Care packages

What is it that gives people the gift of presentation? The dainty little packages of sweets that arrive from family – the way the cookies are wrapped and arranged in paper cups and tissue, full of fruit and crumbling butter and sugar, the way the bread and muffins hold together just right, topped with sugar that does not melt or become sticky and berries that hold together, saving their juice for the bite rather than leaking it out into the dough. It is more than flouring and sugaring, it is as though the ingredients know who is forming them and understands their responsibility to perform just so.

The birthday card constructed out of leftover mailbox letters and a paper bag, with a tiny line drawing that makes it suddenly, unexpectedly art. It is another kind of composition where mind and hand have instructed the materials perfectly.

Some of us can learn and copy the tricks, but imitation as flattery can only take us so far. Eventually we will be found out. When do we learn what we have inside ourselves that is organic, when do we know what we can do that is truly ours to give?

Time flies

Nobel Aspirations

If your phone ever rings at 5 a.m. in October, answer it. That's when they award the Nobel Prize and as this morning's news proves, you just never know, it might be you. Many Octobers ago my phone rang before dawn with Nobel news about two professors who won the prize in Physics. The call came from the Director of the MIT News Office, and as the Interim Assistant to the President of MIT, it was my job to know help him prepare to recognize and celebrate the awards such.

At a place like MIT, where 63 people have won the prize, people talk about Nobels like the rest of the world talks about a really great promotion - to people accustomed to extraordinary accomplishment, a Nobel is a distinct possibility, and some get to the point where they plan their careers around it. One gentleman declined the presidency of the Institute based on his expectation that he was a contender for the prize and that accepting an administrative position would hurt his chances. (He did win the Prize, eventually.)

So, given that this event was oddly commonplace and extraordinary, we set about honoring the winners while tip toeing among the winners (there are over 60 as of this writing) and losers that roam the Infinite Corridor. The President, intent on doing the right thing, asked me to visit the Dean of Science to invite him to the press conference honoring the winners. He specifically instructed me to walk down to the office and extend the invitation in person, rather than via phone or e-mail. I knew that the Dean of Science, an imposing and square jawed man with a laugh that reminded me of Beavis and Butthead, was still smarting from being passed over for the Presidency and then the Provost’s position. It became quite clear to me how much he was smarting when I asked to see him personally on behalf of the president and he did not only not rise from his desk, but only glanced briefly over his half glasses at me and inquired what I wanted. I felt more like a child in a principal's office than a presidential envoy, and was both terrified and furious. I extended the invitation as best I could and backed out of the office. When I told the President what happened he realized his mistake in sending a staff memer and, ever gracious, apologized for his colleague's behavior. The winners themselves were wonderful, one charming and affable, the other more quiet and dignified, but both humbled and delighted by the acclaim. I generally found this to be true; that those with the greatest accolades were the most gracious and rewarding to work with.

All of this came back to me this morning when I learned of the Barack Obama’s own Nobel phone call and his daughter’s reactions that this was a great way to start a long weekend. So many laureates in so many disciplines toil in quiet libraries and busy labs, driven by the pursuit of a single idea or narrative, trying to explain something that has never been seen or told before in quite the same way. The award may or may not come, but they work on, devoted to an ideal often only known to them. Those prizes are awarded for moving us forward in a way we might not have expected; they shine light into corners we did not even know were there, and the prize turns up the wattage for the world to see. But Obama has been awarded the beacon itself, and is asked to make good on his promise to further illuminate the world, to take his message of hope and make it a reality. Whether history with judge this as and enlightened choice or a colossal act of hubris we will soon see for ourselves.

You just have to learn to look in the right direction at the right moment

This photograph was taken while I was standing in the parking lot of a Wal-Mart in Lunenburg, Massachusetts, where I pulled in with hopes of getting some nice views. Behind me were acres of parking lot lined with tractor trailers and a number of parked RVs - truckers making deliveries and leaf peepers on the move. So, behind me, big box blight, and in front of me, a vison of New England worthy of Raphael's brush.

48 Hours in September

Opening Windows

Over the years I've taken hundreds - thousands, probably - of photographs of windows. I used to take days off from work in Boston and photograph all of the windows of the older buildings in Back Bay, the Financial District and at MIT. They give me a sense of place, I think, because once I have them I never know what to do with them, but they each have a story, real or imagined, and I suppose my intention was that sooner or later I would get around to writing it.

This window is in downtown Ayer, Massachusetts, and each morning as I drive through town, there are flocks of birds, Barn Swallows, I think, that swoop over Main Street again and again. Ayer is a town stuggling to reinvent itself after the nearby military base was closed, and sometimes I imagine that the birds are trying to breath new life into these too quiet streets.

