Part 3, Interview with Steve and Laura Riggio - Discussing Melissa's Accomplishments, Best Advice Received, and More...

This is the third part of a conversation with Steve Riggio, former CEO of Barnes & Noble, and his wife Laura, a retired educator, about the inspiring life of their daughter Melissa. Melissa was a published author, self-advocate, and role model. She happened to have Down syndrome. Melissa passed away in 2008 at age 20. The Riggios discuss some of Melissa's better known accomplishments in writing, including her lyrics to two songs. Social highlights, their wonderful family, and the best advice they ever received are also mentioned. High expectations, increasing awareness, and breaking stereotypes are evident throughout Melissa's life and are still part of her legacy. 

www.bornfabulouspodcast.com
Facebook Page: Born Fabulous Podcast
Instagram: bornfabulouspodcast
Twitter: @PodcastBorn
Threads: bornfabulouspodcast
#BornFabulousPodcast

Transcript

Speaker 1: 0:00

Okay. Hello. Thank you for listening today. My name is Gretta Harrison and I'm the host of born fabulous. As a preference for today's podcast, let's discuss labels in terms Steve and Laura Riggio's daughter. Melissa was born in 1988 and passed away in 2008 during this time, the term mental retardation was used. I know because my own daughter who is now 18 had this educational label when she was young. In 2008 it was changed to intellectual disability when Virginia started to change its laws. In 2012 the federal government enacted legislation changing the term mental retardation to intellectual disabilities in all federal law despite being urged to quickly replace all references to metro retardation. The change was gradual and varied state by state. Many nonprofits use the term mentally retarded as part of their name. Please keep in mind that historical context when listening to this podcast and now onto Steven Larva. Riggio our featured guests on born. Fabulous. Please enjoy this introduction song love. As opposed Melissa Regio wrote the lyrics. Rachel Fuller wrote the music and sings this beautiful song.

Speaker 2: 1:37

Nah.

Speaker 1: 1:59

Hello. My name is[inaudible] Harrison. Welcome to born fabulous. The podcast where we speak with parents, families, and accomplished individuals who just happen to have disabilities. You're about to hear a part three of the conversation with Steve and Laura ratio. There are the parents and Melissa Reggio, a shining star who accomplished more in her 20 years, the many doing a much longer lifetime. She was a published author and wrote the lyrics to two beautiful songs you hear at the beginning and the end of this podcast. She started a social group for her peers. She had the same dreams as her siblings and wanted to drive, go to college, get married and have children. She wanted a life like yours. Melissa had leukemia and was taken from us too soon in 2008 but she graduated from high school fully included and received her diploma. She was and continues to be a role model for many, including my family. The regio family continues her legacy. There are four episodes. I hope you will hear them

Speaker 3: 2:59

all. The ridges had made great changes for all of us and continue to brighten our world. Every day. Let's start with the article she wrote for National Geographic kids. Can you tell me the story about that? What, what, what inspired that? How did that happen?

Speaker 4: 3:16

Well, Melissa grew into her teenage years. Um, became a, why do we respect itself? Advocate? Um, I think that article was written after her songs.

Speaker 3: 3:33

I'm not sure. I'd have to go back and look at the dates, but, um, I think how she ended up like, I think, I don't know if it was HRC or Ndss, I guess National Geographic had wanted to do a story and DSS, they wanted to do a story on someone, I guess with down syndrome or with a disability. And so they contacted NDSS do they know of anyone who, you know, they felt would be willing to do that. And so they had called us, we ask Melissa, you know, this magazine that's for kids wants to do an article on, you know, someone with down syndrome. Is this something you would like to do? And she said yes. And so we met the writer and, uh, she came to the house a couple of times and interviewed Melissa. She actually went with her one day to school to see what her schedule was like and you know, what her interactions daily war. Right. And then, um, I mean, it, it's a beautiful article. I mean I feel like mostly just cut to the chase and just said, uh, you know, know me before you judge me. And I just feel like all people with disabilities or people that are in different in any way would stand behind that. Um, I think when something is new or unknown or different people kind of, some people get really nervous and I'm not, I'm suspicious of it. They don't know how to deal with it. But given a chance, um, people with disabilities and this article shows it are just like you and me, you know, are named Melissa had all the same hopes and dreams that assist is, did she enjoys all the things that other people do. Horseback riding, cooking, swimming, um, you know, dancing, listening to music, singing. Um,

