Wednesday, March 28, 2012

Are You a Sponge or a Honey Badger?

I would say that overall, I tend to be a positive and happy person.  I mean, come on-- the name of this blog is "Cowgirl Up!" which means that when life throws you off your horse, you have to dust off your jeans and get back on-- you know, you have to Cowgirl Up!  Last week we celebrated World Down Syndrome Day and it was amazing.  I would have written sooner, but life has been getting me down.  I mean down.  Down down.  Then I never know-- should I share these down moments or do I suck it up and move on?

The Sponge

This is where the Sponge versus the Honey Badger comes in.  One of my dearest and most wonderful friends in the world, Kelly Lee, once told me that we were both "sponges."  Only she said it in her super cute Southern accent like, "Gin, we are sponges." Gin is the Southern version of Jen and it sounds best when Kelly Lee says it.  It was an Ah-ha moment.  A sponge!  That is exactly what we are.  We soak up what is going on around us and take it to heart.  

Kawaii Cute Kitchen Sponge Set 3 in 1 Pot And Bowl
Aren't these cute sponges? You can buy them here.
Being a sponge is hard work.  Wanting to save the world and make a change can be overwhelming and for some reason when it starts to get to be too much it all happens at once.  I remember being so overwhelmed by all the sickness and pain in the hospital after Joey's heart surgery.  It really got to me and I didn't know how to deal with it.  My mom told me to never lose that empathy and I've tried to keep that in mind.  Empathy and compassion are what makes us humans.  It is what makes us stand up for what is right and fight was is wrong. 

Having a son with Down syndrome is not what has been making down.  In fact, Joey does just the opposite.  He and his brother raise my spirits and give me a reason to try and do my best every day.   Joey inspires and awes me with his tenacity and his impervious attitude toward the world around him that wants to know why he can't stand up on his own, why he doesn't say more words or why he isn't able to walk, yet.  It doesn't bother Big Joe, so why should it bother me?

What gets to me sometimes is convincing the rest of the world of Joey's abilities and of his value.  Trying to convince them to see him as a person first-- not just a disability.

I would also like to preface this with the fact that we are really, really grateful for the majority of doctors, nurses, therapists and medical personnel who make Joey's life and our lives so much better. That being said, because of the inordinate amount of appointments and medical personnel we see, we tend to also sometimes have some, ahem, not so positive experiences.

"Downs Kids"

Last week I double booked the boys at a new medical treatment center (that's a nice generic description, right?). I specifically booked them with a particular physician (or so I thought) at the recommendation of another physician.  Confused?  I am too.  The appointment was a hot mess from the word go.  After filling out 8 pages of forms we finally made into an office where we were interrogated as to whether or not we'd be paying cash for our dental appointment (oops--not so generic) since we do not have dental insurance (stated loudly to the entire waiting room).  They also wanted my social security number as well as my husband's and I politely refused.  This was seriously going to hell in a hand basket pretty quick.  I assured them that the appointment would be paid for in full despite the fact that we do not have dental insurance.  That was right around the point when Joey started to projectile vomit, which is his signature move when he has aspirated on something.  Not kidding.  Projectile vomit.  That was bad enough, but then he started to choke on his vomit, turn blue, cry and eyes started rolling back all at once.  Nightmare.  Then the woman who wanted my cash/social security number/first born proceeded to sit calmly across the desk from me while our show was going on.  Finally she asked if I needed anything.  Um, yes, please.  A do-over perhaps?  A cocktail?  I just asked for maybe a tissue to try and repair our vomit covered outfits (not a wet-wipe to be found on me-- my own fault--it was that random 80 degree day and I was sweating from head to toe).  

