We Go With Him

Amor et Labor

 

When we talked with Charlie's neurologist about changing his medications, it was suggested that we consider him staying at a certain facility in south Jersey. I said, we'd only consider that if you can accommodate all three of us. 

Well, obviously not. 

Taking Charlie off the first med, which had at first (as in a few years ago) helped and then seemed (more recently) to be stoking dizzy spells and more in him, went all right. We started the process with another med as what it does overlaps with what another med that Charlie is on does (they counter, among other things, anxiety).

Looking back at his rising OCD since mid-late March (insistence on five mile walks, going ONLY TO ONE PARTICULAR CHINESE RESTAURANT, taking certain routes out of Jersey City) and then -- perhaps as the levels of the med lessened and lessened in his body -- three serious panic/anxiety attacks all associated with Jim teaching late on Wednesday or Charlie anticipating such and resulting in first responders appearing and one ER visit -- it has been, it seems, proven, that he still needs med #3. 

Other news, thanks to my students, my Roman history class went up to the Flavian emperors. I will still end by reaching back to the reign of Augustus, the first emperor, and quote the tenth Eclogue of Virgil: Omnia vincit Amor; et nos cedamus Amori, "Love conquers all and let us yield to love."

Of course, he also wrote in the first book of the Georgics, labor omnia vicit, "work conquers all" -- we do feel honored and grateful, every day in and out, anywhere and everywhere, to be with our lovely, loving boy.

 

Roman History, Greek Memories, Jersey Rides

 

Can't believe it will be spring break at Jim's and my respective schools the week after next. I'm just a bit behind where I wanted to be in my Roman history class, on the cusp of the second Punic War (I'd wanted to be onto the final century of the Republic but we will be there come the week after the break). I think about Greece all the time, the memory of the three trips I took there (in 2009-2011) with students so very strong and streaming in at certain moments, as on a 5.45am walk Charlie and I did on Friday.

After going to sleep at 9.30ish the previous night, he had woken at 2.30am. He snacked, played music on the iPad and after I dozed off on the couch, was standing over me at 4.30am. I had a feeling he would go back to sleep if he took a walk so as soon as it was light enough out we went and had a pleasant time, me channeling early morning strolls before the hotel breakfast in Athens and Thessaloniki. Charlie went back to sleep in the brown chair while I went out running and then as I made coffee and got ready for class and was awake when I left. Jim reported he was groggy getting on the bus.

Charlie did well at school Friday (except for 5 unhappy minutes in the swimming pool; he pulled through it) as he had on Monday after waking at 12.30am. He slept deeply both Tuesday and Wednesday nights and had up-and-down school days Tuesday and Wednesday. No coincidence, I think, as we've noted the same patterns before.

By 7pm on Friday night, Charlie was sound asleep, only to wake at 11.30pm. I wondered how we'd get though 6 hours waiting for a walk but after pacing, snacking and to the tune of the Pogues, he went back to sleep till 9am.

We had a very good time out in Jersey horse country where, the snow and ice and wintry winds prevailing, we have not been for some weeks. Absence can make the heart grow fonder and Charlie enjoyed visiting the sometimes a bit uptight 'general store' for carrot cake and gamely did 12 miles on his bike.

For the rest of the day, Charlie kept asking to go to quite a few (5) of the eating establishments (except the Golden Arches) that we routinely visit. He ate some of the food but hardly with his usual zest; that antibiotic he has been taking for the rash on his face is probably proving, as those meds do, less than kind to his sensitive stomach. After a walk, a nap on the blue couch, and a local bike ride, went to Jersey City for Vietnamese food. He had a cup of peanut sauce and handed me the bag of food, then asked for burgers.

We went home, Charlie bellowing 'no home!' on the way. Then he was extremely happy to be back home.

I would say, he is trying to get across the sometimes and often contradictory thoughts and uncertainties and puzzlements in his mind. Having mostly a vocabulary of concrete nouns (maybe 20 in circulation at a given time) and without any of the bits of language that add nuance and precision (like the numerous particles in Ancient Greek and the seven verb tenses and parts of speech -- Charlie doesn't really use verbs but the ones he does are all present tense), Charlie has to use what he has.

I don't know if we are right in our estimations of his meaning. I am very glad Jim enjoys driving so much, and that I put some more gas in the car while he and Charlie were on the bike trail.

