Yes, he shows empathy

At least, I think this means he does.

You may have heard that Michael Jackson has gone to the Great Moonwalk in the Sky (or perhaps it is the real Neverland). Unless you live on top of a mountain in Tibet, you're probably aware of his passing.

True confessions: I've never owned a single Michael Jackson recording and even though his successes were contemporary with my formative years, I never really cared much about him. I thought "Thriller" was novelty pop, and his music inspired no passions within me. And in spite of the fact that I know that pedophilia is a compulsion, I have zero sympathy or compassion for pedophiles, and I can't mentally erase "Jesus juice" from the history of MJ's life. There. I said it.

Anyway, I was reading tmz.com, as I do every evening because if you're gonna have junk food for the brain, may as well go for the best...and I was surfing it when TH came in. He saw a picture of MJ ca. 2008 and said, "Hey, is that the person who used to be brown but now is white? I've heard about him." (TH is very literal about skin color).

"Yes," I said. "He used to have darker skin and a different face." And I surfed over to handy Google images and googled up a comparison graphic of MJ pre-whitening/nose sharpening and MJ of more recent vintage and clownlike visage.

TH was intrigued. "How did he do that?! He looks like a white woman now."

"Plastic surgery and some skin treatments," I responded.

He pondered a bit. "Plastic surgery?" he said, a query in his voice. Then, after considering, he said, matter-of-factly, "He must not have liked himself very much."

(Did he have Daddy Joe to thank for that? Maybe.)

Now... that's empathy, right? Concise, insightful, in-the-other-person's-shoes, theory-of-the-minded empathy. So there.

A mind extraordinary

Speaking of Dubya...here's one of his latest artistic outputs. He'll be seven in September. We are not exactly sure where this particular talent of his comes from. We just know that neither of us did this kind of thing when we were six.

Door in the Hand?

Challenging

Vacation bible camp (VBC) is hit or miss for us. The kids do seem to remember the stories, but they feel as we do about the goofy songs, the made-up sign language, the practiced, prefab cheerfulness of it all. It's a good way to spend a few summer mornings and for our children to gain a passing understanding of some of the major biblical stories (and by passing, I mean that they sort of know who Moses is but get confused about reeds and baskets and pharaohs and golden calfs and the order in which these elements appear). In the midst of our discovery during VBC this year that TH's social skills were still a tad astray in novel situations, we also had a timely and interesting encounter with a veteran teacher who was veteran enough to know how to say exactly the right thing to us at exactly that time.

The final day of VBC, as we sat through the slide show in which TH appeared only as an anxiety-riddled frog-like creature huddled in a corner, face behind his hands, Mr. DMFP and I were understandably a bit anxiety riddled ourselves. It had been a strained morning for us, watching kids avoid TH, seeing him in the slide show like that. In the middle of all of it, there was Dubya. He'd had his BFF at VBC with him, so that helped smooth things a bit. He'd had a couple of great pictures in the slide show, photos highlighting his still-baby-boyish features and the intense, dark-lashed blue eyes he inherited from his father. And he'd sat by his brother, loading his plate with every sweet thing he could find on the breakfast buffet tables, thrilled that there were cinnamon rolls to be had.

On the first day of camp, I'd picked up the boys and encountered Dubya's VBC instructor. She was, she informed me, a retired preschool teacher. Dubya, she went on to inform me, was "an unusual mind, a really interesting mind, so bright and really thinking outside the box." "Phew," I'd responded, "I thought you were going to tell me he'd gotten out of hand or something." "No," she replied. "I really do well with the challenging kids." I paused, a beat, and then said, "I think you just told me that my son is challenging." I was...sort of...joking around. We both laughed, taking it in good spirit.

So, on that final day of camp, Mr. DMFP and I ran into Veteran Teacher again. She had come to the table where our sons sat alone, bringing with her another child. Suddenly, the table didn't seem quite so obviously empty. And as we stood there to bid goodbye, me at least with a huge knot in my gut, she chatted with us a bit, and then she said, gesturing toward our sons, "You know, these challenging, bright kids? They're the ones you want to have around, the really interesting ones. They're the ones who are going to do amazing things in this world someday, the big things."

