Billy Samuel Mwape: An innovative way to support children with special needs | TED

Transcriber: Joseph Geni Reviewer: Camille Martínez

翻译人员: hope He 校对人员: Bruce Wang

那天是2016年3月3日，

我焦急地等待我老婆生产， 那是我们的第一个孩子。

It is the third of March, 2016,

时间一点一滴地流逝，

我等了几个小时，

and I'm anxiously waiting for my wife to deliver our firstborn son.

也不见孩子要出生的迹象。

过了一会，助产士抱着 一个安静的婴儿出来了，

Seconds turn into minutes,

then hours,

她从我身边跑过， 完全没有理会我。

without a sign of a child coming through.

Then a midwife emerges with a silent baby in her hands,

宝宝怎么没哭呢？

我感到浑身发冷，不安地跟着她。

and she runs past me as though I'm not even there.

Why is he not crying?

她把宝宝放到了一个工作台上，

I'm gripped with chills in my spine as I run after her in terror.

开始给他做心肺复苏。

三十分钟过后，

她安慰我说：

She puts the baby on a bench

“不用担心，

and begins a resuscitation procedure.

他会没事的，

谢谢你的冷静配合。”

Thirty minutes later,

she tells me,

我的孩子被安置在新生儿加护病房，

"Don't worry,

he will be fine,

虽然我无法触摸到他，

and thank you for staying calm."

但我不断地对他说：

“闪闪发光吧，我的儿子。

He was placed in the ICU,

不要放弃。

and though I cannot touch him,

爸爸就守在这里，

你不要害怕。

I repeatedly say,

"Shine on, my son.

这里不是你的归宿，

Don't give up.

坚持住，然后我们一起回家。”

I am here with you,

and you don't have to be scared.

七个月后，

Please pull through and let us go home.

我的孩子确诊患有脑瘫，

You do not belong here."

这是一种非进行性脑损伤综合征，

主要影响机体运动和肌肉协调。

Seven months later,

he would be diagnosed with cerebral palsy,

在美国，每1000个 孩子里大约有2到3个

a nonprogressive brain injury

which primarily affects body movement and muscle coordination.

患有脑瘫。

About two to three children out of 1,000 in the United States

在赞比亚和非洲， 我不太清楚这方面的统计数据，

因为此类记录文件不是很多。

have cerebral palsy.

也许我的这次经历能够改变这一切。

I do not know the statistics for my country and continent,

because there's not much documentation.

我们给宝宝起名为鲁布托，

在我们说本巴语的隆达族人中，

Maybe this could be the journey that changes everything.

这是一个美丽的赞比亚名字，

它的含义是光。

We named him Lubuto,

a beautiful Zambian name from my Lunda tribe

当鲁布托七个月大的时候，

of the Bemba-speaking people,

他的身体缺陷

meaning "light."

主要集中在左半边身体，

By the time he was seven months,

左腿和左臂反应迟缓。

Lubuto's physical impairment

was predominant in the left part of his body.

他握不住东西；

更糟糕的是，由于脑瘫 影响限制了他的唇部肌肉，

Both his left leg and arm were less responsive.

他不会咿呀学语。

He couldn't grasp items;

worse off, couldn't babble his first words

对于普通孩子来说，

像翻身这样自然学会的动作，

because the cerebral palsy shackle affects the muscle in his lips.

我的儿子都不会。

显然，鲁布托无法 感知自己的身体，

Rolling over

and other milestones that come naturally in typical babies,

有些专家告诉我们， 他能够不靠支撑

couldn't be seen in our son.

Lubuto was visibly unaware of his own body.

自己坐直身体， 都是万幸了，

叫我们做好最坏的打算。

And some specialists started preparing us for the worst

我们面前是一座巨大无比， 似乎无法逾越的大山。

by telling us that we were going to be very lucky

if he ever sat upright and unsupported.

我们该怎么办？

Before us was a gigantic, seemingly immovable mountain.

