We Go With Him

No Kung Fu Panda 2 For Us

As the above photo attests, the bike trail won over the beach yesterday. The temperature was into the low 90s degrees Fahrenheit so a dip in the ocean would have been welcome, but it was not to be.

On the other hand, driving out to New Jersey horse country where the bike trail is and, later on Sunday, in central Jersey and then (even later) just across the Hudson River from lower Manhattan (you would not believe how many miles the white car has on it), we noted how light the traffic was. If everyone was elsewhere -- i.e., down the shore or en route down the shore -- better we were not on the road, sitting in traffic.

Indeed, Jim started crafting plans to go to the beach on weekdays, when the traffic will be lighter. He and Charlie both share a deep-set love of being in motion. (This post, by the way, describes some of how Jim taught Charlie to ride his bike.)

As we drove, I noted a couple of billboards with big greenish eyes tested into a fierce expression: Ads for Kung Fu Panda 2. I felt a bit wistful as that was the last movie Charlie and I saw in a theater. He got through the whole thing and then, on the way home, got sick in the car.

The movie's many video game-like scenes may have made him queasy, not to mention the very loud sound effects and the whole over-loaded sensory experience of being in a movie theater packed with children (some little ones crying -- there were some frightening moments in Kung Fu Panda the first). Charlie likes motion, but not seeing all kinds of colored images flash and pass in front of him on a movie screen; he likes to be moving himself. I've kept all this in mind and Charlie himself has not said a firm 'no' when we've driven past movie theaters. 

When he was younger, we felt that 'seeing movies in a theater' was something we had to teach Charlie to do. But doing so must have always been not simply trying for him, but just overwhelming; some adults on the autism spectrum have since said to me that being in a movie theater is just too much, with the heightened sounds, the smells, the huge screen and all. I guess Charlie has somewhat joined the trend of people who, thanks to DVDs and (for sure) iPads and Netflix and the like can just watch what he wants, when he wants, anywhere.

That would be either the back seat of the white car or home in his room for Charlie. After 20 miles over two bike rides -- nice and cool by the river around noon, hot and wearisome in our neighborhood in the later afternoon -- Charlie and Jim were in need of 'down time.' There's not the need we used to have to constantly check in on Charlie as when he was little; yesterday afternoon, I did catch a quick glimpse into his room: Charlie was relaxing, unwinding, with some jazz music ('Blues and the Abstract Truth') playing. After a few minutes, I heard another jazz musician, Sugarcane Harris.

Bike rides on a lovely verdant nature trail and listening to good music (and eating quite a bit, a given for Our Growing Boy): Not a bad way to spend a holiday weekend.

And, no traffic jams.

Tragedy Into Comedy

As a final assignment, I asked the students in my summer school class on ancient Greek drama to write about what they understand 'tragedy' and 'comedy' to mean; to describe a movie that they consider a tragedy and another that they consider a comedy; and to write about an experience that could be considered 'tragic' but that they were able to get through by having a sense of humor---by referring to comedy. As expected, I had not heard of many of the movies they mentioned (and seen none except for West Side Story). The students' responses to the last question were often the briefest, but the ones that left me with the most to think on.

I had this post, Autism: Not Exactly Heaven on Earth But Not a Daily Hell (written just over 5 years ago, on the 25th of July, 2005), in mind when I composed the 3rd question about 'an experience that could be considered "tragic" but that they were able to get through by having a sense of humor'; of the comedy of it all.

I'm so used to hearing about autism as a tragedy. Even with all the difficult things that have happened to Charlie and us, I know that it is not. For me, even the worst, worst moments become tempered, infinitesimally at first and then more and more over time thanks to small doses of comedy; of understanding how we regularly encounter la comédie humaine in all of its glory and its dirt, its gold and dross, in our basic daily doings with Charlie.

Buying (or rather, attempting not to buy), a red box of brownies.

Going on a walk. On walks.

Dealing with garbage.

Indeed, the last-linked post, Sleeping With the Garbage, was subtitled Notes Toward the Autism Comedy. Five years ago, I wrote about a period when:

 

Five out of seven evenings, Charlie picks up the kitchen garbage can--lock, stock, and barrel full of apple cores, coffee grounds, empty juice packs, junk (snail) mail, uneaten cereal and hot dogs--and carries it, in happy glee, to the foot of his bed. After he's asleep, I sneak the garbage back downstairs, tie up the bag, and Jim takes it out in the middle of the night.

 

Whether you're disgusted, or baffled, or pitying we who, in the middle of the night, hasten out to the driveway with a smelly trash bag---we've grown accustomed to a certain laugh-with-sigh combo when Charlie stomps past us, can in hand, and mounts the stairs. Jim used to groan at the scent of my "graduate student coffee" infusing our living quarters, but Charlie does not seem to mind the scent of day-old fish fillets one iota.

 

As to why Charlie, back in July of 2005, felt that he had to to sleep with the kitchen garbage can at the foot of his bed, you may read the rest here. Over the years, there's been many a thing that Charlie has done that isecht Charlie to Jim and me, and that once caused us to fret mightily, and then somehow faded away and became the stuff of family history and, yes, shared chuckles between Jim and me.

