We Go With Him

A Happy Saturday Visit With an Old, and Very Special, Friend

 

The highlight of Saturday was the brighter-than-sunlight smile on Charlie's face when he saw, and got a huge from, one of his very first ABA therapists. She and her husband flew out to New York Saturday on some business and kindly took the train to our New Jersey town.

We were actually just returning from a Jersey horse country bike trail bike ride when they got to our train station. Fortunately there's a very nice café (which I have actually drank coffee in on one of those rare occasions) in the center of our town and our friends had lunch there while we got Charlie his usual after-bike burrito and then came home.

This therapist was in her senior year at the university where I was teaching in 1999 when we were first looking for students to do ABA with Charlie. I still remember meeting her when she walked into my windowless office. She was at the first training session we had in our second-floor duplex on Ashland Avenue in St. Paul, when Charlie cried, cried, cried at having these people trying to get him to sit in a plastic purple chair hey what!.

Actually, when our friend had her first turn getting Charlie to come to the table and sit in the chair, he didn't cry.

Later, when he was doing a full (40 hour) schedule of ABA sessions, he often climbed up on a futon couch to look for the therapists; he always knew our friend was there when he sighted her car, a red SUV. He took to all of the young women who were his first ABA therapists but he especially took to her. Charlie was preschool-age then and she'd pick him up in one of the plastic purple chairs and give him a "Jetson" 's ride, or push him around in a laundry basket. She babysat him a couple of times, too, and, after we moved back to St. Louis in May of 2000, she came to visit us. Nine years ago, Jim, Charlie and I went to her wedding and (I think I'm remembering right), walking down the aisle after the ceremony, she actually stopped on seeing Charlie as he gave her a very big smile.

We've stayed in touch over the years via the Internet and, on hearing that she and her husband would be out here on the East Coast for a few days, of course had to get together. Jim and I told Charlie at the most two times that she was going to visit; I'm sure he committed the thought to memory on hearing it the first time.

After meeting her in my old office 12 years ago -- it was a time when all was confusion, when we weren't sure we should be doing ABA, when we were wondering about biomedical remedies, when 'autism' was the scariest of words though it was Charlie's diagnosis -- I remember thinking, things are going to be all right. Many have been the trials and tribulations since then (understatement of the decade, right?): Thanks to Charlie's long, early days of teaching and learning with our friend and his first therapist team, things are still -- are still going to be -- all right.

Sounds (a Crash) and Sense

Charlie woke around 5am Sunday morning and, after staying in his bedroom for awhile, went downstairs, knocked everything off my desk and sent a bookshelf crashing down around 6.30am. Clearing tables, knocking over shelves, throwing plates (as last Sunday), seem to be the latest 'interesting' (ok, 'challenging') behavior that Charlie has been doing.

If you've followed Charlie's story for awhile, you know that, while the above are far from ideal ways of expressing frustration, anger, anxiety, and the like, they are an improvement over some things Charlie has done in the past (head-banging, to name one). The clearing/knocking-over has been going on at school, too: While once we used to get into drawn-out (and uncomfortable) back and forths with school personnel about a behavior only occurring in one place or other (i.e., home vs. school), now we just expect to see the same things in school and at home. Perhaps it sounds odd, but I also see this as an improvement, Charlie being equally comfortable in both settings and a general spirit of working together prevailing between his teachers and us. 

On Sunday, we went downstairs and moved a few things around and, well, the crash that began the day by no means characterized the rest. 

Charlie understood that he shouldn't have done what he did and (to fall back into 'behavior-speak'----years and years of ABA and special ed will do that to you) things didn't escalate. The mess was cleaned up, giving me a fine opportunity to dust and discover a few misplaced items. Charlie got himself some breakfast and let Jim use the electric shaver on his cheeks and waited, sometimes pacing in the front yard or running up and down the porch stairs, while I went jogging and Jim did some work on his computer.

