What You Didn't See...

So, we got some great 4th of July images... you know, in August.

Well, what you didn't see was....

... Carter choosing to hide in the bushes instead of smile for me,

cover his face and scream,

and then put on his pouty face and walk away from me.

What you didn't see was Rylee holding her doll, assuming she could be in all the pictures,

and then look shocked to learn that I would like some pictures without her doll.

What you didn't see was my attempt at a picture of the two little kids together... the picture where Rylee wouldn't let go of her doll stroller, and nearly poked Carter's eye out with the stick she wouldn't put down.

And lastly, what you didn't see was the neat worn-looking bench my Aunt gave me for photo opportunities like this... the bench which now has chew marks on the arms because I accidentally left it in the yard with an unsupervised dog.  Not exactly the "neat worn-look" I was going for.

So, whenever you see pictures of smiling kids, just remember...

there are pictures that you didn't see.

Unconditional Love

You know you are supposed to love them unconditionally.  But there are times when you have to remind yourself of that.  

Sometimes, they don't listen, despite your endless attempts at teaching them right from wrong. 

You hope that others don't look at them and think, "Wow... they must not have been taught how to behave.  What kind of parents let them do such a thing?"  

It's hard to think that you will be judged, when you are honestly doing the best you can.  

Sometimes, you get so frustrated with them... especially when they do something like this.

I mean, really.  

Zoe... please chew on your own toys. *sigh*

Drum Roll Please...

Remember our traditional 4th of July family photos?  Well, since that post, many of you have been on the edge of your computer chairs, just waiting for Family Photo 2009!   Okay, so no one has even once mentioned the anticipation of the photo...

It's difficult to find the perfect time for the photo. First, all 5 of us need to be together (kind of important that everyone is present for what we call a family photo.)   We all need to have our proper 4th of July attire washed and ready to go.  ("Jeremy, I thought you said your red Lucky-brand shirt was washed...")  

Next, we need to have someone else available for taking the photo.  Someone who, say, knows how to make me look 10 pounds thinner, make Jordyn's hair look perfect, talk Rylee into taking a picture without a baby doll, and convince Carter that his smile looks better without his paci.  Any show of hands?

And last, but certainly not least, we all need to be happy, smiley, and in a good mood.  Oh boy. At the same time?

Well, with the help of Jordyn's friend Emme (who took the picture) and the magic of PhotoShop (I'm not sharing my secrets here... for those of you who know the possibilities of PhotoShop, you may have some ideas) we have it!  So, drum roll please....

(insert drum roll here)

4th of July Family Photo 2009

actually taken in August

Not bad, huh?

And, to add to the fun of it all,  after much bribery  I got some individual photos of the kids.

These photos are very representative of the kids right now... Carter has a huge, genuine smile when Jeremy plays with him (Jeremy was "hiding" behind me when I was taking the picture.) He is also starting to make silly poses (tipping to the side, etc.) when I want him to smile. Rylee has the cutest little quirk of covering her mouth with her hand when she is laughing!  And Jordyn... well, there is only 1 picture of her because she only liked 1 (and I took at least 10...) Ahh... the teenage years.

So, Happy 10th  4th of August  July everyone!! 

A Letter From Rylee (A Little Bit About The "R" Word)

Last week, I wrote about my desire to share what Rylee has taught me, so I posted her first letter about People-First Language.

Here is Rylee's 2nd letter, written last August, prompted by a particular movie that hit the theaters starring with a cast consisting of Ben Stiller, Jack Black and Robert Downey, Jr.

*****

A Little Bit About The "R" Word

August 2008

I wanted to tell you a little bit about myself.

My name is Rylee.

I am 4 years old. I go to preschool and can count to 5.

I am learning my ABCs and can spell my name.

I am starting to write some letters and even know how to read some words.

Do I sound like other kids you know?

And, there is something else that makes me, me...

I have Down syndrome.

People with Down syndrome have a medical diagnosis of

"mild to moderate retardation."

The dictionary says that "retardation" is a condition in which

mental development is slow or delayed.

I think it means that it takes my brain a little bit

more time to work than others.

