We Go With Him

The Last 2 Lines of 'Easter 1916' By Yeats

We drove down to the beach where we used to stay at the beach house on Saturday morning and drove on sandy streets and sand hills (they really gave the right name to that hurricane) and Charlie said 'no bike.'

You cannot stop an object already flung in mid-trajectile and we drove back home and Charlie called for a local bike ride, which he and Jim are on now.

Last night, Charlie said 'no yellow jacket' and 'blue coat' and wore that blue vest on a cold ride, with lights.

About midway through some car rides (the longer ones especially), Charlie has been debuckling himself from the center seat he has occupied since he was 2 days old and we brought him home from Missouri Baptist Medical Center and sat behind me, saying 'push' so I pulled up the seat and he had the legroom he needs. (I have been the same height since I was about 13 and prefer having my seat pulled up.)

'Taco' he said last night in the midst of not a litany but more like a suite of verbalizations of the things he likes to eat and the places they are and various grandparent references (both sides of the family, with Jim's parents recalled mostly through their now-changed-ownership house). 'Cindy' he bellowed in the car this morning on the Parkway, the name of a verbal behavior therapist at a center I used to take him to when he about 8. It was Disney on the way down the Parkway with a dash of Wiggles 'at Wiggle Bay' as we approached the ocean and then Abbey Road, touched off with Sugarcane Harris, on the way home.

These new spins on routines so rigorously followed by us all were not surprising given that the week was spattered with change and my return to teaching the smallest part of it.

'Hi 'has often been a word Charlie wields when he is agitated (it is no 'polite meaningless' word); this week, his repeated utterances of it, along with vividness of face, were him in the full-pitched ardor of his age. I kept doing the laundry and Jim and I have both been doing a lot of reading.

Sunrise, Sunset, and the Sun Always Rises

 

Jim took this great photo of Charlie in the woods in the middle of a bike ride. If you look closely, you can see that they got caught in some rain -- see the rain drops on Charlie's sweatshirt?

The issue of Charlie denting the trunk of our neighbor's car during Tuesday's fast rush out the door was resolved with a knock, a cheque, and a conversation with a bit of 'who's on first' humor (to those of use in the know) as we sought to explain that Charlie had hit their car and with his head. 'Well thank goodness he was wearing his helmet!' 'Um, he wasn't riding his bike when hit your car, so very sorry.' [Puzzled look from neighbor, who used to go to work carrying a lunchpail and retired shortly after we moved into our house in 2003.] 'He hit his head on the car.' 'His head! Is he all right?' 'Um, well, Charlie does this, I mean he's head-banged for a lot of years, um, he has something going on with his brain, it's kind of like seizures but he doesn't have seizures.' 'With his head? But those were big dents.'

(Well, actually, think Jim and I, they weren't really as big as some others, ahem.)

'Is he all right?' 'Um, yes' (depending on what circumstances are in question....)

Charlie is still more anxious than not, though his Tuesday had a nicely peaceful end. We went all three of us on a night walk and then Charlie brought down his blue fleece blanket and put it in front of the washing machine. It was wet and he endured waiting through the 40 minutes of washing machine time and the 30 minutes of dry-time (at the HIGH POWER setting). I had bought a bunch of peaches for a fruit crisp and peeled and sliced them -- watching me being active with such activities seems to help keep Charlie preoccupied. We used his timer for the last half-hour of waiting for the blanket to be washed and then I made his bed, spreading the blue (and still warm) blanket out and he smiled a lot and tucked himself in. He asked for a last-minute box of crackers and I found these beside him after I went to turn out the light after he was asleep.

Just after 4am on Wednesday, he woke up, still sniffling but cheery. He had some breakfast and waited around and at 5.15am we went on a pleasant walk.

He brought up a case of sodas from the basement, took a furtive look at me, and began opening each, taking a small sip and pouring them down the drain. On another trip to the basement he could be heard rooting around in the boxes and then there was a smash: We thought we had gotten all the glass objects out of this house but Charlie seems able to smell glass as he used to cassette tapes and I found a large flower vase in bits all over the basement floor, and a blue cloisonné vase unwrapped and standing at attention by the washing machine.

