Born Fabulous
Born Fabulous
Season 3, Episode 22, Part 6: June & Jim Zoul with Melody & Bob Rupple, "Groceries, Book Clubs, and a Pandemic: A Quilt of Resilience"
As parents, we're wired to worry about our children's future—what if that future includes an intellectual disability? This week, we're joined by June and Jim Zoll, alongside Melody and Bob Ruppel, who open their hearts about raising children with Down syndrome. Their stories are not just tales of parenting, but of fostering independence in James and Kristen, a married couple proving that love knows no boundaries. We uncover the delicate dance of support and autonomy, where groceries become a symbol of self-reliance and a book club reflects the triumph of adaptability. Listen to the remarkable journey of these young adults as they carve out their space in the world of interdependence, and how their parents balance the art of letting go with the instinct to hold on.
When the world turned upside down during the pandemic, so did the support systems for individuals like James and Kristen. Hear how their network of care pivoted to virtual platforms, keeping the essence of their routines alive. For Kristen, a book club that blossomed online is now a beacon of her growing independence. Discover how the Ruppels and the Zolls navigated the shifting sands of staffing, living arrangements, and preserving the sanctity of marriage under one roof. Our conversation is a patchwork of resilience, creativity, and love, stitched together by families who demonstrate just how flexible and robust the fabric of care can be. Tune in to this episode that doesn't just talk about overcoming challenges but celebrates the victories that often go unsung.
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Hello, my name is Greta Harrison. Welcome to Born Fabulous Podcast, season 3, episode 22. The theme of this season is young adults with intellectual disabilities living full lives of independence and interdependence. This episode features June and Jim Zoll and Melody and Bob Ruppel. It is the sixth of eight episodes with the Zolls and the Rupels, which is part of an in-depth series about marriage featuring parents, self-advocates with support staff and an employer. Both the Zolls and the Rupels are retired and have been married over 40 years. They are the parents of James Zoll and Kristen Rupel, who have been married over five years. James and Kristen have Down syndrome. Now please enjoy this clip. Of Love is a Potion. The lyrics are by Melissa Riggio, who was the focus of Season 1, episodes 1 through 4. The music and voice are by Rachel Fuller. Love is everything.
Rachel Fuller:Love is all around. Love is all around. Love is a potion, love is passion, love is devotion.
Greta Harrison:Love is fusion. It takes three years for you to make it work. Are they living together during these three years or are they dating?
Melody Rupple:They're just dating.
Greta Harrison:They're just dating. Okay, so then they live together for five years and I'm guessing that's a good trial period to see how this is all going to work right. Definitely how this is all going to work right.
June Zoul:Definitely. I think it's all you know. For us we just did not really comprehend when they started dating where it was all going to go. I'll go back to what Melody said. In that we we followed their lead and what they wanted and we tried to listen and facilitate what they wanted and it just kind of happened naturally, with our supports and listening to what it is that they wanted.
June Zoul:When James wanted to move out, I was blown away, like Melody, his first year of living out of the house. I like to say that I cried every day for a year. Jim would walk in the door from work and I would just cry because how is he going to be safe? How is he going to cook? How is he going to clean?
June Zoul:You allow a support team of people to come in and out of their apartment to help them live. How five or six other adult opinions on how they think your child should live, how they think your child should behave and I say child, but they're young adults but you as a parent, give up or let them go. Your role as a parent becomes different when they live on their own and for me it was a little challenging to find out what my role as a parent was. During that first year it was very hard to step back when other support people had opinions on things. Most of the time they were correct.
June Zoul:You know that I needed to step back more, but what I found was and I still believe today after them, living together for 10 years is what I've learned. For me is that I'm the parent and I will always be the parent, and that the support people and the support team they're paid employees and they're lovely, wonderful people that we grow to love and trust. But the bottom line is I'm in his life forever and there's still some parenting ideas that I have that I can honor, because they will come and go and I will always be and no one loves it like us. So I've learned that and it almost has given me permission to continue to be the parent but to still step back and allow, listen to what it is. You know that he wants and I hope that made sense, but it took me a while to get to that point. So the first year was a little challenging for me.
Greta Harrison:Melody and Bob your thoughts.
Melody Rupple:I didn't struggle in the ways that June struggled, I think mainly because of having such a big family that Kristen already wasn't always the you know, the main focus. Kristen doesn't always ask for help. I guess that's the biggest thing for us is. She's pretty, she considers herself to be pretty competent and she is. I mean, she's super organized and motivated and really the first year was like when you're fresh, when your high school student goes off to the dorm, they eat anything they want and they could gain 15 pounds. I mean it was. It was that kind of thing. I don't want you telling me what to do. I moved out now, you know, I don't want you bugging me. I'm an adult, I can do what I want to do.
Bob Rupple:I mean it was pretty typical story of any you know, of any you know going off to a dorm.
