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."

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.

Continuing the Conversation Re: Perseveration

I love it when blogging turns into a conversation. Kelly, from Unplanned Trip To Holland, left some excellent comments and questions on my last post. I started to answer in the comments, but my reply grew long enough, I thought it would work better as a blog post. With comments like these, I'll never lack for post topics.

Kelly, I think your comments were 100% on-topic, and I totally agree. I think communication with the school merits its own post. I thought about pointing GL's teacher and classroom aides (we had hoped for a one-on-one, but there are 3-5 aides for the classroom, plus student volunteers) to this blog, but I need a place to vent about the school where their interpretation of what I said won't come back to haunt me.

Perseveration seems to have two components:

1. It's a barometer of his overall stress level. We do what we can to reduce his stress level and try to adjust his meds to help him cope, but being on the spectrum is stressful, and our kids seem to find more things than average to stress out about.

2. It functions to make something happen that he wants to make happen.

a. Sometimes it's partly related to anxiety about an upcoming event. GL's perseveration usually takes the form of repetitive questions. Sometimes he's just trying to grasp the situation. We try to explain, with varying success. Other times, he knows the answer, he's just seeking reassurance. In those cases, repeating the question back to him and letting him answer gives some reassurance, and eventually reduces the repetition somewhat. Why he thinks he needs us as the middleman in this process I don't know, but that's what he seems to think. Simply answering his question when he knows the answer does NOT help. He has never asked us to ask him a question, but I suspect he thinks that is what he is doing when he asks the same question repetitively. I arrived at this conclusion by trial and error.

b. If he has something to say that he finds funny or interesting, he likes to say it. The fact that he has already said it 794 times in the last hour is irrelevant. We try to redirect him. I think you know about how well that works. Other tactics are even less successful.

c. His sense of humor works something like this: If saying "boogers" was funny the first time he said it, (I meant the first time, when he was three) it is 3,472,963 times as funny when he says it the 3,472,963rd time. See above.

d. It pisses his brother off. Sometimes he just wants attention. He doesn't always know how to interact with his brother in mutually enjoyable ways, and he either doesn't understand or doesn't accept that BB sometimes has other things that he wants to do (read a book, play by himself) or needs to do (homework, chores) so he picks a fight to force interaction.

e. It produces an emotional tone he can understand. Subtle shades of emotion annoy him because he can't interpret them. The only way he managed to learn how to interpret facial expressions and emotional cues at all was by rote memorization of indicators via Gaining Face. (If your child struggles to interpret facial expressions, I strongly recommend this program.) But if an emotional state is not on their list, or a facial expression does not match what they demonstrated, he usually can't interpret it, and this annoys him. He usually attempts to elicit an emotional response he can interpret. Anger is one of the easier responses to elicit.

So yeah, in most cases, there isn't a whole lot we can do to reduce perseveration, and what does help doesn't reduce it all that much. So how do we cope? School gives us some respite. Oops, I just realized that could sound like our district was providing respite care beyond the school day so Mama Bear and I could spend some time alone together. Ha! ha! ha! Right. Like that will ever happen! I only meant that he is in school 2-3 hours a day during school hours. MB is at work during this time. We are still fighting to get him a full school day.

After school, BB sometimes goes to the library for some peace. It's two blocks from home, and GL can't cross the street by himself. Mama Bear and I tag-team it. Monday nights, BB and I have Civil Air Patrol.  Sometimes I hang out at the library and use their Wi-Fi. One or two nights a week, I go into town and wander around Menards (a regional chain similar to Home Depot, but with better prices. I call it my toy store.) or even Walmart.

We stop at the library every day after school, and GL checks out DVDs. We used to limit both boys' screen time pretty severely, but I've decided it's no great sacrifice to let GL rot his brain. He's very much into Disney and Pixar (of course) and lately even more into Blue's Clues and Bear in the Big Blue House. He has a portable DVD player and, for my sanity, I make him use headphones. This Christmas we got a second-hand Wii. (From an anonymous giver. Not something we could have afforded, even second-hand.) That at least gets him a little more active.

We have a pair of ear protectors (The boys call them "quiet headphones".) from Walmart's sporting goods department. Marksmen use them on the target range. We bought them to help GL deal with sensory issues, but now BB uses them to block out noise when he does homework. I have a pair of earbuds. I never liked earbuds before because I found them uncomfortable and the sound quality was terrible. This time, I got some with three sizes of ear cushions, so I get an exact fit. (Ear Pollution Ozone. a good compromise between quality and cost.) They are more comfortable than any other earbuds I have owned, and because they fit, they make a seal that actually blocks out most noises even without playing anything on them. Playing music makes GL completely inaudible.

