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

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00:00
Transcriber: Joseph Geni Reviewer: Camille Martínez
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譯者: Lilian Chiu 審譯者: Helen Chang
00:12
It is the third of March, 2016,
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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。
00:16
and I'm anxiously waiting for my wife to deliver our firstborn son.
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00:21
Seconds turn into minutes,
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幾秒鐘變成了幾分鐘,
00:23
then hours,
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接著幾小時,
00:25
without a sign of a child coming through.
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都沒有孩子要出來的徵兆。
00:28
Then a midwife emerges with a silent baby in her hands,
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接著,一位產婆出現, 手中抱著一個安靜的寶寶,
00:32
and she runs past me as though I'm not even there.
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她從我身邊跑過去, 好像我不在那裡一樣。
00:36
Why is he not crying?
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為什麼孩子沒有在哭?
00:39
I'm gripped with chills in my spine as I run after her in terror.
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我恐懼地跟在她後面跑著, 緊握雙拳,背脊發涼。
00:45
She puts the baby on a bench
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她把寶寶放在長椅上,
00:47
and begins a resuscitation procedure.
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開始執行搶救流程。
00:51
Thirty minutes later,
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三十分鐘後,
她告訴我:
00:53
she tells me,
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00:55
"Don't worry,
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「別擔心,
00:56
he will be fine,
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他會沒事的,
00:58
and thank you for staying calm."
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謝謝你保持冷靜。」
01:01
He was placed in the ICU,
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他被送到加護病房,
01:04
and though I cannot touch him,
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雖然我無法觸碰他,
01:07
I repeatedly say,
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但我不斷重覆說:
01:09
"Shine on, my son.
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「繼續發光,我的兒子。
01:11
Don't give up.
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別放棄。
01:13
I am here with you,
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我在這裡陪著你,
01:15
and you don't have to be scared.
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你不用害怕。
01:17
Please pull through and let us go home.
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拜託,要挺過去,我們一起回家。
01:20
You do not belong here."
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你不屬於這裡。」
01:23
Seven months later,
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七個月後,
01:25
he would be diagnosed with cerebral palsy,
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他被診斷出腦性麻痺,
01:29
a nonprogressive brain injury
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一種非進行性的大腦傷害,
01:31
which primarily affects body movement and muscle coordination.
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主要會影響到身體活動和肌肉協調。
01:36
About two to three children out of 1,000 in the United States
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在美國,大約有千分之二到三的孩子
01:42
have cerebral palsy.
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患有腦性麻痺。
01:44
I do not know the statistics for my country and continent,
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我不知道在我的國家、 我的大陸,統計數據是什麼,
01:48
because there's not much documentation.
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因為沒有那麼多文件記錄。
01:51
Maybe this could be the journey that changes everything.
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也許,這會是改變一切的旅程。
01:56
We named him Lubuto,
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我們將他取名為魯布托,
01:58
a beautiful Zambian name from my Lunda tribe
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那是美麗的尚比亞名字, 出自我所屬的盧巴部落,
02:01
of the Bemba-speaking people,
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這個部落說的是本巴語,
02:03
meaning "light."
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魯布托的意思是「光」。
當魯布托七個月大時,
02:07
By the time he was seven months,
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02:10
Lubuto's physical impairment
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他的身體損傷
02:12
was predominant in the left part of his body.
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主要影響了他的左半身。
02:15
Both his left leg and arm were less responsive.
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他的左腳和左手臂反應都比較差。
02:20
He couldn't grasp items;
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他無法抓取物品;
02:22
worse off, couldn't babble his first words
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更糟的是,他無法牙牙學語 說出他的第一個字,
02:26
because the cerebral palsy shackle affects the muscle in his lips.
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因為腦性麻痺也影響了 他嘴脣的肌肉。
02:31
Rolling over
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翻身
02:33
and other milestones that come naturally in typical babies,
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以及其他一般寶寶 很自然會達到的里程碑,
02:36
couldn't be seen in our son.
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我們的兒子都無法做到。
02:39
Lubuto was visibly unaware of his own body.
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魯布托很明顯 無法意識到自己的身體。
02:44
And some specialists started preparing us for the worst
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有些專家開始幫我們做最壞的準備,
02:47
by telling us that we were going to be very lucky
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告訴我們,如果他不用支撐能坐直,
02:51
if he ever sat upright and unsupported.
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我們就算非常幸運了。
02:55
Before us was a gigantic, seemingly immovable mountain.
