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Old 01-27-2012, 05:07 PM
 
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Originally Posted by ErinYay View Post

The extended family's feelings and entirely valid and important, but a board for support for the actual parents of SN kids isn't really, imo, the best or most appropriate place to deal with those feelings. Most of us have had more than our fair share of "I told you so"s and "you're imagining things" and "it's not so bad" and "so-and-so's kid has XYZ and he turned out just fine" and "I need to tell you how *I* feel about your child's issues" and, at least for me, my patience for this stuff is nil.

 

Everyone posted essentially the same thing- back off, take your time, give your sister space, etc. .....

.....

And, really, it sucks, but if you have a loved one with an ASD, you better grow a thick skin. 


yea, the stuff posted on this thread has been VERY light compared to what most of us with a SN  child have put up with from relatives.

 

The "everybody needs to be uber nice to me because I don't have a clue and my skin is too thin for you to just tell me the things I don't know" thing just doesn't go over well here.  

 

This is a heavy board. People are dealing with major things. And if a parent of typically developing children can't handle hearing how they sound from those of us on the other side, then may be they should really look at themselves. Because they are most likely coming across the same way to the people IRL that they want to support -- who aren't going to just hit them between the eyes with it.

 

Some of this may be what they would say to you if they could formulate it into words.


but everything has pros and cons  shrug.gif

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Old 01-27-2012, 07:57 PM
 
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nm - argumentative and repetitive.  I think this thread is a little triggering for me, so I will back off. 

 

I hope you found some useful advice, OP.

 


 

 

 

 

 

 

 

 

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Old 01-28-2012, 03:06 AM - Thread Starter
 
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I'm still reading replies,

I'm just very confused by how this thread has veered.

 

I cannot see how it can be construed as my needing support for my feelings.

 

Really I was just after facts.

 

And when you say "back off", umm, from what?

I think I have told her a total of 3 times that he should be assessed, I dropped it immediately when it was clear she was not open to the conversation and waited months to bring it up again and only in context. I did kind of feel obligated to do so because I felt he needed immediate help

I don't get "back off"at all.

 

She brings it up, I say something, she explodes, I'm lost.

She clearly wants something from me, I had no idea what.

 

Somebody said acknowledge her feelings, BINGO, thank you! I am a 'fixer' type and apparently 'fixing it' wasn't what she needed.

 

Also, I'm quite certain that she isn't feeling bombarded by my feelings.

Sister is of the opinion that I do not posess emotions and has referred to me in the past as "The Robot".

She has also told me that I am "supposed to be there" in these types of situations

But what on earth does that mean?

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Old 01-28-2012, 04:38 AM
 
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Originally Posted by aus5 View Post
She brings it up, I say something, she explodes, I'm lost.

She clearly wants something from me, I had no idea what.

 

Somebody said acknowledge her feelings, BINGO, thank you! I am a 'fixer' type and apparently 'fixing it' wasn't what she needed.

 

Also, I'm quite certain that she isn't feeling bombarded by my feelings.

Sister is of the opinion that I do not posess emotions and has referred to me in the past as "The Robot".

She has also told me that I am "supposed to be there" in these types of situations

But what on earth does that mean?


It got lost in the thread, but I recommended that you read up on non-violent communication. Here is a link to a really awesome book:

 

http://www.amazon.com/Nonviolent-Communication-Language-Marshall-Rosenberg/dp/1892005034/ref=sr_1_1?s=books&ie=UTF8&qid=1327750114&sr=1-1

 

This book can teach you what it means to "be there."

 

Part of what is happening between you and your sister right now is that she does need something from you, but not what you are giving her. She's angry that you are failing to give her what she needs, even though she cannot clearly articulate what she needs (which makes her a completely normal human being).

 

Part of why she is angry is because she is grieving, and anger is part of grief.

 

 


but everything has pros and cons  shrug.gif

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Old 01-28-2012, 06:13 AM
 
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Originally Posted by aus5 View Post

And when you say "back off", umm, from what?

I think I have told her a total of 3 times that he should be assessed, I dropped it immediately when it was clear she was not open to the conversation and waited months to bring it up again and only in context. I did kind of feel obligated to do so because I felt he needed immediate help

I don't get "back off"at all.


Well I won't presume to speak for the others that said it, but by "back off" I meant quit trying to fix things and offering unsolicited advice and trying to make her feel better by saying things that will just make things worse like "it's not terminal."  Just be there for her, listen to her, and let her know you hear her.  It's pretty clear cut really.  You came here asking for advice from parents with children with special needs, and pretty much everyone gave you the same advice just worded in different ways.  I'm not sure what more you need.  

 

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Old 01-28-2012, 07:36 AM
 
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Originally Posted by aus5 View Post

 

 

She brings it up, I say something, she explodes, I'm lost.

She clearly wants something from me, I had no idea what.

 



She might just be mad, and you are a safe person to explode on.

