Learn to Lead Audio Download by Brother Bear

As some of you know Papa Bear and I are in CAP (Civil Air Patrol). For cadets (Teen members) we have to take tests based off of the information in our “Learn to Lead” books. Soon I’m going to take a review test and I heard there are free audio downloads of each chapter. I like to read and listen at the same time because that helps me pay attention better. So Papa Bear and I started looking for them. We looked for about an hour but every site gave a link to a site that only had a computer version on it. Then I thought why don’t we put the computer version on Papa Bear’s Kindle which has a computer reader on it. Then we had to convert the computer version to kindle version. Once we did that we found the audio downloads at a site called Stripes to Diamonds. Under each achievement, if you click on “download an audio file of this chapter” you can download it. So if your looking for the audio downloads go to:

http://www.capmembers.com/cadet_programs/stripes_to_diamonds/

This made me smile

Panic Sunday

Let me tell you about the day I set my hair on fire. I was helping Brother Bear “make” waterproof matches for his CAP ground team gear. I tried to light a match to light a candle (to melt the wax, to cover the match head). As I struck the match the lit match head broke off the match and flew into my hair. The next 10 seconds were a little crazy. I remember shouting to ask my family where the flames were, so I could put them out. I could hear flames and smell brunt hair, but not see fire! Brother Bear was screaming “your hair’s on fire” and going for the sink sprayer(we were in the kitchen). Then someone, Papa Bear, I think, pointed to the fire and I used my hands to put the fire out. All the scary is over now and I’m fine. I’m already getting quite a bit of teasing, because I’m usually the one telling others how to be safe with fire. Darn you Diamond Match Company for making cheap matches that now has given us a new Mama Bear Story.

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.

What goes around, comes around

Kelly from Unplanned Trip To Holland has just given me the Liebster Blog award. So of course, I had to go look up the rules so I could break them. Except she didn't post them. She did, however post her answers to a list of questions that I assume were part of the award process. They were the exact same questions that were part of the Sunshine Award. Which I just got last week. In fact, she tagged me for this award in the comments on that post. Strange things are afoot at the Circle K.

Tracing it further back, I did find one rule about limiting the award to bloggers with fewer than a certain number of followers, but there was some disagreement about whether that number was 20 or 200. Wait a minute! I can't even keep up with reading all my blogs, and now I have to keep track of how many followers they have?

Hmm, I do kinda like the idea of an award for the little guy. Especially since some  new bloggers come along, follow my blog, post comments, and within a year have WAY MORE FOLLOWERS than I do! But I really do like her blog. It's like, one of my favorite favorites. And she probably didn't know that I had just answered these questions because I was a smartass and just posted my answers without the questions.

Italia what Ima do. I'll post my answers again, this time, first the answers, then the questions. I usually just say, "Read the blogs in my sidebar." I started a long post saying something nice about each of the blogs in my sidebar, but it was getting so long no one would read it all, assuming I ever finished writing it. Instead, I'm starting a new feature where I choose a "Featured Blog" from time to time, (basically, whenever I feel like it) and post nice things about the blogger, along with this random logo I stole off the internet.

(I typed "random logo i stole off the internet" in Google Images, and this is the first thing that came up.) They can come claim the award, copy and paste the logo, and do whatever they want with it. Or if they don't want to post it on their blogs, they can just leave a comment here, so I know they read my post. K? If they don't see it, serves them right for not reading my blog!

The answer is:
Cyan.
The question is:
What is your favorite color?

Mama Bear.
What is your favorite animal?

I agree with Dee's answer.
What is your favorite number?

Coffee.
What is your favorite drink?

I've never Twittered. I was about to quit FB when Social Fixer came along and made FB tolerable. Now I can keep up with all my friends if I want to, but I hardly ever check FB. I have 491 FB friends, and it's just the same people posting the same kind of stuff over and over.
FB or Twitter?

Reading.
What is your passion?

Giving presents. To myself.
(Do you prefer) Giving or receiving presents?

July 4, 1776.
What is your Favorite day?

Freshly ground whole wheat.
What is your Favorite Flower?

Coming Soon: Featured Blogs

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.

The rumors of my death have been greatly exaggerated

After vomiting Monday night, GL missed the first day back to school on Tuesday as a precaution, but he did not throw up again. The rest of us had sore throats, runny noses, and generally felt crummy for a few days, but are pretty much back to normal now. And I am still way behind on reading my blogs. 

GL is doing much better on his new med, not hitting or threatening people. His reports about school are completely unreliable, and the school is not as communicative as we would wish, but the reports we have been getting are all good. He is asking repetitive questions, mainly about his birthday. We have shown him the calendar, and attempted to explain numerous times how many weeks and days until his birthday, but he just doesn't get it. On more than one occasion, he woke his brother up in the middle of the night to ask him when is birthday was.

It is snowing, and some schools have already cancelled for tomorrow. GL is confused and worried about his schedule under the best of circumstances, and asked several times today whether he had school tomorrow. I wish I knew one way or the other.

On the way home from school today, I noticed he was sticking his tongue out. I asked, "Are you catching snowflakes with your tongue?" 

He said he was. I asked, "What do they taste like?"

He said, "They taste like dirt!"

Sanka, Are You Dead? Yah, Mon!

I haven't had time to read blogs in a while, much less post. Even when I check my email, I only scan my inbox for items that require my immediate attention. Yesterday was the last day of what GL's school calls Winter Break in order to avoid offending hundreds of imaginary people. So I thought today would be the day we could begin getting back to our routine. I'm glad Christmas Vacation was only eight days; disruption to routine is bad enough, but GL always thinks everything is permanent. He asks about school many times a day, but he keeps insisting that he was expelled from school and can never go back.

Yesterday we all woke up with sore throats. Last night, GL started throwing up. I think I'll be sitting on the couch a lot today; the laundry can wait. Enough spreading the sunshine!

Which brings me to the award I got this morning. Rules are here.

1. Thanks, Dee.
2. http://www.snippetsnstuff.com/2012/01/how-lucky-am-i.html
3. Cyan. Mama Bear. I agree with Dee's answer. Coffee. Neither. (I didn't log in to Facebook for two weeks and didn't miss it. Logged in to see what I'd missed. Nothing. And I'm not a Twit.)  Reading. Giving presents. To myself. July 4, 1776. Freshly ground whole wheat.

Read the blogs in my sidebar. They each deserve an award.