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本文来自安安雷特编辑工作组 如需引用或转载请在公众号后台联系工作人员 按语：这是Helena老师年前发在她们瑞典国立雷特中心网站上的文章。是从她个人的角度回溯去年7月Tobii项目的文字。感谢Helena，感谢各位“野心勃勃”的姐妹妈妈们。今年，我们继续努力！ 翻译：小樱桃妈妈 校对：安妈、安爸  深圳速度 1 Speech therapist and doctoral student Helena Wandin reports on a couple of intensive July days in China when she was involved in introducing gaze controlled computers to girls with Rett syndrome. 言语治疗师、博士生海伦娜·旺丁(Helena Wandin)在7月的几天里在中国进行了密集的报道，当时她正参与将眼控电脑介绍给患有Rett综合征的女孩。 Our vocabulary develops during our entire lifetime, hopefully, and in summer I learned a new expression: Shenzhen speed. Until not so long ago, Shenzhen in southern China was just a humble fishing town, but it is now one of the most modern cities in China. Construction and growth are taking place at a tremendous rate, hence the expression Shenzhen speed. 我们每个人的词汇量通常在一生中不断增长，在这个夏天我学到了一个新的词：深圳速度。直到不久以前，中国南方的深圳市还是一个不起眼的渔村，但现在它是中国最现代化的城市之一。城市建设和经济增长正在以惊人的速度进行，因此有了深圳速度这个说法。  图片1：Both gaze controlled computers and communication charts were used to practice modelling 眼控电脑和沟通板都被用来练习示范 密集的项目日程 2 Intensive days I participated in the start-up of a project to introduce gaze controlled computers and symbol communication to six girls with Rett syndrome and their mothers. The families attended during the first four days and during the last two days the teachers and I met to discuss the continued AAC work. To begin with, the parents received information about the hardware and software, and during the first day we prepared the following days’ group activities. We went through, and practised, modelling symbol communication on the computers. 密集的项目日程 我参与到一个项目的启动过程中，这个项目主要是向6个患有Rett综合征的女孩和她们的母亲介绍眼控电脑和符号交流方法。这些家庭参加了前四天的培训，最后两天我和老师们见面讨论了接下来的AAC工作。一开始，家长们了解到了需要用到的硬件和软件的信息，在第一天我们准备了接下来几天的小组活动。我们在计算机上示范符号交流，并进行了实践。 指出语言方面的障碍 3 Pointing out language barriers We were all fairly nervous before we started. The Chinese vocabulary available in eye-gaze computers was completely new to me. I had an English version of the vocabulary and the families had a Chinese version. Not the best of conditions to begin with, in other words. But we had two fantastic volunteers who helped us with translating. In spite of the language barriers, the mothers were immediately modelling with the gaze controlled computers and the girls gradually started to explore the vocabulary themselves. We also used paper charts containing the most general words and phrases. On the second day, the children chatted away so well that we all laughed and were moved. Of course, there was a great deal of exploring this new system, but a lot of what the girls expressed was also spot on. 开始前我们都相当紧张，因为电脑上的中文词汇对我来说是全新的。我有一个英语版本的词汇表，而这些家庭有一个对应的中文版本。换句话说，并非在最好的条件下开始了这些尝试，但我们有两个很棒的志愿者帮着进行翻译。尽管存在语言障碍，但母亲们还是立即用眼控电脑做了示范，女孩们也逐渐开始自己探索这个词汇表。在这个过程中，我们还使用了包含最常见单词和短语的纸质沟通板。 第二天，孩子们就已经使用眼神控制电脑聊得非常好了，我们都笑了并被此场景深深感动。当然，这个新的系统还有很多地方需要进行探索，但女孩们通过它表达的很多东西是非常准确的。 培训和研究 4 Training and research The project is part of the work being run by RSCRI to support children with Rett Syndrome and their families. Currently, the institute consists of the founders, Inga Li and Michael Tan, who themselves have a daughter with Rett syndrome, two teachers and an administrator. A number of volunteers are also linked to the institute, including Yuming and Mei who interpreted during the course. RSCRI has worked together with an Australian research team and has a close relationship with a local centre for matters such as physiotherapy. 