The main obstacle cited by families in Scorgie's study was the system. Parents complain that hospitals, support services and school systems are largely insensitive and inflexible in accommodating disabled children. You have to take on these giant systems that are so entrenched and rigid, and it takes so much time. Half your life is spent trying to convince people, reported one parent interviewed for Scorgie's study. Everyone specializes in this area and that area, and you have to run from this professional to that professional and no one was looking at my kid as my kid, says Burke, describing her experience shortly after Hannah's disability was diagnosed.
Some professionals are supportive.
But, Burke had to travel 350 miles to Toronto to find one. She was a leading opthamologist, but the reason she was great was that she took a real interest in Hannah as a person. For two years she phoned Hannah once a week about how things were going. For most parents, it is their peers other parents with disabled children who offer the best support. This type of networking enables parents to discover ways of dealing with the restrictions and negative attitudes they encounter.