Emily’s Eyes: The disability I didn’t see

(First Published: Oct. 2004 Live Free, Learn Free)

As home schooling families, most of us look with disdain upon the labels the public schools place on our children. We tend to think these are widely used terms to explain away the school’s inability to teach every child exactly the same things in the same manner. Some of us have even pulled our children from public schools because of these labels. Words like slow-learner, attention deficit, delayed and even gifted make us shudder.

I am no different. When I began home schooling four years ago, I was determined to focus on who my children were individually. To learn with them and love them in full acceptance of who they are, not what a test or school system had told me they should be. With that in mind, let me introduce my daughter Emily.

At age 7, my daughter could recite the Preamble of the Constitution, say her times tables to the fives, name the planets in order including their physical make-up, and carry on an in-depth debate with my husband concerning Neanderthal Man versus Adam. What she could not do was tell me that “k”-“a”-“t” made the word cat. Now some would say; relax, she’s just not ready. The problem being that she was ready. Emily was so desperate to be able to read and I was fast running out of ideas on how to make it possible for her.

We did figure out a few things. She could look at a whole word and memorize what it was, but if I were to say “Sound it out”, I might as well have been saying, “Go to your room”. I struggled with myself to keep others opinions from creeping into my own thinking. Deep down I knew she wasn’t learning impaired or just not applying herself. I knew she could do it and it fell on my shoulders to figure out how to reach her.

We struggled for almost a year and Emily did fairly well. Slowly but surely she began to read as I adapted to her needs (and thanked my lucky stars she wasn’t in public schools) but she still was not reading independently. She still had no way to accurately interpret a new word when she came to one. Don’t even get me started on her spelling!

Then, someone outside the family offered to help tutor Emily and tried something I had not. He held up a flash card with a single word on it and told her what the word was. He then asked her to say the word, call out the letters she saw that spelled the word, and then say the word again. She would only say about a half of the letters on the card and never realize that something had been left out!

Next came the golden question: “Has she ever been TESTED for a visual DISABILITY?” Tested and disability were words that I never wanted to hear again, so my walls went up. I coldly informed him that we had her vision tested and it was 20/20 and I did not feel she had dyslexic tendencies (this being the only visual disability I was familiar with). Fortunately for me, this friend did not give up on my daughter or me. He patiently explained what he knew and whom he knew that might help.

In our attempt to save money, we had originally gotten Emily’s sight tested, but not her eyes, and never realized that there was a difference. A good optometrist will look not only at how a child sees (the classic 20/20) but also how the eyes work and what a child sees.

Had the second optometrist come out after the exam and said, “Your child has a visual disability, bring her back to see me every week for the next 8 months”, I would have laughed and never followed through. But, I watched that second exam and saw my child fail at things I’d never thought to check and that should have come easily. Simple things like being able to follow an object with just her eyes.

Do you remember the last time you played “tug-of-war”? Imagine the strain and determination as you pulled with all your might against a force of almost equal magnitude trying to drag you in an opposite direction. Remember the frustration of trying with all your might and still not knowing whether you would win or lose? Then, suddenly the answer is completely evident as you find yourself hurtling forward, or backward, and the game is over. This is the same battle that my daughter faced, every time she tried to read. The human eyes are meant to work together. They focus in on one area or object and send a message to the brain of what they see. The brain puts the two corresponding images together into the big picture. Emily’s eyes did not know how to work together. While one eye may have been focused on the word in question, the other might be looking at an entirely different word, each would send what they saw and the brain would have to decide who was right. No wonder when I said “sound it out” it would lead to ten minutes worth of trying to figure out how a word such as “family” suddenly had a “p” sound in it! Had I not seen it, I would never have believed that the word disability should be attached to my child. Now I knew, and because I was willing to accept it, we could also fix it.

Emily spent the next eight months working daily to “train” her eyes to work together and truly see. She learned things like how to hit a baseball, walk a balance beam, work a maze without hitting the boarding lines, follow a complicated rhythm, see at a distance and quickly accommodate to close-up work and oh yes, read. None of these things would have ever occurred to me as being important in helping Emily to read, but that’s what she needed.

What did I learn?

I don’t know everything.

Ask for help when you need it.

Don’t disregard the system when it might offer that help.

Sometimes labels open doors to answers on how best to help your child.

Visual disabilities are real and affect as many as 25% of our children, and mostly go undetected.

How to hit a baseball, walk a balance beam, work a maze, follow a rhythm and teach Emily to read.

Does any of this sound like a child you know? If this information can help another learn to see what I didn’t, then I’d gladly tell my story again and again.

If you would like to know more, help and information is readily available on the Internet, as well as referral and doctor locators, at sites such as: www.pavevision.org, www.covd.org, www.oep.org, and many others. Be informed, be watchful and open your eyes to what I couldn’t see and what your child sees can be beautiful.

Alison Palmer lives with her husband, Robert, and four children Samantha, Emily, Justin and Jacob in Michigan where she gave up nursing in favor of nurturing. Her days are filled with mud pie experiments, trips to space in cardboard boxes, play-dough in the carpet, and warm cookies and milk. She feels that her greatest joys will always come from seeing the world through her children’s eyes.