Speaker 0 00:00:08 What's up everyone. Welcome to the finance for physicians podcast. I'm your host, Daniel Raimi. Join me as we dig into what it looks like for physicians to begin using their finances as a tool to live better lives. You can learn more about our
[email protected] let's. Jump into today's episode. Hey guys, what's up. I appreciate the topics suggestions today. We're going to be getting into one particular request. We had to cover planning around when your child or children have a disability. And so I thought a great starting point would be to, to share or have someone share their story, uh, and experience around that situation. So I've brought on Laura Yoast to talk with me today. Laura is, uh, married to Chris. Chris is a internal medicine physician and, uh, she shares their story around, uh, their daughter Scarlet and how down syndrome has affected their life and how initially she had some, uh, some severe and some, some concern for the unknown and how in reality, how it's played out.
Speaker 0 00:01:20 It's been all positive, all, all good. It's actually been a blessing to them and has made them better overall. And so I think you'll enjoy hearing her story and, um, learning from her perspective around that sort of circumstance. And, uh, we'll also get into a little bit more of the planning, uh, mechanics that, that might come with a situation like this in a future episode, there's some strategies to consider considerations that you might be thinking about if this is your circumstance, but today we're going to focus in on Laura stories. So without further ado, let's jump into today's episode. Hey Laura, thanks for joining me today.
Speaker 1 00:01:59 Hey Daniel, thank you for having me.
Speaker 0 00:02:02 Yeah. So, uh, we were just talking about your lemonade stand experience yesterday. I, I pass Laura. Uh, we were going to dinner or a lunch after church yesterday, and I thought I saw Laura out, uh, rocking, eliminates stands. So tell me about that. Was that, was that you and what were you all? What was the story?
Speaker 1 00:02:24 Yeah, so I have four kids and two of my daughters, like the neighbor has been talking about eliminates Diane for weeks and weeks and weeks. And they've been playing in when they can have eliminates then. So the mom down the street and I have this cute little stay and she got it all set up, then it became teamwork. And so many kind, people just stop by and with eliminate and give a donation. They're like, what are you raising money for? And the little girl was like Allah modeling clay. The mom was like, and we're going to give a portion to DSEK, which is the down syndrome association in central Kentucky. So the girls learned teamwork and they learned how to give back to our community. Nice.
Speaker 0 00:03:03 Yeah, I'm going to use the excuse so we didn't stop my excuses. I was not driving the car.
Speaker 1 00:03:12 Uh, I will talk to Alison.
Speaker 0 00:03:16 Uh, so anyway, next time we'll stop.
Speaker 1 00:03:19 Yeah, I like it. I'll do it again. Yeah.
Speaker 0 00:03:22 Good, good. Cool. Well, uh, so what we're going to talk about today, I would say you guys are living a very rich life. You have a lot of, a lot of good things going on and you've had several particularly special or, you know, blessing experiences along the way that we were going to get into today. So one of those in particular is Scarlet. So we're going to talk, hopefully get into a little bit more about the, the story, um, and that blessing in particular, before we get into that, can we kinda wind back the clock a little bit and maybe talk about what the Yos family life looked like before Scarlet?
Speaker 1 00:03:59 Yeah. So yes, Scarlett is our youngest of four. And I remember before Scarlett, like just joking around with math friends about, you know, how easy it is to have babies. And not that it's easy, but like I'm grace, the chaos, she has very typically developing siblings. Actually. They're probably more on like the outside. So like we've never had to work for anything. Like it's just been using them the preschool, they come home, they're starting to know how to read. One of her sisters like learn how to read when she was four, when we were teaching big brother, how to read. So like, everything's just been pretty like normal or more advanced for her siblings. And it was just a very, like, do whatever we want whenever we want. And we didn't really have to think about like school, you like, Hey, can I come to school?
Speaker 1 00:04:49 Is there a spot available? You give some money, you drop off your kid. Um, and life is very different when your child is different. So Scarlet has down syndrome. And even like the things that have been hard, like we, she is like amazing. And we're so happy we have her, we went and change it. But it's very interesting how, like you said, she's a blessing. Other people, they don't mean it, or I don't think they mean it, but they would be like, oh, well, poor you like, you have a child with down syndrome or what a cross to Bayer. Like, that's something that people have said, yeah, there's challenging challenges, but they're not her. It's more the world we live in. So her having down syndrome is not really that big of a challenge, but people thinking certain things about her because she has down syndrome like that she's not able or capable or like things like that are more challenging, but yet she has to work harder, but you help your kids do what they need help with. Like, that's just part of being a parent. So that part, you know, there's challenges with it. But the hardest part is more of not having as much support as you would think. Looking from the outside before we have.
Speaker 0 00:06:08 So Chris is a physician, you were a math teacher, right. Dart and call it a day taking a break.
Speaker 1 00:06:16 So I was a math teacher before I had kids. And then I became a stay at home mom. When I, after I had my first set up, finished the school year, um, a school approached me and asked me if I would come teach this past year. And I said, well, as long as my kids are settled, I'll do that. And they had never had a child with down syndrome at their school. And I said, well, can Scarlet come to school? And I said, well, our school's full. And I was like, well, if a spot that comes available, can she come, oh, well, it's definitely worth the conversation. If you work here, that is a step in the right direction. And, or like coming to our school, which wasn't exactly right. So that's coming to an end. Yeah. Gotcha. So I just said that I don't participate in any spaces that she is not only welcomed but wanted, so I will no longer work.
