We Go With Him

Yet Another Post On (Mis/Missed)Communication

On Wedesday night I noted but didn't act quickly enough regarding the (in hindsight) obvious signs of distress Charlie was sending out: asking for Jim (who was working till late) as soon as he heard mention of him at 6pm; repeated request for McDonalds as soon as he had eaten his dinner; insistent consumption of a bowl of blueberries and a small bunch of grapes; stares with a certain glassy eye-ness. We keep some medication on hand when something extreme can happen but I gave it to Charlie too late -- his heart rate must have been soaring -- and had to ask my mother to call 911.

As it is the end of January, we are just a bit it into the spring semester and it was at precisely this point in time that, last fall, Charlie went similarly into crisis around 4-something pm on a Wednesday afternoon and I called 911.

Charlie stayed seated in a corner of the blue couch for all but a few intense moments this time and one policeman came in and was calming and another waited outside. Again, they didn't have the lights of their car on. The medication got into Charlie's system and he was calming well when they left and remained so for the rest of the evening.

He has had a string of good days at school; on Wednesday, Charlie had gotten off the bus smiling. He has been enjoying my parents' visit (and it also should have occurred to me that, Wednesday being a few days before their departure, he would be nervous). There was definitely a stomach issue on Wednesday and I was preemptive but not with (obviously) everything.

Parental lag, it was, and a potent reminder that, even when there are words, misunderstanding (and not only in the case of Charlie!) can ever still occur.

 

Opposites Collapse Into Each Other

Somehow I went from having three recommendation letters to write to ten. Always glad to be asked! Writing energies will be directed thereto and some other places and I find it not the ultimate irony but intriguing that I'm so wrapped up in words, the very entity Charlie that evades, exasperates, exercises his mental and other energies so much.

There's something in the fact that, when he has stomach discomfort, he asks to eat more.

Sort of like the way my students told me that if I said a quiz would be easy, they'd fail. So obviously, they were assured, it would be the hardest in their college careers.

Again, Again

Since last Monday we had a not happy trip to the beach (Charlie didn't want to ride, an entire soda was pitched into the front seat on the ride back and other things), I thought it well to note that, though a trip 'down the shore' Sunday morning yielded 'but' a ride of 4 miles (Charlie doesn't care to ride in too much wind), a pleasant time was had by all. He and Jim are out doing a local 7-miler now and it's about 20 degrees warmer than Saturday morning's 18 degrees F when they did a 1-minute ride in Jersey horse country.

A Winter's Night in a Deep and Dark January

 

I texted a student on Friday morning and drove Charlie to school. He had a devil of a time going to sleep the night before, repeatedly calling out the names of restaurants and stores (a possible sign his stomach was in trouble). He woke and dumped a box of photos and tried to pull down the refrigerator and pulled down a shelf of clothing which is all obviously not good but it was good that he was telling us he couldn't take the bus to school before he was on the bus (which did show up). And as I drove Charlie in the white car, it felt like the so many times I've driven him to school since he first went in suburban Missouri.

Charlie did make it home on the bus after a quiet, tired sort of day and I had taught de septem regibus Romanis and talked to the neurologist and nurses while in motion and at the checkout line in the store. Jim was soon home, there was a short cut bike ride as snow had started falling in 22 degrees and then a throwback trip to a really good local hamburger place.

At 9pm Charlie announced 'give' while standing in the living room and took the lined-up suitcases back upstairs. He seemed a little more at ease but then was in High Anxiety mode, saying phrase after phrase and looking at me to echo them and reaching for Jim's hand, for what felt like over an hour. He did keep the soft comforting weight of the new afghan my great aunt Renna had made for him on his lap.

(I used to spend many feverish and/or asthmatic hours lying under her afghans on my parents' couch.)

He is a boy no one was sure could talk. He lives with two very verbal people, no wonder Charlie turns to words when he is in distress. None of the words said as much (i.e., Charlie has yet to say something like 'I feel nervous / nervous pangs coming on'). But they were words and the refrigerator stayed in the neat alignment Charlie had himself restored it to.

Then Charlie, wide-eyed, said 'bedtime' and ran up the stairs (I hovered) and was sound asleep within minutes.

More on the Language of Things

 

Minus 4 Celsius occasioned a short ride but it is not like anyone else was bike riding.

Arctic blast of cold aside, it has been an interesting week. The bus aide called us about ten minutes after a groggy Charlie boarded the bus Thursday morning. He had yelled 'Gong Gong Po Po,' thrown the contents of his book bag and lunch boxes, banged his head on the window and backs of seats. We sighted the bus on a street by the Parkway but it wasn't pulled over and there were no police cars with sirens flashing around. Charlie was sitting quietly in his seat at the back of the bus when Jim boarded (stepping over watermelon and sushi) to take him off.

"We'll see you tomorrow," said the bus driver.

We took Charlie to school. I walked ahead to tell the aide what had happened and off went Charlie. He had a good day and ate a hamburger and a few fries from the cafeteria, a bit of a first. We picked him up smiling and the bike ride was called for.

Charlie has been wearing the same clothes since Tuesday. This evening, I took care that he made the switch to something else.

As I said to the neurologist, a clear sign of Charlie having an increase in anxiety is elevated OCD, manifested through things.

 

Bit Of Beach Blast

It's kind of been Anxiety Central around here (a Monday holiday, winter weather and chilly bike rides, dad 'n' mom back to teaching and running around with more to do, grandparents' visit anticipation worries, familiar places closed or rather destroyed due to that hurricane, being 15 1/2) so fortunately Charlie had a neurologist appointment Tuesday afternoon (though have to add that to the list of possible causes of anxiety). So I rushed home after teaching and we picked him up at school to go to the doctor's office and I assumed that Jim had Charlie's iPad and Jim had listened to me say I would get it. 

Yes, the iPad was not in the back seat of the white car when we picked Charlie up.

After first turning down the iPad I used (it has 3 of the 4 books I'm using to teach this semester on it) Charlie tapped and swiped, once I had changed the background photo to the same one (of the Aegean Sea yes that Aegean Sea in Greece) and we heard several rounds of 'Wouldn't It Be Nice' up and down the Garden State Parkway.

It was quite nice.

 

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.

 

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.)

Bewusst und Unbewusst

I get back from a morning run and Charlie hands me the timer and said 'timer.' I set it for 25 minutes and he runs up to the bathroom, with his iPad playing boppy beach tunes reminiscent of the Monkees, showers and other business and comes back down and gets ready for the bus, possibly a few degrees less shoulder-squared tense than he was yesterday (and much of the year). He doesn't seem to have the infamous FluYork flu that's being talked about but.

We watch and read his behavior closely because of his very limited verbal language; because of the behavioral science basis of his education; because Jim and I are big (and frequently fast) talkers and we know that a good part of what gets communicated comes not from words, but from what people do. People can talk about moral ethics and having charity and forgiveness and such in one setting and then use far less peaceable actions when they see others not acting as they believe or want. Or, people can say a 'yes we know' about you're being a vegetarian for thirty years and offer you a table with the same array of dishes laced with pork and such you've seen for forty-plus years.

I know Freud is the last name to be mentioned these days when discussing autism. Charlie yelling 'no school tomorrow' last night on his bike (stopping when Jim simply repeated 'no school tomorrow') and Charlie speeding out to the school bus: Words said in full consciousness, and unconscious and deeply felt desires.