And so, on the final night of summer vacation 2008, what did Charlie say but…..

“No school.”

Yes, having made it clear since school ended back in August that he’d rather be in school, the night before the big First Day, Charlie got opening day jitters.

I waved his lunchbox, packed with paper-wrapped chicken (courtesy of PoPo), rice, watermelon, a bagel, and a Capri Sun. “No lunchbox.” “The schoolbus is coming tomorrow,” Jim said cheerily. “No schoolbus.”

“Ok, no schoolbus,” we said. “No schoolbus,” said Charlie and “no school” (just to remind us). “Yeah, no school,” I said with a shrug. “No school,” Charlie repeated, eyes wide and face set. Then I mentioned the speech therapist (who Charlie’s had for over 2 years, ever since he started in our school district), and the OT, and the adapted phys ed teacher, and Charlie’s teacher, and some of the aides (I was a little more careful here, as no one seems to know which aide will be where until the last minute). Charlie repeated their names after me, with no no’s.

Based on this, and what he’s been saying all summer, I do think Charlie will ultimately be glad to be back at school. But then there’s that nervous twinge at the prospect of something new, at a change, at a return to order and to us calling him to get out of bed bright and early (and since Charlie is starting middle school, his bus will be coming an hour earlier). Looking back over the summer, Charlie was not happy initially to be at the beach house, and then decidedly less than thrilled to leave it. And he accommodated himself extremely well to being at the beach and loving it, and—while missing the sand and salt water waves so much it must hurt—Charlie found it wasn’t so bad to be home either. And it’s expressing those contradictory, ambivalent, and in-between feelings—something between yes and no—that’s a challenge of words and of something more.

Plus, on Sunday morning, we went to Surfers Healing at Belmar on the Jersey Shore. We’d heard of Surfers Healing a couple of years ago and been hesitant to participate, as the camps on the East Coast always seemed to fall just around the time Charlie was starting school, and for Charlie to be one day at the beach and the next at the school was too much too fast. So really, it was a huge bit of progress for us to be attending a surf camp, the day before Charlie went back to school.

We had to get him up early after days of sleeping in (till 11, Saturday morning) and Charlie woke up smiling and repeating my “get up, get up!”. After Saturday’s heavy rainfall thanks to Hurricane Hanna, the sun shone brilliantly—–and the waves were high. Repeat that, high, and huge, and tall, and foaming, and straight up and down and not like they usually are on the Jersey Shore. Read the Surfers Healing website:

Special Note- We will be having the surfershealing camp in Belmar but if it is not safe we will not take kids surfing. Please plan on coming we will be having a huge beach party. Thanks.

At 10am, the beach was packed and it would only get more packed with families and umbrellas and beach chairs and beach towels and bags overflowing with swim shoes and suntan lotion and more towels. Charlie had no problems putting on a life vest, lay right down on the surfboard, and went out farther, and farther, and farther over the waves, a stone jetty nearby. We could see him, long legs bent at the knee and the surfer in a black wetsuit kneeling behind him, bobbing and easy in the water.

Quite a few more children, all smaller than Charlie, walked by (some were carried) and got on the boards and went out; a couple stood atop the boards as they came in, the surfer having pulled them up just as they were riding out from a wave. Charlie was out there the longest, saying (as we later learned) “bye” a number of times. Jim and I suspected, he was expressing a wish to just get in the water and do what he always does at the ocean: Swim.

It was a gorgeous day and something to be out there with so many families, and with so many people who shared Charlie’s and our love of being not only by the ocean, but in it. Not every family had been able to get a spot to surf and a lot of people had come simply to be at the beach and join in a beach party with games and music and food, and be part of the day and the sunshine after the storm.

At long last, we saw the surfer turn the board with Charlie on it towards the beach. I got out my camera; my dad was working the camcorder. The wave was big and then the surfer stood up, Charlie still lying on the board, head facing forward like a figurehead on a ship and then Charlie rolled over into the wave and the surfer looked down and had to look back and then went into the wave too.

He emerged with one hand holding onto Charlie who (as Jim and I glanced to each other) had done what came too naturally and gone where he may well have wanted to be the whole time, under and inside the ocean water.

