The Purpose of this Blog

The goal of this blog is to provide education and bring about higher awareness about Down syndrome. It is to share that life with Down syndrome (DS) is not scary, horrible, or to be feared.

My experience comes from raising my daughter, Nebraska Larae (Braska), born November 2006 with Down syndrome.
The posts on this blog are related in some way to life with DS or disability, and they are reposted here from my other family blogs. There are links to those blogs in the margin on the right side of this blog if you would like to visit them directly.

Thank you for coming by.

Tuesday, October 27, 2009

Braska: 31 for 21: Silly girl walking

I’m working hard on my walking with only holding one hand of Mommy’s and taking steps by myself sometimes too!  Here’s a movie we made at Grandma C’s and PaPaw’s on Sunday.   I was showing off a little, but everybody kept cheering for me!

Monday, October 19, 2009

Braska: 31 for 21: Signing with Jackson

Jack is my friend. You probably know that if you read my stories very much because we’re always playing together and he is in my class at school too.  I think he is pretty cool, and we always say hi and give fist bumps. (He calls it “pound it” but it’s ok with me.)

A few weeks ago, I was at Jack’s house so our mommies could make some fun shirts for us for the football games. (Mine is in this post if you want to see what we made.)

We played and climbed up the stairs (when mommies weren’t looking!!) and we even let KiKi play with us a little too.  Before we left to go home, we showed what we could do with our signing, the ones that both of us know. Here’s how it went…

Ok, Jack, you ready?
We’re gonna do some signing!
Hey, we’re gonna do a show, are you ready over there?

Let’s start with touchdown! No?
Ok, how about fish…
And hat…
Sign bird…
And cracker…
This is dog!
Sign baby… (we were very tired and ready for naps, can you tell?)
And now, we are All Done!

Friday, October 16, 2009

Braska: 31 for 21: Go Spartan Sparkles!!

One of my friends sent this to Mommy today and we thought you would like to see it.  It was on the news tonight, so if you watch it you might have seen it there.

Click here for the whole story.  (There’s even a little movie in there.)

Cheerleaders in Iowa are doing a really neat thing!  I can’t wait til I can be a cheerleader!  My mommy started being one when she was little like me, too.

Here’s a peek at the super cool shirt we made for me and KiKi.  (Jack has one too, but he’s not gonna be a cheerleader, probably.  He’s gonna play football or something like that.)


31 for 21: Awareness through Beauty

I did a new background for Braska’s blog last night, with her help, of course.  She is getting better about choosing between two options, so she likes to help.  And she must have liked what she chose because while I was working, as the elements were coming together on the layout, she said, “Oooh, pretty!”  It’s so fun to listen to her just come up with things like that.

Anyway, if anyone is interested, I would be glad to share the background (with your own little one’s pic instead of Braska’s of course) if you want to use it for this month or whatever.  The header is separate and can say anything or nothing at all.  Just puttin’ it out there in case…

And the “Down syndrome is… Beauty” image over there will be making it’s debut on a couple items, shirts etc, soon… if you’re interested in that.  I’ll put it in here too.


Tuesday, October 6, 2009

Braska: 31 for 21: Serious coloring

After we watched the Bears win on Sunday (Woo hoo! I got to say “Touchdown!” alot!!), we took a little trip in the car, and then we went to eat dinner.  The nice lady there gave me a paper and colors. And I was doing really good til Mommy kept flashing her camera at me.

Can you tell what I was trying to say to her with my eyes?

“Mom. Please. Let me color. Enough with the pictures.”

(Mommy note: Since we’re highlighting DS this month, note Braska’s little pinky finger on her left hand. See how it’s a little crooked.  It’s a trait of DS. And we think it’s adorable. Interestingly, it’s also not uncommon in M’s family.)

Monday, October 5, 2009

Braska: 31 for 21: Daddy’s post

My daddy put up a picture of me on his page.  He thinks I’m really cute when I get sad face.  You can look if you want.  I think he’s a little weird sometimes, but he’s my daddy, and I’ll keep him!

