七个月努力的成果

时针指向晚上10点,我们展开哄乐乐入睡的步骤:先是陪他一起收拾玩具,接着提醒他上厕所,然后再带领他跟我们一起熄灯上床。
有好长一段日子,我们最怕他即将入眠的那一刻:原本已安详合上双眼的他会突然嚎啕大哭,每晚都要哭上近半小时,哭到累了才入睡。我们确定他不是身体不适,但是却找不出让他如此不安、难过的原因。翻阅一些讨论有关自闭儿情绪变化的书本,我们只能推断,这可能是他宣泄情绪的方式。

楼上邻居相信是受不了他刺耳的哭声,连续几晚,每当乐乐开始哭闹时,天花板就会传来楼上用铁锤击地抗议的声音。尽管心里满是歉意,但是我们用尽各种方法都无法安抚乐乐不哭,结果只好在每次他一开始哭闹时,赶紧把窗户都关起来,免得干扰邻居。

那天B问我拿七个月无薪假的感想,我向他忆述这段经历。也许因为这半年来见证了乐乐的许多变化,他已忘了有这件事,但是我却清楚记得自己当时无法理解为何乐乐情绪起伏不定的那种无助感。

直到现在,我们仍没有找出当时导致乐乐在临睡前哭闹的理由,但是庆幸的是,他早在好几个月前就已不再这样无故哭闹了。可能是因为我们后来尽量不让他在白天兴奋过度,也可能是因为我们控制了他每餐摄取的热量,又或是因为我们刻意让他在白天多跑动,让他用尽体力晚上好入眠⋯⋯不管究竟是哪个方法发挥了作用,庆幸这段夜半哭啼的日子已成往事。

过去七个月来,见证了乐乐的多项改变和成长,让我确定当初拿无薪假的决定没有错。

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A letter from HH Mama to Lele

Dec 21,2012 Friday 

Dear Jun Le,

This is Mama’s first letter to you. Thought I’ll start penning down the things we did together, the improvements you’ve made and our hopes and wishes for you, so that one day, when you are grown up and when you’ve learnt to understand what we’re writing, you’ll be able to relive the memories of the wonderful times we spent together through this little diary.
In a week’s time, Mama will be going back to work full-time at the newsroom. Can’t believe the past seven months just flew past like that. 
Mama is really proud of your achievements over these few months. You really amaze us with the things you say sometimes, and it makes us wonder if we’ve underestimated your cognitive skills. 
I was really surprised and truly elated when you came over to me last week and said “I’m hungry”. You’ve never been able to express your needs that well, Mama is so proud of you.
I can still remember how we used to be afraid of taking you out to the mall or anywhere else. We’re always fearful of your meltdowns in public and I can still remember our helplessness during those times.
You probably cannot remember, but there was once we took you on a bus ride to Haw Par Villa. On the way back, on bus no 188, you got really upset because the air-con in the bus was not working and it was getting really stuffy. You made such a big fuss, we had to alight before we reached our stop.The other passengers were casting disapproving looks at us as if we were indulgent parents who could not control our willful child.
As we’re unable to always successfully prevent such meltdowns in public, your Papa is always hesitant whenever I suggested taking you out. I reasoned that always  keeping you in a familiar environment is not the way to go. I want you to learn through experience how to behave in different situations, despite knowing that it may be difficult to control you sometimes. I insisted on taking you on bus rides, MRT rides, bringing you to the beach, we even braved two 6 hour plane rides to and back from Shanghai. 
You’ve shown us that you can learn how to behave in different situations, you just needed the chance to try.
One of my biggest achievement during this seven months break was toilet training you. It was an unforgettable experience. You were already five years old, and the teachers at Feiyue were terribly concerned that if you continued to poo in your diapers, no special school will take you. The teachers mentioned an example of a 20-year-old autistic young adult from St Andrew’s School who was still on diapers, and I was worried that you’d be like this too. I was determined not to let this happen.
Not sure if you can remember Mama breaking down and crying together with you in the room when you rejected all my attempts to help you to sit on the throne. Papa was away in Hokkaido on a work trip, and it was just me and you. You finally relented when I threatened to walk out of the house and leave you on your own. Others may find it ridiculous, but the sense of relief I felt when I saw you making your first attempt at pooing in the toilet bowl was indescribable. Not only was it a big milestone for us, it also signaled to me that you are able to learn the ways of living like the rest of us in this society, you just needed a bit more time and help.
I’ve heard from other parents of special needs children about their worries for their children when they pass on. Some parents invested in huge trust funds or insurance policies for their children, others silently prayed that the child will not outlive them. Sometimes I’d also worry, but I realized that it’s not going to be of much help worrying. We’d try to save as much as we can so that you’ve got something to fall back on when we’re gone, but I guess a more practical gift for you is to do all we can to help you overcome your learning disability, so that you can live independently when you’re grown up. 
Not sure how the future holds for us, but it’s ok, we’ll take one step at a time ok?

Love,
HH mama

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