Thursday, December 31, 2009

new


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

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

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

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

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

Tuesday, December 29, 2009

back to life


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

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

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

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

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

Thursday, December 24, 2009

merry christmas


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

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

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

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

Tuesday, December 22, 2009

my true love


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

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

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

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

Monday, December 21, 2009

comfort


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

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

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

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

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

Thursday, December 17, 2009

yeah!


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

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

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

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

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

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

Wednesday, December 16, 2009

rare form


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

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

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

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

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

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

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

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

Monday, December 14, 2009

dealing


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

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

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

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

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

Sunday, December 13, 2009

little victories


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

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

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

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

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

Friday, December 11, 2009

reading


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

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

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

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

Wednesday, December 9, 2009

giving


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

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

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

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

Monday, December 7, 2009

dinner


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

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

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

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

Sunday, December 6, 2009

it's not easy


Here's how a person can be sad despite seeing a bunch of happy baby animals. First, take an autistic child to a live nativity program. Second, wait forever in the cookies and cocoa prelude to your tour through old Bethlehem. Third, have the first scene of the program be about old people having a baby. And finally, realize your kid has no clue at all what is going on.

Tonight was a reminder to me about Martin's continued difficulty with new things, not because he's stubborn, but because he's totally confused. The list of crazy things we subjected him to tonight goes on and on: going to church on Sunday night, taking his friend Henry to church, people dressed in bathrobes with towels on their heads, and rules about when you could go in a room and when you should leave. Basically, we tried to get him to do a new thing in a place where he has long-established and pleasurable routines. It's like your spouse looking over at you and saying, "I'm not your partner anymore, but I will repair your refrigerator or sell you insurance." Thanks, but no thanks.

Even more than Martin's troubles, I was saddened by my interactions with Martin's lovely friend, Henry. Henry did nothing but be a normal 6-year-old. He told me about his grandpa's boat, he had questions about leprosy, he commented on the absurdity of people putting big engines in small cars. He answered my question about which was his favorite part of the live nativity. He hypothesized on how the characters put together their costumes. In short, I could have a conversation with him.

When I asked Martin about his favorite part, he said something about train tracks. When Henry tried to point out some Christmas lights to him, Martin could hardly take his directions about which way to look. My kid has such a serious disability. This knowledge crashes in every once in a while, breaking apart all my efforts to make our life something like normal.

Even though it was a hard night for him, Martin seemed to enjoy at least one moment. After our tour was finished, we walked back to visit the baby animals once more. As we headed toward our car, Martin called out in a soft voice, "Good night, animals. Stay in your barn tonight. And I'll see you tomorrow."

Saturday, December 5, 2009

filters


Martin has started paying attention to our conversations. Unlike most parents, who have to start filtering what they say much earlier, we've not needed to worry that Martin will repeat something we wish he wouldn't or that he'd overhear a more mature conversation. For years, Martin has been in the same room with us and has simply tuned out conversations about housecleaning, money, church, whatever.

Recently, we've noticed that Martin is listening and understanding. In one of our countless conversations about what we should do about Martin's schooling, Martin told my husband and I that he would like to go to "his school." We weren't talking to him or asking him what he wanted. But he heard us discussing our various options and piped in with his opinion. Sometimes, he contributes total gibberish. When we talk about going to the grocery store, he might say that's he's going to the store and he'll get a "something of the something." Part of the sentence makes sense, then things break down for him. But he doesn't want to stop talking, so he puts a little flourish on the end, hoping it makes sense.

More often now, we get more sense and less gibberish. This means that my husband and I must start using the filter that other parents have been using for years. And it means we can actually ask Martin complex questions. He clearly has an opinion about going to school.

Like other parents, I get to start discerning between sense and nonsense. It all used to be gibberish. But now it's about 50-50. So Martin has told me he wants to go to school. He also told me that he wants to turn into a rabbit.

Thursday, December 3, 2009

the fish bowl


I love Thursdays at 3 o'clock. No matter what is going on at school or homeschool, with good tutors or bad, Martin goes to see Miss Beth, his speech therapist. I like these times because I get to watch a professional in action. I get to see how someone who knows what they are doing works with Martin.