'Do you remember how he used to....'

'And we used to have to......'

'And the time that you had to hammer.....'

Charlie himself seems to think it's funny to mention the things that used to bother him and, well, not be bothered. This afternoon (after furious-fast bike ride #1) he was using the computer and suddenly, on catching my eye, said,

'Barney.'

At one point I had a whole didactic spiel and would go into how 'we used to have Barney and now he is OLDer and we DON't.' Now I find that something a little more simple does the trick. So I responded:

'Yeh, Barney.'

Charlie grinned and said, a little more slowly,

'Bar-ney......'

To which I replied, echoing his intonation,

'Bar-ney......'

'Barney, Baby Bop, BJ!' (Haha we don't have the plate anymore with Barney and Baby Bop or the videos or the stuffed Barney and it's okay haha!).

Well, that parentheses is what I think is Charlie's tragedy-into-comedy spin on the loss of the Purple One and the accompanying Backyard Gang. Certainly it seems that Charlie is as tickled pink as Jim and I are, to see how he's now able to talk about past sorrows and even to laugh at them.

Earlier in the day Charlie had had to deal with something that most definitely makes him nervous, anxious, and the like. A therapy dog visited his school. Charlie would not (as his teacher wrote) go into the room with the dog, but he did stand outside it the whole time his classmates were checking said Fido out. Perhaps one day he'll look back and laugh at how he once had severe dog-fear---severe enough that for a time, on meeting Fido, he was running, or jumping off his bike lickety-split across the street without bothering to check for cars.

Before abandoning the bike Charlie always (as Jim related) put down the kickstand and left it carefully parked, albeit sometimes in the middle of the street.

Things like that are one reason why I wrote that:

 

even on the tough days, as chronicled in Why Charlie might sometimes be a tiger, but never a tragedy (#15) and Not a bathroom story; or, more on Charlie's words (#11), I know my life with Charlie--Jim and I know our life with Charlie--is the best that can be, and we only love our feisty guy all the more in his struggles as much as his triumphs. Some call autism 'a daily hell' on a par with the suffering of the inhabitants of Dante's Inferno. I have tried to show that, while Charlie's and our days are rife with awful, messy doings that contain words like "self-injurious," "helmet," and "severe," life with autism, however tough and messy (literally and figuratively) is not a tragedy.

When a child is diagnosed with autism, one can never think (as Dante read on the gateway as he was about to enter the Inferno) "Abandon every hope, who enter here" (Canto III.9).

 

We get new hope all the time from Charlie who, against some very tremendous odds, continues to show that he can learn and grow and laugh at his former woes. And get us to laugh with him, too.

Nothing Like the Real Thing

Yesterday I was reminded how far outside of mainstream popular culture is the world in which we live.

I was at work, attending two presentations by guest lecturers. The first was on diseases of U.S. Presidents: Did health issues ranging from throat cancer (Ulysses S. Grant) to obesity and cancer of the mouth (William H. Taft) to polio (FDR) to Addison's disease (JFK) have an (adverse) affect on the fitness of Presidents to govern? How open were the Presidents about their illnesses?---Not very, the lecturer noted. While depression was mentioned a few times, mental health---Nixon having been possibly bipolar and/or manic depressive, it was noted---was brought up quite quickly and then another topic referred to.

Jim and I have been suspecting an additional diagnosis of bipolar disorder for Charlie. Certainly he can be Mr. Mercurial, with dramatic, extremely fast mood changes and every couple of weeks he seems to have an absolute thirst for lots of intense exercise, while sleeping very little. As you can see by my just having written what I did, we're hardly clandestine about such concerns. True, Charlie's health doesn't have an impact of world events or US politics but I still think it's important to be open about talking about mental and neurological health, and about letting go of any shame or stigma surrounding it.

Anyways anyways. The second presentation was about making movies, and specifically science documentaries such as you might see on TV or at a science museum. This presentation was, not surprisingly, graphics-and media-rich and, listening and watching, I really felt like a Martian on planet American pop culture:

1) We don't have a TV set, nor do we have cable.

2) This is not to say that we are media-deprived. Quite to the contrary, the three of us get liberal dosings of YouTube and news and the like thanks to the Internet and the too-many laptops and electronic devices in this household.

3) We actually have a TV set but it's broken and in the basement.

4) We also actually had Comcast once upon a few years ago but they somehow gave our box's number to another customer, our service only worked sporadically as a result, we weren't even living in this house at that time so we just let it go until we realized, hey! Talk about getting gypped! But the day-to-day of life made us take the simplest route: Cancel Comcast.

4.5) As in, cancel Comcast like, forevah.

5) My first reaction about a clip from House was hey! Since when have two residents ever come to see Charlie to figure out what the problem is; we're usually lucky to see a doctor in the ER for all of 7 minutes, in 4 separate intervals.

6) I know the Internet is rife with clips of X-rated stuff that anyone could stumble upon but my goodness, watching an opening sex scene (between two 'college students' in a very tidy and large dorm room) on the House clip made me feel that there are some things I'm glad I don't have to explain about to Charlie, at least not yet. 

