scripts

"Mama, I think I ate my homework."

"I need some wood, a hammer, and some nails so I can build a treehouse."

"How much chocolate did I eat? Too much."

Martin has uttered these sentences in the last day or so. None of them have any basis in his reality. He doesn't have any homework to eat. We don't have a tree that could accommodate a treehouse. At most, he's had one chocolate chip cookie. All of these lines are from books or movies. They are from stories of worms eating their schoolwork and pigs building tree forts and animated cucumbers with chocolate addiction.

For a long time, Martin repeated entire scripts from books and movies. He often did this in stressful situations, like a playground full of kids who Martin didn't know how to interact with. He would also use the scripts as fodder for playing by himself, using little toy figurines to act out scenes from Sesame Street or moments from the Cat in the Hat. Now that he has more capacity for language use, we don't hear the scripts as often. But they are certainly there. I find them very mysterious.

For instance, most mornings Martin wakes up and comes into the kitchen. When we say "good morning," he says "good morning" back to us. He knows how to have morning conversation. He can talk about how he slept and what he wants for breakfast. This morning, however, I walked in his room and found him sitting on the floor staring into space. "Mama, I think I ate my homework," he said. I have to wonder what is going on. What about this morning is different? What about this morning pushes him out of the real world and into his own?

I'm mostly concerned about this habit because people find it kinda weird. For example, when I pick Martin up from school, he says his goodbyes to everyone. It always involves the same set of phrases. "OK, OK, I'll see you later. I'll see you five minutes. OK, OK." Of course, he isn't going to see people in five minutes. He won't see them until the next morning and he knows that. But for some reason, the task of saying goodbye strains him a bit and out comes a script.

I wish staring into his ears could give me some insight into what's going on in his head.

memory

Martin came home with a huge hand-made book. Each page had a map in which he colored one country from either North America, Central America, or the Caribbean. On each page, he printed out the name of the country he colored. The kid wrote "Guatemala" and "El Salvador."The book's construction paper cover read, "My North America Book - by Martin."

The booklet was one marker of Martin's school successes over the past two days. He has occupied himself with activities during worktime. He actually ate his lunch. He even stayed outside for almost all of recess. He had a few rough moments in circle times, but he's not alone in that problem. His tutor reported that Tuesday and Wednesday have been his best school days yet.

I would never know about this difference from Martin. He reports that every day at school is a good one. He always confirms that he played with kids, ate his lunch, and played outside. No matter what the day before was like, Martin is eager to go back to school the next day. I need to learn from his example.

There is one thing that keeps me from doing this, though. I have a great attachment to memory. I love to remember things, to go over them in my head. I often wonder what Martin's memories are like. I know that he recalls things. The other day, for instance, he remembered that there is a dog at the vacuum cleaner repair shop. Or he'll insist on using a nickname for someone that he invented when he was one. But I wonder how those things enter and replay in his mind. Will he remember sitting in his class and making a North America book? Will he remember it as a good day? Or will he remember every day - even the bad ones - as part of a wonderful whole?

Godot

VLADIMIR - Well? What do we do?
ESTRAGON - Don't let's do anything. It's safer. (Waiting for Godot 1.194-5)

An article in the New York Times brings me back to healthcare. (http://www.nytimes.com/2009/09/15/technology/15speech.html) This story, about the difficulty faced by people with speech impairments trying to find helpful devices covered by insurance, is only tangentially about autism. But it points to the myriad obstacles - problems that have nothing to do with one's diagnosis - faced by people in our culture who have life-long medical conditions.

It's hard to imagine the extent of the madness of our system until someone you love has a diagnosis. Then you get a long, slow, and painful initiation to caring for your body in our society. Maybe it will involve holding a bake sale to buy your kid's hearing aids (My mother's friend did this). Maybe it will be the never-ending headache caused by filling out forms and finding out what qualifies for coverage or trying to read your medical bills. Or maybe it will be when you discover your insurance would rather cover childbirth in a hospital than childbirth in a mom-friendly - and less expensive - birthing center (This was my experience when I had my daughter). The absurdities come in a never-ending stream.

