MEET CONNOR

Hi.  My name is Connor Genteman.  I am 10 years old and have Down Syndrome.  My Mom says the medical term is Trisomy 21.  I don't know what either of these things mean or why I should care. I have fun at home watching my videos, having Mom & Dad read books to me and playing with my toys. (Mom says I make too much of a mess with my toys and I should put them away but I like them just where they are.). 

I also really like hanging out with my Dad. He takes me to the car wash every weekend. The people there know me and I get to hand them the ticket and put the tip in the box.  Dad also takes me for rides in his big truck around our neighborhood. I also like sitting in his Mustang and pretending I'm driving.  

I really like going to school too. I have fun being around the other kids and learning new things with them. I can't do exactly everything they do but I still have fun and just like to watch sometimes.  I learn a lot of things that way. 

I hear grown-ups say that I am developmentally delayed and can't do some things that normal kids do.  What is normal?  All I know is that I need a lot of repetition learning how to do some things and then when I am ready, I just do it. Like talking, I can understand what people say but I don't say anything back. I am practicing and use some sign language. One day I will start talking. I just don't feel ready yet.  

Every week Mom takes me to visit different therapists. One of them is teaching me how to chew.  Right now my Mom makes my meals with puréed foods (that means food you don't have to chew before swallowing). She also gets my lunch ready every morning before school so my teacher can feed me.  This is all because I was born with a heart defect. It was a big problem because I only had enough air and energy for breathing but not for eating. So the doctors put a tube down my nose to my tummy for getting food.  I didn't like it and would try to pull it out. Later I got a G-button on my tummy so food could be put in from a tube right into my stomach.  

My heart was repaired by Dr. Tam at Cook Children's Hospital when I was 2 months old. My parents say they were not sure I would survive the surgery. I don't remember it. 

My Mom also takes me to visit other doctors with Cook Children's, like my pediatric cardiologist, pediatrician and the doctor my Mom calls a Gastroenterologist.  I see him a lot.  My Mom talks to him about how I am doing eating and drinking without having to use my G-button and any tummy troubles that I am having. 

I think I have a good life and don't see how I am very different from other kids.  I like to laugh and have fun. I have good days and bad days, and sometimes get mad or sad. There are things I like and don't like.  My Mom and Dad say I am becoming a big boy and can do more and more things by myself. I can't wait to learn more.  

Thanks for coming and hope you enjoy the car show

Connor