WKCR: The Wisdom of Down Syndrome
The Wisdom of Down Syndrome was the first of a four-part, summer-long series of multiple-part episodes of The Best Medicine on WKCR-FM. The Best Medicine was a radio show and podcast that uses story-telling to shed light on medicine through a new prism. The show considers medical conditions not only as biological science, but as a shared human experience, a source of compassion, and a well of hope. The Best Medicine was a production of WKCR 89.9 FM and WKCR HD-1, Columbia University in the City of New York.
Society is increasingly providing, to individuals with Down Syndrome, resources tailored to enrich their lives. As this happens, we all learn lessons about accomplishment, ability, compassion, and what makes every human valuable. Researchers, meanwhile, are finding new ways not only to help Down Syndrome patients achieve their dreams, but are also discovering special skills — such as non-verbal communication and unique kinds of emotional awareness — which the condition seems to engender. We speak with a leading advocate, a neuroscientist, and a mother and her daughter with Down Syndrome, about the insights of this sometimes beautiful, sometimes challenging, medical condition.
Campano: I’m Erik Campano. Today: The Wisdom of Down Syndrome Part I. Individuals with the genetic condition known as Down Syndrome may have what are traditionally considered intellectual impairments, but thanks to increasing social support, they’re achieving successes that seemed impossible for them even a few decades ago.
Tracy Nixon: Laura believes that every encounter that she has with someone is going to be OK. It’s going to be positive. She gives everyone the benefit of the doubt from the beginning, and I definitely don’t do that.
What I’m saying is that you like everybody.
Laura Lyle: That’s right, Mom.
Campano: We’ll speak with mother and advocate Tracy Nixon and her 11-year old daughter Laura Lyle, who has Down Syndrome, as well Britt Sady, Executive Director of Down Syndrome Achievement Center Gigi’s Playhouse New York City. This is The Best Medicine. Stay with us.
Campano: I’m Erik Campano. Today, we’ll speak with Britt Sady, Executive Director of Down Syndrome Achievement Center Gigi’s Playhouse New York City, and mother and advocate Tracy Nixon, and her 11-year old daughter Laura Lyle, who has Down Syndrome. From WKCR 89.9 FM and WKCR HD-1 Columbia University, this is The Best Medicine: Healthcare and humanity, one story at a time, a radio show and podcast that uses storytelling to shed light on medical conditions through a new prism: not only as biological science, but as a shared human experience, a source of compassion, and a well of hope. Now: The Wisdom of Down Syndrome, Part I. Down Syndrome is a genetic condition, also known as Trisomy 21, which is caused by the presence of all or part of a third copy of the 21st chromosome. Individuals with Down Syndrome typically have what are traditionally considered intellectual impairments, as well as physical growth delays and characteristic facial features. But nowadays, as Down Syndrome individuals are getting more social support, certain unique emotional and social talents are becoming more apparent. Britt Sady is both the mother of Noah, a child with Down Syndrome and the head of Gigi’s Playhouse New York City, a community and education center specifically designed to celebrate and support individuals with Down Syndrome. We had the chance to speak with her at the WKCR studios.
Campano: One of the key difficult human and philosophical issues about Down Syndrome is the question of, when we’re treating it, we can improve cognition with, for example medication, but how desirable is that, from the perspective of someone who works with people with Down Syndrome?
Britt Sady: Cognitive research?
Sady: I think there are some people that are very happy with anything that would improve the quality of a life, and I think there are other people, whose perspecive I personally don’t understand, who feel like you’re actually perhaps playing a role you shouldn’t play, and you’re messing with what is fundamentally human. And in my mind, I think the brain is an organ, just like the heart or the liver or the spleen, and if we can develop remedies to make it function just a little bit better, why wouldn’t we?
My son — I have a five-year-old son with Down Syndrome, and that does not define him — so if we did something to change the way Down Syndrome functions in his life, well, that’s like one little tiny piece of him. It’s like if he broke his arm. Is he broken? No, his arm is broken, because my son is not Down Syndrome. He has Down Syndrome, and there’s a huge difference.
Campano: One of the questions that Down Syndrome opens for people is, what makes life valuable, and so some parents, when they are faced with the possibility that their child might have Down, they say oh no, this kid will never grow up to be a doctor or a lawyer…
Campano: …and for some parents, that’s a source of some kind of cognitive dissonance, right?
Campano: But life is about more than what we accomplish professionally, and people who work with individuals with Down Syndrome become acutely aware of the value of life besides ability.
Sady: You now, people who get drawn into Down Syndrome, and it’s kind of an addiction, and for those out there in the listening audience who don’t know this, you’re going to think I’m on drugs for a second here, and in fact, I have, I drank the tea, but you would too, if you had this exposure, because people with Down Syndrome, just, they just function differently. They see life from a different perspective, and when you look at life from their perspective, it’s quite beautiful. You suddenly have to question the whole paradigm of how you value life. We equate completely, on par, smart is good. Stupid is bad. Rich is kind of good, but it comes along with problems, but intellect — it’s the air we breathe. We don’t question it.
To stop and question, well Noah, some people are going to say that he’s stupid, and why is that necessarily an insult? Why is it bad? And you really have to fundamentally go, what — what is it to walk into a room, and actually contribute? What do we really want? And I started to have to really question this, not like, as a passing, hmm-mm, I really have to really think about this for a minute, or I’m taking a writing class. He’s right there. He’s in my life. He’s in my arms. He’s never leaving. He’s part of my genetic structure. He’s an extension of who I am as a human, so I can never leave this conversation behind.
