Re: Special Needs Resources/Info
I would have posted links sooner if I had noticed this thread earlier. I guess I have been too distracted by all the drama in my life. I will try to kick off with a few links that I have found helpful.
Oley Foundation - For Tube Feeding & Home IV feeds
Unique - They have the best tutorial I have seen on how to decode the karyotype the geneticist gives you. They also contain a fairly large database of development and health issues for children & adults with chromosome disorders.
Jablonski Database - The government no longer maintain the database but I have still been able to get assess the information contained in the archives via their search function. It details syndromes associated with mental disabilities and multiple congenital anomalies.
Parent - 2 - Parent - A group of forums devoted to special needs parenting.
Complex Child magazine - A great website for parent of children with various healthcare needs. They mainly specialize in complex medical needs but there are some more mild medical issues discussed.
Wright's Law - A good link to research advocacy for special needs in public education and Early Intervention.
I will try to post more links later. I have a ton of archived special needs links so it will have to be when I have a few hours to devote to sorting through everything and getting it posted with descriptions. The above links are the links that have been hands down the most helpful to me as a mom of a child with two rare genetic syndromes.
Last edited by mekat; 07-19-2011 at 12:12 PM.