Field Trip Success!!!

Cate had her second successful kindergarten field trip.  Yesterday they went to the zoo - which of course is one of Cate's absolute favorite place.  Of course that made me worry more since she is so comfortable that she'd just wander off.  But our favorite Ms. L was there to keep an eye on her and said she did great.  She got All GREENS for behavior on her trip - YEAH!!!  She said she held hands and stayed with group.  She also demonstrated for Ms. L how she was going to sound when she grows up to a zookeeper.  Bet she actually does it someday.  Cate even learned some new things because that evening she was playing with a stuffed elephant and told daddy it was a "calf".  Since I'd totally forgotten that baby elephants are called calves I'm guessing she learned that on the field trip.

Sorry no pictures from the field trip but here are a couple from our family trip to the zoo last weekend -

Quotes of the Month

The best one started a while ago and now one that happens about every day -
Ms L (Cate's para-pro at school) at car pool for pick up: Good day today Cate, see you tomorrow
Cate: I'm not coming back
Ms L: Me neither (although the first couple times she said - of course you are)

In the car -
Lucy: Mommy am I am woman?
Me: No Lucy you are a girl still.
Cate: Mommy I'll be a woman when I can drink coffee, right? (even an odder thing to say since I never drink coffee)

Lucy: Mommy you aren't pretty, I love you. (mmm was this a sympathy I love you or does she not understand pretty is a good thing?)

Mommy: Cate how was school today?
Cate: Good, I got all greens!
Mommy: Yeah Cate, can I check your sheet?
Cate: Nope don't check mommy. (she of course did not get all greens - this is a frequent conversation these days!)

Girls in the car talking about the zoo trip last weekend -
Mommy: Cate, what do panda's eat?
Both girls: Bamboo
Mommy: What do elephants eat?
Cate: Leaves & fruit
Mommy: What do lions eat?
Cate: Kids

At dinner -
Cate: Everyone listen .....(silence)
Cate: Why is everybody looking at me?
Me & Ric: (silence), then laughter
After the laughter that ensued this is now a favorite comment at our dinner table by both girls looking to be funny.

Room to Play

I am so lucky to have a father can can do amazing thing!  Two years ago he took a little hill next to our pool and build it into an area big enough for a play set that Cate's Aunt Debbie & Uncle Kevin handed down to her.
She loved it from the first time she got to play on it:

picture taken of play set last week (that yellow stuff on slide is actually pollen - lots of sneezing going on here)

flash back to first time Cate played on play set - July 2010

How cute it that?  She has grown up so much in two years.

So a couple months ago Ric & I decided that the girls need more room to play.  We have some wooded space on a hill behind where the play set sits now.  After getting a couple quotes we took the leap and got the big pine trees and little scrub trees taken down and made into mulch.  And let me tell you those pines were huge - more than twice the size of the house and one of them I doubt two of us could have gotten our arms around.  But those guys climbed that monster and cut it down piece by piece.  The difference is amazing.  So once that wonderful grandpa gets back from Florida in a couple weeks hopefully the move of the play set to this great new space will commence.  I can't wait!  Our neighborhood is beautiful but very hilly with no cul-de-sac and not really conducive to kids running around it.  My dream is for the day when I can say "go outside and play" and the girls can (and want to) safely play without minimal supervision in our backyard.

future play set home with actual room to play!!!  Wouldn't a playhouse be great up at the top of that hill - hint hint grandpa.

they even saved the azaleas which are probably as old as the house (~40 years)!

What about having another baby after one with Down Syndrome?

The most repeated question on the DS message board I frequent is "What about having another baby after a Down Syndrome Diagnosis?"  And I totally get it.  A lot of the mother are way younger than me and their children with Down Syndrome are young as well so as much as they've accepted DS, they still have fears of the future.  Its so scary but so tempting to have another baby.  But for us, we just knew it was the right thing.  We knew Cate deserved a sibling and that any sibling would be lucky to have her for a big sister.  That didn't stop the worries from hitting me every once in a while - What if the younger surpassed Cate in school?, What if something happens to us and she has to take care of Cate?, Will I have time to give another baby the attention she deserves and still deal with Cate's doctor appointments and therapies?, Can I really handle a second child?, What if the new baby has DS too?.   I don't think anyone in this situation can help but have these concerns at some point no matter how sure they are they want the second baby.   It was also easy to bring myself back to reality and just answer my own questions - just like everything else regarding the future with Cate the answer is always:  Stop worrying about it until it happens - I have a great husband and we have an awesome support system made up of incredible family and great doctors, we'll figure it out.   Of course still worried, I was just able to talk myself out getting to stressed.  The one thing I know in my heart - Cate will never be a burden to her sister.  You can't spend anytime with Cate and even question that.  We will make sure to provide for her financially but if something every happened to us the person who takes over Cate's care will feel lucky not burdened.  Now if you don't know us than you might think - of course she has to feel that way its her daughter.  But its really not that, I'm a realist most of the time, Cate is just that great to be around.  I think everyone in her life would back me up on that, down to the teachers who have to deal with her stubbornness daily.

