11.13.2009

Obsessive Compulsive Denial

We had a Leo team meeting today. Me, Supervisor M, Supervisor E, Therapist V -- and Leelo, because I couldn't find anyone to watch him. Having him at our table was fine -- he was willing to do activities during the meeting's first 45 minutes as long as I kept replacing them, and let him count out and eat occasional goldfish.

I received a lot of careful and welcome reminders regarding interaction with Leo --backing off on verbal prompts for activities where the goal is independence (eating slowly, post-toileting hand washing), no verbal interaction during self-injurious behavior but, after a beat, immediate praise of praise-worthy actions, e.g., "You're sitting so nicely! Good job, Leo!"

And we talked about whether he's having his annual November behavioral spiral. He seems less engaged and more giddy, and he's been having toilet accidents at school. The stinky kind, not the wet kind. Every day this week. It's a huge, consternating surprise to us all and especially to me, because it's been so long since he's had a toileting accident of any kind on my watch that I stopped toting backup clothes or wipes. I do think it's a mostly intentional behavior, because he can hold it when needs to -- for instance, for the 30 bathroom-free I-5 miles between announcing his need to go, and reaching Coalinga. Wanting attention, wanting post-bathroom reinforcers, having trouble with transitions,  a sensory layer we've not perceived fuzzing up his internal signals? I don't know if I'd feel comfortable sending him to a new school -- even for one day a week -- if he's having toileting issues.

He's having beyond-stim issues as well. They've piled up slowly, so I wasn't alarmed until Supervisor M gently pointed out the frequency of Leo's spins, his need to trace certain paths between our car and house, and his empty rather than processing based echolalia. She wants us to confer with Leo's behavioral psychiatrist. I suggested that his OCD-like behaviors might be rooted in how much he's grown over the last year while his Risperdol dosage has remained constant, but she quietly reminded me that Risperdol helps with aggressive, not patterned, behaviors.

So it looks like we might be having a November after all. So far it's a milder version than the aggression- and depression-fests of past Novembers, but a November nonetheless. Not enough of a November to derail Leelo's planned Christmas trip to his grandparents' home for the first time in four years, but enough that steps need to be taken, and the worry furrows on my forehead are deepening.

8 comments:

  1. Anonymous3:34 AM

    After all these years I still can tell what time of year it is by my boys behavior. interestingly the bathroom issues are also how they show their anxiety, still. Whether it is the change of weather, time change or the over stimultion from the onset of the holiday season, Leelo will learn to handle it better as he grows and understands himself. I also think that on a day to day basis keeping themselves together in an atmosphere that causes them stress(school) is one of the reasons they have these periods of "backstep." Lelo's ability to handle this will also come in time. Promise.

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  2. It's so hard to see the forest for the trees sometimes, isn't it, until we trip over the roots and scrape our knees. At least, that's kind of how it feels in my house.

    I can't offer the kind of hindsight perspective that Elise can, but I can offer sympathetic understanding. And camaraderie as we tread the path together.

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  3. Anonymous5:58 AM

    Today, just a virtual hug.

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  4. squid, go back and read your entries for prior novembers. last year, the one before. if this is a november, then bask in how very far you've come. and will continue to go!

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  5. Ah, Squid,

    To quote Robbie Burns: "Come Autumn, sae pensive in yellow and grey, and soothe me wi' tidings o' Nature's decay."

    Hang in there. November can't last forever.

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  6. I still would think about the medication dose, and even the medication itself? (Am basing this comment very much on our experience with Risperdal, which did not seem to be helping Charlie when we took him off it in June.)

    Charlie had a regression in the toileting department when he was about 8-10 years old. I started carrying clothes around again. It wasn't as often as the ones Leo is having but it was beyond frustrating.

    Perhaps Leo senses the changes ahead of him (regarding school) and that understanding is manifesting itself in behaviors; in wanting to keep things routine and the same (like the increase in patterned behaviors)?

    Thinking more----

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  7. Let me know how we can help you weather what's left of this season. If Leelo needs more time solo with you we can always take the girls, and if you need solo time I can always bring my entourage to your house so you can get a break.. even if it is to travel from Strawbux to Strawbux.

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  8. Thanks all.

    It's time for his periodic check-in with the behavioral psychiatrist who prescribes his meds anyhow. I think the Risperdol is still working for him in terms of reduced aggression and better sleep patterns. But we'll see what his doctor thinks.

    Today was better, he seemed happier. We are not terribly bothered by the behaviors -- however if they are interfering with his learning then we do need to investigate options.

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Respectful disagreement encouraged.