Monday, February 27, 2012


Words overheard in the Delaunay household tonight:


These were not part of a conversation between the over-educated parental units who reside here. Nuh-uh, dude. In fact, Lars and I would only have known the meaning of one of those words if the tween who lives here hadn't enlightened us.

It maddens me that the jury is out on our boy's future. He is so damn smart he takes my breath away. But he can barely dress himself. He can't manage to do anything that has expectations attached to it. He is addicted --addicted! -- to his computer. I loved listening to him play his violin as much as I love hearing him talk about bird-hipped and lizard-hipped dinosaurs. But I will probably never hear him play again, because my admiration, and his teacher's, made him crumple.

Benjy's either going to live a gorgeous, astonishing life -- write a brilliant book on paleontology, discover a new dinosaur fossil, win a Nobel Prize -- or he's going to be with us until we die, collecting disability payments, gaming, collecting more and more knowledge about the world which he will never put to use.

It's possible he'll do something in-between. Get a job in the fish department at Petco. Breed fennec foxes in the backyard. Maybe he'll even be a husband and a dad -- which is far from in-between. I bet he'll be a great husband and dad. Just not a well-dressed one.

What I know for sure is that, whatever he does, he will always dazzle me.

Friday, February 24, 2012


As a scholar of the nineteenth century, and a reader who has spent loads of time in earlier centuries as well, I've often imagined life -- my life, the lives of my family and friends -- at a different time.

When I was twelve years old and reading Dickens, I thought I'd been born too late. Too late to marry him, that is. Or better yet, his fictional self, David Copperfield. (I did not know then what I later learned about Dickens -- I would not have been his wife for a million bucks. David? Yeah, of course. He's pretty nice and pretty hot, except when he's trying out being a dandy, walking around in a corset and tiny boots. Don't ask.)

Anyway, I remember telling my dad that I'd been born too late, and he set me straight. "You would not want to have diabetes, or cancer, or a bad back, in 1840," he said. These days I would add to that, "You would not want to have a baby then, either."

Just think of it: if you'd had what was thought to be breast cancer, before about 1846, you'd have a choice: a mastectomy without anesthesia (the author Fanny Burney made this choice in the 18th century) or death. Great options, right?

If you had a mental health disorder -- and sometimes even if you didn't, especially if you were female -- you could end up in a "lunatic asylum." Look at the last plate in William Hogarth's series "A Rake's Progress" and you'll get a sense of what that was like in the 18th century.

Not only were conditions barbaric but the public could pay a couple of shillings on a Sunday afternoon and gawk at the crazies (see those well-dressed ladies all lit up, with the fans?). All in a day's entertainment, folks.

Imagine if your child had autism. Or Tourette's syndrome. I can just imagine what would have happened to the person with the tics in Salem in the 17th century -- can't you? Imagine if you slipped a disc, but you were a farmer and had to labor in the fields if your family was going to eat. Have you ever felt the pain of a ruptured disc? I have, and I feel damn lucky to live in the age of Vicodin and Percocet, not to mention general anesthesia.

If I had lived in the nineteenth century and been  married to Dickens, there would be a good chance I'd die of "child bed fever" (puerperal fever) after giving birth to one of his innumerable children (actually, there might only have been one! Catherine Dickens got lucky). That's because middle-class women began having their babies in hospitals instead of at home in the mid-Victorian era -- but too bad for them, because doctors did not know they had to WASH THEIR HANDS after leaving morgue for the maternity ward. Germ theory wouldn't fully be in place until later in the century.

So don't you feel lucky to live when you do? For all its crappiness, the twenty-first century is a pretty good time to be alive. (Hello? iPhones!) My Aspie, anxious and depressed son, my husband with the slipped disc, me with my own broken gene (BRCA-1, the breast cancer gene), my mother who had a scary encounter with global transient amnesia (she completely lost her short-term memory for 24 hours), my dad who had prostate cancer 20 years ago -- we are all LUCKY we live now, and not then.

Put that in your pipe and smoke it.

Thursday, February 23, 2012

He's Older Than You Think

I made a fantastic dinner tonight: Spicy Garlic Lime Chicken, roasted potatoes, broccoli sauteed in olive oil and garlic. My parents and I were having a fascinating conversation about how much longer the chicken took to cook than is indicated by the recipe.

Grandpa: This took a lot longer than twenty minutes.

Me: Yup.

Grandma: Those are extremely big breasts.

Benjy (grinning): That's what he said.*

Me: *giggle*

* This is a version of his response to any variation of "that's big": that's what SHE said!

