We Go With Him

The end of the school year approaches and Charlie tries to hold on

I thought I heard Charlie cracking a knuckle at 3.30ish. He was up, showered and dressed at 5am and we went for a walk in the cool morning air. He was hungry and had a big breakfast including some of the rice and lop cheung sausage I also spooned into a metal container for his lunch. We have our sidewalk back now that the town maintenance workers have removed the yellow barriers and police tape and it was good to wait on it and watch for the bus and, after Charlie was home smiling off the business the afternoon, to stand and look up the street for Jim to come home off the train.

Charlie had had that little frisson of worry look in the minute before the bus came. Perhaps from realizing just then he was tired and had the full school day ahead of him?

He got very agitated and very out of the blue at about 11am. His teacher and I couldn't hone in on an exact cause but (based on his morning hunger) speculated about a stomach issue and maybe him not feeling well overall, plus Charlie sensing the end of the school year. He has summer school but not with his same teacher (he is not teaching this summer).

I noted that change is good for Charlie, ultimately, though tough in the short run.

The afternoon passed without incident with a bike ride (a little less easy-going-ish), a little typing, and two walks though the second one of which Charlie kept up a low groan. I could see the moon was on its way to growing full -- the sky was brighter -- I texted 'groaning' to Jim who met us on the path near our house.

Charlie tried bed and sleep but was wakeful and came down the stairs.

He threw a cup of water from the counter then stood as asked in the living room and started giggling, his eyes darting from here to there and a tv stand (tv-less as we don't have one anymore) was overturned and books cleared off the piano and Jim stepped beside Charlie and the piano remained upright.

Charlie sat in the brown chair and hung his head low. After 15 minutes he wanted to go to his room but we said we would all sit together for 15 more minutes and we did. Then Charlie went up to bed.

Jim sat beside him for while, in quiet.

Actually Typing B

A significant change in the barometric pressure made for much more easeful bike riding, walking and generally being on Wednesday.

After a walk (which involved getting sprayed by a sprinkler in the dark -- hey!), Charlie wanted to 'type B ocean' on his iPad. We did a few rounds of Teletubbies + word dictation and then I thought I'd try an actual type B.

'B-a-r-n-e-y o-c-e-a-n' I spelled out. Charlie typed, took a quick glance at the choices and then said 'type B ocean.'

Well, he had never seen a video -- does it exist? -- of 'Barney at the sea' (though there were those songs from the Imagination Isle CD about the sailor going to sea sea sea ). I dictated 'B-a-r-n-e-y r-a-i-n-b-o-w.' Charlie typed and looked at the screen and said 'bye bye mom.'

We could hear the familiar sounds (first heard ca. 1998) of Barney, Baby Bop, Michael, Tasha, Min and Cathy singing about shapes and all the colors of the rainbow.

 

Typing in His Very Charlie Way

Amid bike riding (22 miles on Sunday for a 50 miles weekend), walking, pacing, stomping in certain areas of the house where the floor has lines (hardwood floor or linoleum squares), and of course, eating (including a frozen fry and apple snack at 11pm because a teenage boy's clock is, truly, in his belly), Charlie has been typing on his iPad.

Lest I give you the wrong impression and you think he is typing phrases and sentences to express wants, states of mind and conversation, he is typing two-word phrases beginning with 'teletubbies' and about 25 (give or take) nouns, verbs, adjectives or prepositions (most in English) that I have discovered are good search terms for a good range of Teletubbies videos. He is also only typing into the little search box on the YouTube app.

It's not proto-communication by any means. It's to watch snippets of Teletubbie videos that the three of us have been watching for 13 years, give or take. I know them by heart as I am sure Charlie does and as he scans the rows of videos I think of Iris Murdoch at the end of her life with Alzheimer's watching Teletubbies and The Fire and the Sun.

Is it useful? Better than nothing?

Oughtn't I to be shaping it into something else, trying to have Charlie type on the Notes or Pages app or showing him the words on a piece of paper?

It's a something of a yes answer to all. I've often thought that if we could find some format that provided Charlie with a motivation to write or read, it might be the key. Perhaps we have found it, or something on the way to it; it is not likely that Charlie will encounter the word 'Teletubbies' too much out in the world.

From all the repetition, he can type 'Teletubbies' on his own as well as 'favorite' and 'Kinderreime,' these being words I had found useful for finding videos he liked, when he was typing on a laptop before he had the iPad. 'Kinderreime' is German for 'nursery rhyme': There is a Teletubbies nursery rhymes video that Charlie loved when he was little and, one day, I had thought to search in foreign languages for videos, on the theory that such would be more likely to elude the copyright police. 

