Wednesday, December 28, 2011

Evolution of the Striped Nickel

Have you noticed that this blog is slowly evolving? I used to write primarily about parenting a child who wants to die. But a while after this blog was born, Benjy started the Joy School, and stopped wanting to end his life. He'd wanted to die, on and off, since the age of four. Had injured himself in small and not so small ways since third grade. We were living in a kind of desperate bubble for many, many years, moving from one crisis to the next.

But now we have been granted a breather. I don't know how long it will last. Don't know if our school district will willingly continue paying the pricey Joy School tuition (and if they won't what exactly we can do about it short of taking them to court, which we can't afford).

I actually DO think our district will allow him to continue where he is -- they are principled and compassionate people, focused on kids and not money.

So it looks like this blog will continue on its current course: a celebration of one quirky boy, his amazing teenage sister, and an excellent, slightly goofy husband (who is going to receive a new sweatshirt today in the hopes he will retire the holey one, which for some reason he enjoys wearing to work). And of course, on me, in my efforts to be a good mother and wife to them all.

The Striped Nickel is a blog about parenting an Aspie who is occasionally anxious and depressed, but who DOES NOT WANT TO DIE. At least, that's what it is for now.

If I've said it once, I've said it a zillion times: We take things one day at a time here at Chez Delaunay.

Delaunay Table Talk

It's great to sit around the dinner table and get an education in ickiness.  I mean, how many of us get to say, "Enough with the anal probes, can we talk about The Hunger Games?" while passing the brussels sprouts.

And how many of us get this in response: "The dicynodonts were the most successful group of plant-eating therapsids. Just saying."

Tuesday, December 27, 2011

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.

Sunday, December 25, 2011

Happy Happy

To those of you who celebrate Christmas:

Merry Christmas

Froeliche Weinacht

Joyeux Noel

Feliz Navidad

And of course, it's still Hanukkah, so...


Lars converted last year, so now we are an all-Hanukkah family. But we love all the winter-solstice holidays.

So, Happy Happy to everyone!

Thursday, December 22, 2011

A Story of Ten Fingers

Benjy is such a confounding boy. Just when you think you've got him figured out he goes and does something confusing.

Last night at dinner he was up. Talking up a storm. Hurling trivia questions at us. (I wish I could remember some of them; there were about twenty, in rapid-fire succession, and they were Doozies.) Laughing -- no, dissolving -- over some YouTube silliness involving an animated cat with a large nostril and bad teeth. Saskia laughed with him. so Lars and I joined in.

O, we were happy!

Fast forward to this morning. Benjy cannot, or does not want to, wake up. He is down, down. Just let me sleep, he murmurs. I can't do it. What "it" is, is not clear to me. I let him sleep, call the Joy School to let them know he'll be late.

At 8:30 I draw him a bath and wake him up. Groggily, he slips into the tub. I close the shower curtain so I can get myself ready at the sink and he can have privacy. When I peek in he is lying there, listless. He has not picked up the soap.

"Can you wash?" I ask. Lars always warns me against making things Benjy's choice. "You need to wash now," I correct myself.

Benjy nods but does not pick up the soap. After a minute he says, "why do you think I have these bruises on my legs?"

Bruises, Readers, are something we watch for here at Chez Delaunay, because in past times Benjy has hit himself -- with his fists and other objects -- and caused bruising.

My heart stops. I examine the bruises but they are not symmetrical. There is no method to them. There are only three of them. His legs look like the legs of an 11-year-old boy.

"Did you hit yourself, Ben?" I ask, trying to remain calm.


"You promise?"

"I do."

"Then it's okay," I tell him, but deep inside I am not sure.

When I return from walking the dog, Benjy is dressed and sitting with Lars at the dining room table. But his hands are still pruney from the bath. I glance at his fingers, and that's when I see it, the first time I've noticed in a couple of months. His ten finger tips are cratered. He's been tearing them up again.

I grab his hands and press them between mine. "Don't pick," I tell him, those two little words swelling with unspoken anguish.

There are days that radiate happiness and peace, and then there are the other days. We take things one day at a time around here, because to a family dealing with mental illness, a day is a lifetime.

Wednesday, December 21, 2011

Cue the sad violin

The title of this post is probably too flippant. I really did have a sad, violin-related experience last night.

It was an evening of school concerts. Ben did not want to go, but Saskia was singing in the treble choir and I wanted/needed to be there. Lars was busy making a profit for Software Central and would not be home until 11, so Benjy had to come with me.

