CODED: Genetics
CODED is a podcast brought to you by Genetic Support Foundation and hosted by Katie Stoll, MS, CGC and Dr. Stephanie Meredith. We explore the most pressing issues at the intersection of genetics, healthcare policy, and bioethics. CODED will be of interest to healthcare professionals, policy makers, and anyone interested in understanding how advances in genetic medicine are reshaping healthcare delivery and society at large.
CODED: Genetics
Celebrating World Down Syndrome Day with Andy and Will
Today, Katie and Stephanie celebrate World Down Syndrome Day by interviewing Stephanie's son, Andy, and his support staff, Will, about what life is like for people with Down syndrome and how support staff help people with disabilities to access the world and meaningfully engage with their communities. Find out what they do on normal days, who they serve, and what they think is important for you to know about Down syndrome.
Please consider making a donation to the Genetic Support Foundation to keep supporting this podcast and our organization that provides free resources about Down syndrome and other genetic conditions to new and expectant parent every day.
Resources:
Lettercase National Center for Prenatal and Postnatal Resources
Lettercase Bookstore (20% off through May 24, 2025)
National Down Syndrome Society
National Down Syndrome Congress
MDSC National First Call Center
Parallels in Time: A History of Developmental Disabilities
Genetic Support Foundation: https://geneticsupportfoundation.org/
Lettercase National Center for Prenatal and Postnatal Resources: https://www.lettercase.org/
Greetings and welcome to the Coded Podcast. I'm Katie Stoll, Executive Director at Genetic Support Foundation.
Stephanie Meredith:And I'm Dr Stephanie Meredith, the Development Director of GSF and Supervisor of our Lettercase National Center for Prenatal and Postnatal Resources.
Katie Stoll:And today we are getting a jumpstart on World Down Syndrome Day, which is celebrated on March 21st each year. Get it Down syndrome has three copies of the 21st chromosome, so we celebrate on the 21st day of the third month of the year.
Stephanie Meredith:And some of the things we're going to highlight that GSF is doing coming up soon. We're having a DNA dash coming up on May 31st and you can register to do this 5k with us. We are going to have a genetics playlist. We are going to record ourselves training for this 5k with us. We are going to have a genetics playlist. We are going to record ourselves training for a 5k because I need to do that as a you know, chunky, middle-aged lady, and so that is what we would love to have you join us to do. We also have our resources about down syndrome, which are always available online for free in 14 different languages, and our printed resources are on sale this month for 20% off for World Down Syndrome Day through.
Katie Stoll:March 24th. And just a quick note that DNA Dash is a virtual event, so you can participate from anywhere in the world. Join us, it'll be really fun. It doesn't have to be running. You can DNA Dash in all different kinds of ways to help support Genetic Support Foundation.
Stephanie Meredith:Absolutely, you can run, walk, roll or even do a craft that you think would be fun to do. And just to kind of give a little bit of a background from a recap from our last conversation yesterday, our good friend Dr Brian Scott Coe highlighted an article that he co-authored back in 2023 in the JAMA Health Forum about how often adults with Down syndrome utilize Medicaid. His team actually found that 189 claims per year are made for most adults with Down syndrome. That's the average across all demographics. So even some parents of kids with Down syndrome that's the average across all demographics. So even some parents of kids with Down syndrome looked at that number and said, gosh, there's no way my kid goes to the doctor that many times per year.
Stephanie Meredith:But when you dive into the details of this study, it actually looks at people specifically 18 and over, and Medicaid visits can include claims from the purchase of medical equipment, prescription medication and also long-term supports that are provided through Medicaid.
Stephanie Meredith:These long-term supports can be a session, a day program, a visit with a job coach, a day of respite or a session with community support staff, and those add up pretty fast for people who often receive services five days per week pretty fast for people who often receive services five days per week. So, even though the study didn't include children under 18, kids with Down syndrome they usually use the Katie Beckett Medicaid waiver and may go to therapy three to five times per week, plus doctor visits to reach their developmental milestones, and a middle class family usually can't afford these visits on their own. So those can add up really fast too, and the idea is that we invest as a society in these services so that people with Down syndrome can meaningfully participate in their communities, because they're part of the vital fabric of society and we enjoy having them around. So we're going to lean into World Down Syndrome Day and talk about why it's important to advocate for those important services that people with genetic conditions need to thrive.
