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 read my post from last year's "Spread The Word" Day.

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.

Simple Love

I remember being very unsure about having another child after Rylee.  And it had nothing to do with Down syndrome and our increased chances for having another child with Ds.  My feelings had to do with time and love and balancing life.  And I'm sure every single thought I had was one that had run through the mind of every other Mom on the planet who had one child and was contemplating a second. (Or at least the Moms that tend to over-think things like I do.)

When we found out Carter was a boy, I knew I was embarking on very unfamiliar territory (and I'm not just talking about which way to point it when you change a diaper.)  My mom has only one sister, and I only have one sister, and Rylee only has one sister... no brothers in the mix.  I didn't know what a relationship between a brother and sister would be like... I couldn't picture it, and I definitely knew I couldn't relate to it.

What I've discovered over the last 4 years is that I didn't have to know.  

Rylee and Carter have shown me.

A relationship between a brother and sister -- between this brother and sister -- is simple.

* * * * *

Rylee is packing a bag with some toys to take to a friend's house.  Carter, Jeremy and I are going to Jordyn's basketball game, and Rylee isn't a fan of the loud buzzer there.  Carter is helping her gather some of her favorite baby dolls...

"Wy-lee?"  (translation -- Rylee -- R's are still W's in Carter language)  "Are you going to be okay without me there?  You know I'm not going to be there, right?"

(Since I'm focusing on the positive of this moment, I'll leave out Rylee's response of "Um, yeah..." in a tone that implies, "Of course I'll be fine without you... why the heck wouldn't I be?!")

* * * * *

Rylee earns coins at school all week for good choices, and on Fridays, gets to visit the "school store" to purchase a little trinket or toy.

(getting into the car after school on Friday)

"Wy-lee! Did you go to the store?  Did you get me anything?!"

"Yes!"  And just like that, she pulls out whatever it was she bought that day, and hands it over.

The first few times she did that, I assumed that she had gotten the toy for herself, played with it a bit at school, got bored with it, and in the very moment Carter asked her, realized she was done with the toy and claimed thoughtfulness of him the whole time.

Then, one Friday, Carter asks her if she has something for him... and she pulls out a little Toy Story toy.

Yup. You go right ahead and claim thoughtfulness the whole time.  Because that's exactly what that was.

* * * * *

I guess a brother/sister relationship is a lot like relationships between sisters.

It's simple.

You love each other in a way that is indescribable.




(And, again, in order to focus on the positive love between these two, I'm leaving out the previous 24 pictures of Rylee kissing Carter in which Carter's facial expression is one of complete annoyance that his sister is kissing him, even though it's at Mom's request. Ahhh... I can't wait to watch this relationship grow!)

Inspired

The other day, I ran across a blog post about Pinterest.  H.I.L.A.R.I.O.U.S.  I don't know this woman, but I related to nearly every word she said... and I admired the blunt and brutally honest way she said them!

I love Pinterest. I often find myself lying in bed at night browsing the fun ideas while watching the Friends marathon on Nick at Nite (which, by the way, still makes me giggle out loud -- I miss that show!)   It's inspiring. (Pinterest... not Friends.) Or at least it is supposed to be.

There are moments when I find myself slipping from "being inspired" mode to "feeling inadequate" mode. You know, like when I saw the incredibly awesome monthly shots of a pregnant mom (who, of course, only looked pregnant in her tummy, and not in her face, hands, legs and feet) and had her adorable 2-year-old daughter peek in and touch her perfectly round tummy on the 9th month... that's when the "inadequate" mode set in.

I try to recognize the mode switch. Sometimes when it happens, I think of an excuse of why that isn't "mine"... (like the fact that when I was pregnant, I was miserable and felt like throwing up nearly every second of the day, and taking a picture of myself was on my list of to-do's, just under "smack my head against the bathroom wall.")

Then I remind myself that excuses aren't the way to go... (not quite the positive spin I was searching for) so I feel happy for the person who's "pin" it is... "Wow, I bet that Mom is so incredibly happy she has those amazing pics of her pregnant days!"

Yeah, that's better.

Sometimes, a pin is easy to pass by.... either the style of it just isn't me (I don't think a lamp made out of plastic spoons says 'Carin.') or the usefulness escapes me  (I just don't know that I would use a pot-holder-cleverly-and-cutely-turned-cell-phone-case.)

But then comes the fun stuff... the easy stuff... the do-able stuff.

Something I can print and stick in a frame I already have in my storage room and put up for Valentine's Day and look all festive?  I'm IN!

And when I saw these, I knew I could pull it off.

There it is. Inspiration.

That's the mode I want.

So, tomorrow morning, the kiddos will wake up to mail in their mailboxes.... a note about something we love about them.

Mail every day until Valentine's Day unless I forget a day in which I will make up an excuse that my head had so many ideas of what I loved about them that I couldn't choose and that they would have two notes in their mailbox the next day.

So, thank you Pinterest. 

I'll pass by the photos of the elaborate backyard patio draped with gorgeous fabrics and decorated in hand-made flowers, and the blanket sewn from clothing from someone's first-born's first year of life...

and head right for the photos of Valentine Mailboxes.

And I will feel inspired.

* * * * *

Mailboxes from Hobby Lobby... covered with scrapbook paper and decorated with stickers and ribbon. (Carter opted for no ribbon.)  Candle holders from The Dollar Store (and be sure you search through all 400 of them to find ones that stand up straight, because 395 of them don't, and they are not such high quality that you can bend them gently to straighten them out.  Not that I broke 2 of them trying and had to go back to the store to buy more.)


Oh, and grab a black frame while you're at the Dollar Store... go here for the cute printable, and you're all set!