We Go With Him

Actually Waiting For Dad

So Jim went to work on Wednesday morning and Charlie -- not that he was sure he would -- survived.

Of course, Jim has always worked, far longer hours than me, for all of Charlie's life. What's new is that Charlie, now a teenager, is so much more aware of everything than he used to be. Also, Charlie really adores all those bike rides he and Jim do together and knows that there's no substitute for his dad.

Charlie was awake to see Jim leave for the train after which a very pleasant morning of not very exciting errands passed. Charlie and I mailed some special things to a dear friend who recently suffered a great loss -- we think of her and her family all the time -- and a box of books to my cousin's little kids. We stopped at Charlie's pediatrician and picked up school health forms. We drove out to the town we used to live in and visited the cemetery to leave some flowers for Jim's mother.

Those were my requests; Charlie then had his, to check out two convenience stores and make an early McDonald's stop.

We went home and then, at Charlie's request, out on another ride. But, know it or not, Charlie really just wanted to hang around at home and wait for Jim. He turned down suggestions to visit the little local amusement park and other choice venues and, once back home, posted himself on the sidewalk looking north.

Happily, Jim caught an earlier train than planned due a fortuitous subway connection and fast running. Charlie ran to meet him on seeing him walking down the sidewalk.

Then, of course, it was time for the first bike ride of the day.

 

Anticipating Waiting For Dad

Jim has to go into New York today to work today and we'd prepared Charlie in advance, via the hand-written multicolor calendar I made last week to show him how he'd spend vacation, and a few conversations. I suspect anticipation was why Charlie woke around 2.30am Tuesday morning and turned on the Replacements.

He let me turn on the ocean waves sound instead and eventually went back to sleep, only to wake by 7.30am and call for, you guessed it, a bike ride. You can see Charlie in a skip-happy mood in the photos above and below.

Perhaps Charlie wanted to make sure he and Jim got in a good store of bike rides as they did a total of 4 (3 local, 1 in Jersey horse country) on Tuesday for a total of 34 miles.

In the evening, while Jim (deservedly) was stretched out on the couch reading, Charlie announced,

'Work.

The way he pronounced the word it sounded more like 'walk.' But then we realized that Charlie was trying to tell Jim that he should go to work now -- so Charlie could get over having to anticipate Jim going and coming back. I accidentally said the word 'train' and Charlie then started to say 'Dad train, Dad train' and to tell Jim 'socks, socks' (i.e., Dad, get on your socks and shoes and go).

Jim remained on the couch and Charlie was tense but not overly so. After a good hour of informing Jim he was supposed to go to work on a Tuesday night, Charlie took off his own shoes and socks and went into the kitchen for a large-scale snack after which he told me, with intense eye contact, 'bedtime.' After the previous night's truncated sleep, he was soon in dreamland.

I used Instagram to change the lighting on the photo with the below result, which I'm liking as you can just see a bit of a rainbow?/flash of light to the left, shining down on Charlie.

Something To THINK About: The Thinking Person's Guide to Autism

Charlie got in a full night's sleep on Sunday and, Monday morning, he and I had a cheery ride to the Big Autism Center, even with a brief turnaround after a few blocks when I realized that I had forgotten to give him his medications.At school, he got right out of the car and, when I picked him up several hours later, right back into the car, again cheerily. He didn't say anything about going into a gas station convenience store that (when he gets me to drive past it) he usually wants to stop in. As we neared home, I mentioned that a friend who'd visited us regularly last summer would be visiting; five minutes later, Charlie said her name a couple of times. He was (I'll opine) shy on seeing her and, after asking her to carry up some of his blankets to his room, took a 1 1/2 hour nap. She and I had a very nice talk and Charlie got up just as she had to leave. We said good-bye and Charlie and I set off on a walk at the end of which we passed a neighbor walking his dog, Julie; when Charlie simply kept on walking, our neighbor noted that Charlie usually runs away in fear. 

Jim was home when we got back and Charlie immediately asked for his helmet, and off they went (as depicted in the photo above---one of many such photos I've taken over the years. I must admit). Charlie pedaled unusually slowly and, at one point, started crying. Jim and I both speculated 'stomach ache??' and were both proved right once Charlie and Jim came back. After a shower Charlie had a late dinner and used the computer before going to bed around 10.30pm.

