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.