Sunday, October 30, 2011

Rolling paper guns

I've been watching paper gun videos with Benjy on YouTube. The making of paper guns is an old obsession, and today it has reemerged. With an urgency we often see when Ben is in the grip of obsession, he ran around the house this morning, looking for tape and scissors. He sat me down and made me watch four videos, each at least four minutes long, that capture the delicate art of folding these agents of death. The irony is not lost on me. For Benjy there is no irony, only a kind of fervent besottedness.

We are not a gun family We do not own them, like them, find them very interesting. At least, we didn't until Bejny discovered their beauty. Lars has his own history with guns: during his compulsory military service in Germany in the 1970s, he was always the guy doing 100 push-ups as punishment for forgetting to remove the bullets from his weapon. (He was also the guy -- perhaps not the only guy -- who was always sleeping when he was supposed to be manning some phone or other overnight, waiting for urgent communications. Answering groggily the groggy guy on the other end.) Obviously, we are not a disciplined or militaristic family.

Here is an excerpt from an essay I am writing about Benjy, called "Benjy, Awake":

Benjy's is the only room that shrinks as his illness waxes. He crams the most
beautiful paper guns -- pistols, semis, the odd German rifle – into bookshelves, on
top of his dresser, his desk; he strews them on his floor. He lives in a fevered state
of creativity, but he only creates weapons. When he is not rolling and taping he is
watching YouTube videos about making paper guns. Who would have guessed
there is a whole subgenre of YouTube video: paper weaponry. Benjy had guessed.
He spends hours and hours watching maladjusted boys and men explain the
intricacies of rolling a double barrel, or constructing a magazine with paper bullets
inside. Then, after a while, he no longer needs the tutorials. He Googles certain
types of guns – how he knows what they're called I have no idea – and after
observing the original for five minutes creates stunning, intricate replicas out of
white paper.

I try to see the positives in these creative interludes. The irony is, he uses an
old draft of my novel about a mother who abandons her autistic son in a forest, to
construct the guns. Along their barrels you can read little jolts of anguish, lines
from the story of a family coming undone.

In spite of this fascination with rifles, machine guns and pistols, Benjy is the first to cry when we hear news of a death in Iraq or Afghanistan. He simply can't bear the thought of some other family's profound loss. So I accept the gun obsession with equanimity. I don't think he's ever going to use one to harm another person.

How wonderful his depth of knowledge about complex things, and his ability to see beauty in the most unexpected places.

Saturday, October 29, 2011

Funny conversation this morning...

Me: "Aunt Jackie has invited us to go to a stable today, with her and your cousins. Do you want to go and see some horses?"

Benjy, still in bed and sleepy: "Yes, I'd love to! And can I talk to some people?"

Me: "Ah, sure. I guess so."

Benjy: "You know, the people Aunt Jackie knows. Just to give them a warm hello."

Me: *beam*

Friday, October 28, 2011

Aspergian Rhapsody

There are so many things to love about Benjy that are Aspergian things. Like the way he owns every piece of information about surprising things. Ant wars in Texas, for instance. Or the reason why sloths are slothful (their diet, of course!), and where they live and what lazy-making things they eat. Or all the language that is used to describe what we do with and for computers. And how to solve problems of most sorts (except the mathematical kind). Encounters with Ben are generally  enlightening affairs.

But some encounters with Benjy are not. The rodent impersonation, for example, does not educate or inspire admiration, although it is good for a few chuckles. I used to think I needed to divert such antics, that other kids would take one look at him and think: loser! I used to assume I needed to warn him, "Only do that at home, or with people you trust." But he is smarter than I thought. He never, as far as I know, does the rodent imitation at school or in an unsafe place. And now I think differently about his quirky things. So what if he squeaks and chatters like a mouse, hands curled mouse-like under his chin, and some kid thinks he's weird? Or some perfectly-coiffed mom gives me a Look? I care if he cares, but if he doesn't, then let him be himself, "normalcy" be damned.There is something charming about that chattering mouse, and something absolutely endearing about the boy who channels him.

