Tuesday, September 18, 2012

How do you spell Stress? IEP.

I haven't blogged in a while. Nothing like stating the obvious, is there?

I have been in a sort of funk where Tessie is concerned. Nothing seems all that funny or blog worthy.

The biggest reason for my blah state has a lot to do with stress. Some days I feel like all I am is Tessie's personal secretary. The kid could really use one. I have spoken with Children's Hospital 3 times in the last two days, taken her to see her pediatrician, called in prescriptions to get refilled, gotten a new wheelchair in the works, finally gotten her weaned off the Keteogenic Diet after nearly 7 weeks of beating myself up over whether or not I was making a huge mistake in even doing it, talked to more doctor's receptionists, spoken with the awesome lady who makes sure Tess eats every month at New England Life Care, talked with our home health agency about Tessie's next medical review which is already due again to see if the State will see fit to continue to provide home health care for her, then of course there are the seizures that refuse to just go away, and last, but not least by any stretch, emailed the school about the upcoming school year for Tess....and subsequently called a lawyer.

Sigh.

I won't go into all the gory and depressing details since I am not sure even now where things stand with the school.  I do know they broke the law as far as providing Tess with what she was supposed to be receiving under the guidelines of her IEP (Individualized Education Plan as mandated by Federal Law) and when I tried to approach the school administration to help fix it, I was lied to about certain aspects of the law, given very questionable excuses as to why her IEP was out of compliance and basically told they had gone above and beyond what they were legally required to do for her.

Thank God I took a Special Education Law course a couple of years ago. I know my rights and I know Tessie's and I am here to tell you they picked the wrong girl to try to bully.

But even so, it is very depressing to be fighting with the school district that you grew up going to. To realize that the people in your own community elected to serve on the school board, whom, most, you have known your whole life, won't return a phone call or email so that you can tell them the reasons why you're upset even though the Superintendent had told me he had asked them not to.  Don't get me wrong, I understand that as soon as the word "lawyer" comes into play it is a whole different game and certainly would not expect anyone to say anything that could jeopardize the school's position, but I will admit, I thought they would at least want to know why it had reached such a level. That they would have enough empathy and quite frankly, sense of loyalty to another islander to at least call me and ask me what was going on?!

The silence from them was deafening. And saddening. After about two weeks I did get one quick response from a member who had enough compassion to let me know why they weren't talking with me.

So now, here we are. Tess hasn't been going to school since the first day when I sent her just to prove how they actually were not providing her even the most basic requirements, forget "above and beyond".  I cried like a baby when she went that morning because I knew they weren't ready for her but had to let her go so they could see it for themselves. She has since been receiving some home instruction from the school and the new elementary Special Ed teacher has been a god send.

I am not sure how things will unfold.  I am just hopeful for a good resolution. One in that we can all work together to do what is best for Tess. Without lawyers needing to be involved. Right now, I am not sure. It's pretty much all that is on my mind though.

Did I mention the stress? Yeah, this has been a nightmare.  And it is one of the only times I have ever felt like an outsider in my own town.

And that sucks.

6 comments:

  1. Joanna....so sorry you guys have to now go through this. It's not like you don't already have enough in your every day life to deal with. I can honestly say that I know that feeling of being an outsider in your own town. I had an issue with one my sons his Junior year and the school would never work with no matter how much I begged and it came to a point where I really just wanted to run away because I didn't feel I had a friend or anyone in my corner that understood....I seriously considered leaving and never coming back! It was a very stressful and lonely time and somehow I developed a couple of friendships and having a wonderful husband helped pull us through. I hope that the support of friends and family will do the same for you guys through this very stressful situation. And please feel free to call and talk/vent anytime cause although I can't imagine how you deal with what you do every day, I do know what it's like to fight for a child I love with my life and was willing to piss whoever off it took to make things right! Now that I think of it, not sure that really ever happened but guess over time it just became less and less painful! Good luck, Denise

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  2. So sorry, Joanna. I hope that a resolution is reached soon to take this added burden off your plate. You are a smart, funny, feisty, amazing women and mother - just keep that in your back pocket and keep fighting for your girls! XO

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  3. You are an amazingly strong person. I am sure everything will work out just fine. Just remember to take a deep breath once in a while.

    ((((((MENTAL HUGS!!)))))

    Valerie

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  4. Earlier this year an item on the agenda of a Selectmen's meeting was whether to join North Haven and Isle a Haut in expressing concerns to Congress about the risks of oil tanker travel in Penobscot Bay. Before there was even any discussion the Chair said, "I move we let them take care of themselves." and everyone on the Board agreed. I was so distressed to learn that our community of islands could be so not a community at all that I didn't even open my mouth (not like me). I guess I need to pay more attention.

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  5. Joanna - I can feel the stress in this post. I am so sorry. It would be so nice if just every now and then, something could be EASY, don't you think? EVERYTHING always just seems to be so hard - and it's especially difficult when people who should be for you and Tessie and trying to make things better for her just aren't doing that. There's not a doubt in my mind you'll get to the bottom of this and get what Tessie needs. But I wish it could be easier.... Sending prayers and hugs your way.

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  6. I am a first time reader and love your blog. I can so relate to the stress, but really liked how you articulated the stress of fighting your own community. Nothing to offer but sympathy on the particular form of frustration that is. I too spell stress IEP!!!

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