Continuing the Conversation Re: Perseveration

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

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

Perseveration seems to have two components:

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

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

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

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

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

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

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

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

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

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

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

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

Waking Up is Hard to Do

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

GL must be having a good day today...

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

Jewel has a new Fan!

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!

 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.

Summertime

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

It's a Beautiful Day in the Neighborhood!

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

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

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

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

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

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

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

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

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

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

Frrooggyy!!!

GL has been checking out a reasonable number of DVDs on each trip to the library lately. After he selects his DVDs, if he thinks we don't have enough items waiting for us at the checkout, or sometimes even if he thinks we do, he goes back and selects some books. He prefers books that come in a series. He finds a series on the shelf and checks out the whole thing, regardless of how long it would take him to finish each title. One of his favorite series is the Froggy books by Jonathan London. I think this has something to do with the fact that at some point in every story, Froggy forgets his pants, and someone yells, "Frrooggyy!!!"

So for the next week or two, we'll be hearing a lot about missing pants and random shouts of "Frrooggyy!!!" It could be worse. He could be shouting about Farmer's Nipples.

GL only checked out 4 DVDs today!

Sometimes he surprises me

GL likes to check out DVDs from the library. Stacks and stacks of DVDs. So many that even the most patient and understanding librarians, who accommodate him in every possible way, worry about him leaving enough DVDs for other kids to check out. He tends to check out the same titles over and over. Just going to the library and checking one out makes it new again. The thing is, the next day, everything he checked out the day before is old, and he needs new DVDs. Doesn't matter that he hasn't watched some of them. They're old, and he needs new.

I used to fight him on this, figuring that, since he was being unreasonable, nothing would satisfy him anyway. But I found that, once he's been to the library, he's content with his DVDs the rest of the day. It doesn't matter if we go first thing in the morning, those DVDs are still new until tomorrow. It doesn't matter if we go right before bedtime, those DVDs will be old as soon as he gets up in the morning. Like manna. Once I caught on, I decided, "Why not take him to the library every day? He'll be content (with his DVDs, at any rate) for the rest of the day, it's only two blocks away, and walking to the library is the only thing resembling exercise I can get him to do."

It was frustrating that he still insisted on checking out so many DVDs at a time, but at least he doesn't keep them out long. Our routine goes like this: We walk into the library, he throws his bag of DVDs on the return desk, yells, "Do we have anything in? Go check, and I'll look for new DVDs!" and runs, despite repeated reminders to walk, back to the children's DVDs. He snatches three or four of them, runs to the checkout desk, and yells, "Do we have anything in?" If we do, well and good. He might even wait in line until it is our turn to check out. If not, he yells, "Oh, man! That's terrible!" and runs back to the children's DVDs to select more titles. He usually comes back with as many as he can carry, and on more than one occasion, made multiple trips with as many as he could carry. I had to talk him down. And try to avoid a meltdown in the library.

Even if we have items waiting for us at the front desk, when it's our turn to check out, he keeps trying to snatch things from the librarian's hands before she can scan them. Once everything is scanned, he usually decides he needs more DVDs, or maybe some books, and runs back to get them. The long and short of it is that we never leave the library with fewer than 10 items, most of them DVDs, even though we visit every day.

Today, he followed his usual routine up to the point where we were checking out and he asked if we had anything in. There was a book for me. We checked out three DVDs and the book, he put them in a bag, and headed for the door! With only 3 DVDs! On the way home, I realized that he'd only checked out 3 DVDs the day before, too. (And about 12 books, but that's beside the point. Today he checked out 3 DVDs and nothing else!) I seem to remember a reasonable number of DVDs on Monday as well. (I forget how many other items.) So after several months of going to the library every day it's open, is he finally getting the idea that he doesn't have to stock up for an entire month? We'll see what happens tomorrow.

Whose Job is it, Anyway?

I love it when blogging turns into a conversation between people with similar goals, but varied experience. I've been discussing curriculum planning both here and in various online forums. I've had a number of helpful answers to various questions, usually about what I expected: I was looking for a way to teach x, and people replied that a, b, or c worked for them. Rebecca Miller surprised me with a blog post of her own in response to one of my more general questions,  What is not working in our homeschooling?

