The Harnisch Family

The Harnisch Family

Mar 21, 2012

My big 'ole "Down Syndrome Awareness Day 2012" post

For those that may not know...Trisomy-21 is the medical term associated with Down Syndrome. Basically, DS is the result of an individual having a 3rd copy of their 21st chromosome. Hence, T-21...which makes March 21st the perfect day to celebrate.

Today...March, 21st 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. But there is still so much more we can do.
I have been writing this blog post in my mind for the last couple of days now...I had several ideas, myths, facts, inspirational stories & video links (not to mention cute Macy pics) that I wanted to share.  But this morning, I came across a statement put out by the United Nations.  It was so profound.  All the sudden, I forgot about everything I was thinking and realized I could not have said it any better.  So, it is with pride that I share the following message with you!

Today marks the first commemoration of World Down Syndrome Day.  I congratulate the global partnership of governments, activists, families, professionals and others that worked so tirelessly and passionately to bring this Day into existence.

21 March 2012 – 
Secretary-General Ban Ki-moon today urged the world to reaffirm that persons with Down syndrome are entitled to the full enjoyment of all human rights and fundamental freedoms, deploring the stigma and discrimination they continue to face.
“For too long, persons with Down syndrome, including children, have been left on the margins of society,” said the Secretary-General in a message to mark the first World Down Syndrome Day. “In many countries, they continue to face stigma and discrimination as well as legal, attitudinal and environmental barriers that hinder their participation in their communities.”
He noted that the discrimination can be as invidious as forced sterilization, and as subtle as segregation and isolation through both physical and social barriers.
Persons with Down syndrome are often denied the right to equal recognition before the law, as well as the right to vote or be elected.
“Intellectual impairments have also been seen as legitimate grounds for depriving persons with Down syndrome of their liberty, and for holding them in specialized institutions, sometimes for their entire lives,” said Mr. Ban. 
In many countries, girls and boys with intellectual disabilities lack sufficient access to mainstream education.  
The prejudice that children with Down syndrome obstruct the education of others has led some parents of children with intellectual disabilities to put their children in special schools or keep them at home.
“Yet research shows – and more people are coming to understand – that diversity in the classroom leads to learning and understanding that benefit all children,” said the Secretary-General.
He pointed out that the United Nations has for decades worked to ensure the well-being and human rights of all people and that those efforts were strengthened by the adoption of the Convention on the Rights of Persons with Disabilities in 2006.
That Convention “embodies a paradigm shift in which persons with disabilities are no longer regarded as objects of charity and welfare, but as persons with equal rights and dignity who can make an enormous contribution to society in their own right.”
“Let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for all,” said Mr. Ban.
He praised the global partnership of governments, activists, families, professionals and others who worked tirelessly and passionately to bring the Day into existence.

you may also follow this C-SPAN link as Rep. McMorris Rodgers Delivers Floor Remarks on World Down Syndrome Day 3/21/12.
So to recap:
“On this day, let us reaffirm that persons with Down syndrome are entitled to the full and effective enjoyment of all human rights and fundamental freedoms. Let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for all.”
Macy (excitedly?) posing next to the "Down Syndrome Awareness" ribbon I made a few weeks ago :) It is hanging proudly on our front door in commemoration of World Down Syndrome Day.
On this day, we are encouraged to join in a world-wide celebration.  Do something to show that our support for people with Down Syndrome encompasses the WHOLE WORLD.

Below are a few things we have been doing to support this mission.

Macy was once again selected to be a part of The World Down Syndrome Day Video.  What an amazing heartwarming effort!  (big thanks to our friend Penny from the UK for all her hard work on this project & dedication to this worthy cause) follow this link to watch the video in it's entirety (3:55).  You can see Macy's precious smile at the 2:43 mark. :-)

Something I find most interesting, is that while I spotted a few other Omaha area kiddos in the video...Macy's picture ended up RIGHT next to her buddy Kyle (who lives in Oakland, NE). Just crazy to think how they were among 100's of others from ALL OVER the world - and they end up RIGHT next to each other :-)
Because video's do not print well (or at all) in the blog are a few screen shots from the video  :-)
 There's Macy in the lower right-hand corner!!!  next to her buddy Kyle  :-) Is he a handsome fella or what!?  He is most certainly one of the most popular kids at Oakland High School.
Grace & her baby sister Claire are above in the lower right-hand corner (sporting their husker cheerleading outfits!).  Also pictured above is Janessa hugging her sweet baby sister second from the right up top.
 There's the four "Rich" kids (second from right up top).  They also live here in Elkhorn & Sweet Eisley is just a couple weeks younger than Miss Macy.  :-)
I could be wrong, but I'm pretty sure that boy in the yellow shirt (holding the blue ribbons) is our friend Daniel.  Or at least he looks JUST LIKE HIM!  :-)

