We Go With Him

The Broken Pattern (#265)

After nearly nine years (plus those nine months in utero) of raising Charlie and living in Autismland, I would say "no" or "not really, but" if asked to rate Charlie according to the criteria of the DSM-IV. Lack of eye contact, lack of emotional reciprocity, hand-flapping, arranging and playing with toys in a set order, and so many others: These get "no's" or "if he does it, he can be redirected."

"Has trouble with transitions" was one criterion that Jim and I always said "no" to in the early days. If anything, Charlie seemed especially to enjoy entering and exiting his classrooms, and smiled to say "hi!" and "bye!" when therapists came and went. But in the past year and a half, we have been noting that--especially at this time of transition, of the changing seasons--Charlie has been having trouble with, yes, transitions. The last day of a beach vacation is not simply a sad event but saturates the preceding days in the swirling black and yellow of a behavior squall. Today any "between-time"--returning from a morning errand-run with Jim and waiting for me to cook a late breakfast; returning from a walk through our little town to wait a half-hour before a train ride--became squall time.

We have been turning to the full apparatus of social stories and schedules of pictures and of words; of simply explaining to Charlie "this will happen and then this"; of ABA; of attending to subtle shifts in Charlie's moods; of I don't know what. And so tonight I searched for photos, laminate, and velcro and put together a schedule to facilitate Charlie's morning getting-in-the-bus routine.

But while these small-scale transitions have led Charlie to erupt in fast-passing behavior squalls, I think that the air of discontent--discomfort--distemper--he has worn for the past week is from his knowing that some really big transitions are on the horizon.

To Have and To Hold (#248)

"Gong Gong bue car!" came the voice from the backseat.

"HAS," I said, braking carefully in the sleet and slush. "Gong Gong has a blue car."

"Gong Gong bue car, ha' bue car."

"Gong Gong has a blue car." I stopped for a red light.

"Gong Gong ha' bue car."

"Yeah, you got it. You have to add a verb. Gong Gong has a blue car."

Just for Charlie to say "Gong Gong car" was a big deal not quite two years ago and it was a nice step when Charlie added the adjective "blue," vs. "Mommy b'ack car," "Daddy green car," "Gramma white car," "Stella red car." When he was 4 1/2 - 5 years old and Charlie's speech was just becoming clear, saying the names of his "favorite people" was a deal so great we tossed him in the air, danced, clapped and cheered.

Under our speech language pathologist friend Tara's direction, Charlie added attributes to his noun-noun combinations: Apples could be green or red, plates could have a barn or Bob the Builder. And once Charlie had linked a noun to another noun--some person to some thing, as my dad to his "red coat" or Charlie riding his bike and then eating sushi, chance pairings of certain things with certain other things became necessary for Charlie. They became essential to the point that, when my parents visited, Charlie first looked for and would not let go of my father's coat with its red lining.

I understand Charlie's apparent equating of my dad with my dad's red coat as a clue to how his mind works, to how Charlie perceives and orders the world, in terms of metonymy. In metonymy, one thing is used to stand for another associated thing. A relationship of metonymy is based on replacement, and this is part of what of I talked about in my paper on autism and the language of poetry.

But it's not poetry I have been thinking about today, but grammar, in asking Charlie to speak (as he can) in complete sentence with a subject and a verb like "has."

Of course, when Charlie says "Gong Gong bue car," I know (due to a thousand past experiences with my little best friend) that he means that my dad has a blue car. And I know that when Charlie says "g'een appo" or "swim--ming" he wants to eat that apple, or to go swimming. The words that Charlie tends to produce on his own--spontaneously--are the most concrete, the nouns that name what he wants or the verbs that describe what action he'd like to do.

The trouble with some of these verbs is that, if I really think about it (and I am a foreign language teacher, albeit of "dead languages"), their meaning is implied; they are non-essential. Saying "fwies" (vs. "I want fries") means Charlie wants to eat those (and unfortunately--due to the bad news about the McDonalds' non-gluten and non-casein-free French fries--we did not get them and he was requesting them so ardently after finding some McDonalds gift certificates from my California relatives). Saying "Daddy home" at 4pm means, Dad should come home now and not after he is done working. "I want" is implied in all of these statements.

Autism Fragments (#242)

mingled with all kinds of colors

That is fragment #152 of Sappho, pantodapais[i] mem[e]ichmena chroiaisin if transliterated from the ancient Greek. Just three words do not a poem make for Sappho, of course: Those three words are what was found of a whole poem on a papyrus fragment buried in the sands of Egypt, or only what some ancient grammarian thought sufficient to quote, for the purpose of illustrating his point about the uses of the dative case.

Three words on an otherwise blank white page.

