One of the ways society is finding out more about Down syndrome is through television and film. While healthy debates within our community critique the message of stories and methods used to tell it, we can all agree that the performances are priceless! We'll be exploring how the arts allow adults with Down syndrome express their creativity and raise awareness as we prepare for the Ds Road Show in October!
How Do We Face The Scary Truth? Down Syndrome and Dementia: A Caregiving Issue That Needs Our Attention
By: Stephanie Holland
Parenting, of all kinds, requires hard work and determination. We all want the best for our children and try not to let what might go wrong keep us from living our best today.
Sometimes, we need to put our own discomfort aside. Alzheimer’s disease is affecting record numbers of families, and a disproportionate percentage of the Down syndrome community will continue to be affected. We have seen an increase in attention being paid to research for a cure. We also need increase our efforts to support families that are facing caregiving for loved ones with dementia and other medical conditions that typically occur in adults with Down syndrome.
The Down syndrome and disability communities have been behind her, helping when and where we could, but for Patti and her family, this has been a very personal journey. There is good news however! This has been a week of breakthroughs worth celebrating! Today, I want to take a moment and update our community on some of the phenomenal progress that has been made, and celebrate Patti, the Saylor/Richmond families, and the thousands of people who have been touched in some way by #EthansLegacy.
Z - Alzheimer's Disease
We can debate which one is “better,” but the truth is, when it comes to providing the best care for our loved ones, we need all the help we can get.
In Chinese philosophy, yin and yang (also, yin-yang or yin yang) describes how apparently opposite or contrary forces are actually complementary, interconnected, and interdependent in the natural world, and how they give rise to each other as they interrelate to one another.
As our children age out of school, we're in charge of seeking out the best supports for our families. These two sources are great places to find answers and keep up on what's new in disability services.
X - Xenocide
By Mardra Sikora
Today we are using a word found in the urban dictionary, a term derived from fiction, however the threat is still real.
I confess, I have scrapped and re-written this blog about 10 times. It’s not easy stuff to write, to share, or to face. Which may surprise you to hear as I have written and written and written about this. No, it never gets easier.
All I can hear right now is the line from the movie Princess Bride, “No. Is too much. I sum up.”
Let’s start with the headline of the most recent article on the website, Down Syndrome Prenatal Testing, is“NIPS: 3 babies with Down syndrome born & 2,432 more selective abortions.” I’ll cut to the conclusion: “And researchers say it is cost-effective precisely because it will lead to thousands more selective abortions of children with Down syndrome (and even thousands more abortions of children without Down syndrome).”
But that’s not all, only a few weeks ago Princeton Professor Peter Singer, stated in an interview that it is “’reasonable’ for the government or private insurance companies to deny treatment to infants with disabilities.” If you want to know more about the statement and Singer, without losing all hope for humanity, read the NCD reply here, instead.
Less than a year ago, another bioethicist publicly claimed it is “immoral” to have a child with Down syndrome.
Life on "the road" of caregiving for adults who have Down syndrome.
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Mardra Sikora (Facebook)