Expectations

As the title suggests, a theme is emerging in my thinking these days.

I watched the movie Temple Grandin this week, the HBO film based on the books Temple Grandin has written about her life experiences.  Temple Grandin,as most of the readers of this blog probably know, is a woman with autism who's a professor at Colorado State University and has revolutionized the way that livestock are treated in the United States.  She's also revolutionized the way that autism is viewed and treated.

We're in such new terrain with a lot of cognitive and developmental disabilities.  We're only just emerging from a world where the reaction to these sorts of disabilities was institutionalization.  Grandin's doctor urged her family to institutionalize her when she was a child, but they didn't.  Families like hers are "saints and sages," as another writer says, bucking the medical establishment and treating their children like people in the world.  Folks with autism weren't considered people in the world a few decades ago, and so it was a big surprise to lots of people when Grandin demonstrated that she was, in fact, a person--in her case, a person who could communicate her perspective on the world, and who could see the needs and habits of livestock far more clearly than folks before her had done.

Okay, my point here is this:  back in 2002, when McDonald's started using Grandin's techniques with their livestock, there was a report on her on NPR.  I remember hearing this report, including an interview with Grandin about how different her livestock handling systems were, and how effective they were at respecting animals' peace and quality of life up until the moment of their death.  After the interview, the NPR reporters (perhaps it was just the local crew, because this info isn't on the web broadcast) were careful to make a point that I remember now, a decade later:

One of the issues surrounding Grandin is that parents of kids with autism are seeing her as a potential role model for their kids, and doctors want to be sure that folks recognize that Grandin is an exception to the rule.  Parents of kids with autism can't and shouldn't expect their kids to do what Grandin has done.*

At the time that this piece aired, disabilities in general weren't on my radar.  And yet this was a big enough point that I remembered it.  And as I watched the movie Temple Grandin, this point came back to me.

When I heard the NPR piece, I thought, "Wow, what a shame that these poor parents are so deluded."  Now I'm able to recognize that the correct response is, How dare they say that!  How dare NPR tell folks listening to Grandin's amazing story that she's an exception.  Don't get the crazy idea, parents, that your kid with autism might actually be a full person in the world!  Your kid is probably way too fucked up to be helped, so don't get big ideas.

A related point:  you'll remember the great experience I had a few weeks back at the Downs Ed conference in Atlanta.  Downs Ed is a big advocate of kids with Down syndrome being taught to read.  The visual learning skills of people with Down syndrome are generally much stronger than their auditory learning skills, and so reading is something that's often possible and a helpful tool.  Due to this research, and the urging of one friend in particular, we've been working on helping Maybelle to read for a long time--maybe a year?  In the last week or so, it's started to click for her.  She can now read probably 10 words, and since she seems to have gotten the concept, she's learning new ones faster and faster.

I'm doing loads of videos of her reading.  Here's one from tonight (be warned that there are some graphic toast-eating moments throughout the video):

At the Downs Ed conference, they showed us videos of kids they work with, many of whom go to public school and are labeled "exceptional readers" within their fully inclusive classrooms.  They're certainly considered "exceptional" for kids with Down syndrome.  The point the presenters were quick to make was this:

Exceptional readers are becoming less exceptional as we train kids with Down syndrome more effectively.

The kids they work with aren't "exceptional" kids.  They're just kids in the world, being offered high expectations and the support to reach them.  They also had this to say:

Changing how we treat kids with Down syndrome changes the profile.  There is no reason that any kid with Down syndrome is locked into any "profile."

If the widespread belief--and the official "profile"--is that kids with Down syndrome can't read, then you simply might not try to teach your kid to read.  If you're being told by The Powers That Be that there's no way in the world your child could end up like Temple Grandin, you might well underestimate your child and not offer your child opportunities, support, hope, and the space to grow.  But as we change our expectations and our behaviors, the profile will change, and it makes it easier for people to become the fullest version of who they are.

Okay, that's all I've got for tonight.

