christmas colors

There's a popular system for regulating elementary school behavior. Good behaviors merit a designation of green. With lots of green days, a kid can earn a prize. A few bad incidents might merit a yellow or a blue. The yellow means you had an outburst, but managed to pull it together. Blue means you couldn't pull it together right away, but could eventually. Like soccer, red means you exhibited really bad, and basically unrepentant behavior. At school, Martin always gets either green or red. There is no middle ground.

It's the same at home. The past two weeks have been either heaven or hell. At times, Martin has been inquisitive, warm, and hilarious. He's learned all the first ladies. He's learning the vice presidents. He plays in a tent we set up in the backyard. Today, he invited a friend to go to the playground with him and, without prompting, thanked the friend when we dropped him off afterward. There are moments when you look at him and forget that he has an autism diagnosis. There seems to be nothing in between him and the rest of the world.

But then it comes back. Usually we have no idea why. But something will set Martin off. And then there is scratching and hitting, yelling and kicking. He's so frustrated about something, but he can't say exactly what. And even when he can express his desire, he can't handle it if the request is denied. For instance, he demands that I carry him. I simply cannot do it anymore. He's just too big. When I tell him I can't, you'd think I just denied him candy for the rest of his life, or oxygen. The response is so instant and so dramatic. And I can't do anything. I certainly can't give him what he wants. And I can't seem to find a way to convince him that life might be OK if I don't carry him.

So even though it's only September, life is red and green for us.

try, try again

So it continues. We were having the most wonderful Sunday. Martin made it through his first visit to a new Sunday School class for children ages 6 and 7. We went out for breakfast afterward. Martin ate lots of pancakes and was polite to the waitress who served us. In the afternoon, we took a long hike in a local park. Martin climbed fallen trees, found old bird feathers, and gathered some acorns. It was all so lovely.

Then we went to our Sunday evening dinner group. And I must admit some of my own mistakes here. I was watching Martin's sister and also trying to eat, so I didn't always have my eyes on Martin. I noticed a few times that he was flustered about sharing some balls that he and other kids were kicking around the yard. I saw that the play was fairly rough and tumble. Martin took a whack in the face from another child. Then he delivered one in return. I took him aside for a time out, mostly hoping that he could cool down. Things didn't go as planned.

Martin refused to sit down. He kept jumping up at me and flailing his arms. Hoping to get him away from other people, I took him to a small side room. There, things got worse. He started to kick me. I couldn't get him to sit in a chair for even a moment. He even spit at me, which was a new low. He was utterly out of control. Since my husband was at a meeting, I had to ask another man at the group to hold Martin for me. I couldn't manage him myself.

Being held by someone other than a parent made Martin even more mad, or afraid, or something. I left the room, trying to figure out what to do. Within minutes, I decided that we should just go home immediately. I went back to the side room to get Martin and asked if he was ready to walk to the car. He said that he was, but he was still crying. He told me that he didn't want to be held, that he just wanted to go home. We did go home. I cleaned up his face. We ate some cereal together. And then he laid beside me in bed. Soon he started to hide under the covers, pretending to be in a chrysalis. He emerged as a butterfly, flapping his arms with a big smile on his face. For him, it was as if the events of the hour before hadn't happened. I, however, can't seem to forget that my kid spit on me.

I used to think that we were working toward something called "better." But I'm beginning to think that such a notion is only a set-up for a letdown. Every success Martin has leads to more integration with the "normal" world. And most of his new encounters with "normal" have not gone well. I know we have to keep challenging Martin to try new things, otherwise he'll never progress. But this process sometimes makes me think that we're destined for intermittent and never-ending experiences of disaster. Every new encounter is a potential trauma for him, and therefore, for us.

Some days I feel strong enough for it. Yesterday and today, I don't.

jekyll and hyde

Martin is really wonderful. Before falling asleep, he tells me that he plans to dream about boats. He pretends to enter a chrysalis and emerges as a butterfly. He reads books about the first ladies to his little sister. He tried a piece of lettuce last week.

But then he is awful. Instantly awful. As far as I can tell, he becomes awful the moment I say the word "no." I've been hit, kicked, and screamed at. His teacher has also had to deal with hitting and kicking. He just turns on a dime and your left there, suddenly, being accosted by a 6-year-old.

During the summer, we took a break from the behavior counselor that Martin was seeing. And when we returned home, we thought we might focus our concerns on Martin's eating issues by spending some time with a therapist who helps kids become more open to food. But I think we'll be heading back to behavior counselor. It's good that we can do that, but it's one more appointment to add to our week. It's one more thing to ask Martin to do instead of chilling at home reading president books and eating graham crackers.

Despite the fact that this new appointment will stress out our schedules and keep Martin more busy than we'd like, we simply have to do it. He's clearly struggling - and failing - to keep it together when he feels challenged. So we start next week and hope for more Jekyll than Hyde.

green day

Things were bad. Martin spent several days in a total funk. He was excited to go to school, but acted out once he got there. He came several days in a row, reporting to us that he had a "red day." Martin's teacher uses color codes for discipline. Red is the worst. It means a student must write an apology note.

After several red days and after Martin's terrible behavior at home, something changed. He slept about 12 hours one night. And his teacher - genius that she is - tried a new system of rewards with him. Ever since, he's come home reporting of his "green days," the very best you can have. He's been much nicer to us. Things are getting better.

In other news, I think I've happened upon an awesome career for Martin: Japanese steak house (JSH) chef. On a recent visit to a JSH, I noticed that the chefs do the same thing and tell the same jokes over and over. It's a funny little routine, requires a certain skill set, and can be done successfully over and over again in exactly the same way. Perfect for autistics. Now, I'm not sure about the whole dealing with customers part of the job. But I thought about Martin having a life where he can do something relatively fun, amuse himself, and repeat ad naseum. Maybe?

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.