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24 and Me · Why We Do What We Do

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You're listening to why we do what we do? Welcome to why we do
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what we do. I am your Loving People with Disabilities host Abraham and I
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am your wearing my fancy socks host Shane Wearing psychology. You always get me,
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it's so good. We're a psychology podcast. We talk about the things
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that people do, what animals do, why they do them, and sometimes
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we talk specifically about diagnoses and disabilities. Yeah, it doesn't come up as
0:41
often as maybe it could, but it is one of those ones where I
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think that both of us have spent a lot of time working with folks with
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IDDD diagnoses, and this is I think a topic that is near and dear
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to both our hearts. Yes, and will you elaborate those acronyms and initialisms
0:57
for people, yes, I'm sorry. IDD means intellectual delay developmental disability.
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Yes. So those are the populations with whom we have some experience of familiarity
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and I think a general respect and appreciation, and we try and have that
1:10
come through in our discussions. And we have unpacked a variety of diagnoses on
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this show, but for a psychology podcast, we don't dig into them that
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often, and primarily I think because it's usually simply describing, this is what
1:25
this thing is, here's the history, here's the treatment, and that can
1:27
be interesting, and that's kind of what I think we have to say about
1:30
today's discussion. But you know, trying to find that hook, the angle
1:34
the discussion is always a critical piece to have people feel like they're really getting
1:38
something meaningful out of it. And I think sometimes you just got to have
1:42
the passion and I feel like I've got that for this topic. Yes,
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absolutely, these are some of my favorite folks to work with and to hang
1:49
out with and volunteer with. It's just ah, they're the best. Now,
1:55
if you are joining us for the first time, welcome, Thank you
1:57
for joining us on this podcast. I hope you enjoy today's episode, and
2:00
if you do, you can support us by leaving us a rating and review,
2:04
by subscribing, by joining us on Patreon, by picking up some merch,
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by starting a charitable organization that donates to a disability community and naming it
2:12
why we do what we do, and then just giving us at least a
2:15
small piece of that credit while you can do all the hard work, and
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thank you for doing that, and you rear you the best yeah, so
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great. You're so wonderful. I'll talk more about how you can support us
2:23
at the end of this discussion. Also, if you're joining us for the
2:27
first time, we like to welcome you to the variety of dates that we
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have to celebrate on this our February fourteenth. Happy Valentine's Day, Shane.
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Yeah, Happy Valentine's Day, Abraham, we love you. It's also ash
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Wednesday, So don't freak out if you see people with smudges on their faces.
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Yeah. I think I mentioned on this on this podcast before the first
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time because I had never seen the like the black cross on the forehead until
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I was in my mid twenties, and all of a sudden one day,
2:59
people just walking around with these black smudges on their face, and it was
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like, was there like a fire somewhere And people like are just kind of
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going about their day now, like what happened? Yeah, it's it's an
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interesting thing. I don't think I noticed it until I was an adult either,
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and I was like, what is happening? Yeah, maybe I just
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didn't notice. But it's also Frederick Douglas Day, so go read you some
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Frederick Douglas. M Yep, he had tiny bed. Oh I heard that.
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Well, I got to do a tour of his house when I was
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a kid, he had tiny bed, he slept see this sitting up?
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Apparently it's also League of Women Voters Day. That sounds good. Yeah,
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this is Library Lover's Day, so Shane Shane falls night camp. Oh yeah,
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big fan. Libraries are so important. It's a National connibal Awareness Day.
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I guess that lines up with Valentine's Day pretty well. Yeah, and
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Library Lover's Day. What does the lover's part mean? There also National Cream
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Filled Chocolate's Day, so maybe that's related to nice, real nice. I
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did see that Easter cane is coming out, and so Cadbury eggs are back,
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and I am just such a it's it's a weakness of mine. It's
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my kryptonite. I will eat so many Cabery cream eggs. It's a real
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problem. It's also National Donor Day, so like it makes sense because it's
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Valentine's Day, so you give someone your heart. It's the last thing.
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But it's so nice. The sentiment is nice. It's Pet theft Awareness Day.
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Don't steal people's pets. That's nice. That's bad, that's so mean.
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It's Read to your Child Day, which I think lines up with Library
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Lover's Day hopefully, Yeah, I would hope. So Alzheimer's Disease and Dementia
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Staff Education Week, so specific remember this week. Yes, it's also a
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celebration of Love week. You know. I guess they're going to extend Valentine's
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Day for a couple more days. Yeah, it's val Valentine's Week. It
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is getting Dizzy week, so yeah, Dizzy with love, Dizzy with Love.
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The last, but not least, is that it's Love Data Week.
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Oh I love data, which we both yeah, we both like that one.
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But feel the love and love in the data. We don't actually just
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talk about the dates. We also like to dig into the topic at hand,
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which is actually really all we should be doing. But that's where we're
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at at this point. This has become kind of a joke. But dare
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I say we say that this will be a short episode. Yeah, it's
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one of those things where it's a running kind of talking point with us,
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and we're going to see exactly how long we can make this one. So
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yeah, let's go ahead and do it. I guess let's see what we
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do. Let's see what happens. Let's see what happens. And I will
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also say we haven't actually said this yet. We are talking about Down syndrome.
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We're going to dig into a little bit of the history, the diagnosis,
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the treatment, the complications, etc. What it is and what you
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should know about it, and all those questions that you might have. And
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maybe you're someone with Down syndrome or you know someone with Down syndrome, and
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that's great, and I would have loved I definitely have people around me that
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have Down syndrome and I should have invited them into this discussion. But here's
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the issue. I planned this and started writing it about twelve hours ago before
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recording. That is an insufficient amount of time to ask someone to dedicate time
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to, you know, come in and join us for this discussion. So
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my bad. I'm really sorry. If you are someone with Down syndrome or
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know someone with Down syndrome who would like to come on and talk with us,
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we would absolutely love to have them. Please come our way one way
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or another, reach out to ustrikely let us know. You can reach us
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at info at wwdwwdpodcast dot com. I'm sorry we don't have one of you,
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folks, on here to have this discussion with We will do our best
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and please join us. We'd love to have your voice. Yes, we
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love doing follow ups, so anytime, feel free to reach out. We're
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more than happy to chat. Yes, I just need to plan better,
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is the problem here? Because I just got the inspiration. You know.
