《不一樣的爸媽》 EP 2 - 視障兒子

Summary

The script narrates the family's journey in caring for Gabriel, a child with congenital glaucoma, emphasizing the emotional and practical challenges they face. It details the parents' efforts to support Gabriel's education and independence, his unique experiences learning through touch and sound, and the family's hope to foster resilience and positive memories. The narrative also touches on societal perceptions and the family's strategy to empower Gabriel with confidence and a sense of normalcy despite his visual impairment.

Takeaways

• 😔 The family faces significant challenges in caring for Gabriel, who is visually impaired, including his daily needs and emotional well-being.
• 👨‍👩‍👧‍👦 The family consists of four members: the narrator, his wife Joey, and their two children, Felicia and Gabriel, who have different needs and experiences.
• 👶 Gabriel was born with a visual impairment, which was initially shocking and difficult for the family to accept, leading to emotional turmoil.
• 🏥 Gabriel underwent numerous surgeries in an attempt to improve his vision, highlighting the family's commitment and hope for his condition.
• 📚 Gabriel's education is facilitated through electronic devices and braille materials, adapting to his visual limitations.
• 🎶 Gabriel has a strong sense of music, which was discovered through music therapy and has become a significant part of his life.
• 🚌 Gabriel has a passion for buses and transportation, which the family supports and encourages as a way to build his confidence.
• 🌈 The family's home is colorfully decorated to assist Gabriel in navigating and identifying spaces and objects, despite his visual impairment.
• 💪 The family emphasizes the importance of building Gabriel's confidence and preparing him for the possibility of further vision loss.
• 🤝 The script conveys the importance of understanding and adapting communication methods when interacting with visually impaired individuals.
• 👨‍👧 The narrator reflects on the lessons learned from Gabriel, highlighting the role of children in teaching parents about resilience and perspective.

Q & A

What is the main challenge in taking care of a disabled person according to the transcript?

The main challenge is to cater to the daily living and dietary needs of the disabled person while also taking care of their emotional well-being, ensuring they do not feel useless or incapable.

How does the family communicate with Gabriel, who has visual impairments?

The family has to adapt their communication methods to accommodate Gabriel's visual impairments, which may include spending more effort to ensure he understands, as he cannot see facial expressions or gestures.

What was the initial reaction of Gabriel's father upon learning about Gabriel's eye condition?

Gabriel's father initially felt shocked and heartbroken, describing the eyes as 'strange' or even like 'monsters' due to their blue,膜-covered appearance.

What was the mother's profession and how did it affect her reaction to Gabriel's condition?

The mother was an ophthalmic nurse, and her professional knowledge made her more aware of the severity of Gabriel's condition, leading to a very emotional and uncontrollable reaction.

How many surgeries did Gabriel undergo before he turned three and a half years old?

Gabriel underwent more than thirty surgeries, including both minor and major ones with general anesthesia, before he was three and a half years old.

How does Gabriel's family assist him with his schoolwork?

Gabriel uses electronic aids for writing and braille textbooks to learn and complete his schoolwork. His family helps him understand the assignments and correct any mistakes.

What method does the family use to help Gabriel understand abstract concepts like geometric shapes?

The family uses physical objects like building blocks to create shapes and allows Gabriel to touch and feel the shapes to understand them better.

How does Gabriel's family help him navigate the world with his limited vision?

Gabriel's family encourages him to touch and feel everything around him to understand textures and shapes. They also explain abstract concepts in more detail to help him form a mental map of his surroundings.

What is Gabriel's special talent and how was it discovered?

Gabriel has perfect pitch. It was discovered when he was introduced to music therapy around the age of two, where he showed sensitivity to musical notes and could identify tones accurately.

How does Gabriel's family deal with public scrutiny and insensitive comments from others?

The family tries to maintain a positive attitude and teach Gabriel to respond confidently to others' questions or comments about his vision. They focus on creating happy memories and not letting negative experiences affect their relationships.

What is Gabriel's favorite mode of transportation and why is he interested in it?

Gabriel's favorite mode of transportation is the bus because of his interest in various forms of transport. He is particularly fascinated by the sounds and mechanisms of buses and trains.

What was the experience like for Gabriel when he visited the bus depot?