Ayer looks a little like a Western town, with false facades on some of the buildings squaring them off at the top, and wide covered porches over the walkways. Fort Devens is where the Great Flu Pandemic of 1918 broke out, and I have read Groton's Town Diaries about the World Wat I soldiers who brought the virus and carried it far and wide, the deaths and quarantines and the great infirmary on the hill where the local folks went to recover. But that's another photograph.

Rocks in my Pockets

It was the middle of summer vacation at the end of an afternoon at Long Nook Beach in Truro. The sun cast long shadows and golden light on the low tide. Everyone was meandering in the surf and the tide pools and I was doing some meandering of my own up and down the beach, keeping everyone in sight, soaking up the final warmth of sun and letting the coolish water wash over my sunburned feet. Long Nook is not a good shell beach, and with boxes and boxed of Outer Banks shells languishing in my attic I had given up collecting all but the most unique shells.

Over the years my husband has always brought me bits of translucent beach glass in lovely hues of green, white brown and the rare red or blue; with the advent of recycling collecting the bits of colored glass has become more of a challenge. It is trash turned treasure. At first I saw it as litter spat back by the sea, but now I am charmed by the weathered surface of a shard of old Sprite bottle or the rare bit of cranberry glass. And on that day in 2006, the amber lenses of my sunglasses made the green tones in everything pop out, and, with no beach glass in sight, I began to pick up the greenest pebbles and drop them into the deep pockets of my hiking shorts.

After a long spell of patrolling the beach, squinting at the surf to watch everyone swim, it felt nice to hang my head, let the sun warm the back of my neck, look down and wait for something pretty to catch my eye.

In those days, and sometimes now, vacations could be exhausting. Even though it is good to get out of the stale routines of home life, breaking that rhythm creates the sort of tension with which I am often uncomfortable. There are too many choices and five people to keep happy, and they all have expectations and needs that I am compelled to meet. Most of the time I am exhilarated by the challenge, but there are moments when it rankles.

And so, with everyone happily occupied I allowed my mind to float with my eyes as I followed the tiny streams pulling the salt water back to the sea. I thought about my own childhood vacations of Midwestern swimming pools and city museums, about my Iowa born and bred father and his passion for the sea, about the gift of the Edward Hopper's light on these steep toasted dunes, about my mixed and intense feelings about the Cape. And with each new train of thought, a pebble made its way into my pocket. I considered that afternoon as it might form itself as memory in my children’s minds, about how it conjured all of the best things about childhood for my husband, whose very soul is fueled by salt air and sand between the toes, my desire to provide a hundred more days just like it to all of them and whether that might somehow assure that they are happy and fulfilled ten or twenty years on.

My pockets were getting full and heavy. I mused if I would be able to get up the narrow path to the parking lot with such a load in my pockets and a heavy beach bag and cooler. I worried how much longer I could carry around all of the stories without collapsing under their collective weight. I asked myself if writing them down would make me feel better or worse.

And in 2009 I finally have my answer.

I Love the Look of Neon in the Morning

The neon that rules the night fights the sun on a bright September morning. The messages of twisted tubes - Pizza, Billiards, Miller Lite - are all wrong, hung over, weak from being up all night. I understand their tepid response to the irrationally exuberant sun - tired, unshowered, and driving on autopilot down the one pothole-strewn road that the stimulus package is not repaving, I lament for the umpteenth time that I am not and never will be a morning person. The sunglasses I had made extra dark are still not dark enough today, but they let in those pale pink blue and yellow lights that catch my sleep speckled eyes, hinting that this glare will deepen into a golden day. By noontime I will be showered, busy and happy, and by dusk I will assess whether I have squandered one of the last lovely days before winter. And then maybe I will drive past the signs again as they take over the night gratefully and wish that I could go back and start over again.

Tsunami

It seems that most people

Hatch dreams

At the beach

But I have known

For a long time

That the beach

Is where dreams go to die

The wind and the water

They

Unravel

Everything

When the tangle of thought

And emotion

Is too tight

The beach is where I find them

Unspooling

That is where

I feel rage

And it dissipates in the wind

As I try to walk it off

And then

I think

No one will see how deep it runs in me

The beach

It has more broken things than whole ones

It sweeps what is fragile

Away

And dumps the remains back

Days weeks years

Later

Shells

Fish

Children

Societies

Refuse to treasure

Treasure to refuse

Paradise

To whom?

January 2005

Autism the Cause

An unpublished op/ed from 2006. Times have changed.

