Nathan

Age: 11
Duplication: 46,XY,dup(4)(p16.3->p15.31::p15.31->p16.3::15.2->qter)

Lives in: Wyoming, USA

Nathan is a funny, smart, happy kid who loves flying, Legos, Star Wars and Minecraft. (who doesn't, right?) We didn't know of his duplication until he was 5. His disabilities came to light rather slowly, beginning with a speech delay, then delayed walking, and other developmental milestones as he approached school. He had feeding difficulties as a newborn (others seemed to, as well), and he is still susceptible to croup.

He does have a significant intellectual disability, and this places him in a fixed-base special education classroom for most of his day. Thankfully, he gets to spend some time with his neurotypical peers, as well. He can read and write, and he is learning more and more in math every day. He is pretty short for his age. People tell me all the time how tall he is, but they forget to compare him to the 5th graders. It's easy to forget how old he is because he is so far behind. He has been in Boy Scouting for 4 1/2 years and manages that pretty well.

He has some behaviors and social difficulties similar to autism, but he cares very much about how people feel. He will hug and kiss anyone whether he knows them or not. He can be VERY willful and contrary, and can be pretty stubborn if he just doesn't want to do what he is asked to do. He panics at loud noises and heights, he hates to do his schoolwork, he will obsess about something for a long time (e.g. buying a certain toy or playing on the iPad, etc.), he gets really grumpy when he is hungry (and his meds take away his appetite, so that is quite the challenge). He is amazingly healthy, and we are thankful for that. He hasn't missed a day of school for illness in at least three years.

If there was one thing I wish people would know or do, it would be to treat Nathan just like any other kid. Some people tend to think he can't do anything, so they don't expect him to do anything. Don't talk down to him or patronize him. Assume he can hear you and knows exactly what you're talking about. He may need further instructions, or simpler words, but don't just brush him off. Push him to be the best he can be. And that should be true of any child. If we have high expectations, they just might surprise us!