We Go With Him

After the Storm and Into the Wind

 

The title has a metaphorical as well as a literal application, Charlie having had an 'attack' with throwing of multiple plastic items, hitting his head and grabbing my arm and containing it to that and then biking 17 miles with occasional coaxings from Jim, into a 5 mph wind.

He had woken calling for a certain Chinese restaurant that is laden with grandparents associations x 4. The food there is better than average but still greasy and, along with emotional matters, it's a bit much for Charlie to stomach (also meant literally and metaphorically).

Jim said Charlie pedaled without stopping in the sunshine and just traces of snow.

We Dwell In Paradoxcity

 

It would be a bit off the mark to say that a week in which one had to call 911 is a good one, but such is the case, with Charlie having had week-long string of good days at school, albeit with anxiety moments (Wednesday's severe panic? attack, which involved hyperventilating, being among these), all while much enjoying a visit from my parents. He and Jim did a steady 8 mile-bike ride in 28 degree weather down by the ocean this morning, their longest in such cold.

Autismland conundrumness.

 

Pleasure and Pain: The Box of Routine, the Beach Isn't the Same

When you're expecting to see this and this and this at the beach and you see (as we did on Saturday) this --

-- pretty much a pie of sand where a parking lot, a washroom and a path and a sea wall and a slope down to the beach where Charlie has gone since he was a few months old.

Sort of analogous to pausing over the ghost of the little guy in the face of the here and now.

Again and again, we've seen this new year bring change.

For one thing, more and more familiar 'establishments' have shut their doors after the hurricane.

For another, Charlie has seemed to be irked at the very routines and patterns he has boxed himself into. Things that had been his delight (the bike path in Jersey horse country) have evoked occasional instances of distress (ditching the bike and running four times on a Sunday morning ride).

I have long thought that Freud's pleasure-pain principle captures Charlie's experience of things, places and people he feels strongly about. His love for the beach and the ocean waves is equalled by his distress at leaving it. His delight at my parents' visits -- he enjoys their company, surely -- is fraught with dread as he worries over their arrival and departure and isn't sure what to make of the disruption to his routine from their visits.

At this point in his life, Charlie understands that he can't have what he wants all the time and 'has to wait' and delay gratification (in keeping with Freud's reality principle). But managing how he feels is a work in progress. Expressing how he feels, a quite huger one.

Kids like Charlie are so often thought of as all and mostly Id. At 15, Charlie has absorbed a lot of Superego and (since I've started with the Freud-speak, may as well keep going) his Ego is slugging its way out, not always in the most graceful, spotless of ways but (at this point in our lives) Jim can be very quick of foot on gritty bicycle paths and I am not half-bad at cleaning up messiness.

 

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.

 

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.)

 

Scrubbing It Out

After what was probably his fastest-ever 16-mile ride on the Jersey horse country bike path ever, Charlie came home and slept for three hours. When he woke up, he asked for a nearby town where there a McDonalds and, as we routinely do, we mentioned the McDonalds that we usually go to as it's 5 minutes from our house. Charlie at first said 'yes' then as we drove 'no' and then 'no home' staunchly. But he didn't say where he wanted to go (he's never regularly answered wh questions) and we came home.

Some tense moments followed which Charlie filled by pacing his room and listening to Arcade Fire'sThe Suburbs, Jim started grading papers and I started the long-waiting-for-me task of scrubbing the bathtub (with a wonderful new bristly brush -- it's the little things in life).

During this activity, it occurred to me that the nearby town's McDonalds is right next to an on-ramp for the Garden State Parkway which is, of course, the great way down to the Jersey Shore.

Charlie started smiling and ran down and wanted to make brownies (fortunately I had a box of mix stowed away -- yes, the red one).

 

Jesso, 'NO HOME,' Full Moon, 'JERSEY'

After Charlie slept from 8 -- 11 am on Saturday, he and Jim did 16 miles at a manic pace. Oddly, Charlie did not want his habitual burrito on the way home. He and I did a walk and then he and Jim did a 6 1/2 local bike ride. The mania seemed to be loosening and Charlie seemed more cheerful and at ease. Then we got him a burrito, per his request, for dinner and he demanded 'NO HOME' on the way back, but did not say where he wantd to go so we went home, observing the fullness of the moon, and he said 'YES HOME' really loudly. He came to sit beside me on the old blue couch and between his patterned finger swiping across the iPad screen I saw him looking at a photo of the now-gone ocean front beach house we rented for two glorious years several summers ago, when Charlie was around 6 years old. 

I remembered Charlie had been watching the Teletubbies video of Jesso the Scotch terrier finding the beach ball: That one used to be his favorite (he would reenact with a toy dog and a ball) but he rarely watches it now.

He went up to bed at 9pm and wanted me to put on an old reddish ('purple' said Charlie) coat. I spread it over me but resisted his very insistent urge to put it on. He took the coat and grinned. He went to sleep and woke at 9am on a bright Sunday morning.

Jim recalled that, while he and Charlie were waiting in the car for me to bring the burrito, there was mention of 'Jersey' as in 'Jersey shore' -- not the silliness of 'reality tv' but the real thing, Charlie's.

So (For Now) We Go No More to the Ocean

 

As Charlie and I were on the second of three walks in malevolently hot weather so that he ran in spurts growling and unintentionally gave an elderly man on a walk a bit of a shock (I was unable to deliver the 'he's autistic' speech because Charlie was running and I cannot keep up with him but I keep a steady pace and eventually catch up, though no time to stop to talk) -- I remembered spending nearly every afternoon from June through August at the town pool.

And of course, all those trips to the beach and Charlie's glorious swims.

He has absolutely zero interest in the town pool now. We have instituted a moratorium on the beach: With Charlie a far better swimmer than both of us to the point that he is puzzled about the ruckus raised when he swims out too far, ocean visits have increasingly becomes anxiety experiences for all of us. The long ride home, sandy and a bit sun-stroked (even after liberal doses of sun screen) was dreaded by all three of us. I suspect some of the screaming and biting and grabbing and banging happened in part because Charlie was semi-delirious from the water in his ears, the sand on his skin (the public showers just didn't do the trick), the pains in his stomach from beach food and the heat.

It is sad to have given up the ocean, at least for now, and it is not so sad.

The ocean was where a young Charlie gloried and showed all he could do. He was never disabled in the water.

You could say he has outgrown it, and swimming pools. Since there is a common perception that kids like Charlie are teenage shells with toddlers within, it is a huge thing that Charlie doesn't feel the same about the ocean and the beach. He does not ask to go.

And now he has bike riding.

22 miles on Saturday including 16 on the Jersey horse country bike trail in summer heat. Yes, Charlie (and Jim and I) get a workout! But, last year, swimming in the ocean wasn't giving Charlie that.

The ocean is always there and maybe it will become part of our lives again, someday.

We'll see where Charlie leads us..

49 Mile Weekend

 

I know I've been saying we are all coughing away. We are, but somehow we seem unable to stay away from our usual activities, i.e., bike riding.

And so, after sleeping in, Jim and Charlie had a 49-mile weekend, with an 18-mile ride at the beach on Sunday followed by a 6-miler at home, after Saturday's 21 miles.

Leading us to reflect on how tough and enduring our boy is.