Family Support / Respite （作者 Jenifer Simpson）第三部分

Parenting a Child with Cerebral Palsy（3）

Keeping Things Private
In the same way that you may not want to share your anger with anyone and instead resolve things privately or through spiritual counsel, you may find other intrusions annoying. Many parents talk about the effects a child with a disability has on family members' privacy because suddenly new persons are brought into the family circle. A series of professionals who examine, give advice and sometimes even judge, or appear to be judgmental, about the actions of the individual family members may be impacting everyone.

One parent stated that the hardest part for her was "having to turn to experts -- it was difficult to have someone tell me what to do with my child," as if you don't know how to do it.

Some aspects of your life are simply no one else's business. If you do not want to discuss something or if you do not want your child's picture taken, it is your right to say "no" or "not right now" or "I'll think about this and get back to you" or "I'd prefer it if we did this another time." I have stated on several occasions that "I just can't handle this right now," and walked away.

Persistence as a Way of Life
Parenting is not easy, but most all parents try to do the best job they can or know how to do. It can be much harder when well-meaning people tell you that there are some goals they think your child will never be able to reach or that you must stand back and accept the fact that your daughter will never walk. A doctor may make a statement like "oh, he doesn't want to walk" or a family member or friend may tell you or imply you are wasting your time if you persist in a particular course of action.

There is nothing wrong with you if you are not willing to give up a certain attitude or course of action you want to take. Your child has an amazing potential for learning and no one knows what event or combination of events will make a difference in your child's life. Also, it is you that will live the consequences of any of your decisions, and not the well-meaning advisors who come and go in our lives.

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

译：
养育脑瘫孩子（3）

保留隐私空间
就如同你可能不愿意与任何人分享你的愤怒而更愿意私下里自己或是通过心灵咨询来解决你的问题一样，你可能发现其他对于你生活的干涉十分恼人。很多父母都谈论到一个残障的孩子对于家庭成员的隐私空间所产生的影响，因为几乎是一瞬间新的陌生人就被带到了家庭圈子中。一系列对于家庭成员的行动不断检查，给予意见，甚至有时做出判断，或者似乎是在评判的专业人士或许正在影响着每一个人。

一位家长曾指出对她而言最困难的部分就是“必须要面对各种各样的专家——让一个人对于我该如何照料和应对我的孩子不断指手画脚是十分难以忍受的事”，好像你不知道该怎么做似的。

你生活中的某些方面简单来讲完全不关任何人的事。如果你不想谈论某件事或你不想他们拍你孩子的照片，你有权说“不”或者“现在不行”或者“我考虑一下再给你答复”或者“如果换个时间我会十分乐意的”。我自己在一些场合就曾经明确表示过“我现在不能处理这个”然后转身离开。



让坚持成为你的生活方式
养育孩子并不容易，但是绝大多数家长正竭尽他们所能做到最好或是明确知道如何实行。当善意的人们告诉你他们觉得有一些目标你的孩子永远都不可能达到或你的女儿永远都学不会走路时，这也许会变得困难很多。一个医生可能发表一个类似“噢，他不愿意走路”的陈述，而一个家庭成员或朋友也可能告诉你或者暗示你如果继续坚持某种做法你只会浪费你的时间。

如果你不愿意放弃某种态度或是某种你想要采取的方法进程，这完全没什么错。你的孩子拥有极大的学习潜力，没有人知道什么事件或是什么事件的组合会对你孩子的人生产生影响。另外，你才是那个将会承担任何你所做的决定后果的人，而不是那些善意的在我们生活中来了又走的劝告者。



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