We Go With Him

Climate Change and Autism

No, I do not mean to imply that climate change causes autism.

Climage change is real, autism is real and the temperature (with barometric pressure rising or dropping in full force) going up by some 20 degrees then down shortly thereafter, is a little harsh and if you're not one for transitions of any sort, it can all be really a lot to handle.

Wearing shorts instead of long pants is one such irksome transition for Charlie. Usually we try to wait until it is totally clear that warm(er) days are here to stay so he doesn't find himself with bare lower legs in an ice storm. For Charlie, summer temps in early April are not occasion to say 'yay, shorts work today' but to sweat it out on the daily round of bike rides and walks.

That is, what you see him wearing in the above photo taken a few days ago when it was a coolish, very pleasant spring day, was also what he was wearing on an overly fast, muggy hot, mostly run-not-walk exercise fest on Monday night.

And also on a briskly paced walk with very contained running Wednesday night in rain and as the sky flashed suddenly with lightning streaks.

It's cooling off here now, slowly. Apologies to the environment! but we have been turning on the air conditioning, the better to make the climate within comfortable, and comforting.  

In Which the White Car Is Not the Desired Object

Anywhere from 4 - 6am seems to be about the term Charlie has been waking up this week and it was so today. He got dressed (in his swimsuit, as that's scheduled at his school) and gave me an expectant look and I said 'walk.' He changed into his long pants and out we went in the snow.

We passed two boxers and their owner and noted that it was not so cold and there was light trying to emanate from the sky. We neared our driveway and Charlie said 'white car.'

Immediately I thought that he wanted the car and wouldn't be thrilled about the school bus, due to arrive in a half-hour. We went inside and Jim informed us that parts of Liberty State Park are open! and gave Charlie a hug. We mentioned the bus. Charlie still looked rather grim.

I handed Charlie his swimsuit and his face lightened up (a bit). Yes, there's school, we assured him. I went in the kitchen and started spooning some rice into the container that goes in his lunchbox and he was very cheerful.

From then on till we saw him grinning at us from his seat on the right side at the back of the bus (with a driver honking in the car behind, evidently not thrilled they could not zip around and speed away), Charlie was peaceful easy. Snow days don't have to mean anything's disrupted.

Snow Walks

Did 5 of the above yesterday, post-Nemo. Also a lot of driving around and rather a lot of sleeping and eating (what you're supposed to on a snowy day, that is.)

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.

Best. Purchase. Ever.

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. 

Lag and How Charlie Sought to Work It Through

 

I taught my classes, with a good majority of students in attendance, for the first time in around two weeks on Friday. Everyone had a story about the storm or rather its aftermath and none of it was of the cozy, hot chocolate over flashlights sort. 'Flooding,' 'pumping,' 'no power,' 'no food,' 'ruined,' 'lines' and 'war zone' were frequent expressions. The storm's aftermath is ongoing and (after a nor'easter's snow and cold too) everyone was weary, with a vague unease that discomfort and outages were not at all over.

Though Charlie was back to school this week, things were far more disrupted than the previous one when the three of us had worked through long days at home together. There were four days of school, there was no bus till Friday, and Charlie's teacher was not there on Friday (he's getting married!). There was the snow on Wednesday. There was a very odd early morning ride to Jersey City on Thursday morning to retrieve the black car which Jim, contending with the current lack of public transit into New York, had left overnight in the armory parking lot near my school. There is the fact that the black car had been missing from its characteristic spot in front of the house as Jim has been taking it to a different train station than our town's in the interest of getting on a train. There is the bucking of the black car, a portent of something internal being out of whack.

There was a little signal Charlie was feeling 'otherly' about things when, Thursday night after he'd been hanging around in the kitchen, I found the tarnished pot (that I've long used to cook rice, vegetables and such, and that Charlie used to hurl across the kitchen when he was hurling around most of the contents of the cabinets and breaking a few coffee makers) in the garbage. 'The pot's in the garbage,' I said and Charlie who grinned and then was grim.

Around 1pm at school on Friday Charlie was in crisis, much more intensely than he has been all school year so far. The principal called me as a student and I were going over Greek -μι verbs. It sounded like Charlie says not in a state to get on the school bus home but the principal and I wondered if, giving him some time, he might work it through. We finished class hastily, I called Jim in his office, and the principal called me just as I was getting in my car to say Charlie was back to sitting at his desk with an aide he's very familiar with and singing Beatles songs, and they thought it would be better if he could take the bus as me picking him up would just be more of the disruptions, the not-normal, of earlier this week and all last week.

