Phoenix Recap – NDSC15
By: Stephanie Holland
This year the annual NDSC convention was held in sunny Phoenix, Arizona. The 100+ degree weather made things outside of the conference venue a bit sticky, but inside everything was “cool.” If I had to sum up my own experience this year I would use these three words: collaboration, friendship, and hope.
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!
People In Your Neighborhood
By: Stephanie Holland
Yes, I'm a Sesame Street fan from way back, and today as I was looking at photos on my news feed, this song popped in my head and wouldn't go away. We're so lucky to have social media to bring us together across great distances, but there's nothing like meeting face to face!
In the Down syndrome community, we use the internet to form alliances and help each other reach goals. There are so many things we can do to help make the lives of those we love better and richer.
Just about the only thing we can't do on the internet is give each other a big hug to show how grateful we are for the work they do.
Random Acts of Kindness
This year, we'll be celebrating World Down Syndrome Day on March 21st (3-21) with the seven national Down syndrome organizations by completing random acts of kindness.
We've started a list of possibilities that our adults who have Down syndrome can do.
You can see the list on Pinterest or on List.ly
For more about the event, check out the article on Huffington Post from the chairman of IDSC - Beth Sullivan
The new year brings new opportunities and a chance to look back on how far we've come. The beginning of 2015 marks our first anniversary here on The Road. To measure our accomplishments we can look back at numbers:
But what do they really tell us? In the fast-paced world of social media, those numbers may not be too impressive. But, in real life, I think, we've accomplished something pretty amazing.
We've started building relationships and supporting each other in a way that's new and different from anything we've had before. We've found a way to use social media as a vehicle to share our experiences.
For me, it's the personal connections that really matter.
Advocacy for All
By Stephanie Holland
Creating an advocacy agenda that helps parents, caregivers, and adults who have Down syndrome.
(noun) public support for or recommendation of a particular cause or policy.
In the Down syndrome community, there has been a long hard battle being fought in the trenches from social media, to "the Hill" to get the ABLE Act the attention it deserves. This week, the House voted to pass the bill 404 to 17. There are still some detractors, but overwhelmingly ABLE has been touted as a "huge victory for the disability community."
While we at The Road are excited for those whom the bill helps, we also realize that it only affects those who can afford to save for the future. Many in our segment of the community - caregivers of adults - may not be able to benefit from ABLE. Yes, the bill will allow people to save resources and still remain eligible for SSI benefits; but for those who rely on SSI for everyday living expenses, savings accounts are not an option.
Things We Need
In the days to come, we will post a series of articles aimed at educating caregivers and self-advocates on issues that we think are important to our specific community. These issues affect people from all socioeconomic realities.
As we look toward creating an agenda for 2015, these are some of the issues we'll be advocating for.
We invite all of our followers to join the discussion and offer any suggestions on how to proceed on these items.
Congratulations to all those who worked on ABLE, especially Sara Wolff !
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.
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.
About Us! I'm Karen!
Also known as Mom at Just Joshin' Ya on Facebook
So how about some fun questions:
Who is your favorite Muppet?
The two old guys.....they get to say things that most of us are thinking. They don't care to be "politically correct"! There are many days, I'd just like to blurt out something I'm thinking without thinking about consequences!!!! I actually have enough problems having a lack of filtering at times......but I'd love to be able to get away with the things these guys do. I bet by the time I'm their age, I will have an awful time controlling my mouth and I probably won't have too many friends either. Yes, LOL!
Life on "the road" of caregiving for adults who have Down syndrome.
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Mardra Sikora (Facebook)