Katie Stoll:And I am so excited tonight to be uh, introducing our very first guests on the Coded Podcast. Today we're going to be talking to Andy Meredith, who is Stephanie's 25 year old son who has Down syndrome, and we'll also be talking with his support staff, Will. We're going to talk about how they are working together to help Andy achieve all of his goals and become more independent. Andy has worked at a local grocery store at his home in Georgia for the last seven years. He's building a career in photography. He's a lacrosse coach on a high school team, and Will and Andy have been friends since they were kids. He started working with Andy as a support staff about a year and a half ago. So welcome Andy and Will to the podcast.
Stephanie Meredith:We're so happy to have you. Of course, I see them every day pretty much, and so I'm going to start off with a good question for them, because I know the answer to this question, but Katie doesn't what does an average day look like for you, Andy?
Andy Meredith:I do have disabilities and I start working at the Publix by seven years and six years, or five years too, so that's what I was thinking about it, so it's cool
Stephanie Meredith:what do you do after work?
Andy Meredith:after work. This is like hanging out with some of my friends. So my friends they are loving to have Down syndrome too, and that is good. So and then when I say, like after work, like I am going to hang out with my family, I'm saying Will, is my family, my own support staff? I was thinking about that. I do know him, he was 12.
Stephanie Meredith:And what do you do in sports?
Andy Meredith:I'm teaching the lacrosse players to be better.
Stephanie Meredith:So, Andy, what about? What is your career you're working on with Dad.
Andy Meredith:Career. I'm working with my dad, I'm doing photography and we've been on great a ton of trips. So I go Utah and I go everywhere.
Stephanie Meredith:Well, let's, let Will talk for just a minute, will? What do you guys usually do during the day?
Will:Well, during the day we'll start off with some type of exercise or cardio, either with us, like we go to parks all the time and we used to go biking back in the day a little more when it was warmer but but we also go out for golf all the time and walk out there.
Will:But a lot of times we go out to Road Mill Park or Canton Park and Andy has a little scooter that he'll ride around on or we just will run out there and then we're uh, we're frequent, frequent visitors of one life.
Will:So we love to work out of one life and we we go out there quite often and then, um, also just working on just making healthier meals and like, uh, meal preps and being able to make smoothies and healthier options and like portion controls a big thing we've been trying to work on too, just getting getting a good healthy portions and then just a simple everyday life too, just like cleaning laundry. We help, we help Stephanie a lot with things and just do like today we did yard work for Stephanie over, we got some gusts of wind blowing through and a bunch of things got knocked down and we also help Bernice a lot, which is Andy's grandmother and she's a wonderful lady. We love her but we help her a lot out over there, but just whatever comes up that day. A lot of times we go play golf and just do fun things together.
Stephanie Meredith:And that's so important too for people with Down syndrome, especially because they tend to struggle with weight management, and so you know that cardio activity really helps Andy stay healthy, so so Will's a really important part of that.
Will:Andy makes a lot of friends just either at the park or at the gym or just we do. We go to a lot of church activities too, and Andy really enjoys that, and it's a lot of church activities too, and, uh, andy really enjoys that and it's a lot of fun and we just like to go out and go have fun together and stay active.
Will:but yeah, that's kind of our daily schedule
Andy Meredith:so it was really fun because I had really blast. I play volleyball a ton of times so I'm doing so, so good.
Andy Meredith:So I started weight training when I was in high school
Katie Stoll:, so you guys have known each other for a long time. Like you said, you met in scouts, andy.
Andy Meredith:Yeah, I had a ton of fun. I had a ton of fun. So my favorite is I love Special Olympics. It's really fun, it is really cool and I did love really good canoes. I did a lot, I was in the scouts.
Stephanie Meredith:He also did canoes. He did kayaks in Special Olympics this past year with Will.
