Born Fabulous
Born Fabulous
Season 3, Episode 17, Part 1: June & Jim Zoul with Melody & Bob Rupple, "Love and Limitless Potential"
How do you navigate the joys and challenges of raising young adults with intellectual disabilities? Join us for this heartwarming episode of Born Fabulous, where we uncover the inspiring stories of two extraordinary couples, Jim and June Soule and Melody and Bob Ruppel. You'll hear Melody's journey managing government contracts at WestEd, where her professional mission of full inclusion for special needs children was deeply influenced by her personal experiences. June shares the emotional rollercoaster of welcoming their son James after a long struggle to have a child, emphasizing the vital role family support plays in fostering independence for young adults with Down syndrome.
In a candid conversation, Melody and Bob Ruppel open up about their initial reactions to their daughter Kristen's diagnosis of Down syndrome and the early interventions that shaped her development. Bob's immediate sense of joy contrasts with Melody's initial challenges, offering an authentic glimpse into their parenting journey. Don't miss our preview of upcoming episodes that focus on James and Kristen's educational paths, highlighting advocacy for full inclusion and the complexities of IEP meetings. Tune in for heartfelt anecdotes and valuable insights on the importance of community, inclusion, and unwavering family support.
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Hello, my name is Greta Harrison. Welcome to Born Fabulous Podcast, Season 3, Episode 17. The theme of this season is young adults with intellectual disabilities living full lives of independence and interdependence. After 16 episodes featuring three self-advocates, now you will hear an in-depth series about marriage, featuring parents, self-advocates with support staff and an employer. This is the first of eight episodes, with June and Jim Soule and Melody and Bob Ruppel. Both couples are retired and have been married over 40 years. They are the parents of James and Kristen Ruppel, who have been married over five years. James and Kristen have Down syndrome. This episode won't have any music at the beginning or end because of its length and the unusual beginning. Before I start an interview, I always press record to get casual chit-chat that may become relevant. After this introduction, you will hear a casual conversation where the Ruples were discussing their former careers. Bob had just finished telling me his story and then he segued to Melody. Here is her story.
Speaker 3:And Melody had a thriving career until Krista back to work and managing some government contracts that addressed actually full inclusion for special needs children in a regular classroom. So although I did the financial part of it, it was a very rewarding job.
Speaker 1:That is great, See, I'm glad I asked that question. So the government. Okay, if you could tell me just a little bit more about that.
Speaker 3:Have you heard of the company WestEd? I have not. They're pretty well known in education throughout all the states, all the states. But they manage grants that address needs of kids from birth through college. And my boss believed in full inclusion for our children and really spent her career working towards that. So they trained teachers how to work with kids with special needs, but not just that, the whole emotional, behavioral element, and so it has gone into kids with autism, kids with any kind of a. Well, we all learn differently, and so it addresses that and it trains the teachers how to work with those kids, giving them more confidence in their teaching skills, and it's a great program.
Speaker 1:And it's still around.
Speaker 3:Oh yeah, oh yeah. If you look up WestEd you'll get all kinds of information.
Speaker 1:Okay, well, that's great. Well, you know, when I get to the part where I'm asking about when they're little in their school years, you can certainly mention what you just said, because I'm sure that helped you making.
Speaker 3:Well, I didn't do that till after I went back to work. I took a break in between having three little kids and a teenager at home three little kids and a teenager at home. And so when I went back to work, I went to work for this company and but I met my boss at the bus stop and after, when Kristen was riding the bus, and from there, you know, she had me talk at her junior college classes and and she always offered me a job, like every year for five years, and then one year when I had one too many expenses, I said yes.
Speaker 1:So how old was Kristen when you started working for them? Um, I think she was about 14. How old was Kristen when you started working for them? Just estimated, I think she was about 14.
Speaker 1:Okay, so when she was little, when she was like eight or nine, you met this lady at the bus stop. Yeah, you need to work that story into what we talk about. Okay, that's great because it does show about connections and how and the knowledge and the knowledge that we have to accumulate as parents to have our kids included, how that's valuable and she knew that and she tapped into that, so you definitely need to mention that.
Speaker 2:And it's generational, because now our oldest daughter, nicole, is working for that company too along with us.
Speaker 3:That's great, and she's a teacher as well, and she's a teacher, so she's actually a trainer.
Speaker 1:That's great. And now Episode 17 officially begins. Hello everybody, I am very, very happy to be able to introduce you to two wonderful set of parents they each have a young adult with Down syndrome and who are married to each other, and they make that work and they're going to share with us some of the secrets of their journey and how this has all played out. So I want to introduce you to Jim and June Zoll, melody and Bob Ruppel. So hello everybody. Thank you for being with us today. You're welcome. So I want to start out with talking about the journeys of your beautiful, beautiful young adults. I'm so grateful that you're willing to share their journeys with us. If you could talk about their birth story, it doesn't matter to me which one of you starts first. Whoever wants.
