In Mediis Rebus
Dadless Day

Limbo or Maybe Purgatory

I'll have to ask the resident member of a theology department which term Is more apropos to Charlie in this 2 1/2 week post-camp, pre-school, end of August period.

As said resident theology question-answerer informs me, Limbo was eliminated by 'them' some years ago. Purgatory makes me think of the Divine Comedy (and Virgil is still there to guide Dante in the Purgatorio).

It is a kind of holding-pattern period for Charlie. I can't say if he doesn't like it or not; he seemed glad enough Monday morning to find himself not going anywhere. We went for a walk, he smiled, Jim took him to the barber and he wasn't so smiley and cried some. (His face must still be tender from the infection?)

I lost track, but it seems like over 60% of the rest of Charlie's Monday was passed in what would be called massive stim behavior. Standing in one spot, making breathy (occasionally farty, best way to describe it) noises, twisting his head a bit round to the back, squatting down, blowing out, twisting his shoulders, putting his arms back a bit, crossing his arms in front of his chest and twisting his torso. He did this for long sessions in his room, in the parking lot of the burrito place, in the living room, in two different spots on a night walk (anticipating which, I brought insect repellent on the walk -- despite a good dosing, I still got several bites; clearly I am damned with bugs-love-me pheromones), in the kitchen. For minutes becoming hours. (It is after 2am as I write this and he is still at it in the kitchen.)

It is also the case that Charlie is congested, probably with a sore throat and fuzzy head (and, as inevitably, probable resulting stomach trouble).

Plus, it occurs to me that he has done some unusual things in late August days, especially when Jim has had to go in to Fordham for various functions (Tuesday's are the dissertations defenses of two of his grad students). Last year, Charlie basically stood on the sidewalk waiting for Jim for a good chunk of one day (6 1/2 hours) and then proceeded to spend most of another day sleeping.

I think Charlie's dealing with anxiety, stress and change in his own way. Frankly, I'm glad to wait it out (preferably not in parking lots, but you can't have everything). After having tried social stories, calendars, all kinds of clever iPad apps, 'first...then' type of talk, Jim and I decided to prepare Charlie for Jim being gone most of Tueaday by... Not talking about it at all.

It's become clear to us that there's no need to tell Charlie about such big changea in our very routine life. He figures it out and not from eavesdropping parental whisperings. Clearly we must communicate something in other ways and Charlie does a lot more than reading lips. He reads all actions and situations.

Rather than any sort of redirection (except in the parking lot, for obvious reasons called 'cars driven by people who aren't wanting a primer in autistic teenager habits'), we are letting be and being affirmative. Charlie is doing what he can to deal with things and deserves a lot of credit for that. Standing on sidewalks for over an hour and swatting at mosquitos is no paradise but if this is a substitute for SIBs, emptying cabinets of dishes, throwing books, knocking over bookshelves, smacking body parts on ours and other people's property, adding to the collection of the holes in our walls --- infereno-esque, some might say -- we'll take it.



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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