Oh, and about that snow? People were overreacting. We got 3-4 inches. The only place in our county that posted a cancellation last night took it back.

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!"

Literally

All day yesterday, GL had been whining that he needed an "adventure". An "adventure" is when someone gets in the car with him, drives at least the minimum distance he thinks necessary, and buys him a snack. If either the drive or the snack don't meet his satisfaction, the "adventure" doesn't count. And as soon as anyone agrees to a particular snack, he starts negotiating upward.

MB was planning to go grocery shopping and, while GL would count that as an adventure, (provided the snack meets with his approval) taking him along is usually more adventure than MB wants to deal with. I had to be elsewhere, so I couldn't watch the boys. MB decided she could handle bringing GL if BB would help by getting items off the shelf and into the cart while she pushed the cart, read the list, and tried to contain GL. In the car, on the way to the store, MB reviewed her expectations with the boys: "We are going grocery shopping. BB, I want you to get things off the shelf as I read them from the list. GL, I want you to hold on to the cart. And you're going to have to move."

"But-but-but," said GL, "I don't want to move! I like our house!"

Griffin would have been proud.

Waking Up is Hard to Do

I haven't needed an alarm clock in years. The boys always wake me up with their bickering. I was up late last night, and then had trouble getting to sleep because of allergies. This morning, the boys didn't fight. GL was up early, as usual, but he didn't wake BB or start a squabble. He came into my room to make various announcements as he always does in the early morning and, as usual, I went back to sleep. When I finally woke up enough to see what time it was, it was time for GL to leave for school. I ended up getting him there fifteen minutes late. Waking Up Is Hard To Do.

The Big Stinker

This morning, I heard GL yelling at BB, so I went to see what was the matter. He was standing outside the bathroom door yelling, "BB, unlock the door and come out of the bathroom!"

I told him, "BB wants some privacy. Leave him alone, and he will come out when he's done." GL has a problem with privacy. Since GL had already had plenty of time in the bathroom, and it was time for him to leave for school, we left. When we got back, MB was trying to unlock the bathroom door from the outside. BB had not been in the bathroom, but had not contradicted GL because he was, in fact, asleep at the time. GL had locked the bathroom door, blamed his brother, and left for school.

Resting at Last!

 MB and BB spent the morning getting organized and starting to pack for camp next week. It's a camp for people with disabilities and their families. GL will have a one-on-one buddy to assist him as needed with each activity. MB will go to the Moms' group, and not have to worry about him. BB will be in a mixed group, some disabled and some sibs, but a different group from his brother. It's the only way to convince him he's "off-duty". No, we don't ask him to look after his brother, but he tends to think of himself as a third parent, despite our efforts to convince him otherwise.

I think we are starting to feel a bit better, but we still all have the sniffles and feel tired and out of sorts. GL never admits to being tired, sick, or in pain. He just gets irritable and looks for someone (usually BB) to pick a fight with. He wouldn't stop annoying everyone, hitting his brother, or hitting himself, so I gave him his PRN. It didn't seem to help. He insisted that he felt fine (as usual) but I noticed a cough and a sniffle, so I gave him Tylenol and Benadryl. MB had some errands to run, and she took BB so they could both get a break.

GL would lie on the couch, start to close his eyes, then hop up and run to another room. A minute or so later, he would be back on the couch. I put on some music and convinced him to take his shoes off. Then I went to the kitchen and started preparing a batch of soup for the Crock-Pot. In a few minutes, he was asleep. He never sleeps during the day. I know we may pay for it tonight, but I think it's worth it.

P.S. He's up now, but he slept for an hour and a half in the middle of the day. I think he needed it.

EAA AirVenture Oshkosh

Lt (Papa) Bear and Cadet Airman Bear are working the EAA AirVenture Oshkosh. We record the location of every aircraft and track every takeoff and landing. If an aircraft goes missing, we launch a search and rescue mission. How many 12 to 18 year olds get to participate in something like that?

Cadet Bear's Second Orientation Flight

Civil Air Patrol cadets don't just get one free aiplane ride, they get a series of flights, with a syllabus listing what they are expected to learn on each flight.

Here the pilot explains how to inspect an aileron.

