Down syndrome from a father's perspective.

#Toast4Ethan | Celebrating a life that ended too soon.


wenty-seven years ago today a little boy was born; he was named Robert Ethan Saylor. At that time there was no way to know that exactly 26 years and 3 days later that same little boy would die at the hands of law enforcement. His crime? Nothing. He was suspected of walking into a movie without paying but that was later proven to be untrue. Even still, is the price of a movie ticket reason for someone to die? Ethan, I never had the privilege to meet you but you have changed me, forever. And because of that I ask that anyone reading this raise their class and give a #Toast4Ethan.

Candle in the wind.

If you have been reading this blog on a regular basis you know that I like music and Elton John is an important part of my music history. As I thought about Ethan and how his life tragically ended at the age of 26 I immediately thought of Elton John’s song A Candle in the Wind that he wrote as a tribute to Marilyn Monroe. The song was later adapted in honor of the tragic death of Princess Diana and I believe it applies to Ethan.

If I’ve learned one thing in my first year as the parent of a child with Down Syndrome, it is that I FEAR the police. More than I fear snakes. To be honest, I am losing respect for this profession with each passing day.

Facebook Post by Little Bird’s Dad

I don’t know much about Ethan but there is one story his mother told that I really love. At one point she was in the hospital and Ethan came to visit her. He loved his mother very much and did the only thing he could do which was pray to God. Ethan prayed in earnest, he poured his heart out to God and everyone that was near his mom’s hospital room. You see, Ethan felt the need to take a shower and as he showered he sang. Ethan sang what was on his heart. He sang his prayer to God, a prayer of healing for his mother.

Ethan’s death scares me.

I was introduced to Ethan through news reports as well as the writings of fellow bloggers. They all talked about a 26 year-old man with Down syndrome that died after 3 off-duty police officers wrestled him to the ground because they believed he entered a movie without paying for a ticket. They ignored the tell-tale physical markers that all point to the fact that the young man had Down syndrome and therefore had a cognitive disability. The more details I uncovered the more angry and unsettled I became.

One of the more unsettling aspects for me was how little news coverage Ethan’s death received. Think about how much news coverage is often given when there is a different skin color involved or gender identity or religion. I am not saying those are not important, they are, I am saying that the death of someone with a cognitive disability should be every bit as important and the apathy surrounding Ethan Saylor’s death is terrifying!

What about my son?ethan saylor survival strap

I am not going to lie, right or wrong, a big reason I am so concerned about this is that it could be my kid someday. Jisun at refers to this as “selfish advocacy.” She is not condemning this sort of thing but rather explaining its reality.

I wear a survival strap on my right hand. The strap has a blue and yellow ribbon on it and was designed to honor Ethan Saylor. I wear it to remember Ethan but also as a conversation starter. I want people to notice it and ask me about it. I want to tell others about Ethan both to honor him but also to help pave the way for my son. I don’t want Treyton or any other person with Down syndrome to suffer the same unjust and violent death.

When I tell others about Ethan I do want his life and death to be honored but I also want to prevent the same thing from happening to my son, I don’t know how parents move on from losing a child. I know they do but it seems like such tough loss. There is another reason as well. I want to be able to look my son in the face and let him know that I am working to change the way the world sees individuals with cognitive disabilities. That I am working to create a world where every life is valued.

So today I give this #Toast4Ethan. I give a toast to his life that ended too soon and ask all of you reading this to never let his death be in vain. We cannot change what has happened but we can let what has happened change us.

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