Speaker 4:Well, I'll go ahead. James, when James was born, we didn't have any idea that he had Down syndrome before he was born. But immediately when he was delivered, the doctor suspected, the um doctor suspected, and, um, I uh knew something was kind of different because they, after James was born, they started to wheel me in with other moms that were recovering and the doctor said, oh no, let's put her in this private room. And the minute they did that I kind of had a feeling that something wasn't quite right. And, sure enough, the doctor came in immediately and told us that his suspicion was that James had Down syndrome. We have an older daughter, 10 years older than James. We tried for 10 years to have a baby and lost three. James's birth was my final try. So when James was delivered, I was thrilled to have a baby. I didn't care about any of the news that he was suspected he had Down syndrome. I was elated At that moment. There wasn't anything that could have made me feel any different. So the people around me were my mother, my sisters, everyone else took it much harder than me Again, because I think we had tried so hard to just have a baby that I was thrilled.
Speaker 4:So James's health at birth was really quite good. He had jaundice, he had dysplasia. His hips Stayed in the hospital for a few days because of jaundice, but his heart was good. Those were really the only two health issues at his birth. I remember the week that he stayed at the hospital five days. They wanted to give him a bottle. He wasn't sucking from my breast and I had read to not do that because once he started sucking from a bottle it was so much easier. So I remember going to the hospital every three hours to try to get him to nurse for a few days and ultimately what I did was get a wash rag and ice cold water and have him at my breast and touch the wash rag to his face. And it startled him enough to go and he would suck. So I went out, I told the nurses no bottles and uh, james actually breastfed for the first year and uh went right to a cup. So his birth was good, his health was good. Yeah, that was about it for his birth story.
Speaker 1:Came home and we started with all the stuff that you do. Before I get into all that stuff that you do, I want to ask Jim, sometimes it's different for the father and the mother how that birth story starts, so how was that for you when this happened?
Speaker 5:very interesting to to have somebody come out almost immediately, a doctor come out and tell you you know this diagnosis of your baby and, uh, like june said, we were, we were just so thrilled to finally have had had a little baby. That, um, that really prioritized the situation more than anything else. Um, whatever the facts were, you know we were gonna, we would deal with whatever we had to deal with and you know wasn't going to get us down and that's pretty much the way we have lived James' entire life. He's more than anything, he was a blessing.
Speaker 5:So OK we were very happy to have him and still are.
Speaker 1:And he is how old now.
Speaker 5:James was. He'll be thirty nine in October.
Speaker 1:OK, we will get into the. The other stuff after they're born, after we hear the RuPaul's story. The other stuff after they're born, after we hear the Rupel story.
Speaker 3:So Melody and Bob, so Kristen was a quick birth I seem to have my kids pretty fast and so you know, the doctor barely made it into the room. He literally didn't have time to put his jacket on, or he had his shirt and his tie and he ran in and she was just delivered. The nurses thought they were going to have to deliver her and so no one said anything right away. And you know, we met her and then they took her in to get her cleaned up and we had been at the hospital about three hours and Bob went home to take a shower, home to take a shower, and it was really the nurses that suspected it and contacted the doctor at the, and it was a pediatrician that was on call. And so he came in and told me and and I can't say my reaction was as good as June's.
Speaker 3:You know, I mean I was pretty, you know I was 32. I never, you know, you worry about, oh, my kid could be blind or deaf, but I'm not 35. So you know we're pretty shocked, and so I had to call Bob at home to tell him, and then he came back from the hospital, but she was very healthy. She didn't have any health problems. She had a good APGAR score. She breastfed In fact she was very stubborn about that and would never take a bottle. But I really think for me it took a full year to adjust to the idea and you know that you just are going on a different journey, a different picture than you had for that child. And my daughter, nicole, was 12 then and one day she says to me Mom, you think you're the only person that ever had a baby with Down syndrome.
Speaker 3:You basically get it together here, and so I think part of the struggle was that I already had Nicole when we got married and that for Bob not to have that birth experience the exciting birth experience was difficult for me. Bob, on the other hand, adjusted much more quickly.
Speaker 1:Bob you want to tell us how this was for you.
Speaker 2:Sure, so well. It's a few stories I probably shouldn't say on the camera, but I was in the room when Kristen was born and, as Melody said, the nurses were pretty frantic that they thought they were going to have to deliver it. And it was absolutely as Melody described. He came running in ripping off his tie and, boom, caught Kristen just in time coming out. But for me, first of all, I was just ecstatic.