So often, three Greek words from a lost poem seems to represent how much I really know about autism. Three words that don't even form a whole sentence--some of the letters may not even be correct--and the rest of the page not yet touched by black ink smudges. How many more books and blogs will I have to read to know what I need to know? How many more professional opinions might one need to seek? How many tests---for heavy metals, yeast infections--EEGs, BEAMs, MRIs, PT and other evaluations, and much much more can be done?

To read those three words of Sappho, I need my big Greek dictionary, a couple of commentaries, several translations, a few books and essays about Sappho--the same amount of reference materials and resources I need to read Charlie, not to mention a home ABA therapy team, Charlie's teachers and school behaviorist, two SLPs, our VB therapist.

"Boy brushing teeth. Doing with pen-sill. Boy p'aying wih' toys. C'ean upp! Ride. Ride in car! Ride in bus schoolbus. Bus has wheels. 'S g'asses, eat strawbehr-rees. Boy wahss hanns use so-opes. Bounce to Charlie! Bounce it. To Mommy!"

Sentence fragments---but Charlie strung those words together at his speech therapy session, as the therapist had him play a matching game, work on RFFC, play catch. Charlie's words may be in bits and pieces but they are beginning to fill up much more of the white space on a page than Sappho's three word fragment does.

Strategy in the Autism Wars (#238)

I needed to get sodas for an event at my job on Wednesday and decided that it would be more economical to get them myself rather than to pay $1.25 per can. Charlie and my parents did some more clothes shopping this morning and, as they were sitting down for lunch, I hurried out to ShopRite. I saw Charlie grinning at me from the front window as I pulled into the driveway and then the door slowly opening.

And there I was with 36 (33¢ each) "brown drinks" plainly in view in the back of the black car (it's a stationwagon), all of which Charlie would "mand" to guzzle. (We prefer to limit Charlie's soft drink consumption; sometimes he "works" for it at school.)

And there he was on the porch.

I threw my coat over the boxes and said, "Hi! Mom went to Shop Rite and she got you some green apples and juices." Charlie peered into the bags and then, noting that the back of the car was still up, ran back out. I produced two more bags and he followed me in--I rushed out and grabbed two boxes of soda, shut the trunk, ran to the green car which was parked further up the driveway, found the frontseat door open, opened the backseat door, dunked in the sodas and slammed the door shut and ran back to find Charlie standing in the doorframe, brown eyes expectant.

"Lunchtime!" I proclaimed. "Maybe some....white rice? You can ask Po Po to make it."

"White rice!" called Charlie and ran in to open the refrigerator from which my dad was unloading leftovers. I hurried out, opened the trunk with the key, ran the last box of sodas over to the green car and deposited it atop the two already in there. And locked the car.

Keeping Charlie away from three cases of sodas is hardly the hardest thing I've had to do but it's emblematic of the lengths we autism parents go to do what we think and hope is the best for our children, whether keeping them from drinking too much sugary soda or giving them the best education they can have, an education that prepares them in mind and body to achieve their fullest potential, and for the good life.

Parents often use the metaphor of war to describe how they have to "fight" to get the best services possible, get their children into the best programs possible, "contend" with administrators and bureaucrats and various Powers That Be. And we autism parents do often feel besieged by the simplest struggles of daily life id not utterly defeated before we even strap on our armor when we think about our children's future, whether at nine years old or at forty-nine. We fight the battles on the frontlines of the playground, wage our campaigns for inclusion in school classrooms, marshal our weary forces to another school meeting armed with piles of paper and hope, enter into unequal combat with doctors and "autism experts," wage war within ourselves and with (as it sometimes feels) the whole wide world to understand,

How did it happen that I'm a foot soldier in the autism war trenches?

This martial stance of parents on the frontlines of the autism wars recalls no less figure than Ares, the Greek god of war, mad and forceful and rousing fervor among the troops.

Actually, another of the ancient Greek gods is a god of war: Athena, goddess of wisdom. She is the goddess of war in the sense of strategy, in the sense of the art and craft of war, of thinking and figuring what you have to do to win.

Waking Up From an Autism Nightmare (#214)

At 2am, we heard howling and knocking from Charlie's room and ran in to find him twisted up in his blankets and (I think) a nightmare. He ran into the middle of our bed and kept hopping up to lift the window blind while saying "schoolbus" and fixing his big brown eyes on us. At 5.30am we gave up trying to sleep and I went downstairs to make coffee, admonishing Charlie "try to go back to sleep, sweetie, the bus will come at 8 o'clock." Jim was out the door by 6.15am to teach his morning classes in the Bronx.

Charlie went back to sleep shortly after that, so I calculated that--along with the 4 hours he had gotten in from 10pm to 2am, he would have a grand total of just over 5 hours of sleep. (Jim and I averaged out an hour or two between us.) Another day in the autism trenches?