We learned to live with autism as a disorder, now we need to learn to live with it as a cause

I went shopping today after I dropped my children off at school. It was a tough morning; they were crabby, bickering all the way. So it was with relief and happiness that I went to do some errands on a gorgeous spring day. Our lives have been busy - we were all home for April vacation– so it was nice to meander through the store alone after a week full of kids, movies and too many French fries. When I got to the check-out counter, the gentleman at the register offered the woman in front of me a chance “to donate to a good cause.” I was ready to give, I thought, there’s always a worthy cause and I always give something: cancer research, Jerry’s kids, food banks, whatever. Except this time I saw the puzzle piece logo and I froze - the cause was mine. Here it was, a nationwide chain raising money for Autism research. I felt validated, elated, and profoundly ambivalent.

We have been shouting in the darkness about the autism epidemic for so many years that, now that the lights are on and someone is listening, I found myself startled and blinking. Suddenly, I felt exposed and vulnerable. It isn’t as though other causes have not touched our lives; we gave for cancer research before and after family members were taken by that disease. But it is hard to overcome that protective instinct that makes you want to shield your family from the scrutiny that comes with autism and its misunderstood history. It was almost easier to be the underdog because then we could keep it on a small scale; we could band together as parents and help our kids within our communities, and life would go on.

Autism affects families in vastly different ways, and so to have our son’s autism, which we have worked for years to make a positive force in our lives, become, by association, a full-fledged fundraising behemoth, perhaps we should expect to feel conflicted. Autism-the-cause does not describe my son or our family; autism-the-cause does not begin to touch the beauty and humor he has brought to our lives; autism-the-cause does not make us better or worse as parents but it does expose our family to a more public kind of attention, and more opportunities for understanding – and misunderstandings, as well.

And there’s a cynical side to it – now that autism has affected so many families of people in high places, autism is the cause du jour, just another ribbon, bracelet, or bumper magnet. No one really wants to be a bumper magnet – soldiers at war, people with cancer and aids, people with autism. Even as it raises awareness, which is a good thing, those magnets seem to me like a flip and cursory nod to issues so serious I would just as soon not see it on the back of a vehicle. But expressing that sort of vitriol about something an innocuous as a magnet is a kind of denial, too, that maybe things are not so dire that we need autism to be a cause.

But we do. Autism is a lifelong disorder for those who are disabled by it; they need assistance in communicating with and interpreting the larger world.

So, in spite of my reticence and thanks to the Herculean efforts of many, many people, autism has emerged as a full-fledged cause, and deservedly so. Money is desperately needed to research the current epidemic and to develop therapies and educational programs for this growing population of people disabled to varying degrees with varying outcomes.

On a morning when autism was, for once, not demanding most of my attention, it popped up and snagged me when all I really want to do is find a new book bag for my daughter. Now, just as I got used to autism grabbing my attention in the form of an 11-year old boy, I will get used to it grabbing my attention at the check-out counter. It is an adjustment I am happy and grateful to make.

John Updike has taken over my life

What to make of middle aged silences?

It seems that more and more of the conversations we do have are mere circles around the ones we should have. We have built strong and study scaffolding around each other in a sincere effort to support on another, noting our foibles and weaknesses. It is a respectful but tense silence, at least on my side, for I harbor a fear that I am going about things all wrong without a forum in which to sift through the contents my fertile and overactive imagination.

Some would say that that is what therapists are for, and in the wee hours and I lay worrying about the course of my life I think this might be true. But my time with therapists has been explaining rather than learning; and so far I have never left an appointment knowing once ounce more than when I walked in – all I have done is clarify my own position with myself. That is useful but it doesn’t solve the underlying problem. Friends are better if you can find them and make time for them.

Writing is even better.

I have spent an inordinate amount of time convincing myself that I am not an angry person, but there is no question that I am driven more strongly and specifically by anger than anything, even love. Perhaps it is time to embrace it, harness it, turn it into something practical. I have waited long enough for the moment when these things will come out, and if process the old things maybe it will improve my ability to cope with the present.

I know that this is in some ways the opposite of what I have learned with cognitive behavioral therapy, but I think there is room for both approaches. Mere acceptance of all things past is not possible for me, but accepting that those moments are over and that I cannot carry or assign blame for them seems like the right thing to do. And allowing myself to be paralyzed in the present because of the past is absolutely something that I need to overcome, and that is what brings me to the keyboard today.

