August 12, 2024 • 32 mins
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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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:01):
Hello, my name is Greta Harrison.
Welcome to Born FabulousPodcast, Season 3, Episode 17.
The theme of this season isyoung adults with intellectual
disabilities living full livesof independence and
interdependence.
After 16 episodes featuringthree self-advocates, now you
will hear an in-depth seriesabout marriage, featuring
(00:23):
parents, self-advocates withsupport staff and an employer.
This is the first of eightepisodes, with June and Jim
Soule and Melody and Bob Ruppel.
Both couples are retired andhave been married over 40 years.
They are the parents of Jamesand Kristen Ruppel, who have
been married over five years.
James and Kristen have Downsyndrome.
(00:46):
This episode won't have anymusic at the beginning or end
because of its length and theunusual beginning.
Before I start an interview, Ialways press record to get
casual chit-chat that may becomerelevant.
After this introduction, youwill hear a casual conversation
where the Ruples were discussingtheir former careers.
(01:06):
Bob had just finished tellingme his story and then he segued
to Melody.
Here is her story.
Speaker 3 (01:20):
And Melody had a thriving career until Krista
back to work and managing somegovernment contracts that
addressed actually fullinclusion for special needs
children in a regular classroom.
So although I did the financialpart of it, it was a very
rewarding job.
Speaker 1 (01:42):
That is great, See, I'm glad I asked that question.
So the government.
Okay, if you could tell me justa little bit more about that.
Speaker 3 (01:52):
Have you heard of the company WestEd?
I have not.
They're pretty well known ineducation throughout all the
states, all the states.
But they manage grants thataddress needs of kids from birth
(02:12):
through college.
And my boss believed in fullinclusion for our children and
really spent her career workingtowards that.
So they trained teachers how towork with kids with special
(02:34):
needs, but not just that, thewhole emotional, behavioral
element, and so it has gone intokids 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 workwith those kids, giving them
(02:59):
more confidence in theirteaching skills, and it's a
great program.
Speaker 1 (03:04):
And it's still around .
Speaker 3 (03:06):
Oh yeah, oh yeah.
If you look up WestEd you'llget all kinds of information.
Speaker 1 (03:23):
Okay, well, that's great.
Well, you know, when I get tothe part where I'm asking about
when they're little in theirschool years, you can certainly
mention what you just said,because I'm sure that helped you
making.
Speaker 3 (03:30):
Well, I didn't do that till after I went back to
work.
I took a break in betweenhaving three little kids and a
teenager at home three littlekids and a teenager at home.
(03:51):
And so when I went back to work, I went to work for this
company and but I met my boss atthe bus stop and after, when
Kristen was riding the bus, andfrom there, you know, she had me
talk at her junior collegeclasses and and she always
offered me a job, like everyyear for five years, and then
(04:14):
one year when I had one too manyexpenses, I said yes.
Speaker 1 (04:18):
So how old was Kristen when you started working
for them?
Um, I think she was about 14.
How old was Kristen when youstarted working for them?
Just estimated, I think she wasabout 14.
Okay, so when she was little,when she was like eight or nine,
you met this lady at the busstop.
Yeah, you need to work thatstory into what we talk about.
Okay, that's great because itdoes show about connections and
(04:44):
how and the knowledge and theknowledge that we have to
accumulate as parents to haveour kids included, how that's
valuable and she knew that andshe tapped into that, so you
definitely need to mention that.
Speaker 2 (04:59):
And it's generational , because now our oldest
daughter, nicole, is working forthat company too along with us.
Speaker 3 (05:05):
That's great, and she's a teacher as well, and
she's a teacher, so she'sactually a trainer.
Speaker 1 (05:09):
That's great.
And now Episode 17 officiallybegins.
Hello everybody, I am very,very happy to be able to
introduce you to two wonderfulset of parents they each have a
young adult with Down syndromeand who are married to each
(05:32):
other, and they make that workand they're going to share with
us some of the secrets of theirjourney and how this has all
played out.
So I want to introduce you toJim and June Zoll, melody and
Bob Ruppel.
So hello everybody.
(05:52):
Thank you for being with ustoday.
You're welcome.
So I want to start out withtalking about the journeys of
your beautiful, beautiful youngadults.
I'm so grateful that you'rewilling to share their journeys
with us.
If you could talk about theirbirth story, it doesn't matter
(06:16):
to me which one of you startsfirst.
Whoever wants.
Speaker 4 (06:21):
Well, I'll go ahead.
James, when James was born, wedidn't have any idea that he had
Down syndrome before he wasborn.
But immediately when he wasdelivered, the doctor suspected,
(06:43):
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 withother moms that were recovering
and the doctor said, oh no,let's put her in this private
room.
And the minute they did that Ikind of had a feeling that
(07:06):
something wasn't quite right.
And, sure enough, the doctorcame in immediately and told us
that his suspicion was thatJames had Down syndrome.
We have an older daughter, 10years older than James.
We tried for 10 years to have ababy and lost three.
(07:26):
James's birth was my final try.
So when James was delivered, Iwas thrilled to have a baby.
I didn't care about any of thenews that he was suspected he
had Down syndrome.
