What I'm Up To

Greetings, faithful Readers!

I hope your (waning) collective summers have looked like this:

And this:

Mine has not been QUITE so blissful. But I do love the light, the cherry tomatoes ripe for the picking in our garden, and the lack of stressful HOMEWORK. I also like the later wake-up. Oh, yeah.

Here at Chez Delaunay we are dealing with several issues on the junior varsity level. Severe tics and growing anxiety on the one hand, and painful joints (one more piece of the lupus puzzle) on the other.

One cool turn of events: in spite of aching knees and elbows, Saskia kicked butt at her freshman volleyball tryouts and made the team despite stiff competition. I just hope the rheumatologist doesn't tell her tomorrow morning, at her appointment, that she can't play. That is one scene I do not want to witness.

Anyway, when not driving children all around greater Boston, here's what I've been (or will be) up to:

• Submitting stories to journals
• Writing an essay about one of my life's great regrets (it happened thirty-six years ago and involved me receiving precisely what I had yearned -- and pleaded -- for since young childhood. Ironic? Yes!)
• Applying for  Radcliffe Fellowship which, if I am extremely lucky and get one, will fund a year's worth of memoir writing (and then some)
• Conceptualizing the memoir I will be writing about raising a child who wants to die
• Preparing to apply to Yaddo and other artist's colonies for next summer (another endeavor that will require great luck, which seems to be in short supply around here)
• Writing a column pitch to an online literary journal, about -- you guessed it -- parenting a child with mental illness
• Figuring out whether we can get Saskia on Mass health like her brother. I think if the lupus Rx becomes definitive we can -- which can't happen too soon as these medical expenses are BANKRUPTING us
• More stuff I can't remember off the top of my head
• Sitting just quietly and smelling the flowers, like my favorite bull, Ferdinand (great story!!)

Thank goodness for unemployment!

When It Rains It Pours!

I always loved that Morton Salt logo: when it rains it pours. What a great pun!

And I often use that hackneyed phrase to describe life here at Chez Delaunay. Because bad things come in threes (or five, or tens, as the case may be). And just when I think I will have to get in my car alone and run away to Big Sur and sit just quietly, like Ferdinand the Bull (remember him?), and gaze at the flowers, or the sea, one of my kids does some beautiful thing that takes my breath away, or my husband tells me he loves me in just the right way, and I think, OK, I'll stay here.

Plus, remember: some Rockin' hermit crabs reside here, as does a Hellacious but quite superlative Hound.

 So I CAN'T go to Big Sur. Not yet.

Anyway, the metaphorical rain storm is my excuse for not blogging recently.

Stuff like: Benjy unable to get to his summer program because of depression/anxiety/general non-functionality, and then, Bam! almost out of the blue, developing severe facial tics that make him look like he's having a seizure.

Saskia catching her monthly respiratory illness, developing a tenacious sinusitis that defies --defies! -- all antibiotic intervention  for five weeks and then foments a severe migraine, which emerges during our first vacation in many years. (I spent seven hours with Saskia in an ER on the Jersey Shore. This is something I can recommend to anyone interested in -- uh -- unusual human specimens.) Saskia felt and looked so damn sick I actually thought she was going to collapse on her walk from the parking garage to Children's Hospital on our visit to neurology -- 10th specialist in the past 1.5 years, I believe? -- the day we got back to Boston.

Six weeks of foot pain for me, and my foot blossoms into a huge thing that my brother R-- thinks looks like a loaf of bread and could suggest a blood clot. Panic ensues and I spend hours having x-rays and ultrasounds to rule out a fracture and a clot, respectively. All negative so I'm off next Monday to visit an orthopedist at one of the four area hospitals I frequent on a regular basis.

But readers, I'm not complaining. Because I just finished a book that makes our lives look like a picnic. It also happens to be a beautifully written, poignant, and, finally, hopeful memoir of parenting a child with mental illness (sound familiar?).

The Boy Who Loved Tornadoes is about Chase, whose illness is quite different from Ben's. Chase has severe, severe psychosis, and his mom, Randi Davenport, is single during the worst of his illness. I do not know how she does it, advocating and caring for Chase and his typical sister, Haley.

But actually, I do.

When people say to me, "I don't know how you do it," I reply,  "You would do it, too. You just do what you have to, because the alternative is simply unacceptable." People have amazing stores of strength and courage, actually. Some folks can stand up to a gunman, to terrorists. Think of those brave people who saved lives, though not their own, by standing up to the 9/11 terrorists over that field in Pennsylvania. I could never, ever have done that, but I have my own strength. Randi Davenport has hers. The 9/11 heroes had theirs. Soldiers, and doctors, and social workers have theirs. Our strengths are of different sorts, but people really are capable of great things, as much as the current social and political discourse seems to belie it.

Last night I took Benjy to see Diary of a Wimpy Kid: Dog Days, and as we walked into the theater he said, "Hey, can we sit apart from each other, in different rows?" And I said, "Really? Because I would quite enjoy laughing with you." And he said, "OK." And when it got really funny, he laid his head on my shoulder and laughed and laughed. After a while he just kept it there, making contact with me in a way I totally loved. And the darkness all around us was its own blessing: it hid his facial grimaces, his rolling eyes and jerking head, and spared him social stress and embarrassment for a whole two hours.

If that weren't enough, Saskia has been positively huggy these days. She keeps waylaying me and holding me tight. She's letting me know that, even if she's fourteen, she needs me and loves me.

What did I do to deserve all this? The good and the bad, I mean. I don't know, and I'm trying not to question it. I think I'm just going to go have a loooong shower.

Good news is, I'm back, and I'll try not to stay away so long next time, even if it's pouring.

Pray Sir, Whose Dog are You?

What popped into my head just before I sat down  to blog tonight was the inscription Alexander Pope wrote for the collar of George II's little dog:

I am his majesty's dog at Kew.
Pray, Sir, whose dog are you?

I love the satire of the 1% here (get it? The folks fondling this little dog and reading its collar were courtiers, the King's inner circle, somewhat like the 1% of 2012). But really, the reason this verse jumped into my head tonight was not because I crossed paths with some heartless billionaire (not bloody likely, mates).

It was the second line, out of context, that spoke to me. Except I substituted the word "boy" for dog. As in, "Who the hell is this man-child sitting in the back seat of my car. Hey, Kid! Have we met?"

I mentioned in a recent post that puberty is changing our playing field. Yup. And my big question is, how will puberty affect Benjy's (fragile) mental health? I'm afraid we are getting an inkling of the answer.

Yesterday we began a vacation (I know, unbelievable) with my best friend and her son, who happens to be Ben's best friend. We did this once before, about three years ago, when Ben was in the throes of PTSD (the result of a scary tire blowout on the Massachusetts Turnpike the year before. Ben would not ride on any highway or large road for about two and a half years. Major panic attacks would ensue if we tried).

That last vacation was really tough; two days in, Benjy could only think with deep agitation about the impending ride home. It was not a fun time.

But this summer we though we'd try again, This time the road trip was about as long as the last (6 hours) but we'd all be riding together in one van.

I should have known how it was going to shake out when, on Thursday night, Ben did not sleep much. Then, when the social worker at school called me on Friday to say he'd needed to sleep most of the day, citing his anxiety about the trip, it should have been confirmed: this trip was going to be a problem. But last night we drove to A and M's house in Connecticut, where we would sleep over before driving to the Jersey Shore this morning. And last night Benjy simply did not sleep. I learned this when I woke at six this morning and found him in the living room using my laptop. He told me he'd been up since five, but when A woke she informed me he'd been up all night -- and kept her up -- watching YouTube videos and shooting a toy metal gun belonging to M.