When I thought things couldn't get worse we get back to the chair and find out that because Joey has a leaking mitral valve and a patch on his heart from his heart surgery, he can't actually get his teeth cleaned because he is at risk for endocarditis and will need to be on antibiotics before any  Not a big deal.  Just not what we needed on that particular day.  Tommy was able to get his teeth cleaned and we were told by the doctor (not the one we had made an appointment with, but some other doctor) that Tommy needed to lose his "dog-dog" lovey and stop sucking on his fingers.  I get the fingers.  I really do.  But "dog-dog"?  Really?? REALLY?????  I THOUGHT WE SIGNED UP FOR A DENTAL APPOINTMENT AND NOT A PARENTING CLASS!!!!

Surely this torture session was over.  The doctor wanted to take a look at Joey, so I (foolishly-- oh so foolishly) let him sit in the chair.  BIG MISTAKE!!!  The minute you let your kid sit in the chair-- THEY WILL CHARGE YOU!!!!  The doctor counted (not kidding--counted all 12 of his teeth) and then we were charged $62 for a "complete oral exam".  The doctor then went on to tell me all about "Downs" kids.  Here is the sponge part.  I try to be impervious, like Joey, and ignore it when people use what we call the "short cut" and say "Downs" kids or "Downs" babies instead of people who have Down syndrome or a child with Down syndrome.  I've really tried to get a thicker skin.  As much as I am a huge advocate for People First language, which recognizes the person first as an individual and not just a disability, I am also trying to learn to pick my battles and give a little grace to people who may not know that People First language is preferable.  But here is how it went down, "Well, Downs kids have strange teeth.  Downs kids' teeth come in out of order.  Downs kids may not get all of their teeth.  Downs kids may need implants."  And on and on and on.  Ugh.  $62 for that.  Well-- $62 for that helpful information, but $195 for the entire appointment.  I was soaking it all in and getting angrier and angrier by the minute.  Now-- I will say I learned a token of good information from this hellish appointment, "Downs kids don't usually get very many cavities."  There you go-- Cowgirl Up!  One last thing-- this appointment was on World Down Syndrome Day-- just saying-- the irony, oh, the irony. 

Boys-- let's go to Starbucks and do a little caffeine therapy for Mama.


The next day, Joey and I headed off to another appointment with a medical professional that we have not seen in about three months.  I pushed Joey in his stroller and started to get situated.  First question, "Is he walking yet?"  Um.  Well.  No.  He's not walking.  He's not standing independently.  He's not pulling up on anything.  He's got this crazy arm/toe combination army crawl thing down, though.  

Then came the questions about what words he is saying.   There aren't a whole lot of words, but we usually know what he wants or is feeling.  "So he hasn't made in progress in his language."  That is totally not what I said.  I feel like he has made a lot of progress!  He's got vowel sounds, "k" sound, "n" sound, "b" sound, kind of "th" sound.  He can sign "more" and wave hello and goodbye.  He puts his arms up when he wants picked up.  
Super Joe can also do these crazy Baby Planks where he is on his toes and hands!

I'm not sure what was going on, but this particular medical professional had a visiting RN in our appointment I started to get the impression that she was trying to show off for the RN.  When Joey wouldn't spoon feed himself she said, "Well you are just a spoiled boy, aren't you."  Ouch. Loved?  Absolutely.  Spoiled?  Maybe.  But the thing is, if you just give him a little bit longer than a second, if you stop and wait a moment, he will usually do it.  That is one of the most valuable things I learned from our amazing Language/Speech therapist--OWL.  Observe.  Wait.  Listen.  The middle one-- the Wait-- is the most important.  The thing is, sometimes things just take our little lovebug a little bit longer.  The waiting is the hard part.  It can seem like forever.  Like a pregnant pause, but longer.  So long, that you almost want to give up and then it clicks.  

The Honey Badger

What does any of this have to do with a Honey Badger?  Have you ever even heard of a Honey Badger?  According to Wiki, they are "notoriously fearless and tough animals" who are tireless in combat and will attack animals much larger than them.  Their incredibly thick skin makes it difficult for other animals to bite it and penetrate it.  Can you imagine?  To have such an incredibly thick skin!!!  I am so envious!