Melody Rupple:I mean there really was a lot of that. So I think for me it was. It was learning to navigate that, a way to help her without overstepping and without her thinking I'm telling her what to do, which is pretty tough for me because I'm like come on, kristen, you know this isn't going to work, but she had to work through that. You know, even with the AIDS she's, and still to this day, that can be a thing we have to talk about. The AIDS are there to help you.
Melody Rupple:If you don't have an aid, you can't live out on your own. So they're not telling you what to do. They're trying to help you. You know, navigate life and do all the things that you want to accomplish. So I think we still work on that all the time, because you know she doesn't want to be told what to do. She wants to be treated like an adult. So it's a fine line to walk, because she does need help and she doesn't drive. And you know they had to learn about nutrition and all those things that all young adults have to learn about.
Greta Harrison:So, like you just brought up the nutrition, and what about grocery shopping? Who taught Christian how to grocery shop?
Melody Rupple:Well, she grocery shopped with her dad because her dad had to learn to grocery shop when he retired.
Bob Rupple:Yeah, I took over a lot of things when I retired. Nobody went back.
Melody Rupple:So he was going well, how do I grocery shop basically?
Bob Rupple:and so him and kristin would do the grocery shopping well, and kristin and I are both very, you know, systematic. Yeah, so we had charted out all the aisles and what's where and that kind of stuff. And, and to the points that we've earlier made, I would take her and I'd give her the list and I'd drop her off at one corner of the grocery store and have her meet me at the other with a full grocery cart full of everything. And when she got there we'd figure out what she didn't get, you know, or what she got wrong, and then we'd go fix it and over time she could just do it all herself. But they're groceries. That's a good thing you brought that up, because that's so key, obviously, to grocery shopping. They can't drive and it's the key to have food and good food.
Bob Rupple:When she was at home, I would try to teach her nutrition and she didn't want anything to do with it.
Bob Rupple:Once she moved out and had some aides teaching her about nutrition, that's a whole different story. Now, all of a sudden, dad, look what I learned and I'm doing all these things. And I said you know all those things I've been trying to get you to do, but you've been too stubborn because I'm telling you what to do, so you know. But what they developed really is a whole system that June could walk you through in detail but it would probably take a lot of time too. But they have a whole system that they've worked out with the aides of how they figure out their menus, how they figure out what food they have in the house to make certain recipes, what they need to buy at the store, you know what's perishable, what's not. They go through a whole routine of the stuff brings the food home and they have like a week's menu and they cook it all up and with the help of the aides and they do better at it than any of us do that that is for sure.
June Zoul:Yeah, they're, they're pretty incredible.
Bob Rupple:So they have a whole support system for just the grocery shopping that's, that's great that you learned.
Greta Harrison:You learned how to grocery shop with your daughter, then yeah right yeah I think I think that's great. I think every husband should should be able to do that. I still I've been married 43 years and I have to send my husband a picture of the item and don't get all the husbands in america mad just saying, just saying it's a skill, okay, so I I love that you guys learned that together.
Greta Harrison:Okay, now you mentioned your, the, the support that they have there. Okay, give me, uh, give all of us a, a visual picture. Like you mentioned, five or six people, I'm assuming that they rotate, um, how does that work? Could you give us a picture of that? How many agencies are involved? Now, just for people who are listening, I'm reminding you, this is in california. That has excellent services. Not every state is so fortunate, but but please let us know what that looks like.
Bob Rupple:June, you want to take that one. Yeah, that's a good one.
June Zoul:So we have it's called a supported living agency. We have one. The supported living agency is called LifeWorks, and they're funded by our regional center. What the Supported Living Agency does is they do the hiring and the paying of our James and Kristen's support staff. So what the LifeWorks would do is find and interview a person that they think would be good for James and Kristen's team. They send that person to James and Kristen's home and us parents meet with James and Kristen. So the six of us will interview this person as being a possible person that will support James and Kristen. And so, ultimately, the way James and Kristen's support team works, they need to have four, five. They've had up to six people on their team that the Supported Living Agency hires.
June Zoul:So James and Kristen, it was determined that their support would come in the form of three different shifts during the course of one day. So the first shift might be through. Monday. Through Friday looks a little different because of work, because of different things. Monday through Friday it might be three shifts. It will be a morning shift, maybe through breakfast I'll just throw these times out there.
June Zoul:They could be different times and fluctuate. The first shift might be 8 am to 1 pm, getting them through breakfast and lunch, if there's any cooking involved on the stove, helping them get to their prospective jobs, housework, laundry, whatever the day might bring. And again those times can fluctuate. The second shift might be 4 pm to 8 pm getting them through dinner and more living skills, grocery, shopping, whatever. Monday through Friday can be very different.
