Part 1, Interview with Steve and Laura Riggio - The Complexities of Inclusion in Our Educational System

An in depth conversation with Steve Riggio, former CEO of Barnes and Noble, and his wife Laura, about the amazing life of their daughter Melissa. Melissa was a published writer and self-advocate who happened to have Down syndrome. Melissa passed away in 2008 at age 20. In part 1, the Riggios discuss Melissa's life from birth through elementary school. They give an honest parent perspective of issues that are very relevant today, from the professional delivery of a disability diagnosis at birth, to the complicated reality of including a child with an intellectual disability in school. 

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Transcript

Greta Harrison: 0:00

Okay. Hello. Thank you for listening today. My name is Greta Harrison and I'm the host of Born Fabulous. As a preface for today's podcast, let's discuss labels and 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 mental retardation, the change was gradual and varied state by state. Many nonprofits used 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 Steve and Laura Riggio, our featured guests on Born 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.

Rachel Fuller: 1:19

A clip of'Love Is a Potion' plays.

Greta Harrison: 2:00

Hello. Welcome to Born Fabulous where we go behind the scenes talking with parents, self advocates and families of accomplished individuals who have disabilities. Today I'm talking with Steve and Laura Riggio, the parents of Melissa Riggio. Melissa Riggio was a beautiful young woman who loved her family and was a beloved member of her community. From an early age she had a determination to live a full, meaningful, and productive life. She attended regular classes all her life, and graduated with a full high school diploma. Melissa had an aptitude for swimming and proudly competed as a member of the Bernard's High swim team. She worked at the Somerset Hills YMCA, and cofounded SNAP, special needs adult program at the Y, in order to provide recreational opportunities for people of her own age. She loved to write poetry, which captured the attention of musician and songwriter Rachel Fuller, resulting in two recordings,'The Ring lyrics by Melissa Regio and music and performance by Rachel Fuller. A portion of'The Ring' is introduction music for this podcast.'Love Is a Potion'[inaudible] lyrics by Melissa Riggio music and performance by Rachel Fuller in 2006 a portion of this song is the outgoing music for this podcast. Her role as a self advocate was acknowledged when she received the self advocate award from the National Down Syndrome society and had lunch and featuring her and Hillary Clinton in 2003 Melissa's own words were captured in National Geographic kids magazine in December of 2006 in an article entitled, I Have Down Syndrome. No, me. Before you judge me. Written by Melissa Regio as told to Rachel buckles. Melissa wanted to be seen as a young woman. First one was similar goals and dreams to those of her two sisters. She had down syndrome, yes, but she also had drains to drive to go to college, to live independently in her own apartment, get married and have children. Melissa wanted a life like yours. Melissa was taken from as much too soon in 2008 after a year long battle with leukemia. But she lives on forever, not only as an angel to her family and to all who knew her, but as an inspiration to countless families like mine who see her as a role model. Her spirit lives on in six postsecondary education programs in New York and New Jersey that her parents were instrumental in founding and in the Melissa regio residents, a home to six adults with developmental disabilities in basking Ridge, New Jersey. These accomplishments are just a glimpse into the extraordinary life of a young woman who lived a full and productive life.

