Go ahead...

As you know, GL loves movies. He loves quoting movies. He'll frequently tell us about this or that movie that's "Coming too soon on video and DDD!" He especially loves Disney/Pixar movies.  His all-time favorite movie is Monsters, Inc. And his favorite part of any DVD is the bonus features.  When I drop him off at school, after we successfully navigate a busy parking lot filled with teen drivers and are nearly to the door, if there's nothing coming, I let him cross the last lane by himself. The last few mornings, as he walks away, I say, "Go ahead… Go throw up!" It makes him smile every time.

Tardy

GL's school personnel may not be good at communicating with each other, much less with parents, but they try. For one thing, whenever a student is absent or tardy, the attendance office sends his or her parents an email. Otherwise, I would never have known anything happened yesterday. I'm still not sure what happened.

Usually I can ignore these emails. Occasionally they reveal some quirk of school policy. (Did you know that if the entire class takes an all-day educational field trip on the school bus with the teacher and all the classroom aides, it counts as an excused absence?) If he was sick or had to come late or leave early for a doctor's appointment or something, I already know about it because I called him in. I suppose if a kid decided to cut class or ditch school entirely after leaving for school or being dropped off at school, or just didn't bother going after his or her parents left for work, this would alert the parents. But GL is in the same classroom all day, and has staff walk him to and from lunch, so it would be hard for him to cut class or be tardy even if he wanted to. He can't cross the street by himself, so even if he left the building, there isn't much of any place he could go. And he loves school. He is disappointed or even angry when he has a day off. So imagine my surprise when I got an email last night that he had unexcused tardies for first and second period yesterday.

One thing we are doing differently is breakfast. He never likes to eat breakfast, and tends to put off eating as long as he can in the morning, and sometimes into the afternoon. This makes him grumpy, and his behavior deteriorates. We tried last year to get him to eat something every morning before school, knowing it would make his day go more smoothly. Sometimes he would eat, and sometimes he wouldn't. About halfway through the school year, he decided he wasn't going to eat breakfast any more. If you know autism, you know how stubborn he can be once he makes his mind up like this. But he loved lunches in the school cafeteria. Since he has a limited number of foods he will eat, we checked to be sure there was always something available that was on his list. They have pizza available every day. He was thrilled. At first he ate pizza every day, but he gradually started trying other foods on the menu, even foods he won't eat at home. Since the cafeteria also serves breakfast, we decided to try it this year. We prepaid his meal plan with enough money for breakfast and lunch for the first six weeks.

As a sophomore, he already knew his way around the school, but I wasn't sure if he would walk from the cafeteria to the classroom after breakfast without someone prompting him, so the first day, I dropped him off at the cafeteria and let his teacher and aides know where he was in case he didn't show up for class. For the first month, I dropped him off each morning, he got his breakfast, ate it, and went to class. When I got the email last night, I asked him if he went to class after breakfast. He said that an aide came and told him to go to class, but he wasn't finished drinking his milk, so he said no.  He didn't have an explanation for the second period.

Since I'd dropped him off on time or early, couldn't imagine why he took longer eating than usual. So this morning, I followed him to see his routine. He walked to the cafeteria, got a scrambled egg and cheese bagel (he never eats eggs at home) and a carton of milk. He sat down, ate quickly, and threw his trash away. Then he walked to his classroom. No one was there, so he got a schedule sheet and started filling it out for the day. When his teacher arrived, I asked her about his tardies, relating his story about the aides coming to get him, and his refusal. She said that he had been getting himself to class on time every day, and they did not have enough staff to send anyone too look for him if he didn't show up in the classroom. He had just walked in with no explanation after she had already taken attendance and marked him absent, so she assumed we had dropped him off after class started. She said she had not marked him tardy for second period, so that must have been an error in the attendance office.

I don't know where he was during the ten minutes or so he should have been in class. The story about his refusal may well be a fabrication, but questioning him further is pointless. When we question him about events, he assumes he is in trouble, and his stories keep changing, getting further and further from reality. Maybe he needed to make an extra-long trip to the restroom. He is extremely private about that, to the extreme of denying that he had a bowel movement, recently or ever. Maybe it was something else. Since he has been so reliable until yesterday, I hope this was a one-time event. Tracking down what actually happened would be difficult to impossible.

Last Night in the Grocery Store

Last night in the grocery store, an employee stopped me. He said he didn't know if I remembered him, but when I was in the store with GL, last week, he'd said hi.

"Oh, yes, you're Colin. He's been talking all week about how his buddy said hi at the grocery store."

