Disability and Progress- April 10, 2025-Shine On!

[00:00:00] Speaker A: KPI.org. [00:00:59] Speaker B: Greetings and thank you for joining Disability on Progress, where we bring you insights into ideas about and discussions for disability topics. Whoa. I seem to have a little bit of a hoarse voice tonight, so hopefully everyone will excuse that. Thank you very much for joining in. This is KFAI 90.3 FM, Minneapolis. And kfai.org I want to remind you it is pledge drive and we do welcome your pledge. 612-375-9030 or kfai.org Charlene Dahl is my research PR person. Hello, Charlene. [00:01:33] Speaker C: Good evening, everyone. And yes, it is. It is. It plays Keep Us on the Air. [00:01:38] Speaker B: And Erin is my podcaster. Thank you, Erin. So I'm going to give you a challenge, Charlene, while we're talking, you have your assignment is to find two excellent reasons why people should pledge to this show. [00:02:00] Speaker C: Okay. [00:02:01] Speaker B: All right, it's on. Tonight we have Cynthia Schultz. Cynthia is talking about her book and her family called Shine On. The book is about raising up kids with disabilities to lead bright, happy lives and. Hello, Cynthia. [00:02:22] Speaker A: Hello. [00:02:22] Speaker B: Thank you so much for joining us. [00:02:25] Speaker A: We really appreciate that and I thank you for all that you do for the disability field and it's a real honor to be on your program. [00:02:33] Speaker B: Thank you. Well, I love talking with authors because I always think to myself, I need to write a book. There's so much I've done. I need to write a book. But boy, it is quite an undertaking to write a book. And so I always have a huge amount of respect for anybody who does do it because it's not that you just sit down and do it right. There's a lot that goes into certainly is. I want to start off by asking you to just kind of introduce us to yourself and your family so we can get an idea of who you are. [00:03:08] Speaker A: I am a career woman and mother of four children and over, over a 45 year career. I also raise my kids along with my husband and I have four kids, two boys, two girls and my second born my first daughter. Her name is Noel. We call her Noni and she's now 41. She just turned 40. [00:03:37] Speaker B: Oh my gosh. [00:03:38] Speaker A: She has just, she has disabilities. And I have 40 years of experience raising this child to now be a happy young adult, happy, healthy, with a fulfilling life. And I worried about this so much when she was born. And you know, you can make it happen. [00:04:13] Speaker B: I want to talk a little bit about that point. And you know, it happens. Any parent that has a child with a disability, at some point they discover that they have A child with a disability. So can you kind of step back and talk about how was this diagnosed and when you discovered it? [00:04:35] Speaker A: Well, mine is interesting because I thought I had given birth to a very typical child. And it was only by missing milestones throughout her toddlerhood that signaled maybe we needed to look into this more. And. And so at age 3, we went through a lot of testing and she was given a diagnosis. Now, remember, sign of the Times, this was 40 years ago, nearly. And her diagnosis was mental retardation. That was the clinical diagnosis at the time. And it. I received it in the mail. [00:05:26] Speaker B: Oh, God. [00:05:27] Speaker A: The wrong way to deliver that kind of news. [00:05:30] Speaker B: Yeah. [00:05:33] Speaker A: So I, you know, fell on my knees. I was shocked. I was crushed. I could hardly put one foot in front of the other. And in my daughter's case, there was no known cause for why she exhibited the symptoms of, at that time, mental retardation. Now we know it as developmental disability. The cause came later. At the age of 30, we had genetic testing done because her siblings were beginning to get married and thinking of having a family. And we just wanted to find out, is there anything new that's been discovered? And indeed, there was a new discovery of a very rare condition called cascade gene disorder. And this disorder interferes. It's on the cask gene, and it interferes with brain development and it results in intellectual and motor deficits. So we didn't know what her actual diagnosis was until she was 30. So we were flying blind all this time just dealing with symptoms. And her struggles, her early struggles were with motor and motor memory, which is walking and talking most of the time. Kids at very early ages, motor is the biggest part of their development. [00:07:02] Speaker B: Yes. [00:07:02] Speaker A: Even talking. Because small motor skills, the most complex small motor skills are in the mouth, are in the oral motor skills. So her motor was affected. She didn't walk till she was two. And even at that, it was a few steps and kind of toddling and falling. And her talking words maybe started at 3, and it was slow going. She also had intellectual difficulties just