Saturday, October 31, 2009

fall days

I thought that pictures might convey the spirit of the past two days better than my words can. Our big house switch was framed by a lovely evening at the park where Martin joined some kids in a plan involving lots of leaves. Today's highlights were a Halloween party followed by trick-or-treating. No flashcards necessary.

Of course, Martin dressed as the 16th president.

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Friday, October 30, 2009


Last night, I stood in the kids' room, holding a sleepy Sasha on my shoulder, thinking about all the stuff I had to do before the big room switch on Saturday. My eyes came to rest on the crib and then the quilted wall hanging above it. Log cabin pattern. Bright blues and yellows. Seeing it made me start to cry.

The wall hanging was a gift to us from our church in North Carolina on the occasion of Martin's birth. This was a little church and only recently started. Babies were a big deal. In fact, Martin was only the second baby born into the community. The first had arrived just six weeks earlier. For that little church, having babies seemed like another thing that made us a real community. It demanded the delivery of casseroles to sleepy parents. It required a nursery with toys and church members to hold babies so mothers could get a moment's peace.

That wall hanging, though, reminds me that this little church community was already the real deal to me. Martin just got subsumed into it. My husband and I ate an impromptu dinner with some of those church folks almost every Friday night for several years. They were the first people we told when I found out I was pregnant. Martin was born on a Friday afternoon. Church folks were there a few hours later, bearing frozen custard and ready to marvel at the cone-headed little human who had just arrived. Martin went to church when he was two days old.

We left North Carolina so I could finish my Ph.D. and get a job. I like a lot of things about our life here in Wooster. I have a nice job, a home we're happy in, and a good community. But I miss the folks in NC in the moments where Martin's autism hurts the most. They knew him and loved him from the beginning. They were a community willing to try new things, usually shirking formality. Their openness to others proved itself in its gathering of students, people without permanent homes, professors, prison inmates, health care workers, and anybody else that wanted to come by.

I have this feeling that if we still lived there, those folks would not only tolerate Martin's goofiness, they'd see it as a potential gift to the church. They'd figure out a way to use his massive memory or his strange fashion sense as a way to express God's love. And while this would always be unspoken, I think they'd also see Martin's difficulties as a gift to the rest of them. A gift that offered them the chance to reach out to those with problems. A gift that let them interact with yet another strange and beautiful - yet struggling - person on this planet.

Thursday, October 29, 2009


Every once in awhile, I look at pictures and videos of Martin from 12 months earlier. When you live with kids, it's so easy to overlook the gradual changes they undergo. While I like to be reminded of what Martin used to look like and funny things he used to do, the photos and videos also become signposts of his development.

I looked at some videos from last October and November. In the videos, he never responds to the questions we pose. He doesn't have a lot of his own words. The clips are full of scripts, memorized lines from books, movies, or games. The videos are a remarkable record of Martin's capacity for memory. At the same, I wonder how we ever got through a regular day with a kid who communicated to us only in lines from other realities. How did we eat dinner together? How did we get him to take a bath? Did he know that we love him?

Communicating with Martin still has its frustrations. He's much more willful and likely to say "no" now that he understands the things we ask him to do. He's able to tell us what he wants, as displayed in statements like, "First, ice cream, then cucumbers" or "You can give me a cookie if you like." But I'll take this over what we struggled with last year. Until about December of last year, we could never count on Martin understanding what we said. And we certainly never knew what was going on his mind.

Sometimes, we joke that Martin is not a native speaker of English. While there are problems with that statement, there is truth to it as well. How weird to be in a situation where it feels like you and your child don't speak the same language. At least it's getting better.

Wednesday, October 28, 2009

moving on

As part of the process of moving pretty much everything in the house around, we worked on the basement yesterday. When we moved here, the basement had a great big room, a room that we needed to accommodate my husband's work from home. But the big room was kinda scary. Old brick and wood walls with a 10-year-old paint job. Concrete floor. No lighting. Pipes overhead. We've done a few things to spruce it up so far, but not the thing it really needed, which is a major paint job.

