Wednesday, November 30, 2011

No Man Is An Island

This video took my breath away:

I find myself wondering whether all those brave souls camping out and facing pepper spray and arrest are just spinning their wheels, or whether real change is going to take place. I'm afraid of what will happen to us, and most of all to Benjy, if a fear of government leads to severely reduced state and federal services for the disabled. I'm afraid for a lot of other people, people who deserve to have their basic needs met and to live with dignity, if Medicaid gets slashed. And I'm afraid for the elderly, people like my parents, if Medicare and Social Security go away. Why is it that some people think it's each man for himself? As John Donne said, No man is an island. We NEED each other. And each of us got to where we are, even the wealthy few, because of sacrifices and contributions made by others.

Lars and I thank our lucky stars each time we fill Benjy's many prescriptions and do not have a co-payment, thanks to Mass Health. When his weekly therapy sessions do not cost us a dime. We are utterly grateful that tuition for the Joy School is paid by our school district. Without these supports we would be sunk, and Ben might not be alive.

I celebrate the protesters every day. I tell my kids about them. I long to join them, but with Ben's needs and work commitments it's hard to get down there. These are people who know what they believe in, and are willing to stand by their convictions. I love the humanity of those convictions.

Here's Donne's poem:

No man is an island entire of itself; every man
is a piece of the continent, a part of the main;
if a clod be washed away by the sea, Europe
is the less, as well as if a promontory were, as
well as a manor of thy friends or of thine
own were; any man's death diminishes me,
because I am involved in mankind.
And therefore never send to know for whom
the bell tolls; it tolls for thee.

Tuesday, November 29, 2011

Ben the Runner

Benjy is an odd mix of self-confident and self-despising (more often the latter). Today when I picked him up from the Joy School he piled into the car, glowing, and said,"I ran a lap around the courtyard in TWENTY SECONDS!!"

"Wow," I said. "That's good."

"Yeah," he said. "I'm a good runner. I think I can run about 15 miles per hour. Is that really fast?"

I had no idea, but I told him it was.

He continued, "I run with these tiny steps, like Sonic, and I'm about as fast as him, too. My legs are a blur."

Sonic is a video game character. I presume he is a fast runner.

When Benjy has an inflated sense of his own abilities I usually go with it -- not because I want to raise a kid who is "the best" at everything (a lot of parents seem to subscribe to this parenting philosophy) but because it makes me happy to see him feeling good about himself. His more frequent attitude is, I'm the worst, I'm worthless, don't waste your time with me.

But recently we've been seeing this other Ben. This excessively confident child. And what we haven't seen much of are the self-inflicted injuries that accompany his dysregulation, his tilt. When his body is tight with anxiety, and his mind, too; when he is suffused with sadness and self-loathing, his body exists only to be battered and insulted. Even my caresses do not drive off his injurious impulses.

Bit it's been weeks since I've seen any of that, except for one compulsive hurt -- biting his lower lip bloody. Otherwise it's been peaceful around here, and his body has been healing. The last hair-raising episode I can remember was when he was in the hospital, back in October, and taped a sheet of paper with a bulls-eye and the words "Shoot Here" to his forehead. That was not a good day for Lars and me. It was definitely not a good day for Ben.

Here at Chez Delaunay we take things one day at a time -- it's a little less stressful, and less devastating, that way -- and this day has been a great one. It's Saskia's 14th birthday, Benjy is a Runner, and I am sitting nearby them, listening to them enjoy each other's company. It was only a month ago that we were in as bad a place as I could have imagined (okay, maybe not quite as bad -- I frequently imagine worse). And now,  things are so much better I could cry.

Monday, November 28, 2011

Ballet Slippers (Or, Asking for What You Want)

Saskia is in her middle school musical, and we are wrapping our minds around the politics of it all. I remember from my high school years that the people who get the leads in the school musical are -- invariably -- the uber popular kids. And the director of Saskia's play has proven the truism. Now, I'm not an unbiased party when I tell you that Saskia is a deeply talented singer and actress, but a lot of the other people who will tell you that are. And she does have a named part, with a few lines of dialogue and a few lines of vocal solos.

