Down syndrome from a father's perspective.

How Down syndrome helps me make friends

Dad makes friends wherever we go.

Last week my family and I went to Philadelphia for a vacation. We had been there once before but were unable to spend as much time in the city as we would have liked. It is a great city with a lot to see and do. While we were waiting for the 4th of July parade to start I tried to keep Treyton occupied by walking around with him. One of his favorite things to do at home is to chase the birds in our yard; just imagine what he did with the pigeons in the city! Hanging with Treyton like this is a riot, he is so much fun to watch (as long as you don’t turn your head and allow him to escape). It seems that other people really like to watch Treyton as well; I often have people approach me and make comments about him, after all, he is amazingly cute. While I was walking around with/chasing him, our seven year-old daughter, Lindyn, said to Leigh Ann, “Dad makes friends wherever we go.”

A week of history and fun

We had a great time in the “City of Brotherly Love.” The heat was a bummer but it did not hold us back. We were able eat at some good restaurants, visit some interesting sites, and just have fun. We were able to see the Liberty Bell, Betsy Ross’ house, and Independence Hall among other historical places. We rode through the city and into the Delaware River on a WWII amphibious vehicle called a DUKW and went to a great aquarium where we were able to pet both sharks and sting-rays. We also had our pictures taken by the “Love” statue and went to the 4th of July parade. It was a good time for our family.

Adjusting to life after Down syndrome

Moving through a city like Philadelphia as a family of six can be interesting. Not to mention, all of us have fairly strong personalities so we tend to add some color and excitement wherever we go. Treyton fits right in with the rest of us; sometimes I call him “Treyton the Tornado.” For example, after viewing the Liberty Bell we decided to get some lunch at the Independence Visitor Center. We grabbed some drinks and sandwiches and then sat down at the tables in the open area. After taking a couple of bites Treyton was already out of his chair and circling our table. He was up on the window ledge pointing and making signs about something he saw an then the next second he was on the other side of the table by the brochure rack. A moment later he was looking at us from over his shoulder to see if we were going to stop him from sneaking off.

That is how most things go with Treyton, he is non-stop motion. I have found that when we are in public places people seem to enjoy watching him. He is certainly a cute kid and is also what I call a “creative thinker.” He will find things to do and play with that you would never have imagined. I also think people are curious about the way he communicates. Even though most of Treyton’s signs are not ASL signs, it seems to be clear to people that he uses sign language. For a kid that doesn’t “talk” he never shuts up! His hands are always busy signing and as much as I am ready for him to use words I know I will miss his signs.

Treyton is amazing which is why I understand the attention he draws from strangers. I understand it but I am not necessarily used to it; there are times when it still takes me a little off-guard. Leigh Ann is also amazed by The Legend Known as Treyton but we both know that some of the attention he gets is because he has Down syndrome. That is one of the things we are most concerned about for Treyton. We want people to see Treyton for who he is and not just the Down syndrome. There are way too many negative stereotypes about individuals with Down syndrome that people could use to pigeon-hole him and hold him back. It is because of this that I can feel a little conflicted at times. I do not mind talking about Down syndrome with people because I know that Treyton is helping to break the mold but he is so much more than a diagnosis.

Keeping it real

The reason Lindyn made the comment to Leigh Ann about me making friends was because a man approached me before the parade and asked if Treyton had Down syndrome. When I confirmed the man’s suspicion he stated that he had a 36 year-old son with Down syndrome. He mentioned that when his son was 18-months he needed open-heart surgery. (This is something I am so thankful Treyton has not had to endure.) When they took his son into surgery they told the man that there was a very good chance that his son would not survive. It was such a different world back then. I am so thankful for the advances in both medicine as well as general perception of people with Down syndrome. Yet, there is still a long way to go.

I think another reason that Lindyn was compelled to make this comment was because of the doormen at our hotel. We got into the city earlier than expected and arrived at the hotel about an hour before we could check in. Leigh Ann and the older girls went to scout out some shopping while Lindyn, Treyton, and I hung out in the lobby. I am sure we were something to watch. Treyton was up on the couches then down under the table, over the stool and then trying to mess-up what Lindyn was doing. A minute later both Lindyn and Treyton found an area that had an incline for them to run up and down. I am pretty sure everyone there understood what was going on. I was a dad in charge of keeping to young kids busy and I was in survival mode.

One of the men working that day approached me after a little while and began talking about his 12 year-old son that has autism. He mentioned some things about his son and was really enjoying interacting with Treyton. We did not have a lot in common except for the fact that both of us have children with intellectual disabilities. I suppose that is enough common ground. Like the man on the street that approached me about his son, the doorman was compelled for some reason to make a connection.

The brotherhood of disability

One of the things I noticed very early on in my Down syndrome journey was that it feels like you are headed into the great unknown. Even if you are lucky enough to have friends and family that try to help and understand, you are still headed into new territory. The men that approached me know that feeling and by connecting with me we all were able to experience a little community. It is kind of like what I called The First Church of Cracker Barrel in another post. Those of us impacted by a disability are certainly in the minority and it does help to know there are others that can relate to our experiences. This is why groups like the Down Syndrome Association of West Michigan are so important, they help to bring people like us together.

I refuse to let myself or Treyton be defined by Down syndrome, BUT, I cannot deny that it has impacted me. My life is different now. Different is just different, it is not inherently good or bad – there is a choice involved. I choose to use it to be a positive force in society, what will you choose?

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.

    Rob – Thank you! I am so proud of you. MOM

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