How much of the past am I injecting into today’s silences, and hoq much am I projecting my own worries into other’s quiet? Plenty. But let me also add that women, for the most part, are faced with the questions of middle age head on and from the inside out. You can actually hear the doors slamming inside your own body and that is a process that screams for attention. The shifting tides of hormones require that we look at our choices and come to peace with them.

Men, on the other hand, have an entirely different set of circumstances. They harbor the illusion that they have the option to start over, that they can rend and discard the fabric of their lives and begin again. Women only think in terms of a new weave, of mending and patching, of adding new yarn and fabric. Of course there are new beginnings for both sexes, but this process that begins in your 40s is so much more concrete for women because the impetus comes from within; you can change or implode or explode. For men, it is all external. From the male perspective – and this is a sweeping generalization, to be sure - women, by all evidence, are going insane, the children are no longer cute and adoring, and the job market is narrowing. Retirement is no longer what parents do. They are trapped, and so they set about acquiring as much stuff as possible to show that they are, by some measure, successful. This is often in direct contradiction with the women’s desire to simplify their lives as they become overwhelmed with the job of caring for the stuff their husbands and kids are bringing home. But with the arrival of each new toy the women harbor a hope that this proves that he is not preparing to start over; that the convertible is fine so long as the only girl in the passenger seat is your teen aged daughter.

And then, like sunshine breaking through clouds, there are moments of surprise, where one of us makes an observation that reaches the other in an unexpected way. Like the man devoted to punk rock sharing a moment of opera that he heard on the radio. This man who never showed interest in that art form but who has a keen appreciation for excellence in any shape, has an understanding of the unique gifts that people are blessed with and can make something extraordinary. These are the moments that tell me I am in the right place, that those flashes of beauty, devotion, and revelation will find me no matter how far out to sea it feels like I am. That is where the person transcends gender and souls speak, and we recall and know what it is to fall in love more deeply than ever.

Sometimes it is hard to tell the difference between deference and giving in. Deference is more noble, more willingly practiced; giving in is done indulgently sometime grudgingly, it indicates that your idea was better but that you don’t want to fight or have already conceded defeat. Witnessing children duke it out shows that we learn giving in long before we learn deference; some people clearly never learn it at all, and they are the ones that keep score. So I am learning how to make those distinctions and chronicle things with blame and giving and sniping; I want the subjects of my stories to be treated with deference and still be true – to couch the sometimes chronic pain in terms that have no hint of score settling but really of story telling – I want people who are textured and earthy with ragged edges and inconsistencies and bad grammar. I will fight the urge to put gauze over the lens. With every short story I read I see the beauty in this economy of detail, and know that I will have to write a lot to pare it all down into something compact, tasty; weighty and still digestible.

I don’t even read much Updike – too flinty masculine New England for me, but the world he paints is so recognizable it almost hurts. Not almost - it does hurt, physically. I think all I can muster at this moment is my despair that the writing life is not one that I can survive within or survive without. I suspect I cannot chronicle this life, birth these stories without unimaginable pain. And yet the weight of the pregnancy is becoming unbearable, and I know that in time something good will happen if I will only allow it.

Eight years and counting

The eighth anniversary of September 11 brings cloudy skies, and rightly so. Unlike that blindingly clear day, everything is murky now. We are mired in a jobless recovery from a recession that snuck up on us, an no one seem to really know how to fix health care, and everyone is cranky about it. We expected that September 11 would change the way we live radically, instantaneously, but it didn’t - instead it visited upon us a long, slow, steep decline that we still fail to comprehend.

I remember calling my mother in Saint Louis as the towers burned. ‘I have been waiting for something like this to happen my whole life,” I said. “That’s terrible,” she replied. “People are jumping out of the buildings.” “I don’t mean that,” I tried to explain, “I mean that this is a defining moment for my generation. I always heard about Pearl Harbor, about the assassinations, about events that everyone else remembers happening with a sense of manifest destiny. And with that came an identity, a place in history that shaped how you look at the world in the space of a moment. Everything that happens from this moment on will be thought of in terms of before and after this day.”

I still believe that. September 11 set George Bush on a course for disaster but in a more roundabout way it set Barack Obama on a course for victory. If Bush (and so many others complicit in the march to war and financial ruin) had not been so terribly wrong, people never could have made the leap of faith that brought Obama forward. But where that leap of faith will take us remains to be seen. Will his eloquent hopes lead us to a sustainable future? Can one man cure a crippled legislature?

I think the mentality that there were terrorists at the gate created by September 11 allowed bankers to gamble and regulators to turn a blind eye. Like the 1920s after World War I, a war that was decimating a generation provided all the rationale required to pursue the high life. The post 9/11 world allowed the government and media to hype the beauty of having it now just at the moment that the generation who saw the danger in that philosophy was fading away. No one was willing to say no to anything except personal responsibility. Who knew what the future would bring; why wait when you can Buy It Now, just like on eBay.