June Zoul:The third shift is typically 10 pm to 6 am. So they have an overnight person six days a week. They do have one night alone. It's probably their favorite night of the week because they have no support person there. James and Kristen do their best, I think, when they get their alone time as a couple. They love to be alone. So that would be the third shift.
June Zoul:The weekends are a little different because it's more social activities and the times could be different for the support staff. They do their weekly menus on Sundays. It's fine-tuned from the menu. They do their shopping lists and shop on Mondays. That's pretty routine. But other than that, the support team and the times that they work tend to fluctuate to James and Kristen's needs. James and Kristen know that during the interview process, when that prospective person comes to the apartment, they know that they got the power to hire. They know. I mean it's good that they know that, but to the point that anyway, I'm going to get a little confused here in my explaining. It's good to let James and Kristen know they've got the power to do all that, but sometimes it's not so good that they know they have the power to do all that Does the. It's not so good that they know they have the power to do all that Does the power go to their heads a little bit.
June Zoul:Well, yes, and what it does is make time for conversation as to why are you having such a hard time with this support person? You know the support people. When they're hired, my hat goes off to them because they walk this very fine line of honoring James and Kristen's independence and honoring that when they work, they're coming into James and Kristen's home and yet they are also expected to lead James and Kristen and guide them with the correct, with the appropriate behaviors and learning skills. And so the support people they do a great job? I think they don't. You know, they don't necessarily come in with that skill, but the support people learn how to support in a respectful, loving way.
Greta Harrison:Do you have trouble?
June Zoul:with turnover. There have been times that we have. We don't now We've learned really what to look for in hiring. We're still learning that we have had to fire a couple of people you know over five years. So we do pretty good with keeping really good people.
Rachel Fuller:There have been a few instances, a few times where we've been shorthanded and it's been difficult to bring the team back up to the correct number of teams of people and that doesn't have anything to do with the team or anything.
Bob Rupple:A lot of times it has to do with what's happening in the economy pandemic various external, various reasons yeah, you know, etc now that they have they help with transportation, right, yes, okay, that's a.
Greta Harrison:That's a huge, that's a huge help. But having said that, in your conversation, organically, you've already shown that James and Kristen can ride the train. They can do many things on their own right. Something very good the pandemic. How did the pandemic affect them? Because that was during their married time. How did that affect them? And I skipped the wedding, so we will definitely have to get to the wedding too. I didn't mean to skip that, but talk about the pandemic and then we'll talk about the wedding.
Melody Rupple:Well, we made the decision to bring them home just because all those aides had families of their own and to have that many people going in and out. And of course back then we didn't know you know as much as we do now and both Kristen and James are susceptible to respiratory infections and so that made us extremely paranoid. So we lived through it, june and I talked a lot on the phone. We rotated they would have it evolved actually.
Bob Rupple:But let's go back to rotation, but the same way, everybody evolved through the pandemic, our approach as the four parents with our young adults, evolved too. So we came up with some different approaches along the way as the pandemic progressed.
Melody Rupple:But basically they would spend you know, they'd spend like four days here together with us and then they'd go to June's for four days and then they might have a few days where they're separated and at their parents' house. But we made the decision that they were a married couple and that they needed to be treated that way and that we needed to keep them together as much as possible, and so we did it. It was not easy, especially when you're not used to having them at home and having to cook every day and have more groceries in the house, and especially for me, like the cooking every day thing, I'm like, ah, I'd be calling June going. Enough of this.
Bob Rupple:I think generally Kristen and James sailed through it remarkably well. Yes, you would think they would be really freaked out and their schedules could be turned upside down or they wouldn't be able to handle it. They just adjusted. They were so flexible and they loved living in hotel RuPaul and hotel, having their laundry done good stuff. They could just hang out and you know so.
June Zoul:Yeah, and I might add that we were able to keep most all of the support people by keeping them on the payroll by Zooming. We really got in. James and Kristen each got their own Zoom accounts to keep the support people on Zoom. So there was reading, there was art, there was cooking. We did a lot with the support people on Zoom in order to keep them on the payroll. That's good.
Bob Rupple:They were also able to bring their friends into that too, whether it was a book Kristen's book club or whatever you know. They it expanded to be a great facility for the aides, but also for their friends to participate as well.
Melody Rupple:And to this day, kristen and her friends Zoom every Wednesday for half an hour even though COVID's, you know, dealing with that, they still do that. And then Kristen started a book club with one of her aides and they would just over Zoom, they would pick a book and they would read out loud and it would take turns reading. And it was so good for Kristen that that has expanded into uh, where they put together flyers, put them out in the LifeWorks agency. James has joined, other people have joined the book club and so Kristen's basically running a book club with the help of her aides once a week. Yeah, and they're like on their, the bigger group. They're on their second book now. I mean Kristen, I don't know how many books her and Usha read, but it's really helped her reading. It's really helped her reading. Now there's other kids that have gotten involved and enjoy it too and so, like the book that they just finished reading, they're getting together at someone's house to watch the movie.
