Category Archives: parenting

Revisionist Parenting

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When I was nineteen I had a major crush on a boy I met at a summer job in Michigan. He was smart, sweet, earnest, funny and boyishly hadsome. We were inseparable for much of the summer but did not exchange so much as a kiss – it was fun; I thought it had potential. At the end of the summer we cooked up a plan to visit my family in Missouri before returning to our respective colleges. I knew my mother would like him, and she did. The feeling was mutual, I guess, because on the first evening at our house he said to me, ” When I met you I thought you were such a unique person, but now I realize that you are really just like your mother.”  I should have known at that moment that the romance was doomed; he entered the seminary the following year.

Fast forward twenty-seven years. My husband sits down in front of the family computer situated at the desk that I use, and looks at me and says, “Look at the way you have all of your notes and photos up on this wall and all of your papers here – you are your Mom.”   He is smiling – he loved my Mom. “I think you do it on purpose.”

Well, I didn’t; I don’t. I make rolls like she did on purpose, I speak truth to power like she did on purpose, I try to make my home welcoming like she did on purpose. But as my hair goes grayer and the questions from my children get thornier I find it maddening for it to be so hard to lift myself out of her ruts in my road – she did not overtly impose her ways on me and there are so many ways in which our paths greatly diverge.  I know we have faced the challenges on our lives in fundamentally different ways.   And yet, her influence is an incredibly strong default mechanism. It can make me frustrated, because in the years since her death I have begun to understand how she crafted the myth of herself by selectively sharing information with her children. But I also can empathize with why people do that – there are so many conversations that people will do anything to avoid. Parenthood doesn’t have a full disclosure clause, and the line between honesty and too much information is constantly shifting. When you share you risk two responses:  ”Why did you tell me this?” and “Why didn’t you tell me this sooner?”  I have been through this with my own children over the most minor events already, and perhaps I do share too much.  One person’s enlightenment is another’s burden, one person’s honesty is another’s pain.  You never know.

I witnessed enough drama in my Mom’s life to know that, as her youngest, I missed plenty. I wasn’t very good at letting those moments I did know about fade; I have a penchant for rehashing events in hope of prying out more details, reasons, answers. I keep looking for a version of the truth that I can live with, knowing full well that my ability to live comfortably with any truth changes from day to day.  What is acceptable in one moment is decidedly lacking in the next.  Sixteen years ago, I spent weeks camped out in my living room with my Mom, quizzing her about her life while we waited for my overdue baby to arrive. We covered a lot of ground, but I noticed gaps in her memory that I attributed to advancing age. It doesn’t really matter what she kept to herself, it is that she made that choice – repeatedly – that caught me off guard as the details emerged in later years after her death. He legendary candor was not what I thought and some of the things and people she put faith in were, to my mind, not worthy of her devotion.  She didn’t owe me full disclosure, but some examples she tried to set have not entirely stood the test of time, either, because she obfuscated.

But these things are true of all parents, all families.  For when we tell a story we are telling our own version, and that, by design or not, means that anyone else who was there as there may or may not agree.  We have a large family – something as simple as a Thanksgiving Dinner in 1975 can come off as Rashomon on steroids.  And I know that, quite often, there are plenty of good reasons to let sleeping dogs lie.  And so I struggle to calibrate what memories are rightfully mine, what traits I truly own, how I can understand what it is to write honestly knowing that truth in memory is only our own version of the facts at a particular moment in time.

I will always love and admire my mother, and there are many ways that I am glad to be like her.  Still, even in the throes of middle age, it is difficult to know where she ends and I begin, and I am reminded of what she said in the weeks before her death.  ”You’re going to be forty,” she said as she spoke of her terminal illness, “this is a good time for me to go.  It will be a liberating experience.  When your parents are gone you are truly free to make your own choices.  I never really felt like a grownup until both of my parents were gone.  It’s a good thing.”  Now, I think I know what she meant.

When the cat’s away, something breaks

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I go out of my way to make it seem like my husband’s business trips are fun for the kids and me.  We miss him less if we can break with the weekday school-dinner-homework routine.  We get takeout, make blanket forts, build Playmobil and train setups in the living room, become worse slobs than usual, watch black and white movies and have sleepovers in our bed (I steal his jeans and his pillow and I don’t have to worry about my snoring). 

But the house takes liberties of its own, kind of like the script of an Albert Brooks movie where everything goes wrong in the most eye-rolling ways.  The house lets loose all of those pranks it has been saving just for me – it allows the field mice in and sends them dancing up to the wall behind our bed, pops the lightbulbs in the most unreachable sockets, lures the woodpeckers to all four outside corners of the house, swarms the carpenters ants and termites, crashes a computer or two, breaks one major appliance, and finds never-before-seen ways to rupture the plumbing.  We are now at the point that, when the neighbors learn he is away, they call to ask if anything has broken yet.

