We Go With Him

Vacation Day

I have had the frankly terrible topic of this post about facilitated communication on my mind for the past two weeks and finally wrote something about it Monday afternoon while Charlie was taking an early evening nap.

He and Jim had had a fine ride on the bike trail but, as they came back, I could hear Charlie crying. He dozed off in the car on the way home, woke up for lunch but ate little, and was edgy back in the house until he appeared on the stairs with his swimsuit saying 'Yes.'

It was too late to drive to our usual beach, plus Jim and I are still having 'what to do with a swimmer boy like Charlie' discussions. Then, as Charlie loaded his boogie board and the beach bag into the car, Jim remembered a lake in a state park that we had gone to years ago. It's not even a half-hour from our house down the Garden State Parkway and, with a smiling Charlie, there we went.

No boogie boards are allowed at the lake and Charlie handled leaving his in the car with aplomb. He ran right to the little beach and into the water, wading out with Jim to the rope boundary.

Charlie didn't swim but seemed content to roam about in the water, which was quite warm. I ventured out too and Jim had a nice chat with a mother whose 7-year-old like-Charlie son was doing dives and flips in the water, as Charlie had once done when he was younger (and smaller).

Charlie wanted to go after about 40 minutes and it was an easy trip home. He had dinner and then went up the stairs to sleep around 7pm.

After he woke just before 9pm, I took a red marker and X'd out another day on his calendar. Just one day now, I said.

'No school tomorrow,' said Charlie. Meaning, 'I don't want to go to school.'

Yes, just what we figured he'd say before going back to summer school.

One more day it is.

(Yes, it's going to be another late late night here. But I'm getting rather used to such.)

Swimming With the Dolphins

I saw two dolphins jumping out of the ocean, far past the waves, on Friday afternoon. I was looking that far out because Charlie was swimming out there too, having kicked madly through the water on his boogie board soon as he hit the beach.

We had timed Friday's beach visit to make sure the lifeguards would be there and immediately notified them about Charlie, his swimming prowess and his not understanding that you just can't swim out where the dolphins are.

The lifeguards were calm and observant. After Charlie responded to neither whistles nor parental entreaties to turn back (like the latter would work!), one of the lifeguards went out into the waves with a surfboard. Jim was in the water watching Charlie who had freed himself of his boogie board and was enjoying a swim in the surf.

Yes, enjoying. The whole problem is that Charlie is a super swimmer. He can swim with the dolphins; I'm sure he must think we were crazy to be yelling at him to come back -- but come back he had to.

The lifeguard had swam out to where Charlie was in no time. Charlie got right on his board and calmly rode in, with a last-minute dunking of himself under a wave. Then he stood smiling on the sand with me while Jim thanked the lifeguards, talked to people on the beach -- nothing like witnessing a surf rescue, even if the rescuee wasn't thinking he needed any rescuing -- and retrieved Charlie's boogie board, which had been washed quite a bit further down the beach.

Needless to say, it'll be only swimming with lifeguards for Charlie. Maybe I'm overly optimistic, but I do think he'll understand someday about not swimming out so far. For the past few years, we've struggled to teach him to "swim between the flags" and, as Jim pointed out, he had indeed done so on yesterday's swim.

Later at home Charlie was querulous, calling for Barney restlessly and not sleeping till after 2am (he is still awake as I'm writing this).[It's 3.30am now and he's still awake.] The beach is a place that Charlie has always felt strongly about and after such an adventure, of course lag would set in. The first blog post I ever wrote was about Charlie swimming: Those days of worrying about him standing too long on the diving board before jumping in have certainly evolved into something on quite a different scale.

There go the swimming lessons

I just spoke to the director of the swim program through which Charlie has been taking lessons. They don't feel equiped -- as I noted, they should not have felt they needed to be, as they are not a swim program for autistic children -- to teach Charlie, and certainly not handle his behaviors. So yesterday's lesson was Charlie's last.

When the teacher told him not to "jump in the pool" at Wednesday's lesson, Charlie -- maybe from thymic distress? maybe because of just hearing the word "don't"? -- grabbed at her and then banged his head on the pool rail. And then it was a difficult moment of running out of the pool area; grabbing onto the really nice man who knows Charlie because he's a swim instructor at Charlie's school and works at the pool in the evenings; sitting crying and moaning on a gym mat I found and threw on the ground. Charlie sat there for five minutes and then, sniffling, got into the pool with the teacher. He didn't swim at all, just moved back and forth in the water; he cheered up a little. 