(07:47):
I was elated At that moment.
There wasn't anything thatcould have made me feel any
different.
So the people around me were mymother, my sisters, everyone
else took it much harder than meAgain, because I think we had
tried so hard to just have ababy that I was thrilled.
(08:11):
So James's health at birth wasreally quite good.
He had jaundice, he haddysplasia.
His hips Stayed in the hospitalfor a few days because of
jaundice, but his heart was good.
(08:32):
Those were really the only twohealth issues at his birth.
I remember the week that hestayed at the hospital five days
(08:54):
.
They wanted to give him abottle.
He wasn't sucking from mybreast and I had read to not do
that because once he startedsucking from a bottle it was so
much easier.
So I remember going to thehospital every three hours to
try to get him to nurse for afew days and ultimately what I
did was get a wash rag and icecold water and have him at my
(09:18):
breast and touch the wash rag tohis face.
And it startled him enough togo and he would suck.
So I went out, I told thenurses no bottles and uh, james
actually breastfed for the firstyear and uh went right to a cup
(09:55):
.
So his birth was good, hishealth was good.
Yeah, that was about it for hisbirth story.
Speaker 1 (09:58):
Came home and we started with all the stuff that
you do.
Before I get into all thatstuff that you do, I want to ask
Jim, sometimes it's differentfor the father and the mother
how that birth story starts, sohow was that for you when this
happened?
Speaker 5 (10:29):
very interesting to to have somebody come out almost
immediately, a doctor come outand tell you you know this
diagnosis of your baby and, uh,like june said, we were, we were
just so thrilled to finallyhave had had a little baby.
That, um, that reallyprioritized the situation more
than anything else.
Um, whatever the facts were,you know we were gonna, we would
(10:56):
deal with whatever we had todeal with and you know wasn't
going to get us down and that'spretty much the way we have
lived James' entire life.
He's more than anything, he wasa blessing.
So OK we were very happy to havehim and still are.
Speaker 1 (11:24):
And he is how old now .
Speaker 5 (11:26):
James was.
He'll be thirty nine in October.
Speaker 1 (11:31):
OK, we will get into the.
The other stuff after they'reborn, after we hear the RuPaul's
story.
The other stuff after they'reborn, after we hear the Rupel
story.
Speaker 3 (11:44):
So Melody and Bob, so Kristen was a quick birth I
seem to have my kids pretty fastand so you know, the doctor
barely made it into the room.
He literally didn't have timeto put his jacket on, or he had
(12:07):
his shirt and his tie and he ranin and she was just delivered.
The nurses thought they weregoing to have to deliver her and
so no one said anything rightaway.
And you know, we met her andthen they took her in to get her
(12:27):
cleaned up and we had been atthe hospital about three hours
and Bob went home to take ashower, home to take a shower,
and it was really the nursesthat suspected it and contacted
(12:47):
the doctor at the, and it was apediatrician that was on call.
And so he came in and told meand and I can't say my reaction
was as good as June's.
You know, I mean I was pretty,you know I was 32.
(13:07):
I never, you know, you worryabout, oh, my kid could be blind
or deaf, but I'm not 35.
So you know we're prettyshocked, and so I had to call
Bob at home to tell him, andthen he came back from the
hospital, but she was veryhealthy.
(13:29):
She didn't have any healthproblems.
She had a good APGAR score.
She breastfed In fact she wasvery stubborn about that and
would never take a bottle.
But I really think for me ittook a full year to adjust to
(13:53):
the idea and you know that youjust are going on a different
journey, a different picturethan you had for that child.
And my daughter, nicole, was 12then and one day she says to me
Mom, you think you're the onlyperson that ever had a baby with
(14:16):
Down syndrome.
You basically get it togetherhere, and so I think part of the
struggle was that I already hadNicole when we got married and
that for Bob not to have thatbirth experience the exciting
(14:38):
birth experience was difficultfor me.
Bob, on the other hand,adjusted much more quickly.
Speaker 1 (14:45):
Bob you want to tell us how this was for you.
Speaker 2 (14:48):
Sure, so well.
It's a few stories I probablyshouldn't say on the camera, but
I was in the room when Kristenwas born and, as Melody said,
the nurses were pretty franticthat they thought they were
going to have to deliver it.
And it was absolutely as Melodydescribed.
He came running in ripping offhis tie and, boom, caught
(15:10):
Kristen just in time coming out.
But for me, first of all, I wasjust ecstatic.
Of course this was my first andI didn't know anything about
babies and I didn't, you know, Iwas just a dumb guy that you
know, got married and was goingto find himself a father, to be
a father.
But when Kristen was born, Iimmediately sensed something
(15:34):
wasn't right.
But having no experience aboutanything, I had no idea what it
might be and I thought what do Iknow?
I don't, I've never seen anewborn baby, you know,
immediately after birth before.
So I didn't really give it muchthought at all, I mean, it just
looped on.
But I did remember, I rememberhaving that sense that she
(15:56):
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
(16:16):
really quick too and I justsaid, you know, okay, we don't
have the daughter we thought wewere going to have, but we have
this daughter and, uh, and westarted that journey together
and it's been incrediblydifficult and incredibly
rewarding.
