Things that bug me

I've talked about how we had a pretty good IEP meeting with the school this year. But there are a few things that still bug me. As these things aren't what I consider the "most important" things, we haven't pushed real hard on them up to this point. But they're still important, so we are still formulating how to go about effecting change over the next year.

The first thing is how Buddy Boy is treated at lunch. Sometimes he doesn't want to eat lunch. He takes an ADHD med to help him concentrate at school (it works reasonably well), but one of its side effects is that it decreases his appetite during the day. Sometimes he's hungry and wants to eat, sometimes he doesn't. We don't care, as Liz always gets a good breakfast in him, and he eats when he gets home (after his med has worn off).

The school, however, has taken to punishing him when he doesn't eat his lunch. If he doesn't eat his lunch, they won't let him go to recess, which is his next thing after lunch. Liz has tried explaining this to them, but they still don't get it. Basically this bothers me on a couple of different fronts. First, he's our kid, not theirs. He's of normal height and weight. There is no medical reason that he needs to eat lunch. And we've told them its OK if he doesn't. But they think that their judgement should supercede ours in this matter. What's up with that? Secondly, we place a high value on recess. We think it helps to have physical exercise, opportunities for social stimulation, and just plain time to wind down in the middle of the day. So withholding recess is (in our minds) withholding a vital part of what we consider therapy and teaching for Buddy Boy.

The next thing is that they don't have anyone walk him from class to class, then "write him up" when he doesn't get to where he's going. I think this is one of those things that comes from assumptions being made because he is very verbal. This last week he got distracted/interested in something outside while transferring from one room to the next. So he left the building. This is the first time he's left the building this year. This, of course, caused a mini-panic at the school, resulting in 6 people going after him, and Buddy Boy initially running from them before returning to the building. For this he got written up and spent the rest of the day doing "independent work", rather than being taught by teachers.

I'm sorry, but easy distractability is part of who Buddy Boy is. And we think it's necessary for the school to make sure that he gets from one room to another. I don't think he's being "bad" when he takes off, and therefore don't think he should be punished when he does. Just becuase he's verbal, doesn't mean his internal regulation is up to snuff when compared to his same aged peers in 1st grade. I think it's something they need to deal with, and not make a discipline issue.

Finally (for now) one thing really bugs me personally. It's something that his school did last year, and continues at his school this year. At every IEP meeting, they ask us what meds Buddy Boy is on. Like it's any of their business. Haven't they heard about patient confidentiality? And what are they doing with that information? The school nurse needs to know what to give him when. Beyond that, they have no need to know anything.

At this year's meeting they asked us what he was on, and I bit my tongue and let Liz respond. One of the meds he's on is Guanfacine. So Liz mentions this, and one of the teachers asks "Isn't that cough medicine?" No, I think. that would be Guaifenesin. Liz justs says no, Guanfacine is a blood pressure medicine that is sometimes used with autisitics.

I'm a doctor. I practice in a field where knowing drugs is central to what I do. These people are teachers. Every time they ask about Buddy Boy's meds I want to say "Why do want this information? And what will you do with it? Can you even interpret it? Because unless you can tell me the mechanism of action of each drug, how it interacts with other drugs, what its alpha and beta half lives are, and volume of distribution, you have absolutely no right to ask that. Because any decision you may make because of your limited knowledge may be totally wrong, and deleterious to my son."

What makes me most upset about the asking about the meds thing is, if they're making like they are knowledgeable about a field that I obviously know they are not, what other things are they equally unknowledgeable about that they think they know?

5-4-3-2-1

Of all the ways we've tried to transition Buddy Boy from one task to another, the one that has consistently worked is the simple statement that we need to stop doing "x", and now we will be doing "y", then counting backwards from 5.

Buddy Boy gets absorbed in activities, and transitions have always been hard on us all. His reactions are not nearly as severe as they used to be, but moving from one activitiy to another is still quite challenging.

We've tried (and still do) give 5 minute/3 minute/1 minute warnings. We've given choices for activities. We've tried premacking. Written schedules, clocks, positive reinforcement. Verbal explanation of the 5 w's , negotiation, and even just saying "We're going to do this now. Let's go." All of the above methods (and others I may have forgotten to mention) have been tried, and all have worked at various times to one extant or another. But none works as predictably as the counting down method.

I've tried to get away from it (it seems a bit mechanical and childish to be using with a 7 year old), but Buddy Boy doesn't seem to disengage as easily from one thing to start another without this prompt.

I wonder what exactly there is about "doing the count" that gets him to go with the flow. Is it the finality of it? I mean, it's not as if there are any dire consequences if he fails to comply. And when there are announced consequences, this method still works better than all others.

The method even works fairly well if I just use my fingers to count backwards, as I'll sometimes do rather than shouting out a countdown across a playground. So it's not the tone of my voice.

Perhaps it's the simplicity of it. Perhaps Buddy Boy interprets everything else as being open to negotiation (he loves to negotiate-which is usually viewed by us as a good thing), but he receives the countdown as singling the end of all negotiation and time to move on. I don't know.

We still try to use other methods (I like to give my kids as much autonomy as possible, and this method is just pure directive), but it's good to know that we have something that does work reliably.