"Well, I didn't have time to stop and talk then, but I wanted to tell you how much I enjoyed working with GL when I volunteered in the Special Ed classroom. I'm leaving for college next week, majoring in business, but I almost changed my major to Special Ed because of him."

I told him that I'd been worried about sending GL to high school, wondering if he'd have any friends. "But he has so many friends, the best part of high school turned out to be that all over town, wherever he goes, he's always running into his buddies from school."

"Everybody likes GL." Colin said, "He's a lot of fun. He's such a neat guy."

It was nearly closing time, and the last few shoppers were making their final selections. We chatted another minute or two, I thanked him, and left with a full and happy heart.

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.

IEP meeting next week

GL's IEP meeting is next week. Mama Bear won't be able to make it, so we need to discuss our concerns together, so I can make sure they're addressed. High school has been an overwhelmingly positive experience for him. Despite a major setback when his meds stopped working, he has adjusted rather well. I like this school's SpEd department's emphasis on independence, living skills, and functioning in the community skills. I will be focusing on getting him the services that were in his IEP this year that he never got. Things like PT and OT, which his insurance cut off because the school was supposed to provide them, which the school wrote into his IEP, but then never provided because he was on a limited school day because, well, because the school didn't want to deal with him.

He is now up to a full day two days a week, and three-fourths of a day each of the other three days. I plan to insist on a full day, five days a week for next year. He hasn't had any academic work at this school yet. From what I've seen, none of the SpEd kids get much academically unless they're mainstreamed part of the day; then they get whatever's offered in the classes they're mainstreamed for. The other SpEd kids only get one academic period per day, and it seems pretty lightweight, not to mention aiming for the middle of the class (there's only one SpEd class at this school) and missing most of them. The academic period is the one he's still missing. The two days he's there all day, he has gym that period.

I was not disappointed in the academic offerings for SpEd, mainly because my expectations were so low. There were three main reasons we home schooled him as long as we did:

1. Middle schoolers can be remarkably cruel to anyone who's different.

2. He was learning well at home. I didn't expect the school to teach him much of anything other than how to function in a classroom, which might help with his transition to employment. Whenever we talked with other special needs parents, they were spending more time fighting the school to get their kids' needs met than we were spending home schooling. We did not enroll him in public school until I felt he had learned all he was capable of learning. This came about the end of seventh grade.

3. Since transitions are difficult for him, I did not see the point of transitioning him to public school in eighth grade and then changing schools for high school the following year.

As for behavior management, although we spent hours detailing his behaviors, their antecedents, what works, and what doesn't, they seem to insist on learning by trial and error. It feels a little like when a stranger wants to give you advice about your spectrum kid because they saw Rain Man, but it's worse, because they really think they know more about your kid than you do, because they spent years in school getting book learning about the stereotypical textbook kid with autism. It's enough to make me want to send them this graphic, which I stole from Tom at  Adventures in Aspergers:

That said, I've had to be diplomatic in my approach. This is a small school in a small town. There is only one SpEd classroom and only one SpEd teacher. The PT, OT, and SDPE teacher are shared among the elementary, middle, and high school and, I think, several other schools in the district. When I pass GL's guidance counselor or the school psychologist, or the school social worker or any other of the thirteen people on his IEP team in the hallway, they recognize me, call me by name, and ask about him by name. If I alienate anyone, that's the person I have to go through to get that particular service. I can't replace anyone on his team without transferring him to a different school. At this point, his teacher and all the classroom aides like him and think he is doing an excellent job. He fits in reasonably well with his classmates. Enough mainstream students volunteer in his classroom that he can't walk down the hall, or even around town without meeting one or more of them, and they greet him by name and take an interest in what he is doing. He considers them his friends. Without exception, the staff and student body have been friendly and kind. So when GL isn't getting everything he needs, not even certain things that are in his IEP, I have to intervene, advocating for services, but in such a way that the other party thinks it was her idea.

Praise the Lord, and Pass the Prozac!

Actually, while GL has been on Prozac in the past, it's Abilify I'm writing about today. As you know if you've read the last several posts, we have been working toward a full school day since he started public school for the first time in September. He had a major setback in November when his meds abruptly stopped working. It took nearly two months to find a med that worked. He started Abilify just before Christmas, and it has been a godsend. 

