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!