Gabriel had a very positive experience at the bus depot. He was able to 'drive' a bus and was given a trainee conductor's badge and uniform, making him feel special and happy.

What is the family's outlook on Gabriel's future vision loss and what are they doing to prepare for it?

The family is making daily psychological preparations for the possibility of Gabriel losing his vision completely. They are focusing on building his confidence and creating happy memories, ensuring that he has a strong mental foundation to rely on in case of future vision loss.

Outlines

00:00

👨‍👩‍👧‍👦 Family and Challenges of Caring for Gabriel

The paragraph describes the daily challenges of caring for a disabled family member, Gabriel, who was born with a rare eye condition. It details the family's initial reactions and struggles, especially the mother's emotional turmoil, given her background as an ophthalmic nurse. The father reflects on the family's journey, including Gabriel's numerous surgeries and the emotional impact. The family's perseverance and Gabriel's resilience are highlighted, with a focus on the adjustments and support systems put in place to aid his learning and development.

05:03

📚 Overcoming Educational Hurdles

This paragraph delves into the educational challenges Gabriel faces due to his blindness. It explains how he uses electronic devices and tactile methods to learn, particularly highlighting the difficulties with Chinese characters compared to English. The family uses creative methods to explain abstract concepts, like building models for Gabriel to touch and understand. The importance of tactile experiences is emphasized, and the family adapts their home environment with vibrant colors to aid Gabriel's navigation and spatial understanding.

10:05

🎵 Gabriel's Absolute Pitch and Coping with Social Challenges

The paragraph focuses on Gabriel's discovery and development of his absolute pitch through music therapy, which helped him with speech due to his inability to see lips move. His interest in and sensitivity to musical notes is highlighted, along with examples of his abilities. It also discusses the social challenges Gabriel faces, including insensitive comments from strangers and how his family teaches him to respond confidently. The family's strategy to build Gabriel's resilience and self-esteem in the face of social stigma is emphasized.

15:06

🚌 A Special Day at the Bus Depot

Gabriel's love for buses and other forms of transportation is the central theme. The family surprises him with a visit to a bus depot, where he experiences a day as a bus driver. The paragraph describes Gabriel's excitement and the detailed planning to make this experience memorable for him. His parents explain the significance of creating lasting memories and how they prepare for the possibility of Gabriel's vision worsening in the future. They emphasize the importance of building Gabriel's confidence and resilience through positive experiences.

20:07

❤️ Parental Reflections and Hopes for Gabriel

This concluding paragraph contains the parents' reflections on their journey with Gabriel. They express gratitude for the lessons learned from their children and emphasize the importance of maintaining a positive outlook despite challenges. The parents highlight the deep bond within the family and the importance of focusing on happy memories. They stress the significance of cherishing every moment and teaching Gabriel to be confident and resilient, preparing him for a future where he might lose his sight completely.

Keywords

💡Disability

Disability refers to a physical or mental condition that limits a person's movements, senses, or activities. In the video, the theme of caring for a disabled individual is central, with a focus on the challenges and emotional aspects of supporting someone with special needs, such as Gabriel who has a visual impairment.

💡Visual Impairment

Visual impairment encompasses a wide range of vision difficulties, from partial sight to complete blindness. Gabriel's condition is a significant aspect of the video, highlighting the unique struggles and adaptations required for daily life, such as using braille and electronic aids for reading and writing.

💡Communication Barriers

Communication barriers refer to the difficulties that can arise when trying to convey or receive information effectively. The script discusses the challenges of communicating with individuals who have visual impairments, as they may not be able to see facial expressions or body language, requiring additional effort and empathy in interactions.

💡Emotional Support

Emotional support involves providing comfort, understanding, and encouragement to others. The video emphasizes the importance of nurturing the emotional well-being of disabled individuals, ensuring they do not feel useless or incapable, which is crucial for maintaining their self-esteem and quality of life.

💡Coping Mechanisms

Coping mechanisms are strategies used to manage stress or adversity. The family in the video employs various coping mechanisms, such as seeking medical treatment, engaging in music therapy, and creating a colorful home environment to assist Gabriel in navigating his world despite his visual impairment.

💡Music Therapy

Music therapy is an evidence-based therapeutic use of music to address physical, emotional, cognitive, and social needs of individuals. Gabriel's experience with music therapy is highlighted as a way to help him learn to speak and develop his sense of hearing, showcasing the power of alternative communication methods.

