Friday, April 6, 2012

Holy ____ Week, or Elections, Cars, and IEPs, Oh, My!

Palm Sunday is my favorite weird holiday. On Monday, BB was working on his math. He read me a problem that began, "Peter gives his parents 1/6 of his monthly income..."

"Aww," I interrupted, "What a good son!"

He burst into tears. I assured him that he did not have to give me 1/6 of his income to be a good son. He regained his composure and continued. When he calculated that Peter gave his parents $400 a month, he began crying again. I assured him that if Peter was making $2400 a month, he was much older than 13, and  that I would rather have a son who did good work than one who gave me a lot of money. Then I began inquiring about his health.

GL will actively deny pain when you ask him. Even post-surgery, he insisted he had no pain. BB will not deny pain if you ask him, but he won't report it unless you ask. He'll just get upset over every little thing, usually taking it out on everyone around him. Turns out he had a sore throat, headache, body aches, chills and, later that day, a fever. Since it was PT night at CAP, he decided he'd rather stay home. I went because I had a class to teach.

Tuesday was the presidential primary, along with several local races. I usually vote absentee because, between being GL's primary caregiver and school liaison, home schooling BB, and not having a car during the day, it's difficult for me to get to the polls. Because of the new voter ID law, I got a very confusing letter last fall saying that I would have to fill out a new voter registration form and provide a photocopy of a valid ID every calendar year, or they would stop sending me an absentee ballot. Since the next election wasn't until this calendar year, and my driver's license was due to expire in December, I figured I'd have to wait until after the first of the year to send in the form. In January, I got a second letter that was even more confusing. Things had been rather hectic here, so I still hadn't filled out the form in March, when I got a ballot in the mail. The instructions had changed. As usual, the village clerk had highlighted the parts I needed to fill out. But she had Xed out other parts, presumably those I didn't need to fill out, while still others were Xed out in highlighter! Whisky Tango Foxtrot? And the instructions about who was or was not required to present a photo ID were even more ambiguous.

I had taken the time Sunday afternoon to read up on the various candidates, so as to cast an informed vote. That's the other reason I prefer to vote absentee. I get a list of all the races and candidates several weeks before the election, so I have time to gather information and make a decision on each. Especially in local races, if there hasn't been much news coverage, how is the average voter to decide? By who has the most yard signs? By who has the nicest-sounding name? Some people like to vote straight party, but most local races are (officially, anyway) non-partisan.

I could mail my ballot Monday, and it should still get there in time to be counted, assuming I had interpreted all the instructions correctly. Instead, after dropping GL at school, first I stopped at the library and made photocopy of my driver's license, in case I needed one. Then I sealed my ballot in the provided envelope, and carefully filled in the blanks on the outside. I've heard stories of election workers opening a ballot, noting who the person voted for, and then looking for reasons to disqualify the ballot if the person voted the "wrong" way. I walked to the village hall with my ballot. I stopped at the voter registration table and explained my situation. The election worker was only too glad to assist me. I filled in the blanks she told me. I'm glad I had already sealed my ballot. I have an acquaintance who is an election worker in this town, and she says all of the other election workers are of the other party.

No ID was required. Two separate judges, on March 6 and March 12, 2012, have issued injunctions preventing the Government Accountability Board from enforcing photo ID requirements in 2011 Act 23. The Wisconsin Department of Justice has appealed those injunctions, and the appeals have been certified to the Wisconsin Supreme Court.

Wednesday, I looked at cars. We've been driving our car, a 1998 Crown Victoria since 2001. It had 97,000 miles on it when we got it, and now it has 308,000. The floor has completely rusted through in places. In the rear passenger side, there is no floor, only a vinyl mat between you and the road. We replaced the transmission at 200,000 miles. It had been getting about 20 miles per gallon when we bought it but, despite regular maintenance, it has gradually fallen to about 15. At today's gas prices, that's a real strain on the budget. We spend more each month on gas than on any other expense except rent.

It wobbles and vibrates when it goes down the road, and if the road slopes to the left, the car leans left. If the road slopes to the right, the car leans right. Don't get me wrong, this car has been very good to us. It has been the most reliable car I've ever owned, and has cost very little in repairs for the years and miles we got out of it. We should have replaced it last year, but Mama Bear had lost her job, and I didn't have a job to lose. We got nearly another year out of it, but much more than that, and we'd be walking. With MB starting her CNA course in couple of weeks, I didn't feel safe with her spending so many hours on the road in it.

We managed to scrape together $3,000, but it was going to be difficult to find a good replacement for the cash we had on hand, and a car payment was out of the question. From everything I've read,  Cash for clunkers cost the government a great deal of money and made little or no measurable progress toward the program's ostensible goals. What it did accomplish was putting those of us who depend on used cars in older, less fuel-efficient, more dangerous, less reliable cars. If the goal was to force more of the poor to depend on the bus, it succeeded. The rural and small-town poor are out of luck. There is no bus service in our town. But I think Washington wants the poor confined to cities, where they are easier to control. Anything but more independence and mobility.

