A long time ago (definitely “before Charlie,” which is “bC” to Jim and me) “someone” (she writes poetry) wrote this to me:

Poetry is life; it should change everything around it. Do only what changes you.

The lines were written at the end of a letter regarding a topic that was, at that point in time (I was about half as old as I am as I write this), of total everything significance to my life: What should I study in graduate school?

I was a Classics major in college and, finding the sustained study of Latin and ancient Greek intellectually intriguing, albeit a little wearying on the soul, I was drawn to another academic discipline, Comparative Literature; I had hopes of studying something called “literary theory” or just “theory” (as in something known as deconstruction). Should I stick to Classics, to the philological study of dead languages that I had been entrenched in since I was 13 years old? Or should I do something that seemed a bit more……daring, and venture beyond the pleasant realms of relative clauses of characteristic and indirect discourse, and the dative of possession, and learn about this theory thing?

Nearly two decades later, I can—as I think you can surmise—-only shake my head in exasperation at my younger self. Getting a graduate degree in whatever or whatever was the easy part: Holding onto my son when he was 6 years old and flailing, flailing, flinging his body and especially his head with every bit of his energy towards a manhole cover on a train platform in Newark, New Jersey—-and only wishing he’d stop, but he just couldn’t, and really especially wishing that the ring of people who were standing transfixed around us would just do something else than what they were doing (standing there and looking)——I never knew how easy I had it, when I was agonizing over graduate school programs in 1989.

Charlie was born some 8 years later and, ever since then, my life and that of my husband Jim’s had been one journey into the unexpected, of the unexpected. Charlie’s being diagnosed with autism in July of 1999 was but the moment when Jim and I, and Chariie, stepped onto a long, winding, and so often uphill road. And while I’ve still kept the collected opera of Virgil, my favorite ancient poet, close by, it’s Charlie who’s really changed everything.

To rewrite some of the words that poet once sent to me: Charlie is our life, and life with him has changed everything around us.

Because of Charlie, we’ve left jobs (a tenured, endowed position at a substantial midwestern university in Jim’s case) and moved our household several times (and there are more moves in the future, we know). Because of Charlie, everything is changed and different from what I thought my life at the forty year mark would be like, and while it’s not easy, it has been good.

And there’s a new change, a big one, right around the corner for me.

As reported, I’m blogging with Dora Raymaker about autism at Change.org starting now. The new blog is still a bit “under construction” but it’s up and running and some discussion’s started about, for instance, some autism controversies: Let me know what you think.

And yes—-I will not be blogging here as of next week. I have a lot more to say about that and it’s very hard to even think I won’t be writing at Autism Vox anymore. I created the name for the blog and have been writing it since February 2006. I’m hopeful about this change, but that doesn’t make it easier—–it’s been a long and interesting journey with Charlie and it looks like there’s a new path ahead, and I hope to continue walking on it with all of your company and community.

Because the journey is best with friends, my two great guys, and all of you—–onward, together.

So you know how we made sure to have a very lowkey Thanksgiving and also to keep things real simple and understated for Charlie’s birthday, a holiday involving days off from school and an event that has been known to cause Charlie some serious consternation? In 2008, both of these days passed well and quietly for us, largely because we strove to make them Super No Big Deal in the biggest way.

So you think I’d have applied the same tried and true formula to Christmas and New Year’s.

Granted, since we take a 3000 mile airplane trip from New Jersey to California, and (as we traveled on Christmas Eve day, due to Charlie’s having his last day of school on December 23rd) no sooner had we landed and gotten to my parents’ house then we all got into a rented minivan and drove a couple hours out to the Sacramento area to my uncle’s—-due to this, Charlie was doing a lot more (energy-wise, social-wise, transition-wise) in one extremely long day than he often does in a week. The next day, being Christmas, meant that we went to the cemetery, then lunch in Chinatown, then relatives came over, then we went up to my aunt’s house—-and the next day, one of my relatives invited us and several family members out to a big Chinese dinner—-and then the next day, we took, or rather attempted to take, Charlie to Target, only this Target was one he’d never been too and was in a two-story building with mod-metallic-architecture—–

You get the picture. It was totally newness and super over-sensory overload, with a couple dashes of lots of food of a rather rich, holiday feast nature, and several switches from this activity to that event and the result was:

A very big stomachache, in a literal and figurative sense, leading to literal and figurative headaches and some rather erratic moments when Jim and I found ourselves flying after, and flinging ourselves (again, literally and figuratively) upon our boy.

