Posted by: autismland | February 18, 2007

Gong Hay Fat Choy (#607)

One of my aunts sent me a Chinese New Year’s email in…….Chinese. I was able to read most of the words without a dictionary: I studied Mandarin when I was in college and Cantonese (which is the only language that my grandmother, Ngin-Ngin, speaks) for just a few months when I was 7 years old. (My sister and I did not want to go, and my parents acceded to us.)
Otw
“It would be great if Charlie could study Chinese,” I thought more than a few times when Charlie was a baby. I looked at the Chinese books on my shelves and looked forward to one day resuming my own study of Mandarin, together with Charlie.

Then came the past few years and speech therapy, verbal behavior, verbal imitation programs, oral-motor exercises with whistles and straws, sign langauge, PECS, the Language Master: Anything, everything, to teach Charlie to talk.

(The Chinese books have stayed on the shelf, and gotten rather dusty.)

Charlie was eating lunch while I printed out my aunt’s email and started to read it out loud.

“Xin de yi nian……” I read.

“Xin,” said Charlie.

“Woo de,” I read.

“Woo de,” said Charlie.

“Peng you.”

“Peng you.”

Charlie’s pronunciation perfectly echoed mine: When he says a new English word, he usually has to practice saying it for some time. Chinese is a tonal language in which you modulate the rising or falling of your voice and this, along with the particular sounds of vowels of consonants, determines the meaning of a word. Charlie instantly picked up on the “level” tone I used for “xin” (“new”) and the dip in my voice when I said “woo” (“I”).

“New year……my friend,” I translated. And started to count up to ten in Mandarin; each time, Charlie repeated each number with ease.

“Yi.”

“Yi.”

“Er.”

“Er.”

“San.”

“San.”

And so on up to 10 (shi).

I know that Charlie has first to work on his communication skills, on his English pronunciation and yet—-I was simply very struck at the ease with which he can say words in Chinese. Might a few lessons in a foreign language help his speech in general? Might I simply be confusing him? I have often figured out what Charlie is saying not so much from the vowels and consonants, as from the melody with which he pronounces a certain word, and he seems alike attuned to the tone and pitch of Jim’s and my voices.
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Almost too fittingly, it is Chinese New Year today, February 18th, the Year of the Pig: Gong Hay Fat Choy (“Best wishes and Congratulations. Have a prosperous and good year.”)

Gong Hay Fat Choy, woode peng you!: Charlie said those words, just like that, too.


Thanks to SaltSpring.com for the calligraphy.

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Posted by: autismland | February 16, 2007

The Meanings of Mom (#606)

“Mahm!”
Sideview
Charlie said Thursday night, lying on the couch with one hand under his head and the other pointed at his mouth and, more specifically, at his loose tooth. “Mahm, help.”

I have been many things to Charlie, but “dentist” is not on the list.

“Mahm.”

Charlie walked across the room, his eyes on me the whole way. “I want!” Pause, eyes still on me, lower lip pulled down to think. “Eat bread!”

(As I handed him the bread, I noticed two gaps on the bottom of his mouth—who knows where the teeth ended up…….)

“Mahm.”

Charlie turned back to fix that same gaze on me as he ran up the stairs. “Wait ten minutes for Mom to get ready,” I said.

“Mahm.”

“Mahm!”

Mahm.”

“You can get your socks on” (meaning that Charlie went to get his socks, shoes, coat, hat, and gloves, ran into the bathroom, ready to go pick up Jim at the train station).

“Mahm.”

Charlie touched my right arm after the waitress had set down a bowl of steaming brown noodles, his request a vestigial trace of last summer’s bout of food throwing due to (I think) anxiety. I placed one finger on his bowl as he dug in (and attempted chopsticks with my left hand—-and quickly reached for a fork).

“Mahm.”

Charlie was rifling through one of my books and had pulled out a post-it note I had used to mark a page. He crumbled the note and then held it out to me: “Giff!”

