"Twinkle Twinkle Little Star"

Last week my friend was over visiting with her 2 boys.  The 18 month old cuddled up with his blanket on his mom's lap & snuggled up to go to sleep.   The quiet was broken as K began to sing "Twinkle Twinkle little star".She sang the song twice before wishing him sweet dreams, just like I have done many times for her.

Up Up & away..................

Over the last few months, since I started my blog, I have noticed a number of times, that people have found my blog (or probably went looking for it) by googling "up, up & away with Down syndrome"  I'm not complaining really.  I really appreciate that they were interested enough to search for my blog.  I just can't help but think about how that sounds -  the "away with down syndrome" part.  Again, I'm really pleased that people are interested in my blog, but I just felt that I should let everyone know what I was thinking when I chose that name.

I don't want to do away with Down syndrome, but I want to give my daughter the ability to overcome the stereotypical limitations that this condition has traditionally put on people.  I want people to know that she has Down syndrome, and that she is this incredible person - I want my daughter to shatter people's expectations.

 Most of you who have been reading my blog likely realize that I have very high expectations of my daughter.   What I was trying to do when I chose this name was to say that the sky is the limit for my daughter.  I refuse to put limits on her & I refuse to have anything but the highest expectations.  And one day, as I fight back tears from a tumultuous mix of emotions - proud, happy, sad, all at the same time, I fully expect her to wave goodbye as she flies up, up, up & away and towards a new and independent life.

Jumping Into the Pool & Conquering Her Fear of Heights!

This video is of K jumping off of the top step of the ladder into our pool.  It was actually taken a couple of weeks ago, but I've been so busy that I'm just now getting around to posting it.  It is not so much her abilities in the pool that makes me proud when I see this video.  It is the fact that she has had a fear of heights for about 6 months which we have been trying to help her get over.  K has enjoyed climbing the whole time, but has had to feel secure about her footing & would not have jumped previously.  She has obviously been working hard & improved a lot. It was her own idea to go jump off the ladder & I'm glad I had my camera there because usually I never catch these sorts of moments.  You can tell that she was a little nervous as she jumped but you can also see how proud she is of herself by the little delighted squeal after her head bobs up to the surface again.  

LeapFrog Tag Reader

K go the the LeapFrog Tag Reader for Christmas last year, but for some reason, I have found it incredibly difficult to load the books onto the pen.  She has only been able to use it for the Ozzie & Mack book that came with the set.  Finally, it worked the other day! I was so excited to be able to load all of her books onto the pen. This is what happened:

 

 

After almost 9 months of reading the books without a pen, she no longer had any use for the it! Gotta love technology:(  I am going to keep trying though.  I bet that if one of K's big sisters likes the pen that she may take a new interest in it:)!  

My Energizer Bunny!

It's 12:02 as I am writing this, my  husband is driving, & K is sitting in her car seat reading "Moo, Baa, La La La" we are on our way home from a wedding, dinner, & dance.  The wedding dance started at 9pm, & K danced until we dragged her off the floor.................twice actually:).  Most of the year, we have a scheduled bedtime, & stick pretty close to it most of the time, but summer we tend to be much less structured & this last week has been so busy that I don't think K has seen her bed before 9:30 pm once!

12:11  - Midnight lunch wasn't enough, so K is having a very quick snack before bed.

12:19 - snack finished, teeth brushed, just finished saying our good  nights.

12:20 - Out like a light!


Some days I think she could outlast the Energizer Bunny!

.....................I sure hope she sleeps in again!

I Am My Daughter's Voice

Recently, a movie was released called The Change Up.  I have not seen it myself, & will not be going & I hope that my family friends, & readers of my blog will join me in boycotting this movie.  Although I haven't seen the movie, I've heard numerous reports about one particular scene. I am not quoting the scene word for word, but basically one character asks about his friend's twins & why they are not talking yet.  Then he asks" Are they retarded?  This one looks a little downsy"

Why is this funny?  How is it a joke to make fun of a group  of people who often can't defend themselves?  Why is it OK for Hollywood to behave like an obnoxious, pushy brat on the playground?

As parents, friends, & loved ones of people with developmental delays, we need to stand up for our loved ones.  It is not OK.  Any other group being discriminated against in this way would create such an uproar that the word would fall out of general use. 

At the age of 4, my daughter does not understand about the "R" word.  Until she does, I will be her voice.  I have spoken out many times to help people realize why they shouldn't use the "R" word, but today I am putting a promise in writing to my daughter.  I hope you will join me in promising your loved one that you will stand up for them as well.

My promise to my daughter:

I will be outraged for you.

I will be strong enough to stand up & say "You cannot treat my daughter that way!"

I will gently correct our friends & loved ones who don't understand the true implication of their words.

I will explain to strangers why it isn't funny to make fun of those who are often unable to defend themselves.

My precious daughter, when you are old enough to understand the implication of this word, I will help you learn how to stand up for others who don't have a voice.

Love you,

XOXOXO

Mom


I am adding this footnote a few days later:

Several times, when politely explaining to people why they shouldn't use the "R" word, they have responded the they don't consider K to be MR, so they didn't connect that word to her at all.  I don't consider K to be MR either, but think about it - does that mean really OK to make fun of others who they do consider to be delayed?  Grrrr................ 

At what age did K first start reading?

I am not a good record keeper & lost track of how old K was when she started reading.  The other day I stumbled on the post I wrote on a forum when K was 15 months old. I copied it here:

K is 15 months old.  I have been doing a reading program since she was about 6 months, however it has been much more organized since I discovered the Little Reader Program.  I have never tested her before today.  We tested her with about 10 different word cards.  She got every one right!  K has down syndrome.  Thirty years ago I would have been told to put her in an institution because she was unteachable ( I could never have done that).  Even when she was born I was given old & outdated information about her potential.  I admit I had never heard of teaching babies to read a year ago & would not have believed she could do this.  The sky is the limit for my little girl!  Thanks to every one here for all the help and information & for a place to come to celebrate with others who understand.

Thanks again from one proud Momma!

Wow!  I'm glad I found this again!