Thursday, October 7, 2010

Curriculum night, the Dixie Classic fair, and some realizations

It's been a wild couple of weeks. You'd think life would slow down a little bit, wouldn't you? Well, apparently not. Tuesday night was Curriculum Night at Jaymes' school, and this year we actually managed to get there. The last couple years there always seemed to be time conflicts. The other issue is that I have never quite been sure which school "nights" are actually meant for the EC parents to come to. Like the whole PTA ice cream social thing... not something we would EVER try to bring Jaymes to- it would be a nightmare for all involved. For the curriculum part of Curriculum night, again, confusion. From my experience, it seems like the only part of the curriculum that is emphasized is the regular ed curriculum. After all, the EC classes aren't even separated by grade. If it was not written down, very few of us parents would know what grade level our kids are working at. In fact, I'm not entirely sure as it is! He is supposed to be repeating Kindergarten, but his teacher tells me that all the goals on his IEP from last year are Pre-K goals, and that by the end of the year he should be reading a few words, and know the names/values/functions of different pieces of money. Soooo... Was he doing Pre-K work in Kindergarten last year? Or is he doing first grade this year, despite being retained? I'm very confused, and every time I talk to his teacher, I just get more confused. I sort of feel like I'm being blown off when I'm asking questions and voicing concerns, and in general when we're talking I feel like we're carrying on two entirely separate conversations at once. I hope this improves.

Anyway, Curriculum Night went ok. We had the teacher to ourselves mostly, I guess not many others decided to come. I wonder if they were also unsure of whether this was an EC friendly event. We almost did not go for this reason. I had really hoped to be able to meet and talk briefly to the regular ed kindergarten teacher, but it didn't happen. She is a sub for the teacher Jaymes went with last year for his regular kindergarten time, and I really doubt she has a clue. I am eager for Mrs. McGee to come back, she really got on board with us by the end of last year. She's a fantastic teacher, and Jaymes really seemed to like her.

Wednesday was fair day. Every year the Dixie Classic Fair does a "special needs" day, where the kids get free admission. Cash goes every year, and we've always gone along with the class. It is always a lot of fun. The last two years, Jaymes vomited at the lunch table, and I am very happy to say that he managed to keep the contents of his stomach IN his stomach this time. Thank god! The worst he did was chew up fries and spit them on the ground. That, I can live with!

Jaymes loved looking at everything, and he was especially amused by the magician guy who put the entire upper half of his body inside a giant balloon. Even better, the balloon was green, Jaymes' favorite color. He also enjoyed the petting zoo. There was a VERY amusing moment where the camel was licking Jaymes' teacher's head, while the classroom assistant made her hold still for a Kodak Moment. There was much camera difficulty, but I think they got some great photos. It was a great day.

Ok, having caught up on the thrilling happenings this week, I'll get to the realizations part of this post. I'm not really sure how it came up, but Jason and I were talking, and Jaymes was flailing and squealing on the couch, and we started talking about his educational future. I have always been very firm in my belief that Jaymes, if given enough opportunity in Elementary school, will not have to attend the "special" schools like Lowrance Middle and Carter Vocational High school. I still feel this way... But I am starting to doubt things now. Jaymes has lost so much of his speech, and his behavioral issues are getting worse and worse. Even the school is complaining about behavior stuff, and that has NEVER happened before. It's hard to take him anywhere anymore, and I guess I'm starting to question whether I am being realistic or not. Will Jaymes ever get any better than he is now? I mean, at almost seven years old, but only 40 pounds, it's easy to say "oh, he's fine." But if I think about a 13, 14, 15 year old boy doing the same things... well, it's not so fine. I'm perpetually covered in bruises now- what is going to happen if he is still punching, biting, slapping, and kicking when he's bigger than I am? What will happen when we take him to the grocery store? He'll be too big for the shopping cart, too big to wrestle cans and boxes out of his arms, too loud to ignore.

I know that thinking this way isn't in any way helpful, but really, I don't have it in me to be endlessly positive. I'm not having a great month though, so maybe all this doom and gloom is related to that. My meds are making me feel sleepy and sick a lot of the time, and when I feel sleepy, I get cranky. Add to that too many specialist appointments, too many therapy appointments, too many school stuff (his and mine) and it's like this never ending to-do list of insanity. I'm ready for my vacation, now!

Back to the point... I'm really questioning why I have spent so much time learning about the laws, learning what rights I have as a parent, and fighting like hell for everything Jaymes gets at school. It really blows my mind to think that maybe it's all been for nothing, and that no matter how hard I try to force the school to let him just be one of the other kids, it's not going to change the reality of things. Advocating for Jaymes has always been such a huge thing for me, and it gave me this feeling of having some kind of control about some aspect of life. I can't control anything about Jaymes' autism. I can't control whether the doctors take seriously any of his medical issues. I can't even control Jaymes diet (the lactose free) because he won't eat my packed lunches, but no one at the school has any clue which meals offered there are lactose free. And apparently, nobody has any way to find out. Now, McDonalds keeps nutrition facts that include ingredients for all their menu items. If the most unhealthy thing on earth does this, how is it the school system does not? What about kids with serious allergies? Why does no one have a clue? So yes, I have no control over anything, and it is making me crazy. I can't even control my own medications! If I don't take the meds, I spend all day having anxiety attacks. If I take the meds, one trip to the store knocks me flat and I need a nap. I can't lose weight, because I am so tired. I can't exercise much at all anyway, because my back and hip and leg hurt like crazy with any real activity. I was doing ok riding, as long as I took my Flexiril before and after the ride. But now I'm out, and apparently the doctor denied my refill request. So my only options are to sit around and not hurt too badly, or ride/walk/exercise and lose weight, but be stuck on the couch in agony after whatever exercise I have. And really, I understand denying Vicodin refills, obviously, but why deny something that helps me be active with pain? It's not in any way "high" inducing. In fact, it makes my stomach feel like it's full of goats. But, I sure do like being able to dismount after a trail ride, and be able to walk.

As I'm sure has become apparent by now, I'm very tired and very irritable and very rambly. I forget what my point was. But I'm sure it was a very important one. Something like that, anyway! I guess I'll finish this post another day!

1 comment:

Casdok said...

Yes all this battling and for why? Im feeling the same thing at the moment too.