As a person who is personally affected by disabilities and having gone through some challenging times both past and recently. There are somethings that i found that helps. One is to become the expert in your condition. It helps those who are working with you to enable you to have the best quality of life and care. It is not an easy journey but it certainly benefits those who need the care and help. I have campaigned and supported various charities to enable me to become an expert in myself and my family. I could not have done it without me partner, family and friends who have also become experts. By doing this we have enable our son to have the best quality of life and independence that he needs.
The other thing is to keep positive and keep smiling.