When my daughter Leah was two, her ophthalmologist told us that she might not be able to learn to read at a normal age. He explained to us that children with nystagmus take longer to learn to read, if they read at all all, because it is so difficult for them to focus. We hadn’t lost hope that day, but we gradually began to understand that her life was going to be forever affected by her plethora of diagnoses.
Leah’s Vision Story
A 27-week preemie, born February 2004 and weighing 2lbs 8oz, Leah developed post-hemorrhagic hydrocephalus at three weeks old. She was shunted at that time, and during the next several months went from one shunt in the right ventricle to another in the left and ultimately a third shunt in her fourth ventricle.
The operation on her fourth ventricle proved tricky; it’s a small space at the base of the brain just above the brain stem and visual cortex. The neurosurgeon, though fantastic, nicked her optic nerve during the surgery in July 2004. This forced Leah’s eyes to cross.
The pediatric ophthalmologist explained that he could fix her eyes by doing an eye muscle corrective surgery, but would have to wait until she was a year older due to her eye growth and development. In July 2005, Leah had an eye surgery to correct the muscles and force the eyes to straighten. The surgery was said to be a success.
Leah’s eyes immediately looked straighter. However, not even a day later we noticed her eyes shaking. We were scared that this was a symptom of a shunt malfunction or something else wrong with her brain. She had undergone 12 surgeries on her brain at that point and was just over a year old. The doctor told us that she had nystagmus, a condition of involuntary eye movements, acquired in infancy or later in life, which may result in reduced or limited vision. It was an unfortunate risk of the surgery and it would not be going away.
Leah continued to grow and deal with several speed bumps along the way, including Cerebral Palsy and 33 more brain operations. Once she began preschool, she wore glasses, and though developmentally delayed, we didn’t notice major issues with her vision. At the start of Kindergarten we had high hopes for her academically.
We were referred to a low-vision specialist by the school district. He showed us some amazing products on the market for Leah. He talked to us about how magnifying text or pictures she was looking at would assist her in seeing them well. He talked to us about contrasts with light and the importance of her null point (she turns her head to the right, lifts her chin and looks out the left corner of her eyes to see objects better and slow down her nystagmus). We would stare in amazement as she would watch her cartoons, appearing to be looking at the wall, but all the while focusing out of the top left of her eyes. At the conclusion of kindergarten her progress was amazing. She had grasped every concept in her special education class and was referred to first grade in a different class.
In first grade the most amazing thing happened. Leah began to read. She could read short books and read sentences. Leah could read! You read that correctly, Leah could read. The first time she read an entire book to us, albeit seven pages, my husband and I both beamed with such pride it was as if she had become president. She had defied the doctor; she could do what he said she couldn’t do, at the age she was supposed to be doing it. Did this mean someday she could walk? Did this mean someday she could talk as her peers do? The end was limitless. We bought her every book we came across with a larger font, and luckily there were many for her age group.
She did so well in first grade. She didn’t always comprehend what she had read, but that is something most six-year-olds struggle with and later attain. At the end of first grade it was recommended she attend regular education in a second grade class because of how well she had progressed. We were offered to attend the School for the Deaf and Blind, Leah being legally blind by acuity. We declined, wanting to give her the best education possible, in regular surroundings.
Behavioral Problems or Vision Problems?
From the beginning of second grade we noticed that things weren’t going well. Leah would complain that her teacher was yelling at her, telling her to pay attention. She is such a sweet and respectful girl that it broke my heart to hear that her teacher was angry with her. I consulted the teacher who said that Leah would not look at her when she spoke, that Leah would not focus on the board or look at the page they were on in her book.
Leah began to feel different that the other kids because she couldn’t see the calendar when the teacher was pointing to the day of the week. She would try and look but couldn’t see it, so she just listened. The teacher was confusing her vision problems for inattentiveness and therefore treating her poorly.
We had previously given all her ophthalmology reports to the school, outlining where Leah should sit in the class (right hand side in the front) to better see the board and teacher. We got a slant board for her use at home and school so her assignments could be lifted up high. Then she didn’t have to bend over the desk and keep her nose a centimeter from the page.
Cortical Vision Impairment
We had done everything as parents we were told to do, but yet something wasn’t working. She was falling further behind at school and starting to feel that she was different. We consulted the school’s vision specialist and asked for another assessment to be done. After they completed the visual assessment and the orientation and mobility assessment, it was noted that Leah’s vision had declined substantially in the last year. We do take her to her ophthalmologist annually and her prescription is almost always changing each year as she grows, but Leah’s right peripheral vision was completely compromised. She couldn’t see anything that was more than eight feet in front of her and had to use at least 14 pt fonts.
It wasn’t until the assessment we learned that Leah’s vision issues are classified as Cortical Vision Impairment. In normal vision the eyes take a picture of an object. That message is sent to the brain by way of the optic nerves. The brain recognizes the image and integrates it with other sensory messages. The brain then responds to the sensory input by sending a motor response to the appropriate part of the body. When you have CVI (cortical vision impairment) the eye structure in CVI is usually normal. The eye takes a normal picture of the object and sends the message to the brain. The message is not properly processed or integrated because of the abnormal brain function. Many children with CVI have difficulty visually “latching on” to an object and also filtering out peripheral visual stimuli to isolate the object. Any process that damages the brain can cause CVI. Examples include stroke, decreased blood supply, decreased oxygenation, brain malformation or infection, hydrocephalus (increased pressure in the brain), seizure, metabolic disease, head trauma and other neurological disorders.
We have just learned that Leah’s slow cognitive processing speed, which before was attributed mostly to her brain damage suffered from her grade IV intraventricular hemorrhage at birth, is likely from her vision impairment. Her vision makes it so that the things she is focusing on take longer and are harder to do. This is affecting many aspects of her life now that she is eight years old. As parents we can tell when she is tired or sick simply because her nystagmus increases and her eyes shake so fast she can’t focus on anything. She bumps into walls in her walker, and even hits things when crawling around the house. Her exhaustion at the end of the day is based just as much on visual stimuli as it is her physical constraints from cerebral palsy.
Leah is struggling immensely this academic year, and we began to think she had hit an academic plateau. “Is this all her little brain can attain at this point?” we questioned ourselves. “Is school going to become more for social reasons than for academic ones?” we wondered. No, we couldn’t accept that answer, and looked to see if we could adapt things to make them easier for her visually.
Leah’s resource teacher was kind enough to start enlarging her documents at school. All of her math and reading worksheets are now larger. We have noticed a huge difference in Leah being able to see them well. Her math speed has increased and she seems very proud of herself. She reads quicker and comprehends more when she struggles less to see. The slant board has made a huge difference as well. Her handwriting is more legible and her fatigued has decreased when using it.
We refuse to believe that she can’t learn simply because she can’t see well. We’ve come to a speed bump, but we now have to find the tools to put into her toolbox each day she goes to school. Tools like enlarged font worksheets, brighter lights and slant boards. We have recently learned of video feed that can run from the back of the classroom directly to a monitor on her desk with bright light and large font so she can see whatever the teacher is doing, wherever she is doing it in the room.
We haven’t figured out all the answers yet, but we know we will. We will do whatever we can to make sure she has all the adaptations she needs to be able to succeed academically.
All we wanted for her life was a chance. We’ve been fortunate enough at this point. Every afternoon at 3pm I stand next to my van and Leah comes trampling down in her walker saying, “Is my mom there yet?” And even though I’m only 30 feet away, while I know she can’t see me, I know she’ll hear the same answer as she does every day. “Yes, Leah, your mom is there for you!”