Lars and the "Gardening" Clothes

So, here we are at Grandma and Grandpa's over vacation week (a real Delaunay holiday!), and I'm planning out my schedule for the week we return. You would think that, now I'm not working, there's plenty of time for leisure activities. TV. Books. Bon Bons.

You'd be dead wrong.

Every day I make a to-do list of, say, twelve items. Every day I cross off five or six, and copy the remaining items onto the top of the next day's list. I am like this little guy:

So I'm making my to-do list for next Monday, and the number one item is: Go Through Clothes.

We are buried in a mountain of clothes. Dirty laundry that just might date back to August. Socks and underwear two sizes too small, bursting out of their drawers. (Neither of my kids can close their dresser drawers.) Large piles of clothes in the corners of our "master" bedroom (the quotes are meant to signify the minuscule size of said bedroom, "master" being something of a joke in this case. Perhaps we should call it our "minion" bedroom).

In the minion bedroom, most of the visible piles belong to Lars. Not that I'm not a slob -- I am. Totally. It's just that my piles are out of sight in a laundry hamper I insisted on buying two summers ago. I filled it up at the time and haven't opened it since. Now I'm afraid to. The rest of my stray clothes go straight into the many laundry baskets that decorate our basement.

The trickiest part of this clothes project is going to be getting rid of Lars's old and holey clothes. (That would be, uh, most of them?) I try this every year or two, and each time I fail. Because unless I burn them, Lars will find them. He will pull them out of the trash, covered with egg shells and coffee grounds, and the next thing you know they're laundered and back in his drawer. When I object he tells me, "I'll use them for gardening. They're GARDENING CLOTHES."

At this point about three quarters of his garments are designated gardening clothes. Except they're not. They're just the clothes he wears to work every day. Do you think I find this humiliating? I DO. I asked him once whether his boss dresses nicely.

He said, "Are you kidding? He's gay."


"He's a GREAT dresser."

"Doesn't he care that you wear the same shirt four days in a row and it's got holes in the elbows?"

"I wear a different t-shirt underneath most of the time, so it's okay. Anyway, he loves me."

I'll bet.

I guess I shouldn't complain. Lars is a pretty good guy, in spite of his peculiarities. He's compassionate and loving. He writes a mean Valentine's Day/birthday/anniversary card. The last one made me gasp first, and then scream. He's pretty cute, too.

I think I'll keep him.

Tuesday, February 21, 2012

Halcyon Days

It's been five days since I've blogged about Ben, Saskia, Lars, or the Hellacious Hound. I guess that's because things are going pretty well. For the same reason that the novels, TV dramas, and movies we all love are filled with tension and obstacles as opposed to serenity and happiness (note that the happy marriage usually occurs at the end), no one wants to read a blog about smooth sailing. Do they? Boooring.

As I look over at my boy slumbering peacefully on the adjacent couch -- knocked out by his nightly meds -- I'm reminded of the many, many nights when sleep was a desperately needed reprieve -- for him and for me. I think the two of us, on his most dysregulated days, longed for the peace a protracted sleep would bring. Sometimes, I'm ashamed to admit, I slipped him an extra Ativan in the hopes it would make him drift off. We both needed that. All four of us did.

Now, Ben is experiencing success. As a fencer. As a friend. His stable of comrades just increased one hundred percent. There were three more or less reliable friends. Now there are six -- well, okay -- five and a half. These new buddies are boys he met through the club I started -- a club for Aspies who share an interest in the computer game Minecraft. As of tomorrow, three of these boys will have had Benjy over. And that, Readers, is an astonishingly lovely gift. He's had two hour-plus phone calls with one of them. Will wonders never cease?

But still, I can't helping being on guard. Because quiet spells have never lasted. Ever. In eleven years we've never had more than a couple of months of easy living. Things have always gone south. So I cautiously embrace the halcyon days, but I do not trust them.

One of the happy things in my life right now is the loss of work. I am more relaxed, more present for my family, than I have been in years. I have not browsed the writing or education jobs on Craigslist since November. What a relief that is! And we are making it -- just. I feel sheer joy right now. I love my life. How long has it been since I was able to say that? Not sure. Several years, at least.

The best thing, apart from Benjy's general happiness, is that I am writing again -- and writing things that I'm passionate about. I've put my novel-in-progress aside. Time enough to go back to that when my agent sells the other novel and I have to finish the new one. So right now I'm writing personal essays. I ALMOST sold the essay about parenting Ben to O, the Oprah Magazine. The editor there loved it but they don't really publish parenting essays. So she's invited me to write something else for the magazine, and I have pitched an essay about coming to terms with my dead sister and the sisterhood we never shared. Now that I am not thinking about Ben every single minute I can process some of the other stuff in my life. I have another magazine in mind for the Benjy essay, and I have several other ideas for articles, including one on the price of disability -- the cost to people's (usually mothers') careers and the impact on family finances. I am also planning a profile of Ben's inspirational fencing coach (who left Cuba to come to America with literally nothing but the clothes on his back, and who, among other things, teaches fencing to the blind and to cancer patients). I am SO excited to be writing again!

