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June 02, 2007
SWAN - Syndromes Without A Name
It is plenty hard enough to care for a child with special needs when we know what's wrong. Knowing what's wrong tells us a little bit more about what to do, what might or might not work to help, gives us an extra tool for talking to schools, insurance companies, and other support resources. But when you don't have an official diagnosis, doesn't that mean nothing is wrong? Of course not! But it makes all those other aspects just that much more difficult.
We are glad to find out that there is an organization to provide support and help to parents of children with special needs whose special needs don't quite fit into a nice tidy package.
Syndromes Without A Name (SWAN):
USA: http://www.undiagnosed-usa.org/
UK: http://www.undiagnosed.org.uk/
Australia: http://www.swanaus.bigpondhosting.com/
"It is estimated that between 30 and 40% of special needs children do not have a definitive diagnosis."
Here are some more articles about the problems of lacking a diagnosis and what you can do.
Crow, Kristyn. Agonizing Journey: The Undiagnosed Child. 24 Jul 2006 09:12 PM Families.com: http://special-needs.families.com/blog/agnoizing-journey-the-undiagnosed-child
GM.TV: Undiagnosed illness: http://www.gm.tv/index.cfm?articleid=20188
Posted by pfa at June 2, 2007 11:26 AM