Articles

Down syndrome and Siblings

The birth of a child with a disability or chronic illness, or the discovery that a child has a disability, has a profound effect on a family. It is important because the nondisabled child's reactions to a sibling with a disability can affect the overall adjustment and development of self-esteem in both children.

Powell and Ogle (1985) present several strategies suggested by nondisabled siblings themselves for parents to consider in their interactions with their nondisabled children. These siblings suggest that parents should:

• Be open and honest
• Limit the caregiving responsibilities of siblings
• Use respite care and other supportive services
• Accept the disability
• Schedule special time with the nondisabled sibling
• Let siblings settle their own differences
• Welcome other children and friends into the home
• Praise all siblings
• Recognize that they are the most important, most powerful teachers of their children
• Listen to siblings
• Involve all siblings in family events and decisions
• Require the disabled child to do as much for himself or herself as possible
• Recognize each child's unique qualities and family contribution
• Recognize special stress times for siblings and plan to minimize negative effects
• Use professionals when indicated to help siblings
• Teach siblings to interact
• Provide opportunities for a normal family life and normal family activities
• Join sibling-related organizations

Children with special needs, disabilities, or chronic illness may often need more help and require more attention and planning from their parents and others in order to achieve their maximum independence. Brothers and sisters can give parents some of the extra help and support they need; the special relationship of brothers and sisters, disabled and nondisabled, is often lifelong. This special and unique bond among siblings can foster and encourage the positive growth of the entire family.

DOWN'S SYNDROME AND SIBLING LOVE

By GLENN COLLINS

Published: November 19, 1981

The New York Times

Before 1960, more than 80 percent of children with Down's syndrome were institutionalized, ''and the other 20 percent were hidden away,'' said Dr. Jessica G. Davis, a medical geneticist who is an associate professor of clinical pediatrics at Cornell University Medical College. ''Recently, close to 100 percent have been coming into communities.''

Down's syndrome, a genetic defect that causes mental retardation and may be associated with some physical and facial characteristics, has no known cure. It is not uncommon: One out of every 1,000 live births in America - some 3,000 a year - is a Down's syndrome child, regardless of racial, economic or regional differences.

Recently a national organization called the Sibling Network was formed to coordinate research and share information among educators, physicians, parents and social workers at Vanderbilt University in Nashville, Tenn.

''Traditionally, there was the tendency to hide these problems away, to shroud them in mystery,'' said Dr. Davis. ''Siblings were encouraged not to talk about it - and so often the siblings felt angry and isolated.''

Many new parents are shattered to learn that their child has Down's syndrome; it isn't easy for the siblings either. ''It can be very scary for the next closest child in the family,'' said Dr. Davis. ''Mother goes off to the hospital and comes back - and there's a new baby with a problem. Young children may even wonder: Is this my fault? Also, in many families, the child with Down's syndrome may get more attention than other children.''

''The attempt now is to bring Down's syndrome children into the family circle in a natural way,'' said Fredda Stimell, the executive director of the school at the Association for Children With Down's Syndrome. ''We try to encourage the siblings to talk and learn from one another.''

One of the problems that older siblings have is coping with the word ''retard,'' which is commonly used as a pejorative among children. ''With the other kids, you have to explain to them - that they're talking about your brother,'' said 12-year-old Todd Probeck of Wantaugh, L.I., whose 3-year-old brother, Danny, has Down's syndrome. ''I don't think lots of kids really know what they're saying.''

Down syndrome and other disabilities
Advice on how to support siblings

July 5, 2006

Although little research has been done, recent studies suggest that brothers and sisters of children with Down syndrome are affected more positively than negatively, developing kindness, empathy and a matured respect for diversity. An article in the August 15 issue of the American Journal of Medical Genetics (published online July 5) offers eight recommendations for parents on how best to support these siblings. Be open and honest, explaining Down syndrome as early as possible. Brothers and sisters often prefer to have not one big conversation, but a continuing dialogue as new questions and concerns emerge. If children shy away from bringing up the topic, parents can help by periodically asking if they have any questions. Providing information may prevent unnecessary confusion and worrying. Allow siblings to express negative feelings. Like siblings of any child, brothers and sisters of a child with Down syndrome will experience frustrations and negative emotions; parents should know these feelings are generally temporary and allow the space to express them. Recognize difficult moments that siblings may experience. Parents can help prepare brothers and sisters to handle embarrassing or upsetting situations, such as seeing people stare at or make fun of their sibling. They should honor a child's need to establish distance from their sibling with a disability when out in public, especially during the preteen years when the need to "fit in" peaks. Limit caregiving responsibilities. While these duties make siblings feel helpful and capable, most siblings want them to be limited. Siblings often comment that they don't always want to be available for babysitting. Parents should be encouraged to remember that siblings are children first, and not substitute parents. Limiting responsibilities will help avoid feelings of pressure, resentment and guilt. Recognize the uniqueness of each child in the family. Brothers and sisters are quick to point out that they, too, need attention and acknowledgement of their accomplishments. Encourage children to reach their full potential, but without feeling the need to "compensate" for their sibling with Down syndrome. Be fair. Siblings often mention that parents allow the child with Down syndrome to "get away with more," and say that limits for acceptable behavior should be set and applied consistently. Parents should also allow brothers and sisters to have their own friends and interests, separate from their siblings and without guilt. Take advantage of supports for siblings. Brothers and sisters are often relieved to talk to peers who share their experience, and to voice both positive and negative feelings. There are many books for children and teens about sibling and disability issues; the National Down Syndrome Congress has a list:www.ndsccenter.org/resources/bibliography06.pdf. Skotko and Levine provide lists of "frequently asked questions" that siblings may pose -- ranging from medical questions ("How long is their life expectancy?") to philosophical questions ("Why does my brother have Down syndrome?") to questions about dealing with difficult moments ("How do you deal with people who use the word 'retard'?"). "The brothers and sisters we've met experience both positive and negative feelings in their sibling relationships, but positive emotions usually outweigh the negative ones," says Skotko. "Many find camaraderie and helpful information in sibling support groups." Siblings Siblings are likely to have the longest relationship of anyone with their brother or sister with Down syndrome. Siblings frequently also show unique insight – they may, for example, have less difficulty than others in understanding their sibling’s speech, recognise an underlying cause of difficult behaviour or see potential where others have failed to recognise it.  Young people will tend to mirror the attitudes of the adults in the family, so the attitude of parents to the disability will be the most significant influence on the way in which a sibling views their brother or sister with Down syndrome. Other children will tend also to take their cue from the attitude shown by the siblings to their brother or sister with Down syndrome. Siblings provide the range of benefits for a child with Down syndrome that they can in any family – language and role model, childhood companion and later social coach and mentor. Siblings in turn gain widened perspective from the experience of having a brother or sister with Down syndrome. All sibling relationships go through different stages as children grow and many teenagers are likely to experience a phase in which their sibling causes them embarrassment – parents need to be careful to handle this sensitively and it usually passes with increases in maturity.