We Go With Him

Book Thinking

I am having too much fun, and obviously staying up too late, considering what books to buy Charlie.

i found some glorious pop-ups and the 3-d-ness is appealing but he tears paper in some anxious moments (happened on Friday) and I could see all the color and shape and cleverness being too much. R.i.p

Generally I keep returning to books that are heavy on the colors, simple shapes (sometimes of a bit of a mod sort) and minimal on the words and story. I'm not sure if an alphabet book would be called for but maybe.

Back to reading (for Charlie and Jim's Xmas present).

 

One Good Read Deserves Another

 

Merry Christmas if that is what you celebrate in these ecumenical times! -- Charlie having soundly conked out in the middle of the day after the 50-whatever miles from the weekend, three fight-or-flight runs on Sunday and four walks at a more normalized pace, one walk and a brisk winter's day ride Monday -- he is grinning over our all-time favorite reading of the Gingerbread Boy (via the Teletubbies) on his iPad and I'm reading quarters, eighths and paragraphs of reviews on the London Review of Books site as I don't have a subscription, all to get ready (without really trying to) to enter the different world of the Romans, Carthago, Pontus on the Euxine Sea, Alexandria, come spring semester 2013.

It snowed but not much and only stuck to the grass and sidewalk and not the street.

After the morning bike ride we purchased a fair amount of better-quality fast food including some pizza from the newest pizza place in our modest Jersey town. Jim dubbed it fair and his opinion shall stand as we are perhaps the rare American household in which pizza eaters are a minority. (In Charlie's case, another side effect of years eating gluten-free and casein-free; soy rice crust pizzas were presented and turned down by all.)

Charlie and Jim did a second bike ride in mid-afternoon and definitely needed their bike lights.

I arranged a pile of gifts on what used to be the TV stand, topping it off with the latest set of 'first readers' we have gotten for Charlie. I haven't yet felt it was the right, fleeting moment to read one to him! A goal during this week-plus of break, clearly.

There was a lot of lounging, sorely needed by Jim as he'd accompanied Charlie on every wheel turn and foot run of Sunday and by Charlie himself too though, due to that deep nap, he is wide awake at 2.15 am and, from the sounds of things, not unhappy.

Me (with a veritable pile of reading, actual paper kind) either.

 

When Life Gives You Watermelon (Take 2)

Charlie say on the blue couch next to me at 10.45pm and asked for something to drink and some crackers. We did type B ocean and he was quite interested when I read him a book about a yellow schoolbus and inattentive and edgy when I read two pages of One Fish Two Fish Red Fish Blue and some nursery rhymes.

(Hint, hint.)

My parents went up to bed just before midnight and Charlie sat sort of staring and then said 'bedtime.' First, though, he pulled up the music on his iPad and looked carefully over the colored squares of albums, six across.

He fell asleep without getting undressed.

At 2.15am I heard thumps and recalled all the watermelon he had eaten and all that he'd drank. After carrying out the things that were necessary, he went right back to bed. I praised him and turned out the light. He went back to sleep.

That is growing up.

The More Talk About Poetry and Autism, The Better

I really wanted to go into New York on Wednesday to attend this autism symposium as a friend was speaking and the program looked intriguing. I thought of rescheduling the Latin tutorial I have on Wednesday morning but decided not to as I had recently done that when Charlie was on spring break. As things turned out, only half the class (i.e., one student) showed up.

It only rains and it pours: Thursday, I went with Jim into New York and, over lunch, had a tremendous talk with Patricia, Katy and Kristen of Easter Seals.

We got back in good time before Charlie's bus. After an eagerly called for bike ride, I went to hear Priscilla Gilman read from her book The Anti-Romantic Child and found myself thinking about autism, poetry and my two favorite Romantic authors, John Keats and Heinrich von Kleist, and time and lyric poetry and the sublime and beauty. And, about the happy coincidence of Autism Awareness/Acceptance Month and National Poetry Month.

Jim has referred to Charlie on his bike as 'poetry in motion.'