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You know, we kind of have a little bit behind the curtain for folks
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that are listening. You know, we have a little bit of a Science
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Fair project vibe going on here where you know, we kind of procrastinate to
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the last minute and get it all done. So you know, it's one
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of those things where we put the notes together usually the day of or the
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day before, and so we really try. I mean, and that's not
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to say that we don't read a lot and do a lot of stuff on
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this beforehand. It's just usually when we write the notes, it's the day
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of or the day before. So you knoweah, because we get really into
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it, we do our rabbit holes exactly. You know. It's like we
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knew we wanted to talk about it at some point, and I sort of
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put it on the list and then, like I said, about twelve hours
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ago, I'm like, I really want to do this tomorrow and just yeah,
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decided that that was what I was get to. The muse struck me
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and I was like that it is time to write this, and so I
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did. And so anyway, that left us no time to invite a person
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with down syndrome onto our podcast to join us. And as I said,
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I'm sorry, but we should have. And I hope that someone will join
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us in the future so that we can talk to them about this and we'll
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plan better. Yes, So in the meantime, I think we can go
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and dive into the topic. Let's do it, and just to kind of
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from the very beginning, Yeah, we're going to talk about down syndrome,
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and it is so important to start with how we even get there. Yes,
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if you are not familiar, when two people love each other, or
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they drunkenly meet it a frat party, or they just hook up, or
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they do all kinds of things, right, they don't even have to love
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each other. It could just be a thing that happens. They might do
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this thing called sex. And when they do, depending on what gam meats
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they bring to the table, a sperm and an egg, right, they
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bring their ingredients to the table, and whether or not some sort of contraception
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is used those gam meats combine. Yes, that's we're starting here. It's
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important actually to start here for reasons. We'll explain. Each gam meat is
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a haploid's cell, which means that it contains a single set of chromosomes.
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Now, in the human's case, a set contains twenty three chromosomes, which
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means that once they combined, they will have forty six chromosomes that are in
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Paris, it's twenty three and twenty three. Each one of those one through
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twenty three will line up, so they will have two one chromosomes, to
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two chromosomes, to three chromosomes, et cetera, all the way up through
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their twenty third chromosome and the twenty third chromosome just FYI, just fun thing
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to know, is the one that determines the spectrum of sex, leaning female
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or leaning male. The spectrum of sex is in fact a spectrum, because
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despite what you might hear, it is not ever even so clear cut as
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a being one hundred percent one way or the other. Most of the time
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there is a variety of ways that that can show up. And that's not
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what we're talking about today. I just wanted to share that it was that
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last twenty third chromosome where that happened bing dino DMA. Yeah. So about
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one in every seven hundred too, About one in every one thousand babies will
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have a random change occur during the cell division process that results in an extra,
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partial, or full twenty first chromosome, such that the child will have
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forty seven total chromosomes instead of forty six. For this reason, it is
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technically called trisomy twenty one, meaning three copies of chromosome twenty one, rather
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than the more common to copies, although there are two other types that we'll
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talk about later. So it's kind of like, you know, from a
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simple explanation, like I think of like when I have to make copies at
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a printer and then like one of the sheets just like has too much ink
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or the toner's gone or something happens. Like I've got all my copies,
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but I've got an extra one that was kind of a proof copy that didn't
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really work very well. All right, yeah you could. I mean,
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that's that's probably not terribly far off. We'll get a little bit more into
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the genetics of this, but that's essentially what happens is that we have these
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little chromosome things. They determine more or less what we're going to look like.
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And if you have an extra copy in a twenty first one, then
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you'll have this thing called Down syndrome. Now, why is it called that.
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The history of this is colorful, as you would imagine for anything that
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has to do with psychology or the medical field or anything like that. Yes,
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particularly with the date of this one, because this is a random alteration
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that can happen during pregnancy. It is simply part of the human condition and
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has been described or depicted or alluded to an art and literature for thousands of
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years pretty much as long as we have records of humans, there's some indication
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that they've had the experience of Down syndrome people being born around and there.
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However, it was not completely described or even identified as a specific thing until
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it was named for a man, John Langdon Down, a British physician who
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first classified this in eighteen sixty six. And so if that gives you any
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idea where this is going, you can probably predict and it's where you think,
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Yeah, fair, heads up. There's going to be some discussion around
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some of the terminology and some of the racism that was occurring around this thing,
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this particular diagnosis at the time. So I just want to kind of
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prepare everyone for that. Yeah, trigger warning, this is aggressively racist and
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bigoted, and we'll do our best to not be jerks about it. So
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Down believe that it was possible to quote classify different types of conditions by ethnic
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characteristics end quote. And that was from the article Adaman at All in two
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twenty twenty one. Now, the paper that described tri some me twenty one
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was called quote Observations on the Ethnic Classifications of Idiots end quote. So yes,
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that was again eighteen sixty six. We know better, we do better.
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Amidst the variety of conditions to which he cavalierly assigned an ethnicity. For
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some reason, he called the condition that he would later be diagnosed as having,
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Like when we talked about Down syndrome specifically, he originally called it mongolism
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and the people with its condition mongoloids. So that's where that term comes from
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if you are unfamiliar with that. And yes, again this is in reference
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to an ethnicity, which he believed was how you would classify this thing.
