We Go With Him

Solo

In the summer of 2001, we were walking on the beach when we met a man and a boy boogie-boarding in the waves. Charlie was four years old and absolutely fascinated by the ocean, which he clamored to be brought to in our arms or (preferably) on Jim's back. If not in the water, Charlie would stand on the wet sand enthralled by the waves going back and forth, back and forth; sometimes he'd run in and out of them and, too, from side to side. 

Each time we were at the beach, Jim would drag out the boogie board and (sometimes with me holding it) get Charlie to lie on it. After a bit of wave action and, sometimes, or rather most of the time, Charlie flopping off the board (he'd just lie flat on it; we had to place his hands on the edges to hold on, and then his hands would slip off due to the board being, of course, wet), Jim would pitch the board to me and I'd haul it in, while he and Charlie ventured a little farther out into the waves. 

The boy we saw boogie-boarding was wearing a rashguard and a big smile as (with his board properly fastened by its strap round his wrist) he rode a wave in; as he got up from the sand and, still smiling big, ran back to catch another wave.

It was early evening, the lifeguards long gone (they stay till 5pm) and the air cool. Jim and I asked how old the boy in the water was. "Six," replied his father. He was wearing a shiny black rashguard and must---as evidenced by his slicked-down hair and mustache---have just been swimming himself. He and Jim kept talking, and we learned that the man was a New York City firefighter. 

"It all starts at five," he assured us. And smiled warmly towards Charlie. 

We returned to watching his son---I think his name was Kevin---riding another wave in.

Sunday Jim and I stood on the sand and watched Charlie riding a couple of waves in.

We were at the same place on the Jersey shore where we'd met the fireman and his son, though not at the exact same part of the beach. It was late morning as Charlie, after a 6.30am walk, had put on his swimsuit, loaded his boogie board into the white car's trunk, and asked to go to the ocean. 

Charlie refuses (quite logically) to wear anything but his swimsuit to swim and was only in the 50 degree water for several minutes. During that time, he jumped onto his board, swung with a wave for a moment, and started kicking. He went out and out and Jim called his name and I made the 'rein in it' gesture with my left hand; Charlie swum back around and got his first ride. He turned right back around towards the ocean (Jim could tell he was able to stand in the water) and got back on his board and a wave brought him in.

Repeat, repeat. Repeat.

Charlie got dunked under by the swirling waves on the last ride and ran out, asked Jim to unfasten the wrist strap, and ran back into the ocean. Aside from a girl around his age who scurried in and out at the very edge of the waves a-shiver, Charlie was the only swimmer.

Charlie was the sole swimmer, and he was swimming, and boogie-boarding, solo.  Jim and I were two parents watching their son swimming in the ocean.

You can see for yourself.

 

Waterfront Views

Saturday wasn't a day of rest but we did remain pretty much around our house, walking morning (6.30am), noonish, and night (/evening) with a mid-morning bike ride thrown in for good measure and some bouts of computer-using and car-sitting, once with a container of vanilla Soy Delicious 'soy cream' and both times with Charlie himself reminding me, 'Timer.'

(Once a parent starts translating a little Virgil or doing other writing work, or scrubbing stickiness off the kitchen cabinets, she can lose track of the time.)

After sit-in-car #2, we decided to go for a car ride. We started driving towards one of the streets that we've been walking every day on our walks, under a railroad trestle and ended up just missing a green arrow to make a left at a very major, and very congested (and hot due to so many cars and trucks idling) intersection. 

We couldn't figure where exactly to go. Charlie was probably hoping the beach but the plan was to do that Sunday (i.e. today)---and I said, what about Weehawken, where Jim had give a talk at the library last week.

