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My Brother Sam He's eight. He has autism. He's the most interesting person I know. =|=|=|=|=|=|=|=|=|=|=|=|=|= Mom and Dad know about this page. If you know us in real life, please be kind. Sam can't read this yet, but if he ever does: hi, Sam. Sept. 26, 1999 -- Sunday Rainy Sunday. The first real rain since June, the kind that means summer's actually over. Two proud things this week: 1. Miss Kim, Sam's aide at school, sent home a note Friday that said Sam sat through the WHOLE school assembly. Forty minutes, in the gym, with the microphone squealing and everybody clapping. He wore his headphones and held his school Percy, and he stayed. Last year he couldn't get past the gym doors. Mom stuck the note on the fridge with the train magnet, which is where the most important stuff goes. 2. This afternoon he was lining up his trains down the hallway, and I sat on the carpet at the end of the line like I always do, not touching anything. And he looked at me, not quite at my face, but close, and he picked up the little red caboose and put it in my hand. Then he pointed at the end of the line. I put it there, very carefully. He looked at it for a long time. He didn't take it off. I know that sounds like nothing. It isn't nothing. Nobody else is allowed to touch the line. Nobody. He hasn't said my name again since last Saturday. That's okay. I heard it. Listening to: Sarah McLachlan, Surfacing, the whole thing, with the rain. Sept. 22 -- Wednesday night I'm going to be honest because otherwise what's the point of this. I spent three nights on my science poster about the water cycle. Tonight I left it on the kitchen table for five minutes to go to the bathroom, and when I came back Sam had torn the whole bottom half off, because the clouds I drew were the wrong shape or the glitter glue bugged him or I don't know why. Sometimes you don't get a why. I yelled. Really loud. I said "WHY DO YOU RUIN EVERYTHING." He covered his ears and started rocking and humming, and I felt like the worst person in the whole world, because he can't help it and I can. Mom helped me tape it back together. It looks bad. She said, "You're allowed to be mad, Rach. You're just not allowed to stay mad." Then she said, "I get mad too." I didn't know that. She never looks mad. I went and sat outside his door until he stopped humming. That's my way of saying sorry. I think he knows. I'm still kind of mad about the poster, though. Both things are true. Sept. 18 -- Saturday SAM SAID MY NAME. I have to write this down exactly so I never forget it. It was 8:15 in the morning. I came downstairs in my pajamas and got the orange juice out. Sam was at the table eating his Cheerios one at a time in a row like he does. He didn't look up. And he said, "Rachel." Just like that. Not "Ray" or "sister" or a line from a video. RACHEL. Both parts. Like he'd had it the whole time and just decided today was the day. I dropped the orange juice. Not the whole carton, just the cap, but still. Mom came in from the laundry room and I said "He said my name, he said my name" and she sat down on the kitchen floor and cried. Dad came running in with shaving cream on half his face. We all tried to get him to say it again. He didn't. He went back to his Cheerios. Mom said the speech therapist told her once that words can come out of nowhere and then hide for a long time, and that doesn't mean they're gone. I'm 13 years old. I've known him his whole life. He's never once said my name. I didn't know he knew it. That's the part I keep thinking about. He knew it the whole time. Sept. 13 -- Monday At lunch my friend Jenna asked if she could sleep over Friday, and then before I answered she said, "Wait, is your brother going to do that thing? The flappy thing? Because that kind of freaks me out." And Ashley, my other friend, laughed. The flappy thing is when Sam gets excited and flaps his hands. It's his happy thing. It means something good is happening inside him. I said, "Actually, never mind, Friday's not good." Which is what I always say. I haven't had anybody sleep over since fifth grade. It's easier to go to their houses. I know they don't mean it to be mean. They just don't know, and I get so tired of explaining that I stopped. BUT. There's a new girl in my science class named Nicole, and her cousin has autism, and when I told her about Sam she just said, "Does he like