Goldilocks and the Three Bears

Learn to Lead Audio Download by Brother Bear

2012-01-31T17:16:00.005-06:00

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

2012-01-31T15:03:00.000-06:00

Panic Sunday

2012-01-29T19:50:00.000-06:00

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

2012-01-23T11:18:00.000-06:00

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

2012-01-14T11:18:00.000-06:00

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

2012-01-13T10:33:00.000-06:00

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

2012-01-12T22:36:00.000-06:00

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!

2012-01-03T09:02:00.001-06:00

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.

Stollen

2011-12-19T13:21:00.000-06:00

Papa Bear's Papa brought us some baked goods. He said, "This is stollen, but I didn't break any Commandments."

http://en.wikipedia.org/wiki/Stollen

At long last

2011-12-06T19:56:00.003-06:00

These are pictures of some of the items I made at camp this summer. Sorry it has taken this long to post them, the Bear Family is having an off year when it comes to photos. These images are the fourth attempt at photographing these projects. Brother Bear's camera ate my images twice! Then I tried again with a friends camera again, no joy. Finally Papa Bear took these for me and they are wonderful, and so is he.

In the above photo I have one of the wine charms, the beaded cheese knife and some easy memory wire bracelets that I helped the camp moms make. We had a great time. Even Angie a self pro-claimed craft hater made something she loved.

In the lower picture I have the Hugs and Kisses woven bead pattern in different sizes. I love how the same pattern can look so different if I change the size of the beads. Some of these are dainty and some are chunky monkey, but they all look great.

How Was School Today?

2011-11-30T09:35:00.000-06:00

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

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

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

Nasty Dan

2011-11-21T19:32:00.000-06:00

Someone finally posted the video of our talent show entry. I'm Johnny Cash, and GL is Oscar the Grouch.

In Memoriam

2011-11-11T16:31:00.002-06:00

We had not even had the chance to announce the fact we were expecting a new life in our family, when he passed into eternity. I feel it’s wrong not to acknowledge his brief pre-born life.
In memoriam:
Isaac Watts “Bear”
November 11, 2011

Literally

2011-11-09T12:03:00.000-06:00

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.

Fallen on Hard Times

2011-11-09T09:42:00.000-06:00

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

Schedules

2011-10-27T11:19:00.000-05:00

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

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

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

Fall Cleaning

2011-10-21T18:12:00.000-05:00

October is nearly over, and I hadn't started my Fall Cleaning yet. I always start with the windows because that's the task I dread most, and it has to be done before it gets too cold out. I did the big window in the living room today. That's the hardest one. All the other windows tilt in, so you can clean them from inside.

Sleep What?

2011-10-17T18:32:00.002-05:00

I will be the first to admit that I've done some "odd" things in my sleep. Such as talking, laughing and waking Papa Bear to go check the baby (when we had not had a baby in years. Our youngest at the time was 8!). But last night takes the cake. I was having a very real & vivid dream about changing clothes in a very small department store dressing room. I was struggling to change blouses in a room so small I kept hitting the wall with my hand. It was too real, I found this out when I woke to go to the restroom & found myself just as God made me! O.K. laugh, I did. Now I want you to rat yourself or your mate out! Post in the comments the oddest thing you or someone in your family has done in their sleep. I can't wait to see if anyone can out "odd" the dressing room dream.

Oh, Happy Day!

2011-10-15T11:49:00.003-05:00

Tonight Papa Bear & I will get the night off! A good friend of the family is coming over to give us a night of respite. I can't wait! We have been in need of some time off. We get 20 precious hours. We leave at 5:01 PM but I'm not counting the hours(5) or anything. Have a great day, we will.

If I'd Only Known it Was This Easy!

2011-10-13T10:37:00.000-05:00

Full title:
Life's Little Secrets and Shortcuts for Dummies - Solve Life's Big Problems In Seconds

Girls!

2011-10-09T22:07:00.000-05:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Another Example

2011-10-08T13:21:00.001-05:00

Another example of uneven development: Yesterday GL was in his high school's Homecoming Parade. The first thing he wanted to do this morning was watch the stack of Baby Einstein DVDs he checked out from the library. Tonight, he's going to the Homecoming Dance.

He loves getting DVDs from the library, especially Disney, which I can understand. He also likes quite a few of the titles aimed at toddlers and preschoolers: Baby Einstein, Sesame Street (especially those featuring The Most Annoying Muppet Ever), Dora the Explorer, Bob the Builder, Caillou, Barney, ad nauseam. He likes comics and books about comics and cartoons, ranging from Mickey Mouse to Spider-Man, to Scooby-Doo, to politcal cartoons. Lately he has returned to board books. He has also developed an interest in books and videos about potty training, which I find odd, because this hasn't been an issue for him in years. Maybe it's his idea of bathroom humor?

Holes

2011-10-07T13:05:00.000-05:00

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

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

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

My Prince came & it was sloppy.

2011-10-06T17:37:00.003-05:00

Goldilocks likes to tell Mama to "be the Princess", which means to pretend to sleep so he can kiss me on the cheek to wake me up. We play this game all the time, but today he said "be the Princess", I laid down closed my eyes & waited. Then it happened he hit me with the biggest, wettest raspberry kiss I've ever had. My Prince is sloppy.

Tru dat.

2011-10-03T00:18:00.000-05:00

Goldilocks Relaxes after a Rough Day at School

2011-10-01T08:01:00.000-05:00

It's A&W, people!

Possibly the hardest thing that he ever had to do...

2011-09-28T13:33:00.000-05:00

The week in review

2011-09-25T22:04:00.001-05:00

My first week at new job was great. I’ve learned more about the company and I think it’s going to be a great fit. God has been doing great things too. We have had no insurance since July. The old new job had a 120 day waiting period, now I have to wait 30 days for the new new job to be insured. Well all that to say with money so tight, being unemployed for 6 weeks (with no unemployment benefits due to a loop hole for non-profits), but God has made sure we have had all we needed. This week He out did Himself. I went to get Brother Bears’ asthma meds. We use the same one but it’s $200 a pop so I decided he needed his more than I needed mine (Mamas do dumb things when money gets tight). Well long story short when I went to pick it up, the Pharmacist said “We had a coupon that could only be used by someone without insurance. It gets you a free month supply” God is so cool! Next I decided to call in mine too (our church helped us so we could afford it). Well when I picked mine up she said “Guess what we had two coupons, isn’t it your lucky day!” I know it was God not luck. Thanks so much Lord for taking care of us.

