Volume 1 Issue 1 Volume 1, Issue 1
January, 2016 January, 2016
Volume 1 Issue 1
January, 2016
FROM THE EDITOR STEPHANIE HOLLAND Hello! This is our first edition of what will become a monthly publication. Each month we’ll have a focus topic and bring you resources on that topic. This month, we’ll focus on sharing stories. We’re bringing back the Story Club and looking at the importance of telling our stories, stories as advocacy, and as a kind of therapy. We hope you enjoy our magazine, and if you do, please share it with others!
Stephanie
The Road We’ve Shared Story Club is a virtual book club. We read memoires written by other parents of adults who have Down syndrome and discuss our reactions to what we read online. To join the club you can either access our club website: http:// storyclub.theroadweveshared.com/ or join our Facebook group: https:// www.facebook.com/groups/ TheRoadWeveSharedStoryClub/ . The first book we read was “Adventures in the Mainstream— Coming of Age with Down syn-
drome” by Greg Palmer. On our website, you’ll see a list of 45 discussion questions that we used.
Rather have an in-person book club? You can purchase and download our Story Club Study Guide and use it to host your own group. Our next session will focus on Life With Charley, by Sherry Palmer. We’ll start posting questions on January 8th! Please join us for what is sure to be a lively and thoughtful discussion.
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January, 2016
Life With Charley: By Sherry Palmer Check out our 30 minute interview with the Palmer family on BlogTalk Radio at http://bit.ly/LifeWithCharley Why I wrote "Life With Charley" July 1, 2015 From http://lifewithcharley.blogspot.com/ Someone recently asked me why I wrote Life with Charley. I opened my mouth to answer, and then had to stop myself. You know what? I didn’t know. Was it ego? The desire to be published? Maybe. The fact is, I hadn't thought about it for so long, that even I didn't have the elevator speech for that. I've been writing Life with Charley for so long that even I can't remember the actual day I started. I do know this, however. I didn't own a computer then. Everything I wrote was penned long-hand. Stories, dialog, details. It's all there, between the pages of my journals sitting on the bookshelf in my study at home. Every milestone, success, failure, shocking admission. I never planned on a book. Then one day, Charley was sitting in the middle of the kitchen floor playing with his robots, while at the same time telling me he wanted to go on a date. That was the day I knew Life with Charley had to become a book. Why? Because I know there are other parents who might need to know Charley. People who might
need to know what a gift they’ve been given. People who might have more patience for their child if they could know my child. So, I dusted off the journals and decided to share. The good, the not so good, and the in-between. Perhaps my stories could offer hope, joy, comfort. Perhaps they could reach into the heart of someone fearful of the diagnosis of Down syndrome, and let them know the journey they are about to take is one they were chosen for. Sometimes we choose our journeys. Sometimes they choose us. That’s how Life with Charley was born. With the desire to allow people access to Charley. It hasn’t always been easy. In fact, as I say in my book, "Writing isn't easy. It means telling the truth when I want to lie.” Seriously, why would I want to tell complete strangers what an unmade bed our lives are? For the price of a book, you get a front row seat to our shortcomings. That said, I hope you also get a front row seat to our overcomings. Join us, won’t you, on a journey into the mind of Charley. His silliness, his shenanigans, his dancing. The way he lights up the room when he walks in. The way he is 100% himself 100% of the time. His innocence. His logic. His sweetness. He is a story worth telling.
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January, 2016
B – BLOGGERS ADVOCATES This article, written by Mardra Sikora, was originally published as part of our annual April A to Z Blogging Challenge. (April 2, 2015)
It would be a gross disservice to not include the families who advocate online by sharing their truths as part of the All Together Now collaboration here on The Road. (Of course, you may think we are partial to the blogging cause, as that is what brought us together to begin with – Fair, but not the whole story.)
