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[人世间] 《活着》第671期:乐乐吾儿

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发表于 2017-5-19 02:12 PM | 显示全部楼层 |阅读模式


腾讯网  摄影/李欣赏   编辑/邹怡  2017-05-05
致十八岁的俊乐

乐乐,你好吗?这几年来你在学习上进步了多少?有没有交上几个能与你聊天的朋友呢?我不知道你看不看得懂这一封信,因为我在写这封信时,你虽然已经八岁了,但还是不太能与他人沟通。除了几个常用的句子以外,妈妈和我很多时候都必须凭经验,猜测你心里到底在想些什么,有时甚至还必须从你随性哼唱的歌词中,猜想你的心情,以及你到底要表达些什么。

现在的你,是不是更能控制好自己的情绪了呢?我明白很多时候你是不由自主的发脾气,可能是因为环境太吵闹、天气太闷热、或有太多不同的外在因素,刺激你的感官,让你不胜负荷,所以你才会如此焦躁不安。可是,我们要生活在这个社会,就必须学习适应它,学习如何面对和应付这些不同的环境因素。尤其因为现实社会中,还是有很多人不明白什么是自闭症,或甚至完全没有接触过自闭患者,所以他们根本不明白,外表看起来跟其他同龄小孩无异的你,为何会突然在大庭广众下闹情绪。

老实说,爸爸我在你被诊断为自闭儿之前,也对自闭症缺乏了解。还记得你三岁那年,当医生阿姨告知爸爸妈妈你是自闭儿时,妈妈的眼泪夺眶而出,而我当时以为没什么大不了,以为自闭症可以用药医。随着我翻阅更多有关自闭症的资料,对这种学习障碍有了更深入的了解后,心情愈来愈沉重。

有时候我会阿Q的想:是不是我以前到过哪一间庙、许过愿,祈求你一直停留在两、三岁时那可爱的阶段,永远不长大?看来神明显灵了,让你到了八岁,还继续停留在两、三岁的心智阶段,到现在还无法用完整句子表达你的需求。你就像小宝宝一样,饿了就放声大哭,吃饱了就哈哈大笑,每天无忧无虑,在自己的小小世界里遨游,完全没有应考的压力,也无需为假期作业苦恼。

记得有次我带你到大卖场闲逛,看见好多父母在一家补习中心外,等候孩子下课。一个小男孩快步走出补习中心,找到爸爸后牵着他的手,兴奋的与他分享课堂上趣事。那一刻,我感到既羡慕又嫉妒,强忍泪水假装若无其事。

我嫉妒那位爸爸有一个能与他沟通的孩子。爸爸大手牵小手,开心的与孩子聊天,这种其他父亲每天都在做的事,对我来说却是那么遥不可及。

俊乐啊俊乐,你明白爸爸为何会感到难过吗?你知不知道爸爸妈妈每一天都期盼能和你聊天?你到学校上课有没有发生什么趣事?今天有没有跟朋友分享你的便当?搭校车上学的那一个小时的车程中,你有没有看到小鸟在天空中翱翔?学校放假时,你会不会期待回马来西亚新山,到奶奶家跟堂哥、堂姊、表弟玩耍?

爸爸什么时候才可以跟你好好聊天?哪怕只是一两句?我真的真的希望那一天会快点到来,因为我老早就做好准备,让你成为我最好的朋友。我相信我会是你最好的玩伴,因为爸爸我本来就是一个长不大的孩子。可是你必须能够跟我沟通,我们才能谈心,你明白吗?

