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BillySamuelMwape_2020S-_用创新的方式支援有特殊需求的孩子_-

It is the third of March, 2016, and I'm anxiously waiting for my wife to deliver our firstborn son. 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。
Seconds turn into minutes, then hours, without a sign of a child coming through. 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。
Then a midwife emerges with a silent baby in her hands, and she runs past me as though I'm not even there. 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。
anxiously:adv.不安地,忧虑地; firstborn:n.长子;初生儿;长女;adj.头生的;第一胎生的; midwife:n.助产士;促成因素;vt.助胎儿出生;促成; emerges:vi.浮现;摆脱;暴露;
Why is he not crying? 为什么孩子没有在哭?
I'm gripped with chills in my spine as I run after her in terror. 我恐惧地跟在她后面跑着, 紧握双拳,背脊发凉。
She puts the baby on a bench and begins a resuscitation procedure . 她把宝宝放在长椅上, 开始执行抢救流程。
Thirty minutes later, she tells me, "Don't worry, he will be fine, and thank you for staying calm." 三十分钟后, 她告诉我: 「别担心, 他会没事的, 谢谢你保持冷静。」
gripped:vt.紧咬,夹住;紧握(grip过去时形式); chills:n.寒冷; v.使变冷; spine:n.脊柱,脊椎;刺;书脊; resuscitation:n.复苏;复兴;复活; procedure:n.步骤;手术;(商业、法律或政治上的)程序;
He was placed in the ICU, and though I cannot touch him, 他被送到加护病房, 虽然我无法触碰他,
I repeatedly say, "Shine on, my son. 但我不断重覆说: 「继续发光,我的儿子。
Don't give up. 别放弃。
I am here with you, and you don't have to be scared. 我在这里陪着你, 你不用害怕。
Please pull through and let us go home. 拜托,要挺过去,我们一起回家。
You do not belong here." 你不属于这里。」[01:20]
repeatedly:adv.反复地;再三地;屡次地; pull through:n.擦枪筒用的带绳刷子;
Seven months later, he would be diagnosed with cerebral palsy , a nonprogressive brain injury which primarily affects body movement and muscle coordination . 七个月后, 他被诊断出脑性麻痹, 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。
About two to three children out of 1,000 in the United States have cerebral palsy. 在美国,大约有千分之二到三的孩子 患有脑性麻痹。
I do not know the statistics for my country and continent , because there's not much documentation . 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。
diagnosed:v.诊断(疾病);判断(问题的原因);(diagnose的过去分词和过去式) cerebral palsy:n.大脑性瘫痪; injury:n.伤害,损害;受伤处; primarily:adv.首先;主要地,根本上; muscle:n.肌肉;力量;v.加强;使劲搬动;使劲挤出; coordination:n.协调,调和;对等,同等; United:adj.联合的; v.联合,团结; (unite的过去分词和过去式) statistics:n.统计数字;统计资料;统计学;(statistic的复数) continent:n.大陆,洲,陆地;adj.自制的,克制的; documentation:n.文件,证明文件,史实,文件编制;
Maybe this could be the journey that changes everything. 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." 我们将他取名为鲁布托, 那是美丽的尚比亚名字, 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」。
By the time he was seven months, 当鲁布托七个月大时,
journey:n.旅行;行程;vi.旅行; tribe:n.部落;族;宗族;一伙;
Lubuto's physical impairment was predominant in the left part of his body. 他的身体损伤 主要影响了他的左半身。
