You can find joy in the world of Down syndrome.
As an advocate for my son with Down syndrome I try to write about the challenges and issues that we face together. For example, my last post was about individualized education programs, I have also written about oppressive language, medical issues, parenting challenges, etc. There are a lot of important things to write about that are serious in nature but I also think it is important to stop and focus on the fun.
Yes my son has Down syndrome and just like my other kids it is work but also a lot of fun. My goal today is to share a few of the things I think about when I think of Treyton. These are things that make my entire being smile.
Despite being non-verbal, Treyton never stops talking!
I cannot express how important sign language has been to Treyton’s development. I believe that without the ability to use signs Treyton would be experiencing a huge amount of frustration. Aside from the developmental benefits, sign language has been a lot of fun.
When we started out we focused on the Baby Signs program but also used some of the information from Baby Signing Times (both are great programs). Things were simple – eat, drink, hot. But as Treyton’s vocabulary expanded we had to try to keep up. We worked to learn the proper signs, either the ASL sign or at least the Baby Sign. That was a struggle.
Thankfully one of Treyton’s strengths is that he adapts well. When you combine our struggle to keep up with Treyton’s adaptability you get something I would have never realized; you get an amazing picture of Treyton’s personality. As Treyton worked to communicate he would use signs that made sense to him (sometimes you could see where he was coming from but others you would have no idea). In one sense it is a form of sharades, Treyton acts out how things appear to him. This picture into Treyton’s personality is nothing less than a true gift. I love it!
If I had the time I have a bunch of stories I could tell about his signs. I could talk about how he told me his mom was running outside in the cold, or I could explain how he would kind of “throw” a sign when we was telling you about something in the other room. But then I thought about one of the signs he no longer uses.
Before we moved him out of the crib we would have to go into his room to get him when he woke up. There were times when you thought he was awake so you would go in his room but it looked like he was still sleeping, face-down. When you tried to sneak back out of the room his arms would stretch out in front of him and then his fingers would move in a type of “give me” motion that he used to ask to be picked up. I don’t know if I am doing a good enough job or not of describing the scene but this is certainly one of those memories I will hold onto.
Treyton and Beckett, Trouble 1 and Trouble 2.
We have always had a dog since Treyton was born. At first it was Petey, he was a gentle older dog. I remember playing fetch with Petey in the house when Treyton was just a month old. I would throw the toy then wrestle it away from the dog. If I held onto it Pete would try to get it from me but if I set it on Trey’s belly Petey would step back and just stare at the toy.
As Treyton began to walk it would not be unusual for Trey and Petey to play together for an hour. When Beckett joined our family this past summer, as a tiny puppy, it was clear that Treyton was going to have a lot of fun. There are times when I will tell people that we have either two toddlers or two puppies because that is what it feels like with Treyton and Beckett.
Trey will tease Beckett and then later you will hear Trey yell, “BEHHH” because the dog was stealing a toy or maybe a taste of Treyton’s snack. The two have formed a type of symbiotic relationship at the dinner table. Treyton tends to be a little messy so Beckett has taken on the job of cleaning up Trey’s mess. However there are times when the dog get too enthusiastic about the job and we need to put him outside.
It was a time like that when Trey decided it would be fun to tease the dog. He climbed out of his booster seat at the table and then sat down with his bowl of macaroni in front of the sliding glass door – he was eye-to-eye with Beckett sitting on the other side. When Leigh walked back into the kitchen area she found Treyton laughing as he smeared his lunch on the glass and Beckett scratched and licked from the outside. The kid makes me laugh!
Watching a movie is an interactive experience for Treyton.
The other day we relocated where we keep our DVD movies and in the process I found the movie Toy Story 3; I knew Treyton liked that movie. In an attempt to get Trey to settle down for a little bit I thought he would enjoy watching the movie on the big television screen (he usually watches it on his iPad.) I was right about him enjoying it but wrong about the settling down!
I had a lot of fun watching Treyton as he watched the movie. We sat across from each other in matching reclining chairs (Treyton made sure I put the foot-rest out on my chair just like his). I didn’t realize how well he knew the movie until then. You could tell he was aware of what was going to happen because his body would tense and he would get a look of excitement on his face and laugh or make other loud sounds. One second he was standing on the the chair then he was back down pointing and making sure I was watching the movie as well.
I had the privilege of having a similar experience and catching some of it on video when I went to “Circus Day” at Treyton’s school. The first thing they did at Circus Day was to gather on the rug in front of the television to watch a video about the circus. There were animals, clowns, acrobats, etc. – everything from your typical circus including a lot of music. Well it was the music that did Tretyon in. It grabbed him and he just had to move around! I love how full of life this kid is. Take a look at this video, it will make you smile.
Living the dream.
Our friend Lauren likes to use the phrase “living the dream” when someone has a good time or something good happens. Well I have to say that Treyton can make an ordinary situation seem like living the dream. Sure, raising a kid with special needs is hard but life is good with Treyton. It is a tiring type of good but I am thankful for the joy that has entered our house in the form of a little boy with Down syndrome.