Wednesday, September 30, 2009


I'm not really suffering from schadenfreude, that cruel pleasure one gets at another person's hardship. Rather, I'm just proud of my kid. Today, Martin was the ONLY well-behaved kid in his classroom. Every other child was loud, inattentive, disobedient. According to the tutor, it was a rough day in the classroom, but not for Martin. He was a peach.

Martin's ability to have a good day while everyone else went nuts is a little contradictory. If any change in routine can throw this kid for a loop, why not a classroom full of riotous children? It would make sense, right? But when he wants to, Martin can clue out everything else. Today, he just did his own thing while everyone else was a little crazed. On other occasions, Martin has simply watched out the window for the entire 6-hour car trip to Virginia, a journey that drives other children to tears and their parents to unplanned purchases of portable DVD players. He can concentrate while his sister cries at deafening levels. While she wails, he continues his tasks of lining up cards and acting out little dramas.

Of course, Martin's ability to concentrate, his capacity to shut out the rest of us, has its pros and cons. Unfortunately, most days it feels like the world can only see the cons. But today, just for today, Martin was the good little guy in his class. His autism was his strength. His peculiar brain, made like it is for unknown reasons, served him well.

Tuesday, September 29, 2009

advantage graber

Here's how the presidents rule our lives:

1) I found Martin on my bed this morning, reciting from memory the 7-minute online tour of the White House exterior. The monologue included scripted movements that mirrored the camera panning to various angles around the building. I also got a complete version of the credits, accompanied by swooping hand gestures to signify the words moving upward.

2) Martin asked me if he could have a bottle of wine this evening. "You have to be 21-years-old to have wine," I replied. "Like Chester A. Arthur," he said. (For anyone who skipped that particularly boring moment in high school U.S. history, Arthur was the 21st president.) Martin sometimes mixes up the presidents' numbers with their age. Tonight he asked me if I was George H. W. Bush. Trying not to be offended by a steep overestimate of my age, I replied that I am Lyndon Johnson. In an effort to make me the age of a president he likes better (or maybe he's in tune with Americans' desire to be younger), he then told me I should be John F. Kennedy instead. He's only 35.

3) I found a 50-cent piece by Martin's bed. He likes to sleep with it, because it has Kennedy's image.

4) Some Caldecott-medal-winning children's author decided to monkey with the ubiquitous pattern of presidential layout (starting with 1 and going to 44), choosing instead to group together presidents named William or James or John. I'm sitting in my living room, minding my own business, only to hear a terrified scream, "Where is Zachary Taylor?" No explanations for the unorthodox groupings satisfied Martin. He has no more patience for that book.

5) I had to explain slavery to Martin, who was reading another book about Millard Fillmore and James Buchanan's unfortunate support for human servitude. Martin didn't exactly get it.

I'm ready to start using this obsession to my advantage. Here's my plan. When Martin refuses to touch the delicious main dish I have made for our family, I will simply comment that James K. Polk - even more than his desire for more Northwest territory - loved pepper and rice casserole. In the nightly battle over teethbrushing, I will dwell on Lincoln's fabulous oral hygiene. Am I wrong to do this?

Monday, September 28, 2009

why do we think these things?

While I prefer to get my information from books, I sometimes go to Google in search of autism factoids. In desperation, I have looked up "autism and potty training" and "autism and Halloween." (These were, in the order listed, horrifying and helpful searches. The former provided me with dozens of stories of autistic children wearing diapers forever and the latter gave me tips that helped Martin make it through trick-or-treating, including don't make your autistic kid wear a costume with a big headpiece and practice the whole candy-getting ritual in the hallways of your home for at least two weeks prior to the big night.)

Lately, I've been thinking a lot about autism and affection. I have been prompted in this by Martin's ability and willingness to say affectionate things. He's always been a hugger and kisser, but he struggles to express himself verbally. In recent weeks, however, he's had some speech breakthroughs. As I noted in a recent post, he told me that I should not go away for the weekend. When I talked to him on the phone yesterday, he called me "middle-sized bear," a reference to the Three Little Bears and a term he likes to use before giving hugs. Tonight, as I put him to bed, I told him that I had taken a ride in a boat in Pennsylvania. Martin replied, "I want to go on a boat in Pennsylvania with you."

