Speaker 1: Welcome to Stuff you Should Know, a production of I
Speaker 1: Heart Radio. Hey, and welcome to the podcast. I'm Josh,
Speaker 1: and there's Chuck and Jerry's here too, and this is
Speaker 1: a good old fashioned stuff you should know and it's serendipitous. Chuck,
Speaker 1: do you wanna know why? I know why? Oh you
Speaker 1: do here? Well, I think you're probably gonna say that
Speaker 1: we're recording this during Down Syndrome Month. That is correct, sir,
Speaker 1: although it will be released uh in November probably, Yeah,
Speaker 1: but still we're recording in down Syndrome Awareness Month. And
Speaker 1: I had no idea that October was down Syndrome Awared,
Speaker 1: So I think it's pretty cool that it worked out.
Speaker 1: Anytime it works out like that. That's right. We're we're
Speaker 1: recording way ahead of time. We're trying to bulk up
Speaker 1: for our Christmas holiday break that we like to take.
Speaker 1: That's right. I voted today early voting. If that shows
Speaker 1: you when this is congrats Chuck. And it felt good
Speaker 1: to just get or done, get it out of the way.
Speaker 1: And it feels good to do this episode because down
Speaker 1: syndrome is a condition that is really really really changed. Yeah,
Speaker 1: a lot like in our lifetime, like since since the
Speaker 1: nineteen seventies. Uh, and how it's how it's viewed, how
Speaker 1: it's accepted, and actual health outcomes, and a lot of
Speaker 1: those health outcomes actually have something to do with how
Speaker 1: it's been viewed and accepted, which is remarkable and sad,
Speaker 1: you know, if you're speaking historically. Yeah, yeah, for sure.
Speaker 1: But I mean that's just the headway that's been made
Speaker 1: things to in large part the disability rights movement. Yeah,
Speaker 1: people with Down syndrome have really benefited from that, and
Speaker 1: I'm happy it can be about that too, that's right. Um,
Speaker 1: we should say from the outset, we're talking about a
Speaker 1: group of human beings who, like any group of human beings,
Speaker 1: are um, incredibly varied in talent, skills, hopes, dreams, um,
Speaker 1: medical problems, facial features, all that stuff. So to say,
Speaker 1: like you know, down syndrome people all look a certain
Speaker 1: way or they're all happy all the time, is it's
Speaker 1: stereotypical and incorrect at the very least, you know. Um,
Speaker 1: So we just want to preface all of this that
Speaker 1: we're talking in in total generalities here about Down syndrome
Speaker 1: people in general. Just keep in mind this is not
Speaker 1: some pet group, like any group of humans is not
Speaker 1: some pat group, that's right. Although I will say every
Speaker 1: kid that I've ever met who had Down syndrome, which
Speaker 1: has been a handful, have been some of the most wonderful, loving,
Speaker 1: sweetest kids I've ever met in my life, every single one.
Speaker 1: And I met some other kids who are just jerks. Yeah,
Speaker 1: for sure, for sure, And again it's a it's a stereotype.
Speaker 1: It seems to be rooted in a lot of anecdotal evidence.
Speaker 1: But just just keep in mind, like the people with
Speaker 1: Down syndrome have rich inner lives, and they're happy, sometimes
Speaker 1: they're sad, sometimes they're angry, sometimes they're frustrated, sometimes they're
Speaker 1: glad sometimes Like again, they're human beings, so just don't
Speaker 1: forget that. UM. So again we caveated that by saying
Speaker 1: we're talking in general, and this doesn't apply to all
Speaker 1: people with Down syndrome, but there are some facial characteristics
Speaker 1: that the majority of people with Down syndrome typically have
Speaker 1: that um make them readily recognizable. I think, yeah, for sure.
Speaker 1: And we should preface this also by saying that at
Speaker 1: this point it's about I've seen between one and every
Speaker 1: seven and eight hundred babies born in the United States
Speaker 1: have down syndrome. So it's kind of somewhere in that range.
Speaker 1: And if we're talking typical physical characteristics, almond shaped eyes
Speaker 1: that typically slant upward. Um. Sometimes the net can be shorter, uh,
Speaker 1: the ears can be smaller um sometimes and some of
Speaker 1: these didn't even know. There can be tiny white spots
Speaker 1: in the irises of the eyes. Um. Hands and feet
Speaker 1: maybe a little smaller. And another interesting one increase a
Speaker 1: cross the palm of the hand. Did you ever heard
Speaker 1: of that? I had not? Uh. And then small pinky
Speaker 1: fingers that sometimes can curb towards the thumb uh and
Speaker 1: are generally a little shorter than average. Yeah. They also
Speaker 1: typically have UM less than average muscle tone, and loose
Speaker 1: joints frequently UM. And one of the things that I
Speaker 1: did not realize before but I do now after doing
Speaker 1: this research is that a lot of the stuff that
Speaker 1: I think people chalk up to cognitive impairment among down
Speaker 1: syndrome people are actually the result of UM motor impairment.
Speaker 1: They're actually like, like a really good example is speech.
Speaker 1: They tend to UM become verbal later than non down
Speaker 1: syndrome kids. UM, but it's not because they don't know
Speaker 1: how to talk. It's because their mouth muscles haven't developed
Speaker 1: enough to actually talk, and that can actually lead to
Speaker 1: a tremendous amount of frustration because you're a kid who
Speaker 1: is unable to express himself for herself, and you would think, like,
Speaker 1: you know this, this kid with Down syndrome can't talk
Speaker 1: yet because of cognitive inabilities, and that's just not the case.
Speaker 1: It's not the case. Um. There are also medical issues
Speaker 1: that are typically arise when you have Down syndrome, and
Speaker 1: this is just something that you know that parents need
Speaker 1: to know if if you have a baby with Down syndrome,
Speaker 1: you're gonna get a lot of information thrust upon you.
Speaker 1: And there's a lot of information medically out there. Um.
Speaker 1: One of the big ones is a congenital heart defect,
Speaker 1: which is about half the people with Down syndrome end
Speaker 1: up having this. About half might have some hearing and
Speaker 1: vision problems, um, which can range. You know, the vision
Speaker 1: can be anything from cataracts to just regular role near
Speaker 1: sighted and far sidedness to um uh strabismus which uh,
Speaker 1: that is something I've heard of before. That's when the
Speaker 1: eyes don't track together. Yeah. A lot of people used
Speaker 1: to call it being cross eyed. Yeah, exactly, um. And
Speaker 1: then I think later in like the puberty years, they
Speaker 1: found that sometimes they can lose their sense of smell.
Speaker 1: Is that right, Yes, which is fascinating, And we'll talk
Speaker 1: a lot of a little more about that later on
Speaker 1: because they may have found a way to treat that incidentally. Um,
Speaker 1: but yeah, there seems to be like a decline in
Speaker 1: ability to smell and in cognitive abilities around puberty. Okay. Uh.
Speaker 1: Thyroid problems can happen, um, usually hyperthyroidism, UH, tummy issues, UH,
Speaker 1: sleep apnea or asthma, like some kind of general breathing issues,
Speaker 1: childhood leukemia, and then another thing that we'll talk about
Speaker 1: a little bit more. Um. And it's very sad, but
Speaker 1: Alzheimer's disease can come pretty early sometimes, right. So what
Speaker 1: we just did, Chuck, Um, from what I understand is
Speaker 1: what a doctor will basically tell a parent when they
Speaker 1: find out that their child, or their fetus or their
Speaker 1: child in the womb, however you want to put it,
Speaker 1: Um almost certainly has Down syndrome. And I saw a
Speaker 1: Down syndrome rights activist who was like, yeah, I think
Speaker 1: if you gave an expecting parent a list of all
Speaker 1: the possible medical problems any person could have like no
Speaker 1: one would have a kid. So just bear in mind that,
Speaker 1: like there's actually more it can be. It can be
Speaker 1: more pronounced than this, it can be less pronounced than this.