Click, click, all night long, right next to A's bedroom. I'm surprised A. didn't kick the whole lot of us out to our car.

I gave Ben an Ativan an hour before we left, but Readers, let me just say that Ativan does NOT avert psychiatric meltdown. It may blunt, but it does not prevent.

The whole six hours, he made annoying noises, uttered his creepily dark ideas, was insolent and angry. At times he had an odd, displaced look about him. It's a look we hadn't seen in a long time.

I could say more about the way Benjy was today, but it makes me too sad. Suffice it to say that I did not completely recognize him. Who he was, was a variation of whom he's been in past, dysregulated days -- but different, too. Angrier, and more insolent. Resistant. He scared me a little.

And one of the worst things of all is that my dear friend, who has always cared for Ben, and who has ALWAYS been there for me on this difficult journey, is not getting it. I can see in her eyes that she doesn't like him right now, and that she doesn't believe he's anything but a badly behaved kid.

That, as any parent of a kid with autism and/or mental illness will tell you, is a simple reality. People look at us like we are the worst parents ever, like our kids are losers, or bad people. And that hurts something fierce.

So I did the only thing I could: I doped him up on extra melatonin and his usual Clonidine so he will sleep tonight, and crossed my fingers that tomorrow will be better.

Maybe A. was just tired. And maybe Benjy is tired, too.

God knows I am. I'm exhausted.

Where You're Coming From

Readers of this blog hail from all over the world. That, my friends, is SO COOL. Such a grand way of being connected!

Here's where you all came from over the past week:

United States
India
Russia
United Kingdom
Malaysia
Philippines
Sweden
Ukraine
Australia
Estonia Every week it changes a little (but my largest readership is always American). Every week I check, because it is such an honor to have readers from Estonia and Sweden and the Ukraine and EVERY OTHER country on that list. Even if I don't know exactly where your country is, geographically speaking. Especially if I don't. Thanks as always, Readers, for dropping by. Wot larks! to quote my all-time favorite blacksmith, Joe Gargery.** **Great Expectations. You MUST read it. You can wait till tomorrow to start. There will be a quiz on this blog sometime soon. Hey -- anyone else have a favorite blacksmith? (*pandering for comments*)

I am FLUMMOXED

I would think that after 8, 10, 12 years on the job -- any kind of job -- most people know how to do it. Wouldn't you?

I mean, after a couple months helping my Dad put braces on kids -- that was my summer high school job, "Orthodontic Chair-Side Assistant and Occasional Front-Desk Chair Warmer -- I pretty much had it down. Sure, if some twelve year old had thrown up all over the place while getting an impression done (a classmate of mine once DID throw up in my father's chair but thankfully I was not present) I'd have shrieked and run away, but overall I got the suction, the water sprayer, the bibbing of patients and the handing over of instruments. It was not brain surgery.

And after a month of selling well-heeled women's clothing clothing for well-heeled women* at The Talbot's in downtown Boston -- to impatient businessmen who needed birthday presents for their wives and were willing to devote four minutes and a hundred bucks to the process -- I more or less figured out the cash register and the fake smile. (I did not EVER perfect the folding-and-inserting-in-bag-while-impatient-dude-taps-foot-and-frowns part of the job, however.)

And after, oh, I don't know, three or four years of teaching college English I was pretty good at it. Of course, there were always new courses and new material to master well enough that I remained smarter than my students (this is harder to pull off with graduate students) but overall I learned how to do that job and do it well.

So why the hell haven't I figured out how to be a parent? Because it's going on fifteen years and once again I am simply flummoxed.

Okay, I'm exaggerating. It's only EIGHT years since I've been parent to an off-kilter child (Benjy's mental health issues began at age four). But still.

EIGHT YEARS? I hear you thinking. AND YOU STILL DON'T GET IT?

Well, no. The thing is, I thought Benjy was doing SOOO well. He seemed happy enough, had made some new friends, was (mostly) making it to school. Then there was that dysregulated day in Connecticut I recently blogged about. And then Saskia told me he "doesn't seem right." And then -- because I am impressively inattentive these days -- I realized, retrospectively, that he's been  kind of downcast, and withdrawn, and unsmiling for quite a while. And now, once again, he is begging me to keep him home from school (the Joy School runs a summer program that is school, not camp).

The past two weeks it's been a struggle to get him to go. Now, I can't say I blame him. Go to school in the summer? that's not fair!

But he can't manage camp, and if he doesn't go to school he will literally sit in front of his computer ALL DAY LONG. And if I complain and ask him to do something else he will tell me, bitterly, that there is NOTHING else to do and his life is empty. Then he will suggest some impossibly expensive thing, like buying electronic stuff or inviting a friend to the aquarium, or some impossibly inadvisable thing, like finding a gun shop where he can fondle the Glocks.

So my question is: what do I do? Does this depression mean he needs a med change? More therapy? (We've taken a summer hiatus because he was simply refusing to go.) Should I be calling his psychiatrist or is that over-reacting? I do not know. If he would only talk to me maybe I could figure it out. But he is resolutely close-mouthed. He resists all of my questions, even benign ones. His affect is flat, his face unreadable, except for the sadness there. I cannot reach my boy, and I am at a loss for what to do.

Inevitably, in life, things cycle back. We might think we're done with this or that conflict, but we almost certainly are not. The repressed always returns, as does winter darkness and the full moon. Often there is comfort in these cycles -- thank GOODNESS the days will get longer again in spring, and stone fruits will come back just when we've forgotten their particular species of firm sweetness.

But this return, the return of my off-kilter boy, I find unnerving. And even though depression and anxiety have always waxed and waned around here, they throw me for a loop when they re-emerge.

So here we are again, and not for the last time I am flying by the seat of my pants, as Lars would say.

* English grammar was obviously not on my graduate school curriculum. My German grammar is far, far worse.

Like Eating?

If you do you'll like this:

http://germanjewishcuisine.com

My friends Gaby Rossmer and Sonya Gropman have started this blog about German-Jewish food -- including recipes. I remember eating the fried potatoes with caraway seeds myself, at my grandma's Washington Heights apartment many years ago.

I'm feeling nostalgic!

It's a beautiful blog. I think you'll like it -- even if you have no ties to German-Jewishness or Washington Heights. Enjoy!

What Music Does

My Dad sent me this video this morning and it made me weep. Literally. To see all those beautiful people, bound by beautiful music, flushed with joy and the pleasure of this unexpected gift. In this age of suffering and division, we need more music, to heal us and bring us together.

Watch it and and start your day with a smile:

In Which I Learn to Accept Benjy's Books

What's a mother to do when her twelve-year-old computer addict asks her to drop by the Barnes and Noble on the other side on Route 9 and by a book?

This mother swerved into the right lane u-turn exit, narrowly avoiding a grandma in a golden Toyota Corolla (note to self: next time CHECK YOUR MIRROR, even if giddy with excitement). Then she backtracked a quarter mile to the B&N in which Benjy's reading habit would shortly be born.

Yeah!

So, we went into the store and Ben IMMEDIATELY wandered into the aisle with the books entitled "Major Battles of WWII," and "WWII Tanks," and  "The Encyclopedia of Guns and Machine Guns."

That last one scared the bejesus out of me.

He picked it up. Gazed lovingly at the firearms on the cover. Slowly opened it and scanned the first few pages. Savored the damned thing like a steaming cup of Ovaltine in mid-winter.

He glanced at my frowning face.

"Mom?"

"No." I would be damned if I was going to stoke this obsession.

"Why not? It's an encyclopedia. It's a HISTORY OF MODERN GUNS."

"No, no, no. Besides, don't you have a library book that looks just like that somewhere in your room, under a pile of laundry or something?"

"That's different. It's not an encyclopedia."

