Print, Braille, or Both: Exploring the Many Options for Literacy in Children with Albinism Article
by Marla Palmer
Originally published in the the Spring 2007, issue of Albinism InSight. Reprinted in the special Future Reflections issue “A Celebration of Braille”. Reprinted with permission of publisher and author.
Editor’s Note: Marla Palmer is the president of the NFB’s parents’ division in Utah. She helped organize and get the division off the ground about a decade ago when her daughter was just a baby. The division is now one of the most active in the country, and is known and respected throughout the state as the premier authority and voice of parents of blind children. Readers may recognize Marla’s name from past articles she’s contributed to Future Reflections. Two years ago Marla sent a letter to the national office of NOAH, the National Organization for Albinism and Hypopigmentation. To her surprise and delight, she was told that she could submit the letter as an opinion piece for publication in Albinism InSight. She did, and it was published in the Spring 2007 issue. When considering the article for this special issue, I asked Marla if she could give me an update to publish with her original letter. Specifically, how was her daughter doing with her Braille? Did NOAH make any changes in response to her letter? Here’s what Marla says about print or Braille for her daughter:
It has been ten years since I learned that our oldest daughter, Megan, was diagnosed with ocular albinism. Our second child, Adam, followed several years later and he too was born with albinism. NOAH has been a great resource, especially in their early years, and I make it a routine to visit
Both children are mainstreamed into a public charter school so I was recently reviewing the “Students with Albinism” section of the Web site. I came upon the question that perked my interest: Does My Student Need Braille? The response on the Web site reads, “Probably not. Most students with albinism have sufficient vision to use standard text, even if they need to use large print text or low vision aides. If your student with albinism is having difficulty reading print or tires of it easily, look into books on tape as an alternative.”
I have to admit I was surprised at the belief and attitude NOAH’s leadership has taken toward Braille. I feel that it’s one thing to take a position or give an opinion that most children with albinism will not need Braille (which I don’t agree with), but the statement on your Web site could easily mislead parents about educational requirements.
The law clearly states that any visually impaired children not receiving Braille legally need to have an evaluation on file demonstrating why it is not needed now or in the future. This was addressed in the IDEA reauthorization of 2004: Section 614 (d)(3)(B)(iii) (B) Consideration of Special Factors.
These educational laws were not created based on the myths that Braille is “on its way out,” bulky, too hard to learn, outdated, or not readily available. These bills have been mandated because Braille has proved to be a valuable alternative and appropriate reading medium for many individuals with low vision.
It is common knowledge that large print and assistive devices can help a child with low vision read with more ease. Unfortunately, when enlarged print becomes more of a hindrance than help, it is often brushed aside with excuses or justification due to misconceptions, stigmas, or negative attitudes toward Braille and/or blindness.
If large or magnified print is too slow and laborious to read, look at an alternative. If it takes your child two or three times longer to complete an assignment compared to their sighted peers, look at an alternative. If reading print becomes more of a chore and is not enjoyable, look at an alternative. If your child goes to the public library to find a book he wants to read and ends up empty-handed, look at an alternative. If eyestrain, headaches, neck pain, and poor posture become an issue, look at an alternative. If your child has to stay up late to memorize a speech that was intended to be read or comes home with an ink stained nose from his paper, look at an alternative.
Audio resources, as suggested on the Web site, are an alternative, but plain and simple, it is not literacy. Listening to a book on tape is enjoyable for some no doubt, but there is nothing like the freedom and ability to read. Braille is a viable, available, and alternative choice.
Both of my children have sufficient vision to read standard print, use large print text in class, are trained in using assistive devices, listen to books on tape, and read Braille. We have never felt that because they do one, they shouldn’t have the opportunity to do the other. Print has been easier for my children to read from preschool through second grade because the print has typically been larger in these grades.
We have already seen the positive affect Braille has had on our oldest child who is now in fourth grade. When it was communicated that her history book was backordered in large print and would not be available until two months into the school year, Megan opted to receive a Braille copy that was readily available.
Megan has given presentations where she has been able to sit upright and give eye contact because she was reading Braille. There have been many times that Megan has gone to the library to locate a specific book she was interested in, only to go away frustrated that the print was too small. Her reading material was being limited to what was available in large print. Her choices have increased significantly because she now has the ability to download books into her electronic Braille notetaker and read at her leisure.
I admit having my children learn Braille as an alternative means to reading print has not been smooth sailing. It’s taken extra time and effort, communication and collaboration with our IEP teams, and a lot of patience and creativity. With that said, I don’t regret our decision. Don’t be afraid to step out of your comfort zone, “look outside of the box,” and provide opportunities and skills that can ultimately have a positive impact on your child’s education, confidence, and independence.
UPDATE—Marla Palmer, March 16, 2009
It’s been almost two years since the article was published in the Spring 2007 Edition of Albinism Insight. Although NOAH continues to be a great resource and support for parents with children with albinism, after recently searching their Web site, I was surprised to see that their site continues to publicize insufficient information. Under the Teachers of Students with Albinism section is still a link to the question: Does my student need Braille? The answer on the Web site continues to read, “Probably Not. Most students with albinism have sufficient vision to use standard text, even if they need to use large print text or low vision aides. If your student with albinism is having difficulty reading print or tires of it easily, look into books on tape as an alternative.” (See <www.albinism.org/faq/students.html#Anchor-Does-37516>.)
The position NOAH takes toward Braille is beyond disappointing. I am aware of many families who have children with albinism who are battling to have Braille written into their child’s IEP. Having a national organization support the opinion that students only need large print, low vision aides, and audio, does not help their case. I would urge the adults, parents, and doctors on NOAH’s board to take a closer look at the underlying negative attitudes towards Braille and be a support rather than a hindrance on this important literacy option.
Megan is now a sixth grader and continues to be a dual reader. She uses print regularly and receives Braille instruction. Megan hit a plateau during fourth and fifth grade, consistently reading Braille between 40 and 45 words per minute on a cold read. After some encouragement (and parent bribery), Megan set a personal goal this year to read a minimum of thirty minutes of Braille every day. During the months of September to December Megan missed a total of three days and her fluency and speed jumped to 70 words per minute. From December to February, she jumped to 90 words per minute. Megan recently participated in Utah’s Braille Challenge and took first place overall in her division. She is bound and determined to reach her personal goal of 125 words per minute.
Future Reflections article found here