Down syndrome from a father's perspective.

The Serenity Prayer and Down syndrome

  • backyard serenity

I have never been to Alcoholics Anonymous (AA) and by the grace of God alone I am not an alcoholic – the disease does run in my family. However, I no longer drink alcohol (even though there is a barrel of Maker’s Mark bourbon with my name on it in Kentucky). Life got to a point for me that I had too many reasons to take a drink. Don’t get me wrong, I don’t think alcohol is the problem; I have just realized that I have a weakness in my genes.

The fog of war meets pop-culture.

The fog of war.

I like to think that I make clever connections and references to pop-culture that help to make me a good writer, or at least help add interest to what I am saying. I also like to think that I am a supportive husband and loving father. What can I say? I am a legend in my own mind.

Regardless, the heart of this post comes from the depth of struggle and internal conflict in which parents of kids with special needs wallow much of the time. It comes from the “fog of war.”

My wife and I spend a significant amount of time talking about how we can help Treyton develop and maximize his potential. Part of the reason for this is the harsh reality that parents of kids with Down syndrome must deal with - the IEP (individualized education program). Quite often these discussions can take on a fairly serious tone as the two of us (both strong-willed) want the best for our son but have different ideas of what he needs.

This fog that I refer to comes from being surrounded by “the gray.” For parents of kids with a cognitive disability like Down syndrome nothing is black & white; we seem to live in a world of gray. Nothing is certain. Even the professionals use terms like, “I think,” or, “we believe.” Don’t get me wrong, I am not blaming the therapists or teachers, I am just pointing out reality but the reality tends to suck.

Pop-culture

Twelve-step programs such as AA have been part of pop-culture for a while now. In fact, it was an episode of Seinfeld that first piqued my interest in The Serenity Prayer is most often associated with AA. In fact, whenever I hear the word SERENITY I can hear George’s dad yelling, “Serenity now, serenity now!!”

One day as I was driving alone in my car I somehow made the leap from Seinfeld to Down syndrome. From, “SERENITY NOW!” to seeing wisdom to be able to discern between my son’s human nature and the cognitive disability he was given.

I am not trying to be sneaky about my personal beliefs and faith in God. That is not my goal with this blog or this post, but I do think there is some power in this prayer. If you are not the praying type maybe you can use it as some form of meditation or relaxation. I don’t know. Just read the first paragraph.

God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.

The first step in helping someone is understanding what they need.

Have you heard the saying, “The first step is a doozy!”? It applies here. One of our struggles as parents is deciding which things Treyton can do but chooses not to, which things he can do but chooses to do incorrectly to get a reaction, and which things he truly cannot do.Treyton knows what to do with car keys.

All of my kids have what I call “street smarts.” From very early ages they all learned how to work you over and having an extra-chromosome did not change that fact. I could tell you story after story of things Treyton has done that really make you wonder how he learned that. For example, like all kids Treyton rides in the backseat of the car and usually directly behind the driver’s seat. Yet, the first time I let him crawl around the front seat as I cleaned the car out he motioned that he wanted the keys. When I handed them to him he immediately leaned around the steering wheel and tried to put them in the ignition. It is stories like this that cause me to be very careful about what I let Treyton see me do, he is always watching.

Another example is one that Trey’s teach gave us. His class was doing a section on insects so during one particular session he was counting the spots on the backs of pretend lady bugs. After progressing through the bugs at the table he began to sign/motion to his teacher that there were more lady bugs. She thought he was remembering the one that was in a surprise box but in reality Treyton had seen a lady bug on a shelf that the teacher had forgotten about. The teacher was impressed that he made the connection between something he saw before and what he was working on at that moment. Treyton is stink’n smart! Yet there are some things that just don’t seem to click, or at least we are not sure.

Peacefulness, composure, and insight.

There are certain things about having a child with Down syndrome that you won’t be able to change. I don’t know where you are in your personal journey, we all take it at our own pace, but there are some realities we are stuck with no matter what. Now imagine if you could be at peace with that. I am not talking about resignation being but a true sense of peace.

However there are things we can do to help our children. We have resources available to us today that didn’t exist ten years ago. We can be thankful for this help. With the composure and boldness to take advantage of what is available you and I can help our children in ways parents only dreamed about a few years ago.

What we need most of all, in my opinion, is the insight to be able to discern between those unchanging realities and the opportunities for growth. This will allow us to allocate our limited resources, our energy, to those things in which we can make the most impact.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
enjoying one moment at a time;
accepting hardships as the pathway to peace;
taking, as He did, this sinful world
as it is, not as I would have it;
trusting that He will make all things right
if I surrender to His Will;
that I may be reasonably happy in this life
and supremely happy with Him
forever in the next.

Amen.

Reinhold Niebuhr

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. Anna

    Knowing the difference, that’s the key. I am learning everyday.

    • Rob Arnold

      It is a tough one. We are determined not to underestimate Treyton’s abilities but we sure don’t want to be unfair either.