A Mother's Journey with Trisomy 21with Author and Educator Nancy M. Schwartz

Picture this: You're a parent, your child has been diagnosed with Trisomy 21, and conventional education seems like a puzzle you can't solve. That's what Nancy M. Schwartz, mother of cellist Alex, faced. But Nancy didn't just cope; she used her experience to inspire new perspectives on education, inclusivity, and the power of narratives.

This episode is a deep-dive into Nancy's journey - a testament to her resilience and the transformative power of storytelling. As she shares the challenges and blessings of raising Alex, Nancy highlights the overlooked abilities of those with disabilities, urging us to see the unique gifts they bring. Her perspectives on differentiated education and mental health, especially in the face of the pandemic, challenge us to rethink our approach to these issues.

But this conversation is not just about challenges, it's also about celebration - the joy of music, the importance of sharing our untold stories, and the thrill of breaking free from performative behaviors. Nancy shares an excerpt from her book 'Up Not Down Syndrome', providing a unique lens into Alex's musical journey with his cello. We wrap up by exploring the difference between propaganda and redemptive content, reminding us all of the power our words and actions hold. So, tune in and discover the profound influence of stories and words.

Guest Bio: Nancy M. Schwartz has taught in Pennsylvania for twenty-six years. She holds certificates as an ESL program specialist, reading specialist, and elementary and early education teacher.

Nancy’s undergraduate degree came from Temple University, in Philadelphia PA, and she attended graduate school at Saint Joseph’s University. Nancy spent several summers studying at the Teachers College Columbia University, Reading and Writing Project. As a positive and courageous spirit full of life, she enjoys ballet, reading, writing, art, fashion, animals, music, and most of all, motherhood.

Learn more about Nancy M. Schwartz at https://www.upnotdownbook.com

Transcript

Speaker 1: 0:21

Hello and welcome to Language of the Soul podcast, where life is story. First of all, before I introduce today's guest, I'd like to say hello to Virginia Grenier, our producer and fellow author, and her new title in my brain anyway is Renaissance Woman Extraordinaire.

Speaker 2: 0:42

Thank you for having me on here and giving me a new opening I really, I thought you were going to go with the librarian.

Speaker 1: 0:50

Oh no, We'll get to the, we'll work up to that one.

Speaker 2: 0:53

Everybody's like. What does that mean?

Speaker 1: 0:55

Yeah, I don't think our listenership is ready for that yet. Our actual nicknames. But anyway, you do. You do tend to do it all, so my hat is off to you. Thanks for being here.

Speaker 1: 1:07

And again, before introducing our guest, I'm going to do my best at sharing her bio the way I understood. I'm very impressed and I believe Virginia is as well. I think it's going to be a very inspiring episode and partly because a big premise of the book and of course, the podcast is that story transforms. You know, by telling our stories we shift our own paradigms but then, by extension, those of society at large on the macro level. So I think, just you know, I saw it as the embodiment of that process of not so much turning lemons into lemonade. But I think even the book jacket of the book that we'll get to said something like turning challenges into gifts and crises into opportunities is another way of putting it. And anyway, that's a big premise of the book. So I'm excited to talk about that aspect.

Speaker 1: 2:08

Nancy M Schwartz, author of the duology Up Not Down Syndrome and Up Bow, down Bow, bow Down Bow, is an educator and a mother navigating the blessings and challenges of raising Alex, her son, with Trissamy 21. Among other diagnoses, I believe we can get to that. Nancy M Schwartz has taught in Pennsylvania for 26 years. She holds certificates as an ESL program specialist, reading specialist and elementary and early education teacher. Sorry, my dog's chewing on a bone. I hope you can't hear that, nancy, only mildly distracting.

Speaker 3: 2:47

It's foreshadowing, because my network is about dogs, oh nice, Nice.

Speaker 1: 2:52

Yeah, I did read that. I'd love to know the title in just a moment. Nancy's undergraduate degree came from Temple University in Philadelphia, Pennsylvania, and she attended graduate school at St Joseph's University. Nancy spent several summers studying at the Teachers College, Columbia University reading and writing project. As a positive and courageous spirit full of life, she enjoys ballet, reading, writing, art, fashion, animals, music and, most of all, motherhood. Welcome, Nancy.

Speaker 3: 3:22

Thank you so much. Thanks for that introduction.

Speaker 1: 3:25

Of course we're so glad to have you. Is there anything you want to clarify? Did I butcher your resume entirely?

Speaker 3: 3:33

You did beautifully. The only little clarification is since the book came out, I've actually taught now in Pennsylvania, including college level, for 32 years.

Speaker 1: 3:42

Oh, wow, yeah. Well, that's what happens right. Time marches on, doesn't it yeah?

Speaker 3: 3:46

Keep going, keep going. But I was just going to say, yeah, I need to.

Speaker 1: 3:49

Yeah, speaking of which, I need to go and linked in and update my bio and resume. Right, you blink, you blink and yeah, yeah, anyway, ok, well, I guess one way in is to go with the angle that really appealed to me. Something really impacted me in reading as much as I could in preparation for today. So in an excerpt that I was able to listen to online, I was impacted by Alex the cellist, initially being awed by his new cello and his parents' faith in him to succeed. You believe in me, I won't let you down. So what came to mind for me was this conventional wisdom children become what you tell them they are. So does that resonate with you at all like the capacity and the possibilities that he was so excited to fulfill?