While her post was about her family's experience, it led me to consider some related questions we're dealing with. Every year as I prepare to select the materials we will use, I look over the past year and ask, "What worked? What didn't? and Where do we go from here?" The "What worked?" is obvious; let's build on our successes. The "What didn't?" can mean a variety of things. Maybe a book just didn't live up to its reviews. Maybe it just wasn't a good fit for my child's learning style. Maybe it was just too much to try to cram into our already overstuffed schedule. But there is always the possibility that, much as I'd like to, I can't blame the book. Sometimes my kid didn't put in the effort he should have, or I didn't.

That last one has been a struggle lately. Since my older son has autism, if he isn't putting in the effort, it's up to me to figure out a way to get him to do the work. But my younger son is twelve now, and needs to start learning how to take responsibility for his own work. Yes, it's a gradual process, but he usually doesn't see a need to focus because he has no idea what should be expected of a sixth grader. If it doesn't come naturally, if he has to work at it, he thinks it's too hard, and doesn't see the point of trying.

He has a vague idea that he is ahead in some subjects and behind in others (true), but no clear idea of where he should be in any given subject. We talked about it today, and I asked if he would like a chart of what needs to be done at each grade level between where he is and high school graduation. He said he would. I typed one up this afternoon. It's only a rough outline, listing the subjects he needs to study, and which books we have used / are using / are planning to use, and is subject to revision: As I see his effort and progress, I get a clearer picture of his abilities and what I can reasonably expect of him. I plan to go over it with him tomorrow. We can check off what he's already done, and I hope it will give him a more accurate picture of what he still needs to do. Then we can look at both the knowledge he needs to acquire and the skills he needs to develop, and strategize what to do when.

But I also need to observe him carefully and evaluate when to coax, support, and lead him along and when to let him stand or fall on his own. The ultimate goal is for him to take complete responsibility for his education, labor, and vocation, but what is the best method to foster this independence, and what does it look like at any given moment? How can I best model the ethic I'm trying to teach? As he learns to work more independently, what should I be doing while he's working? Folding laundry?  Reading a worthwhile book? Building model rockets? (educational, but he'd feel I was having all the fun!) Researching curriculum? Randomly browsing the Internet?

And I, too, had found something I could do a few hours a week that brought in a little money to help stretch the family budget, and even cover the costs of some CAP activities. It was only a few hours a week, but it did cut into school time. That opportunity ended, so I'm looking for a replacement. But how to fit it in without school suffering? I'd like BB to start earning some money to pay for his activities, too, and more than I could pay him, but how best to fit it in?

Most teens like to sleep late. Conventional wisdom says they should go to bed earlier. Our boys go to bed early almost every night, and they still sleep late. I don't think many teens or preteens are getting all the sleep they need, but how much is too much? Our school day runs well into the evening. I could get them up earlier, but would they finish earlier, or just be less productive due to a lack of sleep? What is the ideal amount of sleep for these boys, and at what time? How can we find time for the physical exercise they and I need? And what subjects do I cut back on, and how much, when we need to focus in another area?

Don't be discouraged by my having more questions than answers. We are making good progress in many areas. It's balance that's difficult. And I welcome your stories of what worked well for you in a particular area, or how you keep up in one thing without falling behind somewhere else. Because with so many things that need doing, it's hard to know how much of what to do when.

Goldilocks Visits the Dentist

I took GL to the dentist yesterday. Today I'm recovering. Actually, the dental checkup itself wasn't as bad as I'd feared. Our dentist is the gentlest, kindest, most engaging man I’ve ever met. He reminds me of Mr. Rogers. Goldilocks absolutely loves him. When he knows he has an appointment, he says, “I get to visit Dr. N., my dentist? Hooray!” and runs to the car.

But it wasn’t always this way. At first, Dr. N. was not sure he could handle a patient with autism. He referred him to a “pediatric/special needs” dentist who he said would give him a sedative. He teaches at the state university dental school, but he didn’t feel comfortable prescribing a sedative, because he felt that was outside his area of expertise.

The “pediatric/special needs” dentist was horrible. She refused to give the sedative she had promised, and instead, put her knee on his chest and told Mama to hold his legs, all the while scolding him for being “naughty”. He was so terrified, she couldn’t even do a basic exam. Mama Bear promised Goldilocks he would never have to go see that mean lady again.

When we reported this to Dr. N., he was shocked, and said he would never refer anyone to her again. He also agreed to give Goldilocks a chance. He scheduled him for a slow time of day with his gentlest, most patient hygienist. At the end, he came in, introduced himself, shook hands, and sent GL home with a big bag of trinkets. With each visit, he did a little more of his usual exam, eventually working up to a cleaning, complete exam, and x-rays.

