gimme

My life would be good if I had a bowling alley in my basement. Or a children's library. Or wheelbarrows full of snow. Or a candy shop. Martin loves all these places. Excursions to these sites make for good days.

But excursions are special moments. Martin spends many more hours of his days in our house or at his school. And somehow, he often seems bored at our house. Or at least he makes demands that make me think he is bored. "Can I watch The Muppet Movie?" "Can I play Starfall on the computer?" "Can I watch the Veggie Tales Silly Songs?" You would never know we have a house full of books, puzzles, games, and toys - along with a set of parents and a sister willing to play with him. It's a bad pattern. The moment Martin tires of an activity he demands screen time.

The only release from the constant requests for screen time is an excursion. But the need to leave the house becomes its own kind of tyranny. I must admit I'm getting a little bitter about it. Why can't he spend time racing Matchbox cars down ramps or reading books or playing kitchen with his sister? This is a child who used to occupy himself for hours (I'm am not exaggerating) and now he can hardly manage ten minutes.

In my better moments, I try to figure out why he's struggling to occupy himself. I find new things to do under our own roof or take new trips out of here. On Saturday, we bowled in the antique lanes in the basement of the college's student center. Martin got a lane to himself and threw the ball 100 times (again, I'm not exaggerating). Martin takes his bowling techniques from shot-putters. He was, therefore, exhausted by the end of our time. It was great.

In my lesser moments, however, I just get frustrated and mad that a 5-year-old owns my life and seems completely ungrateful for anything less than a trip to the candy shop. Am I awful to want a "thank you" for the awesome chicken enchiladas I made or for the Matchbox car ramp I set up or for finding the lost pink octopus again? Maybe not awful, but unrealistic. Maybe not the parent I thought I would be, but a regular human being.

say what?

The sleeping arrangements have only gotten stranger. The laundry basket is back in its proper place: beside the dryer in the basement. And for a few weeks, Martin slept in his bed like a normal human being in the Western hemisphere. But now, in a moment inspired by Gandhi or some other spiritual purveyor of physical discomfort, Martin is sleeping on the floor.

This floor routine has been going on for a little while. Tonight, it got even weirder. Martin rolled up a little blanket, shoved it into an empty Tinker Toy container, and laid down on the floor. Then he pulled the blanket out, looked up at me, and said, "I want to sleep in this can." The Tinker Toy can is about 14 inches high and 6 inches in diameter. Even Gandhi wouldn't fit in that can. So Martin decided he would sleep with his feet tucked into the can. I can only hope there's no need to escape the house in the dead of night because the poor child would have to hop out rather than run.

I think I've finally given up trying to push Martin to do certain things. I don't make him eat more than plain bread and applesauce at church dinners, even though it's a place where a robust appetite is considered a theological virtue. I don't make him dress in ways that are weather-appropriate and somehow he has avoided both heatstroke and frostbite. Giving up normality has not yet brought me peace of mind, but it has made both me and Martin a little happier.

this is only a test

I decided to put my new shopping strategy to the test. Could I take Martin to a store without a pizza station? Could I get him to shop without the promise of pizza? Last night, we went to a sewing store.

Even though I'm not great with a needle or machine, I really like sewing and sewing stuff. Maybe it's because I grew up running around my grandmother's quilt shop and the adjacent sewing shop run by my aunt. I liked running my hand across bolts of fabric lined up in long rows. My siblings and I used to hide under quilts placed across long racks. I wondered if Martin might have a similar fascination.

So we drove to the sewing shop, although this one was quite different than the one owned by my aunt. Along with material and needles, it has craft supplies and holiday decorations and even candy. Martin and I walked in and he walked immediately to the Easter display. "Look at all these toys," Martin said in amazement. "Yes," I replied, "apparently Jesus really liked toys."

I let Martin lead me through the store for a little bit. He moved from the Easter decorations to a huge window that offered a funny reflection. Then he looked at the Valentine's Day clearance rack. Then I asked him if we could look at the thread. While I looked for the color I needed, I asked Martin to name the colors he saw. When I picked up my spool, Martin said it was time to go home.