Katie Stoll:Yeah, tell me about Special Olympics. I'd love to hear from both you and Will About Special Olympics this last year.
Will:Andy did really. Andy actually did really well. He did a few solo races and then a couple with a duo race where he had a partner. But we practiced for maybe just two months before the Olympics came. That was like late August, so we had the Special Olympics. But it was so much fun. I got to meet a bunch of me and Andy. Both got to meet a bunch of new people and more friends for Andy to have. It's just such like an awesome community, super, super sweet people and a really fun memory Like it was just a lot of fun being out there and I got to go out there and volunteer and help and help set it up and it's such a great community.
Stephanie Meredith:Well, and I know we had a lot of fun this past summer. We went to the drive-in movie. We went to. We have here in Georgia a place we call the Lake Pool and it's right on the border of Georgia and Alabama and it's this huge football sized pool that's fed by a natural spring, and we went there and we had some fried catfish afterwards.
Will:That was a lot of fun.
Andy Meredith:So I did like hang around with my family and I was thinking like I had like catfish, it was really good, and I jumped in a little big pool.
Will:Also another thing me and Andy have also been to a few dances for like his college and then like some church dances and like birthday parties. That were lots of fun and Andy got to make lots of new friends and bust out some. Uh, Andy's got some dance moves. I'll tell you that he he can get down on the dance floor. I mean we've all went golfing. Me and Andy have had a lot of fun times on the golf course of him being with my dad and my grandpa. Or just friends. Andy loves to drive the golf cart.
Will:Oh, depending if we want to get a little extra cardio that day. But Andy loves to drive the golf cart.
Andy Meredith:Golf cart is best, so it's so cool. I started golfing when I was growing up, so I am 25. So me I'm changing, so I started golfing with this guy.
Katie Stoll:Good to have a golfing buddy. Can I ask you guys one last question? This is about our gsf dna dash. Are you guys going to participate in the dna dash, the 5k?
Will:if I'm around, I probably will definitely enjoy the 5k we actually that was another fun memory we had. Andy wrote on andy. Uh, andy wrote on my back for like the last like mile of a 5k we did. Uh, it's for a teacher that had a coach that passed away I think my coach is his name.
Andy Meredith:I don't remember his coach english that's right actually he died a year ago, because that's why I am not happy. I had that feeling sometimes, so it is hard.
Will:Yeah for that, for that 5k, we actually ended up running like two more miles than we were supposed to. We got lost towards the end of it and I, I used I used a game on my phone, I used like Pokemon Go to like find our way back to like the actual place and, yeah, andy finished that race on my shoulders. Actually, right when we got to the finish line I let him him off the shoulders so he had the full energy to run through and I was just left. He left me in the dust.
Stephanie Meredith:Yeah, we'll try If I'm there.
Will:I would love to run.
Stephanie Meredith:I will be dragging one or both of them along.
Katie Stoll:You got some extra cardio that day Will.
Will:Emmy and Anna will go hiking a lot too, Just like on nature trails.
Will:Just like off of a, just like random parks, I'd start riding my bike. I did a lot of times and it is getting better. I would say our most favorite fun memory that we really had was over this uh, it was right after christmas, right before andy's uh 25th birthday, we went to universal studios out in um, orlando, florida, and that was a ton of fun and we were out there for about a week and we also got to. We also got to go to daytona beach the day after and just have a thing, right, but that was a ton of fun and we were out there for about a week and then we also got to go to Daytona Beach the day after and just have a thing. But that was so, so much fun.
Will:Andy had a blast Andy you wanna tell us about some things we did in Universal, one of your favorite rides.
Andy Meredith:My favorite rides is big scary ride. My favorite is Grip Hook and it is really really fun.
Stephanie Meredith:And so that trip to Universal was their Christmas present.
Will:Yeah, it was.
Stephanie Meredith:And it was Andy's first bro trip alone, without his parents, which for a 25-year-old is pretty cool.
Katie Stoll:That's pretty cool. It sounds amazing. Also, back to the cooking healthy meals. Um, do you guys have a favorite recipe, a favorite meal you like to prepare?
