Continuing a conversation with Steve Riggio, former CEO of Barnes & Noble, and his wife Laura, about the wonderful 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. In part 2, the Riggios discuss Melissa's life in high school and the often forgotten transition piece that starts before a student with disabilities graduates. College, employment, and independent living are discussed, along with inspiring examples.
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Continuing a conversation with Steve Riggio, former CEO of Barnes & Noble, and his wife Laura, about the wonderful 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. In part 2, the Riggios discuss Melissa's life in high school and the often forgotten transition piece that starts before a student with disabilities graduates. College, employment, and independent living are discussed, along with inspiring examples.
www.bornfabulouspodcast.com
Facebook Page: Born Fabulous Podcast
Instagram: bornfabulouspodcast
Twitter: @PodcastBorn
#BornFabulousPodcast
Hello. Thank you for listening today. My name is Greta 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 regio. His 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, the 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 on to Steven Larva Geo, our featured guests on foreign. Fabulous. Please enjoy this introduction song. Love is a potion. Melissa Regio wrote the lyrics. Rachel Fuller wrote the music and sings this beautiful song. Hello, my name is Gretta 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 part two of the conversation with Steve and Laura Regio. They are the parents of Melissa ratio, a shining star who accomplished more in her 20 years than 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 end of this podcast. She started a social group for her peers. She had the same dreams as their siblings and want it to drive, go to college, get married and have children. She wanted a life like yours less. It was taken from us too. Soon. In 2008 she had leukemia, but she graduated from high school fully included and received her diploma. She wasn't continues to be a role model for many, including my family. Her family continues her legacy. There are four episodes. I hope you will hear them all. The radios have made great changes for all of us and continue to brighten our world every day.
Speaker 2:And so tell me about Melissa's highschool years. Well, her high school years were good. Um, we, Melissa Love to swim and you know, she grew up doing all the things. Her sister's a high younger and her oldest sister did. So she took tap dancing and ballet lessons. She was in all the recitals. Um, yeah, she, she joined chorus, uh, at every stage of the public school. She loved to sing. She took horseback riding lessons in the summer and she wanted to learn to swim really well. And so we gave her swimming lessons with a man that was a navy seal, so she far surpassed and that he had wanted to someday to actually teach her to, um, to die with an oxygen tank and a mask because she loved being under the water. She was like fearless and determined to learn all the strokes. So for high school she said she knew my oldest daughter Laura had been on the swim team. And so I knew that would be like a good way for how to segway in and get to know other kids and the accepted. So, you know, we said that we were going to apply unbeknownst to us at the time, the summer before a whole big discussion took place at the high school because this had never been done before. No child with a disability with down syndrome was ever on the swim team. And so, but we said that we wanted her on it and it was, I guess they decided and we're told that she would have to be included in it. And so it just turned out that her coach was like amazing. He just really, um, I don't know, enjoyed having her on the team. The other kids enjoyed having her on the team. You know, the first year she was on, they were at like at some neat and there happened to be pressed there for, for like the other team. And at the end of it they came over with us and said, you know, we see your doors to swimming. We'd like to do like a story about her. So in, uh, I think it was, it in the star, a New Jersey paper did a feature of her, um, about being on the swim team and they integrate with the coach, I guess some of her friends on it and her. Um, so she was thrilled. Uh, so that was a big part of her like social, um, network. Uh, but then she also, uh, what else did she do in high school? Um, she started to, oh, she had told us when she was 15, she wanted to have a trainer start coming to the house to train her. And so as a birthday gift we gave her a trainer. So she got very into health and exercising and eating right. And she met a young woman that actually also worked in the y name Amy. And uh, they started up a friendship. Uh, Amy would take at the mall. They would do all different things and I, Melissa could just belts, you could really just be herself with her. She could be silly and crazy and Amy could be just as silly and crazy, even though she was, she was a little bit older than her. And so, uh, through school, they in junior year they do a program where you go out into the community and you get a chance to work at in different areas. And so she had worked at ADP gap. She had worked in Barnes and noble, um, uh, a preschool and then the local y yes, she runs sometimes to my classroom and reads a little kid, which was always a great day. I loved having her there, but she actually worked in the why through that program so that when that program ended after uni or they actually often her a job, which she continued that until she was sick. And then even once she got into remission, she continued until she got sick again. But um, so that also helped her, her social network. I won't say it was all easy in high school. She really became aware of, I guess within herself of being different and not wanting to be different, wanting to be a fully accepted. And I don't even think it was at the kids were not socializing with her because they were great with her. She was invited to different parties and sleepovers and things. But I, I just, you know, I think for a normal team, it's very teenage years are very hard to find the group that you fit in with and then you see other people dating or doing things that you want to do. So she struggled with that but got through it and um, I dunno, I think had a pretty good, uh, you know, high school experience. But she also wanted to, when talk and junior year came up of applying to schools and, um, going to college, she had wanted to do that and I really did get the feeling from the other, the teachers that they just had no clue about that and didn't think that that was possible. And I thought that we were crazy for even imagining there could be a program. And so we began to, uh, network with, uh, one of the organizations were active in with, for people with disabilities, the National Down Syndrome society. And we help start two programs in New Jersey. One at the College of New Jersey and one at Mercer County Community College. Both are still in existence. The program at the College of New Jersey actually started a few years ago. Dorming component, which we really were, you know, in the beginning telling them that that's such an important component. You would really like to see that added. And it was, we began to
