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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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Greta Harrison (00:00):
Hello, my name is Greta Harrison.
Welcome to Born FabulousPodcast, season 3, episode 22.
The theme of this season isyoung adults with intellectual
disabilities living full livesof independence and
interdependence.
This episode features June andJim Zoll and Melody and Bob
Ruppel.
It is the sixth of eightepisodes with the Zolls and the
(00:23):
Rupels, which is part of anin-depth series about marriage
featuring parents,self-advocates with support
staff and an employer.
Both the Zolls and the Rupelsare retired and have been
married over 40 years.
They are the parents of JamesZoll and Kristen Rupel, who have
been married over five years.
James and Kristen have Downsyndrome.
(00:44):
Now please enjoy this clip.
Of Love is a Potion.
The lyrics are by MelissaRiggio, who was the focus of
Season 1, episodes 1 through 4.
The music and voice are byRachel Fuller.
Love is everything.
Rachel Fuller (01:20):
Love is all around.
Love is all around.
Love is a potion, love ispassion, love is devotion.
Greta Harrison (01:39):
Love is fusion.
It takes three years for you tomake it work.
Are they living together duringthese three years or are they
dating?
Melody Rupple (01:48):
They're just dating.
Greta Harrison (01:49):
They're just dating.
Okay, so then they livetogether for five years and I'm
guessing that's a good trialperiod to see how this is all
going to work right.
Definitely how this is allgoing to work right.
June Zoul (02:02):
Definitely.
I think it's all you know.
For us we just did not reallycomprehend when they started
dating where it was all going togo.
I'll go back to what Melodysaid.
(02:30):
In that we we followed theirlead and what they wanted and we
tried to listen and facilitatewhat they wanted and it just
kind of happened naturally, withour supports and listening to
what it is that they wanted.
When James wanted to move out, Iwas blown away, like Melody,
his first year of living out ofthe house.
I like to say that I criedevery day for a year.
(02:52):
Jim would walk in the door fromwork and I would just cry
because how is he going to besafe?
How is he going to cook?
How is he going to clean?
You allow a support team ofpeople to come in and out of
(03:15):
their apartment to help themlive.
How five or six other adultopinions on how they think your
child should live, how theythink your child should behave
and I say child, but they'reyoung adults but you as a parent
(03:40):
, give up or let them go.
Your role as a parent becomesdifferent when they live on
their own and for me it was alittle challenging to find out
what my role as a parent was.
(04:00):
During that first year it wasvery hard to step back when
other support people hadopinions on things.
Most of the time they werecorrect.
You know that I needed to stepback more, but what I found was
(04:22):
and I still believe today afterthem, living together for 10
years is what I've learned.
For me is that I'm the parentand I will always be the parent,
and that the support people andthe support team they're paid
employees and they're lovely,wonderful people that we grow to
(04:46):
love and trust.
But the bottom line is I'm inhis life forever and there's
still some parenting ideas thatI have that I can honor, because
they will come and go and Iwill always be and no one loves
it like us.
(05:06):
So I've learned that and italmost has given me permission
to continue to be the parent butto still step back and allow,
listen to what it is.
You know that he wants and Ihope that made sense, but it
took me a while to get to thatpoint.
So the first year was a littlechallenging for me.
Greta Harrison (05:29):
Melody and Bob your thoughts.
Melody Rupple (05:32):
I didn't struggle in the ways that June struggled
, I think mainly because ofhaving such a big family that
Kristen already wasn't alwaysthe you know, the main focus.
Kristen doesn't always ask forhelp.
I guess that's the biggestthing for us is.
She's pretty, she considersherself to be pretty competent
(05:55):
and she is.
I mean, she's super organizedand motivated and really the
first year was like when you'refresh, 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 mewhat to do.
(06:16):
I moved out now, you know, Idon't want you bugging me.
I'm an adult, I can do what Iwant to do.
Bob Rupple (06:24):
I mean it was pretty typical story of any you know,
of any you know going off to adorm.
Melody Rupple (06:31):
I mean there really was a lot of that.
So I think for me it was.
It was learning to navigatethat, a way to help her without
overstepping and without herthinking I'm telling her what to
do, which is pretty tough forme because I'm like come on,
(06:52):
kristen, you know this isn'tgoing to work, but she had to
work through that.
You know, even with the AIDSshe's, and still to this day,
that can be a thing we have totalk about.
The AIDS are there to help you.
If you don't have an aid, youcan't live out on your own.
So they're not telling you whatto do.
(07:14):
They're trying to help you.
You know, navigate life and doall the things that you want to
accomplish.
So I think we still work onthat all the time, because you
know she doesn't want to be toldwhat to do.
She wants to be treated like anadult.
So it's a fine line to walk,because she does need help and
(07:35):
she doesn't drive.
And you know they had to learnabout nutrition and all those
things that all young adultshave to learn about.
Greta Harrison (07:48):
So, like you just brought up the nutrition,
and what about grocery shopping?
Who taught Christian how togrocery shop?
Melody Rupple (07:56):
Well, she grocery shopped with her dad because
her dad had to learn to groceryshop when he retired.
Bob Rupple (08:01):
Yeah, I took over a lot of things when I retired.