The set-up is very strange. We pass through a long corridor of exercise bikes to get to the therapy room. (The facility also does physical and occupational therapy.) I can watch the speech session through one-way glass, like I'm identifying a perp on Law and Order. I get to listen to Beth and Martin through a pair of headphones left over from the "We are the World" recording session in 1985. Despite the goofy circumstances, I learn a lot from watching the two of them work.

When Martin started with Beth just after he turned 4, he was so verbally unresponsive that she could hardly test him in order to make an official assessment. Today, he took directions from her in order to make a complex coloring project. He answered her questions about the Dick and Jane books they read together. He played a game where they took turns picking up a card with directions. Beth had to take her shoes off and then put them on. Martin's card directed him to name his favorite foods. And he did.

At the end of the session, Beth described basic objects to Martin to see if he could guess what they were. "It's a vehicle and has doors and you start it with a key," she said. "An automobile," Martin yelled. Then Beth asked Martin to do a description. You could see that he had no idea what to do and was trying to copy what Beth had just done. And it hit me again - as it hits me at least 5 times a week - that Martin learns absolutely no language naturally. Despite all his progress, he still learns language by reading it or by having people teach it to him. He simply cannot pick it up like the rest of us. I forget this all the time because there is so much he absorbs after the slightest contact. He knows the books of the Old Testament in order after just a few times trying it. He has whole books memorized about the weather. But he can't figure out how to describe a shoe, even if someone is modeling descriptions for him.

I sometimes wish that everyone could look in the little fish bowl of speech therapy. I want them to see what Martin is capable of and what it takes to get him there. I also wish I could let myself off the hook after looking in that little fish bowl. I'm an historian of the 19th century, not a speech therapist or special-ed teacher or professional tutor. It's OK that Beth is better at this work than I am, even if I'm Martin's mom.

Tuesday, December 1, 2009

games


Martin and I are creating a board game. It's called The Presidents Game. Martin typically has a hard time with games. It isn't easy for him to understand complex directions. He doesn't like to take turns. He has no concept of "winning" or "losing." So board games don't make sense to him. But we try them nevertheless because they are good for him. They challenge him to take direction and take turns. So tonight we tried to make a game that he would really like.

I found an old board game called The Six Million Dollar Man Game. It's one of Milton Bradley's worst. Players move around a board marked by spots with statements like "Use Bionic Arm" and "Avert Nuclear Submarine Disaster." So Martin cut out presidents and glued them to various spots on the board. I devised a game plan. And my husband invented and printed out presidential trivia cards to use in the game. Players will roll a die and move around the board from George Washington to Barack Obama. Throughout the game they will pick up cards and answer questions such as "Which President was in the White House when the US entered World War I?" and "Who is the only President who never married?" Players can move ahead if they answer these questions. They must move back if they can't identify the Presidential pictures. I find the board section covering the 1840s and 1850s particularly harrowing.

Martin did all of the cutting and gluing for the new game board, but when we were ready to play he decided to march around the room singing the names of all the presidents. This kind of thing happens a lot. I work on a project I'm sure he'll love and he walks away. I try not to get frustrated. I'm thrilled he did all of the cutting and pasting work. He might be willing to play the game tomorrow. But I kind of wish he would have played it tonight. Alas, I have no bionic arm I can use to enforce such wishes.

Monday, November 30, 2009

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.

Sunday, November 29, 2009

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.

Monday, November 23, 2009

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?

Sunday, November 22, 2009

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.

Friday, November 20, 2009

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.

Thursday, November 19, 2009

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.

Tuesday, November 17, 2009

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!

Monday, November 16, 2009

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."

Friday, November 13, 2009

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!

Thursday, November 12, 2009

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.

Wednesday, November 11, 2009

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.

Tuesday, November 10, 2009

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.

Thursday, November 5, 2009

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.

Tuesday, November 3, 2009

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.

Monday, November 2, 2009

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.

Saturday, October 31, 2009

fall days





































I thought that pictures might convey the spirit of the past two days better than my words can. Our big house switch was framed by a lovely evening at the park where Martin joined some kids in a plan involving lots of leaves. Today's highlights were a Halloween party followed by trick-or-treating. No flashcards necessary.

Of course, Martin dressed as the 16th president.





























