My son read The Lord of the Rings when he was nine years old. Henry said he didn’t understand all the words but he could recall the storyline in detail. His twin sister Maggie read the first two Harry Potter books but when asked simple questions about plot and character, confessed she had simply turned the pages.
I fought against the inevitable comparing that comes with parenting twins but we live in Djibouti in the Horn of Africa and at the time there was not one single other American, native-English speaking 9-year old in the country. I was forced to compare my two. Forced to acknowledge a gaping difference in their reading abilities.
My myopic vision of what a child should be capable of blinded me to Maggie’s unique challenges.
Maggie said: My eyes get tired when I read.
I thought: Don’t be lazy.
Maggie said: I get headaches when I read.
I thought: Excuses, excuses. Don’t be stubborn.
Maggie brought back homework with letters missing from words, math problems with numbers in switched positions, failed spelling tests.
I thought: She lacks motivation and concentration.
Maggie played soccer and the ball would sit at her feet. She would swing her leg, way back and then way forward, and…swing and a miss.
I thought: She’s more of an artist than an athlete.
As she fell further behind in school I blamed it on the foreign language (French), willfully oblivious to the truth that Henry was in the same foreign language and not falling behind.
Vision therapists point out that the need for therapy is not easy to identify, it isn’t as simple as noticing a lazy eye or hearing a kid complain that words swim around the page. Vision therapists also point out that any number of complicating factors play into a child’s success in school and their ability to read and write.
The summer before the twins entered fourth grade we returned to the United Sates for a few months. I signed them up to take an Iowa Basic Skills test, we needed to see where they stood against American kids their age.
Maggie did not stand up. She fell flat.
There were cultural issues on the test that I hadn’t thought to prepare them for. They knew the value of francs and Euros but didn’t know what a quarter or a nickel were worth and so failed the math and money portion. Synonyms and antonyms often tested culture knowledge as much as definitions. Henry achieved decent scores. Maggie didn’t even finish.
The test administrator watched Maggie tilt the paper, tilt her head, squint, move the paper closer to her face and push it further away. Maggie rubbed her eyes and grew more and more fatigued as the test went on.
Maggie’s eyesight had recently been tested and was 20/20. But something was clearly wrong.
“I don’t know much about it,” the administrator said, “but have you heard of Vision Therapy? I recommend you look into it.”
I googled ‘vision therapy’ and found this definition: a type of physical therapy for the eyes and brain.
I found a clinic and after hours of tests, Dr. Les Alsterlund confirmed that Maggie had significant vision difficulties. I said her vision was perfect but he corrected me and explained the difference between eyesight and vision. Eyesight is what most kids are tested for on a routine basis, acuity, the ability to see clearly or not.
Dr. Stanley A. Applebaum, quoted in a New York Times Magazine article, described vision as, “how eyes work together and move together and process information and store information and do something with the information.”
Clinically, vision therapists highlight issues including visual acuity, binocular coordination, convergence insufficiency, visual-motor problems, and more. Maggie tested weak in the skills required for reading, writing, depth-perception, peripheral vision, and hand-eye coordination.
She could see the soccer ball clearly but couldn’t judge depth perception to know how close to her foot it was. She saw numbers clearly but copied them onto her homework out of order. She saw words clearly but would skipped letters, words, or entire lines. Comprehension was nearly impossible but she thought this was how words and numbers looked, she thought she was the only one struggling and simply felt frustrated. And stupid. And exhausted – her eyes weren’t tracking together, one constantly lagged. Pulling them together made her eyes tired, gave her headache, made her dizzy.
She wasn’t lazy after all, or stubborn, or offering lame excuses. She was working hard. Harder than most of the other students in her class but she made little progress because she couldn’t make letters stop floating, she didn’t know she was reading right to left sometimes and left to right other times. Maggie, a calm and respectful kid, endured her headaches and struggles mostly in silence.
Dr. Les showed me how her eyes struggled to work together. One simple test was the cross-eyed test of bringing a finger close to her nose and watching the eyes. Her right eye narrowed in on the finger and her left eye wobbled a bit, then shot out to the side.
“Are you looking at my finger with both eyes?” Dr. Les asked.
“Yes,” Maggie said.
She wasn’t. Dr. Les said she was going to learn to be aware of where her eye was looking and how to control it. She needed to coordinate her eyes so they could track together effortlessly.
He showed me pages on which she was supposed to copy either shapes or sentences. Her shapes were wonky and imbalanced, her sentences missed words. When she read them back, out loud, she didn’t notice the missing words because her reading comprehension was so low.
