We Go With Him

Doughnut Burger

This post is going to be a jumble-potpourri-mishmash of things (sort of like this doughnut burger, hence the title) because too many things are on my mind at the moment.

1) We don't know if Charlie is going to have yet another snow day Tuesday. No word yet from his school as I type this at midnight EST. Jim happened to be near the town where the Big Autism Center is and told me that it is definitely snowing there, and it has started to here (just 35 minutes away).  Am sleeping with my phone nearby to get the news from the emergency hotline post-haste.

2) Having gotten through last week's snow days and a long weekend, "school" is a popular word around here. Yes, we love family togetherness; yes, we absolutely heart school (Charlie most of all), and you can only be philosophical about yet another day off from school for so long. 

3) Speaking of philosophy reminds me of no one less or other than......Plato and Aristotle, whose views on women and their "inferior natures," etc., I'm prepping for Tuesday's Women in Antiquity class. 

4) Fortunately, things for Women Today have improved, or at least to the point that even the President skips out of meetings about his health care plan to attend his daughter's band recital.

5) Jim and I have both been devoting ourselves to keeping things as peaceable here as we might. Monday found us unable to resist another drive down to the ocean (a different spot than on Sunday). It was much warmer (high 30s) and Charlie was very game to run out across the snow, over the sand, and near the waves.

6) Those warmer temperatures were a signal of an impending storm, which led to a noticeable rise in the barometric pressure, which had something to do (along with just a brief period of video-watching on the computer) with Charlie crying out from a storm in his head, and spending half of a walk still crying and swinging his head. Considering all the disruptions to his schedule, I didn't think it going to be a completely "behavior-free" series of days.  

7) I know we can muddle through one more unexpected day off of school for Charlie. But am sure hoping for at least a delayed opening for school---Charlie's anxieties about no school are pretty much contagious with Jim and me.

8) While our attention is obviously homeward directed, we always keep an eye on "the rest of the world. Jim and me both being professors, and me having gone through the tenure process just two years ago, we've been shaken by the deaths of three biology professors and the injuries to three more people at the University of Alabama Huntsville after another professor, neuroscientist Amy Bishop, is accused of shooting them at a faculty meeting. One blogger has speculated if Prof. Bishop might be "easily diagnosed with aspergers syndrome [sic]." Possible diagnosis of anyone is always a topic I'm very, very wary of, though I suspect this won't be the only time Asperger Syndrome may be mentioned in regard to what happened in Huntsville.

9) Still determined to keep trying to keep moving forward even when things feel so disjointed, after Charlie had watched one of the videos he likes (and has seen about a 100 too many times), I showed him a video of a lion dance competition in Malaysia and talked about him being part-Chinese and it being Chinese New Year, gong hay fat choy. Quite to my surprise, Charlie watched the whole video, with the volume turned down (those drums can be loud) and my partial translation of the male and female commentators' patter (Ta chiu-le. Gaoxing! Ta chiu, wo jie.....) Maybe tomorrow we'll take a look at Shen Xue's and Zhao Hongbo's gold medal performance (she does have the same last name as I do --- Zhao is the Mandarin pronunciation of Chew).

Or maybe we'll just watch another lion dance. Or the men's curling.

Off Season? Never Heard of It

Though Sunday was a grey day, we went, as noted above by Charlie, to the ocean. If you've read my blogging from the days when I wrote My Son Has Autism, Charlie is in his natural element at the ocean, near the water and waves and the sand and all that open space and sky. Hence for almost year since Charlie was a baby we've vacationed for two weeks at the same spot on the Jersey Shore, renting a series of beach houses. 

This winter has been the first time we've ventured "down the shore" (Jersey-speak that I, a native California, have gladly added to my vocabulary) in the off season. The swimming season being from Memorial Day to Labor Day, the "on season" isn't really that long. Jim---who spent his boyhood summers at the same place on the shore---starts counting down the time we'll return "for two weeks in August" virtually from the day we return home.

