There has been some research interest in the effects of having a child with Down syndrome in the family, particularly for the siblings.  From this interest, some sibling support initiatives have taken bloom.  I would like to summarize some of the research findings in a practical way.

 A recent book* by Dr. Brian Skotko and Susan Levine summarized some pointers for parents based on extensive interviews with siblings:

• •    Explain Down syndrome as soon as possible and in a continuous dialogue rather than one big “talk”.  Be honest and provide information as it is requested.
• •    Support siblings during difficult moments when they might be embarrassed in public, especially in the pre-teen years.
• •    Allow siblings to express negative emotions when they feel them.  These are usually temporary and are normal to feel towards any sibling.
• •    Set behavior limits consistently across children.  The child with Down syndrome should not be allowed to “get away” with anything.
• •    Limit the amount of responsibility that siblings are given for looking after the family member with Down syndrome.  Siblings can be very helpful but should not be taken for granted. 
• •    Remember to recognize the accomplishments your other children make but do not put them in the position of having to compensate for their sibling with Down syndrome.
• •    Look for workshops and other supports for siblings and avail of them.

Powell and Ogle (1985) suggest these additional points:

• •    Schedule special time with the other siblings in the family.   Do not allow the child with Down syndrome to monopolize parental time and concern.
• •    Allow siblings to settle their own differences.
• •    Require the child with Down syndrome to do as much for him or her self as possible.
• •    Provide normal family activities as much as possible.
• •    Teach the siblings how to interact
• •    Use the help of professionals for siblings if required.

One of the most interesting points that came from this research is that the siblings felt that their parents worried too much about the child with Down syndrome and needed to “relax more.”  Isn’t that the truth?

The major disadvantages that the siblings identified in both studies is the parental and personal time constraints, relationships and socializing restricitions, parental emotions and the burden of helping.  The siblings did identify, however, that they did benefit in terms of their personality characteristics.

     Powell, T.H. and Ogle, P.A. (1985). Brothers and Sisters—A Special Part of Exceptional Families. Baltimore: Paul H. Brookes.
   *Skotko, B, & Levine, S. (2009.  Fasten Your Seatbelt:  A Crash Course on Down Syndrome for Brothers and Sisters.  Bethesda: Woodbine House


© Ann Haig Wheeler, DSC 2009

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