Charlie smiled his way back to the sand, was applauded, removed his life jacket, got his trophy and went to slide his feet in the sand and find lunch. We’d mentioned that “he’s a really good swimmer” but I suspect the only way to fathom Charlie’s swimming ability is to see him in action. And really, what can I say, Charlie was doing it his way.

Back at home, after wonton soup and rice, I laid out Charlie’s gym clothes and the locks and keys for his lockers, and slipped his lunch box into its appointed place in the refrigerator. Charlie, who’s been wrapping his right hand in his shirt and using his left since the end of July (and the end of summer school), used his right hand to unscrew the toothpaste and then carefully brushed his teeth. I was standing beside him and a fast glance in the mirror clearly showed how many inches Charlie has over me, even as I saw and still felt the little 5-year-old, hair damp and eyes shining after a nice warm shower, learning his big head into my shoulder as I tightened my arm around him and adjusted my hip. When Charlie was younger, every night after his shower, I’d towel him off and pick him up and we’d look at our reflection in the mirror, Charlie and mom saying “who’s that?” Sometimes Charlie said some fragment of a word; sometimes he smiled and looked long and hard.

Sunday night I tucked Charlie in and pressed my cheek on his and dimmed the light; five minutes later, Charlie pattered out, grabbed the gym clothes and locks, and placed them near his pillow, and was soon asleep. His Leapster was under his arm.

No one does it like Charlie.

Yet another report of an autistic individual—Angel Brooke McKinnley, a 22 year old woman in Provo—-who is missing. There’s been numerous stories about autistic children and adults missing this summer, and Project Lifesaver has been mentioned a couple of times. A friend’s son has one of the Project Lifesaver devices and I was surprised at how big it is; it’s a lot of plastic strapped onto a small boy’s wrist. He’s okay wearing it but I don’t think Charlie would tolerate it at all and would probably try to get the device off his wrist, and not be too happy when he was not able to.

Impossible these days not to look at Charlie and think, big kid. Standing on the edge of the ocean, deeply tanned and with strong shoulders, he’s (as Jim likes to say) a long, tall, drink of water. I know he was just not so big last year, when I often noted that he was “a few inches shorter than me.”

That day when our child looks down at us: What kind of pride does a parent feel (a bit in awe, in my case). When you’re the parent of a disabled child, there’s twice as much the pride, but also something more of worry and a twinge. Another friend visited us at the beach on Monday and I found myself, for several minutes, holding her one-year-old baby. I felt especially aware of how small he was, and how easy it was to steady his weight on my hip and support him on my left arm. I knew Charlie had once been as small though he always had very long limbs and seemed to be wriggling and moving most of the time.

Needless to say, those days are long, long gone. My mom gave Charlie a sleeveless shirt which he has not wanted to wear (shirts must have sleeves, I guess) so I’ve been wearing it. He used to like to wear my shoes for fun but now they;re too small for his feet. Charlie’s every inch the adolescent and, being such, seeking his independence; testing limits and pushing at boundaries and wanting to do things himself, like swimming in the ocean. Charlie knows he’s supposed to swim between the two flags and nothing has been annoying, angering, him as much as when Jim or I remind him that he has to walk all the way over: We’re barging in on his space; we oughtn’t to to be holding his hand; he wants to do it all himself, and we have to be parents and remind him, rules are rules.

I recently read a book by the father of an autistic child; the authors notes that his son will always be the same age inside, that he’s  sort of like Peter Pan, a boy who never grows up. Charlie’s delays are clear and obvious, this summer on the beach, but far from being a toddler in an adolescent’s body, he’s an adolescent in an adolescent body. A couple of times, of late, there’s been crying “out of the blue,” there’s been mood swings, and I’ve thought back to my own adolescence, and stormy, up and down memories of emotions and feelings: Why does growing up have to be so rocky sometimes?

One thing about my now older, approaching teenagehood son. So far, it doesn’t seem like we’ll need (fingers crossed) a Project Lifesaver device. While younger, there were times when Charlie wandered off, into a neighbor’s yard to use their slide, and much panic ensued. He’s been pacing in the yard and driveway of the beach house, and seems not at all inclined to wander off; he seems to know he needs to stay close to home and wait for Jim and me.

