too much spice

I've often wondered why certain things end: the novel Infinite Jest, the Clinique bonus bag period, and vacation. I'm back from Thanksgiving vacation and am a little bitter that it is over. There are a couple of good reasons for this feeling. First, we are still struggling to find Martin a tutor with whom we feel comfortable. Second, I visited the public schools today.

Now, let me beg forgiveness for some of the classist remarks you are about to read. Can I offer a treasury of merits that includes lots of service at food pantries, friendships with inmates, and even a year-long stint living with people people transitioning out of homelessness? Believe me, I'm not a total snob and feel completely convicted about my emotional response to the public schools earlier today. But here goes....

Wow, public school is a total assault to the eyes and ears. And I'm not even autistic. Everywhere I looked there was too much stuff: on the walls, on desks and tables. There were unmatching colors. There were mohawks (the hairdos, not the Indians). It was so loud. The cafeteria was like an echo chamber with 100 kids trying to be heard inside it. Even though the school district's new autism classroom instructor seemed terrific and even though the kindergarten teacher seemed perfectly competent, I simply could not imagine putting my sensory-sensitive kid in that loud, garish place. I might as well put him down in the middle of an Egyptian spice market and say, "Here, Martin, why don't you learn some more subtraction."

When I get this kind of feeling, I don't get the fight instinct. I get the flight one. I want to pack my bags for some state, any state that provides something better than this. It doesn't help that a friend sent us a recent op-ed from West Virginia on a similar subject:

http://www.wvgazette.com/Opinion/OpEdCommentaries/200911210272

Unlike us, the family in the article has no voucher option. When the public sector proved unhelpful, they paid out of pocket. Thankfully, we haven't had to do too much of that. But I live with the same anxiety the columnist expresses. You know how much an autistic kid needs and you know how much good it will do - and then you struggle to achieve even a portion of what you dream of. Makes me want to dive into the other worlds that novels present us or a pile of miniature cosmetic goodies. Or at least go back on vacation.

turkey

Martin is having one of the best trips of his life. During a stop in West Virginia, he played with two kids, learned new games, and slept in a bunk bed for the first time. At his grandparents' house in Virginia, he's jumped on the trampoline with cousins, read with his grandmother, and frequented the local children's museum. Despite the lack of schedule, new things to do, and constant stream of people, he's had only one fit. The rest of the time, he's been having fun.

Because Martin is having fun, I can relax. I can rest assured that he's having a good time. And I don't have to deal with the negatives: no tantrums to explain to cousins, no dirty looks from museum parents, no desperate searching for organized activities to fill long days.

Thanksgiving doesn't do much for Martin. He was uninterested in any of the special foods. He ate a piece of bread for Thanksgiving dinner. Because everyone else raved about the turkey and potatoes, Martin said that his bread was delicious. I, however, love Thanksgiving. And this year I got a happy and relaxing one for the first time in years.

frances

Then Frances spread jam on a slice of bread and took a bite.
"She won't try anything new," said Mother to Father.
"She just eats bread and jam."
"How do you know what you'll like
if you won't even try anything?' asked Father.
"Well," said Frances,
"There are many different things to eat,
and they taste many different ways.
But when I have bread and jam
I always know what I am getting, and I am always pleased."

Bread and Jam for Frances (1964)

Martin is obsessed with Bedtime for Frances. Though it could use some creativity in the verb department, it's a nice story. The illustrations are wonderful, done by the same artist who illustrated Little House on the Prairie.

Tonight I tried to get Martin to extend his collection of beloved books. If he loves a story about Frances going to bed, why not a story about Frances eating supper? Of course, the story provided my answer. Martin wants the story of Frances' bedtime because there are so many stories and he knows that he will always like this one. Who knows what might happen in a story about Frances and her supper? Who could say about Dr. Seuss?

At the end of Bread and Jam for Frances, the little badger's parents trick her into eating new food. Something must be different in the world of tiny mammals because I cannot trick Martin into anything. Really, what's wrong with only one or two things for supper? And what's so bad about loving only one book?

lois

Words like "heal" and "cure" spark furious debate in the autism community. Some folks claim that their children have been "cured" by therapies ranging from the physical to the behavioral. Others retort that autism is never cured, but rather is lived with and coped with through various strategies. Some people on the spectrum, particularly folks with Asperger's, say that they wouldn't want a cure even if there was one. The talents and weaknesses that stem from their place on the spectrum are integral parts of who they are. Who would they even be if they got cured?