I'm no mechanic. I can change my own oil, but anything beyond that, and I'm quickly in over my head. At least I know not to attempt a repair when I might do more harm than good. Because of my lack of mechanical knowledge, I've bought some cars that turned out to be very good deals, and others that turned out to be very bad deals. A friend of MB's is dating a mechanic. He offered to come look at cars with me. This was a welcome development, but it meant working around his work schedule. I spent every available moment for the last several weeks searching online for cars to go look at. I found very few cars in Wisconsin in our price range that would be an improvement over what we were already driving. We would have to drive to Illinois. I printed out information on several cars, and MB called the dealers to find out which of them were available.

Jon and I went looking at cars Wednesday. We drove as far as Romeoville. We saw some strange things and some strange people. He pointed out some problems I would have missed, and steered me away from a minivan that looked good at first glance, but would have required at least $1,000, and possibly as much as $3,000 in repairs and, assuming no other problems developed, would still be a 2004 model with well over 100,000 miles on it.

I ended up buying a 2004 Ford Focus. It's not perfect, but it's mechanically sound, and the body is in good condition. Should be easier on gas, and it takes regular instead of premium. The dealer was on the south side of Chicago. Bad, Bad Leroy Brown kept playing in my head. After buying the car, we stopped at the Subway on the nearest corner for lunch. We had to order through bulletproof glass. I had to put my credit card on a carousel divided into sections with bulletproof glass, which rotated so the cashier could take my card and swipe it. Our sandwiches came through the carousel, too. A police officer came in and bought his lunch while we were there. We must have seen a half dozen police cars, a fire truck, and an ambulance go by while we were eating. Remember, I live in a town so small it doesn't even have its own police force. The sheriff's department provides deputies as needed.

I needed to put gas in my new car to get it home. We stopped at the nearest gas station, where we found we had to prepay at 2 p.m. Gas was $4.50 a gallon. That seemed to be the going price in Chicago. $4.19 was the cheapest we saw in Illinois. Instead of prices for regular and midgrade or regular and premium, most stations displayed two prices: in large numerals the price for regular with a car wash, and in much smaller numerals the price for regular without. Of course, the words "with carwash" are so small as to be nearly invisible.

I followed Jon, since he had a GPS. Just as we were pulling onto the freeway, my cell phone rang. I don't normally answer my cell when I'm driving, but I did this time because I thought it might be Jon with important information. It was GL's Specially Designed Phys Ed teacher. She couldn't be at his IEP meeting on Thursday, and wanted to know if this was a good time to go over her plans for his PE class next year. I said that this wasn't a good time, but anytime Friday would do. She said that would be fine. I forgot there was no school on Good Friday. I think we both did.

In all my copious free time, I'd been preparing for GL's IEP meeting. Wednesday night, after I got home, Mama Bear took the car for a spin and we went to Walmart for such essentials as seat covers to cover the holes left by the former owner's cigarettes. Then we went over what I planned to bring up at the meeting the next morning. The things I wanted to bring up:

  1. GL has a vocational goal: he wants to make sandwiches at Subway when he grows up. He talks about other things, too, but he keeps coming back to this one. Ambitious, but attainable. We want to work on connecting his school goals to his vocational goal. 
  2. He needs a full school day. I know we requested starting him with a partial day, but that was to help him adjust. He's as adjusted as he's going to get. He has a right to a FAPE; he shouldn't have to earn it. And without a full school day, I just don't see that happening. 
  3. He needs academics. This means SpEd English and SpEd Math. He hasn't been getting these.
  4. He's supposed to be getting PT. It's in his IEP. His insurance cut off private PT because the school is supposed to be providing it. With his limited schedule, AFAIK, he wasn't getting it.
  5. The same for OT.
  6. Despite what all the textbooks say, in his case, foreshadowing is BAD. He lives entirely in the future. He doesn't care what's happening now, he only cares what's next. Giving him too much time to anticipate an event only increases his anxiety, leading to behavior problems.
  7. As we said before, LCD screens are safe. When he had a 24 hour mobile EEG, we saturated him with videos on a CRT screen. Not only did they not detect any unusual activity, he did not have the behavior problems afterward that we'd seen in the past. (A half-hour video would trigger a week of violent behavior.) Now LCD screens are standard, and CRT screens are disappearing, but he's been exposed to CRT screens on several occasions since, with no ill aftereffects. (Not that the school had ever followed through on their promise to keep him away from CRT screens. There's a  CRT TV and DVD / VHS player in his classroom, and when I pick him up, he's watching it right along with everyone else.)
Wednesday morning before the meeting, I took a few minutes to write a short letter thanking the staff and students for all the'd done to make GL's transition to PS such a positive experience. On the way to school, as usual, GL asked about his schedule. I told him he had a choice. He could go to his IEP meeting, or he could go to his regular class. He has a right to participate in his IEP meeting, but I didn't know if he would want to. He decided to attend the meeting.

