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.

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.

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.

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.

home

About two or three times a year, I leave Wooster and travel to academic conferences. I just returned from one last night. These trips - while usually fun and intellectually stimulating - have challenged me in two particular ways. First, until recently I've had difficulty knowing what to say about Martin to my colleagues. And second, again until recently, Martin never showed that he missed me when I was gone.

I'm not sure why, but I'm finding it a lot easier to talk about Martin's situation. I think I used to be afraid that revealing his autism to others would make them uncomfortable, or that my explanations would be confusing, or that they would feel sorry for either him or me. It's not easy to reveal that your kid has a disability, explain its details, and show that you're OK with it at a conference cocktail hour.

A few things have happened that have made this better for me. I've realized that if I can talk about Martin's autism comfortably, I have a much better chance of making others comfortable when they hear me mention it. I've also gotten better at offering short descriptions of Martin's particular case. Most important, I've figured out that talking honestly about my own life is an invitation to others to do the same. It's a form of resistance to a professional culture that works on us all, one that urges us to present our lives minus their ambiguities and difficulties.

It's also gotten easier for me to travel away from home because Martin has begun to show that he misses me when I'm gone. On Thursday, I told him I was heading for Indianapolis. He told me I should stay in Ohio. While I was gone, he told my husband repeatedly that it was time to go to Indiana. I'm sure I would figure out how to live if Martin showed less affection, but I have to admit that Martin's recent ability to express himself this way has meant a lot to me.

So, it's very good to be back.

niebuhr

Last night I walked from our church fellowship hall, where I had just eaten dinner, across a parking lot to the main church building. Martin had headed over there as soon as he finished his meal. I expected to find him tucked in a corner of his Sunday school room reading Curious George books. Instead, I opened the doors and heard his voice calling out, "6...7...8...9...10. Ready or not, here I come!" There were children zipping everywhere, finding spots to hide. A few seconds later, Martin ran around the corner. "I'm looking for the kids, mama," he yelled. And then he disappeared up a staircase. I couldn't believe it.

Though I usually don't try to understand these things (not because I'm not interested, but because they are mysterious), I really want to know why Martin could play hide-and-seek with a dozen kids last evening when he can't seem to make friends easily in his kindergarten class. He sees those kids every day. They are closer to him in age. They have tons of activities they could do together. Instead, he feels more comfortable roaming the church halls, chasing and being chased, yelling at the top of his lungs.

I often wonder if we're doing the right thing by not pressing Martin too hard to learn classroom routines. Some folks urge us to push in that direction, out of concern for his ability to continue in school. Out of concern that most of us, someday, have to learn to play by the world's rules if we want to find educational accomplishment and a job. But this path is something I've always questioned, even before I had a kid on the spectrum. Having an autistic child brings all of these questions into sharper focus. If we want him to find that sort of success, it will take a lot more work. On the other hand, if we're willing to let him be himself, we have to commit to being there to support him if the world isn't exactly accepting. It's hard to know what to do. But to invoke Niebuhr (and I do this begrudgingly because I think he's wrong, wrong, wrong on so much else), ethics is not figuring out what to do, but figuring out what is going on. That, to me, seems hard enough.

like a what?

I just read a profile in the online version of Beef Magazine (something I never imagined I would do). The article was about an upcoming HBO movie about Temple Grandin, who has been called everything from the "woman who thinks like a cow" and "the most famous autistic on the planet." She did not speak during her preschool years. Most people thought she'd spend her life in an institution. Instead, she took her very peculiar brain (she feels a deep kinship with animals - to the level that she believes that she understands how animals experience the world) and found a way to do what she loves and what she's good at. She revolutionized the American slaughterhouse so animals' final moments are not traumatic. She teaches animal science in a university. She dresses like a cowboy.

I grew up in the 70s, before multicultural curricula and efforts at political correctness made an impact on Indiana elementary schools. I heard the classic story of American life that involved white-haired presidents, machine guns, and paeans to prosperity. It's a different world now, a world where my son might see a fairly mainstream movie about a person who shares in his struggles. It's a world where every Columbus Day brings the streams of public protest about the other side of the story. Martin will sing not only Christmas songs in school choir, but probably a Hanukkah number and maybe something about Chinese New Year.

I'm an adult and I find myself thankful that my experience of difference (having an autistic child) can be part of popular discussion and reflection. How much more important is it for children to see these things and know they are not alone. I'm glad I live in a time where a woman who thinks like a cow garners serious public reflection on her experience. The 1970s might have had some killer polyester and fabulous album cover art, but I'll take today.