We'll let you in on a little secret

Guess who is coming to town today and staying all weekend...

 

She'll be fresh off a Special Olympics snowshoeing competition so hopefully she'll have a lot of fun stories to tell (not to mention medals - fingers crossed!)

 

Stay tuned!

YaYa and Papa experience Josie's Diner

Excitement filled the air last Thursday as we anticipated the arrival of Travis' parents, YaYa and Papa!  While Papa stopped by during a business trip to our area in December, we hadn't seen YaYa since Thanksgiving.  The girls were eager to show off their new skills and abilities for their grandparents.

YaYa was excited to give the girls the gifts she brought - new dress up clothes!  YaYa sure knows how to make little girls beam with delight.  Merryn was so enthused she put on the earrings, shoes, gloves, hat, and tiara immediately and pranced around like she was royalty.  Josie dazzled in a sparkly tiara and pink feather boa.  

 Somewhere there's a formerly hot pink chicken shivering in the cold - she's welcome to come retrieve her feathers from our family room floor.

 

Boy oh boy did our smiling sweeties have fun with that little costume party.  YaYa's knack for picking out gifts turned our gleeful girls into glamorous beauty pageant queens!  Move over Miss America, you've got competition!

 On Friday we relaxed at the house, spending quality time together as a family.

 Later that day, Dad and Papa left to go set up for the big Chili Cook Off!

This photo about sums it up - Josie wants a gentle hug goodbye while Merryn prefers to mark the departure with a wild round of wrestling Dad.

 

 Saturday was the big day: our 4th Annual Chili Cook Off.  It benefits a local organization that offers incredible programs for kids with special needs.  Our theme this year was "Josie's Diner":

 Several local restaurants competed so it was especially funny when our "customers" would ask us where "Josie's Diner" is located, as if we represented a real diner here in town.

 But who can blame them?  With the help of YaYa, Papa, and some really kind-hearted  and creative friends, we delivered a convincing diner experience complete with an elaborately decked out booth and Travis' award-winning chili!  Delicious!

 

Well, it was delicious...until we ran out...two hours before the event ended.  While Travis prepared the amount recommended by the guidelines, the event turned out to be so popular that many teams ran out.  This is where it gets funny.  Unwilling to disappoint our wonderful "customers" who had spent their hard-earned money to support our favorite local charity, a Plan B was immediately concocted.

Travis ran over to the concession stand and purchased several jumbo cans of whatever chili they had on hand.  As it was poured into the roaster, we realized our "back-up chili" looked about as appetizing as cat puke.  That's when Plan C was implemented.  Our innovative friend, Tom, ran out and bought some tomato sauce and proceeded to dump it into the back-up chili, hoping for a more authentic look.  Instead we turned the back-up chili into watered-down, PINK cat puke.  Yummy!  Needless to say, we didn't place in the competition this year but we sure had fun in the process.

 

Here are some more cute photos from our weekend with YaYa and Papa:

 Josie realized her ambition to be a jeweler...or perhaps a barber.

 Merryn appreciated Papa's willingness to shield her from the pounce of a hungry dog, who was desperately trying to steal her Cheerios.  While Papa empathized with Merryn's distress at the notion of sharing her cereal, the rest of us found this scenario extremely entertaining.

Merryn introduced YaYa to some of her favorite literature.

 Oh and this one is just for bragging purposes.  Go Josie, go!

All in all, it was a wonderful weekend!  Special thanks to Tom, Helena, Brian, and Amy - what an awesome chili cook-off team!  Much gratitude to YaYa, Mama Hop, and Grammie Deb for donating terrific items for the silent auction.  We'd like to send our heartfelt appreciation to everyone who came out to support us this year.   And much love goes out to YaYa and Papa who made the weekend even more fun and memorable!

 

Mama Hop Monday - Volume 4

Wow!  The blog hasn't been updated since last Monday.  We have a really good excuse - a major life change that has shaken things up around here (more on this later).  On top of that, we hosted YaYa and Papa over the weekend and participated in our 4th annual Chili Cook Off to benefit kids with special needs.  Stay tuned for a separate post on that.  But for now, it's time for the fourth edition of:

Question

From all your observations in the schools and life in general, what is one change parents of children with disabilities could make in order to help their child?

- Kelli

 

Answer

The best thing is to stay informed and "shop" for services for your child. Change them if need be.