Though I think I’ll always have my ears attuned for the sound of Charlie’s voice, and my eyes making sure I see his ever taller form close by.

Besides watching Charlie pick up his red boogie board and walk out into the waves, lie down on it and turn around to catch a wave—last year he hadn’t quite gotten the knack of this—-and the general benefits of being at the beach (and I say this as a person who, until knowing Jim, had zero desire to swim in the ocean), a “side benefit” of vacationing herer is that it makes it possible for us to be social and, in particular, to do something that we rarely/never do at home: Entertain guests.

Tuesday friends came with their son who’s Charlie’s age; Thursday another friend came with her two sons (and Charlie communicated his distress at their leaving wordlessly, and sadly). From Friday afternoon till Monday morning our friend from Philadelphia has been visiting (and kindly keeping us supplied with morning bagels and orange juice). Another friend stopped by late Sunday night and Charlie (he’s seen this friend once) was smiles on the couch, smiles slumping in the chair by the TV while the Phillies were on playing the Padres, and still smiles lying in his bed with several blankets and assorted items heaped around, as we grown-ups talked below.

During the “regular” year, when school is in session for all three of us, much as we’d like to have friends over and hold parties and open the door for guests, it’s really not easy. After a full week of getting everyone up and onto the bus or off to work or school with the appropriate items packed into different bags (and lunch in Charlie’s case), and then teaching and working, and getting Charlie to speech therapy and swimming and grocery stores and homework and practicing piano and cello and dust-busting our apartment and laundry and grading and, well, you get the picture—-on the weekends, we’re all just kind of relieved to do the proverbial “hanging.” But a beach house, now, this makes things simpler. There’s an obvious and very fun activity to do—getting out on the sand and in the waves—-seafood is automatically on the menu and somehow the background plash of ocean waves and the air, make entertaining at the beach not only possible, but part of the package.

And Charlie likes having guests, likes having other people around. It can be kind of hectic, chatting and pulling out plates and slicing tomatoes for salad, and always having one ear attuned to where Charlie is and what he is doing; I’m always ready to say “excuse me, I have to check on Charlie.”

Generally he’s been just pretty good and pleased, and glad to be among friends.

In the ocean this morning with Charlie, I noted a boy about his age looking more than a few times in our direction. Charlie’s a super swimmer, and clearly comfortable in the water, and still has to have someone out there with him. This morning it was me. The waves were perfect—big but soft and just a bit cold—and Charlie was vocalizing his excitement, though not in words. After the other boy had looked in out direction a few times, I smiled and said, “Charlie’s autistic.”

“Yes, my friend has a brother who has that,” said the boy. I asked how old he was; the boy said he was ten, same as himself, and that “all he does is play video games and beat people up.”

“My son doesn’t do either of those,” I said, quickly, and glancing around to see where Charlie was swimming off to. “I mean, a lot of kids like to play video games, but not the beating people up.”

The boy was in earnest and added, “He’s mainstreamed, too. He’s in fourth grade. They had to hold him back a year.”

At that point Charlie was clearly swimming beyond the lifeguard’s orange flag and I hurried off. The boy and another boy, both on boogie boards, floated several times near us and in and out wherever Charlie was going.

The beach is big and the waves themselves are loud. I’d say it’s a place where there’s room for everyone, “whatever” they are (on the first day, we realized that another family on the beach had an autistic son, an adult). There’s still rules—those orange flags to swim between, and not swimming near the jetties or near a fishing pole (Charlie attempted to do both this morning). One reason we like to vacation at the beach is because it is a place where Charlie can pretty much do what he likes a lot, get in a lot of exercise, not have to worry about waiting in lines for rides as we would at an amusement park. Being able to rent a house rather than a hotel room means there’s plenty of room for him to run around and stomp (and we have our own washing machine…….). Souvenir shopping and going to arcades aren’t of interest to Charlie, and the ocean and sand are pretty much the main attraction.

So, we try to seek out a place where Charlie can be himself, in public spaces too, and get ready to play the parent activist at certain moments when a boy taller than his mother who speaks partially in sounds rather than words attracts attention and can be considered disruptive. The August 13th Associated Press has an article about the disruptive behavior of autistic children striking a furor; some cases of autistic children—Adam Race; Alex Barton—being excluded are noted. Is there a limit to how much “understanding can be gained in grocery stores, churches or other public places”? If parents go out of their way to make accommodations and preparations when taking a special needs kid out in public, maybe these are first attempts to help a child learn to be in public places, and to seek the beginnings of understanding.

Maybe—at least they’re ways to get a conversation about autism going.

Yes, third day at the beach was the charm and on the fourth day, we were back in beach business, so to speak. As the afternoon wore on—when the sunlight was not as intense—Charlie stood at the edge of the water and deliberately, unhesitatingly, walked in and started swimming. Almost every day this past summer, he and I have gone swimming at the YMCA pool and while Charlie doesn’t exactly do full laps (he’ll be swimming across the pool, flipping onto his back, and then suddenly disappear under the water—he’s sinking down to the bottom)—he’s been getting some solid workouts. All that swimming showed as, Tuesday afternoon, Charlie headed into the waves and then went back and forth, forth and back, between the rock jetties, swimming on his stomach and back and sometimes dropping down literally beneath the waves. Several times.

Since last year’s summer at the beach, Jim and I have been worrying about Charlie swimming farther and farther out into the ocean; out to sea, literally. We’ve struggled and wondered how to teach Charlie to “swim between the flags,” the orange flags that the lifeguards stick into the sand to tell you where it’s ok to swim on the beach. The idea that there’s some invisible, but still existing line from each orange flag out into the ocean has been hard for Charlie to grasp: With no evident boundary, why should he stop swimming?

It is only the fourth day here, but Charlie seems, possibly and maybe, to be getting the concept. Or, he’s at least all right with following our instructions to go “this way” and “swim flag to flag” and “swim with people.” As he’s been nearing that invisible boundary, Charlie has sometimes been catching our eye, getting out of the water, walking on the sand over to the other flag, and going back in—-that was what he did on Tuesday afternoon and in deep and vigorous he swam.

As the photo suggests (if you can see it), Charlie did at times head out to sea (and, in that photo, on his back). Jim was out in the water with him and got him to turn around and I did some elaborate (and probably quite futile) elaborate hand, arm and body gesturing to direct Charlie which way to swim.

Charlie’d been quite excited the whole day, too, as friends (with a son his age) visited, and Charlie said, a couple of times over as we were waiting for them “friends today!” Our usual schedule is to go for a short swim in the morning and then a long one in the afternoon; Charlie got in an extra 1pm swim (as that was when our friends came) and a very late burger lunch (during which he showed great interested in my onion rings). Our friends gave Charlie a kite, and he examined its multicolored panels very seriously.

New things, different things, changes and new surroundings take some time to examine and then absorb: I’d say that Charlie’s been having (as he often has) a delayed reaction in the face of something new.

And well worth the delay.

Third time, or day’s, the charm?

Monday the sun shone, we got in two swims in the ocean, and Charlie seemed a bit more, and even much more, relaxed about being at the beach house. He tried the boogie board briefly and smiled when he shoved his feet far underneath the squishy wet sand. He didn’t seem too inclined to swim too far out and liked teasing the waves, running in up to just above is knees and getting right back up after a wave knocked him over.

Quite unlike himself, Charlie was minimally interested in eating. At dinner time, he asked for “white rice” and we ended up getting him a dish of jambalaya. Not exactly plain old white rice—red, with spices and peppers and sausage and chicken and shrimp—-Charlie dug right in and ate small bites. After ten minutes, he suddenly stopped and asked for the black car and Jim and I sealed up our dinners and we drove off. We had to stop at a CVS for miscellanea (forgot to bring a bottle of shampoo and needed garbage bags) and Charlie happily wandered the aisles. And then, cried out.

Jim went back to the car with Charlie and I paid for everything. For the rest of the evening, Charlie vacillated between seeming at ease, and being on edge. We watched more YouTube videos on my iPhone; he settled down with his blankets beside Jim watching the Pittsburgh Pirates (they won!) and then curled up into a rattan couch on the fenced-in porch as Jim worked on his computer. We got Charlie to walk up to his bed on the second floor and I tucked him in under the yellow blanket he’d brought from home. He told me good night, asked for a drink and I left a cup by his bedside, after he told me “bye, mom.” I could hear him rummaging and vocalizing, and then it was quiet.

