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Meet Luke

by Lynn Taylor

 

Reprinted from VISION, the newsletter of the Parent Support Group, Center for Independence, Technology, and Education (CITE), July 1995.

 

Editor's Note: The best introduction to this article is, I think, the same words which Mrs. Taylor used to conclude it: Technology, of course, cannot heal the children, nor solve all the issues of life. It can make life significantly better.

Paul and I had been married for just short of five years when my dream came true. We had a beautiful, perfectly healthy baby boy. It was truly the happiest day of my life. Luke Paul Taylor is now 8 years old. We enjoyed the joys of a first-born son five weeks when the unthinkable happened. Luke suffered a NEAR MISS SIDS (or crib death). He went 5 to 10 minutes without oxygen. This put us on a long course of drastic changes in our life. We are still grateful to our Lord for letting Luke stay with us. Luke is a blessing and has taught us more than we would have ever learned without him.

Luke is multihandicapped, he is legally blind, but he can see. His life is spent either in his wheelchair or in bed. He does not walk and has very little movement. He is nonverbal. Luke is fed with a feeding tube, has a trach, and requires suctioning and several therapies. He also has many medical situations. I know all of this sounds overwhelming to most people but it gives you an idea of his special situation. By ourselves, we could never handle this. We firmly believe God has given us the grace to endure and to see good in our situation from day one.

When Luke was 2 years old, someone told us about CITE. We didn't understand what was done there. We were very hesitant to bring him. I spoke to Mike Quilty, a CITE teacher, over the phone. He told me about switches and computers. He was sure that they could teach Luke how to use both. I kept telling him, you don't understand our situation. Maybe someday Luke could do these things, but right now there is no way he could work a switch and especially not a computer! This was my thinking until Mike convinced me to come down and see for myself what CITE had to offer.

We were impressed from the first day. We discovered that we were in the dark and CITE was there to turn the light on to the possibilities that awaited Luke and us.

CITE has made a major impact in our life over the past six years. Carol Adams was Luke's first CITE teacher. She started working with Luke using fluorescent toys in the black-light box. This got him to stop staring at the ceiling and to track and focus on the toys. Carol noticed Luke was kicking his foot. She asked him to kick for yes and leave it still for no. He did! Carol would ask questions and get an answer! Who would have thought? Carol and the precious people at CITE would have thought!

We then progressed to teaching Luke to apply and release pressure on a big plate switch to control a toy by himself. Wow! Luke could work a switch. It turns out that there are a bunch of switches in the world that I didn't know about. Luke could actually work with one of them to control a toy. Finally, Luke had a way to play.

Next, Carol moved Luke to the computer. It had programs that Luke could activate with his switch. CITE also loaned us switches and special adapted toys so that Luke could play at home. We were on our way on a journey that has let us get to know Luke and give him the tools he needs to access his education and to interact with people.

Luke, now in addition to just moving his hand for yes or no answers, can communicate using a laptop computer with Talking Screen software. There is a sticker on the back of the laptop computer that says 'Can We Talk?' His computer has been programmed with about fifteen pages which includes a needs page, a play page, activities page, places page, and a Bible study page. With the Bible study page, Luke has participated in a regular Sunday School class for children ages 7-12.

The Talking Screen is like working with multiple choices. Luke hits his switch to start a scan of choices. He hears the choices through a pillow speaker that is mounted by his head. When he hears what he wants to say, he hits his switch again to cause his multi-voice speech synthesizer to talk for him in a child's voice. We have all come to recognize this as Luke's voice. We work with Luke to get appropriate choices and things he wants to communicate programmed into the computer for him.

Looking back, we have come a long way. We are grateful that we found out about assisted technology. This allows us to better know Luke and to teach him and find out what he understands. The Talking Screen allows him to tell us at least some of what he has to say! We never knew these possibilities were available until we went to CITE. Technology, of course, cannot heal the children, nor solve all the issues of life. It can make life significantly better.

It opened up a whole world for Luke and I now shudder to think what it would have been like for us without CITE.

Carol and other CITE teachers have a gift for working with children who desperately need special help. They have a special gift for looking past the handicaps and seeing the potential locked inside. They hold some of the keys, and share them freely. I'd like to give a special thank you to all the staff and volunteers who make this program possible. We love and appreciate you all!

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