Books on autism often mention affection. Many checklists of autism symptoms include statements about children shying away from affectionate gestures and refusing to look people in the eye. There is a common perception that autistics aren't affectionate. If you go to Google, however, you find sites in which parents of autistics try desperately to dispel this perception as an unhelpful, if not destructive myth. Myriad websites detail parents' stories of kids who hug, kiss, say "I love you," and express sadness when people they love are not around.

It is certainly my experience that Martin has always been physically affectionate, but that he needed lots of verbal development catch-up before he could put his feelings into words. I've always thought Martin was unusual in this, but maybe these parent testimonies tell me something else? Maybe the "autistics aren't affectionate" conclusion ranks up there with other common cultural holdings that are sometimes true and sometimes not. Like alcoholics can't hold down a job or feminists hate men or Saturday Night Live is funny.

This makes me want to think hard about the things we conclude about groups of people. How does it show us what we value? Why is it so bad if some people can't hold down a job or if others are through with men? Why is someone's ability to express affection more important than whether or not they feel affection and love from others?

Thursday, September 24, 2009

1600 Pennsylvania Avenue

Even though my Amish heritage has given me a cautionary approach to technology, I have to wonder how people parented autistic children before YouTube. I know most of the videos are inane. Many mark an aesthetic low point for our culture. But it is a wonderful resource for the endless series of obsessions that autistics have. Martin's love of the presidents involves not just flashcards, a placemat, a book, and paper cutouts, but a couple of videos. His recent favorites include a 7-minute tour of the White House exterior and grounds and a 4-minute montage of the 44 presidents morphing from one face into the next. (The Grover Cleveland-William McKinley transition is a little unsettling, especially because the videomaker has "Bolero" for background music.) Martin finds these videos very soothing. After a day at school, he'd like nothing better than to watch what he calls "The White House Story," to hear - once again - the narrator describe the Truman Balcony and the Bill Clinton putting green.

It's easy for me to look at Martin as he watches these videos and wonder what is going on in his little world and how he will ever relate to the rest of us. But then I have to remember that the little guy just finished a 5-hour day of school, which includes social situations that are particularly challenging for him. I guess these little videos are to Martin what a glass of wine after work or a little backrub after a run are to the rest of us. If I really think about his whole life, rather than focus on his "presidential moments," I realize that he doesn't spend most of his away from the rest of us. He spends most of his time relating to us.

This was confirmed for me tonight when I put Martin to bed. I told him that I will be going away for a few days (I'm off to the anti-technology zone of a college roommate reunion in the Poconos. No blogging, but lots of kayaking.) I've told Martin about my travels before. He has never really registered them. But tonight he said, "Mama, you don't have to go away. You can stay here. Don't go." So not only is he in the real world, he's trying to get me to play my proper role in that world. He wants us both to be a part of life at 1045 Quinby Avenue. Take that, James Buchanan.

Wednesday, September 23, 2009

you've been warned

We might be approaching something we can call "routine." After a summer punctuated by our vacations and the tutor's time off, after four weeks of school that have seen new tutors come and go, we might have a reliable schedule in place. It's no surprise, then, that Martin is having better days. I don't want to jinx it, but he has made it through two school days with only minor incidents. He has been quite friendly and mostly compliant at home. He's even been playing quietly by himself (something he normally loves), rather than engaging in attention-seeking (ie. bad) behaviors. We're nowhere close to Martin going to school unassisted, but we are definitely out of the woods when it comes to potential expulsion. What a relief.

We've known for a long time that Martin struggles in the face of new things. Before his diagnosis, his language delays certainly concerned us, but we were pretty sure things would even out. It was Martin's complete inability to enjoy himself on a terrific summer road trip that made us wonder what the heck was going on. How could he not enjoy a house full of kids his own age? Why did he resist trips to the zoo and the neighborhood pool? Why were his only happy moments when he could play in the waters of Lake Winnipeg, the waves and wind drowning out the rest of us? Now we know. And every time we forget and move forward without plans and try to make Martin adjust to what we want, we all the pay the price.

Will all of you readers out there let me know if you think I'm headed for disaster? If I announce our forthcoming voyage to Zanzibar? If I detail plans to move to the moon? Or if we simply try to take this kid on a vacation?

