We Go With Him

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.

 

 

Preventative Measures

Before heading out to the New Jersey horse country bike path, we stopped to at a gas station to put air in in the bikes's tires. As Jim did this, I was idly looking around and noted the license plate on a woman's car:

CUREFRK

As in, 'cure freak'---someone who is a freak about a cure for some disease?

I didn't see any ribbon magnets or stickers indicating that the woman in the car had some particular kind of curing in mind. The license plate reminded me of a topic that I've thought a lot about, and once posted regularly about on Autism Vox, the whole issue about 'should we cure autism,' of 'acceptance vs. cure.'

I still think that talking about 'curing' autism is at least a bit misguided. Autism isn't like cancer. Charlie was born as he is, with certain neurological and other challenges/impairments/deficits that we've done our best to help him address through years. He wasn't even 2 years old when he started therapies and an educational program---Charlie's been in a school sort of setting for the vast majority of his life. I understand people's hesitations about giving children psychotropic and other sorts of medications, but they can help (all while monitoring a child's health and responses very carefully, and with regular consultations with a doctor). And it feels a bit like a no-brainer now, but daily aerobic exercise seems to really help Charlie stay in that peaceful-easy-feeling way, with 'behaviors managed' and calm and carrying on being the routine rather than the exception.

Since Charlie was younger and we tried some biomedical sorts of 'treatments,' there've been more than a few books on curing and preventing autism published. I read one this past summer and, if I can get some projects done up to a point, I'll be writing about it at Care2.com.

'Prevention' is something Jim and I have been talking about more and more, but in a very different sense. Acceptance of Charlie and his challenges, and his unique ways of being, became part of our everyday a long time ago. Too, for us, the more we've let go and let be, the more peaceful-easy feelingness we seem to have in our household. 

It's not that we've 'given in,' or that we 'give in,' to 'whatever Charlie wants and just don't do anything.'

It Changes Just When You've Accepted It Won't

In a public restroom, I was waiting to wash my hands. There were two children at the sink, a boy and a girl, both dark-haired. An Indian woman was talking to the girl and waved her hand in front of the motion sensor on the paper towel dispenser, then handed the girl (whose hands were still beneath the running water) a towel. Another women, blond and wearing white jeans, was standing just past the girl's mother; the door opened and another woman in a uniform---a worker at the restaurant we were at---walked in and, seeing the small crowd in the small space, walked back out.

The woman with the blond hair came forward and I moved back and then to the right as I realized she was going to stand behind the boy. He was just a couple inches shorter than me and, like the girl, quite engaged in washing his hands. The blond woman started speaking (in Spanish) at length, about (I guessed) washing his hands, as he continued to do so.

I washed mine and left and thought, it's been a long time since Charlie came into the women's restroom with me.

There was a time, of course, and a fairly recent time at that, that Charlie always did. I always felt a huge sense of relief when the stall for persons with disabilities was free as it gave the two of us more space to maneuver in, especially as Charlie got taller.

Of course, as Charlie got taller, as in as tall and taller than me, it became more and more awkward for him to be in the women's restroom (in the event that I couldn't locate a unisex restroom). No one ever complained; indeed, whenever I explained why Charlie was in the woman's restroom, people were more than understanding. Even in a venue that seems 'as safe as can be,' you can't know what happens after the door of the men's room shuts. If anything did happen, Charlie would not be able tell me.

But like I said, it's been a while since I had to bring Charlie into the women's restroom. At the moment, we don't go to places like malls or movie theaters anymore (and those sorts of places are now more likely to have unisex restroom facilities). When we've been out, it's mostly been all three of us, so Jim can accompany Charlie to the restroom. And, Charlie being older, we haven't had to worry with anything like an accident in quite some time.

I'm not sure if the boy I saw washing his hands in the women's restroom yesterday was on the spectrum or had any sort of disability. Perhaps his mother was just worried about him going into a public restroom on his own, something I can certainly understand. I was reminded of how finding a place for Charlie to use a restroom, and having again and again to go through those moments of registering the questions on other womens' and girls' faces and explaining the situation as efficiently as possible---how these dominated my thoughts whenever we went out. Charlie himself was well aware that something like an accident was not right; if any such thing were to happen, there was not only the issue of clean-up, but of an unhappy child. Until quite recently, I still carried a complete change of clothes for Charlie in my bag and, indeed, came to think that the day might not come when we could do without those.

And at that point, I didn't feel mad or defeated that I was still carrying that change of clothes. I wouldn't have wanted to hear this when Charlie was a toddler or 5 years old. Over time, as our understanding of Charlie's abilities and challenges, his limitations and his strengths, has become more refined, I found myself just accepting the plastic bag of clothes in my bag as just another thing I needed to schlepp, along with my wallet and phone.

And now it seems we can leave the extra clothes at home.

I do have some extra clothes in the car, though. Now that we seem to be into this drive-and-bike mode, you never know when dust, dirt, mud, rain, etc., might strike. (Yes, there's extra clothes for Jim, too.)

Charlie 'only' did around 14 miles total on his bike Saturday. He preceded his ride with a mid-morning, post-brunch-munch session and then a snooze on the old blue couch, during Jim met with one of his graduate students and I did a long list of long-left-undone tasks, thinning out the piles of papers we have stacked in too many places and writing a letter of recommendation. Then, with Lester Young and Charlie Parker streaming from the radio (during their birthday broadcasts), we drove back to New Jersey horse country for a bike ride on a blissfully beautiful blue sky day, following which Charlie took another nap. He got up and asked to ride in the white car, which gave us another chance to hear those birthday broadcasts (they're going on 'round the clock till Monday) and to discover that Charlie has a new musical interest.

Charlie often puts his hands over his airs when he hears female singers, emotionally when their voices rise with emotion. But he sat at attention to hear Billie Holiday sing several numbers and together we listened to her voice on the short ride home.