Down syndrome from a father's perspective.

It’s up to you and me. #justiceforethan

A RELUCTANT ACTIVIST

I was not planning on having a son born with Down syndrome but I wouldn’t change it for anything. However, there are times when I am either more sane or less insane that allow me to see that there is more to this journey than I had expected.

When Treyton was born I didn’t anything about Trisomy 21 other than your basic stereotype perpetuated by society. It was that stereotype that compelled me to make a promise to my son. I promised him that I would do anything possible to remove the unjust barriers that would try to hold him back – to keep him from being the man God created him to be.

I stand by my promise today with even more resolve than I had four years ago. I know a little more today about raising a boy with a cognitive disability, especially one that has “a look.” I now see more clearly that even well-intentioned people make assumptions about by son. I am getting a better idea of what it is going to take to create change, to form a society where Treyton as well as others with disabilities are valued for the people they are. It is going to take a village (hey, that may be a good title for a book!).

What it boils down to is this, with the birth of every child with Down syndrome the parent is forced to answer a question. There is a critical choice to be made that parents of “typically developing” kids don’t need to make. The parent needs to decide if s/he is going to be the activist their child so desperately needs. If the parent makes the choice to advocate for their child they are guaranteed a future of a lot of hard word. But if that parent does not step-up to the challenge, if that parent chooses not to advocate for his/her child who will? This same choice extends to brothers and sisters, grandparents, aunts and uncles, to anyone in that child’s life.

Robert Ethan Saylor was worth more alive than dead.

The death of Ethan Saylor has created a new sense of urgency for many parents like myself. As we seek #justiceforethan we are also seeking justice for our own children. I hope that Ethan’s mom feels support from this but I worry that she could feel like her son is being used. Ethan should not have had to die so that we could realize how urgently change is needed.

I wonder if some well-meaning person tried to comfort this grieving mother with words such as, “God has a plan to use Ethan’s death” or maybe, “now people will see on those with Down syndrome are discriminated against.” I don’t know what the words were or even if they were spoken but I think there is a good chance they were and the thought of that reminded me of something.

I was reminded of the countless well-meaning individuals that have said to my wife and I that God had a plan and that He gave us Treyton for a reason. I believe that God will use Treyton in big ways but why did He pick my kid? Why was Ethan the one that had to die? Why not someone else’s child? That is the question no one ever tries to answer. I think all these outsiders need to learn to keep their mouths shut and give us room. I believe each parent needs to come up with their own answer to the why question.

I admit that it was Ethan’s tragic death that gave me a new sense of urgency. It did. But at the same time I am reminding myself and hope to remind you that Ethan should not have needed to die for this. That his life was far more valuable than his death. But now, let’s sure as hell not let him die in vain. Get off your ass!

The organizations.

Earlier this week I stumbled read a blog post that caused me to think. That, by the way, would be the best thing someone could say about something I write. I am not looking for you to agree or disagree but to think and hopefully act on it. This post by Walkersvillemom was called “With F.R.I.E.N.D.S. Like These…” and was written with a lot of emotion. Check it out.

The post originally caught my attention because I equate the organization “F.R.I.E.N.D.S.” with seeking #justiceforethan. As I read through it there were some very surprising things. I am not saying any of this is truth or that it is false, I read this as one person’s perspective on something I didn’t know anything about. I will say I sure can’t seen any benefit for making this up. Regardless, what this article caused me to think about was first that it takes all types of people, you know, a village. This writer is doing what is natural to her, what she feels passionate about.

The second thing that hit me was that we cannot rely on an organization to do what needs to be done. One of the things I try to teach my children is that you cannot control what another person does or does not do, you can only control your own actions and reactions. The Down syndrome organizations that I am familiar with seem to all be fairly good at basic knowledge and support type activities. I attended a webinar this week about the impact of Down syndrome on the parents’ relationship sponsored by the NDSS. It was good. I am thankful for that type of support.

Access to things like this webinar is helpful but it is not changing society as a whole. I don’t think they should do away with these things but add it them a larger emphasis on activism, changing the way society views people with Down syndrome. Combating the mindset that the life of a person with Down syndrome is at best something to be tolerated and at worst something to eliminate. This is where they have fallen on their faces.

It looks like it is up to you and me.

So, what did you choose when your child or grand child was born? I read another blog post that stirred something inside me this week. “The Silence Frightens Me” by MardraSikora.com makes you think about your own sense of urgency about how society views kids like Treyton or young men like Ethan. The author compares the number of signatures on the petitions seeking #justiceforethan to a petition about a Disney princess character. Trust me, the numbers suck.

So, are you up for it? Your child needs you to be up for it. I don’t know what you need to do but you do. Like I have said before, “Do what comes natural to you, just do something.” The reality is that most of what you need to do will be part of everyday life, things like your interactions with neighbors, teachers, doctors, etc. There are also the big things like seeking #justiceforethan. Again I ask, “Are you up for it?”

 

 If you don’t advocate for people with Down syndrome who will?

 

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. Stephanie

    Thanks for the compliment! You’re right though, it’s time to stop hoping others will stand up and just do it ourselves. I guess what really had me upset was that this used to be our group. Patti and I along with some other amazing families used to get real comfort and support from that group. But it’s time to move past it – and I thank you for helping me see that. My latest feeling – what feels right to me now – is working on creating a new non-profit that does some of the more…’rabble-rousing’ and legal defense for civil-rights violations. I think the nationals have a purpose, and this kind of activism may be outside those parameters. (https://www.facebook.com/DownSyndromeJusticeLeague)

    Also, thank you for putting into words some of my own worries about ‘well-meaning’ people and using Ethan’s death.

    As long as we continue to inspire each other to be our best, we will serve our children well. Thanks again for a very thought provoking post!

    Stephanie

    • Rob Arnold

      Stephanie,
      Given your and Patti’s involvement in the organization I can only imagine how it feels when they are not doing much to help get some justice for Ethan. Also, I really do have mixed feelings about using Ethan’s death as this rallying call and I am sure that many people are experiencing that same personal conflict. It is a sort of “Catch 22.” On the one hand we cannot change the tragedy that took place. But on the other hand it happened to a real person. I never met Ethan and from the few stories I have read about him he sounded like a great person. I hope you and others that were close to him know that I for one do not take it lightly when we use his name and tragic death do so with reverence for the life that was taken far too soon.

      Sincerely,

      Treyton’s Dad – Rob Arnold

  2. Crystal Staley

    Great post Rob. I have been having mixed feelings lately also—feeling like I was using Ethan’s death in a way I certainly wasn’t meaning to, but wondering if it was coming across that way. I still want justice for his death and will still push for it–because at the heart of is all is a police brutality case, plain and simple (not to come off a police hater because I’m not). For me I advocate for my son the best way I know how. He’s only 11 months old so I’m still new on the journey but I look up to the ‘veteran’ parents like you and Stephanie that blog about your experiences. But I defenitely made my choice to be my son’s biggest advocate!

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