We got there relatively early because I knew it would be standing room only (welcome to affluent suburbia). And as I should have expected but for some ridiculous reason did not, Ben tensed up as the auditorium filled with chattering humanoids. I tried to distract him with the book I made him bring along, and that worked for oh, about three minutes. Then he stood up and announced, "I am claustrophobic here and am going out to the lobby."

Of course he was claustrophobic. He always has been. And this place was a sensory nightmare. But there was something else bothering him, I'm pretty sure. The middle school string orchestra was on the stage warming up, and I think it pained him that he was not with them.

Now, Ben is a talented violinist. He just picked up the violin one day and knew how to play. It was weird and wonderful. After a lost year of group lessons at school in third grade (group lessons are NOT going to work for Ben) he had a couple of years of private lessons and zipped through his books. But the pressure he felt to perform, to do well, crippled him. He simply couldn't handle it. Same with the fifth grade orchestra he joined at school: he went three times and then his anxiety became so extreme he had to quit. So, he couldn't practice at home because his teacher had told us he was a talented, natural violinist. It was too heavy. And he couldn't play in the orchestra because of his sensory issues and that same heavy pressure.

Now he is not playing at all, and I keep looking at the violin wedged between our couch and stereo cabinet and thinking. "Why am I renting this?" But something keeps me from turning it in, because WHAT IF he wants to go back to playing Bach's Air on the G-String and there's no violin for him to do it on?

Anyway, whether it was the noise, the crush of people, or the sense of having failed himself and me (I HOPE I have not made him feel that way!), he did not stay for the orchestra performance. He came back for Saskia's choir -- were they ever wonderful! -- then left again for the band.

I felt mostly okay about his need to be absent -- bad for him, that it was such an ordeal, but I understood.

What was unbearably hard was facing the fact that he has this incredible talent and is unable to develop it due to his mental health issues.  Watching those string players up there -- they were good! -- and knowing that Benjy will probably never be among them. Will probably never go to music camp, and may never pick up the violin again. This last thought breaks my heart -- but ultimately this is not about me. And if it's not a terrible loss to Ben then it has to be okay.

But what if it is a loss to him? That is a possibility I will have to live with, and it won't be easy.

Creative Interludes

Sometimes Benjy, who is a veritable walking encyclopedia, announces something that smells fishy. Like this morning, over breakfast

Benjy: Did you know that dolphins are more intelligent than humans?

Me: Ahm, are you sure about that?

Benjy: I'm sure.

Me: How do you know?

Benjy: Scientists know. We just do."

Me: So, has a dolphin ever mastered the Pythagorean Theorem? Or built a cathedral?

Benjy: We-ell, no, but it's not that simple. They don't have thumbs.

Me: Oh. And if they did, they'd be doing higher math, right?

Benjy (indignant): Mom!

Me: So what makes dolphins smarter than us?

Benjy: They've been known to rescue drowning people.

Lars (from the bathroom, through the hum of his razor): They save pieces of driftwood, too.

Benjy, with a patient sigh: Dolphins have a blah blah blah swim bladder cerebral cortex blah blah dorsal fin. AND they give birth to live young.

Me: Okay, then.

Benjy: Can I have some more Frosted Flakes?

Tuesday, December 20, 2011

Looking for an Organization to Support this Holiday Season?

Would you like to make a difference to people who need your support? Consider a donation to:

The National Alliance on Mental Illness

The Asperger's Association of New England

Autism Speaks

Susan G. Komen for the Cure

Facing Our Risk of Cancer Empowered (FORCE)

I know you're not surprised to see the autism/Asperger's/mental health links. Want to know why I've got the breast cancer links up there? My older sister, whom I call Sue on this blog, died of breast cancer at the age of 36, and I am a previvor -- someone unfortunate enough to carry one of the gene mutations that inclines a person toward breast (and ovarian) cancer.

These are all excellent organizations that are making a difference in a lot of people's lives. Check them out if you have a chance. Thanks.

On iPods, Hanukkah, and Music

Tonight is the first night of Hanukkah, and I am trying to decide which gifts to give first. Let me say that I am extremely proud of my economical shopping this year. (Of course, I'll probably regret the MP3 player and binoculars with digital camera I bought Ben at CVS, each for under $30; they're bound not to work, or work for two days and then implode.) 

I had fun shopping for Saskia, especially since I found (and bought) something I used and loved when I was her age in 1977: Love's Fresh Lemon and Love's Baby Soft perfumes. (Did any of you, Readers, use these scents when you were teenagers?) When I saw them at CVS I almost screamed -- I'd been nostalgic for Love's Fresh Lemon for years. I'd even told Lars about it ("If ONLY they still made LFL -- I would wear it and you would love it. Or else"). Well, folks, they still make it. And need I tell you I bought both perfumes for Saskia, and the lemon one for myself? Yeah!

