www.facebook.com/stopdisabiltyslurs

That's right!  We have our own website now and I have been fortunate to become co-founder of this excellent group.  As I write this post, in less than 36 hours, we have 388 followers.  That is three-hundred and eighty-eight people who want to take a stand against people using discriminatory language towards those with disabilities.

We are officially a grassroots movement and we are being heard.  We are making progress.  Just yesterday, the R-word.org issued a public service announcement about Universal Studios and "The Change Up".  You can read fellow founder Gretchen Mather's interview in the article:  R-word.org: Universal Studios and The Change Up's Use of Discriminatory Language

Continued progress cannot be made with YOU.  We need YOUR help.  Please join our group.  Just by the sheer numbers of followers on our website, a statement is being made.  A statement that this type of language will no longer be tolerated.

This is my daughter Ellie, just one of the people you would be standing up for.  There are many many others.  Does she look "Downsy" (I just loathe that word)?  So what?  She IS A PERSON.  She is love.  She is a child.  She is a daughter.  She is a granddaughter, a niece, a neighbor, a playgroup buddy, and a human.  Yes, she has Down syndrome, but that is not who she is.  She is too young to stand up for herself and therefore it is up to me and others to do so.

I beg you, please join us and spread the word.  Changes can only happen if you try.

After all, this movement started with ONE.  It started with Jen from Cowgirl Up!.  I read her blog and posted it on Facebook.  Gretchen read my status and blogged about it.  Here we are with our own website, logo (soon to be revealed), media contacts, and others.  It is all started with one person speaking out.


Stop Disability Slurs
Mission Statement:

STOP DISABILITY SLURS - Launched on August 7, 2011, Stop Disability Slurs (www.facebook.com/stopdisabilityslurs) is a rapidly growing grass roots cause dedicated to stopping disability slurs across the globe. Just as we do not tolerate racial, religious or sexual slurs in our society, we must take a stand to stop disability slurs. This group is for anyone and everyone who supports individuals with disabilities in any way, shape or form and has the courage to stand up for ALL unique and valued contributors to our society - races, backgrounds , religions, sexual orientations and abilities. Stand Up. Do You Have the Courage? Visit www.facebook.com/disabilityslurs for more information, or email stopdisabilityslurs@gmail.com.

Thank you!



Since our group is currently focusing on "The Change Up" movie and its use of the R-word and specifically ridiculing children with Down syndrome, here is some information:

Ryan Reynolds:Dark Trick Films, Partner
421 N Beverly Dr
Beverly Hills, CA 90210
Phone: +1 310 274 3600
Fax: +1 310 274 3670

Publicist for Reynolds:Meredith O'Sullivan, Publicist
11400 W Olympic Blvd
Ste 1100
Los Angeles, CA 90064
 Phone: +1 310 477 4442
Fax: +1 310 477 8442

The Change-Up's Director:David Dobkin
Big Kid Pictures
9000 W Sunset Blvd
Ste 1010
West Hollywood, CA 90069
Phone: +1 310 288 4300

The Change-Up's Writers:Jon Lucas
Creative Artists Agency
Talent Agent-Literary
2000 Avenue Of The Stars
Los Angeles, CA 90067
Phone: +1 424 288 2000
Fax: +1 424 288 2900

Scott Moore
Creative Artists Agency
c/o Gregory McKnight, Talent Agent
2000 Avenue Of The Stars
Los Angeles, CA 90067
Phone: +1 424 288 2000
Fax: +1 424 288 2900
gmcknight@caa.com

The Change-Up's Distributor:Ron Meyer
Universal Pictures
100 Universal City Plaza
Universal City, CA 91608
Phn: +1 818 777 1000

Stop Disability Slurs! The Change Up

Since writing this post late last night (8/7/11), our Facebook page "Stop Disability Slurs" has jumped to over 107 "likes".  Please spread the word and if you have not done so, mosey on over to Facebook and like our page Stop Disability Slurs: Do You Have The Courage?  Do not forget to spread the word.  We are hoping to drastically increase our numbers.  We need to unite and take a stand.  Please continue to visit our page for updates.  Thank you!

No, I have not seen "The Change Up" staring Jason Bateman and Ryan Reynolds.  No, I will not be seeing this movie ever.

If I were to say "n*gger", I would be yelled at.  If I were to say "W*t Back", again, I would be chastised.  If I were to say "f*ggot" or "that is so gay", I would be told I am being offensive.  All of the above is completely derogatory, unacceptable, and I would never use those words in jest or in anger.  It is just plain wrong

So how is calling someone "r*tarded" or saying "oh my that is so r*tarded" or "I am such a r*tard"not offensive I ask?  My daughter has Down syndrome, she is retarded in the sense that she has slowed growth or developmental delay.  My daughter is 22 months-old.  She cannot stand up for herself yet.  Therefore, it is my JOB as her mother to stand up for her.

What does this have to do with "The Change Up" ?  A friend of mine brought to my attention that the movie not only uses the word "r*tarded" within the first 15 minutes of the movie, but it also specifically pokes fun at Down syndrome.  For real you ask?  Oh yes.  For real.  In 2011, Hollywood still thinks it is appropriate to poke fun at those with intellectual disabilities.  Those that many not be able to stand up for themselves.

