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.

Change, However Little, Is Always Felt

 

After a late morning walk (because Charlie slept in), I mentioned that he might leave his sweatshirt in the car when he and Jim rode bikes in Jersey horse country as it was going to be warm (88 degrees). The above photographic reveals Charlie was able to make the sartorial shift.

He did not do so on the two other walks and one bike ride (30 mile day) he did.

Little things seem t be causing Charlie the biggest disturbances. Friday he and his bike stood still in the street for 20 minutes because a cement truck was parked at a slant three houses down, as a neighbor was putting in a new walkway. They are very kind neighbors and, once Jim and I could see that Charlie was not budging with the truck in his way, asked the truck briefly to realign itself, till Charlie biked under the cement pouring shoot and down the street on his way.

On the way to and from the bike path, Charlie called for my parents. The second time, his distress deepened and he cried; I think he remembered they had been with us when we were last at the trail.

He held it together and then got the sads again in the evening. I sat at the bottom of the stairs in the brown chair and waited, Jim nearby.

Half an hour passed and Charlie called me up, wanting to type on his iPad. And a snack.

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.

 

 

As When a Butterfly Flaps Its Wings

 

Since last Wednesday night, Charlie has been going to sleep at a reasonable hour and sleeping soundly.

Tonight he is wakeful. But there are a cloud of circumstances for him to contend with, from my parents' departure Tuesday to a predicted week of wet, heavy humid air, rain and grey skies, to Jim and me being finished with teaching and therefore home for the summer.

The latter was a change that Charlie's teacher reminded me about when he called in the early afternoon. Charlie has gotten upset in the morning; aside from the other reasons, his teacher noted how us being on 'full time home mode' had unnerved Charlie before. It's the kind of change that certainly has benefits (no bike ride-less days) but for Charlie, change (minute or grand) is change, is something to get used to.

Charlie was frowning getting off the bus and zoomed upstairs to check and see that yes my parents were gone. He cried out and stood mopily. As per his request, I got out the bikes with him watching me and he and Jim did the full 12 mile route: The sky was mostly grey but there was no rain.

Charlie got in more exercise -- two walks -- and I dictated several rounds of combinations of words for him to type in the YouTube search box.

For a time, he took up his post in the brown chair at the foot of our stairs, a few minutes before 1 am, then went up to bed  and right now the music from his iPad is 'Bella Notte.'

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.

The Night Before

 

Jim and I had a feeling Charlie would be (1) anxious (knowing that my parents arrive tomorrow) and therefore (2) non-sleeping.

Well, thanks to the past several weeks, my view of what 'sleep' means has completely changed into whatever hours or parts of hours can be acquired, a little there and a little here.

Thursday night Charlie went to sleep about 1am and woke just before 6am. I'm thinking five hours of sleep a night is all he really needs most nights -- it's all I really need -- and I'm more hoping that Charlie can, at some point, return to a fairly consistent (albeit short) schedule of sleep.

School had been good but after a bike ride and dinner, Charlie was clearly wrapped up in nervous anticipation. I made him a new calendar to show the days of my parents visit. Charlie paced back and forth, sometimes looking at us.

It was clearly dark and then Jim proposed a bike ride and Charlie eagerly embraced the thought, only to spend half an hour stomping, staring at his feet, staring at us as he demanded a long local bike ride.

Considering the hour, something a little shorter was in order. Charlie was slow to get started then off he and Jim went, in glow-in-the-dark vests and with lights a-flashing.

It was a cool, crisp night. Across the street, the two boys whose oldest brother is just finishing his first year of college were up to something in their driveway with their skateboard ramp. I was reminded of the last night my students and I had spent in Athens last year, knowing we had to get up early to catch our plane and wanting to take one last walk to see everything, while thinking about our impending going home.

It was a fine ride. And then I went up to check on Charlie who'd said 'bedtime' and found that a quick wash of some items (like a big fleece blanket) from his bed, was in order.

Waiting, Charlie stood then took our suggestion to sit on the blue couch. Then he fell asleep before his blanket and some other items, hot and fresh, came out of the dryer.

They're on his bed now.

 

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.

Truly, Sleep Is Only For the Weak (And Only Once a Week)

 

I was prepared for Charlie to be on one of his 72-hour sleep cycles such that, after staying up till 4am on Tuesday morning, he did nearly the same on Tuesday night.

Charlie was really on his way to pulling an all-nighter Monday night. Just as he seemed (at last) settled in his bed with the sound of ocean waves playing on his iPad, I'd hear the peppy beats of 'Let's Get Together' (Annette Funicello version) playing. In past times, Charlie playing such high-energy tunes in the wee hours of the night has resulted in him getting up and running around rather wildly, then banging his iPad or his head or tossing dishes etc. while in revved-up hyper mode. So on hearing the music pop on about every 15 or 20 minutes from 1 - 4am (or so it seemed), I got up and said as sootihingly as I could that he needed to get to sleep! As the bus would be coming sooner, and sooner.