Cadet Airman Bear points out the left elevator.

Buckled in and putting on his headset.

Taxiing toward the runway.

Ouch!

GL bumped his arm.
GL: Ouch! I bumped my arm! I think it's broken!
BB: Can you move it?
GL: Yes.
BB: If you can move it, then it's not broken.
GL: You mean I won't have to get a sling and crutches?

One Incredible Dad

That's what Mama Bear said to call this post.

The cake is peanut butter ice cream sandwiches covered in whipped cream and chocolate syrup, and decorated with fondant. Brother Bear came up with the idea, and Mama Bear executed it. No, she is not a professional, but it looks pretty good, wouldn't you say? And she cooked steaks for dinner.

I also got cards from the boys, and a copy of Big Daddy's Tales From the Lighter Side of Raising a Kid With Autism, by one of my favorite bloggers, Big Daddy Autism. He blogs about life with his son, who is about the same age as ours and who, like our son, has autism. I'd say I have one incredible family.

Hodgepodge

It's hard to find enough time to blog lately. GL's IEP is signed, sealed, and delivered. BB is getting better at mowing, but I still have to check his work. Baseball season is underway. After last season, when nearly every game was rained out, partly due to a lot of rainy Saturdays, and partly due to the low-lying location of the park, which seems to flood every time there's a sprinkle, and the Parks Department giving us a hassle about rescheduling games, (they won't let us play if the grass is wet, but they don't want to let us schedule a makeup game either) we (or I should say the league president) got us moved to the main baseball park, where all the regular Little League teams play, instead of the old park, where they had been sticking us because, even though we are also members of Little League International, in the city's eyes, Challenger Division is apparently the read-headed stepchild. We play at 9 a.m., and have to be off the field at 10 a.m., when the regular Little League teams arrive.

The first game of the season, the the weather was sunny, with a temperature in the upper 90's. And the city had locked us out of the dugouts. I'd never heard of dugouts that could be locked before, but these have a chain link fence from the ground to the roof, and a padlocked gate at the entrance. The head of the Parks Department had decided that the new dugouts "didn't look nice enough," and his solution was to lock the kids out. Some of these kids have difficulty thermoregulating. This is, after all, a league for children with disabilites. At the old park, they could have at least found shade under one of many large trees. The new park was built only two or three years ago. There are six diamonds, and I don't think there's a tree within a half mile of home plate on any of them. The Parks Department did provide two Easy-Up shelters, each about a third the size of a dugout, as the only shade for six teams. Besides being rather small for the size of the group, they were secured to the ground behind two of the dugouts. If your child were playing on that field, he or she could stand in the shade or watch the game, but not both. And only two dugouts (out of 12) even had a shade nearby. Not to mention these shelters don't provide much shade between 9 and 10 a.m. The good news is that the other Little League teams were locked out, too, and their complaints get taken much more seriously. Their complaints made the news on TV.

GL's strength and coordination got worse, while his tremors increased, he started sleeping more, (12-15 hrs a day) and occasionally drooling. His psychiatrist reduced one of his meds, and we're starting to see some improvement. His pediatrician referred him to a neurologist, who is starting with an EEG, to see if there is anything else going on.

We had bought tickets to the high school's end-of-the-year talent show, but when we arrived, everyone was standing outside on the sidewalk or in the parking lot. There were a fire truck, and ambulance, and several police cars in front of the building. We heard sirens, and a fire truck and an ambulance arrived from a neighboring town. The school psychologist recognized us from the IEP process, flagged us down, and filled us in. One of the lights in the auditorium had "popped", releasing a large cloud of smoke, which had set of the fire alarm. The fire department is right across the street, so they arrived right away. The building was quickly evacuated, but they had to wait for the smoke to clear (and clean up the broken glass, I imagine) before they could let people back in. Since we live less than a mile from the school, we went home to wait. We checked back several times, but they eventually canceled the show for the night. They rescheduled the show for a couple weeks later, and we attended. GL enjoyed the show, and several people recognized and greeted him in the hallway during intermission. The special ed class put on a substantial portion of the show, (about half of the first act) and it was good to see how well it was received by the other students and parents.

It's a Beautiful Day in the Neighborhood!

GL's IEP meeting was Tuesday. There are 13 people on his IEP team, (not counting us) and they were all there except the school OT, who was out having a baby. She called ahead to say she would send her report with the PT, which she did. After each team member went over her report, and gave us the chance to ask questions or make suggestions, we went through the draft version of his IEP. Everything we asked for was in it, and several things we thought of and discussed during the meeting were noted for inclusion in the final IEP.

