would you be Ok with a thread or subforum on "special needs children - friends and extended family"

[kathymuggle]

Hello,

a quick introduction, as I rarely post here:

My name is Kathy.  I have 3 children who do not have special needs - there are touches of ADHD among my children, and my oldest has a huge case of dysgraphia - but still.  All is pretty good, nothing normal accommodations cannot help.

I have a sister who has 2 children (9 and 12, both boys) who have severe autism.  

I have had questions over the years and needed support with issues.  

I have not felt comfortable posting here, particularly the more philosophical or relationship issue stuff.   On practical advice you have rocked 

I do think advice might have helped me - a quick example:  In the early days of my nephews diagnosis, I gave my sister a lot of advice.  I was well meaning, but I now know I was in error.  If someone had been able to tell me "can it with the advice" it might have been helpful.  My sister, who absolutely is not on MDC, would have appreciate it!  By helping me you would have helped a fellow SN parent.  

I am fairly certain there is a lot of relationship strife in many extended families with SN issues - helping them helps the SN community as whole. My 

So - poll time!

here are the options  (if you can think of more, please add):

-a thread devoted to extended families and friends of SN kids/parents would be easy to set up, and gauge if there is any interest at all.

-a subforum may be harder to set up, might not be warranted if there is no interest, but has the bonus of being separate - nothing you are tempted to click on where you see stuff you are not really interested in seeing

-Nothing.  MDc should not host discussions on extended friends and  family members dealing with SN.

[Linda on the move]

I stated this on the other thread, but I'll repeat it here. I'm not a fan of a subforum because I think mothering.com is too big as it is. I think these kinds of threads could be placed in personal growth, and that it would be fine to post a request and link in this forum. Something along the lines of:

• I don't not have a SN child, but I have some question regarding a child in my extended family. I would really appreciate the input of moms of SN kids in my thread in person growth (link)

• Thank you.

The post on this board should be short and to the point, and not include the details/complications/opions of the poster. That way any debate stays off this board, and moms of special needs kids get a clear heads up before even going to the thread.

I do feel very protective of this forum, but I do see value in the other kids of threads as well.

[FarmerBeth]

With the above.  It gives the SN parents a chance to decide if they wish to help out in another forum, while leaving this forum a safe place to vent without pussy footing around about hurt feelings from people who aren't going through the same things.  I know I (and I'm sure most of the people) on this forum take the time to read through in depth posts in the special needs forum.  If I have the sort of day I really couldn't wrap my head around the extended family looking from the outside at special needs, I actually avoid the personal growth forums for just that reason.  I don't expect to find that, here, and if someone is asking for honest input of what a special needs parent would want for themselves in a given situation, they better be prepared for an honest answer if they are on a special needs forum.  Most people aren't looking for quite that level of honesty in that sort of situation, and feelings could be accidentally hurt.

[HarperRose]

Hmm. I've never had issue with seeing various threads from extended family. 

I think a subforum would be a good idea, though, so we have the option of visiting it or not. It might help the extended family not feel so alone. There would be support from others in their situation, like we have here. 

[AbbyGrant]

I agree that a subforum would be excessive.  

As far as an ongoing discussion thread on the SN Parenting board for friends and family, I think it could be problematic.  I think it would be tempting to venture into complaining about SN parents or discussing how draining it is to deal with them or whatever which would be completely inappropriate on a forum where the goal is to support SN parents.  When I come to this forum, I can see the first sentence of the last post to each thread, and I don't need to see that kind of thing here.  I do think it's fine however for friends or family to post specific questions here about SN or how to support the SN kids and parents in their lives as long as they are mindful of the forum guidelines.  

If people want to post about issues with SN parents in their lives or the struggles of being the extended family or close friend of a child with special needs or the like, I agree that perhaps Personal Growth might be the best place.  Because really what the issues often are in those cases are not specific to SN but rather relationships. I don't guess I'd have a problem with an ongoing thread there although I'd bet individual threads would be more effective.  

I'm not completely clear which answer in the poll would cover all that.  

[karne]

I haven't voted, but I want to say that this feels to me like one of the "safe" places on MDC, where judgement and criticism are kept to a minimum.  I think when you start along the path of friends and family, the dynamic shifts, and some of what feels unsafe or unsupportive can creep in.

FWIW, there is a huge range here of what we consider SN.  I have often felt that perhaps I haven't been "qualified" to post here in relation to what other folks are dealing with.  Yet this has been the place I've turned to again and again, if only to read and not post, knowing that support lies here.  It's safe because no one's fears are minimized, and no one's experience is treated as less than any one else's.  It's a refuge.

I too think Personal Growth is most appropriate.

ETA:  Kathy, not meaning at all to minimize your concerns or ideas-just sharing my thoughts.

[kathymuggle]

Originally Posted by AbbyGrant 

If people want to post about issues with SN parents in their lives or the struggles of being the extended family or close friend of a child with special needs or the like, I agree that perhaps Personal Growth might be the best place.  Because really what the issues often are in those cases are not specific to SN but rather relationships.

I'm not completely clear which answer in the poll would cover all that.  

That is the direction I am heading in.

I will probably post in personal growth as need be, but post a link on the SN forum letting people know a thread is over there if they want to read/contribute.  Hopefully people will be less likely to see stuff they do not want to see.

[kathymuggle]

Originally Posted by karne 

FWIW, there is a huge range here of what we consider SN.  I have often felt that perhaps I haven't been "qualified" to post here in relation to what other folks are dealing with. 

I have felt that, too ( dysgraphia and mild ADHD here).  I must say,though,  these feeling have come entirely from me - the SN board has always been great about accommodating a range of special needs.  