We’ve been saying “nope” to social engagements (with the exception of a lovely afternoon of conversation and camaraderie with friends and their super great kids and a very attractive trampoline; Jim spent the day hiking with Charlie and walking him all over the neighborhoods around my parents’ house); have been all suddenly aware of how many echoes and sounds my parents’ house (it has all hardwood floors) resonates with, and also the height of the ceilings in some of the rooms and the way the space is sectioned up; have been adding up all the greasy sweet (gluten-free, actually, but greasy nonetheless) treats Charlie ate too much of the first two days; have been noting, yes, he is still sleeping in the little single bed my parents bought for him when he was, oh, a toddler. We’ve been making sure that Charlie does all the things he knows how to do at home—setting the table, stripping the sheets off his bed, carrying bags—out here.

And, I appropriated my mom’s calendar and x’d out the days of December that have passed, and pointed out the date we’ll be back in New Jersey. It’s actually a calendar that I made for her (courtesy of iPhoto software). Charlie looked at the boxes with the x’s and then started to turn the pages of the calendar. I pointed out shots of him sitting in the black chair he always slumps in after school; the cheap and study IKEA carpet that never seems to be crumb-free; the kitchen in our condo where he gleefully chomped on half a watermelon; and, of course, the ocean where he surfed and boogie-boarded last summer. Charlie’s eyes brightened up at all this.

No place like home for the holidays.

Something Charlie already has in book/video/DVD form………. It was the first present he opened and the one he kept by him when he fell asleep on the couch. (Any guesses?)

The other day I read a review of a play by an Irish playwright, and was reminded of another of his plays and was relieved it was a bright morning of full sunshine and a strong wind pushing away the clouds, or I would have been spooked, as this other play (to me) was thoroughly terrifying in a Kafkaesque kind of way (but keep in mind, I can’t handle seeing horror movie).

I was distracted by other things and then, before I knew it, I was running down the stairs to meet Charlie’s schoolbus, and watching him make his lunch, and helping him practice the cello, and then (even though it must have been the coldest day of the year) we went on our daily walk up and down the main boulevard of the condo development we live in. As it had been snowing on and off since Friday, there were medium-high piles of chunky, soot-streaked ice and a patchwork trail of ice from snow that had melted a bit in the day, and refrozen.

In earlier days, I would have been gripping Charlie’s hand, terrified that he might slip on the ice and fall and—if he came down hard on his hand or knee— hit his head, as if to clarify to himself that some other part of his body was hurting. Charlie’s balance when he was younger was always a shaky thing and he didn’t seem to note when there was slippery black ice, versus pavement. Monday night, Charlie walked on his own, now slowing down to tap the ground a bit to see where it was slick, now stopping to stomp and stamp on chunks of frozen snow.

The boulevard is well lit and cars are constantly going by, so it was alternately fairly bright, and then dark, with some of the snowy piles illuminated. As we walked—-Charlie humming and singing a few verses of “Winter Wonderland” in a loop—I thought of how a younger me walking on a dark December evening by myself would have thought irresistably of that other play by the Irish playwright, and been scared to think of who might be walking at my back, or what might be hiding in the shadows.

Maybe I’ll be walking a lot longer with Charlie, and maybe he’ll indeed be living much longer than many children do with their parents, but no play or story too’s scary when you’ve a stalwart, a steady companion, on dark nights and bright days on the long long road. When I’m walking with Charlie, I’m never alone.

Soon as December started, my students started asking me what we were getting Charlie for Christmas. I fumbled with an answer—what do you get for the child who doesn’t ask for anything?—and they seemed quite incredulous that he’d no desire for any electronic devices or a football jersey with X player’s last name emblazoned on it. I’ve been used to telling people that things are different with Charlie but, on further reflection, the thought occurred to me:

Charlie, at 11 1/2, is getting closer and closer in age to my college-students. Certainly there’s more than a few similarities between him and the tall guys with really big sneakers or Timberlands with legs too long to fit in the desks and always fishing around in a beyond dog-eared notebook for the homework they forget they had to do. But it’s been a new thing to conceive of, that, before I know it, Charlie will be nearing the age of a college freshmen—a young adult—an adult.

Well of course—-like anybody, Charlie is going to be an adult for most of his life. With his limited expressive language (two and three word sentences) and his struggles with his academics (finally finally he is writing both his first and last names), I guess some would say that Charlie “seems” or “is” a lot younger than his age; that, “mentally” he’s at preschool level or some such. I guess this might seem to be the case to some when they first see Charlie, taller than all of his cousins on Jim’s side (and that includes the cousin in his 5th or so year of college), and when some hear Charlie humming more than saying words, and when they see Jim and me hold Charlie’s hand as we cross an icy parking lot. But time and again I know, never presume too little competence, to little understanding.

