WEBVTT - How Down Syndrome Works 0:00:01.440 --> 0:00:04.240 Welcome to Stuff you Should Know, a production of I 0:00:04.360 --> 0:00:13.160 Heart Radio. Hey, and welcome to the podcast. I'm Josh, 0:00:13.200 --> 0:00:15.400 and there's Chuck and Jerry's here too, and this is 0:00:15.440 --> 0:00:19.960 a good old fashioned stuff you should know and it's serendipitous. Chuck, 0:00:20.079 --> 0:00:23.479 do you wanna know why? I know why? Oh you 0:00:23.520 --> 0:00:25.880 do here? Well, I think you're probably gonna say that 0:00:25.920 --> 0:00:30.880 we're recording this during Down Syndrome Month. That is correct, sir, 0:00:31.080 --> 0:00:37.120 although it will be released uh in November probably, Yeah, 0:00:37.200 --> 0:00:40.360 but still we're recording in down Syndrome Awareness Month. And 0:00:40.479 --> 0:00:42.920 I had no idea that October was down Syndrome Awared, 0:00:44.560 --> 0:00:46.800 So I think it's pretty cool that it worked out. 0:00:46.840 --> 0:00:49.920 Anytime it works out like that. That's right. We're we're 0:00:49.960 --> 0:00:51.680 recording way ahead of time. We're trying to bulk up 0:00:51.680 --> 0:00:54.000 for our Christmas holiday break that we like to take. 0:00:54.520 --> 0:00:57.680 That's right. I voted today early voting. If that shows 0:00:57.720 --> 0:01:00.760 you when this is congrats Chuck. And it felt good 0:01:00.760 --> 0:01:02.760 to just get or done, get it out of the way. 0:01:03.720 --> 0:01:08.199 And it feels good to do this episode because down 0:01:08.280 --> 0:01:14.360 syndrome is a condition that is really really really changed. Yeah, 0:01:14.880 --> 0:01:18.399 a lot like in our lifetime, like since since the 0:01:18.480 --> 0:01:22.560 nineteen seventies. Uh, and how it's how it's viewed, how 0:01:22.560 --> 0:01:26.560 it's accepted, and actual health outcomes, and a lot of 0:01:26.560 --> 0:01:30.600 those health outcomes actually have something to do with how 0:01:30.640 --> 0:01:33.800 it's been viewed and accepted, which is remarkable and sad, 0:01:34.319 --> 0:01:37.480 you know, if you're speaking historically. Yeah, yeah, for sure. 0:01:37.640 --> 0:01:39.679 But I mean that's just the headway that's been made 0:01:39.720 --> 0:01:43.080 things to in large part the disability rights movement. Yeah, 0:01:43.240 --> 0:01:45.640 people with Down syndrome have really benefited from that, and 0:01:45.800 --> 0:01:48.520 I'm happy it can be about that too, that's right. Um, 0:01:48.880 --> 0:01:51.320 we should say from the outset, we're talking about a 0:01:51.320 --> 0:01:54.880 group of human beings who, like any group of human beings, 0:01:54.880 --> 0:02:00.440 are um, incredibly varied in talent, skills, hopes, dreams, um, 0:02:00.440 --> 0:02:04.400 medical problems, facial features, all that stuff. So to say, 0:02:04.480 --> 0:02:07.240 like you know, down syndrome people all look a certain 0:02:07.240 --> 0:02:11.040 way or they're all happy all the time, is it's 0:02:11.080 --> 0:02:14.600 stereotypical and incorrect at the very least, you know. Um, 0:02:14.680 --> 0:02:16.640 So we just want to preface all of this that 0:02:16.680 --> 0:02:21.079 we're talking in in total generalities here about Down syndrome 0:02:21.080 --> 0:02:23.200 people in general. Just keep in mind this is not 0:02:23.320 --> 0:02:26.240 some pet group, like any group of humans is not 0:02:26.320 --> 0:02:29.239 some pat group, that's right. Although I will say every 0:02:29.400 --> 0:02:31.839 kid that I've ever met who had Down syndrome, which 0:02:31.880 --> 0:02:35.919 has been a handful, have been some of the most wonderful, loving, 0:02:36.040 --> 0:02:39.600 sweetest kids I've ever met in my life, every single one. 0:02:39.720 --> 0:02:43.280 And I met some other kids who are just jerks. Yeah, 0:02:43.600 --> 0:02:46.840 for sure, for sure, And again it's a it's a stereotype. 0:02:47.080 --> 0:02:50.079 It seems to be rooted in a lot of anecdotal evidence. 0:02:50.120 --> 0:02:53.000 But just just keep in mind, like the people with 0:02:53.080 --> 0:02:56.200 Down syndrome have rich inner lives, and they're happy, sometimes 0:02:56.200 --> 0:02:59.160 they're sad, sometimes they're angry, sometimes they're frustrated, sometimes they're 0:02:59.200 --> 0:03:02.960 glad sometimes Like again, they're human beings, so just don't 0:03:03.000 --> 0:03:06.040 forget that. UM. So again we caveated that by saying 0:03:06.080 --> 0:03:08.720 we're talking in general, and this doesn't apply to all 0:03:08.760 --> 0:03:11.840 people with Down syndrome, but there are some facial characteristics 0:03:11.880 --> 0:03:15.200 that the majority of people with Down syndrome typically have 0:03:15.720 --> 0:03:20.240 that um make them readily recognizable. I think, yeah, for sure. 0:03:20.680 --> 0:03:23.079 And we should preface this also by saying that at 0:03:23.080 --> 0:03:25.679 this point it's about I've seen between one and every 0:03:25.720 --> 0:03:29.320 seven and eight hundred babies born in the United States 0:03:30.720 --> 0:03:33.360 have down syndrome. So it's kind of somewhere in that range. 0:03:34.160 --> 0:03:39.520 And if we're talking typical physical characteristics, almond shaped eyes 0:03:39.800 --> 0:03:44.520 that typically slant upward. Um. Sometimes the net can be shorter, uh, 0:03:44.560 --> 0:03:48.320 the ears can be smaller um sometimes and some of 0:03:48.320 --> 0:03:50.920 these didn't even know. There can be tiny white spots 0:03:51.640 --> 0:03:55.040 in the irises of the eyes. Um. Hands and feet 0:03:55.080 --> 0:03:59.840 maybe a little smaller. And another interesting one increase a 0:04:00.000 --> 0:04:01.920 cross the palm of the hand. Did you ever heard 0:04:01.920 --> 0:04:05.240 of that? I had not? Uh. And then small pinky 0:04:05.360 --> 0:04:09.400 fingers that sometimes can curb towards the thumb uh and 0:04:09.400 --> 0:04:13.600 are generally a little shorter than average. Yeah. They also 0:04:13.720 --> 0:04:18.200 typically have UM less than average muscle tone, and loose 0:04:18.320 --> 0:04:21.719 joints frequently UM. And one of the things that I 0:04:21.760 --> 0:04:24.200 did not realize before but I do now after doing 0:04:24.240 --> 0:04:25.880 this research is that a lot of the stuff that 0:04:25.920 --> 0:04:29.760 I think people chalk up to cognitive impairment among down 0:04:29.760 --> 0:04:34.520 syndrome people are actually the result of UM motor impairment. 0:04:34.720 --> 0:04:37.960 They're actually like, like a really good example is speech. 0:04:38.120 --> 0:04:42.920 They tend to UM become verbal later than non down 0:04:42.960 --> 0:04:46.880 syndrome kids. UM, but it's not because they don't know 0:04:46.920 --> 0:04:50.520 how to talk. It's because their mouth muscles haven't developed 0:04:50.640 --> 0:04:53.120 enough to actually talk, and that can actually lead to 0:04:53.120 --> 0:04:56.320 a tremendous amount of frustration because you're a kid who 0:04:56.440 --> 0:05:00.359 is unable to express himself for herself, and you would think, like, 0:05:00.720 --> 0:05:03.560 you know this, this kid with Down syndrome can't talk 0:05:03.800 --> 0:05:07.599 yet because of cognitive inabilities, and that's just not the case. 0:05:07.720 --> 0:05:10.719 It's not the case. Um. There are also medical issues 0:05:10.760 --> 0:05:14.599 that are typically arise when you have Down syndrome, and 0:05:14.640 --> 0:05:17.840 this is just something that you know that parents need 0:05:17.920 --> 0:05:20.760 to know if if you have a baby with Down syndrome, 0:05:20.880 --> 0:05:23.360 you're gonna get a lot of information thrust upon you. 0:05:23.920 --> 0:05:27.240 And there's a lot of information medically out there. Um. 0:05:27.520 --> 0:05:30.359 One of the big ones is a congenital heart defect, 0:05:30.400 --> 0:05:33.280 which is about half the people with Down syndrome end 0:05:33.360 --> 0:05:37.479 up having this. About half might have some hearing and 0:05:37.560 --> 0:05:41.119 vision problems, um, which can range. You know, the vision 0:05:41.200 --> 0:05:44.800 can be anything from cataracts to just regular role near 0:05:44.800 --> 0:05:50.920 sighted and far sidedness to um uh strabismus which uh, 0:05:50.960 --> 0:05:52.560 that is something I've heard of before. That's when the 0:05:52.560 --> 0:05:55.840 eyes don't track together. Yeah. A lot of people used 0:05:55.880 --> 0:05:58.960 to call it being cross eyed. Yeah, exactly, um. And 0:05:59.000 --> 0:06:04.080 then I think later in like the puberty years, they 0:06:04.120 --> 0:06:06.520 found that sometimes they can lose their sense of smell. 0:06:06.640 --> 0:06:10.280 Is that right, Yes, which is fascinating, And we'll talk 0:06:10.360 --> 0:06:12.960 a lot of a little more about that later on 0:06:13.080 --> 0:06:17.400 because they may have found a way to treat that incidentally. Um, 0:06:17.440 --> 0:06:19.680 but yeah, there seems to be like a decline in 0:06:20.200 --> 0:06:27.520 ability to smell and in cognitive abilities around puberty. Okay. Uh. 0:06:27.800 --> 0:06:34.120 Thyroid problems can happen, um, usually hyperthyroidism, UH, tummy issues, UH, 0:06:34.240 --> 0:06:37.679 sleep apnea or asthma, like some kind of general breathing issues, 0:06:39.120 --> 0:06:41.800 childhood leukemia, and then another thing that we'll talk about 0:06:41.800 --> 0:06:44.440 a little bit more. Um. And it's very sad, but 0:06:44.680 --> 0:06:50.000 Alzheimer's disease can come pretty early sometimes, right. So what 0:06:50.160 --> 0:06:52.520 we just did, Chuck, Um, from what I understand is 0:06:52.560 --> 0:06:55.360 what a doctor will basically tell a parent when they 0:06:55.360 --> 0:06:58.520 find out that their child, or their fetus or their 0:06:58.600 --> 0:07:00.880 child in the womb, however you want to put it, 0:07:01.120 --> 0:07:04.520 Um almost certainly has Down syndrome. And I saw a 0:07:04.600 --> 0:07:08.719 Down syndrome rights activist who was like, yeah, I think 0:07:08.720 --> 0:07:12.240 if you gave an expecting parent a list of all 0:07:12.360 --> 0:07:17.400 the possible medical problems any person could have like no 0:07:17.440 --> 0:07:20.800 one would have a kid. So just bear in mind that, 0:07:20.880 --> 0:07:23.440 like there's actually more it can be. It can be 0:07:23.920 --> 0:07:26.240 more pronounced than this, it can be less pronounced than this. 0:07:26.240 --> 0:07:31.000 This is just kind of the Down syndrome population just 0:07:31.080 --> 0:07:34.400 tends to have these problems more than the general population. 