And, um, here we are.
Speaker 1 (16:38):
More rewarding than words can ever say right, oh,
yeah, right, yeah, and I'm surethat both james and kristin were
beautiful babies.
Yeah, I'm sure, yeah, you knowthose years.
I always, when I talk to ayoung mom, I'm like don't, don't
, don't worry so much, justenjoy this time right now, just
(16:59):
enjoy it.
Yeah, right now, just enjoy ityeah.
I wished I'd enjoyed it a littlebit 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 earlyyears, when they're toddlers and
(17:19):
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 preschoolIf they went to preschool, that
kind of stuff.
Speaker 3 (17:34):
Yeah, well, kristen, really by three months, maybe
even a little bit earlier.
We had, you know, we hadcontacted regional center and we
had like a physical therapistcoming to our house and, you
know, giving me exercises andthings to help return and get
(17:58):
stronger and all that.
I feel like maybe about a yearshe started at the ARC in a
preschool program or like a babyprogram really with other kids
with disabilities, and reallysome of those people are still
(18:22):
my friends today.
I mean, the girls all grew uptogether and I still see those
parents all the time and youknow.
So she went there at the arctill she was about two and a
half years old, you know, andshe could by then.
(18:49):
She didn't walk until she wastwo, but she probably could have
.
This is Kristen, because whenshe decided to walk she got up
and walked into the next room.
Kristen doesn't like to doanything until she's sure she
can be perfect at it.
Anything until she's sure shecan be perfect at it.
(19:11):
And you know.
So she learned to play withkids.
She, you know, could recognizeher name.
She could recognize all thenames of all the kids in the
classroom.
She has a really good memory.
And then, when she was two anda half she was ready to
(19:35):
transition out of that program.
And so they send psychologiststo test your kids, which is just
such an arbitrary system ofsomeone walking into a room that
doesn't know your child andexpect your child to perform.
(19:57):
And so when Kristen, when thepsychologist, got to an IQ of 70
, she quit testing her.
Now I'm not saying that Kristenhas a normal IQ, but as a baby
she was really a pretty togetherlittle kid.
(20:17):
And so the director came to meand she said she just quit
testing her because she hadn'thad someone test that high.
You've got to make her test heragain.
So they came back in and theygave her the test of what they
would give deaf children and shetested in a normal range.
(20:42):
So regional center at thatpoint had absolutely no program
for her.
So they actually paid for herto go to a regular preschool
three days a week.
Wow, now, once she was donewith that, they did have better
programs to offer, but sheactually transitioned into a
regular preschool that was happyto take her and she was there
(21:04):
till she was five years old.
Speaker 1 (21:08):
Now, did you know, before this happened, that you
were going to want to go on aninclusive journey?
Did you know that?
Speaker 3 (21:17):
at that time?
Oh no, no, you didn't know.
I mean, our doctor told us thatKrista might not walk or talk.
Speaker 2 (21:23):
We'd have to feed her .
Speaker 3 (21:24):
You know.
So we had no idea what toexpect.
So we had no idea what toexpect.
The full inclusion journeycomes a little farther down the
road, once she got into publicschool.
Speaker 1 (21:40):
But really it started then?
Well, yes, Because she went toa regular preschool.
Speaker 3 (21:47):
Yeah.
Speaker 1 (21:51):
So I see what you're saying.
Your mindset started furtherdown, but you were already led
to it when it came to preschool,which is great, Because in 2023
, which is when we're doing thisinterview there are thousands
and thousands and thousands ofparents fighting to have their
child included in preschool tothis day.
Speaker 3 (22:10):
To this day To this day, to this day yeah.
Speaker 1 (22:12):
To this day Now, my daughter was included, but you
know we're exceptions, we're allexceptions, so I think it's
important to stay.
And how old is Kristen rightnow?
Speaker 3 (22:23):
She's 38.
Speaker 1 (22:24):
Okay, so we have a 38 and a 39-year-old young adult.
Well, I don't know, when do westop saying young adult At 40?
I don't know, I don't know.
We have a 38 or a 39-year-oldadult young adult who were
included.
Why can't we do that in 2023?
(22:45):
You know this is crazy.
So all right, so that'sinteresting.
But before I I go back to juneand jim, uh, melody and and bob
you told me that she walked ittoo.
Were her other milestonespretty similar to what her
milestone should have been when?
(23:07):
she was a baby and developingWell.
Speaker 3 (23:09):
I'm sure she was a little late on everything, but
Kristen really has a really goodmemory and so, like that served
her well.
She like, in that art class shehad memorized all the kids'
name tags that was our way ofteaching names and she would
actually pick them up and takethem to all the kids.
(23:29):
Name tags that was our way ofteaching names, and she would
actually pick them up and takethem to all the kids and the
teachers were like, oh, you know, she learned to sign before she
spoke, and by this time I waspregnant with Lisa too, and so
(23:53):
you know, life was busy.
But you know, she, she was she.
I wouldn't say she was right ontarget, but she was still.
She was doing well she waspretty close.
Speaker 1 (24:07):
Yeah, yeah, and, and, and, what, what?
