The BEAT recently had a chance to talk to Kelly Kooharian about her son Anthony and the EagleEyes system.

What kind of illness / disability does your son have?
Anthony has a genetic disorder called metachromatic leuko dystrophy. He was diagnosed when he was 2½. Anthony progressed relatively normally from birth to one year. At one year, he was doing all the things one year olds do except he wasn't walking independently.

By 18 months, when he still wasn't walking, we had him evaluated. At this time, he was still talking, eating, playing with his toys (he loved Thomas the train, puzzles, coloring, play dough, playing with race cars), and walking with assistance (holding his hand).

By the time he was 2 years old, he was experiencing declines in his overall strength. He was having a harder time walking and was not able to walk as far and was becoming more unstable. At this point, we had moved back to MA so that he could be evaluated at Children's Hospital in Boston.

When he was diagnosed in November of 1994, Anthony could no longer pull himself to standing, and cruise along furniture. He could, however, still talk (and he talked a lot!), color using crayons and markers, play with his toys. To move about, he went back to crawling. When Anthony turned three in May, he entered a period of rapid steady decline. He lost his ability to crawl, eat independently, speak. He became essentially paralyzed. It was also at this time, he began having seizures. By November of 1995, Anthony was a patient of Hospice and it was not expected that he would live to Christmas.

How is Anthony doing now?
Since 2000, Anthony has been relatively stable. He is extremely frail and tires quickly and is very susceptible to respiratory infections. But he has school every day (at home) for four hours. He has two wonderful tutors. He follows a normal grade 7 curriculum. He loves playing and being home-schooled with his 9 year old brother, Sam and 7 year old sister, Madison. He adores is 2 year old sister, Anna.

How did you first hear of EagleEyes?
We first heard about EagleEyes though a previous tutor who had seen a special on TV about the system. We didn't know what to expect because we unfortunately did not see the special and we weren't online at the time so we really had no idea what EagleEyes was all about. I was forever telling people that he spoke with his eyes. Now they can see that he really does!

What has your son been working on with EagleEyes?
Anthony spends approximately three to five hours per week on EE. He uses it along with Clicker Software to share feelings, make choices, and answer questions. When using the Internet EE enables Anthony to explore different interactive websites. For example, when studying Africa, we used a National Geographic website that had an interactive map of one man's expedition through Africa. With EE, Anthony was able to select different checkpoints on the map and read about that area of Africa. With EE and the Internet, Anthony chooses graphics and pictures to insert in documents or projects. For instance, when studying animal classification, we went to the AltaVista website and Anthony chose pictures of animals for a poster he made.

What have you learned about your son that you would not have known without EagleEyes?
Well I've always known Anthony enjoys slapstick humor. He'll smile or even giggle if someone trips over something or stubs a toe and says "ow"! He thinks that that's pretty funny. I can imagine from where he's sitting or lying as the case may be, it must be!

But on EE he can make his own goofs. For instance, when he's done doing something using his Kid's Pix, he loves to blow it up (there's a button that does that) and sometimes I think he does it on purpose even when he's not quite done. His way of saying that's enough.

Do you have any stories about your son using EagleEyes?
I think to most unique story or at least the one that really stands out to us is Anthony's first time using EagleEyes in 2000. It was the first time in 5 years that he was able to do something completely independent. He immediately was able to use the system. He was painting all over the place, blowing up aliens left right and center. I remember thinking as he was doing a shape sorting game and a matching game like concentration "See I told you he was in there." I never needed any proof that Anthony was still here but it does become very tiresome and frustrating to have to explain this to others.

As time has passed I feel less the need for people to "believe" that Anthony is conscious of his environment. In fact, I don't think I really care anymore. I love and look forward to what Anthony will do today with the help from EagleEyes. EagleEyes is another way Anthony can express who he is.