First Jim thought we'd stop in Hoboken which we did after a stop at an Exxon 'Tiger Stop' where Jim observed that we no longer have to worry about losing Charlie as his head is visible above all the aisles of packaged products. (Not mine, as I demonstrated by ducking behind shelves of Doritos in various flavors, Lays's, and Funyuns.) Charlie selected a diet Mountain Dew which he actually doesn't like but persuading him not to take it was not worth it (i.e., it was a parental 'choose your battle' moment). He then found a red box of brownie mix just like the mix that got us into major-o trouble at a local grocery store a couple months ago. We said 'sure, fine' again as the likelihood of us returning to that Tiger Stop is low and the point of the whole excursion wasn't to battle about brownie boxes (or neon green diet sodas).

The point was to check out some Jersey sites.

I don't know why all those people are lined up to get into Carlos Bake Shop (maybe because it's the home of 'Cake Boss'?) in Hoboken but there was a limo parked in front behind that black car.

 

We nabbed a parking place a block away from the Hoboken waterfront. Here's Jim and Charlie walking in the shadow of the glamorous W hotel.

 
 (You can tell who're the real Beautiful People are in the photo, ob-viously.)

 

Jim wanted to check out progress on a playground that is being built on Pier C, once the site of various waterfront 'incidents.'

 

As you can see, some work remains to be done in regard to accessing the playground.

 

Charlie didn't want to walk around too much (we'd already walked quite a bit---understatement) so we got back in the white car. We drove north to Weehawken, which is up on the palisades, right across from midtown Manhattan, and up the river from Jersey City (whose smaller but rising skyline appears on the right.)

 
 

Other people were making the most of the view too.

  

(These were just two of the bridal parties we saw.)

 

And then it was home again, home again, via the NJ Turnpike and brownies we did bake. 

Much To Talk About: Date #2

 Charlie began the long weekend by getting up at 5.30am and going (with the usual parental partnering) on a long walk. On returning, he headed straight for the backseat of the white car, having secured a jien duy my parents had sent in a box that had arrived on Thursday. 

(Not that you're wondering, but deep-fried rice flour puffs stuffed with red bean paste and encrusted in sesame seeds survive 2 day priority mail transit, especially when wrapped in layers of saran and sealed in a Ziploc.) 

We were on the road the school by 8am, which means the driver (moi) didn't have to (as is the case 88%+ of the time, speaking purely anecdotally) proceed at a rather robust tempo. This also meant that we had to wait to hear the Bird Flight show with Phil Schaap. I know, I've mentioned him yet again---but Charlie does sit up straight and perkier and his face breaks out into gleeful lines when he hears Phil's voice. As Bird Flight doesn't start till 8.20am we listened to the program before it, Daybreak Express, which is usually all very well but Friday morning the music (mostly a cornet) was not (to us) of a familarly soothing sort. After we'd listened for five minutes, I saw Charlie's brown eyes looking bigger and his head bobbing as he forehead furrowed, as he were trying to follow the line, or lines, of the music and couldn't quite, at least after an early wake-up. 

There was little traffic and the ride was smooth, and Charlie dozed in and out. I was worried that he might be difficult to rouse to get out of the car but he exited as soon as an aide (who is not in his classroom; he's now ok with any of the aides taking him there) opened the door. I was worried, too, that Charlie might be tired and want to sleep during the schoolday and be out of sorts in general, but his teacher wrote that he'd had a fine day.

We did too---Jim and I went on Date #2.

This time, I met Jim at his office in New York, at Fordham University's Lincoln Center campus.

Then we walked down by the Hudson.

 

We sat on a bench and talked.

We had an early lunch at a Greek restaurant (my pick), where we talked more.

 

(I could have ordered a refill of my Greek coffee, indeed.)

 

I went back via the D train and the PATH and had time to stop at home, and then pick up Charlie.

This date thing looks like it's going to be a Friday fixture, at least through the summer and when Charlie's in school and Extended School Year. I'll be teaching on Friday come the fall, but there are plenty of other weekdays in the week. 