But Dr. N is retiring. For the last several months, he's been gradually turning his practice over to Dr. G. She's been seeing more and more of his patients, and he's been gradually reducing his hours. He's down to 1-2 days a week. And GL doesn't like change. So at the end of his last visit, we scheduled this visit on a day both dentists would be in. On the way to the dentist office, I told him that Dr. N had a friend, Dr G, who is also a dentist. She is very nice, and she works on my teeth. Would he like to meet her? He thought he would. Alerting him to upcoming changes is a delicate balance. His anxiety is increased by both too little notice and too much.

GL giggled during his cleaning. He said it tickled. But he held my left hand so tight, I had to switch to my right, because my wedding ring was cutting into my finger. Then he started moaning. The hygienist was worried, until we figured out that he was singing.  Occasionally he'd forget to keep his mouth open, so I'd say "Ahh" to remind him. So he started singing "Ahh-ah-ah-ah!" I said he sounded like Tarzan. He started beating on his chest. The hygienist laughed, and asked him if he liked swinging on vines. He laughed, and said he did.

After his cleaning, Dr. G came in to meet him. He wouldn't make eye contact, or even look in her direction, but he shook her hand and talked to her, which is a step. Then Dr. N came in and did the exam. He and GL joked about Tarzan. Dr. N keeps bird feeders outside his exam room windows. It gives patients something to look at, and helps them relax. GL looked at the birds and said, "Hey, birds! Here are some cookies!"  I explained that he was quoting Frog and Toad. Dr. N said, "That's one of my favorite books. My wife says I'm a little like Toad."

He shook our hands and left, and the hygienist came back to give GL a fluoride treatment. He handled it pretty well, despite being tired of having so many hands and tools in his mouth. At one point, he yelled, "Hey, birds!" Come get your fluoride treatment!"

All the way home, he kept asking if we could go to the library for DVDs. We did have to make one other stop first, but that boy cannot take yes for an answer! At the library, he followed his usual routine: As soon as he was in the door, he yelled, "Hey, librarian, do you have anything in for me?" Then he threw his returns on the counter and ran back to to the children's DVDs without waiting for an answer. Sigh. We're working on it. Really.

Last several visits, he's had a new problem. He grabs three or four DVDs and runs back to the circulation desk to see if he has anything in. If he does, he leaves me to check out, and goes back to grab a few more books or DVDs. If he doesn't, he yells at the librarian, and then runs back and grabs as many DVDs as he can carry. He'll keep running back and grabbing more if I don't stop him. It's not like he watches all the DVDs he checks out. Every day, he insists the discs he checked out the day before are old, (even if he hasn't watched them) and he needs new ones. Since we only live two blocks from the library, and walking to the library is the only way I can get him to exercise, we go every day it's open. Even though he checks out the same DVDs over and over, they are "new" each time, and he is satisfied for the rest of that day.

Even the most patient and understanding librarian, who doesn't mind scanning ten DVDs every day, even though she knows he doesn't watch them all, wants him to leave enough DVDs for others to check out. So I've been making him choose some, and put the rest back. This time, he started screaming at me. And the librarian. About how we were taking all his DVDs away. About how we would never let him go to the library, ever, ever again. We were done checking out, so I hustled him toward the door, while he screamed all the way. As we were going out, we met the head librarian coming in. She reminded GL to zip his coat, because it was cold outside. He yelled at her, too. Outside, he kept screaming at me. About how I took all his DVDs. (Never mind the two bags he was carrying.) About how I would never let him go back to the library. About how he needed to go back right now, and apologize to the librarians. He usually "apologizes" by screaming at people. Not today, Zurg! Once I got him across the highway, I walked away. He can cross the less busy intersections on his own. He chased me, but even chasing someone, he doesn't walk very fast. He continued screaming at the whole world, but it was easier to tolerate from ten yards away. I did watch for traffic when he crossed. There wasn't any. Once we got home, he asked me to put on a DVD, and eventually calmed down.