Speaker 1: This is just kind of the Down syndrome population just
Speaker 1: tends to have these problems more than the general population.
Speaker 1: That's a good way to put it. Uh, And we'll
Speaker 1: talk about this a little bit more too. But your
Speaker 1: chances of having a baby with Down syndrome increases as
Speaker 1: you get older. So if you're twenty five years old,
Speaker 1: the chances about one in one thousand, two hundred and fifty,
Speaker 1: and then if you're forty plus that goes to about
Speaker 1: one and a hundred UM. But we said, now it
Speaker 1: shakes out to, you know, an average of about one
Speaker 1: and seven to eight hundred when you take the full
Speaker 1: you know, birthen age range, right exactly. I also saw
Speaker 1: that somebody who has already had a baby with Down
Speaker 1: syndrome is more likely to have another baby with Down syndrome.
Speaker 1: UM and you said something about the syndrome being tied
Speaker 1: to the mom's age. I saw something like nineties something
Speaker 1: percent of Down syndrome cases are the result of UM.
Speaker 1: The donation of an extra chromosome by the mom. And
Speaker 1: I didn't understand that UM until I saw it explained
Speaker 1: by UM an author from an Atlantic article It's really good.
Speaker 1: Her name is Sophia Zang, and she explained that UM.
Speaker 1: I didn't realize this either. UM. When a woman's eggs developed,
Speaker 1: they actually developed while she's a fetus, before she's even born.
Speaker 1: Her eggs are are set and they contain one set
Speaker 1: of twenty three chromosomes. You put that together with the
Speaker 1: twenty three chromosomes carried by a male sperm when they fertilize,
Speaker 1: you get a full forty six chromosomes. But over time,
Speaker 1: as the woman ages, the proteins that hold those chromosomes
Speaker 1: in place and lock them in where they should be UM,
Speaker 1: that can degrade, and so they can kind of move
Speaker 1: around or do different things, or get copied additionally accidentally.
Speaker 1: And that is the basis of Down syndrome. It's also
Speaker 1: called trizoni one, which means that there is a third
Speaker 1: copy of UM chromosome one. That is that's Down syndrome.
Speaker 1: That's what causes Down syndrome. It's the one thing all
Speaker 1: people with Down syndrome have in common. Almost all people
Speaker 1: I should say not. It doesn't even capture the full
Speaker 1: population of down syndrome if you think about it. Yeah,
Speaker 1: and like you said, the UM, I think in nine
Speaker 1: of the cases when you were born with that extra
Speaker 1: number twenty one chromosome, it is inherited from the mother. Uh.
Speaker 1: And that is it looks like usually as a result
Speaker 1: of the degradation of that protein that's holding everything together.
Speaker 1: So it's really I never knew that. It's uh, it's
Speaker 1: pretty amazing that we know so specifically how this stuff
Speaker 1: works now. I think it was Chromosome twenty one was
Speaker 1: the second human chromosome that was fully sequenced as part
Speaker 1: of the Human Genome Project, and it's that extra chromosome.
Speaker 1: Is that number twenty one that's uh, that causes all
Speaker 1: of it. Yeah, I saw that. It's one of the
Speaker 1: smallest chromosomes, if not the smallest chromosome, but it's responsible
Speaker 1: for UM encoding anywhere from I saw two hundred to
Speaker 1: four hundred different genes, and some of those genes expressed
Speaker 1: different proteins UM that can be used in more than
Speaker 1: one reaction. There's one called nuclear hormone receptor interacting protein.
Speaker 1: Awesome name probably not a band name though I don't
Speaker 1: think so too much. It's involved in twenty different functions
Speaker 1: in the human body, just that one protein that's expressed
Speaker 1: by that by one of those two D four hundred
Speaker 1: genes on chromosome. So when you put all that together
Speaker 1: and you realize how many proteins are involved in how
Speaker 1: many different functions, that's how you get kind of this
Speaker 1: galaxy of symptoms that make up Down syndrome essentially. Yeah,
Speaker 1: and you mentioned that the trisomy twenty one doesn't even
Speaker 1: cover the full range of Down syndrome. That is because
Speaker 1: that's about the other five percent come from two other
Speaker 1: ways that you can have Down syndrome. One is translocation down,
Speaker 1: and that is when there is either a piece or
Speaker 1: a part or either a whole extra copy of number
Speaker 1: twenty one that's out there, but instead of being distinct
Speaker 1: and separate, it's attached or translocated to a different chromosome.
Speaker 1: And that's the accounts for three percent. And then uh,
Speaker 1: and this is I know a kid, a friend of
Speaker 1: our family who has mosaic down. That's the third type
Speaker 1: and that is accounts for the other two percent. And
Speaker 1: that is when um, some of the cells in your
Speaker 1: body do have the three copies of the chromosome twenty one,
Speaker 1: but others have the two, which is what you usually have.
Speaker 1: So it's sort of a mix and they're all kind
Speaker 1: of similar. But if you do have mosaic down, then
Speaker 1: you tend to generally have fewer of the typical features
Speaker 1: that you think of when you think of Down syndrome. Yeah,
Speaker 1: they represented by a percentage of cells in your body
Speaker 1: that have the third chromosome, and that that percentage reflects
Speaker 1: that UM. Also that mosaic um down syndrome occurs after
Speaker 1: the egg is fertilized, so it occurs during fetal development,
Speaker 1: like a cell divides um differently, and that that third
Speaker 1: chromosome is generated in some of the cells. That's why
Speaker 1: some of the cells go on to divide. They didn't
Speaker 1: have that that um that different division. They had regular
Speaker 1: too chromosome or two pair chromosome division. Right. So UM,
Speaker 1: that explains one of the mysteries I think behind Down syndrome,
Speaker 1: which is how, um, you could have identical twins and
Speaker 1: just one of them has Down syndrome and the other
Speaker 1: one doesn't. Oh yeah, did you just figure that out?
Speaker 1: Like is this breaking news from you? Oh? I see, Uh,
Speaker 1: maybe maybe it's my it's my little contribution to the field.
Speaker 1: All right. I think that's a good sort of general overview.
Speaker 1: Maybe we should take a break and we'll talk a
Speaker 1: little bit about I'm just gonna go and say it,
Speaker 1: the shameful history of how humans dealt with people with
Speaker 1: Down syndrome. Sorry, geh. So, if you're talking human history,
Speaker 1: there has always been it seems like Down syndrome. Um,
Speaker 1: you you dug up this was that like a clay
Speaker 1: sculpture or something. I didn't dig it up, I think
Speaker 1: in archaeol just did. But yes, I found it on
Speaker 1: the internet. That counts. Friend, dug it up on the internet.
