We Go With Him

Done On His Own

It was 4am when, daily melatonin notwithstanding, I got Charlie to lie down on his bed on Friday morning and 7.30am when he got himself up to catch the bus. It was 10.45am when he woke, alert and ready to go, at school after much-needed sleep.

 

It was around 8.45pm, on a second evening walk after the requisite bike ride and a first walk that we detected a bit of a breeze and a draft of older air after a toasty 97 degree day.

These occasional all-nighters just seem the way of it with Charlie about once or twice a month. For the most part, taking melatonin daily around 8pm seems to be helping him to get into more of regular sleep pattern.

He was a bit weepy as Friday wore on, I am semi-sure because he was, obviously, tired. He is having a resurgence of interest in the Kinks and listened to them quite a bit while pacing and munching the occasional apple slice. Of course he needed to go to bed; we continue to abide by the reverse psychology principle and didn't encourage him to do so.

It was 9.30pm when Charlie did on his own: On his own is always better.

 

 

Weathering It

Summer school (all 2 days of it) has been good, a bike ride was good, a trip to get groceries was good even though there were still none of Charlie's preferred crackers (my mom found some in California and sent two boxes), two walks were good.
The weather pattern is not looking good. 96 degrees or some such is predicted for Friday and thunderstorms.
Due to this (we suspect) and the hot bike ride and still having a few more days of the antibiotic (Charlie's cheek is almost healed) and the fact that my parents are visiting in a week -- Charlie's anxiety about the good times always starts about a week in advance -- he is up past midnight or, the night wearing on, 1am 3 am -- I do diagnose some butterflies in the stomach and just some stomach twisting from the heat and rising humidity.
Totally reasons I'm very glad I decided to spend this summer at home and only trekking into Jersey City for Liberty State Park bike rides.

In Golden Light Just Like the Stories Tell Of

And so, just as depicted in the photo, Charlie stepped onto the school bus amid a shower of golden light...

Ok, well, not exactly, but you get the picture that all parties were pleased (including the bus driver, who is Charlie's usual bus driver, as he was waiting on the sidewalk ready to board instead of dragging himself out of bed at the last possible moment).

There were some tears and whimpers on an afternoon bike ride and, after two evening walks, while sitting on the beat-up blue couch watching a certain Barney video about colors and shapes (possibly the first Barney video Charlie ever watched).

On the bikes, Jim kept him moving; in our house, I offered steady-voiced, familiar words.

Charlie cheered up and after two days that were short on sleep, he was slumbering by 9.30pm

Can't Sleep Guess Why

Wasn't surprised Charlie woke at 6.30am.

Or that he immediately requested a bike ride after a walk.

Or that he wanted lunch at 10.30am.

Or that he was eager, eager, eager to go to Jersey City to ride bikes such that, when I, in the way of moms wanting to throw one last thing into their bags just in case, took too long to hie myself into the white car, he cried. (He got over it; the ride was great on a day of perfect temperatures and beautiful sky scapes -- he is very tiny in the photo above.)

Or that he has been doing a lot of standing, staring at his feet, and making breathy whiish noises.

Or that it is past midnight and he is still awake. (Charlie did eventually sleep, an hour later.)

Back to (summer) school transition anticipation anxiety, right on schedule.

 

An Actual Stormy Adventure

Jim and I have thinking we ought to expand Charlie's and our activities beyond the usual rounds of bike ride, walk, walk, bike ride, walk. We have been talking of taking Charlie into New York, as we once used to almost every weekend, to check out the High Line. Charlie made it in there shortly after it was first completed but we haven't really been inclined to go across the Hudson with him, in no small part because Charlie seems quite content away from the industrial noises offered by NJTransit and the subway, the wail of the sirens and the roar of the traffic, the multitude of behaviors and voices and faces of urbanites.

I did drag him, once upon a time, into the Met and Charlie has ridden his bike in Manhattan. But over time it has become quite apparent that Charlie's sense of adventure is well-served here in our fair county in New Jersey.

Monday, with two days to go before the start of ESY, there was a subtle rise in Charlie's anxiety level. He kept checking the refrigerator, to see if the lunchboxes were there (they are still on the kitchen counter). He heard me talking to the bus driver, who called to tell us she would be by at 7.35am on Wednesday. He noted I had bought an everything bagel -- I usually put one in his morning snack lunchbox.

