Category: anxiety

Homeland Insecurity: Seeking Refuge from Ourselves

As a kid in the 1970s, I was shaped by current events like everyone else. A news junkie even then, I was glued to the TV:  Walter Cronkite, political conventions, Watergate trials, absorbed the details of the Viet Nam war, the Soviet menace, the Cultural Revolution, and the decline of America’s cities. Even though so much in the news was discouraging I was optimistic. I still was fascinated by government, I still wanted to travel the world (Nixon went to China – yes!), and I still wanted to live in New York City, bankrupt or not.

The only fear that took root in my heart was sown by Charles Manson and a murder case in which a local family was murdered in their beds on Halloween night. Random, hate-filled crime kept me up at night, paralyzed with fear. In an Iowa town where doors were always unlocked and keys left in the car, I drove my family crazy by locking all of the doors before I went to bed at night (as the youngest it can be assumed I regularly locked out most of my many siblings). I slept fully dressed sometimes, down to my sneakers.

My Mom hated herself for leaving the copy of Helter Skelter out on the coffee table that, with its graphic crime-scene photos in the center, triggered my not-so-latent anxiety disorder. She did everything she could to help me gain perspective, and, over time, the words of the Memorare  and Franklin Roosevelt’s  “we have nothing to fear but fear itself” lodged themselves permanently in my psyche. I recite them both regularly even now. Especially now.

DSC01780 - Version 2If the internet had existed then my head very well may have exploded.

And so what are we to do today, when the worst of humanity is on display 24/7? Plenty of people are writing about that. Understanding that electronic media is here to stay, I’ve tried to engage my kids about all that is happening so I can get a read on how they are managing the flow of information. It’s all a work in progress – I claim neither victory or defeat in the parenting wars. My kids seem to have a grip on what makes the current situation scary, but they are as confused as I am by how people who should know better are talking about it.

As an eleven-year-old it was understandable that, at one point, I feared the entire state of California because Manson was there. But my wise mother insisted on taking me there, plying me with Agatha Christie books for the plane ride so that I could see that most crimes were not random and that the perpetrators were caught and brought to justice – just as Manson and the local murderer were. It took a couple of years, but by age 14 I came to understand that I could safely exist in the world and that living with uncertainty was fine as long as it did not rule me. I grew up to attend a big city high school, leave home for college, live on my own and hold a job that required I answer security calls in the middle of the night in downtown Boston.

Why is it then, that my 14-year-old self seems so much more rational than so many people in positions of authority today? I came to understand that Manson’s insanity was not a reflection on the people of California, that most murderers have a coherent motive for their crimes, and that the political world is a complicated place in which what you hear on the news is, at best, only partially true. I even learned that people who run for President pretend to know things they don’t, and that being President bears little resemblance to running for President.

We have all watched events overtake every President when he entered office and seen them fundamentally change him – events that could not  have been predicted on the campaign trail. Nixon? Watergate. Ford? Being President and having to pardon his predecessor. Carter? Iranian hostage crisis. Reagan? Assassination attempt. Bush? Saddam Hussein. Clinton? Newt Gingrich and hubris (well, everyone should have predicted that). Bush? 9/11. Obama? Financial crisis and, well, this. Every modern President has had to face unrest in the Middle East, but none of them could accurately predict how they would handle it until they were sworn in.

Most Americans don’t have to dig too far back into their family history to find someone running from something. Religious persecution, potato famine, Nazis, war, poverty. People came here for freedom and shelter, and I don’t think all of them turned out to be model citizens; for every Dzhokhar Tsarnaev you can find a Sacco and Vanzetti. Every family tree has a bad apple if you look back a generation or two.

So why do we think that barring refugees from Syria – the few we have agreed to accept – is either justifiable or practical?  Plenty of Americans commit acts of terrorism against each other; how might we reduce the odds of that happening? Let’s see. Louisiana, Mississippi and South Carolina all have has a murder rates more than double the one here – can we stop the clearly untrustworthy southerners at the border of of my northern state? How is that less ridiculous than maligning an entire country or religion? What is the difference between opening fire on a theater in Paris and opening fire on a movie theater in Colorado? Mister Trump, we are our own Trojan Horse.