“Mahm. Mahm, Mahm, Mahm!”

10.45pm and Charlie was still rolling around in his bed. Jim went down to talk to him and called me down; Charlie was crouched on the floor looking under his bed. “Mahm, Mahm.”

I crouched down too and saw that his photo calendar had gotten stuck between the wall and the bed. I fished it out, and realized that I had forgotten to give Charlie his melatonin, and promptly did.

(Guess this mom had a few other things on her mind…….)

“Mom” means a little more than apple pie around here.

Posted by: autismland | February 16, 2007

A Good Story is Worth a Listen (#605)

For the first several minutes of story-telling at our town library tonight, Charlie hummed while sitting on his gray carpet rectangle. Not his loudest motor-revving-up almost-roars, deep down in his throat, but a kind of general buzz, like the sound of a fluorescent light.
Librarystory
One girl—-I think she was a sibling—kept turning around to stare a little (not out of annoyance, but out of puzzlement and even a bit of wonder). The parents and the librarian conscientiously ignored, or seemed to be ignoring, Charlie’s buzzing: One child was in the back with his mother who first tried to hold him in her lap; he stood and tapped the back wall, lay down on the carpet. Another child hopped up after sitting still and quiet and went to look closely at the large format book the librarian was reading, or at the box of musical instruments she produced. Charlie, after a bit of pacing over the rows of carpet squares, sat down as I requested in a whisper and stayed seated until asked to rise and “join in the marching band.”

I sat beside him, head cocked at his usual angle for listening and eyes slid off to the side. Charlie fingered the sticker name tag he had carefully read and picked up off the table, and ripped off his shirt as soon as he had applied it. He heard a snowman story; followed the librarian’s hand motions for different instruments (Charlie was a few beats behind and his movements minimal, but he was clearly watching and imitating all on his own; I had to watch the librarian attentively to get the movements right myself); heard another story about winter; stood and hummed a bit more as the other children chose musical instruments. (Charlie was the last to take one—a maraca.) When the librarian started marching in a circle and shaking her tambourine, the other children followed suit (some with parental direction); after first walking in the opposite direction in a smaller circle, Charlie got in a line. And he was no longer humming.

Just a few years ago, that humming would have been my only focus, my mind racing from redirecting strategy to redirecting strategy, all while thinking, “Charlie must act appropriately or……..” Or be stigmatized for strange and different and weird behavior? Or be asked not to return? Or be singled out as ruining the event?

All those worries—shades of catastrophic thinking—-were gone in me tonight. We were there at special needs kids’ story-telling and we were there with the presumption that Charlie being Charlie would be fine. And so I did not try to have Charlie sit for the first few minutes, but watched him running back and forth and stomping his feet out of time to “If you’re happy…..”, and humming. I sensed that Charlie was saying, he needed to acclimate himself to the room and the noises and the people in it and to the demands that accompany a visit to the library. Having been in conversation over the past several months with autistic adults, I have been trying to learn how to let Charlie be who he is—the way he is—in order for him to do what I would like him to do (sit and listen to a story).

“Aw done, done!” Charlie called out when the librarian led everyone in a closing rendition of “Twinkle Twinkles Little Star”—I concluded that he has had enough of that song by now (Charlie will be ten years old in exactly three months as of February 15th).

After the half-hour of story-telling, I would have liked to have gone with Charlie to the children’s section and have him choose a book. Charlie would have liked nothing more than to head for the black car and go home to eat dinner.

Guess which we did?

(Hint: It was the right way to be with Charlie.)

Posted by: autismland | February 14, 2007

Turn, Turn, Turn (#604)

I noticed the gap in the lower right front of Charlie’s mouth when he smiled this afternoon: A tooth (a canine, from the diagram the dentist had given us) was clearly not there. Jim and I tried to remember when we had last not seen that gap, and then I remembered that another student in Charlie’s class had lost a tooth (and missed a day at school): Charlie is due to lose a few more in the next few years and—-from the way he was pulling and poking at the lower left side of his mouth before going to bed tonight, in the next few days.
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And Charlie was clearly irked and unsettled by the strange feeling of a wriggling tooth in his mouth.