“Are not two sparrows sold for a penny? Yet not one of them will fall to the ground apart from the will of your Father. And even the hairs on your head are all numbered. So don’t be afraid; you are worth more than many sparrows.” Matthew 10:29-31 (NIV)

Waking Up is Hard to Do

2011-09-21T11:45:00.000-05:00

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 new new job starts tomorrow

2011-09-18T21:15:00.000-05:00

As most of you know in July I got the ax from my caregiving job at an institution for the mentally disabled. I spent about a month looking for a job better than the local Walmart (no offense, but minimum wage won’t feed my family). I found one that started in early August. It was waaayy more physically challenging than the interviewer lead me to believe. The first shift job often had shifts that went to 9 pm, and 11 hour shifts both days every other weekend. Well long story short I have looked for & found a job that looks a lot better & I start in the morning. Here’s to a brighter future.

Good News / Bad News

2011-09-16T18:10:00.000-05:00

The Good News: GL has been wiping the jelly off his hands after making a sandwich.
The Bad News: He has been using my jacket for a napkin.

2011-09-14T17:48:00.000-05:00

Someone had this for a Facebook profile pic. If you copy it, you're trying to kidnap what I've rightfully stolen.

The Big Stinker

2011-09-14T10:08:00.000-05:00

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.

It's been a hectic week in Lake Wobegon

2011-09-08T18:02:00.000-05:00

Dee at http://www.snippetsnstuff.com/ sent me an award, but I'm just now getting time to acknowledge it. If she hadn't notified me in my comments, I still wouldn't even know about it because I'm so far behind on reading blogs. Apparently I'm supposed to tell you 7 things you didn't know about me and pass this award on to an unspecified number of bloggers.

Seven things you didn't know about me? I guess that depends on how long you've been reading this blog. You should go back and read Dee's list; it is much more interesting. Here are seven things I'm pretty sure I haven't mentioned here:

1. I never walked around Las Vegas with an icepack on my boob.
2. You're not any more likely to see me in a gown, tiara, necklace and earrings than Dee in the same get-up. Considerably less likely, in fact.
3. I don't have a time capsule.
4. I am only vaguely aware of who Stevie Nicks is.
5. I love thunderstorms. They are like the Best Fireworks Show Ever. Tornadoes, not so much.
6. I am completely unable to smell most roses. Maybe it's one of those weird genetic things. The leaves smell like a freshly mowed lawn. The flowers have no scent that I can detect. The few roses I can smell smell like old lady perfume, but very faint.
7. I love going to potlucks and sampling different foods. I cook most meals at home, but my wife usually does the cooking for potlucks. Does that make me a freeloader?

I'm going to wimp out and say read the blogs listed on my sidebar. If any of them want to come claim the award or pass it on, fine. We now return to our irregular schedule.

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

2011-09-02T13:01:00.000-05:00

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

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

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

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

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

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

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

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

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

The Hitchhiker's Guide to High School

2011-09-01T06:39:00.000-05:00

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

It's a Rule!

2011-08-30T10:26:00.001-05:00

Every time we go anywhere, no matter how routine, we review the rules for that place with GL. He doesn't come up with the same rules every day, so that lets me know which rules he's forgetting. Of course, sometimes he makes up his own. As we were preparing to leave for the library yesterday, I asked, "What are the rules for the library?"

He answered, "No shouting, no yelling, no red meat!"

School Pictures

2011-08-29T16:48:00.000-05:00

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

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

Why we home schooled our autistic son

2011-08-24T09:59:00.000-05:00

Year after year, we faced skepticism at every turn about our decision to home school GL. First we would get a halfhearted defense of the idea that only a professional can teach a child, especially an autistic child, to read and write. (When we had him tested for public school enrollment, those very professionals were amazed to find his reading, vocabulary, and verbal skills far beyond what they would expect, given his cognitive abilities. His math skills are much more in line with what they would expect. His handwriting is messy, which is not surprising, given his poor fine motor skills. They are providing PT and OT. And he can't spell worth a darn.) His skills are all over the map, but patient teaching and individual attention day after day, year after year, from someone who knows him very well, and with no change of teachers in ten years, have allowed him to make the most of the abilities he has.

When they see that line will fail, everyone throws down what they believe to be the trump card: "But what about socialization?" It has apparently become an article of faith in America that:

1. Social skills are the sine qua non, the ne plus ultra, the raison d'être, the 42, and the e pluribus unum, of not only education, but employment, life, the universe, and everything,

2. Public school is the only place social skills can be learned,

AND

3. Unstructured social situations (the playground, the locker room) with little to no adult supervision, where the kids are encouraged to "work things out for themselves" and adults don't generally intervene until there is bloodshed, a broken bone, or severe bruising, and then more likely than not will take the side of the aggressor, are the best places to learn social skills. (Bullying and not getting caught are social skills, after all.)

Call me a heretic. I believe the purpose of education is academic learning. I've met plenty of socially well-adjusted home schoolers. I've met plenty of socially inept people who still earn a good living. There is more to life than socializing, which I believe is overrated. The happiest and most productive members of any group are those who first know themselves well as individuals. God is more concerned with your treating people ethically, morally, and kindly than with your making them like you.

People on the autism spectrum don't just lack certain social skills their peers take for granted, they often also lack the ability to read the social cues by which their peers typically learn these skills. If they can't absorb these skills by osmosis, they must be explicitly taught, which most public schools are slow to do. Expecting a child with autism to just pick up social skills along with academics, and without being taught is like expecting a child with extremely poor vision to learn to read without glasses. Expecting him to learn social skills on the playground or in the locker room is like teaching him to swim by nicking an artery and throwing him to the sharks.