How old was she when shestarted to speak, do you think?
Speaker 3 (24:15):
Maybe 18 months Okay.
Speaker 2 (24:21):
But we learned pretty early from what the doctor told
us was likely to happen.
The doctor told us was likelyto happen, which was not at all
what happened, and from thosetesting experiences to listen to
(24:42):
the professionals and then justforget about what they said.
And our attitude was Kristenwill do what Kristen is going to
do and we're not setting anyboundaries for what she can
achieve.
She will set her own boundariesand that every kid is different
.
Yeah, whatever she was going todo, she was going to do.
Speaker 1 (24:59):
And you know, I've heard many parents of of adults
say exactly what you just said.
You cannot let what theprofessionals, who still seem to
be outdated in many ways, inmany instances, dictate your
expectations.
The saying that my daughter andI have is no one ever rose to
low expectations.
So you would think the medicalprofessionals would know that,
(25:23):
but they don't.
So okay, on to June and Jim.
Let's hear about James's earlyyears.
Speaker 5 (25:35):
Go ahead.
Speaker 4 (25:35):
I think they were very similar to Kristen somewhat
in that James started with theregional center For him.
It was called the Early Infantstem program in san diego.
I actually took him to a littleclass there with other babies
early on um the uh, and so weparticipated in the programs at
(26:04):
the art and the same programs Ithink that Melody might have
been in.
I don't know how we missed eachother, but we did a preschool
program.
It was not inclusive, it was apreschool for all disabled
preschoolers.
He participated in that fromabout three to five years of age
(26:39):
.
He started getting transportedby the school district, one
thing that I did my firstinteraction with the school
district.
They wanted to pick James up ina little school bus and take
him to his preschool class.
(27:00):
But the bus had no seatbelts onthe bus and I remember my first
time contacting the special eddirector going what are you
doing?
I'm not going to put my childon a bus with no seatbelts.
So they did ultimately getseatbelts on the buses for kids
(27:21):
in our school district.
But yeah, it was a greatpreschool experience for James,
but not inclusive at all.
So, knowing what I know now, Iwished that at that early age he
would have had that experienceof inclusion with regular peers.
(27:45):
I think you can only learn.
You know those correct socialbehaviors being around other
kids with regular socialbehaviors, you in a book or
whatever, but that's what.
Um, I know that now and but um,let's see.
Speaker 1 (28:11):
I like your quote that you can't be taught that in
a book, because that's true.
You know, I always say that thebenefits of inclusion in school
are um and now the right wordis escaping me but they are
subliminal really.
I mean, and there's so manythat you can't articulate that
(28:33):
even come up later in life, andnot just for my daughter, but
many.
I think there's a quieter senseof confidence.
It's just a natural, quietersense of confidence, just
because of her environment, justbecause of that.
There's so many things, but Ilike that.
(28:53):
You your quote.
You can't teach that in a book.
Speaker 4 (28:57):
I used that quote at so many IEP meetings because it
was so important to me for himto learn all of that, to be able
to live in life.
You can't be segregated fromthat and try to be taught that
(29:18):
you have to live it.
So I used that a lot.
Speaker 1 (29:23):
That's great.
So did he.
Do you remember when he talkedand when he walked?
Speaker 4 (29:29):
He walked at two years of age, the same as
Kristen.
He never learned to crawl.
Interestingly enough, he was aroller, 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 andfor all he may be stubborn, I
(29:50):
don't know, maybe rolling waseasier.
Speaker 5 (29:52):
The dysplasia the dysplasia.
The dysplasia.
Speaker 4 (29:55):
Yeah, so he walked it too and James has a stutter
where he gets stuck on words.
It's over the years has becomeso much better.
A lot of speech therapy, thingslike that but his talking has
(30:17):
always in his early years wereone and two word utterances.
It wasn't sentence type.
So talking we're really one andtwo words for you know,
probably tell elementary schoolfor sure.
Speaker 1 (30:38):
And you think he started at age one or around
that.
Yeah, yeah, you know Okay.
So yeah, and the reason I askthese questions is younger
parents.
You know they they can't getout of the habit of those
milestones and targeting.
But I remember reading a bookbecause we were fortunate to
know ahead of time, so we hadthat time before my daughter was
(31:01):
born to do the research and Iremember reading one book that
said your baby is still abeautiful baby and it really
doesn't matter when theirmilestones are.
They will still have thosemilestones and I remember
thinking that was just sowonderful.
So that's why I hope the youngparents will enjoy this time, no
matter when their milestoneshappen yeah, so that's great.
(31:24):
Milestones happen yeah, so sothat's that's great.
Thank you for listening toepisode 17 of Born Fabulous
podcast, third season.
I hope you enjoyed it and wantto hear more short video clips
from most episodes are availableon our YouTube channel and on
bornfabulouspodcastcom.
In episode 18, you will hearthe Zoles and and the Ruppels
(31:44):
discuss James and Kristen'sschool years, advocating for
full inclusion, iep meetings andmore, mixed with some good
examples and stories.
Please follow and like us onFacebook, instagram and Twitter.
If you enjoyed this episode.
I'd be honored if you wouldleave a review wherever you
heard this podcast.
