Echo

Michael and I have an inside joke. We pretend to pick up the phone and say, “Hello? Hi Banana, how are you? I’m good. Just hanging out. WAIT A MINUTE BANANA! You can’t be calling. You don’t have fingers! How did you dial the phone?”

The other game is the Fat Throwing Game. This was a funny way we learned to cope with our mother’s insistent fussing about our weight. The game is easy. We pretend to grab big wobbly pieces of fat off each other. Then we either have a fat fight (the equivalent of an imaginary food fight), or one person holds the wobbly hunk, while the other directs him or her where to throw it. Michael always wants it thrown at our mom.

“How much would you pay to get me back if I were kidnapped?” I asked Michael.

“Ten.”

“Ten dollars or ten million?”

“Ten dollars.”

“That’s it?!?”

“JULIA. That’s all I have in my wallet, okay?”

i’m jealous because you have more friends than me.

did my brother really just say that?

and he really was sorry. he was holding my hand with both of his and he kept pressing it to his cheek. i wondered, is michael saying this because it’s true or is this what my mom told him he was feeling?

when he loses control and then feels so sorry afterwards, it’s the worst feeling. like watching yourself die face-down in mud where no one will ever find you, just because that’s life.

somewhere in this universe, there are gods the size of humans, and humans the size of gods

somewhere, my brother exists

I’ve been hosting various people at our place so it’s gotten in the way of creative efforts, but it’s been a great time. My mom had a conference at Sony so we drove down from the bay area together on Wednesday. It was a relaxing drive where we chatted the whole way and watched the sun set over the hills. My mom wanted to stop at Harris Ranch for steaks. She didn’t remember the name of the place, just asked for “that famous steak place where everything smells like cow poo.” I knew that meant Harris Ranch. It was the first time I ate there as well and true to rumor, the whole place smells like pungent cow export, which kind of made me feel a little weird. The steaks were very good, but since I’ve been eating really healthy, I wasn’t able to eat very much of mine.

The next day, my mom had a meeting so I dropped her off and took Michael to get my car washed and to get him a haircut. Usually I tell the stylist how to cut it, but I figured I would let him do it himself. It just felt right.

When he was done, she’d cut it really short, almost like a crew cut. I freaked out inside because I knew my mom would freak out and ask me why I didn’t supervise. I asked Michael if he liked it and he said, “Yes,” so I didn’t want to be a jerk about it. But I was laughing because I knew how mad my mom was going to be (as predicted, as soon as she saw him she turned to me and asked, “How could you let him do that to his hair?” I told her, “It grows on you. It’s the same cut Brad Pitt had in ‘Ocean’s 11.'”)

My mom had a room at the Beverly Hilton, paid for by Sony so Michael wanted to stay with her. It was going to work out because Rie and Eric were going to stay with me that night, on their way to Coachella. Beverly Hilton is about 2 miles from my house, along the same street Michael used to walk from my house to my work so while I was dropping him off, I joked that if he got bored, he could just walk back to my place since it was off of the same street. He said, “Because it’s not that far, right?” I said, “Just a few miles. It’s not that far.” But then I remembered he takes everything I say seriously so I added, “I’m just kidding. If you want to come home, call me and I’ll come pick you up.”

So that night, I was waiting for Rie and Eric and rolled up a blend I wanted to try out. It’d been a couple of hours when I get a call from my brother. He asks me if I can do him a favor and I think, oh crap. I’m so not in the right state. He asks me if I can bring them some toothpaste. I ask him if he can just get it from the hotel. He tells me that the store is closed and they really need it. Since I rarely say no to my family, I figure, maybe this is a challenge from the universe, so I’d better suck it up and do it. Besides, it’s 1 street, 2 miles. I just have to stay close to the speed limit and be alert.

So I’m driving and everything is fine though I’m pretty sure I’m driving with my eyes bugged out. I’m okay, since it’d been a few hours since I’d smoked. I hit a stop sign and I’m trying to figure out which way would be the best way to go, when I turn and notice, there’s a cop behind me. I’m freaking out, racking my brain to remember if I’d made a full stop but I can’t remember. So I’m driving and this cop is behind me and I’m starting to freak out but I’m trying really hard to focus.

The cop stays behind me, ALL THE WAY into the driveway of the Hilton and I’m thinking, dude, he wouldn’t pull me over in front of a posh hotel. That would be bad for business. All of a sudden, I notice, the places is fucking swarming with cops. Turned out, the Hilton was hosting a Sheriff’s Convention that night but I took it as a big freakin’ joke on me by the universe. Delivering toothpaste down the street. I should have known it was a setup.

So I’m all paranoid and freaked out, and sure that anyone who sees me will know I’m in an altered state. The valet comes up and gives me a ticket but I calmly tell her that I’m just dropping off toothpaste for one of their guests. So she reaches out her hand and I hand her the toothpaste and we both kind of stare at it confused, but then she says, “No, uh…I just need the ticket back.” “Oh,” I say. “I’m sorry, it’s been a long day.” Finally my brother comes down and I damn near throw the tube at him and take off, not saying hi or giving him a hug…just shoving the toothpaste at him and saying bye over my shoulder as I run back into my car.

I drove so slowly home, probably looking at my rearview mirror as much as the road in front of me.

The next day, I wanted to take Rie and Eric to brunch. I had told Michael to call me when he got up, but since my phone hadn’t rung, I figured he was still asleep. I didn’t realize I had left my cell in my car. As we were getting into the car, I heard my phone ring. It was my mom. My super hysterical mom.

“Did you know your brother’s walking to your house right now?”

“WHAT?!?”

“I just called him to see what he’s doing and he said he’s walking to your house.”

“WHAT?!?”

“WHY IS HE WALKING TO YOUR HOUSE???”

“I joked with him that he could yesterday.”

“YOU BETTER GO GET HIM!”

I think it’s funny but I’m also panicking. I call him on his cell.

“Uh, Michael….where are you?”

“I’m walking to your house.”

“Why didn’t you call me?”

“I did. I left three messages.”

Oh crap, I’m such a bad sister.

“I’m coming to pick you up now, okay?”

“Okay.”

Then something disturbing occurs to me.

“Are you walking in the right direction?”

“Don’t know.”

“Okay, are there any restaurants or places around you you can tell me the name of?”

“No.”

“Do you see any street signs?”

“Curson.”

Curson? I think that’s in Beverly Hills?

