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Raising a child with a disability means making adjustments

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Dr. Marleen S. Williams hopes to convey a sense of hope to parents of children with disabilities.

As one of 17 presenters who will discuss a variety of family issues at Brigham Young University's Families Under Fire conference next week, she will speak about something she knows well: raising a child who has a disability.

Williams is an associate clinical professor in counseling psychology at BYU. She and her husband, Dr. Robert F. Williams, are the parents of nine children, one of whom is mentally challenged.

Parents of a child with a disability must first adjust to their situation, she said. "It's not just about learning to cope with the child's unique needs but also adjusting to the loss of a dream, the loss of expectations."

If your child is mentally challenged, for example, he won't be going to college. Your child may not grow up to be the neurosurgeon of your dreams, said Williams, but he can find a place in society.

Her daughter, for instance, works at the BYU cafeteria, has many friends, an active social life and helps in the nursery at her church.

Families must also make the necessary logistical adjustments to accommodate the child.

Take the family vacation. What you can do, how fast you can do it and the kinds of activities you plan may change to accommodate the child with the handicap.

Managing misbehavior is another subject Williams will discuss.

"Often a child with a disability will act out his concerns rather than talk about them," she said.

The child may feel inadequate. He sees that everyone around him can write his name, but he can't. So he throws his crayons on the floor or pokes the child next to him. "You have to learn to understand the child and the meaning of his misbehavior," she said.

Sometimes you'll have to figure out an alternative way to teach the child a skill. The

Williamses, for example, used music to teach their daughter how to speak.

Parents should remember to take care of themselves mentally, physically and spiritually, a concept Williams refers to as "self-care." If you allow yourself to reach exhaustion or feel like you always have to be sacrificing, you won't have anything left to give the child, she said.

"There's a fine line between being a martyr and making appropriate sacrifices," she said. Only the family can decide where that line is. "Important decisions cannot be made based on what other families are doing. I have to look at the unique needs of my own family in making decisions and not be vulnerable to the judgment of others outside the family."

Although raising a child with a disability brings many challenges, there are many rewards.

"Children learn to be respectful of diversity of ability; (they learn) that the world is not just for the gifted and talented; that love and relationships and purpose in life is not something that belongs just to those who perform well," said Williams. "Having a disabled person in our family took us to a very different level of understanding the value of each human being."

She also said it can raise a parent's self-esteem. "What seems impossible in the beginning, years later there's a certain self respect that comes from having done what you thought was impossible.

"Raising a child with a disability can become a meaningful and rewarding experience," she said. "My daughter has been my greatest teacher."

E-mail: kclayton@desnews.com