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在我們面前的,
是一座似乎無法搬移的巨山。
03:02
What do we do?
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我們能做什麼?
03:04
For the past 15 years,
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在過去十五年間,
03:06
I have worked as a computer programmer,
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我都在擔任電腦程式設計師,
03:09
and now I'm a certified project management professional.
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現在,我是有證照的 專業專案管理人員。
03:14
After the denial, crying and partial depression was over,
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在否認、哭泣, 和部分憂鬱結束之後,
03:19
I began to wonder
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我開始思考我們是否
03:20
if we could put my programming and project management skills together
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能把我的程式設計 和專案管理技能整合起來,
03:25
to try and help the situation.
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試圖協助改善這個狀況。
03:27
Acceptance kicked in,
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我開始能接受,
03:30
and I searched from deep within for strength and any available knowledge
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我往內心深處尋找力量
和任何可得的知識,
03:36
to help with the challenge before us.
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來協助處理我們眼前的挑戰。
03:40
I ordered two books online
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我在線上訂購了兩本書,
花了無數不眠的夜晚,
03:44
and spent countless sleepless nights
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03:46
researching neuroplasticity in a child's brain.
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研究孩童大腦的神經可塑性。
03:52
My extensive research indicated
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經過廣泛的研究,我發現,
03:55
that people who have strokes are able to recover
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中風的人可以透過
03:58
through assiduous rehabilitation programs
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照顧周到的康復計畫來復元,
04:02
that activates new parts in the better part of their brains.
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他們大腦較好的那一部分當中 有些新部分可以被活化,
04:09
This left me with one big question:
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這讓我產生了一個大問題:
04:12
If this works for grown people,
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如果這個方法對成人有用,
04:16
why should it not work for a baby?
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對嬰兒為什麼不會用有?
04:21
I also learned that human beings pick up fundamental patterns
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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,
04:26
mainly between ages zero to five,
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04:28
and after that,
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在那之後,
04:30
consolidation of habits happens.
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習慣就會開始固化形成。
04:34
It was scary
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這很讓人害怕,
04:36
to realize that we may just have five years
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因為發現我們可能只有五年時間
04:40
to figure out the immobility of Lubuto.
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來想辦法改善魯布托的活動障礙。
04:44
On such a tight timeline,
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在這麼緊迫的時間壓力下,
04:47
we needed to build a support system around him,
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我們得在他周圍 打造出一個支援系統,
04:50
leveraging the limited resources available to us.
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好好發揮我們能取得的有限資源。
04:55
This was a clear project before us
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在我們面前的,很明顯是一個專案,
04:57
which needed to be carefully executed,
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我們得小心地執行它,
05:00
and we needed a capable, self-driven team,
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還需要一個有能力、自主的、
05:03
an agile team.
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敏捷的團隊。
05:06
"Agile" is a methodology that we use
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「敏捷」是一種方法論,我們用它
05:09
to execute projects with changing requirements
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來執行需求不斷改變的專案,
05:12
to achieve progressive results
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以一步一步達成漸進式的結果。
05:15
in increments.
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05:18
We needed to deliver quick results,
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我們需要快速產出結果,
05:21
and in pieces,
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且是零散的,
05:23
considering our work was largely dependent on Lubuto's responsiveness
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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。
05:29
and capability.
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05:31
The first team member I acquired was my beautiful wife Abigail,
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我找來的第一位團隊成員 是我美麗的太太艾碧嘉,
05:35
who is luckily a project manager, too.
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很幸運的是,她也是專案經理。
05:39
You know how rough that can be, right?
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你們知道那有多難搞吧?
05:42
Two project managers under one roof.
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兩個專案經理同在一個屋簷下。
05:46
We searched around Zambia for a neonatal physiotherapist,
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我們在尚比亞尋找 一名新生兒物理治療師、
05:50
an occupational therapist
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一名職能治療師,
05:52
and a speech therapist.
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以及一位語言治療師。
05:54
It felt like mission impossible.
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這感覺好像是個不可能的任務。
05:58
We set road maps
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我們設定的藍圖是一到三個月。
06:00
of one to three months,
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06:02
just enough planning and just in time.
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剛好能在時間內做足夠的規劃。
06:06
We then identified features like,
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接著,我們找出想要達成的特性:
06:09
"We want him to stand and walk independently,"
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「我們希望他能獨立站起來行走」,
06:13
under different themes like gross motor, fine motor,
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歸類在不同的主題下,如粗大動作、
精細動作、適應技能、
06:18
adaptive skills,
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06:20
communication, asymmetric movement
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溝通、對稱動作,
以及平衡。
06:23
and balance.