The bus door slid open, Charlie ran down the porch steps and in with a big smile. The aide smiled as she readjusted her sari so she could buckle Charlie's seat belt. "Charlie is feeling better," said the bus driver. And she smiled, a little.

So I don't have to say what I was doing as the bus turned around and drove Charlie away to a good day at school, a good game of catch with Dad (just arrived back after a speedy drive down the Parkway), a good ABA session, an overly long wait for Jim to return from visiting his parents in the hospital, a hamburger with fries and a pickle at a favorite hot-dog stand, a shower and conking out at 8.40pm on our bed.

Charlie has slept through the night since he was two months old; some of the medication that he takes also seems to play a part in his deep night-time sleep. So the 2am wake-ups are highly unusual. Charlie does not have the verbal language to tell us what caused the screaming and the knocking on the wall, but I have been saying that he was having a nightmare.

The Best Therapy (#209)

My 100-year-old grandmother, Ngin-Ngin, speaks no English and my Cantonese consists of the numbers 1-99, "he/she is," "he/she is not," "beef and rice," "more," "thank you," "you're welcome," "good-bye," and "cookie." Our communication has always been based on her smiling, me nodding and smiling, and me eating her herbal soup, dumplings, seven-layer pudding, jai for Chinese New Year. While I have often wished that I might sit and ask her about her girlhood in her village, Hong Mi, or what it was like to be detained on Angel Island, or to sew parachutes in a factory during World War II, I am wondering if her gift to me is something more than the rich history of her life as an Asian-American woman in Oakland, California.

I have to wonder, did all those years of hearing the slurry, throaty tones of Ngin-Ngin's peasant Cantonese and knowing there was meaning in those sounds I had to ask my father to translate, prepare me for reading Charlie? When my dad told my sister and me, "Eat your soup. Ngin-Ngin wants you to be strong and healthy. She loves you," perhaps I was learning the non-verbal communication that enables me to know that, for Charlie, sometimes the best way to talk is through the concrete; to say it with brown noodles.

Charlie was edgy and wearing his lost boy expression for most of the morning. A passing mention that we were going to visit Jim's parents this evening on the eve of their both having knee-replacement surgery led to silence, then an alarmed look from Charlie:

"Gramma Grappa white rice Portia doggy!"

Tabula Non Rasa (#206)

"Bee-oo-ti-fool!" Charlie called out as he ran from the dinner table and then back to put his dishes in the sink. He was very groggy this morning and I had to unwrap him from his blanket and coax him onto the red bus. After a great morning working on his programs, his concentration must have ebbed and his head sagged. It has been a week of change--Jim and I back to teaching, a kindly but new babysitter meeting him at the bus--and Charlie, a boy full of emotions, must register his feelings.

"Peaceful, relaxed, happy" was how the verbal behavior consultant described Charlie's face after his late-afternoon session with Miss Cindy. "Turn on" Charlie insisted when I was about to take out the Old 97s CD; after a Mom Hot Showah, he asked to hear his latest favorite songs with a delighted grin: "I want In Dee Ee-eh-ning. Mommy! Hello ee-yess, Gwand Oll Dukeov York! Mahm-mee. Krissmass two fuhnt teeth!"

After a Wednesday of change, Charlie was glad to do the same old Thursday things with me and "Daddy office. Inna Bwonx! Daddy home, 'strain."

Tabula Rasa--Latin for a "blank slate"--was the title of the "opera/theater work" performed after the autism seminar I spoke at last night as part of NEUROfest. I wanted very much to see Tabula Rasa, which, like "The Boy Who Wanted To Be a Robot," was about autism.

As the composer, Henry Akona, mentioned during the autism seminar, Tabula Rasa draws on discussions with an autism mother about her daughter and is made up of

three interlocking stories about children lost in the woods: Victor, a.k.a., The Wild Boy of Aveyron, a feral child found in France in 1800 after having spent his formative years in the wild and now lost in a forest of 'civilization'; Emily, a contemporary girl with Autism lost in a forest of antidepressants; and Hansel and Gretel of storybook fame, literally abandoned in the forest. Tabula Rasa examines the effects of nature and nurture, and the fundamental meaning of language and human relationships.

As I noted last night, Charlie takes Zoloft and Risperdal. Bruno Bettelheim is known for his work on the meaning of fairy tales in The Uses of Enchantment (1975), in addition to his promoting of the refrigerator mother theory of autism--that autism is caused by cold mothers; that autism is a sort of attachment disorder--in The Empty Fortress: Infantile Autism and the Birth of the Self (1967). In one chapter, "Persistence of a Myth," he also suggests that so-called wild or feral children--including Victor," the "wild boy of Aveyron"--had infantile autism.

