would a explicit thread devoted to extended family member bother you? Or do you think it should be a subforum (which might make you less inclined to open it?) I had thought of a thread to see if there was enough interest, but maybe straight to requesting a subforum is the way to go???
Or do you think MDC should not host discussions at all around issues with extended family members and SN?
Quote:
This issue seems to have just added another level of difficulty to an already...complex...relationship.
Well, considering that the board is called "Special Needs Parenting" I would take
This forum was set up to meet the needs of and provide support for families with special needs children.
to mean the family of the parents with the special needs child--"family" meaning the parents and their children 
.
would a explicit thread devoted to extended family member bother you? Or do you think it should be a subforum (which might make you less inclined to open it?) I had thought of a thread to see if there was enough interest, but maybe straight to requesting a subforum is the way to go???
Or do you think MDC should not host discussions at all around issues with extended family members and SN?
Maybe it would be better to start a thread in Q&S to get more opinions and since this is a bit OT here (even though maybe we've past the point of no return 
). I'd be glad to participate there.
Maybe it would be better to start a thread in Q&S to get more opinions and since this is a bit OT here (even though maybe we've past the point of no return ). I'd be glad to participate there.
Thanks!
Or do you think MDC should not host discussions at all around issues with extended family members and SN?
I think the personal growth board would be an appropriate place for those topics. I don't want to see more forums added because I think the site is cumbersome as it is.
I wouldn't have a problem with threads on "extended family and special needs" being in personal growth, and posts on this board requesting people visit the thread *if they feel like it.*
But I don't believe that most people who've not raised a SN child have any idea what SN moms go through, and keeping this board an extremely safe place is paramount. Posts about how someone else isn't doing a perfect job with their SN kid really or seems grouchy or whatever truly, deeply have no place here.
So often when people are posting about extended family they judge and blame, and this isn't the place for that. Often, when people post about extended family (regarding sn or other issues) they mostly want to vent and be told they're right.
They don't want to be told how they are coming across.
And part of the problem with posting here is that we will tell you. 
Linda - personal growth - thanks!
I did post a thread here asking what people thought.
It isn't about me - if people really think I should do a forum somewhere else and not here, that is cool.
Op - sorry for the thread hijack.
I do agree that there is no place here for extended family asking for extra support from the parents of SN kids - but I DO think its fair for extended families to also need support in helping raise a SN kid. Moreover, I also think its GREAT for extended family to ask for advice on how to genuinely help the parents of SN kids in their family.
I guess I understand the OP's situation but from the parent of the SN kids' perspective. My sister has been generally crappy at helping us deal with the whole process of deciding "hey maybe DS is SN," to the evaluation, to the diagnosis and now the process of figuring out how to live our every day lives. I WISH someone had told her how to help us better. I wish someone had told her: offer to take the kid for a little while and give me some time away, don't act scared or freaked out by his intensity, let me know that you love him and all of us even if he is different, ask me how to respond when he does things you don't understand, be understanding and supportive when I freak out or break down. The biggest one for me: HELP ME BE INCLUDED IN FAMILY ACTIVITIES. Since I'm the mom and DS has a hard time dealing with family events, I'm the one that often ends up upstairs in a room or out back alone. Come talk to me, offer to help with DS so I can sit down for dinner, help me wrangle him so I can be part of things and maybe he could also join in more readily. Accommodate DS and help HIM enjoy family time as well. Make him feel like he is an important member of the family as well.
Anyway, I wish someone had said that to my whole family. If one of them had come here, I would have loved for them to get good advice on how to help me and who better to give that advice but other parents of SN kids?
I feel rather sad that we are suggesting we are all so traumatized (okay I'm exaggerating) that we can't handle someone coming in here and saying "Hey, my nephew/kid's best friend/brother has special needs and I want to know how I can support them".
Why not trust ahead of time that someone who comes here for that reason is seeking help and advice, just like everybody else on MDC? And if that person gets "judgemental", well then isn't this a great place to educate them? And there IS a user agreement in place and so there is recourse for any poster who becomes disruptive.
I dunno. I think it's a big mistake to shut out extended family and friends from this discussion. You have to assume from the start that people will be respectful and well-intentioned, then act accordingly if they are not.
I was pretty darned ignorant about HFA and what it looks like (i.e. it's not the Rain Man, but that 7 year old throwing a tantrum in the store) and now I feel good that I can educate others. Even my own mother has undergone a sea change in attitude towards children (before she would always assume "spoilt and bratty", now she wonders about special needs and feels sympathy for the parents).
Just my two cents...