“Mahm,” he called to me as he lay on the couch. “Mahm. Mahm.” I walked over and Charlie looked up at me, his fingers wet and the tips pushing at his lower left lip. “Mahm. I want.”

No wonder, I thought to myself, Charlie had wanted to eat an entire box of frozen peas, for the cooling sensation in his mouth. No wonder he had not wanted to chew on the drumstick I had placed in his bowl at dinner.

I had been relieved when Charlie, on first waking up, stayed in his bed laughing and pulling blankets and pillows over himself, all grins as if he—like ye typical child—was giddy at the thought of a snow day NO SCHOOL!!!!!!!. On Tuesday night, while Jim and I were explaining that he would probably not have school, Charlie had insisted on seeing that I packed his lunch in his lunchbox and had then reeled off the names of his teachers. This morning, Charlie looked at the snow through his bedroom windows and the garage doors and ran up for breakfast—-it only after this happy, elated beginning that he cried out and curled into a ball on the couch under his blanket. We speculated that he was respondeing to the oddness of being at home with everybody on a Wednesday morning: Fun at first, but now he wanted the orderliness of school.

The three of us got into the black car and drove on almost-empty streets in the slush and snow to the library and then to Charlie’s “favorite American restaurant” (the Golden Arches). He again curled up under his blanket after that and then, much more cheered after looking through some old photographs of ferris wheels and merry-go-rounds and even Portia his uncle’s dog, Charlie was more than ready to pull on his boots and hat and puffy coat and stomp off for a walk with Jim.

Until that tooth started wriggling; until just before bedtime: It was only in these moments of transition, when Charlie was in the inbetween time, between a snow day and a school day, that I seemed almost able to sight rays of confusion passing over his face, and he again lay on the couch and cried, his right hand tucked behind his head, for comfort.

Honestly, I am not surprised that the music Charlie called for us to “turn on!” this afternoon was “Burrrds!” singing Turn! Turn! Turn!.

Music really can mean like language does: You can still hum a fine tune with a wriggling tooth.

Posted by: autismland | February 14, 2007

A Passage from the Charliad (#603)

Everything we had planned for this afternoon and evening being cancelled due to the impending winter storm, Charlie and I found ourselves at Target and, in particular, the mega-sized Target store by the town we used to live in.
Brightface
Charlie’s face lit up when I said we needed to go there for a selection of mundane items: Fabric softener sheets. The contact lens solution I have not been able to find in any store. The special “no bleach” cleanser for the shower.

And, valentines for Charlie to pass out: We had bought candy for his teachers and the bus driver and bus aide, and still needed some for the five other students in his classroom.

The parking lot was packed. I found a place near the back and opened the door for Charlie, who simply sat, then climbed out s-l-o-w-l-y and silently followed me in.

From the moment the fluorescent lights were shining down on us in the familiar space where Charlie and I had used to try to while away an idle moment on a hot or cold or rainy day, Charlie squared his shoulders and tensed his facial muscles. I said to myself, “No dawdling……” and pushed the cart myself. We went past the knock-off handbags on our right and Isaac Mizrahi’s latest on the left and straight towards several racks of board shorts (Easter items were already on display in the front shelves). Past the sporting goods and the shoes and towards the toys Charlie shows less than zero interest in and I realized we were in a landscape so deeply remembered inside Charlie that every aisle, every thing, bore the aura of our own old town and all those long days in the wrong school.

“Daddy blue bankett! Grannpah!” Charlie called out by the kitchenware. I had left the cart in the aisle while I looked for an item and suddenly heard a lot of shake-rattle-and-rolling: Charlie was pushing the cart at full speed and I had to run to stop it, and him.

