In our first show, we talked about guardianship and sheltered workshops with two other friends, for two hours, and didn't quite get through all of our thoughts. :D
One of the great things about being part of a team is that it gives you a chance to see different perspectives on the same issue. Karen, Mardra, and I don't ever seem to see things exactly the same, but we have a mutual respect for each other's opinions. The best way we've found to get multiple opinions across is talk it through. BlogTalk Radio gives us a platform to share some of those discussions with our community.
In our first show, we talked about guardianship and sheltered workshops with two other friends, for two hours, and didn't quite get through all of our thoughts. :D
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One of the reasons we decided to create a separate community was our realization that parents and caregivers of adults have specific needs for information. We're past the stage of schools and education. We're lucky to be living in a time when the life expectancy of people who have Down syndrome has doubled since our children were born. While this is wonderful news, it also presents unique needs for information and care giving. The problem is that some of this information is not readily available, and some may not even be written yet.
We need to create some of this knowledge by sharing our experiences with each other and learning as we go. Facebook has become a major resource for people to connect and share with each other. The Road and its team can be found there too! Our main page is where you'll find links to our web posts as well as items we share from other people. All three of us (Stephanie, Karen, and Mardra) can post to it, so you never know what might show up there. You can be sure it will apply to our community and be family friendly.
We also have a closed group where parents can discuss things and ask questions in a more secure environment. The team members may use this group to try to get a consensus about a particular topic or to discuss new projects with those who follow us before rolling them out to the general public. Last but not least, we have a public group for our Story Club. There will be more details about that in a future post. The Road We've Shared is dedicated to the memory and legacy of Ethan SaylorWhen Ethan Saylor was killed on January 12th, 2013 by off-duty sheriff's deputies moonlighting as mall security, our world changed. We all reacted in our own way - but along the way we found each other. The Road was created as a way to bring parents and caregivers of adults who have Down syndrome together. During the #JusticeForEthan campaign we realized that the existing Ds groups cater more to parents of young children. We needed our own place to discuss the issues that affect our adult children.
The Road is just one of the positive things that has come out of this tragedy. My hope is that you'll learn a little about our personalities and how even though we have different perspectives on things we've all come together for the same cause.
So... I'll go first! A few questions just for fun: Fridays in October will be dedicated to explaining some of the features we've built so far at The Road We've Shared. Our WebsiteSince The Road We've Shared is still less than a year old, all of our communication tools are still works in progress. We're trying new things, adding new features, and waiting to see what the community likes and uses most. Our website is the main hub to all things "Road" related.
The RoadMap Blog is the main feature of the website. We started out with individual blogs for each team member, but as time went on, we found that to be too cumbersome and hard for people to follow. So, we consolidated into just one blog for everyone. We'll use it from now on to post new information and we'll be moving all of the previously posted information over, slowly. (*By the way, did you know you can get our blog delivered to your inbox? Just type in your email on the right and click "Subscribe.") In addition to the blog, you'll find lots of other cool stuff like our Video Gallery and Photo Gallery. (Under the tab marked "Our Scrapbooks" on the left) Access to all of our BlogTalk Radio Shows can be found under "In The Media." And a couple of my (Stephanie) pet projects "The Research Corner" and "Down Syndrome in Children's Literature." There's so much more, I'll let you explore and find it all. (Especially the List.ly lists and Pinterest boards) We'd love your input on features you'd like to see or things you think we should get rid of. What you find interesting or confusing. We hope you'll help us fine tune The Road as we close out our first year together! Yes! You ARE a Caregiver!August is healthy living month on The Road and as we focus on ways to keep our loved ones active and healthy, we can't forget that we also need to take care of ourselves.
A recent New York Times article talked about the facts of caring for an adult child with an intellectual / developmental disability: “Other 21-year-olds move out and take jobs, but most of these children stay at home,” said Dr. Dykens, the director of the Vanderbilt Kennedy Center. “You have aging parents and aging offspring. You are each other’s for life.” Our situation is different from other parents. “Having a child that has a disability, it’s all-encompassing,” he added. “You could see how people would lose themselves.” By the time our children reach adulthood many of us define ourselves first and foremost as a parent. I'm "Josh's Mom" above all else. It's a statement of pride, but it's also an indication of my position as lifelong caregiver.
Originally posted 1/31/14 - Updated 7/24/14 by Stephanie Holland *Our first radio show was a 2 hour conversation about "Guardianship." I know not everyone can listen to two hours of interview - so if you want to hear just the intro's for the team - here they are! Intro to the Show, Community, Josh, and me...
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