Speaker 3: 4:43

Absolutely yeah. He just really seems to radiate and rise when he's given that opportunity.

Speaker 3: 4:51

And the teacher was actually told not to bother teaching him because if he had Tri-Sinni 21, which is the medical term for Down syndrome and he doesn't walk or talk yet, just tell the family you can't help him. Thankfully he was her first student out of college and she's been working with him for over four years and he just had his first performance at the orchestra at school. And it's just, he's still full of possibility and I think we all just kind of see what's right in front of us and not necessarily what's underneath and inside us.

Speaker 2: 5:20

Yeah, that's beautiful.

Speaker 1: 5:22

Yeah, I'd go ahead.

Speaker 2: 5:24

Oh, I was going to say because I don't know how much background you've looked into. As I know we shared a little bit, dominic and I, of who we are. But you know I'm of course in school working to my licensure, so I can do clinical mental health and you know, I was just kind of listening to you talk about that.

Speaker 2: 5:43

One of the things that I've been looking to do is so here we have a group that works with quite a few families that have children who have Down Syndrome and then also autism, and it's amazing how so many people overlook the things those kids can do, because they focus so much on what people consider to be a disability versus looking at what they are capable of and what they're able to teach everybody else who we call normal in the world. So through his level, so true, so true.

Speaker 3: 6:19

I mean, I just think of those little things on the ground, those little prickly things we step on and get annoyed by, but they're full of seed and full of possibility, and so is he, and so is everyone and all kids. You know, we always try to fix things, but sometimes we just have gifts that we have to really treasure.

Speaker 1: 6:37

Absolutely. I figured we'd work up to this, but why not dive right in? You know, that's really that's my feeling is do you have any opinions on what, let's say, non-binary or other abled children have to offer us? What is the big gift, if that makes sense?

Speaker 3: 6:57

I think it takes a village. Yes, yes, yeah limitless passability, and I think we just all need to embrace each other and become more unified. But also unified and just our unity of existence. I think that's something that we all need to strive for, because everybody, everyone was yes, my friend, jessica, from Sweden, talks about how her dad always said that, and it's so true. We all just have something to give.

Speaker 1: 7:22

Well, inner connectivity is the word of the day right. With so much divisiveness, I do think we all need to realize A it takes a village, right, it takes all kinds, and everybody's got their unique gifts that they're meant to contribute. So, but yeah, I just wondered if you felt like there was a specific gift that you I'm sure you do a specific gift that maybe Down syndrome or Tristan B 21, but specifically Alex has brought to your family and maybe to those around him, to the world.

Speaker 3: 7:53

Yeah, oh my gosh, there's so many. That's my first book is really full of all the gifts and all the lessons that he's taught me, but one of the most important ones is that everyone is important and it isn't just some people that are important because of some things, and I think often we forget that, and that's one of the biggest ones that I've taken from him, and just joy of life, he's just full of a light.

Speaker 1: 8:18

It's a reminder, isn't it? It's a reminder of what matters in life.

Speaker 3: 8:23

He is totally a reminder of what matters.

Speaker 1: 8:25

Love right yes.

Speaker 3: 8:28

Yeah, and he doesn't speak yet, but yeah, he says so much just by existing. Yesterday we went to the October fest at the college where I teach, rosemont College, and he won something. He won maracas and he won. Wow, and that was like such a huge thing for him to sustain a grasp on something, and he ended up meeting the president of the college and it was such a nice experience. That's just how he is. He just calmly comes in and wins the day, and that's just kind of what he is, well.

Speaker 1: 8:55

I guess that's what. Yeah, that's what touched me, yet let's not leave them out. But that's what really touched. Yeah, that's what really impacted me about his excitement because in a way he was thrilled that you saw potential and capacity in him and had faith in him right and succeeding with the cello. But it's almost like he doesn't know his limitations. We learn our limitations, so you know Paul Coelho. Paul Coelho, the alchemist which everybody I love that book.

Speaker 3: 9:25

I love that book. I follow him on Twitter. I love him.

Speaker 1: 9:28

Yeah, he's amazing, but he spoke of how beginners look. He called it. So, if we all have, you could call it a calling or a ministry, but he calls it our personal legend, right? If we honor that and are true to our personal legend, the universe conspires in our favor. So he calls that beginner's luck. I call it not knowing your limitations, right. So I feel very blessed that I was raised in an environment where I didn't know any better. You know, and then slowly over time the doubts get in and the disillusionment and you have to sort of relearn that stuff. So I think all children we could learn the lesson of it.

Speaker 1: 10:07

It's kind of we're better off when we don't know our limitations.

Speaker 3: 10:11

That's right, and after I finished the alchemist I was left with that idea that the treasures inside of Beautiful yeah. Side of us and that we need to just be able to access that. And you're right, that's it.

Speaker 1: 10:23

Yeah, and that's a very universal theme the Wizard of Oz. Everything you need is in your own backyard.