I had bought the bagel to give him a non-verbal cue that a return to school is imminent and I think it did the trick, based on the higher rate that Charlie kept checking the refrigerator after he saw it.

Getting him to think about other things was one reason we considered a New York trip. But the day wore on and Jim and I agreed, hanging around our house, with walks and rides interspersed and some hedge-clipping and dusting, was quite pleasant so why rock the boat? And the piano did need dusting...

Around 3.30pm Jim and Charlie headed out for bike ride #2 with the hopeful goal of checking out a new park three towns over. I hopped in the white car and went to the local grocery store which is pricier but has good deals if you wait for them and college student-aged checkers who are very patient with my tendency to distraction and who occasionally tell me their woes at finding employment (as teachers, not clerks). I went home and carried in a ridiculous amount of boxes of packaged drink items under a blue sky.

I sat down at my desk to write and in about a minute and a half a sheet of rain so dense you couldn't see through it and pebble-size hail pieces were falling from the sky.

Jm and Charlie appeared, soaked to the socks, after about 25 minutes of pedaling through the storm and amid Jersey drivers who showed characteristic mercilessness for those not in or on motorized vehicles, streams of water deluging all of God's creation be d'mn'd. Charlie and Jim had been just past the halfway point when the storm hit and Charlie, with nary a complaint, rode steadfastly the whole way.

(Yes, Charlie has shown me how Roman centurions could march around in sandals and on a diet of frumentum --gruel, basically -- and under the Mediterranean summer sun and north to slaughter the Gauls (and to be slaughered....) and carry a full kit of javelins and a sword and shield and helmet etc, and conquer most of the known world, back in the day.)

The sun came out (while the rain was still falling) and blue sky returned, but that was it for bike rides for Monday. Charlie and I did do two more walks and then, after checking the refrigerator a few more times, he went to bed and fell asleep using his iPad.

I ate the bagel for a late dinner. I'll get him a fresh one for Wednesday.

30 Mile Sunday

16 miles on the Jersey horse country (as in dressage and such) bike trail!.

Plus 3 walks (of about a mile each) with our long tall drink of Charlie (so to speak).

Yes, good thing we all enjoy exercise.

 

 

A Historical Consciousness

High on Jim's and my lists of autism myths to debunk is the one about an autistic individual being, for instance, a toddler's mind in a teenager's body.

We most definitively have a teenager in body and mind.

(I know, can you believe the above Charlie Long Legs was once a babe inside five-foot-'tall' me?)

Perhaps because it is summer, Charlie has been on a bit of a nostalgia kick. He has been calling for the six mile local bike ride that goes west that he and Jim did a lot in previous summers. It takes them down a certain favorite street where a far younger (and shorter) Charlie learned to get the hang of riding on hills, on bikes that were not yet the same size as Jim's. There is also a school with a playground that Charlie has often requested to stop in, to go for a swing.

They did three of those rides Saturday, morning afternoon and night, with only a single walk in the morning.

In the middle of the day, Charlie was definitely on edge. He sat some in his brown chair waiting for his second bike ride and then, as Jim was getting ready, ran with a holler out the door, me on his heels calling for Jim. Charlie only went as far as our front lawn beside the white car but he was in distress and his legs were shaking as they had on Friday after he ran down the Jersey horse country bike path, also hollering.

Jim's feeling is getting Charlie in motion is the best thing so he set about getting an agitated, weepy boy onto the bikes and off they went.

Frankly I still have another ABA relic idea in my head of making sure Charlie is totally calm (over a 'behavior') before starting up on something new and a 'preferred activity.' But Jim has an understanding off 'bike therapy' based on his own experiences, memories of being teenage boy of much feeling and only so many resources.

It was Jim indeed who made the observation about Charlie's rising nostalgia and it being summertime .

At which I said, no surprise, Charlie is a historian too.

Stormy Portents

Around 9pm Charlie eyed me with the expectant look that says 'you being Mom you can read my mind.'

I wondered if I should start up the guessing game. You know, 'this or this.'

