Cowgirl Up!

Actors With Down Syndrome Featured in "Entertainment Weekly"

2012-02-26T17:19:00.001-05:00

He is probably one of the most popular Oscar hosts.

We definitely enjoy Billy Crystal and his humor on Oscar night. But that's not why I rushed out to buy this week's issue of Entertainment Weekly.

This is why I went to four different stores to find it...

And, wow. It did not disappoint! Kudos to writer, Lynette Rice who wrote an outstanding and insightful article.

Lauren Potter

The article highlights many actors who have Down syndrome, but focuses on Jamie Brewer, Lauren Potter, Chris Burke and Luke Zimmerman.

Lauren Potter's mom, Robin, is quoted as saying, "I think back 21 years ago, when the doctor told me my baby had Down syndrome. There was a little mourning period inside me. No ballet, no proms, no weddings. I'll never sit with her while she's delivering a baby. But she's gone to every prom. She's danced since she was 3. She's on a hit TV show. She speaks in front of people all around the country. She's far surpassed any dreams. They're different dreams, but they're amazing dreams."

While Potter discusses playing a high school cheerleader on Glee, she says her experiences growing up and attending public schools were far different at home. "The typical kids would pick on me, like, 'What does she have, Down syndrome?'" recalls Potter; her eyes tearing up at the memory. "At my old school, they pushed me and made me eat sand. I was bruised, beat down and they make me eat sand. I was little back then."

It's hard to read about this and yet I look at these amazing actors and am so grateful both of my boys will see role models with Down syndrome on television.

Jamie Brewer

Luke Zimmerman

Chris Burke

One of my favorite lines from the article was, "In a time when color-blind casting is no longer a new concept, Brewer and her peers want the chance to audition for any role Hollywood has to offer."

It's an incredibly well-written 7-page article devoted totally to actors who have Down syndrome that provides both touching insights as well as the realistic challenges that these actors face. It highlights their accomplishments (Lauren Potter is serving on the Committee for People With Intellectual Disabilities for the White House, Jamie Brewer is a motivational speaker within the DS community, Luke Zimmerman volunteers at a local courthouse and Chris Burke serves as a goodwill ambassador for the National Down Syndrome Society) and showcases their various roles in popular shows.

What a powerful and wonderful showcase of these actors. Not only are they hard at work doing what they love the most, but they are also each advocates for themselves and everyone else who has Down syndrome. They are showing the world people who happen to have an extra chromosome are more like everyone else than they are different.

Have you bought your copy of Entertainment Weekly? I hope so! My next email is to thank them for their insightful, respectful and awesome article on Actors With Down Syndrome.

I am now going to be a proud Entertainment Weekly subscriber.

An Amelia Update

2012-02-22T15:05:00.003-05:00

Sometimes I write and I think that perhaps I am the only person out there reading what I've put down. That is why your comments and emails are so encouraging. I also love it when people come up to me and say they read the blog. Because of Joey's extra chromosome we have met so many amazing people and we have learned so much. He has made us better parents, better humans-- better people. Some people say, "The blog must be such good therapy for you." I guess I never thought of it that way. I just love to write and to research and so the blog seemed to be a good fit. Since having Joey I have also become passionate about spreading information and awareness about Down syndrome. Joey's life has taught us so much about life and living that I hope his struggles as well as his triumphs can help inspire others.

Speaking of inspiring others, one of my friends asked the other day, "What happened to Amelia?" You may remember, back in January, a little girl who has Wolf-Hirschhorn was denied a kidney transplant partially in part because she was considered "mentally retarded."

I am so excited to tell you that CHOP apologized to Amelia and her family. Here is the whole story as reported by News Medical.

By Dr Ananya Mandal, MD

Children's Hospital of Philadelphia has issued an apology to the parents of Amelia Rivera, a disabled three-year-old girl who, according to her parents, was initially denied a chance at a kidney transplant because she is “mentally retarded.”

In a statement released jointly with Joe and Chrissy Rivera today, a hospital official also promised to review the way the hospital handles such cases. And Amelia's possible transplant is now under consideration, as her parents have previously reported.

Amelia has a genetic disorder called Wolf-Hirschhorn syndrome. It causes intellectual delays, seizures and other health problems - and in her case has led to a kidney condition that could kill her in six months to a year, her parents say. They say they hope to find a family member or other living volunteer to donate the organ.

Michael Apkon, senior vice president and chief medical officer said, “As an organization, we regret that we communicated in a manner that did not clearly reflect our policies or intent and apologize for the Riveras' experience.” He added, “While we can unequivocally state that we do not disqualify transplant patients on the basis of intellectual ability... this event underscores the importance of our responsibility to effectively communicate with families.”

This is the first direct statement the hospital has made about the case, which became an online cause for tens of thousands of people after Chrissy Rivera blogged about a meeting with a doctor and social worker there. She wrote that the doctor came to the meeting with the words “mentally retarded” and “brain damage” highlighted on two pieces of paper and insisted that Amelia's mental delays made her ineligible for a transplant.

In today's statement, the Riveras say, “Despite an unfortunate encounter a few weeks ago, we hold The Children's Hospital of Philadelphia in high regard. We've had a three year relationship with the hospital and are pleased with the care that Amelia has received.” If their daughter can be “seen as Amelia, and not as a diagnosis of her mental abilities” it may help other families, they say.

The Riveras

The hospital said that no decision had been made on whether the surgery would be performed. “We are completely committed to the careful review of our processes and written material to ensure that we are sensitive to the needs of all families,” Apkon continued, “including the specific needs of families of children with disabilities.”

Sending prayers and love to Amelia on this first day of Lent.

Happy Wednesday!

Learning to Walk

2012-02-20T20:37:00.000-05:00

I can't believe he will be 18 months in just a few days. He has become a master army crawler. Maybe he will get up on all fours and crawl someday? We hope so, but if not, he has started to learn to explore his world in his own way. In a quick way! If one of us walks out of the kitchen into the laundry room you will soon see Joey's little blonde head poking around the corner.

He spends an inordinate amount of time wearing socks, shoes and no pants to help him with sensory input and traction.

Oh yeah, baby!!! Who needs pants when you are this cute?

In addition to learning to crawl we are also working on learning how to stand and eventually how to walk.

