We Go With Him

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.

View Through a Window High Up

While sitting, as I rarely do, in the black chair by Charlie's bed as he tossed and turned, I kept thinking I was on the third floor of the Acropolis Museum in Athens. It is directly across from the Acropolis, which you can see fully through all the windows. A replica of the frieze on the Parthenon that Elgin took to Britain is mounted on walls running all around the middle and you get a very strong sense of what was once over there on the Acropolis and why it belongs in Athens.

Looking out through Charlie's window onto the street, I felt as I did looking towards the Acropolis, as if it were behind the pulled-down shade.

Charlie did not sleep all Friday night. Positive feedback, turning off the iPad, gentle urging to 'sleep and then we can walk' all were fruitless. He had slept a lot the previous two nights and we are having a spell of wet air, grey sky, rain, warmish temperatures and sogginess that is perfect for irking Charlie in inexpressible ways. He had more than the usual amount of fiercely repetitive speech, sometimes shouting about Rocco Portia, Gong Gong Po Po, Julie, fries, McDonald's, burritos, grandma grandpa ladder to the attic. He moved a stool and tray table into the bathroom, unearthed a beat-up copy of The Littlest Angel and listened to me read a few words, ran back and forth, turned on the shower. At 3.45 am I turned the iPad back on as keeping it off seemed to be causing only more distress. Charlie had a snack and kept going up and down the stairs and lying on his bed and getting up and sitting in the chair and getting up and wanting socks and shoes and we told him, sleep first then a walk. He fell asleep in the brown chair around 8am and dragged himself up to his bedroom after 90 minutes of sleeping so bent over his head was parallel with his lap.

Some kind of manicness is really running through him. One of the medications he takes addresses this but have to wonder if he might need an increase of something ? We're wary of adding more meds and not a sleep one as that could give him a fuzzy head that has sometimes been a predecessor for behavior storms.

Yes, Charlie is a 'complex' child!

Posted with Blogsy

High Is the Anxiety

 

Order was restored on Thursday as, after Jim came home from the train at 4.30pm, there was a bike ride.

But anxiety always lags. Friday morning, while I was on my habitual morning run, Charlie woke up and was out the front door before Jim could put on shoes. I came home to find the door open and heard the iPad playing upstairs.

Jim and Charlie soon appeared, we took store and did a group team hug and I skedaddled off to work and Charlie got on the bus without undue incident.

High anxiety around here (wet, grey, humid heavy-air rain splotched weather doesn't help); suspecting that Charlie has transferred worry about my dad's health to worry about us all. Parents out of sight mean parents are more on his mind than ever! It's certainly not possible to tell Charlie to 'stop worrying' so we're working on keeping up a feeling of peaceable-easy.

Acceptance, Crisis and Extreme Love

Wednesday was Charlie's third day on a wave of not sleeping. He did go to sleep after 3am, after hollering for his iPad and yelling the Chinese names he calls my parents. Jim left early on Wednesday for a PhD defense, before Charlie dragged himself down the stairs to the bus. He had a field trip to a farm and had a great time, got smiling off the bus, wanted the bikes as he had on Tuesday when Jim had to work late (oral examinations for another student) and then as soon wanted them put away (whereas on Tuesday we had left them out for a few hours and Charlie ran happy circles in the yard), demanded a car ride for a burrito, demanded another burrito as we went home, gave me a look once we got home and said 'Daddy' which meant I had to produce Jim at that very moment (oh for Harry Potteresque abilities), sat in the brown chair after I set the timer for five hours, let 2 minutes scroll by and struck his forehead on the wood molding, ran to the dining room and cleared a table of bike helmets and papers and whammed his head hard and stood wailing so loud I had to repeat my description of 'my son in crisis' to the 911 operator several times.

At such times of crisis, we know in our bones how deeply we love our boy. 

