This is the way LuLu is often viewed. I see it coming. A "professional" starts asking lots of questions about LuLu's behaviors, her background, our history and he/she gets that look of great interest on his/her face. The words like "research", "hypothesis", "study" start coming up more and more frequently and pretty soon I realize this person has great thesis plans based on LuLu.

So it was yesterday when I met with the school system's expert in severe behaviors. He holds a Ph.D. and is a self-proclaimed "pure behavioralist". I was (and still am) VERY apprehensive. While I understand behavioralist theory and buy into it on some basic level -- my life with LuLu has taught me so much more. In order for behavior modification to work there has to be an identifiable trigger or "cause" of the behavior that you then work to extinguish. Oh, if it were only that simple, I would have extinguished many of her behaviors years ago. The truth be told, LuLu's triggers (antecedents to the Ph.D. crowd) are internal and highly complex. And one trigger triggers another. I gave the "good doc" this example. LuLu gets on the bus to go to school. The bus air brakes and noisy diesel engine trigger her noise sensitivity. If she's had enough sleep that night and is feeling particularly strong, this expected noise isn't an issue - if she hasn't it is a definite irritant to her. She arrives at school irritated and is greeted by a teacher who makes some sort of dismissive or "corrective" comment about her irritated mood. This triggers her anxiety ("Oh no, the teacher's mad at me",) and further escalates her negative mood. Maybe she starts lashing out at this point, maybe she doesn't. Then she goes into the classroom to select her lunch choice. She doesn't like any of them and has the added worry, now that she's been put on a casein-free diet, of not choosing anything with dairy. So she obsesses a bit about this. She may have reached her tipping point or may not have...yet. Next they start reading, a subject that is especially difficult for her given her visual processing deficits. She's shipped off to another classroom where the teacher doesn't know her as well and all the other kids are older (since she's able to read at a higher level despite her obvious difficulties). The boys in the class begin acting up slightly and that bothers her both on a sensory level and on the level of knowing they are misbehaving , which produces anxiety in her, and then she blows! To the teacher there, it looks like a meltdown totally out of context. Which is the reason he says things to me like "I don't know what triggers her - must have been something that happens at home in the morning." (Yes, I'd like to strangle his young inexperienced neck for his condescending attitude!) The teacher threatens to withhold a reward or impose a consequence and LuLu's anxiety is further triggered and she explodes in a rage. The administration is called and she's suspended - further feeding her self-image (I'm bad) and depression - which also triggers the anxiety and she usually starts some severe self-injurious behaviors. The triggers are many, varied, complex and usually very internally based -- the hallmark of a child with NEUROLOGICAL DISORDERS!

Surprisingly the behavior specialist kind of "gets it" as I go through this example. He acknowledges that this complex and cumulative example of antecedents is what he's observed with her as well. He tells me the school has blown it because they are totally focused on behaviors and he agrees with me when I say things like that during the meetings. He's also a bit blown away that I'm not the "bad mother" he expected to meet (which is a whole other rant for another post someday, I'm sure!) But instead I'm an articulate, concerned, educated mom. He proceeds to describe the "experiments" he plans on conducting on LuLu. He has, in the past, said he was going to "provoke" her behaviors, but has backed off of that a bit. He's finally realizing that her parents obviously object to LuLu having experiments conducted on her to "provoke" her behaviors when it's obvious she's already in anxiety distress! IMAGINE THAT!

But then comes the $64,000 question: "Doc, after you conduct all these experiments, what if you can't determine a clear trigger or can't determine a clear intervention that extinguishes the trigger?" The "good doc" acknowledges that this sometimes happens. "How often?" In about 1 out of 5 times we do these analyses. Gee...that doesn't sound like very good odds to me. One out of 5 you end up with no resolution? Because this specialist is firmly convinced that LuLu belongs in this very restrictive (I see it as very anxiety-producing) alternative school environment, I then ask him, what happens to the 5th child who you can't develop a successful behavioral plan for that can be implemented at this school. We recommend sending them to an RTC. WHAT! And this system is "less restrictive" than my request to keep her at home until we get all the processing therapies in place and see if we can resolve some of her known frustration triggers?????

I heard someone say once that: "You'll find loads of educated people keen to sit round and swilling coffee and discussing a child's condition and the theories behind it - it's much more interesting than spending hours trying to do anything about what's wrong."

Photo by loyiu1.