Monday, September 20, 2010

christmas colors


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.


Monday, September 13, 2010

try, try again


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.

Saturday, September 11, 2010

jekyll and hyde


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.

Saturday, September 4, 2010

green day


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?

Tuesday, August 31, 2010

ug

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.


Sunday, August 29, 2010

wish


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.

Wednesday, August 25, 2010

partners


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.

Sunday, August 22, 2010

first day


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.

Sunday, August 8, 2010

yo, teach


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.

Sunday, August 1, 2010

back home again


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.

Wednesday, July 21, 2010

i hate wii


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.

Saturday, July 17, 2010

white house briefing


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.

Wednesday, July 14, 2010

why is summer hard?


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.

Sunday, July 11, 2010

the final countdown




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.

Monday, June 21, 2010

a first


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.

Friday, June 18, 2010

week 2


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.

Sunday, June 13, 2010

summer


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.

Thursday, June 3, 2010

how it goes


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.

Thursday, May 27, 2010

predictions


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.

Tuesday, May 25, 2010

dish


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?

Sunday, May 23, 2010

what i expected


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.

Monday, May 17, 2010

road trip


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.

Wednesday, May 12, 2010

i...e...p


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.

Monday, May 10, 2010

report




































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!

Friday, May 7, 2010

a party


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.

Tuesday, May 4, 2010

best in show


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."

Monday, May 3, 2010

just an ol' fashioned love song


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.

Friday, April 30, 2010

let's go



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.

Tuesday, April 27, 2010

new song


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 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.

Monday, April 26, 2010

really?


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?

Saturday, April 24, 2010

stickers


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!

Thursday, April 22, 2010

fishing


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.

Monday, April 19, 2010

leap


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.

Wednesday, April 14, 2010

cars


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.

Monday, April 12, 2010

long time


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.

Tuesday, April 6, 2010

wrong


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.

Monday, April 5, 2010

martin's top ten easter moments



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.

Friday, April 2, 2010

GF


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.

Wednesday, March 31, 2010

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?

Monday, March 29, 2010

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?

Friday, March 26, 2010

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.

Wednesday, March 24, 2010

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.