Category Archives: Community Updates

ShondaLand Recognizes Disability Rights

Fans of Scandal may have noticed a quick nod to the disability community in the latest episode.

We’re used to seeing Olivia (Kerry Washington) advise the President and presidential candidates – it’s what she does. But this week, (Season 6, episode 2, “Hardball”) in a flashback, we see a conversation between Oliva and Presidential hopeful Mellie Grant (Bellamy Young). The disability community is rarely acknowledged for the size and potential political power that it contains in real life. But during this episode, which reached 6.54 million viewers, episode writer Matt Byrne gives the community a shout out.

“I have you set up with a private sit-down with Chris Sterns at tomorrow’s donor breakfast.

He liked your speech on disability rights.

He has three disabled grandkids and a lot of money.

So bring it home.”

It may not sound like much – but for those who are used to being ignored it’s something worth noting.



[bctt tweet=”Thanks ShondaLand for recognizing #DisabilityRights ! #BringItHome” username=”@RoadWeveShared @ScandalABC @ShondaRhimes”]
This episode is available for viewing on the ABC website and Amazon.



Announcing! The Ethan Saylor Memorial Film Festival

We are excited to announce that The Road We’ve Shared and The International Down Syndrome Coalition (IDSC) are hosting the first annual Ethan Saylor Memorial Film Festival!

Continue reading Announcing! The Ethan Saylor Memorial Film Festival

Happy Mothers Day to Those Who Cut The Road

While we’re celebrating our own families today, I’d like to take a moment and wish a Happy Mother’s Day to a specific group of strangers – the Moms who came before us. No matter how old our children with Down syndrome are, there are those to whom we owe a debt of gratitude.

The mothers of the fourteen children represented in the landmark case, Pennsylvania Association of Retarded Children (PARC) vs The Commonwealth of Pennsylvania (1971). Their advocacy helped make it possible for all children with intellectual and developmental disabilities to receive a public education.


Moms like Mrs. Donald G. Wyman and 54 others in the “Mothers of Young Mongoloids” who fought for increased funding for NIH research in 1969. They started a letter writing campaign and managed to get 4,000 letters sent to Congress.

Mothers of Mongoloids


Women like Eve Shakespeare who believed what society told her, that institutionalization offered the best future for her daughter with Down syndrome, but took the time to bond with her as a young child. How devastating must that battle in her mind have been?



Melissa Comes HomeStrong women like Mildred Krentel who, unsatisfied with the status quo, took a chance and bought a 35-room mansion and set about creating a more home-like setting for her daughter and others like her. Melmark is still in operation today, providing services for 1,000 children and adults with intellectual and developmental disabilities.



Loving AndrewAnd women like Romy Wyllie who took the time to write about her own personal experiences raising a child with Down syndrome. Her son, Andrew, was born in 1959 and passed away at the age of 52. Their story is filled with details and records that give readers a glimpse of history on The Road.  [We’re currently discussing that history in The Road Story Club.]


And our thoughts today also include mothers like Patti Saylor and Stephanie Smith Lee, who continue to advocate for our children, even after they lost one of their own.

These are but a few of the pioneers that helped us get where we are today. There are countless others. We may not know their names, but we know that without them, our lives would be quite different.

Happy Mother’s Day to all the Ds Moms, past and present!

You’ve helped pave The Road We’ve Shared!

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.

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

Lip Sync Battle – #DsStyle

Coming in March…

Lip sync battle from The Road We've Shared

Does your loved one love music?

Have the brushes and spoons in your house doubled as microphones?

Has your loved one introduced him/herself as a “rock star?”

If you answered yes to any of the above, and you have a video camera, join us in March as we celebrate our loved ones as the stars that they are!

All ages welcome!

Get your video ready to be submitted by February 13th.

Stay tuned for more details!

New Year, Moving Further Down The Road

Happy New Year

If there’s one thing I’ve learned over the years, it’s that there is truth behind the saying, “Man plans, and God laughs.” Still, at the end of every year mortals attempt to plan out the next 365 days.  As parents of children with special needs we’ve done our share of goal setting…

“I will complete X with Y% accuracy Z% of the time”

So, in the interest of tradition, productivity, and accountability I’m attempting to set goals for 2016 on The Road.

Continue reading New Year, Moving Further Down The Road