"Oh," I said. "And have you even read it?"

"Of COURSE I have. Several times."

"Well, I am NOT going to spend my money on a book like this. How about a nice novel? A mystery or fantasy or something." (I have given up on him reading "All Creatures Great and Small," much to my chagrin.)

Benjy scowled. "How about this history of WWII, then?"

This made me uncomfortable. He could be reading about bovine bowel surgery in rural England but instead he wanted to look at pictures from Auschwitz? Good God!

"Ben," I said, "you are freaking me out. Go look at the novels."

Of course, there were no novels that quite met his specifications. So he asked for the computer books.

We rode the escalator to the second floor and perused the mind-numbingly boring computer science line-up, but he wasn't enticed by "Excel for Dummies." Thank God!

After a few minutes browsing the field guides to North American birds, and a few rebuffed suggestions on my part of interesting-looking options, he found his mother-lode.

A whole rack of survivalist literature, Such as, "Surviving Hell on Earth," and A Survivalist's Guide to Everything." He had struck gold.

Shit, I thought, remembering that only a year or two ago he was OBSESSED with and TERRIFIED by the end of the world, which was coming in 2012.

"I want this, Mom," he said, handing me the Survivalist's Guide.

I hemmed and hawed. "Uh," I said helplessly, as he gazed imploringly in my eyes. He did watch Bear Grylls, the survivalist, on TV. He'd seen Bear eat and drink unmentionable things, build shelter and weapons from who knows what. How different was this?

And then I had a rogue thought: Maybe it's okay that Benjy doesn't like to read novels. That his interests are WAY different than Lars's and Saskia's and mine. Maybe that even makes him an interesting and independent kind of guy!

Now, I'm not saying I approve of all these subjects of Ben's obsessive interest. But Ben is not me. And reading is reading. And at some point I have to let him follow his own path.

"Okay, Ben," I said. "Let's go." But this is an expensive book. You'll have to do quite a few loads of laundry to earn it."

"I will," he agreed, clutching the treasure to his chest.

I apologized to him on the way home, for not understanding. It's reading, after all, I told him. But someday I want you to try "All Creatures Great and Small --  will you?"

"Sure," he said, but he hadn't really heard me. He was deep into Surviving.

So I put on NPR and listened to stories about financial and ecological and political disaster. Maybe 2012 WILL see the end of the world as we know it. If it does, Benjy will be ready.

Smart Advocacy for Special Needs Children

Because I think many of you, Readers, have some connection to the world of special education, I wanted to repost this wonderful piece by Benjy's truly exceptional educational advocate, Laurel Collins. We've learned a lot from Laurel -- and after you read this, you'll be a little smarter, too! (I found the Cadillac vs. Chevy analogy particularly illuminating.)

Laurel's advocacy website can be found at www. laurelcollins.wordpress.com


As a parent, it is likely you know what your child needs defined in their IEP. What is more difficult is coming up with the program, placement, or related service to deliver that what is contained in that definition. Too often, parents are given “one-size-fits-all” options for programming, never knowing what else is out there. School districts typically have a strand (ie: learning center/learning disabilities, autism, life skills) in mind well before your child’s IEP team convenes. How do you ever know for certain what is available, even within your school district? And, even if you do, how can you as a parent be certain it will meet your child’s unique needs? (The saying, “if you’ve met one child with autism, you have met just one child with autism” comes to mind).

Having entered these murky waters both as a parent and a professional working with other families, I hold two schools of thought which might seem contradictory.
The first is simple. Trust your gut. If something seems wrong (too intensive, perhaps placing your child with students with different needs, or not enough), it probably is worth questioning. However, be reminded of the following. In the context of providing a Free Appropriate Public Education (also known as a FAPE) the district is required to provide the special education services that a child needs in order to make effective progress.

In simpler terms, think of the Cadillac vs. Chevrolet analogy. The law requires that each child receive an education comparable to a “serviceable” Chevrolet, not a high-end Cadillac. What this means in terms of services: You shouldn’t ask the team to provide what’s best for your child (the Cadillac), but rather frame all special education requests in terms of what your child needs (the Chevrolet).

As parents, the second thing we rely on is our “experts”. These are the evaluators we hire and pay for (either through health insurance or privately) to evaluate our kids independent of the school district. If your vision for your child’s services and program are even a little at odds with what your school team recommends, you *have* to have solid evidence and data to back up your requests. Is it fair to place a financial burden on already stressed out families trying to advocate for their children with identified disabilities? No. Do families who can afford to hire people like me, or attorneys, have a better chance of success in negotiating (because, in the end, the IEP process is simply about negotiation) what program and services their kids receive? Absolutely. Are either of the above answers fair? Of course not.

As an educational advocate, much of what I do is educate families about programming and services which could meet the needs of their child. Because advocates tend to be retained based on their work and success in certain districts, we typically know the programs actually available versus the limited programs offered. There are not supposed to be “one-size-fits-all” options for programs or even related services like transportation or Extended School Year, yet there are and most parents don’t know they even had options. Nearly every parent that calls me doesn’t know they have a right to partially reject an IEP using the terminology “the omission of _____”.

As parents, we get tongue-tied and emotional and try to appeal to the humanity of the team members. Sometimes, with the right team, focused on the child, this works. Just as often, it doesn’t. When you try to assert your right to reject something, or ask for something different, you are branded the “difficult mom/dad”. That’s why parents hire advocates. (In actuality, that’s why smart advocates also hire advocates or attorneys when things aren’t working). It is my greatest wish that all school district administrators realize parents do things they think in their hearts are right for their kids, because they have their children’s best interests at the forefront. For every gifted, kind, and human team chairperson I work with, there is an unreasonable or clueless one.

As a mom and an educational advocate, I suggest you trust your gut and trust your experts, weighing both with the valuable opinions of your child’s team. Don’t be afraid to advocate for something different. You are your child’s voice and it is your responsibility to act to protect their ability to access what is reasonable and appropriate. And call an advocate, actually call a few and then call their references, if you get to the point where you need another set of eyes and another voice to join your own.

I do this because I care deeply about kids and because people (two phenomenal advocates) cared about my kids and what they needed long before I did this professionally. They helped me find my voice (which was never quiet, but was often overwhelmed and based only in emotion and not in data).

Here’s hoping parents everywhere get the support they need to be exceptional advocates for their kids. I maintain the above-referenced question is not a fair one to ask a mom or a dad just trying to see their child be effectively educated. We’re parents who love our kids and whose hearts soar when they succeed and break when they fall. We’re not the enemy.

Search Keywords

Here's how people landed at The Striped Nickel this week:

Search Keywords

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how to know if hes older than you think   "x-rated sweet nothings"?? Yikes!

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Commenting on this Blog

Dear Readers,

A faithful follower of this blog reports that she can NEVER leave a comment on it. There seems to be some sort of blogger-glitch afoot.

Would you do me a favor? If you have tried to comment and not had success, would you shoot me an email at anna.delaunay@earthlink.net and let me know?

Now, it may be that my sparkling prose simply does not elicit much reader response. But in case people like the aforementioned Follower are trying and not having any luck, I would like to take it up with the good folks at Blogger Support.

It is always thrilling to hear from blog readers. So please, when you drop by, say hello!

Or the Hellacious Hound will sit up on his throne and SNARL.

Overheard Today, In Our Minivan

Benjy: You know my new favorite animal?

Me: Uh...louse?

Benjy (scornfully): No, Mom. Although those things are pretty interesting.

Me: Buzzard?

Benjy: *thoughtful silence*.

Me: Well?

Benjy: A buzzard is a bird, which is definitely in its favor. But -- no.

Me: I dunno, I give up.