*Note that the indented statements in this post aren't quotes--just my own paraphrases.

Random coolness

Longtime comment-readers of the blog may have noticed thoughtful, passionate comments from Quiche.  I won't identify her since I haven't asked her permission, but I think I can safely say that she's a talented graphic artist, and it is our great good fortune that she was inspired to create some t-shirt logos based on the sign Biffle, Maybelle, and I held at the telethon protest.  The logos say "WHOLE PERSON" and "COMPLETE PERSON," and you can now put them on virtually any product under the sun at a Cafe Press website I just created:  http://www.cafepress.com/WholePerson.

Just fyi, I have purchased WHOLE PERSON shirts for Maybelle and me to wear to the Buddy Walk.  Biffle has a longstanding policy of not wearing shirts with anything written on them, so he'll be there in some very boring shirt of his own.

Buddy Walk

I've fallen down a bit on my blogging duty here by forgetting to let you all know about a big event that's happening in Charleston (and all over the nation) in a little over a week:  the Buddy Walk, which raises awareness and acceptance re: Down syndrome.  Only those readers who live in NYC or Chicago will have the opportunity to participate in a bigger walk than the one in Charleston--we're third in the nation.  Amazing, right? 

It's truly great fun, and you should all go.  This will be Maybelle's third Buddy Walk, and this year she will actually be walking!  Not the whole mile, mind you, but some of it.  Last year Maybelle had a bunch of friends at the walk, including Eamon and Rosemary, in strollers to her right in this picture, both of whom are friends with Down syndrome, and Nina and Adam, walking flanking her stroller, who are friends without Down syndrome.  This year we have even more friends, many of whom have Down syndrome, and we may actually get the Ween up from her afternoon nap early to get as much time as we can at the party.

This is also a good post in which to let you know the news that Kevin forwarded to Trey, and Trey forwarded to me (always good to have a network):  on Wednesday of this week, the House approved a bill called Rosa's Law that will remove the term "mental retardation" from federal legislation, replacing it with "intellectual disability."  This is a lovely move forward, as the term "mental retardation" has been a slur rather than a neutral descriptive term for years and years now.  Everybody out there:  just stop using it.  Stop.

Foul, foul mood

Maybelle has been sick since Sunday, and I'm beginning to get how much that sucks.  This morning, I yelled at my dog because I was so mad at a man in the Rite Aid parking lot.  And I mean, really yelled.  I might have actually called Benya a very crude term because I wanted to call the man in the parking lot that crude term.  At least my interpersonal skills were enough in place that I knew I wasn't allowed to call the man himself that crude term, since all he had done was (fairly rudely, but still) asked that I get my dog's head out of his way so that he could get into his car.

At the time, I was being pulled across the parking lot by a very demanding small person whose runny nose was dripping blood because I'd accidentally yanked the scab off while wiping it.  With my shirt.  I was somewhere fairly grim:  the end of my rope?  My boiling point?  Hard to say which metaphor fits the best, but it was not the time to be even the tiniest bit rude to me.

Poor Benya.  I apologized profusely to her later, and I'm glad to say that she seemed fairly untraumatized.*  But all the rest of you:  be extra, extra nice to me today.

*The one bright side to this story is that Maybelle, who I'd hiked up onto my hip at that point so that we could quickly go back to the car and berate the innocent dog, found my yelling funny.  She giggled.  This is a sign to me that she's never, ever been yelled at like that, and she didn't perceive those noises coming from me as at all threatening to her.  Whew.

Bangs

Here's the second substanceless post of the weekend. 

When, you might ask yourself, was the last time Alison had bangs?  1986 is the answer.  Ninth grade.  I looked cool for about six months, and then I started growing them out, and that was the end of that.

Until now.  Here is the sad state of affairs:  my surgery haircut has decided to become bangs.  There's not a thing I can do about it.  I brush the little curls back continuously throughout the day, and they keep drifting down, as though they're a deliberate look of some sort.  They're not true bangs, just a tuft, a mini-bang.