I'm realizing that I just have to give Martin a little more time. Too often I rush around with him, trying to run my errands as if he wasn't there. No wonder he resists or asks for things or complains. How could that time be enjoyable if he has no opportunity to turn it into something he might like? It made me think back to my grandmother. She was trying to get her work done, trying to make beautiful quilts, with a bunch of grandchildren running underfoot. She could have made it hard on us. "Don't touch the quilts. No drinks in the store. Stay quiet." But she didn't. She let us turn her store into our playroom. And somehow, I have only happy memories of being in that tiny store for hours at a time. So I guess it's time to slow down with Martin. Time to appreciate the terrible Easter decorations. Time to name all the colors of thread.

boots

We're always trying to figure out how much we should try to live a "normal" life and how much we ought to accommodate Martin's world and make life easier for him. The former has the advantages of challenging Martin to try new things and feel a sense of achievement when things go well. It also involves meltdowns and catastrophes. The latter offers security, but means that we aren't helping Martin continue to grow and live out his life in the world.

The long, unstructured hours of Saturday and Sunday can be a time especially fraught. Should we let Martin do what he wants all day? Or should we try to do the things our family needs to do no matter if it will be tough for Martin? I'm finding that a little of both is necessary.

For instance, Martin needs new rain boots. He hates snow boots and has, instead, worn rain boots every day since the weather got cold. His poor old boots (purple hand-me-downs from a cousin) were getting cracks everywhere. Even the bottom of one had a large crack, causing immeasurable sock sogginess.

Going to buy new boots is no simple task. It involves cajoling Martin into going to a store, trying on items, and waiting in line at a cash register. Although those things might sound routine, for some reason Martin can hardly manage them.

Wooster doesn't have a wide array of stores. Our boot options were limited to K-Mart. Our family drives by the K-Mart about twice a week. Every time, Martin reads the K-Mart sign and the words below it: Little Ceaser's Pizza Station. Imagining it to be like some sort of train depot, Martin always talks about stopping at the pizza station.

This afternoon, I told Martin that I was going to K-Mart. He asked if he could come along and go to the pizza station. I said that we would first have to try on some boots. "No boots," Martin replied, "Just pizza." I came right back: "First boots, then pizza station. I'll make a list." I then took a piece of paper and wrote down the 4 steps of our trip. Riding in the car. Trying on boots. Going to the pizza station. Going home. Martin looked at the paper and said, "OK."

In the car, Martin held the piece of paper with the steps. When we got to the store, he said, "Let's go to the pizza station first." "What does the list say?" I asked. "Oh," said Martin, "try on boots next." We walked back to the shoe department. Martin initially insisted on trying on a pair of women's black boots with pink polka dots. Then I handed him a pair of navy blue boots with green trim. He tried them on, walked up to the register, and stood beside me as a paid. He told the check-out girl, "Now I'm going to the pizza station." I bought Martin a revolting-looking piece of cheese pizza. He loved it. After he gobbled it all, he took my hand and we headed home.

I have to remember that with a few adjustments and a $1.50 pizza budget, I can have a better time with my kid then when I insist on making him do everything in a way that adults would find reasonable.

a fit

Martin told me all about the fit he threw on his field trip. His class visited Walmart to learn about buying things in stores. (I guess they also could have learned about oppressive wages and outrageous pricing tactics, but maybe that's just me.) We sent a dollar along with Martin so that he could buy an apple. As with his trips to the grocery store, Martin picked up an apple and began to eat it. At the grocery store, the cashiers let him eat the apple while we shop and then we pay for it at the register. Not so at Walmart. Martin's teachers asked him to wait, which was perfectly reasonable. But Martin threw a fit.

The thing that amazes me is that Martin told me the whole story. He told me about picking out the apple. He told me that his teacher asked him to wait to eat it. He told me that he started to eat it. He told me that the teacher asked him to stop and that he began to "have tears." He told me that he threw a fit and that the teacher took him out to the bus to wait for the other kids. He told me all these things. This is a kid who could hardly answer "yes or no" questions a year ago.

