Category Archives: National Down Syndrome Awareness Month 2014

Feature Friday: The Road We’ve Shared Story Club

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.

First on our list was “Adventures in the Mainstream” by Greg Palmer.  

So far, we’ve been posting questions on our Story Club Website and in our Story Club Facebook group.

We’re only about half-way through the book – so if you’re interested, there’s still time to get in on the fun.

Discussion Format

Our questions are designed to get reactions about a specific piece of text from the book.  This way, you’re not required to remember every bit – we provide the quote we’re referring to – and ask you a few simple questions to start the discussion.  Here’s the latest question as an example:
Q12)  ”Getting him to go also took some lying.  I told him he could get a burger in Kilronan if he came, although I thought the possibility that the tiny village of Kilronan would have any burger joints was about as likely as a Kilronan K-Mart next to the Man of Aran Taco Bell.  But I’ve about had it with Ned staying on the boat.” p. 29

What is your reaction to the deception Palmer uses to gain compliance from Ned?  Have you told “white lies” to your loved one?  Used bargaining techniques that you wouldn’t consider using with other adults?

Live Talks

We’re in the process of scheduling live discussions over the internet so we can capture more of the feel of a real book club.  Our next book will be “Life with Charley – A Memoir of Down syndrome Adoption.”
We’re super excited about this one because the author, Sherry Palmer, is a friend of ours.  We’ll be able to ask her questions about the book directly!  

Be sure to subscribe to the Story Club newsletter for information about when we’ll start discussions on this book and when you can talk to Sherry.  In the meantime, you may want to listen to our interview with Sherry and her family.

We’re Open to Suggestions

The Story Club is the latest addition to our list of services and very much a work in progress.  We’d love to hear any suggestions you may have about what books to read, or what features we should include in The Club.  Email Stephanie with any questions or comments.

Meet Vivian!

Vivian is 20 years old and counting the days (literally) until December 21 when she turns 21. She is in a program called TRACE through the public schools and is currently working 2 jobs. She volunteers at a Library where she works on the returned materials, scanning, sorting and shelving the books, DVDs and music. Her second job is at Pet Food express where her tasks include putting out new merchandise and maintaining clean shelves and displays. She is very involved in church where she is an usher and assists with the offering collections and passing out the communion elements. Like any other girl she has a boyfriend and over the years has followed the teen hotties like Zac Efron, Jesse McCarthy and most recently Justin Bieber. She loves cooking, camping and most of all listening and watching music videos on her Ipad. She is a loving and caring individual and very easy going. Her family considers her a blessing and a gift from God.

Meet Rion!

Rion is 20 years old and attends Clemson University at part of the Clemson LIFE program.  Like other college freshmen, he lives in a campus dorm and enjoys socializing with other college students as well as attending the football games.  In addition to taking literacy, math, technology, and cooking classes, Rion enjoys his bowling and equine classes, working out every day in the gym, and volunteering as an assistant with a children’s soccer league.  A busy guy!  Next semester Rion will begin an internship.  He has worked as a busboy at Paul’s Wood-fired Burgers in Roebuck, SC.
What stands out the most about Rion is his giving nature.  He will do anything for those in need whether it is helping the elderly or giving care to the sick.  Rion is a quiet, low key guy.  He likes staying behind the scenes, cheering others on and giving assistance however needed.

Rion’s favorites:

Music – Country (Blake Shelton and Rascal Flatts)

Favorite song:  Life is a Highway, The Boys ‘Round Here

Movie – Jack Frost, Shrek, comedies and musicals

TV show – Glee and Austin and Ally

Sports he plays:  swimming, baseball, bowling, basketball

Favorite pastimes:  singing karaoke, spending time at the pool with friends, boating and tubing on the lake, spending time with family

Favorite food:  sub sandwiches

Favorite team:  Clemson Tigers

Best thing about college:  meeting cute girls and being with friends

Favorite memory:  Getting invited to the Orange Bowl by the Orange Bowl Committee and Danielle Bradbury (The Voice winner)