And all I could think as I tried to untangle that ball of emotions in my gut, as I looked into her knowing eyes, cheerfully framed by her sun-wrinkled skin, was, Bless that woman for saying that, just at that time. It was the perfect tradeoff for a week of goofy, prefab bible school cheeriness and an anxiety-packed wrap-up. The next time Dubya engages in one of his more "challenging" behaviors--as he will likely have done by the time I finish typing this sentence--I will just remind myself that the boy's destined to do amazing things in this world someday. Veteran Teacher said so.

Our Circle of Friends thank-you letter

We sent out our Circle of Friends thank-you letters to the dozens of families who returned the signed form giving their child permission to participate in TH's circle. We also enclosed a gift certificate for a scoop of ice cream as part of our expression of gratitude, but of course anyone implementing Circle of Friends can forgo that and just send the thank you. I printed all the letters, Mr. DMFP and I both signed them, I read it to TH*, and we addressed and stamped and stuffed the envelopes and mailed them.

I thought that I'd post the letter in case anyone would like an example of what we've done to say thanks to the families who had it in their hearts to help out our son in this way.

Dear Second-grade Family:

At the beginning of this school year, you returned a permission form allowing your child to join a Circle of Friends for our son, T.H., who has Asperger’s Syndrome, a form of autism that manifests in part with social impairments. By inviting your child to participate in this program, we hoped to foster a better understanding of this developmental disorder and improve T.H.’s ability to interact with his peers. We are extremely grateful that 32 second graders were generous enough in their hearts to open the hand of friendship to T.H., including many in his own class.

Before we presented Circle of Friends to the second-grade classes, T.H. was struggling socially. He had difficulty interacting appropriately with other children, a common experience for children with Asperger’s, and his behavior had alienated him from his peers.

From the day we presented the Circle of Friends program to the classes, however, that changed. The increased understanding that the children showed our son translated into lessened anxiety for him, making him better able to focus on and practice the social skills that other children acquire automatically. Mrs. J., his teacher, described the difference in her classroom as “night and day.” As his schoolmates became more comfortable with T.H., he also became more comfortable and better able to integrate himself into the social dynamic of his peer group. We cannot express fully our appreciation to you and the other families who helped facilitate this change by allowing your children to participate in the Circle of Friends.

Throughout the school year, T.H. and various students who returned signed forms have participated in different activities together, including nature walks, butterfly husbandry, lunch bunch, and pairing for room deliveries and motor breaks. The school’s willingness to foster an atmosphere of understanding and introduce these activities certainly helped make the school year a positive experience for T.H., but it couldn’t have happened without you and your child’s willingness to be a friend. We are deeply grateful.

We hope that your child will enjoy a treat from us at our local Ben & Jerry’s. Please accept the enclosed gift certificate as a small expression of our thanks to you for helping make a profound difference for our son.

Have a great summer!

Best regards,
The Daisymayfattypants Family**

*You may notice a slight copy-editing discrepancy between how I type TH on this blog and how it is in the letter. That is because I'm married to a prescriptivist. If he had to type TH on a blog as often as I do, he'd drop the periods, too.

**Obviously, we did not actually sign off with this.

Outside the circle

We've forgotten. We've forgotten the days in San Francisco, for example, when TH was 3 and 4 and 5 years old and every visit to every playground had us on the edge, watching his every move for...That Moment when he freaked out some other child through a strange, prima facie antagonistic behavior, like waving a hand an inch from the child's face, responding with a bizarre non-sequitur to a child's perfectly reasonable overtures, running away and vocalizing like a chicken if a child approached.

How we managed to forget that, I'm not sure. But we have. Had.

TH has been in his current school now for three years. The kids know him. They know him especially well now that we explained something about TH using the Circle of Friends program. TH is as anxiety free there as he's capable of being. He still vocalizes and contorts his face and flaps his hands and does other things that draw attention at school, in restaurants, in church, but for the most part, we'd totally forgotten about how worried we always were when he entered into a new social milieu because it's been so long since we've done that.

The first two weeks of summer have reminded us.

We go to our neighborhood pool. Sometimes, there are kids TH knows. Those are good days, although he often will drift away from playing with them to play on his own. In his green goggles with his big head, he vocalizes loudly, the loudest child in the pool. But he's having a great time. That is, unless he's there among only strangers and some child approaches him and TH responds to the child's overtures with a bizarre nonsequitur or by streaking away through the water, making animal noises. Some children are merely bemused and back away slowly. Some take offense and try to engage TH in an exchange of insults. Unfortunately--or maybe it is fortunate--TH's responses to these insults are so enigmatic that the other child likely feels on the losing end, at the least for being unable to figure out what the hell TH just said.

