I've been at this Down syndrome sibling thing for oh, let's just say 29 plus years...But through the magic of social media, I've "InstaFriended" another incredible family who have even more experience than I do.
This is James (AKA "Jimbo'). He is a 53 year-old man with Down syndrome and he is an Instagram sensation! More than 8,000 followers are captivated by his smile and his message of positivity. He is a daily reminder that we are as happy as we make up our minds to be!
That's why I felt like a journalist who scored the "exclusive" when Jimbo's incredible sisters, Pam, Julia, and Patti agreed to answer questions posed by our followers to be featured on Confessions of the Chromosomally Enhanced. Without further ado, I am so honored to share their honest and inspiring story with you:
Background: James (aka Jimbo) is a 53 year old man with Down
syndrome, who happens to be non-verbal. His parents had 11 children….he
is the 9th in birth order. His sisters answering questions here are Julie, the
7th in birth order. She is married to Randy, with 4 adult children and 7
grandkids. Patti, 10th in line, is married to Sam, with 3 adult children. And,
Pammie, 11th in line, is married to Marc, with 2 adult children. Jimbo lived in
the home with his parents and siblings. His mom was a stay at home mom and his
dad brought home the bacon!! :) His mother passed away in 1998 and he remained
in his home with his dad until 2005, shortly before his dad passed away.
What are Jimbo’s
living arrangements? How do the siblings work out the care of Jimbo in regards
to shared responsibility and time spent together? How do they make sure he has
the company he needs while sharing the load between siblings who have
jobs/kids/etc?
He lives between Julie’s house and Pam’s house.
Alternating weeks, Monday to Monday.
Julie is a stay at home mom/grandma
who babysits a few of her grands and volunteers in the community. Pam is a mom
with a part-time job that allows her to work around Jimbo’s schedule. Our adult children help us with Jimbo when we
put out the call. Patti is a mom with a full-time job. She works it out to help
us with Jimbo on the weekends when we need her to man-sit. (Hence, this is where
the term, “Jimbo is the man” came from.)
It all just works out!!
How was Jim’s
transition from his parents’ home
to siblings? What were the biggest adjustments?
Surprisingly, it was a smooth
transition. The alternating just happened to work itself out over the course of
the first 6 months. We just figured out a way to make it work best for all of
us. The biggest transformation that was noted by all, was the change in his
personality. He was always a happy, loving guy but he was a 44 year old man living
with an 88 year old man. He had aged beyond his years through no fault of our
Dad’s. After a very short time, living with his siblings and
our kids, he sprang to life. He suddenly was more active, on the move, being in
the community more, meeting new people so he started acting younger and
younger!! It’s been a very positive for him and all of us!!
Describe what a typical day is like for Jimbo. What are his
routines?
Weekday….Rise and shine,
breakfast, get dressed, make the bed, off to workshop at 9:00. Workshop until
2:30…running around town with whichever sister, niece or
nephew picks him up or home to watch afternoon TV and whatever chores those
sisters have cooked up. Dinner, bath, a little more TV….bedtime.
Weekends….Rise and shine, cooked breakfast (eggs are his
favorite), get dressed, make the bed, off to whatever adventure those sisters
or brothers in law have cooked up!! Usually some TV in the afternoon, dinner,
bath, a little more TV….bedtime.
It’s a nice, simple
life….keep calm, stop and smell the roses, etc., etc.
What makes Jimbo laugh out loud? What cracks him up??
There is so much to say here. Jimbo
is so FULL of joy and laughter. Thoughts in his head that only he can know
crack him up!! He laughs at sitcoms with slapstick comedy, TV shows with
explosions. He thinks it’s hilarious to play a game
of throwing balled up socks at us and we throw them back!! Flicking us with a
towel produces uproarious laughter. Piñatas are a hit!!
(Pun intended.)
Does Jimbo have any “hoarding” or “hiding” tendencies?
(Asked by someone with this experience with a relative with Ds.)
He actually has a paper obsession.
Small scraps of paper, business cards, wallet size photos, receipts, etc.
Anything that will fit or can be folded small enough to fit nicely in his
wallets. He has two wallets that get VERY large from all of the stuff stuffed
into them. Sometimes his pockets are so full that they drag his pants down!! :)
When stuff starts falling out, he saves it in the drawer of his nightstand. :)
Have you looked into employment services or mobile crew options
for Jimbo to work? If so, what type of transportation have you arranged?
