HIGH EXPECTATIONS, people!

I was just at the post office, and while I was there a small group of students from a public downtown high school came in with their teacher.  Most of them were kids with Down syndrome, so I tried to send out unobtrusive happy vibes of "My daughter has Down syndrome, too!" while watching what they were doing.

My happy vibes began to fade as I discovered that they were there to learn how to stamp and mail a letter.  They were a group of high schoolers, learning to send mail.

In high school.

As I finished up running my morning errands, I got madder and madder.

Maybelle is two years old, and let me tell you what she's doing:  she's learning to read.  She can sign and/or say 100+ words.  She can sit, unprompted, in front of the mirror in our living room and watch herself sign most of the key words to a few songs, like Dan Zanes' version of "Welcome Table" or Trip Shakespeare's "Snow Days."  Her preschool teacher told me this week that Maybelle knows all the hand motions that go with the songs they sing in school--she does better, the teacher said, than some of the kids who were in the preschool class last year and have been doing those songs for a year.

My point is not that Maybelle is brilliant--although, of course, she is.  My point is that she's brilliant because we've had high expectations for her, and we've given her the opportunity and the support to reach those high expectations.*  I say lots of things on this blog that are coming out of my ass and that I might have to rescind later, but I promise you that Maybelle will know how to send mail by herself by the age of six.  In high school, she is going to be learning things like algebra, how to make sense of a Toni Morrison novel, how to speak basic French.  She's going to be in an inclusive classroom with her age-appropriate peers, and she's going to be learning high school stuff.

I'm very glad that the kids I saw today were working with a warm, supportive adult, and that they're learning some basic life skills.  But I am so sad and outraged for them that they aren't in an inclusive class (since all the best research says this is the best way to go for kids with Down syndrome), that perhaps they weren't provided early intervention services, and that they aren't being offered higher expectations.  What more could they learn and do if they were provided the chance and the support?

*I'd like to add that one of the main reasons for our high expectations and support for Maybelle has been that we as parent and a family have been given loads of support--from our families, from friends with and without Down syndrome in their families, from fabulous therapists, from colleagues and scholars, and from our local Down Syndrome Association of the Lowcountry.  Among others.

Signing

If y'all are as interested in child signing as Biffle and I are, do we have some videos for you!  We made these for Maybelle's fabulous preschool teachers, but since they're there, the rest of you who are going to be interacting with the Ween can have a look:  "Top signs for Maybelle" and "Some less important but still good signs for Maybelle."  Notice that in the first one, Biffle tapped into his filmmaking strengths.  Very fancy.  I appropriately demonstrate not only the signs but the kinds of vocal intonations that should be used with them.

There are loads more signs she knows and can do, but we didn't want to overwhelm Ms. Kim and Ms. Ashley.

More on protesting

Here's a link to a great blog post with info about why the Jerry Lewis Telethon deserves to be protested. It also features a picture of the Charleston protest.

Protesting the Jerry Lewis Telethon

Today Biffle, Maybelle, and I took part in the 20th annual Jerry Lewis Telethon Protest in downtown Charleston.  The protest here was initiated in 1990 by Harriet McBryde Johnson, who I've written about before.  She's no longer alive, but the protest continues--small, as it's been every year, but important.  In fact, I think Charleston may have the longest-running telethon protest nationally.

We were only there briefly since Maybelle decided she was protesting not being able to have a nap.  But while we were there we had our choice of signs, and we held one that said

Every person is a 

WHOLE PERSON.  

MDA, stop insulting us.

The reason for this slogan is that Jerry Lewis has repeatedly used his telethon to talk about people with muscular dystrophy as pitiful "half people," as people who "cannot go into the workplace.  There's nothing they can do." When he was confronted with this argument about his telethon, on CBS Sunday Morning he said, "Pity? You don't want to be pitied because you're a cripple in a wheelchair? Stay in your house!"  These messages are appalling, and I take them all personally now in a way that I should have for years.

I love the whole person message.  There are a variety of arguments out there--voiced by Jerry Lewis and others--that suggest that people with disabilities aren't really fully human, fully citizens, fully worthy of dignity and respect.  Often this dismissal of full humanity takes the form of pity, which isn't always immediately evident as offensive, but it is (such as the "bless your heart" commentary we've blogged about a couple of times).  Maybe I'll make some "WHOLE PERSON" t-shirts for our family.