One thing we insisted on was starting him with one class period per day (this school's class periods are 90 minutes) and working up to a full day. He has been allowed to visit and participate for one class period at a time (twice, so far, with more planned before the end of the school year) and both times, he did well, he enjoyed it, the staff said he was wonderful, but it took so much out of him, he came straight home and slept the rest of the day.

One woman (there were so many people in the room, I had a hard time keeping straight who was who) kept pointing out problems with everyone's ideas. I was beginning to  wonder if she were the school attorney. Then I realized she was the district director of special education. She did bring up some valid concerns, like how are we going to accomplish everything in GL's IEP in 90 minutes a day? She also suggested some workable solutions to these problems, so she wasn't just shooting down everyone's ideas. I think his IEP will be more workable now that we have some of these wrinkles ironed out. His IEP looks very good on paper. I know these things don't always work out as well in practice as they do on paper, but I'm glad we got so many good things written into it.

The meeting lasted three hours. GL offered suggestions when he could, and otherwise sat quietly, listening and doodling on a sheet of paper. He lasted two hours before he needed a break. We all took a five minute break, then a support teacher took him for a walk while we finished the meeting. We were all exhausted when it was done. We went out for lunch. (GL requested Chinese, because he wanted "cranberry goons".) Then we went home and he slept the rest of the day.

BB has been planning to mow lawns this summer to earn money for his CAP activities. (And those incidental expenses, like meals out.) We bought him a lawn mower for his birthday. A rather expensive present, but if it works out, it should save us money in the long run. I assembled the lawnmower Tuesday afternoon, (more complicated, time-consuming and frustrating than it sounds) gave him a quick tutorial, and he practiced mowing our lawn under close supervision. He'd never mowed before. He did pretty well for his first time, but I thought he needed a little more practice before hiring himself out to strangers, so he's mowing for PBP tomorrow.

Wednesday was therapy, and GL's OT commented that he seemed unusually tired. He has a med to be given PRN for anxiety and aggression, but we try not to give it on Wednesdays, because it makes him  tired, decreases his muscle strength, and leads to intention tremors, so his OT can't get any productive work out of him. She wondered if we'd given it. We hadn't. He was still that tired from the day before. She also mentioned that once he starts getting OT from the school, his insurance may stop paying for private therapy.

We've been looking for an outside peer activity with weekly meetings to get him used to interacting with his peers, and hopefully build some social stamina for school. Even when everything is going well, the social aspects of the classroom are harder for him than the academic subjects, assuming those are at a level he can understand. If he'd been in a school classroom up until now, I doubt he would have learned anything. Why enroll him now? Well, he continues to progress, however slowly, in reading and writing, but in other subjects, he appears to have learned all he is capable of learning. If the school can teach him some math, great, but I'm not holding my breath. For him, home was the best environment for academics, and those take priority. Now that those are mostly done, and we feel he is more able to handle the "hidden curriculum" that most students pick up unconsciously, but he has to be explicitly taught, we'll let the school work on socialization, vocational skills, ADLs, recreation, community involvement, safety, and hundreds of others. Not that we have ignored these, but we felt home and the neighborhood, i.e., the real world, were the best place to begin teaching them. Yes, there are a portions of each skill the school can teach best, and now they'll have the chance, but looking back, it's remarkable how small those portions are, and how unimportant they were to his earlier development. Now that he's come so far, they are among the remaining hurdles between now and his post-high school life.

Back to an outside peer activity: there is a Scout troop for people with disabilities forming, and we thought it might fill the need. We attended a meeting tonight. There were five other youth there with their parents. Four of them were far below GL's functional level. The fifth was somewhat above his level, and trying to be the center of attention by being the expert on everything. GL spent most of the meeting acting about half his functional age.

They were working on their first merit badge: Nutrition. The teacher gave a lecture on portion sizes, then passed out crayons and worksheets and pictures of food to color. Then she went around and helped the students color their pictures and do their worksheets. No one but Mr. Expert-on-Everything (who colors perfectly within the lines) was much interested in the lecture or worksheets or coloring. GL did a little paperwork, then got bored and spent the rest of the meeting talking baby talk, intentionally giving wrong answers, and spinning in his swivel chair like it was Disney's latest attraction. He said he had fun, but when I asked him what he enjoyed, he said, "The chair." I did not drive an hour each way so he could spin in a swivel chair. There are plenty of office supply stores closer to home. And the socialization was definitely having a negative effect. Maybe we'll find another activity closer to home that's a better fit. Or maybe we'll just wait for Little League season to start.