And it's finally occurred to us, the beach knows no seasons. You're probably not going to gambol on the sands in nary but a swimsuit in late January, but the ocean is always there, with the waves and the sand. Indeed, out on the beach today, we found it quite pleasant to walk on the clayey surface in boots and black shoes, well-bundled up against the wind.

Of course, in the off season, we also get the beach pretty much to ourselves. Sure, you have to poke around to find something to eat, but it's not exactly hard to find a place that makes hamburgers or a convenience store in New Jersey. Many of the stop lights are set to blinking yellow on the main streets, so we can drive around without frequent stops and the music-blasting, fun-party-trouble seeking throngs are nowhere to be seen. It's a relaxing experience for all of us to be there.

 

Especially when Charlie was younger, his love for the beach was equalled, if not often overwhelmed, by the pain of having to leave it. Our vacations have always been a thorough mix of sheer joy at seeing Charlie in the place he loves (and that Jim and I love), and deep anxiety, as Charlie's worries about leaving the beach---manifested as often severe neurological storms---have been ever present, and especially on and after leaving the beach. Even the promise of "we'll be back" could do nothing to assuage Charlie's sorrow. Consequently, we have not cared or dared to visit it in the off season. Too, when Charlie was younger, his main interest was to get himself into the waves, no matter what---that is, no matter the temperature of the water, or whether or not he was fully clothed. 

Charlie now not inclined to go into the cold water and, indeed, kept a respectful distance up on the sand, out of the waves.

And after a walking up and down the beach (against the wind on the return trip), Charlie told us he wanted to go "home," rather than driving more around the beach, so home we went. He and Jim finished off the day with a walk around our neighborhood, before dinner, computer time, and bed.

I think Charlie understands that when we say "we'll be back," we're not funning him.

And Jim and I agree: For Charlie and for the three of us, it's always the season to be at the beach; on the waterfront.

 

Chinese American Culture and Autism

Here in the US, when people hear that autism was referred to as "childhood schizophrenia" in the first edition of the DSM (1952), they're often flabbergasted to hear autism linked to schizophrenia. Today we talk about autism as a developmental disorder/disability; as a neurodevelopmental disability. Wary of the "refrigerator mother" theory of autism, we're careful not to speak of it as a psychological or psychogenic disorder, and certainly not as a mental illness. 

But where you're from shapes your understanding of autism. Unstrange Minds: Remapping the World of Autism (2007) by anthropologist Roy Richard Grinker examined differing conceptions of autism both around the world (in South Korea, India, and South Africa) and at different times in the past century in the US. An examination of the changing diagnostic criteria for autism provides a capsule history of how we in the West have changed in understanding autism; the argument can be made that the broadening of the diagnostic criteria for autism has played a significant role in the rising prevalence of autism (now 1 in 100 in the US). Reports on the DSM-V have revealed plans to "collapse the spectrum" by using a single diagnosis for the disorders currently referred to as Autism, PDD-NOS and Asperger disorder.

An article in yesterday's New York Times magazine examines how, around the world, different cultures perceive and understand psychiatric illness in different ways---in particular, not according to medical and biological models---and how the "American way" of understanding mental illness is spreading around the globe. Autism is not specifically referred to (anorexia, depression, and schizophrenia are some of the disorders discussed) but much of what Ethan Watters writes is relevant:

This unnerving possibility springs from recent research by a loose group of anthropologists and cross-cultural psychiatrists. Swimming against the biomedical currents of the time, they have argued that mental illnesses are not discrete entities like the polio virus with their own natural histories. These researchers have amassed an impressive body of evidence suggesting that mental illnesses have never been the same the world over (either in prevalence or in form) but are inevitably sparked and shaped by the ethos of particular times and places. In some Southeast Asian cultures, men have been known to experience what is called amok, an episode of murderous rage followed by amnesia; men in the region also suffer from koro, which is characterized by the debilitating certainty that their genitals are retracting into their bodies. Across the fertile crescent of the Middle East there is zar, a condition related to spirit-possession beliefs that brings forth dissociative episodes of laughing, shouting and singing.