And even though part of me thinks my husband has the power to set me up by conspiring with beasts and infrastructure, there’s nothing like a little drama to make time fly.  As long as I can marshall the courage and resources to make it right – so far my record is pretty good – I think it’s key for both of us to remember why we work better together than apart.  I feel liberated for all of about 15 mintes when he leaves, and then I notice the scaffolding of our lives tremble ever so slightly and though I get to snore, I don’t sleep quite so well.  Even so, I know that the house could come down around us, but the structure that counts is in fine shape.

Distracted Eccentric

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There aren’t any sidewalks in our area of town – people walk on the side of the road, and because New England roads are ridiculously narrow, I usually get a good look at the pedestrians I try not to hit.  One person in particular catches my eye more often than others.  G. wears a baseball cap and a windbreaker with a logo on it, a weathered look to go with his smile and nod as I drive by.  His graying hair curls out from under the cap, a little longish, his mustache, too, a little full.  When I first knew him fifteen years ago G. had a fresh from the barber haircut and clipped mustache, starched button down shirts, blazer and a late model Volvo.

G. is not a victim of hard times, but then again maybe he is.   He is a respected professional who surrendered his license for ethics violations – hubris and nemesis as writ in the early 21st century.  I am nosy; I read the public file on the case.  He was never indicted so it is impossible to say for certain whether he was guilty of poor judgment or something worse, but he made decisions that permitted illegal, sometimes dangerous activities.  It didn’t surprise me completely; he had always seemed bizarrely flip and distant.  He gave strangely vague answers to specific questions:  “What time should the kids be home?” “Whenever you get tired of them just send them back.”  Things like that.  It rankled me enough to tell my own children that they could only go to his home to play if his wife was there.  He didn’t come off as creepy, just as a distracted eccentric.

His sartorial evolution from professional class to working class reminds me that no life has a steady upward trajectory.  I empathize with him even though I am fairly sure he is oblivious to what anyone has ever thought about him.  His peaks and valleys are plain to see, but we all have them and we all try to spin them or hide them in one way or another as best we can.  Some people have the luxury of keeping their travails private, but like G., we cannot – we have a child with a disability, and in order to get him what he needs, we need to tell people more than we want to about our challenges.  It is maddening to have to sit across the table month after month and ask people to lower, raise and rework expectations for a mercurial child; to know that they think you can do better but that they are reluctant to do anything differently on their end.  They probably think I am a distracted eccentric.  The expression of fear mixed with pity is enough to send you to bed for a week.

But G. didn’t go to bed and neither have I.  He found something else to do with his life, and so have I.  Sometimes it means fielding looks from people who will never understand, but sometimes it also means wearing more comfortable clothes.

Pink Paper

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Fall 2009 - pink paperI heard a voice on the radio last week that sounded like a folk singer who used to work for me when I was at MIT.  It was an odd match – she was this tremendously talented woman in her 30s trying to pay the bills so she could pursue her art and music and I was an ambitious twenty something newly ensconced in a senior position in the President’s Office.  I was advised by one of my superiors that I was expected to prove myself with the subtle warning “not to let my slip show.”  So I hired Suzanne because she was bright and funny and seemed to understand teamwork, and I needed all the help I could get.

We both had a lot to learn, it turns out, and in the years since we parted ways I often think of her as I pursue organic gardening and alternative therapies because she was on the leading edge of these things way back in the 90s.  Me, I was on the leading edge of a nervous breakdown, and loving every minute of it.  I loved the meetings (it’s true, I love meetings), the policy discussions, the intellectual give and take of some of the most interesting and fascinating minds of our time – Lester Thurow, Paul Krugman, Bob Solow, John Deutch (pre-CIA), Francis Low, Philip Sharp – I only took notes on the discussions but I relished the immersion in ideas, and I gloried in taking it all down and getting it just right.

Suzanne was helpful in her wry way but clearly less enamored of the process than I.  Part of our job was to prepare for meetings, sending out agendas and prep materials and copies of the meetings notes.  To keep all of our groups straight (for us and for the members, who often sat on several committees), we coded the notes and agendas, assigning each committee their own color – yellow, green, blue, pink, goldenrod.  There were long hours in the windowless copy closet down the hall, and we had to lug our own colored paper with us each time we traversed the infinite corridor between our office and that room.  It was a pain.