With all this ferment of activity, Charlie is still awake with 2am nearing. He can (I feel sure) sense how today was very different, full of too many good ideas and great talk, much of it centered upon no one less than himself.

 

27 Miles (Literally & Otherwise)

 

Sunday morning, Jim and Charlie biked 11 miles with an uphill start in Jersey horse country under a gray sky. In the afternoon, they did 16 more only this time, the gray sky became a steady rain. They were past the half-ride mark and Jim did some improvising so they wouldn't have to walk their bikes over the old iron (and not terribly wide) bridge.

Also this weekend, I finally got myself to write reviews of some books by parents of autistic children.

I'm ready to sit on the couch and read a book (not about autism, though).

Charlie himself is still up as the clock turns past midnight.

Storm and Clean-up

The majority of the books you see are mine. They have been stacked in piles in a corner of our dining room since April, when Charlie got it into his head that all the bookshelves must come down. Jim has been enjoining me to go through the books and take out the ones I need so he can pack away the rest for the basement and we can reclaim a quarter of the dining room. I have been waffling and then, on Wednesday afternoon, Charlie, mad (understandably) that we had removed most of the 'blue Disney' album he has been excessively, obsessively, and only listening to for what seems like weeks -- and also not pleased by a trifecta of no dad home, Thursday off for Rosh Hashanah and ongoing days of wet weather -- threw his iPad, cleared tables, scattered the book piles, threw plastic containers.

Yes, our house is still furnished in such a way that a boy in a behavior storm can storm in, with mess created but that's about it.

Charlie stood for a long time, unmoving. I said something about him helping to pick things up 'when he was ready.'

After several minutes, he got his iPad and sat staring at it on the couch, then played one song, Paul Westerberg singing 'Born For Me.'

Then he got up and picked up some things and we restored the house to order together with one bonus: I finally weeded out the books I want to keep upstairs, and those due for boxing, and the basement.

 

In Memoriam Clara Claiborne Park

There's a little memorial to a mother of a child on the autism spectrum, Clara Claiborne Park, over at Care2.com by me. Park's 2002 book, Exiting Nirvana: A Daughter's Life with Autism is one of my favorites; her first book, The Siege: The First Eight Years of an Autistic Child, was published in 1967, one of the first (if not the very first) accounts by a mother raising an autistic child at home. Charlie was just being diagnosed back in 1999 when Jim and I caught a segment on autism on some Oliver Sacks documentary. Clara Claiborne Park and her husband, a physics professor at Williams College, were interviewed, as was their youngest daughter, Jessica. I remember seeing the Parks walking around the town, Williamstown, where they lived and Jessica Park's paintings of their house and many buildings around it and felt a little frisson. 

Just five years prior, I had lived in Williamstown, on Route 7 which (I think) was referred to as Jessica Park's favorite route. I'd won a dissertation fellowship and was, indeed, finishing working on it, and applying for academic jobs, mostly in the Midwest. I'd met Jim that year (1994) and he was in his first year in a new position himself, at Saint Louis University in St. Louis, Missouri. I'm sure I saw Jessica Park working at her job in the faculty mailroom in Stetson Hall, and that I walked past the Parks' house several times. 

Yes, it was a different time. And yet---yet, over the years, I've taken much comfort in thinking I was living in such close proximity to the Parks and to the small Massachusetts town that has been home for all of Jessica Park's life. In my mind's eye, I'm still often walking up and down the hills and down to the town's very quaint main street. I remember waiting in line at the bank and seeing a man with a 3-year-old boy leaning against his father's legs and thinking about how Jim would like to have a little guy (or gal) hanging around with him.

It's all a world away now. We've been once to Williamstown to Charlie but he's not a mountain kind of guy, needing rather the expansiveness of the ocean and, of course, all that water. But the little town and the Berkshires and the brick buildings (if you're thinking 'New England college,' Williams is quintessentially it) are imprinted on my mind. 