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06:25
Next, we created sprints
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接著,
我們設計出刺激魯布托
06:29
to work on the stimulation of different parts of Lubuto's body.
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各個身體部位的衝刺計畫。
06:35
When you're working on an agile project,
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在做敏捷專案時,
06:37
you do a series of lead-to tasks,
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要做一連串的過程任務,
06:41
collectively called "sprints,"
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合起來就叫衝刺計畫,
06:43
which the team reviews after execution.
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團隊會在這個衝刺計畫 執行之後進行檢討。
06:47
We, for example, set a goal to stimulate his left arm.
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比如,我們設定的目標 是要刺激他的左手臂。
06:52
Say occupational therapists use different textures
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職能治療師用不同的布料 去摩擦他的手臂。
06:55
to rub on his arm.
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06:57
Physiotherapists make deliberate movements in his arm
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物理治療師刻意 用他的手來做某些動作,
07:00
to build the muscles.
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以鍛鍊肌肉。
07:03
And self-proclaimed general therapists, who was usually myself,
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而自稱的一般治療師,通常就是我,
07:08
engage in logical stimulations
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會採用邏輯刺激,
07:10
like slowly moving his favorite toy from his right hand
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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,
07:15
across and by in front of him to his left side
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07:19
to prompt movement in his left arm.
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以促進他左手臂的活動。
07:23
And at the end of each week,
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每週結束時,
07:25
we would review our results as a team:
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我們會做團隊討論, 檢討我們的結果:
07:28
How did OT go?
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職能治療做得如何?
07:30
How did physio go?
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物理治療做得如何?
07:32
How did stimulation go?
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刺激做得如何?
07:34
Did we meet our goal?
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我們有沒有達到目標?
07:38
Because frequent communication is very important on an agile project,
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因為在敏捷開發專案中, 經常溝通非常重要,
07:43
we created a WhatsApp group for quicker updates.
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我們建立了一個 WhatsApp 群組, 方便我們快速提供新訊息。
07:47
Failing early and picking up
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在初期就失敗並再接再勵
07:50
is a special characteristic of agility,
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是敏捷專案開發的一個特色,
07:55
and we leveraged that because our work is largely dependent on his response.
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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。
08:01
Luckily, Lubuto is a fighter,
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幸運的是,魯布托是個鬥士,
08:06
and his determination is out of this world.
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他的決心可說是超凡。
08:09
After we achieved the goal of activating his arm,
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在達成「活化他的手臂」 這個目標之後,
08:13
we then moved to his leg.
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我們接著處理他的腿。
08:16
The activities were totally different,
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要使用的活動完全不同,
08:20
but followed the similar iterative process.
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但遞迴重覆過程很類似。
08:24
I would come to learn in brain plasticity
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我從大腦神經可塑性漸漸學到
08:26
that Lubuto was better off learning certain skills when he was ready,
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魯布托最好是在他準備好時 再去學習某些技能,
08:32
even if it meant delaying him,
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即使那樣會延誤也沒關係, 因為他必須要學正確。
08:33
because he had to learn it right.
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08:36
While working and managing Lubuto as an agile project,
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當我們把魯布托當作 敏捷專案開發來進行和管理時,
08:42
a new team member popped up.
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一位新團隊成員冒出來了。
08:44
Oh! It's Lubuto's sister, Yawila.
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喔!是魯布托的妹妹,雅薇拉。
08:49
We had no idea how we were going to manage the process
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我們不知道要如何在 不打擾到他的情況下進行流程,
08:53
without disturbing him
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08:54
while not making the sister feel neglected
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同時也不要因為給他很多注意力
08:57
because we were giving the brother a lot of attention.
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而讓他的妹妹覺得被忽視。
09:00
Our daily iterations continued,
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我們的日常重覆遞迴持續進行,
09:03
and now Lubuto was able to walk on his stiff legs.
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現在魯布托能夠 用他僵硬的腳行走了。
09:07
With me cheerleading from the front as I walked backwards,
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我在他前面倒著走路 引導他,為他加油,
09:11
because I needed to keep eye contact with him,
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因為我需要保持和他眼神交會,
09:15
I sang his favorite songs,
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我會唱他最喜歡的歌,
09:17
as we oscillated between our bedroom and the kitchen.