Because we're moving the kids into a bedroom that can fit only their beds and their clothes, we're trying to make the basement into an office and a playroom. Yesterday, we got up at 6 and primed the two brick walls. It took a gallon and a half of primer. After the kids went to sleep last night, we painted the other two walls a creamy color. We'll do the same to the brick walls in the next day or so. We're also cleaning things up, moving toys, hanging up some art to make it seem like a happy place.

Yesterday, Martin woke up just as we were finished with our morning painting. He wanted to help. When we told him we were done, he happily moved on to toast for breakfast. Throughout the day, he showed few signs that the impending change – which I’ve told him about – stresses him at all. He worked well with his tutor. He even interacted with a potential tutor we interviewed. With the promise of a reward, he tried on part of his Halloween costume (an Abe Lincoln coat) and practiced trick-or-treating. We went out for ice cream and he was perfectly pleasant to the cashier and gave his leftover cone to Sasha.

However we manage home schooling, I’m committed to doing it in a way that doesn’t put more stress on Martin, my husband, or me. Martin will be happier and we’ll be happier. None of us is the kind that takes stress well. We wear it on our sleeves, acting rather irritable. So if I ever sound like were stressing over this new process, tell me. Tell me to cut it out, to lay off, or to have a glass of wine. It’s OK so far and I’m gonna do my best to keep it that way.

Monday, October 26, 2009

in motion

We've made the decision and Martin is coming home. His tutor got another job. It's difficult to imagine introducing another tutor to Martin and his school. School at home seems to take the pressure off all of us, especially Martin. So we're in a big transition here. It's the last week of school and we have lots of prep for beginning home-school next week.

The biggest changes are physical. We have to accommodate a home-school space in our house. The current plan involves making the school room in what is now my bedroom. My husband and I will move downstairs to the kids' room. They move into the guest room. I'm not sure where the guests will go. Maybe my friend's B&B down the street? The big switcheroo will happen this Saturday. You're all invited. I'm making sour cream coffeecake.

The other big challenge is curriculum. My husband plans to do an hour of academic work with Martin. We're counting on a new tutor to do about 4 hours of autism therapy, mixed in with some academic work and social skills games. I'm in charge of some music, inviting friends over to play, and physical activity. This is the initial plan. But we've learned that planning can get you only so far. It might look totally different by Christmas. Martin might be splitting his time between disco lessons, the study of ancient Egypt, and fencing.

While the whole thing is a little daunting, I'm more relieved than anything. We've been trying so hard to make school a good place for Martin, his teachers, and his classmates. While it might have gotten better if we gave it two or three more months, it's hard to put everyone through it.

We don't know what were in for. We have some friends that home-school. I've read Mitchell Stevens' wonderful sociological study, Kingdom of Children, on homeschooling families and their various politics. But I know nothing about the day-to-day experience. I guess that's not such a big deal because I didn't know what getting married would be like or what having a baby would entail. Those things have worked out OK. By that reasoning, though, I could end up on a spaceship with aliens tomorrow because, hey, it might be interesting.

Sunday, October 25, 2009

fun or not fun

Traveling with an autistic child is always a gamble. The old standbys (ie. the grandparents' houses) usually work out pretty well. But even trips to the most familiar places sometimes involve massive meltdowns. New destinations are even more dicey. We can head for a zoo full of animals while promising stops for ice cream along the way. Sometimes it will work and sometimes it won't. Every trip involves careful calculation and management. Just how much change can Martin manage, if not enjoy, on any given day?

I just returned from a short visit to see Martin's grandparents, along with lots of our Pennsylvania relatives who had gathered at their house. Martin had a bunch of second-cousins to play with. His enjoyment breakdown went this way: 25% of the time thoroughly enjoyed, 15% of the time out-of-control with frustration and anger, and the remaining 60% somewhere in the middle. Seeing him laugh and have fun as he and his cousins tried to break into a gumball machine was a real treat. He was joining kids he doesn't know very well in a new adventure. But balancing moments like that with Martin's breakdowns over a lost presidential flash card and his inability to sit down and eat a meal with everyone made the trip a little hard for me to take.