我一直都相信,快乐是一种选择。与其消极的自怜自艾,我和你妈妈选择以积极的态度,帮助你克服你的学习障碍。虽然有时候,我们难免会为了你情绪失控的问题,感到无奈、气馁,但是我们不断提醒自己,要往积极的一面去想,让自己储存更多正能量,这样才有力量跟你一起面对眼前的挑战。

只不过,爸爸妈妈毕竟不是圣人,心情难免会有高低起伏,有时也会感觉体力透支。不过爸爸答应你,不管怎么样,在接下来的日子,我还是会和你肩并肩一起努力,帮助你,克服你的学习障碍,你也不能怠惰,一定要多多加油,学习独立。

爱你的爸爸


A letter to the 18-year-old Junle

How are you, Lele?  Have you improved in your learning over the years? Did you manage to befriend some people whom you can have a casual conversation with? I’m not sure if you will be able to understand this letter now as you are only eight years old when I penned this letter.

It is still very hard for you to communicate with others today.  Besides the few commonly used sentences that you use, Mummy and I often had to guess what you are trying to tell us through your moods and moves. At times, we have to try and catch the words amongst the tunes and words that you randomly say and sing to interpret your feelings and decipher what you are trying to tell us.

Are you able to control your emotions better now?  I know that your temper flares are often beyond your control. It could be because the surroundings are too noisy, the weather is too hot and there’s a myriad of factors that may trigger your senses and makes things unbearable for you, which explains why you become agitated and frustrated.  However, in this society that we are living in, we need to learn how to adapt to these factors, how to face and handle different environments and scenarios.

Many people still do not understand what autism is about and some people  may not have come across any autistic people in their surroundings, thus they are unable to comprehend why an ordinary child like you, who looks no different from other children, would suddenly throw tantrums in public and have a meltdown.

To be honest, before you were first diagnosed with autism, Papa had absolutely no clue what autism is all about. I can still recall the times when you were three years old when the doctor told Papa and Mama that you were an autistic child.

Mama’s eyes turned red and tears welled up. At first, I did not think much of it and thought that autism can be treated with medication. As I researched and read more into the field of autism, I became more and more aware of what autism is and the learning challenges it brings.

The more I read, the heavier my heart sank.

Sometimes, I wonder if I have unknowingly visited a temple and prayed to the god to wish that you will remain in the adorable phase when you were two to three year old and not grow up at all. It seems like the god has answered my prayers.

Till today, you still cannot express what you want in a complete sentence. When you’re hungry, you will wail like a little baby and when you are full, you will be all smiles. Everyday, you live in the carefree world of yours, completely ignorant about the pressures of exams and homework. Once, I brought you to the mall and saw many parents standing outside the tuition centres, awaiting their children to finish their classes.  One of the little boys came out from a tuition centre,  quickened his pace when he saw his father, held his hand and excitedly shared  the interesting things that happened in class.  At that instant, I felt very envious, yet a pang of jealousy struck me. I’m jealous that the father has a child who can interact with him. The father’s comforting big hands holding the little hands of his son, happily chit-chatting away. This may seem like a simple everyday affair for the father and son, but to me, it seems so distant and far beyond reach.
I can only hold back by tears and take a nonchalant approach to the scene I’ve just witnessed.

Junle, do you understand why Papa is upset? Do you know that Papa and Mama have always hope that there will come a day when we can just have a casual conversation with you? Have you encountered any interesting things at school? Did you share your bento set with your classmates?  During your one-hour bus journey, did you notice the birds that were soaring in the skies? When the school holidays, do you look forward to going to grandma’s house in Malaysia and playing with your cousins there?

When will Papa be able to have a simple conversation with you? Even if it’s just one or two sentences?

I really hope that this day will come soon as I’m all ready to make you my best friend. I believe that I will be your best playmate as Papa myself is a kid at heart too. But first, you need to be able to communicate and interact with me, before we can open our hearts and talk. Do you understand?

I’ve always believed that happiness is a choice. Rather than dwelling in our own sorrows, Mama and I have decided to arm ourselves with a positive attitude so that we can help you to overcome your learning disabilities.

At times, we may feel helpless and dejected when we encountered your emotional meltdowns but we constantly remind ourselves that we need to take a proactive and positive outlook in life. This will allow us to build our “ammunition” and strengthen ourselves to face the challenges ahead with you. However, Papa and Mama are not saints and we do have our fair share of ups and downs and sometimes, we do feel deflated.

