Down Syndrome Awareness Day – PediaCast 558

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  • Dr Mark Wells, Dr Murugu Manickam, and Kari Jones visit the studio as we celebrate World Down Syndrome Day on March 21. This year’s theme is “End the Stereotypes” and we will do that by answering questions and correcting misconceptions about this common genetic condition. We hope you can join us!

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  • Down Syndrome
  • Trisomy 21
  • World Down Syndrome Day

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Episode Transcript

Announcer:     This is Pediacast. Welcome to Pediacast, a pediatric podcast for parents. And now, direct from the campus of Nationwide Children's, here is your host, Dr. Mike.

Dr Mike Patrick:     Hello everyone, and welcome once again to Pediacast. It is a pediatric podcast for moms and dads. This is Dr. Mike coming to you from the campus of Nationwide Children's Hospital. We're in Columbus, Ohio.

Dr Mike Patrick:     It's episode 558. We're calling this 1 down syndrome awareness day want to welcome all of you to the program Before we get into down syndrome I do have a public service announcement for everyone and that is to please Pay attention to weather warnings a few days ago I woke up around 5 in the morning and my wife was yelling at me, there's a tornado. Now, I wasn't too concerned because we get tornado warnings here and there and nothing usually comes from them. You know, when I was a kid, if a tornado warning came out, it meant there was a tornado on the ground and possibly heading toward you. Please go to your basement immediately.

Dr Mike Patrick:     But today with our modern technology, you know, they can see a little rotation on the radar and they may call a tornado warning and then maybe there's 1 and maybe there's not and you know we all get sort of warning fatigue sometimes but in in this case there really was a tornado and it hit a subdivision about a mile from us now it was a little guy just shy of being an EF2 tornado, but even the little ones pack a punch and we know several people who live in that neighborhood. 1 was actually a nurse that's a colleague of my wife's in the pediatric office where she works and their house was hit full-on with with quite a bit of damage. The garage and the roof separated from the house, it knocked over their chimney, broke windows. Fortunately nobody was hurt and things can be replaced. And I know it could have been much bigger.

Dr Mike Patrick:     They could have hit our neighborhood and you know we live in a suburb of a major city that is not in the traditional tornado alley. So you know really the moral of the story here is have something other than a screaming wife to wake you up. So set weather alerts on your phone, invest in a weather radio, and even if you have experienced many false alarms in the past, please take the weather warnings seriously because they just might save your life. That was, It was pretty scary. And I mean, I just jumped straight up in bed.

Dr Mike Patrick:     I'm like, huh, what? And sure enough, there was a tornado heading right toward us. All right, so today we are talking about Down syndrome. Every year on March 21st, it is World Down Syndrome Day. And the theme of the day this year is ending the stereotypes.

Dr Mike Patrick:     And so we're gonna focus on the many misconceptions that surround Down syndrome and sort of set the record straight with answers to the most common questions that people have about Down syndrome. To help us do that, we have some terrific guests joining us like we usually do. Dr. Mark Wells is a primary care pediatrician and works with patients and families in the Down Syndrome Clinic at Nationwide Children's Hospital. Dr.

Dr Mike Patrick:     Marugu Manikam is a genetics and genomic medicine physician at Nationwide Children's. And Kerry Jones is president and CEO of Elevated and works very closely with the Down Syndrome Association of Central Ohio. All of them will be coming along shortly. First though, I do want to remind you, you can find our podcast wherever podcasts are found. Please do subscribe so you don't miss an episode and we also really appreciate reviews wherever you listen to podcasts so that others who come along looking for evidence-based child health and parenting information will know what to expect.

Dr Mike Patrick:     Of course, we're on all the social media platforms. We love connecting with you there. Just search for Pediacast and we have that handy contact link over at pediacast.org if you would like to suggest a future topic for the program. Also want to remind you, the information presented in every episode of the podcast is for general educational purposes only. We do not diagnose medical conditions or formulate treatment plans for specific individuals.

Dr Mike Patrick:     If you have a concern about your child's health, be sure to call your health care provider. Also, Your use of this audio program is subject to the PDAcast Terms of Use Agreement, which you can find at pdacast.org. So let's take a quick break. We'll get our expert guests settled into the studio, and then we will be back to explore the genetic condition known as Down syndrome. It's coming up right after this.

Dr Mike Patrick:     Dr. Mark Wells is a pediatrician with the Lincoln Village Primary Care Center, and he sees children and families in the Down Syndrome Clinic at Nationwide Children's Hospital, and he's an assistant professor of pediatrics at the Ohio State University College of Medicine. Dr. Marugu Manikam is a clinical geneticist at Nationwide Children's and a professor of pediatrics at Ohio State. And Kerry Jones is president and CEO of Elevated, which supports the Down Syndrome Association of Central Ohio.

Dr Mike Patrick:     Each has a passion for supporting those impacted by Down syndrome, including kids, teenagers, adults, families, and siblings. They're here to talk about Down syndrome with an emphasis on raising awareness and correcting misconceptions regarding this common genetic condition. But before we get into that, let's give a warm PDA cast welcome to our guests, Dr. Mark Wells, Dr. Marugu Manikam, and Carrie Jones.

Dr Mike Patrick:     Thank you all for being here today.

Dr Mark Hall:     So glad to be here. Thank you so much for having us.

Dr Murugu Manickam:     Thanks for having us.

Kari Jones:     Thank you.

Dr Mike Patrick:     Yeah, we're really excited to talk with you today about Down syndrome. And today, really the focus is going to be on awareness and setting the record straight on common misconceptions. For much more information about Down syndrome itself, so, and we'll mention some of these, but for really a deep dive into the signs and features, you know, management, complications, things that, you know, more of the, of the condition itself. We do have another podcast for you, Pediacast 453, which we did just a couple of years ago, supporting kids and adults with Down syndrome. And I'll put a link to that in the show notes so folks can find it if you're interested in learning more.

Dr Mike Patrick:     But you know as we start here I think a good place to do that really is with a reminder. Mark, what exactly is Down syndrome?

Dr Murugu Manickam:     All

Dr Mark Hall:     right, so Down syndrome is a condition in which someone has an extra copy of the 21st chromosome. And you may ask, what are chromosomes? Chromosomes are kind of like bundles of genes that help determine how someone's body forms and develops with time. This extra copy leads to 3 rather than 2 copies of the 21st chromosome, which is why we use the term trisomy 21 or 3 tri-somy chromosomes for someone with Down syndrome. Down syndrome can be associated with intellectual and developmental differences as well as various medical concerns, but our focus today is instead of highlighting those differences is on addressing and ending stereotypes of people who have Down syndrome.

Dr Mike Patrick:     Great, and then what is it then that accounts for the differences that we see in terms of the exact symptoms and the severity of symptoms?

