We Go With Him

Too Much in the Sun

Global warming made it possible for Charlie and Jim to miss nary a day of bike riding this winter but I had a feeling the piper would have to be paid.

Memorial Day 2012 it was 92 degrees Fahrenheit in New Jersey and we decided to try a new bike path in a beautiful park with butterfly gardens and Tudoresque houses where the staff for the estate that is now the park once lived.

Actually, there were supposed to be 18 miles of bike paths in this place. It's not too far from where we live now and is actually extremely close to a sprawling central Jersey town that would not be of any significance to most people but is to us because, after we left St. Louis to move back to New Jersey so Charlie could attend school here in 2001, we lived in that town, once all fields and now all condo developments and sHopping plazas with every chain store none to Americankind.

The park bike path place has only recently been renovated into its current state; we used to drive by it everyday when you weren't allowed to drive through. Charlie, who had slept in till 9am, seemed game to go and relinquished his sweatshirt to the backseat of the white car. Hot sun and no trees and bird watchers and all, he and Jim got in about nine miles but, it was a new place for Charlie and it was very hot.

And as Jim put it, Charlie is not used to riding his bike with trams (loaded with flora and fauna admiring folk) driving towards him. And, lovely as the park was, it was perhaps a bit too orderly for a boy who is used to riding uphill, around pit bulls, and past Garden State Parkway on ramps.

Coupled with the fact that Monday was a Transition Day between a long weekend and back to school, Charlie was unsettled. He tried to be settled at home with his iPad and usual pacing and snacking on apples but he was in his hurry up please it's time mode in which he is driven to do all the thingS he usually does in a day in short order as if doing so will shorten the time till which he can reach his goal.

I.e., school bus.

After 45 minutes On a timer, he and Jim were out on the bikes for a long local ride. Jim texted me that Charlie cried the whole time except for when they were in the woods where it's shady. They had a water bottle but Charlie refused to drink from it and we both agreed (over texts) that, while Charlie has my darker, tan-able coloring, he is possibly more susceptible to sun and sunburn like his Very Blond Dad than we have reckoned.

In which case, we are reckoning very late but I do think I've figured out more about the mystery of Charlie going to banging pieces in the car too often on the way home from the beach, from bring too much in the sun.

After the crying, hot ride, Charlie downed some sushi and fruit and a lot of fluids and was better, then nervously wanted one last outing so, in the spirit of we just had to get him to Monday morning, we went to our local McDonald's which is very local (3 minutes away if not 2). He smiled in the drive through line and ate none of the food, wanted to type, wanted to walk, wanted to go up to bed, moaned as he fussed over arranging his items in his room and I turned the air conditioner way down, second floor bedrooms in our lovely 1920's house not cooling down as much as we might wish.

Charlie summoned me with a 'tickle mommy.' He was smiling and wanted a drink and crackers.

Of course, I provided both.

 

Ho Hum Holidays

 

Monday is a holiday here in the US, Memorial Day. In New Jersey, it is also the start of the summer 'go to the actual real Jersey Shore' season. Once, we would have been scheming how most quickly to get Charlie down a traffic-choked Garden State Parkway to his beloved beach to swim.

But after a few years of misadventures centering around the central fact that Charlie is become a super swimmer, better than his parents, and brooks no patience to be dragged back to the sand, and got behavior storm mad when unable to swim as he felt called to, we have called a moratorium on the beach. I don't think the three of us are minding it, either, Charlie having discovered his forte in biking at least a dozen miles a day; Jim loves these rides just as much.

We felt sad about ceasing beach visits last year. Charlie in the ocean, boogie boarding, is a sight of beauty. One day we will return, when we are all ready for a new phase.

For now, we ride bikes, we run, we walk (and we are quite fast). Too, Charlie, and therefore all of us, seem best off without holidays, diversions from the usual order of things and the peaceful-easy-feeling-ness we all more than appreciate.

The most eventful thing to happen on Friday was that the cars, whose motorists are not so well-disposed to riders on two-wheelers (in Portland we are not), were braking for a big box turtle making its way across the asphalt in New Jersey's urban suburbia. Charlie himself just biked around its hindquarters and then continued on his way, as he does every day.

 

Party Success!

I'm sure Charlie threw the books on Saturday night in full-out anxiety about his birthday party on Sunday. It was a reminder of why, for some years, we skipped birthday parties for him, period.

