April 23rd 2009 - Update by Daddy

Right now I just finished giving Alicia a sandwich. I cut it up in thin rows and she worked on bringing it from her hand to her mouth. You should have seen the smile of self-satisfaction she radiated out when she took a big bite. Earlier in the day I sat Alicia down in her foam chair and let her watch Telatubbies. The entire time she had her new rattle in her hand and she was banging it on the little table in front of her. She really likes to shake the rattle. When she shakes it her eyes get immense with joy as she realizes, "I am doing this," and "I love noise!"

On Monday I brought Alicia into work with me. Linda wanted to try out a night shift that started at 23:00 Sunday night and ended at 7:00 Monday morning. It usually would have been no problem for Linda to work those hours, but everything got changed to occur on Monday. To start with I usually do not work until 12:00 on Monday but on Thursday I was told that I had to come in for the whole day starting at 8:30. Then we received two doctors appointments notices to happen on Monday. The first on was at 7:30 am; it was just to get a blood test done to see what the concentration level was with Alicia's new medicine. The second doctors appointment was at 12:45 for an EEG. The EEG was ordered to see how much epileptic activity was going on. With Linda working all night and getting no sleep, and me starting early, the only option was for me to take Alicia in to school with me and to also take her to all of her appointments.

The reason that I had to go in early is that this week the school is having a musical. While half of the older kids are away we had to watch the other half. There was no set program for the students that were not participating in the musical, so the teachers were able to teach lessons about what ever we wanted. I was in charge of a group of 9 students, ranging in age from 13-16. I thought that this would be a great opportunity to teach the students about empathy.

What is empathy? It is basically respect, understanding and putting yourself in someone else's shoes. I knew I had an opportunity to open the students' eyes to the world of people with disabilities. I started off talking about Alicia's story and some of the difficulties she has had to endure during her first year. I made sure that the students know how much I love her and how she is the most important person in my life. We talked about situations such as what is empathy, what are some things that people make fun of others about, how many people know someone with a disability, what are some of the different types of disabilities, have you ever seen someone make fun of someone with a disability, how did you feel when the did this, why do you think people make fun of people of people with disabilities, how do you think the people with disabilities feel, what can you do when people make fun of people with disabilities, what are some ways that you can help people with disabilities, what are ways to include people with disabilities, and can people with disabilities help you.

The students were really into the discussion and I think that it really opened their eyes seeing someone as beautiful and cute as Alicia and knowing that she has some difficulties. The students also were touched when I showed a youtube clip of Jason McElwain, the basketball player with autism (if you haven't seen this kid's story I suggest you look it up on youtube.com). Through Jason they were able to see what can happen when a school supports someone with a disability. Not only did Jason grow because of the chance that the students gave him, but he helped bring an entire school together. One of the main points that I tried to get across to the students, was that people with disabilities are so much more than just the disability. Alicia is Alicia and one part of her is that she has epilepsy, but epilepsy is not who she is. She is so much more than that. Jason has autism, but he should not be defined by that and when people were able to look past his disability, Jason excelled.

While Alicia was in the class, it was nice to see all the students get a chance to hold her. They had a genuine interest in her and were not afraid to asked questions about her, epilepsy, and Alicia's vision. They really enjoyed seeing her and of course Alicia was making noise as Daddy was talking which everyone found hilarious.