He was allowed to go on his first field trip last week. This is huge. Not only because they were reluctant to take him, for fear of a public meltdown, but because field trips are such a large part of what his class does. The school day is divided into four periods, with one period per day four days a week, and two periods on the fifth day devoted to field trips. These aren't just entertaining time-fillers;  on each trip, the students have an assignment designed to teach them how to use various resources in the community. If you've spent significant time with special-needs kids, you know how much work this can be, and how important it is to their future independence. My son is fifteen years old, and he can't count money or cross a busy street by himself.

Today, his teacher said he is welcome on any and all field trips. This will change his school schedule from roughly half-time to nearly full-time. Praise the Lord, and Pass the Prozac! er, Abilify!

Field Trip

GL went bowling with his class Monday, and everything went well. We're planning to send him on the next two bowling outings, and hoping to get him on more field trips, or at least add more classroom time. IEP season is coming up, and we plan to insist on a full day next year.

His Communication Sheet has been hit or miss. Sometimes they check it, and sometimes they don't. The only problem anyone has reported since last time was GL saying he was going to throw someone in the dungeon. I've asked around, and there doesn't seem to be anything else. Everyone says he is doing well. Since he is doing so well on Abilify, his psychiatrist is tapering off his Invega. We'll see how it goes.

MB and I went away last weekend to celebrate our anniversary. The boys went to Grandma's where they had a wonderful time. We slept a lot, ate too much, and spent a lot of time not doing anything in particular. I bought her the final season of LOST on DVD, which she'd been wanting, and we went to Harbor Freight, where she bought me some tools I'd been planning to buy, and I bought some tools I hadn't been planning to buy. I love you, Mama Bear.

Two Steps Forward, One Step Back

When GL is frustrated, he says outrageous things to get attention. These are different from the threats he makes when his meds aren't working—there's no actual violence, and there is usually an element of the absurd. Yesterday at school, he threatened to stab someone. No hitting or other violence, just the sort of outlandish thing he says to get a reaction. We generally downplay and redirect in these situations because the bigger the reaction he gets, the more often we'll see the behavior. Shock and awe is a recipe for perseveration. Thankfully, he does not attend a zero tolerance school (he wouldn't be allowed to for long) but staff at his school have apparently been trained to take all threats seriously.

Since it worked so well yesterday, he tried it again today. Today he told a classmate that he wanted to stab him to death with bumblebees. His teacher was busy when I picked him up, and I didn't get to talk to her. I only learned about this from reading his chart. At least they're charting again, so we know this now, not weeks from now. No one has said anything connecting this behavior with bowling, so I hope that's still on. We spent hours spelling out his behaviors in detail, along with what works and what doesn't work, but the school seems to insist on learning by trial and error.

Progress is Slow

I can't find it in his IEP, but I know we talked about a Communication Sheet in GL's IEP meeting. Since he either doesn't tell us what happens at school, or tells wildly improbable stories about it, we don't know what's happening until his teacher mentions that he's been having some behavior problem or other for some time now...

We asked for it again at Parent-Teacher Conferences first semester, and she assured us she would make one. We waited, and—Nothing. We asked again at Parent-Teacher Conferences second semester, waited a few weeks, and—guess what he brought home Monday?

It's a simple checklist, one page per week, with a list of behaviors and a blank for each day, so we know whether he did or did not exhibit that behavior. That's all we wanted. There are positive and negative behaviors on the list, so  whether he had a good day or a bad day, something should be checked. Monday's checkmarks indicated a good day, with no problems. Tuesday and Wednesday, nothing was checked. Sigh.

We're also working on extending his school day. Because public school was such a new and different environment for him, we started in September with one class period per day to give him the opportunity to adjust. The goal was a full school day five days a week by Christmas. November 1, his meds abruptly stopped working, and it took almost to the end of December to find the right med and the right dose. So that was a setback. In January, we were confident things were better but, given his behavior in November and December, his teacher and classroom aides were cautious, if not skeptical.

In February, they added lunch. We thought the noise and chaos of the cafeteria would be difficult for him. He has a limited repertoire of foods he will consistently eat, and has difficulty eating with other people until he knows them very well and is very comfortable with them. But he's handled it very well. They have pizza (one of his favorite foods) available every day, and he has even begun to try some of the foods that he eats less reliably. He still has a longer list of foods he won't eat than ones he will, but lunch has become his favorite subject. They make him take a fruit or a vegetable every day, but thankfully, they don't try to make him eat it.

He's starting to enjoy spending time with his friends at school, and wakes up every morning asking if he can go to school today. From all reports, his behavior has been good, but he does get a little loud if anyone else is doing something he thinks they shouldn't.