We try to keep everything low-pressure for Charlie, in recognition of the fact that just the idea of the party, let alone the realities of guests and a table loaded with food, can weigh on him. We invited a number of our friends, all of whom have been very aware over the years of Charlie's struggles and sensitivities and would understand when we ducked out of a conversation.. Having my parents around was a huge huge help -- they picked up a big order of Chinese noodles and dim sum and, with four adults, someone always had an ear out for Charlie

He wanted a walk on waking, followed by a 12-mile bike ride. Coming home to a pan of shrimp lo mein and a pan of shrimp chow fun was an obvious treat and, while in the past I would have said 'wait for the guests!,' a birthday boy should get to eat his birthday noodles when he's ready (and hungry).

Our good friend Hal endured non-moving NJ Turnpike traffic on a drive up from Philadelphia. Charlie came running down the stairs when he arrived and ran smiling around the house. Hal had to head back home early but did see Charlie off with Jim and a friend, Ed, on bike ride #2.

Our other friends appeared and we had a nice little crowd on our back deck which is generally underused, Charlie having always preferred the front yard. (I'm probably in the back yard the most these days as I routinely cross it a few times to get the bikes from the yellow shed.)

Charlie spent a little time in his room after the second ride but was wary of so many voices at once (especially if you consider that it's rare for anyone but the three of us to be in our house). He and I went on a walk in the early evening during which we ran into our next-door neighbor and I noted that we were taking 'taking a break from our party'; she laughed in understanding. Then I took a smiling Charlie to get a burrito.

I had been sure to place his lunchboxes in the refrigerator so he would know that, party and all, he had school the next day. Charlie picked up his iPad and paced the L of the kitchen, dining room and living room. At first he had on Disney, then the Kinks ('Shangri-La'), then he started walking more briskly and running in spurts and his face started to get more set (i.e., frozen), and then he turned on the Pogues and his running got more intense and I went to find Jim to confer.

Jim stopped in mid-conversation to say he and Charlie would go on a bike ride.

So they did a total of 36 miles on Sunday, biking their good-byes to our guests -- all of whom we are thanking profusely for helping to make Charlie's 15th birthday a memorable, pretty much peaceful-easy feeling, and very good-feelinged, celebration.

And yes, after 36 miles of bike riding and 2 1/2 of walking, Charlie was ready to climb into bed at 10pm, and soon asleep.

 

Scenes From a Very Good Birthday

From start to finish!

 

 

 

Thank you to everyone for the lovely birthday wishes!

 

Mother's Day Comes Once a Year / Motherhood Is Constant

 

I had just brought the two black bikes out to the driveway in preparation for a ride out to Jersey horse country where the bike trail is when a tan car stopped across the street. A woman, with hair past her waist and a long flowery skirt, stepped out. She was holding flowers and an envelope and she walked straight towards me and said, 'I want to give these to you.'

Perhaps I've become too wary and jaded after so many years of interfacing between strangers and Charlie (making curious noises / doing curious things / back-arching his way onto the sidewalk / etc.) -- and some years of teaching classes of street-smart, Jersey-and-NYC-raised students: I didn't say a deep 'thank you' immediately but something more like 'who are you?" only to learn that she is the neighbor whom Charlie and I often see, fleetingly, as we go down the sidewalk on our daily walks (runs). She works a lot in her garden and sometimes she and I had caught each other's eye and nodded and then I'd continued to hurry after Charlie.

Realizing all this in a flash, I thanked her profusely. And then some. She said words to the effect of, you're a great mother and since it's Mother's Day I want you to know that.

I asked her if she had any children and she said she doesn't, though her husband has two who are grown.

I said thank you again and that I couldn't thank her enough, and she went back to her car.

And I got the straps for the bike rack and fastened them to it and Charlie ran down from the porch and watched me, all attention.

 

On Vacation

 

Charlie still has 3 more days of Spring Break (though I kind of don't count the weekend as he is, of course, off then anyways) and so far it has been, well, sort of a second Spring Break for both Jim and me. We've both limited the time we went into our respective jobs to the days we teach (and have been doing extra-heavy amounts of email to make up for less time on campus). Charlie woke up Thursday and insisted on a walk after which I went for my habitual morning jog and, on returning, found him conked out in his brown chair (he had not slept until past 1 or 2am the night before). Jim was still sleeping too after his Wednesday of driving/teaching/biking.

