Rainmom

christmas colors

2010-09-20T21:07:00.003-04:00

There's a popular system for regulating elementary school behavior. Good behaviors merit a designation of green. With lots of green days, a kid can earn a prize. A few bad incidents might merit a yellow or a blue. The yellow means you had an outburst, but managed to pull it together. Blue means you couldn't pull it together right away, but could eventually. Like soccer, red means you exhibited really bad, and basically unrepentant behavior. At school, Martin always gets either green or red. There is no middle ground.

It's the same at home. The past two weeks have been either heaven or hell. At times, Martin has been inquisitive, warm, and hilarious. He's learned all the first ladies. He's learning the vice presidents. He plays in a tent we set up in the backyard. Today, he invited a friend to go to the playground with him and, without prompting, thanked the friend when we dropped him off afterward. There are moments when you look at him and forget that he has an autism diagnosis. There seems to be nothing in between him and the rest of the world.

But then it comes back. Usually we have no idea why. But something will set Martin off. And then there is scratching and hitting, yelling and kicking. He's so frustrated about something, but he can't say exactly what. And even when he can express his desire, he can't handle it if the request is denied. For instance, he demands that I carry him. I simply cannot do it anymore. He's just too big. When I tell him I can't, you'd think I just denied him candy for the rest of his life, or oxygen. The response is so instant and so dramatic. And I can't do anything. I certainly can't give him what he wants. And I can't seem to find a way to convince him that life might be OK if I don't carry him.

So even though it's only September, life is red and green for us.

try, try again

2010-09-13T20:31:00.004-04:00

So it continues. We were having the most wonderful Sunday. Martin made it through his first visit to a new Sunday School class for children ages 6 and 7. We went out for breakfast afterward. Martin ate lots of pancakes and was polite to the waitress who served us. In the afternoon, we took a long hike in a local park. Martin climbed fallen trees, found old bird feathers, and gathered some acorns. It was all so lovely.

Then we went to our Sunday evening dinner group. And I must admit some of my own mistakes here. I was watching Martin's sister and also trying to eat, so I didn't always have my eyes on Martin. I noticed a few times that he was flustered about sharing some balls that he and other kids were kicking around the yard. I saw that the play was fairly rough and tumble. Martin took a whack in the face from another child. Then he delivered one in return. I took him aside for a time out, mostly hoping that he could cool down. Things didn't go as planned.

Martin refused to sit down. He kept jumping up at me and flailing his arms. Hoping to get him away from other people, I took him to a small side room. There, things got worse. He started to kick me. I couldn't get him to sit in a chair for even a moment. He even spit at me, which was a new low. He was utterly out of control. Since my husband was at a meeting, I had to ask another man at the group to hold Martin for me. I couldn't manage him myself.

Being held by someone other than a parent made Martin even more mad, or afraid, or something. I left the room, trying to figure out what to do. Within minutes, I decided that we should just go home immediately. I went back to the side room to get Martin and asked if he was ready to walk to the car. He said that he was, but he was still crying. He told me that he didn't want to be held, that he just wanted to go home. We did go home. I cleaned up his face. We ate some cereal together. And then he laid beside me in bed. Soon he started to hide under the covers, pretending to be in a chrysalis. He emerged as a butterfly, flapping his arms with a big smile on his face. For him, it was as if the events of the hour before hadn't happened. I, however, can't seem to forget that my kid spit on me.

I used to think that we were working toward something called "better." But I'm beginning to think that such a notion is only a set-up for a letdown. Every success Martin has leads to more integration with the "normal" world. And most of his new encounters with "normal" have not gone well. I know we have to keep challenging Martin to try new things, otherwise he'll never progress. But this process sometimes makes me think that we're destined for intermittent and never-ending experiences of disaster. Every new encounter is a potential trauma for him, and therefore, for us.

Some days I feel strong enough for it. Yesterday and today, I don't.

jekyll and hyde

2010-09-11T20:37:00.003-04:00

Martin is really wonderful. Before falling asleep, he tells me that he plans to dream about boats. He pretends to enter a chrysalis and emerges as a butterfly. He reads books about the first ladies to his little sister. He tried a piece of lettuce last week.

But then he is awful. Instantly awful. As far as I can tell, he becomes awful the moment I say the word "no." I've been hit, kicked, and screamed at. His teacher has also had to deal with hitting and kicking. He just turns on a dime and your left there, suddenly, being accosted by a 6-year-old.

During the summer, we took a break from the behavior counselor that Martin was seeing. And when we returned home, we thought we might focus our concerns on Martin's eating issues by spending some time with a therapist who helps kids become more open to food. But I think we'll be heading back to behavior counselor. It's good that we can do that, but it's one more appointment to add to our week. It's one more thing to ask Martin to do instead of chilling at home reading president books and eating graham crackers.

Despite the fact that this new appointment will stress out our schedules and keep Martin more busy than we'd like, we simply have to do it. He's clearly struggling - and failing - to keep it together when he feels challenged. So we start next week and hope for more Jekyll than Hyde.

green day

2010-09-04T08:18:00.003-04:00

Things were bad. Martin spent several days in a total funk. He was excited to go to school, but acted out once he got there. He came several days in a row, reporting to us that he had a "red day." Martin's teacher uses color codes for discipline. Red is the worst. It means a student must write an apology note.

After several red days and after Martin's terrible behavior at home, something changed. He slept about 12 hours one night. And his teacher - genius that she is - tried a new system of rewards with him. Ever since, he's come home reporting of his "green days," the very best you can have. He's been much nicer to us. Things are getting better.

In other news, I think I've happened upon an awesome career for Martin: Japanese steak house (JSH) chef. On a recent visit to a JSH, I noticed that the chefs do the same thing and tell the same jokes over and over. It's a funny little routine, requires a certain skill set, and can be done successfully over and over again in exactly the same way. Perfect for autistics. Now, I'm not sure about the whole dealing with customers part of the job. But I thought about Martin having a life where he can do something relatively fun, amuse himself, and repeat ad naseum. Maybe?

ug

2010-08-31T20:22:00.003-04:00

I'm sad to report that I basically got beat up by Martin this evening. He was completely strung out after another day of throwing fits at school. He simply lost it when it was time to put on pajamas and go to bed. My arms are all red from where he hit me.

I have no idea how to help Martin when he gets to this point. I try my best to make a world for him in which he never has to feel such desperation. But I'm not in control of everything, or really, anything.

wish

2010-08-29T02:30:00.004-04:00

Martin has a hard time recognizing that other people have birthdays. Whenever we tell him about a celebration for someone else's big day, he insists that it is actually is birthday. In fact, when we told him that Christmas was a celebration of Jesus' birthday, Martin said that it wasn't Jesus' birthday at all. Instead, it was his.

Yesterday was my birthday. I wanted, somehow, to help Martin in his process of recognizing other people and cooperating with them. I thought I'd try a project that Martin would ostensibly enjoy: making chocolate cake. My husband gave me the idea of radically simplifying the operation and making a list of what Martin should do. I measured everything into little bowls. Then I made a list that went something like this: Butter, oil, sugar, MIX. Eggs, vanilla, MIX, and so on.

When I first invited Martin to make the cake with me, he insisted that he wanted to make a cake similar to one he makes on a computer game. I told him that our cake had many of the same ingredients and Martin seemed willing to try. He helped with every item on the list, including the sprinkling of chocolate chips on top at the end. He also licked the batter off the spatula, which is a perfectly normal thing that Martin usually refuses to try. When the timer went off, Martin jumped up and down at the prospect of eating the finished cake.

We didn't make it through the whole day without Martin's insistence that it was actually his birthday. But we did move forward in our effort to help Martin learn to accommodate other people's wants and needs. I didn't have to make a wish when I blew out the candle on my cake. The cake was a sign that I'd already gotten it.

partners

2010-08-25T20:42:00.005-04:00

Martin and his sister have a volatile relationship. Full of love, full of frustration, and sometimes full of physical conflict. If he is Bert (the paperclip-collecting puppet on Sesame Street), then she is Ernie (the puppet who makes goofy jokes and giggles). If they were the A-Team, she would be crazy Murdoch and he would be taciturn - and potentially explosive - B.A. Baracus.

I've read that an autism diagnosis sometimes means that families stop having biological children. They worry about having another kid on the spectrum. They wonder if it's fair to the developmentally disabled kid they already have to bring another screaming, needy infant into the world. And they consider what it might be like for typical kids to grow up with siblings on the spectrum. For some people, it's enough to stop further babymaking.

I found out I was pregnant with a second child just a week or two after Martin's diagnosis. Our entire experience with autism has run concurrent with expecting and then having another kid. For us, this has been an overwhelmingly positive experience. True, it's totally nuts at times. And sometimes Martin struggles to assert his way in a family that consists of not just his parents, but also another kid. Most of the time, however, it's been great for Martin to have a sibling. They talk to each other. They play together - sometimes. Martin's sister provides him with endless opportunities to practice the social skills that are so difficult for him.

There's one aspect of their relationship that I didn't expect. Sasha's little-sister love of her brother makes her want to be just like him, autism and all. She is also obsessed with the presidents. She, too, will listen to us read a book about the First Ladies. This emulation won't last forever, but for right now, I think it's nice that Martin has someone around who thinks so highly of him.

She teases him as mercilessly as Ernie teases Bert. And she drives Martin even crazier than Murdoch does B.A. But like both of those sets of characters, Martin and Sasha make a nice little team.

PS - School is going well and Martin now knows the names of all the First Ladies.

first day

2010-08-22T21:08:00.004-04:00

Monday is the first day of school. At 8:40, Martin will climb onto bus #13, new backpack and new lunchbox in hand. He'll ride a few blocks to school and greet his classmates and teachers, the same ones from last year. He'll be in the same class with the same routine. We're hopeful for a smooth transition.

School is starting not a day too soon. Because we've been out of town so much of the summer, we had few structures in place for the last three weeks before school started. We've found a few babysitters here and there. We've taken a few trips to the zoo and the pool. But most of the time, we've been trying (and failing) to keep Martin occupied. Our summer experiences, both at home and in Virginia, have left me with a few resolutions for next summer.

1) If our schedules allow it, we will leave town for a significant chuck of the summer. Going to Virginia was hugely positive for Martin. The change of pace, along with relaxed atmosphere, was just right for him.

2) Whenever we're at home, we'll have some structures in place to keep Martin occupied. Whether it's sports camp at the Y or a babysitter willing to take him rollerskating, we won't try to do it all ourselves.

3) More popsicles.

4) We'll ask f0r more help. I think I could have bugged people more. I could have called them up and said that I was dropping Martin off for a few hours (along with a box of ice cream sandwiches, if that would help it go down easier). I have to remember that every time I have asked for help, I have gotten it. I just have to be willing to do it.

In summary, I think what Martin and I need each summer is a country property with a popsicle dispenser and a few tents for our friends. Until that happens, we'll get on bus #13 every morning and hope for the best.

yo, teach

2010-08-08T15:18:00.006-04:00

It's all about teachers. Martin had a successful week at pee-wee sports camp because the teacher wasn't concerned if Martin's attention sometimes wandered. He didn't feel threatened if Martin didn't participate in every game. The teacher simply wanted Martin to be safe and have fun. He found ways to invite Martin into the games. He got my kid to do between 65-75% of the activities. For a family that is often left wondering if Martin will get kicked out of activities, this was a big success.

For a long time, I thought that being able to deal with autism was a personality thing. It seemed to me that some people can go with the flow and others cannot. Some folks can tolerate difference and chaos while those things trouble others. Unfortunately, I understand myself to be in the latter category. In my daily battle with frustration and impatience, I wondered if poor old Martin had gotten himself the wrong mom.

Over time, I have come to see that there are some people who - just by disposition - can deal with the uncertainties of behavior and interaction that being with an autistic person can present. Martin's sports camp teacher seems like one of those people. But I think the rest of us can become more like those people. We just have to have a reason to try and chance to practice. Of course, I have both. I have a kid who I love and who isn't moving out any time soon. I think others have to be persuaded.

A case in point is Martin's most recent Bible school teacher. Our last week in Virginia, Martin attended a second Bible school. Unlike his prior experience, this one didn't go so well. Of course, Martin hadn't changed, but the expectations were different. The teacher wanted Martin to do what everyone else did all the time. It stressed her out when he didn't. Instead of saying, "It's Bible school not astrophysics class," the teacher got into conflicts with Martin. She created power struggles over such pressing matters as storytime.

Martin only lasted half a week at this Bible school. And I have to admit that I was pretty aggravated about how things turned out. But I hadn't taken the time to give this teacher a reason for cutting Martin some slack. I hadn't done enough to let her know it was OK if Martin didn't come home with a successful pet rock craft or a Bible verse memorized. And because I didn't let her know that is was good enough simply to have Martin along for the ride, she had no reason to adjust her expectations and try to accommodate him. Next time.

The reason for accommodation can never be that we need autistic people to be just like the rest of us. We can never fool ourselves that they will (or want) to be like us rather than be themselves. Rather, the reason must be that the world is big enough for all of us, that to leave out the autistic kid is get to the end of the Bible school week and be missing something.

back home again

2010-08-01T15:25:00.002-04:00

It's been a big transition. The country life exchanged for small town living. Endless lawn to play in given up for a postage stamp of grass with a cute sandbox. We've left the novel and returned to the familiar. But it's all good. Martin has made the transition quite well. It's been a bit bumpy when we couldn't manage to provide the stricture he needs, but it's gone better than many of our past summer adventures. Through it all, he's still Martin, full of brilliance and goofiness that makes our days both fun and exasperating.

For instance:

Martin sat through his first real haircut from a professional stylist. He no longer looks like a child to whom Sally Struthers asks you send money.

When greeted with open arms by his little friend, Laura, instead of welcoming the embrace Martin did something akin to setting a pick in a basketball defense.

Martin found a Youtube song about the presidents, a ditty with a PG rating. I realized this had happened when I heard Martin singing: "James Monroe told Europe they could suck it and Richard Nixon was a dirty filthy liar." Time for more parental controls during computer time.

Martin helped me plant some basil and insists on watering it every day. He's never taken interest in our garden before. I think that's because he never got it. He couldn't comprehend that you put something in the ground and it grows and you eat it. Now he does. He can hardly wait to visit the plant each day.

This last story shows me how much Martin can be interested in the world once he understands something. I often interpret his response to new things to be disinterest. But more likely, Martin is simply baffled by the new thing and lacks the words to communicate that he is baffled. There are so many things that Martin took a long time to do because he simply couldn't understand what people were talking about when they told him to zip his jacket, use a pair of scissors, ride a bike, or swing across monkey bars. And there's been no single way to teach these things to him. Every difficult thing requires consideration of how to present it so that he might understand.

Now we're talking about what to do during the few weeks before school starts. Tomorrow, sports camp at the YMCA. We'll see how that goes.

i hate wii

2010-07-21T21:25:00.005-04:00

Games are hard for autistics. Yes, these kids often do well in circumstances with clear patterns and expectations. And it's true that a game, once learned and loved, can become an obsession. The problem, however, is learning the game and dealing with all the human details that go with it.

