We Go With Him

Fable of the Still Broken Washing Machine

In the great scheme of things, us being in a state of washing-machine-less-ness for something over a month (the repairman came a week and a half ago only to discover that the most important part had not been sent though plenty of other big boxes with other parts had, leading me to make, a few days later, what was the probably the first-ever attempt to explain the Emperor Augustus' struggle, or failure, to find an heir he truly wanted via a comparison to one New Jersey classicist mother's attempts to get a major household appliance fixed) -- this is not a big deal. 

Though of course the county government would choose the upcoming week to close the street the laundromat and my favored local supermarket (where some of the clerks remember when I used to bring Charlie to shop, before the incident of the red brownie box, and still ask how's he doing) are on for major repairs.

Still recovering from last week's emotions and storms worrying and enduring Dadless Wednesdays and from staying up all night from Friday till Saturday morning, Charlie slept till nearly noon on Sunday. He called for a long local bike ride and Jim readily acceded. Usually I've been waiting till Charlie's back at school on Monday to head to the laundromat but I thought I'd venture over. While the mega-sized machine was starting rinse no. 2, Jim texted me that they had cut the ride short and were home and where was I?.

I was just leaving the bagel store. I'd found a certain worker -- who once held onto Charlie when he had a severe neurological storm as he and I were waiting in line; it was a tight space, redolent with smells and people and the worker jumped to help us as if on instinct -- wearily cleaning out the plastic display case that usuallly contains the crumb cakes and muffins. I paused as he seemed very busy then realized he was waiting for me to give him my bagel order. As he filled a bag with everythings and whole wheat everythings, I said thank you and then (I felt I had to say something), "you're closing soon?"

"In an hour. But the last hour is the longest."

"Yes," I said.

Another man who was chopping celery behind him laughed. The worker rang up my bagels and said over his shoulder, "If you were doing what I was doing [gesturing to the crumby plastic display case], you'd say so."

I thanked him again, he nodded, I hurried home, left Jim and Charlie delving into the bagels, and went back for the laundry. 

Afterwards Charlie and I did our five-plus mile walk under a bright blue sky and it was with the same that he and Jim rode off a bit later from the park in Bayonne by the bay and just beyond the Turnpike bridge. Charlie was smiling broadly, not only at the prospect of the ride and the sunshine and the Vietnamese food we always get him afterwards. On the ride in, he'd been in the grip of his anxieties: We pass the airport on the way and he couldn't stop insisting we go there and get my mom and dad. They're due to come in a month and, it seems, Charlie has started with his usual pre-Gong Gong Po Po visit anxiety.

Leaving me thinking, maybe it'd be best not to drive with him by the airport more than necessary, for the nonce. And that, while's it's often noted that those on the spectrum struggle with executive functioning, Charlie has a very well-developed capacity in this area: He's already planning both driving routes and his anticipated emotions quite a bit of time ahead of my parents' visit.

Working his way successfully through so many feelings gave Charlie a boost, I sould say. It was a great ride in Bayonne and Jersey City, even with a surprise ending.

Jim and Charlie like to meet me in Liberty State Park, against the backdrop of lower Manhattan and the rising Freedom Tower. I was waiting there but a police loudspeaker blared out that The Park Was Closed As In Right Now. A nearby parking lot for the light rail station was blocked off (by police cars with flashing lights) so I waited for Jim and Charlie on a side street. Charlie grinned as he rode up behind Jim.

Sometimes the unexpected can be a bit easier for Charlie to navigate through. Perhaps because, he doesn't have to worry about pacing himself through that last longest hour, waiting for things to be fixed and set right and orderly again.

 

A Big Wind Clears the Sky

 

That's a view of the Meadowlands from the NJ Turnpike going south, around noon on a morning when the wind was so strong Jim and Charlie did a shortcut local ride.