Needing medical attention in our country is like a Beckett play that never ends. You hear phrases and sentences with recognizable words but the plot works against every effort to make meaning. When you try to get treatment here, you often find yourself unable to do this most vital thing. And yet the words "treatment" and "health" and "cure" are all around you.

And yet, as with so many things in life, many of us are willing to fall on our swords in defense of the system we have, in defense of what we know so that the unknown can be kept at bay at least a little bit longer. But for those of us who love people who need medical attention, the unknown and out-of-control is already here. Diseases and conditions have already delivered us ample portions of absurdity. So why do our systems of treatment add to it? Shouldn't they help us make sense of our lives that have been dramatically altered in the course of a simple doctor's visit? When will we have a system that helps us have grounding and composure in our health struggles instead of an extended replay of our vulnerability played out in every office interaction, bill in the mail, and service denied?

Don't let's do anything. Great. I'm still here and still waiting.

try again

Well, tomorrow we try again. We will pack Martin's lunch and take him off to school, wondering if we'll get a call mid-day to take the poor kid home. There was no school today. Where I live, the county fair gets local children out of school for the day. So tomorrow is our first day back after a much needed weekend.

This weekend was an eventful one at our house. My parents and two of my uncles traveled here from Indiana. We had a big task set before us: insulating our humongous and drafty attic. My dad and his brothers can do anything with their hands. They build stuff and fix stuff. When my father mentioned to his brothers that he planned to come out here to help us with this project, they volunteered to come along. Just like that. All I had to do was provide a place for them to sleep and cook them meals that had ample meat and weren't too spicy. I love my uncles. Not only did they help us rebuild the attic floor and blow 48 bags of insulation into that cavernous space, they just hung out here with us. They ate with us and chatted with us and reminisced with us. Their presence here is all I could point to if someone asked me to define "family."

It helps me to see my life - and our struggles with Martin - in light of my family's longer story. Every generation that I have known has had its share of pains, yet they all keep eating a lot of ice cream and laughing at jokes. My grandfather left the Amish during his 40s, jeopardizing all his close relationships. One of my uncles has a terrible struggle with diabetes. He has lost one of his feet. My cousin gave birth to a baby with Down's Syndrome a month after a big family reunion last summer. Despite these difficulties, my people not only laugh and eat ice cream, they keep having babies. At the aforementioned family reunion - a gathering that included my father's siblings, their kids, and their grandkids - there were seven babies under the age of one.

My uncles remind me to be hopeful, that everyone has pain, and that there is always ice cream and uncles to help you get through it. Thank you, Vernon! Thank you, Danny!

sad

We're on a major downward trajectory. The last few weeks of summer were a wash. School is going badly. Afternoon tutoring is so-so. Sunday school is not working. Any new thing we try explodes in our face. We can't even manage a trip to the county fair. Somehow, the promise of animals, ice cream, and a carnival ride can't get us through an hour-long excursion outside our home.

I am at the end of my rope, a place I never thought I'd be considering all of Martin's progress last year. We're considering drastic measures: removing Martin from school, setting up one-on-one tutoring, hoping to schedule in some social stimulation. It would be another dramatic change in Martin's life, but one that might be worth it given his recent experience.

I'm just so sad about it all. How we haven't been able to work things out with the teacher. How we failed so miserably in the tutor transition. I feel like a loser and a quitter. And if you know me, you know quite well that I am not used to those feelings. I have this sneaking suspicion that I'm living out the plot of an after-school special about special needs kids or am the center of a "Touched by an Angel" episode. I feel trapped in a narrative about a stressful situation taking its toll on people. Basically, I have to let go of the idea that I am so damned resilient. That my family is resilient. And I'm sad about that.

almost normal

Parents of autistics, or any non-typically developing children, have to decide when and if to tell people about their children's situation. This is an easy decision when it comes to friends and family. You have ongoing relationships with these people, they need to know for a variety of reasons. The issue is strangers. Do you disclose the diagnosis to people before anything strange happens, so as to preempt any misunderstandings? Or do you wait until something occurs? Or even if something batty happens, do you simply remain mum as either a test of people's wherewithal or hope for tolerance?