I've seen situations like this one happen far too often. To a bully, an autistic kid is the perfect victim: www.helpinghandschildren.com/zform/Bullying.pptx

(He also has OCD.)

These facts, coupled with the facts that GL will do anything other kids tell him to, and confess to anything he is accused of, whether he did it or not, led us to keep him out of public school until now, even if it meant giving up services he would otherwise qualify for. Looking beyond high school, his options are to sit around watching TV all day, while someone else pays the bills, or enter some type of vocational program. He may or may not be self-supporting, but he needs useful work. (I suspect he will make some money, but not enough to live on.) He's gone about as far as he is likely to go academically, but at this point, the public school looks like our best connection and transition to vocational programs. We have enrolled him with fear and trembling.

When we made this decision, we waited a year to enroll him so he would be entering high school. The cruelest people I've met are middle schoolers and adults who never progressed emotionally beyond middle school or high school. We had him tested and got an IEP written during spring semester. He starts high school next week. So far, everything looks encouraging. School staff have all been friendly, helpful, and understanding. They've been supportive of our making the best choices for GL, whether we chose to enroll him or not. They've had only good things to say about his accomplishments while home schooled. They listened when we told them about our observations and experience. They put everything in his IEP that we asked for. He visited his class a few times last year, and both Sp.Ed. and regular students recognized him and greeted him in the hallway.

But the most important thing we've learned from other autism parents' stories is: Don't. Trust. Anyone. Or prehaps, Trust, but verify.

GL must be having a good day today...

2011-08-19T17:07:00.000-05:00

I'm not counting the minutes till his bedtime yet. I usually start the countdown about 4 p.m.

I Can Do It Myself!

2011-08-18T15:43:00.003-05:00

I've recommended autismherd before, but this post is especially good. So often, we do things for our kids just because it's less messy or easier. That's why I make GL take out the trash. When I told one of the professionals who work with him about his taking out the trash, she commented that verbal prompts are the hardest to fade, so I transitioned him to a written checklist, with each step listed as a one-word instruction. He made the transition well, and began to acquire the skill of working from a written checklist.

Although I try not to, I do fall into the pattern of helping him with tasks he could do himself, at least for certain tasks. For example, one of the few foods he eats is peanut butter and jelly sandwiches, but he wouldn't eat the crusts. He was a bit messy. He could make his own sandwiches; he just couldn't cut the crusts off. He would take a few bites out of the middle of the sandwich and throw the rest away. Yes, it was every bit as messy as it sounds. If I asked him to pull off the crusts, he pulled off and threw away more than he ate. For a while, I made sandwiches for him. It was less messy, but I seemed to spend all day making sandwiches. If there were a sandwich-making machine, I would have bought it. Then I tried cutting off the crusts for him, and having him make his own sandwiches. That worked. After a couple of years, I got tired of cutting off his crusts. One day, I asked him if he could try eating a sandwich with the crusts on. Apparently he was ready. He tried it, and has been making his own sandwiches ever since. But there is a fossilized layer of peanut butter and jelly on every surface he touches.

We're Working on That

2011-08-17T16:12:00.001-05:00

We're always on the lookout for those little skills everyone else takes for granted but GL seems to miss. On the way to the library this morning, he said, "I have to go to the bathroom. Is there a bathroom at the library?"
I told him there was. When we got there, I showed him the location of the restrooms. Then I thought I'd make sure he could read the signs. I pointed to the sign over the men's room. "What does that say?"
He answered confidently, "Men!"
I pointed to the sign over the women's. "What does that say?"
"Women!"
I asked him, "Which one do you use?"
"Women!"
I guess we need to work on that.

My Kind of Town

2011-08-12T22:59:00.000-05:00

There are two traffic lights in our town. They are about a mile and a half apart. On a Friday night, I can stand in the middle of Main Street, see the light at the south end of town, turn around, and see the light at the north end of town.

Vacation- Day 6

2011-08-12T22:06:00.001-05:00

Friday is always the best day, the shortest day, and the worst day of camp. Because it’s the last day of camp. In the morning the Moms group practised our skit for the talent show at the close of camp.
All the different age groups of kids were in their own groups. Each age group also had a skit. The Moms group got to perform first, because we all wanted to have good seats to watch our kids in the talent show. The theme of camp this year was “Shake it up cafe,(finding God’s recipe for your life).” All the skits tried to use the theme. The Moms got a little side tracked, because of our name. Our group was called the Mama Mias. We had some wonderfully creative ladies(I mean you! Shelly & Kelly!) that rewrote the ABBA song” Dancing Queen” for our skit. It was so super, I’m going to share it here. To get the full affect you have to hum “Dancing Queen” to yourself. You have to!

Cooking Queens
Chop it up
Throw it in
Having the time of our lives

Rachael Ray
Paula Dean
You only envy me

6 am and the crock pots full
Carrots chopped and they’re cooking slow
Stirring up the batter
Getting out the platters
We’re in the breakfast zone

No one else can cook like us
We get you ready in time for the bus

Lunch box in your backpack
Gogurt for snack
Have a great day!
and when we get the chance

Chop it up
Throw it in
Having the time of our lives

We are the cooking Queens
Counters clean
it’s only 6:15!

Cooking Queens feel the heat from the sizzling meat
Oh ya
Chop it up
Throw it in
Having the time of our lives

After the Moms all of our fantastic kids also had skits, too many to recount here. It was a unbelievable day. Goldilocks made it through a group picnic that included everyone involved with camp. That’s a couple hundred people with a kid who HATES crowds. He did so well. I’m so proud of him. He asked if we could take our food to the Moms tent instead of the main eating tent. We ate there with only a few other families with the same crowd issue. We had a peaceful lunch. Both boys even entertained themselves while I took a few minutes to teach the “Hugs & Kisses” bracelet to a Mom that had been volunteering when I taught it earlier in the week. The best part of the whole day was that I was in PJs at an insanely early hour. I did take the boys back to the pool after dinner in our room, but when we returned from the pool, back into PJs I went. I’m lazy on vacation, but isn’t that the point?

