Tag Archives: Mardra Sikora

X – Xenocide

By Mardra Sikora


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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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.


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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Everything Starts at Home


 This week there is the Buddy Walk on Washington.  Big things are being done on the big stage.  But, what’s happening at home in your town? The local groups have their feet on the ground, working for the families of their community, helping, teaching, and reaching out.
As an example, let me tell you about the Ds group in my city, the Down Syndrome Alliance of the Midlands. As of two years ago I knew nothing, really, about what they do. So I called and…

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Finding Forever Families!

You know, for years (YEARS) I kept a bassinette in my garage, just in case someone left a baby on my doorstep. No one ever did, likely because in this day and age, it doesn’t usually work that way. (Fortunately, I should add.) Nope. Children whose birth parents are unable to provide for them are a part of a system, a system I was frankly intimidated by and afraid to be involved in.


 I have recently learned that there are so many helpful resources to enable families to adopt, and today we are going to focus on a few organizations that are ready to help families adopt a child with Down syndrome.

Through the 321eConference I listened to two adoptive parents tell about their experience and the resources available through the National Down Syndrome Adoption Network.  The NDSAN serves families in all 50 states and works to find Forever Families for children.  The NDSAN mission “is to ensure that every child born with Down syndrome has the opportunity to grow up in a loving family.”

Sometimes adoptions are arranged prenatally and sometimes the children come through foster care. The circumstances vary as widely as the beautiful families they serve. There are open adoptions or closed. There are two primary constants: The NDSAN wants to help find and make the best match between a child and a family and every child needs a safe and loving home.

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B – Bloggers Advocates


It would be a gross disservice to not include the families who advocate online by sharing their truths as part of the All Together Now collaboration here on The Road. (Of course, you may think we are partial to the blogging cause, as that is what brought us together to begin with – Fair, but not the whole story.) A question that springs up in advocacy circles is: Why aren’t there more adult self-advocates or families of adults with Down syndrome out there blogging? Sharing their world? Telling their stories? Unfortunately, this lack of voice and presence often is misunderstood to be hiding.  You know, the old fleeing equals guilt theory.

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Why We Are Still Talking About Ethan Saylor

Many of our community, when we hear the name Ethan Saylor, get a battle weary sensation tingling under the skin, and an ache that surrounds our heart. So much for “justice” and all that that implies…I know. I get it. However, I’m going to ask that you continue to read and keep talking about Ethan and I’ll tell you why.

Remembering Ethan Saylor

First, because change cannot come if people give up asking for it. Ethan’s life was too high a price to pay. Before the name Ethan Saylor came into my vision, I had no idea how unjust the system is when it comes to police accountability and inquiries. With all of the recent grand jury scrutinization, it is important that we keep talking about the need for independent investigations and how the death of Ethan Saylor at the hands of three off duty officers is not something to be swept under the rug; his life had value and those who stole him from his family and his community should be held accountable.

#JusticeForEthan must remind and rally us to hold officers accountable as we move forward. I wish I knew how to do this more concretely, but I hope if we keep talking about it we’ll find someone who can make this change. Have you read about Michael Bell and what his father has learned and done since his son was killed by police?  Change doesn’t happen in silence. Well, actually, some change does happen in silence, and it is the scariest. We cannot allow silent changes, we have to be a part of the noise. David Perry speaks to the cult of compliance , his determination to voice on this subject ranges across platforms. Ethan’s life has been one of many, too many, to be lost without consequence.  

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Oncoming traffic

By Mardra and Grown Ups & Downs

Would he like a sucker?

Today Marcus and I took the pile of annual reports  paperwork to the probate office at the courthouse.  Ooooh, sounds scary doesn’t it? Well, it is a bit intimidating, but everyone in the office has always been super nice and helpful to us. While one person was checking over and stamping paperwork with the big, official, stamp another scooted up to the counter and asked of me, “Would he like a sucker?”

I turn to Marcus, “Would you like a sucker?”

“No. Thank you.” He said to the lady as she pulls up a little “tree” of Blow-Pops and what-nots and places it on the counter. “Too old.” He said to me.

“You’re too old for that?” I asked.


I had to smile.

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