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July 21, 2009
Dear President Obama:
Maegan and her parents had a tough beginning. She is a twin, and soon after her birth doctors discovered that she had retinal blastoma (a tumor on her retina). She entered school at five in the joy of anticipating that she would be able to learn. That joy soon turned to heartache as she broke down in tears daily, saying she could not see what the teacher was writing on the board nor could she read the majority of what was put in front of her. The kindergarten teacher told the special education director that she thought this child had a vision problem because she brought everything up to her nose and still could not see what was on the page most of the time. The school records from the parents did not indicate that she had a vision problem, but the school wanted to address what seemed a hindrance in her learning.
I, as a teacher of the blind and coordinator for blind programming in the area, was called in to evaluate her. I generally begin my evaluation by calling the parents and learning directly from them what the circumstances are, and I gather any potential information about the vision problem. I could tell this was a scared mom. She did not put down on her school paperwork that her child had a vision problem or retinal blastoma because of her huge fear of her daughter being different--of her daughter having this condition--of her daughter being labeled blind. I felt for the mom. I could not imagine the turmoil and grief of this mom and her husband. This was their first daughter.
The following day I went to the school to see Maegan. She was a bright and cheerful child, full of excitement, but more than anything she had a great interest in learning. I went through my evaluation, and, based on what I discovered, I knew that I needed to help the parents accept that their daughter was a blind child. I needed to persuade the parents that she needed instruction in Braille and other blindness skills. These were the skills that were going to give her success, and large print would lead only to more heartache. Mom had already told me that Maegan came home every day with such acute headaches that she usually cried herself to sleep between the frustration of not being able to see anything one inch past her nose and the pain in her head.
Maegan was already behind in her learning. I want to start working with families and children as soon as they are born, as soon as a vision problem is identified. I would have begun Meagan’s formal Braille and technology training at three so that she would be ready for school. But now she was already three years behind her peers, and I was dealing with reluctant parents who did not want her to have special instruction--especially in Braille. They were even more opposed to the cane. So we started small. I have glass lenses that actually show what a child is seeing, so the educational team took a look, but Mom would not. I told them that she had nothing to lose if she learned Braille and that the technology would enable her to produce work as fast as her peers. I got them to agree to a total of three hours on three days a week. I knew this was not enough and that her headaches and tears of frustration would continue. After several months Mom was seeing and feeling Maegan’s unhappiness, especially because the school was not getting everything enlarged on time for her. More than anything, even with the large print, the headaches and slow speed continued. Fortunately by the end of the year Mom had had it with the school's lack of ability to get Maegan’s work enlarged and to her on time. Mom went to a lawyer for advocacy support.
This turned out to be a blessing for Maegan. The lawyer fought for the rights of the blind, so she insisted that Maegan have more instructional time, which would include intensive Braille and technology instruction every day of the week. The lawyer also said that the school should provide instruction to the family. I already had in place classes for parents to learn more skills throughout the year, but they had never attended, so once again this was a huge blessing. I know the parents did not realize what they were getting into, but it turned out for the best for Maegan.
The following year we were able to see Maegan every day for a minimum of one to two hours of intense instruction. The more Braille, technology, and cane instruction Maegan got, the faster she learned. Mom and Dad could see the results and really got on board. Maegan also gets intense instruction in the summer, and by next year she will be on grade level.
I am telling you the highlights. However, there were a lot of bumps in the road along the way. As a society we need to educate people better so there is not so much fear if a child is blind or has any type of vision loss. Any child with vision loss needs to be learning these blindness skills. Enlarged print and no technology do not give children the opportunity to compete with their peers. These parents had no idea what type of services were out there. All they envisioned was the poor blind beggar along the road with no ability or opportunity. As Maegan learned blindness skills, she took off in her learning and the parents could start dreaming about her potential in life--not a dismal future. I could start dreaming about what she could become because I knew that without these blindness skills she had a higher chance of joining that 70-80 percent unemployment statistic than she did of reaching her goals.
Those with significant vision loss will always be second-class citizens if they try to pass as sighted. They will not have the necessary skills to succeed and compete with the rest of the world. However, if people with vision loss learn Braille, technology, and other blindness skills, they can become first-class citizens.
Denise M. Robinson