Informing Your Son

When the boys get older (from age 7), they will become less egocentric and are more capable of thinking about their future. They can now think about their later lives. It is not until this turning point that they begin to accept their disease and its disabilities. As the boys get older, occasional short talks can help them to talk about the different aspects of their disease.

Always be honest, but do not talk too much: provide the boy merely with the information he asks for. Keep in mind that children do not ask more than they are capable of coping with.
Reassure him. You can do this by telling him, for example: “You will get anything you need, and we know smart doctors who will do everything they can to help us”.
Try to let him do the same as other children as much as possible. Let him play outside, just like other children. To avoid muscle damage it is important to use lighter materials and tools.
Be sure that the boy understands that his disease is not his fault: he is not to blame!
Anger, grief and other emotions can emerge during such talks (see box 21). This is completely normal, so do not try to avoid it. Instead show understanding and be a coach of the boy’s emotions.
For as long as possible, let him do as much as he can by himself. It will give him a feeling of independence and self-esteem.
Do not talk about his future if he does not ask about it. If he does ask, do not avoid the subject and always be honest. But never shut the door on new possibilities by saying, for example: “There are many doctors experimenting and searching for a cure, who knows what will be possible in a few years?"