When we get posts asking questions about having more children after one with DS it is hard to answer them since it is such a person situation.  My favorite way is story to show how great Cate & Lucy's relationship is now.   Of course there are times when Lucy might get dragged to therapy or have to wait while I do extra work with Cate.  But what family doesn't have that challenge when one child does soccer and one plays softball and both practice on the same day?  Parents just have to figure stuff like that out.  As far as attention goes - Lucy ended up with food allergies and in some ways those take much more time to deal with then any of Cate's medical concerns.  I have to bake special cupcakes for birthday snack and plan what to take to eat for her if we go out to someone's house.   Having two little ones is not easy by any means but I don't feel like it is that much harder than just having Cate.  At least they can entertain each other and I'm forced to give them a little more freedom or responsibility.

At the delicate ages of 6 & 3 the girls are each others best friends about 75% of the time.  I would guess this is a pretty high stat for that age but never having a sister I can't be sure.  My girls compliment each other so well.  Lucy is an adventurer - climbs on everything, Cate is caution and always wants to hold the rail so between the two of them they make it to the top of every slide in town no matter how high the ladder.  Lucy picks things up really quickly, Cate has to figure them out but Lucy will watch Cate trying to do something without rushing her, in the meantime she learns it herself.  Cate loves to meet new animals & people, Lucy is caution around new people and afraid of new animals but she'll pet a dog once Cate makes friends as long as Cate stays with her.  They play together, make up games & stories together, fight, wrestle, and argue.  Lucy still looks up to her sister and they so love each other - that is evident and that I can prove.

Cate's birthday party - Lucy was nervous by all the new people and so Cate gave her a little sister time.

Lucy was terrified of Santa this year - she would only agree to a picture if Cate held her hand.

The two of them discussing how Santa might get to the cookies.

Pretending to be princesses together

Lucy learning to dance from Cate.

Making up stories at the zoo about being zookeepers and feeding the lions - wish these pictures had audio it was so cute.

Sharing the chair so they could steal some time watching the ipad together.

Bath time is one of their favorite play times!

They will even share their daddy - sometimes.

Playing together at Disney.

Cate decided on the pink ears so Lucy changed her mind immediately and wanted them too.

Lucy stopping Cate to show her their shadows.

running playing together

Cate was way ready to touch the sea creatures - Lucy got brave with her big sister leading the way.

This time I'm pretty sure Lucy distracted me while Cate took the ipad

Gotta love sisters!!!!

Comments!

So sorry to those of you who tried to respond to my begging for comment but weren't able to leave them! I never played with those setting. It should allow non-member comments now . Thanks!!!

3/21 World Down Syndrome Day -What can a child with Down Syndrome Do?

(I know I gave hints I was going to post about Cate & Lucy as sisters, but I'm not happy with it yet so keep watching!)

Today is World Down Syndrome Day.  An organization called Down Syndrome International sponsors this day to raise awareness - "21 March 2012 marks the 7th anniversary of World Down Syndrome Day and for the first time in 2012 this day will be officially observed by the United Nations. Each year the voice of people with Down syndrome, and those who live and work with them, grows louder.. " [Statement from their website]

Around the world there are events going on today to tell people the truth about Down Syndrome, to dispel myths and educate.  Babies born with DS are treated differently around the world.  Some countries accept them but too many still institutionalize them, some even let them die by denying medical care.  Fortunately the tide seems to be turning and worth of people with Down Syndrome is being recognized more all the time though social media and awareness campaigns like World Down Syndrome Day.