The next class we want to add is Community Living Skills. This class takes a field trip every day to practice using resources in the community: stores, restaurants, recreational activities, etc.  A school bus picks them up at the school, leaves them at their destination, and returns to take them back to school when they're done. This has been a sicking point. They're not sure how he will behave in public away from the school, and without transportation, can't easily remove him from the situation if his behavior indicates he needs to leave early. I don't have a car during the day when Mama Bear is at work, so I couldn't come get him. We had discussed the possibility of starting with field trips within walking distance, but nothing had been decided.

On his Communication Sheet was a note inviting him to come with his class on their field trip next Monday. They are going bowling. He loves bowling, and the bowling alley they're going to is only 4 blocks from home, so I can come get him if he has a problem. I'm prepared if he does, but I don't expect he will. While being out in public is somewhat stressful for him, he craves it, and does his best to contain any frustrations until he gets to a location where he feels safe to release them. Assuming this goes well, he is invited whenever they bowl there. Encouraging words, prayers, and good thoughts appreciated.

Update

We had parent-teacher conferences. GL's teacher gave a glowing report of his behavior since Christmas. She also answered some questions we had about events at school, since GL's reports are notoriously unreliable. We agreed to work on extending his day, beginning with lunch in the cafeteria, since that's a noisier, less controlled environment, but he can easily be removed if necessary. He usually avoids eating around other people. It took him years to get comfortable enough to eat with his grandparents. But he loves eating lunch with his classmates, and school staff are sensitive to both his sensory and social issues with food, and don't try to insist that he eat everything or anything.

His class takes at least one field trip a week, and he hasn't been allowed to go because the school didn't have a plan for dealing with his behaviors in public. (Argh!) The plan now is to start taking him on field trips here in town, where everything is in walking distance, so I can come get him if need be, because I don't have a car when Mama Bear is at work. I think they'll be pleasantly surprised because lately his behavior in public tends to be better than his behavior around people he knows. If all continues to go this well, he should be up to a full day before the end of the year. I plan to insist on a full day in next year's IEP.

Medication

To a mother who is facing some of the same things:

When GL's meds are working, he is his quirky but lovable self. People who have only seen him at these times have a hard time believing what his behavior is like when they're not working. Even when his meds aren't working, he can sometimes hold it together for brief periods in public. It's at home that all hell breaks loose. Some people have a hard time a hard time believing he needs meds. Those who are by temperament opposed to medicating children "on principle" have never lived with GL unmedicated. Until they have lived with (not just "worked with" where they get to go home at night) long-term (years, not months) a child who truly needs psychotropic medication, both when he is medicated properly and when he is unmedicated, they have no idea what they're talking about. When GL is not properly medicated, no amount of talk therapy, affection, training, discipline, reasoning, dietary intervention, PT, OT, chiropractic, supplements, or any of the other things that have been suggested make the least bit of difference.

And even when his meds are working, he tells outlandish stories. Sometimes he is exaggerating. Sometimes he just makes stuff up. Some stories are plausible. Others are wildly improbable, but not impossible. Others are not remotely possible. Still others are so bizarre as to be largely unintelligible. He is completely unable to see the distinction. On rare occasions, he has admitted to exaggerating, but the more times he repeats a story the more he believes it. Once he decides it's true, no amount or kind of evidence can convince him otherwise. He will just keep repeating the story, which in his mind, makes it more true. It's best to drop the subject. Arguing will only encourage him to perseverate on it.

We have seen this pattern again and again. Here's what happens with GL. We find a med that works. He gradually begins metabolizing it out of his system faster, and needs an increased dose.  He adapts to that dose, and we have to increase it again. (This is assuming he hasn't grown or put on weight. If he has a growth spurt, it accelerates the process.) Eventually, it stops having any effect at any dose, and we have to find him a new med. For more details, look up tachyphylaxis.

He has burned though a new med in as little as six months (not counting the meds that only worked for a few days, or not at all) . Until Trazodone, the longest any med worked for him was 18 months. I'm expecting Trazodone to stop working any time. When his meds aren't working, nothing else makes a damn bit of difference. We had one psychiatrist who wouldn't do anything but increase his dose, even when it obviously wasn't working. He was up to 100 mg of Seroquel 3 times a day, plus another 500 mg at bedtime, and it had no effect. (I knew a 230 lb. man with violence, aggression, and sleep issues. 100 mg of Seroquel would knock him out for the night. GL was 12 years old, and less than 90 lb.)