Speaker 0 00:07:10 So let's go back to, so everything was, it sounds like you have kind of a pretty normal, uh, life and going back to the point where you're expecting Charlotte and she's, at what point does the do things start to get, to seem or feel like maybe things are going in different directions?
Speaker 1 00:07:33 Yeah. So at our 20 week ultrasound, my husband went with me to the appointment. Every like thing, like fine. We found out she was a girl. He went on to work and I'm at the doctor's office and they say, this looks good. This looks good. This looks good. And they're going through the list. And they're like, oh, by the way, she has an echogenic focus. It's a little bright spot on her heart. I shouldn't mention some babies with down syndrome had this, but typical babies have on two bull rate ultrasound at 35 weeks to see if we see any other markers. I was offered blood work at the time that I knew that I went and changed my pregnancy due to blood work or what it said also don't like needles. And she was my fourth kid. Like we've already done this three times. Like her sister before her, they said she was too little.
Speaker 1 00:08:19 And they took her early and she was a whole pound bigger. So I just wasn't super concerned. Um, and at 35 weeks we re ultrasound and there were no self markers for down syndrome. So like at that point it was totally off the table. Like we didn't think she would have it. We didn't really think about it and worry about it. And then whenever she was born and they handed her to me and, you know, I hugged her and kissed her and all those things. And I passed her off to the nurse to get cleaned up. And I looked at my husband. I was like, do you think she has down syndrome? And he said, maybe well, he's physician. And unfortunately he's always right. Unfortunate for me because that means I'm wrong, which isn't quite as that trend that he said maybe. And I knew that maybe yes.
Speaker 1 00:09:08 So I asked the nurse, do you think she has down syndrome? And the nurse looked at her for like three seconds and was like, yeah, yes, she does. And I was like, oh, and I didn't know anyone with down syndrome. So like, for me, what I knew before her was it was this scary, bad, hard thing that you don't, you have all your babies before. You're 35. So your baby doesn't have down syndrome. When in reality, I just didn't know what it meant to have it yet to have a child with down syndrome because she's not scary or bad. She's actually pretty awesome. And she makes our family better.
Speaker 0 00:09:45 So you, the initial feelings that, that second that you realized it, which I guess first of all, so I have a younger brother with down syndrome and autism. I don't know if we've talked about this, but, and I was younger when this all happened, but I think it took a while for my, um, my mom to find out. I mean, maybe they were suspicious of it, but it felt like it was kind of extended. Maybe they didn't, weren't ready to tell her. I don't know. But it sounded like you found out like very, very fast.
Speaker 1 00:10:15 Is that normally how it works for a birth diagnosis? I found out really fast. Um, a lot of people, maybe 50, 50 find out, you know, at the time, I don't know the stats. We have to look it up. I know someone who's like the baby was in the NICU for months and I didn't find out their baby had down syndrome. So they were like six months old. So it really, you know, it can vary. Um, I think the fact that on new to ASCE made it a little bit different. Um, and one thing that was interesting is like, my OB couldn't tell me, even though she delivered my child and before she was born, she could say, we think your child has down syndrome. Once she was born, she wasn't allowed to tell me that she has down syndrome, even though she suspected it, she had to call P and get someone to Pete to come down and talk to us because she's not a pediatrician. It would take until, you know, a pediatrician came down, Wilson, salvage, questioning it, someone faster that you're there for three days. I don't know. Yeah.
Speaker 0 00:11:14 So what were the, some of the initial feelings? It sounds like when you found out there was a little bit of, uh, you know, challenge dealing like it's
Speaker 1 00:11:23 Oh yeah. I mean, I thought that like my life was over my kids' lives were over. Like, I felt so guilty for like allowing her to have down syndrome, which I know makes no sense. But as a parent, you can find ways to like, learn yourself. So like, I felt guilty for allowing her to have down syndrome. Um, I like worried a lot about her siblings. So at this time her brother was in kindergarten and she had two little sisters in preschool and all I could think was, oh my gosh, will people be mean to them because of her? Like, will they get left out because she's different. I'm like, what does this look like for our family? How's it going to change it? Um, like where can she go to preschool? Which, you know, sounds silly, but it actually has been a really big challenge.
Speaker 1 00:12:10 So even though it was kind of a silly worry at the time, her going to preschool has really been a challenge for our family. And she's four and she's potty trained and she's nice and she's kind, and she's lovely. Hey, but because she has down syndrome, people automatically think that, oh, well, she's going to be hard. And we can incorporate her in our class with, she incorporates in our family just fine. She does everything, her siblings do, you know? And I'm one parent. I take all four of them to the pool by myself and she is fine and she is healthy and she's caught in the whole time, you know? So that, yeah, I really worried, Ooh, I worried about like our friendships, like I'm, uh, like I started younger as a mom and that was intentional because I wanted a big family. So a lot of my friends, their kids that are my kids' age, they have some older kids.