Dr Murugu Manickam:     So a small percentage will have mosaicism. That's where some cells will have 2 copies of the 21st chromosome, and some cells will have 3 copies of the 21st chromosome. It's just probably a little bit of a different mechanism by which it happens, but it does sometimes influence how much the child or adult is affected by having that extra copy.

Dr Mike Patrick:     Yeah. And does it matter which parent the extra comes from at all? And does it happen with more with maternal versus the fathers?

Dr Murugu Manickam:     Yeah, so mostly it doesn't matter in terms of how the child's affected, but in most cases we do think it probably comes from the maternal copy. There is an association with moms who have advanced maternal age, so that was a relative term for being over the age of 35. And certainly your risk goes up slightly after you turn 35, but it's really not substantially different. And the truth is, in a majority of cases of families that have a child with Down syndrome, they were actually under the age of 35.

Dr Mike Patrick:     Yeah, and then it kind of makes sense then why it's called trisomy 21 because there's 3 copies of the 21st chromosome, there's only supposed to be 2. But Down syndrome, Mark, how did we come out with that name?

Dr Mark Hall:     So trisomy 21 is called Down syndrome after the 19th century English physician, Dr. John Langdon Down. He had published first description of a person who had Down syndrome in 1866, which led to his name being associated with the syndrome. However, it wasn't until the 1950s that people discovered the genetic cause for Down syndrome as trisomy 21. So once this connection was made, we then had trisomy 21 called Down syndrome.

Dr Mike Patrick:     So Dr. Down just saw a common expression of a condition and didn't really know exactly what caused that because we didn't have an understanding of genetics yet, and it's named after him. Very interesting. I love those little medical historical factoids.

Dr Murugu Manickam:     So Maruku, how common then is Down syndrome and who is affected? Are there particular risk factors? So, the best current data we have is about 1 in 700 live births will have a child with Down syndrome. And it is important to put into the context of live births because we do also know that there are a lot of miscarriages that can also have a Down syndrome karyotype, if you were to look. Those numbers have varied a little bit from year to year, but not really substantially over time.

Dr Murugu Manickam:     But I will also say that there's some concern we don't have really great exact information about those numbers. It does vary definitely by state to state and country to country, but it does affect all populations equally. There is no huge risk factor for having a child with Down syndrome, with the exception of a rare case where you can have that 21st chromosome attached to another chromosome, in which case, then there's a slightly increased risk to have another child with Down syndrome. But that occurs only in about 2 to 3% of cases.

Dr Mike Patrick:     So the majority of cases really just arise spontaneously. It just happens and we maybe don't exactly understand why that extra chromosome gets copied over.

Dr Murugu Manickam:     Yeah, I think sometimes the geneticist I'm always amazed any of us are walking around. But 1 of the reasons I think with Down syndrome specifically is that actually the 21st chromosome is the smallest of all the chromosomes. So for example, if you were to have an extra copy of the first chromosome, which is the largest, that actually will end up in a miscarriage. There's so much extra genetic material that the body doesn't tolerate it. But because the 21st chromosome is small, the body tolerates it a little bit better than it would for other ones.

Dr Mike Patrick:     Yeah. Now I'm not a geneticist, so bear with me. The mosaicism that you're talking about, so some cells in the body have a third 1 and others do not have a third 1, have basically normal number, And so depending on which cells are affected and which ones aren't, that kind of determines the exact set of symptoms, of characteristics, maybe I should say not symptoms, that show up with this genetic condition. And so that's something that must happen, not with the very first division, but it must be down the road that that happens in order to also have some normal cells. Is that correct?

Dr Murugu Manickam:     LM Somewhat. I would say that taking the second part first that you can have definitely that's probably the most likely scenario, but there's actually also another scenario where you get something called trisomy rescue, that when the cells are dividing you are born with all the extra 21st there, but because it's not a natural part of the cells dividing, sometimes that extra one's actually lost. And so we actually see this as people age in adults with Down syndrome, that as they get older, they actually tend to lose that 21st chromosome, especially in cell lines that turn over really fast. So if you look at like blood cells, you'll see sometimes in older individuals with Down syndrome that they've actually lost that 21st chromosome. But where you're also looking really matters.

Dr Murugu Manickam:     So we can check the blood and that's how we most often make the diagnosis. But really what you probably care about is how is it affecting them in terms of intellectual disabilities and things like that. And we don't do brain biopsies. We don't look at the brain, but that will certainly reflect how much they're affected.

Dr Mike Patrick:     So then do you see any change in expression or like the phenotype as you lose that extra 1 as you age?

Dr Murugu Manickam:     That's a great question. Or no. Even actually in the regular case of having that extra 21st chromosome, it's actually not just that 21st chromosome. There's some really good studies out there now that we have to stop thinking of chromosomes very linearly and in like single lines. They exist in this big clump in the nucleus.

Dr Murugu Manickam:     And so that extra 21st chromosome actually affects all the other chromosomes. It affects the expression across all the genome. And therefore it's making little changes here and there that we really have a hard time picking out because all of us have that extra expression anyway. And so I think we're starting to kind of realize that we have to stop thinking in 2 dimensions and start thinking more in 3 and even 4 dimensions because how our cells are expressed when we're infants is very different from how they're gonna be expressed when we're 5, 15, 65 years old.

Dr Mike Patrick:     Yeah, fascinating. And when you first went into genetics, I feel like you're probably about my age. And has it just blown your mind where we've come compared to where we were when you trained?

Dr Murugu Manickam:     Absolutely. I was just at a Gen X conference and I come back from those conferences now and I feel like my mind's about ready to explode with all the new information I've gotten. And I thought, you know, like I understand things pretty well, but nope, that's not the case.

Dr Mike Patrick:     Yeah, yeah. No, it is, It's so complicated and really we need today's computers often to really be able to figure out what someone's genome looks like. And as we learn all of the twists and turns and clumping and other molecules that affect genus expression and all of those things, it's so complicated. So let's turn our attention back to World Down Syndrome Day. Oh yeah, yeah, go ahead, Carrie.

Kari Jones:     If I can just add 1 thing from the kind of zoomed out like 10th grade biology approach here, Maybe even more zoomed out than that. I think an important thing for people to just generally know there are some misconceptions that Still exists that it's the mother's fault because I think that piece of it being tied to the mother and the maternal age tends to elicit a guilt among mothers, maybe more so than fathers. And so I think it's just important to reiterate that it is just something that happens and it is not anything that a mother or father has done. And so we do still hear from new parents that maybe they knew that, but then their aunt Sally didn't know that. And other extended relatives are treating them a certain way because they're just really, they just have no idea that it is just kind of a thing that happens.