It took four months to find another psychiatrist who would take GL's insurance. Every day for four months straight, he physically attacked every member of the family, slammed the door hard enough that he broke off the doorjamb and punched out the doorknob, tore pictures off the walls, emptied bookshelves, threw things, pounded on walls, and attempted to break windows. We had to hold him down. He was sleeping less than 4 hours a night, and he wanted company. He would pull our eyelids open to wake us up. We had to put a lock on the basement door because he was trashing the basement every night. He kept screaming, "I'm going to kill you!" Now GL sometimes uses words he doesn't understand if he knows they get a reaction, so one day, between storms, Mama Bear asked him what he meant. He said, "I will put a string around your neck, and you will stop breathing, and you will be dead." When your 12 yos tells you every day for four months, "I'm going to kill you!" and means it, it has a way of wearing on a person.

I tell you all this not to worry you or minimize your son's troubles, but to say, I know. I understand. When you are in the middle of a medication not working, it feels like it is your fault. If only you had more strength, endurance, love, more whatever. You would do the right thing, no matter how hard, if only you knew what it was.  (We call it being "under siege" because it takes over our lives, and it takes all we can do to survive. Nothing improves until reinforcements arrive, and we have no way of knowing when that will be.) It's not your fault. You've seen what he can do when his meds are working, and you haven't changed what you're doing.

We had to fire GL's psychiatrist who wouldn't try a new med. I know, easy to fire, but hard to replace.  But when we found a new doctor, he said getting GL to sleep at night was his first priority, because no one can function long-term on so little sleep.  He started him gradually on a new med (when the old doc did make changes, they were always cold turkey) and within a week, he was sleeping 6-8 hours a night. With the additional sleep, we were able to function better. He continued the gradual increase until we found a dose where GL would sleep through the night, keep his aggression in check, and still function during the day. Then he began tapering off the Seroquel.

Because GL has his ups and downs from day to day, and his behavior deteriorates over weeks or months, it is hard to recognize a medication issue at first. But when the bad days get worse, the good days become rarer, and then disappear altogether, the weeks drag on, and it begins to feel like locking one of us up would be an improvement, I don't care if it's him or me, I know we need to look at his medication. It doesn't always get this bad; I'm getting better at recognizing it in the early stages, but it does sneak up on you, and it does take time, and sometimes trying several meds, to find one that works.

In September, GL started public school for the first time. (Before that we'd homeschooled.) We warned his IEP team about his behaviors. We tried to paint a worst-case scenario, because we feared they would be unprepared for his behaviors and send him home. They assured us that they were confident they could handle anything he might do. We figured, this being the Special Ed department, he couldn't be the first student they'd had with these issues.

Because he has a hard time with functioning in a group, new environments, sensory stimuli, and changes to his routine, we insisted on starting him with one class period, and adding other periods one at a time. Since his school divides the day into four periods, we expected he would have a full school day by Christmas. For the first two months, school went beautifully. He was on his best behavior at school. His teacher and classroom aides seemed to imagine that we had exaggerated his behavior problems. At home, it was a different story. He was grouchy but tolerable during the week, but weekends we were under siege. We more or less expected this. In any new situation, he is on his best behavior at first. He does his best to hold it together as long as he can. This is stressful for him. At home, where he can let his hair down, it all comes out. He doesn't usually melt down around people he knows until he feels really comfortable with them.

After a month, we added a class period. After two months, we had decided to add a third period. Before an official change could be made to his schedule, he began yelling at people at school, kicking lockers in the hallway, and hitting other students. The school balked. They would not add another period. They said they didn't have a plan for these behaviors, they didn't have the staff to deal with them, and they couldn't have them at school. They seemed to expect us to fix his behavior without their help, and may have been looking for ways to get him off their hands entirely. Um, we don't have a little remote control at home that we can use to control his behavior at school. We warned you about his behaviors; it's your job to come up with a plan. He has a right to a free, appropriate public education, and having autism does not take away that right. A half day does not fulfill your obligation. We started him with a partial day to make it easier for him to adjust, not to make your job easier. He is as adjusted as he's going to get. If you need more staff, that's your responsibility; we can't hire them. And did I mention that since the school provides all his therapies, his insurance has cut them off, but because he's not in school those periods, he doesn't get them?

We were working on the only part of the problem we had control over: adjusting his meds. Since his behaviors started coming out at school, he stopped hitting people at home. His psychiatrist agreed: He said we should not have to choose between GL hitting people at school and hitting people at home. We spent November and most of December trying different meds at different doses. Some worked better than others. On one med, he was hitting people at home and at school. The week before Christmas, he started Abilify. We saw some improvement immediately. Once we found the right dose, the siege was over. He's been back to school three weeks now, and late last week, his teacher commented that his behavior had improved markedly, and we might be able to add another period soon. We still have a long way to go to get him everything he needs from the school, but at least now we are headed in the right direction.