Speaker 1 00:13:02 So they were finished. I'm like, not only do I have the youngest kid, but then I have a kid who's different. Like, well, my friends still want to be friends. Like, and it's all silly. And it sounds silly now, but, and then health wise, like 50% of babies, but down syndrome have a heart defect. So like one of the first things we did were like, how's her heart is her heart healthy. And we had like echo in the hospital and thankfully her heart is healthy and we didn't have to endure, you know, heart surgery, which many of her friends have had to do.
Speaker 0 00:13:34 Yeah. It, so it, and I think that's what happens when you get like big time news that's especially unknown or has these cultural misconceptions, you kind of go right down the path of like worst case scenario, then you start getting into the fear world or whatnot. And it sounds like that's kind of where you went with it. And so what was it like? Um, I know that things have changed dramatically in your experience. You've kind of already alluded to that, but what was it like early on, like, you know, first six months, or I guess how quickly did your perspective of the whole thing changed from what it was like initially to kind of a complete 180? Yeah,
Speaker 1 00:14:21 I think about the second day in the hospital, I had a sister who was texting him. We're praying to God that Scarlet won't have down syndrome, you know, dah, dah, dah, dah. And at that point, like I got really defensive and it's like, so you think she's not good enough because she's good enough for me. She's gotta be good enough for you. So like at that point, I pretended to be strong and to be okay and all that. So it was, you know, I told him our family, I'm like, you know, she was made this way and if she didn't have down syndrome, she be a different baby. So I need you all to be where I am. And at this point she deserves to be celebrated. Like her siblings were, and that's what we're going to do. So we are going to celebrate her.
Speaker 1 00:15:06 That's all we're going to do. You know? Um, I had some girlfriends who thankfully had had experience with individuals with down syndrome and they came to see me at the hospital. And instead of being like, oh, well let me see her markers. Or, oh, she doesn't look like she has down syndrome. They were like, let me hold that baby. And like, they just let her be a baby. And it was probably like the greatest gift they could give me. So I started pretending pretty quickly that like I was okay, but like every night I put her to bed and I would like kiss her. And I would read online and research as much as I could about down syndrome. And I would just tears rolling down my face to the point that a few weeks. And my husband's like, do I need to get you help?
Speaker 1 00:15:49 And almost like, I just need to like learn and I need to find other people like us. And I need to figure out what to do. Like, I don't care that she has down syndrome, but I want to make her have the best life I can help her have. So what do I do? How do I do it? Um, thankfully DSAC, um, they have the down syndrome association of central Kentucky. They have like packets that they leave at the hospitals and we got one of those while we were at the hospital. So I had some books that I could read and learn, and I had a registration form so I can tell them that I existed. So once I like joined the Facebook page and other moms who had kids close to my age could reach out and we could be friends and I could just see like, oh, that family looks like our family and they can do this.
Speaker 1 00:16:35 We can do this. You know, and just knowing that we weren't alone was really helpful. And then I read a book it's called the lucky field and this mom who struggled with infertility and she was adopting a child and she paid lots of money to go through a private agency. So she could get a healthy child that she ended up choosing to adopt a little girl with down syndrome and just her perspective and how she felt like this was a gift from God. And he wrapped it up in beautiful paper and put a big bow on it. Like, how can I say no to this? Um, that really helped me like shift my thinking and a Scarlet is a gift and we're going to treat her like a gift and we'll help her along the way. Um, but if I don't let others know, she's a gift and they think she's a burden and she's not a burden. Does that make sense?
Speaker 0 00:17:30 Yeah. Yeah. That's just a completely different perspective. And I can see where you go down the path. Probably most people start out on the path of burden and challenge and, but you flipped totally the other direction to the blessing. And it's rewarding. I S I was reading an article. I think you contributed to it or wrote it about your story. And you said she's made your life richer and fuller. And I thought that was a kind of a good summary of what's. What does that look like though? I mean, what is a richer and fuller love look, life look like for the Yost household.
Speaker 1 00:18:07 Yeah. Um, yeah, richer and fuller is what I always tend to like fall back on. And I don't know why, but just somehow, like she does, she makes it richer and fuller. So of my kids know sign language because of her. And I think that's really cool. So like her eight year old sister is like at school teaching other kids sound language, um, she's at gymnastics, she's teaching other good sign language. And I just think that's really neat that because her, like, we've been never know sign language, if it wasn't for her, I mean, we would know more and all done because people tend to teach their babies that, but I mean, we know more than 200 signs. Um, and I think that that's really neat. I also feel like Scarlet, like attracts people to us. Like people are attracted to her and like, they like want to be around her and learn more about her and like kids, adults, like people of all ages, like on the playground, she's sometimes the most popular kid.
Speaker 1 00:19:03 And I think it is so funny and so cute that because of her there's friendships that we would have never had, and it has helped shift like our perspective and our way of thinking. So, you know, I had these typically developing kids and they're more on the gifted side, her brother's in a gifted program. And sometimes you think bigger, faster, stronger, like, okay, let's, you know, educate you. Let's make sure you have a great job. Let's make sure you have a ton of money, dah, dah, dah, dah. But that doesn't always lead to happiness. So it's like, okay, let's have a very fulfilled life. And I mean, hopefully some trips to Hawaii are sprinkled in there and you know, that they are successful, but more than them being successful, like I want them to be happy hind humans, you know, and if they're happy, calm human, hopefully the successful come with that. But instead of just thinking, okay, you have to be the smartest kid in the class. You have to be the hardest working kid in the class. Well, I also want you to be the kindest pit in the class, and I would rather, you be the kindness than the one with the best grades.