Speaker 3:think about Melissa's post high school years pretty early on, right. So, um, and we became aware that the public education system is responsible for, for educating a child up til 21. I mean, they can actually stay in high school until 21 years old in New Jersey. And it turns out that that is an option that many parents take, take advantage of it were, let's say, fall back on or are resigned to. And the fact remains that, you know, a young adult of 20 years old really shouldn't be in high school. And while many, many schools have become progressive in inclusion, um, I think it becomes more difficult in high school because of the needs to adapt the curriculum. And being in high school at that age is kind of another world for an individual with a disability because they're not with their age appropriate peers. Uh, they're there if they stay. It's almost like a, um, I dunno how to use the term, but it's just not a good place to be for, for an adult. That young adult that sees their peers move on, there's thing behind and they're not really getting the right support. Right. So, so we, so as Laura said, we decided to, um, and gauge the National Down Syndrome society and a group of educators and professionals in New Jersey to frankly is you simply explore, could a program be conceived, developed, piloted. The idea was to pilot a program. And fortunately, as Laura said, you know, we, we've got, we did work, we worked about two years on a development program and it took off and it still exists in those two schools. And then shortly thereafter, the Association for the help of retarded children started the Melissa Riggi all higher education program and that is going to celebrate its 10th year anniversary this year for four cities, two in New Jersey for an HR person in
Speaker 2:Manhattan, one of the docs. Oh, okay. Okay.
Speaker 3:Okay. That's, that's quite right that, that's just quite a legacy.
Speaker 2:I know when we had first started thinking about Melissa going to a post secondary program, again, we had read about different programs. I run thing was 60 at the time across the United States, but nothing was here in New Jersey or even New York that we could try to have her attend. And so that's really how, you know, we started with the first two, uh, high level crimes in Jersey.
Speaker 3:So much of the disability movement over the last, say, 50 years, it's been geared towards first care. MMM. Taking care of individuals who need assistance ranging from every type of disability from the time they are born, all the way through their lives and care for them, care for their parents and family to provide services, uh, residential services, guardianship services, respite services. Um, and of course the inclusion movement has been very important. Um, in addition, everyone is well aware that many, uh, workshops and supported employment programs have exist nationwide. But this little, this piece of a person's life after high school is something that wasn't being paid attention. Two. And the great thing about this, and our intent was to open another door for these kids, not just for their intellectual development, but to make them more fully integrated into society and to give them jobs, right? And to give them jobs and to make them employable and desirable by employers. And I think when we started, there were 70 such post secondary programs throughout America of all different types. And I believe that number is in the hundreds. I don't know the exact. And from Dave one, Laura and I said, well, we know that we could okay, start a program. Um, but, and get it off the ground. What are most important wish was to inspire others to get programs off the ground. And I think that's probably been the biggest impact of the two programs that exist that we were involved in, is that they provided inspiration to people all across as to what is possible. And the great thing about these programs, one of the great things about the programs besides seeing, uh, the graduate saying throw their hats in the air, uh, on graduation day is the effect that has had on their fellow students. The mentors that work with him and the professors whose lives are immeasurably enriched by nurturing these students, befriending them, um, and becoming aware of the human potential in all of our children and how important it is to have a diverse employer, listic society. We're all members who given the opportunity to achieve their full potential. And as I always say, it was, let's say Tim Shriver always says this is the great unfinished business of the civil rights movement is to bring all people with all walked through all walks of life with all disabilities as fully as possible, integrated into society and this college is postsecondary program is one of those little cogs. Hopefully that we could make a little bit more progress towards that goal. That's wonderful. And you go to the graduation fits you insinuated, right? Yes. We've been to two at the College of Staten Island and we've been to, I think that one at the College of New Jersey. I haven't been to any at the the mercy county site, but that parents come up to us and just hug us and saying, you don't know what you've done for my child. You know when they came to this program, they weren't so shy and introverted. Look at them because the students actually have to do a project when it be that they're graduating and so they get up and they explain like a little bit about their project and you just see how much they've grown and blossomed. I think they find jobs for all of them. And then, um, one of the graduates last year, I don't because it's a mixed group. It's not all children with down syndrome, the, it's all different disabilities. But, um, one of them is going on to live independently, uh, I guess in January. So he's all excited and we had met him and it's just wonderful. I mean, I just, um, I'm just so happy for them. You know, I'm sad that Melissa it didn't get to do those things, but I'm happy to see that other children able to,
