如果你有一个患自闭症的兄弟姐妹

自闭症新闻

ALetter on 'What It’s Like to Have a Sibling withAutism'

如果你有一个患自闭症的兄弟姐妹

来源：

http://www.autismspeaks.org/blog/2014/10/10/letter-what-it’s-have-sibling-autism



Pat…

帕特…



If you namea Beatle’s song, my brother will tell you the exact day, month andyear it was released. He’ll even tell you what day of the week itwas if you feel so inclined. In fact, this morning while I waseating breakfast, he matter-of-factly informed me that JustinBieber shares a birthday with Roger Daltrey from The Who. He canrecall any date regarding the smallest ofoccasions.  If you ask him the last time we wentto the antique store in Maine, he will tell you it was June 4th,2001, a Thursday and it was raining, but he didn’t mind. The lasttime he ate shrimp was on a Wednesday, six years ago, and the weirdtexture and smell didn’t sit well with him. He will read ten pagesof a book and then recite it back to you without skipping a beat.My brother has unique abilities unlike anyone I have evermet.

如果你随意说一首披头士的曲名，我的弟弟可以准确地告诉你这首歌是哪年哪月哪天发行的。如果你感兴趣，他甚至可以告诉你那一天是一周中的星期几。事实上，今天早上在我吃早饭的时候，他很正经地告诉我贾斯丁比伯和罗格道奇（扮演神秘博士）是同一天生日。他可以记住任何事件的日期，即使是最不值一提的事件也不放过。如果你问他最近一次我们去缅因州的古董店是什么时候，他会告诉你是2001年6月4日，一个下着雨的星期四，但事实上他一点也不关心这件事。他还可以告诉你他上一次吃虾是在一个星期三，而且是6年前，虽然他一点也不喜欢那奇怪的味道。他可以读十页书，然后一字不漏地倒着把内容复述出来。我从没在其他人身上发现过我弟弟的这些本领。



He isbrilliant. He is priceless. His brain works in ways that mine neverwill. But he does not fit society’s “norm” and these amazing skillsoften go unappreciated. My brother has autism.

他非常地聪明，而且对于我们的家庭来说，他是无价之宝。他的大脑以一种我永远无法理解的方式工作着，但他却不能适应社会规范，他的这些超人的本领常不被人欣赏。我的弟弟有自闭症。



I have had aunique life. I grew up with a little brother whose needs werealways more important than mine. Acceptance took longer than Iwanted it to… strange looks when Pat acted out in public, theuncomfortable look on my friends’ faces when I decided (aftermonths of internal debate) I would invite them over toplay.  Sometimes when a sibling has a disabilityyou feel pressure to compensate for it. I wanted to be the best ateverything and go above and beyond in every minute detail of mylife. I was hyper aware of my dire need to succeed for as long as Ican remember. I wanted to be the athlete I imagined my fatherlonged for. I wanted to be the smartest student my mother wouldbeam over – this was all self-provoked and not at all from myparents. I selfishly considered myself the only possible ‘proof’that my parents were good parents and could raise ‘good’ children.Who else did they have? Who will take care of them someday? Irealize now I could not have been more wrong.

我的生活经历十分独特。在我成长过程中，我弟弟的需要总是高于我的需要。外界接受他所花的时间总比我预想的要长…无论是在公众场合下，人们用奇怪的眼神看待帕特的举止，还是我在经过长时间的思想斗争后，邀请朋友到家里来玩时他们脸上挂着的不自在的表情。有时候，当一个兄弟姐妹有残疾时，你总是会觉得自己亏欠了他们什么。自我记事起我便极度地渴望成功。小时候，我总是想在所有事情上做到最好，甚至是生活中的每一个细节。我希望自己成为像父亲一样的运动员，让母亲高兴的最聪明的学生——这些都是我自己给自己的目标，而不是父母对我的期望。我自私地认为只有我做好了，才是证明他们是可以抚养出优秀子女的好家长的唯一途径。除此之外他们又能指望谁呢？将来他们老了，谁照顾他们？而我现在才意识到自己犯了一个大错。



To be thesister of a child with autism means every day is crazy and younever know what to expect. It’s stressful. It’s chaotic. You growup very quickly. Whining about staying up later or wanting thenewest phone seems completely insignificant when your sibling isstruggling with basic life skills. You deal with a lot of emotionsand anxieties that never cross the minds of other 8-years-olds. Whyare those kids staring at my brother? What are they saying? Pleasestop flapping your arms. You hate your sibling, you love yoursibling. It is overwhelming at first and that’s okay. You lose alot - that trip to Disney would overwhelm him and your first violinconcert might irritate his sensory issues. However, what you gainare irreplaceable life experiences that turn you into a strong,independent and caring adult who knows the true meaning of love,hard work, patience and family.

