ug

I'm sad to report that I basically got beat up by Martin this evening. He was completely strung out after another day of throwing fits at school. He simply lost it when it was time to put on pajamas and go to bed. My arms are all red from where he hit me.

I have no idea how to help Martin when he gets to this point. I try my best to make a world for him in which he never has to feel such desperation. But I'm not in control of everything, or really, anything.

wish

Martin has a hard time recognizing that other people have birthdays. Whenever we tell him about a celebration for someone else's big day, he insists that it is actually is birthday. In fact, when we told him that Christmas was a celebration of Jesus' birthday, Martin said that it wasn't Jesus' birthday at all. Instead, it was his.

Yesterday was my birthday. I wanted, somehow, to help Martin in his process of recognizing other people and cooperating with them. I thought I'd try a project that Martin would ostensibly enjoy: making chocolate cake. My husband gave me the idea of radically simplifying the operation and making a list of what Martin should do. I measured everything into little bowls. Then I made a list that went something like this: Butter, oil, sugar, MIX. Eggs, vanilla, MIX, and so on.

When I first invited Martin to make the cake with me, he insisted that he wanted to make a cake similar to one he makes on a computer game. I told him that our cake had many of the same ingredients and Martin seemed willing to try. He helped with every item on the list, including the sprinkling of chocolate chips on top at the end. He also licked the batter off the spatula, which is a perfectly normal thing that Martin usually refuses to try. When the timer went off, Martin jumped up and down at the prospect of eating the finished cake.

We didn't make it through the whole day without Martin's insistence that it was actually his birthday. But we did move forward in our effort to help Martin learn to accommodate other people's wants and needs. I didn't have to make a wish when I blew out the candle on my cake. The cake was a sign that I'd already gotten it.

partners

Martin and his sister have a volatile relationship. Full of love, full of frustration, and sometimes full of physical conflict. If he is Bert (the paperclip-collecting puppet on Sesame Street), then she is Ernie (the puppet who makes goofy jokes and giggles). If they were the A-Team, she would be crazy Murdoch and he would be taciturn - and potentially explosive - B.A. Baracus.

I've read that an autism diagnosis sometimes means that families stop having biological children. They worry about having another kid on the spectrum. They wonder if it's fair to the developmentally disabled kid they already have to bring another screaming, needy infant into the world. And they consider what it might be like for typical kids to grow up with siblings on the spectrum. For some people, it's enough to stop further babymaking.

I found out I was pregnant with a second child just a week or two after Martin's diagnosis. Our entire experience with autism has run concurrent with expecting and then having another kid. For us, this has been an overwhelmingly positive experience. True, it's totally nuts at times. And sometimes Martin struggles to assert his way in a family that consists of not just his parents, but also another kid. Most of the time, however, it's been great for Martin to have a sibling. They talk to each other. They play together - sometimes. Martin's sister provides him with endless opportunities to practice the social skills that are so difficult for him.

There's one aspect of their relationship that I didn't expect. Sasha's little-sister love of her brother makes her want to be just like him, autism and all. She is also obsessed with the presidents. She, too, will listen to us read a book about the First Ladies. This emulation won't last forever, but for right now, I think it's nice that Martin has someone around who thinks so highly of him.

She teases him as mercilessly as Ernie teases Bert. And she drives Martin even crazier than Murdoch does B.A. But like both of those sets of characters, Martin and Sasha make a nice little team.

PS - School is going well and Martin now knows the names of all the First Ladies.

first day

Monday is the first day of school. At 8:40, Martin will climb onto bus #13, new backpack and new lunchbox in hand. He'll ride a few blocks to school and greet his classmates and teachers, the same ones from last year. He'll be in the same class with the same routine. We're hopeful for a smooth transition.

School is starting not a day too soon. Because we've been out of town so much of the summer, we had few structures in place for the last three weeks before school started. We've found a few babysitters here and there. We've taken a few trips to the zoo and the pool. But most of the time, we've been trying (and failing) to keep Martin occupied. Our summer experiences, both at home and in Virginia, have left me with a few resolutions for next summer.

1) If our schedules allow it, we will leave town for a significant chuck of the summer. Going to Virginia was hugely positive for Martin. The change of pace, along with relaxed atmosphere, was just right for him.

2) Whenever we're at home, we'll have some structures in place to keep Martin occupied. Whether it's sports camp at the Y or a babysitter willing to take him rollerskating, we won't try to do it all ourselves.

