Monday, September 24, 2007

Unbowed

Today is a very big day for me. September 24th is the anniversary of the day I liberated myself from the tyranny of expectations. Let me explain. I was a young behaviour therapist, hired to consult to families, schools and agencies. I served an area, not an age group. As such in the course of a week I'd be found talking to parents about toddlers and to group homes about the elderly. I liked the diversity and I liked the challenge.

At first I didn't think much about what I did and why I did it. They had behaviours that needed controlling, I was the man for the job. I wrote token economies, I wrote differential reinforcement programmes, I wrote strategies for establishing what we called 'instructional control'. And I liked it. I liked the briefcase. I liked the status. I liked having an office. I liked coming and going as I pleased.

Then came Nate. A lovely little boy with Down Syndrome. A boy that would bring about a revolution in me and a resolution that I have since not broken. He was a joint referral from both the school and home. Seems dear old Nate had a problem with compliance. He had defiant behaviours. He was oppositional. All this and in grade 2. He was on the path to notice. Sitting in my first meeting with parent and teacher I heard story after story about this kid who refused to participate in circle (outrageous) who refused to wash his hands before dinner (unthinkable) and other childhood misdemeanours.

I took notes, organized myself. I put together a fairly simple baseline. But it didn't work. Nate had had a good week at school and a good week at home. Next week was the same. Nothing showed. They swore to me that this was an aberration. That this oppositional kid was 'manipulating' us all. The third week in there were two incidents at school and one at home. They sat there with data sheets in hand, both mom and teacher, with a 'see, see, see what Nate gets up to' look on their faces. Both school and home thought that I had enough data now to put together a 'Compliance Training' programme, oddly, so did I.

Nodding agreement while I scanned the data, I asked them to do a different form of data over the week or two it would take me to write the programme. This data sheet would have them tick off the commands he followed in his day and 'x' off the commands that he refused. They both agreed and we all felt very, very, scientific.

I read the data sheets more carefully upon return to the office. Nate's outbursts, in the cold light of calm, seemed fairly typical for a kid. I got out the calculator. Three acts of non-compliance in three weeks. That works out to ... wait ... 3 incidents divided by 3 weeks ... 1 per week. Where was this kid who did all the things I was told. Then I realized that if that meeting they gave me examples that had happened over time. I didn't ask for the frequency or regularity of the 'outbursts of defiance' I only wanted examples of them. Dumb. I called a co worker with children into my office and asked if she and some of her mommy friends could take the same data for the same week.

Intellectually interesting, but nonetheless I had a programme to write. Compliance Training. When we all next met, I had the programme in hand but I asked to see the new data sheets first. Mom and teacher handed them over, with quick calculations I found that Nate complied to just over 90 percent of requests and demands. He hesitated on about 4 percent. He refused about 5 percent of the time. I looked up at them and said, "This is wrong." I put my programme away and said that Nate was, if anything, over compliant. They were upset. I didn't care.

Back at work I took the data sheets from the mommies. I of course had no data from schools but I found that typical kids non complied and hesitated at a much, much, higher level. Some kids up to 40 percent of commands and requests were refused or hesitated in follow through. None of these kids was labled a behaviour problem, an oppositional child. None of them was on a programme. In fact some of the parents were outright a little proud of their child's independent streak. Remarks like 'no one pushes her around' and 'he knows how to stick up for himself' were written by parents in the margins.

But here's this kid who lives in the margins and he's got his behaviour under a microscope. I went to one more meeting with the school and with the mother. I told them that Nate's behaviour was better than the norm, that in fact I felt he was over-compliant, that he needed to learn how to stick up to both of them a little bit more. I felt that he was being groomed as a victim and that I would have no part in that grooming. I told them then, what I believe now. Non-compliance is a skill, not a behaviour. Aggression is a skill, not a behaviour. That if they wanted Nate to grow up well, they had to teach him how to be defiant, to be a problem when he needed to be a problem. That was a programme I would write. I was ejected from the school.