Benjy: The alligator. Don't you just love those guys?

Me (laughing): Definitely not. They'd love to take a bite out of you, however.

Benjy (huffily): Well, I hope you RESPECT them. As animals.

Me: I sure do.

Benjy: You know, I may even look like one. What with my big teeth.

Me: Well, alligators ARE handsome animals. But you are handsomer.

Benjy: *beam*

A Little Backsliding

Today I am taking Benjy to the Higgins Armory Museum in Worcester.

Am I CRAZY or what??

I ask this because Bnejy is not your typical 12-year-old boy, the type who will enjoy seeing weapons ancient and modern, and then go home and make fart jokes and watch Family Guy and eat potato chips and ride his bike. Oh, no.

Benjy is OBSESSED with firearms, and this junket will just fuel the craziness.

The gun obsession started shortly before his first hospitalization, a few years ago. As he became more and more off-kilter he spent more and more of his waking moments thinking about guns. Googling them. Looking at military videos. Drawing them. And then he began rolling and folding and taping white sheets of printer paper into the most beautiful paper replicas. Stunning and accurate, often with working parts. He spent hours watching Youtube videos of slightly bent boys and young men crafting these things, and after a while became so adept at it he no longer needed the tutorials.We became rich in white paper guns, and it was deeply unsettling but also suggestive of intense (if somewhat skewed) creative energy.

It's been a year or two since he's made one of those. But the obsession is alive and well. Now, I don't think that Ben would ever use a gun to hurt a person or animal. Until recently (and by 'recently" I mean the onset of puberty, which is really changing everything) he would weep when hearing about soldiers dead in Afghanistan or Iraq. All he could do was think about their loved ones, bereft and heart-broken here at home. And shoot an animal? No Way. Animals were -- and I hope still are -- cherished beings. I've blogged about Ben's animals obsessions before -- even tarantulas are beautiful to Ben.

But recently a new darkness has emerged. Now, he's always harbored dark thoughts. Thinks the world is full of evil-doers and miscreants. (Often I agree with him, by the way, but I NEVER let him know that.) And those dark thoughts have worried me.

He just spent a few days with his best friend in Connecticut, and twenty-five percent of the time he was deeply dysregulated -- so much so that he was trying to shoot squirrels with a bow and arrow (his friend, according to Ben, has all the luck, all the "cool" equipment, such as a pocket knife and a real bow and arrows. He tells me about this stuff to let me know my failings as a mother. As if I am EVER going to give a kid with a long history of suicidality and self-injury the knives, arrows, and box-cutters he longs for. Jeez.)

Anyway, he and his friend were "hunting" (believe me, I had no idea till I got there to pick him up) and his first words to me when I arrived were:

"We ALMOST got a squirrel."

"Huh?" I said, blinking.

"With the bow and arrow."

When this registered I told him that our family does not believe in killing animals for sport, and that as an underage member of said family he is not allowed to try to do so.

"It's for FOOD, Braniac." (Ben gets rude and rebellious sometimes when dysregulated.)

"Oh? and who's going to skin and clean and cook it?"

"I am."

Please note that this is the child who will not even eat chicken unless it is prepared by someone in a fast food uniform.

"And what will you do if you shoot it and it doesn't immediately die? Let it bleed to death or strangle it to put it out of its misery?"

Then the anger surfaced. "I HATE squirrels. They should ALL DIE. They eat bird seed out of bird feeders and I AM A BIRD LOVER. So who cares if I shoot one of them?"

Please note that our last conversation about squirrels centered on their cuteness and fluffiness and chubbiness and was conducted in a cute-animal-squeaky-voice. Like, don't you just WANT ONE FOR YOUR VERY OWN?

And it wasn't just squirrel murder that was on his off-kilter mind. He decided he hates cops, especially female ones, because apparently they are ALWAYS OUT TO GET YOU. Beware the lady cops -- they are cold-blooded killers. And he also decided that if you break a law -- a not-so-important one, possible like thou shalt not steal packs of gum from the convenience store, or something like that -- a simple apology should be enough, no police involvement necessary. And why the hell are there laws and rules ANYWAY?

Readers, this is scary stuff, because my child lacks the basic judgment of a typical twelve year old. Not that any twelve-year-old-boy is particularly reasonable, what with all those hormones kicking in. But mine has no common sense, no rationality, no cool head in a hot situation. I can just see him telling a cop, "Look, dude, you're the one who's wrong. There shouldn't BE rules about not stealing gum from convenience stores because there should NOT BE MONEY and EVERYTHING SHOULD JUST BE AVAILABLE FOR EVERYONE, WHENEVER THEY WANT IT. AND WHO MADE THESE STUPID RULES UP ANYWAY?

Then I can see him being booked at the station and sent away to juvvy and living a life of terrible fear and loneliness and sadness and deprivation, and then I will want to die.

So why am I taking him to the Armory Museum? I guess to ease his loneliness and sadness, and give him something interesting to do on a hot, empty Friday.

Oh my God. Wish me luck.

Cool Beans, Saskia!

So, you might have figured out by now that I love opera. I know, just more evidence of my nerdiness. But boy, there is nothing like being immersed in Mozart or Offenbach or Handel for three hours...the music, the drama, the artistry, the costumes and sets.

When I was pregnant with Saskia I listened exclusively to classical music CDs -- instrumental music and opera -- at home and in the car, and I listened A LOT. (These days I listen mostly to NPR in the car -- I don't know why the change.) Then when she was born, the same -- lots of opera, and lots of Mendelssohn and and Bruch, as I recall. So she got an earful of it.

Two of my favorite Saskia stories are these:

1) When Saskia was three or so she used to DEMAND Mozart's (amazing) Don Giovanni EVERY TIME we got into the car. I happily obliged, because listening to Mozart is like reading Shakespeare or Dickens: you can do it over and over and notice something new each time. You keep being surprised and amazed, and somehow it always seems fresh. So, OK -- I indulged her.

One day, though, I had this rogue thought. Maybe, because I'm just a tad tired of Don Giovanni, I will sneak in The Marriage of Figaro. She is three, and she will never know the difference.

So I popped in Figaro, making sure NOT to start with the overture, because I figured she would recognize THAT as non-Don Giovanni. I think I started with "Porgi Amor" at the beginning of Act II.

And you know what? within two or three measures, an indignant Saskia cried, "THAT IS NOT DON GIOVANNI!"

Well. The funny thing is, there is nothing remotely like "Porgi Amor," the Countess's melancholy aria, in Don Giovanni. Because Figaro and DG are quite different, as it turns out. That kid was spot on, and I hastily ejected Figaro and popped in Don Giovanni.

2) Around the same time my parents took us to visit friends, accomplished musicians, in Saratoga Springs. They are the owners of a music performance venue, Alsop Hall, and they are the parents of the distinguished conductor Marin Alsop. Mr. Alsop invited me to take Saskia around the very cool house. On one wall was an enormous picture of Marin, conducting. Saskia stopped and stared at the picture, and I said, "That's Mr. Alsop's daughter. Her name is Marin."

Saskia looked a while longer, and then turned to me and said coolly, "That's a nice name. But I like Figaro better."

Obviously, this kid was born to be an opera singer. When she was in second grade  and could carry a tune about 60% of the time, I convinced her it would be awesomely cool to join Boston Children's Opera (no longer operating, unfortunately). She agreed, and for the next three or so years performed in operas written for and performed by children. The directors of the program were singers, and wrote the operas.

Saskia was pretty darn good.

But then something happened. She became a tween. And she decided opera and all classical music was for the birds. She practically DIED of embarrassment if a friend of hers was in the car and I put on the classical station.

"Mom!!"