One thing I always liked about The Siege was the feel in its pages of how slowly time passed, how many of Jessy's days (and her mother's) moved at the same pace as ours, really slowly with not much happening. Well, of course things were happening, just they tended to be the same things over and over, or just variations on them. So it is in our life with Charlie:

Walks, bike rides. Videos on the computer. Music on the computer. Rides in the white car to convenience stores. Rides in the white car to school. Rides in the white car to the beach. Swimming in the ocean. Sushi. For punctuation, the very occasional plucking at the bass guitar. McDonalds. Bedtime, at some point or other. Trips to go grocery shopping.

But wait a minute. Trips to the grocery store with Charlie 'n' me were a routine occurrence once prior to a major mishap at one store over a red box of brownie mix. We just haven't gone to supermarkets at all.

Thursday, Charlie asked to get sushi and so he and I went.

He'd had a good day, even with adjustments. His teacher had asked that he wear a swimsuit to school so they could swim at 9.30am. Charlie indeed wore one and then it turned out that they weren't able to go swimming at all; he was unruffled. He took a long nap in the late afternoon and was ready for his usual 10-mile bike ride with Jim afterwards. And then, the request for the white car, and the sushi.

Due to the aforementioned still-recent past event and some others, I was a little dubious and texted Jim so he'd know where we were. Charlie smiled as we went into the store and got a shopping basket. What should I hear but the voice of Chuck Berry rockin' and a-rollin'---just what we 'needed'; Charlie has, in the past, had some 'interesting' reactions to hearing old Chuck on CDs in the car. 

Charlie found his way to the sushi section, where only three packs of brown rice sushi remained. He looked for a moment; I shrugged. He moved down the aisle and a got a pack of watermelon and then a container of vanilla soy ice cream. I also got a big watermelon (why not; it was less than $3.00 and we were there). I asked the clerk if there might be any sushi in the back storerooms and there wasn't. And Charlie and I went back to the car and drove home.

It was very mundane.

I felt extremely pleased but didn't mention it to Charlie who settled back down to using the computer at home, and then asked for, you guessed it, a walk.

Somewhere in Exiting Nirvana, Park writes about how, over the years, she put notes and jottings on paper, bits of this and that---all about her daughter---into an old suitcase. She drew on all these small saved recollections, thoughts, observations, in writing her second book. Exiting Nirvana is not a long book, especially when you consider how many years----Jessica Park is 51 now---it covers. I like to think that book is an excellent distillation of all those bits from Park's suitcase; the essence of her experience with her daughter; the essentials. 

With all my blogging day in and day out about Charlie (since June of 2005), I have the equivalent of several suitcases of notes, plus I still write in a journal (an actual notebook with paper). I have a lot to distill. But I keep returning to that image of Park sifting through those bits she'd saved in that suitcase over so many years. 

Life with Charlie has, I must say, graced us with a cargo we weren't exactly expecting and whose contents we've yet to fully unload and unpack. There's lots of good stuff yet in store---along with, most likely, a few items of uncertain provenance and dubious scent, though not just any old load of bananas---amid the crumpled bits and paper documents.

A bit about motherhood

I told Charlie I'd post a photo of my every day on my blog and am afraid I haven't done that due to technology/internet-access issues (some of the hotels we're at have only one computer with internet for everyone). Here I am standing beneath the Lion Gate in Mykines, which we visited on Saturday, March 13th.

I've been reading Vicki Forman's This Lovely Life: A Memoir of Premature Motherhood. I started reading the book on the plane ride from New York to Athens and it's hard to know where to start writing about such a beautiful, sad, affirming, loving book. Vicki writes so clearly and so gracefully about Evan and Ellie, who were born weighing just a pound at 23 weeks' gestation. What to say about Ellie dying at 4 days old? About the long hospital stay and the five surgeries for Evan, a child with multiple disabilities, before he came home? About Evan passing on, on July 24, 2008. 

I need to finish This Lovely Life before saying much more. Except this: Motherhood---and how much more, mothering a child with many, many challenges---certainly takes us all on roads we never could have imagined, much less thought we'd be walking on. It requires courage and fortitude. It often comes with tears. It often feels like the days are harder and triumphs so very few, and it's not like we have arms like this shield, adorned with the head of Medusa, and once carried by a hoplite soldier:

Mostly what I feel we have is love and an awful lot of patience, perseverance, and some instinct that tells us, gotta do all we can do to keep this child going. No matter what it is we have to do, no matter what our own situation, or where we are.