Vacation bible camp this week handed us a few more reminders. Yesterday, TH had an experience straight from the pages of his personal history. Things were said. His made no sense, other children took offense, started calling him "stupid" and other things. This morning, we came to the final-day breakfast to watch a slide show of the kids while everyone snacked on muffins and juice. I watched in gut-wrenching pain as one child literally approached the table where TH sat alone, started to put down his plate, saw who was sitting there, and quickly decamped to a different table. I watched the slide show, the only picture of our older son one of him, sitting on the floor, long legs up in a frog posture, long-fingered hands covering his face, limbs all angled and akimbo, hiding from the camera.

Meanwhile, at two other tables full of happy, chatting children, the kids laughed and clapped to see themselves, talked with each other, behaved as "typical" children do. Our sons, Dubya and TH, sat side by side, alone for a long time at a table for eight, eating grapes and pigs-in-a-blanket, laughing together, apparently oblivious to their obvious isolation. Thank God they have each other.

TH has been doing so well in school on the heels of Circle of Friends. Academically, he's skyrocketed, probably in part because with his lower anxiety, he can actually function. He has friends, kids who get him and like him. But that was a three-year path to this sort of acceptance and understanding. These events of early summer are a clear reminder that when TH steps outside the circle, it's like he's stepped back in time.

As have we. Yes, we remember it now. In an echo of Apocalypse Now, I want to make it a mantra: Never get out of the circle. Do not get out of the circle.

Life does not, however, offer us the option of circumscribing existence in that way. With these fresh reminders come new questions: How do we equip him for life outside of the circle?

Mercurial?

Once upon a time, I worked for a state agency. There was a manager there whom I liked a great deal. During one of my final performance reviews with him before I departed to other things, he gave me a good review and then commented, "But you're so mercurial."

I'd maintained pretty well during the review, which was a good review, so maintaining was easy. But when he said that, I just about lost it. Mercurial?! I wanted to scream, putting proof to his words. You'd be mercurial, too, if your family were falling apart, if you were serving as a confidant to two people in the middle of a divorce who are among your closest relatives, if a close family member had tried to commit suicide several times in the previous months, if you yourself were going through an acrimonious divorce, if you yourself were in the midst of an enormous, risky career change. You'd be mercurial, too, if every phone call or email brought news that was either horrific or nauseating or the best thing you'd ever heard.

I didn't say all that. I just said that I had a lot going on and that things changed every day, meaning that my mood changed along with them.

Why am I telling you all of this, things that happened 18 years ago? Because in this world of autism and talk about mercury and understanding, the word mercurial has significance. No, I'm not actually talking about mercury the metal, although God knows that the mercury militia with their capacity to ramp it up to screeching in 60 nanoseconds qualify as mercurial. What got me thinking back to that experience was that I really did have excellent reasons for my swift changes in mood. There were very real things happening, things that took me high and then dragged me to the depths, sometimes within the space of minutes. My responses were completely rational. But my manager didn't understand my rapidly changing moods because he was ignorant of the very real triggers underlying them. All he saw were these "mercurial" behaviors. The effects of what was happening in my life at that time were so painful and stressful that I lost 30 pounds without even trying--that's how real they were. Not the best diet plan, that.

For autistic people, I suspect that the situation can be very much the same. To observers who aren't in the know, autistic behaviors can seem erratic, bizarre, unpredictable, irrational. No cause is evident. But I'd bet--I don't just bet, I know--that every single one of those behaviors has as real an underlying trigger as I had back in my "mercurial" days. And I'd bet that like me, a lot of autistic people won't or can't quite articulate everything that drives them or even clearly identify every trigger, not with the muddle of inputs coming at them all the time.

I don't limit it to autistic people or to myself, either. Have you had one of those encounters in which some random person, maybe in customer service, just seems pissed off at you? Or some asshole cuts you off in traffic, speeding their way to God knows where? I always try to remind myself that I do not know what is driving this behavior, but that I likely have nothing to do with it. Maybe their mother died yesterday. Maybe they just found out they have cancer. Maybe their child was just taken to the emergency room. Maybe what seems angry or jerky to me has a genuine underlying reason that I know nothing about.