作为一个自闭症孩子的姐姐，每一天都是疯狂的，因为你不知道这一天会发生些什么。这样的生活很压抑，有时也很混乱。因为相比之下，你觉得你长大的太快了。当你已经开始要求父母让你晚点睡觉，或者最新款的手机已经对你失去了吸引力，你的弟弟却还在为基本的生活技能挣扎着。你会经历复杂的情感经历，而其他和你一样的8岁小孩很难对你的经历感同身受。你会问自己：为什么那些孩子那样瞪眼看着我的弟弟？他们在窃窃私语些什么？请不要再对他指指点点。你恨着你的弟弟，但你也爱着他。有时这让你感到手足无措，但时间久了，一切都好。诚然，你失去了很多——你不能去迪斯尼乐园，因为他会感觉烦躁，你不能去小提琴演奏会，因为你可能会刺激他的感官系统。但是，你得到的是你的生活经历当中不能被取代的那一部分，这些经历让你变得强大，独立，并在你成年之后促使你懂得爱，勤奋，耐心与家庭的真正含义。



When I waslittle, the doctors said Pat would never speak. I wondered if mybrother would ever be able to talk to me and tell me how he feltand why he cried and screamed. I wondered why we couldn’t leave thehouse without tears, even to go to the grocery store or why my momwas tying his shoes at ten years old. I didn’t understand why hedidn’t respond when we screamed “Patrick!” over and over the day mymom asked me to watch him for two minutes and he wandered away. Iwondered how many other six-year-olds had lost their brother beforeand if they understood the guilt. I wondered if he only knew me asthe brown haired stick figure his therapist drew and labeled“Sister” in his book of words he would point to when he tried tosay something. I wondered if he even knew I was his sister and whatit meant to have a big sister. It means you always have someonelooking out for you, worrying about you and wishing the best foryou.

我小时候医生说帕特永远不会开口说话。我在想我弟弟是否永远都不能和我说话，告诉我他的感受，他为什么哭和尖叫。我在想我们为什么每次出门，即使是去杂货店，都会遇到不好的事情，为什么弟弟都十岁了还要妈妈给他栓鞋带。我不知道当妈妈让我照顾他两分钟他就走失了那次，在我们大叫“帕特”的时候他为什么会不答应。我想知道有多少孩子在六岁时就把自己的弟弟弄丢了，体会过那种愧疚感。我想知道他是不是认为我只是他医生笔下那个棕色头发的、被称作姐姐的人，只存在于那本他想说什么时会翻出来指的图片书中。我想知道他是否明白我是他姐姐，有个姐姐有什么意义。这意味着有人会一直找你，担心你，希望你好。



Then heproved everyone wrong and he spoke. I wondered if he would ever beable to tie his shoes, and when he learned how to tie his shoes, Iwondered if he would ever be able to ride a bike. Pat now rides hisbike all over the place all by himself. He volunteers at homelessshelters, the library and the hospital. He has made strides thatcould inspire anyone on their darkest days.

之后他证明了所有人都是错的。我想知道他是否永远都不会自己栓鞋带，但当他学会如何拴鞋带时，我又想他是否能学会骑自行车。现在他一个人骑车去很多地方。他在去流浪者救助中心、图书馆和医院做志愿者。所有人在感觉糟糕的时候想到他都会振作起来。



While thereare a lot of things I don’t know, I do know that there is nothingPat can’t do… He will face challenges we will never face but he cando anything. And if he lives with me for the rest of my life, Iwill be the luckiest big sister in the whole world to have everyday blessed by the honesty, innocence and joy that someone withautism brings. Disabilities bring you back to the bare basics wherebeing kind, helpful, patient and loving are the most importantattributes.

尽管我不知道许多事，但我知道没有帕特不能做的事。他面对我们从未面对的挑战，但他能做任何事。如果他余生和我住在一起，我会是世界上最幸运的姐姐，因为我每天都有他的诚实、单纯和快乐为伴。自闭症让你回到最本质的东西，善良，乐于助人，耐心和爱心是最重要的品质。



People fearwhat they do not understand. Understanding is the key toacceptance; to understand that everyone is different and somepeople need extra help, extra time, extra attention and a littleextra love. Understand that a disability does not give you theright to ever feel you are worthier than someone else. Autismexposes some tough, scary feelings. It forces you to reevaluate andabandon the life you may have envisioned and begin a new,untraveled, unplanned path. You don’t know where this path ends,but you just grab your family’s hands and head on down. My parentsare the most amazing people I have ever met and with their love anddedication, Pat and I have grown into young adults with the utmostrespect and gratitude for one another.

人们害怕他们不懂的事物。理解是接受的关键；我们要理解有些人需要额外的帮助、时间、注意和爱。理解残疾并不能让你觉得自己高人一等。自闭症暴露出一些难以接受的可怕的感受。它强迫你重新思考，放弃你觉得你会过的生活，开始一段新的、没人走过的、没有计划的旅程。你不知道这条路通向哪里，但你只是牵着家人的手向前走。我的父母是我见过最好的人，懂得爱人和奉献。我和弟弟在成长过程中一直都很尊重和感谢对方。



And to mybrother, I love you more than words will ever be able to describe.I would not trade you for the anything. I would not change anythingand I would go to the ends of the world for you. The struggles makeus stronger. I am the luckiest girl in the world to have learnedwhat life is genuinely about. It’s about love. Thankyou.

弟弟，我对你爱无法用语言表达。我不会用任何东西和你交换。我不会想改变你身上的任何一点，我愿意为你去世界尽头。我们经历的挣扎让我们更强。我是世界上最幸运的女孩，因为我学到了生活的真谛是关于爱。谢谢你。



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。

翻译：给福尔摩斯先生的信      

      彼岸花开               

复核：复核：ゼ~SUNNY~ザ   

转自：新浪微博 @ 豆苗计划志愿者联盟关爱自闭症

http://weibo.com/p/2304186c9907250102w6zp

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