Research

It is important to learn everything you can about the condition your child has been diagnosed with. Knowledge is power. The more you know, the more able you will be to meet your child's needs and access services in the community. Self-education by the parent is essential in maximizing all the resources available. There are several excellent places you can start in your quest for information.

• Ask your child's Pediatrician or Specialist to explain the condition to you

• Research information regarding your child's condition. There are many excellent resources of medical information.

  *Note: Linda highly recommends the Hardin Library for the Health Sciences at the University of Iowa. You can find further contact information at the link below.

  http://www.lib.uiowa.edu/hardin/md

  Medical librarians are also an excellent resource to use when trying to figure out which Internet sites are good and which are not. Not all Internet web sites are accurate when it comes to medical information. Do not use school-type encyclopedias as a reliable medical resource. The Internet can be an invaluable tool but you need to be very, very cautious when you are utilizing the Internet for research. Current diagnostic information listed on AMA (American Medical Association) sites may not be included on other specialty sites appearing as legitimate medical resources. Always check your source! There are several excellent links listed below and on the National Resource Links list.

  For more research sources see Getting Started - The Educated Parent

• Contact your closest Children's Hospital. Ask for the Parent/Patient Educator. Some hospitals have their own education centers with employees assigned to assist parents/patients in researching any medical question they may have. They should also have a list of community supports available.
• Community supports. Contact a parent support group for Parents of Special Needs Children. Parents themselves can be a great educational resource and a great emotional support to new parents.