Speaker 0 00:20:12 It's interesting that you bring those up together as kind of like competing interests a little bit. Yeah. It's like the American dream, I guess, is winning. You know, you could say it's a power. Capitalism is a lot about like eating the competition. Um, and the problem with that, or the downside of that is eating someone else, the person there's other people involved in and they have feelings too. So how has she been able to help you with that? I mean, that, that is a interesting thing to say about a child teaching parents, how to I have kids. So I kind of get that. They teach you in little ways, they sprinkle it in and they're a, or they're just a mirror to you. Sometimes they just show you kind of what you're doing that you realize is ridiculous. And, but what does that look like with her?
Speaker 1 00:21:08 Yeah, I think it's really just helped me have, like, everyone talks about, oh, you want to growth mindset. And they're like, I've never really thought about that. But like, I really like for myself and my children and my family, we're very growth mindset people. So like my daughters are gymnast and they're competitive gymnast, but I don't care if they win and maybe I should because the peer to peer their kids usually, but it's like, I don't care if you win. I just want you to be growing and learning. So like, I want your hand stand to be better than it was last time. And like, even with Scarlett, like, I don't care if she's the most successful person with down syndrome. And those are the people we tend to hear about like the ones that graduate from college or do a triathlon or, you know, whatever she doesn't, I don't need to put that pressure on her. She just has to be harvests and she has to keep learning and growing. So even if that's at a different right than her same age peers, as long as she's learning and growing, she is succeeding because she's making progress. Does that make sense? Yeah.
Speaker 0 00:22:10 So we, we talk a lot about money on this podcast and, and how it kind of ties its way into all sorts of things. And it does seem to tie its way into everything, but I think there's a big difference between money being the focus and life being the focus. It's kind of like you, I notice people where money is the sole focus or, you know, winning it's kind of goes along with the whole, when you brought that up, it reminded me, it's like winning money, power, all that kind of goes in with one category and then living an enjoyable life or love, I guess, would be like loving your neighbor and living, living a good life is kind of on the other spectrum. And it's interesting that sh she has helped you kind of move more the direction of the ladder. Right?
Speaker 1 00:23:04 Well, and I mean, the whole point of money is to make your life better and easier. And you know what I mean? Right. So the point of money to me, you know, your life easier and better, and you know, all of that stuff. But also I, you know, I have had a very privileged life. So for me, money, like I've never had to worry about money. So I mean, it is a big deal because we need money to live and survive and all that, but I've never had to worry about it. So I think maybe I see it differently. I don't know.
Speaker 0 00:23:41 Yeah. Well, you have, you have lots of, uh, with good financial position that gives you lots of different choices. And in, I know it's a, you, we had talked before about this and with children and as a parent, you want to give them, you know, all the best of everything and take the best care of them and put them in the best position to succeed. And, um, you're gonna, if they need something you're going to want to try to provide it. And you had mentioned, um, therapy and, and, and, and, uh, and, uh, physical therapy, speech therapy, all these different costs and, uh, things that have come along and that being sometimes a challenge. What does that look like for you? And what does, and you said insurance does not cover it, correct.
Speaker 1 00:24:27 Right. So, um, from birth until three in Kentucky, we have a thing called first steps and they'll offer like early intervention. So Scarlet was able to have speech PT and OT through first steps, but it's only a certain amount of minutes a month. So you have to kind of play with those, like which one is most important, and maybe we'll do an hour of speech and then 45 minutes of PT and 45 minutes of OT. So you have to kind of play with those numbers to get all the therapy in that is recommended for your child who has down syndrome. Um, but then once they turn three, they're cut off from that. And they're sent to Fayette county public schools and they can go to preschool. And while they're at preschool, they can have therapy. So I think Scarlet's plan originally was 20 minutes of speech either once or twice a week, and then 20 minutes of PT and OT once a week.
Speaker 1 00:25:24 So it's significantly less therapy. I'm not there for it. Um, within the public school, since, um, all the kids are on an IEP, they won't let parents like just come in and volunteer. So how your life can just go to school and volunteer and help with the kids. And like at public school, I'm welcome. Let's have a month first story time. And that's the only time I'm welcome in her classroom because they say the other kids have an IEP and they're like identifying who those kids are. And I'm like, I'm going to see on the new year, but, but, okay. Um, so significantly less therapy through Fayette county. And then when COVID happened, there was therapy via zoom. So we're talking about my three year old physical, yeah. Physical therapy, speech therapy and occupational therapy were all offered via zoom during COVID. And I, you know, played the game for awhile and we tried it and we get it until summer.
Speaker 1 00:26:23 I am, when school was starting back, I was like, we will not do this. We all feel like failures. It is a waste of time and energy. You want my three-year-old? Who can, who has speech and language delays to participate on a computer for therapy? Like that's not going to cut it. And I begged and asked and wrote emails and nobody would do anything about it. So we ended up doing therapy privately. So the problem with private therapy is what are there 52 weeks in a year, all right. There's 52 weeks in a year. And we get 42 visits with our insurance to cover all the therapies. So then which one do we choose? You know, so we don't, we have about a third of them out of therapy, actually less than a third of the amount of therapy covered by insurance that we need.
