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多孩的小胖威利家庭將會(huì)面臨怎樣的挑戰(zhàn)?

2023-05-18 21:33 作者:小胖威利關(guān)愛中心  | 我要投稿

與小胖威利患者一起生活會(huì)對(duì)家庭產(chǎn)生巨大的影響,尤其是對(duì)那些不止一個(gè)孩子的家庭。在任何時(shí)候,小胖威利的兄弟姐妹會(huì)感受愛、恨、悲傷、憤怒、自豪、尷尬、保護(hù)、怨恨的情緒,有時(shí)這些情緒可能會(huì)同時(shí)出現(xiàn)。

有些情況似乎不太公平,例如“我們現(xiàn)在必須回家,因?yàn)榧s翰尼正在崩潰”,“把那個(gè)給約翰尼,否則他會(huì)崩潰”或“不要那樣做”(即使約翰尼剛剛做了同樣的事情),“你應(yīng)該更清楚”,他們的父母似乎在小胖患者身上花費(fèi)了更多的時(shí)間、精力和金錢。

然而,隨著年紀(jì)增長(zhǎng),兄弟姐妹可以理解小胖威利的特殊需要,并成為他們的巨大支持。在生活的摩擦中,兄弟姐妹將學(xué)會(huì)同情,寬容和耐心,這將有助于小胖威利的一生。


父母必須在其他孩子與小胖的特殊關(guān)照之間找到一個(gè)平衡點(diǎn),不能讓其他孩子承擔(dān)太多的責(zé)任,因?yàn)檫@可能會(huì)引起摩擦。父母還必須兼顧孩子們的所有需求,想辦法讓他們每個(gè)人都覺得自己很特別。


本譯文僅供參考,只有英文原稿才可以被視為權(quán)威資料來(lái)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.


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