Speaker 2:um, to go on and really live arch, tall, independent life as independent as they can be. I think you're probably aware of, this is perhaps more than us in terms of the studies that have been done, uh, from elementary school to middle school to high school. When students are, um, alongside other individuals with disabilities, developmental disabilities, they'd grow, most of them grow because they see that embracing people from all walks of life makes you a better person. And that's something that, um, certainly is, um, say a byproduct of this inclusion movement that people initially didn't, didn't recognize but, but is in fact been proven exactly right. And I often say now that if all our high schools or schools would be fully inclusive, we would have much kinder kids growing up. You have less of the issues that we're seeing with outsiders. And I know we would have less of that. So thank you for that. But you gave a great segue into what follows that which, which is the most origio residents living independently. Let's go there. You know, um, when Melissa graduated, you know, before she got sick and then even after she got sick, but then was, well, she had said, you know, I want to, because I have a friend, Amy had her own house. So she said to me, I want to have like a house in basking ridge. You know, when I'm older like Amy does, I want to live alone. So I had said to her, well, you know, like screw, when we broke down like the different subjects in little chunks and you attack each one to, you got through all of them. I said, I think we need to put this in steps. So you know, maybe eventually you will live like try living on your own. We have an apartment over the garage that has, it's like a separate entrance. I said, and then if that works out, then maybe we can try like an apartment and then see how you do. And if, you know, maybe eventually we'll get you a house. Which she was like real. And I really meant that sincerely. You know, I saw that in her future that she, you know, didn't want to always live at home with us and I wanted to be independent. So, um, when she passed away, I remember riding home from the cemetery and passing like a new home that was going up and saying to see, gee, you know, Melissa really attained almost all her goals. She, I wish that she had gotten a chance to live independently. And when I, you know, when we looked at the house, he had said to me, you know, maybe should think about, you know, maybe starting like a, a group group home. So I had told her friend, Amy, and she said, it's funny you would say that, but the y a couple of years before and old doctor's family donated his house and it had fallen into, to the y and it was just like left. So when a fallen into disrepair, so the y was thinking like what they would do with this house. So we went to the y and you know, talk to them saying that he wanted to start, um, you know, a house for, you know, people with disabilities to live independently, but the overseen. And so, you know, we decided that we would make a donation and, but that house would be knocked down and on that ground we would build this Melissa regio residents. And so, um, know how many years is in existence now? Like five or more. Um, it's a wonderful house. Uh, the way it's set up for people live on one side of the house, um, that need to be, um, you know, like part of logo for it at the higher level of support. But then on the other side of the house, there's two kind of many, uh, Paul Whiteman Independent that the people are independent. One is able to drive, they can drive herself to work. Uh, the other one I has someone taken to work. Uh, so this would be a good situation. As it turned out when they all met the two people that live on the more independent side love the people on the other side. So they all eat together, socialized together except during the day, you know, um, those two are independent enough to go off to their jobs and the other four have jobs but are, are taken, you know, a bus comes and takes them to where they're going or whatever they're doing. So I don't know if it's really wonderful when we know how difficult situation as a crisis, residential housing for people with disabilities in America. It has been, of course was for some time. Um, and there doesn't seem to be a solution in sight. The backlog and individuals needing places to work in many cases is years if not decades as we met. Um, we were fortunate to be able to provide the moons to, to build the house. But what was most, um, inspiring and encouraging and amazing about it was that everyone in the community contributed in some way. A decorator's offered their services, landscapers that the job is provided for free. Um, local kids went and built things for the house. They built bird houses
Speaker 3:and you know, around the property. Um, it was a, it was a, it was a true community effort. I think there were some 90 volunteers, the ultimate plans, people contributed furniture, televisions, all kinds of things to the house. So it, it's, it's, it's a, it's a home. It's not a house. It is a home. The people who live in the home can actually go out and walk across to the y and use the facilities whenever they like to. It's like an open door policy. So that's wonderful too. And then people exercising in the y all the time will come up to me and say, Gee, we see, you know, people working there now. It's so wonderful how everything has grown. So, um, you know, we're very proud of it, but it's amazing how parents who advocate for decades for network and find creative ways to address these problems. We've heard of rights in other states for kids that are friends. They get together. They either buy a house or pay for the apartment and you know, those four kids live together. Um, so, you know, uh, you know, where we're hoping maybe otherwise would we think about this or it's not starting a group home at least, you know, employ people with disabilities in the y, you know, our local, um, embrace this project that to such a degree that we were, we were overcome by their, their support for it. YMCAS around the country is so tightly integrated and knitted into there. It just turned out to be a great, great partner for us and we just thank them for all that they did and continue to do for those kids. And yes, as Laura said, we hoped it to be like the college program, something that would be non catch on. I'm not sure how much of an example that provided, but, but it certainly was intended to be, um, kind of suit of an idea for others to copy. Well, you know, I, I also see this as you being the perfect example of making the world that you want to see. You're making the changes that you want to see. You're doing it yourself and we all have to do that. If we all do that, think of how many more improvements we could see. So I'm so inspired by everything you do. Hello. Thank you for listening to the second episode of born fabulous. I hope you enjoyed it and want to hear more. This episode was the second and for speaking with Steve and Laura, would you to see more about the ratios, including photos and videos? Please go to fabulous podcast.com
Speaker 1:you can also subscribe to born fabulous and send feedback. Now enjoy this clip of the ring lyrics by Melissa regio music and singing by Rachel Fuller.
Speaker 4:Yes.