For the past generation, "we in the West have aggressively spread our modern knowledge of mental illness around the world......... in the name of science, believing that our approaches reveal the biological basis of psychic suffering and dispel prescientific myths and harmful stigma." But Watters notes that referring to psychiatric illness or conditions as "brain disease" or a "chemical imbalance" or as "genetic/inherited" does not necessarily lessen the stigma:

Unfortunately, at the same time that Western mental-health professionals have been convincing the world to think and talk about mental illnesses in biomedical terms, we have been simultaneously losing the war against stigma at home and abroad. Studies of attitudes in the United States from 1950 to 1996 have shown that the perception of dangerousness surrounding people with schizophrenia has steadily increased over this time. Similarly, a study in Germany found that the public’s desire to maintain distance from those with a diagnosis of schizophrenia increased from 1990 to 2001.

........It turns out that those who adopted biomedical/genetic beliefs about mental disorders were the same people who wanted less contact with the mentally ill and thought of them as more dangerous and unpredictable. This unfortunate relationship has popped up in numerous studies around the world. In a study conducted in Turkey, for example, those who labeled schizophrenic behavior as akil hastaligi (illness of the brain or reasoning abilities) were more inclined to assert that schizophrenics were aggressive and should not live freely in the community than those who saw the disorder as ruhsal hastagi (a disorder of the spiritual or inner self).

And Watters---whose Crazy Like Us: The Globalization of the American Psyche will be published later this month---points out that "people with schizophrenia in developing countries appear to fare better over time than those living in industrialized nations." 

I'm third-generation Chinese American. I talk about autism as a neurodevelopmental disability and see autism, in Charlie's case, as genetic. I am quite Americanized, to the point that some more recent immigrants from China have balked in disbelief when told that I'm Chinese. I (and my parents) were born in the US (in California, to be precise). Only my late Ngin-Ngin, my father's mother, lived in Oakland Chinatown for all of her life, as everyone else moved to the Bay Area suburbs. But a strong sense of Chinese American identity runs through my family.

For all my "Western understanding" and belief in science, the scientific method, and scientific evidence; for all my being so "Westernized" that I teach and translate ancient Greek and Latin, the foundational languages of Western culture, and know little Chinese (smatterings of Cantonese and Mandarin)---for all this, in raising my beloved boy, whose challenges seem at times to grow by the day, whose life trajectory is so different from that of ye typical Asian American model minority child---something of Chinese tradition, Chinese culture, an inflexibly deep-running sense of duty and obligation to the family and to taking care of those in it, persists.

On He and She and Other News

A little phrase Charlie said to me in the car last night signalled his increasing awareness of a subject he's struggled to grasp and articulate: Gender. 

Starting when he was about 5, there've been attempts to teach Charlie the difference between "man/woman," "boy/girl," first with flashcards with carefully selected photos of these pasted on and then with real live people. Society's collapsing of gender markers like "pants for boys, skirts and dresses for girls" and short hair vs. long hair have made identifying those photos supremely difficult for Charlie. With actual people, his responses were sometimes right and sometimes not. Since it's always possible to be 50% right about whether someone is a boy/girl, or man/woman, we could never quite tell if Charlie meant what he said and said what we meant.

Nevertheless. No data or "hard evidence" to back this up, but, based on how he acts, Charlie knows the difference. Up until he was about 7, all of his therapists, teachers, and aides were women (a not uncommon situation in the special education teaching, and the teaching of younger children). When Charlie was 9, he had one male home ABA therapist and two male aides at school and he definitely seemed more animated and active around them. The therapist and the aides were all tall and were quite able to give Charlie piggy-back rides and to toss him around (which Charlie loved). At his elementary school, Charlie had access to a bicycle and he would ride it around the parking lot, with the aides running after him. 

All three guys were, as they told us, very fond of teaching Charlie. From speaking to them, I got the sense that school hadn't been their favorite thing growing up and they always seemed to relish being able to run around and be active and energetic with Charlie. (And so you can imagine what a loss it was to Charlie when he went to middle school in September of 2008 and it was decreed, no more of that kind of "kidstuff.") (Plus, both of the male aides were sent to work with high school students.)

