Ella is a picture of contradiction. She is confusing in inconsistencies. Ella knows the alphabet, she recognizes every letter and will point to it when asked, yet she can pronounce only a few. She has been making a lot of progress in her walking, she can tolerate much more of it yet she cannot handle stopping to walk, or know what to do to get up or sit down. She knows perfectly well what is going on, has very specific preferences about what to do next, what food to eat and what activity she likes, yet her playing is very, very basic, something a 9 month old would do, flipping a toy over and over. She enjoys movies and is very specific about the parts that are funny, amusing or boring yet will not specifically tell you that she needs to go to the bathroom and uses only a few basic words for anything she wants (with a lot of ‘all done’ thrown into the mix). In the right mood she will go on and on as if giving a speech, mimicking the melody of speech, hesitating with ‘ums’ and ‘ahs’ and accentuating the important parts (it is quite amusing actually), with only meaning missing, yet is very basic in her communications with others, often scratching or grabbing. She is aware of her environment and reacts to the presence of people around, yet is at times so painfully helpless and often seems zoned out. One of the most difficult things as a parent is seeing is seeing your handicapped child through the eyes of strangers. We are in tune with Ella’s gestures with her nuanced expressions and articulations (and read a lot into every form of communication) yet when seeing her through someone else’s eyes, it is clear how different she is, how handicapped, how limited. How little she can communicate with the outside world. I often have this nightmare of loosing her and her being found by strangers who would not be able to understand her and not know who she is and how to find us. The other most difficult thing as a parent of a handicapped child (ok there might be other points) is realizing her helplessness. A while ago I was reading Ella and Netta a nighttime story and had to go get something from the other room, when I returned I found Ella had leaned to her left (her weak side) and was unable to right herself, she was just stuck there, her head leaning on a table not able to change her position. A parent’s nightmare. I almost cried. I won’t always be there to protect her. What will happen next time? They always say that kids have strengths, they can handle themselves. This isn’t the case. It is very scary.