Late one winter afternoon I dispatched Suzanne down the hall with a ream of pink paper to copy agenda and notes.  She returned with the notes, and each set had the first two pages in pink paper and the subsequent three in white.  There it was, my slip showing, a bit of white peeking from under the pink.  I didn’t handle it well.

“What’s with the white paper?”

“I ran out of pink and so I just finished them in white.”

“Are we out of pink?”

“No, I just didn’t want to walk all the way back to get more.”

“Well, we have to redo them so they are all pink.”

“You can’t be serious.”

“No, we really have to.  We cannot send out two-tone notes.  It’s sloppy work.  We just can’t.”

“You’re just going to throw away all this paper because it’s the wrong color.”

“No, we’ll recycle it.  The notes absolutely must be all in pink.”

“You’re going to WASTE all of that paper and time and work just so they can be all pink?”

“If you were worried about wasting paper and time you should have come back down the hall for more pink paper.”

We were both furious.  I made her stay late and redo it herself.  I didn’t even help.  It was then that I realized that I did not like being a supervisor and that I was not very good at it, either.  Eventually, Suzanne went on to work for a brilliant music professor and we parted on good terms.  After hearing what I thought was her voice last week (it wasn’t) I learned that she left New England to pursue her art and music and, from what I can see on her website, she looks well and happy, and I am glad.  She taught me a lot, and I drove her crazy.  Okay, maybe we drove each other crazy.

I still have pink paper moments all the time.  Moments where I would rather do things myself instead of harangue my kids, where I insist on things being done a certain way, and I still find myself wondering if my slip is showing.  I  reconsider that exchange where I demanded the recopying often, at those moments in which attention to detail may seem over the top but that the urge to do something – anything – precisely right is overwhelming.  On some days, doing the little things right is all I am able to get done at all.

Toeprints on the Windshield

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As we drove home from dinner last night in the autumn darkness I noticed something on the windshield through the sleet – little circles that caught the light from the oncoming traffic.  This morning I glanced over and confirmed it – five prints on the windshield, large to small, a perfect print of W.’s right toes.  On Mondays while we wait for A. to come out of guitar lessons, he often slips his feet out of his shoes and socks and puts his feet up on the dash, wiggling his toes and grinning up at me mischievously.

There is something terribly pleasing about putting your feet up in front of you when you ride in a car or train; I used to do it every morning and evening on the Commuter Rail from Cambridge to Concord, tucking my long skirt underneath me and wedging myself between the seats, my knees up on the one in front of me.  I now know that this designates me as “sensory seeking,” a person who seeks direct pressure from physical contact – heavy blankets, warm sweaters, snug turtle necks, bear hugs.  But is has to be just right and it has to be my idea or I become instantly claustrophobic.  This is where I find W. truly astounding, because even at fourteen he can climb on my lap and it is no more burdensome than holding a baby.  Even though I cannot let him stay there (for a multitude of reasons) it amazes me that he can totally get away with invading personal space and can position his body in a way that minimizes the impact of his weight.  Maybe we are sensory seeking in just the same way; we attract like magnets, quickly closing the space between us.

Magic Pebble

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We used to read William Steig’s Sylvester and the Magic Pebble every night.  It’s the story of Sylvester Duncan, a young donkey that finds a magic red pebble, and, faced with a fierce lion on his way home, Sylvester panics and turns himself into a rock.  His frantic parents look all over for him, but give up in despair after a month of searching.  They are reunited a year later when his parents lay out a picnic on the rock that is Sylvester, and happen to find the red pebble and put it on the rock.  Sylvester wishes successfully to be himself again and they all go on happily with their lives, saving the pebble for a time when they may need something more than to be together as a family.

 Whenever I read this story to our children, I find myself identifying with various characters in the story.  On some days, I am the mother and W. is Sylvester, hidden in the stone of autism, wanting to get out but locked in the by the spell of the pebble.  We are Mr. and Mrs. Duncan, haplessly eating lunch on the rock, wondering how we can possibly go on with our lives when the fate of our son is such a complete mystery to us.  On some nights, the story in my head ended there, with W. still trapped inside the rock.

 There are more dramatic versions.  There’s the Harry Potter version where Sylvester the Dobby rock starts hurling itself around, crashing into people and things, a possessed bludger that no petrifying spell can stop.  The wayward rock eventually wears itself out, but only after leaving most of the Duncans’ town of Oatsdale beaten and bewildered.  Mr. and Mrs. Duncan split a bottle of dandelion wine and dream of summer on the beach.