understanding things and remembering things that she. We had taught or gone over. And the antidote to all that when she was really little was just repetition. Keep on doing it, keep on doing it. Keep on trying to walk, keep on trying to talk and. And, you know, keep on trying to hold a crayon and. And color. And those were her struggles. My struggle in the early, you know, from age of three and going into school, my struggles were heartbreak. [00:08:25] Speaker B: Yeah. [00:08:26] Speaker A: Because it's. This is not what any parent wants for her. Child or his child. It's, you know, nobody wants this, but when it happens, you know, mother's love doesn't change. So you, you do what you need to do to make a happy life for this kid and, and for you. So, so I decided after, after several years of really being heartbroken, my dark days, I call those. I just decided, you know, you can't be sad forever. Turn off the waterworks. I told myself, this is not going to ruin your life. Don't let this ruin your life. And I want a happy life for myself and my child. Now I just need to figure out how to make this happen. [00:09:35] Speaker B: Right? [00:09:36] Speaker A: So it was really turning, doing a 180 degree turn. This is not woe is me. This is about, I've got work to do. And you know, the bright spots in this were she was progressing, she was making progress. It was slow, she was way behind her milestones, but she was making progress. And I was making progress by learning everything I could, learning everything about motor deficits, learning, you know, about therapies, just learning everything I could so that I could help her. And, you know, that's when things, you know, kind of started to turn for the better. [00:10:29] Speaker B: I want to just step back just a minute to ask you, because at that point, when you found out you had two kids, you had two more after her, were you worried? How did the topic come up that you decided to go on and have more kids because if you would have had another one with a disability, did you just think, well, it will happen, you know, we'll deal with it if that happens? Or what was the topic of conversation that happened between you and your husband? I'm curious. [00:11:02] Speaker A: That's a great, great, great question. It's such a great question. I wrote a story in my book about it. It's called should we have another baby? And for everybody, it's different for me. However, my husband and I did want to have more children and we didn't know what the cause was, so we were just completely flying blind. But we didn't see anything familial in our extended families. And there came a point where I needed to get my life in better balance. I was so laser focused on this kid that I. To the exclusion of lots of other things in my life. So I, I knew having another baby would force me to get a little better balance, have another child who really, you know, needed me, and I could, I could balance my life better. That's exactly what happened. So I had another daughter and she was, she's perfectly typical kid. And I treated myself to a fourth baby, another little boy. And it was the best thing we ever did, because the best gift we could ever give her is siblings. They have been a huge part of her life. But we did take a leap of faith. We were flying blind, but I really had faith, and it worked out. And it turns out that my daughter's condition is de novo, which means a fluke, random. It's not. It's not hereditary. So we were lucky. [00:13:14] Speaker B: It's so funny, every time I hear people talk about, you know, a fluke or something, I always flashback to that Forrest Gump movie when he talks about life being a box of chocolates. You never know what you're gonna get. And I think that's just like kids. You never know what you're gonna get. And that is so true. [00:13:34] Speaker A: And, you know, a friend of mine, a neighbor, came over when we had gotten this diagnosis, and he said something to me that really soothed me. He said, you know, Cindy, the difference between Noni and the rest of our kids, he had five kids. You know, what she's going to be dealing with and what you're going to be dealing with. All of our other kids are going to be going through lots of things. We don't even know what it is yet. But, you know, it's not just unique to her. All kids go through stuff. [00:14:18] Speaker B: Yeah. I want to ask you in regards to talk a little bit about family dynamics and siblings, because I know for a fact that it is not always guaranteed that your siblings love the one with the disability. There's sometimes anger there. There's sometimes resentment. Sometimes they don't. Or embarrassment. Sometimes they don't want to be around. Sometimes, you know, they feel like the parent is more focused on them and they feel left out. But in your book, you managed to. It feels like she's definitely loved. Noni is definitely loved. Her siblings love her. She loves them. And it feels like family dynamics, not that you