They may feel guilty for having less than charitable feelings about their sibling and family. All children should be given an age-appropriate explanation about the disease so that they will not make incorrect assumptions. Parents need to acknowledge that having a brother or sister with such a disease may produce all kinds of feelings. Acknowledging that living with a sibling with profound special needs I sometimes difficult and stressful reflects reality and sends a message to the children that they can feel free to talk about their feelings with their parents. There may also be guilt around care giving.
Adolescents struggle with their own wishes for independence.
Some may assume that they will not be able to leave home or go away to school because they have to help take care of their sibling. They need to know that their lives do not revolve around their siblings, and that they should be attentive to their own needs. At the same time, they need to know that in any family, members share some responsibility for each other and their household. While most children like to feel useful, the major burden for care giving should not fall onto their shoulders. These issues should be openly discussed in the family.