Sunday, October 4, 2009

Braska: 31 for 21: PT Days

One day every week I get to go see Miss A, or she comes to see me, and we do some fun stuff. We call these PT days.  If she comes to my house, we go up and down the stairs, but she doesn’t carry me. She lets me climb up by myself, and then I go down, too, but I still have to have a little help sometimes.  I’m getting better though!

Last week, we went to school to see Miss A.  First I had to get some comfy clothes on.  We work hard, you know, so I have to be able to move alot.

Then KiKi wanted to get in on the pictures.  She thinks she has to do everything I do!

I sat down to wait for a few minutes before it was time to go.  But KiKi wanted up in the chair too! 

This week Miss A had some little thing that she put on me called Ther-a-togs. They are supposed to help me stand up better or something. We always do the letters on the wall.  It’s one of my favorite things. I can say most all of the letters when she gives them to me.

That one is H.  I like H.

We also do the tricycle and we climb steps and do the slide, and sometimes we do the swing.  And my favorite thing??  It’s the Space Maze!!!  It’s the best for sure!!!  Here’s a picture of me from a few weeks ago in the top part of the Space Maze. (There’s 3 parts.) I can go all the way up by myself now and I love it!

31 for 21: DS or Down syndrome, What’s in a name?

Names are a funny thing.  I mean, in a way, names are as common as anything can be.  Everyone has one, sometimes two or three, and there are alot of them that are used quite frequently.  Some are unique, but it seems like that takes alot of work these days…people are getting more and more creative with names.

In our family, names are a big deal.  My husband’s name, though I generally refer to him as M in writing and sometimes in person, is Muncher. Yes, that’s his name. He’ll be happy to show you his driver’s license if you don’t believe him.  I have two daughters, Nebraska Larae and Kinlee Carene.  Not the most common names ever, we’re aware.  Usually they are known as Braska and KiKi.  In blog land, I’m known as RK, and many people in my face-to-face life call me that as well.  My name is Randa (pronounced ran-duh, not ron-duh) Kay, usually used with a hyphen—Randa-Kay—because I’m not a fan of Randa by itself. (Long story, not one that the blog will be carrying.)  I have a sister I’ve called by her initials for most of her life, there are others in my family who have been known by nicknames most of their lives and have started using their given names, and there are also cases of the opposite—choosing to use a nickname over a given name.

A name is a common thing, but it can also be a sticky subject with some.  Some of us get very irritated by our name being used or pronounced wrong.  How we refer to a person often is viewed as an important consideration to that person. It might not make sense to me how someone else wants to be addressed, but it’s not so much up to me as it is to them.

Most of you are familiar with how Down syndrome got it’s name.  (Short version: The guy’s name is Down. It’s not a descriptor or a direction, in this case. FYI.)

There is alot of talk, it seems like constantly, about how people with DS are referred to.  There are lots of “don’ts” about what is *not* PC and is, therefore, deemed unacceptable to most. This is not really about that. But for the record, if you want to avoid upsetting most people, using people-first language is the key. Basically, instead of saying Braska is a Down’s child or “She is Down’s” or speaking of “Down’s patients”, the acceptable way to say it is to say that she HAS Down syndrome, etc.  It’s trying to put the person before the condition.  I appreciate the idea, and I try to keep it in mind to use in group circles, but I mess up and that’s just honest.  As I’ve stated before, it’s not something that resonates with me or upsets me, so I don’t give it a big portion of my brain. But I do try to be respectful of those who feel strongly about it, and that’s fine.

Anyway, all that said—the point here is that I’m often amused by listening to groups of people within “the community” talk when we get together or post on boards or whatever.  There are some people who ALWAYS say “Down syndrome” every single time they need to refer to it.    There are some who mix a little abbreviating with “DS” into their vocabulary, alternating the uses depending on the context, I guess.  Then there are some who practically never say the whole name, only the initials.

That’s me.

