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美国家庭(华裔)和大家分享

转载 2016-02-21 23:09:00

介绍:五项目的一个好朋友, 志愿者,Wendy Chow, 是一个22岁孤独症儿子 (Joey)的妈妈。 我们请她分享一下他们这20多年的一些经验的感受。 下面是她写的文章。我们非常感谢她的分享。我们也很开心看到她强调视觉提示(把活动写下来,包括在日历上)的重要性!

另外想感谢两位做翻译和整理的志愿者, 吴川(Jenny Wu ) 和 Rose Recchia (袁偌玫).(Joey 的妈妈会说广东话,但是因为在美国长大了,所以她请我们帮她翻译,我们找了志愿者帮忙). 我们五项目的海伦是1992年就认识了吴川和Rose​. 值得提出是她们都和五项目的开始有关系。 我们1992年在中国的时候认识了南京孤独症女孩,张戈(她到现在特别喜欢“五” 所以我们叫五项目机构)。 吴川是张戈的妹妹,也是一个非常积极的志愿者,英文也非常流利。 Rose 是五项目海伦(孟蔼宁)的大学同学, 她1993年在南京大学学习了一年,当年也就认识了张戈和吴川。 所以我们这次翻译团队很有意义,20多年因为孤独症而持续了这个友谊。谢谢吴川和Rose!! 

 Wendy Chow 慧敏)是一个22岁孤独症儿子(文康)的母亲。她和她的丈夫 (銓) 还有另外一个20岁的女儿 (文善),他们住在马萨诸塞州。下面是她的文章:

我们是一个很典型的美籍华人家庭。我的丈夫和我都是在香港出生,儿时移民来美国的。我们俩长大时在家都说广东话,但是我们的两个孩子都不说中文。

我们的儿子Joey,是我们两家的第一个孙子。Joey是一个快乐而平静的婴儿,很少哭,很少提要求。Joey婴儿发展时期一个很独特的方面是,他在18个月时就学会了字母表并懂得了拼写。我们通过让他在电脑上打字来测试他的能力。我们发出一个单词的声音,然后他在电脑上输入:bat,hat, pat, mat; book, look, hook, dook.[1]

我们以为他注定是一个天才。他不喜欢听故事,但是非常爱翻电话簿。他不知道该怎么球玩,但喜欢用绳子形成字母。

我们不知道他社会发展的严重障碍,直到他2岁检查时,儿科医生问他会说多少个单词。不超过五个,我们说。(不,是,嗨,再见。)我们当时还不知道,一个平常的小孩在他这么大的时候应该可以说话了。问了更多的问题之后,她建议我们去咨询儿童心理学家。Joey2岁半时确诊患有待分类的广泛性发展障碍(PDD - NOS) 。

我们虽然欣慰地得到诊断,但是还是得与悲痛作斗争。我们刚刚被告知,我们已经为我们的第一个孩子所设想的潜能和无限的可能性,现在几乎不可能实现了。我们所有的梦想和希望,现在不得不进行修改。

多年来,我们学到了驾驭美国特教系统的词汇和方法。但是,对于我们俩传统的中国父母来说,他们还是很难理解Joey的挑战。他们认为我们没有正确地管教他。为了确定Joey能顺利和他的老师沟通, 我们自己决定只和他用英语沟通。(我们的女儿也经历了语言发展迟缓,过早期干预,但她现在已经没有障碍了。)我们的父母们以为我们要放弃我们的中国根。Joey在感官方面有障碍,需要避免很多食物(麦片会导致他呕吐),所以我们特地为他准备饭菜,他们认为我们是在溺爱他。

幸好Joey有阅读能力,我们有和他沟通的方法。比如,第一个学校的圣诞假期,他早晨哭了。我和他解释,学校在放假,两个星期后他会恢复到正常的日程安排。第二天早晨他又哭了。就在这时,我想到一个主意,写下我的解释,并且让他看日历。第三天,他没有哭。从那时起,我为他写下指令和说明。他的幼儿教师也将教室里所有的东西贴上标签,并且打印出了学校的规章制度。一旦他懂得了道理,他再也没有发过脾气。

Joey现在已经22岁了,他在社区大学读书,并且有两份数据录入的兼职工作。他学会了自己乘坐公共交通工具,买地铁月票,在餐馆点餐,买玩具和手工艺品。虽然他的口头表达能力仍然未成熟(短句,错位的语法,语调很平),他懂得他所需要的一切,来驾驭这个世界。

Wendy Chow is the mother of a 22-year-old son with autism. She and her husband also have a daughter, 20, and they all live in Massachusetts.

We are a typical Chinese-American family. My husband and I were both born in Hong Kong and immigrated to the US as children. We both grew up speaking Cantonese at home, but neither of our children speak any Chinese.

 Our son, Joey, was the first grandchild for both our families. Joey was a happy and placid baby who rarely cried or made demands. One unique aspect of Joey's development was that he learned the alphabet as a baby and understood phonics by 18 months. We tested his knowledge by having him type on the computer. We spoke a sound and he typed it: bat, hat, pat, mat; book, look, hook, dook. We thought he was destined to be a genius. He didn't enjoy listening to stories, but loved flipping through the phone book. He didn't know how to play with a ball, but enjoyed forming letters with string.

We weren't aware that his social development was impaired until at his 2-year check up, when the pediatrician asked how many words he spoke. "No more than five," we said. (No, yes, hi, bye.) We didn't know that a typical toddler would be talking by then. After more questions, she referred us to a child psychologist. Joey was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) at age 2.5.

While were relieved to get a diagnosis, we also had to grapple with grief. We had just been told that the potential and possibilities we had envisioned for our first-born were never to be. All our dreams and hopes now had to be modified.

 Over the years, we learned the vocabulary and ways to navigate the US special education system. However, it was much more difficult for our traditional Chinese parents to understand Joey's challenges. They thought we weren't disciplining him correctly. To avoid confusing Joey and make sure he could communicate with his teachers, we made a personal decision to communicate with him in English only. (Our daughter also had delayed speech and went through early intervention, but she has no disability now). They thought we were abandoning our Chinese roots. He had sensory issues and avoided many foods (oatmeal made him vomit) so we cooked special meals for him. They thought we were spoiling him.

Thanks to Joey's reading ability, we had a way to communicate with him. For example, during his first Christmas break from school, he cried in the morning. I explained that he's on school vacation and he'll return to normal routine in two weeks. The next morning he cried again. That's when I got the idea to write out my explanation and show him the calendar. He didn't cry the next day. From then on, I wrote out instructions for him. His preschool teachers also labeled everything in the classroom and printed out school rules and instructions. Once he understood things, he never had a temper tantrum again.

Now at age 22, Joey attends community college and works in data-entry at two part-time jobs. He's learned to take public transportation by himself, buy his own monthly subway passes, orders lunch at restaurants, and shops for toys and crafts items. While his verbal communication skills are still rudimentary (short sentences, mangled syntax, flat intonation), he understands everything he needs to navigate the world.

[1]  这八个单词直译为:蝙蝠,帽子,拍拍,垫子;书,看,钩,dook。这两组单词发音相似,只有辅音不同。通常家长和老师用这些发音相似的词来教孩子拼写单词。

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