In Chutes and Ladders, for instance, you have to take time to distribute game pieces and find the dice. With Uno, you must shuffle the deck and deal out the cards. These necessary parts of any game are bewildering and excruciating for autistic kids, or at least for Martin. My son perceives these activities as needless hurdles between himself and the pleasure of the game.

And so it is with Wii. Martin's cousin has a Wii. Martin loves to play Wii golf and bowling. He is dreadful at both, but enjoys the swinging of the arms and the sight of balls flying or rolling on the screen. What he doesn't understand and cannot tolerate are the moments when you must scroll through screens to note which player is playing, when you must reset the game, or see the score. He doesn't want any of those things. He simply wants himself and his playmate to swing their arms endlessly and watch the balls forever.

Today, in a fit of frustration at the more mundane moments of Wii, Martin went crazy. He hit his cousin who is bigger than him. Then he hit his cousin who is smaller than him. After being sent home, he still seemed mad and confused. So no more Wii.

As far as I know, the only game Martin can play is an adapted board game about presidential trivia. When we get through our first game of Candyland, I'll let you know.

white house briefing

2010-07-17T19:42:00.003-04:00

Martin was the star. As we entered the various White House rooms, Martin called out the names of presidential portraits. Benjamin Harrison. John Tyler. We started to get looks of bemusement from adults and slack-jawed confusion from youngsters. People began to edge closer to Martin as he moved from one room to the next, pointing out obscure nineteenth-century leaders. At the end of the tour, one fellow tourist asked Martin for a high five and declared, "I'm so glad I visited the White House with you." Martin said "OK," but his excited smile made it clear that he was very happy.

Our day in downtown Washington DC began and ended on high notes. Our White House tour was scheduled for 7:30am. After finishing and finding some breakfast, we had time to kill before our next museum of choice opened. We headed for the air and space museum, which we thought would have exhibits on planets that Martin might enjoy. Unfortunately, it was busy, both with visitors and visually. It was a little too much for Martin. He got very overstimulated trying to find airplane models he could crawl inside. We left in a hurry, trying to pull him together on the sweltering city sidewalks.

After more cool drinks and some time to calm down, we entered the National Portrait Gallery. Martin marched up to the desk staff and asked for the president pictures. With their direction, he made a bee-line to the second floor. Turning a corner, he spied a huge painting of George Washington. He began to sprint and started to sing. He made his way through the entire gallery 13 times. As far as we could tell, he made each trip with a slight variation. He visited each portrait while singing various president songs and raps. He said only their last names and then their first and last names together. He insisted on going through in the stroller. Sometimes he jumped up and down with excitement. He has asked to go back to the portrait gallery more than a dozen times since we left yesterday morning.

It was a great day. We were so glad because we knew there was potential for sadness. It was unclear whether Martin really understood that a White House tour did not involve a personal interview with Obama or a chance to stand on the Truman Balcony. But Martin was OK. In fact, he loved it. We bought him a new pack of president cards - with pictures featured in the portrait gallery - and Martin has had them in his hands ever since. And some of the people we met on the tour will go home with a nice story about cute little boy and his presidential knowledge. On our trip, autism helped Martin make new friends.

why is summer hard?

2010-07-14T15:16:00.003-04:00

Parents of autistic kids are always trying to strike a balance between the routine and the new, between comfort and the unknown. During these long summer days, I'm constantly moving between letting Martin do the things he likes and trying to offer him at least a little structure. I ask myself questions such as, "Should I ask Martin to work on this handwriting workbook or let him play with figurines for another half hour?" or "What can a reward for good behavior possibly be on a day when a kid has already played in the sprinkler and eaten 2 popsicles?"

Martin is doing pretty well, almost too well. He really likes the lack of structure. In fact, he resists the moment we impose even a bit of order on his day. That's the autism paradox: a love of order alongside a refusal to try to new forms of order. Once you struggle to get an order into place, you're tempted to keep it for the next 15 years.

So who knows what will happen on Friday. We'll try to tell Martin about visiting the White House, including what we can see and what we cannot see. We'll ensure him that a White House tour and visit to the National Zoo will be more fun than he can possibly imagine. We'll try to convince him that new is good. But I'm not a great salesperson. I too eagerly acknowledge complicating factors (hello, I'm a decent historian). I'm far too willing to admit - and be flustered - when a problem arises.

So we're in a summer mystery zone. A place between order and chaos. A time between old and new. Martin seems to like it. The question is whether or not it's good for him.

the final countdown

2010-07-11T12:45:00.006-04:00

Readers, readers, I've neglected you. Life has been too full of road trips and popsicles, pool visits and evenings on the porch. And in the spirit of full disclosure, I'm finishing up copy edits on a book manuscript. So life is busy. I could have blogged about so many things, including:

1) Martin's recent insistence that he is Jewish;

2) The worst meltdown of 2010 that occurred in the parking lot outside a public swimming pool - a fit followed by a day of bliss in the waters;

3) A visit to Martin's hometown - Durham, NC - where all the folks who showered love on him as a baby got to shower it on him once again;

4) Picking gooseberries;

5) Ongoing impersonations of the Swedish Chef;

6) Martin's budding relationship with a stuffed duck and stuffed quail at the local children's museum, a partnership that involves cooking the birds fake food and giving them fake medical checkups;

7) Continued bickering (which is conversation, I'll admit) with little sister;

8) More bike riding;

9) Dramatic increase in fear of dogs; and

10) Martin's summer in which more and more people meet him and have no idea that he has social and verbal difficulties.

I could tell you a lot about all of these things, but I'm saving my words for the end of next week. On Friday morning, our family is scheduled to visit the White House. 5 more days until Martin's dream comes true. Turn up your Europe CD; it's the final countdown.

a first

2010-06-21T20:59:00.005-04:00

Martin just returned from a successful evening at Bible school. If you're from the planet Mars or from California, you might be asking yourself, "What in the world is Bible school?" To answer, I must reference the (outrageously problematic) red America-blue America dichotomy and say this: Bible school is second-tier summer entertainment for country kids, coming in a close second to the county fair and far ahead of picking the giant patch of green beans your mom insists on planting.

More specifically, Bible school is a combination of Protestant catechism, bad crafts, and community mixer. I attended numerous Bible schools every summer: with my Baptist neighbors (who had a flag in their church), with my Conservative Mennonite neighbors (I had to wear a dress), and whoever else from the neighborhood invited us. It gives kids something relatively structured to do after a long day of playing in the sprinkler and shucking corn.

I had my doubts about sending Martin to Bible school, at least sending him unaccompanied. We have never been able to send him to a structured event and trust that he can handle it on his own. We've accompanied him to school, to birthday parties, to library reading groups. Last summer, I volunteered to be the teacher for his age-group's Bible school class. I couldn't imagine instructing another person on how to handle Martin.

This evening, I held my breath and dropped Martin off at Keezletown United Methodist Church. I provided my cell number in case anything went wrong. No one called. Two hours later, Martin was dancing and singing with a bunch of new friends when my sister-in-law went to pick him up. A first.

Bible school provided many firsts in my life. I lost my first tooth at Bible school and brought it home in the purse that had previously carried my offering money. At Bible school, I first learned about something called "the problem of world hunger." For a long time, I thought that Martin might not have the chance to go to things like Bible school, that he'd miss out on the bad crafts and goofy songs and play with other kids. But he had his own first tonight: he went out into the world and managed - had fun even - all by himself.

week 2

2010-06-18T15:35:00.003-04:00

At the end of week one, Martin expressed a desire to go home. He was tired of Virginia, he said. He wanted to be back "at our home." These feelings, however, have faded and Martin seems to be enjoying himself as much as ever. One of his nicest moments included a visit with another child with a similar propensity for presidents.

Our friend, let's call him Louis, is 8-years-old. We've known him since he was a baby. He's always had a few funny qualities. As a small child, he was obsessed with water heaters. If he visited your home, he might ask what kind of water heater you have and if he could see it. He's never had an official diagnosis, but some of his behaviors certainly overlap with the autism spectrum.

Like Martin, Louis has a spectacular memory for heads of state. Like Martin, Louis knows all the presidents and what number they are in terms of service. From Louis, Martin learned that you can do presidential arithmetic. You can ask either one of them what Martin Van Buren plus Andrew Jackson equals. They will look at you with the air of someone who wonders why this is even a question. Then they will immediately answer: James Buchanan.

Last night, we visited Louis. He and Martin put together a president puzzle. Then they looked at a Time Life book about the presidents. Then Louis got out his historic presidential campaign buttons for Martin to see. Louis seemed happy to be around another kid who shared his passion. "All the kids in my class wonder who George Washington is," he explained with exasperation.

So Martin has found a friend here. And so I think he is happy to stay in Virginia a little while longer.

summer

2010-06-13T11:42:00.004-04:00

For as long as humans have written, people have needed a bit of time before they could write about their travels. Paul took the time to collect his thoughts and construct theological arguments against his foes before he wrote his epistles. Indeed, some writers needed to make up other people's travels instead of writing about their own. Homer is the biggest culprit. And even Jack Kerouac added fictional spice to his tale of being on the road.

In that spirit, I needed some time before reflecting on our family's big trip. Last Friday, we packed up our things and headed for West Virginia. After staying the night with friends, we drove to Virginia, where we will be staying for 6 weeks. It's a big deal to decamp with your two small children for such a long period. But we figured that the benefits outweighed the downsides. Here's an accounting of things so far.

What's good:

Martin can run around outside, jump on trampolines, throw sticks in campfires, and blow bubbles to his heart's delight. He can play with his cousins. He can visit the local children's museum and a brand new park. He has not even mentioned the end of school.

What's not so good:

On day 6, Martin told us he wanted to go back to Ohio. Comparing his experience with past vacations, he thought our time here was coming to an end. Also, summer days are really long. What can you do with a kid who's awake from 7am to 9pm every single day? That's a lot of time for a kid or their parent to find stuff to do. And finally, we're starting to see that kids Martin's age (kids we have known a long time) realize that Martin is different. And in their awkward and honest kid-like ways, they are trying to figure how he's different and why.

For instance, one boy seemed surprised to hear that Martin turned 6 about a week before he did. The boy looked at me and asked, "How can Martin be older if I am so much smarter than him?" Another example: a 6-year-old girl has recently been told that Martin doesn't always understand what she says because he has something called autism. Now, whenever Martin doesn't do what she tells him to do, she repeats over and over that Martin can't do something because "he's autism."

Because these words come from little kids, I can be patient. But it still hurts. I've read that kids start to notice their friends' differences between the ages of 6 and 8. It's also the time when autistic kids begin to realize that they are different. Martin has shown no signs of understanding himself as different. And honestly, I'm not quite ready for it. It's enough to watch other kids begin this process.

Our summer trip has been good so far. We're still getting acclimated to a new pace of life. We're still working on establishing a pattern to our days. And we're experiencing things we hadn't anticipated. I guess Paul was also surprised by the noisy ladies in Corinth. Like him, I need more time to formulate a response.

how it goes

2010-06-03T07:19:00.005-04:00

In our family's effort to be open to whatever the universe offers us (ie. our desire not to be completely uptight), autism gets in the way. It's hard to play things by ear when one family member highly values the routine and the familiar. Not that Martin never tries new things. It's just that his willingness to do so depends on a magic set of circumstances. He's got to be feeling good and secure. He's got to have at least some signs of familiarity around him. The new thing has to make sense to him and appeal to him.

We got a last-minute invitation to eat with some friends last night. They are lovely people and terrific cooks. We accepted the invite, even though we had to leave right after Martin finished school and a therapy appointment. We should have realized he needed some down time. Maybe we could have tried to push dinner back a bit so that Martin could slow down by watching some Muppets for half an hour. But instead, we tried it. And we paid for it.

I won't tell you the whole story. It wasn't even his worst meltdown. But he was fairly unhappy the entire time we were there. He kept asking either to go across the street to a friend's yard he has played in before (the familiar) or to go home (the secure). We left early, apologizing for our exit, and assured by our friends that it was OK.

And even though it was OK for them, it never feels OK for me. I'm always sad that I've put Martin in a bad situation and that I've messed up things for other people. And I'm also sad for myself. My friend had just made tea when Martin's behavior warranted the red card. I really wanted to have tea with my friend.

We're about to leave for a summer sojourn at Martin's grandparents. While their place does not have all the comforts of home, it does have a huge yard and a cousin next door to play with. Here's hoping that this experiment with the new - six weeks in the Shenandoah Valley - will go better than last night did. Maybe I'll get at least one cup of tea.

predictions

2010-05-27T21:35:00.004-04:00

We have a birthday tradition in our family. Everyone writes a prediction for the birthday guy or gal's next year. Usually these predictions are funny. For instance, I observed Sasha's ability to side-arm lots of food off her high chair tray and predicted that she would represent America in the 2024 Olympic Games on the discus squad. Sometimes, though, they are more serious. On Martin's 5th birthday, I predicted that he would learn to ride a bike that summer. I was wrong.

Sometimes I find it hard to watch other children pick up childhood games and sports so easily. I'm a little jealous when I see little leagues of soccer and softball players. Periodically, we try a sport to see if Martin is both interested and able. Nothing has really worked yet. Because Martin loves the local pool, we tried swimming lessons. We were kindly told that it wasn't working. We tried T-ball and the only thing Martin liked about it was the t-shirt. We've received a few flyers about this summer's possibilities. I can't say that I'm eager to try again. I'm not the type who anxiously awaits the opportunity to sit out in the hot son to watch a less-funny version of the Bad News Bears without the Bizet soundtrack. The thought of schlepping out to the field only to watch your child be sad and unable seems infinitely worse.

Last night, we visited a local park with a small, asphalt track. Two kids were riding bikes on the track. Martin was really interested. We asked him if he'd like to go tonight. He agreed. Once there, he put on a helmet and pedalled away from us. We were astounded. Last summer, Martin seemed very uncertain when we tried to help him learn to ride. We would talk him through the motions, using our hands to guide his legs. It never took. Tonight, he just did it. I don't know how.

Although he rode about as slow as one possibly can, Martin was visibly happy and proud. The swimming lesson and T-ball traumas seemed like ancient history. Martin just turned 6 a few weeks ago. I predicted that he would learn to ride a bike this summer. I was wrong again. It's not quite summer yet.

dish

2010-05-25T21:22:00.004-04:00

This morning Martin offered to help me wash the dishes. He was not motivated by disinterested benevolence. Rather, Martin knows that we have a new feature in a our sink: a hose with a nozzle that squirts water. Martin is intrigued. I let him join me at the sink.