Hate has no home state – or country.

It’s not like the current refugee programs aren’t vetting the refugees from war torn countries who currently enter the US. The idea that up until now refugees from middle eastern nations have been flowing over the borders unfettered is preposterous. Even the translators who aid and protect US soldiers and journalists have a tough time getting the asylum they were promised. The current vetting process is long and security checks are required; it can take as long as two years (and once Congress is finished, will likely take longer). As reported today, of the 1800 Syrians who have been granted refugee status in the last two years, half of them are children and one quarter of them are elderly; only 2% are single men.

The governors and congresspeople say they want to stop the already glacial flow of refugees so they can look to see if our laws and procedures are sufficient to protect Americans to threats from abroad. But most of them are not the least bit interested in protecting us from the threats from our fellow countrymen. Regardless of heritage (or religion), there are more American citizens murdering other Americans now in the space of a year than terrorists have, ever. We all know there are few barriers to anyone who wants to procure an assault weapon in the US. I’m all for a review of the laws and procedures that affect our national interests and personal safety –  as long as gun safety is on the agenda.

I hope we can learn from history and look at the facts about what and whom we really have to worry about. Meanwhile, I’m saying a  prayer for the world.

Remember, O most gracious Virgin Mary,
that never was it known that anyone who fled to your protection,
implored your help or sought your intercession,
was left unaided.

Inspired with this confidence,
I fly to you, O Virgin of virgins, my Mother;
to you do I come, before you I stand, sinful and sorrowful.

O Mother of the Word Incarnate,
despise not my petitions,
but in your mercy hear and answer me.

Amen.

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A Little Less Preoccupied, A Little More Happy

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Sometimes the preoccupations, joys, and demands of this life – of any life – make friendships seem almost optional – something you can go back to when you have time and space after all obligations are met. I am guilty of back-burnering too many things and people that engage me in a positive way, even within my own house.

I withdraw to my iPad too often, looking for the news or posts that will push me a little further along in advocacy and giving me the illusion of being in touch with people. I am grateful for the ways my online exploits keep me connected to people I love, but sometimes it usurps the ones closer to home. That, my boy would say, is simply too stupid.

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Today, a bunch of little things went wrong but they led me to a place I was clearly meant to go, to see someone I always love to see. I came away with this bracelet as a reminder to be more deliberate about being a little less useful and a little more happy.

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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.

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The Age of Anxiety: Is This the Legacy of September 11?

Over the summer I asked an education professional if she had any insight into the increased diagnosis of severe anxiety disorders in teens. We aren’t talking about teenage angst – these are kids who can’t bring themselves to leave the house or enter a classroom. Her answer surprised me: “It’s the 9/11 generation.” I hadn’t thought of it that way before, and I don’t think I agree completely, but it’s an interesting theory.

One thing is for certain: the 24 hour news cycle and the widespread use of video and cell phone data made the sights and sounds of September 11, 2001, some of the most recorded and repeated events in history. I have to wonder if constant exposure to those images, along with all of the other disturbing and readily available content on the internet and cable TV, has created worrisome static in the minds of vulnerable children. Whether it creates the worry or amplifies it is up for discussion.

For my part, I have had bouts of worry since day one. If you took my life apart piece by piece you may or may not find events that fuel my worry, but I am convinced that the original spark was organic, part of my DNA. I was very young when I told my baffled mother I was afraid of both the dark and eternity as I played tea party on the floor near her desk. But I can remember the day my worry went from ember to bonfire with a single act when, aged 11, I picked up a copy of Helter Skelter from the coffee table in our living room, and read only the captions below the photographs embedded in the center of the book. They described in vivid detail the grisly crimes of Charles Manson and his cohorts against people in their own homes (none of the links here lead to those photos). What sent me into a tailspin was the randomness with which the houses and victims were chosen – the ultimate case of being in the wrong place at the wrong time. I stopped sleeping and started locking all of the doors in our big house in a small city. I stayed up until all hours watching the late show, hoping to fall asleep, only to be awakened by the test pattern or the national anthem. Lucky for me the late show in those days consisted of movies like The Old Man and the Sea and Jerry Lewis and Peter Sellers comedies. It took years for me to go back to reading books in bed, and when I did I took to reading the same books over and over – Gone With the Wind, The Long Winter, The Little Silver House, A Little Princess, The Lion, The Witch, and the Wardrobe. New books were only for daylight hours, and more often than not they were Hollywood biographies – glamorous and gossipy, the ending already known.

