Posted by: autismland | May 29, 2007

Update (#616)

Long time, no post here, I know……… Now that I have finished my spring semester teaching (and I have some weeks to go before teaching summer school) I am working on “the Charlie book,” and very happily. Thanks to all who have sent me some wonderful, wonderful emails and to everyone for reading here about Charlie! He has been doing really well. I will be revising and redesigning this website in the upcoming weeks. I am still writing fairly frequently about the continued adventures of Charlie over at Autism Vox. The posts that are specifically about Charlie can all be found if you click on the Charlisms category (and I just put one up about Charlie walking over the Brooklyn Bridge, That Makes 15 Miles: The Holiday Triathlon).

The Autismland journey continues……

Posted by: autismland | April 12, 2007

April 19, 8pm: Autism Mom-bloggers Reading in Brooklyn

Brooklyn Reading Works is pleased to present mom-bloggers, Autism’s Edges and Autismland on April 19th at 8 p.m. at The Old Stone House at Fifth Avenue between 3rd and 4th Streets.

KRISTINA CHEW, a classics professor, advocate, and mother writes a blog called AUTISMLAND as well as AUTISM VOX: “Finding out your child has autism is like the end of a love affair and the start of a new, lifelong, really beautiful relationship.” MOTHERS VOX, the nom-de-net of a mother, teacher, scholar and activist living in New York City, will read from her blog, AUTISM’S EDGES, on life, love, and learning at the edges of autism.

Posted by: autismland | April 6, 2007

Autismland gets 2 awards (#615)


Well I really don’t know what to say.
It has been a while—two months—-since I stopped writing here.

We’re still living well in Autismland: Most of Charlie’s days (most of Charlie’s moments) have been peaceful easy feeling and this blog has come to seem an online chronicle of how we got here, from there—-from days of behavior squalls, anger, earthquakes. The days have become rather straightforward: Jim puts Charlie on the bus; Charlie has full school days working at his reading and counting and (recently) learning to type and (also recently) doing yoga in Adaptive P.E.; Charlie runs off the bus; he does ABA; we go for a walk to train, practice piano, a car trip to the store or the library or (as yesterday) Target; there’s dinner, shower, looking at photos and listening to music together—all interlaced with small conversations about shapes, old toys (Farm Families in particular), therapists and their cars.

Today is a little different as Charlie has the day off for Good Friday; he is talking and playing games with his ABA therapist right now. He has been working on saying “piano” clearly (he tends to slur the first two vowels together) and I just heard him say it: “Piano.” He makes “special guest appearances” regularly at Autism Vox—you can find some of them if you click on the Teaching Strategies page or go to the Charlisms category.

I’m making a “special guest appearance” here as, in addition to all the good things Charlie has been doing, I’ve something to write about: Autismland has won 2 blog awards. Back in early March, Dick at The Life That Chose Me awarded me a Thinking Blogger Award. The award came right at the time that I had stopped posting at Autismland and I have been meaning to name 5 other bloggers who make me think—and they are:

  1. Whitterer on Autism. Ex-pat McEwen is raising three children (including 2 boys with autism) in Silicon Valley and writes of madcap moments in every corner of the house and sometimes “outside”—at the garden store—with some furry creatures—-with occasional mentions of her own childhood memories in the UK, a few dental adventures, and wry wisdom.
  2. Life in the New Republic. Lisa-Jedi’s son has Asperger’s and is learning Japanese, is mainstreamed in school, just got braces, knows his way with the computer—-while he and Charlie might seem very different as far as their skills, Lisa and I note more similarities than differences in our kids, wherever they are on the autism spectrum.
  3. Thanks to my “blog mentor,” Hsien Hsien Lei, I discovered Science Blogs and now check many of these regularly. I have not studied science since my first year of college: Understanding genetics, neuroscience, cognitive science, mathematics, and a lot more is not easy for this autism mother/literary critic/classics professor: As ever, my efforts to do my best by Charlie by learning about autism have impelled me to expand my horizons. (Once upon a long time ago, I did want to become a medical doctor…….)
  4. Eating With Your Anorexic. Laura Collins is a mom-activist who sees to dispel the myths associated with anorexia, bulimia, and other eating disorders. ED’s are brain disorders and Laura writes with spirit and passion about many issues that are familiar to parents of autistic children: genetics, treatment, dealing with doctors, “cause,” and more. Back in December, Laura noted that Autism Vox is “a blog that isn’t about eating disorders but you wish it was.”
  5. Autism’s Edges. Mothers Vox writes about life, love, and learning with her daughter, Sweet M, in posts that fuse cultural critique, M’s artwork and words, and reflections on “the diagnosis.” On April 19th at 8 p.m. at The Old Stone House at Fifth Avenue between 3rd and 4th Streets, MothersVox and I will be reading together for Brooklyn Reading Works.

