Spread the Word to End the Word

I won't preach to much but today is "Spread the Word to End the Word" day.  A day designated by an organization determined to remove the word "retard" or "retarded" from acceptable language to bring to light the reasons why it is hurtful to families of people with disabilities.  I'm not an overly politically correct person.  I understand that people do not mean to offend me or Cate when they say "I'm such a retard" after doing something stupid.  But here is my reality - I have many pieces of people from doctors or the government that says Cate has a diagnosis of "mental retardation".   It of course totally unrelated to who Cate is - because she is joy, sunshine and mischief not a diagnosis.   But all the same this diagnosis is a fact, it is not a perception.  When I read or hear the r-word I cannot help but think of the day that I will have to explain it to Cate - its is that simple - I can't stand listening to a word that will ultimately hurt my daughter.  It is part of our current culture and it is everywhere - I read it in a book just yesterday where a police officer character used it to describe his clothing, I heard it in a live comedy show last week multiple time, I've seen it on facebook too many times to mention and its in so many movies I couldn't list them all.  So regardless of if you think I "need a thicker skin" or "shouldn't take it personally" - I do take it personally.  When I started my current job, I heard it all the time.  Each time I heard it my heart would constrict and a couple times in more descriptive cases I even cried.  So finally I said something - almost everyone in the office understood immediately and since they all love Cate they did their best to remove a word they used without thinking from their vocabulary - at least at work.  Even the person who was resistant saying "it has nothing to do with Cate" finally relented.  In the last year I think I've heard it one time and I'm incredibly grateful.  So I feel in a tiny way my speaking out made a difference.  So please gently mention it to people who use it in your presence or call them out on facebook when it is appropriate (and I know it isn't always  the right time to say something) because it needs to be stopped.   Take a look at this video and visit http://www.r-word.org/ to see other information on the fight to spread the word to end the word.

Kindergarten Math?

I am constantly surprised by the learning standards in kindergarten. Of course when I was in kindergarten 100 years ago the main subjects were recess, story time, nap time and snack. I couldn't believe it when I found out Cate would have to be able to read 50 sight words by flashcards in under 2 minutes by the end of the year now but she will be able to do it (she has 42 down pat & is working on 6 new ones - I promise a new video as soon as we hit 50!).
Cate's teacher gives the class homework each night Monday - Thursday. They are usually a single page worksheet that focus on writing or math concepts.  As expecting her class had been doing beginning math concepts like patterns, shapes, counting and coins. This assignment caught me off guard though -

ADDITION - really??  She did this assignment pretty much on her own.  She wrote all the numbers with no help.  The first two she got without even a pause.  She got the third one after a little thought and the last one after I talked to her about the problem.  As I've said before - Cate will learn what you teach her and her Kindergarten teachers are awesome!!!

A Special Needs Pass at Disney?

Before we left for our winter break vacation in Florida, I was talking about going to Disney with the mother of a child Cate's age with DS.  She asked me if we were getting a special needs pass there.  I knew one existed but hadn't really thought about it or even looked into the specifics.  My immediate response was "No, Cate doesn't need it - she can wait like all the other kids".  Well the reality is Cate is not like most other kids and she can't do Disney the same way everyone else. 

Disney is extremely loud, but it is so exciting that you might not have even noticed it unless you've looked at it though the eyes of a child sensitive to noise and crowds.  We go to Florida just about every year and up until this trip we had decided Disney would be too much for Cate.   We came to that decision in prior years because my parents did a recon mission to Disney and were amazed at the noise level.  They looked at it though Cate's eyes and saw the chaos in the lines, the volume level of the parades and shows, and just the general over-stimulation and knew it would be too much.  For example, the line to the Pooh ride has an area in the middle where kids can step out play on a whack-a-mole game and a set of drums among other things.  Add the noise of the excited kids to those things and even my parents couldn't wait in line for 20 minutes.  Fast forward to planning this year's trip, now Cate is 6 and things are somewhat different with her.  This year when we went to the outdoor concerts, instead of sitting close to us and seeming a little uncomfortable with the volume, she was pulling her daddy onto the dance floor the minute the music started even though it was so loud up next to those speakers you couldn't talk and so crowded sometimes it was hard to dance.

