on the road with our son Charlie in Autismland
I finished my essay and am in the midst of writing a short piece for something else----Charlie went back to school after the holiday without fuss or muss; called, as usual, for two bike rides and a walk (the weather's been lovely and outside is the place to be); said 'Mexican' on his own so clearly that who could resist taking him to get a burrito?
Not us, for sure.
We got gas and went to the bank before getting an early lunch Thursday morning, and then Charlie---off from school for Rosh Hashanah (he'd indicated his awareness of this Wednesday night when he stayed up extra late; he wasn't perturbed when I wrote 'home for a holiday today' on his iPad using DoodleBuddy; I think Charlie is already associating his iPad with schedules and such and he looked very intently at the purply words I wrote and speedily, digitally, erased)---Charlie paced and hung out in our front yard until, bikes loaded on the rack, we drove to the train station to get Jim, who, on the ride out to their favorite bike path in Jersey horse country, regaled us not with tales of fashionistas on the prowl (Jim teaches near Lincoln Center, which is where Fashion Week is taking place as I type this and you read it) but with why Walker Percy's family brought Chinese post-the-Transcontinental-Railroad workers and then Italians to Mississippi.
On the bike trail, the wind came and went and you could sense that autumn-coming-and-then-winter chill already in the air---lovely bike riding conditions, and Jim and Charlie did 24 miles.
I have a feeling they'll be breaking that and, before too long, that will seem like ye average bike ride rather than the historical event 23 miles so recently did.
This post is much shorter than average for me as I've got to put the finishing touches on an essay I'm calling 'Autism and the Task of the Translator' for the upcoming Critical Autism Studies Workshop in Ottawa.
I will note that all these long and longer bike rides have been translating into one peaceful easy-feeling boy.
The carnival was very crowded, for Friday was the last night; I had time to get two (ridiculously overpriced) cans of diet Coke while Jim and Charlie stood in line. It was dark and everything was lit up and I was thankful Charlie was wearing an orange shirt, as this made it easy to spot him amid the masses of people.
We'd known this wouldn't be a night like those we'd had earlier in the week when we encountered a flashing red light and a line of cars when we were still a mile away from the carnival grounds. Jim pulled into a side street and we left the car in what we hoped was an ok place and, though we were walking at a pace usual to ourselves (the pace we walk on walks with Charlie), we passed everyone, making our way at one point through a cordon of motorcycles that were all (blessedly) immobil.. Charlie and I breezed past a row of orange cones and a man in a reflector vest who said 'two kids and one adult?' to Jim---we hadn't had to pay admission earlier in the week. I should have just kept walking with Charlie, but turned back to say, 'I'm 41.'
After Jim and Charlie got their seat on the ferris wheel, it was several minutes before the actual ride started as the wheel turned slowly so that one set of passengers might disembark, and some new ones take their seats. I had gone to stand vaguely near the line of the giant slide and from there beheld Jim and Charlie slowly making their way round the curve of the wheel. Then the whole apparatus was set in motion and they must have gone around some 20 times. At one point, a green burst of fireworks burst behind them.
Charlie's ride down the slide was very fast. Amid people, loud singing in the manner of Melissa Etheridge from the stage, booths and garbage cans and smoke issuing forth from grills for barbeque and burgers, Charlie followed Jim to the swing and got the last seat. He was on the inside but still got the full effect of the ride, still had that 'I am here, this is what I need' smile. That was the last ride and we gave away our remaining tickets to two younger boys whose mother was pushing a big stroller.
Charlie had not had a peaceful day. He could not sleep till 1am Thursday night and, at school, was clearly uncomfortable and unsettled and, eventually, plainly highly agitated for the whole morning and into early afternoon. A class trip to go grocery shopping had to be rescheduled and the other students were also not at ease. When Charlie got home and sat to use the computer, the video must have stopped about every 10 seconds, due to a phlegmatic internet connection. He gave up on it and went to his room and came down around 5pm for a bike ride with Jim, followed by a walk with me, and then we went off to ride that big wheel one last time.
I'd gotten irked earlier in the day myself and wrote this (the post below) to expunge my annoyance. The afternoon posting (Charlie was still at school) worked and, once back from the intensely over-stimulating and equally fun experience of the carnival at night, as Charlie checked out what was to be had in the kitchen and Jim sat down for a well-deserved rest after 10 fast bike-miles in 94 degrees and a lot of driving, I read Nox, my favorite writer's latest book---much more on that later.