Fundamentally, I want to produce another life form that when they walk into the room, people go, ahh… I’m glad you’re here. So, Noah is the most beloved human being I have ever come into contact with. People stop me on the street to say — people I don’t know — you’re kid’s amazing. No, I mean it, he’s amazing. Because he —
I don’t know what it is about Down Syndrome — but they see life differently. They perceive life different — and I think humans, like neurotypical people, are not intimidated by them. Therefore, they connect with them in a whole different way, and the emotions that are exchanged are without the sort of limitations that we set up when we presume that the person will be critical.
Which isn’t to say that Noah isn’t, or other individuals with Down Syndrome aren’t, they actually are. They’re critical, they get angry, they have opinions, there’s people they like and don’t like, but since that’s not generally known, people come at a relationship with someone with Down Syndrome without any sort of protective barrier up, and therefore the connection they make is deeply fulfilling and rewarding in a way that only someone that you are, like, romantically in love with and trust, or you’re their parent or something — so it breaks down a lot of social barriers that are uncomfortable or that we are unaware of, and it gives you a very, very rich and moving relationship, simply because of some of the prejudices, and some of the realities, about Down Syndrome.
Campano: Why is this Kool-Aid?
Sady: Why is it drinking the punch?
Campano: Or tea, or whatever you said.
Sady: Well, it’s because — I was a doula, so I walked many women through this possibility that a child might have Down Syndrome so what do they do, and I had to think about it a lot, and I basically had decided that I would have a child with Down Syndrome. I was influenced by people like Maya Angelou, who had chosen to have a birth even though one would think it would have ruined her career and everything, and I had this idea that life isn’t what comes at you. It’s what you make of it, but I definitely was absolutely certain that Down Syndrome was a huge deficit. I imagined an obese person who couldn’t actually communicate. The only reason that anyone interacted with them was out of pity, but because of this other philosophical belief that I had, I knew that I would accept that, and it would be some sort of interesting journey that otherwise wouldn’t have happened to me.
So, when I am actually holding a baby with Down Syndrome — my heart dropped. I thought that he would be that obese kid in a church basement that only the minister and the church volunteers paid attention to out of pity, and I loved him, and I thought I would be ostracized as well. I didn’t know what to do with my life, but that wasn’t going to affect my choice. I though, OK, now how do I make it through life as an outcast who was pitied, and I had a social worker tell me, as if it was fact, “well everyone will pity you, everywhere you go”. We were actually waiting for an elevator with a bunch of other people, and she said, “you know those people who are looking at your baby? They were pitying you”, and I didn’t perceive that. I was like, uh, that’s your perception, you think it’s fact. I didn’t even question her, because it was so bizarre.
Campano: Do you think it’s true now?
Sady: No, I don’t. I don’t at all.
Campano: Can you think of what they were thinking? Or was that just…
Sady: I think they thought he was a really cute, tiny little baby. I really do. I thought it then. I think it now, and I think the reason she thought that is because she came from a certain generation. She had just enough information to be dangerous. She was considerably older, and I think that generation, Down Syndrome was different.
Campano: So, there’s a generational shift.
Sady: Oh, yes.
Campano: When did that occur?
Sady: Well I know that 40 years ago, your doctor would tell you, and therefore it would be medical fact, that your child would not walk, would not talk, and would not recognize you as their parents. Therefore, the best thing you could do — even if you think you could handle it — proper thing for you to do, from a medical perspective, is to put this child into an institution, tell the rest of your family he died in childbirth, and go have another baby, and families routinely did that. Therefore, what the doctor had said was medical fact, became self-fulfilling prophecy. Institutions were filled with mistreated people who did exactly what the doctors said they would do.
This is the Best Medicine on WKCR. Britt Sady is a mother of a child with Down Syndrome, as well as Executive Director of Gigi’s Playhouse New York City, a Down Syndrome achievement center.
Campano: What’s interesting in watching you speak about Down Syndrome is you are showing me a lot of hand gestures and Down Syndrome individuals use non-verbal communication —
Sady: — sign language —
Campano: — in a different way than —
Sady: — it’s because low muscle tone is a problem, and individuals with Down Syndrome tend to be individual learners. Right? Secondly, I may well, if I have Down Syndrome, have a larger tongue and a smaller jaw. I had a very hard time learning to type. It made me sick to my stomach, and I think that that’s what it’s like for Noah, my son, and other individuals with Down Syndrome to learn to talk. Right? Not only is the muscle coordination so complex — imagine are you learning to tap dance, or play a guitar, something that requires, first for you to build up a muscle you don’t have, and then use it so succintly, under a social pressure that’s enormous — you know, you only have one opportunity, you’re learning a foreign language. When I learned French my mouth hurt, and I’d be following the conversation, and I’d have this funny joke, but I wouldn’t be able to produce it until five minutes later and then the moment was gone.
So, it’s very hard for individuals with Down Syndrome to talk. It’s a very hard thing, but we know that we really need children to ask for help and communicate at a much earlier age, or they are now triply delayed. So, if you can teach someone that this means help — I’m putting my flat hand and my thumb pointed up, and I’m making an upward gesture — this is very easy to do, and know I know, you wanted help. “What do you want help for?”
The first sign my son learned was more, and it was like Helen Keller learning water. The world opened up to him, because all he had to do was go more, and I was going to say, “more what? Do you want more of this? Do you want more food? Do you want more sunshine?” So, he just started going more, more, more of everything, and he learned a zillion more signs.