I don't really talk about autism cures. When Jenny McCarthy comes up in conversation I stare down as if there is something really compelling on my plate or in my glass. I just don't want to think about. Even more, I don't want to argue about it.

But I did have to think about it during the last few weeks. My pastor has preached a series of sermons on episodes of healing in the gospel accounts. This morning, the series ended with an opportunity for people to receive anointing and ask for prayers of healing. I don't want Martin to be someone different than he is. But at the same time, I do wish he did not have to struggle to communicate. I wish he never had to be confused about what we say or expect for him. I wish it wasn't hard for him to navigate a school day. I wish he knew what to say each time another child asks him to play.

After the service, I went over to talk to my friend, Lois, who is fighting a very serious battle with cancer. In the three years I've known her, I have witnessed her incredibly generous and hopeful approach to people and life. Throughout her treatments, she has evinced admirable strength and courage. She was anointed today. Martin was not. I told her that I wasn't sure if it would be the right thing, if a cure for autism was the thing to hope for. She looked at me and said, "But wouldn't it be awesome for God to do it, to take away his difficulties?"

When I think about it, many of Martin's difficulties have subsided significantly in the last year and a half. He is happier now. He is frustrated less often. Tonight, he played with a house full of kids and had a wonderful time. That didn't happen two years ago. I've attributed this change to the hard work of therapists and teachers, to the countless hours of one-on-one time that it takes to make a difference in autistic kids' lives. But I shouldn't shut out the possibility that there has been something called healing as well. I've always thought of the work as mine and my husband's and Martin's teachers. But maybe God is working in this as well.

climb every mountain

I don't get to accompany Martin to speech therapy very often. Last school year, his tutor took him. This school year has been crazier. My husband and I have swapped off taking him on Thursday afternoons.

When Martin was first evaluated by his speech therapist - over 2 years ago - his speech was so limited that she could not even test him. She tried to evaluate him with a benchmark test for 3-year-olds and could not get him to respond to any parts of it. Those were some of our many days filled with bad test scores. IQ - 60. Fine motor skills - 2 years behind. Etc.

Martin loves to go to speech. We sign in at the front counter and he waits there for the therapist, refusing to take a seat like everyone else. The receptionists always ask him how it's going and what he's doing. "I'm waiting for Miss Beth," he replies. When he sees her, he runs down the hall and into the therapy room. I wait outside, although I can watch through a glass wall and listen with earbuds.

Yesterday, Miss Beth was trying to get Martin to recount a storybook in his own words. He did pretty well. She also tried to get him to describe objects on a card, which was harder because he simply wanted to name the object. Finally, she wanted him to draw something he did that day. She drew a picture of herself eating spaghetti as an example. Martin drew a picture of himself on a mountain and swimming in the ocean. We live in Ohio, so you decide whether not that picture was accurate.

Back in the day, Martin used to scream during speech therapy. He refused to take direction. It took months of repeated effort to help him realize that the activities could be fun. And now he's telling stories. And like Lake Wobegon, they might be true or not true. The point is, though, that he's willing to tell us something. I'm still getting used to the fact that Martin can sometimes tell me the things on his mind.

growth

Day three with the new tutor didn't start out very well. In his best imitation of an irate teenager or Civil Rights protester, Martin refused every proposed activity. He yelled. He fell to the floor. He ran away. He cried. It was not a good morning for our neophyte tutor. We supplied encouraging words, assuring her that Martin struggles against anything (or anyone) new. We told her to try the activities that already interested him rather than pushing new ones. It was not a good morning.

At lunchtime, Martin somehow realized that the world and his new tutor were not against him. The two of them went to the library for awhile. When they returned, they did some activities together. When it was time for her to go, Martin told her that she could take her coat off and stay longer. Three hours earlier he was yelling at her at the top of his lungs. He almost made the poor girl cry. And now, all sugar. I cannot figure it out.