Dr Mike Patrick:     Yeah, that there's nothing that the mom did to make that happen. Yeah. Like drinking alcohol or drugs or being exposed to something. This truly is just something that happens. And there's nothing we can do

Kari Jones:     about it. Well, I think anytime there's an abnormality, that's kind of where you go, right? So you're with anything, either genetic condition or not. And So I think that's just really important to dispel with all of this is that that is, you know, beyond all the beautiful details of genetics and what can happen and the expression and all of that, just when you look at the epidemiology for the lay person, It's just important to know that it just happens and it is not something that the parents have done or not done.

Dr Mike Patrick:     Yeah, yeah. Really, really excellent point. Let's turn our attention to World Down Syndrome Day and That is actually happening here in a couple of days. It is March 21st every year and the carry tell us about World Down Syndrome Day and the theme of the day this year

Kari Jones:     Well, we love World Down Syndrome Day. We love playing on 3 2 01/03/2103 copies of the 21st Chromosomes, how we get to that day. It's the third month, the 21st day. This year, the theme is End the Stereotypes, which we love. Across the world, We're celebrating the unique and beautiful gifts that people with Down syndrome have.

Kari Jones:     And I think that ending the stereotypes is an important approach to that, which is really stop thinking about what people can't do and start thinking about what they can do.

Dr Mike Patrick:     Yeah, I love that. And, Murgu, what are some of those stereotypes that you find are associated with Down syndrome, especially when you talk with families and folks who are impacted by this? I'm sure they come in with some experience of having heard of it, but maybe don't quite understand it and likely do have lots of misconceptions.

Dr Murugu Manickam:     Yeah, I almost talk about it a little bit like almost generationally. You know, in the 1970s, a lot of families would have been told, you know, don't even take your child home, institutionalize them, to some degree just ignore them. And few families started to not do that. And it became more acceptable that it's okay to have a child with Down syndrome at home. And then I kind of give the example in the 1980s that about 50% of kids with Down syndrome will have a heart defect.

Dr Murugu Manickam:     But in the 1980s, nobody was going to do a repair for a child with Down syndrome who had a heart defect. In the 90s, you started to get more integration into schools and started to recognize really the importance of early interventions. And now we're getting to that time when high schools are starting to have to figure out what to do with, you know, teenagers who have Down syndrome and find themselves thinking about what's that next step even look like. So parents often come in with whatever their conception is from whatever their experience was, you know, whether they went to high school with somebody with Down syndrome, thinking about the age that they are now, or if there's somebody in their community who has Down syndrome. And that person, again, is going to be a little bit on the older side.

Dr Murugu Manickam:     And I often say that the outcomes are going to be very different because We've gotten better about what we can do for kids and adults who have Down syndrome medically, but also I think society's gotten a lot better. Programs like what the SACO has been able to do in Central Ohio with extending, you know, how kids learn with Down syndrome is really important and catering to what they need to be the best version of themselves.

Dr Mike Patrick:     Yeah, yeah, absolutely. When you say that outcomes were quite a bit different a few generations ago compared today, that really tells us that the environment that a child who is impacted by Down syndrome lives in, grows in, develops in is going to be really important. And 1 of the important things as we do support these kids is to give them goals and to push boundaries. Carrie, why is that important and how can families best do that?

Kari Jones:     Yeah, a lot of times we talk about expect, not accept. And what I mean by that is, it's not that you're not gonna accept your loved 1 for who they are. That's certainly not what we're saying. You absolutely should accept your loved 1 as they are, but you should expect more. You should expect a life that's full of opportunities.

Kari Jones:     And so we really want to highlight that when we're talking with families of dream big. You can get there if you you're gonna have to put in more work. I mean that's that is a piece and that's really where organizations like ours wrap around the entire family to help elevate them to where they need to go. And that is addressing the other needs that a family has, whether that's connectivity, financial resources, educational resources. You really do need to be there to support the whole family to get there.

Kari Jones:     But people can achieve great things, this goes for anybody, but people with Down syndrome especially, if supported in the right ways, they can really blossom and thrive. I have a brother with Down syndrome. I'm sure I've disclosed that on a previous episode, but full disclosure, I do have a 39 year old bro who is living his best life and I can say confidently that from a very, very early age, my parents were rallying around him and seeing what was available, harnessing those resources and leveraging them so that Alex could become his most independent and beautiful self that he is today.

Dr Mike Patrick:     Yeah, and really it takes kind of a village really to surround. I'm sure your brother had a lot of support, you know, from your family of course, but I imagine throughout the community as well. And I think he said he lives independently, yes?

Kari Jones:     Yeah, yeah. He has someone come a couple days a week to take him to run errands and, you know, keep his haircut fresh and that beard trimmed and all that type of stuff. But generally, he takes a ride to and from work on his own and goes out and does things in the community, which is something that I can't say that growing up, I don't know what my parents expected. I can vividly recall watching Life Goes On in the 90s and seeing Chris Burke, who really changed the trajectory, I think, of that shift of expect. Especially at that time, as Dr.

Kari Jones:     Manikam said, you know, that was very uncommon to see an actor with Down syndrome. Luckily, people like Chris Burke have paved that way. And oftentimes, I think some families are like, yeah, not everybody though is this celebrity. No, they're not. And we've done a podcast which in the past has not garnered near the listens that yours has, but just about really just the ordinary lives, meaning that they're just living like everybody else.

Kari Jones:     And so you don't hear about that as much. You do hear about the celebrities and actors and somebody who's run 5 marathons, but there are plenty of people that are living their lives to their fullest potential, which are extremely independent lives.

Dr Mike Patrick:     Yeah, and then I do wanna point out that while goals and pushing boundaries is really important, those boundaries and those goals are going to be quite different from 1 person to another, depending on the way in which their genetic condition is expressed. And so you also shouldn't feel like you're a failure as a parent or a support group if you you know you never get to the point where someone could live independently.

Kari Jones:     That's a great point and I'm sure other people want to talk here too but I I do want to say we also focus on expecting great things and we're going to help you dig in if that's where you can go and where you want to go, but we also talk about being enough. And that is a fine line to walk, especially when you don't know. You don't know. There's no playbook. Every person is unique and different.

Kari Jones:     Every person with Down syndrome is different and unique just like everybody else. And so I think that can be a bit daunting of you don't want to go later in life and think, should I have pushed more here? Should I have done more there? But you do need to accept that you're just a person who has limitations on your time and energy and your mental health and you have a family and you've got all these things and you are enough just caring and trying to whatever extent that you're able.

Dr Mike Patrick:     Yeah, yeah, really, really important points. We are gonna have a lot of links in the show notes for folks including 700 Children's blog post that Dr. Manikam wrote, Down Syndrome Awareness, Dispel the Misconceptions. We'll put a link to that in the show notes. But there's also a link that I really want folks to check out from the Canadian Down Syndrome Society, And they have what they call a Down syndrome Q&A, and it's just a series of common questions that pertain to common misconceptions about Down syndrome.