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Because anyway, Yeah, his paper was almost autobiographical in its title, in
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that way, so nice anyway, just to crack a little joke at the
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expense of someone who did not need to go down that route, and again
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also accepting that like they didn't really know better, they were just learning this
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for the first time. They had a lot of stupid hypotheses that they would
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not know. We're stupid in their entire lifetimes. That is where we are,
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right, But we know how stupid these are, and they are ads
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had to do it, But we're back. The advertisers did the thing,
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all right. A question you may or may not have. The question that
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comes up a lot is is it down or Down's syndrome Downs with an apostrophe,
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and technically both are listed as acceptable names. In America, down syndrome
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without the apostrophe S has generally been accepted as the preferred spelling. I wonder
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if the desire to apply down as an adjective and the fact that down is
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already a common English word had some influence on the decision to add the S
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at the end. Using it as as an adjective to describe a Down's child
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would mean something different most English. To most English speakers than a down child,
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And that's just kind of more speculation. It's hard to say. Language
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is strange, language is interesting, language is unique, and language requires a
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lot of social context and regional variants. It is possible also that they just
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wanted to apply ownership to John Langdon Down and so it's Down's syndrome. But
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who knows. I couldn't find it any definitive reason why they decided to cling
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to Down as the name, other than he was the person who first described
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it as being its own condition and did so comprehensively, right, anyway,
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that's sort of where we at. So he was simply describing essentially the physical
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characteristics and other characteristic features of what would later be called Down syndrome. He
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didn't know that it was a chromosomal difference that was responsible for the physical presentation
14:48
of that condition, because they really didn't know anything about chromosomes at that time
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at all. Right, that really didn't come until nearly a whole century later,
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because this was eighteen sixty six, and it was not until nice eighteen
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fifty nine. It was actually January twenty sixth, so we actually just barely
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missed the sixty fifth anniversary of this. Wow, I know, right,
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by French geneticists. And this is a very long name Jerome Jean Luis Marie
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le June. Wow, often just called doctor I think Joe thought there,
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doctor Joe. Yeah, that's what it is, doctor Lejeune, I think
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is the most common. But anyway, so this discovery that this was a
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chromosomal condition and what the chromosomal condition that was responsible for creating down syndrome was
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this absolutely kicked off basically a whole new field, like a research field into
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genetic conditions by looking at things like chromosomes as they related to some of these
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genetic outcomes. So it was a groundbreaking moment in medical history. Yeah,
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this is huge right now at the time that's recording, it's twenty twenty four,
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and so research on genetics has advanced so rapidly, and they do so
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much interesting saying stuff, and especially when it comes to genetic anomalies or any
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sort of like you know, specifically chromosomal mutations and all that. Like,
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there's so many things that are interesting to unpack within that. So this is
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this is a big deal. I mean, this was this is like a
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pivotal moment in human history for studying this type of thing and I think that
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doctor Lejune lived until like maybe twenty fourteen or something like that. So yeah,
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they would have lived to have seen a huge amount of development that occurred
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as a result of their discovery, which would have probably, I imagine,
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been very satisfying for them. That's all that I feel like scientists just want
16:37
is to know that they did something helpful, right, and could you imagine
16:40
doing that, like we were like, okay, I found we found this
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thing and it sparked us. You know, I so much help for so
16:45
many folks hopefully, so right, Yeah, I hope so. And I
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also hope that they were not I didn't really research this this person, so
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I hope that they were not a terrible person. Yeah. Yeah, I'm
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we don't know the Watson showing up here. Yeah. I hope that they
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both deserved that recognition and enjoyed it later. And if I'm wrong, feel
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free to come on and correct me. We'll and we'll speak to that in
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a later episode. Yeah, we're fine with the dendums. We're good with
17:11
thedendyms, like, we have no problem with that. Yeah. So,
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as we said earlier, there are actually three types of Down syndrome, or
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chromosome twenty one alterations. So ninety five percent of people with Down syndrome have
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trisomy twenty one, in which the extra chromosome occurs during the development of the
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sperm or egg cell. So basically it's just an alteration that happens during the
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cell splits. And this is ninety five percent of people that have Down syndrome
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exactly. Yeah, a cell splitz, one chromosome goes one way, another
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one goes the other way, and this case, two go one way and
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another copy of one goes the other way, ending up with three. However,
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there are these rare instances in which an extra chromosome occurs only in some
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cells rather than all cells after fertilization occurs, and this is called mosaicism or
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mosaic Down syndrome. And again that just me that rather than all cells having
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the forty seven pairs of chromosomes, you have forty six plus the extra chromosome.
18:07
Some of them have that and not all of them, Okay. And
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then there's a third type of Down syndrome called translocation down syndrome. Right,
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So, in translocation down syndrome, quote, a portion of chromosome twenty one
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becomes attached or translocated onto other chromosomes before or at conception. These children have
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the usual two copies of chromosome twenty one, but they also have additional genetic
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material from chromosome twenty one attached to other chromosomes, and that comes from the
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Mayo clinic. We found a resource that indicated that this was often chromosome fourteen,
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so where that additional chromosome that copy was attached to would attached to fourteen
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as well. Yeah, it just attaches to another chromosome for some reason,
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and then you get this sort of translocation down syndrome. So it's not actually
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an extra chromosome, it's an extra like piece of twenty one. Chromosome twenty
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one copied also, right, So it's like but they're all sort of in
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the spectrum of Down syndrome, but most of them are that trysome twenty one.
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Basically, what it is is that chromosome twenty one makes a copy.
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How it applies or how it manifest or how it shows up is where the
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three different types come in. Yes, it always starts with twenty one.
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Yeah, that's the magic number. So we need to get into a lot
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of sort of what down syndrome even is we sort of talk about this as
19:21
being the cause. Like we know that when you have these changes to the
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cell during the cell division that result in an extra twenty first chromosome, you
19:30
get Down syndrome. Right. Why that happens, we're not totally sure,
19:33
and we'll talk about that. I think it's really important to state here so
19:37
that everybody is very clearly aware. Down syndrome is not a disease. It's
19:41
not an illness, it's not an affliction, it's not contagious, it's not
19:45
even technically hereditary. And really what that means is that this seems to happen
19:52
somewhat randomly. Like you try and look at some factors wealth, diet,
19:56
chemicals, ethnicity, nothing really seems to predict whether or not someone is likely
20:02
to have a child with Down syndrome. We don't even know exactly what causes
20:07
those rogue changes to occur, although there are some sort of known risk factors
20:11
if you want to call them that. Primarily it's that this does tend to
20:17
happen in older parents. So as we said, it's about one in seven
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hundred to like one in one thousand, like in that range of children at
20:23
the age of like I think it was about thirty five, it goes to
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about one in three hundred. By forty five it goes to one in one
20:32
hundred, and then after I want to say fifty, it goes to like
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one in thirty. Wow. The correlation between the occurrence of Down syndrome increases
20:41
pretty rapidly as age increases in the parents. So waiting later in life is
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just more likely that that kind of alteration is going to happen. Again,
20:52
not a guarantee, sure are still most people, the vast majority of people
20:55
are not going to have a child with Down syndrome, even if they have
20:57
a child later in life. It does mean that someone who has a child
21:00
with Down syndrome, if they have more children, they're more likely to have
21:04
another child with Down syndrome. We don't tend to get any younger between children,
21:10
right, we just keep aging. As it turns out, Yeah,
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weird. And therefore, if you are already going to have one, there
21:17
is a somewhat elevated chance that you may have another one. But again,
21:21
even most cases that's not true. It's just as an elevated likelihood right absolutely,
21:26
Now, the way that it might actually be hereditary though, is in
21:29
the translocation Down syndrome variation. So because in translocation Down syndrome, some of
21:33
that twenty first chromosome may be attached to other chromosomes, these can be passed
21:38
from either parent to child during conception, so that's really the only time that
21:41
they're seeing the hereditary part. But otherwise it's a fairly random thing. Yeah.