Speaker 4: 5:23

well, when, when the article was published, it was such a revelation for so many people. Um, and I think it was the first time that national geographic has have done something like that. So, you know, we had held, uh, hundreds of events in Barnes and noble around that article. No, me before you judge me, where, uh, the article would be read at a story time during the day and appearance and the place was filled with parents and children, not just with disabilities but all kinds

Speaker 3: 5:57

of, and they were, I think the most successful events we ever did and the competent ever. But, um, as, um, I think we're going to talk about her music. Yes, we are. That, that'll be that you wanted that segue there. Let's go there. Talk about her music. Well, in high school and Melissa began to love writing, writing about her feelings, um, writing about things that she was thinking about. So, um, you know, she started writing and then eventually she said, I, you know, I want to write songs, meaning the meaning of the lyrics for the songs. And so I think Steve, you had had dinner with Melissa and Lauren. I would look at the words and we're just astounded by her ability to express herself in such a poetic way. And one day I was having lunch with Pete Thompson of the Ho who's, uh, as you know, a famous musician and the friends of mine. And I was telling him about our family and about, and Alyssa and he said, why don't you send me some of her lyrics or poetry or her words, her words and her writings. And, and at the time he was with his partner will ultimately became his wife and he read them and he said, um, Moses, a poet, these words were amazing. He gave them to racial fuller is his partner. And, and Rachel said, I think I'm going to put some music behind them. And it wasn't. Shortly thereafter, um, a CD arrives at our home with a recording of her first song, the ring, and it was just amazing. We put it on in our family room and we will all around. We were like blown away by it. And Melissa was like so amazed. Well, she was so amazed, but then she looked at me and she said, you know, dad, I wanted to sing it. So it just shows that how much ownership she had to her own words. And then Rachel went on to record another song with cars, but he did get a chance to sing it. And she did. Yes, we were in the store. So we had some activities planned and we were there as a family. Rachel came, Pete Townsend, Kane and Richard played the piano. They actually sang it together. First of all, Wilson was like really shy about it, but then she just ruin self into it. And then by the end shining cds.

Speaker 4: 9:09

Yeah, yeah. As a young teenager, I became completely, uh, in love with the music of the WHO and Pete Thompson, who is a titanic genius and one of the greatest songwriters of the 20th century. And for him to tell me that my daughter is a poet, our daughter is a poet. Um, some 30 or 40 years after I first heard his music was, uh, I guess one of the most amazing things about my life. And to see her words acknowledged by him as being brilliant and then recorded by someone. Uh, and many people have told us over the years how moved they were by her words. Um, uh, Paul Simon told me once that the words were other worldly. So it's quite, it's quite, um, amazing and it's never quite sunk into me, frankly, of how, uh, how much talent she did have. And sometimes we, we looked through her writings as we have the year and it, it, it, it sometimes breaks, brings to my mind what could have been, um, of what more she could have done. Um, but it was a, it was a wonderful moment in her life. It was a wonderful time for our family. Uh, her, her sisters, Laura and Christina, uh, who we haven't talked about yet, um, are beautiful and talented and fantastic young women now. And their lives of course have been touched by having a sister with down syndrome. And you know, having been proud of everything that, uh, their sister ha has accomplished and it, and of course it's difficult for me to know what it's like to have a sister with down syndrome, especially what it's like to have a sister that one has lost to have, you know, that had down syndrome. We are parents and we have that unique perspective. But our daughters, um, have something inside them that I guess we can't explain because that's only what they know.

Speaker 3: 11:51

Yeah. I mean they were, as Melissa was growing up, they were wonderful sisters. Um, I had decided when we had Melissa that I wasn't going to name what she had to Laura, I kind of just said, you know, Melissa is going to have to go to school earlier than you went because you know, she needs extra help learning thing. She'll learn everything you do and we'll do everything you do, but it's going to take her a little longer. So we're going to put her in like a program where they will help her. And that was fine. And then, um, you know, Laura and never questioned me about it. She just fully accepted her and loved her. And my sister, it was like really important to me that she said her just as her sister before you introduce anything being different. And so when she was about five, I had come across a really nice book that kind of explain down syndrome but in simple terms for siblings. And so I had read it to her and then I remember when she was like six in first grade, her saying to, I don't know, one of her friends said something about Melissa and Laura Goes, she has, I think the book said there's 46 chromosomes. And she said she has 43 chromosomes, but she's going to do everything that we do. And I remember like last name but being so happy that you know, she didn't know the exact term or how many chromosomes she had, but she, you know, was advocating that she can do everything you and I can do. And you know, Laura always included her with her friend she was doing or, and the same with Christina. Well, Christina, I feel it was a little bit harder because as Christina got to be a teenager, you know, she started to, I don't know, be a little bit older and listen would say I don't want her to just coming into my room, she can't tell me what to do and the oldest system. So it was like a little bit hard at times to Christina and you know, I felt bad about that. I didn't want her to feel bad or, but you know, in certain circumstances she, she knew what the, what the better thing to do was. Then Melissa was saying to do. So it was a little sticky. But we got through that photo, sir. That's, they were sisters. They were just, that's normal. Obviously. We've talked a lot about, or children with disabilities because we come from a big family and because we just included everything, listen, everything that we did, I don't know if there's been studies showing it, but um, she got a lot of stimulation. This is a family that talks a lot, lots of parties, lots of