Campano: What do Down Syndrome individuals have to teach us, the broader community, about non-verbal communication?
Sady: Mmm… well, you know, sign language is a very intimate thing. I could say to you, “hey, I’m sorry.” Or, I could do this.
Campano: Right now, you’re —
Sady: I’m rubbing my heart in circles, but I have to have your eyes. I have to stop what I’m doing, get your attention, make sure you understood my intention, because words — I don’t believe we actually do primarily communicate with words, but then words are this shortcut that we use all the time and we misunderstand each other like crazy and that’s probably what’s wrong with the world, fundamentally. Right? [laughter]
Campano: Is that visceralness to the communication part of why people feel so much joy when interacting with Down Syndrome individuals, frequently?
Sady: I haven’t thought about that, but very likely. Because I know that Down Syndrome is hard for him to have, I would take it away, but it would be very hard to sacrifice what it has given my family, because the gift that it has given my family has been profound.
Campano: Profound what?
Sady: Profoundly beautiful. I’ve realized that someone being smart is not the only quality I want be with, and it’s not even the most important quality. In fact, being smart will get you somewhere, but being kind, being patient, being creative, being positive, I would trade in smart for all these other things 95 percent of the time. There’s times when I need someone smart. I don’t want you doing surgery on me unless you’re very smart.
There’s certain points where we really need smart, but for most of the tasks of life, smart is not the primary thing we need. It’s other things. I was in a marriage that involved domestic violence. I’ve had that. My son is more aggressive than I want him to be because he’s seen that, and he has that in his life. The relationship that he has with people with special needs brings out a kind of kindness in him that makes me absolutely confident in a man he will become. Because of that he has a friend on the autism spectrum, he has numerous friends with Down Syndrome who are ages three to 50, he has a friend who is really struggling to beat cancer, and because when I had a child with Down Syndrome, I started saying hello to people who are obviously struggling, I walked out of my way to say to someone in a wheelchair “hey, how are you? It’s a beautiful day.” Whereas I think there’s an invisble wall around these people, because we’re told not to stare, but by not staring, we actually ostracize them, and just walking up and saying “hey, how are you” — it felt awkward because there was this glass wall around the person but when I passed through the glass wall and said, “hi”, they were like “hi!” And then all of a sudden we’re talking every single day.
So, we now live in a world of disability, and we see it all over the place, and that has had a profoundly positive impact on my eight-year-old son, because it brings out a whole different part of his personality.
Campano: So, our listeners might be asking themselves, at this point, how should I comport myself around a Down Syndrome individual. Do I treat them just a I would treat another person? Do I intentionally try to break that glass wall, or —
Sady: — and if you say the wrong thing, are you going to get your hand slapped? I mean, when someone said, “oh, luck you, your baby’s going to be a baby forever”, and I was like, “aargh” [laughter], because people well-intentioned to say things that do hurt, and I’ll tell you, first of all, I would hope that anyone who has a child with Down Syndrome, believe it or not, is proud of that child, and that’s something for you to know when you interact with them. It’s not something they’re trying to keep secret. I would say, definitely say hi. Say, “you’re baby’s beautiful. I like the shirt he’s wearing.”
Talk to them just the way you would talk to anybody else. It’s really important, and I really get why people are afraid to do it, because we’ve all been taught not to. It’s not your business. Because you think it’s something shameful. That’s why. You don’t do it because you think it’s something shameful, and if you could process in your own head that maybe it’s not shameful, kids just grow in all kinds of different ways, and this is one of the ways that nature produces children, then I would say walk up and say “hi”. “Where does your kid go to school? How ya’ doin’? Do you think it’s a beautiful day?” Break through that barrier, and have a conversation.
Campano: I’m Erik Campano and this is The Best Medicine from WKCR Columbia University. Today: The Wisdom of Down Syndrome, Part I. We’ll speak now with 11-year-old Laura Lyle and her mother, Tracy Nixon. Laura has Down Syndrome, a genetic condition characterized by, among other things, what are traditionally seen as intellectual impairments.
Lyle: Every Saturday I have Playhouse Pals.
Campano: What’s Playhouse Pals?
Lyle: Well, Playhouse Pals is where kids come in with a certain disability called Down Syndrome. Now, Down Sydrome is something that kids have — I don’t know how to explain it — but I know that some kids have Down Syndrome and some kids have autism.
Campano: So, what do you do during Playhouse Plays?
Lyle: What I do at Playhouse Pals — I’m doing theater and acting. I do a lot of different activities. I do track now, and track is all about running, and I get really tired. [laughter]
Campano: Do you run short distances or long distances?
Lyle: Long distance. Today I’m going to be running in a meet. This Monday, I’m going to run the 200 meter.
Nixon: Kinda’ short.
Campano: That is kinda’ short, but it’s medium distance.
Nixon: I think for her it’s short.
Lyle: I’m actually doing the 400, and my friend is doing the 800.
Nixon: Why don’t you talk about some of the other things that you do, your activities?
Lyle: I also do math. So, math is very, very — not just very — but very, very, very challenging. Some of the good things are doubles facts, stuff like that. It’s pretty cool.
Campano: What’s “doubles facts”?
Nixon: She’s talking about math.
Campano: Oh. Certain kinds of math you like.
Lyle: I love double facts. It’s way more easier than more challenging things. Believe me. I suffer through that case a lot of times.
Nixon: Aside from math, what other fun things do you do?
Lyle: I also go to school.
Campano: So you do other subjects in school, too.
Campano: For example?