The Meadowlands, despite their name, have the reputation of being industrial Jersey wasteland. That is the case but we (Charlie too by his serious looks out the window) like the vistas, of brown reeds, river waters, iron and steel structures, highways criscrossing each other, Manhattan glittering in Oz fashion to the east, Newark stolidly sitting westward, streams of smoke from a smokestack, always cars.

We've stayed local the whole long weekend. Charlie conked out and could not be woken Friday and Saturday afternoons and slept not at all in the nights. Sunday morning he lay down for a few hours on the blue couch, waking at 11 and immediately calling for his bike.

After a chilly post-dinner walk, Charlie had a disturbance, if I may call it that, reminding me of his distress on a previous night. He ended up back on the couch and as we've discovered, as of Saturday night, that he seems cheered to hear my parents' voices on the phone (after years of pushing it away, as if hearing voices without bodies was too much to deal with), I turned on FaceTime on the iPad and gave my arm a good ache holding the device at Charlie's eye level, so he could see my parents and they him.

Then he went to sleep on the couch, woke after two hours and went up to bed, turned on music from Wiggles to Pixies, fell back asleep before 11pm and the house creaked and settled in the wind.

A Short and Sweet One

After starting his Wednesday shortly after midnight, Charlie got up for the bus at 7.15 am (after a 6.30am walk) and was asleep when it arrived. He had a good day (it's been that kind of week). We walked twice and, after getting a burrito from his favored place, we enjoyed a grand view of the Manhattan skyland from the Meadowlands. We walked twice more and, shortly after start a round of calling for Dad! Dad!, he fell asleep on the blue couch, no melatonin required.

The photo is from a weekend beach trip that led to Charlie's first 17 mile bike ride in a while and after a tough moment, and I'm glad I saved it to post on Valentine's Day.

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.

 

Two Weeks After the Hurricane in Jersey City

It was a beautiful warm November day and Charlie and Jim had a lovely bike ride in the morning and looked forward to a long one in Liberty State Park to Bayonne.

After dutifully waiting two hours after lunch, Charlie jumped to load up the car with bikes and helmets and the bike pump. Then we discovered that he was visibly sweating and fevery.

He insisted on going and we went, guardedly, to Jersey City to find the park closed and a police officer directing people (except for boat owners, perhaps to view their damaged property -- ships shorn of their masts?) to turn around. Charlie said NO to start biking in the parking lot where I'd met him and Jim on a ride two weeks ago, as the hurricane was coming.

We saw more of Sandy's effects as we drove through the city. The metal door of Charlie's favorite Vietnamese restaurant was pulled down (though the psychic on the second floor was still in operation). We got him something from what I call the "industrial strength" Vietnamese restaurant (for one thing, it is quite a bit cheaper) and headed home. Charlie dozed fitfully.

He woke at home and ate a little and, though yawning, would not sleep. Then he was in extreme agitation for two hours. He worked it through, asking repeatedly to get a burrito, a sign of more intense stomach distress, we have reason to suspect (not so much from the different food; his stomach had not been cooperating, so to speak, all weekend).

We went on an evening walk and Charlie went to the basement and brought up some photos of him as a toddler, sorting through to put the ones of himself and Barney on top. "It's little Charlie!" I said. "Little Charlie," said Charlie. We tend to make a bit of a deal about how Charlie is now a "big boy" (as he is). I said, "you're still little Charlie. Always little Charlie." That brought some pleased swaying back and forth on the feet and also a pleased expression.

His forehead and hands cool, Charlie went to bed to the (familiar, and liked by all of us) sound of ocean waves.

 

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.

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.

 

Craziness, Normalcy, Irony, Water

With no familiar haunts (school, fast food Mexican place) open -- I mean, it could be plenty worse, some 2 million people in New Jersey have no power and many stood in line for hours to fill gas cans to fuel generators:

(this picture was taken at a gas station 5 minutes from our house) -- Charlie, and we with him, gutted out Wednesday. We got the 'obviously crazy / completely for us normal' idea of driving to a central Jersey town where another Mexican fast food chain had a restaurant that was open, encountering 100+ car lines at gas stations that blocked traffic and more downed trees and non-working traffic lights than you could shake a leafy twig at.

