We Go With Him

They're Predicting Lots of Hurricanes

A performer Charlie is not -- I think he only sang the last bar of one verse of 'Streets of New York' loud enough for anyone but the microphone to hear -- but sing he did and he sat attentively in his seat (beside his aide, Charlie) for the whole concert on Wednesday.

What he did not do was sleep much after Monday night. Tuesday, Wednesday, and Thursday nights were all consumed in several hour sessions of pacing, iPad to ear -- Arcade Fire to REM to Abby Road to Hard Day's Night (someday there's a blog post coming playing on that title at the rate of insomnia experience in our household), Disney, Wiggles at Wiggle Bay -- till 2am, with some intermittent attempts to lie down on his bed, snack eating, Mom-reset-the-music-on-my-iPad requesting.

(On Thursday night, the last- mentioned occurred about 13 times occasioning 26 Mom (me) jaunts up and down the stairs.)

Only Monday was a so-so school day. The rest, after maybe 4 hours of sleep max, were good. A physical exam at the pediatrician's on Thursday after the usual 30-minute plus rate in crampt quarters with Beauty and the Beast playing overhead (and Jim saying, hey, so that's what's going on in those songs we hear all the time! and me not always resisting the reflex to chime in with Belle) also went really well. Charlie is 5 feet 8 1/2 inches, as tall as he has been for awhile: Mayhap the growth spurt is at its end.

He finally slept in a bit this Saturday morning and had a nice and steady 9-mile ride on the muddy, gravelly trail and a panic attack in the car on the way home. The latter stayed contained (what can I say, Jim and I are developing reflexes about dealing with such) but we decided to not have the small birthday celebration with a few friends we'd been planning.

It was also a week of hot temperatures and rampant humidity and some rain. They're predicting lots of hurricanes this season so yes, that post with the Beatle-inspired title will happen.

Regardless, bikes will be ridden, and daily.

The Last 2 Lines of 'Easter 1916' By Yeats

We drove down to the beach where we used to stay at the beach house on Saturday morning and drove on sandy streets and sand hills (they really gave the right name to that hurricane) and Charlie said 'no bike.'

You cannot stop an object already flung in mid-trajectile and we drove back home and Charlie called for a local bike ride, which he and Jim are on now.

Last night, Charlie said 'no yellow jacket' and 'blue coat' and wore that blue vest on a cold ride, with lights.

About midway through some car rides (the longer ones especially), Charlie has been debuckling himself from the center seat he has occupied since he was 2 days old and we brought him home from Missouri Baptist Medical Center and sat behind me, saying 'push' so I pulled up the seat and he had the legroom he needs. (I have been the same height since I was about 13 and prefer having my seat pulled up.)

'Taco' he said last night in the midst of not a litany but more like a suite of verbalizations of the things he likes to eat and the places they are and various grandparent references (both sides of the family, with Jim's parents recalled mostly through their now-changed-ownership house). 'Cindy' he bellowed in the car this morning on the Parkway, the name of a verbal behavior therapist at a center I used to take him to when he about 8. It was Disney on the way down the Parkway with a dash of Wiggles 'at Wiggle Bay' as we approached the ocean and then Abbey Road, touched off with Sugarcane Harris, on the way home.

These new spins on routines so rigorously followed by us all were not surprising given that the week was spattered with change and my return to teaching the smallest part of it.

'Hi 'has often been a word Charlie wields when he is agitated (it is no 'polite meaningless' word); this week, his repeated utterances of it, along with vividness of face, were him in the full-pitched ardor of his age. I kept doing the laundry and Jim and I have both been doing a lot of reading.

The Mix

 

I finally got around to putting Arcade Fire on Charlie's iPad last year after the cameraman from the BBC (they were making this film; Charlie's not in it but his school is featured) mentioned it. (The cameraman was a very nice guy who had grown up on a sheep farm and was glad to run down the street after Charlie on a walk.) Charlie had The Suburbs going in the car last night and I thought, (a) I would have liked hearing that when I was 15 and (b) I had no idea to find how to music like that when I was 15; all I heard in my household was the BeeGees and the Bay City Rollers and I played Bach on the piano. A classmate gave me a tape of Ziggy Stardust and the Spiders From Mars and wandering in either Tower Records on Durant or another place on Bancroft in Berkeley, I found Sinéad O'Connor.

Beatles, Wiggles, Jimi Hendrix, Arcade Fire, all at once in a nice messy mix: It's 15 and you can listen to it for a lifetime (leading me to think, the one piece of advice I might give to parents with just-diagnosed-with-autism kids: skip the kiddy stuff, go straight for the Beatles.)