过去的15年，

我一直是一名计算机程序员，

现在，我是一名认证的项目管理专家。

What do we do?

For the past 15 years,

起初，我们痛哭流涕， 不肯接受现实，变得抑郁，

I have worked as a computer programmer,

and now I'm a certified project management professional.

后来，我开始思考

把我编程和项目管理的技能结合起来，

After the denial, crying and partial depression was over,

看看能否改变现状。

I began to wonder

我开始接受事实，

if we could put my programming and project management skills together

向内寻求力量，探索用的上的知识

to try and help the situation.

Acceptance kicked in,

应对这一艰巨挑战。

and I searched from deep within for strength and any available knowledge

我网购了两本书，

熬了无数个通宵

to help with the challenge before us.

研究儿童大脑的神经可塑性。

I ordered two books online

我进行了大量的研究，

and spent countless sleepless nights

researching neuroplasticity in a child's brain.

发现中风患者可以 通过刻苦的康复训练

刺激大脑活跃区的新部位，

My extensive research indicated

从而恢复健康。

that people who have strokes are able to recover

through assiduous rehabilitation programs

我不禁想到：

that activates new parts in the better part of their brains.

这在成年人身上行得通，

或许在小孩身上也可以呢？

This left me with one big question:

If this works for grown people,

我还了解到人类主要在0到5岁之间

why should it not work for a baby?

习得基本的模式，

在那之后，

I also learned that human beings pick up fundamental patterns

习惯就会固化。

我们意识到

mainly between ages zero to five,

and after that,

可能只有5年时间解决 鲁布托的行动缺陷问题，

consolidation of habits happens.

这令人感到不安。

It was scary

to realize that we may just have five years

在这么短的时间内，

我们要充分利用身边有限的资源，

to figure out the immobility of Lubuto.

为他搭建一个支持系统。

On such a tight timeline,

摆在我们面前的是 一个清晰明确的项目，

we needed to build a support system around him,

我们要认真地完成它。

leveraging the limited resources available to us.

为此，我们需要一个 有能力的，自我驱动的团队，

This was a clear project before us

一个敏捷团队。

which needed to be carefully executed,

在需求不断变化的情况下，

and we needed a capable, self-driven team,

“敏捷”是我们用来执行项目的方法，

an agile team.

以此来实现

"Agile" is a methodology that we use

循序渐进的增量成果。

to execute projects with changing requirements

考虑到我们的工作

to achieve progressive results

很大程度上

in increments.

取决于鲁布托的反应和能力，我们需要

We needed to deliver quick results,

快速、逐步地交付成果。

and in pieces,

我拥有的第一个团队成员是 我美丽的老婆：阿比盖尔，

considering our work was largely dependent on Lubuto's responsiveness

她有幸也是一名项目经理。

and capability.

两位项目经理在同一个屋檐下生活，

The first team member I acquired was my beautiful wife Abigail,

你能明白这有多难，对吧？

who is luckily a project manager, too.

我们在赞比亚寻找一名新生儿理疗师，

You know how rough that can be, right?

Two project managers under one roof.

一名职业治疗师

和一名言语治疗师。

We searched around Zambia for a neonatal physiotherapist,

这看起来像是难以完成的任务。

我们制定了

an occupational therapist

一月到三月的计划导图，

and a speech therapist.

刚刚好够用且能按时完成任务。

It felt like mission impossible.

We set road maps

然后在不同的主题下，

of one to three months,

我们明确了一些想要达成的特性， 例如：“我们想要他独自站立和行走。”

just enough planning and just in time.

这些主题包括粗大运动，精细运动，

We then identified features like,

"We want him to stand and walk independently,"

适应能力，

沟通交流，非对称运动

under different themes like gross motor, fine motor,

以及平衡。

接下来，我们设定了冲刺周期，

adaptive skills,

communication, asymmetric movement

在此期间，刺激 鲁布托身体的不同部位。

and balance.