I feel rather sad that we are suggesting we are all so traumatized (okay I'm exaggerating) that we can't handle someone coming in here and saying "Hey, my nephew/kid's best friend/brother has special needs and I want to know how I can support them".
I can't speak for anyone else, but that's certainly not what I was suggesting. Actually, I think that would be a perfectly appropriate question and fits within the forum guidelines.
I feel rather sad that we are suggesting we are all so traumatized (okay I'm exaggerating) that we can't handle someone coming in here and saying "Hey, my nephew/kid's best friend/brother has special needs and I want to know how I can support them".
I think if the question is asked in a direct kind of way like that it would be fine. The problem is, that when the question really becomes a judging session about the special needs parents, then the poster needs to be aware that the responses back may be blunt. This thread started with a somewhat judging tone, then when the responses were blunt (though certainly not untrue) people became upset. A lot of people who post aren't looking for the real answer of what a special needs parent would want from them, they're looking for agreement or sympathy. Practical advice is fine. But if the poster is looking for a shoulder to cry on because they are having difficulty with their extended family who have special needs children, this is a bad place to look for support. It's not really fair to expect the parents of special needs kids to carry the burden of being empathetic with people on the other side of the fence in a forum where they are supposed to feel safe venting about their own needs. What special needs parent hasn't received well meaning but hurtful "help" from people who thought that their real issues were poor parenting, or "if they only did this" or "they need to look on the bright side". An honest response from a special needs parent is that that sort of "help" isn't helpful and that family should back off and support rather than advise or compare. If the responder isn't eloquent on the subject, they are suddenly hurtful even though the entire topic may have struck a nerve and hurt them.
Hope that made sense. I just feel these discussions turn into situations where people feel like everyone has to be friendly and supportive about things they don't feel friendly about. It's good to have a place where it isn't necessary to have to look at everything from the point of view of people whose kids don't have special needs.
Wanting practical advice is very different from wanting agreement or sympathy.
A lot of people who post aren't looking for the real answer of what a special needs parent would want from them, they're looking for agreement or sympathy. Practical advice is fine. But if the poster is looking for a shoulder to cry on because they are having difficulty with their extended family who have special needs children, this is a bad place to look for support. It's not really fair to expect the parents of special needs kids to carry the burden of being empathetic with people on the other side of the fence in a forum where they are supposed to feel safe venting about their own needs. What special needs parent hasn't received well meaning but hurtful "help" from people who thought that their real issues were poor parenting, or "if they only did this" or "they need to look on the bright side". An honest response from a special needs parent is that that sort of "help" isn't helpful and that family should back off and support rather than advise or compare.
I think you nailed it.
There have been threads here where a non-sn parent asked a question and got answers and it all went fine. What doesn't work here are the "my in-laws/neighbors/co-worker has a sn child and are totally screwing it up. How can I make them do it right and not make such a big deal over it? " threads. Those just don't work.
I think part of it comes down to if the poster is actually wanting INPUT or just wanting VALIDATION.
The other thing that plays into how the threads go is that when a SN mom, esp one who is a regular contributor on this board, is attacked in any way, I know that I feel very protective of her. I suspect I'm not the only one. Although this is rough board dealing with tough issues, we I think we are a pretty tight group (for a bunch of people who only know each other on the internet!). When someone who isn't a part of the group, either by having the same experience or by participating in the board for awhile, wants to argue, we circle the wagons.
I think if the question is asked in a direct kind of way like that it would be fine. The problem is, that when the question really becomes a judging session about the special needs parents, then the poster needs to be aware that the responses back may be blunt. This thread started with a somewhat judging tone, then when the responses were blunt (though certainly not untrue) people became upset. A lot of people who post aren't looking for the real answer of what a special needs parent would want from them, they're looking for agreement or sympathy. Practical advice is fine. But if the poster is looking for a shoulder to cry on because they are having difficulty with their extended family who have special needs children, this is a bad place to look for support. It's not really fair to expect the parents of special needs kids to carry the burden of being empathetic with people on the other side of the fence in a forum where they are supposed to feel safe venting about their own needs. What special needs parent hasn't received well meaning but hurtful "help" from people who thought that their real issues were poor parenting, or "if they only did this" or "they need to look on the bright side". An honest response from a special needs parent is that that sort of "help" isn't helpful and that family should back off and support rather than advise or compare. If the responder isn't eloquent on the subject, they are suddenly hurtful even though the entire topic may have struck a nerve and hurt them.
Wanting practical advice is very different from wanting agreement or sympathy.
Bolding mine.
I think some of the above is unfair and over-generalising.