And still, for every one of us that has reacted in fear and denial there are so many who have been humbled, who have worked to understand our responsibility to act thoughtfully. It is that appreciation, that sense that if we try to listen we can come to an honest conclusion about what is right for us, that brought us to the conclusion that is Barack Obama. We have so much history to overcome in this process. Not just racism but the politics of money, legislative and judicial inertia, and party organizations that no longer make any sense. Many a good public servant has fallen prey to the duplicitousness of friends and enemies alike.

September 11, the wars, and the Crash of 2008 robbed us of what little trust we had manage to recoup after Watergate and Viet Nam. Restoring it is a tall order for one man, but we have done more with less.

The August of Benign Neglect

Summer arrived too late and fall has appeared early. As Jimmy Carter once pointed out, life is not fair. Now that it is cool enough to take a close look at the garden I see that nature is making a mad dash to correct itself. The yellowed greens of September are showing the effects of a rainy July; echinacea and black eyed susans that grew too quickly once the sun appeared in August have flopped over in exhaustion, spent from the sheer excitement of a whole summer in a single month. And the day lilies, still confused by it all, are flowering randomly when they should have been finished in July. The zinnias fell prey to the Japanese beetles just as soon as they went in, and even the daisies gave up in disgust after weeks of rain. The tomatoes are trying to forgive and forget, this being my first year and all, but only the tiny yellow pear variety yields a daily bite or two, which I nibble for lunch (that way I don't have to share). The sedum, just ready to bloom, is swamped with bees while the lobelia saunters through in cornflower blue, oblivious to it all. See? I have brought you mums as a peace offering for not paying attention to you all month.

Double Solitaire

I wrote this a few years ago. Today is the seventeenth anniversary of my father's death.

The journey began simply, with a round of Go Fish. I was playing cards with my eight-year old daughter while her younger brothers paraded around the living room to Souza marches, wooden spoons in hand serving variously as batons, trombones, flutes and drumsticks. As the boys circled the sofa, we played our game. It progressed quickly; the cards had been poorly shuffled from the last game and she won. She leapt up to join the parade, leaving me to shuffle and put the cards away. I watched them march happily as I shuffled the deck and, without thinking, laid out a row of seven cards in front of me.

As I dealt the cards for solitaire, in my mind the cotton tablecloth turned to smooth polished cherry, the track lighting to a china lamp on my left and our dining room to a corner of the living room in our family house in St. Louis. Across from me I saw my father, playing his own hand of solitaire, deftly, seriously, quickly. It was the early 1980s and in those days we played double solitaire endlessly. He would play with anyone who was willing and as we sat in the delicate but sturdy cane chairs that my mother painted with pastel flowers on a black background before she married, the hours and the cards flew.

The games were fast-paced and good-natured but there was a frenetic quality to them.
It was the closest thing to exercise I ever saw Dad engage in (we used to howl at his morning calisthenics, which consisted of making tiny circles with outstretched arms and toe-touching that somehow never involved actually bending over). But when my turn was over and I observed him playing with my Mother I saw that he wasn’t playing, he was working.

Mom said he was learning to think again and she was right. The old ways of thinking and doing had washed away in a flood of booze, and now that the tide had receded he was repairing the damage, repaving the mottled roads in his brain. Decks of cards and stacks of encyclopedias and dictionaries crowded his side of the table and the library table behind the winged back where he spent his afternoons. When he wasn’t playing cards he was completing crossword puzzles, one right after the other. That’s how he filled his days during those early years of their retirement. He was learning to live again and he did it one puzzle, one game at a time. We bought new decks of cards when the old ones wore out and kept him supplied with crosswords and new, more specialized dictionaries for finding the right words: rhyming dictionaries, medical dictionaries, crossword dictionaries, thesauruses.

In time he turned his attention away from the cards (the puzzles remained, always) and began watching more television, which seemed like a step backward at first. He watched Wheel of Fortune and the Price is Right, Lawrence Welk and Hee Haw, and then, gradually, The Cookin’ Cajun and The French Chef. I had moved away by then and when I came to visit, it was he and not my mother who made dinner and traded recipes with me. The man who, throughout my childhood, hated onions and ate canned pears with cottage cheese every night was cooking with garlic, fresh thyme and sesame seeds. Hershey bars smeared with butter (no kidding) gave way to sorbet, oysters on the half shell and homemade soup. After almost 40 years of cooking my mother was thrilled to turn the kitchen over to him, and he gave me my first serious cookbook, Craig Claiborne’s New York Times Cookbook. It’s out of print now.

