We Go With Him

Passive Resistance, Of a Sort

There's fighting the power in overt ways and there's an approach, learned via Charlie, involving seeming passive resistance that is calculated to move things forward.

That may not make sense so here's an example. On a Saturday evening walk after biking 22 miles with a cold (Charlie is one to insist), he stopped to do about twenty minutes of breathy noises and curious gestures. In earlier days we would have 'redirected' him but we have learned, he has a reason for doing it. So we just stood with him. I got several mosquito bites (we all got a few but bugs especially like me) and then we went home and Charlie, who is also contending with post-camp per-school vacation at home with dad less days (and his anxiety is linked to anticipation) went to bed. He had been up since 3 am.

At 3am Sunday morning, I heard him cracking his knuckles then turn on ocean waves and he must have gone back to sleep.

Letting be is not a bad, is a powerful, strategy.

 

Fall Break, Whether You Want It Or Not

 

In a non-surprising development after the past week, Charlie does not have school on Friday. We were hopeful there would be. Although, after hearing Charlie say a steady 'no school' in response to our neighbor asking him sympathetically if school was still closed, I did wonder if maybe, rather than have to get him into back-to-school-transition mode only for one day, it might be better for him, and us, to go through the rest of an entire week off and start anew next Monday.

And as things turned out, this will indeed be the case. I'm back to teaching Friday so Jim will be home with Charlie all day.

Thursday started with a walk followed by a bike ride followed by lunch and a walk and then a five-hour-plus wait for Jim to return from New York. I alternated watching Charlie from the (open) front door and stepping out and sweeping leaves and the porch and, as 6pm approached, getting out the bikes. Charlie seems to like this 'alternate' approach in which I'm a presence but not an in-your-face one; in which I'm there but give him plenty of space, literally and otherwise.

When Charlie was little -- especially when he was doing intensive ABA -- I subscribed to the mantra that there ought to be no such thing as 'down time'; that we had to keep Charlie's mind stimulated at all times. We did not accommodate, though, for Charlie having his own ways of keeping his mind busy, by 'processing' and working through thoughts and experiences while standing still and staring ahead of him. No wonder he sometimes became incensed seemingly 'out of the blue': In some cases, we must have been breaking into his thoughts.

A better understanding of how Charlie needs to think through and work through experiences -- such as finding himself home for five unexpected days in a row -- and simply to be -- i.e., to spend those five days -- has some role in his getting through this 'enforced staycation.' Another is that, in the past several weeks, Charlie just seems to be showing a lot of maturity. He has been steeling himself to wait to go for a car ride and get something to eat, to go for a bike ride, to hang on till Jim or I return home from work. He doesn't really want to wait and often asks for whatever he wants ('Dad home') about a hundred-plus times, his worry peaking with each utterance. But, for the most part, he has been able to wait.

I can't say I always handle those moments of saying-something-100-plus-times right. Sometimes I repeat each utterance after Charlie. Sometimes that assuages him (it did Thursday night) and other times it only seems to make his anxiety-o-meter rise (Monday morning). Our imprecise strategy is to discern where Charlie is and let him know that whatever he's feeling is understandable, is valid, and then to communicate back some nonchalance, in order to let him know, things are all right and calm. While sometimes (not really this week) there is storminess, Charlie's anxiety (and repetitive speech) often peaks and crests and then dissipates as a result of he himself working it through, and us acknowledging that he has to.

Also, I used to think, when Charlie had a day off from school due to a snow day, we had to make sure he still got in his academics and learning. I was overlooking, though, that Charlie needs to summon a lot of thought and strength to help himself get through something unexpected; that just being in such an out-of-routine situation requires an extra effort on his own part.

Thanks to all this, we've been cohabiting with each other's differences reasonably peaceably and this surprise fall break has been good times not a chore, but some fine times together. Perhaps by communicating (mostly non-verbally) this to Charlie, he's felt much better about snow days in November too.

 

Hurricane Irene and Charlie

Hurricane Irene came and went, leaving a submerged car in the center of our town, a few blocks from our house.