Speaker 4: 14:52

family time together. Um, lots of singing and talking and loud music playing, um, you know, traveled a lot. And I, I have to say, um, Melissa not only read at a fourth or fifth grade level, um, she spoke very eloquently.

Speaker 3: 15:15

Her diction was amazing and I think that has a lot,

Speaker 4: 15:21

my feeling, my opinion

Speaker 3: 15:24

is it has a lot to do with the fact that she was just surrounded by so much activity and talk and stimulation of every possible time type. And it had to have an effect. I had to, because remember, you know, if we, if we go back 30, 40, 50, 60 years ago, kids with Down Syndrome were institutionalized. No, and they, they were, they were separated in if not outcast. So, you know, advice to new parents include your children in every possible thing that you can and don't ever, ever put a limit on what you think they can achieve. Because at every stage of her development, Melissa exceeded our expectations

Speaker 4: 16:16

up till the day we lost her.

Speaker 3: 16:21

She always exceeded expectations for sure. For sure. Well, I must, I must say, let's talk about when she was prom queen. Can we do that? Yeah. You know, it was really, um, amazing. She, you know, in her senior year, from February on, she was in the hospital undergoing a six months of chemotherapy, really strong chemotherapy that she had to, we actually lived in the hospital with her each round, I dunno, lasted a couple of weeks. And I think if her counts were good, we could go home for like a week. But if she ran any kind of fever, meaning like a hundred, we had to run back and she would have to, you know, stay in to make sure she was okay. But with the prom coming up, she had wanted to go and she had wanted to take my, one of her cousins, my cousin Keith, who's very handsome, and she said, mom, I'm going to ask cousin Keith. So I said, okay, you know, asking. And he said, you know, I'd love to go with you. And so, um, all the nurses at the hospital were all excited and, uh, behind her for it. So they actually made a giant calendar with the countdown to the days to the prom. And, um, at, at one point in the treatment when she was feeling good and we were home, I had said to her, doctor, could I take it to the mall? I'll go early in the morning when the store first opened so there won't be a lot of people with germs around, you know, she'll wear a mask, can we go look for her, her gown. And so we said, you know, sure, just be careful. And so we went one winning and she tried on a few gowns and she picked this beautiful yellow one. And I was like, Yellow Melissa. She goes, mom, I just love it. So we um, I wrote it to a dress maker in our town and we devised a way to gate, I actually bought two copies of the dress so that they could make like a little on Dan to cover her spot where she got her chemotherapy and then a headband because her hair had like been doubt. But I had a beautiful piece that we could make her hair up. And with the spanned she looked like she just had her regular long hair. She was like, just so excited. And in leading up to that, she goes, I really wish I could be prom queen. So being her mom, I was like, oh, Melissa, you know what? Every girl wants to be the prom queen. I said, but honestly, you know, the kids have to vote on it. We didn't, you know, I, I just said, you know what, you have a chance. Like everybody else, I don't know. And then we just moved on. We were in shock when she, Oh, actually we knew the day, that day of the prom, one of the teachers that Christina was said to Christina, I want you to tell your mom that Melissa was voted to be on queen. It's this, you know, like it's a secret. It's going to be announced with the king, you know. And so it was amazing. They took all these pictures. She came home like with the crown. Um, she likes, slept with it for like a week or two. It was just amazing at what was amazing to us is we didn't ask anyone. We didn't suggest it. It literally, many of them visited hard. They said posters and little gifts to the hospital when she was being treated. So, um, you know, she did feel that support. And then one other thing about that for Melissa had always liked to do like service. So while she was in the hospital, she said, mom, you know, what am I going to do? I wanted to get like an award for service. So we talked to the social worker and I told her, she goes, she needs service, we'll give a service to do so when people come in and are being treated, they put these binders together. So she actually correlated all the sheets into the binders and earned while she was undergoing chemotherapy and sick a lot of the time she earned all these extra hours of um, for service. And so, you know, when a few days before graduation she missed the senior luncheon, but they had some other thing that she came to and the principal gave her her would, all of the service. So that was one in the fall. Wow. When, when she, when she was named Prom Queen. Where you there? No, no, no. And only, uh, you know, my nephew from the limousine and she must've been over the moon. It was a big