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"The fundamental job of a toddler is to rule the universe." —Lawrence Kutner

TAKING CARE OF THE FAMILY OF DISABLED CHILDREN

Mykola Swarnyk, a parent from Lviv, Ukraine offers this advice to parents who have disabled children:

"Each of us has the right to show our feelings, including anger, frustration, and hurt. It is no secret that a child with a disability can be a source of frustration that can lead to feelings both of guilt and of being wronged by the world. Sometimes with this comes the laying of blame on a family member. However, we must also think about how this affects others in the family -- the husband or wife or mother or mother-in-law who is being made to take the brunt of our feelings of guilt.

"Often we extend great latitude to the child with the disability, while at the same time placing unrealistic demands on other members of the family such as an older child. It is here that we must be extremely careful, even though it may be hard to imagine that a healthy child could be jealous of a sibling with disabilities. If a parent is delivering sweets, toys and kisses only to the child with special needs and reserving the dustpan, mop, and dirty dishes for the sibling, it can lead to jealousy expressed covertly or through outright rebellion.

"This is true for other family members as well. The father, eldest child, or grandmother who is not excluded from the tired mother's attention, but allowed to be part of the family, will be more likely to help care for the child with a disability and share in the love of the family. Love is such a wondrous thing, because when it is divided, it does not become smaller but multiplies in volume."

This quote comes from Mykola Swarnyk's article, "What Every Child with a Disability Needs," which appeared in the Winter/Spring 2002 issue of Educating Children for Democracy, the journal of the International Step by Step Association.