Speaker 3: 10:29

And how we approach it. Yeah, beautiful.

Speaker 1: 10:33

So, on the educational, you know the academic aspect in Virginia, you can probably speak to this. But there's a lot of talk of diversity and inclusion right, and sometimes it's just a box that you check and make sure you're fulfilling it, but it's so much more nuanced than that. So something that came up for me I've been reading for good or bad, probably reading too much Deepak Chopra and then Bruce Lipton's the Biology of Belief, and they both talk about this idea of synaptic pruning. That fascinated me and I may not get it exactly right. But we continue.

Speaker 1: 11:08

After birth, after arriving on the planet, our brains continue to produce brain cells. So at the age of six months we have more brain cells than we'll ever have before or after. But then this synaptic pruning happens, where if you don't use it, you lose it. So, like certain brain cells that might lend themselves to, I don't know, playing the cell or any number of things, did they get snipped, which is tragic to me, and that's why we have programs like Sing to your Child, right, read to your Child, because the stimulation is a huge part of it. So does any of that resonate with you and how do you feel education?

Speaker 2: 11:45

is handling it definitely does.

Speaker 3: 11:47

How is education?

Speaker 1: 11:48

handling diversity and inclusion.

Speaker 3: 11:50

Yeah well, so that's a big question. I just think of that movie about water and how water responds to feeling you know water.

Speaker 1: 11:59

What the bleep was it?

Speaker 3: 12:01

Yeah it's just like how we approach each other and to treat each other. It's such a paramount, huge thing.

Speaker 1: 12:09

Words and right the vibrational power of words and emotions.

Speaker 3: 12:14

Yeah, I mean I think it was Maya Angelou. She said, like words live in a room and you can feel that energy it is. It's a palpable feeling that when someone embraces you and helps you, you can feel that and you can also feel the opposite.

Speaker 3: 12:26

And as far as education and how it embraces it, I mean I hope that we're learning more and more, but I think the pandemic just underlines so much of what we still need to do and the work that we still have to do and how much the haves have and have nots do not have, and how much we need to do together to bring that you know and to just really help each other, more so than we ever have.

Speaker 1: 12:47

Yeah, really brought mental health issues to the forefront, right, but also maybe, like you said, the difference between the haves and the have nots. Who is living through the cracks?

Speaker 3: 12:57

Yeah, I mean, if you didn't have a computer at home for Zoom, then you weren't in school at all. And you know, even with the Zoom computer it wasn't really ideal, but it just. I think we have so much more work to do to bring us all closer together in that form as well.

Speaker 1: 13:11

Well, virginia, jump in at any time. But that leads me to one of my sorry, it leads I am the host, by the way leads me to one of my questions, which is but really, virginia is way more in touch because she has children. I have 22 nieces and nephews, but I'm not.

Speaker 1: 13:29

Yeah we're a very we're a fertile clan. I'll leave it at that, but I'm off the hook. So and then I taught for 20 years so I actually caught them coming out of the public Right. I taught college level so I kind of saw the changes generationally in education. So I guess I wonder if you're familiar with VARC or the Waldorf schools, the idea that there are different types of learners and we actually can cater right to the different modes of learning and the different types of learners.

Speaker 3: 14:01

Yeah, I think differentiation is the key and I think that's really what my co-author for my second book embodies. She differentiates like she provides that rigor of academics for the cello, but also the guidance and help that Alex needs because he can't sustain her growth by himself. But she helps to figure out how to navigate that. And I think that's what we need to do for all of education, and that we challenge people but also meeting them where they are and giving them what they need. Carol Tomlinson did a lot of work in that area for differentiation. But it's so important because you know you can learn about the cell and you don't have to necessarily just take a test. You could make a diorama, you could act along, there's not just one way to learn something.

Speaker 1: 14:39

It's funny you would say that I remember in college, in junior college, when I was getting my general ed out of the way developmental psychology class, and the idea was to put yourself in the space of a child, literally looking up at the world. And it was meant to be a play by play, you know, go throughout your day and document, but instead I made the mistake of writing. The trees flew by like soldiers marching into battle.

Speaker 1: 15:04

And the teacher literally wrote did they really march by like soldiers? And I was like, oh, that is the epitome of a discouraging educator. And then I was learning my art history at the time in preparation to go to art center, and I wrote a compare and contrast essay and I happened to know my art history but she literally accused me of plagiarism back then, before the end of the conversation ended with well, I don't believe you, but there's nothing I can do. How discouraging is that I'm sorry.

Speaker 3: 15:37

I am sorry those teachers also. I mean, it's just, I guess all of life is a lesson and you learn from that and you'll never do that to a student.

Speaker 1: 15:47

Well, I'm also. I'm a rebel without a cause. So it probably was. You know, it was probably good, something good to rebuild.

Speaker 3: 15:54

Right, and I feel like that, like those hard lessons do teach us things that we can bring with us to other spaces and places. That's true, but not fun to go through.

Speaker 1: 16:04

Well, I only later did I realize. Oh, that's what they mean by. Like you know, it's a lot of responsibility being a teacher.