“Okay Michael, stop walking, I’m going to pick you up.”

I put in Curson in my GPS and it says it’s 4 miles away. I check my cellphone and realize his last call to me was an hour and forty minutes earlier. I start to panic. I call him back.

“Michael, what’s the cross street?”

It takes him some time, then finally…

“Wilshire.”

Christ, he’s walking into the heart of the city, in completely the wrong direction.

“Do you see any people you can ask for direction?”

“I see a Ralph’s. And an Ihop.”

“Okay, go into the Ihop and stay put, okay? I’m on my way.”

At this point I’m pretty sure that Rie and Eric think I’m an awful sister and a retard since it’s turned into a rescue mission because I’d joked with my brother to walk home the day before. I GSP Ihop and the next one indeed is 4 miles away. I call them just to check the cross street, that it’s close to Curson. I call the guy and ask, then ask him if there’s a large Asian man who looks slightly lost. He keeps asking me, “What?” but I hear Michael in the background coughing so I tell him, “Nevermind” and hang up. It felt good that at least I knew where my brother was.

I hit every red light and was so mad. I was trying to get to my baby brother! Finally, we found the Ihop and Eric jumped out to get Michael. He had his suitcase and a shopping bag with his stuffed dolphins and I felt miserable that he’d walked halfway across the city like that. If my mom hadn’t called me and we’d given him another hour, he would have hit Koreatown from Century City. That’s so fucked up.

I took them to Toast on 3rd St. where everyone working and eating there is an actor or industry type of some sort, but the food is good. I introduced Eric and Rie to red velvet cake, which I’d been craving. They left for Coachella shortly afterwards.

Later that night, we picked up our mom and went to Orris on Sawtelle in West LA, a Japanese tapas place I’ve been reading a lot about on Chowhound. We had a one hour wait so we browsed the stores on the stree
t. I tried on a top and came out of the dressing room and asked my brother how it looked. He’s known for giving very straightforward answers. “You’re asking me because you would want me to tell you if you looked fat, right?” he asked. I started laughing.

“Definitely,” I told him, thinking crap. I must look fat. “You don’t look fat at all. You look great,” he said.

Poor kid. I think my mom gives him such a hard time about “being fat” that so much of his head revolves around that. I’ve been trying to get her to change her outlook, to not make it about all things revolving around fat (ie “Don’t eat that because it’s fattening,” “You need to lose weight”), but about healthier living (ie “Fried foods aren’t as healthy” “Exercise is good for our health because it’ll make us feel better”). I don’t want my brother to feel bad because he’s overweight, much of it he can’t help because of what his medication does to his metabolism. I want him to feel encouraged to make positive choices and confident in being able to take good care of himself.

I offered to take our bags back to the car and when I walked by this karaoke bar, the security guy watched me walk by and said, “You’re awfully happy.” I laugh and tell him, “I’m just a happy person.” Lately, I definitely have been. Though I suspect most people would also be happy if they didn’t have a job. I also credit B vitamins for turning me from a moody tweaker always on the verge of an anxiety attack, to a people-loving hippie.

Orris was good though not mindblowing. The tuna tartare on endive dish was probably the best, while the sauteed scallops were good. The fried stuffed squash blossoms were interesting if not a little greasy, while the fried chicken with curry dipping sauce was…fried chicken with curry-infused dipping sauce. Nothing spectacular. We got some fried anchovies that I suspect none of us liked but we felt obligated to semi-finish, and the quail was savory but again, not mindblowing. I equate it to what a Bruckheimer movie secretly is to me. I enjoy it while I’m there, but two weeks later, I can’t tell you anything about it. I also get a little bored with the fried tempura style of several of the dishes.

Speaking of fried foods, I do have to give a shout out to Kyochon for Korean-style fried chicken. They’re known for frying the chicken first in oil, then in butter, which makes their food the queen sluts of all sluts. I usually order their wings which are overpriced but unbelievable. They offer original and spicy, and while I love all things spicy, their spicy version is a bit like the sauce for sweet & sour pork which I hate, so I highly recommend the original which is crispy and garlicky with just the right hint of sweetness. Extremely addictive and they will put you in a fetal position with guilt if you’re on a diet.

Sunday night was a crowded house with my family at my place and Eric and Rie returning from Coachella, dirty and full of stories about camping in the dessert and Prince. Eric almost caught a sweat towel that Prince threw but was knocked down by someone lunging. I told him he needed to learn how to box out. You bend your knees and stick out your ass, I told him. If you’d done that, Rie would be having her way with that towel right now.

We stayed up talking on my front balcony, the one that faces the Mormon Temple. We realized that the statue at the top points in the direction of the Scientology complex, and maybe this is a big war between religions. Considering the area around the Mormon Temple is well-kept, safe and upscale while the Scientology complex is in the middle of a crack jungle, I would say the Mormon’s are winning. I’m glad I’m behind their lines. I do have to tell you that the thing looks like a radio tower though. The way they looked in 1950’s sci-fi depictions. I’m pretty sure they’re trying or are actually getting communication from god or whatever greater being is out there. I spend many nights sitting out there, staring at that thing, wondering what actually goes on in that building.

Rie and Eric took off the next day after lunch and homemade ice cream treats at Milk. I am still in pursuit of a 4-pack, but ever since a Chinese guy told me that it’s very hard for Chinese people to get stomach definition, I’ve been struggling with focus. Had another great day with my family including a nice “miss you guys” email from my dad, and my mom left the next day.

There’s talk again about me moving to San Francisco. My dad found a condo in the city he wants me to look at, which I’ll do next week before I head to London. I’m still not willing to give up my home in LA though. That night, sitting on the balcony with Eric and Rie, looking out at the temple and laughing and feeling good, I realized that this place is my castle. However I feel about religion, at night, that temple is lit up like a piece of art, a symbol of hope and inspiration, and in my gut, I know that living so close to it in such a safe, peaceful environment is a huge factor in my ability to have overcome the demons of my past and become the person I am today. I’m willing to share it’s beauty with others I trust, but I’m not willing to give it up. I’m hoping I can find a way to have the situation I would like, to keep this as my home base, my energy source, while still being able to live part-time in other places so that I can expand my horizons and social circle while gaining life experience. This is what I hope for.

http://www.npr.org/templates/story/story.php?storyId=6063982

Are you kidding me?

