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

Transcriber: Joseph Geni Reviewer: Camille Martínez

譯者: Lilian Chiu 審譯者: Helen Chang

It is the third of March, 2016,

2016 年 3 月 3 日，

我焦慮地等著我太太生產， 這個兒子是我們的第一胎。

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

Seconds turn into minutes,

幾秒鐘變成了幾分鐘，

then hours,

接著幾小時，

without a sign of a child coming through.

都沒有孩子要出來的徵兆。

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

接著，一位產婆出現， 手中抱著一個安靜的寶寶，

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

她從我身邊跑過去， 好像我不在那裡一樣。

Why is he not crying?

為什麼孩子沒有在哭？

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

我恐懼地跟在她後面跑著， 緊握雙拳，背脊發涼。

She puts the baby on a bench

她把寶寶放在長椅上，

and begins a resuscitation procedure.

開始執行搶救流程。

Thirty minutes later,

三十分鐘後，

她告訴我：

she tells me,

"Don't worry,

「別擔心，

he will be fine,

他會沒事的，

and thank you for staying calm."

謝謝你保持冷靜。」

He was placed in the ICU,

他被送到加護病房，

and though I cannot touch him,

雖然我無法觸碰他，

I repeatedly say,

但我不斷重覆說：

"Shine on, my son.

「繼續發光，我的兒子。

Don't give up.

別放棄。

I am here with you,

我在這裡陪著你，

and you don't have to be scared.

你不用害怕。

Please pull through and let us go home.

拜託，要挺過去，我們一起回家。

You do not belong here."

你不屬於這裡。」

Seven months later,

七個月後，

he would be diagnosed with cerebral palsy,

他被診斷出腦性麻痺，

a nonprogressive brain injury

一種非進行性的大腦傷害，

which primarily affects body movement and muscle coordination.

主要會影響到身體活動和肌肉協調。

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

在美國，大約有千分之二到三的孩子

have cerebral palsy.

患有腦性麻痺。

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

我不知道在我的國家、 我的大陸，統計數據是什麼，

because there's not much documentation.

因為沒有那麼多文件記錄。

Maybe this could be the journey that changes everything.

也許，這會是改變一切的旅程。

We named him Lubuto,

我們將他取名為魯布托，

a beautiful Zambian name from my Lunda tribe

那是美麗的尚比亞名字， 出自我所屬的盧巴部落，

of the Bemba-speaking people,

這個部落說的是本巴語，

meaning "light."

魯布托的意思是「光」。

當魯布托七個月大時，

By the time he was seven months,

Lubuto's physical impairment

他的身體損傷

was predominant in the left part of his body.

主要影響了他的左半身。

Both his left leg and arm were less responsive.

他的左腳和左手臂反應都比較差。

He couldn't grasp items;

他無法抓取物品；

worse off, couldn't babble his first words

更糟的是，他無法牙牙學語 說出他的第一個字，

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

因為腦性麻痺也影響了 他嘴脣的肌肉。

Rolling over

翻身

and other milestones that come naturally in typical babies,

以及其他一般寶寶 很自然會達到的里程碑，

couldn't be seen in our son.

我們的兒子都無法做到。

Lubuto was visibly unaware of his own body.

魯布托很明顯 無法意識到自己的身體。

And some specialists started preparing us for the worst

有些專家開始幫我們做最壞的準備，

by telling us that we were going to be very lucky

告訴我們，如果他不用支撐能坐直，

if he ever sat upright and unsupported.

我們就算非常幸運了。

Before us was a gigantic, seemingly immovable mountain.

在我們面前的，

是一座似乎無法搬移的巨山。

What do we do?

我們能做什麼？

For the past 15 years,

在過去十五年間，

I have worked as a computer programmer,

我都在擔任電腦程式設計師，

and now I'm a certified project management professional.

現在，我是有證照的 專業專案管理人員。

After the denial, crying and partial depression was over,

在否認、哭泣， 和部分憂鬱結束之後，

I began to wonder

我開始思考我們是否

if we could put my programming and project management skills together

能把我的程式設計 和專案管理技能整合起來，

to try and help the situation.

試圖協助改善這個狀況。

Acceptance kicked in,

我開始能接受，

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

我往內心深處尋找力量

和任何可得的知識，

to help with the challenge before us.

來協助處理我們眼前的挑戰。

I ordered two books online

我在線上訂購了兩本書，

花了無數不眠的夜晚，

and spent countless sleepless nights

researching neuroplasticity in a child's brain.

研究孩童大腦的神經可塑性。

My extensive research indicated

經過廣泛的研究，我發現，

that people who have strokes are able to recover

中風的人可以透過

through assiduous rehabilitation programs

照顧周到的康復計畫來復元，

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

他們大腦較好的那一部分當中 有些新部分可以被活化，

This left me with one big question:

這讓我產生了一個大問題：

If this works for grown people,

如果這個方法對成人有用，

why should it not work for a baby?

