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20 August 2012


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Barbara @therextras

The key feature of purgatory (from my learning) is that there is hope of entering heaven, over the hopeless (forever) hell.

I'll untheologically-expert-opine that 'purgatory' is the correct term for waiting-out Charlie's current behaviors.

Sometime during our teens' lives we also began to withdraw our habitual preparation-for-future-events-warnings, requiring them to pick up on cues. That's an important developmental progression.

Albeit I'm sure you are the best at interpreting Charlie's behavior, I have a tendency to look for an organic cause myself. Is there any pain relief med he can take for the sore throat? Sounds like you already interpret prolonged stimming with self 'medicating' or diversion from discomfort.

I also worry about stimming as a representation of seizure activity. Brain growth during teen years combined with a different growth trajectory....well, I just worry.

Hoping you all are well on your way out of purgatory today.

Kristina Chew

We've given him the over-the-counter things for throat and headache pain (feels like I have been pouring pills into him of late). I've got the throat today so I have a better sense of how he's been feeling. And there was a stomach issue; in fact, I think he was up till 5am because of it.... and then only slept till 7.30, because of his stomach and when Jim left.

Antibiotic/diarrhea and cold + sinuses/constipation + anxiety/stomachache = a very bad combination!

I'm glad you mentioned the seizures. We mostly noticed all the stimming as ESY was ending and Charlie has been known to have similar periods of doing unusual things when he has a physical ailment or is in a transition; with the latter, he has, as noted here, had some violent and aggressive behaviors. I'm keeping track of where he stops for the stims: So far, three specific places on the sidewalk (mostly one, where he has tended to stop before) and yesterday also for a long time in front of the soda machine at the burrito place.

Wondering if lights, sounds might be having something to do with it too.


I agree with Barbara about purgatory, but just to state that Limbo was a life-long (or soul-long!) waiting period with nowhere to go after....your acceptance of where Charlie IS in each moment is fabulous....and your are giving him space to deal with his emotions, physical ailments, pain, uncertainty, and even that stretch of the 'unknown'- how to deal with structure-less days? (Even I, as a NT adult, feels some dismay at the beginning of a structure-less week....

Kristina Chew

@Susan, Thank you, you're too kind -- I've changed, or hope I've changed, a great deal to help Charlie over the years; so much I wish I had known earlier.

I'm wondering if Charlie has the feeling (not at all the concept!) of being in limbo!

I just made him a schedule to mark the 2 more weeks he has till school. It's been hard to add too much structure to his days because we've really been trying to gauge 'where he is' before planning too much. It was good to do something different than the usual usual yesterday --

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by Kristina Chew …………………………

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