I always imagined I'd take my children on fun little adventures, but we haven't gone camping in two years. We haven't taken Martin along when we've tried anything outside the circuit of relatives and close friends' houses. Martin and my husband stayed home last December when we performed my grandmother's funeral mass and burial service. We're not sure we'll be able to attend a bi-annual reunion with graduate school friends and their families. To make these sorts of trips means exposing ourselves (and our friends and family) to the possibility that Martin will be miserable and will make the rest of us miserable too. But not going comes at the cost of not finding out the new things Martin can do as he grows and develops. It's a tough situation. And the stakes always feel high. Who wants to travel a long way, spend money, and hope for a little relaxation with the underlying fear that you have about only about a 50% chance of having a good time?

Martin had a pretty good time this weekend. He'll remember the gumball machine. He'll talk about his second-cousins over the coming weeks. He always seems to forget the tantrums. It's a little harder for me to forget the unpleasant moments. While Martin had fun, I had fun and not fun.

Thursday, October 22, 2009


Last night, Martin decided to play with my hair. He pulled it up, messed with it, wrapped it around my face. After concentrating on placing a few strands in the right place, he looked at me and said, "Now, you are George Washington." I initially interpreted this statement as one more dose of Martin nonsense. Then I realized that he was trying to get my hair to look like Washington's hairdo on a particular set of flashcards. I played dumb and asked him to keep going. He moved my hair around a bit and said, "Now you are John Adams."

Over the course of 15 minutes, he moved my hair around in the style of the 44 presidents. Some of the highlights included Andrew Jackson's severe updo, Rutherford Hayes' beard, and Bill Clinton's nearly feathered look. The best moment was the transition to Woodrow Wilson. "One moment, Mama, I need to get something," he said. Martin ran to his dress-up box and returned with a pair of sunglasses. He placed them on my face. He looked at me, puzzled, something still wasn't right. He put his hands on the side of his face, squished his cheeks, and pressed his lips together. "Mama, just go like this." I followed his instructions. Then Martin quietly moved on to Warren G. Harding.

If I take the time to look, I often find patterns and order in Martin's seemingly random actions and words. Why does he want 6 pieces of pepperoni? Because last time he had 6 and he remembers it quite specifically. Why does he refuse to take turns playing the autoharp with other kids in Sunday school? Because he remembers the order they went in the week before and this week's is different.

Maybe I'm strange for letting all of these details slip by, rather than tucking them away in my brain. Or maybe Martin and I are just different from each other and neither of us has to considered all that strange.

Wednesday, October 21, 2009

stand and deliver

Every once in awhile, a person's completely reasonable and innocent comment about something else altogether brings Martin's autism into dramatic relief. Take for instance a conversation I heard about new folks in our neighborhood. Someone mentioned a new resident, very studious, living in a nearby tiny house. She related her efforts to say hello and be welcoming to the new neighbor, along with the strange rebuffs she received. "She just looks away from us and walks on. It's so weird." She's right. It is kinda weird. Maybe even rude. But the first thing I thought was that the new neighbor might be on the spectrum. Maybe it's really hard for her to look into the eyes of a stranger and say hello.

I don't mean to read everything through the lens of my kid's condition. The new neighbor might just be rude or weird or both. But that relatively innocent conversation - in which the speaker expressed a natural reaction to the situation - reminded me of how fraught new interactions can be. I am so used to all of Martin's strange habits. Once you get used to them, they become quite charming. But there's a world full of people who Martin has yet to meet. And most of them will expect the standard social graces. It's not clear right now that Martin will be able to deliver.