Speaker 3: 16:11

I didn't let it get me down, yeah.

Speaker 1: 16:15

Anyway, Virginia, what are your thoughts on how diversity and inclusion is being embraced in education? I know we have a long way to go.

Speaker 2: 16:22

Oh yeah, no, we absolutely do. I mean, even within my own studies right now, at the university level, and when I and I don't want this to come across wrong to anybody that you know listens to this podcast, but when I, when I think about the whole inclusion and diversity thing, the problem is is sometimes at least what I'm seeing now starting to bounce out slightly, but on the university level anyways, they were, instead of going too far to the right, they were going way too far to the left.

Speaker 2: 16:53

So, it was making everybody on the right feel a little bit more like not included or attacked Right right and so that's, that's kind of. That's kind of what I've seen happen with, in my think, mental health has become such a forefront since COVID, like you guys brought up, because you first had where people are feeling, you know, oppressed and not feeling like they were included, and then the voices started speaking out and so every just kind of gone that bandwagon, and then all of a sudden started isolating the other section of the world.

Speaker 1: 17:26

It's so tricky.

Speaker 2: 17:28

It is. It's such a balancing act and it's funny that you mentioned, dominic, about how you know you guys were asked to basically, you know, get down at a child's level and you know in your class, because when I used to teach writing here where I live in Utah, one of the first things I did in my writing 101 class was actually tell these, you know, aspiring authors, you know if you're going to write. It was for the ones who were wanting to write for students and teens in that class particularly. I tell them, you know, get down on the floor, like literally on your back, and perceive that room that you're in at that toddler level, at that three year olds level, at you know the six year old level, at the eight year old level, because you know they're a costly, because they are, they're basically you know what's why we call them regrats.

Speaker 1: 18:17

They're looking up at the world at a totally different perspective.

Speaker 2: 18:20

And that's and I think that's kind of the one thing that you know, which is sad that your teacher didn't understand and kind of came at you for Dominic is because you know and I feel like that's you see this, because of having Alex in your life, you get a very different perspective of what, of how the world's looked at, because you know whenever he talks about like the norms of society and and culture and and West, acceptable. The problem is is it becomes such a you know horse with the blinders on and we forget there's other vantage points to be looking at the world from. And so when you get those unique, creative people or you know someone who comes from a different cultural background and they see something different, or just internally they just feel like they're different from everybody else so they have a different perspective. That isn't the norm. We kind of push them to a side and forget like hey, they may see something we didn't know.

Speaker 1: 19:15

Yes, and there's value to all of it, yeah.

Speaker 3: 19:17

Yeah, yeah, so true, so true.

Speaker 2: 19:22

So, nancy, I'm curious, because with Alex I mean, obviously music's been a big, a big thing for him and his communication with you guys as a family Can you, can you kind of share what that transformation has been like for your, for your family and and kind of seeing the world and in a new way through that viewpoint of Alex's.

Speaker 3: 19:41

Yeah, I mean it's helped him in so many ways, I think also just confidence level, because he sees that we see that we see him. Recently we saw rhythm bath, which is a performance done by a choreographer whose son has challenges, and she made the stage, part of the dancers, everyone's part of the performance, and my husband and I looked at each other and cried as we watched.

Speaker 3: 19:59

Alex watching it because he was so focused in on the beauty of the lighting and the stage and the dancers and the music, and I think he looked at it differently because he is a musician and a cellist, so for one, but also because this atmosphere was provided, that was inclusive. It wasn't. You have to be quiet, they're performing.

Speaker 3: 20:18

He was part of the performance and if you ever see rhythm bath somewhere, you should definitely check them out Also. Yeah, they were incredible. Also, we were just kind of at a local place in the town of Wayne and it's 118 North, 118 North. They had a live guitarist and Alex, just he kept rocking to the beat of the guitar and just that's what he does now. He feels music like a musician. If you're on a car ride and there's music, he will just rock out to it and it's so beautiful to watch because I know that he feels the music differently, having learned all the terms and just given that opportunity. So in that sense, also in his every day, I mean because he has OT, occupational therapy, physical therapy, speech therapy so all of those things also have helped in those areas.

Speaker 1: 21:07

Is it fair to say like, because the movement is a big part of his world, right, and that is he, like a kinetic learner, in other words. Is that his way in?

Speaker 3: 21:18

I think that is part of it, also audio and visual. But I think just holding his toothbrush now it's a little easier. I mean it's always do a perfect, but because he holds that bow on the cello, right right, some motor skills improve, yeah well, what struck me, though, is beautiful, oh well.

Speaker 1: 21:37

Well, for me, though, it is also like it bypasses cognition in a way. I think it's ironic. Our title is language of the soul and Virginia and I had to really parse I'm talking about story being the language of the soul, not language being the language of the soul. You know that's the whole premise of the book, so it's originally was called word and image story of the soul. So story is comprised of word and image, and you can reach people through the heart, the minor, the viscera I call it right and sometimes the ineffable, intuitive, nonlinear is more powerful because it predates language. So I am really touched when I see a child. That is just, it's so wired in us to sing, to move, to dance, and it has nothing to do with cognition, if that makes sense. It's almost ineffable, is my word. Yeah right.