I had a feeling as we left, after observing things, that we might not last much longer in this swim program. Had the director not called me, I was planning to write to them and let them know, if they didn't feel that their program was appropriate for Charlie -- again, it's not a program for kids with disabilities -- we understand.

We're glad Charlie got what he did out of the program. I've gained some more insights about the challenges of having him taught by those who don't have the background and familiarity with autistic kids and with teeagers and adults in particular. I feel good that Charlie did what he could and that the program director could speak to me about their concerns. 

Aside from issues of a behavioral sort, one thing that I suspect can be challenging is the rate and way that Charlie learns. He had some great moments of swimming all over the pool, showing how he can swim on his back, kick and use his arms. But Charlie has always been something more than inconsistent in his learning: One day, BAM! He'll do everything you ask and more. Then, POUF, and he seems disinclined to do anything and some of those danged "behaviors" crop up. Perhaps there was the feeling that they "couldn't teach him" because they didn't seem him "progressing" in some ways, whereas we knew he was doing something good by just managing in the lessons and trying to follow the teacher's instructions.

With us, it'll always be about not perfection, but progress.

Post that didn't get posted

Charlie's late night sleep on Tuesday (past 1.30am) caught up with him just around the time his swimming lesson started. Not much swimming was done but we left the pool in good order.

A Bit of a Waterlogged Post

It was all smiles for the most part at Charlie's second swimming lesson, in happy contrast to the first lesson and to his school day. Again he was wracked with anxiety, wanting to 'pack up' his things and go home from early in the morning.

I've been wondering if Charlie is having some kind of separation anxiety, for some reason, such as his being in his last few months with his current teacher and classroom staff? Or maybe this is some kind of lag following my being in Greece for a week and a half in March?

Charlie really showed off his stuff in the water on Wednesday evening. He kicked up foam, he propelled himself towards the deep end, he swam on his back. He did a great job following his instructor's directions as much as he could to do things like putting his face in the water and push off from the wall; I could see how he was puzzled, but trying to imitate her motions. He got a little upset at having to get out and into the water a few times, and then was smiling as he exited the pool with quick 'bye' 's.

And he was the king of cool when, driving back from Jersey City in the pouring rain---it was a bit of a trip to go there for some Vietnamese food, but Jim was working late, we had time to fill, and Charlie had had a super lesson---anyways, as we were heading home with good-smelling items in our car, something seemed to fall off? (I know that sounds odd! it was kind of hard to see) one of the arches of the Pulaski Skyway and affix itself to the tops of the white car's windshield wipers, so that the left one was broken and possibly wrenched off. So that, we had to drive home on two highways with only a windshield wiper on the passenger side and rain, rain, rain, and Charlie (tired by now) clamoring to go home.

I wouldn't say it was a fun or funny situation (this is what the Skyway looks like; it has two lanes of fast-moving traffic going both ways, and only a narrow concrete divider in between, and no shoulder). I knew that, a few years ago, I would have done the pathetic thing of frantically calling Jim and saying some version of what do I do?.

Last night, I just drove us home (eyes very steady on the road through the raindrops, mind you).

We got home in good order and Jim made it back by 10pm, too, and told me he'd take the car in to get the wiper fixed. Charlie had been in his room and ran down on hearing Jim return. After pacing around, sampling some watermelon, and looking disconsolate when we told him there would be no lemonade run tonight (it was around 11pm), Charlie settled himself on the big black couch and said 'yes' when I asked if he'd like his blanket. 

Yes, we are big on togetherness be there mysterious falling objects or storm, wet weather, on off days, bad days, good days, and everything inbetween. 

In Which We Return to the Pool

Yesterday for the first time in over a month I had a day to myself at home so, after dropping off Charlie at school (on time!  he knew he was going to go swimming and was up at 5am, and put his own swimsuit on), and after housework of a vacuuming/dusting/laundry sort, it occurred to me to look over the numerous flyers that come home with Charlie's communication book and so did I find a small brochure about swimming lessons.

I checked out the website  and then got on the phone and (with a little credit card action), had Charlie scheduled for a 6pm swimming lesson.

Charlie last had swimming lessons about 6 years ago in the indoor pool in our town. Those were the days when I used to take him swimming almost every night of the week at the Family Swim time. His teacher was a friendly young woman, Mamie, who had no background in working with autistic kids, but was able to teach Charlie to blow bubbles, kick, bob in the water, and even the beginnings of diving. Teaching Charlie strokes like freestyle and the backstroke proved harder as, by then, he had figured out to do a very fast doggie paddle. Gradually we dropped the lessons and continued to swim at various pools. Then our pool time slacked off as Charlie and I found ourselves relegated to rather deep wading pools, as the big pool time was all for swim team practice and adult lap swimmers.