But what I've been thinking about this morning is music, and what Benjy might like on his MP3 player. When he's talked about it he's suggested he might like something relaxing and classical (Vivaldi, anyone?). I can advise him on the classical, since that's my kind of music, and Saskia can advise him on That Which is Cool.

I do have my own iPod, an iPod Touch that I'm considering giving to Saskia to replace her oh-so-uncool and dated Nano.

My iPod touch has guys on it who look like this:

And this:

And this:

Okay, you can stop laughing. Really, it's okay. You don't need to laugh. I KNOW I'm a loser.

Once Saskia gets her paws on the iPod, I assume it will be filled with 200 songs by Fallout Boy. I tried to post an image of Fallout Boy but my computer immediately shut down. I'm trying to figure out the significance of that.

So, what's on your iPod? Oh -- and Happy Hanukkah!

Anxiety or Illness?

It's a beautiful day today, clear and bright. But for Benjy this day contains some darkness.

He's not at school. When I woke him at seven he complained of a severe cough. And he is coughing quite a bit. But with Ben you never know whether a somatic complaint is actually a psychiatric one. So here I am, analyzing my boy, searching for clues. Is he hot? His forehead feels cool. Is he listless? A little, when I ask him to try to rouse himself and go to school.

The reason it's concerning to me is that we've had a few setbacks of late. Nothing extreme. I have not seen any shredded fingertips or bloodstained clothes. His lower lip is scabby and a little swollen but it has been, consistently, for the past six months. But there have been a  few nights and mornings when he's pleaded with me to let him stay home from school. And recently there was a sleepless night, complete with a 3 a.m. bath to relax him, that brought back uncomfortable memories. ( The worst of these memories is from a time that preceded his first hospitalization -- a weekend of sleeplessness and agitation, five or six useless baths throughout the long, dark nights, and Lars and I as despairing as Benjy himself).

So I wonder what's going on. Ben tells me he's opted out of two field trips recently, one to a bank and the other to a library. I have a theory about these opt-outs. I think he is anxious about the unpredictable behaviors of his classmates, and how those might play out in public. He has never dealt well with unpredictability or disruptiveness in other children -- these things stress him out. And right now there is a boy in his class who struggles with containing his emotions, is aggressive and volatile -- sometimes toward Ben. So today's somatic complaint may be a protest against the unpredictable and the disruptive at school. I just can't know for sure because that is not something Benjy would fess up to.

So here we are at home, and all I can do is keep him off the computer for as long as possible and tell him if he's too sick for school he's too sick for fencing tonight. And keep my fingers crossed we're not in for another storm.

Monday, December 19, 2011

It Only Takes a Girl

This is off topic but I had to share it. Well, okay, it's not really off topic, to the extent that this blog seeks to present a humane vision and so does the video.

Think about your daughters, granddaughters, nieces, great-granddaughters, when you watch it. And then, watch it with them.

Us and Versailles

I was just re-reading my last post and I realized that I might, with my trying-to-be-clever reference to Marie Antoinette and Louis XVI, have given the wrong impression. We've never lived like aristocrats. We simply, until a year or so ago, accumulated a lot of debt without thinking much about it, paying for things we needed, and even sometimes for things we wanted, when we did not have the cash to legitimately do so.

But what do you do when the medical copayments skyrocket, when your school district assumes you're all loaded and arranges a ton of wonderful and pricey field trips for your (lucky) kids, when your (ratty old) car dies a shuddering death and you have to revive or replace it because one of you needs to get to work and the other has a zillion medical and therapy appointments, not to mention after school activities, to get the kids to? (Okay, take a breath.)

The difference between us then and now, is that now we do not pretend we can afford more than we can. We didn't go out much then; we go out less now (read: never). Now we shop at Aldi twice or thrice a month, instead of Trader Joe's twice a week. We used to occasionally buy clothes at Macy's; now we buy used duds more often than not (and you know what? It's not bad! You can get some great stuff that way).

The best thing that has happened to us in the past year is that we've taken our credit cards out of our wallets and put them in a drawer. Now, the only card we each carry, apart from our library and AAA cards, is a debit card. Of course, I resisted this mightily when Lars proposed it.

"What if there's an emergency?" I whined.

To which Lars replied, "Of what sort? Sartorial or gustatory?"