A question that springs up in advocacy circles is: Why aren’t there more adult self-advocates or families of adults with Down syndrome out there blogging? Sharing their world? Telling their stories? Unfortunately, this lack of voice and presence often is misunderstood to be hiding. You know, the old fleeing equals guilt theory. Thank you Google for exhibit A – the point above. Blogging is a new thing. When my son was born and during his young years, I did write a bit about him and me and our story. These were the old days, when journaling was a private affair. If you wanted to go public, it meant writing articles, a slightly different beast, which were hashed out, submitted, fought for print space and so on. I remember seeing one book on the shelf by a father who had a two year old son with Down syndrome, and with some combination of judging and jealousy I blurted out, “Two Years! How does he have a whole book on this from only two years? (And also, how did he have the time to write and publish it?)” That’s right kids, books! To quote from The Princess Bride, “Books! That’s what we called TV in those days.” Well, this was the early 90’s and not quite that extreme, but you get the idea.
Where was I? Oh, right, so why don’t more families of adult children or adults have blogs? As you can see, one is, although we are (as a global community) at almost 20 years (semi-officially) of blogging, it’s not really of our generation.Another factor is, many families are kind of, well, over it. The ignited passion of the battles of changing the world have turned into the living of life. Of work, home, family, rinse, repeat. There are, of course, other reasons that vary as widely as the unique stories they live. But HO! This doesn’t mean none of our families with adults with Down syndrome blog and share their day to day truths. Although outnumbered, let’s say several to one, we are a small but diligent crowd with a mix of experienced and new advocates using the World Wide Web to tell our truths. These truths are what make an impact. Truth is the critical center to the importance of blogging. There are those with kids in college, those with kids working down the street, those with siblings older and ornerier, those who want to be rock stars (maybe really are), those who have their own business, and those who are story makers,and more!
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Do all of these folks agree on the big subjects that face our families, such as sheltered workshops and training of our first responders and how the future should look? Can I get a Hell No!?! Can all of these families be lumped together into one category as…umm…well any category, really? Nope, not really, no. The one thing they have in common, they all love someone with Down syndrome. Well, two things, they all love someone with Down syndrome and they are all sharing their truths in order to help the world better accept, and give a chance, to that someone. So here is our Road Style Shout Out to those bloggers who help fight the Google War, share a window into their lives, and show their #Truth. Rock on, Bloggers!
January, 2016
RION GIVES US A PERFECT EXAMPLE A while back, Rion Holcombe's family posted a video on YouTube that they recorded when Rion found out that he would be attending Clemson University. The video went "viral" and people all over the world watched and smiled with him! We were lucky enough to get more of the story from his mom, Susan, last month when she wrote a guest blog for our site. (The first and hopefully not the last!)
Here is a Listly list for easy sharing and adding your own or another you know. Let’s keep talking.
WHY STORIES ARE IMPORTANT Originally posted by Stephanie Holland 3/1/14
This month we'll focus on telling stories about the adults who have Down syndrome that we love. We'll also address some of the issues that surround talking in public about our loved ones like: What stories should be told - should we only tell the good ones? How should they be told - by whom ?
What about privacy? What audience? Does it do any good?
https://youtu.be/f5kWAOYvoYw Tonight, she shared with her Facebook community a video that a stranger made, about Rion's video. As you can see, Rion's story had a positive effect on young person who doesn't know him and she shared it with her friends / followers.
THE BUTTERFLY EFFECT When we tell our stories, we really have no idea what effect, if any, they will have on the world. Sure, there can be negative consequences if people decide to use them in inappropriate ways, but they can also help. It's my belief that if one of my stories can influence how even one person thinks about people who have Down syndrome in a positive way, there is a potential for that change to grow and spread exponentially. Thanks for sharing Rion and Susan!
