Dancing with the stars (of CCE)

Mama Hop and Aunt Leanne came to help out while Travis was on a brief business trip (domestic this time - a refreshing change).  I had to take Josie on a little road trip to the children's hospital to get her glasses adjusted and to get a new Mic-Key button (hopefully the last one but I don't want to jinx it so we'll talk about that when it actually happens!) and Mama Hop and Aunt Leanne stayed behind with Merryn.

When we returned that evening, we had an impromptu dance/karaoke party.  Leanne mentioned this in her blog post.  Initially she was hesitant to blog about it because she said she didn't know how to spell "karaoke".  I said "That's ok.  No one does!"

We had a request for some video footage so here it is!  Aunt Leanne takes on "Any Man of Mine," Shania Twain's popular feminist anthem about not putting up with any nonsense from a man!  Leanne outta know about that - she broke up with her last boyfriend because he flexed his muscles for another girl at the Special Olympics.  It was scandalous - let me tell you!  He got kicked to the curb pronto!

Dad never comes home from a trip empty-handed.  He presented Josie with a sock monkey he'd picked up in the airport.  She gave it the once-over and looked up at her dad and declared, "It's broken!"

That's right, JoJo.  He doens't sing or dance.  He's just a plain, old, inanimate stuffed animal.  Faulty indeed.

 

TGIF!  Have a great weekend!

 

Aunt Leanne blogs

hi everbody

aunt leanne

blog

came sister husie

 (I believe she meant to say "house," not "hussie".  I hope I'm not mistaken.)

help

with babys

bnnna  stawbrrey

splt

catfish

ketchup

 that me i good

looking

blue sweats

smile

 sister give me presnts

zebra

zoo

outfit

 mom doint like it

 i like it

feel good

look

cool

 i sing karoke

high musual

fry rice

nickname  sortand boood

mary

plickes

home go stnks

i want to stay

here forever

am tried

gom bed

love leanne

 chesebger

nckname

for me

Translation: She had a bloody Mary (sans vodka) with pickles.  Going home stinks.  She wants to stay here forever. She is tired and going to bed.

Best Christmas gift EVER

Travis always has to have a project to work on.  Not only does he enjoy his projects, he also has a major aversion to paying someone to do something he can figure out how to do himself for a fraction of the price.  Given the fact that he's dress-shirt-and-slacks-wearing-lap-top-toting-cubicle-sitting-technology guy with no formal training in construction, carpentry, upholstery, or the like, the things he's been able to create have been pretty incredible!  When we decided to adopt a baby, he and his dad (Hi Papa!) rolled up their sleeves and finished our basement to make more space for our growing family.  And we've discussed other projects he's taken on including building a baby gate and adapting our treadmill so that Josie can do treadmill therapy at home.

 

When we decided to turn our former office into a hot-air-balloon-themed playroom, he made adorable hot air balloons to hang on the wall.  It was at this point that he became known as "Crafty Dad".  Recently he's taken on a few more projects including upholstering a new headboard for our bed and building a riser for my desk....

 

...but his coolest project to date was a Christmas gift for the girls:

 

Yes, we now have our very own Chuck-E-Cheese in our basement!  It's every little kid's dream come true!

 



In addition to the sheer fun factor, the ball pit provides an opportunity to hone all sorts of gross motor skills including climbing, sliding, and swimming in thousands of brightly colored balls!

 



Merryn is a big fan!  Her sense of adventure and athleticism have always exceeded what would be prudent for a baby of her age and size.  When she was barely a year old, I have video footage of me imploring her not to go down the slide at the park on her belly.  Lil Bit is fearless!  Besides, no one could possibly be expected to demonstrate caution and restraint with such a fun attraction beckoning!



Unless you've got a severe gross motor allergy like Josie does. In that case, the ball pit provides an opportunity for adults to lift you up to the top tier where you can remain stationary until an adult drags you down the slide while you yell "No - please - no!" the whole way down.

Or you could have a splendid time working on color recognition from the safety of the ground; Josie's foremost preference indeed!

No matter how you slice it, you'll have a ball!

 

Thanks, Dad!  You are the BEST!