Shampoo, that contact lens solution: I threw these into the cart, we got in line, we got into the car and I remembered we had not gotten any valentines. Charlie sat on his heels and said “Daddy” when I told him we would were going to meet Jim—-and then burst into tears soon as he was in the house and sitting in his favorite swivel chair by the front steps. “We’re home,” we said and slowly he pulled off his hat and coat. Charlie shuffled downstairs for his blanket and ball and calendar, arrayed them on the rug, and ran to jump on the couch, calling out the names of his teachers.

At the end of the Roman poet Virgil’s epic poem about the founding of Rome, the Aeneid Virgil shows his hero, the Trojan prince Aeneas, fighting with Turnus, the leader of the native Italian people. They fight with swords and shields; they throw rocks; finally, Aeneas chases Turnus, ever more weakening, ever more desperate, round and round in a terrible pursuit that is more than reminiscent of a similar scene in Book 22 of the ancient Greek poet Homer’s Iiad, when Achilles chases Hector around the walls of Troy, “swiftly indeed did they run, for the prize was no mere beast for sacrifice or bullock’s hide, as it might be for a common foot-race, but they ran for the life of Hector.” Just as, in Virgil’s Aeneid, it is hard not to see Aeneas as like Achilles, a godlike warrior, and Turnus like Hector, a noble prince whose time is over. Aeneas and Turnus ight on a landscape of mythological memories that are no less strong as Charlie’s unforgettable sense of what every step and aisle of that Target store means to him.

Our lives in Autismland are more about finding, and using, household cleansers than fighting battles on the windswept fields of Troy. And yet I think our simple, daily feats of taking our child who has autism to the grocery store—-waiting in a doctor’s office—coaxing out a new, full sentence—-are more than worthy of any epic poet worth his keep in dactylic hexameters.

And I think you know who the hero of epic—the Charliad?—is.

Posted by: autismland | February 13, 2007

A Plate of Ketchups (#602)

I don’t think it will surprise you to know that obsidere, the Latin root word of “obsession,” means “besiege”—-especially if you have every spent any time hearing your child who has autism say some word, some phrase what seems like a hundred-plus times in a row, or when everytime your look up or glance back into the kitchen, you hear the clank of all the glass and plastic on the refrigerator door clank: Someone has opened it again and someone‘s fingers are in someone‘s mouth……
Walkpals_1
I caught Charlie red-handed (he was going for the ketchup bottle shortly before bedtime) several times tonight—after I had walked up the stairs to see a pajama-clad boy reaching up into the cabinet for a plate and picking up a bottle of Heinz’s he had just removed from the refrigerator.

Last Wednesday morning—before the Wrecking of the Tapes—I had found Charlie licking ketchup off his fingers. The plate on the counter was nicely finger-painted in regular red streaks. The ketchup bottle was almost empty and was readily dispatched into the trash—-but the bottle tonight was fully loaded and somehow going to bed on a stomach filled with ketchup straight up followed by melatonin did not seem like a recipe for the best of school days tomorrow (or of a good night sleep tonight, but perhaps I think too much like a mom……).

I asked Charlie to put away the ketchup—-“it’s kind of late, 9pm!”—and he glumly assented. I sat down to repair a tear in the lining of my coat—heard that familiar footfall and the clank…..—“Charlie…….”—heard the door shut.

Three minutes later, heard the football and the clank again, but a much slower response to my “Charlie!”

This went on for a few rounds. Perhaps some drive for the taste of Heinz had settled upon Charlie and was drawing him, again and again, to the refrigerator; I found myself feeling something more than beset by the back-and-forth he and I were locking ourselves into in an edgy cat-and-mouse game. And if I might seem to be the cat guarding the cheese while the mouse artfully dodged past, in reality it was Charlie who was the leader of this game of catch-me-eating-ketchup-if-you can.

