The sibling syndrome

Being a sibling of a child with an intellectual disability can be life-defining. I know, because that’s what happened to my father, the oldest of five children — one of whom had a severe intellectual disability.

Dad grew up during the Depression and so he didn’t just have to deal with a disabled brother, he had to cope with poverty. His father was a traveling salesman and he was gone all the time. Dad’s mother relied on him as the responsible one.

Research

Not much research has been done on the impact of having a sibling with a disability. As physician Ranit Mishori, who has a brother with autism, points out in the Washington Post, most research has focused on the parents and how their lives are affected. Any research on siblings has been aimed at academic performance and mood disorders.

Experts who have worked with older siblings report that they feel an overwhelming sense of responsibility. Younger siblings, who have never known life without a disabled person in the family, seem to have less difficulty adjusting.

For my dad, having to take care of his brother robbed him of part of his childhood. When Uncle Melrose would have a tantrum, Dad would have to take him for a ride in the car to calm him down. When Dad would play baseball with his neighborhood friends, he would find a way for Melrose to participate and not disrupt the game.

Dad helped his brother dress and eat and he took him to the bathroom. I’m sure there were other routine tasks he helped with as well.

Guilt, anger and pain

When Dad graduated from high school, he moved out of the house and got a job. His parents, who had relied so heavily on him as a caretaker, found they couldn’t handle Uncle Melrose and they sent him to live in an institution.

I don’t think Dad ever got over the pain and anger of his parents’ decision. And I don’t think he ever got beyond feeling like the responsible one in every situation. He learned early on to suppress his feelings and he was never able to become emotionally present.

Being the older brother of a sibling with an intellectual disability was a two-edged dagger for him. It cut him two ways — one bad, the other good. It damaged him for life but also made him one of the most unselfish people I’ve ever known.