Often there seems to be a sense of division—of interests, of needs, of priorities—between parents of young autistic children and autistic adults. Parents of younger children tend, understandably, to focus on early intervention and educational services, and ways to obtain and pay for such services. Talk about “autism rights” might strike some as absurd and beside the point in trying to teach a child to say his own name. But—while my son clearly has a lot of challenges and is most likely always going to need a lot of support to work and live—I find that, more and more, discussions about autistic adults’ needs and autism rights speak to him and his situation.

My son is tall and strong. I don’t believe that restraints or any physical procedures, and certainly not any aversives, are how to help him, at school and elsewhere. He’s in a school district that understands this but that’s not everyone and my son needs always to be treated with respect and in ways that acknowledge his sense of self, his dignity. Too often, this gets forgotten. Charlie has his reasons for organizing his stuff in the living room in a certain way and we don’t see this as odd or aberration, but as Charlie making sense of the world around him, in his own way, in a way that we’ve come to appreciate and then some.

I mean, I like to order the stuff on my desk and in my bag in a certain way; last thing I want to be doing is scrambling for the car key when I’m flying off to meet Charlie’s school bus.

The question that keeps playing in my head, truly, is: When Charlie is the same age as my college freshmen, will he be as tall as the tallest guys and with those seriously big feet?

When Charlie was first diagnosed and for many years after, sounds loud or soft, low or high, did not seem to bother him. He was certainly drawn to music but didn’t seem particularly bothered by sirens, loud merry-go-round music, shouts, fire drills. Every time we had to fill out a checklist, or talk to a new teacher or OT, we always shrugged “no, no” about “any sound sensitivities.”

Fast forward to about two years ago, when a motorcycle shot past the black car and suddenly I heard a knocking sound: Charlie knocking his head on the back of the seat and crying.

That was a pretty obvious sign of something about Charlie’s sensitivity to sound. I began to drive with the windows shut (and, on hot days, with the AC fully on). Littly by little, it became apparent that a number of sounds—everything mentioned above—indeed bothered Charlie, who signalled this by sometimes crying out or placing both hands oer his ears.

But was he always seeking to block out sounds? I’d turn on a Barney video on YouTube as Charlie requested, only to see him watching from at least a foot away, hands over ears. Could he not simply be seeking to block out the sounds, but to filter them, screen out some aspects of them?, and to listen better?

We tend to equate hands over the ears with a wish to shut out some sounds when Charlie might be attempting to do precisely the opposite, to listen and hear better.

Just as: Nodding one’s head says “yes” here in the US, but it says “no” in other cultures. Same gesture, very different meanings.

It’s really been about two years that Charlie has seemed so much more sound sensitive and Jim and I think that what might be going on is that Charlie is much more alert and attuned to what’s going on around him, and therefore more in need of filtering out all that stimuli from the world. He’s listening better than ever, that is, and trying to figure out a way to best make sense of it all.

Yesterday, he sat by the side of the swimming pool for 40 minutes: We were at an event we’ve often been to, a swimming hour just for autistic children with numerous friendly high school students volunteering. Desite kindly coaxing from three different kids and Jim and me, Charlie refused to budge until the very end, when he waded in the shallow end and swam slowly to the deep end. Just as he got there, it was announced that it was time to get out. Charlie remained in the pool as it emptied out and the lifeguards replaced the plastic ropes for the lanes, and the very water and air quieted. He stayed there, floating and swimming a bit, in the deep end and middle of the pool, for some 40 more minutes.

Once upon a time, nothing could keep Charlie from jumping (or trying to jump) into a pool as soon as he saw it. Now he likes to think about it and take in what’s going all. No toddler in a tall boy’s body, he’s quite aware of what’s going on; he’s changing all the time.

I can’t prove it right now, but I’m more and more thinking that Charlie may well have perfect pitch.

Though without a piano or cello teacher (I’ve followed a few leads, but with no luck, yet), Charlie has still been practicing, and has often asked to “play cello” in the later afternoon, before he and I go on our usual walk. Last week, after I took the cello out of its case, a few strums on the strings revealed that it was really out tune. As in, really, the D way way too low, the G unidentifiable, the C low, and loose.

