Saturday, March 21, 2009

The Sibling/Parent Disconnect: An Age-Old Issue

The other day, my supervisor told me that he found a book in the swap pile in the laundry room of his apartment building. It was called "It Isn't Fair: Siblings of Children with Disabilities" (you can find it here, on Amazon). Although it was first published in 1993 by Exceptional Parent Press, the cover photo suggests the 80s and the content goes back to as early as 1972. It was really interesting to read an article orginally published in Exceptional Parent magazine which was an interview with four siblings in their 20s. Many of the issues resonated with me and it struck me that sibling issues are shared by sibs not only across state lines and oceans, but across the decades. What was even more interesting to me was the case studies with parents, who often had no clue about what their typically developing children were feeling and why. Although they had a real desire to help their children, they genuinely had a lot of trouble understanding how having a brother or sister with a disability was impacting their other children. I believe that holds true today, based on the conversations I've had with many parents and even from reading a recent book chapter by a parent advocate. Reading his accounts of raising a child with autism and his typically developing brother, and seeing the boys' relationship through their father's eyes, was a bit unsettling. The concept of "fair" is tricky to begin with, but it seemed to me that there were some pretty high expectations for a typically developing three-year-old, without a lot of understanding of HIS special needs. This is why it is so important for siblings to share their stories with parents, service providers, and each other. We have a lot to offer our brothers, sisters and families. With the right amount of encouragement, support and room to grow into our own selves, siblings can play a very positive role throughout their siblings' lives.

1 comment:

  1. Thanks for telling us about this book - I will check it out when I get a chance. It seems that some parents are so consumed with caring for the disabled sib that they may not realize their non-disabled sibs have needs too. My parents always called me "the third parent" and praised me for staying home alone with my sib every afternoon while they were both working, and seemed to consider it normal for a six-year old to be babysitting instead of playing with friends. It was also interesting that they sent my brother to summer sleepaway camp, which he enjoyed immensely (and I suppose provided temporary respite for us all), but did not arrange for me to have a similar experience.

    I think this is one reason I always felt more comfortable with adults when I was a child, because I was pretty much treated like an adult from the age of six onward, expected to share care-giving and household responsibilities like a third parent. I never got to play and make messes, because I was too busy cleaning up my brother's messes and looking out for him. But all my parents saw was a dutiful, "low-maintenance" child, and that's all they wanted to see.