0:07:34.640 --> 0:07:36.600 That's a good way to put it. Uh, And we'll 0:07:36.600 --> 0:07:38.600 talk about this a little bit more too. But your 0:07:38.680 --> 0:07:44.160 chances of having a baby with Down syndrome increases as 0:07:44.160 --> 0:07:47.640 you get older. So if you're twenty five years old, 0:07:47.640 --> 0:07:51.200 the chances about one in one thousand, two hundred and fifty, 0:07:51.960 --> 0:07:55.160 and then if you're forty plus that goes to about 0:07:55.200 --> 0:07:57.880 one and a hundred UM. But we said, now it 0:07:57.920 --> 0:08:00.280 shakes out to, you know, an average of about one 0:08:00.280 --> 0:08:02.760 and seven to eight hundred when you take the full 0:08:02.880 --> 0:08:06.600 you know, birthen age range, right exactly. I also saw 0:08:06.640 --> 0:08:09.360 that somebody who has already had a baby with Down 0:08:09.360 --> 0:08:12.960 syndrome is more likely to have another baby with Down syndrome. 0:08:13.720 --> 0:08:17.840 UM and you said something about the syndrome being tied 0:08:17.880 --> 0:08:21.520 to the mom's age. I saw something like nineties something 0:08:21.560 --> 0:08:25.680 percent of Down syndrome cases are the result of UM. 0:08:25.800 --> 0:08:29.400 The donation of an extra chromosome by the mom. And 0:08:29.440 --> 0:08:32.560 I didn't understand that UM until I saw it explained 0:08:32.559 --> 0:08:37.000 by UM an author from an Atlantic article It's really good. 0:08:37.280 --> 0:08:41.079 Her name is Sophia Zang, and she explained that UM. 0:08:41.120 --> 0:08:45.600 I didn't realize this either. UM. When a woman's eggs developed, 0:08:45.640 --> 0:08:49.560 they actually developed while she's a fetus, before she's even born. 0:08:49.920 --> 0:08:53.240 Her eggs are are set and they contain one set 0:08:53.320 --> 0:08:55.720 of twenty three chromosomes. You put that together with the 0:08:55.760 --> 0:08:59.200 twenty three chromosomes carried by a male sperm when they fertilize, 0:08:59.240 --> 0:09:03.560 you get a full forty six chromosomes. But over time, 0:09:03.880 --> 0:09:07.439 as the woman ages, the proteins that hold those chromosomes 0:09:07.480 --> 0:09:11.280 in place and lock them in where they should be UM, 0:09:11.360 --> 0:09:13.360 that can degrade, and so they can kind of move 0:09:13.400 --> 0:09:17.199 around or do different things, or get copied additionally accidentally. 0:09:17.679 --> 0:09:20.560 And that is the basis of Down syndrome. It's also 0:09:20.640 --> 0:09:24.319 called trizoni one, which means that there is a third 0:09:24.480 --> 0:09:29.440 copy of UM chromosome one. That is that's Down syndrome. 0:09:29.440 --> 0:09:32.120 That's what causes Down syndrome. It's the one thing all 0:09:32.200 --> 0:09:35.600 people with Down syndrome have in common. Almost all people 0:09:35.640 --> 0:09:38.160 I should say not. It doesn't even capture the full 0:09:38.200 --> 0:09:41.079 population of down syndrome if you think about it. Yeah, 0:09:41.160 --> 0:09:44.160 and like you said, the UM, I think in nine 0:09:44.880 --> 0:09:48.000 of the cases when you were born with that extra 0:09:49.040 --> 0:09:54.280 number twenty one chromosome, it is inherited from the mother. Uh. 0:09:54.320 --> 0:09:56.840 And that is it looks like usually as a result 0:09:56.920 --> 0:10:01.000 of the degradation of that protein that's holding everything together. 0:10:01.080 --> 0:10:03.600 So it's really I never knew that. It's uh, it's 0:10:03.640 --> 0:10:08.120 pretty amazing that we know so specifically how this stuff 0:10:08.160 --> 0:10:11.720 works now. I think it was Chromosome twenty one was 0:10:11.800 --> 0:10:16.480 the second human chromosome that was fully sequenced as part 0:10:16.480 --> 0:10:20.760 of the Human Genome Project, and it's that extra chromosome. 0:10:20.840 --> 0:10:24.360 Is that number twenty one that's uh, that causes all 0:10:24.440 --> 0:10:26.840 of it. Yeah, I saw that. It's one of the 0:10:26.920 --> 0:10:31.400 smallest chromosomes, if not the smallest chromosome, but it's responsible 0:10:31.520 --> 0:10:35.280 for UM encoding anywhere from I saw two hundred to 0:10:35.360 --> 0:10:39.600 four hundred different genes, and some of those genes expressed 0:10:39.760 --> 0:10:43.400 different proteins UM that can be used in more than 0:10:43.440 --> 0:10:49.240 one reaction. There's one called nuclear hormone receptor interacting protein. 0:10:49.760 --> 0:10:52.560 Awesome name probably not a band name though I don't 0:10:52.559 --> 0:10:56.199 think so too much. It's involved in twenty different functions 0:10:56.200 --> 0:10:59.120 in the human body, just that one protein that's expressed 0:10:59.120 --> 0:11:01.520 by that by one of those two D four hundred 0:11:01.559 --> 0:11:04.120 genes on chromosome. So when you put all that together 0:11:04.160 --> 0:11:06.080 and you realize how many proteins are involved in how 0:11:06.080 --> 0:11:08.560 many different functions, that's how you get kind of this 0:11:08.679 --> 0:11:13.600 galaxy of symptoms that make up Down syndrome essentially. Yeah, 0:11:13.640 --> 0:11:16.720 and you mentioned that the trisomy twenty one doesn't even 0:11:16.760 --> 0:11:20.319 cover the full range of Down syndrome. That is because 0:11:20.480 --> 0:11:24.680 that's about the other five percent come from two other 0:11:24.720 --> 0:11:28.880 ways that you can have Down syndrome. One is translocation down, 0:11:29.400 --> 0:11:32.839 and that is when there is either a piece or 0:11:32.880 --> 0:11:36.360 a part or either a whole extra copy of number 0:11:36.360 --> 0:11:39.319 twenty one that's out there, but instead of being distinct 0:11:39.320 --> 0:11:43.920 and separate, it's attached or translocated to a different chromosome. 0:11:44.160 --> 0:11:47.840 And that's the accounts for three percent. And then uh, 0:11:47.840 --> 0:11:50.520 and this is I know a kid, a friend of 0:11:50.559 --> 0:11:53.120 our family who has mosaic down. That's the third type 0:11:53.760 --> 0:11:56.760 and that is accounts for the other two percent. And 0:11:56.800 --> 0:11:59.719 that is when um, some of the cells in your 0:11:59.760 --> 0:12:03.160 body do have the three copies of the chromosome twenty one, 0:12:03.480 --> 0:12:07.000 but others have the two, which is what you usually have. 0:12:07.440 --> 0:12:10.040 So it's sort of a mix and they're all kind 0:12:10.040 --> 0:12:12.719 of similar. But if you do have mosaic down, then 0:12:12.760 --> 0:12:16.480 you tend to generally have fewer of the typical features 0:12:16.520 --> 0:12:19.080 that you think of when you think of Down syndrome. Yeah, 0:12:19.120 --> 0:12:22.080 they represented by a percentage of cells in your body 0:12:22.160 --> 0:12:26.640 that have the third chromosome, and that that percentage reflects 0:12:26.679 --> 0:12:32.200 that UM. Also that mosaic um down syndrome occurs after 0:12:32.679 --> 0:12:36.280 the egg is fertilized, so it occurs during fetal development, 0:12:36.360 --> 0:12:40.840 like a cell divides um differently, and that that third 0:12:40.920 --> 0:12:43.720 chromosome is generated in some of the cells. That's why 0:12:43.760 --> 0:12:45.520 some of the cells go on to divide. They didn't 0:12:45.559 --> 0:12:49.840 have that that um that different division. They had regular 0:12:49.920 --> 0:12:53.680 too chromosome or two pair chromosome division. Right. So UM, 0:12:53.760 --> 0:12:59.160 that explains one of the mysteries I think behind Down syndrome, 0:12:59.200 --> 0:13:02.000 which is how, um, you could have identical twins and 0:13:02.400 --> 0:13:04.360 just one of them has Down syndrome and the other 0:13:04.400 --> 0:13:08.600 one doesn't. Oh yeah, did you just figure that out? 0:13:10.000 --> 0:13:14.560 Like is this breaking news from you? Oh? I see, Uh, 0:13:14.880 --> 0:13:18.760 maybe maybe it's my it's my little contribution to the field. 0:13:19.000 --> 0:13:21.480 All right. I think that's a good sort of general overview. 0:13:21.480 --> 0:13:23.920 Maybe we should take a break and we'll talk a 0:13:23.960 --> 0:13:26.439 little bit about I'm just gonna go and say it, 0:13:26.520 --> 0:13:30.120 the shameful history of how humans dealt with people with 0:13:30.160 --> 0:14:00.559 Down syndrome. Sorry, geh. So, if you're talking human history, 0:14:00.600 --> 0:14:04.360 there has always been it seems like Down syndrome. Um, 0:14:04.640 --> 0:14:08.080 you you dug up this was that like a clay 0:14:08.120 --> 0:14:12.199 sculpture or something. I didn't dig it up, I think 0:14:12.200 --> 0:14:15.120 in archaeol just did. But yes, I found it on 0:14:15.160 --> 0:14:17.800 the internet. That counts. Friend, dug it up on the internet. 