21:47
Yeah, it really does seem like anybody. This could have impact any
21:51
family, any person anywhere. Just happens, right, part of the human
21:55
condition. Sometimes this happens, and however it occurs, whyever it o hers.
22:00
It does come with some relatively common physical characteristics and some complications that we
22:06
should get into. Now we're gonna start talking about a little bit of the
22:08
symptoms that go along with this. And as you might expect, before genetic
22:11
testing, down syndrome would be diagnosed only after birth based on physical characteristics.
22:17
And so if you've ever been around somebody with Down syndrome, there are some
22:21
pretty clear characteristics that you can identify. Yeah, and this is due to
22:23
the fact that Down syndrome frequently comes with these these common physical features, which
22:29
includes things like a flattened face, especially the bridge of the nose being really
22:33
low and sort of close to the facial plane, as well as sort of
22:36
almond shaped slanted eyes, and the way they say the eyes are slanted up.
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What they mean by that is that the outside corners are elevated so that
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it almost kind of forms a sort of V shape, if you will,
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Like the inner corners of the eyes are sort of a little bit lower and
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the outer quarters a little bit higher. Right. This is also apparently called
22:52
palparable fissures as a name for this, and that just has to do again
22:57
with how it's oriented. Right. Some folks with down centrim may have a
23:02
shorter neck, They may have small flat ears, and they may have small
23:06
hands and feet and short fingers and toes as well. Often they'll also have
23:11
flat feet. I saw many pictures that also indicated like a pretty widely far
23:15
apart big toe from the other toes, But yeah, flat feet. They
23:18
also often have the tongue that sort of protrudes from the mouth slightly when they're
23:22
in a relaxed state, so the tongue might just be poking out a little
23:26
bit, right. They may be a little bit shorter than most folks.
23:30
They may have tiny white spots on the iris of their eye. This is
23:33
called brushfield spots, which is I think interesting. I've never heard that until
23:37
just now. I didn't bother to look up the history of why it was
23:41
called brushfield spots. I felt like enough people were getting their name dropped for
23:45
their relative contributions to this that I didn't need to shortplore all of them.
23:49
But another common feature is just poor muscle tone, a really low muscle tone.
23:55
I think maybe poor is not the right word, but low muscle tone.
23:56
But interestingly, they also tend to be highly flexible. Right. They
24:02
may also have broad shorthands with a single crease in the palm, and they
24:04
may experience slower growth and development. Now I think I want to point out
24:08
here is that this is not necessarily true for every single person that has Down
24:12
syndrome, But these are very very common things that you might see in folks
24:18
as they physically develop. Exactly, they might have one of these features,
24:22
They might have a few of these features. They might have all of these
24:25
features. But even sometimes they might have none of them, and they might
24:27
be barely visible at all, and sometimes they're very apparent either way. Just
24:33
because these are physical characteristics of Down syndrome, we always want to point out
24:37
that people with Down syndrome all going to look and act as unique individual humans
24:45
that they are. Yes, so it is not correct, it is not
24:49
appropriate, But it's also not accurate to say that they all look the same
24:52
or they might have some physical features that are somewhat characteristic of that diagnosis,
24:56
but they look like their parents, you know, they just have like rose
25:00
features. So like they're individuals, they're humans, They're people that are there
25:07
unique in who they are. I would hope that would go without saying,
25:11
especially for our listenership, but just in case, Yes, every person,
25:14
if they have Downs German not are their own person, but every person with
25:17
Downs German are absolutely their own person. They are going to look different from
25:21
one another. Is not a copy of the person across multiple humans. It
25:26
is unique individuals with unique interests and unique personalities. And I think it's so
25:30
so so important to reiterate that. Yes, yeah, and you're right.
25:34
I would hope it would go without saying, and I just felt like it
25:37
was worth pointing out just in case there was a misconceptions about that. Sure,
25:41
I would hope that we could go an entire episode without having to play
25:45
some ads. Okay, so we've been talking about some of those physical characteristics,
25:56
and also I think it's worth talking about besides the how this is sort
26:00
of identified. So as testing has gotten more sophisticated, scans and blood tests
26:06
can determine in utero if a child is likely to have Down syndrome, giving
26:08
families more time to prepare for the kind of supports that they may need.
26:12
This is a common discussion around the Down Syndrome Advocates group and support groups and
26:18
parents that are like new parents. There's a lot of discussion around this,
26:23
I think, and it's going to be really interesting to get into. First
26:26
thing, there's kind of two ways to go about this. There's screening,
26:30
which essentially looks for how likely is it that a child will be born with
26:34
Down syndrome? Right, And then there's testing which identifies, yes, this
26:38
child has Down syndrome or no, this child does not have Down syndrome.
26:42
Right. That's one thing to know about this. The other thing is there
26:45
was kind of a wormhole I decided not to go down about this testing and
26:52
how it relates to people's decision to have abortions. First of all, we've
26:56
talked about abortion. We did two episodes on this. I believe it a
27:00
two parter, or at least we did an episode. Yeah, where we
27:02
come from politically is fairly clear. We're in supportive people and whatever is best
27:06
for the health and well being of people, and abortion is medical health care,
27:10
and I think people have a right to medical health care. There's a
27:12
lot of nuance that goes into that. And I also, like I think
27:15
advocacy groups would And again I didn't really dig into this because I felt like
27:21
I didn't really want to go this route in this discussion, right, But
27:23
they point to like the fact that you're going to have a child with some
27:27
kind of genetic disability or abnormality or difference is not cause to say that this
27:34
is not going to be the kind of life that you would enjoy, right,
27:40
meaning that you get to have a child, like you're wanting to have
27:42
a child, you get to have a child, it's going to be the
27:45
child that you have that is your child, and love them the way they
27:48
are. And I think that in general, I would agree with that sentiment.
27:53
And I don't want to pose my own values or morals in any way
27:57
on people's choices about this, other than to say, make you know the
28:00
choice that's best for you and your family and what you think you can do.
28:06
And I think hopefully as we describe more of Down syndrome, me will
28:10
understands that, like, these are wonderful people and the world needs a lot
28:12
of them. In my yes, which we'll get to in a second.
28:15
Agreed anyway, didn't want to go down a huge rabbit hole in that.