Tuesday, October 20, 2009

school - again

I'm really good at school, but I think it is stupid. The older I get and the more kinds of people I know, I've cultivated an increasingly skeptical attitude toward K-12 education. I just can't believe we push so many people through institutions so unsuited to them. I'm continually amazed that everyone is judged on the same scale: can your kindergartner skip, can your third grader read chapter books, does your middle-schooler understand Fahrenheit 451? I'm not sure Martin will ever skip, but I think he'll be into light sci-fi novels in the next 2 years.

I've known some very cool homeschooled kids. My friend, Helen, just graduated from Temple with a degree in dance. Her brother, Jon, plays baseball in college. My friend, Luke, is in his last year of homeschooling and plays in a nice little rock band. They are nice, interesting, well-adjusted, and talented kids. None of them exhibit the stereotypes about homeschooling. They are far from socially inept or freakishy focused on particular topics.

But when I began to think about why people worry about homeschooling, I realize that their fears are about things with which most autistics struggle. Martin is somewhat socially inept. He is definitely freakishly focused on things (right now it's state birds). So I'm wondering if homeschooling would be the worst thing we could do - because it would cater to these propensities - or if it would be the absolute best thing we could do - because we could acknowledge them and address them with a personalized curriculum.

These reflections stem from my deep concern that Martin (at least now and for who knows how long) will not fit in at school. That he will never be a natural follower of classroom routines. That he will never recognize that there are social expectations he is supposed to fulfil.

Maybe it's time to come home.

Monday, October 19, 2009


About two or three times a year, I leave Wooster and travel to academic conferences. I just returned from one last night. These trips - while usually fun and intellectually stimulating - have challenged me in two particular ways. First, until recently I've had difficulty knowing what to say about Martin to my colleagues. And second, again until recently, Martin never showed that he missed me when I was gone.

I'm not sure why, but I'm finding it a lot easier to talk about Martin's situation. I think I used to be afraid that revealing his autism to others would make them uncomfortable, or that my explanations would be confusing, or that they would feel sorry for either him or me. It's not easy to reveal that your kid has a disability, explain its details, and show that you're OK with it at a conference cocktail hour.

A few things have happened that have made this better for me. I've realized that if I can talk about Martin's autism comfortably, I have a much better chance of making others comfortable when they hear me mention it. I've also gotten better at offering short descriptions of Martin's particular case. Most important, I've figured out that talking honestly about my own life is an invitation to others to do the same. It's a form of resistance to a professional culture that works on us all, one that urges us to present our lives minus their ambiguities and difficulties.

It's also gotten easier for me to travel away from home because Martin has begun to show that he misses me when I'm gone. On Thursday, I told him I was heading for Indianapolis. He told me I should stay in Ohio. While I was gone, he told my husband repeatedly that it was time to go to Indiana. I'm sure I would figure out how to live if Martin showed less affection, but I have to admit that Martin's recent ability to express himself this way has meant a lot to me.

So, it's very good to be back.

Thursday, October 15, 2009


Last night I walked from our church fellowship hall, where I had just eaten dinner, across a parking lot to the main church building. Martin had headed over there as soon as he finished his meal. I expected to find him tucked in a corner of his Sunday school room reading Curious George books. Instead, I opened the doors and heard his voice calling out, "6...7...8...9...10. Ready or not, here I come!" There were children zipping everywhere, finding spots to hide. A few seconds later, Martin ran around the corner. "I'm looking for the kids, mama," he yelled. And then he disappeared up a staircase. I couldn't believe it.

Though I usually don't try to understand these things (not because I'm not interested, but because they are mysterious), I really want to know why Martin could play hide-and-seek with a dozen kids last evening when he can't seem to make friends easily in his kindergarten class. He sees those kids every day. They are closer to him in age. They have tons of activities they could do together. Instead, he feels more comfortable roaming the church halls, chasing and being chased, yelling at the top of his lungs.