Friday night the high school is putting on a program, and the special ed students have a part. We bought tickets. Saturday is a transition seminar. Sunday morning is church, and Sunday afternoon is a community youth theater production of Robin Hood. Several youth from our church are in it, and we are planning to attend. I've thought several times that I must have lost my mind to schedule so many events in one week, but for most of them I didn't have a choice of "when". They were already scheduled, and I had to choose "yes" or "no". I wish I had said "no" to a few more things but, other than Scouts, I'm not sure which ones.

Question of the Week returns

I participate in several Yahoo groups related to homeschooling, disabilites, and other topics. One of the group moderators had started posting a "Question of the Week" as a discussion starter. I enjoyed reading the questions, responding, and reading the responses, but it took time away from blogging. Since the topics were generally related to the topics I blog about, I decided to post some of my responses here. Shortly after,   the moderator found herself busy with other obligations, and the Question of the Week fell by the wayside. She's back, and has given the Question of the Week its own Yahoo group.

Usually the question is a single sentence, but this week we have some background story:

I am having a day where I would like to scream, yell, and cry all at the same
time. My kids are fighting non-stop--actually escalated into a fist fight and
school is completely unproductive today.

I have older teens, so I run into great difficulty when it comes to coming up
with disciplinary measures. My kids have activities almost every day and
evening--and I would love to remove them--but other people depend on my kids to
participate in them, such as being Cub Scout Den Chiefs. So I feel that taking
those things away would really be more of a penalty to the others that depend on
them. I have thought about removing computer, cell phone, electronic games, but
I am not sure how effective that would be.

I don't take the approach that "boys will be boys"--and I do generally
discipline them; but apparently what I have done in the past is not working; and
I am really frustrated today with my kids.

I don't know if they just need a break from each other as they do spend so much
time together and do nearly all of the same stuff. I can't figure it out; I
just know that I feel like a parental failure today.

I need some creative ideas.

What do you all do for disciplinary measures in your home?

You can read the responses there. Here's mine:

My boys are 14 and 12, and they excel at annoying each other. When one of them wants attention or is just bored, he finds his brother and tries his most effective annoyance techniques, one after the other, until he gets a response. Despite hundreds, perhaps thousands, of repetitions, he is still surprised when his brother finally gets mad and yells at him. It just never seems to occur to either boy that:

1. Although these behaviors get attention, it may not be the kind of attention he wants.

2. If he annoys his brother enough, his brother will get mad.

3. When his brother gets mad, he will yell at him, and possibly hit him.

4. This will make Mom and Dad unhappy.

5. Mom and Dad are already unhappy with him, because his brother is supposed to be doing schoolwork, and even if his brother has kept his temper so far, he is distracting him.

6. If Momma ain't happy, ain't nobody happy.

7. He started this whole process, and could have avoided it by leaving his brother alone. 

The brother who started it thinks the other brother started it by hitting him. To him, bringing up what he did is only changing the subject. If we keep bringing the conversation back to what he did, he will finally admit that he did something, but minimize it: "All I did was tickle his neck."

Neglecting to mention (even refusing to admit, if it's pointed out) that:

1. Brother hates having his neck tickled.

2. He knew this, and did it anyway.

3. He had already done 47 other things specifically designed to annoy his brother.

Punishment has not been effective, since each boy believes he is entirely innocent, and we are punishing him for his brother's actions. We do point out the above-mentioned facts, and maybe, with time, repetition, and maturity, they may begin to sink in. Perhaps the boys will someday allow the possibility that we might be right on one or more points.

In the mean time, they have work that needs done. If they are both working, I put them in separate rooms where I can keep an eye on them, but they can't see or hear each other. If one of them finishes before the other, he is allowed, and on most days required, to find a quiet activity in a place where he can't bother his brother, and his brother can't bother him. 14 yos usually goes to his room to watch a DVD (with headphones). 12 yos usually goes to the basement to play LEGO. We've recently discovered (with his concentration issues, who'd have thought?) that 12 yos can take his schoolwork to the public library (two blocks away) and actually be focused and productive. 

Once they have both finished their schoolwork for the day, they usually get along better. If they don't we separate them.

Cadet Bear's First Orientation Flight