The Honey Badger is a new marital joke in our family.  The good thing is that while I am a Sponge, I am married to a Honey Badger.  I told Tom about the doctor who kept saying "Downs kids" and he deadpans back to me, "Well, honey, it's so much shorter."  He said it with his glint is in eyes knowing that I need a little humor to calm me down.  I tell him about the medical professional who called Joey "spoiled" and he says, "I thought you were going to quit seeing that person because those appointments aren't helping Joey at all."  He's right.  He always is.  He is our Honey Badger.  Because, guess what-- the Honey Badger don't care!

Have you seen the video?  Just a warning-- it is mostly "R" rated for animal violence and language, but my goodness, it gives me a good laugh and helps me feel braver.  I so very much desire to be more like a Honey Badger and less like a sponge.  If you are offended by curse words, you may not want to watch, but if you need a good laugh, you may really want to watch.  

So, in our house we co-exist in our Ying and Yang state of being where I am a Sponge and my dear husband is our resident Honey Badger.  

When the pains of the world get to be too much to bear I turn to him and his strength.  

Say a Little Prayer

Last week I learned that a women in her early 30's who has Down syndrome and is the niece of the kind woman at Tommy's gymnastics was in the hospital and is now on a feeding tube and has a tracheotomy because her pneumonia took a turn for the worse.  This just eats me up.  Please say a prayer for "A". 

Then I learned that our dear friend from church, who is also a women in her early 30's who has Down syndrome, has a dual diagnosis of Down syndrome and schizophrenia.  This too eats me up.  Her parents are such incredible people.  So calm.  So kind to our boys when they are wild in church and their daughter, I'll just call her "D" to maintain her privacy, is such a joy to get to go to church with.  She hugs me every week, kisses me on the face and calls me her favorite friend.  My heart aches that she is also living with schizophrenia.  Please say a prayer for "D". 

Finally there is the big C.  The C that all parents who have a child with Down syndrome worry about deep in the back of their mind and heart.  Cancer.  While people who have Down syndrome may not have a very high chance of getting cavities, there is a much higher risk than the regular population of getting Cancer.  Right now, there is a precious little boy, Oliver, who is battling leukemia (AML).  He has been in the hospital since February and will be there for at least six months receiving treatments and fighting the leukemia.  I honestly can't really talk or write about Oliver for more than a few seconds before my eyes tear up and my nose twitches and I try to fight back tears.  Tears for dear Oliver.  Tears for what his family is going through.  Tears for all of those precious kids fighting cancer.  You can read more about his story here.

One of our own blogging mama's is doing her best to help find a cure for childhood leukemia.  Meriah, over at With a Little Moxie is training for a half marathon to help raise awareness and funds to fight cancer.  This is what I think of Meriah, even though this is what she sent me as a thank you for our donation:

Super Meriah!!!
Oh, and did I mention that this is Meriah's first half marathon and oh, by the way, she is pregnant.  YOU GO GIRL!!!!  Here is her story.

If you would like to donate to Meriah's team on behalf of Oliver, please visit here.  Please say a prayer for Oliver and also one for Meriah's journey.

Was this a long-winded, slightly off track, rambling post today?  It was and I apologize.  I'm going to go read a few pages of "Bossypants" (thank you, Shannon!!!  I need some humor!) before bed.

Before you go to bed, ask yourself-- are you a Sponge or are you a Honey Badger?

Wednesday, March 21, 2012

Happy World Down Syndrome Day!

This is the first year that World Down Syndrome Day is officially recognized by the United Nations!  World Down Syndrome Day is celebrated on 3/21 to symbolize the 3rd copy of the 21st chromosome in Trisomy 21, which is the most common form of Down syndrome.  To be honest, I feel like now is an incredible time to have a child who has Down syndrome.  There are many resources both in our community as well as online.  We are able to communicate via email and messaging with parents all over the country who also have children with Down syndrome.  

Today is also the one year anniversary of Cowgirl Up!  Just one year ago on World Down Syndrome Day, I started our blog.  How did a year go so quickly?