When Ben was in the hospital, I heard from one of the staff how he announced in group therapy that he has Asperger's Syndrome. The other boys expressed polite surprise. "Really, you do? I would never have known that."

To which Benjy replied, "Of course. Why do you think I'm so weird?"

"Weird" is not a word we have ever used to describe Benjy or any other person with Asperger's. (Although I will confess to calling Lars weird at times, especially in reference to odd things he eats. Lars can take it.) I laughed when I heard he'd said this, because I did not know what else to do. What I felt, though, was dismay. How sad that remark was!

I felt better when the staff member finished her story. What Benjy said next was this: "Yeah, I have Asperger's, and I'm a little weird, but the smartest people in the world have Asperger's, too. They're all scientists and programmers and stuff like that. Bill Gates has Asperger's."

I hope they were all impressed. I know I was. (Although I don't know if Bill Gates really has Asperger's. I would like to think that he does.)

Lars and Saskia and I have come to cherish the things about Benjy that other people might see as "off." The monologues you think will never end, but then, after eight minutes, they do. The way he emerges from his room in the morning with his shirt on backwards and inside out -- yes, he is halfway to twelve, and no, he doesn't care. These things make me smile.

Ben is so damned lovely, backwards and inside out. I like him that way. Because that's how I know who he is.

Joy School Redux

Remember that small, quiet, sensory-based school I mentioned in an earlier post, the one that is PERFECT for Benjy, and was deciding whether Benjy is perfect for them? Well, guess what?


He starts on Tuesday. Tonight is a night for champagne, cupcakes, and capers! Oh, Joy!

Thursday, October 27, 2011

A day of dark and light

Today was mostly a dark day at chez Delaunay. As a matter of fact, all of Boston was dark today: cold rain, charcoal sky, a sharp wind. But our darkness was twofold.

First Darkness: When Lars and I woke at six, it was dark as midnight, outside and in. Lars turned on our bedroom light, and just then we lost power.

"How am I going to get dressed for work?" I demanded, groping around in my underwear drawer and coming up with a pair of socks of indeterminate color.

"Oh," said Lars, "Do like I do. Just put on any old thing."**

** Editorial note: Lars is a habitual wearer of frayed, shabby, and slightly-less-than-clean clothes. I take his advice with a grain of salt.

Then the lights came on and I did a little happy dance and found some clothes. Then the power went out again and we were plunged back into darkness. Lars went downstairs to attempt making coffee and I woke Saskia, who groaned and told me to come back in an hour.

Benjy slept.

The lights came on, the sun rose, Saskia went to school, my work came and went. Lars left for his work and Benjy woke at ten.

Second Darkness: Benjy is a person of leisure. He is still without a school, and he is BORED out of his mind. Boredom rides tandem with sadness. He started his day with Prehistoric Park on Netflix. (VERY cool show, by the way. Any pre-teen boy will love it.) He moved on to My Pet Fennec Fox videos. Then he got restless, which escalated into agitation. And then he resumed the lobbying for an X-Box that has been his mission for the past month.

I am spineless, so I said, "We'll see..." And then I tried to go back to my grading. I have precisely two days (which is realistically about three and a half hours, when you consider everything else I have to do on those two days) to comment on twenty 6-page essays. And Gentle Readers, it is Not Going to Happen.

Ben left me alone for a few minutes. Slid into a posture of despair. Picked his fingers and buried his face in the sofa pillows. So of course I had to stop working.

Ten minutes before we left to pick up Saskia, I told him I'd buy him the X-Box. We absolutely cannot afford this. The bank will own that X-Box because it's going straight on our overdraft. But if I refused to buy it for him I was not going to get my papers finished, Unhappy students = bad evaluations, and bad evaluations, for the underemployed like me, = no job. I need that job. No matter that I learn poverty wages. Every cent of my paltry income is spoken for. More importantly, if I bought the X-Box there was a middling chance the darkness might break, the clouds disperse. I was ready to do anything for a little sun.

As we waited for Saskia in the car, Benjy asked me about Wall Street, and the occupation of it."What exactly IS Wall Street," he wondered, "and why does it need to be occupied?"