The first year of his life I worried about milestones and measurements. For one reason or another, those aren't such a huge concern anymore. We know that eventually Joey will walk. We know that one day he will say "mama" and not giggle at me every time I try to get him to say it. Not unlike "island time", he is on "Joey time". And that's okay, because every minute of it is more beautiful than the last.

What are you learning to do?

Mommy and Tommy's weekly Starbuck's date.

Love that Joey is holding onto a picture of his brother.

This was the scene at Target the other night....

The Hypocrisy of the 2012 Oscars - The F-Word Is Not Acceptable, But The R-Word Is

2012-02-15T09:37:00.002-05:00

This is a cross- post to our other blog- The R-Word Reporter.

Brett Ratner, known for directing X-Men and Tower Heist was originally slotted for the position as the producer of the 2012 Academy Awards. In November 2011, while screening his film Tower Heist, a member of the audience asked him what the rehearsals were like for the film. Ratner replied, "Rehearsal? What's that? Rehearsal's for f*gs. Rehearsal. Not much. A lot of prep, preparation, complex action sequences, visual effects."

GLAAD quickly condemned the statement and following meetings with GLAAD and community outrage, Ratner abruptly resigned as the producer of the 2012 Oscars. GLAAD went on to say, "Hollywood has the power and responsibility to grow acceptance of all communities," said GLAAD Acting President Mike Thompson. "We look forward to working with Ratner and the industry in promoting positive, culture-changing images of our community and sending a message that such slurs, used to belittle gay and lesbian youth and adults every day, have no place in mainstream popular culture or the industry that creates it."

Ratner released a statement saying, “I apologize for any offense my remarks caused. It was a dumb and outdated way of expressing myself. Everyone who knows me knows that I don’t have a prejudiced bone in my body. But as a storyteller I should have been much more thoughtful about the power of language and my choice of words."

Academy President, Tom Sherak responded with this statement, "He did the right thing for the Academy and for himself. Words have meaning, and they have consequences. Brett is a good person, but his comments were unacceptable. We all hope this will be an opportunity to raise awareness about the harm that is caused by reckless and insensitive remarks, regardless of the intent."

Here is where I start to have some issues with the Academy. Sometimes people slip up and say words. They say words that they didn't mean to say. Mean words. Words that as Tom Sherak says, 'have meaning...and...consequences." In this case, Ratner used the f*g word. It was not a rehearsed moment. He answered a question and used a cruel word in his response. Do I think the f*g word is disgusting-- completely. I think that like the R-word, it is cruel, demeaning and never used in a kind or gentle manner.

But what about when such hateful and cruel words are in films? Words that hurt millions of people who suffer from some kind of disability. Words that have been purposefully placed in a movie and that are kept in a movie. Words that have been rehearsed. Words that someone wrote, someone directed and someone said.

What I have a major problem reconciling is the purposeful use of such slurs in movies. My issue is this. Movies first have to be written. Sometimes they are a book in their first form, like The Descendants by Kaui Hart Hemmings. Then there is a screenplay. Then there is a director. Then there are actors. All along the way, each cog in this machine reviews, reads, analyzes and finalizes the words of the screenplay that are then used to create the movie. Finally, even after all of these people have finalized a movie, it still has to go in front of the Motion Picture Association of America to assign the film a rating.

This year the 84the Academy Awards have bestowed a number of nominations on not one, but two movies that have purposefully used a disability slur. Not a gay slur like Brett Ratner used, but a disability slur. Yep-- the R-word. Retarded.

The Descendants (which I scathingly reviewed here) earned 5 Oscar nominations (including one for Writing/Adapted Screenplay and Best Picture). Extremely Loud and Incredibly Close earned 2 Oscar nominations (including one for Best Picture).

Here is a summary of the scene in The Descendants-- (as a disclaimer-- I tried to memorize the scene as best I could and am also including this segment from the novel) as I first described it back in November:

I really enjoy George Clooney. It's actually a touching and powerful movie. I was shocked when in the middle of it, George Clooney's character, Matt King says to Nick Krause's character, Sid something to the effect of (I'm paraphrasing because I can't remember word for word) "You are so retarded."

I looked at my husband. He looked at me. He knows how I feel about this. Would I be able to make it through this movie?

That's when the character Sid replies, "That's not nice. I have a retarded brother."

Matt looks shocked.

I was shocked. My husband and I looked at each other again. Could this be a teaching point? A lesson in the middle of this movie? No such luck.

Sid goes on to say, "I'm just kidding. I don't have a retarded brother. Sometimes when old people and retarded people are slow I just want to make them hurry up......"

Here are the actual lines from the book The Descendants:

"Stop it," I yell. "Stop touching each other."
"Whoa," Sid says. "Maybe that's why your wife cheated on you if you're so against touching."
I snap my head around to face him. "Do you get hit a lot?"
He shrugs, "I've had my share."
I face my daughter, "You know you're dating a complete retard. You know that, don't you?"
"My brother's retarded, man." Sid says. "Don't use it in a derogatory way."
"Oh." I don't say anything more hoping he'll interpret my silence as an apology.
"Psych," he says and now kicks the back of my seat. "I don't have a retarded brother!" His little trick is giving him a great amount of amusement. "Speaking of the retarded," he says, "do you ever feel bad for wishing a retarded person or an old person or a disabled person would hurry up? Sometimes I wait for them to cross the street and I'm like, 'Come on already!' but then I feel bad.

In Extremely Loud and Incredibly Close there is a point where the young boy who plays the main character, Oskar Schell, explains that he has been tested for and possibly has Asperger's. For this reason alone I really didn't expect to hear the R-word used in this Oscar nominated film. In the scene it is used in, Oskar Schell, played by Thomas Horn, is arriving back at the New York City apartment he lives in with his parents. He goes to use the stairs and Stan the Doorman, played by John Goodman says (as best as I can remember), "The elevator works, genius." To which, Oskar replies, "I know, retard."

Really? Again? This is literally the fifth movie in the past six months that I have seen in the movie theater that uses the R-word. The Change Up, Larry Crowne and Friends With Benefits also all use the R-word in them. Where is the Academy now? Why isn't the Academy president Tom Sherak using those same words he used when Brett Ratner said the word f*g? Why isn't Tom Sherak saying, "Words have meaning, and they have consequences. . .We all hope this will be an opportunity to raise awareness about the harm that is caused by reckless and insensitive remarks, regardless of the intent"?

