Can't wait to hear your vacation stories this month on The Road. Also, please share our Fundrazr page so we can raise enough money to get to Indianapolis next month and continue to spread the word and connect with other families.
Summer is starting and so are the vacations. Do you have a favorite place to go with your loved ones? Are there places that are better suited for adults who have Down syndrome that you can recommend to other families? We'd love to hear your stories and share your favorite vacation photos! Josh and I are vacationing at my mother's. She lives near the beach - but Josh LOVES the pool (not so much with the sand) ! I love seeing him get some much needed exercise as he swims back and forth making laps in the cool water. He's always been a water baby and learned to swim at a young age.
Can't wait to hear your vacation stories this month on The Road. Also, please share our Fundrazr page so we can raise enough money to get to Indianapolis next month and continue to spread the word and connect with other families.
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Some of you may have noticed that we've been fundraising lately and wondered why. Since we're a very new group, I thought I should take a moment and explain exactly what's going on to those of you who have been with us so far, and any new people that might see our pleas for help. What we're doing We've also been involved in spreading the word about #JusticeForEthan and raising awareness via World Down Syndrome Day and the A to Z Blogging Challenge. Most of all, we've been building connections with other parents. One of our main missions on "The Road" is sharing our personal stories in an environment that is accepting and understanding of individual choice. We all have different perspectives and by voicing our opinions we can learn from each other. Why is "The Road" important? There are already several national support groups for Down syndrome out there - so why do we think we need to add to the list? We here on The Road feel that our specific needs are sometimes overlooked by the bigger groups. We understand that "the Nationals" have their hands full with what they each do well and that work is important. We also believe that as caregivers, our experience and knowledge matters. Stories are important tools. They allow us not only to share our experience with each other and to pass that experience on to parents with younger children who have just started their journey - but they also provide a way to record our history. We've got a unique place in the narrative - the first generation to be "included" in schools and now facing the new challenges of living longer and expecting to be "included" as adults in the community. Our Challenges The members of the team are all volunteers. We're "Moms on a Mission," dedicated to a cause we believe in. We're just starting to get organized and get the word out. This all started as a direct result of #JusticeForEthan and the grassroots advocacy that grew out of tragedy. Connections were created, support was organic, the voices multiplied, and friendships were formed. However, we also realized that there was no structure behind our efforts. We were each doing what we could in our own sphere of influence. Together, we can do so much more, but how do we reach each other? Many parents of older individuals are not familiar with social media. They may use it occasionally, or be completely "unplugged." So how do we connect with those people and add their voices to the story? One answer may be to spread the word at the already established national conventions.
My personal plea I'm not one who is comfortable asking for help. I'm not a salesperson. I do, however, have a strong calling to make this group a success and help as many people as possible. We're not wealthy. We, like many families caring for adults with developmental or intellectual disabilities, rely on government programs to make ends meet since I left work to stay at home with Josh. There are two sides to this reality as I see it. 1) It gives me the insight necessary to understand the situation first hand of those on the margins - those whose lives depend on society caring enough to support finding better programs and solutions. 2) It makes it hard to promote and grow any type of venture that requires money. I can write, talk, and share till the cows come home, but finding money for travel expenses and infrastructure is difficult. Our Latest Effort If you believe in our cause, and would like to support our efforts, please consider donating to our FundRazr account. Open for Suggestions If you have an idea for fundraising that you'd like to share - we're all ears! Send us a message and we'll talk. In the meantime, please share our FundRazr page and join the construction team! :D
Add Your Voice to Our Survey A few weeks ago, there was a "landmark" decision about sheltered workshops that may end up signalling the end to all work opportunities that are deemed exclusive. I wrote about my initial thoughts in a previous post: Legal actions forced de-institutionalization and inclusion in schools. This IS a good thing - but not appropriate for everyone. Now, states and private companies are afraid of lawsuits and that is hindering their ability to provide services for those who really need them. Since then, we've had a discussion online in an IDSC group, and gotten more input from other parents. I've also created an online survey for anyone who is the parent/guardian of an adult with Down syndrome to share their thoughts. We've gotten 15 responses so far and the results are mixed. The survey asks about personal experience and thoughts about whether "sheltered" environments are exploiting our loved ones and should be eliminated. So far, 4 people think yes, they are bad in every sense and better alternatives should be created. However, 7 respondents aren't so sure that this is the way to go. You can help! Share the link to our survey on Facebook, Twitter, your blog, and anywhere else. ( http://bit.ly/DsJobs ) The truth is, unless we make our voices heard, we won't have any say in the matter. Other states are already following suit. We've seen how one court decision can set a precedent and cause other states to react, sometimes without thinking it through all the way. (i.e. de-institutionalization and inclusion in schools) As we spend some time this month talking about jobs, I hope you'll take a few minutes to complete our survey, share your own experience on our Facebook page, or send us a picture of your son/daughter/loved one at work for our Pinterest Board. If you've got a story to share, let us know and we'll get it posted to our Guest Blog page. There's LOTS to talk about this month so stay tuned and join the discussion. Let YOUR voice be heard! Also, if you find any good stories already posted online, please share them with us. I found this great story on "Adventures with Beth." Congratulations Beth on your one year anniversary at Little Caesar's!
Recent activity in the courts and on Ds social media has focused on the issue of doing away with sheltered workshops. I'd like us, as a community, to come up with a statement that says what we think and how we feel. Here are my initial thoughts. Please feel free to critique and add yours to them. We hope to have a comprehensive statement on the issue for next month when we focus on jobs as the topic of the month.
tOPIC OF THE mONTHIn the NewsOne of my roles here on The Road is to scour the news for stories that are relevant to our community. I usually share them via “ScoopIt” and post them to our RebelMouse site. Once in a while I’ll be particularly interested in a story and elaborate on it either on FaceBook or here, on my blog page.
Two recent articles about lawsuits that have been filed on behalf of people with developmental disabilities caught my attention. In preparation for our 321 eConference session yesterday, "Finding Support via Social Media - Blogging and Internet Communities" - I did a lot of thinking about WHY I choose to share my story on various social media outlets.
At this stage in our lives, most of us don't have room or time left to get excited about things like that. We're too busy focusing on the here and now - and we love our "kids" for the adults that they've grown in to.
Until recently - I passed over all the Facebook statuses, Tweets, and news articles that talked about research because I didn't think they had anything to do with me, my son, or our community. 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:
Rion gives us a perfect exampleI 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! There will be more "snip-its" to come - so stay tuned! Intro to the Show, Community, Josh, and me... |
WalkersvillemomI'm Stephanie - Mom to Josh! Archives
June 2014
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