     

As you can see from the pictures she is not scared in this situation anymore so we decided that it was an indicator along with her obsession with all thing princess that now was a good time to give Disney a try.  Now, I have no idea if her sensitivity to sound and crowds has anything to do with Down Syndrome.  Truthfully Lucy is sensitive to those things as well but she is only 2 and already seems to be growing out of it.  So I have assume there is some relation because just about everyone I know from our playgroup says their child has some reaction to new situation when there is either a noise or lots of unfamiliar people. 

So back to the question from my friend - I think I said no to the pass because we work so hard at helping Cate to fit in to a typical kindergarten and experience the things other 6 years olds do, that in my mind maybe using special needs pass somehow went against those efforts.  When we got to Disney my mom was buying tickets at the front gate and Cate was with her.  The very nice lady offered my mom a special needs pass after seeing at Cate.  My mom said no we didn't need it but the lady gently pressed by saying the simulation at Disney can be overwhelming so why not take it just in case and if you don't need it then fine.  So my mom said OK.  This Disney employee was a life safer, because of her our trip was so much more enjoyable.  Within a couple minute of entering the park we were in the middle of a carnival type thing going on by the castle and Cate was insisting she wanted to go home.  She made it through the first fast moving line at the Its a Small World ride and she loved the ride.  But by the next line she was saying she had to go potty and that she wanted to go home.  After hearing this again in the next line we decided to use the pass for The Winnie the Pooh ride since we knew the line was chaotic as I described above.  The special needs pass works just like a fast pass on any ride that has a fast pass line.  So it doesn't single you out as "special" or mean that you don't have to wait in line at all.  As far as Cate knew, she wasn't receiving any special treatment.  What it did mean was that the longest ride line we waited in was 15 minutes or so and Cate was able to do everything we thought she would like with the least amount of stress.  After a couple shorter lines and fun rides, she had stopped asking to go potty and only wanted the next adventure, not to go home.  She even was still ready to go after doing the Peter Pan ride which she did not like because of how dark it was inside.  The only thing she could still not handle was the "theatre" type experiences.  She gets really stressed out when they take you from a rope off line, to a huge crowd waiting for the theatre door to open.  So she didn't see the Micky 3D movie and we ended up leaving the Bugs Life movie at Animal Kingdom within the first two minutes.  Beyond those two missteps she had such an incredible time.  Animal Kingdom is a much quieter park and the pass was more of a habit then a necessity for the couple rides we did at that park.  Both Cate and Lucy loved the Tea Cups, the Aladdin Magic Carpet ride, the Prince Charming Carousel, and Animal Safari.  But Cate's favorite thing was absolutely meeting the princesses and the "Dreams Come True" parade.  It was amazing but almost every princess noticed her at the front of the crowd, gave her a special smile and blew her a kiss.

After we got back I posted on a Down Syndrome message board about how much the pass had helped us.  All of the feedback was positive and the ladies who didn't know about the pass seemed happy to learn the specifics.  There was one comment that really hit home for me ..

...people with disabilities BELONG here - NOT because they can "keep up" or "pass" as a typical child or meet some kind of minimal test (can she act like everyone else?).  They belong because they are people and a valuable part of our society.  They should be included - and that means if they have DIFFERENCES that interfere with their ability to do what others do, we give them what they need to be included.  This includes a special bus if needed, an aide in school if needed, modifications to a curriculum if needed, extra therapies if needed, a disability pass at an amusement park if needed ...

The experience with the pass and thinking about her comment has me reevaluating my opinions.  I know without a doubt that Cate is a value to society - even at Disney she made people smile and that is something special.  I need to be more open to circumstances where the "special needs" path is the one that makes her most valuable to the situation whether it be in school or in a public place.  Sometimes because of the challenges she has, Cate will need more help and that is OK.   My favorite message board's slogan is "Just As I Am".  I know that Cate is amazing and perfect just as she is and getting some extra help doesn't change that.  so next time someone asks me if we are going to get a "special needs pass", I'm not going to say "no" without thinking about it.  I don't ever want Cate to miss an experience like meeting the princesses at Disney, which without that pass we never she would never have been able to do at 6:00 pm after a full day of fun just because I don't consider all the options.

