听力课堂TED音频栏目主要包括TED演讲的音频MP3及中英双语文稿,供各位英语爱好者学习使用。本文主要内容为演讲MP3+双语文稿:帮助有特殊需要的儿童的创新方式,希望你会喜欢!
【演讲者及介绍】Billy Samuel Mwape
Billy Samuel Mwape是一名计算机科学家、项目管理专家和商业策略师,在银行和矿业领域拥有超过16年的经验。
【演讲主题】帮助有特殊需要的儿童的创新方式
An innovative way to support children with special needs
【中英文字幕】
翻译者 Lilian Chiu 校对者 Helen Chang
It is the third of March, 2016, and I'm anxiously waiting for my wife to deliver our firstborn son. Seconds turn into minutes, then hours, without a sign of a child coming through. Then a midwife emerges with a silent baby in her hands, and she runs past me as though I'm not even there. Why is he not crying? I'm gripped with chills in my spine as I run after her in terror. She puts the baby on a bench and begins a resuscitation procedure. Thirty minutes later, she tells me, "Don't worry, he will be fine, and thank you for staying calm." He was placed in the ICU, and though I cannot touch him, I repeatedly say, "Shine on, my son. Don't give up. I am here with you, and you don't have to be scared. Please pull through and let us go home. You do not belong here."
2016年3月3日,我焦虑地等着我太太生产,这个儿子是我们的第一胎。几秒钟变成了几分钟,接着几小时,都没有孩子要出来的征兆。接着,一位产婆出现,手中抱着一个安静的宝宝,她从我身边跑过去,好像我不在那里一样。为什么孩子没有在哭?我恐惧地跟在她后面跑着,紧握双拳,背脊发凉。她把宝宝放在长椅上,开始执行抢救流程。三十分钟后,她告诉我:「别担心,他会没事的,谢谢你保持冷静。」他被送到加护病房,虽然我无法触碰他,但我不断重覆说:「继续发光,我的儿子。别放弃。我在这里陪着你,你不用害怕。拜托,要挺过去,我们一起回家。你不属于这里。」
Seven months later, he would be diagnosed with cerebral palsy, a nonprogressive brain injury which primarily affects body movement and muscle coordination. About two to three children out of 1,000 in the United States have cerebral palsy. I do not know the statistics for my country and continent, because there's not much documentation. Maybe this could be the journey that changes everything.
七个月后,他被诊断出脑性麻痺,一种非进行性的大脑伤害,主要会影响到身体活动和肌肉协调。在美国,大约有千分之二到三的孩子患有脑性麻痺。我不知道在我的国家、我的大陆,统计数据是什么,因为没有那么多文件记录。也许,这会是改变一切的旅程。
We named him Lubuto, a beautiful Zambian name from my Lunda tribe of the Bemba-speaking people, meaning "light." By the time he was seven months, Lubuto's physical impairment was predominant in the left part of his body. Both his left leg and arm were less responsive. He couldn't grasp items; worse off, couldn't babble his first words because the cerebral palsy shackle affects the muscle in his lips. Rolling over and other milestones that come naturally in typical babies, couldn't be seen in our son. Lubuto was visibly unaware of his own body. And some specialists started preparing us for the worst by telling us that we were going to be very lucky if he ever sat upright and unsupported. Before us was a gigantic, seemingly immovable mountain. What do we do?
我们将他取名为鲁布托,那是美丽的赞比亚名字,出自我所属的卢巴部落,这个部落说的是本巴语,鲁布托的意思是「光」。当鲁布托七个月大时,他的身体损伤主要影响了他的左半身。他的左脚和左手臂反应都比较差。他无法抓取物品;更糟的是,他无法牙牙学语说出他的第一个字,因为脑性麻痺也影响了他嘴脣的肌肉。翻身以及其他一般宝宝很自然会达到的里程碑,我们的儿子都无法做到。鲁布托很明显无法意识到自己的身体。有些专家开始帮我们做最坏的准备,告诉我们,如果他不用支撑能坐直,我们就算非常幸运了。在我们面前的,是一座似乎无法搬移的巨山。我们能做什么?
For the past 15 years, I have worked as a computer programmer, and now I'm a certified project management professional. After the denial, crying and partial depression was over, I began to wonder if we could put my programming and project management skills together to try and help the situation. Acceptance kicked in, and I searched from deep within for strength and any available knowledge to help with the challenge before us.
在过去十五年间,我都在担任计算机程序设计师,现在,我是有证照的专业项目管理人员。在否认、哭泣,和部分忧郁结束之后,我开始思考我们是否能把我的程序设计和项目管理技能整合起来,试图协助改善这个状况。我开始能接受,我往内心深处寻找力量和任何可得的知识,来协助处理我们眼前的挑战。
I ordered two books online and spent countless sleepless nights researching neuroplasticity in a child's brain. My extensive research indicated that people who have strokes are able to recover through assiduous rehabilitation programs that activates new parts in the better part of their brains.