We have also had the privilege to meet incredible local families who share in the journey with us and who take time to meet with us and share their families' experiences in trying to guide us through our own.  Because of Joey's extra chromosome we have found many, many extra blessings.

We are planning on having a BIG Wednesday to celebrate Joey's extra chromosome all day.  (What is also very cool about 3.21 is that both his cousin Carly and his uncle Eric celebrate their birthdays on 3.21 as well. Happy Birthdays to Carly and Eric and Mallory (who's birthday is just 4 days later on the 25th)!

A couple of Joey and Tommy's little buddies are going to stop by after school to help us celebrate the big day with some cupcakes, snacks and a special story we are going to read together.

Down syndrome has changed our lives forever in an incredible way.  One thing I know for sure is that Joey's extra chromosome is packed completely with joy, laughter and love. I don't know how, but him having Down syndrome has managed to sharpen my lens on life.  When you go to the eye doctor and they try different prescriptions and suddenly one of them is super clear-- that is what Down syndrome has meant to us.  Every single day is meaningful.  Every single day we are grateful that Joey has made it to our arms.  Every single day we feel so grateful to have him in our lives. 



One of our online friends at Nuts About Nathan posted 21 Facts about Down syndrome and I thought that was a wonderful idea to help spread more awareness about Down syndrome.  We've borrowed a few from their list and some others from the National Down Syndrome Society.  

Thank you for sharing in our journey as we learn more and more about Down syndrome every day of the year.  As our Buddy Walk Team shirts say, "Love Doesn't Count Chromosomes."


Facts About Down Syndrome

Down syndrome is the most common chromosomal condition in the world.

One in every 691 babies in the United States is born with Down syndrome.

There are more than 400,000 people living with Down syndrome in the United States.

Down syndrome occurs when some or all of a person's cell have an extra, full or partial copy of the 21st chromosome. This additional genetic material alters the course of the development and causes the characteristic associated with Down syndrome.

Down syndrome occurs at conception.  Nothing in the pregnancy "causes" Down syndrome to occur.

Down syndrome occurs in people of all races and economic levels.

Children with Down syndrome have a 15-20% higher risk of leukemia. 

There are 3 types of Down syndrome:
Trisomy 21, Mosaicism and Translocation

  • Trisomy 21 occurs when three copies of the twenty-first chromosome is created instead of only two. This results in the person possessing 1 extra chromosome (47 chromosomes instead of 46). According to the NDSS Trisomy 21 is the most common form of Down syndrome and accounts for 95 percent of all cases. 
  • Mosaicism Down syndrome occurs when some of the cells within the twenty-first chromosome have three copies (like Trisomy 21) and the others have the standard two copies. The NDSS reports that this occurs in 2 percent of Down syndrome cases. 
  • Translocation appears when there are three copies of the twenty-first chromosome, just like Trisomy 21, but one of those three chromosomes becomes attached to another chromosome, instead of staying separated. According to the NDSS this extra twenty-first chromosome can become attached to the 13, 14, 15 or 22 chromosome and accounts for 3 percent of Down syndrome cases. 
Normal Chromosomes (Male)
A typical set of male chromosomes

A male with Trisomy 21.
The 21st chromosome is the smallest of all the chromosomes.  

The average life expectancy for people with Down syndrome was 9 years old in 1929.   In 1983 it went up to 25 and today the average is 60.  The oldest known living man with Down syndrome, Bert Holbrook, just passed away in early March at age 83! 
Down Syndrome Pregnancy offers a free downloadable pregnancy book called "Diagnosis to Delivery: A Pregnant Mother's Guide to Down Syndrome".
Congressional Down Syndrome Caucus (CDSC) has over 70 Members of the House of Representatives, and is led by Reps. McMorris Rodgers (R-WA), Pete Sessions (R- TX), Van Hollen (D-MD), and Holmes Norton (D-DC). The mission of the CDSC is to educate Members of Congress and their staff about Down syndrome. The Caucus supports legislative activities that would improve Down syndrome research, education and treatment and promotes public policies that enhance the quality of life for those with Down syndrome.  *From Ohio- Reps.Tim Ryan (OH-17)and Pat Tiberi (OH-12) are both members of the CDSC.