But if you want irony, or ways to reflect on want you once were and who you are now, nothing beats buying two of the same vegetarian burritos and one chicken one and random other items in a Mexican fast food place where people are charging cell phones in the restroom and snarling at their very orderly half-Asian American twin daughters who must have no school like Charlie but can be told to sit at a table by themselves so their parents can get a little peace and quiet -- all right across the street from the beloved library where I used to spend evenings and weekend afternoons reading books and journals on Ancient Greek and Latin poetry and wondering how I could always make sure I would do just that.

Charlie was wary of the strange burrito but ate some; Jim, after driving for some hours (really -- detours everywhere due to fallen trees) was less so!

I'm sure driving around so much was not the wisest thing to do what with the limited number of gas stations open. Charlie was very nervous all day, his eyes sort of bugging out with a certain franticness. Trying to assuage his anxiety being Our Only Goal In Dealing With Natural and Any Disasters and Fracas, we actually did another ride that became way too long in the evening, finding ourselves unable to turn around (blocked turnabouts were rife) on a state road that was only lit by the lights of other motorists, as the power west of us (the direction of Charlie's school) seems to be quite out.

We made it home and Charlie downed the white rice I had cooked before leaving and a lot of crackers and some apples and ended up smiling at me as he typed on his iPad. He had been awake around 6am, ran down the stairs at 6.50am in perfect timing to catch the bus, had there been one; he was asleep by 9.30pm.

Well.Jersey City is now under a lockdown from 7pm till 7am, the National Guard drove humvees through the sewage-watery streets of Hoboken, and the beach island (that Charlie so loves that we had to stop visiting it this past year because it was too hard to come and go) is a mass of sand piles, broken boardwalks and beach houses, and a roller coaster in the ocean. This is a common scene in our town and throughout New Jersey.

But the point is, we made it through another day together.

Clearly We Lead a Charmed Life

After a bike ride, we went to see if the Mexican fast food place was open and were not surprised that it was not due to having, like every business and residence near it for miles on miles, no power. Having found ourselves all off from school / work, Jim drove down the local state road onto the interstate and thence to another local state road. Every signal light except for one at a major intersection was out. Everything was closed aside from some grocery stores whose dim lights said they were powered by generators.

We saw billboards on their sides, trees at every angle and occasional bits of buildings on the ground.

There was a line at the one open gas station reaching into the road way, with many people wielding gas cans so they could fuel their generators. A few stores in one area had lights on and then everything was dark.

We drove further and everything was dark so we drove back north to stop at the one lit-up McDonald's. Charlie had been smiling the entire time and kept it up throughout the adventure which involved dropping me off to stand in a line along with about 100 other people at the McDonald's, Charlie and Jim coming in to wait for a bit and Charlie gaining the attention of all when he said loudly 'Gong Gong PoPo Rocco!', us responding cheerily, Jim and Charlie back in the car circling the parking lot 4 times and Home Depot once and then hanging in the parked car listening to a somber Phil Schaap on the Art Blakely birthday broadcast. I remained in the slow-moving line, appreciating the politeness and patience of everyone in it and the very busy workers and the people who seemed to be in McDonald's only to charge electronics and use the WiFi.

Everyone in the line had the same story: No power. People were walking out with shopping bags full of McDonald's.

(Proof that McDonald's will be the last bastion of civilization when the apocalypse really comes?)

(Well, maybe, at least in New Jersey.)

We live smack in the middle of the zone that news outlets report as having no electricity. Why we have ours, as do residents of some part of our street but not others, is clearly an indication that we lead a charmed existence and I continue to plug in Charlie's iPad every moment he's not using it.

Finding ourselves in endless lines waiting for non-essential but in our view essential items is the stuff of our life (and has been for years with Charlie) so, unlike most of the people around me, I saw no reason to wonder why I was standing in such a line. The long wait was just one of those things we do.