Every day, I have the urge to cave. I just want to give in to Martin's demands. Not only because I know he's having a hard time, but also because it would make my life easier. It's easier to avoid new things than to go through the elaborate orchestration of making a new thing Martin-friendly. Even so, I have to do it. Martin simply has to get used to his new tutor. He simply must do new activities with her. There will be no growth otherwise.

psalms for autumn

On the drive home from the library tonight Martin sang another one of his wacky psalms. To make even a bit of sense of it, you must know that he had just picked up a banana at a kid's cooking class at the library. So here goes:

Raise up your hands to the green light,
Raise up your hands to the yellow light,
Raise up your hands to the red light.
I am waving the banana,
And it is Martin's banana,
And all the Christmas lights are shining,
Christmas is so huge,
And I am so huge.

This song is mostly nonsense, unfiltered response to the traffic signal, some food, and the newly installed Christmas lights all over downtown Wooster. At the same time, it is a sign of Martin's recent verbal leap. For instance, yesterday he disobeyed his new tutor and ran away from her in the college parking lot. When I asked him about it, I received this shockingly long reply that basically cohered with reality:

"Um, I was just holding Miss Jamie's hand and then I was not holding Miss Jamie's hand and I was running out to the street and I was not listening and then Miss Jamie she just grabbed my hand and I was not listening and I will get a time out."

This is a child who, a year ago, we were trying to get to answer yes or no questions 50% of the time we asked them. This is a kid who we were drilling every day with the hope that he'd take more than one turn in a conversation. We were yearning for something, anything sensible to escape his lips. And now we're getting paragraphs. They might be full of run-on sentences and repetitive, but so are many of my students' papers.

I'm just so amazed by it all. So amazed that we made it through the library cooking class, even if he refused to eat the food he helped make. So amazed that he knows what Christmas is after several years of the day being nothing but a nuisance to him because it changes a typical daily schedule. So amazed that he's reasonably happy and making progress despite all the ups and downs we've had with schooling and tutors this fall. You are huge, Martin!

riffing

Last night, Martin asked me to play "Old Testament Go Fish." Having never heard of this game, I asked Martin how to play it. He preceded to deal out a set of laminated flashcards, each with the name and a symbol for a book of the Hebrew Bible. He directed me to pick up my "hand" of cards. Then he looked at his hand, got a big smile, and asked me if I had Zechariah. Since Martin, like so many kids, can't keep his hand to himself, I could easily see that Zechariah was the top card in his hand. So I told him, "No, I don't have Zechariah." "GO FISH!" he yelled. Since there was no stack of leftover cards in the middle, I wasn't sure what to do. Martin showed me by promptly laying down his Zechariah card. He then expected me to ask him for a prophet card already in my hand. We continued back and forth until all our cards were in the middle. When the game was over, Martin said, "That was a wonderful Old Testament Go Fish." I nodded in agreement.

I can't tell if Martin simply hasn't learned the rules of play for Go Fish or if he knows them and is riffing on them. I pretty sure I've seen him it play the real game before. That means he adapting the game to a way he wants to play it. And that means he's being a fairly normal kid. I noticed another example of this behavior lately. Martin was holding his little sister's doll, an object she refers to as "baby." When I asked Martin if he had a name for the doll, he said, "Her name is Daby."

While this kind of behavior is standard in typically-developing kids, it's striking and new for Martin. It reveals a flexibility with the world that surprises me. Martin usually lives within a coherent and bounded world, one in which certain things follow upon others, schedules rule, and expectations are high that everything stays on track. Martin has always struggled with the introduction of new things. But lately he's showing signs of willingness.

Two nights ago, I took him to the international students' talent show at the college where I teach. There were dance groups and music performances. One student had some particularly sweet moves and I leaned over to tell my husband that it reminded me of a Michael Jackson number. Martin heard me, looked surprised, and said, "an Andrew Jackson number?" "No, not Andrew Jackson. Michael Jackson," I replied. In the past, Martin would have insisted - to the point of tears - that the student and his dance looked like Andrew Jackson. He would have forced his point that the world was as he wanted it. But the other night, he simply accepted the new idea. "Oh yeah," he said, "Michael Jackson."

too cool for school

Tonight we had a bunch of kids over to celebrate Saint Martin's Day. The holiday is a big deal in parts of Germany. Kids parade with paper lanterns and candles through the streets. There are special songs, often accompanied by accordion. There are wonderful treats called Weckmanner, little sweetened yeast breads shaped like gingerbread men. We had an Americanized version of Saint Martin's Day. We had the parade of lanterns. But party accompaniment came from an I-Pod and treats came in the form of cookies.

