Thursday, September 17, 2009

With all this spare time, it's a miracle we're all still alive!

Oh yes, TONS of spare time. Because you know, going to a zillion doctors and therapists each week wasn't enough... No, I had to add school into the mix. I am SO tired! On the plus side, I've had fours tests and a bunch of English papers- thus far my lowest grade has been a 93. Hooray for success.

We had Jaymes' IEP meeting last Friday, that was kind of draining too. I was super lucky in having a really wonderful lady from the ECAC there to help me out, as well as Jaymes awesome case manager, Julie. We decided it would be best to tape the meeting, a request that was met with a decent amount of barely suppressed hostility from the school's end. I can understand it being an annoyance, but really, it protects all of us to have the whole meeting right there and able to be reviewed should the need arise.

It was a very full, very small, very hot room! The meeting included myself, Doreen from ECAC, Julie, the principal at the school, the school speech and occupational therapists, Dr. Evans-Everette (one of the higher-ups in the district), a regular ed teacher, Jaymes' teacher, someone from transportation, and the school's case manager. Out of all these people, only I, Julie, and the school case manager had actually been at one of Jaymes' IEP meetings, so it was a lot of repetition to play catch up.

First topic at hand was the bus situation, obviously. Jaymes had had his bus stop changed from a very quiet side-road to a very busy main road, and I had not felt safe putting him on at the stop because Jaymes is... well, he's Jaymes. I'd filed an appeal which had been immediately denied, so we had needed to invite a transportation person to the meeting to deal with it. There was much argument, including a lot of "It's the parent's job to make sure the kid is safe while waiting for the bus" which was really kind of insulting. I think sometimes these folks forget that while I'm a stay at home mom, I'm not a moron and I do indeed have a brain. In the end, we pulled up a picture of the area on Google and the actual view helped very much. The bus was changed immediately, and we are thrilled to have the same driver as last year. They did also manage to get a harness that sort of fits on his bus, which is great. It's one less thing to deal with, figuring out how to get him to school was exhausting for both myself and Jason.

The next issue was Jaymes' Vantage Lite. Apparently the fact that I had to go to an outside-school office to get the darn thing and go through months of paperwork and waiting doesn't mean a whole lot- does not sound like he'll be allowed to use it at school. Instead, the school plans to find a different device to use with Jaymes while at school. This is the stupidest thing I have ever heard. I provided the device, and saved them thousands of dollars on it. I went to the effort of getting a much better evaluation than the school would have provided, which apparently means... Not much. They've decided that all the devices are the same or similar, so they can just use something else. I think it's ridiculously unfair to expect Jaymes to use two different devices just to save the school some effort, and am thoroughly disgusted with the outcome on that one. The school seems to have forgotten that the point of a device is for Jaymes to be able to communicate in whatever way works best for HIM. It's not our job to save them work and money, that's their own job. They appear to have quite a talent for saving money at the expense of their students anyway, from what other parents have told me. Yeah, I'm very unhappy about that part of the meeting, and I am bitter about it. That fight isn't over with yet.

Next order of business was finding a way to get Jaymes out of the self contained bubble of a classroom he is currently in. His teacher seemed very resistant to the idea of including Jaymes in any of the regular-ed kindergarten stuff, but in the end we all agreed that he could go out every morning for circle time with the regular Kindergarten class, as well as to PE. It's not much, but it is a start and I'm glad he'll be getting out at least for that 30 minutes a day. That's something.

In general, the meeting was a lot of rehashing old points about the speech device and fighting over Jaymes' placement. I don't like the way Jaymes is talked about at these meetings. The wording is incredibly offensive. Calling it the AU class is insulting. Treating my kid like he's brainless is insulting. The end of the meeting was a little uncomfortable, as school had ended and everyone wanted to leave. Sorry, but I didn't choose the time, and we weren't leaving until we'd finished. I felt bad keeping everyone late, but they were getting paid- I wasn't.

I can't complain 100% though. I think the school realized that I am serious about advocating for Jaymes, and I'm happy that they were willing to give inclusion a try. This is 2009, not the 1950's. We don't hide our disabled kids anymore. The schools will eventually get with the program in regards to that fact, but until then, we parents just have to keep pushing. I'm pleased that the team was able to look past their personal opinions and make a decision that will be in Jaymes' best interests. I think he'll do pretty well once he gets used to the swing of things.

This school year will be different than the last couple. I didn't keep good communication with the school last year, which is why I was as out of the loop as I've been. I'm slowly learning the laws and the rights I have as a parent, and I'm learning to be more assertive. It's still very uncomfortable for me, but it's a necessary skill so I'm ignoring my fear of confrontation and doing the best I can.

So, in short, the IEP meeting accomplished the following:

-Bus stop fixed
-Jaymes goes out to circle time every day with the regular-ed class
-Jaymes goes to PE with regular-ed every 7 days (it rotates)
-OT goals were updated, and have I mentioned how wonderful his school OT is? I love that woman!

We didn't get a lot done, but we got enough to keep me happy until his annual review in November. My goals until then include getting his teacher to actually tell me what's going on at school (his notebook home just has stickers that say "awesome!" etc, they don't say a word about his day), to get this silly aug comm thing set up with the school, and to help Jaymes succeed as best as he can. The longterm goal for him is to keep him on track to leave Elementary school headed for a regular-ed middle school. there will be no Lowrance middle for Jaymes, nor will there be a Carter Vocational Highschool. Jaymes has more in his future than the vocational track.

I can't complain that


Jasmine said...

Wow. The parent's responsibility to keep them safe at the bus stop? That's a bunch of bull. First of all, as a public school, it is their responsibility to make sure the kids get back and forth to school safely. I know when I was in school, if another child was misbehaving at the bus stop the school disciplined them. That would have just made me angry if they said that to me, and I don't think I could have been calm with them about that. Or anything else they've told you. Sounds like you have a lot of issues you need to deal out with them...

Adelaide Dupont said...

The IEP sounds good so far.

Especially good is that Jaymes gets in at the most social times of the regular education classroom.

And indeed it is insulting the way the class is talked about. Don't they realise that they are individuals with their own personalities and learning needs? Seems when you're bundled together in any large group, it really does deindiviualise people.

Good idea that you got the bus stop fixed, and the same driver, who knows Jaymes well.

As for the Vantage Lite and the other AAC device ... there is a disturbing pattern here. If they want Jaymes to communicate, then why doesn't he do it in the way that he's been accustomed to?

Amber DBTD said...

Jasmine: I can understand what the school means when they say that, because yes, it is my responsibility as a parent to make sure he is supervised and under control while he waits. But I think it's their responsibility to make sure Jaymes does not have to wait for the bus in a place that presents a hazard should i somehow fail and he get away. Accidents happen, ya know?

Adelaide: I enjoy your comments ( :

I agree with you that it seems like the individual gets lost when that individual is part of a ground, in this case a group with the same diagnosis. These 7 or 8 kids all have the autism DX, but they are 7 or 8 VERY different kids and I doubt one classroom can adequately address all their needs just right. It would be nice if they could look at each kid, and I know that's hard for them to do, they have limited resources. There's got to be some compromise I guess.

The AAC device.. I don't even know what to say about that. I was confused during that discussion at the meeting, I was confused when we left, and I'm confused now. I'll be making a post aobut that here shortly, in an effort to clear my mind!

Sara said...

About the device, have you contacted your states assistive technology program? They may be able to help advocate with you on that issue. I work with INDATA, the AT program in Indiana.