Oh, why didn't I make some silly story up? Why don't I ever learn? Instead of making a silly story up, I told him the truth about Wall Street. (You might have guessed we're Occupy sympathizers around here. If Benjy were not so off-kilter right now we'd be down there with the Occupy Bostonians every so often.)

The truth about Wall Street threw Ben into despair. He draped my jacket over his face and curled into a fetal position. His face went white and blank, as it always does when he is breaking down. When he is sad and broken. He told me life is not worthwhile, that it holds no treasures. And nothing I could say would bring him peace.

But things change, and fast. We braved the icy rain and acquired an X-Box. The darkness lifted. And now, as I write, Ben and Saskia are in the basement racing cars or flying planes or walking on the moon, for all I know. And they are happy together.

Let the grading begin!


There's been some talk about loneliness on this blog, particularly in connection with disability. And I was thinking about my own loneliness, and that of my son, as I drove to and from work this morning.

I am quite well acquainted with Loneliness, thank you, and I do not like Her. My loneliest interlude was during my first marriage. Five years of it. You see, I was passionate about certain things, and J-- was not. Nor was he a good pretend enthusiast about my special things. So, when we went to the opera (and yes, he does get credit for going) he mainly joked about getting a pair of glasses with fake eyes painted on the lenses, so he could sleep without any of those (evidently stupid) opera people noticing. He never actually listened to, or watched, or -- God forbid -- tried to appreciate, the musical/theatrical/visual spectacle unfolding before his eyes. Even when it was Mozart, whose operas are simply NOT SLEEP INDUCING.

Then there was the time I felt an urgent need to read him Oscar Wilde's story "The Selfish Giant." (Go read this IMMEDIATELY if you haven't already, and when you cry, tell yourself it's a completely reasonable thing to do. I will be there with you in spirit, happily sobbing.) I was reading away, all choked up, and picked up J-- in my peripheral vision. What he was doing did not inspire feelings of joy in me. He was glancing at his watch and stifling a sigh. He just did not get it.

 Not connecting with your significant other makes you lonely. So can parenthood, even though by definition you, the parent, are now living in close proximity to at least one extra person. Now, I'm not a lonely mom any more. Lars and Saskia and Benjy fill me and complete me, in all kinds of lovely ways. For me, the loneliness came when  I was a new mother. I had always lived a life of the mind, but the life of a new mother is emphatically a life of the body. I missed my intellectual life. At first I resisted this. When Saskia was one week old I read her The Tempest. Yep. The whole thing. My favorite part was when Prospero, the rightful Duke of Milan, tells his daughter, Miranda, how when she was a bitty baby they'd been cast away by Prospero's scheming brother, plunked on a ratty boat with no sails and launched out to sea.

Miranda says,                   Alack, what trouble
                              Was I then to you!

And Prospero replies,                O, a cherubin
                       Thou wast that did preserve me. Thou didst smile,
                       Infused with a fortitude from heaven...

I lovedlovedloved this. I would recite it while gazing at the sweet face of my baby, my cherubin, and think: I'm lonely but I am fulfilled. My baby will preserve me. And in so many ways, she did.

When Benjy came along I thought my life was too hectic for loneliness, but I was wrong. The thing about Ben that was most isolating was his difference from the "standard" way of being. He missed every milestone. Was creeping when he should have been walking (he never bothered to crawl). Was jargoning when he should have been talking. Was flapping his hands in a way that made other moms stare. The distance between me and those other moms was a palpable thing. I did not like it. And I think I did not like them, either. A sympathetic smile would have gone a long way with me at that lonely period in my life. There weren't many of them -- we were just too weird. The way I see it now, ours was a new normal -- and the world wasn't ready for us.

I'm not lonely anymore because I've found a community, in person and online. I cherish that community. I hope Ben will someday find his own community, so maybe the ache of emptiness will go away. I wish that for him fiercely, and with a mother's love.

