Sunday, April 08, 2012

The Willful Child

On Tuesday the principal of our girl's school called because our girl has been more anxious than usual of late — she's fallen back into that habit of raising her hand and frantically waving to be called on.  She's been irritable and snaps at classmates and teachers. The principal was also calling to talk about the upcoming IEP meeting: about whether we could somehow get the Department of Education to support summer services for our girl, or whether we should be pushing to move her to a school with an 11-month program and a much longer commute.

So once again, we arrived back at the question of what is an appropriate setting for our girl. That has been the question that has animated this blog from the outset: what sort of world will work for a girl on the edges of the autism spectrum?

When I'm confronted with these very difficult life questions — the kind of questions that ask you to make decisions on behalf of someone you love without really having any idea of what would be best (or even good enough) — I sometimes run in the opposite direction.  Instead of going to one of the many Autism Awareness Month events around the city where the Empire State Building was bathed in blue light, I ran full tilt away from the problems at hand. Instead of going to an autism event, I went to hear British cultural theorist Sara Ahmed talk about her project "The Willfulness Archive."

Ahmed is exploring the role of willfulness in the struggle against oppression and collecting these stories of willful subjects in what she envisions as a mobile archive. She opened her talk by reading a tale called "The Willful Child," from the Brothers Grimm:
Once upon a time there was a child who was willful, and would not doeth as her mother wished. For this reason God had no pleasure in her, and let her become ill, and no doctor could do her any good, and in a short time she lay on her death-bed. When she had been lowered into her grave, and the earth was spread over her, all at once her arm came out again, and stretched upwards, and when they had put it in and spread fresh earth over it, it was all to no purpose, for the arm always came out again. Then the mother herself was obliged to go to the grave, and strike the arm with a rod, and when she had done that, it was drawn in, and then at last the child had rest beneath the ground.
Tale #117 is among the grimmest of the Grimms' household tales, and I found the story particularly difficult to hear. Ahmed unpacked the story quite brilliantly as a metonym for the willfulness of oppressed and marginalized persons who refuse to go along and get along. I heard the tale somewhat more literally: as an account of the struggle of autistic children and their mothers carried down to us through folklore.

At first my thoughts went to the most literal cases of the mothers (and fathers) who murder their children on the spectrum — the ones who beat them or strangle them or poison them or toss them out of windows or off of bridges. My thoughts went to the newspaper headlines that try to explain what everyone imagines as unthinkable: the murder of children who fail to conform and seem to be never at rest, even in their sleep.

Then, following on path of explication that Ahmed explored, I asked myself, what is the rod that the mother wields?  Is it the psychopharmacology that makes it possible for our girl to sit still enough to do her school work, make her paintings, and engage in the occasional conversation? Is it the applied behavioral analysis that made it possible for her to gain some capacity to comply?  Is it the school bell that startles her into the conformity required by the school day? Is it the very diagnoses of autism, of ADHD, of Oppositional Defiance Disorder, that takes her neurology and renders it as pathology.

Is it the incapacity to comply what we are diagnosing when we diagnose these "disorders"? Should cultivating the capacity to go along to get along always be viewed as oppression? And if not, when is it not oppression?  How (or rather, to what extent) is the parent's desire to ease a child's way in the world hijacked by other forces that wish to exact a complacent conformity?

The willful girl's arm rises from the grave. Our girl waves her raised hand frantically in the hope of being able to remember her answer long enough to have it in mind when she's called on. Our girl raises her hand because she longs to belong, longs to get along, longs to be able to go along. So would another two months of school each year, another two months where there is so much to go along with, be a way to help her thrive, or just an extended blow to crush her into a deadened conformity?

Today is a religious holiday of rebirth: a day for writing of bunnies and bird's eggs, of renewal and of budding possibilities. The ghastly arm rising from the grave is a very different sort of resurrection than one typically imagines on a day set aside by the Christian religions for celebrating renewal and rebirth. Partial, grasping, longing, the willful child reaches out to connect, to find a way to grow tall and strong. How do we reach back with open arms?


goodfountain said...

