RAISING JOEY

CDSC’s Legislative Video

The Connecticut Down Syndrome Congress recently produced three new videos, below is the legislative one.

Some more from John C McGinley

Thank you Johnny Knoxville!!

Check out this video done by Johnny Knoxville and self advocate eddie Barbanell. Both wonderful advocated for our families and spreading the word about how much it can hurt to hear the “R word” used.

Thank you John c. McGinley!

An article by actor John D. McGinley & fellow parent of a child who has Down syndrome. Please take a minute to read to understand why I get so upset when I hear/read one of my friends/family use the word ret*ard. Words do hurt, they can hit like a fist.
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N*ggers, K*kes, F*ggots, C*nts, W*ps and the R-word

By John C. McGinley
Actor and Spokesperson for the National Down Syndrome Society
Posted: February 10, 2010 04:10 AM

Editors Note: The following piece contains strong language, used to explain the impact of certain words in our society.

There is an easy way to put this initiative into motion. Please join our effort to “Spread the Word to End the Word.” Go to www.r-word.org.

31 for 21, October 4th

Unfortunatly for me, 4 years ago, I was a frequent user of the “R” word. I never gave one thought to how much it could really hurt someone emotionally who has a loved one who has Down syndrome or any other disability. Once I had Joey, I said it once and my own words, hurt myself. Tears welled up in my eyes when I realized that my own words were used often by others (and myself) in a negative way.

Some people don’t even realize when they say it or think nothing of it.

The use of my words has changed dramatically since Joey was born. I used to also say, “That’s so gay!” and now I no longer say that either. So many people think they’re being politically correct with their language and they’re not.

To me, the use of the word ret@rd is just as bad as saying the “N” word. It hurts just the same to me as the “N” word hurts to African Americans.

Please check out the websites listed below about the use of the “R” Word and “People First Language.” Words matter, please use them correctly.

The “R” Word Campaign

Also, be sure to check out Kathy Snow’s website on People First Language!

31 for 21, October 2nd

Almost 3 1/2 years ago when we found out prenatally that Joey was going to have Down syndrome, I never imagined in my wildest dreams that I would have made the friends that I have who also have children who have Down syndrome. It’s truely amazing how one little chromosome has brought so many of us together.

Some of us bond via Facebook or MySpace, some through Blogging and others through their local Down syndrome organization like the Connecticut Down Syndrome Congress. I have found friends in all of these including my best friend, Melissa!

I also never imagined that I would have gotten as involved with the CDSC like I have. I started out by joining the Buddy Walk Committee, from there I joined the CDSC’s Board of Directors, then from there I started The Holland Committee, which is the CDSC’s New and Expectant Parent Outreach and Support Committee.

After I got The Holland Committee up and running I signed up to take a 6 week Parent Leadership and Advocacy Class. While taking the class, I never imagined what my next step would be. Next Wednesday, October 7 is the CDSC’s Annual Membership Meeting where, myself and fellow classmate/ parent, P.S. are to be voted in by the members & to become the CDSC’s Co-Presidents and work together for the next 2 years!

It’s simply amazing how one simple chromosome can enrich and enhance one’s life in so many ways… amazing friends and amazing opportunities for the rest of my life!

Glen Beck on Friday!

One of my favorite Mom bloggers, Barbara Curtis, who happens to have a child with Down syndrome, actually several children with Down syndrome is going to be on Glen Beck on Friday at 5pm!! Be sure you tune in!

video to share!

I’ve been meaning to share this one…

31 for 21, October 3rd

A huge thing that I’ve been trying to push with people & Down syndrome awareness is people first language. Individuals with Down syndrome are people first. They eat, breathe and sleep just the same. They ARE the same minus having an extra chromosome. They deserve to be treated the same.

I can’t stand the word ret@rd. It makes my blood boil! I am so ashamed to admit that I used to use that word before Joey was born. It hurts me so much whenever I hear someone use that word in a negative way, especially when it’s a friend or family member although most of our family doesn’t use the word anymore either.

