A 47-Percenter, In All Her Glory

The title of this blog post could refer to any of my friends and most of my family. I don't actually know any one-percenters (although, funnily enough -- and I apologize for this indiscretion -- I am related to one or two of them). Frankly, the "takers" in my life by far outweigh the "makers," if you count amongst the takers folks who live paycheck to paycheck, and who are planning to collect (or already are collecting) the social security they've worked hard to earn. Some of them/us even rely on this wonderful state of ours (Massachusetts, I'm talking about you) for help with medical insurance. Maybe even food. I wouldn't be surprised.

Did I mention that every 47-percenter I have ever known, and I've known quite a few, has worked very, very hard, sometimes under unpleasant conditions, to take care of themselves and their loved ones?

But forgive me. this is not a political rant.

On Friday I met an inspiring woman. She broke my heart. I was at the hospital to pick up Benjy. To my utter delight he was ready to be discharged. I was sitting in the day room of the unit, waiting for his case manager to come with some forms for me to sign, and some prescriptions, and in swept a hospital cleaning woman. She was comely and energetic.

She started up a conversation with me. I had some trouble decoding her accented English -- she was clearly Latin American -- but I understood that she was glad the rain had held off. She would have gone shopping that morning if she'd known the forecasts were wrong.

I nodded and smiled, not really knowing what to say. "I know," I said.

There was a little girl, maybe ten years old, who had been admitted the day before, and both the cleaning woman and I kept glancing at her. She was a waif-like child with short, thin hair -- it looked like she'd taken scissors to it -- and sharp features. She'd been wailing fretfully since arriving on the unit, and because she seemed so vulnerable we both, the cleaning woman and I, felt drawn to her.

"I so sad for her," the woman told me, and a shade of grief passed over her face. "All these kids. Is sad. They try so hard, and life is so hard for them."

"I know,' I said again. I wasn't sure she realized my son was one of them. She smiled at me, such a warm smile, and all the while she mopped the floor. "Am I in your way?" I asked her. "Should I lift my feet?"

"No, sweetheart. No worry. You're not in my way."

I watched her in silence. At first she had seemed lively to me. Now I saw, in a certain heaviness of motion, that she was tired.

"How are you?" I asked her shyly.

She told me. How he brother had died of heart disease at the age of forty-four and left a wife and two children. How he'd said, in the hospital, that he was dying, and she'd replied, no you're not, we're taking care of you. How he'd said he was, and that his wife would follow soon after. How she had paid twenty-thousand dollars for his surgery and his hospital bed, because where she comes from there is no medical insurance, and how he was right about his wife. She died four months later, and the cleaning woman took on the job of supporting their children.

She told me how her sister is dying of colon cancer and her mother is old and infirm, and how her brother-in-law was murdered in a hold-up at a corner bodega. She is working to keep all of them afloat, scrubbing toilets and mopping floors. She is tired, and she is kind, and several times she called me sweetheart. She loves the children on that psychiatric ward and she pities their pain.

I thought she was a beautiful woman, radiant in her kindness, in the way she labors, without complaint, for others. She takes responsibility for herself and for her family. For these aching, broken kids she cleans up after.

We talked for about ten minutes and then the case manager arrived and I was swept into papers and instructions and thanks.

I never got to say goodbye to my friend. Floors mopped, she had slipped away. And even in the flush of pleasure at taking my boy out with me for good -- or, for now -- I felt sad.

I wish I could have told her she was beautiful. And good. Even without an evening gown, or a dressage horse, she is a maker. She made a huge impression on me. I wish I knew her name and address; I would send her a poem.

A Lesson In Perspective

Today I braved a horrible, throbbing, choking head-and-chest cold to pick Saskia up from volleyball practice. I was feeling blue because I was simply too sick to drive a second time into Boston to bring Benjy dinner at the hospital, so he was going to have to eat whatever slop they serve.

(This means he will go to bed with an empty stomach -- he doesn't eat my slop either, or anyone's. He only eats double quarter pounders, Big n' Toasteds, and the occasional "BLB" (bacon/lettuce/bbq sauce) from Subway. Period.)

And I wouldn't have the satisfaction of wishing him  goodnight in person. So I was kind of sad.

