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多孩的小胖威利家庭将会面临怎样的挑战?

2023-05-18 21:33 作者:小胖威利关爱中心  | 我要投稿

与小胖威利患者一起生活会对家庭产生巨大的影响,尤其是对那些不止一个孩子的家庭。在任何时候,小胖威利的兄弟姐妹会感受爱、恨、悲伤、愤怒、自豪、尴尬、保护、怨恨的情绪,有时这些情绪可能会同时出现。

有些情况似乎不太公平,例如“我们现在必须回家,因为约翰尼正在崩溃”,“把那个给约翰尼,否则他会崩溃”或“不要那样做”(即使约翰尼刚刚做了同样的事情),“你应该更清楚”,他们的父母似乎在小胖患者身上花费了更多的时间、精力和金钱。

然而,随着年纪增长,兄弟姐妹可以理解小胖威利的特殊需要,并成为他们的巨大支持。在生活的摩擦中,兄弟姐妹将学会同情,宽容和耐心,这将有助于小胖威利的一生。


父母必须在其他孩子与小胖的特殊关照之间找到一个平衡点,不能让其他孩子承担太多的责任,因为这可能会引起摩擦。父母还必须兼顾孩子们的所有需求,想办法让他们每个人都觉得自己很特别。


本译文仅供参考,只有英文原稿才可以被视为权威资料来源。


英文原文

PWS AND SIBLINGS


Living with someone who has PWS can have a huge impact on families, especially on those with more than one child.  At any given time the sibling of a child with PWS can feel love/hate, sad/angry, proud/embarrassed, protective/resentful and sometimes all these emotions all at once.


It may seem unfair to hear, “we have to go home now because Johnny’s having a meltdown”, “give that to Johnny or else he’ll have a meltdown” or “don’t do that” (even though Johnny just did the same thing) “you should know better” and it may seem that their parents are spending more time, energy and money on their child with PWS.


However, depending on their age, the siblings can come to understand their brother/sister’s special needs and be a great support.  Amongst all the chaos, the siblings will learn empathy, tolerance and patience which can only help them throughout their lives.


Parents have to find the right balance between involving their other child/ren in their child with PWS’s care and giving them too much responsibility which may cause friction.  Parents must also juggle all their children’s needs and find ways to make each of them feel special.


关于小胖中心


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