Guest Post – Sue Adelman

Have you heard of “Sam’s Secret Journal” ?  The three book series was featured in a recent article on “The Mighty.”
Sam's Top Secret Journal

The books are based on a real young woman who we’ve met here on The Road before.  She’s also been featured in our posts and photo campaign for Down syndrome Awareness this month.
Dev on The Road We've Shared

But for today, I asked her Mom, Sue, to talk about the books.  I’m working on a project that looks at Down syndrome in books for children and young adults so I wanted to know – “What made you write a kid’s book?”  Her answer blew me away!  

Why write the “Sam’s Top Secret Journal” series?

By Sue Adelman
There are so many reasons, but first and for most would be to create hope and expectations for parents, siblings and society.  Dev and Sue went to their first NDSC convention a few years ago and heard Karen Gaffney (http://www.karengaffneyfoundation.com/) state: “I am not the exception, I am the possibility”.   I think that is the same reason we wanted to have a literary figure for others to have in mind.

When you are a new parent you believe everything is possible.  Your child will grow up to understand physics like *** Hawkins,  sing like Barbara ***, play in the NFL like *** Elway, create like Oprah ***,  be a doctor/lawyer/teacher…    As the child grows into their own person those hopes and dreams get modified and the parent (hopefully) starts to consider realistic dreams for that child: college, family, a job…happiness…   When you get an early diagnosis it seems all of those hopes and dreams are sucked into a vortex of doom.  The dreams turn to worries.  Our hope is to help keep those dreams alive for parents, kids and society.  

If we can help society change it’s viewpoint from measuring things someone can not do, to valuing ABILITY and appreciating differences each of us brings, than we will be happy.

The stories in the “Sam” series are fictional, but every thing that Sam does in the books is something our daughter Dev has done in real life.  Does that mean every child with Down syndrome will be able to do the things that Sam does, of course not, every child is different.  But if you never knew about Anne Frank, Einstein, MLK, Mare Curie the list goes on and on, how limited our dreams would be.  The stories written about these lager than life people expand our dreams and hopes for our own lives.  Kind of lofty goals, but that is the reason for writing the books.

Your Chance to Win!

In celebration of the publication of books two and three in the series, and DSAM14, Sue has offered to donate a complete series to one lucky RoadMap Blog reader! Follow the steps to get up to 9 chances to win!

*Please note – book three is still in production and will be shipped as soon as it’s available.  And, we ask that winner complete a review of book 1 (We Spy) using our online form

Good luck everyone and thanks Sue and Sean!

Entry-Form

About Us – I’m Marianne!

Marianne is sister and long time co-guardian to her oldest brother, Joey who has Down Syndrome. She recently authored a children book called Will YOU Be My Friend? A book about teaching children we are more alike than different with her brother as the main character. She earned a dual degree in Elementary and Special Education from Northern Arizona University. Before becoming an author, Marianne taught for five years and then became a professional advocate at a center for parents of children with special needs. Outside of her sibling speaking presentations Marianne also works as a statewide trainer for AZ Bridge to Independent Living. Recent experiences with Joey’s services and agencies have given Marianne the motivation to affect positive changes. Her goals include educating, empowering and encouraging families, providers and agencies through improving accessibility and dissemination of quality resources through her children’s book series and speaking engagements. To have Marianne come speak about her sibling experience young and old contact her at joeysupswithdowns@gmail.com and www.joeysupswithdowns.com.

And now, our Team Questions:

Who is your favorite Muppet?

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Animal


What song do you sing in the shower?

Worship songs

What’s your favorite food?

Mexican is my favorite food

How do you relax?

I enjoy spending time with my hubby and Joey. But also I like to sing praise and worship and pray with friends.

What do you think about DS-Connect?

We are registered but that is it. Haven’t done anything else or kept up.

How do you feel about sheltered workshops?

