What are some of the challenges faced by children with siblings with disabilities? What advice do you have for them?

Children who grow up with a brother or sister with a disability learn early that life is unfair: many of their activities will be disrupted by their siblings; they have to learn that often the child with the disability must come first; they must face the fact that not everyone will want to be their friend because of their siblings with disabilities; they must learn to accept the fact that people will often stare at their brothers and sisters when they make noises or are conspicuous in public; and they must accept the fact that the family has to spend money on the care of the child with the disability that can affect the family's ability to pay for camp or vacations or even college.

My advice for them is all these things are hard lessons to learn, but they make you strong enough to deal with anything life presents you with when you are an adult. This is no small thing. It also makes you compassionate and kind to every human being you meet, a good problem solver, and tolerant of religious, racial, and other differences. It often makes you an achiever who works to make the world a better place. In short, you will probably be the kind of person other people want as a friend. Not bad!

How did your relationship with Jack and your role in the family change as you entered adulthood?

I became involved with my own family, which included a daughter with diabetes who became blind, had a kidney transplant, a leg amputated, and died of a heart attack, and there wasn't much time or energy left over for Jack. My parents put him in a home for adults with mental retardation when he was 37, and I pretty much pushed him to the back of my mind. It wasn't until our parents died that Jack became my responsibility, and I'm still learning to love him and make him a part of my life. He is very sweet and dear and funny and I'm sorry I missed all those years with him.

What can parents do to foster good relationships?

They can try to spend more time alone with their typically developing children. They can arm them with information about their siblings: what their disability is called, what they can and cannot do, and what is planned for their future. They should feel free to praise the child without disabilities even if the sibling with disabilities is present. They should be careful not to expect babysitting and other chores from the typical sibling without regard for his or her own plans and social life. They should be careful to say "please" and "thank you" when the typical sibling helps out.

Mary McHugh is the author of the book Special siblings: Growing up with someone with a disablity.

Copyright (c) 2002 Paul H. Brookes Publishing Co. All Rights Reserved.