This morning at the farmer's market, Martin went down two long tables touching and naming every vegetable. The vendor didn't seem to mind that Martin touched the products, so I didn't say anything. When he counts the items we take out of the grocery cart and puts them directly into the hands of the cashier, saying for every single item, "Here you go," I also remain silent. I only speak in dramatic situations where were getting crap from someone or in moments in which other parents seem awed by Martin's reading ability.

For instance, I tried to take Martin to a little violin concert that one of his classmates was in. Little did I know that every child in our town was also in this recital, either dancing, singing, or playing. The auditorium was packed and sweltering. I had taken Martin in the building with a stroller since we had walked to the concert. Somehow, we got trapped behind an entire class of ballerinas about to go on stage. Martin started to fidget. He began talking to himself, saying lines from a movie. I knew we needed to bolt. But we couldn't get around the ballerinas until they went on stage. Knowing that a public meltdown was imminent, I told the mom in charge of the girls in tutus that I simply had to get my kid and the stroller out of the tight and crowded hallway. She looked at me impatiently. "He's autistic," I told her. Immediately, her demeanor changed. She made a way for us, pushing little girls so we could get out. "He's autistic," she said, as she tapped people on the shoulder, clearing a path for us.

Once we got out of the building, I was relieved, but also glum. I've never had to deal with being too different in a way that I haven't chosen. I have no conspicuous birthmarks, no wheelchair. I look like a lot of other people in this country. But now I knew what it felt like, what it's like to live in a world that isn't quite designed for who you are. I guess that's why some parents "out" their autistic children immediately. They're just trying to let others know that their kid lives by different rules. But I keep banging my head against the reality of difference in our life. I'm not sure I've ever fully accepted it.

confession

So one time (about two years ago) I got really frustrated about something and swore in front of Martin. It was the worst kind of swearing: GD. God dammit. I must have cringed or looked pained or something because Martin realized right away that I had done something very bad. He then ran around the house repeating it with a big smile on his face. He even said it at daycare once.

To this day, if I even say "darn it," Martin looks at me with a kind of gleeful suspicion. He gets a knowing look that says, "Watch out, Graber, you're almost doing something bad and I know." Tonight, I had the kids by myself because my husband was at a meeting. Hoping for the best, I put Martin in the tub and tried to get Sasha ready for bed. I heard all sorts of splashing and horsing around in the bathroom, but I didn't mind. Then Martin asked me to remove the bath mat from the tub. I told him it belonged in the tub so that he wouldn't slip during the course of his monkeying around. He then picked up the wet mat and flung it on the floor, getting water everywhere. "Darn it, Martin," I said. He looked at me, recognizing my statement's proximity to GD, and said, "Mama, God is love. It is love time." As he said the second sentence, he crossed his arms over his chest, a sign for love that he learned when memorizing a verse about love in Sunday School. I was undone.

I was reading Judith Butler today. She was writing on violence and the grief that comes after it and the possibilities for creating interesting politics after violence occurs. In her consideration of how we are affected by violence, loss, and grief, she wrote, "Let's face it. We're undone by each other. And if we're not, we're missing something." Although she was writing about the loss of death, her words speak to the way we feel about the living, with the people we love now and all their complications. Sometimes, I mourn all the losses that autism has exacted from our lives. I can get pretty sad about the gap between our world and Martin's world. But then I experience moments where Martin's world is the right world. It is love time. Then I realize that I am losing only if I don't pay attention.