Now, are you ready for the kicker?

RR's character looks at JB's twin infants as says "Are they r*tarded?  This one looks a bit Downsy."

How is that not offensive?  How can I not be enraged?

Now, I know that you do not know my cyber girl Jen at Cowgirl Up! and you know that I have not seen the movie.  How do I know this to be true?--it is also listed in a movie review of The San Francisco Chronicle: The Change Up: Dude watch me mess up your life

This leads me to a fabulous campaign that I am asking you to join.  It is easy.  Really really easy.  If you love my daughter. . . if you love someone with an intellectual disability. . .if you think this is offensive, then please, I am begging you take a stand.  Gretchen at Julian's Journey outlines a series of ways to take a stand.  It is as easy as liking the FB page Stop Disability Slurs!

Stop Disability Slurs! BOYCOTT The Change Up

Latest DIY Project

Looks like our "newish" door is malfunctioning.  It likes to remainder locked even when the dead bolt is turned.  Andrew and little Ellie found this out the hard way when they got trapped outside in 100+ degree heat.  Do not ask about the plywood--that is Andrew's area of expertise.

And in case you missed it:

Many Faces of Ellie: Tuti Fruiti Tutu and Converse

This has nothing to do with the sock snake

The Sock Snake--because this one is just plain funny

Silent Sunday: Shoes & Tutus

Ellie's cyber Auntie Cathy created the festive skirt, personalize T-shirt, happy hairbow, and rockin' tutu just for The Bear.  The shoes used to be her daughter Lily's and Ellie thinks they are awesome.  I think that they are pretty awesome too!  Many thanks to dear Cathy!!!

Cupcake Converse Shoes--I need some!

"MMMmmmm, I just love these Converse shoes."

"These are my shoes and you cannot have them!"

The Escape Artist

Look!  I have more teeth!

My darling daughter has excellent gross motor skills.  It is actually her developmental area of strength.  She is a climber.  She take risks.  She seems to feel less pain upon falling than many of her peers (see SPD posts).  This all scares the you-know-what out of me, but I let her learn through her "exploits".

Recently, my husband and I watched dumbfounded as she escaped from the high chair constraints at Kerbey Lane Cafe and ended up on the table in 2 seconds flat (she could win an award for fastest table climber).  Upon which she shoved an entire half of a PB & J sandwich into her mouth.  Of course, in spite of my shock and fear for her safety, I laughed.  I mean come on!  A little 20 pound Bearity Bear-Bear just hopped up onto a table and shoveled food into her mouth like we never ever feed her. We received some interesting stares.  Seriously, like I allow my kid to just eat on top of a table.  Nevermind, ignore that last sentence.

Why is that woman in the background giving me "the stink eye"?
She must be insanely jealous of Ellie's acrobatic skills.

Then the grocery carts.  Oh the grocery carts! There have been many battles and one too many near misses to count.  Ellie does great if the straps are up high under the arms/across the chest--like those at Central Market.  She defies gravity if strapped into those at Michael's, HEB groceries, or Target for those straps sit across her thighs.  It is disastrous at Half-Priced Books.  Their restraining belts sit lower on the body and she just stands right on up and nearly topples to the ground.  The chunky chicken is adamant that she turn around in the cart or that she must stand or sit sideways.  Toys, distractions, and bribery do NOT work.  If I leave her unrestrained, she does better.

I believe a concussion, a broken clavicle, or a broken arm is in our future.

What is with the "Surfer Bear" on the slide?

After brainstorming with Jan, our developmental therapist, we determined that it is a sensory input issue.  She needs some grounding, some pressure.  This is where the "sock snake " comes in.

Oh yes, I am doing another tutorial.  The concept is similar to a weighted blanket only it is much smaller and is it cheaper.  The plus is that you do not have to sew.  At all.  Jan says to use a men's tube sock.  Fill sandwich bags with beans or rice and then stuff bags into the sock.  Tie off the end with a knot or use a rubber band. Viola!  It is that simple.  I apologize if this sounds dirty.  Get your mind out of the gutter!   The "sock snake" (I said out of the gutter!) is to be draped across Ellie's lap when in the high chair or grocery cart.

Keep scrolling because I show Ellie with the finished product.  It is hilarious.  I promise.

Materials: 

1. Bag of beans or rice

2. Zip-lock bags  (I used the smaller snack bags)--After this little experiment, I now recommend sandwich bags that you can close with rubber bands as the corners of the zippies poke through the socks.

3. A tube sock 

 * B/c the tube sock is boring and well, frankly, ugly, I am going with fun, snazzy knee high socks from Target.  Cheap and happy.  Ellie picked out the socks.*

As with the weighted blanket, you are going for ~ 10% body weight.  

A 2-lb. bag of pinto beans worked for us. 

1/2 cup of beans ~ 3 oz -3.2 oz.

It took me about 10 bags to fill the entire sock. 

When completely filled, knot the end or use a rubber band.

The corners of the zip-lock baggies poked through the cheap socks.

