【豆苗小组翻译出品】自闭症：希望的故事

Autism: A Story of Hope 自闭症：希望的故事 By ROBERT M. COOK 罗伯特·M·库克 Six-year-old Ryan Nichols loves to talk about his favorite toys, which recently were scattered throughout his family's living room. 6岁的瑞安·尼克尔斯总爱说起自己最喜欢的玩具，最近他把这些玩具丢得客厅里到处都是。 He says he's especially fond of his NASCAR toys and Leapster gamepad, which he plays with in his bedroom. 他说自己尤其喜欢纳斯卡赛车模型和Leapster的游戏机，他都在卧室里玩。 Ryan also has been to Walt Disney World twice and often wears a Mickey Mouse sweat shirt he got there. 瑞安还去过两次佛罗里达州迪士尼乐园，在那里他常穿着一件米老鼠的汗衫。 His parents, Frank and Dione Nichols, hinge on every word Ryan speaks to them. It's something they waited years to hear. 瑞安说的每句话，对于他的父母法兰克·尼克尔斯和迪翁·尼克尔斯来说都是精神支柱。为此他们已经等待了许多年。 Their son, who has autism, now is reclaiming his childhood thanks to ongoing speech and occupational therapy, his parents said. 他们说，多亏了言语治疗和职能治疗，他们患有自闭症的儿子现在能够享受童年的欢乐。 "When you start, there's so much to work on," Dione said. "We've made great progress, but the problem is the expectations keep going up each year." “一旦开始治疗，就有好多事情要做。我们已经取得了很大进步，但问题是期望值每年都在上升。”迪翁如是说。 Ryan attends a full-day kindergarten program. He also receives one hour each of speech and occupational therapy once weekly after school at Easter Seals New Hampshire in Dover. 瑞安上的是全日制的幼儿园。在课外，他每周要到多佛尔市新罕布什尔的复活节封印协会接受一小时的言语治疗和一小时的职能治疗。 Ryan has made new friends in his class and is just learning how to ask appropriate questions so he can converse with his classmates, his mother said. 瑞安的妈妈说，他已经在班上交了新朋友，他刚刚开始学习如何正确地提问，这样他就能和班里的同学进行交流。 For example, Ryan is learning to ask, "Any questions?" after making a show and tell presentation, his father said. 瑞安的爸爸举了个例子：瑞安正在学习在表演或是做完演示后询问“还有别的问题吗？”。 There are so many things Ryan does now that he couldn't when he was 3 and 4 years old, Dione said. “瑞安现在能做很多他三四岁时不会做的事情。” "We wondered if he would ever ask for a present" at Christmastime, she said. “我们还好奇过圣诞节他会不会向我们讨礼物。” This Christmas, Ryan asked for a Lego airplane. He also opened his presents in less than an hour on Christmas morning, his father said. 他爸爸说，这个圣诞节瑞安要的礼物是乐高的飞机模型。圣诞节早上他花了不到一个小时就打开了自己的礼物。 Like many children diagnosed with autism spectrum disorder, Ryan is sensitive to various sounds, such as the microwave or creaking on the stairs. 和许多患有自闭症谱系障碍的儿童相似，瑞安对许多声音都十分敏感，比如微波炉或是踩踏楼梯时的嘎吱声。 Dione said there was a time when Ryan couldn't stand to listen to the car radio. 迪翁说，瑞安甚至一度难以忍受汽车广播的声音。 Frank said he also had trouble if they were in a store and the public address system came on. 法兰克说，他以前在商店里听到公共广播的时候也会很难受。 Watching videos like Disney's "Little Einsteins," and "Thomas the Tank Engine" helped Ryan break down different sounds and music, Dione said. 观看比如像“小爱因斯坦”和“小火车托马斯”一类的迪士尼动画片帮助瑞安逐渐接受不同形式的声音和音乐。 "This was the first year we could play Christmas music in the house," Frank said. “上个圣诞节，我们第一次能在屋里放圣诞音乐” Dione said Ryan "was a very, very happy baby, pretty easy going," but she started to notice signs that he was not developing properly early on. 迪翁说瑞安“是一个很快乐的小宝贝，非常好相处”，但是她从瑞安很小的时候就注意到他没有正常地成长。 For example, when he was a year old, he didn't wave goodbye or point at objects like other children do at that age, she said. 例如，在他一岁时，他不会像其他同年龄的孩子招手再见或是用手指某个物体。 At 2 1/2, Ryan would say some words, "but I would never hear those words again,"she said. 两岁半时，瑞安开始会说一些话，“但我再也没听过他说同样的话”。 At 3 1/2 years old, Ryan talked more, but mostly would repeat phrases he heard while watching videos, his mother said. 三岁半时，瑞安能说更多话了，但大多数时候只是重复他从电视上听到的词组。 If she asked him "Do you want waffles or pancakes?" Ryan would reply, "Waffles or pancakes" and not answer her question, she said. 假如迪翁问“你想吃华夫饼还是煎饼呢？”，瑞安只会重复“华夫饼还是煎饼”，不会回答她的问题。 A former preschool teacher with some knowledge of childhood development, she found herself doing more research online and in books. Little by little, she came to realize her son showed signs of autism spectrum disorder - a diagnosis later confirmed by the Seacoast Child Development Center at the University of New Hampshire in Durham, where Ryan was evaluated. 迪翁曾是早教教师，对儿童成长有一定的了解，她开始在网上和书上查阅相关的资料。