The director of the swim lesson program said he had taught some autistic children before and noted that Charlie's instructor is a social worker in a tough urban school district around here. Plus, the pool Charlie would be taking his lessons at is the very pool that is attached to his school. Some years ago, the YMCA we belonged to rented the pool and Charlie and I had some very fun evening swims, marred just a bit when the YMCA staff glared at me for banging on the vending machine when Charlie's package of longed-for Swedish fish got stuck.

Last night, Charlie eagerly ran into the aquatic center just before 6pm. We were greeted by a man who teaches swimming lessons and lifeguards for Charlie and his classmates in the morning! As it turned out, he was integral to Charlie's first swim lesson being successful.

The lesson got off to an inauspicious start. Charlie may have had a whole idea and narrative in his head that, as we were going to the pool in the evening, it would be the old routine of him and me swimming. But I had not brought a swimsuit (deliberately) and Charlie was directed to get in at a part of the pool that, as the lifeguard pointed out, he never does.

Trying to grasp all of these disruptions, Charlie (who had changed into his suit with alacrity and carried out the swim bag by himself) stood at the pool's edge and cried.  And cried, and cried.

The director and the lifeguard quietly appeared, the latter standing by and not saying anything at first. Then he whispered a few things to the director and I listened. The lifeguard mentioned about going slow and using a kickboard or foam barbell to get Charlie started and the instructor (who had the kind of unflappable demeanor that is what I try to achieve when Charlie is in distress) immediately did so. She was great about taking my suggestion of keeping language minimal and just let Charlie stand and get used to things. Even though he kept crying and saying phrases that portend being really upset like 'stop it' and 'Barney!', he still followed the instructor's directions.

It took most of the lesson, and the lifeguard remained standing by, watching, but Charlie continued to follow instructions and even to duck under the water a few times. He got out as directed, got dressed, said his good byes, and home we went, to wait for Jim to return from teaching (which did not happen till past midnight---Charlie insisted on waiting up and fell asleep on the couch).

As Charlie and I were driving up to his school and the pool for his lesson, I had been noting to myself that him swimming was not the main point. Just him assenting to go for the lesson---something we have not done in such a long time---and going into the pool, changing, and such would be enough. For all that Charlie loves swimming and the water, he isn't necessarily and always thrilled to swim and be in the water, especially when someone else (i.e., his mother) is insisting he do so. As I reminded myself for the upteenth time, so much about doing things with Charlie is not about achieving whatever skill or task is being presented, but just about getting through the experience, preferably in one piece.

Frankly, it's just nice to be trying to do any kind of lesson with Charlie. We used to have a jam-packed schedule, with afterschool ABA, speech therapy, OT, gym class, swimming; opportunities and classes have dwindled as Charlie has gotten older.  There are classes and programs out there, but more than a few specify children with 'high-functioning autism' and the people on the other end of the phone get that nervous tone in their voices when I describe Charlie's, what can I call, it behavior profile. 

We'll see how he feels about next week's lessons. Fortunately, he is scheduled for lessons through June, so we've got a lot of good chances.

To Swim or Not to Swim

Charlie's active life continues: he went swimming yesterday morning at school and, as his teacher wrote, spent the whole time in the deep end.

There is indeed a pool at his school or, actually there are two pools, a 4 to 4 1/2 feet deep one and a huge one that must be 8 or 9 feet in the deep end. We once belonged to a YMCA that rented the school's pools and Charlie and I had a lot of fun swimming in the big one: So much water!

For a time, I tried to get Charlie to swim laps with me at a pool at the main YMCA facility. Open swim hours were very limited during the week due to swim practice and lessons and I often tried to snag us a lane in the lap pool. It was ok for Charlie to swim if accompanied by an adult, but (as we were routinely reminded) he had to swim.

'Swim' might seem a word with a quite obvious and definite meaning. I have a feeling that, for Charlie, the meaning is more 'be in the water wearing your swimsuit and do as you will.'

Charlie having long been a real fish, moving around in the water has (once he figured out how to float and propel himself through the water) long been second nature to him. (I am trying not to say 'swimming,' deliberately.) Charlie is now a very good swimmer, going headfirst down several feet into the deep end with no problem and, truly, great joy and delight. But he is so good, and so at ease in the water, that he does pretty much what feels natural to him. So long as he can stand, he does, and then when the bottom of the pool gets too deep, he just starts paddling and kicking and floating..

In other words, it proved difficult to have Charlie swim laps as he only swam when his feet did not touch the bottom. Why, indeed, swim, when you can walk?