But she had paid her dues in sixth and seventh grade, with ensemble and small roles, and she really, really wanted something better. I was pretty sure it wasn't going to happen, and I was right. Who got all the juicy parts? Why, the middle school glitterati, of course. I've seen most of them in other plays. They're okay, not great. But they've got moxie. They feel entitled to the world, and they insist the world deliver. Usually, it does.

Quiet, thoughtful types like Saskia don't make demands on anyone (except maybe their parents). So, often they do not receive what they want -- simply because they don't feel entitled to it. And now she sits attentively at rehearsals, even when they are boring, and the queen bees talk and text and create little whirlwinds of drama around themselves rather than paying attention and taking the play they are dominating seriously. The girl who got the part Saskia wanted has not even shown up for rehearsals yet, two weeks after they started.  

OK, rant over. But this situation of Saskia's is making me think about if and how to teach my children to ask for what they want. The last thing I want is a couple of entitled kids -- Lars and I do not admire such creatures -- but I do want them to advocate for themselves, and sometimes -- just sometimes -- to get a little piece of the pie.

But just how do you do that? As a kid, I was not entitled, either. I remember once wanting something dreadfully, and not feeling justified in asking for it. Have you heard of the ballerina Patricia McBride? She was big in the seventies, and I used to watch her dance when the New York City Ballet came to the Saratoga Performing Arts Center for a month every summer. She was truly amazing: beautiful, graceful, an incredible, poised athlete -- everything I was not. But my parents had friends in the NYCB orchestra so I got to go backstage and meet her. What I wanted more than anything, apart from telling her I  thought she was perfect, was a pair of signed toe shoes. My sister Sue had gotten a pair the summer before, signed by a dancer I'd never heard of. They hung jauntily on her dresser mirror, and I was desperately jealous.

So there I was, backstage with Patrica McBride, mostly gazing at her and listening while our orchestra friends chatted with her, and Readers, I was that close to snagging a pair of toe shoes. I could see a barrel of discards (they are only worn for one performance) within touching distance. But I was not able, somehow, to tell her I wanted them. And after ten minutes or so, our violinist and cellist friends delivered me, empty handed, from the magical backstage to my parents waiting by the stage door.

I am trying to figure out why all of us in our little family have such a hard time feeling entitled to ask for what we want. We know we are good people, and deserving, but we just haven't got the moxie you need to stake a claim it in this social Darwinist world. Will someone else will always get the toe shoes, the lead, the high salary? I don't know, but my project for myself over winter break is to figure this out. I'll let you know when I've got an answer. 

Sunday, November 27, 2011

On siblings and names

So, late this morning we were sitting together eating brunch with Grandma and Grandpa, some beloved cousins, and my brother and sister-in-law, whom I've named Rick and Jackie for the purposes of anonymous blogging. And Rick and Jackie let me know they are Not Amused.

"Rick? Really??" said Rick, spearing some sort of vegan eatable with his fork. "I mean, Richard, maybe, or Rich. But NOT Rick."

"On that note," said Jackie, "although I love the blog, I wish you'd called me something other than Jackie. I really do not like it." She said this with a grimace that suggested a visceral aversion to the name. Jackie is so beautiful you could call her Bertha and somehow it would suit her. But "Jackie," apparently, does not.

I asked them to suggest something better. "Keep the J and the R," I told them, because those are their real initials. Rick shrugged. Jackie said, "Anything you like."

"How about 'Ralph,' pronounced the English way ('Rafe'), as in Ralph Feinnes or Ralph Vaughan Williams?"

"But people will think it's 'Ralph.'"


"Jackie," I said, passing her a bagel. "How about Jules?"

Jackie seemed non-committal. "Sure, if you want."

So in the interest of keeping the peace, my brother and sister-in-law will henceforth be referred to here as if they were characters in an 18th-century novel: R-- and J--.

Wednesday, November 23, 2011

What I'm Thankful For

It's Thanksgiving tomorrow, and I've been reflecting on the good things in my life. There are quite a few:

  • The blessing of family
  • Health
  • Amazing friends
  • The various communities of which we are a part

  • The time and ability to write
  • A little house we love
  • A Very Fluffy Dog
  • Four Rockin' Hermit Crabs
  • A school district that does the right thing
  • Victorian novels
  • Bach, Haydn, Mozart, Beethoven, and Schubert
  • The Beatles
  • Autumn in New England 
  • Boston, baby!
 I  know there's more. God knows there's been loss as well. And things that are hard.

