Thursday, March 31, 2011

Tim Shriver

My very least favorite excuse when someone uses the word "retard" is "I didn't mean it that way."  No matter how you  meant it, the word means what it means.


Tim Shriver appeared on Stephen Colbert last night.


"I didn't say you cannot use the word: I don't want to be a cop, I want to be a teacher. you're allowed to be humiliating, degrading and hurtful. I'm allowed to petition you to at least recognize what you say & be aware of the option you have to stop...I'm asking you for social awareness for a forgotten population. this is a campaign to save America's kids" ~ Tim Shriver

You can watch the full interview here.

Tuesday, March 29, 2011

Also, Today

On Tuesday nights, Karly has swimming at our local Y. She enjoys it -- and I do, too. I bring a book or my laptop -- our Y has free Internet, so I can get caught up on emails.

Tonight, though, I sat next to the most obnoxious group of boys. Four teenage boys, vulgar & crude -- teasing about girls, joking about masturbation, harassing the one boy's sister when she came to ask him for money. Really crude, obnoxious language & behavior for the local Y.

I thought about going to the desk -- but what do you say? I mean, this is a family place, there are children all around -- but what are the desk workers going to do?

And then, I heard it. After listening to them for 15 minutes, I wasn't all that surprised when I heard that something "was retarded", and then someone was called "a retard."

And that's when I stood up, and willed my hands to stop shaking, and I went from my table, to theirs.


"I just want you to know, I have two daughters with Down syndrome.

It's bad enough sitting here, listening to your conversation -- because everyone CAN hear you -- but then to start saying "Retard"? Well, I had to say something. I hope you're impressed with yourselves, because no one else is."


And, I looked at them, I made eye contact. I used to be a teacher -- teenage boys don't intimidate me. I didn't want to be some crazy lady yelling at them at the Y ... I wanted to be heard.

How can I advocate for other children every day, and then not advocate for my own daughters, in our community?

To their credit, they didn't get snotty, they didn't smirk. I went back & sat down, picked up where I left off on my computer, pretending I didn't know my face was turning beet red. They had a quiet conversation, "Who said it?" one boy asked. I know, I KNOW, that our local high school had a "Spread the Word" day recently, and programming about not using the word "retard". And also to their credit, they left the area, where they really didn't belong amidst all the families and little kids.

(and the best part was the lady across from us, with her two elementary aged children, "Someday, when you're teenagers, that is NOT how you behave.")

(I take that back. The best part was I said something, and I didn't cry. Or make a scene.)

Reece's Rainbow

Obviously, I'm a little involved with Reece's Rainbow.  We found our daughter Lilya on the Reece's Rainbow website.  For the past 6 months, I've been the donation coordinator.  It seems to be seeping into my Facebook A LOT -- and more & more now onto my blog.


The Reece's Rainbow community has had some hard hits lately.  Little Kiril's family went to adopt him, and the judge said no.  The family is appealing -- there's hope! -- but there are also two families in line to adopt children with Down syndrome in that same region, with that same judge.  This is about one sweet little boy with Down syndrome, but it's also more than Kiril, it could possibly affect the adoption status of 100's of special needs children.

Then, there's little Carrington who came home at 3 years old and ELEVEN pounds.  I've actually met children from this same orphanage, in real life.  They were tiny, but healthy.  So why was she in such poor condition?  Not a question that will ever be answered, I'm sure - but she is getting the medical care she so desperately needs.

One of our families was on their way home from visiting their child overseas and their airplane caught on fire!  A connecting flight within the US ... thank goodness it was just after takeoff and they were able to land safely.


But today!  There's some fun & happy news!  Actress Patricia Heaton contacted Andrea of Reece's Rainbow -- she's got a challenge for us!  If we get 10,000 followers on Twitter, she'll donate $1 per follower -- $10,000!

So if you're on Twitter, please follow Reece's Rainbow!  @ReecesRainbow  on Twitter.  Spread the word!

Now, if you'll excuse me .... I have to go open a Twitter account!  

(Can someone send me directions on how to tweet!?)

Ru's New 'do

I couldn't take it anymore. The snarls ... the weeping when the comb came out ... the refusal to keep a pony tail in.
 
So yesterday, after we sent Lily off to school, I brought Ruby in for a haircut! We went to the local place that does only children's hair -- and we saw Ruby's friend, Noah, too!


