Spread the Word to END the Word Day

Today is Spread the Word to END the Word Day.  In 2008, Special Olympics launched the www.r-word.org website to combat the inappropriate use of the R-word.  

Many people think it is OK to use the word retard or retarded if they are not referring to an individual with a disability.  I admit, that before Ben came along, I said it about myself on occasion, when ever I did something stupid. Since I did not have a personal connection with anyone who had a disability, I did not realize how hurtful this word was.  

But the word does hurt.  It hurts a lot!  When you say the word in a derogatory way, it puts down people with disabilities, whether you are referring to them or not.   It says you don't want to be like them.  It makes them less.

Most people, when confronted (or educated), apologize right away and really try not say the word again.  But believe me, speaking up in person, is not an easy task.  There are times I have let it go because I did not think it would be worth the fight, and times that I turned on my Mama bear and took the lesson way to far.  It is much easier to sit behind my computer and type this than it is to confront someone face to face.  But I am committed to being an advocate for Ben, and because of that, I have to speak up.  

But there are some who when confronted, start talking about the right to free speech, about how every group wants certain words banned, and how we should not be so sensitive.   Do you have a right to say that word?  Sure.  You have every right to be a jerk and put down other people. People with disabilities are an easy target because they are less likely to defend themselves.  But individuals with disabilities have feelings, and are hurt by word as much if not more than everyone else. Families have feelings

If you are still confused.  Here is handy flow chart.  

There is an easy solution.  Don't be a jerk.  Don't say things that put others down.  Make them feel like more, not less. Be someone who helps people up. Be respectful.  Advocate for those with special needs when you hear someone say the word and ask them to stop.  Take the pledge http://www.r-word.org/  

Finally, if you still need convincing, this sheet from KC Down Syndrome Guild sums it up nicely. Click to make larger.

World Down Syndrome Day 2016

World Down Syndrome Day, March 21, 2016 will be here before we know it.  March 21st was chosen to be recognized as  World Down Syndrome day because of its date 3-21, to represent the 3 copies of the 21st chromosome that individuals with Down syndrome possess.  #wdsd2016

This year Ben's Brigade is kicking off our fundraising efforts a bit early to help celebrate World Down Syndrome Day.  We created our own new design, because we wanted shirts in the traditional awareness colors of blue and yellow that were not dated, so they could be worn every year on March 21st. We also wanted a design that's sole purpose is to promote Down syndrome awareness and not advertise for any specific group.   This design will be offered on both long and short sleeve t-shirts and 3.5 inch photo buttons available with a pin or magnet backing.  Pre-ordering of this shirt design is now closed.  We do have a limited number of shirt available for purchase.  Email bensbrigadene@gmail.com to see if your size is still available.  Proceeds from the sale of this shirt will be donated to the newly forming Down Syndrome Advocates in Action group.  We would love it if you would share this post with anyone who might be interested in promoting positive Down syndrome awareness on World Down Syndrome Day.

Thank You!

2014 Ben's Brigade

.  Our photographer Erica Thompson of Images for a Lifetime built an amazingly cool set just for our kiddos, and Ben got to be one of the first ones to try it out.  While the idea was to sit or lay in the circle, Ben did not want to have anything to do with that.  He wanted to do just one thing.....

JUMP!

What you can't see in this photo is his big brother Noah who was laying on the floor about to get jumped on.  Erica got about 10 photos just like this and Ben had a blast!  

She did get a couple more good photos, but all of them have one thing in common.  If he was not jumping, he was getting into position to jump again.  

 This one is my favorite.  I call it his surfer dude pose.  I also reminds me of the opening of one of the James Bond movies.  

Thank you for supporting Ben's Brigade!

NDSS Times Square Video

I am proud to announce, for the 2nd year in a row, that Ben's photo has been chosen to be in the video that will be shown at Times Square in New York City, to help kick off the National Buddy Walk on Saturday, September 21, 2013.

Ben is a little brother, of two big brothers, who love sports.  In his young life, he has already been to more baseball, basketball, and football games as a spectator, than some people will attend in their entire lives.    While at his brother's baseball games, he loves to wear his umpire mask, squat down behind the fence and call balls and strikes with the umpire.  He has caused more than one umpire to turn around, ready yell at the person contradicting their calls, and you can instantly see the smile appear on their face when they see who the culprit is.  Sometimes they even come over to visit with Ben between innings, which makes his day.

He is no different with basketball as you can see here.

I knew it would be huge for Ben to get to play sports like his big brothers, but the reality did not hit me until he got home from his the first night of practice.  He ran in the door, gave me a huge bear hug and exclaimed, "Mommy, I a baseball player"!  This was the first year he was old enough to play, and was on our local t-ball team with his typically developing peers.

Did he need some extra help getting lined up to bat and getting his helmet on?  Yes.  Did he need some help staying focused in the outfield, when no balls were coming his way?  Yes. Did he need help keeping track of his hat and glove?  Yes.  But so did a lot of the other kids.   Did he need help hitting the ball, running down a grounder or knowing where how to run the bases?  No.  He had paid enough attention at some of the other games to know what to do.

So the next question is how did photos of Ben get selected 2 years in a row to be one of the 200 chosen to be in the video when there were over 1,100 submissions?

I have a theory.

The purpose of the video is to promote the value, acceptance and inclusion of people with Down syndrome.  Unfortunately there are lots of people in the world today who don't realize that individuals with down syndrome are more like everyone else than they are different.  The first 4 years I sent in the cutest possible photo I could find, but none where chosen.  Last year I chose a photo of Ben playing his brother's drum set, because I thought it showed a person with Down syndrome doing something that many people would not realize they were capable of doing.  This year I chose the baseball photo, since it showed how much enjoyment he got from being included with his classmates.

My husband and sons wanted me to submit this photo instead.

It was taken just after the first photo and they felt it showed Ben's determination to hit the ball.  While I do like it too, a Mamma's heart almost always goes with the smile, and since I was the one sending it in, I got to choose. By the way they also wanted me to point out that the pink bat was not his.

To view last year's NDSS Times Square Video click here.  Ben is at 14:35.

Capital City Buddy Walk

This is Ben .
It's time again to raise money for the Down Syndrome Awareness in Lincoln.

How can you help? Many different ways! You can donate on-line by going to Ben's Brigade team page by clicking here. You can donate by check made payable to DSAF of Nebraska and send it to The Willey Family (email me @ awilley1@yahoo.com if you need the address). But the best way to show your support, is to register and come walk with us! Our team name is Ben’s Brigade. My family would love to see you there! To register, click here. Be sure to register by September 20th to get a free T-shirt with your paid registration!

The walk is 1 mile around the Children’s Zoo but there will be so much more than just the walk! I know they have a lot of fun stuff planned for the kids! Click here to see the brochure.

Thanks for reading. Thanks for donating. Thanks for loving me for me!

Love,
Ben
Randy, Angie, John and Noah Willey