A great website to help educate individuals about people first language is Disability is Natural. Her post about people first language is excellent!

A blog that is a must read about disability awareness is Chewing The Fat. Dave Hingsburger is an awesome advocate for people with all disabilities!

~~~Also, don’t forget about my 31 for 21 giveaway! I’m giving away one of my DS awareness bracelets! Click here to enter!

R-Word.org

Eddie Barbanell makes the news!

Eddie has done two interviews about Tropic Thunder.

Fox & Friends

The Morning Show With Mike & Juliet

He also has a blog, he doesn’t post too often but enjoy, You Scratched My CD, You Know!

!!!

I wanted to share with you all what just happened to me!

I just got back from dropping off Joey’s poo sample at Quest Diagnosists and while in the waiting room, this lady kept looking at me and Joey. After a couple minutes, we started talking about Leah and her teething and then she said, “Were you on the news last night?”.

I smiled and told her yes and then she said, “thank you. You and your girlfriend did a wonderful job. You guys really opened up my eyes.”

That made everything we did yesterday worth it for me!

News story & clip

Protest outside theaters showing “Tropic Thunder”

Click here for the video. 

By News Channel 8’s Chris Velardi
Posted August 13, 2008
7:50 PM

(WTNH) — The new comedy film “Tropic Thunder” is no laughing matter to champions of the intellectually disabled. They’ve called for a  boycott of the movie.

Cecily Quincy’s son Cory is almost 3-years-old. He’s full of energy, loves to laugh and enjoys playing with his older brother and younger sister.

Cory has Down Syndrome and Quincy feels a great responsibility to protect him. “We really want to make his world a better place,” she said.

Quincy is a member of the Connecticut Down Syndrome Congress, an advocacy and support group made up of parents, conducted by volunteers like Cecily and Jessica Heeran, 3-year-old Joseph’s mom.

Together they are joining with other advocacy groups,  protesting the new movie “Tropic Thunder” — a Hollywood blockbuster which opened Wednesday.

What upsets them most is what they call the insensitive portrayal of the intellectually disabled and the repeated use of the word ‘retard.’

 ”It kills me even to admit it, but before I had Joey, I would use that word occasionally and now, looking back, I regret it more than anything else in my whole life,” Heeran said. “Knowing that I once said that word in that way.”

In Tropic Thunder’s movie-within-a-movie, actor Ben Stiller plays an actor who portrays a character with a disability.

On Good Morning America, Wednesday morning, Stiller (who also directed the film) says his intention is to make fun of Hollywood, not people with disabilities.

“In the context of the film, I really feel like it’s really clear that we’re making fun of actors and actors who try to use serious subjects to try to win awards,” Stiller said. “It’s about actors and self-importance.”

But, protesters say it’s about much more; it’s about being respected and not being teased.

“I think I always feel sad all the time and including when someone actually tries to be really hurtful about it,” Kirsten Saracino, of Burlington, said.

And it’s about people like Cory Quincy. “It’s community awareness,” Quincy said. “To know that there are children and adults in your community that are just like you, just like your children. And, it’s just the point of just meet them, just meet my son.”

Guess who was on the news?!

That’s right. A little before noon, my girlfriend, Cecily called me and told me the news crew was going to be at her house at 1:30 to interview her about Tropic Thunder. The kids and I headed over to support her while being interviewed. The news guy asked if he could interview me too so, I hope I don’t sound like too crazy on there, lol!

They still haven’t posted the news video so as soon as they do, I will be sure to post it too!

Photo and video editing at www.OneTrueMedia.com

Tropic Blunder…

Why the CDSC and many other organizations are joining together to boycott against this movie. Since I do my best to keep Raising Joey family friendly, you’ll need to click “read the rest of the entry” to read why so many of us are upset with Tropic Thunder.

Continue reading Tropic Blunder……

Words DO hurt

Dave Hingsburger has a post today well worth heading over to this blog and reading if you haven’t already, Words Hit Like A Fist.

Thank you Dave, you are such an awesome advocate for people with all different types of disabilities!

Thank goodness we have Beverly Beckham!

Loved and cherished, she thrives

By Beverly Beckham, The Boston Globe 

June 22, 2008