never had any issues, but that they're pretty darn good. And I don't know that that's typical, but I'm wondering if you could talk a little bit about how you struck that, because I think there is work that the parents do to create a bond that you know or create the conditions for siblings bonding together. I wonder if you could address that and talk a little bit about maybe how. Was there any situations that you did kind of try to promote that? [00:15:40] Speaker A: It doesn't happen by accident. Some of it does. Some of it is just the kids that they are. But in in our case, my kids really loved their sister. You know, when they were really little, they didn't even quite, you know, especially the younger ones. She was a good playmate because she was at the same level they were, and they were, you know, quite a bit younger. So they, they did a lot of playing together, but. And they were all different. My youngest one just included her with. I mean, she could tag along with him everywhere he went, and all of his friends liked her and all, so that. But he's a really sensitive, sweet kid. Her sister, typical sister. You know, she wasn't going to cut her much slack. And there would be times that I remember my daughter saying, my other. Her sister Juliet saying, I shouldn't have to clean up her half of the bedroom. You know, they shared a room. I should. She should, you know, she should do this. She should do this. I, you know, I just lit into her, said, look, darling, what did you exactly do at the moment of your birth to earn all the talents and gifts God gave you? Brains, athletic ability, beauty, personality. I mean, I just, I just started going on and on about all these gifts, and I said, and what exactly did your sister do to not receive those gifts? Okay, now, the reason you're in this family, because God put you here, and you are, your role, is to be a special sister to your sister with special needs. So cleaning up both sides of your room for all. For everything you've been given is a privilege. And you can thank me, but, you know, the idea that my kids realize it could have been them. [00:18:01] Speaker B: Yeah. Well, I think it's so funny because you write about an argument that they had in regards to something, and it, it's so funny when I'm reading that because it's just like a typical sibling argument, you know, and it, it. That's what I think. That's what makes me feel like. Oh, they had really quite a, quote, normal relationship with her because it was very typical, you know, in, in many ways. [00:18:35] Speaker A: Yes. Especially the girls. I mean, they were, you know, Juliet would wear Noelle's T shirts and Noelle would have a fit and. [00:18:46] Speaker B: Yeah, yeah. [00:18:47] Speaker A: Pretty typical, you know, all of that crazy. And I would say there was one time my daughter, My Nonie said something and my daughter Julia said something was illogical. What you just said is illogical. Laughed at her. Like you're arguing logic with Noel. Think about this. [00:19:16] Speaker B: Yes. [00:19:17] Speaker A: And then we just burst out laughing. But, you know, the kids also need to be able to make fun of her. You know, they need to do things like throw cherry tomatoes at her at the dinner table when I'm not looking. You know, just goofy, fun, teasing stuff that goes on with kids. [00:19:36] Speaker B: Right? This is disability in progressfai.org oh, and we are talking about you taking a journey with us and Charlene, you know, everyone's got that journey they need to take to go to their phones. Well, now everyone carries their cell phones, like having a little chip in you. So pick up your phone and call 612-375-9030, or you can go to kfai.org and donate. As we knew. Did you. Did you fulfill your assignment yet, Charlene? Are you still working on it? [00:20:16] Speaker C: It's in my hand. [00:20:17] Speaker B: Okay. Do you have two reasons why people should donate to Disability in Progress or kfai? [00:20:27] Speaker C: Number one, to keep us Disability in Progress on the air. [00:20:35] Speaker B: Yeah, that would be good. That'd be good. [00:20:38] Speaker C: And everybody else's shows, too. [00:20:43] Speaker B: So there's a lot of. That's true. I guess there are shows, too. We have a ton of shows like. [00:20:48] Speaker C: You can find 24 hours a day. [00:20:50] Speaker B: 24 hours a day. That's right. You know, that is true. KFAI never sleeps. So stay with us and donate. 