There's been some very happy / simply fun moments on this break, like Wednesday night when Charlie was sitting in the brown chair smiling and playing with his iPad. He turned on an all-time favorite of Jim's and mine, the Pogues doing Thousands Are Sailing. And in Brendan Behan's footsteps / I danced up and down the street.... When I got back to my empty room / I suppose I must have cried.

Somehow Charlie got a bad rash on his left cheek, starting around Friday. We took him to the doctor on Tuesday and got some prescription ointment. It's impossible to tell Charlie not to scratch (doing so or trying to block his hands would only lead to him scratching more). It must have hurt a lot because Charlie scratched himself quite hard and the ointment seems to have dried out his skin. But he's wanted to keep biking (29 miles Thursday) and been tense at times, but that's all. The rash isn't spreading and hopefully the worst is past. Often with Charlie, things get  worse before they get better.

And really, he has been so good. Suffering through that rash, great at the doctor's, patiently waiting when told it's 'too soon' for the next bike ride.

Thursday, after waking in the brown chair, Charlie asked to go to Jersey horse country. The kids out there didn't have Spring Break and schoolbuses were out, plus garbage collectors and utility workers. There was regular daytime busyness; it all reinforced the feeling that, we were getting to do weekend things on weekdays.

Which is what a vacation should be all about.

4 Very Good Days

Despite the abrupt start to Charlie's 4-day weekend (due to me thinking it was only a 3-day weekend), this was Charlie's best-ever-yet long weekend.

Usually I have a feeling of dread about any time Charlie has a holiday off from school and his being sick only added to the worry. But despite him coughing some in the day and in spurts at night in his sleep, and despite both of us coughing in fits and manifesting other signs of sickness, Charlie was peaceful-easy even-keel throughout the entire four days, including on the long trip back up the Garden State Parkway from the beach on Sunday.

We did take pains to keep our end of the peaceful-easy. One thing we always have to be careful of is talking, and talking too much, about people and topics (politics) that Charlie does not know so much about, in the car. Too often we can get a bit carried away and Charlie, understandably, gets irked, especially if there is any sense of conflict or contention in what we are talking about. I'm not at all sure how much of the conversation's content he grasps; I have thought that Charlie perhaps thinks he might be the subject of the conflict or contention and up goes his anxiety.

Charlie himself elected to stay 'local' on Monday, asking for a neighborhood bike ride after waking at 9; wanting, really wanting, a burrito -- we were wary as we've gotten him one a lot over the past few days, but it has been a holiday -- and so we did get him one; then afterwards handing me the Greek archaeology textbook I had left on the old blue couch, curling up and napping while Jim graded papers and I did some writing. On waking around 4, Charlie was ready for a second bike ride. The day finished off unremarkably with our usual walk, iPad time, poking around in the refrigerator and cabinets and munching. Despite the nap, Charlie was asleep by 10pm.

A quiet triumph, this long weekend was.

 

Chocolate, Hearts & (Love) Poetry

 

All day at school, Charlie was bedeviled by the cough he's caught. At home he was peaceful, still wanting the usual bike ride (with a request to swing at a playground, too) and a walk that was one-third fast running (Jim came on this too and wore his yellow jacket for visibility). Then, while I was making up some special Valentine's Day lessons for my Latin and ancient Greek classes (Catullus! Sappho!), he ran up and down the stairs and through the kitchen-dining-living rooms a few times. At one point, he opened the refrigerator to make sure his lunch boxes were in there with juices and watermelon packed (they were).

Then he went to bed and I attempted to get back to the so-called 'Dark Age' and the 'Sub-Mycenean Age' and the Protogeometric and such good things but first, chocolate marshmallow hearts had to be prepped to send off with Charlie tomorrow morning on the bus (assuming he's not coughing a lot more).

 

---

On a Valentine's Day note:

Love and Autism

Autism Heart's Club

Loss and Love

An earlier post entitled Love and Autism

 

Still Here

 

I don't know exactly how many miles Charlie and Jim rode this year -- 4000-ish? it is less than in 2010 due (Jim surmises) to bad weather (lots of rain). Fittingly, their last ride of 2011 was a solid 15 miler on the muddy bike path in horse country, a good part of it uphill. Owing to 50ish F temperatures, there was no need for yellow jackets though they still wore their heavy gloves (which was probably easier on Charlie: once he's made the switch to lighter or heavier gloves, it's best just to stick with those until the seasons change).