And as Brett Ratner said, "But as a storyteller I should have been much more thoughtful about the power of language and my choice of words."

Where is the opportunity to raise awareness about the harmful and hurtful effects of using disability slurs against innocent individuals who happen to have some kind of disability? I guess as far as the Academy of Motion Pictures is concerned, disability slurs don't have consequences only gay slurs do.

What if that scene in The Descendants used the f*g word (a word that I also think is deplorable and hateful) instead of "retard"? What if the scene that was in the movie was this:

"Stop it," I yell. "Stop touching each other."
"Whoa," Sid says. "Maybe that's why your wife cheated on you if you're so against touching."
I snap my head around to face him. "Do you get hit a lot?"
He shrugs, "I've had my share."
I face my daughter, "You know you're dating a complete f*g. You know that, don't you?"
"My brother's a f*g, man." Sid says. "Don't use it in a derogatory way."
"Oh." I don't say anything more hoping he'll interpret my silence as an apology.
"Psych," he says and now kicks the back of my seat. "I don't have a fa**ot brother!" His little trick is giving him a great amount of amusement. "Speaking of f*gs," he says, "do you ever feel bad for wishing a f*g or an old person or a disabled person would hurry up? Sometimes I wait for them to cross the street and I'm like, 'Come on already!' but then I feel bad.

I wonder how the Academy would feel about that. Would the movie have still received 5 nominations including one for Writing and one for Best Picture?

And what if the scene in Extremely Loud and Incredibly Close went like this:

"The elevator works, genius." To which, Oskar replies, "I know, f*g."

It just makes me wonder. The Academy has gone to an extreme length to publicly show that it does not support the use of a gay slur. Why can't they recognize that disability slurs are just as hurtful?

You may ask--why does it even matter. It matters because every single movie we go to I sit with baited breath and wonder if there will be a disability slur. Will someone in the movie call someone else a "retard" or use some version of that word? I worry for the other people in the theater. We were at a movie a couple of weeks ago and behind us was a family. In that family was a woman who was about in her mid-50's who had Down syndrome. I spent the entire movie worrying that the R-word would be in it and that she would hear it. The movie, Contraband ended up not using the R-word in it and it was a fast-paced and enjoyable thriller and I was able to finally exhale when we walked out.

I've said this before, but as an attorney I completely understand the right to free speech. As Tim Shriver so eloquently appealed to Stephen Colbert and his viewers, "You're allowed to be humiliating, degrading and hurtful. I'm allowed to petition you to at least recognize what you say and be aware of the option you have to stop."

My Funny Valentine's....

2012-02-14T08:27:00.000-05:00

Oh these boys. They just make my heart melt. At Tommy's pre-school party the teacher asked everyone who their favorite Valentine friend was. My husband whispered to Tommy, "Say Mommy." Our "no" boy, said, "Nope. My favorite Valentine is Joey." That was about a million times better to hear.

Have you said I love you to your Valentine, yet?

Oh my....this one steals my heart. Thank you, LoLo for this beautiful photo!

Our Valentine's for our friends at school, teachers and therapists we see this week. We got this awesome idea from Pinterest and from the Fry Family Blog. Thanks for the fun idea!!!

Any Doubts? Blondes Definitely Have More Fun

2012-02-13T08:33:00.003-05:00

Meet Finnegan. He is a Wheaton Terrier Golden Retriever mix. He was as his loving owner, Maureen, says with a smile on her face, a "mistake" according to the people she bought him from.

Isn't it funny what as humans we think are mistakes are sometimes the most beautiful things in the world?

Having Down syndrome is considered a "genetic abnormality". To some people it is a genetic mistake.

Makes me think a little differently about "perfection" versus "mistakes". As far as I can tell Finn and Joey are about as perfect as possible.

Have you ever made or had a mistake that ended up being something more perfect than you could have ever wished for?

Snow Day - Stonz Booties Winner!!!

2012-02-11T15:13:00.000-05:00

Ironically it is the perfect day to be giving away a pair of Stonz Booties!

Thank you so much to everyone who shared a comment.

Tommy was our official name drawer and the winner of the Stonz Booties is....

Love My 3

Congratulations!!! Love My 3-- please email me and I will put you into contact with our friends at Stonz Booties for your item!!!

Also- this month if you "like" Stonz Booties on Facebook, they will donate a piece of outerwear to charity.

Happy Snow Day!

Why Living In Akron Is Cool -Last Two Days for Stonz Booties Giveaway!

2012-02-09T21:23:00.003-05:00

We could hear the gentle, but unmistakable whirring sound before we stepped out of our front door. We had spotted it earlier while we were in the parking lot at Starbucks. But this was much cooler...

Where else in the world can you live and get to see this on a random Thursday? Where you don't have to be at an NFL game or some other major sporting event? Akron, Ohio, baby!

I grabbed Joey in one arm, the camera in the other and yelled for Tommy to run outside, but he had already beat us there.

Found this-- had to hang it in our kitchen. Hope the boys will follow as best as possible.

Last 2 Days for the Stonz Booties Giveaway!!

Every reader who leaves a comment on the blog from today through February 10 will be entered into a random drawing. Every comment counts as one entry. The winner will receive a pair of Stonz Booties, which Stonz Booties has graciously donated!

A Place of No - Last Week for Stonz Booties Giveaway

2012-02-07T22:37:00.001-05:00

A couple of months ago I came to the conclusion that my husband was a "no" guy. You know. He starts from what I call "A Place of No" in which his immediate response to any request/question/inquiry is most often answered with "no." Don't get me wrong. This is actually a trait that I completely admire. He is the Yin to my Yang. I'm a "yes" girl. It actually causes me some degree of physical pain to say no. Whether it is to joining a committee, taking on a new job, making plans or anything mundane or even anything life-altering, I have a really, really hard time saying no.

My husband, and now, I've noticed, our oldest son, Tommy are our resident "no" experts. A typical conversation goes, "Tommy, do you want to go to school today?" His response, "no." "Tommy, do you want to have a chocolate chip cookie?" His response, "no." And on, and on, and on. Maybe Joey will be our "yes" kid. We will see. So far this is a man's world at our house (I just live in their world) where Joey's only decipherable word is still DaDa.