Thoughtful insights from Laurel Collins, autism mom

I've mentioned Laurel Collins's blog here a couple of times, and it's linked on the sidebar. Sometimes she says what I've been thinking, but says it better than I ever could. Here are her beautiful reflections on mothering a child with autism:

 From Reflections: Parenting, Life, and Random Ramblings, Written by Possibly the World's Oldest 30-Something...

I didn't sleep last night.  Still reflecting on Andrew's doctor's appointment and the visit to his school, the sleepless night brought a realization.  No one can get what it is like to have a child with autism unless they themselves have been touched by autism, or a similar disability.  No, it's not the worst thing in the world, nor is it something which is terminal.  I totally get that many families have more challenges to live with than autism.  It's not like Andrew will die, yet in some ways it seems like a constant mourning process in concert with loving and celebrating him as I do my other kids.  His autism is never going to go away.

Who knows the "whys"?  I don't.  Was it the 5 day long hellish Pitocin induction?  Or perhaps the fact I chose one type of therapy over another when he was in Early Intervention, or allowed him to be "screened out" of EI at 16 months?  Or the abysmal special education services he received from perhaps well-intentioned people who simply didn't get him from 2nd-4th grade?  It does not matter.

The critical comments and judgement from some people is part of the life of parenting a child with ASD. (It's amusing that a common trait of these folks is they don't live with autism or similar challenges.)  People tell me, sometimes bluntly yet often not directly, how annoying, crazy, and awful Andrew is.  He absolutely is picky, but he is also a very good judge of people.  I only want to be around people who don't judge and who love him how he is- autism and all.

It's not like it's complaining.  This is life. The ups-and-downs of autism dictate what our family is able to do.  Long ago, I accepted this.  My heart breaks for a young man who deserves so much more and who is trapped in a body which has this disorder in every cell.

I've faced my share of challenges.  I've given birth to a preemie, been through an awful divorce preceded by domestic violence of the worst kind, and faced my own own health issues.  There is not a choice but to support my son and to live with the autism.  I try the best I can.  I don't expect much from others anymore as my experience is I usually ending up disappointed.   Too many people have let me down, and more importantly let Andrew down.  I pray that God gives me the strength to love and care for my child in the best ways possible for him.

Thanks, Laurel!

Wednesday, October 26, 2011

Tarantulas -- and Taking Care of Ourselves

Have you heard of a Chilean Rose-Haired Tarantula? I was asked to purchase one today (the new best friend candidate). I politely declined.

But this post is not really about Chilean Tarantulas -- or spiders of any nationality. It's about how we take care of ourselves. I'm referring to anyone, really -- not just parents of special needs kids, or parents of kids in general. How do we find a way, in this money-centered, work-centered, status-obsessed society, to simply be. To rest. To enjoy the things that give us pleasure.

I think in someways it's harder for parents than for non-parents, and harder yet for parents of kids with disabilities, to do this. The tarantula issue is a case in point: How many times must I field requests for animals, gaming systems, and other stuff (ten times a day? Twenty?) that will evidently fill Benjy's void, before I get to read a book, or a New Yorker, or write an email to a friend? To how many places must I drive Saskia each day (school and back, voice lessons, a friend's house, the library) before I can attend to myself?

Now, I'm not complaining. I love my kids immeasurably, and would do anything within my power for them, provided it's not icky or illegal. Okay, icky, but not illegal. But recently I've been thinking about things I would like for myself. (And feeling the usual guilt for thinking about myself. What a bore.) I have friends who work full time and don't have kids -- or have one easy, typical kid -- and they're thinking about the same thing. How can we take care of ourselves?

I think this question applies equally to men and to women, to stay-at-homes and to careerists. It's so easy to get buried in the mundane. You come home from work, or your partner does, if you have one, and suddenly it's time to shop for dinner/cook dinner/clean up after dinner. It's time to clean the toilets/litterbox/garage. And then it's time for bed, and you're too tired for anything but sleep. Add a depressed/behaviorally challenged/lonely/physically disabled kid into the mix and zowie! There's a you in there, somewhere, but s/he's MIA.