A flooded-out car under the overpass that's even closer to our house.

A river runs through the middle of our town. There's some lovely houses built right on it on the 'fancier' north side. We live literally 'across the tracks' -- the north side houses are on the side of town with the better schools, 'tis said. But as Charlie was in special ed when we moved here in February 2003, it didn't matter which 'side' we lived on.

I would say, we chose to live on the right side, as this is what the north side looked like post-Irene passing through. (Yeh, 'dead end,' no kidding.)

 

Charlie slept through the furious wind and rain that came when the hurricane hit. On waking Sunday morning, he called to go out to New Jersey horse country and it took several minutes to absorb that we couldn't. He and Jim proceeded to go on a bike ride after I waded through several inches of water to the shed in the back yard where we keep the bikes.

They couldn't do their usual route due to several fallen trees, piles of debris and branches and flooding. Charlie was troubled by the change in the landscape and in his routine -- he always does look out the windows to check where we are as we drive, so seeing the post-hurricane wreckage must have shaken him. He wanted to get in the white car once back so off we went, only to find that just getting out of our town was a maze. We were very lucky not to have -- like thousands of other people -- lost our electricity. but other parts of our town had and the signals were out, so traffic moved slowly and roads everywhere were blocked by downed trees and flooding, as indicated by yellow police tape.

Charlie endured the stops and starts after some very tense moments. It was disorienting enough for Jim and me to find roads blocked and to have to make numerous turnarounds and back-ups. Charlie is often irked just when we have to make a u-turn or go back home to get something forgotten so the many abrupt halts and turns we had to made must have rattled him to the core.

Once back home, Charlie went straight to bed and slept for almost three hours. I'd say his system was so undone by seeing the post-Irene mess, not to mention so many familiar spots (McDonalds! the supermarket, gas stations, pharmacies) all closed and dark, that he just conked out.

Jim and are also thinking, the big behavior storm he had on Friday was directly related to Charlie feeling Irene a-coming. A hurricane that leads to New York's subway system being shut down and 370,000 people evacuated has got to have an earth-shattering effect on a sensitive-to-everything boy.

Despite that nap, and after a second bike ride (on which Jim scouted out more of which streets were cleared and which closed), Charlie still was sound asleep by 11pm, to the sound of ocean waves on his iPad.

Let's Make a Deal

Maybe that is the best way to describe my parenting strategy at the moment?

After not enough sleep on Tuesday night/morning, Charlie woke on his own around 7.30am. He had gone to sleep fully dressed, sweatshirt, green shirt, and all. I concluded that the best thing to do was compromise: Fine, wear the green shirt, but put on your swim suit (Charlie's class was scheduled to go swimming Wednesday morning). I only packed the gray pants, telling Charlie it would be best to leave the brown pants safe at home.

He was very somber as we drove to school but smiled as he climbed out of the car and walked into the Big Autism Center. He had an active day: Besides the swimming, his tried out Wii bowling and, from Charlie's teacher's report, he enjoyed it.

Not that you'll be surprised to know, but Charlie certainly enjoyed sitting down (as he asked) at the Mexican fastfood restaurant we constantly patronize and eating a burrito. Once finished, he asked for another one. 'Sure, we'll get something somewhere else,' I said and stood up. 

Charlie asked a couple more times, his face solemn. I said 'can you put your sweatshirt on' and he did and we exited without any ado. 

Glancing in the rear view mirror, I saw that Charlie looked relaxed and peaceful: He had once again been asking for more than he needed or wanted and was all right with not getting that whatever item. Knowing what happened in the past, I had the 'it's not "more" that he wants' radar on alert. And indeed, Charlie was fine going home. He went straight to bed around 7pm and slept until about half-past midnight.

Yes, he is awake as I type this: Look's like we might have to do some more Giant Timer action and strike yet another deal.

Why Not Try Reverse Psychology?

 A very good day at school.

