We Go With Him

No To the New (Yet Again)

Charlie has a lovely new maroon bike!

We picked it up after a ride on the Jersey horse country trail was cut short on realizing Charlie's beloved, beat-up black bike had a front wheel flat. Charlie and Jim had picked out the new bike earlier in the week and we stood in the bike store (which smelled agreeably of rubber and oil) as Jim purchased it and also a new front tire.

Following several no's, Charlie sat on the new bike for about 11 seconds. Then off and back to his old, own bike.

I anticipate the usual slow process to him accommodating to anything new.

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.

 

Process

 

My cousin's kids sent Charlie this très cool gift: A box of paper airplanes! 

I launched a few for Charlie and handed him one; he started to unfold it. On noting this to my cousin, and that it helps Charlie to see the process of how things are put together (and that Charlie has mostly encountered paper to read, write or do assigned art projects on), my cousin sent me to a paper airplane folding website and offered to give us more directions from some books.

It must sound weird to Charlie to hear 'paper airplane'? Two words that, in his existence (really, in the world), don't or oughtn't to fit together? Airplanes deliver people and I'm sure he remembers sitting in the huge hull of one. Paper is light, rippable, to write or mark on.

Charlie wanted to get out and go (as usual) this Sunday morning. I ground my coffee, cut up another apple, let the water sit in the coffee pot to take in the flavors. 

Rather than tell Charlie in words with will o' the wisp staying power, it helps (it's best) to take the time to show the process of how things are put together.

Farm Families and Floating Signifiers

'Farm Families' is the name of a game that was one of Charlie's favorites and that he has been saying the phrase at decibel level-volume, at school and at home. While the phrase is steeped in meaning, and emotion, for him, it is become a floating signifier, its signifié -- signified -- doubly erased, the toy with its numerous plastic parts including small figurines of farm animals (horse, sheep, pig, cow and chicken), plastic haystacks, and a tan-red plastic base that played animal soumds or 'Old McDonald Had a Farm" having been long ago cast into the garbage or given away.

In a larger context, 'Farm Families' is no more as Milton-Bradley, its manufacturer, has (the last time I checked, some years ago) renamed the game 'Old McDonald Had a Farm' and packaged it in a smaller square-shaped box instead of the generous rectangular one that held Farm Families.

So when Charlie says 'Farm Families,' it sounds as if he is saying something about, indeed, a farm and something about families provided, of course, that he is hitting the /f/ sounds (a very tricky one for him resulting in him being in the double digits when he did not say his last name was 'Disher'). Jim and I have been able to intervene in that word's sense of 'coming' (from the Latin verb venire) 'between' or 'amid' (from the Latin preposition inter), supplying the definition -- of how one of Charlie's first speech and ABA therapists, Tara, bought the toy to give him variety besides lotto and other matching games, Barnyard Bingo, and Lucky Ducks; how the ordering of the haystacks and the plastic figures and the sonic base took precedence over playing the game so that, when the alignment was 'off' by a hair's breadth, Charlie swiped it all off his blue Little Tykes table on which he then hit his head.

The signifié is a story that just took a good part of the previous paragraph to detail.

For Charlie, and for Jim and me, it always exists when he says and hears, and when we say and hear, 'Farm Families.' 

Otherwise, it's a floating signifier unattached to meaning or, too, to any thing.

it is somewhat ironic that a phrase and its meaning should be so tightly wound for him, given that pegging signifiers and signifieds together has been quite the challenge for Charlie. He did not, as the cheerful Indian doctor at the St. Paul Children's Hospital explained that children do after checking 18-month old Charlie's ears for infection, hear me say 'juice' while holding a cup of such in front of him and connect the sound (signifier) to the object it referred to (signified). Starting when he was a toddler (after diagnosis, after the initial chaotic starting-up of therapies in a home program), we started saying signifiers (words) to Charlie and, by association and positive responses, he learned to connect them with signifieds (generally objects you could hold up or individual people  -- abstract concepts always posing more, many difficulties).

In behavioral speak, 'floating signifier' is something like 'noncontextual language,' sound removed from meaning and thereofore, to those not in the know), meaningless, so long ago was it sundered -- the connection cut -- from what it was referring to.

None of this, of course, stops Charlie from saying 'Farm Families.' Accordingly, we provide the backstory, as long as, and provided that we can.

 

So Far, a Year For Stainless Steel

 

It's day four of MMXIII, pridie Nonibus Ianuariis (the day before the Nones of January) --- the 11th day of the 12th month according to the Chinese lunar calendar -- and, it has only been four days, but so far, a pretty good year.

