We Go With Him

An Epic Day In Its Own Way

St. Simeon Stylites on his pillar and those hermits and monks who withdrew into desert spaces or mountaintop caves for Contemplation in Silence: Just as life with Charlie has been showing me how it is possible to function without writing and reading the written word, so Charlie's capacity for standing pretty much in one spot for hours on end (6, 7) reveals how Simeon and all the non-merry band of reclusive types could engage in their exploits.

I'm not trying to romanticize Charlie and his doings. Wednesday, these were not very varied:

Long bouts (measured in hours) of what I feel should be called Extreme Stim, in his room, the living room across from the front door, the kitchen, the bathroom.

A late morning bike ride towards the latter part of which Charlie, legs starting to shake, ran from off his bike and was headed for some houses but Jim grabbed the back of his shirt à la Athena taking Achilles about to draw his sword on Agamemnon by the hair and Charlie was talked back into getting on his bike without a bite and made it back home.

A first.

Maybe all that was connected to Charlie keeping his bike helmet, skullcap, gloves and ankle strap on for the next 6 or 7 hours as he stood and 'went through his (almost non-moving) paces.'

Around 8pm he polished off most of the watermelon in the refrigerator, after not eating much (a few apples) all day.

He talked a little which was a lot as he barely said anything on Tuesday (sign of a sore throat).

Though I'd seen Charlie yawning, he is up and it's late night (3am ish) shower time.

(Pace pole-sitting saints, indoor plumbing rules.)

After the Vessel Was Broken We Got Out the Glue

I woke Sunday morning hearing Charlie's voice saying iPad. I went for a run up the hill past my parents' house in Oakland.

Charlie and Jim rode bikes and walked, once on Saturday night, three times on Sunday and he said mommy. He had mommied through Saturday night and was sullen on Sunday and after the third walk at 9pm, he banged and threw -- my table was overturned; I had removed some papers in anticipation -- and bit and he ran out and banged on the same car of the same neighbor.

Jim texted me when my parents were driving me from the vineyard where the wedding was, past the research lab the town was known for before having vineyards and a golf course and a huge edifice of a Target. He said he'd wanted me to enjoy the wedding and most certainly I had but I would have still I think.

My cousin was very beautiful in her long white dress and the ceremony was beautiful. Her husband is from Israel and the wedding facilitator explained some interpretations of the smashing of the wine glass and saying Mazel Tov. I thought of how objects made of clear glass have become something OCD Charlie throws, smashes, as the facilitator was talking about smashing the glass as a reminder, perhaps, of the world's cares amid the wedding joy.

I have not read much of the Kabbalah but I thought of the Breaking of the Vessels.

I thought of how my sister gave Charlie a toy baby Pegasus when he was a baby: Someone had made a montage of photos of my cousin and her husband with Disney clips and it started with baby Hercules, then there clips from the Little Mermaid, Sleeping Beauty.

Sweet and funny and I had some very good talks especially with a cousin, and learned about no-gear biking (my cousin's son showed me the groove on his shoe's sole from using it to stop the tire), and I thought about how fairy tales have the cartoon versions and the ones in German, and the daily work of putting the vessel's bits back together.

Charlie went to sleep after Jim showed him photos of the wedding on Facebook.

A-bike and Aut

Charlie and Jim did 15 miles in 90 minutes on the D & R Canal in central Jersey, ending up at Lake Carnegie.

I should note that---while these rides are a lot of fun, have played a huge role in allaying some of Charlie's big-time behavior troubles, and, as far as we can tell, seem to give him a tremendous feeling of accomplishment---the rides (as Jim notes to me) are not 100% peaceful-easy-feelingness and glorious glory in the pure joy of motion. Charlie has vocalized his discomfort and even distress (usually by repeatedly saying things like 'Barney video'---he often calls for things that once comforted him and that he no longer has when he's feeling anxious) quite loudly. There are other riders, walkers, etc. on the trails and they're not (by their facial expressions and bodily movements) exactly peaceful-easy-feeling on encountering my boys. Jim has also noted that things like 'bike jettisoned into canal' or 'boy making a beeline off the path and into traffic' are never out of the possibility.

Maintaining the peaceful-easy-feelingness while a-bikes requires as much spiritual discipline as in any moment anywhere with Charlie. There is the advantage that Charlie is already in the midst of getting aerobic exercise, which has (we have proof!) become a known factor in helping him to stay calm and carry on.

