on the road with our son Charlie in Autismland
"Special Education 101," Thinking Person's Guide To Autism (ed. Shannon Des Roches Rosa, et al.)
"Fractioned Idiom: Poetry and the Language of Autism," Autism and Representation
"No Search, No Subject? Autism and the American Conversion Narrative," Autism and Representation
Catholic Lives, Contemporary America (South Atlantic Quarterly)
Dr. America: The Lives of Thomas A. Dooley, 1927-1961 (Culture, Politics, and the Cold War)
The Yankees got rained out on Sunday.
Charlie (who did go to sleep, around 3am on Saturday night/Sunday morn) and Jim did two bike rides for a 30-mile weekend.
(Yes, I was tempted to call this post 'the big muddy.' Guess I've been recalling the Mississippi besides which Charlie was born 16 years ago.)
Charlie has a lovely new maroon bike!
We picked it up after a ride on the Jersey horse country trail was cut short on realizing Charlie's beloved, beat-up black bike had a front wheel flat. Charlie and Jim had picked out the new bike earlier in the week and we stood in the bike store (which smelled agreeably of rubber and oil) as Jim purchased it and also a new front tire.
Following several no's, Charlie sat on the new bike for about 11 seconds. Then off and back to his old, own bike.
I anticipate the usual slow process to him accommodating to anything new.
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.
Since last Monday we had a not happy trip to the beach (Charlie didn't want to ride, an entire soda was pitched into the front seat on the ride back and other things), I thought it well to note that, though a trip 'down the shore' Sunday morning yielded 'but' a ride of 4 miles (Charlie doesn't care to ride in too much wind), a pleasant time was had by all. He and Jim are out doing a local 7-miler now and it's about 20 degrees warmer than Saturday morning's 18 degrees F when they did a 1-minute ride in Jersey horse country.
2012; Charlie turned 15 and it was a very good year though given the two ER visits for stitches in the back of his head; instances of head-banging-inflicted property damage (same neighbor's tan car twice, same spot on the trunk; two different cars belonging to the same family); three tree trunks and the pole at school that were sites of similar; a call to the police; a new gallery of holes in the walls; the thumbnail Jim lost and the long sleeves and pants I taught in through the hottest fall days rather than field questions such as 'what happened to your leg, Dr. Chew?" -- given all this, it was the usual epic tale we have been honored and lucky to live with our boy.
4,000 - 5,000 miles were biked by Jim and Charlie and some couple/several hundred walked, sprinted, dashed and run by Charlie and me and/or Jim.
There were not a lot of hours slept in spring, summer and the start of the fall (so we were both 'night owls' and 'larks' for quite awhile).
Charlie's neurologist opened an office in north Jersey, I had a long consultation with him and another neurologist and a nurse just before Hurricane Sandy and the possibility of Charlie having long-term gastrointestinal distress was revisited, acted upon with a reworking of Charlie's diet (sushi begone! Fuji apples by the bushel!) and a bevy of over-the-counter medicaments, and is currently being investigated. No, we are not going DAN-ish -- this is the same neurologist who prescribes the four medications Charlie takes plus the fifth for emergencies.
We have been getting a fairly routine amount of sleep though not tonight, this last day and hour of 2012. Charlie has had a great winter break with a quite high amount of bike riding in cold weather every day; he has one more day off before returning to school so it is anticipation-anxiety time and there's the sound of noisemakers, rockets, better not be rifles, in our neighborhood, not to mention a longer than usual full moon. It's a recipe for no, or at best fitful, sleep.
It's all right.
No incident reports were sent home from school till three came in the space of one week, after Hurricane Sandy and a pack of Swedish fish.
It's been a full year of extremes and elemental experiences.
Sunday, December 30, we made a second trip to the ocean and encountered far less snowy roads but 45 mph wind that meant for a very short bike ride prior to which the white car was splattered with salt water spray.
Monday, New Year's Eve day, we went to the place Charlie has asked most to go on this break, the Jersey horse country trail.
He and Jim did not ride much on the trail because it is snowy, icy and inviting to cross country skiers.
They headed for the street instead.
Clear though with icy patches and minimal traffic (the horses were on the trail).
They did a solid nine miles uphill in just above 0 degrees Celsius temperatures.
Needless to say, Jim teaching Charlie to ride ranks as one of the Best Things Ever, in any year, decade, century, era, millennium, etc..
