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!

Autism Dad Blogs

I'd been thinking about posting about autism dad blogs and asking people to list the ones they know of. Sunday Stillwell, who blogs at Adventures in Extreme Parenthood, beat me to it. Thanks for getting the ball rolling, Sunday. And since you have way more followers than I do, I'm hoping the word will spread far and wide. Everyone else, go read her blog (it's one of my favorites) and post links to any autism dad blogs you know of. And while you're at it, could you post the link to her blog, and ask your readers to post any autism dad blogs they may know of in the comments?

Some autism dad blogs I follow:
http://www.stuartduncan.name/
http://www.adventuresinaspergers.com/
http://blogginglily.blogspot.com/
http://anotherautismdad.blogspot.com/
http://www.bothhandsandaflashlight.com/
http://happytrbl.blogspot.com/
http://lebelinoz.blogspot.com/
http://lous-land.blogspot.com/
http://otscomic.blogspot.com/
http://bigdaddyautism.com/

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.