Down syndrome from a father's perspective.

Down Syndrome and the Declaration of Independence

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.

Self-evident truths

This past July we had the opportunity to visit Philadelphia and see the sights like Independence Hall, the Liberty Bell, etc.  It was a lot of fun but also a reminder of the values on which this country is founded. One such founding principle is that each life is valuable, “All men are created equal.” But what about the person that gives millions to charitys or the famous athlete or what’s his name? My value, your value comes from our Creator and has nothing to do with what we do or do not accomplish.  Human value is innate and cannot be earned; my life is not more or less valuable than any other person’s life.

The spirit of competition

As parents, as humans, we can very easily fall into the trap of glorifying human performance. Victories, great accomplishments, and awards are all goods things and should be celebrated but must always be kept in perspective.

I have been involved in sports for most of my life and enjoy them very much. I think they are an important part of our culture and don’t want to give the impression that I think otherwise. Competition is everywhere in life; it is very important to teach our kids how to handle both winning and losing. We need to teach our kids to work hard to be the best they can be and hopefully they will have the opportunity to experience what it feels like to win. We need to teach them them how to be good winners just like they need to learn how to lose gracefully and understand that there is always more to life than that one competition.

Recently I was reminded that as we are trying to teach our kids these important lessons, parents can sometimes lose their perspectives and get caught up in the excitement as their child competes. As Leigh Ann and I travel around to various swim meets for our two oldest girls there is a lot of talk among the parents about their kid’s swim times. One of the things I really like about swimming is that even if a swimmer is last in a race it is possible for that to be a good race for them because they beat their personal best time but this comparison is still there.

Perspectives change

I would like to think that as I age I am gaining some wisdom; it would be a bummer to think that I am not. Either way, I am starting to see things that I had not seen before. I know that having a child born with a disability has changed me. My eyes have been opened to the undercurrents of thought that appear to be so natural and harmless yet in reality are quite damaging. I see parents that seem to float on air when their kid’s times are fast and then they drag and wonder what is wrong when the times are slower than expected. I listen to parents excessively bragging about their child’s performance and try not to allow myself to get pulled in. There is a balance that needs to be found between appreciating hard work that leads to a good performance and valuing the outcome as the ultimate factor.

Just watch T.V. shows like “Dance Moms” or that show about the toddler beauty pagents. Those are extreme examples but they illustrate that undercurrent I was talking about. You can see that a poor performance impacts these kids more than simply wanting to work harder. It is clear to me that the self-worths of the children on these shows are tied to their outcomes.

The gift I received

I need to recognize that I was given a gift when Treyton was born. Having a son born with Down syndrome has taught me to see a different type of value; I need to remind myself of this because I have been given an experience they have not had. My own daughter is really good and has been on the podium as one of the top swimmers in the state. I am proud of her, she works hard and has been given an amazing ability. However, there are days when she doesn’t do as well as she would like and I am OK. Life is good. Her value does not come from the number of medals she earns or the seconds she drops.

As a parent I need to focus on teaching my kids to work hard at whatever they do and to be the best they can be. Then let the outcome be what it is. Our basketball coach would tell us to make sure to leave it all on the court because if we did that was all the could be expected and we could be proud of our effort regardless of the the outcome. It is good to praise success and normal to feel bad (within reason) about a loss. But until our kids understand that their value comes from God they will not be able to reach their full potential. That is just one of the freedoms God offers us.

She’s enough

The other day I stumbled upon a blog post by another blogger, Gillian Marchenko, she is a mother of two little girls that are just six months apart both have Down syndrome. The title of the post is: “She’s enough: Parenting a child with “low functioning” Down syndrome.” It is worth reading so please take the time to follow the link.

The post talks about the stark contrast in the abilities of her two girls. Even though they are similar in age and both have Down syndrome there is a big difference in what each child understands and can do. But, the thing that really connected with me is when the author said, “My job is to help Evangeline meet her God-given potential. But I am not the judge of potential.” I thought that was a great point to make. Who is the judge of potential? Is one child worth more than another because of what they can do? Of course not.

Apply as needed

I don’t know what Treyton will be like when he is older. Right now it sure seems like he is going to be able to do whatever he decides he wants to do. But what if he can’t? Is that going to be enough for me? What about my other kids? What is enough for them? Is there a standard measure of what is enough or is it relative?

What about the star high school athlete destined for greatness that gets in a tragic accident and is no longer able to participate in sports. Does that make him less of a person? Valuing a person based on their output is a volatile practice that is ingrained in our culture. As parents that have been given a child with a disability we are forced to stare this fact in the face. Even though we understand that our son is “enough”, we still worry because of what others will think or how they will treat him. We are working to create change for Treyton, help us.  Help Treyton’s Posse to change the way people view others. Ask yourself, “Do I really believe that all men are created equal?”

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. Gillian Marchenko

    Hi Rob. Thanks for the link up in your post.

    You make some great points yourself here.

    Thanks for what you are doing to create change for our kids.