Praise the Lord, and Pass the Prozac!

Actually, while GL has been on Prozac in the past, it's Abilify I'm writing about today. As you know if you've read the last several posts, we have been working toward a full school day since he started public school for the first time in September. He had a major setback in November when his meds abruptly stopped working. It took nearly two months to find a med that worked. He started Abilify just before Christmas, and it has been a godsend. 

He was allowed to go on his first field trip last week. This is huge. Not only because they were reluctant to take him, for fear of a public meltdown, but because field trips are such a large part of what his class does. The school day is divided into four periods, with one period per day four days a week, and two periods on the fifth day devoted to field trips. These aren't just entertaining time-fillers;  on each trip, the students have an assignment designed to teach them how to use various resources in the community. If you've spent significant time with special-needs kids, you know how much work this can be, and how important it is to their future independence. My son is fifteen years old, and he can't count money or cross a busy street by himself.

Today, his teacher said he is welcome on any and all field trips. This will change his school schedule from roughly half-time to nearly full-time. Praise the Lord, and Pass the Prozac! er, Abilify!

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.

The Dive Bar Welcomes: _______

Jillsmo at Yeah. Good Times has an occasional feature called The Dive Bar where people can send her things they'd like posted, but don't want to post to their own blogs for one reason or another. Today's post hit close to home:

Tuesday, March 1, 2011

The Dive Bar Welcomes: _______

I figured rather than saying "Anonymous," I'd be a little more creative. 

Autism is kicking my ass.

Because I hate how relieved I am when the bus shows up in the morning.

Because I hate that my heart starts beating faster when it returns in the afternoon.

Because every day is like walking through a mine field lately.

Because every day I hold my breath, waiting to see if my child will be breaking things or barely holding them together.

Because nothing is helping any more, not one fucking thing.

Because no one is interested in helping anymore either, autism like this isn't so cute.

Because we have been doing this for years and beat to a pulp.

Because we have tried diets and supplements and tested pee and mailed shit samples and been on ever psychiatric medication under the sun and nothing.

Because I always scoffed at those people who let their children go to an inpatient facility.

Because I always thought that would not be us.

Because now, I am painfully, painfully aware of where those people are.

Because now, that desperation and that feeling that autism has taken far too much control and you just can't let it take anymore, that feeling sucks.

Did I say autism is kicking my ass? I take that back. 

It's not just kicking mine, it's trying to knock down my child and for once, I'm out of moves to fight back.

Reprinted with permission from: http://yeahgoodtimes.blogspot.com/2011/03/dive-bar-welcomes.html

 I've been there. For months at a time. Whenever GL's meds stop working. And during those times, we don't know when they'll end, or even if they'll end. Neither does his psychiatrist. I'm not being pessimistic here; anything more optimistic would be lying. We try one med after another, and nothing helps. Some meds make things worse, even though worse seemed inconceivable. Every time so far, we eventually found a med that helped. Things would improve for several months. Then they'd start to decline again, and we'd have to increase his dose. Eventually, the new med wouldn't work at any dose. It's called tachyphylaxis. For GL, it typically takes about a year, but it has been as long as 18 months, and as short as 6. Every time so far, his psychiatrist has been able to find a replacement that works. There's no guarantee that will continue.

A Must-Read

A mile in his shoes

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?

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.

Greetings From Your Friendly Neighborhood Pariah

I'm not complaining, because things are going pretty well at the moment. And we have a church that has gone out of its way to make our whole family welcome. And, even pre-autism, I've always been socially awkward and found social interaction exhausting and, well, hard. So I can only imagine what this life would be like for someone who finds socializing = revitalizing and who withers without it. Still, on the days when I'd like to be more connected with people, this post says it all: Greetings From Your Friendly Neighborhood Pariah.