我在在线订购了两本书,花了无数不眠的夜晚,研究孩童大脑的神经可塑性。经过广泛的研究,我发现,中风的人可以透过照顾周到的康复计划来复元,他们大脑较好的那一部分当中有些新部分可以被活化,
This left me with one big question: If this works for grown people, why should it not work for a baby? I also learned that human beings pick up fundamental patterns mainly between ages zero to five, and after that, consolidation of habits happens. It was scary to realize that we may just have five years to figure out the immobility of Lubuto.
这让我产生了一个大问题:如果这个方法对成人有用,对婴儿为什么不会用有?我也发现,人类主要是在零到五岁这段时间学会基本的模式,在那之后,习惯就会开始固化形成。这很让人害怕,因为发现我们可能只有五年时间来想办法改善鲁布托的活动障碍。
On such a tight timeline, we needed to build a support system around him, leveraging the limited resources available to us. This was a clear project before us which needed to be carefully executed, and we needed a capable, self-driven team, an agile team.
在这么紧迫的时间压力下,我们得在他周围打造出一个支援系统,好好发挥我们能取得的有限资源。在我们面前的,很明显是一个项目,我们得小心地执行它,还需要一个有能力、自主的、敏捷的团队。
"Agile" is a methodology that we use to execute projects with changing requirements to achieve progressive results in increments. We needed to deliver quick results, and in pieces, considering our work was largely dependent on Lubuto's responsiveness and capability.
「敏捷」是一种方法论,我们用它来执行需求不断改变的项目,以一步一步达成渐进式的结果。我们需要快速产出结果,且是零散的,因为鲁布托的回应状况和能力对我们的工作任务影响非常大。
The first team member I acquired was my beautiful wife Abigail, who is luckily a project manager, too. You know how rough that can be, right? Two project managers under one roof.
我找来的第一位团队成员是我美丽的太太艾碧嘉,很幸运的是,她也是项目经理。你们知道那有多难搞吧?两个项目经理同在一个屋檐下。
We searched around Zambia for a neonatal physiotherapist, an occupational therapist and a speech therapist. It felt like mission impossible. We set road maps of one to three months, just enough planning and just in time. We then identified features like, "We want him to stand and walk independently," under different themes like gross motor, fine motor, adaptive skills, communication, asymmetric movement and balance.
我们在赞比亚寻找一名新生儿物理治疗师、一名职能治疗师,以及一位语言治疗师。这感觉好像是个不可能的任务。我们设定的蓝图是一到三个月。刚好能在时间内做足够的规划。接着,我们找出想要达成的特性:「我们希望他能独立站起来行走」,归类在不同的主题下,如粗大动作、精细动作、适应技能、沟通、对称动作,以及平衡。
Next, we created sprints to work on the stimulation of different parts of Lubuto's body. When you're working on an agile project, you do a series of lead-to tasks, collectively called "sprints," which the team reviews after execution. We, for example, set a goal to stimulate his left arm. Say occupational therapists use different textures to rub on his arm. Physiotherapists make deliberate movements in his arm to build the muscles. And self-proclaimed general therapists, who was usually myself, engage in logical stimulations like slowly moving his favorite toy from his right hand across and by in front of him to his left side to prompt movement in his left arm.
接着,我们设计出刺激鲁布托各个身体部位的冲刺计划。在做敏捷项目时,要做一连串的过程任务,合起来就叫冲刺计划,团队会在这个冲刺计划执行之后进行检讨。比如,我们设定的目标是要刺激他的左手臂。职能治疗师用不同的布料去摩擦他的手臂。物理治疗师刻意用他的手来做某些动作,以锻鍊肌肉。而自称的一般治疗师,通常就是我,会采用逻辑刺激,比如缓缓地将他最爱的玩具从他的右手拿走,移过他面前再到他的左侧,以促进他左手臂的活动。
And at the end of each week, we would review our results as a team: How did OT go? How did physio go? How did stimulation go? Did we meet our goal? Because frequent communication is very important on an agile project, we created a WhatsApp group for quicker updates.
每周结束时,我们会做团队讨论,检讨我们的结果:职能治疗做得如何?物理治疗做得如何?刺激做得如何?我们有没有达到目标?因为在敏捷开发项目中,经常沟通非常重要,我们建立了一个WhatsApp群组,方便我们快速提供新讯息。
Failing early and picking up is a special characteristic of agility, and we leveraged that because our work is largely dependent on his response. Luckily, Lubuto is a fighter, and his determination is out of this world. After we achieved the goal of activating his arm, we then moved to his leg. The activities were totally different, but followed the similar iterative process. I would come to learn in brain plasticity that Lubuto was better off learning certain skills when he was ready, even if it meant delaying him, because he had to learn it right.
