Before You Look for Information on Hydranencephaly
Sorting through the wealth of online information on hydranencephaly can be a daunting task, and there's a risk of finding material that is out of date and overly discouraging. Start with this recommended list of resources to find the information you need to understand and help your child.
On this Parenting Special Needs site
There are lots of general articles on this site that will be of interest to parents of children with hydranencephaly, but these more specific articles are a good place to start:
- What Is Hydranencephaly?
- First Five Things to Do After Your Child Is Diagnosed With Hydranencephaly
- Readers' Choice Award Finalist: Global Hydranencephaly Foundation Family-to-Family Resource Network
Global Hydranencephaly Foundation
The Global Hydranencephaly Foundation describes itself as "a family driven nonprofit organization dedicated to providing families faced with a diagnosis of hydranencephaly, the opportunity to help their child live the quality of life he or she deserves." Start with the following pages on the foundation's site and related resources:
- About Hydranencephaly
- New Families Welcome Page
- Our Kids
- Family-to-Family Resource Network on Facebook
- Journey of the Bees
Rays of Sunshine
Rays of Sunshine, the International Hydranencephaly Website and Support Group, is "a team dedicated to helping families, friends and medical professionals deal with the joys and difficulties of raising a child with Hydranencephaly. We offer not only educational materials but the important human side of Hydranencephaly." Start with the following pages on the Rays of Sunshine site and related resources:
- Hydranencephaly Information
- For New Families
- Our Rays of Sunshine
- Rays of Sunshine Hydranencephaly Information and Support on Facebook
- Yahoo Group
School Issues
I asked Alicia Harper, founder and president of the Global Hydranencephaly Foundation, what parents should let teachers know about students with hydranencephaly, and she wrote, "Children with hydranencephaly are like typically developing children, they are unique in their level of learning and limitations. Keeping a close working relationship with the parents and other care providers is important to the success of the student."
?Resources that may be worth sharing with teachers include:
Source...