Ru's New Look

Guess where Ru went today?

My big girl got her hair cut!

Every morning, when we comb out her hair, she would cry and carry on.  It was so very dramatic.  So, with warmer weather on the horizon - and knowing we have to leave my mom in charge of Ruby's hair when we travel - well, it was time to get it cut.

Seriously, could she be any cuter?  She looks like a micro-mini teen in these jeans!

So serious

And a peek at the back of her new 'do!

Standardized Testing & Special Education

Renee posted an interesting article about teachers getting suspended without pay for not administering standardized tests to their students. The students are grades K-5, with multiple disabilities, and cognitively are about 6 months - 2 years.

It's shocking to me that students with an IEP - an INDIVIDUAL Education Plan - would be forced to do this testing, without regard to the individual child's ability ... but then again, I'm not a fan of standardized testing to begin with.

You can read the full article online. I think every parent should read this - especially if you have a child with an IEP - and just tuck the knowledge away for someday that you, as a parent, can opt your child out of the testing. Just make sure you put it in writing.

Interesting - link between DS & Alzheimer's

There was an article online recently, about the connections coming to light between Alzheimer's disease, Down syndrome and atherosclerosis. It sounds a little out there, but the studies implicate damage inflicted by the amyloid protein as shared disease mechanism.

The article begins:

Nearly 20 years ago Huntington Potter kicked up a storm of controversy with the idea that Down syndrome and Alzheimer’s were the same disease. Now the evidence is in: He was right.

and then later says:

By age 30 to 40, all people with Down syndrome develop the same brain pathology seen in Alzheimer’s disease, including a nerve-killing buildup of sticky amyloid protein clumps. This contributes to accelerated nerve cell loss and dementia.

I've been meaning to post about this, but I wanted to wait until I processed it a little more and had something to add. I really still don't. It makes me sad, that this is probably inevitable, the detioration of the brain and onset of dementia in people with Down syndrome. Like, no matter how much we work with Ruby - and Lily - and no matter how far they are able to go ... their time is limited already? They have an expiration date?

Well, there's another reason to hope for a way to defeat Alzheimer's ... and really, isn't it nice that people with Down syndrome exist since their makeup is unique and could be fundamantal in solving so many medical mysteries? We learned last year that by studying people with DS, there may someday be a cure for tumors.

I've said it before and I just want to say it again - people with Down syndrome have always existed. They have value and worth, they are cherished by their families and truly, truly loved just as much as their typical siblings. When we say Ruby's awesome and we love her - we're not trying to make you believe it, it's true. We're choosing to add Lily to our family, because we have no doubt she'll be wonderful, too. Pity is completely uncalled for.

But, even outside of their families - people with Down syndrome make contributions to the world, just like everyone else. So next time you hear someone griping about how people with disabilities cause a drain on society and resources - well, you now have two medical studies to point to, but I'd rather you just kick those meanies in the shins and run away. (Ha!!)

Nostalgia

When I was a little girl, my favorite doll was a Raggedy Ann with yarn hair.  I used to suck on her hair - and to this day, when I see a Raggedy Ann doll with yarn hair, I know exactly what her hair would taste like (if it were chewed on for many, many hours).

Why am I blogging about my Raggedy Ann doll?

This is why. Grover!

Ruby got this adorable little Grover (with a handful of his friends) for Christmas.  Something about Grover, though, compels her to carry him around in her mouth.  She chews on his head - and she's drooling so much right now - so he's often got a wet head.  It's a nasty surprise if you're not paying attention when you pick him up.

The problem is, he STINKS!  The dampness is just not good for his fur.  But I can't wash him, and I can't Febreze him - she'd just be sucking on Febreze then.

I can't even consider taking him away ... because once upon a time, I was a little girl with a Raggedy Ann doll with chewed up yarn for hair.

Are you kidding me?!

I thought it was kind of outrageous when I heard recently about Virginia planning to rebuild institutions (Yes, for the purpose of segregating people with special needs) - but now I see where that drive comes from.

Here's the best part of Virginia Delegate Bob Marshall's interview with the Capital News Service (in an anti-Planned Parenthood speech):

"The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children," said Marshall, a Republican.

Of course, he's scrambling to apologize for his 'mistake', but I think it's too late to take it back.  Thanks to the Internet, this will likely follow him to the history books.  Asshole.  My children are nobody's punishment.