I’m willing to bet that the images broadcast eleven years ago today have stayed with some children more than others – why should they be any different than those of us who cannot forget that day and look warily at a too blue September sky? It isn’t as easy for us to protect them as it was for my mother to get rid of that book and replace it with more appropriate reading – she settled on Agatha Christie for some reason, probably because the mysteries were all solved neatly at the end. She was none too thrilled with my own choice of Judy Garland, Clark Gable and Marilyn Monroe books but those tales were less lurid than they are now, and in comparison to the Mansons they were almost wholesome.

My organic worry is still with me and I see it glowing beneath the surface in my children, but we have plenty of tools to help address it. Diet, exercise, prayer and sometimes medication and therapy all play a part, as well as a constant effort to beat back the media beast. I am grateful to J.K. Rowling’s Harry Potter for providing such sublime distraction via books and movies at this key period in history; it is an especially remarkable gift to the generation of children coming of age now. The TV and the internet allow us to revisit and access disturbing content but they also allow us to curate (and password protect) what we and our children see – I love that my middle schooler can fill up on recorded episodes of Good Eats, Dr. Who and Top Gear when he’s done with his homework (I don’t care to discuss Family Guy, thank you).

Real life, of course, presents fearsome challenges of its own that have nothing to do with media. For thousands of people it is the stark reality of the lives of loved ones lost senselessly and horribly (or in brave service as first responders) on September 11, 2001, and not just the images of it, that have altered their lives. We would all like to turn back the clock and not have known it, not have seen it, and protected our children from it. But just as the generations before us endured the tragedies of their times, we can hope that our sorrow and the worry it can engender allows us to learn in ways that bind us together – if we can just tear our eyes away from the screen.

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In Search of the Savant

HBO just produced an excellent biopic about Temple Grandin starring Claire Danes.  Grandin is a professor of Animal husbandry at the University of Colorado and has made name for herself for her innovative designs for humane slaughterhouses.  At first glance that might seem like an oxymoron, but her premise is that if we are going to raise animals for food, we need to treat them with respect and make their lives as pleasant as possible right up to the moment, as she says, “they become meat.”  Grandin’s designs come out of her unique empathy for animals and her ability to understand their visual and sensory perspectives, and she credits her ability to do this to her autism.  HBO’s film portrays key moments in Grandin’s life with remarkable clarity, not allowing the extraneous details of her childhood and family life infringe unnecessarily upon the heart of the story, which is the discovery and nurturing of Grandin’s gift for thinking in pictures and translating that skill into workable solutions for real-lfe problems.  Her voluminous photographic memory permits her to draw on virtually every single image she has ever encountered, and to process that information into something useful to her, and often, but not always, others.  She has documented her life well in several books, and she lectures far and wide at autism conferences, doing her best to impress upon families, teachers, doctors and researchers the importance of cutting through the sensory static and literal translations that can nag at the autistic mind.  Several years ago she was profiled in The New Yorker for her work designing the slaughterhouses, and I carried it around with me for months as an example at meetings and support groups, saying “this is what I want for our children with autism, for it to be both essential and secondary to who they are.”  Or as the movie’s tag line goes, “different but not less.”  Temple Grandin is extraordinary in so many ways, and she’s as energetic and industrious in pursuing the interests that drive her as well as the obstacles that autism throws up in front of her.  She can’t stand being touched by people so she devised a hugging machine that fulfills her sensory need for direct pressure; she has a sensitive digestive system and texture issues, so she eats lots of yogurt and Jell-O.  She is a fascinating mix of rigid and adaptive.

