Tuesday, June 08, 2010

I came across this today

And I wanted to share it I love reading about actual "studies" done about our kids that are often left out of the studies... you know... the typical ones?

Down Syndrome, Autism, and the Impact on Families

Read more: http://blog.beliefnet.com/thinplaces/2010/06/down-syndrome-autism-and-the-impact-on-families.html#ixzz0qGRW54GI

Our son William is a sensitive child. Lights, noises, textures. He responds immediately and intensely. So on Saturday morning, when my mother inadvertently opened a picture book that included a light and a buzzing sound, William wailed. And wailed. And wailed.

He was still wailing, in my arms, when Penny came into the room. She had been reading on her own, but the sound of her brother crying brought her downstairs. She hugged him and said, "It's okay, William. Don't cry. I'll keep you safe."

For years, it has been assumed that having a sibling or a child with a disability has a negative impact on the family. Studies in the 1970's and 1980's claimed that siblings of children with Down syndrome had more behavioral problems than their peers. And for years, families with children on the autism spectrum have been told that they have an 80% likelihood of divorcing.

Turns out they're wrong. On both accounts.

Dr. Brian Skotko and Susan Levine published a paper in the American Journal of Medical Genetics after studying over 3,000 siblings of individuals with Down syndrome. They concluded, "having a sibling with Down Syndrome is a privileged experience. The individuals we have encountered experienced both positive and negative feelings in their sibling relationships, but the positive emotions most often outweighed the negative ones. When they are older, most brothers and sisters describe their life's journey as one filled with rich meaning and pride."

As for the autism statistics, a recent study debunked the 80% divorce statistic, and demonstrated instead that 64% of children with autism remain with both parents throughout their lives. 65% of typically-developing children remain with both parents. Just in case it isn't already clear: there's no difference.

In both cases, parents and siblings readily admit that having a family member with a disability is challenging. Skotko and Levine list some of the questions asked by siblings about Down syndrome, including "How long is their life expectancy? Can people with DS have normal jobs? Will she be different? Why does my sister make weird noises?" And parents interviewed for the study on autism also attest to the challenges they face.

Apparently, in the past, medical professionals and the public in general have assumed that challenges lead to conflict and negative relationships. But these studies demonstrate that challenges can lead to compassion. In the case of the siblings with Down syndrome, they reported greater empathy, less conflict, and more warmth in their relationships than those of families with typically-developing siblings.

I've long suspected that Penny and William will be great blessings to one another. She already looks for ways to take care of him--running to get his giraffe and blankie when he cries, holding his hand in the stroller, yelling at him when she thinks he's doing something dangerous. He returns the favor, particularly when it comes to food. Whenever he requests something of me, he concludes by saying, "And one for Penny!" It's not a ploy. He always brings the additional item to her. I can imagine these same patterns played out as they get older. And I am confident that they will both, throughout their lives, look for ways to care for one another, comfort each other when they cry, and keep each other safe.

1 comment:

  1. Thank you for finding and sharing this. Yes, special needs adds another element to life. But I wouldn't trade that for anything in the world. And most of the time it's positive. I cannot imagine how it would ruin a family!