Category Archives: Resources

Life After High School – New Online Courses for Adults with Down Syndrome

The Road We’ve Shared has launched a new project. New online courses for adults who have Down syndrome are designed to support socialization and learning in adulthood.

Two online courses are set to begin October 1st in coordination with the beginning of National Down Syndrome Awareness Month. Stephanie Holland, founder of The Road We’ve Shared (The online community for parents and caregivers of adults with Down syndrome), and “The Road” Scholars online learning modules, has created courses that she believes will appeal to a large audience of adults with Down syndrome. She bases this on her own experience.

“My son, Joshua, (30 with Down syndrome) has been a fan of the WWE (World Wrestling Entertainment) and musicals of all types since he was very young. I’ve often thought that it would be nice for him to have someone to talk to about his interests.  As we’ve met more families on the internet and at different conferences we’ve found that they seem to be popular throughout the community.”

Holland, who holds a Masters Degree in critical disability studies and focused on teaching and learning at the undergraduate level, is building the new project based on specific goals:

  • Allow self-advocates to be the experts
  • Provide opportunities to form friendships based on common interests
  • Design course materials that allow for a wide spectrum of abilities
  • Create an environment of understanding 
  • Support continued learning into adulthood
  • Utilize free and low-cost internet-based resources to keep fees to a minimum

Allow self-advocates to be the expert –  As adults, we all have our own hobbies and enjoy sharing our knowledge with others. By focusing on hobbies and interests rather than academic subjects, we allow students to be the experts and build on their self-confidence. The courses are also “gamified,” to allow students to earn digital badges for completion of different tasks.

Provide opportunities to form friendships based on common interests – Adults with Down syndrome can become isolated and lonely once they leave the public school system. (Usually at age 22).  Social media helps bridge the gap but there are few resources designed specifically for the Down syndrome population.

Design course materials that allow for a wide spectrum of abilities – Like the general population, adults with Down syndrome have a wide variety of skills. The course materials center on video with limited text to allow people with different levels of intellectual ability to participate.  Tasks that require reading and writing can be completed with minimum support from a caregiver.

Create an environment of understanding –  While we do support full inclusion of adults with Down syndrome in the wider community, we recognize that as adults, we may choose to have a circle of friends that understand common issues. The courses will provide a safe space for those with Down syndrome to meet and form relationships that may continue after the course is finished.

Support continued learning into adulthood – Course activities are designed to be fun and educational. Each course includes opportunities for students to practice important skills like communication and self-expression. Each week students will complete the course work on their own and attend a “virtual classroom” meeting.

Utilize free, internet-based resources to keep costs down – Course fees are kept at a minimum to allow those with fixed, disability benefits, and lower incomes to participate. Scholarships and discounts for group enrollments are also available.

Registration is now open for the first two courses and the group encourages the community to offer suggestions for future courses.

For The Love Of Musicals“For The Love Of Musicals” –  Begins October 1st – runs for six weeks.

Do you love musicals? During this course, we will talk about some of the great musicals that have appeared on Broadway and in movie theaters. From Funny Girl to Annie, Grease to Shrek! The Movie, we’ll cover lots of ground in six weeks. We’ll sing along, have some fun, and learn a few things by sharing our favorites with each other. (Enrollment: $21.00) For more information please see “For The Love Of Musicals – Parents and Caregivers Guide.”

Let's Get Ready to Rumble“Let’s Get Ready to Rumble” – Begins October 1st – runs for eight weeks.

Are you a WWE superfan? Join us to talk about and celebrate everything that the WWE Universe has to offer. (Enrollment: $21) For more information please see “Lets Get Ready to Rumble Parents Guide.”


Over the Rainbow“Over The Rainbow” – free mini-course on The Wizard of Oz, and adaptations (The Wiz, Wicked, Muppet’s Wizard of Oz). Explore the software environment and examples of course design before enrolling in a paid course.
All courses powered by Moodle and available on The Road Scholars.



Down Syndrome History in Film – Filicide

Today’s film is a difficult watch. It touches on an aspect of our past and present that we don’t talk about much – what happens when elderly parent caregivers get sick and there is no plan in place for their adult children.

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Behind The Scenes Tuesday – Disability & Media

In our final look behind the scenes of Down syndrome in media we’re going to acknowledge some of the people who work hard to make sure that people with disabilities are represented fairly and accurately in all aspects of media.

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Responding To The Community – Born This Way at the 321 eConference

When Born This Way aired on the A&E Network, it prompted mixed emotions from the Down syndrome parent community.  Strong emotions. I pondered long and hard about why those emotions came to the surface, and how we could help bridge the gap between parents who loved the series for the awareness it provided and those who experienced a level of grief because of what they saw. The “Born This Way – Building Support Systems Track” is a result of that search.

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Why I LOVE the 321 eConference! Knowledge is Power – & Giveaway!

321 eConference

Part of being a parent is learning what you need to know in order to support your children. When something like Down syndrome is involved there’s much more to learn. Access to information can be very different from family to family based on a multitude of reasons.  The 321 eConference levels the playing field a bit by providing access to experts at reasonable prices.

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NCCJD – Advocating For Justice in the Intellectual Disability Community

There is no shortage of opportunities for us to help create change in our world today.  We all have our reasons for why we choose to support (or not) a particular issue. When it comes to advocacy, we are usually motivated by causes we identify with.  If we can picture ourselves or our loved ones being affected by a certain problem, we’re more likely to invest our own time and energy to fix it. What about the issues that we don’t allow ourselves to connect with? Who fights to fix the problems most of us just don’t want to acknowledge?

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Tragic, But Never Justified. The Need for Planning is All Too Real

A tragic story is being shared on social media today.  It involves yet another parent who decided to take the life of their child with special needs.  In this case, a beautiful 19-year-old young woman was murdered by her own mother. It is being reported that the mother “felt that she was the only one who could take care of” her. While, if we’re honest, many of us have felt this way at some point, it doesn’t excuse such a horrific crime.  We may not be able to prevent such events from happening, but for those of us who wish that we could do something, I suggest we make more of an effort to help parents get the resources they need to plan for the future.

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321 eConference Update

By: Stephanie Holland
321eConferenceMarch 21, 22 & 23

Online conference – no travel involved

Living, Learning & Leading for a Global Impact on the Down Syndrome community.

Sessions on Adult Issues

We are so excited for the 321 eConference this year!  Starting on World Down Syndrome Day ( #WDSD15 ), there will be three days of learning, sharing, and advocacy !

We here on The Road are super excited because this conference has a diverse line-up of sessions geared toward parents and caregivers of adults who have Down syndrome!  So far, we have 14 different sessions that focus on adult issues, including a keynote address from Patti Saylor on the progress that has been made by #JusticeForEthan.

This is just the beginning of a new source of information that will address our needs through virtual education with 321eLearning.   If you have ideas for sessions you would like to see – even after the conference – feel free to email me!

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Guardianship Tips – What Happens When You Move?

So, you’ve gone through the process of getting guardianship of your adult child.  What happens if your family moves out of state ?

The answer to that question may depend on the states involved.


The Uniform Adult Guardianship and Protective  Proceedings Jurisdiction Act

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