Nobody went back.
Melody Rupple (08:05):
So he was going well, how do I grocery shop
basically?
Bob Rupple (08:09):
and so him and kristin would do the grocery
shopping well, and kristin and Iare both very, you know,
systematic.
Yeah, so we had charted out allthe aisles and what's where and
that kind of stuff.
And, and to the points thatwe've earlier made, I would take
her and I'd give her the listand I'd drop her off at one
corner of the grocery store andhave her meet me at the other
with a full grocery cart full ofeverything.
(08:30):
And when she got there we'dfigure 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 itall herself.
But they're groceries.
That's a good thing you broughtthat up, because that's so key,
obviously, to grocery shopping.
They can't drive and it's thekey to have food and good food.
When she was at home, I wouldtry to teach her nutrition and
(08:53):
she didn't want anything to dowith it.
Once she moved out and had someaides teaching her about
nutrition, that's a wholedifferent story.
Now, all of a sudden, dad, lookwhat I learned and I'm doing
all these things.
And I said you know all thosethings I've been trying to get
you to do, but you've been toostubborn because I'm telling you
what to do, so you know.
But what they developed reallyis a whole system that June
(09:15):
could walk you through in detailbut it would probably take a
lot of time too.
But they have a whole systemthat they've worked out with the
aides of how they figure outtheir menus, how they figure out
what food they have in thehouse to make certain recipes,
what they need to buy at thestore, you know what's
perishable, what's not.
They go through a whole routineof the stuff brings the food
home and they have like a week'smenu and they cook it all up
(09:39):
and with the help of the aidesand they do better at it than
any of us do that that is forsure.
June Zoul (09:47):
Yeah, they're, they're pretty incredible.
Bob Rupple (09:49):
So they have a whole support system for just the
grocery shopping that's, that'sgreat that you learned.
Greta Harrison (09:54):
You learned how to grocery shop with your
daughter, then yeah right yeah Ithink I think that's great.
I think every husband shouldshould be able to do that.
I still I've been married 43years and I have to send my
husband a picture of the itemand don't get all the husbands
in america mad just saying, justsaying it's a skill, okay, so I
(10:23):
I love that you guys learnedthat together.
Okay, now you mentioned your,the, the support that they have
there.
Okay, give me, uh, give all ofus a, a visual picture.
Like you mentioned, five or sixpeople, I'm assuming that they
rotate, um, how does that work?
(10:46):
Could you give us a picture ofthat?
How many agencies are involved?
Now, just for people who arelistening, 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 (11:04):
June, you want to take that one.
Yeah, that's a good one.
June Zoul (11:06):
So we have it's called a supported living agency
.
We have one.
The supported living agency iscalled LifeWorks, and they're
funded by our regional center.
What the Supported LivingAgency does is they do the
(11:28):
hiring and the paying of ourJames and Kristen's support
staff.
So what the LifeWorks would dois find and interview a person
that they think would be goodfor James and Kristen's team.
They send that person to Jamesand Kristen's home and us
(11:52):
parents meet with James andKristen.
So the six of us will interviewthis person as being a possible
person that will support Jamesand Kristen.
And so, ultimately, the wayJames and Kristen's support team
(12:12):
works, they need to have four,five.
They've had up to six people ontheir team that the Supported
Living Agency hires.
So James and Kristen, it wasdetermined that their support
would come in the form of threedifferent shifts during the
(12:33):
course of one day.
So the first shift might bethrough.
Monday.
Through Friday looks a littledifferent because of work,
because of different things.
Monday through Friday it mightbe three shifts.
It will be a morning shift,maybe through breakfast I'll
just throw these times out there.
(12:55):
They could be different timesand fluctuate.
The first shift might be 8 amto 1 pm, getting them through
breakfast and lunch, if there'sany cooking involved on the
stove, helping them get to theirprospective jobs, housework,
laundry, whatever the day mightbring.
And again those times canfluctuate.
(13:18):
The second shift might be 4 pmto 8 pm getting them through
dinner and more living skills,grocery, shopping, whatever.
Monday through Friday can bevery different.
The third shift is typically 10pm to 6 am.
(13:39):
So they have an overnightperson six days a week.
They do have one night alone.
It's probably their favoritenight of the week because they
have no support person there.
James and Kristen do their best, I think, when they get their
(14:01):
alone time as a couple.
They love to be alone.
So that would be the thirdshift.
The weekends are a littledifferent because it's more
social activities and the timescould be different for the
support staff.
They do their weekly menus onSundays.
(14:24):
It's fine-tuned from the menu.
They do their shopping listsand shop on Mondays.
That's pretty routine.
But other than that, thesupport team and the times that
they work tend to fluctuate toJames and Kristen's needs.
James and Kristen know thatduring the interview process,
(14:48):
when that prospective personcomes to the apartment, they
know that they got the power tohire.
They know.
I mean it's good that they knowthat, but to the point that
anyway, I'm going to get alittle confused here in my
(15:11):
explaining.
It's good to let James andKristen know they've got the
power to do all that, butsometimes it's not so good that
they know they have the power todo all that Does the.
It's not so good that they knowthey have the power to do all
that Does the power go to theirheads a little bit.
Well, yes, and what it does ismake time for conversation as to
why are you having such a hardtime with this support person?
(15:35):
You know the support people.
When they're hired, my hat goesoff to them because they walk
this very fine line of honoringJames and Kristen's independence
and honoring that when theywork, they're coming into James
and Kristen's home and yet theyare also expected to lead James
(15:58):
and Kristen and guide them withthe correct, with the
appropriate behaviors andlearning skills.
And so the support people theydo a great job?
I think they don't.
You know, they don'tnecessarily come in with that
skill, but the support peoplelearn how to support in a
(16:21):
respectful, loving way.
Greta Harrison (16:24):
Do you have trouble?
June Zoul (16:24):
with turnover.
There have been times that wehave.
We don't now We've learnedreally what to look for in
hiring.
We're still learning that wehave had to fire a couple of
people you know over five years.
(16:45):
So we do pretty good withkeeping really good people.
Rachel Fuller (16:52):
There have been a few instances, a few times
where we've been shorthanded andit's been difficult to bring
the team back up to the correctnumber of teams of people and
that doesn't have anything to dowith the team or anything.
Bob Rupple (17:13):
A lot of times it has to do with what's happening
in the economy pandemic variousexternal, various reasons yeah,
you know, etc now that they havethey help with transportation,
right, yes, okay, that's a.
Greta Harrison (17:30):
That's a huge, that's a huge help.
But having said that, in yourconversation, organically,
you've already shown that Jamesand Kristen can ride the train.
They can do many things ontheir own right.
Something very good thepandemic.
(17:54):
How did the pandemic affectthem?
Because that was during theirmarried time.
How did that affect them?
And I skipped the wedding, sowe will definitely have to get
to the wedding too.
I didn't mean to skip that, buttalk about the pandemic and
then we'll talk about thewedding.
Melody Rupple (18:06):
Well, we made the decision to bring them home
just because all those aides hadfamilies of their own and to
have that many people going inand out.
And of course back then wedidn't know you know as much as
we do now and both Kristen andJames are susceptible to
(18:27):
respiratory infections and sothat made us extremely paranoid.
So we lived through it, juneand I talked a lot on the phone.
We rotated they would have itevolved actually.
Bob Rupple (18:44):
But let's go back to rotation, but the same way,
everybody evolved through thepandemic, our approach as the
four parents with our youngadults, evolved too.
So we came up with somedifferent approaches along the
way as the pandemic progressed.
Melody Rupple (19:00):
But basically they would spend you know,
they'd spend like four days heretogether with us and then
they'd go to June's for fourdays and then they might have a
few days where they're separatedand at their parents' house.
But we made the decision thatthey were a married couple and
that they needed to be treatedthat way and that we needed to
(19:21):
keep them together as much aspossible, and so we did it.
It was not easy, especiallywhen you're not used to having
them at home and having to cookevery day and have more
groceries in the house, andespecially for me, like the
cooking every day thing, I'mlike, ah, I'd be calling June
(19:43):
going.
Enough of this.
Bob Rupple (19:45):
I think generally Kristen and James sailed through
it remarkably well.
Yes, you would think they wouldbe really freaked out and their
schedules could be turnedupside down or they wouldn't be
able to handle it.
They just adjusted.
They were so flexible and theyloved living in hotel RuPaul and
hotel, having their laundrydone good stuff.
(20:09):
They could just hang out andyou know so.
June Zoul (20:13):
Yeah, and I might add that we were able to keep most
all of the support people bykeeping them on the payroll by
Zooming.
We really got in.
James and Kristen each gottheir own Zoom accounts to keep
the support people on Zoom.
(20:33):
So there was reading, there wasart, there was cooking.
We did a lot with the supportpeople on Zoom in order to keep
them on the payroll.
That's good.
Bob Rupple (20:46):
They were also able to bring their friends into that
too, whether it was a bookKristen's book club or whatever
you know.
They it expanded to be a greatfacility for the aides, but also
for their friends toparticipate as well.
Melody Rupple (21:01):
And to this day, kristen and her friends Zoom
every Wednesday for half an houreven though COVID's, you know,
dealing with that, they still dothat.
And then Kristen started a bookclub with one of her aides and
(21:22):
they would just over Zoom, theywould pick a book and they would
read out loud and it would taketurns reading.
And it was so good for Kristenthat that has expanded into uh,
where they put together flyers,put them out in the LifeWorks
(21:42):
agency.
James has joined, other peoplehave joined the book club and so
Kristen's basically running abook 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 booknow.
I mean Kristen, I don't knowhow many books her and Usha read
(22:03):
, but it's really helped herreading.
It's really helped her reading.
Now there's other kids thathave gotten involved and enjoy
it too and so, like the bookthat they just finished reading,
they're getting together atsomeone's house to watch the
movie.
Greta Harrison (22:16):
Oh, that's great .
So do they read on zoom or dothey read together?
Melody Rupple (22:20):
They read on zoom and they take reading.
Greta Harrison (22:24):
That's great.
I'm going to talk to her aboutthat.
Melody Rupple (22:27):
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 andso she and she's always liked
to read.
It's really evolved into thisreally fun thing.
Greta Harrison (22:42):
I love that and I love that, the support that
they have.
So now, when you brought themhome, how long did that last,
that they were going back andforth and all of that.
I mean, did they get?
Did they all get vaccinatedEverybody?
Oh yeah, ok, so then, initially.
Bob Rupple (22:59):
Initially, they each went to their own respective
parents home, and then, as Junesaid, we all realized they are
there, a couple, and they shouldbe together, and so then we
worked out, you know, a schedulefor them to move back and forth
every few days between thedifferent parents.
Greta Harrison (23:14):
And that lasted for what?
A year or so, or less than ayear.
Melody Rupple (23:19):
We couldn't do it for a year.
Bob Rupple (23:22):
So it continued to evolve back into the apartment.
So after Delta kind ofdiminished, which was more
lethal, et cetera, and the viruskept getting weaker, and which
was more lethal, et cetera, andthe virus kept getting weaker
and weaker, although morecontagious, we got to where we
said, okay, cross our fingers,we're going to have one aid come
in, and that aid doesn't haveany kids and you know I'm going
(23:46):
to wear the mask and the wholething.
And then that eventuallyexpanded out to more aids as the
pandemic went on, and to wherethey were, back in their normal
schedule again ultimately andeverybody was vaccinated.
Melody Rupple (23:57):
All the AIDS were vaccinated.
You know we they wiped downsurfaces, they did all those
things.
Kristen and James eventuallyboth did get COVID pretty much
after it was, but you know, liketwo and a half three years into
it, yeah.
Bob Rupple (24:12):
And Kristen loved it .
She loved having COVID becauseshe has allergies, so she has a
cough all the time anyway andall it did was make her cough a
little bit worse.
But she felt great and she hadall the streaming services.
She could Zoom with all herfriends and do her book club and
all this stuff and we wouldserve her meals at the door, you
(24:33):
know, and then she'd put herdirty dishes out and she just
stayed in that room for a fullweek.
You know, I had all kinds ofyou know, hepa conditioners in
there and open the windows forfresh air, all kinds of things.
But she loved it and uh,because fortunately again it was
very mild, you know, for herand uh and I think James had a
little harder time maybe.
June Zoul (24:55):
Yeah, yeah, no, but he, I would say he he did love
the TLC in the room service forsure by the time it was over.
It was so hard to get anegative test for him to go home
.
He was ready to go home and wejust ultimately let them go home
(25:15):
when they were still testingpositive but no symptoms for a
very long time, when we foundthat that was the thing to do.
So, yeah, we made it.
We made it through.
Greta Harrison (25:27):
You made it through, you had to adapt, and
so they've got one more, onemore experience under their belt
yeah so tell me this are youryoung adults their own guardians
or do they?
June Zoul (25:39):
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 (25:48):
Then it's the same with kristin so is krist
Kristen.
Melody Rupple (25:53):
Uh, like I can't speak to whether that's the best
choice or not.
Greta Harrison (25:56):
You know, you kind of go around and around
everybody's different and Iunderstand there's different
levels of disability and support, but since they're so
independent, I just to tell youthe truth of because when we set
up our living trust, theattorney was you really need to
have consumer conservatorship.
Melody Rupple (26:16):
I don't care how high functioning your kid is,
you need to have this.
That was her attitude.
But Kristen was like 18, 19years old then.
At that point, if we had goneto court and she had to say out
loud I'm going to let my parentstell me what to do, she
wouldn't have done it.
I mean, I don't think she wouldhave done it.
(26:38):
She would have said I'm notdoing that when.
Now, if you could explain it toher and say you know, these are
the reasons why I think she'dbe fine with it.
But we're always on the fenceon whether that is the best
choice or not.
You're more worried about whatcould come up.
I think in the long run,medical power of attorney is
(27:03):
probably important.
Greta Harrison (27:06):
Very, very important.
But since Jenny Hatch and hercase which, by the way, she
lives in my city, her casechanged attorneys.
They no longer automatically goto that default.
They now present the otheroptions first, because it was
just the automatic defaultbefore.
So that has changed.
(27:27):
You might not.
You know, your attorney mighthave said something differently
if it had been in the last 10years, I think.
Thank you for listening toEpisode 22 of Born Fabulous
Podcast's third season.
I hope you enjoyed it and wantto hear more Short video clips
from most episodes are availableon our YouTube channel and on
(27:49):
BornFabulousPodcastcom.
You can also hear all releasedepisodes of Born Fabulous
Podcast on YouTube.
Now In episode 23, you willhear the Zoles and the Ruples
discuss the wedding, sex andparenting.
Their honesty, mixed with humor, is very refreshing.
Please follow and like us onFacebook, instagram, twitter and
(28:11):
threads If you enjoyed thisepisode.
I'd be honored if you wouldleave a review wherever you
heard this podcast.
Now.
Please enjoy this clip.
Of love is a potion.
The lyrics are by MelissaRiggio, who was the focus of
season one, episodes one throughfour.
The music and voice are byRachel Fuller.
Rachel Fuller (28:30):
Love is passion.
