learning to play

Many autistics can occupy themselves for long periods of time. Way before we even anticipated a diagnosis for Martin, we noticed his amazing capacity to amuse himself. As a baby - after he could sit up but before he could crawl - we could give him a piece of paper and he'd play with it for half an hour. We had to start worrying, however, once he started with his obsession for "A Charlie Brown Christmas" sometime between turning two and three. Basically, all of Martin's playing served as formats for re-enacting Charlie Brown. He acted out the parts with his stuffed animals and little figurines. He looked for Christmas cards in every mailbox, just like Charlie Brown. He recited the lines over and over again. We soon realized that Martin had no idea how to play using his own imagination. He could only act out scripts.

I know, I know, isn't all childhood play the acting out of the scripts of life to some degree? When we play with dolls we acts like parents, right? When we establish fanciful games with our friends it's just riffing on the world. I kept telling myself that. It took a long time for me to realize that Martin wouldn't be able to create fancilful games with friends or pretend to be parents with kids at school if he could only say lines from Charlie Brown. After his diagnosis, we read that constant repetition of scripts serves as a comfort to autistic kids. When a situation is new, they can bust out the tried and true lines from movies and books. They struggle to adapt to the new situation, which means they can hardly handle a new potential friend, a new place to visit, etc.

We worked with Martin to push at the boundaries of the scripts. For awhile, he was all about "The Three Little Pigs," a particualr version he had heard on a CD. When he acted out the script - using penguins since he didn't have three stuffed pigs - we would ask him questions after he finished his own story. Do the pigs go to school? What do they like to play? Are they hungry?

After weeks of this, I finally heard Martin in the midst of what might be called imaginative play. He was holding a birthday party for the three little pigs/penguins. There was singing and a cake and candles. And even though he was borrowing from another life script, his mind chose a new option and not the old story. This was just a few months ago, nearly two years after Martin's diagnosis. Nevertheless, it was a great day.

hello, mr. president

I'm happy to report a good turn of events. After a Wednesday that included a trip to a little zoo, swimming at the Y, and an evening lollygagging around the community soccer field, things are better in the household. Martin is back to his old tricks, which include some sort little obsession in which you can line things up. Today, it's been president cards that he lines up alongside his president placemat. Because that's not enough, Martin requested that we look up more presidents on the computer and print off their pictures. (This moment involved one of my favorite Martin locutions, "Can we go ask the computer?") We only made it to Chester Arthur before Martin's tutor arrived. Tomorrow, we'll do the rest, including the one Martin calls "Mr. Obama."

If you know any kids on the spectrum, you have probably witnessed two things: their love of lining things up and their astounding capacity to memorize. On good days, these habits are fun. It's a good time to count out the presidents and put their cards in order. It's a hoot that your kid knows about Millard Fillmore, including that he led the Whig Party. Martin has all sorts of little party tricks like this. He knows the name and location of every country in Africa. He knows his state capitals. Nothing makes him happier than to pour over a puzzle or a set of flashcards that give him interesting information to absorb.

On other days, though, these habits are depressing. Lining up all the smallest Lincoln Logs or singing countries of the world songs seems so sad when he does that itstead of playing with other kids. It speaks to the sufficiency of his own little world when he looks at his puzzle, looks at us, and then says, "Can you walk away, please?" I hope there's a place for him in this world that maximizes the great things his brain can do. I also hope that there will be ways to draw him into the social aspects of life. Anyone want to chat with him about the presidents?

love

It's an opportune moment to be thinking about autism. Hollywood is about to release "Adam," what could also be titled, "An Autistic in Love." (http://www.foxsearchlight.com/adam/) I shouldn't really joke. I've watched the trailer three times and cry like a baby each time.

There are lots of kids on the spectrum who don't do expressions of love. They don't hug, kiss, or say "I love you." I feel lucky that Martin is not one of those kids. He hugs us, both when asked and voluntarily. He kisses us as well. He has learned to say, "I love you," and has used the phrase appropriately (meaning that he says it at the right moment, like after someone has said that to him, not when someone has asked him to pass the salad). But Martin also expresses love in ways that are - shall we say - quirky. I've noticed in particular that he wants things and people he loves to sleep in his bed. He takes objects to bed every night: speech homework, stuffed penguins, plastic letters lined up on his pillow that he configures his body around. Last night it was a bowl with a spoon, a baby carrot, a potato, and a plastic celery toy. Whatever he loves most at the moment, he takes to bed.

When I have put him to bed, he'll say things like, "You do not have to go to bed in your room" or "You must go to sleep by yourself." I figured out that when he says this, he means "Stay in my room" and "I don't want to go to sleep by myself." Martin shares a room with Sasha. For whatever reason, Sasha sometimes sleeps in a different room. When she does, Martin often takes his pillow and blanket and sleeps in her crib. For awhile I thought this was some sort of reversion, but I'm beginning to think it's a way of showing that he loves her.