On the one hand I felt like cheering: Charlie, in some display of theory of mind, was quite attuned to when I was and was not paying attention, and of what to tell me so that he could have the kitchen all to himself (“Mommy, stairs. Moof, Mommy.”). He grinned just enough while keeping one eye fixed on me (I know because when I looked up, there he was looking at me while reaching for the red stuff) to let me know he’d fooled me once again. (Why do mothers so often think their child will do as they say?) On the other hand, I felt a sense of rising aggravation: I liked being neither cat nor mouse.

So I reminded myself, don’t be either. I smiled just enough, requested for Charlie to yet again put away the ketchup, sat down with my coat and needle and thread in the dining room, a yard away from the refrigerator.

Charlie appeared once more. I remembered something. “What about we pack your lunchbox?” I asked.

“Lunchbox, yes,” said Charlie.

“With a bread,” I said.

“Yes, bread,” said Charlie.

“And some of that chicken from yesterday.”

“Eat sick-kenn, lunssbox, yes.” Said Charlie, appending the name of one of his school aides (a young man whom Charlie often talks about). And, after a few springs on the couch, collected his blanket, calendars, ball, and an old pair of my flip-flops; arranged everything on his bed or on the floor beside him; told us “goo night!”

When we lived in our own, old house, we simply did not have things like ketchup, relishes of varous sorts, Wonder bread, etc., etc., that are my in-laws’ staples. It was easier not to have to teach Charlie not to lap up full plates of ketchup—-but, while I do have to keep a closer eye on any kitchecn shenanigans, Charlie has been learning some important lessons: You don’t have to eat it all (a whole plate of brownies) at once. Save that for Grandma. That rice is dinner for Veronica, my in-laws’ live-in nurse.

“Ketchups” and nervous “I wants” were not what Jim and I heard Charlie saying as he settled down to sleep. He was singing: “We aww wiffv inna yal-low summarine, a yal-low summarine…..

Posted by: autismland | February 12, 2007

The Family That Swims Together…… (#601)

The first thing we saw when we got to the pool was a very large colored ball being batted around the water by kids Charlie’s age as some very young-looking lifeguards stood at attention. Charlie got in slowly via the stairs at the shallow end and Jim had swum to and back from the deep end before Charlie got in. Charlie’s eyes were big and staring and his face seemed just a little glum.
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For haven’t I so often referred to Charlie as the kingfish and to water as his natural element? And we had indeed swam in this pool before: It is our YMCA pool and Charlie has made himself at home in these waters before.

In all those previous times at the pool, Charlie has swum in a special weekend program for autistic children only. There are high school volunteers and, while it is hardly an organized event, the presence of the volunteers and of all of us parents watching from the sidelines lends a sort of structure to things. The younger children stay in the shallow end, most keeping close to the volunteers or their parents, while a far smaller number swim in the deep end. All are good and strong swimmers like Charlie. They get stuck sometimes staring at the stairs in the deep end or gathering a dozen swim noodles under them—like Charlie, they move in patterned ways—a bit more deliberately, a bit more solidly; maybe one or two dives in, carefully, methodically.

Today it was Open Swim and, while there were probably fewer children in the pool, there was a lot more commotion. At least three and sometimes eight kids rode a foam raft, laughing and ducking when someone jumped in suddenly from the side of the pool. A man swam laps using a butterfly stroke. Kids dived in anywhere and at all times; kids sunk to the bottom in contests about who could stay under the longest and bobbed up out of nowhere; that big ball rolled and lolled around the deep end (both Jim and I got in its path and pushed it on).

A completely different pool.

Jim gave Charlie piggy backs to the deep end, with the two of them sinking almost instantly underwater, and then Charlie was on his own, I swam nearby and Charlie started moving through the water, seeking open space. He hung by me for a while on the ledge in the deep end before making the journey back across, again skirting the faster-moving, loudly laughing, other kid swimmers. The three of us fell into a brief routine of Jim swimming back to coax Charlie to the deep end while I added encouragement. Charlie started smiling a little as he made his way around the pool. As was inevitable, another swimmer, or a leg or arm, came into his path and Charlie first paused, then kept moving, steady as he goes.