Lyle: We do science. We’re learning about ecosystems, and we are also learning their community and their population, and how all the different animals come together, like a desert. A desert is an ecosystem. A population might be cacti, or cactus, or a jackrabbit, and the community is a big desert itself, and then, different animals come in, like cacti, and maybe even an [inaudible], but I don’t know: do scorpions live in the desert?
Campano: I think sometimes scorpions live in the desert. Yeah.
Lyle: That’s one basic thing that we’re learning in science.
Campano: Right now.
Lyle: Right now. At school right now, we always have this website. It’s called “The Vocabulary”. We’re looking at the 18 years of rap.
Campano: Of rap?
Lyle: Of rap.
Lyle: I know. Cool, huh?
Campano: What would you like to do when you grow up?
Lyle: I want to be a babysitter.
Campano: Huh. Why?
Lyle: Because I’ve been really good with kids, and I’ve been thinking to myself, wow, this is a lot of good work.
Campano: And you have friends at Gigi’s Playhouse.
Campano: And do you have friends at school?
Campano: And have they ever met each other?
Nixon: Well, you say that, but they’ve met at the Buddy Walk. The Down Syndrome Society Buddy Walk.
Lyle: There’s this new big thing called a Buddy Walk, and guess who just got her very first fan club. The Laura Lyle fan club.
Campano: No kidding.
Lyle: Yes kidding.
Campano: And who’s in the fan club? Your fans.
Lyle: Of course my fans. My mother is in my fan club, my father is in the fan club, and of course my two cousins, Nicholas and Sophia.
Nixon: Don’t forget about your brother.
Lyle: And my brother. At the Buddy Walk, we all meet at my house, and we have this ginormous feast. It’s not just big. It’s not just very, very, very big. It’s hunormous.
Lyle: Wow is right.
Campano: What did you eat?
Lyle: We had turkey. We had meatballs. We even had ribs.
Campano: Wow. Yum. I hope you had some vegetables, too.
Lyle: Of course.
Campano: Good. And what about your friends at school?
Lyle: Well, I have lots of friends. We do lots of things. When we were younger, we shared food, which the school did not approve, because I was asking her to share some of her Ruffles with me. And —
Lyle: It’s a type of chip. So, we usually would sneak food under the table so the teachers would not catch us. [laughter]
Campano: Great. Did you ever get caught?
Lyle: No. Because always, the food is under the table. [laughter]
Campano: This is the Best Medicine. I’m Erik Campano. Today: The Wisdom of Down Syndrome, Part I. We’re speaking with mother and advocate Tracy Nixon, and her 11-year old daughter, Laura Lyle, who has Down Syndrome, and attends a Down Syndrome achievement center in New York, called Gigi’s Playhouse.
Campano: Laura, do you do activities with your mom when you’re at Gigi’s?
Lyle: Well, sometimes my mother is not around. But I do do a lot of good stuff with her.
Nixon: What’s nice about the Playhouse is that you can find the programs or activities that you like, or that fit your time frame, or fit your family, and participate that way.
Campano: Also, I saw that you were dancing, Laura, while your mom was talking about it.
Nixon: Yes, we dance a lot.
Campano: You dance a lot.
Lyle: Not that much. My mom likes a disco type of person. [laughter]
Nixon: Thank you very much, Laura. You know, when I was trying to figure out as much as I could about Down Syndrome, and just trying to think ahead, and make sure that I was ready for my child to grow up, because she was going to grow up. She wasn’t going to stay a little baby.
Lyle: Of course, Mom. I’m 11.
Nixon: So true, so true, and boy is that old. [laughter] So it dawned on me that probably during the first five, six, seven years of her life that she would be very similar to other kids, but then at some point there would be a parting of the ways. You know, kids get into their teens and they kind of go with their affinity groups and so forth, and I wanted to make sure that my daughter had friends. If that happened in her life, that she always would have a community that would be her friends.
Lyle: I’ll always have friends, Mom.
Nixon: That I know. That I know.
Nixon: You will always have friends.
But, I think that’s largely working out in the way that I had hoped.
Campano: Do you ever talk about Down Syndrome with the other kids at Gigi’s?
Campano: Yeah, or do the kids talk about it amongst themselves?
Lyle: Well, well I think Down Syndrome is — I don’t know for sure. But what I do know is that I originally have a sense of humor on my side. I have a question.
Lyle: So, why doesn’t a leopard or a cheetah want to take a bath with anyone?
Campano: Why doesn’t a leopard or a cheetah want to take a bath with anyone?
Lyle: It doesn’t want to come out spotless. [laughter]
Campano: That’s good.
Nixon: You know, we talk about Down Syndrome at home. We always have. I can’t say that I’ve spent a lot of time going through details of what Down Syndrome is with Laura. We’ve talked about the fact that it’s a genetic condition, and that it’s something that she was born with. It’s not something that you catch. But what I mainly wanted her to feel comfortable with is that having Down Syndrome is just one part of her. Some people have it, some people don’t, and that’s really what I focus on at this point. There was a time when you were much more inquisitive about Down Syndrome. You wanted to ask a lot of questions.
Lyle: Yes, yes. I get the whole thing now.
Nixon: But, what was asked of was when you’re at Gigi’s, do all the kids with Down Syndrome — do you guys talk about Down Syndrome?
Lyle: No. We are too busy playin’!
Nixon: No. I think Laura has a basic comfort with the fact that she has Down Syndrome. I don’t think that she has a great detailed understanding of what exactly that means. And I’m not sure that she necessarily has to. You know? But, you tell me. I don’t want to put words in your mouth. When you think about Down Syndrome, what does that mean to you?