Yeah, bull in a china shop (and Charlie is a Taurus and born in the year of the ox, I kid you not.)

I don't miss the vase (I had forgotten it was in the basement to begin with -- not a family heirloom -- we don't have any, besides our boy and Jim's books). Charlie seems to have these dumping/smashing episodes when (1) he is sick and (2) he is anxious.

So good thing this is a superfast trip to California (Saturday night to early Monday morning).

And I got my cousin a box of silverware for her wedding. Something you can use everyday and not liable to break when thrown.

 The peaches, with some berries, are baking right now and it's starting to smell good.

 

Easy Come, Easy Go

Sunday involved three bikes rides sandwiched between an 8am walk and another at 8pm. It was warm in the middle of the day and there's supposed to be more of the same (mid-60s Fahrenheit) till midweek. We've still been putting out shorts for Charlie to wear, to school, too, and will until it finally just stays cold. After the past few years of working clothing transitions with Charlie, it just seems easiest on everyone to have one transition, rather than any back and forth.

(Besides, there always seem to be some boys who wear shorts year-round.)

The day, and the whole weekend, were pleasantly sunny and blue-skied, and uneventful, i.e., no 'behavioral fireworks.' There was the moments when Charlie got out of the car and charged, loudly, across the parking lot, evoking consternated head-turning from other people. Once I would have been defiant ('he's autistic') or worried about Charlie being 'inappropriate.' Now we've learned, Charlie will be Charlie. After the fast dash, he walked quietly into the store.

It's a point that was reinforced on our morning walk. We had passed a man with a dog on a leash and pushing a stroller. He was very engrossed in talking about the different sounds animal makes and asking the child to respond. After repeated queries about 'what does a horse say,' I heard a little voice from the stroller say 'no.'

Sometimes letting it go is the way to go.

Time Out From Timers and the Prehistoric Autistic Person

The weekends have been quite peaceful around here. Usually Charlie wants (demands) to get into the white car and drive off somewhere as soon as he wakes -- understandable since, on school days, that is the routine we've taught him. He certainly knows that weekends mean no school, but the desire to Get Up and GO has remained. I also think that this is in part a side-effect of the past years' teaching Charlie to go for a walk or run or bike ride when anxious and upset: He is always a bit unsettled when he wakes up and so wants to be in motion, asap. 

Yes, another lesson in Be Careful What You Teach Because You Might Have Overtaught It.

Jim and I not being ready to hustle out the door with bikes and gear at 8.30am on weekend mornings, we've been telling Charlie he has to wait and often using the Giant Timer app on the iPad to show him for how long. As of last week, I decided we should discontinue the Giant Timer and timers in general as I think one reason Charlie whanged iPad 1.0 on the floor so the screen completely shattered was frustration at the timer, as well as some sort of unpleasant sensory response from staring at the large fluorescent green numbers.

I've been making some very simple picture-sequence schedules using the Tap Speak Button app. We show them once to Charlie and then he has been standing or plunking himself in a chair, iPad in hand, to wait. Sometimes he says 'Jersey City Jersey City' or whatever he has on his mind over and over and we do fudge a bit on the times (we've told him '35 minutes' and it might be 30 or 40). It's neither a perfect nor a potentially long-lasting system but sometimes such a rather 'casual' procedure seems to be better, instead of something too over-systemized with too many bells and whistles.

Sometimes it's better to serve up 'just the facts, ma'am,' you know?

Anyways. I think one reason the past few weekends have been, yes, 'just' quite pleasant is that Charlie has been quite good about waiting. Both Saturday and Sunday, after getting up and dressed by 8.30am, he sat in a chair watching videos while I went running (that's part of my wake-up routine) and Jim rested a bit more (he and Charlie did over 50 miles on their bikes this weekend plus a 5-mile walk -- rest for the parents is needed! ). When told he could go out to the car, Charlie has been loading it up with bike helmets and a bag with gear (gloves, wrenches), and the big neon yellow jackets -- no, he and Jim are not wearing them. Charlie likes to be prepared and once his mind gets going on a way of doing things, he's not so inclined to go in reverse.