deal. Please tell us about the snap program that she started when Melissa was in high school. Like I said, high school is a hard time to really, um, you know, sue socialize and be invited to like all the different things that kids do. So she felt that she wanted, I don't, I don't know, to help start her. Amy started in the y this a special needs adult program where once a month they would get together and plan like parties, all different activities and they opened it up. Um, you know, and at first there were only, I think 10 or 15, not like teenagers with disabilities that joined it, but over the years we're still involved in it and it's over 50 now, 50 kids and they socialize like your and party just like your other, your teenagers. Uh, it's a wonderful program and more things like that are needed. I feel like, you know, up through, once they get out of school, it's almost like you're dropping off a cliff because other kids are going away to college. You, you lose, you lose that network. You had more programs. Like these are needed, you know, whether your child goes to postsecondary or not, especially if they don't, there's nothing for them. At least that was our experience. So this really kind of fills in. It fills in a need, but it was her idea to do it. What was the best advice you ever received? Um, the best advice I ever received or what are the Association for the help of retarded children were actually shortly before Laura and I met with one of the most important members of the staff in[inaudible] 92. And actually before I joined the board, Laura and I met with him and he said, listen to the parents, not the professionals. And I think that was good advice. I think also, uh, in looking for things to read, uh, several people said to me, you know, read but don't read anything that was published years ago because people had such a limited idea of what people with disabilities could do. And so I was really mindful of that when I was like reading. Um, another thing when Melissa was first born, um, someone that does a lot of, um, like work with, uh, people with down syndrome babies, especially a doctor said if you can give her extra speech, you know, I would recommend that she told us that Melissa was maybe like one years old. And so we always gave her like extra speech in our house. Um, yeah, those early years, early years, early weeks, months. I think Lauren recognized immediately that they were so important and I certainly can't prove what we did was effective, but you know, in specific, but I, I believe it, I believe that because we started her off for two weeks old and gave her all those extra services that we both fourth for as well as had the good fortune to be able to afford, um, made a big difference. I never really, once I knew that's what she had, I kind of never treated her like she had a disability. I was aware, you know, like her, her limitations, but I just treated her like I treated Laura and then Christina when she was born and our families, I would say to them, just, you know, I remember my mom early on saying, Oh, you know, I'll watch your but do I have to do anything special? And I was like, mom, just love her as your grandchild way you learn more and there's nothing special you have to do, we'll take care of that. You just love her as a granddaughter. And everyone in our family did that. I had come across a report that one of my nephews route and um, for Martin Luther King Day, they had to write about someone who inspired you. And so he wrote about Melissa and he just like started saying, my cousin Melissa is this mom. She's done this, this, this, and at the end, why am I telling you this? Because she has down syndrome. And that's how it ends up. Like the article was like, so like wonderful and inspirational and then at the end, and he got it, he said, and she has down syndrome, you know, like that's how we wanted to be raised and how we wanted people to see her. Tell me something about Melissa that took your breath away. I think a lot of things did. I think just her determination, uh, like a spirit. Um, I thought she physically looked beautiful. She had beautiful hair, uh, less.

Speaker 1: 26:44

She's so loving and so honest, uh, with her feelings. You know, whether she loved you or didn't like you. She was like honest and to the point it was like, no, I'm skirting the issue. Um, I don't know if she was breastfeeding breathtaking me. She was breathtaking to me and I never got to meet her. She, she definitely was. She always, she was. She was. I think I've told you this, the first role model that we had. So we thank you for that. Thank you for listening to the third episode of Porn. Fabulous. I hope you enjoyed it and want to hear more episode for the last one in the series with Steve and Laura Regio. We'll touch on a variety of topics, including where Melissa is featured in history books. To say more about the ridge yos including photos and videos. Please go to born fabulous podcast.com you can also subscribe to born fabulous and some feedback. Now enjoy this clip of the ring lyrics by Melissa regio music and singing by Rachel Fuller.