We Go With Him

It Was Another Perfectly Imperfect, Imperfectly Perfect Year

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.

Weather Builds Character

Wonderful Winter Break in Various New Jersey Counties Continues

 

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.

 

Windblown and Watery But Not Winded

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.

 

A Historic Occurrence

 

I guess a talky Hollywood historical drama might not be the obvious choice for a boy whose school curriculum does not include social studies and who has not yet ever read a history book and who needs lots of time to process words but, based on the four flashy, loud, explosion and glitz-filed trailers he saw before seeing a whole 20 minutes of Lincoln, it was not a bad choice on a slushy, snowy cold evening after Christmas Day.

It was the first time Charlie has been to the movies in about three years. A showing of Kung Fu Panda made him very queasy. The lights, smells, sounds of the cinema were just no longer right and certainly not entertaining, nor fun.

It was the first time Jim has been to the movies with Charlie and the first for all three of us.

 

Take Two

 

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.

 

One Good Read Deserves Another

 

Merry Christmas if that is what you celebrate in these ecumenical times! -- Charlie having soundly conked out in the middle of the day after the 50-whatever miles from the weekend, three fight-or-flight runs on Sunday and four walks at a more normalized pace, one walk and a brisk winter's day ride Monday -- he is grinning over our all-time favorite reading of the Gingerbread Boy (via the Teletubbies) on his iPad and I'm reading quarters, eighths and paragraphs of reviews on the London Review of Books site as I don't have a subscription, all to get ready (without really trying to) to enter the different world of the Romans, Carthago, Pontus on the Euxine Sea, Alexandria, come spring semester 2013.

It snowed but not much and only stuck to the grass and sidewalk and not the street.

After the morning bike ride we purchased a fair amount of better-quality fast food including some pizza from the newest pizza place in our modest Jersey town. Jim dubbed it fair and his opinion shall stand as we are perhaps the rare American household in which pizza eaters are a minority. (In Charlie's case, another side effect of years eating gluten-free and casein-free; soy rice crust pizzas were presented and turned down by all.)

Charlie and Jim did a second bike ride in mid-afternoon and definitely needed their bike lights.

I arranged a pile of gifts on what used to be the TV stand, topping it off with the latest set of 'first readers' we have gotten for Charlie. I haven't yet felt it was the right, fleeting moment to read one to him! A goal during this week-plus of break, clearly.

There was a lot of lounging, sorely needed by Jim as he'd accompanied Charlie on every wheel turn and foot run of Sunday and by Charlie himself too though, due to that deep nap, he is wide awake at 2.15 am and, from the sounds of things, not unhappy.

Me (with a veritable pile of reading, actual paper kind) either.

 

Agitation Sunday

These photos suggest it was just another Sunday bike ride on the Jersey horse country trail.

But in reality (what the pictures don't tell), the 16 miles was more of an impressive feat than usual as Charlie had spent the previous evening unable to sleep and broadcasting agitation by deleting all the music from his iPad and then, after it was restored, listening to agitation-signaling music (including Arcade Fire); had coughed and yelled "Rocco Portia" numerous times in the car en route to the bike trail; somehow made contact with a plate when a woman at the general store put out her arm holding such and it broke -- evoking a bad memory when, around two years ago, Charlie had once run into the same store and grabbed a plate behind the counter and thrown it; barely touched the cake in the car; gone running at top speed as soon as the car door opened, Jim at his heels; twice jumped from his bike on the trail and ran. Jim was always right there for him.

It's winter, and Charlie has over a week off from school (he quite knows and said "no school tomorrow" as we passed the area where his school is on the way back home from the bike ride), and we are spending the holiday as a threesome.

At home, Charlie watched me mix the batter for sugar cookies and requested a local bike ride, which proceeded without incident.

Very proud of this boy.

 

Causation

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.

Why I Prefer to Say 'Challenging Behaviors'

In the context of having dealt quite often with a teenage boy in crisis and liable to self-harm and to other difficult things stemming from what appears to be a combination of extreme anxiety, very little verbal language and what is shaping up to be a chronic gastroinestinal issue, I am thinking of why I prefer, have preferred, shall use, the term 'challenging behavior.'

The terrible events in Connecticut have brought the words 'autism' and 'violent' together very often. The premeditated, social violence under discussion has nothing to do with autism.

Many others have already said what needs to be said; here's my take.

The challenging behaviors' that Charlie has had, can have -- head-banging, biting, grabbing, pounding heavy objects into the wall, smashing glass -- are of the sort that are called 'violent.' Another word professionals, experts, etc., often use is 'aggressive.'

Last week makes it clear to me, I'm sticking with 'challenging.' Charlie's difficult, difficultest times are a maelstrom of distress and physicality. Much of his challenging behavior is directed on himself, resulting in the carbunclish excrescence in the middle of his forehead.

It is the case, after a period a few years ago in which he routinely swiped dishes from cabinets and the dishrack from the kitchen counter, I got rid of the big Chinese cleaver and the chef's knife and stowed away the paring knives. Plastic remains.

It's not that anything with a sharp edge was ever thrown but it's just better to exercise 'safety first.' Truly, Charlie does not know that a knife can be used for anything but cutting gluten-free waffles (because he was eating a lot of those at the time we tried to show him how to use a knife; it was too much of a fine motor challenge) and vegetables and fruit. 

Charlie is not able to read any of the 20 'sight' words and the 100 'snap' words on this list of what first graders know.

Charlie does not know how to get onto the internet and if he did, he'd want me to tell him what to look at (I'd choose photos of a place we've been, like Liberty State Park in Jersey City; he might request the usual Teletubbies, Wiggles, Barney).

Charlie does not know what a gun is or what it is used for.