Soon as his feet no longer felt the cement bottom, Charlie was up and floating, the transition mellifluous. While I tend to look at the water level to determine when I start to swim, I suspect Charlie discerns this by feel alone (he is sensitive to so much and in other ways than with his eyes---Wednesday morning had set out a new pair of black suede slip-on shoes and it took him a couple of minutes to stare at them, and to slide his feet in and out, out and in, and to just stand and stomp a little to adjust to the newness).

As a result, he and I were not able to swim in the lap pool as he was not, as pointed out by the other triathlete-training-swimmers, 'swimming.' Charlie would have been fine if he could have swam back and forth in the deep end, but that is not a likely set-up in most indoor pools, at least during the hours that he and I tended to go to the pool (late afternoon and evenings). And so our pool time dwindled out.

We weren't sure how much Charlie would be able to swim at school when he started there (almost a year ago). The schedule seems to be the kids get to swim for three weeks in a row, every three weeks (other schools for kids on the spectrum use the pool in the alternate weeks). So he gets to swim next week, and then has a break for three more weeks.

I think I am at least going to ask the school about some way for Charlie to swim at other times, as an option besides walking around the school to help him use all his energy and pre-address some 'behaviors.'

Maybe someone else can work on teaching him to swim laps.

Or maybe he can just swim and enjoy the water---nothing against that, no?

18 Miles On the Bikes At the Beach

I can't remember the last time that we, who are very much a 'beachy' family, went to the beach.  (It was a couple of weeks ago at the end of August; good thing I write this blog so I can just look it up, right?)

We got so into traveling to trails and other places to ride bikes this past summer that we more often found ourselves choosing not to go to the beach. Plus the tendency for there to be lots of traffic (even on the back roads) to get 'down the Shore' in the summer curbed our enthusiasm. Charlie himself had seemed to get into a rut about our beach visits sometime during July so that, even though he always likes being at the beach, he almost seemed to treat going as something he had to do--- a 'job,' Jim remarked---and not to treat it with the vivid joy he so often has. Since we started to make those trips last winter (the off off-season for beachgoing), we've started to think of going to the beach as a year-round activity, rather than one strictly for summer. In many ways, the beach is at its nicest---no crowds, beautiful light, not scorching hot, water still warm---in September and October, as Jim, who was spending a sabbatical there 18 years ago, can attest.

Charlie said a hesitant 'yes' when Jim mentioned the ocean Sunday morning. They did a morning bike ride around the neighborhood, then we loaded up the car with beach bag and bikes and got to the ocean in something like an hour and ten minutes.

Hallelujah for the off-season, oh yes.

Charlie wasted no time getting his boogie board and running out to the beach. Jim and I stood on the sand and directed him with a few words and lot of hand signals and elaborate pointing to stay clear of the rock jetties, and he was very amenable. He got in at least one fairly long ride on his board and went under a couple of waves, and then was quite happy to run around on the sand in and out of the waves' edge (it was nearing high tide), somewhat like he used to when he was little and was simply entranced by the movement of the water and couldn't take his eyes off of it (or himself out of it).

After swimming, we got a late-ish sushi lunch and then.

And then.

Charlie and Jim biked from one end of the beach to the other.  That's around 18 miles.

The wind was somewhat at their backs and Jim moved them around here and there to better avoid any traffic. I drove up to our pre-determined meeting point and found a spot with a lovely view of the water, the sun coming in over people fishing and boats going back and forth. Jim texted me when, after 1 hour and 40 minutes---meaning they did something under a 5:30 minute mile the whole way---their arrival was imminent and reminded me that I had to make a really big deal of this Charlie-triumph. You can be sure there was clapping and cheering and, oh, maybe even a little victory dancing (by yours truly--I believe in showing my enthusiasm).

And for once, I think I caught Charlie's feelings about the great matter of his achievement on camera, above.

The End of the Trail

Out on the bike trail in Jersey horse country (as in, where people have properties with super tasteful and extra large McMansions + an equally tasteful barn for the horse(s) ), there were no dogs.

And the weather was so lovely, high 70s, not humid, with a steady, strong wind (courtesy of the now 100-miles-or-some-such-out-to-see Hurricane Earl?). The sun came in and out of a sky with photo-opt-worthy clouds.

Conditions, that is, were excellent for Jim and Charlie to make it to the end of the trail. And they did!

All 24 miles of it, 12 out and back.

Charlie was especially motoring on the ride back, which was into the wind. As Jim texted me, 'He loves resistance'----just as, many a summer ago when Charlie and I went to the town pool (the one he refuses to step foot in now) every afternoon, he loved nothing better than to sink down to the bottom in the deep end, and feel the water's pressure upon him.