Lyle: Mom, you just put words into my mouth.
Nixon: I didn’t mean to. I’ll take them back.
Lyle: So I throw them back.
Campano: You just literally took words in and out of each other’s mouths with a hand gesture. [laughter] Our listeners can’t see that, so I have to explain it.
Campano: Do you think they understand what it is, your friends?
Lyle: Well, they understand, but what they don’t understand is that I get mad more than them.
Nixon: I think that’s true. I think that your friends are beginning to realize that one of the things that makes you a little bit different is that you tend to get upset more than they do, or that you get angry faster. Don’t you think?
Lyle: Yes, yes.
Campano: But everybody gets angry sometimes.
Lyle: Everyone does.
Campano: What have you learned from Laura? What has Laura taught you about life?
Nixon: Well, you know, that’s a good question, and I can tell you that pretty quickly. Laura believes that every encounter that she has with someone is going to be OK. It’s going to be positive. She gives everyone the benefit of the doubt from the beginning, and I definitely don’t do that. [laughter] I have my guard up, or I try to size up a situation, and have the approach that I think should be. Whereas, she really does believe that everyone is going to be her friend, or has the potential to be her friend, and it’s really up to that person to prove otherwise, and that’s amazing.
What I’m saying is that you like everybody. You like people, and you want to be their friend, and you always give everybody a chance to be your friend, and that’s really sweet, and that’s why I think you have such lovely friends.
Lyle: That’s right, Mom. [whispers] I have a song about that.
Campano: You have a song about that?
Campano: Do you want to sing it?
Lyle: No. [laughter]
Campano: Laura Lyle actually changed her mind and she did rap for us — and you can hear that rap in Part II of the The Wisdom of Down Syndrome. She and her mother, Tracy Nixon, will speak about the days after Tracy learned that Laura had Down Syndrome. We’ll also talk with leading Down Syndrome researcher, New York University neuroscientist Dr. Stephen Ginsberg, about new treatments for the condition. And we’ll discuss the very difficult question facing a lot of parents who find out, through genetic testing before birth, that their fetus has Down Syndrome: whether to terminate the pregancy.
The conversation continues at thebestmedicineradio.com. You can read a transcript, leave your comments, and learn more about the guests and resources mentioned on this program.
The Producer of the Best Medicine is Linh Tang, the Marketing and Technical Director is Jean Kremer, the Content Editor Evan McWilliams, the theme music composer Tim Hoyt and the graphic designer Gabe DeSanti. I’m Erik Campano.This program was originally broadcast on May 26, 2015. The Best Medicine is a production of WKCR 89.9 FM and WKCR HD-1, Columbia University in the City of New York.
Campano: I’m Erik Campano. Today: The Wisdom of Down Syndrome Part II. Individuals with the genetic condition known as Down Syndrome may typically have what are traditionally considered intellectual impairments, but thanks to increasing social support, they’re achieving successes that seemed impossible for them even a few decades ago. In the meantime, scientists are finding potential new treatments to help improve their cognitive function. But many parents struggle with the question of whether they should terminate a pregnancy after finding out through genetic testing before birth that their child has Down Syndrome.
Ginsberg: Not only do they lead independent lives, they become role models and contributors to society. It’s a thorny issue.
We’ll speak with leading Down Syndrome researcher and New York University neuroscientist Dr. Stephen Ginsberg, as well as mother and advocate Tracy Nixon and her 11-year old daughter Laura Lyle, who has Down Syndrome. This is The Best Medicine. Stay with us.
Campano: I’m Erik Campano. Today, we’ll speak with leading Down Syndrome researcher and New York University neuroscientist Dr. Stephen Ginsberg, and mother and advocate Tracy Nixon, and her 11-year old daughter Laura Lyle, who has Down Syndrome. From WKCR 89.9 FM and WKCR HD-1 Columbia University, this is The Best Medicine: Healthcare and humanity, one story at a time, a radio show and podcast that uses storytelling to shed light on medical conditions through a new prism: not only as biological science, but as a shared human experience, a source of compassion, and a well of hope. Now: The Wisdom of Down Syndrome, Part II. Down Syndrome is a genetic condition, also known as Trisomy 21, which is caused by the presence of all or part of a third copy of the 21st chromosome. Individuals with Down Syndrome typically have what are traditionally considered intellectual impairments, as well as physical growth delays and characteristic facial features. But nowadays, as Down Syndrome individuals are getting more social support, certain unique emotional and social talents are becoming more apparent. Tracy Nixon and Laura Lyle spoke with us at the WKCR studios, and about halfway through the interview Laura, started asking me questions.
Lyle: What is your favorite food?
Lyle: Yes, you.
Lyle: Why pizza?
Campano: Because I am from the city with the greatest pizza in the world.
Lyle: And where is that city.
Campano: That’s in Connecticut.
Campano: Yes. Have you been there?
Lyle: I have. Insanity. [laughter]
Campano: Connecticut’s beautiful. It’s got so many boats and beaches.
Lyle: I’ve actually been to Maine, and I had lobster.
Campano: Oh did you really? Oh my gosh. Did they cook it in front of you? Or did you…
Lyle: We waited.
Nixon: You also went to the tank and looked at the live lobsters that you were going to eat up.
Campano: Did you really? Did you see the lobsters that you ate?
Lyle: Well, no, but we just walked over there and we were looking and looking and looking and the food came.
Nixon: So you didn’t specifically pick out your lobster, and then cook it up, and eat it.