I discovered a whole world of stainless steel coffee products meaning that I will not have to make my coffee in the slow makes-for-a-good-cup-but-takes-forever-on-work-mornings way: A few years ago, Charlie swiped two coffee makers (the drip type) off the kitchen counter and flung the glass carafes (he still has an OCD thing with anything made from clear glass -- he grabs and throws) so that was that. It (the new stainless steel coffee device) will be something that can be moved around so I can keep the counter clear; Charlie likes to snack there and I put out some of his meds on it and he's very good at taking them. He's pretty good at clearing off crumbs from the counter though not all of them make it into the garbage can.

Jim got me the best Christmas present and, while Charlie has been exercising his vocal cords at decibel levels (at school, so his teacher called, noting it was just loud -- sort of an understatement, that -- talking and nothing more; rows of neighbors must have heard Charlie intoning 'Gramma Grandpa house' on our 2nd walk past their Christmas lights last night), he's talking.

 

 

Best. Purchase. Ever.

There are times when you don't need a yellow jacket (Saturday, Bayonne waterfront).

 

 

 

Realities (rain, damp, dirt, gravel, general muck, waning hours of daylight as we approach the solstice) being what they are, there are times (the morning after) when you realize a purchase was the Best. One. Ever.

 

 

 

 

45 mile weekend; 50 miles including walks. 

Statement on Sensory Stuff

"Getting sensible about sensory dysfunction" means looking beyond the weighted vests.

'Stuff' is generally not the solution.

How a Boy of His Own Rituals Managed on a Day of National Ritual

 

Until about 5.30 pm-ish, Charlie handled the holiday and the inevitable disruptions its traditions and rituals impose on his routines and ritualistic nature. He actually smiled in the late morning as we drove up to the burrito place with the 'closed' sign in the window (we proceeded to a nearby McDonald's that was open only to be told we had to wait all of three minutes to get Charlie a hamburger as it wasn't yet 11 am) and was game when we sought out a far less-preferred, non-Jersey City Vietnamese restaurant. He had displayed his anxiety about the day by being in 'hurry up please it's time mode.' waking early and launching immediately into a walk then a bike ride then a bike ride then a walk.

He asked for a third bike ride around 3 pm and waited well with a timer only to say 'no' to the ride and thence followed some hours of mounting uneasiness (connected in part to eating about two dozen pieces of paper-wrapped chicken and about two dozen prawns in the space of an hour -- I did make sure Charlie drank a lot of water amid it all; he has no sense of 'portion control' or 'if I eat all that my stomach will feel bad afterwards'). He sat for perhaps five minutes on the couch and a certain flat affect in his face led Jim and me to take some precautions.

Charlie's mien eased up a bit and, foregoing any of the Thanksgiving meal -- that ritualistic food not being part of his ritualistic-ness-- he spent over an hour upstairs with the shower turned on and the ocean waves playing on his iPad, in a routine he occasionally embarks on when his stomach is not cooperating.

I do think he is setting up some kind of sensory re-memory of being at the ocean with such. If not being in the waves, being in the outdoor shower (that every beach house has) -- Charlie used to love to take endless 'hot showers.'

Afterwards, he went to bed after I had helped him put his room back to rights, just as he likes it: Wednesday might, he had wanted to sleep in the room where my parent usually do. They had switched all their things into Charlie's room as a result and changed the bedding and Charlie was especially insistent that I do 'green pillows' -- put certain green pillowcases back on the pillows on his bed. We couldn't find these initially, only to find them in the closet and then Charlie was relieved.

O! Bessed rage for order, pale Ramon, / The maker's rage to order words of the sea...

 

Saturday Together

Charlie woke around 3am on Saturday so, after working through a very agitated run-across-the-floor-sudden-and-fast moment, we were not quite the first at the barber's; among the brunch crowd at the Jersey horse country general store where there was again carrot cake (that area lost power for two weeks so its stores were much depleted last weekend); much appreciative of sunshine and relative warmth on a 16-mile fast-paced bike ride that set Charlie up for a four-hour nap afterwards; all amenable to a night drive through the woods and over the hills to a Golden Arches that is a little more shiny than the local branch; all pleased to spend the rest of the evening reading books (Jim and me), mixing up another crumb cake (me), lovingly inspecting photos of toddler Charlie and Barney (all of us) with Carlie tapping the purple guy thoughtfully.

Charlie said 'Barney' with a certain pleased and content ring and then, after I had (his request) put his big blue fleece blanket in the drier, sat with the soft bundle in his lap while sitting in his brown chair, before bedtime by midnight.