He also told me he was still upset when he returned to school, that he pushed over a chair and stubbed his toe when he tried to kick it. "My toe is all gray," he said. His toe wasn't gray, but I think that was Martin's way of telling me that his toe hurt. He told me that his teacher talked to him about kicking things and that she "she took away four computers," which means he lost some of the computer time (measured in little computer pictures) that he had formerly earned.

He told me all of this. And he even teared up again during the telling.

I'm sad Martin had to go back to his bus and hurt his toe and lost computer time. But I'm thrilled he could relate such details, that he could tell me his feelings, and that he doesn't seem to hold a grudge against his teacher for her very reasonable efforts to maintain order. So often I feel like Martin will never catch up in the realm of language, that he will always struggle to communicate. But yesterday proved to me just how much progress he is making.

asperger's chic

I've always been turned off by what I have come to call Asperger's Chic. By that I mean the fascination that people off the spectrum have with people on a particular part of the spectrum, people with the Asperger's label. People off the spectrum are amazed by some of these folks' ability to memorize, how some of them have keen senses of sight or hearing, or the way they can do their own thing in the face of what seems to the rest of us to be oppressive and aggressive forms of popular culture. Those lucky folks with Asperger's. They remember everything. They see everything. And they don't give a damn.

The New York Times recently ran an op-ed piece about the new edition of the DSM, the Diagnostic and Statistical Manual of Mental Disorders: http://www.nytimes.com/2010/02/10/opinion/10grinker.html?scp=10&sq=autism&st=cse In the new version, editors have removed labels such as Asperger's and PDD (pervasive development disorder) in favor of the more general term, autism spectrum disorder. The editors reasoned that the labels obscured as much as they illumined. They were wrong as often as they were right.

While many clinicians welcome this move for these reasons, the author of the editorial piece hailed it for another. The writer, the father of a daughter who had received the Asperger's label, thinks its time to get over what I call Asperger's Chic. He called out his readers to stop understanding this part of the spectrum as the good part and the other parts as devastating. He asked his readers to interrogate their impulse to see Asperger's as the cool sort of autism.

I have some sympathy with the writer. I cringe when people congratulate me on my child's early reading or his capacity to memorize all the presidents. I get riled when people assume that it's great that my kid will be insusceptible to some of our culture's lower offerings. But think about it for a moment. Wouldn't I rather have a kid whose brain works?

Because I feel this way, I hit the roof when I read the editorial's last lines: "We no longer need Asperger’s disorder to reduce stigma. And my daughter does not need the term Asperger’s to bolster her self-esteem. Just last week, she introduced herself to a new teacher in her high school health class. 'My name is Isabel,' she said, 'and my strength is that I have autism.'”

Isabel, I'm glad you feel that way, but I don't share in this perspective. Or maybe I should say that I cannot see autism as an unqualified strength. There's no way to utter that sentence without also acknowledging all of the difficulties, all of the struggles, all of the ways that a goofy brain can be both fun and maddening. I would never want Martin to feel that he has some sort of terrible weakness. And I acknowledge the way his particular brain might find interesting and unexplored ways to interact with the world. But not without missteps. Not without pain.

Will getting rid of Asperger's Chic just lead us to Autism Chic?

the snowy day

It was a snow day in Wooster. Another day of school called off after Friday students were dismissed for parent-teacher conferences and yesterday they had off for President's Day. Some people might love the thought of a 5-day weekend sipping hot chocolate in the casa. But autistics like their routines. Three days of cancelled school can mean big trouble.

I dreaded telling Martin there was no school today, but he seemed to take it in stride. In fact, he spent most of his day in his pajamas, playing with Sasha sometimes and going off on his own at others. At 3:30, he got dressed for speech therapy and we braved the snowy streets to get to his appointment. Martin signed himself in at the therapist's office.

Our day was not like the Ezra Jack Keats book. There were no snowmen. The snow we have is actually too fluffy for packing into balls. There was no long session of outdoor adventure followed by a warm bath and the innocent hope that a snowball might make it through the night. But it was a day in which Martin seemed relatively happy. He had time to play his own games. He had a speech appointment he enjoyed. And he arrived home in time for a session of sidewalk shoveling that he greeted with great enthusiasm. I had worried that our version of A Snowy Day might be subtitled, "A Family of Cranks is Undone by a Blizzard." But it wasn't so.