When I went to check on Charlie, there was a tooth (a big one) set beside his pillow; beside a boy sleeping deeply in his beach house.

Two days at the beach and it’s turning out to be a bit different from our previous vacations.

We’ve gone to the same beach—the same spot on the Jersey Shore—since Charlie was a baby; for the past three years, to the exact same beach house. Jim used to vacation on this beach as a kid and I first came here soon after we’d met. I had never liked the beach until coming here and it’s been where Jim and I, and then Jim and Charlie and I, have vacationed nearly every year since the late 1990’s.

Ever since the first time he came here, Charlie’s been drawn to the water and the waves. Many years followed of Jim and me carrying him into the waves and holding Charlie while the water came in and out around him, and then of Jim piggybacking him into the waves. As he got older and learned to swim, Charlie’d sometimes jump off Jim’s back and swim off. About two summers ago, Charlie started to get the hang of riding a boogie-board and, last summer, he started to run in and out of the waves with the board strapped securely round his wrist; he even had his first surfing lesson.

I’d say it was when Charlie was about 7 years old that leaving the beach became close to unbearable for him. One year he put his favorite toys—a stuffed Barney doll and a toy computer, Alphabert—into a closet and told us “NO!” when we went back to look for then, and we realized that he was hoping that if he left his toys in that closet, we’d never have to leave. Another year, he spent the last three days screaming “No Gong Gong Po Po!” until he was hoarse. Charlie knew my parents (he calls them by their Cantonese names for maternal grandfather and grandmother) were visiting us after we returned from the beach and associated the thought of seeing them with the end of being at the beach.

So far, this year has been the opposite. Far from counting down the days till we left for the beach, Charlie made it clear, he’d rather be at school. Last year, he cried for an hour when we first pulled up to the beach house and then settled in and enjoyed himself, even through four straight days of rain. This year, Charlie’s said “home” over and over and been squinting a lot; late Sunday afternoon, he gathered all the bags I’d packed and heaped them in front of the door, along with his backpack and blankets. Jim and I have been feeling flummoxed as Charlie’s always been happy to be here, and to eat his favorite burgers ‘n’ fries in white take-out boxes, and enjoy life at the beach, and the open spaces of the beach house.

Granted, we’ve only been here for not even two days, and it rained and thunderstormed for most of Sunay, and Charlie’s been the most happiest, at ease, “smilingest,” when he’s been in the ocean. His swimming is as strong and graceful as ever, and he never looks to see a wave coming, always ducking under, or flinging himself into, the ocean water in perfect timing with the cresting of the wave. It’s something about the everything else of being here—-not home, not at school—that have been distressing Charlie. Perhaps there’s fear that if we’re not at home, maybe we won’t go back. Consequently, Charlie’s need for school and routine and order seems to be running at an all-time high.

Signs of a growing boy, already an adolescent?

Signs that, contrary what some say, a child like Charlie is not “the same always” inside, but growing up and in every way, and changing?

Charlie hasn’t asked for piggy-back rides. I think he knows, from earlier this summer when Jim injured his back, that those days are over.

So things change, of course. Charlie’s growing older, and so are Jim and I, and maybe we’ll have to rethink how we spend our summers. We’re “down the shore” here for just under two more weeks and it’s looking to be a different sort of vacation. I feel sad, but I know that Charlie’s growing up and, far from being a toddler trapped in the body of a much older boy, he’s a growing boy in all respects, growing and changing.

Now if I just change enough to catch up with him.

I’ve not been surprised that Charlie’s been calling for home and so uncertain about vacation, although it’s a very familiar vacation, in the same beach house that we’ve rented for a couple of years and at the same time of year, and with the same families renting houses on the same street. He likes his regular routine that centers around school, because he likes school, and packing up the car and going somewhere else may suggest to him that we’re not going back.

We went to a take-out place for dinner and Charlie insisted that we sit down instead of taking the food home. Every picnic table was filled and Charlie stood close by one table and then another while I beckoned him to stand with me. We went into the building; Jim was just getting our food. The tables were all still full and Charlie still wanted to sit at one, so we waited—-after a few minutes, Jim noticed a family standing up and I edged myself over.