Speaker 1: That was from five d CE. That it very much
Speaker 1: seems to be someone with Down syndrome. Uh. There are
Speaker 1: also been other various works of art. There's a very
Speaker 1: famous Flemish painting called the Adoration of the Christ Child
Speaker 1: from fifteen fifteen, where there's an angel, quite a few angels,
Speaker 1: but one of them seems to have the physical characteristics
Speaker 1: that we associate with down. So it has been there
Speaker 1: for a long time, but very sadly if you were,
Speaker 1: I mean, it wasn't even that long ago. Certainly if
Speaker 1: you were, you know, really far back history, your chances
Speaker 1: of living with Down was uh, pretty low. Um for
Speaker 1: you know, living any any kind of life. If you
Speaker 1: lived at all, it's a very short lifespan back in
Speaker 1: those days, and then if you did manage to live,
Speaker 1: you were probably sort of cast out of society and institutionalized.
Speaker 1: And this kind of stuff was going on up until
Speaker 1: like the late sixties and early seventies. Yeah, I think
Speaker 1: in nineteen sixty in the United States, if you had
Speaker 1: Down syndrome, your life expectancy was ten years old. And
Speaker 1: again any time you hear like, oh well, the people
Speaker 1: in olden days just lived to be thirty five. Now,
Speaker 1: so many children died at birth that its skewed the
Speaker 1: average life expectancy that far downward. And that's understandable, especially
Speaker 1: you know in pre medical days, um, because so many
Speaker 1: I think like half are born with congenital heart defects
Speaker 1: and that you have to go undergo surgery starting about
Speaker 1: three days after you're born when you have something like
Speaker 1: that to correct it, and it takes multiple surgeries. And
Speaker 1: before the advent of that, yeah, that was you were
Speaker 1: not going to live very long as a baby because
Speaker 1: you had a congenital defect and no one had any
Speaker 1: idea what that even was, let alone how to treat it. Yeah,
Speaker 1: it's UM. If you wonder where it gets his name.
Speaker 1: In eighteen sixty two, there was a English physician named
Speaker 1: John langdon Down that's where the name comes from, who
Speaker 1: first identified it. UH. And it was sort of an
Speaker 1: important distinction at the time because it did make a
Speaker 1: distinction between UM, what at the time they categorized as
Speaker 1: a mental disability and an actual sort of well, you know,
Speaker 1: it took a long time before they identified the chromosome issue,
Speaker 1: but UM, it was a big distinction at the time,
Speaker 1: and for many many years they UH in this. You know,
Speaker 1: Olivia helped us put this together, points out that this
Speaker 1: is very offensive in many different ways. But the term
Speaker 1: mongoloid was used UH, and this could be an interesting
Speaker 1: short stuff. It was based on the idea that if
Speaker 1: you were white and you had Down syndrome, then you
Speaker 1: might resemble someone who is East Asian or what they
Speaker 1: referred to as Mongolian back then, which was and this
Speaker 1: is the part that I think would be interesting is
Speaker 1: Johan Blueman Box racial classification UH system, which was Caucasian, Mongolian,
Speaker 1: which was East Asian Malayan, which is Southeast Asian, Ethiopian,
Speaker 1: which was basically any part of Africa, and then American,
Speaker 1: which meant indigenous Americans. Um. Obviously that's super outdated, but
Speaker 1: I think it could make for an interesting, like historical
Speaker 1: short stuff. I think it might actually be its own
Speaker 1: um episode because I was thinking into it. Yeah, and
Speaker 1: apparently it's still generally respected even though it is the
Speaker 1: terminology is outdated, and of course there's way more um
Speaker 1: subcategories of people, and the idea of race is even
Speaker 1: considered a social construct now. But Bluemenbach is considered the
Speaker 1: first scientist to purposefully divorce racism from science. Yeah, so
Speaker 1: as racist as you know, calling someone Mongolian out seems
Speaker 1: um like his purpose was to prevent that, to to
Speaker 1: just create a specifically scientific approach that's not racist to
Speaker 1: um two different types of people. Yeah, maybe we should
Speaker 1: tackle that. The long and short of this, though, is
Speaker 1: that the term mongoloyd was around, Like I remember hearing
Speaker 1: that word when I was a kid. Yeah. That was
Speaker 1: Divo's first single in Yeah, that was the first single
Speaker 1: they ever released, was Mongoloyd. I love Devo? Yeah, I mean,
Speaker 1: otherwise they're they're pretty great, good feeling what a song. Yeah.
Speaker 1: The more I listen to them more, I'm like, these
Speaker 1: guys were just amazing. And then to think of like
Speaker 1: them performing in the late seventies and early eighties and
Speaker 1: coming up with this, it's like they weren't working off
Speaker 1: of anybody else's stuff. It seemed like they were their
Speaker 1: own group. This good kids music too. By the way,
Speaker 1: if you're a parent and you have a young kid
Speaker 1: and you want to introduce him to cool music, like
Speaker 1: something about Diva like really made my daughter dance or
Speaker 1: early on, oh do whip it maybe the best song
Speaker 1: to dance to and definitely to run to as well.
Speaker 1: I have one more little music tidbit um uh music
Speaker 1: titles that were unkind to UM people with down syndrome, Uh,
Speaker 1: black Eyed Peas. Do you know the UM song Let's
Speaker 1: Get It Started? Yeah, that was a re record. The
Speaker 1: NBA came and said, hey, can you re record your
Speaker 1: song Let's get are worded? Which is the original title
Speaker 1: of it? Oh? Really yes, And they re recorded it
Speaker 1: for the NBA and ended up releasing it as a single.
Speaker 1: It became a huge hit. But that is not Let's
Speaker 1: Get It Started as not the original title of that
Speaker 1: song or original lyrics. That's true, and that was the
Speaker 1: two thousand three that is a black eye on the
Speaker 1: black eyed peas sor uh. So that term, the term
Speaker 1: mongoloid um, was actually sent to the World Health Organization
Speaker 1: in nineteen sixty uh from the nation of Mongolia and said, hey,
Speaker 1: maybe you shouldn't be using this word anymore. But it
Speaker 1: took a little while for it to catch on that
Speaker 1: we shouldn't be using that word. Uh. And now we
Speaker 1: just say down syndrome like we should. Yeah, it's not
Speaker 1: a downy or a down person or anything like that's
Speaker 1: a person with down syndrome like any any other condition. UM.
Speaker 1: And that's also why because it's named after John Langdon
Speaker 1: down why it's a capital D lower case S when
Speaker 1: you spell it out. Yeah, And you know a lot
Speaker 1: of people say downs, which is incorrect. But I have
Speaker 1: seen that that has kind of become kind of accepted,
Speaker 1: and I think it felt a little more like resigned
Speaker 1: to than except you can see that so, Chuck. One
Speaker 1: of the things that UM is just a real blemish
Speaker 1: on the history of humanity, and I think UM, I
Speaker 1: hope becomes even more so as we progress as a species. UM.
Speaker 1: People with down syndrome. Uh, we're targeted for you an assists.
Speaker 1: Like right out of the gate, they were an obvious
Speaker 1: population to target. They were considered um completely dependent on society,
Speaker 1: a burden to their families, UM. And the premise was
Speaker 1: that you either needed to institutionalize them essentially from birth,
Speaker 1: like back in the day not too long ago, when
Speaker 1: you figured out that your baby had Down syndrome, you said,
Speaker 1: here you go, state, thank you for taking care of
Speaker 1: this child for the rest of his or her life.
Speaker 1: We're washing our hands of him or her or they
Speaker 1: were um sterilized against their will or both. Yeah, it's
Speaker 1: very sad and shameful. And uh, I mean that that
Speaker 1: that's sort of what we've seen in time and time
Speaker 1: again of any kind of UM mental issues that people had.