I do not doubt for one minute that some friends and extended family come on and say clueless and occasionally hurtful things. It takes time to come to grips with SNs and how to handle relationships pertaining to them - there is an evolving learning curve in being a loved one of a SN person.
I suspect most extended family members who bother to post want to support their family - or else why the heck would they bother writing? Why would they be involved *at all*? Most extended family members LOVE their sisters, brothers, nephews, nieces.
I have posted (not here) wanting agreement or sympathy on a issue. Why they heck not? They are human emotions to want. I see it in many forums - people come on and vent about their family. If they say something totally out of line, sometimes people will call them on it, but often they just vent. I bet special need parents come onto this forum and vent. I completely understand if you do not want to hear extended family members vent, but to act like venting is in itself a crime seems off.
Lastly the idea that most extended families usually come here looking just for agreement or sympathy seems very dismissive of real issues that extended family deal with.
I reread the OP. Yes, she said a clueless thing or two- but do you really think she only came here looking for sympathy or agreement? She seemed to be genuinely searching for how to better communicate with her sister, and was concerned with how to support her sister.
Here is a fairly serious issue my family deals with. It is not essential at all to this post (just think serious issue) - so skip it if you like.
Warning: Spoiler! (Click to show)
One of my nephews is quite violent. This was never great, but has been more and more concerning as he grows bigger. He gouged my mothers arm (and she is quite frail) and has bitten, headbanged, kicked or slappped every member of my family. It is at the point where I rarely allow my kids to see him. I feel horrible guilt about it, because I never wanted to abandon or have my sister feel I abandonned her kids due to special needs.
For someone to say I am just looking for sympathy if I post such a thing is so dismissive.
I, for one, do not mind if extended family are not welcome here because the dominant population is special needs parents and forum particpants collectively decide they really cannot or do not want to handle the issues of extended families (in which case the user guidelines could use a rewrite). That does not mean extended family issue are not important, though, or that we all just come here looking for sympathy.
OP, this post might be of help to you: http://parentingwithaspergers.blogspot.com/2012/01/support.html
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.
On another note, Kathy, I would never think you were just wanting sympathy for the serious issue your family deals with. We've had parents come on this board with similar issues regarding safety of themselves or family when with a violent SN child in the extended family. I've mostly seen supportive and helpful answers. The OP was having a generalized problem getting along with a sister going through difficulties coming to terms as her child is being evaluated for SN. It's not really the same issue, and it's never been stated that posters who are extended family all want only sympathy. I've only ever seen evidence that you are a loving sister and are trying your best to cope. I just dislike how personal this whole thread is getting.
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 reread your post, and it did come across to me as you saying "extended parents want to post here looking for sympathy." You might have been trying to hammer home a point, but it grated to me. You were not the only one to say such things, btw, just the most recent.
Personally, it drove me cray that this thread degenerated into a hijack on how extended family on a special needs board are treated.
Yes, my bad. 
The OP seemed mostly missing in action but it is hard to know why - thread hijack? got what she wanted from it? Not happy with what she heard? who knows? A lot of my heavy participation in the thread hijack came from a negative experience I had here a couple of years ago (I know! lame!!!) plus a decent amount of observation of negative treatment of non-parents (some of it deserved) while lurking. This thread was the straw that broke the camels back.
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.
I would suggest that almost everyone be given some slack (slack to me does not mean ignoring cluelessness or harsh posting, but pointing it out and moving on.)
I made up with Erin-Yay a while ago. This isn't about one poster being firm with extended family, it was about (to me) if this is a safe place for extended family to post. For myself, I probably will post elsewhere and link here - I have come to the conclusion that other than practical needs it is probably better for everyone if extended family posts elsewhere.
Also -
I am not mad at you - I suspect we are just looking at things through different filters and baggage.
edit to add: Just read your last post. Thanks for it. Sending some good mojo to Nova Scotia 
I didn't really get I was coming across that way. Thanks for understanding. And the "mojo".
My first reaction when I saw this thread in the forum was, "Oh, crap, my sister found me online!"
But I don't think my sister will ever attempt to find this forum.
I think the OP didn't realize what a sensitive topic this was when she started. I actually find it comforting that relatives with positive, loving intentions sometimes come here to ask for guidance.
OP, go easy on your sister and BIL. There may be more going on in their heads than you realize. I think your main job is to listen and validate their concerns at this point. This situation is not going to be "fixed" quickly or easily or painlessly. Please keep the relationship with your sister healthy and alive for your nephew's sake, especially when it is most difficult to tolerate your sister's moods. I am still grieving for the way my sister heartlessly abandoned me and my DS1 when we needed her support the most.
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