He is also close to typing 'tree' on his own. I can see him smiling sometimes when typing in 'favorite' and 'Kinderreime,' pleased that he is typing on his own.

Where will it lead?

I have been refraining from imposing too much didactic mom-order on Charlie's typing. I've done that before with some things and killed them, undoing Charlie's interest and most likely confusing him with my teacherly ways. Last night I had him type Barney with another word but the results were not of purple dinosaurs but someone's dog.

So 'type B ocean' remains for Teletubbie videos. We've been having a few sessions a day of this, often before bed and the trick is that I be willing to sit with Charlie as he types and types and types. It hasn't yet occurred to him, he could just do it on his own and so I feel like Annie Sullivan may have, or an anamensis.

I am enjoying it. Few have been the times that Charlie has ever shown interest in the written, the typed word.

 

Not Everyone's Gonna Be a Rock Star

Jim and I drove up to the Big Autism Center on Thursday morning to see the spring concert and to see the Charlie's back in his teal blue shirt (just being precise with my colors) as he exited stage right. An aide signalled to us and then Charlie's teacher appeared and said he'd been grabbing and was on his way to being very agitated. The principal came by and told us Charlie was sitting on a bench by the cafeteria with his head down, same as he does at home in the brown chair.

We listened to the students sing 'The Rainbow Connection,' 'Candyman,' and "Singin' in the Rain' (that would have been Charlie's song). Charlie, on being asked if he'd like to go to the concert, had said no and we slipped out.

After Charlie got home, the note from his teacher said that he'd gotten in a good mood as soon as the concert was over and been in the best mood he'd been all week.

This spirit prevailed through a bike ride (including heavy-duty honking by drivers -- happens when you bike in city streets) and after a nap. Charlie and I went for a walk, he ate a little and typed a lot on his iPad to see videos. He went to his room and ran down the stairs a couple of times and was asleep before midnight.

Week-long stage fright?

There have been some five concerts at Charlie's school since he started there and he's participated in about half.

Not everyone's meant for the stage -- not that Charlie likes just to be a watcher in the audience.

As is known, he'd just rather be in motion on the road.

 

 

Commencement and My Post-Birthday Boy

At graduation on Monday for the small college I work at, I clapped and smiled broadly -- beamed -- as certain students filed by, some of whom I could still see sitting in my old office -- just arrived days before from Bulgaria or Nepal -- scanning lists of courses and listening to me explaining the core curriculum requirements yet again; others whom I spent 10 days with in Greece on three separate occasions; and yet others whom I listened to so often, talking about GPAs, closed courses, essay deadlines, their parents, the next test, the job that seemed so good that wasn't working out. I sang 'The Star Spangled Banner' and what I knew of my college's alma mater and took photos and clapped some more.

A colleague -- he and I started teaching at the college in the same year -- observed that he didn't express his congratulations so exuberantly.

It wasn't the moment to explain it to him, but, what else would you expect from someone who's spent 15 years cheering on a big-headed baby become a boy become a guy to hold up his head, put one foot in front of the other, say 'uh' when we said 'uh,' point to the letter W, keep his feet on the bike pedals, eat two bits of an apple? from someone who says to herself 'progress' about her teenager who throws a box of Classics books then sits, crying and moaning but sits, in a big brown chair, instead of slamming his head on the hardwood floor?

Charlie is always with me and so I felt no surprise when I saw the number for the Big Autism Center flash on my cell phone, as the 'College of Arts and Sciences/School of Business Administration' students were receiving their degrees. I got up, climbed down the platform and went backstage (graduation was held in a large entertainement venue): Charlie was having post-birthday syndrome: too much to eat of what he likes too much, lag after a happy afternoon of being social, anxiety because my parents leave on Tuesday.

His teacher said he just didn't look like himself. We also talked about the wet, rainy weather that was ruining most of the photo-opts for the graduates. Charlie's teacher said he would call in an hour and let me know how Charlie was doing and I went back to my seat and calculated that by the time I made a grand exit off the stage (yes, folks, the show always stops for Charlie), dropped off my cap and gown (so I wouldn't receive Reminders that I had failed to do so), driven fast up the Garden State Parkway, run home to get Charlie's meds (I know, never leave home without them), hurry up to Charlie's school, it would be 1.30pm at the earliest and Charlie would be almost ready to take the bus home.

I watched the students file by and four other people exit from their seats but not because they had calls from the BAC.

The BAC called after, as stated, an hour: No need to pick Charlie up.

