Back in 2000, my colleague Kate Scorgie and I published some research on how having a child with significant disabilities changed the lives of parents in some positive ways. A lot had already been written about the stress, sorrow, and other negative aspects of parenting a child with a disability, but we felt there were also some very positive parts of the experience that needed to be acknowledged. We found that children with disabilities transformed their parents’ lives in some positive ways.
Since then there has been a lot of discussion and analysis of this process of transformation. Some have suggested that these positive changes in parents lives are not real, but a rationalization to cope with the negative aspects of the experience. This month, some of my colleagues and I published a study that attempts to test whether the beneficial aspects are real or not, and the results confirm the benefits reported 14 years earlier. The results are summarized below:
As seen here, 63% of these parents of children with disabilities agreed (or strongly agreed) that having a child with a disability “has been positive for our family, and 87.9% agreed (or strongly agreed) that it resulted in them learning “what is really important in life.” The part I want to talk about right now is that 86.4% found that it resulted in “wonderful people” coming into their lives. these results are based on a survey of 538 families of children with a variety of disabilities.
On a more personal basis, our son was diagnosed with MECP2 Duplication Syndrome at age 18 and he is now 24. In the 18 years before his diagnosis, we were often in contact with other families of children with disabilities, and it was great. After getting his diagnosis, however, we have been able to network with other families who share a lot of the same challenges due to having a child with the same diagnosis and that has been truly wonderful. Even when it is heartbreaking, it is still wonderful.
McConnell, D., Savage, A., Sobsey, D. & Uditsky, B. (2014). Benefit-finding or finding benefits? The positive impact of children with disabilities. Disability & Society. DOI:10.1080/09687599.2014.984803
Scorgie, K., & Sobsey, D. (2000). Transformational outcomes associated with parenting children with disabilities. Mental Retardation, 38(3), 195-206.