CSE Meetings and Silence of the Lambs

I went in alone. 

You gotta understand--I don't "do" horror movies. Why I sat through Silence of the Lambs an eon ago--at night, albeit with my brother--is beyond me. After the movie, I drove my brother to his house, went to the ATM (looking in every direction to make sure no one lurked,) and walked next door to the supermarket.

I knew it. A man followed my footsteps. My heart thumping, I peeked into the next aisle and tiptoed down it. Hannibal was there, somewhere. But I evaded him. I paid for my goods, went to my car, checking out the parking lot. I peeked under the vehicle and into the back seat and opened the door. No one hiding. I placed my two bags in the car, sat behind the wheel, locked the door, buckled up and drove home.

Heroines who walk into unlit apartments with arms full of bags get attacked. So I left the bags in the car, unlocked the outside door (it was an old house,) unlocked my apartment door and turned on every light--outside, hallway and kitchen. I kept my keys threaded between my fingers, the way I'd learned in college.

And then the fuse blew.

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 On Thursday, I walked into a CSE meeting alone.

I might as well have had bags in my arms. I might as well have been bound and blindfolded. I might as well have yelled, "Ready, aim, fire!"

As it was an early morning meeting, my husband was home with the children. I was solo.

My son now receives homebound tutoring services. I am not that impressed with his work, as much of it worksheets. He can spend an hour looking up and writing definitions of words when he has dysgraphia. As an elementary school teacher, I would like to see my child learn fractions with objects (manipulatives) rather than memorizing rules the way I once learned, without understanding a thing about it. PANDAS often results in a decrease of math abilities and my son was hit with that bomb. 

The tutor had advised my husband to request that my son get credit for this year (I didn't realize that he wouldn't!) and had advised him to ask about a certified tutor (I didn't realize that HE wasn't!) But during the CSE meeting, the tutor (on speakerphone) seemed to think that my son doesn't put enough effort into his work because right after his lessons, he leaves (to sleep for the afternoon--he's used up his energy.) And frequently, he has not been able to tcomplete homework. 

Interesting that after the IVIG, he can work. Ain't that interesting? Doesn't that tell ya somethin'?

In the course of the CSE meeting, it became apparent that the tutor had never picked up any of the science work (experiments!) left by the science teacher. Three months of work! And my son would love anything that is hands-on. It's a shame that he cannot learn directly from this science teacher, but it turns out he wasn't even learning indirectly because of a lack of communication on the school's end.

We never even got to discuss his IEP. The director of special education had her own agenda. She wants to speak with our PANDAS doctor, the one who wrote the note that is keeping our son out of school. She was not going to give any services away. This meeting was all about communicating with the doctor and bringing my son back to school.

She wants my son to attend school for a short period of time every day. Does she believe that we WANT our son to be home all day long? I attempted to explain that when my son is exposed to ANY germs, he flares. So, he might attend one day and then be out for two weeks, as he was before he received the homebound tutoring.

Oh, no. She wouldn't listen. Every word I said was conradicted. Clearly, she was pissed as all get out that I wouldn't give permission to speak with our doctors. It's not legally necessary. I've given them papers about PANDAS. What more is there to understand?

So back to my son returning to school. I asked if the school would guarantee that everyone in the class would be healthy. (Of course not.) As my husband later queried (to me,) is the school system willing to cover the thousands upon thousands of dollars that have been spent on doctors, medications and IVIGs?

It became apparent that the group feels my son is not doing enough work. It became apparent that anything I said mattered nought. It became apparent that they are not going to assist him anymore than they are already doing. 

As a teacher in the public school system, I know that a director of special education is often a gatekeeper to services, with the main interest being the protection of the school system's pocket book. So the school system will never suggest alternate, available services if it means opening up their own wallet. Doesn't look like we'll get a teacher with a degree in special education to work with my son at this time. It was finally decided that they would ask the math teacher for the manipulatives (but does his tutor know how to use them?)

For some reason, the director had to argue with everything I said. I realized at some point that she was making this almost personal. And that's when I shut up and started taking notes.

When I said my son used to have many friends, but had a rough time in school last year, and his friends began slipping away, she contradicted me. She said that he was very social and that was the one strength he still had. Has she even met my child? Does she live in our house? Has she monitored our phone? 

When I finally said that I could not give permission to speak with our doctor until I had conferred with my husband, the director said she'd call me that night for our decision. I told her that I wouldn't have a moment to speak with him about this with him in one day.  She stood up and said, "My daughter's 16th birthday is today but I can make the time to call you tonight. I think you can find the time for this discussion."

Speechless. I was aghast. The smug arrogance from her swept over me. The nastiness shocked me. All I could think was that she was fortunate that her daughter doesn't have PANDAS and that her household is not fraught with the nightly triggers as is mine. That when she comes home from work, it's not about literally holding a raging child and soothing his sibling, or trying to bring down the stress level in the house. She went so far over the line. 

She earned herself a lot of nicknames on Thursday.

And this thing ain't over. 

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For the record, the night the lights went out after the horror film, I climbed the dark staircase to the upstairs apartment and rapped on the door. (Note: this was before cell phones.) College students from Haiti were living there and one of the young men accompanied me to the basement so that we could fix the fuse.

A week later, he laughingly told me he'd finally seen Silence of the Lambs and understood why I couldnt walk into the basement alone.  

Should've had him there with me on Thursday.