Jim gave Charlie the phone when I called yesterday. I heard Charlie first saying "no" when Jim asked him about talking. Charlie did come to the phone and gave me a succinct "hi mom."

All this mother needed to hear.

Goings On: New DSQ on neurodiversity and a few more words from Charlie

Variations of the above scene---Charlie in fine run/walk form round our neighborhood---occurred morning (6am), afternoon (3.30pm), and night (8pm) on Monday, with Jim bringing up the rear. 

6am walk following a 5am wake-up (an early, but manageable, start, relatively speaking). 3.30pm after a good day at school. 8pm as a little night sortie seems much to agree with Charlie.

Not a ton else happened yesterday, which is very well by me. One thing of note: The publication of volume 30, no. 1, of Disability Studies Quarterly, on "Autism and the Concept of Neurodiversity". More than a few friends have essays in this issue. Mine is on The Disabled Speech of Asian Americans: Silence and Autism in Lois-Ann Yamanaka's Father of the Four Passages and I'm looking forward to reading, and writing, about the volume. Stay tuned.

While I was coming home from work on the train, Charlie used Jim's laptop to watch videos, a small bit of preparation for when I go to on a trip aboard with some students (it's happening in less than a month---!!!?!!!?!---I already miss my two guys). I've made up a calendar for Charlie showing when I'll be gone and---something that Charlie seems to be more concerned about, at the moment---when my parents are coming back, a few days before I leave. 

Indeed, Charlie's been talking quite a bit about Gong Gong and Po Po "coming soon." 

To which, yesterday in the car, I said: "Yes, they're coming in 15 days and they're going to stay with you and Dad while I go to......."

"Greece," said Charlie.

I guess that means I'm really going.

Gravity

It's here!

Gravity Pulls You In: Perspectives on Parenting Children on the Autism Spectrum, edited by Kyra Anderson and Vicki Forman, just published by Woodbine Press. And containing the writing of many parents, some of whom I've had the good fortune actually to meet and share a meal with (Vicki herself, Bruce Mills---we've met his wife and children Sara and Jacob too, Ralph Savarese, MothersVox, Kristen Spina, Barbara Crooker).

I've yet to meet Kyra in person. And also Mary, Christine, Emily, and many others. I've been very fortunate to get to know these parents and their families through their writings and, in many cases, through their blogs. Mary's blog was one of the first I read when I started blogging back in June of 2005 and I still remember the little frisson I felt on reading about her boy Bud and thinking, a mom like me! and she writes about it!. And then a long day  seemed less so, even though it was but 3.00pm and Charlie and I had already done summer school, a trip to the store, a trip to the playground, a trip to the pool and were now relieved to be back in the safe, if isolating, confines of our house.

Wanting, needing, to reach out to other families who have a child like Charlie, to individuals on the spectrum, and sharing stories about our long road of a life with our boy: That's why I got started blogging. A few too many posts on vaccines aside, it's remained why I keep writing here.

I want to write more about all the writing in Gravity Pulls You In, once I read through and reflect on all the pieces. A quick read here and there has revealed many sparks, many experiences that I know will ring too true with ours. My little piece is entitled "The Wages of Autism" and is stitched together from some of my favorite posts on my old "Autismland" blog, "The Wages of Autism," "Autism Hearts Club," "Ache." As you can gather from those titles, it's an essay about love and loss, and about the curious currency a parent finds herself gifted with in raising a child who, like Charlie, is different. 

Valentine's Day having just passed, it seems more than appropriate that I just got my copy of Gravity Pulls You In. I reference "love of the Valentine's Day sort" at the start of my essay, in the context of an Intermediate Latin class I taught in the spring of 2006. There were only three students, all female, in that class, and our translating of one of Cicero's orations on the Catilinarian conspiracy de-, or rather e-, volved into a musing on the god the ancient poet Sappho called "Eros the Bittersweet." 