trains or dinosaurs? My cousin is ALL dinosaurs." Like it was normal. Because it is normal. It's just our normal. Maybe I'll invite Nicole over. Maybe. Sept. 7 -- Tuesday First day of school for both of us. Mom was up at five making Sam's picture schedule for the fridge: a photo of the bus, a photo of his classroom door, a photo of Miss Kim, a photo of lunch, a photo of the bus again, a photo of home. He looked at it for about ten minutes and touched every picture twice. That's how he gets ready. Change is really hard for him, so you tell him in pictures what's going to happen, and then it happens that way, and he can breathe. This year he's in a regular classroom for part of the day, with his own aide. That's Miss Kim. She came to the house in August to meet him, and she brought him a little wooden Percy to keep in his backpack, a school Percy, so the home Percy can stay in the line. Genius. She's young and she talks to him like he's a regular kid, not like a baby. I liked her right away. He got on the bus. He didn't look back, which Mom says is a good sign. Mom cried in the driveway anyway. My first day of 8th grade was fine. My locker is right by the band room, so it's loud. I thought: Sam would hate this locker. And then I thought about him all through third period. Aug. 30 -- Monday Sam was up at 3 a.m. lining up trains down the hall in the dark. I sat with him till almost five so Mom could sleep. Too tired to write. More later. Aug. 17 -- Tuesday Bad day at the grocery store. They're remodeling, so everything was in a different place, and there was a guy with a loud floor machine, and the lights over the frozen food were flickering. Sam started humming in the cereal aisle, which is the warning. Then they did an announcement on the loudspeaker, really loud and crackly, and that was it. He dropped down on the floor with his hands over his ears and screamed and kicked. When he's like that, it's not a tantrum. It's like his whole body is a fire alarm and he can't turn it off. People STARED. A man with a cart just stopped and watched like it was TV. A lady said, not even quietly, "Somebody needs a good spanking." I have to write down the next part because it's true and I hate it. For about ten seconds I pushed our cart away and pretended I wasn't with them. Then I went back. I stood between Sam and the lady and just looked at her until she left. Mom sat right down on the floor next to him, calm, and counted slowly, and waited. It took a long time. The checkout lady was older with gray hair and she came over after and said, "My grandson does that. Take your time, honey." Mom's eyes got all wet. We left the cart. We had frozen waffles for dinner from the gas station. Aug. 10 -- Tuesday I'm starting this page because I don't have anywhere to put the good days or the hard ones. My friends don't really get it. Maybe you will. My little brother Sam is 8. He has autism. He was diagnosed when he was 3 and I was 8, which is weird math I think about sometimes. He doesn't talk much. He loves trains more than anything on earth. This summer I watch him three afternoons a week while Mom works, so here's how an afternoon goes, if you want to know him. 1:00, lunch: a peanut butter sandwich cut in four squares, not triangles. Triangles are a disaster. 1:30: trains. He has wooden Thomas the Tank Engine trains and he lines them up down the hallway, always in the same order: Thomas, Edward, Henry, Gordon, James, Percy, Toby. I figured out a year ago that's their NUMBER order, 1 through 7. Nobody taught him that. He just knows. If you bump the line, he has to start completely over from Thomas. 3:00: the same Thomas video, the same part, again. He says some of the lines right along with it. 4:00: the backyard swing, 200 times. I count out loud. He likes when I count. My friends were at the lake today. I was on the back step counting swings. I'm not going to pretend I didn't mind. But at swing 150 he laughed. A real one, from his belly, at nothing I could see. And I laughed too, and we were both laughing in the backyard at nothing, and I thought, the lake has nothing on this. ![]() If you have a brother or sister like Sam, I would really like to hear from you: [email protected] Some people wrote after the grocery store entry. It helped more than I can say. You are visitor number Last updated: September 26, 1999 E-mail: [email protected] © 1999 Rachel Back to the Enchanted Forest |