Tuesday, September 22, 2009

this little piggy

One of the joys of motherhood for me has been the world of children's literature. The Snowy Day, Goodnight Moon, Who Said Red?, and Harold and the Purple Crayon. Such wonderful stories. But if any of you have a house full of children's books, you know that for every delightful book there are at least three awful ones. They can be bad for a variety of reasons: insipid stories, bad illustrations, or they are not really designed for children. The worst offenders, however, are the hyper-moralistic stories bent on teaching children values.

While the author of the newer Berenstain Bears series might be the worst offender, the one that has gotten my goat most recently is Richard Scary's Pig Will and Pig Won't: A Book of Manners. If you can't already guess the plot line, let me offer you a short excerpt: "If Mother Pig asks them to please be quiet, Pig Will whispers, 'I will.' Pig Won't shouts out, 'I won't!' Bad Boy!" On a side note, I'd like to ask Mother Pig to stop splitting infinitives, but more importantly, how ridiculous is this book? Is this really a story? Indeed it is. Pig Won't doesn't remain entrenched in his stubborn ways. In a moment reflective of a Billy Graham crusade, we turn the last page to a chapter entitled, "Pig Won't's Decision." (Again, who edited this book?) A worm named Lowly tells Pig Won't that being nice gets you friends. Pig Won't "decides that he will try to be good."

Martin loves this book. He reads it several times a day. And to my chagrin, its moralism works on him. Martin actually talks about his behavior in terms borrowed from the book. If he is being bad, he will say that he is Pig Won't. The book's characters are so clear to him that I have taken to invoking them. When I saw him wrestle a 2-year-old to the ground the other night, I had two questions for him. "Are you Pig Will or Pig Won't?" "Pig Won't," Martin replied. "Are you ready to be Pig Will?" I asked him. "Yes, I'm Pig Will," he answered.

While I never expected that life with a 5-year-old would involve lots of conversational subtleties, I wasn't really expecting this either. Tonight, Martin was upset about not being allowed to go outside. In response, he banged his head on the front door and broke a small pane of glass with his forehead. I was gone (he did this on the babysitter's watch). But if I were home, it would not have helped for me to talk about the danger of broken glass, the perils of running outside without an adult, the problems of disobeying the babysitter. The clearest thing I could have done is say, "Martin, you are being Pig Won't. Pig Won't is not welcome here. It's time to be Pig Will."

Monday, September 21, 2009

do i have an ethic left?

When I was pregnant with Martin, I heard all the classic lines. "You're life will never be the same." "Watch out, parenting is hard work." "Get ready to lose a year of sleep." Then I had Martin and life was really great. I didn't get much work done. And I did lose some sleep. But the positives significantly outweighed the negatives. I wondered why, when people told me it would be so hard, that they forgot to mention that it would also be so much fun.

But maybe they were referring to now, the time I have an autistic 5-year-old and a teething 16-month-old. This is hard, particularly in the evenings. My spouse and I mentally prepare ourselves for a patience-draining period between 5m and 8pm every night. The time usually includes only one of the two children actually eating any of the home-cooked meal one of us has prepared. It also involves at least one of them losing it for a seemingly insignificant reason, perhaps a limit on raisin intake or a misplaced deck of president flashcards. It also involves Martin acting like teethbrushing is a violation of the Geneva Convention and Sasha screaming out to the four corners of the earth that her awful, awful parents have dared to put her to bed at 8 o'clock. I'll just admit it: for the past several weeks, if not months, I have rarely enjoyed my children in the evenings. I'm considering various vices to get through the evening hours. I've never liked Scotch. I've never even tried marijuana. But this seems like a situation where both might be in order.

My husband and I took a vacation earlier this summer. To celebrate our 10th anniversary, we spent 13 days in Croatia and Bosnia. It was our first substantial break from childcare since Martin was born. It was wonderful. But now that I've had a taste of a break, I seem less and less able to live without one. Vacation made me a wimpier parent. It made me want more vacation. (Note to Calvin or Weber: your Protestant ethic has been vindicated, at least in my life.)

But maybe these feelings about evening after evening with cranky kids in contrast to lovely memories of the Adriatic Sea relate to what I was writing about yesterday? Rather than feel bad about wanting to up our liquor intake or dreaming of far-off locales, what we need are more hands on deck. More hands to help with the challenges of parenting any kids, but especially special needs kids. But how to find those extra hands? That's the problem.