7) Seeing a clip  from Warehouse 13 when 'Joshua' appears after a young woman starts coughing and going into a bit of a 'state' made me think, feeling a neurological storm surging in Charlie is a total lot scarier. 

8) Having dealt with said neurological storms in our car (occasionally when it's been moving), a scene from Trauma with a bus crashing into an ambulance was not going to be my favorite. And the scene was shown again and again to show how the sound effects were created....

9) Charlie has never seen an IMAX movie and won't be for the time being. Movies in 'regular' theaters, not to mention the theater itself, are pure sensory overwhelm-ation for him.

10) I'm not sure that Jim has ever seen an IMAX movie either. I don't think he really wants to. 

I have, but I can take it or leave it. 

I suspect I sound like a curmudgeon. If things were different for Charlie, maybe we would all be visiting science museums regularly and I'd be installing a parental control filter on Charlie's computer. The three of us don't seem to have a need to watch shows or movies that look 'almost like real life.' I guess we just kind of go straight for the real thing. 

And as it was noted in the second presentation, many of the structures in sci-fi- and 'science-y' films are made of plastic and foam and paint---they're not real, themselves.

There's a reason Charlie likes the ocean and has been saying a definite NO to the swimming pool. He does like to watch some clips on YouTube but mostly he seems to like to go out into the actual world and walk, bike, and have a look around. 

If we hadn't been out Monday afternoon, he and I would not have spotted a ferris wheel rising above some trees a couple of towns away. After Jim came home and did a bike ride with Charlie, we went back to ride 'Big Eli' which turned out to be part of a carnival at a local festa, complete with a 'sing like Frank Sinatra' (Sinatra Idol?) contest and lots of good Italian food (Jim got some calamari; I was inclined to think that the Oriental Bar-B-Q and the Taste of Greek booths---the later staffed by some quite non-Greek looking persons, the former empty---were to be bypassed). Charlie did his favorites, that ferris wheel, the giant slide, and the swing, which was good and long and whipped him smiling around so fast he's just a blur in the photo above.

That really was what he looked like on that ride, though also with a very genuine, gleeful smile. He's just moving too fast for us to see.

Echt Charlie

I suppose it's no surprise that we went to the beach on Sunday, as we've been going down there most weekends this winter. Perhaps in anticipation, Charlie woke up around 7.30am and was raring to go at 8am. We weren't and Charlie---swimsuit clad and boogie board loaded into the trunk of the white car---managed the wait well. 

We had a happy ride down and, fortified by fare from the Golden Arches, Charlie walked though some hilly dunes over ice, slush and sand, to the beach. 

 

The ocean was flat as a table (direct quote from Jim) and a magnificent blue. We ran into a few other beach walkers and 3 dogs (2 unleashed---these were very small and not interested in tall boys, fortunately). However, no one but Charlie was properly attired for the beach, in the swimsuit department. 

(The boogie board remained by the white car.)

I've written tons about Charlie's love of the ocean and how he seems more himself, freer, more "able," there. There's something about these trips to the beach in the winter that seems "echt Charlie." "Echt"  being German for "genuine," as in "the genuine article"---nothing fake or counterfeit here. It's not just that Charlie (and Jim and I) love the beach. But going to the beach in the winter in the "off season," because Charlie (and we) feel so very at home there, is kind of what life with Charlie (in Autismland) is all about. And Charlie puts even more of his own stamp on the experience by not huddling up in a parka and sheepskin-lined boots and heavy pants. He does wear the parka (over his fleece jacket, same as he does on walks at home) but he's wearing the exact same shoes and socks (in the sizes he's now fitting) as he does in the summer and, of course, his swimsuit. 

 

Yes, we have tried to have Charlie wear snowboots and galoshes. He's kept those on for a few minutes and then changed back into his black shoes. 

As for the swimsuit: I'm assuming Charlie's legs below the knee were kinda cold, but he was smiling away and apparently could have cared less. Just in case, I carried his long pants and a change of socks. 

 

Note to self: Bring a change of shoes next time, as Charlie went straight through an icy, sandy pool on the walk back through the dunes. He didn't seem to mind having to walk back in soaking wet sandy shoes. Suspecting that he'd just put them on over his dry socks, I made sure to place them in the trunk and Charlie was ok with that.

It's not so easy getting Charlie not to do things as he's always wont to. I always know he wants to stay at home and just hang out when he takes off his shoes and socks; he doesn't always take off his shoes when he's at home and that says to me, he still has some energy and inclination to go out. His need for order can get in the way his better interests---wouldn't have been too good for him to wear home cold, wet, sandy, soggy shoes. And so raising Charlie often means a dance between accommodating and adapting ourselves to suit his "order," and nudging him in the way of letting go a little.

Saturday night at our friends' house, I watched a film called "Breaking Boundaries: The Art of Alex Masket"; the filmmaker, Dennis Connors, was one of the guests at our friends'. (Jim didn't get to see the film: He kindly insisted that I watch it and took Charlie on a spin in the white car.) 