Well, Saskia gets into the car and tells me that practice sucked because she was tired, but that it was actually quite good (that ol' teenage logic), and that her day off on Friday, for a visit to rheumatology, cost her big in terms of make-up homework. She expects to be up until midnight.

The visit to rheumatology was about a stiff, aching, hot and swollen knee. When you have "pre-lupus" and that happens, the doc has you get in there to be seen, pronto.

Turned out it might have been arthritis and it might have been an injury. She didn't remember injuring her knee, but volleyball is a knee-intensive sport after all. So how could we be sure? We scheduled an MRI and blood work, and were told to cancel if the knee miraculously got better on its own, Because only an injury does that -- arthritis does not. And now I get the distinct pleasure of canceling those appointments, because the knee is cool to the touch, doesn't hurt anymore, and no longer looks like a blob of risen dough.

Saskia: 1
Lupus: 0

Yeah!

But you were expecting a lesson in perspective, no? Fine, here it is:

Me (in car, driving): Do you have a lot of work from Friday to make up?

Saskia (in passenger seat, head resting dreamily on hand): Yeah. I have to do most of a science project tonight, on top of everything else. But I told my teacher I've been sick, and that our family is, uh, having problems, and I think she won't take points off.

Me (wondering what her teacher thinks is going on -- infidelity? Drinking? Abuse?): Welcome to the School of Hard Knocks, Sweetie.

Saskia (with a slight shake of her head): Not really. I mean, we're not hungry or homeless or anything. And no one is dying.

Me (beaming, and if truth be told, a bit teary): Thank you for that lesson, my dear.

That kid is going to do big things someday. :)

This Lonely House

This house is so lonely without Benjy in it, I could cry. I woke up in the middle of the night to use the bathroom, and peeped into his dark, open bedroom. Because for a tiny moment I had forgotten he was gone.

His narrow bed with the white down comforter was empty.

I caught my breath and when my heart calmed I went back to bed. I woke Lars and told him I missed Benjy. "Me too," he said. "And the sad thing is I have so much work on my plate right now I probably cannot even visit him."

Because Benjy is back in the hospital, the same one I wrote about last October when this blog was born. He knew he was struggling beyond our ability to help him, beyond the collective abilities of all his outpatient mental health professionals, and he wanted to go. We left him last night at peace with his surroundings and himself.

It reminds me of the story of Mary Lamb, early 19th-century writer/intellectual and sister to the essayist Charles Lamb. I only know about Mary Lamb because in some college English class we read something by her brother, and the Norton or Oxford anthology offered a little blurb about them.

Apparently, Mary Lamb was intermittently "mad" (yes, the Norton or Oxford editors chose to use that word), and whenever she felt the madness coming on she would calmly and patiently ask for her strait jacket, and Charles would strap her up, and they'd walk to the nearby lunatic asylum. (Forgive me that -- it's what they called them in the 18th-19th centuries, and you'd be better off in prison. Really.)

I can't help thinking about Mary Lamb when I think of Benjy's understanding of his own needs, his willingness, and even sense of relief, when we told him we thought a hospital stay might be in order. He WANTED to go. (Except Mary Lamb stabbed her mother to death, so I hope the similarities end there! ;)

What Benjy said was: "I need to take a break from things. Life is too hard right now, so I need to step off it." He didn't mean permanently. What's wonderful and beautiful this time is that he is NOT suicidal. He is just completely non-functional, at school and at home. Deeply depressed. Withdrawn. sleep-dysregulated (sleeps all day at school, up all night at home). Unable to eat much. Ticcing so severely his body is never at rest.

For us, that may be the hardest part. Watching him tic relentlessly. Of all the things that make Benjy different, that one is the most public, the most obvious.

I know that one very well, thank you. It is a curse. There's chemical help for it, but at the very least it makes you fat. At the worst it makes you a cognitively blunted, fat zombie. It makes you walk and talk funny. It makes you need glasses, and to drink water every ten minutes because your mouth is dried out.

(HALDOL, I'M TALKING ABOUT YOU.)

I once swore I would NEVER, EVER make any child of mine take Haldol. The Soviets, according to my father, gave it to political dissidents to render them metaphorically impotent. So I was sure as hell not going to give it to any kid of mine.

