Future Reflections         Summer 2010

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MAEGAN'S STORY

by Denise M. Robinson, TVI, PhD

Maegan reads Braille at a desk with a computer behind herFrom the Editor: Denise Robinson is a dedicated educator of blind students in central Washington. She holds a deep conviction that blind students can be as successful as their sighted peers when they are given the skills they need.

Maegan had a tough beginning. Soon after her birth she was diagnosed with retinoblastoma, a malignant tumor on her retinas. One eye had to be removed due to the size of the tumor. A series of treatments eliminated the cancer and left her with a visual acuity of 20/400 in her remaining eye.

Maegan entered school at the age of five with the joy of anticipation. That joy soon turned to heartache. Every day she broke down in tears. She could not see what the teacher was writing on the board or read most of the work that was put in front of her. In the school records her parents did not indicate that she had a visual impairment, so the teachers were confused and perplexed. The kindergarten teacher told the special education director that she thought Maegan had a vision problem. The teacher noted that Maegan brought books and papers up to her nose, and most of the time still could not see what was on the page.

As a teacher of the blind and coordinator of programs for the blind in the area, I was called in to evaluate Maegan. I began by phoning her parents to learn about her circumstances directly from them. Maegan's mom told me that Maegan came home every day with terrible headaches. Wracked with pain and frustration, she usually cried herself to sleep. I knew right away that Maegan's mom was very scared. She had not told the school that her child had a vision problem or explained her history of retinoblastoma because she had huge fears about what would happen if her daughter was seen as different. She was terrified that her daughter would be labeled "blind." I truly felt for her. I could not imagine the turmoil and grief that she and her husband were facing.

The following day I went to the school to meet Maegan. She was a bright, cheerful child with a great interest in learning. After I went through my evaluation I knew I had to help Maegan's parents make a leap of faith. They would have to acknowledge that Maegan was more blind than sighted, and that she needed training in blindness skills. She could learn to read print with letters one to two inches high, but she also needed to learn Braille, assistive technology, and cane travel. These were the skills that would open the way to success for her, while depending on large print would only lead to more heartache.

When a child has a vision problem, I like to start working with the family as soon as possible. Ideally, I would have begun formal Braille and technology training with Maegan at age three to prepare her for school. By now she was three years behind her peers academically, and her parents still were very reluctant for her to receive any special instruction. They did not want her to learn Braille, and they were even more opposed to the long white cane.

We started with small steps. I have visual-acuity lenses that help others see what a low-vision child is seeing. Everyone on the educational team looked through the lenses, but Maegan's mom would not even give it a try. I assured Megan's parents that she had nothing to lose by learning Braille, and that assistive technology would enable her to work as fast as, and eventually faster than, her sighted peers. Finally I convinced them to agree to three hours of Braille instruction a week. I knew this was not enough, and that Maegan's headaches and tears of frustration would continue.

As the months passed, Maegan's mother felt more and more pained by her daughter's unhappiness. The school was not managing to get all of Maegan's materials enlarged for her on time. Even when she had large print, Maegan continued to battle with headaches and slow reading speed. By the end of the year Maegan's mother was out of patience with the school's failure to get Maegan's work enlarged, and dismayed by her lack of educational progress. She went to a lawyer for help.

Her decision proved to be a blessing for Maegan and me. The lawyer she chose had experience fighting for the rights of the blind. She insisted that Maegan receive more training in blindness skills, including intense daily instruction in Braille and technology. The lawyer also said that the school should provide instruction to Maegan's family. I already had in place classes for parents throughout the year, but Maegan's parents had never attended. Once again the lawyer's advice was a huge blessing. Maegan's parents had no idea what they were getting into when they found her!

The following year Maegan received one to two hours of one-on-one instruction in Braille, technology, and cane travel each day. The more instruction she received, the faster she learned. However, when the teacher of the visually impaired (TVI) was not with her, things went less well. Maegan had a paraeducator who was very new and did not want to learn Braille or assistive technology. The para's attitude hindered Maegan's progress, as there was no follow-through on the lessons she learned with the TVI. By now, however, Maegan's parents were fully on board. They worked with her at home and made sure she also received instruction during the summer.

Maegan started the next year with a new paraeducator who was Braille certified and a teacher by nature. He easily incorporated the lessons from the TVI throughout Maegan's school day. This shift was essential, as by the beginning of second grade Maegan had lost all of her remaining sight. She could no longer use her CCTV or her large print books. Because she already had strong blindness skills, she was able to make a smooth transition to purely nonvisual modes of learning.

Maegan's family has come very far indeed. During one of our family nights this winter, when the area's families of blind children gather for learning and fun, Maegan stood up and talked about her life. It just about made me cry. Maegan's parents are seeing what she can do with the right tools, and they are not frightened by the word blind. When you have the tools to get you to where you want to be, blind is not a bad word.

When Maegan's parents tried to conceal her vision loss, they were seeing the image of the blind beggar beside the road. They had no idea about the possibilities that are available today through technology, education, and positive beliefs about blindness. As a society we need to educate people about blindness so that parents will not have so much fear if a child is blind or has low vision. Parents need to learn the tremendous value of blindness skills. Without the options of Braille and assistive technology, enlarged print does not give children the opportunity to compete with their peers. As Maegan gained blindness skills, her learning soared. Instead of a dismal future, her parents began to recognize her potential to live a full and rewarding life.

Anyone with a vision loss will be a second-class citizen if he/she tries to pass as sighted. He or she will not have the skills necessary for success, and will not be able to compete with the rest of the world. However, if a person with a vision loss learns to use Braille, assistive technology, and other nonvisual skills, that person can become a first-class citizen who just happens to be blind.

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