Get organised with other parents
As parents of children with SB/H (Spina Bifida/Hydrocephalus), there is a lot of information and skills to learn from each other, in order to improve our children’s health in particular, their life in general as well as the situation of our families. Therefore, meeting each other at regular times will enable you to share your knowledge and day to day experiences, and to get strength from each others’ successes. (Young) Adults with SB/H can also learn from each other and can have an important input towards parents of younger children. From the experience and expertise the group can advocate for their rights and care towards care givers, schools, local and national authorities.
Here are 2 documents to help you get started:
Source: International Federation for Spina Bifida and Hydrocephalus in Brussels, Belgium
Prepare for a doctor’s visit
To help parents getting informed well during a doctor’s visit, it may be usefull for parents to write down the questions they have in a document like the Doctor Vists Sheet (from bravekids.org) in between the visits.