With Charlie saying “play cello,” “play cello,” I turned the pegs, just a bit, but with the memory of how I once broke a string on my viola still fresh, I was very hesitant. Charlie kept asking to play and so I brought the cello over to him and opened the music book. “A, D, D, A,” he sang, perfectly in tune—-and the not-tuned cello was distinctly wrong-sounding. Charlie frowned and kept singing out the notes, in tune, before he plucked the flat-sounding strings.

He kept frowning, and singing the notes, and persevered with the plucking. And when he’d finished and I was wiping the rosin off the strings, I told him we’d bring the cello to the music store to get it tuned.

That was over a week ago. Charlie kept asking to play his instrument, most insistently, and so each night I’d try again to tune it, and just hear the C and G and D as they should be (the A was the only sort of tuned string), and then the pegs slipped no matter what I did. After practicing, we’d go for a walk and then when we got back it seemed late and was dark and Charlie wanted dinner. So it wasn’t until yesterday, Thursday that I put the cello in the trunk of the black car and we drove to the music store.

A young man, his hair as close shaven as Charlie’s and a stud in his ear (and about the same height as Charlie) immediately took the cello and starting working on it. Charlie stood at the counter, eyes wide open under the two hoods (sweatshirt + winter coat). The store has several soundproof rooms for lessons off to one side and there were parents and children, and instruments and racks of music books (A Charlie Brown Christmas! the entire Bastien piano series! sheet music for “In My Life”!) everywhere. Charlie briefly raised his voice, then stood with his hands over his ears. Looking in a rack, I found a beginner’s piano book that had some of the same songs that Charlie’s piano teacher had adapted for him to play and it occurred to me, why not have Charlie learn to play these slightly more complicated versions of songs he already knows?

We left the store with a tuned-up cello and Charlie carrying a new piano book. There were Christmas trees for sale across the parking lot and the piney smell was distinct in the cold air. Adolescent girls walked by us with guitar cases and their mothers calling out, and younger siblings trailing.

Charlie hummed “Winter Wonderland,” all the way home, and every note was in its place.

Ping, ping, ping.

There’s nothing quite like it—those rhythmic twirpings that say, “The food is microwaved.” Charlie having become quite proficient at making his own afterschool snacks thanks to this modern technological innovation (and the phenomenon of frozen food), it’s a sound heard often at out place around 3pm, every weekday.

Imagine the response to hearing 49 microwaves set to play Jingle Bells—-now that’s some holiday cheer.

‘Tis the holiday season and I have pretty much finished shopping for everyone on our list, from relatives to my sister to multiple cousins, office staff, the letter carrier, Charlie’s teacher and aides, Jim—-and I’m down to one last person.

Charlie.

What do you get for the boy who doesn’t seem to want anything?

Today’s Chicago Tribune captures this dilemma:

Parents struggle with whether to oblige the child who desires nothing more than church directories, word puzzles, spinning toys or even cleaning supplies—all real examples from youngsters’ wish lists.

Friends might see the child’s exotic interests as humorous or cute. But the youngster’s family recognizes that the obsession represents their child’s special need for a coping tool or bridge to the outside world that is otherwise confusing and overwhelming.

One mother, Laurie Jerue, whose 20-year-old daughter Sarah is autistic, has “struggled for years with bittersweet emotions as she bought her daughter Big Bird toys while the girl’s peers moved on to teenage interests.” Over the years, the Chicago Tribune notes, she’s realized that her daughter is “merely a collector”—-as Jerue says,

“Once I let go of some of those social expectations . . . and bought what I just thought would make her happy, it’s all been good.”

Charlie’s often looked for a long time at Barney and Wiggles DVDs (Teletubbies bring a fast “NO!”) in the store racks, and then said “no” when asked if he’d like to get one. He’s often received DVDs of movies like Harry Potter that he’s not been inclined to watch; just yesterday, I saw him taking out the DVD cases, and often his interest in things grows, very slowly, over time. He’s been on and off interested in electronic toys (Gameboys, iPods, and the like). Last year we got Charlie a new bike and he certainly regularly requests, and takes a lot of joy in, long bike rides with Jim. (Get a basket for his bike, maybe?)

Charlie’s favorite things—-the things that he does indeed ask for and clearly wants—are often things he’s had for awhile (his old beat-up blue backpack) and, too, things that belong (belonged) to Jim, me, my parents. If I may say so, he lacks consumer consciousness and frankly, in an age when a Walmart worker got trampled to death by very over-eager (understatement) on Black Friday, I feel more than grateful that Charlie’s our boy.

