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Family Support / Respite (作者 Jenifer Simpson)第一部分

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Family Support / Respite (作者 Jenifer Simpson)第一部分 Empty Family Support / Respite (作者 Jenifer Simpson)第一部分

帖子  Admin 周三 八月 01, 2012 6:32 pm

Parenting a Child with Cerebral Palsy(1)

Being the parent of a child with disabilities is not really a whole lot different than being a parent of an average child, or so they tell me, but I really don't know because my only child has severe disabilities as a result of cerebral palsy. It is just that such a fuss can be made about it by your friends or family or the professionals around you. The biggest difference is probably that after you get through the first hoop of finding out about your child's disability, you will find the volume of work is bigger, louder and more compelling.

However, at the outset many professionals talk about parents going through something called 'the grieving process' when they first learn of their child's disability. According to this theory, parents first go through a stage of shock. This is followed by a sense of sorrow or grief where parents are thought to mourn for the loss of the "perfect" child that most parents hope for and expect. Then comes denial, according to this theory, where parents deny that their child is really disabled, or perhaps seek out other doctors to get second, third and fourth opinions. Anger and resentment come next, which may include going on searches for cures or fixes, and then finally comes acceptance.

This theory about stages of feelings -- shock, grief, denial, anger and acceptance -- will often be used by the professionals around you.

Doctors, therapists, teachers, early intervention specialists, case workers, disability advocates, lawyers, and a myriad of others who interact with you and your family may describe your feelings and sometimes your actions to you using this feelings model. Although, this grieving process is only a theory, it is widely believed, and you may in fact have all these feelings. But you also will find you don't fit this scenario and may feel you are being told how to feel and resent having certain beliefs or thoughts imposed upon you.

You have the right to whatever feelings you may have, and you may find that the course of your feelings is not like the linear model of this theory. For instance, I cycle through denial and anger periodically in new ways when I am confronted with a new aspect of my son's disability or when I must deal with a new set of therapeutic procedures for him. Occasionally there is something that sets off my 'grief', such as soapy television story or news event that evokes this feeling. Even though I am now ten years into 'accepting' my son's disability, I still have the right to go cry again.

The following is a discussion about feelings and thoughts that may assist you when it all gets a bit crazy.

to be continued...
Reference:http://affnet.ucp.org/ucp_channeldoc.cfm/1/11/51/51-51/775

译:
养育脑瘫孩子(1)
当一个身患残疾的小孩的父母与作为一个正常孩子的父母并没有什么不同,或者说其他人是这么告诉我的,但是对此我真的不确信,因为我唯一的小孩就因为脑瘫而拥有严重的身心障碍。只是多数时候那些你身边的人-朋友,家人,或是专业人员却总是会如此地对这件事大惊小怪。我想最大的不同或许就是当你刚刚经受过第一关-发现你孩子的残疾后,你会发现接下来所为此需要做的大量工作既繁重又劳神。

然而,起初,很多专业人士便形容所有这些家长在刚刚发现孩子的问题时所经历的一个心理过程为“悲痛历程”。根据这个理论,家长们先是经历打击这一步骤。紧接着家长们就会产生悲伤沉痛的感觉,在这一阶段,家长们被认为将会悲切地追悼那个他们所期盼却失去了的健全的孩子。然后就是否认现实的阶段,也就是这个时候,家长们往往会拒绝承认他们的小孩真的患有残疾,或者会寻求其他医生给出第二、第三、甚至第四次的诊断。愤怒和怨恨通常会接踵而至,这期间的代表行为也包括极为热切地到处寻找可能的治愈手段,之后最终便会迎来接受这一阶段。

这个描述了各个阶段的情绪-震惊,悲痛,否认,愤怒,和接受-的理论通常都会被你身边的专业人员所采用。

医生,治疗师,老师,早期干预专家,社会服务人员,残障事业倡议者,律师,和无数其他与你和你的家人相互有所关联的人可能有时将你的感受和行动以这套情绪模式解释给你听。尽管这个“悲痛历程”只是一个理论,它仍旧是被普遍认同的,并且你实际上或许真的拥有着这些情绪。但是你也有可能发现自己并不符合这套模式,同时或许你甚至觉得你被告知暗示着应当产生何种感受而因此对这种思想的强加充满着抵触与厌恶。

你有权产生任何可能产生的感受,再有你也许发现了你所有情绪的进程并非完全符合这个理论所提出的线性模式。例如,当我自己面对儿子残障的新方面或我需要为他应对一组新的治疗程序时,我就常常在否认现实与愤怒怨恨之间不断循环徘徊。偶尔也会有一些人事物触动了我的悲伤,比如说有些激发起这种情感的伤感的电视故事或新闻报道。即使我已经接受我儿子的残疾状况十年了,我仍然拥有随时痛哭失声的权利不是吗?

接下来是一些当你觉得一切都有点疯狂并且难以承受时或许会有帮助的关于感受和想法的讨论。

Family Support / Respite (作者 Jenifer Simpson)第一部分 Images11

Family Support / Respite (作者 Jenifer Simpson)第一部分 Images10

Family Support / Respite (作者 Jenifer Simpson)第一部分 U1816610

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未完待续。。。
出处:http://affnet.ucp.org/ucp_channeldoc.cfm/1/11/51/51-51/775


由Admin于周二 十月 16, 2012 3:45 pm进行了最后一次编辑,总共编辑了3次
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帖子  王ISA 周一 八月 20, 2012 7:34 pm

我确切的经历了这些过程。

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