I also must mention Processing in Parts, “an autistic perspective on life, rights, happiness, employment, and other aspects of existence” by Zilari; she has taken an “indefinite hiatus” from Processing in Parts and has left it as an archive—-and I thank her. Zilari’s observation on language, sensory processing, disability rights, and her own memories growing up autistic have taught me much.

And, this morning I found out that Autismland was named one of the Mother’s Day Central Top 100 Mom Blogs in the “health conditions” category.

And, as of yesterday, visitors to Autismland number over 100,000.


Thanks for reading! The story continues, and my account of it is now wound into the more topically-oriented posts of Autism Vox—-thanks for walking with us on this Autismland journey.

Posted by: autismland | February 24, 2007

The Story of Autismland (#614)

About two weeks ago—the day a winter storm coated the roads in ice and slush—my computer screen froze in the midst of loading my homepage. I tapped several combinations of keys to no avail—the keyboard seemed frozen, too—sighed, turned off the machine, waited a minute, and pushed the on/off button again. There was a slight metallic noise and the front light came on, and dimly glowed instead of its usual animated flashing. The screen was black, and blank.
I tried to turn the laptop on and off several more times, then shut it and put it back in its case, and dug out the Support and Service number for Apple.

Since Charlie and I both had a snow day I called Apple while he slept in. I followed instructions to insert the backup CD; I looked at a very black screen. “Let me see, there are some Apple stores in your zipcode range if you’d like to take it to the Genius Bar……..” said the voice of Tech Support.

I closed the laptop and cut to the quick—something I have learned to do from these past years in Autismland, for worse or for better: Do what has to be done now. Don’t even look at anyone who’s looking at you, and Charlie, and get yourselves out of there right now……... “I’d like to send it in, if that’s all right,” I said.

“Just a moment while I look something up………Be sure to back up all your files.” I heard Charlie talking. I told Tech Support that, as I could not even turn on the computer, I could not do that.

It took an extra day for the DHL box to arrive, due to the wintry conditions. On Monday morning, I handed the box over to the delivery man. I felt fortunate: My parents had bought Charlie a small white laptop over a year ago, and so I spent some days typing on Charlie’s computer and admiring the JigZone puzzles that appeared whenever I went to the homepage. I had put a number of photos from the past several years on this computer for Charlie; together, he and I watched a photo slideshow: Charlie on Jim’s shoulders by the railroad bridge in St. Paul. Me in what was once my favorite dress and smiling (I am actually holding a week-old Charlie in the photo, which only shows my face). Charlie at the beach as a 4 year old, a 5 year old with Jim’s best friend Mike, a 6 year old on Jim’s back, a 7 year old swimming on his own, an 8 year old holding on tightly to his boogie board, a 9 year old catching the crest of a wave. Birthday parties at the pool, holiday parties in his classrooms, bike rides galore in our old neighborhood. Walks in New York and Hoboken and rides home on the train. Watering the lawn, standing at the top of the slide, carrying the shopping basket. Barney, Goodnight Moon, the blue blanket. The faces of therapists and teachers present and past, walking hand in hand with my parents, Thanksgiving with Grandma and Grandpa and aunts and cousins. Charlie and Jim. Waiting for the school bus. —- And all to the tune of Jimi Hendrix, Desmond Dekker, and the Beatles. (Note to Mom-NOS: We just got Rubber Soul and after “You Won’t See Me,” Charlie was listening.)
What good times; what a good life it is, every day with Charlie.

It has been a great, great thing to share Charlie’s and our every day with you, from when I first signed onto Blogger back in June of 2005.

I began to write about Charlie online back then somewhat out of desperation. Charlie—who had done the full panoply of early intervention, intensive ABA, some biomedical treatments, speech therapy and OT etc., etc.—was not doing well at all. In writing about him online, I hoped that I might represent what Charlie did and who Charlie was—who he is—as honestly as I could, even when it was a terrible day. In the summer of 2005, terrible moments were happening regularly. Charlie had summer school from 8.30 – 12.30pm and, after getting another report of another tough day, Charlie and I would walk back to our old house and shut the door and try to get on with the rest of the day. After another mother said to me “I really feel sorry for you and your situation. I just had to say that,” and turned away—after the principal called me and demanded you must pick him up right now, he cannot be in the school like this—I felt (rightly or wrongly; it is what I felt) that what was being communicated was, We don’t want to have to see this. We don’t want to have to see this child suffer and bruise his own forehead. We feel terrible for you, but we do not need to see this.