It can be very difficult to teach Martin new things. For instance, Martin used to be in occupational therapy to learn tasks such as buttoning buttons and using scissors. He didn't have a physical problem. Instead, he simply did not understand instructions for completing these tasks. He could hear an adult say something like, "Put your index finger in here and your thumb here." But the instruction would not make sense to him, even if an adult helped him get his fingers in the scissors and proceeded to make them open and shut. Every new task demanded a strange curriculum of text (perhaps a flashcard with instructions), spoken word, visual cues (such as pictures on the flash card), and physical modelling.

This morning I tried to teach Martin how to rinse dishes after I washed them. I gave him four simple commands. 1) Wait for there to be three soapy dishes in the sink. 2) Turn on the water. 3) Grab the nozzle and aim. 4) Squeeze the trigger so the water comes out. We had some mishaps. Aim proved to be particularly difficult. There was some water in inappropriate places. Martin also struggled with waiting for three dishes, which was the only way I could get him to conserve at least a little water in the rinsing process. In the end, he was successful. He waited. He turned on the water. He loved using the nozzle. He rinsed all the dishes. The whole process made him feel so good.

Sometimes I sell Martin short. I've never invited him to help me wash dishes because I've assumed it would never work. Maybe it's me that isn't getting the world I live in?

what i expected

2010-05-23T06:58:00.003-04:00

Before I knew I had a kid who struggled mightily with auditory processing, I reveled in Martin's difference. I loved his oblivious attitude about civil holidays. I respected the way he ignored the strange parts of Christmas celebrations that involve making lists of things you want. I was proud of his refusal to care about clothes, toys, and propriety.

Then I realized that all of these ways that Martin resisted the world were the result of his failure to understand it and articulate a response. What I thought was his ability to ignore the world's lesser offerings was really a child who was mute in the face of an incomprehensible planet.

Last night, Martin demonstrated his understanding of the world. He talked about what day it was and what day followed. He talked about why the sky is blue. And he asked for a present. He received some little figurines - Littlest Pet Shop characters - for his birthday. He knew that some kids have little playhouses for these characters. He turned to me and asked: "Can I have a playhouse for my pets? I think we can can go to a store. And maybe I don't have any money, but we might get one."

This set of sentences reveals so much movement forward. He asks an unprompted question. He remembers something (a playhouse) that he saw in the past and connects it to the present. He shows that he now knows that some objects come from stores and require money. To be sure, this exchange shows my son to be a consumer, something I used to be worried about. But it means that he speaks English and knows where things come from. Not what I expected, but something I'm happy to live with.

road trip

2010-05-17T18:51:00.004-04:00

I took Martin and his sister out to their grandparents' farm in Indiana. Here's a breakdown of our adventure:

THE GOOD:

Not to get all Platonic, but Martin had some wonderful moments. He raced across the backyard in order to converse with cows in their pasture. He had yet another round of birthday presents and birthday cake. He tried new foods, including coffee cake and banana cake. Martin also tried rolls, which was surprising because he was certain he would only like bread that was flat and not round. While getting a kid to try a new cake flavor might not be a victory in most households, it is like taking a beachhead in ours.

THE BAD:

When out of his normal routine, Martin needs even more downtime than usual. He needs things that comfort him because vacations mean that things in his day are new and not routinized. The easiest way for us to provide downtime on the road is to let Martin have extra computer time. I often feel a bit bad about this. Just when Martin is with people who love him and who don't get to see him enough, he needs more time alone. I'm sure it seems anti-social, but it's what we have to do.

THE UGLY:

Or maybe this is hilarious? Martin's meltdown of the weekend came when I denied him the privilege of watching the Muppet Show episode starring Ethel Merman. He had already watched it earlier in the day. We don't let him repeat episodes in order to stave off obsession. That strategy works for us just about as well as it did for the Montagues and Capulets. Martin cried. Martin kicked his feet. He looked me with big, pathetic eyes and cried, "Please, please let me watch Ethel Merman." He cried out her name over and over. For a moment, I thought that I might be the only mother on the planet whose six-year-old son sheds tears over this late star of the Broadway stage. But then I remembered that David Sedaris must also have a mother.

Overall, it was a good trip.

It is so, so good to be home.

i...e...p

2010-05-12T21:13:00.003-04:00

Today we had a meeting with school district officials to draft an Individualized Education Plan (IEP) for Martin's next year. Martin got his first IEP in December 2007. That meeting involved reports that showed my kid at least one, if not two standard deviations below other children in verbal development and other developmental measures. One learning goal in the plan was that Martin would answer yes or no questions fifty percent of the time with a verbal prompt. That means that we were hoping for Martin to answer such a simple question, with some assistance, only half the time. I cried through most of that meeting.

Martin's new IEP includes goals of following game rules when playing with other children, increased proficiency with asking questions, and continued effort to help Martin process language without the aid of visual or verbal cues. It also projects his inclusion, for at least part of the day, in a typical first-grade classroom.

While Martin's new plan was exciting, the best part of the meeting was hearing from Martin's Occupational Therapist. Miss Sandy works with all the students in Martin's class. She was also Martin's OT when he was in a special needs preschool in 2007-2008. Until Martin started in the autism classroom this past January, Miss Sandy had not seen him since he left the preschool program in May 2008. During today's meeting, she talked about her shock at meeting Martin again. "When I had him last time, he could only say 'Hello, Miss Sandy.' Everything else was basically gibberish. He communicated what he wanted though gestures and gibberish. That's it. I can't believe how well he is talking."

The art teacher sat through Miss Sandy's account of Martin's history and looked totally shocked. She had been working with Martin only this past semester. She looked at us and said, "Of course I know that Martin is autistic, but I never would have guessed that he had such severe struggles with verbal development."

I used to wonder if my kid would ever, ever talk. I contemplated a life with him that included no conversations. Today's meeting is not the only proof that things have changed. Tonight, Martin looked over at his sister - who was finishing up an evening snack - and asked, "Sasha, how was your bowl of ice cream?" That's not gibberish.

report

2010-05-10T07:03:00.007-04:00

Birthday Party Wrap-Up:

10 bowling pins

9 bowling balls

8 balloons

7 presents

6 candles

5 friends

4 bowling pins knocked down (on average)

3 rounds of ice cream and cake

2 attempts to make a Kermit the Frog cake

1 new 6-year-old

Happy Birthday, Martin!

a party

2010-05-07T10:34:00.004-04:00

Martin's birthday is next week. Because we will be out of town then, we're having a birthday party on Saturday. Let me say a bit about Martin's past birthdays in order to make sense of the one we're about to celebrate.

When Martin turned three, he could not tell us his age. He did not know what a birthday was. We knew that he was a little behind in verbal development, but had no idea of the extent of his problems. If I think back on it, I had never even heard of autism on Martin's third birthday.

Martin was diagnosed about three months later.

On Martin's fourth birthday, as I have written about in an earlier blogpost, he read a book and he was wearing a diaper. He still didn't know what a birthday was. We had some strawberry pie and helped Martin blow out some candles. We didn't even try to have presents.

That fall, Martin went to preschool with the help of an aide. There, he learned about birthdays. His teacher had a delightful routine for birthday celebrations. It involved the child walking around a sun in the middle of a circle, representing every year that they had been alive. Martin got to do this ritual at the end of the school year. That same evening, we had four boys from the class over for cake and ice cream. Martin blew out candles and opened presents. He really knew what was going on and he loved it.

On Saturday, we'll have some classmates and neighbors over for cake and ice cream. Then we're going over to the college to bowl at the antiquated lanes. Martin has been looking forward to his birthday for several weeks. And because it has been such a long journey for him to understand this very basic, social celebration, I feel compelled to make a big deal out of it. I want to give him a big celebration since it took him so long (and required of him so much hard work) to understand this rite of passage. So I'm going to make a Kermit the Frog cake. And my husband is buying balloons.

I never would have thought I'd be a mom who throws a big party. I feel a little like the father in the prodigal son story. It's not that my son was off frittering away money or sleeping in a pig trough. But I do feel like my son has been lost, lost in his own world, lost in a confusing social universe, lost in his own language, and lost within his own family. Now that he's finding his way, I just want to celebrate.

best in show

2010-05-04T06:12:00.003-04:00

Of course there are multiple awesome moments in the movie "Best in Show." There is one in particular that gets replayed in our house. The owner of the champion poodle talks to the down-home, North Carolina-born owner of a bloodhound. The poodle owner wants to intimidate the poor fellow by reminding him of the champion status of her dog, famously named Rhapsody in White. "Do you know Rhapsody in White?" she asks. "Well," the cowed man replies, not wanting to admit it it, "I do and I don't."

I often feel that Martin lives in a similar world to the bloodhound owner. He usually knows what's going on. (This is a big difference from a year or two ago when his language was so delayed that he often didn't know.) He can read many social situations that come up day to day. It's not that he can't go along, it's that he won't. Autistic kids are often so fixated on their own vision of how the world is, they simply cannot bend. They know the world expects it to be another way, but they cannot make themselves adjust to it.

In some ways, I admire this quality in Martin. Maybe it will keep him from experimenting with drugs or stone-washed jeans. Maybe it give him confidence in going his own way instead of an inner dread about prospective unpopularity. But I'm trying to get him to do things like stay out of the street and keep playdough out of his ears. I'm not the Man.

But I don't get to choose what Martin wants. While I appreciate the strength of his desires, I probably can't channel them. He might come home wearing stone-washed jeans some day. I might ask him, "Do you know how ridiculous those are?" And he might answer, "I do and I don't."

just an ol' fashioned love song

2010-05-03T06:14:00.003-04:00

Martin is now obsessed with the Muppet Show episode featuring Paul Williams. Even if you are older than 30, you probably won't remember this guy immediately. He's got longish, dirty blond hair. A pudgy face that could hardly be considered cute. Tinted glasses. He wrote some nice songs, but he could never be a star today. He lacks the necessary screen perfection. Martin, however, thinks he is the best, particularly in this clip (starting at minute 3). http://www.youtube.com/watch?v=8YbIbByx6iA

Martin has wandered around the house for the past two days singing Williams' "Just an ol' fashioned love song." He gets all the music right. He imitates the different backup instruments. But he only gets the words of the first line of the chorus. After that, he sings nonsense words that sound like a garbled version of the real lyrics. Even though he's heard the song a dozen times, his brain has not been able to process most of the words. If I tell him what they are, he's unconvinced. When I say them or sing them, I don't sound just like Paul Williams, so I must be wrong. I'm not sure there's any way for Martin to learn the words of the song he loves short of Paul Williams and two Muppets coming over to teach him.

Martin is committed to a close imitation of the world he encounters. When he sings, he starts songs on the same pitch as the original singer, even if it's been weeks since he heard a CD. He's capable of mimicking very complex rhythms. But he can't process the spoken or sung word as quickly. He sings some garbled lyrics in most songs he loves. Only occasionally will he let us write down the lyrics for him. In written form, our lesson does not intrude on his aural experience. If I sing the words, it doesn't sound right. If I write them down, I have not upset his aural memory of the music.

That's not old-fashioned. It's new-fangled. I'm still getting used to it.

let's go

2010-04-30T05:34:00.004-04:00

Martin has started to argue with his little sister. I sometimes overhear them in another room having conversations like this one:

"This is my bed."
"No, it's my bed."
"Nope, it's my bed."
"Arg."

These exchanges have only occurred in the last few weeks, so they are not completely annoying yet. On the contrary, I'm thrilled by them because they reveal a new conversational capacity in Martin. In the exchange noted above, Martin initiated the conversation, something that can be very hard for autistics to do. He listened to his conversation partner's response. He responded to her response. And none of the exchange depended on flashcards, prompting, or encouragement.

It was a normal fight between siblings. Until our next long road trip, I'll revel in this step forward.

new song

2010-04-27T20:43:00.003-04:00

The four-year-old neighbor girl sang a song to her mother with the following lyrics:

There is only fun with Martin.

There is only truth with Martin.

Where is he now?

I had no idea that my child has the qualities of an anxiously-expected 1960s messianic figure.

I tell this story not only because I love the insane remarks of four-year-olds. (I am a complete sucker for those kids-say-the-darndest-things shows.) I tell it also because Martin is really making friends within his own age cohort.

Martin has had friends before. Usually, these friends are a little bit older and more mature or somewhat younger and much more immature. A similar pattern of friendship occurs in the lives of many autistic kids. Older kids are willing to show them patience and understanding. Younger kids have no clue that something is awry. Kids the same age are often impatient and suspicious. Comments from Martin's typically-developing classmates from the fall are good examples. "Martin doesn't know how to eat lunch right." Or. "Why does Martin shout when we're supposed to be quiet?" Kids in a similar age bracket are trying to figure ought what's right and wrong and how to do what they're expected to do. An autistic kid throws them off.

Martin's friendship with our four-year-old neighbor makes me think that we're past some of the rougher moments we once had within Martin's age cohort. Martin is communicating with them, usually in appropriate ways. And they are responding to him. It's exciting to see.

Martin definitely is fun. I'm skeptical about the claim that he is truth. Yesterday he told me that boogers taste good and I'm fairly certain that's not true. But he's here and he's having fun with the kids in the neighborhood. I'm so glad.

really?

2010-04-26T20:03:00.004-04:00

Is it of critical importance to determine whether Tuesday is an oatmeal morning or a cereal morning? Does it really matter if we watch a video on the human skeleton in particular instead of the human body more generally? Why is the Muppet Show episode starring Joel Grey so preferable to the one with Jim Nabors?

Martin lives in a world of preferences that I rarely understand. Most days, I have enough patience and energy to go with the tempo he establishes. Why should I care if we watch Joel instead of Jim? But it's the last week of classes. I'd rather pour out a bowl of cereal than cook a pot of oatmeal. I'd rather put in the human skeleton video I can find rather than look for the human body video that's been missing for a few days. Some days, I simply cannot be subject to whim.

So Martin's a little mad at me. The end of classes, however, means oatmeal days will be here again soon. Wasn't that FDR's theme song?

stickers

2010-04-24T19:49:00.003-04:00

Martin had several papers in his backpack when we picked him up from school yesterday. Among them was a certificate congratulating him on his selection as student of the month. I know that there are countless annoying bumper stickers about honor students and students-of-the-month. Whenever I see them, I shudder inwardly. I've always assumed those bumper stickers might as well say, "Honk if you like conformity" or "My greatest aspirations lie in my child's junior high school."

So I was totally shocked yesterday that my kid - my autistic kid, my special needs kid - was the student of the month. I was surprised to hear that his teacher nominated him because she feels he has made so much progress in the last few weeks. But most of all, I was taken aback that I wanted to tell everybody. I wanted one of those ridiculous bumper stickers.

Call me a hypocrite. Call me too quick to judge. I've learned the lesson that I have no idea what's happening in the lives of the families driving cars with those bumper stickers. Maybe they are caught up in their child's school life to an unhealthy extent. But maybe they have kids with difficulties and are simply too proud of their achievements to keep it to themselves.

Hurray, Martin!

fishing

2010-04-22T19:24:00.003-04:00

First, a quick apology. My goal has been to write this blog daily. Usually, I write at least 5 times a week. But it's the penultimate week of classes. Instead of blogging, I find myself reading articles about Zen meditation cushions and writing lectures on Catholic perspectives on reproduction. I hope to be back to regular posting soon.