Last year I tagged along with my friend Dana as she spoke to Evan's big brother's (Reese) 2nd grade class over at Manchester Elementary. She shared lots of great information & we showed the kids "Deedah & Me". It was really fun! My husband had a "Genes" day at his work (Seim Johnson) and they raised a few hundred dollars for DSA :-) 

For the last few weeks I have been mentoring a young girl in the DC West School district. She wanted to take on Down Syndrome Awareness as her semester long Senior Project. She will be making a presentation regarding it at the end of the year, but also plans to coordinate a "Walk" of sorts in the Waterloo & Valley community. She stood before the Waterloo City Council last week, and gained approval to use the Trail to hold a DS Awareness Walk on April 1st (more info on this to come later).  I think this is awesome and important to note, that this is a school district that has never had an individual with Down Syndrome attending their schools (well until now, baby Clay lives in the DC West school district) :-) 

Also, I spoke last week to the "Disability Theology" Class at Midland University. After the professor shared the syllabus with me, I decided I wanted to actually TAKE the class all semester (it started Wed)...I am excited about all that I am learning and being exposed to as we have been exploring a wide range of texts on disability and religion, etc.  You can bet, I try my best to advocate on all our little one's behalves there (shedding light on our many positive & beautiful experiences). As this class has 40+ students enrolled in it (primary majors of focus are Nursing, Teaching & Religion) the areas of which individuals with Down Syndrome may have the most relevance and interactions, etc...It has been a joy to be an active part of this class.

Today, The girls shared Down Syndrome information and bracelets with their pre-school classmates and teachers.  A note was sent home to the parents of Macy's classmates (how very nice of her teachers to write it!)
Have you ever tried to round up 12 two-year olds for a photo-op (during recess no less)?  Well here's the play by play at how our attempt went today.  hehe
Once we got them all seated and distracted with their own balls, it wasn't too bad.  SUCCESS!
I should have quit while I was ahead...but the whole class (with the exception of the crying girl out in the hallway and...well...Macy...hehe) was sitting so nicely, I had to keep shooting!  ha :-)
uop.  There she goes again...
got'er derrier' up in the air!
Miss Linda tries her best at convincing her to sit with her friends.
But she says "all-done".  hehe
yep, pretty sure we're done!

And finally here are a few pics taken before school today.  We slept in and were running behind as usual, scurrying through the house frantically gathering school, daycare,work & Oasis stuff, all the while fighting to get bodies dressed, teeth brushed, bellies fed, hair combed & pony-tailed...but we did have 1 minute and 36 seconds to spare for a few front porch pictures!
You see, much to my dismap, Kenzie NEVER wants to wear her buddy walk shirt...but I successfully bribed her with a fancy tu-tu and there she be  :-)  Hence the reason for wanting A picture!
McKenzie was telling me she spotted the Easter Bunny over in the bushes...mhhmmm...
nice smilin' Kenz!
Macy finally chimes in a, expression of sorts.  works for me!  :-)
Kenzie's turn to smile
Macy's turn to smile
now if only they would smile at THE SAME TIME.  fat chance right?
 I love this tu-tu, because, as you may recall in a previous posting, the bumblebee is symbolic of the HOPE we have for Macy  :-)
Let's go to school!
Happy World Down Syndrome Day everybody!

1 comment:

  1. Oh, Sherri, I loved, loved this post and all the wonderful thoughts that came to mind. The pictures of the class are awesome and my favorite of the girls is where they are both kind of looking down (3rd from the bottom) but it such a warm, loving sister moment. That Joe is so involved just makes me smile! You will never know how important that will be in Macy's life! And yes, I think that is Daniel in that one picture. I noticed him when I watched the video. He was a friend of my niece's also. Since Jane is working full-time, etc. she had not been so involved, but does take Stefi to several of the activities.