Category Archives: A to Z Blogging Challenge 2015

Z – Alzheimer’s Disease

Z for Alzheimer's Disease on The Road We've SharedI could use a play on words and explain the reason this last post in our A to Z Blogging Challenge is late by saying something about forgetting to do it.The truth is that it’s a difficult subject to write, or even think, about.  For those of us with adult children who have Down syndrome, the worry about Alzheimer’s disease is always present.

Early onset Alzheimer's disease and dementia in adults with Down syndrome

Part of our series of infographics on aging and Down syndrome

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The Yin and Yang of Disability Services

The Yin and Yang of Disability Services on The Road We've Shared
Usually the private and public sector operate on extremely different levels with different agendas.  Private companies are guided by the bottom line (for profit) or their mission and board (non-profit). Government entities function within a larger bureaucracy, bound by rules and red tape.
We can debate which one is “better,” but the truth is, when it comes to providing the best care for our loved ones, we need all the help we can get.

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X – Xenocide

By Mardra Sikora

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Today we are using a word found in the urban dictionary, a term derived from fiction, however the threat is still real.

I confess, I have scrapped and re-written this blog about 10 times. It’s not easy stuff to write, to share, or to face. Which may surprise you to hear as I have written and written and written about this. No, it never gets easier.  

All I can hear right now is the line from the movie Princess Bride, “No. Is too much. I sum up.” 

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W – Work that Needs Doing

By: Stephanie Holland
Work on The Road We've SharedThose of us with adult children know that we, as a society, have come a long way in terms of advocacy and services for people with intellectual and developmental disabilities (ID/DD);  but we also know that we still have a long way to go before our children are fully accepted and understood.
Today we’ll look at what kinds of projects are on the table right now, and where we might want to go next.Our community has been celebrating a victory lately: the battle to get the federal ABLE bill passed took almost a decade.  Parents and advocates from the Ds community fought in the trenches with people from many other disability groups.  That kind of teamwork and dedication is necessary to accomplish the big tasks. The National Down Syndrome Society was among the leaders of that charge, and they have a well thought out plan for what comes next. During the 321 eConference, Ginny Sessions Siller, and Heather Sachs talked about the NDSS agenda for 2015.  The NDSS National Policy Center is heavily involved in passing and tracking the progress of ABLE bills at the state level.  Both the NDSS and the NDSC have a system where you can sign up for alerts when support is needed from the community. 

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V- Village of Random Acts of Kindness

By Mardra Sikora

In some ways, we in the Down syndrome community are our own village.

V - Village

This last March 21st organizations and individuals reached out to unknown friends and presented them with random acts of kindness. A lovely introduction to our village.

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The idea for WDSD RAK was conceived and designed by the “big groups” then disseminated to individuals and local groups to do and facilitate however they wanted. That’s the beauty of what made this really work. Everyone could take a hold and do what felt right for them.For example, the lovely Big Blueberry Eyes Family – they really made a day of it. Others gave quarters with signs at laundromats, or chick-filet, or Starbucks, and on. Josh and Joey had a lot of great input on Random Acts to share.

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U – United Nations

By Susan Adelman

U - United Nations

In its essence the United Nations (UN) is a family, a family of nations. And at the heart of its millennial missions is the family. As a result, for 2015 an emphasis on the family motivated the UN to invite families from its member nations to take part in the issues affecting them and the world. Humanity is diverse, and the UN recognizes that diversity is not just about skin color. Different abilities paint the landscape of humanity as much as color and gender. How we, as a society, treat our most underserved is reflective of who we are.

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T is for Three Twenty One eLearning

Three Twenty-One eLearning on The Road We've Shared
How do you get current research, answers to questions, and access to experts out to people in the community?  Can you do it without the costs associated with travel?  How do bring physicians, researchers, teachers, and families together to learn from each other without having it cost a fortune?

The answer is 321 eLearning! 

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S- Special Olympics!

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We are less than 100 days away from the Special Olympics World Games and Los Angeles is getting ready to host this great event that will be televised on ESPN and feature athletes from around the world.

In an interview with Spain’s leading national newspaper ABC, Tim Shriver, Chairman of Special Olympics tells us that Special Olympics is the way for those least valued to heal the world.

“Our athletes are Olympic athletes. Many people who come to Special Olympics end up crying. Something inside of us opens. Something so emotional that you can’t avoid. You say to yourself “My fears are gone, I only see a human being competing and it teaches me everything that I know.” It’s amazing!”

Speaking of the World Summer Games taking place in celebrity-filled Los Angeles this summer: “We will demonstrate that the real stars in life are those that, in a simple way, trust human beings in their heart and look to the future with optimism.”

On the future: “We are introducing Unified Sports to schools. If you grow up like this, as an adult you won’t see differences, only what comes from inside. It’s not a bad goal, right?”

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R – Ruby’s Rainbow – Help From Our Friends

By: Liz Plachta – Co-founder of Ruby’s Rainbow

Ruby's Rainbow on The Road We've Shared“Together we can do so much.”

That should be the Ruby’s Rainbow mantra. In fact, in thank you’s, Facebook post and everything in between I have many times used the quote from Helen Keller “Alone we can do so little; together we can do so much.”  I believe this with every fiber of my being…and have seen it first hand in our organization.  Let me back up a little…

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Quality of Life – Global Down Syndrome Foundation

by Michael Bryant of Global Down Syndrome Foundation with a few notes by Mardra Sikora

“Learn from yesterday, live for today, hope for tomorrow.” – Albert Einstein

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As recently as 1983, a person with Down syndrome was barely expected to live into adulthood. Three decades later, most of the people living with Down syndrome are adults, and have the potential to live long lives, with many expected to live to 55, 60, and beyond.

These facts are a source of pride for the Down syndrome community, reflecting how far we’ve come in so short a time. The reasons behind the dramatic increase are many, and they each show a major step forward:

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