Speaker 1 00:27:13 But if we weren't successful people, then as soon as she was born in the hospital, someone would have set her up or a medical card and then she'd have all our therapy paid for. So, but since we don't meet that criteria, now we're at the place. Like we don't have enough money that we can pay cash for therapy, but we're not poor enough that we qualify for help. So what do we do so they can choose which one's most important. And it's different depending on your season, a lie, where she was walking, it was PT. And now that she's walking, it's probably speech. So she can communicate with her teachers and her peers. So, yeah, that's a challenge for sure.
Speaker 0 00:27:55 And it's like a challenge of, um, upper, I guess, an upper middle income challenge. I guess if you had a very, very high income, you'd be able to afford whatever, versus if you're low enough income, you get the benefits, the government provided benefits, kick in and cover,
Speaker 1 00:28:12 Well, the amount the insurance company pays versus like, if you're private pay, those prices just skyrocket. So like maybe the insurance will pay $50 a visit, but for me it'd be 300, you know what I mean? Like, it just it's like, well, okay, I'll look at some things or therapy and we'll just do it at home. You know what I mean? Like for $300 a pop, like that adds up pretty quick.
Speaker 0 00:28:36 Yeah. It's, uh, it's, uh, expensive. So you just have to kind of prioritize and pick, pick what's. How do you feel about your multiples siblings and equalizing? And I feel like there's a lot of, um, parents and families, and this is more from me working as a financial planner. I see their money stuff and I get to see them how they handle money with, uh, with their family. And there's often most common, there's this tendency to want to make everything equal, uh, financially for all their children. And I kind of get it, I guess, uh, you know, as a parent, you want to be equal, but does that, how do you feel about that? And is it, does it, do you have the same feeling there or do you, um, is there, and so another, just little side note on that is my sibling and my parents. I'm like, you all pass any inheritance, all go to him. He's we don't need help financially. We're good. But I still think they feel that they want to kind of equalize
Speaker 1 00:29:36 Things. So do you know that I have a sibling with a disability as well? Cause you probably saw them at the gala. So whenever I was in second grade, my 16 year old brother was in a car accident and he has a traumatic brain injury. One thing that we talked about before this was that like you, whenever you have a disability to have those government benefits, like you can't have any money. So like a lot of individuals, but disabilities, they have to have like a third party trust. So like Chris and I cannot just give money to Scarlet because she'll lose all our benefits and she may or may not have a job that provides insurance and all those benefits. And we can't think on that. So she'll have to have a third party trust for that inheritance. But, and I also think like one thing, and I don't know if you've ran into this, Daniel is like, they teach these individuals with disabilities.
Speaker 1 00:30:26 Like, oh, you can't have more than $3,000 in your checking account or you don't qualify for more benefits. So we're teaching people to be irresponsible with money. Like instead of saying, Hey, we're so proud of you for saving your money, still get your benefits. It's Hey, you were so responsible that we're gonna quit give any benefits, which is just the wrong way to teach these individuals and huge problem. But, you know, I guess I haven't thought that much about Scarlet and I have thought about my sibling and he needs the money more than we do. Like, yes, it would be fun to inherit some money. Let's be honest. Like that would be a lot of fun, but we're talking about his basic needs. We're talking about him having a home and having food, him having clothes. He ha he needs a caretaker. So he needs that money more than Chris and I.
Speaker 1 00:31:23 So we're going to let him starve to death while we go to Hawaii. Like, it makes no sense, you know, for my own kids, you know, we have talked about, I think I can't, I can't remember with our lawyer what we did, but she gave us a lot of guidance. You know, this is what she would typically need. And it might be like she gets 50% and the siblings split the other 50%. So I do know that we set it up that cause she needs more, you know, her siblings, they can, you know, they're going to be able to provide for themselves. And she might too that we can't think on that.
Speaker 0 00:31:59 Yeah. It's interesting that these siblings it's, it might almost be even easier for the being a sibling thinking of it, as, you know, they need all the help they can get versus a parent. It's almost, it's harder to think that away because you assume that you, you know,
Speaker 1 00:32:15 Well, I want you to know that you, that they love you and they appreciate you and all that and all the things you've done for your sibling. Like, let's think about that. I don't know. Yeah. That's hard. Yeah. It's tough.
Speaker 0 00:32:28 So what about education? You had mentioned some challenges with that and it sounds like, um, you've had challenges there. So tell us a little bit about what that looks like.
Speaker 1 00:32:39 Yeah. So Scarlet is for a four year old and education has already been a huge, huge challenge is probably our biggest challenge. So, you know, I talked about lately per steps, and then you get thrown to Fayette county, public schools. And like with first steps, it's like, all these therapists become your friends and like, they come to your home to do therapy. And like, you know, they're on Scarlet's team. Like they are 100% teen Scarlet have your back, no matter what. And then you go, I went to our first meeting for Fayette county and the girl calls and she's like, Hey, we have this meeting set up. Can you come? It's like, mid-July, I'm like I have four kids. Do they come with me? Because her steps, they just came to my house. My kids are running around. We make a plan, we go for it.