They are needed but need to be reformed and redesigned to focus on the person desires and needs and not their limits.

Where do you see your loved one living after age 30?

Joey will be in the same place if all continues to go well. Moving is not easy and gets harder as he ages.

What is one thing you want the world to know about your son/brother?

I want the world to know that Joey is full of life even at 54. He enjoys a good party with plenty of pretty girls and babies.

Spotlight: Adventures With Beth

Hey world! It’s time you met Beth. Beth is 30 years old, just. She just had a birthday and what a party weekend it was! Beth’s mom Cindy gives the “short version” here: “Beth is the oldest of our three girls. She was born in October of 1984, before cell phones and home computers. She started preschool at 2 and was always in a special ed classroom throughout school. She got her diploma and graduated from high school in 2004. She attends an art class, is on a bowling league and works at Little Caesars Pizza.”

But we all know, the story of a life is so much more than that.

Adventures with Beth isn’t the story of one, it’s the story of a family. And Cindy has been blogging on this site since 2009. 2009 People! So when you peruse, you can “Start in the Middle,” go Back to the Birth Story, or the recent celebration of Beth in the local production of Grease. What Fun!

As a reader/follower, I’ve enjoyed Cindy’s story-telling, her honesty, and also her photos! She’s really gotten to be great with the photos!  Cindy’s family is currently going through some big changes, and even with that she has not neglected us readers, she shares the whole story. It’s real life people and now is a great time to hop over, look around, say hi and get hooked on Adventures with Beth.

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.

Meet Joey!

Joey Solinsky, the oldest of six children, has Down syndrome. He works in a local barbershop sweeping hair and enjoys a massage every other week. Joey lives in a group home. His interests include watching old TV shows, listening to his radio on his headphones and writing his calendars.
 
It is hard not to smile when Joey is around.

Issue Monday- Employment

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The challenges of finding, keeping, liking or not-liking, and possibly finding employment again, is something every adult faces.
It comes as no surprise that adults with Down syndrome have extra challenges finding and pursuing options within the job market. Families of those with DS and self-advocates are always on the lookout for employment opportunities that are safe and rewarding.

Josh, Marcus, and Josh all have had positive work experiences, however, each of them have faced challenges with finding employment placement as well, with varying levels of current success in that area.

For example, Josh of Just Joshin’ Ya is on a roll at his new job. He’s working in a preschool in a very supportive environment that is proving to be a positive experience for everyone. You can follow along on his journey via Facebook. Josh’s mom tackled the subject of work here on the road where she explains that “Work is a Requirement.” Here’s a video from one of the teachers that he works with. What a great job!  

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Marcus talks about work here, past and future. For the present, he’s, as we say in networking circles, “Between Jobs.” Unfortunately, opportunities are few and far between. So we, at the Grown Ups and Downs’ house are considering what many other families have begun, a bit of non-traditional employment. Entrepreneurial.

Truly, it’s no surprise that this list of business owners with DS continues to grow. These folks aren’t letting closed doors keep them in, instead they take their talent to the streets!


There are many folks within the disability community who have found meaningful employment and social opportunities within the Sheltered Workshop format. The Road’s official stance on this issue is More Choices. Although we recognize that the sheltered workshop format is not appropriate for everyone, we also recognize that community employment has its own limitations for those in our community. That said, we cannot stop the changes that have already been legislated. Hopefully the local governments will take heed to the variety of needs of the families they serve. Sheltered workshops is an issue we have tackled here and here and post news updates here.

We do not underestimate our children’s abilities or their desire to be as independent as possible within our communities. This includes the joy of a paycheck, like Randal shows off here, as well as the importance of self-esteem, community, and contribution.  Here on The Road we will continue to share our stories and challenges and look forward to hearing yours as well. This is an ongoing issue that we have just begun to tackle with a mountain of both challenges and opportunities; I hope you join the conversation as we share resources that are both discovered and created.