Sunday, February 26, 2012

Actors With Down Syndrome Featured in "Entertainment Weekly"

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. 

Wednesday, February 22, 2012

An Amelia Update

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!

Monday, February 20, 2012

Learning to Walk

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.... 

Wednesday, February 15, 2012

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

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

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." 

UP: Brett Ratner

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."

Tuesday, February 14, 2012

My Funny Valentine's....

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!!!

Monday, February 13, 2012

Any Doubts? Blondes Definitely Have More Fun

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?

Saturday, February 11, 2012

Snow Day - Stonz Booties Winner!!!

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!

Become a Fan & We'll Donate to Charity! Click for details

Thursday, February 9, 2012

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

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!  

Booties - Skull/Crossbones Grey with WhiteBooties - Dragonfly AquaBooties - Penguin Yellow

Tuesday, February 7, 2012

A Place of No - Last Week for Stonz Booties Giveaway

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