612-375-9030 or kfai.org we are speaking with Cynthia Schultz. Cynthia is the book about a child with a learning disability. And her book is called Shine On. And it really is about raising our kids with disabilities to lead happy and healthy lives. Cynthia, I know that, you know, divorce is really high to begin with with just couples in general. If you have a child with a disability, divorce rates go up in general. How did you guys stay together? What do you think was the magic or what tricks did you use to kind of anchor yourselves? [00:21:54] Speaker A: Well, my husband and I really took two different roles in each of these roles was our strength. So I just started researching and getting all the information I needed and advocating and doing all this, getting smart about this, doing all this work. And he was just Daddy. He said, I'm. I don't. Doesn't matter to me if she. He didn't take it as hard as I did, not nearly. He said, whatever. She'll always be my little girl. I'll take care of her forever if I need to. And this is the guy who takes her everywhere. She loves to go to Home Depot with him, and he loves to go to Home Depot. [00:22:45] Speaker B: Uh, oh. [00:22:48] Speaker A: But so he didn't fuss much and didn't worry much, and he absolutely 100% supported everything I was doing for her. So I lit a bit of a fire under him and he helped me chill a little bit. And we both really love all of our children and we, they are the center of our lives and we want to. Although they're the center of our lives, but we are the scent, we're the nucleus of the family. As I tell them, I said, no, no, you guys aren't. The family doesn't revolve around you. You guys revolve around us. [00:23:36] Speaker B: There you go. There you go. [00:23:38] Speaker A: Yeah. So that's how we've been able to, to do this. [00:23:45] Speaker B: At what point did you decide to write a book? [00:23:49] Speaker A: I decided to write a book when I retired. I retired just a few years ago from a 45 year career. I was in corporate communications and writing is my core skill, you know, and on the business side, you know, writing speeches and, and scripts and annual reports and all kinds of business writing. And when I retired, I decided I wanted to devote my encore career to this, to helping this population. And so I really, I thought about writing a book. I like to write. And what really prompted me was what I saw, the need for a book like this. I have met so many young families and I have been in their shoes and I have four decades of experience. And the stories that I feature in my book from so many other families who have all these years of experience. These young families can benefit from this. They don't have to start from, you know, behind the starting line, creating the. Yeah, yeah, we can give them a head start or a push or validate what they're thinking they might want to do. And you know, they need somebody to say, yes, do that. So I wrote this book to help families raising kids, raising children with developmental disabilities. [00:25:43] Speaker B: What. How did you decide what you would or wouldn't put in the book? As you say, you have a lot of years of experience. [00:25:52] Speaker A: Well, I decided that I did not, I wasn't going to write a prescriptive book. In other words, you know, do these four things. Here's a list of was not going to be that way. I wanted to write stories, you know, stories that had, you know, humans in them with feelings and, and problems to overcome. And, and so because you can remember stories and stories can really inspire you in the ways that, you know. And I, and I'm not, I'm not a professor of special education. I'm a mom. I learned this through experience and there's a lot to be said for experiential learning. So I didn't want to write that how to book and I didn't want to write A compendium of life stories like this Person, this Person, this Person. I wanted to write about aspects of life in families with disabilities. And so I decided on a collection of short stories that feature my family and lots of other stories. And it sheds light on the unvarnished life of, you know, of aspects of our life. You learn a moral from each of these stories and you decide what you take from it. And when I say aspects of stories, I can give you a couple of examples of headlines of stories in my book. What if my child never reads? Will she ever date? How to fit in when you stand out without words to tell you what hurts. Or good parents can have kids with bad behaviors. [00:27:52] Speaker B: Boy, do I know that one. [00:27:54] Speaker C: Yeah. [00:27:55] Speaker A: Yeah. Could your team use an extra right fielder? Finding purpose after graduation. And who wants to live with the parentals forever? So these are aspects of life that lots of families have dealt with. And there's not one size fits all. There's lots of ways to make these things happen. And that. That's what I wanted to show people. It's a very optimistic book. It's a very can do book. Each of my chapters actually ends with what I have termed. And it's just a couple of. It's just a paragraph. Optimisms to live by. [00:28:44] Speaker B: What was the hardest thing for you to write about? [00:28:50] Speaker A: The hardest part of writing a book is it takes a long time to write a good book. You know, you hear people say, oh, I dictated this book on my iPhone, and yeah, that's not a book I want to read. You know, I. I can. I can write a book in 90 days. That's not a book I want to read. I mean, you