To which I replied nastily, "Medical, Smart One. Or automotive. Or one involving...something scary."

He held out his hand in silence until I grabbed my purse, took out my wallet, and dumped three cards in his hand.

"Fine," I snarled.

That was last March. And you know what? There's not been one emergency -- sartorial, gustatory, or medical. (There was one automotive emergency -- our Camry with almost 200K miles on it needing work that would cost more than it was worth -- and we did have to go into debt to resolve it. But the loan is super-low interest and we now have a grandmotherly, sandy-gold Corolla with less than 50K miles on it. It's not the Miata Lars has been fantasizing about but it's got a sort of elder-cache about it, which is something.

So I guess we were always dealing in sheep dung rather than dining at Versailles -- but now we embrace our inner shepherds. Marie Antoinette had a fake dairy barn, but we have a cute little house and no more credit card debt and a spiffy gold Corolla any Nana would be proud to own.

Sunday, December 18, 2011

Holiday Gifts

This Hanukkah/Christmas season is posing an interesting challenge. In the days when we lived beyond our means (that would be most of our days until a year or so ago) I'd simply charge up a bunch of presents for the kids, for teachers and therapists. Not for Lars, though -- we can't justify spousal gifts except for something small on birthdays. Even when we were living like the upper-middle class people we weren't, we couldn't justify gifts for each other.

And really, we THOUGHT we were super economical, looking for deals, buying the least expensive remote control car or the paperback edition instead of the glossier hard cover. I'd go looking at TJ Maxx and Target for cute, cheap teacher gifts (tiny picture frames for $7.99 each, or a box of pretty little note cards for six bucks. Problem was, we had a boatload of people to buy for if you counted, along with the teachers, the therapists, music teachers, and SPED administrators we wanted to thank every year -- not to mention our dear nieces and nephews, my brother and sister-in-law, R-- and J--, and our closest friends. Grandma and Grandpa insist that we not buy them anything, and we gratefully oblige.

Anyway, this year we are no longer living like people who have expendable income, because we have even less of that we did before. Now that I am unemployed we have to ACTUALLY BE SUPER-ECONOMICAL and not just play at being shepherds and shepherdesses. We are no longer aristocrats, folks -- we are tending the sheep.

I actually don't mind sheep -- I find them rather sweet. So it's all good, but the problem is, how do you buy gifts when you have about $100 available for the whole shebang?

Here's what I've been doing:

  • Making homemade assorted truffles and packing them in festive, be-ribboned bags for teachers, etc
  • Searching Craigslist for used video games (most of the Chez Delaunay decor is brought to you courtesy of Craigslist, just fyi)
  • Visiting Savers in search of that perfect shirt, pair of boots, or jacket for Saskia, and -- if we are extremely lucky -- for some kind of video game for Benjy
  • Buying personal care items -- bath gel, moisturizer -- at TJ Maxx
I wish I could snap a photo of my truffle bags and post it here but Lars and I still use dumb phones, and we have lost the usb cord to our camera and can't upload pictures. Welcome to our world.

You know, I don't mind at all that buying/making holiday gifts is so much more work than usual. I think of it as a problem to be solved -- how do I take care of everyone and maintain my budget? And it feels REALLY good to know we are not going into debt just because someone decided you need to ply everyone with goodies at the winter solstice.

I'll save that for when I have to cough up a couple hundred dollars so Benjy can continue fencing in January. He loves it, feels good about himself when he does it. THAT will be money well spent.

Thursday, December 15, 2011

One Last Post about Moths and Then I'm Done

So, Benjy has caught wind of my anti-moth platform and is displeased.

Benjy: "Mom, what do you have against moths, anyway?"

Me: "They get very aggressive when you try to kill them and miss."

Benjy: "Then don't try to kill them."

Me: "I won't if they don't insinuate themselves into my house. By the way, the moth that lost its life in my car has been disposed of. So you don't have to do it."

Benjy (exasperated): "Geez, Mom. That moth was a person, too."

Body Sox and Other Sensory Pleasures

A person our family is lucky to know -- K.H., the autism specialist in our school district -- brought Benjy a gift today: a "body sock." For those of you who don't parent a child with what they call "sensory issues," this body sock thing will sound bizarre.

What the heck could a body sock be?

No, not that.

Yeah, that.

It's like a spandex cocoon that offers pressure all over -- and pressure is something kids on the autism spectrum seem to really like. Remember Temple Grandin's hug machine? She wants pressure but can't tolerate a human hug. So, being Temple Grandin, she designed and built a solution:

Benjy really enjoys his body sock. He says it makes him feel like a flying squirrel -- and the power to fly is high on his wish list. K.H. got us the body sock by reaching out to her network of families. One of these families had a body sock they wanted to donate to someone who needed it, and we were the grateful recipients.