Will:that's a good one. We uh, one of the simpler ones that we do. That that we'll do for like lunch or something we love to make, like just any kind of pasta. We also make wraps a lot too, just um. We love to make smoothies too andy, and he can get a little interesting with the ingredients that he'll throw in there. He loves a good smoothie.
Stephanie Meredith:I think my favorite Andy smoothie recipe story was when he made. All of it sounded good up until a point, so he put vanilla, almond milk, chocolate, almond milk, peanuts, peanut butter, bananas. All that sounded fine, but the final ingredient, the piece de resistance, was cantaloupe. And that was when I was out. But it was still healthy, it was still good.
Katie Stoll:Trying to get you some fruit
Stephanie Meredith:.
Andy Meredith:I think I made those on myself, because I made smoothies and shakes too, so sometimes it is called protein shakes. So yeah, it is really good.
Stephanie Meredith:All right. So, andy, what do you wish people knew about Down Syndrome for World Down Syndrome Day?
Andy Meredith:Also. I learned about that on my phone. It tells me I have Down syndrome. I share people , kindness. I really love how people have Down syndrome. That is true, what you feel. That is my point right there dead on. I really feel it because it is really true. I love everyone, share kindness, passion. I really love them.
Katie Stoll:Will, now that you've been working with Andy for a while. What would you like to tell people about Down Syndrome on World Down Syndrome Day?
Will:Well, I think it's been a great blessing for my life to be able to work with Andy and I think Andy is just like anybody else and I think he really tries to live life to the fullest and just enjoy all the time that he has here. And Andy's very charismatic. I feel like a lot of people feel like Andy's just always happy and is just always good. But Andy's just like anybody else. We can have our ups and downs, but Andy, we really try to take the good over the bad. But I think if anyone has ever ever the opportunity to work with anyone with Down syndrome, they should. They should do it. It's really bonding and it gives like a different perspective almost of just like anybody with like any disabilities.
Will:But it's been such a blessing and I love working with Andy. He's my best friend. So we've been. We've been through the rough and the grass. It's been fun. I've really I've really enjoyed working with him. But he's doing it and he lives life to the fullest he can and I think it's been amazing so far. He says lots of good experiences with his family and friends and work and he's he's doing it. He's getting it done.
Katie Stoll:Same same question to you, Stephanie what? What would you like people to know about Down Syndrome for World Down Syndrome Day?
Stephanie Meredith:Yeah, and I mean I want to add to that when you have, when you have support staff, they also become like family and it's kind of cool because I've had a number of some of our friends from church who've ended up being support staff, who are younger, and they become part of the family too. But I think, as far as generally, what I wish people knew for World Down Syndrome Day is that people with Down syndrome make the world richer and better because they are part of the fabric of society and they I think that one of the best lessons I've learned from Andy is that our value isn't measured by some arbitrary metric of what we achieve, but by the relationships we build with other people. I had a really great question at a conference one time when I was asked to speak and they said what was one time that you were proud of your son? That had nothing to do with a milestone or something that he accomplished and it came to me pretty fast. And it was one time when my youngest ended up colliding with another basketball player and I mean she really ricocheted off this other kid and you could hear her head hit the floor hard and before anybody else could respond, andy jumped over like two, two bleachers and he ran out there and scooped her up and he didn't care about the rules of the game. And I love that he didn't care about the rules of the game, like the most important thing was taking care of his baby sister. And I think that is so important in realizing that what we contribute to the world is how how we treat other people and and I.
Stephanie Meredith:Another time that I really enjoyed was when Andy was, I don't know, about four years old. He was on a softball team and it was Challenger League and he was out there and he was so cute I mean, his little shirt went past his knees and we were there and I kind of looked around and there were all of these really competitive teams all around and that you could tell the parents are really getting into it, you know, and Andy was sitting there and you always got donuts at Challenger League and he had a donut in one hand and he had a bat in the other and he was at the tee and he's just having a great time. And I just thought I'm so happy that for my first child I'm getting to experience sports, just for the fun of it. And I think you know, going back to what Will said, it's just that it's enjoying life because we're having fun together and um, and I think that's really important and I think also, you know, another thing I want people to know for a world down syndrome day is just that, in general, none of us like the R word, so um, so really avoid us like the r-word.