0:14:18.280 --> 0:14:21.680 That was from five d CE. That it very much 0:14:21.680 --> 0:14:24.360 seems to be someone with Down syndrome. Uh. There are 0:14:24.400 --> 0:14:27.120 also been other various works of art. There's a very 0:14:27.160 --> 0:14:30.480 famous Flemish painting called the Adoration of the Christ Child 0:14:31.200 --> 0:14:34.520 from fifteen fifteen, where there's an angel, quite a few angels, 0:14:34.520 --> 0:14:37.600 but one of them seems to have the physical characteristics 0:14:37.640 --> 0:14:40.880 that we associate with down. So it has been there 0:14:41.000 --> 0:14:45.320 for a long time, but very sadly if you were, 0:14:46.600 --> 0:14:48.840 I mean, it wasn't even that long ago. Certainly if 0:14:48.880 --> 0:14:52.000 you were, you know, really far back history, your chances 0:14:52.040 --> 0:14:56.240 of living with Down was uh, pretty low. Um for 0:14:56.560 --> 0:14:59.440 you know, living any any kind of life. If you 0:14:59.520 --> 0:15:01.920 lived at all, it's a very short lifespan back in 0:15:01.960 --> 0:15:05.480 those days, and then if you did manage to live, 0:15:05.560 --> 0:15:09.560 you were probably sort of cast out of society and institutionalized. 0:15:10.080 --> 0:15:12.960 And this kind of stuff was going on up until 0:15:13.000 --> 0:15:16.120 like the late sixties and early seventies. Yeah, I think 0:15:16.160 --> 0:15:19.760 in nineteen sixty in the United States, if you had 0:15:19.760 --> 0:15:23.720 Down syndrome, your life expectancy was ten years old. And 0:15:23.760 --> 0:15:26.320 again any time you hear like, oh well, the people 0:15:26.360 --> 0:15:28.680 in olden days just lived to be thirty five. Now, 0:15:29.160 --> 0:15:33.480 so many children died at birth that its skewed the 0:15:33.600 --> 0:15:38.560 average life expectancy that far downward. And that's understandable, especially 0:15:38.720 --> 0:15:42.920 you know in pre medical days, um, because so many 0:15:42.960 --> 0:15:46.040 I think like half are born with congenital heart defects 0:15:46.360 --> 0:15:48.520 and that you have to go undergo surgery starting about 0:15:48.520 --> 0:15:50.760 three days after you're born when you have something like 0:15:50.800 --> 0:15:53.840 that to correct it, and it takes multiple surgeries. And 0:15:53.880 --> 0:15:56.680 before the advent of that, yeah, that was you were 0:15:56.680 --> 0:15:58.920 not going to live very long as a baby because 0:15:58.960 --> 0:16:01.040 you had a congenital defect and no one had any 0:16:01.080 --> 0:16:04.280 idea what that even was, let alone how to treat it. Yeah, 0:16:04.520 --> 0:16:06.800 it's UM. If you wonder where it gets his name. 0:16:07.120 --> 0:16:10.520 In eighteen sixty two, there was a English physician named 0:16:10.600 --> 0:16:13.960 John langdon Down that's where the name comes from, who 0:16:14.080 --> 0:16:17.160 first identified it. UH. And it was sort of an 0:16:17.160 --> 0:16:19.840 important distinction at the time because it did make a 0:16:19.880 --> 0:16:23.840 distinction between UM, what at the time they categorized as 0:16:24.120 --> 0:16:28.920 a mental disability and an actual sort of well, you know, 0:16:28.960 --> 0:16:33.000 it took a long time before they identified the chromosome issue, 0:16:33.040 --> 0:16:35.600 but UM, it was a big distinction at the time, 0:16:35.800 --> 0:16:39.920 and for many many years they UH in this. You know, 0:16:39.920 --> 0:16:42.560 Olivia helped us put this together, points out that this 0:16:42.640 --> 0:16:45.840 is very offensive in many different ways. But the term 0:16:45.880 --> 0:16:49.200 mongoloid was used UH, and this could be an interesting 0:16:49.320 --> 0:16:52.760 short stuff. It was based on the idea that if 0:16:52.800 --> 0:16:56.680 you were white and you had Down syndrome, then you 0:16:56.760 --> 0:17:00.480 might resemble someone who is East Asian or what they 0:17:00.560 --> 0:17:04.760 referred to as Mongolian back then, which was and this 0:17:04.800 --> 0:17:06.320 is the part that I think would be interesting is 0:17:06.400 --> 0:17:13.960 Johan Blueman Box racial classification UH system, which was Caucasian, Mongolian, 0:17:14.000 --> 0:17:19.240 which was East Asian Malayan, which is Southeast Asian, Ethiopian, 0:17:19.280 --> 0:17:23.080 which was basically any part of Africa, and then American, 0:17:23.240 --> 0:17:28.760 which meant indigenous Americans. Um. Obviously that's super outdated, but 0:17:28.920 --> 0:17:31.000 I think it could make for an interesting, like historical 0:17:31.040 --> 0:17:33.440 short stuff. I think it might actually be its own 0:17:33.840 --> 0:17:36.800 um episode because I was thinking into it. Yeah, and 0:17:36.840 --> 0:17:41.040 apparently it's still generally respected even though it is the 0:17:41.440 --> 0:17:44.399 terminology is outdated, and of course there's way more um 0:17:44.520 --> 0:17:47.600 subcategories of people, and the idea of race is even 0:17:47.920 --> 0:17:51.280 considered a social construct now. But Bluemenbach is considered the 0:17:51.359 --> 0:17:56.840 first scientist to purposefully divorce racism from science. Yeah, so 0:17:56.960 --> 0:18:00.800 as racist as you know, calling someone Mongolian out seems 0:18:01.600 --> 0:18:05.840 um like his purpose was to prevent that, to to 0:18:06.080 --> 0:18:11.119 just create a specifically scientific approach that's not racist to 0:18:11.480 --> 0:18:14.320 um two different types of people. Yeah, maybe we should 0:18:14.359 --> 0:18:17.199 tackle that. The long and short of this, though, is 0:18:17.280 --> 0:18:21.000 that the term mongoloyd was around, Like I remember hearing 0:18:21.040 --> 0:18:22.919 that word when I was a kid. Yeah. That was 0:18:23.000 --> 0:18:27.399 Divo's first single in Yeah, that was the first single 0:18:27.400 --> 0:18:31.560 they ever released, was Mongoloyd. I love Devo? Yeah, I mean, 0:18:31.560 --> 0:18:36.720 otherwise they're they're pretty great, good feeling what a song. Yeah. 0:18:36.920 --> 0:18:38.760 The more I listen to them more, I'm like, these 0:18:38.840 --> 0:18:41.239 guys were just amazing. And then to think of like 0:18:41.320 --> 0:18:44.159 them performing in the late seventies and early eighties and 0:18:44.240 --> 0:18:47.200 coming up with this, it's like they weren't working off 0:18:47.240 --> 0:18:49.400 of anybody else's stuff. It seemed like they were their 0:18:49.400 --> 0:18:51.960 own group. This good kids music too. By the way, 0:18:51.960 --> 0:18:53.480 if you're a parent and you have a young kid 0:18:54.280 --> 0:18:56.760 and you want to introduce him to cool music, like 0:18:56.920 --> 0:18:59.920 something about Diva like really made my daughter dance or 0:19:00.000 --> 0:19:03.200 early on, oh do whip it maybe the best song 0:19:03.920 --> 0:19:06.560 to dance to and definitely to run to as well. 0:19:07.359 --> 0:19:12.040 I have one more little music tidbit um uh music 0:19:12.119 --> 0:19:16.080 titles that were unkind to UM people with down syndrome, Uh, 0:19:16.320 --> 0:19:19.440 black Eyed Peas. Do you know the UM song Let's 0:19:19.480 --> 0:19:23.640 Get It Started? Yeah, that was a re record. The 0:19:23.720 --> 0:19:26.360 NBA came and said, hey, can you re record your 0:19:26.400 --> 0:19:29.920 song Let's get are worded? Which is the original title 0:19:29.960 --> 0:19:33.840 of it? Oh? Really yes, And they re recorded it 0:19:34.200 --> 0:19:36.680 for the NBA and ended up releasing it as a single. 0:19:36.680 --> 0:19:38.840 It became a huge hit. But that is not Let's 0:19:38.840 --> 0:19:41.320 Get It Started as not the original title of that 0:19:41.359 --> 0:19:46.639 song or original lyrics. That's true, and that was the 0:19:46.720 --> 0:19:49.600 two thousand three that is a black eye on the 0:19:49.640 --> 0:19:58.239 black eyed peas sor uh. So that term, the term 0:19:58.280 --> 0:20:01.919 mongoloid um, was actually sent to the World Health Organization 0:20:02.520 --> 0:20:07.840 in nineteen sixty uh from the nation of Mongolia and said, hey, 0:20:07.880 --> 0:20:10.359 maybe you shouldn't be using this word anymore. But it 0:20:10.359 --> 0:20:11.879 took a little while for it to catch on that 0:20:11.920 --> 0:20:14.240 we shouldn't be using that word. Uh. And now we 0:20:14.320 --> 0:20:16.960 just say down syndrome like we should. Yeah, it's not 0:20:17.080 --> 0:20:19.600 a downy or a down person or anything like that's 0:20:19.600 --> 0:20:23.280 a person with down syndrome like any any other condition. UM. 0:20:23.320 --> 0:20:25.800 And that's also why because it's named after John Langdon 0:20:25.840 --> 0:20:29.160 down why it's a capital D lower case S when 0:20:29.200 --> 0:20:31.280 you spell it out. Yeah, And you know a lot 0:20:31.320 --> 0:20:34.600 of people say downs, which is incorrect. But I have 0:20:34.720 --> 0:20:37.720 seen that that has kind of become kind of accepted, 0:20:38.400 --> 0:20:40.680 and I think it felt a little more like resigned 0:20:40.720 --> 0:20:45.360 to than except you can see that so, Chuck. One 0:20:45.400 --> 0:20:48.440 of the things that UM is just a real blemish 0:20:48.480 --> 0:20:51.679 on the history of humanity, and I think UM, I 0:20:51.720 --> 0:20:55.720 hope becomes even more so as we progress as a species. UM. 0:20:55.840 --> 0:21:00.560 People with down syndrome. Uh, we're targeted for you an assists. 0:21:00.640 --> 0:21:03.720 Like right out of the gate, they were an obvious 0:21:03.760 --> 0:21:09.240 population to target. They were considered um completely dependent on society, 0:21:09.520 --> 0:21:12.840 a burden to their families, UM. And the premise was 0:21:12.920 --> 0:21:17.399 that you either needed to institutionalize them essentially from birth, 0:21:17.640 --> 0:21:20.520 like back in the day not too long ago, when 0:21:20.680 --> 0:21:24.879 you figured out that your baby had Down syndrome, you said, 0:21:25.280 --> 0:21:27.359 here you go, state, thank you for taking care of 0:21:27.359 --> 0:21:29.320 this child for the rest of his or her life. 0:21:29.560 --> 0:21:32.760 We're washing our hands of him or her or they 0:21:32.760 --> 0:21:38.960 were um sterilized against their will or both. Yeah, it's 0:21:39.160 --> 0:21:42.359 very sad and shameful. And uh, I mean that that 0:21:42.440 --> 0:21:44.120 that's sort of what we've seen in time and time 0:21:44.160 --> 0:21:49.160 again of any kind of UM mental issues that people had. 0:21:49.600 --> 0:21:51.439 It was just like, you know, put them behind closed 0:21:51.440 --> 0:21:55.480 doors where everyone else can just not think about it anymore. Right, 0:21:56.119 --> 0:21:59.359 So that's I mean, they were neglected, They were probably beaten. 