Monday, February 4, 2013

We finally have a diagnosis!


The day after GL turned sixteen, we finally got a diagnosis. He has a chromosome 17 q12 x1 dn microdeletion. This doesn't change the fact that he has autism, but 100% of males with this deletion have autism, so the genetics clinic considers the chromosome disorder to be his primary diagnosis, and autism to be a feature of that disorder. He was part of the first study linking this disorder to autism, but now there is enough data in to confirm it.

This doesn't change our expectations or plans for him, but it is strangely reassuring. In his particular case, we know that autism is the result of a missing gene, not an environmental factor. It wasn't anything we did. It is also a de novo deletion: we both have the piece he is missing, but God chose to leave it out when making him (some would call it a random mutation) so he didn't inherit autism from us. That also explains why his brother does not have autism, and relieves our fears that this was a factor in any of the miscarriages.

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Tuesday, November 27, 2012

Autism Spectrum Quote

The eyes are the windows of the soul…
SO STOP STARING INTO MY WINDOWS!

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Tuesday, October 16, 2012

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.


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Friday, October 5, 2012

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.

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Monday, September 3, 2012

Thursday, August 23, 2012

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.

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Wednesday, August 1, 2012

Internal monologue


This is how I suspect people on the spectrum experience most conversations. I have some spectrum tendencies, and I struggle to respond appropriately and still hear the other person's meaning over the internal monologue. Go to the original comic, roll your mouse over it, and read the hover-text; it's even more telling.

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Summertime Blues

Summer has historically been a difficult time for GL. With the longer hours of daylight, he has even more trouble sleeping than usual, and it's often in the summer that his meds become less effective or stop working altogether.

This summer, he has been getting up in the night, usually for an hour or more at a time, and often multiple times in the night. Then he's up by 5:30 am, (some days as early as 4:00) wanting help, attention, or company, and frustrated that we aren't up and ready to start the day. During the day, he has that tired look in his eyes, not to mention dark circles, and is irritable and demanding. By 3:00 pm, he is screaming and pounding on the walls. He continues screaming and pounding on and off until bedtime, and often until his bedtime meds knock him out. Some days, he starts the screaming and pounding at 2:00 pm or noon, and some days, it starts first thing in the morning, and continues all. day. long.

I try to keep it real here, the good and the bad. While he's had plenty of better times, we have also seen much worse. Some people think I should focus on the positive, and if I'm having a bad day / week / month, shut up, I guess. I see both optimism and pessimism as dishonest. If people come here to give or receive moral support, pretending everything is always fun, or even always okay, is not helping. So I feel like I should blog more. I've had things to blog about, good things, bad things, even a remarkable number of funny things have happened. But I'm tired, I have a seemingly never-ending to-do list, and most days, blogging just feels like one more thing.

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Thursday, July 12, 2012

I walk into the bathroom and stand in front of the toilet. GL follows me into the bathroom, watches me unzip, and says, "Hi, Dad. What are you doing?"

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Wednesday, June 20, 2012

Dolphin Tale

A friend took GL to see Dolphin Tale this morning. He was so excited, when he got home, he ran through the door and shouted, "Hi, Mr. um, hi, Dad! Guess what? I saw a movie!"

BB asked, "What movie did you see?"

GL answered, "A Dolphin's Tale. It's about dolphins being saved by people. You wouldn't understand it. Maybe when you're older, I'll teach you about dolphins."

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Tuesday, June 19, 2012

Walking home from the library this morning, we met an elderly woman.
Elderly Woman: "Hello."
Goldilocks: "Hello! and Welcome to the Bonus Features!"

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Sunday, June 10, 2012

Church Picnic

Today was a church picnic. That means GL spent most of the day every day for the past week repeatedly asking if we were going to the church picnic. The answer was yes. Every. Single. Time. But he can't take yes for an answer. All through the service this morning, he kept asking if we were staying for the picnic. As soon as the service was over, he began asking if he could call Grandma about a visit as soon as we got home from the picnic. He never cares what's happening right now, he only cares about what's happening after that. Sometimes, when he's asking a repetitive question, I ask him what I said last time. He can repeat it back to me, but that doesn't keep him from asking again. And again. And again. And Again. And AGAIN. AND AGAIN!

Although we provide both verbal and nonverbal cues (which he usually misses) and explain to him repeatedly and in great detail (which he repeats back and claims to understand) how irritating his repetitive questions are, any time we show the slightest exasperation, it takes him entirely by surprise. Even though he can answer these questions himself every time when asked, to him, it's as if each time he asks is the first time, and our exasperation is coming out of nowhere. To him, we are the ones being unreasonable.