她渐渐意识到瑞安所表现出的正是自闭症谱系障碍的症状——后来瑞安在达勒姆的新罕布什尔大学海岸儿童成长研究中心接受了评估，这种想法最终得到了证实。 Dione said it's taken a lot of hard work and patience to help their son reach this stage of his development. 她说，为了帮助儿子达到这一成长阶段，他们已经付出了大量的努力和耐心。 One of the most difficult aspects was figuring the right type of therapy to help their son learn to communicate and engage the world around him, she said. 最困难的一部分就是找出最合适的治疗方式，帮助儿子学会交流，参与到周围的世界中。 Her son attended a preschool program offered by the local school district, but his mother said she wasn't satisfied with the services they provided. 瑞安上的是当地学区的早教课程，但是迪翁则表示对其提供的服务并不满意。 At age 4, Ryan attended the Dover Childrens Center kindergarten program for a year and received more than two hours of speech and occupational therapy weekly. 4岁时， 瑞安在多佛尔儿童中心幼儿园上了一年学，并开始接受每周两个小时以上的言语和职能治疗。 "Ryan was very fortunate to have a wonderful kindergarten teacher," his mother said. "They focused more on pure childhood development." “瑞安很幸运地遇到了一位很好的幼儿园老师，他们更纯粹地关注儿童的成长。”他妈妈如是说。 They helped Ryan learn to play with other children and made sure Ryan always was involved with class activities, she said. 他们教瑞安如何和其他孩子一起玩耍，保证瑞安总能参与到班级的活动中。 "At that time, Ryan would not do an activity for more than a minute or two," she said. “那时，瑞安对每样活动的注意力只能维持一两分钟。” The teachers made several possible activities available at once, with roughly six things for him to do at any given time. They would go from one thing to the other as needed to guide Ryan, his mother said. 老师为他随时准备了六种能同时进行的活动和六样东西。他们会一件件地给瑞安提供必要的指导。 At home, she and her husband continuously worked with their son to reinforce the skills and learning techniques used at school, she said. 在家里，她和丈夫也不断地和儿子一起着重练习在学校里会用到的能力和学习技巧。 Dione learned the best way to teach Ryan how to do a simple task like drawing a picture was to break it down. Instead of asking him to draw a face, she would practice helping him draw the eyes. Little by little, Ryan improved his speech and play skills, she said. 迪翁发现要教瑞安完成一项简单的任务，比如画画，最好的办法就是将其分解成不同的部分。相比要瑞安画一张脸，她会选择教他画眼睛。渐渐地，瑞安在言语和玩耍方面的能力得到了提高。 Frank said they've also learned there is no hourglass that governs how much their son can learn. 法兰克说，他们也发现，他们的儿子能学多少，这并没有所谓的时间限制。 Many doctors and childhood experts told the couple their son had to master certain skills by age 6 or his learning window would close. 许多医生和儿童成长专家告诉尼克尔斯夫妇，他们的儿子必须在六岁以前必须掌握一定的能力，否则他就会失去学习的能力。 But Ryan's speech and occupational therapists told the couple the brain is malleable, and people never lose the ability to learn, even if they have autism, Frank said. 但是瑞安的言语职能治疗师们却告诉他们，大脑是可塑的，即便是自闭症患者也不会失去学习能力。 "You got to crack the code" when it comes to helping children with autism learn, Dione said. She compared the process of trial and error to what Thomas Edison said about creating the light bulb. Edison used to say he found 10,000 ways not to make a light bulb before he discovered the right way, Dione said. “这就像是在破译密码”，说起帮助自闭症儿童学习时迪翁说道。她把这个过程比作爱迪生发明灯泡，不断地实验，不断地犯错。爱迪生曾说过，他尝试过一万种方法最终才找到了制作灯泡的最佳方法。 But the couple says they by no means believe they've found the best or only way to help other families who have children with autism. If there's one common thread other people can take from the Nichols' situation, it would be hard work and never giving up, no matter what, they said. 但尼克尔斯夫妇认为，他们的方法对其他有自闭症儿童的家庭来说，并不是最好或唯一的方法。假如要从他们身上寻找治疗的共同思路，那就是无论如何都不放弃努力。 "We had plenty of bleak days," Frank added. 法兰克补充道，“痛苦绝望，我们已经经历得太多。” Now Ryan's father said he feels more optimistic his son will have a good life. 现在他却表示他能乐观地预见到他的儿子将会拥有美好的生活。 "It gives me hope for a better tomorrow," Frank said. “我对更好的未来充满了希望。” As Ryan heads toward first grade, his parents say there are still many challenges that remain to help their son build his social and communication skills. But they add that they also feel they'll meet those challenges based on what they've experienced so far. 瑞安即将上小学一年级，他的父母说在帮助他掌握社交和交流能力的过程中他们还会遇到许多挑战。但是积累了这么多的经验后，他们也相信一定会找到解决这些问题的方法。 "I'm proud of Ryan because he's worked so hard," his mother said. 瑞安的妈妈说，“我为他骄傲，因为他一直都非常努力。” 对本文的特别申明：由于我们的医学专业知识和翻译水平有限，译文可能会有瑕疵，欢迎大家提出宝贵的意见和建议，以便帮助豆苗计划翻译小组更好地开展工作。