After long conversations with Jim, I decided to post photos of Charlie online because I wanted to show that, terrible moments and all, here we were, with nothing to hide. Charlie was struggling (we were all struggling), but that did not mean that we had to become invisible.

And I wrote about Charlie, every day, and my blog about him became an unintended chronicle of our attempts to find the right school for Charlie. Not to cure him, not to recover him from autism, not to see him mainstreamed. Charlie’s days at his public school in our old town became more and more difficult, and on November 8, 2005 Jim and I took him out of his public school classroom for what turned out to be forever. My mother flew out from California to stay with him while we were at work and Charlie was homeschooled by our ABA therapists. Many meetings and phone calls (you can imagine the tone) with the school district followed.

In early December, Charlie was admitted into a small private autism school and slowly, slowly, things turned around. When the school closed forever in June of 2006, we moved into the basement of my in-laws’ house and—slowly, slowly again—settled into a new routine; a new life. In July of 2006, I felt that—with this, hopefully, final, move—it was time to stop writing every day about Charlie and to focus on the book I had always planned to write. I had started to write another autism blog, Autism Vox. I thought I would post about Charlie occasionally every week, add a special photo—but within one week, I was back to posting every day, as I realized that the story of Autismland was not quite over.

Fall came, Charlie went back to school, I went back to work teaching Latin and Greek to college students, Jim threw himself into organizing the October 27th autism and advocacy conference, Witness and Hope. The conference was a great day, and all the more so because Charlie was doing so good, at home, at school, and everywhere.

Charlie is doing good. He goes everywhere with us, and so is seen not only by the residents of our town in New Jersey, but also in Manhattan, all over New Jersey, in Philadelphia, at basketball games and movie theatres and wherever we might wish to go—wherever he might wish to go. When he and I go for walks, sometimes he walks in front and shows me the way: I do not have to hold his hand. Charlie is coming into his own, if he has not already.

And so I think it is time for me to step aside and leave the telling of Charlie’s life to Charlie himself.

I will still be writing regularly on Autism Vox and Charlie will be mentioned frequently there. But this daily account of his life, of our life, is going to stop here: Autismland will be the chronicle of a particular period in Charlie’s and our lives. I will be forever grateful that I was given the chance to tell you so much about him and our lives for these several months; your reading, your words, your support has sustained us through some difficult moments and has helped bring us to this new stage, this next phase, of life with Charlie. Everything I have written here on Autismland will stay as it is on the web, and I will be doing some organizing and reorganizing. And writing my book.

I feel wrenched to say good-bye to writing here, but I think that—based on what Charlie has been telling me, not always in words but simply by his determined requests for what he really wants, his understanding that he can play in the front yard but not leave it, his peaceful easy-feeling demeanor—-it is time for Charlie to do the talking about Charlie.

To my surprise, a box with my laptop in it was waiting for me on the table when I came home from work on Wednesday. When I took out the computer, something was very different. There was the same scratch on the bottom, but the keyboard was shiney, the monitor bright and unstreaked. I turned on the machine: Welcome to your new Mac OX system. When I got through all the start-up screens, I discovered that all of my files had been erased, as a new system had been installed. I had expected this. Knowing that most of the photos were those I have been posting online, that many of the originals of the files were attached to emails, and that anything related to my job was also on the computer in my office, I knew I had little to lose.
Except for the rough draft of the proposal for my book that I had been working on. It is completely gone. “It’s in your head,” Jim reassured me as I had said to him about his tapes.

And I hope to be able to show to you, sooner than later, that it indeed is in my head and coming, too, straight from the heart.

Thank you for more than I can say, in 100, 614, 1000 posts. Thanks for joining us on this journey, altogether in Autismland.

Thank you.

Posted by: autismland | February 23, 2007

The Translator (#613)

Translations, the play by Irish playwright Brian Friel that Jim and I saw on Tuesday night in Manhattan, takes place in 1833 in rural Ireland and, except for some phrases of Latin and Greek, is all in English. This might not seem to be anything special, until one considers that the majority of the play’s characters—all Irish villagers in the fictitious county of Ballybeg—are supposed to be speaking Gaelic. The event that sets the play’s plot into motion is the arrival of the British—-in the person of red-coated soldiers speaking the King’s English—to make a map of Ireland and to translate the Gaelic names of places, rivers, towns, into English.