Dr Mike Patrick:     And there's so many of them that we just had to choose a few to include in this episode. I really liked the ones we included, but if you check out the website, there's many, many more. And so these are basically just some statements of questions of what Down syndrome folks can can do and maybe have difficulties with, or, and we may have again, our own misconceptions about what is possible and what's not. So the first 1 that we have is, can a person with Down syndrome learn to read? Mark?

Dr Mark Hall:     Absolutely. And I really appreciate what the video said on this front. The response was, of course they do. Many people with Down syndrome, whether adult or child, can learn to read just like anyone as they are entering school. People with Down syndrome may have developmental differences as well as learning style differences.

Dr Mark Hall:     So it is important for us to identify the best ways of teaching each person. And there are different resources for teachers and schools to empower them to provide the best possible educational opportunities for children and adults with Down syndrome as well as their peers.

Kari Jones:     I would take it a step further that adults with Down syndrome can also learn to read just as Dr. M referenced, you know, how much has changed since he started out in the field. Similarly, you know, the science of reading has evolved significantly, which in Ohio is a really big deal and our governor widely supports the science of reading, which is something that benefits diverse learners. And there are many adults with Down syndrome who did not receive the type of education that would benefit them in terms of literacy. And we are now seeing that.

Kari Jones:     So 1 of the things that our organization is focusing on is adult literacy for people with Down syndrome and other developmental disabilities. And there isn't a lot of research out there right now on adults with IDD learning to read, but we have seen great results so far with our program and we're very excited about it. So I definitely think that, you know, for those listening who have children, absolutely, of course, yes, as Dr. Wells indicated. But I also am excited at the emerging data that we're pulling together that shows that even later in life you know the old phrase old dog new tricks with focused attention with literacy tutors it's also possible then, and it's not too late.

Dr Mike Patrick:     Yeah, that's really exciting.

Dr Murugu Manickam:     I would also say, you know, like, it's a little bit how even education in general has gone, that it's functional. It's what you need to get by. You know, we've heard stories before where somebody who's learning to read, who has down syndrome wants to just be able to read a menu. You know, that doesn't seem like a big deal, but that's, that is a really big deal for them. They want to be able to order off the menu and not just have somebody tell them, oh, these are your options or get the same thing all the time, right?

Dr Murugu Manickam:     Because that's what they know how to order. But something as simple as that, it makes a big, big deal as to your own self-confidence, your own ability to be independent, right?

Dr Mike Patrick:     Yes, yeah, absolutely. Another thing that really helps with independence is being able to get from point A to point B in a relatively quick manner. And so what about transportation in terms of riding a bike or even driving a car, Carrie?

Kari Jones:     So riding a bike absolutely can be done. I'd say that's probably an easier lift for for across the board, right? Because taking a driving test and practicing, getting hours in and all that stuff, that's daunting for a lot of people. I have a cousin who I hope is not listening, but she didn't get her license until she was 30. She had her law degree, but not her driver's license.

Kari Jones:     So I say that to say that not to knock my cousin, but it's just, it's a, it's a very time consuming and, and big, big process. So when you look at something like riding a bike, our organization's offered a bike camp. There's I Can Shine, which is a great organization who partners with a lot of Down Syndrome associations across the country to teach people to ride their own two-wheeled bikes, which is fantastic. And we've seen great success in offering that program for over 15 years in getting someone up on a bike and then on their own two-wheeled bikes. And that's just a great way, obviously for health, but also for the social components and just the health, the mental health components of being able to be navigating your community with your peers and going out and things of that nature.

Kari Jones:     There are people with Down syndrome that can attain their driver's license. I always joke that I do not ever want to see my brother behind the wheel because I've seen him behind the wheel of a golf cart and that's enough. But I joke as a sibling because that's what siblings do. But I think for him, that would be more difficult. But there are certainly people who can and do.

Kari Jones:     So I would say that probably more often there are people that can, that maybe don't, because they access other resources or they've just got, they just have financial constraints from making that commitment. But it doesn't mean it's not possible.

Dr Murugu Manickam:     Yeah. And again, going back to that functional part, we live now in a society that has Uber and has Lyft. It has means of helping people travel from point A to point B. So maybe that's less of an issue and a limitation than it used to be. And we also live in Columbus, which doesn't have great infrastructure, but in cities that do have buses and trains and things and subways, it can be a lot easier to travel by those than it is to drive.

Dr Murugu Manickam:     So again, you have to kind of adjust to the world that you have to live in.

Kari Jones:     And that is 1 of the cool things in Ohio, the Ohio department of developmental disabilities recently made changes to their waiver funding so that Alex can use Lyft to get to work and to other places and the waiver will cover up to a certain amount of that expense, which affords him a lot more flexibility with how he lives his life. If he can take an Uber to get to a WWE event on his own, And maybe that means I don't have to go. What a beautiful gift, you know?

Dr Mike Patrick:     Yes. Well, now in addition to WWE events, people also go to jobs and use transportation to go to work. Right. What is, what, what, what is the outlook for jobs for folks with Down syndrome?

Dr Murugu Manickam:     Yeah, so again, this is 1 of those that they're just now starting to really push the boundaries on, I think. You know, again, the way education works is sometimes we educate to get people into college or to get advanced beyond that, but now kind of thinking more about vocational training and starting that training early means that if you can get somebody into the habit of doing certain things, then they can be very productive at that. You know, there is going to be intellectual disability with down syndrome, we shouldn't sugarcoat that. So there are going to be some limitations, but we have to find the right job for the right person. Right.

Dr Murugu Manickam:     And so I think that is what we're really starting to try to focus on. I will mention too, like, you know, a big part of this is communication and communication skills. Kids who, and also Down syndrome, have this reputation for being, you know, very, they're very quote-unquote happy and they are very social and personable and that somewhat is true, but it is also a stereotype, right? And that doesn't necessarily translate into them being able to communicate well with everybody. And so sometimes you do have to really work on that.

Dr Murugu Manickam:     There's another group here in central Ohio called Buddy Up for Life that really has worked really hard at helping with these communication skills, because that is the key to getting a job and holding a job and being able to do some of these things by being able to communicate well.

Kari Jones:     Improv is another great way to, and the Improvineers, they've done a lot. They're based out of Akron area, and they also work across Ohio and also in other states as well. And improv is a great way to focus on those listening skills and then replying back based on what you heard, which is a really fun way to learn how to, you know, be a better communicator. And so there are lots of different ways, but communication, Dr. M is right, is such a big part of employability.

Dr Mike Patrick:     And I would imagine that it's gonna be important for employers to treat folks with Down syndrome fairly, and maybe there needs to be support and someone making sure that they're not being taken advantage of, because we want fair pay, good working conditions. And I have seen some articles that would say that businesses tend to thrive when people with disabilities are employed, including those with Down syndrome. There does need to be someone who's advocating for them and making sure that they aren't being taken advantage of. Would you agree with that?