Indeed, some of his hyper-focus and need for certain sorts of patterns could have been strengths in a prehistoric hunting and foraging society. I'm not making that up; a USC researcher presents this idea of the 'autism advantage' in a new study in Evolutionary Psychology. What I do like about the study is how it suggests that certain autistic characteristics/traits/behaviors that are thought 'maladaptive' could have, in those prehistoric cave-people times, rather helped a prehistoric autistic person survive, and even survive among the fittest. It's all a theory, of course, but it just seems that there must be some way to put Charlie's admittedly OCD and rigid orderings of his world and its objects to good use. 

As I mentioned in a Care2 post, Charlie's need for order can be quite helpful as far as finding things like keys and bicycle gloves. He is very likely to put these always in the same place. He knows the place for filled-up garbage bags is the garbage can, so putting those there is not a chore, but a way of creating order. Lately, too, he has been doing his version of folding any loose sweaters or towels or articles of clothing by mounding them into a neat little bundle. Yes, he has been taught a more standard way of folding things, but I have to admit, I like his method because it's a sure sign that Charlie was here. 

No Kung Fu Panda 2 For Us

As the above photo attests, the bike trail won over the beach yesterday. The temperature was into the low 90s degrees Fahrenheit so a dip in the ocean would have been welcome, but it was not to be.

On the other hand, driving out to New Jersey horse country where the bike trail is and, later on Sunday, in central Jersey and then (even later) just across the Hudson River from lower Manhattan (you would not believe how many miles the white car has on it), we noted how light the traffic was. If everyone was elsewhere -- i.e., down the shore or en route down the shore -- better we were not on the road, sitting in traffic.

Indeed, Jim started crafting plans to go to the beach on weekdays, when the traffic will be lighter. He and Charlie both share a deep-set love of being in motion. (This post, by the way, describes some of how Jim taught Charlie to ride his bike.)

As we drove, I noted a couple of billboards with big greenish eyes tested into a fierce expression: Ads for Kung Fu Panda 2. I felt a bit wistful as that was the last movie Charlie and I saw in a theater. He got through the whole thing and then, on the way home, got sick in the car.

The movie's many video game-like scenes may have made him queasy, not to mention the very loud sound effects and the whole over-loaded sensory experience of being in a movie theater packed with children (some little ones crying -- there were some frightening moments in Kung Fu Panda the first). Charlie likes motion, but not seeing all kinds of colored images flash and pass in front of him on a movie screen; he likes to be moving himself. I've kept all this in mind and Charlie himself has not said a firm 'no' when we've driven past movie theaters. 

When he was younger, we felt that 'seeing movies in a theater' was something we had to teach Charlie to do. But doing so must have always been not simply trying for him, but just overwhelming; some adults on the autism spectrum have since said to me that being in a movie theater is just too much, with the heightened sounds, the smells, the huge screen and all. I guess Charlie has somewhat joined the trend of people who, thanks to DVDs and (for sure) iPads and Netflix and the like can just watch what he wants, when he wants, anywhere.

That would be either the back seat of the white car or home in his room for Charlie. After 20 miles over two bike rides -- nice and cool by the river around noon, hot and wearisome in our neighborhood in the later afternoon -- Charlie and Jim were in need of 'down time.' There's not the need we used to have to constantly check in on Charlie as when he was little; yesterday afternoon, I did catch a quick glimpse into his room: Charlie was relaxing, unwinding, with some jazz music ('Blues and the Abstract Truth') playing. After a few minutes, I heard another jazz musician, Sugarcane Harris.

Bike rides on a lovely verdant nature trail and listening to good music (and eating quite a bit, a given for Our Growing Boy): Not a bad way to spend a holiday weekend.

And, no traffic jams.

We Get Sick Together, We Stick Together

Thursday morning, we weren't convinced that Charlie was going to make it to school and that he had indeed had a relapse on Wednesday. He had  stayed in his bed  and slept since 7pm on Wednesday night, with intermittent coughing but not, I thought, as much as he had the previous nights. When I went to wake him just before 8am on Thursday morning, I heard a very adamant 'bye Mom' and 'no school' from a voice under the blue fleece blanket. I went out of Charlie's room and started to make coffee (which I haven't been drinking for a few days.....big sign that something is amiss with me; I've been tag-teaming Charlie being sick and am, by my estimates, one day behind him).