Mama Hop Monday

The response to our "Ask Mama Hop" post has been absolutely incredible!  We've been so impressed by the honest and thought-provoking questions that we've received.  Because of the sheer volume of questions, and because Mama Hop is committed to offering thoughtful and sincere responses to each one, we are introducing "Mama Hop Monday". 

 

Every Monday, we will post Mama Hop's responses to a few questions, in the order in which they are received.  We will continue "Mama Hop Monday's" until the questions run out (or until Mama decides to throw in the towel and retire from guest-blogging).  So keep the questions coming, either by leaving a comment or by emailing us at DualDownsDivas@gmail.com. 

 

Question

Dear Mama Hop,

Don't have a question...
A comment, you mum is GORGEOUS.

- Christy

 

Answer

Thanks Christy! How much do I owe you? BTW, none of those photos were taken first thing in the morning.

- Mama Hop

 

Question

Dear Mama Hop,

I'd love to know how one handles anonymous death threats against one's cat with grace & dignity.

I'd also love to know how a parent (or teacher) keeps their perspective & level head while teaching and helping children learn when learning a certain task/concept, etc. can't be taken for granted.

I'm looking forward to hearing the questions and answers.

- Jennifer Scott

 

Answer

Yes, my poor misunderstood cat has had death threats, but they actually were meant for a neighbor's cat. I try to keep mine inside and if anyone comes inside, I throw him down to the basement. He has been known to bite.

 

Regarding a parent/teacher perspective, each child's uniqueness must be considered and teaching should be presented in various modalities. Then, work with the strengths. With special students, the steps are often small and repetitious. Then looking back in the long term, the rewards are great.

- Mama Hop

 

Question

Dear Mama Hop,

I have questions for Momma Hop...My daughter is two years old and carries the extra chromosome...she does not walk and her new physical therapist is advising to put her a kind of hip/leg brace..I have never seen this kind of brace on children with Down syndrome...her former physical therapist advice sure step insole...word of advice, I do not want my daughter using this kind of hip/leg brace, any advice? also, my daughter does not know how to chew and her speech therapist does not believe in oral motor therapy? Here in Florida have not met a speech therapist who performs oral motor therapy, any advice? Thank you! I think you are a cool mom and grandma!

-Hidalina

 

Answer

I am with you regarding the braces, but I don't really know your child's orthopedic issues. The insoles may be the answer. I got Leanne, 33 yrs ago, high-top baby shoes and she was walking within a couple weeks. She was exactly 2.

 

You are asking the wrong person about the chewing issue, because I still need to remind her to slow down and chew. She had major esophagus issues/surgeries and I bet I kept her on baby food until she was 3 or 4, being neurotic. Start with solids that dissolve like Rice Krispies (no, Kellogg's does not pay me). Maybe small pastas with sauce or creams would help too. If it is any consolation, I had a friend whose son refused to chew until he was like 7! He would only eat strained food or French fries. Eventually, guess he gave into peer pressure regarding eating when he started school.

 - Mama Hop

 

Question

Dear Mama Hop,

Well, I would like to know what her secrets to staying young are? Lotion, sleep, wine..what's her secret? She is so beautiful.

- Tracy

 

Answer

Wow! Thanks, Tracy. The secret of staying young is your state of mind. I'm immature. Recall the picture of Yours Truly going down the grandbabies' slide?

 

 

That's it for this edition of "Mama Hop Monday"!  I'd like to issue a special thanks to Mama Hop.  When this blog originated, it was my project and Mama Hop was kind enough to allow herself and Aunt Leanne to participate via stories and pictures.  The fact that she has now agreed to take that a step further and participate in the form of an advice columnist is truly above and beyond and I am so grateful to her for lending her time and expertise to this blog.

 

Thanks, Mom!

Love,

Elizabeth

 

Mama Hop answers your questions!

You asked for and she obliged - Mama Hop is going to do a guest blog post!

 Mama Hop & Baby Josie

 

Not only does she have 35 years experience parenting a child with Down syndrome; she also has a Masters Degree in Special Education with 30 years of teaching experience under her belt!  She's a wealth of invaluable knowledge and hilarious anecdotes.  Here is your opportunity to ask her anything you ever wanted to know about parenting and educating a child with special needs. 

