Monday, April 23, 2012

A Parent’s Worst Fear: When Down Syndrome Leads to Alzheimer’s

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?

Jon and me
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
Originally published on the Ruderman Family Foundation blog.

Monday, April 2, 2012

Disabilities Discrimination: Against the Law But All Too Real

Another of my blogs which was originally published on the Ruderman Family Foundation's website:

I recently attended a breakfast where Congressman Stephen Lynch of Massachusetts was the speaker. He shared with us that he had been to Iraq many times in the past few years and on this occasion was meeting with various government ministers. At one point, one of the ministers said to him, “Excuse me, Congressman. I feel betrayed by the United States government. You never told us how hard democracy is.”

While the Iraqi people are learning how hard democracy is, we are willing to invest our money and the lives of our sons and daughter into a cause which we believe is just and right. It is also absolutely necessary for our civilization to progress.

I would like to suggest that the same can be said for the inclusion of persons with disabilities. While the Americans with Disabilities Act and other legislation makes it unlawful to discriminate against persons with disabilities, discrimination exists every time a person with a disability in excluded from loving, learning, working or playing.

Democracy-loving people, wherever it the world they live, should be demanding a society where every member is valued and has equal access to its opportunities. Inclusion is hard work but lives do not have to be sacrificed to create a just world.

Our civilization depends on it.