Speaker 1: It was just like, you know, put them behind closed
Speaker 1: doors where everyone else can just not think about it anymore. Right,
Speaker 1: So that's I mean, they were neglected, They were probably beaten.
Speaker 1: In many K races, they had no access to medical
Speaker 1: care or any kind of stimulation. They were just basically
Speaker 1: left to rot for the for the sole reason that
Speaker 1: they had Down syndrome. And again this was based on
Speaker 1: really faulty information the idea that they would never speak,
Speaker 1: that they couldn't walk correctly, they would never be able to,
Speaker 1: um uh perform any kind of like socially productive work
Speaker 1: or anything like that. There they were just to be
Speaker 1: left in these institutions. And finally, in the sixties, the
Speaker 1: whole de institutionalization movement that really started to take hold
Speaker 1: that we kind of referenced in the rosen hand Han
Speaker 1: experiment episode, UM that that benefited people with Down syndrome too,
Speaker 1: And so they were released from the institutions and were
Speaker 1: now raised in at home in the community, and almost
Speaker 1: immediately the life expectancy for Down syndrome people skyrocketed because
Speaker 1: it turned out the greatest risk factor for death for
Speaker 1: Down syndrome person was being institutionalized. That's how mistreated they were. Man,
Speaker 1: I mean that that's hard to even uh swallow, you know, like, hey,
Speaker 1: it turns out if we care for people and treat
Speaker 1: them as human beings and give them love and healthcare,
Speaker 1: then they'll thrive and survive. It's really sad, but it's
Speaker 1: it's actually, you know, since the nineteen seventies, um, it's
Speaker 1: not sad, it's been wonderful. By two thousand seven, Americans
Speaker 1: with Down syndrome live an average of forty seven. Um.
Speaker 1: I've seen that number average go as high as sixty.
Speaker 1: I think there was an Australian study that edited about
Speaker 1: sixty Between nineteen seventy nine and two thousand three, the
Speaker 1: rate of death within the first year dropped from eight
Speaker 1: point five percent to five percent. And the quality of
Speaker 1: life has just been there's been a huge sea change. Uh.
Speaker 1: And we're like I said, we're talking within our lifetime.
Speaker 1: This was like pre nineteen eighties. Keep we're still being
Speaker 1: institutionalized u from infancy infancy sometimes so they were you know,
Speaker 1: not necessarily banned, but just sort of weren't brought out
Speaker 1: in public, weren't taken to the movies, weren't taken to
Speaker 1: parks and things like that. Even in Benjamin Spock, you know,
Speaker 1: the very famous doctor Spock who wrote the famous baby book.
Speaker 1: This was a you know, supposedly progressive person at the time,
Speaker 1: said that, uh, mongoloid babies should immediately be institutionalized, since
Speaker 1: if the infant merely exists at a level that is
Speaker 1: hardly human, it is much better for the other children
Speaker 1: and the parents to have him cared for elsewhere. Yeah,
Speaker 1: and This is Dr Spock, who was considered extremely progressive
Speaker 1: and arguably the person who ruined the baby boomer generation
Speaker 1: by giving poor advice to their parents. But regardless, he
Speaker 1: was a very progressive voice. And this is what he
Speaker 1: was saying. That's how widely UM assumed this. This, this
Speaker 1: whole idea about down syndrome people was that late in
Speaker 1: in the century. So UM Again, in the sixties and seventies,
Speaker 1: the disability rights movement comes along and says, hey, these
Speaker 1: people are being mistreated for no good reason. If you, UM,
Speaker 1: you know, if you visit with somebody who has been
Speaker 1: raised at home with parents who send them to school
Speaker 1: and care about their simulation, they're actually like their i
Speaker 1: Q starts to increase tremendously, I think. UM. There was
Speaker 1: a study from nine that found that UM down syndrome
Speaker 1: people raised in institutions had an average i Q of
Speaker 1: twenty to thirty UM and then those raised at home
Speaker 1: with stimulation had i Q of about fifty five. And
Speaker 1: as people kind of change their perception, or I should says,
Speaker 1: down syndrome people changed other people's perception more and more.
Speaker 1: They started to graduate from high school, graduate from college,
Speaker 1: get driver's licensees, get married UM and just start living
Speaker 1: more and more normal lives. Again, depending on the amount
Speaker 1: of UM self sufficiency they're able to maintain. Some people
Speaker 1: with down syndromes live with their parents for the rest
Speaker 1: of their lives. Some people have an apartment with their buddies,
Speaker 1: some live alone. And it's just again, it's a spectrum
Speaker 1: of what they're capable of or even what they are
Speaker 1: interested in. Yeah, and I was about to say, I'd
Speaker 1: love to see that study today because that was all
Speaker 1: the way in ninety nine. But thankfully you're not going
Speaker 1: to get that study today because they're no longer institutionalized
Speaker 1: like that. Yeah, there's one part of that study that
Speaker 1: I bet that they could just do i Q studies
Speaker 1: and a bet that would be even higher. Is what
Speaker 1: I was trying to get to. If it was a
Speaker 1: good study, you could reproduce it using the same methodology
Speaker 1: today and you'd be able to compare the institutionalized to
Speaker 1: that you know, stimulated at home. Yeah, that's a good point.
Speaker 1: So let's talk a little bit about UH. Development and
Speaker 1: this is sort of all over the map intellectual if
Speaker 1: it's development social development, and again these are generalizations, UH
Speaker 1: and you know you'll see in a lot of cases
Speaker 1: that UH, kids with Down syndrome can be behind in
Speaker 1: some ways by just a little bit, sometimes behind by
Speaker 1: a little bit more, sometimes ahead in other areas. UH.
Speaker 1: And it starts at birth basically UM in infancy, things
Speaker 1: like feeding UH. And this is because of the muscle
Speaker 1: tone issues UM and hypermobility. Things like UM feeding during
Speaker 1: infancy can cause problems or you know, problems with feeding
Speaker 1: which can lead to constipation problems. UH. They may be
Speaker 1: a little smaller physically at first and be a little
Speaker 1: slower on the growth curve uh than their peers typically
Speaker 1: develop UM. But as they you know, they kind of
Speaker 1: catch up as they get older, and that generally improves
Speaker 1: and UM those developmental milestones you know, feeding themselves, dressing
Speaker 1: and stuff like that. Using the toilet you mentioned speaking,
Speaker 1: they might happen a little bit later, right, I saw
Speaker 1: it explained as they they can and do develop skills
Speaker 1: throughout their lives, but they just reach goals at a
Speaker 1: different pace, and all kids reach goals at different paces.
Speaker 1: So it's just about setting expectations, is apparent. One of
Speaker 1: the things that is available now that is really helping
Speaker 1: to increase not just life expectancy but also quality of
Speaker 1: life among people with Down synd room is occupational therapy.
Speaker 1: They've figured out that basically the moment that you realize
Speaker 1: that your child has Down syndrome after they're born, UM,
Speaker 1: you want to start different kinds of therapy. I think
Speaker 1: occupational to start because it's so hands on and physical.