Both his left leg and arm were less responsive . 他的左脚和左手臂反应都比较差。
He couldn't grasp items; worse off, couldn't babble his first words because the cerebral palsy shackle affects the muscle in his lips. 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, 因为脑性麻痹也影响了 他嘴唇的肌肉。
physical:adj.[物]物理的;身体的;物质的;符合自然法则的;n.体格检查; impairment:n.损伤,损害; predominant:adj.显著的;明显的;盛行的;占优势的;n.特优生物 responsive:adj.响应的;应答的;回答的; grasp:n.抓住;理解;控制;v.抓住;领会; babble:v.喋喋不休;呀呀学语;作潺潺声;泄露;n.含糊不清的话;胡言乱语;潺潺声; shackle:n.束缚;桎梏;脚镣;vt.束缚;加枷锁;
Rolling over and other milestones that come naturally in typical babies, couldn't be seen in our son. 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。
Lubuto was visibly unaware of his own body. 鲁布托很明显 无法意识到自己的身体。
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 . 有些专家开始幫我们做最坏的准备, 告诉我们,如果他不用支撑能坐直, 我们就算非常幸运了。
milestones:n.里程碑;时间表; naturally:adv.自然地;自然而然地;轻而易举;天生地;大方地; typical:adj.典型的;特有的;象征性的; visibly:adv.明显地;显然;看得见地; unaware:adj.不知道的,无意的;未察觉到的;adv.意外地;不知不觉地; upright:n.立柱;adj.直立的;挺直的;竖直的;垂直的;adv.竖立着;垂直着; unsupported:adj.无支持的,无赞助的;未经证实的;没有支撑的;
Before us was a gigantic , seemingly immovable mountain. 在我们面前的,是一座似乎无法搬移的巨山。
What do we do? 我们能做什么?
For the past 15 years, 在过去十五年间,
I have worked as a computer programmer, and now I'm a certified project management professional . 我都在担任电脑程式设计师, 现在,我是有证照的 专業专案管理人员。
After the denial , crying and partial depression was over, 在否认、哭泣, 和部分忧郁结束之后,[03:14]
gigantic:adj.巨大的,庞大的; seemingly:adv.看来似乎;表面上看来; immovable:adj.不动的;固定的;不改变的; certified:adj.被证明了的; v.(尤指书面)证明,证实; (certify的过去式和过去分词) management:n.管理;管理人员;管理部门;操纵;经营手段; professional:adj.专业的;职业的;职业性的;n.专业人员;职业运动员; denial:n.否认;否定;剥夺(应有的权利);拒不承认(令人不快、痛苦的事); partial:adj.部分的;不完整的;片面的;有偏见的; depression:n.沮丧;洼地;不景气;忧愁;
I began to wonder if we could put my programming and project management skills together to try and help the situation. 我开始思考我们是否 能把我的程式设计 和专案管理技能整合起来, 试图协助改善这个状况。
Acceptance kicked in, and I searched from deep within for strength and any available knowledge to help with the challenge before us. 我开始能接受, 我往内心深处寻找力量 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. 我在线上订购了两本书, 花了无数不眠的夜晚, 研究孩童大脑的神经可塑性。
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. 经过广泛的研究,我发现, 中风的人可以透过 照顾周到的康复计画来复元, 他们大脑较好的那一部分当中 有些新部分可以被活化,
Acceptance:n.验收;接受;认可;承认; countless:adj.无数的;数不尽的; sleepless:adj.失眠的;不休息的;警觉的;永不停息的; neuroplasticity:n.神经可塑性; extensive:adj.广泛的;大量的;广阔的; indicated:v.表明;显示;象征;暗示;示意;(indicate的过去分词和过去式) strokes:n.中风; v.轻抚; (stroke的第三人称单数和复数) assiduous:adj.刻苦的,勤勉的; rehabilitation:n.康复;恢复;善后;平反;复权; activates:v.[电子][物]激活;活化(activate的三单形式);
This left me with one big question: 这让我产生了一个大问题:
If this works for grown people, why should it not work for a baby? 如果这个方法对成人有用, 对婴儿为什么不会用有?