Yes, yet another day in our life, and a fairly quiet one.

I'm good with that, with days without any bells or whistles, any 'excitement' or anything extraordinary. We've had plenty of days like that, many of those days on which difficult neurological storm (typhoonish-level) sort of stuff has occurred. Days when I feel like I've nothing much to write here about are days that I'm glad for: They're days when we've managed to keep the peaceful-easy going; when there's a general serenity, with a nod to that word's Latin root, serenus, an adjective describing a clear blue, cloudless sky (which was the actual state of the sky here on Monday, somewhat apparent at the top of my photo).

I guess writing about one serene day after another would make for boring blog reading. I was reflecting on this, on some of the more hair-raising and wrenching experiences I've documented here, and it occurred to me, I'm not sure I would have wanted to read about some of these sorts of things when Charlie was younger; when Charlie was just-diagnosed. Just a few days ago I wrote that, when Charlie was a preschooler, I don't think I would have wanted to hear how hard adolescence has been for him. I'm not sure what I would make of some of our, um, 'adventures' if I were just-introduced to life as the parent of a child on the autism spectrum.

On a mundane note (and since I'm not teaching this month), I've plans to do some blog-upkeep here in the form of adding some explanatory material about this blog and our family, as well as links to websites, blogs, other resources of autism and disability, books and the like (in the midst of some other things that need to Get Done, or at least need to be attempted before July and summer school teaching and freshman orientation and advising get underway). 

And on a significantly less mundane, and even simply, potentially spectacular, note, I'd like to mention a new project that I'm thrilled to be a part of. It's a community book and blog project entitled The Thinking Person's Guide to Autism started up by some commadre bloggers, writers, advocates, thinkers. You can read more about it here and find out how you can submit something here. The book deadline is coming up fast--it's July 2nd---and the book will be published by August 3rd.

That means I better get crackin' on my submission, though I guess I have a bit of a record at churning out producing online content.

And regarding the realities of life with autism, something that I've always striven to chronicle in writing about our days with Charlie. The reality of Charlie taking a nap is that he tossed and turned and chattered for an hour in his bed on Monday night and then came downstairs. I set the timer and he used the computer. The timer rang after 30 minutes and---in the middle of a video that he's been interested in of late---I told Charlie 'bedtime,' he said 'bedtime' and went back to bed and, eventually, to sleep. 

No, when I was a newbie parent with a baby who needed to nurse throughout the night, I would not have been thrilled to hear about the many difficulties 13-year-old Charlie has had going to sleep and staying asleep through the night. (Though, for the record. Charlie started sleeping through the night when he was about 2 months old.)

On the other hand, he is a teenager now and, being such 'diagnosis and all,' not exactly going to agree to a 7.30pm bedtime (not that Charlie ever went to bed that early). 

And on the other other hand, when that timer went out last night, Charlie paid heed and went to bed without if's, and's, but's, or backtalk.

Yes, we're more often groggy than not, but coffee was invented for a reason, wasn't it? And life, this life on the long road with Charlie, it is good. I really think, I know, so.

You Travel, You Come Home (#595)

Remember Harold and his purple crayon? Harold draws his way in and out of a series of adventures---a dragon, a sailboat, a picnic of pies, a cityscape of skyscrapers like so many children's block towers piling up, a certain window through which he steps------and he is back safe and sound in his own bed, the purple crayon nearby.

That was the kind of journey Charlie had this Monday night, one new adventure unfolding into the next.

It all started when he got off the schoolbus on this coldest yet of winter days. Jim was waiting by the mailbox; Charlie ran inside, put down his backpack, had a snack ("I want eat bread!") and then they were off to catch a train to Newark, which turned into a PATH train ride to Journal Square in Jersey City.

"He with you?" a cop asked Jim as Charlie moseyed around the station until I appeared, having walked down Bergen Avenue from my office to the station. We hurried down the stairs and there was a PATH train to WTC-33rd Street just pulling in.

