I should probably begin with an update on how my little Pajama Monster is doing on the Lithium. Overall, it's similar to the Depakote. We had a couple of days at the start where he showed much better behavior, but extreme separation anxiety, but that seems to have subsided. One thing that we've been able to notice is that Pajama Monster seems to have a fairly predictable cycle now. It takes him about 3 weeks on his up-swing and 3 weeks on the down. It's not precise, but we can predict within a few days, and know generally how long it will be till things start to look better again. We added the Adderall back in after starting the Lithium and Pajama Monster did beautifully for about 3 days, then all heck broke loose and things got bad and stayed bad. We stopped the Adderall and within a few days he was back to his normal baseline. The upshot of all this was that Adderall helps a great deal with his inattention, but makes him swing manic, so overall not a viable option. We're planning to try a non-stimulant ADHD med such as Guanfacine over the Summer, but don't want to throw another change into the mix with only 3 weeks left in the school year. My inner scientist just won't let me test something when we can guarantee a major environmental change at about the same time. There's just no way to tell which one caused the improvement (if we see one at all).
I think that brings us up to present day, and if not I can fill in the gaps a bit later.
I had considered stopping my blog, but every now and then someone will send me a message that it helped them, and that makes it worth it.
Our Sensory Processing journey:
Since he was little, Pajama Monster has shown some signs of sensory processing problems. It's not enough to explain all of his symptoms. Sensory Processing disorder doesn't cycle, for example, unless something in the environment is also cycling. It may not be the only issue, but it does seem to be one piece of the Pajama Monster puzzle. Pajama Monster is one of those difficult to figure out kids who are both sensory seeking and sensory avoidant. Put him in a room full of children talking and moving around and doing homework and he'll go nuts. He can't take noise and movement all around him. He does seek out responses from people. He says he likes the excited feeling of people getting upset, but not that they are upset. He doesn't enjoy their suffering or the consequences that happen to him, just the stimulation of knowing that he's in trouble. It's a little like that rush of adrenaline you get when you think a car might hit yours, or you've lost something important. You don't want your car hit or your item lost, but if you needed a surge of adrenaline to help you focus, to make you feel grounded, then you might want that experience, even though you didn't want the consequences.
Pajama Monster also seems to seek out physical bumping, rubbing, pressing stimulations. He crawls, jumps off things, crashes into things, and often seems oblivious to food on his face, clothing on backwards, etc. It's as though his brain isn't feeding him all the signals about what is happening to his body. Apparently, this is a common issue with Sensory Processing and can lead the child to feel anxious, ungrounded, and seek the stimulation he's missing. I can't help but wonder if this is part of the reason Pajama Monster is seeking the excitement of adrenaline rush. If he's feeling ungrounded, like he isn't even really sure where his body is in space, it must be very hard to concentrate, especially if a large part of what is expected of you at school is to keep your body calmly sitting in one place. Over and over again I get calls that he's crawled over someone, sat on someone, ran into someone, and moved all over the place and wouldn't stay in one spot. I know he knows he's supposed to sit in one spot, but if he's craving sensory input, the drive to move and crawl and bump may be a little too much to resist. It doesn't make all these behaviors ok, but maybe if I can feed some of that need with something appropriate, he can stop trying to feed it with climbing on kids, irritating his teacher and running everywhere. I still think part of the adrenaline is to address his ADHD focus issues, so maybe the non-stimulant med will help there too. At the end of the day though, I'd rather have him crawl all over the carpet before heading off to school than add another med.