But right now I'm thinking of Benjy's face, flushed and happy, when I picked him up last night from the fencing class he recently started, and the way he connected with several of the boys there, and the bad things just slip away.

This is going to be a great Thanksgiving, I just know it.

So, what are you thankful for, Readers? Oh, and happy holiday!

Tuesday, November 22, 2011

An Eye-Opening Experience

So, early this morning, around three-thirty, I was awakened by a localized, dull pain in my right calf. It was a dime-sized ache, and I thought: Could this be a blood clot? Because I take a medication, on a nightly basis, that can cause the blood to thicken. I lay in bed for an agonized ten minutes, and then I woke Lars and asked him to pass me a couple of baby aspirin from his bedside table. He sleepily obliged.

After about half an hour the dime-sized ache disappeared -- or else it traveled, because all of a sudden I felt a dull ache, not insignificant, on the right side of my upper back. Could the clot have migrated to my lung?

Now I was really scared. But I did not want Lars to think me babyish, or hypochondriacal, so I said nothing, just lay there frozen with fear, watching the clock. When it told me another twenty minutes had passed, the pain in my back had radiated to my chest. I got up, walked around, took a drink of water. And my chest began to burn. I woke Lars and told him I thought I was having a heart attack. My heart fluttered painfully, wildly, in my chest. Lars stumbled out of bed and gazed at me uncomprehendingly.

Call 911, I said. He looked around for his jeans. I called instead. While we waited for the ambulance I sat on our butterscotch-colored couch and thought about my children. I thought I was possibly going to die, and they would never have the chance to say goodbye to me. Benjy, at least. Because the last thing I was going to do was wake him to see me like this, see the fire engine and ambulance and police car that were about to pull up to our house. Lars did wake Saskia, to tell her we were going to the hospital, so they wouldn't wake a few hours later to an empty house and think we'd up and left.

In the ambulance they sprayed that anti-heart attack stuff under my tongue and did an EKG. And all I could think about was my children, and what they would do without me.

Now, you've already guessed that this story has a happy ending, because here I am, writing this post. After ten hours in the emergency room and a battery of tests, I was diagnosed with reflux. Yeah, reflux. And I was kind of embarrassed, but also relieved. So once again, the question of What Will Benjy Do When We Are Gone was deferred. Until when? I really don't know. It's a question that pains us, so we don't try to answer it as much as we should.

About five years ago we visited a lawyer, for help in figuring this out. And she set up a special needs trust for Ben. But the problem is, we've never had any money with which to populate it. So it sits there, somewhere, unfulfilled, and we do not know what to do with it. In the meantime, Lars and I emerge into the flush of middle age, grow closer, by at least a little, to death, and there is no solution to this dilemma. Maybe he'll manage just fine without us. Maybe Saskia will step in. I bet she will. But that's only if they're grown up. If we die tomorrow, then what? There's Grandma and Grandpa, there's my brother Rick and his wife Jackie. They would all step in, I know.

But the question remains: What would Benjy do without us? My ninety minutes at death's door early this morning has made that question all too real. Now we have to get back to finding an answer.

Friday, November 18, 2011


Today jealousy reared its ugly head, and this made me sad.

A boy in Benjy's class who has been away on vacation returned, and it turns out he was at Disney World. We have never been able to take Benjy and Saskia to Disney World, although they have had many February breaks with Grandma and Grandpa in Arizona, courtesy of G & G's frequent flyer miles. And this is something of a sore point with Ben. As long as he can remember he has wanted to go to Disney World.

So, this boy came back and talked about his lovely vacation. Then he told Ben he goes to Disney World twice a year. And then he told him he's traveled extensively across America, and has many wonderful travels to look forward to.

This made Benjy jealous and upset. So much so that he did not have a good day today.

It's hard for any parents to acknowledge that they can't give their children the things they want most. And the argument about a roof over your head, and enough food, and heat in the winter, and a family who loves you rarely pulls any weight with kids, I've noticed.

For us, this Disney-deficit is really painful. Knowing our luck, by the time we finally have a spare few thousand and can do it, our kids will be grown up. Maybe we can use the money to finance a trip to wherever college kids go on spring break these days. (This is optimistically assuming Ben will go to college, and if he does, that anyone will want to celebrate spring break with him.)