Second, Martin is awesome and let me tell you how. For the past two years, we have rarely gone to restaurants. We could never depend on Martin making it through the experience of ordering food, waiting for food, eating the food, and then leaving happily with a full belly. When you come to think of it, restaurants are weird social spaces and it makes sense that autistic kids - who struggle to pick up the variations in daily life - would struggle to understand why one would go to a new place, talk to a stranger, and pay them to give you some food. Every once in awhile, we've tried to take Martin to a restaurant. It has usually ended badly, or least with my husband and I convinced that we won't try that again for another 6 months.

Tonight was different. We decided to go out for the wonderful vegetarian buffet at the local, run-down Chinese restaurant. We made Martin a card that listed the steps for our outing:

1. Order food

2. Play with toys while we wait

3. Eat food

4. Play with toys while family finishes eating

5. Clean up toys

6. Reward of cookies

Martin went through each step and put a sticker on the card when he finished them. When he seemed impatient, we reminded him of the steps and the eventual reward. He made it through. As we walked out the door, Martin chewed on his cookie and waved goodbye to the restaurant owner. He just needed a little extra guidance.

After dinner, we crossed the street to the local botanical gardens. Martin dashed off for the two little waterfalls to toss in rocks and call out to the fish. He told me he'd like to go fishing. I responded that it sounded like a good idea. "I can't right now," he said, "I need a fishing pole and a sailboat." Two years ago, a visit to the same gardens would have involved us asking Martin if he could see the fish and having a 50% chance that he could answer with just a "yes" or "no."

I am buried in a stack of papers it will take me weeks to get through. At least Martin is making progress.

leap

2010-04-19T20:29:00.004-04:00

It's always exciting to come home after a few days away. I just returned from a conference in Indianapolis and found that Martin leaped forward in conversational ability. It's not just that he could take turns in conversation, something we've worked on with diligence. Now, it seems, Martin has a new capacity to have natural conversation. He doesn't offer the standard, expected replies. Rather, he can say the things that reveal to us his own experiences.

An example. Martin is always the first member of the family to finish dinner. His standard routine is to chew his last bite, pick up his plate, and ask if he can be excused. Sometimes, he forgets to ask and we remind him by saying, "Martin, did you ask the question?" Martin picks up on our prompt and asks to be excused. Tonight was different. He picked up his plate and walked away. I said, "Martin, did you ask the question?" "No," he mumbled, "my mouth is full."

This exchange might seem so basic. Indeed, most 3-year-olds could have it. But we had to work so hard to help Martin learn to ask if he could be excused, to respond to us if we asked him about that question, and to try this exchange with us night after night. Martin's ability to go in new directions signals that his brain is trying to master communication that goes beyond the automatic. It's so exciting for us.

Later this evening, Martin ran into a friend from his old school. "Ben," he shouted, "I haven't seen you in a long time." A few months ago, we would have prompted Martin to say hello after Ben had greeted him. We would have answered Ben's questions when Martin proved unable. Tonight, Martin not only took part in a natural conversation, but instigated it.

I should go to Indianapolis every week.

cars

2010-04-14T06:52:00.003-04:00

Martin is convinced that he should be allowed to drive. He tells us he is 16-years-old. He demonstrates how he can reach the car pedals (while lying down on the driver's seat). He claims that someone taught him how to drive. Now, he insists on driving everywhere. Although we don't drive a lot in our family, we do usually once a day. Or at least every other. It's getting a little old.

This story could be cited as an example in Martin's recent progress report from school. Children with IEPS (individualized education plans) receive quarterly updates on the measurable goals listed in the plan. Martin's goals include very specific items such as identifying and correctly using prepositional phrases or answering "W" questions (not questions about George Bush, but questions beginning with who, what, where, and when). The plan also has broader social goals, including natural conversation with other children and ability to do circle time.

Martin's teacher wrote that Martin's social interaction and educational progress is impeded by his need to control situations. He can be so consumed by his desire to be the class's line leader that he can't act normally with the other children. Or he can be so obsessed with putting figurines in a particular order that he can't use them for a math lesson with the teacher. Hence, his desire to drive and his desire for me not to drive, and his efforts to keep his sister from touching her toes. He just wants to be in control. It makes him feel better.

I'm now thinking that Martin doesn't have this need because he's autistic, but because he's related to me.

long time

2010-04-12T10:02:00.003-04:00

I find this hard to believe even as my fingers are typing it: I have less and less to blog about. Indeed, Martin has had remarkably good behavior for the past month or so. His communication has improved dramatically. His school routines make him a generally happy guy. It's not that we don't have our moments. Martin still fights us sometimes. He still experiences moments of communication difficulty. He still lines things up and repeats movie lines. But things have really settled down. Honestly, life as Martin's parent is not the gut-wrenching thing it was six months ago when we were in the midst of school trouble, tutor meltdown, and all-around Martin unhappiness.

So maybe it's time for the blog to go in a new direction? Maybe it won't be a chronicle of parental difficulty peppered with funny autism stories. Maybe the funny stories can come forward with the parental troubles only popping up periodically in the background? So here goes...

Yesterday, Martin was saying lines from the first season of the Muppet Show. If you're ever interested in catching up on the stars of late 70s pop culture, rent this disk. You'll see episodes with Joel Grey, Rita Moreno, and Florence Henderson. You won't believe how hard you will laugh when a six-year-old calls out, "Let's welcome our special guest star, Mister Jim Neighbors!"

Martin is especially intrigued by a recurring sketch on the Muppet Show. The Muppets are ballroom dancing to cheesy orchestral music. A couple glides to the front of the stage to tell a funny joke. The laugh track sounds and then another couple moves forward. Martin replays these scenes with his animal figurines. He hums the cheesy music, moves an animal couple forward, tells a joke, simulates the laugh track, and then starts all over again. After awhile, he breaks off the scene and does the Muppet Show introductory song, complete with Gonzo attacking the O in "Show" with some sort of gong. It's awesome to behold.

I used to wonder if Martin had any chance at a "normal" life. I also wondered if we would ever have a "normal" parenting experience. I didn't want these things because I think normal is so awesome and something to aspire to. Rather, I just wanted life to be easier for all of us. Life seems to be getting easier. And it's nowhere near normal. I like that.

wrong

2010-04-06T21:02:00.003-04:00

So my recent post about Martin and his superhero persona was all wrong. Really, Martin is Irrational Man, a creature fervently committed to things that make no sense.

Example #1: Martin is convinced that I should never, ever drive the family car. When we're going somewhere as a family, Martin asks if I will be the passenger and my husband will be the driver. Today, I had to drive Martin to speech while my husband stayed at home with our daughter. "You can't drive, Mama," Martin said. "I am a small boy that can drive, but you cannot drive." He was so convinced that I should not drive that he began to cry, silently, in the back seat while I pulled out of the driveway. The whole way to speech he mumbled that he knew how to drive and that I should not be driving.

(As far as I know no one has ever told Martin that I once drove the dean of the University of Chicago Divinity School into a snowy ditch or that I once tipped over my motorscooter in front of a bar full of Harley riders, prompting one of them to cry out "Biker down!" As far as Martin knows, I am a safe, if somewhat timid driver who always gets him to his destination.)

Example #2: Martin is convinced that if Sasha grabs her toes she will be able to pull them right off her feet. Whenever I take them out in the double stroller, Martin is grabbing at Sasha's hands within a few minutes. "Don't touch your feet, Sasha," he yells. "She will pull her toes off!" No amount of reassurance convinces him that Sasha's toes will stay attached to her feet.

I know that all kids have their irrational moments, but Martin's language difficulties make it particularly difficult to help him move from irrationality to rationality. He really is convinced that I shouldn't drive him anywhere and that he is all that stands between Sasha popping her toes right off her feet. When I tell him that I am a decent driver, he just looks confused. When we tell him that Sasha's toes will remain intact, he looks skeptical.

I'm not seeing any way to get through.

martin's top ten easter moments

2010-04-05T06:33:00.003-04:00

10. Wearing rain boots to church instead of proper shoes.

9. Eating doughnuts for breakfast (at church)

8. Making a nest out of plant detritus for his Easter eggs.

7. Having homemade pizza for lunch instead of ham.

6. Singing in the children's choir barefoot.

5 .Asking when we can watch Duke's big game. (Answer: Monday)

4. Ringing his bell through the entire song rather than during the appropriate chords (again, during children's choir)

3. Yelling "That was great!" after the choir practiced the Hallelujah Chorus.

2. Eating the chocolate rabbit with the gold foil still on it.

1. Not dressing up.

GF

2010-04-02T20:43:00.005-04:00

I completely understand why Good Friday and Easter make no sense to anyone outside the Christian tradition, especially as these commemorations of very serious events often coincide with egg hunts and ingesting jellybeans. Or as a little card my friend sent to me put it: "Adorable candy will help distract us from the astounding horror of a man being nailed to a cross."

In the spirit of full disclosure, I got my kids some nice chocolate rabbits, but mostly because I want to help eat them. In fact, I'm committed to telling my kids about Good Friday and Easter because there is no Christianity without these events. Tonight, our family did a little service called Tenebrae. You light 12 candles and read the story of the last supper and crucifixion. Along the way, you extinguish candles. Martin and Sasha were more than happy to participate in that part.

When I put Martin to bed, I asked him about the story he heard. "What happened to Jesus?" I asked him. Martin stayed silent for awhile and then said, "I don't know." After a pause, I said, "In that story, Jesus died." Martin looked at me awhile. The he asked, "He dived?" "No," I answered, "He died." "No," Martin said, "He dived. He dived into the water with a splash. And then he fived. He fived with all the other numbers." I waited for him to finish with his verbs that rhyme with "died." When he did, I said, "I guess you heard the story differently than I did."

Maybe I should expect utter nonsense when I tell a five-year-old autistic kid about a state execution with religious significance? Or maybe the Easter part of it will be easier for him to understand than the Good Friday story? Whatever the case, I feel the need to keep trying, to give him a chance to hear something and take it in as best he can. I don't want him to come back to me as a grown person and wonder why I tried to obscure the hard stuff with some chocolate rabbits.

two super Cs

2010-03-31T09:02:00.003-04:00

Martin has two dramatic persona. Maybe superhero terms can describe them best. The first persona, Super Charming Child, a little person with a winning grin, a jolly laugh, and an ability to crack up strangers when he bursts in a door and yells, cheeringly, "I'd like a bowl of chocolate ice cream, please."

And then there is the second persona, Contrary Guy, a being that resists reality in all its forms, who insists that the day is Monday when it's Sunday, who is sure that a book is in our house even though it was returned to the library the day before, and who repeats these statements that counter reality like some yogi with a working mantra.

Most of us have our Contrary Guy moments. We are desperate - sometimes - for the world to be other than it is. But we are usually more private about it. We whisper prayers. We tell our best friend over coffee. We write it down in a notebook and then close the cover. But Martin - like every kid, I guess - is Contrary Guy for all to see.

How do you help a kid see that this urge to change things will be with him forever without sinking him and yourself into total depression? Is that why yogis have mantras?

the line up

2010-03-29T07:21:00.004-04:00

Martin lines up things. I walked into my bedroom on Saturday only to find over one hundred Lincoln Log pieces saluting me from the baseboard. Yesterday I found crayons organized in the shape of a house. Beside it stood a tree made entirely of cards from a Crazy Eights deck.

Martin has been lining up things since he was one year old. It's one of the signs that a kid might be on the spectrum. (At the time, we didn't know the signs and simply thought that Martin was incredibly organized.)

I wonder if Martin will always line up things? Maybe he'll be obsessed with alphabetical order on bookshelves? Or having spools of thread organized by color? Or maybe he'll come up with an order all his own?

remembering

2010-03-26T22:58:00.004-04:00

Sometimes, parents of kids on the spectrum don't even know their child has a problem until they have another kid a few years later. The new typically-developing kid starts asking questions, answering questions, and understanding instructions in a way that makes the parents realize that all is not well with kid #1. I've heard of this happening more than once.

It did not happen to us. In fact, I found out I was expecting kid #2 around the same time Martin received his diagnosis. I've wondered at what point, if any, our second child would "lap" the first in terms of verbal development.

Sasha, who is almost two, talks a lot. She requests soft-boiled eggs in the morning. She can tell us that her diaper is messy. She can tell you how old she is. Of course, she cannot speak as well as Martin. Her brother's sentences have grown increasingly complex. I counted eleven words in a sentence he said yesterday.

But Sasha - even before she has turned two - seems to have an easier time at the back-and-forth of human conversation. When asked a question, she looks interested and responds. Sometimes her responses make no sense - like when she asked for a pair of pants to put on her head when I inquired about her clothing needs. But she can have a conversation. In fact, she seems to like having conversations.

This capacity of hers simply blows me away. I'm constantly amazed that I do not have to ask her to look in my eyes. I'm surprised that she listens to what I'm saying. I can't believe that communication doesn't have to be an uphill battle.

But then I remember that Martin is the one fighting the real uphill battle. Not me. It's so easy to forget that.

victory!

2010-03-24T21:07:00.005-04:00

The new health care legislation will have a huge impact on Americans with autism and their families. Insurance companies will no longer be able to deny policies to autistic people when they (or their parents) apply for coverage. For people who have to buy insurance on the open market, this new provision will take them out of the insurance no-man's-land in which they've been living. According to the new legislation, insurance companies must also cover behavioral therapies that have typically been excluded in the past. The particular therapy that we used with Martin for a year and a half, ABA or Applied Behavioral Analysis, is among the therapies that will now be covered.

I've been trying to figure out if our family's biggest autism/insurance worry has been addressed by the legislation. My insurance plan, which I participate in through my employer, specifically excludes speech and occupational therapy prescribed for people with autism. As I've noted in earlier posts, if you have a stroke the company will provide speech therapy. If you break your hand and have trouble with handwriting, they'll cover occupational therapy. If you need those things because you're autistic, you are out of luck. That's the policy.

Some states have made this practice of exclusion illegal. I'm curious if the new legislation has taken care of it at the federal level so that the battle won't have to happen in 50 different places. But I can't find out. My Google searching took me only to a blogpost that made me sadder than I've felt for awhile. I'll paraphrase the post:

Why should parents of non-autistic children have to pay for expenses that ought to paid by autistic children's parents? We pay enough for insurance already. We struggle to make ends meet already. And autistic kids' parents want more of our money even though our kids are fine and their kid is a problem?

I'll stop paraphrasing there, but let me assure that the blogger - like so many cyber sages - only got meaner as the post continued. I sometimes forget that a lot of people simply never give a crap about an issue until it affects them. So no wonder passing legislation that moves us toward universal coverage has been so contested. If there are citizens with no mercy for autistic children, how will we ever be a country that offers support and care to people that lack autistic kids' cuteness and innocence? There are a lot of people in our world who aren't very cute and who contribute in some ways to their own suffering; but they need love and support nonetheless. Maybe I feel this way because I study prisons. And there is no better place than our prisons for seeing what results from large-scale neglect, shame, deprivation, and abuse.