In a time of amazing medical care, early intervention therapy, and inclusion, stereotypes of Down Syndrome that exist here and around the world are the biggest issue our DS community faces today.  The incorrect view tends to be that all people with DS are the same because they share some similar issues and features.  Just like everyone else, their DNA makes them individuals who have very specific personalities and looks.  The myths create a world where people think they know what it means when they find out someone has a baby with Down Syndrome.  They think they know that child will always live at home, not be able to speak properly, might not read, will be overweight, won't get married, and will be mentally retarded.  But the reality is no one can know any more about a baby born with Down Syndrome then they know a baby without an extra chromosome.  A child with Down Syndrome still has potential just like any other child has - it may just take more work and have to be achieved in a different way.  So maybe a person with DS won't be a doctor but maybe they will be a medical assistant because they work so well with patients, are detail oriented and work extra hard to graduate from a degree program.  Maybe a person with DS won't  have children, but they might find love, get married, live a full life traveling and learning new things.  Truthfully can't you say these things about any baby?  We might like to think that our infants can grow up to be doctors or lawyers but in reality its just wishful thing because there is no way to know yet.  Then when those kids grow up to be stay at home moms and computer programmers, we are proud of them just the same.  When you have a baby with DS the doctors and book might tell you what all the things they won't be able to do but rarely do people other than parent groups tell you what they can do.

Cate is only 6 years old - these are a small taste the things she CAN do:

• Climb to the top of the biggest playground slide and go down by herself

• Go to our neighborhood elementary school in a typical kindergarten class

• Make friends with peers her age

• Make friends with any dog with in a mile radius at anytime!  She also can clearly ask a stranger for permission to pet a dog then says "thank you" without any prompting.
• Read 50 sight words!!!!!
• Identify all two and three dimensional shapes
• Write her name

• Identify all basic coins and their values
• Name all the seasons and months in a year
• Tell you her full name, address, city, county, state, country, phone # and planet
• Write every letter of the alphabet, upper & lower case (and most of them are recognizable)

• Color inside the lines (when she feels like it!)
• Tell you when you are going the wrong way to get to McDonalds or Chick-Fil-A from our house, her grandparent's house, school, therapy or the babysitters house (so much for that little errand I tried to sneak in)
• Jump off the diving board, swim unassisted across our pool

• Be on a swim team
• Help empty the dishwasher
• Feed the cat
• Use her manners
• Be very stubborn and pout with the best of them

• Throw a royal tantrum when she is tired and not getting her way
• Take a Dance Class
• Pretend to be a singer

• Make strangers smile just by turning the sunshine in her smile on them
• Give hugs that brighten your day

Aren't those the exact things you'd wish for your kindergartner? 
Spread the word on Down Syndrome Day because our kids CAN!!!

ps - I'd love some comments from my "virtual friends" about what your kids can do and from the one who know Cate about what your favorite thing she can do is!!

Preview video

Tomorrow is 3/21 which is World Down Syndrome day (get it 3 copies of chromosome 21 ;-)) and I'm working on a post about Cate & Lucy as sisters.  Here is a taste in a funny video taken around Christmas of Lucy singing a song she made up just for Cate!  This is rare capture of Lucy singing because normally if an adult looks at her she gets shy and stops.  You will probably have to turn up your volume because my sister in law took it with her phone (and if you are getting this by email you need to go to the actual blog to see it).

The reason why I blog about Down Syndrome

There are of course the obvious reasons that I write this blog -
> I'm completely and utterly proud of Cate & Lucy, so I want to show off
> My parents travel a lot and Ric's family doesn't live close by so it gives me a way to include them in our kids lives
>  I like to write and I'm inspired by the blogger moms who document their lives with DS

But the # 1 reason is the hope that just one woman who has received a prenatal diagnosis of Down Syndrome reads this blog, sees how awesome Cate is and it give her hope for her future or even changes her decision on keeping her baby.  Because I won't lie - getting a diagnosis that your baby had Down Syndrome hard, feeling like your world has ended hard.  The difference between mothers who have experienced this is how long that feeling lasts.  I was one of the lucky ones.  We didn't have a doctor tell us that Cate wouldn't have a real life - but I personally know people as well as having read so many stories of doctors telling parents exactly that, things like your child won't walk, talk, be potty trained.   Since my hospital experience was more about Cate's heart condition and less about her having DS, I moved past it more quickly than most, but not without a grieving process.  I've said it many times before - I thank god all the time that I didn't have to make a decision based on a prenatal test.  I'd like to think I would have kept Cate and been confident in my decision before she was born but I can't really know that.  I had no insight in the world of DS, no clue as to the awesome experience I was about to have, no idea that Cate would be as amazing as she is before I held her in my arms. 
If you aren't a big reader in the DS world you probably will be shocked to learn that internationally it is estimated that at least 90% of women who receive a confirmed prenatal DS diagnosis will terminate the pregnancy.  Of course that number only takes into account the women who elect for an amino or other test that carry a 1% chance of miscarriage, but still it is a staggering.  Now there are new tests that some medical scientist are saying could eliminate DS almost completely.  These new tests, like brand name Materni21, are blood tests that can be given early in pregnancy with high effectiveness and no risk of miscarriage.  The experts' anticipation is as the percentage of women who take the tests go up the number of pregnancies carried to term with Trisomy 21 will decrease.  The thought that many more people giving up on a baby who could be like Cate breaks my heart.  I can understand the fear - "can I handle a special needs child" or "will my child's life be one of pain & heartache".    But the thing is that it is impossible to know what you can handle to help someone you love, until you do it.  That's the thing I came to learn - it is OK to be scared and to worry but I am stronger than I thought and the challenge make life sweeter.  I was one of the lucky ones to be given time and incentive to learn these lessons so I hope someday my experiences will make the transition from fear to hope faster for someone like me.  The only thing I can do is continue to show off my amazing girl in public and on this blog because the world can only be a better place when we learn the lessons this little girl has taught me - compassion, patience, pride, awareness, and unstoppable love.