Fast forward to thirteen point five. She was singing ALL THE TIME, with this amazing coloratura soprano voice, vibrato and all, and I when I asked her if she'd like voice lessons she screamed "YES!!!"

And now, after a year of voice lessons she sounds almost like a professional classical singer. More amazingly -- hold onto your hats! -- she wants to be an opera singer. She's singing Italian and German arias, and she BLOWS ME AWAY.

A couple of weeks ago, she auditioned for the Pre-College Academy run for serious high school musicians by one the the conservatories in Boston, and she wowed them.

They accepted her and she will start in September. Every Saturday for four or five hours she will go into Boston and study theory and voice. And she, and Lars, and I, are so damn excited.

We're hoping hoping hoping financial aid comes through (if not us, then who??). If not she will have to use her remaining bat mitzvah money to pay for a chunk of it. And as for the next three years, we'll have to cross our fingers and wait and see.

Cool beans, Saskia. We're proud of you!

Me and Saskia

We're going to watch this over the weekend:

A luminous, gorgeous, and chilling version of Don Giovanni. Makes me shiver.

A Lesson In Housewifery

Last night I got to see Lars in an apron. It wasn't the first time. I doubt it will be the last. For some reason, on the rare occasions on which he cooks, he likes to protect his clothing. Yes, that same holey, worn-for-a-week clothing he digs out of the trash when I try to dispose of it, screaming, "Gardening clothes!!"

Go figure.

You might wonder why Lars was cooking last night. I will tell you why. A week ago I cracked a rib or two. The same ribs I cracked two years ago. And the year before that.** And let me just say: cracked ribs HURT. Every time you draw a breath it feels like someone has inserted a knife between your ribs and given it a spiteful turn. Lying down in bed is a nightmare, exceeded in awfulness only by getting back up.

So I'm slogging and snoozing through my days on a perpetual Vicodin high, and Lars has had to take over MY job while more or less neglecting his. Last night he had to step in and cook a meal for a local fmaily who recently lost a son. Under my instruction he bought a rotisserie chicken and made some lovely mashed potatoes and gingery honey carrots, (Actually, he really did it all on his own while I watched CNN and slept. I abdicated my repsonsibility for this venture after the shopping list stage.)

Other things Lars did yesterday: Shopped, drove kids places, walked dog. Things Lars did not do yesterday: any sort of cleaning up after himself or paying of bills.

Oh well, you can't have it all.

I said to him over OUR dinner of rotisserie chicken, lovely mashed potatoes, and gingery honey carrots, "Welcome to my world, Lars."

And he said, "Can I go back to work tomorrow?"

** Why do I keep cracking my ribs? Good question! Probably because I had my ovaries out in 2000 (thank you, BRCA1!) and have developed mild osteopenia, a precursor to osteoporosis. This, in spite of the Evista and calcium supplements I take every day (the latter of which are now apparently going to give me as heart attack, according to what I read). The first two fractures came from a vicious cough; the current from a fall while woozy on a new medication. I wonder what will cause the next ones?

To Work or Not to Work -- That is the Question

Cheap reference to Hamlet aside, I am pondering if, how, and when to go back to work.

I NEED to work, because we are bleeding to death here. Our overdraft can only take so much abuse.

I may or may not WANT to work. I mean, when I work I have two full-time jobs. At least. And that is simply No Fun. I LIKE that when I'm not working, our house is bordering on clean at least half the time. I like that there is time for cooking REAL food (when we can afford it -- sometimes it's a box of spaghetti. Although I'm back on the low-carb bandwagon so I will have to find a way to make chicken for the price of spaghetti. Any tips, people?).

I do find that I accomplish fewer important things -- i.e. writing -- when I am not working. I know it's counter intuitive, but the less time I have the more writing I get done. These days I'm throwing in a load of laundry here, watching an episode of House Hunters there, and all of a sudden it's dinner time. After dinner I don't write, although when I'm employed I often write from 10 p.m. till midnight.

The unemployed Anna hauls her butt to bed by 10.

So, I have a few applications out, but I have a sinking feeling about them. I mean, this is a HORRIBLE job market. And I want to do stuff for which I am more than qualified but which I have not really done before. That is, I've DONE it, but not under that job title. And I am sure there are plenty of folks lining up for the job of Chief Widget-Maker who've been Chief Widget-Makers in the past.

I think in a year's time I will still be Googling for "$5 Low-Carb Meals" and making my own laundry detergent.

The real headline here is: BENJY IS DOING WELL ENOUGH THAT HIS MOTHER CAN CONSIDER WORKING. If nothing else ever comes my way I will be grateful for that.

While I wait and see if I am fated to work, I'll write. My agent and I have decided it's time to overhaul my novel, so I will devote myself to that endeavor, in the hopes that the damn thing will finally sell and bring in that twelve cents an hour the advance will be worth, after five years of working on it for nothing.

At least I won't be frittering away my time doing laundry and watching House Hunters. I hope not, anyway. ;)

This is lovely. Just lovely.

The Pink Tutu Project

Owning a Disability

Wow, it's been two weeks since I blogged. Mea culpa. I got lazy, I guess -- or uninspired. Hope my American readers all had a great Memorial Day weekend!

I've been thinking a lot about the ways in which disability can form a person's identity, in either a positive or negative way (i.e. THIS is who I am, or this is who I do NOT want to be). Benjy is such an admirable person for the way he owns his disabilities.

"Oh, I have Asperger's," he'll say, either in explanation  of some oddity about himself or just to convey who he thinks he is. He has said this to adults and kids alike. I've heard him talk about his anxiety and depression, too. There is no shame or self-loathing there. He owns his disabilities, knows they are a part of the amalgam of things that make Benjy Benjy, and therefore to be accepted, if not embraced.

I love that about him. He is much more at ease with himself than I was with myself, until fairly recently.

Because I have a disability too, and it has taken me a long time to be able to talk about it, even though it is a fairly obvious one.

I have Tourette's Syndrome, which has awkward symptoms, to put it mildly. Even medicated I sometimes tic, so it's not like people don't notice something's up.

For years, I couldn't acknowledge this issue to anyone but myself or my family. If some cruel person made fun of me, or accused me of "talking to myself," I would not say, "I have a disability, and it's called Tourette's, and it causes me to have vocal and motor tics." No way. I didn't even KNOW it was a disability, let alone admit as much. I just knew I did these weird things, and they were called tics, and I went to see a doctor in New York City once a month, and this doctor put me on The Worst Medication In The World, AKA Haldol, and it turned me into a fat zombie with slurred speech but I still could not own this thing that I had.

I remember as a graduate student sitting in the manuscripts collection of the British Library, looking delightedly at some 19th-century plays and theatre memorabilia for my dissertation. I was in heaven, English nerd that I was. And this horrible woman was sitting at the next table, looking at some medieval illuminated mansucripts that were WAY too good for her, and she kept angrily shushing me -- I guess I was making soft noises, because I was not at all aware of it and usually I am -- and glaring at me. If looks could kill I'd have died some horrible medieval death, on the spot.

I sat there, flushed with humiliation. I could not look her in the eye. I felt like a worm. Finally, when the shame of her abuse became greater than the shame of admitting my disability, I hissed, I have Tourette's Syndrome. I can't HELP it! And you know what she did? She waved me away with her hand like I was a gnat or something. Just dismissed me. So I went to the bathroom and cried for about ten minutes. When I got back to my table she was gone, but I didn't have the heart to sit there and continue my research. She had spoiled everything.

These days I have let go of my self-loathing. Like my boy, I know that my disability is simply a part of me. I have lots of friends who see it that way, and have had two husbands who were/are NOT EMBARRASSED TO BE ASSOCIATED WITH ME. Imagine that.