I don't even know what to say about this. It's very powerful to me. You articulated some of my ongoing internal struggles. Wanting to teach my daughter how to get along yet celebrate her for the joyful person she is. How do you maintain a child's self-esteem in the face of "don't do that" and "don't say that"?

Very excellent writing.

MothersVox said...

Thanks for stopping by and reading, goodfountain. I think these are the hardest questions I ever have to ask, and I wind up circling back to them again and again on this blog. I doubt there will be anything more than provisional answers.

What we try (but don't always succeed with) is to give our girl some sort of reason for why another behavior might work better for her. When she used to scream in a very frightening way we tried to help her see what it looked like and how scary it was for the other kids (not to mention the teachers). We also try to always get to the bottom of why she does what she does -- anxiety, over stimulation, too much language.

But I'm sure you do this with your girl, too.

It's quite the existential adventure, isn't it? How not to operate in bad faith or double-heartedness!?! It's ever the question!

Good wishes to you and your family.

Anonymous said...

What a fascinating article. It really resonates with me, raising a precociously bright 6 year old boy on the edges of the spectrum. He recognizes the coercive nature of the reward systems we have tried. One day he to me, "I just want to do my homework to do it, not to earn television time!"

MothersVox said...

Anonymous! Love your boy for his wise insight!

There is a book by Alfie Kohn called Punished By Rewards that says in a couple of hundred pages what your kid said in a sentence. It's a good book -- spot on about all these rewards and punishments. There is also the Daniel Pink TEDtalk about the problem of using rewards to foster creative thinking (it doesn't work, and there are loads of data to support it). Check is out if you want to see a great clip . . . also, he's super funny. I use this in my classes all the time when we talk about grading.

Kohn book:
Daniel Pink TEDtalk:

And on the other hand, ABA really helped us get our girl the mental space to stop before freaking out in the days of her meltdowns. I wonder if ABA is good for some kinds of learning but not for other kinds (as in the Daniel Pink talk, where rewards work on rote tasks, but not on creative or higher order tasks).

audball said...

This was such a beautiful entry and it really resonates with me and my husband as well. These are the questions that keep me up at night. How will she get along? How can I help her? Does she feel supported or lost? My husband has often said that we would pay good money for that crystal ball that would give us all the answers, or a brief glimpse into the future...

As for your girl, do you think she would have a preference for one format of school over the other? My DD would actually prefer school year round, with maybe a one month break -- she knows that when she gets "in a groove", she is more likely to succeed.

And do you think that M is getting nervous about the end of the school year? Is she sensing that changes are coming? I remember that was when my girl started getting anxious when she was at our neighborhood school...there was only a brief period of "calm" - from the months of November through February (and even those months were challenging with holidays).

Russell Hornig-Rohan said...

I found the article interesting because boys who are on the autism spectrum usually have a stronger tendency to raise their hands in class at inappropriate times than girls do. I also found the article interesting because girls can sometimes raise their hands in class at inappropriate times but to a lesser degree. The Paddle for Autism Awareness is taking place on Saturday August 4th from 9:00 A.M. to 4:00 P.M. at Valentino Park in Red Hook, Brooklyn.

susan said...

Interesting stuff, thank you for sharing this as it helps others deal with this

Anonymous said...

This is one of the most insightful pieces I have read. I too struggle with the question of how necessary it is to conform to an artificial structure for my strong willed ADHD child. I too am beginning to wonder if how much other people call autism is really not the childs issue but a societal one whereby society is ill equipped to handle brilliant strongwilled people who think / learn and process differently. I am also beginning to wonder how much of whats called Autism really isnt ADHD or a more acute form of ADHD in a lot of children where their brain just gets stuck.

I think with the pressures that schools are under with testing and what not more and more they dont want to deal with anyone that is smart or wierd or different. By pushing your child off to a different school they get them off the testing roster and dont have to worry about their scores being brought down. A lot of these children are metagifted and should be educated and appreciated as such, not castigated and put aside because they know the answer to every question and want to share their knowledge and help others in the class learn

MothersVox said...

Thanks Anonymous, for your kind words! I'm sorry that your comment has sat unmoderated for so long. It has been a crazy year for us and I will write more about that soon. And especially will be writing about testing. It's ruining our lives.