I strap her into her car seat and tell her that we are going to the doctor. And she smiles at me and says, “Mimi’s house.”

“First we’re going to the doctor, Lucy, then you can come to my house, OK?” And then we sing, in big, booming voices, “Police officers, firefighters, a doctor or a nurse. They help me if I’m hurt. They help me if I’m hurt!” over and over until we arrive at Norwood Hospital.

Lucy, my granddaughter, is almost 5, but she was only 3 days old when we came here for the first time - the entire family, her mother and father, aunts and uncles, her grandfather and I. “She has three holes in her heart,” Dr. Geggel told us. It’s not unusual for children with Down syndrome to have holes in their heart, he explained. Sometimes the holes close on their own. Sometimes we have to operate. It sounds worse than it is. Don’t worry. We do these operations all the time, he told us. Calm and kind and quietly caring, he was then and continues to be.

We came here regularly, to this satellite of Children’s Hospital, to have Lucy tested. She was so tiny then, the smallest of babies, poked and made to lie still, constantly being assessed and evaluated.

No one could get her blood pressure, the littlest cuff too big for her arm. But even if a cuff had fit, the pressure wouldn’t have registered because it was that weak, because her heart was that compromised.

I took her to a healing priest when she was 4 weeks old and he held her up like a trophy and announced that he had cured her and a church full of people clapped. But he was wrong. Lucy had surgery at Boston’s Children’s Hospital a month later and there were complications. And when we got her back, she still wasn’t cured.

When she was 4 months old she had to have more surgery to fix what went wrong. Now, every June, just before her birthday, we come to Norwood to have her tested. Continue reading Thank goodness we have Beverly Beckham!…

I’m proud to say

I drive with it proud on the back of my van!

So you think YOU can dance?

I sure as heck can’t, lol! But check out this young man with a little something extra who can!!!

What a true advocate!!!

Last night’s So You Think You Can Dance!

McMorris Rodgers Launches Down Syndrome Caucus

She’s amazing! She’s really going to help make a difference for our kids! She would have my vote if we lived in Washington.

McMorris Rodgers Launches Down Syndrome Caucus

 I can’t believe Cole is already one year old! It just seems like yesterday that I was posting about him being born.

World Down Syndrome Day 2008

Happy World Day Syndrome Day 2008!

“Down Syndrome International (DSI) has officially earmarked 21 March as World Down Syndrome Day(WDSD). The date was chosen to signify the uniqueness of Down syndrome in the triplication (trisomy) of the 21st chromosome and is used synonymously with Down syndrome.

Singapore was selected to launch the inaugural WDSD in 2006. The event, held at the CHIJ Secondary School in Toa Payoh, in the heartlands of Singapore was very successful and well attended. Many other organizations worldwide joined in the celebrations with events and activities in their respective countries.This year the theme for 21 March 2008 is “Aim High Enough”, to continue creating awareness about Down syndrome and promote acceptance of diversity.All DSI members and related organizations worldwide are encouraged to observe the WDSD together with the community in an appropriate manner.”

Having a child with Down syndrome and promoting awareness of Down syndrome is something I truly believe deserves so much more attention that what it gets. Part of what I want people to realize is, that people who have Down syndrome are people first.

When I was pregnant with Joey and we received the prenatal diagnosis of Down syndrome, we were devastated. Thankfully, we overcame those feelings and realized Joey was going to be just like all other babies. Maybe a little slower reaching some of his milestones but still reaching them. He’s a very happy 2 year old little boy and we wouldn’t have him any other way!

Also, please say a prayer for Rhett today, he is having surgery today and his family is requesting lots of prayers today. Please stop by his mom’s blog and leave a little note.

MayBell’s Soaps & Candles

Need some soap or candles? How about heading over to MayBell’s Soaps & Candles? Two young ladies whose sisters have Down syndrome have started their own business to raise money for Down syndrome. What a wonderful way to be advocates to their little sisters and raise money for such a good cause! Did I mention that the candles and soap are all natural and made from soy and natural oils?

31 for 21, October 2nd

I read this article yesterday and wanted to share it as part of my 31 for 21 post today. It really did make me think about what truely is normal…