As we sat down, I realized that there was another family—-two parents and their sons—at the other end of the table. Who knows but we were barging into their space. Charlie sat down and reached for his ketchup. Every other table was taken and more people were standing around with strollers and six packs. Charlie ate some and asked to get up and—unusual for him—only ate a few more bites of his burger after we were back at the beach house, with my coaxing.

It’s not easy asking for a place at a table—-hence the title of a collection of stories of growing up, of being different, Can I Sit with You?, edited by Shannon Des Roches Rosa (she blogs at Squidalicious) and Jennifer Byde Myers of into the woods, living deliberately).You can buy the book here and submit yours own writing for a second version here. From the mission statement:

Dealing with the other kids at school was complicated even if you didn’t have a label. For those of us who were socially awkward, culturally juxtaposed, same-sex attracted, gender-cocooned, income-challenged, “weird” sibling-saddled, differently abled, atypical looking, religiously isolated, on the autism spectrum, or who somehow just didn’t fit in, it could be brutal. Even though most of us eventually developed coping strategies, grew up, left school behind, and tried not to think about how much that time in our life sucked.

Until some of us starting having our own kids. And saw those kids start to flounder, saw them start fretting about how to fit in. Aiigh! What to do?

What to do is write and tell the story. I think. Jim and I have often thought that our own experiences of growing up and being different have truly helped us in raising Charlie and facing and identifying his challenges. I remember a friend whose son has Asperger’s telling me that, when he’d sit at a table in the school cafeteria, everyone else would get up and leave. What does that do to a growing child’s understanding of the world?

Saturday night, Charlie planted himself on a couch after eating a few bites of burger and carefully arranged the favorite things he’d brought with him nearby: Two copies of Goodnight Moon, his Leapster, his blue backpack with the photo bucket (he kept calling for his lunchbox; it’s at home in the fridge); two fleece blankets. He didn’t want to go up the stairs to his bed (the same one he’s slept in the three previous times we’ve been at this beach house); he took himself up with a cry and I followed with all of his stuff.

I found him curled up in the yellow fleece blanket and asking to see Wiggles videos. I recently got myself an iPhone and ran downstairs for it, and found Charlie several Wiggles videos—all the old favorites, “Hot Potato,” “Point Your Finger and Do the Twist,” and the one about riding in the big red car. At first I wondered if Charlie could see the videos on the small screen, but he was quite absorbed watching and I wished him good night with the promise that we’d watch more tomorrow.

And any day, sitting side by side, together.

Made it down to the beach house with the usual traffic and Charlie making it clear, he’d rather be somewhere else. I unloaded the car while Jim picked up two rental bikes, and Charlie came in to the beach house (this is the fourth year we’ve rented the same one), eventually.

Charlie used to get really upset when we left the beach and now I maybe he’s  transferring his worry about leaving a special place to the beginning of the trip.

Off to the beach while the lifeguards are still out.

So we come home from an hour swimming at the pool and Charlie says, “Carrots, lunchbox.” And after I give the “yeah, sure,” he opens a cabinet and takes out a Ziploc. As we have no carrots, I suggest grapes, and go to empty the laundry from the dryer.

When I come back to the kitchen, Charlie is zipping up his lunchbox and talking about the schoolbus and the names of his OT and some teachers, and then puts the lunchbox in his backpack after taking out the stuff he likes to have in the backpack but that he doesn’t take to school: The photo bucket, some photo albums, picture books, the Leapster, and one of my shirts. In goes the lunchbox and he finds his red homework folder and, grinning, puts it in.

“Good night!” Off to bed.

As you know, it’s the beginning still of August and Charlie has about a month of school-less days to go. He also has his annual beach vacation starting on Saturday: Will Charlie scream and cry for the first hour, two hours, three hours, plus of being at the beach? (He did this last year as we pulled up into the rented house’s driveway.) I know he’s trying to tell me about the confusion of too much fun and awful dread to leave the beach and so how can he possibly enjoy it? Whereas, you know what to expect at school.

Charlie’s been expressing his feelings about this by saying “no beach house” and “no ocean” and “no.”

But a big ol’ “yes” to school.

Kid’s got his heart in the right place.