A fine bike ride (12 miles and very fast) followed in Jersey horse country. Indeed, Charlie was quite raring to go soon as he got out of the car and pedaled off before Jim. He had the same over-the-top energy for an evening bike ride after dinner. Jim and I observed to each other, while Charlie has no official diagnosis of ADHD (as Jim does) there are certainly moments when he bears more than a few traces of it, with his energy levels going up and down unpredictably. Charlie also has some bipolar and obsessive-compulsiveness in his diagnostic picture, the former seeming to have something to do with his occasional bouts of intense energy, accompanied by a lack of sleep.

But the knocking over of things recalled something else to me besides these diagnostic musings. When Charlie was a toddler, and around the time before he was diagnosed with autism in July of 1999, his favorite (to the point of, yes, obsession) toy was a set of ten stacking cups. He loved to stack them up, or watch us stack them, and then knock them over, after which he often broke into peals of laughter. Who knows but he still has in him a trace of that joy of seeing things knocked about in disarray? Though, now, he certainly knows that knocking things about is not something he's supposed to do.

Yesterday Charlie also kept saying---as he had on Saturday---'dog, dog, dog, dog' from the late afternoon and into the evening. Once he gets a word, a thought, an image in his head, it's hard for him to shake it; Charlie even said 'dog, dog,' etc., aplenty while riding bikes with Jim Sunday evening, to the consternation of some pedestrians. At one point he said 'brown dog' which led me to think he was talking about the little brown dog who belongs to his aunt, Jim's older sister, whom we used to see sometimes (with her family and the dog) on Sundays, when we went up to Jim's parents' house. Charlie had been curious about the dog (her name is Portia) at first, but then became very fearful of her and used to run out of his grandparents' house soon as Portia came running. and barking, in.

As for the early morning 'shelf-capade': Who knows what Charlie had been thinking about, dreaming about, in his sleep? Maybe some memory had been triggered and, on waking, he'd had something he had to express, and, at that hour of the morning (and still half-asleep),  that was the way it got expressed.

Perhaps it sounds like I'm making too many excuses for 'bad behavior.' But as Charlie grows older, and his thinking and understanding evolve and grow, the fact that his communication skills lag far behind must make things more difficult for him. So many thoughts, ideas, feelings, stories, ponderings, so few words. 

On the other hand, with Charlie, just one word --- 'dog'--- can be enough, can say a lot more than it seems to; can speak of fear, fascination, memories.

For sure, whatever Charlie tries to tell us in whatever ways, we'll be listening. 

(Just hope we don't hear too many more crashing noises, at least not at 6.30am.)

 

About ABA & Shoveling (Snow)

Yes, the shoveling thing again, last evening.

I have to say again, Charlie's way of shoveling snow has that uniquely Charlie-esque quality to it. It's a bit more that he is moving snow so it is, ah, 'properly distributed' in the front yard.

I'm excited that, after trying to show him how to hold shovel for years, he has just been doing it. After all, he did master Non-Verbal Imitation With Objects (one of his first ABA programs, except the objects then were a block and a bucket) some 11 1/2 years ago. Jim thinks that, after watching us working away with the shovels for all these years (Jim especially), Charlie just up and decided he'd give it a try too.

We're supposed to get more snow Wednesday evening, so I guess Charlie may have a real chance to put his new shoveling skills to the test.

More on the After Effects of Years and Years of ABA

Happily, the call I got at 5.30am Tuesday from Charlie's school was for a 'delayed opening' rather than an all-out snow day. School started at 10.45am; after Jim and I had shoveled and scraped away the icy snow and slush, Jim drove Charlie off at a quarter after 9am. They were very early (even with the delayed opening) so they got bagels and drove around here and there and a relieved Charlie went into school.

If you've still got a snow day where you are, total sympathy, plus. I'd like to say that unexpected days off are easier for Charlie now than in the past. I think he knows what 'snow day' means and, after last winter's series (a rather epic-feeling one, at that) of snow days, Jim and I have a very good idea of how to plot out the day to help Charlie get through it. Nonetheless, slogging through a day when you're unexpectedly thrown together and when you often can't do much outside for long periods can be challenging.