Come back home to assist the British is Owen, the son of Hugh, the local schoolteacher who seems to divide his days between spouting forth short lessons in ancient Greek and Latin, in Homer and in Virgil, and drinking. Owen’s job is to translate, not only the names of the places of the Irish countryside into something more pronounceable, and orderly, but to be the go-between for the British and the Irish. And Friel’s play, and the actors on Tuesday night, were able to make it seem that both Gaelic and English were being spoken, though, of course, the only language spoken was English. In one scene, Owen stands at center stage while the British lieutenant Lancey speaks in all the august tones of officialese about the map, their taxes, the establishment of new national schools (where English only will be taught). A small group of young Irish listen, faces blank and feet bare, and look to Owen to translate the king’s edicts, and Owen (who, at this point in the play, is quite eager to please his employers) leave out a lot in the translation.

And even though everyone was speaking English, it seemed that they were not; that a translator was indeed in order—-however poor a job he did.

I was fascinated by this scene, which seemed a sort of allegory for what I speculate what might be Charlie’s experience of language. If “most people” are like Lancey, with his most proper and correct English, and if Charlie may be said to be like the Irish villagers, then I can see this scene from Translations as perhaps capturing how Charlie and other people are technically speaking the same language. But not only is the accent all different, the very vocabulary and the rhythms of speech and the way sentences are strung together are not at all the same. After that scene, it was only too easy to believe that both Gaelic and English were being spoken, just as people hear Charlie speaking the same language as them, but they do not understand what he (speaking the same language) is saying. And he (speaking the same language) does not understand what they are saying.

My parents took Charlie out to his favorite restaurant for brown noodles with shrimp tonight. I had mentioned to them beforehand about how Charlie likes to bring some of his noodles home in a take-out container, to eat later. Last time we went to the restaurant, Charlie asked neither for a box or a container to take his food home in; he put his hand on my arm, looked at me, said Mom. Not sure of what words Charlie might use—-who can predict what words any of us might choose to use at a given future moment?—-I thought I ought to provide a translation, just in case.

If (to refer back to Translations), Charlie is the Irish and people not attuned to his communication are the British, I guess that makes me like Owen. The translator.

Whose own future, by the end of the play, is not the same as it was at the beginning. A British soldier—last scene romancing an Irish woman—has disappeared in the night; Manus, Owen’s brother, hurries away with Virgil and Aeschylus in a saddlebag; it is raining but smoke—what could have been set on fire?—-rolls into the door of the dirt-floored schoolroom. Owen is called once more to translate the dicta of Lieutenant Lancey, which leave the Irish gasping and running to hide their herd animals. The translator leaves the book of new English placenames on the floor.

This time, the translation was much more accurate, and true.

Just as “brown noodles” has been only a partial approximation of this dish’s real name, “Thai noodles with peanut sauce and shrimp.”

Posted by: autismland | February 22, 2007

Time Off (#612)

I have been feeling guilty—–because Charlie hasn’t practised the piano since Monday. He has been spending his days with my parents (aquarium yesterday, train into New York today) while having the week off from school, and I have been spending extra time at work doing several small but suddenly urgent tasks that have piled up on both my desk and in the inbox of my email.

Of course, Charlie has had a break off from other things as well such as bike-riding (it’s all snow melting into slush and then freezing into ice overnight out there)—but he only has to hoist himself up on his bike and, as I watch, he seems instantly to remember how to balance himself and pedal. I think I can trust that his fingers will not forget how to play Ode to Joy and the spinning song.

When Charlie was younger—and doing intensive ABA—I used to worry about him having “time off” during holidays and late in August when everyone seemed to be on vacation. Would he still remember the skills—the numbers, the receptive language programs, building with blocks—that we had taught him so painstakingly, session by session? And indeed, sometimes it did seem that he did forget things and we were often in a pattern of teach-learn-break-forget, teach-learn-break-forget, teach-learn-break…… It was the same fear that used to drive me to do “some Latin and Greek” everyday when I was in high school, lest I forget.

I don’t remember when I stopped that every day study; I do know that I have had long periods of not looking at any Greek or Latin (such as, when Charlie was 4 until he was almost 8) and if you asked to me to teach a Latin class right now, I would be quite ready.