Even more, living through a 'natural disaster,' while certainly not routine, has a bit of a familiar feel living as we do ever in the knowledge that Charlie could have 'the big one,' an extreme behavior storm touching down at any moment of the day and night.

He was cheery when I finally walked to the car with some extra hamburgers and a free French fry the young female worker had given us for no particular reason and ate it all up. He looked out the windows as Jim drove and went to his room, showered, wanted a second walk.

I used sometimes to call just after 5pm 'the witching hour' and it remains such. The need for that habitual burrito set in and Charlie was in its grip. We looked up every Mexican restaurant in the northern half of New Jersey and called them and got no answer. We gently noted how lucky we were to have lights on and Internet, all the more as Jim and I read about houses burnt to the ground and the wreck of the beach island that (until Charlie became such a great ocean swimmer that we could not keep up with him) we spent many summer days at -- Jim showed me image after image of boats in a pile, the ocean in the streets, beach houses flung from their foundations atop other beach houses.

Charlie stood, sat in his brown chair, stood and listened to us saying very gently that things were 'closed' and you could tell from his face he was trying to gut it out and he sat in his chair and burst into tears with the effort and stood up. I intervened and his requests, which were about his obsessive anxiety, petered out -- obviously understandable! his school is closed on Wednesday and I anticipate it will be all week; the so to speak good thing is, Jim's and my schools / places of employment are shut down too. They're pumping out water from the subway tunnels and the mayor of Jersey City, 75 percent of whose residents have no power, has said that non-essential vehicles are not allowed and I don't know if he would buy our story that getting Charlie Vietnamese food means it is essential for us to be on Jersey City roadways!

Charlie went to his room and came down and, while I put his blanket in the dryer, we all went for a walk. It was dark at that point and the street where all the houses are dark except for those from which dim light and the burr of generators were apparent was uncanny to be on, as was it to pass the darkened house of Nemesis Dog whose majestic pine tree's trunk had snapped so its fulsome branches were bundled on the ground.

We got home and Charlie ate rice, shrimp and apples with a chaser of crackers and listened to iPad music for a long time while sitting on his bed. He looked uneasy while intermittently smiling. Jim went to check on him and then came down with the blue blanket which I rinsed out and stuck in the dryer and returned, hot and dry, to a happy boy who gradually settled down to sleep.

I can charge the iPad in the car but not the dryer!

Yes, we live a charmed life.

Storm Outside Not Inside

Aside from continually checking the charge on Charlie's iPad and my phone lest we lose electricity, and iterating and reiterating what a great boy he was and how we were spending a very challenging day together, here's what we did the day Cyclone Sandy hit.

Charlie and I went for a morning walk after I'd done a morning run that enabled me to realize, storm or not, our town was picking up the leaf piles so I moved the black car into the driveway just in time. (You can still see a pile of leaves in the photo because some people had put their leaves on the sidewalk to keep them away from storm drains and those leaves were not picked up.)

We were the first customers at the burrito place (they weren't really surprised, haha) and then went on another walk.

Then the tropical stormesque aspects of Sandy became apparent (high and blustery strong winds, rain though not as much as from Hurricane Irene, flickering lights, a fire engine and police showing up for a possible power line fire up the street) and we had to stay inside. Charlie was something less than thrilled about this with his non-thrilledness peaking around 5pm, but he got over the hump, with some intervention. In as non-alarmist a way as possible, we mentioned that there was a curfew imposed by the police till 7am. And then we all had to agree, we were having a great day and a fun one. Together.

It was like being in a storm at the beach with the house rattling and creaking, the winds roaring and the rain splatting down. Charlie went to sleep.

The subway isn't supposed to open till Wednesday at the earliest and City Hall in Jersey City is surrounded by water so who knows what will happen the rest of this week -- well, maybe not as much trick or treating as planned.

(No worry there to us: Charlie said "done" long ago to Halloween and he is probably the one or two children in the cosmos who does not eat any candy and I mean any.)