Thursday, May 16, 2013

44

I am choking on the number 44 right now.  It is not the number of pounds I need to lose or the number of days left until school's out; it is not even my age.  44 is the IQ score that Anna has been evaluated as having...with 95% confidence.  For those not familiar with the IQ Index, 90-109 is considered average.  44 -- well, that falls in the Extremely Low range at less than the 1st percentile rank.

I had tears streaming down my face as I read her evaluation reports.  It is such an ugly thing -- these IQ scores/tests (or standardized test in general).  I am beginning to think they do nothing more than give you an inflated ego, or make you feel completely defeated.  And I should know -- we have both ends of the spectrum  (and a little in between) in this house.

Sometimes it is hard to put those scores into perspective.  It is hard to remember that they do not tell the whole picture. A person who scores well may, indeed, be very intelligent, but they may lack common sense or social skills.  Just as a person who scores poorly is not necessarily "retarded" (though technically that is the clinical definition of "retarded").  There are a number of factors that go into the testing -- and in Anna's case, her behavior and refusal to cooperate most certainly must play a role.  Either way, an IQ score is only one small piece of the whole picture.

An IQ score does not measure a person's value or worth.  An IQ score does not measure the amount of love that someone can bring.  An IQ score does not measure a person's full potential.

"For you created my inmost being; you knit me together in my mother's womb.  I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." - Psalm 139:13-14

God made each of us - uniquely, perfectly, and for a His glory.  I have no doubt that Anna will bring glory to God - in her own unique way.  An IQ score can never measure how much glory she will bring!

An IQ score is merely a number -- a starting point that will help guide us in how to teach and help Anna as she continues to grow and develop.  We know what we are dealing with -- a beautiful, loving, intelligent (despite her low scores) little girl with the will of iron.


So, we will embrace that 44...and then disregard it.  Our job is to give Anna every opportunity to reach her full potential, and then pray, pray, pray, for God to use her.  I have no doubt He will, and we will all watch with awe and wonder.  =)

(BTW - I am not saying anything bad about Anna's evaluators.  I know they all love her and want what is best for her -- and sadly, part of getting what is best for her is to first have an accurate picture of where we stand.  It a very painful reality that must be addressed, and I know her teachers, aides, therapists, and case manager and psychologist all adore her and are just doing their jobs.  But, man, I really wish I could jam the report back down their throats and tell them they don't know Anna at all and that their evaluations are completely bogus.  They aren't - and I know it.  It just hurts seeing it in print sometimes.)

Saturday, May 4, 2013

Happy Birthday, Paige!!

Happy 7th Birthday, Paige!!

We love our smart, beautiful, compassionate, funny, tell-it-like-it-is girl!!!  Life with Paige is rarely dull, or quiet.  Dance parties are the rage, and crafts are her game.  She is a killer on the court or on the field, but a sweetheart and friend to all.

We love you and hope you have a great birthday!!

http://www.youtube.com/watch?v=1-LGI8dd6KM&feature=share&list=UU2gzXSR_BtAlUhNWf1XiyOw

May the 4th be with you!!!!!
(Did we mention that she loves the fact that she was born on Star Wars Day?)

Monday, April 15, 2013

Happy 5th Birthday, Anna!!

Dear Anna -

Happy 5th Birthday!!

I will not lie, I am not overly sad to see 4 go.  As much as I want to keep you small and not let you get any older, I am ready to move past some of struggles that we have gone through this year with you.

I am ready to be done with the dropping to the floor when you don't get your way. I am ready to be done with the screaming and whining to get our attention.  And the glasses -- I don't even want to mention the glasses.  I am beyond ready to be past our struggles with keeping your glasses on your face and in one piece!

But as trying as 4 was, there is still so much to celebrate.  When I look back at where you were last year at this point -- well, you have come a long way, baby!

Your speech is the biggest change that most people will notice.  Finally, you are starting to be able to say what you want to say.  The joy on your face when you ask for something and are understood is priceless.

Your funny personality is really starting to shine.  And your new and intense obsession with Barbie movies that you has developed this year is hilarious.  I love how you replay parts over and over and over again to memorize the words and the actions, and then you act out those favorite parts over and over and over again.  Maybe I should be thanking Barbie for your improvements in your speech :)

So, Dear Anna, Happy Birthday to my Barbie loving, glasses breaking, floor dropping, crazy dancing, little water bug!!!  Our day is not complete without an Anna hug and keeeesss, and we thank God every day that you are ours!  I have no doubt that 5 is going to be a great age for you!! =)

We love you to the moon -- and back!