My other observation about people who come from a "A Place of No" is that they readily admit it. Test this out. Ask a group of people whether they come from a place of no or a place of yes. The "no" group, in my brief and non-scientific survey, seem to be much more able to admit that they come from a place of no, whereas the "yes" people tend not to be so decisive in identifying themselves in either group. Hmmm....maybe the "yes" people are also the pleasers. Maybe the "no" people are the leaders. The strong ones. Oh, how I admire their ability to say no and move on.

Where do you come from? A place of no? A place of yes?

Mom! No more photos!

Nope.

Maybe it's not that he's a "no" kid, but one that is over-photographed?

NO!!!!

The full 2-hand coverage. Look at those sweet cousins.

When he does smile it is a killer....

This is the last week for the Stonz Booties Giveaway!!

Every reader who leaves a comment on the blog from today through February 10 will be entered into a random drawing. Every comment counts as one entry. The winner will receive a pair of Stonz Booties, which Stonz Booties has graciously donated!

Fun Fine Motor Skills - Last Week For Stonz Booties Giveaway

2012-02-06T15:02:00.000-05:00

Our Occupational Therapist from Help Me Grow had some wonderful and creative ideas for developing fine motor skills.

This one involved putting food into mini muffin tins so that Joey has to use his "pincer" grip to grab the food out. We used bananas, but cheerios or really any food about the size of a dime or a penny would work.

I will say-- it helped when one of us held the muffin tin down so that Joey couldn't dump the whole thing out, which was wonderful problem solving, but we are trying to work on Fine Motor skills.

This is the last week for the Stonz Booties Giveaway!!

Every reader who leaves a comment on the blog from today through February 10 will be entered into a random drawing. Every comment counts as one entry. The winner will receive a pair of Stonz Booties, which Stonz Booties has graciously donated!

Happy Monday!

Our Favorite Super Bowl Commercial - 2012 - Cadillac "Green Hell"

2012-02-04T08:46:00.001-05:00

The Life That Is Waiting For Us

2012-02-03T00:01:00.000-05:00

From here.

One of the most amazing things that Joey has taught us is that we may think we make plans and we may think that we have any kind of "control" over what life will bring us, but that is just not the case. Thank goodness! Having a son who has an extra chromosome has brought us more joy, more laughter, more appreciation, more compassion, more empathy-- more of everything all wrapped up in that extra 21st chromosome. What is the life that is waiting for you?

Love. Joy. Brothers. One sock missing.

Bravery

Pure joy.

Laughter

Patiently waiting for Joey's appointment.

Trying new things- the Honey Bear Cup

Wayne Homes Chili Open - 2012 - Cowgirl Up! Winner

2012-02-02T22:44:00.000-05:00

On Saturday, February 4, 2012, nearly 1,000 polar bear golfers will converge on the scenic Hale Farm and Village in Bath, Ohio for an arctic golf experience at the Wayne Homes Chili Open. On that date, the grounds of Hale Farm will be transformed into seven golf courses with nine holes on each course. Golfers will be challenged to drive shots across tundra and putt balls laden with ice. There will be awards for closest-to-the pin and hole-in-one.

The best part about participating in the 2012 Wayne Homes Chili Open Golf Classic is that you will help more than 1,600 children and adults with disabilities attend the Rotary camp next summer!

We've been holding a contest to give away a complimentary foursome to golf in the Chili Open and drew our winner. . .

Courtney!!!!

Your name was drawn and if you would like to register a foursome for Saturday's event, please send me an email and I will connect you with Bill Manby.

Good luck and have fun Arctic Golfers!!!

Fore!

There is still time to be entered into our Stonz Booties contest. Any comments up until next Friday, February 10th will enter you once for each comment for a pair of complimentary Stonz Booties!!

Just some fun birthday photos. Note the look on Tommy's face...he is our "place of no" child. More on my "place of no" theory to come. Also note the "Flair" oven behind my husband's head. It is our rocking 1960's super fabulous oven. I love it.

Splish Splash - Taking A Bath

2012-01-31T23:38:00.001-05:00

One of the most common challenges people who have Down syndrome face is something called hypotonia. According to the National Down Syndrome Society, it is reduced muscle tone that occurs in virtually all infants with Down syndrome. The NDSS goes on to explain that the muscle weakness can range from mild to moderate to severe and that common hypotonic symptoms include a lagging head when the child is sitting and an arching back when being carried or lying on their stomach. Hyptonic children will also tire more easily and will adopt movement patterns that require the least expenditure of energy.

The crazy thing about Joey is that physically he seems very strong. However, despite seeming so strong, he has pretty severe hypotonia. Sometimes it is hard to see similarly aged children who have Down syndrome who are already crawling, pulling themselves up and some are even walking. I work really, really hard on not comparing Joey to where Tommy was at his age, where my friends' kids are at his age or even where other kids who have Down syndrome are at his age. It's unfair to him, to us and to everyone else. Instead, we buckle down and keep working hard at every little victory and milestone. I think the reason it makes me sad sometimes is because I want him to feel that independence of exploring and pulling up on things. I want him to see the world from the standing position because his nystagmus makes his little eyes jitter like crazy when he is trying to crawl and see.

One of the challenges with the low muscle tone has been bath time. Bath time should be fun! We want him to be able to explore his world, work his muscles in all different directions and enjoy himself. In the process of trying to make his bath time more enjoyable we are trying out some different options. Here is Option One-- The Dream Baby Seat. This one is awesome because Joey is sitting up and his eyes are steady and he can't aspirate any water. It makes bathing pretty easy, but it's still kind of tough to get everything washed up. It does make washing his hair really easy and he is a big fan!

Option 2 is one we borrowed from a friend. It's by Swimava and is really cool, but it's a little bit small, so we've also purchased one from Water Way Babies. We also purchased a "pool" from Water Way Babies and are going to be trying that out this week. For now we've been using the swim collar from Swimava in the tub. He really likes being able to wiggle around, but with the swim collar it is tough to keep him from aspirating water in the tub. Somehow he manages to get water caught up around his neck and then he ends up swallowing and choking on it. We are working on perfecting the swim collar usage.

Bro-- what is going on here?

Up on my knees!

Mom-- stop torturing Joey!

Two Awesome Giveaways!!!

Any comments up until Friday, February 10, 2012 will be entered in our giveaway of a pair of awesome Stonz Booties.

