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?

Probably.

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.

Dance when you think nobody is lookin'

Today is the recital. Twice.  Hannah was very excited yesterday, even after a VERY long rehearsal (waiting for 2.5 hours to dance for 2 minutes).   She had never been on a stage this large before, and she only had one chance to try it out!  So today's task is to hang out at the Landmark Theater from noon to 8:00 p.m. and still be smiling.  




Tomorrow we leave for our annual trip to the beach!!  Two weeks (almost)!!   We had to shave off a couple days so Hannah could perform.  It was totally worth it, as you could see from yesterday's bit of joy-induced improvisation.

But by tomorrow morning all the dancing dreams will be replaced by visions of SPF, sand, salt and sun...

Oh yeah.  And sharks.

Piano practice

Hannah is busy preparing for all kinds of recitals in the next few weeks. It's choir on Monday and Tuesday, then dance all weekend.  We head off to the beach next Monday, and don't return until June 4th.  Soon after we're home it's piano recital time!

Tonight she called James into the music room for a "concert".   She's working on memorizing her piano pieces.  

She played through "Singing in the Rain", and then was ready to move on to "Caribbean Holiday".  She told him, "Sit back and enjoy the ride.  This song is like sippin' some lemonade!"

Dancer

It's two weeks until Hannah's dance recital.   This is her first dance recital, on a huge stage, with bright lights, and she is totally excited about it!

This was Hannah's first year in a regular dance class.  She was the only "new" student in the class, so she had a lot of catching up to do. She's learned so much from her teacher, Sheena, and from her friends in the class!  I could not have envisioned a better environment for her!  I was expecting some frustration or annoyance from her classmates--I mean, really, most of them are middle schoolers, with a few high schoolers in the mix as well.  But there hasn't been a single issue with any of them. They have been so very patient with Hannah.

Aren't they all beautiful?

Last week it was Picture Day at the dance studio.  I was rather dreading it.  I was imaging it to be a bit like one of those pageant TV shows.  We had instructions for hair and makeup. Hair?  She can't stand to have her hair pulled tight, but we did manage to get in a bun without too much drama.  Makeup?  On a 13 year old?   A 13 year old who isn't interested in makeup?  She was much more interested with her swirly dress!

We'll see how the pictures come out.   When Hannah is told to smile, she usually ends up with a grimace.  We usually have to make her laugh to get a real smile out of her, and then her mouth is usually open.

The girls got the chance to rehearse in their costumes.  This is good because they all get distracted with how fabulous they look in the mirrors and how different it is to dance in a skirt than a leotard.

Hannah knows all her steps, but her timing is just a smidgen behind the rest of the dancers.  She tries her best, and that's just fine.

Hannah is the farthest dancer in blue at the beginning of this video clip.

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She's so happy when she's dancing!