In the meantime, Charlie got up on his own, got dressed, and got into the car, and off he and Jim went.

Charlie had insisted on wearing his green shirt to school. He had not worn it yesterday but, as he didn't seem to be feeling quite as well on Thursday, we figured 'how important is it.' I had had time to slip another t-shirt into his bookbag and shortly after 10am I got a cheery email from his teacher. She wrote that he had been sitting at his desk and an aide had said 'let's change your shirt, Charlie' and he got up and did so. At lunchtime, he wanted to change back into the green shirt, but there was no fuss or ruckus.

These quite smoothly executed transitions are  a reminder to me that, very often, Charlie is not being 'non-compliant' when he does not immediately accede to a request. He might well just be thinking things through, letting his mind work through whatever patterns and pathways it follows. Then, he's ready. 

Now, if we had been aware of this how many years ago, how many unpleasant scenes might have been avoided?

By the end of the day, the extent to which Charlie felt better was revealed when he called me up the stairs for 'help': He had pulled his (queen-size) mattress off the box springs onto its side and wanted to shove it out the door of his room, and back into another room that was once his bedroom. Previously, when Charlie started moving furniture, nothing could dissuade him not to---and then, once the moving was almost complete, he would ask to have the furniture put back, and was a less than happy camper when we were not able to do so on the spot.

I told Charlie I was not up to furnitre-rearranging and called Jim (who also had not been home at the last incident/occasion of mattresses off the boxspring). Jim went up the stairs and simply directed Charlie to put the mattress back where it should be (with Jim getting the process started). Dad and son put things (pillows and blanket too) back in order  and Charlie settled down with his iPad.

Unfortunately Jim has started to sense a few symptoms of The Illness That Did Us In. We're going to try to project the healthiest of verbs out to him. But what kind of tight team o' three would be if we didn't all get sick---and better---together?

 

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.

On Accommodations

You probably have to squint a bit but yes that is me, at work teaching (ancient Greek) in the classroom. Wanting to make the most of the large dry erase board, I am using a tried and true method to access the upper echelon of said board: I am standing on a chair.

Charlie could reach the top of the board, and then some. He needs the equivalent of a chair in other circumstances, as when 'something bothers him' and he wants, needs, to communicate that, but the words don't come.

Tuesday, on a weekly grocery trip with his class, Charlie wanted some items (a Sprite, sprinkles) that were not on a pre-arranged list. His teacher gave him a choice of one of the two, and sprinkles won out, which was fine, but then they passed a display of DVDs. Charlie saw a Barney one and stopped and looked and asked for it and then walked away: DVDs of kid TV shows from his younger days can set off unwieldy emotional responses. Charlie was fretful while waiting for the bus. He got back to school okay and then, with 15 minutes to go, 'the lag' from the grocery store caught up with him. A shelf came down.

He cleaned it all up and took the bus home and was fine for the rest of the day.

Just as I am always going to need a chair to reach the top of the dry erase board, so Charlie has to do as he can to deal with things as they are. The chair is not the best accommodation out there but it works. It's a stopgap measure. Of course we seek to teach Charlie to communicate in words his frustrations and emotional stuff--- well, a lot of us human beings struggle aplenty with these.

(Though if you are looking for a language that expresses these very precisely, ancient Greek does it very well.)

Working the iPad: Stories2Learn and TapSpeakButton

First, a bus update.

Still waiting to hear about a bus to take Charlie home.

Yes, contacting the transportation department and the special ed director are on the Wednesday to-do list.

On the longer term list has been, as I've from time to time mentioned, trying Charlie on some sort of augmentative communication device. We brought this up at the last IEP meeting back in February and it was mentioned that an augmentative communication evaluation would have to be done for Charlie by someone who knows what she or he is doing and that someone (our school district) would have to pay for the eval and that's about where the whole business has stalled, I mean, stopped, I mean---

Enter the iPad.

