We Go With Him

They Also Serve Who Only

Sometimes all one can do is what I'm doing right now, sit in a corner of the black couch by the front door and watch Charlie pacing briskly, iPad glued as it were to his left ear, and listen to the 'Tigger Bop' and then an instrumental version of 'Whole New World.'

It really seems that every Tuesday night for the past several weeks (months) has seen a fluctuation in the barometric pressure, or some notable weather change, the sort of thing one has no control over.

Charlie was inordinately hard to rouse this morning though did get up with the bus waiting. An up-and-down sort of school day followed and then a two-hour, 15-minute bus ride home, I gather because another child had difficulties. There were two very fast bike rides, a forerunner to all this pacing.

It is predicted to be very hot on Wednesday and Charlie is in a 'spring sing' concert. We are all going though, at the last one, Charlie was not up to participating; certainly there is no pressure on him to do anything other than what he is comfortable doing.

One keeps vigil over what can.

The Insomniac Soundtrack

In anticipation of a visit from my parents, Charlie is having a bout of insomnia, proof that mind can work over matter -- over getting in miles of bike riding, getting up early and getting melatonin (even a bit extra).

He has not had an insomniac night in some weeks and (so far) is enjoying pacing the night away, iPad on. There's been quite a few playings of REM's Reveal, a touch of Feist and now it is Arcade Fire, 'Month of May,' 'Rococo' and all that and what do you know, but I just read this in reference to Wagner's Tristan and Isolde:

'Insomnia is a refusal to cross the boundary between waking and sleeping, a bid to outwit Terminus by hiding away in ‘soundless dark’, a zone beyond time. As garlic is to vampires, so clocks are to insomniacs, not because they tell of how much sleep has been missed, but because they bring the next day nearer.'

Maybe music is functioning as those clocks in Charlie's case, the passing of each song marking the hours till daylight, a 'soundful dark.'

On a more prosaic note, the intense emotionality associated Wagner seems present also with Arcade Fire -- a little too rococo.

My past attempts to request the iPad to change the music haven't always borne out so well so I'm letting the music run out as Charlie sits in the brown chair, hands over ears, and we seek Terminus and a soft cadence.

All in an April Week

 

It's been quite a week. Charlie had his own many things to deal with -- for the past several months it often seems that his emotions are directly pegged to prepping himself then actually getting through Jim's teaching late on Wednesdays. The miles of vigorous exercise he puts in must help but it always seems something more is needed and we (Charlie included) all guess at what that might be and don't quite ever seem to figure out.

(I suppose one could say this for la condition humane en génèrale.)

After days of this emotion matched with exercise, Charlie was tired on Friday, asking continually for 'blue mat' while doing speech therapy at school. His teachers honor the requests but try to keep Charlie up and doing his work. We do try to get him to sleep at night, but.

What with it being once again so warm I turned on the air conditioner Friday afternoon and then the mugginess breaking with a pelting rain as we did the very last leg of a long walk in the evening, Insomnia till after 6.30am Saturday morning was not unheralded.

 

Getting Smarter, Maybe

With the word 'river,' repeatedly uttered, Charlie signaled he wanted a shorter Jersey horse country bike ride than we'd been planning for Saturday morning. In the not too distant past I think we might have gently coaxed him into a longer ride but his words prevailed.

As well as he was balky, standing and hesitating, for the four miles and clearly ill at home.

Then he and Jim did a fully fast-paced twelve miles.

In the evening, there was no request for a walk but Charlie paced the kitchen for an hour. He yawned deeply a couple of times. With 3am approaching, sleep has yet to descend on him.

Usually a sickened stomach occasions bigger time behavioral hijinks than insomnia for him. Therefore, while I'm waiting out the night with him, it is with that muted chuckle when you suspect that, after the crucible of experience, you are mayhap on the road to becoming a bit wiser. (Wizened, for sure.)

 

 

Quae Cum Ita Sint

 

I am happy to report that the 20-mile-plus (bikes and those long walks) days we did this past weekend resulted in a sufficiently exercised boy going to sleep at decent (pre-1am) times on both Saturday and Sunday and waking just around 7am (early for Sunday, but regulation if your preference is to live every day similar to the next; just right for Monday to catch the school bus which was on time but had to be redirected by Jim because the digging-up of our street is now in another direction).

Also that I am not minding not having a washing machine, ours being still broken (the repairperson is to appear later this week). Only doing the occasional wash, after you have carried a good helping of clothes into the back seat of the car plus detergent and checked you have a fair supply of quarters, means a nice freedom from the tyranny of the Machine in the Basement and the Need to Wash and Dry Constantly. 