Recognizing Autism

Unlike most children with autism, GL did not develop symptoms before age three. He didn't have terrible twos. He was happy and precocious. Nothing bothered him. But shortly after his third birthday, something new began. He would occasionally, and for no apparent reason, turn into:

None of the usual methods of dealing with tantrums had the least effect. (They worked fine for BB.) At first, we could usually distract him, calm him, and then deal with whatever had set him off. But he became harder and harder to distract, his rages seemed to come out of nowhere, and it got harder and harder to discern what, if anything had set him off. In between times, he was his usual lovable self, but as these rages became more frequent, intense, and lengthy (45 minutes to an hour was not uncommon) it seemed like there was a tiger loose, and GL came out to play less and less often. When we finally got a diagnosis (shortly after his 7th birthday) we were able to get medication to help control these outbursts. It was like putting the tiger back in the cage, so GL could come out to play more often.

Since then, that's been a pretty good measure of how well his meds are working: Tiger time vs. GL time. The quality of the event hasn't changed; he's just gotten bigger, stronger, and more coordinated. He's five feet tall and 120 lbs. He pounds on walls, doors, and people. (We try to keep him away from windows.) We just came through a couple weeks of GL melting down twice a day, and even with medication these meltdowns were lasting over an hour. We got his meds adjusted this week, and things seem to be smoothing out. We'll see.

Treading Water

I feel like I've been treading water the last few weeks, and I'm only halfway through. I will only be home one weekend in August and one in September. Like Jonathan Bing, "home's the best place for all people like me." During the week, I'm trying to re-establish some semblance of routine and illusion of order. BB is driving me to distraction. He's not uncooperative, his mind's just not on his work. It's been a constant struggle, but it seems to be worse lately.

GL has had relatively few meltdowns, but they've been big ones. Yesterday, he wasn't calming down, even with medication. He went for nearly two hours. I almost took him to the hospital. That evening, I had to take him with me to Civil Air Patrol because our sitter was out of town. I couldn't miss that meeting because I was teaching a class. It was close enough to bedtime that I gave him his bedtime med as soon as we got there. He was relatively quiet, if a little goofy. I was still uneasy about bringing him, but I had no other option. Then today was Goldilocks vs. the Dentist.

On the lighter side, Understanding my son posted Coming Full Circle. Be sure to follow the link, Duh! to the earlier post, Teaching Sass. And Arby posted a children's story with a happy ending that made me laugh out loud. As Mama Bear said, "Don't read Arby when you've got to pee!"

Goldilocks vs. the Dentist

Part One: Terror in the Chair (Holy or Unholy)

The dread kids with autism feel at the thought of going to the dentist, and the dread their parents feel at the thought of taking them have been well described by Tim at Both Hands and a Flashlight. And no matter how we handle it, we're going to feel guilty.

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 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 on his last visit, Dr. N. found a cavity. Next visit will be GL’s first filling. Dr. N. is willing to try it, but is still not ready to prescribe a sedative. GL has his daily meds, plus an extra Trazadone tablet to be given PRN, and we’re going to try it with that.

When GL had stitches, it took four men to hold him down, and he was two years old! Now he’s thirteen. Once, after surgery, he had a bad reaction to morphine. The doctor said not to give him any more morphine, but wouldn’t start a new pain med until the last dose of morphine was out of his system–and they had just given it. He got so upset, he stood on the femur that had just been sawn through that morning. Desperate, the nurses put a bolus of valium in his IV. Have you ever watched an animal be put to sleep? We had a cat once that was dying and in misery. Mom wanted to be certain he was out of his misery, but couldn’t bear to watch. She asked me to take him in, and watch to be certain he was dead. GL’s response to the valium looked exactly like that. It was frightening, disturbing even. But when he awoke, he was calm, and they were able to give him a different pain med.

All this to say, medication makes me uneasy, but compared to GL’s meltdowns, or seeing the “pediatric/special needs” dentist again, (which would bring on a meltdown, if not in her office, once we got home) temporarily drugged out of his mind doesn’t sound so bad. But I’d rather have the Versed they gave him before surgery. About an ounce of liquid in a dose cup, and it apparently didn’t taste too bad, but once it started working, although he was quite awake and alert, when they asked if they could take his Game Boy away, he didn’t care.

Part Two: In which we Hope to Avoid the loss of anyone's Teeth or Fingers

Today was filling day. Before he left the house, I gave GL his bedtime meds, plus everything else we’ve been told we could safely give him. Ever notice how it doesn’t feel as safe when it’s your kid? But I didn’t know what else I could do. Mama Bear took him to the dentist. I had to promise to take him to the library for DVDs afterward before he would get in the car. I stayed home with BB, who has been having issues of his own.