More Wild Stories

Goldilocks continues to tell outlandish stories, with no idea what people will believe, much less what would happen if they did. Given the wild stories he tells about school, I shudder to think what he tells the people at school about home. I hope they have the sense to be skeptical.

Before school this morning, according to GL, his little brother had already stabbed him multiple times with a knife and cut all his fingers off. I passed this story on to an aide when I dropped him off. Let them get used to taking his stories with a grain of salt. Or a shovelful. As he insisted the other day, "All of my lies are true!"

How Was School Today?

Like Big Daddy Autism, I have a hard time finding out what my son did in school. He rarely volunteers information, and when he does, it's unreliable. If I ask what he did at school, I may or may not get an answer. If I get an answer, it may or may not have anything to do with school. If it has anything to do with school, it may or may not have anything to do with reality.

He has recently learned to lie, but his lies are usually so absurd no one would believe them. On the rare occasions he hits on a believable story, given his record, we are still skeptical. But once in a while he tells the truth, just to mix things up a bit. And he does some strange things sometimes, which he may or may not realize are strange and may or may not tell us about.

Here is an example of a conversation we had about an event I'm pretty sure never occurred:
PB: What did you do in school today?
GL: I went to the gym.
PB: What did you do in gym?
GL: My teacher made me do push-ups and sit-ups until I threw up.
PB: How many did you do?
GL: Four.

Fallen on Hard Times

While presumably still fighting crime by night, by day, Bruce Wayne apparently pays the bills by teaching at my son's high school:

Schedules

I've been wanting to tell you about GL's transition to the public school, but I haven't had much time to write. One thing we insisted on in his IEP was that he start out with one class period per day and gradually work up to a full day. I'm sure he's capable of a full day, but he's not capable of making such a big transition all at once. He is now up to about a half day, but because of scheduling complications, he starts school at a different time every day of the week.

On top of that, his school has numerous late starts and early dismissals built into their calendar. There's a minimum of one late start and one early dismissal per month, but most months have more. October has many more. A late start can be a two hour delay or a three hour delay. A scheduled early dismissal is a half day. There was an unscheduled early dismissal in early October so students could pay their respects to a teacher who had been killed in a motorcycle accident. IIRC, school let out an hour and a half early that day. On the days they have a late start or early dismissal, all classes still meet, but the class periods are shortened. I have three pages of charts to read to figure out what time to take him to school and what time to pick him up each day.

Today, I misread the schedule. On Thursdays, he has only one class, which meets second period. We arrived at the same time as all the other students. I checked and found out that today was a two hour delay. There was no place we could hang out for an hour, so we had to walk back home, wait half an hour, and walk back to school. Naturally, this did not sit well with GL. He handled it admirably, but I'm sure we'll pay for it later.

Girls!

GL has always liked girls. And not just because many of the people, both professionals and volunteers, who assist him in enjoyable activities happen to be female. He has said about more than one therapist, "I like her because she's pretty."

I can't count the number of times one or more young ladies (who may not know him from Adam) have seen him looking sad or worried or distressed and come to his aid. But he is fourteen, and has the feelings common to teenage boys. After meeting with his teacher at Parent-Teacher Conferences (I'll blog about that later) we stopped by the office to pick up school pictures. The office was crowded, so I waited in the hall while GL and MB stood in line. A girl in line behind them recognized GL and tried to introduce him to two of her friends. I can't get over how friendly and polite the students from his school are. If I'm walking down the sidewalk on Main Street and a high school student I don't know is passing the other way, he or she will invariably offer a friendly greeting. He glanced at them, ran away, and stood in the corner. MB told him he didn't have to talk with them if he was uncomfortable; he could just say, "No thank you. I don't want to talk." and he did not have to stand in the corner. 

He came back, glanced at them again, and said, "No thank you. I don't want to talk." MB got the pictures and they left. 

A few days later, when he was relaxed enough to talk about it, he asked MB, "Remember when we got those pictures?"

She said, "Yes, were those girls making you uncomfortable?" 

He said, "They were trying to be nice to me, but all I could think about was boobies!"

He wanted to go to the Homecoming Dance last week. He had never been to a dance before, and I didn't know how he would handle the noise, the dim light possibly combined with flashing and/or colored lights, the crowd of students, or the social complexities, all in the unfamiliar gymnasium (he hasn't had P.E. yet) with hundreds of students he doesn't know, and possibly no one there he does know. I asked if anyone from his class were attending, and at that point, no one was.

