Down syndrome from a father's perspective.

Down syndrome did not cause the death of Ethan Saylor, ignorance did.

The death of Robert Ethan Saylor haunts me.

The fact that very few people seem to have heard about the death of Robert Ethan Saylor haunts me. How many other deaths make the major news channels? A LOT! Think about all of the special interest groups that we hear about on a daily basis yet the young man who had a cognitive disability continues to be ignored.

The black cloud overhead that begins to swirl.

I began the week thinking about some of the concerns I have about prenatal diagnoses of Down syndrome but was sidetracked in a most unpleasant way. As I was gathering a few facts and opinions I came across a statement that really sent my head spinning. As my thoughts started to slow down I realized I needed to write something about Ethan Saylor. However, it proved to be a lot more difficult than that little statement made it sound.

Have you ever been so upset you simply could not form the words to express yourself? Probably not. I am sure you are a lot more composed than I am so maybe you witnessed something similar in one of your children or maybe a neighbor kid. For me there were not any outward indicators of this state of mind but there was (and still is) a lot of internal unrest.

In Memoriam

Did you know that 32 years ago May 9 was a Saturday? It was the day before Mother’s Day that year. I realize that is a crazy fact and even though I am terrible with facts like this one I know that it is true. I know it is true because it is a day I will never forget. On May 9, 1981 I road my bike down our country road and into town to buy some baseball cards at the convenience store. On the way back my friend Dale was hit and killed by a motorcycle. I was 8-years-old and in the 2nd grade. I can still picture it. What really strike me now is that thought of how his parents feel. If I still remember this vividly what is it like for his parents? It is not natural for a child to die before the parents.

This Mother’s Day, May 12, 2013 will be the 4-month anniversary of the death of 26-year-old Robert Ethan Saylor. On January 12, 2013 Ethan went to see a movie on January 12 with a personal care assistant (PCA). After the movie ended the PCA went to get the car while Ethan remained in the building. Ethan went back in the theater because he wanted to see the movie again but failed to purchase another ticket. When he would not leave the movie theater staff called mall security (off-duty sheriff deputies) and as a result of his treatment, Ethan was killed.

After only 4-months I cannot imagine how much sadness Ethan’s family is experiencing. This terrible, tragic, senseless death was completely avoidable and those responsible need to be held accountable. There have been a lot of blog posts about Ethan’s death but there are two that I know of which are more comprehensive than most.

Treyton, you make me smile – BIG TIME!

Attached to our refrigerator door is a small piece of paper where my 2nd grade daughter (Lindyn) wrote, “Treyton, you make me smile big time.” Finding a note like that makes a parent so happy! Lindyn is not the only one that smiles more because of Treyton.

Last night as I was driving home from work I began to think about what I was going to see when I walked in the house. Leigh Ann is busy running the house or trying to get a quick break. The two oldest girls are usually either at practice or doing homework in their rooms. Lindyn is usually running around the neighborhood with her friends, but not Treyton. Simply the thought of seeing Treyton when I walked in the house made me feel good.

When I walk in the door I can almost always count on hearing Trey exclaim, “DAH!”, with a laugh and a look of excitement. He then will either stop whatever he is doing and run to me laughing and wanting me to pick him up or he excitedly tells me about what is going on. Keep in mind that he is non-verbal so when Trey tells a story it is quite something. It is filled with motions, signs, vocal tones, and every aspect of his being. I wish I was better with words so I could convey what an amazing experience this is. I love it.

Do you think that it how Ethan’s parents felt about him when he was 4? I bet they did. Treyton is not Ethan and Ethan was not Treyton yet they share the same diagnosis. They share a disability that apparently cause people to presume their lives are worth less than others. Well I am here to say that is BULL SHIT!

This is not the time to rest.

As I stated, I was planning on writing about some I had about prenatal diagnoses of Down syndrome. I really began thinking about this when I read Andrew Solomon’s book Far From the Tree and have not stopped thinking about it. As I began to get my thoughts together and gather a few facts I was sidetracked by something I read. It was something that coincided with what Solomon had talked about as well as other articles I read.

This greater acceptance coexists with an ongoing desire to prevent the birth of children with intellectual disabilities. Geneticists continue their search for prenatal tests to detect Down syndrome sooner and less invasively. Early test results are desirable because it is assumed that after receiving a positive diagnosis of Down syndrome, the next logical step is to terminate the pregnancy.
Rachel Adams, Salon.com, April 28, 2013

To provide a little context I want to point out that the author has a son with Down syndrome. She understands the value of a person does not depend on the presence or absence of a diagnosis. However, I do feel an undercurrent in society that disagrees. I don’t believe that opting to get tested during pregnancy is any indication that a person has any disregard for human life; that is not the case at all. Yet I think it is hard to argue against the notion that society in general views the life of a person with a cognitive disability as something less that others. This makes me sick to my stomach.

What do I tell Treyton?

At four-years-old, Treyton’s biggest concern is when he can go outside and play next. However some day I am going to have to explain to him why Ethan Saylor died as well as why didn’t anyone seem to care? Think about all of the different special interest groups in our society and pick one. What if a person that fit under that title were killed don’t you think there would have been more coverage in the news? I am not indicating that because any other group should not be viewed as important, they all should, including those with Down syndrome.

We need to continue to trying to raise awareness any way we can. Do what comes natural to you, just make sure that no one can forget that Ethan Saylor died over the price of a movie ticket and at the hands of ignorant people. His death was avoidable and its only connection to Down syndrome is that the disability gave his killers an excuse to disregard his life.

I don’t care what you do from this point on to bring awareness about Robert Ethan Saylor’s senseless death, just do something. If you have not already signed these petitions that could be your start.

Petitioning Doug Gansler, Attorney General of Maryland

Petitioning Sheriff Charles Jenkins

 

Rob Arnold has been married to his high school sweetheart for almost 19 years. Together they have three daughters and one son. He earned his bachelor's degree in General Business from Grand Valley State University as well as an MBA in Strategic Management from Davenport University. He enjoys reading, hunting, scuba diving, and spending time with his family.
  1. Crystal Staley

    I have been thinking about Ethan’s mom Patty all week. She will not have her son to celebrate Mother’s Day with this year. I cry hard, ugly-face tears until I’m a blubbering mess. Like you, I do what I can when I can to raise awareness for Ethan’s murder because I feel it’s the least I can do. I hope that it makes a difference but I’ve been feeling a bit discouraged lately and that hurts my heart. But I’ll keep doing it because he deserves justice.

    • Rob Arnold

      It is amazingly terrible. Add on top the fact that most people don’t even know about it. I am so baffled by the lack of media coverage.

  2. Anna

    I am going to share your post. You are bang on and it makes me sad that nobody seems to care.

    • Rob Arnold

      I am honored that you want to share this post. Feel free!