on the road with our son Charlie in Autismland
Charlie really likes his new bike route. 14 miles, through 5 or 6 towns, over an old iron bridge and past some industrial areas. He asked for the new route soon as he came off the bus.
As we have learned, serious good exercise sometimes just instills such exuberance in our boy that he is not tired at all. Indeed, at past midnight, Charlie is quite awake so that 8am Latin class could be 'interesting' tomorrow (though I could teach Latin right now if I had to; I've done it so much).
Sunday is always an anticipatory day for Charlie as he readies himself for Monday and the return to school. Charlie being Charlie, the anticipating starts about 18 hours before the actual event, i.e., 7.30am Monday when the bus arrives. He calls for his meals early (dinner becomes more like mid-afternoon snack), as if doing so will speed up the day and pouf, it will already be time to get onto that bus.
He slept in a little (past 8am) Sunday morning. Keeping in mind his weepiness in the car Saturday morning, we decided to 'stay local,' at home.
Charlie didn't object. There was a morning bike ride, fast and strong, though he was edgy on returning home and until after lunch. He spent a good hour wandering around the house, standing, staring and making curious (and distinctively Charlie) noises.
By the latter part of the afternoon and after a run-walk, Charlie was far more at ease and ready for a long bike ride of 11 miles on a course he and Jim had not done since the fall, on a bike path that starts in our town and takes them past a golf course in another town and, somehow (I guess they went quite off the path), beside the exit for the Garden State Parkway two towns over. Charlie wanted to keep going but Jim was not sure of the streets (and didn't want to call me should they end up in some unknown place and good thing because my Jersey driving skills are far better than they were when I came out here to college 25 some years ago but hardly at any sort of masterful level). So they came home.
After some dinner and a walk (that was more of a walk), Charlie headed up to his room. He asked me to help him type in the YouTube search box for some Teletubbies videos.
Then, until just before he went to sleep, the sounds of Jimi Hendrix (including a bit of an album I just added to Charlie's iPad, Axis Bold As Love) could be heard. Indeed, when I glanced in Charlie's room, he was stretched out with the iPad to his ear and Electric Ladyland blasting away.
How he is growing and growing up!
Charlie had Monday off from school and asked to go ride bikes in New Jersey horse country which was looking particularly glorious under full sunlight, a clear blue sky and unusually warm temperatures in the low 80s.
He had indeed come down with something; we now definitely connect Charlie's manic, feverish desire for intense exercise right before he got sick as a sign that he was feeling something coming on. It would also explain his up and down days last week.
Nodding and dozing in the back seat, Charlie missed seeing many gorgeous horses, farms decked out with pumpkins and promising corn mazes and colorful shows of leaves.
But you can be sure, once we pulled up to the bike trail, Charlie was ready to go and he and Jim had a pleasant, easy-going 11 mile ride.
Then Charlie went home and slept for a couple of hours, to wake refreshed and ready for walks and one more ride, in the cooler, crisper air.
On a rainy day, the clouds did part so Jim and Charlie had a bike ride at Liberty State Park, site of many a previous fine bike ride. After the ride, Jim and Charlie did something new, a little walk in some other parts of Jersey City, with someone who's part of a local group to preserve some older structures (specifically, a train embankment). We thought Charlie would prefer just to stay in the car but he called for a walk. I wasn't able to go as someone had to stay and keep an eye on the bikes and Charlie did call several times for the white car but he and Jim got a bit of a look around.
On the way home, Charlie started crying: Sometimes when you hold it all together and do a good new thing, the stress expresses itself afterwards.
Charlie continues to listen to a fair variety of music, moving from the Replacements to the Kinks and Barney with a tap of a finger. Teenagerhood is a time of jumping-around emotions; of one moment wanting to seek out the new and the next just wanting to hurry back to the familiar shelter of the faithful white car.