My attitude toward new activities is to encourage him to try them if he is interested and to help him participate as fully as he can, but have an escape plan ready in case he needs it. I talked to the administration, and they said I could wait in the cafeteria so if he needed to leave, he wouldn't have to wait for a ride, we could just go. We bought him a ticket.

MB was worried about how he might respond if the dance were too much for him. She was also concerned that he might insist on dancing with someone without asking first, or even if she (or he) said no. In the next few days, he asked several times what he would do at the dance, and we told him there would be music, it would be very loud, but he could leave if it bothered him, he could dance to the music, and he could dance with someone, but only if they asked first. 

The dance was scheduled to start at GL's usual bedtime. His behaviors tend to come out if his meds are late, but his bedtime meds put him to sleep. MB was concerned that sensory overload might trigger a meltdown. Lately most of his meltdowns have been less physically intense; he mostly yells at people, but he keeps getting louder and more belligerent, and absolutely does not calm down without the right intervention. I pointed out that if he started yelling, no one would be able to hear him anyway, and if he started pounding on walls or slamming doors as he usually does when he begins to spiral out of control, I could still get him to the car pretty quickly, then medicate him and put him to bed. But in a new situation, you can never be 100% certain what GL will do. What if he pushed or hit someone? So I gave him his bedtime meds just as we headed out the door, but kept his PRN in reserve. 

I had made him change his clothes because, as usual, the ones he was wearing were covered with peanut butter. He selected his dinosaur shirt, the one he wore the first day of school, and a pair of jeans. When we got to the dance, I explained at the ticket table that this was his first dance, and I wasn't sure how he would handle it, but I would be waiting in the cafeteria if he needed me. He handed over his ticket and got a wristband, which I helped him put on. Then I showed him the cafeteria, told him he could come there and get me if he needed me, and sent him down the hall to the gym. My heart left my body and walked away from me.

I sat at a cafeteria table with my book and my earplugs. Even without the earplugs, I couldn't hear the music, but I could hear the beat. I was glad for my earplugs, not because of the music, but because of the noise the students were making in the cafeteria. The music in the gym was too loud to allow conversation, so whenever anyone had something to say, they would grab their friends and run down the hall and through the cafeteria doorway. The girls would all shriek, "I'm having such a good time!" and hug each other. The boys would goof around a bit, and they would all run out the other cafeteria doorway, and up the other hall to the gym. 

I managed to read a few pages. After fifteen minutes, I became uneasy. I hadn't expected him to last this long. Was he panicking somewhere? Would he stay for the whole dance? Almost exactly half an hour after we arrived, he returned to the cafeteria between two young ladies.

He looked dazed. They said they had found him standing in the corner by himself, looking worried. I asked him if he was having a good time. He said it was okay. I asked him if he wanted to dance some more. He said it was too loud. I asked him if he wanted to go home. He said he did. Both girls offered to dance with him. He didn't answer. I asked him if he'd like to dance with the girls. He said no, he was tired and wanted to go home. I thanked the girls, and we left.

As we passed the ticket table, I told the woman I'd talked to earlier that he had lasted half an hour, and that that was longer than I'd expected. I was just sharing the good news, but she offered a refund. Feeling a little awkward, I said she didn't have to, but it would be fine if she wanted to. She said it was only fair because he only got to stay half an hour, and handed me the door price. I told her we'd only paid the advance price, so I handed the money back. She ran back to the table, got the proper change, and refunded the advance price. I thanked her, and we walked out to the car. On the way home, GL said, "It was two times too loud."

I asked him if he would like to try going to another dance sometime if we could protect his ears. He thought he would, if he weren't so tired. I asked if he'd like to have some ice cream at home. He said he would. When we got home, he told MB, "It was too loud, I was too tired, and I thought Daddy was lost."

He went straight to bed, apparently forgetting all about the ice cream. And that's the news from Lake Wobegon, where all of the women are strong, all of the men are good-looking, and all of the children are above average.

Holes

People on the Autism Spectrum tend to have uneven development. They may excel far beyond their peers in one area, yet lag far behind their general developmental level in another, while a skill you would assume they would have, given their development in other areas, may be missing entirely. These "holes" or "gaps" can give results on cognitive and social developmental tests that have been compared to Swiss cheese.