I tried to make him feel better. "You've been in Europe. I bet Billy hasn't traveled in Europe."

To which he replied caustically, "I was a BABY, mom."

That's true, he was, and the trip was to visit Lars's family. It was to be our last family trip to Europe, the last time we could afford four plane tickets. What else could I say? I considered saying, "I'm sorry," but stopped myself just in time. Apologizing for our financial insufficiency is not a precedent I wish to set.

So I did the only thing I could. Stopped at Shaw's and bought him a box of four lovely cinnamon buns. And you know what? It worked. He ate, he sang a song he despises but likes to sing anyway. He cut a few capers. And now he is contendedly occupying himself upstairs.

Mom: 1                          Green-Eyed Monster: 0

Thursday, November 17, 2011

"The Fringe Benefits of Failure"

This is a post unrelated to any of my usual stuff.

I was browsing videos and came across this 2008 Harvard commencement speech by J.K. Rowling. Now, I read some of the Harry Potter books with Ben and was not blown away. But I was stunned by this commencement speech. Stunned. It's beautiful. And funny. And inspiring. (And so is she, all of the above.)

This clip is only the first ten minutes. If you like it and want to hear more, go to and search for it. It's magic.

Wednesday, November 16, 2011

What To Expect When You Don't Get the Kid You Expected

Funny title, no? Credit goes to my literary agent, Janet Reid, for that one. Sure, it's flippant, but boy does it hit close to home. Because nobody expects life will be an awful ordeal for their child . No one anticipates seasons of struggle and despair. I doubt there's a parent out there who reckons on a trajectory toward death, rather than adulthood. And it's not only parents of kids with autism, or depression -- or both -- who are forced to learn a new normal. Parents whose children develop cancer, or become paralyzed, have to do it too.

It's all about milestones missed, birthday parties that pass her by, friendless weekends. A kid who can't make it in school, who will never go to college, who will inadvertently break some law because he does not understand the rules. No one expects these things, but some of us receive them anyway.

But I want to keep things light. So here's a list of What to Expect that might make you smile (these tend to be autism spectrum peculiarities; feel free to substitute your own):

1. Clothes on the floor, on the couch, anywhere but on the body (you're lucky if diaper/undies remain on).
2. The dialogue from entire television episodes memorized and recited to you at dinnertime.
3. Endless repetitions of the same sentence. Then more.
4. No socks on feet, even in deepest, darkest winter.
5. Hood worn any time a jacket is donned, in any weather, indoors or out.
6. Disinterest in putting shirts and pants on frontwards and right side out.
7. Longstanding inability to tie shoes.
8. Indescribable joy at having just the kid you never realized you'd hoped for. 

Disability and Work

In an earlier post I talked about the price of disability, and a fair number of readers chimed in with their stories of financial stress due to caring for a disabled loved one. There is no question that families of the disabled take a HUGE financial hit. We are a good example of that: although I have worked since 2005, when Benjy was 5 years old, I have never been able to have a "real" career. I've worked as an adjunct professor at various colleges, earning very little but having the flexibility I've needed to be Benjy's mom. And I've been grateful for the flexibility, if not for having a PhD and earning less than my undergrads will earn when they leave college with their Bachelor's degrees.

But have I done a good job? At times, yes. Other times, decidedly not. When you are not sure you can keep your child alive, or even just happy, on a daily basis, that impacts your work. When you are worried about him being bullied or her being stressed at school, when you know he's going to come home with tattered fingers or a swollen lip -- his own way of dealing with the awfulness of his days -- you simply cannot focus.

I'm thinking of this now, because the one class I am scheduled to teach in the spring has not filled up. Not even close. And I have to wonder why. Is it the ungodly hour? (It's a very early class.) Could be. Is it me? Could be. Whatever the reason that students are not flocking to take my class -- and this is the first time in six years that they haven't, probably because last semester and this have not been successful ones for me -- I am likely to have no work after December. And that is at once a wonderful and a terrible thought.

The wonderful thought is that I would not be stretched in too many directions. I would not be worrying about Ben's safety, his emotional state, and what would happen when I got him home, while trying to teach. I would not be interrupted, constantly, while trying to grade papers or prepare for class. And I could devote myself entirely to being there for him and Saskia. No more partial attention. No more distraction at work and at home.

