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.

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.

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.

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."

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.

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.

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.