Just something to remember as we make our way through the social connections of life. In the end, until we're dead, we're going to be mercurial at some point. In the end, the only person you can come close to understanding is You. Everyone else, autistic or not, is just a mercurial little mystery wrapped in an engima.

Pet shop boys

TH has awakened me--suddenly, with loudness and startling full-body contact--two mornings in a row at the buttcrack of dawn to talk to me about blue-tongued skinks. He's been online, doing research, reading all he could find out about them. We alighted on the skink because he wants a reptile or amphibian, and most of them require live food. Crickets, mealworms, waxworms, the like. That's fine, except that unless I want to culture mealworms myself, which I guess I could do, we have to drive to the pet store at least once a week and buy squiggly food. The skink, however, is an omnivore, and I was kind of looking forward to offloading old salad stuff on the thing. Perhaps it would show us its blue tongue as a reward.

Then, we found out that they "require" a four-foot-long habitat. As in, about as tall as Dubya, except horizontally on some nonexistent surface somewhere in our house.

And then we found out that they cost about 160 bucks, at least here in brutally, blisteringly hot Austin, Tex., which somewhere in the ~30 years I've known it has lost its cool.

I wasn't too pro on the skink thing, really, because I don't really think herps and people fit together that well, even though I love love love herps. Social animals domesticate better than the nonsocial kinds, which is why we get along so well with dogs and rats. Speaking of dogs, anyone seen Up? Squirrel!!

Speaking of rats, we were scoping out the local pet stores today on a quest for the perfect family pet after ruling out the blue-tongued skink, and we encountered a capybara on a leash at a PetSmart. For those out of the loop on the Rodentia taxon, the capybara is the world's largest rodent. By large, we mean that this thing could easily have taken on the labrador retriever that was barking at it in the store. The dog was at first confused, thinking that the capybara must be a dog. Then it got a whiff--one that must have loudly spoken of "Big Rodent" in the language of animal chemical signaling--and the lab went off as though it had seen...well...a rat. In a way, I guess it might have been like that labrador's worst nightmare, a rat that could beat the crap out of it.

But I digress. We sought a new pet on this excursion. We had a pet once, a dog who's left behind as her legacy the URL of this blog. Since then, we've had fish and hermit crabs, some of which have departed to the great Whelk Shell in the Sky. We've promised TH for a long time that when he turned 8, we'd consider a pet of his own.

The votes are in, and currently, we've got a three-way tie among Rat (Parents, Little), Tarantula (Dubya), and Frog (TH). TH also has lobbied for days for a centipede, followed by his serious Blue-tongued Skink Campaign of '09. Given that we, the parents, must purchase the food et al. for said pet, we're leaning firmly toward the kind of pet whose food is available in packaging that has the word "chow" on it. That translates into "rat," this time in the language of Parents Who Must Pay for Pet Food.

I bloggeth, therefore I am

I've got new posts a comin', but I've also got to link to a couple of other things I've been up to lately.

I'm guest blogging over at the American Journal of Bioethics blog and have already cut loose on a few opinions I've been forming lately.

And I've gone and submitted over at Can I Sit with You, always providing relatable tales from the trenches of the Bully Wars. Go read my entry, then stick around and read the others. Then consider purchasing a collection.

Finally, I've met my 50% deadline for a manuscript I'm working on for these folks. Naturally, I'm hyperparanoid that I've done it all wrong, but I did give it all I've got, so fingers crossed. Onward to the other 50%. Wish me luck.

Life's little lessons

I'm not sure I believe that life sends you lessons on purpose. But I do believe that we can learn lessons from what life sends us. Recently, life sent me a message that I have to slow the hell down. That's a hard lesson for this driven, uber-ambitious gal who used to work 14 hours a day just because, whose accountant told her just this year that there was no point in worrying about being independently wealthy because all I'd do with my spare time is work anyway (easy for him to say: he's an accountant).

Back in the day, the 14-hour-plus workdays, I might have overdone it. In fact, at one point, I overdid it to the edge of severe illness, coming down with a lingering and debilitating case of mono that hit me like a jungle fever and refused to let go for two months. I'd just come off teaching a class at Berkeley while working full-time as a postdoc at UCSF while also working half time writing and editing while also teaching an online genetics class for Berkeley while participating in a teaching fellowship program at SFSU while parenting two children and wifing one man and becoming transiently pregnant.