We get the kind of society we are willing to pay for. If we don't want to help out autistic kids, we'll have a lot of stressed out families and lots of children who will be locked in their own worlds even though we have the resources to help them get out. But on the upside, there would be freedom ringing.

a victory a loss

2010-03-22T06:48:00.003-04:00

Martin and I took a field trip to Massillon, Ohio. We drove to Target. I needed to return some shoes. Martin wanted a president placemat with two Grover Clevelands. (Cleveland was the 22nd and 24th president, but is often pictured only once in packs of flashcards and other presidential items. Martin finds this to be an injustice.) Neither of us found what we really wanted so we headed to the snack bar for consolation.

Martin chose a chocolate milk and I (in a fit of insanity) chose a cherry ice-e. (It was delicious.) We sat at a tiny table by a sunny window. It felt like something other than a corporate, chain store experience. I felt like we are on a date in the 1950s. When we finished our drinks, we held hands and headed for the parking lot.

As during the Target trip, Martin was a real sweetheart most of the weekend. But I still haven't been able to trim his fingernails. I've tried the last three nights. Usually, he's so sound a sleeper that I can trim his nails at night. But the last few nights he has moved around, jiggled his arms, and clenched his fists. So I've called off my mission three times. Martin is starting to look a little grubby.

But I'll take happy and grubby any day.

moving up

2010-03-20T21:31:00.003-04:00

A #1 seed did not go down in the first round. The second round, however, brought the stunning upset of Kansas, the team favored to win the whole tournament. A player from Northern Iowa sealed the victory with an incredible three-pointer in the final seconds.

Against similar odds, Martin had a nice Saturday. Martin's weekdays are structured by school. Sundays involve several hours at church in the morning and often getting together with church friends in the evening. But Saturday, with its wonderfully (and sometimes frightfully) free hours, can be difficult for Martin. But today worked out all right. Martin slept late and lazed around the house in the morning. We picked crocuses in the yard. We wandered around the college campus in the afternoon. We ate dinner with friends in the evening and Martin ran around the yard and house with great freedom.

Maybe we've all had undiagnosed cabin fever? We've been grumpy almost every Saturday this year. Maybe it wasn't just a struggle to keep Martin happy and occupied? Maybe we all needed to get outside a little bit more?

Maybe we could improve our chances against our Saturday foe if we made getting outside a higher priority? It's a little hard at our house. We have a toddler. We live in town near a fairly busy street. Martin is not exactly skilled at keeping out of the street. But there are ways we could work around this. Maybe we just need to tromp through snow or rain or whatever to the closest open space and be outside no matter what. Every Saturday. For our sanity.

If we did this, I can see us moving up to an 11-seed.

the madness

2010-03-19T07:02:00.003-04:00

Yesterday, I watched 15-seed Ronald Morris come close to picking off #2 Villanova. A bit later, I saw a buzz-beater shot that put #13 Murray State over #4 Vanderbilt. The day was full of little upsets. Old Dominion over Notre Dame. Saint Mary's over Richmond. But the evening brought the most incredible game. #14 Ohio University rolled over #3 Georgetown. They flattened those guys, rolled them up, and mailed them back to DC in an envelope. It was awesome.

I watched basketball yesterday not only because I love the NCAA tournament, but also because I wanted to escape Martin's bad behavior. Because he had a mild fever two days ago, he could not attend school yesterday. My husband and I took turns during the day trying to keep him occupied, but also rested up from his bout with a cold. Martin was not interested in our offerings. All he wanted to do was watch movies. It was a showdown.

I sometimes wish the world was seeded like the NCAA tournament. Martin would be the #15 or #16 seed, battling a list a foes. The #1 seed of going through a day like a normal kid. The #2 seed of fingernail clipping. The #3 seed of haircutting. The #4 seed of going to a party with friends. The #5 seed of eating vegetables. As we witnessed in the tournament yesterday, it is possible for the 5s, the 4s, and even the 3s to be overtaken by the underdog.

I want the seedings because then I and others could know that it is a huge accomplishment when Martin does some of those things that are normal for everyone else. "Martin eating peas?" we'd ask, "Well, I guess we have as much chance at that as UTEP over Butler. And we all know how that went." "Fingernail clipping? Well, I guess a 15 has taken down a 2 only four times in history, but remember how awesome it was when Richmond beat Syracuse the year I graduated from high school? It could happen again. You could clip Martin's nails successfully and without incident. Just believe."

"Going through a day like a normal kid?" A 16 has never, ever defeated a 1. I shouldn't get my hopes up. That doesn't mean it can't ever happen. But if it does, I'm storming the floor.

hiatus

2010-03-17T20:20:00.003-04:00

I took a vacation from the blog because Martin was away for several days at his grandparents' house. Then he and his sister returned with coughs and ear infections. I went from a quiet house that reminded me of my pre-child days to feeling like an embittered Florence Nightingale.

Like most people, Martin is not his best self when sick. Some research shows that autistic kids act asymptomatic when they have high fevers. Kids who can only say single words burst out in full sentences, such as, "These sheets are really soft." It's mind boggling for parents. Researchers, too, have no explanation for the phenomenon. Apparently, Martin's fever was not high enough. He simply demanded his own way and refused to listen even more than usual. I guess low fevers could be said to heighten the symptoms, at least in our household.

When Martin refuses to listen and acts willfully in bad ways (like today when he took his tricycle and rode it down the sidewalk until the mailman found him), I'm ready to throw in the towel. I simply do not know how to make him listen or get him to cooperate or help him avoid danger. Most days aren't like this. Most days involve a combination of listening and not listening, good and bad behavior. But today was all bad. Bad bad bad.

Until bedtime. Martin asked me to lay down by him and sing a song. Then we talked about how he had a hard day and that it was hard because he had trouble listening. I asked him if he'd like to have a better day tomorrow. "Yes, I do want a better day," he said.

We'll see what happens.

out and about

2010-03-12T10:36:00.002-05:00

Martin is acting like a candidate for small-town mayor. Yesterday, we took a walk and he decided we needed to visit people. We stopped at one couple's house. They were home and invited us in for awhile. We continued our walk to another family's house. They weren't home, but Martin knocked a lot anyway. Then he stopped at a house on our block - the home of an older couple we don't really know - and asked if we could meet them. I expected him to kiss the next baby he saw.

There are ways that the mayor analogy breaks down. At the first couple's house, Martin took off his boots and crawled into their bed while I wasn't looking. At other moments, he ran away from oncoming dogs...really small dogs. So he betrayed some of his odd tendencies. Overall, though, he was so friendly and eager to meet people. He broke down all the stereotypes of people on the spectrum

With moments like these, it's easy for people to meet Martin and have no idea that he's got issues. That's wonderful. But it's also difficult. For instance, I was chatting with a colleague about a local private school. I told him that Martin couldn't go there. He was really surprised. He couldn't believe that the teachers there would have difficulty with Martin. "Well, he is autistic," I said. Of course, my colleague knew this, but at the same time there are many moments when Martin seems to blend in with everybody and who can blame him for forgetting that our family's existence has been totally reshaped by autism.

mister friendly

2010-03-10T17:07:00.004-05:00

The proto-spring weather has persisted. On a walk this morning I spotted the first brave crocuses. The good feelings continue. Here's an example:

Martin is greeting everyone like an extra in a 1950s musical. "Oh, hello Laura!" he yelled to the little girl up the street. "Hello kids!" he exclaimed to some children who entered the gate at the park. "Hey, you are coming toward me!" he cried to the advancing jogger on the sidewalk.

Martin is also striking out into activities that he is sometimes timid about. He climbed to the top of one of the remaining snow piles, standing at least 8 feet above the ground. He hiked across the top of a snow ridge, getting his pants totally filthy and celebrating his achievement when he reached the end of his long walk. He just seems so happy.

If you we're ever planning to visit us in Wooster, now would be a good time. The balmy weather makes our Ohio reality recede from one's mind. And Martin might come up with a salutation just for you.

and the oscar goes to...

2010-03-08T20:35:00.004-05:00

Martin can make almost any small object into a character in one of his imaginary plays and musicals. The tiniest Lincoln Logs, plain wood blocks, Lego people, and plastic animals have all starred in these theatrical pieces. But that makes sense, because those things are toys. At other times, Martin has used carrots and celery, toothbrushes, sugar snap peas, and flower petals. In fact, if my husband and I misplace a small item, we check in Martin's room and often find that our toiletries and snacks have been enlisted for dramatic purpose.

When Martin enacts these little dramas, he is in his own world. This world has an internal logic, a screenplay, and usually a soundtrack. Each piece must run from start to finish. There are no interruptions allowed. It does not matter if a little girl at the library also wants to play with the dollhouse and its occupants. It is of no concern to Martin that the rest of the world is on a schedule. He's like a tiny Hollywood director, so relentlessly focused that nothing else matters.

I used to be more concerned about this activity, especially when Martin struggled so mightily to communicate with other people. But now that he has an easier time having conversations, I'm less uptight about it. Playing out these dramas seems to make him comfortable. They let him have the world his way, which is a nice change of pace for a kid who struggles against the endless ways the world expects him to conform.

I'd like to give Martin a tiny Oscar, for all his singularity of vision and all of his capacity to create his own worlds no matter how much his loving parents and others try to draw him out of them. While I would never want him to spend all his time immersed in his figurine dramas, I'm glad he has something he loves.

sunshine

2010-03-06T19:22:00.003-05:00

A sunny and warm(ish) Saturday in early March brightens the spirits of any Midwesterner. After months of gloom, frequent snow, and consistently freezing temperatures, northeast Ohio experienced the first beautiful, non-freezing Saturday in quite a long time.

The weather - and the outdoor opportunities it allowed for - lifted the spirits of every member of the household and seemed to dispel tensions that long winter periods can foster. The day was full of good things. A walk downtown to the farmer's market and library. Quiet time at home that allowed for reading in bed. An afternoon trip to the local outdoor gardens for the chance to ride tricycles though the many paths. At the moment, Martin is at a basketball game with his Dad. This is a peak moment as basketball games typically involve unlimited amounts of popcorn. A day full of good things.

The sun was not the only reason today was good. Unlike many Saturdays, this one was completely unscheduled. I had no papers to grade for Monday. We had no obligations. My husband and I could go in the directions the kids wanted to take us. Not without limit. When Martin asked for a second movie, the answer was no. But we had time for excursions, time to read together, time to color pictures. It was great. And unlike so many of his days, Martin had only one timeout.

I like to think I'm a multi-tasker. Liberal arts professors juggle lots of things in their typical day: emails, papers, lectures, student meetings, committee meetings. I often try to do too many things at once, but I'm usually successful. Home, however, is a much more difficult place to multitask. I love to cook. But if a child begs for snacks while I try to cook, I think I'll lose my mind. I don't mind changing diapers. But when a kid is yelling for more movies in another room, I want to knock myself out with the wet-wipe box.

I think our kids, whether they're on the spectrum or not, know when we're trying to do more than just take care of them. And there are times when this simply must occur. But days like today remind me how important it is to do one thing at a time in my house, at least as often as I can. We'll all be happier.

what works

2010-03-04T21:17:00.003-05:00

Despite many efforts designed to help Martin get through an afternoon of bowling with his classmates, he had a really hard time. He simply could not take turns. He had been told he needed to take turns. He had been talked through what it would be like to take turns. He acknowledged that he needed to take turns. But when the time came, he just couldn't do it. When I picked him up and asked him about his day, he said, "I didn't take turns."

We've tried many things to help Martin gain this skill. We've played very simple games in which turn-taking - not the game's content - was the point. We've created social stories about taking turns. His teacher had the brilliant idea of giving participants a number. It might not make sense to Martin that Josh goes first and then Rebecca and then Chaz. But if Josh is number one and Rebecca is two then the process might be easier to understand.

Maybe the problem is that Martin just loves bowling too much? When he plays, he stays close to the line all the time. He grabs for the ball the moment its crosses the threshold of the return ramp. He grabs the ball and spins around to push it off at shoulder height. There's not a moment reserved for looking down at the pins or positioning his feet. It is about throwing the ball as hard as possible as many times as he can.

Martin was sad after he arrived home today. He whimpered for awhile. He seemed truly befuddled by it all. It's as if he cannot comprehend why he would have to take turns when there's a whole bowling alley full of lanes, when there are rows of balls for all to see, when it seems that every child should be able to throw to their hearts' content.

I'm still trying to figure out what might work in this situation. I want to know what little trick I need to try. I want to use it to help Martin understand. And then he can bowl forever, as far as I'm concerned.

sweetness

2010-03-02T20:31:00.004-05:00

Tonight, Martin thanked God for the opportunity to go to the grocery store. Some nights, Martin can't or won't say anything when we ask him if he is thankful for anything or if something in his day made him happy. Unless we prompt him with some of the events from the day, he looks at us with searching eyes and says, "I don't know."

On his good days, Martin can come up with an answer to the thankfulness question. Today, he had a good day at school. Then he had a good visit with his speech therapist. Although he wouldn't touch the posole I made for dinner, he ate carrots, applesauce, and homemade bread. When he was finished, he accompanied us to the grocery store. He wore sunglasses as he rode in a cart with his sister. When the bagger put the bags in our trunk, Martin thanked the young man for each one. And when the bagger closed the door, Martin called out, "Um....thank you....thank you....um, have a good one."

Martin rode home in the car, talking about how dark it was with his sunglasses. He walked into our house and did a pretty good job going through his bedtime routine. Before his prayer, he told me to make the blankets and pillow into a birdhouse for him to sleep in. Pretending like I know how to make a birdhouse out of blankets, I industriously folded the blankets around him, patting them when the birdhouse was finished. He seemed ready to go to bed. That's when he thanked God about going to the grocery store.

I'm thankful too. I have to remember that if Martin were my child 20 years ago, we might have been told that he would never speak. We might have been encouraged to institutionalize him. Or we might have been told he was hopelessly disabled. Though many of our days are challenging, I have to remember that the challenge is a gift. The doctors and the teachers and the therapists are trying so hard because they believe it is possible for Martin to learn to speak, to understand, and to have meaningful relationships.

And to love wearing sunglasses to the grocery store.

shampoo?

2010-03-01T20:27:00.005-05:00

http://www.nytimes.com/2010/02/25/opinion/25kristof.html?scp=1&sq=kristof%20autism&st=cse

Well, I was having a decent week until I read this editorial by Nicholas Kristof. I thought it was only his articles with terrifying and awful details about South Asian prostitution rings that made me sad. But he also writes about environmental hazards. And he connects these hazards to autism.

Kristof, like all people who consider the possibility of links between autism and the environment, doesn't have lots of hard data yet. But he is among the people trying to get us - including scientists - to ask more questions and do more research. I'm glad he's using the platform of a popular newspaper to ask questions about environmental toxins and public health.