know, the thought, the deep thinking that goes into this to make it a whole and make sure you're covering all the different facets you want to cover and interviewing all people. The hardest part is how my. My. My. My dear mother would say, boy, Cindy, it's taking you a long time to write this book. Yes, mom. Yes, it is. Thank you. Because it does take a long time. [00:29:45] Speaker B: Do you have a favorite part of the book that you are just like either really proud of or that you really think speaks to what the book is about? [00:29:56] Speaker A: Well, you know, I'm not sure I would call it my favorite, but one part of the book that I think is so poignant is about history. In a chapter that I call thank youk to the Trailblazers, it starts off with a quote from Andrew Solomon's fabulous book, Far from the Tree. And his quote is this. In the early 1900s, words like idiot, empicile and moron were medical terms used to classify individuals with a wide range of differences. Can you imagine? Those were clinical diagnoses, those words. And in 1927, in our country, there was a Supreme Court decision and Justice Oliver Wendell Holmes wrote, it is better for all the world if society can prevent those who are manifestly unfit from continuing their kind. Three generations of imbeciles are enough. This was our thinking a century ago. And one of the Trailblazers in 1965 was the mother of a boy I wrote about in a story called who's Non Educable. So when Kevin was born in 1965, nurses covered his face with a light blanket in the nursery during visiting hours, the practice at the time for newborns with down syndrome. His mother rose through a fit, demanding they unveil him for all the world to see that cherub face of her child of God. This moment would be the first of many times Rose would stand up and shout out for her son. This was 1965. As a youngster, Kevin was automatically labeled non educable because he had down syndrome, which was another sign of the times. In colleges in the 70s, special education majors could choose from two tracks, EMR or NMR, short for educably Mentally retarded and non educable. Mentally retarded Words we cringe at hearing today who's non educable and who gets to play God and make such a ruinous decision. Thank goodness we now realize there's no such thing. And it is for. When you. When you understand the history. And that's not distant history. [00:32:53] Speaker B: No, it's not. [00:32:55] Speaker A: When you understand that recent history. It is so important for parents to keep fighting this fight, to keep pushing for progress. We have made a lot of progress. Inclusion has been huge. My daughter was the beneficiary of inclusion. She was in our state. I live in Ohio, our state's first pilot program for inclusion in a public school classroom. As a kindergartner, she benefited from being an inclusion student all through school. [00:33:32] Speaker B: You know, go ahead. [00:33:35] Speaker A: Such a profound difference. [00:33:36] Speaker B: You talk. I want to step into that one, because you talk about inclusion and you state in your book inclusion is not the same as mainstreaming, and you give some examples. And so I always considered growing up as a person with a disability that mainstreaming was good. So can you talk a little bit about why, what the difference is and why you feel like there is a difference? And mainstreaming isn't always what it seems. [00:34:08] Speaker A: Mainstreaming is good, but inclusion is now Better. So mainstreaming was blazing a trail in the 80s and you know, in 70s and 80s and 90s and mainstreaming worked like this. It cracked open the door for, let's say a fourth grader who's reading at a first grade level to learn to read by going to the first grade classroom for reading because he's reading at a first grade level, he goes to the first grade classroom. He's a fourth grader who wants to do that. Right. So inclusion opens the door for that fourth grader to learn to read in his fourth grade classroom at his own pace, with accommodations and with and among peers who often help in that process. [00:35:14] Speaker B: Yeah, I feel like I got definitely some benefits for, with the inclusion slant when I was getting help because I did get, you know, I mostly felt pretty included in my classroom. But I can see what you're saying. [00:35:39] Speaker A: But when you, when you take a kid like Kevin, who was not non educable was his label, he. There was not even a chance he could even go to any school. He had to go to a developmental center. So. But what I would say about mainstreaming and not this, it is not a negative. It was, it was progress at the time. That was progress and it led to inclusion. [00:36:16] Speaker B: Talk about some of the ways that Noni benefited from inclusion. [00:36:22] Speaker A: Oh, there's so many ways. She has so many friends, so many people at school who just loved her. She never got made fun of. She was always embraced and, and the kids. I. There are just so