Cate modeling her new school dress today so I could send a picture to daddy.

Ready for 1st grade?

Yesterday was Cate's last kindergarten parent-teacher conference.  It went really well - we love her teacher so that is not surprising.  There was a short discussion about her stubbornness and the new techniques they are going to try to counteract it but mostly we talked about readiness for the first grade.
drum roll please ..............................
The current expectation is that Cate is on track be promoted to first grade if we decide to have her pulled out for some special instruction.  What that exactly means is still unclear and will be determined during the IEP (Individual Education Plan) meeting in April.  But it is so exciting that her teacher thinks she is ready to give first grade a try.  We had really expected her to do two years of kindergarten but she was so well prepared she has already met too many goals to make it valuable.  Plus I am afraid if she does kindergarten again knowing all her sight words and some beginning math that the first half of the year she will be bored and prone to behavior issues.  For those like me that don't realize what first grade entails it is amazing how much is expected of 6/7 year old kids.  They will have spelling tests, reading tests, do addition and subtraction of multiple numbers/word problems, and are required to know 250 sight words - 100 of those by the end of the first quarter (50 of are the ones we are doing now). 
I see lots of question on DS message boards about what kids know or need to know in different levels of school.  Here is a sample based on a report I got at school Tuesday and how Cate did.  This ios an evaluation that was created as a result of discussions between our kindergarten and first grade teachers of what skills are critical for a student starting 1st grade, so it is specific to our school but has some good info.
Critical skills necessary for 1st Grade:
Reading
1)  Distinguishes between letter, word and sentence > Inconsistent demonstration
2)  Recognizes and Names all upper and lower case letters of the alphabet > MET
3)  Matches all consonant and vowel sounds to appropriate letters > 19/26 with allowance for speech
4)  Blends Individual sounds to read one-syllable decodable words > Not Yet
5)  Reads all 50 of the Kindergarten high frequency words at the rate of 30 words per minutes > Progressing (they tested 25/50 last time but last night Cate did 48 of 50 so this just needs a re-eval to be met)
Math
6)  Counts a number of object up to 30 > Not Yet, demonstrated to 15 (I think the issue here is partly speech for 13 -18 because if you help her out there she can pick it back up at 19 and go to thirty)
7)  Writes numerals through 20 > Not Yet (3/20)
8)  Identifies coins by name & value (penny, nickel, dime, quarter)> MET
9)  Makes fair trade involving combination of pennies and nickels > Not Yet (but last night she was able to count out the correct # of pennies to trade me for a nickel and for a dime so she should met this one on re-evaluation)
10)  Knows the names of the days of week > Almost (5/7)
11)  Knows name of the months of year > MET
12)  Knows the four seasons > MET
13)  Recognizes and names two dimensional figures (triangle, rectangle, square, circle) > MET

So if you are keeping score she has met 5 guidelines, is progressing well on 3, and has not yet demonstrated 5.  The great thing is that these are all memorization type skills so we can make sure she knows them by the end of the year.
How awesome is Cate!!!!

 

My baby is 3!

Lucy had a great birthday party on Sunday - her first ever!!!  I know everyone says this but I can't believe she is 3 already (on the other hand sometimes I can't believe she isn't 10).

The 3 Year Old Birthday Girl

The gymnastics facility and teachers were great and we had a wonderful turnout. 

How much fun is this place?

I even made two kinds of dairy-free, egg-free cupcakes successfully - a first for me!  The chocolate ones were a last minute addition when I realized the vanilla recipe only made 16 cupcakes which was the number of kids expected.  I found a great tip to take a regular box of cake mix (that doesn't have milk/eggs as a mix ingredient) and mix it up with 12 ounces of sprite then back as directed.  We didn't have sprite so I gambled and used Dr. Pepper.  I was amazed to find out this actually worked and the cupcakes were pretty darn good if a little sticky. 