Lucky us!

charts and trouble

We have a new chart. It connects Martin's behavior to the privilege of playing his favorite computer game called Starfall. The top of the chart reads: "Can Martin play Starfall today?" The days of the week - followed by spaces for "yes" and "no" - run down the side of the chart. If Martin knocks over his sister, slams a door, or yells, we put a check in the "no" space for the next day of the week. With a spate of good behavior, Martin's 30-minute allotment of computer time goes ahead unimpeded.

I made the chart after Martin plowed over his sister for no apparent reason. For about the 1,000th time. I showed him the chart, talking him through it. I asked him if he understood. "No....um, yes.....no," he replied. A few minutes later, he said, "If you are not good, you do not get to do Starfall." That's as close as he gets to showing us that he understands something new we've introduced.

I'm ready for the chart to work and for Martin's wrestling maneuvers performed on his 20-pound sister to stop. If it doesn't, I'm considering a call to Jesse Ventura since the former governor no longer has a job and probably needs somebody to subdue.

mrs. bennet

Do you ever have days when you are Mrs. Bennet? All laughs and cheer when agreeable people and easy situations are at hand and then ridiculously dour when things don't go your way? If I was Mrs. Bennet today then Martin was my Wickham. On the day Wickham ran off with Lydia. Like Mrs. Bennet of Wickham, I have been tempted to call Martin a demon from hell sent to ruin us.

Not because Martin is bad. He's no demon; he's an innocent child. But I sometimes feel ruined by him because I simply cannot be a good parent to him all the time. I get so mad, so frustrated, so upset that I feel as crazy as Lizzie's dotty mother. On some days, I feel that his disability - among other things - is a mirror in which I see my worst self. I see the person who yells instead of being patient, the mother who despairs instead of staying hopeful for her kid's sake. If Mrs. Bennet was clueless about her terribleness, I feel constantly in touch with mine.

I know Mrs. Bennet got over her anger with Wickham. Indeed, she fawned over her new son-in-law once he and her daughter were no longer a complete scandal. I'm not there yet. Maybe I'll get there when I experience two days together when Martin doesn't scare the daylights out of me by running into the street. Or when he can brush his teeth more than once without throwing the rinse cup across the bathroom. Or when I can get just one day where I'm off the working-mom clock.

Maybe Mrs. Bennet was so loony because her behavior exempted her from all the expectations the rest of us suffer under? Maybe she was the smart one? I'm getting my smelling salts.

another try

Martin and I are going bowling in 2 hours. We're attending a classmate's birthday party. Martin has only bowled once before. His teachers report that he had a good time once he stopped throwing a fit about taking turns. When I told him about today's party, his immediate response was, "You have to wait for the arrow to take your turn." He didn't say, "Wow, that sounds fun."

Martin had the same trouble this past summer when we signed him up for T-ball. I thought I was being really smart in choosing T-ball over soccer. Little kid soccer is total chaos. I figured that Martin would be stressed out by the lack of pattern and order. Instead, we tried T-ball, a sport with discreet tasks. Pick up bat. Swing it at ball. Run to first base. Wait and run some more.

I forgot about all the variables. For instance, the coach altered the batting order every inning. There are also foul balls that mean you should not run. When on base, you have to wait for the next batter to hit a fair ball, something Martin found hard to judge. Just when are you supposed to run?

T-ball is also boring. Boring like bad calculus lectures or waiting in the dentist office. I accompanied Martin to his post in the outfield. We waited as all the children on the other team batted. Perhaps one ball would make it to the outfield grass. Even then, Martin wasn't sure what to do with it. He was bored. I was bored. And I knew when the inning ended we would only return to the bench to find a changed-up batting order. It was pretty disastrous. And totally public.

Bowling today will be lower stakes. All the other kids at the party are on the spectrum. The bowling alley is tiny with just a few lanes. There will only be a few kids to take turns with and the order will stay the same. And bowling is more fun than T-ball. But that doesn't mean it will be a picnic. Wish us luck taking turns. If the luck doesn't come, I've got candy reserves to ensure immediate happiness.

mister caterpillar

It's been all good or all bad today. Let me start with the bad: refusal to get in the car to go to school this morning, refusal to take a bath, and refusal to go to bed. Indeed, I still hear his little footsteps on the floorboards above me.