Love never fails, lost inmotion.
Hello, my name is Greta Harrison.
Welcome to Born FabulousPodcast, season 3, episode 22.
The theme of this season isyoung adults with intellectual
disabilities living full livesof independence and
interdependence.
This episode features June andJim Zoll and Melody and Bob
Ruppel.
It is the sixth of eightepisodes with the Zolls and the
(00:23):
Rupels, which is part of anin-depth series about marriage
featuring parents,self-advocates with support
staff and an employer.
Both the Zolls and the Rupelsare retired and have been
married over 40 years.
They are the parents of JamesZoll and Kristen Rupel, who have
been married over five years.
James and Kristen have Downsyndrome.
(00:44):
Now please enjoy this clip.
Of Love is a Potion.
The lyrics are by MelissaRiggio, who was the focus of
Season 1, episodes 1 through 4.
The music and voice are byRachel Fuller.
Love is everything.
Rachel Fuller (01:20):
Love is all around.
Love is all around.
Love is a potion, love ispassion, love is devotion.
Greta Harrison (01:39):
Love is fusion.
It takes three years for you tomake it work.
Are they living together duringthese three years or are they
dating?
Melody Rupple (01:48):
They're just dating.
Greta Harrison (01:49):
They're just dating.
Okay, so then they livetogether for five years and I'm
guessing that's a good trialperiod to see how this is all
going to work right.
Definitely how this is allgoing to work right.
June Zoul (02:02):
Definitely.
I think it's all you know.
For us we just did not reallycomprehend when they started
dating where it was all going togo.
I'll go back to what Melodysaid.
(02:30):
In that we we followed theirlead and what they wanted and we
tried to listen and facilitatewhat they wanted and it just
kind of happened naturally, withour supports and listening to
what it is that they wanted.
When James wanted to move out, Iwas blown away, like Melody,
his first year of living out ofthe house.
I like to say that I criedevery day for a year.
(02:52):
Jim would walk in the door fromwork and I would just cry
because how is he going to besafe?
How is he going to cook?
How is he going to clean?
You allow a support team ofpeople to come in and out of
(03:15):
their apartment to help themlive.
How five or six other adultopinions on how they think your
child should live, how theythink your child should behave
and I say child, but they'reyoung adults but you as a parent
(03:40):
, give up or let them go.
Your role as a parent becomesdifferent when they live on
their own and for me it was alittle challenging to find out
what my role as a parent was.
(04:00):
During that first year it wasvery hard to step back when
other support people hadopinions on things.
Most of the time they werecorrect.
You know that I needed to stepback more, but what I found was
(04:22):
and I still believe today afterthem, living together for 10
years is what I've learned.
For me is that I'm the parentand I will always be the parent,
and that the support people andthe support team they're paid
employees and they're lovely,wonderful people that we grow to
(04:46):
love and trust.
But the bottom line is I'm inhis life forever and there's
still some parenting ideas thatI have that I can honor, because
they will come and go and Iwill always be and no one loves
it like us.
(05:06):
So I've learned that and italmost has given me permission
to continue to be the parent butto still step back and allow,
listen to what it is.
You know that he wants and Ihope that made sense, but it
took me a while to get to thatpoint.
So the first year was a littlechallenging for me.
Greta Harrison (05:29):
Melody and Bob your thoughts.
Melody Rupple (05:32):
I didn't struggle in the ways that June struggled
, I think mainly because ofhaving such a big family that
Kristen already wasn't alwaysthe you know, the main focus.
Kristen doesn't always ask forhelp.
I guess that's the biggestthing for us is.
She's pretty, she considersherself to be pretty competent
(05:55):
and she is.
I mean, she's super organizedand motivated and really the
first year was like when you'refresh, 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 mewhat to do.
(06:16):
I moved out now, you know, Idon't want you bugging me.
I'm an adult, I can do what Iwant to do.
Bob Rupple (06:24):
I mean it was pretty typical story of any you know,
of any you know going off to adorm.
Melody Rupple (06:31):
I mean there really was a lot of that.
So I think for me it was.
It was learning to navigatethat, a way to help her without
overstepping and without herthinking I'm telling her what to
do, which is pretty tough forme because I'm like come on,
(06:52):
kristen, you know this isn'tgoing to work, but she had to
work through that.
You know, even with the AIDSshe's, and still to this day,
that can be a thing we have totalk about.
The AIDS are there to help you.
If you don't have an aid, youcan't live out on your own.
So they're not telling you whatto do.
(07:14):
They're trying to help you.
You know, navigate life and doall the things that you want to
accomplish.
So I think we still work onthat all the time, because you
know she doesn't want to be toldwhat to do.
She wants to be treated like anadult.
So it's a fine line to walk,because she does need help and
(07:35):
she doesn't drive.
And you know they had to learnabout nutrition and all those
things that all young adultshave to learn about.
Greta Harrison (07:48):
So, like you just brought up the nutrition,
and what about grocery shopping?
Who taught Christian how togrocery shop?
Melody Rupple (07:56):
Well, she grocery shopped with her dad because
her dad had to learn to groceryshop when he retired.
Bob Rupple (08:01):
Yeah, I took over a lot of things when I retired.