Now, looking at my poor Benjy, I have to wonder what would be best. Because he's going to have to choose his evil. Would he rather be a weirdo due to the tics, which are exhausting to boot, or due to being a fat zombie (see above)? I'm afraid that may be a choice he has to make.

What is it about our family that we tend to be given shitty choices?

The Universe: OK, Anna, you can either have breasts and ovaries or I'll give you a fifteen percent chance of surviving into your forties. Quick, you don't have much time to decide!

Me: Uh, can I draw again?

Somehow, life doesn't want to reshuffle and give you anther hand. So you have to make dowith the one you got. Ben got the one that gave him Asperger's and Tourette's and OCD (I haven't even mentioned that DX yet) and mental illness. I got the one that gave me Tourette's and the breast cancer gene. Poor Saskia got the one that gave her what appears ever more convincingly to be lupus. (Did I mention that the day before yesterday her painful knees, thought by her rheumatologist to be runner's knee and not the arthritis caused by Lupus, because her knees were not hot and swollen, have now become hot and swollen? Troubles come in groups around here.

All I can say is, thank god Lars is completely normal. Except he's barking mad in his own, endearing ways.

Anyway, I am bracing myself for a lonely day, with no Ben to pick up at two-thirty (or hang out here with, as the case might have been) and Saskia out at a volleyball game until 7:30 or 8, and Lars no doubt working late.

Thank goodness for the Hellacious Hound, that's all I can say.

And Melancholy Creeps In

A line from a melancholy 17th-century poem has been visiting me since last night. I can't shake it.

Mais ou sont les neiges d'antan?
("But where are the snows of yesteryear?")

I know the poem is by Francois Villon, the "highwayman poet," and I know it is kind of sad. But I can't remember anything else about it, and I can't let that one line go. My own little obsession.

It might be sadness, or regret, that summoned Villon. Because the darkness and dysregulation of autumn are upon us, and I am not ready. Not strong enough for the challenges that await. Not yet, anyway. That sort of strength has to accumulate.

So, Benjy is not doing well. I can read in his face, his posture, the way he walks, and in his complete withdrawal from family life, that he is going down.

Last night he did not sleep at all.

And he is OBSESSED with that damn computer. He will not participate in eating with other people. He will not read, or bathe, or engage much in conversation that isn't driven by whatever digital realm he inhabits at the moment, unless I exert tremendous pressure on him. Half the time I don't have the energy for that. Because it's only early autumn and I am not yet strong again.

We see the psychiatrist on Friday. He's going to do some new (and expensive) test involving a cheek swab to see which of the few medications we haven't tried Benjy will be able to tolerate. Whichever is the winner we will try. Because what he's on is clearly no longer working.

I have this dreadful feeling that a third hospitalization is pending. Maybe every year when the days are short he will need a tune-up. I just hope, if it happens, they'll let him be in the children's unit as opposed to the adolescent one. Those teenagers are world-wise, hard-edged, drug-involved (some of them). There is a toughness to them. I know this; I've observed them before. I am so damn afraid that, if he goes to the hospital, they'll put him in unit 2 this time, because he's on the cusp of adolescence. Even though he is just a kid.

Oh well. He's asleep now, at last. My poor boy. I have hidden his laptop; we'll see how that goes over. I have got to get him unhooked from that beast. And I have to find the strength, the patience, and the ingenuity, to keep him from falling apart without it.

Wish me luck today, Readers. God knows I need it.

Shrinking Sphere of Functionality

This one has to be quick -- there are children and husbands to wake and shepherd out the door (and coffee to be mainlined).

Benjy's sphere of comfort and functionality is contracting. The Joy School is not working. Well, it is in the sense that it's a super-therapeutic school, and if he sleeps all day there they'll deal with it.And he knows it's the best possible school for him (so do we). But his tolerance for just about everything there is waning. He won't eat on the premises (eating at school -- and at home -- has been an intermittent problem for him). The other kids annoy the hell out of him, because they are possibly even more impaired in a social and life-skills sense than he. Work of any sort causes him unbearable stress. So he sleeps.

And his participation in family life has been waning as well. He cannot really bear to eat much at home, certainly not to eat with his family. Requests to help with chores make him physically flinch. He'll do it, in a half-assed sort of way, and then rush back to the safety of his couch and his computer. As if he's been shocked or something.

