Whose Problem Behavior?

(The next three posts are a small series in response to the NYS Board of Regents proposed exceptions to their regulations on the use of aversive/abusive techniques in schools. I hope they inspire you to act on this issue!)

New York State has recently released regulations defining and prohibiting aversive behavioral interventions. This is a wonderful thing. The same paper, however, states that there could be exeptions to these regulations, that it would be ok to use the appalling list of abusive strategies on some children.

This is unacceptable.

My youngest daughter has Down syndrome. Generally speaking she is a good kid, she does have a temper and can have cranky times (she's not 'always happy' :) but usually she is a pleasant person that people like.

Part of her personality is that she likes familiarity and structure--she will not go willingly from what she sees as order to what she sees as disorder. In the language of disability she has trouble with transitions. This isn't usually a big problem because when she is resisting moving from one activity to another she can quickly be referred to her schedule or someone nearby can say something like "It's time for the assembly," or "Remember, we have PE on Mondays."

Hearing this, my daughter will tap herself on the head like she should have had a V8, say something like, "Oh yeah, I almost forgot!" and step into the next activity without any further difficulty. In new situations she likes it if someone tells her what to expect. (Most people do, that is why plays and even church services have programs!)

Most of the people in my daughter's life have no problem with this. In fact most of us rely on our own systems of calendars, lists and programs to manage transitions ourselves so sharing our info with my daughter seems pretty easy.

A few years ago, however, there was a new staff person in my daughter's classroom. This gal introduced herself to me by explaining that she knew that "People with Down syndrome are very stubborn," and asking me what to do when she runs out of the building. I laughed and told her if she ran out of the building to call me as nothing like that had ever happened before. I should have known this was a sign of trouble, but I thought once she got to know my daughter things would be fine. Silly me.

This person saw my daughter's transition-related resistances as a reason for punishment rather than explanation. So instead of saying that it was time for PE, and perhaps teaching her to ask what was next on the schedule, she would give her a 'consequence' for disobedience. The results of this little change led to a disastrous year.

Since my daughter's need to understand the structure of her day wasn't being met her little balking behaviors became bigger, more dramatic and less appropriate (the way you raise your voice when someone doesn't hear you.) Each of these escalations led to more disciplinary actions.

Much more discipline and less clarity of structure in her day led to expressions of anger and crankiness (remember she is not always happy!) which led to worse resistance behaviors which brought even more consequences... The cycle went on and on until one day I actually got that call about her running out of the school.

For the first time in her life we were having conversations about appropriateness of placement, sticker systems, time-out rooms, and behavioral plans. Fortunately, it was the end of the schoolyear and the next year we had different staff in her class. All of the "discipline issues" dissappeared in the new class making it obvious in a very scary and clear way that "her behavior problems" were not hers alone.

The talk in NYS about the possible use of aversive/abusive methods as therapy scares me to death. When I express this, people who know my daughter assure me that this doesn't apply to her at all. But the people who knew her a few years ago did not feel that way. Different people see her differently and this subjective assessment could allow someone to expose her to abuse in the name of therapy someday...

What would be happening today if the same staff had remained with her past that year???

I hope your blood is running as cold as mine is right now. There can be no exceptions.