Nobody went back.
Melody Rupple (08:05):
So he was going well, how do I grocery shop
basically?
Bob Rupple (08:09):
and so him and kristin would do the grocery
shopping well, and kristin and Iare both very, you know,
systematic.
Yeah, so we had charted out allthe aisles and what's where and
that kind of stuff.
And, and to the points thatwe've earlier made, I would take
her and I'd give her the listand I'd drop her off at one
corner of the grocery store andhave her meet me at the other
with a full grocery cart full ofeverything.
(08:30):
And when she got there we'dfigure 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 itall herself.
But they're groceries.
That's a good thing you broughtthat up, because that's so key,
obviously, to grocery shopping.
They can't drive and it's thekey to have food and good food.
When she was at home, I wouldtry to teach her nutrition and
(08:53):
she didn't want anything to dowith it.
Once she moved out and had someaides teaching her about
nutrition, that's a wholedifferent story.
Now, all of a sudden, dad, lookwhat I learned and I'm doing
all these things.
And I said you know all thosethings I've been trying to get
you to do, but you've been toostubborn because I'm telling you
what to do, so you know.
But what they developed reallyis a whole system that June
(09:15):
could walk you through in detailbut it would probably take a
lot of time too.
But they have a whole systemthat they've worked out with the
aides of how they figure outtheir menus, how they figure out
what food they have in thehouse to make certain recipes,
what they need to buy at thestore, you know what's
perishable, what's not.
They go through a whole routineof the stuff brings the food
home and they have like a week'smenu and they cook it all up
(09:39):
and with the help of the aidesand they do better at it than
any of us do that that is forsure.
June Zoul (09:47):
Yeah, they're, they're pretty incredible.
Bob Rupple (09:49):
So they have a whole support system for just the
grocery shopping that's, that'sgreat that you learned.
Greta Harrison (09:54):
You learned how to grocery shop with your
daughter, then yeah right yeah Ithink I think that's great.
I think every husband shouldshould be able to do that.
I still I've been married 43years and I have to send my
husband a picture of the itemand don't get all the husbands
in america mad just saying, justsaying it's a skill, okay, so I
(10:23):
I love that you guys learnedthat together.
Okay, now you mentioned your,the, the support that they have
there.
Okay, give me, uh, give all ofus a, a visual picture.
Like you mentioned, five or sixpeople, I'm assuming that they
rotate, um, how does that work?
(10:46):
Could you give us a picture ofthat?
How many agencies are involved?
Now, just for people who arelistening, 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 (11:04):
June, you want to take that one.
Yeah, that's a good one.
June Zoul (11:06):
So we have it's called a supported living agency
.
We have one.
The supported living agency iscalled LifeWorks, and they're
funded by our regional center.
What the Supported LivingAgency does is they do the
(11:28):
hiring and the paying of ourJames and Kristen's support
staff.
So what the LifeWorks would dois find and interview a person
that they think would be goodfor James and Kristen's team.
They send that person to Jamesand Kristen's home and us
(11:52):
parents meet with James andKristen.
So the six of us will interviewthis person as being a possible
person that will support Jamesand Kristen.
And so, ultimately, the wayJames and Kristen's support team
(12:12):
works, they need to have four,five.
They've had up to six people ontheir team that the Supported
Living Agency hires.
So James and Kristen, it wasdetermined that their support
would come in the form of threedifferent shifts during the
(12:33):
course of one day.
So the first shift might bethrough.
Monday.
Through Friday looks a littledifferent because of work,
because of different things.
Monday through Friday it mightbe three shifts.
It will be a morning shift,maybe through breakfast I'll
just throw these times out there.
(12:55):
They could be different timesand fluctuate.
The first shift might be 8 amto 1 pm, getting them through
breakfast and lunch, if there'sany cooking involved on the
stove, helping them get to theirprospective jobs, housework,
laundry, whatever the day mightbring.
And again those times canfluctuate.
(13:18):
The second shift might be 4 pmto 8 pm getting them through
dinner and more living skills,grocery, shopping, whatever.
Monday through Friday can bevery different.
The third shift is typically 10pm to 6 am.
(13:39):
So they have an overnightperson six days a week.
They do have one night alone.
It's probably their favoritenight of the week because they
have no support person there.
James and Kristen do their best, I think, when they get their
(14:01):
alone time as a couple.
They love to be alone.
So that would be the thirdshift.
The weekends are a littledifferent because it's more
social activities and the timescould be different for the
support staff.
They do their weekly menus onSundays.
(14:24):
It's fine-tuned from the menu.
They do their shopping listsand shop on Mondays.
That's pretty routine.
But other than that, thesupport team and the times that
they work tend to fluctuate toJames and Kristen's needs.
James and Kristen know thatduring the interview process,
(14:48):
when that prospective personcomes to the apartment, they
know that they got the power tohire.
They know.
I mean it's good that they knowthat, but to the point that
anyway, I'm going to get alittle confused here in my
(15:11):
explaining.
It's good to let James andKristen know they've got the
power to do all that, butsometimes it's not so good that
they know they have the power todo all that Does the.