His new neurologist, the Tourette's specialist, wants us to get him into a sleep study. While she's not ruling out heightened depression, she wonders if he might have sleep apnea. Insufficient sleep can cause depression, anxiety, and worsened tics. So that is one of two calls I need to make today: the call to arrange a sleep study and a call to his psychiatrist, to talk about med adjustment.

Readers, it's autumn. The days are shorter and darker. This is always the time of year he goes down. Just about a year ago now he entered Franciscan's psychiatric unit, for his second hospitalization.

I hope we're not heading for number three. On that note, I will perform my human alarm clock duties. Have a good morning!

Another Felon Refuses to Repent

You didn't buy that display of doggish submission in my last post, did you?

Here's another felon who refuses to repent: Mozart's Don Giovanni. This is from my ALL TIME FAVORITE production, the 1970s film by Joseph Losey. I wish there were subtitles, but what's happening is, the statue of the Commendatore, whom DG killed in a duel after trying to rape the old man's daughter, Donna Anna, has come back to seek vengeance. Yes, the STATUE (I know, I know). And he is one SCARY DUDE.

Naturally, Don Giovanni refuses to repent (C: "Pentiti!" DG: "No!!") and accompany the statue to hell. Watch and see what happens. (I love DG's servant, Leporello, cowering under the table. Watch him, too.)

Enjoy!

The Hellacious Hound Repents

Just look at him. The Uriah Heep of the Doggiverse. He's 'umble. Still recovering from that little girl turning to her friend and saying, "Is that a CAT?"

This picture does not tell the whole story of his crimes and misdemeanors. I'm just saying. It MIGHT be that a pan of lemon squares was bolted when my back was turned. And it might not.

Good Readers, you'll have to decide for yourselves.

Backwards and Inside Out

I have a new name for the men in my life: "Backwards" and "Inside Out." That's what they looked like a couple days ago when they came down to breakfast.

Benjy ("Backwards") and Lars ("Inside Out") do not know what to do with a shirt.

I feel like I'm living in an SNL skit, Mike and Ike or Kurt and Burt or something. The guys who can't seem to get themselves dressed right.

The fun never ends here at Comedy Central. ;)  I'm going to giggle over my first cup of coffee.**

**Update: yes, I did have coffee this morning. (For those not in the know, we are supposed to fast on Yom Kippur. No coffee, no water, no nothin'.) Yeah, I cheated a little. My excuse? My meds make fasting difficult. And I am SO addicted to coffee I would probably have what we used to call "a conniption fit" (what IS that, anyway?) if anyone looked at me the wrong way.

Should I, or Should I Not?

Write and speak about Benjy, that is. I've brought this up on the blog before (and one or two commenters said, yes, you should, if that's what you want to do!), but it's really troubling me this morning. I had a sleepless night, just dwelling on it.

I mean, how would I feel if I found out my Mom was secretly writing about me being breastless, having Tourette's, all that stuff  -- and how hard that was for her? If she used pseudonyms it would help, of course. But today when I speak at synagogue I am only changing "Benjy's" name, not mine. Most of the few hundred people there do not know us; they have never set eyes on him and probably never will. And those who DO know us know more or less about these issues.

Am I a Bad Mother?

I do it not to exploit him, to feed some unhealthy appetite -- mine or others' -- for the lurid, the painful and the sad. I do because it is therapeutic for me, and, I hope, helpful to others. I do it because I HAVE to, if I am going to survive this journey.

But that begs the question: Is this good for Ben?

I don't know. To the extent it's good for me, I think it may be good for him. I hope beyond hope it will never hurt him. But I fear if he found out it would be all over.

The last thing I want to do is betray my child. whom I love beyond measure. I feel pretty rotten this morning, I have to say.

A Yom Kippur Offering

I've been asked by our Rabbi to offer some thoughts to our congregation tomorrow, on Yom Kippur, the Day of Atonement. She is a reader of this blog and thought I might have something to say about adversity, resilience, and gratitude. I do, so I wrote something up.

And today I really needed to think about it. Because Ben and I went to the Tourette's clinic at Mass General, and I had to tell his story to the doctor while he lay on the examination table, ticcing violently and clearly rendered uncomfortable by the things I was saying.