Then followed the mono and a miscarriage. I thought the episode, as dragging and depressing and horrific as it all was, had ended. But the presumptive Epstein-Barr virus had different ideas.

Within nine months, my thyroid had gone irrevocably insane, hyperactive and huge, requiring its entire removal. Within another year, I had other, ahem, things that had to be removed from Me. And then, exactly two years after Epstein-Barr felled me, my foot fired up with what has now been diagnosed as "myelopathy possibly secondary to multiple sclerosis."

In the ensuing months, I lost my ability to work past about 8 pm. I lost my energy. I learned that I had to work when I could because when I couldn't...I really really couldn't. I dropped some of the projects I was doing. I learned to try to do things the easy way when reasonable, rather than always taking the hard way. Life delivered me Epstein-Barr and a demyelinating disease, and I had a few lessons to learn.

I had to slow down.

So I did. And I looked around. Did you know that there are books to read out there that don't have to do with work? TV shows that are pretty decent that you can watch, sometimes back-to-back on DVR? Children who want to play chess or read with you or just snuggle in the quiet dark after bedtime? Probably you knew that. But it was a lesson I had to learn--not just intellectually understand but really learn and learn to appreciate--and life delivered it to me in the form of a virus and some genetic susceptibility. I did these things before--read, snuggled, watched TV, played chess--but always with half or more of my mind somewhere else and usually with a laptop in front of me. Now that I'm slow, I put my entire mind into it, which has opened up some interior space and made room for a little concept called "appreciation."

And now, I've slowed waaaay the hell down. I don't teach anymore...at the end of a modest day of teaching, I'd practically be in a physical coma, melted into the couch, barely able to move a limb. I have only jobs I take on, to work on, at home. I manage my time, even though really, time manages me. I've already figured out after one day of summer that we're going to have an on-off schedule: one day "on" for busy outside activities, and one day "off" so Mama can recuperate.

So even though I don't really think that some amorphous entity called Life or Fate writes out curricula with learning objectives for each of us, I do believe that those of us who are alert to learnable moments have much to learn from life's little deliverables. My lesson was probably obvious to anyone who knew me, but I needed something to force on the brakes that I refused to use on my own.

Slow. Down. Unless you're a turtle, this likely is a good lesson for any of us.

The crocodile stalks his prey

TH has an apparently unlimited capacity to play on his own. He had a half day on Friday (the school got its credit without having to go the full day). Dubya was invited to a friend's house for an end-of-school water gun party. TH's BFF was leaving town for the weekend. So, as a consolation prize to TH, I took him to "Austin's jewel," Barton Springs Pool, for the first time.

That water, by the way, is damned cold. Sixty-eight degrees Fahrenheit is not my thing. I get up to my ribs in that icebox, and I stop.

But TH took to it pretty well. He "crab walked" along the railings for a good hour. Then, he ended up in the shallow end and started talking to himself. People around him stared, but TH was oblivious. I approached to take a couple of pics to post to Facebook for family and friends and heard him saying, "The crocodile stalks his prey," in a perfect "National Geographic voiceover" intonation.

I lingered in his vicinity but left him alone, which is what he likes. Finally, a bit tired of being baked on my upper half by a relentless Texas summer sun and frozen in my netherregions by the icy temperature of the springs, I said, "TH, it's about time to go."

At that point, he'd started scuttling around in the shallows, both hands out of the water. With each hand, he was making a sort of puppet mouth and opening and closing his stiff fingers on his thumbs. When I spoke the "time to go" words, he said, "Awwww. I'm having so much fun!"

"What are you doing?" I asked, curious. I think other people around him also wanted to know because heads turned, a la those "My broker is E.F. Hutton and E.F. Hutton says..." commercials from my childhood (yes, I am old)...anyway, heads craned in our direction, as TH, snapping his fingers again, said, "I'm being a blue crab. I'm catching fish."

I suppose to some swimmers, having a child approach you, muttering to himself and snapping his hands in the air might be somewhat alarming. But this is Austin, and this was Barton Springs Pool. You have to experience it to understand it, but when you juxtapose Crab Boy against the the abdominally overflowing bikinis, the skipping, grinning, tattooed seniors, the hippies helping strangers' children in distress, the guitar player doing some pretty good covers, and the overall mood of eclecticos, one hand-snapping, self-talking crocodile/Crab Boy simply doesn't make that much of a splash.

Sometimes, I do still love Austin.