Episode #56: Building a Supportive Community for Individuals with Down Syndrome
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In this episode, we take a tour of the new location for Gigi’s Playhouse Raleigh, a non-profit organization that provides support, resources, and programs for individuals with Down syndrome and their families. We speak with volunteers and staff to learn more about the impact Gigi’s Playhouse has on the Down syndrome community. Additionally, we sit down with Michelle and Matthew Schwab, advocates for Down syndrome, to discuss a range of topics related to raising a child with Down syndrome, including medical care, education, and social interactions. Join us for an informative and inspiring conversation about the beauty of Down syndrome and the importance of building a supportive community.
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Episode #56: Building a Supportive Community
for Individuals with Down Syndrome
(Recorded March 22, 2023)
Voice of Tonya Wollum, the host of the Water Prairie Chronicles: Welcome to today’s episode of the Water Prairie Chronicles! We have an exciting show for you today as we take a tour of the new location for Gigi’s Playhouse Raleigh and sit down with Michelle and Matthew Schwab to discuss Down syndrome. They’ll share their personal experiences and insights, and help us understand the unique challenges and joys of raising a child with Down syndrome.
From medical care to education to social interactions, we’ll cover a wide range of topics in our conversation. Michelle and Matthew have a wealth of knowledge and experience to share, and we’re honored to have them on our show.
Gigi’s Playhouse is a non-profit organization that provides support, resources, and programs for individuals with Down syndrome and their families. The new facility for Gigi’s Playhouse Raleigh is truly impressive, and we’re excited to take you on a tour to show you what they have to offer.
So sit back, relax, and join us for this informative and inspiring episode as we explore Gigi’s Playhouse Raleigh and learn from the Schwabs about the beauty of Down syndrome.
This is our first interview on the topic of Down syndrome, and we were able to sit down with Michelle and Matthew after our tour to ask a few questions and to help us understand it better. Out of respect for those that I am speaking with, I like to find out how we should refer to different disabilities and special needs. So I started out by asking what terminology I should use when I refer to someone with Down syndrome.
Tonya: I want our listeners to know, as they’re meeting friends in the community, what is the most respectful way to refer to someone with Down syndrome? Um, and I’ve seen it written different ways. It’s “Down” and not “Downs”. Is that correct?
Michelle: That’s correct.
Tonya: So, there’s no “s” on the “Down” that. And is the “D” is capitalized and “syndrome” is lowercase?
Tonya: And why is that?
Michelle: The only, it is in typical, if you are doing a, um, if it’s on a sign or something like that, like Down Syndrome Achievement Center.
Michelle: They would all be the D title capitalized. But if you’re talking about it, cuz Down is the man’s name who discovered it.
Matthew: John Langdon Down. In like the 1800s.
Tonya: Oh, wow. I was wondering how, how, how long it had been an official diagnosis. So it’s been a long time.
Michelle: That’s right.
We continued the conversation by talking about some of the common characteristics of Down syndrome.
Matthew: Yes. Down Syndrome is a, the, um,
Michelle: the most common,
Matthew: the most common genetic disability,
Michelle: let’s say condition. The most common genetic condition.
Matthew: The most common genetic condition is one of the ones in the Intellectual Developmental Disabilities Spectrum of disabilities because it only mainly affects the mentality.
Michelle: There is always some kind of cognitive impairment. Right? What are some of the other, um, markers?
so we have shorter statures, wider hands. And small ears.
Matthew: Almond shaped eyes.
Matthew: Heart defects for. Some or
Michelle: about 50%.
Matthew: About 50% of those with Down syndrome have have those. And there are three types of Down syndrome.
There’s mosaicism and translocation, which are the least common of the types, and there’s the most common one, which, which I have is trisomy 21. And that’s why March 21st is significant and October because of 3, 3/21. And, and Down syndrome-related companies, or not have any sessions, but celebrate that World Down Syndrome day in, in, in October
Michelle: So the, then the three, so probably 95% of people who are Down syndrome have Trisomy 21.