The night before Christmas Eve, Michael threw a tantrum in the parking lot of a grocery store in Fremont because he was hungry. Anyone who knows someone with autism, they know that they have occasional tantrums that include irrational screaming, cursing, and sometimes aggressive behavior (hitting, throwing objects). These tantrums can be very rare in high functioning people like Michael, but given the right circumstances, if the autistic person’s mind gets “locked,” they will feel backed in a corner mentally and the ensuing episode can be likened to that of a trapped animal — they are fighting for their lives, rationally or not. The tantrums usually last for a few minutes, with the beginning being the most intense when you’re not sure of the level of aggression the tantrum will feature, whether he will be screaming/cussing only, or if he will swing at you. The major things that need to be controlled to mollify the tantrum are 1. Noice Level (people talking, loud noises, and 2. Eye contact. You can not make eye contact or the tantrum will escalate. You have to pretend you don’t notice him. The cycle of a tantrum begins with him yelling and cussing, daring people to look at him. But if you do look at him or say anything to him, it escalates the tantrum even more so it’s a really wicked cycle. The hardest thing to control are strangers. Crowds will look, which will escalate the tantrum and draw it out longer. It’s much easier to handle for us in private than in public, where the circumstances usually cause the tantrum to escalate, and we can’t give him his space to cool down because we are trying to shorten the scene.

In this instance, the parking lot was fairly empty, though cars would come and go for last minute shopping. My mom went to talk to Michael while Reggie and I took each side, blocking his eyeline so he couldn’t make eye contact with other people. If he sees them, he’ll usually flip them off and ask them what they’re looking at, and with the wrong person, you have a confrontation (a young punk at a movie theater trying to prove something to his hoochie girlfriend once stepped up and tried to pick a fight, and that resulted in the police coming out). Anyone who drove up and tried to look, we intercepted and explained that Michael was autistic and to please not look at him. I talked to the manager of the store who had come out and I explained that this was a tantrum cycle–it starts with cussing, etc., and usually ends up with him crying because he’s embarrassed and doesn’t understand what happened and why he couldn’t control himself. At that moment, a car alarm nearby went off and Michael yelled, “Shut up!” The manager laughed and said, “Did he just tell the car alarm to shut up?” I said, yeah, people with autism don’t like loud noises. The guy was cool and said Merry Christmas and walked back into the store and most people were understanding and just walked away. There was one old lady who drove up, and by then, Michael had calmed down and was just talking heatedly with my mom. She got on her cellphone and Reggie thought she might be calling the police, but when we got close to her, she dropped her voice and started talking about “dinner.”
My mom finally talked Michael down and we got back in the car.

Usually after a tantrum, we don’t speak and we wait for him to talk about it. He usually needs time and space to gather his understanding of what happened. We got home, took the groceries upstairs and started dinner, while Michael gathered himself in the car.

Michael finally came upstairs, super contrite, and I went to change. I heard a loud thump which I didn’t think anything of, but when I came out about two minutes later, there were a couple of cops standing in our entryway. Apparently, that old lady had been calling the cops, and thinking that it was a domestic dispute, they traced our license plate and showed up at our house.

I missed the bulk of what happened–the cops had rang our doorbell, Michael had answered it and when he saw they were cops, he had tried to slam the door on them. The cop blocked the door (thus the THUMP) and yelled, “You can’t close the door on the police!” Michael ran away. Luckily, Reggie and my mom had run in and blocked the police as they tried to chase after him, yelling that Michael’s autistic and afraid of policemen. The police stopped in their tracks and said they had gotten a call about a man threatening his wife. Reggie explained that it was Michael throwing a tantrum and my mom was calming him down. My mom said they were welcome to talk to Michael to show him that the cops are his friends, but when he yelled, “Michael? You wanna come talk to us?” Michael screamed, “Nooo! Go away!” Reggie and I kind of laughed about it like, “haha…well…this is what we deal with” to make it seem like this was routine and no big deal. They were nice about it, saying how hard our house was to find and how they had gotten lost going down the wrong street. As they walked out the door, they yelled, “Merry Christmas Michael!” and Michael yelled, “FUCK YOU.” We all laughed, wished them a Merry Christmas, and closed the door.

We were scared shitless.

The tantrums are hard to explain, and can be scary if you’ve never seen one and don’t know they are short-lived and non-violent with the right type of handling. If he does hit anyone, it’s usually one of us, because he’s a coward and knows we won’t hit back in public. Michael is also a big guy, and when he throws one, most people don’t understand and can get scared. This has been a great burden on our family, and something that keeps me up a lot of nights. I don’t understand why Michael has never thrown a tantrum when he’s in LA with us, but he’s like an emotional landmine when he’s with my parents. My greatest fear in life is those confrontations with the police. The first thing we do when he has a tantrum is surround him, and we explain to people that he’s autistic, and he’s just throwing a tantrum. A handful of times, a security guard has come over or the police have arrived, but they have been mostly understanding, and Michael usually runs away from them, apologizing later. But I worry about the wrong police officer showing up, the one that’s trigger-happy. Michael’s tantrum behavior is completely irrational and verbally aggressive. Michael is always carrying something in his hand, be it his keys, his toy cars or his toy airplanes. All it takes is for him to have something in his hand to justify a police shooting, and for them to say that they thought he had a gun.

The scariest thing about that night was that we had left Michael alone in the car to cool off and think. I didn’t go change until he had finally come upstairs, and I heard that THUMP about two minutes later. If those officers hadn’t gotten lost trying to find our house, they would have probably arrived while Michael was still alone in the car and confronted him there. No one would have been there to explain to him that he’s autistic and unarmed, outside of toys in his hands. Who knows what would have happened, because Michael would have freaked out, being trapped in the car with nowhere to run, and acted irrationally. I still stay up late, wondering if I would have heard pops instead of a thump that night while I was changing. It really, really terrifies me.

My mom says each time gets closer and closer. I really don’t know what to do. I’m trying to move him to LA, not knowing if I can handle having him here, or what he’s going to do to fill his days–all I know is he’s NEVER thrown a tantrum here without his parents around and that’s the only hope I have. But what if he throws a tantrum down here? What will that mean? And what will happen, knowing that LAPD is so much more reactive than
the police back home? We know that if he’s in the middle of a tantrum and the police come, we have to take him down and pin him just to show that he’s subdued, which is so fucked up but the only thing we can think of to make sure that the police don’t do anything stupid. But what if we’re not there?