Regardless, Papa promise you that no matter what happens, I will still stand by you to work hard together, to help you to overcome all the odds and challenges. As for you, you should not idle too, you need to continue to work hard and learn to be independent.

Loving you always,

Daddy
 楼主| 发表于 2017-5-19 02:12 PM | 显示全部楼层
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2012年10月11日。乐乐总是会这样说,“loading……loading” 。自闭症不是病,不像感冒或头痛,吃药就能解决;患自闭症者也不会痊愈,这是一场看不到尽头的马拉松,需要家人扶持,以正能量去与它对抗。(注:本篇报道的图片说明,均来自乐乐爸爸李欣赏的自述。)



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2012年10月15日,为了让乐乐吃蔬菜,我们用了一个也许很多家长会不同意的方法。 今天的午餐: 糙米,萝卜,花椰菜 ,还有今天的法宝--Twisties(国外的一个芝士粟米条品牌,一种零食)。



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2012年10月21日,乐乐和他的好朋友。



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2012年12月4日,“我想要飞”。



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2012年12月4日。下午。我对乐乐说:“如果你想去游泳的话,现在你先得清理好你的玩具哦。”之后,乐乐就很用心的收拾玩具,然后又很细心的清理新买的白板。 没想到到了Jurong泳池后,天空突然下起大雨,然后听到广播说:“泳池暂时关闭。” 已经穿好泳衣的乐乐。是多么的失望,一直拉着我们的手说“我们下去吧,我们下去吧。”抱歉啊乐乐,明天好吗?明天爸爸再带你去!



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2012年12月5日,和妈妈一起看了好多好多鱼。(为了陪伴乐乐,李欣赏的妻子很早就辞去了工作。)



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2012年12月28日,又是快乐的一天。



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2013年1月22日。这是乐乐学习自己的名字和身边事物的方式。



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2013年1月25日。大家好,我的名字是李俊乐。英俊的俊,快乐的乐。



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2013年2月28日,乐乐今天的心情非常糟糕。(乐乐和许多自闭症儿童一样,会出现突然地情绪失控。)



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2013年3月9日。据研究,部分自闭症的儿童会对某些声音格外敏感,我觉得乐乐也有这样的问题。一些细小的声音都会让他感到烦躁,比如我们为他热牛奶的时候,他会捂住耳朵,不想听微波炉的嗡嗡声。



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2013年5月21日。这两天乐乐不知道为什么,总是凌晨四五点就起床。今天在床上赖了十来分钟后,跑到厨房开冰箱,原来小胖子是肚子饿了啦。



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2014年12月31日。我想,一年的365天不一定天天开心。欢笑和哭泣互相交错,那才是生活。希望来临的一年一家平安健康;至于财富啦,学业什么的,尽力就好。



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2015年9月27日。为了应节,hh妈妈决定中秋夜在餐桌上点蜡烛品尝月饼。我决定让乐乐了解点蜡烛的乐趣,包括感受被蜡泪滴到手时的痛,所以就让他把小手掌拿出来,滴了一滴蜡泪在他手指上。(乐乐“啊”地叫了出来)这也算是机会教育吧,让他明白蜡烛和火的危险。他握着自己的小手回到房里,几分钟后又走了出来说:“食指痛,痛” 。 (蜡泪滴到了他的食指)哈哈哈哈,总之,中秋节快乐。



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2015年9月26日。一直相信凡事都有个平衡点,若失去一些,就会得到另一些。乐乐的学习能力也许跟不上其他小朋友,不过他却很幸运,从出生至今,他的生活中出现很多天使,一路护着他、爱着他,让他有机会拥有不同的生活经历,从中学习如何自信地走自己的路。



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2016年10月12日。豆芽长在头上哦!从小小的绿豆,长到长长的豆芽。兴奋的不只是俊乐,其实爸爸也是每天带着期待的心情,看着玻璃罐里的豆苗慢慢地成长。短短的几天,改变就那么的多,还蛮好玩的啦!



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