Is there a way that parents of kids with the same issues connect?

[OrganicAnn]

I'm not really savvy about all the features, but are there groups for special issues?   My DD has NVLD aka NLD or Visual Spatial Deficit.  

 

Anyway, I know I can ask questions on this forum and get responses from others with similar issues, but didn't know if there is some other way to connect.  

 

My DD is having issues that from what I'm reading is not typical of NVLD and was thinking it would be so nice to chat with others about it.

 

 

 

 

[PeterPan]

Yahoo groups.  And yes, once you have a girl with a less common problem that's even less common in girls, you're going to struggle to find someone to chat with who has totally btdt.  The boy presentation might be very different from girls.  I remember being very hurt because someone implied that their awesome handling of boy xyz label ought to inform me how to handle my girl.  I finally decided that deep in my soul I have to decide we're fine, we're on the right path, she's going to be fine, everything is fine, and just suck up and not let comments and doubts destabilize me.  So if reading a certain place or talking to certain people destabilizes you, AXE them.  

 

As for finding actual friends or comrades, pray.  I've got a person I correspond with who's dc doesn't have the same label, but at least it's the same gender and similar IQs.  The labels don't have to be the same for the person to get it, because a lot of these kids have more brain similarities than differences, in spite of the differences in labels.  It's more a matter of degrees, what is most severe, etc.  So if you can read across labels and look at gender, look at how they present, maybe you'll find similarities and someone to chat with.  

[mommymonster]

Facebook. I am amazed and heartened by the variety of groups that have sprung up on Facebook (specifically related to medical and learning issues; some of the groups are crazy, but that's their thing). And really, if you don't find something that suits you, start a group and grow your own community. I did a quick search on NVLD on Facebook and saw a group. But... if you are looking for one for females specifically, I didn't see anything. You could very easily start one, though. It isn't hard to start groups on Facebook. 

[Heathermomster]

WTM has an NLD group. Check them out.

 

I meet periodically with local mothers of dyslexics, like once every 6 weeks. Socially, the kids love being together; however, my son, our approach to learning, and his achievement are very different. It can be difficult to find the right niche sometimes.

[OrganicAnn]

Thanks!

[OneStepAtATime]

Heathermomster, ohElizabeth and others on this site have been so helpful to me, even though things didn't always match exactly.  They are respectful, give me insight into their own situations and provide much-needed suggestions, support and understanding.  The main thing is that almost everyone here is understanding and caring, no matter what your issue.  If you need more specific feedback from someone with your specific situation, then it may be harder to come by since even within the same diagnosis, kids are all different.  Both of my kids have dyslexia, but are VERY different in their strengths and weaknesses.  Even though they have the same diagnosis, I frequently have to modify my teaching style dramatically between them.

 

 I agree that you might try starting your own group or doing a search on Yahoo or Google for other groups to seek out.  I cannot really recommend Facebook personally, although I know that others have had great success there.   I have had an aversion to Facebook since colleges and employers check Facebook for information and info stays in cyberspace forever.  Information on other sites stays around forever, too (just found a comment I made back in 1998 on a site I had forgotten I even accessed), but Facebook is more common for them to search.  Never know how a stranger may interpret what is said on Facebook.  Also, I have seen some people get really rude and snarky on Facebook and friends have had to cancel accounts to end the negativity.

 

I have not found a support group locally and the area I live in is extremely behind the times with regards to any learning issue, so most profession evaluators, parents, teachers, neighbors, etc. have no real clue about our issues, even if their own child may have the same issues or their job is to tutor or evaluate children with this issue.  Some still believe that dyslexia doesn't really exist.  It was a diagnosis created to excuse lazy children (irregardless of all the brain research and scientific studies to the contrary).  I am considering starting a local support group, and making an effort to improve the understanding of both professionals and parents facing the issues we are facing, but have been a little intimidated by how much work may need to go into it initially since I homeschool AND run a business and usually operate as a single parent since my husband is frequently out of town....I still would like to, though.   You might consider it, too.  

 

You might also try creating a blog, or checking with your local homeschool co-op, if there is one, to see if they would allow you to start a support group for special learning issue families.  Even if the families that initially join don't have your specific situation, in networking you may find that they know someone who does.  While seeking out those with more specific issues closer to your own,  you will also be forming a supportive local community of parents who may not have exactly the same issues, but who can understand and give each other some emotional and perhaps physical support.  In time, others may join that also have a similar situation.