I hope that Grandin’s story will supplant the Rain Man imagery attached to autism even though I embrace the glamour and intrigue that comes with the concept of a savant as portrayed by Dustin Hoffman in that film.  It is impossible to say whether the person in that story would have benefitted from the kind of education that Grandin did.  There is no denying that some people are more hobbled by their autism than others, and that the gifts exhibited by some are more striking than others.

By the book, a savant is someone who is an expert, and in even today some append the term idiot savant to those who have dazzling gifts accompanied by startling deficits in other realms.  Many parents with children on the autism spectrum have had the maddening discussion with people who simply must know if their child is a math whiz, a brilliant musician or an organizational genius; I keep waiting for someone to ask about x-ray vision.  There should be a way to have that conversation without putting people in a position to justify the disability.  What the HBO version of Grandin’s story ignited in me is the realization that we all hope for an inner savant, in our children and in ourselves, and the beauty of Temple is that she has found a place where her inner world and the outer world that so confounds her can merge.

I understand that autism can manifest itself in ways that can be unsettling, disruptive and painful, but it takes only a small leap to see the universality of Temple Grandin’s journey.  Anyone trying to get a job, applying to college or thinking of a career change asks themselves the same question – what do I do well?  What is my destiny?  Why am I here?  Does anyone out there see the real me?  Some people go though their lives not knowing for sure if they found their niche.  Autism writes that problem on the wall in stark relief, and in that process presents some of us with a niche that finds us.

And, to extrapolate even further, it occurs to me that greatest moments in time are populated with people who nurtured extraordinary gifts in tandem with staggering weaknesses.  There is little room for mediocrity on the lists of Nobel, Pulitzer and in the annals of History.  And yet we strive for children who fit in, for people who meet the established standard of achievement, for uniformity and acquiescence.  To take a small but colorful sample, and because I have just finished reading the real-life potboiler Game Change, I cannot help but think of all of the politicians who are brilliant strategists and personal goofballs.  Bill Clinton is nothing if not a political savant, a Rhodes Scholar who claimed he never inhaled pot, and he joins a group of folks both brilliant and crazy in similar fashion:  Gary Hart (smart enough to change his name but not to stay off the Monkey Business?), Eliot Sptizer (pimp buster and escort service client), John Edwards (populist hero with the Armani labels ripped out of his suit), Mark Sanford (he tried to give back the stimulus money and he gave his wife half a bike for her birthday).  These people are almost autistic in reverse – social skills savants with a startling deficit in linear thinking.  I’m being flip, I know, but my point is that we take great pleasure in parsing the strengths and weaknesses of our public figures, so why aren’t we better at identifying the same things in our kids?  There are parts of autism that need to be managed, even fixed, but what we really need to do is mine the brilliance, harness the energy, bring more tools to the table that allow people with hidden gifts to find them, even if, for some of them, in the end, it just means ending some of their frustration and giving them some peace and happiness in a world that mystifies them.

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Cracked Windshields (2007)

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

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

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

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

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

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Tell Me a Story About When You Were a Little Girl

Many nights after we read together, my youngest child will say sleepily, “Tell me a story about when you were a little girl – one that you have never told me before.”   Sometimes I am hard  pressed to come up with a new one, but most times I amazed at how many events I can conjure up – many of them laughably short (“One time my father’s friend George helped us plant corn in our backyard – it grew but the ears were not big enough to eat. The end.”) but still enough to satisfy him.  I know that this is a ploy to keep me in his room long enough for him to fall asleep, and so I talk. . .

When I was small, probably four or five, I moved from the nursery next to my parent’s bedroom on the second floor of our house up to the third floor where the rest of my sisters slept.  Mom turned the nursery into her office, where I spent just as much time playing under her desk as I had playing there when it was my room.  They’d converted the third floor from an attic to bedrooms for their growing family.  There was one small bedroom with a door – a nod to my eldest sister, by then off at college – a larger dormitory room with four beds and then a third bedroom with a double bed through an archway opening off of that.  By the time I moved upstairs, people had shuffled around a bit and the large dormitory room was left to me and my sister B.  It was a sizable linoleum tiled room with a bank of floor to ceiling windows dormered out of the roof.  The windows looked out of the rear of the house and over the rest of the block and the neighborhood down the 11th Street hill.  From it I could see the roof of the little white house next door and the house beyond it, a fabulous, magical Victorian on the corner belonging to the W’s.  Painted a deep gray blue with white trim, I would sit for hours trying to imagine what was behind those gingerbread trimmed windows.  The W. children were all older than me, so my siblings had all been in the house, but by the time I was intereted, all of them had moved on and there was no reason to visit anymore.