The reason I'm thinking about my Tourette's today is because I have gone off my medication, which put forty pounds on me over the past twelve years (still, it's better than the DREADED HALDOL), so I can try a new one. I am hoping this new one will ease my tics, not destroy me with side-effects, and allow me to return to my normal weight. I await its delivery at my door today with trepidation and a large dollop of hopefulness. In the meantime, two days off the Risperdal, the tics are waxing something fierce. I do not like it -- it's very uncomfortable, physically as well as socially -- but if I can get my old body back it will be worth a week of heightened ticciness.

I'll take Ben as my inspiration for how to live gracefully as the person I am.

R.I.P. Zoidberg

Over the weekend, while we enjoyed ourselves in sunny, lovely Connecticut (at the home of my sunny, lovely BFF Anke), one of the rockin' hermit crabs died.

I think his name was Zoidberg, but it might have been Goat.

This makes me sad. Especially because Benjy had forgotten to check their water dish before we left, even with prodding, and I found Zoidberg/Goat on top of the hermies' little drinking sponge, which was dry as a bone in a dry water dish.

Now, the other three hermies were fine, so I have to believe that Zoidberg/Goat was going to die anyway. But still, the thought of him searching for water, parched and possibly dying (well, certainly dying) makes me want to cry.

And here's the sad truth: Benjy loves animals more than anything on this earth, but he is not a good pet owner. If I didn't remind him to feed his fish and feed/water the rockin' hermies, they'd all have died a year ago. If I didn't drag him off the computer to clean the fish tank those little guys would be swimming in a murky stew.

And yet, he wants ever more animals. This drives me crazy.

But you know what? I was not so different. I loved animals beyond measure when I was eight, nine, ten, thirteen. We had a family cat, and I had a number of small rodents. I had a hermit crab, too. The hermie died quite quickly, but I don't remember ever receiving instructions for care. He probably either suffocated because we had no salt water in his tank, or died of loneliness because he was singleton and like most of us they need company.

My biggest animal (in every sense) was my horse, Stardust. She was my best friend in those lonely years, but if you think I mucked out her stall frequently enough you're quite mistaken. And there was the time I forgot to tell my father to buy more sweet feed and I got to the barn to feed her but there was no food. I gave her some extra flakes of hay and went home and wept. She got a disease colloquially known as mud fever as a result of my shoddy stall-mucking skills, and she got a fungus -- God knows why -- and lost half the hair on her body. These memories are excruciating to me. I let Star down, big time. I was not ready to be a horse owner at the age of thirteen, fourteen, and my parents were not interested in horse care, nor did they know anything about it.

I was like Benjy: in love with animals but not responsible enough to own any. I have such terrible remorse about my animal failures. There are more stories about Stardust to tell, some wonderful and some very sad. If I have the courage maybe I'll tell them to you sometime. If there are points to be awarded for love and affection then I should get a million of those. But I'd lose at least half of them for my benign neglect.

At least the weekend's death was on a small scale. I hope Benjy has learned a lesson about water bowls and small sponges and the value of even the littlest of lives.

Disability and Work, Revisited

It's a long time since I wrote a post on Disability and Work. At the time, our family, our son, was struggling with severe mental illness. He wanted to die. He hurt himself sometimes. He could not be left alone, or even out of my sight. Work had become untenable; I was canceling classes and office hours right and left. I was distracted as hell. My child wanted to die, and I just didn't care about a bunch of Freshman English essays.

So I left work and we went from pinched to officially broke. Planning every expenditure down to the penny. Saying no to the kids. A LOT. Buying only used clothes and very little else, besides food. And buying that at places like Aldi. That part of it has not been fun.

But it's been great only having one full-time job. Because before I was doing at least two. Maybe two and a half.

And now, things are changing again. Because Benjy is so much better. Unbelievably so. (Well, he did have a breakdown last week as a result of an unpleasant encounter with another kid at the Joy School. But that was the first in months. And he recovered pretty quickly.) And we are afraid if I continue working just one full-time job, an unpaid one, we will never be able to retire. We are beginning to imagine Lars hobbling to work with a walker. And it's kind of funny but mostly sad.

So as of tomorrow I am throwing my hat back in the ring. I'm applying for college administrator positions (I think I'm finished with teaching).

We've had to really think this through. Because if I go to work it will mean that Benjy has to take the SPED van to and from school, instead of driving with me, and he'll need to let himself in the house after school and hang out until Saskia gets home. This scares me a little. But on the other hand he's twelve now, and in sixth grade. If not now, when?

Of course, I'm counting my chickens. I don't have a job yet, and it may take a very long time to find one. But I'm looking forward to having a couple hundred dollars to put in our empty savings account each month. And being able to replace our roof when it decides to implode on us (this will probably happen soon). And being able to pay off the thousand dollar car repair expense we just incurred.

I don't know what the future holds, and whether, if I get a job, I"ll be able to keep it. We take things one day at a time here in the Delaunay household. But I'm starting to develop a slightly longer perspective. Like maybe looking out a month at a time.

I'm doing that right now, and the month of May looks like it's going to be fair and warm.

What We Have Take II

I've had a challenge from my wise and wonderful reader "Papa" (which I'm guessing is what his lucky grandchildren call him) to make a list of positive things we have around here, which is as long as my previous list of 19 crappy things.

Papa, you're on!

We have:

Cuteness (especially on the junior varsity level)
Creativity
Intelligence
Compassion
Some culinary abilities
A knockout voice (only one of us, sadly)
Killer paper-gunmaking abilities (only one of us, but the other one)
Decent interior decorating skills (yet a different one of us)
Technological prowess (some of us)
Musicality
Warmth
Excellent trampoline maneuvers
Awesome writing skills
Awesome translation skills
Some great art on our walls
Three beautiful hydrangea blossoms sitting on the coffee table in front of me (okay, okay, I'm stretching)
"Impeccable taste in literature" (quoting Dad, circa 1982. This compliment was actually a back-handed insult of my Top 40 musical taste)
Enough love to go around and then some
The most adorable canine felon in town -- he's really, really cute, despite being a worse dog even than Marley, who was reputedly pretty bad

Papa, are you satisfied? :)

What We Have

Recently I read a very good memoir by a former colleague, Amy Boesky, called What We Have. It's about her family's struggle with breast and ovarian cancer -- lots of these folks had one or both, and some, like Amy, took steps against getting them (read: prophylactic surgeries).

Amy and I have a lot in common. And the title of her book makes me think about what WE have.

We, readers, are the POSTER FAMILY for disability and illness. I feel like I should get a book contract simply for being who I am. (I guess I'd have to write the book at some point, but still). We should be the stars of a Lifetime movie ("A family ravaged by disease and death, but bound by love." Ugh).

So, are you ready? Here's what our families (Anna's and Lars's) have, all mushed together and in no particular order:

Breast Cancer -- on Anna's side brought to you by the letters "BRCA" and the number "1" (the dreaded BRCA1 gene mutation); on Lars's by age and menopause and who the hell knows what else.
Prostate Cancer (again, courtesy of that incorrigible gene)
Autism/Asperger's
Sensory Processing disorder
Asthma
Tourette's Syndrome
OCD
High Cholesterol
High Blood Pressure
Anxiety Disorder
Depression
Panic Disorder and Agoraphobia
Uh...what else? Oh yeah, dementia, possibly of the Alzheimer's variety
Polycethemia Vera (rare cancer of the blood)
Acute Pleva (that skin disease I warned you not to google in a previous post)
Possible Lupus (okay, we can't take credit for that one yet)
Too much smoking (is this a disease? maybe not but it might become one)
Possibly some tippling
Generalized weirdness and chronic studentitis (if you guessed that one's on Lars's side you'd be right)

I know there's some more stuff but I can't think of it right now.