Speaker 2:Of course this was my first and I didn't know anything about babies and I didn't, you know, I was just a dumb guy that you know, got married and was going to find himself a father, to be a father. But when Kristen was born, I immediately sensed something wasn't right. But having no experience about anything, I had no idea what it might be and I thought what do I know? I don't, I've never seen a newborn baby, you know, immediately after birth before. So I didn't really give it much thought at all, I mean, it just looped on.
Speaker 2:But I did remember, I remember having that sense that she didn't look quite right. But then I just, like I said, just put it on my mind, went on and went home, as Melody said, thinking we had a healthy, you know, baby girl. And then I got the phone call, which you know was pretty devastating, but, as Melody said, I just kind of moved past that really quick too and I just said, you know, okay, we don't have the daughter we thought we were going to have, but we have this daughter and, uh, and we started that journey together and it's been incredibly difficult and incredibly rewarding. And, um, here we are.
Speaker 1:More rewarding than words can ever say right, oh, yeah, right, yeah, and I'm sure that both james and kristin were beautiful babies. Yeah, I'm sure, yeah, you know those years. I always, when I talk to a young mom, I'm like don't, don't, don't worry so much, just enjoy this time right now, just enjoy it. Yeah, right now, just enjoy it yeah.
Speaker 1:I wished I'd enjoyed it a little bit more, even though I think I know I enjoyed it. I wished I'd enjoyed it more, yeah, so thank you for sharing that. Now let's talk about the early years, when they're toddlers and before they're in school. How did that go? Did you have early intervention? If so, when did that start? What did that look like for you? When did they start preschool If they went to preschool, that kind of stuff.
Speaker 3:Yeah, well, kristen, really by three months, maybe even a little bit earlier. We had, you know, we had contacted regional center and we had like a physical therapist coming to our house and, you know, giving me exercises and things to help return and get stronger and all that. I feel like maybe about a year she started at the ARC in a preschool program or like a baby program really with other kids with disabilities, and really some of those people are still my friends today. I mean, the girls all grew up together and I still see those parents all the time and you know. So she went there at the arc till she was about two and a half years old, you know, and she could by then. She didn't walk until she was two, but she probably could have. This is Kristen, because when she decided to walk she got up and walked into the next room. Kristen doesn't like to do anything until she's sure she can be perfect at it. Anything until she's sure she can be perfect at it. And you know. So she learned to play with kids. She, you know, could recognize her name. She could recognize all the names of all the kids in the classroom. She has a really good memory. And then, when she was two and a half she was ready to transition out of that program.
Speaker 3:And so they send psychologists to test your kids, which is just such an arbitrary system of someone walking into a room that doesn't know your child and expect your child to perform. And so when Kristen, when the psychologist, got to an IQ of 70, she quit testing her. Now I'm not saying that Kristen has a normal IQ, but as a baby she was really a pretty together little kid. And so the director came to me and she said she just quit testing her because she hadn't had someone test that high. You've got to make her test her again. So they came back in and they gave her the test of what they would give deaf children and she tested in a normal range. So regional center at that point had absolutely no program for her. So they actually paid for her to go to a regular preschool three days a week. Wow, now, once she was done with that, they did have better programs to offer, but she actually transitioned into a regular preschool that was happy to take her and she was there till she was five years old.
Speaker 1:Now, did you know, before this happened, that you were going to want to go on an inclusive journey? Did you know that?
Speaker 3:at that time? Oh no, no, you didn't know. I mean, our doctor told us that Krista might not walk or talk.
Speaker 2:We'd have to feed her.
Speaker 3:You know. So we had no idea what to expect. So we had no idea what to expect. The full inclusion journey comes a little farther down the road, once she got into public school.
Speaker 1:But really it started then? Well, yes, Because she went to a regular preschool.
Speaker 3:Yeah.
Speaker 1:So I see what you're saying. Your mindset started further down, but you were already led to it when it came to preschool, which is great, Because in 2023, which is when we're doing this interview there are thousands and thousands and thousands of parents fighting to have their child included in preschool to this day.
Speaker 3:To this day To this day, to this day yeah.
Speaker 1:To this day Now, my daughter was included, but you know we're exceptions, we're all exceptions, so I think it's important to stay. And how old is Kristen right now?
Speaker 3:She's 38.
Speaker 1:Okay, so we have a 38 and a 39-year-old young adult. Well, I don't know, when do we stop saying young adult At 40? I don't know, I don't know. We have a 38 or a 39-year-old adult young adult who were included. Why can't we do that in 2023? You know this is crazy. So all right, so that's interesting. But before I I go back to june and jim, uh, melody and and bob you told me that she walked it too. Were her other milestones pretty similar to what her milestone should have been when?
Speaker 1:she was a baby and developing Well.