 

Question

How did you handle the news of having a baby girl with Down Syndrome 35 years ago?
Is there anything you regret about Leanne’s education, the way you raised her or anything you wish you could’ve done different? And why?  Also, I would love to hear any funny stories from when you guys were younger and growing up!  Oh!! and her secret to always looking so fresh and beautiful!

- Carolina

 

Answer

I did not know what Down syndrome was 35 years ago, so tried to get informed ASAP. I joined a parent group. I was in graduate school and got my masters in sp ed.

I wish I could have been a stay at home mom until the girls began school.
 

There are many hilarious stories from the girls growing up. One of the favorites is when Elizabeth and the 3 little girls from down the street (all ranging from 4 to 8) were playing in the playhouse in the back yard. Apparently, they were giving Leanne a hard time. She did not get mad; she got even and locked them in from the outside with a padlock.
 

"Fresh and beautiful"?!  THANKS!!! The secret is to break the camera if they catch you looking haggard. Ha!

Question

I would love to know how she has prepared/arranged for Leanne's future financially. I'm sure having a sister that loves her so much helps with the peace of mind! We are looking into special needs trusts and just don't know anything about it! I would also like to know how she gets you back for all the abuse you dish out on this blog about her!
- Jenni

 

Answer

We set up a trust with an estate attorney to cover expenses that "entitlements" may not. Never too soon to start saving for that.

 

Oh Jenni!    Could hardly wait to answer this one regarding the blog abuse. Laughing right now...
 

Hmmm. I could spend all my retirement income on useless junk that Elizabeth will have to clean out of the house when I'm gone: used make-up, knick knacks, TV infomercial promotions... You have me thinking. : ) Elizabeth's love for Leanne means the world to me, so I cut her some slack. 

Question
How is it different in society having a child with Down syndrome now as opposed to when Leanne was born. Attitudes etc
- Mindy

Answer:
I think society still needs to change with some ignorance and attitudes, beginning with the medical community at birth. School inclusion has helped a lot, since young children are usually more accepting and influenced in compassionate ways. Who could not love Down syndrome kids with such beautiful hearts?!





Mama Hop Monday - Volume 3

Mama Hop and Josie at Josie & Merryn's baptism

 

Question

I've been wracking my brain trying to think of one really good question, but I don't have one. I think I'll benefit from anything she shares. :) I'm so curious about her experience parenting both of you - what that looked like ... I think I wonder a lot about the relationships my children will have with each other as they grow. You and Leanne are really close, and I wonder how your mom encouraged that.

- Deborah

 

Answer

Parenting Leanne and Elizabeth was great. The girls got along well and conspired a lot... Could never get upset because their giggles were too cute.

 

Question

OK, a few - how did Mama Hop handle being a teacher AND having her daughter in SPED? Was it at the same school? What's her best advice for the DS mama/SPED teacher/love my colleagues and my kid who starts next year?

Also, wondering about long-term stuff for Leanne (living arrangements, etc), how Mama Hop handled the initial news about Leanne's diagnosis, and how she is so awesome, because you and Leanne are both hilarious. Clearly, Mama Hop helped with that.

And a good wine recommendation?

And seriously, her skin looks wonderful, any secrets to share?

-Team Lando

 

Answer

I never taught in the schools that Leanne attended, but being a teacher myself helped me develop wonderful relationships with Leanne's teachers and with the parents of my students.  We have always been cut-ups. With an uninhibited Down syndrome child my motto is "keep the humor".

 

Elizabeth has never been expected to be responsible for Leanne, but she insists. She will eventually have custody of Leanne. This has been arranged through an estate lawyer.

 

Wine: Italian pinot grigio. Sam's Club has Mezzacarona.  It is good and reasonable.

 

Skin: I love the smell of Coast soap, so that is my favorite cleanser. Would horrify a dermatologist!

 

Question

Okay! Addy has this awful habit of saying "STOOOOP!" whenever anyone says anything to her, around her to others etc. It's extremely rude and nothing we have tried has made her "STOOOOP!" Any suggestions??? :)

-Cammie

 

Answer

Try ignoring it. Sounds like an attention getting behavior. Attend to the person she is saying "stooop" to. I can think of worse things she could say!

Maybe give her a talk and set up a reward system. Good luck. She will think of something else down the road anyway. Keep smiling.