We got off at 9th Street in New York and, just as we were at the top of the stairs, a taxi appeared. Jim hailed it and---with Charlie requesting "buckle up" and looking perplexed when we told him there wasn't one---we rode over to Avenue A. We walked down and over in the icey air, Charlie holding Jim's hand and looking all around. We found the subway and Jim and Charlie took a slow D train up to Columbus Circle, a "H'oh Fooodz" store, and Jim's office, where they dined on sushi and soup (guess who had which) and then back into the cold. They rode the subway again to meet me at a bar/café where Charlie, with serious gaze and steady eyes, said "hi" to Roy Richard Grinker, whom I had just heard reading from and talking about Unstrange Minds: Remapping the World of Autism.

We had to walk a little farther north up Avenue A to catch another taxi back to 9th street and the PATH station; this time, Charlie did not ask to buckle up. "Sit," said Charlie while we on the train. "You can stand for now, pal," said Jim and Charlie did, until a place opened up.

We hurried up the stairs at Journal Square and past the clock that reads "Port Authority of NY and NJ" and down to Kennedy Boulevard. Now it was genuinely freezing cold, all the better for a fine fast walk back to the black car, gleaming dully over the gravel of the parking lot. "Turn on," said Charlie. "Beatles?" we asked. "Bee ulls," said Charlie. And, after a track or two, "Bank-kett."

We drove into our driveway and Charlie jumped and kicked and rolled and laughed with glee on our bed and put on his pajamas without us asking. "S'eeps," he announced to me. He got up, blanket and squishy ball and all, and went to his own bed.

If I may paraphrase something I heard tonight: After you travel, you come home (as Harold ends up in his own bed with the crescent moon framed just so in the window) and you see things differently.

Hot Topics in Autismland (#585)

As much as I was excited to start writing another autism blog back in April, I had a few hesitations, namely, what more did I have to say about autism than to record the stuff of our days---tough moments, triumphs, random musings in watching Charlie grow up? Moreover, I was not at all sure how I felt about talking about any number of autism-related issues of a political and "controversial" nature.

Like mercury and thimerasol. Like the MMR and vaccines. Like whether or not there is an epidemic of autism. Like the Combating Autism Act. Like prenatal genetic testing and eugenic abortion. Like the use of electroshock as an "aversive." Like physical abuse. Like the stabbing death of 15-year-old James Alenson by 16-year-old James Odgren.

When you are an autism parent, the personal just is the political. From the time that Charlie was diagnosed, any mention of "autism," be it on a brochure from a therapy clinic, a passing reference in the newspaper, struck me right in the gut, or rather, the heart. This is about Charlie, I said to myself. This is all part of it.

But it seemed like so much and my mind, and my hands, and every waking and sleeping moment was all about teaching, all about taking care, of Charlie. I know some mothers spend endless hours tracking down the latest research on thimerasol and the brain (as Portia Iversen writes of herself in her book Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism ), but---especially when Charlie was younger---just tracking down a box of Things That Go Together flashcards or Charlie's stuffed dog seemed like plenty---like quite enough.

When I did consider the likes of the above "autism issues," it was always through the lens of my personal experience, that is, always through the lens of Charlie and of being Charlie's mother. MMR? Charlie had not had a reaction; Charlie's development was already "delayed." Epidemic? I was certainly seeing more autistic children but, prior to Charlie's diagnosis, I knew nothing about autism. Abortion? I tried to write about this many posts ago (in Abortion & Autism: Two A Words (#122) and found myself approaching incoherence. Electroshock? What.......

Even education, the one issue that I intended to be the focus of AutismVox, had so many corners and angles---mainstreaming, training, LRE, FAPE, all the minutiae of IDEA, and I wanted to keep my eyes focused on my greatest concern, Charlie. Not being a scientist, not having a background in something like psychology or medicine or the law, in anything practical that could obviously applied to Charlie's educational needs, I preferred to keep my opinions (or the lack I had of them) to myself. I was surprised at how even a simple discussion about ABA---which has, through trial and error, proved the best method for teaching Charlie---could quickly escalate into a heated philosophical exchange about human nature and human rights that left me feeling raw and exposed.

But I never felt so raw and exposed as when the school nurse in the town we used to live in called to tell me Charlie had hit his head 20 times and she had applied ice.

I never felt so raw and exposed as I did in some of the meetings Jim and I attended with Charlie's teacher in the district, the case manager, and the consultant with his plans for "behavior management."

I never felt so raw and exposed as when we took Charlie out of his classroom in that school district in November 2005. One of the schools he used to attend was not five minutes from our old house: What were we doing? Where would Charlie go to school? Why had we left our jobs in the Midwest and come back here to New Jersey? What was going to happen?