I often wonder if we're doing the right thing by not pressing Martin too hard to learn classroom routines. Some folks urge us to push in that direction, out of concern for his ability to continue in school. Out of concern that most of us, someday, have to learn to play by the world's rules if we want to find educational accomplishment and a job. But this path is something I've always questioned, even before I had a kid on the spectrum. Having an autistic child brings all of these questions into sharper focus. If we want him to find that sort of success, it will take a lot more work. On the other hand, if we're willing to let him be himself, we have to commit to being there to support him if the world isn't exactly accepting. It's hard to know what to do. But to invoke Niebuhr (and I do this begrudgingly because I think he's wrong, wrong, wrong on so much else), ethics is not figuring out what to do, but figuring out what is going on. That, to me, seems hard enough.

Tuesday, October 13, 2009

like a what?

I just read a profile in the online version of Beef Magazine (something I never imagined I would do). The article was about an upcoming HBO movie about Temple Grandin, who has been called everything from the "woman who thinks like a cow" and "the most famous autistic on the planet." She did not speak during her preschool years. Most people thought she'd spend her life in an institution. Instead, she took her very peculiar brain (she feels a deep kinship with animals - to the level that she believes that she understands how animals experience the world) and found a way to do what she loves and what she's good at. She revolutionized the American slaughterhouse so animals' final moments are not traumatic. She teaches animal science in a university. She dresses like a cowboy.

I grew up in the 70s, before multicultural curricula and efforts at political correctness made an impact on Indiana elementary schools. I heard the classic story of American life that involved white-haired presidents, machine guns, and paeans to prosperity. It's a different world now, a world where my son might see a fairly mainstream movie about a person who shares in his struggles. It's a world where every Columbus Day brings the streams of public protest about the other side of the story. Martin will sing not only Christmas songs in school choir, but probably a Hanukkah number and maybe something about Chinese New Year.

I'm an adult and I find myself thankful that my experience of difference (having an autistic child) can be part of popular discussion and reflection. How much more important is it for children to see these things and know they are not alone. I'm glad I live in a time where a woman who thinks like a cow garners serious public reflection on her experience. The 1970s might have had some killer polyester and fabulous album cover art, but I'll take today.

Monday, October 12, 2009

go already!

So Martin's tutor had a job interview today. She's overqualified for the work with Martin, so we aren't terribly surprised. But it did switch us into "education panic mode." Because we took a state voucher for Martin's education, we are responsible for making it happen. If tutors quit, we have to find new ones. We have to train them. We have to make sure their fingerprints are on file and that they don't have criminal records. We have to pay them. I find all of this stuff difficult. I studied the humanities. I was told there would be no math.

So, once again, I express deep-seated wishes for a nation with a stronger social safety net. A country where one doesn't have to choose between inadequate public school programs and the all-consuming task of directing a child's special needs education. And I at least have the option for financial support for my efforts to educate Martin. Most states have neither adequate special needs offerings nor vouchers for do-it-yourselfers. Do I really live in the richest nation in the world?

Really, people, how come the revolution hasn't started yet? How much crappy healthcare, education, and social welfare programing can a population endure? Have you contacted your representatives about any of these pressing matters? If so, thank you. If not, stop sitting on your hands. We might be in the midst of a week where talk is dominated by what hasn't been done yet, the things this administration has not yet achieved. So get out there and let them know that you want positive change.

(And since I, too, have seen that awesome slideshow of conservative protest signs with staggering spelling errors, here's a polite reminder to make sure to spell and grammar check!

Sunday, October 11, 2009


Martin's outfit for church: red sweater with a white snowflake, khaki shorts that he has sorta outgrown, and purple rain boots. If he had donned either a tool belt or an Indian headdress, he would certainly be mistaken for a member of the Village People. Instead, he wore his boots (on a day with no rain in sight) to Sunday School.

I sometimes wonder if we should bring up our autistic child in New York City. Martin's outfit would hardly register in a place where I've seen a guy with a snake wrapped around his neck on the subway and a woman transporting a chicken on the bus. I imagine him walking down the streets of New York, presidential flash cards in hand, with the blissful experience of no one really caring that he is weird.