Alex uses stickers of letters and numbers, markers, Legos, duct tape, and other materials to make art, some of which you can see here. One gallery owner interviewed in the film noted that Alex's work has a kind of "visual music" and, I think, this phrase describes the vivid sense of pattern---created through colors and shapes---in his work. I met Alex's mother, Elaine Masket, a few years ago at a listening tour at the offices of Senator Robert Menendez and I can't say how much I admired how fervent advocacy, and her honesty about her worries about what is going to happen to Alex (who was just about to turn 21 at the time, and therefore to transition out of school). I didn't realize Alex is an artist; while Charlie remains not terribly inclined towards art, Alex's use of colors and shapes and his ordering of these on a flat surface reminds me very much of how Charlie seems to order his world.

 

Here, his blue bookbag and the little green notebook that his teacher and I write back and forth to each other in.

And as far as expressing who he is in ways other than verbally: What else is Charlie, swimsuited up, at the ocean on a late February afternoon?

 

About That Autism Biopic

 I was a big fan of Claire Danes and My So-Called Life back in 1994. I was some years past the age of teenage angst, but Angela Chase's musings, grumblings, and yearnings still resonated with me.

Ever since hearing that Danes would be playing Temple Grandin in an HBO biopic, I've been trying to get my head around her as the "famous author and animal sciences professor" who is "a beloved figure, even a heroic one," in the words of the January 29th New York Times. To prepare for her part, Danes describes a six-hour meeting with Grandin, who talked about her sensory sensitivities and "about the way she perceives the world, how loud sounds, for instance, cause her physical pain, how she is always hyper-vigilant." At the end of the meeting, Grandin gave Danes a hug, with the actress noting "'You know, for her [Grandin], that’s not easy. So that was very moving for me. That was the validation that I was looking for.'" According to the New York Times, Grandin also gave Danes some rather cryptic advise about a "postpartum depression" letdown after making the film: "'[Grandin] told [Danes], ‘You must be very careful, because you are investing a lot of yourself in this, and there is going to be a fall, and you have to protect yourself from that.'” 

Understandable that Grandin would take the cinematic portrayal of her life so seriously. Danes's performance will certainly come under a lot of scrutiny for the "authenticity" and "accuracy" of her portrayal of an autistic woman. The  New York Times article emphasizes Danes's acting in the biopic for being "both emotionally transparent and intelligently complex"; a heightened ability to feel and sense and a highly original intelligence are the very qualities that are often said to stand out in Grandin. I'm sure there will be a plethora of comparisons to Dustin Hoffman in Rain Man and, inevitably, to Grandin on film herself, with individuals on the spectrum to families of children on the spectrum to professionals of all sorts weighing in. 

(I suppose it might give us all something else to blog about besides Dr. Wakefield......)

My own response will be a bit second-hand as ours is a TV-less household; I'll be viewing YouTube clips of the movie primarily. It's hard not to anticipate cringing a bit: I know it's just not possible for me to watch a movie about Temple Grandin's life as "entertainment" and "just a movie." Even if I'm only watching a snippet of the movie, my "but is that really what I'd like people to think about autism?" radar will be up. 

There's also a couple of references in the New York Times article about the movie being "inspirational," presumably because of its basic plotline of Grandin as a severely challenged child who grows up to achieve an unexpected, and highly unique, success. The film's plotline is (rather tongue-in-cheekly) summed up as "an autistic woman who beat the odds to revolutionize the slaughterhouse industry." Is it possible to have a popular story about autism in which an autistic individual doesn't exactly "beat the odds"? Or maybe a better way to put it is that "beating the odds" doesn't have to mean revolutionizing industrial practices regarding animal husbandry. More often around here, "beating the odds" simply means making  it through another day, working out a path for Charlie amid obstacles that most people wouldn't consider such.

In the case of Saturday morning, it was getting Charlie out of the gym of his school where he'd been peacefully participating in a basketball session---walking the track, dropping the ball into a hoop on the court floor---and then, after one too many requests to get up and play after one-minute breaks, he couldn't take it anymore. Jim got him out of the gym in a very unhappy state---all the more tough because Charlie had been doing good following instructions from someone he didn't know and, too, was at a new activity (and how off-putting to be inside his school on a Saturday morning). After too long, when Charlie was finally calm though shaken, Jim and I reminded each other that we don't know (who does) every last thing about autism, but we do know a great deal about Charlie. Eventually it would be good for him to do the activities with an aide, but the whole set-up of Saturday basketball was new to Charlie, and, as it was, many of the other kids were throwing around basketballs with their parents. Jim and I also reminded each other, better to quit while you're ahead---we should have left when Charlie was doing well (as another friend did with his son).

Because, "beating the odds" is not about staying to the end of a 45-minute session or about shooting a basket, or about revolutionizing industries or inventing new technologies. Often I'm reminded, if we can get Charlie and us through these adolescent and teenage years in (preferably) more or less one piece, I'll give us all the equivalent of an Academy Award.