Vacation- Day 5

2011-08-11T20:20:00.002-05:00

Today Mom's camp began with a wonderful communion service. It was the first time that I ever had the joy of breaking the bread for another person,while sharing the words of the communion "The body of Christ broken for you" and with the wine "The blood of Christ shred for you" It was very touching.
Later in the day, I taught the "Hugs & Kisses" pattern of beading to three other Moms. The Ladies I taught were quick studies they had the pattern half way finished in just a few hours. Man,I'm proud of you,Emily,Pam,and Cindy. Again I promise pictures will come after I get home. Again today I had too much sun & ended up with a killer headache. The boys were so patient as I took a nap in the middle of the day. I almost didn't believe these were our kids, taking good care of sick Mama instead of whining & complaining that they didn't have as much time as they wanted in the pool. Sometimes our kids surprise me in a good way.

How to Care for Your Smartphone

2011-08-11T17:49:00.000-05:00

Vacation- Day 4

2011-08-10T20:04:00.002-05:00

Today, I led the craft at camp. We beaded cheese knives & wine charms. It was fun. Even the most un-crafty Moms could do this craft. In years past, many of the less skilled crafters didn't care for the crafts because they required more experience than most of them had. Nobody wants to do a craft that they can't do well. This year I think everyone enjoyed it. Pics will be posted after we get home, as I forgot my USB cord. I will also post pics of some of my own crafts at that time.

Vacation- Days 2 & 3

2011-08-09T23:36:00.002-05:00

Day 2- We had a super time. I learned much in the Moms group about de-junking & getting Goldilocks ready for school (our boy is going to public high-school in just a few weeks! Sob!) and had a fun craft,tie-dye. Unfortunately I also got a monster sun related headache, so when the boys when to bed at 7:30pm so did I.

Day 3- We got to camp on time!!!!! Yeah me! (I'm not so good at being on time on vacation) The boys ran off without even saying good-bye. You got to know them to know that shows how much they love this camp. I had a super time again. Today we talked about refocusing, with God as the center of our focus. And all the rest falls into place. I also got to show off my beading projects to my friends. I am beginning to be a crafter, like the kind who do craft shows, but I first wanted to show my work to those I know & trust. This group of Moms is so great! I not only got feedback on my skills, I sold a lot of my projects & had a couple of special orders. I just finished the special orders and noticed it's almost vacation Day 4. I'd better get to bed.

Vacation- Day 1

2011-08-07T22:46:00.000-05:00

The boys & I are at the hotel on our first day of vacation. We are having a great time, but I've already had a minor injury. I got kicked by Brother Bear in my voice box as we were both diving for the same dive stick in the pool. I'm fine, just a little sore. We miss Papa Bear (His idea of a restful vacation is staying at home alone.), but are looking forward to Christian Disciple Farm Camp in the morning. I am helping with the bead craft at camp this year, I can't wait.

My Favorite Blogs

2011-08-04T21:01:00.000-05:00

I've added to the lists of my favorite autism blogs and my favorite home school blogs. (See sidebar.) Visit, comment, share the love!

Jewel has a new Fan!

2011-08-04T18:04:00.000-05:00

The first and last time I heard Jewel, I thought, "Whatever." But she got GL to sleep during the day when he really needed it. He has been calm ever since he woke up.

Resting at Last!

2011-08-04T16:26:00.000-05:00

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.

2011-08-03T20:16:00.000-05:00

From Breakfast Safari

Update

2011-08-03T13:23:00.000-05:00

Mama Bear found a new job, which she started this week. It's full-time, with benefits, but pays 20% less than her old job, so we are considering where to go from here.

We all have some kind of sinus / allergy thing, with headache, runny nose, irritated eyes, and sore throat. Even GL got it this time. BB ran a fever briefly, but so far, no one else has. We're all taking cold medicine at night, otherwise we keep waking up because we can't breathe. If we take it during the day, we get sleepy, but without it, the pain makes it hard to focus. Pray this passes quickly.

A phone number you should know

2011-08-02T07:51:00.000-05:00

When our family is sick, it’s hardest on Goldilocks. No, he doesn’t catch the worst case of the bug. Quite the opposite. That’s why it’s so hard on him. He doesn’t understand that we are sick and have absolutely no desire to go to the store, beach, or the big library in the next town down the road. When I’m sick, 20 minutes in the car so he can spend 5 minutes in the fancy library is not tops on my list. The last few days our family has been sick. It seems to be an allergy based cold. It starts with allergy symptoms then drains the life out of you one drop at a time. There have been many sneezes, coughs, headaches, and sore throats. Everyone just wants to be left alone. Everyone except Goldilocks! He, on the other hand, has spent three days searching for the cruise director. He wants someone to entertain him every minute of the day. Well, last night I had had enough. I told him he had “no right to be so nasty go to your room and calm down.”
I was not ready for his reply: “I have to be nasty, God said so. You can call him to check, his number is 55-0795!”

EAA AirVenture Oshkosh

2011-07-28T08:56:00.000-05:00

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

2011-07-27T17:55:00.000-05:00

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.

Mumble, Mumble

2011-07-27T16:20:00.001-05:00

Kelly at Unplanned Trip to Holland posted about her son's mumbling. GL doesn't do that exactly, but he will often come into the room mumbling, walk up to me like he wants to tell me something, and continue mumbling just softly enough that I can't quite make out the words. If I ask him what he said or what he wants, he says, "Never mind," or "I was talking to myself!" (In a tone that suggests, "How dare you interrupt me!") If I don't ask what he's saying, he'll continue mumbling until I ask.

The few times I have been able to pick out some of the words, he was asking for something. He apparently thought if I didn't hear the question, I couldn't say no. He seems to do this a lot when he's asking for something he's not sure he can have. I'd be happy to let him have many of the things he asks for but, since his requests are all over the map, I don't dare say yes without hearing the question. He thinks that's not playing fair.

2011-07-25T17:40:00.000-05:00

Dr. Know-it-all

Boy, Am I Tired!

