Church Picnic

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

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

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

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

Medication

To a mother who is facing some of the same things:

When GL's meds are working, he is his quirky but lovable self. People who have only seen him at these times have a hard time believing what his behavior is like when they're not working. Even when his meds aren't working, he can sometimes hold it together for brief periods in public. It's at home that all hell breaks loose. Some people have a hard time a hard time believing he needs meds. Those who are by temperament opposed to medicating children "on principle" have never lived with GL unmedicated. Until they have lived with (not just "worked with" where they get to go home at night) long-term (years, not months) a child who truly needs psychotropic medication, both when he is medicated properly and when he is unmedicated, they have no idea what they're talking about. When GL is not properly medicated, no amount of talk therapy, affection, training, discipline, reasoning, dietary intervention, PT, OT, chiropractic, supplements, or any of the other things that have been suggested make the least bit of difference.

And even when his meds are working, he tells outlandish stories. Sometimes he is exaggerating. Sometimes he just makes stuff up. Some stories are plausible. Others are wildly improbable, but not impossible. Others are not remotely possible. Still others are so bizarre as to be largely unintelligible. He is completely unable to see the distinction. On rare occasions, he has admitted to exaggerating, but the more times he repeats a story the more he believes it. Once he decides it's true, no amount or kind of evidence can convince him otherwise. He will just keep repeating the story, which in his mind, makes it more true. It's best to drop the subject. Arguing will only encourage him to perseverate on it.

We have seen this pattern again and again. Here's what happens with GL. We find a med that works. He gradually begins metabolizing it out of his system faster, and needs an increased dose.  He adapts to that dose, and we have to increase it again. (This is assuming he hasn't grown or put on weight. If he has a growth spurt, it accelerates the process.) Eventually, it stops having any effect at any dose, and we have to find him a new med. For more details, look up tachyphylaxis.

He has burned though a new med in as little as six months (not counting the meds that only worked for a few days, or not at all) . Until Trazodone, the longest any med worked for him was 18 months. I'm expecting Trazodone to stop working any time. When his meds aren't working, nothing else makes a damn bit of difference. We had one psychiatrist who wouldn't do anything but increase his dose, even when it obviously wasn't working. He was up to 100 mg of Seroquel 3 times a day, plus another 500 mg at bedtime, and it had no effect. (I knew a 230 lb. man with violence, aggression, and sleep issues. 100 mg of Seroquel would knock him out for the night. GL was 12 years old, and less than 90 lb.)

It took four months to find another psychiatrist who would take GL's insurance. Every day for four months straight, he physically attacked every member of the family, slammed the door hard enough that he broke off the doorjamb and punched out the doorknob, tore pictures off the walls, emptied bookshelves, threw things, pounded on walls, and attempted to break windows. We had to hold him down. He was sleeping less than 4 hours a night, and he wanted company. He would pull our eyelids open to wake us up. We had to put a lock on the basement door because he was trashing the basement every night. He kept screaming, "I'm going to kill you!" Now GL sometimes uses words he doesn't understand if he knows they get a reaction, so one day, between storms, Mama Bear asked him what he meant. He said, "I will put a string around your neck, and you will stop breathing, and you will be dead." When your 12 yos tells you every day for four months, "I'm going to kill you!" and means it, it has a way of wearing on a person.

I tell you all this not to worry you or minimize your son's troubles, but to say, I know. I understand. When you are in the middle of a medication not working, it feels like it is your fault. If only you had more strength, endurance, love, more whatever. You would do the right thing, no matter how hard, if only you knew what it was.  (We call it being "under siege" because it takes over our lives, and it takes all we can do to survive. Nothing improves until reinforcements arrive, and we have no way of knowing when that will be.) It's not your fault. You've seen what he can do when his meds are working, and you haven't changed what you're doing.

We had to fire GL's psychiatrist who wouldn't try a new med. I know, easy to fire, but hard to replace.  But when we found a new doctor, he said getting GL to sleep at night was his first priority, because no one can function long-term on so little sleep.  He started him gradually on a new med (when the old doc did make changes, they were always cold turkey) and within a week, he was sleeping 6-8 hours a night. With the additional sleep, we were able to function better. He continued the gradual increase until we found a dose where GL would sleep through the night, keep his aggression in check, and still function during the day. Then he began tapering off the Seroquel.

Because GL has his ups and downs from day to day, and his behavior deteriorates over weeks or months, it is hard to recognize a medication issue at first. But when the bad days get worse, the good days become rarer, and then disappear altogether, the weeks drag on, and it begins to feel like locking one of us up would be an improvement, I don't care if it's him or me, I know we need to look at his medication. It doesn't always get this bad; I'm getting better at recognizing it in the early stages, but it does sneak up on you, and it does take time, and sometimes trying several meds, to find one that works.

In September, GL started public school for the first time. (Before that we'd homeschooled.) We warned his IEP team about his behaviors. We tried to paint a worst-case scenario, because we feared they would be unprepared for his behaviors and send him home. They assured us that they were confident they could handle anything he might do. We figured, this being the Special Ed department, he couldn't be the first student they'd had with these issues.

Because he has a hard time with functioning in a group, new environments, sensory stimuli, and changes to his routine, we insisted on starting him with one class period, and adding other periods one at a time. Since his school divides the day into four periods, we expected he would have a full school day by Christmas. For the first two months, school went beautifully. He was on his best behavior at school. His teacher and classroom aides seemed to imagine that we had exaggerated his behavior problems. At home, it was a different story. He was grouchy but tolerable during the week, but weekends we were under siege. We more or less expected this. In any new situation, he is on his best behavior at first. He does his best to hold it together as long as he can. This is stressful for him. At home, where he can let his hair down, it all comes out. He doesn't usually melt down around people he knows until he feels really comfortable with them.

After a month, we added a class period. After two months, we had decided to add a third period. Before an official change could be made to his schedule, he began yelling at people at school, kicking lockers in the hallway, and hitting other students. The school balked. They would not add another period. They said they didn't have a plan for these behaviors, they didn't have the staff to deal with them, and they couldn't have them at school. They seemed to expect us to fix his behavior without their help, and may have been looking for ways to get him off their hands entirely. Um, we don't have a little remote control at home that we can use to control his behavior at school. We warned you about his behaviors; it's your job to come up with a plan. He has a right to a free, appropriate public education, and having autism does not take away that right. A half day does not fulfill your obligation. We started him with a partial day to make it easier for him to adjust, not to make your job easier. He is as adjusted as he's going to get. If you need more staff, that's your responsibility; we can't hire them. And did I mention that since the school provides all his therapies, his insurance has cut them off, but because he's not in school those periods, he doesn't get them?

We were working on the only part of the problem we had control over: adjusting his meds. Since his behaviors started coming out at school, he stopped hitting people at home. His psychiatrist agreed: He said we should not have to choose between GL hitting people at school and hitting people at home. We spent November and most of December trying different meds at different doses. Some worked better than others. On one med, he was hitting people at home and at school. The week before Christmas, he started Abilify. We saw some improvement immediately. Once we found the right dose, the siege was over. He's been back to school three weeks now, and late last week, his teacher commented that his behavior had improved markedly, and we might be able to add another period soon. We still have a long way to go to get him everything he needs from the school, but at least now we are headed in the right direction.

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.