At the same time, I can't shake the feeling that someday I'm going to find out that my shampoo or my cooking containers or car fumes hurt Martin's brain when he was only a fetus. And that is a bad feeling. It's a bad feeling not only because there's no way to verify (or not verify), but also because if it has even a remote possibility of being true, we won't just have an autism epidemic, we'll have our hands full of devastated mothers. Like the Thimerosal moms of the 1970s. That prospect scares me.

I just have to remember that it's more important - for me, at least - to take care of Martin as he is. He is what he is and there's no changing it, no matter what the original cause. Since my hands are full, I'm glad that some scientists are trying to figure out this confusing condition.

gimme

2010-02-28T20:38:00.003-05:00

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?

2010-02-24T21:08:00.004-05:00

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

2010-02-23T06:51:00.003-05:00

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

2010-02-21T20:29:00.004-05:00

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

2010-02-19T06:48:00.004-05:00

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

2010-02-17T21:04:00.006-05:00

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

2010-02-16T20:03:00.005-05:00

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

2010-02-15T20:58:00.003-05:00

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

2010-02-14T20:56:00.002-05:00

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

2010-02-13T12:36:00.004-05:00

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

2010-02-10T20:42:00.002-05:00

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

2010-02-09T20:06:00.006-05:00

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

2010-02-08T09:06:00.002-05:00

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

2010-02-06T20:44:00.006-05:00

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

2010-02-04T21:06:00.003-05:00

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

2010-02-03T20:12:00.004-05:00

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

2010-02-02T19:59:00.003-05:00

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

2010-02-01T20:10:00.004-05:00

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.

par-teh

2010-01-30T18:27:00.003-05:00

Martin attended a classmate's birthday party today. There were many nice things about. Martin enjoyed the cake and ice cream. My husband, who took Martin to the party, got to meet more parents of autistics kids then he ever had before. It was like an impromptu support group. In a good way.

I was worried about one thing: the party was held at an ice rink. I was a little concerned about the setting. Martin doesn't like to try new things. He struggles to follow directions when told how to do new things. And it can be hard for him to tell his limbs what to do. I wouldn't say he's uncoordinated, but learning new physical skills is not easy for him.

To everyone's surprise, Martin happily put on skates when the other kids did. He held onto the instructors, and went out onto the ice. He stayed glued to their sides the whole time. But he did it. He stayed out on the ice with everybody else. A complete shocker.

This is a kid who gets upset when he visits a zoo that is not set up exactly like the one in Akron. This is a child who will eat strawberry jam, but not raspberry. But today he went to a brand new place, tried on skates, and went out onto the ice with absolute strangers. I'm taken aback. Par-teh!

postmortem ventriloquism

2010-01-28T20:13:00.005-05:00

Postmortem ventriloquism? What is that? Well, it's one of my spouse's favorite phrases. He uses it to describe the way living people ascribe words to dead people, like funeral sermons that go like this: "If Bill were here today, he'd be thrilled that Uncle Pat is wearing blue jeans instead of a suit. And he'd be so glad there's potato salad at the luncheon after the service." For my spouse, these funeral moments are among the strangest things human beings do. So he made up a term for it.

I've found myself having my own little moments of postmortem ventriloquism today. Two writers I love died in the last two days. J.D. Salinger and Howard Zinn. Even though most people over 30 give up on Salinger, I'm still a huge fan. And not because of The Catcher in the Rye. Instead, I have an abiding affection for the characters that make up the Glass family in "A Perfect Day for Bananafish" and "Franny and Zooey." And maybe everyone over 30 also gives up on Zinn. He was a certain kind of historian. And maybe those of us who are working historians don't do things his way, but I'll never forget reading A People's History of the United States. About 15 years ago, it rocked my world.

But why consider these two men on a blog purportedly about autism? Well, I have to wonder about Salinger's fictional characters, their savant-like knowledge, their inability to fit into the world. I would never go so far as to say that all the Glass children seem autistic. But there is a space between them and the world that reminds of the space between Martin and world. A space and a sadness. Somehow, Salinger treasured that space and made it seem less lonely.

And I think of Zinn and the way he spent his entire career trying to point out that how you tell a story matters. That it matters for all the people left out, like the Taino people who encountered Columbus. Only in the last few years has it come to the public that there are autistic people in this country. You see billboards and TV reports and People magazine covers about it. But it's such a recent event. I think of a friend of mine who grew up with an autistic sister. His family could find no help for her. They even drove across the country to see a doctor they hoped would help them. That doctor promptly blamed the girl's condition on the mother. There's probably thousands of people with stories like that. So Zinn makes me think about how I'm lucky to be dealing with autism at a time when other people have at least heard about it. And it makes me wonder who we're still forgetting.

So farewell J.D. and Howard. I won't try to predict what you'd say from the great beyond. But I thank you for shining the light on so many hidden and forgotten spaces.

hey, universe

2010-01-26T20:27:00.004-05:00

Martin was more pleasant this afternoon and evening than he's been in recent memory. He did not throw a fit, scream out in distress, or slam a door. I'm not sure what made it happen, but it sure was nice.

I'm gotten so used to frustration and fits that those things are the norm. That's not to say that Martin isn't a nice little kid. Sometimes he's positively angelic. But even more than typical kids, children on the spectrum seem to struggle so mightily when things don't go their way. It's the anger and frustration any of us would feel, coupled with the confusion that comes with having a language processing disorder.

I'm always reminding myself that even though Martin has made so much language progress, it's still not natural for him. He must feel - everyday - like some of us feel when we visit foreign countries and lack language fluency.

My hope is that Martin will someday catch up to his peers in language proficiency. Most of the professionals we work with think this is an achievable goal. In some respects, he has the chance of moving from the PDD part of the spectrum to the Asperger's end, which is marked primarily by social difficulties. Though I don't know what it's like to have an Asperger's child, I can't help but think that social awkwardness is easier to deal with than deficient speech. But maybe parents of kids with full-blown autism look at my experience and think it's a cakewalk.

Whatever the case, I'm glad for a good night. Thank you, universe.

games

2010-01-25T20:17:00.003-05:00

Martin played a game with me tonight. He doesn't play many games. Taking turns is hard for him. Learning rules to games can be hard for him. Somehow he knows factoids about William McKinley but cannot figure out how to play Chutes and Ladders.

Tonight, Martin wanted to play a guessing game. He laid about some animal figurines in front of him and said, "I am orange with black stripes. What am I?" Sometimes he would wait for me to answer and sometimes he'd jump in and squeal, "A tiger," and laugh uproariously.

While this game is very simple, it contains forms of speech that Martin finds difficult. It involves describing. It demands asking questions. It requires waiting for another person to answer and offering them another clue if they don't get it right the first time.

I got Martin to take turns a few times. Being the guesser proved more difficult for him. I said to him, "I have eight legs and live in the ocean. What am I." Despite having an octopus figurine right in front of him, he looked at me and said, "I don't know. What is it?" Even with more clues, it was often hard for him to guess. But sometimes he got it.

Martin has a lot of days where he's not in the mood to play with me. He'd rather construct little tracks for his trucks or line up marbles or use his stuffed animals to act out Sesame Street episodes from memory. In these ways, he still shows all the signs of being a child on the spectrum.

Tonight included moments when it seemed like we might be off that spectrum for just a little bit. I know I shouldn't want my kid to be any different than he is. And deep down I don't want him to be anything other than himself. But my heart is cheered when I can play a game with Martin. It means a great deal to me when he can say something and I can understand it. And vice-versa.

the new

2010-01-23T19:48:00.003-05:00

Here's how Martin deals with the new.......at least sometimes.

Today we decided for a trip to the Cleveland Zoo. Since our zoo membership at Akron gets us in free in Cleveland as well, the stakes were low. A little bit of gasoline. A little bit of time. We hoped for the best. And we certainly visited a nice zoo. The primates were especially fun. Two areas of the zoo were full of a variety of monkeys, gorillas, and orangutans. My baby daughter loved it. She spent a good 10 minutes communing with a tiny spider monkey that crawled up to the glass just inches from her. Martin concentrated on some ramps and the tram that took people around the zoo. If he wasn't thus occupied, he asked to go to the Akron Zoo.

Here's how Martin deals with the new.......other times.

Martin and his Dad work nearly every day on Spanish using Rosetta Stone software. It's a perfect program for autistics, combining words and pictures to aid memory. Martin not only knows a lot of Spanish, he has entire sections of the Rosetta Stone program memorized. He says phrases from the program and then imitates the noise the program makes when you get answers right. Typically, Martin answers questions and points at pictures while my husband operates the mouse. Last night, Martin said that he wanted to try. He sat in the office chair, put his tiny hand on the mouse, and navigated his way through several screens. He had never done it before. We hadn't told him how.

We never know what new things will work and what new things won't. Maybe we should try all new things inside the boundaries of the Akron Zoo?

my way

2010-01-21T20:15:00.004-05:00

You know that song, "My Way," by Frank Sinatra? I hate that song. Not just because it's schmaltzy. But because it presents doing things "my way" as some sort of renegade thing that makes you truly human. Because I have an autistic five-year-old who struggles the moment anything doesn't go his way, I'm a little sensitive about popular wisdom that trumpets the self at the cost of other relationships.

Like so many kids, Martin wants things to go his way. In that way, he is not unusual at all. But when he's faced with something that gets in his way, he has fewer resources for dealing with it. Sometimes, he doesn't understand that his way isn't going to happen. Other times, he can't express his feelings about not getting his way. And still other times, he can express how he feels, but only in socially inappropriate ways. Maybe it would help if he could sing Sinatra? At least itcould help him channel his feelings?

My husband and I are constantly working on Martin's unwillingness to try other ways. It has hindered him in all of his school experiences until his current one. It's the reason he still attends a Sunday School class for preschoolers rather than the class for kindergarteners and first graders. It's why we tell babysitters to let him do what he wants to do, rather than leave them with a kid who might kick at them and scream.

I could handle all of those adjustments if I was not afraid that Martin's fundamental ability to relate to others is at stake. If you do things your way, where is all the wonder that comes at discovering something that someone else introduces to you? Where is all the joy (and terror) of risk because someone else asked you to do something you never imagined? Unlike Sinatra, I would regret it if Martin never knows what that experience is like.

the thin green line

2010-01-20T19:45:00.003-05:00

Martin's class has gym once a week. The kids go to the gymnasium. The first thing they do is run laps. They follow a green line around the gymnasium.

Today there was a school assembly in the gymnasium. When Martin arrived, he figured it was time to run laps. He refused to budge from the green line. I guess he caused a little scene. After school, we found the following text (called a "social story" by educators and therapists) in Martin's backpack:

"The Green Line

In school, we go to the gym for many different reasons. We go for assemblies, pictures, and gym class. When I am in the gym, I do not always have to stay on the green line. I will listen to the teachers and go where they tell me to go. Sometimes I will play in the middle of the gym. Sometimes I will sit on the wooden bleachers. Sometimes I will sit on the gym floor. I do not always have to stay on the green line."

For some reason, autistic children seem to respond better to complicated social situations when words are written down or pictures offered. It helps them process it all. We went over this text with Martin tonight. I asked him what happened at the assembly. He still seemed confused. "The children were lost," he said. "They were singing and I do not have to stay on the green line."

These moments break my heart because Martin so clearly is at a loss. He can't figure out what the world expects of him, even when it's spelled out on paper in front of him. He just wants to go to the green line and run laps, just like he does every other time he's gone to gym.

i love you, MLK, but...

2010-01-18T21:47:00.002-05:00

Another crummy day. Out of sorts. Unhappy for no apparent reason. Willing to go to the mat over eating a few green beans.

I can only go with Martin's one request (besides to watch the Muppet Movie). He asked me this morning if he could go to school.

Good thing tomorrow is not a holiday.

for what it is

2010-01-17T21:33:00.002-05:00

Inexplicably bad behavior. Despite a nice morning, an afternoon visit to the ice cream shop, and friends for dinner, Martin was a P-I-L-L. He asked for The Muppet Movie at least 100 times. He disobeyed. He swatted at people and tried to kick. No fun at all.

Sometimes Martin gets really out of sorts. I have no idea why. There are two problems in this situation. First, the world doesn't slow down when he's in this kind of mood. The people invited to dinner more than a week ago will still arrive on cue. And second, the things that normally help him snap out of a funk don't seem to work. If ice cream can't make a 5-year-old happy, what will?

My only guess is that Martin - like other typical kids - gets tired and cranky and takes it out on everyone around him. I guess that makes him like some adults as well.

So I'm not in the best blogging mood tonight. Like Martin, I think I just need a good night's sleep and a clean slate in the morning.

the perils of bowling

2010-01-15T06:48:00.003-05:00

Martin's class went bowling yesterday. He scored a 69. According to his teacher, Martin seemed to have a lot of fun once he got the hang of things. But the first few rounds were fairly stressful. Martin did not want to take turns.

For some reason, autistic kids have a hard time learning how to take turns. Part of Martin's therapeutic program last year included reading stories about taking turns, rewards for taking turns, and games about taking turns. He's made progress. He can sit through a game of Crazy Eights (with other rules modified). But Martin did not want to wait for his turn to bowl yesterday. And he was upset about it the rest of the day.

I could tell that Martin was upset for two reasons. He misbehaved all afternoon and early evening. And then close to bedtime, he became mournful. He came to me, with tiny tears in his eyes, saying, "The arrow was not pointing at me. It was not my turn. And Mrs. S said I should wait and Mrs. F said it was not my fault." All of these sentences referred to bowling, but then Martin moved on to other things he thought were sad. "I saw a picture of a baby in the sky. And it was baby Jesus. Let's go find the baby....And I think the Muppets are scared because it is nighttime."

I'm not sure if bowling was so upsetting that Martin had to experience a full-on, makes-no-sense, depressing evening, or if he just connected anything he feels confused about to his frustration at the bowling alley and needed to say those things out loud. I just let him sit on my lap and tell me about the bowling and baby Jesus and the Muppets. I offered him a bowl of cereal, which seemed to make things almost better. Then I tucked him into bed - surrounded by stuffed animals - and he fell fast asleep.

I'm reluctant to try bowling again.

strange and unstrange

2010-01-13T20:21:00.005-05:00

Tonight we had one of the most pleasant meals in the last two years. Both children sat at the table. No one cried. Both kids ate all their food and got a treat of chocolate ice cream. There was no food on the floor, well, not counting some stuff that landed there yesterday.

It's not that Martin never eats a full meal. If we serve spaghetti with peas and applesauce, we've got a good shot at a clean plate. He also eats sandwiches and other pastas and pizza. But tonight was a stretch: omelettes. My husband cooked a cheese omelette and I cut it in half, one slice for each kid. I expected Sasha to eat hers. She's like a 20-pound garbage disposal. I had no aspirations that Martin would eat his, unless bribed to take one bite in order to get a helping of applesauce.