Speaker 4: 4:36

Steve and Laura Regio, welcome. Thank you so much for taking time out of your busy lives to talk to us today. I really appreciate seeing you. Hello. Thank you. Let's start out with a, if you don't mind, when Melissa was born, could you tell me about Melissa's birth? Yeah, it was a normal pregnancy. Uh, all the prenatal testing that was done came back normal. So there was no inkling that anything was, you know, out of the ordinary. Um, and the actual delivery was beautiful. She was my second child, so it was much easy. Our, I had natural childbirth and there was a midwife with me this time. She was a nurse and so it just was a really beautiful birth. Um, when she was born, we bonded with her. Uh, no one said anything to us that anything was wrong. And it just was similar to my, my experience with my first daughter. It was only after I got back to my room and they started to bring the babies around for feeding. They didn't bring her and I went out into the hole and walk to the nursery and I saw like a group of people standing around her and you know, I guess examining her, looking at her. And so I, I don't know if the mom would be got a little nervous. I didn't. My, my doctor around, um, later he swore me in the hole and he said, Laura, why, why aren't you feeding the baby? And I said, they won't bring her to me. Um, I don't know. Something's not right there examining heart. And so he closed my door and he went up. And the next thing I know, the baby was brought to me and I said to him, you know what is wrong? And he said there, you know, thinking that there could be some chromosomal abnormality. They can't say what it is. They're not sure, uh, you know, they'll have to do some testing. Uh, you'll go home tomorrow and then the next day, um, you'll bring her back and they'll do this chromosomal tests and there'll be able to tell if there truly is anything wrong. And so we went home the next day and I called my pediatrician and he said, come in right away. And when he examined our, he said, you know, they are looking for trisomy 21. Uh, I think he said there were like 16 features that go with that abnormality and she has half of them. He said, so I can't tell you she could have them. She may not have them until this test is done. So they did the test. And, uh, we waited, I think it was almost two weeks. I hadn't heard anything. And so I called and I said, you know, I, I want, the results were were on pins and needles here. And they said, well, you know, we have to grow 60 cells. And by then Stephen, I had started like reading and I'm just familiarizing ourselves for so many 21 and she said, well, we've only been only able to grow like 10 cells. So I said to her, well, if it's in every one of those 10 cells, the chances are that she's not mosaic, which would mean you only have, it's not in all of the south. And so they said, yes, it is an all the 10 you know, we'll continue growing them, but it looks like she does have it. And so from there we really just hit the ground running. I'm trying to find, you know, a program to give her the best start for how to really reach your potential.

Speaker 5: 8:00

I think the first indelible experience of her birth after finding out that she had down syndrome was the realization that the hospital, the staff were completely unprepared to properly deal with a parent whose child had a disability. And talking to all the parents over the years, our experience was not uncommon. And I think what we believe in and all the parents believe is that if there's something wrong with your child, um, parents would like to be told directly as soon as possible and not to be kept in suspense. Uh, which was very unfortunate time for us. I think it was almost me. Well certainly it was the first 72 hours were a completely ms handled in our opinion, but we did have to wait a full two weeks for the complete diagnosis. Well, sometime after Melissa was born, we became involved with, um, the association for the help of retarded children in New York. Um, I became a board member and Laura and I would regularly attend many of their meetings and functions. And it wasn't long after our involvement that HRC began a program called grand rounds, where that listened to parents with similar stories to ours. And they put together a program to go through, uh, all of the New York City hospitals to teach the staff and let them know that they have to confront the parents directly. Immediately. And provide them with as much information as possible to get their children off to a good story. That's wonderful. That's wonderful. And if you wouldn't mind, if you could fill the audience in on how many titles were available at Barnes and noble when Melissa was born and what happened after Melissa was born? Laura being a teacher and having so much experience in, in, um, teaching young children, knew what dance syndrome was and knew the characteristics of it. And she knew that we had to get to work right away. I was completely unprepared. I didn't know anything about down syndrome at the time. I was the chief executive officer of Barnes and noble. So my first instinct was to go and get some books about down syndrome to let us know what it was about, what we should do, um, the path that we should, you know, follow. Um, so I went to the shelves of Barnes and noble and they were virtually empty of books about down syndrome. So I worked with, uh, some of my colleagues and staff and we put together, um, a program that that included a dozens and ultimately became hundreds of titles about children with special needs and introduced it nationwide and Barnes and noble, I must say at the time, there weren't many books published, uh, in that particular, uh, area, especially for prep for parents. Of course there were many scholarly monographs and books for the medical community but not for parents. And I think that our not