First responders in New Jersey have to have autism training and it is helping. Two squad cars came without flashing lights and the policemen, seeing that Charlie was simply standing in the living room, stood in the front yard. One left, the other called the EMTs and asked that they keep their flashing light off, and then the officer stood outside. They had dealt with an autistic child in a similar situation before, he told me, and he thought that the policemen's presence on entering the house had made things worse. Indeed, the officer never came inside; the EMTs showed up and Charlie answered their questions echolaically ('does your head hurt?' 'hurt' 'does it hurt a lot?' 'a lot') though I think the echolalia would have been hard to spot if you didn't know, as Charlie spoke very clearly. They wrapped Charlie's whole head in bandages to keep gauze over the middle of his forehead so he had a distinctly swami look.

Everyone was very kind and calm and it all helped de-escalate things fast. Charlie fell asleep until Jim returned, roamed around and used his iPad and snacked at midnight and was back to sleep at 1am, with the iPad playing the Pogues softly.

Turning the music to soft is my new innovation. Full volume Pogues or any music ('A WHOLE NEW WORLD' 'NOW THAT YOU'VE FOUND YOUR PARADISE THIS IS YOUR KINGDOM TO COMMAND' 'CHRISTMAS CHRISTMAS TIME IS HERE') can rev up anyone and Charlie, being 15 and being, well, Charlie, isn't exactly good at monitoring when he's happily hyper and liable to become unhappily hyper, and manic, in the next second.

I had seized upon the lower volume iPad as an alternative to my Tuesday night stratagem. Charlie had taken the corner of his iPad to the bathroom wall; I turned the device completely off.

But by Wednesday, Charlie had just had a surfeit of too much. Not only had Jim worked late three days recently, but I had been gone on Monday for Parents' Night. There was lag from my parents' visit and, while we did not talk at all about my dad breaking a vertebra and being hospitalized -- he is back home and does not need surgery, thank you for the kind messages -- Charlie always figures such things out. I suspect it was all keeping him from sleeping: He has really struggled with insomnia this whole year but the past week has been the worse as far as consecutive non- and minimal-sleep days. I knew Charlie was sleep-deprived and therefore less in control of himself as usual. Plus, the weather was humid and warm after last week's lovely crisp autusm days and clear blue sky.

Of course, I do not want to make calling 911 a regular occurrance. But on Wedesday it was important to call as soon as possible, to keep things from getting worse.

Thursday morning, Charlie got up and onto the bus and I quote Jim that, rain or shine, "we're riding bikes today."

Monday Night

Sunday night ended up being an all-nighter for Charlie who nonetheless was smiling broadly before boarding the bus on Monday morning. Parents Night was great; Charlie is in a class of 9, they have a lovely room with windows in the new wing of the Big Autism Center, Charlie has a mat-fortified corner to work in and be apart when over-stimulated and unable to participate in some of the group activities. He was asleep when I got home at 9pm only to awake an hour later. I gave him some melatonin after taking a hiatus of a few nights. I'm not sure if he will sleep but this could be another long night because my dad fell in his garage earlier Monday and hit the back of his head and fractured a vertebra and I'm checking for the messages from my mom, sister and cousins. And thinking a lot about my dad now in a hospital room in good old Oakland Kaiser where he used to work the late shift a few nights a week when we were little.

 

Posted with Blogsy

Yes, It Is Late and We Are Up

It would be unrealistic to think Charlie can sleep before 2am tonight due to sleeping until 2pm, out like the proverbial light on the old blue couch. He had fallen asleep at 3 or 4am or some such, after cheerily viewing his old favorite Barney 'let's play school' video.

Sunday featured a trip to recycling branches and yardstuff, a fast local bike ride, 2 walks, over-consumption of frozen French fries at cold and hot temperatures, and -- what I would say was a smart idea on Charlie's part as we had a chunk of time to fill -- a surprise long walk under a clear night sky lit by a half-moon at 10pm and at a 12-minute pace. We were back in an hour.

Since Charlie slept in (understatement), we were both able to get quite a few things done in the morning including (in my case) prepping Tuesday morning classes. Tomorrow, Monday night, is Parents Night at the Big Autism Center and I feel like I've been waiting two years to go as I wasn't able to last year due to it being on Wednesday when Jim teaches late.

Settling in for a night together, we are.

