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.
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