Many of you know that I have a younger sister who happens to be Developmentally Disabled. We have lived with my sister full-time for a few months twice before when our Mom was in a nursing home, but we became permanent room-mates when Mom passed away in December 2013.
Since then, I’ve learned that growing up with my sister and being responsible for her full-time are two distinctly different roles. I knew the day was coming for years and tried to prepare, but I was not really ready when the day arrived. Number one, it meant the loss of my parents. Number two, it meant some major life-style changes for her and for us. Thankfully, she has made the whole process much easier than it could have been with her generous and giving attitude.
I was 11 when my sister was diagnosed with Cornelia De Lange Syndrome at the Cleveland Clinic. I distinctly remember the day Mom and Dad brought her home with the testing results as they were extremely upset. It wasn’t really the diagnosis that troubled them, after all, they would not have gone to the Clinic had they not suspected there was a problem. The angst they were experiencing came from the recommendation by some of the doctors to immediately institutionalize her for the sake of the other children. That could have been the best choice for some families, but after much soul searching my parents felt it was best to keep her at home. I was relieved as I did not know her as a child labeled with a syndrome and disability, but just as my little sister.
I’m not a big fan of labels as they can sometimes limit how you view someone, but I think I have clung to an anti-label mindset as that 11 year old sister of an Individual with Development Disabilities over the years. I WANTED her to live as normal a life as possible and to be loved for the ‘smart’ person she was and is. Now that my role has changed as an adult I still want those things for her, but I have found that by understanding her disabilities, I’m better able to help her figure out her future and how to expand her possibilities.
Our home education philosophy of finding the best resources and help for the individual who is learning about life has worked well for this situation as well. The Cuyahoga County Board of Developmental Disabilities and Welcome House have provided incredible resources. Margie would not be thriving the way she is without their support and wisdom and we are grateful. These organizations and their staff have helped us to understand that her limitations do not necessarily mean she cannot do something, but that there might be a different way to help her to do them.
I’ve learned that my sister doesn’t do well with abstract concepts, but she does great with habits. Get her to do something on a regular basis and she is a force to be reckoned with. We all have our imperfections, some more evident than others, but as my sister and I are each allowed to learn in a way that best suits us, we have that ability to learn and to grow.
If you are in the midst of caring for a child or a sibling with special needs, I am always on the look out for resources and would love to hear from you.