What I love about disability families is the way we've got each others' backs. Okay, we may disagree on the whole vaccine issue -- and believe me, there's some vitriolic discourse out there -- but I firmly believe that when the chips are down, one disability family will help another. I know I relish the opportunity to give back, because we have received so much generous support from so many people.

And if any of those families are really lucky, they'll have a person like K.H. in their lives.

Of Moths and Men: Afterword

In my last post about the dreaded moth, I told you I was going to ask Benjy to dispose of the corpse. I was going to do it after school yesterday, and I'm pretty sure he was going to oblige.

But yesterday morning I woke up to a deflated tire. Flat as a pancake. So Lars pumped it up with his super-duper bike pump and told me to drive it -- gingerly -- to the garage.

I did not give a second thought to the half-inch of dust on the dashboard, the leaves and pine needles on the floor, the crud (read: food detritus) all over the place that could feed a small impoverished village for a week. Those guys at the garage have seen it before.

So I limped on over to the service station and they extracted the nail from my tire, gave me a couple of light bulbs, an overdue oil change, and the December inspection I was probably going to forget about until the second week in January.

I indulged in a little Starbucks love while I waited, as the garage is only a block away from our local Sbux, and this is the season of egg-nog lattes (I sure hope Lars isn't reading this). And when I picked the car up, the guy said in heavily accented English:

"Next time you gonna get a new axle. I don't wan' you to have more damage, but for today I know you gotta pick up your son at twelve. And, we gonna give you a detail and you think the car is bran' new. It's only $300 but we gonna give it to you for less, say $275. It's gonna smell great an' you think you got a new car."

"Oh, yes," I replied. "Sure." Thinking, There is no way in hell I'm paying $275 to get the dust and the pine needles and the crud out of my car. I'll make Lars do it for nothing.

So I forked over a hundred and fifty bucks for all the work and drove home. Just before I pulled into my driveway I glanced at my dashboard and it hit me: THE MOTH WAS GONE.

And now I am embarrassed. Because those guys at the gas station must think I am some sort of lunatic, or at least very, very dirty. Both of which are probably a little bit true.

Tuesday, December 13, 2011

Of Moths and Men

There is a moth on my van's dashboard, nestled comfortably in a half-inch layer of dust. It's dead.

I hope you don't ask me why the moth is lying there dead in the dust. If you do, and I am more or less truthful in response, I will have to tell you it's because I'm too lazy to do anything about it. If I'm *slightly* less truthful, I will tell you that in order to dispose of the moth I will have to pick it up, and even with a tissue between me and the moth, that is a distasteful venture.

(Digression: I think the reason I hate moths so much is because of a close encounter I once had with one. I was a junior in college, taking a summer course at a university near my parents' house. It was nighttime. I was sitting at the kitchen table writing (longhand -- gasp!) a paper. My parents have this groovy seventies table -- in 1984 it was a little less vintage than it is now -- with a lamppost rising out of the middle of it. At the top of this lamppost is a round white globe that is also a light. A moth would love this, right?

So there I was, applying pen to paper and trying to ignore the moth fluttering around over my head, when I had a grisly thought. What if that moth got it into its non-existent brain to fly into my rather loose blouse? (I can't explain this blouse but it was the mid-eighties -- need I say more?) I was flapping around in the blouse, and it occurred to me that the moth could fly right in.

And then, Readers, It Did.

I screamed, did a little dance, swore eternal hatred for all lepidoptera of the moth variety (I am okay with butterflies. They have never offended me).

So that's why this moth is lying supine on my dashboard. It died there, I said, "GOOD!", and now I am too scared (or too lazy, take your pick) to clean it up. And this moth is of the Glenn Close-Fatal Attraction ilk. Saskia and I got into the car the other day, and I pointed it out.

"Oh, look," I said. "That moth finally died. About time."

"Ew," said Saskia.

We drove a block and all of a sudden that dead, supine moth staggered to its feet.

"Whoa!" I said, nearly losing control of the car. The moth ignored me and tottered directly toward Saskia. She screamed. So did I. We watched it make its way toward her and screamed some more. Then, nanoseconds before dropping onto Saskia's lap, the moth expired. For real.

I may get around to removing the corpse later this week. Or I may ask Benjy to do it.

He likes bugs.

