on the road with our son Charlie in Autismland
I know I've been saying we are all coughing away. We are, but somehow we seem unable to stay away from our usual activities, i.e., bike riding.
And so, after sleeping in, Jim and Charlie had a 49-mile weekend, with an 18-mile ride at the beach on Sunday followed by a 6-miler at home, after Saturday's 21 miles.
Leading us to reflect on how tough and enduring our boy is.
We went down to the beach where Charlie and Jim did 18 good miles.
On the way home, Charlie started and suddenly grabbed Jim's arm then sat back in his seat and we continued up the Garden State Parkway quietly. Charlie did ask for a walk and that was the first thing we three did after getting home.
I think it was July or sometime in August that we last went to the beach. Whether because the waves were not as he wanted or the crowds bothered him or he was vexed that he could not swim as far as he wanted, Charlie got so upset that we had to pull the car over on the shoulder of the Garden State Parkway and things were not pretty.
After that, Jim and I agreed it just wasn't worth it. What was supposed to be a fun family outing had become an all-out stress-filled experience from start to finish, including the time at the beach itself. Afterwards, Charlie himself did not ask to return to the beach all summer and I'm not sure how much he missed it.
With snow, slush and ice on the ground here in north-central New Jersey after the Saturday snowstorm, we decided to venture back down to the beach. Jim surmised there probably wouldn't be any snow by the ocean.
He was right. Charlie smiled some as drove towards the beach but was a bit tentative. He got right out of the car, put on his biking gear and he and Jim pedaled off without further ado. I passed them and waved as I drove 18 miles south; they rode up 90 minutes later, just as the sun was coming up. 'We could smell the ocean all the way!' Jim enthused.
Well, if you know Jim, he always enthuses about the ocean and the beach and this beach in particular, but he had an extra reason to do so Sunday. He and Charlie had had a terrific ride with a strong wind at their backs. As it is the off-season, there was no traffic and they had the road to themselves. We put the bikes and gear away quickly and Charlie proceeded to eat the box of crackers I had concealed in my backpack. We stopped at McDonalds afterwards and only towards the last stage of the ride home could we see Charlie getting antsy. He wanted more to eat after we were home and then seemed uneasy and then went straight to bed and fell asleep at 7pm.
He is still getting over that wretched stomach illness and 18 miles is, by any stretch of the imagine, a good workout. We anticipated that being back at the ocean would be both a treat and also the source of worries, sadness, mixed feelings. Charlie had known we were going but we had not make a big deal about it -- no social story or some such -- as we figured that thinking about a beach trip in advance meant that Charlie would feel compelled to get the boogie board and wear his swim suit and then he'd want to get in the water.
And, Saturday night, he had stayed up past midnight, vexed about the staples. I told him they would come out on Monday. Charlie sat on his bed and looked woebegone.
Hopefully the beach trip was a distraction in a good way. Certainly it was a beauteous thing to be back beside the ocean. Self-imposed exile from a place you love is sometimes necessary. We shall see if semi-regular trips back might be in the offing.
It's blurry, but can your see that Charlie is smiling in this photo?
He woke up at midnight on Monday night.
And he went back to bed.
And he stayed in bed.
And slept until 5am.
Smiling onto the bus and a great day at school.
After a bike ride (it was almost 50 degrees here, great for bike riding in the almost-winter, bad as it seems more signs of global warning), Charlie into the house and said 'Gong Gong Po Po.' Yes, my parents arrive tomorrow -- which is today, Wednesday -- for the holidays. This usually means a bout of grandparent anxiety, but maybe that had something to do with behavior storms last week.
Having slept so much the night before, Charlie had a harder time going to sleep on Tuesday. He and I went for a walk, he ran around the house, used his iPad in his room, ran more around the house, came downstairs.
I stopped into his room to see how much of a charge his iPad battery had and saw that he had put a favorite photo on the iPad screen. In it, Charlie is wearing an orange t-shirt and hopping out of his bed, on which are placed Barney and Alphabert, in a wonderful ocean front beach house where we rented a place for two summers before it was torn down to make way for mega-beach-house monstrosity.
No wonder Charlie had been playing a bit of the Beach Boys earlier in the evening.
The waves at the beach were roiling with foam and a current Sunday morning and we three had a good swim. But I don't think it was enough to suit Charlie's Platonic ideal of the ocean, as he got extremely upset in the car on the way home. We also think he was expressing his feelings about us not renting the beach house we did for five straight years. We park very near it when we go to the beach and Charlie seemed all right with walking by it earlier this summer, but clearly not now.
We had gone at low tide, but the waves were very strong and Jim had to insist to Charlie that he couldn't go out as far as the surfers.
We're thinking a bit of a break from the ocean would be the best thing. I know Charlie will insist on going, especially as he's off from school as of Wednesday. But perhaps he'll ultimately be relieved.
Lately something just isn't measuring up for him at the ocean. I suspect he's got a vision of it all being 'just like it was' when he was little and jumped for joy on the sand to see the waves. And then we go and it's all different now, with Charlie now grown so big but still needed more supervision than kids his age. He can switch back and forth from the Wiggles to John Coltrane and the Byrds on his iPad, but it's turning out to be far harder to navigate the beach as Charlie grows up -- not a surprise, really, considering how much he's always love loved it.
