Support group for parents of SN children
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lionjill
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| Hi there, we are looking for recommendations for support groups of parents with special needs children. Our son has arthrogryposis (contractures of joints) and we are still in the process of diagnosing the cause. It would be wonderful to meet with other parents who have similar experiences. We are right now in Alexandria Virginia area, but anticipate moving to Belle View within the year. Any suggestions? Thank you in advance |
Anonymous
| Call Jill's House. http://jillshouse.org/ |
Anonymous
|
Have you looked into NIH and associated organizations yet?
https://rarediseases.info.nih.gov/gard/777/arthrogryposis-multiplex-congenita/resources/5 |
lionjill
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|
I didn't know about jill's house-thank you so much for that resource!
I haven't checked out the NIH website yet, didn't even occur to me that they would have support group information, so thank you for suggesting that! |
Anonymous
Jill's House is a great resource, but I'm pretty sure that their mission is specifically targeting kids with Intellectual and Developmental Disability. Arthrogryphosis wouldn't qualify. How old is your little one? Lollipop Kids is one group that provides parent support, among other things, but it's on the MD side. |
Anonymous
I think Jill's House might take that on. http://jillshouse.org/who-how-why-we-serve/. In any event, call Jill's house and talk to the most senior supervisor and ask. If the answer is no, they will know where to send you. If they don't know, they will find out. It's really a Godsend for a lot of parents and defnitely the best place to start. |