對嬰兒為什麼不會用有？

I also learned that human beings pick up fundamental patterns

我也發現，人類主要是在零到五歲

這段時間學會基本的模式，

mainly between ages zero to five,

and after that,

在那之後，

consolidation of habits happens.

習慣就會開始固化形成。

It was scary

這很讓人害怕，

to realize that we may just have five years

因為發現我們可能只有五年時間

to figure out the immobility of Lubuto.

來想辦法改善魯布托的活動障礙。

On such a tight timeline,

在這麼緊迫的時間壓力下，

we needed to build a support system around him,

我們得在他周圍 打造出一個支援系統，

leveraging the limited resources available to us.

好好發揮我們能取得的有限資源。

This was a clear project before us

在我們面前的，很明顯是一個專案，

which needed to be carefully executed,

我們得小心地執行它，

and we needed a capable, self-driven team,

還需要一個有能力、自主的、

an agile team.

敏捷的團隊。

"Agile" is a methodology that we use

「敏捷」是一種方法論，我們用它

to execute projects with changing requirements

來執行需求不斷改變的專案，

to achieve progressive results

以一步一步達成漸進式的結果。

in increments.

We needed to deliver quick results,

我們需要快速產出結果，

and in pieces,

且是零散的，

considering our work was largely dependent on Lubuto's responsiveness

因為魯布托的回應狀況和能力

對我們的工作任務影響非常大。

and capability.

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

我找來的第一位團隊成員 是我美麗的太太艾碧嘉，

who is luckily a project manager, too.

很幸運的是，她也是專案經理。

You know how rough that can be, right?

你們知道那有多難搞吧？

Two project managers under one roof.

兩個專案經理同在一個屋簷下。

We searched around Zambia for a neonatal physiotherapist,

我們在尚比亞尋找 一名新生兒物理治療師、

an occupational therapist

一名職能治療師，

and a speech therapist.

以及一位語言治療師。

It felt like mission impossible.

這感覺好像是個不可能的任務。

We set road maps

我們設定的藍圖是一到三個月。

of one to three months,

just enough planning and just in time.

剛好能在時間內做足夠的規劃。

We then identified features like,

接著，我們找出想要達成的特性：

"We want him to stand and walk independently,"

「我們希望他能獨立站起來行走」，

under different themes like gross motor, fine motor,

歸類在不同的主題下，如粗大動作、

精細動作、適應技能、

adaptive skills,

communication, asymmetric movement

溝通、對稱動作，

以及平衡。

and balance.

Next, we created sprints

接著，

我們設計出刺激魯布托

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

各個身體部位的衝刺計畫。

When you're working on an agile project,

在做敏捷專案時，

you do a series of lead-to tasks,

要做一連串的過程任務，

collectively called "sprints,"

合起來就叫衝刺計畫，

which the team reviews after execution.

團隊會在這個衝刺計畫 執行之後進行檢討。

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

比如，我們設定的目標 是要刺激他的左手臂。

Say occupational therapists use different textures

職能治療師用不同的布料 去摩擦他的手臂。

to rub on his arm.

Physiotherapists make deliberate movements in his arm

物理治療師刻意 用他的手來做某些動作，

to build the muscles.

以鍛鍊肌肉。

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

而自稱的一般治療師，通常就是我，

engage in logical stimulations

會採用邏輯刺激，

like slowly moving his favorite toy from his right hand

比如緩緩地將他最愛的玩具

從他的右手拿走， 移過他面前再到他的左側，

across and by in front of him to his left side

to prompt movement in his left arm.

以促進他左手臂的活動。

And at the end of each week,

每週結束時，

we would review our results as a team:

我們會做團隊討論， 檢討我們的結果：

How did OT go?

職能治療做得如何？

How did physio go?

物理治療做得如何？

How did stimulation go?

刺激做得如何？

Did we meet our goal?

我們有沒有達到目標？

Because frequent communication is very important on an agile project,

因為在敏捷開發專案中， 經常溝通非常重要，

we created a WhatsApp group for quicker updates.

我們建立了一個 WhatsApp 群組， 方便我們快速提供新訊息。

Failing early and picking up

在初期就失敗並再接再勵

is a special characteristic of agility,

是敏捷專案開發的一個特色，

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

我們採用這種方式是因為

他的反應對我們的工作影響甚鉅。

Luckily, Lubuto is a fighter,

幸運的是，魯布托是個鬥士，

and his determination is out of this world.

他的決心可說是超凡。

After we achieved the goal of activating his arm,

在達成「活化他的手臂」 這個目標之後，

we then moved to his leg.

我們接著處理他的腿。

The activities were totally different,

要使用的活動完全不同，

but followed the similar iterative process.