It's not that Jim and I don't talk plenty in general. But we try hard to avoid going on and on about upsetting and unpleasant topics in front of Charlie rather as I think parents generally do. Prior to the past year or two, I think we didn't filter the content and tone of our exchanges in front of Charlie. A spirited conversation about New Jersey politics or, I don't know, some book or other, can have nothing (directly) to do with Charlie  and still set him on edge. Charlie can sense excitement and passion and strong feelings whether expressed verbally or non-verbally; hence we've found it well to email or text each other at times. Maybe that sounds a bit extreme, but it's worth it at this point in our household to keep the peaceful-easy.

All the more reason why it's essential to keep up the dates.

And the talk.

Meaningful

'Yes Blake yes Lou yes Tara yes...... '

Charlie has been saying this phrase over and over, of late. He often punctuates his statement (said spontaneously by him) by stopping short if he's walking and, too, by holding his arms stiffly and, sometimes, pointing.

I don't quite know what it all means. I do think that Charlie is saying this phrase---all people from his past and present----because those people (or rather, beings---Lou is a dachsund) mean something to him. Meaning that, Charlie remembers them especially well, because (perhaps) we knew them at a particularly important, significant time of his life---namely, when we were living in St. Paul, Minnesota, where Charlie was diagnosed with autism and where he began first to learn and to communicate in a home ABA program.

I could be dead wrong and I'm ok if that's the case. It may be that Charlie just likes to say those names and the 'yes' over and over. Charlie really liked (I'd even venture to say 'loved') the therapists and general set-up of his first in-home ABA program: Maybe he's talking about people who he knew 'back then' as a way of referencing a part of his life when things were good, because things have been pretty good of late, school- and home-wise. A couple of months ago when he was still adjusting to his new school, Charlie kept saying 'hi Mr. Matt' and then 'Kathy Marilyn Flo': These were all the names of teachers and aides he'd had in the past and while he'd like them, those were classrooms in public school autism programs where things were more up and down.

Since the words that Charlie produces on his own often seem 'out of context' (it's very rare that Jim and I will be talking about the Twin Cities these days---we've many a fond memory from our two years there) and are mostly strings of nouns and words like 'yes' or 'no,' there's a tendency to see such phrases as 'non-contextual' (a term used by the teachers in the public school autism program he attended before his current school); as random and arbitrary; as meaningless. Jim and I being quite aware at this point of Charlie's major challenges with speech and communication, we've long known that we need to presume competence in Charlie and act as if he's saying something because it is meaningful to him, if we'd only try to see things from Charlie's perspective.

I've noted that Charlie, once a regular walker on the actual sidewalks of New York, has been showing a clear (and quite contented) preference for staying in the mundane old Jersey 'burbs. The long walk that we do takes us through two neighboring towns. While I'd say our own town has something of a 'pleasantville' ambience---lots of single-family homes with well-maintained front yards (not too big and not too little), kids walking or biking to school on their own, Italian grandmothers who are shorter than me standing at attention as traffic guards, the occasional front-yard lemonade stand (I kid you not)---some aspects of one neighboring town, while hardly any sort of urban jungle, are distinctly less, well, pleasant. 

For instance, our long walk takes us (as depicted in the photo above) over (no longer used) railroad tracks, lots o' weeds, a sprawling parking lot bordering the tracks and the weeds, a couple of trash dumpsters, long lines of cars because there's a major intersection on the other side of the parking lot (and people try to cut across it all the time), a rusty looking set of buildings that produces something involving 'sealant,' a row of self-store warehouses, some big-box chain stores; quite a bit of trash (i.e. trash that's not in the dumpsters). And as we walk past all this (or sometimes, rather, sprint---Charlie likes to take advantage of the wide open space of the parking lot), I constantly say to myself, I can't believe I'm walking here for the nth time. Walking, and having a [no sarcasm] grand old time.

What would generally be thought a walk in ugly environs, is rendered, yes, meaningful and even fun, by doing it with Charlie; indeed, by doing it regularly, and repetitively---twice yesterday, in a cool breeze with me in the afternoon and post-rainy-bike-ride with Jim and in matching sweatshirts.