The terrible thought is, as little as I bring home each month, it's all earmarked for something. Imagining a one-salary life for our family, even if salary # 2 has been so negligible, is a scary thing.

But: I guess I can see it as an adventure. Can we do it? As a matter of fact, I think we can. I don't know for sure it's going to happen, this loss of income. But I do know that, if it does, it will be a HUGE relief. Even if it throws the earth off its axis for a little while.

Readers, have any of you struggled at work due to family issues? Have you succeeded? Failed? And how did you feel about it? Let me know!

Tuesday, November 15, 2011

Benjy, and That Which is Odd

One of the things Benjy is learning at the Joy School, is how to understand his classmates. Because everyone at his school is working on something, and some of these things can seem -- well, a bit odd. Now, Ben himself would be the first to admit that he is, at times, odd. I've mentioned the crackerjack rodent imitation in an earlier post. There's also the Clown Laugh (he's a dead ringer for Bozo), and the Dissertations on Various Arcane Topics, delivered without pausing for breath. So, odd is something we're comfortable with here at Chez Delaunay.

And yet. For the first time in his life Ben is feeling fairly "normal," by contrast. ("Normal" is not a word we like to use around here -- do we even know any normal folks? We might, but they are not people we hang with. Even so, as a concept, "normalcy" is sometimes useful.)

Benjy is trying to wrap his mind around the child whose only conversation is about the calendar, who discourses exclusively about dates and spans of time, seasons and anniversaries. What is today's number, and what is tomorrow's. And he simply does not get it. Of course, his own obsessive monologues about  idiosyncratic interests merely occupy a different space on the same continuum. For some kids, listening to Ben pontificate about the skeletal articulation of the spinosaurus for eighteen minutes and forty-two seconds is probably as odd as the calendar boy's rhapsodizing over dates seems to Ben.

But he will not have noticed that connection, and I'll be the last one to point it out. He's basking in his new-found sense of normal. Let's let him enjoy it.

This will make you cry

An ex-student of mine sent me this link today. It's about an unlikely hero:

Watch it with a box of tissues nearby. What this does make me wonder, though, is whether an entire school's-worth of kids --including the popular ones -- would scream and leap to their feet for a child who is less obviously "autistic" than this wonderful boy, but still different from the mainstream. I guess I'm thinking of Ben, here. It's hard to imagine two hundred typical kids treating him like a hero, no matter what his achievement.

Still, this is a Very Good Thing. Not to be corny, but stories like this renew my faith in humanity.

Sunday, November 13, 2011


** I had some formatting issues with this post -- sorry!**

Sometimes, when Benjy is more dysregulated than usual, I have a hard time helping him. When he is at the apex of despair, or disabled by anxiety, or just off-kilter. Then I have to ask for help. More often than not, Lars is at work, and the person I lean on is Saskia. 

Now, Saskia is far from perfect. She is, after all, a teenage girl -- need I say more? But she is a tremendous support to Benjy, and to me, when we really need her. We are lucky to have her in our lives.
I mentioned in an earlier post that I am doing some writing (beyond this blogging) about raising a child who wants to die. Here is what I have to say about Ben and Saksia in my personal essay, "Benjy, Awake": 

Saskia, who shares none of Benjy’s challenges, is a sibling to Major Depressive Disorder, Generalized Anxiety Disorder, Panic Disorder with Agoraphobia, Claustrophobia, ADHD, and Obsessive Compulsive Disorder, as well as Autism. (For a while after a blow-out on the Mass Pike she was also a sister to PTSD.). Her normalcy is sometimes the only thing that keeps us from sinking under the weight of this business. How many times has she held us all aloft, firmly above the flood waters? And sometimes I think she must hate the lot of us. I would, if I were a thirteen-year-old girl caught in the maelstrom of this family’s dramas. 

Saskia is never (okay, rarely) too busy to step in and hold Ben, read to him, play video games with him when he is too sad to function and I cannot pull him out of his sorrow. This morning, for example, he was needy. He had a get-together planned with a friend -- a rare occurrence! -- at 1, but it was only 10, and he was feeling empty. I was trying to grade papers, Saskia was watching TV with a friend who had spent the night. Lars was readying himself to go to work even though it's Sunday (it's crunch time at Software Central). And Benjy wanted to play Frisbee.