We did use to take Charlie sledding. I do think he enjoyed the thrill of going faaaaasssttttt!! down a hill. But sledding always ended up being one of those activities in which Jim and I put in about 92% of the physical effort: dragging the sled up the hill, getting Charlie to sit on it, getting Charlie to place his hands and feet in the right spot, worrying about Charlie falling off the sled with resulting 'upsetment,' worrying about Charlie pitching off the sled into the snow with more 'upsetment,' worrying about Charlie colliding with another sledder/s due to his being unable to steer the slide. Not to mention the soggy, cold, wet trek back to our car.

I'm feeling in need of some hot chocolate at the thought of it. Except, Charlie never showed an interest in such, hot liquids not being to his (sensory) liking.

I guess I sound like a killjoy!  Jim did often sit behind Charlie to help with the steering. But thinking about our something more like misadventures in sledding reminds me that often, as parents of kids with disabilities, we have to put out 92% plus effort. And then, quite often, all the things about some activity that parents of typical/not-disabled kids speak glowingly about ('sledding was so much fun, we've got to do it again soon as the next snow day!'), are things that have the whiff of 'ordeal we barely got through in one piece' about them for us. Which is not to say I'm not glad that we did try things like sledding.

But I am rather glad we can say we did them, and have, as Charlie has gotten older, focused more and more on the things that he is inclined to do such as, you guessed it, bike-riding. Riding bikes has indeed become a 'sport that knows no season' around here. The yellow jackets and super super warm gloves have made a huge difference. Jim and I have also become quite adept at loading the bikes on and off the rack on our car very quickly. In full belief of 'division of labors,' it's become my job to put the bikes safely away in the shed in our back yard after rides: Jim is doing all the bike riding with Charlie  (not to mention the driving). Yes, we do want Charlie eventually to help out putting away the bikes, but at this time we're pleased enough that he rides uncomplainingly in quite cold temperatures.

Of course, icy slush and snow make bike-riding conditions treacherous so I don't know when Jim and Charlie will be back on their bikes (but you know us.....). Yesterday Charlie and I did a walk around the neighborhood instead. He has definitely been far less interested in walking than bike-riding and this walk occurred in the evening, after Charlie had said 'no walk, no walk' earlier.  We definitely take the 'just biding our time' strategy now: Charlie is 13 going on 14 and he needs to assert himself. 

Too-- due perhaps to years and years of taking an ABA 'do this---then you'll have this' approach---we used always to insist that Charlie do something we wanted him to do, before something that (we opined) he wanted, like a ride in the car or some such. In the past year, we have been doing the opposite and while, on the one hand, we stand to be charged with 'just letting him do whatever he wants,' the result has often been that Charlie doesn't seem to feel that he constantly has to do X to get Y, and just comes around to asking for X (the walk, last night) on his own. 

I only hope he doesn't ask to go sledding, as the sled got 'recycled' in the last town-wide clean-out-your-basement pick-up last fall.

But, if Charlie really wanted to, we could get a new sled (Target is never far away). A growing-up boy would need a bigger one than we used to have, anyway.

And maybe he might want some hot chocolate, too.

 

Going Somewhere

It was all blustery wind and pelting rain as Charlie and I drove up to the Big Autism Center on Wednesday morning. We had gotten a late start as he had been slow to get out of bed; hard to blame him as the weather was the just the sort which makes curling up under the covers not only an attractive option, but the only seemingly viable one.

Charlie has continued to start the day by insisting on wearing his 'costume' (another Jim-ism for that blue shorts and green shirt). I usually leave a change of clothes right in front of the door and, after saying 'no,' Charlie has assented to change. I also try to say something like 'yeh, the blue shorts and green shirt are great but let's wear these other clothes today,' so his choice and preferences are validated; so that, hopefully, he does not feel like we parents are simply steamrolling over his wishes.

Certainly we did that in the past. Take the photo from yesterday of the three pairs of shoes and Charlie's iPad all arrayed in a neat square. I used to feel that we had to break up and change Charlie's lining up of things, to help him get out and beyond his 'rage for order.' Most behaviorists also encouraged us to do so and based on how, how, how very insistent Charlie was on keeping various items lined up according to the wood floorboards, it was important to teach him that things could be moved.

