Wednesday, March 4, 2009

Go With Your Gut

On Monday, Lego Boy's (our son) eye specialist confirmed that his vision disorder is now successfully corrected. This made me feel the need to reprint an article I wrote for Chicago Parent in November of '07 (names are changed to protect the innocent) in order to spread the word about vision disorders. Through our experience, I've found out they are more common than people think. Also, I must add that the journey is not in any way over for us or most importantly, Lego Boy, but at least now we know what journey we're on. I asked him if he minded me talking about all this and he said confidently, no. He hopes other kids will be helped by his story. So, pass it on...

Misdiagnosis of ADHD

As a parent, our job is to fix whatever is broken in our kids and comfort them with answers and advice. I couldn’t do that for our son. I couldn’t tell him things would be OK because I didn’t know what was wrong.

When Lego Boy started struggling in kindergarten, we were surprised. By second grade, that surprise turned to horror as we watched him academically shut down in the classroom and emotionally shut down at home.

As I looked into his eyes, which were filled with anger, frustration and sadness, I made him a promise. I promised to find answers—answers to why he wasn’t able to keep up with the work at school like his friends and why he wasn’t able to focus in the classroom and reap any rewards from his efforts.

We decided to consult with a private neuropsychologist along with the school specialists. The amount of help and caring given to Lego Boy, my husband and me overwhelmed us. Everyone in Lego Boy's school banded together to help him, from his classroom aide and teacher all the way up to the principal. I was amazed at how much effort a school could put into helping one child.

After 15 hours of testing by the neuropsychologist and three hours of testing at school, the diagnosis came back. "Lego Boy has ADHD."

Lego Boy has ADHD? My gut told me no. My son, my artist, my inventor, my "Leonardo Da Vinci" as I call him, has ADHD? And I need to medicate him? Make a quiet introspective boy even quieter? What will that do to him?

The medication made Lego Boy sick and stole his personality. Each medication we tried seemed to turn a calm, focused boy into a hyper, withdrawn, angry one. I felt like my heart was getting ripped out of my chest each time I gave him a pill. I knew I was going to make him sick for the day and unable to enjoy anything, especially the one thing he always loved, playing with his friends.

So we stopped.

Back at square one.

But none of us gave up.

One Saturday morning, Lego Boy saw a commercial on TV for Sylvan Learning Centers and came running up to me, grabbing my arm, "Mommy! Mommy! Can I go there? Can I? Please? They say they can help me do better in school!"

I reassured him with a hug.

As I continued a new quest for answers, I heard about developmental optometrists from a friend. My neighbor recommended two doctors in Arlington Heights, IL who are supposed to be the best in their field, specializing in treating children like our son who are having difficulties in school and no one knows why.

In August of '07, Lego Boy underwent extensive testing of his eyes.

One of the tests is a 3-D puzzle. He couldn’t do it. I bit my lip and put my hand over my mouth, trying hard to hold back tears as I watched my son struggle to fit in a giant puzzle piece—something that should come automatically to an 8 year old.

Then came his diagnosis: Occular Motor Dysfunction and Saccadic Dysfunction, two visual disorders silently plaguing Lego Boy with blurred vision, lack of depth perception, eyestrain and headaches.

The doctor said Lego Boy's vision problems could very well inhibit him from functioning normally at school, in sports and in life. These types of vision problems can make reading and doing math virtually impossible because kids with eye disorders can’t learn by sight. And because Lego Boy doesn’t have any depth perception, he can’t judge where a ball is in relationship to him, which would explain his frustration with any kind of sports involving a ball.

Children with eye disorders can’t see normally, no matter how hard they try to focus. They have 20/20 vision, but things are blurry and they use an enormous amount of energy trying to keep their eyes from hopping and jumping around while they read. Their head aches. Their eyes hurt.

So instead of learning concepts all day in school, Lego Boy has been trying hard to just focus. The doctor told me many children with vision disorders exhibit behaviors that mimic ADHD and very often get misdiagnosed.

Who wouldn’t fidget in their seat and sharpen their pencil for 20 minutes instead of doing work that requires the use of their eyes?

The doctor explained Lego Boy's treatment plan for the next year or so that he would oversee. It consisted of visits at his office with a therapist along with at-home exercises 20 minutes a day, four days a week. He would be monitored after treatment indefinitely. As I listened I felt like I finally got my solution, my answers, my hope.

And then the skeptic in me took over. "So, after a year of doing all this, what percent chance does he have of seeing results, no pun intended?"

The doctor smiled and said 100 percent—depending on Lego Boy. He could guarantee that when Lego Boy's done with therapy, his frustration level will diminish and he will see direct results from his academic efforts.

One thing the doctor said he can’t fix completely is Lego Boy's handwriting.

"That’s OK," I told him. "So he’ll have handwriting like a doctor."

Is it a vision problem?
One in four kids in a classroom has vision problems and 60 percent of "problem learners" have undetected vision problems.

The College of Optometrists in Vision Development in Aurora, Ohio, has developed a list of signs to watch for in your child:

Physical symptoms
• Frequent headaches or eye strain
• Blurring of distance or near vision, particularly after reading or other close work
• Avoidance of close work or other visually demanding tasks
• Poor judgment of depth
• Turning of an eye in or out, up or down
• Tendency to cover or close one eye or favor the vision in one eye
• Double vision
• Poor hand-eye coordination
• Difficulty following a moving target
• Dizziness or motion sickness

Performance problems
• Poor reading comprehension
• Difficulty copying from one place to another
• Loss of place, repetition and/or omission of words while reading
• Difficulty changing focus from distance to near and back
• Poor posture when reading or writing
• Poor handwriting
• Can respond orally but can’t get the same information down on paper
• Letter and word reversals
• Difficulty judging sizes and shapes

For more information, go to


2KoP said...

Congratulations to you for trusting your gut and for you persisting until you found your answers. You are a great advocate for you son.

As Cate Wallace said, humans derive great satisfaction in identifying and naming things. It's even more satisfying when there is a solution to a problem that's been named. Yay for you and Lego Boy.

Sue said...

So often, and with the best of intentions, our academic community label kids with what they think they know about: ADHD. It is easy because then there are the magic pills that will fix that condition and all will be ok.

Your persistence in the face of this community trying to help your son is wonderful. I remember when our kids were struggling with reading/spelling problems and poor handwriting. Our son way more than our daughter. We were determined to figure out what was going on and eventually discovered a place called "The Reading Institute" in the Fine Arts on Michigan Avenue in Chicago.

Our kids were tutored there turning around reading skills from struggle to success. They still have a few problems with spelling and handwriting but have each been extremely successful in their lives.

Yet, throughout their school years, I had to sometimes do battle with part of the school community that did not understand the complexity of reading problems. Some teachers did understand, others did not.

Finding out about your son's vision problems and then fixing them is akin to giving him back his future. It says a great deal about your perserverance and solution-oriented way of being. Lego boy has great parents.

Along the way you have also spread the word about ocular issues. So many kids will be helped by that just as kids are helped when teachers and others learn about the complexity of reading problems. Keep up the good work.