2011-07-21T23:03:00.000-05:00

We spent the day trying to trigger a seizure. GL was hooked up to a portable EEG machine. We let him watch as many videos as he wanted on an old-style (pre-digital, 30 Hz, CRT) TV screen. He rode shotgun for an hour drive on the freeway. We spent nearly three hours at Chuck E. Cheese. We lit fireworks leftover from Independence Day. (The small, legal stuff.) As far as we could tell, these things just made him tired, although he did throw up (only a little) on the way home from Chuck E. Cheese. He said he had a good time. He was actually quite pleasant all day, which is unusual for a day he gets to do any, let alone all, of these things. I suspect we'll pay for it tomorrow.

Seize Today!

2011-07-21T09:02:00.000-05:00

We've adjusted GL's dosage, and the symptoms he was having seem to have disappeared. His neurologist wants to completely rule out any seizure activity. Since nothing showed up on the two-hour in-office EEG, today he's having a 24-hour at-home EEG. We're waiting for the technician to show up, but apparently the device fits in a fanny pack, and he can go about his usual activities. In fact, anything that he usually does that could trigger a seizure we're encouraged to do. We're praying that if he has had any seizures or seizure-like activity, the doctor will see it.

2011-07-19T08:43:00.000-05:00

"Invent a wise saying and live forever!" - Anonymous

2011-07-18T14:32:00.003-05:00

GL was somehow under the impression BB was coming home today. Ever since I told him he's not, he's been banging on the walls and shouting, "I want my brother!"

Funny thing is, when his brother is here, all they do is fight!

Peace

2011-07-17T23:56:00.000-05:00

BB has camp this week. Not his brother's Special Needs camp that he will also be attending, but his own, nippical, ordinary Bible Camp. It seems odd that we're sending him to a Baptist camp, since we haven't been Baptists in years, but if our denomination has something similar, I haven't heard about it. MB took him to camp. They left yesterday morning, planning to visit family friend Mrs. C, who lives in the area, for the weekend, then MB will drop BB off at camp and return home Monday.

GL is much calmer and quieter without his brother around. We've said several times it would take much less than half the effort to raise one of these boys without the other, and it wouldn't matter which one. After this weekend, I'm inclined to say if we had only one, GL would be the easier. Things have stabilized; his meds are keeping him calm without making him dopey, but he's also much more pleasant without BB setting him off all the time.

I had big plans for the weekend. I knew as long as GL had DVDs, PBJ, and Mac & Cheese, he would be content and not require much attention. I'm a bit like him. Social interaction seems to take more effort than it does for other people, and we don't get as much out of it. Twice the effort for half the pleasure. And I enjoy my own company. I pity anyone who doesn't. Even in a crowd, you can never get completely away from yourself, so why not make friends? I know some people who are so dependent on their acquaintances, so shaped by them, that I suspect when they are alone, they cease to exist.

With no one to interfere, GL and I can enjoy sharing a space without needing to share an activity. Being alone with him is almost as good as being alone, and that's high praise in my book. I had a long accumulation of to-do lists full of items I haven't yet got to-do. What did I accomplish? I took a shower. Actually, two, one Saturday, one Sunday. I loaded and ran the dishwasher. Twice. Oh, and I caught up on my blogs. It took all weekend, but Google Reader now shows No Unread Items! They had been piling up for a while, partly because things have been a little busy around here, and partly because I have a habit of subscribing to more blogs than I can possibly read. While I was at it, I thinned my subscriptions. I started with the blogs with the most unread posts. If one to two months' backlog didn't contain anything I'd miss, out it went. I am now down to 92 subscriptions. I can't remember the last time I was below a hundred, and at times, it's been considerably more than that. Of course, in catching up on my blogs, I inevitably found posts in which they linked other blogs, and I had to resist the temptation to subscribe to those. I didn't add any new blogs! OK, maybe one or two. Now maybe I'll have time to post more to my blog, and fill in some of the many happenings over the last couple of months.

About 5 p.m. today, when it became clear that I really was going to make it to the end of my backlog, I noticed GL wandering around, looking like he wanted something. I had spent most the weekend ignoring him. He didn't mind, but maybe he would like a little father-son time. I tried to think of something we could do together, something that he would enjoy and I wouldn't mind doing. I know how much he likes Chutes and Ladders, so I asked, "Would you like to play a game?"

"Yes." he answered, "Clue Finders." So for the next hour and a half, he played a computer game, and I wandered around looking for something to do while I waited to get back on the computer and finish my blogs.

2011-07-16T17:01:00.002-05:00

Up to around age 10 or so, GL would lose all ability to speak or respond to speech during a meltdown. We found that he could, however, respond to sign. If I gave verbal instructions, he couldn't process them, but by signing, I could get him to a calming environment (usually the bathtub.) We set about learning ASL as a family. An ASL interpreter in our church gave us lessons. We later moved away and haven't found another teacher and, while it is still difficult, he can now process speech to some extent during a meltdown. (He can also speak, usually yelling inappropriate things.) But I mention this because it was helpful to us at the time. Now when he gets annoyed, but before he gets to angry shouting, he will sign "No!" or "Sit Down!" repeatedly at the person he's frustrated with.

2011-07-16T12:47:00.002-05:00

When GL is upset, he tends to yell insults at random strangers. We're working on it. When it happens, we remind him to use "appropriate words". When nothing but a bad word will do, we have taught him to "swear" using totally non-offensive interjections that we tell him are "bad words". Among his favorites: "bugs" "mud" and "dirt". As long as we act appropriately shocked, they seem to serve the purpose.

Looks like someone else has a similar problem

2011-07-15T20:53:00.000-05:00

It looks like someone else has a similar problem to the one I had with

The Universal Amalgamated Journal Sentinel Tribune Post Dispatch News-Free Press Sun Chronicle Daily Planet Democrat Observer:

Life as the mother of 4: Globe Update

What problem, you ask? This one.

2011-07-15T19:59:00.001-05:00

GL used to collect papers. Any paper that was not nailed down was his. Any paper that he could tear off or pry up wasn't nailed down. He would carry his papers around for a few days, then stuff them in his dresser and throw a fit if anyone tried to throw them out or reclaim them, shouting that we were taking or throwing away all his possessions. When he was done with a paper, he would throw it away. Sometimes he would claim a paper from my desk and walk directly to the trash with it. After all, it was his. Made it rather difficult to pay the bills.