All of Friday was centered on Charlie's neurologist visit, which meant the whole day really came down to a 15 minute conversation in south Jersey. Aside from the altercation with the shiny tan car, Charlie has been navigating bus rides, school with his now-not-new teacher and aides, a 3:1 teacher:student ratio, and even his thymic distress without fireworks. The doctor noted that it seems Charlie's current medication regimen (he takes four different ones daily and a fifth for PRN emergencies) seems to be working, though noting that one of the meds could be contributing the the thymic distress. Charlie has been much more amenable to our efforts to get him to drink lots of fluids throughout the day and eating fiber-richer foods (apples and grapes; I'm going to attempt vegetable reintroduction too).
Of course there was a lot more to Friday than those 15 minutes. Mine started with a 6.53 am train (after giving Charlie his morning meds and finding Jim's cell phone so I could call him to make sure he was up to get Charlie on the 7.30am bus); three classes and a great deal of chalk dust (due to water damage on the roofs of some buildings at my college, we have had to vacate our usual classrooms where there are dry erase boards which I personally prefer because I write on the board lots in 5 different colors -- bringing Latin and ancient Greek grammar to life requires efforts somewhat on a par with coaxing a littler Charlie to learn his receptive language targets); last-minute instructions to an advanced Latin student for a quiz with an eye on the clock so I could make it to the Journal Square PATH station; rushing to said station in pouring rain because I brought my fold-up umbrella Thursday but not Friday when it actually rained; saying to myself that the brown thing running at my bag couldn't be a mouse only to hear someone else waiting for the PATH yell "there's a mouse running at your foot!" and making an appropriate screech (plus I was wearing sandals); waiting with other soggy, bag-laden passengers for a late NJ Transit train; waiting for Jim who had picked up Charlie only to be caught in traffic.
Then "caught" in traffic is pretty much how we spent the next several hours. Cars lined the NJ Turnpike on the way down (so we were almost an hour late) and lines of cars clogged all the local routes Jim tried on the way home, on hearing that the NJ Turnpike had 90 minute or some such delays. We passed by both where I went to college (road completely at a standstill) and where Jim had (roads moving a little better but but this time Charlie was saying 'I need to use the bathroom' -- which is remarkable as he never used to tell us verbally so we usually found out post factum when the fait, c'est accompli -- and it was also remarkably hard to find a place to run in due to New Jersey's jug handles and continued streams of cars every which way).
Apologies for getting into private matters but parents of kids like Charlie know that bathroom business can rule your life. But not only can Charlie now tell us, in words, when the moment approacheth, but, at long last, he can wait and it holdeth. It was just a few years ago that I was still keeping extra clothes in my bag and the car.
Charlie also sat through all but the last few minutes of our visit with the neurologist. We have gotten in the habit of only having him sit through the very start of the visit and then going to the car: Neurologists' visits inevitably mean discussing behavior storms and the like and who wants to hear their worst moments discussed in front of them? Friday seemed at ease enough so that Jim, after letting Charlie know he was going to talk about 'what happened,' quickly explained the altercation with the shiny tan car.
Then he and Charlie headed to WaWa while I went over med refills and Charlie's stomach issues with the doctor.
Then we headed home, except we didn't get there till about 4 hours later due to massive amounts of cars on the Turnpike, on state and local highways. 'Still plenty of people living in New Jersey,' quoth Jim who had to summon every last bit of local Jersey road knowledge to keep us moving, if not necessarily closer to our destination.
We spent Saturday doing the usual including, of course, some bike riding on the trail in (traffic-less) Jersey horse country -- very good to stretch out our legs after the previous day's extended sit in our faithful white car.
Visits to the neurologist don't, of course, last 7 hours but we did spend that amount of time in neurologist-related travel on Friday and managed to drive through some five counties of New Jersey as Jim, relying on local knowledge, tried to shortcut us to a quicker return home. (In trafficless conditions, the drive takes not quite 90 minutes.)
The actual consultation with the neurologist was a good 15 minutes and Charlie sat through Jim relating the second incident of the tan car with any further incident.
After two bike rides, the first on our beloved NJ horse country bike trail and the second on "home turf," Charlie really wanted to got to Jersey City and get Vietnamese food, just as we had done the night before. We attempted to divert him to other locales, while all the time thinking about:
We all got in the white car and drove towards Jersey City.