By which I mean, Charlie has an Idea of how things or people or situation are supposed to be and he accepts no imitations, representations or substitutes.
We do try to teach him to be flexible and not, for instance, only eat McDonalds French fries. (He does not, though, eat crinkle-cut fries -- that means they're not his ideal image of 'fries,' right?)
The idea of the beach in Charlie's head was crashing, foamy, powerful waves, from the time he woke at 4.45am on Saturday, through waiting terribly patiently in the house and then in the car in the driveway, and then in the car on the Garden State Parkway as we crawled along with many other residents of New York, Connecticut, Florida, Quebec and New Jersey. Although he smiled and splashed and went under the water at the beach when we finally got there, he held his body very stiff most of the time. Unlike our previous visits, the waves were placid and gentle, without any foam and dash and roar -- fine for Jim and me to swim around, no fun for Charlie who likes his ocean wilder.
He fell asleep as we drove home and refused to get out of the car once it was parked. He pushed his iPad towards me as it was slow loading videos. My suggestion that he come inside led to him grabbing the iPad back, making a very unhappy sound, and banging his head.
We got him out of the car and, after some heavy duty stomping and screams which signal a stomachache, the whole matter defused and Charlie sat on the black couch and was disconsolate, then cried for his bike. He smiled a little as he pedalled off after Jim, with a glance over his shoulder at me on our porch.
The beauty of the beach -- why it beats a swimming pool any day -- is that it's always changing, and those changes do teach Charlie that such is the way of the world. That said, we're always trying to take a little of the bite off reality, harsh as it can be, and reach with Charlie for that Ideal; for the perfect wave and beach day.
At 5am Charlie got up and told us: 'Yes. Yes. Yes.'
I had a feeling he didn't mean a repeat of Saturday, rides in Jersey horse country and all over our neighborhood and all.
Charlie wanted to see the ocean.
So we drove down at 8.45 am in less than 90 minutes and encountered a beach at low tide.
We all swam.
Low tide doesn't mean little waves -- the ones yesterday curled over and smacked down fast. Perfect for Charlie to get in some good foamy boogie-board rides and champion body-surfing.
Then we went home and Jim and Charlie did their daily round of bike rides.
It being a weekend, Charlie's internal sense of the order of things called again for rides.
Jim enjoyed a good swing, too.
With the walk-runs Charlie and I did at 5.30 am and 7.30pm on top of the swimming and biking, Sunday indeed qualified as a family triathlon day.
7.30am: Charlie up, rest of the household shortly thereafter.
Around 9am: Heading down the Garden State Parkway in two cars.
10.20am: Beach!
10.30am: Kicking on the boogie board into the waves; diving under waves.
10.50am: Low tide.
11am: More boogie-boarding.
11.20am: Running on the beach and calling for sushi as rows of Jersey girls stretch out a-tanning nearby.
12.30pm: Back home up the Parkway for two bike rides ('We did five since yesterday!' quoth Jim); another round of rides at the local amusement park (big step: Charlie left his green sweatshirt armor at home); run-walk with insects and constellations at 9pm; calling 'bedtime' just before he and I crossed a swampy field; listening to the Byrds Greatest Hits till asleep.
We sang 'Turn, Turn, Turn' at my sixth grade graduation: To everything, there is a season.
Simplex elegans.
Sometimes the solution (well, the solution of the moment) is simply a simple one.
It occurred to Jim last week that it would probably make the most sense for Charlie to swim at low tide, when the waves are not as strong or high and there's not as much of an undertow. After consulting a tidal chart, he found that low tide would peak at about 1.50pm Saturday.
So off we went in the car around 10.45am. It only takes us about an hour and 20 minutes to get to the beach, but it's now definitely the season, plus this is a holiday weekend with July 4th on Monday. So the Garden State Parkway was packed, though traffic did inch along (so it was not a parkway parking lot). In total, it took us about 3 hours, with Charlie occasionally reminding us "Ocean. Ocean. Ocean" from the back seat.
When we finally got there, Charlie had one grand old time.
Charlie swam just as he loves to, ducking under waves, floating on his back, body-surfing after a good bout of boogie-boarding. Jim was right near by and even farther out then Charlie.
As we didn't have to worry about calling either the lifeguard or 911, we actually got to enjoy watching Charlie swim. Jim's been taking him in the waves since Charlie was a baby and yesterday Charlie displayed every skill and trick. He also showed a lot of natural ease handling his boogie board, floating around lying on it on his stomach, just like a surfer waiting for the right wave.
Afterwards he wanted to ride the ferris wheel that was the first one he ever rode (and that Jim once carried him, screaming, kicking and wailing away from). Unfortunately, the rides didn't open till 6pm and it was just past 4. At first, Charlie stood despondent beneath the giant wheel and we got prepared to wait 2 hours in the hot sun. Then Charlie said 'white car' and walked briskly off, and asked to get ice cream and, as we drove back home (far faster than in the morning) up the Parkway, a bike ride.
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.
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