I also learned that human beings pick up fundamental patterns mainly between ages zero to five, and after that, consolidation of habits happens. 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。
It was scary to realize that we may just have five years to figure out the immobility of Lubuto. 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. 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。
fundamental:n.基础; adj.十分重大的; mainly:adv.大多;大部分;主要地;首要地; consolidation:n.巩固;合并;团结; immobility:n.不动,固定; timeline:n.时间轴,时间线;大事年表; leveraging:v.利用贷款进行投机;(leverage的现在分词) limited:adj.有限的; n.高级快车; v.限制; (limit的过去分词和过去式) resources:n.[计][环境]资源; v.向…提供资金(resource的第三人称单数);
This was a clear project before us which needed to be carefully executed , and we needed a capable , self-driven team, an agile team. 在我们面前的,很明显是一个专案, 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 . 「敏捷」是一种方法论,我们用它 来执行需求不断改变的专案, 以一步一步达成渐进式的结果。
We needed to deliver quick results, and in pieces, considering our work was largely dependent on Lubuto's responsiveness and capability . 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。
executed:v.(尤指依法)处决,处死;实行;执行;实施;(execute的过去分词和过去式) capable:adj.能干的,能胜任的;有才华的; self-driven:adj.自行驱动的;自励的; agile:adj.敏捷的;机敏的;活泼的; methodology:n.方法学,方法论; progressive:adj.进步的;先进的;开明的;稳步的;n.进步人士;开明人士;改革派; increments:n.[数]增量(incremment的复数);增加数; largely:adv.主要地;大部分;大量地; dependent on:依赖于;依靠; responsiveness:n.响应能力;有同情心; capability:n.才能,能力;性能,容量;
The first team member I acquired was my beautiful wife Abigail, who is luckily a project manager, too. 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,她也是专案经理。
You know how rough that can be, right? 你们知道那有多难搞吧?
Two project managers under one roof. 两个专案经理同在一个屋檐下。
We searched around Zambia for a neonatal physiotherapist , an occupational therapist and a speech therapist. 我们在尚比亚寻找 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。
acquired:adj.习得的; v.获得; (acquire的过去分词和过去式) neonatal:adj.新生的;初生的; physiotherapist:n.理疗家;理疗医师; occupational therapist:n.职业治疗师(利用特定的技能训练帮助病患者或受伤者恢复健康);
It felt like mission impossible. 这感觉好像是个不可能的任务。
We set road maps of one to three months, just enough planning and just in time. 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。
We then identified features like, "We want him to stand and walk independently ," 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」,
mission:n.使命,任务;代表团;布道;v.派遣;向…传教; identified:v.确认;认出;找到;发现;说明身份;(identify的过去式和过去分词) independently:adv.独立地;自立地;
under different themes like gross motor, fine motor, adaptive skills, communication, asymmetric movement and balance. 归类在不同的主题下,如粗大动作、 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. 接着,我们设计出刺激鲁布托 各个身体部位的冲刺计画。
When you're working on an agile project, you do a series of lead-to tasks, collectively called "sprints," 在做敏捷专案时, 要做一连串的过程任务, 合起来就叫冲刺计画,
gross:adj.总共的;粗野的;恶劣的;显而易见的;v.总共收入;n.总额,总数; adaptive:adj.适应的,适合的; asymmetric:adj.不对称的;非对称的; sprints:n.短跑(sprint的复数);冲刺跑;v.奋力而跑(sprint的第三人称单数形式); stimulation:n.刺激;激励,鼓舞; series:n.系列,连续;[电]串联;级数;丛书; collectively:adv.共同地,全体地;
which the team reviews after execution . 团队会在这个冲刺计画 执行之后进行檢讨。
We, for example, set a goal to stimulate his left arm. 比如,我们设定的目标 是要刺激他的左手臂。
Say occupational therapists use different textures to rub on his arm. 职能治疗师用不同的布料 去摩擦他的手臂。
Physiotherapists make deliberate movements in his arm to build the muscles . 物理治疗师刻意 用他的手来做某些动作, 以锻炼肌肉。
reviews:n.综述; v.回顾; execution:n.执行,实行;完成;死刑; stimulate:v.刺激;激发;促进;激励; therapists:n.治疗专家(therapist的复数); textures:n.纹理;材质(texture的复数);v.使具有某种结构(texture的三单形式); rub:n.擦;抹;搓;揉;v.擦;磨;搓;(使)相互磨擦; deliberate:v.深思熟虑;仔细考虑;反复思考;adj.故意的;蓄意的;存心的;不慌不忙的; muscles:n.肌肉(muscle的复数);
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. 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: 每周结束时, 我们会做团队讨论, 檢讨我们的结果:
How did OT go? 职能治疗做得如何?