0:21:59.400 --> 0:22:02.680 In many K races, they had no access to medical 0:22:02.760 --> 0:22:06.400 care or any kind of stimulation. They were just basically 0:22:06.480 --> 0:22:09.720 left to rot for the for the sole reason that 0:22:09.840 --> 0:22:12.320 they had Down syndrome. And again this was based on 0:22:12.480 --> 0:22:16.080 really faulty information the idea that they would never speak, 0:22:16.119 --> 0:22:18.520 that they couldn't walk correctly, they would never be able to, 0:22:19.080 --> 0:22:23.919 um uh perform any kind of like socially productive work 0:22:24.000 --> 0:22:26.840 or anything like that. There they were just to be 0:22:27.000 --> 0:22:30.439 left in these institutions. And finally, in the sixties, the 0:22:30.480 --> 0:22:34.440 whole de institutionalization movement that really started to take hold 0:22:34.760 --> 0:22:37.960 that we kind of referenced in the rosen hand Han 0:22:37.960 --> 0:22:43.440 experiment episode, UM that that benefited people with Down syndrome too, 0:22:43.560 --> 0:22:46.320 And so they were released from the institutions and were 0:22:46.400 --> 0:22:50.280 now raised in at home in the community, and almost 0:22:50.359 --> 0:22:55.160 immediately the life expectancy for Down syndrome people skyrocketed because 0:22:55.160 --> 0:22:57.919 it turned out the greatest risk factor for death for 0:22:58.119 --> 0:23:03.040 Down syndrome person was being institutionalized. That's how mistreated they were. Man, 0:23:03.359 --> 0:23:08.720 I mean that that's hard to even uh swallow, you know, like, hey, 0:23:08.800 --> 0:23:11.840 it turns out if we care for people and treat 0:23:11.880 --> 0:23:15.280 them as human beings and give them love and healthcare, 0:23:15.760 --> 0:23:20.760 then they'll thrive and survive. It's really sad, but it's 0:23:20.800 --> 0:23:25.320 it's actually, you know, since the nineteen seventies, um, it's 0:23:25.640 --> 0:23:29.720 not sad, it's been wonderful. By two thousand seven, Americans 0:23:29.720 --> 0:23:33.720 with Down syndrome live an average of forty seven. Um. 0:23:33.760 --> 0:23:36.959 I've seen that number average go as high as sixty. 0:23:37.400 --> 0:23:39.760 I think there was an Australian study that edited about 0:23:39.760 --> 0:23:44.080 sixty Between nineteen seventy nine and two thousand three, the 0:23:44.160 --> 0:23:46.840 rate of death within the first year dropped from eight 0:23:46.840 --> 0:23:50.760 point five percent to five percent. And the quality of 0:23:50.760 --> 0:23:54.800 life has just been there's been a huge sea change. Uh. 0:23:54.880 --> 0:23:57.000 And we're like I said, we're talking within our lifetime. 0:23:57.040 --> 0:24:00.760 This was like pre nineteen eighties. Keep we're still being 0:24:00.800 --> 0:24:06.639 institutionalized u from infancy infancy sometimes so they were you know, 0:24:07.440 --> 0:24:10.680 not necessarily banned, but just sort of weren't brought out 0:24:10.680 --> 0:24:12.800 in public, weren't taken to the movies, weren't taken to 0:24:12.880 --> 0:24:19.080 parks and things like that. Even in Benjamin Spock, you know, 0:24:19.160 --> 0:24:22.200 the very famous doctor Spock who wrote the famous baby book. 0:24:23.080 --> 0:24:26.280 This was a you know, supposedly progressive person at the time, 0:24:27.200 --> 0:24:32.240 said that, uh, mongoloid babies should immediately be institutionalized, since 0:24:32.440 --> 0:24:35.280 if the infant merely exists at a level that is 0:24:35.320 --> 0:24:38.119 hardly human, it is much better for the other children 0:24:38.160 --> 0:24:42.040 and the parents to have him cared for elsewhere. Yeah, 0:24:42.200 --> 0:24:45.800 and This is Dr Spock, who was considered extremely progressive 0:24:46.080 --> 0:24:49.400 and arguably the person who ruined the baby boomer generation 0:24:49.440 --> 0:24:53.240 by giving poor advice to their parents. But regardless, he 0:24:53.320 --> 0:24:55.280 was a very progressive voice. And this is what he 0:24:55.359 --> 0:25:00.800 was saying. That's how widely UM assumed this. This, this 0:25:01.040 --> 0:25:05.680 whole idea about down syndrome people was that late in 0:25:05.680 --> 0:25:09.400 in the century. So UM Again, in the sixties and seventies, 0:25:09.400 --> 0:25:11.960 the disability rights movement comes along and says, hey, these 0:25:11.960 --> 0:25:15.440 people are being mistreated for no good reason. If you, UM, 0:25:15.600 --> 0:25:18.280 you know, if you visit with somebody who has been 0:25:18.359 --> 0:25:22.240 raised at home with parents who send them to school 0:25:22.680 --> 0:25:26.720 and care about their simulation, they're actually like their i 0:25:26.880 --> 0:25:30.840 Q starts to increase tremendously, I think. UM. There was 0:25:30.880 --> 0:25:34.760 a study from nine that found that UM down syndrome 0:25:35.160 --> 0:25:38.560 people raised in institutions had an average i Q of 0:25:38.560 --> 0:25:42.400 twenty to thirty UM and then those raised at home 0:25:42.680 --> 0:25:47.800 with stimulation had i Q of about fifty five. And 0:25:47.800 --> 0:25:50.639 as people kind of change their perception, or I should says, 0:25:50.680 --> 0:25:54.280 down syndrome people changed other people's perception more and more. 0:25:54.720 --> 0:25:58.760 They started to graduate from high school, graduate from college, 0:25:58.800 --> 0:26:03.080 get driver's licensees, get married UM and just start living 0:26:03.119 --> 0:26:07.200 more and more normal lives. Again, depending on the amount 0:26:07.400 --> 0:26:11.600 of UM self sufficiency they're able to maintain. Some people 0:26:11.640 --> 0:26:13.440 with down syndromes live with their parents for the rest 0:26:13.440 --> 0:26:16.080 of their lives. Some people have an apartment with their buddies, 0:26:16.080 --> 0:26:19.040 some live alone. And it's just again, it's a spectrum 0:26:19.200 --> 0:26:21.560 of what they're capable of or even what they are 0:26:21.760 --> 0:26:24.280 interested in. Yeah, and I was about to say, I'd 0:26:24.320 --> 0:26:26.320 love to see that study today because that was all 0:26:26.359 --> 0:26:29.639 the way in ninety nine. But thankfully you're not going 0:26:29.720 --> 0:26:33.080 to get that study today because they're no longer institutionalized 0:26:33.119 --> 0:26:35.879 like that. Yeah, there's one part of that study that 0:26:36.440 --> 0:26:39.080 I bet that they could just do i Q studies 0:26:39.080 --> 0:26:40.639 and a bet that would be even higher. Is what 0:26:40.680 --> 0:26:42.600 I was trying to get to. If it was a 0:26:42.640 --> 0:26:46.000 good study, you could reproduce it using the same methodology 0:26:46.040 --> 0:26:49.320 today and you'd be able to compare the institutionalized to 0:26:49.480 --> 0:26:52.120 that you know, stimulated at home. Yeah, that's a good point. 0:26:52.920 --> 0:26:56.600 So let's talk a little bit about UH. Development and 0:26:56.640 --> 0:26:59.800 this is sort of all over the map intellectual if 0:26:59.800 --> 0:27:04.280 it's development social development, and again these are generalizations, UH 0:27:04.320 --> 0:27:06.040 and you know you'll see in a lot of cases 0:27:06.080 --> 0:27:10.679 that UH, kids with Down syndrome can be behind in 0:27:10.720 --> 0:27:13.800 some ways by just a little bit, sometimes behind by 0:27:13.800 --> 0:27:17.600 a little bit more, sometimes ahead in other areas. UH. 0:27:17.640 --> 0:27:22.160 And it starts at birth basically UM in infancy, things 0:27:22.160 --> 0:27:25.119 like feeding UH. And this is because of the muscle 0:27:25.119 --> 0:27:30.160 tone issues UM and hypermobility. Things like UM feeding during 0:27:30.200 --> 0:27:33.960 infancy can cause problems or you know, problems with feeding 0:27:34.080 --> 0:27:37.600 which can lead to constipation problems. UH. They may be 0:27:37.720 --> 0:27:40.840 a little smaller physically at first and be a little 0:27:41.040 --> 0:27:44.600 slower on the growth curve uh than their peers typically 0:27:44.600 --> 0:27:47.240 develop UM. But as they you know, they kind of 0:27:47.240 --> 0:27:50.560 catch up as they get older, and that generally improves 0:27:50.680 --> 0:27:55.520 and UM those developmental milestones you know, feeding themselves, dressing 0:27:55.520 --> 0:27:58.920 and stuff like that. Using the toilet you mentioned speaking, 0:27:59.240 --> 0:28:02.240 they might happen a little bit later, right, I saw 0:28:02.280 --> 0:28:06.160 it explained as they they can and do develop skills 0:28:06.200 --> 0:28:08.919 throughout their lives, but they just reach goals at a 0:28:08.960 --> 0:28:13.160 different pace, and all kids reach goals at different paces. 0:28:13.200 --> 0:28:17.359 So it's just about setting expectations, is apparent. One of 0:28:17.400 --> 0:28:20.359 the things that is available now that is really helping 0:28:20.400 --> 0:28:23.479 to increase not just life expectancy but also quality of 0:28:23.520 --> 0:28:26.680 life among people with Down synd room is occupational therapy. 0:28:27.119 --> 0:28:29.680 They've figured out that basically the moment that you realize 0:28:29.680 --> 0:28:32.760 that your child has Down syndrome after they're born, UM, 0:28:32.880 --> 0:28:35.800 you want to start different kinds of therapy. I think 0:28:35.840 --> 0:28:38.840 occupational to start because it's so hands on and physical. 