By Jo Ann Simons, Ruderman Family Foundation Disabilities Advisor and CEO Cardinal Cushing Centers
Sometimes days go by and even weeks when I do not think about it.
However, it was a Sunday, an ordinary day, when I was forced to think about it. Dorothy called me. I knew Dorothy from a previous position I held in the disability world. She and her husband are devoted parents to Cheryl, who has Down syndrome. Dorothy and her husband forged a path of inclusion for Cheryl that allowed many of us to follow. Defying the conventional wisdom of the day, without Federal or state laws as protection, Cheryl was included in all aspects of life. She now lives independently and until recently, was competitively employed.
Immediately, I knew why Dorothy was calling. Call it a sixth sense or just call it knowledge. Cheryl had been diagnosed with the beginning of Alzheimer’s, an almost inevitable diagnosis for adults with Down syndrome.
Advances in medicine have extended the life span of persons with Down syndrome and also the real possibility of Alzheimer’s. There is an indisputable link between Down syndrome and Alzheimer’s. Anybody with Down syndrome, if they live long enough, will eventually develop this disease.
That afternoon, I found myself listening to this mother, herself in her 80’s, trying to make decisions to help Cheryl on this next part of her life’s journey. Her struggle was how to continue to support Cheryl to live independently and make sure she was safe and receiving the health supports she now needs. It was the same kind of decision many children have to face with their elderly parents: do we unplug the stove, when do we alarm the doors, how do we tell someone who is proud and independent that they can no longer live by themselves? How do you do this to a person who has fought society’s low expectations for over a half century?
You do it with grace. And with my thanks for showing me how I might do it. My son is 32 and he has Down syndrome and this is the future that awaits him.
Unless we find a cure.
— Jo Ann Simons