Speaker 1: But UM, some of the things I saw that you
Speaker 1: can do at home because they have smaller fingers and
Speaker 1: smaller hands and pinkies that curve on average. UM, one
Speaker 1: of the things you want to do is help them
Speaker 1: learn to hold a pencil properly or you know, manipulate
Speaker 1: things with their hands better. So you have them play
Speaker 1: with plato or UM paste areos to UM like UM
Speaker 1: construction paper or something like that. Stuff that like you
Speaker 1: you use like the very fine motor skills for and
Speaker 1: then also ones that require like big motor skills like
Speaker 1: UM I saw. Focusing on your core is really important
Speaker 1: because there's a lot of people with downs RUM are
Speaker 1: considered to not be able to engage in self care
Speaker 1: because again it's a cognitive disorder disability. It's actually not
Speaker 1: necessarily the case in all cases. UM, It's that their
Speaker 1: core is not strong enough or toned enough to hold
Speaker 1: themselves up while they put on a sock or tie
Speaker 1: their shoe or something like that. Yeah. Absolutely, So that's
Speaker 1: what occupational therapy does, is helped get that stuff in
Speaker 1: order so that they can start to excel and hit
Speaker 1: those goals sooner. And the occupation in this case is
Speaker 1: being a baby. That's your job. Uh. Social functioning, Um,
Speaker 1: it's usually a little less delayed. If you have a
Speaker 1: baby with Down syndrome. You might be looking at a
Speaker 1: week or two sometimes for things like recognizing faces, looking
Speaker 1: at faces, smiling back at somebody, recognizing a smile, uh,
Speaker 1: communicating through just like gestures and you know that Google
Speaker 1: Gaga type of stuff. Uh. You know, could just be
Speaker 1: a week or two. Some kids, UH might have a
Speaker 1: greater reading ability than might be typical for someone uh
Speaker 1: their age or at their cognitive level. Um, the delays
Speaker 1: and spoken language we've talked about a little bit. Uh,
Speaker 1: Their math and their number skills might be a little
Speaker 1: bit behind, usually about two years behind the reading skills.
Speaker 1: But if the reading skills are a little advanced, you know,
Speaker 1: it might not average out to be that much farther
Speaker 1: behind than their peers. UH. And then you know, there's
Speaker 1: so many different ways kids learn these days, and that
Speaker 1: kids are being taught according to their needs, which is
Speaker 1: the biggest like breakthrough in education of the past, like
Speaker 1: a couple of decades, is recognizing that, like not every
Speaker 1: kid is in a box and learns the exact same way.
Speaker 1: And if you have down syndrome, then you have much
Speaker 1: better visual processing and visual learning skills than maybe with words.
Speaker 1: So you're gonna be working with your teacher either, you know,
Speaker 1: sometimes a special classrooms, sometimes in just the regular classroom
Speaker 1: to work with that uh, work with that kid to
Speaker 1: you know, teach them a little differently. Yeah, I think
Speaker 1: um integrating classrooms together with people of different cognitive levels,
Speaker 1: especially you know, if you're now teaching people differently rather
Speaker 1: than making them all conformed to one thing, that seems
Speaker 1: like that would allow for integrated classrooms a lot more,
Speaker 1: which I think is absolutely wonderful. Yeah, and you know,
Speaker 1: it happens in all kinds of ways. You talk to
Speaker 1: your school, see what kind of support that you can get. Uh.
Speaker 1: Sometimes it's just regular class for most of the day,
Speaker 1: and then they're specialists who come in for a couple
Speaker 1: of hours, maybe every day, sometimes a few days a week. Uh,
Speaker 1: if you're um, if you're able to, sometimes you can
Speaker 1: hire someone privately to to ass with stuff like that.
Speaker 1: But it's it's just you know, be in good contact
Speaker 1: with your school and with your teachers, and it's just
Speaker 1: a different scene than it was when we were kids. Yeah,
Speaker 1: and um, you can thank your federal government for passing
Speaker 1: laws that banned discrimination in public schooling against cognitive disabilities.
Speaker 1: The Idea Act and then the A D A M
Speaker 1: both guarantee um quality public schooling for kids of different
Speaker 1: cognitive abilities and uh, in fact like tailored schooling depending
Speaker 1: on their needs. Which hats off to that one, because
Speaker 1: I can tell you not every state would offer that
Speaker 1: if that weren't a law. No, they wouldn't took. I
Speaker 1: had one foot up on a soapbox. I'm gonna step
Speaker 1: back down. That was very close, very close. So let's
Speaker 1: take a break and I can shake it off. How
Speaker 1: about that? All right, We'll be right back. Okay, we're back, Chuck.
Speaker 1: And before we get started, we just want to give
Speaker 1: a little shout out to our ongoing pledge drive for
Speaker 1: our friends, A Cooperative for Education, right, that's right, the
Speaker 1: great nonprofit in Guatemala that we've been working with for
Speaker 1: many years. Let us know that the stuff you should know.
Speaker 1: Army since we started working with him, has donated just
Speaker 1: about a hundred thousand dollars shy of a million bucks.
Speaker 1: So we want to help them get to that million
Speaker 1: dollar mark. And there's a really quick easy way to donate, right. Yeah.
Speaker 1: They set up a page just for you to go donate. Um.
Speaker 1: It's Cooperative for Education dot org slash s y s
Speaker 1: K and it's a very painless process. Just chip in
Speaker 1: whatever you can and if everybody chips in whatever they can,
Speaker 1: then we'll come up with a bunch of money for
Speaker 1: COED to use to help kids in the mall to
Speaker 1: break the cycle of poverty. That's right. Should we talk
Speaker 1: about down syndrome testing, let's because it's a fairly new thing.
Speaker 1: Um until I think that really kind of the eighties
Speaker 1: is when it really started to becoming much more common.
Speaker 1: You were you had no real idea whether your baby
Speaker 1: was going to have down syd um or not until
Speaker 1: they were born, even sometimes after they were born. That's right,
Speaker 1: But now that's different, right, they have different kinds of
Speaker 1: tests that they can do. Is early is nine to
Speaker 1: thirteen weeks I think, yeah, there are a few different
Speaker 1: kinds of tests that can be used together to make
Speaker 1: this determination or separately or uh, well, I guess those
Speaker 1: are the two ways. Um. The first thing that you
Speaker 1: might start with is a blood test, and this is
Speaker 1: between nine and thirteen weeks gestation, and that is measuring
Speaker 1: um plasma protein pregnancy plasma protein A, which is called
Speaker 1: p A p p A. And then something we've talked
Speaker 1: about before HC G human uh corean ganata tropin right,
Speaker 1: very nice. Um, After that, between eleven and thirteen weeks,
Speaker 1: you're gonna have an ultrasound that's gonna measure the back
Speaker 1: of the fetus's neck to see if there is any
Speaker 1: unusual fluid collecting there. And then a doctor will take
Speaker 1: the ultrasound that first test, and they will see the
Speaker 1: maternal age and then say, all right, this may be
Speaker 1: the likelihood of you having a baby with Down syndrome, right,
Speaker 1: And if it's really high, they'll say, we we recommend
Speaker 1: you do more invasive testing, because that's the thing. A
Speaker 1: blood tests, they're just taking blood from the mom and
Speaker 1: checking it out and um, it's not very invasive, but
Speaker 1: it's also not quite as accurate as a more invasive
Speaker 1: test like amniocentesis. Yeah, and also carries zero risk. The
Speaker 1: blood test yeah, UM, although it's risky if you don't
Speaker 1: like needles. Well, yeah, that's true. There's also another one
Speaker 1: called choreonic villas sampling or CVS and UM. One uses
Speaker 1: cells from the placenta. One takes a sample of amniotic fluid.