When Martin arrived at the table, he looked at me and asked, "Is this a pancake?" Immanuel Kant be damned, I answered, "Yes, it's a type of pancake. It's an omelette-pancake." Martin started to eat. And even though omelettes don't taste like pancakes, he kept going after the first bite. He ate the whole thing. Then he gobbled down some carrots and some applesauce. I was completely amazed. I wondered if this is how parents of typical kids feel all the time.

I knew we couldn't get through the whole evening without a little bit of funkiness. Just before bed, Martin happened upon some stamps that had arrived in the mail (from one of those insidious companies that sends you stuff you don't even know you might want). The stamps were from Liberia, a set commemorating the U.S. presidents. Martin was elated. Indeed, he was sure he could not go to bed without the stamps. In fact, I think I hear him monkeying around upstairs, probably pining for the stamps.

As he glanced at the set of stamps, he looked up at me in wonder and said, "Look, it's John Adams." Strange. But tonight he was also a little boy who tried some new food and ate it all. Unstrange.

words

2010-01-12T21:49:00.003-05:00

I was giving Martin a bath tonight. While he was splashing around, I asked him who he loves. He got a big grin on his face and said, "I love me." He noticed my amused reaction and repeated it, "Yeah, I just love me." It was one of those late 1970s, free-to-be-you-and-me moments.

While Martin brushed his teeth, I told him that I loved him, too. He seemed to both get it and not get it at the same time. He knows what the phrase "I love you" means. But his earlier efforts to be playful with the phrase posed a problem. He looked at me quizzically and asked, "Do you I too love me?" If you need to return to that phrase, it's not because you're a bad reader. It makes no sense. Martin, however, seemed unphased when I couldn't answer his question. He just kept brushing.

Martin's little sister is starting to string words together. She can say, "Where's Mart?" and "Go downstairs." I wish I could better remember Martin's verbal life at the same age. I know he said lots of single words. Our housemate at the time made a list to keep track of them. I know when Martin said zebra for the first time. But I wasn't looking out for developing sentences. I had no idea that every phrase he used was simply repeated from memory with no real sense of what the language was doing.

Martin still has many moments when language trips him up. Things that seem relatively simple - if they're new to him - can be utterly baffling. He looks up blankly even though were not speaking Chinese.

But I him too do love.

empty of bologna

2010-01-11T21:15:00.003-05:00

Last night, Martin and the rest of the family picked me up at the airport. I returned from a wonderful, three-day conference in sunny San Diego. Did you know that fish tacos are a perfectly appropriate breakfast food?

Unlike other times I've returned from trips, Martin was quite talkative. He told me he had gone to church in the morning. He told me our friend, Alex, had visited. He told me of his plans to go to the Akron Zoo - immeadiately. I turned around to him, reminded him that it was late at night, and asked him if he was full of bologna. He put his arms on top of his head, felt around a little bit, and replied, "No, I'm empty of bologna."

Martin had a good few days while I was gone. Each school day gets better and better. No time-outs today. On Thursday, his class is going bowling. On Friday, his grandparents are coming for a visit. He seems to be in a good space. I can tell this because he was in such pleasant spirits tonight. He read books aloud. He tried a "different cheese sandwich," even though we didn't prepare it the way to which he's accustomed. And he went soundly to sleep after thanking God for zoo animals.

I agree. He is empty of bologna.

got to admit

2010-01-06T20:58:00.004-05:00

How does that Beatles song go? Not the one about Scandinavian trees, but the one with the line, "I've got to admit it's getting better, a little better all the time." That's school right now. Day two involved just one timeout, at lunchtime. Day three had no timeouts, but did include a meltdown at "grooming time," when the whole class brushes their teeth and washes their cute little faces. Because he had no timeouts today, Martin got a reward of chocolate ice cream.

Today was important not only because Martin made progress at school, but also because he met a new friend. Let's call him Jake. As far as I can tell, Jake is a sort of play therapist. He works with all sorts of kids on the autism spectrum. Somehow, ostensibly because he's going through a school transition, Martin qualifies for some time with Jake. (Don't tell my insurance company that my kid's autistic. That's just between you and me.)

Martin had his first appointment with Jake today. They played some games. They worked on things like taking turns, putting things away at designated times, and talking about feelings. I got to sit in on the last 15 minutes of the session. Martin didn't do everything Jake asked, but he enjoyed working with him. And when Martin and I got ready to say a prayer before supper, I asked Martin what he was thankful for. "Jake," he replied. I just had to squeeze him.

Things aren't perfect at school. I'm really glad that the teacher works on "grooming." It's a huge challenge for Martin. He doesn't want to get haircuts, have his fingernails trimmed, or (I hate to admit) wipe his bottom. I'm thrilled that a teacher is working with Martin not only to learn to read better, but also to stretch him in the areas where the real world is the hardest for him. I'm hoping that if I send his favorite toothpaste along, things might get easier.

By June, I hope we'll be singing about strawberry fields.

grades

2010-01-04T20:31:00.003-05:00

Drum roll, please..........

The first day at school was.........

A resounding "OK."

Martin had a mostly uneventful day in his new classroom. He refused to listen a few times and found himself in timeout. He told me that he played some games. He told me liked his teacher. He was in good spirits this afternoon and evening. He went to bed without a peep at 7:50, a little earlier than usual.

Having vivid memories of Martin's other first days of school, I consider this day a victory. When Martin was just three, he got politely expelled from preschool after four days of his refusing to do anything the teachers said. (This was just prior to diagnosis.) When he started in a special-needs preschool program just a few months later, he had to be carried into the classroom as I walked away sadly. Even with a tutor helping him last year, Martin struggled for the first six weeks in his mainstream preschool class. And you've all read how he did with no tutor this year. We decided to use that old college romance tactic of breaking up with the school before they could break up with us.

Martin went to school by himself today. And it went just OK. But just OK - even if it involved some disobedience and timeout sessions - is something I welcome. And this seems perfectly fine for me, even if I was a kid with enviable report cards back in the day. Before I had a kid, I would probably have expressed a lot of ambivalence about having a kid who gets a "C" on a good day. I'm fairly tough on the kids in my classes. Having Martin hasn't made me want to promote every C into an A. Instead, I just don't care that I have a kid who gets Cs, as long as he seems relatively happy and healthy and is learning how to be kind to people.

Tonight, I remembered something important I had forgotten to mail. Martin saw me rush into my room, dig through my handbag, and search for the lost envelope. He touched my arm and said, "Relax, Mama."

A+

i love ya, tomorrow

2010-01-03T21:18:00.003-05:00

The big day is almost here. The Muppet lunchbox is out of the pantry. The yoga mat is tucked in the penguin backpack. School starts tomorrow.

While I feel fairly certain that this classroom is the best place for Martin right now, my relief comes mostly from the fact that he simply cannot be expelled (at least for being autistic...I guess he could get the boot if he brought a gun to school). I'm not going to get a phone call that Martin is misbehaving and the teacher doesn't know what to do. Martin might misbehave. He might frustrate his teacher. Nevertheless, there has to be a place for him at public school, just as he is, no matter what. After a year-and-a-half of walking on eggshells, I can breathe a sigh of relief.

It might seem like low standards when your most powerful feelings about a school stems from your kid's lower chance of expulsion. Of course, I care about how Martin will spend his day, who he'll get to know, and what he'll learn. But Martin finds a way to learn even in the worst circumstances. Despite all the craziness of this past fall, his language exploded and his reading totally took off. Even if his new classroom is only average in comparison to other autism-specific classrooms, it will be far more suited to him than his classroom or homeschool experiences of the past semester.

In the end, tomorrow's transition might mean the most to me and my husband. We hope that it provides the stability we've been searching for and a break from all the work we've done on our own. If it does even a little bit in either of these two areas, I can easily say that I love the new school.

stories

2010-01-01T21:02:00.003-05:00

Have you ever watched "The Muppet Movie"? If you've never taken acid, this movie might be a close approximation (although I'm just speculating). We watched "The Muppet Movie" this evening for our family movie night. We often choose older films because they move a little slower than contemporary movies and are easier for Martin to understand. Going for movies from the late 70s and early 80s, however, does not guarantee Martin's comprehension. How is he supposed to know that Steve Martin's waiter costume is hilarious? Why would he be amused by references to Hare Krishnas?

We started to let Martin watched little movies when he was about 18-months-old. He liked one of those Baby Einstein (aka Middle-class Paranoia about Children) movies about farm animals. He also liked a collection of Sesame Street songs. But we never even tried a full-length movie with him. I had heard of other kids, sometimes only 3 or 4, who could sit through "Finding Nemo" and other Disney offerings. I had two reactions to this information. First, I couldn't imagine Martin sitting through a movie that lasted 80 to 90 minutes. Second, I was secretly glad that my kid didn't have an attention span that could be owned by Disney.

But I should have known that something was up. As I've mentioned in a previous post, Martin watched "My Dinner with Andre", practically the whole thing, when he was two. He just watched with a blank expression. I have no idea what he got out of it. Even now, I'm not sure what he gets out of movies. Tonight, he said things like "The dog [Rolf] is playing the piano" and "The frog and the pig are in love." I can't be certain that he followed the dialogue. I think most of his apprehension came from the characters' physical actions.

Watching Martin watching movies makes me wonder what movies (and stories) are for. Is sitting down for an evening with "The Muppet Movie" supposed to be a little acid trip away from from one's regular life? Is it there simply to make no sense and offer us a little silliness? If so, I think Martin gets it and enjoys it. In fact, I know he loves family movie night. But if watching children's movies is supposed to train us to love and understand stories, so that we might devour more of them as adults, I'm not sure it's working with Martin. And even though he sees movies sometimes and reads dozens of books a day, I'm not sure that the thrill and charm of stories has yet to work on him. I have yet to see him get carried away.

new

2009-12-31T08:14:00.003-05:00

Do you remember the stage in your childhood in which all you wanted to do was make forts with blankets? I have distinct memories of using all our dining room chairs and finding every blanket in the house to make forts that stretched across our entire living room.

Martin is in the midst of an obsession with blankets. He continues to sleep in a laundry basket, covered by at least four blankets. In the mornings, he brings piles of blankets into my room, spreading them across the bed to make a nest or a car, an airplane or bed. I'm hoping to work on our first fort this afternoon.

A warm blanket fort on a snowy day will be the calm before the storm. Tonight we venture out to a new year's party that tends to be a really fun time, but an absolute madhouse. The hosts have an awesome old house. Children run around like maniacs. Food spills off the tables. The adults keep calm with refills of wine. It's not for the fainthearted. But it's such a merry time, that I can't stay away.

I don't have a story of Martin having a terrible time last year. In fact, he had a really good time. He ran around all night, finding toys to play with and joining in the hollering. I did notice, though, that he struggled to interact with the other kids. Not that he didn't want to, but that he just didn't know how. So if a child suggested to him a way they could play together, Martin would say something completely ridiculous back. This didn't bother kids, but it did befuddle them. I'm curious to see how Martin experiences the party tonight. If it's a tough time, we'll leave early and find comfort in our blanket fort.

May we all find comfort in the new year. Happy wishes to all!

back to life

2009-12-29T20:06:00.004-05:00

We arrived home this evening after a Christmas visit to my parents' home in Indiana. Martin had a good time. He opened Christmas presents. He read his new children's dictionary. He decorated cookies. He ate only applesauce and jelly bread for Christmas dinner. And he was nothing but sweet to my brother's new girlfriend. An all-around good visit. But even those must come to an end.

Because Martin's little sister is not inclined to road trips, we're always devising ways to break up car rides. Today we tried a stop at the Toledo Zoo. We knew all the possible ways such a detour could go wrong. We could drive into Toledo at the moment Sasha was drifting off for an afternoon nap. Martin could expect "his zoo" (aka the Akron Zoo) and go completely nuts when he realized things were different. Or the below-freezing temperatures could leave us all miserable and grasping for reassurance that we're not complete idiots for taking our kids out in this weather.

None of these things occurred. In fact, it was a wonderful visit. There were approximately 15 other patrons at the zoo. There were plenty of indoor exhibits, including a swimming hippo and some gibbons wrestling over celery. The sun was out and the wind was calm so we never felt too cold.

It took Martin a good 10 minutes to get on board with our plan to simply stroll from building to building. But once he was with us, he had a wonderful time. He stared at fish with neon markings. He watched the white lions. He tried on animal costumes in the science center. He even pushed his sister in a wagon. By the end of the visit, he was exhausted. His head tipped over in sleep a few minutes after we drove away.

We took Martin to the Pittsburgh Zoo in August 2008. He didn't have a very good time. And he couldn't tell us why. Today was not perfectly smooth, but Martin could tell us what he wanted. He enjoyed trying a few new things. Now we're home and back to real life and hoping that his new thing next week - school - can go just as well.

merry christmas

2009-12-24T20:18:00.004-05:00

This could be called Martin's first Christmas. Yes, he slobbered on some packages when he was 6 months old. He was excited to find an orange in his stocking last year. But this year, he gets it. And that is a big deal for me because we're Christians and we actually take this holiday seriously.

All month, we've been lighting advent candles at suppertime. Every morning, Martin removes a little cloth covering up another picture on the advent calendar. He's identified Mary and Joseph and their donkey, wise men, shepherds, and a few doves (although he keeps calling them pidgeons). He learns carols during Sunday school. The other day, he asked me who we should go see in Bethlehem. "I don't know," I said, "Who?" "Zechariah," Martin answered. This surprised me. Zechariah (not the Hebrew prophet) does feature in the Christmas story. He's John the Baptists's father and he has a lovely speech near the time of John's birth. I have no idea how Martin knows about Zechariah. But he does.

Tonight at church, Martin returned people's "hellos" and "how are yous" with his own "Merry Christmases." It's such a surprise to me. And also such a gift.

Peace and love and joy to all of you who follow our story. You are also a gift.

my true love

2009-12-22T19:55:00.004-05:00

We have a mountain of paperwork to fill out. Signing up a kid for public school, especially if they qualify for special services, requires submitting an entire dead tree's worth of paperwork. Martin's educational transition also qualifies him for some new therapy. Getting the therapist up to speed requires even more paperwork. And we've also found out that Martin might qualify for a program through the local board that serves people with mental and developmental disabilities. To find out if he qualifies requires even more paperwork.

Though I'm an historian that likes shuffling through other people's old paperwork, I don't like going through my own. I've been making photocopies of Martin's first neurological report, his first speech evaluation, his first Individual Education Plan, and his recent (and horrifying) I.Q. test. It brings back memories of all the little doctor's exam rooms, waiting rooms, crammed school hallways, and the blood tests. (Yes, many doctors ask for chromosome testing with kids that present as autistic. Sometimes, the kids have a genetic disorder that insurance companies will cover, unlike straight-on, just-in-your-brain autism.) I remember asking Martin to say hello to the neurologist. He wouldn't. I remember wondering if he'd ever make it through the I.Q. testing with the educational psychologist who seemed, at least to me, to need a psychologist of her own. And I remember my husband and I and another nurse holding Martin down so another nurse could draw his blood. That was one of my 10 worst days ever.