Of course, keeping this blog is writing, too, and I have found it to be therapeutic and a lot of fun. People from all over the world are landing here. How cool is that? I don't have any plans to abandon it. I might have to rethink the content, though. If I can no longer  write about parenting a child who wants to die, I will have to find other things to write about.

I promise they won't be boring essays on how great our lives are going. Well, okay. Once in while they probably will be.

Thursday, February 16, 2012

Domination by Cuteness

I couldn't resist.

Hellacious Hounds and Other Furry Quadripeds

Our Hellacious Hound is a moody fellow. I suppose this can be attributed to his age: he's more or less a teenager in dog years. When he's in a positive space he's waggy and cuddly and generally sunny. But in a flash he can become growly and nip at your flanks. He is a wonderful watchdog but at the same time a barking nuisance -- and his bark is loud and shrill.

This is the HH we love:

This is the HH who disturbs the crap out of us:


When you have a kid with severe sensory issues, a kid who can't bear loud noises or disruptive, unpredictable behavior, a dog like Hellacious does not always work. And yet, we adopted him (adoption can be a bit like Russian Roulette), gave him a warm, safe home. We love him in spite of his character deficits -- just as we love each other in spite of OUR character deficits (and all four of us have some, believe you me). And you know what? He loves us back. We're his family. His home.

I can't bear the thought of betraying him by taking him back to the shelter. And yet. Benjy often talks about the dog he wishes he had. The dog who is all his, who is always gentle and quiet and sunny. Who never nips at his heels or growls. Whose only desire is a boy to love.

(Remember her?)

I wish I could get him that dog -- if she exists. But I don't think that dog and OUR dog would mix -- and as imperfect as our is, he's OURS. Benjy would be a pretty sad guy if Hellacious were suddenly gone.

So we'll make do with the sunny/barky/growly/waggy hound we have. We'll wield the corrective spray bottle. And sometimes, when we're not cuddling with our extremely fluffy guy, we'll all just have to plug our ears. 

Chocolate helps at times like that.

Tuesday, February 14, 2012

A Beautiful, Profound, and Heartbreaking Blog

This blog, "Little Seal," has me transfixed. Baby Ronan is dying of Tay-Sachs disease, and his mom is recording their difficult journey. I can't shake the photo of Ronan, or Emily Rapp's devastating, profound chronicle of his waning life, and the way her own life is changing.

Sometimes a little perspective is a good thing.

Benjy and Performance Anxiety

At home, Benjy is a great clown -- when he's happy. He's an accomplished mimic. A creative performer. There are several characters he trots out on occasion -- the "G'Day Lady" chap (sorry, he's too bizarre to describe here), and the hungry, squeaky rodent, to name just two.

But performance -- academic, musical, athletic, etc -- and the expectations that go along with it, are a heavy, heavy burden to him. Homework was part of the amalgam of stressors that landed Ben in the hospital and then a special needs school, where -- at least for now -- there is no homework, and no tests. Any time Ben senses that some other person expects something from him, he crumbles.

When we realized he was a talented violinist, when his teacher was astonished every week by his progress, the speed and facility with which he learned new pieces and new, increasingly difficult techniques, he fell apart. Practicing became a burden. He spent half his lessons curled up on the couch, or watching YouTube videos of Gil Shaham or Anne-Sophie Mutter playing whatever piece he was working on, instead of playing it himself. His teacher learned that she had to walk on eggshells if she wanted to avoid precipitating a breakdown.

Now he has entirely given up the violin, much to our dismay. Today I will be returning his rented instrument to the music store. I kept holding off, just in case he would pick it up again, but those days are over.

There is nothing Ben has tried that he's been able to follow through on. Violin, video game programming class, soccer, basketball. So far he's still fencing, and three times out of four it's going okay, but I imagine when he starts feeling the weight of expectation, from his coach, from us, from his peers, he will drop out. Maybe I'm wrong -- I hope I am -- but history would seem to back me up.

The latest thing we are going to try is a Bar Mitzvah. We have a while -- until fall 2013 -- but already I am worried. This will NOT be a standard Bar Mitzvah -- anyone who's been to one understands the magnitude of learning and performing that's involved. It will be an afternoon service just with our family, maybe a close friend or two, and Benjy will carry the Torah and recite two short prayers -- the Sh'ma, and the Torah blessing. Saskia and I can teach him these -- no need for a year of tutoring like Saskia had. That would break him.