Saturday, September 19, 2009

olden times

If I had more time on my hands, I'd start fan clubs. I've considered the "Raw slices of kohlrabi fan club," "Obscure Prince hits fan club," and "Miniature lop rabbits fan club." But if I were pinned down today and had to start a club, I'd found "The Jill Lepore Fan Club." I am an adoring fan of this Harvard history professor and New Yorker writer who meditates on everything from the founding fathers and antebellum race riots to the history of breastfeeding.

My latest favorite is her piece in the New Yorker about the history of parenting. (
She explores the history of American "parenting", especially as it evolved to distinguish between those people who had children and those who did not. Lepore argues that in olden times (ie. up to the turn of the twentieth century), every adult parented, whether they had their own biological children or not. Most adults lived with children in their households, even if those children were not there own. They were children of extended family members and were everyone's responsibility. Lots of cultural changes gave us the world we now inhabit, a world that Lepore describes aptly when she observes that, for some women and men in America, the first baby they hold is their own.

Her article reminded me of another major change in American life. Before the turn of the nineteenth century, before we had institutions such as mental asylums, prisons, and orphanages, folks with mental problems, criminal propensities, and no parents were usually absorbed into their families and villages. These were the kinds of families that Lepore describes. Multiple people in a household with a common responsibility to support the welfare of children and other members on the margins. This set up must have made dealing with special needs children (yeah, yeah, I know the term is anachronistic) a very different experience.

I'm not one to romanticize early America. I know things like how many capital crimes there were and how many people were disenfranchised and I haven't forgotten about chamber pots. But the trends in parenting that Lepore describes have had an incredible impact on people who have children who are not typically developing. The trends that make for a parenting experience in which "all the mothers want forgiveness; all the fathers want applause" is simply amplified for parents with special needs kids. To a great extent, our culture leaves you on your own to parent. It offers lots of products to assist parents, but autism is hardly assuaged by merchandise. Life with autism is only made livable - and slowly and surely made better - by lots of time and contact and connection. Our parenting culture is short on these things.

To be sure, I shot myself in the leg on this one. I chose not to live near my parents or my spouse's parents. "The power of culture" is not totally to blame. But the power is there. Read Lepore. You'll be convinced. And then join the fan club!

Friday, September 18, 2009


My favorite Baptist once warned me about Ci-Ci's Pizza. Somehow, back in 1996 or 97, he got wrangled into going to one. Something with a youth group, if I remember correctly. He returned from the adventure like a New England captive's arrival home after some quality time with the Indians. "It's awful. It's loud," he cried. "Yelling children everywhere. Don't let it happen to you."

I was at Ci-Ci's tonight. It's one of the only restaurants Martin can manage. We take him there as a reward for good behavior. Fourteen smile faces earn pizza, or ice cream, or a special movie with the rest of the family. I always think of my favorite Baptist when I visit Ci-Ci's. It seems that now, more than a decade later, the place has more construction workers and football players than children. You can get a free drink if you bring in your church bulletin. It has Wi-fi. Where Ci-Ci's might have once been a horror, now it's just surreal.

When I'm in places like Ci-Ci's, I'm secretly glad that Martin's mind is so impenetrable. He has no idea that he could ask to play video games, beg for candy from the machines, or watch the television. He simply does his routine. He asks the cashier for pizza (usually starting his request with the line, "Hello, cashier"). Then he eats two slices of cheese pizza, three carrots, and a brownie. He sits in the seat of the one of the video games for a few minutes. Then he is ready to go. He is unfazed by the moms talking sternly to their children. He doesn't notice all the awful stories on CNN as it plays endlessly.

I hope that we can find things that make the best out of Martin's focus. I once read a story about a guy with Asperger's who got fired from any job that required multitasking. Then he got a job editing and writing introductions for medieval poetry volumes. He could throw himself into it. He loved it and he was good at it. Maybe Martin can be a monk, or a science researcher, or a builder. Maybe he'll draw comics or become a surfer. Whatever it is, I think it will be one thing. And he'll take that one thing with him wherever he goes. And it will be the thing most present to him, even in crazy and noisy places like Ci-Ci's.


"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.

Wednesday, September 16, 2009


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?

Tuesday, September 15, 2009


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. ( 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.

Monday, September 14, 2009

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!

