In addition, the genetic information and ideas for experimental treatment are changing rapidly. Information that is valid today may change tomorrow. It is important for parents and professionals to stay current. Parents should be aware that their children may be depressed about their decreasing vision and that it is better to talk about these feelings and not ignore them. Parents should also be aware that many children and adolescents with Usher syndrome feel responsible for parental grief and pain even though this may not seem logical to the parent.
Parents can encourage children to express their feelings.
It helps to assure the child that, although parents may be concerned or even upset, the child did not cause this to happen. Parents, however, cannot and should not share all their feelings and concerns with the child. Parent and child can both be worried about the same issue, but boundaries must be maintained. If the student is depressed, the parents should listen and offer help. If any thoughts or attempts of suicide surface, parents should seek professional help from a counselor who knows about deaf-blindness.