why do we think these things?

While I prefer to get my information from books, I sometimes go to Google in search of autism factoids. In desperation, I have looked up "autism and potty training" and "autism and Halloween." (These were, in the order listed, horrifying and helpful searches. The former provided me with dozens of stories of autistic children wearing diapers forever and the latter gave me tips that helped Martin make it through trick-or-treating, including don't make your autistic kid wear a costume with a big headpiece and practice the whole candy-getting ritual in the hallways of your home for at least two weeks prior to the big night.)

Lately, I've been thinking a lot about autism and affection. I have been prompted in this by Martin's ability and willingness to say affectionate things. He's always been a hugger and kisser, but he struggles to express himself verbally. In recent weeks, however, he's had some speech breakthroughs. As I noted in a recent post, he told me that I should not go away for the weekend. When I talked to him on the phone yesterday, he called me "middle-sized bear," a reference to the Three Little Bears and a term he likes to use before giving hugs. Tonight, as I put him to bed, I told him that I had taken a ride in a boat in Pennsylvania. Martin replied, "I want to go on a boat in Pennsylvania with you."

Books on autism often mention affection. Many checklists of autism symptoms include statements about children shying away from affectionate gestures and refusing to look people in the eye. There is a common perception that autistics aren't affectionate. If you go to Google, however, you find sites in which parents of autistics try desperately to dispel this perception as an unhelpful, if not destructive myth. Myriad websites detail parents' stories of kids who hug, kiss, say "I love you," and express sadness when people they love are not around.

It is certainly my experience that Martin has always been physically affectionate, but that he needed lots of verbal development catch-up before he could put his feelings into words. I've always thought Martin was unusual in this, but maybe these parent testimonies tell me something else? Maybe the "autistics aren't affectionate" conclusion ranks up there with other common cultural holdings that are sometimes true and sometimes not. Like alcoholics can't hold down a job or feminists hate men or Saturday Night Live is funny.

This makes me want to think hard about the things we conclude about groups of people. How does it show us what we value? Why is it so bad if some people can't hold down a job or if others are through with men? Why is someone's ability to express affection more important than whether or not they feel affection and love from others?

1600 Pennsylvania Avenue

Even though my Amish heritage has given me a cautionary approach to technology, I have to wonder how people parented autistic children before YouTube. I know most of the videos are inane. Many mark an aesthetic low point for our culture. But it is a wonderful resource for the endless series of obsessions that autistics have. Martin's love of the presidents involves not just flashcards, a placemat, a book, and paper cutouts, but a couple of videos. His recent favorites include a 7-minute tour of the White House exterior and grounds and a 4-minute montage of the 44 presidents morphing from one face into the next. (The Grover Cleveland-William McKinley transition is a little unsettling, especially because the videomaker has "Bolero" for background music.) Martin finds these videos very soothing. After a day at school, he'd like nothing better than to watch what he calls "The White House Story," to hear - once again - the narrator describe the Truman Balcony and the Bill Clinton putting green.

It's easy for me to look at Martin as he watches these videos and wonder what is going on in his little world and how he will ever relate to the rest of us. But then I have to remember that the little guy just finished a 5-hour day of school, which includes social situations that are particularly challenging for him. I guess these little videos are to Martin what a glass of wine after work or a little backrub after a run are to the rest of us. If I really think about his whole life, rather than focus on his "presidential moments," I realize that he doesn't spend most of his away from the rest of us. He spends most of his time relating to us.

This was confirmed for me tonight when I put Martin to bed. I told him that I will be going away for a few days (I'm off to the anti-technology zone of a college roommate reunion in the Poconos. No blogging, but lots of kayaking.) I've told Martin about my travels before. He has never really registered them. But tonight he said, "Mama, you don't have to go away. You can stay here. Don't go." So not only is he in the real world, he's trying to get me to play my proper role in that world. He wants us both to be a part of life at 1045 Quinby Avenue. Take that, James Buchanan.

you've been warned

We might be approaching something we can call "routine." After a summer punctuated by our vacations and the tutor's time off, after four weeks of school that have seen new tutors come and go, we might have a reliable schedule in place. It's no surprise, then, that Martin is having better days. I don't want to jinx it, but he has made it through two school days with only minor incidents. He has been quite friendly and mostly compliant at home. He's even been playing quietly by himself (something he normally loves), rather than engaging in attention-seeking (ie. bad) behaviors. We're nowhere close to Martin going to school unassisted, but we are definitely out of the woods when it comes to potential expulsion. What a relief.