但遞迴重覆過程很類似。

I would come to learn in brain plasticity

我從大腦神經可塑性漸漸學到

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

魯布托最好是在他準備好時 再去學習某些技能，

even if it meant delaying him,

即使那樣會延誤也沒關係， 因為他必須要學正確。

because he had to learn it right.

While working and managing Lubuto as an agile project,

當我們把魯布托當作 敏捷專案開發來進行和管理時，

a new team member popped up.

一位新團隊成員冒出來了。

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

喔！是魯布托的妹妹，雅薇拉。

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

我們不知道要如何在 不打擾到他的情況下進行流程，

without disturbing him

while not making the sister feel neglected

同時也不要因為給他很多注意力

because we were giving the brother a lot of attention.

而讓他的妹妹覺得被忽視。

Our daily iterations continued,

我們的日常重覆遞迴持續進行，

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

現在魯布托能夠 用他僵硬的腳行走了。

With me cheerleading from the front as I walked backwards,

我在他前面倒著走路 引導他，為他加油，

because I needed to keep eye contact with him,

因為我需要保持和他眼神交會，

I sang his favorite songs,

我會唱他最喜歡的歌，

as we oscillated between our bedroom and the kitchen.

同時在臥室和廚房之間 搖擺地來回走。

We then traveled to South Africa

接著，我們前往南非，

and introduced a neuromovement therapist

找了一位神經運動治療師加入團隊，

to the team,

coupled with hyperbaric oxygen therapy.

結合高壓氧治療。

These sprints were much shorter and focused on his brain,

這些衝刺計畫更短許多，

且把焦點放在他的大腦，

teaching him about his own body

透過小小的身體動作

教導他認識他自己的身體。

through small body movements.

Terry did a miraculous job.

泰瑞做得非常出色。

Lubuto started opening his knees in unison with his hips.

魯布托開始配合他的臀部 打開他的膝蓋。

And in our second week,

在第二週時，

he was able to run with better balance.

他能夠更平衡地跑步了。

He started making intentional sounds to communicate with us

他開始刻意發出 一些聲音來和我們溝通，

as a result of the new neuropaths firing.

這是新的神經通路連結之後的結果。

We returned to Zambia with amazing results.

我們帶著驚人的結果回到尚比亞。

And guess who effectively picked up the therapy?

猜猜誰接手了治療？

The new team member.

我們的新團隊成員。

Lubuto started mimicking the sister,

魯布托開始模仿他的妹妹，

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

很快的，他向他的妹妹 學到的好事與壞事

than he was learning from his team of therapists.

已經比向治療師團隊學到的還多。

To make sure that he stays on track,

為了確保他不偏離正軌，

we built a unique curriculum that incorporates all the therapies

我們和古德森老師合作，

打造一門整合所有治療的獨特課程。

with teacher Goodson.

We've been blessed to have the knowledge before us

我們很有福氣，能取得這麼多知識，

and be able to practically apply it.

且能實際運用它們。

Not all families with special needs children

很多家庭也有這種特殊需求的孩子， 卻沒我們那麼幸運。

are as fortunate as we are.

We still have backlog stories,

我們還有待改善事項未完成，

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

待改進事項的目的是要延後失敗，

in Lubuto's case, drooling and potty training.

這在魯布托的例子中 包括流口水和便便訓練。

But in iterative, little daily activities,

但，在不斷重覆的日常小活動中，

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

我們得以改善了 魯布托的整個左半身——

from the arm,

從手臂，

to one finger to the other,

到每一隻手指，

from the leg to the toes.

從腿到腳趾。

Lubuto began to roll over.

魯布托開始會打滾。

He began to independently sit.

他開始靠自己坐好。

He was able to crawl,

他也會爬行，

stand,

會站立，會行走，會跑步，

walk,

run,

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

現在他的協調更好了， 還能跟我玩足球。

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

這讓我們夫妻倆的心都融化了，

and we've been blown away

我們非常高興，

by the unbelievable results we've witnessed

無法置信我們親眼見證 這種實驗性方法論

as a result of this experimental methodology.

帶來如此驚人的結果。

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

現在，我們很驕傲地自稱「敏捷父母」。

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

你可能和我一樣， 也有個孩子有著特殊需求，

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

或者，你可能在人生中 遭遇到不同類型的限制：

professionally,

專業上的，財務上的，

financially,

academically

學術上的，或甚至身體上的。

or even physically.

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

我想要提醒你，

在為更大的目標努力時，

dare to take small sprints.

要敢於進行小型衝刺計畫。

These sprints are usually far from excellent themselves,

這些衝刺計畫本身 通常不會有出色的結果，

but they add up to magnificent results.

但它們通通加起來時卻很驚人。

Thank you.

謝謝。