two super Cs

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

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

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!

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

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

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

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

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

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

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...

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

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

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

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?

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.