Category: parenting

Cracked Windshields (2007)

Both of our windshields are cracked.  Each car dinged on separate journeys, the line making its way across in the cold and dark, a silver thread delineating a muted mountain scape, meandering across just below the line of sight we use when we drive.

My ding happened the night before I visited Melmark that November, and my companion looked at it and said you’d better get that fixed, it will spider and spread.  Noting the other ding on my side of the glass, I said, I am not in a big hurry – that one has been there since June 2005.  But exposure to the cold and snow of a night outside the garage in the snows of Vermont took the November crack and stretched it across the glass, to the point that I spent the hours travelling south to Rutland waiting for it to split wide open.  I trained my eye on the spot where it stopped, waiting for it to continue to the edge where I imagined a snap and a rupture on Route 107.  My eyes darted back and forth, eye in the crack on the left and following the churning white river on the right.  It is an interesting river, rocky and changeable, winding its way through the muted colors of the sloping green mountains, now more gray and black than green.  Aside from the occasional red barn, the whole world seems is in shades of gray, the mountaintops getting a sprinkling of sugar snow that we see as rain.  With each swipe of the wipers I wince, waiting for the silver line to extend and breach.

I annoyed myself by giving into the metaphor created by the fissure.  They tension, the duality, the precarious holding together of everything and still all of it as invisible, as transparent as glass.  Do I only imagine that a break is imminent or is it simply a part of life occasionally in need of attention and repair.  The tiny leak in the front living room window, the dead car battery, the dual cracked glass, do they are they cries for help or simply a life in need of routine maintenance.

He is treating me delicately; careful not to snap or blame, qualifying each observed problem with a judicious remark that it is no one’s fault, and I wonder if he observes the fault lines in me and knows that my internal plates shift easily now.  I am as tentative with myself as he is; confidence is fleeting, patience is hard won, joy almost non-existent, tears the most accessible.  All of the ingredients of happiness are there but they are frozen and refuse to mix and become the whole person for more than a moment or two.

I see the same suspended animation in him, too, (his glass cracked last week and he has driven to work today with his own silver fissure just below his eyes on the glass).  We do not discuss it but only hint at the cautious relief that the boy appears moderately stable on this Christmas vacation.  We watch him as a sailor watches a changeable sea, wondering how long the calm will last, knowing that the waters ahead are unlike any we have sailed before.  How to plan for the unplannable, how to respond to the lightning fissures of the autistic mind, how to stay poised for those and still respond to the vagaries of adolescence and anxiety that still form the other two. Sometimes it feels like we are fighting a war on three fronts and can barely resist the urge to run up the white flag – but then what?  There is no surrender beyond sleep and so we take that and hope that when we wake there will be a smile to greet us.

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Scaffolding

I’m a little slow on the uptake.  Yesterday it occurred to me that we have spent the last sixteen years carefully constructing scaffolding around our children, trying to raise them smartly, lovingly, safely.  And now, now that we are enjoying those revelatory moments in which they think things through, do the right thing, ask good questions, and fall in love with the outside world, we must watch them dismantle that structure that we built so carefully, and sometimes have an active role in taking it down around them.  I held on to a conceit that I could supply guidance and instill confidence when they need it, but now I see so clearly that there are steps – lots of them – they have to take beyond my view and that those steps include tasks I looked forward to doing myself that I must now entrust to others.  I knew that the process of building independence would be easier in different ways for each of my children, but I’m starting to realize that the person I need to build independence for is me.

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The Autism Beat – The Flip Side

Well, after making it sound like I live in a war zone I really should say why I love what autism has brought to my life.  Years ago, when I had an inkling that my life as a parent would be somewhat different than I expected, I plopped myself down at a friend’s kitchen table, and said “I don’t want this to change me; I don’t want to become angry; I don’t want to become the kind of parent that other parents avoid.”  Well of course it did change me and there are moments when I am angry and there are parents who avoid me, but I know all of that would have  happened anyway, regardless of whether I had a special child or not.