There has also been good. A good day at school. A good day working with the behavioral therapist. A nice time drinking hot cocoa after shoveling snow. A hilarious pretend scenario in which he was Mr. Caterpillar and I was Mr. Grasshopper.

I keep realizing that we will never get rid of the bad - or should I say difficult - moments. I just have to learn to keep my cool during them. It's so easy to let the frustrations build up. To feel like I'll never be released from this terrible cycle. It makes the Buddha seem so darn sensible. And yet, the cycle always turns. There are always better moments. And there are sometimes wonderful moments. Like being Mr. Grasshopper and asking Mr. Caterpillar if he is warm enough in his cocoon. "Oh yes," Mr. Caterpillar replied. "Grasshoppers should have cocoons, too."

across the universe

I could tell you about Martin's parent-teacher conference. During that meeting, we heard about Martin's progress at school, how he likes to role play stories, and the way he's making friends.

Or I could tell you about my successful effort to get Martin's teeth brushed with no fighting by distracting him with a long soliloquy on pajamas with pigs on them.

But because my eye hurts, I'll tell you about that. A few minutes ago, I was on my way to an event-less bedtime transition. Martin only needed to remove his sweater and crawl into the laundry basket that has served as his bed the past several weeks. Martin did remove his sweater. He then swung it behind his back and brought it forward straight into my face. The bulk of it hit me in the right eye and (because I am small and fairly wimpy) sent me onto the floor.

Needless to say, the good parent-teacher conference and the happy teeth-brushing memories vanished. I was furious. I was livid. I was seething at a five-year-old that hardly understands English. What are you supposed to do in that situation?

I sometimes want a conference with the universe. If Martin's teacher can call me in and report on his progress, then I want to hold the universe to account for the kid it delivered to me on May 14, 2004. Not that I want to give him back. But I just want someone other than me to have to care and to take responsibility.

Or maybe I wish Martin could take a swing at the universe instead of at me.

hair

To begin with, Martin has difficult hair. It's thick and unruly. Unless it's cut very short, it easily sticks up in odd ways.

It is also difficult to cut Martin's hair. He has endured the barber only once in his life. Home hair cuts involve cajoling with treats and lots of flailing and shouting.

I am also hair-styling-challenged. It is difficult for me. I'm trained to read nineteenth-century documents, not to cut hair.

Martin's hair has grown so out of control, I looked at him this morning and thought, "He looks like a poster child for an agency that helps impoverished, homeless children with bad hair." And then I sent him to school looking like that because every effort to fix it ends in tears, both his and mine.

snow day

Martin had more fun today than I can ever remember. We had at least a foot of snow. He spent much of the day shoveling paths and then walking around them.

He was really happy.

So I was really happy, too.

follow the leader

One of the ways Martin's teachers get him to follow the classroom routine is to put a carrot in front of him. Not a real carrot. But the I'm-trying-to-persuade-you-to-do-something kind of carrot. Usually, the carrot is lineleader privilege. If Martin follows the routine, he can lead a line of kids to gym or the cafeteria or wherever. Martin's teachers find this method incredibly effective.

I'm trying to figure out how to use this idea at home. For instance, when Martin ignores my calls to come to the dinner table, I can tell him that he must come quickly or he can't be songleader. (That role involves picking the song we sing for prayer. I'm willing to let him choose Johnny Appleseed - which I hate - every night if that means he'll listen and cooperate.) I'm trying to figure out how he could be laundry leader, which might involve leading a parade of clothes baskets down the steps to the basement. We could also have car leader, a person who chooses the music in the car and maybe even the roads we take to our destination.

Martin's willingness to compromise so that he can be the leader reminds me that the poor kid is just trying to feel in control of at least one thing in his life. Like typically developing kids, Martin wants to be in charge of his environment and activities. Because of his autism, though, he actually struggles when presented with a full spectrum of choices. So he needs to feel control within a world that's been set up to help him flourish. A world with established routines and predictable people. But that world can't be so predictable and established by adults that he feels no sense of freedom.

