Source: Lessons from the Blood Moon
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.
After all of my hand wringing yesterday afternoon, perspective arrived in the evening. After a patchy, overcast weather all day, a thin stripe of sunshine lit the trees across the pond followed by a pink sky, promising a lovely day today.
And as I watched the full moon rise after the light faded, my boy mention as he passed me, “I planted a seed in your garden today.”
“Yes. I planted my nectarine pit in the garden so that it would grow into a tree.”
Never much of a gardener before, I began planting new things each September since 2001 as a way of reminding myself to appreciate where I am now and to invest hope in the coming spring. The result is a garden that gives me more joy than I ever imagined. This year’s bulbs sit in a box in the garage waiting to be planted, but it’s good to know something went into the ground on the 11th. Now, to figure out where he planted it and keep the chipmunks away from it.
Finally, we stumbled on the Science Channel’s Rising: Rebuilding Ground Zero and it was gratifying to see something emerging, at last, from the ashes of that day. No false reality TV drama, just stories and extraordinary images of the new buildings and the memorial and how they are being built. The series is several hours long and worth every minute. Thank you, Steven Spielberg.
I think it was the purported demise of the Postal Service that did it. When I said when I started LettersHead because people aren’t writing letters anymore I never thought it would come to this. It could also be that, after 10+ months of benign neglect I checked in on LettersHead and found out it went on without me, collecting hits and links and daring me to start writing again or pull the plug for real. Or maybe it’s because my kids are in school and I broke my foot and I can’t drive and I tend to drink too much coffee. In any case, Lettershead is back and I am going to try again at an epistolary narrative. Cabin fever aside, some things have happened over the past few months that seem to removed some of the roadblocks to writing; I need to test those barriers to see if they are indeed ready to tumble. As my friends would say, “good luck with that.”
But I didn’t really give up on the random slice-of-life observations that appeared in this space before. Autism drops too many choice moments into my life for that, so those can be found at the blog I started in my endless quest for useful places to put things that are cluttering my mind. It’s called I Wouldn’t Have Missed It and you can find it here.
Finally, I have to give credit to my dear friend M. over at Life in A Skillet. She sent me As Always, Julia and she proves time and again that blogs are both worth reading and writing if you put equal parts heart and mind into it.
Our boys play a game called cats versus dogs, and as you can see, one side of the room is mostly cats and the other dogs. The game involves a fight modeled on the battle scene in The first Chronicle of Narnia movie, The Lion the Witch and the Wardrobe. Devised by my older son with ASD, it involves charging horses and airborne animals colliding all over the place, accompanied by epic music and battle cries. If you look very closely, the animals and toys that are neither cats nor dogs are divided up (roughly) by good guys and bad guys – Captain Hook with the dogs, Peter Pan with the cats, etc. After the battles, we notice that cats and their friends always win, and the ensuing conversation goes something like this:
“When you play cats versus dogs, who wins?”
“They’re the heroes; dogs are villains.”
“Because dogs chase cats. Dogs are villains because they are too jumpy.”
“So the cats are good because they get chased by the dogs?”
“You’re a good kid, you always root for the underdog.”
“No – the undercat.”
Living with a person who has autism brings surprises every day, some pleasant and some decidedly less so, but they always catch at your heart, one way or the other. Take this box of peaches. I left it in the back of the car for the night, knowing that if I brought it into the house that my son would eat them all before dinner and then I would have no fruit to put in his lunch the next morning. He is, after all, a teenage boy. This morning when I went to fetch the box, I found it like this, with four peaches eaten and the remaining pits carefully placed in each compartment (the two empty ones are the ones I put in his lunch). When I asked if he “sneaked the peaches,” he said, “Yes! And I left you the seeds!”
We spent September 11 raising money for special education and being a family all at the same time. It’s not as easy as it sounds. As a family we made and sold french fires at a local festival with other families to help special education in our school district. We know some truly amazing people who made this possible, and we all come from diverse backgrounds – what draws us together is what we dream of for our children. There aren’t a lot of things we can do together to help out, but we found something in this activity today, and I am as proud as I have ever been of us and those we know for making it all come together and allow each of us to contribute. And in the background, First Responders from New York came here to tell us their story and their wish for peace.
And me, I began and ended the day in tears, wanting something lovely for me and my family and finding it as we ended the day and wended our way home singing aloud to Elton John’s Tiny Dancer, knowing somehow that the child in me, miraculously, has been given all she needed over the years. Who can ask more for that, when so much changed and so much is needed for us on September 11?
It’s the first day of school and the new ridiculously early schedule and the blazing heat make me feel like I imagine these cows feel – I just want to stand in the shade and barely move and not think at all. I am already nostalgic for summer and the late afternoon moments when, while riding with a car full of kids (autistic and not, for the record) past the farms, all of them would spontaneously start to moo at the grazing cows.
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.
“Thank you!” I said, not very politely. At which point another of my children said, “If I had called you a furious cow, you would have gotten really mad at me.” I agreed, adding, “But he got that from somewhere else, and on top of that he loves cows – the furious part is the insult, not the cow part.” Point taken.
Even though I shouldn’t be pleased that the autistic trait of drawing speech from movies and TV is so prevalent in our boy, I have to admit I get a kick out of it. When he was small, people at the local pool thought he was British because he drew so many of his phrases from the exceedingly polite Kipper cartoons: he would stand next to the diving board and pipe up, “You have a go!” Considering all the movie lines people throw around these days, it’s really not so undesirable – it’s a useful kind of shorthand. As he has grown and developed more of his own, original speech, his reliance on scripts appears most often when he is upset and words come less easily. Knowing that the phrases come from somewhere else takes some sting out of the confrontation and allows us all to laugh (most of the time). After the cow exchange we set about documenting the latest vocabulary of annoyance, and its sources:
- “Exactly WHEN did you go insane?” – Ice Age
- “I’m not interested in your excuses!” – Sir Topham Hatt, Thomas the Tank Engine
- “You’re a cowardly chicken, you really are.” – Porky Pig
- “You are shrewd, rude, mean and dangerous.” – Chicken Little
- “I hate you, rabbit.” – Yosemite Sam
- “Foom!!” – This is the noise made when Sylvester the Cat’s head ignites in frustration.
- “YOU get out! This is MY swamp.” – Shrek
- “Well? Where’s the REST of me?” – Daffy Duck
- “I’m going to go to the hospital for a NEW one.” – so old no one remembers, including him
- “You’re just. . .different.” Howard Bannister in What’s Up Doc?
- “Murderer” – Scar in the Lion King (complete with Jeremy Irons accent)
- “You’re a looney duck and a cowardly cat, you really are.” – Porky Pig.
- “Madam, you WON’T” – Merlin in The Sword and the Stone
and, my all time favorite from What’s Up Doc: “Who is that dangerously unbalanced woman?!”
That would be me.