Dr. Ashley
“我的母亲Pamela Wiley在40年前创建了Wiley Center,这个组织服务于来自中低收入水平家庭背景的儿童的语音和语言发展。
‘戏剧大王 (Drama Kings and Queens)’ 是我们在14年前创办的、时长为6周的暑期项目,主要目的是通过音乐戏剧表演去提升自闭症儿童的语言沟通、社交和表演能力。”
“My mother Pamela Wiley started Wiley Center 40 years ago. This is an organization serves kids with developmental delays.
'Drama Kings and Queens‘ is a 6-week summer program we started 14 years ago that aims to help kids develop their communication, social, and acting skills through musical acting. “
“今年我们这个暑期戏剧项目的演出主题叫做 ‘自闭症:长大成人 (ASD: Grown Up),’ 因为我们的孩子们在不断成长,很多不仅去了大学,并且还在参加职业培训。我为他们感到非常骄傲。”
“This year, our show is called ASD: Grown Up because our kids are growing up. We just had our 40 years anniversary, many of our kids not only have gone to college, but also started vocational training. I’m so proud of them.“
“但是这个演出的筹办过程非常艰难。我从去年8月份开始跟各方联系,到今年5月才基本上确定下来,但是场地提供方始终不能确定。今天现场的这一切都是我们在48小时之内布置好的。
“But to make this show happen, it wasn’t easy. We had to prepare everything here today in only 48 hours.“
“为我们患自闭症的孩子们成功找到一个舞台去表演真的非常困难,因为我们总是不被放在第一位去考虑。很多场地给我的回复是 ‘我们这边要拍一个电影,’ 或者 ‘我们这边有另外一群孩子要用场地。’ ”
“It was hard to find a theater space for our kids with autism to perform. The reason why it’s so hard is that people always put it in back burner, ‘Well, we have a movie production,‘ or ‘We have another group of kids.’ ”
“我们的孩子跟其他任何孩子一样,应该享有在舞台上表演的机会。我们的孩子应该享有在舞台上闪光的机会,他们本来就是发光发亮的星星。”
“Our kids deserve to have a theater space just like any other groups of children. Our kids deserve to shine right like the stars as they are.“
“今年我会不懈地工作,我会战斗到底,我要保证明年我们能够尽早通知家长表演的时间地点,而不是只能遗憾地说 ‘真的抱歉,我们现在还不能确定孩子们可以表演的日期。’ ”
“I’m gonna work tirelessly this year. I’m gonna fight and make sure next year we can notify parents early, we’re not gonna say ‘sorry we still don’t know the date for our show.‘ ”
Chad
“我做编舞老师已经有很多年了,但跟这群自闭症孩子相处起来还是很不一样的。你会试着将他们当作正常孩子对待,但是你又得时刻意识到他们是特殊的。”
“I’ve been doing choreography for many years. It’s different working with this group of kids with autism. You try to treat them as normal kids, give them a normal life, but you also always have to be aware that they are special.“
“这些孩子们非常努力。他们会想让你开心,他们想证明 ‘我不是一个问题’ 或者 ‘我不是一个负担。’
没错,他们自己是能感觉到的。”
“These kids work really hard. They want to make you happy. They want to prove that ‘I’m not a problem,‘ or 'I’m not a burden.'
Yes, they can feel that.“
“但是我看到他们唱歌跳舞,就跟正常孩子一样。我很爱这些孩子们。”
"But I saw them sing and dance, just like normal kids. I love these kids. "
“我之前还没看过所有表演的完整版呢,我现在超级激动。”
"I haven’t seen the complete show before. I’m so excited about it. "
Nicholas' Mother
“我在Wiley Center工作,了解到了这个项目,然后才把我儿子送过来的。”
"I work here, for the Wiley Center. That’s how I got to know about this program and sent my son here. "
“大概是在他两岁的时候,我们开始发现他跟其他孩子不太一样。他坐在车上的时候会不停地拍手,他绝对不能面朝后坐,只能朝前。他会不停地哭,并且频繁查看四周。
当时我们周围有很多关于自闭症的讨论,于是我们就开始研究这个东西。我拿他跟我的大儿子比,虽然他们相差14岁,但仍然能感觉到很不对劲。”
"We found out something was special about him when he was 2. He was clapping in the car seat. He can never be rear-facing, only front-facing. And the constant crying. He also tends to see around.