Now, I think I see sensory problems, what to do about it? Option 1, pay for an evaluation and therapy. I'm looking into this, but as my insurance doesn't cover it we're looking at running through our financial resources pretty quickly if we go with this option. I'm still planning to see if I can work something out with insurance, but so far not much luck there. Option 2, research the heck out of everything, contact other moms who have been through the therapy with their kids and try to do some of the first steps at home. While I'm researching option 1, I'm trying option 2. It seems that from Pajama Monster's behaviors, it's deep pressure and stimulation he needs. I'm trying to massage him, brush him with a sensory brush (honestly, it looks a lot like a soft plastic vegetable brush) and generally roll and press him before sending him off to school. Pajama Monster seems to think this is pretty great so far. I'm not using any pressure that he doesn't say is fine with him, I'm keeping pressure to what I would consider normal for a massage, and as always, Pajama Monster is in charge of what is allowed for his body. This isn't a holding therapy kind of thing. I think that if it doesn't help with the sensory issues at least it gives us some positive interactions and makes him feel happy and cared for before heading off to school. After talking to some friends it seems that they have had luck with having their kids slide down their stairs on their tummies, feet first, jumping again and again from a couch to a large mattress or foam beanbag chair, spinning in swings, and jumping on trampolines. Every kid is different, what works for a kid with one set of sensory issues might not work at all for a child with different sensory issues, so I'm starting with the brushing and massage and pressure. I'm thinking of adding a weighted vest for a little while to see if he likes it, and then I'll see what to add or subtract or change. Maybe we'll try some of the stairs or jumping onto a mattress. I'm hoping he'll get his sensory needs met, find a safe way to handle it when he feels like he needs stimulation, and maybe stop crashing into everyone and everything.
On the sensory avoidant note, I've mostly been advocating for him and reminding him to ask for what he needs. Today in a loud restaurant he said "I'm overstimulated!" Yep, I was pretty proud of him! We have headphones in my purse and at school. He can listen to music. I carry a book with me so he can read. He has that option at school too. He can also take a break in a quieter room. He just needs to ask when he's getting overwhelmed, and still do his schoolwork and follow the school rules. That's where we usually run into problems, but at least he has the accommodations there to use when he's making good choices. Maybe if we can fill up his need for physical stimulation he'll be calmer and more focused and can ask for what he needs when his other senses are being overwhelmed.
Oh my little Pajama Monster, you certainly keep me learning new things!
Saturday, June 1, 2013
The level system
Among all the things we've been trying to find for Pajama Monster, a set of rules/consequences that works at all stages of his cycle has been near the top of our list. I think I finally have one, though, as always, Pajama Monster ay throw us all for a loop later.
What we realized is that any system has to fulfill several criteria.
1. It must keep everyone safe all the time
2. It must not punish for negative behaviors (from the down swing) so that the up swing is spent "paying for" what he did previously. This would just rob all of us of any chance to bond, and rob Pajama Monster of his chance to feel successful and rewarded for making good choices
3. It must include appropriate consequences for inappropriate behavior
4. It must work for all phases of his cycle
5. It must be clear to Pajama Monster that he CAN earn trust and rewards, and what it takes to do that
What we came up with was a level system. Negative behavior, such as we see a lot of in a down swing, moves you back. Any day you make good choices (and the bar is set pretty low here) you move 1 day toward the next level. We've got 5 levels. 0-4. Level 0 lasts 2 days, the rest last 1 week. Level 0 is pretty much full restriction. If you're on level 0 you're there for being unsafe, destructive, or consistently causing serious problems. You're in your room or with a parent. Supervision is constant, and no electronics are allowed. Level 1 you can have your electronics, chime on your door at bedtime when we can't supervise because we're sleeping, and 15 minutes on the computer. levels 2-4 add privileges with each level, as we are able to trust more that destructive behaviors won't happen.
We've got 3 categories of infraction, 4 if you count the ones that we just remind him to stop or send him to time out for.
Losing a level:
You can go all the way back to level 0 if you set fire, injure someone such that they need medical attention of any kind, or destroy something your parents define as valuable. (This would include, for example, when Pajama Monster used a rock to dig huge scratches in the new windows we just had installed.)
You can just not make your day (not advance a day) if you're refusing to do the basic things asked of you, generally defiant with warnings to stop, etc
You can go back one day for minor destruction, stealing, hitting, etc.
It sounds complicated, but we just have a little print out with the privileges at each level, the ways to not "make your day" and a little line at the bottom with 7 days marked on it. I use a dry erase to move the mark for which day he's on.