Just as, what might be thought an obsessively, excessively, repeated phrase becomes a trademark expression of something very Charlie, replete with meaning.

And it's a meaningful adventure we journey through with Charlie. Believe you me!@

A Good News Post (or, we sure live near a lot of grocery stores)

 Today's post brings good news.

!!!!!

Although, Wednesday didn't start in such an exuberant YAY! fashion.

Having written about what a great job Charlie was doing not over-stuffing the backseat of the white car with stuff what did I see when, at 7.30am on Wednesday, I peered into the backseat but five blankets, all balled up into little colored rounds and shoved on the floor behind the driver's seat. 

Both Jim and I (separately) attempted to dissuade Charlie of bringing all those blankets. The answer was a resounding and loud 

'NO'

further accentuated by the slamming of the left-side backseat door.

There followed a parental debate about whether we should or shouldn't be more insistent about lessening the blanket load: Should we let be about the OCD? If we 'let be' was this the start of yet another new obsessive 'need for order' that would---like always driving certain 'that ways'---lead eventually to a big 'disaster mess' (as in, ER waiting room for hours sort of thing)? But it was so hot and humid and Charlie'd been extra hummy and not at ease for the past day plus, weren't these extenuating factors that should make bringing extra stuff into the car 'ok just this once'? But is there ever a 'just this once'......

(Just so you get a picture of the Really Intellectual Discussions we have around here.)

I had already set the timer for a half-hour. I added a piece of paper on which I wrote: '10 minutes then 2 blankets back in the house.' 

(Obviously, I was secretly scheming to yank 3 or even 4 blankets out but 2 seemed more reasonable and the air already felt so heavy.)

I put my coffee thermos and Charlie's blue bag into the car and opened the back door. 'No,' said Charlie.

Well, of course.

I picked up the piece of paper. 'But the schedule says 2 blankets have to go back in the house.'

'No,' said Charlie. "No. All done. ALL DONE."

'The schedule says......'

Charlie handed me a small  blue fleece blanket and (with what I'll describe as 'an overly exasperated sigh') shut the door and I went into the house with the blanket waving the blanket at Jim: One is better than none.

Anyways, as far as the 'good news' (yes, that was all just a proempticon to the actual 'meat' of this post).

Several hours later when I picked Charlie up after school, we made a mildly revolutionary left turn out of the parking lot of the Big Autism Center rather than a right turn. Charlie has been directing us to make the latter for some months. A left turn means a shorter ride home and so is (from the driver's perspective, at any rate) preferable. I was certainly glad for a change and Charlie didn't seem to mind.

And then, a couple hours later, after a very warm walk (it was in the low 90 degrees, Fahrenheit), Charlie and I had an impromptu, and very pleasant, time at one of our local grocery stores. 

I have to say 'one of' because we live within a 10-minute radius of a few: two branches of the one with good prices and the widest variety of groceries including sushi, and which Charlie had a neurological storm at several months ago so we're not inclined to visit (plus the store no longer has the same nice elderly man making sushi; he was replaced by some conglomerate from the Midwest); a sparkling branch of a smaller, local chain that was the site of the incident of the red brownie box (i.e., forget going into this store for awhile); a very popular branch of a national chain that, among other things, sells exceedingly cheap bottles of wine but tends always to be crowded and has a relatively small-sized space, so it's not an ideal spot for Charlie (though he does like the rather mass-produced looking sushi); a branch of another large chain that doesn't have quite the 'panache' about its name that the other stores in this too-long list do.

We ended up at the last store because Charlie doesn't have much of a history there as it does not sell sushi and hence has been of little interest to Charlie, at least until recently.