I spend so much of my time looking up specialists, researching his medications and trying to figure out the best way to work with him to allow him to bypass the impulse to throw a tantrum. Every time he comes down here and does so well, I hear about him throwing at tantrum at home. I don’t want him to get killed by the police. Knowing my parents, they’ll jump in the way and get killed, too. Will moving him away from home, away from his past and his emotional scars be the answer? Do his medications help or hurt? Where is the answer for this so I can sleep at night?

Today is my birthday and I got an email from Macy’s Online that said, “For your birthday, FREE SH….” (apparently the subject line was too long to display). I was hoping that it said “free shit” but it turned out to be “free shipping.”

I had a dream last night that I went back to college to walk around and I walked into this room that looked like some A/V Club’s lair. Lots of techie/geeky stuff laying around as well as personal items. I started leaving notes for one of the guys on his desk, telling him I was in love with him and had been watching him from afar for a while, and we started leaving notes back and forth. I could tell he was surprised but really into it, wanting to meet me, but to me, it was a joke and I kept stringing him along. One day, I walked in and left a note and as I walked towards the door, he stepped into the frame, catching me red-handed. He was this really tall guy with red hair, about 6’3, bulky in that he’d be considered straight up fat if he weren’t so tall. He really wasn’t attractive, looked like he wasn’t the most hygienic person and didn’t have much of a sense of humor. So he looks me dead in the eye and says, “So you’re the one.” And I’m thinking, oh crap, this was all a joke and now I’m being confronted. Plus, he was blocking the door. So I’m blubbering because I’m caught and this was all a cruel, awful joke I was playing on the poor guy, when I realize he’s Kevin Ray Underwood. And I’m thinking, he’s basically a guy who’s really sensitive and not that socially adjusted, but also has the potential to be seriously violent if he feels he’s been humiliated, so I’m freaking out. I’m looking at him like, can I pretend convincingly enough that I’m someone who’s been into him to get myself out of the room, and even if I can, if I try to disappear, is he going to stalk me? I’m trying to act like I was really into him even though I’m shy and embarrassed now but I can tell that he’s looking at me and he knows that I’m scared of him and not into him like all my letters have said. So I can tell he’s getting suspicious and a little angry, and I’m blubbering because I’m scared of him and trapped in a room and I know he’s going to kill me or seriously hurt me when he realizes I was playing a cruel joke on him. I woke up just as I was half-apologizing/half-begging for him to understand that it was just a stupid, stupid mistake I made that wasn’t funny at all and begging for him to forgive me.

I think this dream was spawned by an exchange I had with Brian late last night, when I said, “Hey Brian, my bologna has a first name.” And he said, “O-S-C-A-R?” And I said, “No. Kevin.”

*****
Last weekend Michael graduated. He goes to a school for kids with special needs, and they graduate the year they turn 22. The graduation was held on the basketball court of the school with all the chairs from the classrooms and offices pulled together for the audience to sit on. There were 5 kids graduating, 3 from Michael’s class and 2 from another, with varying levels of functionality. The kids put on some skits that were written by one of the students (one of them was titled “The Frustrated Corpse,” a detective murder mystery narrated by the corpse) which were surprisingly good and not worse or less developed than skits put on by normal high school students. Michael’s teacher, in his speech, described Michael as the “Alex P. Keaton of Room 18, the businessman of the class.” I got a kick out of that. Michael and one of his graduating classmates had each prepared a speech, but when they were asked to go up, they both refused to go first. The teacher asked Michael if he wanted to go first and Michael said no, so he asked the othe girl who said no, so he asked Michael again who growled at him, so he asked the girl who said, “No, have Michael go first.” Finally, he made the girl go up first and she spent nearly her entire speech thanking God and assigning him adjectives. It was kind of sweet though, the power and conviction of her faith. Michael still wouldn’t go up so his teacher offered to read his speech for him.

The teacher started off reading, “Hello, my name is Michael J. Shih” and one of the kids yelled (very seriously), “YOU’RE NOT MICHAEL SHIH!” Halfway through the speech, Michael went up and read the speech over his teacher’s shoulder.

They opened up the floor to the students who had parting words for their graduating classmates. One girl stood up and said, “I’m really going to miss you guys now that you’re graduating…but I’m glad you’re leaving.” Another kid told this girl, Frances, that he was going to miss her even though she once threw him into a wall. He steamrolled over teachers trying to shush him as he described the incident and informed her that he was still going to miss her despite that. Overall though, many students had very nice, sentimental parting words for their classmates. After a while, the same kids kept raising their hands so they ended the ceremony and proceeded to the BBQ.

I’ll tell you, Michael is a lucky kid because he has a family that is supportive and protective of him, and also, has the financial means to support him and give him the care he needs. There was one kid, a really interesting character and nice kid, even though he rapid-fires questions that cause conversations with him to go in a circle [ie one 1 minute conversation I had with him:

who are you?
I’m Michael’s-
Why are you Michael’s mother?
I’m actually Michael’s sister.
What color is that smoke?
I’d say gray or–
What color is that tree?
Oh I’d say–
Do you know how I turned on the grill–?
I suppose, uh–
I turned a knob. Why are you Michael’s sister? ]

My mom told me this kid’s father wasn’t around and his mother had died when he was young so he was raised by his grandmother who looked to be in her 70s, wheelchair-bound and very feeble. There really wouldn’t be anyone to take care of him, especially now that his grandmother was so old. Near the end of the BBQ, he beelined over to me from across the entire school where I was on the basketball courts playing basketball. He walked right through the middle of the game and said to me, “Before you leave, I want to do this.” He clasped both hands tightly and shook them. At first I was confused because he was kinda doing that close to his crotch. I asked him what he meant and he said the exact same thing with the exact same motion, in the exact same location. I asked him, “Shake my hand?” He nodded. I told him, “I’ll shake your hand right now!” He smiled so broadly it lit up his entire face and shook my hand enthusiastically. That made me feel really good.

With most graduations, there’s this electricity in the air, a feeling of excitement, of all the possibilities that could be in the future of these kids set free into the great wide open. With this graduation, it seemed like everyone was proud of the graduates, but underneath was the unspoken question of, “What’s going to happen to them?” It’s very bittersweet.

As for Michael, he’s going to be working at my parents company doing data entry while we look for some kinds of classes he can take that can teach him work skills. We’re trying to cut back on his medications to see if that can give him a better balance, and hopefully, as he matures and gains independence, with the right guidance and structure, he can succeed within his individual potential in life and attain a satisfactory level of autonomy.