Keeping Warm

The whole family have colds. I don't usually feel too bad just sitting around, but as soon as I try to get up and do anything, I'm tired and out of breath. And this morning I woke up with a sinus headache that won't go away. I did manage to shovel the part of the walk I wasn't up to finishing yesterday. I even got GL to help a little. He's got more energy than anyone else, and wants to go, go, go! The forecast calls for snow tomorrow, followed by freezing rain, followed by more snow. The rest of the week looks like cold with occasional snow. Time to stay close to home and make chili.

Here's my recipe:

Gringo Chili
1 lb. ground turkey
1 medium onion (Dehydrated minced onion keeps longer, doesn't need chopping, and works just fine.)
2 T chili powder
2 cans (15 oz ea.) kidney beans, rinsed and drained
2 cans (10.75 oz ea.) tomato soup

Chop the onion to the desired size. Some people like big chunks. Others like it so finely minced, it almost dissolves. Brown the ground turkey along with the onion and chili powder in a soup pot. Why dirty an extra pan? Add the beans and tomato soup, plus one can of water. Bring to a boil, stirring occasionally. Continue heating until chili resumes boiling as soon as you stop stirring. Optional: garnish each serving with a handful of crushed Corn Chex. (The off-brand works just fine. Stir it in, and it gives a flavor like crumbled corn bread in your chili, but without the fat.) If you're a real wimp, cut the chili powder in half. It's best to let each person salt and pepper his or her portion to taste. I usually make a double batch, because that's what fits in my soup pot, and refrigerate the leftovers in individual portions in Smart Spin containers.

Coming Soon! and the Horrible Holidays

GL loves to go to the library and check out DVDs. He asks to go every day. Since it's only two blocks away, I usually take him. I don't trust him to cross the street by himself. I also don't trust him in the library by himself. Of course, he checks out his favorite movies over and over, but his favorite parts are the commercials and the bonus features. He'll frequently tell us about this or that movie that's "Coming too soon on video and DDD!"

The library was closed Christmas Eve, Christmas Day, and Sunday. As jillsmo says, Yeah. Good Times. Meltdowns every day. Mama Bear had Christmas Eve off. In exchange, she had to work Christmas Day. I don't remember much about what we did during each day, but it revolved around trying to calm GL. You know how some Catholics / Lutherans / Baptists / whatever only attend church on Easter Sunday and Christmas Eve?  Since GL's diagnosis,   I've become sort of a reverse Catholic. Those are the two times I don't go. He doesn't handle crowds well, and I'm not too keen on them, myself. Brother Bear had asked if he could be in the Christmas program this year, so Mama Bear agreed to take him.

We went to church as a family Christmas Day. Although it's one of the holiest days of the church year, our church and many others don't hold services on Christmas Day. Some get around it by having midnight Mass, so it's technically Christmas Day by the time it's over. But ours has it's Christmas Eve service at 5:00 p.m. so everyone can get their kids to bed on time. So one day a year, we are Lutheran. Actually, I was confirmed Lutheran a few years back, when I had to work every Sunday and they were the only church in town that had a service at a time I could attend. The pastor still recognized me when we walked in the door, remembered my name, where we live, and what kind of car we drive. It's a small town.

Mama Bear went to work that afternoon, and the rest of the day was quiet. Well, as quiet as it ever gets around here. I had a project I wanted to work on in the basement, but every time I went downstairs, the boys would fight. I don't remember why I couldn't bring BB down with me, but the basement is where we keep everything that GL might hurt or that might hurt him. We keep the door locked, because we don't trust him in the basement.

We had planned to go to church Sunday, but MB had worked an overnight, and was too tired, and I didn't feel up to taking GL to church by myself. So the boys continued to fight, and MB tried to sleep. We had a family gathering Sunday afternoon because that was the compromise worked out with the various in-laws and out-laws. We gave GL his extra med and headed to my parents' house. When we arrived, he immediately began yelling at Nana that he wanted to watch PBS Kids on her computer. Her computer was down. He started banging on the windows, saying he was going to break them. She took him for a walk outside, and he calmed down a bit. Whenever he started getting worked up, someone would take him for a walk, and he'd calm down for a while. We managed to visit for about two hours, including dinner. By then, he was yelling, pounding on windows, and trying to hit people, and there was no calming him. He needed to go home, but he didn't want to leave. He wouldn't go out to the car, he wouldn't put on his shoes, and he wouldn't let me put them on. I thought my brother, the firefighter, would have to carry him out, but at the last minute, he decided to walk out to the car in his sock feet. He raged all the way home, and didn't calm down until bedtime. He's been getting up between two and six most mornings lately, and waking people up for company. He was up at three a.m. one morning last week. He turned on the lights and started yelling at his brother to get up and play with him. This morning, he slept until 9:20. I let him.