My boss got a call.

I was in trouble. I tried to explain my reasoning. She didn't care. I tried to say that someone had to confront the teacher and the family. She didn't agree. I tried to say that at times it was more important to be an advocate not a programmer. She didn't think that was our job. The end result was that the case was taken from me and given to another therapist. I took my programme out of the file before passing it on. I destroyed it. If this kid was brought to his knees it wouldn't be because of me.

Now I was asked to write a letter of apology to the school with a copy to the family. "Fire me," I said, "I won't do it."

The therapist who got the case met the family, met the school and met Nate. And turned down the request to do a programme. One could sense that a moment had come that had changed us all.

After much furor a decision was made.

We would never, as an agency, write a compliance programme again.

We'd work on cooperation.

Negotiation even.

But not compliance.

It was on September 24th that I decided that there was a line I would not cross. And didn't. It was then that I realized I would always have to look at my feet before making a move, to see if that line appeared again. It has, often. And it is on the anniversary of that date that every year, I remember Nate, remember the fight, remember the decision. I ask myself again, am I being careful? Really careful with the trust given to me. And every year I discover ...

There is a line I will not cross.

Nate would be an adult now.

I hope he's unbowed.

16 comments:

wendy said...

September 24 should be declared a national holiday...or at least "non-compliance day"! Why is it that people with developmental disabilities are expected to "comply" (read: "obey") every arbitrary request or direction they receive?? Maybe I'll go to work and tell all the people who live in the home that today they should say "no" to staff and each other at least once!

Ashley's Mom said...

Here here! My feelings exactly. I blogged late last year on this subject also:

http://pipecleanerdreams.blogspot.com/2006/12/compliance.html

I agree with September 24th being declared a national holiday - both in Canada and the US!

Ashley's Mom said...

Not sure my link came through. Here it is again:
Compliance blog

Casdok said...

Can we have a national holiday here in the UK to!!
I think my sons motto is 'do not comply'!

luvmypeanut said...

Dave, you have done it again! Another home run! And I say this on a day when my son was non compliant with his meds, non compliant with his breathing treatment and non compliant with putting his shoes on this morning. LOL!

Paul said...

That's a memorable one. These things can get complicated, I know, having been an elementary school counselor for 23 years before finally becoming too disabled to work four years ago.

Kei said...

Bravo and thank you!
I always worried when any of my children became too compliant. Thank goodness they realized they have choices and can make their own. Including William, who has recently decided that to emphasize when he does not want to comply, he dramatically folds his arms over his chest and says, "No"

Sharon said...

Thank you for this. I agree with all the previous comments.

IMO, the most important thing a child learns is how to communicate 'NO'.

Belinda said...

Wow--this reminded me of Rosa Parks, the "Mother of the Civil Rights Movement," on the bus in Alabama.

To have the eyes to "see" the guts to do something about it--and the courage to swim upstream. That inspires me.

Anonymous said...

amazing.
-tara

Jennifer Justice said...

Thanks so much for this essay! I plan on sharing it with my colleagues.

Tim said...

powerful post! found the site off of Reimer's blog. I particularly liked your lines here:

I felt he was over-compliant, that he needed to learn how to stick up to both of them a little bit more. I felt that he was being groomed as a victim and that I would have no part in that grooming.

Jeff said...

Dave

All I can say is Thanks!

Jacqui said...

Dave, that was one of your best posts (which is hard to say cause they are all so good). Thanks so much and I'm sorry, but I'm going to have to link you.

Nicole said...

Dave, I've been missing you! ;) My life is crazy right now. But in the midst I am thankful for my non compliant kiddo whose fierce determination amazes me daily. I used you in my post today!
http://all4gals.blogspot.com/2007/09/capable-of-independence.html

Usually Stunning said...

AMEN. I hope I find a mentor like you when I finally break out into the workforce.

-- Carolyn (future OT)