But those card-playing days started it all. They were his entry back into the family after years of physical and emotional absence. Typical of his generation, there was no twelve step process or open acknowledgement of alcoholism. Instead there was a new, carefully constructed companionship: rides in the car, casual meals out, shared books on history, stories told of World War II and a life lived mostly in small town Iowa. There was reading, punctuated by snoring, before the well-tended fire. And with his grandchildren he renewed the sweet rituals of our childhood with trips to the five and dime for treats and baseball cards, and long babies’ naps on his ample lap. Through all of the years he never lost his gift for calming babies.

Who is to say what makes someone withdraw for years at a time and then suddenly awaken? Watching him is as close a look as I’ve ever gotten to the door between this world and the one where depression stifles every impulse to live and connect. I sense it sometimes, the numbing sensation that makes me want to bury myself in the newspaper instead of tend to the responsibilities of daily life. That feeling of being wholly unequal whatever task life presents, however simple and achievable it may be, it is almost impossible to stop the sense of inner implosion once it has begun. Sometimes it takes an hour to ride it out, sometimes a day, sometimes a month. Only when I have emerged on the other side can I see where I’ve been and try to decipher what it was that brought me back into the light.

I observe Our Boy with autism and I cannot help but wonder if my father is lurking in the foggy netherworld that sometimes envelopes him. He inhabits both worlds at the same time and is somehow at home and a foreigner to each one in a single moment. I know that science will never draw a line between alcoholism and autism, but I cannot help thinking there is something about filling an inner void that characterizes them both. There are moments when I look into Our Boy's eyes and see my father looking back at me, hurt, bewildered, obstinate. To see Our Boy is to view human emotion distilled down to the essence, he knows the purest joy, the greatest sadness, the deepest confusion, the wildest rage, and all of them change as swiftly as the New England weather. There isn't any meanness and guile, though there is selfishness and manipulation, and this was so true of my father too. He wanted to achieve but he only really knew how to give and as a result he gave away most of what he had, and then some. It was only when his body began to break and the expectations were gone that he found the opportunity to seek and out and be who he was. I think that is what we will have to do for Our Boy – create for him the world where he can be. Ironically, perhaps, autism will give him that freedom, for no one expects him to be any more than he is, though we will fight his oblivion every day so that he can be free to communicate his needs to the world in hopes that they might be met.

We can try to give Our Boy what I could not give my father and what he was incapable of asking for. He wanted only to get along and be loved by those he loved, and in 20th century America that wasn’t enough. The rags-to-riches American dream eluded him, but he loved and was loved in the way that only the impenetrable Irish male can. His body and his brain succumbed to addiction and depression and when the physical pain cut through the numbness – when it was more painful to be drunk than sober - he dug his way out and started over. And lucky for him there were people there to meet him on the other side and play cards with him. When Our Boy is ready to play I will be at the table, waiting.

Bringing up the rear

I like to walk in front. I like to see the landscape spread out before me, to take in the whole picture, to set the pace.

But my legs are short and my husband’s are long; I am always falling behind. And while I like the momentum and I like to keep moving, he often stops to look at things. He has incredibly acute powers of hearing and sight – he sees the birds and knows their calls, he zeroes in on the slightest movement, his peripheral vision is incredible. I see landscapes and colors and shapes, swaths of color and movement and shape; he sees birds and bugs and butterflies.

When we had children and began taking them on our walks, he would lead the way with the baby in the backpack and was our family grew I became somewhat resigned to bringing up the rear. Part of it was that I simply could not keep up, either from pregnancy or fatigue or simply needing to see everyone to keep us all together. I have dozens of photographs of the backs of my family as we traversed one beautiful spot after another. There were many moments when I did not like the view because watching them, even as I loved them, did not allow me the freedom to escape into the landscape, to be the leader and adventurer, to set the pace.

But somewhere along the line things began to change. As the children needed less carrying and cajoling I could steal moments to take in the views on either side of me; I realized it was not so important to look straight ahead.

There are a few walks we take every year, and one of them is to the top of Indian Hill, which has a distant view of the Berkshires. It was one of the first walks we ever took in our town, and I have a photograph of my husband with our oldest child, relaxing contentedly in the back pack wearing red sneakers and a smile, and my husband, tanned with tousled hair in looking joyously at the September sun.