many examples. So for example, she always felt good about herself in the sixth grade. I think it was sixth or seventh grade. She was in an English class. Now she does not read. So why is she in an English class in the sixth grade? Because the English teacher wanted her. It, you know, inclusion was controversial still at that time and I didn't want to fight with any teacher who didn't want to have her in her classroom. So the English teacher wanted her. Great. She had an aide in her classroom with her. The aide would go to the library. The kids were reading chapter book Little House on the Prairie. Her aide went and got a children's book of Little House on the Prairie. And every day, so the class is going for a few weeks, they're reading Little House on the Prairie. And there were two beanbag chairs put in this room. One for Noelle and one for one of her friends who got to chosen each day. One of the kids in the class got chosen to sit with Noelle in the beanbag chair and read her her book. Her Little House on the Prairie. Children's book. Now, you know, kids, and Noelle's at this developmental state. She loves to read that book over and over and over again, and she needs repetition. And every time she. And they'd ask her appropriate questions and point this out and that. And. And these kids really got to know her because they're so sitting right next to her, reading the story and really trying to help her learn this. And. And then when it came time to. They were doing a biography. Well, she can't read, but she loves music. So she did. She did a perf. She. She did a biography of Gloria Estefan. She got up in front of the class and told them three facts about Gloria Estefan. She remembered three facts. And then they turned on the. And she dressed like Gloria Estefan, and they turned on the music and she sang. She sang her song to the class because she loves to sing, and she knows all the lyrics to every song. And the kids are just, you know, they're clapping. And it. It was fabulous. It was a fabulous way to accommodate her, make her feel part of. And the kids knew that she was performing to her best ability, and it was beautiful. So these are the. You know, this is what she takes from inclusion. And on the other hand, fast forward. My daughter Juliet and my youngest son, Trent, have two friends from school, two lifelong friends who both have children with a disability. One has three kids on the autism spectrum. The other has a child with cerebral palsy. She was born a microprenie. And boy, they will tell you they never knew inclusion was preparing them for parenthood to raise a child with disabilities. [00:40:20] Speaker B: Wow. I wonder if the kids, you know, you talk in that book about that and you talk about how the kids stood up and gave her a standing ovation because she did so well. But really, I wonder, you know, if the kids included her so well, because the teacher included her. You know, the teacher made her feel like she was part of the class. And because the teacher embraced it. Well, it must have been good, right? So the kids embraced it. [00:40:49] Speaker A: Absolutely. Great teachers are a godsend for kids with disabilities and go for the great ones. You know, if you're trying to include your child. My daughter was in a science class because this science teacher wanted her. He wrote a grant to, you know, learned how to include her. And I'm all, you know, this is science. My daughter can't read or write or pick a dime from a quarter, but she knows that fire comes out of a volcano. Wonderful. [00:41:27] Speaker B: Yeah. This is KFEI 90.3 FM, Minneapolis, and KFAI.org My name is Sam. And Charlene Dahl's here, too. And we're in the middle of a pledge drive. And this is. We're pretty much at the beginning, aren't we, Charlene? So show us the love, man. And go ahead and go to kfai.org it's on your smartphone app. Or you can go online to KFAI.org and give what you can give. It's all about giving. [00:41:55] Speaker C: Yeah. And if you in the neighborhood, just stop by. [00:41:58] Speaker B: That's right. I don't think anybody is going to deny your credit card if you walk in. Oh, by the way, I want to make a pledge. Okay. Come on in. And we love you. We. We. The show is here because of you people that come on this show and talk about things like Cynthia and all the other people we've had and cover different diseases, different disabilities, different things going on right now in the difficult, you know, political situation. We, we do it because we care. And we are hoping that you do, too. And if you're listening, you do care. So 612-375-9030 or just go to kfai.org it's safe and secure. And pledge what you can afford. And thank you. We're speaking with Cynthia Schulz about her book Shine On. And I'm wondering, Cynthia, you really do talk about the importance of standing up and advocating. And, and I can't say it enough. And it is, it is important because even as many years as I've been advocating for myself, you