Down Syndrome Daily is a wonderful resource for daily news updates on the latest in the Down syndrome community.

Princess Diana's Goddaughter, Domenica, has Down syndrome. 


Many children with Down syndrome are included in regular education classrooms alongside their peers.  Research has shown that this has positive effects on the academic and social experiences of students with and without disabilities. Celebrate inclusion this World Down Syndrome Day!
The bipartisan, bicameral Achieving a Better Life Experience Act (ABLE) of 2011 (S. 1872/H.R. 3423) was introduced on Nov. 15th, 2011. The bill, which is supported by 83 Representatives and 9 Senators, gives individuals with disabilities and their families the ability to save for their child's future just like every other American family! 

There are many, many more facts about Down syndrome, but most important of all is spreading the word that people who have Down syndrome are more like everyone else than they are different.
Happy World Down Syndrome Day!!!


Thursday, March 15, 2012

Things We Really Love Right Now: The Green Monster Smoothie & Erin Condren Everything From Calendars to IPhone Cases

In less than one week, the WORLD, yes, the WORLD, for the first time ever will be united in celebrating World Down Syndrome Awareness Day on 3.21.12.  This is the first year that the day is being officially recognized by the United Nations!   If you would like to add the "badge" to your Facebook profile or elsewhere- visit here.  You too can celebrate and add a badge like Joey on our Facebook page. 


In the meantime, we've been busy going to therapy, working on crawling, moving from sitting to tummy, practicing standing, working on words, trying to learn new signs.  You know-- just your usual 1 1/2 year old kind of every day stuff. :-)

Most of today's post is not about Down syndrome, but is about some fun "stuff" we currently really, really like.

The Green Monster Smoothie

One of our new favorite blogs has nothing to do with Down syndrome, but is a seriously awesome blog about healthy eating and cool stuff.  I also just really love the name of her blog: Iowa Girl Eats.  Straight up Midwestern goodness!   My new obsession on her blog is The Green Monster Smoothie.  Of course I found her blog and this recipe via Pinterest, which is like opening Pandora's box of good intentions.  Want the latest, hardest workout?  Visit Pinterest.  Want to know how make the most insane decadent dessert? Visit Pinterest.  What to find a million adorable crafts you will never have the time or energy to do? Visit Pinterest.  


Can you guess the main ingredient???  Nope-- not coffee.  I just needed a cup with a straw to drink it for some reason.


I almost hate telling you what it is...


Did you guess it?  Yep-- spinach.  Almost 4 cups of spinach.  This recipe had me digging through every single cupboard for the blender we haven't used since we got married almost 8 years ago.  It had me out buying (finally!) a salad spinner so I could have my spinach nice and ready at any moment.  

I've used both skim milk and almond milk and they are both great.  I also like the "honey" version of the fat free Greek yogurt. Finally, I add in a scoop of vanilla whey protein.  I swear to you-- if you mix it right, you don't even taste the spinach!!!

Green Monster Spinach Smoothie

Serves 1
1 frozen sliced banana
1 Tablespoon peanut butter
1/2 cup 0% Vanilla Chobani Greek yogurt
1 cup Unsweetened Vanilla Almond Breeze (or other kind of milk)
4 cups baby spinach (or more, or less)
Combine all ingredients in a blender and blend until smooth.
Nutritional stats:
350 calories, 10g fiber, 21g protein

Erin Condren
One of my friends had this gorgeous planner with colorful dividers, inspiration quotes, a pocket in the back, extra pages for notes and every other piece of goodness a person could possibly want in their planner.  We have a lot going on.  I literally am immobilized without my calendar and refuse to rely solely on my phone for an electronic calendar.  I'm a pens and paper kind of girl.  I need to write a list, write another list and then have the satisfaction of crossing items off of those lists.  This is where the Life Planner comes in. Doesn't that just sound helpful?