Speaker 1 00:33:27 So I showed up to this meeting with four kids because the lady said, I'll do whatever works for you. Well, it should have been, if you have someone to help you with your kids, you should get them to help you. But if you cannot, we'll make it work. But I didn't know that. So I show up with four kids and we start working on her IEP, which is an individualized education plan. And um, it's like how they make sure kids with disabilities are like thriving and growing throughout the process of their education. So the first meeting is about like all these assessments and where are we going to SS, you know, like PT, OT speech. And they're like, Hey, what about cognition? Let's you know, do you want to do that? And you're like, Hey, you want to do another test? Let's do it. And I have four kids in a GM pushing each other in a rolly chair and I'm like, sure, let's do that.
Speaker 1 00:34:18 And I walk out to my car and I'm like, I'm an educator, like looking into her cognition. This could be a problem. And what happens is, is they evaluate cognition and then they put a label on your kid and then your kid's stuck in a separate classroom. Well, all the research says is the best education for kids with disabilities and their same age peers is inclusion. So that would mean instead of Daniel, I don't know if you grew up how I did, how I grew up was all my typically developing peers, but you're in a classroom. All the kids who were different were in a separate classroom, down the hall. Is that how it was for you? Yeah. Yeah. So that's how it used to be that now all the research says is for kids with disabilities to grow and for our kids without disabilities to grow all these kids should be educated together. And if our kids with disabilities need help or support and to descending them away, you bring teachers in to help them. And that if I let them give her this cognitive assessment that takes away the possibility of inclusion and it's not supposed to, but it does.
Speaker 0 00:35:27 So they base it on academic and not disability.
Speaker 1 00:35:30 So what they'll do is they'll give her a label. So right now her label is a developmental delay, but if let them give her that test, and then he would say she has a mild mental disability or a moderate mental disability. So all these different labels and they stayed the label, doesn't drive placement like where they are at school. But ironically enough, one of my friends, her son's trying to go to kindergarten and because he has a mild mental disability, they were trying to put him in a self-contained classroom, even though he had never stepped one day, one foot in the class or in the school, in the classroom, anything as a kindergartner, they're trying to put them separate. So they say it doesn't drive placement, but it does. So that was a challenge just like navigating these meetings. And I quickly learned, like, I will never go to a meeting without someone to help me because to take away me agreeing to do that test, which they didn't perform just me saying they could do it to emails and emails and emails and meetings with like the director of education for Fayette county.
Speaker 1 00:36:34 Like if listeners have a child with a disability and you're starting public school, have an advocate go with you, someone who has done the process before to help you navigate what to say yes or no to. So it quickly went from like with first steps, we were a team to, I feel like with Fayette county, Chris and I are and Scarlet's team and our advocate. And I don't feel like the school's on our team, which is sad because they're the people who are going to lift her and educating her. And I want them to be on our team. And like even one lady who was at the meeting, she's a preschool teacher, but not Scarlet's. I had to like really fight and be like, you will not give her this test and I will not send her to your school if you do. And then they asked me 15 more times, well, can we give her the test?
Speaker 1 00:37:22 No, you will not. You may not do it. And as the administrators walked out, the person who was the preschool teacher said, you did such a great job, like standing up for your child. And I'm like, why aren't you helping me? Like, you know this better than I do, but she's got to keep her job. So public school's been kind of a challenge. And then we tried private school. And as I said at the beginning, like I was given that impression that she could come to school, if a preschool slot became available and one became available, I was told she could come. And when I checked in to see when she could come in tone totally changed. And a couple minutes later when I said another school, so she can come. And if you do not allow her to come to this school, I will not work here on my children will not go to school here.
Speaker 1 00:38:13 They were ready to investigate if she could come to school. So they formed a committee that people on this committee, I gave them the names and numbers of people to talk, to, to decide as Scarlet was allowed to come to crisp. And it's like, she's potty trained. I'm asking for her to color. I'm walking a lot. Like I'm not saying that she needs an assistant. I'm not saying you all have to do any accommodations for her. Just let her come to school and they wouldn't let her. So she learned through Fayette county on zoom for 367 days. And that was her preschool.
Speaker 0 00:38:49 Yeah. That's tough. I think the private school setup is some people maybe think that's potentially a better solution, but you know, I, they have, at least the private school I've had experience with. They have like, it's a lot more like the wild, wild west. Like they don't have very many rules and regulations. It's a little bit more opinions and feelings, you know? And that's what I learned about private school quickly is I was amazed how much, um, I guess, opinions and feelings drive the ship in a lot of major decisions. And sometimes those, uh, don't correspond well with what you're after. And it sounded like in this situation, that was, and it's sad because that's kind of goes against the mission. I think, of the, of the school or at least that's how I feel is it goes against their
Speaker 1 00:39:43 Mission. So the school had never had a top of down syndrome. Although other schools like it have, and after they investigated for a few months, they said she could come in August. So she is allowed to come next year. But the whole year she was on a computer that I was begging them for her to come to school. She wasn't allowed though she is welcome to go in August, but it's like, I've already had, like, you've kind of proved that she's not welcome by the fact that when she needed you most, the door was shut.