28:19
My opinion is my opinion. Your opinion is your opinion. We mostly wanted
28:22
to talk about this from a psychological perspective, so we'll continue down that route.
28:26
I apologize if if I got anyone really worked up, but hey,
28:30
maybe I got your attention. You're like, really really listening now, so
28:33
maybe there's that yeah, I mean, and please feel free to write in
28:37
and have a discussion. I mean, we're we're more than happy to do
28:38
that too, So let's do it. So. One of the major features
28:41
of Down syndrome, or at least common features, is cognitive impact. Conditive
28:45
impact comes up quite a bit. Not that every single person with Down syndrome
28:49
has a major cognitive impact, but it is something that does come up quite
28:53
often, and you'll see that discussion more often than that. Now, part
28:59
of this is speech delay the low muscle tone that's commonly seen as a feature
29:03
of physical characteristics of Down syndrome often mean that speech can be difficult or delayed
29:10
because the muscles in our throat and our tongues are muscles and they will use
29:12
them for speech development. So if those are delayed in some way, that
29:17
can impact speech development because those muscles just need a little bit more to work
29:22
in a way that allows it to develop at a pace that generally is prescribed
29:26
as being expected. So, in addition to what we've talked about with speech
29:30
development, people with Down syndrome may have a wide range of cognitive impairments and
29:33
delays in their development. So this can vary greatly depending on the person,
29:37
depending on unique circumstances. It can depend on a lot of things, but
29:41
one common feature of Down syndrome is difficulty with short or long term memory,
29:45
which can also be apparent in difficulty with learning. So sometimes memory gets in
29:48
the way of learning. It can be a unique challenge and it's not that
29:52
they can't learn, it's just that they may take a little bit more time
29:55
and some additional support or at least some really good resources around or that person's
30:00
unique learning needs. Yes, and sometimes it is it is very impactful and
30:06
very difficult to get to a point of total independence, and sometimes it takes
30:11
very little. It just takes like a little bit of additional support and they're
30:14
totally there for it. And I mean that is the case for literally all
30:17
kids of all backgrounds and all like across the spectrum. Way. Yeah,
30:21
So again, they're not different really in that way from people who don't have
30:26
Down syndrome, right, But one thing is that Down syndrome can be comorbid
30:30
with other diagnoses at a somewhat higher rate than you might find in the general
30:33
population, such as autism, ADHD, anxiety, and depression, which may
30:41
be counterintuitive to how some people experience individuals with Down syndrome, But that definitely
30:45
is a diagnosis that can be co morbid with Down syndrome, and it's important
30:48
to be aware of that, right. And just like the physical characteristics that
30:52
we just talked about, this is going to be unique, these kinditive like
30:55
impairments or anything that might be going on here, these co morbid diagnoses,
30:57
they're going to be unique, and it's highly individual to that person. So
31:00
every person with Down syndrome is a unique person with their own personality, set
31:04
of strengths and difficulties, talents, preferences, and idiosyncrasies. We are more
31:10
alike than we are different. And I think that's really important to land on
31:14
again when we are talking about a specific diagnosis, a specific disability, anything
31:18
like that. Every single person is unique. Yes, And to that end,
31:23
as I said, there is the perception, and I've sort of had
31:26
this experience myself that the people with Down syndrome are always seen as happy,
31:30
friendly, kind, and very personable, and they're often described as as sweet
31:36
and charming and loving. And while these are beautifully complementary things and definitely something
31:41
that you will see in a lot of people who have this diagnosis, it
31:45
is of course worth reiterating again and again and again until you firmly understand this.
31:51
Everyone is different. We should not just assume that someone with Down syndrome
31:53
is happy all of the time. They experience the same spectrum of emotions that
31:57
everyone else will. They are human beings, like they have human They have
32:01
all the experiences of human beings. They may have physical characteristics that stand out
32:07
a little bit. They may have some impairments that make it so that they
32:09
require a little additional support, but generally speaking, like they're really as you
32:15
said, we are more alike than we are different those of us with and
32:19
without this diagnosis. Having worked with a lot of folks with Down syndrome that
32:22
I can just anecdotally that's been the case, right, Like, I've worked
32:27
with some that are very happy, go lucky, and like super personable and
32:29
like really friendly, and other ones that are like do not want you around
32:31
and want nothing to do with you and like, and again that was a
32:35
unique thing and had nothing to do with the fact that they had Down syndrome
32:37
and had everything to do with that that person had that specific you know issue
32:43
that day or that concern or that was just kind of how they were as
32:45
a general rule. Yeah, who they are and what they're going throughout the
32:49
time that you're speaking with them, and like I will you know, will
32:54
be sharing our opinion later. But I have loved every person I've ever met
32:58
with Down syndrome. Yeah, everyone of them has had fantastic personalities, even
33:01
you know, as you said, they're all different. They weren't always always
33:05
happy, but like I always really enjoyed who they were as people and everyone
33:07
I've ever met, so right, absolutely, I do think It's worth talking
33:12
about some complications that can come up that are kind of unique to this diagnosis,
33:15
in particular because I think that you know, just like any any sort
33:21
of I would imagine some type of chromosomal or genetic complication or alteration, it's
33:27
going to produce some unique medical issues. Yes, this can come with some
33:31
complications that require additional medical treatment or support. One common complication that I think
33:37
I've heard more than anything else is heart problems. These can be detected at
33:42
birth and may require medications or even surgery or other interventions, but it is
33:46
something that can be a serious complication for many people with Down syndrome. And
33:52
some people with Down syndrome can have gastrointestinal issues, including abnormalities of the esophagus,
33:57
trachea, intestines, and anus. They can develop intestinal bl lockage and
34:00
be more prone to acid reflux and heartburn. As a matter of fact,
34:04
those two things that we just mentioned, the heart issues and GI issues,
34:07
those two things together also produce unique aspiration risks. And so if you are
34:13
working in a space where you might have somebody who has Down to enjoyment and
34:15
also has like really severe problem behavior, you can't do any sort of restraints
34:19
that require them to lay face down. It's like they're most of the time
34:22
not medically cleared to be able to use those types of procedures in the event
34:27
of an emergency where that might be a requirement. Well, and as we
34:30
described in our episode and just excited delirium, I mean generally, just putting
34:34
someone in a face down position at all is high enough risk that you just
34:38
shouldn't do it. Like, the risk that someone could stop breathing in that
34:42
position is higher for everyone, and as you said, especially for many people
34:45
with Down syndrome, But like, let's just not create that risk for anybody.