💡Braille

Braille is a tactile writing system used by people who are visually impaired. It is a key tool that Gabriel uses for reading and education, illustrating the video's theme of adaptation and the use of technology to overcome the limitations imposed by visual impairment.

💡Stigma

Stigma refers to a mark of disgrace associated with a particular circumstance, quality, or person. The video discusses the stigma associated with disabilities, particularly the hurtful comments and attitudes Gabriel and his family face, emphasizing the need for societal understanding and acceptance.

💡Parental Role

Parental role encompasses the responsibilities and expectations placed on parents in raising and caring for their children. The video explores the complex emotions and roles parents take on when their child has a disability, including being a caregiver, advocate, and teacher.

💡Inclusive Education

Inclusive education is an approach that aims to cater to the needs of all students, including those with disabilities. Gabriel's use of electronic machines for writing and his participation in regular schooling reflect the video's focus on the importance of inclusive practices in education.

💡Resilience

Resilience is the capacity to recover quickly from difficulties or to endure hardships. Gabriel's story exemplifies resilience, as he and his family face numerous challenges but continue to persevere and find joy and fulfillment in life, inspiring viewers to appreciate their own abilities and opportunities.

Highlights

Caring for disabled individuals involves challenges in daily living and mental well-being, ensuring they do not feel useless.

Communication difficulties arise with visually impaired individuals due to the reliance on facial expressions and body language.

The family consists of four members, with the narrator, his wife Joey, and two children, Felicia and Gabriel.

Gabriel was born with a condition that affected his vision, causing his eyes to appear blue and opaque.

The initial diagnosis of Gabriel's condition was met with shock and a struggle to understand and accept the reality.

Gabriel underwent numerous surgeries in an attempt to improve his vision, highlighting the family's commitment and hope.

The use of electronic aids and braille textbooks is essential for Gabriel's education due to his blindness.

Gabriel's learning process involves tactile experiences and the use of remaining vision to understand abstract concepts.

The family's home is designed with vibrant colors to assist Gabriel in navigating and identifying spaces and objects.

Gabriel's absolute pitch allows him to discern musical tones, which was discovered through music therapy.

The family faces social challenges and insensitive comments from others regarding Gabriel's condition.

Gabriel's older sister, Felicia, shares her experiences of having a brother with a disability and their sibling dynamics.

The family's visit to a bus factory fulfills Gabriel's interest in transportation and creates lasting memories.

Gabriel's partial vision allows him to have a unique perspective on the world and a symbol of his individuality.

The family emphasizes the importance of confidence and maintaining a positive outlook despite the challenges.

The parents express gratitude for Gabriel's presence in their lives and the lessons they've learned from him.

The transcript highlights the strength of the family's bond and their approach to overcoming adversity together.

