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.*