Down syndrome from a father's perspective.

Down syndrome and shared stories on family vacation.

Being part of a family involves a lot of different things to different people. And even though there are a lot of similarities between families every family operates a little differently. Families have their own traditions, common likes/dislikes, inside jokes, and often a family will have its own way of communicating; each family has its own culture. The members of a family share common experiences that make up a common story – a living, growing story.

Family vacation.

If you follow Treyton’s Posse on Instagram or Facebook you already know that the Arnolds took a family vacation to San Diego. Our oldest two girls are both in high school and with all of the “AP” and “Honors” classes they cannot afford to miss much school. However, they had winter break so we took the opportunity to flee from the unusually harsh winter we have been having in Michigan. (If you missed those images you can also find them on Flickr.)

I have some mixed feelings about using the term “vacation” when I talk about taking a trip with the entire family. Vacation implies some type of rest and relaxation so you would think that you would return feeling rested. That is rarely my experience. I could blame it on my two youngest kids (Lindyn 9 and Treyton 4 1/2) but Bailey and Taylor (16 and 14) add their own dynamic to the situation. Also, we have two distinct groups in our family because the kids’ ages. That was not something we planned; we welcomed each of our babies into our family when God blessed us with them. It was His timing.

An afternoon conversation.

treyton and lindyn on beachBefore getting married I had the opportunity to go on several vacations with some friends and there families. These were good experiences and provided the opportunity to see how other families function. One of the things that really struck me was when parents would go out of their way to fulfill the individuals desires all of the time. Now please understand, I am not criticizing them; if I were, they could find just as much to criticize about me if they wanted. Their approach to vacation worked at some level for them and is part of what defines their family culture.

As we walked back from having lunch on the pier, Leigh Ann and I willingly let the four kids walk ahead of us. We didn’t really plan to do that but we both kind of slowed our own pace which helped to create some space between the kids and us. As we walked Leigh Ann and I talked about the challenge of finding activities that all of the kids enjoyed. It seems like it is fairly easy to please one or two of the kids and at times a third but rarely are we able to please them all.┬áThe struggle to find balanced activities weighs on both of us but it is really difficult for Leigh Ann. I think part of the reason for that is her role as mother but it also has to do with personality and her own story.

However, this vacation has really helped me to see something that such an approach may be missing. By working so hard to make sure every individual in the family is doing exactly what they want to do at any given minute I am robbing them of the opportunity to learn a valuable lesson. It is a lesson that “only children” can struggle to learn. It is about putting others first, having a servant’s heart, and just being flexible. It is a lesson about first learning to listen and understand before trying to be heard and understood. It is about being part of something bigger than self. There is a lot of value to learning how to function in a group. This includes being exposed to new things, learning new skills, and simply enjoying the company of others to name a few.

As the two of us walked I tried to explain these thoughts to Leigh Ann. She agreed but we also were both aware that ideas are one thing and reality is often another. As parents we get tired. When we are tired we can drift toward the path of least resistance. The path of least resistance is not a great place to try to teach lessons. In cases like this it sure would be nice if the thought was really what mattered because we were all over that thought!

 Making it about Down syndrome.

It didn’t take long for my mind to wander and see a correlation between these observations about vacation and lessons that could be applied to how disability impacts family, especially siblings. As parents we are acutely aware of the potential negative impact our other kids may experience because Treyton has Down syndrome. It is not something any of them have ever expressed but it is a real fear we have.

There is a lot of information available in our community regarding Down syndrome and the sibling experience. I have done some reading on the subject and participated in a two-day webinar covering this topic. I am thankful for this easily available information from the many resources serving our community. But along with these vacation thoughts I am starting to see that parents can get too focused and caught up with worry about it. It is pretty natural for us parents to get caught in the cycle of never-ending hypotheticals. “What if Treyton didn’t have Down syndrome, would we have more time for our other kids? Would life be easier for them? Could we do more for them? Would they have less responsibility?”

Sure, having a child with a disability requires more time and if my boy didn’t have Down syndrome I probably would be able to spend more time with the other kids. Life may be easier, I could do more, and the kids may have less responsibility. But would that be better? How do you define better?

We all want what is best for our kids. We don’t want them to endure unnecessary hardships or have bad experiences. We love each and every child but also realize that the extra-chromosome from the one child does impact the other. Some work very hard to make sure their other kids never feel the impact in their own lives. I understand why parents work so hard at it.

But maybe we need to look at it from a different angle. Our kids have something were never had, they have the opportunity to grow and learn in ways we didn’t have the chance to do and neither do their friends. Our kids have been given a gift to see a richer, deeper, more meaningful life. Maybe instead of trying to isolate them from this reality we should put that effort into helping them realize the gift that has been handed to them. To use the gift and not waste it.

You see, when you meet an individual that has Down syndrome you need to consider yourself lucky, like you found a four-leaf clover.

  1. Mardra - Grown Ups and Downs

    Lovely and true.
    And I hope you’re rested up now, too. :)

    • Rob Arnold

      We had fun but I wouldn’t say we were rested. It was a nice break from the norm though.

      Sincerely,

      Treyton’s Dad (Rob Arnold)