Transcripts

如果要照顧殘疾人士的話

我想起居飲食應該是最大挑戰

你要顧及他的起居飲食之餘

又要顧及他的心靈

不可以令他覺得自己好像很沒用

甚麼也做不到

在健全人士為主的社會

大家可能習慣了一般的溝通方法

但如果有視障問題

看不到對方的表情或動作

我覺得在溝通上可能也會有困難

需要花更多心力照顧他們

我們家裡有四個成員

我、太太Joey和兩個小朋友

長女叫Felicia，幼子叫Gabriel

我們在2011年生Felicia

Gabriel則是2014年出生

Felicia是12歲，Gabriel是9歲半

Gabriel出生時

已經是這種狀況嗎　　對

我記得當時很清醒

因為是一個很冷靜的人　　醒過來

姑娘很平淡地說有一塊膜遮住

其他都沒問題

一開始說一切都沒問題

只是眼睛有一塊膜而已

「等等」

我很淡定地問單眼還是雙眼

反問姑娘是單眼還是雙眼有問題

知道自己當刻很冷靜

因為真的需要面對

當他們說雙眼時，我已經心死

叫他們立刻讓我看看

看到他沒有眼白，整隻眼是藍色

好像發亮的藍色

令人覺得為甚麼有小孩如此奇怪

或者像…怪物？就算冒犯也要說

當時真的有這種感覺

心想為甚麼會這樣

我當時也不太清楚發生甚麼事

還以為是能夠醫治的病症

但媽媽在旁邊看到時開始…

情緒很激動　　對，無法控制情緒

可能因為她知道的情況比我多

她本來是眼科護士

知道這種情況是甚麼一回事

沒想過我平常服務的客戶是…

我覺得角色好像有點混淆了

究竟我是甚麼角色

角色對調，自己變成病人

到底我是病人還是家長、媽媽

自己開始想不透

九年半了，到現在仍然歷歷在目

你就知道整件事沒被沖淡

依然記得當時的景象，因為太深刻

出生後視力還不至於差得完全失明

醫生對我說「試試吧，媽媽」

「嘗試做手術」之類

總不能不賭一把，沒理由不去試

結果跟他一起共生死，共赴患難

帶著兒子放手一搏

做了三十多次手術

他三歲半前

做過全身麻醉的大小手術

這些經歷是沒有人會明白

現在我翻看照片也會流淚

事實上，這位小朋友很堅強

我是被他的堅強感動

我本來不是很堅強的人

我經常覺得為母則剛

做媽媽就要堅強

因為不堅強的話，他怎樣向你學習

平常Gabriel上學

功課和書本是怎樣

我們先介紹吧

因為他失明，不像我們看到文字

所以要用電子機輔助他

主要靠這部電子機進行書寫

這些是他摸的課本

他會摸英文字

英文字跟中文字不同

中文字困難許多

英文字的音和字是相同

所以簡單很多

但看起來也只是點字的圖像　　是

對他們來說已經是不同的意思

平常Gabriel的功課會寫手冊上吧

你會否不知道他有多少功課

當然會，所以有很多出錯的情況

例如沒做足功課，寫完又未必正確

很多時候要從錯誤中學習

Gabriel會否故意寫漏

少做一份功課

一定會，因為很多事情要克服

但是難免會忘記，沒辦法面對

所以寫手冊時有所遺漏

可能對我的視力來說是正常的

例如我們看到比較立體的事物

球體、三角形、三角柱之類

或者太空、星球

這些都是平常用肉眼看到就能理解

你會怎樣解釋給Gabriel知道呢

以三角形為例，最近要介紹金字塔

可能是常識科的內容

我們會用一些磚組合成三角形柱體

或者已經有三角形柱體的積木

然後告訴Gabriel

金字塔是這個的無限大版本

他會有大致的概念，接著要摸

每個角和尖位都要摸得很清楚

我們用這種教法

例如體形很大的大象又怎麼辦

我說「媽媽很厲害，帶你去泰國」

「讓你摸真正的象」

真的摸過？　　摸過大象

我可以做的事就是這樣

真的要讓他多用手感受周遭的事物

全部東西都讓他觸摸

例如這張梳化的質地是粗糙的

用更多解釋去說明抽象的事物

我覺得他會比較知道

因為他還有一點視力

如果完全失明，真的很難處理

但看得到的話，他靠近看也能知道

花瓶的柱體是怎樣

一條柱子也是類似的形狀

那他就有概念

Winston，看到你的房子色彩繽紛

有粉紅色和綠色，有甚麼涵意嗎

房子要色彩繽紛是為了配合弟弟