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Friday, October 30, 2009

people

Last night, I stood in the kids' room, holding a sleepy Sasha on my shoulder, thinking about all the stuff I had to do before the big room switch on Saturday. My eyes came to rest on the crib and then the quilted wall hanging above it. Log cabin pattern. Bright blues and yellows. Seeing it made me start to cry.

The wall hanging was a gift to us from our church in North Carolina on the occasion of Martin's birth. This was a little church and only recently started. Babies were a big deal. In fact, Martin was only the second baby born into the community. The first had arrived just six weeks earlier. For that little church, having babies seemed like another thing that made us a real community. It demanded the delivery of casseroles to sleepy parents. It required a nursery with toys and church members to hold babies so mothers could get a moment's peace.

That wall hanging, though, reminds me that this little church community was already the real deal to me. Martin just got subsumed into it. My husband and I ate an impromptu dinner with some of those church folks almost every Friday night for several years. They were the first people we told when I found out I was pregnant. Martin was born on a Friday afternoon. Church folks were there a few hours later, bearing frozen custard and ready to marvel at the cone-headed little human who had just arrived. Martin went to church when he was two days old.

We left North Carolina so I could finish my Ph.D. and get a job. I like a lot of things about our life here in Wooster. I have a nice job, a home we're happy in, and a good community. But I miss the folks in NC in the moments where Martin's autism hurts the most. They knew him and loved him from the beginning. They were a community willing to try new things, usually shirking formality. Their openness to others proved itself in its gathering of students, people without permanent homes, professors, prison inmates, health care workers, and anybody else that wanted to come by.

I have this feeling that if we still lived there, those folks would not only tolerate Martin's goofiness, they'd see it as a potential gift to the church. They'd figure out a way to use his massive memory or his strange fashion sense as a way to express God's love. And while this would always be unspoken, I think they'd also see Martin's difficulties as a gift to the rest of them. A gift that offered them the chance to reach out to those with problems. A gift that let them interact with yet another strange and beautiful - yet struggling - person on this planet.

Thursday, October 29, 2009

english

Every once in awhile, I look at pictures and videos of Martin from 12 months earlier. When you live with kids, it's so easy to overlook the gradual changes they undergo. While I like to be reminded of what Martin used to look like and funny things he used to do, the photos and videos also become signposts of his development.

I looked at some videos from last October and November. In the videos, he never responds to the questions we pose. He doesn't have a lot of his own words. The clips are full of scripts, memorized lines from books, movies, or games. The videos are a remarkable record of Martin's capacity for memory. At the same, I wonder how we ever got through a regular day with a kid who communicated to us only in lines from other realities. How did we eat dinner together? How did we get him to take a bath? Did he know that we love him?

Communicating with Martin still has its frustrations. He's much more willful and likely to say "no" now that he understands the things we ask him to do. He's able to tell us what he wants, as displayed in statements like, "First, ice cream, then cucumbers" or "You can give me a cookie if you like." But I'll take this over what we struggled with last year. Until about December of last year, we could never count on Martin understanding what we said. And we certainly never knew what was going on his mind.

Sometimes, we joke that Martin is not a native speaker of English. While there are problems with that statement, there is truth to it as well. How weird to be in a situation where it feels like you and your child don't speak the same language. At least it's getting better.

Wednesday, October 28, 2009

moving on

As part of the process of moving pretty much everything in the house around, we worked on the basement yesterday. When we moved here, the basement had a great big room, a room that we needed to accommodate my husband's work from home. But the big room was kinda scary. Old brick and wood walls with a 10-year-old paint job. Concrete floor. No lighting. Pipes overhead. We've done a few things to spruce it up so far, but not the thing it really needed, which is a major paint job.

Because we're moving the kids into a bedroom that can fit only their beds and their clothes, we're trying to make the basement into an office and a playroom. Yesterday, we got up at 6 and primed the two brick walls. It took a gallon and a half of primer. After the kids went to sleep last night, we painted the other two walls a creamy color. We'll do the same to the brick walls in the next day or so. We're also cleaning things up, moving toys, hanging up some art to make it seem like a happy place.