It's also the case that Charlie has at times aimed a hand in the chest area of some female teachers and therapists and of yours truly. Charlie doesn't do this with male teachers and therapists or with Jim. It's not been a big deal to redirect this kind of thing. Indeed, if we make too big a deal of it, Charlie is very likely to try to do it more.

So when, yesterday night in the car, Charlie said:

"Gong Gong Daddy. Po Po Mommy"

I first thought, First time he's said that, and then it occurred to me, I think he's pairing the four of us by gender. And also articulating his knowledge.  

(It is the case that I do wear skirts and dresses from time to time. And I think it wouldn't be inaccurate to say that Charlie's made note of this too.)

Thursday was also the first day around here that felt more like "the usual usual"---I can't write normal; a fair amount of people would not consider our daily existence "normal." Charlie woke up at 6.30am which gave him plenty of time to lie around in bed until he was fully awake, get dressed, run around the house and poke around the kitchen, use the computer, write and talk about the date with me, and load up the white car with various items (not the CD case---he looked crestfallen when we told him we were going to give it a rest, but then seemed content with the radio). He had a good day at school and a good rest of the day at home, going on two brisk walks with Jim. 

It was the first day of no major drama in a while for us unless of course you count Jim and his book in yesterday's New York Times.

And that little phrase that Charlie said.

 

Back to the Old Gold Mountain

Charlie has been accepted into the big autism center. We will be meeting with the director and Charlie's case manager next week.

I learned about this when I checked the voice mail on my office phone as Jim was driving Charlie and me for a quick diner dinner. I was due at the Newark Airport for a 7.05pm flight to San Francisco: Ngin Ngin's funeral is 9am this Saturday morning. Afterwards she will be laid to rest beside Yeh Yeh, my grandfather, on a mountain that looks west towards the San Francisco Bay, the Golden Gate Bridge and (as my dad has so often said to me) all the way back to China.

We didn't dawdle at the diner. It's become wintry in New Jersey, with a cold rain. Not sure if Jim and Charlie will be able to make it out on their bikes this weekend while I'm gone, let alone kayak (though Jim noted that, should Charlie call out "kayak, yes," they will likely " be the twosome in the only vessel bobbling through choppy Barnegat Bay").

San Francisco, where I flew into around 10.30pm, was known as Old Gold Mountain to the Chinese who emigrated from Toisan in Guangdong Province. That's where Ngin Ngin and Yeh Yeh were from; that's where, in a kind of ultimate way, I'm from. San Francisco got that moniker because the Chinese who came over were, like so many others, in search of gold and riches (California was also called "Gold Mountain"). They didn't exactly find gold: Many found more hardship, and loneliness, and sorrow, and suffering, than they might ever have imagined---and many struggled through it all, and (like Ngin Ngin and Yeh Yeh) made it, though the road was often rough and rocky.

I guess you could say we've been on a similar road so often in our life with Charlie. When times get tough (as they have been), it goes without saying, it helps me a lot to think of what Ngin Ngin and Yeh Yeh endured. There are times when I know that Jim and I just need to put our heads down, set our shoulders straight, and keep pushing, keep plodding, onward.

As I got out of the car at the airport, Charlie looked at Jim and me and said "No. No." I opened the back door and gave him a fast kiss and one to Jim, and grabbed my bags. I'll be back with them tomorrow, Sunday morning; back on the long road together.

I can hardly wait: Life with my best friends of us is just too good to miss.

Write Your Name

Thank you to everyone for the condolences and sympathy on my grandmother, Ngin Ngin, passing away, early on the morning of October 7. Thursday night I bought my plane ticket to fly out next Friday night for her funeral, which will be next Saturday, the 17th of October. My family, with my dad (he is the fourth of Ngin Ngin's five children, and the oldest son) and his siblings and my oldest cousin have been working out various plans and making numerous arrangements, including a Cantonese translator,  paper "money" and lai see (red envelopes). 

