Meet Luke

Meet Luke

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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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