The thing that I like about this is that we can use it for Baby Peep too. She makes her day more often, but we can show Pajama Monster why she's allowed to have some privileges he can't have, and exactly what he needs to do if he's like the same privileges. I trust her to have pencils in her room because she has made safe, non-destructive choices for 4 weeks. If she chooses to stab holes in the wall or scribble on the furniture, she'll lose that privilege, and if you choose to make safe, non-destructive choices for 4 weeks you may have pencils in your room too. It also becomes more restrictive, focusing on supervision and safety if he's making bad choices, and lightens up, giving him more trust and more freedom as he has more and more days where he makes safe and reasonable choices. One thing I wasn't expecting, it helps my husband and I remember to let some things go. If he's not hurting anyone, destroying anything, bullying, or refusing all day to do the basics that he has to do (brush teeth, pick up his stuff, do your homework, not scream threats and defiance at me) then he's doing what we expect and little slip ups are easier to let go.
What we realized is that any system has to fulfill several criteria.
1. It must keep everyone safe all the time
2. It must not punish for negative behaviors (from the down swing) so that the up swing is spent "paying for" what he did previously. This would just rob all of us of any chance to bond, and rob Pajama Monster of his chance to feel successful and rewarded for making good choices
3. It must include appropriate consequences for inappropriate behavior
4. It must work for all phases of his cycle
5. It must be clear to Pajama Monster that he CAN earn trust and rewards, and what it takes to do that
What we came up with was a level system. Negative behavior, such as we see a lot of in a down swing, moves you back. Any day you make good choices (and the bar is set pretty low here) you move 1 day toward the next level. We've got 5 levels. 0-4. Level 0 lasts 2 days, the rest last 1 week. Level 0 is pretty much full restriction. If you're on level 0 you're there for being unsafe, destructive, or consistently causing serious problems. You're in your room or with a parent. Supervision is constant, and no electronics are allowed. Level 1 you can have your electronics, chime on your door at bedtime when we can't supervise because we're sleeping, and 15 minutes on the computer. levels 2-4 add privileges with each level, as we are able to trust more that destructive behaviors won't happen.
We've got 3 categories of infraction, 4 if you count the ones that we just remind him to stop or send him to time out for.
Losing a level:
You can go all the way back to level 0 if you set fire, injure someone such that they need medical attention of any kind, or destroy something your parents define as valuable. (This would include, for example, when Pajama Monster used a rock to dig huge scratches in the new windows we just had installed.)
You can just not make your day (not advance a day) if you're refusing to do the basic things asked of you, generally defiant with warnings to stop, etc
You can go back one day for minor destruction, stealing, hitting, etc.
It sounds complicated, but we just have a little print out with the privileges at each level, the ways to not "make your day" and a little line at the bottom with 7 days marked on it. I use a dry erase to move the mark for which day he's on.
The thing that I like about this is that we can use it for Baby Peep too. She makes her day more often, but we can show Pajama Monster why she's allowed to have some privileges he can't have, and exactly what he needs to do if he's like the same privileges. I trust her to have pencils in her room because she has made safe, non-destructive choices for 4 weeks. If she chooses to stab holes in the wall or scribble on the furniture, she'll lose that privilege, and if you choose to make safe, non-destructive choices for 4 weeks you may have pencils in your room too. It also becomes more restrictive, focusing on supervision and safety if he's making bad choices, and lightens up, giving him more trust and more freedom as he has more and more days where he makes safe and reasonable choices. One thing I wasn't expecting, it helps my husband and I remember to let some things go. If he's not hurting anyone, destroying anything, bullying, or refusing all day to do the basics that he has to do (brush teeth, pick up his stuff, do your homework, not scream threats and defiance at me) then he's doing what we expect and little slip ups are easier to let go.
Friday, March 15, 2013
Off his meds
The last several weeks have been rough. A little over a month ago Pajama Monster's blood draw showed that his Depakote levels had suddenly skyrocketed for no apparent reason. He was suddenly well above the therapeutic range. Naturally we reduced the dose and our doctor ordered another blood draw to see if the Depakote levels had dropped and to check on liver function. Two weeks later his Depakote was still high and his liver tests were showing overly high scores too. After more tests and reductions it became apparent that Pajama Monster's liver was just not going to keep playing nicely with the Depakote, so the Depakote had to go.