Sometimes you just have to laugh

2011-07-14T17:21:00.002-05:00

Mama Bear was among those cut yesterday. She took it well. We had anticipated it, and she had been talking about looking for another job already. Not so for most of the people who lost their jobs. The idea of layoffs caught them by surprise, and they were even more surprised at who was let go. It did not go by seniority. Some people who had been there for over thirty years heard for the first time that there would be cutbacks and were out of work the same day. So far, my parents still have their jobs. We are waiting to hear whether they will be re-assigned.

Earlier this week, we took the car in for emissions testing, required here to renew the plates, which expire next month. They used to test by sticking a probe up the tailpipe, stepping on the gas, and measuring the exhaust. It was every bit as fun as it sounds. A few years ago, they switched to a system where they plug their computer into the car's computer, and the computer tells them you failed. Then you take the car to your mechanic, who plugs it into his computer to find out what the problem is. Sometimes, he can just reset your computer, and it will pass. Other times, it takes expensive repairs. Even if all he does is reset the computer, there is a minimum $100 charge for connecting your car to the the computer, in addition to the cost of any repairs. It's all a scheme to try to get fewer people to drive cars.

As long as we have owned this car, the Check Engine light has been on most the time. It runs fine, the computer just isn't happy. We've taken it in for repairs, and every time they corrected the problem the computer was complaining about, the light went out, but came back on within a week. It also randomly goes out for a few days and comes back on. Whenever we were due for emissions testing, we waited for the light to go out, then hurried down to the testing station. It usually passed. This time, the light went out about two months before we were due for testing, and stayed out. When we took the car in for testing, they had a new rule: if the Check Engine light doesn't come on when they turn the key, you automatically fail. If the light comes on and stays on you fail. If the computer is having a bad day, you fail. In any case, you have to pay $100 to hook it up to the computer, spin the wheel, and see what you've won. Let's see, Bob, what's it going to cost me to register my car this year?

We've owned this car for ten years, and it wasn't new when we bought it. It has nearly 300,000 miles on it. It has run very well for us, and we were hoping to get one more year out of it, because we really can't afford to replace it just now. So we'd made an appointment to drop our car off for repairs the day Mama Bear lost her job. We dropped it off anyway, because you need a car to look for work at least as much as you need one to get to work. There is no public transportation in this town. (That's a good thing, by the way. Why is a story for another day.) The Check Engine light was out because...

the bulb had burnt out. The computer also said we had a bad catalytic converter (this car has two of them, at $700 each) but after a reset, all the codes cleared, and we passed, all for the low, low price of $181, not counting the $75 registration fee. That's one expensive light bulb.

So Mama Bear got a ride into town to pick up the car. She took GL, because he has been begging and whining for an adventure. That means riding in the car and getting something to eat. Since she was going into town anyway, gas wasn't a problem, but teenage boys are expensive to feed at fast food restaurants, and whatever you offer him, he tries to negotiate up. She managed to talk him down to a visit to the big city library, which he's been asking for lately because they have several times the DVD selection of our local library. She just needed to stop at a couple of stores first. When they came out of the first store, the car wouldn't start. She called AAA. They had her describe the symptoms and put her cell phone in various places while trying to start it. Diagnosis: dead battery. It had a full and productive life, may it rest in peace. (Or be recycled into an equally reliable battery at an affordable price.)

They sent out a truck to give her a jump start, but estimated a 45 minute wait. In a car with a dead battery. In the middle of an asphalt parking lot. On a warm, sunny day in the middle of July. With GL already sputtering, "But-but-but, we didn't go to the library yet!" She called me, but I couldn't do anything because she had the car. I called around, but couldn't find her a ride. So they waited.

In the mean time, I called around to find out who had the battery we needed in stock for a reasonable price. That turned out to be Sears, at $64.98 for their bargain battery. When AAA showed up, they got the car started right away, then offered to sell her a Super Duper Battery for $125. When she politely declined, the man said, "But this battery comes with a six-year guarantee! If it fails in six years, we'll bring you a new battery for free!" Um, we weren't planning on keeping the car that long.

Waiting for the Call

2011-07-13T14:19:00.000-05:00

30 out of 170 employees at Mama Bear's work will be losing their jobs today. We're waiting for the call. If it doesn't come today, she will still have a job, but of those that remain, 9 more will be re-assigned, most likely with a pay cut, and possibly made part-time, and so lose their benefits.

As long-time readers know, when my hours were cut, she took a part-time job to make ends meet. My job eventually disappeared entirely, while hers grew to full-time. I haven't been employed in the last three years. I have been GL's full-time caregiver since then, and home schooled both boys.

We'd appreciate any prayers, best wishes, or good thoughts sent out for us.

2011-07-11T16:07:00.000-05:00

BB: GL, don't stick a light saber up my nose!

And in this corner... Voltaren!

2011-07-11T15:59:00.000-05:00

So many big things have been happening that I haven't had enough time to write about them, so I try to post the occasional little thing when I get the chance. I woke up one morning with a sore left wrist. I'm not sure why, maybe I rolled over on it in my sleep. I figured it would feel better in a day or two. It didn't. In addition to the continuous dull pain, I started feeling a sharp pain whenever I turned that hand palm up. Turning a key was especially painful. I never realized how many times a day I unlock a door with my left hand, usually because I'm carrying something with my right. Bending my wrist toward the pinky side also produced a sharp pain. That sounds like an easy enough movement to avoid, but lifting anything heavier than a coffee cup apparently causes my wrist to droop enough to that side to hurt. This was all inconvenient, but I figured I could live with it, and it wouldn't last long.

After two weeks of it not getting any better, I decided to see my doctor. I said, "Doc, my wrist hurts when I bend it this way." She said, "So don't bend it that way." She did take X-rays to rule out arthritis or fracture. (Maybe a stress fracture? or an old fracture that didn't heal properly? But I've never had a fracture.) So that leaves tendonitis. She gave me a brace to remind me not to bend it that way. I already had the pain to remind me, but the brace reminds me before I bend it far enough that it hurts. Presumably, that reminder also prevents me from doing further damage. I'm supposed to call her if it's not better in two weeks. She gave me a prescription for Voltaren Gel, which sounds like the name of a comic book super-villain. Or possibly a pro wrestler. Or as Dave Barry would say, "That would make a great name for a rock band."