Nox is Latin for 'night' and lux for 'light'; et is 'and.' Nox et lux, night and light, night together with light, I think this is not the first time I have so described our days, our nights.
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.
I've been pulling out this piece of paper upon which Charlie wrote "can't find it" at intervals as we use the laptop. He's chiefly interested in going to YouTube.com or Google search to watch tv shows from his (gulp) early (Charlie will be thirteen in just about four months---oh, my, ........) childhood, or to see photos of toys that he used to have: a game called Farm Families, a VTech laptop, and the original LeapBook from Leapfrog.
I was relieved when Charlie started getting interested in searching for the toys. With a little finessing with one's search terms, most anything toy-wise, CD-wise, video/DVD-wise, created in the past 12 1/2 plus years can be found on the Internet. (For instance, typing "Farm Families" only gets us one photo of the box of that game, but type in "Farm Families Milton Bradley" and there's a few more photos for Charlie to peruse). Videos of kid tv shows are the dangest thing to find, thanks to copyright restrictions. I mean, of course I know that these are necessary (and I even found myself downloading---a bit ironically?---a copy of a book about piracy and the "intellectual property wars" the other day). But explaining to Charlie why one day there was a video he's watched for the past few months on YouTube and the next it was gone "due to copyright restrictions," pulls at the parental creative juices.
In the past, I would tell Charlie "that one's not available" (a phrase that sounded stiff and "huh?" to me) and then "we can't find it." At some point or other, the latter words hit a quite raw nerve in Charlie, and hearing "can't find it" garnered a response equivalent to another bugaboo phrase, "broken." Hearing that something was lost or irredeemably beyond repair, bothered Charlie to distraction and, sometimes and ultimately, "behavioring." It was only in the past few months that---maybe in hopeful consideration of Charlie getting, as he indeed is, older and more mature---that I decided to address the delicate issues of "can't find it" and "broken" head-on. First I deliberately said those words but just once, in a clear and steady, and matter-of-fact voice, in a (very hopeful, possibly vain) attempt to help Charlie think of these concepts as part of (for lack of a better expression) the natural order of things.
And over the past few weeks, I've had him write "can't find it" and "can't find them" a couple of times and have referred back to the above-photographed sheet. Somehow me doing so, and pointing to the words (mine and Charlie's) as I say them with Charlie repeating, makes the notion of "can't find that video clip anymore" not something to get too overwrought about.
Charlie might say "broken" over and over (getting more enervated with each utterance), or pronounce "can't find it" in arch tones of distress. I used to try to divert him, very unsuccessfully, from saying those words over and over, thinking that I would "take his mind" off those thoughts. I suspect now that I only made his worries worse: The more I tried to pull, the deeper in he sunk in a quicksand of words mixed with thoughts mixed with strong feelings.
Again, words on paper (especially words he has written) seem to have a special power for and on Charlie such that, after a few rounds of requests, he stops asking for those unfindable videos.
Except of course, last night---by merely having Charlie type into Google search rather than YouTube and click-roaming here and there---we found the videos, or at least trailers and snippets of them, on IMDB and MySpace.
At which point, alls one can say is ηυρηκα, right?
Via lagloria via Izzyland on Twitter, I read this article on autism in Haiti in Spectrum Magazine by Cris Italia. One commenter, a librarian at a school in New York, asked about contributing to an organization that helps children with disabilities; Italia notes that such information will be posted soon as it's found out. I'm still looking for an autism organization in Haiti on this list of such organizations around the world (via Action for Autism). The Justice For All blog of the American Association of People with Disabilities (AAPD) reports:
In Quakes Aftermath Haitians With Disabilities Suffer DevastationAlso see LauraHershey.com on how to help Haitians; another of her posts provides more information on Portlight Strategies, which is collecting emergency supplies and equipment to ship from Atlanta to Port-au-Prince. You can also see the United States International Council on Disabilities for additional information and a list of non-governmental organizations that accept donations and specialize in assisting individiuals with disabilities in Haiti.I think we all felt shocked, saddened, and horrified by the news and images of the aftermath of the earthquake in Haiti this past week, and many of us lent money, time and support to excellent relief efforts. However, I was pleasantly surprised to hear about relief organizations that are targeting those victims who are most severely affected, those most isolated, most stigmatized and most overlooked by other organizations, those with disabilities. Before the quake approximately 800,000 Haitians were living with a disability. With the destruction of the quake, that number is likely to have increased significantly. Portlight Strategies is on the ground in Haiti providing food, water and other emergency service to our Haitian brothers and sisters with disabilities. Healing Hands for Haiti has been serving Haitians with Disabilities for over 10 years, and despite having suffered serious losses of their own, they are continuing to assist in Port-au-Prince, the capital city.
