by Corrina (Portland, OR)
Hi, my name is Corrina and I am almost 15 years old. I have an isodicentric duplication of chromosome 15q, and it makes my life both challenging and happy. I cannot talk, but my parents help me a lot and they are going to help me tell you a little bit about what it’s like to live with dup15q.
I have a really happy life. My mom always says that I am the happiest duck in the pond! I think I am happy because I have a great family and because I am really good at focusing my attention on things that delight me. I like to wake up early in the morning and go to the computer in our kitchen to spend some time watching You Tube. I’m really good at searching You Tube and every day there are lots of funny things to find! Have you ever watched clips of your favorite shows in German or Japanese? I can tell you for sure, that Teletubbies in Japanese will give you a reason to start your day giggling.
I find that most people are friendly and like to communicate with me. I love to point to things and ask people to name them. This is a great way to get to know new people. Sometimes when I am in the store and I see someone new, I will point to a picture (like the cat on a bag of cat food) and look at them with a smile. They will usually smile back and may even say “cat”. Then I clap my hands and point again and we are both happy about the cat on the cat food. I can do this for a long time and usually people will do it for awhile with me. They smile with me and it seems like their hearts are happy sharing this little delight with me. That’s why shopping is fun!
I just started high school and it’s kind of confusing. We switch classes every period and I feel like I’m always going somewhere new and having a different teacher. Because I have lots of different teachers, they all have to learn how to help me reach my IEP goals and it seems like they have a lot to learn. I am patient and I am willing to look at books or do puzzles at my desk while they are learning how to teach me. I love my bus driver and I come home from school ready to see my sisters and play with my iPad or my toys. I like my life.
There are some things that are hard. Sometimes I kind of get lost in a little dream and space out. My mom says these are seizures. They don’t hurt me but it’s weird for sure. Sometimes when my mind is really focused on one particular thing I want, I will tear up the kitchen and spill all the papers everywhere looking for it. I guess my ability to focus my attention on things that delight me has its plusses and minuses. Sometimes I have bathroom accidents and then I hear my mom sigh when she’s cleaning up. And sometimes I can tell my parents are tired when they have to help me with bathing, eating, getting dressed, going to the bathroom, brushing my teeth, and all those other activities of daily living. They didn’t think they would still be helping me with these things when I turned 15, but they are.
Really, though, I think we help each other. They help me with a million things and I help them remember how easy it is to be happy. I teach them every day that little things are fun – like how to get excited about the Pizza Hut ad that I found in this morning’s newspaper. We do a lot of walking in our neighborhood park and we usually have a great time. We just focus our attention on things that bring us delight like signing songs, or looking at the trees and the dogs, or the fun of doing summersaults in the grass. That is my gift and I share it with my family.
Thanks for listening to my story. I hope it makes YOU happy!