Today we went to the library for DVDs. GL followed his usual routine. As he walked in the door, he shouted, "Hey, librarian, do I have anything in? You check, and I'll be in the DVD section, looking for DVDs!" He dropped his DVDs on the counter, and ran back to the kids' DVDs. As we were checking out, I commented that we survived three days without the library. The librarian smiled. She knows we're doing the best that we can. But she couldn't resist adding, "I had three days without the library, and I liked it just fine!"

GL answered, loudly as always, "On Christmas, I yelled at my grandmother, and I had to go home."

I hate holidays. They bring out the worst in people, especially GL, because they disrupt his routine. We have worked very hard to make our celebrations low-key, but they are still often more than he can handle. It's fine if other people want to take the day off, but why do we have to?

Help!

Parents all know the routine: allowing toddlers to "help" when all they are doing is making more work. Making bigger kids do chores, despite their whining, when it would be easier to just do it yourself, because they need to learn to work even when they don't feel like it. By age ten or so, most kids are capable of doing a simple chore or helping with a bigger one in a way that actually reduces your workload somewhat, even if they do complain about it.

Goldilocks has had trouble sleeping lately. Actually, he always has trouble sleeping. He takes medication to help him fall asleep at night, but he's still usually up around midnight. He usually goes to the couch, and sometimes goes back to sleep, but lately he wants to stay up, and he wants company. The other night, he was up at 3 a.m., screaming at his brother to get up and play with him. When he gets up in the night and can't or won't settle himself, Mama Bear usually gets up and tries to settle him. It's not fair, because she has to be up early for work, but she is a light sleeper. I may have trouble falling asleep, but once I'm out, it takes a lot to wake me. I keep telling her to get me up when he wakes her, so she can get some sleep, but she usually doesn't. It's a mom thing.

Monday night is a late night for us because of Civil Air Patrol, so I try to let Brother Bear sleep in Tuesday mornings. Otherwise we have two grumpy cubs. This morning Goldilocks was up at five, demanding attention. Mama woke me. I went and cuddled on the couch with him. He cuddled for a while, then went and played with his Leap Pad. He seemed content as long as I stayed in the room with him, so I dozed on the couch until six, when Mama had to get up and get ready for work. Then he started yelling for his brother.

We'd has two or three inches of snow overnight, so I decided to go out and shovel and take him with me, so he wouldn't wake his brother. He yelled and screamed the whole time, but he pushed the shovel up and down the middle of the sidewalk, scraping an irregular path. He didn't shovel the length or width of the sidewalk, or even clear all the snow from the strip he did shovel but, for the first time in nearly fourteen years, he shoveled snow from the sidewalk onto the lawn, instead of the other way around! When I came to the part he had shoveled, there was actually less snow! For the first time in his life, he did a chore in a way that actually saved me some work! His "help" actually helped!

Good to Know

Goldilocks' meltdowns have been increasing in frequency, intensity, and duration over the last couple months. Once St. Nicholas Day was over, he found other things to yell about. Or nothing in particular, just yelling angry nonsense. We are working with his doctor, adjusting his meds, trying to find a combination that keeps his behavior under control. I know some people are anti-medication, but when we've done every available therapy, and tracked down and accommodated every sensory and social issue we can, and he's still screaming, hitting people, pounding on the walls, tearing down pictures, and attempting to break windows for hours at a stretch, all for no discernible reason, and this happens four to five days a week, we turn to medication. Without it, someone would have been locked up a long time ago.

We missed church yesterday because of bad weather. It turned out not to be quite as bad as we were expecting, but the National Weather Service was still advising people to travel only in an emergency. We decided that going to church was not an emergency, but if the weather got worse, and we were stuck there or on the way home, we would have an emergency. Today he was not yelling; He was just being annoying. Asking repetitive questions. Making unreasonable demands. No matter what you offered him, he upped the ante. I decided to take him and run a few errands. He gets the go bug, especially when we can't or won't take him anywhere for a day or two. Sometimes just going someplace helps. So I took him. We even stopped for 7Up and doughnuts, which made this an official "adventure" in his book.