So, the movie trailer gets to me because it exposes the challenge of reading an autistics person's signals of love. And the difficulties they face in reading those signals in other people. It makes me want to scream: "Isn't love hard enough already? Who needs a processing disorder to complicate all the other difficulties of relationships?" But I shouldn't be too worried. I know from Martin's life that he loves people beyond his immeadiate family and they love him. At school this year, he was part of a trio of boys who did everything together. They ate snack, baked bread, worked on puzzles. They wandered the classroom hand in hand. So, I have to remember that there are people out there who will get Martin. And hopefully Martin will learn to see when love is being shown to him.

the nuclear option

Discipline is an issue for all parents. It poses an especially difficult challenge to parents of autistics. There are ways in which the rules of discipline simply don't work for these little people. For instance, if you have trouble picking up on social cues and you struggle to understand causes and their effects, you will probably be clueless when someone practices any form of discipline on you. There are other ways, however, in which discipline is even more important with autistic kids than with typicals. Some way, some how, you've got to communicate to them to refrain from running in the street, to try to pull it together when the grocery store meltdown is pending, and that kicking is not a format for showing love.

We're having a particularly tough week with Martin. He's happy as long as he gets to do whatever he wants. If we let him watch a 24-hour loop of Mary Poppins and Blue's Clues, eat PB&J for every meal, and have unlimited fresh blueberries, he would be all politeness. But life doesn't go that way. And the fact that you can't always get what you want (to quote the Stones) is something that parents of autistics have to work especially hard to get across. Let's just say, we're not doing very good at it right now.

Which brings me to a painful admission. I HAVE SPANKED MY KID. Yes, I admit it. I don't like it. I've got that classic, middle-class, smart-people aversion to it. But I have done it. I have done it after warnings, after time outs, after every other strategy has fizzled out in a flash of ineffectiveness. And here's what I've found about spanking. Sometimes it works and sometimes it doesn't. There are moments when the warning that a spank will be delivered seems to travel directly into Martin's brain and cause a reconsideration and reformation of behavior. There are other moments when he either laughs at it or seems oblivious to it. So, like every form of discipline, it is not foolproof, but it can be useful.

I imagine some of you are now aghast, reconsidering your friendship with me, or about to call CPS. All I can say is that I'm sorry and I'm human and we're having a hard week.

the best buddhist

My husband and I joke that if there was a sitcom about our life it would be called "The Worst Buddhists." I'm very attached to things. I struggle with the world as it is. Etc. What cracks me up is that Martin is - in some respects - the best little Buddhist. He lives in a sort of eternal now.

For instance, last night I was talking to my spouse about taking a trip to see friends in Durham, NC. We discussed going there sometime between now and Christmas. Martin whipped around from his bedtime snack and said, "Can I go with you?" He gobbled down his snack. He headed for the garage. He got in the car. He was ready to go to Durham RIGHT NOW.

We spend a lot of time trying to figure out when we should reveal things to Martin. When do we tell him that we're going to Croatia for two weeks and he's staying home? When do we tell him that summer vacation is at hand and there will be no more school? For Martin, having a birthday means it's going to keep being his birthday. Vacation Bible School should be everyday. Weekends make no sense whatsoever. Why would you need a break from your week, from the routines that make life meaningful?

Really, he's got a little good Buddhist in him, but also a little of the worst. He, too, wants the world to go his way. All the time. And I guess that's what makes him my kid.

movies

Yesterday, we had our second "Family Movie Night." Actually, it was the third attempt. The first was successful. We made popcorn and watched, "The Muppets Take Manhattan." Martin watched about three-quarters of the film. Our second effort didn't go so well. I rented "Ratatouille." The opening scene scared the life out of Martin. There were rats yelling at each other. The movement was fast and jerky. The pace and feeling was frantic. Martin freaked. So last night we tried "Mary Poppins." Something about older movies' slow pace, less complicated plots, and lack of ironic humor seems to work for Martin. This made me wonder why movies for kids today are fast paced, complicated, and full of irony. Weird.

I should have known this is how it would be. Before we started "Family Movie Night," Martin had watched only one full-length film in his life. When he was two, we put him to bed one night and started to watch "My Dinner with Andre." For anyone who hasn't seen it, the title is not misleading. It really is an entire movie that consists of two guys eating dinner together. One of the guys really is named Andre. A few minutes into the film, Martin came out of his room. We said he could sit with us, figuring that watching two guys wat dinner and discuss things like modern art would bore the child to tears. No such luck. He watched the whole thing.

And this brings me to my last point. I'm guessing that every parent with a kid on the spectrum wonders why they didn't catch it sooner. There's a little bit of guilt involved because as soon as you get the diagnosis you hear about the importance of early intervention. How did I not realize something was up with my kid who could sit through "My Dinner with Andre"? Most adults wouldn't sit through that movie.