Over the last dozen years, the walks up this steep hill became benchmarks, taking stock of how well I fit into my role at the back of the pack. There were years when we fairly sprinted up the root strewn path, plopping ourselves down in the mowed meadow at the top for a picnic and some foraging for apples in the languishing orchard that rambles down the other side. When allergies made eating the apples off limits, my husband, ever curious and resourceful, noticed the milkweed plants ripening on the other side of the meadow and each September trip became a family mission to pop open the pods and liberate the seeds in to the blue, blue autumn sky.

Sometime the journey was painful, with one child or another intransigent, demanding to be carried, stalking back down the hill in rebellion, or sitting down and refusing to move. On those days I wondered why we bothered, what kinds of memories we were creating, feeling the need to sit on my own form of protest. We would set out from home on a self-proclaimed death march, three crabbily recalcitrant children in tow. For my husband, who is bound to office and computer all week, such walks are necessary to his sanity, a tonic for his brain, as essential to him as eating and sleeping, and he needs our company to make the experience complete, and often we do not live up to the expectation of family harmony. We allow him to work all week for us, and then we begrudge him his playtime; selfish, petulant children, including me. And so we walk, and once we get moving, we are always glad we did.

Our most recent walk up Indian Hill was different. Our elder son and daughter took the lead. We went in October, and so some of the fields that are usually tall with grass had been mowed. The paths were no quite so clear and so the kids took a few wrong turns. When my husband followed them I stayed behind to take photographs, and I did not worry that they would get lost or that I would be left behind. I knew they would be back. I knew my way, and I was confident that they knew theirs.

When we reached the top, the milkweed had been mowed under. We had nothing to do after we had our picnic, but my husband and our youngest, determined to find adventure, disappeared into unmowed orchard and emerged triumphant, their arms loaded with milkweed pods. The unfettered joy with which they flung the seeds into the air is an image I will never forget. As my husband’s fingers twiddled the loosened the seeds into the air, the downy seeds caught the breeze and transported them up the hill, where our son danced beneath them, caught them and set them free again.

We took a different path down the hill through the orchard, liberating milkweed seeds all the way, taking in the smells of the drying grass and the overripe apples, looking at crazy quilt of colors stitched by the autumn trees. As the landscape flattened out, the tall stalks gave way to a carpet of thick green grass punctuated by thistle. We stopped to marvel at the confetti of butterflies, large and small, doing their dance in the October sun. It was as though we had wandered into some secret confluence of the seasons, where every phase of nature puts on a performance. Butterflies for spring, grass for summer, summer heat and the milkweed dressed up as snow. We had arrived somewhere, it seemed after years and miles of walking, a place uniquely good and whole and complete. A moment in which each of us occupied a space that was neither front not back nor in between, but together, like a complete year of seasons.

Now that our walks in the woods, forests and beaches are longer and more diffuse I use my position at the back of the pack to walk with one child or another to talk, to try and see what they see, and sometimes to observe that the best walks are often the ones we are most reluctant to take.

Who knew heaven was in South Dakota?

Leave it to Pixar to trigger anxiety. The visually stunning style and sparse dialogue of Up turns out to have had a profound impact on my visual learner – to the point that Carl and his Ellie have turned into a giant metaphor for loss and death that has Our Boy covering every calendar in sight in hopes that he can stop the march of time. He keeps trying to delete the calendar off of my iPod and insists that there must be a way for us to get back to 2001 – if asked why he chooses to go back to that specific year he will not answer. I am trying to avoid putting my own spin on that one. Any four digit number prompts the query “is that a year?” in hopes that he can somehow manipulate the calendar to suit his needs. He expresses it quite frankly: “I do not want to grow up and die and go to heaven; I do not want all of the people dead and for the dinosaurs to take over the world.” Apparently there’s a little Jurassic Park creeping in there, too.

As luck (don't ask which kind) would have it we had a visit with a psychiatrist scheduled – not for this purpose but to help us better define the line between adolescence and autism – you’d be surprised how fuzzy that one is. Still, based on the usual performance at appointments of any kind, I did not have high hopes for this one; standard operating procedure for any doctor visit is laying down and going to sleep. This is Our Boy’s response to stress and you have to give him credit – it works. He has fallen into a dead sleep at Fenway Park and at any number of action movies. Total system shutdown.

But this time it turned out to be different. In preparation for the visit I told him that this doctor might be able to help him with what he calls his “worried heart.” The tale of Ellie and Carl had resurrected, so to speak, Our Boy’s own experiences with death, specifically the loss of both his own grandmothers and a neighborhood family that lost its grandmother two summers ago. Nana was a matriarch, a fixture at neighborhood parties with acerbic wit and a Tanqueray martini. She had a gravelly voice and a vast array of opinions; she taught her grandchildren to cook and play poker. Her late husband shared a name with Our Boy and thus she always and a soft spot for him and spoke very kindly to him, but she was memorable by any standards, particularly since his own grandmothers had lived far away and been less a part of day to day life.