Will he come to shrink from riding his bike as he now does to go to the pool?

I never like to predict the future about Charlie; that's a very dangerous business. But it is not so much that Charlie does not like the water---he has been eager to get back to the ocean; we've been waiting till said Hurricane passes to go to the beach, as swimmers have not been able to go in past their ankles---as that, I think Charlie simply outgrew the pool. No matter how many people are in the ocean, the pressure he feels when a wave breaks over him is the same. Plus, a lot of the kids his age at the pool are primarily engaged in checking out the opposite sex, checking how they look in the swimsuits, and being otherwise social, and Charlie stands out because he is not (understatement) inclined to do any of that.

And (again, with all due hesitance to say too much about what might-could happen), bike riding seems to be an activity that is growing with Charlie. There's no limit to how far he can ride his bike. Jim has been very willing (and fit) to go on these long, and longer, bike rides, and over increasingly serious terrain. Good thing they both have mountain bikes.

After spending much of the latter part of Friday sleeping, Charlie woke around 7am on Saturday. We could hear him chattering, and then we didn't hear him, as he'd gone back to sleep. He ended up sleeping until noon. Jim noted to me later that this was all good preparation for the 24 miles on the trail (their longest yet) plus the extra 12 he did later on in the evening on his and Jim's home bike riding route. Too, after a couple of really hot 'n' humid days (not to mention a really hot summer), during which a great deal of bike riding over a great many miles has occurred, it seems likely that Charlie needs a lot of rest.

Or maybe he's started on another growth start.

In which case, we'll have to raise the seat on his bike----or get him a bigger one!

 

No Need To Pass the Kleenex

Monday we (or at least two-thirds of our tight team o' three) were on the water:

and in the water:

We are very lucky to have a friend down at the beach who is letting us leave our kayak in his yard. Our kayak is a bit on the bulky side and it's not so easy to haul it down and up the Garden State Parkway. There was a constant wind so the water was choppy and, Charlie still not being very handy with the paddle, Jim had to work hard to keep them moving (in the direction that Jim wanted to go, that is). Any way the water went, they had a tremendous time and since our friend lives right by the water, expect more reports of Jim and Charlie 'at sea.'

Afterwards (but of course!) we went swimming at the beach. The ocean was again just to Charlie's liking, with rough waves that pulled up in a big trough and then piled foam and water onto you. Charlie is tall and strong enough that he can stand up to a lot of the waves, or dive directly into them if he so chooses. He swam his way, headfirst, into three straight on (I jumped under).

Charlie's gotten, as you can see from the photos, leaner, rangier. At a neurologist's visit yesterday morning, the nurse observed this fact and then said---recalling our last conversation from our last appointment back in June---'all those 3-mile walks, right?' All those, I noted (Jim and Charlie were waiting in the big atrium of the building the doctor's office is in----not good for Charlie, or for anyone, to sit around in a small exam room while his parents and medical professionals talk about him). I also mentioned Jim's and Charlie's latest 20 and 30 miles/day of bike riding. The neurologist appeared and, after going over the test results from all the blood work Charlie had done back in July----everything is normal and Charlie doesn't have any genetic disorders that might account for some things, like his history of SIBs---he was very interested in hearing about Charlie and his bike-riding.

So after talking test results and a few plans for future attempts for procedures like drawing blood (the neurologist mentioned that his office---which has a behaviorist on staff---and some other agencies might start offering some training/programming to help autistic kids with things like getting their blood drawn), we talked bikes. About possibly biking with a bike club, bike trails, and more. I assured the doctor, at our next visit, Jim is going to have to talk to him, as he is Mr. Taught Charlie To Ride On Two Wheels and Not Only On Paths Parks and Parking Lots But Also On Local Streets in Traffic. With Cars.

I couldn't help interjecting once (or maybe twice or thrice) about how different everything was last summer. We went to see the neurologist (he is about an hour and 40 minutes away from where we live) a couple of times in the summer of 2009. Charlie got major upset in the car almost every ride, coming and going. He threw himself at the psychiatric nurse at one moment after which I found myself in a neighboring exam room with her shoving a box of Kleenex my way as we talked about everything (her late daughter was, as I've mentioned, developmentally disabled), and as Jim sat in a separate room with a weepy Charlie. On another visit, Charlie went completely to pieces in the parking lot.

No chance we would have made any post-neuro beach trips to kayak, swim, visit with friends (and they had a dog!---though Charlie was very wary of Buster until his owner put him on a leash).

I just want to say, with kids like Charlie, there's always another chance.