Traffic was light and we zoomed along. Then, after we'd gone over the NJ Turnpike bridge, I saw it. Saw that the Tribute in Light -- the twin columns of light shooting into the sky from where the World Trade Center once stood -- were back, glowing blue up through a cloud, the red-white-and-blue lit Freedom Tower to their left.
I took photo after photo after photo from the Turnpike. The twin streams of light shown to our side as we drove to downtown Jersey City. The restaurant where Jim dropped me off to get Charlie some spring rolls and noodles is almost directly across from where the towers were and the lights could be seen just down Newark Avenue.
Jim drove slowly home and we all stared back at those ghostly, beautiful beams, rising high into the heavens, as long as we could.
En route to getting Charlie some Vietnamese spring rolls on Friday night, I took this photo of the under-construction Freedom Tower from Grand Street in Jersey City and we thought of that day almost ten years ago and everything that has happened since.
It occurred to both Jim and me yesterday that Charlie has been about the same height -- a few inches shorter than Jim -- for a bit, after a long period of seemingly growing at a regular and rapid pace. Maybe Charlie is on track to have height commensurate with Jim rather than Yao Ming.
While of course we'd like for Charlie to grow as tall as genes + nutrition allow. On the other hand, the prospect of him not being mega-tall is potentially a relief. Charlie's knees bump up against the front seats of the white car and he has literally no room to stretch out in the back. He doesn't seem to mind (most of the time) but then, he's not inclined to imagine what it would be like to be in a more spacious vehicle. The old black car that spends most of its days parked in front of our house -- it runs quite well but, lacking four-wheel drive, it's not safe to drive in winter snow and ice -- is due to be replaced and Jim and I have been considering roomier options, better suited to our boy (if not to his mother who, being not quite 5 feet tall, would prefer something like a VW bug -- but don't even think of Charlie riding in that).
We do spend a hefty percentage of time in our car. Rides don't have quite the soothing effect they did on Charlie when he was a baby and toddler; he's always alert now, looking out the window, sometimes saying 'this way, that way'; I wonder often what's going through his head as we pass certain places.Sometimes car rides are over-stimulating. Occasionally Charlie insists on going to places that feel a bit like the stations of the cross for us, as they're sites where he's had some spectacular tough moments.
To some degree, Charlie calls for rides because he wants to 'make the neighborhood rounds' and see that all is as it should be. Plus, it's accurate to say that Jim likes driving; being a New York taxi driver (back in the 1970s) was something of a natural job for him.
Jim also has a deep affinity for driving around New Jersey and hence doesn't mind driving several miles out to New Jersey horse country several times a week of late. A friend introduced us to the trail a few years ago but I am quite sure she and her family aren't as regular visitors as we've become: We went out Sunday morning for the third straight day in a row.
Continue reading "Summer Training With Our Own Personal Trainer" »
Yesterday morning we went to look at the camp Charlie will be attending next week. Charlie was true to form, calling loudly for 'camp' on the way up and then, once at the camp -- which is in a nice tree-shaded area -- calling for 'white' (car). Always one step ahead of where he is, is our boy.
We're not at all sure how Charlie will do at camp next week. It's a day camp and his first time ever. Charlie's teacher made him a picture schedule for him to use at camp, so he can note what activities they're doing (and how much longer he has till he goes home). The camp has a lowkey atmosphere and there's a nice looking pool that's about lap pool size. Charlie starts Monday and, while the camp set-up seems the right sort of thing for him, the newness and unfamiliarity of it all will be challenging. But it's definitely a friendly sort of place and, if Charlie lasts the whole week, there will really be only two weeks with him home before school starts the day after Labor Day.
Charlie asked to stop at the little local amusement park on the way home around noon, far earlier than we usually go. The park was crawling with kids, most of whom were there with some sort of camp program. Jim and I rather enjoyed the busier atmosphere but two rides were enough for Charlie.
He'd started the day calling for an 8am bike ride and he and Jim did two more in the early evening and evening proper. Inbetween, lots of iPad-ing including some good quiet time with all three of us in our living room.
With still fresh memories of the past two years' really intense "Camp Charlie" days when Charlie needed non-stop exercise and activities for all the weeks he was off from school, we could use a couple more such days that are quiet, and lowkey, until September 6 rolls around.
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