Lars played with him for fifteen minutes, then left for work. Ben crept back inside and curled up on the couch -- I glanced up and saw him lying there, before returning to my papers. Then I heard something. It was the sound of weeping. Ben was crying. He was hollow inside, and he was lonely, and he was sad.

I closed my laptop. "I'll just put on some clothes," I told him, "and we'll go play Frisbee." I was reluctant to ask Saskia to step in because she was with a friend, and she should be able to just be a 13-year-old girl sometimes, without the added burden of caring for her disabled brother.

But Saskia stepped in anyway. By the time I finished dressing she and her friend were outside with Ben. She was not put out. She was not resentful. She knows there is a kind of magic about her, that she embodies the antidote to Ben's depression. Not always, but often enough.

So that's Saskia. What would we do without her? I plan never to find out. I do worry that she's not having the carefree childhood I would wish for her, but I know that when we need her, she'll be there. <3


Friday, November 11, 2011


I've never met a child for whom boredom is such a catastrophe as it is for Benjy. It carves a deep, aching hole out of his core. (Gruesome, I know. And yet, appropriate.)

Boredom means, I have nothing in my life.

Boredom means, I have no friends.

Boredom means, Life is not worthwhile.

According to Benjy's psychiatrist, Dr. D--, what boredom actually means is, I am depressed. If boredom were simply boredom, then the many things that Ben could do -- origami, X-Box or Wii, reading, drawing, jumping on his trampoline (lucky guy!), playing Frisbee, watching the sometimes captivating YouTube videos about animals, and so on -- would be enough. But these things do not begin to fill him. When I trot out the list he grows agitated. He paces. Wrings his hands. And buries his face in the sofa pillows. Sometimes he goes to bed and draws his comforter over his head.

"I'm going to sleep," he announces, "and I hope I don't wake up!" But sleep rarely obliges. Boredom invades even his bed, and after five minutes he is pacing again. Anguished. Lonely.

I have not yet figured out this knotty problem. Maybe you, Readers, can tell me what to do about this boredom. All I know is that Benjy's boredom, or depression, or whatever you want to call it, is usually followed by a period, however brief, of gladness. And when my boy is glad, so am I.

Thursday, November 10, 2011

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!

Tuesday, November 8, 2011

No. More. Lecturing.

A faithful reader (hi, Mom!) has informed me that my last post was more suited to a classroom lecture than a blog. Mea culpa! I shall return to posting interesting/funny/heartbreaking (hopefully not a lot of these) anecdotes about The Boy. My next post will be entitled "C.O.D. Pieces." Aren't you intrigued? If you don't know what a codpiece is, go look it up. And then tell youself that I will probably NOT be blogging about those. Stay tuned...



Monday, November 7, 2011

Learning the Grammar of Unity

I recently taught a wonderful essay, called "Learning the Grammar of Animacy," in my freshman writing class. It's by a woman named Robin Wall Kimmerer, and she's native American -- Potawatomi -- and a botanist, who specializes in mosses. She also happens to be a lovely writer.

Kimmerer's essay is largely about her study of the nearly-extinct Potawatomi language, and the lessons she derives from it. The thing about this language is, it doesn't divide the world into he, she, and it in the same way that English does. It doesn't assume that human beings are the only animals -- or natural entities -- deserving of subjectivity (being a he or she instead of an it). In Potawatomi, a bay is gendered. So is a tree. And so is a rock. These are things of nature, and they are infused with a life-spirit. They are animate things, and they are subjects rather than objects.

When bays and trees  and rocks, when cats and roosters and earthworms, are perceived as subjects, they are treated as though they have intrinsic value. They are respected. When your language is structured such that most things except for human-made objects (tables, lamps) are animate. you live life in a certain, all-embracing way. What a great way to live!

Most languages are structured in a more binary way than Potawatomi. By binary way, I mean that they are governed by oppositions. The most basic opposition, one shared by the Potawatomi, is probably he/she.  But we also have s/he and it (and there are far more "its" in English than in Potawatomi). There is also day/night (not a human construct) and rich/poor (definitely a man-made construct). The most destructive binary, in my opinion -- and perhaps the most "natural" of them all -- is I and you. Us and them. The rich and the poor. The blacks and the whites. Christians and Jews. Jews and Muslims. "Normal" and "abnormal." We divide our world up into these binaries, and this allows certain groups to exercise power over other groups. It enables people like Benjy to look themselves over and conclude that they are inferior to the "norm" (whatever that is), because they don't resemble it. And the "norm," whether behavioral or aesthetic or sartorial or religious, is a tyrant.