And that soon I shall be able to talk about Catullus and Virgil, in their own time.

 

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.

 

Facilis descensus Averno

facilis descensus Averno:

noctes atque dies patet atri ianua Ditis;

sed reuocare gradum superasque euadere ad auras,

hoc opus, hic labor est.  

---Virgil, Aeneid, VI. 125-129

Easy the way down to Hades:

Nights and days the door of black Dis lies open;

but to recall your step and escape to the air above,

this is the work, this the labor.

 

In other words, getting there is easy, crawling your way back up to where you began is a h--luva lot more work.

Case in point: Charlie perseveres with aplomb through an unexpected week off from school following an unexpected October snowstorm that changes the landscape of streets all across New Jersey and the Northeast. Then, the day before he is to return to his well-established routine, on learning it's back to school, major anxiety all around.

I'm sure the return to Regular Time after Daylight's Saving also had something to do with it. Charlie was up at 6am (7am to his body clock) and he and I went out for a crisp morning walk. By 9am, he was dozing in an armchair, not surprisingly after his 30-plus mile Saturday.

We went out to New Jersey horse country to ride bikes. It was afternoon when we came home and Jim and I started talking about school, a subject also broached on Saturday.

Ruckus ensued: Running out and back into the house, casting the plastic contents of one cabinet and a dishrack on the floor and overturning a garbage can (note to self: at sign of upset child, at least tie up garbage when it's got coffee grounds and onion peelings), sitting moaning back in the armchair. He demanded a bike ride; we mentioned being actually, really calm, lest there be ride-ruckus too.

There wasn't, though a walk later with the three of us saw some sudden sprints-with-yowls and one instance of rolling on a neighbor's lawn. No head-banging or grabbing or such. Charlie got himself up off the grass and Jim took his hand and I the back of his sweatshirt and we walked on in a steadfastly peaceably way learnt after 14 years with our boy.

Charlie spent the rest of the evening insisting his lunchboxes could not be put into the refrigerator (but not moving the Capri suns and crackers and sushi I piled up in the space where the lunchboxes would have been). He told me NO when I sought to show him the bus photo on his iPad but tolerated looking at it (for maybe 1 second) before switching back to one of him on his bike with my mom and dad taking photos. He told me 'Mom sit,' as in 'Mom, sit at your desk and don't bug me.'

By 9pm, Charlie was asleep, his iPad beside him. He'd plugged it into the charger himself, something he just started doing two days ago after previously getting very annoyed whenever I tried to tether his iPad to that white cord.

I have an 8am meeting Monday but cancelled. Transitioning Charlie back into the routine: Hoc opus, hic labor est.

 

 

Into the Pastoral Landscape

 

 

Virgil, Eclogue I

 

Meliboeus

Tityrus, you recline beneath a beech's spreading shade,

and practice at the woodland Muse upon your meagre reed,

we are leaving the limits of our homeland and its sweet fields.

We flee from our home. You, Tityrus, stretched out in the shade

teach beautiful Amaryllis to make the woods resound.

 

Tityrus

O Meliboeus, a god has made this leisure-life for us.

For he'll always be a god my god, on his altar

a tender lamb from our flock will often offer up his blood.

He, as you see, has let my herds roam and I myself

to play what I wish on my country pipe.

 

Meliboeus

I don't envy you, I wonder more; from everywhere and all

sides right to this field they're amassed. Woe though 

to the goats I, fading, drive. She's barely on her feet,

Tityrus. Amid these hazel trees her twins, the hope

of the flock I left behind propped on a bare flinty rock.

This evil I now recall oaks tapped by the sky had often 

predicted for me, if my mind hadn't been astray.

But anyways, tell me, Tityrus, who is this god.

 

Tityrus.

The city which they call Rome, Meliboeus, I had thought,

stupid me, similar to ours, in which we shepherds're

regularly wont to bring the sheeps' tender birth to light. 

So pups to hounds, goat kids to their mothers, as I knew,

so I was in the way of sizing up the great via the small.

But this city among all others holds up her head as

cypresses are the flowering shrubs.

 

Meliboeus.

And what was your good reason for seeing Rome? 

 

Tityrus

Liberty, which lately had turned her back on me

when I was stuck, after bared and gleaming