Future Reflections Special Issue: Technology
"Just Do the Best You Can"
by Trudy Pickrel
From the Editor: Obtaining access technology for a blind student is only the first step toward achieving academic equality. Trudy Pickrel's story of frustration and perseverance mirrors that of countless other parents. Trudy is the mother of eight children; five of them are adopted and three are blind. She is president of the Maryland Parents of Blind Children.
My husband and I adopted our son Brandon when he was two and a half years old. As soon as he came home, we contacted our local school district to discuss the services he would need as a blind pupil. We knew it was never too soon to make plans.
We live in a rural corner of western Maryland, and at the time of Brandon's adoption our school district had no program for blind and visually impaired children. In fact, school officials insisted that Brandon was the only blind child in the district. When he was old enough to enter kindergarten, we were advised, he should enroll at the state school for the blind.
My husband and I were aghast. The Maryland School for the Blind is located in Baltimore, a three-hour drive from our home. The idea of sending our little boy to live away from us five days a week was completely unacceptable. We started pushing our district to hire a teacher of the visually impaired (TVI) and to provide orientation and mobility (O&M) services. As time passed, we learned that several other blind and visually impaired children lived in our school district after all. By the time Brandon was ready for kindergarten, the district had hired a TVI, and a program for blind/VI children was in place.
I have known and worked with blind children ever since I was a teenager, when I volunteered with a skiing program for blind youth. I know how much blind people can achieve when given the chance, and from the beginning I wanted Brandon to have all the opportunities he needed. I contacted Barbara Cheadle, who was at that time president of the National Organization of Parents of Blind Children (NOPBC). Barbara gave us a wealth of invaluable resources and advice. One of her best suggestions was that we set up a technology evaluation (commonly known as a tech eval) to determine what technology would best meet Brandon's needs.
We arranged a tech eval for Brandon a year before he started kindergarten, and the timing turned out to be ideal. The evaluation recommended a four-year plan for obtaining technology and introducing it to Brandon. The school was advised to purchase a Braille notetaker and a Braille printer, along with an assortment of low-tech equipment. The school district had a year to put the cost of the equipment into its budget. A BrailleNote and Braille printer were ready and waiting when Brandon began first grade.
We had the equipment that Brandon needed, but to our dismay we discovered that his TVI did not know how to use it. She worked her way through the manual, learning as much as she could so she could teach our son. Like most children, Brandon grasped technology faster than the adults around him. He quickly mastered everything that was taught him on the BrailleNote, and he used it more and more as he progressed through school. However, he was limited to the things his TVI was able to teach him. Furthermore, his TVI never had time to learn to use the Braille printer. The printer sat untouched instead of churning out the Braille materials Brandon desperately needed.
"This is a five-thousand-dollar piece of equipment," the district special education director told me when Brandon's BrailleNote arrived. "Don't even ask me for it to go home!" I was deeply grateful that the district had purchased a BrailleNote for our son, and I didn't want to argue. At least he could use it at school, I told myself. That was far better than nothing!
As time passed, however, I realized that Brandon was at a serious disadvantage because he had to leave his BrailleNote at school. Instead of bringing home his assignments as accessible electronic files, he brought home Braille worksheets. He sat for hours, doing his homework on the Perkins Brailler, trying to correct his mistakes in spelling and grammar. When he got to school the next morning, his teacher's aide transcribed his work from Braille into print for the classroom teacher, trying to make sense of the mess of rubbed-down dots. It was a painstaking process, and I knew it didn't have to be so labor intensive. Like his peers, Brandon should have been doing his homework independently and in an appropriate amount of time. He should have been able to complete assignments at home on his BrailleNote, and, eventually, to print his work for the classroom teacher on a standard printer. In addition, we should have been able to help him edit his work at home by printing it out or by hooking his Braille device to a computer screen.
"For Brandon the BrailleNote is like a pencil and paper," I pointed out to the school again and again. "All of the other kids take their pencils back and forth to school. The BrailleNote should be going back and forth with Brandon!"
The teachers didn't seem to understand. "Just do the best you can," they told me.
I did the best I could. I pressed the school to let Brandon bring his BrailleNote home, and I refused to give up. A year went by, but nothing changed.
Finally the school upgraded Brandon's technology with the purchase of a BrailleNote Apex, the newest notetaker from HumanWare. Now it was the Apex that had to remain at school. At home Brandon had our privately-owned BrailleNote mPower.
At this point, I thought with relief, our troubles were over. Brandon could write his homework on the mPower and carry assignments to school on a thumb drive. No longer would the teacher's aide have to transcribe Brandon's Braille pages; his assignments could be printed out in minutes. The classroom teacher could put new assignments onto the thumb drive for Brandon to bring home.
Alas, this lovely scenario was not to be. For some mysterious reason, the Apex could not read files created on Brandon's BrailleNote mPower, and the mPower could not decipher files created on the Apex. I was convinced that an answer existed somewhere, but getting help was far from simple. Since the Apex had to stay at school, I could not have HumanWare's tech support team walk me through a solution to the problem. Months dragged by. Brandon continued to slog back and forth from worksheet to Perkins to worksheet to Perkins, and the teacher's aide went on transcribing his assignments every morning. Sometimes Brandon had to rewrite a report three or four times from scratch. If he wrote a draft on the mPower at home, he could not access his work during the allotted time at school. He was asked to write the report again during school time, using the Apex, but at home he did not have access to those new edits.
When Brandon started fourth grade, I made up my mind that this year he would bring the Apex home. I sent emails and left phone messages, trying to resolve the issue prior to our IEP meeting. Yet when the day of the IEP arrived, the Apex issue was still unsettled.
At the end of a long IEP meeting I told the school, once again, that it was essential for Brandon to bring the Apex home with him. Without any argument the school said that Brandon could take the Apex back and forth, provided that we sign a waiver and obtain insurance to cover loss or damage. My insurance company agreed to cover the Apex for $40 a year.
Needless to say, I was happy and relieved at the outcome of our long struggle. Nevertheless, questions nagged. Would we have to buy insurance for every new piece of equipment that Brandon needed for his schoolwork? The cost could mount up. What happened to families who couldn't afford the added expense? Didn't the school's requirement that we buy insurance violate the FAPE--the basic principle of "free and appropriate public education" outlined in the Individuals with Disabilities Education Act (IDEA)?
Once Brandon could bring the Apex home, we drove to Baltimore for a visit to the International Braille and Technology Center (IBTC). Housed at the National Center for the Blind, the headquarters of the National Federation of the Blind, the IBTC is a fantastic resource on access technology. Robert Jaquiss gave us hours of his time and finally solved the incompatibility problem between the mPower and the Apex.
At last Brandon is doing more of his assignments at home on the Apex and taking his work to school in electronic files. The grueling ordeal of Brailling and transcription is largely behind us; now homework is just the ordinary nuisance that most fourth graders have to endure. We also experienced another breakthrough this year--the school finally uses the Braille printer to produce worksheets, tests, and other important materials.
Although we have resolved some major problems, I still have a number of concerns. Brandon still does not get electronic books, including textbooks, from Bookshare and other sources. When I watch him walk to the bus each day, staggering under the weight of his backpack with its load of heavy Braille volumes, I know we will find a better way. As Brandon's teacher once advised, I will do the best I can.