Speaker 3: 22:31

And yet it helps all those things because I feel like his comprehension of that rhythm back performance was so much more comprehensive now that he's had this experience.

Speaker 1: 22:39

So Beautiful yeah well, I'm gonna take the opportunity for a slight transition. I mean to be somewhat linear. Is any of this related to the excerpt that you've chosen? I'm hoping you have an excerpt that you can share with us.

Speaker 3: 22:53

All related. I have both books. Would you like me to share one from up down to absolutely yeah, whatever you're inspired to share, yeah. Okay, sure, sure, sure. So this is just a page from up, not down syndrome and the way that the book is our story, and then it's basically the lessons he's taught me and in his voice, if he could speak, what he would say. So I'll just leave you a quick part of the story and maybe a couple of the lessons and a little of his voice has that.

Speaker 1: 23:22

Perfect sounds good.

Speaker 3: 23:23

Okay great, alex's situation was out of my control. I was forced to ask myself what was in my control. The answer was my actions and attitude. The answer is always my actions and attitudes. Throughout the days and weeks I waited for my baby to come home. It seems like I'm going to have to go for a month. I found myself thinking often.

Speaker 3: 23:47

I have a greeting card I had purchased in Maine when Michael, my husband, and I were dating, and the card read the longer I live, the more I realize the impact of attitude on life. Attitude to me is more important than fast. It's more important than the past, than education and money and circumstances and failures and successes, than what other people think or say or do. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past. We cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude. I'm convinced that life is 10% what happens to me and 90% how I react to it, and so it is with you. We are in charge of our attitude. That's from Charles Swindell, but I love that.

Speaker 1: 24:45

Woohoo, yeah, you're preaching to the choir man oh wow, woohoo.

Speaker 3: 24:50

When we nurture ourselves, we have more to give those we love. This is particularly important when caring for a child with challenges. In those early days I had to force myself to care for myself. I was so consumed by mothering I struggled to see myself as a separate entity With needs and desires abroon. So that's just part of the story in that chapter.

Speaker 1: 25:09

Beautiful.

Speaker 3: 25:10

And then the lessons of the chapter. Thank you, the lessons Alex taught me and it's just a picture of Alex with his friend, and I never thought he'd have friends when he was born. And it's his first friend, which you can't see, but it's a cute picture it is possible to make life long friends.

Speaker 1: 25:24

Well, maybe is that one of the pictures that we're going to post with the episode.

Speaker 3: 25:28

It could be, it could be, it is possible to make life long friends by connecting with them through the heart. The future is full of hope. The future is bright. Friends keep us happy, positive and peaceful. Learning about others, their lives and rituals is important. Taking care of one's own needs is essential. Just because a person cannot speak does not mean they cannot understand or communicate. Tolerance is not enough. It's not enough to be lost. Embrace difference and accept everyone, especially children, as they are. And then if Alex could speak? This is so. Each chapter ends with his voice. Alex, I am happy to be home with my family. I love them all more than I can ever say that hospital is nice, but it's not my place. This is wonderful to be together. I love seeing my name A-L-E-X on my door with my brother's name S-A-N-M. Oh my.

Speaker 1: 26:30

God. That's my reading oh, wow, Wow, beautiful. I love the structure. You know ending with the lesson, and specifically from his POV, that's amazing.

Speaker 3: 26:41

Yes, powerful, thank you, thanks so much, virginia, you can jump in.

Speaker 1: 26:46

But I guess one thing that struck me about that is your own learning curve, which to me that is a big premise of the book and the podcast is the cathartic function of writing and how we do kind of.

Speaker 1: 27:03

Anyway, from what I understand, part of the catharsis is we do create policy, not just an emotional catharsis through the creative process, but by telling our stories. We actually write policy for our own life and that's how we get unstuck, aristotle would say, from our complexes, right, and that's how we move forward. So in my own writing I've always reached a point where I think I know what I'm writing about, I know what the themes are, but there's always a surprise like, oh, I was actually subconsciously working out A, b, c or D, and it is a lot of responsibility to write policy for your own life. So what I loved about that is just how beautifully you expressed this idea that we do have power over our worldview in any given moment, and that is the narrative right that we tell ourselves. And any moment can be transformed, and I would add, from fear to love, right, that's what storytelling is. You're hinging on fear and love. So just beautifully put.

Speaker 3: 28:01

Thank you so much. Yeah, and it is like that. For me, writing is just like what you talked about. It is just it focuses me on what is important and then helps me to have everything else that is not important.

Speaker 1: 28:12

Yep, Do you ever read it later and read your own writing later and see other levels in it too? It's like oh, I didn't realize I was saying that.

Speaker 3: 28:22

It's true, and just like you can pick up a book at different points in your life, the same book and see it.

Speaker 1: 28:27

Absolutely yes. Yeah, well, the Alchemist, you could read that at 20, you could read it at 40 and 60, and you're going to get a different meeting out of it. Anyway, as a writer, virginia, as a writer, do you have any comments on that? I guess the catharsis is one way of putting it, but I think, separate from the emotional catharsis is, like I said, kind of transforming your thought forms and your paradigms and your ideas.