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January, 2016
ADULTS WITH DS BLOGS Listly by The Road We've Shared http://list.ly/list/dtE-adults-with-ds-blogs
The Road Map Blog—http://theroadweveshared.com/blog Grown Ups And Downs - http://www.mardrasikora.com/grown-ups-and-downs/ Walkersvillemom—https://walkersvillemom.wordpress.com/ Adventures With Beth—http://adventureswithbeth.blogspot.se/ Marty’s Moose Tracks—http://martysmoosetracks.blogspot.com/ Orange Juice Flavour Sky—http://orangejuiceflavoursky.blogspot.com/
The Ordinary Life of an Extraordinary Girl—http://www.theextraordinarygirl.com/ Life With Charley—And Down Syndrome—http://lifewithcharley.blogspot.com/ My Name Is Sarah—http://sarahely8989.blogspot.com/ The Sassy Southern Gal—http://www.thesassysoutherngal.com/ Who’s The Slow Learner—http://www.whostheslowlearner.com/blog/ Widening Circle -http://www.dsbutterfly.blogspot.com/ Monicajakubisin—https://monicajakubisin.wordpress.com/ Down Right Valuable—http://www.downrightvaluable.com/
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THE SCIENCE BEHIND SHARING STORIES Being called a “Mommy Blogger” is not always a compliment. The term elicits visions of stay-athome, soccer moms who use advertisements on their sites to make money. Critics complain that the focus is on revenue and clicks rather than the skill involved in writing well. Disability activists take offence when the parent perspective overshadows that of the disabled individual. Considering all of this, why do we continue to tout the practice of sharing stories? Let’s look at the science behind blogging and sharing on social media. Even though blogging is a relatively new practice, researchers are already looking at the reasons why parents blog and what benefits/challenges exist. Studies have found that parents in the disability community blog either to enhance their psychological wellbeing and/or change societal views. (1,3) Blogging or sharing within a defined community has additional benefits. “Social support facilitated by community members can help caregivers surmount challenges and be effective in reducing psychological stress and enhancing the quality of life for individuals [with disabilities].”(4) While we must be careful not to overshare, or speak for our loved ones, there are benefits experienced by those connected to others through the internet that previous generations did not have: (2)
reducing the isolation experienced by parents fundraising opportunities increases research efforts empowerment / advocacy
Researchers that looked at the impact of the internet on the autism community came to the conclusion
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that internet access could be considered an element of privilege for the disability community. “Although the Internet carries the danger of spreading false information, the benefits of the World Wide Web appear to outweigh negative impact. However, concern should be raised for individuals with low-functioning autism and of families of low socioeconomic status. Families living close to the poverty line are quickly left out of autism discourse if they do not have access to the Internet and other resources, and individuals on the lowfunctioning end of the spectrum are less capable of self-expression. Advocacy groups risk leaving lowfunctioning individuals behind ….” Which brings us to why we think it is important for everyone in our community to be given the opportunity to tell their own story, regardless of perspective, socioeconomic status, race, culture, or any other label that could be used to divide us. We are stronger together. We all have a story to tell. The benefits can be great. Resources: Bronstein, J., & Knoll, M. (2015). Blogging motivations of women suffering from infertility. Information Research, 20(2). Jordan, C. J. (2010). Evolution of autism support and understanding via the World Wide Web. Intellectual and developmental disabilities, 48(3), 220-227. Pettigrew, S., Archer, C., & Harrigan, P. (2015). A Thematic Analysis of Mothers’ Motivations for Blogging. Maternal and child health journal, 1-7. Saha, A., & Agarwal, N. (2015, August). Demonstrating Social Support from Autism Bloggers Community on Twitter. In Proceedings of the 2015 IEEE/ACM International Conference on Advances in Social Networks Analysis and Mining 2015 (pp. 1053-1056). ACM.
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WHO WILL SPEAK FOR US? Part of telling our story is about leaving a record of what it has been like for us; creating a historical account for future generations. One of the earliest records of being a parent of a child with Down syndrome was written by Dale Evans Rogers. The book is written in the voice of Robin, the daughter of Dale and Roy Rogers, after her death at the young age of 2 1/2. Through this account, we get an idea of what it was like to have a child with Down syndrome in the ‘50s.
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Romy Wyllie gives an account of her 52 year journey with her son Andrew. She adds important pieces to the social history of parenting a child with Down syndrome by comparing services and supports that were available before and after the passage of “Education for All Handicapped Children” in 1975,
These two books provide us with a glimpse at the history of our own journey. Reading them helps us understand how far we’ve come,. They can also inspire us by highlighting some of the things that remain the same, but need fixing. But no single perspective tells the whole story. The more we write, the more we understand. Understanding helps us be better equipped to create change..
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Volume 1 Issue 1
January, 2016
Finding Support via Social Media, Blogging, and Internet Communities http:// www.slideshare.net/ TheRoadWeveShared/ finding-support-viasocial-media-bloggingand-internetcommunities
Thanks for reading our first edition! See you next month!
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