We got to the room, everyone found a seat, and his teacher asked everyone to introduce themselves. Introducing himself is one thing that GL is very good at. The only person at the meeting I hadn't met before was the new school nurse, who had only started working there the week before, but it was helpful to be reminded of everyone's job titles because, although I see most of them frequently around the school building, it's hard to remember sometimes exactly who does what.

Then we went around the table and each person reported on GL's progress in their specialty, followed by recommendations for next year. I was able to ask each of them questions and give input when I had any. His OT reported that he had, in fact, been getting OT services once a week for some time, and had reached all the OT goals in his IEP. She will continue to evaluate him once a quarter to determine if he needs any further services. His PT reported the same thing. I don't know when this started. Communication has never been this school's strong suit.

His PT also had a report from his SDPE teacher. I knew he was getting PE, because he comes in first period two days a week for it. The rest of the week, he doesn't come until second period. She listed his accomplishments this year, and goals for next year. Every time someone mentioned one of his accomplishments, GL thought he was in trouble. I kept reassuring him he had done well and giving high fives.

The nurse had a question about his meds, which had changed mid-year. I promised to get her a current list.

The SLT said his speech was fine and his language skills were far beyond his cognitive development, which is true. In fact, that was what what she had reported after testing him for his current IEP. He'd had a monthly SLT consultation this year, and she recommended they drop SLT entirely for next year. I agreed.

His teacher reported on his progress this year, particularly on behavioral issues, in which she highly praised him for his progress and recommended a full school day, including SpED English, SpEd Math, Vocational skills, living skills, community participation skills, and field trips. He begins full days, five days a week when he returns from Spring Break a week from Monday. His guidance counselor asked a couple of questions about his schedule and made some notes. Then it was my turn.

I explained his vocational goal, and they all thought it was a good one, and were enthused about connecting it with the goals already in his IEP. I explained about CRT screens. Not that it changes anything, but they were glad to know it wasn't a problem. I decided not to beat my head against the foreshadowing wall. It's something professionals just don't get because it goes against their programming. They seem to be learning to work with him quite well, even if they do insist on learning by trial and error. Then I read my thank-you to them:
We would like to thank the staff and students of _____ High School for making [GL]’s Freshman year such a positive experience. The high school years can be a difficult time for anyone. Add his special needs and the fact that he was transitioning from home school to public school, and you can understand our concerns.

Everyone, both students and staff, have gone out of their way to be friendly, helpful, and kind, not only in Special Ed, but throughout the school. [GL] can’t walk down the hall or even down Main Street without meeting one or more students who greet him by name and take an interest in what he is doing. He loves school, and is disappointed when he has a vacation, a day off, or even a two hour delay. 

It hasn’t always been easy. He had a difficult time when his meeds weren’t working properly, but that’s life with [GL].

We look forward to working with the staff and students to make the rest of his high school years equally pleasant and productive, giving him the best possible preparation for his life after high school.

Again, Thank you all,

[Mama and Papa Bear]
 Everyone was pleased and moved by my letter. His teacher even cried. She said that the number of student helpers allowed to work in the SpEd classroom had been cut back, and she was working to restore it to the previous level, and this showed the effect the program had on the entire student body. Other staff members asked for copies to share.

After the meeting, I took GL to join his classmates for the rest of the day. One of the aides mentioned that there had been a schedule change. Spring Break was to begin Good Friday, but had been moved up to beginning with an 11:30 dismissal Thursday. There was supposed to be a phone call or email to all the parents, but I never got one. Lack of communication strikes again!

I went to the pharmacy and the grocery store to pick up a few things. and returned for GL at 11:30. As usual, we stopped at the library on the way home. That's when I realized that the hectic week I'd just had would be followed by Spring Break, the bane of autism parents everywhere. I planned to come home and blog about the past week. When I got home, I sat down and fell asleep for an hour. When I awoke, I was in such a fog I couldn't write or even think of the next thing to do. The fog continued the entire afternoon and evening. I went to bed early. This morning I got up and made a list of all the things I needed to do. At the end of the day, this post is my biggest accomplishment. My plans for this weekend are to rest! And that's the news from Lake Wobegon, where all the women are strong, all the men are good-looking, and all the children are above average.

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Blogger DeeAnn said...

Wow!! That was A LOT of information in one post. ;)

Two things that GL does jumped out at me because Cody does the same things. #1 He denies pain...even before and after surgery and #2 He cares more about what will happen next instead of 'the now'. With Cody, we basically live from holiday to holiday and/or event to event.

It's so good to know there are families in this world who deal with the same bazaar (for lack of a better word) things as we do.

April 10, 2012 at 4:39 PM  

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