Yes, "us." We're still that tight team o' three, meaning that Charlie upset means we're all shaken up. And it also means, we're sticking together, come what may. 

And so, rather than slump home and sigh behind a closed door, we ventured back to Red Hook in Brooklyn (Jim's giving a reading there on Wednesday) and then drove over to Chelsea Piers on the west side of Manhattan, and then back to Jersey---and a long (and, yes, cold) walk that we were all back inside. 

Not a storybook day but----pace, HBO---that's not what this blog proffers but rather, a very real life.

Once Upon A Very Unwild, Rainy, & Happy Saturday

Jim and I thought taking Charlie to see Where the Wild Things Are would be a good thing to do on a very, very rainy Saturday. We all slept in after a somewhat sleepless Thursday night. Charlie took awhile to wake up (and to transition out of sleeping mode), then got out the bikes while Jim made a post office run. The rain started falling again while Charlie and I were on the lookout for Jim but the clouds parted, the sun glimmered, and Charlie and Jim biked off. It did start to rain again on their ride home, but the bagel they brought me was still nice and dry.

I've been thinking of taking Charlie to see Where the Wild Things Are since hearing about the movie earlier this year. The last movie he and I saw was Kung Fu Panda in June of 2008. Charlie generally seems to follow movies and videos with live action and actors better than animated cartoons, and I felt hopeful that Where the Wild Things Are might appeal to him. But as I parked the car this afternoon, Charlie told me "no movie." As it's been a while since we've seen one, I suggested a compromise: We walk by the movie theater and then he could make a choice. He was amenable to this and so we got out and dodged raindrops until we came to the theater.

Even from the outside, I realized that we were approaching Sensory Overload Territory. Lights flashed from the video games in the lobby and the concessions stand and even from the street we could smell the popcorn and something cotton candy sweet. I pointed to the movie poster; Charlie glanced at it and said "no" yet again and I could only agree with him, and that our $30 (factoring in the price of two tickets, a soda, and popcorn---maybe it would have cost more?) could be better spent. We went back to the car and I mentioned a couple other places that we might visit. Charlie chose Target and we spent a happy half-hour wandering aimlessly and checking out all the DVDs and CDs (and one quick pass through the shoe section). Charlie chose a Disney Classics CD that he used to have; it got so scratched and smudged that it became unplayable a long time ago. He said "no" when I asked if he'd like a soda and, once home, he helped himself to what he found in the refrigerator (leftover Vietnamese noodles and some lactose-free ice cream), listened to part of the first song of the CD, and was content to spend the rest of the day at home while it thundered and poured outside.

Over the years, I've read Where the Wild Things Are to Charlie numerous times. I'm not quite sure what he made of the monsters or of Max in his wolf suit; the part of the book that usually made his eyes brighten up was when Max is in the sailboat that takes him to where the wild things are. The detailed lines and somewhat muted colors of the drawings never appealed to Charlie as much as the brighter colors and simpler forms in a book like Goodnight Moon. Also, the text of Goodnight Moon is written in something more like verse with rhymes, and is very much a listing of what's in the great green room, and not so much, like that of Where the Wild Things Are, a story.

We indeed read Goodnight Moon many more times to Charlie and at his request than we ever did Where the Wild Things Are. To this day, Goodnight Moon is the only book that Charlie has himself taken up and turned the pages of, often while "reciting" the text. (He sometimes asks me to write out a few phrases from the book for him, like "cow jumping over the moon.") And so it was that, after many readings, I finally acknowledged that my interest in Where the Wild Things Are was greater than Charlie's; that it was I who loved the book's last page which notes that, even though Max has been gone for a good long time, his supper is in his room "and it was still hot." 

Charlie, you could say, was being a good sport to tolerate his mother reading a book that she liked and wanted him to, I've so liked Where the Wild Things Are because, what can I say, I've often felt I'm (like Max's mother) the mother of my own "wild thing," if one can be allowed to use the term and understood to mean nothing disparaging by it, but rather much affection and indulgence. Charlie, my boy, has a great deal of Max in him. When he's in the midst of a "neurological storm," there is something more than a "wild rumpus" in our house or car. I'm quite sure that various neighbors and passers-by have harumphed under their breath that Charlie, overcome by anxiety and whatever is going on in his brain, is some misbehaving' wild (monster?) child, with indulgent, clueless, pitiable parents who need to do a better job controlling him.

All I know is that, however "wild" the moments and the ride with our boy, Jim and I always make sure that he not only has his supper, but that it's still hot. We're fine with  some wildness and even "wild rumpus" sort of activity here and there knowing as we do what a very great, special, lovely, etc. etc. etc. boy we've got. 

Love the Detour (#600)

.... love the detour. Take the longest route between two points, since the journey is the thing, a notion to which, contaminated by the Zen-fascist slogans of advertising (“just do it!”), we all pay lip service but few of us indulge.

I read those words---part of a book review in the February 11th New York Times by writer Will Blythe, the former literary editor of Esquire magazine---while looking over Jim's shoulder as we took New Jersey Transit late this afternoon----the three of us "indulging" ourselves in that "longest route between two points."