The third floor windows opened on long, grooved wooden tracks, which created lovely breezes in summer but also made them rattle in the winter wind.  The train whistles that wafted through them in the night echoed loneliness and adventure, depending on my mood, but the bottom line was that those windows, so full of possibilities in daylight, scared me to death at night.  I felt exposed and far removed from all that was safe.  I wanted to leave the stairwell light on, which drove my sister crazy.  She couldn’t sleep with it; I couldn’t sleep without it.

 “You’re such a baby,” she said.  She was right about that.  I alternately relished and detested my place as the youngest in the family.  Though there is no question that there are many perks to being the last of many children, the cumulative weight of the experiences of the ten who came before me is not a simple burden to bear.  Being spoiled is not the same as being included, and being allowed to play does not teach you to play well or fairly.  Still, all of it was tempered in some way by love and attention, and I am still learning the value of those details as I try to look back and look forward at the same time.

And so, ‘fraidy cat that I was, on many nights I would wait until my sister fell asleep – or until I thought she was asleep – and tiptoe down the squeakish linoleum steps across the soft carpet of the second floor hall in to my parents room at the opposite corner of the house.  There in the king-sized bed my parents would be sleeping with their backs to each other, and I would scramble up from the foot of the bed, across the white coverlet that smelled of bleach to nestle in the valley between them.  I never recall them waking up and shooing me back upstairs, though I am sure there were times that they did, but I do remember bemused conversations in the morning about how I appeared there.

 Some mornings I would lay in their bed and watch my father as he shaved in the bathroom while the morning news was on the television.  There was a local voiceover guy on KWWL who bellowed “Good morning everybody!”  It made a good day a forgone conclusion.  And then came Captain Kangaroo, and Dad, in boxers and shaving cream, would come out and dance next to the television with dancing bear.  It was a magic moment.  Then he would come over and kiss me and I would swoon to the sharp soapy smell of shaving cream. Some times he would take the blade out of the razor and let me imitate him by putting shaving cream on my own face and swiping it off.

On other nights, it was not so much a desire to snuggle that sent me downstairs as abject terror.  I had – and still have – a recurring nightmare that was so real to me that it migrated into my awakened state.  There is a black rock, large and glistening, moving slowly and inexorably toward me.  Everything depends on my keeping that monolith from moving another inch, and yet, no matter how hard I try, it progresses, threatening to crush me in its path.  I remember scurrying to my mom’s side of the bed and shaking her shoulder, telling her in desperate whispers that I needed her help to stop the big, dark rock.   I was tiny enough that, standing up, my face was even with hers on her pillow and I had to reach up to rouse her; she was understandably  groggy and confused, but would cup her smooth dry palm around my check and chin and tell me to climb in and say my prayers and that my guardian angel would come and help me.  I didn’t want my guardian angel; I wanted her, my mother, the person who knew everything and could do anything.

I never turned to Dad at such moments, though I counted on him for other things.  I knew he would love me no matter what; I knew he would never ask more of me than I could give, I knew that the worlds we lived in were somehow different and the same.  I surmise now that he was ruled by a strange mix of fear and obliviousness and that my own greatest fear is sharing his oblivion, of not knowing and conquering my own demons.  My demons are his; my weapons for fighting them are hers, and so there is a battle royal in my head most every day.  And when I lay next to my boy and share my stories, I know that I do have a guardian angel and that she is winning.

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The Autism Beat – The Flip Side

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

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

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

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

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The Autism Beat – Living with Improvised Explosive Devices

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

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

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

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

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