On parenting a child with Down syndrome

badly-wrapped-giftOctober is winding down and with it, National Down Syndrome Awareness Month. I wanted to share two studies on a key concern of expectant parents when they find out their child has Down syndrome.

Studies of families who have chosen not to continue a pregnancy following a prenatal diagnosis for Down syndrome are scant. But, the few that have been done report a top concern of expectant mothers is the effect raising a child with Down syndrome will have on their marriage. This same concern is shared by those who choose to continue their pregnancy. I think expectant parents would be surprised that the published research suggests that more likely than not, the effect will be positive.

In a group of landmark surveys of parents, siblings, and individuals with Down syndrome, Dr. Brian Skotko, Susan Levine, and Dr. Richard Goldstein reported findings that counter much of the negative presumptions about having a child with Down syndrome.

From the survey of over 2,000 parents:

  • 99% said they love their son or daughter;
  • 97% were proud of their child with Down syndrome;
  • 79% felt they had a more positive outlook on life because of their child with Down syndrome.

I doubt all parents would hit as high of a response rate regarding their other children for the first two findings. But, it’s the third that I think expectant parents would be most surprised by.

It’s not surprising that parents love their children or are proud of them. But, given the emphasis on the disability associated with Down syndrome, most would not expect that four-out-of-five parents would report having a more positive outlook on life because of their child with Down syndrome. That’s an outlook that is difficult to envision when first receiving the diagnosis.

Another study reported a similar unexpected finding.

In 2007, a study was published on three groups of marriages in the state of Tennessee: those raising a child with Down syndrome, those raising a child with a disability, and all other marriages. They found that not only did those couples raising a child with Down syndrome have a lower divorce rate as compared to couples raising a child with another disability, but that the divorce rate was lower as compared to all other marriages. Meaning, couples raising a child with Down syndrome experienced divorce less likely than couples who were not raising a child with Down syndrome.

This, too, is a research result that I think many would find unexpected and one that is difficult to envision when receiving a diagnosis. The immediate thoughts are about the challenges of raising a child with Down syndrome, which leads to the concern that those challenges will put a strain on a marriage. The challenges do exert a strain–as any challenges do. But, in the end, the studies show that parents have a better outlook on life for having raised a child with Down syndrome and that they divorce at a lower rate than those couples not raising a child with Down syndrome.

But, will expectant mothers be told this when they receive a prenatal test result and wonder what effect having a child will have on their marriage?

Trackbacks

  1. […] with the responses from parents, I doubt you would get this high of a rating if you polled siblings’ feelings about their […]

  2. […] not mean the need to raise awareness has ended. This is the third in a series of posts about how parents feel about their child with Down syndrome, how siblings feel about their brother or sister, and now, […]

  3. […] research by Dr. Brian Skotko and his team found that 99% of over 2,000 parents surveyed across the United […]

  4. […] To respond to his secondary argument (that the parents are bringing a burden on themselves), here is the science: […]

  5. […] life expectancies, greater inclusion in the community, and more fulfilling lives. Further, in a companion study to the one referenced above, parents of children with Down syndrome were surveyed about their […]

  6. […] on a family. The new study is the result of a reevaluation of the surveys his team conducted of parents, siblings, and individuals with Down syndrome, themselves. Here are the crib notes taken from a […]

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