34:50
I think, yeah, yeah, and just enrich the environment, do
34:53
better interventions so you don't have to do that. That's my thoughts, Like,
34:57
spend more time in enriching the environment and preventing that from even being the
35:00
exactly. Yeah, just provide the appropriate supports and like that will clear up
35:04
ninety nine to one hundred percent of the potential for issues that might otherwise come
35:07
up, Okay, complications. People with Down syndrome are more likely to have
35:12
a misalignment at the top of the vertebrae of the neck, which can lead
35:15
to some serious spinal complications that can necessitate surgery. Sometimes it will mean that
35:22
their wheelchair bound or require some walking supports or other kinds of medical interventions,
35:27
depending on how that affects them. But it is a complication of Down syndrome.
35:30
And also people with Down syndrome are often and again this is not everyone,
35:34
but are often they have an increased risk of obesity and have difficulty maintaining
35:38
a lower weight, which is not so easy just as just diet and exercise
35:42
for folks with this disorder, so or this syndrome. Yeah, I mean,
35:45
part of it is having the law muscle tone. Part of it is
35:49
just like this is just a feature of a thing that can happens. It's
35:52
just difficult and that of course comes with its own set of complications obesity.
35:55
So you really can't just say, like, oh, just you know,
35:59
start running every day and watching your calories like that isn't always an option first
36:02
of all. Right, if you imagine if they're having other spinal issues or
36:06
other complicated health issues, strenuous extra says may not be recommended anyway. That
36:10
might increase their risk of aspiration too. Right, It can be much more
36:14
complicated than simply those recommendations but you know, with the appropriate supports, they
36:19
can get some help to keep that as under check as possible. But again
36:22
we just also don't body shame people. I think is generally good recommendation.
36:28
Yeah, exactly, I like that recommendation. People with Down syndrome are also
36:30
at a risk of leukemia, a higher risk of leukemia and dementia, as
36:35
well as other health issues such as endocrine problems, seizures, ear infections.
36:38
It's actually fairly common to see hearing and vision impairments. They'll often require glasses,
36:44
often hearing aids, and then they may also have dental issues that require
36:47
additional support and an intervention. Right and because of these complications, people with
36:52
Down syndrome have historically died fairly early in life, unfortunately, living only into
36:55
the thirties at best. But treatment has gotten better, interventions have gotten better,
37:01
and so people with Down syndrome are actually living well into their adulthood,
37:04
even into their eighties in some cases. So we are seeing improvements and improve
37:08
mortality rates with folks, which is absolutely great, which what we want.
37:13
I hope that continues to expand. I hope that they get to live as
37:15
long and full lives as possible. And have the kind of support that's needed
37:20
to ensure that they are not needlessly suffering from medical or other cognitive complications.
37:25
Yes, exactly, which speaks to treatments we've sort of mentioned several before much
37:30
was understood about mental health or anything really people with any kind of cognitive impairment
37:36
or and often even physical impairment. In many cases, they were immediately institutionalized
37:40
like they were born and essentially whisked away to an institution if there was some
37:45
indication that they had some kind of impairment. Over time, we've learned a
37:47
lot more about the care and support of people with various disabilities, including Down
37:52
syndrome, and treatments have gotten much better. Right, And so for many
37:57
and most or all the conditions that we listed specifically related to Down syndrome,
38:00
all the stuff that has to do with heart keemi and dementia, all those
38:04
things, treatment will consist of medications or surgery specifically within that realm, and
38:07
treatment within that realm of that particular ailment. So it's not going to be,
38:12
oh, this person is getting treatment for Down syndrome. It's this person
38:15
is getting treatment because this heart condition, which may be a result of their
38:19
downsays of syndrome. But this heart condition that they have is something that we
38:22
have to treat, right. I think that's really important too. The locus
38:24
of intervention and kind of like the origin of that intervention is coming from that
38:29
kind of other complication, not necessarily from Down syndrome itself. Yeah, and
38:32
then there's a complication of being in the podcasting industry, which is that we
38:37
have to play ads. So we're talking about the treatments here that are there.
38:49
One of the important things, and this is really true of pretty much
38:52
all complications or issues that people will face. But early intervention is key as
38:57
much as is possible to prevent and help mitigate the most serious of these conditions.
39:00
For many people can help them live long, healthy, happy lives where
39:06
they're the diagnosis that they may have really has very little bearing on their overall
39:10
day to day activities. The earlier we can get in there to support them
39:15
physically, cognitively, et cetera, the easier of a time they will have
39:19
just going through sort of you know, sort of typical expected daily life.
39:22
Yeah, and for people with Down syndrome, they can be further supported with
39:25
speech therapy, physical occupational therapy as needed. Behavior analytic oriented therapies can actually
39:30
help with cognitive development and behavioral improvements. They can occur along what might be
39:36
considered what is subscribed as again this is the language catching up but quote unquote
39:38
normal developmental trajectory, so they can actually gain skills needed to live independently,
39:45
to thrive educationally. I mean, there are folks down syndrome that go to
39:50
get degrees, they go to college. There's nothing that's to stop them from
39:52
doing that except for providing some level of support so they can. Yeah,
39:57
and often early on, because particularly if it can help get them it can
40:00
prevent any particularly severe complications early on. Then you don't really need as intensive
40:07
support later either, and possibly not at all. Like you really just get
40:10
what's needed to get them thriving independently and then they're out on their own and
40:15
that's and that's great for them, and for some people it won't be that
40:17
easy. But like generally speaking, their early investment is a huge payoff down
40:22
the road. So it's one hundred percent worth it to just spend the time,
40:25
energy, resources and commitment early on. Yes, yes, so that
40:30
you aren't trying to then fix a problem later that you didn't prevent from happening
40:35
in the first place. Yes, that's what it is. I mean,
40:37
that's absolutely it. I mean it's it's it's so much better just to kind
40:39
of get in front and provide support so it's not needed later. But exactly,
40:44
y'all don't want to talk about that. So anyway, as you were
40:49
saying, people with Down syndrome are being more and more represented and included across
40:52
many fields and aspects of society and culture. People of Down syndrome participate in
40:57
sports, play music, they're actors, teachers, speakers, they work in
41:00
offices, they work at hospitals, they get advanced degrees, they write books,
41:05
they work in the government. They went from being people who were shipped
41:08
off to institutions the moment that it was recognized that they had some kind of
41:13
difference to people who are now being included across the entire spectrum of human achievement,
41:19
which I think is the best possible thing. And I think that the
41:22
awareness that is brought to people with Down syndrome can only help further that inclusion,
41:28
and I think that that should be the goal. Like, yes,
41:30
as we said, they are a unique, awesome individual people that deserve to
41:36
have every right and opportunity afforded to them as anyone else would. And so
41:40
the fact that they've gotten better and more representation is awesome. The more that
41:45
they can get that the better, because we want a society that is as
41:49
inclusive of all of those people as possible, because they have a lot to
41:52
contribute here. They want to be a part of it, and we want
41:55
them to be a part of it. They're just as uniquely suited to make
41:59
meaningful contributes as anyone else, and so it's great to give them those opportunities.