MB said that GL didn’t yell or fight, but Dr. N. seemed nervous about the whole thing. GL spent the whole time worrying aloud, which made Dr. N. more nervous. GL tolerated the needle fairly well. MB gave everything less-threatening-sounding names, which helped a lot. So the needle was only a “pinch” that would make his tooth “tingle” not “sleep”, and the drill was only a “scraper”. I know it sounds like lying to the kid, but to him, names are everything, and the wrong name can send him into a panic far worse than the procedure itself can.

Near the end of the drilling, GL hopped out of the chair and said, “I’m done!” Only those who know him very well can appreciate the finality that phrase carries. That’s when Dr. N. looked Really Panicked. You just can’t leave a tooth like that. Since they were past the point of no return, MB resorted to bribery, something we desperately try to avoid, because no matter what you offer, GL always tries to negotiate for more. She offered to take him to the store to buy a DVD. He got back in the chair, and let Dr. N. finish drilling and filling as quickly as he could, hoping GL wouldn’t change his mind again. Dr. N. was embarrassed, saying this wasn’t his best work, but it should hold.

MB found a boxed set of all three Stuart Little movies for $10. I hope he doesn’t expect three DVDs next time he needs a filling, but it was enough to keep him busy until bedtime. Still, he kept coming to me with sad, tired eyes, asking to go to the library for more DVDs. I told him I’d take him when he finished watching these, knowing that won’t be until tomorrow, when we were planning to go anyway.

Meltdown

You've all seen tantrums in two-year-olds. A meltdown is to a temper tantrum what a major hurricane is to a gentle rain with occasional gusts of 20 mph wind. There are qualitative differences as well. GL had a meltdown today.

Reasonably good training by a parent or caregiver largely eliminates tantrums in most children before they reach school age. They may still try the tactic on occasion, but strong social disapproval usually extinguishes the behavior even with especially bad training. In children with autism, however, while careful management, hyper-vigilance for triggers, and medication can help reduce the frequency of meltdowns, they cannot eliminate them. This introduces new difficulties as the child grows older and social expectations increase. Picture a 5', 120 lb. 13 yo throwing himself on the floor in the middle of Wal-Mart and throwing what looks like the mother of all tantrums, cubed, and think of the level of social disapproval directed at both the child and his parents. Thankfully, as he has grown, more of GL's meltdowns have happened at home.

When GL was younger, a meltdown would deprive him of the ability to process any form of verbal input. We had a friend studying to be an ASL interpreter, and she came to our house to give the family weekly lessons. Sometimes when he couldn't process speech, he could understand if I signed to him, even if he couldn't sign or speak coherently at the moment. Now he understands most of what people say during a meltdown, but can't respond rationally. Imagine all the anger a 13 yo is capable of, combined with the verbal skills of an 8 yo, and the reasoning of a 2 yo in mid-tantrum. He screams the most inappropriate things he can think of at volumes that can be heard down the block. Things like, "Help! Call 911!" "You're hurting me!" or, like today, "Get off me!" even when there's no one in the room. He also imagines the most bizarre and horrific punishments, and screams, "Don't _____!"

Even at home, with the doors and windows closed, we imagined the neighbors could hear, and worried about what they might be thinking. Today, we found out they could. I had taken the car into town to run some errands, and GL decided it was time to go to the beach. It was not time to go to the beach. We try not to let him dictate our schedule, and when we need to change it to adapt to his needs, we try not to let him get the feeling he is in charge. And with the car gone, Mama Bear couldn't have taken him anywhere if she wanted to. He proceeded to throw a record-breaker, even for him. When the dust had settled and the smoke cleared, there was a sheriff's deputy on our doorstep.

MB explained that GL has autism, and invited him in to meet GL, who by this time had calmed down and more or less forgotten the preceding events. The deputy asked if we knew these neighbors. No, we don't. He asked permission to explain the situation to them, so they wouldn't worry and call the police next time GL has a meltdown. MB agreed. I got home shortly after he left.