在初期就失败并再接再励是敏捷项目开发的一个特色,我们采用这种方式是因为他的反应对我们的工作影响甚巨。幸运的是,鲁布托是个斗士,他的决心可说是超凡。在达成「活化他的手臂」这个目标之后,我们接着处理他的腿。要使用的活动完全不同,但递回重覆过程很类似。我从大脑神经可塑性渐渐学到鲁布托最好是在他准备好时再去学习某些技能,即使那样会延误也没关系,因为他必须要学正确。
While working and managing Lubuto as an agile project, a new team member popped up. Oh! It's Lubuto's sister, Yawila. We had no idea how we were going to manage the process without disturbing him while not making the sister feel neglected because we were giving the brother a lot of attention.
当我们把鲁布托当作敏捷项目开发来进行和管理时,一位新团队成员冒出来了。喔!是鲁布托的妹妹,雅薇拉。我们不知道要如何在不打扰到他的情况下进行流程,同时也不要因为给他很多注意力而让他的妹妹觉得被忽视。
Our daily iterations continued, and now Lubuto was able to walk on his stiff legs. With me cheerleading from the front as I walked backwards, because I needed to keep eye contact with him, I sang his favorite songs, as we oscillated between our bedroom and the kitchen.
我们的日常重覆递回持续进行,现在鲁布托能够用他僵硬的脚行走了。我在他前面倒着走路引导他,为他加油,因为我需要保持和他眼神交会,我会唱他最喜欢的歌,同时在卧室和厨房之间摇摆地来回走。
We then traveled to South Africa and introduced a neuromovement therapist to the team, coupled with hyperbaric oxygen therapy. These sprints were much shorter and focused on his brain, teaching him about his own body through small body movements. Terry did a miraculous job. Lubuto started opening his knees in unison with his hips. And in our second week, he was able to run with better balance. He started making intentional sounds to communicate with us as a result of the new neuropaths firing.
接着,我们前往南非,找了一位神经运动治疗师加入团队,结合高压氧治疗。这些冲刺计划更短许多,且把焦点放在他的大脑,透过小小的身体动作教导他认识他自己的身体。泰瑞做得非常出色。鲁布托开始配合他的臀部打开他的膝盖。在第二周时,他能够更平衡地跑步了。他开始刻意发出一些声音来和我们沟通,这是新的神经通路连结之后的结果。
We returned to Zambia with amazing results. And guess who effectively picked up the therapy? The new team member. Lubuto started mimicking the sister, and soon he was learning more things good and bad from the sister than he was learning from his team of therapists. To make sure that he stays on track, we built a unique curriculum that incorporates all the therapies with teacher Goodson.
我们带着惊人的结果回到赞比亚。猜猜谁接手了治疗?我们的新团队成员。鲁布托开始模仿他的妹妹,很快的,他向他的妹妹学到的好事与坏事已经比向治疗师团队学到的还多。为了确保他不偏离正轨,我们和古德森老师合作,打造一门整合所有治疗的独特课程。
We've been blessed to have the knowledge before us and be able to practically apply it. Not all families with special needs children are as fortunate as we are. We still have backlog stories, which is a fancy agile term for pushing failure to a later date, in Lubuto's case, drooling and potty training. But in iterative, little daily activities, we managed to improve the entire left part of Lubuto's body -- from the arm, to one finger to the other, from the leg to the toes. Lubuto began to roll over. He began to independently sit. He was able to crawl, stand, walk, run, and now he plays soccer with me in a more coordinated manner. This has left my wife's heart and mine melting, and we've been blown away by the unbelievable results we've witnessed as a result of this experimental methodology. And now, we proudly call ourselves "agile parents."
我们很有福气,能取得这么多知识,且能实际运用它们。很多家庭也有这种特殊需求的孩子,却没我们那么幸运。我们还有待改善事项未完成,待改进事项的目的是要延后失败,这在鲁布托的例子中包括流口水和便便训练。但,在不断重覆的日常小活动中,我们得以改善了鲁布托的整个左半身——从手臂,到每一只手指,从腿到脚趾。鲁布托开始会打滚。他开始靠自己坐好。他也会爬行,会站立,会行走,会跑步,现在他的协调更好了,还能跟我玩足球。这让我们夫妻俩的心都融化了,我们非常高兴,无法置信我们亲眼见证这种实验性方法论带来如此惊人的结果。现在,我们很骄傲地自称「敏捷父母」。
You may be a parent with a special needs child like me, or you could be facing different types of limitation in your life: professionally, financially, academically or even physically. I want to remind you that, in striving for bigger goals, dare to take small sprints. These sprints are usually far from excellent themselves, but they add up to magnificent results.
你可能和我一样,也有个孩子有着特殊需求,或者,你可能在人生中遭遇到不同类型的限制:专业上的,财务上的,学术上的,或甚至身体上的。我想要提醒你,在为更大的目标努力时,要敢于进行小型冲刺计划。这些冲刺计划本身通常不会有出色的结果,但它们通通加起来时却很惊人。
Thank you.
谢谢。