I suppose you could say, after all that, I felt like I had not too much left to lose. I don't mean regarding Charlie who, once he started to attend a small, private, ABA autism school in December 2005, just started to do well (with numerous bumps and setbacks, including the school closing---but these were tremors by comparison). After all that, I did feel I had a few things to say about autism education and I thought I might as well see how long I could last writing about them more publicly, and, hopefully, learn from others. I remember clearly how alone Jim and I felt that day we took Charlie out of his old public school classroom; there seemed no place for Charlie----there was no placement for Charlie---and we were back to wandering.

The more I wrote on Autism Vox, the more I felt myself drawn to talk all those autism issues---the hot topics I had been careful to offer "just my opinion, that's all," on. I read, thought, I fielded comments, I tried to see every side, I began to write about my oldest passion---books. Vox is the Latin word for "voice" and I heard, and keep hearing, so many voices via Autism Vox, and I am grateful for I have learned from them---from you---and wish only to keep learning.

Charlie is certainly a frequent guest on Autism Vox, where this blog is identified as "Charlie's blog" and that is what it has become, a blog of days lived, many quietly and filled listening to Charlie's words, and smiling at small gains: Jim telling me "Got on the bus this morning like clockwork!" Charlie sitting serious in a swivel chair in the living room while it was vacuumed (a noise that has been known to irk him). Charlie running out to the driveway to greet his ABA therapist and, when the therapist stepped into the bathroom, going to look for him in there. Charlie eating his brown noodles very nicely with a fork. Charlie hearing me mention that a former therapist had emailed me and calling out "Stella! Tara! Stella car, Stella baby!"

Those are the "Hot Topics in Autismland," are they not?

But if you really want to hear more about whether there is an epidemic of autism.........

Unstrangers (#546)

"We can't have strangers in our house!"

I remember saying this to Jim when we first read about starting an intensive in-home ABA home program 40 hours a week for Charlie. It was the summer of 1999, Charlie was just diagnosed, and seemed to spend the majority of his time stacking a set of 10 plastic cups, staring at a bunch of squares boinging on a toy computer screen, and arching his back/howling when we tried to have him do something else. We had passed an increasingly creased copy of Catherine Maurice's Let Me Hear Your Voice: A Family's Triumph Over Autism back and forth and gloomily concluded that we were going to have to do what Maurice have done: Have Charlie in a round-the-clock therapy program using B.F. Skinner's behavioral principles that seemed contrary to every humanistic bone in our bodies. (My preference is literature, Jim's history; we are not scientists, not even social scientists.)

I have written about some of the overlaps and differences between ABA and VB (verbal behavior) in this post, noted some of Charlie's first ABA learning in this post, and described how much of his successful learning has always been tied to real connections forged between Charlie and an ever-growing roster of teachers and therapists.

ABA teaching is often equated with giving students a steady supply of "reinforcement" in the form of food, toys, bounces on therapy balls and so forth and at one time we had a large closet full of such items. But Charlie has always learned the best when the "reinforcement" is no thing, no bit of cracker, no squishy latex tube with sequins and plastic fish inside; when the therapist herself or himself has been the reason he learns, and wants to learn.

I have never entirely figured out how best to thank all of these teachers and therapists---words gush out of me when I write notes and emails, and any gift seems the smallest symbol of gratitude.

Nonetheless, there were Charlie and I at Trader Joe's this evening, filling a shopping basket with more than a dozen sundry comestible items: There are as many aides in Charlie's class as there are students, plus the teacher, speech therapists, OT, Applied PE teacher, not to mention the art teacher: Charlie just started doing art last week---modeling clay and painting----but the main thing is, Charlie is enjoying art class. This is a bit of a surprise, as the report about art class form his previous public school tended to include the phrase "an incident occurred" (of a "challenging behavioral" nature). (I forgot to send in a shirt for a smock and so spent some of the evening scrubbing his clothes.)

The clerk, who was vaguely college-aged, balked visibly at the sight of all those boxes. "For his teachers," I said, gesturing at Charlie, who was trying to get behind the clerk.