Charlie does love to be in motion, and the kind of motion provided by the networks of trains and subways and the PATH around New Jersey (where most commuter trains lead to New York) seems almost too well-suited for his "loco-motive" proclivities. If the two points today were "home house" and a certain restaurant in Hoboken where, last April, Charlie had had to be loaded, screeching and banging, into the car after we were told that the restaurant was closing early, then the obvious route was not the train-ride tour we embarked on today.

There are more than a few train lines here in New Jersey----some going down to the shore, some going northwest, some moving through central Jersey and near to Philadelphia---and we first had to drive to another town, climb the stairs past some dried-up weeds and a lot of litter, and take Train #1 down to central Jersey, and then a two-car shuttle (Train #2) that takes you to the edge of a university campus. We got out, and walked up to the library; I returned some books and noted that Charlie was sitting on the shiney lacquered square bench that I used to walk past several times a day, twenty years ago. I realized that the return train left in fifteen minutes and we walked briskly back. We took the shuttle back (Train #3) and then, on Train #4, Charlie sat up stiffly on his knees and looked out the window at a landscape of office buildings and suburban houses.

We ended up in Newark and Jim--"Now we're clicking!"---sighted what would be Train #5 awaiting us. Charlie nudged his way into the window seat and looked out earnestly at a network of steel bridges towers, the Pulaski Skyway, the vistas of shipping containers and cars awaiting their journeys to the hinterland, the Benjamin Moore plant, downtown Newark and---farther off---a church steeple and some business towers over in Jersey City, and then into Hoboken. The mile-square city is where On the Waterfront---directed by Elia Kazan and starring Marlon Brando as a broken down boxer and Karl Malden as the waterfront priest----was filmed; the book that Jim has been working on for much of Charlie's life starts with the real person, Fr. Pete Corridan, who was the model for Malden's role, and we walked down a cobblestone alley that appears in the movie, Jim recalling elements of the plot.

The yong Polish waitress looked surprised when we told her that Charlie needed a regular--"adult-size"---burger. After he had eaten every bite, munched his pickle, and requested "ketchuppp" several times from Jim, we walked back to the train station, just catching a glance of the Empire State Building across the Hudson. We had just missed a train so Jim directed us to the PATH. Train #6 took us to Journal Square in Jersey City and a long wait in the cold (there was no point in going up to the station, which is not heated). A young father, the back of his drooping jeans brightly embroidered, pushed a sleeping infant wrapped in fleece bunting, sleeper, hat, blankets, and a plastic covering over his stroller. Three Indian men in dark jackets and knit caps talked in a circle. Beside the graffitied wall, group of teenage girls each held a single flower (some looked as if they were made of paper) while one young woman checked her cell phone and jumped up and down to keep warm. Charlie started jumping too and grinning and I joined him (Jim didn't). The PATH (Train #7) finally came and we all pushed our way in.

Back in Newark, we got tickets for the final train, #8, while Charlie admired a display of cakes and cheesecakes. I reminded him that we had to go home "for blue blanket" and, pulling a long face (and after several requests from me), he followed us up the train platform, and then to the black car and back home to his own bed, well-provisioned with blankets, pillows, the calendar, the snowman. He pushed his feet and legs into Daddy's blue blanket which I had folded so it resembled a sleeping bag, all while humming Yellow Submarine.

It was a great Saturday trip, and a great day with Charlie.

Not that the trip, or our Saturday, came without its moments of anxiety (the garbage, where the blanket was), sticky fingers and misplaced mud. I am sure I will be writing more about these in the very near future---because isn't it all just part of the total experience of life with autism, which (for me) is a life full of detours, and dead-ends, and astonishing discoveries?

You travel, you come home.

In Autismland, the journey is the thing.

Another Day in Autismland (#580)

"I'm sorry we're meeting under these circumstances."

The mother of an autistic boy a few years older than Charlie said that to me back in 1999. She is the friend of a friend, very active, very informed; we were encouraged to call her. The sentence above was the first thing she said to me over the phone as I stood in the narrow room to the side of the front door that was Jim's study in our second-story apartment in St. Paul, where we lived at that time.

I don't remember what I mumbled. I said we were thinking of starting intensive ABA for Charlie and had started him on the gluten-free casein-free diet. She asked if I thought Charlie had any reaction to his vaccines. Jim and I were certainly aware of this---Andrew Wakefield's Lancet paper claiming a link between the MMR vaccine and autism had been published in February of 1998---but, wrack my thoughts as I might, my answer to her was "No."

"Charlie's always been Charlie," I said. I mentioned his 2-month-old baby photo in which he is tilting his head at a certain angle, his eyeballs looking as if they have slid all the way into the left corners of his eyes. I talked about how he used, when in utero and after breastfeeding while a baby, to arch his back just the same way he now did in the midst of his tantrums (which had become fierce) and when he was settling down in his bed (we had just gotten him out of his crib) to sleep. The other mother said something to the effect that yes, there had always been something different about her son, too.