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同時在臥室和廚房之間 搖擺地來回走。
09:23
We then traveled to South Africa
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接著,我們前往南非,
09:25
and introduced a neuromovement therapist
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找了一位神經運動治療師加入團隊,
09:28
to the team,
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09:30
coupled with hyperbaric oxygen therapy.
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結合高壓氧治療。
09:34
These sprints were much shorter and focused on his brain,
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這些衝刺計畫更短許多,
且把焦點放在他的大腦,
09:39
teaching him about his own body
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透過小小的身體動作
教導他認識他自己的身體。
09:42
through small body movements.
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09:45
Terry did a miraculous job.
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泰瑞做得非常出色。
09:48
Lubuto started opening his knees in unison with his hips.
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魯布托開始配合他的臀部 打開他的膝蓋。
09:53
And in our second week,
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在第二週時,
09:55
he was able to run with better balance.
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他能夠更平衡地跑步了。
09:59
He started making intentional sounds to communicate with us
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他開始刻意發出 一些聲音來和我們溝通,
10:03
as a result of the new neuropaths firing.
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這是新的神經通路連結之後的結果。
10:09
We returned to Zambia with amazing results.
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我們帶著驚人的結果回到尚比亞。
10:13
And guess who effectively picked up the therapy?
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猜猜誰接手了治療?
10:16
The new team member.
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我們的新團隊成員。
10:18
Lubuto started mimicking the sister,
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魯布托開始模仿他的妹妹,
10:21
and soon he was learning more things good and bad from the sister
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很快的,他向他的妹妹 學到的好事與壞事
10:25
than he was learning from his team of therapists.
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已經比向治療師團隊學到的還多。
10:29
To make sure that he stays on track,
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為了確保他不偏離正軌,
10:32
we built a unique curriculum that incorporates all the therapies
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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。
10:37
with teacher Goodson.
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10:39
We've been blessed to have the knowledge before us
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我們很有福氣,能取得這麼多知識,
10:45
and be able to practically apply it.
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且能實際運用它們。
10:49
Not all families with special needs children
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很多家庭也有這種特殊需求的孩子, 卻沒我們那麼幸運。
10:51
are as fortunate as we are.
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10:54
We still have backlog stories,
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我們還有待改善事項未完成,
10:56
which is a fancy agile term for pushing failure to a later date,
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待改進事項的目的是要延後失敗,
11:02
in Lubuto's case, drooling and potty training.
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這在魯布托的例子中 包括流口水和便便訓練。
11:07
But in iterative, little daily activities,
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但,在不斷重覆的日常小活動中,
11:12
we managed to improve the entire left part of Lubuto's body --
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我們得以改善了 魯布托的整個左半身——
11:19
from the arm,
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從手臂,
11:21
to one finger to the other,
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到每一隻手指,
11:24
from the leg to the toes.
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從腿到腳趾。
11:28
Lubuto began to roll over.
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魯布托開始會打滾。
11:31
He began to independently sit.
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他開始靠自己坐好。
11:34
He was able to crawl,
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他也會爬行,
11:36
stand,
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會站立,會行走,會跑步,
11:37
walk,
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11:39
run,
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11:40
and now he plays soccer with me in a more coordinated manner.
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現在他的協調更好了, 還能跟我玩足球。
11:45
This has left my wife's heart and mine melting,
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這讓我們夫妻倆的心都融化了,
11:50
and we've been blown away
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我們非常高興,
11:52
by the unbelievable results we've witnessed
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無法置信我們親眼見證 這種實驗性方法論
11:55
as a result of this experimental methodology.
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帶來如此驚人的結果。
11:58
And now, we proudly call ourselves "agile parents."
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現在,我們很驕傲地自稱「敏捷父母」。
12:04
You may be a parent with a special needs child like me,
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你可能和我一樣, 也有個孩子有著特殊需求,
12:09
or you could be facing different types of limitation in your life:
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或者,你可能在人生中 遭遇到不同類型的限制:
12:13
professionally,
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專業上的,財務上的,
12:15
financially,
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12:16
academically
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學術上的,或甚至身體上的。
12:17
or even physically.
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12:20
I want to remind you that, in striving for bigger goals,
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我想要提醒你,
在為更大的目標努力時,
12:25
dare to take small sprints.
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要敢於進行小型衝刺計畫。
12:29
These sprints are usually far from excellent themselves,
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這些衝刺計畫本身 通常不會有出色的結果,
12:33
but they add up to magnificent results.
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但它們通通加起來時卻很驚人。
12:38
Thank you.
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謝謝。
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