We Go With Him

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.

 

Sometimes You Just Need Wordsworth

 

And then came the lag on Sunday, after navigating through experiences novel and not so easy.

It was also 28 degrees on Sunday morning and Jim, knowing the Jersey horse county bike path would be even colder, had suggested a ride in Liberty State Park in Jersey City. Hearing the latter two words set off a need to get Vietnamese food in Charlie as the main reason we go to Jersey City with Charlie these days is for such. But the Vietnamese restaurant is not open till 5pm on Sunday and so, after a short, bracing (12 degree wind chill) ride past the Statue of Liberty at the park, Charlie had to shift his auto-pilot thinking about getting spring rolls. We proposed the ever-reliable McDonalds and Charlie said no. Then he said yes.

The first McDonalds was closed, with a chain-link fence around it. The second told us they don't serve lunch till noon (unlike every other McDonalds we know of that starts serving it at 11am) and then, as we were in the drive-through lane, we still had to wait and leave without the familiar bag of burgers 'n' fries.

The third McDonalds provided us with everything but, as it's on a very busy part of John F.Kennedy Boulevard across the street from the Journal Square PATH station, it has no drive-through and Jim dropped me off. Same food, different acquisition method.

After all that, Charlie fell asleep for almost two hours at home. He agreed to a bike ride but rode haltingly -- he has not wanted to wear his heavier bike-riding gloves that he had insisted on wearing into the hot days of June -- and, as he still had the spring rolls on his mind and he'd handled not getting them earlier so well, we went back to Jersey City and got a glorious view of the skyscrapers of the city all lit up.

Charlie raced around the house with glee while I chopped and cooked in the kitchen and Jim wrote a final exam. He went to his room, he wanted a walk. He put on his blue vest, took it off when we recommended he wear his green coat, put on the coat. I grabbed the first pair of gloves -- a leather pair of Jim's -- I found for Charlie to wear. It was certainly cold on the walk and the street was brighter than ever, as more people have put up holiday lights.

Ten minutes after we returned quietly home, Charlie was in the kitchen and we heard his voice and the sound of stuff flying -- he had grabbed the garbage and overturned it -- he ran upstairs, Jim with him, raging, banging.

We three have been through this many times indeed. Charlie was in severe distress and his left leg shook unstoppably while his head went all over. He calmed in stages, breathing heavily, and I offered him small sips of water. As soon as we could, we softly assured him, he was all right, he was doing good.

That might sound odd to the an outside observer. But for Charlie to calm from high, body turned-to-fight-or-flight anxiety, to sitting woefully on his bed with Jim and me standing by, requires a ton of effort on his part.

Charlie stayed in his room and rested. He started to smile. After an hour, he asked to walk again and it felt like take two, done the right way: He got the green coat without any confusion. He wore his heavy bike gloves, instead of unfamiliar leather ones.

After we were back, Charlie stood staring down at his feet for about 15 minutes near the bottom of the stairs, then went up to bed.

The world is too much with us; late and soon: This opening line of Wordsworth's sonnet so often seems to capture Charlie's travails. So often, everything is just too much. Too, too much and "getting and spending, we lay waste our powers" and all feels "out of tune."

 

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

 

We Like March

And I love Emily Dickinson:

WE like March, his shoes are purple,
He is new and high;
Makes he mud for dog and peddler,
Makes he forest dry;
Knows the adder’s tongue his coming,	5
And begets her spot.
Stands the sun so close and mighty
That our minds are hot.
News is he of all the others;
Bold it were to die	10
With the blue-birds buccaneering
On his British sky.

 

But of course, I love, we love, our boy Charlie best of all. 

The above 'car portrait' was taken on Sunday just as we drove up to the beach prior to Jim's and Charlie's 18 mile bike ride.

It wasn't as sunny and sparkly yesterday, Monday, and Charlie's fine-as-usual school day was disrupted with some moments of agitation as he exited the cafeteria. But in the evening, when the three of us were back in what is, you might say, our default mode---driving in the white car---Jim said when I reminded him that yesterday was indeed February 28:

'We made it, Charlie!'

Made it through another winter, that is; through another season of ice, snow and freezing cold; through another February, which has 'traditionally' been a month when Charlie, weary of being stuck indoors, has major behavior trouble. Only this year, as Jim quickly pointed out, 'we rode bikes every month, December, January, February.'