Plus, in a sweet bonus, I realized that the ringleted girl on the TV screen above the triple-load washer I was loading many pairs of pants into was none other than Lyra in Philip Pullman's The Golden Compass, the His Dark Materials trilogy being much preferred by me over Harry Potter. Since I had to stick 14 quarters into the slot, I got a good watch before heading out for groceries, fresh bagels and blogging about bird flu.

I would like to say that the re-institution of the long walks has meant that Charlie is sleeping better or at least rather routinely. Things being as they are -- quae cum ita sint -- Charlie has had some good sleeps, intermixed with his now-routine insomnia (occasionally of a manic sort) that seems very much correlated with the nights before I teach.

I do like that we are sensitive to each other's routines.

Two Good Points Worthy of Note

 

Good thing I suggested to Jim to forego going to the gym Friday morning. He and Charlie had clocked in twelve miles on their bikes the night before and then, while not sleeping till about 4am on Thursday morning, a clearly tired Charlie was in manic-mode and took us on an evening five mile jaunt at a race-walk -- running -- pace. (The route is more than five miles and we did it in just around an hour.)

Also very good that I've been running daily for the past thirty years, from the time I was on the cross country team. After Friday's twelve mile bike ride and at the very end of another night time (the 'curious incident in the night time' business rings often in my thoughts) five miler at a nice pace, Charlie went full throttle sprinting up our street, right fit behind, somewhat. Perhaps my rather ruthlessly healthy diet (meatlessly Mediterraneanish and very heavy on the fresh produce though also heavy on the black coffee; vices are human, and important!) comes in handy, too, in keeping up with the times of our boy.

 

Spring Break With Something Besides Spring Fever

Charlie's spring break began with a (figurative) bang Thursday night when he did not sleep, at all -- something that happened on the eve of another break from school. He still got on the bus at 7.25am with a bag of candy for his teachers in his bookbag after I had made myself lots of coffee and headed off for 8am Latin class.

In the evening after a bike ride, we went to see the movie Admission; I saw the opening few minutes after we had sat through thirty minutes of ads for phones and the Borgia tv series and five trailers and Charlie wanted to go. Charlie then requested a long walk of the five-plus mile sort into a neighboring town, past a small golf course, through a parking lot and over the freight train tracks.

Saturday Charlie woke at 7.15am (just in time to catch the school bus that won't arrive for a good nine days). For the first time since I went to California last June for my cousin's wedding and returned to most of the contents of the kitchen, dining and living rooms on the floor, it was just Charlie and Jim while I went to work in Jersey City for an Open House event. Charlie and Jim brought some big thorny branches to the town dump, stopped for hamburgers (Charlie didn't eat any) and got stuck in traffic while en route to pick me up after which we went to Liberty State Park for a short bike ride because it was really, really windy and the park is nowhere near recovered from Hurricane Sandy.

Two more bike rides and two walks later and it's another no sleep due to anticipation (of grandparents arriving on Sunday) night. Fortunately I don't have classes on the passive voice of 3rd and 4th conjugation verbs or the late Roman Republic to teach tomorrow morning.

EEG Read

Charlie's EEG showed abnormal brain activity. At a meeting Thursday afternoon with Jim and me, the neurologist and the nurse talked about what they saw from the 20-plus minutes that Charlie kept the electrodes on. There was one spike and then a slow wave in one region and "slow background."

Charlie's not having seizures but other things are going on. He had been on an anti-seizure medication and one that, among other things, has anti-epileptic effects, but in the past 3-4 weeks, we have been weaning him off it. So the meds were not likely to be suppressing seizures.

He has three previous EEGs, when he 2, about 6, 11. The second one definitely recorded abnormalities. No and not seizures. Something else.

We made plans for Charlie to have another EEG in the upcoming months after he is off both the meds with anti-seizure effects, plus some other tests, possibly. Certainly it was very helpful to have an extended, without-Charlie-present, conversation about his neurology.

Wednesday night had been one of those can't-sleep-at-alls, owing to grandparents anticipation anxiety (which peaks usually a week and a half prior to a visit); resulting stomach disturbance; weird disruption of Jim and I being on spring break and Jim being home all day Wednesday; barometer falling, a strong west wind, a temperature drop. And other inexpressibles. Charlie insisted on standing in the living room, got his book bag and walked round the house with it over his shoulder, drank lots of fluids, ate watermelon, looked through the kitchen and snacked, played the Beatles and Disney and the Pogues, lay down at three and was still thirsty and hungry then fell asleep around 4, got himself up at 7, was on the bus and had a sleepy school day, a short bike ride in the wind, plenty to eat, two walks, a tense call to et more that we talked him through to a smile as he turned on 'Go the Distance' then Pixies.