Sunday, September 13, 2009


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.

Saturday, September 12, 2009

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.

Thursday, September 10, 2009


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.

Wednesday, September 9, 2009


A lot of parents of autistic children don't even realize there's a problem with their kid until they have another baby and start to see the differences. This may seem odd to people without autistic children. How could you not know? How could the repetitive action, the hand flapping, the delayed speech, and general weirdness slip by any parent paying attention? There are lots of reasons that it does. In our situation, Martin said lots and lots of words. So we could answer "yes" to the pediatrician's questions about Martin gaining vocabulary. Martin also said sentences with two or three words. Again, we could answer positively that Martin was speaking in sentences. What we didn't know was that Martin could say words, but was not necessarily attaching them to any reference. He could say "door," but that didn't mean he knew the word denotes the wooden thing between rooms that opens and closes. We didn't know that when Martin said sentences, he was only mimicking sentences he heard other people say. He could not construct them on his own.

Now I have another baby. She is 16-months-old. I can already see the differences. She can ask for juice. She can say "hi" and "bye" to people at the appropriate times. The huge shocker: she can take directions. I carried her into church on Sunday, set her down, and told her to go to the nursery. I did all of this not really expecting her to do what I said. But she gave me a smile and headed into the hallway, around the corner, to the nursery. I was stunned.

I'm really undone by the fact that I have a child who seems to understand what I say. I have lived the last five years like one of those adults in a Charlie Brown cartoon. Wa-wah wa-wah. I can never count on the fact that Martin understands what I say. I can't imagine what it will be like to parent a child who can. I'm completely disoriented.

Monday, September 7, 2009

how I learned to stop worrying and love the doll clothes

I was nervous when I woke up today. While I figured we had a good chance at negotiating a compromise with Martin's teacher, I also felt that there was a non-zero percent chance that she would insist that he have a tutor accompany him to school for the rest of the year. That is something we simply cannot afford to do. So even though the chances seemed slim, the stakes were high.

The meeting went well. As with every meeting at a point of crisis, we all realized that we had - at least to some degree - misunderstood the other side. We came up with some strategies for helping Martin navigate the classroom environment. We talked about how best to use his tutor and what the conditions would be for her departure. It was a good meeting. I picked up Martin at the babysitter's a few hours later. He was covered with dirt after running around outside for hours. He looked forward to school tomorrow. We've tried to lay the groundwork for better behavior. He has a little homemade (ie. amateur) book with three stories. The first talks about putting books away before circle time. The second details how to wait on the porch before school starts. And the third talks about how to stay outside for recess until its time to come in. Martin read these stories before bed. Hopefully, it will sink in. It is probably too much to hope that they will work already tomorrow.

Today's meeting was a big relief. And it was another moment in which I realized I have to stop worrying. I will never be able to control how the world works. Sometimes, we'll be able to stay in school and sometimes we'll be asked to leave. There is only so much I can do. So tonight I decided to do give up, at least for a moment, all the ways I try to control the world. I decided to do something other than my job, my housework, my garden chores, or my church duties. I found an old dress of Sasha's and decided to make it into a doll dress. Sasha was given a Cabbage Patch doll for Christmas last year. Unfortunately, the outfit the doll came in was too lacy and pea green for my taste. (Sorry, Xavier.) So I cut away at this old dress of Sasha's and sewed up a jagged hem. The bloomers ended up a bit too big and the dress a little snug, but it was just right. It was the most useless thing I've done in weeks. I'll make another tomorrow as I wait for Martin to return from school.

Sunday, September 6, 2009

a little eden

Here's our story of progress. A year ago, if Martin heard a song on a CD or DVD, he would learn the tune but could not pick up the words. He would sing garbled syllables that sounded like the song, but if you paid attention you would realize that he didn't know what he was saying. Today, Martin used his stuffed penguins to act out the "Sister Suffragette" scene from Mary Poppins. He sang all the words right. No gibberish. A year ago, Martin was only beginning to answer "yes" or "no" questions. Tonight, when someone asked him who was the 30th president, he promptly answered, "Calvin Coolidge." Last year, Martin couldn't tell us what he wanted, whether it was food or hugs or toys. A few minutes ago, he told us he wanted to ride his tricycle to the White House to see Barack H. Obama.