To remedy this, I slipped the partner sock over the sock-snake.

Now, does the "sock snake" work?  See below.  We got some pretty funny stares.

Hummmmm.  What is this thing?

Okay, it seems to be working.  Look at how nicely she is sitting in the cart.

Oh oh and some oral sensory thing going on.  Must taste the "sock snake"

And over it goes.  At Costco, a young guy started to pick it up and then changed his mind.
The "sock snake" must have scared him.

This morning I quickly threw together a "heavy-work" cart for Ellie as we headed into Speech Therapy.  I believe this shall be the new and improved use for the "sock snake" and "weighted backpack".  It worked like a charm for the Bear as she didn't even need to be strapped into a chair for most of speech therapy.  Plus, all of the occupational therapists proclaimed their excitement over our "heavy work" contraption and they now they want to "steal" the idea for some of their clients.

Weighted stroller--backpacket bear weighted with rice.  Sock Snake weighted with beans.
See, the bear needs a weighted sock snake.  Do not ask about the green straw--that is another post entirely.

Do not forget about my "daughter of the heart" Tabitha,  Francine, and little Elden on Reece's Rainbow as they desperately need families.

*I apologize for the poor quality of photos.  Most of them were taken with a cell phone.  


**Because it isn't safe to be snapping photos of my daughter while tumbling out of a grocery cart and jumping out of a high chair, you will have to settle with indoor mall playscape photos.


***Seriously, I will get to Ellie's developmental update and our ABA eval results soon :-)

Endoscopy Update

After a night of tossing and turning with nightmares featuring punctured esophaguses, bleeding vessels, a perforated small intestine, and death (DEATH due to anesthesia), I awake to a hungry, cranky Ellie Bear.

DO NOT FEED THE BEAR.
"Please feed me.  I am SO hungry."

Cranky Bear was permitted to drink clear fluids for a few hours in the morning.  These clear liquids found their way all over my hand and her shirt while at The Coffee Beanery & Tea Leaf.  "Could I please have a napkin?  Don't worry, it is just some regurgitation of pedialyte."

Ellie Bear aka "the Human Water Fountain"

My dear friend Sheryl and her little Jack-A-Roo had us over for a relaxing, pre-op playdate.  Nothing like distraction to bring a smile to Ellie's face and to ease my Mama Bear fears.

Pre-op cruising in the wagon.  She is totally stylin' in yellow

"Look!  I am driving"

The Bear rocked her endoscopy.  Needless worry on my part.  Have I ever mentioned that I have an anxiety disorder?

Aren't they beautiful?  All pretty and pink.  No irritation, redness, or funky growths.

See the esophageal sphincter and the pyloric sphincter?  Also beautiful and lovely.

Post-op: "I will rip this IV out with my teeth if I have to!"

Seven biopsies were collected--2 from the esophagus, one from the stomach, and two from the stomach.  The mucosa looks NORMAL!!!!!!!  Whoot whoot!  Normal villi of the small intestine (tiny hairs) that make the likelihood of celiac's disease very low!!!!  Yippy!  The sphincters "opened easily" as per Doc B.  Happy dance!

Going home.

Apparently, Ellie Bear does NOT have reflux.  Huh?  This is good news.  This is baffling news.  Way back in the day, her barium swallow showed reflux, but perhaps she outgrew it.  The lovely pictures above pretty much prove there is no reflux.

The big question is: what is causing the spitting up?

The answer:  I do not know.  The doctor does not know.

Mama bear, with a knack for excessive worrying and a perchance for shear panic, does not do well with uncertainty or "I do not know.".  Nonetheless, I am relieved that we are able to rule one thing out.  I am relieved that she does not have any upper GI damage do to stomach acid.  I am relieved that there were no funky polyps, or growths, or papillomas, or tumors, or ulcers or anything else I can imagine.   (also teething, drooling, and excessive saliva are not causing this).

Didn't you know that hospital anklets are all the rage these days?

Now, we wait.  We wait for the biopsy results.  Even though all looks fabulous to the naked eye via endoscope, there can be some eosinophilic esophagitis due to some allergy.  As to what she would be allergic to--well, that is another question.  Chronic antihistamine use might be in our future.  Either that or we will have a chronic spitter.

"The happy juice is making me feel a little drunk right now."

The Chunky Chicken (Tuna of the Sea) doing fabulously.  Thank you for all of your well wishes, prayers, and support.  It means so much to our family.  Thank you!

Look out Amelie and Tama!

A Tad Bit Nervous

Tomorrow is Ellie's endoscopy (reflux and more reflux) with a possibly biopsy of her esophagus.  I must admit that I am a tad bit nervous.  I am nervous about the anesthesia, the procedure, and the findings.  Ooh, and then the treatment.  You would think my darling, wee little Ellie Bear never had surgery before.

In fact, I am sure that I look a bit like this:

Eh, perhaps I am a bit more anxious--thinking full blown panic mode.

I shall sign off with happy Ellie Bear photos since I must instigate pre-op starvation at 3:00am.  That will lead to a Miss Cranky Pants practicing her Robert Plant / Axel Rose / Steve Tyler screeching.