How did physio go? 物理治疗做得如何?
How did stimulation go? 刺激做得如何?[07:32]
self-proclaimed:adj.自称的; engage:v.吸引,占用;使参加;雇佣;使订婚;预定; logical:adj.合逻辑的,合理的;逻辑学的; stimulations:n.刺激;激励,鼓舞; prompt:n.提示; v.提示; adj.迅速; v.准时地;
Did we meet our goal? 我们有没有达到目标?
Because frequent communication is very important on an agile project, we created a WhatsApp group for quicker updates . 因为在敏捷开发专案中, 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 . 在初期就失败并再接再励 是敏捷专案开发的一个特色, 我们采用这种方式是因为
Luckily, Lubuto is a fighter, and his determination is out of this world . 幸运的是,鲁布托是个斗士, 他的决心可说是超凡。
frequent:adj.频繁的;经常发生的;v.常到(某处); WhatsApp:智能手机;联络电话; updates:v.使现代化; n.现代化; (update的第三人称单数和复数) characteristic:n.特征;特点;品质;adj.典型的;独特的;特有的; agility:n.敏捷;灵活;机敏; leveraged:adj.杠杆的; v.举债经营; (leverage的过去式和过去分词); response:n.响应;反应;回答; determination:n.测定;确定;决心;计算; out of this world:出色的,了不起的;极好的;
After we achieved the goal of activating his arm, we then moved to his leg. 在达成「活化他的手臂」 这个目标之后, 我们接着处理他的腿。
The activities were totally different, but followed the similar iterative process . 要使用的活动完全不同, 但递回重覆过程很类似。
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. 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。
activating:v.使活动(activate的ing形式); iterative:adj.[数]迭代的;重复的,反复的;n.反复体; process:v.处理;加工;列队行进;n.过程,进行;方法,adj.经过特殊加工(或处理)的;
While working and managing Lubuto as an agile project, a new team member popped up. 当我们把鲁布托当作 敏捷专案开发来进行和管理时, 一位新团队成员冒出来了。
Oh! It's Lubuto's sister, Yawila. 喔!是鲁布托的妹妹,雅薇拉。
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. 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. 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。
With me cheerleading from the front as I walked backwards, because I needed to keep eye contact with him, 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,
disturbing:adj.引起烦恼的;令人不安的;v.打扰;干扰;搅乱;使不安;(disturb的现在分词) neglected:adj.被忽略的; v.忽略; (neglect的过去分词和过去式) iterations:n.迭代次数;反复(iteration的复数); stiff:adj.呆板的; v.僵硬地; n.死尸; v.诈骗; cheerleading:n.带领啦啦队; contact:n.接触,联系;v.使接触,联系;
I sang his favorite songs, as we oscillated between our bedroom and the kitchen. 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 . 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。
These sprints were much shorter and focused on his brain, teaching him about his own body through small body movements. 这些冲刺计画更短许多, 透过小小的身体动作 教导他认识他自己的身体。
oscillated:vt.使振荡;使振动;使动摇;vi.振荡;摆动;犹豫; hyperbaric:adj.施压力以供氧气的;高比重的; therapy:n.治疗,疗法;
Terry did a miraculous job. 泰瑞做得非常出色。
Lubuto started opening his knees in unison with his hips . 鲁布托开始配合他的臀部 打开他的膝盖。
And in our second week, he was able to run with better balance. 在第二周时, 他能够更平衡地跑步了。
He started making intentional sounds to communicate with us as a result of the new neuropaths firing. 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。
Terry:n.厚绒布;毛毛圈;adj.起毛毛圈的; miraculous:adj.不可思议的,奇迹的; unison:n.和谐;齐唱;同度;[声]同音; hips:n.臀部;髋;臀部…的;野蔷薇果(hip的复数) intentional:adj.故意的;蓄意的;策划的; as a result:结果; neuropaths:n.神经病患者;神经质者;(neuropath的复数)
We returned to Zambia with amazing results. 我们带着惊人的结果回到尚比亚。
And guess who effectively picked up the therapy? 猜猜谁接手了治疗?