I was surprised by the comprehension difficulty, surprised she had never mentioned that words swam around on the page. But if a kid has only ever experienced the world in a jumble of confusing sounds, only ever seen letters that disappear, change places, or turn backwards, that is all she knows.
At the end of our time in the US, Maggie had made significant improvement and Dr. Les sent dozens of assignments and home therapies and pieces of equipment with us.
The exercises included things like continuing the cross-eyed test and encouraging Maggie to be aware of her left eye, to pull it in. We hung a ball labeled with letters and numbers from the ceiling and passed it back and forth while calling out the letters. She traced circles on a white board. She walked across the room with her hands and feet pointing in opposite directions. She followed different colored beads as I slid them back and forth on a string. She wore glasses that distorted words and read a page in a book, took them off and read a page, put them back on and read again.
The doctor tried to make the work fun and most of the time, Maggie and I laughed our way through it. But there were days her eyes ached and she just wanted to play outside. There were days she wondered why her brother didn’t have to do any of this. Days we saw little progress. We pressed through.
Unbeknownst to us, vision therapy is actually a controversial practice. Critics say vision therapy relies on misconceptions of the way the brain functions and places too much emphasis on how the eye takes in information instead of on how the brain processes that information.
Pediatricians rarely refer children to vision therapy and doctors say there is scant scientific evidence that the therapy works. Success stories are anecdotal and the people sharing these stories (myself included) have a vested interest in the success of the treatment. These anecdotes lack the rigorous research necessary, some say, to support the bold claims of therapists and may give parents a false sense of security or hope, a false sense of being able to do something to help a struggling child.
Others believe parents are throwing away thousands of dollars on useless and time-consuming therapies, money and time that could be spent on more productive forms of development assistance.
My questions in response to critics are: is getting therapy any worse than watching Maggie struggle, hoping that she would grow out of it? Is there something wrong with a parent who is willing to try, and pay for, something that seems to work, scientific, rigorous research, or no?
Why do we need scientific proof that something works? The longer I live, the more comfortable I become with mystery, with saying “I don’t know,” and moving forward with confidence anyway.
Maggie’s therapist didn’t make promises she would go to Harvard, as one mother says her therapist told her. He didn’t promise she read at grade level within a specific amount of time. He didn’t promise she would never develop behavior issues, never need glasses, or become the star on the soccer team. He said he could help her read without pain or exhaustion. He explained why words swam around the page, why she missed letters, why she got dizzy when she had to look from the paper on her desk to the whiteboard. He said with hard work, these things could improve.
While medical professionals debate the merits of vision therapy, parents voice support, positive experiences, and significant improvement in their children. These same doctors who decry the cost (out of pocket for most) prescribe medications instead, also at an incredible (though payable by insurance companies) financial cost.
I shy away from taking medication, even for headaches. I lean further toward the natural than the medical. I’m also a writer, a storyteller. I believe in the power of anecdotes and in my own story, my daughter’s story. I don’t know the medical ‘why’ Maggie improved but I’m comfortable with the ‘why’ remaining enigmatic.
Six years later, I have to tear Maggie away from reading. She is an artist and an athlete. She has the confidence to read out loud and studies hard because she wants to be a chemical engineer. This year she has been bumped up to the advanced math track.
Maybe things changed because we put in concerted effort. Maybe they changed because she matured. Maybe I saw what I wanted to see because we paid thousands of dollars, out of pocket, for it. Maybe I’m a sucker for an expensive and time-consuming placebo.
I can’t prove if or why the vision therapy worked. I think it did. And I recommend it. Because I do know that Maggie reads for hours without headaches and without complaining of tired eyes and sometimes, watching her, the scene is so peaceful that I want to cry.
I also know that neither Maggie nor I are worse off than we were six years ago. That might sound like a weak supporting argument, but if doctors can claim that their first principle is to ‘do no harm,’ parents can claim that, too.
Maggie’s eye and brain developed the vision to match her eyesight. More importantly, Maggie herself developed vision. Vision of putting in hard work and finding success. Vision of not experiencing a special need as a weakness to hold her back but a challenge she could rise to. Vision of looking deeper than a surface level struggle to an underlying cause. Vision of empathy for people who have been labeled slow or lazy.
Maggie taught me the vision of compassion. Let the medical experts doubt and debate. I will be thankful we took a risk. After all, isn’t that what parenting is? One big risk, one life to hold and love and help and to whom one must do no harm. This, being a mother, is teaching me every day what true vision is.
Rachel Pieh Jones has written for the New York Times, Runner’s World, the Big Roundtable, Family Fun, Babble, and is a contributing blogger for Brain Child.