But we live in the Midwest, in the rural Midwest. The kind of place that artists escape from only to write about the crushing experience of conformity-driven communities. An environs where things are done a certain way because they have always been done that way. So why make adjustments for a disorder that few people even heard of before 10 years ago?

The thing about the Midwest, though, is that it's pretty easy to establish community. I'm not saying you can't do it in New York, but that it takes longer and you have to try harder there. Further, community here is never perfect, the intolerance of difference being a prime example. So people at church might find Martin pretty weird, but they have brought me casseroles on several occasions. They pray that our lives will get easier, that Martin will progress and be happy.

Because I took a job here before Martin was diagnosed, the decision was already made for us. But it is something we'll have to consider in the future. It will definitely face Martin as he develops independence from us. But I wish I could whisper in his ear along the way: "There are places where no one will look twice at your funny outfit. And there are others places where people will show you they love by bringing jello. Neither is perfect. You'll just have to choose."

Friday, October 9, 2009

wisdom of the flemish

Tonight, my awesome neighbor brought over a movie for us to watch after we stuffed our faces full of homemade pizza. The movie, Ben X, is a Flemish film about a teenager with Asperger's Syndrome. It's very dark, as much about bullying as it is about the autism spectrum. Without ruining the ending, I can say that I learned one thing. Every one of us who is "typically developing" (or normal in a variety of other ways) needs a regular dose in other folks' perspectives. The film brought me into Ben's world, a place in which loud noise, brutish people, and stupid conversations bring him nothing but pain. It also showed me the power in typical people willing to listen to, embrace, and acknowledge the experience of autistics.

This lesson, of course, can be taken in lots of directions. I don't need lessons in adapting myself to only autistics' worldviews, but also people with mental illness, or physical infirmity, or anything else that makes them feel set apart.

So, thank you, neighbor, for bringing over this movie. Thanks for showing it to your typical kids. Thanks for reminding me that my world is not the world. Who knew that anything so striking had emerged from the Flemish since the Lowland artists in the realist tradition?

Thursday, October 8, 2009

bringing up baby

For the past few weeks, Martin has sometimes pretended to be a baby. This involves wrapping himself up in a blanket and saying, "I'm a baby. I need to feed." It's funny, he never talked about nursing - let alone asking to be nursed - when I was actually feeding his little sister several times a day. He didn't seem all that interested. But now, months after I stopped nursing the real baby in the house, Martin has requested that I feed him, as he calls it, "the milk in your body."

I can't quite figure this out. I tell him that three things keep me from nursing him. 1) He is not a baby. 2) I don't have milk in my body anymore. 3) Even if I did, American 5-year-olds get their milk from cows or soybeans, not their moms. Martin never seems upset that his request is declined. He takes it in stride. But it always resurfaces a few days later. So I hold him like a baby in his blanket. I ask him why he wants to be a baby. I usually get a strange answer, such as, "Babies are dangerous" or "Babies are ridiculous."

We have a lot of moments like this one, moments in which Martin clearly is reaching out to us. Where he's bringing his own emotions and needs right to our door. But they don't make any sense to us. It's as if a weeping, emotional person came up and spoke to you, convincingly, in Mandarin Chinese. Sure, it might mean something, but not to you.

So I have two babies in the house right now. I snuggle them a lot. And I give them food, although not from my body. Most of then time, I understand what the littler one wants and needs. But the bigger one, I'm not sure I understand everything about him. But the fact that he wants to be my baby makes me keep trying.

Wednesday, October 7, 2009

i've got a henry

Every parent faces the force of their kid's incredible will. Children's ability to scream, whimper, refuse to move, and fall to the floor like a Birmingham protester is shocking, especially as these moments are prompted by seemingly insignificant desires. Can going home now instead of 5 minutes from now really elicit a 9.7 on the tantrum Richter scale? Yes. Can running out of pretzels usher in the a meltdown so seismic that readers of the Scofield Reference Bible will think the end has come? Yes.

