I brought a gun to a knife fight

Divine inspiration made me take out the good clothes last night. The Yves Saint Laurent blue shirt, the non-jeans slacks, etc. You know, my “Sunday best” (well, the clothes saved for IEPs and funerals). In a vision, Aphrodite told me to pluck my brows and trim my beard … all set for O.K. Corral IEP.

We must remember that at last year’s IEP, the therapists all wanted to cut down, or cut out, their “direct services” and just do a bit of consult. The asinine theory was that the teacher and aide would be doing PT and OT and things during activities throughout the day. You can imagine how that IEP meeting went, and yes, that IEP was rejected. I expected much the same this year.

I stroll into the office for the meeting and am greeted by the new Special Ed Coordinator. She smiles and tells me that the Head Nurse asked this morning if she should attend. Mind you, I was ready for her to show up, and had practiced my “Because of two investigations into your neglect and abandonment of my daughter, let alone multiple violations of her civil rights, I think you not only have a conflict of interest, but only have the worst of intentions for Pearlsky. Either you are off the team, or we come back to the rescheduled meeting with legal counsel.” At that point I would have left. But nooooo, Ms. I’m-The-Special-Ed-Coordinator went and said to her “No, if you were needed at the meeting, you would have been invited.” Damn, a good speech not given.

The meeting starts with the OT, PT, SLP (speech language), both teachers (puppy dog and the long time teacher), the coordinator, Pearlsky’s mom and me. I am asked what our overall concerns are, and I read this …

This past year has been horrendous for Pearlsky. There have been repeated gross violations of her IEP, her civil rights and her Section 504 rights.

Her IEP was actively violated in multiple ways. There is an on going investigation by the States’ Office of Public Protection. The State Attorney General’s Chief of Civil Rights has contacted the superintendent and the city lawyers a half dozen times on Pearlsky’s behalf. Pearlsky and I have been embarrassed by staff in front of staff and other students inexplicably.

Pearlsky is here for basically two things, socialization and therapies. Both failed during the last IEP and we cannot let that happen again.

There can be no more separating her and treating her as pariah or unworthy.

The complete and total lack of empathy on all levels is mind boggling.

Those are the concerns.

Everyone listened, no one commented. Then we moved on. PT agreed that we should continue at the level we are (I agree). She even asked what she can do, PT-wise, that may make the home life easier! The OT is new, but she had great ideas but not enough time. OT has been scheduled for one thirty minute session a week. I produced a prescription from Pearlsky’s physiatrist that said OT should be two forty-five minute sessions a week. Ms. I-Am-The-Coordinator-And-Goddess took the prescription and crossed out the “1 x 30” and wrote “2 x 45.” The SLP spoke a bit, and the long term teacher had her say. Nothing of note. Oh, and Mr. Puppydog teacher from yesterday’s post, I don’t think he said a single word.

The PT, yes, the one that was the cause of Pearlsky’s PT getting canceled for months before the summer last year, the one that I have (not too intentionally) reduced to tears in the past, the one who has a permanent sour look on her face, actually was not only nice, and a team member, she even gave me some good natured shit, which I accepted with a smile!

We did discuss the fingers-in-her-mouth thing. The teacher is adamant about it being a bad thing they need to stop. She thinks it is anti-social, and, not in so many words, she thinks it is disgusting. The OT and Ms. Coordinator were completely on board with my insistence that their be NO physical methods to try to stop it. We shall see.

We did not even mention nursing, no reason to. Pearlsky did not lose any current services, she actually gained. I didn’t even get to really advocate for Pearlsky, I failed her. Well, there was no reason to.

I have learned over the 18 years I’ve been doing this, there are a couple of necessary things to be taken seriously. One is, if you are going to go crazy, you have to be right. Another is, you cannot always be negative. I have involved the Superintendent of Schools when necessary (in my view), and the last couple of times that contact was via the Chief of Civil Rights attorney for the state. In light of the don’t-always-be-negative-to-be-taken-seriously, this very deserved email was sent earlier this evening (MDS is Ms. I-Run-Sped-Now) …

Superintendent:

As you are well aware, I can be a voracious advocate for my severely disabled daughter. I have tried to only contact you more as a matter of last resort, I do understand the importance of the chain of command. But, alas, there are times when jumping to the top is necessary, either with gross negative incidents (as evidenced last summer), or in the current matter where I need to share a wonderful situation and feel that you should be apprised.

I believe today was the 26th IEP I have attended for one or the other of my severely disabled children. As you may or may not be aware, IEP meetings are extremely difficult on parents. They often feel contentious and adversarial; unfortunately this is a universal feeling. There are books, websites, and an entire industry devoted towards helping parents deal with just the meeting, let alone the process. This has been true in your district as well. At Pearlsky’s IEP last year, we (her parents) were blindsided by the determination of the High School staff to eliminate 90% of Pearlsky’s direct services and have only a small amount of consulting services. This was outrageous by many standards, and that determination (i.e., “outrageous”) is not only mine, it is backed up by the actions of the Assistant Superintendent and MDS in reversing the suggestions. My point is that the meeting was what IEP meetings are known to be, horrendous, from a parental point of view.

Today was different.

The structure and scope of the meeting was much more appropriate. It was led in a forthright manner and kept under the proper level of control, a difficult thing for such an emotional gathering. But much more important was the attitude of the staff and all the members of the IEP team. To put it bluntly, what has always been missing is empathy. No therapeutic team member ever looked at the world or the environment from Pearlsky’s point of view, nor for that matter, from her parent’s point of view. Their only concern has been scheduling and budgets which are vitally important, but as opposed to manufacturing a widget or something, this involves the actual life, health, and physical well-being of a child or young adult.

The team has changed and attitudes have changed. The only variable in the mix is MDS.

MDS ran the meeting as such a meeting should be run. She has obviously worked with the staff in preparing for the meeting, in how to interact with parents, and has brought not only a new level of professionalism to the team / school, but possibly an attitude shift which, in the long run, will benefit everyone. Working with her team, she not only presented an IEP that Pearlsky’s mom and I feel is fully appropriate, they were also open to new issues or revisions on the spot.

We still may not get everything we want for Pearlsky, but that is not the point. The point is that there finally is a team in all senses of the word and that is to the credit of its leader. A team of staff, faculty, administration and parents working for the same goal, thanks to MDS.

MDS recently joked to me “Not to worry, there’s a new sheriff in town.” I have not seen the gun she carries, but her words, attitude, and skills speak for themselves.

Hence, the IEP was boring and a let down. No bloodshed. Not even a single kick in the shins with those stiletto boots. Damn.