0:28:39.280 --> 0:28:41.040 But UM, some of the things I saw that you 0:28:41.080 --> 0:28:44.040 can do at home because they have smaller fingers and 0:28:44.080 --> 0:28:48.440 smaller hands and pinkies that curve on average. UM, one 0:28:48.520 --> 0:28:50.680 of the things you want to do is help them 0:28:50.800 --> 0:28:54.240 learn to hold a pencil properly or you know, manipulate 0:28:54.320 --> 0:28:56.800 things with their hands better. So you have them play 0:28:56.880 --> 0:29:02.840 with plato or UM paste areos to UM like UM 0:29:03.080 --> 0:29:06.000 construction paper or something like that. Stuff that like you 0:29:06.000 --> 0:29:09.160 you use like the very fine motor skills for and 0:29:09.160 --> 0:29:13.120 then also ones that require like big motor skills like 0:29:13.240 --> 0:29:16.400 UM I saw. Focusing on your core is really important 0:29:16.680 --> 0:29:19.320 because there's a lot of people with downs RUM are 0:29:19.320 --> 0:29:21.800 considered to not be able to engage in self care 0:29:22.120 --> 0:29:26.600 because again it's a cognitive disorder disability. It's actually not 0:29:26.640 --> 0:29:30.480 necessarily the case in all cases. UM, It's that their 0:29:30.560 --> 0:29:33.640 core is not strong enough or toned enough to hold 0:29:33.680 --> 0:29:36.040 themselves up while they put on a sock or tie 0:29:36.080 --> 0:29:39.160 their shoe or something like that. Yeah. Absolutely, So that's 0:29:39.160 --> 0:29:42.120 what occupational therapy does, is helped get that stuff in 0:29:42.240 --> 0:29:44.040 order so that they can start to excel and hit 0:29:44.080 --> 0:29:47.160 those goals sooner. And the occupation in this case is 0:29:47.360 --> 0:29:54.560 being a baby. That's your job. Uh. Social functioning, Um, 0:29:54.600 --> 0:29:57.000 it's usually a little less delayed. If you have a 0:29:57.040 --> 0:30:00.640 baby with Down syndrome. You might be looking at a 0:30:00.680 --> 0:30:04.640 week or two sometimes for things like recognizing faces, looking 0:30:04.680 --> 0:30:09.200 at faces, smiling back at somebody, recognizing a smile, uh, 0:30:09.320 --> 0:30:12.840 communicating through just like gestures and you know that Google 0:30:12.880 --> 0:30:16.040 Gaga type of stuff. Uh. You know, could just be 0:30:16.080 --> 0:30:19.400 a week or two. Some kids, UH might have a 0:30:19.400 --> 0:30:23.080 greater reading ability than might be typical for someone uh 0:30:23.200 --> 0:30:26.680 their age or at their cognitive level. Um, the delays 0:30:26.720 --> 0:30:29.120 and spoken language we've talked about a little bit. Uh, 0:30:29.200 --> 0:30:31.240 Their math and their number skills might be a little 0:30:31.240 --> 0:30:34.400 bit behind, usually about two years behind the reading skills. 0:30:34.840 --> 0:30:37.400 But if the reading skills are a little advanced, you know, 0:30:37.440 --> 0:30:39.520 it might not average out to be that much farther 0:30:39.600 --> 0:30:43.080 behind than their peers. UH. And then you know, there's 0:30:43.080 --> 0:30:46.080 so many different ways kids learn these days, and that 0:30:46.240 --> 0:30:50.040 kids are being taught according to their needs, which is 0:30:50.800 --> 0:30:53.600 the biggest like breakthrough in education of the past, like 0:30:53.880 --> 0:30:57.400 a couple of decades, is recognizing that, like not every 0:30:57.480 --> 0:30:59.880 kid is in a box and learns the exact same way. 0:31:00.440 --> 0:31:04.240 And if you have down syndrome, then you have much 0:31:04.280 --> 0:31:09.480 better visual processing and visual learning skills than maybe with words. 0:31:09.520 --> 0:31:12.800 So you're gonna be working with your teacher either, you know, 0:31:12.880 --> 0:31:16.680 sometimes a special classrooms, sometimes in just the regular classroom 0:31:16.720 --> 0:31:19.000 to work with that uh, work with that kid to 0:31:19.480 --> 0:31:22.160 you know, teach them a little differently. Yeah, I think 0:31:22.280 --> 0:31:25.960 um integrating classrooms together with people of different cognitive levels, 0:31:26.040 --> 0:31:30.280 especially you know, if you're now teaching people differently rather 0:31:30.320 --> 0:31:32.960 than making them all conformed to one thing, that seems 0:31:32.960 --> 0:31:35.760 like that would allow for integrated classrooms a lot more, 0:31:36.000 --> 0:31:38.800 which I think is absolutely wonderful. Yeah, and you know, 0:31:38.840 --> 0:31:40.800 it happens in all kinds of ways. You talk to 0:31:40.880 --> 0:31:44.720 your school, see what kind of support that you can get. Uh. 0:31:44.800 --> 0:31:47.760 Sometimes it's just regular class for most of the day, 0:31:47.840 --> 0:31:50.320 and then they're specialists who come in for a couple 0:31:50.360 --> 0:31:54.560 of hours, maybe every day, sometimes a few days a week. Uh, 0:31:54.600 --> 0:31:57.880 if you're um, if you're able to, sometimes you can 0:31:57.960 --> 0:32:00.880 hire someone privately to to ass with stuff like that. 0:32:01.000 --> 0:32:04.200 But it's it's just you know, be in good contact 0:32:04.240 --> 0:32:06.560 with your school and with your teachers, and it's just 0:32:06.600 --> 0:32:09.240 a different scene than it was when we were kids. Yeah, 0:32:09.280 --> 0:32:11.760 and um, you can thank your federal government for passing 0:32:11.840 --> 0:32:16.280 laws that banned discrimination in public schooling against cognitive disabilities. 0:32:16.320 --> 0:32:19.000 The Idea Act and then the A D A M 0:32:19.120 --> 0:32:24.360 both guarantee um quality public schooling for kids of different 0:32:24.360 --> 0:32:29.680 cognitive abilities and uh, in fact like tailored schooling depending 0:32:29.680 --> 0:32:32.560 on their needs. Which hats off to that one, because 0:32:32.640 --> 0:32:34.960 I can tell you not every state would offer that 0:32:35.040 --> 0:32:38.200 if that weren't a law. No, they wouldn't took. I 0:32:38.280 --> 0:32:40.240 had one foot up on a soapbox. I'm gonna step 0:32:40.240 --> 0:32:43.560 back down. That was very close, very close. So let's 0:32:43.560 --> 0:32:45.200 take a break and I can shake it off. How 0:32:45.200 --> 0:33:14.440 about that? All right, We'll be right back. Okay, we're back, Chuck. 0:33:14.520 --> 0:33:16.520 And before we get started, we just want to give 0:33:16.520 --> 0:33:19.520 a little shout out to our ongoing pledge drive for 0:33:19.560 --> 0:33:23.400 our friends, A Cooperative for Education, right, that's right, the 0:33:23.840 --> 0:33:26.360 great nonprofit in Guatemala that we've been working with for 0:33:26.440 --> 0:33:30.360 many years. Let us know that the stuff you should know. 0:33:30.480 --> 0:33:33.400 Army since we started working with him, has donated just 0:33:33.440 --> 0:33:35.920 about a hundred thousand dollars shy of a million bucks. 0:33:36.360 --> 0:33:38.720 So we want to help them get to that million 0:33:38.720 --> 0:33:44.000 dollar mark. And there's a really quick easy way to donate, right. Yeah. 0:33:44.120 --> 0:33:47.040 They set up a page just for you to go donate. Um. 0:33:47.080 --> 0:33:51.120 It's Cooperative for Education dot org slash s y s 0:33:51.200 --> 0:33:53.440 K and it's a very painless process. Just chip in 0:33:53.480 --> 0:33:56.560 whatever you can and if everybody chips in whatever they can, 0:33:56.680 --> 0:33:58.240 then we'll come up with a bunch of money for 0:33:58.320 --> 0:34:00.360 COED to use to help kids in the mall to 0:34:00.440 --> 0:34:03.640 break the cycle of poverty. That's right. Should we talk 0:34:03.680 --> 0:34:08.359 about down syndrome testing, let's because it's a fairly new thing. 0:34:08.840 --> 0:34:12.160 Um until I think that really kind of the eighties 0:34:12.200 --> 0:34:15.040 is when it really started to becoming much more common. 0:34:15.320 --> 0:34:18.960 You were you had no real idea whether your baby 0:34:19.120 --> 0:34:20.720 was going to have down syd um or not until 0:34:20.719 --> 0:34:23.520 they were born, even sometimes after they were born. That's right, 0:34:23.800 --> 0:34:25.719 But now that's different, right, they have different kinds of 0:34:25.760 --> 0:34:28.000 tests that they can do. Is early is nine to 0:34:28.120 --> 0:34:31.120 thirteen weeks I think, yeah, there are a few different 0:34:31.160 --> 0:34:34.040 kinds of tests that can be used together to make 0:34:34.080 --> 0:34:38.000 this determination or separately or uh, well, I guess those 0:34:38.040 --> 0:34:41.120 are the two ways. Um. The first thing that you 0:34:41.239 --> 0:34:43.000 might start with is a blood test, and this is 0:34:43.040 --> 0:34:47.239 between nine and thirteen weeks gestation, and that is measuring 0:34:47.960 --> 0:34:53.000 um plasma protein pregnancy plasma protein A, which is called 0:34:53.080 --> 0:34:56.319 p A p p A. And then something we've talked 0:34:56.360 --> 0:35:02.040 about before HC G human uh corean ganata tropin right, 0:35:02.280 --> 0:35:05.680 very nice. Um, After that, between eleven and thirteen weeks, 0:35:05.719 --> 0:35:08.719 you're gonna have an ultrasound that's gonna measure the back 0:35:08.880 --> 0:35:11.919 of the fetus's neck to see if there is any 0:35:12.280 --> 0:35:15.680 unusual fluid collecting there. And then a doctor will take 0:35:16.280 --> 0:35:20.080 the ultrasound that first test, and they will see the 0:35:20.120 --> 0:35:22.759 maternal age and then say, all right, this may be 0:35:23.040 --> 0:35:26.480 the likelihood of you having a baby with Down syndrome, right, 0:35:26.480 --> 0:35:30.560 And if it's really high, they'll say, we we recommend 0:35:30.640 --> 0:35:33.640 you do more invasive testing, because that's the thing. A 0:35:33.680 --> 0:35:35.759 blood tests, they're just taking blood from the mom and 0:35:36.160 --> 0:35:39.680 checking it out and um, it's not very invasive, but 0:35:39.719 --> 0:35:43.640 it's also not quite as accurate as a more invasive 0:35:43.640 --> 0:35:47.360 test like amniocentesis. Yeah, and also carries zero risk. The 0:35:47.360 --> 0:35:51.560 blood test yeah, UM, although it's risky if you don't 0:35:51.600 --> 0:35:55.200 like needles. Well, yeah, that's true. There's also another one 0:35:55.239 --> 0:36:00.680 called choreonic villas sampling or CVS and UM. One uses 0:36:00.680 --> 0:36:04.000 cells from the placenta. One takes a sample of amniotic fluid. 