Charlie had just delivered a bag of tea and candy to his Lovaas/ABA therapists; despite my repeated requests, he had placed it on the floor, equidistant from his home coordinator's desk and the couch in her office. He did puzzles while we talked about his sight words (15!), his practicing for the next visit to the dentist, his loud and clear speech, his growing interest in playing games with someone else. Interfused was discussion about how to cope with his anxieties about the upcoming winter vacation and a cross-continental airplane trip on Saturday to California to see my extended family. Charlie does not (at this time) wear headphones and his interest in any DVD seems to be for a maximum of 7 minutes: We talked about getting travel-sized puzzles and making puzzles, coloring (maybe the newfound interest in art will surface on the plane.....), calendars so Charlie will know precisely how long the visit and time off from school will last.........

It was a conversation, not so much an ABA clinic meeting. Later, as I asked Charlie to pick up the bag with the dozen-plus boxes of tea, I thought about my long-ago refusal to have "strangers" in our house---Charlie's therapists and teachers inevitably become part of one big Autismland family, if I may get a little sentimental (it is the holidays). Those "strangers" have become "unstrangers," who once seemed foreign, seemed outsiders, seemed strange---just as autistic persons have been considered strange, unusual, foreign, abnormal, and are now (one hopes, however slowly, slowly) "familiar and understandable, rather than a mystery."

Living with Charlie, trying to find my way in Autismland, has often seemed such an experience of the "strange" (I had no idea what autism was prior to learning that Charlie "had it") becoming unstrange: There is much about Charlie I do not understand, may well never (what does he see when I point to the words in a book? Why does he get that nirvana-look when he sinks himself to the bottom of the deep end?). But Charlie has shown me how much that I had thought familiar is not such at all. I never find a supermarket boring now, but see it as the supercharged riot of colors, smells, textures, tastes, temptations, pleasure-palace, that it is to Charlie, a child who

took bedfellows for moons mountains for friends

That quote is from the poet e.e. cummings and the quote about the "familiar, understandable, mystery" is from Roy Richard Grinker's explanation about the title of his forthcoming book, Unstange Minds: Remapping the World of Autism. Grinker, whose older daughter has autism, uses the word "unstrange" to express how "as the general public learns to understand and appreciate people with autism, the autistic person is no longer strange or foreign"; is "unstrange"----a far different way of looking at autism, and autistic persons, than expressed in Maurice's Let Me Hear Your Voice: A Family's Triumph Over Autism that Jim and I read seven-plus years ago.

Maurice wrote of recovery from autism via ABA, of children acting always "appropriately" and becoming "normal," and losing their autism diagnosis. "Unstrange" rather captures something that is much more of the essence of Charlie, whose differences we seek not so much to iron out as to weave into the pattern that can best enable Charlie and all of his potential to be seen. Similarly, I have seen Charlie's Lovaas ABA therapy shift from being all about recovery and a child being always "appropriate" to being a form of ultra-invidualized and structured teaching that seeks to capitalize on his strengths and bolster his talents, all through the hard work

(if you can
withholding nothing)

of the many unstrangers who have walked in through our front door.

Charlie often opens it himself now.

Interview for the Autismland Fellow-ship (#512)

While Charlie was in the shower crumbling my big blue bar of soap into bits that he shoved down the drain, I was putting together questions for a mock interview for a certain scholarship, for one of my students.

Charlie got out of the shower, stood around with his pajamas at his feet, and---when I coughed (after just failing to suppress it)---he scream-cried, a loud, desperate, keening wail that was wordless and yet said more than the picture's proverbial thousand: Did something hurt? Was he just annoyed at the world? Is he coming down with a cold? Was his stomach hurting from all the frozen bread he had grabbed from the freezer (it was meant for his grandparents' meals)? Was he sad and mad that, after a very nice morning, his schoolday became like "one of those days he used to have"? (Another student cried out and Charlie did the same instaneously---his teacher usually has him ask for a break and he gets to leave the room---and, as he was back-flipping, he could not leave the room. He calmed and had lunch, but the other student again cried out and Charlie again went to the floor, and then did Distar, and then cried out and back-arched again, and seemed like he would end the day in peace but his forces failed him at the very end, and the bus driver made a point of assuring me how well Charlie had done on the bus (all smiles, he had been). )

Charlie simply stood and screamed and I tried not to talk much (if at all), suspecting that at these times especially, my words sounds like so many clanging cymbals. He practiced piano with me offering as minimally loud praise as I might; he started a puzzle of a spaceship (still weeping, but more quietly) and carefully put together the lower left hand corner over and over: It was white swirl of a galaxy, edged with a fluttering line.

