Friday, October 14, 2011

Factoid Friday: Perceptions of Down Syndrome

Today I would like to present a series of recent studies about Down syndrome that focus on the overall impact that it has on the family and the well being of individual family members (including the person with DS themselves). The information in each of these studies was gathered with new or expecting parents of a child with Down syndrome in mind.

The first study asked families how they felt about their child with Down syndrome. 
  • 99% stated they loved their son or daughter
  • 97% stated they were proud of their son or daughter
  • 95% stated that their other children (without DS) had a good relation with the siblings with DS
  • 79% stated that they felt their lives were made more positive by their son or daughter
  • 5% stated they felt embarassed by their child
  • 4% regretted having their son or daughter
"The overwhelming majority of parents surveyed report that they are happy with their decision to have their child with DS and indicate that their sons and daughters are great sources of love and pride." - Having a son or daughter with Down syndrome: Perspectives from mothers and fathers., Skotko BG, Levine SP, Goldstein R., © 2011 Wiley-Liss, Inc

The second asked siblings of those with Down Sydrome how they viewed and felt about their brother or sister.
  • 96% stated they were affectionate toward their brother or sister with DS
  • 94% of older siblings were proud of their younger siblings with DS
  • >90% planned to remain involved in the lives of their siblings with DS as they became adults
  • 88% of older siblings felt that they were better people because of their younger sibling with DS
  • <10% felt embarrassed by their brother or sister
  • <5% wished to trade their younger sibling for another without DS
"The vast majority of brothers and sisters describe their relationship with their sibling with DS as positive and enhancing" - Having a brother or sister with Down syndrome: Perspectives from siblings., Skotko BG, Levine SP, Goldstein R., © 2011 Wiley-Liss, Inc

The third study asked people with Down syndrome (that were 12 or older) questions regarding their self-perception. 
  • 99% expressed love for their families
  • 99% stated they were happy with their lives
  • 97% liked who they are
  • 97% liked their siblings
  • 96% liked how they look
  • 86% felt they could make friends easily*
  • A small percentage expressed sadness about their life.
(*Many of those who felt they could not make friends easily lived in rural areas where they were isolated)

"In our qualitative analysis, people with DS encouraged parents to love their babies with DS, mentioning that their own lives were good. They further encouraged healthcare professionals to value them, emphasizing that they share similar hopes and dreams as people without DS. Overall, the overwhelming majority of people with DS surveyed indicate they live happy and fulfilling lives." - Self-perceptions from people with Down syndrome., Skotko BG, Levine SP, Goldstein R., © 2011 Wiley-Liss, Inc
 ...And that's the facts, Jack.  Happy Friday!


  1. are there any data about children who have an older sibling with DS?

    We had our firstborn daughter with DS and the DS was a surprise. :( It must be unusual to have your FIRST child have DS.

    I can't find any data or testimonies from other people in a similar situation and somehow that makes it even more scary and disheartening because I have no firsthand understanding of even NORMAL child development, let alone one with special needs.

    1. It's not all that unusual at all. I know several prominent blogging families that either had a child with DS first, or in the middle of the sib line. In fact, I believe this data was inclusive, that is incorporated data regardless of where the children fell in sibling order.

      I'll keep my eye open for specific studies for you.


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