We Go With Him

How a Boy of His Own Rituals Managed on a Day of National Ritual

 

Until about 5.30 pm-ish, Charlie handled the holiday and the inevitable disruptions its traditions and rituals impose on his routines and ritualistic nature. He actually smiled in the late morning as we drove up to the burrito place with the 'closed' sign in the window (we proceeded to a nearby McDonald's that was open only to be told we had to wait all of three minutes to get Charlie a hamburger as it wasn't yet 11 am) and was game when we sought out a far less-preferred, non-Jersey City Vietnamese restaurant. He had displayed his anxiety about the day by being in 'hurry up please it's time mode.' waking early and launching immediately into a walk then a bike ride then a bike ride then a walk.

He asked for a third bike ride around 3 pm and waited well with a timer only to say 'no' to the ride and thence followed some hours of mounting uneasiness (connected in part to eating about two dozen pieces of paper-wrapped chicken and about two dozen prawns in the space of an hour -- I did make sure Charlie drank a lot of water amid it all; he has no sense of 'portion control' or 'if I eat all that my stomach will feel bad afterwards'). He sat for perhaps five minutes on the couch and a certain flat affect in his face led Jim and me to take some precautions.

Charlie's mien eased up a bit and, foregoing any of the Thanksgiving meal -- that ritualistic food not being part of his ritualistic-ness-- he spent over an hour upstairs with the shower turned on and the ocean waves playing on his iPad, in a routine he occasionally embarks on when his stomach is not cooperating.

I do think he is setting up some kind of sensory re-memory of being at the ocean with such. If not being in the waves, being in the outdoor shower (that every beach house has) -- Charlie used to love to take endless 'hot showers.'

Afterwards, he went to bed after I had helped him put his room back to rights, just as he likes it: Wednesday might, he had wanted to sleep in the room where my parent usually do. They had switched all their things into Charlie's room as a result and changed the bedding and Charlie was especially insistent that I do 'green pillows' -- put certain green pillowcases back on the pillows on his bed. We couldn't find these initially, only to find them in the closet and then Charlie was relieved.

O! Bessed rage for order, pale Ramon, / The maker's rage to order words of the sea...

 

That Here We Pace

 

Jim was not due home till 8pm again on Wednesday and I anticipated a more nervous than on Tuesday Charlie, his pattern being (exemplified by the results of my three successive trips to Greece) to be less able to deal with things (well, some things, like Mom In a Foreign Country Time Zones Away) over time. But Wednesday afternoon passed indeed without incident and without extra just-in-case security measures involving pharmaceuticals.

For the better part of two hours, Charlie and I (said meds in pocket) walked in circles on our front lawn with a long sing-songy chant of 'Daddy Daddy Daddy' / 'Daddy coming' at the end (on Tuesday, we had started the Daddy-kenning just around 6pm). Various individuals, dogs, bike riders and cars passed us by.

Next Wednesday is due to be more challenging as, while Jim will only be working late one night (the usual Wednesday) -- he can't change his teaching schedule till next year; scheduling at universities is like that, a bit 'set in stone' and thou shalt not ask Registrar nor the Deanery to change nary a thing within the academic year -- it will not be until 10.30pm and there will not be a night ride as Charlie and Jim enjoyed very much last night.

I had memorized Simonides' epitaph for the 300 Spartans who died at Thermopylae -- I read it first the year I learned Ancient Greek when I was 14 (it's at Herodotus 7.28) -- and it has echoed in my head ever since.

ὦ ξεῖν᾽, ἀγγέλλειν Λακεδαιμονίοις ὅτι τῇδε / o stranger, tell the Lakedaimonians that here

κείμεθα τοῖς κείνων ῥήμασι πειθόμενοι. / we lie, their orders obeying.

('The Charge of the Light Brigade' about the 600 started to seep into my thinking too.)

Elegiac couplets are well to recite as one goes through one's paces.

 

Letting Go of the Albatross, or Trying To

Rain and a good soaking mean nothing: Charlie and Jim ride bikes.

That's what you have to do when life gives you rain; a handtruck with a flat tire (Jim was still able to drag out that massively oversized white elephant TV onto the sidewalk with it); said long unused and broken TV (it is an albatross bought with good intentions by my parents) that is not picked up in the annual town pick-up, possibly because it really is just too big -- yes, I have never liked it! I haven't watched TV since I was 13. You say, zounds, or the equivalent, and have a good ride.

I'm saying 'sblood  as Charlie and I pass the midnight hour together. His belly must be bothering him, based on the amount of food he has eaten and his fervent requests to go out for more. Hormones must be at work, too.

Fortunately, 8am Latin class is midterm review and, as aforementioned, I can teach Latin and ancient Greek on no sleep, with the flu (no, i don't have it right now but there have been times i have, plus fever, sore throat, headache, yes bellyache and -- really the worst from a teaching perspective -- a runny nose), post-severe behavior storms (that has certainly happened several times over the past 13 years), and for sure and ever after a long night's voyage with our boy and mariner.

6am, Tuesday morning: Charlie did sleep, around 2am, after snacking more and filling the bathtub with water. He was smiling when he finally lay down.