After 25 minutes, Charlie got himself into a tangle of swimmers rolling the gigantic ball back and forth beside the crew on the raft and Jim and I had one of those fleeting moments when Charlie was just another kid in the water, holding himself up among his same-aged peers and swatting at the ball when it rolled by him.

After 35 minutes, Charlie turned himself over onto his back in the deep end and, close beside the lane marker, swam the length of the pool with his signature grace that often leaves me wondering, what if Charlie spent more of his time in the water than out of it………..

As Charlie was getting ready to go to bed, Jim was putting some of his books onto the shelves in Charlie’s room (it used to be my father-in-law’s study) and whistling (People let me tell you ’bout my……). Suddenly Charlie sang out,

“All time bess friend.”

and (after Jim sang “He’s a warm hearted person”)

“Heh’ll wuv me too duh ennn.”

and (as I was about to turn off the light)

Hugg!.”

It was some sweet harmony.

Posted by: autismland | February 10, 2007

Love the Detour (#600)

…. love the detour. Take the longest route between two points, since the journey is the thing, a notion to which, contaminated by the Zen-fascist slogans of advertising (“just do it!”), we all pay lip service but few of us indulge.
Trainrider
I read those words—part of a book review in the February 11th New York Times by writer Will Blythe, the former literary editor of Esquire magazine—while looking over Jim’s shoulder as we took New Jersey Transit late this afternoon—-the three of us “indulging” ourselves in that “longest route between two points.”

Charlie does love to be in motion, and the kind of motion provided by the networks of trains and subways and the PATH around New Jersey (where most commuter trains lead to New York) seems almost too well-suited for his “loco-motive” proclivities. If the two points today were “home house” and a certain restaurant in Hoboken where, last April, Charlie had had to be loaded, screeching and banging, into the car after we were told that the restaurant was closing early, then the obvious route was not the train-ride tour we embarked on today.

There are more than a few train lines here in New Jersey—-some going down to the shore, some going northwest, some moving through central Jersey and near to Philadelphia—and we first had to drive to another town, climb the stairs past some dried-up weeds and a lot of litter, and take Train #1 down to central Jersey, and then a two-car shuttle (Train #2) that takes you to the edge of a university campus. We got out, and walked up to the library; I returned some books and noted that Charlie was sitting on the shiney lacquered square bench that I used to walk past several times a day, twenty years ago. I realized that the return train left in fifteen minutes and we walked briskly back. We took the shuttle back (Train #3) and then, on Train #4, Charlie sat up stiffly on his knees and looked out the window at a landscape of office buildings and suburban houses.

We ended up in Newark and Jim–“Now we’re clicking!”—sighted what would be Train #5 awaiting us. Charlie nudged his way into the window seat and looked out earnestly at a network of steel bridges towers, the Pulaski Skyway, the vistas of shipping containers and cars awaiting their journeys to the hinterland, the Benjamin Moore plant, downtown Newark and—farther off—a church steeple and some business towers over in Jersey City, and then into Hoboken. The mile-square city is where On the Waterfront—directed by Elia Kazan and starring Marlon Brando as a broken down boxer and Karl Malden as the waterfront priest—-was filmed; the book that Jim has been working on for much of Charlie’s life starts with the real person, Fr. Pete Corridan, who was the model for Malden’s role, and we walked down a cobblestone alley that appears in the movie, Jim recalling elements of the plot.

