31 for 21 Blog Challenge: DAY SIXTEEN: Do We Decide the Outcome?

I read a story recently of a young lady with Mosaic Down Syndrome.  She had battled leukemia and, now at the age of 9, is in remission.  Here's the thing....until she was diagnosed with leukemia, she didn't know that she was rocking an extra chromosome.  That makes me wonder what role parental/provider/professional expectation plays....  It must make a difference.

If this young lady was thought to be 'normal,' she was treated as such.  There were obviously no overt signs of delay or red flags would have been raised much sooner.  It wasn't until a medical problem confirmed an extra chromosome, that anyone knew otherwise.

I have friends that have children with DS.  Some kids are coddled, as if still a baby.  Some, not so much.  I wonder what ultimate role that plays in outcome. 

We expect Josiah to be not unlike our other boys.  Outside of lower muscle tone, he is just like them!  I know he's still young so we don't yet know his capabilities.  However, we never question his capabilities.  We know he can do anything he wants, anything he sets his mind to.

A provider recently said to us "well, kids with developmental disabilities can get this until they are 7."  She was referring to a service we didn't want.  More strikingly, she referred to Josiah as a kid with developmental disabilities.  He has Down Syndrome.  I don't see him as a kid with developmental disabilities.  I think how things are phrased are important. 

This all may sound very petty.  It may sound as though I'm arguing semantics.  It's just my opinion....

"Labels are for filing.  Labels are for clothing.  Labels are not for people."

- Martina Navratilova

Dreamnight at the Zoo 2012

This year, we learned of an event called "Dreamnight at the Zoo."  We heard about it from a local group we belong to - a group of families all of whom have children with Down Syndrome.  It seemed like a nice idea for our little group of families.  I had no idea the scope, or meaning, of the event.

Dreamnight at the Zoo is a global event which strives to offer an annual, cost-free, evening at the zoo, for chronically ill & disabled children and their families.  It is, ideally, held on the first Friday of June, from 6pm-10pm (times vary slightly).

Each zoo organizes the event its own way but in all the zoos children are welcomed, and treated like VIP's.

Rotterdam Zoo (Netherlands) initiated an evening "at the zoo," for children at the Sophia Children's Hospital, in 1996.  This first event, was specifically for children with cancer.  175 children were invited, and brought parents/siblings. 

In 2000, the Amsterdam Zoo joined their effort. 

In 2002, Denmark & Belgium joined. 

In 2003, France & Canada joined in the effort. 

2004 welcomed Holland, UK, Greece, Czech Republic, US, Columbia, New Zealand, Hungary, and Sweden.  In each Country, additional zoos joined.

2005 welcomed more zoos.  In addition, Dreamnight welcomed Poland, South Africa, Australia, Ireland, Japan, Mexico, Taiwan, and Scotland.

In 2006, Switzerland, Portugal, India and Israel joined the team.

The list just keeps right on growing.......
Last Friday, we were fortunate enough to have been included in this year's Dreamnight.  We packed up the boys and headed to the zoo.  Our Dreamnight was scheduled from 5:30pm-8:30pm.

Upon arrival, we noticed the sign:

"The zoo is closed to the public.  This evening's event is by invitation only."



As we walked through the front door, we were quickly greeted by smiling faces.  They asked our names & verified that we were on the VIP list.  Each child was given VIP passes to wear around their necks - they were nice too - laminated cards with a beautiful picture of an elephant on the front, the letters VIP, all on a nice lanyard.  We were handed an envelope with our name on it.

As we passed into the zoo, we stopped to peer into our mystery envelope.  Inside, we found tickets for a free teddy bear (for each child), popcorn, ice cream, and snack bar dinner (one per person).  The carousel and train (which usually cost extra) were free as well - unlimited rides.

Well, we had a blast!!!!  It was three hours of bliss.  Josiah is young so he couldn't really understand what we were doing, but he loved being out with family.  His older brothers were elated.  It was less hectic, as it was only families (public was excluded).  It was a great time!  We saw some of our friends there (from the group we belong to).  We enjoyed seeing the other kids from our group.

We can't wait for next year.  Josiah will be older - he will have a blast!

Here's a cute pic of Josiah, just enjoying his night out with family.

You can't see it in the picture, but we were just as happy as he was :)

For more information on Dreamnight at the Zoo, or it's history, please visit:
http://www.dreamnightatthezoo.nl/English/index_EN.htm

Media Monday 042312 'Man in a Bear Suit'

This touching video crossed paths with me, this week.  It raises the question...how far must one go to be accepted?  If you're 'different,' how must you appear in order to receive acceptance from a stranger?  Compassion?  Affection? 

http://www.youtube.com/watch?v=zFWr-CKMWGY

Poem: "Welcome to Holland"

I came across this poem, early on.  How true this is.....


Welcome To Holland
by
Emily Perl Kingsley


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever  go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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©1987 by Emily Perl Kingsley. All rights reserved.