 Occasionally, I am Sylvester, trapped inside the rock, wondering how I got there and wanting only to sleep to forget how I got myself into such a spot.  The world moves around me, the people and seasons come and go but because I am a rock and I don’t look like myself no one knows I am there.  I am inches from the magic pebble that will set me free, but I am helpless to touch it or even be sure that it is there.  My parents are gone.  I cannot be rescued the way Sylvester was; there is no one to rejoice over my return so perhaps it doesn’t matter whether I am a rock or not.  But just as I warm to my mid-life crisis, I am touched by my magic pebble – it is W., reaching with two fingers to push up the sides of my mouth to make me smile.  And it is M., with a smooch that could bring the hardest granite to life.  And A., too, working her own magic just by reading her own book on the floor next to us.

 And there are magic pebble days, days in which someone or something brings our beloved W. back to us.  On these days the story ends just as it should; the boy I see and the person he is inside are one and the same and we inhabit the same world.  The magic is the love we share, in his friends, in the water and sand of the beach, and in the people who work so hard to make the world understandable to him and to make him understandable to us.  These are the best days of all, and as the years go by there are more and more of them, and that is a miracle I don’t need a book to help me understand.

Eyes of the Storm

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There is something singularly unsettling about having something as personal as a disabled child at the center of a public firestorm like the one about thimerisol and vaccines. Parents and scientists and doctors make complicated, impassioned arguments on either side. And in the midst of it all are photos of these children, standing still, their eyes fixed for a moment or an hour in the mysteriously clear, oddly beautiful gaze that is the hallmark of autism.

A child with autism, almost by definition, requires that parents enlist help from multiple professionals inside and outside their homes in order to give their child the greatest chance of success against this baffling disorder. Our private struggle, where it comes from and how we address it, is now a matter of public debate, and our gratitude for the attention and services that our children are getting is tempered by the knowledge that they signify a dangerous and mysterious trend that leaves us constantly searching and hoping for more information, better interventions and research that will discover a cause if not a cure. The price of that help, for those of us lucky enough to get it, is the very public exposure of our private pain.

Most of us take for granted that we can raise our families in the privacy of our own homes, getting our parenting advice from family friends, books and Oprah as we see fit, but once you have a child with special needs, your child becomes a line item on the school budget, the state budget and becomes part of the debate surrounding no child left behind. If you advocate for disability awareness, the newspaper calls and wants to put a picture of you and your child in the newspaper. In the name of forwarding the debate and getting funding for services and research you want to say yes, but for the sake of the rest of your family you want to say no. Your quest for something resembling a normal life takes on a whole new meaning as that pursuit becomes a media event; it is at once energizing and demoralizing because you are shouting to the now attentive world that you need help when what every parent wants is to be everything their child needs.

Every time some brave family allows their story to be told, a piece of yours is out there, too. You recognize the daily schedules, the alternative therapies, the trips to McDonald’s. The articles show up in your mail and your e-mail, and there is always a photo, and there are those dreamy eyes looking at or just beyond you. You read it sometimes warily, sometimes hungrily, wondering if that family is doing something you have done or should try doing, to bring your child into focus a little more.

And once you do speak out as a parent the quest feeds on itself. As the years go by you go to parties or functions and realize that you are almost incapable of talking about anything else, and you wonder if you are losing yourself to something different than the disability, and so you turn away from the public realm only to be met by those mesmerizing eyes and know that you have to fight for the child behind them.

There is a long history of crackpot theories about autism. Back in 1999 when I was learning about it, I read many articles that said that some parents are deluded into thinking that there is a working mind trapped inside of the autistic child, but actually the autistic brain really is empty. We all know now that they were wrong. Bruno Bettleheim said that uncaring mothers cause autism. He was wrong, too. Think of it this way: Those who look askance at vaccines are only following through on something many people do every day when they read a label on a food or medicine package. The labeling laws are there because we all agree that what is good – or at least not harmful – for one person may be deadly to another. Tree nuts, acetaminophen, lactose, and gluten all make some people healthier and other people sick, so why should it surprise anyone that there are some people who cannot tolerate certain vaccines or the preservative in them? Of course parents are at the forefront of the debate because we are also the ones riding the crest of the wave of the autism epidemic. Our futures as families with autistic children are already cemented – discovery of a cause or an environmental trigger will not soon reveal a cure – but there is something compelling in the hope that by asking the right questions we can reverse the trend.

And so we expose our turbulent lives to the extent that we can to the teachers, therapists, physicians, reporters, lawyers and politicians who can help us maximize our children’s education in the present as we try to build a future. We don’t have the luxury to entertain the parental conceit that we can make a life for our children that is somehow better than ours, for we are building a new world from scratch, one that will celebrate, welcome and soothe the vagaries of the autistic mind. The eyes have it.