 

 

When she explodes you could say that you have noticed she seems mad at you.  Ask her if you are doing anything that is bugging her, or why she seems so angry with you.  Maybe asking her what is up will help give you more information on if you are doing anything to tick her off or what she needs from you in conversations.  

 

If you do not think a frank conversation will work (or do not want to burden one with her now), I would adopt a conversation pattern where you reflect back what she says.  You can ask clarifying questions, or questions about her opinions, but you do not give your own opinion.  

 

Ex:

 

Do Not do this:

 

sister:   Ds school is driving me crazy!

you:   You could switch schools .

 

or this:

sister:  DS's school is driving me crazy

you:     I hear you!  My daughter school is as well (she probably does not want to hear about your issues with your neurotypical childs school at this point)

 

Do this:

 

sister:  Ds school is driving me crazy

you:    OH?  What is bothering you about it.

 

Make sure you have an open body image while doing this - lean a little towards her, no arms crossed, that sort of thing.  

 

Asserting your own boundaries is Ok if you like when she explodes  "do not yell at me.  If you have an issue with me, let me know and we can discuss it without yelling".

 

I will say that I still walk on eggshells a bit around my sister, even though her kids are 9 and 12.  Serious special needs do not go away.  The relationship is a bit less give and take than I would like (I do most of the giving, IMHO) but that is life, I guess.  She is my sister, I love her, it is what she needs.

 

 

 

 

 

 

 

 

 

 

 

 

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Old 01-28-2012, 12:10 PM
 
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Originally Posted by kathymuggle View Post

 

The special needs board at MDC has not been a safe place for me to vent (although there are times I could have used it). I love MDC (look at my post count!) and can talk in most forums about most things - but I cannot talk about how autism affects my extended family on this forum.  It is too much of a hot topic - and once again, who the heck am I to be complaining?   I have found real life friends and family to be better support.  

 


 

This board has most SN parents on it.  It is not the job of SN parents to take care of the other members of the family's feelings about the SN.  We have enough to deal with taking care of our SN kids and with taking care of ourselves. We're tapped out.  We haven't got what you need. 

 

I appreciate that OP needs support, but she's asking the wrong people for it. 

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Old 01-28-2012, 12:46 PM
 
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Originally Posted by RiverTam View Post

 

 


 

This board has most SN parents on it.  It is not the job of SN parents to take care of the other members of the family's feelings about the SN.  We have enough to deal with taking care of our SN kids and with taking care of ourselves. We're tapped out.  We haven't got what you need. 

 

I appreciate that OP needs support, but she's asking the wrong people for it. 

I know.  

 

As an extended family member of people with SN, I do need support on occasion, but I am not sure where to get it. I did take a look around the web to no avail, so if anyone has some links, I would appreciate it.  

 

I also think a subforum or thread specifically for extended family members and friends  of those with special needs might be useful.   I might start a thread and see where it goes. 

 

I did look at the user guidelines to see if this forum was specifically for parents dealing with special needs - and it did not say that.  It said "family."

 

I absolutely agree that it is not the job of SN parents to look after the needs of extended family members.  

 

This, however, is a board for SN issues.  You are not my sister.  I am not burdening you.  I do not expect you to care when I say it is isolating to grapple with the issues of special needs and have no one to talk to about it.  I took a look at a graph last night (I can find it if you like) that showed that about 1/2 of people reported worse relationships with family and friends as a result of dealing with special needs children.  Linda mentioned losing a few friends over it.  I suspect it is an issue - and having a safe place to talk about issues, what worked, etc could only be beneficial, and might benefit the special needs community as a whole.   It does not have to be here - but as far as I can tell there is little out there.

 


 

 

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Old 01-28-2012, 12:52 PM
 
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Originally Posted by kathymuggle View Post

If you do not think a frank conversation will work (or do not want to burden one with her now), I would adopt a conversation pattern where you reflect back what she says.  You can ask clarifying questions, or questions about her opinions, but you do not give your own opinion.  

 

Ex:

 

Do Not do this:

 

sister:   Ds school is driving me crazy!

you:   You could switch schools .

 

or this:

sister:  DS's school is driving me crazy

you:     I hear you!  My daughter school is as well (she probably does not want to hear about your issues with your neurotypical childs school at this point)

 

Do this:

 

sister:  Ds school is driving me crazy

you:    OH?  What is bothering you about it.

 

Make sure you have an open body image while doing this - lean a little towards her, no arms crossed, that sort of thing.  

 

Asserting your own boundaries is Ok if you like when she explodes  "do not yell at me.  If you have an issue with me, let me know and we can discuss it without yelling".

 

I will say that I still walk on eggshells a bit around my sister, even though her kids are 9 and 12.  Serious special needs do not go away.  The relationship is a bit less give and take than I would like (I do most of the giving, IMHO) but that is life, I guess.  She is my sister, I love her, it is what she needs.