Both Charlie and Jim were quite worn, in a good way, after that bike ride and there was more midday napping. This time, unlike on Friday night, Charlie -- after dinner and two very brisk walks -- was very ready for bed, and sleep. (Also possibly because, I'm not really sure what time he actually went to sleep on Friday night -- some time quite past 1am, and he was up before 8am.)

So hello to 2012, when Charlie will be 15 (!!/gulp). When Charlie may surpass Jim in height, or maybe not. When maybe I'll get myself to write something besides an awful lot of blog posts, or maybe not. (Clearly, I should just psych myself into thinking that writing a book means just writing a super long blog post, right?) When I'm not going to Greece. (Sadly.) When maybe we'll be able to go back to the beach and have an uneventful time, including the ride home on the Parkway, or not. When maybe we'll venture back into New York City with Charlie to see the High Line and what's going on at the site of the WTC -- not via public transportation with its myriad of noises and the possibility of delays on 'NJ Stranded' -- or maybe not. When Jim starts a new book. (Yes!) When Charlie does all sorts of wondrous and unexpected things.

Wishing you all the best of new years, together with those you love.

 

Doing Christmas Charlie's Way

Yellow jackets were still in order for the two bike rides of Christmas but it's actually been positively balmy here with temperatures in 40s F/8 C, especially as a year ago we had one of those candidates-for-snowstorms-of-the-century on December 26.

 

Charlie pedaled vigorously and enjoyed the rides, despite sniffles and a cough that, along with two fierce bouts of crying the day before, led us to conclude, he must have a cold and/or a sore throat. This supposition was reinforced  by Charlie (1) sleeping in past 11 am (after briefly getting up before 8am) on Sunday; (2) napping in the afternoon after bike ride #1; and (3) going to bed at 7pm and sleeping soundly.

Maybe, too, he really just needed to 'refresh his batteries' after the Stresses/Changes in Routine of the Holidays, not to mention a bit of weather on the wild side and just a lot of too much.

My mom and dad got dim sum and noodles for lunch and Charlie helped himself to most of the container of chicken chow fun (once known as 'brown noodles' -- almost all the major 2+ word items of Charlie's vocabulary have a color word in them).

Charlie didn't care for either of these foods pictured below, homemade cranberry bread and store-bought 'Phoenix claws' (= chicken feet) that, my dad assured us, were terrible and not because they're chicken feet. (But the noodles and other dim sum were very good.)

After sleeping off a good lunch and a second local bike ride during which many people called out 'Merry Christmas!', Charlie asked for one of his favorites, a burrito. We had had a feeling that he would ask for this and, too, that we would have to address the tricky issue of telling him the store was 'closed' --one of those potentially loaded words for Charlie.

Jim and I decided that the best thing to do was, rather than confuse Charlie further with lots of language and explanations -- when he hears that such-and-such a place is closed, he seems to have some cognitive dissonance in hearing the name of the place (meaning that we're going to go to it) along with the word 'closed' (meaning that we won't have access to it) -- we all got in the white car and drove to the burrito place.

In previous years, knowingly driving Charlie to a store or restaurant that we know would be closed would have been more than ill-advised. But in the past several months, Charlie has been handling seeing that the door of said place won't open and repeating 'closed' after us as we point to a 'closed' sign in the window. Harder for him is hearing us say, while still at home, that X is 'closed' or that we can't really go to 'Y' now -- better that he see it for himself.

The burrito place (and the entire plaza it was in) was indeed dark when we drove by, as was every Golden Arches we passed. Jim asked Charlie if he'd like to go to the one fast-food franchise we knew would be open on a major holiday (because we went to it last year). Charlie said 'yes' so off we went and, instead of a penny, we got this in change:

A 2 cent euro piece from a Garden State Parkway McDonalds -- you never know who passed by earlier.

Charlie didn't want to eat the two burgers and fries that we got him; I suspect the unusual circumstances of driving here and there to darkened stores and then heading up the Parkway played a part. He was glad to go back home, see Gong Gong and Po Po and dine on crackers and fruit for his Christmas dinner, and then head up to bed.

I made a neat pile of his presents by his shoes so Charlie would notice them when he's getting ready to go out for the next adventure.