This week we are also giving a way a Foursome to the Wayne Homes Chili Open, which benefits the Akron Rotary Camp for children with special needs.

The Rules

1) To be entered to win a pair of Stonz Booties, just leave a comment anytime today through Friday, February 10, 2012. Every comment is an entry.

2) To be entered to win a Foursome for the Arctic Golf at the 2012 Wayne Homes Chili Open, leave a comment anytime before this Thursday, February 2nd about your favorite summer camp experience or about whether or not you'll send your kids to summer camp. That winner will be announced on Thursday.

Good luck!!!!

Stonz Booties - Cowgirl Up! Giveaway

2012-01-30T20:36:00.000-05:00

If you have visited us at Cowgirl Up! before, you may have noticed we've had a bit of a "makeover". In celebration of the new look, I am super, super excited to announce that we are going to be having a Stonz Booties Giveaway!!! Stonz has been kind enough to provide one free pair of Stonz Booties to a lucky Cowgirl Up! reader.

Every reader who leaves a comment on the blog from today through February 10 will be entered into a random drawing. Every comment counts as one entry. The winner will receive a pair of Stonz Booties!

Stonz booties are made in Canada and they were created by a mom, Lisa, who's favorite quote is "There is no such thing as bad weather; only inappropriate clothing."

Not only do they offer awesome booties, but they also have liners, mittens and hats.

Visit Stonz on Facebook.

Right now they are also offering one free hat of your choice when you buy any two items.

We hope you enjoy the new look of Cowgirl Up! and best of luck to all the awesome readers in the hopes that you will win a fabulous pair of Stonz booties!

This week we are also giving a way a Foursome to the Wayne Homes Chili Open, which benefits the Akron Rotary Camp for children with special needs.

The Rules

1) To be entered to win a pair of Stonz Booties, just leave a comment anytime today through Friday, February 10, 2012. Every comment is an entry.

2) To be entered to win a Foursome for the Arctic Golf at the 2012 Wayne Homes Chili Open, leave a comment anytime before this Thursday, February 2nd about your favorite summer camp experience or about whether or not you'll send your kids to summer camp. That winner will be announced on Thursday.

Good luck!!!!

Change, Giveaways and A New Blog- The R-Word Reporter

2012-01-27T14:17:00.000-05:00

Change
Change is good! Change is hard. For almost one year Cowgirl Up! has been in existence and I got a little hitch in my giddy up because I decided we needed a new look. I find change really, really hard, but I'm also really, really decisive and once something is decided, well, that's it. So here we are! After emails going back and forth and back and forth for a few weeks, we finally settled on the new look. Little Blue Deer was amazing to work with and I'm so, so excited for our Cowgirl Up! makeover.

Giveaways
In honor of the new look of Cowgirl Up! I am having not one, but TWO awesome giveaways over the next two weeks!

The first giveaway is a foursome to the 2012 Wayne Homes Chili Open Golf Classic on Saturday, February 4, 2012. The Chili Open raises funds so children with special needs can go to the Rotary Club of Akron's summer camp. To be entered, just leave a comment with your favorite summer camp or summer memory. A random winner will be drawn on Thursday, February 2nd!

The second giveaway will be announced on Monday, January 30th. I will give one hint.

A New Blog: The R-Word Reporter
Finally! In the past year I have started to really notice the use of the R-word in movies and television shows. I get especially upset when my husband and I have paid for a movie ticket and the movie is ruined when I hear it used. I can't help it. I'm not very understanding of the use of the R-word in a film. In an effort to help provide accurate and fair reporting of such instances and in an effort to help petition the world to recognize what they say and that they have the option to stop saying it, I just launched The R-Word Reporter.

A Week in Instagram
Have a wonderful weekend!!!

A Chance To Go To Summer Camp

2012-01-26T23:16:00.003-05:00

Did you ever go to summer camp as a kid? Swim in a lake during the day. Share a bunk with new and old friends. Explore the woods. Make s'mores and tell stories around a big campfire. I'm literally singing "Summer Lovin'" in my head right at this moment just thinking about all the fun that occurs at summer camp.

When you have a child who is born with a disability, you sometimes wonder if your baby will ever have those kinds of memories. Will they ever have the chance to escape to the woods and create lasting summer memories and friendships? Will there be people who can both help them with any medical equipment or needs and yet also help them fit in despite any obstacles?

Fortunately, for both Joey and us, we have an incredible Rotary Camp for Children with Special Needs right here in Akron, Ohio.

What does Extreme Arctic Golf have to do with summer camp? Everything!

On Saturday, February 4, 2012, nearly 1,000 polar bear golfers will converge on the scenic Hale Farm and Village in Bath, Ohio for an arctic golf experience at the Wayne Homes Chili Open. On that date, the grounds of Hale Farm will be transformed into seven golf courses with nine holes on each course. Golfers will be challenged to drive shots across tundra and putt balls laden with ice. There will be awards for closest-to-the pin and hole-in-one.

The best part about participating in the 2012 Wayne Homes Chili Open Golf Classic is that you will help more than 1,600 children and adults with disabilities attend the Rotary camp next summer!

Let me repeat that--1600 campers with special needs will be sponsored by the Rotary Club of Akron to attend camp in the summer of 2012. That's a lot of happy campers!

For more than 88 years, the Rotary Club of Akron has sponsored the Rotary camp. Children with special needs throughout Ohio have been invited to spend a week at camp where they enjoy many traditional activities including swimming, canoeing, arts and crafts, sports and games, team building and more in a convenient and natural setting. When campers leave Rotary camp at the end of each session, they not only leave with lifelong memories and friends, but they often show more independence as well as a greater understanding of themselves and their abilities. For more information about the Akron Rotary Camp, please call the camp office at 330.644.4512.

If you would like to donate to the 2012 Wayne Homes Chili Open Golf Classic, click here.

If you would like to register a foursome for the 2012 Wayne Homes Chili Open Golf Classic, click here

FOURSOME GIVEAWAY
If you would like to be entered for a chance for a FREE FOURSOME for the 2012 Wayne Homes Chili Open Golf Classic, leave a comment with your favorite summer camp or summer memory. A random winner will be drawn on Thursday, February 2nd!

Thank you Rotary Club of Akron for making summer camp a dream come true to so many!

Good Luck!!!!