0:36:04.040 --> 0:36:07.960 The annual synesis does and UM. They're a little more 0:36:08.000 --> 0:36:10.759 invasive UM and because of that, there is a a 0:36:10.960 --> 0:36:16.040 slight chance that the mother will miscarry UM from the test. 0:36:16.120 --> 0:36:19.480 And they always blame the tests forever, but now I 0:36:19.520 --> 0:36:22.279 think they're starting to think that there's a chance that 0:36:22.360 --> 0:36:25.120 in at least some of the cases the miscarriage would 0:36:25.120 --> 0:36:27.480 have happened, regardless that it actually wasn't the test that 0:36:27.520 --> 0:36:30.120 triggered it. UM and I saw everything from one in 0:36:30.120 --> 0:36:33.719 a hundred pregnancies miscarry after the test all the way 0:36:33.760 --> 0:36:36.800 to one in nine hundred in Alberta, which is apparently 0:36:36.800 --> 0:36:39.120 where you want to get these tests carried out. The 0:36:39.280 --> 0:36:43.719 chances much much lower there, but they're they're accurate. That's 0:36:43.760 --> 0:36:47.040 why they perform these tests in the first place. That's right. 0:36:47.080 --> 0:36:48.800 And then there's a new test sort of the newest 0:36:48.800 --> 0:36:53.279 thing going. UH. It's UH non invasive. It's called in fact, 0:36:53.440 --> 0:36:57.799 noninvasive prenatal testing and IPT or screening n i p S, 0:36:58.200 --> 0:37:00.960 and that analyzes and this is really stuff. It analyzes 0:37:01.000 --> 0:37:05.239 fragments of DNA UH from the blood and some of 0:37:05.239 --> 0:37:08.160 that is going to come from the placenta, with the 0:37:08.280 --> 0:37:12.279 idea that placental cells or placenta cells d n A 0:37:12.640 --> 0:37:16.239 is usually identical to that of the fetus. So it's 0:37:16.239 --> 0:37:18.960 a really simple way to screen for these abnormalities really 0:37:19.000 --> 0:37:22.120 early on, like ten weeks in. It's been around since 0:37:22.120 --> 0:37:27.080 about twenty of has become much more popular, but UM 0:37:27.160 --> 0:37:29.440 it has still not been cleared by the f d A, 0:37:30.200 --> 0:37:33.399 and the f d A even this year said don't 0:37:33.520 --> 0:37:35.399 just get that test, Like, if you want to get 0:37:35.400 --> 0:37:38.640 that test, you can get that test, but UM, just 0:37:38.680 --> 0:37:41.640 don't look at those results alone, right. And the reason 0:37:41.680 --> 0:37:45.400 the FDA would say anything like that is because the 0:37:45.560 --> 0:37:48.919 point to these tests for the vast majority of people 0:37:48.960 --> 0:37:52.920 who get them are UM to determine whether they're going 0:37:52.960 --> 0:37:57.520 to keep this pregnancy or not. UM. There's a lot 0:37:57.600 --> 0:38:01.680 of concern among people who are UM part of the 0:38:01.760 --> 0:38:06.279 Down syndrome community that there's not a concerted effort to 0:38:07.200 --> 0:38:13.520 UM wipe out people with Down syndrome from the diversity 0:38:13.560 --> 0:38:20.120 of you know, human types. Um. But that a million 0:38:20.719 --> 0:38:25.359 different individual UM decisions, all going the same way, can 0:38:25.480 --> 0:38:29.320 ultimately have the same effect. It really depends on where 0:38:29.360 --> 0:38:32.839 you are in the world. Again, that so I think. 0:38:32.840 --> 0:38:34.680 I call her Sophia Zang. I'm sorry, her name is 0:38:34.680 --> 0:38:39.080 Sarah Zang. She wrote that article in The Atlantic. Um, yeah, 0:38:39.080 --> 0:38:41.799 it was really wonderful. She um. I guess if an 0:38:41.880 --> 0:38:46.080 article about UM accidentally eradicating Down syndrome people from Earth 0:38:46.520 --> 0:38:50.359 could be wonderful, it definitely is. But um she uh. 0:38:50.560 --> 0:38:53.399 She focused on Denmark, where there's something like I think 0:38:55.080 --> 0:38:58.560 of UM people who come back with a screening that says, yes, 0:38:58.600 --> 0:39:02.160 your baby is going to have Down Synemer has Down syndrome. Um, 0:39:02.200 --> 0:39:05.160 they abort, They choose to abort the pregnancy. And I 0:39:05.200 --> 0:39:08.360 think it's even higher in Iceland. I think it's approaching 0:39:08.360 --> 0:39:12.440 a dent in Iceland, and as a result, the number 0:39:12.520 --> 0:39:15.960 of people with Down syndrome being born there's plummeting in 0:39:16.239 --> 0:39:20.040 I think two thousand and eighteen, Sarah Zang said in Denmark, 0:39:20.560 --> 0:39:24.080 eighteen people were born in the whole country with Down syndrome. 0:39:24.760 --> 0:39:28.760 Only seven of them were purposefully born. The other eleven 0:39:28.800 --> 0:39:32.600 had gotten false negatives and had carried on with the 0:39:33.120 --> 0:39:35.200 with the pregnancy, and you presume that some of them 0:39:35.239 --> 0:39:40.120 probably would not have otherwise. I wonder, I don't know. 0:39:40.280 --> 0:39:42.440 I wonder what it is about that part of the world. 0:39:43.120 --> 0:39:45.000 I don't know, because if you read the article, she 0:39:45.080 --> 0:39:49.520 really goes on about how that that country in Scandinavia, 0:39:49.560 --> 0:39:52.040 I think in general, really kind of considers itself like 0:39:52.560 --> 0:39:57.520 very diverse, um, culturally and very inclusive and they're not 0:39:57.680 --> 0:40:02.239 like anti disabled, uh people or anything like that. But 0:40:02.360 --> 0:40:05.680 when it comes down to it, it's like, yeah, those 0:40:05.719 --> 0:40:10.839 individual decisions, very private decision. Um, can they add up 0:40:10.840 --> 0:40:13.400 to that in in private and public? It's different? In 0:40:13.440 --> 0:40:16.960 private it's a completely different different game apparently. Yeah. And 0:40:17.040 --> 0:40:20.000 you know, we should also mention that when you get 0:40:20.040 --> 0:40:23.520 these tests done and they come back, you have that 0:40:23.600 --> 0:40:26.000 choice to make. But a lot of times it's also 0:40:26.840 --> 0:40:30.440 like uh, preparing yourself, like, yeah, I'm gonna go through 0:40:30.440 --> 0:40:33.320 with this pregnancy, and I want to know what to expect. 0:40:33.400 --> 0:40:35.480 I want to prepare myself. I want to educate myself. 0:40:36.040 --> 0:40:39.400 I want to um, you know, there's there's money involved, 0:40:39.440 --> 0:40:41.120 which we're gonna talk about in a minute. So I 0:40:41.160 --> 0:40:44.400 want to get my finances UM squared away, or make 0:40:44.440 --> 0:40:48.400 sure I can have it squared away. I think the 0:40:48.600 --> 0:40:50.200 I guess we should talk a little bit about some 0:40:50.239 --> 0:40:54.040 of the statistics. UM. The abortion rate for Down syndrome 0:40:54.080 --> 0:40:59.719 positive pregnancies UH is declining, you know, for sure. UM. 0:40:59.760 --> 0:41:01.279 It's it's kind of tough in the US because they 0:41:01.320 --> 0:41:05.240 don't have great stats apparently, but the CDC said between 0:41:05.239 --> 0:41:08.239 seventy nine and two thousand three UH the number of 0:41:08.239 --> 0:41:12.200 babies borns with babies born with Down syndrome increased by 0:41:12.960 --> 0:41:18.120 over that time frame, and al analysis found that termination 0:41:18.200 --> 0:41:22.640 rates for fetuses with Down syndrome was between UH sixty 0:41:22.680 --> 0:41:26.560 seven and eight and was declining. Yes, and that's the 0:41:26.680 --> 0:41:29.000 US only. It doesn't appear to be declining in some 0:41:29.120 --> 0:41:31.960 of the Scandinavian countries for example. In other places in 0:41:32.040 --> 0:41:34.520 the world, I think Japan and China also have really 0:41:34.600 --> 0:41:38.279 high abortion rates for Down syndrome positive pregnancies. But the 0:41:38.400 --> 0:41:41.200 U s um there's a few factors at play for 0:41:41.320 --> 0:41:44.680 UM why they would be declining and the down syndrome 0:41:44.680 --> 0:41:47.480 population would be increasing. UM. I think the national Down 0:41:47.520 --> 0:41:52.120 syndrome society says about today about people with Down syndrome 0:41:52.120 --> 0:41:54.600 are born each year, and there are, like I said, 0:41:54.640 --> 0:41:58.120 a few reasons why it's increasing. One is just because 0:41:58.160 --> 0:42:02.520 they've been brought of institutions and people have been able 0:42:02.560 --> 0:42:04.960 to see like, oh, yeah, these are human beings. They're 0:42:05.000 --> 0:42:08.200 different from me, but there's still human beings and they're 0:42:08.239 --> 0:42:10.080 the same as me in a lot more ways than 0:42:10.120 --> 0:42:15.960 I realized. And also again anecdotally, they're amazing people to write. Absolutely, 0:42:16.360 --> 0:42:18.760 it's like, oh goodness, When I we just accept people 0:42:18.760 --> 0:42:22.400 as people, then everything gets better. Right. So that was 0:42:22.440 --> 0:42:25.759 that was just one factor. There's some others too. Uh yeah, 0:42:25.920 --> 0:42:29.480 one of them. Well, one factor is Hispanic women are 0:42:29.560 --> 0:42:32.440 much more likely to give birth regardless of whether or 0:42:32.440 --> 0:42:38.600 not they have down uh syndrome, positive pregnancy happening right. Uh. 0:42:38.640 --> 0:42:41.399 And then another factor that can be complicated is that 0:42:42.200 --> 0:42:46.080 these screenings used to be something that you specifically request. 