Oh, By the Way...

...and a propos of absolutely nothing, I wonder if Emily Bronte had Asperger's?

According to the Google search I just conducted, others have wondered the same thing.

It's the kind of thing you've gotta consider if you know anything about EB's story. She left behind almost no written record of her short life -- no letters, no diaries -- beyond Wuthering Heights and some juvenilia I believe exists but have only read about second-hand. Luckily, Charlotte loved her and wrote about her -- often a bit disingenuously, but that is what an older sister does when she wants the world to remember her younger sibling as more angel than oddball -- or even worse, social deviant. Because Emily Bronte was no Victorian "Angel in The House," that much I know is true.

I mean, have you READ Wuthering Heights? Heathcliff is no romantic hero, whatever the back of your Signet Classic says, and Cathy is as cruel and dangerous as her soul-mate.

 

Ugh. Shades of Scarlet and Rhett?

 

 

Oh, geez. Really??

The first time I read WH I was a teenager, and all I could do was hug my knees and wonder how so young a woman could have imagined and written down such heartbreaking acts of violence and cruelty. This was the stuff of nightmares, not of love.

None of this answers the Aspie question, but all of it is interesting, as far as I'm concerned.

And that, Readers, is your non-sequitur for tonight.

Once again, The Striped Nickel delivers. FTW!!

I'm Feeling Good.

I'm feeling good today. Because of me (with a little help from Lars and our friend Dave) a bunch of kids in need of friends have a place (virtual and actual) to come together and forge new friendships.

It all started with a listserv for parents of kids with Asperger's Syndrome. Someone posted a question about the computer game Minecraft. Did anyone else's kid play it?

It turned out A LOT of people had kids who played it. And were obsessed with it.

They included my kid.

So we all started talking, via this listserv. And people started saying, "I wish our kids could connect."

So I said, "Hey, let's start a Minecraft Club." And I proceeded to do just that.

With a great deal of effort from Lars and Dave, we set up a private server, just for these Aspie kids. We needed it to be private because it has to be safe for them. Now they can play the game (which is a totally non-violent, constructive game) together. They can connect with each other over this shared interest obsession.

Maybe the best part, though, is that once a month, in various parts of the state, we will meet in person. I'm hosting the first meeting, and I can't wait. It'll be wonderful.

One unexpected perk from all this is that a mom who lives in a town nearby contacted me to ask if Ben might be interested in hanging out with her son in advance of our club meeting. We jumped at the chance, and yesterday Ben and this other boy became friends, bonding over the computer, their mutual love of animals, and probably a sense that each of them is different from the mainstream and under-appreciated.  I tell Benjy all the time that someday people his own age will appreciate the wonderful qualities he brings to the world. This other boy has wonderful qualities too -- he's a great kid -- and I hope they will continue to appreciate each other.

So all together this is a good day. It's true I couldn't get Benjy to go his fencing class, but he did connect in a nice way with another boy on our private Minecraft server (aptly named by Ben "The Fun Bucket").

And that, Readers, is something to celebrate.

Aspie Videos

This one is sad but inspirational -- don't worry, it has a happy ending:

And this one is just plain touching:

This world would be a lot less interesting without Aspies in it!

Unmentionables

You'd think a mother would not have to issue reminders to change underwear daily. Right? Every morning I take out fresh boxers for Benjy, and every night I notice those boxers lying, crisp and untouched, on his chair. (I'm a bit slow on the uptake. But I'm close, Readers. I'm on the verge of remembering to WATCH HIM CHANGE HIS UNDERWEAR EVERY MORNING.)

Aspergian kids have this way of screwing up the dressing process, I've noticed. We have friends with an older Aspie son, a teenager, who can't get his pants on the right way: he zips them in the back. And Ben, as I've mentioned before, can't figure out the whole shirt business -- his are usually backwards and inside out. But this changing of the underwear -- or lack thereof -- is really bothering me. I keep hoping he'll notice girls and suddenly develop an interest in hygiene. That's what happened for Saskia: as soon as the male of the species became interesting she started taking forty-minute showers at least once a day. Sometimes twice. (This insanity is beyond Lars. He finds it confusing and possibly unethical for anyone to take a forty-minute shower.)

Now, socks are another matter. I myself have been known to constantly wear holey socks. I think this is an idiosyncrasy of the baby boomers. I know lots of other people my age or thereabouts who wear holey socks. My parents, on the other hand, would not be caught dead wearing them. And my grandparents? Good heavens, no!