A Smile As Big As The Moon - Sunday, January 29, 2012 9/8c

2012-01-26T22:23:00.000-05:00

This Sunday, January 29, 2012, Hallmark Hall of Fame will present A Smile As Big As The Moon on ABC at 9/8c. John Corbett (LOVED him as Aidan on Sex and the City) plays Mike Kersjes, a Michigan high school football coach and special-education teacher, who helps his special-ed students achieve their seemingly impossible dream--to attend Space Camp at the U.S. Space & Rocket Center in Huntsville, Alabama. Their journey, which is based on a true story, is the basis for A Smile as Big as the Moon.

What is especially wonderful about this movie is that many of the special-ed students are played by actors who have real special needs including Down syndrome, ADD, autism, dyslexia and Tourrette's syndrome.

John Corbett and Peter ten Brink

From MIB: Make it Better

Peter ten Brink has been a fixture on the North Shore theater scene since he began acting at age 8.

But now, a national audience will get to know the New Trier High School teen when he appears in the Hallmark Hall of Fame movie “A Smile as Big as the Moon,” airing Jan. 29 on ABC.

Ten Brink plays Ben Schmidt, a high school student with Down syndrome who dreams of someday becoming an astronaut. His teacher, Mike Kersjes (played by John Corbett of "Sex and the City" and "My Big Fat Greek Wedding" fame) is inspired by Ben’s dreams to try to get his class of special education students accepted into NASA’s Space Camp. The movie is based on a true-life account by Kersjes, who wrote a memoir of the same name.

The role came to ten Brink’s attention through the Down Syndrome Association of Los Angeles, which keeps a file of actors with Down syndrome. After finding out he was up for consideration, he took a whirlwind trip to North Carolina around Labor Day to audition. He got the call offering him the part, ten Brink said, while at McDonald’s “waiting for my Chicken Selects.”

“Ben Schmidt had Down syndrome like me. The character wants to go to Space Camp … but Space Camp is really for gifted children, not special needs,” ten Brink said. The story follows the struggles and triumphs of the class as they work toward their goal against all odds.

Ten Brink previously played the lead role in the independent short film “By Any Other Name” and also has a part in the upcoming feature length project “Nightlights,” both by Play On Productions. He got his start acting with Special Gifts Theatre, a Northbrook-based company that features actors with special needs.

He began working with New Trier’s Theatre program while he was still in junior high, landing a role in the school’s production of “The Music Man,” and has participated in New Trier Theatre classes throughout high school.

“Peter ten Brink has been very involved in our Theatre Workshop and Theatre 2: Acting courses,” said New Trier Performing Arts Coordinator Anne James-Noonan. “He is passionate about acting and has been an enthusiastic scene partner to many of our New Trier Theatre students.”

New Trier Theatre teacher Hilerre Kirsch said she has enjoyed ten Brink’s contributions to her classes.

“Peter’s passion for theatre was evident the first time I met him!” Kirsch said. “He was clearly serious about his acting and became a leader in his classes, offering advice and comments that were appreciated by his classmates.”

We can't wait to make some popcorn and watch this movie as a family on Sunday night!

Our Fragile Emissary

2012-01-24T16:42:00.000-05:00

This was posted on one of our favorite blogs-- With a Little Moxie yesterday and Meriah said it was okay to re-post here. We find inspiration and smiles at With a Little Moxie on most days. Hope you enjoy this beautiful poem as well.

Our Fragile Emissary
by Nancy Tupper Ling

With modern screening and such
they wonder why
you're here, on this earth
in our home
and in our arms,
after all, anyone
with any sense would have resolved
this problem of you
pre-birth, pre-pain.

Blonde beauty,
tiny as you are,
you catch their stares,
strangers' second glances
into tender baby blues.
And our young
sweet ears hear whisperings
("Down's," "defects")
words dropped loosely
at extra-chromosomed girls.

With such stinging receptions,
we long to shelter you,
surround you; keep your
gentle smiles to ourselves.
Instead, we hold you
up, for others to see;
let you, our fragile emissary
speak to an imperfect world.

It reminds me so much of Joey if you changed "words dropped loosely at extra-chromosomed girls" to "boys."

My favorite line is "Instead, we hold you up, for others to see; let you, our fragile emissary speak to an imperfect world." I LOVE this line. It is what we do. What so many, many families do who are out there advocating and educating. We hold our babies and our children up for the world to see that love does not count chromosomes.

Forward Motion - Directed by: Tommy

2012-01-22T23:19:00.003-05:00

I was trying to get Joey's Army crawling on video when Tommy took over. I think he did a much better job. . .

Be warned that if you get motion sick, this might not be the video for you.

My version. . .

A Week In An Instagram - and Stonz Booties

2012-01-21T16:15:00.001-05:00

The little booties that Joey has on are called Stonz Booties-- a company out of Canada. His cousin had a pair and they looked so cute I had to get him some. You can wear them over shoes and with or without the liner.

They also have amazing mittens that completely stay on. I bought mittens for both boys.

2 for 2 - Raising Awareness for Down Syndrome

2012-01-19T22:42:00.000-05:00

If you haven't already visited her beautiful blog-- be prepared for a treat of amazing photos and two gorgeous little girls, Nella and Lainey. They greatly remind me of my own two boys, Joey and Tommy. Kelle Hampton's blog-- Enjoying the Small Things was the first place I found a story about having a baby who had Down syndrome. It was only a month or so after finding out that our son, Joey, would be born with an extra chromosome that I stumbled across her posting called: Nella Cordelia: A Birth Story. We were on a family trip to Hilton Head. It was our first trip with just Tom, Tommy and I. Our little family of three plus one in the oven. The diagnosis was still fresh and we were still confused, scared and grieving about finding out our second son had an extra chromosome. I was about 23 weeks pregnant and spent each night searching the internet for hope, words of wisdom and answers.

I remember finding Nella Cordelia: A Birth Story and as I read it, tears streamed down my face as I silently cried and cried and cried. I took the laptop over to my husband and said, "See-- it's going to be okay. We aren't the only ones." I found such comfort in Kelle's post about Nella's birth. I took notes and decided that our baby boy's birth would also be a celebration complete with champagne and favors for all the family and friends who were there.

This year, the Hampton family is trying to help raise $200,000 for the National Down Syndrome Society. Last year they raised over $100,000. "The National Down Syndrome Society has been dedicated to making a marked difference for people with Down syndrome since 1979. The mission of NDSS is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. NDSS envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities."

