A few days ago a thought began to grow and dominate more of my time. It wasn't really a new thought but it started to take on renewed focus. It began, as a lot of my thoughts do, as an off-shoot of what was a theoretically humorous Facebook status update. It would have gone something like this: You know the bar is set pretty low when the day your first-grader drops the f-bomb in the middle of class is described as a "pretty good day" by his teachers and it is in fact way better than the day his brother had.
Because the day was so horribly disastrous for his brother I wasn't much in the mood to post something funny. Instead, I was much more inclined to obsess over the current state of affairs at school, how we evaluate the boys and the various "bars" we are continually setting for them.
What I concluded was that, particularly with one of the boys, no ordinary seven year-old is subjected to more judgment and evaluation than he is in the course of an ordinary day. And sadly and ironically perhaps no child is more ill-equipped to emotionally handle this judgement or potential failure than he is. And given his deficits in the area of impulse control and deficits in his ability to understand the actions, expectations and motivations of others he is also far more likely than most to have the occasional slip-up during the course of the day. Slip-ups are an expected outcome, a result of his Asperger's condition. Given these three points it seems we've put him in a shockingly unfair situation. Unfair and harmful.
He is subjected to this continued evaluation both at home and at school, although at home it is hopefully more subtle or hidden. At home I keep a "behavior notebook" in which I daily track his behavior along with his diet, any medical interventions of note and any observable health issues. Upon picking the boys up from school, which I do primarily so I can receive direct feedback from their teachers because the boy's reports are typically incomplete or unreliable, my first action (before I even leave the parking lot most days) is to send a text message to my wife with a brief summary of their days. Good or bad. Black or white. Some days we can't even wait that long. I might email the school on some pretext or another in hopes of getting an update, an answer to the eternal question, "how is he doing?" Or my wife will call me, often with the same question, "have you heard anything from school today?"
At school the ever-present judgement is even worse, or at least much more obvious to him. And worse by far than what other children experience. He is on a "star-system." Judging by the fact that this system was employed both in NC and here in NY and that I've heard others mention it, I suspect that it is a pretty standard, if not universal, aspect of IEPs for children with Asperger's. A standard part of the tool kit, to be sure. In short, his day is broken down into 12 segments of time, divided into two halves. If he stays on task and is not disruptive to the class he receives a star. If he receives 5 stars in a half-day, he gets a prize. A good day merits two prizes. I can see both hands full as he comes down the hall at the end of a "good day" and I breathe a sigh of relief. Some days it is all I can do to keep from crying in front of a lobby full of moms when I see two hands full.
On the plus side, this system gives him a clear and definable goal and a short enough time period that it is achievable. The notion of simply "being good at school" makes no sense to him and is pointless. Tangible things are better. Also, all this judgement can provide truly useful data. There is a real need to evaluate different interventions and I prefer to depend on data rather than anecdotes subject to the moods and recollections of various people.
Unfortunately, it also means that we spend a great deal more time evaluating life, as opposed to living it. Not very Buddhist. And it serves to continually undermine my efforts to teach the boys that the world simply isn't all black and white, all right or all wrong, all glorious triumph or devastating failure. Because regardless of what happened positive or negative, the end of the day comes down to a binary judgement. Prize or no prize. Thumbs up or thumbs down.
In fact, I believe this constant judgement is actually the cause of, or at least a contributor to, a lot of the problems we've seen because he has a truly pathological and debilitating fear of failure or losing. This is tough enough for your average seven year-old, for instance, when the simplest gym or playground game carries the ugly specter of "losing". All kids are bound to have the occasional meltdown or shed a tear over a failure or loss. But with the "star system" and the everyday potential for reward every minute carries with it the potential for failure. The larger the reward the greater the anxiety. And unfortunately the fear of failure is so pronounced that to avoid it he would prefer willful self-destruction, which is at least under his control.
The result of this system has become an out-of-control spiral. Confirming his view of the world his days are either stunning successes or catastrophic failures. This isn't merely anecdote. I have the data I abhor to back me up. Of the last two months, 65% of his "half-days" are prize-winning successes. These 5+ mornings or afternoons are always reported to me as being "a great morning," etc. In contrast, more than a quarter of halves are 2 stars or less; catastrophic periods in which he spends more time removed from the class, forcibly at times, than in class. This leaves very few days in which it just goes a little bad, a couple slip-ups. When it starts to go bad, it appears to go all the way bad in a vast majority of cases. And, in fact, I've had to pick him up from school early more often in the last two months when he has had a 4-star half day.
Given that repeated perfection is a rather absurd goal for a seven year-old boy with Asperger's what I'd like to see is more 4s. But, in reality I think as long as the star system exists, there will be no 4s. Because in his reality a 4 represents failure, complete and absolute. 4 means "no prize." So he's right to conclude that there is no difference between 4 and 0 because there isn't. He, therefore, is likely to fight like hell when he sees that star disappear, the star that determines complete success and complete failure. And he does. And he often doesn't recover.
So, the million dollar question is how do we help this boy without making him feel like a failure? How to teach, without teaching him he is bad? How do we present expectations without presenting the fact that he fails to meet these expectations? How do we correct without the sense of punishment that so disables him? I wish I had an answer to present, but I don't. I do know that we'd do better to forget the "star-system" and better to not worry so much about raising or lowering the bar and trying to find a way just to be and be helpful to him.
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