If your child is disabled or sick, this site is for you. The exact diagnosis doesn't matter because the problems, worries and fears covered here are common to all parents in your situation.
When I learnt my own two boys were incurably ill with cystic fibrosis, I searched in vain for a book to help me. I was frightened of my own emotions and I needed to know that it was all right to feel so bad. I needed a book written for parents rather than about them, a book which did not just list the problems I was having but also suggested ways I could improve matters. In the end, I gave up looking and wrote the book myself. It's now out of print, so I've put the text online for free in the hope that it may help you.
This site is about feelings and how to cope with them. It's about the help available and how to get the best from it. It's about the great taboos that no one talks about like death and failing to cope.
The ideas in here are parent size ones you can try yourself. They are based on people's practical experiences, not vague theory, but they are only suggestions not rules. Don't feel you must follow them all slavishly but instead use them as starting points for your own solutions.
Sadly the English language lacks one word to stand instead of "he or she" so I have chosen to use "he" for your child and "she" for the professionals. If necessary, please substitute the appropriate words as you read.