Afterwards, Charlie said no to his customary post-bike burrito and very much enjoyed some shrimp chow fun (he had the fortune cookie first) and a drive by the house he knew as 'Grandpa Grandma's.'
Through to be honest, Charlie called it 'Gramma Gramma house' because when he was younger he couldn't quite work in the "p" sound and the pronunciation stuck.
Just glad that we're all still together; that we stick together,
Wishing everyone some excellent adventures in the new year and thank you, thank you, for sticking with us and reading Charlie's story. Knowing you are all out there -- it means a lot.
Clearly this is turning into another of those bike odyssey vacations -- Friday, Charlie in-sisted that he and Jim do the full 16 miles of the Jersey horse country bike trail -- around-freezing temperatures, icy bike paths occasioning slippage and taking to the streets, mud, grit, another snowstorm on the way be d***ed.
We seek out nary a cardio-workout or extreme adventure experience. We just have them.
Of course the day we made it back to the beach (I think it has been almost a year's hiatus?), Charlie excited and tentative but not overwrought, it was after a lesser nor'easter and it was flooded so, after riding several miles south in a wind blowing at perpendicular angles, Jim pedaled and Charlie waded through knee-high water amid ocean debris and it was time to get in the white car and stop at a CVS for dry socks.
Well, it is the end of December and some of the beach's streets are still caked in sand from Hurricane Sandy.
It was no less a good feeling that we had gotten back. We wrapped it up with a short visit (lots of talking, Charlie tugged and tugged at Jim's hand) in the evening to our town's community center, where the author of a book on "the postmaster" was to speak; Jim knows her from his days of research on the waterfront.
Charlie insisted on a Jersey horse country bike on Christmas Day. We were hesitant after Sunday and he was tired after not sleeping most of the night. After being convinced to rest for two hours in the brown chair, we acceded and he and Jim rode in mountaineering conditions (snow, mud, grit, fallen trees) for twelve miles that felt like twice as much. Then we drove a ways to the one McDonald's on the Garden State Parkway that was definitely open.
It was a good coda to Sunday.
It's the day after Christmas and Charlie wants to go out there again -- to do the whole trail? Or the rage for order settling in.
On Friday (21.12.12), Jim mailed off half the holiday presents (I'm still packing the rest) and exams are all graded though not all grades posted as some more papers may be submitted, though paper-writing, and therefore paper-grading, have drastically changed courtesy of the internet. It was more of an exhausting, perhaps exhilarating, semester than usual not only because of extreme weather events but as all aspects of humanity came to the surface in my early morning Elementary Latin class in particular.
I was still proctoring an exam/enjoining students to f-o-c-u-s and finish writing about Herodotus' and Thucydides' views on causation and evidence when Charlie came home due to having a half-day. He has been extremely wary of getting on his bike after the brakes were fixed and a new axle installed on the rear wheel on Tuesday (he and I had to pick up the bike at the bike shop on Tuesday evening as Jim had an important meeting to attend and seeing the bike come out of the store instead of the shed probably weirded Charlie out). Wednesday there was a ride in twilight, Thursday Charlie preferred not too -- I think he could also feel that our latest storm Draco was due to hit -- and he kept giving me looks in the evening that (along with the word tickle which has come to mean 'go to a different level of the house for something) I divined meant I should get the swim bag.
Charlie's school swims about once every quarter, 3 times in a row. Only this time (maybe because of the hurricane?), they only swam twice and will have one more swim day in January. But Charlie knows they swim 3 weeks in a row so on Thursday he wanted, and did, put on his swimsuit and on Friday, with a fleece vest over his sweatshirt, he boarded the bus with the swimsuit on and his swim bag packed with a towel and long pants. Apparently there was not an issue about this at school as no mention of such was made.
These past weeks, he's been showing some tiny bits of such order-ful awareness.
On a walk on Tuesday, Charlie bent over to toss a tree branch out of the path, instead of stepping on, over or around it.
Some nicely articulated two-word echolalic utterances have also been heard (so I've been informed 'bye sweetie').
Last weekend, too, Charlie kept looking at me after we had gotten back from a rainy ride and said 'purple' and looked at me: He wanted his daily dose of one of his stomach-comforting meds.
Understanding cause and effect: Scientific thinking.
There are times when you don't need a yellow jacket (Saturday, Bayonne waterfront).
Realities (rain, damp, dirt, gravel, general muck, waning hours of daylight as we approach the solstice) being what they are, there are times (the morning after) when you realize a purchase was the Best. One. Ever.
45 mile weekend; 50 miles including walks.
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