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When we first received our son’s Down syndrome diagnosis in August of 2011, we were devastated, terrified and lost.

During a routine anatomy scan, the technician noticed an abnormality in our son’s heart, so we were sent for an immediate fetal echo. It was then confirmed that he had two separate congenital heart defects (ASD & VSD).  We were encouraged by the pediatric cardiologist to have an amnio if we wanted to know for sure if our son had Down syndrome. Down syndrome, I thought? How? All of my blood tests, nuchal screening, sonograms had been well within the ‘normal’ range. It was impossible? Wasn’t it? We decided to have the amnio. Within a 24-hour period, we learned that we would be having a son to add to our family full of daughters, that he would need open heart surgery sometime within his first six-months of life and that he would be born with Down syndrome.

To say that it was a lot to process is an understatement. I quickly realized that we had a huge learning curve to overcome before the time came to meet our little guy. I wasn’t sure where to start, but I knew that random internet searches would likely cause more worry than comfort, so I started with the only organization I had, sort of, remembered hearing about, the NDSS.

The first thing I saw on their website was this statement:

The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.

I thought, “Wow, an entire organization committed to the VALUE, ACCEPTANCE and INCLUSION of people just like our boy. Maybe this won’t be so hard after all.” I then clicked through the New & Expectant Parents section, Local Support, and Resource section. The knot in my stomach began to give a bit and I researched on. Over the course of the next 20 weeks, I learned that Down syndrome did not mean the end of our familial happiness, that it didn’t mean our son would remain a ‘forever child.’ The possibilities were endless and I became determined to give our son the same opportunities that we have strived to give our other children…the opportunity to reach his FULL potential.
The months following his birth were spent in and out of the hospital, fighting to keep him healthy, fighting to get him to gain weight in order to endure his impending surgery. Those seven weeks felt like years, both wanting his surgery to be over and wishing it wasn’t necessary in the first place.  Carter had his open heart surgery at the impossibly young age of 7 weeks and a week later was at home and thriving. It was time to start our life with our new bundle.
We became very involved in our local Ds community and starting revving up the troops for our first Buddy Walk. The Buddy Walk would be our first experience as part of a much larger community, our first opportunity to surround ourselves with people who understood what a gift we had been given, and our first opportunity to see what life ‘may’ look like years down the road. We were pumped. I recruited a team of friends and family to walk with us and I set my mind to fundraising. The response from everyone we knew was overwhelming.  It touched us all to know that so many people were rooting for us, for Carter. We were “Carter’s Crusaders.” The money kept pouring in and, before I knew it, it seemed that we had raised more money than I ever thought possible. In fact, we learned we’d raised so much money that there would be a gold star with my name on it the day of the event. I thought, “A gold star! I got a gold star for Carter!” The day was magical, amazing, and everything I had hoped it would be.

Fast forward to this year.

A few months ago. I read a story about a young man with Down syndrome in Maryland, who had gone to the movies with a caretaker to watch “Zero Dark Thirty” on January 12th of this year. His caretaker left him inside the theater to retrieve the car. He decided he wanted to the see the movie again so returned to a seat in the empty theater. An employee of the theater asked him to leave; he didn’t, so security was called—which happened to be three off-duty deputies with the local department—who physically removed the young man from his seat, handcuffed him behind his back, and threw him to ground, where he died. I literally had to read the story over and over again to process what I had just read…he died over a movie? How is that possible? How can that happen? It did, and that young man was Ethan Saylor.
I became obsessed with trying to contribute in any small way that I could in helping his family get justice. All they have been asking for is an independent investigation. Sounds logical, right? It’s exactly what I think any parent would want. I also immediately thought of the NDSS. I thought, they must know, they must be doing something to help this family. This case has everything to do with human value, the value of this man’s life (a man with a diagnosis of Down syndrome), human rights, the right of every person to feel safe at the movies, in a mall, everywhere.  Surely the group claiming to be the national advocate for people with Ds is speaking up, I thought.  I kept searching for a statement from the NDSS, a call for action a call for community mobilization. A month and a half later, I found something.
February 21 – The first thing I read on the NDSS website regarding the case:  a press release from F.R.I.E.N.D.S., the local Ds organization in Maryland that was founded by Ethan’s mother. I couldn’t get past this part of that statement: “We have been in the past, and will continue to be, strong supporters of the Frederick County Sheriff’s Office.” This release from F.R.I.E.N.D.S. went hand-in-hand with a statement from the NDSS: “NDSS stands with our affiliate in Frederick County, Maryland in their response to the tragic incident involving Robert Ethan Saylor.”
The next thing included this statement: “NDSS is determined to see to it that necessary and comprehensive actions are implemented to ensure tragedies like this never happen again.” Wait, no mention of an independent investigation? Yes, we should work to ensure this never happens again, but it happened. Where is the call for justice for this family?
March 27 – “The ultimate goal of this collaborative effort will be to create a training program that can be easily accessed and flexible enough that all law enforcement and first responders nationwide can participate,” says NDSS President Jon Colman.” STILL no community mobilization, still no push for an independent investigation.
April 10 – Finally, a letter to the Superintendent of the Maryland State Police asking for an independent investigation. BUT, still no call for community mobilization.
April 23 – an Action Alert was sent with the contact information for someone in the DOJ – the incorrect information for that person.
April 24 – “Subsequent to our alert on Tuesday, April 23rd, we learned that the DOJ has heard the concerns of NDSS, NDSC, and our constituency. DOJ remains deeply concerned about the situation. We are confident that our efforts will yield a positive outcome, therefore, we no longer need emails and calls directed toward the DOJ’s Office of Civil Rights. We will keep you posted with updates and when timely advocacy is needed.” Wait, what? Now we’re being asked to stop trying to contact the DOJ because “they have heard our concerns” when the contact information we were given went nowhere? How is it, that in one day, without our messages reaching anyone at the DOJ, they heard “our concerns”?  I’m curious, does the NAACP send out calls for NO ACTION updates on issues that affect the community? Does GLAAD?  Does AUTISM SPEAKS?
End of April – “Our statement focused on the need for training of law enforcement personnel to be able to diffuse situations in which they come in contact with an individual with a disability, who may not respond in a way that the personnel are familiar with or have seen before.” Wait, where’s the piece about an independent investigation?