'You didn't last year?' I asked as Charlie rocked to the Kinks.

'January last year, but never February,' said our resident historian.

Well, maybe we can start liking February too.

No Ideas But In Things

Back in action, we are.

Charlie was slow to get up and out of bed after a couple of days' hiatus from school (plus that snow I mean ice day last Wednesday). Once at school, he was happy all day, asking to go to A(dapted) P(hysical) E(ducation) when he first came in and making, for the first time ever, hot chocolate in the microwave oven. (He did not, however, drink the hot chocolate but did, as his teacher wrote us, sniff it.) He and Jim were out on some dad 'n' son adventure when I came home. Charlie was in high spirits when they drove up and proceeded to select one of the two shovels from our porch and started shoveling 'Charlie-style.'

As you can see, there was no pressing need to shovel the snow, two days in the 40s and some rain having done a nice job in whittling the snow mounds down. Charlie, with a pleased smile, devoted himself to moving snow from the path he had made to the back door of the car onto the walkway. The result was that the path became much wider and flatter, while the walkway became, ah, a bit snowier.

And then Charlie surprised Jim and me by not asking to go out for a ride in the car anywhere, for the rest of the day. He had had his usual preferred early dinner and, snow work done, retired to his room, where he was very content to stretch out and relax until (still with the occasional cough) he fell asleep.

It has been a long time since he was as sick as he was in the past few days. (It's also been a long time since I was as sick as I have been---am not quite back to 'normal functioning' as of yet'---so far Jim seems to have had only a far milder version of this illness, if even that.) Since Sunday, I have sensed Charlie trying, straining to get himself better, and then succumbing (as I was) to being sick (and, highly unusual for Charlie, eating barely anything for a couple of days).

Monday afternoon, around the time I suspect Charlie was getting past the point of boredom with being home and coughing and sneezing and doing pretty much the same things for several days straight (and with no chance of his usual energy- and anxiety- burner, outdoor exercise), he got a plastic garbage bag, scooped out a pile of items he had insisted be placed in a certain spot on the living room floor for much of the past year, and put them in the garbage can. And that was that.

Later Monday night, when Charlie was asleep, I retrieved the bag. The items were all articles of clothing, an old blue sweatshirt of Jim's, a Pittsburgh Pirates t-shirt, and a couple of old shirts of mine, a scarf, a hat. The scarf and hat had been new almost two years ago but Charlie, for whatever reason, had not liked me wearing them and it was easier to have them add them to his stash, and use another scarf and hat.

The blue sweatshirt of Jim's was one Jim used to wear quite a bit even before we lived with his parents, on bike rides and just 'around.' Jim didn't miss wearing it and shrugged about it ending up in the garbage.The shirts of mine were nothing special, workout-type tops. I had bought all of them almost five years ago when we were living in the lower level of Jim's parents' split-level house. That year had been the one year when Charlie had come as close as he ever has to thriving in a special education classroom in a public elementary school. It was also a very tough year as my mother-in-law's numerous health problems, worsened and living all together became 'interesting.'

I'm not sure if Charlie associates those shirts with that time period. But for whatever reason, after we had moved back into our own house, he started to insist on 'appropriating' those shirts, and then the scarf and hat. For a time he kept them in his room (when I went to Greece last year). Yesterday, he had apparently decided, it was time to say good-bye to those particular things.

Monday night, after Charlie as asleep, I retrieved the bag of clothes and took out everything but the blue sweatshirt. I stowed my reclaimed shirts and Jim's Pirates tee inside something inside something in the basement. I'm not sure about keeping the shirts, but somehow I didn't feel ready just yet to get rid of them. After a good workover with a lint roller, the scarf and hat were ready for wearing and very cozily warm yesterday (with the temperatures falling into the high 20s). I intend to keep them stowed deep in the bottom of a bag when not being worn: Perhaps you could say Charlie kept them while he needed them, and now I get to use them again.

I did steal the title for this post from William Carlos Williams' 'A Sort of a Song.' I do often think the phrase 'no ideas but in things' is a fitting mantra for Charlie's way, or one aspect of his ways, of being in the world, in things, things steeped deeply in ideas. 

A couple weeks back Jim had made some statement to the effect of how Charlie lets go of---sheds---things as he knows himself moving on, growing up, letting go. Or maybe I'm reading too much into his discarding those items. Though I think it fair to say, that Charlie rarely does anything without a reason and a purpose, like that path he saw and dug into the snow.