Michelle: It’s just a fluke. It just happens.
Tonya: And that’s the only one that I’ve heard of, so. So the first thing you mentioned,
Michelle: almost everybody,
Matthew: But for short it’s mosaic.
Tonya: Okay. And then what was the second one?
Matthew: Translocation. And those two are the least common of the types.
Michelle: They’re a couple of percentage. And, um, mo, so mosaic Down syndrome is when not all of your, um, genes have the extra chromosome. Could be any, could be 5% of them, 10% so can’t have any time during. So depending on when your, your cells are splitting, they wouldn’t all have it.
Michelle: It’s interesting because there are, I know I, I mean, I don’t know this know this, but I do know this, know this, that there are people walking around who have it, who don’t know, who’ve never been diagnosed. They have to be.
Tonya: Well, because you would have features would not be the same.
Michelle: That’s correct. Not what, that’s correct.
And we know with you and, um, their, you know, abilities typically, they have some different abilities. They’re, yeah. Maybe not as, You wouldn’t know, right. Sometimes true. Um, and then translocation, if I remember correctly, it is, it comes from a parent, it comes from, it’s inherited somehow.
Tonya: So there is a genetic factor.
Michelle: Yep. also. Very, very rare.
Tonya: Okay. And then, so tri,
Matthew: Trisomy 21,
Tonya: Trisomy 21, right?
Tonya: Okay. We’ll make sure. And Link this, so make sure that I print it right and
Michelle: it really is almost everybody.
Tonya: Okay. And that’s, that’s where it’s the 21st chromosome.
Tonya: Is that right?
Michelle: Mm-hmm. Which is what Extra copy,
Matthew: the third copy of, of chromosome 21. Because, and, and, and typ neurotypical people like my mom, they only have. Two copies of, of code, one
Michelle: of all of them,
Matthew: of, of all them. And then, and then there’s, um, and then there’s with Trisomy 21 Down syndrome, where, where the, the two copies of Trisomy 21 makes. Makes another copy.
Matthew: It’s a third. Oh,
Michelle: that’s the Lucky Few we have.
Tonya: And what, do you know what the estimated percentage of the population is?
Michelle: You know, I do know that somewhere
Matthew: I think Down syndrome is probably, if not one of the largest, min largest ones in the, in the disability realm.
Michelle: I know you can find that statistic. Cause I have seen it somewhere, not pretty recently and I can’t remember what it was. I, um, I don’t, the number’s probably not huge. Um, there’s 700. 1 out of 700 kids are born a year with Down Syndrome In the US And I would this to, there, there would be a whole lot more if people were not prenatally diagnosed.
Tonya: Right. Right.
I asked Michelle what she could tell us about early testing during pregnancy and if a diagnosis happens at birth or sometime later when prenatal testing doesn’t indicate a child might have Down syndrome.
Tonya: Well, and that, and that was what I wanted to ask too. So diagnosis. I know from when I was pregnant, we were given the options for different testing and we opted not to, cuz to us that wasn’t an issue. Um, the risk to us was greater than,
Tonya: we were going to meet our child when we met our child.
Tonya: But, um, but for those who don’t do the testing like us, um, are, is it obvious at birth or do doctors know what they’re looking for right away?
Michelle: In my experience I have, I’ve actually known a few, probably fewer than five people in the last 25 years who went home with their baby and had no idea until weeks, or sometimes, months later, but it’s pretty rare.
I mean, it’s pretty obvious. We didn’t know. He was my first, we didn’t know before he was born. We thought he was, let me tell this story cuz I was the one who was aware and cognizant you were, you know, a little floppy thing. Right. Um, but all it’s funny because all of the markers, the low tone, he, he was like a Raggedy Ann doll.