What is Normal? By S. Michael Craven, The Christian Post

Recently, while wandering through my local grocery, I turned the corner, heading up the cereal aisle. I had no more walked ten feet when I caught the attention of a stranger – a young man in his mid-twenties – walking toward me. Upon seeing me, his face lit up and a smile spread from ear to ear. I smiled in return, his pace quickened and he marched straight over to me and with a welcoming voice said, “Hello, how are you?” I stopped, we exchanged a few friendly words and then after a hardy “goodbye,” he moved on to greet the next person similarly.

Within a moment, an elderly couple followed, keeping an eye on the young man who, I quickly surmised was their son. The grinning mother said, “He’s very friendly!” I laughed, that was an understatement! I stood there silent for a moment, my spirit energized by this unusual and yet most human of encounters.

This young man was very different from me as I don’t normally greet the strangers I meet each day in such a friendly and familiar manner. His congenial nature was heartwarming and he seemed to have a sincere appreciation for other people simply because they were - well - people. This man was, simply stated, better than I. Oh, he was different; he had Down syndrome but as a human being, he was still better than I. He loved without reservation or condition; he did not judge others based on what they looked like or what they were wearing; he understood the gift of human touch and kindness and was ready to share this gift with everyone he could. He was not the least bit self-conscious much less self-absorbed. There was no guile in this man. He was far closer to innocence than those of us who are “normal.”

For the rest of the article, click here.

As I look at Joey and Leah, I don’t see a difference. They are both my children, they both eat & drink, breathe the same, sleep, they’re both human beings. They are both normal to me. The only difference is that Joey has an extra chromosome and Leah doesn’t.  

Is there such a thing as normal? Each of us is different in our own way. We all have our aches and pains, some more than others but that doesn’t make us “different”. So why should an extra chromosome make someone not normal?

When I was pregnant with Leah, I had some people ask me if Leah was “normal”, “healthy”, “not Downs”, ect. When I was asked those questions, I didn’t really think a whole lot about it until now.

Like the author in the article pointed out, American College of Obstetricians and Gynecologists has their new recommendations for pregnant women and testing for Down syndrome. So many babies are being aborted when they shouldn’t. With the new guidelines, there are many false positives, and (in my opinion) the babies diagnosed prenatally with Down syndrome should not be aborted. Their precious little lives are ended just because they are not “normal”. There are so many families willing to adopt a child with Down syndrome, just look at these children!

To me, my life, my children are normal.

31 for 21

Tricia from Unringing The Bell is hosting Get It Down, 31 for 21. What a wonderful way to help raise awareness for Down Syndrome this month! For those of you who don’t know, October is Down syndrome awareness month. I’m going to do my best to post everyday about Down syndrome this month. Hopefully I won’t miss a day with Joey & Leah! Also, wish me luck today… it’s my first day alone with both of them!!

The Mya Gonzales Foundation

The director Oklahoma State University’s football program, Jimmy Gonzales and his wife, Mary found out in 2005 that the little baby Mary pregnant with had a little something extra. The Gonzales family has started a foundation to help families out who not only have children with Down syndrome but other special needs as well.

The Mya Gonzales Foundation is a non-profit organization created to be a beacon of hope for families of children with Down syndrome and other special needs. Our overall mission is to raise funds that will be used to provide these families with the resources and support they need to help their children reach their fullest potential. We will accomplish this goal through:

1. Providing financial support to new and existing Rise Schools across the country that serve students with disabilities from age 18 months to six years. We are currently financing the opening of a new Rise School in Stillwater, Oklahoma, which is expected to open in August of 2007.
2. Awarding grants and endowments to worthy charities, research facilities, individuals and other organizations that share in our vision to create more opportunities for special needs children and their families.

Click here for their prenatal diagnosis story.