How do we spell hell? I-E-P

I decided to take Barbara‘s advice and bring cookies to the IEP. Unfortunately, I could not find any that looked good, so while in the supermarket I picked up a box of brownie mix. Walking home, I stopped at the high school playground and bought some good “herbs” to cook in the brownies … the saving grace …

Pearlsky’s teacher was there, along with her aide, Pearlsky was in her stander, four therapists (speech, OT, PT, vision), the dip-shit administrator, Pearlsky’s mom, and me.

Cutting to the chase, the therapists have two types of interactions scheduled … “direct service” and “consult.” “Direct service” is just that, one-on-one with Pearlsky. “Consult” is time with the teacher, and possibly time with both the teacher and Pearlsky. This year, every therapist wants to cut out all direct service and only do 30 minutes of consult, twice a month. To give you an idea, the physical therapist wants to go from two 45 minute direct service sessions and one 30 minute consult PER WEEK to one 30 minute consult every other week. Every therapist wanted to do this. Amazingly enough, Pearlsky’s mom went crazy against this.

They all claim that the teacher and aide have been trained well enough and they do PT throughout the day … and vision … and OT, etc. There is no need for direct service. I asked how this effects budgets, they said it does not. I asked if the teacher and aide know as much as the licensed PT or OT. They said “no, that’s why we will continue with the consults.” I asked if anyone stopped going to their GYN and only see the nurse¬†practitioner¬†who does all of the medical procedures. They looked at me like I had two heads.

Pass those brownies. We made it clear that we will not sign the IEP under those conditions.

Then the administrator asked the teacher what her main concern and goal with Pearlsky is. She said …

I think it is important to get her to stop putting her hands in her mouth.

This is the most important thing? Hold on, it gets worse. This became a FIFTEEN MINUTE discussion. Unbelievable. I said nothing, just listened. Maybe it is the pain meds or my mood, but I did not say anything. I did not want to jump all over the teacher (so to speak) in the meeting, she will be the teacher for four more years.

They went around saying how important it is to stop Pearlsky from putting her hands in her mouth. They agreed how they believe she can control this. I kept quiet. They say how they have tried to stop her, how they remove her hands from her mouth, how they try to make it hard for her to bend her elbows, etc. Fifteen minutes of this stuff. Let’s ignore the PT bailing on her, etc.

Today I sent this email to the teacher:

For many reasons I did not speak up yesterday during a certain part of the conversation. I want to share some thoughts with you.

There was a rather long discussion on Pearlsky’s “chewing” on her fingers, you were very vocal in your opinion and I greatly respect that. I just want to point out some things to think about …

1. It appeared that there was some agreement that Pearlsky can control this. I believe you and maybe [the vision therapist] mentioned that you can tell her to stop or distract her, or whatever, and that she can stop doing it, at least for a time.

2. If, in fact, Pearlsky has ANY control over this, if she can stop it at will, ever, then it is not purely reflexive, it has a voluntary component.

3. If, in fact, it has a voluntary component, then this is the singular action that we have seen that Pearlsky can repeatedly and wantingly (?) do.

4. For all we know, if she has any control over this, then it is either enjoyable, feels good, is comforting, or something else positive to her.

This may very well be the only part of her environment, her surroundings, even her body, that she can control, and this is an action she chooses to do. Potentially.

I agree that it is not always socially acceptable, but neither are many things that we all do, at least those in her “community.” Yes, it is not particularly pretty what it does to her index fingers, although I do not believe it is medically important (I understand the broken skin, etc.) most of the time.

I am just saying, if this is the only thing she controls, and she appears comforted doing it, is it really something to concentrate on taking away from her?

And, as a last thought, if she has any control over this, than have we not found a purposeful action that maybe we can leverage off of for some form of communication?

Just food for thought.

I’ll let you know what she says.

Pass the brownies, will ya?

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