Michelle: Um, he, and we commented on his teeny tiny fingers with his teeny tiny ears and look at this little gap between his toes. And he was floppy like a Raggedy Ann doll, all markers. And I, here I am going, oh, look how cute this is.
Michelle: and then four hours later the doctor comes in and goes, you know, we think he has Down syndrome. So, and I, I had the AFP, you know, that original, the blood test or whatever it was,
Michelle: and it was normal. But that happens all the time.
Tonya: And so ultrasound part
Michelle: didn’t show anything.
Tonya: No problem.
Michelle: If you look back at it now, knowing you could go, oh yeah, you know, maybe they. Called this one, but
Tonya: I, I think a lot of us as moms, we see things later. It’s like, well, we, the signs were there, but we didn’t know what we were looking at.
Michelle: Correct. And so we didn’t do any further testing. We, I have two other boys, and we were like, you know, it is what it is.
Michelle: And clearly the testing isn’t necessarily right.
I’ve heard parents of children with Down syndrome refer to their children as the “Lucky Few” and wondered why the term is used. I found out as Matthew shared some statistics with me. Contrary to what I had been told when I was expecting my own children, Down syndrome doesn’t seem to be much more of a risk for older mothers than it is for younger mothers.
Matthew: I believe there’s a statistic that says like, like 51% is more probable of 51% of, of individuals with with Down syndrome are born to two parents under the age of 35. So it’s more probable. From that, that, that way. But aside from that,
Michelle: well, yes, it, it, you know, you always heard it’s old, old moms,
Michelle: Have the kids. But it’s really not true when you factor in that more women below that are younger women are having the babies. So it’s, that’s not, one of the factors anymore.
One of the challenges I’ve had in coming up with a slogan for the podcast has been whether to use the term disability or special needs, and each time I ask for input I get an equal number of responses in favor of both of them. The same question comes up when we ask about “person first” language or “disability first” language. Michelle commented on the topic, and I was glad she had done so.
Michelle: The one thing that, um, when you were talking about the, using the proper terminology, the one thing that you’re already naturally doing is using people first language, a person with Down syndrome instead of a Downs man.
Or, um, so that’s, that’s the one thing having the, the child right. We don’t get, I mean, personally, our family uses it as a teachable moment. Right. I don’t, it’s a, it’s a word what, you know, if you goof, if you, it’s, I feel like most people are not intentionally malicious or I think you’re right on that.
They just don’t know. You don’t know what you don’t know.
Tonya: But I figured if we can, if we can address it openly with this,
Michelle: For sure.
Tonya: Hopefully a parent who is in uh, an emotional moment isn’t having to now explain it That’s right. To someone else who, who cares about them, but doesn’t know that what the words are saying is hurting.
Yep. And um, so yes, um, I’ve also found that the word, the terms, I saw that you were correcting him when he was using disability. So, um, so what is your preference on that?
Michelle: Well, it is it, for us personally, I’m okay with the word disability. But somebody saw it in one of his PowerPoints and said, you know, we could use the word condition instead of disability.
I’m like, if that makes you feel better. Right. We can use condition I,
Tonya: I go back and forth between special needs and disabilities. Yep. And depending on who I talk to. Yeah. Um, my kids both are fine with both terms. So are we. It’s, you know, it just, here’s what it is. It, it, it is, and, and you get to the point where it is what it is.
We are who we are. Um, we can get stuck here or we can move on to, to whatever’s next.
Michelle: Just be nice to my kid.
Michelle: And have high expectations.
Tonya: And, and awareness is a big piece of it. And I feel like that’s what a lot of these conversations will do is, I mean, like, so for me personally, I’m learning as we’re talking here.
Um, it’s not that I don’t wanna know, I just haven’t had the opportunity to have this kind of conversation before. So I appreciate that.
Michelle: And, and most people are, myself included, you’re, you’re nervous to ask the question, right? So you don’t want to offend somebody by asking the question. So then you just
don’t learn and you don’t know
Tonya: when you, you had made the comment, well actually you, you had made the comment that, that, that with, with Down syndrome, you have it on, on, on, on your face.