Speaker 4: 11:54

only help to provide parents with books but um, inspired publishers to do more publishing that to release more books into commission, more books about how to get a parent's off to end the children off to a good store. And you touched on your association with your local Arc and I believe you use them for early intervention as well. Would you mind talking a right after Melissa was born? Uh, I knew that we had to put her into an infant stimulation program at that time. And my sister was a nurse and she had recommended this school in Brooklyn called the William O'Connor school. And I'm, Melissa started when she was a bad a month old, a bus would come and take her and I there, I think it was at least two times a week in the beginning. And there, you know, she was seen by a physical therapist and educational expert. I'm a speech therapist. So she received all those services and then they also had, um, like a, a parent group that I found very helpful of people in the same situation as, as I was, you know, either ha having just had a baby with down syndrome or maybe their child was like one to two years old. And so it really, um, it really just helped me to talk about it, to hear their stories for a, for me to tell them my story. And uh, I feel like it really got me off to a good start along with Melissa receiving all those services. So she stayed at that school until she was five years old. And uh, you know, she began to lead her milestones and as she reached those milestones, we became more relaxed and more confident that this is a real child here. She's going to leave her mark and be capable of doing much more than people thought years and years before. Um, you know, we had Melissa, so, um, and we kept reading and investigating and I found out that there was a Catholic school near us that had included three children with down syndrome in their school up until eighth grade. And so the school, the William of kind of school had, um, a board where an article was posted about that. And I remember seeing it, I guess before Melissa was one and thinking that's where she's going to go when we're finished here. And so when, when she was five years old, you know, we had our IEP meeting as to, you know, what I wanted to do. And I said, I didn't want her in a special program. I wanted to go to this school and see if they would accept her. Um, and the school was called Our Lady Guadalupe. And I met with the principal and she said, yes, you know, she met Melissa and she said, yes, I think, you know, she could do well here. And so she started kindergarten and I asked, could I come and observe her after a few months to see how things were going. And when I went, things seem really well. But I found that there were times where the teacher would say, take out your math book and turn to page 10 which she did, you know, get your pencil out and we're going to work on this. And so in trying to find her pencil case and opening it and getting the pencil out, it was kind of like a time lag where she really wasn't ready and on task. And so I felt that she really would benefit by having an aide in the room that could help her if she wasn't on task or you know, had a problem with something. Because I think in that class they were between 20 and 25 children and one teacher. So I went to the principal and I told her and she agreed. And so they found a lovely woman to be Melissa's aide. And she actually was her aid until she left that school in third grade because we had decided to move to New Jersey public school, I believe. Yeah. I think maybe, um, that may have been provided by the public school system. Right, right, right. But I think they had someone, a speech therapist come to the have to school. I don't think, I think the school provided the eight or we may have even helped pay for it, but she did get this to the services that she needed. The public school would send someone to the school to give her her. Um, well she, she wasn't having physical therapy then, just she was just doing speech therapy. Well, if I recall the school that Melissa attended did a wonderful job accepting her, welcoming her, and making sure that her classmates supported her Clu, included her in every single aspect. Um, nevertheless, um, as a child with a disability, she did need additional services that that particular school was incapable of providing. So the public school, and we would go every year for the IEP. And those rup sessions are, are not the most pleasant experiences from parents. All the preparation leading up to them. And then the event themselves. I recall at the last day that we did, when we lived in Brooklyn, there were five or six individuals around the table talking about Melissa with notes and folders. And at the end of the meeting, I was a little suspicious and I asked, did anyone here ever meet Melissa?

Speaker 2: 17:50

Yeah.

Speaker 5: 17:50

And they said no. And I kind of, I was in a state of shock and after the meeting I said to Laura, we gotta get Outta here. You know, we have to find a better place for Melissa. And that's when we decided to, you know, look, um, in New Jersey and, and we, we landed at a place where a friend of ours had raised a child with down syndrome and attended a local public school. So that, so our journey continued there. Uh, primarily because we felt that Melissa needed a place where they would pay attention to her and they would, people would know her and not make decisions about how, without knowing her. So that's, that's where the next chapter of of Lewis's education began. And Laura, armed with all of this information or learning that she had done working with the Catholic school, uh, when pell mell into, um, the Bernards, what's the name of the school? Uh, the Bedwell elementary school and Laura went in there and she knew exactly how to talk to them. Teachers and the staff and the principal. And over the years, mmm. Worked hard to make sure that that school gave Melissa everything that she needed to get. And I think that experience taught us that education in America is a local, um, needs to be localized. The people in the community, the teachers, the principal, the staff, all involved in educating students. And it's very difficult, mmm. To get that done without every one willing to do that. It's very difficult to mandate from the federal government, from the state. It's local disability rights is a civil rights issue that affects all Americans. Education is a local issue that can only be executed well by the people in the community. And as, as Laura will explain about her education, she went on to not just be fully integrated as Laura and I wanted into elementary school and then middle school and high school. But because of how much Laura fought and we fought and kept on top of the teachers, Melissa out of high school