Ngin Ngin was the last of her generation to pass on and my family is definitely incorporating a number of Chinese traditions into the service. One is a blanket covering that will take place at her wake. (I had never heard of this ritual before but then Ngin Ngin is the only person I've ever known who lived to be over 100.) My oldest cousin is making a special quilt and said that we can scan or fax images to her, to be transferred to the fabric.

I'd like Charlie to write his name on the quilt, of course. Friday night, after he'd led Jim on a bike ride, we'd had an early diner dinner, and we'd dropped Jim off in downtown Jersey City so he could catch the PATH train to do go to his office (Jim stays home on Friday and gets Charlie at school and I get a nice long afternoon to do things in my office)---after all that, I produced pen and paper and asked Charlie to write his name.

The answer to my request was "no."

"Yeah, yeah," I said. "You have to write your name for the blanket for Tai Po."

"Write your name," said Charlie.

"For Tai Po," I said. "For a special blanket."

"Tai Po," said Charlie. And took the pen and carefully wrote on the piece of paper.

You can see his first try in the photo: I'm not quite sure what happened to the a, looking as it does more like an m or Charlie's way of writing r. There is something distinctly, definitely, Charlie Fisher about that m and the half-oval C, and I think that's one of the best e's I've seen Charlie write. I didn't want to drive him crazy by insisting he keep writing his name on a piece of paper, so I added my Chinese name, Ju Lei Jen, to the right. And saw that, I need to practice writing my name.

I more than wish---Jim certainly wishes---that the three of us could be flying out next Friday night. It's going to be a very quick, and intense, trip, with lots of ceremony, talking (in more than one language), and many people whom I have not seen in years, years and years. Along with Charlie scheduled for intake at a large autism center on Tuesday of next week, a hurried trip to California and for a funeral would be just too much (it could be too much for me, frankly). Jim Charlie and I have traveled so far---covered so much territory---together, I know they'll be with me at every stage of the journey. 

And Jim's writing his name for the blanket, too.

Ready, Go! (#609)

On a walk to the train this morning, we heard the sound of barking behind and from above. Charlie stopped stamping chunks of snow and ice flat and turned his eyes backwards, just as a garbage trunk grunted past us with a large brown dog hanging out the right-side window, right at Charlie.

"Daddy!" Charlie started to call but the dog, being in a moving vehicle, was already down the street, its nose and wagging tongue still pointing at us. Two men wearing neon-bright chartreuse jackets clung to the back of the truck. Charlie looked, set his shoulders, and kept on walking, and stomping on snow as if to say, No big deal. I can handle that.

The unexpected is never easy to contend with----be it the first day of a one-week vacation from school, a drive around the Newark Airport because Charlie and I got there before my parents' plane landed (and I forgot to check the arrival time before we got in the car), the aftereffects of eating a sesame-encrusted bean-paste-filled deep fried dessert brought all the way from Oakland's Chinatown. Charlie was quiet, with a shy smile, on seeing my parents appear at the airport gate and dug immediately into their suitcases and---on finding several Ziplocs of Chinese food---asked Gong Gong, as he calls my dad, "Open!"

Jien duy were my favorite as a child. "I want, I want," Charlie said as Gong Gong put down the plate.

Later in the shower, Charlie started screaming loudly and ran out, and rolled and cried on our bed. Jim surmised it was the sound of a stomachache. I brought Charlie his blanket and ball and helped him into his pajamas and remembered my own childhood indulgences of too much jien duy. Charlie spread his blanket under him and wrapped his left hand in its folds and called the name of one of the aides in his school classroom. More time passed and he got up and lay down on his own bed, and smiled.

Before we left for the airport, Charlie had carefully packed his calendar and Goodnight Moon, which he had taken down from the shelf to read with his ABA therapist in the afternoon, into his school backpack. With this upon his back and his snowboots on his feet, he looked ready to travel the world over and---being well provisioned---to meet the unexpected of a week off from school.

Or a dog in the passenger seat.

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.)

"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.

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.