Down syndrome from a father's perspective.

Down syndrome is not the issue, prejudice is.

I let my mind drift as I thought about the possibility of having one wish, the opportunity to change one thing in this world. What would you choose? Like most things, my answer to this question would have been different a few years ago, before I became the father to a son with a cognitive disability. Today my answer, my one wish, is sure to have something to do with Down syndrome.

Liebster Blog Award Question #8.

If you could change one thing in the world, what would it be?

Having a child born with Down syndrome was nothing I had ever planned on or hoped for. Also, this diagnosis is only one aspect of who Treyton is, it is not what defines him. However, I could not imagine him any other way. When the nurse handed me my little boy in the delivery room and I looked down all I could see was perfection. Treyton was and is exactly how he is supposed to be.

The reason I would not use my one wish to eradicate this disability is that I don’t think the extra-chromosome is the real problem. Treyton is a happy, loving little boy just like any other kid. The real issue is the prejudice in this world that will be forced upon him, that is what I would do with my wish. I would rid the world of the prejudice that says people with Down syndrome are something less. Less capable, less intelligent, less human.

It has a lot to do with attitude and perspective.

To be honest I am a little afraid of the possibility of causing someone to feel guilty if they don’t see this the same way as I do. Treyton is 4 years-old and I have had that long to adjust to this reality as well as see that life is good even if your child is diagnosed with Down syndrome. However, you may not be at that point yet and I want you to know that it is okay if you have negative, resentful, or some other type of feelings. Everyone has their own way of processing the diagnosis.

When your perspective or way of thinking about an issue changes in a radical way it is called a “paradigm shift.” A paradigm is a framework for viewing and understanding the world around us. For example, if you believe in a loving God that created the world and everything in it you will interpret daily events differently than a person that does not believe in God.

Paradigm shifts can happen on a smaller level as well. Maybe it is an issue at work that you cannot seem to solve. You decide to take a step back and approach it from a different angle or maybe you get an outsider to describe to you how they see it and as a result you are able to see a solution the previously eluded you.

Far From the Tree

At the heart of Andrew Solomon’s book Far from the Tree you find a question of paradigms. At its most basic level Solomon’s book deals with the contrast between an illness paradigm and an identity paradigm. The illness paradigm is connected to terms such as defective and broken but the identity paradigm see value in differences and offers acceptance.

I cannot look at Treyton and think that he is defective. The kid is kick ass! Treyton is the best Treyton that anyone could be. Maybe it is going to take longer for him to learn things. Maybe he is going to learn differently than me. Maybe he won’t be able to do all of the things other people can (I doubt that is going to be the case).

There is a lot that I don’t know but in reality these are the same things I don’t know about my other kids. They all learning a little differently, have differing abilities and interests. What they don’t have is someone prejudging them because of a label/diagnosis and set of physical characteristics.

The real problem is prejudice.

It is hard to deny that prejudice did not play a part in the death of Ethan Saylor. At the very least it was cause for his assailants to regard him with less respect than they would have someone without a cognitive disability. History is full of terrible examples of prejudice: slavery, segregation, denying women the right to vote, etc. At some level, all of these different types of prejudice are based on ignorant stereotypes.

Treyton is happy and healthy. He is a lot of work and a lot of fun. He can be kind and obedient and he can raise a lot of hell. Treyton is my son and I love him just the way he is. At times I do worry about how others may treat him which is one of the reasons I started this blog – I want to help destroy the stereotypes that hold people like Treyton back.

Below is a quote for Solomon’s book that I believe may add a little depth and color the perspective I tried to offer in this post.

We drifted to the question of cure. “If you talk to people very involved in the Down syndrome community,” Tom said, “you’ll find a range of perspectives on whether looking for a cure for Down syndrome is a legitimate objective. There are people who won’t even talk about that, because to talk about a cure is to diminish the value of the people who are alive with Down syndrome. Some would even say that if they could wave a magic wand and make their child normal, they wouldn’t do it.” I asked Tom what he would do if he had the magic wand. “If I could have David who he is but not have Down’s syndrome?” he asked. “I would do it in a minute. I would do it because I think, for David, it’s hard being in the world with Down syndrome, and I’d like to give him a happier, easier life. So for David, I’d do it. But the diversity of human beings makes the world a better place, and if everyone with Down syndrome were cured, it would be a real loss. The personal wish and the social wish are in opposition. The question is whether we collectively learn more than we hurt.”

Solomon, Andrew (2012-11-13). Far From the Tree (Kindle Locations 4599-4607). Simon & Schuster, Inc.. Kindle Edition.
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.
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  2. Little Birds Dad

    Well written post, as always.

    I’m going to have to pick up the book u reference; our 5 month old is our introduction to Down Syndrome and I am realizing I have an opportunity to define my own paradigm about DS.

    LBD

    • Rob Arnold

      Follow the link in the post to read more about that book. It was a tough read for me but if you read the review I wrote you will see how I recommend approaching the book if you are not going to read every word of it. Also, the author gives some graphic details about his own life as a background to the book – it is not for the easily offended.

  3. Pingback: The Down syndrome diagnosis can conjure images of hope and joy for new parents. | Treyton's Posse