Day 1 in WI: Promised Pics

Since I am legalistic, this is yesterday's post (I passed out on the couch last night before I got a chance to get it published). I still have to write something for today. 31 or bust!

So, while the two 3s were making their way to Friendville and Lily was temporarily keeping a safe distance...


...Michelle and I, thanks to her wonderful husband taking charge of all five children, made out way to the Elk Lodge to hear Rachel Coleman give a presentation.


If you don't know who Rachel is, you've obviously never been to my house. In my house, and many others, she is an icon. She is, in her words, "a rock star to preschoolers." And it's true!

Though, I must admit, I love me some Rachel as well.

She has played a significant role in my child's development. The program that she co-created with her sister, Emilie Brown, has brought communication into our home well before Playette was able to speak. And that's HUGE, people. HUGE.

So, not only does my kid have a second language that connects her to so many more people, she can tell us her wants, needs, and desires, and has been able to do so in increasing complexity for a long time now.

Plus, she can impress people with her mad signing skillz. I can't say that I don't enjoy that. Take that, stereotypes! My kid can learn, and teach, yo!

Rachel told that room full of parents her story and how it related to the creation of Signing Time. She shared with us how she dealt with unexpected challenges. She had me BAWLING. And then she sang, which made it that much more messy for me.

It was a great messy though. I'm so glad that I had that opportunity.

After a lot of chatting and snacking once the presentation was done, Michelle and I headed back to the house. But first, we stopped at the grocery store, where I discovered that that whole Packer thing?

It's serious.

Not only was the whole store decked out in the signature colors, but so were the snacks.

Check out these Rice Krispie treats.:


How can you not love people that color coordinate their snacks?

I have to wonder what the cashier was thinking when we stopped to take this pic. I mean, it was midnight and I was being a total tourist.

That reminds me. I look really sleepy in this pic, huh? There's a good reason for that. I had had a long couple of days. In my next post, I'll tell you why.

Open Book

That's me.

Go "Anonymous" if you like.

This is my one open invitation for you to do so.

And don't worry about me tracking you down.

Anyone who knows me can tell you that I'm too lazy to do that stuff.

Even though I promised pictures from our trek to the land of battered fried cheese balls (mmmm), that will have to wait another day.

Why?

Because I unexpectedly had a few Ds-inspired moments today. They caught me totally off-guard.

While away, my TiVo overflowed. That should tell me that I watch too much crap, but instead of beating myself up about it, I grabbed some goldfish crackers (OMG, when did they get so good?!) and plopped on the couch to watch the latest episode of "Glee."

Now, if you don't watch the show, I must tell you that one of the characters in the ensemble cast is both coach to, and a younger sister of, a person with Ds. Her name is Sue.

So, in this episode, Sue is talking about her personal spiritual beliefs and how those came to be.

She said that she used to pray as a child because she noticed that her older sister, whom she idolized, was not respected by other people. They made fun of her. They called her names. And that made Sue very sad. She wanted it to stop. So she prayed for her sister to be cured.

<<< OMG, TEARS! >>>

So, yeah, I welled up a little.

And then, after that was over, I clicked over to "Extreme Makeover: Home Edition." Now, I don't usually watch that show, but I recorded it this time because a friend informed me that they were featuring a family that included six people with Ds. Michelle and I caught part of the episode, but I didn't see the beginning and I wanted to know the backstory. (Big ups to Blackberries with TiVo apps.)

I just feel like I have to say some things here.

I don't care what you hear on TV.

1. People with Ds are not banished to a life indoors. They can leave the house and live fulfilling lives.

2. Adults with Ds are not "kids."

and

3. It is insulting to call people with Ds anything other than people who happen to have Ds. Saying things like, "They're Down syndrome."? Really? How does that even sound right?

There was more, but those are the things that really stuck with me.

It was a nice house when they were done, so yay. But damn. No one thought to correct the voiceovers?

I also heard, on Rosie O's radio show this morning, a woman who called in regarding Glee say, "blah blah blah and then the part with Sue and her Down syndrome sister blah blah blah."

Grates every time.

Why must people say it like that? Why do so many people use it as an adjective instead of as a noun?

Honestly, I can understand if someone were to describe me as "the Black lady", but would you call me "Sore Throat Crittle"? Or, because Ds is not an illness and I don't want to even to allude to it as such, "Size 7.5 Shoe Crittle"? Would you say that I am my size 7.5 shoes?

I don't know if I'm being perfectly clear here, but the point I'm trying to make is that I have a sore throat and I wear a size 7.5 shoe. Those are not who I am.