In the spirit of full honesty, I'd like to inform you that a slight majority of these ailments come from my side -- at least, the traceable ones. The mental health issues are more nebulous, but I think they come more from the Teutonic half than the Jewish half. Lars might disagree with me there.

All four of us in the nuclear Delaunay family have things gone wrong with us. And so do our extended families. Dr. Boesky, we put you guys to SHAME.

What I like to think about us is that we're INTERESTING. We're not your average vanilla family. We've got stuff going ON. And I've got an endless supply of fodder for my writing.

Cool, right?

Writing Dilemma

As a fiction writer, I have the infinite pleasure of dreaming up stories. Anything goes with fiction. But what about memoir?

A year ago I started writing personal essays. It all began when Benjy was seriously in decline, and the writing was more therapeutic than anything. But after six months I ended up with an amazing piece, so I changed all the names (to the ones you see on this blog) and sent it off. I decided to eschew my usual publishing haunts (literary journals) and try for a glossy magazine. I chose O Magazine and the editor there loved it, but alas, they do not publish much in the way of parenting pieces, so they passed.

So I decided to send it to The Sun, a gorgeous, New Yorker-esque literary magazine where it now awaits a decision. In the meantime, I wrote an essay about my relationship with my deceased sister, and a short (800-word) essay about parenting Benjy -- an up-beat one, but it does refer to his mental health issues and my concerns about his functioning in later life. This time I used his real name.

My dilemma, which is any personal essay writer's dilemma, is how do I deal with the fallout when I reveal things about others that could be hurtful, now or later? That was the reason I decided to blog pseudonymously, and to change all the names in my long essay about parenting a child who wants to die (although I have not changed my own name in that one). All of the essays I've written in the past year reveal things about me AND the other person that that person might not like -- all true things, but still.

In Benjy's case, he knows I write about him but he has never read anything I've written. He owns his Asperger's and his mental health issues -- he is not ashamed of them,  and he himself sometimes brings them up with others, even other kids.

But what if he reads one of my essays in print when he's sixteen, seventeen, and doesn't like what he sees? Do I have the right to publish this stuff, to think about myself -- for once! -- and consult my own desires? Because this is stuff I want to write, and I think people would want to read. Lots of people struggle with one thing or another -- most of us do -- and reading how someone else has dealt with their challenges helps us. I know it helps me.

What I do know is that I'm going to keep writing memoir. I love it, and I think I have something of value to contribute. The question for me is, do I change the names of others -- and if so, do I have to write under a pseudonym, or is changing their names enough? I don't want to hurt Ben, or anyone I love (or even just like), so I'll have to figure this out.

And that's what I'm working on this morning with my cup of coffee and a warm hound by my side.

Six Months...

Six months ago tomorrow, I started this blog. October 21, 2011. It was a week, maybe two, after Benjy entered an inpatient psychiatric unit, because his hankering for death had become so strong I no longer felt I could keep him safe on my own. That was a dark, dark time.

Benjy has flirted with suicide, off and on, for a long time. He has had periods, brief and extended, of dysregulation so severe they have thrown our entire household into despair. His disability has challenged my parenting abilities, disrupted my equanimity -- what little I had -- again and again. How do you parent a child who is so frightened of vomiting he literally shakes every time he gets a stomach ache? Who is convinced the word will end, very soon, and we will all be plunged into icy darkness? Who believes said world is filled with miscreants and evil-doers, and that none of us are safe -- no matter how many times you tell him about the doctors and teachers and social workers, and so on, who strive every day to make our world better?

How do you parent a child who does not smile, or laugh, for months on end? Whose despair curls him up in a fetal position on his bed, when he ought to be out riding his bike or shooting hoops? Who cries out in his agony of loneliness, I'm lonely! Help me to not be lonely! and you know there are no kids who would want to be with him, so you can't help him?

Readers, it's hard. It's a heart-rending business, this Asperger's-anxiety-depression-suicidality. Parenting Benjy -- if it all works out -- will be my great work, my magnum opus, the one real achievement in my life. Sure, I've completed a PhD, published in some good places. But those pale in comparison to guiding Ben through life and keeping him safe. I think I've done a decent job of it so far -- and I know my limits, will call in the reinforcements when I need to -- and I hope that will continue.

But here's the beautiful thing: our lives, Ben's and Lars's and Saskia's and mine, have gotten so much better! Maybe it's being on the right meds. I know FOR SURE that being at the right school helps a lot. And finding -- finally! -- some good friends, not many but a few, which is enough. These things have bred optimism in my boy.   He smiles now, laughs, is sometimes silly. How happy that makes the rest of us!

A lot has happened in the six months since I started this blog. We hit rock bottom and began our ascent. I stopped working and opened my life up to a measure of peace. We got more information about Saskia's illness -- not enough, but more -- and she had her ups and downs. Wow. What's in store for the next six months?

I don't know, but I've got some stuff to look forward to. I've got a whole bunch of essays and stories out on submission; I suspect there will be good news and bad on those. We have Saskia's voice recital coming up, and I love hearing her sing -- she's a lyric soprano, has a gorgeous classical voice. If she becomes an opera singer someday, which is what she thinks she would like, I will not be remotely surprised. That kid has talent! Things will continue to go swimmingly between Lars and me, of that I am sure. More late-night walks with the Hellacious Hound to look forward to -- I love those!

And then there's Ben. I hope he will continue to get stronger and happier, and fill our lives with his own special radiance. And lots of arcane knowledge, which is his specialty.

Readers, what's changed for you in the past six months, and what are your coming delights?

Contact me!

Hi all,

I just realized it would be a good idea to have an email address connected to this blog. (I'm not always the brightest star in the galaxy...).  So, should you want to contact me regarding the blog OR JUST TO SAY HELLO, here it is:

anna.delaunay@earthlink.net

I also futzed around with the layout of the blog, adding a "follow by email" button and a "favorite posts" button. (Blogger is TRES COOL!)

The email address, if you forget it, is in the profile on the right side.

I hope to hear from you!

Addendum to Last Post

I left something out of the last post.

LARS IS STILL A HOTTIE.

I like living with a dorky hobo! Just in case someone misunderstood me. ;)

Sartorial Deficiencies (Or, Living With a Hobo)

Last night, Lars and I went before our town's Transportation Management Committee and pleaded for a guardrail to be erected  along our property line. We live on the corner of two rather busy streets, and our house is set into a sort of bowl, below street level. Over the past six years, three cars have hurled themselves down our declivity at night, and two of them have smashed into our house.

Yikes.

So, I prepared a presentation, including narratives from police reports and a cool map of the property complete with colored lines representing the trajectories of the three cars (courtesy of Lars). I put on a semi-respectable outfit (read: black jeans, shell, jacket, none of which were rumpled) and a little makeup. I made sure my fingernails were clean.

I may not achieve the perfection of Saskia (not even close) but I am not a TOTAL slob. Only a little slobby.

Well, we're sitting there listening to an ENDLESS presentation by some crunchy bike folks who want biking lanes on the roads, and listening to the HIGHLY ANNOYING guy to Lars's right go on ad nauseum about how his wife will NOT TOLERATE white lines on "her" street (I know, you couldn't make this stuff up) and then it's our turn.

Lars had asked to play a role in this affair so I allowed him to hand out his little maps. and that's when I saw the hole in the arm of his green and blue striped rugby shirt. Right near the elbow. A large, round hole.

My heart sank. I looked a little closer and noticed that the whole shirt looked kind of dingy. Like it maybe hadn't been washed since four of five wearings ago. And then I tried to remember him leaving the house this week in another shirt and I couldn't. HE HAD BEEN WEARING THIS DINGY, HOLEY SHIRT TO WORK FOR AT LEAST A WEEK.

