May 27, 2011

Re-defining Down Syndrome

A week or two ago Sheena (Hannah's friend and dance instructor) asked permission to write a post about Hannah.   Of course I was pleased; I was also curious.

I was almost expecting something about how Hannah was a "joy"--something a bit fluffy and superficial.  I've had years of people telling me how sweet/happy/adorable she is.  Everyone enjoys hearing nice things about their child; I am no different.  But frequently I hear a twinge of condescension in their voices.  stereotyping.  The old, "Those Down syndrome people are SO happy." line is not only old, but also inaccurate.

Am I jaded?


My teen-aged person with Down syndrome is concrete, irritable, enthusiastic, crabby, obstinate, feisty, effervescent, exasperating, lovable, temperamental, funny, true, annoying, imaginative, entertaining, and 100% lovable.
Pretty much the same as everyone else with 46 chromosomes.

I know Sheena "gets" Hannah. I knew she'd have something valuable to share about her friendship/mentor-ship with Hannah.  I wasn't really worried about Sheena writing platitudes of sweetness, milk and honey.

My baggage of preconceived ideas of how people see Hannah shouldn't come into play.  Really, I'm just doing the same thing that they do.  If the worst pet peeve I've got regarding Down syndrome is society's inaccurate image of "happy people", then I ought to just be quiet about it.   It's just a slight annoyance, not a horrific problem.

(BTW, I think the worst thing society does is have low expectations.)

Anyway, back to Sheena.  She wrote her blog post. And it's interesting and amazing.

I cannot thank her enough for just thrusting Hannah into her dance class.  It seems to me that she orchestrated the best possible classroom environment possible--a variety of open-minded peers, incremental teaching, patience, high expectations, encouraging instruction.   And, I assumed, some sort of modified choreography.  But I learned from Sheena's blog that she didn't change a thing for Hannah.

Sheena's post isn't so much about what she has done for Hannah.  In fact, it's about what Hannah has done for Sheena.  That was what surprised me.

It reminds me of when Hannah was a baby, how I discovered that Hannah is a great teacher.  She led the way through all the murky medical and emotional waters we navigated.  I've sort of forgotten how much she's taught me, after all, I do fancy myself a teacher.

Make a visit to Sheena's blog.  See what she's got to say about Down syndrome defining someone's capabilities.


Meriah said...

I'm looking forward to heading over to her blog to read what she has to say! I wanted to take a moment to thank YOU - when I was pregnant with Moxie, I'd lurk on your blog a lot. I loved your updates on Hannah, and Hannah is so pretty and sparkly that it alleviated a lot of my fears about how Moxie would be. Rightly so.
Many thanks!
- meriah

Wren said...

Wow! What a wonderful tribute to Hannah...she's lucky to have such a wonderful friend! People are always surprised when I tell them that Sutter is FAR naughtier of a baby than Landon ever dreamed of being! He is defiant and into all kinds of mischief all day long - Landon was my happy easily entertained baby! :)

Becky said...

This is the first time I have been to your blog. I am hooked! My daughter is four with Down synrdome so I so enjoyed reading about your older daughter. She is truly an inspiration!

Shelley said...

I just headed over and OMG - what a lovely post - but especially I loved watching the clip of Hannah dance. My Hannah LOVES dance. I have her in a regular class (and I am wondering how long it will last - so this class is indeed inspirational). I also have hedged our bets and she is in a special needs dance class too - she absolutely loves both...I hope she is still enjoying it and is half as graceful as your Hannah when she is 13. Thanks for the link - it made my day.

Kim said...

That was beautiful. You are lucky to have someone so wonderful in your lives and she is just as lucky!

Leslie said...

Love both posts! What a beautiful dancer! This was an encouragement to me! Thank you for sharing it!

Melissa said...

Love, love, love your post and Sheena's!

Karen Longo said...

What a great post by Sheena; it made me cry a bit, but also really made me think. I loved the dance recital video; how awesome!

Josette said...

It may seem a bit silly to some to be offended by comments about how Down Syndrome people are so happy....but I too find them annoying! I always think, "You don't know my Jessie!" I loved your choice of effervescence as a word describing Hannah :) I might have to borrow that sometime. Loved reading about Hannah and dancing.

Josette said...

has the nagging feeling that I might have misspelled effervescent in my previous comment ?! :)

Natalie said...

Wow, wow, wow. The post, the video clip, the interactions between Hannah and her dance friends -- what an amazing thing for all of them! What a blessing Sheena is for all of those girls!

Anonymous said...

How wonderful for teacher and student. They both received such blessings from each other.

How funny you should say that about low expectations. That is one of my pet peeves also. Ran into it this week at scout camp. They kept saying how cute and adorable. Not sure they felt that way after I dragged him kicking and screaming out of the bldg one night. BUT Sawyer showed them he could do the things the other kids could. Not because they expected it but because MOM and DAD expected it.

I hope I get to meet Hannah this fall. Not 100% sure we're going to make it now. Just signed on for a trip to Ethiopia in the summer of 2012. Will keep you posted on out W'burg trip.