42:02
Yeah, one hundred percent. I couldn't said it better myself. So
42:06
there is a point that I think is worth talking about, and you may
42:08
have caught it as we were discussing. This is the conversation around identity first
42:13
versus person first. Language. This is something that has evolved and changed quite
42:17
a bit across anytime you're working in disabilities or working with folks with some sort
42:22
of diagnosis. The consensus that I have seen more recently is that it's the
42:28
person's preference, right, Like, That's kind of what it keeps landing on
42:30
to me, is like, you know, you hear this a lot in
42:32
the autism community, where do folks prefer saying autistic person or person with autism?
42:39
And there is still debate about that. There's no agreed upon. Right
42:43
now, it seems like the majority you're kind of going with identity first,
42:45
like saying autistic person versus person with autism. You're hearing that, but there's
42:50
not really a formal agreement and there's no written rule around this. So I
42:53
generally say, go with what the person prefers when you're talking to them.
42:59
If they prefer down syndrome person or person with down syndrome, I think either
43:04
is fine if that person prefer has a specific preference. And it's as simple
43:07
as asking like is this part of your identity? Do you want this to
43:10
be? Like? How do you want this to be applied to how I
43:14
talk to and about you? Like you want to be called a person with
43:17
down syndrome or a down syndrome person, Like do you care? Most of
43:21
them will say call me Steve, like call me by my name. I
43:23
don't give a about that because most people don't want that. It doesn't matter.
43:29
Just call me a treat me like a person, And that's really the
43:31
value you should go with. It is like treating that person like a person,
43:35
very very much so one of the places so and I'll talk about this
43:38
here in a second, but I looked at sort of the Nevada Down Syndrome
43:44
Network, and they advocated for person first language. But I think, as
43:47
you said, I think the most compassionate and most sensitive way we can go
43:51
about it is just asking for your preference, like where do you write?
43:54
Where do you fall on this? Like do you care should I just call
43:58
you Steve regardless of what your name is? Oh as somebody who does not
44:00
have Down syndrome? Who am I to make a decision for somebody with Down
44:04
syndrome on how they prefer to be called? Like, it doesn't make any
44:07
sense. And I can't believe for a second that anybody that's working in this
44:09
field has any sort of like strong opinion about that one way or another.
44:15
It doesn't matter if you don't have it. Let the person who has it
44:17
make the decision. Oh God, that's so frustrating. Okay, let me
44:21
get off my soapbox about that. No, that was good. That was
44:22
a great I think it was a great soapbox to include. Actually, the
44:25
think an important conclusion here is that this is Down syndrome is not suffering.
44:29
It's not an affliction, it's not something to feel sorry about. These are
44:31
These are just people who have a little bit of a different situation. And
44:36
again we're more alike than we are different. So just treat them as people.
44:39
Treat them as as regular individual human, unique people with their own personalities
44:45
and set of stuff going on. It's simple, I promise you. It's
44:47
that simple. It is it really truly is. Now. I've not masked
44:52
my opinion at all during this discussion. I thought that I was being more
44:54
sticking to the sort of here of the hard facts. But you know,
44:57
facts are couched in and wharrior and from and that's sort of where we're I
45:00
here. Here's my thought on this. Go meet someone with Down syndrome.
45:04
If you don't already know or haven't met someone with Down syndrome, go meet
45:07
someone with Down syndrome. Yeah, every state, or at least most states,
45:10
have some kind of Down syndrome network or something that hosts events. They
45:15
raise charitable donations and awareness, and you can just go participate, just hang
45:19
out. They raise awareness of Down syndrome events and you can go take part
45:22
of them. You can just meet some people, find an event, go
45:24
meet these people. Like I said, I have loved every person I've ever
45:28
met with Down syndrome. I want more of them in my life and in
45:30
the world. Yeah, I don't know, that is my thought. I
45:34
just I love this community. I love those people. I actually and you
45:37
know a lot of people come to this because they have a family member or
45:39
they like have a really close friend who has Down syndrome, and that's great,
45:43
And I actually don't have that. I've only met them through like work
45:46
and opportunity, and I, like I said, I've loved all of them,
45:50
and I hope to meet more of them. That's just where I'm coming
45:53
from, is like I think that everybody should go out and if you haven't
45:57
already, go meet someone with Down syndrome. You will not regret. I
46:00
have one agree. Volunteer with your local your local groups, you know,
46:04
whether it's Special Olympics, whether it is Down syndrome societies, whatever it is,
46:07
Go volunteer, Go spend some time. I promise you the time spent
46:12
with these folks will make you a better person. Ord we successfully predicted the
46:17
link this by saying it would be a shorter episode. So as for usual,
46:24
a rout of applause for us. Let's get to some recommendations which are
46:31
unrelated to all the recommendations we've already made, because that's just the thing that
46:35
we do is we just recommend some things. But before we do that,
46:37
what we need to do is give credit to where credit is due. As
46:39
I said, if you would like to support this episode, if you liked
46:43
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46:45
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47:02
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47:05
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47:30
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47:32
You are absolutely the best. We really appreciate you, and thank you for
47:36
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continues to exist. I mean not the only. Sorry, Patroon people,
47:52
you are the best listeners. You are very important, all of you.
