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Do you have a local support group for your SN family?

post #1 of 7
Thread Starter 

I wrote a blog post about a local Autism group MoCAA - Moms Connect About Autism and I wondered if you guys had something similar for your kids?

post #2 of 7

No, but I wish I did. DS isn't formally diagnosed yet, but it's so confusing to navigate the waters of getting an SN diagnosis. Especially when you don't know how to spot what is normal and what isn't (I'm pretty sure I'm an aspie - and alot of his traits are alot like me).

 

I've been looking for a group in my area, but haven't found anything yet.

 

So glad you found a nice group. And love your new pic! So cute.

post #3 of 7
Thread Starter 

Oh, thanks! That's me & DS2, my sensory boy. :)

I found that finding local groups was a huge chore. And MoCAA has only been around about 2 years. So I had nothing for DS1's early years. It's incredibly frustrating.

post #4 of 7
No. I live in a very rural area. I have a friend that has a couple SN children as well, we get together every 1-2 months and just vent.
post #5 of 7

Not that I know of...but haven't made a big effort to find one as we just recently received a diagnosis and will be moving soon...Eventually I would like to find one/start one.  :)

post #6 of 7

No, my son's diagnosis is rare.  We don't fit in with the Autism crowd.  We don't fit in with the Down Syndrome crowd.  All the local special needs activities are aimed at the later two groups.  I have gone to the special needs PTA and have been frustrated because it all centers around the IEP and Autism.   If I wanted just IEP info I could go to any number of seminars without joining their PTA group.  Nothing they discuss is relevant to parenting a child with multiple disabilities and needs LPN level care at all times.  If it wasn't so difficult to get away I might have offered to break out a new sub-group in the PTA for parents of those with medical conditions and/or learning disabilities but paying a nurse to take care of my son while away is unaffordable and not covered by insurance.  Many other parents in my situation are in similar circumstances so I imagine that is why no one has bothered to form a group for us because no one can get away long enough from their child to do so.   Online is my only outlet.

post #7 of 7
Thread Starter 

 

Quote:
Originally Posted by mekat View Post

No, my son's diagnosis is rare.  We don't fit in with the Autism crowd.  We don't fit in with the Down Syndrome crowd.  All the local special needs activities are aimed at the later two groups.  I have gone to the special needs PTA and have been frustrated because it all centers around the IEP and Autism.   If I wanted just IEP info I could go to any number of seminars without joining their PTA group.  Nothing they discuss is relevant to parenting a child with multiple disabilities and needs LPN level care at all times.  If it wasn't so difficult to get away I might have offered to break out a new sub-group in the PTA for parents of those with medical conditions and/or learning disabilities but paying a nurse to take care of my son while away is unaffordable and not covered by insurance.  Many other parents in my situation are in similar circumstances so I imagine that is why no one has bothered to form a group for us because no one can get away long enough from their child to do so.   Online is my only outlet.

 

I found a neighbor, whose daughter is in the same class as mine, with a similar issue. Her son has Wolf Hirschhorn Syndrome. She came by the other day w/ her son and I'm glad she came by. To my knowledge, there's no support groups in our area for WHS. But there are PLENTY for ASCs.

We may have different issues, but everyone needs support, knowing that we're all on a similar journey - advocating and accepting our kids.

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