Mama Hop & Baby Merryn

 

Other topics on which Mama Hop offers unparalleled expertise include:

 

* Pre-Vatican II Roman Catholic Trivia

* Better-than-Bob-Ross watercolor painting

* Staging interventions with middle-aged friends who can't let go of their Farrah Fawcett circa 1976 hair

* Italian Pinot Grigio

*Creating treasured Pysanky (Google it)

* Handling anonymous death threats against your cat with grace and dignity

 

 

* Just kidding (kind of)

Mama Hop & Aunt Leanne

 

Here's how this is going to work:  You can submit a question for Mama Hop either by leaving a comment on this blog post OR by sending an email to DualDownsDivas@gmail.com.

 

We're looking forward to hearing from YOU!

If people with Down syndrome ruled the world...

Those of you who loathe Down syndrome stereotypes may want to skip this post.  I have 30+ years of experience with Down syndrome (when I'm 85 it will still be "30+ - Ha!) and I'll be the first to admit that I'm not the least bit offended by stereotypes. 

"People with Down syndrome are so happy"  - yeah, not always; but there are worse things you could be called besides happy. 

Or "People with Down syndrome are so stubborn" - definitely, but so am I, and so are plenty of other chromosomally deprived people.

The National Association for Down syndrome (NADS) has an article on their website entitled "If People with Down Syndrome Ruled the World" by Dennis McGuire, PhD, and stereotypes notwithstanding, there is so much truth to this article. When I first discovered this article, I found it so relatable and entertaining that I immediately sent it to my mom and my friend whose younger sister has Down syndrome.  If you know and love someone with Down syndrome, I'd bet you any amount of money that you identify with at least one (if not most) things on this list. 

Leanne LOVES Grease!  I bet she's seen it a thousand times.  Danny Zuko's dreaminess is superior to anyone who has ever walked this earth...anyone except for Richard Simmons.  Remember this post?

Leanne earns a paycheck for making dog biscuits that are sold to local banks to pass out in their drive-thrus.  I guarantee you that she takes as much pride in her job as Barack Obama takes in his.  Maybe more.

Leanne talks a lot.  I mean non-stop.  It's so excessive that I ask her to please refrain from talking in the car because I need to "focus on my driving".  She reiterates, affirms, and repeats over and over and over...so much so that my mom got in the habit of affectionately acknowledging Leanne's incessant chatter with a "whatever, Leanne."  Well, Leanne now insists my mom say "whatever" before she'll abandon the conversation and walk away.  If my mom fails to utter this critical word, Leanne will demand "Say 'Whatever' Mom!" and as soon as Mama Hop says it, Leanne accepts that the discussion is over and she goes merrily on her way. 

When I ask Leanne to stop talking in the car, she obliges - and immediately starts talking to herself.  This one has definitely been covered in a past blog post.  You can check it out here.

Remember what I said about Leanne's addiction to Grease?  Well, the same goes for The Wizard of Oz, Sister Act, and High School Musical.  She knows every song and every dance move.  Heck, Travis says he knows every song and every dance move because he's been subjected to enough of Leanne's obsession!

One of my earliest childhood memories of Leanne is her getting admonished for hugging strangers in public.  Seriously.  As a small child, she would run up to strangers waiting in line at a fast food restaurant and throw her arms around their legs and hug them.  Now that she's older and more mature, Leanne has learned the importance of "personal space" (at least as it pertains to strangers).  She holds her hands straight out in front of her and says "Personal Space!" and she remains an arms-length away from you.  While Josie is a little young to identify with most of the points in the article, she is all over this one!  Not only does Josie happily offer up hundreds of hugs daily, but she's also the queen of the "SQUEEEEEEZE!"  Maybe there are people with Down syndrome who don't like hugging, but I've never met one of them.  I'm sure this topic's been covered plenty on our blog but this video is the first one that comes to mind.

I could probably come up with an anecdote to illustrate every point in the article but that would be a LONG blog post.  I'd highly encourage you to read the rest of the article on the NADS website (click here).

Josie's New Years Medley

After lunch today, while Josie was meticulously wiping herself (and her chair) off, she, Merryn, and I had an impromptu sing-a-long initiated by Josie's request for "Baby it's cold outside," a Christmas classic indeed.  This video is a little lengthy and it may be of zero interest to anyone except the grandparents but it's festive.  So without further ado, Josie's New Years Medley:

Happy 2013!