Putting Autism in its Place

There's more than one way to get lit
There’s more than one way to get lit

Autism Acceptance Month includes Light it Up Blue day, and people find themselves reminded, pummeled and delighted by blue lights everywhere. It’s hard to know how to feel about the hoopla when we try so hard not to let autism dominate our lives. That’s why I moved my autism posts to their own blog. To be honest, though, those were the posts that got the most hits when I began writing Lettershead back in 2009. Much as it would lovely to be vastly popular and widely read, Lettershead is about trying to keep some perspective and focus on ideas that are not directly informed by autism.

Autism casts a long, blue shadow, however. Sometimes it feels like I spent my early years escaping the shadow of alcoholism only to turn and face autism. It was good preparation, as it turns out. An anxious person by nature, living with an alcoholic taught me to be flexible and to live with a specific kind of uncertainty about what each day would bring. In recent years I discovered that if I replace the word “alcoholic” with “autistic” in the Al-Anon daily meditation book, it works beautifully, if not in exactly the same way.

The most dangerous thing I allow myself to do is look back and see the years in my between alcoholism and autism and idealize them. I think everyone indulges in this during a standard-issue mid-life re-evaluation. We see high school, college, single life, some point in our youth as something that slipped away accidentally rather than as part of a progression to a fuller life. George Bernard Shaw had it right: youth is wasted on the young. What I’ve come to appreciate by looking back is the value of the cumulativeness of my experiences. For all the randomness of my choices, they all seem to have prepared me for the life I have now, unexpected and unpredictable as it is.

Laurie Anderson said in a great interview with the New York Times that she has “zero time for nostalgia,” and that is a phrase I keep in my head because the world is changing so rapidly that I want our kids to know what the world used to be like without getting myself stuck there. In the process of talking about the past it also occurs to me that for all the good experiences we try to create for other people, we have no control over how they see or will remember it. I have no idea what my parents were thinking half of the time they were raising us, but it’s clear to me now that regardless of their intended blueprint, my own memories were built by me and there isn’t a lot they can do about it now. The reality of a large family is that there are as many versions of the truth as there are people. Our children haven’t even left home yet and they are already constructing versions of their childhood that bear little resemblance to the one I thought we gave them.

And autism? It is a changeable, petulant child all on its own. The disorder I learned about in 1998 is unrecognizable to me. I was not a refrigerator mother, my child’s brain is not empty, limited eye contact does not mean a lack of engagement, and we enjoy a level of love and empathy we were told was impossible. It morphs and changes along with the boy, advancing and receding on a schedule known to no one. It’s a cat, a bowl of Jell-O, a dish of mercury, a block of granite. I will follow it, chill it, contain it, haul it around, chip away at it – whatever it takes to deny it center stage. That’s the job, that’s my job, and every day it will change and still be the same. It’s not something I planned for, but I know it’s what I was meant to do.

Ten Signs I Have Clearly Arrived at Middle Age

I always wanted to do what my older brothers and sisters were doing; I couldn’t wait to reach the next milestone. Not any more. Here are just 10 of the  many facets of my rude awakening:

Does she or doesn't she? She doesn't.
Does she or doesn’t she? I don’t.
  • My mid-life crisis began at the same time as the financial crisis in 2008, but only one of them has ended.
  • I’m no longer prematurely gray. It’s just gray. All of it.
  • I used to explain pop culture references to my kids; now they explain them to me.
  • I have two kinds of contact lenses – one bifocal, one regular – but I usually just wear my glasses and squint a lot.
  • I use scissors to open everything. Everything.
  • I now like grapefruit juice and black coffee.
  • At the school play many people assume that I am there as a grandparent.
  • I would rather watch Downton Abbey than Breaking Bad.
  • I fall asleep during the first musical guest on SNL, regardless of who the host is.
  • The sweaters I brought home as keepsakes from my 80-year-old mother in 2003 are starting to look good on me.
Mom and me, 1972
Mom and me, 1972

Oh, yes,  there are wonderful things: children old enough to help out and talk about everything with, decades-old friends and memories, a whole lot of perspective about what matters, not getting carded. While I can’t say the same about myself, I think my mother was at her most beautiful when she was the age I am now. Her life was completely crazy then, I know now, but all I remember from that period was her confidence and style though my nine-year old eyes. And as the years went on she never shrank back, never gave up, always stayed current and engaged with the world.