Of course, nature is binary. I mentioned day and night. There's also hot and cold, sour and sweet, hard and soft. And there's life and death. When Benjy says, "I do not think my life is worth living. I want it to end," he is invoking the binary of life and death. Life is painful, and there is only one alternative to it. Either you are alive or you are dead.

Maybe we can't escape binary thinking. Our language, our world, are built that way. But Kimmerer, as she learns the Potawatomi language, is teaching her botany students a thing or two about the grammar of animacy. She's helping them to see the world in a new, and more humane way.

I would like to learn the grammar of animacy too, which is also a grammar of unity. I want to teach it to my chldren, my parents, my friends, my students. Who's with me?

Sunday, November 6, 2011

Autism and scientific intelligence

This article in the journal Nature does not surprise me:

I've seen it: incredible scientific intelligence in people on the autism spectrum. The author of this piece is spot on: it's time to begin acknowledging that there are different (typically "autistic??") ways of thinking, of learning. I think of these different -- but equal, and sometimes even superior -- ways of seeing, and being in, the world as the "Other Normal." Not as deficits, but as idiosyncratic strengths. It's a normal we live with here at Chez Delaunay. Sometimes it's strange. Occasionally it's funny. Always, it's astonishing.

What "Other Normal" is a part of your life?

Loving Lampposts -- and other illuminating things

I heard Todd Drezner speak at the Asperger's Association of New England conference last month. He had a lot to say about the tension between two autism camps: the neurodiversity crowd, and those who seek to cure their autistic loved ones, by whatever means available.

The neurodiversity folks, many of whom have autism themselves, say, "Accept me for who I am. I am different than you -- so what?" Autism, says one person featured in Drezner's compelling documentary, "Loving Lampposts," is a gift in disguise.

It's true that autism can be a gift. I celebrate the gift that is Benjy every day. And yet, for some families, autism is a catastrophe -- especially to those who have no or little support (from extended family, community, school, state and federal governments). It's easy to understand why they want so desperately to cure their loved ones of what feels to them a terrible affliction. Life for an autism family can be so very hard.

You can watch the trailer for "Loving Lampposts" here:"

I find it hard to decide where I stand on the issue of curing vs. celebrating autism. I can tell you that a person with high-functioning autism (or the parent of such a person) will have a different perspective on this question than someone whose loved one is more severely impacted. I don't want to "cure" Benjy of Asperger's. I love the way he is. But if I could make his life easier -- introduce more friendships into it, or eradicate his depression and anxiety -- I would do so at any cost. I just don't want to lose those things that make him the amazing and unique person he is.

Friday, November 4, 2011

How will you change the world?

Lars is at home today with a sore foot (hooray for sore feet!). Therefore, I am not grading papers.

What I am doing, is daydreaming about what I would do if:

1) I were super rich; and

2) I were omnipotent and could change things to how I like them.

First of all, let's get one thing straight. I would LOVE to be rich instead of broke. Love it. That would mean not worrying about money evaporating a week before the next infusion is due. It would mean more opportunities for our kids. And it would mean getting our grubby hands on that ocean-front house in Gloucester we've been fantasizing about for eons.

~~ocean-front house~~

But I think I'd rather be omnipotent than rich, given the choice. And here's how I would remake the world if I could:

1) I'd give people the ability to talk to each other civilly, and REALLY HEAR EACH OTHER.

2) I'd give people better manners.

3) Teach the art of walking in another person's shoes.

4) Remove money from its pedestal (okay, there goes that beach house).

5) Place ethics in that pedestal.

6) Remove the CRUELTY GENE from kids, especially middle schoolers!

7) Eradicate bullying from the face of the earth (including grownup forms of it, such as the sort financial institutions and CEOs engage in).

8) Make teaching and social work HIGHLY RESPECTED and WELL-COMPENSATED jobs.

9) Make professional athletics less highly respected and less well-compensated (sorry, folks).

10) Make this world a hospitable place for those who are different, a nurturing place for those in need, and a friendly place for all.

When you get your powers, how will you change the world? Comment, please!