Later, Mama Bear had some errands, including a doctor appointment for the Sinus Infection That Will Not Die, so I was home with GL. He suddenly decided that he was finished with all his library DVDs, and I was going to take him to the library to get some more RIGHT NOW! I explained that I had to do a few other things first, including checking to see which things needed to be returned to the library and waiting for Mama Bear to come back with the car. He was back every five minutes, nagging. I was gathering the library materials when MB arrived. I apprised her of the situation. As GL and I headed out the door, Mama Bear said, "You're a better man than I am, Papa Bear." Thanks, Mama Bear. That's good to know.

The Countdown Continues

We give gifts on St. Nicholas Day, Dec. 6, instead of Christmas. Once that's over, the rest of Advent is much more peaceful. You can read the whole story of how we arrived at this plan here. So we've just got to make it through the weekend. About Dec. 1, Goldilocks was yelling at Mama Bear, convinced she was holding out on him:
"You're never going to let me have any presents!"
"You just have to wait for St. Nicholas Day."
"Christmas is already here, and you still have my presents! You stole them! I'm going to take you to court!"

She finally persuaded him that St. Nicholas Day was six days away. He's been much calmer, almost his ornery old self. This morning, he announced,
"St. Nicholas Day is six days away."
"No, it's only four days away."
"You told me it was six days away. You told me that five minutes ago!"

Sigh. He's always been a little vague on time concepts, but that one is new. Anything that happened in the past was always "yesterday". Anything we ask him to stop momentarily he can never do, "never, ever again". Anything happening in the future, whether goof or bad, whether five minutes or ten years from now, is a source of great anxiety. He can't relax until all predictions, plans, and expectations are filled. And he lives almost entirely in the future. He doesn't care what's happening now, he wants to know what's happening next, and after that, even though knowing only increases his anxiety.

When he was seven, and his cousin was four, she announced to Nana, "I know what's wrong with GL."
"What?" Nana asked.
"His calm down button is broken."
Not one of the many professionals he has seen has offered a better description.

Bah! Humbug!

I hate holidays. They bring out the worst in people. GL has been screaming and pounding on the walls for hours at a stretch for two days now, yelling, "I want my Christmas presents now, now, now,  now NOOOOOWW!!!"

Once in a while, he'll throw in something memorable, like, "Christmas is never coming! I waited for half an hour!"

And we can't even laugh, because that makes him worse.

Unlikely Adventures

Thursday morning was unseasonably warm. So much so that I found myself wading in Lake Michigan, even though the signs along the shore said not to. The signs were right. Soon I found myself swimming in Lake Michigan. The undertow had swept me off my feet and dragged me into deep water. I wondered whether this were the end, or if the current might change direction around the next point, or at least weaken enough that I could swim back to shore. Just then the bow of a submarine lifted me from the water. The entire bow dome was painted in an improbable red and white pattern.  First I thought, "This had better be an American sub." but then, "If this is an American sub, shouldn't it be somewhere else?" At least it wasn't pink like the one in Operation Petticoat. A JG appeared, and began walking toward me along the slippery metal surface, pushing a life raft, and cussing me out as only a submariner can.

Just then, the light came on. It was 6:30, time to get up and drive Mama Bear to work, so I would have the car when it came time to drive GL to therapy. I had been up past midnight searching eBay for a portable DVD player with LCD screen to replace GL's. I did eventually find one with a "buy it now" price of $30, with free shipping. It was a scratch and dent model, but guaranteed to work. The seller has 55,848 feedback ratings, 99.2% positive. Mama Bear pinched the budget until it screamed, and I placed the order Saturday. We'll see how it works out. Meanwhile, we have the loan of a player, which helps GL's peace of mind, and thus the peace of the entire household. Thanks be to God.

Some people seem to find a message from the Lord in every dream. Even in the Bible, such dreams were usually reserved for patriarchs, prophets, or apostles, and might be separated by generations or even centuries. If the Supreme Being is trying to send me a communiqué, I think He needs to lay off the ganja.

Fall Cleaning Day 2/3 Mozart in the Morning

I was tired last night, so I went to bed early. For me, that means around 10 p.m. Usually when I do that, I either can't sleep, or wake up in a couple hours and can't get back to sleep. This time I slept until 8:30, and woke up refreshed. GL slept until 9. That's different! Got some breakfast, started the laundry, got the boys started on their chores, and put on The Masters of Classical Music - Mozart. I think this will be a productive day!