If she were here today she would be glued to the TV, doing her own analysis and pontificating on the Papal conclave. One of my last memories of her, ten years ago, is of her watching the unfolding scandals in the Church and declaring that a new reformation was afoot – even in hospice she was doing color commentary. She wasn’t always right about everything, of course, but she was always interesting. In practically the same breath as she spoke of the Catholic crisis, she confessed to having a crush on Donald Rumsfeld. I hope I’m saying things like that when I’m eighty.

Do We Get It Now? The Joker is Real and Batman is Not.

Begin rant.

I have had it up to my eyeballs with superheroes. They were invented for 12 year olds to ease them into and out of adolesence, not to keep society perpetually in adolescence. We have the technology to do the harm that the villains do – and we use it. We don’t possess the super powers the heroes have and we largely ignore our own capacity to do good in favor of sitting, mouths agape in service to the glorified high provided by gratuitous violence and rampant disrespect for human life and dignity. Batman, as I recall, does not have super powers – he is mortal. He, nor anyone like him, came to the rescue when the Joker came to call in Colorado.

Are we learning anything yet?

I understand parables and fables and the constructs of fiction and I like special effects. I love movies, have always loved movies, have found tremendous solace and wisdom in movies. Movies are not an escape, though, if they don’t feed all the parts of your mind, and if you don’t do anything beyond the screen that comes from thoughtfulness. I realize the need for escapism borne of a poor economy and a real world punctuated by war and senseless violence. Back during the Great Depression the folks we now call The Greatest Generation turned to movies that shared their pain and lifted their spirits (The Grapes of Wrath, It Happened One Night, Public Enemy, 42nd Street, Top HatRed Dust, Rebecca), not sociopaths and explosions that stoked their anger and underscored their impotence. We have some lovely movies out now (Moonrise Kingdom) but they are not the ones that have PR budgets in tens of millions, midnight showings and top grosses (pun intended). We set Hollywood’s priorities with our ticket money and our internet hits – what are we telling them?

Yes, our leaders in government, politics and religion are failing us (and some of them are stoking our anger, too, with their politics of divisiveness, class warfare and hate), but maybe if we gave them the same level of attention we do these overwrought, overviolent and oversexed films they might have some incentive to get some work done. It’s not enough to weigh in about the latest cable news brouhaha – we need to  understand what is actually happening. It’s work. It’s important. It’s the kind of thinking that makes you mad in a good way. We desperately need heroes in real life, and we will not find them at the movies. We will find them in the mirror.

End rant.

Addendum: Ross Douthat from The Times weighs in.

When your birthday and Mother’s Day are always in the same week, it messes with your head a little

Yesterday one of my sisters sent me an early birthday e-mail that said “enjoy your last year of being the only sibling under 50.” Let’s just let that one sink in for a minute on this Mother’s Day. I have a lot of siblings (think Stephen Colbert) and my life has been punctuated by the rewards and trials of being the youngest in a large family (mostly rewards). Because I am the end of the line and my mother worried a  lot about being an older parent with a young child (every time she left town she would say, “Now, if I die…”), I do measure annually  how old I was when my mother was the age I am turning this year. If I were my mother, I would have an 8 year old right now. How lovely to have a sweet little second grader right now. How exhausting. I have three children and this is the first year I do not have to attend a spring concert and I am overcome with joy.  Mom, thank you for the science fairs and Christmas concerts and Girl Scout flying up ceremonies. And I want you to know that I totally forgive you for not coming to my junior high volleyball and softball games.  Most of the time I didn’t even want to be there myself so I didn’t exactly stew about this for 30 years but really, thank you for all of the stuff you actually made it to because no parent could possibly be prepared for the purgatory that is some school events – and then multiply the times you have to sit through it it by 10. You never know when one is going to count and give you that incredible moment, though, so I will be there for every one that I can get to that’s left for me. So thanks to my siblings for breaking Mom in on some fronts and making her paranoid on others and for reminding me that being the youngest is just as much of a mixed bag as it ever was. I love you all.

Look! Here is the hill I am almost over!

Roots & Bulbs

Spring is a month early and I am not complaining even though we have had precious little rain.  Having come late to the gardening party I have noticed only in recent years that each spring things sprout and bloom in a slightly different order.  This year the change is more dramatic:  the peonies are well on their way, even as the forsythia is in full bloom.  The tulips seem visibly annoyed to being pushed aside by the busy peonies; they are used to having the front garden all to themselves. The azalea, battered by autumn storms and with no snow cover to protect it from the winter wind, seems to have given up in exhaustion and pushed out only a handful of blooms from nearly bare branches.