Lucy picked a Toy Story theme so I wimped out and used paper decor.

All the kids seemed to have a great time playing with the parachute, diving in the foam pit, doing the obstacle course and bouncing on trampolines.  Cate being the "older women" was even taken under the wing of a teenage gymnast probably there to practice.  She helped Cate do the larger equipment and kept her entertained.  Lucy was a good hostess, even after telling me "I didn't give them a tutu (translate=invitation)" every time I told her about a positive RSVP!  She kept saying I only want my favorite friend R, Cate, Mommy & Daddy to come.  She was overwhelmed at the amount of presents and smiled all day until she fell asleep three minutes after leaving the party.  It was a great day!!

trampolines

Fun in the foam pit

Lucy loved the parachute but wasn't interested in going inside the bubble.

She was a little unsure about being the center of attention for the birthday song but was ready for the cupcake.

playing with a present with big sis

Dairy Free - Egg Free Cut Out Cookies

Sounds yummy?  Actually they were!!  Today is Lucy's birthday snack at school so I needed to send an allergy free cookie for her class.  She is actually not the only milk/egg allergy child in her class so I wanted to be extra cautious.  Luckily while I was cruising the allergy related blogs I read and I came across this recipe for "Giant Cookies" on the Living the Allergic Life blog.  It was amazingly easy and they are the best allergy friendly cookies I've had yet.  Lucy originally chose vanilla cookies but Kroger let me down and didn't have any of the cake mixes without milk in the dry mix so she had to choose between what we had at home.  Strawberry was the winner just like the original recipe and they are YUMMY!

Hope the kids like them!!!

Giant Cookie {Dairy-Free, Egg-Free, Peanut-Free}

reprinted with permission from http://livingtheallergiclife.blogspot.com

1 cake mix {read the labels to find one your child can eat. I bought Duncan Hines Strawberry Supreme which contains wheat and soy and has been processed around tree nuts. This one is okay for her.} (I used the same brand and flavor for Lucy)
3 tsp Ener-G Egg Replacer (Both our local Kroger & Publix had this brand - Kroger had it in the baking section of the "nutrional" area) + 4 Tablespoons warm water, mixed well

{OR 2 Eggs if you are not allergic}
1/3 cup vegetable oil
Vegan Chocolate Chips, optional - I chose not to use them this time. (Lucy didn't want them either)

Mix all ingredients well. Roll out onto a cookie sheet in the shape you want. (Mine was just a big blob! but try to keep it even or the edges will get hard.)  Bake at 350 for 16 - 20 mins but watch closely because thickness will effect time.  You can bake it and then cut shapes or cut shapes first. Frost as desired. Serve!

Lucy's gift list

I made a typical second child gets forgotten move recently.  Lucy is turning 3 this weekend and we are actually having a birthday party for her.  She had a little family dinner last year but we've never invited any of her friends.  Come to think of it she's never even had a play date that was only for her.  So this year we invited all the kids in her preschool class and the family friends in her age group for a tumbling party at a local gymnastics studio.  I was anticipating she would want a princess or Rapunzel party but surprisingly she asked for Toy Story - Toy Story 2 to be exact.  I planned the party, sent the invites, got the favors and decided on an allergy free mini vanilla cupcake recipe from a blog called Living the Allergic Life.   Hopefully the cupcakes will be prettier than last year's strawberry cake - which tasted good but looked horrible:

Lucy's birthday cake - 2010

What I forgot was to buy Lucy a birthday present - never even thought about it before Monday.   I had some shopping time yesterday, so Tuesday in the car I asked Lucy what present she wanted for her birthday.  Here was her response:
Cinderella Playdoh, a Surfboard, a kite, and a Belle pillow.
OK - one of those things I can do, I'm sure they have kites somewhere although I didn't see them at Target yesterday.  Cinderella Playdoh and a Belle pillow - not even sure they make those.  And the best one A SURFBOARD - do 2 year-olds ask for this stuff?  I told her that she couldn't have a surfboard because we didn't live near the ocean, she said she'd just use it in the pool this summer.
I settled on a regular old playdoh factory thing where you make "cakes" (which she will probably eat knowing her history) and a couple Toy Story poseable dolls.  Not very exciting but hopefully she will accept them given the excitement of having a party.  Cate got her a princess bedtime stories book, which is a perfect gift since Lucy steals hers every night.
Poor youngest child - I'm pretty sure I had presents for Cate ordered from cute shops a month before her birthday at that age.

Lucy's 2nd birthday - poor thing I didn't even wash the chili off her face for pictures!

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.