Step Up For Down Syndrome
On Saturday, October 13 the Down Syndrome Association of West Michigan is having its annual “Step Up for Down Syndrome” walk. This walk is an opportunity for members of the community to raise money to support the association as well as get together to celebrate National Down Syndrome Month. I have provided more information about this walk on the STEP-UP page. There are hundreds of walks just like this that take place across our country each year.
Each person that attends this walk/celebration is motivated to participate for his or her own personal reasons. Some that join in do not have a personal connection to this chromosomal disorder but simply recognize the need to help advocate for this cause. Those individuals are amazing! If that describes you please accept my appreciation; you provide a model we all should follow. However, I imagine that most people at the celebration are like myself.
Four years ago I did not know this walk existed. I did not pay attention to the needs of those with Down syndrome until my own son was diagnosed with the disorder. Now it is personal; I walk for Treyton. I walk because I know there are people in this world that may make assumptions about my son simply because of his diagnosis. I walk to help the world see that my son, like others with Down syndrome, have a lot to offer and deserve the same opportunities as every other person deserves.
The boy who cried wolf
This past weekend was “Zone Weekend.” Our second daughter, Taylor, is an accomplished swimmer that has qualified to swim in the US Swimming Zone Championships. We left the house on Thursday and did not return until Sunday night. It is a big deal and we are very proud of how hard Taylor has worked to get to where she is. However, it is also a big deal to involve our entire family of 6 in this endeavor. And, just so we are clear, Leigh Ann did advise against taking the entire family. We decided to approach this by dividing and conquering – we took two cars on the road trip to Kenosha, Wisconsin.
Taylor, Treyton, and I left a couple of hours before the rest in my Honda Accord. Taylor needed to be at the natatorium for team pictures as well as a practice with Team Michigan. It did not make a lot of sense to require the entire tribe to be there for this part of the weekend and having two cars makes it a lot easier to go back and forth between the pool and hotel. Taylor sat with me in the front of the car and I had Treyton’s car seat positioned in the middle of the back seat so that both of us could help him if needed. Treyton is a good little traveler as long as you have a few essentials. We had some books, a few of his stuffed animals, his iPad, a snack, and a drink. He was ready for the road trip.
Treyton looked at his books for a while then he played with his stuffed animals and soon moved onto his iPad. As he repositioned in his seat the iPad fell to the floor so Taylor picked it up for him. If I were able to read his mind I am sure that he thought something like, “Cool, look what I can make Taylor do!” After Taylor gave him the iPad he seemed to have developed a problem holding onto it because he dropped it 3 more times. Finally Taylor stopped giving it to him so Treyton changed gears and started playing with his stuffed Big Bird which he started dropping as well. When no one picked up Big Bird for him he started his new trick of fake crying. When Taylor heard the sound of crying over the music coming from her headphones she instinctively picked up the toy which in Treyton’s mind was a clear sign that the game was back on!
Take a look at this video to see what Trey’s fake cry looks like in action. I took this video at the Cheesecake Factory where we stopped for lunch on our way home. Sunday was Taylor’s 13th birthday so we wanted to stop someplace a littler nicer than normal as a celebration. It was a fun lunch and as you will see, Treyton decided it was time to get some more attention than he was getting so he “turned on the fake cry.”
The escape artist
This past weekend is the first time that we really noticed that Treyton is strong enough to pull a hotel room door open. He is not able to twist a door knob and pull the door but our room had lever handles and Treyton did not have an issue with those at all. He was also very aware of anyone knocking on our door (he would drop what he was doing whenever someone knocked and run to the door). If you were not paying attention he would try to sneak out with the person at the door. We had to keep on our toes because that boy is quick and quiet!
If Treyton made it to the hallway we had another worry; he figured out how to work the elevator. At one point Leigh Ann was watching him run up and down the hall (a favorite activity of his in the hotel) when he ran into the elevator waiting area. As he went out of sight Leigh started walking that way to find Treyton walking onto the elevator by himself! He may not have known where the elevator was going but he sure knew how to make it go.
At one point Leigh Ann was helping to change Treyton out of his swim suit because I had just taken him to the hotel pool. She took off his swim trunks and wet swim diaper and then went into the bathroom to grab a dry diaper. I was in the room with Treyton but I was not paying attention because his mom had him. I heard the door shut but didn’t react right away because I thought it was Bailey walking into our room. When I looked up and didn’t see her I jumped toward the door realizing that the boy I call trouble had just escaped. When I opened the door I was thankful to see him standing right outside our room looking at a tall man. The man seemed a little surprised to see Treyton in the middle of the hall in his birthday suit! If he knew Treyton he would have been less surprised.
Don’t fence him in
Harry Connick Jr. has a song about a man that liked to roam and be free called “Don’t Fence Me In.” After this weekend I feel like that song fits Treyton like a glove. This was very evident when we arrived at the event site so Taylor could check in. There was a large gymnasium with about six basketball courts. There were basketballs and volleyballs lying around that kids were playing with. At first Trey was pretty mellow because I had him contained in the umbrella stroller. But I could tell the desire to play with the balls was really grabbing hold of him so I let him get out of the stroller. Treyton loved it and I got a workout!
Trey was a madman. He was nonstop motion for the next 30 minutes. I tried to keep him interested in throwing and kicking the ball back and forth with me but that only lasted for short periods of time. The problem was when we wanted to run and kick or throw the ball. There were a lot of kids shooting baskets and kicking balls throughout the field-house so I had to make sure I was one step ahead of him at all times. I was sweating like crazy when we were done.
That is kind of what Treyton is like in a restaurant. When he is in a high-chair or booster seat things seem to go smoothly. However, when he is just sitting on the seat itself the kid cannot be contained. He goes under the table and then up the other side of the booth or he may try to crawl out and make a break for it. When you grab him he laughs out loud and will sit back in his seat for a few minutes and then is at it again. The last morning we were at the hotel Treyton decided that bacon tasted better when he ate it under the table. Sometimes you have to just let it be.
A boy is a boy, with or without Down syndrome
Treyton is so much like my other kids that at times I can’t believe it. I would never have guessed how much his personality would resemble that of his sisters’. When given the chance, kids with Down syndrome are really just like kids without the extra chromosome; if you give them a chance and get to know them you will realize this as well. I walk because I want to help destroy the stereotypes that exist about people with Down syndrome – even the “positive” stereotypes. People with Down syndrome are individuals and should not be lumped into a group just because of a diagnosis. Please join with me and help create a world where Treyton is given the opportunity to develop and use his gifts and talents as God intended. Click here to learn more about the Step Up For Down Syndrome Walk and learn how you can help Treyton’s Posse reach its goal of $5,000.