Speaker 1: The annual synesis does and UM. They're a little more
Speaker 1: invasive UM and because of that, there is a a
Speaker 1: slight chance that the mother will miscarry UM from the test.
Speaker 1: And they always blame the tests forever, but now I
Speaker 1: think they're starting to think that there's a chance that
Speaker 1: in at least some of the cases the miscarriage would
Speaker 1: have happened, regardless that it actually wasn't the test that
Speaker 1: triggered it. UM and I saw everything from one in
Speaker 1: a hundred pregnancies miscarry after the test all the way
Speaker 1: to one in nine hundred in Alberta, which is apparently
Speaker 1: where you want to get these tests carried out. The
Speaker 1: chances much much lower there, but they're they're accurate. That's
Speaker 1: why they perform these tests in the first place. That's right.
Speaker 1: And then there's a new test sort of the newest
Speaker 1: thing going. UH. It's UH non invasive. It's called in fact,
Speaker 1: noninvasive prenatal testing and IPT or screening n i p S,
Speaker 1: and that analyzes and this is really stuff. It analyzes
Speaker 1: fragments of DNA UH from the blood and some of
Speaker 1: that is going to come from the placenta, with the
Speaker 1: idea that placental cells or placenta cells d n A
Speaker 1: is usually identical to that of the fetus. So it's
Speaker 1: a really simple way to screen for these abnormalities really
Speaker 1: early on, like ten weeks in. It's been around since
Speaker 1: about twenty of has become much more popular, but UM
Speaker 1: it has still not been cleared by the f d A,
Speaker 1: and the f d A even this year said don't
Speaker 1: just get that test, Like, if you want to get
Speaker 1: that test, you can get that test, but UM, just
Speaker 1: don't look at those results alone, right. And the reason
Speaker 1: the FDA would say anything like that is because the
Speaker 1: point to these tests for the vast majority of people
Speaker 1: who get them are UM to determine whether they're going
Speaker 1: to keep this pregnancy or not. UM. There's a lot
Speaker 1: of concern among people who are UM part of the
Speaker 1: Down syndrome community that there's not a concerted effort to
Speaker 1: UM wipe out people with Down syndrome from the diversity
Speaker 1: of you know, human types. Um. But that a million
Speaker 1: different individual UM decisions, all going the same way, can
Speaker 1: ultimately have the same effect. It really depends on where
Speaker 1: you are in the world. Again, that so I think.
Speaker 1: I call her Sophia Zang. I'm sorry, her name is
Speaker 1: Sarah Zang. She wrote that article in The Atlantic. Um, yeah,
Speaker 1: it was really wonderful. She um. I guess if an
Speaker 1: article about UM accidentally eradicating Down syndrome people from Earth
Speaker 1: could be wonderful, it definitely is. But um she uh.
Speaker 1: She focused on Denmark, where there's something like I think
Speaker 1: of UM people who come back with a screening that says, yes,
Speaker 1: your baby is going to have Down Synemer has Down syndrome. Um,
Speaker 1: they abort, They choose to abort the pregnancy. And I
Speaker 1: think it's even higher in Iceland. I think it's approaching
Speaker 1: a dent in Iceland, and as a result, the number
Speaker 1: of people with Down syndrome being born there's plummeting in
Speaker 1: I think two thousand and eighteen, Sarah Zang said in Denmark,
Speaker 1: eighteen people were born in the whole country with Down syndrome.
Speaker 1: Only seven of them were purposefully born. The other eleven
Speaker 1: had gotten false negatives and had carried on with the
Speaker 1: with the pregnancy, and you presume that some of them
Speaker 1: probably would not have otherwise. I wonder, I don't know.
Speaker 1: I wonder what it is about that part of the world.
Speaker 1: I don't know, because if you read the article, she
Speaker 1: really goes on about how that that country in Scandinavia,
Speaker 1: I think in general, really kind of considers itself like
Speaker 1: very diverse, um, culturally and very inclusive and they're not
Speaker 1: like anti disabled, uh people or anything like that. But
Speaker 1: when it comes down to it, it's like, yeah, those
Speaker 1: individual decisions, very private decision. Um, can they add up
Speaker 1: to that in in private and public? It's different? In
Speaker 1: private it's a completely different different game apparently. Yeah. And
Speaker 1: you know, we should also mention that when you get
Speaker 1: these tests done and they come back, you have that
Speaker 1: choice to make. But a lot of times it's also
Speaker 1: like uh, preparing yourself, like, yeah, I'm gonna go through
Speaker 1: with this pregnancy, and I want to know what to expect.
Speaker 1: I want to prepare myself. I want to educate myself.
Speaker 1: I want to um, you know, there's there's money involved,
Speaker 1: which we're gonna talk about in a minute. So I
Speaker 1: want to get my finances UM squared away, or make
Speaker 1: sure I can have it squared away. I think the
Speaker 1: I guess we should talk a little bit about some
Speaker 1: of the statistics. UM. The abortion rate for Down syndrome
Speaker 1: positive pregnancies UH is declining, you know, for sure. UM.
Speaker 1: It's it's kind of tough in the US because they
Speaker 1: don't have great stats apparently, but the CDC said between
Speaker 1: seventy nine and two thousand three UH the number of
Speaker 1: babies borns with babies born with Down syndrome increased by
Speaker 1: over that time frame, and al analysis found that termination
Speaker 1: rates for fetuses with Down syndrome was between UH sixty
Speaker 1: seven and eight and was declining. Yes, and that's the
Speaker 1: US only. It doesn't appear to be declining in some
Speaker 1: of the Scandinavian countries for example. In other places in
Speaker 1: the world, I think Japan and China also have really
Speaker 1: high abortion rates for Down syndrome positive pregnancies. But the
Speaker 1: U s um there's a few factors at play for
Speaker 1: UM why they would be declining and the down syndrome
Speaker 1: population would be increasing. UM. I think the national Down
Speaker 1: syndrome society says about today about people with Down syndrome
Speaker 1: are born each year, and there are, like I said,
Speaker 1: a few reasons why it's increasing. One is just because
Speaker 1: they've been brought of institutions and people have been able
Speaker 1: to see like, oh, yeah, these are human beings. They're
Speaker 1: different from me, but there's still human beings and they're
Speaker 1: the same as me in a lot more ways than
Speaker 1: I realized. And also again anecdotally, they're amazing people to write. Absolutely,
Speaker 1: it's like, oh goodness, When I we just accept people
Speaker 1: as people, then everything gets better. Right. So that was
Speaker 1: that was just one factor. There's some others too. Uh yeah,
Speaker 1: one of them. Well, one factor is Hispanic women are
Speaker 1: much more likely to give birth regardless of whether or
Speaker 1: not they have down uh syndrome, positive pregnancy happening right. Uh.
Speaker 1: And then another factor that can be complicated is that
Speaker 1: these screenings used to be something that you specifically request.