My goal is to become financially stable enough to afford a place for him in LA, and perhaps start some kind of company where he can do simple tasks that would occupy his day and give him a sense of achievement. I would like my parents to move down here permanently too in order to keep him close, because I really do worry about his health and think it
would help his development to be around peers more instead of his parents and other symbols of authority all the time.

My mom’s dream is that one day, Michael will be able to get married and have kids. I would like to see that happen as well, but that’s something that will come if it’s there. We can’t push it. The best we can do is help Michael develop within himself, to raise his self-esteem and guide him through his quest for independence, help him and protect him when he hits one of the limitations of his disability, and ultimately give him unconditional love in hopes that he lives a happy, uncompromised life.

It’s an exciting time and a scary time. It’s all very bittersweet.

http://www.latimes.com/news/local/la-me-shooting1nov01,0,5728150.story?coll=la-home-headlines

What I worry most is that this will spawn a backlash against people with Asperger’s or spawn mass ignorance. It sounded like this kid had some emotional problems that was, if not created by his condition, it was definitely aggravated by it as people with Asperger’s will want to interact socially but their skills are so off that they can’t seem to have solid relationships the way they see everyone else relating.

It reminds me of that story about King Midas, how everything he touched turned to gold. Imagine when he starts turning the people around him to gold, then he realizes that no matter how much he tries to reach out, it only makes him more and more isolated and lonely.

My brother has Asperger’s and anyone who has met him knows how desperately social he is. He’ll talk to anyone anywhere. I think when he was growing up, his condition was looked upon with such shame and fear of judgment by my parents that they were always desperately trying to change him or keep him out of situations where he would be judged or compared to other “normal” kids. I was always told that if anyone asked, to just say he’s hyper and act like there was nothing wrong. But I think it wore on him because he could feel that nothing he did was right or good enough, and he didn’t have any friends outside of really young kids who didn’t know that he was “different.” His desperation for friends grew to the point that he started telling anyone (random strangers included) “I love you” because he wanted that closeness.

We used to follow him around the gym because he would go and hug all the trainers and employees. It was awful on so many levels, to see how desperate he was to be loved and to see how uncomfortable the people could be or sometimes, downright mean. The only times I fly off the handle and get really crazy mad is when I see people making fun of him behind his back. On the other hand, there are those really kind people who are always nice and patient with him, and it brings you to near tears when you see how kind they are to him. It’s a humbling experience, when with each interaction, you pray that people will be kind, and I hate that it’s like that. I hate how mad he gets when people like his cousins say they’ll come over and play with them, then stand him up because they have better things to do. I hate that I know he’s so lonely, but he doesn’t have many friends.

He was just here this weekend and I can see a world of difference in him. Over the years, his social skills have improved and his emotional scars have gotten better as we build his self-esteem. I am especially thankful to my friends who treat him very well and interact with him on a peer level. This has done wonders for him because he feels like an adult here, and that he can be valued based on his level of interaction rather than being automatically dismissed and looked down upon. His negotiation skills have improved exponentially as we’ve taught him how to communicate the things he wants and negotiate, giving him an environment where he is validated and his ideas and feelings are respected. I truly believe that he could achieve a level of independent one day as he’s much higher functioning than most of the other kids at his school, but the next hurdles are to give him solid vocational skills and find him employment so he feels that he has a purpose, and help him build friendships outside of me and my friends.

Eventually I would like him to live close to me. He graduates next February and we have to figure out his next step. It upsets me a lot that I’m not in a financial place where I can get him a place and a full-time caretaker to assist him during this transition. I’m really hoping that with all the things I have going, that I can get to the place where I can afford to take care of him. I think he would mature more quickly if he could be in a consistent environment where he felt he was perceived as an independent adult the way he wants to be seen. I think it’s hard for him to go from staying with me, where we tell him he’s responsible for himself for better or for worse, to going home where he feels like he’s a child. Even if my parents aren’t treating him that way, I think it’s the natural developmental conflict where the child has to truly feel that they are autonomous before returning to the parent-child relationship feeling that they are truly peers.

The first thing though, is to deal with his medication. He’s been on all kinds of crazy medication since he was young that made him gain weight and have raised his blood pressure to levels of middle-aged stock brokers’. Now he’s got problems with his kidneys and they put him on more medication for that. It seems like they keep adding medication to treat the side effects of the first medications, and from my own experience with meds, once your body gets dependent on them and you miss taking them, you get pretty crazy and it turns into a really bad force in your life that you have to contend with.

I really worry about all this stuff so much. It scares me more than anything the thought of living without my brother.

6.4.05

He was calm by the time I found him, standing in front of the door to our building as though I hadn’t spent the last hour frantically searching the city for him. He was calm by this time and just wanted to show me the little blue toy car he had bought. We started walking across the street together but I could feel the eyes of the neighbors hot on the back of my neck, their smugness, eagerly anticipating the public discipline I was expected to dole out as restitution for his tantrum. I wasn’t going to give them the satisfaction, those fuckers who believe in a social system where strangers have the right to berate other people’s children for perceived insolence.

Still, I was angry, fueled by the prolonged panic of not being able to find him, of losing him permanently, my only ally. He was talking to me timidly, eyes cast down; I could see that he hoped I wouldn’t bring up his earlier tantrum, what happens when he gets cornered in his brain and wires short-circuit. But I couldn’t control myself. I told him that someday he would go to prison, that someday he would meet a cop who would be happy to shoot a six-foot 220 lb. Asian kid who was acting irrationally, dangerously, screaming and waving his fists at passing strangers. He tried to have a civil conversation, sidestepping the bait but I persisted, relentlessly painting a standoff that escalates into violent inevitability, until it scares him the way it scares me and he explodes. He’s screaming at me, that he’s never going to go to prison because he won’t let them. I can see the scene unfolding in my mind, some trigger happy patrolman looking for stress relief, pulling the plug on a cornered animal exuding potential violence who won’t stop screaming in the middle of the street. It seems too possible of a reality to shake out of my head. I tell him I’m his only friend and he had better listen to me, that there are consequences and he has to learn to control himself. (Or else? I can’t stop thinking about it. Him laying in a black pool of blood that won’t stop spreading…because they don’t understand, they don’t understand that God speaks through him. And I know I’ve just been cruel). He tells me he hates them, he hates me. So I punch him. And leave.