And I suspect that is how easily Charlie will resume playing the piano, and riding his bike (and, come June, swimming in the ocean waves).

Time off is time well spent, too.

Posted by: autismland | February 21, 2007

One Day At a Time (#611)

When one parent of autistic child meets another parent of an autistic child, there is an instant bond. You and the other parent may have very different, and even opposing, views on things—on what treatments work best (ABA? Floortime? biomedical?) and on what the cause of autism is (genes? vaccines?), and maybe if you sit down and start talking about these things, you will start to disagree, maybe even to argue. But that feeling of shared experience—of having walked a road different from what you may have been expecting—of knowing you do not have to explain what “sensory needs” are or what “apraxia” is, or why it is not easy just to “run to the grocery store”—persists. You have been through something a little different and, while you do not necessarily want to go and tell the whole world about what this has been like, there is a sense of relief to be able to talk to someone who knows the language of Autismland.

“My child does too.”

That phrase has come to mean more to me than almost any other. I have heard it while opening my mouth wide and leaning back in the dentist chair (making it a little difficult to say a fast “really?”). I have heard it while standing in line with another new faculty member at the college where I teach; we were waiting to get our ID cards and the subject of “do you have children?” had come up. I heard it last summer when I saw a little girl running down the sand, unaccompanied, and I called out to her mother. I heard it from two people I had chanced to sit down for breakfast with, a few years ago at an academic conference.

I rarely go to conferences anymore and “travel” means “travels with Charlie,” to the beach, to see my family in California. It was when Charlie was much younger—just diagnosed—that I went regularly to support groups for parents of autistic children and made elaborate childcare arrangements to attend workshops about the latest new treatment or therapy or technique as well as lectures about the most recent developments in research about autism. And while I came away from these with folders of Powerpoint handouts, lists of books and websites, and pages of scrawled notes, what meant the most to me—what I hurried to talk to Jim about—was what I had talked about with other parents, whose emails I had been careful to write down and save.

Cyberspace exchanges have indeed become the main way that I have been able to stay in touch, and feel community, with other parents of autistic children. I exchange emails with other parents of autistic children throughout the day, and check blogs by parents and by autistic writers daily. Sure I would like very much to sit down in a cafĂ© with a good cup of coffee and have a real, face to face, talk with another parent. I would like to have a conversation, make eye contact, share some laughs and pretend not to notice a tear (his or hers, or mine), part with a grasp of the hand or an embrace of fellowship. Maybe I will someday; as it is, I feel very lucky to be able to sit in my office at Saint Peter’s College in Jersey City directly across from lower Manhattan (which I could see from my window, but there is a dormitory inbetween). I feel grateful to know that, while Charlie needs me to be home to attend to those routine parts of his day—piano practice, dinner, just sitting together, bedtime—he does not need me with him every single moment of the day. He likes school; he likes to spend time with my parents when they visit from California.

And why should he not? Charlie will be ten in a few months, and how I used to fear this. Ten years old——the big one-zero—-the double digits—–adolescence, adulthood, the end of school, are just around the corner……... So I thought, thinking catastrophically (as some parents of autistic children have the tendency to do).

But a funny thing happened on the way to Charlie becoming ten. Maybe it is not exactly funny, but I do have to laugh at myself, so full of fears about tomorrow, about “what if Charlie never…..” and about “what will we do when…..,” and about other worries that constantly bobbed about in my mind. Sometime in the past two years—maybe in the past couple of months—-the fears and worries started to fade and even to disappear. Sometime in the past two years, I started not only to embrace but to live the oft-stated mantra of “one day at a time.”

I have been writing about Charlie in my journal since before he was born; I should rather call it “my journals,” as I have a box of a dozen or so notebooks now filled with the facts of Charlie’s life. Many of these facts I have also written about publicly since June of 2005, when I started writing about Charlie online on My Son Has Autism. From June 2005 to today, February 21, 2007, has been an interesting time in my life and, in my view, in Charlie’s, as these months have been the period of his having serious troubles at school, of us removing him from school, and of the search for a new school; of us moving into my in-laws’ basement, as the school district in their town had (we then hoped) the right kind of autism program for Charlie; of Charlie settling into his new school and, if I may so, a new phase in his young life.

I have no idea what the next phase (not the right word, perhaps—-I am not sure if Charlie sees it this way, but that is my mother’s perspective) will hold. I have had glimpses from meeting—mostly online, sometimes in person—autistic adults: Kassiane of The Rett Devil’s Rants. Zilari of Processing in Parts. Laurentius Rex of in regione caecorum rex est luscus . Amanda Baggs of Ballastexistenz. Autism Diva on Autism Diva. Joe on NTs Are Weird. And many others.