Ruby got to sit in a pink airplane for her haircut


She did great! She didn't even mind the dryer ... and she was definitely a fan of the mirror (as you can tell). At the end, the hairdresser asked if she wanted some pretty glitter, and Ruby pointed at the glitter bottle on the end and said, "Green!" I was so impressed with her -- sometimes it's hard to tell what she knows, because she doesn't like to name things on command. She definitely knew she wanted that green glitter, though!

Monday, March 28, 2011

Saturday, March 26, 2011

Emily & Miranda

I don't think it's any secret that I have a soft spot for the older girls listed on Reece's Rainbow. 

Sometimes I think, if my dad wins the lottery (because I don't buy tickets), who would we adopt?! 



Both beautiful girls, desperately needing families.  But, thinking about older girls makes me want to share a story with you.

The Egan family is in the process of adopting 8-year-old Emily.  Emily is in the same country Lil is from, and they are hoping to travel soon -- like, within the next 2 months.  Earlier this winter, the Egans received updated pictures of their new daughter -- but most of them were not of just Emily.  The pictures were of Emily & her best friend, Miranda.  

The Egans were torn -- how could they take Emily away from her best friend, and leave Miranda behind?  But how can they adopt TWO children, when they didn't have all the funds yet for Emily's adoption?

They discovered that in this country, you can adopt two unrelated children, from the same orphanage, for an additional $4000.    That's it.  Once you pay all the fees for the first child, there's only about $4000 to bring home a second - including their paperwork & ticket home!

And, wouldn't you know it, dear little Miranda had a grant available to her -- about $3700.  

So, the Egans are bringing home Emily, and then bringing home Miranda -- for no additional funds.  Miranda's adoption fees are covered by her grant.

The BEST part is ... 
Miranda & Emily, these two best friends, will be sisters in their new life.

PLEASE considering helping the Egans, if you can.   They are still raising funds.  Adding Miranda to their adoption did not add any more expenses -- but adoption is expensive in the first place!  These girls are both almost 9 years old -- this is an amazing chance for them, to get a family, together.

You can read the Egans' blog, and if you feel so inclined, you can make a tax-deductible gift directly to them through Reece's Rainbow.  Let's get these beautiful sisters HOME!

Wednesday, March 23, 2011

Secret Agent ... ish!

We had a big storm last night - it was snowing, then raining, then a ton of heavy wet snow -- with a thunderstorm!  Seriously, it was snowing, and thundering & lightning.  Quite the crazy storm.

This morning, Brian went out & started plowing, shortly after 6:00.  Around 6:30 the phone rang -- the automated call from the school district telling us school was canceled.  

I went outside & turned the lights on & off to get Brian's attention, then signed "no school" -- and that cracked me up!  I was so impressed with my stealthy self ..... until Brian reminded me that ASL (American Sign Language) is not exactly a secret language.  

Still, it is pretty darn fun!

______________________

And, I don't want to jinx anything ... but I just want to mention that today may have been the best day ever* for potty training two certain little girls.    

*so far!

Tuesday, March 22, 2011

If you're so inclined...

My new stalker friend, Patti, interviewed me for her blog.

I know my blogging has been less than prolific lately ... so if you want to read me ramble on, go visit Patti's interview. 

Or, just go visit her blog & see pics of her beautiful little Lily!

Celebrate!

Last night, our local Down syndrome group had a party at Wild Air to celebrate World Down Syndrome Day.  We had over 20 families in attendance, and over 50 kids!!  It was really nice, especially because we had rented the place out on a night they're not usually open, so we had the place to ourselves.

Yesterday morning, Braden & I were talking about the party and how it was with the Down syndrome group.  He said something about how "not many families have TWO people with Down syndrome" -- not that it bothered him, it was just an observation.  But, we decided we were very happy that Ruby & Lil have each other, because they really are such good friends (most of the time).


In a time when termination rates of babies with Down syndrome are creeping ever higher in that 90th-percentile...  it's important to celebrate our children with that extra little chromosome.  

That, and our group is just full of awesome people!


Lil started out cautiously ...

taking it easy, asking for help on this small slide.

But by the end of the night,

she had gone up & down the BIG slides,

all by herself,

many, many, many times!

Of course,

Ru was not going to be left behind.  She's a climber from way back ...


my little daredevil.