When I get home I get his mom on the phone. I tell her she has to come home now, there’s been trouble. I make my voice cold so she knows that I blame her, that I want it to tear up her insides too, that I blame her for not being there. She hangs up; I look out the window. I see he has reached the street corner, stepping tentatively, looking at both possibilities of directions to cross. 36 more seconds before one light turns red and another turns green. Reckless scooters zip by, dangerously close. He contemplates, uncertain, frightened. I am not there for him.

I hold my breath until he’s made it safely across the street. Inside, I keep telling myself, robots don’t cry.

Weekend Recap

So Michael went home yesterday and I was very sad.

It’s incredibly exhausting to have him here (10 days this time) because he needs a lot of attention in that he’s always talking to me. He’ll follow me around the house about a foot behind me, usually running into me if I stop too suddenly, and he’ll be telling me all about cars he wants, the MSRP’s, the options, where the dealers are located, what the gas mileage is, etc. Keep in mind, this is the same conversation that happens over and over and over throughout the entire day, every day. I’ll be going from room to room picking things up and he’ll follow right behind me from room to room, not missing a beat with his spiel. Sometimes, I’ll pick up the phone and pretend I’m calling 911 and I’ll say, “911? There is a strange, Asian man following me around…”
And then Michael will laugh and say, “Julia…” and then continue on about whether Bose is a standard stereo system in that particular car.

And then when Michael is gone, it’s so quiet and the house feels empty. :(

On Saturday we had a yard sale by Rebecca’s house. We discovered that 80% of people who showed up were driving minivans.

It’s funny how you can be selling something for $1, like a DVD for example, and people will still try to bargain you down to 50 cents. Kate had brought donuts and we had a lot left, so we decided to put up a sign saying donuts for sale for 25 cents. With the way yard-sale bargaining worked, I was surprised nobody suggested that we pay them to take a donut.

I took Michael to the psycho-hypnotist in the afternoon. He wanted to work on anger management so she runs through the evaluation then puts him under. She let me watch and it was really cool because I saw him go under. She suggested to him that he wouldn’t throw tantrums anymore because he would remember that he’s a controlled, powerful man who would be able to successfully negotiate things whenever someone told him “No,” rather than get angry. So she gives him suggestions for 15 minutes about anger control and staying calm, and when he comes out he says he feels good and he thinks it was going to work. So I pay her the $125 session fee, and we leave. Michael says, “Julia, let’s practice. Can I come visit you in LA? You say no.” So I say, “No.” He shrugs and cheerfully says, “Okay! See? It worked!”

So we get outside and he asks me if I can go to Panda Express which is down the street. I say no because it’s not healthy. He looks at me like I’m joking and I say, we just went and bought groceries. I’ll go home and make us sandwiches. So he says he wants to go to Panda Express and I say no, and then he raises his fist to threaten me. Keep in mind, we’re still standing on the sidewalk outside the doctor’s office where I just spent a hundred and twenty-five dollars. So I guess that didn’t work.

No one informed me about daylight savings time. I showed up for an appt on Sunday exactly an hour late. Okay, an hour and 10 minutes late.

I’ve been having an aversion to blogging about what’s on the news. I figure you all already know what’s going on every day since media is everywhere. Why have it on my blog as well.

I made a variation of quiche on Saturday night. Had an assist from lengli (who also provided this awesome link of rap lyrics translated). It was somewhat like an Argentinian Tortilla de Papa.

I took two large potatoes and peeled them, then cut them into thin strips, about the thickness of McDonald’s french fries but half their length. I poured olive oil over them and made sure they were evenly covered. I browned them in a pan with rosemary, thyme, savory, basil, oregano and salt and pepper, leaving the cover on. In the last 5 minutes, I threw in half an onion (chopped into thin slivers) cooking them under the cover with the potatoes to soften them and to take off their edge. When they were soft, I lined the bottom of a baking dish with the potatoes and onions.

For the filling, I mixed 5 egg white whites with 5 whole eggs, along with 1 1/2 cups of skim milk, 3/4 cups of shredded cheddar, 3/4 cups of mozzarella, 3/4 cups of diced turkey breast (lunch meat), 2 stems of asparagus sliced into thin disks, 1/2 cup of finely chopped green onions, a little bit of fresh basil (cut into thin strips) and a dash of garlic powder.

I beat this mixture with a whisk until it was frothy, then poured it over the potatoes. I baked it for 40 minutes at 350.

It came out quite tasty. We finished off the meal with some Dreyer’s Samoa Grand Light ice cream, based on the Girl Scout Cookie.

I wanted to watch So I Married an Axe Murderer after the movie since I got that Phil Hartman line in my head about being called Vicki (also courtesy of lengli) but we opted for Zoolander instead. I was so happy when they finally saved the Prime Rib of Propecia.

I’m finding that I’m starting to formulate my sentences like Michael. And last but not least, I should probably get to work at 9:37AM April 4th, 2005.

The Truth About Appliances

I’m grumpy when I wake up. It can’t be helped.

Today:

Michael: Do you want the heater on or off?
Me: I want it up my ass.
Michael: No Julia, it’s too big.

here’s the closest I’ve ever come to explaining what it was like growing up, that black hole I carry with me that I don’t know how to get rid of.

michael

when my brother rages
his face fills with blood and
his mouth snaps open
erupting
a high pitched scream
like an animal with its hind leg clenched
between the unflinching jaws of a steel-toothed trap

i restrain him by sitting on
his frail flailing body
feeling his primal fear twist and
claw against my overwhelming weight
as if subduing a six year old
whose brain will eternally reflect
only a small fraction of his age is
some heroic feat to be proud of

someone once asked me why we don’t put him in chains

i told her i would go home and ask my dad
but instead went straight to bed and prayed that
her parents would die in a violent accident
so that she too could know what it is to be helpless and flawed
in an thunderous world that turns a deaf ear to the tiniest voices

Favorite Michael Stories

Someone recently wrote me and asked me to compile stories about my brother. I can’t remember them all because I did a lot of drugs in the 60s and mostly, because he creates anecdotes so often, that I can’t remember them all. So here are a few of my favorites, but if you remember some, remind me and I’ll elaborate. Someday, I’m really going to write a book about him.