If you would like to contribute to the 2 for 2 campaign (Joey is also turning 2 this year, so I'm donating in honor of him!), you can visit here.

In the meantime, I just want to thank the Hampton family for helping spread awareness, acceptance and understanding for the thousands of people who read their blog. I am also grateful to them for putting their story out there and for helping me and other families.

Cheers!

What Does a Kidney Transplant Have to do With "Mental Retardation?" Everything.

2012-01-19T00:05:00.000-05:00

Part of becoming a mommy to a son who has an extra chromosome has been learning that many in the medical field consider him to be "mentally retarded". It is not a judgment. It is not a statement of any sort. It is a medical term. As I often discuss on Cowgirl Up!, the phrase "retarded" has become part of society's rhetoric and is often used to describe someone in a derogatory or demeaning manner. To say someone is "retarded" is to say they are slow, not mentally sufficient and intellectually deficient. As I have mentioned over and over it is a cruel word that many of us (myself included) used to use off-handedly to describe ourselves or our actions. We used it and didn't think twice about associating it with Joey or other people who have disabilities. Part of the goal of Cowgirl Up! is to remind people that this word should no longer be socially acceptable. That, similar to "nigger" and "faggot", "retard" is a word that is used only to be cruel and demeaning and should be removed from our every day vernacular.

Another part of being a mommy to a son who has Down syndrome is understanding the medical jargon and learning how to fill out the forms. Most doctor visits, whether to the cardiologist, the opthamologist or the endocrinologist involve filling out some form. A form that asks about Joey's health history. With our first son, Tommy, those forms were a breeze. Tommy was born via c-section (two weeks late!), has no known allergies, no hospitalizations, no surgeries...mostly nothing at all. For Joey's forms it is more complicated and what is just a "formality" often becomes more than that. Depending on the day, it can even get a little emotional. Oftentimes I just want to ask, "Do you really need to know everything?" Because let's be honest, Joey has got a medical record much thicker than any 17-month-old should have. I just start filling in the various blanks. Born at 37 weeks via C-section due to abdominal ascites. Under the bilirubin lights for five days for jaundice. Diagnosed with Nystagmus. Silent aspirator. On honey thickened feeds. Severe hypotonia. ASD repaired at 9 months old via open heart surgery. Leaky Mitral Valve still monitored. Hearing loss (extent unknown). Ear tubes placed at 15 months. Plagiocephaly corrected via cranial device (helmet). Torticollis corrected via therapy.

It's a lot when I look at it all, not as much or as bad as many other children experience and deal with daily, but a lot. And as much as it all is-- I would not change a single thing about any of it. To take anything away would mean changing Joey and he is who he is because of all he has been through and all he goes through to get there.

Once of all those blanks are filled out, you get to the part where you check yes or no to various ailments/medical issues. At this point there is usually a spot on the form where you are supposed to check yes or check no to: Mental Retardation.

That's a tough one for me. I'm usually the crazy/obnoxious mom who crosses the entire phrase out and fills in my own version. Usually it's "Developmentally delayed". I just can't ever bring myself to check Yes to the "Mental Retardation" box. I just can't. Think about it-- could you do it for your own child? I know--it's just a word. But words have connotations and meanings attached to them and that is one word I'm not willing to give on.

Which is what leads me to the entire purpose for this posting. There is a little girl, Amelia. Amelia needs a kidney transplant. Without one, she will probably die in the next 6-12 months.

Her parents plan on someone in their family donating to her. Children's Hospital of Philadelphia (CHOP) have denied her a spot on their transplant waiting list because. . . she is "mentally retarded". Can you even imagine? This is her story here.

It's only mid-January and we have almost hit's Joey's yearly deductible for health insurance. I just got a letter yesterday asking if his medical costs were due to an injury at work. I had to smile. The letter said that they are concerned with decreasing costs and cost containment. Then I read about Amelia. And that's when I became really worried. Then I was scared. Where is our health care going? This is the United States. What if Joey needs a transplant at some point. Will he be denied because a box on a medical form declares that he is "Mentally Retarded?"

Are you angry about Amelia's journey? Are you outraged that CHOP is denying her the right to try and live? If you are-- re-post her story.

You can also go to Change.org and sign the petition.

Here is what Tim Shriver (LOVE TIM SHRIVER!!! Also LOVE Eunice Kennedy Shriver who started Special Olympics) says about this travesty:

Raise Your Voice for Dignity!

Posted on January 18, 2012 by Tim Shriver

Many people have shared with me in recent days the tragic news about a girl named Amelia who was refused a spot on a waiting list at the Children’s Hospital of Philadelphia for a liver transplant because she is “mentally retarded.” When I heard about this, it made my blood boil.

Some have questioned why we in Special Olympics have mounted a campaign to challenge the humiliating use of the word, “retard.” Others have sometimes suggested that Special Olympics has gone beyond its mission in mounting the world’s largest public health campaign to close the disparities and outright bigotry that still infect systems of care delivery for people with intellectual differences. Still others wonder why so many of us speak with such passion about how sport is needed to unleash the power of the human spirit and to attack the vicious discrimination that so often crushes innocent people unjustly.

I say to all of them, open your eyes to the discrimination that goes unchecked all around us and help us stop it now!

If you are a medical professional, raise your voice for dignity now!

If you are a conservative political leader, fight for the dignity of all citizens now!

If you are a liberal political leader, fight for the dignity of all citizens now!

If you are a parent, raise your voice for the dignity of Amelia just as if she were your own now!

If you are a young person, blast the social networks with your commitment to Amelia’s dignity and justice now!

If you are a Special Olympics athlete or family member or coach or volunteer, challenge the status quo and fight for Amelia’s right to play and win the game of life now!

There can be no bystanders at moments like this. Amelia is everyone’s child. If she is denied care, we are all denied our humanity.

This is life and death and that’s not just rhetoric. Please join us in stopping this tragic injustice.

Please join in the fight to preserve dignity. Please fight for Amelia. Please fight for Joey and all the other millions of people who have an intellectual disability.