Still figuring out what to do about the green shirt/brown pants combo issue and wondering if it might be good to try the 'reverse psychology' tactic whereby we drop, or appear to drop, all attention to the matter and just let go and let be and somehow, in a fuzzy and non-scientific and maybe a bit messy way, the whole issue gets resolved. After all, now that he knows 'something is up' about keeping the shirt, Charlie has been insisting on wearing it even more.

Not going to address the issue beyond that as.....I'm sick again, ha. (Jim has something too this round.) Already had some Chinese tea---teaching five classes in a row on Tuesday was as ever invigorating for me but it can be a bit of a marathon---and that is indeed another photo of Charlie from Sunday, walking through the campus of Saint Peter's College to the gym to see the basketball game and just well, just doing good.

Hopperesque

I figured you've probably seen enough photos of yellow-jacketed bike-riding Charlie so why not a few Manhattan streetscapes?

Jim and I went into the city yesterday to have lunch (Greek food!) with some friends and had a lovely time. Charlie a mostly good day, 'considering.'

Considering that, eager to get back to school after Friday's early departure from school for a neurologist appointment, he awoke at 4.50am.

As it was close enough to 5am, I got up too and made coffee. Charlie settled (happily, with a smile) into listening to music on his iPad and I decided to finish up some work (a recommendation letter for a student, an email or two). I sang along with a few of the songs (those Disney ones do stick in your head). Charlie also listened to his new musical interest). He turned down a walk and, a little after 6am, tromped up the stairs to his room. 

He was back down by 7am and got in the car (with the heat on, and Jim and me supervising), and I got ready and we were off by 7.30am. We were at his school by a bit after 8am and did some 'touring' round the neighborhoods. By 8.35am we pulled up to the front of the bus line at the Big Autism Center and Charlie went in with a pleased smile.

All was good until around 2pm when, fatigue no doubt setting in, Charlie started crying and his teacher was briefly concerned that he wouldn't be able to ride the bus home. But he was able to calm down after 20 minutes and ran off the little yellow bus just before 4pm.

Charlie and I headed out to do some errands. After a few minutes, I heard a cry, then cries, then had to stop the car as neurological storm mode set in upon Charlie. It lasted 40 (long) seconds and I hurriedly texted Jim, who was at the local library. He appeared swiftly, by which time Charlie was calm and smiled to see Jim.

We'd all like to have days, all days, that are 'incident-free.' But that's neither realistic nor, I think, the best goal to strive for. Rather, to Jim and me, it's all about learning to help Charlie through such difficult instances so that they are short, he and everyone are safe, and he experiences as little lag as possible afterwards.

The last point is very much dependent on how we--how those with Charlie---respond. Wwhat happens is not 'ordinary,' but it is important (for us) to respond in a very ordinary sort of way. If we get, ah, upset and hysterical, so does and will he. 

Texting is good as it doesn't involve me talking; when Charlie is upset, words, language, the human voice can really irk him. I happened, too, to have some grapes in my bag and after saying 'grapes' in a straightforward way, handed these to Charlie, one by one. Being able to bite on something seems to provide him with the deep pressure he needs when he is as upset as he was. (Yes, mental note: always carry grapes or apples or some such).

We went home and Charlie went straight to his room, iPad beside him (and I am not making this up---he had the photo of me you see in the left column on the screen). (Awwwww.)  He fell asleep for a few hours and woke around 9pm. No surprise that he couldn't go back to sleep for a long time. 

But, very good how he kept himself busy listening to music (especially these guys again, and the Beatles), sometimes moving around the house, sometimes at rest.

Just the daily scene around here.

And here's some scenes taken while Jim and I were talking around New York earlier in the day.

Jim walking in midtown Manhattan.

Equanimity

   Most days   I teach in a very classroom-y sort of classroom, desks in bland colors in rows, fluorescent lights, weary linoleum, dry erase boards. But Fridays I teach my Intermediate Latin class in my college's Honors House, which is an old wood-frame house with a porch and a basement and a long flight of stairs. The students (it is a small class) sit at a lovely oval table of polished wood and there is a kitchen so you can make tea and sometimes a dish of candy.