Charlie made it home on the bus. The school is really keeping the faith in him.

Jim was soon home, there was a bike ride and the rest of the day unrolled in the usual way, with a fine evening walk, and Charlie went to sleep around 9pm only to wake four hours later. Stomach, possibly, from seeing it distended and from assessing there's about ten days till my parents arrive and there are more disruptions, not to mention the upcoming holidays (Thanksgiving very soon) and breaks from school. I got him to drink some water and some other things to soothe his stomach (especially after a stint of manic, pounding running) and Charlie listened to music for a while before turning on the ocean waves. He's still walking back and forth through the house but looks a little more at ease and I'm back to working my way through a paragraph of Thucydides' prose.

The pot, by the way, went out with the trash this afternoon.

 

All Cosmic Things Considered

I wrote in a note to Charlie's teacher that Wednesday (after lunch in particular) he might be distempered with stomach discomfort due to just a few known factors.

Eating a ton the afternoon and night before.

Transition back to school after six days off.

This disruption called 'Sandy.'

Drop in the barometric pressure due to a nor'easter.

On edge parents watching the election results Tuesday night.

Jim gone till at least 10pm, probably longer, teaching and navigating the brave new world of reduced service on NJ Transit, the PATH, etc..

No school bus because our town's school district is yet closed (they got the two huge generators and one froze as they tried to install it but it was already sleeting).

The weirdness of me driving him to school

Probably something else I've no idea about.

Around 2pm, things got the better of Charlie (calling 'schoolbus schoolbus') so he had a very large bandaid on his forehead when he walked out with his teacher and two aides. 'Understandable' was the word and I emphasized this was incident #1 of the weather craziness.

Charlie was very nervous on the way home in the sleet and snow but he made it on a more arduous trip than usual (it included a fuel truck backing up towards us due to a road closure; well, we do need the fuel). As the afternoon progressed, the snow came down thickly, Charlie felt far better (I got him to drink quite a bit of water, for one thing), and we waited out the evening grateful to be in a warm, bright well-provisioned house as thousands of people are sitting through this storm without electricity, including friends and staff we talked to at Charlie's school.

By 8.30pm, Charlie was asleep. A bit afterwards, his school's automated alert system said there's a delayed opening which quite makes sense given the conditions out there.

 

Focus on the Essential

 

With the countdown towards 'school Monday' fully in operation, it emerged on Saturday that I am not allowed into the kitchen except under the eagle eye surveillance of Charlie who is keeping watch lest I move his lunchboxes, the veritable sign that there is school tomorrow.

His anticipatory complex at work in full force, Charlie was in angst (Jim's phrase) all day. At the start of each of three bike rides, he paused after every round of pushing the pedals to glance back at me to make sure I wasn't doing anything I oughtn't. (He didn't do this on a walk as he knew he had me trodding at his back.)

As we all waded through the hours, we only felt more grateful at the past week together. Many friends just got power back on Saturday, or saw their lights flicker on and then go off, or are waiting till sometime next week. Though Charlie's school is opening Monday, the schools in our town are not as some remains cold and dark. My own school opens for classes Tuesday though I suspect, many of our students being commuters, there will be empty seats aplenty and a deep lack of focus with the end of the semester fast approaching.

At the grocery store, I sensed a deep and enduring stress in people, lingering extra long in front of the bagel case and scanning the shelves intensely. The clerk was very surprised when I took out some cash and didn't object to the big bill he said was all he had.

Money's money! I wanted to say.

In the afternoon, Jim sawed the big branch that fell beside our backyard shed into pieces. The neighbors have been gathering up leaves and branches and chain sawing away all week. All of our energies have been directed in one direction, to getting Charlie peaceably through each day; on what's essential.

Yawning in his brown chair, Charlie stayed up till I had finished a bowl of rice and vegetables for dinner. He stood behind me as I did the dishes and it occurred to me, he'd kept his vigil because he knew that I had to go back to the kitchen to wash the bowl and utensils, and he had to make sure about the lunchboxes.

He's thinking ahead.

Crisis and Catastrophe and Telos

 

The landscape has become a maze of unexpectedness, trees on their sides, power lines pinned by branches and telephone poles, darkness without the traffic signals and neon-lit signs that are ubiquitous in New Jersey when there isn't a natural disaster.

On Friday in the week of Superstorm Sandy, the power was out across Jersey horse country. Jim and Charlie found trees strewn all across the bike trail and every bridge washed out, so they rode on the road.