Kari Jones:     I definitely think that happens. I can say though that Alex being in a community setting, and we see this a lot for even on our team, we have someone with Down syndrome here. It's her, it's Stephanie's coworkers. It's Alex's coworkers that are the ones, that's the beauty of inclusion, is somebody that is around them is seeing things and saying things. And so that's really 1 of the reasons that separate classrooms that we're thankfully moving away from were actually more unsafe than safe, despite what parents, I think, believe.

Kari Jones:     And that's because you really don't have those checks and balances. And same with community settings and community employment. I think there are some perceptions that out in the community means more vulnerable, but in many ways that gives more opportunity for people who are caring and love your loved 1 to step in and say something when they see something not right, whether that's from a customer or another coworker or whatever. And so I see that that's really where that inclusion is so important.

Dr Murugu Manickam:     Yeah, yeah, absolutely. Point out, Carrie's told this story before, but like her brother's neighbors look out for him. They are constantly like making sure that he's okay and even when somebody shows up the door that they don't recognize, They're kind of making sure that he's getting protected, right? Like he's just part of their community.

Dr Mike Patrick:     Yeah, and I'm sure that, Carrie, that probably gives you a lot of peace of mind knowing that the people who surround Alex care about him.

Kari Jones:     Oh, yeah. I mean, I luckily it was dark. I was falling uncontrollably. I was so happy that, you know, the story that Dr. M's thinking about, I was locked out of Alex's house and trying to get in and I'm his landlord, full disclosure.

Kari Jones:     So I was trying to get in and I don't know if he was home or not answering or whatever. So I'm messing with the door and it's dusk and a lady comes out across the street and is like, hey, can I help you? And I'm mumbling and I'm like, kind of pissed because I can't get into the house. And I said, finally, she wasn't going anywhere. She was coming at me, not at me, but across the street.

Kari Jones:     And I said, sorry, I'm Alex's sister. I'm just trying to get into his house. And she said, oh, I'm so sorry. I didn't know who you were. And I said, no, thanks for looking out.

Kari Jones:     I appreciate it. And she said, of course, that's what we do. And then she pointed around all the other houses and said, that's what we all do. And you know, why I cried is because that's all I've ever wanted for Alex. The neighbors love him more than they love me.

Kari Jones:     They don't, they're yelling at me, you know, they don't even know I'm a neighbor, but they're all looking out for Alex's house because they want to make sure that he's not getting taken advantage of. And I'd be lying if I said when he first didn't head out that way, I thought, oh my gosh, he has down syndrome. It's all over his face. He's going to be targeted, you know, and it's been quite the opposite. I mean, the whole community does consider themselves an ally to Alex and a support to Alex and someone to keep their eyes peeled for Alex.

Kari Jones:     Yeah. Make sure that he's safe.

Dr Mike Patrick:     Absolutely. Has Alex had any relationships? So any girlfriends? Any romantic interests? And do folks with Down syndrome ever get married?

Kari Jones:     So I'm an overbearing sister, so this is important to note for the record for the millions of listeners. He has recently developed his first serious relationship and I'm trying to be cool about it, but I'm not cool at all. I'm really, really pumped. And last week was Alex's birthday and he went out to dinner with this wonderful woman and so I am so excited about it. I've recently binge watched Love on the Spectrum, which includes people with autism and Down syndrome and other developmental disabilities.

Kari Jones:     And I would highly recommend that. I don't know if you wanna plug it as a resource, but it's a very eye-opening take on what people with Down syndrome, autism, and other developmental disabilities, really what they want out of relationships. And we're not just talking friends. They want to explore their sexuality. They want to get married.

Kari Jones:     Some want kids, some don't want kids. I mean, it's quite the range. Some don't ever want to be married. They just want a long-time partner to do life with. And so Alex is blossoming at the young age of 39, which I didn't expect to see.

Kari Jones:     But he was holding out for the Bella twins, the WWE divas, so I really didn't think that anything was going to happen here. And I say that jokingly, but I really partially wasn't sure if that's what he wanted. And so I'm still not sure where it will go with Paige, but I do know that FaceTiming her and talking to her every day is now part of the fabric of his daily life. And it's really exciting to see that for him. And I would want that for any of my loved ones.

Kari Jones:     You know, any, any, my sister too, you know, I want that, that's, you know, for them to have a special someone. So it's exciting and We do see people get married and have long time significant others and some that date everybody. And you know, everything just like you would see for anybody else.

Dr Mike Patrick:     Yeah. Yeah. That's, that's really terrific. And when we compare that to past generations, you know, we're talking about folks learning to read, riding bikes, possibly getting a driver's license, having a job, living independently with help and support, and then even having relationships and possibly getting married. That was really not the experience of those impacted by Down syndrome just even maybe 1 or 2 generations ago, right?

Dr Mike Patrick:     Right, Dr. Manekin?

Dr Murugu Manickam:     Yeah, absolutely. I mean, you can even think, the parents are being protective of them. They were looking out for what they thought were their best interests, and you can understand that also from the perspective of they don't want them to get heartbroken. They don't want, they're just protecting them like any parent would want to protect their child. But usually the course would be that you kind of go through those teenage years and you start to realize they're going to be their own person.

Dr Murugu Manickam:     But we do often see, you know, that. You go through your teen years when you have Down syndrome, sometimes in your twenties and maybe even a little bit beyond that. And so you have to kind of adjust a little bit and parents are now starting to get around to that idea that, yeah, I have to stop overly being overbearing on them. I stopped, I have to stop hovering over them and let them be them. And it's also part of it, just natural progression that they will want to do that at some point.

Dr Murugu Manickam:     They're going to want to be teenagers. They're going to want to talk back to you. They're going to want independence. And for parents before it was something like, no, I've got to do what's best for them, period. But now there's coming around on, no, I've got to let them be the best version of themselves.

Dr Mike Patrick:     Yeah. Oh, go ahead.

Kari Jones:     Sorry. And across Ohio, but even beyond, there's a really a new heightened push around supported decision making, which is something that also is evolving. I think historically, parents are told, whether that's in medical offices or in classrooms or wherever they may be, when they turn 18, you need to go for guardianship. And that's a big piece that we're now really pushing that, and we're pushing that mentality, which is hard for families. And I say that, again, I am an overbearing sister that's always looking out for Alex, but I can have power of attorney over financial and medical things to be there as a resource to him without being his guardian.

Kari Jones:     So Alex does not have a guardian. He is his own guardian, so to speak. And I think that's really where we're headed. So Dr. Mike, you're kind of talking about where we've been and where we are today.