Life raising a child with as many challenges as Charlie can indeed be  "bittersweet," tinged with moments too lovely and beautiful, and others that are pretty, very difficult. I wish some things---many things---could have been easier for Charlie. Wish we could figure out how to quell the neurological stormsin his head more quickly, more effectively. Wish he'd hit puberty laterather than early and been a skinny guy who Jim could still piggy back in the odd moment. 

But we never, ever, wish for a boy other than Charlie to call our son. 

It's been four years since I wrote the blog posts that became my essay. We live again in the house in which I wrote them. Charlie goes to a different school----a "separate" school, for autistic children---now. He's almost as tall as Jim.

After snow days and a long weekend, the three of us were not happy to find it snowing Monday night and Tuesday morning. But no text declaring "school is closed" appeared on my phone and so up to the Big Autism Center we headed at 8am. Jim's figured out a new route that avoids a major road-work-traffic-jam-creating-snarl; now we drive through some woody hills. Thanks to said snow, it was something of a winter wonderland, the tree branches trimmed in fresh snow. Charlie was already glowing at the prospect of School! and he remained that way on telling us "this way, this way," as drove into the school's (large) parking lot. An aide who's not in Charlie's class appeared and asked if it was ok for him to take Charlie to his room and Charlie went right in. 

Great day, with a random yelp here or there---something new Charlie's been doing, that (we hope) is serving as an occasional "replacement behavior" for other ways to express his pent-up feelings. After school, we shopped, went to Walgreen's, walked (Charlie really wanted to snack first, but he ended up being fine getting in some exercise beforehand). He told me "dad here, dad here" when I explained Jim had to work late in his office. My own mind was swimming amid planning an information session on scholarships for Thursday, more preparations (like insurance and passports) for the Greece trip and a meeting with students (today), a recommendation to write. And then Charlie, after taking himself to bed at 7pm, wanted a walk at 8.15pm.

It was cold and windy walking across the snow-packed field and the word gravity, gravity, kept entering my thoughts.

..... [Gravity] does pull you in, not just to the center of the earth, but to the center of yourself, if you let it. (p. xiv)

as Kyra wrote in her Preface.

This low-gravity parenting journey has me floating in space, sometimes feeling light years away from the known or the familiar. And yet, as I move into the vast expanse before me, I only need to look to Bud for a cue to reorient and realign my orbit....... (p. 82)

as Mom-NOS writes in "Live via Satellite: A Parenting Journey."

How grounded we are because we're on this long road with Charlie, Jim and I know, down to the soles of our shoes all snowy and muddy from round-the-clock walks. How, too, glad we are to have this grounding. Often when I'm so tired I don't think I can do one more thing, knowing I need to be there for Charlie, knowing Jim's always ready to spring up to go out with Charlie, I find I have veins of energy I hadn't known I could tap into.

The three students I wrote about in "The Wages of Autism" are gone from my college, one having transferred after only a year;  one now in graduate school; one teaching full-time and engaged. Yesterday morning I was teaching another Intermediate Latin class, with three students (one young woman, two young men). I had asked how the long weekend had been. "Over," said one student and we all opened our books to the story of Orpheus and Eurydice as told by the Roman poet Ovid in his Metamorphoses. 

We paused over a sentence with the word gravior, the comparative degree form of gravis, "serious, heavy, weighty," the students noted the definitions. 

"But it's comparative so that means it's.....," I said.

"Graver," one student (the student who'd said "over") answered, almost under his breath.

"So heavier, serious-er," said another student, as she wrote in her notebook.

"Yes, and weightier," I said. "More weighty."

Yes, being the mother of a child like Charlie does mean life is gravior for me than in the days when I first read Ovid, and Cicero, and Sappho, and worried about not having a date on Valentine's Day or the calculus test tomorrow. 

And the strange and lovely thing is, this gravior life rests lighter on our shoulders. Even when the ground shakes, we know how to shift our weight to sway so that, while we may fall a little, we're still standing.