Speaker 2: 28:53

Yeah, well, and I was wondering. I mean because the other thing too, I know when, when we set out to write and usually you know I most people who want to write a book and get it published it's because you feel like you have Something to say and share with the world.

Speaker 2: 29:10

So I'm just kind of curious when, when you sat down and and decided you know I want to share you know, the story of my son Alex, and you know just kind of the lessons my family and I have learned, what, what were you really hoping to convey to your readers? You know, because I'm sure it's part of it had to do with, you know, kind of breaking those stereotypes and the misconceptions of, you know, down syndrome?

Speaker 3: 29:32

Yeah, what's a good question? Yeah, so when he was born, I really thought our lives were over. Josh and Sam.

Speaker 3: 29:39

What did I do to them, my other sons, and you know he wouldn't be cute, he wouldn't be invited to birthday parties and we would just kind of curl up and die and that's it. And and in the hospital, this mom who actually started the buddy walk which is going on today, of all things, today it raised enough money to have a whole center at Children's Hospital in Philadelphia for tries to meet 21 this walk she is created, so grace came to the hospital one of the women that created this walk, and she told me three things. She said Her dad told her that people will respond to your son the way that you respond to him. And she said he's not taking anything away from Josh and Sam and he's just, in addition, he's not taking anything away. And she said every day, say the serenity prayer.

Speaker 3: 30:24

So those three things, I kind of kept them in the hospital and at that moment she came, you know, dripping in blood and I just had to be. I don't usually meet, you know, people I don't know well like that, but Stay, stayed with me to this day. I mean, alice is gonna be 15 and you know it's so true and that when I learned that from her and I started to see how adorable he was and how you know, these people were surrounding me with this love and community. I wanted other people, who may have been thinking initially how I thought that my life was over, to know that no, this journey, this path is a little different, but there's and I'm guessing you're your other children bore that out too from all the examples I've seen.

Speaker 1: 31:08

My siblings wouldn't have it any other way. They see the gift in all of them.

Speaker 3: 31:12

I really think you're right. Actually, I mean Josh, the oldest one, the kindness award. After Alex was born. Sam also was just incredibly kind to people. They're both at University of Virginia studying and Josh had been a community college, transferred in and Almost weekly he and Sam will meet up with a young man who lives in a group home who's lost both his parents and then ultimately, his teeth Because there wasn't someone to brush them. But they take him out, they take him grocery shopping, they take him for lunch and they call him and he calls them and is able to have that. I don't know that they'd have that kind of kindness To help other people if Alex were not in the world. So I really do see the impact that he's had in a positive way for them, definitely. So long answer to your short question beautiful.

Speaker 1: 31:59

No, I love it.

Speaker 3: 32:00

I want yeah, I wanted people to know All those lessons and he continues to teach me things. It's not done.

Speaker 1: 32:07

Well, there's so many levels, you know there's so much, and that's why you've written books, you know, and I do I think the links are gonna be in the description, so people will be able to but there's so many aspects to this, which is why I kind of want to talk about it through the lens of the spirit of this podcast which we have, I think you've beautifully supported. You know, not that we have an agenda, but we do want to impart just the immense power of storytelling In society and for the individual. And, yeah, this is, this is such a vivid Example of that. So I don't know, I guess, in that spirit, I'm just wondering if you could speak to let you were a writer before all of this happened, right?

Speaker 3: 32:49

Yeah, I did write some articles, but nothing like a book.

Speaker 1: 32:52

But yeah, so what was the precise moment? I know you carried those words with you from the hospital forward, but was there a precise moment of inspiration where you just knew this was your mission or not, to put words in your mouth? Your mission or you're calling, or your muse? What was the pivotal moment?

Speaker 3: 33:09

Well, it really wasn't the hospital after Grace's visit. I actually thought of a title then and I thought you know what and I need to share that, and so from then on I just have to notebook. Because I work as a teacher and I just would take like a little moment latte in the morning and write.

Speaker 1: 33:26

I hear a woman after my own heart. There's gotta be caffeine on the writing process.

Speaker 3: 33:33

So every day in my work day I would just take this little time for myself to write in this notebook. And you know it just kept going. I found a wonderful developmental editor and she helped me kind of really hone in on my message and it just kept evolving and then thankfully, a publisher was interested in it.

Speaker 1: 33:50

Wow. So I really don't love to talk about technique. I find it kind of boring. I'm more into the why. Why do we tell stories? Right? But out of curiosity, do you? Did you outline it? Did you massage, kind of find your way? Did you do it in a more linear way, without outlining it? Just curious how you approach it was not.

Speaker 3: 34:11

It was not outlined, it was just you know conversations over her people saying you know he's never gonna walk yet you know things that would just kind of really suck the life out of my soul. Or you know things that I was really struggling with. I would just jack those down, but the developmental editor really helped me to kind of focus in on what I wanted to say.

Speaker 1: 34:28

Yeah, because I think craft the conversation between craft and intent, or you know what is the inspiration that you're hoping to impart, so the thematic content that's. They're kind of they can be at odds, but ideally, craft or technique is there to help you express what is being inspired by the universe, I would add.