Stephanie Meredith:So um, so really avoid using that word. Um, if you don't know what it is, google r-word. I really don't want to say it, so but uh, but we prefer not to hear that word. So those are some of my my things that I would like to share on World down syndrome day
Andy Meredith:I think I have some thought a little bit about have Down syndrome me.
Andy Meredith:I build whole family. It helps me like whenever I really feeling it in the in the connection have I do have , I have my whole family. I got like. I got like ton of parents, so I got my some brothers too.
Stephanie Meredith:And I just want to say that when Andy really loves people, they become family. And so you know, I have to kind of be careful because I'm like I don't actually have 20 kids myself, because I'm like I don't actually have 20 kids myself. But when Andy loves you, you are family and I wish all of us saw the world that way. It's actually a pretty cool way to be.
Katie Stoll:It's pretty beautiful to have so many brothers and sisters.
Will:Lots of relationships. Andy loves relationships.
Andy Meredith:Yeah, I have a thing about relationships.
Will:Andy loves relationships.
Andy Meredith:Yeah, I think about relationships. It builds in my trust. I really love people. I have disabilities or something that is really true, so I'm learning how to have those experiences. It is getting better. It takes like two hours and it is. I am working on that on my own.
Katie Stoll:Well, I love your message of kindness for everybody, andy, and I'm so glad to get to learn more about all you're doing and the world and how much you are making the most of every day of this beautiful life, and to get to hear about all of your adventures with Will. So we'd like to end the episode with a little gratitude, some shout outs and things that we're thankful for, and also things that we can all do, and I just want to make sure our listeners know, especially those that are medical professionals genetic counselors, physicians, physicians one of the best things that we can do is to make sure that we're providing good information to patients when they're learning about a diagnosis of Down syndrome, making sure people know about the resources and supports that are available to them. There's so many wonderful resources, some important organizations to know about National Down Syndrome Society, the National Down Syndrome Congress, the Massachusetts Down Syndrome National First Call Center, and I hope that you'll find your way to Genetic Support Foundation for more information to help share with people.
Stephanie Meredith:Thanks so much. And some other great resources to know about in the Down Syndrome community are Ruby's Rainbow. Ruby's Rainbow is a great see Andy's nodding his head. It's a great organization that gives scholarships for people with Down syndrome to go to college, and Andy was able to go to Reinhardt University and audit courses in photography and have a customized program. That was amazing for him.
Stephanie Meredith:Other great organizations are the Lucky Few podcast. They tell wonderful stories about life with Down syndrome. And then Jack's Baskets does a great job welcoming new babies with Down syndrome. And all of these organizations are working to make the world a better place for people with Down syndrome and are great to tune into.
Stephanie Meredith:And then I'm also particularly grateful for the disability advocates who literally crawled up the steps of Congress for our most important pieces of legislation, which are Section 504, which requires that any entity receiving public funding be accessible to people with disabilities, the Americans with Disabilities Act that requires that any public building be accessible to people with disabilities, and public service utility. That's the reason why when you use your iPhone, you've got disability features on there and those are great. Like, andy actually mentioned his phone and he uses that a lot to be able to communicate and he uses some of those features and it helps him have that robust social life where he is making life better for other people. And then, of course, the Individuals with Disabilities Education Act, which helped Andy get through school and he was included at least half the time in regular classrooms and he also received some special education instruction as well and just made all the difference. And we have to make sure that we keep those rights intact and keep those available for new generations coming up.
Katie Stoll:Absolutely Well. Thank you so much for being here with us today. We are so looking forward to celebrating World Down Syndrome Day and thank you Will. Thank you, andy. We hope that you'll join us next time on the Coded Podcast, where we plan to dive into the topic of direct-to-consumer genetic testing. As always, we invite listener comments. Please reach out if you have questions or things you'd like for us to talk about on this podcast, and we really appreciate you listening. Thanks so much for joining us.
