We Go With Him

Charlie Turns 16

Charlie is now 16 years old and Wednesday morning I packed his book bag with store-bought cupcakes wrapped in brown paper (I'm not sure but I wager he might be tempted to eat them on the bus) and wrote a note in his communication book, thanking his teacher for helping him get this far.

Charlie had a fine day at school (he had two cupcakes) and two bike rides. Inbetween, we went for a drive and Charlie's insistence we go 'this way' turned into us discovering a fairly efficient way home via downtown Newark, in the midst of rush hour traffic.

Tuesday night Charlie's nervousness had risen (it didn't help that the barometric pressure changed and the cool-enough-to-turn-on-the-heat temperatures went decidedly in the opposite direction) and his mind was frozen around one request, 'shopping cart.' We had him wait a half hour, went out to the grocery store, Charlie looked for things that were not to be found -- or rather, whatever was driving his anxiety led to him asking incessantly for the one type of crackers (in a red box) the store no longer has. He was quite keyed up at that point and it was clear the request to go to the store was not a request but a manifestation of worry that set off Charlie's fight or flight response.

It's been so, so long that Jim taught late on Wednesdays that it seems likely Charlie's got his body programmed for it. We assured, assured and assured him that Jim would be home on Wednesday when Charlie got off the bus but words are just words, air, breath. Charlie has experienced plenty of moments when he was told 'it'll be okay' and it wasn't or when he 'just had to wait five more minutes and X would happen' and it didn't.

We got home Tuesday night all right and saying 'shopping cart' turned into a semi-joke. (I'm definitely still not in favor of taking Charlie to the store no matter how much he says the word, supermarkets having become as sensory overloaded for Charlie as Disneyland would be).

I had been reminded of words' uncanny lightness yet power earlier on Tuesday. Charlie had an EEG and, quite differently from about a month ago, he never tried to pull off the cap of electrons and sat equitably, iPad timer ticking down 41 minutes and me holding up another iPad while playing games; bingo (nice animations after winning a round), tic tac toe (rather boring), puzzles (which one could do in one of three different languages so I chose French, curious to review the names of the continents and planets in that language).

Yes, I played the games and Charlie watched and Jim sat opposite him and the technician watched Charlie's brain waves on her screen. It's been years and years since I sat at the little blue table we used to have and did Aba programs with Charlie but the memory, visceral, psychic, remains. Somehow the situation -- the task at hand of having him sit with the electrodes on-- got me to realize that my voice uttering words would register as requests for Charlie to do something so I was quiet. His eyes were glued to the visuals on the iPad screen; the sound was turned off, so the numerous jingle jangly noises kids' games are overstuffed with were absent.

A 41 minute EEG.

I had thought Charlie might have some 'lag' after such success and that in combination with worrying (against his conscious knowledge) about Jim being home or not was too much on Tuesday night.

I had hoped getting the nerves out the day before would mean a happy birthday. I am pleased to say it did and the birthday was quiet with just enough fanfare and so a good one. Indeed, the celebrating in the party sense is not yet begun.

Jersey Cholly, He Is

Since January, Charlie has had exactly one incident at school, a statistic all the more notable when you consider the amount of heavy-duty anxiety and those intermittent panic/anxiety attacks and the med change elsewise going on.

Since January, we have been waiting for the Dadless Wednesdays (a big reason for said panickyness) to end and they have and this is a good thing, it having evolved since some years that Jim and I are Charlie's sole caretakers. (Yes, we do need to work on this. We are.)

Since Charlie will be turning 16 in a week (!), we have been making preparations, of a birthday kind and otherwise.

As Jim (who took the photo at a hamburger stand stop during a muggy Tuesday bike ride) likes to say, the gent abides.

Negotiating. And Ketchup

I got as close as I ever have last Wednesday night (Jim gone teaching after being home during Spring Break last week) to negotiating Charlie out of having a wall-smashing, desk-clearning 'behavior.'

(Now that is a euphemism!)

I'm very proud, via listening to what was said to him, that Charlie worked his way through feeling ex-treme-ly anxious at 7pm, with 2 1/2 hours more to go before Jim came.

Also. I ended up buying a huge bottle of ketchup and Charlie just used as much as he needed to drench one plate of French fries, rather than the whole bottle.

 

 

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.

 

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.

It Was Another Perfectly Imperfect, Imperfectly Perfect Year

2012; Charlie turned 15 and it was a very good year though given the two ER visits for stitches in the back of his head; instances of head-banging-inflicted property damage (same neighbor's tan car twice, same spot on the trunk; two different cars belonging to the same family); three tree trunks and the pole at school that were sites of similar; a call to the police; a new gallery of holes in the walls; the thumbnail Jim lost and the long sleeves and pants I taught in through the hottest fall days rather than field questions such as 'what happened to your leg, Dr. Chew?" -- given all this, it was the usual epic tale we have been honored and lucky to live with our boy.