I've been using it since January and it is by my side at all times.  I seriously have a big crush on Erin Condren's Life Planner!  My only complaint is that through my use and abuse the monthly tabs started to wear out and one night I laminated all 12 of them. I'm pretty sure I have some issues.  That would be my one piece of feedback to this awesome company.  

Here is my other favorite, favorite, favorite fun item from Erin Condren right now-- trust me, they have lots more!
The Personalized Iphone Case
Oh-- how I love looking at my precious men all day, every day!  My super fun Iphone case lets me do that.  

It was so easy-- I uploaded a photo (by Nat) and they sent me a proof before they sent the final phone case and I am so in love with it.  Wouldn't this be an awesome birthday, graduation, holiday, anniversary, or Easter gift?

The People We Love

Doesn't really require much more to say about these photos other than these are the little people that make every day so amazing.

Practicing standing! This is right before he fell backwards as I tried to help hold him up and photograph him all at the same time.  
Dance party!!!!
Thomas Henry-- love this boy and his incredible, independent spirit.  
The beautiful Dorothy and Joey chilling at the park.

Wednesday, March 7, 2012

3.7.12 - Is The R-Word Just A Word, Or Is It A Reflection Of Intolerance In Our World?

Today is March 7, 2012, which is the Spread the Word to End the Word Day.  If you haven't done so, you can visit here to take the pledge to stop the use of the R-word.

This is cross-post from our website called The R-Word Reporter, which is meant to be a place of education, awareness and empowerment.

We hope you will consider, even if you don't understand, our passion about this. 

Happy Wednesday!

The R-Word Reporter

The reason I started The R-Word Reporter was because we attend a lot of movies and I was tired of hearing the R-word ("retarded" for those who do not know) used consistently in many of the movies we were paying money to go and see.  I searched high and low on the internet for a place to try and find out whether or not the R-word was used and in which films. Unfortunately, I never found such a place and decided that it would be nice to have a place where I could compile this type of information for our family and for others who are also offended by the casual use of the R-word in pop culture.

The purpose of The R-Word Reporter is to empower consumers like you and I to make informed entertainment decisions. To provide us with knowledge and information before we take our families to see a movie, watch a television show, read a book or even listen to a song.  This is not meant to be a place to create boycotts.  This is not a place of hostility or anger. It is meant to be a place to provide knowledge, education, consumer choice and hopefully social change.  

Some people say, "It's just art and you shouldn't try to interfere with creativity."  Other people say, "It's just a word."  And still others say, "It's not real life, so it shouldn't bother you."

There are others who say they are offended when they hear a celebrity or someone else use the R-word in an "off the cuff" manner, but not when they hear it in a movie or a television show.

My personal stance on this aspect is that as humans we sometimes mess up.  We sometimes use words that are not the kindest or the best choice.  We sometimes speak before we think.  While I really hate hearing people casually use the R-word to describe themselves or something else, I also have no ill-will towards people who use the word without thinking and then feel bad for using it. 

What does concern me with the excessive use of the R-word in pop culture (ie: songs, movies, books, tv) is that it takes premeditation and forethought to use the R-word in such contexts.  Also-- when a character uses the R-word in a movie or television show, it just puts that word back into common lexicon and makes it appear "okay" to use that word.  Using it to "develop" a character or show a character's flaws is really not justified, in my opinion.  There are many, many other words that can be used and I have yet to see a film in which the R-word is used in a kind, meaningful or even an educational manner.

So we ask, why is it still socially acceptable to still use the R-word?  Is it because, as a society, we fear differences?  Is it because we don't know how to interact and live side by side with individuals who might be a little slower in their speech?  Is it because we fear that by campaigning for the respect of individuals with intellectual disabilities that we might somehow be associated with them?  What exactly is it?  Why doesn't our society, as a whole, stand up for individuals who have a disability and fight for them and advocate for them wholeheartedly?

Why is it okay to make fun of people who have an intellectual disability?  Why is it okay to call someone a "retard" in a movie or in a book?  Why are the n-word and the f-word no longer socially acceptable, but the r-word is?  Why is that?  

