How does Down syndrome affect the Sibling?

Expectant parents look forward to the birth of a healthy baby. When the diagnosis of Down syndrome is made questions are often asked about the effects of this on the family and particularly the other children in the family.

In the past it was assumed that the effects of having a child with Down syndrome in the family were negative. Since the 1970’s and 1980’s children are more likely to be brought up in the family home and attend mainstream education. In an Irish study Egan identified that 95% of all Irish children with Down syndrome had at least one sibling and the most commonly occurring number of children in the family was three. She suggested that further investigation may provide important insights into the role brothers and sisters play in each other’s lives (2000.p.138).

Cliff Cunningham and his colleagues in the UK carried out longitudinal studies on families and much of what we know today comes from these studies. He reported that there was no evidence that having a child with Down syndrome in the family automatically produces ill effects. Most families accept the challenge of raising a child with this condition and report it as being rewarding and strengthening.

Different Ages = Different Reactions

    • Under the age of three children are unlikely to understand the concept of different but will be sensitive to stress or tension in the family and may need explanations.
    • From the age of four, siblings may question why their brother or sister cannot do things like they can.
    • Six or seven year olds may think that an intellectual disability is like an illness from which you can recover.
    • From the age of eight siblings may begin to make comparisons with their friends and their awareness of their own situation grows.

However, as the majority of children believe that the family they grow up in is normal they may be unable to compare their situation with a family without a child with an intellectual disability.

Siblings can feel anxious if they don’t know what future role is expected of them. With the increasing range of options for people with Down syndrome to lead independent lives, there is less likelihood of making the sibling responsible for the long term care of a family member (2006).

Communication is Key

Since the 1990’s there has been increased focus on the experience of siblings as well as parents. The sibling relationship is a complex one regardless of the presence of Down syndrome. Meyer and Vadasy (2000) found that just like their parents, children need information about the disability in order to alleviate worries that they didn’t cause it or they might catch it. Porter and McKenzie agree with other writers about the need of siblings for information. They suggest that siblings experience similar negative feelings as their parents. Talking about their feelings and negative emotions and resentment helps siblings achieve a greater understanding. It can also give them skills to help them deal with conflicts that may arise because of their sibling’s disability. They can receive permission to pursue their own growth and have their needs met. The sibling relationship can grow stronger when they accept their negative feelings and have the capability to be the most enduring of all relationships. In any family sibling relationships are complex with mixed emotions but they have the potential to influence positively the lives of siblings with and without disability (2000).

(May Gannon, 2008)

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