0:42:46.640 --> 0:42:50.960 Now they're a little more standard, So that could just overall, 0:42:51.000 --> 0:42:52.920 you know, if you're just gonna have more screenings, that 0:42:52.960 --> 0:42:57.160 could increase the overall percentage of those positive results of 0:42:57.200 --> 0:43:01.040 people who still continue with that pregnancy and increase the 0:43:01.120 --> 0:43:04.120 total number of terminations, so I guess all the numbers 0:43:04.239 --> 0:43:07.399 would be rising. Right. Also, the fact that people are 0:43:07.400 --> 0:43:10.360 giving birth later on average is increasing the rate of 0:43:10.440 --> 0:43:14.320 Down syndrome pregnancies to begin with, and that that means 0:43:14.360 --> 0:43:18.520 that just by by definition, more Down syndrome people are 0:43:18.560 --> 0:43:21.440 being born. So I think the number one factor is 0:43:21.840 --> 0:43:24.080 um being able to take people with Down syndrome to 0:43:24.120 --> 0:43:28.920 the park now has just changed everything. Yeah, Um, I 0:43:29.000 --> 0:43:31.799 mentioned money, and there is you know, if there are 0:43:31.800 --> 0:43:35.560 more medical complications on average, Uh, then there are going 0:43:35.600 --> 0:43:38.640 to be more medical costs on average, and that is 0:43:39.000 --> 0:43:42.439 definitely something that people need to think about. I think 0:43:42.520 --> 0:43:46.240 among there's one study among children between birth and age 0:43:46.320 --> 0:43:50.440 four that at private insurance, the average medical care costs 0:43:50.480 --> 0:43:54.239 were about twelve times higher if you had Down syndrome. 0:43:55.040 --> 0:43:59.880 And I think about families with a child with Down syndrome. 0:44:00.640 --> 0:44:03.200 Um had a family member that stopped their job, that 0:44:03.280 --> 0:44:07.239 stopped working to care for them full time, and about 0:44:07.640 --> 0:44:11.640 also said it caused the financial strain on their family, right, Um, 0:44:11.680 --> 0:44:14.640 And I mean there's plenty of other challenges as well. Um. 0:44:14.719 --> 0:44:17.080 One of the things about people with Down syndrome is 0:44:17.120 --> 0:44:20.400 that they age faster. Their bodies just age more quickly 0:44:20.680 --> 0:44:24.440 than people without Down syndrome. UM statistic I saw is 0:44:24.480 --> 0:44:27.960 that a person aged forty with Down syndrome, UH, their 0:44:28.000 --> 0:44:32.320 bodies probably about five years older than their peers um 0:44:32.360 --> 0:44:35.520 and in the general population. And then at sixty, their 0:44:35.560 --> 0:44:39.600 bodies about twenty years older than the average sixty year 0:44:39.600 --> 0:44:42.520 old in the general population. UM. And then one of 0:44:42.560 --> 0:44:45.360 the things that I think really kind of looms like 0:44:45.400 --> 0:44:48.600 a dark cloud over the Down syndrome community is that 0:44:48.640 --> 0:44:52.920 there's a really good chance that they will develop Alzheimer's, 0:44:52.960 --> 0:44:56.040 probably better than a fifty percent chance. I saw an 0:44:56.120 --> 0:44:59.120 editorial in the Washington Post that said a ninety percent 0:44:59.280 --> 0:45:02.000 chance either way. It's a really good likelihood that they're 0:45:02.000 --> 0:45:04.480 going to develop Alzheimer's. It's a big problem in the 0:45:04.520 --> 0:45:07.560 Down syndrome community. Yeah, you sent me that stuff, but 0:45:07.600 --> 0:45:10.600 I didn't get a chance to look over the reasons why. 0:45:10.640 --> 0:45:14.239 But they they've kind of think they've isolated why right, Yeah, 0:45:14.320 --> 0:45:17.440 So that that twenty one chromosome, right, um, that you 0:45:17.520 --> 0:45:20.880 they often have three copies of that third copy actually 0:45:20.920 --> 0:45:25.200 boost production of what's called amloid beta, and amloid beta 0:45:25.360 --> 0:45:27.440 is one of the things that's responsible for the creation 0:45:27.520 --> 0:45:31.160 of plaques on the brain that leads to Alzheimer's. So 0:45:31.360 --> 0:45:35.600 is another um substance called TAO, and people with Down 0:45:35.600 --> 0:45:38.760 syndrome produce more of this stuff, so their brains age faster, 0:45:38.840 --> 0:45:42.080 so they develop Alzheimer's at a much younger age, and 0:45:42.160 --> 0:45:45.839 they're they're much more likely too, because they're overproducing these 0:45:45.840 --> 0:45:49.759 proteins that create the plaque um and then also in UM. 0:45:50.200 --> 0:45:54.960 The Down syndrome population, Alzheimer's starts to present differently. It's 0:45:55.000 --> 0:45:58.080 not really memory loss or for forgetfulness that's like an 0:45:58.080 --> 0:46:01.000 early signed. It's more and this is very said, reduced 0:46:01.040 --> 0:46:05.480 interest in being sociable, conversing or expressing thoughts, and decreased 0:46:05.560 --> 0:46:10.479 enthusiasm for usual activities. So there's a lot of people 0:46:10.480 --> 0:46:12.560 who are like, Okay, well, we're starting to work on 0:46:12.600 --> 0:46:16.719 Alzheimer's and testing new drugs, obviously we're going to include 0:46:16.840 --> 0:46:20.080 people with Down syndrome in those tests. And that is 0:46:20.120 --> 0:46:22.279 absolutely not true. As a matter of fact, there was 0:46:22.280 --> 0:46:27.640 a test that the FDA explicitly excluded people with Down 0:46:27.680 --> 0:46:31.239 syndrome from for testing in Alzheimer's drug yes, and so 0:46:31.320 --> 0:46:34.080 there's there's a real movement to like start to include 0:46:34.160 --> 0:46:36.520 people with Down syndrome in these clinical trials, and it 0:46:36.560 --> 0:46:39.480 seems to be starting to to gain some traction. But 0:46:39.560 --> 0:46:44.840 it's just completely insensible to to just exclude the group 0:46:45.200 --> 0:46:49.359 that I guess, on average has the highest likelihood of 0:46:49.400 --> 0:46:55.520 developing Alzheimer's of any other human group around. Yeah. So 0:46:56.440 --> 0:46:59.440 it's funny. When I was reading this stuff that Livia 0:46:59.480 --> 0:47:03.200 sent us, was getting um a little frustrated with like 0:47:03.680 --> 0:47:06.000 this study says this, and you know, we talked to 0:47:06.040 --> 0:47:09.319 parents that said this, and I was like, well, you know, 0:47:09.920 --> 0:47:13.400 has someone talked to people with Down syndrome and about 0:47:13.760 --> 0:47:16.960 how they feel? And good news is Livia held it 0:47:17.000 --> 0:47:20.040 till the end, and they've done just that uh many times. 0:47:20.080 --> 0:47:22.520 In fact, that was she found one study in two 0:47:22.560 --> 0:47:25.560 thousand eleven, and this is of kids twelve and older 0:47:25.600 --> 0:47:29.680 with Down syndrome, and of them said they were happy 0:47:29.840 --> 0:47:33.439 with their lives. Uh. Seven percent said they liked who 0:47:33.440 --> 0:47:38.200 they were, uh, said they like how they look, said 0:47:38.239 --> 0:47:41.160 they love their family, and eight six percent said they 0:47:41.160 --> 0:47:44.759 could make friends easily. And then they asked it some 0:47:44.840 --> 0:47:47.080 sort of open didded questions just to get like, you know, 0:47:47.239 --> 0:47:51.520 real world answers, and uh, you know, most of these 0:47:51.600 --> 0:47:56.120 kids did express some frustrations with their condition. Um, but 0:47:56.200 --> 0:47:59.800 it was parts of their condition and not their lives 0:48:00.000 --> 0:48:03.319 and not like this is my life is just so 0:48:03.400 --> 0:48:05.799 frustrating as is like this one part of my life 0:48:05.840 --> 0:48:09.319 is frustrating. And obviously a lot of this stuff in 0:48:10.360 --> 0:48:13.120 high school and like in puberty, they found that, you know, 0:48:13.160 --> 0:48:16.000 there were more reports of kids being sad who had 0:48:16.000 --> 0:48:19.560 Down syndrome and not adjusting as well. And you know 0:48:19.640 --> 0:48:22.719 that's that's called puberty and being in high school and 0:48:22.719 --> 0:48:25.560 it's uh, probably especially rough if you have Down syndrome, 0:48:25.600 --> 0:48:28.000 but those are the changes that are going on with 0:48:28.040 --> 0:48:30.759 every kid, and so it may be a little more 0:48:30.800 --> 0:48:34.000 pronounced at that age. Yeah. And this, um, this is 0:48:34.000 --> 0:48:37.080 a really good study to skim. It's called Self Perceptions 0:48:37.120 --> 0:48:40.120 from People with Down Syndrome. It was led by Brian Skoto, 0:48:40.320 --> 0:48:43.120 was from two thousand eleven. It's available for free online 0:48:43.520 --> 0:48:46.000 and it has just it's just chock full of quotes 0:48:46.280 --> 0:48:49.200 from the study. And he even says that they conducted 0:48:49.200 --> 0:48:51.920 the study because so many people are being presented with 0:48:52.040 --> 0:48:55.640 all of the downsides of Down syndrome when they're told 0:48:55.680 --> 0:48:58.279 that their child has Down syndrome, and do they want 0:48:58.320 --> 0:49:00.759 to keep the pregnancy, and he's like, we need to 0:49:00.800 --> 0:49:03.399 get other data that shows the full picture out there 0:49:03.440 --> 0:49:06.200 to people too. That's why he conducted this. But it's 0:49:06.200 --> 0:49:08.400 a really great study to read. And one of the 0:49:08.400 --> 0:49:11.680 things that it kind of points out without overtly pointing out, 0:49:12.000 --> 0:49:15.560 is that people at Down syndrome generally are aware that 0:49:15.640 --> 0:49:19.160 they have Down syndrome, that they're different in some way, 0:49:19.680 --> 0:49:23.560 and yet despite that, this study shows that they're way 0:49:23.640 --> 0:49:27.920 happier on on this self first self reported study granted 0:49:28.239 --> 0:49:32.120 than the average person UM twelve and older in the 0:49:32.160 --> 0:49:36.000 general population. Yeah, it's it's a really and you know, 0:49:36.120 --> 0:49:37.520 I hate that we saved this stuff to the end, 0:49:37.560 --> 0:49:39.480 but it's kind of a nice way to leave things. 