Speaker 1: Now they're a little more standard, So that could just overall,
Speaker 1: you know, if you're just gonna have more screenings, that
Speaker 1: could increase the overall percentage of those positive results of
Speaker 1: people who still continue with that pregnancy and increase the
Speaker 1: total number of terminations, so I guess all the numbers
Speaker 1: would be rising. Right. Also, the fact that people are
Speaker 1: giving birth later on average is increasing the rate of
Speaker 1: Down syndrome pregnancies to begin with, and that that means
Speaker 1: that just by by definition, more Down syndrome people are
Speaker 1: being born. So I think the number one factor is
Speaker 1: um being able to take people with Down syndrome to
Speaker 1: the park now has just changed everything. Yeah, Um, I
Speaker 1: mentioned money, and there is you know, if there are
Speaker 1: more medical complications on average, Uh, then there are going
Speaker 1: to be more medical costs on average, and that is
Speaker 1: definitely something that people need to think about. I think
Speaker 1: among there's one study among children between birth and age
Speaker 1: four that at private insurance, the average medical care costs
Speaker 1: were about twelve times higher if you had Down syndrome.
Speaker 1: And I think about families with a child with Down syndrome.
Speaker 1: Um had a family member that stopped their job, that
Speaker 1: stopped working to care for them full time, and about
Speaker 1: also said it caused the financial strain on their family, right, Um,
Speaker 1: And I mean there's plenty of other challenges as well. Um.
Speaker 1: One of the things about people with Down syndrome is
Speaker 1: that they age faster. Their bodies just age more quickly
Speaker 1: than people without Down syndrome. UM statistic I saw is
Speaker 1: that a person aged forty with Down syndrome, UH, their
Speaker 1: bodies probably about five years older than their peers um
Speaker 1: and in the general population. And then at sixty, their
Speaker 1: bodies about twenty years older than the average sixty year
Speaker 1: old in the general population. UM. And then one of
Speaker 1: the things that I think really kind of looms like
Speaker 1: a dark cloud over the Down syndrome community is that
Speaker 1: there's a really good chance that they will develop Alzheimer's,
Speaker 1: probably better than a fifty percent chance. I saw an
Speaker 1: editorial in the Washington Post that said a ninety percent
Speaker 1: chance either way. It's a really good likelihood that they're
Speaker 1: going to develop Alzheimer's. It's a big problem in the
Speaker 1: Down syndrome community. Yeah, you sent me that stuff, but
Speaker 1: I didn't get a chance to look over the reasons why.
Speaker 1: But they they've kind of think they've isolated why right, Yeah,
Speaker 1: So that that twenty one chromosome, right, um, that you
Speaker 1: they often have three copies of that third copy actually
Speaker 1: boost production of what's called amloid beta, and amloid beta
Speaker 1: is one of the things that's responsible for the creation
Speaker 1: of plaques on the brain that leads to Alzheimer's. So
Speaker 1: is another um substance called TAO, and people with Down
Speaker 1: syndrome produce more of this stuff, so their brains age faster,
Speaker 1: so they develop Alzheimer's at a much younger age, and
Speaker 1: they're they're much more likely too, because they're overproducing these
Speaker 1: proteins that create the plaque um and then also in UM.
Speaker 1: The Down syndrome population, Alzheimer's starts to present differently. It's
Speaker 1: not really memory loss or for forgetfulness that's like an
Speaker 1: early signed. It's more and this is very said, reduced
Speaker 1: interest in being sociable, conversing or expressing thoughts, and decreased
Speaker 1: enthusiasm for usual activities. So there's a lot of people
Speaker 1: who are like, Okay, well, we're starting to work on
Speaker 1: Alzheimer's and testing new drugs, obviously we're going to include
Speaker 1: people with Down syndrome in those tests. And that is
Speaker 1: absolutely not true. As a matter of fact, there was
Speaker 1: a test that the FDA explicitly excluded people with Down
Speaker 1: syndrome from for testing in Alzheimer's drug yes, and so
Speaker 1: there's there's a real movement to like start to include
Speaker 1: people with Down syndrome in these clinical trials, and it
Speaker 1: seems to be starting to to gain some traction. But
Speaker 1: it's just completely insensible to to just exclude the group
Speaker 1: that I guess, on average has the highest likelihood of
Speaker 1: developing Alzheimer's of any other human group around. Yeah. So
Speaker 1: it's funny. When I was reading this stuff that Livia
Speaker 1: sent us, was getting um a little frustrated with like
Speaker 1: this study says this, and you know, we talked to
Speaker 1: parents that said this, and I was like, well, you know,
Speaker 1: has someone talked to people with Down syndrome and about
Speaker 1: how they feel? And good news is Livia held it
Speaker 1: till the end, and they've done just that uh many times.
Speaker 1: In fact, that was she found one study in two
Speaker 1: thousand eleven, and this is of kids twelve and older
Speaker 1: with Down syndrome, and of them said they were happy
Speaker 1: with their lives. Uh. Seven percent said they liked who
Speaker 1: they were, uh, said they like how they look, said
Speaker 1: they love their family, and eight six percent said they
Speaker 1: could make friends easily. And then they asked it some
Speaker 1: sort of open didded questions just to get like, you know,
Speaker 1: real world answers, and uh, you know, most of these
Speaker 1: kids did express some frustrations with their condition. Um, but
Speaker 1: it was parts of their condition and not their lives
Speaker 1: and not like this is my life is just so
Speaker 1: frustrating as is like this one part of my life
Speaker 1: is frustrating. And obviously a lot of this stuff in
Speaker 1: high school and like in puberty, they found that, you know,
Speaker 1: there were more reports of kids being sad who had
Speaker 1: Down syndrome and not adjusting as well. And you know
Speaker 1: that's that's called puberty and being in high school and
Speaker 1: it's uh, probably especially rough if you have Down syndrome,
Speaker 1: but those are the changes that are going on with
Speaker 1: every kid, and so it may be a little more
Speaker 1: pronounced at that age. Yeah. And this, um, this is
Speaker 1: a really good study to skim. It's called Self Perceptions
Speaker 1: from People with Down Syndrome. It was led by Brian Skoto,
Speaker 1: was from two thousand eleven. It's available for free online
Speaker 1: and it has just it's just chock full of quotes
Speaker 1: from the study. And he even says that they conducted
Speaker 1: the study because so many people are being presented with
Speaker 1: all of the downsides of Down syndrome when they're told
Speaker 1: that their child has Down syndrome, and do they want
Speaker 1: to keep the pregnancy, and he's like, we need to
Speaker 1: get other data that shows the full picture out there
Speaker 1: to people too. That's why he conducted this. But it's
Speaker 1: a really great study to read. And one of the
Speaker 1: things that it kind of points out without overtly pointing out,
Speaker 1: is that people at Down syndrome generally are aware that
Speaker 1: they have Down syndrome, that they're different in some way,
Speaker 1: and yet despite that, this study shows that they're way
Speaker 1: happier on on this self first self reported study granted
Speaker 1: than the average person UM twelve and older in the
Speaker 1: general population. Yeah, it's it's a really and you know,
Speaker 1: I hate that we saved this stuff to the end,
Speaker 1: but it's kind of a nice way to leave things.
Speaker 1: I think for sure. I want to shout out to
Speaker 1: other amazing well three other amazing people, um well four, five, five,
Speaker 1: But in three groups you're always in there. Um. One
Speaker 1: is Paul and Chris Sharoon Deforge. I believe when Paul
Speaker 1: died they both had Down syndrome. They both they have
Speaker 1: been married for twenty five years. Pretty amazing. Um. There
Speaker 1: was a woman named Lisa White who was fifty back
Speaker 1: in two thousand sixteen. She had Down syndrome. It still
Speaker 1: doesn't believe she's around. But one of the things that
Speaker 1: was so amazing about two thousand six teams that Lisa
Speaker 1: turned fifty and her son Nick, her son Nick, who
Speaker 1: also has Down syndrome, turned twenty. That is really rare
Speaker 1: in the community. But it also shows like this woman
Speaker 1: has Down syndrome and she raised a child and she
Speaker 1: was living independently. Also, yeah, uh, we can also shout
Speaker 1: out people like Sujiete de Sai, who was the first
Speaker 1: musician with Down syndrome to play at Carnegie Hall, has
Speaker 1: played in all fifty states thirteen countries. Uh, if you
Speaker 1: saw the great movie the Peanut Butter Falcon, really good
Speaker 1: movie is that I haven't seen. Yeah, it's really good.