When the parent of an autistic child meets an autistic adult—when this mother of an autistic son meets an autistic adult—-she has an awful lot of questions and (in my case) she sees that it is indeed she herself who has started a new phase of her journey. And the good thing is, thanks to everyone she has so far met—autistic persons, children, adults, teenages; teachers, therapists, doctors, nurses; parents of autistic children—she has a map (unfinished at the edges) to help her find her way on this next stage.

Meanwhile, Charlie has already begun a journey all his own.

Posted by: autismland | February 21, 2007

Translations (#610)

The curtain rose to reveal a man and a woman sitting opposite each other and very close as he moved his lips in exaggerated fashion and said "Say ‘my—-name—-is—–Sarah.’" At first only sounds came from her mouth, and as he repeated his words the lights slowly revealed the dirt floor, the broken-banistered stair case, the low wooden stools and benches, the old man in raggedy clothing sitting beside the fireplace and holding a book. After several minutes of long slurs of vowels and random consonants, the woman said,
"My—-name—-is—–Sarah." And the man’s face lit up and he clasped her hands in joy.

This was the opening scene of the play Jim and I saw tonight, Translations by the Irish playwright Brian Friel. The man is Manus, a school teacher (and Irish nationalist); the woman is Sarah, whose lack of speech is not fully explained but has many metaphorical resonances in a play that is set in rural Ireland in 1833 and that "explores the troubled lives of a handful of characters struggling to adjust to the shifting dynamics of the world around them, which is undergoing quiet but radical change as the hard fist of British regulation seeks to impose itself on local tradition."

Charlie, off from school for a week, spent the day with my parents at the mall, on walks, at the grocery store where he put a container of olive bruschetta—he said "hummus"—into the cart. "What does he mean by that?" my parents asked me. "Hummus means sauce, in a jar," I said.

And if I had not spent the past 9 and 3/4 years with Charlie, I do not think that opening scene of Translations would have had the same familiarity for me, or the same power. 

Posted by: autismland | February 19, 2007

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.

Posted by: autismland | February 18, 2007

Map to Trains (#608)

Blue blanket, three squishy sensory pillows in green and blue, a toy snowman, the CHARLIE book, green squishy ball, a miniature pair of flip-flops belonging to a stuffed bear, an old pair of my flip-flops, two blue shirts of Jim’s, photo calendar of February, daily picture schedule, 4 smaller fleece blankets in a pile:
To this collection of things on (or nearby) his bed, Charlie added a train schedule tonight—something about the way the one sheet of paper can be folded up, accordion-like, into a neat rectangle, appeals. And then there are the associations of this piece of paper, covered in numbers and a list of places familiar to Charlie from the many train rides we have taken, not to mention the now-familiar sight of Jim standing on a train platform consulting this interesting document, a kind of Map to Trains.

As if casting off on a ship fully loaded with a most precious cargo of so many favorite things, Charlie settled down to sleep tightly wrapped in his blue blanket. His morning had been spotted with anxiety on hearing that his aunt and uncle, owners of the dog Charlie prefers not to see, were visiting. A walk started out cheerfully with Charlie stamping out piles of snow, only to end with him pacing and saying “no” at the far end of the driveway when he detected their car parked in front of the house. Charlie asked for his teachers and I mentioned about him having the next week off, and that my parents are coming on Monday: More cries and worries, me insisting on him coming into the house, cries and worries and Charlie taking off his coat and then putting out his snowboots and standing in the driveway until his aunt and uncle (“good bye!” said Charlie) took Grandma and Grandpa out for lunch.

With so much disruption in the usual, pleasant routine of things, no wonder Charlie has been gathering so many favorite things around him. If I find myself driving to work without my coffee, my bag, and the particular contents of my bag—textbooks, a folder of papers and quizzes, my datebook, wallet, driver’s license, credit cards, library cards, insurance cards, cell phone, pens, iPod, laptop, keys, a photo of Charlie, more—something does not feel quite right. (I have turned around for the cell phone; I have to grin and bear it if I don’t have the coffee.) Not that I need it all, but it feels like I do.

Not that Charlie needs an NJ Transit schedule to navigate through the night. Even when you kind of know where you are going, it is still good to take along a map, just in case you lose your way.

Older Posts »