To My Fellow Travelers & Commadres in Autismland

I have added a list of blog-friends, Fellow Travelers & Commadres in Autismland, over in the right sidebar-->.  I linked to some of your blogs and sites sometimes using the actual name of your blog/site and sometimes using your name. There's not any particular rhyme or reason to it; hope what you see is all right. I've moved around a bit since I started blogging five summers ago and think I'm going to be settled writing here for the near and not-so-near future.

I've listed everyone alphabetically, which makes for a long list. If you don't see yourself listed there (I know I have not mentioned someone, argh!), please leave me a note with your site in the comments to this post and I'll get a link up pronto.

I know the long list is a bit unwieldy. But I like having everyone whose blog, website, writing, life has somehow intersected with our corner of Autismland all in one space (that is, list), with parent blog next to that of self-advocate next to an autism book next to whatever site happened to be next, alphabetically. I like the juxtapositions and combinations, rather than pigeonholing blogs and sites into neat categories.

Too, unusual and unexpected juxtapositions are the norm in the life of our little family.

On our kitchen table if the 'I can set the table' placemat an ABA therapist bought years ago for Charlie is the latest volume of the Transactions of the American Philosophical Association (TAPA---with 'fun' articles on topics like the law of contracts in post-classical Athens (high time I started prepping my fall semester courses, you know); an IKEA catalogue (that we've absolutely no plans of ordering anything from, or using for interior decorating inspiration---three people in a smallish house with an awful lot of books and papers and things makes for inevitable clutter, but there is an order to it and a little clutter is not a bad thing for Charlie with his rage for order); the schedule for the town pool that Charlie has refused to swim in all summer; party favors from my California cousin's daughter's 21st birthday; a basket I think someone gave us full of something besides the paper napkins it now contains for our wedding; a pinwheel from a gift bag from one of Charlie's classmates' mothers; two dollar bills that, having been 'laundered,' are drying.

(Actually, all of my cousins, except for one, are California cousins. But I digress.)

The table itself has been put to a lot of different uses since my parents first bought it for me from the Conran's in New Haven, Connecticut. It was the kitchen table in my first apartment and supported many a dinner party with my grad student friends as well as hosting a few other portentous encounters. When my French computer science neighbor sublet my apartment for his parents to stay in one summer, they or he wrote a telephone number on something that must have been rather thin, as the numbers are permanently etched into the wood. I wrote my dissertation on this table (using the first, steel grey Powerbook) and the table was carted around from Connecticut to Massachusetts to Missouri to Minnesota and then all over New Jersey. Jim and I dined on that little table when we first lived together and in post-wedding, pre-Charlie days, and Charlie sat at it, propped up in his teddy bear print high chair. After many more (sometimes messy, sometimes merry, sometimes--le sigh---morose) meals, Jim used the table to write the early drafts of his book. When we lived in Jim's parents' house, the table again became my desk---a small piece of familiarity---and then again was Jim's in our apartment (the one where the neighbor informed us after a very days that we needed to cut down on the stomping) and then was plunked into the back of the black car and brought back to our house, to be a kitchen table once more.

I'm not sitting at the table to write this (a laptop is a laptop). But just as my---our---kitchen table is where so much from so many corners ends up in our house, so this blog is for me a kind of catch-all space to try to bring together the bits and bobs of our life. Obviously the focus is on Charlie and autism. But when writing about autism, there's a lot more to talk about than what Googling produces.

Like country roads (complete with hay bales) in lovely central Jersey.

Like boys on bikes. (Well, I guess I've rather made this a theme in these parts.)

Charlie helped us out immensely: He'd gotten into the car at 8.30am, ready to go on another (promised-the-night-before) biking adventure. I suspect he remembered that we'd forgotten the bike helmets last Sunday and had to double-back home for them: Yesterday, as Jim and I were loading up the bikes, Charlie got out of the car, ran inside, and returned, with the helmets. I'd say it's his job now to remember them!

He and Jim did the country bike path so handily, Jim led Charlie down the streets of the little town and around over a bridge and back up onto the path, to make the ride some 12 miles. They also did another 10-miler in the late afternoon on their 'home course.'

