Disabilities

S.,
My heart goes out to you...as an Early Intervention worker, I know how hard these conditions can be for the whole family. Have you contacted Mass. Family Ties? (www.massfamilyties.org) They have a program called Parent to Parent that matches up moms and dads of children with similar disabilities to provide support for one another.
M.

hi i have a daughter with a condition called schizencephaly were only 3/4 of her brain developed. because of this she is also has hydrocephaly and has a shunt now placed. if you have any questions or you want to talk you can emaile me ____@____.com didnt expect my daughter to make it but she is now 6 will be 6 in october and is going in to the first grade.

I can post your question to a local group called the Framingham Special Education Parent Advisory Council and see if there are any parents that have children with the same disability. You can also email ____@____.com and they will forward your question. On the F-SEPAC site there are lists of local, MA, and national resources as well as local support groups. The address is www.F-SEPAC.org Good luck. S.

Hi S.,
I have a friend who started a website specialneedsma.com It is a helpful resource for families with children with special needs. Although it does not specifically address hydraencephaly, it may point you in the direction of more information and some support that you are looking for. Your Early intervention program should be able to provide some resources as well. You could also contact the Federation for Children with Special needs. I hope you find the support you are looking for. I wish you many smiles on your journey with your children!
M.

I cant really offer any insight to your daughters condition. I dont want to tell you i'm sorry, because the love of a mother to every child she has is such a strong force. I wish you well on your journey through the medical world. I hope you are able to find other moms to know what you're going thru, your not alone.

I'm sorry, this sounds difficult, but it is wonderful that she is doing better than expected. I don't have a child with this condition, but I thought this websitemight help:

http://hydranencephaly.com/index.html

If you follow their "for new families link" it looks like they have a yahoo group you can join to talk to other parents in the same situation, and through the "contact a family" link there are parents (none in MA unfortunately but in PA and NY) who have volunteered to talk to other parents about this condition.

Best wishes, I hope you find a good support network.

I agree with the others who suggest family support groups. Try a google search for hydranencephaly list serves. My daughter has cerebral palsy and is non- verbal. We belong to a c.p. parent list serve and an augmentative communication list serve. Each one has an average of 600 people world wide. There are parents and people who have the disability and professionals available 24 hours a day. Wonderful 'communities'!
Best of luck!!
Deb W.