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.