Speaker 1: Has Shyla buff in it. But zach Um gotts again.
Speaker 1: I think his house pronounces the actor. He's been in
Speaker 1: a bunch of stuff. But Peanut Butter fact and was
Speaker 1: certainly the highest profile movie and it's a really, really good,
Speaker 1: good flick. Okay, I'm gonna check it out. I mean,
Speaker 1: there's special Olympians who are on the national team, UM
Speaker 1: runaway models. Um arguably the famous person, the most famous
Speaker 1: person with Down syndrome, Chris Burke who played Quirky on
Speaker 1: Life goes On. Gotta shout out Chris Burke for sure.
Speaker 1: Chris Burke, who played Quirky. Life Goes On was a
Speaker 1: very big show and a big deal as far as
Speaker 1: raising awareness, Like it seems like it just a sort
Speaker 1: of a trite thing to shout out the guy who
Speaker 1: played Quirky, but that show was. It was a game changer,
Speaker 1: and not only with just Down syndrome, but just awareness
Speaker 1: in how people viewed a lot of different kinds of disabilities.
Speaker 1: So he's worked with the National Down Syndrome Society h
Speaker 1: for a long time and it's just a great ambassador
Speaker 1: for that group and speaking you gotta shout out. I
Speaker 1: also want to shout out Kayala McKeon, who manages grassroots
Speaker 1: advocacy for the National Down Syndrome Society. She also has
Speaker 1: Down syndrome herself. She was also the first registered lobbyists
Speaker 1: in America with Down syndrome. And we met her Chuck,
Speaker 1: because she came to our Atlanta show, Um where um,
Speaker 1: we had the National Down Syndrome Society come and then um,
Speaker 1: what was the name of the animal charity that you supported? Oh?
Speaker 1: The local one? Yeah, Uh lifeline, Lifeline. That's right, That's
Speaker 1: what I was gonna say. So, UM, Kayla as a
Speaker 1: very cool person who is still at it from what
Speaker 1: I can tell, So shout out Kayla and everybody at
Speaker 1: the n d SS. Awesome. And then we have one
Speaker 1: more thing we just have to cover too. We can't
Speaker 1: not mention it. That article from UM I think New
Speaker 1: Scientists that there's a study that was carried out and
Speaker 1: it was just among seven adult men with Down syndrome
Speaker 1: over six months, but they gave them uh pulses of
Speaker 1: geneta trope and releasing hormone g n r H and
Speaker 1: it improved their cognitive function over six months. That's like
Speaker 1: going from a thousand to add on the old school
Speaker 1: s a t that actually tested cognitive ability. Yeah. Yeah,
Speaker 1: when you put in that perspective, it's nuts giving them
Speaker 1: one hormone. And again that's what actually increases and gets
Speaker 1: triggered when puberty hits, which also coincides with the decline
Speaker 1: and cognitive ability among Down syndrome people. So they may
Speaker 1: have figured out something really big, not just for Down
Speaker 1: syndrome people, but for Alzheimer's as well. We gotta shout
Speaker 1: out one more thing Okay, now where were running long?
Speaker 1: But our very own Jerry sent this to us. Uh.
Speaker 1: Although it's called Jerry's Habima Theater h A B I
Speaker 1: m A uh, it is not our Jerry's Theater, just
Speaker 1: strictly coincidence. And I didn't know about this. This is
Speaker 1: in Atlanta. It's on tilly Mill Road, and it is
Speaker 1: a professional, uh theater company of actors and they all
Speaker 1: have special needs. And apparently there is a show that
Speaker 1: goes on I think it's this in March every year.
Speaker 1: It's coming up March nine through to save the date
Speaker 1: for Cinderella, and tickets go on sale in January. And
Speaker 1: this is an all inclusive theater company that puts on
Speaker 1: these plays and it's looks like a wonderful thing. I
Speaker 1: think Jerry said that she had been and it's like
Speaker 1: one of the most fun best things uh and as
Speaker 1: well as being supportive, but just a really fun thing
Speaker 1: to do. So go check out Jerry's Habima Theater. Okay,
Speaker 1: I'm out of stuff for now. I got I mean,
Speaker 1: we could plug people all day, but I'm out of
Speaker 1: stuff too. Okay, if you want to know more about
Speaker 1: down syndrome, that's really something that you should go out
Speaker 1: and learn more about and while you're doing that, in
Speaker 1: the meantime, I say it's time for listener mail. I'm
Speaker 1: going to call this UH pretty quick follow up from Fundamentalism.
Speaker 1: It was released today and as it happens, we start
Speaker 1: getting emails minutes after release, usually about forty five minutes after,
Speaker 1: although sometimes people jump the gun and email us during
Speaker 1: an episode. Hey guys, thanks for the recent episode on fundamentalism.
Speaker 1: You put into words exactly what I've been going through
Speaker 1: for the past couple of years. I come from a
Speaker 1: very fundamentalist Catholic family and have been dealing with all
Speaker 1: the joy that comes from expressing a different viewpoint. My
Speaker 1: wife and I are both atheists, and this has been
Speaker 1: a point of contention with my family never since we
Speaker 1: have decided to have a non religious wedding. UH. The
Speaker 1: tension is only increased since we have welcomed our daughter
Speaker 1: into the world and had to deal with my family's
Speaker 1: push to baptizer. The episode on fundamentalism is some very
Speaker 1: good points and definitely allowed me to look at the
Speaker 1: situation in a different light. The issue is closed mindedness
Speaker 1: and not necessarily religion. Appreciate all you guys do all
Speaker 1: the best that is from Jake. Awesome, thank you for that.
Speaker 1: I can imagine that their wedding someone said God bless
Speaker 1: you two, and they were like, get out. You know,
Speaker 1: I'll take a guy bless you. I don't mind it.
Speaker 1: Uh when you sneeze her anytime. Anytime, if someone uh,
Speaker 1: I don't know, if my grocery store check her outer
Speaker 1: just says God bless you have a blessed day, I
Speaker 1: just say, you know what, thanks very much, because that's
Speaker 1: that's a kindness that they're bestowing upon me in their
Speaker 1: own way. Oh yeah, I'm like, you've never heard of
Speaker 1: separation of church in public. You're fired as you're smashing
Speaker 1: a sheet cake into your mouth. That's exactly right, because
Speaker 1: those things don't make it out the door. Well, thanks
Speaker 1: a lot for sending us that email, Jake, And if
Speaker 1: you want to be like Jake, then you can send
Speaker 1: us an email to uh stuff podcast at iHeart radio
Speaker 1: dot com. Stuff you Should Know is a production of
Speaker 1: I Heart Radio. For more podcasts my heart Radio, visit
Speaker 1: the i heart Radio app, Apple Podcasts, or wherever you
Speaker 1: listen to your favorite shows.