My younger brother is suffering from cerebral palsy, and I am with him for almost 15 hours a day, six days a week. Our mother is helping, but she has to work, so me and my brother are usually alone. I believe that we, as siblings, have to help him, but sometimes I am so embarrassed. Both because of his behavior and because of the quilt I feel when I react like I’m embarrassed. I would like to hear some of your thoughts. Thanks.
It certainly is hard situation for all of you! I work at the National Dissemination Center for Children With Disabilities, and I’ve heard a lot of such stories. As you said, siblings should be helping one another, but I do understand that we all have our own life projects and expectations. It is not rare occasion that siblings stay ‘helpers’ for the rest of they life, never to work on and for themselves, always worry about disabled person’s needs. We should find a way to satisfy both the needs of disabled person and his/her siblings. We in the Center are working mostly on consciousness of the people in the community, because it is much less stressful, embarrassing or hard when you’re surrounded with people who understand and support you (both as disabled person and as a sibling).