Greta Harrison:Oh, that's great. So do they read on zoom or do they read together?
Melody Rupple:They read on zoom and they take reading.
Greta Harrison:That's great. I'm going to talk to her about that.
Melody Rupple:It's a it's a great. It's been a really great thing, you know and like, uh, I'm in a book club and she knew that and so she and she's always liked to read. It's really evolved into this really fun thing.
Greta Harrison:I love that and I love that, the support that they have. So now, when you brought them home, how long did that last, that they were going back and forth and all of that. I mean, did they get? Did they all get vaccinated Everybody? Oh yeah, ok, so then, initially.
Bob Rupple:Initially, they each went to their own respective parents home, and then, as June said, we all realized they are there, a couple, and they should be together, and so then we worked out, you know, a schedule for them to move back and forth every few days between the different parents.
Greta Harrison:And that lasted for what? A year or so, or less than a year.
Melody Rupple:We couldn't do it for a year.
Bob Rupple:So it continued to evolve back into the apartment. So after Delta kind of diminished, which was more lethal, et cetera, and the virus kept getting weaker, and which was more lethal, et cetera, and the virus kept getting weaker and weaker, although more contagious, we got to where we said, okay, cross our fingers, we're going to have one aid come in, and that aid doesn't have any kids and you know I'm going to wear the mask and the whole thing. And then that eventually expanded out to more aids as the pandemic went on, and to where they were, back in their normal schedule again ultimately and everybody was vaccinated.
Melody Rupple:All the AIDS were vaccinated. You know we they wiped down surfaces, they did all those things. Kristen and James eventually both did get COVID pretty much after it was, but you know, like two and a half three years into it, yeah.
Bob Rupple:And Kristen loved it. She loved having COVID because she has allergies, so she has a cough all the time anyway and all it did was make her cough a little bit worse. But she felt great and she had all the streaming services.
Bob Rupple:She could Zoom with all her friends and do her book club and all this stuff and we would serve her meals at the door, you know, and then she'd put her dirty dishes out and she just stayed in that room for a full week. You know, I had all kinds of you know, hepa conditioners in there and open the windows for fresh air, all kinds of things. But she loved it and uh, because fortunately again it was very mild, you know, for her and uh and I think James had a little harder time maybe.
June Zoul:Yeah, yeah, no, but he, I would say he he did love the TLC in the room service for sure by the time it was over. It was so hard to get a negative test for him to go home. He was ready to go home and we just ultimately let them go home when they were still testing positive but no symptoms for a very long time, when we found that that was the thing to do. So, yeah, we made it. We made it through.
Greta Harrison:You made it through, you had to adapt, and so they've got one more, one more experience under their belt yeah so tell me this are your young adults their own guardians or do they?
June Zoul:do you have powers of attorney with them, or I have a medical, we have medical powers, okay, so they are so so he's his own guardian.
Greta Harrison:Then it's the same with kristin so is krist Kristen.
Melody Rupple:Uh, like I can't speak to whether that's the best choice or not.
Greta Harrison:You know, you kind of go around and around everybody's different and I understand there's different levels of disability and support, but since they're so independent, I just to tell you the truth of because when we set up our living trust, the attorney was you really need to have consumer conservatorship.
Melody Rupple:I don't care how high functioning your kid is, you need to have this. That was her attitude. But Kristen was like 18, 19 years old then. At that point, if we had gone to court and she had to say out loud I'm going to let my parents tell me what to do, she wouldn't have done it. I mean, I don't think she would have done it. She would have said I'm not doing that when. Now, if you could explain it to her and say you know, these are the reasons why I think she'd be fine with it. But we're always on the fence on whether that is the best choice or not. You're more worried about what could come up. I think in the long run, medical power of attorney is probably important.
Greta Harrison:Very, very important. But since Jenny Hatch and her case which, by the way, she lives in my city, her case changed attorneys. They no longer automatically go to that default. They now present the other options first, because it was just the automatic default before. So that has changed. You might not. You know, your attorney might have said something differently if it had been in the last 10 years, I think.
Greta Harrison:Thank you for listening to Episode 22 of Born Fabulous Podcast's 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. You can also hear all released episodes of Born Fabulous Podcast on YouTube. Now In episode 23, you will hear the Zoles and the Ruples discuss the wedding, sex and parenting. Their honesty, mixed with humor, is very refreshing. Please follow and like us on Facebook, instagram, twitter and threads If you enjoyed this episode. I'd be honored if you would leave a review wherever you heard this podcast. Now. Please enjoy this clip. Of love is a potion. The lyrics are by Melissa Riggio, who was the focus of season one, episodes one through four. The music and voice are by Rachel Fuller.
Rachel Fuller:Love is passion. Love never fails, lost in motion.