Then up to bed and it occurred to me, in contrast to numerous rounds of laundry Wednesday night, Thursday had occasioned none.

In which I maybe reconcile myself to Daylight Saving Time

(Charlie preparing to bike in Bayonne on Sunday.)

So usually I dread daylight saving time and the return to regular time and the clocks changing (automatically now, mostly in our house) an hour back or forth. Charlie's average waking time having been 4am at the latest in the past few days, the thought that he would now be rising at 5am was quite a welcome thought.

Not that clocks and time systems mean so much to Charlie who marches mostly to his own sense of things.

Monday he did wake at 5.30am and we were soon out walking, the better to admire the sun rising to the east over Manhattan. Back in our kitchen, Charlie watched me spoon rice into his lunch containers, told me not to add grapes to his lunchbox and ate a bagel and watermelon.

This latter point may seem ordinary but it is a bit of a change in the past week for Charlie to eat breakfast before boarding the bus. In past years, after a toddlerhood of starting the day with gluten-free waffles in three different flavors, he never woke early enough to eat anything. Now Charlie is the first on his bus and it must have been a long wait till he could eat the morning snack I had packed for him.

His school day was good till he became loudly, yellingly upset during A.P.E. Charlie stayed in his seat at the back of the bus and made a loud sound before coming inside and we thought of how he had, on Sunday, wanted to eat the 'yellow rice' - paella -- he had once eaten in a restaurant. We got some as takeout and Charlie enjoyed it but it must have settled strangely in his stomach. 

Moment(s) of distress and all rather than crawl back into the over-familiar for comfort, Jim announced that he and Charlie would go on a different bike ride than 'the usual local' one, in a different direction. Charlie seemed to pedal a little faster as he and Jim headed off on a nice tour of our town, resulting in the discovery of a newly paved parking lot at the nearby community college (nice pavement = smooth riding).

One walk, a bit of edginess pacing around and hearing the Beatles and Charlie fell asleep somewhere between 'The Word' and 'Michelle' around 10pm, waking up with 45 minutes to go before the bus appeared -- just enough time for what seems to be the new daily thing, a morning walk-with-mom (me), and then boarding the bus and looking back at us waving him off.

Reviewing the History

Saturday morning, Charlie woke at 4am, waited (fully alert) till I said 'walk?' at 5.45 and out we went. The bits of remaining snow on the sidewalk were already melting into slush.

We came home, I went out running, Charlie was out on the blue couch on my return.

He called groggily for a local bike ride when he awoke at 9am. Charlie has been hesitant biking these day and has been cutting the rides short. This time, Jim got him to improvise a bit so they still got in plenty of miles.

Then we went to the barber for a haircut and shave, and it was good and non-eventful.

Then, an unintended tour de Jersey, the northerner part, Charlie of late having a thing for chow fun noodles.

A solid two and a half hour nap followed after which we thought a groggy Charlie might prefer to ride local. Jim had been talking about heading towards Bayonne for a Hudson and we thought we could do it Sunday -- then Charlie said Bayonne and it was good to be back by the river and the bay. Though it has been a long time since he swam in the ocean, Charlie remains a water boy.

It was a good 15-mile day followed by a somewhat unsettled night. My parents are due to visit at the end of March and since that is two weeks away, Charlie has, with his usual impeccable sense of timing, started worrying and anticipating. On a walk in the evening he insisted on carrying an old laminate-and-Velcro picture schedule of a long past visit. He then displayed a bout of mercurial requesting and rejecting his own requests, saying loud no's to going into whatever place he'd asked for just as we were driving up to it.

We ended up back home. Looking more at ease, Charlie asked for another walk and didn't take the picture schedule. Despite having slept on and off, he fell asleep before midnight.

If I had not felt the need to get my knowledge of Henry VIII and Lady Jane Grey in order, and had posted this after he had gone to sleep, this would have been one in the genre of ends-with-an-uplifting-lilt posts. As it is. Charlie woke Sunday at the same time as on Saturday only, it is now daylight saving time, it was 5.30am by the clock. He went for a walk, I went for a run, he didn't fall back asleep and by 8.45am we were heading out to jersey horse country where, moodily, Charlie and Jim (cheerily) biked twelve miles in mud and alongside slush. Charlie only poked at lunch and said 'yes' instead of the usual 'no' when I, on seeing him pulling at his fingertips, said 'fingernails.'

Once home, it turned out that Charlie had a torn nail and he let me clip away. He put away all the bike riding gear, went up to shower and, with 5.30pm (which must feel like 4.30pm to him) nearing, has been (as they say) power napping for the past 3 or 4 hours. Likely meaning that we shall be night owls here tonight.