Personal or is there a public system for people with disabilities?
Jimbo attends a day program Monday
thru Friday that is a vocational/occupational program. The workshop has a
program that provides the clients “warehouse” work experience and also has occupational classes and
social events. Jimbo’s work experience includes
packaging of nuts/bolts, stuffing envelopes, assembling gift bags, etc.
There is transportation available
thru social services but we choose to use personal transportation because it
works better into our schedules.
What do Jimbo and his siblings like to do together for fun?
Jimbo is included in all of our
family activities as much as possible. We have a lot of get togethers, perhaps
the nature of a large clan!! Just socializing, playing a game called Left Right
Center is a favorite because it can include even the little kids. He loves to
dance so having music is always a plus!! We’ve recently gone
camping. Just the same stuff that every other family likes to do!!
How is Jimbo connected to his community?
The previous 2 questions pretty much
answer this. Through the activities at his workshop he socializes with peers
and through family connections he socializes with the typically developing
community.
Has Jimbo fostered authentic friendships with both typically
developing peers and peers with disabilities? How did the peer connection
change after the school years?
At this time, Jimbo’s friendships are mostly focused on his family and
typically developing peers through family contacts. He has friendships with
peers with disabilities through his workshop and the social activities that
they have.
How do each of you & Jimbo handle ignorance about Ds?
Especially when it comes to people who aren’t thoughtful with
their words.
We cannot be concerned in our day to
day about the ignorance of others. Jimbo doesn’t care because he
doesn’t fully understand so therefore we choose to ignore
ignorance for the most part. We deal more with stares than with comments so we
choose to just move on!!
I’m curious
to know how you deal with the totally flippant and offhand use of the “R word” (like when referring to shoes or homework assignment) and I’m curious to know how your Ds
siblings deal with it too.
First, let me state that you must
remember that we are all over 50 years of age. (GASP!!) When we were growing
up, the “R word” was used to describe our
brother’s “condition.” We didn’t know any other way to
describe Jimbo!! (I know this is very distressing to some who read this, but,
we are trying our best to be honest here.) Sometime in our youth, the term Down
syndrome was introduced to us and that’s what we were
told was the proper term to describe Jimbo.
So….having said all
of that….we were guilty of using the “R word” ourselves for years!! And
then the campaign to end the word began and we jumped onboard. Now if I hear
the “R word”, especially in the presence
of Jimbo, I just look at the person using it and say, “Really!? Come on now…let’s just not!!”
Did you ever encounter others not being accepting of Jimbo, like
your friends growing up? If so, how did you handle that?
Julie: Trying to recall if this was
ever even an issue. Perhaps I chose friends wisely because I cannot recall
having this be a problem for me.
Patti: I was super protective and
defensive of Jimbo. If anyone gave him a look, a whisper, a stare, I was ready
to literally jump into action. Punching may have been involved!!
Pammie: Ditto what Patti said because
we were always together!! We have since outgrown this behavior!! For the most
part our friends were fabulous!!
How often did your parents spend time with you separately
(considering there are 11 siblings)? Just wondering how much alone time each
needed with their parents.
Once again, let’s go to our age and the fact that we grew up in the 60’s-70’s. There wasn’t a huge emphasis on this type of thing back in the day.
We don’t recall ever feeling deprived of attention. We think our
parents were just doing the best that they could and focusing on working,
raising, housing and feeding that many kids. We think we learned to love and
care for each other by following their example. The “it’s not all about you” lesson. Jimbo was the center of everyone’s attention.
How did your parents explain to you that Jim has Down syndrome?
Was it a big family discussion that took place or did that just evolve over
time?
Julie: I was 3 1/2 when Jimbo was
born. I vaguely recall his homecoming from the hospital and only recall
realizing he wasn’t typical because he wasn't
attending school with the rest of us. Back then, the state did not have
inclusion in the public schools. He went to a special school for individuals
with disabilities. Also, I remember asking our Mom questions as they arose and
she would answer. It was not a big sit down discussion for me. I just wanted
him to talk!!
Patti: I’m 12 months and 16 days younger than Jimbo. I don’t recall any huge revelation about finding out Jimbo has
Ds except that he has two webbed fingers and I was most curious about that.
Pammie: I’m 2 years and 4 months younger than him. I don’t recall any discussion…I just knew we
needed to watch over him. It’s just all we knew…it was just natural.
Do you remember having a talk with your own kids explaining Uncle
Jimbo’s Down syndrome?
