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Recommendations for supporting siblings

13 Jan 09
by dsc_staff
 
Recommendations for supporting siblings

Brian Skotko, M.D., M.P.P., a physician at Children’s Hospital Boston whose sister has Down syndrome, and Susan Levine, a social worker drew on 33 years’ combined experience of running sibling support groups to offer eight recommendations for parents on how best to support siblings when a child with Down syndrome is welcomed to the family unit. Although little research has been done, recent studies suggest that brothers and sisters of children with Down syndrome are affected more positively than negatively by their arrival, developing kindness, empathy and a matured respect for diversity.

1)    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.

2)    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.

3)    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.

 4)    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.

5)    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.

6)    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.

7)    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.

8)    Parents need support, too.  In workshops, many siblings comment that their parents should talk with other parents of children with Down syndrome, and learn to “relax more and worry less.” When parents are coping effectively, their children benefit, too.

These recommendations first appeared in the American Journal of Medical Genetics and are reproduced here with the kind permission of Brian Skotko (www.brianskotko.comThanks for your support Brian.

 

 

 

 

Can you recommend information to help parents prepare a Down Syndrome toddler for the birth of a new baby. I see a lot of information about preparing siblings FOR a Down's baby but have not found anything for the other way around.

Thanks
Debbie


Posted on February 4, 2010
by Debbie Miller
 
 

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