I don't know what Charlie was thinking in the silence---maybe about those lovely white oval forms on the murky "space" background?---but it had been yet another of those "just got to endure it" experiences that make one qualified for the Autismland Fellow-ship.

If you'd like to see if you are a viable member, here are interview questions for anyone interesting in applying for this award. (They are the interview questions I devised for my student, revised for the Autismland crowd; please don't hesitate to answer any you may wish to in the comments!)

---

Interview Questions for Autismland Fellow-ship

Starting questions:
What is your most significant achievement?
What has shaped you?
Name the person who has done the most to help you achieve all that you have.
What is the most controversial thing you have every done?
What was your biggest moral dilemma and how did you resolve it?
What was your worst failure and what did you learn from it?
How do you want to make a difference in the world?

"Charlie" is my answer, or is in my answer, to most of these.

School
Why did you choose to go to live in the town where you do?
What "disciplines" or "professions" have you had to acquire amateur ability in as an Autismland parent?

See these synonyms for a partial answer.

Books
What other books about autism do you enjoy? [See right sidebar.]
The metaphor of traveling to Holland has been used to describe what it is like to be autistic. How do you feel about being in a country whose language you do not know?
"Science moves the world": Does this statement apply to Autismland?

Current Events
Do you think autism is genetic?
What is your position on mercury and vaccines in regard to autism?
How do you account for the prevalence of autism today?
Is there an autism epidemic?
Name one famous autistic person who is not Temple Grandin.

Autismland Fellow-ship
Describe the ideal Autismland parent.
Describe a good day (not the best day ever) with your autistic child.
Describe how living in Autismland has changed and transformed you.

---

Jim always tells me that an interview is just another day in your life----if so, we are all winners of the Autismland Fellow-ship and every moment with Charlie, however loud and long, the finest prize.

A Most Interesting Kid (#503)

He stands in the driveway, face frowning: The white car (Grandpa's car that he no longer drives) is not in its customary place by my black one.

He says "NO" when I say "bike ride with Dad."

He puts on glasses and gloves and pulls at the Batman patches on his palms. "Other way" I say and turn them around. The white car returns; soon I am standing in the street to call out "all clear!" so Charlie can ride bikes with his dad, fast and flat.

He ignores the provisions of a too well-stocked refrigerator and ferrets out one thing: A container of watermelon, half-concealed in a bin.

He slips under Jim's arm to get the window seat on the train.

He walks ahead, alert, through the subway station and up to street level: Cars sit in Columbus Circle and marathoners walk by draped in metallic throws (like the Teletubbies' blankets, with sponsors' names in full display). Charlie's radar is up and takes him right to a whale of a sushi case, where he halts and his eyes scan the choices----eel? California roll? all vegetables? brown rice? tuna salmon shrimp?----and he picks up a pack and holds it to his nose.

He pulls so hard on Jim's arm that he is standing slantwise: A brown poodle is walking towards us and Charlie's dog fear is up. We keep walking south, Charlie's eyes skirting sidewalks and storefronts.

He shakes hands with Kamran Nazeer, boards a crowded subway car, and runs through Penn Station to catch a train back home.

"Eat fries! Guacamolay!" (Everyone on that train knows what Charlie wants.)

(I also get him a cup of salsa, a new food interest.)

Somehow he takes three showers: This is a boy who likes the water and what's a mother to argue again a child wanting to be clean as the proverbial whistle.

Jim offers Charlie a piggy back and Charlie says "yes." Charlie hops up on our bed and Jim offers his back----Charlie grabs the hem of Jim's shirt and calls out "S'irt off! Daddy s'irt off!" (Charlie had been asking him a few minutes earlier to do this, as Dad In Bed With Shirt Off is part of the morning routine that Charlie seems to have taking a liking to.) Charlie chases after Jim who responds with a surprise tickle; Charlie grabs the bottom of Jim's shirt and laughs, runs off. Jim is laughing, Charlie laughs, we all laugh.