Next, we created sprints

当你在进行一个敏捷项目时，

to work on the stimulation of different parts of Lubuto's body.

你要做一系列的任务导向型工作，

这一时间段统称为“冲刺周期”，

When you're working on an agile project,

计划执行完成后， 团队会回顾冲刺周期。

you do a series of lead-to tasks,

打个比方，我们设定了 目标去刺激他的左臂。

collectively called "sprints,"

which the team reviews after execution.

职业治疗师用不同材质的东西

摩擦他的胳膊。

We, for example, set a goal to stimulate his left arm.

理疗师在他的手臂上刻意做一些动作

Say occupational therapists use different textures

来锻炼他的肌肉。

to rub on his arm.

而我作为自封的综合治疗师，

Physiotherapists make deliberate movements in his arm

则进行逻辑刺激的工作。

to build the muscles.

比如，把他最喜欢的玩具从他的右手

And self-proclaimed general therapists, who was usually myself,

拿到他面前，再移动到他的左手边，

engage in logical stimulations

like slowly moving his favorite toy from his right hand

从而激起他左臂的运动。

across and by in front of him to his left side

在每一周的末尾，

我们都会回顾团队的成果：

to prompt movement in his left arm.

职业治疗师做的怎么样？

理疗师做的怎么样？

And at the end of each week,

刺激工作完成的如何？

we would review our results as a team:

我们达成目标了吗？

How did OT go?

How did physio go?

因为对于一个敏捷项目来说， 频繁的交付成果是非常重要的，

How did stimulation go?

Did we meet our goal?

所以为了更快地跟进情况， 我们建了一个WhatsApp群。

Because frequent communication is very important on an agile project,

起初会有缺陷，然后继续完善，

这是敏捷项目的一大特点。

we created a WhatsApp group for quicker updates.

我们要充分利用这一点，因为 我们的工作内容主要取决于他的反应。

Failing early and picking up

is a special characteristic of agility,

幸运的是，鲁布托是一个战士，

and we leveraged that because our work is largely dependent on his response.

他有着了不起的毅力。

Luckily, Lubuto is a fighter,

激活他手臂的肌肉， 我们完成了这一目标，

然后我们要激活他的腿部肌肉。

and his determination is out of this world.

这与之前所进行的活动完全不同，

After we achieved the goal of activating his arm,

但又有相似的迭代过程。

we then moved to his leg.

The activities were totally different,

关于大脑的可塑性，我了解到

最好等鲁布托准备好了以后 再学习某些技能，

but followed the similar iterative process.

虽然这样会延误他的进程，

I would come to learn in brain plasticity

但他必须学会正确的方式。

that Lubuto was better off learning certain skills when he was ready,

在针对我儿子设定的敏捷管理项目中，

even if it meant delaying him,

because he had to learn it right.

意外迎来了一位新成员。

While working and managing Lubuto as an agile project,

哦！她是鲁布托的妹妹：亚维拉。

在管理项目进程中， 因为我们给了哥哥大量的关注，

a new team member popped up.

Oh! It's Lubuto's sister, Yawila.

我们不知道怎么做才能

既不打扰到他，

又不让妹妹觉得自己被忽视了。

We had no idea how we were going to manage the process

我们继续着每天的迭代活动，

without disturbing him

while not making the sister feel neglected

现在鲁布托能够用他僵直的腿行走了。

because we were giving the brother a lot of attention.

而我则面朝着他，边后退边鼓励他，

Our daily iterations continued,

因为我要和他用眼神交流，

and now Lubuto was able to walk on his stiff legs.

我唱着他最喜欢的歌，

With me cheerleading from the front as I walked backwards,

我俩在卧室和厨房之间来回踱步。

because I needed to keep eye contact with him,

然后我们去了南非，

I sang his favorite songs,

as we oscillated between our bedroom and the kitchen.