know, I, I always find people who act like they've lived under a rock for about 20 years and they'll just do crazy things or they'll say things that I'm like, did you just say that? It always surprises me. And I have, and I'm still learning because I have to advocate for myself. I don't want to swear on my show because I always tell people, don't swear, please. But I'm still learning to not sound like a witch when I try to put somebody sort of in their place or educate them. And it is really hard because sometimes it comes off as no matter what you do, you sound not as good as you'd like to. What are some of the things that you did to help yourself have composure when you were having to correct somebody who is just way where they shouldn't be? [00:44:29] Speaker A: When I was a young mom, I, I was, I started off timid, and I, you know, I was just grateful for what any professional, whether education, you know, healthcare, whatever, whoever I was talking with, you know, whatever they could do for Noel. And then I sometimes got some feedback that made me so angry and been there. And I. I say. I say, in my book, you know, sometimes it's really good to get pissed off because then you. Then you can, you know, steel yourself and speak up when somebody needs to. So, you know, when the neurologist tells you, have you. Are you familiar with a bell curve? Well, your daughter's probably over here. And it's like, not even on the bell curve. And I'm like, did you just say that to me? [00:45:38] Speaker B: Yeah, yeah, yeah. [00:45:40] Speaker A: So. And I once had somebody I had started a program for kids with special needs, and it was a little baseball program. This person we hired to do it calls me up and says, I don't think your daughter's going to fit into this program. So I say, you're calling me to tell me my child with a disability doesn't fit into the program for kids with disabilities. I mean, I'm so glad you're telling me this, because I am going to make sure you never say this to another parent again. I. You think because my daughter doesn't, you know, doesn't know how to throw or catch a ball. I said, if I bring you a kid in a wheelchair and who can't run to first base, I expect you to roll him down to first base and let him taste dirt. That's part of baseball. I mean, you help her to bat, you help. I mean, you don't tell me she's not good at baseball, right? So I had a safety town teacher tell me, you can keep bringing her, but I don't think she's getting anything out of this. And I got so annoyed with her, I said, that's probably why God gave her to me instead of you. So occasionally, I. I'm not always proud of myself. When I really did snap back, that wasn't the nicest thing to say to her. But you know what? Sometimes when it's really outrageous, and sometimes it is outrageous, what people have said to you, they need to be corrected. [00:47:23] Speaker B: You tell a little. You have a story that you talk about, and you talk about how you really went out of your way to try to make Noelle look fit in as far as, like, she had earrings, she had excellent, like, braids or ribbons or bows. And she. You. You tried your best to make sure she dressed nicely so she wouldn't stick out. But you have a story in there about a young boy who didn't have the means to dress well or very nice. And. And there were things that he did need for certain things. And your kids came home and decided they were going to take matters into their own hands. Do you want to talk a little bit about that story? [00:48:09] Speaker A: Oh, it's a great story. This. This young man was a bit neglected by his family, which was part partly why he just didn't have what he needed. And my two youngest ones just thought he was such a cool kid. They. They just. They fell in love with this kid, and he had nicknames for them and all that. And they said, mom, he. He really needs clothes. Can. Can we give him some of our clothes? Sure. You know, they. They got. Went into their drawers and got some extra shirts and whatever, and. And then they got their friends, a couple of their friends to. To donate to. You know, so suddenly this kid had this collection of. Of clothing at school. And then my kids came home and said, mom, you know, everybody's donated everything they. They could that he needs, except he's really skinny, so he needs a belt, and nobody has a belt that they can donate. And it would be really nice if he had, like, a jogging outfit. I mean, that would just be really cool. And the other thing, when we go to assemblies, it'd be really nice for him to have a pair of khaki pants because, you know, we need to dress up sometimes at school. So, you know, could we, mom, could you go buy them? I said, well, we can go by, you know, give. If. If each of you want to donate $10 to this cause, we'll go to Old Navy and we'll shop for what. What. What else he needs. And we did, and it was fabulous. And when this kid would go to. We'd take him to proms and things like