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But not enough to tell the truth; developmental needs of siblings.


"Sometimes," offered Jenifer, "when I've done something that I know my parents are gonna yell at me for, I tell them Randy did it. Like when I forgot to flush the toilet and Dad yelled 'who forgot to flush the toilet!' I told him Randy did it. Then I went into my brother's room and told him what I had done. I felt guilty."

"Yeah," agreed Nicole, "that's like the time I broke the cookie jar in the kitchen. When Mom started yelling, I told her Jason did it. I felt guilty, but not enough to tell the truth."

Jenifer is a 10-year-old girl who has a twin brother, Randy, with Down syndrome. Randy has few verbal skills and frequently creates situations that are embarrassing for his three siblings, who are close in age.

Nicole, also 10, has a three-year-old brother with Down syndrome. While Nicole's brother has not yet embarassed her through his behavior, Nicole finds it difficult to tell her friends and neighbors about his condition.

Nicole and Jenifer, along with four other children aged eight to twelve, had participated in a four-session workshop for siblings of children with special needs. The workshop was designed to help siblings express their feelings and concerns, and learn how to handle common, yet thorny situations. The children's parents participated in a separate group held concurrently.

The meetings covered material presented in the Sibshop Manual developed at the University of Washington, and in the book Living with a Brother or Sister with Special Needs. In particular, common conflict and problem situations that siblings might encounter were presented, and the children were asked how they would handle them. Time was also allotted to discuss disabling conditions, special education and simple behavior management principles.

The children expressed many feelings about their siblings with disabilities through role play, group discussion and sharing family stories. When asked to describe typical feelings, virtually all of the children listed embarrassment, pride and jealousy: embarrassment when they came into contact with the world outside the family, pride when their sibling learned something new, and jealousy when their parents spent a disproportionate amount of time with their sibling with a disability. Envy was also mentioned by some whenever a sibling with a disability had little or no homework, few household responsibilities and fewer expectations placed on them by the parents.

The children proved to be knowledgeable and aware of what it means to have a sibling with a disability, benefitting from having open and informed parents. Yet it became apparent that these bright and forthright kids had great difficulty translating knowledge into appropriate and effective action. Their reactions were often based more on the feelings aroused by a situation than on what they knew to be the best response.

One 10-year-old girl, for example, told how she was unable to control her temper when her brother waved his hands in front of her face, even though she could clearly state that ignoring him was the best response. Others knew how to explain to friends or strangers that their brother or sister was disabled, but confessed that their performance broke down when they became embarrassed or angered by the ignorance and insensitivity of others. And one eight-year-old girl explained away her brother's delayed development by telling people he has a hole in his heart, even though she knew she was not being completely honest in doing so.

This gap between the knowing and the doing presents an interesting challenge for non-disabled children and their parents. As the children in this group clearly articulated, they felt guilty whenever they failed to respond in the way they knew to be best. Their parents, in turn, often became frustrated when they saw their non-disabled children "falling short." Yet it would be easy and foolish for parents to vent anger at the non-disabled child, as this would only increase that child's sense of guilt, foster resentment toward the sibling with a disability, and deny them the support and understanding they need to become more assertive.

Children in the preteen years commonly lack the ability to assert themselves, having been trained most of their lives to respect authority and avoid conflict. Those parents who recognize and understand the implications of this developmental stage will be in a better position to help their children become more assertive.

While non-disabled children need to know how to handle certain situations, they also need understanding from adults who can provide a forum for discussing what goes wrong and how to behave differently. Workshops provide one such forum, but the best and most enduring forum is created by open, honest and caring parents.

What can parents do to serve the needs of all their children? While any answer must, ultimately, depend upon individual circumstances, here are some guidelines that can prove helpful: . Be sure that your expectations for your non-disabled child are realistic. It's easy to forget, sometimes, that they are children first, and we cannot expect them to handle difficult situations like little adults. For example, it would be unrealistic to expect a young child to be able to supervise, alone, a disruptive sibling while in public. . Let your child know that you also get upset sometimes and often wish you could have been more assertive in a particular situation. Sharing an account of your own shortcomings can ease the sense of shame and guilt that the non-disabled child might feel over some incident of his own. . Praise your child whenever she's done something of which you want to see more. Let her know specifically what it was that you liked, such as saying, "I liked the way you played with your brother today while I was fixing dinner." . Don't expect too much too soon. Progress often comes in short, sometimes halting steps. Neither should you be surprised by occasional setbacks, being sure to give corrections in a gentle, positive manner. . Keep the lines of communication open, paying attention to the feelings underlying what your child tells you. Let him know that his observations, concerns and suggestions are valued and worthy of discussion. . Remember that the non-disabled sibling will have occasional negative feelings toward the child with a disability and that these feelings are normal and best approached with understanding and not with shame or guilt. . Most importantly, show your child how you want him or her to behave. There is no substitute for a positive example, especially when it is coupled with the opportunity to practice appropriate behavior under the watchful eye of a warm, supportive parent. . Finally, help establish a sibling program in your community by encouraging organizations for the disabled, schools and early intervention programs to have a "sibling day" or to sponsor a sibling workshop. Parents can also establish informal sibling support groups through their own networks.

Having a child with a disability in the family is an opportunity for those living with that child to understand human differences in a way most people never get a chance to experience. Non-disabled siblings are in a position to teach others compassion and concern for those less fortunate. Furthermore, they have a chance to develop coping skills most children with siblings don't develop.

For that opportunity to be realized, however, these children need positive models and help from the adults in their lives if they are to learn to handle situations for which there are often no easy solutions. There will be many lapses between the "knowing" and the "doing," and the parent who understands this will be in a better position to help and will, ultimately, have competent and compassionate children.
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Author:Stavros, Helen; Boyd, Richard D.
Publication:The Exceptional Parent
Date:Apr 1, 1989
Previous Article:Eligibility for services for persons with specific learning disabilities.
Next Article:Ordinary families, special children: a systems approach to childhood disability.

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