 

The Cruelest Month

Pace TS Eliot, August is the cruelest month in our household.

Charlie has a week and a half more of summer school and then 7 days of camp run by the ARC, which he may or may not be able to handle (he did well last year and the camp is friendly and low-key but there aren't as many staff as there are at his school, partially because so many would-be-staffers are college students who have to go back to college and since Jim and I teach at colleges, can't complain about that).

The weeks afterwards until school begins following Labor Day are always tough. It's hot and humid with thunderstorms (and irksome changes in the air pressure), there's lots of unscheduled time, and everyone else is either on vacation and going on a trip or wishing they could. 

Yes, the words 'oh it's so great he's off from school' can grate a bit!

I recognize I'm whining. Plenty of kids have no summer school, or a few weeks of half-day summer school and no camp -- Charlie's summer school lasts for 6 weeks and his days are just a half-hour less than during the regular school year. But this is the time of year when I start thinking, year-round school would be the best for Charlie. Fewer disruptions and of course there would be breaks and vacations. It's the long summer holidays that he and we could do without. I'm anticipating his end of summer school anxiety to start next week, if it has not already.

The end of August is usually a bit of a scramble as Jim and I are both supposed to start teaching then but Charlie is off. It does all usually work out, if a bit messily (you have to be creative, let's just say), and everyone breaths a collective sigh of relief when it's the day after Labor Day and back to school.

August used to be the month we routinely spent two weeks at the beach. It was glorious and fun when Charlie was little but the last two years much less so, especially as Charlie, after a few swims and bike rides and a walk by the ocean, seemed to really want to be back in our house which, while not close to the beach, is just a few hours' drive away.

Things are manageable! But I guess we're always looking out for improvements.

After his post-3am going to sleep on Thursday, Charlie got up for the 7.35am bus, slept most of the morning, had a great afternoon including a great speech session, a happy bike ride, an early dinner, a good (non-napping) rest and then wanted a walk at 8pm. However, a severe 'derecho' thunderstorm had started pouring down rain with accompanying lightning and thunder so walking was out of the question. Charlie made several requests then waited, good as gold, in his brown chair. He fell asleep there and got up to go to bed around 10.30pm, slept till 4am, and we all did the yearned-for walk at 6am when the air, even in the summer at the end of July, is cool.

On a Long Night, and After Many Many Years, Lattimore

One day off from summer school which just began for the fourth of July on Wednesday. My parents due to arrive on Saturday. Summer heat and a touch of rising humidity. A full moon. That bane of the teenager, acne. Fireworks for the above-noted holiday. Life as a teenager who spends all of his non-school time with his parents.

It is all giving Charlie a bellyful of cares or rather curas. The latter is from the Latin word cura which means not 'cure' (not in classical Latin at any rate) but 'care, worry, woe, trouble, anxiety, pains.'

I was hoping to do some writing about various scintillating topics like the Facebook email foul-up or the big mess of a merger being made of certain New Jersey institutions of higher learning. But that would mean my mind and fingers would be active in a certain way and Charlie just seems to sense these.

It does makes me think, for nine months I carried this child inside of me and then for thirteen months more I nursed him, making the best eye contact every time, we've still got the buzz from a psychic-ish connection going.

Jim does the best intuiting and interpreting of Charlie's moods. I decipher (or try to) Charlie's sparsely worded, seemingly non-contextual pronouncements (I start from the premise, it all has meaning, just as every piece of a poem fits together into the proverbial well-wrought urn).

This night bridging Monday to Tuesday feels like it will be an insomnia night. So typing can wait and I am reading a text of strange and potent familiarity, a reissue of Richmond Lattimore's 1951 translation of Homer's Iliad, the first translation I ever read of the epic, and with a very fine introduction by the professor who advised my Junior Paper on food in the plays of Aristophanes in 1989.

Sing, goddess, the anger of Peleus' son Achilleus...

 

Inversion

In the direct inverse of his going to sleep at 3am on Thursday morning, Charlie woke up at 3am on Friday morning. He wanted an immediate walk; the timer helped him wait for 3 hours. Again, he did fine at school, happy on his bike rides. There was some extra standing, stomping and sounding on a 2nd evening walk that Jim came on too, both of us being mindful of the last walk the three of us had done the night before Jim's Boston trip in February.

I had spent 5 hours (thanks to a 5-car accident on the NJ Turnpike driving to Pensylvania to see a very good friend. I haven't seen her in 15 years. Her husband died suddently last July. She has two children, both a little younger than Charlie.

We got cappucinos at the Starbucks of the state university campus where she was attending a poetry conference (he was a poet and a scholarship was announced in his memory) and talked.

I got home before Charlie's bus came and have been focusing on doing the daily things with Jim and him. Jim has even mentioned that loaded word -- 'airport' -- and while we were driving in the car to NJ horse country for a Saturday morning bike ride. Charlie just kept sitting. I'm thinking, the best way to handle my departure and being gone is to be as nonchalant as possible.

Though I do have to cut up about a dozen apples and leave them in the refrigerator.