I thought I was going to die.

"You have a HOLE in your shirt!" I hissed.

"Yeah?" he said, grinning.

"You look like a hobo!"

"Hee hee," he replied.

As if that embarrassment wasn't enough, I noticed he had two sets of reading glasses in use (or disuse). One perched on the top of his head, the other hanging from the neck of his shirt.

"Do you REALLY need two pairs of glasses?" I snapped.

He looked at me with raised eyebrows.

"These are two different strengths," he said, sounding hurt.

I am married to the world's dorkiest hobo. I miss the days when he only wore black turtlenecks and was this blond, European hottie in black turtleneck and blue jeans. It was a lot of black but you can't see dirt on it, at any rate.

Fortunately the Traffic Committee did not hold Lars's sartorial deficiencies against us. We got the guardrail we asked for.

But here's the scariest thing of all. This morning when I noticed Lars was wearing the green and blue rugby shirt again, and that his pants looked a bit ripe as well, I sternly sent him upstairs to change.

And Benjy, who was sitting at the table eating his waffles, said, "I'm on your side, Dad! Who CARES about that stuff, anyway?

Oh joy, now there are two of them.

6 Reasons Why You Need an Advocate

If you've got a kid on the autism spectrum, here are six reasons why you need an advocate:

1. She knows special education law a lot better than you do (probably).
2. She knows how to talk about your kid's needs in a way that makes your TEAM sit up and listen.
3. She's not going to burst into tears during an IEP meeting, the way you might (okay, I'm talking about myself here).
4. She'll calm you down when you are freaking out about the way your TEAM chair pronounced the words "out of district."
5. She knows about programs YOU want to know about.
6. If she's worth her salt she'll mean the difference between optimal services/placement and insufficient ones.

Of course, you may be willing and able to do it on your own. I'm not. Our advocate is a keeper -- you can find her here.

How I'm Whiling Away the Hours

Watching this clip that combines a favorite aria ("Saper Bramate" -- the mandolin serenade from Paisiello's "Il Barbiere di Siviglia") and still clips from an all-time favorite movie -- Kubrick's(via Thackeray) "Barry Lyndon."

I love this stuff! Barry Lyndon is a gorgeous musical and painterly excursion, as well as a great story. And Paisiello's barber of Seville, which predates Rossini by a hundred years or so, is lovely.

Listen, watch, and be amazed.

Trying to Figure Things Out

Have you ever spent a few hours simply trying to figure things out? Things like, what you are going to cook for dinner this week or when (if ever) and where your next vacation will be or how to get your kid more birthday invitations? Have you ever struggled to understand your teenager or your socially impaired child? An illness? A badly behaved pooch?

I spend a lot of time trying to figure out our lives. Like last night, lying sleepless in bed worrying about money. And after I was finished worrying about money, fretting about losing weight. And when I finished there, cogitating about the expensive place town we live in, and what would happen in terms of Benjy's school placement and Saskia's social life, if we were to live somewhere else. And then the horrid, horrid ear worm set in. (Dare I say it? the sound track to --aargh! -- Titanic, which I had the misfortune of hearing yesterday while sitting with Saskia, waiting for the Hunger Games to start.)

By the time I got to sleep last night it was, oh, 3 a.m. or so. And then I had bad dreams about -- well, never mind.

I still have not sorted things out. (Anyone have any thoughts on how to stretch $47 for a week? If so let me know.) But my optimism is irrepressible, which is why I keep going through the exercise of figuring things out. Someday it's going to work.

In the meantime, Benjy has a looong get-together with a friend today, and my bestie, Anke, is coming from Connecticut to hang with me. She, Saskia and I will have a girl's day out on Newbury Street while the rest of the world -- well, the Christians in the world -- eats ham and potatoes and whatever else you eat on Easter.

We're hoping Starbucks will be open. Not that I'll be drinking. Not on $47 that's got to last till Friday. But I'll be having a blast, and so will Benjy and Saskia, which you can do on $0.00 per day. I don't know what Lars will be up to, but if I had to guess I'd say jogging and then snoozing.

Happy Passover and Easter, peeps!

Weird Googling

People come this way via the weirdest Google searches. This week a person looking for "Asperger cross dressing pantyhose" dropped by. Oh, okay. Really? And a person -- plagiarizing high school student is my guess -- looking for "A small paragraph about nothing ventured nothing gained" landed here.


Two people -- TWO -- were hoping to find out more about these:

(Codpieces -- yes, slightly x-rated, except when I write about them)

Then there was the person who Googled "Dog lying on sofa." No wonder he or she landed here -- I have the original dog-on-sofa. He lives on the one with the most pillows.

Sometimes -- and this is cool -- all the folks who drop by on a given week come here by design: they've Googled some variation of The Striped Nickel. (Last week someone searched for "The Spotted Nickel." Fortunately they found me. Whew -- close call!)

I love that you, Readers, are coming here and coming back. Even my recent droughts haven't deterred you. In a little over five months I've had more than 8,000 hits on this site, including, of course, a few "vanity hits," and a large handful by grandma and grandpa. That is SO cool. I would tell Benjy about it but he might think he's famous. I wouldn't want to deal with a kid who's too important for his morning oatmeal.

I would tell Saskia but she'd just roll her eyes. And if she found out I was writing about her she'd KILL me. So I'll just have to enjoy the fact on my own. Or maybe I'll tell Lars. I'm still waiting for him to forgive me for naming him "Lars" -- not that his own Teutonic name is any less Euro. Just slightly more southerly.

I'm sorry, I couldn't turn off the cute

Check out THIS baby (it's a pygmy hippo):

I think I yoinked this pic from Yahoo News. If they yell at me I will have to take it down, so enjoy it while ye may.

Holy Hellacious Hound, Batman!

I thought we could all use a dose of cute tonight. Enjoy!

I Don't Know How She Does It

Did you ever read that book, I Don't Know How She Does It? It's a fun read, all about a working mom competing (in her mind) against the "mothers superior" (read: stay-at-home moms) and feeling like she'll never hold it together. Of course, she does, and with aplomb (and a large measure of stress and disarray).

Well, I felt rather like Kate Reddy, the heroine of that book, when I was working full time and parenting two children, one disabled -- although I'm not sure I did anything with aplomb. I kept us all fed and clothed (more or less -- not counting the holes), and kept Benjy alive. I guess that's saying something.

Now I am not working and I feel, if possible, even more like I can't hold it together. I didn't feel that way at first. But now that Saskia's illness, whatever it is, is waxing, now that we are seeing "ologists" every week, and she continues to feel exhausted and full of malaise, grow new lesions, lose hair, look ghastly white, AND SO ON, I am beginning to think I'm going to lose it.

I would give my left arm -- and I'm left-handed -- to be one of those prosperous, healthy families we seem to be surrounded by. I'd be willing to forgo prosperous. Just make us healthy, please.

So here I am, losing it. Actually, not so much. Instead of losing I am gaining. What consoles me is food, preferably of the carby variety. So I'm eating myself silly. Why oh why couldn't I be one of those gals who STOPS eating under stress? Just lucky, I guess.

Good thing I am too tired lazy to go shopping to replenish our stores; all I had in the house this morning was kale. So I will shortly be consuming some AWESOME homemade kale chips. (I really do mean awesome. Kale chips are yummy AND good for you.)

Next on today's agenda is a meeting with Saskia's teachers, to plead with them that they reduce Saskia's homework. she comes home from six hours of school to face four to six hours of homework on a regular basis. This must violate some child labor law, don't you think?

Anyway, that's my rant for today. I promise to return to the old upbeat programming as soon as possible. So stay tuned!