Down syndrome from a father's perspective.

Down syndrome adventure

When I look into Treyton’s bright blue eyes everything seems good. I don’t I think of Down syndrome or IEP’s or doctors. Since the very first day, Leigh Ann and I have felt like Treyton’s eyes are magical. At times it even seems like his eyes pull you in. I don’t know how to put it into words other than to say that his eyes are full of life and when you gaze into them you get a sense that Treyton has a very important role to play in this world. But then, you realize that you have lost focus and had better figure out what path of destruction Treyton the Tornado has just created.

Life with Treyton is a true adventure.

I wish everyone could see what I see; the little things he does each and every day that completely take you by surprise. Sometimes I wonder if it is just that I am getting older and realize how quickly kids grow up so I have learned to treasure the little things more. Maybe my age has required me to develop a defense mechanism where I laugh at some of the things he does because it wouldn’t be too much work to try to rein him in. Maybe it is because I know in my head that he has Down syndrome and is supposed to be cognitively delayed that I enjoy what I call his “creative thinking.” I am not sure what it is but there is never a dull moment with Treyton.

At a ripe-old age of 3 1/2 it is clear that Treyton loves life and wants to experience everything he can. He has a thirst for knowledge and is acutely aware of what is going on around him; he is always watching and studying. If you have seen the movie Jurassic Park you will understand what I mean when I say that Treyton is my little Velociraptor; he systematically checks for weaknesses in the fence. It is not that he wants to be naughty, it is more that he loves cause and effect. Just watch him when he works his iPad. Treyton will teach himself how different games work simply by trying one thing and seeing what happens. He will then try something else, take a mental note of what that did and eventually he figures out the game.

This trial and error learning process can be clearly seen when you give him a bouncy ball. Which, if you ever need to get some work done, is a great way to keep him occupied. Trey loves to bounce balls on the wood floor in our kitchen/dining room area. At first he would simply throw it in the air, watch it bounce a few times and then chase after it. Then one day it accidentally landed on the table and hit a glass or plate or something. I don’t know if he liked how it sounded or what but he soon transitioned from simply bouncing the ball on the floor to trying to bounce it so that it would hit things on the table or counter. He is not trying to break things but if they do break he finds it kind of exciting I think. If he gets bored with trying to hit things on the table he may opt to go with a big bounce and try to get the ball to land on top of our cupboards. In fact, I think there is still a ball stuck up there because that is where Treyton points whenever you ask him where the ball is.

It is normal to see Trey running around the house. Often he is being chased by the dog or chasing the dog. When he ran around the corner into the kitchen the other day, Leigh Ann and I didn’t think anything about it until we heard the sound of glass breaking. The kid just chucked a Christmas ornament on the wood floor! I am not sure what was more surprising – the shattered ornament or the fact that either one of us could have stopped him but just let it all happen right between us. The reality is that I think Trey thought it might bounce and wasn’t intending to destroy the ornament like he did. However, I do know that he liked the result and would certainly do it again until I made it clear to him that it was not acceptable. The problem is that I happened to love that look of excitement on his face. His impulses are innocent to begin with but he also knows that he was not supposed to be taking stuff off from the Christmas tree.

I could go on and on and on with stories like this because there are new ones happening everyday. One of the funnier examples of Treyton observing the world around him occurred with our dog Beckett. If you follow Treyton’s Posse on Instagram, Twitter, or Facebook you have likely seen a number of pictures of Treyton and Beckett together; they are becoming best friends. Anyway, the other day Trey and I were in the backyard playing fetch with Beckett. After a bit the dog got sidetracked by something and then decided he needed to stop and take care of an itch. Treyton must have thought that the way Beckett used his back foot to scratch his ear was cool because he sat down on the ground and tried to pull his own foot up and use it to scratch. I am telling you, Treyton’s curiosity is when of the biggest gifts I am ever been given!

For a kid that doesn’t speak, Treyton never stops talking.

I have said this before but will repeat it. I think teaching your baby to use sign language is one of the best things you can do. Babies want to and are able to communicate long before they can form words. Baby signs allow your child to communicate which reduces frustration for both you and the child. At the same time the child is developing language skills that will help him/her later when they are able to speak. In fact, the research shows that the kids who use sign language prior to being able to speak end up further ahead than those that do not start with signs. I am not sure what we would have done without Treyton’s signs.

Just the other night Treyton and I were in the basement. He was playing with his trains and I was doing something on my tablet. He had a busy day and I could tell he was getting tired when he got by attention by saying “Dah” while doing the sign for dad. He then repeated the dad sign followed by the signs for upstairs, sleep (bed), cookie, drink, Barney, and bus. I knew right away what he wanted but I wasn’t ready to comply with his request. When I didn’t respond right away he moved closer to me and made sure to make eye-contact with me and repeated the string of signs but this time will a little more earnest. When I repeated to him what he was signing he knew I understood. You know that the connection is made because his face lights up with a smile and he shakes his head “yes” with a little giggle. So we both headed upstairs to my room where we laid on my bed and watched the episode of Barney where the kids ride on the bus and sing the song “Wheels on the Bus.” Oh, and of course I made sure that Treyton had a drink and a couple of cookies as well. The kid makes me laugh, he sure knows what he wants.

It is exciting to see the progress Treyton is making with speech. We know he has the vocabulary and cognitive ability to form sentences but there is some type of disconnect when it comes to forming words. Treyton struggles with childhood apraxia of speech (CAS) which is where the brain has difficulty sending the correct message to the body parts that form sounds, syllables, and words. He knows what he wants to say but the disconnect prevents the words from forming. He is making progress thanks to his mom, teachers, speech therapist at school, as well as an additional speech-language pathologist he goes to at The Center for Childhood Development.

Some of the things you will hear him say around the house are “dah” for dad, “beck” for Beckett or dog, “da” for yes, and sometimes “bay” for Bailey. However, Treyton will occasionally shock you with other words that he seems to pull out of left-field and he will enunciate those very clearly. When he does unleash these surprise words it seems like, for a minute, he forgot that he couldn’t talk. It is crazy and exciting. Treyton’s language struggle is a big deal and something that weighs very heavily on his mom and me.

Truthful words.

At the time Treyton was born I was serving as a board member at the Christian school where my kids attended. There was another man who served on this same board with me who had a cousin with Down syndrome that lived with him as he was growing up. I believe this same man also spent some time either volunteering at or working at some institution that helped people with developmental disabilities. Either way, he said something to me after a meeting that has stuck with me. He told me that raising a child with special needs will bring with it lower lows and higher highs. I am starting to understand what he meant.

I love having Treyton and everything that it involves but it is a lot of work and can be lonely; we have to deal with things that most people don’t ever even consider. Ask Leigh Ann, we experience some pretty tough low-points. However, we also get to be very happy and excited about things that I know other parents take for granted. The real challenge is making the choice to focus on the high-points and not let ourselves get stuck in the pits of struggle. It is not easy but when you look into those beautiful blue-eyes things always seem better.

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.