We've learned that Charlie has an uncanny ability to get up for the bus no matter how late he sleeps. So Jim got Charlie up just a minute or two before the bus pulled up on Tuesday.

He ran off the bus smiling in the afternoon, to ride bikes and ask me 'type B ocean' and run on his walk with so much vigor you'd never think this child had had two and a half (probably fewer) hours of sleep.

Proof is in the pudding: By 10pm, Charlie was soundly sleeping.

Jim and I have figured his extreme wakefulness is the manifestation of the anxiety he always feels prior and post my parents visiting. Generally bouts of grandparent anxiety have involved many other and more difficult behaviors than the two on Monday night, furniture-knocking-over and box-of-book-throwing -- if that is the only ways he shows his worry, it counts as progress: I'd far rather have to drink an extra round of coffee than navigate through a severe behavior storm.

But we'll do that too, if need be.

 

It's Always the Future Active Participle Around Here

After sleeping long and sound on Saturday and Sunday night, it wasn't surprising that Charlie was awake past midnight on Monday. He'd been tired at school but still had a good day. The sky had been gray and portending rain (and raining some) but he and Jim completed all the twelve miles of their bike ride.

He was just this bit on edge as we drove to get some groceries; perhaps because last week the store had been out of his preferred type of crackers in the red box?

I ran ahead and saw some boxes on the shelf above the frozen desserts. Charlie smiled to see them too and the rest of the evening was full of munching, walking, running, music.

The Kinks were playing as midnight neared and I was trying to get my mind in gear to write about jobs for autistics. There was a loud noise, the too-familiar sound that some piece of furniture had been overturned. I ran up the stairs, Jim came up too, Charlie sat on his bed staring a bit blankly. Five minutes passed and he suddenly zoomed down the stairs and overturned a box of books.

For 45 minutes he sat in the brown chair and started to doze off, then went up to his room and then came almost an hour of transitioning him from on-the-verge-of-upsetment* to something calmer. Nothing else flew, there was no banging of heads or iPads. I did offer Charlie an apple slice or two. Jim gave him a shave. Jim went downstairs and typed an email. I sat on the blue couch and read about the singer of tales.

Charlie called several times for my parents, Gong Gong and Po Po: Of course he is all anticipation, as we ourselves have anticipated. We looked at the calendar and counted off the days till Saturday when they arrive.

In the interest of getting him a bit of sleep before the bus comes -- he is quite awake at 2am -- I am signing off. I will write that story about autistics and jobs on Tuesday -- a topic very close to our thoughts all the time. Charlie has been saying 'bus' and much hangs on his knowing that it is coming at 7.40am and the day it does not, we have to be ready.

Update, 7.55am. Charlie went to sleep at 4am. Hopped up like a rabbit at 7.40 when Jim told him the bus was here.

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*Excitaturus -- a future active participle -- in Latin.

 

How All Occasions Can Inform Against Him

 

That is a riff on Shakepeare's Hamlet (Act 4, Scene 4): Friday evening, everything added up to a weepy Charlie:

Humid weather that made the air wet and heavy. Grandparent anticipation. A long line and ballons at the burrito place, the latter because Saturday is Cinco de Mayo. The effects of lack of sleep. A full moon. A possible cold and/or allergies leading to a possibly runny nose; Charlie has been making elaborate coughing sounds that could be a sign of such or just him making elaborate coughing sounds. A great week at school (i's happened more than a few times that Charlie, in counter-logical fashino, has had a super day or days and then been all unease, perhaps the result of having tried so hard to hold things together and do good?).

He cried as he waited in the car with Jim while I got the burrito. He was hungry -- he hadn't eaten most of his lunch -- and ate quickly then sat, Barney playing on his iPad and his face stricken. I asked him for the iPad and, after Charlie slowly passed it to me, switched off the jingly jangly kiddie music for some jazz, the Blues and the Abstract Truth album. 

It is never good to have a distressed child in the car and we kept our cool. Charlie made it home ok (good thing Jim is a steady driver however much backseat distress there is) then further signalled his discomfort by asking for not one but two walks (both revealing how very full the moon is).

Jim accompanied Charlie and me on the walks, so that Charlie (racing ahead as ever) kept looking over his shoulder. In the house, there were no flying objects but Charlie did drink about ten Capri Sun juices in two spurts.

He went straight up to bed after the second walk and fell asleep with a Wiggles CD loudly playing.

How much of the day is spent navigating such rocky shoals and whirlpools and seeking to help Charlie steer himself into safe harbors.