Car Alarms Are Really Sensitive

My mom is very conservative and does her best to shelter my brother from “getting the wrong idea” about things. So obviously, the subject of homosexuality is quite taboo. Last year, my mom and brother came down to Los Angeles to spend Thanksgiving with my friends and I. After dinner, we all kicked back and watched the O.C. In this episode, the son goes to his dad’s dealership with his friend to say hi to his dad. Unfortunately, when they show up, they catch his dad in the middle of a lover’s tryst with his business partner…another man. So on screen, the boys walk in just in time to see the dad grab his partner’s head and begin making out. Everyone in the room goes silent, afraid to move, painfully conscious of my mom and my brother.

So the men on TV start mugging down and Michael says, incredulously, “Are they…gay?” No one is brave enough to say anything.

Michael, in an attempt to dissociate, says, “Maybe not.” As the men are still mugging down.

Then he asks again, “Are they…gay?” No response.

Finally, the son freaks out and runs out of the dealership, but accidentally stumbles against a car, setting off the car alarm. The dad sees his son and yells, “WAIT!” and chases after him. Cut to commercial.

All of us sit quietly, not moving, enjoying a lovely awkward silence while I’m frantically trying to formulate some answer in my head that starts with, “You see Michael…when a man loves another man…”

But instead, my brother turns to me, wide-eyed, and says, “Boy Julia…car alarms are really sensitive!”

And that’s all he had to say about the scene.

Michael and the Good Poo

The first time I brought this one boyfriend home, my brother took it upon himself to explain everything about our house and our routines in as much detail as possible. At one point, he leads my boyfriend into the kitchen and points to a plate of sliced cantaloupe. “We eat cantaloupe every morning because it’s digestible and let’s you have good poo.” Hmm. Thanks, Michael.

Michael and the Preacher

At my grandfather’s funeral, all the adults sat in the main area, and the kids were cordoned off to sit in this side area, only visible to the preacher. I was assigned to the kids area to keep an eye on the kids (mostly just Michael) and to make sure they behaved. My brother kept wanting to talk to his cousins and the preacher kept looking over, glaring at us. Finally, he looked over and went, “Shhh.” And in no time flat, my brother has his hand in the air, middle finger extended, and is flipping off the preacher.

Michael and Urethra

Once when I went was up north, I got a call from my friend Urethra* (not her real name). She asked me, “Julia, are you on IM right now?” No, I say. I’m in my car. “So you weren’t just IMing with me.” Nope, I tell her. I probably left it on at home. Apparently, she was IMing me for advice about a relationship, and my brother started answering. She thought something was wrong when I kept writing back one word answers in ALL CAPS, but the clincher was when she laid out the situation that she was worried about and asked me what I thought, I wrote back, “DON’T WORRY. YOU’RE NOT FAT AT ALL.” Obviously, this had nothing to do with what she was talking about.

Michael and My Mother’s Drinking Problem

Lauren and I took Michael to get ice cream one day. I saw him scratch himself in a manly place and I shot a look at him and he quickly retracted his hand, saying, “Oops! I know I’m not supposed to do that in public.” Then he quickly turns to Lauren and says, “Lauren…”

I think he’s going to tell her that his mother tells him he’s not allowed to scratch himself in public so I try to head him off by saying, “MICHAEL.”

He immediately gets defensive and says right back to me, “JULIA. …. Lauren…”

I say, “Michael. Don’t say it.”

He says, “I’m NOT. Lauren…”

I say: “Michael! Do NOT say anything inappropriate!”

He says: “JULIA! I’m NOT going to say anything inappropriate.”

Then he turns to Lauren and says, “Lauren…my mother has a drinking problem.”

Holy FUCK.

He meant that my mom dribbles when she drinks out of a glass.

Michael and the Mango

When my mom, brother and I went to Mexico last year, they both bought these mangos speared on 3 ft. sticks. My mom was sitting down with the stick propped straight up, so she looked like a queen sitting nobly, with a staff. So I wanted to take a picture of her but Michael wanted to be in the picture. I told him he couldn’t. So he got huffy and moved away. I should have known that Michael would be determined to be in the picture in some way, because as I looked in the viewfinder of the camera and centered the picture, I saw this hand with a mango stick slooooowly creep into the bottom right of the picture.

Michael Says No to Lesbians

I was once bored and told my brother that his mom was a lesbian. I told him that if he didn’t believe me, to call his dad and ask. So he calls my dad and says, “Is mom a lesbian?” My dad says, “Yes.” Michael just says, “Ooooh” and doesn’t bring it up again. A few days later, Brian was making fun of me and called me a lesbian in front of Michael. And Michael gets upset and says, “JULIA. You can’t be a lesbian. We can’t have two lesbians in the family.”

When Michael was staying with me last year, I had a post it up on the fridge that said, “For July, No More Bullshit.” I was on the phone with a student one night and saw Michael come into my office, write something on a post-it and then leave. A few moments later, Brian came in, put a post-it in front of me saying, “I thought you might like to know what your brother just put up on the fridge.” It said, “For August…No More Sex Life.”

Don’t Touch Michael’s Food

I was home last Halloween and wouldn’t let anyone see my costume until the actual day. I had promised Michael that I would show up for his school Halloween party, so I got dressed up as a Blaxploitation chick (huge fro, big sunglasses, a lot of cleavage and a nose ring) and went to his school. I found him camped out in front of the food table with a plate piled high. I walked up to him and said, “Yo wassup bro, can I get some’a that food?” He discreetly angles his body so that it’s between me and his plate, averts his eyes and says, “No.” I say, “C’mon, man, I’m starvin’ here!” He shakes his head and turns away. I say, “Just give me a bite of that sandwich,” and he turns around and screams, “I SAID NO!!!!” I start cracking up and he realizes it’s me and starts laughing. I say, “Can I have some of your food?” And he says, “No” and walks away.

Okay, so I just talked to the car dealer and worked it all out. Apparently the $1,000 that was paypalled from my mom’s credit card was a deposit for a $40,000 car. Nice… Michael is lucky he’s autistic. Otherwise, he’d be getting a beating when my dad gets home. But I talked to the guy and he said he’d refund the deposit if I just left him some positive feedback, which I just did. While I was on my brother’s account, I noticed that he had bids out on 4 other cars. And a $9,000 CD changer.

Goodness.

These are the dangers of teaching kids about finances using monopoly money. They have no concept of the true value of money.

Brian is out of town tonight but no anonymous sex for me. I’m on hour 11am-12pm of 24 (Season 1). I’ve been watching those dvds for DAYS and I’m not even halfway through.