When our Rabbi told us that a celebration of Benjy, in the form of a Bar Mitzvah, was still within reach, I cried. I am not a deeply religious person. My God is simply the strength, courage, compassion, creativity -- the potential for good -- within myself. But somehow a Bar Mitzvah for Ben feels important to me -- just as a Bat Mitzvah for Saskia did. When Saskia had her day in November of 2010 we were so deeply moved. Of course, she is a very different person than Ben.She studied for a year and offered a beautiful and heartfelt "performance" -- tons of Hebrew chanting, a lively and thoughtful exegesis of her Torah portion (the one about competition between siblings, Jacob and Esau). She was a star, as she is in so many avenues of life. We just watched her onstage in the musical Oklahoma. She is a talented singer and actress -- absolutely fearless.

For Ben, there is rarely fearlessness. But sometimes he surprises us. He'll reach out to an older kid, make a connection. He'll plunge into a new situation, willing to give it a try even if it ultimately does not work out. It's just that damn performance anxiety that's keeping him down. I try so hard not to worry about the future. You've heard me say it before, corny as it is -- One Day At a Time. But how will he ever make it in life if he cannot perform, cannot handle expectations?

I'm trying hard to figure that one out. It may take me a year, or twenty.

Friday, February 10, 2012

"Rich and Thin" -- ha!

If you're as old as I am (ancient!) you might remember the way college students in the early 80s liked to stick cute little white boards on their dorm room doors. These had amusing (or inspiring) pictures and often some pithy or funny text involved. You could tell your little world a lot about yourself with your white board.

Well, when I was a sophomore I had a board on my door, and I thought this thing was the bee's knees. It featured a rotund pink piggy with a shiny diamond ring in her snout. The text read: "You can't be too rich or too thin."


Now, it's possible this was an ironic statement, given it was a FAT PIG who was wearing the diamond ring (a very cute fat pig). But I did not take it with an ounce of irony. No siree Bob. I EMBRACED that sentiment. I believed in it as if it were the first principle of the program of success I'd subscribed to. And you know what? A LOT of people did and do agree with me on that.

I want to be a millionaire by the time I'm thirty.
No thanks -- I don't like food, anyway. I'll take a cig if you have one, though.

As many of us know, life has a way of punishing you for the stupid things you think when you're young. Perhaps you will be pleased to hear I am neither Rich, nor particularly Thin.

It's funny how one's outlook can change over time. I once thought of myself as "upper middle class." I came from an educated family. In our humble town we stood out -- the "haves" in a sea of "have-nots." I enjoyed a fair amount of stuff. And I had the privilege to devote about twelve years of my life to higher (and then higher) education. To read Dickens and weep for poor David Copperfield and Little Nell. And that was a great thing -- I recommend reading Dickens and weeping for the vulnerable, the poor. But don't get into that rarified life where you can't feel for the guy who's cleaning the bathrooms at the airport because his life is so unlike yours.

Okay, Readers, I'm not really talking to you. More to myself. But these days I'm preaching to the choir. I still read Dickens and cry -- that is one of my greatest pleasures -- but now I feel more solidarity with the bathroom cleaner than the golf club set. By a long shot.

Having to count your every penny, and continually tighten your household belt makes all the difference, let me tell you. As does becoming aware of what it feels like to be vulnerable -- whether because you are poor, or disabled, or battered, or just a lost soul.

Having Benjy has taken me to this new place. I was already on my way, but having to confront a child's dysregulation and despair, struggling to keep him alive and safe, has made wealth and body weight a lot less important. Sure, we could use more money. We think about it, talk about it way too much, because we never have quite enough. But I'd rather be who I am now than who I was in 1983, that's for sure.

In other words, these days I like the pig a lot more than I like the diamond.

Thursday, February 9, 2012

National 2-1-1 Awareness Day

Every so often -- a lot, actually -- I feel enormous gratitude for the various safety nets that exist for vulnerable people. People like Benjy. Like our family. Thank God, or the gods, or the Darwinan principle that caused humans to develop a tendency toward empathy and social justice, for things like social security, and Medicaid, and yes, the dreaded Food Stamps. A lot of people would be hungry without them. And being hungry is not fun.

So I wanted to give a shout out to the United Way and its 2-1-1 service. Good stuff there. You can read the press release for National 2-1-1 Day on February 11th, below. This is specific to Massachusetts but I believe the general principle applies nationally.