I would be remiss in saying that this group of individuals who have been called "retarded" can't stand up for themselves, because that is simply not true.  But-- this group is still a group that society, as a whole, seems to think is okay to bully, to pick on and to label with a hateful word-- the R-word.

My last post on "The Grey" stirred up some interesting comments.  And by interesting, I actually mean hurtful, hateful, angry and somewhat scary comments.  I really had to think hard about moving forward with this blog.  I had to give myself a serious pep talk about getting a thick skin and not being afraid of such statements as the following that were left in the comments:

"Blogs like these border on being overzealous and actually are going to make people that are on the fence decide that this cause is going too far & turn them off to doing what is right."

"Mentally Retarded is the official clinical name for the disorder.  If you can't handle that, you might as well jump off a bridge, because the medical association has no such qualms about calling it what it is, mostly because they're not a bunch of fragile, hand-holding helicopter parents.  There are people starving to death in the streets of our own country, and you're worried about a dubiously offensive term? Get real. Grow up. Welcome to life."

"This whole movement is utterly ridiculous, it isn't the mentally disabled that are offended or marginalized by the "r-word," its the self-righteous parents and other bored, humorless, politically correct suburban housewives who desperately need a cause to champion in order to make their lives seem worthwhile." 

On the other side, were some incredibly supportive and inspiring comments that helped me realize that there are many, many others out there who would also like to see the use of the R-word disappear: 

"Ultimately the culture we live is a cycle, culture affects art, art affects culture. We are just doing our part to affect it. Silly? I don't think so. Naive to think we can affect it without a fight? yep. But I will make my silly effort none the less."

"In response to Anonymous, I would just say I am 33 years old, and have said many things in my life that I regret saying. Sometimes I would regret it as it was coming out of my mouth, other times I was just not aware that I was hurting anyone and felt terrible later when it was pointed out to me. Now as a parent of 3 beautiful children, one who happened to be born with T21, hearing the r-word cuts through my being like I have just been tazed. This stunned feeling is then followed by rage, which I would assume is a protection response like a lion to its cub. I am not uber PC or any crazed polictical fanatic on either side, I am just aware now that these words (whether used with malice or just as an emphatic descriptor, not having anything to do with a disability) hurt those who have the disability and their loved ones, who are only trying to protect their own from unnecessary ridicule."

"I love this site as it gives a chance to educate so many. I love to talk about the power of the R word. I also would love to take responsibility for giving it power because that also might mean I could get that power back. But unfortunately none of us can do that so easily. We did however come together recently when the power of that word was used to deny a child an organ she needed to live. Yep, we all got together and said NO! You can not use the power of that word to say this child has less value than another. So if some think we are over zealous then I say we have every right to be. This unfortunately is the power of that word.  And, if a movie takes you away from the movie, from the character, then the movie did a bad job. Editors spend hours combing footage for any inconsistency that might make us the viewer "leave" the film. When this word is said, overzealous or not I "leave" the film. I hear nothing but that word for the rest of the film. So many of us are just trying to say we do want the power of that word back. We do want you to be respectful Mr. Producer and let us enjoy your film too."

"Dear Anonymous, 
We don't need to get real as we already are very very real. Nor do we need to grow up - we are very grown up. And above all else, we already do welcome life and have no intention of jumping off a bridge no matter how difficult life gets. Some studies suggest that the mental stress of parenting a child with a disability is comparable to the mental stress of combat. That doesn't sound like fragility to me. That sounds incredibly tough.You are right though, we do tend to reach out our hands to hold onto each other.But, I am thinking that perhaps you meant "hand-wringing" instead? Well, we don't have time to sit around and wring our hands do we? If you knew anything about parenting a child with a disability you would know that much of what we do is work towards the day our children can live independently in a community that welcomes and supports them. We don't want to hover over them forever, as your helicopter parent term suggests. We are working together to make life(as in the world) a better (some would say a more welcoming!) place for our children to grow up in, free of discrimination, prejudice and hatred that is well-documented throughout history towards people with intellectual disabilities. While that sounds like a tall order, I would also like to say that we are also quite prepared take on people like you who would belittle and ridicule our efforts. And just so you know, there is nothing dubious about the offensiveness of the word retard. It IS offensive. So, Anonymous, what are YOU doing to make the world a better place?"