These days, Charlie does not react in that way when his stuff gets moved out of his order. So we leave his arrangements as they are. I sometimes get a clue about what Charlie is thinking from looking at the array: Jim's are the orange sneaks in the upper left beside the iPad, and the black Merrell slip-ons are Charlie's. The gray sneakers beside Charlie's own shoes are a pair he appropriated from my mom; Charlie has also been insisting on putting those shoes on his bed at night.

Other little signs of his being able to work around his own need/rage/insistence on order: While driving in the pouring rain on the highway yesterday morning, Charlie started to ask for a soda. There have been mornings when we have left quite early to take him to school and, sometimes, stopped at a convenience store or a bagel shop. Since we were late Wednesday, there was no time for any of that.

'Yeh, you're thirsty,' I said.

'Thirsty,' said Charlie. 'Thirsty.'

He said the word a couple times more as we headed towards our exit from the highway. There, Charlie---as he does most every morning---pointed ardently to the right and said 'this way, this way.' We have taken him for rides in that direction if there is time (such a ride takes us past some old haunts, as we lived in the town next to the Big Autism Center for three years). Again, there was no time for such Wednesday morning and when I quietly drove to the left towards the school, Charlie sat back in his seat and looked as if he were breathing something of a sigh of relief.

The rain was coming down super hard and fast as we pulled up to the school where a few aides were still waiting for buses. One woman beckoned us over and very kindly stood with the raindrops pinging off her plastic jacket as Charlie slowly got out of the white car.

I mentioned that I thought he might be thirsty. I watched Charlie, messenger bag over his shoulder, stride into school.

When he came home off the bus, Charlie made sure to place his black shoes at a proper angle to Jim's on the living room floor. After an afternoon of pleasant hanging-around-the-house, he was standing tapping this and that and that on his iPad when I heard my voice say

'Let's go somewhere.'

I had recorded that phrase on the Tap Speak Button app. Charlie repeated

'Let's go somewhere'

and I got right up and we did.

I'm not sure if he just tapped that phrase by chance. I've recorded several phrases and a list appears when you tap on the app. 'Let's go somewhere' is the first item in the list and Charlie, now used to tapping on lists of song titles from using the iPod app, must have just tapped on the number one item.

But he did really want to go somewhere, just as he said.......

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.'

Hypotonic No More

Thanks to Jill, Antonio DA, Barbara, and Melanie for your comments on Monday's post, Stick With It, in regard to the curious pattern in Charlie's learning:

'An initial big effort with a concerted output of energy, followed shortly by a request to be done with it, and now, and stated adamantly.' 

Jill wrote referred to this pattern as a 'seeming lack of desire of autistic people to take action on other than one's own terms.' I think the word 'seeming' is key: While Charlie might, to the untutored eye, 'seem' unwilling to do some requested action, I think there's a bit more going on than meets the eye. As Melanie commented in reference to her son, I do think that it just takes Charlie longer (and often much longer) to figure out what is being asked of him; to 'process' and work through the instructions (especially when delivered in language) being said to him, and then to get his brain to get his body to do whatever he's being told, or thinks he is being told, to do. 

Language---particularly of the spoken sort---just seems to be incredibly difficult, and taxing, for Charlie to figure out. He knows he is supposed to attend to what is said to him, but what is instantaneous for many of us (listening, understanding, responding) takes him several steps to carry out. And (as Barbara pointed out), Charlie is working through more 'complex mental processes' than 'simple stimulus-response': He needs time to absorb, think, plan, do.

When he was just getting started learning during his first ABA sessions back in September of 1999, it became apparent that Charlie seemed to catch on a bit more quickly when skills and tasks were presented to him non-verbally, and when he understood that he was to imitate the task. Indeed, one of the very first skills that Charlie learned to do was called 'non-verbal imitation with objects.' He learned to copy whatever we do using the request 'do this.' First it was 'do this' and dropping blocks into buckets; then, he learned (it took awhile) to imitate simple actions, like waving or patting one's own head. Gradually Charlie learned to see two actions done and then to imitate them, and also to imitate sounds. Imitating three actions in a row was harder. There was more, of course, to remember and often in doing actions #1 and #2, #3 would go by the wayside. 