I think the way I get through life is by compartmentalizing. I think only about yesterday, today, and tomorrow, and then it's not so hard. But when I sum up the whole shebang -- all the crap from age two to twelve -- I hit the metaphorical floor. Because it seems impossible that we have gone through what we have, Benjy especially, and are still in one piece (more or less). Did you know that that boy has seven diagnoses, five of them either developmental or psychiatric -- and two years ago it would have been eight, because the Panic Disorder with Agoraphobia still stood?

Oy.

Anyway, I wanted to share my Yom Kippur Offering with you. Just reading through it tonight made me feel stronger. Enjoy!

 Good Yom Tov! I want to thank Rabbi X for inviting me to speak on this special day, in this place that means so much to me.

I’d like to start this Yom Kippur offering with an excerpt from a memoir I’m writing, called Benjy, Awake. The memoir is about parenting a child who wants to die. That child happens to be my son, and as I always do when I write about him, I will call him Benjy.

On a blossom-scented spring day, my son Benjy, almost eleven and off kilter, begged me to help him kill himself.  It was a day I will not forget, even if I live to one hundred and four and cannot remember, from one hour to the next, the angles of my children’s faces. The request took my breath away.  I saw the glinting river, the Charles, out my car window, and for a fraction of a moment I felt the urge to drive us into its arms. It would be quiet, after years of struggle, in the water’s cold embrace.

This was a fleeting thought. My pull, for the most part, has been toward life – living it, feeling it intensely, helping Benjy to choose it if he can. It is not clear to me that he can make that choice. Benjy is a boy who wishes to die.

To have lived a mere ten years and long for the end is a state of mind beyond belief. We are taught that a child inclines toward his birthdays, and for the most part our experience bears this out. Yet here is a boy, not badly behaved, not unintelligent; possessed of a family who loves him and food in sufficient quantities, who has looked life over and decided against it.

I never thought I would not know whether my child will live to adulthood.

The reason I’ve been writing, almost obsessively, about Benjy’s unquiet mind – and his loveliness, and his quirky intelligence, and his serious social and self-care impairments as well (Change my clothes? Why?) -- is because I need to work out my relationship to the sadness and adversity that have intermittently entered our family life over the past ten years. So I write fiction about this stuff, and I blog, and I write personal essays, and I’m working on a memoir about parenting Benjy, who, on and off over a very long eight years, has wanted to end his life. Because writing about these challenges, and talking about them, helps me gain some perspective on them. Not only because the narratives I construct contain the anguish, but because writing, and talking, involves connecting with other people. Sometimes readers comment on my blog, offering support, advice, or their own stories. And the audience of my published and private writing is listening too, even if I never meet any of them. There is enormous comfort in reaching out to other people, in being heard – and in their reaching back.

I’ve been seeking the comfort of community ever since Ben’s first diagnosis, at the age of two: PDD-Nos (Pervasive Developmental Disorder Not Otherwise Specified). This is a fancy way of saying, your kid has autism but it’s not yet clear how severe this autism will be.

Let me tell you, it was severe. Until around the age of five, Benjy presented as pretty autistic. I needn’t now go into what that means. Just imagine being stretched, as a parent, to the very limits of endurance. Frustration, and bewilderment, and sometimes anger, and sometimes public shame (because other people look at you like you’re the worst parent in the world and your kid, the worst behaved child, and you just want to scream, We. Can’t. Help It!).

The good news is that today, at twelve, Ben is NOT autistic in that same way. He has Asperger’s Syndrome, which brings its own challenges, but there is no question about his extreme intelligence and his ability to connect— with us and the world, past and present. In our household words like sauropod and coelophysis are regularly dropped about, and not by the over-educated adults who live there. I once heard him utter the sentence “the Dicynodonts were the most successful species of plant-eating therapsids,” and what I’ve learned about global military history you simply would not believe.

The real problem for Ben more recently has been mental illness – severe anxiety, major depressive disorder, and a hankering after death.

The first time he talked about ending his life he was four years old. You heard that right. Four. Of course, we didn’t hear what he said as a death wish, because four year olds are not suicidal. Right?

But he’d told his teacher he wanted to throw himself under a truck or out the second-story window of the school, and next thing I knew I was told to pick him up and not bring him back till he was “safe.”