Charlie told me 'basket' and got a shopping basket and, on seeing a display of on-sale Saltines, 'crackers' and got a box. He checked out the watermelon but didn't get any which was very well because yours truly had, earlier on Wednesday, lugged in a bowling-ball sized one that probably cost less than the cups of cut-up melon on display. He asked for 'relish' and I wandered ahead to find it in aisle 17 only to see Charlie tarrying around a case of bargain DVDs. A tall woman walked by, and paused and said something to a man (he came up to about her shoulder and was wearing a big t-shirt and shiny, loose shorts) who was slowly pushing a cart. He didn't say anything and kept walking slowly in a straight line, with the cart.

Charlie helped himself to a jar of (the only brand of) relish (that he'll eat) and then a bottle of ketchup (after checking that it was ok with me). We ambled into the frozen section. 'Fries' said Charlie and, before I knew it, he'd walked right in front of a man (who was a couple inches shorter than him) in a baseball cap, to open a freezer case and retrieve said item. The man laughed and, catching my eye, indicated 'no problem.'

I found the aisle with boxes of Capri Suns (the one thing that we actually really needed) and carried two boxes to the check-out counter. The clerk emptied the basket while Charlie went to get a soda. She held up a primary colored DVD (with photos of four guys, each wearing a different colored long-sleeve shirt) and my surprise at seeing it must have registered on my face because she said, 'You want this?"

'Sure, yes,' I said, running my ATM card through the machine. 'We already have a couple of copies of it.'

She scanned the Sierra Mist Charlie had gotten and laughed. I did, too.

I carried the bag with the two Capri Sun boxes back to the car and Charlie took everything else, along with his green drink and back into the muggy night, to the sound of Phil.

(He was doing a special live broadcast Wednesday evening---he had come back on the air Wednesday morning and, while Charlie grinned and rocked up and down, explained that he'd been ill the past two days.)

(Obviously, his return was the best news of our good news day.)

Quite Accommodating

The new little routine here for the past few days has been:

Charlie has woken himself up between 7 and 7.30am, just enough time to wake up fully, get himself dressed (even showered!) and into the car. (In point of fact, yesterday he waited for us slowpoke parents to get ourselves and our things together.) Either Jim or me or sometimes (as was the case Tuesday) both of us drop him off at school. I usually pick him up. 

And, for the past couple of days, after a (largish) after-school snack and a little computer time, Charlie's been heading up the stairs for a late-afternoon snooze from which I've been waking him after an hour, courtesy of the timer (we again have an iPod touch (refurbished......), thanks to my generous relatives) and the radio (streamed via the computer which seems on the verge of becoming the all-encompassing multimedia/entertainment/communication device around here). (Good thing we have more than one; broken TV resides in the basement.) 

Monday Charlie must have been really worn out as he could barely get up by 7pm; Tuesday, he was awake by a quarter after 6pm. Both days--after riding his bike and doing his habitual walking tour of the neighborhood---he wanted to go to bed by 11pm and stayed in his room, even though it took him (on Monday) over an hour to fall asleep. Tuesday, the three of us enjoyed a night walk after which Charlie helped himself to a late supper/'snack' of noodles, and was careful to configure the dishes, saran wrap, and other items on the kitchen counter with his inimitable sense of order. (My no--spill coffee thermos---glowering over some lunch containers and before the birthday card my sister made for Charlie---is actually at the center of the arrangement.) 

What's notable to me lately is how flexible, how accommodating (who's accommodating whom, I sometimes wonder), Charlie has been to step outside of his 'this order must be maintained' mode and to do as requested, whether waiting in the car until we're all ready to go, or to going to his room and hanging out there even if he can't sleep (and sleeping eventually), or not taking too much stuff in the car.

Charlie has always liked to bring a few of his own treasures---his worry beads, the garage door opener to his grandparents' house (it doesn't work anymore and there are other openers)---and to leave them in the back seat. In the past, he has wanted to bring so many things with him---a couple of blankets, in particular---that the back seat was in danger of being transformed into an alternate living space. Too, the more Charlie took into the car, the more he had still to snatch up from his bedroom or the old blue couch and place in the back seat, and the more adamant he became about traveling with a steamer trunk's worth of stuff. So we have been limiting what he brings to the smaller items (yes, a couple strands of worry beads) and negotiating: One small blanket is ok but not three king-sized fleeced ones. 