0:49:39.560 --> 0:49:41.800 I think for sure. I want to shout out to 0:49:41.920 --> 0:49:47.600 other amazing well three other amazing people, um well four, five, five, 0:49:47.800 --> 0:49:52.080 But in three groups you're always in there. Um. One 0:49:52.160 --> 0:49:57.120 is Paul and Chris Sharoon Deforge. I believe when Paul 0:49:57.320 --> 0:50:00.800 died they both had Down syndrome. They both they have 0:50:00.920 --> 0:50:06.640 been married for twenty five years. Pretty amazing. Um. There 0:50:06.760 --> 0:50:09.560 was a woman named Lisa White who was fifty back 0:50:09.600 --> 0:50:12.640 in two thousand sixteen. She had Down syndrome. It still 0:50:12.680 --> 0:50:14.880 doesn't believe she's around. But one of the things that 0:50:14.960 --> 0:50:17.240 was so amazing about two thousand six teams that Lisa 0:50:17.360 --> 0:50:21.080 turned fifty and her son Nick, her son Nick, who 0:50:21.120 --> 0:50:25.319 also has Down syndrome, turned twenty. That is really rare 0:50:25.320 --> 0:50:27.800 in the community. But it also shows like this woman 0:50:27.840 --> 0:50:30.400 has Down syndrome and she raised a child and she 0:50:30.480 --> 0:50:34.279 was living independently. Also, yeah, uh, we can also shout 0:50:34.280 --> 0:50:38.279 out people like Sujiete de Sai, who was the first 0:50:38.360 --> 0:50:42.600 musician with Down syndrome to play at Carnegie Hall, has 0:50:42.640 --> 0:50:45.799 played in all fifty states thirteen countries. Uh, if you 0:50:45.800 --> 0:50:48.319 saw the great movie the Peanut Butter Falcon, really good 0:50:48.360 --> 0:50:50.879 movie is that I haven't seen. Yeah, it's really good. 0:50:50.920 --> 0:50:55.000 Has Shyla buff in it. But zach Um gotts again. 0:50:55.080 --> 0:50:57.360 I think his house pronounces the actor. He's been in 0:50:57.800 --> 0:51:00.200 a bunch of stuff. But Peanut Butter fact and was 0:51:00.239 --> 0:51:03.319 certainly the highest profile movie and it's a really, really good, 0:51:03.600 --> 0:51:06.239 good flick. Okay, I'm gonna check it out. I mean, 0:51:06.280 --> 0:51:10.000 there's special Olympians who are on the national team, UM 0:51:10.160 --> 0:51:14.800 runaway models. Um arguably the famous person, the most famous 0:51:14.840 --> 0:51:17.120 person with Down syndrome, Chris Burke who played Quirky on 0:51:17.160 --> 0:51:20.040 Life goes On. Gotta shout out Chris Burke for sure. 0:51:20.880 --> 0:51:23.759 Chris Burke, who played Quirky. Life Goes On was a 0:51:23.920 --> 0:51:26.719 very big show and a big deal as far as 0:51:26.960 --> 0:51:29.560 raising awareness, Like it seems like it just a sort 0:51:29.600 --> 0:51:32.080 of a trite thing to shout out the guy who 0:51:32.120 --> 0:51:35.840 played Quirky, but that show was. It was a game changer, 0:51:35.920 --> 0:51:38.960 and not only with just Down syndrome, but just awareness 0:51:38.960 --> 0:51:42.359 in how people viewed a lot of different kinds of disabilities. 0:51:42.360 --> 0:51:46.880 So he's worked with the National Down Syndrome Society h 0:51:47.000 --> 0:51:49.160 for a long time and it's just a great ambassador 0:51:49.200 --> 0:51:51.520 for that group and speaking you gotta shout out. I 0:51:51.560 --> 0:51:55.640 also want to shout out Kayala McKeon, who manages grassroots 0:51:55.640 --> 0:51:59.160 advocacy for the National Down Syndrome Society. She also has 0:51:59.200 --> 0:52:02.480 Down syndrome herself. She was also the first registered lobbyists 0:52:02.520 --> 0:52:05.680 in America with Down syndrome. And we met her Chuck, 0:52:05.719 --> 0:52:09.359 because she came to our Atlanta show, Um where um, 0:52:09.600 --> 0:52:12.680 we had the National Down Syndrome Society come and then um, 0:52:12.760 --> 0:52:16.680 what was the name of the animal charity that you supported? Oh? 0:52:16.760 --> 0:52:21.000 The local one? Yeah, Uh lifeline, Lifeline. That's right, That's 0:52:21.000 --> 0:52:23.920 what I was gonna say. So, UM, Kayla as a 0:52:24.000 --> 0:52:25.640 very cool person who is still at it from what 0:52:25.719 --> 0:52:28.080 I can tell, So shout out Kayla and everybody at 0:52:28.080 --> 0:52:31.960 the n d SS. Awesome. And then we have one 0:52:31.960 --> 0:52:33.920 more thing we just have to cover too. We can't 0:52:33.920 --> 0:52:37.520 not mention it. That article from UM I think New 0:52:37.600 --> 0:52:41.239 Scientists that there's a study that was carried out and 0:52:41.280 --> 0:52:44.240 it was just among seven adult men with Down syndrome 0:52:44.480 --> 0:52:48.759 over six months, but they gave them uh pulses of 0:52:49.560 --> 0:52:53.399 geneta trope and releasing hormone g n r H and 0:52:53.760 --> 0:53:00.440 it improved their cognitive function over six months. That's like 0:53:00.480 --> 0:53:03.800 going from a thousand to add on the old school 0:53:03.880 --> 0:53:08.480 s a t that actually tested cognitive ability. Yeah. Yeah, 0:53:08.560 --> 0:53:11.000 when you put in that perspective, it's nuts giving them 0:53:11.160 --> 0:53:14.720 one hormone. And again that's what actually increases and gets 0:53:14.719 --> 0:53:19.120 triggered when puberty hits, which also coincides with the decline 0:53:19.120 --> 0:53:22.040 and cognitive ability among Down syndrome people. So they may 0:53:22.080 --> 0:53:24.560 have figured out something really big, not just for Down 0:53:24.560 --> 0:53:27.959 syndrome people, but for Alzheimer's as well. We gotta shout 0:53:27.960 --> 0:53:30.520 out one more thing Okay, now where were running long? 0:53:31.160 --> 0:53:34.560 But our very own Jerry sent this to us. Uh. 0:53:34.840 --> 0:53:37.719 Although it's called Jerry's Habima Theater h A B I 0:53:37.880 --> 0:53:41.840 m A uh, it is not our Jerry's Theater, just 0:53:41.960 --> 0:53:44.880 strictly coincidence. And I didn't know about this. This is 0:53:44.920 --> 0:53:48.120 in Atlanta. It's on tilly Mill Road, and it is 0:53:48.160 --> 0:53:54.160 a professional, uh theater company of actors and they all 0:53:54.200 --> 0:53:59.319 have special needs. And apparently there is a show that 0:53:59.400 --> 0:54:02.520 goes on I think it's this in March every year. 0:54:02.520 --> 0:54:06.359 It's coming up March nine through to save the date 0:54:06.400 --> 0:54:10.160 for Cinderella, and tickets go on sale in January. And 0:54:10.200 --> 0:54:14.879 this is an all inclusive theater company that puts on 0:54:15.520 --> 0:54:18.840 these plays and it's looks like a wonderful thing. I 0:54:18.840 --> 0:54:21.279 think Jerry said that she had been and it's like 0:54:21.360 --> 0:54:25.080 one of the most fun best things uh and as 0:54:25.080 --> 0:54:27.080 well as being supportive, but just a really fun thing 0:54:27.120 --> 0:54:32.720 to do. So go check out Jerry's Habima Theater. Okay, 0:54:34.080 --> 0:54:36.160 I'm out of stuff for now. I got I mean, 0:54:36.200 --> 0:54:37.840 we could plug people all day, but I'm out of 0:54:37.840 --> 0:54:40.840 stuff too. Okay, if you want to know more about 0:54:40.840 --> 0:54:43.560 down syndrome, that's really something that you should go out 0:54:43.600 --> 0:54:45.920 and learn more about and while you're doing that, in 0:54:45.960 --> 0:54:50.919 the meantime, I say it's time for listener mail. I'm 0:54:51.040 --> 0:54:55.200 going to call this UH pretty quick follow up from Fundamentalism. 0:54:55.200 --> 0:54:58.160 It was released today and as it happens, we start 0:54:58.160 --> 0:55:01.879 getting emails minutes after release, usually about forty five minutes after, 0:55:02.640 --> 0:55:05.400 although sometimes people jump the gun and email us during 0:55:05.400 --> 0:55:09.600 an episode. Hey guys, thanks for the recent episode on fundamentalism. 0:55:09.640 --> 0:55:11.919 You put into words exactly what I've been going through 0:55:12.400 --> 0:55:14.600 for the past couple of years. I come from a 0:55:14.680 --> 0:55:17.680 very fundamentalist Catholic family and have been dealing with all 0:55:17.680 --> 0:55:21.359 the joy that comes from expressing a different viewpoint. My 0:55:21.360 --> 0:55:23.000 wife and I are both atheists, and this has been 0:55:23.000 --> 0:55:25.600 a point of contention with my family never since we 0:55:25.640 --> 0:55:28.239 have decided to have a non religious wedding. UH. The 0:55:28.280 --> 0:55:30.399 tension is only increased since we have welcomed our daughter 0:55:30.400 --> 0:55:32.880 into the world and had to deal with my family's 0:55:32.880 --> 0:55:36.759 push to baptizer. The episode on fundamentalism is some very 0:55:36.800 --> 0:55:39.120 good points and definitely allowed me to look at the 0:55:39.160 --> 0:55:43.759 situation in a different light. The issue is closed mindedness 0:55:44.320 --> 0:55:48.200 and not necessarily religion. Appreciate all you guys do all 0:55:48.200 --> 0:55:52.040 the best that is from Jake. Awesome, thank you for that. 0:55:52.560 --> 0:55:55.520 I can imagine that their wedding someone said God bless 0:55:55.520 --> 0:55:59.440 you two, and they were like, get out. You know, 0:55:59.440 --> 0:56:00.880 I'll take a guy bless you. I don't mind it. 0:56:01.600 --> 0:56:05.160 Uh when you sneeze her anytime. Anytime, if someone uh, 0:56:05.760 --> 0:56:08.120 I don't know, if my grocery store check her outer 0:56:08.320 --> 0:56:11.279 just says God bless you have a blessed day, I 0:56:11.440 --> 0:56:13.759 just say, you know what, thanks very much, because that's 0:56:13.960 --> 0:56:16.600 that's a kindness that they're bestowing upon me in their 0:56:16.640 --> 0:56:19.799 own way. Oh yeah, I'm like, you've never heard of 0:56:19.840 --> 0:56:26.080 separation of church in public. You're fired as you're smashing 0:56:26.120 --> 0:56:30.280 a sheet cake into your mouth. That's exactly right, because 0:56:30.320 --> 0:56:33.240 those things don't make it out the door. Well, thanks 0:56:33.239 --> 0:56:36.640 a lot for sending us that email, Jake, And if 0:56:36.680 --> 0:56:40.279 you want to be like Jake, then you can send 0:56:40.320 --> 0:56:43.440 us an email to uh stuff podcast at iHeart radio 0:56:43.680 --> 0:56:49.000 dot com. Stuff you Should Know is a production of 0:56:49.040 --> 0:56:52.360 I Heart Radio. For more podcasts my heart Radio, visit 0:56:52.400 --> 0:56:55.200 the i heart Radio app, Apple Podcasts, or wherever you 0:56:55.239 --> 0:56:56.560 listen to your favorite shows.