3) More popsicles.

4) We'll ask f0r more help. I think I could have bugged people more. I could have called them up and said that I was dropping Martin off for a few hours (along with a box of ice cream sandwiches, if that would help it go down easier). I have to remember that every time I have asked for help, I have gotten it. I just have to be willing to do it.

In summary, I think what Martin and I need each summer is a country property with a popsicle dispenser and a few tents for our friends. Until that happens, we'll get on bus #13 every morning and hope for the best.

yo, teach

It's all about teachers. Martin had a successful week at pee-wee sports camp because the teacher wasn't concerned if Martin's attention sometimes wandered. He didn't feel threatened if Martin didn't participate in every game. The teacher simply wanted Martin to be safe and have fun. He found ways to invite Martin into the games. He got my kid to do between 65-75% of the activities. For a family that is often left wondering if Martin will get kicked out of activities, this was a big success.

For a long time, I thought that being able to deal with autism was a personality thing. It seemed to me that some people can go with the flow and others cannot. Some folks can tolerate difference and chaos while those things trouble others. Unfortunately, I understand myself to be in the latter category. In my daily battle with frustration and impatience, I wondered if poor old Martin had gotten himself the wrong mom.

Over time, I have come to see that there are some people who - just by disposition - can deal with the uncertainties of behavior and interaction that being with an autistic person can present. Martin's sports camp teacher seems like one of those people. But I think the rest of us can become more like those people. We just have to have a reason to try and chance to practice. Of course, I have both. I have a kid who I love and who isn't moving out any time soon. I think others have to be persuaded.

A case in point is Martin's most recent Bible school teacher. Our last week in Virginia, Martin attended a second Bible school. Unlike his prior experience, this one didn't go so well. Of course, Martin hadn't changed, but the expectations were different. The teacher wanted Martin to do what everyone else did all the time. It stressed her out when he didn't. Instead of saying, "It's Bible school not astrophysics class," the teacher got into conflicts with Martin. She created power struggles over such pressing matters as storytime.

Martin only lasted half a week at this Bible school. And I have to admit that I was pretty aggravated about how things turned out. But I hadn't taken the time to give this teacher a reason for cutting Martin some slack. I hadn't done enough to let her know it was OK if Martin didn't come home with a successful pet rock craft or a Bible verse memorized. And because I didn't let her know that is was good enough simply to have Martin along for the ride, she had no reason to adjust her expectations and try to accommodate him. Next time.

The reason for accommodation can never be that we need autistic people to be just like the rest of us. We can never fool ourselves that they will (or want) to be like us rather than be themselves. Rather, the reason must be that the world is big enough for all of us, that to leave out the autistic kid is get to the end of the Bible school week and be missing something.

back home again

It's been a big transition. The country life exchanged for small town living. Endless lawn to play in given up for a postage stamp of grass with a cute sandbox. We've left the novel and returned to the familiar. But it's all good. Martin has made the transition quite well. It's been a bit bumpy when we couldn't manage to provide the stricture he needs, but it's gone better than many of our past summer adventures. Through it all, he's still Martin, full of brilliance and goofiness that makes our days both fun and exasperating.

For instance:

Martin sat through his first real haircut from a professional stylist. He no longer looks like a child to whom Sally Struthers asks you send money.

When greeted with open arms by his little friend, Laura, instead of welcoming the embrace Martin did something akin to setting a pick in a basketball defense.

Martin found a Youtube song about the presidents, a ditty with a PG rating. I realized this had happened when I heard Martin singing: "James Monroe told Europe they could suck it and Richard Nixon was a dirty filthy liar." Time for more parental controls during computer time.

Martin helped me plant some basil and insists on watering it every day. He's never taken interest in our garden before. I think that's because he never got it. He couldn't comprehend that you put something in the ground and it grows and you eat it. Now he does. He can hardly wait to visit the plant each day.

This last story shows me how much Martin can be interested in the world once he understands something. I often interpret his response to new things to be disinterest. But more likely, Martin is simply baffled by the new thing and lacks the words to communicate that he is baffled. There are so many things that Martin took a long time to do because he simply couldn't understand what people were talking about when they told him to zip his jacket, use a pair of scissors, ride a bike, or swing across monkey bars. And there's been no single way to teach these things to him. Every difficult thing requires consideration of how to present it so that he might understand.

Now we're talking about what to do during the few weeks before school starts. Tomorrow, sports camp at the YMCA. We'll see how that goes.