The Stylist

Benjy recently received a nice little inheritance from a friend: a big bag full of really nice, gently used clothes. Ben pretty much only wears used clothes, as we have a steady supply of them from my cousins, whose son is a few years older.

What made me laugh when I sorted through this latest catch was the two mass-market/haute-couture (did I just coin a new term?) T-shirts. The Dolce and Gabanna and the Armani Exchange ones, to be specific. Sitting with my friend in the cargo area of her van, I held up the D&G shirt, which prominently displays a D and a G in a sort of backward embrace, and I said, "What's this?"

Now, it's not that I've never heard of D&G, or seen their logo, although last I knew Target does not sell this brand so  it's kind of off my radar screen. It's just that the thought of a shirt intended for Ben bearing this logo was too ridiculous to be processed.

"It's Dolce and Gabanna," said my friend. At which point I burst out laughing.

The reason this is so funny, Readers, is because Benjy is the boy who trots around with his shirt backwards and inside out unless I catch him and make him right himself before he walks out the door. The kid who chooses sweat pants and brown shoes and white socks and some sort of collared monstrosity unless I step in and lend my assistance. High waters? No problem! Dried maple syrup? Hey, it was going to get food on it anyway.

The thought of my boy wearing designer duds is too funny. But that's what's so great about Ben. If he's not making me tear my hair out or sob myself to sleep he is infinitely amusing. And the best part is, I'm laughing with him, not at him.

Monday, December 12, 2011

Nothing Ventured, Nothing Gained

Those of you who know me personally -- and, I think, other readers of this blog as well -- know that I am a writer. I usually have one or more writing projects going at any given time. Right now I've got a novel and a short story out on submission, and as of this morning I can add to the list a personal essay about parenting a child who wants to die.

I first started this essay last spring, wrestled with it for a few months, and ultimately crafted 9.5K words, every single one of which I loved. My writing group read a couple of drafts, and they loved it, too. But it was really too long for most journals and magazines. So last week I took out the metaphorical machete and slashed 6,000 words. Ouch. But you know what? Now I love it even more. And this morning I submitted it to a major, major women's magazine (circulation 4 gazillion) in the hopes that they will love it, too.

The odds are certainly against me. But the odds always are sucky when you're a writer. Publishing is not for the faint of heart. I've had a good deal of success at it, but far more rejections than acceptances, that's for sure. Yet I have a feeling about this essay. I think it's my best work yet. So if Major, Major, Magazine rejects it, maybe Major Magazine will take it. and if not, there's always Minor Magazine, waiting in the wings.

I think I'm not narcissistic when I say, The Story of Raising Benjy is a story that needs to be told. Did you know that suicide is the third-leading cause of death in young people aged 10-14?. The National Alliance on Mental Illness ( estimates that each year in the U.S., approximately 2,000 children and adolescents complete suicide -- and of course, many thousands more contemplate ending their lives. Although it’s a problem on the rise, there is not much public discussion about children and suicide.

I hope my writing, in this blog and elsewhere, breaks open some of that silence.

Friday, December 9, 2011

Disability and Work

There's a thread spinning out on my autism listserv about autism and full-time work. This is an issue I've broached before on this blog, and it's one any parent of a disabled child (or child of a disabled parent, for that matter) has confronted. How do you adequately care for your loved one and be a good employee? And if you can't be a "good" employee (there might be different definitions of "good" out there) then how do you work it out with your boss?

Being a "good" employee, in many bosses' minds, means being at the office at the same time every morning and staying in your seat until five or six or seven o'clock. It means volunteering to stay late during crunch times and basically making every sacrifice for the good of the company. Businesses are all about the bottom line, and if you are not perceived as contributing to the accumulation of profit then you are likely to lose your job.

If your child has medical appointments in the middle of the day more often than, oh, once every eight months, you are likely to lose your job.

If you get called by your child's school and have to pick her/him up early because s/he is breaking down, and this happens more than, oh, once every eight months, you are likely to lose your job.

If you are a bit distracted because your life is going down the toilet, because disability reigns in your household and is a despot, you are likely to lose your job.

And if you don't lose your job, you are likely to be demoted. Or never promoted. And you might earn less than your co-workers, too.

Sometimes it's easier to just not work. But the cost of not working is astronomical over one's lifetime -- and of course, for many families this is simply not an option. I would venture to say that most disability parents are either struggling to make it at work and successfully do their second (or third) full-time job at home, or one adult in the family is not working and that family is broke.

