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.

Photo Album: Sterling Fair 2012

On a clear day you can see Mount Wachusett. The Sterling Fair is just the right mix of rides (including our favorite, a real helicopter), animals, tractor pulls, arts and crafts, produce, art and baked goods.

Sheep whisperer.

Oh, and junk food, I forgot that one. I think I take this same photo every year. I love that cone.

Can I have this banner, please? I want to send it to my daughter at college.

Sharp shootin’.

No giant pumpkin this year (did I miss it?) but this is almost as good.

‘Merica.

Long walk.

It has been a raucous month. Graduation, orientation, parties, beach walks, visits from family, packing for camp, berry picking and even a Supreme Court decision that will go down in history. Now we venture into a July that will bring new things we can’t even begin to imagine and so I offer something comfortingly familiar – June 2012’s edition of a photo I have taken dozens of times in in every season. Few spots are more lovely than Steep Hill Beach at low tide.

On that day a few weeks ago when things were particularly crazy, we were walking up the wooded hill from the beach and as usual I was bringing up the rear, the rest of the family out of sight. Lost in thoughts of all that is to come, I rounded the corner and encountered an older gentleman making his way down the path. Long-sleeved open-collared white shirt with cuffs rolled up, khaki pants, glasses, panama hat. He smiled at me and said in a voice all too familiar,

“Long walk, isn’t it?” His voice had a bit of a midwestern accent, so “isn’t” came out like “idn’t.”

My voice caught a little as I replied,

“Yes, but a good one.”

He nodded.

I wasn’t sure if I was making it up by the time I reached my husband at the top of the path. He raised his eyebrows and said,

“Did you see him? It was your Dad.”

Yes, I think it was.

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!

The Oracle

I have been reading the letters that inspired – and continue to inspire – LettersHead.  She really was ahead of her time; Mom should have been a blogger.  Her words are inspiring, sweet, maddening, crazy, funny, wise.  The best ones are family updates with a little local history thrown in followed by “I have been reading the Encyclopedia Brittanica on [insert topic here]” with a page or two xeroxed and stapled to the letter.  When I read them now I can understand exactly the way she felt as she sat at the typewriter tapping them out, cigarette burning on the ashtray to the right, Hershey bar half out of the wrapper to the left. We may not be passionate about exactly the same things but in large part we are both driven to do what is right for our families and to express it, explain it and expound on  it early and often.  At least once she signed my name to a Letter to the Editor because she had met her quota for the month.

But a key thing I loved about her was that while on paper should could be relentless, most of the time in person, with the family around, she was such fun.  I so wish she had taken the time to write down the stories she spun after dinner – a little less L’Osservatore Romano and a little more Spy Magazine.  Both she and Dad had such great stories about the early and mid 20th century (their WWII courtship is a novel in itself) and they were good at telling them. I know that most of us (with some very notable exceptions) do not do them justice in the retelling.

I admit there were days when those postage-paid envelopes with the telltale IBM Selectric type address on them stayed on the counter for a bit until I was ready to open them – but I’m glad I did and I’m glad I kept them.

The Autism Beat: Artism

Last week our daughter asked our son, “What do you want to be when you grow up?” and, he said, “An artist.”  Until now the answer was always, “I don’t want to grow up.”  Breakthrough.  All parents hope that their children will find a passion, something they can and want to do with their lives.  It’s not always a vocation, not always a career, but something that creates a spark that, with any luck, turns into a fire.

Our extended family is blessed with talent of all kinds, artistic in particular, that has manifested itself in many ways.  Our home is filled with art by people we love, from paintings to photographs to greeting cards to quilts to books to magazine covers.  Some it of it viewed by thousands, some only by us, and so I think about where his desire to draw will take him because it is, in part, up to us to guide him toward his goal.

The world is full of artists who do other things so that they can pursue their art on their own time.  So few are able to fill their days and their bank accounts by making art.  And our boy is what people would call an outsider artist, pursuing what is, for now, a narrow, if vibrant, aesthetic that is not uncommon in people on the autism spectrum.  It has a childlike quality joined with a certain kind of exactitude that makes it appealing but not necessarily marketable.  And as much as that would be wonderful for him, it is the satisfying process of drawing and completing that we hope to preserve throughout his life; for every artist it is as much about the act of producing a bit of art as it is about having it when it’s finished.  Whether one works for days, months or years on a piece or is compelled to finish it in one sitting, the worst thing that can happen is to stop creating altogether.

Note:  the drawings here are older (about 2008), because more recently completed work is large or oddly sized and not easily scanned or photographed.

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.

Powered by WordPress.com.

Up ↑

%d bloggers like this: