Using technology to achieve her dreams

Melissa Hamelin, Editor
Monday April 14, 2008

Kaitlyn Pas has certainly faced some challenges in her life. This beautiful girl's spirit has been tested, but has never diminished despite the fact that she is confined to a small bed, and rarely leaves her house because something as common as a flu bug poses a serious threat to her already fragile health.
Born with SMA, (Spinal Muscular Atrophy) Kaitlyn has had to face many challenges in her young life, but she is finally able to do something her doctors told her parents that she would never be able to accomplish. Kaitlyn will be attending kindergarten.
Kaitlyn was born April 24th, 2002 and was diagnosed as the only person in Alberta with SMA three months later. Doctors told her parents that she would not survive past her second birthday and advised to love her and keep her comfortable. Luckily, Ms. Pas decided to take Kaitlyn's future into her own hands and research her condition. It is because of that decision that Kaitlyn is about to celebrate her sixth birthday.
"I was able to go outside of my home and find information, mostly from the States, on how to treat this disorder," Ms. Pas explained. "There is still no cure, but at least there is treatment and I wouldn't have had that information without the Internet."
According to Families of Spinal Muscular Atrophy, an international non-profit association dedication to research and awareness of this disorder, SMA is a motor neuron disease where motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. SMA affects muscles throughout the body, although the proximal muscles (those closest to the trunk of one’s body - i.e. shoulders, hips, and back) are often most severely affected. Despite these physical limitations, the mind is not affected and generally people with SMA are actually quite bright and tend to be very social.
Naturally when it came time to enroll her daughter in Kindergarten, Ms. Pas chose once again to look to technology for the answer.
"I said, 'now is the time to do something to get her out of these four walls.' She has the right to go to school just like everybody else," she recalled. "She does have a teacher come out, but she needs to be able to interact with the kids, especially in the winter months."

Although Kaitlyn will not be able to physically attend school on a regular basis, her mother was able to come up with a way to allow her to still experience the classroom through video conferencing, an exciting first for Northern Gateway.
Shelly Wyman, Principal of David Ovans School where Kaitlyn attends, said that the Ms. Pas phoned the school and suggested that they set up a web cam in the classroom so that Kaitlyn could see all of her friends. After some discussion with Northern Gateway's resident "Tech Wiz" John Lobo, it was decided that video conferencing would be the best route to go.
"Right now, from the test we did, she can see the classroom very well," reported Wyman. "The kids can see her; because she is in the bed and she doesn't move that works out well for videoconferencing. They can interact. The kids talked to her and sang a song and she responded back. For the first test, it was great."
Wyman reported that the conferencing was extra special for Kaitlyn because she has two cousins that are also in the kindergarten class who were able to say hi to her on the screen.
Ms. Pas reported that Kaitlyn was so excited when she saw the inside of the classroom that she abandoned her usual shyness.
"Kaitlyn doesn't talk, but she is vocal and will make sounds," she explained. “She certainly doesn’t say anything when she doesn't know somebody because she is shy. John Lobo she has never met before and I would have thought that she would have said nothing, but she was using her voice and her eyes were really big."
Ms. Pas said that she feels that this experience will also benefit the kindergarten class when Kaitlyn is able to visit.
"It is also good for them to see her, especially when she is getting a therapy done, so when we do bring her into the school, they are not so scared or curious when I start suctioning Kaitlyn or having to cough her, or if she has to go back on her by-pass," she said. "It takes away from the whole reason we took her to school. We took her to school to see her peers, learn something from her teacher and have fun. It takes away from that when you have kids saying, ‘what are you doing?’ ‘What's she doing?’ Staring at her and not listening to the teacher because it is all too scary and brand new."
Wyman said that they are now in the planning stages for next year and hopes to have Kaitlyn able to hear the morning announcements and sing O'Canada with her classmates.
"She will stay with the classroom for a little bit and then she will resume her programming with her teaching assistant," she explained. "Ideally we would like video conferencing cameras that you can zoom in and out. On her end, her teacher could zoom into the white board in the classroom, or zoom in to the teacher in the room so she can see what is happening. Right now she can get a big picture view. It is not great for programming, but at least she can be part of the classroom experience."
Ms. Pas commented that she didn't mind that Kaitlyn is pioneering a new way of learning for children.
"I don't think that Sangudo has had a severely disabled child in their school," she said. "I am hoping if they do ever have another severely disabled child they know that there are things that can be done to allow them to be as normal as possible and have a close to a normal school day. I hope this will open doors not only for David Ovans, but for all of Northern Gateway."
"I think this is a great thing for our school as well and it is enjoyable to be on the cutting edge of technology. I think it speaks well to John Lobo, who helped us set it up, to Deirdre Bray, who is our Special Education Teacher," said Wyman. "There is so many opportunities here that we are just starting to explore with this."