Ive been lurking around this site since my first daughter, Eva was born. When my second daughter, Molly reached 6 mths old we realised that she wasnt meeting milestones & were given the dreaded "Global developmental delay" diagnosis.
At 12 months we recieved a diagnosis of Angelman Sydrome.
The six months of waiting were horrific & Im sure anyone who is either going through this or has been though it will agree.
You dont really feel comfortable in joining a special needs group or anything similar as you dont know if that is what the future will hold for you.
I promised my daughter on the long nights I sat & cried with her that I would do my best to make sure that there was some kind of support network for parents in the same boat.
We are writing a website & that is one of the main goals.
Obviuosly I will refer visitors to my site to this forum
My question of you guys is - if you have a diagnosis -
where did you go for help in that "not knowing" period??
If you have no diagnosis & are worried - what helps you? what do you think might help?
Amazingly enough a diagnosis (albiet an ordinary one!) did help - although you couldnt have told me that at the time! I nearly knocked out people that told me I would feel better with a diagnosis!!!!!
It puts a lump in my stomach to think of the pain I went through in those 6 mths, it was without a doubt the darkest time of my life!
Id love some help so set this resource up.
Meagan (Eva 3 & Molly 1 (Angelman Syndrome)