We enjoyed chatting with friends (between repetitive questions), the food was wonderful, I ate too much, and then the boys and I joined a game of Ultimate Frisbee. That is, BB and I played. GL followed people around the field for a bit, and then wandered off. Mama Bear brought a craft project to work on, and she sat and chatted and crafted with other crafty ladies.

BB would have stayed all day (and probably all night, too) if he could have. I'd had enough food and games, and we'd all had more than enough of GL's asking if he could call Grandma when we got home, so after three hours, we loaded up the car and left. GL and BB immediately started fighting. I stopped the car, and MB switched seats with BB. GL started hitting MB, so I stopped again, and we gave him his medicine. He continued nagging and whining all the way home. And that's what a successful outing looks like with the Bear family.

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Thursday, May 3, 2012

Featured Blog

(I typed "random logo i stole off the internet" in Google Images, and this is the first thing that came up.) 

Sometimes I'll get all excited about an idea and make big plans, and foolishly tell people about them. Life immediately gets extremely busy and complicated so that I don't have time to follow through, and once again, it can laugh in my face. If you want to, you can read my original post about my Featured Blog feature, and laugh at me, too. I'm just now giving the recognition I promised nearly four months ago.

And the first Featured Blog goes to autism blogger and fellow misanthrope... (Is that an oxymoron? Are there rules for misanthropy? Go ahead, make some, I dare you. That should get you about as far as making rules for autism.) Where was I? Oh, yes, fellow autism blogger and misanthrope (and that's what I like about her) Jillsmo at Yeah. Good Times. Her blog defies description, so I'll just copy the introduction from her profile:
I have 2 beautiful boys: Child 1 is 10 and is autistic. Child 2 is 6 and OMGISN'T. I have this blog because lots of random shit goes through my head throughout the normal course of a day and I need a place to put it. Mostly I just ramble incoherently about nothing. I also curse a lot. Sorry, Mom.
You've been warned.

There are a number of interesting features on her blog, but my favorite is "All Kids Do That". If you have a child on the autism spectrum, you deal with some challenging behaviors, not to mention some challenging sensitivities that set off challenging behaviors. The thing is, and this is why autism parents stick together, when you mention these issues, the average parent of neurotypical children (and many professionals who have limited experience with autism) will either disbelieve you, or mistake your child's behaviors and sensitivities for garden variety childish behavior and whimsical preferences, and either suggest that "all kids do that" and you just need to learn to live with it, or give you detailed (and completely useless) instructions on how to fix the problem. It's like calling your boss from your hospital bed to tell him you've been admitted to the hospital with pneumonia, and having him say, "I had a runny nose once. Just take some cold pills and be back at work tomorrow."

Yes, problems with picky eating, doctor visits, hating school, not sleeping, and so on are not uncommon, but with autism, we are talking about these issues amplified by several orders of magnitude. Really, if you have a friend or family member dealing with autism, and want to have appropriate empathy, or if you are a professional or studying to be one, and want to understand, until you have lived with autism, you will never completely understand, but "All Kids Do That" will give you an inkling of what we deal with every day.

I have a deep respect for professionals who work day after day with children (and adults) on the autism spectrum but, if you get to go home at night and not deal with it for eight hours or more, it's not the same. If you have a child with autism and feel completely alone, we understand. Our kids may have different issues, but we've experienced them at a level of intensity beyond the nightmares of most people.

So read Yeah. Good Times. I strongly recommend starting with "All Kids Do That." Jillsmo, you can come claim the award, copy and paste the logo, and do whatever you want with it. Or if you don't want to post it on your blog, you can just leave a comment here, so I know you read my post. K? Or just totally ignore me. Whatever.

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Monday, April 30, 2012

Piano Man

On the one hand, I'm glad this kid is enjoying himself. He even nails those tricky minor chords in the intro. On the other hand, I'm tired of people asking what my son's savant skill is. Enjoy:

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Saturday, April 14, 2012

A Milestone

Over a year ago, I posted about GL taking the garbage out. After one of the many professionals he's seen pointed out that verbal prompts are the hardest to fade, I typed up a written checklist, which we keep on the refrigerator. When he stops working, or seems confused, I ask, "What's next?" and he reads the next item on his checklist and does it. I still have a dream that someday he will take out the garbage all by himself, but at some point in the last three months, he has gotten to the point where, on a good day, having him take out the garbage is very slightly less work than doing it myself!

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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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Friday, March 30, 2012

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.

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Thursday, March 22, 2012

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!

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Tuesday, March 20, 2012

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/


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Friday, March 16, 2012

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.

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