Even though I was rushing around making coffee, putting the finishing touches on Charlie's lunch, and getting dressed, the negotiating on Tuesday morning went without incident, with Charlie dumping the bigger blankets on the living rom floor and (with a pleased grin that seemed to say got one past you, Mom) making haste to secrete the lone little blue blanket, all wadded up, into the car. 

I also got the sense that he was indeed pleased that he could take that one item but not the whole kit and kaboodle; that he was able to let go of fulfilling the 'stuff in the car' obsession.

Also, on the ride up, Charlie has started to look forward to hear Phil Schaap on WKCR, working his way through all the recordings of Charlie Parker on his Bird Flight show. It's even gotten to the point that somedays telling Charlie he'll get to hear Phil in the car has been enough to get Charlie out of bed, and that Charlie has been calling for 'Phil, Phil, Phil, Phil." Unfortunately, so far this week, Phil has been absent and while there's no denying how good Charlie Parker sounds, it's not the same hearing multiple takes of the same number without Phil's commentary. I rather think, too, that Charlie just likes to follow the rhythms of Phil's voice. 

Charlie has been ok with 'Phil-less' rides, though calling over and over for him, and doing a nice job on the initial /f/ and final /l/. (One way to practice articulation of difficult initial and final consonants, I guess.)

And I'm feeling like our strategy of not using CDs (= highly likely objects of self-stimulatory OCD fixation) and relying on the 'we can't control it' rhythms of the radio, is working out well.

(Though I have to admit, Charlie's not the only one missing Phil to start his day.)

Iconic

 So yesterday brought big news on the 'Vaccinegate' front, which you may read here on Care2.com and also here. 

Ok, next.

To begin again: Yesterday I visited Charlie at the  Big Autism Center. At the end of the visit, as I walked out with his teacher, she told me that they think he's 'just a sweetheart.'

[this is actually supposed to be a big blank space to indicate a very emotional response of the maternal sort on hearing such words]

The whole visit was great, because Charlie is doing very well at his school. He sat attentively at his desk while going over vocabulary words---street signs; telling time---with his teacher; he was focused and did as directed despite noise in the classroom and his being yawny after a full weekend; he sat straight up and stiff in music class. Of the four students (two were not there) in his class, Charlie was the only one who didn't volunteer to go up to the smartboard and touch it to make Jackson Pollock-ish drips and drabs by drawing a finger/pulling the mouse across the screen. On being called, he obligingly stood and put a finger on the white screen to make a couple of circles, somewhat concentric, and then asked to sit down---this to me wasall very Charlie, to be so careful and contained in his response, and dutiful.

It's some of the reason why his teacher called him a 'sweetheart,' an obvious heartmelt phrase for any parent to hear said by a teacher about her or his child, and all the more when the official paper record on that child---as documented in IEPs and incident reports---would give a different picture, to an outside observer.

Maybe that's one reason I've kept blogging, doggedly and day in and day out for five years come June 18th, to put out the real scoop---the true story---about Charlie and about what Jim's and my life raising a child with moderate to severe autism is like. Since starting to blog back in 2005, and, too, since we started to think that Charlie had 'something' over 11 years ago in the winter and spring of 1999, we've read so, so many accounts about 'life raising an autistic child' in the media, on websites and in newspaper and magazine articles; we've seen so many major broadcast networks' 'exclusive reports on autism.' All of these have seemed only to capture the thinnest slice of the fullness of life with Charlie,  scant traces of what Jim calls the 'veritable icon.' Books do a better job at portraying that fullness, though---as a book must begin and end---something of the story is, of necessity, left out. Which is maybe one reason I've had such a hard time getting myself to do more book-writing than blog-posting.