Summertime

2011-07-06T09:20:00.000-05:00

Nine o'clock in the morning, and it's already hotter than the predicted high for today. Accuweather, indeed!

Parade

2011-07-04T17:29:00.002-05:00

Our small town celebrates Independence Day with a parade of just the right size. It's big enough that some people come from larger towns and cities for that je ne sais quois you just don't get in a big city parade, but small enough that it starts at 9:30 a.m. and we are back home by 11. We and apparently quite a few other people complete the celebration with lunch and a nap. If you want fireworks, you'll have to drive to another town or buy your own.

This marks my seventh consecutive year of photographing the parade, but I didn't take nearly as many pictures as in years past, largely because the lineup doesn't change all that much from year to year. It starts with a kids parade that any kid can be in just by showing up, bicycle optional. Most of the participants are younger kids who decorate their bicycles, tricycles, and wagons in red, white and blue with help from their parents, who walk alongside or behind them.

Then a color guard from the VFW, followed by all the fire trucks and ambulances from the local fire department and those of several nearby towns, all blowing their sirens continuously, with occasional interjections from their air horns. GL covered his ears, but he handled the noise pretty well. Maybe next year I'll focus on his reactions to the parade.

It's not only the blend that's consistent from year to year, it's largely a repetition of the same entries. Each is assigned a place in the lineup, which does vary but seems somewhat random. Perhaps it's based on the order in which their entry blanks were received and processed. Scattered throughout are Jeeps, convertibles, vans, and busses carrying veterans of every war the U.S. has fought from WWII to the present. This is the kind of town where people still stand up and clap and cheer when the veterans go by. A few shout, "Thank you!"

There is an assortment of brass bands. Pretty much every business in town that owns at least one truck enters it in the parade. So do many businesses from surrounding towns. Every church and club and organization in town has some kind of entry. Every farm family enters at least one tractor, preferably the oldest one they can get running. I didn't take many tractor pictures this year. As with the fire trucks, I already had pictures of most, if not all.

Some entries leave me scratching my head:

I'm not sure, but I think it's (front row, left to right) a Civil War soldier, Betsy Ross, a Revolutionary War soldier, (middle row, left to right) Mr. T, the Statue of Liberty, a present-day American soldier, (back row, left to right) Mr. Spock, Captain Kirk, and Dr. McCoy. I didn't get it in the picture, but I think they had a banner that said, "Let freedom ring yesterday, today, and forever," and the name of the sponsoring church, which I'm almost positive was Methodist. So I guess they have a methodism to their madness.

Everyone with an old car, or just one they want to show off, enters it in the parade.

I'm seeing a subtle message here.

The two man rock band made its annual appearance. For the second year in a row, they got in near the beginning, then zipped down the back streets and to the start of the parade route and made a second appearance near the end. I think I heard that's okay as long as you fill out two entry blanks. I don't mind, I enjoy their music. They play mostly '70s with the occasional new song from the 1980's. I guess that counts as an Oldies band these days. When I hear the word "Oldies" I still think of '50s and '60s music.

Our State Representative was in the parade, as always. Did I mention that when Mama Bear had a question about something in his constituent newsletter, she emailed him, and he sent a personal reply the same day?

Various sports / cheer / dance teams did their routines or just waved at people.

One new entry this year was a high wheeler, or penny-farthing bicycle. When I say every business had a truck in the parade, I do mean every business.

This being a small-town parade, while it started out evenly spaced, it was soon bunched up, so there were groups of entries stuck in stop-and-go traffic, waiting for the entries in front of them to move, interspersed with gaps, some long enough that we thought the parade was over, but when we stood up to gather our things, we saw more coming. When the parade really was over, we weren't sure at first. There was a gap, followed by a police car (he was re-opening the street) followed by a long line of cars. But mixed in the line were several parade entries trying to get back home. We had our annual traffic jam, which sorted itself out in ten or fifteen minutes, and everyone went home for lunch and a nap.

Ouch!

2011-07-03T21:42:00.000-05:00

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

2011-06-20T15:10:00.001-05:00

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.

2011-06-12T19:16:00.000-05:00

GL (annoyed with BB): "Stop acting like yourself!"

Hodgepodge

2011-06-12T19:14:00.000-05:00

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!

2011-05-19T20:27:00.000-05:00

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.

IEP Meeting

2011-05-15T22:34:00.000-05:00

I haven't blogged much lately, not for a lack of things to blog about, but for a lack of time. Among other things, we've been preparing to enroll GL in high school in September. This is not only a transition from middle school to high school, but also from home school, which we've done from the beginning, to public school. You know how difficult transitions can be for kids on the spectrum, and how hard it can be to figure out what services they need and how to get them. So far, everyone seems to be going out of their way to help him (and us) so I am cautiously optimistic. But I know that not everything needed or recommended always ends up in a student's IEP, and have heard plenty of stories about schools writing great IEPs and then ignoring them.

His IEP meeting is Tuesday. We'd appreciate any prayers, best wishes, and good thoughts you can send our way.

May the 4th be with you.

2011-05-04T12:25:00.000-05:00

Pills

2011-04-25T06:04:00.000-05:00

GL has to take medication four times a day. Anyone who says medication is never the answer for behavior should try living with him unmedicated. He learned to swallow pills at age 7, and has never had a problem with them since. Even when the pharmacy filled his prescription with the same number of milligrams, but more pills, he swallowed handfuls of pills with no difficulty. Until recently. He had a cold a month or two ago with coughing and choking. He happened to cough or choke on mucous more than once while swallowing his pills. The cold is long gone, but now he is convinced that pills will make him cough, choke, or gag. First he started coughing while the pills are still in the front of his mouth, before he attempted to swallow, spitting them across the room or into the cup of water. Now he's started coughing and gagging before they're even in his mouth, sometimes as soon as I open the bottle. Heavy sigh.

Alleluia! Christ is Risen!