Lyle: No. That would be terrible! [laughter]
Campano: The hardest part about eating lobster is you have to get through the claws.
Lyle: My dad’s a genius. He can even help babies. My dad is also a very amazing man. One time, I helped him make this soup. This man he was nuts and nutso and crazy about, his name is Mario Batali.
Campano: Mario Batali.
Lyle: Yes. Not the Nintendo Wii type of Mario. [laughter]
Campano: You mean, not Mario and Luigi from Super Mario Bros.
Lyle: Right. So then, I tried to improve my cooking skills with my father. We cooked bread. We cooked a big soup, which was minestrone, and I was planning to cook bomboloni.
Nixon: You know, when iPads first came out, one of the food apps that we had was Mario Batali’s cooking app, and both the kids loved this app. And so now, you and your dad do a lot of cooking out of the Mario Batali cooking app.
Lyle: Now, I have Nigella and Gordon Ramsay. They’re both British, and cook some amazing dishes. Nigella, she makes grilled halloumi with oozing egg and mints.
Campano: Wow, that sounds delicious.
Lyle: I want to eat it right now!
Campano: One of the things that you talked about is that when you found out, before Laura was born, that this was trisomy 21 —
Nixon: I did not. I did not find out until she was born.
Campano: Oh, you found out when she was born. But, then you spent six months — now, most new moms don’t sleep anyway —
Nixon: Exactly, exactly.
Campano: — so this isn’t too different from the usual story. But, you spent a lot of time researching it.
Nixon: That’s right.
Campano: Six months.
Campano: Did that all pay off? Did all this intellectual understanding and academic research about the condition of Down Syndrome — how much did that actually contribute, you think. to the way that you interact with her? Or is it much more intuitive? Is it something that we can’t really apply these kind of —
Nixon: First of all, I did not have a prenatal diagnosis, which is very uncommon. Especially now, most women would find out beforehand — I didn’t do any testing whatsoever, because I knew that I wasn’t going to do anything differently with the pregancy. So then, when she was born, yes I did do a lot of research, and I would say that it wasn’t necessarily just six months. You’re constantly doing research. To this day, I’m doing some research. You know, you’re constantly trying to understand, how is this different? What can I do differently? But, in terms of the way that she and I interact, I don’t think so.
Although, that’s not fair. It’s always in the back of your mind. Even though when we’re together I don’t think about it, I don’t constantly go, oh my daughter has Down Syndrome, but I think in the back of my mind, sometimes you say to yourself, oh, that exchange, I’m having difficulty getting something across, should I be thinking about this in terms of Down Syndrome, or should I be thinking about this in terms of a tween who is resistant to hearing what her mother has to say. Do you know what I mean?
So, I think there is always the thought of well, how is Down Syndrome affecting this conversation, or this activity, or whatever. But for the most part, no, I think that she and I interact the way we interact because of our personalities, and it would be like that, even if she didn’t have Down Syndrome.
Campano: This is the Best Medicine on WKCR. I’m Erik Campano. 11-year old Laura Lyle, who has Down Syndrome, had said earlier in the interview that she had a rap to perform, about the subject of families.
Lyle: I just want to say, to all of our fans out there, we love you guys. Thank you for supporting us. We want you guys to have an amazing day. Thank you for having us. We’re so grateful.
I have a little rap that I would like to publish with you guys. So, this song is for family. It’s called, “Love Makes a Family”.
It all starts with love.
Love makes a family of every type.
If you’re a [inaudible] American, you should be really cool.
And I’m awesome and you, too.
My mother and father are the leaders of the family.
They’re really amazing because my brother is just my ecstasy.
Oh! We got cool, we got style. We’ve got cousins of every size.
Little, big, bigger, tall, we got cool, and we’re all
Uncles and aunts, Dad and Uncle Mark,
Maybe if we had them we could really make a spark,
Oh! We are style, family, run by Mom and uncle [inaudible]
We don’t want to make it cool, we just want to make it fun,
We just want a [inaudible]
We don’t want to make it too low, we want to make it fast,
So we can know, blow, blow,
I’m different sounds, different sounds, different sounds,
Love makes a family, love makes it really cool,
Love makes it cool. Love makes it cool.
I’m a fan. I’m a fan. You are, too.
I wouldn’t mind having a private copy because I’m really awesome,
Because I’m a really [inaudible], I’m a little fly and I’m your style,
I’m also a child.
Step back and watch. [applause]
Nixon: I don’t know what to say. [laughter]
Lyle: I’m done with the topping.
Nixon: All done.
Campano: 11-year old Laura Lyle, and her mother and Down Syndrome advocate, Tracy Nixon. This is The Best Medicine from WKCR Columbia University. Today: The Wisdom of Down Syndrome, Part II. Dr. Stephen Ginsberg is on the forefront of study of Down Syndrome. He is a Research Scientist at the Nathan S. Kline Institute for Psychiatric Research and Associate Professor in the Department of Psychiatry, Department of Physiology & Neuroscience at New York University Langone Medical Center. Dr. Ginsberg explained that Down Syndrome may have its unique cognitive and emotional manifestations due to the effects of brain plasticity — changes in neural pathways and synapses due to changes in behavior, environment, neural processes, thinking, and emotions – as well as to changes resulting from physiological problems.