Her initial statement has stayed with me over the years. "I'm sorry we're meeting under these circumstances"---that is, that we're only meeting because our lives have been affected by this dreadful thing that happened to us: Autism.

No, I think more than ever now. Thank goodness we're meeting, thank goodness we have met, and what do the circumstances matter?----The good thing is that, there are so many others to meet, who are autistic themselves, who are raising an autistic child and learning from and loving her or him, who have grown up with an autistic sibling, who teach autistic children. Maybe we do not agree about certain issues (like this one), but autism is a part of our lives, often the biggest part. We're the real (pardon the awkwardness of the expression) "Autism Every Day-ers," whose lives are threaded through with "the stress, the hope, the determination and, most of all, the love that is Autismland," as my blog-friend and fellow autism mom Mom-NOS wrote today.

Mom-NOS kindly quoted me being quoted in the New York Times today in an article about the new, longer version of the Autism Every Day video put out by Autism Speaks. I have yet to see the new version of the film (it has not yet been made available) and I am curious as to what has been added or altered to the original, shorter version with its "tone of hopelessness."

"Not every family has that perspective; it's only one part of a spectrum of views on what it is to live with autism" was another comment I made to the reporter and here is what Charlie, Jim and I did on yet another day in Autismland.

The melatonin has been working. Actually, I cannot believe that I just wrote that sentence: Charlie has had so many difficulties going to sleep for the past year plus, and he tends to have such unexpected reactions to medicine (I once gave him a dose of Benadryl and he became completely wide awake and very hyper), that Jim and I figured we would probably have to ask the neurologist about something "stronger." It has been some two weeks since we started giving Charlie melatonin around 9.30pm and--still quite fluff flew). He ran circles around the house and then lazed around, listening to me read him a Curious George book (although a casual observer might wonder about this, as Charlie is not looking at the words or pictures). Then he curled up under the covers of our bed and fell asleep.

Prior to the melatonin, if Charlie took even a half-hour nap during the day, he could not sleep until midnight at the earliest; we did everything we could to keep him awake when he showed signs of falling asleep. The result was, he would be tired and groggy and not in the best of moods for the rest of the day; if he did end up falling asleep, he seemed almost guaranteed to have a difficult day at school, as he would be extra-groggy in the morning.

"Let him be," I said to myself today. Charlie woke after an hour and a half, rolled over on his back and smiled, and hopped out to put on his shoes to go for a walk in a park with Jim. They came back just in time for Charlie's piano lesson; Charlie's teacher and I watched, and listened, with shared pleasure as he moved all of his fingers to play a short tune, all on his own. Before dinner, Jim and Charlie went on a walk to the train station---"one of our best walks ever," Jim proclaimed: Charlie wanted to see a train come but the wait would have been too long in the cold. Charlie ran out to get "Mexicann fwood" with Jim. "Mahm. Mom." Charlie tapped my right arm and gave me a long look with his big brown eyes and I held just the edge of his plate full of his rice, beans, salsa, and guacamole (which he ate in the reverse order). He bounced up and down on the couch while watching the Bears defeat the Saints. He called out the name of one of his aides at school and grinned when I mentioned the names of the others. He rolled in the fluff humming the tune to Sugarcane Harris's "Keep On Driving." Just before 10pm, he lay down on his bed and requested "Bankett," which I wrapped around him. "Goo' night."

Too all of you who are reading this, I'm very, very glad to have met you.

Some Boy (#547)

Write about the unstrangeness of autism and find yourself having a very strange day the next.

After Jim put him smiling on the bus, Charlie almost immediately fell into a deep, Rip Van Winkle-esque sleep at school. He went to the nurse and was found to have no temperature; he went back to his room and nothing, not even snack time, would wake him and I left work early to bring him home at 1pm. He immediately went through his lunch box and skipped off for a long walk that ended with a trip to the grocery store, came home and downed a pack of watermelon, several oranges, and a large roll before an ABA session that was full of talk: "P'ay with me! I want eat bread. I want break. Wash your hanns, I want walk, socks s'oos!" As I cooked dinner, he ran around the kitchen laughing and calling out "Kris-tee-nah! Kris-tee-nah! Kristia!"---only the second time that Charlie has ever said my name.

Then, even though it was a weeknight, Charlie and I went to a movie.

Whenever Charlie naps, his longstanding pattern is that it is almost impossible for him to go to sleep anytime before midnight. He had a few days in a row last week of going to sleep extremely late; I was hoping he might sleep in during the weekend, but he woke at 8am on both days. So (in keeping with another pattern I have often noted in Charlie) today I would say he had a delayed reaction to last week's lack of sleep: A five-hour nap at school.

Charlie was a great sleeper as a baby: He slept through the night at two months, he took regular naps after feeding. He did not seem to become hyper in the evening and run all over the house as he does now, but then Charlie did not walk until he was 15 months old and a wobbly boy he was, with impossibly long grasshopper legs and a large head to throw him off balance. This, along with the fact that Charlie did not have any words and only seemed to be saying one syllable ("dah"), suggested that "something" was going on.