After the parade, some of the kids wanted to see Martin's new school room. Soon enough, scads of kids were pulling things off shelves, drawing pictures, and playing with activities in the room. The older ones had all sorts of questions. "Is this where Martin goes to school?" "I think I want to homeschool." A little girl began to cry when her parents' call to go home meant she had to leave the school room. Through all of this, Martin was thrilled to have his school room full of kids. Even though things were a little loud for him, he had a great time. The lanterns, the cookies, and the friends exploring his new space all served to make him feel really good.

And that's good since we were celebrating his saint day. Here's to more parties and friends in our school room! Here's to homeschool in contact with the rest of the world!

in the office

This morning my pediatrician screened our 18-month-old daughter for autism. It's now standard practice to screen children at their 18-month and 2-year doctor visits. The questionnaire asks whether your child makes eye contact with you and if your child can play with toys appropriately as opposed to simply fiddling with them.

No such screening tool was used widely when Martin was coming up. I can't help but wonder what my answers would have been. Thinking back on that time, I remember that Martin could amuse himself for longs periods of time. As a 6-month-old he could play with a piece of paper for half an hour. When he was 18-months old, he built block towers about a dozen pieces high. These were signs, but we had no idea. We thought he was just bookish, which made sense given his parents. His ability to concentrate didn't seem odd as I was simultaneously sitting in a tiny office for hours each day pouring over 19th century New York legislative records. One person's weird is just another person's job, right?

Another aspect of a standard 18-month-old's pediatrician visit is immunizations. No matter how convinced you are that there is no basis for connecting autism to shots, no matter how much you trust the process of peer-reviewed science, it's a big, big deal to think about giving an MMR to your seemingly normal toddler when she has an autistic big brother. I'm fortunate enough to have a doctor who will talk these things out with me. He doesn't believe there is a tie between shots and autism, but he knows the stakes are high for families with a clear genetic predisposition to the spectrum. He also knows that there's little chance that Sasha will get the measles in the next 6 to 12 months. So unlike some mothers who've had doctors scream at them about immunizations, my doctor said, "Let's wait. Let's give it a year until she's a little more grown up. You have to feel good about what you do with your kids." It made me start to cry.

I've cried in that pediatrician's office before. The same doctor diagnosed Martin just over two years ago. But today I cried out of relief. Relief about caring for Sasha and relief about a doctor's solidarity. And more than that, relief that Martin is doing OK despite all the things I didn't know a few years back.

wh

Autistic kids often struggle with "wh" questions. Questions with a who, what, when, where, or why. These kids might stare at you blankly when you ask, "Where are you going?" or "Why are your clothes on backwards?" Even if they can answer such questions, asking them remains difficult. Martin and his tutors do flashcards designed specifically to develop proficiency in answering and asking these "wh" questions. We hold up picture cards and ask questions like, "What is the girl holding?" or "Where is the boy going?" The hope is that Martin - aided by the visual prompt of the card - will answer "A ball" or "To school."

Martin has made progress in answering "wh" questions over the past year. But his ability to ask them has increased dramatically only in the last few weeks. He asks us about where things are, what time it is, or when we will go to the library. It's really exciting. He has not, however, entered the final "wh" frontier: why questions.

I've known kids, ranging in age from three to five, who ask why about everything so much and with such intensity that my normally pacifistic personality morphs to the point I'm ready to clobber someone. You know the kid, right? "Why are you going out the door? Why is the sky blue? Why do you need a water heater and an ice cube maker? Why are you drinking that bottle of Scotch?" After the twentieth why question, you're ready to do anything to make it stop.

Martin has never asked why. Although he expresses frustration that church happens on Sunday but not Saturday, he never asks why that is. Even though he's sad when we tell him that we can't go to the park on a particular evening, he's never asked why not. Since the word "why" hardly exists for him, it's as though his brain can't accommodate the concept of questioning. It's so weird. And it makes me believe, once again, that Wittgenstein was right.