Biffle is being sweet and saying he thinks it's cute, but I'm disgusted.  Claire and Marguerite both suggested I adopt a funky tiny-barrette look, but I think I'm at least a decade too old for that.  So this is my look, for the moment.  Maybe I should go ahead and play it up as a Superman-style curl.

Coffee

This week has been pretty intense (nothing worrisome--just a lot of work stuff), so instead of thoughtful posts, you're going to get some random slice of life blogging this weekend.

For example, here's a story from this morning. This story might illustrate children's incredible imitative capacities, or my vaguely incompetent parenting.  You decide.

Every morning of her life (since she was discharged from the NICU), Maybelle has watched me drink coffee--most often out of this mug.  In the past few days, she's become really interested in the coffee, reaching for it, signing "coffee" and trying to say it.  Normally I tell her, "This is for mama.  Here's your drink," and give her her sippy cup of water.  This morning I thought, "What the hell," and said, "Do you want to try some coffee?  I don't think you're going to like it."

She enthusiastically reached for the cup, so I helped her to take a swallow.  I expected her to make a terrible (but funny) face and spit it out, even going so far as trying to scrape it off her tongue, as she does with such abominations as grapes.  Instead, she looked up, smiling, and said, "Mmmmm!"

Just exactly what I do every single morning when I have my first sip of coffee.

That was adorable enough that I decided Maybelle needs her own cup of coffee, so I got her a little tiny mug of warm milk with cinnamon.  I told her which was Maybelle's coffee, and which was mama's coffee, and she's working hard on saying both those things.  Biffle did point out that what she's drinking isn't coffee, and that it might not be fair to tell her that it is.  But, you know, I've got to get my kicks somehow, and she'll eventually learn, and develop her own coffee snobbishness.  Or perhaps decide to rebel by being a Diet Coke drinker.

Downs Ed conference in Atlanta

Since I'm still apparently someone who can't make effective use of her actual Twitter site, I thought I'd do another round of I'm out of town, and here's what I'd tweet if I were using Twitter.  (Actually, this is partially I'm out of town, and here are text messages I sent Biffle today.)

• Just met Sue Buckley in breakfast buffet!  Did not rave nearly enough because she seemed tired.  Maybe later I'll have the chance to tell her how much her work has meant to us.  Sue Buckley!!
• I'm learning so much!  One thing I've learned is that you and I rock as parents to the Ween.  We have more to do.  Singing=great.
• Just had lunch with the woman who made Deedah!  She is super-excited about the CofC REACH Program.

And some quotes from Sue Buckley's keynote talk at the end of the day:

• Our job is "preparing our youngsters to have as ordinary a life as possible."  
• "The most important thing for a child with Down syndrome is to be a much-loved member of a happy, ordinary family."
• About her daughter, Roberta, who underwent a paradigm shift when she moved out and started dating, becoming more independent than Sue ever knew she could be:  "All that changed around her were opportunities and attitudes."  In other words, Roberta's IQ didn't change; her physical abilities didn't change.  She just finally had the space, the motivation, and the support to be her own whole person.
• Sue went on to observe "how underestimated so many people are."  She underestimated her own daughter, but has since learned so much from her.
• She demanded that we have "high expectations for our children being part of the social world and leading an ordinary life."
• She also pointed out that we live in a democracy, and it's our responsibility to demand and create the schools and communities that our children deserve.

Ultimately, the theme for her entire talk was HIGH EXPECTATIONS!*  And, you know, ordinariness.  Biffle and I may or may not have the ordinary part down, but the rest is good.  I did get the chance to talk with her briefly after her keynote, and I was happy to get to share how much we appreciate and have benefited from her research and activism.

I feel so validated, and also on a little bit of a post-conference buzz.

*It's worth noting that the "best research" I cited in my previous post, the research that proves the effectiveness of inclusion, was done, in part, by Sue Buckley.

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.