Our psychiatrist recommended Risperdal again and again we refused. Perhaps it would fix all the behavior problems we're having, but it would also make him feel a little sedated and increase his lifetime risk of tardive dyskinesia and diabetes. He's only six. He can't be sedated through his childhood. How will he learn and grow as he's supposed to? No. Just no.
The next and safest option appears to be Lithium. Now we had to decide when to start it. It took about a week and a half to wean Pajama Monster off the Depakote. We were given the green light to start the Lithium increase while we were doing the Depakote decrease, but I didn't want to do that. Pajama Monster has been medicated for a long time. Deep in my heart I kept hoping "What if he doesn't need the meds as much any more.? What it he's matured and can handle things better?" I wanted so much for that to be true. I felt that I owed it to Pajama Monster to at least see how things are off everything. I notified the school so that Pajama Monster's behavior wouldn't be held against him. As we tapered the Depakote his behavior kept getting worse. I kept hoping that we'd hit rock bottom, but that didn't seem to happen till about 1-2 days after we stopped the Depakote completely. We also stopped the Adderall right after the Depakote stopped so that we could start with a clean slate. Surprisingly, his appetite came back as we stopped the Depakote, not the Adderall. I kept hoping that maybe we just wouldn't start any new medication and he's be ok with just behavioral intervetions. By last Monday, a day before we finished the Depakote, we pulled Pajama Monster out of school. He was becoming increasingly violent, hitting teachers, having screaming meltdowns, and usually had to be removed from the class for the entire day starting at 9:15. School starts at 9:00.
I think we've finally hit rock bottom. We started the Lithium 2 days ago. Pajama Monster has been poking holes in his wall and scratching up his bed. He pooed on the floor and the urinated on his bed to make a "yellow Easter egg" stain while I was on my hands and knees scrubbing up the poo. He's urinated down his heat vent, urinated into various containers, even taken the plastic 3 ring sheet protectors out of his art binder to fill them with urine. He threatens to kill me and hits me. He steals and has started removing the pins from door hinges. He has screaming tantrums and can't calm or listen to reasoning or warnings. Much like before "Pajama Monster, please don't do that. No! Do not do that! You will lose your computer time. *Parent moving to stop him* Stop now!" has no impact whatsoever and he's surprised and furious when, after he does whatever it was we were telling him to stop, completely ignoring all directions, he then loses his computer time, or has whatever consequence he's been warned about. He has all the problems he did when we started the medication last time. I didn't want to medicate, but I don't see how he can have any kind of life like this. He can't go to play dates because of his violence. He can't function at school. I just pray this medication is the right choice. I don't know if anyone is out there reading this, or if it's just a place for me to vent, but if you do happen across this blog, and you're willing, prayers for my litle Pajama Monster would be truly welcome.
Our psychiatrist recommended Risperdal again and again we refused. Perhaps it would fix all the behavior problems we're having, but it would also make him feel a little sedated and increase his lifetime risk of tardive dyskinesia and diabetes. He's only six. He can't be sedated through his childhood. How will he learn and grow as he's supposed to? No. Just no.
The next and safest option appears to be Lithium. Now we had to decide when to start it. It took about a week and a half to wean Pajama Monster off the Depakote. We were given the green light to start the Lithium increase while we were doing the Depakote decrease, but I didn't want to do that. Pajama Monster has been medicated for a long time. Deep in my heart I kept hoping "What if he doesn't need the meds as much any more.? What it he's matured and can handle things better?" I wanted so much for that to be true. I felt that I owed it to Pajama Monster to at least see how things are off everything. I notified the school so that Pajama Monster's behavior wouldn't be held against him. As we tapered the Depakote his behavior kept getting worse. I kept hoping that we'd hit rock bottom, but that didn't seem to happen till about 1-2 days after we stopped the Depakote completely. We also stopped the Adderall right after the Depakote stopped so that we could start with a clean slate. Surprisingly, his appetite came back as we stopped the Depakote, not the Adderall. I kept hoping that maybe we just wouldn't start any new medication and he's be ok with just behavioral intervetions. By last Monday, a day before we finished the Depakote, we pulled Pajama Monster out of school. He was becoming increasingly violent, hitting teachers, having screaming meltdowns, and usually had to be removed from the class for the entire day starting at 9:15. School starts at 9:00.