This was the beginning of a journey that has included about fifteen different medications, loads of therapy and psychiatry, two psychiatric hospitalizations, and various acts of self-harm.

And yet, Benjy is alive, and for that, those who love him are eternally grateful. He’s emphatically NOT DEAD. He’s at home as we speak, probably watching YouTube videos about breaking the sound barrier or the helicopters used in Vietnam military combat, or playing one of those video games I abhor. Thank God. And thanks to a community of caring teachers and medical practitioners, family and friends – the people who have been there for us when we’ve asked for help, or commiseration, or love, or a coffee meet-up.

You know, one thing I hear a lot is, I have no idea how you do it. To which I always say, I do it because there is absolutely no alternative – and you would do it, too.

What’s beautiful about people is our potential for braveries of various sorts. Some people stand up to gunmen, or throw themselves in the line of fire to protect loved ones, or even strangers. I could never, ever do that, but some people can. Some people do good, important work in dangerous places. Some people have the patience to listen to a child’s incessant questioning, or the wisdom to counsel a friend in trouble. Those are brave things, too. Others have the courage of their ethical convictions, and stand up to corporate or political or schoolyard bullies. And I have confronted the specter of death, along with Benjy, and my husband, and our daughter, again and again, and I have made my own sacrifices – professional, financial, the sacrifice of many a night’s sleep -- to keep him safe.  I have many times looked at the blood stains on his pants and shirt after a day in the school that could not protect him against himself, and kissed and nursed his torn fingertips, his lips swollen and black from his own biting teeth. There were times I thought I would just collapse under the horrible weight of seeing my child like that, a child not only bloodied but emaciated because his illness would not allow him to eat, but I didn’t, because he needed me not to. I have my strength, you have yours, others have theirs. I’m hoping that someday, Benjy will find his, and hold onto it for dear life.

It’s a fitting endeavor, on Yom Kippur, to try and figure out our own strengths, our capacity for resilience and for thankfulness – even in the face of disappointment or hardship. Two things I've learned, over these ten years of struggle, is that emotional and ethical connections to others can make us stronger, and that as bad as things get, there is always someone out there who’s got it worse.  The parents whose child has made a plan, and acted on that plan, and completed suicide. My own parents, who lost a child to cancer. Speaking of strength and resilience, I will never forget my mother on that night Andrea died. We, Andrea’s family, were standing beside her hospital bed. It was her 36^th birthday. My brother Rob, my Dad, and I had flown to Cleveland in a rush, hoping we’d be able to say goodbye. And when we got there, my mom, who’d been living with Andrea and her family on and off in the four years of her terrible illness, while my dad stayed home and worked, was there. Our anchor. She did not succumb to her anguish – yet -- because Andrea needed her to be strong. And what I noticed and thought curious was that my mother was wearing a red pantsuit – a really nice one, and sort of typical of how my mom dressed in those days– and the pin that Andrea and I had given her for her last birthday.  And I thought, why did she plan out her clothes like that, so deliberately, when Andrea is dying? At first I was almost angry about it, as if she’d been focused on trifling things in the face of this massive tragedy. It was only later that I understood it. She did this for Andrea, for Andrea’s ten-year-old daughter, who’d come to the hospital to say goodbye to her mother, for all of us. She knew we needed her to be the strong person she’d been throughout, to carry us on her metaphorical back. She knew that Andrea, before she slipped into her coma, needed to see the same mom she always saw, and not one who’d fallen apart, so that death would not be quite so frightening. That was her gift to her family – a mother’s gift. It taught me the true meaning of selflessness – a lesson I put to use some sixteen years later, when my own family needed the same strength and devotion from me.

That kind of strength and resilience is something I strive for every day. Sometimes I find them. Sometimes I definitely don’t. Writing, for me, helps. So does reaching out to others – offering and accepting support. Because my greatest lesson, I think, in these years of struggle, has been this: you cannot do it alone. Other people can be sources of knowledge, support, and love – and you can be the same for them. Other people can help you figure out how to fix your problems, or simply how to endure. That sense of community, and of being heard, is what, in the end, has kept me afloat – and I believe it’s what has stayed Benjy’s hand, made him choose life (for now, at least) over the stillness of death. He knows that there are people out there who love him, or even just like him – and perhaps more important, who NEED him to stay alive. He knows he is not alone.