Speaker 0 00:40:15 What do you do in that kind of situation? Do you? Cause I can feel like two different potential feelings. At least I would feel as like charged forward would be one route and be like, I'll show them, um, potentially or, um, you know, I'm out like,
Speaker 1 00:40:30 Yeah, it was really hard to decide what to do. And actually, I feel like most of the administrators there wanted her there, but there was one that every time I talked to her, she would say things that made me feel like she wasn't welcome. And as you said in private school, a lot of times that people in their feelings strive things. And I felt like with that person in a position of power at this school, that it wouldn't be a good experience. So I'm not saying we will never go back to that school. Um, but I think things would have to change for us to go back because now there are great teachers, Eric great families, there are great administrators. You know, one of the ladies who like helps the kids to do have some learning difficulties, like he was excited at the possibility of my daughter being there.
Speaker 1 00:41:20 So it wasn't everyone, it wasn't in the whole school, but it was some people in the position to make the decisions. And I just could not commit to investing more time and, and money. And for me to work there, when I felt these feelings that we were not welcome as a family part of my family was welcomed. My kids who tested in the 99th percentile are welcome, but my child who, they don't know how she tests, they had never seen her IEP. They actually had not really even seen her because it COVID, they just assume by her diagnosis that she's not capable, able, and worthy to be there. I can't be a part of that. And I do kind of wish I'd be like, okay, let's prove to you that you're wrong, but she's not the type of person that I feel like, whatever admit me in wrong. And I'm just,
Speaker 0 00:42:16 Yeah, well it's either ways challenging a situation. And I imagine that is part of the challenges that, um, come with with, um, in the unfortunate, because she's super normal. I mean, like, and even if, um, she's just a great kid and you know, well behaved and better behaved than my kids and, you know, she's uh, does, she's just, and sounds like she's smart and all that sort of thing. I think in my private school experience with my children, I wish they had more exposure to more diverse. That's the downside to one of the downsides I feel of private education is I wish my kids had a more diverse experience with other kids. And at this point it's kind of not very diverse. That's good for them.
Speaker 1 00:43:07 People like you need to tell your school that that's what you want and that you would support like the, like that you would support that in the budget of the school. Cause like I have a friend and she hurts then has gone to private school. And at first she tried to fundraise for it and that didn't really work. And she said, the only way it's going to be successful is if we get our schools to say, we wanted in your working budget to have the support needed for kids with disabilities. So your school needs parents like you, who don't have kids with disabilities to say, Hey, we want children with disabilities included in our school. And we would love for you to put a portion of your budget towards the support or educating the teachers, giving them the professional development, they need to support these kids.
Speaker 0 00:44:00 And that doesn't exist in those private schools.
Speaker 1 00:44:02 No, I don't think it exists in any private schools, the private schools that I know of that kids with down syndrome attend. Those parents actually have to pay extra money in tuition to cover the assistant at the school, says the kids need that the parents don't necessarily think they need. And that's another reason why I didn't say yes the next year is because I was whole about that. And I was like, this is going to be a money pit. Like you all are going to ask me to pay more money, which is actually against the law. Um, if these schools like receive funding from the government, which most probably do because of COVID, then it is against the law for them not to accept kids with disabilities, as long as they can reasonably accommodate, then Scarlett only needed a stool and I was willing to bring it. So, and to ask them to pay more money intuition, that actually is against the law as well. Yeah,
Speaker 0 00:45:00 That sounds crazy to me to request that I'm surprised that
Speaker 1 00:45:05 Was easy. I think it started as parents saying, I want my kid here, their siblings are here, you know, I will pay for an assistant. I will do anything to get in the door and then it became the normal and you know, it's not what you're supposed to do, but it's, what's been done. Yeah.
Speaker 0 00:45:24 So if I'm a family that maybe like in my situation, say, I care about this, but I don't have children that, that have a disability or whatnot. And what other sorts of things can we do to kind of advocate for more? I don't know what the right word for it is. Inclusion is probably the right word. Cause I, I mean, that's the, one of the best things and your kids are a perfect example. I don't know if you said this already, but I definitely read that. You said your kids are better off as a result of Scarlet. And uh, it's, it's definitely good for children to be around a variety of types of even if it's beyond just a cognitive ability or physical ability or even skin color and all that stuff. It's very good for kids to start in early, as age as possible to be around other types of kids. And that's part of the issue is when you don't have them around other types of kids, they kind of get in this bubble. And that's some lot of times where the problems start, but what can we do as, um, people like in my shoes, either with our pocket book or voices or
Speaker 1 00:46:31 Yeah, I mean, there's so many things you can do and they can be big and they can be little Scarlett's in a gymnastics class. And just the fact that like sometimes the teacher has to help her more that the parents in the class, they keep their kids in there, you know? So like keep your kids with kids with disabilities. So even if you're at soccer and the team's running a little slower because you have a child with a disability, don't let that be a reason to pull out and leave. Like, cause we're all bigger, faster, stronger. We want our kid to be the best soccer player. So the coach spends five instruments, but this kid like, oh, well that five minutes could have been with my kids. No, just let them be a part of your community. Um, I just think any time, like you can include those kids.