He made it home fine on the bus and he and Jim got up to six miles of a bike ride before soaking rain led them to turn around.

That must have unsettled Charlie a bit along with everything else and he went from over-the-top happy at dinner to impassioned crying.

He sat in the chair. Jim and my dad and I sat near by and my mother finished what she was doing in the kitchen and came to sit too. After a half-hour, Jim and Charlie and I went on a walk-run and his stomach was better and he ate up the bowl of shrimp in special sauce my mother had made, dipping in a piece of sushi to get the last tasty drop.

Charlie and I walked and ran again and he stood looking around him and at everyone and went to bed.

Change is Change

Around 2pm, I saw I had just missed a call from Charlie's teacher and knew he must have had an incident. It's been several weeks since Charlie got upset at school -- it's really been a good school year for him behavior-wise (which is not to say there have not been some intense storms). I emailed his teacher and, besides Grandparent Anticipation (and possibly birthday anticipation too) and chronic sleep woes, thought to mention a change in our household, Jim and me being done teaching.

Meaning that, Jim will be home every day for a bike ride.

Meaning, a change -- and, even though it's a good change, Charlie was wary.

This was apparent to me as soon as he got off the bus. His face had the troubled look and when I said we could wait for Jim to be home, he called for the car.

At first, as Jim wouldn't be home for an hour, I said ok. Jim texted it would be best not to get in the car. I mentioned waiting again, Charlie pressed for the car.

Then he stood at a certain spot in the kitchen and called for a long local bike ride.

Smiling, we made brownies and Charlie had a big snack and then a long slow bike ride with Jim.

The Storm Passed and the Sea Calmed

In the past, after a big storm, Charlie has woken up still stormy and we've slugged through the day(s) together until things calm -- sometimes it has taken a week, plus.

Sunday he slept in till 10am. We all went on a walk, draggily. Then he called for a bike ride, off he and Jim went, I dashed to the store, Jim texted me Charlie was teary. Then Jim said Charlie had called to go to the hamburger stand they pass on the ride -- which we once used to go to all the time when Charlie was younger -- so he and Jim had burgers 'n' fries on the metal counter amid a number of bikers (of the other kind of bikes). Charlie cheered up.

Was it a sort of conciliatory, nostalgia gesture?

He was tired but gradually cheerier throughout the day. He seemed on the verge of a nap in the afternoon then woke after I made another fast dash to the pharmacy (it's only 3 minutes away). He wanted his favorite burrito and we got him one and then, after a walk, he must have run down the stairs from his room to check that I had indeed put his lunchboxes, with the juices, in the shelf on the refrigerator a half-dozen times at least.

When I called this morning that I saw the bus, Charlie ran out (in mid-processing mode) and stationed himself on the sidewalk, looking ardently up the street and he ran as eagerly on.

 

A Boy and His Bus

 

It seems we have gone from buscapades to a boy who takes the bus both ways.

 

Post-Parent-Teacher-Conference

 

Despite his cold, Charlie insisted on a neighborhood bike ride, as if to be totally assured that Jim is indeed home (and not in Boston). The ride got off to a slow start and then proceeded pleasantly, with singing and banter.

Despite my coughing, the conference with Charlie's teacher, aides, behaviorist and speech therapist was productive, informative and easy-going. Charlie likes being there and is liked; his new speech therapist was his classroom aide when he started school in our town back in 2003 and, afterwards, his home speech/ABA therapist and sitter, for some years. I said, we could only wish there would be a BAC for kids after they turn 21.

It is sort of incredible how settled and at home Charlie is now in school, after an odyssey through many schools and towns.

Charlie was asleep when I came home. He woke around 9pm and said he wanted a walk but with his sniffles and the cold and wet outside, we suggested that we do that tomorrow and, after sitting and then standing, he went back to bed and to sleep.

 

 

A Late Bus Before Bowling and Bikes

 

Charlie was so excited to go to school after four days off that he woke at 4.50am on Monday, had some breakfast, asked for a walk (we all three went). Then he went back to bed until Jim roused him at 7.25 just in time for the bus.

Only, the bus was late by 40 minutes, apparently because the aide was late to show (it's never happened before).

I had gone into work; Jim and Charlie waited together in the sun in out front yard and, at 10 minutes after 8, the bus came and Charlie went onto a great day including a bowling field trip, a spirited wait on the front lawn for Jim to return (Charlie and I took turns peering up the street), a vigorous bike ride in the wind, a trip (with all three of us) to get groceries (well, sushi for one of his lunch boxes).