Posted with Blogsy

The Night Team

 

I turned off Charlie's iPad just before 5am on Saturday and he went to sleep for over 6 hours. He and Jim biked 16 miles in Jersey horse country and then Charlie took a 3 hour nap so here we are all up past 2am. About a half-hour ago Charlie threw a small glass jar I had left soaking to recycle in the sink. He ran to his room with Jim close by, I swept up the glass, it passed, we're all hanging out together, I'm actually making progress writing a paper and that kind of throw-and-smatter is the stuff of which transitions are made. It's been a good day into night together.

 

Posted with Blogsy

Present Tense and Presence

It's looking like this will be the third all-nighter of the week as Charlie napped in the brown chair for just over an hour in the early evening. Jim is usually home on Fridays; there were things that needed his attention though at work and then his presence was additionally requested at an evening event. It all worked out fine with Charlie cheerily waiting on the front lawn and a lights-on bike ride but, at the risk of playing the complainer, I reflected that people still don't fully grasp the extent to which Jim is a primary caregiver for a teenager with severe disabilities and his presence is not merely required, but essential on the home front. Next Tuesday Jim has to go into work for an event in the early evening and we wondered if there might have been more of an effort to schedule this earlier if he were a mother citing child care needs.

For Charlie, there's no such thing as virtual reality. He used to pore over photos of people when he was little but this happens rarely now. He did such perusing a few times last week and it seemed to leave him unsettled: The photos were of a far younger Charlie with far younger parents and grandparents and, while he grinned looking at him, he was tensed and hyper afterwards. Just too much, times and memories and faces and thoughts colliding.

For that reason, I questioned a long-time habit of emphasizing my parents 'will be back' as their visit ends. The expression brought that tense frisson to Charlie's demeanor, as if he wasn't exactly looking forward to going through all the anxiety of anticipating another visit again. One visit at a time (i.e., the present one) is enough to contemplate.

Charlie also of course relies deeply on our actual presences. Many people have mentioned Skype as a way for him to communicate with relatives in California or with me if I, say, went across the Atlantic ocean. But we noted years ago that Charlie was troubled to talk on the phone, to hear familiar voices, disembodied and emerging from a device. He likes us around not just to talk to him but for a hundred thousand other reasons. That means travel has become in my mind's eye solely -- not complaining about this at all; I would rather stay within a small circumference of places and close by Charlie if it keeps up a good peaceful-easy-feelingness.

And it is good to know Charlie would not consider talking heads as any sort of substitute!

Posted with Blogsy

Hormones

Without getting into matters too intimate, I rather think these are very much a reason for Charlie's routine bouts of insomnia, melatonin take the hindmost. They are why I'm doing a fast bit of laundry at 2.30am and likely why Charlie's had two rounds of showering since midnight.

Of course, they play a part in furious strength behavior storms, acne and, possibly, regular bouts of stomach distress.

They are probably extra hard to deal with for a boy without peers to hang out with, who works out impulses and aggressions sprinting beautifully down the sidewalk with his 43 and several months-old mother running after (and feeling rather pleased at the increase in her wind thanks to daily runs; we did three walls on Wednesday, in part because there was no bike ride as Jim was not only teaching all day, he had to be in the Bronx at 9am for a dissertation defense that ended up not exactly happening).

For the past couple of weeks we've been calling out the praises to Charlie as he's speeding down the sidewalk. For years on years, we've urged him to be active as an antidote for aggression and in an effort to 'help him develop leisure activities.' It's finally occurred to us that Charlie the sprinter is his dutiful response to our years of encouraging him to exercise. Expressing annoyance about him running would only be sending very mixed signals.

Days of cute and toys now past, this growing up stuff is certainly complicated. For sure, it has the potential to be endlessly interesting.

I'm off to check the laundry.

Posted with Blogsy

Amid the Maelstrom

The special thing about this photo which resembles myriads of other photos on this blog is that Jim and Charlie were riding into (sort of) gale-force winds (tornado warnings in NYC) and energy levels were somewhat compromised because someone didn't go to sleep/bed till 5am Tuesday morning.