Speaker 4: 20:48

with a regular high school diploma. And that achievement wasn't anything we would have ever thought about the day she was born. That's so fabulous. And as you said, everything you just talked about, you know, the journey Hella hard. You have to work how you have to fight. You're showing that everybody, everybody's not alone when they have to do this, they feel alone, but they're not alone. I feel like even if a school is willing, if the principles behind it and mandates it year to year, teachers change, um, they may not be on board with it. And so each year it brings a new set of things to contend with to work through. I almost felt like Melissa had to prove every year and that she was worthy to be there in that classroom where we would never have thought that with our other two daughters. Um, and it, it's really a travesty. I, you know, I don't, I did, she deserve to be there as much as everyone else did. But I will say to, you know, sometimes depending on what disability a child has, you know, a teacher in a room with 20 or 25 children can't expect, you know, be expected to be able to meet needs that might be, I don't know, add of like the normal range or, and so we just can't leave, you know, this child with a disability in a classroom with no with no help. No. Um, without supports, without saying that. Exactly. But I just feel like as a parent you can't sit back. I really feel like Melissa lives such a full life because we were really in the trenches year to year, especially for me because I was in education and you know, you just have to get in there. It's hard, you know, all timid in the beginning. But each day, each year that she had a good year and really continued to learn, you know, it just fueled, need to, you know, start the next battle and the next battle. Um, but I have to say she really flourished. And each year just showed us, you know, what she was capable of then. You know, Melissa really had determination and uh, at each step of the way, if something were difficult, she did it to her, the best of her ability. And if couldn't, if she couldn't do it exactly the way it was wanted, she kind of found a way to do it her way. And so, um, I don't know. I just, you know, she wasn't, you could not underestimate her, but I felt like each year I had, she had to prove and I had to prove, you know, sometimes I think they thought I was crazy and seeing something that was, I think what Laura was so instrumental in doing with Melissa, as you said earlier in her early years, she hit every milestone. But as she got older, it became evident that, um,

Speaker 5: 23:46

while we fought for inclusion and we believe fully in inclusion, we also believe that adaptive curriculum is necessary to bring our children along. You know, so they may not be able to hit those same exact academic marks, but if the curriculum is adapted to them, the amount of education and growth that they can achieve is amazing. I remember once, um, that Melissa did learn to read at about the fifth grade level. She loves to read and I'll never forget one day she, she brought home, um, I think it was the novel Frankenstein, which was assigned to her class. That's a difficult book for adults. It's very complex. So, um, I got the idea that, wow, these books are to be adapted so that they could more easily be read by youngsters as well as individuals with disabilities. And, uh, we, we did publish, um, several dozen adapted classics, which went on to sell, you know, well over a million copies. So Melissa was an inspiration to me to say, wait a minute. You know, she didn't suggest it specifically, but I noticed that she wanted to understand the story and she ultimately did. So these kids have a lot to offer us in, in showing how much they can achieve and how, how these, these milestones. Um, if they just tweaked a little, sometimes a lot, but often just a little, our kids can, can reach heights that nobody ever would have figured at the time she was born. And of course, since she was born, um, you know, there's been so much more progress to do her parents like Laura that get in there with the teacher and say, you have to understand why my kid, my daughter can really learn. But, but you've got to work to adapt it. And it is, as Laura said, it's a local issue. It's a school issue. The parent's willing at the teacher's willing of the staff were willing and every single school in America needs to be like that.

Speaker 1: 26:19

Oh, agreed. I'm sure there's a million people that would agree with that. Now those, those books that you mentioned being adapted, are they still available?

Speaker 5: 26:28

Yes. Yes. They call classic starts classic stars. You're published by Sterling publishing. They're available nationwide.

Speaker 1: 26:36

I suck. Starts. Okay. You're giving us so many extra reasons to love Barnes and noble on top of the ones we already, so that's wonderful. Thank you for listening to the first episode of born. Fabulous. I hope you enjoyed it and want to hear more. This episode is the first of four speaking with Steven Laura Richo. To learn more about the[inaudible], including photos and videos, please go to born fabulous podcast.com you can also subscribe to born fabulous and send feedback on the website. Now enjoy a clip of the ring lyrics by Melissa Regio and music and singing by Rachel Fuller.