Yesterday, Martin woke up just as we were finished with our morning painting. He wanted to help. When we told him we were done, he happily moved on to toast for breakfast. Throughout the day, he showed few signs that the impending change – which I’ve told him about – stresses him at all. He worked well with his tutor. He even interacted with a potential tutor we interviewed. With the promise of a reward, he tried on part of his Halloween costume (an Abe Lincoln coat) and practiced trick-or-treating. We went out for ice cream and he was perfectly pleasant to the cashier and gave his leftover cone to Sasha.

However we manage home schooling, I’m committed to doing it in a way that doesn’t put more stress on Martin, my husband, or me. Martin will be happier and we’ll be happier. None of us is the kind that takes stress well. We wear it on our sleeves, acting rather irritable. So if I ever sound like were stressing over this new process, tell me. Tell me to cut it out, to lay off, or to have a glass of wine. It’s OK so far and I’m gonna do my best to keep it that way.

Monday, October 26, 2009

in motion

We've made the decision and Martin is coming home. His tutor got another job. It's difficult to imagine introducing another tutor to Martin and his school. School at home seems to take the pressure off all of us, especially Martin. So we're in a big transition here. It's the last week of school and we have lots of prep for beginning home-school next week.

The biggest changes are physical. We have to accommodate a home-school space in our house. The current plan involves making the school room in what is now my bedroom. My husband and I will move downstairs to the kids' room. They move into the guest room. I'm not sure where the guests will go. Maybe my friend's B&B down the street? The big switcheroo will happen this Saturday. You're all invited. I'm making sour cream coffeecake.

The other big challenge is curriculum. My husband plans to do an hour of academic work with Martin. We're counting on a new tutor to do about 4 hours of autism therapy, mixed in with some academic work and social skills games. I'm in charge of some music, inviting friends over to play, and physical activity. This is the initial plan. But we've learned that planning can get you only so far. It might look totally different by Christmas. Martin might be splitting his time between disco lessons, the study of ancient Egypt, and fencing.

While the whole thing is a little daunting, I'm more relieved than anything. We've been trying so hard to make school a good place for Martin, his teachers, and his classmates. While it might have gotten better if we gave it two or three more months, it's hard to put everyone through it.

We don't know what were in for. We have some friends that home-school. I've read Mitchell Stevens' wonderful sociological study, Kingdom of Children, on homeschooling families and their various politics. But I know nothing about the day-to-day experience. I guess that's not such a big deal because I didn't know what getting married would be like or what having a baby would entail. Those things have worked out OK. By that reasoning, though, I could end up on a spaceship with aliens tomorrow because, hey, it might be interesting.

Sunday, October 25, 2009

fun or not fun

Traveling with an autistic child is always a gamble. The old standbys (ie. the grandparents' houses) usually work out pretty well. But even trips to the most familiar places sometimes involve massive meltdowns. New destinations are even more dicey. We can head for a zoo full of animals while promising stops for ice cream along the way. Sometimes it will work and sometimes it won't. Every trip involves careful calculation and management. Just how much change can Martin manage, if not enjoy, on any given day?

I just returned from a short visit to see Martin's grandparents, along with lots of our Pennsylvania relatives who had gathered at their house. Martin had a bunch of second-cousins to play with. His enjoyment breakdown went this way: 25% of the time thoroughly enjoyed, 15% of the time out-of-control with frustration and anger, and the remaining 60% somewhere in the middle. Seeing him laugh and have fun as he and his cousins tried to break into a gumball machine was a real treat. He was joining kids he doesn't know very well in a new adventure. But balancing moments like that with Martin's breakdowns over a lost presidential flash card and his inability to sit down and eat a meal with everyone made the trip a little hard for me to take.

I always imagined I'd take my children on fun little adventures, but we haven't gone camping in two years. We haven't taken Martin along when we've tried anything outside the circuit of relatives and close friends' houses. Martin and my husband stayed home last December when we performed my grandmother's funeral mass and burial service. We're not sure we'll be able to attend a bi-annual reunion with graduate school friends and their families. To make these sorts of trips means exposing ourselves (and our friends and family) to the possibility that Martin will be miserable and will make the rest of us miserable too. But not going comes at the cost of not finding out the new things Martin can do as he grows and develops. It's a tough situation. And the stakes always feel high. Who wants to travel a long way, spend money, and hope for a little relaxation with the underlying fear that you have about only about a 50% chance of having a good time?