I don't have any answers to how we can find our MIA selves. For me, writing has helped immensely. I was a writer before I had kids (I've published a non-fiction book and articles, and short fiction under my real name) and I am still a writer. I will write until I die, and then I will write on the ceiling or in the basement, wherever I end up. I find it therapeutic, and whether I have to wake up at 5 a.m. or go to sleep at 1 a.m., most days I manage to squeeze some in. What I can't do, though, and feel sad about, are the following things: go to museums, concerts, the opera. Conduct literary research, travel, watch TV shows of my own choice (not usually, at least). Hang out with friends on a regular basis. Enjoy girls' nights out. Go to a spa. My life is too full of other things, some essential, some not, some accepted gracefully, some resented.

But I'm working on it. I may never completely get there, but I do have an outing to a craft fair with two dear friends and our three daughters scheduled for this weekend, and a Thursday evening dinner with my best friend. And therefore I am a very happy camper.

What do you all do to retrieve your MIA selves?

Tuesday, October 25, 2011

Joy School

No, I'm not blogging about Elizabeth Berg's wonderful novel (although maybe I should be). I'm blogging about the school we THINK is about to become Benjy's anchor.

I mentioned in an earlier post that Ben is currently without a placement. He is a boy who has never made it in a less restrictive setting. Mainstream schools and classrooms make him want to end his life. They make him a bloodied (literally, as in mutilated fingers and fiercely bitten lips), depressed boy. Although he is super bright (ask him about some crazy-arcane thing, like WWII German tanks or coding in Java, and prepare to be amazed), he has mostly learned on his own. Classrooms are way too stressful for learning. Sensory nightmares for a guy who can't take noise, chaos, and the unpredictable.

So, this new school, which is on the campus of perhaps the preeminent psychiatric hospital in the country, is like a dream come true. For Ben, and for Lars and me. Now I know what you're thinking. "Gasp! A psychiatric hospital? REALLY??" And my answer to that is: "Really." Benjy is a seriously psychiatrically involved kid. And this school totally gets him. We are waiting for a final acceptance, but based on the way things went today, I think he's in. And I am celebrating with a Diet Coke and four squares of Trader Joe's dark chocolate. Yum.

What was so wonderful today, apart from the sensitive, child-focused, and kind staff we hobnobbed with (we loved them all!), and the tranquil school setting, was Ben's way of being when he rejoined us after a couple of hours as a pupil there. There was a lightness about him. He was chatty -- we could hear him talking to the head administrator all the way down the hall. His body was relaxed. He'd had -- wait for it -- FUN! He'd played a MATH GAME that involved a lively and rapid calling out of answers, and he LIKED it. (You must understand, in our family we don't take kindly to math. We do it if we must, but we do it grudgingly. Lars maybe a bit less grudgingly than the rest of us.)

I tried to figure out the last time Ben had experienced joy, or something like it, in school, and the answer I came up with was: never. Not once. Not even a hour of it. There might have been minutes or even hours of okay, but never joy. Today I think he felt it. He's bummed out that he can't start tomorrow. (What??) And I, my friends, am waiting for that email telling me all systems are go. I think I will get it tomorrow or Thursday. I hope I will. I'll accept gratefully any and all third-party prayers that this will happen. And when it does, we are going to party (quietly) until the cows come home.

Monday, October 24, 2011


Today there's been a lot of laughter in our house. It's disorienting. Our typical mode is subdued and anxious (Benjy), eye-rolly, plugged-in, and teenager-ish (Saskia), overwhelmed and distracted (me), and At Work (Lars). We have become a Heavy Household, not corporeally but in spirit. So when Ben and Saskia sit together on the couch, watching Family Guy clips and giggling, snorting, and belly-laughing, and when they show ME said clips and my eyes go moist with the hilarity of it all, that's a good thing. I love it! And I wish for more of it.

When I was married the first time (yes, I'm on my second round), a friend pointed out that I never laughed. There was beauty in the world and I saw it, felt it, heard it -- it gave me pleasure -- but very little levity. Then I moved on, made a few relationship mistakes (the jazz drummer was a real low point, no offense to all you jazz drummers out there), and met Lars. And suddenly I was laughing again. It's a nice story, isn't it?