Ginsberg: There’s a term called cognitive reserve. What we think is that traverses of cortex that have circuitry that’s plastic, that can sort of move over into an area or absorb some of the threshold that one needs to function properly, and we think — again, we don’t know for sure — these are what make a normal, healthy human, and that in neurodevelopmental disorders, such as Down Syndrome, such as Autism Spectrum Disorder, that wasn’t developed properly in the first place. The capacity isn’t there necessarily for true plasticity.
Campano: Dr. Stephen Ginsberg told us that one of the more promising treatments for Down Syndrome — which has some similar physiology to Alzheimer’s diesase — includes administering a substance called choline.
Ginsberg: Choline, which is a nutrient, that’s found in things that my mom or your mom told you to eat — it’s in spinach, it’s enriched in fish and proteins and beans — it has multiple roles, and one of them is to help make the lipids and the membranes in your brain.
Campano: To make them?
Ginsberg: Yes, to help synthesize them. It’s a synthetic enzyme. Now, it also is a precursor for a major neurotransmitter, acetylcholine. Also, the cherry on top of the sundae is that it is the number one dietary methyl donor. It changes gene expression by what we call a field called epigenetics. So, we’re thinking from a public health issue, that pregnant moms aren’t getting enough in their diet, and that if we supplement the mother when she’s pregnant, and after, when a baby’s born, if it still receives nutrition from the mother, what we see is benefits in the offspring, in the pups.
Campano: In other words, throughout the course of their life, choline supplementation in utero and then while the mother is breastfeeding can actually, toward the end of their adult lifespan, have some effect on their ability to cognate.
Ginsberg: You’ve hit the nail on the head. So, what it does, is — it’s an organizational change to the brain. Changes in attention, we’re talking about changes in memory, we’re talking about changes in the ability to again, in a mouse model, have an executive function. We have moms that are Down Syndrome-model moms, so they give birth to pups that have Down Syndrome, they also give birth to pups that are normal, so we can compare and contrast them. I think it’s a public health issue that every pregnant mom, particularly those that are at risk for carrying a fetus that has trisomy 21 —
Campano: — Down Syndrome —
Ginsberg: — Down Syndrome — should be increasing their intake of choline. Also, what I would like to see personally, is: as moms and dads are getting older, before they have children, an aged parent has higher risks for developmental disorders than younger parents, I think it’s incumbent upon us to have proper nutrition, proper maintenance, and following of older parents, particularly in well-baby clinics, but particularly in pre-natal clinics. If we know the mom and dad, or both, are older, we should have them in their proper risk category, possibly increasing choline intake from the get-go, in someone that’s older than younger.
Campano: We know that choline supplementation — it seems to be the case that choline supplementation among other species, in mothers, has good long-term cognitive benefits.
Ginsberg: Has the potential for benefits.
Campano: Has the potential for cognitive benefits. Does it cause any other behavioral changes? For example, does it change the way that mice might be experiencing emotions? If we can talk about emotions in mice. Or —
Ginsberg: Absolutely, you can talk about emotions in mice. It’s not necessarily the same as in humans. Choline may actually increase cognitive reserve, in the sense that it might actually give you a larger dynamic range for your memory, for your learning, for your cognition, and for your emotion. So, you might have a bigger palette to work with. So, this is not necessarily a one-to-one relationship that an animal is going to be more emotive, or less emotive, but might have a better range to handle emotion. So, animals, for instance, that are the offspring of choline-supplemented moms, tend to be less emotive in the sense that the get less frustrated with a task, but the task has to be sufficiently hard to make the normal mouse upset anyway. The Down Syndrome mouse, based on the way it was created and the genetics therein, is more emotive to start with. So, they’re hard questions to answer 100 percent.
So, what we have to do is put it in legal terms, in the realm of reasonable doubt. So, to date, in the realm of reasonable doubt, the Down Syndrome model is more emotive. It shows more distress if you mess with them. If they don’t get the reward where they think it comes, or if they’re distracted more, they’re more emotive, they jump a little bit more, the task is harder for them. With choline supplementation, that is attenuated to a degree.
Campano: I asked Dr. Ginsberg about whether it’s accurate to use the word “normal” to describe individuals without Down Syndrome.
Ginsberg: What I try to do is not get into the whole jargonese, but you’re absolutely right. To someone that’s out there: Down Sydrome does not imply that they are not normal. The range of emotions for someone that is genetically — genetically — what’s the term that we don’t use for normal?
Ginsberg: Yes, typical. Someone that has typical genetics can have the same range of emotions, and have the same difficulties, and feel the same way. That’s in a different avenue, and a different venue, and it’s into human, and humanistic, and into personality. When we’re describing, although we talk about emotionality, it isn’t in the same vein, not in terms of personality.
There shouldn’t be a stigma, and as a matter of fact, that was something that we struggle with in the Down Syndrome world right now, is that we need to have registries. The United States should have a full Down Syndrome registry. We should have clinical trials that are available. We should have work groups. I’m actually trying to do that with several places in several different townships. And the Alzheimer’s Association is actually working very hard right now to actually include Down Syndrome into this world.
The autism world has actually benefitted by banding together, and grouping together, and having awareness, and I implore the Down Syndrome world to do that as well.
Campano: This is the Best Medicine on WKCR. I’m Erik Campano. With pre-natal testing, expectant mothers can find out if their fetus has Down Syndrome, and may terminate the pregnancy. We explored this issue with our guests on parts I and II of this program. Britt Sady, mother of a Down Syndrome child, Doula, and Executive Director of a Down Syndrome Achievement Center, Gigi’s Playhouse New York City, gave her thoughts on the matter.