Hello, my name is Greta Harrison.
Welcome to Born FabulousPodcast, Season 3, Episode 17.
The theme of this season isyoung adults with intellectual
disabilities living full livesof independence and
interdependence.
After 16 episodes featuringthree self-advocates, now you
will hear an in-depth seriesabout marriage, featuring
(00:23):
parents, self-advocates withsupport staff and an employer.
This is the first of eightepisodes, with June and Jim
Soule and Melody and Bob Ruppel.
Both couples are retired andhave been married over 40 years.
They are the parents of Jamesand Kristen Ruppel, who have
been married over five years.
James and Kristen have Downsyndrome.
(00:46):
This episode won't have anymusic at the beginning or end
because of its length and theunusual beginning.
Before I start an interview, Ialways press record to get
casual chit-chat that may becomerelevant.
After this introduction, youwill hear a casual conversation
where the Ruples were discussingtheir former careers.
(01:06):
Bob had just finished tellingme his story and then he segued
to Melody.
Here is her story.
Speaker 3 (01:20):
And Melody had a thriving career until Krista
back to work and managing somegovernment contracts that
addressed actually fullinclusion for special needs
children in a regular classroom.
So although I did the financialpart of it, it was a very
rewarding job.
Speaker 1 (01:42):
That is great, See, I'm glad I asked that question.
So the government.
Okay, if you could tell me justa little bit more about that.
Speaker 3 (01:52):
Have you heard of the company WestEd?
I have not.
They're pretty well known ineducation throughout all the
states, all the states.
But they manage grants thataddress needs of kids from birth
(02:12):
through college.
And my boss believed in fullinclusion for our children and
really spent her career workingtowards that.
So they trained teachers how towork with kids with special
(02:34):
needs, but not just that, thewhole emotional, behavioral
element, and so it has gone intokids 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 workwith those kids, giving them
(02:59):
more confidence in theirteaching skills, and it's a
great program.
Speaker 1 (03:04):
And it's still around .
Speaker 3 (03:06):
Oh yeah, oh yeah.
If you look up WestEd you'llget all kinds of information.
Speaker 1 (03:23):
Okay, well, that's great.
Well, you know, when I get tothe part where I'm asking about
when they're little in theirschool years, you can certainly
mention what you just said,because I'm sure that helped you
making.
Speaker 3 (03:30):
Well, I didn't do that till after I went back to
work.
I took a break in betweenhaving three little kids and a
teenager at home three littlekids and a teenager at home.
(03:51):
And so when I went back to work, I went to work for this
company and but I met my boss atthe bus stop and after, when
Kristen was riding the bus, andfrom there, you know, she had me
talk at her junior collegeclasses and and she always
offered me a job, like everyyear for five years, and then
(04:14):
one year when I had one too manyexpenses, I said yes.
Speaker 1 (04:18):
So how old was Kristen when you started working
for them?
Um, I think she was about 14.
How old was Kristen when youstarted working for them?
Just estimated, I think she wasabout 14.
Okay, so when she was little,when she was like eight or nine,
you met this lady at the busstop.
Yeah, you need to work thatstory into what we talk about.
Okay, that's great because itdoes show about connections and
(04:44):
how and the knowledge and theknowledge that we have to
accumulate as parents to haveour kids included, how that's
valuable and she knew that andshe tapped into that, so you
definitely need to mention that.
Speaker 2 (04:59):
And it's generational , because now our oldest
daughter, nicole, is working forthat company too along with us.
Speaker 3 (05:05):
That's great, and she's a teacher as well, and
she's a teacher, so she'sactually a trainer.
Speaker 1 (05:09):
That's great.
And now Episode 17 officiallybegins.
Hello everybody, I am very,very happy to be able to
introduce you to two wonderfulset of parents they each have a
young adult with Down syndromeand who are married to each
(05:32):
other, and they make that workand they're going to share with
us some of the secrets of theirjourney and how this has all
played out.
So I want to introduce you toJim and June Zoll, melody and
Bob Ruppel.
So hello everybody.
(05:52):
Thank you for being with ustoday.
You're welcome.
So I want to start out withtalking about the journeys of
your beautiful, beautiful youngadults.
I'm so grateful that you'rewilling to share their journeys
with us.
If you could talk about theirbirth story, it doesn't matter
(06:16):
to me which one of you startsfirst.
Whoever wants.
Speaker 4 (06:21):
Well, I'll go ahead.
James, when James was born, wedidn't have any idea that he had
Down syndrome before he wasborn.
But immediately when he wasdelivered, the doctor suspected,
(06:43):
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 withother moms that were recovering
and the doctor said, oh no,let's put her in this private
room.
And the minute they did that Ikind of had a feeling that
(07:06):
something wasn't quite right.
And, sure enough, the doctorcame in immediately and told us
that his suspicion was thatJames had Down syndrome.
We have an older daughter, 10years older than James.
We tried for 10 years to have ababy and lost three.
(07:26):
James's birth was my final try.
So when James was delivered, Iwas thrilled to have a baby.
I didn't care about any of thenews that he was suspected he
had Down syndrome.
(07:47):
I was elated At that moment.