Anyways, to finish out this post's account of the school visit. Charlie's teacher showed the students of the New York Philharmonic kids' site, and used it to have them hear the sounds of different instruments and to try out a memory game. Charlie was again uninclined to volunteer to go up to the smart board but very (quietly) watchful of what was going on. At the end, his teacher turned on some salsa music and the four boys got up and danced. Charlie smiled during this part of the class and swayed side to side rhythmically and, some might say, a bit mechanically: I would say that his dancing style is, again 'very Charlie,' precise, contained and definitely distinctive.

Charlie said 'going home' several times during my visit and got upset after I left (and got over being upset quickly). I realized that a social story explaining my visit would have helped, and am planning on such with his teacher for next time. We also talked about planning for Charlie to start taking (or to start trying to take) the bus home from school in the summer and about to best prepare for such, and, too, for the several-day break between the end of school and the start of the summer session. And, she asked about starting up a shaving program, with an electric razor, to which I quickly said, 'Great' (just have to consult with Jim).  'Just let us know how we can help,' Charlie's teacher said, a couple times over.

It was some four years ago, when Charlie was (briefly) in a private autism school, that his teachers called him 'lovely boy.' The sentiment has stayed with him, despite a lot of rough and tough times; it could even be called a kind of iconic phrase to describe our boy.

Our lovely boy, indeed.

Camelot

 At Charlie's spring concert last Wednesday, one of the classes of high school students sang the first verse from 'Camelot,' the Lerner and Loewe musical that is sometimes (accurately or not) seen as a symbol of John F. Kennedy's presidency; of what might have been achieved. The first student who performed did most of the first verse:

A law was made a distant moon ago here: 

July and August cannot be too hot. 

And there's a legal limit to the snow here 

In Camelot. 

The winter is forbidden till December 

And exits March the second on the dot.

 By order, summer lingers through September 

In Camelot. 

Camelot! Camelot!

Hearing these words---about a 'congenial spot' that's perfect to live in, so perfect that hopes it might exist forever---I felt a heavy dose of wistfulness.

There were moments when Charlie was much younger when things would seem to have reached a certain level of stability, an even keel, a 'just right': When we'd found a school that he was happy in and that accommodated his needs. When he was having minimal behavior trouble there and at home. When we were able to do all kinds of things from eating in restaurants to walking around New York to flying to California on a non-stop flight.

(Well, to be honest, I never found any of those flights idyllic, but that was at least partially because airplane travel for 6 or 7 hours was tough for Charlie and for anyone in general.)

At those moments, I'd feel like I wished we could just bottle up the moment---that beautiful happy gold-bright on Charlie's face as he beheld the ocean waves, or showed off how well he could ride his bike to a documentary film crew---and keep things that way always. Of course, reality would arrive in the next few seconds and I'd then think, ok, so we can't keep things like this forever, but can't we retain some of it? 

A lot of these musings were tied up with the pang I felt in seeing Charlie getting older and bigger. 

Quite Sociable, If I Don't Say So Myself

Yet another shocker post today.

After a full Saturday of walking (x 2), bike riding (x 2), grading (Jim), hauling branches to the town recycling center (Jim), speed grocery shopping (me), we went to have dinner at a friends' house. We'd been to visit these friends back in November. We had predicted that Charlie would prefer to spend most of the visit in the outside environs of our friends' house rather than in the interior; in, that is, the car.

Surprise.

As we pulled up into our friends' driveway, Charlie asked to get out. He walked into the kitchen of their house and opened the refrigerator, and asked to have the main course, homemade sushi.

Charlie sat at the table and ate, first sushi and then---after waiting 5 minutes with the help of a timer and a written schedule---soy vanilla ice cream. He then asked for a walk and out he and Jim went (adding to the day's mileage by a few more). After returning, Charlie asked to use the computer (which was the same sort of laptop as we have), to see some videos and hear some music. He stood and watched while Jim and I talked to our friends. 

By just around 9pm Charlie requested to go to the white car. Jim and I noted that this would be quite fine. I set the timer on my iPhone for 30 minutes; with 11 minutes and 27 seconds to go, we were in the car.