I am starting to wonder if the user guidelines shouldn't be more exact about how this place is exclusively for parents of special needs kids - and not really aunts, grandmas, neighbours, teachers…..and suggestions of where to post.  Sn affect more than the parents, they probably do need a place to talk, and guiding them to the correct one would be nice for everyone (both extended family and SN parents who do not want to read or deal with the other side).

something along the lines of:

:this forum is primarily for the parents of special needs children.  While we recognise extended family and friends often have issue relating to supporting SN families, the safety of this site is paramount and we will not host discussions that are critical of SN parents.  If you are having a personal issue with a SN parent, please post in personal growth or another appropriate forums for support, with a link here if appropriate".  

Some people, like me  need explicit instructions on such things!

Ps - Karne - no offense taken, at all!  I was legitimately trying to figure out where to post as an extended family member who sometimes struggles with what to do.  I have a gameplan now, so on a personal level, I am happy.    

Edited by kathymuggle - 1/30/12 at 7:54am

[AbbyGrant]

Originally Posted by kathymuggle 

I am starting to wonder if the user guidelines shouldn't be more exact about how this place is exclusively for parents of special needs kids - and not really aunts, grandmas, neighbours, teachers…..and suggestions of where to post.  Sn affect more than the parents, they probably do need a place to talk, and guiding them to the correct one would be nice for everyone (both extended family and SN parents who do not want to read or deal with the other side).

something along the lines of:

:this forum is primarily for the parents of special needs children.  While we recognise extended family and friends often have issue relating to supporting SN families, we encourage them to post in personal growth or another appropriate forums for support, with a link here if necessary".  Some people, like me  need explicit instructions on such things!

But the forum is not "exclusively for parents of special needs kids," so I definitely don't think non-parents should be automatically directed away. They just need to be mindful of where they are which is a place that's here to offer support to parents of children with special needs.

The guidelines state "the forum is open to all members and we encourage everyone to share and join in the discussions. Though in doing so, please be respectful of the forums purpose and the feelings of all our members....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."  In other words don't come here criticizing your SIL/cousin/neighbor/friend/whoever for the way they are dealing with their SN child or to discuss how you feel your SIL/cousin/neighbor/friend/whoever who has a child with SN is such a burden or whatever but feel free to participate in a respectful manner.  

I'm not saying that the guidelines couldn't be made more clear though, just clarifying that the forum is open to all just not to discuss everything.  

[kathymuggle]

Originally Posted by AbbyGrant 

But the forum is not "exclusively for parents of special needs kids," so I definitely don't think non-parents should be automatically directed away. They just need to be mindful of where they are which is a place that's here to offer support to parents of children with special needs.

The guidelines state "the forum is open to all members and we encourage everyone to share and join in the discussions. Though in doing so, please be respectful of the forums purpose and the feelings of all our members....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."  In other words don't come here criticizing your SIL/cousin/neighbor/friend/whoever for the way they are dealing with their SN child or to discuss how you feel your SIL/cousin/neighbor/friend/whoever who has a child with SN is such a burden or whatever but feel free to participate in a respectful manner.  

I'm not saying that the guidelines couldn't be made more clear though, just clarifying that the forum is open to all just not to discuss everything.  

italics mine.  I think they should lay out what is and isn't allowed.

 Where is the line between supporting and not supporting?  A common example:

I think something is wrong with my niece, but my brother refuses to see it! what do I do?

Is that a critisism?  In some ways it is - you think brother is dropping the ball, but in others ways you are coming from a place of love and want the best for your niece….

I think the guidelines are too fuzzy.  I don't think it is just me. I have seen well meaning but clueless posters (myself included - a few years ago….) treated harshly, for not knowing they crossed a somewhat invisible line.  I think clearer user guidelines could help prevent this. 

Abby Grant:  I am not in love with my earlier wording.  I do think anyone should be able to ask for concrete advice, such as "my nephew with autism is coming to visit - any tips?"  but more relationship/emotional issues stuff should perhaps be elsewhere, for everyones sake. I do think the current guidelines are too fuzzy.

Edited by kathymuggle - 1/30/12 at 8:01am

[ErinYay]

Originally Posted by kathymuggle 

 Where is the line between supporting and not supporting?  A common example:

I think something is wrong with my niece, but my brother refuses to see it! what do I do?

I think regardless of the intention of the OP, those kinds of questions don't go over so hot here. All roads lead to Rome, and I bet most, if not all of us SN parents have dealt with family members going back and forth between, "You need to be doing more!" and "You're imagining things, let him/her just be a kid already." 

SN parents can't win, and you're likely to see that frustration in replies to such posts. I personally get the feeling that some, not all, posters who "see something wrong" just want to be applauded, but they're not really going to get a very supportive response. 

[kathymuggle]

Originally Posted by ErinYay 

I think regardless of the intention of the OP, those kinds of questions don't go over so hot here. All roads lead to Rome, and I bet most, if not all of us SN parents have dealt with family members going back and forth between, "You need to be doing more!" and "You're imagining things, let him/her just be a kid already." 

Exactly!  Hence why I think the guidelines should be clearer, to direct people on what is and isn't appropriate for this forum.

[Piglet68]

A agree that a sub forum would be excessive. I see no reason why we shouldn't handle questions from friends and family members in this forum. The same user agreement rules apply. 

[beachcomber]

Agree that a sub-forum would be excessive.

Also agree that it's fine with me if people who don't have SN kids but are related to, friends with parents of, etc., and wanting to help should be welcome to post here.