Quotes of the month

** sorry still no vacation pictures, I forgot to put them on my memory stick so they are still in FL on my mom's computer/camera. I'll get up a Disney post as soon as she emails them to me. Until then here is the post that should have gone up while I was on vacation but I didn't set it up right.

Some memorable quotes from my kids from the last couple weeks:

Cate - "Mommy can I have more meat?"
Mommy - "You've already had three helpings I think that is enough"
<< 10 second pause>>
Cate - "Mommy you focus on eating your dinner"  "Daddy can you get me some more meat"

Cate & Lucy fighting over which CD to listen to in the car:
Mommy - "If you girls don't stop fighting I'll turn the radio off"
Cate - "Mommy that is not one of your options" 

Cate (at dinner out of the blue) - "Lucy is in charge"
Mommy - "No, daddy is in charge"
Lucy - "Daddy is pudding, Mommy is macaroni and cheese, Lucy is in charge"
(I assume Cate is getting the "in charge" from school but how does Lucy know what it is or does she think its food?)

Cate (in the car a week+ after the tooth fairy came) - "My tooth fell out"
Lucy - "Let me see, let me see"
Cate (both hands over her mouth) "Nope"
Lucy - "I'll be your friend again"
Cate - "OK - look"
Lucy - "Cate that's COOL"

We were in the car talking about the number of days until vacation:
Cate - "I have a plan, lets pick up Lucy then go see Uncle Lane now"
Mommy - "We can't Cate, it will take all day to drive there"
Cate - "Mommy we should fly in an airplane.  Airplanes are fast"
Mommy - "Very smart Cate, airplanes are much faster, but it costs a lot of money to fly and we will need our car there."
Cate - "I'll buy the airplane tickets, I have lots of dollars"  (how sweet is that???)

Disney

Posting from my iPhone so this will be a short on before Ric & I sail into the sunset for a kid-free weekend!
The girls loved Disney for the most part, more on that later. The Dreams parade, meeting the princesses, tea cups and the safari were the biggest hits. Sorry I can't get my iPhone to load a picture - anyone know how? Promise lots next Monday! Well I'm off for 3 days without a phone - what a foreign concept!

Gator Alley

Unfortunately we brought some cold wind down with us to the Space Coast.  The girls were able to go swimming yesterday but today its only 62 degrees so no swimming.  We decided to take a drive out to alligator alley to see if we could spot anything interesting.   The first five minutes of driving on this tiny little dirt path through the marsh had us wondering if we'd see more than a duck.  Then daddy spotted the first little alligator hanging out in the water.  After that it was one sighting after another!! I think we saw like 8 different alligators of all different sizes.   There were lots of water birds including a huge heron. We also so about 200 ducks floating in a group which was pretty neat.  Grandpa remembered the binoculars and Cate was fascinated by them. 

They were self focusing so she was actually able to use them  - or at least she said she could see stuff!!!  Lucy napped through the bulk of the ride but awoke right at the end to use this guy -



We also took a golf cart ride on the nature trail and hit the jackpot with a herd flock gaggle bunch of wild turkeys and three huge turtles.  Cate is definitely a nature girl - she was as happy with our adventures today as she was swimming yesterday.  (And yesterday she was impressing all the neighbors with her awesome swimming!!! It is crazy how much stroke progress she has made after only 2 swim practices!!)

Fingers crossed for a successfully & wonder filled first visit for the girls to Disney tomorrow!

Vacation

I had great intentions of doing a lovely blog with lots of pictures today and getting some new stuff ready to post for next week but since it is almost midnight and the car isn't packed yet, I guess I was dreaming!!!
We'll be basking in the sunshine (fingers & toes crossed) by Sunday so I'm not sure if you'll see any thing from me for the next week but I'll try.  If not I promise lots a fun vacation pictures (maybe even one or two with a princess or mouse) and stories of our perfect traveling children (wishful thinking helps right???).
Wish us safe travels and good weather!!