We used to be a family of the former sort. I was teaching college English full time and taking care of a multiply disabled child, and I was doing neither very well. Then I reached my breaking point and dropped down to one class a semester. Boy, have we been feeling the pinch. And tonight I heard that the one class I was scheduled to teach next semester, in an unpopular 8 a.m. time slot, has been canceled due to low enrollment.

So here we are, desperately running the numbers, figuring what further cuts we can make to our already spartan lifestyle.

But I think I'd rather not work and give up even more than we already have, than be worked half to death and always feel like I'm not really there for my kids. Lars mentioned to Benjy this morning that I might have a lot more time for him soon. And you know what he did? He cheered. So now I'm happy.

Thursday, December 8, 2011

Trolololola -- or life at Chez Delaunay

I wanted to follow the sad video with one that will make you laugh. Benjy found this last night. Good mom that I am, I watched it with him a few times -- don't I deserve a medal or something? His peals of laughter -- okay, OUR peals of laughter -- made it all worth it.

We had the distinct pleasure of hearing some highly dramatic and operatic renditions of this -- song? for the rest of the evening. Long after I thought he was asleep I passed Benjy's room and heard him trolololling, sotto voce.

Here's the thing: my child has a voice. He knows how to sing. We never knew that until this month. All of a sudden he's singing, and I can't get enough of it. If I have to listen to him mimic this bizarre dude trolololling, so be it. I'll take it, baby!

P.S. Are you going to thank me for the ear worm? You're most welcome!


Bullying is such a heartbreaking problem. And when your child is bullied, whether because he or she is gay, overweight, disabled, or just "different," the pain you experience as a parent is unbearable. Benjy has endured mild bullying but mostly being treated as though he's invisible. He was deeply lonely for all of his years in public school. Always the one without a partner, without a friend to eat lunch with.

This is not happening now, at the Joy School, but it sure has happened in the past. So when I saw this video I wept:

This boy Jonah, who started cutting in second grade, could be Benjy. Ben fantasizes about cutting. I've caught him with a pair of pointed scissors, trying to work up the nerve to do it. He has told me he will. Well, maybe all that's changed, now that he's found his place at the Joy School. But ours is a boy who engages in acts of self harm. Whose first suicidal ideation appeared at age four. Ben has a lot in common with Jonah. I hope Jonah's trajectory is like Ben's, a path, however circuitous, to happiness and peace. And I hope with all my heart that Benjy's path remains sheltered and sunny.

Here's to all the Jonahs and Bens -- the world would be a lot poorer without them.

Wednesday, December 7, 2011

Today's Funny Convo

Benjy: What do you want to know about the carboniferous era?

Me: What should I want to know about the carboniferous era?

Benjy: You want to know how big the bugs were.

Me: Okay, shoot.

Benjy: Dragonflies as big as eagles.

Me: Yikes!

Benjy: And then there's this thing I found online, "Plants Gone Bad." You don't want to know about that one. But I'll tell you just a little. There was a tree that looked like a naked woman, and a mushroom that -- well, never mind.

Me: *grin*

Monday, December 5, 2011

A Hard Decision

Lars and I are trying to make a decision. Usually we are good at this. We share a set of values (pretty much) and goals for us and our children, and we even share a taste for some of the same foods. (However, I WILL NOT EVER taste that leftover medley of spaghetti, scrambled eggs, sausage, ketchup, and hot sauce, all covered in cheese, that he tried to coax me to eat last night. Or his famous cheese-peanut butter-mustard-salami-strawberry preserves sandwich. Ugh.) So our decision-making process is usually painless and fast.

But not tonight. Because tonight we need to decide whether to cut back or even to end the intensive emotional health services we've been lucky enough to get for Benjy, courtesy of the Children's Behavioral Health Initiative (CBHI) here in Massachusetts. We got involved with CBHI after Ben left the hospital, and it's been amazing. A whole team of people, comprised of mental health professionals as well as Grandma and Grandpa and some dear, supportive friends, that comes together to brainstorm and execute a plan for Keeping the Boy Afloat. And by extension, keeping the entire Delaunay family above water. It's been a wonderful, amazing thing.

But here's the rub. At this point in time, Ben doesn't want to die. He's got some stuff to live for, and he knows it. Anxiety is not coursing through his body. Sadness isn't, either. Not much. Sure, last night was a bit hairy. But overall he is doing better now than we have EVER seen him. In his short eleven years he has never known the kind of peace he's feeling now. Has never been so OK. And that means when our Intensive Care Coordinator and Family Partner come to the house, there's simply not that much to say. There's no real justification to drag all these lovely people, therapist and school autism specialist and dear friends, out into the dark evening to meet and discuss US, because we are doing so damn well.