Speaker 1 00:47:18 So, um, you know, if there are some kids with disabilities, your kid's age and they want to be on the soccer team and it looks like mom and dad are struggling step in and help, you know, like just little things like on the playground. Like if there's a kid with a disability, let your kid go up and talk to them and playing with them and get to know all men. You know, me personally, I'm an open book, so I will share my story with anyone and everyone, because I hope that it will help them and either help them on their journey or help them with their perspective, like how they see Scarlet or kids like her because of Scarlet. My kids are the kids who, you know, Millie plays like the one and only white girl in her class. And she's one of her best friends.
Speaker 1 00:48:01 She's not afraid of people who look and act different than her. You know, my kids, if there's a kid with a disability on the playground, they're one of the first ones to go play with them, you know? And sometimes they'll ask questions and just kind of teaching them to phrase those questions in a respectful manner. Like not what's wrong with her. And like, that's something like people see a kid and he's like a double amputee, like instead of what's wrong with her or him or her it's, that's so cool. Like, you know what? He has worked so hard and he is in this karate class with you and when you're going to celebrate him and he's super cool instead of it being something shameful or embarrassing or let's be quiet about it, we all know Scarlet has down syndrome. Like her diagnosis is literally on her face.
Speaker 1 00:48:52 So we don't need to pretend that she does it, that we can just, you know, do our best to educate others. She's not bad. She's not scary. She's hardworking. And hopefully she'll be really successful. And I'm excited to see, you know, what she does. And the down syndrome association in central Kentucky offers classes and support from birth until like forever. So like they have a lot of like classes. They send kids to college, they have cooking classes, they have classes where you learn to ride a bike. I'm trying to get Isaac to get her. I shut the gate and she's not very happy with me, mommy, mommy. So Deepak is just our local, it's the down syndrome association of central Kentucky. So it is our local down syndrome organization. Hold on. We're going to pause. Is that okay? Okay. I figured out what she was saying. She was going hot dog, hot dogs. Mommy hot. Yeah.
Speaker 0 00:50:09 Our youngest is obsessed with, um, just getting in food and in running around the house with snacks and we're like, dude, you gotta get out of the cabinet.
Speaker 1 00:50:18 Yeah. Oh yeah. Well she like opened the freezer. They were frozen hot dogs. Oh girl. Yeah. I guess she can us that she's great. And what she wants an age, right? Yeah. Okay. So before I ran off, so down, um, dissat at the down syndrome association of central Kentucky. So it supports like Lexington and the surrounding counties. And then there's like another association in Cincinnati. We also support like some of like the like south Eastern counties, just because they don't have an association and literally they will help anyone who calls and asks for help. So donating to, desex always a great thing. They also like offer programs for people of all abilities just in that like helps give that exposure. So like they'll have an all abilities bike camp. So that's not just for people who have down syndrome, but it's any kid who wants to come. So they're trying to like help foster that inclusion by offering things where typically developing kids can participate and get that experience as well. So I think that's pretty good. Yeah. That's a good idea. Yeah. Awesome.
Speaker 0 00:51:28 Well, Laura, thanks for chatting with me and sharing your story. It's been enjoyable and I'm impressed with, um, you're also parenting in the background that's
Speaker 1 00:51:38 Oh my goodness. I'm so sorry.
Speaker 0 00:51:41 You are a, uh, multitalented, uh, person over there. So thanks for joining
Speaker 1 00:51:48 Me to, well, thank you so much for having me and thank you for like wanting to share and help others understand what it's like to have a child with down syndrome and to also like get our community to be supportive. Um, I appreciate that. And I also appreciate you and Alison for always being so supportive and kind, and like Allison's one of those people who, you know, I talked about whenever Scarlett was bored, I was afraid people wouldn't want to be my friend. And I felt like Ellison wanted to be mapper and more because of Scarlet, you know what I mean? Like she's one of those people that felt like was attracted to her and it was just so sleep and kind, and she's always been a good friend. Yeah.
Speaker 0 00:52:29 Well, thanks for doing that. Well, I appreciate it. And um, we'll be, I'm sure in touch. You're not, I'm going to stop next time. I see you on the lemonade stand.
Speaker 1 00:52:39 You're talking about other things to add to the lemonade stand. So, I mean, we had a lot of traffic. We had two firetrucks. I mean, we are serving
Speaker 0 00:52:50 Malibu and hunter. Cause I think you all were walking down from, I guess that was hunter when we were driving by so that's good road frontage there. A lot of, a lot of traffic there.
Speaker 1 00:53:02 Oh yeah. We had lots of good people stop. It was so sleek. So I expect you something, right? I will.
Speaker 0 00:53:07 We're always driving down there. Well, good to see you as always. Thank you so much for joining us today. If you found this valuable, please give us a review on iTunes and share with a friend. Also check out our website at finance, for physicians.co for all sorts of additional content. See you next time. Finance for physicians is not an investment tax legal or financial advisor. All content included in this podcast is for informational purposes only and should not be considered financial tax or legal advice. Material presented. It is believed to be from reliable sources and no representations are made by finance for physicians as to another parties, informational accuracy or completeness, all information or ideas is provided should be discussed in detail with an advisor accountant or legal counsel prior to the implementation. You don't have an advisor or like a second opinion. Feel free to check out our website for recommended advisors.