Of course, there are inevitable disadvantages when one is a-bike in unfamiliar territory, amid strangers, and by a body of water, and a mossy and buggy one at that. Hot weather and strong sunshine can of course contribute to discomfort for anyone.

Anyways, all's well that ends well. No bikes got tossed anywhere they shouldn't have been. When one goes 'aut,' one has to deal with what one encounters. Monday I had the chance for a little nostalgia trip as, en route to our pre-arranged meeting point at the river and Alexander Road, I passed through my alma mater, where I could see preparations underway to welcome the class of 2014.

And most of all, a very fine ride was completed by Jim and Charlie, a-bike and out, aut, in the world.

It's a Mystery

"It's a mystery" was what Jim said Sunday morning in answer to the EMT who had just taken Charlie's blood pressure, after Charlie had gotten very, very upset at the bagel store. Jim said this as he and I were trying to explain why we thought a major neurological storm had befallen Charlie. We talked of seizure activity, of the imminent change in Charlie's school placement (Charlie's been talking about the kids in previous classrooms and teachers from long ago all weekend). And we owned up to saying, yeah, we often just don't know what happens with Charlie.

Monday Charlie woke at 2.30am and went back to sleep with Jim soothing him. I roused Charlie gently around 7.30am. Jim had run to catch a train to teach a morning class. I set out Charlie's clothes and told him I'd load my things in the car. Then I heard knocks, thumps, cries. Stomps.

It wasn't good.

What helped to end it was when Charlie came out of our apartment, still crying and so, so, agitated, and I directed him to the field across our parking lot. Once he got to the edge, he ran down the little slope and kept going, full steam ahead, till he came up the slope on the other side and the trees. He turned around then and looked at me and ran back more slowly.

When Charlie gets so very upset as he did in the bagel store---and we were in the cramped part in the back between the bathroom and the "to go" counter---all we can think to do is to get him out as fast as we might. And now that my boy is as big as the doctor who delivered him once predicted he'd be (due to his big baby feet)----Charlie's gaze is eye to eye with the top row of the grocery store shelves; I've spent a lifetime clambering onto the bottom shelf to try and grab some desired item on that top shelf, can't believe my own boy is that tall---now an upset Charlie means, we need to get Charlie to a big wide open space (preferable grassy or sandy; parking lots with concrete will not do) as fast as possible, and let him run, let him flail and stretch out his body as much as whatever's going haywire in his head requires until he's peaceable again.

Monday morning after his run Charlie got quietly into our car after changing his socks, wet from the grass. He smiled hesitantly as I drove and looked at the trees gone yellow, orange, and red. A detour due to roadwork only led to him looking around more. His eyes got big as I pulled up to the circular driveway in front of his middle school.

Yes, Charlie still thinks he needs to be there, regardless of everything. It's the school he's known for over a year, in the town that Charlie has lived in for three years. In the school district that is in effect expelling him, and (we quite suspect) forever.

Jim and I can't say for sure, but we're quite certain Charlie knows this. And I think, too, how all this came about, is at least a little baffling, a little mysterious to him, and therefore the source of consternation and confusion that makes you just want to run. "It's a mystery" in the sense of something that can't quite fully be grasped, no matter how much you put your mind around it. (And I don't mean to draw on the notion of "autism as a puzzle (piece)" that one regularly hears about. Certainly there is much about Charlie and why he does what he does that we don't grasp; certainly there is much about Jim and me that I sure he finds at least a bit perplexing.) (Ah, the perils of parenting.)

The rest of Monday was stopping at the post office, grocery shopping along with half the population of our town (guess everyone wanted to start the week with a full pantry), a bike ride with Jim that ended just as the sun was setting. Charlie helped himself to some (lactose-free) ice cream and then told me "give, Mom," when he'd had enough (the ice cream was still quite frozen and hard). He slumped over with his head on his hand and I brought over his old yellow blanket, which Charlie wrapped around himself. I was cleaning up the kitchen and, on glancing Charlie's way at one point, found him looking up towards me (full eye contact; I didn't do anything to ask for it) for a good two minutes, and peaceful and relieved he was. He asked to go to bed before too long and was sound asleep, without any melatonin.

I think we'll be visiting the field, and some other ones, very soon.