I am always particularly glad to see the tulips. The red ones are the first to appear and the first I ever planted.  I put the bulbs in shortly after September 11, 2001.  Before then, my attempts at gardening were halfhearted and largely unsuccessful; our yard is so shady and the soil so sandy and acidic that no perennial I planted ever came back the following spring. But the previous owner clearly knew what to plant and so the garden she built always filled in nicely.  But there were a few spots near the driveway that got a little sun and seemed a little bare, and the events of that fall got me to thinking that I’d been living in our house like a renter – doing precious little to show any kind of long term commitment to a family home now buzzing with three young children. The crazy world (remember Graydon Carter announcing the end of irony?) and the empty skies of that September made me look up from storybooks and changing tables and brought me outside, and made me want to plant something beautiful, something hopeful, for the spring.

So I did.  And they bloomed, and have bloomed every year ever since (provided I remember to put out soap to keep the deer from nibbling the bulbs).  When the trees at the front of the house grew too big we had to take two of them down and that gave me more sun and soil to work with, and my perennial track record improved:  sedum, cone flowers, delphiniums, daffodils, iris, bachelor buttons, phlox, creeping thyme. A few years ago hyacinths appeared out of nowhere and they seem to be proliferating.  The original daylilies are stalwart and dependable as ever.  The hydrangea and the poppies are dubious and bloom sporadically.  The hollyhocks are a total failure. The shady areas still baffle me; the ivies are anemic and I am the only person I know who can’t grow hostas.

Last spring I took an inventory and ordered more tulips and daffodils to supplement my reds – I wanted orange.  The box showed up in late August for fall planting, at which time I promptly broke my foot and was relegated to the couch for 4-6 weeks.  My plan was to get them in just after Halloween, but when I went to plant them the box was in the recycling, empty.  My husband had come upon them and handed the box to my daughter and told her to plant them, which she did, grudgingly, with little attention to where.  So all winter long I waited to see if and where they would come up.

This week, they emerged – a few here a few there, some in groups, some in rows, some in places where the deer dined on them so I don’t even know for sure which ones they are.  It isn’t the way I would have done it – it is better, creating a haphazard path of blooms up the front walk, starting with my 2001 tulips.  Nothing at all about this whole operation went according to plan but it all seems so right – this is her senior year, and these are her tulips that she planted at the only home she has ever known. Next spring I will cry when they come up and send photos of them to her at college which will delight and exasperate her.

It is only now, as I type, that I recall my own mother hovering over her tulips in our back yard in Saint Louis, and how the entire city seemed to be swimming in them the last time I went to see her in hospice. Saint Louis sees spring much sooner than New England so that visit was, for us, like Dorothy emerging from the back and white of winter to full technicolor spring. It was an intensely sad and joyful time, punctuated by tulips. Every time the deer snack on them I swear I will not plant any more, but I don’t think I can stop. Not now.

1919-1992

Today is the 18th anniversary of my father’s death; my mourning has come of age.   The hot days of summer bring back all kinds of memories of him and playing them back and filling in details is a process that seems to dominate every July.  As much as I love him, most of the years we spent in the same house would never make a highlight film of his life.  And as much as he loved me, I am haunted by the bittersweet feeling and misplaced sense of responsibility that there are people and tasks that merited his attention and did not get it.

Depending on how you look at it I was in both the right place at the right time and the wrong place at the wrong time.  Appearing late enough in his life that I offered the joyous, no-strings-attached love of a little girl when such attention was in short supply, and in return I got the attention every small child craves from a parent.  My late arrival also afforded me a front row seat to a mid-life bout with alcoholism whose confusion scattered our family in untold directions.  I found myself adrift and distracted in the eye of the passive aggressive hurricane that characterized my parent’s marriage at that time, my allegiances shifting daily and instilling in me an unsettling certainty that there is no such thing as the whole truth.

His story ends well, with beloved grandchildren, an embrace of cooking, work and friends in the community, and a rekindled friendship with my mother.  She liked to say that the first 15 and the last 10 years of their marriage were worth all that happened between.  As it happens, what happened in between was my childhood. While I maintain that it was a happy one, I find myself sorting through it like a jigsaw puzzle, trying to make the brightly colored, oddly shaped pieces fit.

The inequalities of parental love – or any love at all – are tough to reconcile, and because I have witnessed in other families the carnage that can result when people attempt to settle old scores, I find myself overly focused on fairness and communication with my own children, knowing full well I have no control over how they might view their lives, and my role in them, fifty years on.  But what I carry with me is the sense that my parents, my family, have loved me the best they can, and that I should lift my head from the puzzle and work each day to return the favor.

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