Heart of the Matter

Abbie was born the fourth of our five children, at home, surrounded by those who loved her. There were no interventions in her birth, and from start to finish it only lasted six hours. She was a plump, rosy-faced, dark-curly-haired baby. She cried with gusto right away. And didn’t stop for months.

Other than when she was eating or sleeping, she cried literally all the time. I remember one occasion having some people over to watch football and, as I walked around with Abbie in one arm trying to get food put out, she continued her incessant crying. I finally walked over to the couch and dropped her into the arms of a single guy friend of ours and walked out of the house. I wonder if that’s why he didn’t get married for a long time.

There was nothing physically wrong with her that we could figure out, and we chalked it up to colic, whatever that is.

She finally did outgrow the crying and became a happy little girl. She had a vivid imagination and loved to be read to. She would sit for hours and let someone, anyone, read stories to her.

Eventually the time came to begin teaching her some phonics. I used the same books and methods I had used with the other three children, and she seemed to pick it up just fine. I could point to any letter and she could say the sound of it. She had some trouble with the difference between long and short vowels, but that’s not unusual and didn’t really concern me. I figured she would eventually “get” it. She learned to put two sounds together, to recognize digraphs, and in time caught on to the differences in vowel sounds.

By the time she was six, she had a good foundation in phonics and should have been reading primer-level books. She couldn’t. Reading a story was the most painful thing for her—an episode of laboring over the sounding-out process. We figured she just wasn’t “ready.” We continued reading to her and didn’t worry about it.

Then she broke her right arm. Mangled it, really. Skipping across the yard one day, she tripped over a tree root and fell. She splintered one bone and broke the other just below the growth plate at the elbow. Her orthopedic surgeon said that in his 40+ years of practice he had never seen a break like it. She was put back together with a pin from the elbow to the wrist and stayed in a cast for eight weeks. It was months before she regained normal use of that arm and hand, so in the meantime, we made her do things with her left—eat, brush her teeth, get dressed. We wanted her to be independent and learn to care for herself even if it was difficult. We didn’t want her to be helpless.

That would turn out to be a bad idea.

In the meantime, writing activities were put on hold because she is right-handed, and we continued to teach math concepts and phonics skills. We tried different approaches, different curricula, anything to help her get past her sticking point and be able to read. She had no problem with the math concepts, but struggled with the bookwork.

During this time we noticed that she was very artistic. She and her sister Leah would collaborate in story-writing. Leah would write the story and Abbie would draw the illustrations. We put them in a few drawing classes to encourage her obvious gift.

By the time she was eight or nine, we were getting concerned about her lack of ability to read and were searching for answers. The Internet was available at that time, and I spent hours reading, searching, asking other parents for ideas. When Abbie was nine, she asked if she could take piano lessons, and we agreed. She seemed to do well for a few months, but finally one day her teacher took me aside and said, “I don’t think Abbie is reading the notes. I think she is playing by ear.” I thought about it for a while and realized that after every lesson, Abbie would call me over to the piano and say, “Mama, I can’t figure this one out. Will you play it for me so I know how it goes?” And I did. And she learned to play every song by ear.

At this point I was dumbfounded. She couldn’t read words. She couldn’t read music. We had had her eyes checked and were told she had 20/20 vision.

Finally, some kind person on a homeschool website’s discussion board said it sounded like she had a tracking problem. I had never heard of that and went searching. I found Children’s Vision Information Network, which began the uncovering of the depth of Abbie’s difficulties.

We found a developmental optometrist who diagnosed four different areas in which Abbie’s eyes were deficient: tracking, eye teaming/convergence, visual discrimination, and visual memory. We would find out much later that there was more to it than this, but at least we had a starting place.

Abbie went through vision therapy for 18 weeks with Dr. Joel Zaba in Virginia Beach, Virginia. She took a few months off, and then we went back for another six weeks of therapy and some training for me. We worked with her at home for a few more months and by that time, Abbie was reading. She wasn’t reading at grade level, but she could get through a book and was feeling better about herself. Dr. Zaba suggested we let it rest for a while and just let her read as she was willing, so we did. She began to read for pleasure and we thought we were in the clear.

Fast forward eight years. Abbie is now eighteen years old. She has been homeschooled all her life. She remembers very little of what she reads, but remembers most of what she hears. I spend lots of time reading to her in my effort to make sure she actually learns something.

I’ve been doing lots of research myself over the years. Based on her hypersensitivity to sensory input (sounds, lights, tastes, the feel of her clothing) I label her a right-brained child. I decide she is a visual-spatial learner. She is a terrible speller. She learns best by doing and hearing. I try to tailor her education to take advantage of her strengths, but always that lack of comprehension is nagging me in the back of my mind.

We go for testing again with a new developmental optometrist when she turns 18 and is in her senior year of high school. Abbie wants to go to college, but we are not sure if she will be able to handle the reading load, given her slow reading speed and trouble with comprehension and memory. The results show that she is again having trouble with tracking, convergence, visual discrimination, and visual memory. Sometimes this happens, we are told. Some kids need refresher therapy to keep their skills current. She goes through vision therapy again, this time using a computer-based program we can do at home. She graduates from high school and registers for her first semester at the community college.

She excels in her drawing class and makes it through developmental math with a little effort. But she dreads psychology, which requires the reading of a 500-page, very technical, very dry textbook. Abbie is in tears after the first week. She assures us she is going to fail this class, can’t remember anything she has read, can’t even read more than 15 minutes without feeling exhausted.