"I am all for free speech, but it ends when you mock a defenseless human being. The "R" word does just that, despite the defenses people throw at you for it's use. A word of advice to you people that use it, educate yourselves, then step back & think how you would feel being on the receiving end. Then find a cause & start helping & supporting people that are of different needs than yours. It feels really good!"

"YES!!!Finally a great coverage on this subject of the R-word being used in movies, TV series in productions. I have a son with Down syndrome who is totally devastated every time he sees or hears the use of the R-word in a movie he's spent his hard earned money on. When we see a theater showing a movie which uses the R-word in it he asks me to go meet with the manager of the theater so he can tell them not to show that movie. He's passionate about getting writers, producers, actors to listen to the pain and suffering they cause by the use of it in their productions just so they can have monetary gain to add to their millions they already have. Our children with disabilities and low income spend a fortune on movies, music, and numerous hours in front of the TV because they have no other escape since many of them don't drive or have friends who pick them up and take them out. It isn't just Hollywood that feels it's OK to use such hurtful word in their productions believe it or not even the closest family members like fathers or mothers or siblings etc make excuses when they hear the R-word used. Stop making excuses people!! Our lives are difficult enough raising our disabled children with self esteem, confidence, and happy why should you make it harder for us by tearing them down with the use of such cruel word. It's damaging so stop it already!"

Dear Readers-- those are your words and thoughts.  You have spoken and so we move forward.  I have been gathering a wonderful resource list of movies, shows, books and even songs that use the R-word and will be posting it in the near future. If you would like to add anything, please email it to me or leave it in the comments.  

In the meantime, here is part of the very personal reason I am so passionate against the use of the R-word in pop culture and society.  

In 2010 we were pregnant and found out at 13 weeks into the pregnancy that our son had a septated cystic hygroma, hydrops (ie: fluid) around his heart and body and approximately a 2% chance of surviving.  We then found out about a week later that he also had an extra 21st chromosome-- also known as Down syndrome.

Throughout the pregnancy we later learned that he had a large hole in his heart that would need surgically repaired.   In the last trimester he developed ascites (a fluid build up) on his abdomen.  His birth was a miracle for our family. 

During his first year of life, Joey wore a helmet to correct a flat spot on his skull.

When he was 9-months old he survived open heart surgery.

He is an incredible little boy who brings joy and delight to everyone who meets him.  

Every single day he works harder than the day before to do the things that you and I might take for granted like eating, drinking, crawling, talking and hopefully one day walking without gait-trainers. 

During our pregnancy and now through Joey's life, I have learned that that R-word is commonly used to describe people who might be considered intellectually slow or not as intelligent as other people.  We have also learned that it is a word that many people use to describe individuals who happened to be born with an extra chromosome and have Down syndrome.  Through every struggle and milestone our son faces, I take more seriously the use of the R-word because of the amazing spirit and attitude our son has towards life.  I dread the day when he is old enough to realize that when some people use the word "retarded", they are possibly talking about him. 

Because of him, I now know how hurtful the R-word can be.  Because of him, I have learned that he is in no way retarded. He might learn to do things slower than his "typical" friends and peers.  He might start crawling and walking at an older age.  

But his heart is the size of the sun and his spirit the size of the universe.  

This baby boy is in no single way what some elements of our society consider a "retard". 

Because of him, I am passionate about educating and spreading awareness about Down syndrome and about the use of the R-word.

Because of him, I am working on becoming better person, mom, wife and friend.

Who makes you a better person?  Would you do anything for them?  

Please join us today to help celebrate and pledge to Spread the Word to End the Word