For Immediate Release: 
National United Way 2-1-1 Awareness Day
February 8, 2012

Every hour of every day, people need essential human services - they are
looking for training, employment, food pantries, help for an aging parent,
addiction prevention programs for their teenage children, affordable housing
options, child care options, support groups and ways of becoming part of
their community. 

2-1-1 allows people to give help and to get help. 

2-1-1 is an easy to remember telephone number that connects people with
important community services and volunteer opportunities. 

In 2010, 2-1-1 services in the United States answered more than 16.4 million

On February 11, (2/11) 2-1-1 centers across the nation will celebrate
National United Way 2-1-1 Awareness Day to highlight the vital role this
service plays in communities across the nation. Currently, over 86% of the
U.S. population has access to a 2-1-1 service.

2-1-1 is available to all residents of Massachusetts. 

In Massachusetts in 2011, Mass 211 handled over 82,000 direct calls from
individuals and families looking for connection to services. There was an
additional 100,000+ searches on the public database available at

The top calls to Mass 211 in 2011 included housing-related calls
(eviction/foreclosure prevention, homeless shelters), food-related (food
pantries and food stamps-SNAP), and utility bill payment assistance.

A caller to 2-1-1 will reach a trained Information and Referral Specialist
who will help them prioritize their needs, explore the options and programs
that are available and make referrals to services that will best fit the
caller's needs. 2-1-1 I&R specialists empower callers by educating them
about programs so that informed decisions can be made.

In order to provide the most accurate resource information available, Mass
211 maintains a comprehensive, continually updated database of health and
human services. This database contains information on basic needs, programs
for youth and older adults, substance abuse treatment resources, health
services and more. Mass 211 is part of a statewide network of
community-based Child Care Resource and Referral Agencies that help match
families with Early Education and Care Educators and other resources that
help children grow and learn. Mass 211 Specialists screen families for child
care subsidy eligibility and add qualified families to the state's wait
list. Mass 211 also serves as the Commonwealth's primary telephone
information call center during times of emergency.

2-1-1 is available 24 hours a day, 7 days a week by dialing 2-1-1 or

Calls to 2-1-1
are confidential and anonymous. Translation and TDD/TTY services are
available. Mass 211 is a program of your local United Way.

Monday, February 6, 2012

Parenting 101

Parenting a child might just be the hardest job on the face of the earth. Okay, it may not rank with those jobs Benjy watches on TV ("The World's Dirtiest Jobs"??) in terms of ickiness  -- although, on the other hand, I think we've all had poop under our fingernails at one point or another -- but man, is it challenging.

Especially if your kid is a moving target.

What you do on Monday when your kid is smiling and functional is completely different than what you will do on Tuesday when she is knocking her head against the wall/searching for knives/Googling the phrase "help I want to die." And chances are, no one will be there to advise you in the midst of the head-banging. You will have to run on instinct. Or pray for divine guidance (although in my experience this route takes too long and is better undertaken in an "emotion recollected in tranquility" sort of mode ;).

I wish someone had published a book on how to REALLY do this job. (I know, there are a million of them out there, but what good are they when things change by the hour?) I would make said book my next writing project except it would take forever to compose because it would be in constant revision. What I mean by this is that my store of parenting knowledge is in constant flux. When Benjy evolves in some new way, my brilliant parenting notions -- for example, oh, you've got to be matter-of-fact when he's curled up in a ball and unresponsive -- are shot to hell. Because all of a sudden, matter-of-factness drives him over to the knife block.

You can read all the parenting books you want, but when the chips are down it's still you and your kid. No one will take that burden, and that privilege, away from you.

I feel somewhat like a deer, always on alert, always listening for some chilling change in the environment -- a new sound, a sudden breeze, a scent. I have to listen, and watch, and sense my environment for changes in Benjy's emotional state. Can I take a few moments and enter receipts into our finance spreadsheet? Can I write a little? Clean the kitchen? Or do I need to be parked right beside Ben on the couch, bodies in contact, to feel if his is clenched, or shaking. To sense if he is going down.

Now, don't get me wrong. I know that parenting is hard for just about anyone. You take a fourteen-year-old girl and her hormones, and you've got a parenting nightmare. Make it a boy and it's double trouble. Homework issues, bullying, weight issues, you name it. It's all a challenge, with or without a disability thrown in.

But you know what? Sometimes we get it gloriously right. Almost every one of us.

It feels great when that happens, even if our trenchant insight is only valid for one hour.

Saturday, February 4, 2012

I'm Feeling Good.

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

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

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

They included my kid.

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

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

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

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

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

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

And that, Readers, is something to celebrate.