The poet John Donne put it this way:

No man is an island

Entire of itself.

Each is a piece of the continent,

A part of the main…

There will come a time when I have less influence in Ben’s life, and less control over it. That is the time I dread. What I want to tell him is this: value people, even though many have been unkind to you over the years. Reach out, and respond when others reach out to you. That, more than anything, will enable you to live on the continent -- a strong life, a rich life, and a life of gratitude.

 

 

And This Does Not Make Me Laugh

Today was the start of a new year for some of us. (L'shana tovah, my Jewish friends!) For Benjy and me this beginning was bittersweet. Actually, for Ben it was just bitter.

This past weekend Benjy may have lost his oldest friend -- a true, close, trustworthy, safe buddy. A boy who just "got" him, accepted him for who he was. This boy happens to be the son of my best friend -- convenient, no? -- and as different as he is from my son (more on this in a bit), for years the two of them really connected.

When Benjy decided he wanted to sign up for town soccer a year or so ago, and M--, who is a MAJOR athlete, came to see his first game, and Ben (of course) had no idea how to play soccer and was belittled and rejected by all the other kids, M-- said all the right things. No matter that Ben rushed into the car after the game and screamed and sobbed and tore his hair and banged his head against the car window.

"I'm not very good at soccer either," M-- said. "And you were pretty good for your first time."

His very presence has always helped to regulate Ben, and his admiration for Ben's intelligence gave this boy who values athletic prowess above any other accomplishment, simply because that's what his peers value and he does not have it, a real lift.

Multiply these positives by orders of magnitude and you have a glimpse into the friendship of Benjy and M--.

HOWEVER. M-- is in middle school now. And when Ben and I were visiting M-- and his mom this weekend, it seemed pretty clear to me that M--, in typical middle-school fashion, has noted the social inequalities between himself and his awkward and klutzy friend (throw in some serious ticcing for good measure) and has made a calculated decision to bail.

The problem started with the arrival of another boy. My friend had decided to invite another friend to the house but had neglected to let me know this, so I could alert Ben.

Now, a sped mom would never cavalierly invite another kid into the mix -- especially a tall, handsome, athletic one (this guy happens to be on M--'s hockey team).

Ouch! Double ouch! I bet you know where this is headed.

Yup.

And not only could I do nothing about it, but I couldn't even take Ben back to Boston (M-- lives in Connecticut, and as it would soon be twilight and I cannot see in the dark, we were stuck.

I let my friend know I was displeased. Because she is my bestie she took it like a man.

The tall-handsome-hockeydude left around dinnertime. And for a while I thought the few hours of rejection and neglect were just a blip. An anomaly. They boys lay side by side in M--'s bed (yes, they are not quite adolescent, and there was no one except my friend and me to see it) and watched Youtube videos. The image of best buddies.

So I was gobsmacked the next day when M-- was downright mean to Ben, rejecting him again and again, declining the gift of a plant for his fishtank Ben offered him (I'd felt so sorry for Ben I'd taken him to Petco for fish supplies) with a surly "NO." When Benjy mentioned feeling stressed, M--retorted "What do YOU have to be stressed about? All YOU do is sit in front of the computer."

(This in spite of the fact that Ben had spent much of the previous day helping a friend of the family construct a zipline for M-- in the backyard.)

Mean. It brings tears to my eyes to write this.

Somehow I think it's real this time. There've been squabbles before, flashes of rudeness or annoyance on both sides. But this time M-- would not even look at Ben when he took him down. It was as sincere a rejection as I've seen.

So this new year is starting a bit sadly for the Delaunays. It's hard to imagine it might be a year without M--'s toothy smiles in it. Thank goodness my friendship with his mom is secure; losing her would kill me. I think I know how Benjy is feeling, and it's NOT GOOD.

Going to Connecticut without Ben in tow will be strange indeed. I hope I read the whole thing wrong, and M-- was simply grumpy, tired, pissed off at his mom or his dad or the wide world.

Maybe he'll come to Boston soon to collect on the birthday present we owe him. I was looking forward to taking the boys to an archery range, followed by lunch at Burger King.

Happy New Year, my sweet Benjy. I truly hope the year brings you happiness, peace, and great friendship.