Before enrolling GL at the local high school this fall, we took him to his doctor for a checkup and to get the immunizations recommended for a high school freshman. In the exam room, a nurse set out a copy of the same developmental questionnaire we answer at all his checkups, the one for typically-developing 0-6 year olds. GL picked it up and began reading the questions aloud. The nurse said, "Maybe I should get the 6-12 year old form."

GL answered, "No, I still can't cross the street by myself."

First Day of School or, let not thy left hand know what thy right hand doeth

Yesterday was GL's first day of high school, first day of public school, and first day of anything but home school. On the whole, it went very well, but there was some confusion about his schedule.

Back in May, when we worked out his IEP, we insisted on starting him with one class period a day, and gradually adding to his schedule as he adapted to a full day of classes. At home, when I gave him an assignment, he would hurry to complete it so he could have free time. When he was on-task, he would finish his work in about an hour. His school has four 95-minute class periods a day. We felt this change, on top of the social adjustment of just being in school would be a bit much for him to take all at once. And so it was written in his IEP.

About three weeks before school started, I looked on the school web site to see if we needed to do anything else to complete his enrollment. The web site said there was an online registration, and parents would be getting an instruction packet in the mail the following week. I waited a week, and no packet. I downloaded the packet from the school web site. It said to go online and enter the user name and password that had been mailed with the packet. I called the school to get a user name and password. They said they had no record of GL in their computers. I explained that he was a freshman, but was coming from home school rather than the local middle school, and that we had already met with his IEP team and they had written his IEP. They said we would have to meet with a guidance counselor and set up his schedule before they could put him in the computer.

We made an appointment and met with his guidance counselor, who had been in the IEP meetings, but hadn't said much. He said that since the class period GL was starting with was second period, and was vocational, not academic, he thought it would be better to start him with two classes: his first period class, where he would be in a classroom with his main teacher, and second period, where he would be going through the school collecting the recycling. We hesitated for a moment, but we thought it would be good to start him with an academic class right away and, since he had enjoyed the recycling when he visited, he could probably handle that afterwards. So, under the impression he had cleared it with the necessary people, we agreed.

At New Student Orientation, where freshmen get their official schedules, locker assignments, and combinations, there was none for GL. But we saw his counselor there, and he assured us that the verbally-agreed-on schedule was set.

The day before school started, I got a phone call alerting me that on the first day, there would be a brief homeroom meeting, and first and second period would be delayed. Since his first period class is in his homeroom, it sounded fine to me, so I just confirmed what time to bring him to school and what time to pick him up. I dropped him off for homeroom at the agreed-on time, and all appeared well. When I picked him up, the person who met me at the door said that everything had worked out fine today, but we really needed to stick to his IEP and consult with his teacher before making schedule changes.

I explained that it was fine with us either way, but that his counselor had suggested the change and we agreed, thinking everyone was on board. She said she would check into it, but to bring him only to second period on Friday, and she would find out what to do about his schedule for next week.

Later that afternoon, I called back to find out what time to bring him for second period, since I didn't have the schedule firmly in my memory, and we had nothing in writing. That's when I found out what had happened. His counselor had come up with the idea of the schedule change. He had called GL's teacher at home and, not having a copy of GL's IEP in front of her, she agreed. So he made the change without telling anyone else. We were caught in the middle, not knowing what was going on, and everyone under the impression that we had made the change and had left  them out of the decision. I explained that we were happy to go along with either plan, we just needed to know what time to bring GL to school and what time to pick him up.

So it was settled that we would stick to the original plan: GL will start with one class period a day, recycling, second period, and we will meet with his teacher and discuss adjusting his schedule at the parent-teacher conferences at the end of the month.

The Hitchhiker's Guide to High School

We took GL to New Student Orientation. We weren't sure what to expect going in and afterward, we weren't sure what he'd got out of it. So we asked him what he'd learned. He said, "The most important rule in high school is "Don't Panic!"

School Pictures

School pictures were today. Taking pictures before school actually starts, so people can come in, get their photo taken, and leave, without hanging around waiting all day and wasting the better part of a school day—why didn't they think of that when I was in school?

I got GL cleaned up, and we walked to the school. He insisted on taking his weighted lap blanket. We must have hit it at a good time—there was only one person ahead of us. He was too cool to smile for his picture, so his mama made him sit again, and smile this time. No one shows up your pretensions of coolness like Mama! GL insisted on holding his blanket for the picture. I did convince him to hold it in his lap instead of hugging it like a teddy bear. As soon as she saw the blanket, the photographer visibly relaxed. She treated GL with dignity and respect—she didn't talk down to him—but with an extra helping of patience and gentleness. Sometimes having something that marks you as different can be good.