9.30.2010

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.

7 comments:

Erica said...

This makes me so mad too! One of my neighbors growing up adopted two special needs children who were severely physically and mentally challenged. The state of Louisiana basically told her that both would just be vegetables, then they were shocked when both boys learned to speak and one learned to read braille and play music. Charlotte just simply did not listen to the prevailing opinions and did what she would have with any other child, she encouraged them and taught them!

Elizabeth Schlaeger said...

I know for a fact that many, many people read an appreciate your blog and the things you and Walter have to say, but...

I just wanted to say thank you.

I'm going to look for the Temple Grandin movie. As a daughter of a farmer, and having raised bottle babies, that sounds really intriguing!

Myrlyn said...

*results not typical.

Why not expect your kid to be amazing? You think your 'normal' kid can be a bloody astronaut, despite the fact that you need a hundred and sixty IQ and all the strength and training of an olympic gold medal winning athlete, none of which is 'expected'. You don't hear anyone telling the parents of 'normal' children that their kid won't be president or something.

Why the hell won't you think someone who's not that far down on the scale to read?
I mean, Dubya got presidency, so clearly we don't hold people up to the whole thing about goals relating to ability anyway.

Also, it hurts my feelings to think that NPR did something that awful. I like NPR, and I wouldn't have believed it if I had heard it from someone that wasn't you.

Alison said...

Myrlyn--I'm equally sad about the NPR comment! I think as much as anything it's evidence of how recently we're coming to see these disabilities differently. Even in 2002 educated, well-meaning folks thought autism meant this person probably won't have any sort of meaningful life.

Erica--hurray for your neighbor Charlotte! I applaud her good instincts to raise her children like two children she valued and loved.

And B, you'll have to let me know what you think of Temple Grandin. I think you'll find her to be a fascinating and cool woman! And I hope you like the depiction of cows (they're clear in the "making of" that no cows were harmed!).

Quiche said...

I'm going to be on the lookout for the movie as well! I just recognized Temple Grandin's name from having seen it on the Hoagies' Gifted Education Page, her book listed on the resource page for visual-spatial learners (:

http://www.hoagiesgifted.org/visual-spatial.htm

-glad I had the page bookmarked because I'm going to need a visual-spatial method to learn college math!

Hard to believe there have been/are people who have excluding teaching children with Down Syndrome how to read!?!

We bought some Picture Me Reading cards (sight words with pictures made with the letter forms) for my son Baird, who is dyslexic (more severe than I), a visual-spatial learner like myself. He is doing well with reading now in first grade...it finally "clicked" as you said. Maybelle is doing better than Baird did at that age (:

The Mom said...

I found bunch of videos of Temple Grandin on YouTube, and watched a 5-part documentary by the BBC last night - I think they were over 9 minutes apiece. I was just going to watch one, and got hooked. I'll also be looking for the movie. Let us know if any of you find a source for it.

Elizabeth Schlaeger said...

This is a few days after the fact, but... I saw "Temple Grandin" advertised on the RedBox box closest to my house - it was not available for rental at the time I was there, but how cool that RedBox has it!?

Alison - I'll definitely let you know what my impressions and thoughts are after watching it. :)