What was it like? Or did you just answer questions as they arose? Did your kids
even ask questions or did they just accept him because he was always there?
Julie: For me, it was a very natural
discussion as questions came up about Jimbo. He has always been a part of the
lives of my kids and now my grandkids so there have been lots of questions over
the years. Just leaving the door open for frank and open discussion has been
the best for us.
Patti and Pammie: Ditto…we all agree!!
How has the experience with a sibling with Down syndrome changed
your life? Like if you could point to one or two things that you could say “I would not be the person I am
today in this area if I did not have him in my life…what would it be?”
Julie: This is a tough one for me….because I get a bit emotional over it. I don’t really know who I would be without Jimbo in my life. I
actually have a hard time visualizing that. I’m a pretty driven
person with an inability to sit still. I’m always in motion….but perhaps less so because of him. He has a calming
effect on me, makes me slow things down a bit, he’s comforting when
I’m sad or anxious. So who knows what I’d be like without him…hard to say!!
Patti: None of us know who we would
be without him. Certainly lesser….period!! I have always
believed that Jimbo is a glimpse into Heaven.
Pammie: This is hard. You just don’t think about this until you’re asked. Our family would not have been so close. I know
I wouldn’t be as patient, wouldn’t have as much
empathy, wouldn’t be as tolerant as I am.
Does Jimbo find happiness and fulfillment in his life path? And
what do you tell people who find it difficult to truly understand this
fulfillment because it rides against the standards of our achievement-driven
society?
We think he’s happy. Fulfilled? Isn’t being happy
fulfilling? He is a part of a family that loves and cares for him deeply. Isn’t that fulfilling? He is doing his job, showing us how to
live, love, and be better people.
Julie: I think being a part of the “youngers” in our family sealed the
deal for me and Jimbo. I have no real memory of life without him. I was the
original “Mother Hen” to my 4 siblings that are
younger than me. We used to pull Jimbo around our neighborhood in a little red
wagon because he couldn’t keep up….how could we not have a special bond? That bond suffered
a bit in my teenage years because I was “too busy” (sad to say on my part) but we have just grown closer as
we grow old together.
Patti and Pammie: We didn’t have an opportunity to NOT be bonded. We were with him
all the time. It was fine with us….we don’t remember suffering for it. There was no burden, no
suffering, it was just part of life. As we got older, got married and had
families, we weren’t with Jimbo on a daily
basis. But now, the bond is stronger than ever.
That was better than I even imagined it would be when I first asked these lovely ladies to guest blog post. Thank you, Pammie, Julie, and Patti, for this exclusive glimpse into your life with Jimbo. It was honest, humorous, and heartwarming. I only wish we lived closer so we could all hang out.
And thank you, Jimbo, for being you, and for enriching the world with your smile!
To follow @jimbo_is_the_man on Instagram, click HERE!
This was such a great post! All their answers were really heartwarming. I've followed your blog and instagram for a long time and never commented. Don't know why as all your pictures and comments crack me up. Josie is a star and all your kids are so lucky to have each other. Related to this post and wanted to comment because it made me think of a girl across my street who I used to play with when I was about 6, almost 20 years ago now. She had Down Syndrome yet it was never questioned or mentioned, she was just one of the kids who we all used to play with, even if sometimes she couldn't keep up with us or do certain things. We would just wait and help her out. Made me think that prejudice really is learned! Thank you for such a great blog.
ReplyDeleteSo grateful for this interview. I follow Jimbo on Instagram and my whole family loves to see his smile. Following Jimbo has also caused my older children, only 10 and 6, to wonder about what their baby brother's life will be like when he grows up. They want to take turns caring for him like Jimbo's sisters. Thank you for your insight, example, and sharing your sweet family with us.
ReplyDeleteThank you, so heart warming!
ReplyDeleteexcellent post! I would've loved to know more about how they communicate seeing he is non-verbal, but apparently there is well understood communication at this point in time. This is very heartwarming. I am 50, there was a family who had a sibling with Ds and they did not bring him home. I always felt sad for that child. He visited them occasionally but for the most part he was put in a "home". it is too bad that family didn't have mentors like this to see it was possible. THANKS again for a great post.
ReplyDeleteI LOVE this! Thank you so much for interview, and thank you sisters for your candid answers. I love following Jimbo on IG and it was nice to get a glimpse into his life :)
ReplyDeleteWhat a great post! Jimbo is quite the guy and his siblings sound awesome.
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