We need to create some of this knowledge by sharing our experiences with each other and learning as we go.
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.
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Today's adult blog spotlight is on Sherry Palmer who writes about her son Charley at Life With Charley. Charley is one of those guys whose smile can melt anyone's heart. His mother's writing style is so honest and funny, that readers can't help but fall in love with both of them.
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. Sean is 21 and loves Wii, all sports, dancing, acting and is looking for a new girlfriend. He works at Trader Joe's and also loves public speaking with his mother to parent groups.
You can follow him at Who's The Slow Learner? on Facebook. Marcus is 24 years old, his birthday is in June and he is already planning the next big party.
His favorite job was making spiral bound planners at Wright Printing, next he’d like to learn how to drive a horse carriage. Preferably in Times Square, but one step at a time, we are on a waiting list with our local Equine Association for this training. Currently his favorite song is “On Top of the World” by Imagine Dragons. But truly, he has about 100 favorite songs. Tuesdays in October on The Road, we've invited other parents to share their stories. First to respond to our invitation was Dad, Juan Castillo, who has two sons with Down syndrome. By Juan Castillo My name is Juan Castillo and I am daddy to the two most awesome boys in the world. Blake Uriah age 5 1/2 and Dalton Vance age 1 1/2. They were both born with Down syndrome and are most definitely daddy's pride and joy.
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: Saturdays in October will be devoted to shining a spotlight on other blogs about adults who have Down syndrome! Downright ValuableOur first featured blogger is Val from Downright Valuable. She lives in Canada and writes her own blog. Downright Valuable is full of fun and adventure! Recent posts tell readers about her adventures at the fair, the beach, and at summer camp! Val participates in lots of sports and likes to travel.
One of my favorite posts is called "7 Things I Like to Do In My Spare Time (And You Can Too)" which includes a picture of Val playing her guitar! This is a must read for everyone in the Down syndrome community who wants a glimpse at how great life can be with an extra chromosome! |
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