Nevertheless, I predict we'll hear a why question by Christmas. I'll let you know.

cava bien

Sometimes Martin makes verbal leaps in a matter of days. I left on Friday for a conference in Montreal. I arrived home this evening and encountered sentences such as, "You are home from Canada," "We are having pancakes for supper," and "I really just missed you." It was like talking to a different human being than the one I left a few days ago.

Homeschool stuff went pretty well while I was gone, especially since my husband decided to cancel circle time. It was proving to be a point of contention. So now we're just presenting Martin with a lot of potential activities and letting him decide. The kid stays busy all day if you show him interesting things he can do and give him ample breaks for being with others.

Martin's progress has me dreaming big: imagining camping trips to New England and Quebec, bike riding around Montreal, and pathetic efforts at speaking French. I'm starting to wonder if Martin might be ready for a new adventure, one where we consider his interests and needs, but also ask him to try new things. If we took time at playgrounds and diners with good french fries, maybe he'd a hike through the old town streets. Or maybe I'm crazy to think it and am on the verge of stranding myself and my family in Francophone North America in utter misery. But we can't know until we try.

It's always good to come home from a trip. But it's even better to arrive when your child knows that you have been gone and lets you know that he's glad you're home.

time

As parents, homeschool presents us with the same behaviors that Martin's teachers struggled with. Namely, Martin puts up massive resistance when asked to do something he doesn't want to do. We've tried lots of different disciplines at home and his teachers have tried at school. Nevertheless, getting Martin to do what you want or need him to do often results in a meltdown or a showdown.

So our homeschool days so far have a predictable rhythm. When we present Martin with work he likes to do, he happily complies. He has spent a great deal of time the last few days telling time, reading his favorite books, and working through his favorite flashcards. He does mapwork that's familiar to him over and over. But when we stretch him - present him with unfamiliar work - he resists. He avoided the sheet of addition facts and a U.S. map for matching state capitals. He yelled when I tried to have "gym" using some flashcards with a few child-friendly yoga positions.

So I understand why his teachers struggled. And were trying to figure out how to help Martin try new things. At the same time, we're trying to establish a homeschool routine that doesn't wreck havoc on our ability to do our own work. Like so many new things with Martin, I wish we were already a month into it.

so far

Well, Martin seems to like homeschool. That doesn't mean that he hasn't thrown fits. Nor does it mean that he always does the activities we have planned. By and large, though, he likes working in the homeschool room. He enjoys a lot of the activities. And he spends most of his free time during the day (about an hour in the morning before the tutor arrives and another hour after she leaves) doing more activities in the room. During one of those sessions, he matched pieces of paper with the names of state birds to each of their respective states on a map. He did it from memory. I had no idea how many states picked the Northern Cardinal. No state picked the peacock. Bummer.

The homeschool transition is definitely more difficult for me and my husband. We're trying to come up with activities for the next day. Late last night I found myself searching Google Images for line drawings of pumpkins. Another problem is that Martin likes to take little breaks in my office, usually right in the middle of an important sentence I was trying to get out of my brain and into a Microsoft Word document. But these things seem minor compared to worrying about his classroom status everyday. Or paying tuition. MArtin will never get kicked out of Quinby Avenue School and he goes for free.

My guess is that Martin will be totally acclimated to homeschool in about two weeks. The more pressing question is whether or not we will have found him a new tutor by that time. No matter what my husband and I do to make homeschool a success, we still need a tutor to do language and social skills work with Martin about four hours a day. Anybody up for working with a quirky 5-year-old? The job comes with lots of fringe benefits, namely exposure to obscure information. There's so much to know about the Western Meadowlark.

new

The room is ready. At least today's schedule is made. Everyday there will be some circle time, periods for choosing independent work, and autism activities. There are also special activities thrown in for variety. Today there will be time for painting fall things. We're also having a leaf scavenger hunt. We have a poem of the week.

Martin is so excited about the school room. We tried to make it look as much as possible like his room at Montessori. We have books and activities (our own, the tutor's, and the public library's) scattered on shelves around the room. I might even break down and get a hermit crab for elementary school verisimilitude.

This week, we're going to concentrate on establishing a school routine at our house. Next week, we'll branch out. I'm hoping to take Martin to a signing/signing choir for homeschoolers. We'll invite over some children to play. We'll have "gym" at the pool or at the college bowling alley.

So wish us luck today. Well, not just us. Wish the whole world luck today.