There wasn't anything thatcould have made me feel any
different.
So the people around me were mymother, my sisters, everyone
else took it much harder than meAgain, because I think we had
tried so hard to just have ababy that I was thrilled.
(08:11):
So James's health at birth wasreally quite good.
He had jaundice, he haddysplasia.
His hips Stayed in the hospitalfor a few days because of
jaundice, but his heart was good.
(08:32):
Those were really the only twohealth issues at his birth.
I remember the week that hestayed at the hospital five days
(08:54):
.
They wanted to give him abottle.
He wasn't sucking from mybreast and I had read to not do
that because once he startedsucking from a bottle it was so
much easier.
So I remember going to thehospital every three hours to
try to get him to nurse for afew days and ultimately what I
did was get a wash rag and icecold water and have him at my
(09:18):
breast and touch the wash rag tohis face.
And it startled him enough togo and he would suck.
So I went out, I told thenurses no bottles and uh, james
actually breastfed for the firstyear and uh went right to a cup
(09:55):
.
So his birth was good, hishealth was good.
Yeah, that was about it for hisbirth story.
Speaker 1 (09:58):
Came home and we started with all the stuff that
you do.
Before I get into all thatstuff that you do, I want to ask
Jim, sometimes it's differentfor the father and the mother
how that birth story starts, sohow was that for you when this
happened?
Speaker 5 (10:29):
very interesting to to have somebody come out almost
immediately, a doctor come outand tell you you know this
diagnosis of your baby and, uh,like june said, we were, we were
just so thrilled to finallyhave had had a little baby.
That, um, that reallyprioritized the situation more
than anything else.
Um, whatever the facts were,you know we were gonna, we would
(10:56):
deal with whatever we had todeal with and you know wasn't
going to get us down and that'spretty much the way we have
lived James' entire life.
He's more than anything, he wasa blessing.
So OK we were very happy to havehim and still are.
Speaker 1 (11:24):
And he is how old now .
Speaker 5 (11:26):
James was.
He'll be thirty nine in October.
Speaker 1 (11:31):
OK, we will get into the.
The other stuff after they'reborn, after we hear the RuPaul's
story.
The other stuff after they'reborn, after we hear the Rupel
story.
Speaker 3 (11:44):
So Melody and Bob, so Kristen was a quick birth I
seem to have my kids pretty fastand so you know, the doctor
barely made it into the room.
He literally didn't have timeto put his jacket on, or he had
(12:07):
his shirt and his tie and he ranin and she was just delivered.
The nurses thought they weregoing to have to deliver her and
so no one said anything rightaway.
And you know, we met her andthen they took her in to get her
(12:27):
cleaned up and we had been atthe hospital about three hours
and Bob went home to take ashower, home to take a shower,
and it was really the nursesthat suspected it and contacted
(12:47):
the doctor at the, and it was apediatrician that was on call.
And so he came in and told meand and I can't say my reaction
was as good as June's.
You know, I mean I was pretty,you know I was 32.
(13:07):
I never, you know, you worryabout, oh, my kid could be blind
or deaf, but I'm not 35.
So you know we're prettyshocked, and so I had to call
Bob at home to tell him, andthen he came back from the
hospital, but she was veryhealthy.
(13:29):
She didn't have any healthproblems.
She had a good APGAR score.
She breastfed In fact she wasvery stubborn about that and
would never take a bottle.
But I really think for me ittook a full year to adjust to
(13:53):
the idea and you know that youjust are going on a different
journey, a different picturethan you had for that child.
And my daughter, nicole, was 12then and one day she says to me
Mom, you think you're the onlyperson that ever had a baby with
(14:16):
Down syndrome.
You basically get it togetherhere, and so I think part of the
struggle was that I already hadNicole when we got married and
that for Bob not to have thatbirth experience the exciting
(14:38):
birth experience was difficultfor me.
Bob, on the other hand,adjusted much more quickly.
Speaker 1 (14:45):
Bob you want to tell us how this was for you.
Speaker 2 (14:48):
Sure, so well.
It's a few stories I probablyshouldn't say on the camera, but
I was in the room when Kristenwas born and, as Melody said,
the nurses were pretty franticthat they thought they were
going to have to deliver it.
And it was absolutely as Melodydescribed.
He came running in ripping offhis tie and, boom, caught
(15:10):
Kristen just in time coming out.
But for me, first of all, I wasjust ecstatic.
Of course this was my first andI didn't know anything about
babies and I didn't, you know, Iwas just a dumb guy that you
know, got married and was goingto find himself a father, to be
a father.
But when Kristen was born, Iimmediately sensed something
(15:34):
wasn't right.
But having no experience aboutanything, I had no idea what it
might be and I thought what do Iknow?
I don't, I've never seen anewborn baby, you know,
immediately after birth before.
So I didn't really give it muchthought at all, I mean, it just
looped on.
But I did remember, I rememberhaving that sense that she
(15:56):
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
(16:16):
really quick too and I justsaid, you know, okay, we don't
have the daughter we thought wewere going to have, but we have
this daughter and, uh, and westarted that journey together
and it's been incrediblydifficult and incredibly
rewarding.
