kathymuggle, I did not say that all the posters who are extended family do this or that the op only looked for sympathy or agreement. And, I didn't say that all extended family say these hurtful things that you bolded. I never once said that extended family issues are not important. I never said a place to vent is a bad thing. That's you overgeneralizing my post.
I also think that there is a place for sympathy and support rather than practical advice, but that it belongs in personal growth when we are talking about extended family. Most other discussions on extended family that are not about special needs end up in personal growth, so why not this?
This perfectly illustrates my point why this isn't the best place for these discussions. The OP does obviously love her sister. She also stated that "at least things aren't terminal" and there had been some disagreement in the family surrounding screening for chromozone (sorry, can't spell this) deletions. These are real reasons why the right thing would be to give the sister a little space. But if someone states things plainly it seems to cause hurt.
Personally, it drove me cray that this thread degenerated into a hijack on how extended family on a special needs board are treated. Lots of good, more eloquently put advice was given, which is why I didn't have anything to add earlier. Plenty of special needs parents were helpful. But because one person, due to a combination of brain make-up and the thread striking a nerve, was blunt, this turned into a "special needs parents should be more supportive of extended family posters" type dilemma. By virtue of genetics, if you are on a board of parents of SN kids, you are bound to have parents who are neurologically different, whether officially or maybe on the borders of NT. If they are on the spectrum or have non verbal learning disabilities, they will probably be a little more blunt or see words for what they are. What you are generalizing as lack of sympathy or understanding could be just plain saying things clumsily. It struck my nerve because I could see myself if it had been 7 years ago having something come out wrong like it did for ErinYay. (Sorry, Erin, I know you don't need and aren't looking for defending, just feeling like I have to say why this whole thing is driving me nuts). I can very easily see my ASD son inadvertently coming out like a total jerk like that when he's grown. You're complaining that not enough slack is being given to the extended family (and hey, that very well may be true) but where's the slack for the special needs parent responding? We aren't all word smiths.
The great thing about the special needs board is people can speak to others who have been through similar things without pussy footing around and walking on eggshells. If you can take plainly put advice, then great, ask for it. If you're going to read more into answers than what's there, and you need people to be very gentle with you, then maybe it's not the best board.
Anyway, this is the last I'm saying on this issue. I just thought I should point out that my words certainly aren't being taken at face value, here.