Life raising a child with disabilities like Charlie certainly is not easy, but I know he, and we, are fortunate that we're in a place where there are many, many resources, and that Jim and I have been in a position to provide many of these for Charlie. We had a very nice Saturday here, with a rather early morning wake-up (5am---actually, that doesn't sound early, compared to 3.45am), a walk, a mid-morning snooze for Charlie, a trip to the barber shop for a buzz cut (also for Charlie---not me, for sure!), a bike ride. I'm noting a small but (to my mother's eyes) progression in Charlie's writing skills, as in this rendition of Saturday:
The initial "S" is a bit of a doodle-squiggle, but he slowed down to write the remaining letters, looking carefully at my model. Again, I have a very motherly bias, but I find Charlie's writing of "haircut" quite impressive.
Charlie continues to do these little exercises without objecting when he takes up the marker. I would like to work him up to using a pencil or pen, but I can see Charlie is more inclined to write with a felt-tip marker as he has to exert less pressure, and so can concentrate more on forming the letters; he can also see the results more easily. Indeed, at the moment, Charlie has a pleased little grin when he puts marker to paper.
Not going to ask for more than that here.
Charlie does not have school today, Monday, the 18th of January. As I've regularly written before, no school for Charlie is usually cause for a lot of concern: While we're readying ourselves for some "no school anxiety," I wrote about Why I'm Glad My Son Has No School Today, on Martin Luther King, Jr., Day, at Care2.com.
Last weekend was rough so we went into this weekend with a fair amount of wariness. So far, it's been two good days, minus the half-hour on Saturday when Charlie threw the contents of three kitchen cabinets onto the floor. Within fifteen minutes--sniffling and mournful---he was picking up every last item and placing them all back where they belonged. The day proceeded very nicely. Sunday he slept in a little, went on a short bike ride (he saw "a certain dog") and then a walk. It was good that we got those in as, from noon on, it rained, sometimes very heavily.
We ended up using the computer way too much. We've pretty clearly established that watching videos can really over-stimulate Charlie (leading me to suspect that he's not likely to fare well at a movie, for the nonce). I've been having him do some writing to break things up and so far the result has been good. I've been having Charlie do some writing intermittently with the result that he has not been getting overly obsessed about watching video after video, and also has been handling the frustration of not being able to find a particular video that he wanted.
First I have Charlie write the date and day of the week. Thereafter, I've had him write things we've just done ("I walked") to things he keeps saying ("Gong Gong Po Po coming soon"). After we'd tried typing in several combinations of words to find one video with no luck, I wrote "can't find it." Charlie copied the sentence and then I pointed to each word as I read them out loud, Charlie looking closely at the words on the paper.
Perhaps putting his worries, wants, obsessions into a few words on paper is helping him to feel that those worries, wants, obsessions are contained and therefore a bit more under control, a bit more manageable? This is speculation, of course, but trying to get a handle on my own worries, racing thoughts, fears, imaginings, is one reason that I write them down. I feel a little revolution going on, if this is the case for Charlie too.
Indeed, he remains not at all unwilling to pause from video-watching and to write. And, his writing (in 2-3 inch high letters) is getting a little better, especially with the first few letters of each word. I can also see that he's looking much more carefully at the letters that I've written out. Charlie's always had trouble writing diagonal lines (due, we suspect, to difficulties with fine motor control and also mind-and-hand coordination). Yesterday he wrote the best k I've ever seen him render, one vertical line on the left and two perpendicular, shorter diagonals. Those two shorter lines were written like this > rather than like this < but I could tell that Charlie was really trying to get them in the right place.
Yet another reason why I'm ok with Charlie having a holiday today. If it weren't for the civil rights movement, where would disability rights be, and the Americans with Disabilities Act, and IDEA----Charlie's and so many children's right to a free and appropriate public education?
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