Look!  The girls in the same place for one moment!


I love this one ... Lil, mid-jump, while Ruby watches approvingly.

Saturday, March 19, 2011

Hide & Snack?

When Brian got home from work yesterday, I had a new story for him.

"We lost a grilled cheese sandwich today."

Lost?  Indeed!

The kids had a half-day of school, so Karly & Braden were home for lunch.  I made grilled cheese sandwiches, and Braden asked for his to be cut in 3 pieces (he likes to challenge me).  I cut it into 3 odd-shaped pieces ... and he ate one.  He had too many side dishes, and filled up, so he put his sandwich on the counter.  "I'll save it for later!" he said, and he went to the bathroom.

In the meantime, the girls were done eating lunch & running around, playing.  When Braden came back in the kitchen, he said, "Mom, I think Ruby got my sandwich!"  Sure enough -- the plate was empty.

The thing is, this was only like THREE minutes!  I thought for sure she put it in the garbage, or the sink ...nope.  Just an empty plate sitting on the counter & no clue where it went.  (Lil was in the living room the whole time, that's why she's not the culprit....)

Ruby's never eaten a sandwich that wasn't cut up.  We did a thorough search of the main floor, and the best we can figure is she took both pieces, and she & Lil each ate one.  Very quickly.

Or ... in a few days ... we'll be walking around saying, "What's that smell!?"


ps -- I'm quite certain now that Ruby did eat at least one of the pieces.  Tonight for dinner we had pancakes, and Ruby REFUSED to let Brian cut hers up.  She picked it up & ate it like a giant cookie.

Tuesday, March 15, 2011

Down syndrome is NOT a disease

Down syndrome test breakthrough 'on the horizon'


How is a this a scientific breakthrough?  Do we really have nothing better to research?  And how ignorant do you have to be, to study Down syndrome, and yet continue to call it a 'disease'?

I feel like it's one step forward with advocacy ... and then science pushes us two miles back to ignorance and fear.

Thanks to Michelle @ Big Blueberry Eyes for posting this -- she made some interesting points, so pop over & read her post.  

It's definitely interesting to think about.  I know how general society often views our kids with Down syndrome, but shouldn't the scientific community be better informed??  No wonder the termination rate is in the 90% and climbing...

Thursday, March 10, 2011

Another Ruby Story

Ru returned to school this week -- after missing two full weeks with her 2nd round of strep and then the flu bug she had.  Tuesday, she was SO excited when I asked her if she wanted to go to school!

After school, when the bus brought her home, she was just as excited.  I was unbuckling her, and she said,
"I go school!" and she signed 'school'.
"I eat snack!" and she signed 'eat'.
"I eat cereal!  candy!" and she signed 'cereal, candy'.
"Milk!" and she signed milk.

ALL this, before I even had her off the bus, in her very fast, chatty little voice.


When we took her papers out of her backpack, her "Today at School" note said they were studying colors -- and had a snack of Fruit Loops & M&Ms - with milk!

It's nice to have the note that comes home & tells me about Ruby's day ... but it's even better when Ruby can tell me herself!


____________________________________

Ruby loves playing with these little unicorns lately ... especially when her big brother will humor her and play, too!





The unicorns are cute, but I'm partial to the zebra that had a cold ... she kept asking us for kleenex to wipe his nose!  He must be feeling much better this week, so she's moved on to the unicorns!

Tuesday, March 8, 2011

Little Moments

Ruby & I often run errands right after Lil goes to school.  We've already got our shoes & coats on, and it's a real treat to go out with only one child!

Monday, we ran to the grocery store to pick up one item for dinner ... which turned into 3 bags of groceries, but that's how it works, right?

At the end of an aisle, they had these little mini basketballs.  I picked one up & gave it to Ru, which she promptly threw - sideways.  I was prepared for that (I know her well!) and caught it, bouncing it back to the basket where it came from.  I said, "Good-bye, basketballs!" and started pushing the cart away, back to our shopping.

Ruby looked at me, grinning, and signed "Fun!"

I said, "Was that fun?"  And she said, "Yeah!"  and again signed "fun".

Sign language is awesome!   Here I was thinking she'd be bummed that I put the ball back, and she was just happy that we picked one up in the first place.

Monday, March 7, 2011

Swim, little fishies!

Today, the girls started swimming lessons!