Somewhere on the Garden State Parkway, Charlie said 'bedtime' and it was straight to bed that he (smiling as if pleased at himself) went to upon returning.

Seeing friends at their house (yesterday) and at ours (last Saturday for Charlie's birthday party) two weekends in a row: 

Sounds like the doings of a right social, and socializing, family, with a quite sociable boy.

 

Friday Date

The topic of this post is a potential real shocker:

Jim and I went on a date.

(Woo-hoo!)

Seriously. It's been quite awhile since we've done so. As Charlie has gotten older and especially as he's had an upsurge in 'challenging behaviors' in the past two years since he entered puberty at the age of (sigh) 11, it's been increasingly difficult, as in pretty nigh impossible, to have someone else watch him. We've been given names and talked to people and a college student friend of ours watched and 'hung out' with Charlie last summer (while  we were around). But after some really difficult (some would say catastrophic) experiences that involved going to the ER or 'first responders' well, responding, we've felt that it just wasn't the time to try a sitter. 

My parents have watched Charlie---even stayed overnight with him for a day or two---since he was a baby, but with him getting older and bigger and my parents getting (don't we all), um, more advanced in years (they're probably going to email me about saying that, a-hem), having them stay with Charlie 'on their own' has become more complicated. Jim and I have gone to a local (as in five minutes from our house) restaurant a few times while my parents watched Charlie, but the days when we had them pick Charlie up from school and watch him till we got back late a night from a date in New York are, for the time being, a memory.

The lack of a sitter situation is something to work on. Yes, we have thought of asking college students from where we work; most of Charlie's previous sitters were all college students, with a few in high school. Or of having someone around while my parents are watching Charlie, 'just in case.' Yes, it would be good for Charlie to have someone else watching him, walking with him. The past two years have been rife with said 'difficult behavior problems'---much more difficult than anything we all had to deal with when Charlie was much younger---and Jim and I have preferred to choose to be on 'the safe side.'

We've also put the principle of 'if the mountain won't come to Muhammad, Muhammad must go to the mountain' into practice.

As in, go on a date while Charlie's at a place where he's happy, his needs and communication are understood, and he's secure: school. And that's just what we did on Friday.

After we dropped Charlie off, we drove into Jersey City, parked the car at my college, and walked down JFK Boulevard to take the PATH train to Christopher Street. We walked over to Chelsea and Jim gave me a personal 'Irish waterfront' tour.

We passed the Port Authority building, whose first floor now houses a Banana Republic store. (Some sort of irony in there.)

 

We checked out the Romanesque architecture of Guardian Angels Church, built with the, um, support of one 'Mr. Big.'

 

We walked on some of the piers, including Pier 54 which is still being 'developed.' 

 

Jim and I both agree that, in its current unadorned state, Pier 54 would be most pleasing to Charlie. He's not a museum kid, but would appreciate the wide open space beside the Hudson River.

I think Charlie would also appreciate this park.

 

(Yes, I am working on getting the photo turned 90 degrees and upright.)

What's a date without a bite to eat---lunch at an oddly shaped table at (I think this was the restaurant's name) the Bus Stop Café in Greenwich Village?

  

We took the PATH back and were just in time to pick up Charlie. The rest of Friday unfolded with 'the usual'---a walk, a long bike ride---though it was certainly good to 'shake up the routine.'

Not that a certain someone wasn't on our minds as we walked around.

  

Yes, there is extra stress in raising a child with 'extra needs,' as a researcher, Brian Freeman of Kennedy Krieger's Center for Autism and Related Disorders noted in US News & World Report, in regard to a paper he presented at IMFAR 2010 dispelling the belief that there is a higher than average divorce rate among parents of autistic children as an 'urban myth.' And there are ways of alleviating that stress for parents by, yes, taking time for themselves to be together. A date at whatever time is great with me.

And yes, a certain song kept playing in my head all day long as we walked the sidewalks of New York.