At age 2, there was a lot of talking about autism, so we started to do research. I compare him to my other son, but they were 14 years apart. But still I knew it wasn’t the same. "
“他两岁半的时候开始去学校,就是在普通的学校上正常的课程。只是课堂规模小,不超过10个人。今年他会开始去正常规模的课堂,大概25到30个学生的样子。一开始的时候,人多的话他会被吓到,但是他现在这方面好很多了。”
"He started school 2 and a half years. He goes to a regular school with normal curriculum, but smaller size. This year he is mainstreaming, that means going to school in a normal-sized classroom setting with 25 or 30 kids, instead of just 10. At the beginning, a large crowd would scare him, and he would scream when people watch him. But he’s much better now. "
“我尽我所能做了一切。我们把他送来参加这个戏剧课程,锻炼他的表达能力和正常社交能力,我陪着他完成学校任务,不让他跟其他学生有差距。
他就是个正常的孩子。我们并没有对他区别对待,我们也没有过度保护他。但我们有尽一切努力帮他成长,因为我们觉得这一切都是值得的。”
"I’ve done everything in my power, we send him here for this program, I work with him to get him along with other students.
He’s a normal kid. We don’t treat him differently than normal. We didn’t overprotect him. That did not happen. But we did everything in our power to help him grow. It’s worth it."
Zion's Mother
“这是我的独生子。其实他不是自闭症患者,他有唐氏综合征。
我们送他去学校上课,参加项目,在他性格、行为上进行培养,我们在课外也做很多很多东西。
这些投入是我们对他健康方面发展的一份承诺。我们有一家的人都支持着他,并且我们已经有了很多进展。”
"He’s my only child. He actually doesn’t have autism; he has Down Syndrome.
We send him to school, take classes, work on personality, behavior, and we also do a lot of stuff outside of class.
It’s a commitment to his well being. We have a family, we all support him, and we are making a lot of progress."
“就在今年,所有事情就好像咔嗒一下、突然顺利起来了。他开始能阅读了,数学也能做得很好。那个时候我就明白是对这些项目的持续投入起了作用。
我们从他一出生就开始做这一切了,现在就好像 ‘啊! 我终于能看见效果了。’ ”
"It’s just this year, things just got clicking. He started reading very well, doing math really well. It’s then I knew the consistency of being on the program worked.
We’ve been doing it since he was born, so now it’s like oh I can see the evidence."
Dr. Ashley
“很有意思的是我们办活动时,经常会看到有中国人参与。去年11月,有四个研究心理学的中国人就在一个活动上给我说:‘我们非常乐意多了解你们的组织,因为在中国,像你们这样分享、传播、互助的社群文化还并不很常见。’ ”
"It’s interesting when we have events somewhere, there are always Chinese. Last November, there were four Chinese studying psychology told me 'We’d love to know more about your organization and everything cos in China, we still don’t have much culture of sharing, spreading, and helping each other with special needs.' "
Adela
“今年七月我刚在Wiley Center工作满一年。一开始我是志愿者,现在我是正式员工,工作的内容就是跟年龄很小很小的孩子们一起,在行为和功能性沟通能力 (behavior and functional communication) 上帮助他们。
我的很多孩子们语言表达能力不太行,所以他们初来乍到一个教室这样的环境,你需要叫他们去读符号手势,教他们什么时候应该做什么,比如什么吋候应该坐下来。”
"I just hit a year in July. I was a volunteer at first. Now I work with little little ones, helping them work on behaviors, functional communication, and some other stuff.
Many of my kids are non-verbal, and when first they come into a classroom setting all of a sudden, you have to teach them to look at the signs, teach them it’s time for certain things, like time to sit down."
“有一次新来了一个女孩,她就完全在尖叫,根本不适应。但是一个月后,突然有一天,她开始做手势,表达说 ‘我(手势)想要(手势)。’
其实她也并没有在表达真正的词汇,但是她当时在使用三个符号的组合,这些突如其来的手势表达让我毫无防备,我当时眼泪就都出来了。”
"There was once a girl came in, she was just screaming and everything. But one month later, there was a day she goes, 'I (gesturing) want (gesturing).'
She was not necessary making true words but it took me off guard cos she was using three sign combos. I started to tear up. "
“就是像这样的很多小事,让我觉得这份工作虽然忙得要命、节奏很快,但是这一切都值得。”
"It’s just these little things that make me feel that this job is crazy busy and fast-paced but it’s all worth it."
“孩子们今天的演出很成功。我们希望通过这次演出传递出去的一个信息就是:标签不能限制住一个人,‘自闭症’这个词不能限定我们孩子的潜力和才华。”
"Our kids did a great job today. The message we want to send out from our show is that people are more than just labels, and the word “autism” can’t limit our kids’ potential and talent."
Note: all the photos and stories are taken and collected during the event; the subjects of the photos are not necessarily matched with texts.
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