I think we've finally hit rock bottom. We started the Lithium 2 days ago. Pajama Monster has been poking holes in his wall and scratching up his bed. He pooed on the floor and the urinated on his bed to make a "yellow Easter egg" stain while I was on my hands and knees scrubbing up the poo. He's urinated down his heat vent, urinated into various containers, even taken the plastic 3 ring sheet protectors out of his art binder to fill them with urine. He threatens to kill me and hits me. He steals and has started removing the pins from door hinges. He has screaming tantrums and can't calm or listen to reasoning or warnings. Much like before "Pajama Monster, please don't do that. No! Do not do that! You will lose your computer time. *Parent moving to stop him* Stop now!" has no impact whatsoever and he's surprised and furious when, after he does whatever it was we were telling him to stop, completely ignoring all directions, he then loses his computer time, or has whatever consequence he's been warned about. He has all the problems he did when we started the medication last time. I didn't want to medicate, but I don't see how he can have any kind of life like this. He can't go to play dates because of his violence. He can't function at school. I just pray this medication is the right choice. I don't know if anyone is out there reading this, or if it's just a place for me to vent, but if you do happen across this blog, and you're willing, prayers for my litle Pajama Monster would be truly welcome.
Monday, February 18, 2013
He knows everything
Pajama monster often believes he knows everything about everything. He probably wouldn't say it that way, but he does say that he doesn't think he should have to listen to his teacher since he knows so much more than she does, and no matter how great the danger or how firm the limit he's sure he can ignore the limits and danger because he has a smart plan to handle everything. Those plans are almost always pure fantasy and run along the lines of "but if I got a tank and drove it over and used a huge metal pair of tongs to..." He also believes he should be the boss, make the rules, control everyone's actions, and that he has the right to do pretty much whatever he wants whenever he's in that mindset. Grandiosity is a symptom of mania, but seems to be one that isn't talked about a lot in pediatric bipolar. Perhaps it's less common, or just less understood. Perhaps people just chalk it up to bossiness or brattiness, but if it only shows up in a manic episode, it isn't that the child is a brat, it's a symptom of the mania. Frustratingly, this is a chronic struggle with Pajama Monster.
The truth is, he is very bright, and his ideas are often very creative, great ideas, but when that becomes magnified into an inability to join play because he has to change the rules so everyone is following his directions, and an inability to function in Kindergarten without constantly being reminded to follow the rules, it's a problem.
The question is, what do I do about it. Mania doesn't respond to reason. It isn't that he's just not looking at the right set of facts and that's why he's thinking this way. His brain chemistry is making him feel like he's king of the world and so he's acting accordingly. There's no way to argue with that. I can point out the teacher's degree and age and experience, and point out the huge gaping holes in the logic of his plans, but they just don't register when he's manic. He's Superman and I'm just some citizen pointing out that he's wearing his undies on the outside of his costume. He doesn't care. He's Superman!! The only thing that seems to work is to increase the level of supervision till the phase seems to be passing. This is, of course, the very last thing he wants us to do when he's manic, so in some ways we're just causing him to fight against the rules more. The alternative it to let him get hurt though, so we're stuck increasing structure when he wants it the least.