Kari Jones:     But I think talking about where we're headed is this concept of supported decision making and really encouraging, not immediately going for guardianship for your loved 1. And sometimes that's a little risky because as Dr. M indicated, some of those teenage years express themselves a little bit later, past the age of 18. And so there are many people with typical 18-year-olds that are like, I wish that I could still be guardian, you know. But That's really where I think there's a lot of opportunity on the road ahead to continue to push a self-directed life.

Kari Jones:     Alex is choosing his own life and makes decisions that I don't always agree with, but that's his right to choose that. And I think that's really hard for families. I know it's hard for me and I'm not even his parent. I'm just a sibling and so that's where I see us heading and there's a lot of, a lot. It's important that we're talking about that because when we're talking about loving somebody, it also means allowing them to be themselves and choosing what they want for their life, within reason, of course.

Dr Mike Patrick:     Yeah. Yeah. And I

Dr Murugu Manickam:     think going along those same lines, I'll push from this other side though, from the medical side, we have this fairly arbitrary number of age 18 that you become an adult, right? That you get to make your own choices. And sometimes it is actually that they might be chronologically 18, but they're not quite at the maturity of an 18 year old. I'm using quotes to say that. And so sometimes the guardianship is necessary at that point but not when they're 26 or something like that But again, I think as Carrie was kind of saying it It is a little bit of a moving target and we do need to find the right balance and it's not gonna be the same For everyone.

Kari Jones:     Yeah, I would say though. It's really hard. We know this from, and I'm not poking fun, but we know from Britney Spears, it's very difficult to get guardianship overturned. So that's really where we're pushing this concept of maybe scaffolding, you know, what is needed? What do you need to start with?

Kari Jones:     So power of attorney is much easier to add in and remove than guardianship. And so I definitely agree and think there are certainly situations where it's fairly cut and dry. I would say within the Down syndrome community though, there's a range and you can get guardianship pretty easily and pretty quickly, especially if there's an emergency, it's almost impossible to overturn it, which is why we've made this push towards the supported decision-making as a first step.

Dr Mike Patrick:     1 thing that kind of comes into my mind as you're talking about all of this is that it's so dependent upon the environment that a child grows up in, kind of where the outcome is. And so that does set up the possibility of disparity, both in terms of health, social, being able to live independently, all of those things. Mark, are there some ways that we can assure health equity and social equity for people, not only with Down syndrome, but really with disabilities in general.

Kari Jones:     So I wish that I

Dr Mark Hall:     could say there was, you know, the way, like a magic wand by which I could assure health equity for people with disabilities. But I want to sort of address different ways by which we can get to those paths. And when I talk about health equity, I want to discuss fair access and opportunity for people to achieve their health-related goals, for them to reach their fullest potential. So first of all, I would want to ensure we're listening to people with respect to what those goals are. And that way we can adequately determine what the goals are, and then in discussion with them, determining what barriers do exist.

Dr Mark Hall:     I don't want to come into a situation in which I'm assuming what the goals are and what those barriers to health are. And then from those discussions, taking time to take action in whatever role that I can in my role in healthcare, whether that's ensuring adequate access to well-equipped exam rooms to ensure we can do adequate measurements well, whether we're ensuring adequate access to assistive devices to assist with motor function or communication or even by means of ensuring adequate means of transportation to and from appointments. I recognize that there's a lot of different ways by which We can address health equity for people with disabilities, but I think that the biggest thing is just inviting conversation with everyone who would be invested in their care, whether that's people themselves, their families, the community surrounding them. That way we can invite everyone who's invested into the conversation.

Dr Mike Patrick:     Yeah. Carrie, do you have any additional thoughts on some of the specific barriers like with Alex that you've come across in terms of health and social needs?

Kari Jones:     Well, I think generally equity with health care is obviously a huge problem, again, across the country, disability or not, but from the onset we are seeing some disparities just even at you know the time of diagnosis and the timeliness of diagnosis, which is something that I think since we've last been on here with you has been published. And so that can change a lot of things. I mean, if for example, someone like Dr. M isn't bedside, talking about, you know, with we know to be best practices and delivering a diagnosis and offering supports and being there. And if that's not happening, and you're finding out from a call a week later, once you're home, that's a completely different way to start out your journey.

Kari Jones:     And then it then it evolves from there. And so when you look at that just from the onset, when you look at language barriers and just the networking that exists among the typical population. Hey, did you know that you do need to get tested for sleep apnea? And maybe a doctor told you, but now you've got a girlfriend or you know the dad's group's hanging out talking about how much sleep studies stink and and you're like, oh wait, I guess I should probably do that. But if you've got these disparities that extend beyond just what's happening inside of a doctor's office, then that just compounds.

Kari Jones:     And so 1 of the things that we're doing at the Down Syndrome Association is making sure that we're bridging connections for Latino and Hispanic families and Black and African American families and Somali families where, you know, in some of these communities, culturally, there's a lot more to navigate than what you might typically see in a central household or beyond. And so I think it's a multi-pronged approach to look at this just like it is with health care for anybody. You can equip just physicians or you can equip families, but you need to hear it more than once and you need to have someone else tell you why it's important because most people might think, why does my three-year-old need a sleep study? That sounds ridiculous. I mean, my grandpa just got 1 for the first time and he's 70 and snores until he wakes himself up.

Kari Jones:     And I'm not seeing that. So you have all these different reasons that there are just barriers to access, not even talking about insurance and transportation and some of those basic things that you would see.

Dr Mike Patrick:     And that's where an organization like the Down Syndrome Association of Central Ohio is gonna be so important to help families maybe anticipate obstacles and barriers and with the experience on how exactly to overcome those.

Kari Jones:     Yeah, we have someone on our team that's there to help with that. And we also have a contract with an external company that helps our families navigate access to healthcare. And if they can't access it with their existing coverage, they're helping on a family's behalf, find financial resources to access those services. It's a complicated system to navigate for anybody. And when you're overwhelmed with so many other things, OTPT speech, you got all these different appointments all the time.

Kari Jones:     The last thing you want to do is stay up late at night hoping you can catch someone at 8 45 p.m. To talk to them about your insurance coverage. So that's a thing too.

Dr Murugu Manickam:     Yeah. Yeah I think it has to be very intentional. I think Tosako and even Nationwide Children's has been very intentional about addressing these disparities. I was gonna even bring up another example in the area of disabilities, ableism, is this idea that we really have to give people the environment to shine. We have to give people the ability to get what they need out of a system.

Dr Murugu Manickam:     And that really is becoming a bigger mantra as part of this breaking the stereotypes that don't put limitations on people because people are gonna reach it and then you're gonna be think, oh, that's great. But really you want to create a system where they're the best version of themselves.

Dr Mike Patrick:     Yeah, yeah, definitely. Mark, there is this thing called the Lots of Socks campaign that is associated with World Down Syndrome Day this year. What is the Lots of Socks campaign? And we'll put a link to it in the show notes.