 

Question

My husband and I have been seriously considering adoption...most likely of a child with Ds. So, I'm curious as to what the biggest challenge in caring for Leanne is now that she is an adult. Is she in any day programs? Any type of vocational training? Any daily routines? It just seems, to me, that there are so few options for adults with special needs. And I'm a little curious as to how much freedom Leanne has - can she stay home alone, go to the mall alone - or does she really need steady supervision? What is the balance for independence?

Also, I think Mama Hop is so gorgeous...maybe she should share some skin care tips!

-Kacole

 

Answer

Regarding the adult challenge we face: With the economy, keeping Leanne productively occupied and entertained is hard, since she has had jobs in the community that folded. She is currently in an Arc program where they have a dog biscuit business going. Leanne takes pride in coming home and reporting how many biscuits she made each day. Cute story: We were listening to Donna Summer on the radio one day and Leanne said, "I can't sing like that!" I told Leanne that Donna could probably not make dog biscuits either.

 

Leanne has daily routines and self-assigned chores:self-care which is totally independent, including self-cathing due to neurogenic bladder. She takes care of garbage detail, refilling paper towels and such, feeding the cats and on and on. I am lost and the place falls apart whenever she is gone!

 

I am over-protective and Leanne constantly reminds me, "Mom, I am independent". Yes, she can stay home alone and take care of things and herself. I would not trust others enough to let her go to the mall alone, but she goes into Walgreens and buys gum and such. Thus I am "Mom's Taxi" which can get taxing.

 

 

Many thanks to Mama Hop for willingly answering these questions.  If you have a question for Mama Hop, leave it here or email us at DualDownsDivas@gmail.com. 



Gross Motor Progress: The Hokey Pokey

Down syndrome is often characterized by developmental delays and Josie's most significant delay is in the gross motor category.  While she will take a few celebrated steps, walking is still not her main mode of transportation.  Even though we are confident she will be a full-fledged walker someday, the sloooooow pace of her progress is, admittedly, frustrating at times.

Josie's PT brought over a pair of Stabilizing Pressure Input Orthosis pants (AKA "Spanx") and Josie has been wearing them frequently.  They do seem to make her more confident in her movements.   Another major motivator, across the board, is music.  Josie lives for music!

This morning, sporting her SPIO pants, Josie gave a rousing demonstration of her gross motor "skills and abilities" (two big buzzwords for Leanne, hence, a long-standing inside joke here at CCE) in the form of the classic "Hokey Pokey":
Talk about proud!  Girlfriend did her thing!  She braced herself when necessary and when she fell down, she got back up! 

Strangely enough, she kept moving throughout the song almost as though she were on a bike knowing that if she stopped peddling, the bike would tip over.  Travis attributes it to the Law of Inertia - an object in motion tends to stay in motion.  I'm not sure Josie's gross motor delays can be explained by the laws of physics or just a healthy fear of falling combined with a deep-seated need to exert her 2 year-old autonomy by reminding us that she will walk/run/Hokey Pokey when she's good and ready and not a second sooner, thank you very much.  Either way, my heart bursts with pride (and laughter) and Josie's Hokey Pokey skills.  Go JoJo, go!

Another Whodunnit?

Yesterday, the playroom became a crime scene...again.  This time it wasn't a murder mystery but rather a disappearance: the case of the missing spectacles.  In the time it took to unload the dishwasher, a pair of bubblegum pink glasses vanished.

What we have here, ladies and gentleman, is a good, old-fashioned "Whodunnit". With no witnesses, no alibis, and no confessions, we must turn to the circumstantial evidence...again.

 

Perp #1: Josie "The Catfish" (aka "J-J-J Jo Jo and the Jets")

What are you talking about?  I AM wearing my glasses.

 

Don't let her calm and collected mannerism fool you.  She's a princess in pigtails who has had a love/hate relationship with her glasses for more than a month. 

 

Then there's...

 

Perp #2: Merryn "The Mimic"

She may only be 17 months-old but this frilly fraud has a rap sheet a mile long of identity theft attempts.  She has a penchant for accessories and a documented case of glasses envy.

 

Or perhaps in the spirit of the great criminal duos of our time...Bonnie & Clyde...Butch Cassidy and the Sundance Kid...Thelma & Louise (yeah, yeah - go with it) these two corrupt companions conspired with one goal: Make those doggone pink glasses swim with the fishes.

So which one of these sinister sisters snatched the specs?