I'm not sure what the big deal is about that.

My mom says it gives her more time to enjoy the things that I do.

What has happened to the word "retarded" is a sad thing. It's so sad that parents of kids with Down syndrome don't even like hearing the word "retarded," so they call it the "R" word.

It's because people use it in a negative way.

Have you ever done something you considered "dumb" and said,

"Oh, I'm so retarded" or "Man, that was retarded!"?

You may have heard others say it, too,

and haven't thought anything of it.

But, do you realize that when you use the "R" word in that way,

you are making fun of me?

You are saying that I am "dumb."

There is a movie out called "Tropic Thunder." It has some actors in it that lots of people think are funny. In fact, if my parents didn't know what the movie was about, they might even have gone to see it. But, they aren't going to see it, and they hope that others won't see it either.

The actors in the movie use the "R" word in a bad way.

It may not seem like a big deal to you.

You may think, "Well, I don't mean it like that."

But, it hurts me. And it hurts my family.

Mom and Dad say that our words are very powerful.

What and how we say things shows others what we believe.

I hope that you believe what I do... that I am Rylee,

and that even thought it takes my brain a little longer to do things,

I am smart and capable and deserving of respect.

Respect.

Maybe that should be the new "R" word.

The next time you do something you consider "dumb" or "stupid," please think about me. Maybe you could just say, "Oh, that was silly!"

(Because I don't really like the words "dumb" and "stupid" either!)

We all do silly things!

I just don't want you to use the "R" word,

because I don't want to be made fun of...

(and please show support of my family and me by NOT going

to see the movie. This lets the movie producers know that

making fun of me isn't okay.)

Thank you, Rylee!

*****

If you would like to pass Rylee's letter along, please email me

and I can email you her letter as a pdf document.

Thanks for helping to raise awareness!

© 2008 Carin Griffith • Disability Awareness Alliance™

Changing Lives

Talk about acceptance.  Talk about a deep level of understanding.  Talk about an immediate feeling of oneness.  (And talk about a good time!)

The National Down Syndrome Congress Convention is over, but my brain is still on overload. The experience is difficult to describe.  

When I meet someone who doesn't know our family, and show them a picture of our kids (not that I ever show anyone pictures of the kids...) I sometimes think, "Will they notice that Rylee has Down syndrome?  Will they say something?  What will go through their mind?"  I didn't realize how often I thought that.  

At a Down Syndrome Convention, it's so much different.  When you show a picture of your family, you may start to think, "I wonder if they will notice that Rylee has..." and then you stop yourself.  Um, nevermind.  They immediately "ooh" and "aah" over your kids, but, naturally, they are drawn to Rylee, and start asking all kinds of questions about what she's like. You don't wonder what's going through their mind.  You know.  They feel connected to you, and you do to them.

*****

I was reminded about a lot of things this weekend...

... that kids with Down syndrome have an easier time with sight words than with phonics when learning to read, because they are such visual learners.

... that teenage boys and girls with Down syndrome are just like everyone else... they like to hold hands, flirt, and are extremely embarrassed by their parents.

... that it's wonderful to get a good night's sleep without a 2-year-old kicking me in my back (and the fact that I have a 2-year-old in my bed at home is a whole post on it's own... appropriately titled "Things I Said I Would Never Do As a Parent... Before I Had Kids.")

... that individuals with Down syndrome are accomplishing many things -- graduating from college, getting married, and, yes, even swimming across the English Channel and Lake Tahoe! (I am not kidding... check this out!)

... that babies with Down syndrome are absolutely gorgeous, with unlimited potential, and it makes my stomach sick to think about doctors who insinuate to families expecting babies with Down syndrome that the babies should not be born.

... that when you travel by yourself, you can get frozen yogurt in the airport, and no one will realize that you got a frozen yogurt in the last airport you traveled through as well. (Not that I did that.)

... that individuals with Down syndrome have a spirit and a love unlike no other.  Though they are alike others in many ways, there is no denying that the extra chromosome they possess allows them to change lives.  

I know one little girl with an extra chromosome who is changing mine.