Happy Birthday, George Washington

Another great conversation with our boy. 

A voice wafts in from the living room.

“Mom, today is George Washington’s Birthday.”

“I know.  How should we celebrate?”

“I will speak to him with my heart.”

I overhear a whisper.

“Happy Birthday, George Washington.  I hope you are having a nice birthday in heaven.”

He comes in to see me.

“I told him to have a nice day with my heart.  I hope I didn’t disappoint him.”

“How could you disappoint him?”

“I don’t want him to think he is not in my heart anymore.”  He pats his chest.  “He’s still there, nice and safe.  I won’t forget him.  Or Lincoln, either.”

“I know they are both very proud of you.”

He sighs. 


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.

The Engines Have Boilers for Hearts

Inside the heart of every autistic boy floats the Island of Sodor.  I read once that the only universal characteristic of autism is a love of trains; this theory may have changed but I certainly have found it to be true, and Thomas the Tank Engine, in particular, with its distinct expressions, concrete plot lines and happy endings, seems to capture and hold the hearts of these kids.  It is in this context that I had the following conversation this morning:

Our boy brings me the iPod and puts it up to my ear – the music is Hark the Herald Angels Sing from A Charlie Brown Christmas.  He is grinning.

“This makes my heart happy,” he says.

“That’s church music,” I note.

 “I know,” he says, “Sir Topham Hat and the Engines like it.”

 “What do they do at church?” I ask.

” They pray.”

“To whom?”

” Jesus.  They pray over the dead people.”

 “What else?”

 “They get married.”

 “Does praying make their hearts happy?”

 “Yep, and their boilers, too!”

 I laugh.  He becomes very earnest.

 “The boilers are their hearts, Mom.  The engines have boilers for hearts.”

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.

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.

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.

The Loneliest Holiday

When I hear about loneliness on Thanksgiving, it breaks my heart, even more than Christmas. It’s kind of a Hallmark Hall of Fame sentiment, I know, but I always think of everyone as someone’s child on Thanksgiving, and that their Mom and Dad never intended for them to be alone. I know it happens, and often, but it’s still a shame. There are no presents, so the economy shouldn’t be a big factor; it’s just food, there is no excuse for being alone. Children grow up, families scatter, it’s cold and people don’t want to travel. There is something to be said for staying under the radar some years. But people can get stuck and forget how to resurface. I am most troubled by those who think the world has given up on them, and they are somehow destined to loneliness even though aloneness was all they sought.

As I was falling asleep the other night I heard a voice on TV say something like, “short of real tragedy or a felony, these holidays that we bemoan make up some of the most interesting moments, the best stories, of our lives”. There are people out there, people we know, and they, and their stories, are waiting to be found and treasured again.

Happy Thanksgiving.

Winter Storm Warning

I know it’s getting to me when. . .

  • I look at my calendar and try to think of reasons to get out of every appointment on it.
  • I tell everyone on Facebook to put out their flags for Veteran’s Day and promptly forget to do it myself.
  • My family has to get their clean underwear (and pretty much anything else) from the huge pile of unfolded laundry in the corner of my bedroom.
  • Making the bed means the bedspread is pulled up over the pillows.
  • The fridge looks like my Mom’s – four cartons of half and half (two open), three half-empty bottles of ketchup, six pounds of butter, eight kinds of salad dressing, three bottles of beer that no one likes, cheese with sell by dates from last June and no milk.
  • I don’t care if W. takes his stuffed Wallace & Gromit sheep to the restaurant and gets an extra seat, napkin and menu for it.
  • I stop watching The Daily Show and the Colbert Report.
  • I do all of my reading online.
  • I am more interested in my Farmville Garden on Facebook than I am in my actual garden.
  • Salad consists of lettuce and cucumber.  Every night.
  • I don’t like answering or talking on the phone.
  • I give one-word answers to questions:  “Okay.”  “Fine” “Thanks.”
  • I avoid opening any e-mail with “autism” in the subject line.
  • I buy a whole pomegranate.

Distracted Eccentric

There aren’t any sidewalks in our area of town – people walk on the side of the road, and because New England roads are ridiculously narrow, I usually get a good look at the pedestrians I try not to hit.  One person in particular catches my eye more often than others.  G. wears a baseball cap and a windbreaker with a logo on it, a weathered look to go with his smile and nod as I drive by.  His graying hair curls out from under the cap, a little longish, his mustache, too, a little full.  When I first knew him fifteen years ago G. had a fresh from the barber haircut and clipped mustache, starched button down shirts, blazer and a late model Volvo.

G. is not a victim of hard times, but then again maybe he is.   He is a respected professional who surrendered his license for ethics violations – hubris and nemesis as writ in the early 21st century.  I am nosy; I read the public file on the case.  He was never indicted so it is impossible to say for certain whether he was guilty of poor judgment or something worse, but he made decisions that permitted illegal, sometimes dangerous activities.  It didn’t surprise me completely; he had always seemed bizarrely flip and distant.  He gave strangely vague answers to specific questions:  “What time should the kids be home?” “Whenever you get tired of them just send them back.”  Things like that.  It rankled me enough to tell my own children that they could only go to his home to play if his wife was there.  He didn’t come off as creepy, just as a distracted eccentric.

His sartorial evolution from professional class to working class reminds me that no life has a steady upward trajectory.  I empathize with him even though I am fairly sure he is oblivious to what anyone has ever thought about him.  His peaks and valleys are plain to see, but we all have them and we all try to spin them or hide them in one way or another as best we can.  Some people have the luxury of keeping their travails private, but like G., we cannot – we have a child with a disability, and in order to get him what he needs, we need to tell people more than we want to about our challenges.  It is maddening to have to sit across the table month after month and ask people to lower, raise and rework expectations for a mercurial child; to know that they think you can do better but that they are reluctant to do anything differently on their end.  They probably think I am a distracted eccentric.  The expression of fear mixed with pity is enough to send you to bed for a week.

But G. didn’t go to bed and neither have I.  He found something else to do with his life, and so have I.  Sometimes it means fielding looks from people who will never understand, but sometimes it also means wearing more comfortable clothes.

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