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.

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.

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.