The other thing that has helped some is explaining things from a "because you're awesome and should get what you want" perspective. On some level this is easy, because no matter how much I want to scream at him sometimes, he's my son and I do believe he's awesome and I do want him to get things to make him happy. One of our latest is my explanation on how to get kids to do what you want in play. Pajama Monster's standard MO is to walk up to a group of playing kids, announce some change in the play, then continue yelling, calling and trying to get the attention of the other children while doing everything in his power to get them to follow his new idea. This usually looks something like this: Group of kids are running in circles around a tree roaring and pretending to be dinosaurs. Pajama Monster runs over and announces that he's planting food for the dinosaurs, then tells them to all line up to get their food. The kids at this point are usually just continuing to roar and run in circles. Pajama monster starts calling more loudly, then warning that the food is going to go bad, then that they'll starve, etc. All this time the kids are running and roaring. If by some chance the kids do line up to get the pretend food, Pajama Monster will start micro managing every item of how they line up and what they say to get the food and which foods he will allow them to have, and what happens once they eat them and on and on. It always ends with the kids wandering off to play and Pajama Monster following after them still yelling rules, then being a sad little boy on my lap who doesn't understand why no one will let him play. The upshot of all this is my new "get people to listen to your great play ideas" technique. Step one: Notice EXACTLY what the group of kids are doing. Step two: Do EXACTLY that. Do not add rules or your own spin. Just join THEIR game. Step three: Wait for the kids to show they're playing with you through eye contact, smiling at you or talking with you. Step 4: Suggest (don't order) one of your great ideas Step 5: if they don't like it, wait a minute and try a different great idea, or, if they do like it remember to only decide what YOUR character/self can/can't do.
This is just one little piece. It doesn't fix the help myself to whatever I want and bully my sister and ignore limits issues, but at least maybe it will help him look at ways to get what he wants without just demanding over and over.
The truth is, he is very bright, and his ideas are often very creative, great ideas, but when that becomes magnified into an inability to join play because he has to change the rules so everyone is following his directions, and an inability to function in Kindergarten without constantly being reminded to follow the rules, it's a problem.
The question is, what do I do about it. Mania doesn't respond to reason. It isn't that he's just not looking at the right set of facts and that's why he's thinking this way. His brain chemistry is making him feel like he's king of the world and so he's acting accordingly. There's no way to argue with that. I can point out the teacher's degree and age and experience, and point out the huge gaping holes in the logic of his plans, but they just don't register when he's manic. He's Superman and I'm just some citizen pointing out that he's wearing his undies on the outside of his costume. He doesn't care. He's Superman!! The only thing that seems to work is to increase the level of supervision till the phase seems to be passing. This is, of course, the very last thing he wants us to do when he's manic, so in some ways we're just causing him to fight against the rules more. The alternative it to let him get hurt though, so we're stuck increasing structure when he wants it the least.
The other thing that has helped some is explaining things from a "because you're awesome and should get what you want" perspective. On some level this is easy, because no matter how much I want to scream at him sometimes, he's my son and I do believe he's awesome and I do want him to get things to make him happy. One of our latest is my explanation on how to get kids to do what you want in play. Pajama Monster's standard MO is to walk up to a group of playing kids, announce some change in the play, then continue yelling, calling and trying to get the attention of the other children while doing everything in his power to get them to follow his new idea. This usually looks something like this: Group of kids are running in circles around a tree roaring and pretending to be dinosaurs. Pajama Monster runs over and announces that he's planting food for the dinosaurs, then tells them to all line up to get their food. The kids at this point are usually just continuing to roar and run in circles. Pajama monster starts calling more loudly, then warning that the food is going to go bad, then that they'll starve, etc. All this time the kids are running and roaring. If by some chance the kids do line up to get the pretend food, Pajama Monster will start micro managing every item of how they line up and what they say to get the food and which foods he will allow them to have, and what happens once they eat them and on and on. It always ends with the kids wandering off to play and Pajama Monster following after them still yelling rules, then being a sad little boy on my lap who doesn't understand why no one will let him play. The upshot of all this is my new "get people to listen to your great play ideas" technique. Step one: Notice EXACTLY what the group of kids are doing. Step two: Do EXACTLY that. Do not add rules or your own spin. Just join THEIR game. Step three: Wait for the kids to show they're playing with you through eye contact, smiling at you or talking with you. Step 4: Suggest (don't order) one of your great ideas Step 5: if they don't like it, wait a minute and try a different great idea, or, if they do like it remember to only decide what YOUR character/self can/can't do.
This is just one little piece. It doesn't fix the help myself to whatever I want and bully my sister and ignore limits issues, but at least maybe it will help him look at ways to get what he wants without just demanding over and over.
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