Speaker 3: 34:47

You know, exactly, and what you said about the writing helping me. I mean, I didn't really go to the support groups. It wasn't for my style, but this writing was my support and so Therapy. Yeah totally use it as my therapy and also as my inspiration. But you know, as I kept going through the years with Alex and Josh and Sam, I kept learning more and more and I just, I really wanted to get it out.

Speaker 1: 35:11

So beautiful yeah that is beautiful.

Speaker 2: 35:15

Is there anything you would like you know everybody who's listening to this podcast to take away kind of from you know the things that you've blamed and and the writing of your two books and and just the experiences that you've been able to have your you and your family with Alex and what he's been able to impart upon you guys.

Speaker 3: 35:36

So much. But I mean, one thing is just when you think your life is just gonna be over, it can be the complete opposite. And I mean I think, well, I feel that way. Yeah, I think that you have to die to be reborn.

Speaker 1: 35:49

So, in this spirit, you know, kind of mourning or Putting to bed Disillusionment, right, that's the only way we transform and grow. So it's along the lines of the theme that you hinted at, which is Transformation, right, I think sometimes we have to mourn our illusions in order to arrive in new territory.

Speaker 3: 36:10

Yeah, and it doesn't happen overnight. And the other thing I would say I got a chance to study with Dr Sharon Ravich at University of Pennsylvania in a course on pedagogy teaching, and One thing I've learned from her I mean I've learned a lot from her. In my second book I do have a chapter, but one thing she always kind of reminds me is that we have to free ourselves from the performative like, liberate from that and sort of you know, why are we doing what we do? And it can sometimes just be for the we're just for the sake of doing it, because it gives us joy, and I think we have to do more of that Love it.

Speaker 2: 36:47

I agree, absolutely agree with that.

Speaker 1: 36:51

Okay, well, beautiful, I guess we'll sign off, unless there's anything else you want to share. I would like to say we're going to put the links in the description, but do you have a preferred place for people to find your books? Your website, right, is a good place to go.

Speaker 3: 37:10

So I think there is a bookshop in Radner, pennsylvania, that has my books. There's one also in Bethlehem, pennsylvania, called Merabian. So main point, books Merabian. It's their independent bookshop. So if you can support those, that's great. If you need to mail it, you know Amazon has it Audible. We just finished recording the second book, up Go Down Go, where Alex gets to play a song that his my co-author wrote for him. After each chapter, kind of like on NPR, you'll hear his music throughout the book.

Speaker 1: 37:41

And on that note, in terms of what's coming next on the horizon for you? Tell us a little bit about? I think you said it's about dogs and it's a collaboration with your husband.

Speaker 1: 37:51

Yeah, my husband and I wrote this book before Children and we never did anything with it and thankfully, the publisher really, you know embraced it and it's going to be about kindness and embracing differences and dogs, so yeah, it's so funny because earlier I was tempted to jump in and then I thought, no, I'm not going to compare her child to a dog, but my rescue dog that I got during the pandemic has taught me so much and I started writing a book. Other books took over, but I did start writing a book about. He reinforced every spiritual principle that I aspire to through his example, I love that I love that there's so much.

Speaker 3: 38:31

there's so much incredibleness in dogs.

Speaker 1: 38:33

Yeah, I agree, yeah, and even though I'm not a mother or a parent, I do. My sister wrote a really beautiful book called now I'm plugging her books Maternally yours. It reads like maternally hours, maternally yours it's all one word. But she said and I know you guys will both relate to this that she has four kids, but even with her first two she just said it was such motherhood with such a profound, sacred experience and I had to write about it. I don't think she saw it as therapy at the time, or even thought I had about sharing it with the world as a contribution, but her way of putting it was it was just such a sacred, profound experience I couldn't not write about it.

Speaker 3: 39:15

That's so beautiful. Yeah, we all have to write about our sacred moments, don't we? We really just have to share those. That's beautiful. I want to look for that.

Speaker 1: 39:22

Well, I hinted to bring it full circle. I hinted at Maya Angelou at the very outset, and her quote is there's nothing more agonizing than an untold story that we carry inside I'm butchering it but that we carry with us, and I do. It is my premise that we're wired by evolution, literally to carry thought forms to the next. I mean, it's a bit of a reach and I'd have to explain it more, but I think a simple way of putting it is evolution wants us to be our best selves to reach our potential and our capacity and, through epigenetics, pass that on to future generations.

Speaker 1: 39:57

And telling our stories is how, as much or more than political persuasion, as much or more than as van activism, telling stories is how we change minds. I think we change minds by touching hearts. Okay, I've gotten my agenda in Love it Love it.

Speaker 3: 40:13

No, I didn't say that, that's totally true.

Speaker 2: 40:15

Wait, wait, you said Dominic. You know like. You know we talk. You know Dominic mentioned at the beginning of the podcast. You know what the whole point of what we're doing here is. Yeah, language is important and you know that's how society and culture connects, but it did start more through the auditory storytelling before there was a written language, and that's what's so important about you know what you're doing, nancy, and what other creatives do, be it you know in the written word, or be it in music, or even you know within the writing of a movie and a play.