Playette has Ds. It's not who she is. She is so much more than her diagnosis.

Ahem.

Ok, so at least as I watched "Teen Mom" tonight (don't judge me, my kid was already asleep), I noticed that they bleeped the R-word.

That made me feel a little better.

So.

What I originally came here to say was:

ASK ME WHATEVER YOU WANT ABOUT DOWN SYNDROME.

PLEASE.

There's a lot of bad info out there.

I want to help.

Do it for the "kids."

I'm kidding.

Only about the "kids" part.

Totally serious about you asking me whatever you want to know about all things Ds-related.

Personal or otherwise.

Go anon or email me directly if you must.

It's EXACTLY like That '70s Show!

Ok, well maybe not exactly like it.

But it was Wisconsin.

And we were there.

Yup, Playette and I made the fantastic decision to head east for a long weekend of visiting with friends and adding a little bit of advocacy on the side.

Who do we know in Wisconsin? Well, these great folks.

I've written about them here before. They have a daughter named Ruby who is just over a month older than Playette. I came across the family's blog when I was still coping with Playette's dx and I immediately identified with this mom of a little girl who reminded me so much of my own. I'd been hoping that these girls could meet for quite some time. And then it happened.

After initially checking each other out like rival greasy dancers on the set of the "Beat It" video, Playette and Ruby came around and decided to be besties for the duration. Success!

Since we're become friends, the Z fam has grown and, while I was so excited to meet everyone, I was especially looking forward to a hug from Lilya, their newest addition, home for nearly three months now after her adoption from an orphanage in Ukraine. Lily has left an impression on us for sure. I've been home for 24 hours now and I find myself answering questions with her trademark "Dahhh" ("yes" in Russian) and Playette spent the evening asking "uuuup?" just as Lily likes to play.

There's something about being a part of something larger, y'know?

I don't have a big family and whenever I'm around one, I just feel like I want to make myself at home. There's always something going on.

Other than laundry and dishes, I mean.

We played indoors and outdoors. We saw Rachel Coleman speak about her experiences raising her children. We ate friend cheese curds (and ice cream, fruit fluff, pizza, fudge, chocolate chip pancakes, etc. All organic. Ha!). We walked in the first annual Ds Awareness Walk for that area. We saw our kids perform on stage with Rachel during her Signing Time concert. We went wine tasting - in the living room. We laughed. We cried. We shared.

It was a time that I'll never forget and I am so, so grateful for my friends.

We've really met some wonderful people on this Ds journey we're on.

Will we go back?

Dahhh.

Pictures tomorrow...

Awareness Hair

Check out Playette's 'do from Saturday.

I hadn't planned it like that, but, hey, we're all about being festive over here. She was also giving me a lot of grief about doing her hair that day so I knew I'd be keeping it simple.

So yellow and blue adorned puffs it was.

In case you didn't know, the Ds awareness colors are those very same ones.

Interweb Gem

While recently battling insomnia, I was introduced via YouTube to MattyB, a seven-year-old rapper. After watching a few videos, I think he's a cutie and he makes me smile, thus melting my icy cold heart.

Even better than his rap over "California Gurls" is this tribute to his little sister:

Driving Miss Crittle

Playette and I hung out at one of the coolest parks ever today.

She really enjoyed "driving" me around and doing the "beep beep" on the horn.

Some other stuff happened at the park, too, but, hey, it's 31 for 21, so I need to space out the goodies a bit. ;-)

How do you know?

I had a great night tonight, but I'm going to let it marinate for a little while and write about it in a bit. So much to say!

In the meantime...

If you're the parent of a child with Ds, you may have asked yourself at some point, especially if you're a first-timer like me, "Is this a developmental stage or is this the Ds?"

I mean, of course I do that with things like speech and behavioral issues, but this other one...this other one I can't help but wonder if it's attached to the extra 21 or not.

Door closing.

Playette cannot function with an open door. If she wakes up from a nap and her bedroom door is cracked, she doesn't come out and greet the world refreshed. Nope. First, she has to close the door. Then, she'll come back and open it.

I've heard other parents of kids with Ds say the same thing.

But do 46ers also sometimes do it with the same conviction?

Is it a common 3 year-old thing and I just don't know because I've never had another 3 year-old?

So, regardless of what experience you've had, what say you?

I'm really curious about this one.

Are obsessive behaviors common in people with Ds, regardless of the age?

Hm. Now that I think about it, I do recall seeing that Monica, from the documentary Monica and David, had to have things just so. Is it a matter of routine and being in control?