We had done our characteristic post-dinner walk. Of course, we had also (after Charlie woke at 9am) done our characteristic pre-breakfast walk and Jim and Charlie had clocked in 16 miles on the Jersey horse country bike trail after a tense start in which Charlie had gotten out of the white car, looked around, and run pell-mell down the bike path screaming.

Jim ran after him while I closed the car doors, made sure I had car keys wallet and cell phone and ran after them. Charlie had stopped and Jim held his hand and wordlessly we got down the bikes and got out the equipment: Must get Charlie in motion.

After some initial screams, Charlie and Jim -- even with some raindrops -- had a great ride.

Two more were to follow at home, though both had to be cut short due to portents of thunder.

The rain is definitely very welcome; it is part of a cold front ending the summer's first heat wave. Any change in the barometric always is felt deeply by Charlie, not that he knows why he feels storminess coming on.

Friday evening he did know he was worn from the day. After first saying 'walk,' Charlie said 'no socks' as I got up and then 'bedtime.'

It was the right call after a full day, a good day.

Sneaky Mom

Little gets past Charlie.

When we used to give him all manner of supplements in the early days of trying out this and that 'treatment,' I never got too far mixing the contents of capsules into applesauce or peanut butter. Charlie has never liked applesauce or peanut butter and finding weird grainy bits of stuff in either meant he was absolutely turned off. Eventually we taught him to swallow pills via an ABA program and this simplified things dramatically.

Thursday afternoon I nonetheless engaged in a rare act of subterfuge. Charlie had dozed off in the brown chair with the giant timer on his iPad ticking off the seconds. Knowing the timer would sound at the halfway point, I tiptoed over and put it on pause.

He had woken at 7am, a perfectly normal time for a weekday. As he is on vacation, he and I started the day with a walk and then he and Jim went on a shorter (6 mile) bike ride and that, and a quick pediatrician visit because the infection on his left cheek came back and Jim and I wanted to address it immediately before, as happened a few months ago, it spread to his whole cheek and misery was evinced via behavior-- all of this plus the fact that it was 98 degrees fahrenheit, the hottest day of the year so far, must have drained Charlie.

He really was raring to go on bike ride number 2 at 1pm but it was broiling outside. So putting the timer on pause was, I realized, a little stratagem to help Charlie pass the hottest part of the hottest day in our air-cooled house rather than outside.

After he woke, we proceeded, as promised, to Jersey City. The everything of vacation, heat, the doctor, the cheek, the traffic on the Garden State Parkway, the antibiotic to fight the cheek infection, the hot tan of the concrete of a two-lane bridge with no shoulder: It was too much and Charlie moaned, then cried, then screamed and I looked down at the Hackensack River.

Jim drove and, when we had descended the other side of the bridge and were advancing to the exit for Liberty State Park, I cheerily said a little refrain that Charlie has been liking since around the time of my recent California trip.

'Gong Gong loves you, PoPo loves you, Mommy loves you, Daddy loves you, we all love Charlie.'

Charlie repeated the words (saying /f/ for the /v/ in 'love') and Jim drove over the cobblestones to Liberty State Park and we noted it was 100 degrees and we got the bikes off the car.

They biked in the harbor past the Statue of Liberty in a hot breeze. But the air was moving.

Yes, this is all the unadorned truth of our Thursday.

 

The Boy of Summer

On the first day of summer 2012, Charlie was up before 5am.

How else to fit in 3 walks and 2 bike rides for a total of 30 miles -- on the bike path in Jersey horse country and on his and Jim's original long local route taking them through five towns?

And in toasty 98 degree weather that is sticking around until the weekend.

We were able to persuade Charlie to take off his sweatshirt for the afternoon walk and the miles of bike riding but in the evening, understood his need for it even on the hottest day yet of the year.

Charlie ended his first day of vacation listening to certain songs on his iPad and pacing around with great intensity. Jim was reading on the big black couch in the living room and I was in the kitchen seemingly absorbed in scrubbing the stove -- but our attention, regardless of whatever is happening, goes first to him. After quite a bit of pounding walking and running, Charllie turned on a mellower Kinks song ('Taxman'), let go of the frenetic motion and announced he was going to bed, and did.