Once I was visiting my adorable German-Jewish grandma in NYC. My ex-husband (yes, I have one of those) was with me, and he had brought holey socks with him. By some freak, mine were NOT holey. Anyway, Ex was in the shower, and Grams noticed his socks lying on the bed.

She picked one up, scrutinized it, and said, "Vhat is dat?"

"That," I replied, "is a sock."

"It's got a hole."

"I noticed."

"I vill darn it."

I almost fell off the edge of the bed. "DARN it? Really?"

"Of course." And she proceeded to locate her DARNING EGG and a needle, and to sew up them holes. This was the best entertainment I'd had all month.

Ex came out of the bathroom to get dressed. When he noticed his socks he froze. Picked one up and examined it.

"What," he said, "is this?" He dangled it in the air. In the spots where the holes had been was a sort of elegant scar tissue. Neither of us had ever seen anything like it.

"This is your sock. Darned." Then we both cracked up.

"Then I guess I can't just trash it," he said.

"You'll be wearing that baby for months to come," I assured him.

I so wish my darling Grams were still here to darn my socks, or to make Benjy change his underwear. (I can just hear her: "Vhat? You didn't change dose AGAIN? Put on de clean ones!") But sadly she died a few years ago, after a life most people would consider extremely challenging (yet full of intense love) at the age of 102. In her last couple of years of life Ben sat with her, unfazed by her extreme old age, and held her hand. Just sat quietly and held on for dear life.

Those are the moments I hang onto. Clean underwear be darned.

Love and Asperger's Syndrome

There was an article in yesterday's New York Times about love and autism. You can read it here.

This article got me thinking: What does Benjy's future hold, in terms of love and relationships? The young lovers profiled in the article, who are college-age kids, are at once interlocking gears, running interdependently and in sync, and completely dysfunctional. They have similar quirks and a measure of understanding for each other, yet neither can fully give the other what s/he wants.

For example, Kirsten wants physical affection but Jack can't give it to her (remember Temple Grandin's hug machine? I posted a pic in an earlier blog) -- and neither of them can really talk about it. So there are tears and hard feelings, and maybe some feelings of being lost and alone. But ultimately they want to be together. He discourses about chemistry and she actually listens. They are about as close to a match made in heaven as two people on the spectrum can be.

I hope against hope that Ben will find that someone who really listens when he dissertates about his subject du jour. He deserves to find that person, and she (or he?? who knows?) deserves to find Ben.

I am not always that listening person. I am often guilty of tuning out, nodding and saying, uh huh, but not really HEARING him.

When we had some setbacks recently, and Benjy was up half of one night, I failed to be a listener. He told me he thought a bath would help him regulate. It was 3 a.m. and I groaned inwardly: were we headed back to the all-night bath fests, with him fretting away in the tub and me dozing on the closed toilet -- five times, six times, until neither of us could take it any more and sleep claimed us? But I drew him a bath.

He settled into the tub and glanced at my face.

"About the allosaurus," he began, preparing to launch into a discourse on the Jurassic -- or Triassic, or Eocene -- period (I have forgotten which, and Ben is not nearby to set me right) but I put out my hand in a talk-to-the-hand gesture and said, "Stop."

"Benjy," I said, "I can't talk about dinosaurs right now. I have to just sit quietly and close my eyes."

His face fell, but he said, "It's okay. I know you're tired. You can  go to bed now, Mom."

I didn't want to leave him there, but I was going to slip off the toilet if I wasn't careful. So reluctantly I got up and went to bed.

Lars woke up when I pulled the comforter over me. "How is he?"

"I don't know. Can a person fall asleep in the tub and drown?"

"Why did you leave him like that?"

"I'm always the one who gets up. Why don't YOU stay with him?"

"I have to get up so early..."

I lay there, tense, worrying that my boy might drown but too tired to get up. After a while Lars heaved himself out of bed, and when he came back five minutes later, he told me Benjy had gone to his own bed, and was asleep.

I know I don't win this year's Mother of the Year Award. Because this year, like every other year so far, there've been times it's been too much for me, and I have been defeated.

So let's hope there's a soul mate out there who's going to listen when Benjy can't sleep, who's going to sit up with him and maybe bring him a glass of wine and settle in to learn something interesting about the allosaurus.

C.O.D. Piece

No, not these.The COD I'm talking about is a lot less... uh...interesting, and a lot less tasty. It's Call of Duty, naturally.

Now, you're probably thinking, the mother of an 11 year old should not even have Call of Duty on her radar screen. And you would be right, should not being the operative words. However, a lot of us do.