For No Man Nor Woman Is An Island

While signing Charlie, on the Friday of a curious week, in at the school office after he quote unquote 'did the best ever' at the dentist (who asked for that to be noted in his chart) I listened to another student's agitation (expressed in more words than Charlie uses); felt the Stimmung, the pulse in the air, amid secretaries, aides who work at the school, aides dropping off students, students, parents, others; and you know how when you're living in a dorm and a synchrony of femaleness occurs?

Yes.

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.

When Disney Is a Warning Sign

To the unschooled, the progress that someone (this would be Charlie, who had a good school day on Monday though he was very tired) has made to leave 5 pieces of sushi and a packet of soy sauce is most likely not apparent. Those 'in the know' know that the above 'still life with 5 sushi' is a sign that said boy was able to overcome the OCD urge to finish the whole pack and eat only as much as necessary.

He also showed how far he has come, though in ways that may be troubling to many. Last night we could tell his uneasiness-o-meter was on the rise. He came back from a walk and said 'bedtime,' started listening to one Disney album in particular with songs from Pocahantas and Hunchback of Notre Dame -- songs meant to spark emotion in a certain Disney way that is a bit forced -- and running around maniacally. We could hear his feet pounding on the floorboards above our heads.

Charlie came down and smiled a bit and then hung around the kitchen, still listening to those songs (it's not a good sign to hear the one from Beauty and the Beast in which Gaston wants the head of the Beast) as I did some things in the kitchen. I could tell he wanted a walk but it was dark and images of us running after him streaking off towards cars, trees and lawns were in my mind. Jim and I praised him for doing good, assured him we'd stick together.

Charlie announced he wanted 'bedtime' and went upstairs, soon calling me to type on his iPad (with a different phrase, 'Gingerbread Boy') then said 'Mommy stairs.' I gave him more assurances and a little extra melatonin, went downstairs and we heard the getting-familiar sound of the iPad being hammered on the wall.

There was a great deal of plaster and dust on his bed and Charlie not looking pleased. I took the iPad and placed it on the floor and Jim sat in the chair and talked soothingly and Charlie stayed on his bed (without his led shaking -- that's a sign he's in heavy neurological storm mode). He got through it and got off the bed, saying 'sheet bed' and headed for the bathroom.

The toilet never flushed but I think it's likely there is a thymic issue -- his stomach was just a bit distended -- and this morning, the day after, the air is heavier and the light isn't shining so brightly. Charlie was very glad to lie down on a clean sheet and clean pillows and fell asleep after some more talking with Jim, and the sound of the ocean on his iPad.

He was very groggy getting up this morning but did soon as the schoolbus pulled up.

We've looked into fixing the wall. I have a feeling Charlie will bang out far more of it (preferably with the iPad -- why he's sitll using his old one) and since the whole wall has to be redone, well, it's a mess but things in our universe are far worse. It's just a wall (ok, walls, as there are holes in several walls of this house, which is incredibly sturdy). Messily, imperfectly, it's about progress as perfection.

 

More on the Not a Toddler In a Teenage Body Topic

When you hear Jimi Hendrix from Charlie's room at 11pm, you know it could be a 4am-er. I've hesitated to give him too much melatonin, out of concern that he would have a hard time waking up and getting to school. The nurse at the neurologist told us that melatonin helps you fall asleep, but doesn't keep you asleep.

We've been giving Charlie the same dose of melatonin since he was about 9 or 10 and he clearly has grown. I gave him some time around 11pm last night and at about a quarter to 1am his eyes were drooping while he was watching something on his iPad and he went to sleep. And, he just got on the bus with zero drama.

A friend's teenage son had told us that he takes melatonin so he doesn't stay up all night playing video games.

Despite Charlie still watching plenty of preschooler fare and his liking for Barney, Disney and (of late) a round or two of 'The Chipmunk Song,' he is a teenager with habits more like my 'um, Dr. Chew, stayed up till 5 playing video games (but it's such a great game!)' students. He chafes -- recoils -- at cutesifying treatment as much as I did when I was his age.

He also handles things like waiting an hour due to a thunderstorm for a bike ride, going out for 10 minutes and turning back due to thunder, going out for a nice evening ride, not going for a requested walk at 9.30pm because it really was dark and walks don't necessarily settle him -- handled it all well.

 

 

Homeric Chariots and a Slightly Busted Batmobile

This post is a bit about "Neighbors 101" (advanced version). But with a superhero twist.