And, um, here we are.
Speaker 1 (16:38):
More rewarding than words can ever say right, oh,
yeah, right, yeah, and I'm surethat both james and kristin were
beautiful babies.
Yeah, I'm sure, yeah, you knowthose years.
I always, when I talk to ayoung mom, I'm like don't, don't
, don't worry so much, justenjoy this time right now, just
(16:59):
enjoy it.
Yeah, right now, just enjoy ityeah.
I wished I'd enjoyed it a littlebit 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 earlyyears, when they're toddlers and
(17:19):
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 preschoolIf they went to preschool, that
kind of stuff.
Speaker 3 (17:34):
Yeah, well, kristen, really by three months, maybe
even a little bit earlier.
We had, you know, we hadcontacted regional center and we
had like a physical therapistcoming to our house and, you
know, giving me exercises andthings to help return and get
(17:58):
stronger and all that.
I feel like maybe about a yearshe started at the ARC in a
preschool program or like a babyprogram really with other kids
with disabilities, and reallysome of those people are still
(18:22):
my friends today.
I mean, the girls all grew uptogether and I still see those
parents all the time and youknow.
So she went there at the arctill she was about two and a
half years old, you know, andshe could by then.
(18:49):
She didn't walk until she wastwo, but she probably could have
.
This is Kristen, because whenshe decided to walk she got up
and walked into the next room.
Kristen doesn't like to doanything until she's sure she
can be perfect at it.
Anything until she's sure shecan be perfect at it.
(19:11):
And you know.
So she learned to play withkids.
She, you know, could recognizeher name.
She could recognize all thenames of all the kids in the
classroom.
She has a really good memory.
And then, when she was two anda half she was ready to
(19:35):
transition out of that program.
And so they send psychologiststo test your kids, which is just
such an arbitrary system ofsomeone walking into a room that
doesn't know your child andexpect your child to perform.
(19:57):
And so when Kristen, when thepsychologist, got to an IQ of 70
, she quit testing her.
Now I'm not saying that Kristenhas a normal IQ, but as a baby
she was really a pretty togetherlittle kid.
(20:17):
And so the director came to meand she said she just quit
testing her because she hadn'thad someone test that high.
You've got to make her test heragain.
So they came back in and theygave her the test of what they
would give deaf children and shetested in a normal range.
(20:42):
So regional center at thatpoint had absolutely no program
for her.
So they actually paid for herto go to a regular preschool
three days a week.
Wow, now, once she was donewith that, they did have better
programs to offer, but sheactually transitioned into a
regular preschool that was happyto take her and she was there
(21:04):
till she was five years old.
Speaker 1 (21:08):
Now, did you know, before this happened, that you
were going to want to go on aninclusive journey?
Did you know that?
Speaker 3 (21:17):
at that time?
Oh no, no, you didn't know.
I mean, our doctor told us thatKrista might not walk or talk.
Speaker 2 (21:23):
We'd have to feed her .
Speaker 3 (21:24):
You know.
So we had no idea what toexpect.
So we had no idea what toexpect.
The full inclusion journeycomes a little farther down the
road, once she got into publicschool.
Speaker 1 (21:40):
But really it started then?
Well, yes, Because she went toa regular preschool.
Speaker 3 (21:47):
Yeah.
Speaker 1 (21:51):
So I see what you're saying.
Your mindset started furtherdown, but you were already led
to it when it came to preschool,which is great, Because in 2023
, which is when we're doing thisinterview there are thousands
and thousands and thousands ofparents fighting to have their
child included in preschool tothis day.
Speaker 3 (22:10):
To this day To this day, to this day yeah.
Speaker 1 (22:12):
To this day Now, my daughter was included, but you
know we're exceptions, we're allexceptions, so I think it's
important to stay.
And how old is Kristen rightnow?
Speaker 3 (22:23):
She's 38.
Speaker 1 (22:24):
Okay, so we have a 38 and a 39-year-old young adult.
Well, I don't know, when do westop saying young adult At 40?
I don't know, I don't know.
We have a 38 or a 39-year-oldadult young adult who were
included.
Why can't we do that in 2023?
(22:45):
You know this is crazy.
So all right, so that'sinteresting.
But before I I go back to juneand jim, uh, melody and and bob
you told me that she walked ittoo.
Were her other milestonespretty similar to what her
milestone should have been when?
(23:07):
she was a baby and developingWell.
Speaker 3 (23:09):
I'm sure she was a little late on everything, but
Kristen really has a really goodmemory and so, like that served
her well.
She like, in that art class shehad memorized all the kids'
name tags that was our way ofteaching names and she would
actually pick them up and takethem to all the kids.
(23:29):
Name tags that was our way ofteaching names, and she would
actually pick them up and takethem to all the kids and the
teachers were like, oh, you know, she learned to sign before she
spoke, and by this time I waspregnant with Lisa too, and so
(23:53):
you know, life was busy.
But you know, she, she was she.
I wouldn't say she was right ontarget, but she was still.
She was doing well she waspretty close.
Speaker 1 (24:07):
Yeah, yeah, and, and, and, what, what?
How old was she when shestarted to speak, do you think?