Talk about an autism myth that needs immediate demystification right now, right here. This terrible mistake of a theory has most unjustly devastated the lives of untold autism families in the 1960s and still today.

Unforgettable (#204)

JPEGS and other image files eat up a lot more memory than text files do, as Jim discovered when he was transferring digitized versions of some old slides from his hard drive to a flash drive that soon reached its storage capacity. (We went to Target for another drive.) The slides (which Jim uses in teaching his course on the Formation of Modern American Culture) are of now-iconic images that stay in your mind: Chuck Berry and his guitar, the Kent State shootings, Nixon and Elvis shaking hands, the 1968 Summer Olympics in Mexico City.

At 7.15am this morning, Charlie saw an image that reminded him of something he would, we realize more and more, like to forget.

It was my first day back teaching after the month-long break between the semesters. I was rushing to cut a green apple for Charlie's lunch, review my notes for a new class, find Charlie's hat and vest. I put on the brown sweater and tweed skirt I often wear for work.

Charlie had woken up before 7am and was sitting on the blue couch, half-wrapped in Daddy's blue blanket. He had requested "Mommy stairs" but I can no longer carry him down. I draped his blanket round his shoulders: "Mom's going to go down first." Charlie stared out the window at our snowy backyard before clomping down.

I was getting some coffee when I heard it.

Thump, thump, thump, thump.

Charlie, Charlie, Charlie, my head cried as I ran from the kitchen and there was loudness and tears and, finally, a big, big hug. And a grinning boy running over the icy grass to his schoolbus: "Bye Mommy!"

One glimpse in the mirror before heading out the door and I remembered how often must Charlie have waved "bye!" to me in this sweater and skirt before walking into his old school, and before the school nurse called.

Keep on Smiling (#196)

"Put away your coat and backpack!" Nothing too unusual about that phrase, especially when said to a schoolboy on arriving off the bus.

On hearing that phrase on this Monday morning, Charlie attempted to (and did not) head bang and cried. He did well the rest of the day; his teacher is planning on moving him on to earning two tokens for every one reinforcement item (i.e., he will be on a 2:1 ratio of tokens to reinforcement). After school, he was kind of glum getting off the bus and, when I asked him "put away your coat on the chair!", the same thing happened (well, just a little cry).

I stepped forward, paused, repeated my request and, half moaning, Charlie picked the coat up and set it on a chair. "Thank you!" I rushed to smile. Charlie perked up after a fast-paced ABA session and a half-hour of OT. Determined to make the most of every therapy opportunity, I said to the OT, "We'd like to concentrate on his fine-motor skills--work on writing, perhaps."

The OT started to stay something then turned to asking Charlie to "pull!" on a colored cord as he swung on a platform swing. Be encouraging, everyone has to be pulling for Charlie, I reminded myself as he jumped into a huge white bag of foam pieces for fifteen minutes. "Charlie," said the OT, "let's go to the small room."

She had him sit at a table and write his name, draw a circle and a line. Charlie looked out the corner of his eyes until I repeated the OT's requests. The OT drew a circle, a half-oval, three dots for the eyes and nose. "You do that!" Charlie stared towards the wall, Charlie regrasped the pencil, Charlie s-l-o-w-l-y made a floppy circle and the eyes and nose.

The OT and I clapped and cheered and smiled and smiled as Charlie meekly sat. "It's the first time I've seen him draw a face," I told her. "He's really connecting tonight," she nodded back. I noted that Charlie has been in his new school for a month; he still has a lot to learn, but he is on the right path.

Charlieman vs. the Evil Stim Monster (#176)

It's a bird, it's a plane, it's a hero-Not Otherwise Specified!----it's a tall boy in a fleece vest and hat pulled nearly over his eyes running up his grandparents' stairs hollering "Portia doggy I want Portia doggy!" and throwing himself on their couch.

I doubt if my kindly father-in-law was thinking about Superman when Charlie ran, unannounced, into his house this evening. (I was slow to follow because Charlie had hit the button for the automatic garage door and I was briefly locked out.) Charlie's ABA session was cancelled because his therapist was sick and, after a hurried present-wrapping session, he and I made the forty-minute ride to his grandparents, who were expecting Charlie's Aunt Kathy and her kids to visit, along with their dog, Portia.

After a hard-working day at school (I know; I visited this morning and observed a well-focused, cheerful Charlie sitting opposite his teacher), Charlie was glad to slump in the back seat and listen to the CD player. Within three blocks of my in-laws' house, he began a whine that became a scream: "I want Portia Portia doggy! Doggy!"

My in-laws' driveway was empty and dark: Charlie's aunt was unable to visit due to the transit strike. Charlie kept screaming for the dog and just kept screaming.

Could Charlieman overcome the Evil Stim Monster and leave his grandparents smiling?