This is a good problem to have, no? But I'm afraid to cut loose. Because I don't trust it. Experience has shown us, again and again, that good spells, like good weather, are ephemeral. They don't last. And what if something goes wrong and we need all these great folks, but they're busy on other people's teams and can't get to us for a while? Of course I know that's silly. Someone will be there for us. But how long will it take to get back on board? And will we be able to wait?

It will be late when Lars gets home tonight; he's in crunch mode at work. But I'm going to pull him over to me and offer him a glass of wine, and I'm going to make him help me decide.

Sunday, December 4, 2011

The Old Story

Sometimes when you think things are going great, you get a nasty surprise. For a few weeks now, Benjy has seemed happy, especially with school. He's been lively and engaged. He's been learning. (Tonight he informed us and the dear friends we were eating with of the causes of the French and Indian War, which the rest of us over-educated folks sitting around the dinner table had forgotten.) There's been a fair amount of humming and singing going on around here. Hes' been eating-- real food, that is -- which is a relatively new and welcome development.

So imagine my surprise and dismay when tonight at bedtime he thrashed about in his bed and begged me not to send him to school tomorrow.

"But you love school," I reminded him.

"But I can't go tomorrow."

"You have to."

"It's not FAIR, Mom! There should be more days off than there are school days. It's not right!" His body was so agitated, and his mind, too, that he almost wrenched himself off the bed.

I stroked his damp hair. "Go to sleep and we'll see how you feel in the morning." This is the oldest trick in the book. Tell him you'll think about it when you really have no intention of letting him stay home. He sighed bitterly. I kissed him goodnight and went across the hall to read email. And after a few tense moments I heard him weeping.

I sat there, not knowing what I would do, until he called me. Then I went to him.

"Can you lie with me?"

"Sure, honey," I said. I lay down beside him and his rigid body relaxed. His warmth was somehow consoling.  His arm, which he'd draped over my waist, slipped off. And as is always the case when I lie in his bed -- a rare occurrence these days, and rightly so -- we both fell asleep. That was an hour ago. I'm up again, and I'm thinking. Ben is such a vulnerable boy. He probably always will be. Probably every time I think we've turned a corner we'll slide back a little. Two steps forward, one step back. But that's okay. I've given up on that trajectory you dream about when you're twenty-six, or thirty-two, or even nineteen, and you start dreaming about babies. And you know what? Heart-ache be damned, I'll take what I've got.

He's sleeping peacefully now, and I will be sleeping soon. And we will see what tomorrow brings.

Thursday, December 1, 2011

And Now, Back to Our Regularly Scheduled Program

Hmm. There must have been a reason for that brief political interlude, but I've forgotten what it was (not!). Anyway, Benjy is much more interesting than taxes (although gratitude is a nice subject). And today I've been thinking about his early attempts at talking.

First of all, Ben was a very late talker. Until he was at least two he spoke mostly in an alien tongue. Then, slowly, the words came -- but in funny ways.

For the longest time he substituted Ws for Ls (that's a nice umbrewwa"). I think he was six when he got the hang of Ls.

He also substituted Ts for Cs. So, his ABA therapist was known as "Tortney." And popcorn was (this is my all-time favorite) "pop-torns."

He used the most charming locutions: "May you give me a drink?" "Can I feel you better?"

Chipmunks were "chickmunks." And for a while, I, Readers, was a "muvver." In the cockney-est sort of way.

Of course, Saskia had some howlers, most notably, "Ornage" for orange, and "sike" for slide (as in, "is the ornage sike sleeping?" -- that's what my sister-in-law, J--, told her when she wanted J-- to take her to the park and J-- was tired or busy with something else).  

But the hands-down funniest thing Benjy ever said was the day he announced, "Ladies and Gentlemen, we have a Striped Nickel!" I've already written about that -- see "Benjy and the Striped Nickel."

In what funny ways did/do the children in your lives use language?

What We Give

I was thinking about my last post and realized it sounds like we only take from the system. We give, too. We are happy when our taxes go toward education, infrastructure, health care coverage for the elderly, needy, and disabled, scientific research and arts funding. But I think I speak for many who are caring for a disabled loved one when I say, THANK GOODNESS for the supports, financial and moral -- including those that come from the government. Thank goodness for all the amazing people out there who work to make a difference in the lives of families, and who succeed in doing so. Massachusetts does pretty well in giving a hand to those who need it. That's why we're here for the long haul, and that's why we give back in any way we can.