2011-04-24T07:12:00.000-05:00

Happy Good Friday

2011-04-21T19:35:00.000-05:00

Happy Good Friday? Well, yes. Every Good Friday, one of my favorite bloggers reposts this post from her archives, and for the third year in a row, I'm linking it. She says it so well, there's really nothing to add.

A Must-Read Blog!

2011-04-17T21:29:00.000-05:00

I just found a great new blog. Actually, it found me. Brian left a comment on my last post, and, wondering who Brian was, I immediately clicked his profile and took a look at his blog, Both Sides of the Coin. (If you want me to read your blog, nothing gets my attention like leaving a comment on my blog.)

As you know, two of the things I blog about most are homeschooling and autism. These are the topics of many of the blogs I read, as well. As you might imagine, most of them are written by moms. Nothing wrong with that, I really enjoy their humor and insight, but when I find an autism or homeschooling blog by a dad, it really gets my attention. (If you run across any, send me a link. I've only seen a handful.)

It's not just a blog by an autism dad, it's a team blog by the parents of a boy with autism, with a he says, she says format. It's well written, humorous, and insightful. Drop everything and read it. And the post A how-to guide for dealing with autism dads, from Brian's old blog, before he and Christy combined their blogs to write Both Sides of the Coin.

Palm Sunday: It's only fun until someone loses an eye!

2011-04-17T13:47:00.000-05:00

O.K., no one lost an eye at my church this morning, but I have been poked in the eye when some short people related to me got over-enthusiastic with their palm fronds. And I'm sure it happened again today to someone, somewhere. People say Christmas is for children, but it's got nothing on Palm Sunday for pint-size congregant participation. With fronds like these, who needs enemies?

Palm Sunday is a strange holiday. Even staid congregations that don't usually leave their pews for any other reason have processions. People who would normally never raise their hands in church are waving tree branches. And think about it: palms--which would never survive the winters here--before the first hint of buds on local trees.

But the strangest part is this: we praise Jesus by reenacting a scene in which we play the crowd that turned on Him and demanded his crucifixion. I still remember telling my mother about the morning's Sunday school lesson on our way home from church, Palm Sunday, 1975. How Jesus rode into Jerusalem, and the people recognized Him as the Messiah, and cheered as he went by, saying, "Hosanna to the Son of David! Blessed is he who comes in the name of the Lord! Hosanna in the highest!" We relished the story together, but then she pointed out, "Those were the same people shouting, 'Crucify Him!' a week later."

Oh. The teacher hadn't mentioned that. It worried me a bit that people could be so fickle, so treacherous. But I thought I could never do that. Over the years, I noticed that the two stories were kept separate in most of the churches I attended. The connection might be mentioned in passing, but the stories were told on separate occasions. I still waved my palm branches, but I felt vaguely guilty doing so. Should we imitate these people who didn't stay true to Him?

Fast forward to my first Palm Sunday at an Episcopal church. We had the procession, we waved our palm branches, I got poked in the eye, all in the usual way. But when we got to the Gospel reading, instead of the rector reading the entire passage, there were parts for him and parts for the people. When I heard my own voice crying out with the whole congregation, "Crucify Him! Crucify Him!" an old lesson hit home in a powerful way. My heart is fickle, even treacherous. The choices I have made (and continue to make) sent Him to Calvary. It is only when I recognize my voice in the crowd saying, "Crucify Him!" that I am truly able to cry out, "Hosanna," literally, "Save us!" I was reluctant to identify with the hypocritical crowd, fearing it would make me a hypocrite. What I'd failed to see was that identifying with the crowd only revealed the hypocrisy that was already there. Which of us has not, by our words or our silence, by our actions or our failure to act, failed and failed again to live up to the faith we profess?

The most persistent objection of unbelievers is that "there are hypocrites in the church." Now we all know that there are those in every church who are not yet truly converted, those who pretend to be holy to impress their friends, families, or neighbors. If we forget, there are Christ's own words to remind us: "Not everyone who says to me, 'Lord, Lord,' will enter the kingdom of heaven." But the reason this accusation stings is that no one is so aware of his own sin as a true believer. We are commanded to confront and eradicate it, even at the cost of a hand or an eye. You can fool your neighbors, you can fool your friends, you can fool your pastor, and, most frightening, you can even fool yourself, but you can't fool God. What happened when Ananias and Sapphira lied to the Holy Spirit and were struck dead? Great fear came upon the whole church, and more than ever believers were added to the Lord.

Outsiders who complain of the hypocrites in the church seem to imply that they are above that sort of thing, perhaps not so holy as the holiest believers, but wholly without pretense. Hogwash! Why is the church so full of hypocrites? Because the world is so full of hypocrites. Every problem in the church is a direct result of the fact that we keep letting those damned sinners in, but the reason the church exists is to bring in damned sinners! Some of them will continue to deceive themselves, and those who will become holy will become holy over time. We can't be sure who's who. If we try to uproot the weeds, we will uproot some of the wheat with them. We are commanded to let both grow together until the harvest.

So I admit it, I'm a hypocrite. But if I stayed away from church, I would still be a hypocrite. The church has my only hope of a cure. Seeing hypocrites in the church and saying the church causes hypocrisy is like seeing cancer patients in the hospital and saying the hospital causes cancer. At times, I'm tempted to rap with Steve Taylor:

Can't understand those Christians, so
You type us all in stereo:
"They're hypocrites! They're such a bore!"
Well, come on in! There's room for one more!

But when I look at my own heart, I have to say what Edmund said to Eustace after he'd been un-dragoned: "You were only an ass, but I was a traitor."

Question of the Week returns

2011-04-16T09:53:00.001-05:00

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.

2011-04-10T13:10:00.000-05:00

First warm day of spring. On the way home from church, I rolled down the windows and cranked up some John Mellencamp.

Now That's a Guarantee You Can Take to the Bank!

2011-04-08T16:18:00.000-05:00

Cadet Bear's First Orientation Flight

2011-04-03T19:10:00.000-05:00

2011-04-03T19:07:00.000-05:00

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2011-04-03T18:49:00.002-05:00

2011-04-03T18:47:00.000-05:00

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