Speaker 1: 40:55

You know real quick, there's more and more evidence that even the earliest cave paintings in Spain, I think, they're now speculating that the acoustics of the cave right had a lot to do with the development of language. So I anyway, I think that's what I love so much about storytelling is how you can literally retouch all the senses you know. But I think, more importantly, we learn more than the didactic realm. We learn emotionally. So our brains map those experiences for survival right, those that we associate with heightened emotion. So that's why we largely, you know, everything's different. Literature is very cerebral and film is a little more of a feeling medium. But story largely changes thought forms by, you know, appealing to the emotions. There's ethos and there's logos and there's different modes of persuasion. But I just think we learn more in the narrative realm than the didactic.

Speaker 3: 41:54

Oh true, Definitely.

Speaker 1: 41:56

Okay, well, I thank you so much for being here. I know it'll be inspiring to people out there and I hope you feel like you've shared what you'd like to impart.

Speaker 3: 42:05

If there's anything else you want to share, so much gratitude to you both for what you're doing. I love the name of your podcast and it really does speak to me, so thank you so much.

Speaker 1: 42:14

Thank you, thanks for being here and thank you, virginia. So, as our sign off, virginia, I am now going to ask you to pick a number from one to 352. And I'll tell you what I'm going to do with that number in just a second.

Speaker 2: 42:29

Okay, 56.

Speaker 1: 42:31

Okay. So my my brainstorm was to offer a little bit of inspiration in the spirit of the podcast by going to whatever page you've picked and just read the first paragraph at the top of the page. I am hoping that Synchronicity will play its part and alchemy will step in and it will somehow be related to our episode. Okay, I'm going to page 56. Hopefully, maybe it'll be inspiring or enlightening or thought-provoking. One never knows. I'm at the top of page 56 and I feel it in my heart. It's going to be related to this episode. Okay, I opened this chapter by alluding to Woodstock.

Speaker 1: 43:13

At such a communal event centered around the arts, brain waves are known to synchronize. Anyone who's attended a drum circle knows well the prevalence of theta waves. That is the palpable expression of peace and harmony. However, large gatherings can also incite the baser instincts of aggression and mob mentality. Vehemence when the devil's cocktail is induced. That's a term I referred to earlier. Since the dawn of time, demagogues have relied on the innate understanding that by stoking fears of the other, of a common enemy of the future, they can divide and conquer God. How relevant is that right now? Picture that was from my mouth, not the book. Picture the stampede that occur at soccer riots. When chemistry is riding high and aggression is stoked toward the opposing team, picture a Hitler rally or a Trump rally. This is the devil's cocktail of oxytocin and adrenaline at work. So I immediately see a connection to the episode. Do you see any connection?

Speaker 2: 44:14

I totally saw a connection, especially when you start talking about Woodstock and then the drum circle as well, because Nancy talked about her son and being able to go and basically be in a sound circle and be a part of that.

Speaker 1: 44:29

Absolutely, when we are in a communal setting and even like a drum circle. That is interconnectivity and action. And then you've got a little negative when I showed the opposing side of it. But maybe that's the responsibility we have as storytellers, not that to wax moralistic and say there's a good, bad, right or wrong kind of story to tell. But we can certainly choose if we're feeding a cultural addiction to cortisol and adrenaline.

Speaker 1: 44:55

And there's a guy named Dave Megasie that wrote the Year of my Birth, 1968. He wrote the first book about what he saw as the inherent violence in professional sports and the NFL in particular. He made the case that this is habituating people to accept the war in Vietnam, which was in full swing at that moment. So I'm not the only one. You know what I mean and he feels a lot more strongly than I do. But I think we can choose which kind of stories we can tell. Do they have redemptive value and sure that's in the eye of the beholder or is it just maybe mydolous entertainment that's stoking fear of the other, or feeding a cultural addiction to adrenaline and cortisol?

Speaker 2: 45:36

That's exactly why we do this podcast is because that's the whole point of story is. You need to understand the different story and narratives that are out there, but you also need to, so you need to be cognizant of that and be, aware of it. But at the same time you need to pick and choose what you want to feed into your soul of a story narrative to make you the person you want to be in life. And if you feed junk in, you're going to get junk out.

Speaker 1: 46:03

I love it. Yeah, I put it in the book like we're fish breathing invisible water. Some people are so unaware of story that they just buy socialization and the status quo hook, line and sinker. I'm not championing any good, bad, right or wrong kind of story. I'm championing an awareness, like you said. So if we can begin to parse between when am I being sold something? When, what is the fine line between propaganda and actually redemptive storytelling with artistic integrity and literary value, with, as you said earlier, to something to say in the world and you can agree with it or not, but you could call it redemptive content versus, like I said, the mindless entertainment that can be feeding adrenaline and cortisol. But also, when is it propaganda? Just an awareness?

Speaker 2: 46:50

Yeah, totally tied in.

Speaker 1: 46:52

Yeah and love this it's kind of fascinating how it just worked out. I hope that's the case every week and I'm going to end with our little sign off by saying remember, life is story and we can get our hands in the clay individually and collectively. We can tell our own story. See you next time.