It was while teaching Charlie to imitate actions that I first started to notice how his versions of most actions were, or seemed to be, partial. If we raised our arms straight over our heads he would just hold his up with elbows a bit crooked. It was difficult to tell whether he was saying /b/ or /p/ or /m/ because Charlie did not round or move his lips fully when he was little. We learned about hypotonia---low muscle tone---and this helped to account for the seeming 'half-way-ness' of Charlie's actions and exertions. 

Too, it occurred to us that, while we perceived Charlie not to be exerting himself fully, he might very well be---might very well consider himself to be, and be puzzled about why he couldn't get his body to do the things we were asking of him. When he was much younger, 'reinforcement' in the form of verbal praise, a tickle, a wind-up door, a toss in the air, motivated him. Now Charlie has a token board so he can track how many tasks he must complete before doing some preferred activity (the days of food and toys and other stuff motivating him are long-gone); sometimes, I suspect he just gets through his programs for the sake of completing them, having (to some extent) learned that finishing something is its own positive.

Antonio DA, mentioned what Donna Williams terms 'exposure anxiety.' I hadn't read much on EA: On her website, Williams defines it as 'the involuntary self protection responses of compulsive avoidance, diversion, retaliation.' What I found particularly of interest was her noting that someone with EA '

'..... can sometimes initiate/communicate but often only when the 'heat is off' and nobody is wanting/watching/waiting for their action or response (compliance to a prompt is not initiation) but some are compelled to avoid, divert, retaliate against their own initiations (akin to apraxia).' 

That is, the seeming not-responding/not being willing to respond is not so much about what a behaviorist would call 'non-compliance,' but done out of an honest need to prevent one's self/being/brain/sensory system from being overwhelmed, by too demands, by too much stimuli. Certainly it's been the case that Charlie has one time done something very well (said a whole phrase perfectly clearly, for instance) and then not been able, or not seemed to be able, to repeat it again. And then one day, after a lot of gradual and persistent effort, he is able to say that word or do that action, according to his own command. 

As am illustration to all this: Charlie and our long walks. Back in the fall, we started to note that an increase in (aerobic) exercise in the form of neighborhood walks seemed the best way to calm Charlie when in severe neurological storm mode. Charlie was initially reluctant to do these walks. Once or twice he surprised us by wanting to go on a long, long walk of 5+ miles rather than a little mile jaunt. Then he only wanted to do the short walks. Jim and I tried cajoling and coaxing him to walk for longer (so we could do one long walk instead of 4 quick hops) but Charlie was all 'no no no.' Then one day he wanted to 'go long' and indeed got really irked at me one evening when I told him we couldn't. Now he only wants the long walks.

And also the long bike rides, and the hot weather is no deterrent. It was in the 90s and very humid with an overcharged sun Monday. Charlie power-walked/ran when he and I went on a 'walk' (kind of hard to say we were walking, technically, we went fast) at 3.45pm, after which he called for a bike ride with Jim.

I have to say, I've been really admiring Charlie for what seems to be a very high tolerance for heat and generally unpleasant weather (with bad air quality Monday, too). Charlie never complains, just keeps soldiering on for block after block. This is the kid who wore this helmet for months (including last summer at his old school), and who once had a sore in his mouth for at least a week before a speech therapist saw it and we finally understood why Charlie had stopped talking, other than saying 'pee-ah-pee-uh.' If things were different, I guess Charlie'd be ok with wearing a football or lacrosse helmet, shoulder pads, jersey, etc., and scrimmaging for hours at sports camp under the burning July sun.

 That said, as you may have guessed, the result of all of this exercise is that Charlie (and, um, Jim and me) are in shape. In Charlie's case, the more his physical abilities have increased, the clearer his articulation and the more extended, broader, bigger. You couldn't really say he's hypotonic anymore.

