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How technology assists my daughter to compete in the mainstream of life.

Technology can assist children with disabilities in remarkable ways. Each year we share with our readers outstanding examples of how the use of technology has made a dramatic impact on the life of a child with a disability. We are proud to share with you the winner of the 1992 Best Technology & Everyday Life Award.

How Technology Assists My Daughter To Compete in the Mainstream of Life by Carol Lode

My daughter Sierra, who has just turned nine, has severe cerebral palsy. She is quadriplegic and nonverbal. Although all of her early indicators -- appropriate social smile, alertness, inquisitive and understanding facial expressions -- led my husband and me to believe that Sierra's cognitive abilities were intact, we still had nagging doubts. How could we know for sure that her mind was eager to challenge the physical limitations Fate had dealt her?

At the age of 10 months, Sierra was evaluated by a pediatric neurologist. This doctor very negatively suggested that she would not benefit from any therapy. We both left her office seething, and despite the expert opinion we had just received, we were determined to take a different approach. We were soon kneedeep in "early intervention," only at the time we didn't know that's what it was called.

When Sierra was three, and in her first year of preschool, she was introduced to a cheek switch and battery-operated toys. She demonstrated she had the concept of "cause and effect" down pat, but she didn't seem overly motivated. A therapist suggested we try a lighted scanning board with Sierra's switch.

Sierra loved dolls, although her ability to play with them was limited to just looking at them. We could tell she longed to hold them, change their clothes and care for them. We cut out pictures of various doll clothing and doll activities and positioned them in the squares of the scanning board. Talk about motivation! Sierra was zapping her cheek switch lickety-split, choosing what outfit the doll should wear. We were all ecstatic, and the feedback from her play partners was great.

I had a new purpose -- to advocate the use of technology in my daughter's life in every way imaginable. Sierra also had a new purpose -- to play and learn like any other kid.

Our next goal was electronic augmentative communication. Sierra's preschool staff did a wonderful job of getting her ready for a clinical speech/language evaluation. At this session Sierra demonstrated she had all of the prerequisite skills necessary to operate a portable, battery-operated electronic computer device that has speech output in an optional child's voice. Activation of a single switch selects the icon location desired and results in high-quality speech output. Within a month, Sierra was having great success with it. It was unbelievable; if I had even a tad of lingering doubts about Sierra's cognitive abilities, they were now completely gone. After one month, around her fourth birthday, Sierra had memorized the locations of all the icon areas and could recall all of the sights without even having an overlay on the front of the device. I was amazed, and now wondered if we might have a genius in the family!

In the Hawthorne Preschool for Children with Disabilities, Sierra was now a verbal participant of "circle time." Only another parent who has experienced this wonderful phenomenon could fully appreciate the emotional enormity of this evolution. To me, hearing her contribute the calendar date or telling about the weather using the electronic speech output device was similar to the emotions I would feel if she were the valedictorian at her college commencement exercises.

We were told by a valued speech therapist that using an electrically-powered wheelchair could be even more motivating for some children than communication. We were eager to try this scary but exciting piece of technology. This system served her well for two years and by the end of the first grade Sierra was motoring independently within her school building and "running" around outside at recess.

We next got an Apple 11GS with a peripheral device that offered Sierra access to the keyboard by other means. She was able to use her electronic speech output device which interfaced with the computer, and a beginning word processing program to help arrange her pre-programmed vocabulary into stories and letters complete with colored graphics. The adaptive input device allowed her to use commercial software by means of a single switch. Those days of exploring new software games and colorful programs were really exciting, but the aplication of the computer in the classroom was the greatest thrill of all.

After three years of preschool Sierra was placed in a regular kindergarten class because she was deemed academically and socially competitive with her peers. Kindergarten was a huge success with many school staff scratching their heads over such an accomplishment. First grade was also successful, but the most rewarding school experience so far has been second grade. Sierra did all of her spelling tests on the computer using her electronic speech output device as her keyboard. She had to study hard, but she did well and her papers looked so professional. Reading comprehension tests and math papers were also done on the computer.

Equally rewarding were the friendships that evolved during that year. Sierra's relationship with seven wonderful little girls formed a tight bond of "kindred spirits." Within this circle of friends, Sierra's disabilities disappear and she is just "Sierra." She has all their names on her keyboard and they have elected her president of their "Girl's Club."

It was also in the second grade that Sierra had her first "speaking" part in the class play which was about friends -- and how appropriate! She said her line right on cue, and I got a huge lump in my throat.

Sierra is now proudly driving a computer-controlled, power-base wheelchair. Her mobility independence has grown tremendously with the options available with this base. Equipped strictly with head switches, she has access to two driving modes with two speeds in each mode. The options for customization are numerous and she now has the power to go places where she had gotten stuck before! New software is broadening Sierra's educational horizons. We recently purchased a visual tracking system. With this program the Apple computer turns into a reading machine displaying the text in a choice of formats that accommodates the speed and modality of the reader. We are just getting into two of Don Johnston's software programs. Access to Math allows Sierra to do the same math work with her computer that her third grade classmates do on worksheets. It has visual manipulators to aid in counting and a cursor that always shows you where your answer should appear. Predict It is a word processing program that predicts the word you want by entering the first letter of the word. It considerably reduces the number of keystrokes required to word process. Now Sierra will have the opportunity and the power to get what's on her mind down on paper. We've been waiting a long time for this independent expression.

It may sound as though the road to acquire technology was paved smoothly for us -- not so! There were many pot holes along the way, the biggest of which was funding. Other problems were time, energy, frustration, impatience, lack of technical support, lack of moral support, glitches, crashes, maintenance and repair to name a few. It took endless time and patience, not only for Sierra, but for all who worked with her, in order for her to attain skills to use complicated technical equipment. I can say unequivocally that it was all worth it.

Carol Lode lives in Helena, Mont., with her husband, Fred, and daughter, Sierra, 9. She works for the Helena School District #1.
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Title Annotation:Best Technology & Everyday Life Award; Technology Section
Author:Lode, Carol
Publication:The Exceptional Parent
Date:Nov 1, 1992
Previous Article:Assistive technology: a student's right.
Next Article:Visions of the future.

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