Martin had a pretty good time this weekend. He'll remember the gumball machine. He'll talk about his second-cousins over the coming weeks. He always seems to forget the tantrums. It's a little harder for me to forget the unpleasant moments. While Martin had fun, I had fun and not fun.

Thursday, October 22, 2009

details

Last night, Martin decided to play with my hair. He pulled it up, messed with it, wrapped it around my face. After concentrating on placing a few strands in the right place, he looked at me and said, "Now, you are George Washington." I initially interpreted this statement as one more dose of Martin nonsense. Then I realized that he was trying to get my hair to look like Washington's hairdo on a particular set of flashcards. I played dumb and asked him to keep going. He moved my hair around a bit and said, "Now you are John Adams."

Over the course of 15 minutes, he moved my hair around in the style of the 44 presidents. Some of the highlights included Andrew Jackson's severe updo, Rutherford Hayes' beard, and Bill Clinton's nearly feathered look. The best moment was the transition to Woodrow Wilson. "One moment, Mama, I need to get something," he said. Martin ran to his dress-up box and returned with a pair of sunglasses. He placed them on my face. He looked at me, puzzled, something still wasn't right. He put his hands on the side of his face, squished his cheeks, and pressed his lips together. "Mama, just go like this." I followed his instructions. Then Martin quietly moved on to Warren G. Harding.

If I take the time to look, I often find patterns and order in Martin's seemingly random actions and words. Why does he want 6 pieces of pepperoni? Because last time he had 6 and he remembers it quite specifically. Why does he refuse to take turns playing the autoharp with other kids in Sunday school? Because he remembers the order they went in the week before and this week's is different.

Maybe I'm strange for letting all of these details slip by, rather than tucking them away in my brain. Or maybe Martin and I are just different from each other and neither of us has to considered all that strange.

Wednesday, October 21, 2009

stand and deliver

Every once in awhile, a person's completely reasonable and innocent comment about something else altogether brings Martin's autism into dramatic relief. Take for instance a conversation I heard about new folks in our neighborhood. Someone mentioned a new resident, very studious, living in a nearby tiny house. She related her efforts to say hello and be welcoming to the new neighbor, along with the strange rebuffs she received. "She just looks away from us and walks on. It's so weird." She's right. It is kinda weird. Maybe even rude. But the first thing I thought was that the new neighbor might be on the spectrum. Maybe it's really hard for her to look into the eyes of a stranger and say hello.

I don't mean to read everything through the lens of my kid's condition. The new neighbor might just be rude or weird or both. But that relatively innocent conversation - in which the speaker expressed a natural reaction to the situation - reminded me of how fraught new interactions can be. I am so used to all of Martin's strange habits. Once you get used to them, they become quite charming. But there's a world full of people who Martin has yet to meet. And most of them will expect the standard social graces. It's not clear right now that Martin will be able to deliver.

Tuesday, October 20, 2009

school - again

I'm really good at school, but I think it is stupid. The older I get and the more kinds of people I know, I've cultivated an increasingly skeptical attitude toward K-12 education. I just can't believe we push so many people through institutions so unsuited to them. I'm continually amazed that everyone is judged on the same scale: can your kindergartner skip, can your third grader read chapter books, does your middle-schooler understand Fahrenheit 451? I'm not sure Martin will ever skip, but I think he'll be into light sci-fi novels in the next 2 years.

I've known some very cool homeschooled kids. My friend, Helen, just graduated from Temple with a degree in dance. Her brother, Jon, plays baseball in college. My friend, Luke, is in his last year of homeschooling and plays in a nice little rock band. They are nice, interesting, well-adjusted, and talented kids. None of them exhibit the stereotypes about homeschooling. They are far from socially inept or freakishy focused on particular topics.

But when I began to think about why people worry about homeschooling, I realize that their fears are about things with which most autistics struggle. Martin is somewhat socially inept. He is definitely freakishly focused on things (right now it's state birds). So I'm wondering if homeschooling would be the worst thing we could do - because it would cater to these propensities - or if it would be the absolute best thing we could do - because we could acknowledge them and address them with a personalized curriculum.

These reflections stem from my deep concern that Martin (at least now and for who knows how long) will not fit in at school. That he will never be a natural follower of classroom routines. That he will never recognize that there are social expectations he is supposed to fulfil.

Maybe it's time to come home.