The yong Polish waitress looked surprised when we told her that Charlie needed a regular–“adult-size”—burger. After he had eaten every bite, munched his pickle, and requested “ketchuppp” several times from Jim, we walked back to the train station, just catching a glance of the Empire State Building across the Hudson. We had just missed a train so Jim directed us to the PATH. Train #6 took us to Journal Square in Jersey City and a long wait in the cold (there was no point in going up to the station, which is not heated). A young father, the back of his drooping jeans brightly embroidered, pushed a sleeping infant wrapped in fleece bunting, sleeper, hat, blankets, and a plastic covering over his stroller. Three Indian men in dark jackets and knit caps talked in a circle. Beside the graffitied wall, group of teenage girls each held a single flower (some looked as if they were made of paper) while one young woman checked her cell phone and jumped up and down to keep warm. Charlie started jumping too and grinning and I joined him (Jim didn’t). The PATH (Train #7) finally came and we all pushed our way in.

Back in Newark, we got tickets for the final train, #8, while Charlie admired a display of cakes and cheesecakes. I reminded him that we had to go home “for blue blanket” and, pulling a long face (and after several requests from me), he followed us up the train platform, and then to the black car and back home to his own bed, well-provisioned with blankets, pillows, the calendar, the snowman. He pushed his feet and legs into Daddy’s blue blanket which I had folded so it resembled a sleeping bag, all while humming Yellow Submarine.

It was a great Saturday trip, and a great day with Charlie.

Not that the trip, or our Saturday, came without its moments of anxiety (the garbage, where the blanket was), sticky fingers and misplaced mud. I am sure I will be writing more about these in the very near future—because isn’t it all just part of the total experience of life with autism, which (for me) is a life full of detours, and dead-ends, and astonishing discoveries?

You travel, you come home.

In Autismland, the journey is the thing.

Posted by: autismland | February 9, 2007

Beach Blanket Babylon (#599)

That is probably going to go down as my Most Randomest Title ever, but once it came into my head, it has stuck. (For the record, I have never seen the musical, but cannot forget seeing photos of former Mouseketeer Annette Funicello dancing with a Christmas tree in the Sunday entertainment ads.)
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And “beach” and “blanket” have a lot to do with each other in Autismland, or at least in the corner Charlie and Jim and I occupy. It was some years ago that my parents gave the big king-size polarfleece blanket to Jim and me. It became “daddy b’ue b’ankett” because Charlie had so often observed said blanket, in all of its blueness, with Daddy under it. Soon afterwards, Charlie appropriated the blanket for his own uses, which were initially of a highly sensory nature (he would often wrap himself in the blanket and walk around the house as if swathed in Merlin’s cloak, even on a 90 degree day) and has since become more of “I have to know where it is or the world, and I with it, will fall to pieces right now” kind of thing.

This indeed seemed close to happening two times today. Charlie’s face registered happiness for about 30 seconds when he got off the bus, then turned into a frown as he ran inside, first downstairs to see that the blanket was on the floor of our room. He draped it around his shoulders and went into the kitchen and looked under the sink at the garbage can, which was maybe a third full. ‘”Garbadge! Takeout garbadge,” said Charlie, with a worry-whine in his voice. I said that he could when it was all the way filled—-I do think that Charlie has connected his taking out the garbage with his knowing that his blanket will not go out in it, hence his requesting to take the garbage out multiple times a day.

Charlie cried out and hollered “bankett! bankett! bankett!”, and ran nervously through the house, blanket clutched close to his person. He calmed down a bit to look out the window for his ABA therapist and then threw game pieces and moaned through the first hour of his session—and then started grinning and talking more clearly during the second (some gluten-free pizza crust I found in the refrigerator helped).

Charlie bid the therapist a smiling “good-bye” and we went to pick up Jim at the train station and then out for Charlie’s Friday favorite, brown noodles. He has only been eating about half his bowl at the restaurant of late and asking to take home the rest—as if he is in a hurry to get back home to check on that blanket, which he called for as I was pouring his noodles into the take-out container, as we got into the car, and on and off on the ride home.

So what it is about this blue blanket to inspire, if not demand, such devotion?