Because if Mohammed won't come to the mountain, then the mountain better get motoring or at least, mobile digital device-ing, right?

So far, the apps Stories2Learn and TapSpeakButton seen to have some good potential for Charlie as far as prompting him to speak without us having to say for the umpteenth time 'say' and thereby helping him to communicate, especially at troublesome transition moments. Stories2Learn is billed as a program to help create social stories and I did make one about Charlie going back to school. We went over it twice before Charlie started school and I think I put in too much detail about dates and activities and so forth. I could see that Charlie could easily activate the iPad's touch screen---he has long wispy fingers and is still not able to use a trackpad on a laptop, and is lukewarm about the computer mouse.

It is very easy to upload images, type in a short phrase, and record video with Stories2Learn. So I made a 'story' called 'I like' and made 'pages' with photos of ketchup, bike-riding, using the computer, spring rolls, etc.. I've shown it to Charlie as a sort of prompt for him to talk about things he likes. Also, we've twice been in the car and i've turned on the 'I like' story to offer Charlie some choices of what he might like. Seeing the image on the iPad screen all crisp and clear and being able, at the tap of a finger, to hear a recording (of me) saying whatever is in the image has given Charlie some reassurance that he'll soon get what he'd like.

TapSpeakButton makes it easy as pie to record short phrases. I can then select from these and then put the TapSpeakButton on the iPad screen. This 'button' is big and simple-- a circle in red, blue, green, or yellow---a number of the apps for kids I've been looking through are a bit 'bells and whistle'-ish with cute animal animations, cheery singsong songs, and the like: Charlie has a lot of 'delays,' can't really read, etc., but those sorts of details can really distract him. The very simple format of TapSpeakButton is the right thing for him. He taps the big colored button, hears a phrase ('I want to go somewhere,' 'I don't want to do that'--things I intuit he is expressing with repeated no's or I want's), repeats it; over time, I'm hoping he might add some of these phrases to his repertoire.

Charlie is a long way from using the iPad independently. He doesn't see it as the 'hot new device' and is still getting used to using it. The YouTube interface ----Charlie loves to watch video clips of certain shows---looks very different from what it does on a computer Internet browser, so he is wary of it.

'He'll adapt,' Jim said yesterday evening after a bit of a stressful techno moment in which I was working both the iPad and the laptop with Charlie waiting, puzzled and patient, to see a video.

Indeed Charlie will. Just a few months ago we were wondering how he would do riding a bigger, adult-size bike and now he's become Mr. Gotta Do My 20+ Miles A Day.

And I'm thinking Charlie should ride the bus home all right, should we ever get the bus set up!

Carpe Diem Sive Pluat Sive Sit Sol

It was a rainy Sunday and we passed it quietly, around home. Still got in bike rides:

Yes, different shirts; Jim and Charlie got semi-soaked on the first ride. It looked like the rain was letting up when they left, but....... it hadn't.

Charlie has been a bit insistent about wearing that green shirt and those blue shorts (in the first photo) of late, so it was good that he had to change his clothes. To vary things up, I have been slipping in a few different shirts 'n' shorts combos. I have thought of getting more shirts and shorts in those particular colors but I have a feeling, Charlie will continue to insist on only that shirt and those shorts. Best to try to keep infusing a little change in his 'uniform' everyday. 

 

(Though I do suspect having to wear a uniform would be ok, and easier, for Charlie.)

I also think Charlie's been wanting to stick to that shirt and shorts because it's another way he's been trying to hold onto the summer. 

And hey, I'm still wearing sandals to work.

Though I did just order a new pair of boots---the previous pair got a thorough workout last winter and I have some months of rain and mini-moat puddles to trudge by/through/in when I'm in Jersey City. I do need to get a good pair of boots for Charlie too (and for Jim) as the day will come when there will be ice and snow and we'll really be missing summer.

But for now, we're riding bikes (three times on Sunday---ride #3 involved matching sweatshirts). Even if it's not nice and warm out: Sometimes you just have to seize the moment whether it's rain or sunshine and enjoy the good things in front of you.