We've known for a long time that Martin struggles in the face of new things. Before his diagnosis, his language delays certainly concerned us, but we were pretty sure things would even out. It was Martin's complete inability to enjoy himself on a terrific summer road trip that made us wonder what the heck was going on. How could he not enjoy a house full of kids his own age? Why did he resist trips to the zoo and the neighborhood pool? Why were his only happy moments when he could play in the waters of Lake Winnipeg, the waves and wind drowning out the rest of us? Now we know. And every time we forget and move forward without plans and try to make Martin adjust to what we want, we all the pay the price.

Will all of you readers out there let me know if you think I'm headed for disaster? If I announce our forthcoming voyage to Zanzibar? If I detail plans to move to the moon? Or if we simply try to take this kid on a vacation?

this little piggy

One of the joys of motherhood for me has been the world of children's literature. The Snowy Day, Goodnight Moon, Who Said Red?, and Harold and the Purple Crayon. Such wonderful stories. But if any of you have a house full of children's books, you know that for every delightful book there are at least three awful ones. They can be bad for a variety of reasons: insipid stories, bad illustrations, or they are not really designed for children. The worst offenders, however, are the hyper-moralistic stories bent on teaching children values.

While the author of the newer Berenstain Bears series might be the worst offender, the one that has gotten my goat most recently is Richard Scary's Pig Will and Pig Won't: A Book of Manners. If you can't already guess the plot line, let me offer you a short excerpt: "If Mother Pig asks them to please be quiet, Pig Will whispers, 'I will.' Pig Won't shouts out, 'I won't!' Bad Boy!" On a side note, I'd like to ask Mother Pig to stop splitting infinitives, but more importantly, how ridiculous is this book? Is this really a story? Indeed it is. Pig Won't doesn't remain entrenched in his stubborn ways. In a moment reflective of a Billy Graham crusade, we turn the last page to a chapter entitled, "Pig Won't's Decision." (Again, who edited this book?) A worm named Lowly tells Pig Won't that being nice gets you friends. Pig Won't "decides that he will try to be good."

Martin loves this book. He reads it several times a day. And to my chagrin, its moralism works on him. Martin actually talks about his behavior in terms borrowed from the book. If he is being bad, he will say that he is Pig Won't. The book's characters are so clear to him that I have taken to invoking them. When I saw him wrestle a 2-year-old to the ground the other night, I had two questions for him. "Are you Pig Will or Pig Won't?" "Pig Won't," Martin replied. "Are you ready to be Pig Will?" I asked him. "Yes, I'm Pig Will," he answered.

While I never expected that life with a 5-year-old would involve lots of conversational subtleties, I wasn't really expecting this either. Tonight, Martin was upset about not being allowed to go outside. In response, he banged his head on the front door and broke a small pane of glass with his forehead. I was gone (he did this on the babysitter's watch). But if I were home, it would not have helped for me to talk about the danger of broken glass, the perils of running outside without an adult, the problems of disobeying the babysitter. The clearest thing I could have done is say, "Martin, you are being Pig Won't. Pig Won't is not welcome here. It's time to be Pig Will."

do i have an ethic left?

When I was pregnant with Martin, I heard all the classic lines. "You're life will never be the same." "Watch out, parenting is hard work." "Get ready to lose a year of sleep." Then I had Martin and life was really great. I didn't get much work done. And I did lose some sleep. But the positives significantly outweighed the negatives. I wondered why, when people told me it would be so hard, that they forgot to mention that it would also be so much fun.

But maybe they were referring to now, the time I have an autistic 5-year-old and a teething 16-month-old. This is hard, particularly in the evenings. My spouse and I mentally prepare ourselves for a patience-draining period between 5m and 8pm every night. The time usually includes only one of the two children actually eating any of the home-cooked meal one of us has prepared. It also involves at least one of them losing it for a seemingly insignificant reason, perhaps a limit on raisin intake or a misplaced deck of president flashcards. It also involves Martin acting like teethbrushing is a violation of the Geneva Convention and Sasha screaming out to the four corners of the earth that her awful, awful parents have dared to put her to bed at 8 o'clock. I'll just admit it: for the past several weeks, if not months, I have rarely enjoyed my children in the evenings. I'm considering various vices to get through the evening hours. I've never liked Scotch. I've never even tried marijuana. But this seems like a situation where both might be in order.

My husband and I took a vacation earlier this summer. To celebrate our 10th anniversary, we spent 13 days in Croatia and Bosnia. It was our first substantial break from childcare since Martin was born. It was wonderful. But now that I've had a taste of a break, I seem less and less able to live without one. Vacation made me a wimpier parent. It made me want more vacation. (Note to Calvin or Weber: your Protestant ethic has been vindicated, at least in my life.)