Wednesday, March 20, 2013

We're Celebrating!

World Down Syndrome Day is on 3/21 to symbolize a third copy of the 21st chromosome in people with Down syndrome.  Celebrate the value, acceptance and inclusion of people with Down syndrome on March 21!


We love you Anna Banana Pants!  Our lives are Extraordinary because you are in it!

Friday, February 15, 2013

Just a Normal Friday Night

Doin' the Harlem Shake...




Yep! That's how we roll, baby!  =)

Sunday, February 10, 2013

Happy Birthday, Charlie!!

Happy 9th Birthday, Charlie!

It is hard to believe that you are half-way to becoming a legal adult.
We are so proud that you are our son...every last goofy ounce of you!


Hope you have a great birthday!
We love you!

Tuesday, January 1, 2013

Happy New Year!!

Despite me being bogged down with a nasty sinus infection and upper respiratory infection on Christmas Eve and Christmas Day, and Jonathan being hit hard with the flu on Christmas morning, we still managed to have a very Merry Christmas!

After regaining enough strength (and balance) to drive 2.5 hrs, we trekked to Jonathan's parents' house in PA for fun times with family.

We had a fun December celebrating the season as we took in the city sites, a local parade, made dozens of cookies, school parties,  the annual party for our local Ds group, and of course, Santa!!

We are looking forward to 2013 and all the adventures that await us.  We wish you all a very healthy and blessed New Year!!

Friday, December 7, 2012

Doing the Most Good

Yesterday we decided to take advantage of an evening with no after school activities and went into NYC to see the "Big Tree" in Rockefeller Center.  The kids were quite excited about this little adventure and were even willing to skip doing their homework. =)



 We had a beautiful night! Not too cold, but cold enough to feel Christmas-y.
beautiful sunset as we drove down the West Side Highway




Loving the Lego Store!

We had a celebrity sighting on our way in!
Geraldo Rivera -- he rolled down his window to say 'Hi' to us!

And we met up with some really cool people (Aunt Christine, Uncle Joe, Eliza and Hudson)!




The tree was really big, and really pretty. The ice-skaters were fun to watch.  And the Lego Store was really cool.  But, I think we all had the most fun watching Anna help ring the bell for the Salvation Army kettle that was located at Rockefeller Center.




Yep! That's Anna -- Doing the Most Good!

Sunday, December 2, 2012

You'd Better Watch Out!

Yesterday was our annual DSGNWNJ holiday party.  This has become a fun tradition for our family and something that we really look forward to each year.

As usual, we got all fancied up and attempted a picture or two.



And then we went and got our dancing shoes on!




The highlight, of course, was a visit from Santa and Mrs. Claus!



To say that Anna was excited about seeing the Big Man is a gross understatement!  You would have thought she was a 13-yr. old and we had just told her that Justin Bieber walked in the room.  She jumped and screamed, sprinted across the dance floor, pushed kids out of the way, just to get closer to Santa and get a hug from Mrs. Claus.  When we finally got her to sit down to wait her turn, she kept sneaking closer and closer and infringing on other kids' time. I am pretty sure there are at least 6 or 7 kids that had Anna front and center in their picture with Santa.
Blurry - but you can see the excitement on her face

Move it, kid! I need to talk to Santa

Hey - I need to talk to Santa. Will you get him for me?

Hey Santa - here I am!

Why the infatuation with Santa?  Well, I am pretty sure she was feeding him a big line of bull trying to explain her poor behavior this year.  Don't buy it, Santa!!  Don't be fooled by her cuteness like the rest of us!!!




Friday, November 30, 2012

Bahhhh-bie!

Have I mentioned that Anna loves Barbie?  Or, as she says it..."Bahhhhh-bie".

Her favorite Barbie movie is Barbie: A Perfect Christmas.

We have seen this movie pretty much everyday since mid-August.  And, we listen to the songs all day long.  Needless to say, she has the movie, the songs, and the actions to the movie and songs down cold.

While the movie is on, or the songs are playing, Anna likes to sing along and act out what is going on.  There is one scene where Barbie goes to the window and is singing and wishing on a star, and then she does a ballet dance.  During that scene, Anna goes over to our window, sings and then turns around and starts dancing.

And now, Anna has started to add props to her movie watching...


Rolling suitcase so she can go to the airport


headphones like Skipper


stretching with Chelsea


turning on the light with Stacie

And, of course, a microphone for her concert later in the show
Oh, Anna (and Barbie) -- we love you!! =)