4,000 - 5,000 miles were biked by Jim and Charlie and some couple/several hundred walked, sprinted, dashed and run by Charlie and me and/or Jim.

There were not a lot of hours slept in spring, summer and the start of the fall (so we were both 'night owls' and 'larks' for quite awhile).

Charlie's neurologist opened an office in north Jersey, I had a long consultation with him and another neurologist and a nurse just before Hurricane Sandy and the possibility of Charlie having long-term gastrointestinal distress was revisited, acted upon with a reworking of Charlie's diet (sushi begone! Fuji apples by the bushel!) and a bevy of over-the-counter medicaments, and is currently being investigated. No, we are not going DAN-ish -- this is the same neurologist who prescribes the four medications Charlie takes plus the fifth for emergencies.

We have been getting a fairly routine amount of sleep though not tonight, this last day and hour of 2012. Charlie has had a great winter break with a quite high amount of bike riding in cold weather every day; he has one more day off before returning to school so it is anticipation-anxiety time and there's the sound of noisemakers, rockets, better not be rifles, in our neighborhood, not to mention a longer than usual full moon. It's a recipe for no, or at best fitful, sleep.

It's all right.

No incident reports were sent home from school till three came in the space of one week, after Hurricane Sandy and a pack of Swedish fish.

It's been a full year of extremes and elemental experiences.

Sunday, December 30, we made a second trip to the ocean and encountered far less snowy roads but 45 mph wind that meant for a very short bike ride prior to which the white car was splattered with salt water spray.

Monday, New Year's Eve day, we went to the place Charlie has asked most to go on this break, the Jersey horse country trail.

He and Jim did not ride much on the trail because it is snowy, icy and inviting to cross country skiers.

They headed for the street instead.

Clear though with icy patches and minimal traffic (the horses were on the trail).

They did a solid nine miles uphill in just above 0 degrees Celsius temperatures.

Needless to say, Jim teaching Charlie to ride ranks as one of the Best Things Ever, in any year, decade, century, era, millennium, etc..

Afterwards, Charlie said no to his customary post-bike burrito and very much enjoyed some shrimp chow fun (he had the fortune cookie first) and a drive by the house he knew as 'Grandpa Grandma's.'

Through to be honest, Charlie called it 'Gramma Gramma house' because when he was younger he couldn't quite work in the "p" sound and the pronunciation stuck.

Just glad that we're all still together; that we stick together,

Wishing everyone some excellent adventures in the new year and thank you, thank you, for sticking with us and reading Charlie's story. Knowing you are all out there -- it means a lot.

He's Not Going to Melt in the Rain

 

I got up around 4-something-am to see what Charlie was up to in the kitchen, his cold again interrupting his sleep, and in the midst of feeling unthrilled at anther early waking thought, is it not better to be up together than not?

I made coffee and Charlie ate some apples, dutifully took the over-the-counter stomach and sniffle remedies I offered, and tried to lie down to sleep and really didn't.

But on a misty, moisty day of constant rain in varying volume, Charlie walked at least two mikes and rode around 23 -- 16 uphill on the horse country bike path which he and Jim had almost to themselves -- with ready effort.

Yes, Charlie is disabled and has profound limitations, challenges and needs for support. He is not delicate, needs no coddling and tut-tutting over -- if anything, he is probably most weary of the latter two. Obviously he needs us and others; he also needs us to know when to stop the hovering.

 

3am

That seems to be the average time Charlie is going to sleep now -- he did so every day but Wednesday this past week, including Friday night. He was cheerful and so far he's been doing fine at school on so little sleep. It's hard to pinpoint the reason. Anxiety seems to be playing a big role and his struggles to regulate his system and those hormones. He hasn't been able to sleep by 10 or 11 pm for a couple of nights in a row for months, if not this whole past year.

The pesky skin rash has resurfaced on the left side of Charlie's face so he needed to see the doctor after school. Jim picked him up in the black car because I had the white one and, just as on mornings when they take yard waste to the town dump, Charlie sat in the front seat, on the highway and all the way home and there was singing and there were grins.

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

Pilot and Co-Pilot

The back of the black car was stuffed with two bins filled with branches and leaves, plus additional branches and leaves, so Charlie had to sit in the front seat to accompany Jim to the town drop-off-the-fruits-of-your-yard work site.

It does give the oft-sung (around here) lines 'talking man to man, talking son to son,' new meaning.

Jim encouraged Charlie to sit in the front seat of the white car -- more leg room -- but we weren't surprised when Charlie took his usual spot in the back. That has been his seat since the time we brought him back from the hospital in a pale green gown with his big head a-bobbing.