My number one tip for anyone who has recently had a family member or loved one diagnosed with a disability or illness is to NOT LOOK UP ANYTHING ON THE INTERNET.
The internet is a huge resource with lots of information. However, just because it is on the internet doesn't mean that it is helpful or accurate. Often times worst case scenarios are put online and it can be terrifying.
When my son was born, he had a large birthmark on his leg. Besides what ideas doctors and nurses were throwing out, we had no idea what was really going on with him and were not prepared for anything to be wrong with our precious bundle of joy. Different diagnosis were being discussed but nothing was set in stone.
While I was still in the hospital, visitors were going home and googling those possible diagnosis and sending me links of articles and devastating information. It was more than I could handle and turns out, he didn't have any of the things they were sending to me! Since then, I've been very cautious about what information and medical terms I give to others.
If you are one who really wants to read up on something, ask your doctor or specialist for sites they recommend that have accurate and useful information. I have looked at a few sites, but overall have steered clear from the internet when it comes to information regarding my family members' disabilities. Many doctors have thanked and praised me for this and I am much happier for it!
If this tip was helpful, check out the other posts in this series: Our Story