Since I have lived with Martin through this process of remarkable progress, it is hard to imagine that he might have to have a tutor accompany him to school again. I know he needed one last year. His tutor was vital to his learning the routine, interacting with other children. The tutor's work meant that the teachers could concentrate on kids other than Martin. But he's come so far. SO FAR. And tomorrow we must go to a meeting where we'll discuss Martin's future at school. Even though he's had a rough first two weeks, I know he can do it. It will just take a little patience and time.

While my husband and I are at this meeting, Martin will be blissfully ignorant of everything going on. He'll be at my daughter's babysitter's house. The sitter lives outside Apple Creek, which is as quaint as it sounds. They have a swing set, a sandbox, a garden, and lots of space to run around. For as long as I'm able, I want to keep Martin aloof from the world's discussions about accommodating autism or not. In fact, I wish I could withdraw from these conversations as well. Maybe I'll spend the meeting daydreaming about swings and gardens. Perhaps I'll think about running around with Martin on a late summer day, trying for a little while to push out the difficulties we have trying to fit in.

Saturday, September 5, 2009

when can I move to New Jersey?

As I have written earlier, we participate in Ohio's "autism scholarship." The program is essentially a voucher system for parents who feel that the public school cannot provide adequate services for their autistic child. The funds are used to acquire speech and occupational therapy, one-on-one ABA therapy, or almost anything else needed to help bring an autistic child toward more typical verbal and social development. I am very thankful for this program. Our school system had no teachers or classrooms focused on autism. He could have one-on-one speech therapy only once a week. It was not enough.

With the voucher money, we pay for Martin's speech therapy and his tutor. Last year, the tutor accompanied Martin to a Montessori preschool. They did one-on-one work after school ended at noon. Our hope has always been that he could manage school alone. Last year, we transitioned Martin toward more time at school without his tutor's assistance. It went really well.

This year, however, has not gone so well. And part of the problem is that even if Martin can manage the school day alone, it will never look like the patterns of typical children. He will still cover his ears when the noise is too much. He will still needs breaks from the close contact with so many children. Even as the challenge of school helps him develop socially, it will never overcome the fact that Martin interacts with the world differently. And that difference is increasingly becoming a problem. With no teachers or classrooms focused on autism in our area, Martin has to be in more typical settings if we want him to experience school. And no matter how the teachers and administrators try, they never seem to be able to let go of their typical standards. They want Martin to respond consistently to verbal direction. They want him to learn routines quickly. While they would never say that they want him to be like everyone else, they want him to act like everyone else.

So I am ready to pack my bags for New Jersey, the state where insurance companies must cover speech and occupational therapy for autistics to the same degree they cover it for stroke victims. I'm ready to head out for the state with the most renowned public school resources for autistic children, with teachers and classrooms prepared to work with kids like Martin. But I don't live in New Jersey. It's hundreds of miles away. I live here and have no idea how to make the best of this situation. Anyone in NJ want to trade houses and jobs for awhile?

Thursday, September 3, 2009

double dipping

I'm double dipping. I just got home from a church meeting that included a long discussion about children's church, a program that occupies kids from ages 2-7 during the sermon. While parents of young children support the program, there has been vocal opposition from older folks who think that kids need to learn to sit through church. The conversation was so troubling to me that I got home and wrote to the necessary parties. Here is part of that text:

"...Tonight I felt that more concern was being expressed for older members and their preference for tradition than for a person in the church who believes she is called to serve young children and the young parents who have claimed that the program helps them and their children. What do these older people have to lose other than a sense of satisfaction that things are like they used to be? I can tell you that those of us on the other end have a lot to lose. We have heard the message loud and clear that our children need to learn to sit in church. It has been communicated to us that this is more important to some people than the fact that we have some children in this congregation who (for medical and behavioral reasons) simply cannot do it. Do people not understand what the Rohrers, the Hershbergers, and my husband and I go through every day in our efforts with our special needs kids? To be told that I need to be more merciful to old people and their preferences for tradition - a tradition that has nothing to do with the gospel of Jesus - feels pretty bad. I tried hard to put these feelings aside during the rest of the meeting. But on the way home it began to hurt again. I wish that people understood that those of us with troubled kids WISH that our kids could sit in church. I WISH that sort of normality for Martin every day. But I can't make Martin do what the older people want him to do. Why can't anyone have some mercy on us and give up this constant whispering about children sitting through church? It is so demoralizing."