After traveling on different paths, it is good to be home. So says the ancient Roman poet Catullus:

o sweet gatherings

of fellow travelers,

be well! once

you all took to the road,

went away from home.

different the roads

that bring you back

from different quarters.

from Catullus, poem 46.9-11

 

However, friends you got here, thank you.

(Translation of the rest of Catullus' poem 46 follows.)

 

 

A Bit of Poetry

 I've been doing some blog upkeep/redesign and letting my inner geek indulge itself. I changed the banner photo from this to this and have been mucking around with the content in the right column (and even thrown in a photo of myself, since, as has been commented upon, the photos I regularly post rarely include me as I'm the family photographer). Don't be surprised if you come to this site and find things looking even more changed as I've not been able to resist trying out new templates and layouts and arrangements of columns and fonts and all that. 

I have a fair bit of inner geek to express. A significant percentage of my family members are either engineers or do 'something that involves computers i.e. they work in Silicon Valley.' As a Classics professor and avowed upholder of the humanities, I guess I could qualify as a black sheep except that, as you may have gathered, I like fiddling around with html code and computers and one could say it was a curious twist of fate that led me to become someone who knows the Latin and Greek root words of 'computer' and 'program' and 'digital' and all that---of 'silicon' too. At some point I'll get to a format that I'm pleased with (probably something very close to what you see already) and have to find other things to do, to distract myself from translating Virgil's Eclogues.

The Eclogues are pastoral poems. Their setting is the (ancient Italian and Greek) countryside; their characters are shepherds, goatherds, and neatherds (they take care of the cows, if you were wondering); their topics are generally love, poetry, and praise of the glories of the countryside versus the hectic, busy, potentially immoral life of the city. Sometimes a shepherd etc. has to go into the city; he longs, then, to return back home to the simpler good life in the countryside. Indeed, the first Eclogue is about two shepherds who meet on the road; one has to leave because a soldier has been apportioned his land, while the other is happily settled on his farm, as assured by no one less than the Emperor.

That's probably a bit more than you wanted to know about the Eclogues and on an autism blog, no less. I just went into a little detail because of the motif of going and coming, coming and going, in the first Eclogue. This blog is, after all, entitled 'We Go With Him' (it was 'Autismland' in an earlier incarnation, and, before that, 'My Son Has Autism'). And much as I liked the old banner photo of Charlie on his boogie board, I sometimes looked at it and thought, if it is 'we go with him,' then we're all following Charlie out into the ocean. Too, it seemed time to update with a more recent photo of Charlie as he's grown tremendously in the past year.

So, the new photo. The original photo was on this post, 'Solo,' and at the risk of sounding a bit grandiose, I consider it a shot of 'pure poetry.' I like that Charlie is running towards us, after a triumphant boogie-boarding and swim session in his beloved ocean, and at his favorite beach. He handles the board (still strapped around his left wrist) and he's running a bit à la Baywatch or like any ole surfer dude. When I think of how long it took to get him to being able to handle his own board, not to mention catching a wave with it in the ocean---and, going much further back, to learn how to walk (Charlie was 16 months old before he was able to do so)---not to mention the myriad of challenges that Charlie faces every day, and not the long long list of limitations he lives with---the photo captures something about Charlie that gets so very overlooked and forgotten as he forges ahead day by day.

Thursday began at 5.30am. Charlie woke up and showered, and he and I went walking (with me reflecting how much easier it is to get out of bed at 5.30am when it's not dark and cold). He had a fourth great day at school in a row, and then a bout of distress in the car driving home that involved a soda out the window and me pulling over and us taking a short walk down a row of houses and then a quiet trip home. Quiet, because I turned off the radio (it was the R and B hour on the jazz station and I was kind of feeling that they were playing Howling Wolf one too many times) and because Charlie was completely quiet, as if reflecting in a rather shocked way about what had just happened. 

He wanted a walk as soon as we got home which I thought a good idea; Charlie has been usually been requesting the computer once home, these past few weeks. Jim met us mid-walk and he and Charlie then went on a bike-ride. Sometime during dinner and computer and music-listening time, Charlie became much more relaxed and smiling, as if whatever had led to the in-car distress had at last worked his way out of his system. One more jaunt around the neighborhood with Jim and Charlie was very glad to go to bed, after another day of comings and goings together.

Now back to a little more blog design tweaking. And Eclogue 7.