Speaker 3:I'm sure she was a little late on everything, but Kristen really has a really good memory and so, like that served her well. She like, in that art class she had memorized all the kids' name tags that was our way of teaching names and she would actually pick them up and take them to all the kids. Name tags that was our way of teaching names, and she would actually pick them up and take them to all the kids and the teachers were like, oh, you know, she learned to sign before she spoke, and by this time I was pregnant with Lisa too, and so you know, life was busy. But you know, she, she was she. I wouldn't say she was right on target, but she was still. She was doing well she was pretty close.
Speaker 1:Yeah, yeah, and, and, and, what, what? How old was she when she started to speak, do you think?
Speaker 3:Maybe 18 months Okay.
Speaker 2:But we learned pretty early from what the doctor told us was likely to happen. The doctor told us was likely to happen, which was not at all what happened, and from those testing experiences to listen to the professionals and then just forget about what they said. And our attitude was Kristen will do what Kristen is going to do and we're not setting any boundaries for what she can achieve. She will set her own boundaries and that every kid is different. Yeah, whatever she was going to do, she was going to do.
Speaker 1:And you know, I've heard many parents of of adults say exactly what you just said. You cannot let what the professionals, who still seem to be outdated in many ways, in many instances, dictate your expectations. The saying that my daughter and I have is no one ever rose to low expectations. So you would think the medical professionals would know that, but they don't. So okay, on to June and Jim. Let's hear about James's early years.
Speaker 5:Go ahead.
Speaker 4:I think they were very similar to Kristen somewhat in that James started with the regional center For him. It was called the Early Infant stem program in san diego. I actually took him to a little class there with other babies early on um the uh, and so we participated in the programs at the art and the same programs I think that Melody might have been in. I don't know how we missed each other, but we did a preschool program. It was not inclusive, it was a preschool for all disabled preschoolers. He participated in that from about three to five years of age.
Speaker 4:He started getting transported by the school district, one thing that I did my first interaction with the school district. They wanted to pick James up in a little school bus and take him to his preschool class. But the bus had no seatbelts on the bus and I remember my first time contacting the special ed director going what are you doing? I'm not going to put my child on a bus with no seatbelts. So they did ultimately get seatbelts on the buses for kids in our school district. But yeah, it was a great preschool experience for James, but not inclusive at all. So, knowing what I know now, I wished that at that early age he would have had that experience of inclusion with regular peers. I think you can only learn. You know those correct social behaviors being around other kids with regular social behaviors, you in a book or whatever, but that's what. Um, I know that now and but um, let's see.
Speaker 1:I like your quote that you can't be taught that in a book, because that's true. You know, I always say that the benefits of inclusion in school are um and now the right word is escaping me but they are subliminal really. I mean, and there's so many that you can't articulate that even come up later in life, and not just for my daughter, but many. I think there's a quieter sense of confidence.
Speaker 1:It's just a natural, quieter sense of confidence, just because of her environment, just because of that. There's so many things, but I like that. You your quote. You can't teach that in a book.
Speaker 4:I used that quote at so many IEP meetings because it was so important to me for him to learn all of that, to be able to live in life. You can't be segregated from that and try to be taught that you have to live it. So I used that a lot.
Speaker 1:That's great. So did he. Do you remember when he talked and when he walked?
Speaker 4:He walked at two years of age, the same as Kristen. He never learned to crawl. Interestingly enough, he was a roller, so he would roll from room to room. He no matter how many times you, you know, you try to teach him how to get up on all fours and for all he may be stubborn, I don't know, maybe rolling was easier.
Speaker 5:The dysplasia the dysplasia. The dysplasia.
Speaker 4:Yeah, so he walked it too and James has a stutter where he gets stuck on words. It's over the years has become so much better. A lot of speech therapy, things like that but his talking has always in his early years were one and two word utterances. It wasn't sentence type. So talking we're really one and two words for you know, probably tell elementary school for sure.
Speaker 1:And you think he started at age one or around that. Yeah, yeah, you know Okay.
Speaker 1:So yeah, and the reason I ask these questions is younger parents. You know they they can't get out of the habit of those milestones and targeting. But I remember reading a book because we were fortunate to know ahead of time, so we had that time before my daughter was born to do the research and I remember reading one book that said your baby is still a beautiful baby and it really doesn't matter when their milestones are. They will still have those milestones and I remember thinking that was just so wonderful. So that's why I hope the young parents will enjoy this time, no matter when their milestones happen yeah, so that's great. Milestones happen yeah, so so that's that's great.
Speaker 1:Thank you for listening to episode 17 of Born Fabulous podcast, third season. I hope you enjoyed it and want to hear more short video clips from most episodes are available on our YouTube channel and on bornfabulouspodcastcom. In episode 18, you will hear the Zoles and and the Ruppels discuss James and Kristen's school years, advocating for full inclusion, iep meetings and more, mixed with some good examples and stories. Please follow and like us on Facebook, instagram and Twitter. If you enjoyed this episode. I'd be honored if you would leave a review wherever you heard this podcast.