The new team member. 我们的新团队成员。
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. 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。
To make sure that he stays on track , we built a unique curriculum that incorporates all the therapies with teacher Goodson. 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. 我们很有福气,能取得这么多知识, 且能实际运用它们。
mimicking:v.模仿人的言行举止;做滑稽模仿;像,似;(mimic的现在分词) track:n.小道;足迹;车辙;轨道;v.追踪;跟踪; unique:adj.独特的,稀罕的;[数]唯一的;n.独一无二的人或物; curriculum:n.课程;总课程; incorporates:组成公司; therapies:n.治疗方法(therapy复数形式); blessed:adj.神圣的; v.求上帝降福于; (bless的过去分词和过去式) practically:adv.实际地;几乎;事实上; apply:v.申请;涂,敷;应用;适用;请求;
Not all families with special needs children are as fortunate as we are. 很多家庭也有这种特殊需求的孩子, 却没我们那么幸运。
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. 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。
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 . 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。
special needs:n.(智力或身体障碍者的)特殊需求; fortunate:adj.幸运的;交好运的;吉利的; backlog:n.[管理]积压的工作;积压待办的事务;大木材;vt.储备;把…积压起来; fancy:n.幻想; adj.想象的; v.想象; drooling:v.垂涎;淌口水;(对…)垂涎欲滴,过分痴迷(drool的现在分词) potty:adj.傻气的; n.便壶; improve:v.改进;改善; toes:n.脚趾;足尖部;有…脚趾的;v.用脚尖走;(toe的第三人称单数和复数)
Lubuto began to roll over. 鲁布托开始会打滚。
He began to independently sit. 他开始靠自己坐好。
He was able to crawl , stand, walk, run, and now he plays soccer with me in a more coordinated manner. 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。
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. 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。
crawl:v.爬;匍匐行进;(昆虫)爬行;缓慢行进;n.爬泳;缓慢的速度;自由泳; coordinated:v.使协调;使相配合;搭配,协调;(coordinate的过去分词和过去式) melting:adj.感人的;v.(使)熔化,融化;(melt的现在分词) blown away:轻轻吹走(歌曲名);零点爆破(电影名); unbelievable:adj.(非正式)难以置信的;不可信的 witnessed:v.当场看到,目击;见证;作证;(witness的过去式和过去分词) experimental:adj.实验的;根据实验的;试验性的;
And now, we proudly call ourselves "agile parents." 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. 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: 专業上的,财务上的, 学术上的,或甚至身体上的。
proudly:傲慢地 limitation:n.限制;局限;限度;控制; professionally:adv.专业地;内行地; financially:adv.财政上;金融上; academically:adv.学术上;学业上;
I want to remind you that, in striving for bigger goals, dare to take small sprints. 我想要提醒你, 要敢于进行小型冲刺计画。
These sprints are usually far from excellent themselves, but they add up to magnificent results. 这些冲刺计画本身 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。
remind:v.提醒;使想起; striving:n.努力;奋斗;v.努力;奋斗;力争;力求;(strive的现在分词) magnificent:adj.高尚的;壮丽的;华丽的;宏伟的;