(In other words, I’ve already got all the gifts I need.)

And if I may rephrase my title—-it’s not so much that Charlie isn’t asking for anything. It’s that I need to listen to better to what he’s telling me, about what he does not want, and what he does.

I grow old … I grow old …
I shall wear the bottoms of my trousers rolled.

I write fairly frequently here about Charlie growing up. Of course, he’s not the only one around here getting older: It’s my birthday today, and I’m 40.

Fout-ohmygod, as one my mom-blog-friend puts it. Like the narrator in T.S. Eliot’s poem, I grow old, I do grow old, and I actually do roll the bottoms of my trousers (ok, pants), because I’m too lazy to get out a needle and thread and hem them.

My mother did teach me to hem, years ago, and it really is years ago, due to this birthday thing. She taught us the basics; I think my first “creation” was a pocket made of fabric from the scraps of the Halloween costumes and jumpers and curtains and pillows she used to make. She put together a sewing box for my sister and me and I remember trailing behind the two of them as we wandered the rows in the fabric store. I loved seeing all the prints and patterns and colors and running my hands over the bolts of material, and always had to steal a long look at what I thought was an infinite array of buttons, snaps, rickrack, ribbon, and “notions.” When I was around 7 or 8 and my sister, sewing boxes in had, took the AC Transit bus to the big town a couple miles away (we were living in what was then a very brand new suburb) and took lessons at a Singer sewing store. I was mildly terrified of the needle on the machine going through my finger and didn’t advance beyond making an awkward wrap skirt from a Simplicity pattern.

The reason we were taking AC Transit to the sewing lesson was that my mother had gone back to work and it was just my sister and me for many hours in the long, hot summer days. The once a week sewing class broke up the time (most of which we spent, quite contentedly, reading books). A year later, we moved back to Oakland, where my father’s family is from (and where he, my sister, and I were born). The sewing machine, cover clipped securely on, sat in a corner of the downstairs room where my dad had his desk, or in an unfinished storage area.

My mother also used to needlepoint and my sister took this up, and still does (the green dragon under the words “Charlie’s room” still hangs on a wall by his’s window). I didn’t think about sewing till I was in graduate school and on my own, and, finding that I really didn’t want to have to roll up the bottoms of my pants, I asked my mom to teach me how to hem, again. I did a few pairs of pants with her, yes, “helping” to even things up—-ok, sometimes my mom, who is just a bit shorter than me, would just pin up the pants, pack them up in her luggage, hem them at home in California, and send them back to me. I probably got more care packages while I was in grad school and living in my own place than when I was in a dorm in college, and felt a bit ridiculous when finding myself really looking forward to see what kind of cookies she’d saran-wrapped in pairs.

So much for me “growing up” and being “independent.”

These days, she still sends the packages (my dad was quite thrilled to discover those flat-rate shipping postage boxes). Now there’s stuff for three and, in the latest sent two weeks ago, two pairs of pants, carefully hemmed, for Charlie, who seems to have reached a stage of his life when pants grow shorter overnight and when he and Jim can pretty much share t-shirts and socks. (And when the three of us were briefly confused the other day about whose black suede slip-on shoes were whose; Jim’s appeared only slightly bigger than Charlie’s.) I not only still don’t hem pants, but work is very busy, and taking care of Charlie, and talking and thinking through things with Jim, and everything …..

But I know I could hem pants if I had to. I still have a sewing box outfitted with needles of different sizes and different colors of thread and scissors and a thimble (though I did misplace the box for awhile in one of our moves). I don’t have to roll up the bottoms of every pair of pants, having finally found some that more or less are the right length, but I like knowing that I could if I had to. In the occasional times when I’ve sewed a button that fell off a sweater or one of Jim’s shirts, or tried to patch the lining of my coat pockets, I’ve found the activity of sewing—making the knot in the thread and moving the needle and thread in and out and in and out—focusing and, while not exactly relaxing, soothing in the repetition.

And then, my wardrobe has of late been a bit over-supplied in khaki and ripstop pants and jeans, some with elastic waists: The pants Charlie was wearing last year are pretty much the right length for me.

40 years old, and wearing hand-me-ups from a not-yet-adolescent boy.

Such are life’s lessons when you know you’re older, and you’re trying, very hard, to be just a bit wiser, especially when you know you get to spend the years to come (40, 41, and counting) with your two very, very best friends.

(But how long will Jim have a few inches on Charlie—there will be time, there will be time.)