This Makes Me Laugh

I've noticed that my post "Body Sox and Other Sensory Pleasures" gets way more hits than my other posts.

Why do you think that is?** Please chime in by commenting (off-color comments welcome, especially if they make me blush).

It's been FOREVER since anyone's commented. You out there, Dear Readers?


** I Google Imaged. Now I know. And yes, I am blushing.

This is so freaking beautiful.

Enjoy.

 

 

*Thanks to lovely Eve G. for the link.*

Overheard in The Peanut Gallery...

...Or rather, in my van (where I'm sure many a peanut lurks in unexplored crevices).

Herr Benjamin is smart. I know I've mentioned this in the past. Tonight, he and I were driving home from dinner at my brother and sister-in-law's house. It was not a perfect evening; Benjy did all right for a while and then melted down. With ten of us in the house, including his rather loud cousin, he was quickly overwhelmed.

But riding alone, in the dark, with only me for company, set him straight. He likes the peace of silence and darkness.

Still, we talked. And I learned. About the military conflict in Somalia way back when, before he was born. And in Yugoslavia. I learned about military expenditures around the world ("Picture a bar graph. This bar's American military spending. This one's China's. Here's Germany [I know, not that much. that's a GOOD thing, mom]."

"Cool," I said. And meant it, more or less.

Benjy continued, "I think we spend too much on war. I also think we should pay more at the gas pump. Can Obama do something about that?"

Oy vey, let's keep him away from the Obama camp, shall we? Talk about spoiling an election!

But all that is nothing. Just Benjy being the savant in backwards clothing that he is.

What was truly amazing was this exchange:

"Mom, I CANNOT go to school with this new tic. [New tic involves snorting and blowing through nostrils. I am intimately acquainted with that one.] Everyone will notice! I can't bear that!"

I told Ben that the Joy School is the best possible place for a boy with tics. He considered this. Then he said, "I have Asperger's. I also have tics. Saskia is always getting sick and has those muscle cramps (read: joint pain). I guess we're about even."

"That's true," I told him. "And most people have challenges they have to face. I certainly do, and so does Dad."

"Asperger's," he told me, "is actually a benefit. I mean, it makes you smart, and when you have all these obsessions you learn all about stuff and really retain it. That's pretty cool."

"Absolutely," I agreed. "But, as with most things, there are upsides and downsides to it. Some of the things that are tough for you are that way because you're an Aspie."

"True," he said. And then, this: "You know what I always say? I say, 'Shit happens.'"

"Yep, it does."

"You know," he said. "I'm PROUD I have Tourette's."

Reader, this was a new one. It may have been the first time in history someone with TS uttered those words. I am glad I was there to hear it.

He continued, "I'm proud because I know I can handle it. I'm strong."

If I could have taken my hands off the wheel and my eyes off the road I'd have thrown my arms around him and never let him go.

"You ARE strong, Ben! And you know what? I admire you so much. I'm so damn proud of you. I never hear you say, why me?? I never see anger or bitterness over all you've had to bear. I just see you soldier on. And that is the best thing you can do. The best thing any of us can do. We accept the cards we've been dealt, we fight if it makes sense, and if it doesn't, we embrace our lives and find a way to live with grace and gratitude, even if we make funny noises or grotesque faces, or are socially awkward. That is all we can do."

"Mom?" he said thoughtfully. "Do you think I will be successful? Because I really want to be."

"I think you will be, Ben. Because I have faith you will overcome your stress around work and expectations. And once you are really able to work hard, the sky's the limit for you. You're a smart, charming, and good guy."

Thanks, Mom," he said, squeezing my elbow.

You know, when I was twelve, having Tourette's was a catastrophe for me. It truly was. Taking Haldol and getting chubby and zombified from it and being lonely -- these things were a terrible affliction. That my boy has reservoirs of strength whicheluded me, makes me so grateful. To him, to Lars and myself, to my parents, to all of his teachers and doctors and therapists -- the people who have formed him into the person he is.

Of course, kids like Benjy are always in flux. Next week, next month, he may not feel worthy even of living. And that is my constant fear -- that the pull of death will reassert itself. That Ben will remove the wax from his ears before I've had the chance to lash him to the mast. You can't survive the sirens' song if you're not tied to the ship's mast.

But tonight? He. Blew. Me. Away.

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!