Clearly, the prospect of understanding death and possible time travel made this an appointment worth staying awake for. Dr. J turned out be a lovely person with an easy way of speaking to children with communication issues – no big surprise since she is at the top of her field by any standards, but I had been disappointed by people touted as experts before. Autism is a great equalizer in that regard – people who are accustomed to impressing impressionable people who measure success by counting the degrees on their walls carry no weight with the autistic unless, maybe, they can also operate a steam engine or recite prime numbers to 23 places.

But Dr. J got Our Boy to talk about his worries about “becoming a skeleton” and going to heaven (so far we have completely avoided hell and purgatory). She got him to admit that heaven might not be a bad place, and asked him to draw a picture of it. I wish I had asked for a copy but I will try to describe it. He drew two wavy lines at the top and bottom of the page (“clouds”) and three stick figures who had heart-shaped torsos with wings sprouting from them. The circular heads had halos and smiling faces, and the center figure was slightly above the other two. “It’s Nana and the two grandmothers!” I thought.

Dr. J pointed to the center angel, “Who’s this?”

“My neighbor Nana.” She pointed to the second figure and peered over her glasses at him but said nothing.

“That’s Teddy Roosevelt” he piped up, as if there could be no other answer. I started to speak but squelched it.

She tapped the third angel “And this one?”

"Abraham Lincoln! They are all in heaven together? I will meet them all in heaven?” Many of his declarations come in the form of questions.

Turns out that to Our Boy, heaven is a lot like Mount Rushmore. Which explains why I am always finding images of that monument on my iPod.

It’s an exercise in forensic media and life exposure: this is what happens when the autistic mind mixes the following ingredients: a younger brother who is always reading books about presidents, endless viewings of Night at the Museum movies, a 2005 visit to the Museum of Natural History, National Treasure Book of Secrets, Jurassic Park, an election year (lots of shots of the Lincoln Memorial on TV), Up, and multiple experiences with death.

So, I wonder what would happen if we were to thrown in North by Northwest and Field of Dreams?

Eyes of the Storm

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.

The Curse of the Palladium Window

The house at the top of the next street over is for sale. Again. Built in spot where no one in their right mind would want to live - the driveway is so steep you practically have to repel down it if you are on foot and in winter requires nothing short of a Humvee. It is a four bedroom McMansion monstrosity built at the bottom of a steep incline next to a busy state highway. A spec house colonial with a palladium window slapped over the front door, the view from every front window is of the weedy retaining wall that supports the busy road 100 feet above. The other side faces a lovely little pond, but because it is a spec house none of the windows on that side were properly modified to take advantage of that view. Inside, real estate agent photos show a lifeless box with some nice wood floors and trendy paint along with the ubiquitous granite kitchen. No photos of the views because the windows are in all the wrong places.

This dwelling - if you can call it that - epitomizes the crass greed of the housing bubble. The developer sold it to someone coming off an ugly divorce in the midwest who thought she could redecorate it and flip it, not realizing that once the snow fell she'd be virtually housebound. After the bank foreclosed and sold it at auction in 2007 the second buyer still didn't understand how overvalued the house remained and how living under a highway would set her and her dogs on the slow and inexorable road to insanity. Eventually she put in some geraniums and put up the for sale sign.

I drive by the entrance to this house in a hole several times each day and cannot help but think of a person imprisoned down there - it's like Horton Hears a Who, I imagine a voice coming up from the pit: "We are here, we are here, we are here!!" Another strange thing is that both owners have been single people living alone. What gives with the four bedroom house for one person?

The whole thing feels wrong, and this sense of unbalance irks me every day because, well, this cannot end happily for someone, perhaps anyone, who chooses to live in this home. Whoever lives there is trapped in the cycle of bleak, icy New England winters, even darker down in the hole, and social isolation. Or if the house is left empty - as it was for over a year at one point - it becomes blighted and sad. It is either abandoned or for sale for over a half million dollars. The best fit for this house - as a starter home for a young family that can enjoy the water and make the trek up the hill - is unlikely because the outstanding mortgage is so high and the taxes are based on the pre-crash value of the house.

I want us to remake this house, this nation, on a scale in keeping with its place in nature. It could have been a little cottage on a pond; now it's an eyesore next to the highway and destined to stay that way.