Speaker 3 (24:15):
Maybe 18 months Okay.
Speaker 2 (24:21):
But we learned pretty early from what the doctor told
us was likely to happen.
The doctor told us was likelyto happen, which was not at all
what happened, and from thosetesting experiences to listen to
(24:42):
the professionals and then justforget about what they said.
And our attitude was Kristenwill do what Kristen is going to
do and we're not setting anyboundaries for what she can
achieve.
She will set her own boundariesand that every kid is different
.
Yeah, whatever she was going todo, she was going to do.
Speaker 1 (24:59):
And you know, I've heard many parents of of adults
say exactly what you just said.
You cannot let what theprofessionals, who still seem to
be outdated in many ways, inmany instances, dictate your
expectations.
The saying that my daughter andI have is no one ever rose to
low expectations.
So you would think the medicalprofessionals would know that,
(25:23):
but they don't.
So okay, on to June and Jim.
Let's hear about James's earlyyears.
Speaker 5 (25:35):
Go ahead.
Speaker 4 (25:35):
I think they were very similar to Kristen somewhat
in that James started with theregional center For him.
It was called the Early Infantstem program in san diego.
I actually took him to a littleclass there with other babies
early on um the uh, and so weparticipated in the programs at
(26:04):
the art and the same programs Ithink that Melody might have
been in.
I don't know how we missed eachother, but we did a preschool
program.
It was not inclusive, it was apreschool for all disabled
preschoolers.
He participated in that fromabout three to five years of age
(26:39):
.
He started getting transportedby the school district, one
thing that I did my firstinteraction with the school
district.
They wanted to pick James up ina little school bus and take
him to his preschool class.
(27:00):
But the bus had no seatbelts onthe bus and I remember my first
time contacting the special eddirector going what are you
doing?
I'm not going to put my childon a bus with no seatbelts.
So they did ultimately getseatbelts on the buses for kids
(27:21):
in our school district.
But yeah, it was a greatpreschool experience for James,
but not inclusive at all.
So, knowing what I know now, Iwished that at that early age he
would have had that experienceof inclusion with regular peers.
(27:45):
I think you can only learn.
You know those correct socialbehaviors being around other
kids with regular socialbehaviors, you in a book or
whatever, but that's what.
Um, I know that now and but um,let's see.
Speaker 1 (28:11):
I like your quote that you can't be taught that in
a book, because that's true.
You know, I always say that thebenefits of inclusion in school
are um and now the right wordis escaping me but they are
subliminal really.
I mean, and there's so manythat you can't articulate that
(28:33):
even come up later in life, andnot just for my daughter, but
many.
I think there's a quieter senseof confidence.
It's just a natural, quietersense of confidence, just
because of her environment, justbecause of that.
There's so many things, but Ilike that.
(28:53):
You your quote.
You can't teach that in a book.
Speaker 4 (28:57):
I used that quote at so many IEP meetings because it
was so important to me for himto learn all of that, to be able
to live in life.
You can't be segregated fromthat and try to be taught that
(29:18):
you have to live it.
So I used that a lot.
Speaker 1 (29:23):
That's great.
So did he.
Do you remember when he talkedand when he walked?
Speaker 4 (29:29):
He walked at two years of age, the same as
Kristen.
He never learned to crawl.
Interestingly enough, he was aroller, 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 andfor all he may be stubborn, I
(29:50):
don't know, maybe rolling waseasier.
Speaker 5 (29:52):
The dysplasia the dysplasia.
The dysplasia.
Speaker 4 (29:55):
Yeah, so he walked it too and James has a stutter
where he gets stuck on words.
It's over the years has becomeso much better.
A lot of speech therapy, thingslike that but his talking has
(30:17):
always in his early years wereone and two word utterances.
It wasn't sentence type.
So talking we're really one andtwo words for you know,
probably tell elementary schoolfor sure.
Speaker 1 (30:38):
And you think he started at age one or around
that.
Yeah, yeah, you know Okay.
So yeah, and the reason I askthese questions is younger
parents.
You know they they can't getout of the habit of those
milestones and targeting.
But I remember reading a bookbecause we were fortunate to
know ahead of time, so we hadthat time before my daughter was
(31:01):
born to do the research and Iremember reading one book that
said your baby is still abeautiful baby and it really
doesn't matter when theirmilestones are.
They will still have thosemilestones and I remember
thinking that was just sowonderful.
So that's why I hope the youngparents will enjoy this time, no
matter when their milestoneshappen yeah, so that's great.
(31:24):
Milestones happen yeah, so sothat's that's great.
Thank you for listening toepisode 17 of Born Fabulous
podcast, third season.
I hope you enjoyed it and wantto hear more short video clips
from most episodes are availableon our YouTube channel and on
bornfabulouspodcastcom.
In episode 18, you will hearthe Zoles and and the Ruppels
(31:44):
discuss James and Kristen'sschool years, advocating for
full inclusion, iep meetings andmore, mixed with some good
examples and stories.
Please follow and like us onFacebook, instagram and Twitter.
If you enjoyed this episode.
I'd be honored if you wouldleave a review wherever you
heard this podcast.
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