But maybe these feelings about evening after evening with cranky kids in contrast to lovely memories of the Adriatic Sea relate to what I was writing about yesterday? Rather than feel bad about wanting to up our liquor intake or dreaming of far-off locales, what we need are more hands on deck. More hands to help with the challenges of parenting any kids, but especially special needs kids. But how to find those extra hands? That's the problem.

olden times

If I had more time on my hands, I'd start fan clubs. I've considered the "Raw slices of kohlrabi fan club," "Obscure Prince hits fan club," and "Miniature lop rabbits fan club." But if I were pinned down today and had to start a club, I'd found "The Jill Lepore Fan Club." I am an adoring fan of this Harvard history professor and New Yorker writer who meditates on everything from the founding fathers and antebellum race riots to the history of breastfeeding.

My latest favorite is her piece in the New Yorker about the history of parenting. (http://www.newyorker.com/arts/critics/books/2009/06/29/090629crbo_books_lepore)
She explores the history of American "parenting", especially as it evolved to distinguish between those people who had children and those who did not. Lepore argues that in olden times (ie. up to the turn of the twentieth century), every adult parented, whether they had their own biological children or not. Most adults lived with children in their households, even if those children were not there own. They were children of extended family members and were everyone's responsibility. Lots of cultural changes gave us the world we now inhabit, a world that Lepore describes aptly when she observes that, for some women and men in America, the first baby they hold is their own.

Her article reminded me of another major change in American life. Before the turn of the nineteenth century, before we had institutions such as mental asylums, prisons, and orphanages, folks with mental problems, criminal propensities, and no parents were usually absorbed into their families and villages. These were the kinds of families that Lepore describes. Multiple people in a household with a common responsibility to support the welfare of children and other members on the margins. This set up must have made dealing with special needs children (yeah, yeah, I know the term is anachronistic) a very different experience.

I'm not one to romanticize early America. I know things like how many capital crimes there were and how many people were disenfranchised and I haven't forgotten about chamber pots. But the trends in parenting that Lepore describes have had an incredible impact on people who have children who are not typically developing. The trends that make for a parenting experience in which "all the mothers want forgiveness; all the fathers want applause" is simply amplified for parents with special needs kids. To a great extent, our culture leaves you on your own to parent. It offers lots of products to assist parents, but autism is hardly assuaged by merchandise. Life with autism is only made livable - and slowly and surely made better - by lots of time and contact and connection. Our parenting culture is short on these things.

To be sure, I shot myself in the leg on this one. I chose not to live near my parents or my spouse's parents. "The power of culture" is not totally to blame. But the power is there. Read Lepore. You'll be convinced. And then join the fan club!

focus

My favorite Baptist once warned me about Ci-Ci's Pizza. Somehow, back in 1996 or 97, he got wrangled into going to one. Something with a youth group, if I remember correctly. He returned from the adventure like a New England captive's arrival home after some quality time with the Indians. "It's awful. It's loud," he cried. "Yelling children everywhere. Don't let it happen to you."

I was at Ci-Ci's tonight. It's one of the only restaurants Martin can manage. We take him there as a reward for good behavior. Fourteen smile faces earn pizza, or ice cream, or a special movie with the rest of the family. I always think of my favorite Baptist when I visit Ci-Ci's. It seems that now, more than a decade later, the place has more construction workers and football players than children. You can get a free drink if you bring in your church bulletin. It has Wi-fi. Where Ci-Ci's might have once been a horror, now it's just surreal.

When I'm in places like Ci-Ci's, I'm secretly glad that Martin's mind is so impenetrable. He has no idea that he could ask to play video games, beg for candy from the machines, or watch the television. He simply does his routine. He asks the cashier for pizza (usually starting his request with the line, "Hello, cashier"). Then he eats two slices of cheese pizza, three carrots, and a brownie. He sits in the seat of the one of the video games for a few minutes. Then he is ready to go. He is unfazed by the moms talking sternly to their children. He doesn't notice all the awful stories on CNN as it plays endlessly.

I hope that we can find things that make the best out of Martin's focus. I once read a story about a guy with Asperger's who got fired from any job that required multitasking. Then he got a job editing and writing introductions for medieval poetry volumes. He could throw himself into it. He loved it and he was good at it. Maybe Martin can be a monk, or a science researcher, or a builder. Maybe he'll draw comics or become a surfer. Whatever it is, I think it will be one thing. And he'll take that one thing with him wherever he goes. And it will be the thing most present to him, even in crazy and noisy places like Ci-Ci's.