Other road ways, like the Garden State Parkway and various state roads, have been host to standstill traffic as long and longer lines of cars wait for gas. New Jersey's governor has decreed that, starting at noon on Saturday, gas is to be rationed. Even numbers on your license plate mean you can get gas on even-numbered days and vice versa for odd numbers.

Even and odd: The 70s and the gas crisis all over and due to our peregrinations throughout New Jersey to keep Charlie going, we will need to refuel on the next even day, Sunday.

Most people would probably not have done so much driving at a time of fuel shortages. But our priority is to take care of our boy throughout a week bereft of any familiarity.

It takes a lot of energy to be free-floating in such disarray, especially if you're a boy who is reliant on a tightly wound routine. After a second bike ride and black car ride with Jim and a Bill Evans CD to see if his favorite burrito place was open (it wasn't), Charlie fell asleep at 7pm.

At 8pm, the Big Autism Center called: It will be open Monday.

Charlie woke at midnight and we gave him the news and he's talked some after a lot of quiet these past few days, smiled some and ran his paces in the L through the kitchen, dining room and living room. 'School Monday' means there is a telos.

Jim urged Charlie to sit in his brown chair.

Amid reminders of how fabulously he has endured the past week, I started to read Thucydides' account of the Peloponnesian War.

After 15 minutes, Charlie said 'bedtime' and went back to his room.

I actually rather dread to read about the Peloponnesian War knowing the defeats and deaths and plague Athens will suffer, of Thucydides' own 20-year exile from Athens after losing the city of Amphipolis to the Spartan general Brasidas.

But then, if I've learned anything from the past decade and a half, it is that you can live on the brink of catastrophe every day, you can fall into it more than you like, you can survive things you would rather have not had to have known and navigate the next new day.

 

That 70s Feeling

We got that 70s feeiing, in the gas shortage sense, on Thursday.

With the white car running out, we took the black car, and saw this scene (sort of like Depression-era bread lines, except people then would have been wearing suits not sweats, Jim pointed out.)

I nervously insisted on getting in one line in a nearby town, only to realize the cars at that gas station were empty and parked in front of pumps to tell people it had no gas. I was set to wait in a line with over 100 people in front of me and one pump open when Jim and a nervous Charlie, back from a bike ride, urged me not to. I wanted to stay, Jim texted me of Charlie's rising anxiety for MOM and I went home.

Proclaiming that his hunter-gatherer mentality was in operation full-force, Jim took an increasingly anxious-at-the-everything-closed Charlie in the white car to scout, over my 'you're wasting precious gas driving around randomly' objections.

Jim texted me, 'the Hess is open!'

I rushed out in the black car, met them in a prearranged location (Walgreen's) and it took me a half-hour to get to the end of the line but I was ready for the two-hour wait in a line that was (as this particular gas station chain tends to be) better organized and efficient, and trustworthy, then the average Jersey gas station.

Such differences (among gas stations and gas lines) I, not being a native Jerseyan like Jim, always fumble at. My inner 'be nice' Asian American mentality kicked in when I let a BMW who was pulling out from a gym into the line. Silly gullible me assumed they just wanted to drive through, but (I'm sure to the annoyance of the man behind me whose driver's window had a plastic sheet taped over it) they didn't, HEY. But I was able to overcome my tendency to believe everything said to me (at least at first) by the authorities when I shrugged at a cop informing me I should know there might not be any gas left when I got to the front of the line. ABER NEIN, DANKE SCHÖN!

Anyways, I had come prepared, with my two coffee thermoses too and what Jim refers to as a 'nuts 'n' berries' vitamin-laced food bar.

I got home while Jim and Charlie were on another bike ride. I made several calls and found out that Charlie's favorite Mexican fast food chain had a location open further north, so off we went to a town next to the little town where both of Jim's parents grew up and the town were Jim's grandfather (on his mom's side) once lived on a farm (this town was where a trailer park flooded after a berm was breached; residents had to be evacuated).

This was a very common sight.

People were clearly waiting far longer than the measly two hours I had and on the highways, especially the Garden Parkway at the rest stop gas stations.

Exhausted by his efforts to hold himself together through all this unusual nerve-wracking activity (including Mom in the back seat), Charlie went to sleep with the ocean waves playing on his iPad at 7pm only to wake at 3.30am and come running frantically down the stairs to check on where his lunchboxes are (on the kitchen table -- let's just say, hope the Big Autism Center opens Monday; I'm not so sure). Jim explained about the power still being out and I said we'd all be together and Charlie went back to bed, to the sound of the waves.