I think the examples given here are relevant for dealing with anyone, not just the parent of a child with special needs.  I know I can't stand it when I start venting about something, like something completely unrelated to my son's autism, to a friend or my mom or my husband, and they try to automatically give me advice how to fix it rather than just letting me get it off my chest, or they chime in with their own story without really hearing me.  I'm sure I'm guilty of doing that at times, and I know no one is perfect, but nonetheless, it's irritating. 

 

So basically, I think the way you treat a parent of a child with SN is the way you should treat everyone.  I think the problem in the OP is simply that there is bad communication to begin with which is making things even more challenging now.  I don't think anyone should come away from this thread thinking they need to walk on eggshells around SN parents.  I know I'd be mortified if anyone around me felt that way. 

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Old 01-28-2012, 01:03 PM
 
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I did look at the user guidelines to see if this forum was specifically for parents dealing with special needs - and it did not say that.  It said "family."

 

I absolutely agree that it is not the job of SN parents to look after the needs of extended family members.  

 

This, however, is a board for SN issues.  You are not my sister.  I am not burdening you.  I do not expect you to care when I say it is isolating to grapple with the issues of special needs and have no one to talk to about it.  I took a look at a graph last night (I can find it if you like) that showed that about 1/2 of people reported worse relationships with family and friends as a result of dealing with special needs children.  Linda mentioned losing a few friends over it.  I suspect it is an issue - and having a safe place to talk about issues, what worked, etc could only be beneficial, and might benefit the special needs community as a whole.   It does not have to be here - but as far as I can tell there is little out there.

 


Yeah, but the name of the forum is "Special Needs Parenting."  And if you read further in the guidelines, it states "parenting the special needs child comes with many rewards and challenges that are unique to each family. This forum is a place to discuss these issues with like-minded members" and "please join us in supporting parents of special needs children as they work together to deal with everyday issues and parenting while practicing Natural Family Living." So yes, it's open to all members and anyone can post, but it is here for the support of parents. I think the problem with opening the discussion up for how hard it is to be an extended family member of a child with SN is that inevitably there will be a discussion of how hard it is to deal with the parents as we've already seen here which doesn't make for a really supportive environment.

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Old 01-28-2012, 01:11 PM
 
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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?  

 

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Old 01-28-2012, 01:17 PM
 
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Originally Posted by AbbyGrant View Post
  I think the problem in the OP is simply that there is bad communication to begin with which is making things even more challenging now.


yeahthat.gif

 

This issue seems to have just added another level of difficulty to an already...complex...relationship.

 


"It should be a rule in all prophylactic work that no harm should ever be unnecessarily inflicted on a healthy person (Sir Graham Wilson, The Hazards of Immunization, 1967)."
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Old 01-28-2012, 01:18 PM
 
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I did look at the user guidelines to see if this forum was specifically for parents dealing with special needs - and it did not say that.  It said "family."

 

Well, considering that the board is called "Special Needs Parenting" I would take

 

Quote:

 

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 shrug.gif.

 


"It should be a rule in all prophylactic work that no harm should ever be unnecessarily inflicted on a healthy person (Sir Graham Wilson, The Hazards of Immunization, 1967)."
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Old 01-28-2012, 01:20 PM
 
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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 lol.gif). I'd be glad to participate there. 

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Old 01-28-2012, 01:23 PM
 
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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 lol.gif). I'd be glad to participate there. 



Thanks!

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Old 01-28-2012, 01:29 PM
 
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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. orngtongue.gif


but everything has pros and cons  shrug.gif

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Old 01-28-2012, 01:58 PM
 
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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.  

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Old 01-28-2012, 05:52 PM
 
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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?

 

 

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Old 01-30-2012, 10:55 AM
 
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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...


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Old 01-30-2012, 11:09 AM
 
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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.  

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Old 01-31-2012, 04:01 PM
 
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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.

 


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Old 01-31-2012, 07:40 PM
 
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 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.

 

 


but everything has pros and cons  shrug.gif

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Old 01-31-2012, 08:14 PM
 
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Quote:
Originally Posted by FarmerBeth View Post


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.

 

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Old 02-01-2012, 01:03 PM
 
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OP, this post might be of help to you: http://parentingwithaspergers.blogspot.com/2012/01/support.html


 upsidedown.gif  Please see my Community Profile! energy.gif blogging.jpg about Asperger's Syndrome!

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Old 02-01-2012, 01:14 PM
 
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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.

 


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Old 02-01-2012, 01:32 PM
 
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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.


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Old 02-01-2012, 02:25 PM
 
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Quote:
Originally Posted by FarmerBeth View Post

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. redface.gif  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 -Peace.gif

 

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 goodvibes.gif

 

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Old 02-01-2012, 03:32 PM
 
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I didn't really get I was coming across that way.   Thanks for understanding.  And the "mojo".smile.gif


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Old 02-02-2012, 09:03 PM
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My first reaction when I saw this thread in the forum was, "Oh, crap, my sister found me online!"  lol.gif

 

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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