Sady: I get calls weekly. A mom just found out she has a Down Syndrome diagnosis, and she wants to know — she doesn’t want to say it, because she knows I have a kid with Down Syndrome — but she’s considering whether or not this is a pregnancy she wants to move forward with or not. And I still do real Doula work, every day, and the idea is just to give her that space every day to say, hey, listen, I’m not going to judge you if you terminate it because of sex selection. I personally believe that babies should come into this world when they are wanted, but I do hold a private belief that if you terminate a kid with Down Syndrome, that you are probably going to have some intense pain to deal with, and intense confusion and sadness, and I don’t know anyone who actually gave birth to a child with Down Syndrome who didn’t just shudder at the fact that they even considered terminating it.
Campano: Advocate and another mother of a Down Syndrome child, Tracy Nixon, had this to say about genetic testing and termination:
Nixon: For me, as a mother, I often say to people, I don’t have as much opportunity to counsel women who are pregnant and found out they have a child with Down Syndrome as I did a few years ago, but I would always say, and I stand by this today, that everything I wanted in motherhood I got in my child, with Laura.
Lyle: And Andrew.
Nixon: And Andrew. When I decided that I wanted to be a mother, and she was born with Down Syndrome, nothing changed in terms of my mothering. That was really important, and I always encourage new mothers to consider that, that it doesn’t change, that you always have this wonderful, loving child to give you the great experience. Yeah, there are things that we differently that we would not have done if she didn’t have Down Syndrome, but for the most part, my experience as a mother, I feel like I got everything I wanted out of it.
Campano: Our Producer, Linh Tang, thus posed this question to Dr. Stephen Ginsberg:
Tang: …statistics that Erik gave me yesterday, that about 92% of women who are pregnant, and they find out their kid is going to have Down Syndrome, 92% of those women decide for an abortion, and I wonder what do you think about this statistic, and what is your stand on the matter?
Ginsberg: It’s a multi-answer question. So, I think that prior to the genetic testing era, the distribution of Down Syndrome fetuses, babies, was throughout all socioeconomic strata. Now that there’s pre-natal testing and screening, the socioeconomic demographic is shifting, as more wealthy people that are older, that can afford to have testing, are aborting these fetuses. So, Down Syndrome in itself may change in society in future generations, because of the ability to terminate.
On a personal level, having two children myself, and being a firm believer in screening for genetic disorders — especially one that you know there’s going to be Alzheimer’s disease on the other end of it, essentially inescapable Alzheimer’s disease — I would opt to terminate, and I think that, again, it’s a personal decision, but I think that that, to me, seems to be the approach, particularly in modern society, assessing the costs, physical and otherwise, and the benefits, and then at the end of the day being confronted with a neurodegenerative disorder with no cure.
Campano: When we speak with advocates about this, they say, people who have Down Syndrome children, if you said to them, after the child was four or five years old or growing up, oh, you could have chosen to abort this child, at least what we’ve been told is, they react in horror. They can’t imagine that they would have done that.
Ginsberg: That’s absolutely an unfair, loaded question to anyone that bonds with a child. That’s the attachment of this wonderful — that tells you that that’s my mom. That’s a good mom right there. [laughter]If they said I’d want to cast away — that’s a sign that — it’s a human. Of course, once you have the child, I don’t care whether the child has Down Syndrome, Fragile X, Autism Spectrum Disorder, or it’s typical genetics — that goes out the window. It’s your child.
But, as in the caregiver with Alzheimer’s disease patients, these people become caregivers for the rest of their lives. Now, one could say, as a parent you’re always a caregiver, but there are varying levels and times and requirements of it.
Campano: Even though some individuals with Down Syndrome go on to lead independent lives.
Ginsberg: Without a doubt. Not only do they lead independent lives, they become role models and contributors to society. That being said, it’s a population that we’re concerned about, and we’re concerned about the population of Down Syndrome people themselves, and their families, and their caregivers, and as the potential dementia goes on, it becomes even greater. So this is a very thorny issue. You have to think about the glass as being half full.
Campano: Dr. Stephen Ginsberg, Research Scientist at the Nathan S. Kline Institute for Psychiatric Research and Associate Professor in the Department of Psychiatry, Department of Physiology & Neuroscience at New York University Langone Medical Center.
The conversation continues at thebestmedicineradio.com. You can read a transcript, leave your comments, and learn more about the guests and resources mentioned on this program.
The Producer of the Best Medicine is Linh Tang, the Marketing and Technical Director is Jean Kremer, the Content Editor Evan McWilliams, the theme music composer Tim Hoyt and the graphic designer Gabe DeSanti. I’m Erik Campano [music up and down] This program was originally broadcast on May 26, 2015. The Best Medicine is a production of WKCR 89.9 FM and WKCR HD-1, Columbia University in the City of New York.
About the guests:
Britt Sady is the Executive Director of Gigi’s Playhouse New York City, a community and education center specifically designed to celebrate and support individuals with Down Syndrome.
Dr. Stephen Ginsberg is on the forefront of study of Down Syndrome. He is a Research Scientist at the Nathan S. Kline Institute for Psychiatric Research and Associate Professor in the Department of Psychiatry, Department of Physiology & Neuroscience at New York University Langone Medical Center.
Tracy Nixon and Laura Lyle are a mother-daughter combo, Tracy a leading advocate for Down Syndrome individuals, among them Laura, an 11-year old student who speaks with eloquence and joy about her life and about the condition.
About the image:
Photos of Peter Loftis were taken in his home by Sólný Pálsdóttir. Peter is a volunteer at GiGi’s Playhouse New York City.