The reports stand in stark contrast to the kid I've been hanging out with all day. I'm off work for the moment and the kids have been home all day. We went to the library. We had two friends over to play. We had popcorn and hot chocolate. Martin sang the 12 Days of Christmas to me at least 12 times. He mentioned that he'd like to get his uncle a clock for Christmas. He built a "dinosaur car." He ate green beans at dinner. And tonight, I tucked him into his laundry basket for another night's sleep. It was a good day. Not like anything in the reports.

Doing all this paperwork means that there are agencies and institutions out there that can help us. And for that, I'm very thankful. But I'm even more thankful that Martin wants to get me a partridge in a pear tree.

comfort

2009-12-21T09:59:00.003-05:00

Martin has gone to sleep in a laundry basket the last two nights. After long days of running around and getting dog tired by 7pm, he tells us he will go to sleep in the basket. I've been convinced that this will last all of 10 minutes. But he stays there the whole night, curled up like a hibernating squirrel in an oak tree.

Martin's new teacher, Ms. F, asked us if Martin likes to be in enclosed spaces, if he likes to cuddle up inside blankets and small corners. I hadn't thought about it before. I just figured that was a normal behavior and to some extent it is. Autistics, however, can experience an especially acute need to surround themselves in comfort. Since they struggle with the world's sensory overload, they seek out comforting spaces more often.

Ms. F's question was just one way she showed how perceptive she is about kids like Martin. Although she often said that she didn't know him yet, her questions and comments revealed that she knows what to look for and knows how to interpret his behaviors. I'm excited to send Martin off to spend part of his day with someone who has a real interest and capacity to understand him.

And it might be the case that I appreciate Ms. F's capacity because I have been so lacking lately. Although I've been working hard to get Martin in a class and so happy that it happened, I've actually really struggled in some of my interactions with him lately. We've both been a little cooped up, in the house most of the day now that the weather is cold. Maybe we're both a little stir-crazy and in need of some release. Whatever it is, we've been getting on each other's nerves. I've been cringing every time he gets really loud, attacks his sister, or insists on his 5th bowl of Raisin Bran. I'm sure he's annoyed that I'm glued to a computer, trying to get an article finished before my sabbatical ends. Whatever it is, we both need a little more space and I need a little more patience. Maybe our parallel departures to school in January will give us what we need.

Or maybe we both need to sleep in laundry baskets more often, finding the spaces that make us happy and comfortable. For Martin, that literally is the laundry basket. For me, it's more like a quiet office and a latte.

yeah!

2009-12-17T20:04:00.004-05:00

Today was a big day. My husband and I met with the school district and enrolled Martin in our city's first autism classroom. The details look pretty good. A teacher who seems great so far. Two full-time aids in the classroom. Seven kids total, some who stay in the room all day and others who are mainstreamed for part of their days. The kids eat lunch together and have time for academic activities. They go out into the community once a week. They do yoga every afternoon. We are thrilled.

A few months after Martin's diagnosis, we realized that he needed intensive one-on-one therapy. At that time, such services were not available in our district. We took the Autism Scholarship and used the funds to purchase the one-on-one work that Martin needed. It's how he learned to talk. It was so important to have it at that time.

I think we've stuck with the idea that lots of tutoring was vital because of the impact it had on Martin. We had a great tutor for the better part of a year. Her work brought Martin into the world of language. When she left in August, we figured that what we needed was a new tutor. When things weren't going well at school, we wondered if we had the wrong tutor. We never really asked ourselves if Martin needed something other than a tutor. When things at school finally fell apart, we figured it was because we hadn't gotten the tutor part wrong during his school day, not that he might have been at the wrong school.

It was hard to figure this out even after we brought Martin home. When the new tutor wasn't showing real promise, we assumed once again that it was totally a tutor issue. But I think we're beginning to see that even with the best tutor, Martin would get bored after awhile. He's not interested in one-on-one work for hours on end. He wants to be with people. He wants to play more of a role in determining the course of his day.

I think that it took finding a viable classroom environment for us to see that school has more to offer Martin than endless tutoring. At least for right now. Things were very different a year ago. And they might be different a year from now. But on January 4, I get to walk Martin to school, just a few blocks past where his sister goes to the babysitter. I'll send him inside with his backpack, lunch, and yoga mat. And I'll hope for the best.

I know this decision won't make life perfect. And there are some losses. I've enjoyed eating lunch with Martin and seeing him throughout the day over the last two months. But I'm thrilled that there's a place in the system for him. And I'm glad to be relieved of at least some responsibility. So, here's to new things in the new year. Can I take champagne to elementary school?

rare form

2009-12-16T19:34:00.003-05:00

Martin had an interesting day in the language department. Let me give you a few examples:

1) When I helped him change into his pajamas tonight, he referred to his bottom as "the tropical zone."

2) Earlier this evening, he told me he was tired. I asked him if he felt this way because he swam hard at the pool. "No," he said. "I swam softly at the pool."

3) Martin's skin gets very dry in winter. I have to put lotion on him every morning before he gets dressed. He hates the process. He wriggles and yelps. I tell him - every morning - that he needs lotion because his skin is so dry. "No," he cries. "My skin is wet."

The latter two examples make a little sense. Martin has learned certain pairs of opposites: hard and soft, dry and wet. I'm using those words in ways that don't fit how he understands them. The first example is harder to explain. My husband thinks that Martin has extrapolated his understanding of the tropical zone from a video called "Weather for Children." In it, a narrator explains that there is a tropical zone around the equator, at the earth's middle or center. I guess Martin applied this phrase to the middle or center of his own body, his butt. Or that's the best we can make sense of it.

Martin's language use can be awfully funny. For instance, he likes to refer to all sorts of pairings as Mr. and Mrs. When we sat down at a restaurant this evening, he picked up Mr. Salt and Mrs. Pepper. It's so darn cute. But it's also a little sad. Sad because there is so much he still doesn't understand about the world. And sad because there is still so much we don't understand about him.

My great hopes for him include a life in which he has the energy and freedom to make all the funny connections his brain comes up with. That's where art comes from. And humor and scientific breakthroughs (Malcolm Gladwell notwithstanding). But I also hope that Martin has a life full of people who understand him, people he can trust to love him and do their best to get what's going on inside him.

For all the language goofiness today, Martin also displayed some real social skills. He offered several "pleases" and "thank yous" to the pizza waitress. When asked if he wanted a gummy bear, he politely answered that he'd rather have a gummy worm. I'm just glad the waitress didn't ask him about his tropical zone.

dealing

2009-12-14T19:32:00.005-05:00

There are days when your kids holler through most of dinner. And there are days when you get poop on your sleeve. And there are days when you're sure your kid exchanged his soul with some sort of cartoon devil character. And then there are days when all three of those things happen within about 90 minutes.

Of course, every parent goes through trials of patience. I'm sure more than half the stuff Martin pulled this evening had to do with being five as opposed to anything else. But even if his autism doesn't prompt bad behavior, it certainly makes dealing with it more difficult. He is still learning what consequences are. Sometimes, he gets it right. When he takes his full plate out to the kitchen, we hear him say, "If you do not eat your dinner, then you get no snack later." He's right about that.

But at other moments, crucial disciplinary moments when he has - perhaps - just hit someone in the eye, he doesn't seem to get it. Tonight, he hit my eye while horsing around. When I said "ouch" and grabbed at my face, Martin simply laughed. When my husband gave him a timeout for his insensitivity, Martin seemed both annoyed and oblivious to the reason he was punished, despite my husband's clear and brief explanation. Other times, Martin simply mixes the consequences up. Frustrated about something, he might say, "If you kick the door, then I get chocolate ice cream." I have no idea what that is supposed to mean.

I can put up with ruined dinners. If I couldn't, I'd have gone to the funny farm about two years ago. And I can deal with poop on my sleeve. I have quite the streamlined laundry station in my basement. And I can handle mischief. But I struggle in a situation where our efforts at discipline fail again and again. And the failure comes not from lack of consistency (although no parents have perfect records) or real effort to guide our child's behavior. But there are just so many moments where Martin has no idea that his actions or words hurt others. He seems completely surprised that at dinnertime - like hundreds of previous dinnertimes - he must wait to eat until we pray and he can't blow out the candles until the meal is over.

I'll take the poop on the sleeve any day over this.

little victories

2009-12-13T15:45:00.004-05:00

The Ohio House of Representatives has voted that insurance companies cannot decline to cover expenses related to autism and diabetes. The bill now heads to the Ohio State Senate. This is great news. If the bill passes, my insurance company and many others will begin to share the burden that the rest of us have already been shouldering, either as parents who pay out-of-pocket for therapies or as state taxpayers who provide funds for the public schools to pick up where the insurance companies have failed to provide. A big thanks to every House member who voted for this bill.

I can tell you the kind of difference this sort of coverage can make for a family. When Martin was first diagnosed, his doctor recommended two speech therapy appointments a week. We took Martin for an initial assessment and a followup appointment. I then called my HR rep at my job to make sure I understood how much of the therapy we would pay for. From reading my benefits booklet, it looked like we would pay a $500 deductible and then another $1000 in coinsurance. At that point, the insurance would kick in to cover 100% of the cost.

I explained my understanding of the policy to the HR rep, who kindly listened to me. But then she interrupted and said, "You're right about the policy for speech therapy in general. But our policy excludes autism. Your claims will be denied." Completely shocked, I asked how this could be. How could speech therapy for a stroke be covered, but not for autism? "It's considered an educational disorder, not a medical or mental disorder." And that was it. Despite paying my hefty monthly premium to cover my family, I was suddenly uncovered.

And speech therapy is really expensive. About $150 an hour. At eight sessions a month, that adds up to more than my mortgage. Some parents in this position do get second mortgages on their homes. For my husband and me, this felt like a ridiculously perilous financial decision, so we looked for other options. We tried the speech clinic operated by the college where I work. Martin was evaluated and put on a waiting list. (The clinic called back last Thursday - more than 2 years after the initial evaluation - to say that Martin was finally at the top of the list.) We then opted for a public school program that provided one speech session a week, along with a special-needs classroom experience. It was OK. It was all we had. We found out about the voucher program about 9 months later and applied right away. It was the only way to get the one-on-one therapy Martin needed without going into staggering debt.

I think about all the families like ours, but those who are even in worse shape. Maybe they've never heard of the voucher program. Maybe they don't know how to get what they need through the public system. Or maybe they're affected by the other half of the bill's content: diabetes. Maybe they can't afford insulin or decent food. Maybe they don't have supportive relationships to help them stay well. In my mind, these are all injustices that we shouldn't live with in a wealthy country. So if you live in Ohio, call your state senator. Or if you know a family with an autistic kid or a diabetic living among them, ask them if they need an advocate. Unless they live in the small number of states who have ensured their coverage, I bet they could use your voice.

reading

2009-12-11T06:27:00.004-05:00

My daughter is sitting on my lap reading a lift-the-flap book about Passover. She asks me to read it: "again, again." She also likes to read these little magazines called Babybug. Her favorite is about birthdays. A little boy receives a birthday card in the mail and says, "Today, I'm three." Sasha thinks it's hilarious. She walks around the house, saying "I'm three, I'm three." If you ask her how old she is, she holds up one finger and says, "Two." She seems to know that she's wrong. She gets a mischievous grin on her face.

As Sasha develops, I see Martin's development in a new light. I remember moments where something seemed odd, like when we were playing with a two-year-old who could tell us how old she was. Martin was also two and looked at us blankly when we asked him the same question. These stares continued after he turned three and we began to try diligently to teach him to say his age. He never learned until he was four, once we made a set of flashcards about saying your age. Then he got it in 5 minutes.

Martin did so many things normally that it was hard to see what was wrong. Like Sasha, he also read books and wanted us to read to him. He was also mischievous. If anything, he seemed smart and a bit quiet. He knew all his letters before he was two. He was reciting simple addition facts at three. He just talked a little funny.

Sometimes I feel like I have to parent in two different modes. A mode for Sasha in her normalcy and a mode for all of Martin's peculiarities. Sometimes I think I don't have the energy for that. But then I'll find them, sitting together, reading a book. I'll realize that they are not entirely different.

giving

2009-12-09T07:21:00.003-05:00

All the children's librarians know Martin by name. This might be because they are great at their jobs and know lots of kids by name. It might also be because Martin is the only five-year-old that insists that books on the presidents include an entry on Grover Cleveland's terms as 22nd and 24th president, as opposed to many books that fail to show his separate terms. He also refuses any book printed before this year, those that came out before we got the 44th president.

Last night I took Martin to the library for another cooking class. It's a little silly since Martin won't taste anything we've made. But he'll read the recipes, measure things, make labels, and watch the other kids work. Last night, we made little mixes to put in jars and give as presents. Cornbread mix and soup mix. The trouble came not when making the gifts, but when we talked about who we might give them to.

Maybe Martin is at that self-centered stage that all kids go through. When asked whose birthday it is on Christmas, Martin says, "mine." (I like to think of this as his first bona fide heresy.) My husband had a birthday a few weeks ago. I asked Martin what present we should get for his dad and Martin said, "Pancakes," which happen to be Martin's, not his dad's, favorite food. So when I asked him who we should give our cornbread and soup gifts to, he said, "me." I tried to explain it, but Martin was no longer paying attention, lost in the Christmas lights of downtown as we made our way home.

Open-ended questions are tough for autistic kids. Usually, they need prompts, such as, "Should we give the cornbread to Pat or Harry?" When I prompted Martin, he replied that we should give the cornbread to Aimee, a woman at church who gave Martin some president dollar coins last week. Four James K. Polks and two Martin VanBurens. I think he'll give the soup to whoever gives him the dollar coins for Grover Cleveland 22 and Grover Cleveland 24.

dinner

2009-12-07T20:57:00.002-05:00

My daughter is 19-months-old. She can say many words, but there are, of course, many more that she can't say yet. So when she wants something, it is often the case that she doesn't know the word for it. Facing the verbal void, she simply makes noise. Usually, this noise is pretty annoying.

Martin, too, struggles to tell us what he wants. Sometimes, he doesn't know the right words. Other times, he can't manage to put them all together in the right way. When he wants something and can't say it, he also simply makes noise. As with his little sister, it's pretty annoying.

I'm more than ready for people in my household to start speaking English. I might sound like an impatient jerk, but how many evenings can you eat dinner, trying to decipher if a grunt means "I'd like a 4th helping of spaghetti" or if the yelp means "Please, God, more peaches"? I'm in the midst of a five-and-a-half-year stretch where meals are more often pain than nourishment.

I know, I know. We don't face half the struggles that some families on the spectrum do. Martin has made a ton of progress. Nevertheless, I'd like to eat dinner in peace some evening. I'd love to sit, eat, and chat with my family. We're nowhere near that beatific vision. Right now, I feel like it'll never come.