雖然他有視障，但看得到光和顏色

所以他是靠顏色來辨認位置

辨認自己的物品放在哪裡

有空間感去知道傢俬的編排

令他更容易辨認位置或物品　　是

腦海裡有一個家的地圖

我覺得不錯，整個感覺很溫馨

這間房子很溫暖，因為色彩繽紛

對，幫他辨認家裡的地方

剛才提過Gabriel有絕對音感

最初怎樣發現他有這種天賦

因為他小時候學習說話比較困難

無法看到嘴唇

小朋友學習說話

通常是看大人的嘴唇形狀和聽聲音

但他看不到嘴唇，所以我們很惆悵

不知道怎樣讓他學習說話

有人叫我們嘗試帶他去音樂治療

因為音樂治療可以用音樂教他拼音

我想大約兩歲吧

用廣東話的聲調

像廣東歌般唱出歌曲

他慢慢能掌握一些字的發音

對音樂中的音符很靈敏

因為老師會彈結他給他聽

還會教他打鐘，有各個音調的鐘

他打得多就知道每個鐘是甚麼音調

現在聽歌

只要聽到歌曲就知道是甚麼音調

完全聽得出是大調或小調

我可以單手彈奏

你彈高音，C音調就可以

彈C音調吧，弟弟

厲害…

例如家裡有很深的連繫　　希望吧

真的感受到很強烈　　我也感受到

但當出門時，可能有其他人的目光

或言語上的攻擊　　當然…

小朋友一定會比較敏感

怎樣教導他面對這個世界的人

其實他小時候也聽不懂別人的意思

或者未必看到別人的眼光

他如此大膽

其中一個原因就是看不清楚

看不到你們的眼耳口鼻和樣貌

表情　　對，看不到表情

即使在笑他，他也不知道

有其他表情…　　他看不到

因為看不到，所以甚麼都敢做

對大人而言

我們當然很辛苦地克服這件事

坐巴士和地鐵，別人怎樣看待他

甚至有些乘客會說

「你的兒子是瞎子嗎？真可憐」

的確可憐

但不用你再提醒我很可憐

確實是失明，我不知道能怎樣回答

這些時候需要自己調節心態

如果聽到這些說話就很生氣或想哭

不能這樣

我們不能這樣，聽完只好自行消化

然後就沒事

到他慢慢長大

懂得走路、說話，要上學的時候

我們便教他

懂得用有信心的方法回答別人

「對，我先天性青光眼」

「出生時就是這樣」

「不是完全失明，還能看到一些」

我知道Gabriel很喜歡巴士

為甚麼很喜歡巴士

因為巴士是我優先考慮的交通工具

他對交通工具非常有興趣

不只是巴士，是吧

我記得地鐵是他第一個喜歡的東西

廣播是怎樣

連廣播內容也記得

你想聽甚麼站的廣播　　杏花邨

下一站杏花邨

左邊的車門將會打開

下一站杏花邨

左邊的車門將會打開

你記得每個站打開哪邊的車門嗎

對

現在東鐵線加了幕門　　很厲害

閘門　　是，對不起…

但大學站…

你最初知道弟弟的眼睛有問題時

感受是如何

我當時年紀很小，好像三歲

有弟弟已經很開心，所以沒有理會

有甚麼跟弟弟很深刻的回憶嗎

通常是吵架才會印象深刻

吵架？為甚麼吵架

因為他看不到

所以覺得自己是正確，很固執

有時候太固執，無法教他

所以就吵架　　是

通常吵架時會怎麼辦　　告訴媽媽

「媽媽，弟弟又錯了」　　對

然後媽媽會怎樣

將整件事告訴媽媽

媽媽也會責罵弟弟，叫他別太固執

任何事也要先聽別人的意見

所以在你眼中的弟弟

除了很固執，他是甚麼性格的人

出門時反而有社交恐懼症　　是嗎

他不喜歡聽別人的話

例如叫他走東邊就走西邊

故意嗎　　對

跟Joey和Winston聊天後

他們說還是想將願望交給孩子

你有否想過帶Gabriel去哪裡

剛才跟他聊天後

我覺得既然他很喜歡巴士

不如在他仍然有視力

可以感受這個世界的時候

帶他去巴士廠　　好

你跟他聊過天，他好像很喜歡巴士

他非常喜歡巴士，是巴士迷

那我們去看看　　好

你好…

這是甚麼？弟弟　　奧林比安

今天特地帶你來巴士廠

有甚麼感受　　開心…

還有呢　　很想快點參觀嗎

想快點去坐車　　快點去坐車嗎

我們有禮物送給他們　　是

送給他　　你今天有職責，知道嗎

你數三聲　　3、2、1

這是你今天的車長訓練生工作證

還有工作服

真的來這裡上班　　對

很英俊　　雙手插褲袋…

非常英俊　　先擺姿勢

有型　　是，先擺模特兒的姿勢