Charlie has written no books, shot no 20 points as the clock ticked down in a basketball game; there have been times----months--moments---years---when Charlie seemed "severe and profound: (what could I say to explain the bruise he used to wear on his forehead, day after day after day). There has been turnaround, progression, piano, and a multi-dimensional neurodiverse and rainbow-rich life beyond dreams, human or android.

Thanks to a most interesting kid.

As Far As I Can Tell (#495)

"You're going to feel a big let done once this is all over," more than a few people said to us and especially to Jim in regard to Friday's Autism and Advocacy conference.

It is only the day after the conference and we are still "feeling the good spirit" or, as I rather like to think, "the buzz" from being in a room with a couple of hundred people and listening and talking and thinking about the one thing that brought us all together:

Autism.

I will be writing about the different panels and speakers over on Autism Vox for the next few days (this is what I said for the closing reflection, and this is a wrap-up of the panel Advocacy and Presence: Communities of Faith Engaging Autism, the conference's morning panel). During the second panel, "The Varieties of Autism Advocacy," a very engaged and often passionate discussion ensued regarding what I think is one of the more contentious issues out there in Autismland, and that is variously phrased as:

• Accepting one's child being autistic with all of his or her quirks vs. trying to make one's child "indistinguishable" and always acting "appropriately"


• "Intervening" in one's child autism vs. letting him or her "be"


• Acknowledging one's child right to be autistic as he or she is vs. believing in the necessity of changing him or her to "fit in" and be "normal"


• Letting a child engage in humming, flapping, and other self-stimulatory behaviors vs. teaching a child not to engage in those behaviors


• To cure or not to cure?

These questions arose in the wake of Kassiane Alexandra Sibley's speech, which began with her clapping her hands LOUDLY in front of her face and saying, "This hurts!" and holding up the plastic-encased cards she carries with her, one of which says "I am autistic," and then speaking very forcefully, always compellingly, and often movingly, and no more so than when she mentioned the Autism Every Day video, criticized it and Autism Speaks. and then the death of Katherine McCarron. I very much wish to know what Kassiane's own view of the exchange with her and various members of the audience and the other panelists (the four of whom were parents of autistic children).

One parent described her own child in words that reminded me more than a little of Charlie, in regard to very limited communication skills, difficult behaviors, and his need for lifelong care. I walk in her shoes: Charlie traveling alone across the country on an airplane to give a speech at a conference as Kassiane did seems rather an unlikely image, as far as I can tell.

As far as I can tell: I quote the words of one of the conference attendees, J. Kevin Vasey, who co-authored The Road Trip: Life with Autism with his mother, Gloria Pearson-Vasey. Kevin does not speak and who writes on a keyboard, and "as far as I can tell" is, as his mother noted at the reading that my sister mom-blogger posted about, along with a description of where her daughter M. is right now. Kevin is 37 years old, the same age as me. He sat in the third row between his parents for the entire conference, right behind a friend of ours who happened to be wearing the same color shirt. I was not able to speak too long to Gloria or to her husband Jim or to Kevin, but I felt their presence more than strongly, and became attuned to the shifts of expression in Kevin's face---in his eyes and cheeks---and in the movements of his fingers. He sat forward more in his seat at times (when Gloria read his writing at the reading, in particular) and, though he said no words, his presence emanated throughout the whole day.

I should not be surprised at this: Kevin's is the language, expressed through the whole body in ways subtle and sometimes more obvious, that is Charlie's too.

Jim and I did not see Charlie from Thursday morning until we returned home at midnight on Friday. On Thursday night when we picked up Bruce Mills and Kassiane at the airport and for all of Friday, the day of the conference, we were in hyperverbal mode: We talked, we listened to so many other people talking. we talked, they talked, there was too much to talk about.

This morning, Charlie came into our room with a grin and then, after bounding under the covers, told Jim "shirt off! socks off!" Then it was "b'ack car, b'ack car" and off he and Jim went for a ride in the rain. While Jim and I picked up another conference attendee and parent, theology professor Tom Reynolds of St. Norbert's College, Charlie spent the day with my parents, going to Manhattan on the train and meeting my two aunts. Jim and I made our way back to Fordham's Bronx campus to attend to some details and then met up with a consternated Charlie who, as my mom made clear when she called at 8pm, "misses you and Jim."