给团队招募了一名神经运动治疗师，

外加高压氧治疗。

We then traveled to South Africa

and introduced a neuromovement therapist

这几段冲刺周期变得短了许多， 我们主要专注于他的大脑训练，

to the team,

coupled with hyperbaric oxygen therapy.

通过一些小幅度的身体动作

教他感受自己的身体。

These sprints were much shorter and focused on his brain,

泰瑞表现得相当出色。

teaching him about his own body

鲁布托开始能够打开膝盖和髋部。

through small body movements.

到了第二周，

Terry did a miraculous job.

他奔跑时，可以保持更好的平衡了。

Lubuto started opening his knees in unison with his hips.

他大脑中有新的神经通路得到激活，

And in our second week,

he was able to run with better balance.

因此，他开始能故意制造 声响来与我们交流了。

He started making intentional sounds to communicate with us

带着这些不可思议的成果， 我们回到了赞比亚。

as a result of the new neuropaths firing.

猜猜是谁卓有成效地推进了治疗工作？

是团队的新成员。

We returned to Zambia with amazing results.

鲁布托开始模仿妹妹，

没过多久，他就从她身上 学到了一些东西，好坏都有，

And guess who effectively picked up the therapy?

The new team member.

比他从团队的治疗师那里 学到的还要多。

Lubuto started mimicking the sister,

and soon he was learning more things good and bad from the sister

为了确保他的治疗方向是正确的，

我们和古德森老师一起 开设了一个独特的课程，

than he was learning from his team of therapists.

它囊括了所有的治疗方法。

To make sure that he stays on track,

拥有这些知识， 并且能够实际地运用它们，

we built a unique curriculum that incorporates all the therapies

with teacher Goodson.

我们是何其的幸运。

We've been blessed to have the knowledge before us

并不是每一个育有 特殊需求孩子的家庭，

都像我们这样幸运。

and be able to practically apply it.

我们还有一些待办列表，

这是一个美妙的敏捷术语，用于 把无法完成的任务推迟到以后，

Not all families with special needs children

are as fortunate as we are.

对于鲁布托来说，还要进行 控制流口水和如厕训练。

We still have backlog stories,

which is a fancy agile term for pushing failure to a later date,

但在每天重复的细致训练中，

in Lubuto's case, drooling and potty training.

我们改善了他整个左半边的身体机能，

But in iterative, little daily activities,

从胳膊到

we managed to improve the entire left part of Lubuto's body --

每一根手指，

从腿到脚趾。

from the arm,

他开始能够翻身，

to one finger to the other,

独自坐立。

from the leg to the toes.

他可以爬行，

Lubuto began to roll over.

站立，

走路，

奔跑。

He began to independently sit.

现在他身体更加协调了， 可以和我踢足球。

He was able to crawl,

stand,

walk,

我和我老婆的心都要融化了，

run,

and now he plays soccer with me in a more coordinated manner.

我们见证了这种实验研究法

所达成的成果，简直不可思议，

This has left my wife's heart and mine melting,

令我们惊叹不已。

现在我们骄傲地称呼 自己为“敏捷家长”。

and we've been blown away

by the unbelievable results we've witnessed

as a result of this experimental methodology.

你也许和我一样，照顾着 有特殊需求的孩子，

And now, we proudly call ourselves "agile parents."

又或许你正面临着人生的各种束缚：

You may be a parent with a special needs child like me,

职业上的，

经济上的，

学业上的，

or you could be facing different types of limitation in your life:

甚至身体上的。

我想提醒你，在追求远大的目标时，

professionally,

financially,

academically

要敢于采取细分的冲刺计划。

or even physically.

I want to remind you that, in striving for bigger goals,

通常来说，这些冲刺计划 本身远谈不上多出色，

dare to take small sprints.

但他们加在一起会有非凡的成效。

These sprints are usually far from excellent themselves,

谢谢大家。

but they add up to magnificent results.

Thank you.