Dr Mark Hall:     So the Lots of Socks campaign is a campaign geared toward raising awareness of Down Syndrome through use of colorful or mismatched socks. So it's meant to be happening on March 21st, so World Down Syndrome Day, to make people ask, so why are you wearing those socks? And it gives you an opportunity then to talk and invite conversations like, well, I wanted to raise awareness in this respect and here's what I would like you to know about, you know, you know, what your thoughts about, you know, a person who has Down syndrome as in how you can then overcome stereotypes regarding them. I'm very excited because I get to wear some Sesame Street socks I have that are mismatched that involve Oscar the Grouch and Elmo.

Dr Mike Patrick:     Yeah, that is fantastic. And even if you don't know a lot about Down syndrome yourself, if you wear mismatched and colorful and funny socks that get, you know, someone to say, Hey, why are you wearing those socks? At the very least, you could give them the link to this podcast so that they can learn more about Down syndrome or the last 1 that we did or any of the many wonderful resources that we're gonna have in the show notes. So you don't have to be a Down syndrome expert to wear fun socks and raise awareness and improve everyone's health literacy.

Dr Mark Hall:     Absolutely.

Dr Mike Patrick:     All right, I wanna, so this is our parent podcast, but we also have a lot of pediatric providers who listen. And so I just wanted to leave pediatricians and family practice docs and nurse practitioners and such some, some resources to be able to help them provide great medical care for their kids and teenagers with Down syndrome. Marugu, what are some best practices for providing that care and what resources can primary care providers rely on?

Dr Murugu Manickam:     Yeah, so we're really fortunate, you know, the American Association of Pediatrics has had guidelines for the care of kids with Down Syndrome for the last 20 years. I think they're coming up on their third or fourth version right now and it's updated every couple of years. And those are really the best practices. These are evidence-based practices. And what I really always liked about them is that they're broken down by age.

Dr Murugu Manickam:     This is what we should do from birth to 1 month and then 1 month to 1 year and 1 year to 4 and so forth. And, you know, it really does give a little bit of a roadmap that families and primary care providers can have for what the general medical care is. But I think it's also really important to be part of your community that the community often will tell you and help you along the way too. And then more recently they've come out with adult guidelines as well. And again, evidence, best evidence is a little bit harder to come in that because we're just starting to kind of recognize where the gaps were in care.

Dr Murugu Manickam:     And so the evidence is coming along but it's coming along slow and that is an ongoing process as well to update those. But the first set came out in 2019 I think, just before the pandemic, something like that, or Carrie if you can correct me there on timing, I don't remember now.

Kari Jones:     I think it was late 2020.

Dr Murugu Manickam:     Was it 2020? Okay.

Dr Mike Patrick:     So we have the American Academy of Pediatrics Health Supervision for Children and Adolescents with Down Syndrome. We'll put a link to that in the show notes. Nationwide Children's also has some great age specific guidelines with Down Syndrome practice tools so you can look at your at your patient's age and it'll give you some ideas of the of the things that you ought to be doing in terms of providing primary care and I'll put a link to that in the show notes as well and then we also did another podcast it was 1 of our CME podcasts that is a good for category 1 CME and a CE for nurses as well, education. And that is on a care and support for children with Down syndrome. That was again, PediaCast CME episode 86.

Dr Mike Patrick:     And we'll put a link to that in the show notes as well. Now in addition to taking care of these kids from a health standpoint, we also want to think about the social aspect. And Carrie, what sort of resources are available to help both providers and families really socially support kids and teenagers who are impacted by Down syndrome? Where can they go for help?

Kari Jones:     Well, every state is unique in what they offer as a system for the developmental disability community. So that's tricky to navigate. In Ohio, we have case managers, service and support administrators, they've got a lot of different names. That can sometimes be a resource for what is available in your community. Of course I'm somewhat biased but I would say if you've got a local Down Syndrome Association in your community, I would start there.

Kari Jones:     I know with our team we say we're a concierge, so you come to us and tell us what you're looking for and we're going to help guide you to that specific thing based on where you live and what you need. And so I think that that's something that you could expect from other Down syndrome associations around the country. If you want a full listing of what those are, you can go to the National Down Syndrome Society website. You can also go to the Global Down Syndrome Foundation website and they'll list, but you could also just look up, you know, Down Syndrome Association in my area to see what's available to you. That's certainly a way to connect in as a starting point for what might be available to you.

Dr Mike Patrick:     So there may be lots of great resources online but there's nothing that really takes the place of having a support group locally. It knows the local resources and can, you know, you can meet over a coffee with someone, you know, just to talk about things. And now that the pandemic is over, that in-person connection in terms of advocacy and helping connect with the community is just super important.

Kari Jones:     Yeah, we've made really doubled down in investments in what we call outreach events and also have expanded our monthly groups that meet, whether that's moms groups, dads groups, teen group, adult, you know, whatever, all different age ranges and all over our service area, which we serve 23 counties. But you know we just hosted an event out in Zanesville, which for those of you it's like an hour and a half away and we had 70 people. And so there really is that hunger for connectivity and then they're meeting people that they can connect with when we're not there, that they maybe didn't know otherwise, whether that's a more of a mentorship type of relationship or a peer relationship. And both are welcome depending on where the person is in their life. So we definitely offer lots of virtual resources.

Kari Jones:     There is the Down Syndrome Diagnosis Network, DSDN, that connects people and families who have loved ones with Down syndrome through Facebook, but usually that's an and, not an or. Like it's not to replace that in-person connection. And so we see, as you guys are probably well aware, people come from all over to access the incredible services and medical expertise that the Nationwide Children's Hospital has to offer. Similarly, families will travel to connect in meaningful ways with other families because there's that community is what drives you all the other days that when you're feeling alone and you feel like you're facing something in your school district, or someone made fun of your child, or there are just so many highs and lows. And to do that alone can really take a toll on not only the parents, but the entire family.

Kari Jones:     And so we do as much as we can to offer those types of options and ways to connect in the community.

Dr Mike Patrick:     And we'll put links in the show notes to the National Down Syndrome Society and the Down Syndrome Congress, which has resources on both of those sites to help people sort of navigate what may be available locally for them.

Kari Jones:     Yeah, for sure, for sure. And if, you know, in Ohio, we have a nifty license plate in downsyndromeohio.org, will guide you on a map of like where you live. And some states have adopted similar things. Kentucky I know has, and there's rumors of California. I'm not sure if they did, but having a state map.

Kari Jones:     So depending on where you live, you found where your home was because there are geographic limitations, I guess.

Dr Mike Patrick:     Yeah, yeah, absolutely. And then Mark, tell us more about the care of patients with Down syndrome locally here in Central Ohio at Nationwide Children's Hospital.