 

The More Talk About Poetry and Autism, The Better

I really wanted to go into New York on Wednesday to attend this autism symposium as a friend was speaking and the program looked intriguing. I thought of rescheduling the Latin tutorial I have on Wednesday morning but decided not to as I had recently done that when Charlie was on spring break. As things turned out, only half the class (i.e., one student) showed up.

It only rains and it pours: Thursday, I went with Jim into New York and, over lunch, had a tremendous talk with Patricia, Katy and Kristen of Easter Seals.

We got back in good time before Charlie's bus. After an eagerly called for bike ride, I went to hear Priscilla Gilman read from her book The Anti-Romantic Child and found myself thinking about autism, poetry and my two favorite Romantic authors, John Keats and Heinrich von Kleist, and time and lyric poetry and the sublime and beauty. And, about the happy coincidence of Autism Awareness/Acceptance Month and National Poetry Month.

Jim has referred to Charlie on his bike as 'poetry in motion.'

With all this ferment of activity, Charlie is still awake with 2am nearing. He can (I feel sure) sense how today was very different, full of too many good ideas and great talk, much of it centered upon no one less than himself.

 

Orality and Literacy and the Homeric Question

This is really more of a note to myself. In the midst of routine posting about disablity rights, IDEA, the aftermath of the Arab Spring protests, Charlie's and Jim's bike-capades and running reasonably fast for a 43-year-old mother down the street after our boy (not because, as some people think, he is running away, but because he has a beautiful bow-legged stride and Jim and are sending repeated requests to Special Olympics and Charlie is learning the joy of running as I did at his age) -- I think, after many years and abstracts for panel presentations that never became papers and lesson-planning about Latin declensions and Greek participles and grading papers and quizzes, that I have found a research focus. 

The Homeric Question and orality and literacy, informed by research about the communication and language of individuals with speech disabilities -- who are non- are minimally verbal -- who do not read (in our text-based society) -- and how music and metaphorical language and memory play a part.

I'm refining this focus and also starting to read the mountain of scholarship -- Milman Parry, Albert Lord, Greg Nagy, Adam Parry, Nietsche -- on this huge topic. 

Permanence in Change

 

"Permanence in Change" is the English translation of "Dauer im Wechsel," a poem by the German Romantic poet Johann Wolfgang von Goethe -- and permanence in change is, I often think, the central issue that we, as Charlie's parents and sole caretakers, grapple with. How to provide Charlie with enough routine, order and regularity in his life, while still teaching him to function and be in a world of constant change?

A world in which we are all, Charlie included, getting older, with bodily and physical changes to match.

A world in which new and out-of-the-ordinary experiences and phenomena pop up frequently.

We have learned, through harsh experience, that letting things remain the same too much and too long for Charlie, and he seems to be knocking and banging himself about in a sort of OCD box -- that he does need change, though subjecting him to it can often seem far more painful than anything encountered before. Over the years (and especially in the past 2-3 years), we think (hope) we have gotten a better sense of knowing when it is time for a change-up.

For his part, Charlie seeks to manage his way through the changes, some of which may be so well-liked that they become the new routine.

But the initial encounter with change is always hard and often cause for fear: Because if things are different, who's to say that everything won't suddenly morph into something else?

Charlie was not entirely at ease on Monday, but managed as he might through a lot of unusualness: The full moon of the past few nights that seems to be affecting his sleep. The curiously warm temperatures on Saturday after the -3 Celsius days of a week ago. Another visit from reporters during which he attempted to wear a microphone -- what a sensory puzzle that must have been -- and became disconcerted as the evening drew on, as signaled by Charlie slamming the door of his bedroom loudly several times.

The reporters were accommodating and Charlie was all right and even smiling as, before going to bed, he watched a Barney show he has seen many times before while I took a little video, something I don't usually do and something I suddenly wanted to do, to catch a passing moment for a little longer.

 

'Heard melodies are sweet, but those unheard / Are sweeter'

It's blurry, but can your see that Charlie is smiling in this photo?

He woke up at midnight on Monday night.

And he went back to bed.

And he stayed in bed.

And slept until 5am.

Smiling onto the bus and a great day at school.

After a bike ride (it was almost 50 degrees here, great for bike riding in the almost-winter, bad as it seems more signs of global warning), Charlie into the house and said 'Gong Gong Po Po.' Yes, my parents arrive tomorrow -- which is today, Wednesday -- for the holidays. This usually means a bout of grandparent anxiety, but maybe that had something to do with behavior storms last week.

Having slept so much the night before, Charlie had a harder time going to sleep on Tuesday. He and I went for a walk, he ran around the house, used his iPad in his room, ran more around the house, came downstairs.

I stopped into his room to see how much of a charge his iPad battery had and saw that he had put a favorite photo on the iPad screen. In it, Charlie is wearing an orange t-shirt and hopping out of his bed, on which are placed Barney and Alphabert, in a wonderful ocean front beach house where we rented a place for two summers before it was torn down to make way for mega-beach-house monstrosity.

No wonder Charlie had been playing a bit of the Beach Boys earlier in the evening.