Mm-hmm. So it, it’s a identifiable. Um, but you know, do you find that people want to avoid you and not not engage? Do they come and just ask questions or do they, does it even an issue? Do they just. You’re meeting someone, you’re meeting someone, they, they don’t bring it up at all.
Matthew: I mean, there have been times in, when I was younger when they do talk to, to me like, like I was a kid.
But, but, but now, I mean, they, they don’t do that, but they kind almost do that in, in, in a way where, Where I, I’m not completely treat, treated that, that way.
Michelle: For example, sometimes if we go somewhere, if we are at the doctor’s office or something, they will automatically look to me and you know, and so I just turn to him, he’s perfectly capable of answering his own questions and doing all of that stuff.
So I, is that what you’re talking about, that kind of thing?
Matthew: Yes. It’s more like the social. Interactions and, and, and, and little bit of, of the, the workplace interactions because there’s prejudice of employers either because they, they know of, of what Down Syndrome is, but they’re too nervous to know what it is
The next questions I had were about medical care. I wondered what some of the medical care needs might be for a child with Down syndrome. Matthew started by explaining that some might have a heart defect.
Tonya: Is it a defect?.
Michelle: Yeah, and it’s a couple of different ones.
We didn’t, he didn’t have it, so I’m not very well versed in that. But, um, they almost about 50% have some heart defect. Okay. Um, I would, the number’s gotta be huge that have surgery and are fine. Right. Um, I know a couple of you are a pacemaker, but honestly they do the surgery and they’re fine.
Tonya: Is it, do you know if it’s usually a one-and-done. Or is it like a repeated, as a,
Michelle: I believe it’s a one and done.
Matthew: in another field of medical assistance is, is orthopedics and, and, and all because, because naturally we don’t. Um, defined muscles in, in our body and
Michelle: not quite, not quite,
Matthew: I mean, not, not, I mean, but we do have a lot of muscle loose ligaments, so, so that’s why we go to an orthopedist and an orthotist where our, some of us with Down syndrome have. coordination and, and these are AFOs like, orthotics And, and pediatricians definitely. Right. General practitioners.
Tonya: Right. So your specialists would be more the orthopedic doctor that you’re working with? Yes. Pediatrician was
Michelle: often vision problems or vision. Um, Yes, he had, he should wear hearing aids because he’s had fluid in his ears because the ear canals are really tiny.
So that’s sometimes an issue. Um, I don’t know. Feeding because of the low tone is sometimes a,
Tonya: I wondered about that.
Michelle: A, a challenge. Breastfeeding, sometimes a challenge. They can do it, but sometimes a challenge. Um,
Tonya: so the, so the low, the low muscle tone is, is a condition that’s there from the beginning, but with therapy and with exercise. Does the muscle tone
Michelle: No it’s always, it’s always low, it’s always, and it’s a resting muscle tone. Like he can build, he has muscles, he can do this, and he’s got guns. Right. So when his muscles are active, they’re fine. It’s the resting muscles just kind of ???, they just,
Tonya: so your joint stability would be affected.
Michelle: It, it is. And but again, it’s a range just like with everybody else, just like with the cognitive ability there is, I mean, it’s just like in the typical population, cognitive wise, right? All the way from. Yep. Whatever. Two. All the way up,
Tonya: we have an an aver average for a reason.
Michelle: That’s right. That’s right. And it’s the same exact thing. Just shifted. Okay. In the Down syndrome.
Since Matthew was open to sharing information with me, I asked him about his experience growing up. We were talking about cognitive growth, and I asked if he had needed more time to reach some of the milestones growing up. He and Michelle chimed in to help me understand what Matthew’s path has been.
Tonya: And with that shift, talking about the cognitive, um, abilities here. So you’re carrying on a full conversation here? No, no. Deficit size.