Now, I don't want you to think we never laugh around here. We do, sometimes. Occasionally we're downright silly. (Ben does a hilarious rodent impersonation. I mean it, it's funny. And Lars is a big goof.)  But there is a lot to worry about. I touched on the financial stress in an earlier post (and touched a few nerves in the process, as evidenced by the comments!), and of course there is the probability that Ben will do something to hurt himself (hit himself, pick his fingers or bite his lip bloody, stuff like that) if we're not vigilant. I worry that he will soon graduate to cutting (and yes, he does fantasize about that, tells us it's only a matter of time before he works up the courage to do it). I worry he'll fall apart, feel anguished/lonely/scared/angry, and I won't be able to pull him out of it. I worry because I love him so damn much, and I love Saskia and Lars so damn much, and I want our family to be happy and comfortable and safe. I want Saskia to not have to pay for her own lunches when she chooses to buy lunch instead of carrying, and to not have to pay half the cost of her class trip to Quebec.

"That's what babysitting's for," she says, the sweetheart. She does not want me to feel bad. But I do.

So we're not always laughing around here. But you know what we have? We have our health, at least for now. Our kids have the most wonderful, loving, and amazing Grandma and Grandpa who EVER lived (except for your kids' grandmas and grandpas, no doubt). They have wonderful aunts, uncles, cousins, friends, teachers and other supporters. WE have wonderful friends and supporters. And a great dog (he's a handful, though, I must confess). And some rockin' hermit crabs. Need I go on? Oh yeah, and it's getting cold and we have heat. And tonight I am making my famous chicken noodle soup. So here's the thing: as tough as things get, there are times, too, when all's right with the world. And this is one of those times. Today Benjy wants to live, and life is a pleasure. Yay!

What's going right for you? Comment, please! :)

A blog that rocks -- and a post that made me cry

Laurel Collins is an advocate extraordinaire. She is also one great mom, and a good friend to boot. While I hate to see anyone struggling (in the way that all parents do sometimes, and especially parents of kids with disabilities), it does help to know there are others in the same boat. Laurel's blog, and many others, as well as comments to this blog, make it abundantly clear to me that I am not alone.

This post on Laurel's blog just made me cry:

Read it, and then go give her a (virtual) hug.

Sunday, October 23, 2011

Emus, School, and Other Stuff

I am so delighted and moved that people have begun reading this blog, and that some have reached out to me in the comments area. For me, one of the greatest joys in life is connecting with people who empathize with what we go through around here, either because they, too, love someone who is struggling, or because they simply have a capacity for empathy and a big heart. Thank you for stopping by and saying hello!

Today Benjy announced that he has a new best friend. This best friend is an emu who lives at a nearby poultry farm. I find this to be in equal parts heartbreaking and hilarious. As so much of what he brings to the table is. The emu's name is Zaga, by the way. Ben used to call this particular emu "Crazy," but I guess as of today he's learned to appreciate Zaga for who he (or she -- I'm not sure) is.

I think many of us who parent a child with Asperger's or another autism spectrum disorder have witnessed loneliness. For Benjy, this loneliness is heavy. It weighs him down. He develops obsessive interests in various types of animals, begs us for weeks on end for a rat/leopard gecko/budgie/Russian tortoise. Because any of these animals could be the next best friend. It was only a few weeks ago that he tried to convince me a Russian tortoise was his ticket out of loneliness. He would love it so much, and it would love him back. It kills me to say no, but we already have a family dog, and Ben has some tropical fish and a few hermit crabs, none of which have filled his emptiness. So even if we could afford another family member I would have to say no, because where does it all end? Saskia is afraid he'll grow up to be an animal hoarder, and I guess I'm a little worried about that too.

