 0 00:47:06 It's just important to educate the public on how to come up to someone who is nonverbal and how you communicate with them. Cause a lot of people don't know. And I used to not know, you know, either the same thing with, if you're deaf and you have an interpreter, you don't speak to the interpreter, you speak to the person. So it's similar to those who are nonverbal. And I think a of people just don't know that
Speaker 1 00:47:31 You don't know. Right. And it's, and, and always makes the parents feel good. I always, it just always makes me feel good when someone is out in public and we'll speak to her instead of ignore her, you know, teacher children to just at least say, hi, hello, how are you? That's, you know, that's not hard. And it's, it's a great teaching tool for your child or your typical child as well. And it always is a benefit for the child with a disability.
Speaker 0 00:47:56 And for Caroline, what does this, could she qualify for a job? Is it sat on her radar?
Speaker 1 00:48:04 No. Caroline could not have a job. In fact, I'm not really aware of any girls with Rett syndrome that are in the workforce. Okay. Yeah. Caroline will always be at home with us.
Speaker 0 00:48:16 Okay. And so what is that like for you thinking about that, you know, as you get older, as she gets older, did it, is their life expectancy shorter?
Speaker 1 00:48:26 I would say yes. Their life expectancy is shorter. You have no idea. I remember when I had to ask that question to her neurologist and he said that for Rett syndrome, this is what I was told years ago. It's pretty typical and normal up until 10 years old. And then anything after 10, you simply don't know. I believe, um, I, I know of a red girl that recently turned 50. Okay. I'm not sure. I, you know, I don't know if any have lived much longer than that. I don't think any are in their eighties or nineties. Brent girls have seizures and a lot of times the seizures will take them or respiratory illnesses. So, you know, again, I've known girls that have, have died at two and three years old. So it really is such a wide range, but you know, it's, again with all the things that they, all the challenges that they have really, I think, you know, I, again, I don't know if any, that had maybe been over 60, 65
Speaker 0 00:49:28 And for Caroline regarding her ability to, so there's, I guess I understand you've taken care of her full time, right? Change your Vader. All that every time is that pretty common for RAC girls is their level of motor skills. Um, they need someone to help them full time.
Speaker 1 00:49:49 Right? Sure. I mean, Caroline, again, I have to do everything for the girls that walk, you know, they're, they're going to have more opportunities to do self care, but I will tell you that one of the major disabilities in red is the girls have no hand function. So that is one thing they lose that. It's just so bizarre when Caroline was around two years old, she can pick up her food. When the regression phase of breast Rhett finished, she could not, she cannot hold anything. She cannot pick anything up. So that is across the board in Rett syndrome, girls, they lose their function and that is extremely limiting for any, I just imagine, imagine that you have no hands and you can't use them. Right. That is what red girls have to deal with,
Speaker 0 00:50:37 But she has muscle. Like it's not a weakness and muscle or is it
Speaker 1 00:50:42 No, it's just part of the disability. It is, you know, she can, a lot of them will, uh, they'll ring their hands. Like you're washing your hands. So it's very typical. If you see a girl, like their hands are kind of pulled in and they,
Speaker 0 00:50:57 Okay. Sorry. Uh, so you're saying so typical of red girls, the hand washing their hands.
Speaker 1 00:51:02 Yeah. The hand ringing it's called hand ringing, hand ringing. A lot of them will play with their hands. There's no function there, but they, and a lot of girls and Caroline used to do this with put their hands in their mouth. And Caroline did that all the time for years. And then she outgrew that. So once you lose the hand function, it's gone. So she still hasn't leave.
Speaker 0 00:51:27 She says she constantly does hand ringing. So there, when the, like let's say she were to have some type of adaptive ability, like an adaptive piece on her arm, like a prosthetic that could allow her like a bionic to pick up food. I just, I just don't know. I haven't seen what it looks like. So yeah. What an adaptive device health. Yeah.