If you'd like to know more about what's wrong with the Jerry Lewis Telethon, click here--and you'll notice that the top link is to a piece written by Harriet McBryde Johnson.

Top nine things Catherine and I love about Jim Vredenburgh (my neuro-oncologist at Duke)

9. "We're all people." (See #1)
8. He made good (although sometimes a bit hard to follow) comments about the brain/mind connection.  Apparently my physical brain is having to negotiate with this other (tumor) material that's in there, and this may lead to tiredness.
7. One way to decrease seizures is through endorphins:  "Exercise.  Hugs.  Doing something nice for someone else."
6. He's also a big believer in de-stressing my life through such things as happy movies.
5. "Harmony is being restored in your brain."
4. He didn't bring in paperwork of any sort. He just sat there in the chair and made meaningful eye contact.*
3. He didn't even look at his watch the whole time we were in the exam room together.*
2. He emailed me at 6 p.m. on Friday to let me know that my MRI looked great.
1. We get to call him Jim.

*These were two observations Catherine made. James says she ought to be a spy, and he's probably right.

Casey Macphee

One day, while feeding Maybelle, i turned the computer around and googled John John of Sesame Street fame. You know who i'm talking about: he was a sweetly precocious child who, most famously, counted to 20 with Harry Monster. I showed that video to Maybelle, and also the one in which Harry and John John talk about up and down. We watched up and down twice, and by the end of the second run Maybelle had learned to do it herself. I figured it was a good thing, this video watching (and it has the added benefit of distracting The Ween enough that i'm able to feed her new foods without too much fuss.)

So, somewhere in the piles of literature Alison and i have collected on Down syndrome, there is a little chart that gives characteristics of people with an extra 21st chromosome, e.g. intelligence:poor; muscle tone: slightly below average to poor, and so on. The thing i love about this chart is that it includes the character trait social skills. This is what it says for that:

social skills: excellent.

This is almost universally true. I've known several people with Down syndrome and have found them on the whole to be gregarious, eager, helpful, positive and on and on. Sure, when well-meaning people say the sort of essentializing "oh, people with Down syndrome are just so happy all the time," they may be being slightly politically incorrect, but i understand why they say it.

It's not true, of course: i've lived with Maybelle now for two years and i've seen her get plenty pissed off. Thing is, most folks don't really know a person with Down syndrome well; they've only met socially, so they miss the subtle differences. I think the more nuanced observation is that many folks with DS are incredibly empathic.

I know that Maybelle has shown a real recognition of both anger and sadness since she was just a few months old. I recently cried in front of the Ween one day while we were playing together on the floor. She was just sitting there, paying me no mind and hitting buttons on one of the many music-making machines she owns. I was lost pondering some grown up stuff and got a little teary. While i'm drying my eyes with one one of her cloth diapers, i feel someone flop onto my leg. She grunted her way up into my lap in her low-muscle-tone sort of way, and the next thing i know, i'm getting a very sweet hug. She put her arms around my neck, laid her head on my shoulder, patted me softly on the back, and softly said mmm, mmm, mmm. A couple of minutes later she crawled down and went happily back to playing with her Mozart cube. Now, there's a social skill for you.

Another way The Ween exemplified this trait just recently--and the raisin dextrose for this post--was the way she reacted the first time she saw the Sesame Street video of The Ballad of Casey Macphee. Casey was an train engineer who had to get milk and cookies through a dangerous, snow covered, mountain pass. Midway through the song, the music is cut and an avalanche cuts off the way through the mountains. Train breaks squeal and snow pours down the mountain side. It's dramatic, but only in a Sesame Street sort of way. Well, The Ween, whom i sure was not able to fully follow this story on her first run through, just stops short. She stops chewing her food and is riveted to the screen. She looks very concerned, she looks over at me and says ooohhh, she looks back at the screen in concern, looks back at me. It was exactly like when you say about another person "they looked like they'd just seen a ghost."

Shortly, the music resumed, Maybelle clapped and smiled and resumed eating and watching the video. She has this reaction, to varying degrees of concern, every time she watches the video. I have fruitlessly tried to capture a stellar example of this on our Flip video thingy for weeks. I wanted to put it here on the blog for all to see. I finally got a fairly good one the other day and Alison has posted it on our vimeo site. Here it is for your viewing enjoyment:

Watching Casey McPhee from Alison, Walter, and Maybelle on Vimeo.

The latest from my neuro-oncologist at Duke:

"Definitely no tumor progression!"