Wednesday, September 2, 2009

my cause

I've never been to an autism parents' group.You might wonder why I haven't availed myself of the advice and support of other folks in my situation. But I've never even been tempted. I tell myself that I avoid these meetings because they might not help since every autistic child is so different. That the meetings are probably bogged down by endless conversations about vaccines and diets, mercury cleansing and treatment controversies. While I would feel uncomfortable in any setting where those themes dominated, there is another important reason that I avoid these groups. I do not want autism to become my cause.

Let me admit something that might make me lose friends. I hate it when people promote a cause because it happens to affect them personally. For example, there's the person who sends internet petitions about library funding because their niece is a librarian. Or the person raising money for a walk-a-thon to fund kidney transplants because granddad just had one. While I am completely sympathetic to public institutions like libraries and the profound impact a family member's illness can have on a person, the whole thing smacks of selfishness to me. It's like saying, "This should be your problem because it is my problem. I didn't even know it was a problem until it affected me. But now it is the most important problem and I want you to think that, too."

I think I'm impatient with these promotions of causes because of the topics I research. I study two things: early American prisons and nineteenth-century Indian wars. These are not pretty topics. Yesterday, I was reading about Minnesota in the 1860s. A government official withheld food aid from native peoples confined to a reservation and then remarked that they could eat grass if they were hungry. In response, the Indians started a war in which hundreds of settlers, including women and children, were murdered. When you study stuff like that, life with an autistic child hardly counts as tragedy. I can't get on a soapbox about autism because every day I read about other human beings, other people in this country's history, who had their cultures destroyed, their freedoms curtailed, and sometimes their lives taken. I don't feel self-righteous about studying this stuff. I just think that these stories of injustice demand more of our empathy and activism than what I experience daily, no matter how heartbreaking it can be.

But maybe I have always wanted to take up causes for forgotten people - like criminals and Indians - as a way to tell myself that I am not as vulnerable as they are. Somehow, by studying them, I can insist that I am fine and have the time and energy to be concerned about someone else. So maybe I don't go to autism parents' groups because that would mean admitting my own vulnerability. Going to a support group might mean that I need someone else to take up my cause, rather than me being able to take up theirs.

Tuesday, September 1, 2009

the chart

One of the most controversial things about Applied Behavior Analysis, the therapy we use with Martin, is its use of rewards. Because autistic children don't have the inclination and/or the capability of doing certain things, rewards are used to prompt them. Parents, tutors, and teachers use stickers, treats, words of praise, and whatever else to entice autistic children to do the things they've never done before, like answer a question or use the bathroom.

We have little charts all over the place. There is a general chart with 14 pieces of Velcro. Right now, we're using it at school. Martin gets to put a smiley face button on the chart every time he correctly performs circle time or hand washing or any other school task. The bottom of the chart reads, "I am working for _____." The blank has another piece of Velcro where we can attach an icon for pizza or ice cream or family movie night.

Today, we have a new chart. It has the days of the week listed. Beside each day is a blank space that can be filled in with sad faces. The chart reads, "The Martin and Sasha Chart. I get sad faces when I hit or push Sasha. If I have no sad faces, I can have Mary Poppins." I don't know about you, but I never anticipated that I would be using Velcro, making charts about hitting people, and promising old Disney movies as a vital part of parenting. It feels so strange to make a chart like this. Why haven't all the old standbys worked? We've talked and reasoned. We've given the stern lecture. We've done time-outs and taken away favorite items. We've given a spank or two. But tonight, when I put the chart in his hands, Martin finally seemed to get it. He read the words. He looked at the space beside "Tuesday" and found there were three sad faces for the times he hit Sasha earlier today. He went around the house, repeating over and over, "If I have no sad faces, I can have Mary Poppins."

You might be wondering why we don't make charts for everything. I wonder this myself after moments like tonight. But it would be impossible. Who has the Velcro and poster board and markers on hand in the grocery store when you need to keep your child from knocking over the newly displayed Halloween pumpkins? Who has supplies at the moment your kid refuses to talk to - or even acknowledge - a person they've known for years? Sometimes you just want words to work. But they don't.

If all goes well, we'll be watching Mary Poppins at 7 o'clock tomorrow night.