Another fight to the death

Oh, school. School has been one big rollercoaster for Julianna. Just when I think things are perfect, settled, working wonderfully, is when everything comes crashing down. I don't understand why it always ends up that way, but I am on the verge of tears right now, thinking about what I have to face in the next week to get things fixed.

When you have a child with special needs, you will most likely write up an IEP (Individualized Education Plan) with your school district. I have been to more IEPs than I care to admit over the many years Julianna has been in school. And the last year or so, they've been just fine. But then sometimes, you go to an IEP, and a big gigantic grenade is thrown your way, something you weren't even told was on the agenda, and something that can turn everything you've fought for upside down. This is the nature of the IEP meeting, and to be blunt, it SUCKS! Yes, I said it, and I usually never do, but it's true.

Today was supposed to be an easy IEP, where we would discuss Julianna getting OT (occupational therapy) again, and also being evaluated for APE (adaptive PE). This was the agenda, and I did not know anything about the third item until suddenly they were saying that the trial period for allowing Julianna to miss school for 90 minutes on Monday and Wednesday in order to do therapy at home from 2-5 was now over, and that if she missed school starting in November, she would now be marked as unexcused. What? This is what people do after a trial period? After we had just talked about how she was doing better than she's ever done in school, in large part due to her therapy. How she's getting 3's on her report card now. 3's!!! She's never gotten a 3! That means she's meeting basic requirements for her grade level!! This is almost unimaginable to me!! But yesterday, as I sat at her parent teacher conference with her great teacher and heard about how great she is doing socially AND academically, and I saw those 3's on the report card, I was overcome with gratitude. Finally, I had found a great system for her that included just enough school and therapy. It was working. We were seeing results!

So then to go to an IEP meeting the very next day and hear that all that would be taken away, EVEN THOUGH IT'S WORKING, is complete nonsense. We all sat there and agreed that this therapy, though she is missing some school for it, is helping her in school. But of course, they are bound by law, and have to make sure all students attend the full day, blah blah blah. So they made it seem like their hands were tied. I asked if she could get some of the ABA therapy at school, so she wouldn't have to be there, and they said that type of therapy is only offered to students who have problem behaviors at school, and then the school district contracts with ABA providers to get it arranged. I asked if we could just write into her IEP that the therapy at home was part of her education, and they said no. They gave me no options, other than to just do the three hours of therapy after school. But I told them there's no way I'm going to force my daughter to go to school for 6 1/2 hours and then do another 3 hours of therapy, and let that cut into our family time and dinner time. So we were stuck. And I was so flustered, that I didn't know what to do. I signed the IEP. I told them I would try to figure something out. And then I came home, and went, great, what did I just agree to? What JUST HAPPENED? I talked to Joel, and he said we need to fight this. We don't have to be flexible for them just because they want their money. And WHY DID I SIGN THAT IEP?

Since then I've been on the phone with just about everyone I can think of. Advocates, special ed reps, I even called back the person from the district who was at the meeting, and told her I wasn't prepared to discuss this topic, that I didn't even know she'd be there, and that I don't want to change anything. I told her I wished I hadn't signed the IEP. She seemed apologetic, and told me that she thought I knew that that was the purpose of the meeting. I told her no, sorry, I had no idea. So she said we do need to meet again to discuss it. I started getting emotional, telling her that she's never gotten a 3 on her report card before, and that's in large part because of how wonderful this therapy/school system is working. She said we would try to work it out. But honestly, I don't think they're going to suddenly feel like they can allow her to miss that 3 hours of school a week. It's going to be a fight, another long fight.

I just talked to an advocate who is a relative of one of my friends. I told her the situation, and she said that I need to write a letter, request another meeting, that this meeting wasn't valid because the person from the district was not listed on the notice of action for the IEP as attending, and that the best solution would be to force the district into contracting with the ABA agency we are using and allow Julianna to be pulled out of the classroom for therapy there. If they have to keep her the full amount of hours, then they have to be flexible, too. I like this idea, and I hope they will go for it.

So I'm just really tired now. I've been on the phone for the last two hours, and poor Nathan got put in his crib just so I could make these phone calls for my daughter. It's okay, he ended up falling asleep. This is my life sometimes, and there's not much I can do. I have to reach deep down and find that fighting spirit that I still have, and get this fixed. Wish me luck!