Life with an autistic child is one in which you are always trying to figure out if you are doing enough. Enough therapy. Enough structure in your family routines. Enough social stimulation, but not so much that it overwhelms. Most of the time, I'm OK with what we've pieced together. I overshoot sometimes, the most recent case being the T-ball disaster. And I constantly underplay our hand. We beg out of parties and stay home on Saturdays because life is just easier that way. So, onto films like "Swiss Family Robinson" and "Singing in the Rain." I'll leave Pixar for more sophisticated types.

the language gap

Every time I'm around my friends' typically developing 2 and 3 year olds (typicals), I go through a three-step process. First, I am simply astonished that they can answer my questions about things like what they did yesterday or what exactly they are doing with that toy teaset. Second, I tell myself that these kids must be so advanced, that being professor's children must give them a leg up on language learning. And third, I have that moment of heartbreak when I realize that it is not this kid who is far ahead, but my own kid who is so far behind. Martin (who is five) cannot reliably tell you what he did yesterday. Every once in a while he can let you into his world of imaginary play with a sentence like, "The toy ducks are going to the ocean."

Because Martin is my oldest child and Sasha is only just learning how to say a few words (she's 14 months), I have no idea what it would be like to raise a child who can talk to you. I have no idea what it would be like to take a kid trick-or-treating without cue cards. I have no sense for what my days would be like if it would be easier for Martin to tell me when he's hungry and thirsty.

Some philosophers say that our experience of the world is organized, understood, made possible even, by language. (If you're a Wittengenstein specialist, stop reading right now because I'll probably get some of this wrong.) That's why we don't have memories from our earliest childhood - because we didn't have language. We begin to have memories when we have enough language to hold onto them. I wonder if Martin will remember anything about being three, four, even five. What would it be like to be unable to remember parts of your life that everyone else seems to have at least fleeting memories of?

Elton John

A few weeks ago, I asked Martin if he wanted to play with his dress-up box. He agreed and eagerly put together an ensemble. It included snowman slippers, a cowboy vest, a plaid scarf, purple-tinted round sunglasses, an Amish straw hat, a purse, and a wand. It was really cute. It was also an outfit best suited for an Elton John lookalike convention.

In my research about parenting kids with autism, I read that parents are called upon to help their children navigate social expectations that allude them. Autistic kids don't pick up on lots of social cues, including fashion. (Interestingly, Martin doesn't pick up on gender. He always mixes up his pronouns.) When I read that I might have to help my child clue in to social expectations, I just about freaked.

You see, I hate that stuff. Maybe it's because I grew up memorizing Romans 12:2 in the King James Version at bible school. Maybe it's because I wasn't popular myself. But for as long as I can remember, I'm never thought this world deserved my conformity. In high school, I wondered why I would want to be like a world where football players and cheerleaders were the most popular? I found a little group of friends that, instead of getting drunk on weekend nights, scaled buildings, watched Chevy Chase movies, and played board games. We were actually pretty happy.

Even though my life looks more conventional now (I have a job, a house, etc.), I still have this little voice inside that urges me to resist. I don't have a TV. I won't eat food with HF corn syrup. I buy half my clothes second-hand. But now I'm supposed to help my son understand and participate in these social expectations? These parenting books recommend helping your child choose acceptable clothes, learn about the latest movies, and teach them slang. I'm not sure if I'm just resisting this because it will be another huge sacrifice OR if it just might be the case that autistics are right and the rest of the world is wrong. Maybe those of us who struggle with Romans 12:2 can take a lesson from autistic kids who can simply do it with no problem, no awareness, even.

What does she mean by "rainmom"?

Rainman....rainmom.....get it? I've got a son on the autism spectrum. The part in the middle. Pervasive development disorder. It's characterized by the social delays associated with Asberger's Syndrome. It also includes verbal delays. It does not include some of the characteristics of full-blown autism, such as the inability to speak, refusal to show affection, etc.

I'm actually walking into a minefield by offering such brief characterizations. No two autistic children are the same. Some show all the classic signs while others do not. Let me tell you about Martin's fourth birthday so you can get a sense of what our life is like.

On May 14, 2008, Martin turned four. I gave birth to our second child, Sasha, just five days earlier. We wanted something low-key, because I had just given birth, but also because Martin didn't know what a birthday was. So we had some strawberry pie after supper. We sang "Happy Birthday." And we tried to show Martin how to blow out candles. We helped him blow them out.

After supper, Martin picked up some of the Bob Books we had gotten him recently. For the uninitiated, Bob Books are for early readers. Mostly three-letter words. We had never read them to Martin. He picked up the first one and read it to us. He was wearing a diaper at the time. It's a strange thing to have your child read their first book when they still can't use a toilet.

I'm blogging because having a special needs child can be lonely. People don't want to pry. They focus on the positives. In this way, people are nice. But life with Martin includes very difficult moments. And I'm a little tired of keeping them within the family. So, here's my blog. And I'm gonna do my best to write every day.