The Tears of Down Syndrome

2012-01-11T22:58:00.000-05:00

Almost two years ago, when I was about 13 weeks pregnant, we found out that our second son, Joey, had Down syndrome. At the time, Down syndrome was the least of our worries. At only 13 weeks, a septated cystic hygroma (significant pooling of fluid and white blood cells) surrounding Joey's head and neck showed up on an ultrasound. At this time, we were also notified that Joey had hydrops-- excessive fluid all around both his body and his heart. You can see the white line of fluid almost like a halo that goes from the top of his little head all the way to his feet. There were tears.

We were also told there was fluid around his little heart. We were warned that our precious son probably had less than a 2% chance of survival and less than a 1% chance of being "normal" (whatever normal is--still not sure--certainly not me!). We were advised to have a CVS test where they insert a long needle up into the womb and take a tissue sample. Our OBGYN told us not to look at the CVS as a "termination" test because we were hesitant to have the test. He told us instead to think of it as a means of gathering facts so we can be ready to provide whatever health care we needed to for our precious son. There were more tears.

Three days later we learned over the telephone (we had gotten the CVS done a few hours away) that our baby had Down syndrome. There were many, many, many more tears. Tears of grief and tears of worry. Mostly tears related to our fears of the unknown. Would our son survive? Would he ever read? Would he ever talk? Would he ever ride a bike? Drive a car? Go to school? Have friends? Have a girlfriend? Get married? Have a job? The questions and worries were as endless as the tears.

It was a long pregnancy. So many unknowns. So many fears. Trying to offer it all up to God and let our need for control go. So many tears. Getting used to the idea that our baby had Down syndrome. Getting used to saying it out loud. Getting used to telling people our son had Down syndrome. I still remember the fear and ultimately the relief I felt after telling one of my best friend's that Joey had Down syndrome. It was a non-issue to her. Those are the kinds of friends that you cling to.

Those are all the first kinds of Tears of Down Syndrome.

There are others that come along the way. Tears after his nystagmus was diagnosed. Tears after we learned he needed a helmet. Tears before, during and after his heart surgery. Tears when his thyroid levels were off. Tears when he had RSV.

Those kinds of tears follow all children. It's part of being a mom.

The best kinds of Tears of Down Syndrome are the ones we are experiencing now....

Tears of joy. Tears of excitement. Tears of pride. Tears of wonder. Tears of awe.

Just last week during our Help Me Joe (aka Help Me Grow) visit, Joey decided to start Army crawling. And not just with his arms, but with his legs and arms moving in unison bilaterally. Right arm/left leg. Left arm/right leg. And we cried. And those were the sweetest tears to taste. Pure joy. Pure goodness. This little wonder has worked so hard and overcomes every obstacle.

Tonight he did it again. He signed his first word "more". More tears. We have been working on "more" for 16 months now. He has consistently been saying Da Da when he sees my husband, but "more" was a hard fought battle (Ma Ma is proving to be the most difficult word of all...). The most amazing part of it was that he did it unsolicited. I guess that's what kids do. You try to immerse them and bombard them with words and lessons, but it's not until you let them take a breather, drink it in, figure it out, that they are able to show you that they know exactly what you meant.

Joey--the Tears of Down Syndrome are incredible. They are like diamonds. You work so hard for all that you do and your victories are that much sweeter because of it. Thank you for helping us to appreciate every little victory along the way. Please forgive us for ever thinking that your life or existence might somehow be a burden. That you might not be accepted. Please forgive our ignorance and thank you for showing us the light. Thank you for starting our mornings off with your joyous smile and ending our days with your sweet kisses. Being your parents is a privilege that we are blessed with. We are so proud of you.

Photos (other than ultrasound shots) are all by Nat at www.nattakan.com

The "Ginch", Cookie Elf and Christmas 2011

2012-01-10T22:45:00.000-05:00

A Christmas post would have been much more timely, oh, in December. But we've had trees to un-decorate, schedules to figure get back into, presents to play with. You know-- important stuff!

Christmas 2011 will be known to us as the Christmas Thomas Henry learned of the "Ginch" and immediately was distrustful of the green character who steals little kids' Christmas presents. He refused to watch the movie or the cartoon and instead would listen to the song, "You're a Mean One, Mr. Grinch" over and over asking me, "Is that Ginch going to take my presents?" His dad came up with the best answer in that the Ginch lives in Whoville and therefore did not live in Ohio and would not be visiting our town or our home very soon.

Santa used to be on the "distrust" list, but this year slowly creeped into a better standing in Tommy's eyes. Chuck. E. Cheese (or as Tommy calls him "That Big Mouse") remains firmly planted on his do not trust list and I don't completely blame him. For some reason, he is also not a fan of the Fed Ex or UPS delivery people. I think they knock a little too loudly and aggressively for Tommy's taste.

I can only imagine what Tommy is telling Joey....

Christmas 2011 will also be known as the year my baby brother graduated early from college and the fun weekend we spent drinking wine and toasting his collegiate success as well as his future endeavors.

It will be known as the Christmas Joey started to really, really, really try to crawl. He was doing a large swimming motion during most of the holidays and has recently perfected it into an actual "Army Crawl". Go baby, go!

This was the Christmas Cookie Elf entered our lives and gave my husband and I something to giggle about every night. It was all fun and games with Cookie until he was knocked off a fireplace at my parent's house by one of the mini helicopters I gave to all the boys and they all stood there in shocked silence as my nieces and Tommy witnessed Cookie Elf's descent onto the floor. We later learned that an enterprising uncle told them that if he picked up Cookie by his tag, it was not considered "touching" him which would have caused him to lose his magic (read the book if this sounds like witchcraft).

That is Cookie sitting up on the middle of my parent's fireplace and that is
the helicopter in the top of the shot.

2011's holiday season will be remembered by a trip on the Polar Express with precious friends.

It will be remembered as fun and silly days and evenings with cousins from both sides of the family and the first year that Tommy really understood just how much fun cousins are and how cool they are to hang out with. Thankfully they have amazing cousins of all ages who dote on them and look out for them both.

It is the year that Tommy was old enough for his turn to put Baby Jesus into the manger at Grammy and G-Pa's house.

2011's Christmas will be remembered as the holiday where we celebrated a year in which Joey conquered his open heart surgery and turned one. A year in which Tommy started pre-school and started becoming a little boy instead of a toddler. A year in which we learned just how strong we were and how with help from family and friends we were that much stronger. A year we met inspiring and amazing friends-- some with an extra chromosome and some without. A year of joy.