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!
The Intersection of Awareness and Health Concerns for Adults who have Down syndrome
As we say goodbye to Down syndrome Awareness Month, I'd like to personally thank all those who participated and helped us with our efforts! We managed to finish strong on the 21 for 31 blog challenge and we had so many great photos!
While sharing stories and pictures was fun, we also started on a mission of greater importance: spreading awareness of health disparities within our own community. Thanks to Global Down Syndrome Foundation's national spokesperson, Beverly Johnson, the huge difference in life expectancy for people of color who have Down syndrome and Caucasian people with Ds was reported in mainstream media.
"There's a remarkable disparity between children of color who get Down syndrome — life expectancy is age 23 — and non-black children with Down syndrome — life expectancy is 63 years old,"
We are so grateful that someone with her star power spoke out on this issue. In response, we created a petition to try to get advocates and families to help us ask the national Down syndrome groups to spend more time and resources on this issue. Within days, we heard from 3 of the 4 groups petitioned, and we've started a dialogue around this issue.
We're all about sharing stories here on The Road, so it's only natural that we'd start a book club - and call it a story club.
There have been some great memoirs published over the years, and reading them together gives us a chance to share our reactions. The Story Club is the place where we can read about how one family faced a bump in the road, and brainstorm about how we might do things the same, or differently.
Vivian is 20 years old and counting the days (literally) until December 21 when she turns 21. She is in a program called TRACE through the public schools and is currently working 2 jobs. She volunteers at a Library where she works on the returned materials, scanning, sorting and shelving the books, DVDs and music. Her second job is at Pet Food express where her tasks include putting out new merchandise and maintaining clean shelves and displays. She is very involved in church where she is an usher and assists with the offering collections and passing out the communion elements. Like any other girl she has a boyfriend and over the years has followed the teen hotties like Zac Efron, Jesse McCarthy and most recently Justin Bieber. She loves cooking, camping and most of all listening and watching music videos on her Ipad. She is a loving and caring individual and very easy going. Her family considers her a blessing and a gift from God.
Rion is 20 years old and attends Clemson University at part of the Clemson LIFE program. Like other college freshmen, he lives in a campus dorm and enjoys socializing with other college students as well as attending the football games. In addition to taking literacy, math, technology, and cooking classes, Rion enjoys his bowling and equine classes, working out every day in the gym, and volunteering as an assistant with a children’s soccer league. A busy guy! Next semester Rion will begin an internship. He has worked as a busboy at Paul’s Wood-fired Burgers in Roebuck, SC.
Guest Post - Sue Adelman
Have you heard of "Sam's Secret Journal" ? The three book series was featured in a recent article on "The Mighty."
The books are based on a real young woman who we've met here on The Road before. She's also been featured in our posts and photo campaign for Down syndrome Awareness this month.
But for today, I asked her Mom, Sue, to talk about the books. I'm working on a project that looks at Down syndrome in books for children and young adults so I wanted to know - "What made you write a kid's book?" Her answer blew me away!
Issue Monday - Research
Down syndrome research is one those topics that divides our community. Some feel strongly that research can provide answers to medical questions and new drug therapies are necessary to improve cognition. Others point to the less than ethical tests that have been forced on people with intellectual disabilities in the past and feel just as strongly that research is too dangerous and unnecessary.
About Us - I'm Marianne!
Marianne is sister and long time co-guardian to her oldest brother, Joey who has Down Syndrome. She recently authored a children book called Will YOU Be My Friend? A book about teaching children we are more alike than different with her brother as the main character. She earned a dual degree in Elementary and Special Education from Northern Arizona University. Before becoming an author, Marianne taught for five years and then became a professional advocate at a center for parents of children with special needs. Outside of her sibling speaking presentations Marianne also works as a statewide trainer for AZ Bridge to Independent Living. Recent experiences with Joey’s services and agencies have given Marianne the motivation to affect positive changes. Her goals include educating, empowering and encouraging families, providers and agencies through improving accessibility and dissemination of quality resources through her children’s book series and speaking engagements. To have Marianne come speak about her sibling experience young and old contact her at email@example.com and www.joeysupswithdowns.com.
Feature Friday: Signposts On The Road
Now more than ever, news travels fast. Why, here at The Road, we're publishing stories daily on Facebook and Twitter, and writing editorial comments on the news on our blog on a regular basis.
We realize that not everybody has time to read everything as it happens; and some people don't subscribe to Facebook or Twitter. That's why we created a weekly overview of important stories from all over the internet. Every Sunday we give our community a chance to sit back with a cup of coffee and catch up on events from the past week.
Signposts on The Road is an online newspaper hosted on Paper.li. Each week you'll find copies of stories that we published on our different social media outlets, plus new stories from different venues. Everything has to do with adults who have intellectual and/or developmental disabilities.
So if you're looking for the latest on research or politics, or you just want to see what photos were shared during the week - Signposts is for you!
The best way to stay informed is to subscribe to Signposts and get weekly emails in your inbox. It's your one-stop source for loads of information that's important to you.
Troy is 20 years old.
He loves music, Naruto, & Special Olympics.
He participates in bowling, basketball, baseball, & track.
He will graduate with the class of 2016.
Batman is his best friend.
He is his mom's whole world.
Life on "the road" of caregiving for adults who have Down syndrome.
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Mardra Sikora (Facebook)