It's not so good that they knowthey have the power to do all
that Does the power go to theirheads a little bit.
Well, yes, and what it does ismake time for conversation as to
why are you having such a hardtime with this support person?
(15:35):
You know the support people.
When they're hired, my hat goesoff to them because they walk
this very fine line of honoringJames and Kristen's independence
and honoring that when theywork, they're coming into James
and Kristen's home and yet theyare also expected to lead James
(15:58):
and Kristen and guide them withthe correct, with the
appropriate behaviors andlearning skills.
And so the support people theydo a great job?
I think they don't.
You know, they don'tnecessarily come in with that
skill, but the support peoplelearn how to support in a
(16:21):
respectful, loving way.
Greta Harrison (16:24):
Do you have trouble?
June Zoul (16:24):
with turnover.
There have been times that wehave.
We don't now We've learnedreally what to look for in
hiring.
We're still learning that wehave had to fire a couple of
people you know over five years.
(16:45):
So we do pretty good withkeeping really good people.
Rachel Fuller (16:52):
There have been a few instances, a few times
where we've been shorthanded andit's been difficult to bring
the team back up to the correctnumber of teams of people and
that doesn't have anything to dowith the team or anything.
Bob Rupple (17:13):
A lot of times it has to do with what's happening
in the economy pandemic variousexternal, various reasons yeah,
you know, etc now that they havethey help with transportation,
right, yes, okay, that's a.
Greta Harrison (17:30):
That's a huge, that's a huge help.
But having said that, in yourconversation, organically,
you've already shown that Jamesand Kristen can ride the train.
They can do many things ontheir own right.
Something very good thepandemic.
(17:54):
How did the pandemic affectthem?
Because that was during theirmarried time.
How did that affect them?
And I skipped the wedding, sowe will definitely have to get
to the wedding too.
I didn't mean to skip that, buttalk about the pandemic and
then we'll talk about thewedding.
Melody Rupple (18:06):
Well, we made the decision to bring them home
just because all those aides hadfamilies of their own and to
have that many people going inand out.
And of course back then wedidn't know you know as much as
we do now and both Kristen andJames are susceptible to
(18:27):
respiratory infections and sothat made us extremely paranoid.
So we lived through it, juneand I talked a lot on the phone.
We rotated they would have itevolved actually.
Bob Rupple (18:44):
But let's go back to rotation, but the same way,
everybody evolved through thepandemic, our approach as the
four parents with our youngadults, evolved too.
So we came up with somedifferent approaches along the
way as the pandemic progressed.
Melody Rupple (19:00):
But basically they would spend you know,
they'd spend like four days heretogether with us and then
they'd go to June's for fourdays and then they might have a
few days where they're separatedand at their parents' house.
But we made the decision thatthey were a married couple and
that they needed to be treatedthat way and that we needed to
(19:21):
keep them together as much aspossible, and so we did it.
It was not easy, especiallywhen you're not used to having
them at home and having to cookevery day and have more
groceries in the house, andespecially for me, like the
cooking every day thing, I'mlike, ah, I'd be calling June
(19:43):
going.
Enough of this.
Bob Rupple (19:45):
I think generally Kristen and James sailed through
it remarkably well.
Yes, you would think they wouldbe really freaked out and their
schedules could be turnedupside down or they wouldn't be
able to handle it.
They just adjusted.
They were so flexible and theyloved living in hotel RuPaul and
hotel, having their laundrydone good stuff.
(20:09):
They could just hang out andyou know so.
June Zoul (20:13):
Yeah, and I might add that we were able to keep most
all of the support people bykeeping them on the payroll by
Zooming.
We really got in.
James and Kristen each gottheir own Zoom accounts to keep
the support people on Zoom.
(20:33):
So there was reading, there wasart, there was cooking.
We did a lot with the supportpeople on Zoom in order to keep
them on the payroll.
That's good.
Bob Rupple (20:46):
They were also able to bring their friends into that
too, whether it was a bookKristen's book club or whatever
you know.
They it expanded to be a greatfacility for the aides, but also
for their friends toparticipate as well.
Melody Rupple (21:01):
And to this day, kristen and her friends Zoom
every Wednesday for half an houreven though COVID's, you know,
dealing with that, they still dothat.
And then Kristen started a bookclub with one of her aides and
(21:22):
they would just over Zoom, theywould pick a book and they would
read out loud and it would taketurns reading.
And it was so good for Kristenthat that has expanded into uh,
where they put together flyers,put them out in the LifeWorks
(21:42):
agency.
James has joined, other peoplehave joined the book club and so
Kristen's basically running abook 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 booknow.
I mean Kristen, I don't knowhow many books her and Usha read
(22:03):
, but it's really helped herreading.
It's really helped her reading.
Now there's other kids thathave gotten involved and enjoy
it too and so, like the bookthat they just finished reading,
they're getting together atsomeone's house to watch the
movie.
Greta Harrison (22:16):
Oh, that's great .
So do they read on zoom or dothey read together?
Melody Rupple (22:20):
They read on zoom and they take reading.
Greta Harrison (22:24):
That's great.
I'm going to talk to her aboutthat.
Melody Rupple (22:27):
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 andso she and she's always liked
to read.