I’m all about shortening everything all the time, as far as acronyms and initials and nicknames, etc.  This is why I’m RK if you ever see anything from me in writing.  I can’t be taking time type out all those other letters! Life is short!  Ok, so maybe it’s not all about that, but it’s true that people have preferences for things, and I’m sure there are reasons.  I prefer DS, and I so rarely use the full “Down syndrome” in conversation, written or spoken.

It’s not that I’m denying what it is, as someone asked me.  Not at all.  I love having a license plate frame that alerts to our extra-chromosomal princess, I can tell anyone that I work with our local DS group or that I spend alot of time talking to new moms who are dealing with diagnoses. And when I’m in a setting where people won’t know what “DS” is, I do use the full name.  I have shirts that mention DS in it’s complete verbage, and I don’t mind at all.

But when I’m in a group who all can tell me exactly what DS, PT, ST, IEP, IFSP, AAI, NG, and so many other letters are, I don’t ever use the full name.  Just seems repetitive and unnecessary to me.  And as much as I like words—and I really do—I don’t like to use them when they’re not required in that situation.

The way that adults with DS choose to be addressed, besides their given names, is varied, I have found.  There are those who will say they are a person with Down syndrome. There are some who say they “are” Down syndrome—like, “I’m Sally and I’m Down syndrome.”  It was a common practice not long ago, and I’ve met many who prefer it still. (They’ve explained it to me as similar to “I’m a girl,” or “I’m Asian.”) We know a couple who call themselves and their peers “Downsy” or “Downies.”  I know dozens of parents who would cringe at someone calling their child this, which is understandable I suppose, but those who are old enough to make the choice for themselves opt for those names, so I don’t have any problem with that.

As I’ve mentioned before, we affectionately call Braska “our little Downsie” and we’re proud of her for it.  It is a name her dad gave her completely out of adoration—he could not be any prouder of her, all 47 chromosomes.  We never ever try to keep the fact that she has DS from anyone, either in person or otherwise.  I’m proud to say that she has DS and I’m proud of every part of her, related to DS or not.  I’m not afraid of saying  “Down syndrome” but we just use the initials almost exclusively.

What do you say?  Do you find that you have a particular habit of using the initials or the full name?  Maybe you’re into T21 or Trisomy 21 instead?  Why do you choose that particular term?  Do you have any particular name quirks or issues with your given name or nicknames??

Really. I’m curious. Do share!

Saturday, October 3, 2009

31 for 21: Walk in the Park, part 1

Today was the annual Walk in the Park for the DSAGSL. We had a great team for what little effort we put into it. (We’ll do better next time! It was kind of thrown together on our part.)  Most of the family was there with us, and we really appreciate them coming out on a windy, chilly day!

We’ve got a bunch more pics, so that’ll come soon.  Our buddies from C-U also came down for it, so check out Jen’s post at ReJenerationS to see pics from their perspective.

Thursday, October 1, 2009

31 for 21: Year 3

I can’t even tell you how unprepared I am for October and fall and my birthday and Halloween (which means great holidays follow) and cooler temperatures, etc.  But one great thing about this month is Tricia’s brainchild, 31 for 21. (Let me just admit, I always call it 31 for T21 even though that’s not it’s name.  If I goof, I’m sorry…just letting you know now.)

Get It Down; 31 for 21

(Here’s a list of other bloggers participating, if you need some good reading material!)

If you’ve been around for this before, you know the drill… it’s in honor of October being Down syndrome awareness month.  We bloggers far and wide opt to commit (with fingers crossed) to blog each day in October (31 days) for DS (Trisomy 21), though not all posts have to be all about DS, of course.  It’s awareness, people…getting the word out there that this is not some kind of horrible, sad, cheerless life we lead when DS enters the picture. 

Not sure yet which direction I’ll go with this line of posts this month, but I’ve got some thoughts.  I’m praying that I can find the time to get some things down that I’ve wanted to hash out for a while.  We’ll see.

Anything that you’ve always wondered but didn’t get up the nerve to ask??  Something you’d like to know (about DS, Braska, g-tubes, toddler fashion, great books on CD, transitioning to minivan life) but don’t think it’s “nice” to ask those things?  I’m your girl… let’s have it.