Matthew: No deficit at all..
Tonya: Are there delays though, as far as, did, did it take you longer to reach some of those milestones as every child?
Michelle: Every single one.
Tonya: did it take you longer to get to the point where you were reading independently.
Michelle: Do you know the answer?
Matthew: The only only part that I do know is that, that my mom, when my mom first told me I had Down Syndrome and I was in first grade and, and she had me repeat first grade only. Only once. So I wasn’t graduate in 16 cla in 2016. But me being held back, I graduated a year later in 2017.
Tonya: So spending some, some extra time in those foundational Yes. To get Okay.
Michelle: There was, I, I would say second kid, and I knew what the progression should be, right. But he was, I would say that that reading was his strength. Okay. Um, so he excelled at it. Um, and so it was definitely, it was not as big a deficit for him as some other things were.
Gross motor was a much bigger deficit for him. Okay. Um, probably because of, I mean, he was very, He was very late, even in the Down syndrome community. He was very late to walk.
Tonya: Cause I knew crawling and walking is delayed and for, for the majority of the kids.
Michelle: Yep. Almost everything is delayed.
Tonya: So it’s not that you’re not going to get there, it’s just gonna take longer to get there.
Michelle: Right. For most, for most things. Correct. And hold on. What, what?
Matthew: I was gonna say even delay in, in speech. Like I, right. I did sign, sign language. Okay. Until I was two years old and then two years old, I started talking
Matthew: Okay. Oh, five years old.
Michelle: I knew what He knew you. I, so it helped me. True. Um, and it was, and it was cool. We didn’t do any, um, we didn’t do asl. We didn’t sign exact English, so it was just a pro. They were, they had sign ideas, sign did that kind of thing. We. His sign for my mother was this cuz she had curly hair.
Okay, we took it and ran. Whatever. We’ll take it. He uses it consistent. Right. He was talking to us.
Tonya: The, the idea was communication.
Michelle: That’s right. And so he, and as he learned words, he, this, the sign he left, he gave up the signs.
Before we finished, I wanted to make sure I asked about new parents who want to get connected with Gigi’s Playhouse.
Matthew: go to gigisplayhouse.org, which is the main website. And, and, and then there’s a part on the national website. They can look at.
Matthew: locations across the country, how to start one, and existing ones. So, and, and they go to an existing one, like for example, Charlotte,
Michelle: just for their look at the list of existing playhouses?
Matthew: Yes. And, and then
Tonya: So there is a directory there?
Michelle: There is.
Tonya: Okay, good.
Matthew: And then they can go on on there and see what that Playhouse offers.
Tonya: Excellent. And do you have any advice for. Parents
Michelle: for new parents?
Tonya: For new parents,
Michelle: um, your baby is a baby first, and that’s really, I, that’s the best piece of advice is just treat ’em like, treat ’em like a baby, love them and manage, find the resources as you as you need them.
Tonya: Excellent, excellent. Top of Form
As we wrap up this podcast episode, Steve and I want to express our gratitude for the opportunity to learn about the incredible work being done by Gigi’s Playhouse for the Down syndrome community. We were truly impressed by their dedication and support for individuals and families, and we encourage everyone to check out gigisplayhouse.org to see how you can get involved.
Even if there isn’t a Gigi’s Playhouse location in your area, they offer online options for connection and support. By supporting Gigi’s Playhouse, you can make a meaningful impact in the lives of individuals with Down syndrome.
We also want to thank Matthew and Michelle Schwab for sharing their experiences and insights with us. We learned so much and are grateful for their willingness to be a part of this episode. For those of you who want to learn more about Matthew, we’ll include his contact information in the show notes.
And if you’re listening to this on the audio platform, we encourage you to check out our video on YouTube, where you can see a tour of Gigi’s Playhouse Raleigh. Thank you for joining us today, and we’ll see you on the next episode!