Often I think Charlie sprints or pedals at super-fast speeds simply because---having been a late walker (not really till he was 16 months old) and having to struggle to do things that many of us just do without trying (like talking)---he's kind of amazed, and pleased, that he can.

Here There Be Dolphins

We had a little triumph yesterday at the beach and it wasn't of a swimming sort.

Charlie did have a superb time in the ocean (a bit more on that to follow), Afterwards, Charlie, in accordance with the latest routine, asked to ride the ferris wheel. We stopped for some sandwiches---I'm a vegetarian but I always make an exception for Jersey shore seafood---and went by the little amusement park by the beach. We parked and, noting the time (just after 5pm), started walking towards the ferris wheel which was very clearly not moving.

Obviously not a good sign---indeed, we found,the rides did not start till 6pm. 

We asked Charlie if he'd like to go back to the car and drive around---no, the response. We talked about waiting and Charlie stood with hands under his chin and looked tense and worried. We mentioned the timer and he said 'no timer' and then 'timer' and I went back to the car to get it.

Just as I was shutting the car door I saw Jim and Charlie approaching. We got into the car and Charlie started saying 'beach house, yes beach house. Yes beach house!" Over, over, and over.

We've been staying for two weeks in August at the same lovely white house on this beach for the past five years. This year, we've decided not to: We did fine at the house last year but, for this year, day trips have seemed the wiser choice (except for the fact that our still less-than-a-year-old-car has an awful lot of miles on it). The beach house happens to be near a long row of parking space and we've been parking there and walking to the beach, the same one where Charlie really learned to boogie board and swim; as we discovered last week, at least one of the lifeguards recognizes us. Too, we recognize a couple of families who must have their own houses, as we've seen them and their kids over the years. We figured it will take some efforts to explain to Charlie about not staying at the beach house but he really did seem miss being at our our house last year; it's not (as suggested by our numerous day trips to the beach) not terribly far away.

Saturday, my thought was that Charlie was that Charlie was asking for the beach house so ardently as a way to deal with not getting to ride the ferris wheel. Perhaps he was thinking of our stays there and how we could just go back to the beach house, hang out, and try to back for rides? (Although, for the past couple of years, he has had very little interest in rides; we only went once or twice last year.) 

Charlie continued to say 'yes beach house,' very insistently, as Jim drove back to it. We uh-huh'd and said 'yeh, yeh' in a non-committal kind of way, again (as I had on Friday about the position of the driver's seat) not trying to use a lot of words to explain things like 'the ferris wheel is closed now and we can go back and ride it at 6 o'clock' and 'this year we aren't staying at the beach house so we can just look at it right now but not go in.' We weren't exactly ignoring Charlie (hence the uh-huh's and 'yeh' talk)---weren't using the ABA principle of 'putting a behavior on extinction' by not responding to or, to be more precise, rather (here's the behavior-speak) not reinforcing it. (We were indeed reinforcing Charlie's requests with our uh-huh-ing.) 

We've certainly done our share of 'putting a behavior on extinction' in the past. 'Stim-talk' like humming or repeating words over and over are prime candidates for such an approach. Head-banging is not---or rather (and this is from our experience with many years of dealing with self-injurious behavior and head-banging in particular; I am NOT a behaviorist and I'm sure we have made many an error in addressing SIB's with Charlie but it's one thing to be a behaviorist and another to be a parent (as a good behaviorist will acknowledge) and, moreover, in addressing Charlie's SIBs, we've most often felt that you just have to keep trying and working on it, no one really has the answer, end of diatribe!)-----rather, if a child head-bangs once, one might 'pretend' to not notice (i.e., appear to ignore) it the first time, in the (frantic) hope that one won't be reinforcing such an inappropriate behavior and it will just never happen again. In some cases, the child does not indeed head-bang again. 

That not being the case for Charlie, we have had to address SIBs in other ways. Simply ignoring such behaviors would obviously be dangerous; the fact that you can't put them on extinction means that one must seek other ways to minimize and (ideally) eliminate them.

But back to the beach. 

