Fall 2012

Fall 2012
[learning to live a perfectly imperfect life]

3/21/12: World Down Syndrome Day













Happy World Down Syndrome Day!

(hey, I still have 32 minutes left of it anyway!)

In September, when we have our local Buddy Walk, and in October, during Down Syndrome Awareness Month, I share a lot about Down syndrome... Down syndrome facts on Facebook and presentations at Rylee's school.

So when this day rolls around, (3/21 chosen because individuals with Down syndrome have 3 of the 21st chromosome) I feel like I want to share something a little different.

I want to share that even though special days or months throughout the year are great for stirring up awareness about Down syndrome, a lot of days I don't even think about Down syndrome.

Life with a child with Down syndrome is, often times, simply... life with a child.

So many moments in our lives are similar to moments in the lives of others...

Our kids argue in the back seat of the car.

Rylee complains when she has to put away her iPod at bedtime.

Rylee and Carter love playing on the swingset, and they help each other flip their legs up over the bar to hang upside down like monkeys and make their Mom incredibly nervous.

Our kids complain when we make asparagus, and ask for macaroni and cheese or hot dogs for nearly every meal.

Rylee loves watching Jordyn do her hair and make-up in the morning, and she tries to put clips and bands in her hair like Jordyn.


And then there are the moments that others may look at in our life and think, "Well, that's because Rylee has Down syndrome...."

We take Rylee to Speech Therapy on Mondays after school.

I go through Rylee's backpack after school each day and look in her communication notebook with her teachers to see how her day went (though Rylee shares a lot about her day herself!)

We go to Music Therapy on Wednesdays after school and Carter and I play games while Rylee has therapy and sometimes, Carter's called in to join them during the last few minutes of therapy.

I change the visual schedule on the table each evening at supper and we talk about who Rylee will be seeing the following day at school (therapists, etc.) and what other activities we have going on because Rylee is a very visual learner and she likes to know ahead of time what to expect.
 
Those moments are still life with a child.

They are life with our child.


And life with this child... well, it's pretty darn good.

Different and Same

Different year.  Different day.  Different clothes.




Same slide.  Same swing.  Same boy.



A few moments today took me back to a younger boy...

a different age...

the same love.

Spread the Word to End the Word: The Next Generation


Last week Jordyn's basketball team (Brandon Valley) played at a high school nearby, and because of the close proximity of the game, many of our high school's students came to cheer on their team. After the game, Jordyn asked if we had heard one of the chants the opposing team's student section had yelled during the game. Apparently, after a questionable call made by the officials (in favor of our team), the student section of the opposing team began chanting "That's Retarded!"  Jeremy and I looked at each other -- and after wondering how in the heck neither of us had heard it, my heart ached. 

As a parent, I think about the next generation. I feel like if we can bring awareness and create change in our kids, it can only get better each generation.  So, when Jordyn told me about this -- about kids in her generation -- still using this word, it felt like such a let-down. 

(Note: This is definitely not meant to be a slam at Jordyn's generation... I realize that many people in my generation still use this word, and people in generations before me still use this word... but that's for another post. :)

The following day Jordyn came home from school and told us we had to read something.  A friend of hers named Spencer had been at the game (also the Junior Class President), and had written a letter to the opposing team's high school...

and as I read it, I got tears in my eyes.

"... after a questionable call made by officials, the Washington High School Student Section disagreed with the call and made it very apparent with the use of the chant, 'That's retarded!'  This was done repeatedly....  (the behavior) was unacceptable, uncalled for, and extremely offensive.... the use of the "R Word" was taken very offensively, not only by our student body, but our parents, administrators, and coaches."

"...as the Brandon Valley administration has informed us, no matter how this word is used, it is not tolerated under any circumstances and can easily offend people with disabilities that we have in our district and were present at those games.  The only "R Word" that should be used in any high school activity is RESPECT."


This letter is so incredible on so many levels... 

... Spencer (Jordyn's friend) apparently was raised in a home environment where this word was not acceptable (way to go Spencer's parents!)

... Spencer not only believed this was unacceptable, but actually took the initiative to write a letter

... after being posted on the Brandon Valley Student Body Facebook Page, it has received hundreds of "likes" from students in our high school

... Jordyn has surrounded herself with friends like Spencer!

* * * * *

So today, on Spread The Word to End The Word, I think about the next generation. 

I think about Spencer's letter. 

I think about all the support the letter has received by the other high school students.

I think about Jordyn, who so willingly talks with a man who comes up to her after every basketball game... a man from our town with  a disability different abilities who attends every single basketball game to show his support.

I think about Jordyn's friends, who used to use the R-word, but because of Jordyn's influence, have since stopped... and are now correcting other teenagers when they say it.

I think about Carter, who will grow up only knowing acceptance and appreciation for everyone.



Yes, I think about the next generation.

They are creating awareness and change.

And so, it will only get better.

* * * * *

Please click here to take the "Spread the Word to End the Word" pledge.


You can also read Rylee's Letter "A Little Bit About the 'R' Word" (written August 2008.)  You can also click here to download her letter.