你很有型　　這樣嗎

Gabriel穿得這麼有型

你知道我們待會帶你去哪裡嗎

坐巴士　　坐巴士？

你有預知能力

我看到那邊有一輛奧林比安

先過來　　對，你先回來

你知道我們坐巴士要做甚麼嗎

遊覽巴士廠一圈

你全都知道了，你是先知嗎

我做司機吧

你說得對，你最熟悉這裡

那我們坐你的巴士去遊覽，好嗎

好　　準備好了吧

我們走吧，上車　　快點

有扣錢嗎　　厲害

我也拍卡

是玻璃樓梯　　慢慢走

坐前面　　好

我也喜歡坐前面

我也很少坐這種巴士

開車，要開車了嗎　　開車了嗎

洗車機是自動運作的

車長只要將巴士慢慢靠近兩側的刷

就可以妥善清洗巴士的車身

Gabriel，現在你的眼睛看到甚麼

即是甚麼情況

有7%至10%的視力

右眼看得很清楚

看到近的事物，遠距離則看不到

例如看不到車牌

左眼只看得到光和影

那幾歲或遇到甚麼事

令你知道自己跟其他人有些不同

因為四、五歲開始有很多人問我

「你的眼睛怎麼了」

我希望不要這樣問

我覺得大家好像想歧視我

「你是瞎子嗎」

這樣問不就是在歧視我嗎

自己可以好好回答他

「我的眼睛在出生時就是藍色」

「我是天生性青光眼」

你當時聽到別人這樣說

有否傷心或很生氣

很傷心，好像想歧視我

但這亦是象徵我的標誌

這種就是有型，很欣賞你

不要跟那些人一般見識

你很特別，知道嗎

今天本來預備了一個願望給兩位

但你們將這個願望讓給Gabriel

為甚麼會這樣做

我們的願望很簡單而已

我覺得這件事對Gabriel來說

更加有滿足感

可以在他的腦海裡留下深刻的印象

當他繼續成長，長大後

或許某天他會看不到東西

完全失明

但他會好好記得今天的經歷

所以兒子的視力會變差嗎

會一直惡化還是以後要再看醫生？

現在是甚麼情況

最差的情況是完全失明

可能是十多歲或二十多歲時

我們也知道他長大後

當眼球拉長時，眼睛可能會惡化

甚至完全失明

每天都在做心理準備

慢慢加強自己的…

讓自己做好準備

我知道他某天可能真的會失明

我們每天跟他一起做的事

同時也是在建立他的信心

因為我們也會慢慢告訴他

這個病症可能某天會導致完全失明

每天都在教導他

如果以後真的失明

我們也是同樣的生活方式

沒有任何改變

我經常告訴他

他跟其他小朋友一樣

當他真的失明時也要有充足的信心

以前做得到的事，在腦海裡有印象

小時候怎樣做和學習這件事

因為有記憶，所以能繼續做

所以現在很重要

由現在到他完全失明的這段時間

真的要好好珍惜每分每秒去教他

教得越多越好

在他失明前

儘量讓他記住美好的回憶

當他某天真的失明時

不會忘記這個畫面

這點很重要，雖然可能會失明

但我希望他會記得開心的事

陳車長…　　是

你今天在巴士廠度過一個下午

感覺如何呢

不錯，全程開車，沒發生任何事

沒發生事情？有意外嗎　　沒有

開心嗎　　開心

10分滿分的話，有多少分

9分

今晚做夢也會想著嗎　　會

父母還有甚麼想告訴Gabriel

我很感謝他的來臨

如果沒有他來到這個家庭

我們也不會學到這麼多東西

不會改變我們某些思想

其實小朋友也是父母的老師

每天都不斷從小朋友的成長中

學習怎樣成為父母和怎樣做人

我想告訴他，對每件事抱有信心

無論你是甚麼光景

不要覺得自己甚麼也做不到

看看自己還擁有甚麼

所以嘗試去感受他們經歷的事

我們會更明白他們

然後更加懂得如何溝通和相處

Joey說出一件很正確的事

因為他看不到你的表情

反而不太在意別人的情緒

可能相對是好事

有時候可能真的想得太多

他們看不到我們覺得很重要的事

但反而會有更多心思或時間

集中在自己想做的事上

我們每天都在面對很多好與壞

發生不好的事時

很容易集中在傷心或傷害上

如果每天都留意令自己開心的事

製造美好的回憶

那可以令我們跟身邊的人

只留下美好的回憶

感覺到他們經歷了很多事

但同時彼此的感情很深厚

可能這些不幸的事對很多人而言

能夠避開的話，當然是避之則吉

但亦因為他們經歷過這些事

所以令關係可以如此密切