So I found it quite inevitable to see more than a little of Charlie in Wilbur, the runt of the litter in Charlotte's Web. Shivering in Zuckerman's barn after Fern, the farmer's daughter who saves him from the ax, has had to give him up as her pet, Wilbur could only make me think of Charlie, big-eyed, hopeful, needing of help. Wilbur has no particular special talents---"savant" skills?---himself; it is Charlotte's web-creations with their simple messages---SOME PIG--RADIANT--HUMBLE---that broadcast to all who Wilbur really is. But the spinner of those word-webs is herself, in some ways, "disabled": Charlotte is feared by all the other animals because she is "ugly" (and saying she drinks insects' blood does not help); she is tiny and severely limited in her mobility (and hence dispatches Templeton the rat to the junk to find words).

Charlie loved Charlotte's Web. There was the familiar cast of farm animals. The humans' dialogue was in straightforward and simple sentences, the emotions communicated---fear, love, anger, joy----all familiar to Charlie. The scenes were all in a small and also familiar world: kitchen, bedroom, school, doctor's office, fair with rides (especially a ferris wheel), the barn (not that we, of course, have one). The pacing of the story was not hasty and special effects (penguins grooving in an iceberg-rave as in Happy Feet, which put Charlie to sleep) were minimal. Charlie asked for more popcorn, curled up in his seat for a few minutes, asked to use the bathroom, stood and watched, said "sit" and sat and stared with perfect concentration at the dénouément, when Charlotte gently expires (yes, I had to take off my glasses to wipe my eyes) and Wilbur watches over her egg sac of 514 baby spiders.

Charlie was completely entranced when those tiny spiders spun out their threads and took to the wind, small magical flying things.

We hurried back to the car, happy in the glow of a good movie experience. It would indeed be some hours before Charlie could sleep; as I look back on this day we spent together, walking and eating and watching and talking, I was reminded of what the unexpected---like words on a spider's web for a smallish pig---can bring:

Some radiant good times doing humble things.

Charlie's Web (#542)

As I have written before, Charlie is not a watcher of TV---for the past few months we have been having him simply practice watching the computer screen for a few minutes, usually by showing him websites with music and animation. He does seem to enjoy seeing movies in the theater, with the help of popcorn and a couple of walks in the back and the aisle. Movies that have a lot of music and color hold his attention a bit more: Once upon a time he was a stalwart fan of Barney, the Teletubbies, and the Wiggles, and what I remember (from all the videos I sat through for the nteenth time, asking questions of Charlie) is, indeed, the colors of the various foursomes and those songs.

Fruit salad! Yummy yummy.
Oh we are flying in an airplane looking out the window.....
Say heh-low! Eh-oh!
Yummy yummy.

Times have changed, Greg has left the Wiggles, and Dance with the Teletubbies is now on sale, used, at our town library for 50 cents. And I no longer know just what visual fare will catch Charlie's eye.

Charlie does like to watch a computer slideshow of the photos on my laptop, with music (a blues tune is his current favorite). He watched that tonight (over a few clementines) and then sat looking at the now-still screen. I came to sit next to him and went to a page with movie trailers. Eragon was dark and brown with just a few splashes of red, Very Serious Dialogue about Good and Evil. Bridge to Terabithia had more light, with lots of nature scene, and a rather confusing array of computer-animated woodland creatures (a walking tree drew an alarmed look onto Charlie's face). I clicked on Charlotte's Web---Trailer 2, a longer version---and Charlie, eyes big, sat still and focused and leaned forward when we went to the official movie site.

A pig, a horse, four sheep. A barn, yellow ducklings, a rat. A ferris wheel.

I remembered the plastic barn set and the pairs of mama and baby horses, cows and sheep, and the single pig and chicken I had bought in St. Paul, and with such a thrill. Charlie, several weeks into his intense in-home ABA program, was going to learn to play with toys other than the set of plastic stacking cups he built up, he took down, he built up, he took down, over, over, and over, and over again. Charlie was going to play with a real toy.

The college students who were his first ABA therapists loved to sit with Charlie and the barn after having spent the weeks teaching him to sit in the chair and imitate the dropping of blocks into buckets and how to wave. "Old McDonald had a farm," we sang. "Farmer in the dell, the farmer in the dell!" "Buck buck," we made the chicken say.

Charlie followed our lead, hitching the little wagon to the horse and stacking the bales of plastic hay in the barn. On his own, all the animals, the wagon, and the hay bales were set in one long and careful line. After learning to play a game we knew as Farm Families, Charlie got in the habit of lining up the mama and the baby animals and singing "Old McDonald Had a Farm," and that was all, unless we sat with him and drew him to do something else. The barn was long ago passed onto another young child or, I suppose, Charlie would still be lining up the animals and singing "Ee-eye-ee-eye-oh" and mooing and oink-oinking.

But the apparatus of the farm---the animals on their barn and the simple activities of animal-farm-play and his liking for it, gently evoked by those college girls, stuck. Charlie's eyes always perk up a bit when flashcards or a book or, in the case of Charlotte's Web, a movie offers those old friends.

Those old animal friends who are still part of Charlie's own web.