All of this is necessary to this post so you know why I had a (college-owned) laptop hooked up to an LED projector on the table in front of me, the laptop being a kind of all-in-one way to project the Catullus poem we were translating, a map of ancient Italy, images of ancient vase paintings of Sappho and the Muses, the metrical scheme for the Sapphic stanza. I was talking about one of the (or maybe none of the) above when, over the laptop screen, I saw the face of one student metamorphose into something like a horrified look. At just the same time, a student sitting beside me jumped out of her seat and reached forward.

'Dr. Chew! Dr. Chew! Your laptop!'

Just under the lower right corner of the laptop screen, I sighted a stream of what I realized was water. My phone was on the table but on top of a folder of papers and just out of the line of water. Another student was running to get paper towels, just I grabbed the laptop and then my phone.

And was instantly met with queries and then laughter from my students, baffled that I had sat so calmly in the face of inundated electronic devices. As we mopped up the water on the table and floor (and I assured the student who had knocked over a cup of said liquid, and so set the whole scenario in motion, that all was fine), and as they remarked again about how non-reactive I had been I explained, as succinctly as one can, that such unexpected potential disasters sometimes involving damage of appliances, equipment, furniture, walls, windows, etc., is, if not exactly commonplace at my house, not unheard of, along with various, often non-verbal, sounds of loud distress.

I tried to explain how, after years of really difficult moments with Charlie, for Charlie, I have learned that, for me, keeping a very, if not totally, placid and blasé demeanor in the face of what you could call crazy---

broken dishes, broken windows---

It does not help at all to reveal the worry, fear, anger, devastation, disaster, terror, etc. that one might feel on seeing chunks of the wall on the rug, not to mention hanging from cracks in said wall, and elsewhere. If your child is upset, and mine has always been so at such times (or sometimes giddy with giggles that turn quickly into severe and haunted weeping). There is a mess and it needs to be cleaned up. And there is a child, there is your child, and you have got to help him back to peaceful easy-feelingness and equanimity because you, and probably the wall, can take a lot, but for this round, it havs been enough.

I probably didn't do the best job of explaining this but I made the effort and then slipped back into pointing to the screen and the third stanza of Catullus' poem 51 in which, overcome with jealousy and feeling on seeing the woman he loves (Lesbia) talking to another man, Catullus feels his body literally go to pieces.

I didn't (which is not to say I have not ever done such). After class, I hurried out and got stuck at least four times in non-moving lines of cars. I told myself that Charlie's bus really does seem to arrive until almost 4pm and got home in time to put my bags down and books away and fold some laundry.

Charlie had done well, only seeming frustrated at the very beginning of the day, perhaps because he was hungry. Jim had taken the train up to Albany to give a speech and so Charlie did not have his customary afternoon bike ride. He clearly missed it, looking up the street to where Jim might be walking home from the train, and assented to the poor substitute of a walk with me.

It was cold under the white circle of the moon. We walked through piles of crunchy, and slimy, leaves. We sometimes did break out into a run, which felt like just what the evening called for.

We were peaceful-easy feeling as when the tide is low and the waves gentle, all the way.

A Lesson in Efficiency

Charlie's 8am dentist appointment on Monday probably clocked in as one of the speediest ever. He got his teeth checked (no cavities and minimal plaque build-up), brushed (with his own toothbrush and preferred toothpaste) and fluoride applied in under ten minutes.

We all decided (quickly) that there was no need to scrape Charlie's teeth---the dentist has been able to do this at previous appointments but it seems best now to have that sort of thing done when Charlie does not have to be coaxed to 'say ah' and sit for one minute longer in the dentist chair. Twice yearly appointments for check-ups (just to make sure there are no major teeth issues like an abscessed tooth or a bunch of cavities) and dental surgery for big cleanings and fillings and such: At this time in Charlie's life these seem the best options. Enough plus that Charlie did well in the brief time he was at the dentist's office Monday and that he got a fluoride treatment; that he brushes his teeth though rather too hastily---certainly better than nothing.

