Monday, December 14, 2009

Meet Ben (Part Two)

(If you did not read part one, make sure you go back and read it first)

My family has always been open about the issues Ben faces, so we always welcome questions that people often have.

Arizona Mama asked "does anyone know why/how any of this happened? Like was it a trouble pregnancy or anything?"

The pregnancy was 100% normal/healthy. In fact, it was months before my parents knew something was wrong. Looking back at pictures, it's amazing to see how little muscle tone Ben has when he was little. It was years before he walked, and we used sign language with him until he was 6 or 7.

There maybe a genetic link, but no one in my immediate or extended family has any of the issues or diagnoses Ben has. I guess we have no real answers on this.

Many of you expressed you would never know from the pictures. Amazing, isn't it? It's true. Oftentimes people have no idea until he does something physically that will trigger questioning in their minds. For example, people in church will often offer him a mint because he has a very loud, short coughing tic. It's enough to drive you crazy when really bad. However, he is able to hold them in at places such as church for the most part. A few will inevitably come out, though. Unfortunately, holding them in means they all come out, full-force, once out of the building. They get to the point where he can't talk because he can't stop.

My mom always tells the story of going to a play with Ben. At that time, he had a sniffing tic. He carried around a handkerchief to muffle the sound. I guess this tics were especially bad that night at the play. One of the actors stopped in the middle of his line, turned to the audience, and asked that the person sniffing stop because it was too distracting to him.

Another thing Ben does that will trigger a reaction from people is swinging his arms. When he is upset about something he will swing his arms in your face-no matter where you are. He knows this aggression is wrong, but that knowledge is overridden by a physical need to express himself.

Ben works with a "point system" for his behavior. If he does well getting ready in the morning, he earns a point. He can earn up to three points a day. If his behavior is poor, he will lose a point. Once he has earned 40 points, he can choose something to buy at the store, calling it "his earn".

Because his mind is very much like a child, Ben is interested in all the current children books and movies. For Christmas he wants the book _The Princess and the Frog_. His book shelves are filled with every Disney children's book and novel you can imagine. From Finding Nemo to Beauty and the Beast to Land Before Time, Ben is the Disney master.

Ben will never be able to drive a car. He will never get married. He will never live alone. He will never know what it is like to feel the normal weight adults feel from the world.

Stay tuned once again....there is at least a part three coming up...maybe four.

Again, I always welcome questions!


Arizona Mamma said...

Liz, I find it fascinating. Just how things work out the way they do. I would say your brother is very fortunate to have such a loving family to care for him! I can guess that he has helped to stretch your parents and have them grow in ways they may not have otherwise.

Amanda said...

THank you for sharing this! I am learning so much and appreicate your openness!