that. He didn't have a tie. We'd get him a tie. You know, we. We. Because you got the. The kids wanted him to look cool. They didn't want him to look the way he had been. He was coming to school looking like. [00:50:11] Speaker B: So it's interesting because, number one, you don't always see people with. I mean, I think kids have the. The best ability to have a giving heart when they're young, because they are so. They're so new, you know, they're not hardened necessarily always to the things later in life and. But they don't always know how to give. And it feels like yours really had this idea of caring and giving, and I'm wondering how much of it was because they had already dealt. You know, they already had a sibling with a disability, so they understood the empathy and things that Kind of go along with that. [00:50:56] Speaker A: I taught my kids. I said, I said to them, one is older than Noel and they're two younger and the two younger when they were in middle school. And I actually, this my high school, my older son, same thing. I said to them, look, you guys are cool kids, okay? You're, you know, you're smart, you're athletic, all the. Okay, you're, you're cool kids. It really makes a difference if cool kids embrace kids with special needs like Noni. It matters because other kids will. Will do the same thing. If you accept them, other kids will accept them. So I expect you volunteer in that classroom or join that group, you know, at high school where the kids are mingling, or invite your friend with down syndrome to sit at the athlete's table at lunchtime. You know, that mean you, you gotta do this because you want this for Noni. And, and you're gonna, you're gonna love these. It's gonna be great. And, and that's true. You know, if you can my in the third grade. And, and it's not always just parents in the, in the third grade. My daughter had this fabulous teacher who said to me, I have a goal for her and it's going to be really hard. My goal for her for the year is I want her to befriend one child in this classroom who's having a lot of difficulty making friends. She's not always likable and she's trying to work on that. She needs somebody like my daughter Juliet, because other kids will be watching, and if she makes friends with her, other kids will too. [00:53:03] Speaker B: Ah, yes. [00:53:04] Speaker A: But it's gonna be hard. My daughter comes home, she tells me what her new goal is. She's like, oh, mom, this is gonna be so hard. You can do this. You can do difficult. And she got invited to this girl's birthday party and other kids did too. The point being, you know, that is a fabulous teacher who sees this happening in the classroom and makes it part of a student leader's goals, part of inclusion. [00:53:36] Speaker B: Yeah, yeah. Where can people get your book? [00:53:41] Speaker A: You can get my book lots of places online at Amazon.com of [email protected] at Books a Million and Book buy and lots of places online where books are sold. [00:53:58] Speaker B: The book is called Shine on. And it is a book about raising our kids with disabilities to lead bright, happy lives. Give me one thing really quick that you would piece of advice. You'd tell parents who just discovered they have a child with a disability. [00:54:20] Speaker A: I would say when you love someone with disabilities, you see perfection in a new way. Our children are perfectly imperfect, and it's loving them with all their imperfections that makes love unconditional and easy. And something you would have done anything to change turns out to be something, someone you wouldn't change for anything. [00:54:47] Speaker B: Cynthia, thank you so much for coming on the show. We really appreciate you and wish Noelle the best of luck. And I didn't even get to everything I wanted to ask you, but we. [00:54:59] Speaker C: Might have to do a second shooter. [00:55:02] Speaker A: Happy, too. [00:55:03] Speaker B: Oh, yeah. Are you writing anything else in the wings? [00:55:08] Speaker A: Not at the moment. Right now, I'm, you know, just trying to get the word out on this book, but now that I've written it, I'm thinking of all kinds of other things, so. Yes. [00:55:20] Speaker B: Well, good luck. Thank you so much. [00:55:22] Speaker A: Thank you. Sam and Charlene, it's been a pleasure. My pleasure. [00:55:27] Speaker B: Thank you. This is Disability in Progress, where we bring you insights into ideas about and discussions on disability topics. The views expressed on the show are not necessarily those of KFEI or its board of directors. My name is Sam, and I've been your host of this show. And Charlene Dial is my research woman, and Erin is my podcaster. Thank you, Erin. We were speaking with Cynthia Schultz, who wrote a book called Shine On. We talked about that book, Raising your child with a disability to be a. To lead bright and happy lives. This is KFAI.org and 90.3 FM Minneapolis. And please [email protected] Good night. [00:56:22] Speaker A: KPI.org.