Saturday, September 20, 2008

Where have I been?

I've been a bit stressed. I don't handle it very well.
I tend to let other things totally slide, even things I LIKE doing.
I can't focus on other things when the object of my stress is my child.

Seems the school did it again. We hammered out an IEP last year, two sessions, the last one was two hours long held on the second to last day of school. They agreed to offer supports in line with MD recommendations.

I had a meeting ten days into the new school year and gee, what do you know, my child is falling: emotionally, confidence-wise and academically. Ten days and all present at the meeting noticed but didn't know what to do about it.

HELLO!!! Look at the bloody IEP! They didn't initiate ANY of the accommodations! They said 'sorry'. Sorry is NOT good enough! There were two supports they were to have set in place from day one. It took 2 1/2 weeks to do one and the other didn't even have a plan to do so yet! Yet THEIR MD said they were crucial to my son.

My advocate had steam coming out of her ears. Middle school is tough. Going into middle school with a new building, new rules, new responsibilities and,after two years in an isolated program which was finally deemed inappropriate (duh), going mainstream again is daunting. And they let him flounder. I give him credit. He didn't breakdown in school. He was holding on by his fingertips. But we sure understood something was happening...or not.

The other thing we had to fight, but ended up being anti-climactic, was their initial refusal to list Aspergers as a diagnosed condition. Because THEIR MD didn't see it in his opinion after six hours of testing, they disregarded the six week hospital program where he was there Monday through Friday for the duration. It's part of his med file. How can they say he isn't on the Autism Spectrum?

It was anti-climactic because they didn't argue at the meeting and it was quickly overshadowed by the other issues that came to light.

WHY is it so hard to do the right thing for my child? Why is it a fight? Why doesn't No Child Left Behind have any meaning?

I'm having MUCH better luck for my other child with his peanut allergy. I joined a group of mothers two years ago who are extremely proactive in protecting their children in the school as far as peanut exposure. Some mothers had not had any children in the system yet but because of what us already in the system experienced, they knew what they wanted and didn't want for their children once in the school system. It's amazing what a vocal group and letters and being PRESENT for meetings can accomplish.

The latest wrinkle is the bus. We were all set until I and the other mothers got a call from the superintendent of the school system two days before school started.

Seems the lawyers for the bus company got wind of their drivers being Epi-pen trained and felt a suit was imminent. They absolutely forbade ANY and ALL drivers from administering Epi-pens in an anaphalactic emergency. Even if the driver wanted to, if the driver saw that the child was in such distress and they could see the EMT's could not get there in time, they are NOT to intervene.
WTF?

The Good Samaritan Law protects people from suit when they try to assist a person in a life threatening situation. It's not just for heroes who give life saving CPR. (ribs can be broken in that process) But that doesn't matter. No is No.

I went to a 504 meeting yesterday and was pleasantly surprised. The school system is actively seeking job applicants for the role of ... gee, what would their title be? Any bus that has a child riding in it with a LTA (Life Threatening Allergy) will have a trained person with knowledge of response protocol and Epi-pen usage and will ride the bus while these children are on it. My child has an Epi-pen on him at all times in his backpack in a designated pouch.

I was pleased and relieved with this alternative. In a few years it will be a non-issue when he can self-administer. But right now? He needs to rely on adults.

So, the school system is quite a see-saw. For one child, they are not doing their best and for the other, they are.

I think parenting these days is much tougher than my parents had it -- environment wise. We have more options but we also have more things to fight for and against.

I've been reading during this situation, but I have latched onto books as an escape. I don't want to do anything right now expect read. I want to read about HEA's and good triumphing over evil because in my own life, there isn't an HEA in sight, neither is evil clear cut...it exists in a shade of gray and it goes by the name of "the bottom line". It rules people who should care about the child but are tied to monetary shackles instead. The sad thing is...they don't seem to mind.

Does it matter that I do?

4 comments:

Brandy said...

It will always matter. You are a mother, one who fights to do right by her children. And is fighting when one son is floundering so badly because of a system that isn't prepared and doesn't seem to want to be. I wish I knew how to help. Please know that I am here if you need to talk and I support you.

Michele said...

Thanks, Brandy.
I will. I know I've been a bit of a ghost lately.
Sorry about that, but your comment made me feel good.
Thanks for that!
HUGS

Daisy Dexter Dobbs said...

Aw, Michele, I'm so sorry you have to through all of this. There's nothing worse in this world than having others interfere with what you know is best for your children.

I sincerely hope all will be better soon. It's very evident that you're a loving and caring mom. :-)

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