Disabled

[I have a lot to write, so I’m going to split this up into a few days. Each day is one page.] 

November 2, 2013

Deep breaths, I told myself. I’ll be okay. Training prepared me. I opened the door and stepped in.

I forget what I noticed first. Maybe it was the girl standing up and moaning, or the tall sandy-haired boy who walked by clapping his hands very loudly. Most likely, though, it was a tall girl on the other side of the room who pointed at me and shouted, “She’s new! I want her help me!”

Thus, I did not gracefully enter into this new world, nor introduce myself shyly as is my habit, nor learn everyone’s name before a handful knew mine. Rather, I was thrust into it, and there I stood, already claimed by the girl who first saw me, whether I was ready for her or not.

No amount of training could have prepared me for what was in store for me though. Cosmo, the girl who called me, spoke with a lisp, so at first it was hard to understand. (Actually, even now, two years later, sometimes I have trouble understanding.) In the following weeks I learned much about her. She had a very defined sense of fashion: among the things she thought were cool were earrings, tank tops, dresses, and braided hair. All were things her parents wouldn’t let her have: they wouldn’t let her pierce her ears, made her wear tshirts and jeans all the time, and kept her hair short. I don’t have pierced ears, but I did start wearing tank tops and braiding my hair on the way to volunteering.

Cosmo loved pointing out when people were matching. Matching meant any articles of clothing that were the same basic color. For example, if I wore navy blue and she wore bright baby blue, she would point out that we were matching. She also had certain number of questions she would ask me just about every week: “What did you eat for lunch today?” “How was school?” and “Do you have a boyfriend?”

She was also very proud, into appearances, and loved attention. She loved it, basked in it, needed it. The first time she started crying, I was very confused as to why, but I let her hug me anyways. Later I found it was her way of getting attention when she felt no one was minding her. Another habit she had when she felt this way was talking on an imaginary phone.

Cosmo liked to plan parties and invite people even though everyone else knew they were never happening. But we indulged in her imagination since it made her happy. A few weeks in, I found that she was actually older than me when she invited me to an “adult-only” party.

“But Cosmo, I’m not an adult yet,” I said.

“Oh…You can come though!”

She really liked Hello Kitty and Disney princesses. She had this tiny Hello Kitty backpack that she bought to school. Once she showed me what was inside: three bracelets, stickers, and a pencil.

Sometimes I would work with other kids, though not as frequently as I did with Cosmo.

Josh was mostly visually impaired, so his hearing was pretty extraordinary. As a matter of fact, I didn’t notice until one of the teachers said, “Josh, I know you can’t see, but I’m going to pop the yolk.” He had a certain problem with the direction “Don’t eat the food before we make it into something” — he liked to put the already edible things into his mouth. He also loved to help take the garbage out. (Seriously. The teachers made it a privilege that kept his behavior in check. He’s one of the few people I know who would behave in order to do work.) He also liked to ask what people’s last names were. Josh, probably partially owing to his stellar auditory sense, had a really good feel for music. He could really name every single song on a teacher’s CD while spinning around and looking like he didn’t know what was going on. He also memorized what track was what song since the teachers fussed with that so much.

Annah had autism. She hated it when people wore their clothes wrong. I liked to tie my sweater around my waist, but for whatever reason she felt uncomfortable with that, so she pulled my sweater off and put in on a chair. Once, Anna (teacher) had a dress with buttons all the way down; she didn’t button the last one. Annah buttoned it for her. When I wore polos and didn’t button the top button, Annah would keep eyeing it until I noticed and buttoned it. She was a very smart girl, and she did everything I told her to do, as long as I said it in Mandarin.

I didn’t get to work with Adrian much; he stopped coming to the program for whatever reason. He was also really smart, just socially awkward (but hey, I am too, so it’s all good). Maybe he stopped coming because he could do everything the teachers wanted him to do.

And then there was Kevin.

Kevin was quite a likeable boy; he tried his best with instructions. One day, though, his medication got changed and he started acting in weird ways. For whatever reason, he was convinced that Auntie Mei was angry at him. No matter how many people tried to reason with him, how many people tried to tell him no, Auntie Mei is perfectly fine with you, he was stuck there. “Auntie Mei is mad at me.” And he got really really upset. Upset to the point where he tried to hit her, pulled off her necklace, and flung it somewhere.

We couldn’t find the necklace. (Later someone found it.) But on that day, Mei was so worried, since the necklace was special. A teacher called Kevin’s mother. She was on BART, she would be on her way. Half an hour later, Kevin’s mom ran in; she was extremely worried. She apologized profusely for what happened, softly reprimanded her son, and left in a hurry.

Mei told me later that day Kevin’s mother’s story. She, when Kevin was ten years old, decided to have another child. This other child was Kevin’s three-year-old little brother. He was recently diagnosed with the exact same disability as Kevin. At the same time all this is happening, Kevin’s maternal grandmother was diagnosed with brain cancer.

And I knew that Kevin would never have another sibling. I knew that his mother would worry about his and his brother’s futures for the rest of her life. I wanted so badly to help her, but I barely knew her, and I couldn’t think of a way how.

That night I prayed. I prayed to a God whose rules I did not understand, a God I did not pray to on a daily basis. But I prayed for this woman, this woman I hardly knew, who was torn between responsibilities and burdened by her own blame, probably for the rest of her life.

My dad once told me people don’t really grow up until they have kids. I suppose people who have disabled kids grow up more.

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