This is not because we like C.O.D., or want our children playing it. (And for the record, Benjy does not play it -- now.) But you're fighting a losing battle when you've got a kid who loves video games (and how many Aspies do not love video games?) and most of his classmates are playing games like C.O.D. Add to the soup a large dollop of loneliness and the longing to be accepted, and you've got your recipe for underage carnage.

What Ben said to me when he was in fifth grade, was: No one will talk to me, I have no friends. I'm so different than everyone else. If you'd let me play Call of Duty, at least they'd talk to me, and I'd know how to talk to them.

Well. What does a mother say to that? Was it manipulation? Maybe, a bit. But I checked with the school guidance counselor.

"Are they REALLY playing COD?" I asked indredulously.

"Oh, yeah. Benjy's not making it up."

Okay, then. I took a deep breath and I bought him Call of Duty. I hated myself for it. I hated that he was going to spend his time blowing people to smithereens (virtually, of course). And yet, I hated his loneliness even more, I hated that those kids looked right through him, when they weren't actively mean to him. It killed me that he was always alone.

Was I proud of myself? No. But I simply did not see a better solution. As it turned out, all he gained from the C.O.D experience was a great deal of anguish (those men and boys on COD are as cruel as they come). No friends, except the people he considered his "friends" -- the ones who weren't quite so cruel -- and who were probably forty-year-old men holed up in their parents' basements.

So the laptop Benjy was using for gaming came down with a mysterious ailment and had to go to the computer hospital. This caused untold tears and anguish. But it also eased his anxiety, his agitation, to be released from that toxic world.

I think what helps me to stay strong now, and resist the C.O.D. appeals, is that playing it did not improve Ben's social life. All it did was to drag him down. And yet, I don't blame myself for once saying yes. His isolation and loneliness were a terrible burden to him, and heartbreaking to Lars, Saskia, and me. It was worth a try. I would try anything, once.

The good news is, Benjy is happier than I have seen him in years. I attribute it to the Joy School. Finding the right place for Ben was the best thing we have ever done.

Does your boy (or girl) play C.O.D.? Tell me what your experience has been like!

Aspergian Rhapsody

There are so many things to love about Benjy that are Aspergian things. Like the way he owns every piece of information about surprising things. Ant wars in Texas, for instance. Or the reason why sloths are slothful (their diet, of course!), and where they live and what lazy-making things they eat. Or all the language that is used to describe what we do with and for computers. And how to solve problems of most sorts (except the mathematical kind). Encounters with Ben are generally  enlightening affairs.

But some encounters with Benjy are not. The rodent impersonation, for example, does not educate or inspire admiration, although it is good for a few chuckles. I used to think I needed to divert such antics, that other kids would take one look at him and think: loser! I used to assume I needed to warn him, "Only do that at home, or with people you trust." But he is smarter than I thought. He never, as far as I know, does the rodent imitation at school or in an unsafe place. And now I think differently about his quirky things. So what if he squeaks and chatters like a mouse, hands curled mouse-like under his chin, and some kid thinks he's weird? Or some perfectly-coiffed mom gives me a Look? I care if he cares, but if he doesn't, then let him be himself, "normalcy" be damned.There is something charming about that chattering mouse, and something absolutely endearing about the boy who channels him.

When Ben was in the hospital, I heard from one of the staff how he announced in group therapy that he has Asperger's Syndrome. The other boys expressed polite surprise. "Really, you do? I would never have known that."

To which Benjy replied, "Of course. Why do you think I'm so weird?"

"Weird" is not a word we have ever used to describe Benjy or any other person with Asperger's. (Although I will confess to calling Lars weird at times, especially in reference to odd things he eats. Lars can take it.) I laughed when I heard he'd said this, because I did not know what else to do. What I felt, though, was dismay. How sad that remark was!

I felt better when the staff member finished her story. What Benjy said next was this: "Yeah, I have Asperger's, and I'm a little weird, but the smartest people in the world have Asperger's, too. They're all scientists and programmers and stuff like that. Bill Gates has Asperger's."

I hope they were all impressed. I know I was. (Although I don't know if Bill Gates really has Asperger's. I would like to think that he does.)

Lars and Saskia and I have come to cherish the things about Benjy that other people might see as "off." The monologues you think will never end, but then, after eight minutes, they do. The way he emerges from his room in the morning with his shirt on backwards and inside out -- yes, he is halfway to twelve, and no, he doesn't care. These things make me smile.

Ben is so damned lovely, backwards and inside out. I like him that way. Because that's how I know who he is.