We've lived in this house, more or less (not counting the period we lived in my in-laws' sort-of basement and then in a condo so Charlie could go to the school district that started out great and ended up a bit of a mess) for nine years. 

We haven't exactly endeared ourselves to the neighbors, but c'est la vie, autismland-style. 

In the beginning, lots of me yelling 'CHARLIE' and running frantically out the door. Now we just run, sometimes on the daily race-walk, sometimes because Charlie is heading to brown car trunks.

Monday afternoon, I could sense (by the way he held his shoulders) that Charlie was on edge on a second early evening walk. He ran with his characteristic growl moan down the street. Walked and uttered a very loud scream.

Of course, a few feet away were the nice old guy who waves at us from his front yard, a woman his age, a younger woman, and a cute 2-year-old girl.

The man gave me a sympathetic look as I hurried Charlie past. Charlie then ran, still growling, in a slightly over desperate way. I texted Jim. Jim said he'd get the car.

This is where the batmobile aspect of this post comes in.

Charlie only rides in our wonderful workhouse white car now but the black station wagon has settled into a life of mostly being parked on the street, hauling the loads of branches and weeds and dead ivy and dead trees and shrubs that I have been making a highly enjoyable summer project of removing from our front yard, taking Jim on the occasional trip to NYC when he wants to get back and forth without worrying about getting caught on a broken down NJ Transit train. The back right passenger door won't open (the lock keeps whirring and trying to) and the car lacks four-wheel drive. It's a great car, especially as the dealership said it was dead about 4 or 5 years ago, allowing we could eke out a little more time with it by paying $XXX.

Ha.

Charlie, still growling, was hastening him and me down the street and I was wondering how long it had to take Jim to get in the car and drive but then, tada, black car! 'Hi pal!' Jim called out the window. Charlie looked, grouched, and started running. 

Jim got out, left the car and we all ran home without any incidents with other cars or parts of them.

Charlie had a happy time sitting on the couch, drinking cold things and eating crackers and typing B ocean as I switched between reading about why the euro zone crisis could go on for 20 more years and which era of ancient Greek history, give or take 100-500 years, the Iliad may have occurred in, based in part on the fact that the heros in the poem do not seem to know how to use chariots.

Then we did another walk. There was a breeze and it was much cooler. Jim came too, so he could retrieve the black car and he and I agreed, good solution that I text him if Charlie is having trouble on a walk and Jim can drive obviously much faster than run to catch up.

Unlike those Homeric warriors, we know what to do with our trusty vehicle.

The background to this post is the mysteries of male adolescence

There were some whimpers (it it still hot just not as hot) but a Jersey horse trail bike path ride is always a good thing.

We're trying out some small measures to help Charlie not have too many 4am nights. I'm trying to figure out how to work things with the iPad -- Charlie does have a tendency, or need, to listen to Jimi Hendrix late at night and 'Voodoo Chile' isn't exactly a lullaby (though last night, around 11pm, he put on the ocean waves sounds after the Jimi album ended, and he did sleep).

A Historical Consciousness

High on Jim's and my lists of autism myths to debunk is the one about an autistic individual being, for instance, a toddler's mind in a teenager's body.

We most definitively have a teenager in body and mind.

(I know, can you believe the above Charlie Long Legs was once a babe inside five-foot-'tall' me?)

Perhaps because it is summer, Charlie has been on a bit of a nostalgia kick. He has been calling for the six mile local bike ride that goes west that he and Jim did a lot in previous summers. It takes them down a certain favorite street where a far younger (and shorter) Charlie learned to get the hang of riding on hills, on bikes that were not yet the same size as Jim's. There is also a school with a playground that Charlie has often requested to stop in, to go for a swing.

They did three of those rides Saturday, morning afternoon and night, with only a single walk in the morning.

In the middle of the day, Charlie was definitely on edge. He sat some in his brown chair waiting for his second bike ride and then, as Jim was getting ready, ran with a holler out the door, me on his heels calling for Jim. Charlie only went as far as our front lawn beside the white car but he was in distress and his legs were shaking as they had on Friday after he ran down the Jersey horse country bike path, also hollering.

Jim's feeling is getting Charlie in motion is the best thing so he set about getting an agitated, weepy boy onto the bikes and off they went.

Frankly I still have another ABA relic idea in my head of making sure Charlie is totally calm (over a 'behavior') before starting up on something new and a 'preferred activity.' But Jim has an understanding off 'bike therapy' based on his own experiences, memories of being teenage boy of much feeling and only so many resources.

It was Jim indeed who made the observation about Charlie's rising nostalgia and it being summertime .

At which I said, no surprise, Charlie is a historian too.