Ethan’s story still has not been picked up by major news organizations.

Even after the story came out on April 30 that he suffered unexplained injuries:

The autopsy revealed Saylor had bruises and abrasions on his face and body. And another injury: a fracture to cartilage in Saylor’s throat. Experts say it’s an unusual injury to see in a choking case. A forensic pathologist not familiar with case says the injury happens from some kind of force.
I enjoy reading the “My Great Story” pieces on the NDSS website.  I enjoy reading the news stories about the families that are fighting so that their daughter can be a cheerleader, or stories of teens with Down syndrome being crowned prom king or queen.
But not all stories about individuals with Down syndrome are “feel good” stories or have happy endings. Does that make them less deserving of coverage from our national organizations and national news outlets? I would argue these stories are MORE important, and where our collective attention within the community should be focused—on righting the wrongs that befall people with intellectual disabilities EVERY SINGLE DAY. Certainly the HOMICIDE of a young man, who went to the movies and died while crying out for his mother, deserves our attention. Certainly we can all spare a few minutes of our time to reach out and help get justice for Ethan:
Yesterday I received an email from the NDSS asking my help in beta-testing their newly improved Buddy Walk site for this year. In response, I wrote:

Thank you for including me on this distribution. However, I am very conflicted about participating in this year’s walk. I am very disappointed in the way the NDSS and the NDSC has handled the Ethan Saylor tragedy. There has been no community mobilization around the death of this young man. The silence of our national organizations is so disappointing to me that I honestly haven’t decided if we can, in good conscience, participate this year.

I received the following back:

 I totally understand where you are coming from and would never try to convince you to do something if it doesn’t feel right. You know I would love to see your family’s gorgeous faces, but only if they are smiling and feeling in solidarity with what we represent as a national advocate. I would very much like to separate the joys of the Buddy Walk program and the Ethan Saylor tragedy.  I am sorry you feel this way about NDSS. I am really proud of the efforts of my colleagues that have been at the center of all of the conversations and have worked really hard to keep all of our communications about the topic balanced and professional.  Please take as much time as you need to think about it. Registration will remain open until event day.

I can’t “separate the joys of the Buddy Walk program and the Ethan Saylor tragedy”—and frankly, the suggestion is just one more example of NDSS being out of touch. Communications “about the topic” (Ethan’s death) have not been balanced and professional from an organization which seeks to be the national leader in serving individuals with Down syndrome.  Is it balanced and professional to not demand justice for this family?
“Please take as much time as you need to think about it. Registration will remain open until event day.” – having slept on it, I believe I’ve had all the time I need.

This year, my family will not be walking in the NYC Buddy Walk.

I cannot, in good conscience, support the NDSS as the same organization I thought it was a year ago. I hope to rejoin the Buddy Walk next year, and I hope that something changes between now and then. I hope the NDSS starts living its mission:

The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.

Two out of three doesn’t cut it for me.

Stacey Calcano
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  1. Great post. Why aren’t these organizations up in arms? My daughter has DS – what if the same thing happens to her one day? I would expect all these organizations to be fighting along with me to find out what really happened and make sure it didn’t happen again. Thanks for sharing – I’m going to be making some calls & sending some emails tomorrow!

    1. thanks, Shannon! That’s exactly how I feel about it all too.

    2. Stacey Calcano says:

      Yes, Shannon….why aren’t they up in arms…

  2. What a very strange response from the NDSS. It doesn’t make sense at all. I can understand how you feel and why you aren’t participating this year. It’s too bad for them because it sounds like you were a big financial contributor! Maybe you can start your own foundation!

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