And tomorrow will probably be a day of watching Youtube videos about parrots and cockatoos and budgies ("My Pet Macaw,"etc), because as of tomorrow, Benjy has no school, no hospital program. No place to be except home with me. This is because the placement that drove him to the hospital is off the table, and the partial hospitalization (i.e. day program) he was sent to after leaving the inpatient unit was exactly like the school that had driven him to suicidality (yet again). We have a found the perfect school for him -- a small, quiet, sensory-based program -- but they have not yet decided whether they want him. Until they do, we are treading water. Luckily (and unusually) we have an amazing SPED program in our town, with a principled and compassionate middle school SPED director, and I don't think the program's price tag ($90K per year -- ouch!) will be a sticking point. Our school district knows that if Ben is in a mainstream classroom he comes home with bloodstained clothes, the result of tearing the tips off his fingers and stanching the blood on his shirt and pants. That's what extreme anxiety can do to a child, ladies and gents.

But today was not a bad day, and he is sleeping peacefully beneath his weighted blanket. There is joy in a quiet evening, with no great sadness in it. We take one day at a time around here, and tomorrow is a new day.

The Price of Disability

I mentioned in an earlier post that we are Officially Broke. This is both accurate and hyperbolic. We are broke in the sense that we live paycheck to paycheck, and often dip into our overdraft (thank GOD for overdrafts!!!!). We do not eat out/frequent vending machines at work/buy ourselves much. Our kids wear clothes from Savers, where you can get six pairs of jeans and six shirts and a winter coat and a crock pot for $38. (The catch is, it’s all been worn or cooked in by someone else.) Lars and I do not buy our clothes at Savers, but then again we don’t buy clothes at all, unless something is too holey or stained to be justified. Then we wait until that and the next three stained and holey items are repurposed as “gardening clothes,” and with a sigh we make a trip to Target.
Things we do spend money on: violin lessons (Benjy), voice lessons (Saskia), limited (and cheap) summer camp doings (Saskia – Ben cannot manage summer camp). I spend more than I should on printer paper and ink cartridges. This is what I meant when I accused myself of hyperbole. We are broke but not, strictly speaking, poor. We do usually end up staring at each other in dismay as the month draws to a close, and I do frequently weigh the pros and cons of a week of Food Club mac and cheese for dinner (that’s the $.89 brand). But we own a decent if tiny house, and two functional if ratty cars, and we are neither cold nor hungry. I am so grateful for that.
No one signs up for being broke, just like no one signs up for a disabled child. But I bet if you surveyed families with disabled children you would learn that a large number of them have one parent who cannot work (unless there is only one parent, in which case it’s either work – somehow -- or welfare), a large measure of debt, and not much left over at the end of the month.
We are one of those families that has two parents but only one who is able to bring in much of a salary. Last spring I made the painful decision that work would have to be significantly curtailed. But work, for me, has been no more than simply a way to help keep our family afloat for a while now. Whatever aspirations I had – and I did have some – faded when Benjy’s autism took over; there was neither time nor energy for anything beyond meeting his needs.
I probably could have had a pretty good career. I’m an English professor, but I will never be tenured, or even tenure track. Benjy came along just when I was poised to snag a good job (book from Cambridge, one of the two or three top university presses in the world; articles in top-tiered journals. Lots of teaching experience, and students who loved me). So I gave it up. Soothed tantrums, oversaw therapies (30 hours per week). Emulated occupational and physical therapists. Tried to get him to talk. To crawl. Tried to help him. Mine has been a life of trying to help my son, to alleviate his stress, his anguish. Trying, now that he’s grown capable of all sorts of things, to keep him safe.
I cannot describe the feeling of having a child you’re not sure you can keep safe.
So work, and the perks of having expendable income, have once again almost entirely disappeared from my life. Thank goodness for Lars and his relatively stable job. Thank goodness Saskia babysits, pays for lots of her own stuff (and does not mind it). Thank goodness I have Lars and Saskia to help me through this complicated life. And most of all, thank goodness that we have Benjy still, and that there are still times when he can smile.
And yes, we are Officially Broke for the foreseeable future.