47:53
Everyone, everyone matters, and my team of people like I just could not
47:58
do this on my own, So I need the work and support of these
48:00
people, and that includes writing and fact checking from Shane and myself. Thank
48:04
you so much for recording with me today again anytime. My friend, music,
48:07
editing, production, all of that sort of thing is from Justin,
48:10
and our social media coordinator is Elma Wilson. All Right, is there anything
48:15
that I missed, or anything you'd like to add before we get to our
48:16
recommendations. I think the only thing I would say is if you are not
48:20
sure where to start with advocacy groups or organization for folks with Down syndrome,
48:23
the National Down Syndrome Society is a good place to start. They do some
48:28
really cool legislative works, advocacy work. They provide resources and support, they
48:31
have some guidance on policy. It's a good place to start if you are
48:36
not sure where to start looking for where you can be more helpful for these
48:39
folks. And you can also if you're not in the United Well, if
48:43
you're in the United States, just go to Google, type in your state's
48:45
name and Down Syndrome network and I'm sure you will find something. Yeah,
48:49
if you are not in the United States, look at your city or country
48:53
or local municipality, whatever it's called, Google that, or use whatever search
48:58
engine you prefer to use and look for Down syndrome network and you will almost
49:01
certainly find something. But yeah, look around online. You will find resources
49:05
and activities and events going on where you can be engaged. You can just
49:08
go hang out, or you can do some other contributions and that's all good.
49:13
Yes, I love it awesome. All right, Well, let's get
49:15
to some recommendations. Yay, recommendations. Okay, I am recommending a movie
49:29
that I saw recently. This is featured only on Hulu. I believe this
49:32
is a Hulu exclusive, so if you have access to Hulu, go check
49:37
that out. Otherwise, this might be a little bit tricky, although I
49:38
believe that they do come around to other platforms at some point somehow. This
49:43
is a movie that is called Self Reliance. This was written and directed by
49:46
Jake Johnson. Also has Anna Kendrick and Natalie Morales in it. This is
49:52
what is actually described as in what I agree with as the genre of sort
49:55
of comedy thriller sort of. There is a lot of action, there's a
50:00
lot of comedy. There is a lot of sort of white knuckle suspense type
50:05
moments going on. I found it really engaging in a lot of fun.
50:08
So and it's not terribly long. I think the movie is only around two
50:12
hours, maybe a little less than that, maybe like hour forty five or
50:15
something. Okay, I don't want to give too much away. I think
50:16
suffice it to say it's one of these like guy gets enrolled in an internet
50:21
game where his life is at stake. Ah. Yeah, one of those
50:23
type of things. And so there it is. I like that. That's
50:28
so fun. I am going to add it to my list because I am
50:30
making more of an effort this year to watch more movies and television. So
50:36
I want to make sure that I'm doing a better job of that, and
50:37
I want to stay up to date. I want to make sure that I've
50:38
got you know, I want to know all the pop culture things. I
50:43
don't want to get lost in the fray, Like I don't want to end
50:45
up in a situation where like I am now where I've never watched a single
50:47
episode of Game of Thrones, and I'm like, I have no idea what
50:51
people are talking about. You know, I want to be in the zeitgeist.
50:52
All these references, what do they mean? What do they mean?
50:57
What is that dragon queen? So I'm going to recommend an album, and
51:00
this is gonna come with a bonus recommendation within it, so I consume music.
51:05
It's probably a problem. It's yeah, it's it's a real it's a
51:09
real concern. I think if this were any other thing, people would be
51:13
like, you need to go get help. Really stretching. Spotify is like,
51:16
how much is an appropriate amount to charge and they're like, well,
51:19
based on Shane's we do not charge enough. Yeah, it was so I
51:23
got my wrapped last year and it was something like ninety thousand minutes of music
51:28
I listened to in the year. It was like something like twenty three days
51:30
straight that I listened to music. Yeah, remember you mentioning that it was
51:36
so much music. So anyway, this is an album that I really love.
51:38
And it's not in print anymore, it's not on Spotify. It's really
51:42
it's I don't think it's difficult to find, but it is one that I
51:44
think is like this beautiful gem. And that's the band Archers of Loaf and
51:47
they have a live album that came out in two thousand called Seconds Before the
51:52
Accident. I think this was released right after they broke up, and this
51:54
was like the only live recording they had had that was like a full album.
51:59
Wow, they've come back and they've put out more albums, and they
52:01
put out a live album called Curse of the Loaf Cool, which is really
52:06
good. It's a really good live album. But the difference is the set
52:08
list that's on this live album is really good, and I like it because
52:13
it's messy, like it's it's not a really clean, great recording like now
52:19
it's a great recording, but they're like the musicianship is not like as tight
52:22
as some of the other show and I really like that about live albums.
52:25
And so sure, I was able to find the CD on disccogs. If
52:31
you go on discogs dot com, which is an older recommendation, like you
52:35
can go in and find like all these like these albums that are no longer
52:38
impressed, these rare records. Like so I found the CD and I found
52:42
less than Jake does. And they put out one vinyl that was called Greased
52:46
that was them doing covers of the Grease soundtrack. Oh I I actually saw
52:52
that when it came out, but I didn't get it. Yeah, but
52:53
they can't publish it or print it anywhere because of copyright laws. So but
52:58
it does exist, and so I was able to find that ONGs as well.
53:00
So bonus recommendation is discogs if you're looking for old music that you grew
53:02
up with that you can't find for some reason. It's kind of like a
53:05
UCD store vinyl store. You get it from independent seller. So which is
53:08
really good. Okay, yeah, And just to be clear for everyone,
53:12
it kind of sounded like you were saying disc hogs, which would read us
53:15
disc chogs if you're reading it, but it's dscogs disc cog, yes,
53:22
dis cogs. Yeah, and you can also keep track and value your record
53:25
collection on there too, so oh hey, it's like what I do with
53:29
my games on board game Gigga. Yeah, that's exactly what it is,
53:31
except it's just for music now cool. All right, Well, if you'd
53:37
like to tell us about a thriller, comedy or a relatively unavailable live album
53:40
from a band, you should certainly reach out to us and tell us.
53:44
If you like to comment on anything that we said about down syndrome in this
53:46
episode, we are interested in hearing from you. You can email us directly
53:50
info at wwdwwdpodcast dot com. You can also reach us on the social media
53:53
platforms. We really want to talk to everybody, so yeah, feel free
53:58
to get in contact with us. Is there anything that I missed? Right?
54:00
I think you'd like to add before we say our goodbyes. Nope,
54:02
not today? All right, Well that was not a shorter one because we
54:05
said it was going to be but here we are. This is Abraham,
54:08
this is Shane. We're out. See ya. You've been listening to Why
54:13
We Do What We Do. You can learn more about this and other episodes
54:16
by going to WWDWWD podcast dot com. Thanks for listening, and we hope
54:22
you have an awesome day