But what I didn’t know was that my life would have more texture and incidental joy than I could ever imagine.  That my child brings as much joy to others as we give love to him, that for every unexpected thing he does we learn something unexpected about ourselves.  We learned that it is impossible to parent any two children in the same way, that consistency is not about rules but about stability.  That believing what you say is just an important as the words you are saying.  That children often teach each other better than adults teach children, and that there are some children you can parent instinctively and other children that you have to seek help to learn to parent them well.  I have been quicker to understand and slower to judge, but less tolerant of those who might be quick to presume they understand me.

I learned to think in pictures, that emotions are a language unto themselves, that I can listen and speak with my eyes, and the practical value of being able to memorize dialogue from movies and TV.  I’ve learned the hidden language of touch, and that each person speaks it differently.  I’ve had spoken conversations for hours and gotten nowhere; I’ve made months of progress in a few moments of holding hands.  The two most important things in life are sleep and a sense of humor, followed closely by coffee and the internet.  With these things, I have found ways to help my family, stay connected with people I love, and found my way back to being the person I always hoped I could be.

When I look out from my life at the lives of others, I don’t see people who have it better than me – I see some people who think they have it better than me.  Everywhere I turn, people are still having mid-life crises, still worrying about their kids, still dealing with their parents (living or dead), still searching for something.  Sometimes I think people manufacture problems out of sheer boredom.  So, even as I struggle to create balance in my life, I am acutely aware of what I have and the bounty of my blessings.  Autism has given me the freedom to do what I think it right because there is no map for this life – I looked everywhere and I asked everyone and nobody knows.  That’s the gift:  the challenge of unraveling the mystery, of being able to write about it, of finding those marvelous people who speak our languages and who are on a similar journey, and who are laughing all the way with us.

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The Autism Beat – Living with Improvised Explosive Devices

A while back, someone sent me a link to an article that said that mother’s of kids with autism have the same type of stress as combat veterans.  This is not news, but it’s nice to have this kind of twisted validation.  I showed it to my husband, and he laughed and said “No kidding, we live with an IED.”  Exactly.  It’s the perfect illustration of what living with autism is like – you live under the same roof as an Improvised Explosive Device.  Just walking past – even a conversation with another person – can cause a freakout.  It’s like those phantom light switches that don’t turn anything on – some unsuspecting soul in China flips a switch and your child ignites.

To be fair, there are also parallels with living with teenagers, but with teens you can bet that eventually they will just give up and go to their room, or – better yet – stop speaking to you.  With just about any typical child, you can win the occasional argument, but that is not true with autistic people – if you decide that you are going to win they raise the stakes so high you have to rewrite the concept of what winning means- for you.  In our family we have dubbed this the Pizza Kid rationale.  Several years ago an autistic teen left his grandparent’s house and hid in the woods for five days because they had refused to have pizza for dinner.  Five days. He was never lost – he watched people look for him while he hid, and finally, finally got hungry enough that he didn’t have the strength to elude them any more.  You have to admire him for refusing to lose, but when it’s your own family, and for their own safety, you still can’t let them gain control.  So you barter – it’s really the only thing that works with anyone, but you have to be much more transparent in your motives because to people with autism it’s not about winning – it’s about keeping their world the way they need it to be.  Perhaps what is most unnerving of all is the randomness of it – the improvised part – what is crucial to them one day might not matter in the least on the next.  They need to control everything if they are going to survive, and you are the one who can provide the order they crave, or disrupt it.  So it has to boil down to life via contract – I will trade you this for that.  And even then there are times when they are so freaked out by the vagaries of life – bickering siblings, changes in schedule, bad weather – that they can’t even cut a deal, and the house of cards collapses – BOOM!

But there is a silver lining to this thundercloud.  You learn a lot about yourself and a lot about what motivates people of all abilities.  You learn the power of your own fear and the power of someone else’s, and that managing fear – yours, their, everyone else’s – is what 99% of your struggles with autism amount to. If you can find ways to keep either one of you from being afraid, of the world, of uncertainty, of each other, eventually, hopefully, you can put the flack jackets away.

The day after I drafted this essay the New York Times ran a front page story about a boy with high functioning autism who rode the subway for eleven days because he didn’t want anyone to yell at him.  This is not a closed topic.

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Revisionist Parenting

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.

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When the cat’s away, something breaks

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.

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Distracted Eccentric

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.

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Pink Paper

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.

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Toeprints on the Windshield

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.

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Magic Pebble

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.

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