That Karly is an Enigma

Because it's always something with that girl, right?!

We recently discovered through some routine bloodwork that Karly's cholesterol is high.  Like, REALLY high.  I brought her in for fasting bloodwork this weekend, and yup - still high.

We're adding yet another specialist to her medical history, and we'll be taking her to see an endocrinologist at Children's in Milwaukee sometime in the near-ish future.

Most likely, this is a side effect of one of her other medications - presumably, the medication for her Tourette's, to decrease her tics.  If that's the case, hopefully we can try something else ... otherwise, if it's her seizure medication?  Well, that's harder to change.  It seems every time we tinker with the seizure meds, she has a seizure - go figure!


So, I'm sure we'll get it sorted out - and it's still nowhere near as scary as when she had cancer.

An Epic Tale

One adorable, super silly girl:

Plus one end table (sans drawer!)

equals one little shiner:

I'm not sure you can even see it, but there's a little purple puffy spot, just under her eyebrow.

Poor Ru was tired today as lunchtime & naptime were approaching, and she tripped and bumped her face into a table leg. She's a trooper, though (and honestly, the dry skin on her face looks worse than her bruised eye).

Right now, she & Grover are serenading me on the piano - glad we didn't sell it!  She makes such beautiful music!

Tiny Growth

Last week, Ruby had a WIC appointment. WIC is a program that provides milk & healthy foods to Women, Infants & Children. Ruby has secondary insurance through the state, called Katie Beckett. One benefit of Katie Beckett is children under age 5 can also get WIC. The people at our local office are very kind and friendly; we've had the same nutritionist since Ruby was born, and she's always so pleased to see how well Ruby is doing.

This past visit, Ruby needed to go with me for a little checkup. She was super! They poked her toe for an iron test; she didn't shed a tear and her iron level is great. The fun part, though, was when they measured her - she's now about 25 lbs and just over 31 inches. Since the last time she was at WIC, 6 months ago, she had gained about 1/4 of a pound and 1/4 of an inch.

I guess that counts as growth!?

That little amount of growth cracked us up. We aren't worried about it (because it's WIC & not the pediatrician, so we go by the doctor's scale) and really? She is small. We just put her into 18 month clothes a couple months ago - and sometimes she still trips over the pants. She's healthy, she's a good eater, she's busy-busy-busy, she loves to pretend play with her toys. She's just petite!

We are still monitoring her thyroid, but so far it's still within range where she doesn't need medications - thyroid issues, (either hyper or hypo) are common in people with Down syndrome.

It's an amazing change from when she was an infant & we were obsessed with her growth - the county nurse used to come out & weigh her weekly!

Fundraiser for Zhora - win an iPod!

There's a little boy named Zhora at Lily's orphanage who still needs a family - and right now there's a fundraiser going on for him. Hopefully, this money will help a family bring him home.

It's a giveaway for a NEW 8GB 2nd Generation iPod Touch! All money goes directly to Zhora's Reece's Rainbow Account. Donate $10 and you get one chance to win... $20 is two chances to win or $25 is three chances to win!

Please, VISIT HERE to read more and to enter!

Happy Valentines to You, from Ru!

Lots of hugs & sloppy kisses!

Toes!

 

Ruby has the cutest toes I've ever seen - they're so teeny!

The other day, I took Braden to the eye doctor, and during the exam, while the doctor was looking in his eyes with the flashlight, Braden asked, "Can you see my cells?"  I had no idea where that came from.  (Incidentally, his eyes are great!)

Then last night, Braden starts talking about cells in a ladder - and Brian filled me in, all this science stuff was coming from his new CD/DVD that he got for Christmas.  Braden got They Might Be Giants, "Here Comes Science" - we already have their "Here Comes the ABCs" and "Here Comes the 123s" CD/DVDs and really like them.

But talking about cells and DNA ladders gave me a good opportunity to tell Braden about Down syndrome in a new way.  I said, "Do you want to know something really cool about Ruby's cells?" and told him about how almost everyone has 46 chromosomes, and Ruby has 47.

Brian showed Braden what Ruby's chromosomes look like on paper, and we looked at her hands - one of her hands has a palmar crease (a single line across the palm).  We looked at her tiny button nose, and adorable feet with the sandal gap (if you've never seen these features, you can check them out here).