We got to the beach house and parked opposite it. 'Open door' said Charlie. 'Taking a look,' I said. 'Look,' said Charlie. And then, 'Open door.' 'Just looking, pal,' said Jim. 'Just looking,' said Charlie. After a minute more of this punctuated with quite a few 'yes beach house' 's, Jim started up the car and we decided that, rather than doubling back towards the rides, we'd head home. 'We're going that way,' said Jim as he turned left. 'That way,' said Charlie. And he stopped talking about the beach house, opening the door, etc..

After a stop at a McDonalds that is located just a mile or so from the entrance to the beach (thank heavens, is my view now; I used to think it a major nuisance to see that golden M but things change), we had a peaceful ride home. The rest of the day was peaceful: A walk with me (driver---Jim---needs to rest!), consumption of a great deal of vanilla soy ice cream, listening to music, another walk with Jim before bedtime. The only thing that marred the peace was fact that, today being the Fourth of July, it was a major sensory challenge outside our house with fireworks going off left and right, extra cop cars with their lights flashing, many cars cruising by with windows rolled down (the better to blare out the hip-hop), motorcycles (including that of our neighbor two doors down) revving off into the dark, hot night.

Charlie handled all of this with aplomb.

Same with the ocean. Regarding which:

Once we got to the beach, Charlie led the way across the parking lot holding his boogie board. He ran in a straight line down to the water and immediately got out when Jim directed him to swim between the flags. Then he ran as if hell-bent (he was running as if he had a motor were propelling him) straight into an oncoming wave. He swam with much kicking and splashing and left a trail of white foam behind him. This was repeated at least a dozen times over, with boogie board and without. 

On one of those rounds, an elderly man found himself diving into the waves next to Charlie. For a moment, they were swimming side by side, and then Charlie took off out into the ocean, on his back, head first and arms paddling (this latter was something we tried to teach him years ago---all in good time, all in good time, he gets things). He even threw in a flip As we stood on the beach, Jim sighted a dolphin and pointed far out into the waves, but, strain my eyes as I might, I couldn't see it.

The man who'd swam with Charlie came out of the water and made his way past us 'Oh to be young again!' he exclaimed to me with a big smile.

We couldn't help but to agree, and kept watching Charlie. Who, from the way he was swimming Saturday, could hold his own with the dolphins.

(And certainly, so long as he's in the ocean, with any teenage guys.)

  (click photo to enlarge)

Ebbs and Flows

Charlie having done ABA since he was 2 years and 4 months old, and Charlie having had his share of 'behavior issues,' we've become quite familiar with some patterns in his learning and in the fall and rise of his behaviors. One pattern is that, after Charlie has mastered something, he takes a few steps 'back'---seems to lose what he'd just learned after so many painstaking steps. It might be learning to build with blocks or to say 'Fisher,' his own last name: No sooner would we be checking off certain skills and programs as 'mastered' then we'd see Charlie getting stuck about where to put one block and then another, or we'd hear not 'Fisher' but 'Disher' (which latter is ok; it's still recognizable especially when pronounced along with Charlie).

Wednesday was the day Charlie stopped having to wear the helmet as part of his school behavior plan. Both Thursday and Friday morning Charlie had trouble at school (and had a good rest of the day). Saturday, after a fine beach swim and lunch, he got really upset in the car and we had to pull over, walk him, have him sit with a timer on the grass. He was ok then to get back in the car and we resumed our ride home on the New Jersey Turnpike. He wanted the computer at home; he also wanted me to bring in all of his things from the car. I brought in a few and, wordlessly (pointing at the door), indicated that he should bring them in himself, which he did after 10 minutes of asking. He and Jim went on their usual bike ride around 4.45pm; Charlie was, Jim noted, just not his usual self. He dug into a bowl of watermelon once back in the air-conditioned dining room and then---after watching an old favorite video of four children, a beach call, and a dog named Jesso---asked to shower and went to bed at 6pm. He was asleep within 40 minutes.