I signed them up at the YMCA for their special needs swimming private lessons.  After many, many phone calls with the aquatics people, I signed them up for a semi-private class -- which means it's just the 2 of them in the class.  Since we are able to go during the school day, they got right in (there's usually a waiting list for private classes on nights & weekends).

I volunteered to get in the pool with the girls and the teacher.  Really, why not?  I'm going to be hanging around anyway, and there was some concern about if Ruby was even tall enough to attend a class on her own.  She is just BARELY tall enough.  If she's not attentive, she gets a mouthful of water.

We had an apprehensive start -- I mean, really, Lilya has NEVER been in a pool before, in her life.  But she sat on my lap at the side of the pool and we splashed a bit, and once I went in, she came right to me.

For our first week, I think it went just swimmingly ;)

The toughest part was getting two cold, wet wiggly girls (and myself) dressed quickly afterwards -- but luckily we were able to lock ourselves into a family changing room (with a step stool!  Where a wet Ruby discovered she could stand & wash her hands!)


I gave up my swimming class on Mondays to make this work, and I swear this is just as much of a workout.

Sunday, March 6, 2011

Please Help Bring "Aleksey" Home

Our local friends, Ruthann & Mark, are adopting a little boy from Eastern Europe -- please help us raise funds to help them bring him home!

Please come to an Open House Thirty-One and Scentsy party on St Patty's Day!  
(Party is at my home, or shop online by 3/20!)  
Stop in between 6-9:00pm for snacks & shopping!

Wear green or bring a guest and you could win a prize, too!


Also, you can shop online from both Thirty-One:

http://www.mythirtyone.com/shop/eventhome.aspx?eventId=E570957&from=MYEVENTS

and Scentsy:

https://branditrace.scentsy.us/Buy?partyId=29303328

Please let me know if you have any questions or need directions! Hope you can join us & help us raise money to bring "Aleksey" home!


Also, please consider a donation to their family grant at Reece's Rainbow -- even if you can only give $10, it really helps!!  

Thanks!

Wednesday, March 2, 2011

03.02.11

To learn more, CLICK


from the r-word.org website:

The R-word is the word 'retard(ed)'. Why does it hurt? The R-word hurts because it is exclusive. It’s offensive. It’s derogatory. The R-word is hate speech
How "retardation" went from a clinical description to a word of derision
When they were originally introduced, the terms “mental retardation” or “mentally retarded” were medical terms with a specifically clinical connotation; however, the pejorative forms, “retard” and “retarded” have been used widely in today’s society to degrade and insult people with intellectual disabilities. Additionally, when “retard” and “retarded” are used as synonyms for “dumb” or “stupid” by people without disabilities, it only reinforces painful stereotypes of people with intellectual disabilities being less valued members of humanity. 

Sickies

Here's hoping March brings us better health.

Ruby & Braden are on their second bout with strep, and now they both have an added on virus.  I think Braden missed more school than he attended in February... Ruby, too, for that matter, but she only attends twice a week, so that's not that many days out.

I do not handle it well when Ruby is sick.  I mean, I don't like ANY of the kids to be sick, but especially not Ruby.  Because she's the baby?  Or because we already lost her twin?  I'm not sure.  We didn't have a chance to even TRY to save Lydia, she was just gone -- so maybe we go overboard with Ruby when she's sick.

Still, Ruby gave us a good scare this weekend when she started limping and saying "Ow" with every step.  Step - ow; step - ow; step - ow ... then she'd ask to be picked up.  This, after running a fever for ohhh, about a month.  (I know if I stopped this story here, I'd get 20 emails today from DS mamas asking if we had her bloodwork checked -- we did).

See, our children with Down syndrome are at a significatly higher risk for having leukemia (1 in 300, I believe - compared to 1 in 10,000 children who get cancer in the general population).   Unexplained fevers, leg pains -- can be early symptoms.

So, I have to say, I'm much happier having two children sick, because if it were just Ruby, we would've had much bigger things to worry about.  Ruby's bloodwork is fine, and her leg was checked over -- and it's been declared she has muscle soreness, from prolonged illness.  Poor little dolly.

She's finally feeling better today -- she ate a few crackers & is playing a little, chattering away a little more.  Much better than the worn out, quiet little bird she's been the past couple days.

Hoping tomorrow Braden is well enough to return to school -- he seems to be a day behind Ruby with this latest virus.
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