Braden adores his sister Ruby.  It was interesting to him how she was a little bit different, a little bit special.  And, we talked about Lily having Down syndrome, too.  It was just one brief conversation, one blip - he didn't get hung up on it; because it's just a little part of who Ruby is.  Ruby has pretty hair, an adorable dance, and a wonderful mix of sweet and bossy.  Down syndrome is only a small piece of that.

I know he'll be a wonderful big brother to Ruby and Lily.  And I really dread the day when we have to explain to him what 'retard' means.

So Tired

I'm not sure why this is still an issue.  People shouldn't call people names - especially when those names insult and take away the dignity of an entire group of people.  And, honestly, I cringe every time I hear the word retard or retarded - no matter what the context.  Every single time - it's like a slap.  No matter how it's "meant" - it's mean and hurtful and demeaning to my beautiful daughters and our entire family.

Don't even get me started on Sarah Palin.  Here is someone in the position to make a statement that will be heard far and wide, to spread the reality of what it's like to have a child many people would fear raising and just don't understand ... and she blew it.  She reacted strongly to Rahm Emmanuel's comment (he used the phrase "fucking retards") and yet?  She gave Rush Limbaugh a pass when he threw the word retard around.  Because Rush was just trying to funny, you know?

Yeah.  Some things should be above partisan politics.

I've been reading lots of very insightful, well-put opinions on this topic.  This topic is (not surprisingly) flying around the DS blogging community.  If you'd care to hear more opinions than my rambling - Karly had a great post - including the point that it's ridiculous to censor f*ing and yet spell out retard - and since this is our children we're talking about, it really is worth the discussion.  Chrystal also brings up that this is about our children and the way people treat them.  And then, to finish it off - get all riled up with Jen.  Because, she, too, blogged about the fact that it's wrong an unacceptable to mock our children and use them as a punchline.

Do you kind of sense a theme here?

Don't use the word retard - or retarded.  It's NEVER funny.  No matter how it's "meant."


And, to see how someone in the public eye can use their celebrity status to make an impact and spread the word, check out actor John C. McGinley's article - and think about joining the fight to "Spread the Word to End the Word."  It's easy - just stop saying it.

Maybe I should get a watch?

Yesterday, I picked Braden up from school (usually Brian does).  When Braden walked into the hallway from his classroom, he was so happy - I thought, "Aww, how sweet!  He's so happy to see me!"

And then he said, "Mom!  You made it just in time!!"

Just in time?  So I ask him - just in time for what?  And he reminds me that last week when I picked him up, I was late.  It's true; he was sitting on the bench by his classroom, ready to go, swinging his feet.  "Mom!  You're LATE!"  "Well, I was here, but I was talking to my friend in the other hallway, and then the bell rang!" I was in the building, I was only late getting to his classroom.

So yesterday, he wasn't excited to see me - he was proud of me for making it on time.  Yay, me?

We're still here!

I've received complaints lately that my blogging is a little sparse.

Okay, it was really just my dad saying that, but it is true.

Really, there's not much going on here lately - and what little news we have hits Lily's adoption blog. But that's a pretty lame excuse; I mean I did blog every day for 2 years and we almost always found something to blog about ... guess I just need the commitment to force me to blog. Oh well, there's always 2011!

Well, thank you to those of you who continue reading even though we haven't had much to say ... and Look! It's us!

 

 

What's with my kids and 5:30 am?

Yesterday, Ruby was stuck under her bed at 5:30 in the morning.

Today, at 5:30, Braden was crying.

I went in to check on him, thinking he'd had a bad dream - and he says - still crying - "I want to go to Chuck E. Cheese."

"What!?  Were you dreaming about Chuck E. Cheese?"

"Noooooo!  I just want to go there!"

This morning I asked him again if he was dreaming about Chuck E. Cheese and he giggled, "Yeah!"

Good morning?

Ruby woke up this morning at 5:30, crying.

I went in to get her - and she wasn't in her bed.  She was UNDER it.

I had to lift the bed & move it, to get to her.  I have no idea when she shimmied under there; we checked on her before we went to bed.

Other than that - she's been doing great in her new little bed!  But it makes for a long day when she's up so early.

My boy, today

Brian asked the kids if they wanted to watch something after dinner - a real treat, since we don't usually watch TV on school nights.

Braden picked out Ratatouille ... and it made me think of how the movie used to make him cry.  He hated that the rat couldn't find his dad.

My little guy is growing up so much!