Martin has fits and tantrums and meltdowns like any other kid. But autism changes the dynamics. It affects the way things bother him and his ability to handle being bothered. It also affects how we must react. As Martin has developed verbally, it's easier for him to talk about what upsets him and we have a better time comforting him. But we still have moments where everything comes unhinged and there is no comfort to be had. He just doesn't understand why tonight's walk only goes around the block when last night's walk ended at a park. He is undone when going to the zoo last Saturday does not mean we're going to the zoo this Saturday. Sometimes we can explain it and he seems to get it. Other times, like on tonight's walk, it provokes only sadness, then insistence on his way, then yelling, and then the protest that includes laying flat on the ground and screaming against the universe's injustice.

Two years ago, even one year ago, I always knew that - in moments like these - Martin just didn't know what was going on. He was frustrated and confused. But now, I'm pretty sure Martin understands, he just doesn't like the reality he has apprehended. And because I've only ever been his parent, I can't tell if he does this at a rate that's fairly normal or if we have a boy with a great talent for non-violent resistance on our hands. If it's the latter, I'm happy to send him out to protest the world's evils in their many formats. But really, I'm not up to it when it comes to humdrum things like what's for dinner.

My life feels like that Far Side cartoon where the young Patrick Henry sits at the dinner table and says, "Give me peas or give me death." I thought that was funny. I don't think I noticed Patrick's frowning mother sitting next to him.

Monday, October 5, 2009


When kids have language delays, they often qualify for special education services. Whether the child is school-age or younger, these services usually are coordinated by the public schools. Parents of special-needs kids go to long meetings. The kids go through even longer evaluations. In the end, the district and the family come up with an IEP, the individualized education plan. With an agreed-upon plan, teachers and service providers work with the child to get them to age-appropriate language.

When I first went through this process with Martin, I was completely bewildered. There was terminology I didn't understand. They referenced therapies I had never heard of. But most strange to me were the "measures." IEPs include measures for evaluating a child's progress. We can't know if a kid is getting better unless we propose a goal and figure out if they achieve it. In Martin's case, one of the early goals was for him to answer questions, the simple yes or no variety. The IEP also had a measure for this goal. "Martin will answer yes or no questions 60% of the time without a prompt and 80% of the time when prompted." That was the goal: a child who would still be silent 40% of the time. And we had to measure it. I found it very painful. For me it became not a measure of progress, but a constant reminder of my kid's abnormality.

Later, after months of work, a new goal was conversational turn-taking, or the ability to go back and forth in a conversation. The goal was for Martin to be in conversations with 2 or 3 turns. A 2-turn conversation might be "Martin, would you like some milk?" "Yes." A 3-turn conversation might be "Mama, what are you doing?" "I'm sewing." "Sewing what?" The goal was for Martin to do 2-turns conversations 60% of the time and 3-turns 40%. Again, that was the goal. Hitting our mark still meant endless conversations in which Martin could not take a turn, moments when there was no way of knowing what he wanted or how he was feeling.

Things have really changed for Martin. He still has an IEP, but the goals are different. Conversational turn-taking is off the plan because Martin does so well at it. Most of the time, he responds to questions. He still has moments where it's clear that he's confused, but nothing like two years ago. I've also stopped looking so much at the goals and the measures. They always made me feel negative. This makes me wonder how my students feel about the grades and paper comments I give them?

Sunday, October 4, 2009


This morning Martin asked me if I was Harry S. Truman. There are other presidents I'd prefer to be compared to, so I wanted to figure out why Martin asked me about Truman in particular. "Because you're wearing glasses," he told me. I realized that Martin knows which presidents needed glasses, sported beards, and dared to wear mustaches.