The weather continues to be humid and hot, though it's just one factor. Jim and I had noted other signs. On Thursday, Charlie had started to insist on bringing extra stuff (blankets) into the white car---a little sign that he had some growing, obsessive need to have things be a certain way. He definitely must have had some stomach trouble Friday morning and Thursday's woes were in part due to a lack of sleep the previous night. I'm also quite sure that he's aware that the school year is winding down. Charlie does have a full six weeks of Extended School Year that goes into early August, but it is a change.

I've been recording 'ABC data'---behavior-speak for 'antecedent-behavior-consequence' data---for almost 11 years. It's helpful for noting patterns, like the 'just mastered and then take a few steps back' one. I've also realized that it's possible always to find something or other that could be 'triggering' a 'behavior'---weather, a queasy stomach, another student singing loudly, another student upset. And it's hard to say it, but sometimes things just happen.

Going back to the 'just mastered and then a few steps back' observation. One reason Charlie may falter after having learned something and then have to go back and relearn it, is that he may be feeling some kind of unspoken pressure to perform and keep doing well and (time and time again), it's been the case that Charlie gets anxious from that kind of expectation, and struggles anew. Swimming upstream against a heavy current has always been a metaphor for how Charlie learns. Having made some good distance, he's been letting the water's flow take him in what direction it will--back downstream---and he's got some more swimming ahead. It's as if, he moves back two or three or more miles, for every one he gains.

But Charlie does keep moving. The good thing about these latest 'behaviors' is that, once the crying and calming down have passed, Charlie has been able to get on with his day. The day isn't ruined, or over, because of 30 minutes (not that they were a fun 30 minutes). We do want Charlie to know that it's ok to get upset---who doesn't in the course of a day?---but there are better ways of doing it. 

Teaching him this isn't ever going to be over. Indeed, I think it can be said that coping with change is going to be a long-term challenge for Charlie. And as things always change, and not just the weather---people come and go, one grows and ages and one's body changes, and (of course) so much, much more---just helping Charlie manage to keep the peaceful-easy in the face of the reality of life is the main task facing Jim and me, and Charlie himself.

It's the ebb and flow that we have to help him learn to be in.

 

Sleep, Ice, (No) Gas, My "Suitcase," Latin, Gore-tex. And CAM.

 Don't know about you, but we had a real Monday Murphy's Law morning. Most likely as a result of waking up so early on Sunday, Charlie was wrapped up tightly in his blankets with less than five minutes to go on Monday. After a little coaxing (which is already too much for Charlie these days), he pulled himself on his own, got dressed and into the car all while saying "Barney video," a phrase that can be a precursor to him getting very upset (i.e., having a "neurological storm"). We dropped Jim off at the train and then drove quietly (except, of course, if you're listening to The Clash, Charlie's current request, it's not so quiet). We were not yet near the school when the orange "you need to get gas" light went on.

Prompting me to think, can't they make those lights blue or green, I don't need extra alarm to get me to get gas! 

When we got to the school, we discovered that Saturday's snowfall had rendered the sloping parking lot a sheet of crackling ice. Charlie rarely falls but I instinctively, and as lightly as I could, held the back of his right arm as he got out of the car. He made it fine to the covered walkway and then started crying. This escalated very fast into something more like weepy howls, whereupon he threw his bookbag over the railing, and wailed as we went inside. Another teacher started talking in a gentle voice to Charlie. We both stood nearby and then Charlie took off his shoes and socks and dumped those over the rail and then his coat (but I grabbed it). Two behaviorists and an aide appeared and spoke to Charlie soothingly. At first grew silent and started walking, then he started running at top speed.

I let go a deep sigh. The other teacher told me she teachers 9-year-olds, adding "it happens to everyone." I nodded, oh yes.

We do know why families turn to treatments such as those based on Complementary Alternative Medicine like those critiqued, and rightly so, in a recent Los Angeles Times article. Things can be really, terribly tough and really just awful. But it's not that Charlie and kids like him are "aggressive" or "violent," but that they have tremendous, complicated challenges with communication and their sensory and neurological systems, and these can lead to what we call "neurological storms" in Charlie. Today reminded me again that some good teaching, and a deep dose of compassion, can go a long way.