Future Reflections Summer 2011
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by Karen Leinart
From the Editor: Karen Leinart is the adoptive mother of four children from China. As she prepared her youngest, Matthew, to enter school, she realized that she had to become his advocate.
On Christmas Eve, 2004, my husband and I first saw a picture of the little boy in China who would become our fourth child. It's hard to describe the connection we felt to him at first sight, but there it was. Pretty soon we were immersed in preparations for another adoption. Matthew was two years old, and he had been on our agency's list of waiting children for several months. The agency was having a hard time placing him, and soon his file would be returned to China. Perhaps he would be listed with another agency.
Why was it so difficult to place this beautiful child with a family? It's hard to know for sure, but most likely he had not been placed because he has a visual impairment. Matthew has albinism and is legally blind.
We researched albinism extensively before we decided to adopt Matthew. The more we read, the more we concluded that it wouldn't be much of a problem. Our research assured us that all Matthew would need was a lot of sunscreen and some magnification aids at school. Once we brought him home, however, we quickly learned that Matthew needed more than a family to love him. What Matthew needed most was an advocate.
At our first visit to the pediatric ophthalmologist, we had to insist that the doctor provide a prescription for glasses to correct Matthew's astigmatism and myopia. We knew that glasses wouldn't cure his legal blindness, but they would improve the vision he had. The doctor didn't seem to think it was worthwhile to provide Matthew with glasses. He assured us that Matthew would do "just fine" in school with large print books and a seat in the front row.
Though Matthew was almost three, we contacted Early Intervention Services to conduct initial screening so that we would have information ready for his transition to preschool. Early Intervention did a variety of tests and passed the results along to the school district. When we contacted the local school district, we got our next lesson in being Matthew's advocates.
The school district wanted to place Matthew in a preschool that had a program for visually impaired children, but it was ten miles from our home. When we visited the program, we saw a classroom with many children who had multiple needs. Matthew had many post-institutional delays, and we felt he needed exposure to a wider variety of children. We also had concerns about sending a newly adopted child with attachment issues on a long bus ride every day. Once again we had to dig in our heels. At last the district agreed that Matthew could attend a regular class at our local preschool.
Matthew entered our school district's preschool program when he turned three years old. His two older sisters attended the same school, and having them there helped relieve his separation anxiety. Matthew had to do a lot of catching up after his time in the orphanage, and his initial progress was remarkable. At first his vision itinerant mostly observed him, but by the end of the first year he was introduced to a CCTV, a device for magnifying print on the page. We asked about methods for nonvisual learning, and were assured that the classroom was rich in things that provided those opportunities.
As Matthew approached kindergarten, however, we wondered if large print and magnification aids were going to be enough for him. His best vision was about 20/400. He had to hold things very close to see them, and he always had his head bent forward. He seemed to be taking a long time to learn to read and write letters and numbers. The classroom teachers and the vision itinerant assured us that he was doing well, but we felt that perhaps their expectations were too low. It was time for our next lesson in advocacy.
We began to network with several other families that have adopted children with albinism from China. We learned that some of them were having their children learn to use both Braille and large print, becoming dual media readers. Following their lead, we read a study by Dr. Ruby Ryles. Her findings showed that learning Braille as a child had a positive impact on the employment rates of visually impaired adults. We also researched special education law. We found that the IEP team was required to address Matthew's need for Braille.
We started to ask questions about Braille for Matthew. Armed with information from the NFB, I met with Matthew's itinerant teacher of the visually impaired (TVI). She was quick to tell us that Matthew was a visual learner who would not benefit from Braille. We pushed further and set up a meeting with her supervisor. At that meeting, we heard a number of arguments against Braille instruction for Matthew. "No child with albinism has ever needed Braille." "Braille is outdated and is being replaced by technology." "Even if we teach it to him," we were told, "Matthew will never choose to use Braille." Clearly it was going to be a battle to get Braille instruction for Matthew.
At the IEP meeting for Matthew's transition to kindergarten, we came armed with information from the NFB and copies of the study by Ruby Ryles. We finally got some Braille goals added to Matthew's IEP, as well as continued support for large print and magnification. Matthew made some progress during the end of preschool and beginning of kindergarten, but he was being taught Braille visually, and he struggled to see the dots.
Frustrated, we contacted the NFB. The Federation provided us with support, evaluations, and an advocate. Our IEP meeting held during the fall of Matthew's kindergarten year went much better, and daily time for tactile Braille education was added to his IEP. The school district once again wanted to place Matthew in its vision program. We visited the class again. Though we continued to have some concerns, we saw that at the K-1 level it was run more as a resource program, with children spending much of the day in regular ed classrooms. We decided to place Matthew in the vision program for a half day, and in his home school for the other half day.
Matthew's Braille education really took off. He also became much more comfortable and adept at using his visual aids. For first grade, we changed Matthew's placement to the vision program full time.
By the middle of first grade, Matthew started to experience quite a bit of eye fatigue. His reading and classwork slowed down, and frequently he could not finish his homework. His eyes were so tired that he needed over an hour to complete a ten-minute worksheet. Though his Braille instruction was underway, he still used his vision for most of his work in class. His teacher adjusted his schedule and changed the ratio of print and Braille. Matthew started spending half his day doing math, science, and social studies in large print. He spent the other half of his day doing language arts in Braille. He also used Braille for all of his homework assignments. Matthew's Braille skills progressed more rapidly, and his eye fatigue was gone.
Matthew has now finished second grade. At the beginning of the school year, testing showed that he was a year behind grade level with his print reading skills and even further behind in Braille. During the year, he made great progress in both reading media. We have encouraged a lot of Braille reading at home, including participation in the NFB's Braille Readers Are Leaders Contest. Matthew read more than 1,400 pages for the contest this year! His teacher is wonderful at pushing him ahead and having high expectations for him. His end-of-year testing indicates that Matthew is reading at the early third grade level. We are convinced that this improvement occurred because his print and Braille reading have converged. He is now able to read using his full range of capabilities.
Matthew still has to learn some more Braille contractions. Once he learns them he'll be ready to move on to the chapter books he wants to read. He can't read them in print because it's too fatiguing, but soon he'll be ready to take them on in Braille. Over the next year, we expect to see his Braille fluency surpass his fluency with print, and we believe his reading will start to soar.
There is a place for print reading in Matthew's life and a place for Braille. As Matthew continues to learn and mature, he'll find the right place for each.We have a picture of Matthew reading a print book. His head is at almost a 90-degree angle to his body, his eyes squint, and he holds the book a few inches from his face. When Matthew reads Braille, he cuddles up under a blanket, sometimes pulling it up over his head, and enjoys reading. Matthew loves books. With Braille he can read in a comfortable position, without the lights that bother him, and without any eye fatigue. Aside from needing a family, Matthew's biggest need was indeed to have an advocate.
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