I cannot say for sure but I have long thought that there is some connection between the big blue blanket and big blue bodies of water—the swimming pool, the ocean—-that Charlie has long found such sensory delight in; has long seemed to feel so at home in. Something about how the once-soft blue blanket—it has been washed numerous times—engulfs him just like the water that Charlie likes to sink down into and duck under, all that wet pressure enwrapping him.

So it seems something more than poetic justice—justice autism-style?—that Charlie ran into the house singing “The Rivers of Babylon,” and smiling, and ran to get a fork to finish his brown noodles.

Posted by: autismland | February 9, 2007

Emotional Process (#598)

After what I will refer to as the Wrecking of the Tapes, I have been waiting for Charlie to have a Delayed Reaction. People talk a lot about how autistic children have sensory processing issues, how the sounds, or things they see, or things they touch, are registered and “inputed” at a more intense, or at a slower, than-for-most-of-us rate.
Charliecomputer
More and more, I have noted that Charlie has something of a “processing disorder” with emotions. Far from him not having any emotions—far from him being without affect, and isolated, and withdrawn according to older, incorrect definitions of autism—Charlie feels and experiences anger, happiness, sorrow, love, physically, if not in every cell and sinew of his body. I think of his heightened focus at the beach, accompanied by a sense of richly joyous delight so that I think, how can we ever wrench him away from here………. I think of how quickly he can fall into the chaos of panic over worrying about his green squishy ball, and nothing I say or do can comfort him.

Over the past few years, we have begun to note that, after events like my parents leaving after a visit or saying good-bye to the ocean (“we’ll be back!“), Charlie gets the most upset one or more days after the fact. On Wednesday morning, Charlie did not show signs of remorse about wrecking the cassette tapes that Jim had made twenty-five years ago; Charlie laughed, he ran in circles, with a seemingly wreckless energy. But no tantrums occurred today, and Jim reported that Charlie had been very happy running onto the bus.

There was one word, accompanied by a signature nervous glance, that I heard Charlie say a lot today:

“Blank-kett.”

He said it when he got off the bus; he opened the door of the washing machine where it was in the rinse cycle; he looked around, teeth clenched. I assured him that the blanket needed washing and a snack and his speech therapist distracted him—-sort of; at one point, I heard the speech therapist opening the dryer and telling Charlie what buttons to push to turn it on. During dinner, he kept the blanket on the floor of the kitchen till I requested that he put it in the dining room.

As I was stir-frying some chicken for him, Charlie said “garbage” and, since it was full, I said “okay, you can take it out.” Charlie carefully pulled the red handles up and dragged the bag over his back to the garbage can. Just as he was finishing dinner, he looked at me from under his eyebrows and said,

“Gar-badge.”

“You just took it out.”

“Mommy, I want gar-badge! Takeout gar-badge!”

I noted that he had just taken it out and that we (as in Jim, Charlie’s home ABA coordinator and I) had concluded that it was best to have Charlie only take out the garbage when it is full—because Charlie has been making sure he takes out the garbage so that nothing he likes too much is in it. And he has been asking to take it out a lot.

Charlie became more and more distressed that he could not take out the almost-empty garbage bag. He burst into tears: “Garbage bank-kett, all done bank-kett, garbage!”

“Charlie blanket,” I said. “It’s yours. It’s your blanket. Not in the garbage.”

“Bank-kett, not inna garbage, bank-kett.”

“It’s yours.”

“Iss yahss.”

Charlie was careful to arange the blanket (and the squishy ball, and his calendar) right in front of the bathroom door while he showered, and to wrap it around his person, or sit on it, or drape it over his lap, for the rest of the evening—as if his Reaction is taking the form of, what if they take away my favorite thing because I did the wrong thing?

Hugg!” said Charlie a few times and I hurried right over, and tried my very best to say without so many words to him,

There’s no what if, just what is: One good boy, one Charlie.

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