Monday, January 23, 2012


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.

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Anonymous Anonymous said...

I don't know if this was directed towards me or not. I will say that: THIS. THIS IS MY SON. Everything you have written here (with exception of the "kill" thing, but only because he hasn't been exposed to that word yet) describes Ted perfectly.

I have had people tell me he was too cute, too precious, too *insert adjective here* to be the way I described. I had to resort to taking video and pictures because no one would believe me. I made audio recordings of his meltdowns. I documented. I cried.

We FINALLY got him on meds. At 30 months old. We are now on our third atypical antipsychotic. We are on our third stimulant, and just tried an SSRI (Zoloft), but it caused excessive bleeding.

He metabolizes like a, well, I won't swear on your blog, but you know what I mean.

There are two Teds. There is "happy" or regular Ted. And there is OUT OF CONTROL Ted. When OOC Ted is in the hizous, forget about it. It is all done. The days, or weeks are crap and it is like he sucks the will to live right out of our souls.

Happy Ted is a ray of sunshine.

In short, this kid is an exhausting ball of energy that sometimes feels like he IS killing me. Slowly. Dear God, ever so slowly.

We are on Abilify, too. :) It works. We know it does because when we tried to ween him down because of high cholesterol, life sucked in a major, major way. Back on "Vitamin A". Hoping to try Depakote by the end of this week.

Such is our life.

Reading your post was amazing. Like I say, This is Ted. It is incredible to read about another child so similar. Especially when people like our psychiatrist try to tell us that he is too social to be autistic.

Thank you for writing this.

January 24, 2012 at 8:04 PM  
Blogger Papa Bear said...

Thank you for your blog. It's so good to talk to someone else who "gets" what I'm talking about!

January 24, 2012 at 9:03 PM  
Anonymous Anonymous said...

I linked to your blog on my IEP Meme post today. I said that your post was great and kinda sorta already filled the Meme request - talking about our kiddos' IEPs: what they do or do not get.

But more important than the IEP bit is the part you wrote about the professionals not getting it - unless they live it. THAT needs to be sent to every professional on the planet. Or, they need to be encamped for a few months with a special needs family as part of their hands-on training. :)

January 25, 2012 at 12:51 PM  
Blogger DeeAnn said...

Wow. Reading that upped my blood pressure a bit. It brought back memories of my husband and I going through Due Process with our school district over Cody being in the least restritive environment. (BTW- We won.)

Hang in there and stick with your gut! Please keep us posted.

January 25, 2012 at 9:40 PM  
Blogger Cindy said...

Figuring out the right meds is HARD work. Having to work with a professional who doesn't "get" it is stressful. My first psych doc didn't believe my oldest was bipolar because he was so charming during the 10 minute appt. I dragged my son in during one of his spots, and then the psych doc. kinda got it. Still didn't think bipolar.

Then my bipolar son was in his suicide spot, and I insisted that the psych doc. start a bipolar med. The psych said, let's wait through the weekend. I figured there was a reason for it, but I didn't get far out of the office before there was another huge episode, so I called back. Still insisted on waiting until Monday. Suicide watch is STRESSFUL. All weekend came and went by his side on high alert. Monday comes, and the psych doc says, "Well, it was just three days." WHOA! Has he never been with someone who was suicidal? JUST three days?! Fired.

And yes, the med did work that I insisted on ... after 1.5 YEARS of on again, off again, suicide. UGH! As parents, WE must be educated to get really good care ...

Know that I understand and believe.

February 18, 2012 at 7:29 PM  

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