Saturday, March 30, 2013

Reflections on Down syndrome (again)

I took Sofia to her ballet/jazz class this morning, and spent most of the time watching the class (usually I read a book and hide). Today Sofia's belly hurts from too much Passover food, and she's been up really late most nights this week, so she was a bit "off". But it was sweet. For ballet warmups, she decided she was cold and needed to snuggle in the teacher's lap. She fit just perfectly, and Miss Paula was able to help her through every step.

The ballet class is technically for 5-6 year olds, but my darling 8 year old is only of medium height and just about the same attention span, so it's the perfect class fit for her. The other girls are adorable. When they line up to do practice steps across the room, usually there are 4 girls in each of two lines, and one in the middle. Today Sofia got the middle spot, which meant she got to practice 4 times as often as the other girls (which she certainly needs!).

The dance studio of course has mirrors on two walls, so that's a wee bit of a distraction. I had her hair up with a cute little pony tail on top, but she kept noticing it and pulling at it. Oh well. And the glasses came flying off only a minute or two into class.

Since she was not feeling great, she asked me to come in (usually parents watch through the window or from the TV), and then announced "Guys! This is Mom!" - full sentence, very clear. So sweet.

It was lovely to see my daughter be part of the class so well. They are practicing for the recital in May, and she's got about 3/4 of the dance down already. Sometimes she gets carried away by the arabesques, but eventually she catches up with the other girls. She's on the end, and the teaching assistant (who is WONDERFUL) stands just off to the side in front of her, so she's got extra support right near by.

Meanwhile, in between watching ballet, I was checking in on Facebook, and getting totally depressed. You may have heard about the tragic case of Robert Ethan Saylor. On January 12 he went to see a movie with his aide. After the movie the aide went off to get the car. Robert wanted to stay and see the movie again, and would not get out of his seat when the movie theater guard asked. So three off-duty police officers, moonlighting as mall security, were called, handcuffed Robert and threw him to the ground. He died of asphyxiation, calling for his Mom.

Here are a few articles and opinion pieces about his story:

The New York Times
Down Syndrome Uprising
Huffington Post
Kimchi Latkes blog

The Petition on Change.Org

And a really thorough list of "What YOU Can Do" on the Life As I Know It blog

The whole case is sad and sickening and terrifying. More so, because, well, I could EASILY see Sofia getting stubborn and belligerent when faced with authoritarian instructions. How easily? Too easily. Her father has a tendency to attempt to be authoritarian. It does not work well. And he's someone who knows and loves her. What happens when it's some stranger, someone who not only does not know and love her, but who looks at her and sees "different and therefore unworthy of consideration"?


We've come SO far. Twenty years ago, would she be in this ballet class? Would she be in "regular" swimming and gymnastics classes? Would she be included at the public school? Would she be learning at the day school?

Nope. Twenty years ago, I would have had to fight for absolutely every consideration she received. She would have been relegated to some token participation, at best, and more likely been left lonely and alone most of the time.

So I'm thrilled that we live when - and where - we do.

But what happens as she gets older? When she's not a cute little girl, who seems like a 5 year old, will she still be tolerated and considered "cute"? Or will she be marginalized, rejected, and treated meanly?

I hope the world continues to improve. Continues to recognize that ALL people are of value. We had several boys with Aspergers and Autism at our seders this week, and each of them brought something unique and important to our house. Themselves. Whether they were able to participate with help, or spent most of their time sitting on the couch reading a book, they were important to the make-up of our guest list. They were important to how my children learn to treat others. They ARE important.

And with the Robert Saylor case, I question the need for three sets of handcuffs on ANYONE - visible disability or not. That's I think the most shocking part of the judge's ruling. That the security guards acted reasonably. Three sets of handcuffs, and having the person on their stomach while handcuffed, is excessive and wrong. For anyone. The visibility of Robert's "different" SHOULD have made it clear sooner, but they shouldn't treat ANYONE like that.

I'll send the advocacy letters. I'll post this blog, and keep sharing things on Facebook. But this is often a matter of "preaching to the choir". If you read my blog, or are my friend on Facebook, you already are emotionally attuned to the wonder of my daughter and people like her. How do reach The Others? The Mean People?

For that matter, how do we reach the not-mean people, the well-meaning people who still don't "get it"? There's a girl in Sofia's Inclusion homeroom. Sofia loves J, and J loves Sofia. But J treats Sofia like a Cabbage Patch Doll. "Sofia", she says, as if she's talking to a sweet little two year old. And then she picks Sofia up and carries her. And the teachers do not go out of their way to notice or correct J. Even though Sofia is more than a year OLDER than J.

I'm looking forward to Sofia moving to the sub-separate classroom. Should happen very soon - finally got the paperwork signed this week. She'll still be in homeroom for art, music and PE, but more learning will be done in the small classroom.

My daughter is different. She learns at a different pace than her "peers". She focuses on certain things - her movies, her toys - more than her peers. She needs a different mode of instruction for many things, and lots of repetition. But she is ABLE to do so many things. She continues to WOW anyone who watches her (swimming is the most gratifying time, as there are frequently different adults bringing all the kids, and so many comment on how great Sofia does in swim class).

At our seders this week, Sofia followed along in the Haggadah and sang many of the prayers. She and Lilie (along with me and Laura) chanted the first of the Four Questions both nights. She loves to set and clear the table, and help light candles, and direct people to their seats. She can recite the lines for many of her favorite movies.

She has been keeping her glasses on much longer, although last night we spent about an hour searching for them (that's what got David upset at her - he'd ask "Are they...." and to every suggestion, she said "Yes".)

She's tired, from staying up late every night, so we're relaxing now. David took the boys rock climbing, and my parents are coming up this afternoon.

Trickling off...