培训和研究  图片2： Many chose to read books during the breaks 很多（女孩）选择在休息时间看书 电子健康平台 5 E-health platform In 2016 a research project was carried out in conjunction with Professor ChiKang Yang and Doctor Wang from Donghua University in Taiwan, in which responsive communication, and choice making with objects and pictures were introduced. Since then, AAC has been a major part of a two-week training programme in which five families from different places in China participate each time. The institute also runs an e-health platform where it is possible to up-load training films and create group forums for families from the same region. 电子健康平台 2016年，RSCRI（安安雷特研究所）与台湾东华大学杨炽康教授、王博士合作开展了一项研究项目，该项目介绍了用实物和图片回应沟通、做选择的有关情况。从那时起，AAC就成为为期两周的培训计划的重要组成部分，每次都有来自中国不同地方的5个家庭参加。该研究所还运营着一个电子健康平台，在这个平台上可以上传培训视频，并为来自同一地区的家庭创建群组论坛。 最难忘的时刻 6 Most memorable moments I have so many special memories from the trip. Here’s just a few: · One of the girls chose the phrase “I want to be your friend” and then looked at one of the interpreters that she had shown she liked on several occasions, repeated the phrase, and then selected “Can I have your phone number?” · A two-year old who had shown fairly little interest in the computer sat next to her favourite friend, chose “I don’t like this”, looked at us and then laughed out loud, something she seldom does according to her mother. · Two of the girls communicated so diligently during the book-reading that the mothers laughingly hushed them. 最难忘的时刻 这次旅行给我留下了许多特别的回忆。比如： ·其中一个女孩选择了“我想成为你的朋友”这句话，然后看着她曾多次表示喜欢的一名翻译，重复了这句话，然后选择了“我能知道你的电话号码吗?” ·一位对电脑表现出相当不感兴趣的两岁女孩坐在她最喜欢的朋友旁边，选择了“我不喜欢这个”，她看着我们，然后大声笑了出来，而据她母亲说，她很少这么做。 其中两个女孩在读书时段交流得如此认真，以至于妈妈们不得不笑着让她们安静下来。 雄心勃勃的妈妈们 7 Ambitious mothers The mothers modelled, responded to what the girls expressed and gave them plenty of space to take their own initiative. Yes, it really did go at Shenzhen speed. This was partially because the girls were so social, curious and had relatively good eye motor skills. One of the largest contributors to the fast progress was also the fact that the mothers were so ambitious and instantly got going with modelling and using the communication aids, even in the evenings in the guest apartment. Of course, there still remains a long way to go before they will truly master the computer as a communication aid, but they are off to a good start. 雄心勃勃的妈妈们 妈妈们主动示范，对女孩们表达的内容做出回应，并给予她们足够的空间来发挥自己的主动性。是的，女孩们真的是以深圳速度在进步着。这在一定程度上是因为这些女孩喜欢社交并且好奇心强，而且有相对较好的眼部运动技能。但对这种快速进步做出最大贡献的是，这些母亲们都非常雄心勃勃，她们很快就开始示范，使用沟通工具，甚至晚上在客房里也是如此。当然，在他们真正掌握将眼神控制电脑作为交流工具之前还有很长的一段路要走，但是他们已经有了一个非常好的开始。 故事还在继续。。。 8 Just two days after the course was over, the families sent video clips showing how the girls were using the computers in conversations. And after this flying start, we will have continued contact via video-link. Before each occasion the families will send in a video film for feedback. I am really looking forward to following their progress, and I am so grateful to have been part of this project and have worked with so many committed and competent people. 故事还在继续。。。 线下课程结束后两天，这些家庭就发来了视频剪辑，展示了女孩们之间如何使用电脑相互对话。有了这样一个高效的开始之后，我们继续保持线上的视频互动，通常是家长发送视频给我，然后我给予意见反馈。我真的很期待跟进她们的进步，我也很感激能加入到这个项目里面来，和这么多坚定的而且有能力的人一起工作。  图3：From left to right: Mei Yang, Michael Tan, Inga Li, Helena Wandin, Hua Yao, Xiaomei Cheng, & Mei Wu 从左到右分别是：Mei Yang, Michael Tan（安爸）, Inga Li（安妈）, Helena Wandin, Hua Yao, Xiaomei Cheng, & Mei Wu |
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