Speaker 1 00:51:49 You know, some girls can use that. And Caroline, when she was younger through therapy would have these big max switches. So they would like for a guest to know, and she would just have to reach out and, and hit it. And it would take her a long time to make the connection, I think like from her brain to her hand to reach out for it. But I am, I am unaware of any Rett girl that has enough ability to like drive a chair, you know, a manual wheelchair. Some might have more function than others. Again, they range. But overall the hand youth is very poor and Rett syndrome, girl,
Speaker 0 00:52:27 This is so fascinating to learn about just, I like learning about different disabilities and diseases to know their progression. So I can, sometimes I can spot it, you know, out in the community. And I'm like, Oh, that's CPU. Oh, that's Oh, that's on us or that's Parkinson's so,
Speaker 1 00:52:46 And I'm sure you've seen red girls, you just, haven't known it, you know, sin and know about it. Right.
Speaker 0 00:52:51 Definitely. Uh, keep that in mind. Did you have anything else to share just in general about, you know, Caroline's cards, Bret syndrome, any advice for parents raising children with disabilities advocacy? You're superwoman
Speaker 1 00:53:07 Super mom. I cough a lot. I hope that we can get the cops out. Just any advice I have is just to take one day at a time. Um, don't Google everything. You know, I that's, one of the biggest mistakes I made is, you know, looking everything up and try to just get a good friend group. You know, Facebook has allowed many opportunities to join these private groups and I think special needs families need to communicate and you need that community. I've got friends with my typical kids, but that's my special needs family. When you're down, when you're in the hospital, they're the only ones that are, aren't going to understand it because I've been there. So I do think that support group of special needs families is critical for every day. You know, just support someone to call someone to log on and just say, Oh gosh, you know, these seizures are terrible today. And to have somebody say, Hey, I know, I understand. So, so, so get with that
Speaker 0 00:54:15 Community, like a Facebook community.
Speaker 1 00:54:18 Yeah. I mean, I'm in an international rep group, I'm in a national rec group, Alabama red group, and it doesn't just have to be Rett syndrome. You know, when I say, get that, get in a special needs community. That's with anyone that has a disability, you know, it doesn't have to be just Rett syndrome. But I think that it's important to me to surround myself with families that are walking the same path.
Speaker 0 00:54:45 Sure. No, the support system is so important, has been really helpful for me. I'm in tons of muscular dystrophy, Facebook groups and channels and stuff like that, as well as muscular dystrophy in general. So my, my particular type of muscular dystrophy and then just all the muscular dystrophies and then just a lot of disability groups that are, you know, disability traveled severely this disability, that, so it's just really great to have that supportive community. And you kind of on that way,
Speaker 1 00:55:17 Somebody that understands and is walking the same road, you're walking, we're all in this together
Speaker 0 00:55:22 For sure. Well, thank you. Jerriann so much for your time and your expertise and I really appreciate it. So thank you for all you do in the community. And so go ahead and give your plugs. Where can people find you, your shopping cards, all that?
Speaker 1 00:55:40 Well, the shop. Okay. So on our website, which is airlines cart.com, we have the store locator. So if you're like, if you're in Georgia, you can click on the state of Georgia and you will find a list of the stores that have Caroline's cart. If your store doesn't have it, there's the information on the website of where to call a store manager to call. So, you know, use your cell phone, get out there, you know, pull us up, show pictures of it. If the store manager, if you're somewhere and they're like, we've never heard of that. We everybody's got a smartphone and you can pull up a picture and you can just show it to them. And that's how, you know, then you can advocate for it. And I'm going to point out to you that we have had tremendous from families that don't have special needs children.
Speaker 1 00:56:28 You know, I hear all the time, Hey, I was at X store today. I don't need it, but I know there's people that do need it. So I asked for it today. All right. I really appreciate those families that are advocating for us and they don't even need the card, but they know that there's people in their community that do need the cards. That's awesome. And you're on Instagram, Instagram, Facebook, Twitter. Awesome. Yep. All Caroline's card Caroline's card. Well, thank you. I appreciate it. All right. Thank you so much. Take care. Thank you friends for listening. Please rate and follow this podcast or text card at (470) 588-1215 with comments and suggestions tune in next week for another disability topic.