“There is nothing more terrible than not being able to keep harm away from your child. And for a sibling, there is nothing more painful than watching your mother’s heart break because one of her children is wounded."
from: Special siblings: Growing up with someone with a disability, by M. McHugh
Growing up, a child with a disability needs more attention than most, so their siblings without a disability usually end up taking more responsibility, caring for their brother or sister instead of going out to play, doing their own dishes or laundry because their parents don't have time. A lot of feelings come into play, resentment, neglect, fear, confusion. At the same time, children may repress these feelings, not wanting to burden a parent still further. As an adult, other issues may surface. If the sibling with a disability has died, there may be additional feelings of guilt,
"How can I be upset because Sherrie got all of the attention? She died for God's sakes! What a horrible person I must be to feel neglectd that Mom never had time for me. "
If the parents have died, the non-disabled adult may need to take on the role as caregiver for their sibling, which can cause both resentment and worry. McHugh says,
"Having a sibling with a disability doesn’t mean that we stopped living our lives or that we started living entirely new lives. We live different lives. And that’s what people have to understand. We have to make different choices than we would have if we hadn’t had a sibling with a disability.”
While McHugh makes a good point that having a brother or sister with a disability is not the tragedy some outside the family may perceive, we need to acknowledge the fact that there often are significant obstacles.
For all of the stories we have heard about "My brother/ sister made my life a better person" we have heard an equal number about concerns for siblings' safety or care in group homes, concerns that taking care of an adult brother or sister takes away time from one's own children, just like taking care of the same brother or sister took their parents' time away from them as children. Brothers who terrified their younger siblings with violent behavior when they were children are now being arrested or kicked out of facilities for the same behaviors.
By your thirties or forties, you want to get on with your own life. Some people just move away. Others stay close to home but try to keep some separation from their parents and siblings. Still others choose to be very involved as an adult. No matter what choices you make, there are resources to help.
Sibling Resources