It's really evolved into thisreally fun thing.
Greta Harrison (22:42):
I love that and I love that, the support that
they have.
So now, when you brought themhome, how long did that last,
that they were going back andforth and all of that.
I mean, did they get?
Did they all get vaccinatedEverybody?
Oh yeah, ok, so then, initially.
Bob Rupple (22:59):
Initially, they each went to their own respective
parents home, and then, as Junesaid, we all realized they are
there, a couple, and they shouldbe together, and so then we
worked out, you know, a schedulefor them to move back and forth
every few days between thedifferent parents.
Greta Harrison (23:14):
And that lasted for what?
A year or so, or less than ayear.
Melody Rupple (23:19):
We couldn't do it for a year.
Bob Rupple (23:22):
So it continued to evolve back into the apartment.
So after Delta kind ofdiminished, which was more
lethal, et cetera, and the viruskept getting weaker, and which
was more lethal, et cetera, andthe virus kept getting weaker
and weaker, although morecontagious, we got to where we
said, okay, cross our fingers,we're going to have one aid come
in, and that aid doesn't haveany kids and you know I'm going
(23:46):
to wear the mask and the wholething.
And then that eventuallyexpanded out to more aids as the
pandemic went on, and to wherethey were, back in their normal
schedule again ultimately andeverybody was vaccinated.
Melody Rupple (23:57):
All the AIDS were vaccinated.
You know we they wiped downsurfaces, they did all those
things.
Kristen and James eventuallyboth did get COVID pretty much
after it was, but you know, liketwo and a half three years into
it, yeah.
Bob Rupple (24:12):
And Kristen loved it .
She loved having COVID becauseshe has allergies, so she has a
cough all the time anyway andall it did was make her cough a
little bit worse.
But she felt great and she hadall the streaming services.
She could Zoom with all herfriends and do her book club and
all this stuff and we wouldserve her meals at the door, you
(24:33):
know, and then she'd put herdirty dishes out and she just
stayed in that room for a fullweek.
You know, I had all kinds ofyou know, hepa conditioners in
there and open the windows forfresh air, all kinds of things.
But she loved it and uh,because fortunately again it was
very mild, you know, for herand uh and I think James had a
little harder time maybe.
June Zoul (24:55):
Yeah, yeah, no, but he, I would say he he did love
the TLC in the room service forsure by the time it was over.
It was so hard to get anegative test for him to go home
.
He was ready to go home and wejust ultimately let them go home
(25:15):
when they were still testingpositive but no symptoms for a
very long time, when we foundthat that was the thing to do.
So, yeah, we made it.
We made it through.
Greta Harrison (25:27):
You made it through, you had to adapt, and
so they've got one more, onemore experience under their belt
yeah so tell me this are youryoung adults their own guardians
or do they?
June Zoul (25:39):
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 (25:48):
Then it's the same with kristin so is krist
Kristen.
Melody Rupple (25:53):
Uh, like I can't speak to whether that's the best
choice or not.
Greta Harrison (25:56):
You know, you kind of go around and around
everybody's different and Iunderstand there's different
levels of disability and support, but since they're so
independent, I just to tell youthe truth of because when we set
up our living trust, theattorney was you really need to
have consumer conservatorship.
Melody Rupple (26:16):
I don't care how high functioning your kid is,
you need to have this.
That was her attitude.
But Kristen was like 18, 19years old then.
At that point, if we had goneto court and she had to say out
loud I'm going to let my parentstell me what to do, she
wouldn't have done it.
I mean, I don't think she wouldhave done it.
(26:38):
She would have said I'm notdoing that when.
Now, if you could explain it toher and say you know, these are
the reasons why I think she'dbe fine with it.
But we're always on the fenceon whether that is the best
choice or not.
You're more worried about whatcould come up.
I think in the long run,medical power of attorney is
(27:03):
probably important.
Greta Harrison (27:06):
Very, very important.
But since Jenny Hatch and hercase which, by the way, she
lives in my city, her casechanged attorneys.
They no longer automatically goto that default.
They now present the otheroptions first, because it was
just the automatic defaultbefore.
So that has changed.
(27:27):
You might not.
You know, your attorney mighthave said something differently
if it had been in the last 10years, I think.
Thank you for listening toEpisode 22 of Born Fabulous
Podcast's third season.
I hope you enjoyed it and wantto hear more Short video clips
from most episodes are availableon our YouTube channel and on
(27:49):
BornFabulousPodcastcom.
You can also hear all releasedepisodes of Born Fabulous
Podcast on YouTube.
Now In episode 23, you willhear the Zoles and the Ruples
discuss the wedding, sex andparenting.
Their honesty, mixed with humor, is very refreshing.
Please follow and like us onFacebook, instagram, twitter and
(28:11):
threads If you enjoyed thisepisode.
I'd be honored if you wouldleave a review wherever you
heard this podcast.
Now.
Please enjoy this clip.
Of love is a potion.
The lyrics are by MelissaRiggio, who was the focus of
season one, episodes one throughfour.
The music and voice are byRachel Fuller.
Rachel Fuller (28:30):
Love is passion.
Love never fails, lost inmotion.
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