At the same time he's showing this new level of detailed interest in the presidents, he's also keen on sign language. I find him sitting in a room by himself, quietly singing and signing songs such as "Love in any language" and "I've got peace like a river." He seems to find the motions very soothing. I'm wondering if we could use more signs around the house to help him understand complex instructions or woo him into trying new things.

Most important, I think these new interests signal that Martin is not strung out anymore. The stresses of losing one tutor, getting new ones, starting school, and almost getting kicked out of school just might be behind us. And since they are, Martin has the freedom to let his mind wander, to find new things to do. He can apply his mind to greater knowledge of the things that fascinate him: presidents and signs. Because he has the space to do this, I find him a little more willing to take chances with us. Today, he helped me bake cookies and didn't freak out when I messed them up and they didn't taste good. He thought it would be fun to eat them even if they were a little crusty and difficult to get off the sheet.

A Truman Doctrine approach to autism won't get us anywhere. If it's our world against his (Truman's democracy versus Soviet communism), we're bound for a fight. So no, Martin, I am not Harry S. Truman.

Saturday, October 3, 2009


As a reward for an entire week of good behavior at school, I took Martin out for cookies and milk Friday afternoon. We went to the bakery downtown. Martin ordered a chocolate chip cookie for himself and for me. He thanked the cashier when she arrived with our snacks. As we left the bakery, he shouted goodbye to everyone in the store. We headed out into a chilly, rainy afternoon. I was planning to go straight home.

But Martin tugged on my sleeve and said, "Let's go to Barack H. Obama's White House." By that, he meant the Wayne County Court House that stood just a block away. Since we had no plans for the afternoon, so we walked over. "Do you think it's full of presidents?" Martin asked. Not sure how to explain that most of the presidents are dead and that none of them live in Wooster, I replied that we could look for them.

We entered the building, stepped through the metal detector, and saw three men talking together. One of them had signs of male pattern baldness. "Hello, Gerald R. Ford," Martin called out. We walked down the hallway to find a huge oil painting of General Wayne, the man our county is named after. "Oh," Martin sighed, "It's a president." Which one?" I asked. "Andrew Johnson, of course." I had to admit that Wayne looked more like Johnson than any other president I could think of.

We continued through the building. Martin gave me a guided tour. "There's George Washington's office," he said as we passed by the judge's chambers. "There's George W. Bush," he said as we walked by a middle-age white man. We walked by a woman and Martin wasn't sure what to say. I tried to tell him about Geraldine Ferraro and Hillary, but he didn't seem interested in those who didn't win the elections. As we walked out the door, Martin called out to the guards, "Thank you for looking at the White House." They seemed mystified, but smiled and waved.

My husband and I are always devising rewards for Martin. Prizes for good behavior, trying new things, or using the toilet. But I struggle when I realize that our reliance on rewards means that we are constantly pressing him to do things that are not comfortable for him. And if we relax a bit, if we let him lead us, he will take us places and give us little White House tours. It's like a reward he gives us for chilling out and letting him be.

Thursday, October 1, 2009

dr. vlasits

When days at school are good, it's easier to reflect on parenthood's lovelier moments. Today, I came in from a run just as Martin and his tutor were finishing their work. Martin rushed over to me and asked what I had been doing. "I was running," I said. "Are you OK?" he asked. "Yes," I replied, "but my legs are sore and I need to stretch them a bit." I walked to another room and sat down to stretch. Martin followed. "Mama," he asked, "are your legs hurt?" "Well," I answered, "they hurt a little." "I'll just give them a kiss," Martin said as he gave me a kiss on each knee. "I think you just need to lay down," he said, as he grabbed my hand and led me toward his room. He pulled back the covers and motioned for me to get into bed. After I laid down, he covered me up, turned off the light, told me that I would feel better soon, and walked out the door. He left me, staring at the ceiling, wondering why any of us ever think that something is wrong with him.

If only all our doctors and nurses showed us such tenderness and concern. If only the rest of us showed such regard for autistics and their particular ways of interacting with the world.