I begin to read the book to her, discussing each section as we go through it, and it helps. But I know I can’t do this forever. At some point she will go away to college, and I won’t be there to pick up the slack.

We make another appointment with the vision therapist for a third round of testing. The testing is different this time—more in-depth. They make some fascinating discoveries.

Her eyes are still not doing the things they are supposed to do, but more than that, she is not processing the information that’s coming in through her eyes. It’s not just an eye problem, but a neural, or brain, problem. Connections have not been made that are supposed to be there. Remember the broken arm? Remember us making her use her left hand to do things she would normally do with her right? In doing so, there is a chance we contributed to her brain’s inability to form pathways between the two hemispheres, resulting in the two halves’ inability to “speak” to each other. While some of her difficulties are no doubt genetic, we may have made the problem worse in our effort to help her be independent. The official name is Visual Processing Disorder, one of the many sensory integration dysfunctions. The neural pathways that are supposed to exist between the two halves of the brain are disrupted; therefore the two halves of the brain perceive different things. And that’s what this is all about—the perception of what she reads. Try to imagine taking in some information, and one side of the brain perceives one thing while the other side perceives something different and the two sides are trying to justify them into one concept. Imagine how frustrating that would be! The doctor asked me at one point if Abbie was athletic. I laughed and said no. She has always joked about being uncoordinated. Turns out there’s a good explanation for that.

Abbie can pick up a ball and throw it easily. But if you throw a ball to her, the two sides of her brain perceive different images of the ball, they can’t justify where it is, and she misses it. When Abbie heard this, she was excited and said, “That means it’s not my fault!”

They want her to do “in-office” therapy again. The doctor has said this proposed therapy is much more intensive than anything Abbie has had before and that’s why it will work better. I thanked her and left.

Ben and I are willing to spend any amount of money to get Abbie the help she needs, but there’s been this little bit of hesitation. I just felt like we only had one person’s—one specialist’s—opinion, and what if that one person were wrong? But I didn’t know where else to turn.

I had made a visit to her psychology professor to explain the difficulties Abbie was having and to find out what else we could do to help her. After hearing her story, he asked if we had ever had psycho-educational testing done. I scoffed, thinking, “She’s not crazy; she just has poor comprehension.”

Then I had a conversation with the vision therapist, whom I really like, and asked her, if this were her daughter, would she take her for more testing, just to be very sure of what the problem was before she started dumping thousands of dollars into therapy, and she said, “Absolutely.” I was so glad to hear that. So I spoke to my sister-in-law, a Montessori teacher with her master’s degree in special education, and she recommended a group of educational psychologists she has worked with in Northern Virginia where we could have Abbie tested, and where they offer many types of therapies if it turns out the vision therapy is not what she really needs.

Abbie had her psycho-educational testing in late December and early January, and we were finally able to meet with the psychologist to get the results.

What an eye-opener.

Some things were no surprise, like the fact that she has plenty of intelligence. No lack in that area. But for her to hear it from a professional did Abbie a world of good. In most tasks, she scored from average to sky-high above average, especially when it involved pictures. In one test, the doctor showed her a complicated, geometrical drawing involving all sorts of random shapes, lines, crisscrosses, squiggles, and dots and had her draw it. Ok, fine. Then 30 minutes later she said, “Remember that picture you drew a while ago? Draw it again. From memory.” And Abbie was able to almost perfectly (and to scale) reproduce it. Amazing. Show her a picture of a bunch of things and she can remember all of them, where they were in the picture, what expressions people had on their faces, and can tell you what’s missing from a replication of the picture.

Tasks that used her auditory system were a breeze for her. She remembers everything she hears, even long-term. We used to help her memorize Bible verses for AWANA by singing them to familiar tunes.

But anything that involves the reading of small symbols, letters, or numbers is a huge struggle for her. Her processing speed in that area drops to the fourth percentile, and was even below the first percentile on one test. It blew my mind. It’s not an inability to see—she sees fine. It’s not an inability to read—she reads fine. She does math fine. It’s the processing of the information that slows her down. Her brain’s perception of those small symbols somehow doesn’t work right. She can do anything anyone else can do; it just takes her much, much longer. This is not something that can be “fixed.” We may be able to improve her processing speed slightly with various therapies, but basically it’s just part of who she is.

So where do we go from here?

We look at compensatory strategies—what we can do to help her in her weak areas and take advantage of her strengths. We can get her textbooks on CD so she can listen to them. Many colleges have text readers in their computer labs. She can record lectures and listen to them again at home. She can use note cards that have very short “blips” of information on them, rather than long, detailed paragraphs. I can study aloud with her. She qualifies for longer test times and can take tests in the learning center. She can have someone read tests to her and can take some tests orally. She can use spell-check and qualifies for help writing papers.

On the bright side, she has plenty of strengths. She is a wonderful musician and a gifted artist. Her people skills are outstanding—everyone loves her. Her character will take her a long way.

There is no doubt in my mind that Abbie can succeed at whatever she wants to do. And now that she knows she is just as smart as the next person, she has great hope.

So do we.

Karen has been happily married to Ben for 25 years, is Mom to five children ages 16 to 24, and is Grammy to Jonathan David. She has homeschooled all five children from birth. One is married, two have graduated from college, and the last child is in eleventh grade. Abbie is currently a freshman at Liberty University, where she is studying studio art. Karen enjoys reading and is a self-professed grammar freak. She works as an editor for The Old Schoolhouse® Magazine. Visit her blog at Bensrib.blogspot.com.