I'm taking ideas for other leader opportunities that might incite good behavior. Maybe I'll issue prizes for those who offer great suggestions? Or maybe I'll just try what you say and send out my thanks whenever you've helped me find a strategy that works.

teeth

I'm going to admit something that might appall you. When I think of it, I appall myself. Here's goes. Despite the fact that Martin is five-and-a-half years old, he has been to the dentist only once. His time with the man in a white lab coat lasted all of five minutes.

Books about childrearing advise annual trips to the dentist starting between the ages of two and three. We got Martin's diagnosis soon after he turned three. We were scheduling neurological exams and speech assessment, the dentist wasn't really on our minds.

I finally took Martin to a pediatric dentist about a year later. I had heard that this dentist was good with special needs kids. Martin and I drove about an hour and found a pleasant office full of toys, book, and even video games to play. The staff was nice. The dentist was very approachable. But Martin was still completely freaked. When his name was called, I had to sit in the dentist chair and hold Martin down on top of me. The dentist asked Martin to open his mouth. He simply looked inside and moved a toothbrush around for a bit. Then he recommended we come back in three months. We haven't returned.

On the drive home - a time punctuated with Martin's sad recitation of the events at the dentist's office - I thought about how this dentist got a reputation for being good with special needs kids. It wasn't that he had a particularly effective manner that allowed him to do what other dentists could not. Rather, he didn't freak out. He stayed calm and composed - he even invited us back - where other dentists might have said that it was time for us to leave.

I have a friend who flosses her sons' (ages 4 and 6) teeth every night. I am in awe of her. I will feel lucky if Martin doesn't have a mouth full of cavities, despite our twice daily efforts to clean his teeth. Maybe I'm appalled not because my kid has never had a real dentist visit, but that to do so would require such Herculean effort?

a register of irrationalities

Here's what Martin wore on his upper body today, in order from inner to outer: a Duke soccer t-shirt, a poison dart frog t-shirt, a dog sweater, a red and black striped sweater, a New York fire department t-shirt, a Croatian soccer jersey, and a red cable-knit sweater. He looked like a sumo wrestler prepping for a trip to Siberia.

Here's how Martin spent several stretches of his evening: lining up animals, pushing them into a barn, and singing, "And we're going to the promised land." At other times, he lined up animals, pushed them under blankets, and sang "The Twelve Days of Christmas."

He got mad at my husband and me several times. We didn't let him watch more than one movie. We didn't give him chocolate ice cream. We offered to read him books. We tried to help him play out his little animal scenarios. All to maddening effect. Apparently, we do nothing but drive our children crazy.

And after all this bizarrro behavior and contrariness, Martin sat down and ate his supper. Two helpings of pasta and a plate full of peas. I simply cannot make sense of it.

some days

I get enthused about ice skating success because the rest of life can get me down. Ever since Martin started his new school, he's been difficult at home. This is natural and to be expected. Martin is learning a whole new environment at school. He has a new set of expectations to navigate. It is no wonder that he gets home and crashes. And crashing has meant defiant behavior. Being physically rough. Getting loud. Refusing to do even the smallest thing we've done a thousand times. Like getting dressed.

Even though this behavior is normal and to be expected, I am not enjoying this period. In fact, I'm fed up with it. I'm tired of struggling every morning to get this child dressed. I'm sick to death of Martin plowing over his sister for no apparent reason. I just want him to behave decently. For more than one evening. For a few days at a time. Is it too much to ask?

In fact, it is too much to ask. This is why I feel a little down these days. No matter what we do, no matter what approach we take, we must deal with the fallout of Martin trying something new. Of course, he has all sorts of stress, too. I haven't forgotten that. But we are dealing with the seemingly irrational actions that have their basis in a child's experience of the world being a hard place to understand. I guess I'm having a hard time understanding, too.

I'm posting a picture of Martin and his sister at the Toledo Zoo. From this image, you'd think the only thing wrong in this kid's world was the bad haircuts he endures at the hands of his mother. The image obscures all the difficulty and sadness. It leaves out all the patience and heartache that this experience mandates. Moments like the ice rink and the Toledo Zoo get me through. But some days it seems that they are not enough.