Dr Mark Hall:     Absolutely. So at the Down Syndrome Clinic at Nationwide Children's Hospital, we do care for children and young adults who have Down syndrome. We try to provide comprehensive care, looking at the medical, behavioral, and developmental aspects of care. So in coming to our clinic, you may see a medical provider as well as a psychologist. In other encounters, you

Dr Murugu Manickam:     may see a medical provider as well as a psychologist. In other encounters,

Dr Mark Hall:     you may see a medical provider as well as an occupational therapist, a speech therapist, a physical therapist. So we're looking toward paths of integrating care for children with Down syndrome in many different respects. So our goal is to continue to integrate care based upon the guidelines and also listening to the needs of families in the community to ensure sufficient care coordination from a medical perspective so we can become good home within the community for children and young adults with Down syndrome.

Dr Mike Patrick:     And then again we'll have lots of resources in the show notes for folks. 1 of the primary resources that I would like to direct families that are here in Central Ohio to is the Down Syndrome Association of Central Ohio and again we'll put a link to that in the show notes for you over at pdacast.org. Carrie, how can families connect with and support the Down Syndrome Association of Central Ohio?

Kari Jones:     Well we have about a million ways. We will find you if you want to be connected to us. We will, no we don't hunt anyone down I promise. We only want, if you want to be connected to us, we are there for you. But of course on social media, we're really proud of a resource that we've recently put out for new families on Instagram.

Kari Jones:     It's called Expecting Extraordinary, which is a great way to hear some of the storytelling and the raw feelings that a new parent has upon receiving a Down syndrome diagnosis. We're of course on Instagram and Facebook with the Down Syndrome Association of Central Ohio. We've got a website dsaco.net and we're also really connected and really grateful for the connections that we have with both Nationwide Children's Hospital's Down Syndrome Clinic as well as the Ohio State University's Nisonger Center's Adult Clinic and we're really grateful for all the ways that they partner with us and they allow us to be an extension of that resource to the community And so we also get referrals that way as well. But you can just go online and submit an application and it doesn't take much and we don't charge you and we will be there as little or as much as you'd like, but I tend to think of it like kind of how a lot of families go through school. It's like you kind of get to choose how involved you are.

Kari Jones:     You can become a part of the PTA and you can get you can be all-in or you can just kind of come to the things as you feel like you can with your time and your energy. But when things go wrong at the school, we're there to help you and help figure out how to be a resource. So in that instance, I guess We're not the school. We're not the school causing the problems, but we are there to help pick up the pieces along the way. And there are always things, you know, we have families call us sometimes saying, my kid got kicked out of swim class.

Kari Jones:     And what do I do? And it's usually that type of stuff. Of course, we offer programs and, you know, educational things and potty training workshops and all kinds of stuff, but it's also being there when the unexpected pops up. And that's such a, what we've heard is such a huge value because you never really know when that stuff's gonna happen. But when it does, you wanna know you've got someone that's gonna be there for you in your corner and really helping to pick you up and lift you up.

Dr Mike Patrick:     So- And maybe it's someone who has been through that themselves. You know, there's someone else out there whose kid also got kicked out of swim team and club and they can at least tell you their experience and maybe what they did what worked what didn't work, you know that sort of thing.

Kari Jones:     Yeah, I mean, I know we're talking a lot about the challenges, but even just my 11 year olds finally potty trained, there's nothing sweeter than celebrating it with people who really get it. And I'm not knocking, you know, friends of typical children, but they just cannot understand the visceral elation that you've got when this thing that's been weighing on you for so long is finally no longer a barrier. And so it's not just kind of going through the tough, It's also having that community that's really there to celebrate with you in a way that you know they get it. And there's something inherently valuable in that.

Dr Mike Patrick:     Yeah, yeah, definitely. So once again, we are gonna have a ton of resources in the show notes for folks. So be sure to head over to pediacast.org and look for the show notes for this episode 558 everything from the Down syndrome clinic at Nationwide Children's, of course the Down syndrome Association of Central Ohio the World Down Syndrome Day We have a practice tools the health supervision guide from the American Academy of Pediatrics, that Canadian Down Syndrome Society site with the Q and A's that we talked about earlier, lots of SOX campaign. So lots, and those other those 2 pediacast episodes we've talked about too, 1 for parents that really takes a deep dive on Down syndrome itself. And then also the 1 that's for providers and a worth category 1 CME credit if you listen and that credit is still active.

Dr Mike Patrick:     So folks can check that out again. All of those links in the show notes over at pdacast.org. So once again, Dr. Mark Wells and Dr. Marugu Manikyam, both with Nationwide Children's Hospital, and Keri Jones, President and CEO of Elevated and the Down Syndrome Association of Central Ohio, thank you all for being here today.

Dr Mark Hall:     Thank you again so much for having us.

Kari Jones:     Thank you. This has been awesome.

Dr Mike Patrick:     We are back with just enough time to say thanks once again to all of you for taking time out of your day and making Pediacast a part of it. Really do appreciate that. Also thanks once again to our guests this week, Dr. Mark Wells and Dr. Marugu Manikam with Nationwide Children's Hospital and Carrie Jones with Elevated and the Down Syndrome Association of Central Ohio.

Dr Mike Patrick:     Don't forget you can find PDA Cast wherever podcasts are found. We're in the Apple and Google Podcast apps, iHeartRadio, Spotify, SoundCloud, Amazon Music, YouTube, and most other podcast apps for iOS and Android. Our landing site is pdacast.org. You'll find our entire archive of past programs there, along with show notes for each of the episodes, our terms of use agreement, and that handy contact page if you would like to suggest a future topic for the program. Reviews are helpful wherever you get your podcasts.

Dr Mike Patrick:     We always appreciate when you share your thoughts about the show, and we love connecting with you on social media. You'll find us on Facebook, Instagram, Threads, LinkedIn, Twitter, X. Simply search for Pediacast. Also, don't forget about our sibling podcast, Pediacast CME. It is similar to this program.

Dr Mike Patrick:     We turn up the science a couple notches and offer free continuing medical education credit for those who listen. And that includes doctors, nurse practitioners, physician assistants, nurses, pharmacists, psychologists, social workers, and dentists. And since Nationwide Children's is jointly accredited by all of those professional organizations, it's likely we offer the exact credits you need to fulfill your state's continuing medical education requirements. Of course, you want to be sure the content of the episode matches your scope of practice. Shows and details are available at the landing site for that program, pdacastcme.org.

Dr Mike Patrick:     You can also listen wherever podcasts are found. Simply search for PDACASTCME. Thanks again for stopping by, and until next time, this is Dr. Mike saying stay safe, stay healthy and stay involved with your kids. So long everybody!

Announcer:     This program is a production of Nationwide Children's. Thanks for listening. We'll see you next time on PediaCast.

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