I’m reading Bridget Jones’s Diary. It’s really funny. I was actually reading it at Starbuck’s last night, but was so tired, I kept falling asleep. But then whenever a customer would laugh or say something loudly at the counter, I would suddenly looking up at them, really alertly and wide-eyed like I was intrigued by their conversation, trying to pretend I wasn’t asleep. The same way you do at school (or, um…work) when you’re trying to look up enough or shift around enough to look like you’re awake and reading so you don’t get into trouble. But every time I did that, I would remember that no one gives a fuck if I’m asleep because I’m not in school (or, um…work). But the funny thing was that the guy sitting next to me must have thought I was awake because every time I looked up, he would try to engage me in conversation. And I would just stare at him blankly because my brain was still asleep. This little program was just what my body has been trained to do, since I’m a pro at falling asleep in places without getting caught.

In other news, my brother has apparently bought a car on Ebay. My mom noticed a paypal charge of $1000 on her credit card last week and mentioned it to me when she picked me up from the airport. I told her that paypal is like a wire transfer and we figured out that it must have been Michael. We questioned him and he said he bought a Mercedes on Ebay. We were like, “A toy or a real car?” A real car, he says. Holy fuck.

I told my mom to prosecute my brother for fraud. Just to scare him. Because he’s got all of our credit card numbers memorized and he’s always using them to buy random things on the internet.

Have a Great Weekend Everyone!!!

Peace. Respect. And don’t set the hamsters on fire.

One More Michael Story

We were walking along a street in Taiwan, window-shopping, helping my mom buy gifts for her coworkers. I was bored as hell so I started pretending that I had an invisible dog on a leash. Anyone who knows me knows that I’m Method with this stuff so in my mind, I really did have a golden retriever on a leash (even though I would have preferred a labrador, but you work with what you’re given). It was an inside joke between my brother and I, made funnier because it embarrassed my mom (she’s a great sport) and it confused the hell out of the people around us. My mom, who had gone into a store, waved at me and said she needed help. So I asked the owner, “Can dogs come in?” He said, “No.” So I tied the “leash” to a metal sign and left my “dog” sitting at the street corner. I said to Michael, “Make sure no one steals my dog.” I was joking. But he takes it REALLY seriously and stood at the door of the store, keeping an eye on my “dog.” Some guy stood right next to where my dog was and lit a cigarette and Michael comes running up to me and whispers, “That guy is smoking RIGHT NEXT TO your dog.” I laugh and say, “That’s okay.” So he goes back to standing by the door, staring at where my dog is and I’m at the counter helping my mom, when we suddenly hear Michael yell, quite ferociously, “WATCH OUT FOR MY SISTER’S DOG!”, scaring the fuck out of some extremely confused old lady who had unwittingly stepped into the space where my imaginary dog was sitting.

Michael Guarding My Imaginary Dog

I’m a Bad Person

One morning while we were in Taiwan, I was going to the gym and my (lazy) brother happily couldn’t go because he had hurt his foot. I asked him if he wanted to go with me just to keep me company and we could get lunch afterwards, and he said yes because he wanted to be with me. I told him he had to buy me coffee first (there’s a cafe next door and he buys me an iced coffee every morning along with an iced tea for himself). Well, he took his sweet time getting ready and I kept telling him I was leaving but he wouldn’t answer me. I thought he was a little too confident in knowing that I wouldn’t really leave without him so I pretended to leave, opening and shutting the front door so he could hear, then hid in the living room. He left the apartment a few minutes later, in no hurry, taking the elevator down. I took the stairs and followed him into the street hiding behind pillars, staying about 10 feet behind him. He went into the cafe to look for me, then came out and walked to the end of the block where he stood looking around for a long time with a stricken look on his face. It was apparent that he couldn’t remember which way the gym was. I watched him walk back inside the cafe and I hid and waited for him to come out. After a while, he came out and instead of looking for the gym or going back upstairs, he came towards me and sat at a bench really close to where I was hiding. I thought he saw me but he hadn’t so I ducked behind a wall. I could see his reflection in a store front. He had a paper bag with him and he took out an ice tea and just sat there drinking it, looking really sad. I started to feel awful so went up to the bench and stood RIGHT behind him, hovering over him until he noticed me. He didn’t jump in surprise like I thought he would. He just kind of looked at me sadly and said, “I thought you left without me.” Then he handed me an iced coffee that he had bought for me anyway, even though as far as he knew, I had already left without him. I felt like such an ASSHOLE.

My baby brother, Michael, likes teddy bears. And so in an effort to teach him social skills, my mom names his bears things like Manners Bear, and Soft-Spoken Bear, and Patience Bear in hopes that they will “teach” him these attributes.

Don’t Take Candy From Naked Strangers Bear
Hide The Kitchen Knives When Daddy’s Been Drinking Bear
Don’t Touch The Dog Like That Bear
Don’t Pick Your Nose At The Dinner Table Bear
Touching Yourself In Public Is A Sin Bear
Be Nice to Grandpa Because He Can Still Change His Will Bear
Help Your Big Sister Find A Rich Boyfriend Bear
You Don’t Need To Know About Sex So Stop Asking About It Bear
Stop Looking At The Naked Men In The Gym Locker Room Bear
Be Kind And Rewind The Porn Tape Bear
Hands Off People’s Bottoms Bear
Mommy and Daddy Don’t Love Each Other Anymore So Stop Crying Bear
Stop Asking “What’s That Smell” Bear
Where On The Bear Did The Bad Man Touch You Bear
Shitting In The Middle Of The Living Room Is Not Okay Bear
Sometimes Men Like To Hug Other Men Instead Of Women And That’s Okay Bear
One Drunken Incident In College Does Not Make Your Sister Gay Bear
Handcuffs Are Not Toys Bear
Don’t Scratch Yourself When You’re Being Baptized In Front Of The Whole Church Bear
Tongues Don’t Go There Bear
Boys Pee Standing Up Bear
Don’t Drop The Soap In The Shower Bear
Being A Male Prostitute For One Week To Pay Some Bills That You Blew On Coke Booze And Gambling Is Okay Bear

More not-working-at-the-office fun. This is between my infamous brother and I. I think he misunderstood my question and thought I said, “do you ever wish I had a girlfriend.”

…awww. I LUVS MY MICHAEL! But you can’t have me. I’m dysfunctional.