Often other parents are the most authoritative source of information on parenting a child with disability. You may find it helpful to talk to others who have faced some of the same challenges along the way.
Parent2Parent offers a matching service to connect you to a trained volunteer support parent who has a child with a similar condition or has been in a similar situation to you.
Alternatively you may want to speak to someone from one of the following organisations who can share their experiences of caring for a child with a disability. Many of these groups have been set up by parents, for parents.
The New Zealand Organisation for Rare Disorders also have a comprehensive list of support groups for parents of children with rare and common disorders which you can search alphabetically.