An APB was issued and we put our best detective (Mom) on the case.  The crime scene was scoured over and over again but every lead turned up dry.  Just when investigators were about to call off the search, a small glimpse of pink appeared from the most unlikely spot and a crimson co-conspirator was caught red-handed.

An intense interrogation ensued but this accomplice ain't given up the goods.  No sir, his lips are sealed (unless you press his hand in which case he sings "Jingle Bells").  The hush money must have been hefty because this allegiant accessory is facing life in the pokey while the suspects remain at large, waiting to strike again.  It's only a matter of time...



Mama Hop Monday - Volume 2

*** Today's edition of "Mama Hop Monday" is not without controversy.  Let's start by realizing that Mama Hop has benevolently agreed to answer any and all questions and some of them are sensitive and personal.  However, because it is Mama Hop's viewpoint that is being sought, her answers will not be edited because that would be insincere.  It's the same reason Aunt Leanne's emails aren't edited for spelling and grammar.  Here at CCE, we value giving you an honest and authentic glimpse into our world. 

 

Question

What are your thoughts on the people-first language movement?

Answer

My thoughts on the "People First Language" movement is that it is another politically correct movement. I totally agree that people with Down syndrome deserve all the respect that any other person does. Knowing their kind, pure hearts, possibly more. At the same time, "It is hard to teach old dogs new tricks". So, forgive me if I say "Downsie" or something like that.

 

When Leanne was first born and her "renowned" pediatrician called her a "Mongoloid", I found that very offensive. Needless to say, he did not remain her doctor long at all. Now that was not only offensive to people with Down Syndrome, but also a slur to the Asian people. Looking back, that term has fortunately faded, but I now realize it was acceptable to people of the older generation. The Down syndrome term may change along the way too.

 

As I have always said, "A person could be an ax murderer, but they are okay with me if they treat Leanne well". I do not care if the words change as long as there is kindness and respect in the actions.

 

*** Elizabeth's thoughts on people-first language can be viewed here.

Question

I'd love to know how Mama Hop (as a teacher and as a parent) keeps her patience when working with a little one who is struggling to pick up a new task.

I'm also wondering how Mama Hop - considering her background - reacted when y'all announced your decision to start your family with a little one with an extra chromosome. I'm sure that's a great story.

And of course, I'm curious about whether Mama Hop has a favorite story of parenting young Leanne and Elizabeth that she can share and what her secrets are for developing great sibling relationships between siblings with and without extra chromosomes.

- Heather D

 

Answer

Patience was not always in my vocabulary. I recall frustrations trying to get Leanne to attend to math homework.  Down's individuals generally to better in reading than math.

 

It seemed natural that Elizabeth and Travis would adopt Josie. We are thrilled and just adore her.

 

There is no secret about the sibling relationship. Leanne was there first, so Elizabeth just went with the flow. We did most everything together and both girls are spoiled. Ha!

 

Question

yay! well, i guess i kind of just wanted to hear her story about raising Leanne. how she felt when she found out about her having Ds, her decisions in how she raised her, how she decided on having another child, etc... I'm surrounded by people my age with children the same age as Rachel but hardly anyone who's really been there/done that. would love to hear how she got through the early trying ages.

- I Just Love You

 

Answer

Oh, I could write a book on this! I did the best I could with what resources I had. Connecting with other parents was most helpful.

 

Question

I'm happy to hear anything she has to say, but I have always loved pysanky eggs, so if she has some hints about good places to learn techniques, I'm all ears!

- Katrynka

 

Answer

Katrynka--love your name. Is sounds Ukrainian. Is it? Elizabeth was likely trying to make me sound interesting when mentioning pysanky eggs. I ordered a kit with instructions, tools and dyes. The process is time consuming, but fun. I'm sure kits could be found on line now. They are sometimes called "Ukrainian Eggs".

 

Question

I also want to know mama hop's first reaction to finding out she was getting a granddaughter with Down syndrome!

Also, Mama Hop, if you had to give 3 quick tips to a parent of a person with Down syndrome, what would they be?

-goldenleaves

 

Answer

My first reaction regarding getting a granddaughter with Down Syndrome was a surprise, as with any birth announcement. After that, it seemed very natural. I am very happy about the decision and Josie.

3 quick tips:

1. Try to be more determined (nicer word than stubborn) than your child.

2. Create structure, while maintaining flexibility as needed.

3. Keep a sense of humor and humility.

***Special thanks to Mama Hop for answering everyone's questions - even the tough ones!