Sure I was hoping Charlie would so learn to tolerate dentist visits that he might one day be able to have braces put on. It's been a long time since we entertained such thoughts, our focus now on 'good dental health' and keeping dentist visits as peaceable as possible. Charlie does not, indeed, need them, except for cosmetic reasons---reasons which, in the grand scheme of autismland things, matter pretty minimally.

What does matter was that Charlie, thanks to one viewing of a a Stories2Learn social story, fully understood where he was going Monday morning. In fact, he got up before 7am (it did help that we set the clocks back here in the US on Sunday morning to regular time so Charlie's body clock was an hour ahead of the clock time) and was dressed and saying 'doctor' while Jim and I were still scurrying around to get out the door. When you factor in all of his sensory sensitivities, a dentist office must seem like an amusement park of sounds, colors, smells, sensations. Charlie was smiling away when we entered the dentist's office and, while not going to sit in the chair one second longer than he did, did well.

Charlie was fine going to school afterwards and, while we did note him tapping on his mouth more than usual, he was ok. He did his usual afternoon bike ride with Jim and had a good time hanging out with my parents. He did have trouble going to sleep and wanted a second bike ride but of course it was too late and, while Charlie clearly had a lot of energy in him, he managed ok staying in the house, and running up and down the stairs quite a bit.

Eventually we (well, some of us, Charlie included) donned sweatshirts and gloves and went out walking. The air was warmer than it had been earlier. By the time we got back home, a whole panoply of stars was out.

You get what needs to get done, no more and no less, and then you carry on with the next thing, and the next.

Varying It Up

The sun shone down warm and constant on us during a 9am walk (especially on the part of the walk that involves walking across the very large parking lot of a drugstore and a gym, with nary a tree around). So we were caught (though not unpleasantly) by surprise when, a couple of hours later at the beach, we got so thoroughly wind-blown----

 

---that we made an emergency purchase of new sweatshirts for Jim and Charlie. Jim chose them, because they have a fish design (I'm the only one in this household whose last name is Chew.......) on the front and also because they're green. 

Since Charlie was persuaded to go sans winters, he hasn't been wanting to wear any jackets or sweatshirt, regardless of the temperature; for awhile (as you can see here) he kept wanting to wearing a pair of fleece gloves outside, but he stopped doing that some time last week (I'm not sure why; ok by us). So I was dubious about him donning his new sweatshirt, regardless of how cool it might be.

And then he pulled the sweatshirt right on and rather seemed to enjoy wearing it.

I'm taking Charlie's willingness to wear the sweatshirt as one more sign of how accommodating---flexible---he has been this past week, plus.  Without particularly trying to, we've been asking him to accommodate to our needs, such as waiting for a set period of time before going to the beach, so we could get some work matters done. He was been quite willing to do, without any sort of fuss.

I think the timer (on the iPod touch) has been helping a lot. It is (keeping in mind a comment from Regina) us who've been initiating use of the timer; something to work towards would be (just thinking as I type here) Charlie getting the timer on his own, setting it, and therefore being more in control of waiting; of knowing that he can be in control of waiting.

On the other hand, telling Charlie that we needed to go on a short walk rather than a long one as it was just before bedtime led to a very difficult half an hour of difficult things. (The steamy, muggy air---predicting a thunderstorm---did not help.) We got through it but it's always tough to have a peaceful weekend and then 'excitement' (I know, a euphemism) at the end. 

I've been talking some with Charlie's teachers about varying the walks---the distances, the routes. I'm also thinking of using some visual cues (photos? arrows? lengths of time?) to help Charlie understand that 'sometimes we do this walk, sometimes that.'

Because really, the walks and bike rides and all the physical exercise we've been doing with Charlie have been immensely positive. He's clearly got a lot of energy and needs an outlet for it; we think he's been asking so much for walks because he's seeing a connection between physical exertion and self-regulation. The fact that Charlie's learned that there are things he can do to calm himself and not have full-out difficult 'neurological storms,' is a huge thing in and of itself and one to start building on.

You can see what we'll be working on teaching this week, and in weeks to come.