The three of us did what we have done so many a time in our lives together: Got in the car and went for a ride. "Musix," said Charlie "Turnonn."

"Jimi Hendrix?" asked Jim.

"Hendricks?" said Charlie.

Back at home, Charlie ran back and forth in the shower stall very gleefully and pulled at my arm---"Turn on!"---until I showed him pictures on my computer, including some from the picture presentation of autistic persons that was shown at the conference. Then he jumped into bed and rolled and kicked and pulled the blankets out all over the place and lost track of the green squishy ball in the sheets. Sounds and phrases of sounds were uttered melodiously, and back and forth, by Charlie and by me in the non-verbal exchanges that could be considered conversations between us.

I ended my closing reflections for the conference by referring to one of these conversations that Charlie and I have. The one I spoke of did involve words---"hepp" and "I needepp" as said by Charlie---but relied just as much on the same sorts of musical phrasings and tones that make up the wordless conversations Charlie and I had tonight. As far as I can tell.

And, as far as I can tell, if you had told my two aunts in their colorful sweaters and my parents that the very, very shy and quiet girl who preferred to read books and never ventured beyond her driveway would speak up, and would speak before a crowd of people in an amphitheatre on a university campus in Manhattan, and about the Latin and Greek roots of words, about autism, and advocacy----they would have found that a most unlikely image. Ridiculous, even. Impossible.

As far as I can tell.

Marked Priority (#465)

"Wahlk!" proclaimed Charlie after dinner. I handed him his blue hooded fleece sweatshirt, which we discovered he had put on backwards when he found the hood cradling his chin.

"S'irt bakkwards!" grinned Charlie and we were both laughing. Charlie pulled it off and then back on the right way and out we went, just before twilight. He wanted to walk right, which is towards the train station. He skipped, hands in his front pocket, ahead of me, lightly, and I followed, curious to see where this might be headed.

At the station, Charlie affected his usual postures: Running the length of the platform with his head at a just-so angle, warbling. Sitting quietly on a bench, hands in his pockets, questioning gaze aimed towards me. Rising as the train pulled in and wading his way amid the crowd of commuters, eyes ahead and looking for his dad.

Who, due to his taking the white car, was not on the train, which fact I tried to say/half-yell/communicate to Charlie amid the clank and growls of the train machinery and the numerous business-attired adults in search of their ride home. Charlie, his mouth in an almost-O, looked a little more than woebegone as his flicked his eyes from side to side but there was no Daddy.

"Charlie, Daddy is working late tonight. He's still in New York!" Said I some half-dozen times in my cherrily upbeat voice---no room on this train platform for a tantrum and certainly not like the one that Charlie had when he was seven in the Newark train station atop a manhole cover. "Let's go home."

It was getting dark. The streets are wide where we live but there is no sidewalk in some parts of the road and I made an elaborate show of saying "Let's walk on the grass" when I sighted headlights before or behind us. Charlie only did so after some forcefully gentle pressure on his arm the first time, then immediately stepped onto neighbors' lawns when I repeated my request. After a minute, I could see that the corners of his mouth were turned up in a smile: He had done it. He had turned around without incident.

But am I shooting too low to be so happy just for this?

After he got home from school, Charlie and I had gone to the town library. He had gone a few times with his summer school class and immediately turned his footsteps towards the children's section, and then all the way to the back, where there is some carpeting embossed with the letters of the alphabet and a bead coaster. Charlie went down and up the little steps and then paced the aisles, eyes on nary a book. I scanned the shelves of picture books and tried to call him over: "How about Spot? very hungry insects? maybe not Angelina ballerina...." No reponse. Finally I chose a book about trains called Choo Choo and held the cover up to pacing Charlie. "What letter?" "See-ee." "What letter?" "Ayss." He did some more pacing, a bit more quietly, as I, as happy to be among books as Charlie is non-committal, searched in the new book section.

Would I be more happy if Charlie had poked at the picture books and pulled several out, or made his way to the Young Readers section and clamored to take out just one more book? (As seemingly every other child in the library was doing.) Should I be spending every waking and sleeping moment scheming about "how do we teach Charlie to read?", as if Charlie does not already have extensive programs in place in school and in his home ABA sessions to do just this?

I hope that, after all these years in Autismland, and especially after the last two years, I have learned to get my priorities straight. Charlie has his, already.