Saturday, October 22, 2011


So, Benjy came home from the hospital today. Not on a six or twelve hour pass, but for good. Or for now, at any rate. This morning I was beyond terrified. I took an Ativan and tried to go to the transfer station to donate some old children’s books, but the transfer station was closed. So I went back home and sat on my living room couch and tried the deep breathing exercises we learned from Benjy’s therapist. They didn’t help my anxiety much but they made me feel like I was swimming instead of drowning. Like something was actually happening.
On the way to the hospital I stopped at Starbucks for a venti soy vanilla latte. By the time I’d driven a half mile, I’d sucked the whole thing down. It was sweet and soothing. I will make a mental note to use venti soy vanilla lattes as a mental health strategy. (Lars will not like this, however, because we are now Officially Broke, and lattes are supposed to be a thing of the Past.)
Cleveland Circle was humming with the same assortment of college students/young urban professionals/oddballs that always seem to be traipsing between Beacon Street and Commonwealth Avenue, entering and exiting the Riverside T station, skipping their English Lit classes (Boston College lies a few blocks away), just hanging around. I glanced at those people as I cruised past, the students, the yuppies, and the oddballs, and then I thought about Ben. Would HE ever walk around Boston with friends, buy a yogurt at Chill, become a professional anything? (Maybe a professional oddball?)
And here’s the thing: nobody EVER goes into this parenthood thing with the expectation that their kid won’t make it. We all assume they’ll achieve on our level, and maybe even higher. Why should he be a professor when he can be PRESIDENT of NYU? (Notice I did not say Harvard. More on that some other day.) Or CEO of Google? We never say, Oh, she’ll probably suffer from selective mutism/panic disorder with agoraphobia/major depressive disorder, her whole life long (Benjy owns two of those diagnoses, by the way, along with a few others). Oh, he’ll probably be a picker/hair-plucker/cutter. He’ll probably be suicidal.
No. Those tendencies generally take you by surprise. And then you mourn the loss of that kid you thought you were going to get, who was going to be educated, employed, financially independent, married -- a mother or a father, even. Who was going to experience love, and sex, and joy on a regular basis. Who was going to support you in your old age, and who was going to be able to survive your death.
If Lars and I happen to die before him, what will happen to Ben? Saskia will have to take him. To keep him afloat, as we have done for the past eleven years.
You probably haven’t thought much about these things. Most people haven’t. But a few have.
So, Ben came home from the hospital today, and it was tough. There were a few moments when I wanted to drive him back there. And a few hours when I appeared to be okay but was internally weeping. I thought, I cannot do this, I can’t. Not anymore. He asked me why he could not be normal. Why do I always have to feel so anxious? Everything makes me anxious; I’ve been anxious my whole life.
What can I tell him? That we’re trying to help him, that his (yet again) new meds have not fully kicked in? (I want to go back to the hospital!) That we will do our best, would give our lives, to see him happy and well? I say these things all the time, but what the hell good do they do?
I cannot do this, I thought. But then, I did it. And after six hours of grief for the loss of his hospital, anxiety at being home, and general sadness, Ben let me show him a movie. And laughed. A lot. I slipped him his meds at 6:30 and he was asleep by 7:45.
He is peaceful in sleep. He deserves a break. We made it through today, and will see what tomorrow brings.

Benjy and The Striped Nickel

You might be wondering how this blog got its name.  When Benjy was of the usual age (12 months?) he acquired a few words. “Ruck” (truck). “Ma” (yours truly). “Ba” (ball). And then, he lost them. He would not speak again, except in his own alien language, until he was nearly three. This was a clue that he had autism.
But one glorious day, just before his third birthday, he did something amazing. Funny, too. He climbed up the stairs that led from our kitchen to our bedrooms, and paused on the landing. There was a triangular cut-out in the wall up there, and he often peered through at us as we sat in our breakfast nook, eating. And it was dinner time and he did not want to sit, so up he climbed. When he gazed at us through that triangle, it occurred to him to speak. And what he said was, “Ladies and Gentlemen, we have a striped nickel!”
Well. We looked at each other in amazed silence, Lars and Saskia and me. And then we started laughing. We giggled and cheered, and Ben felt very important, so he said it again, with appropriate gravitas. His first real sentence.
It took me almost ten years to realize what a striped nickel is. It’s Benjy, I think. And it’s really, really beautiful.