As essay I posted on Medium (it's similar to the previous one on this site but better, with links).
As a new parent, I thought I was on top of it all. I marked off our son’s milestones: sitting up, babbling, rolling over. My husband shook his head, but I knew the importance of early intervention.
Luke (not his real name) was the baby in music class crawling away from the circle to climb on the bench. At Little Gym he would wander away from the group, inspecting the hardware on the balance beam. He’s independent, the instructors told me. Marches to the beat of his own drum.
By third grade we knew about Luke’s ADHD but couldn’t figure out why he refused to read and hated school. Learning was hard. Sitting in class gave him anxiety. At home during guitar practice, he immediately memorized the song in the book, averting his eyes from the page.
When a friend suggested Luke might need glasses, I dismissed it: “He has 20/20 vision.”
If only I knew then, what I know now! This issue was stealth.
I arranged another batch of neuropsychological tests. They didn’t turn up any specific learning differences, instead blaming Luke’s choppy reading (when he was forced to do it) on ADHD.
That still didn’t seem right, though. Would trouble focusing really drive such extreme avoidance?
1. Keep pushing. Even experts won’t catch everything.
Professionals can be a lifeline for parents in search of a diagnosis or a treatment plan. I was wondering specifically about dyslexia. But I didn’t know what I didn’t know, and the examiner wasn’t familiar with what ended up being the root cause of Luke’s struggle.
The testing had given us one clue: it identified weakness in Luke’s visual-motor coordination — which was news to me. Luke had always been strong and he seemed to hold a pencil correctly. So we followed this lead, which triggered recommendations for yet more specialists and months-long waiting lists.
Finally, just before fourth grade last fall, after an occupational therapy evaluation and two specialized optometric exams, we found out Luke’s eyes weren’t working right. His diagnoses amounted to problems with:
· visual acquisition, or how the brain and eyes work together to gather information (eye tracking, teaming, and focusing); and
· visual processing, or making sense of what the eyes are seeing.
In other words, a block of text was essentially gobbledygook. Luke had spent his short life deciphering printed characters that were blurry, doubled, moving, or even floating. I learned it takes so much energy for him to decode up-close material that not much is left for comprehension.
2. Check eyes. The American Optometric Association recommends infants get their first eye exam at six months.
Deficits like Luke’s can be detected even in babies. By three months, their eyes should be able to focus and track objects. Ask your pediatrician or optometrist about these abilities — and if they don’t know what you’re talking about, try someone else.
Keep in mind: kids don’t know it’s not normal to see double letters and grown-ups have no reason to ask. Even many adults today are unaware of their own vision problems — they don’t realize the rest of us aren’t squinting or closing one eye or tilting our heads to enjoy a novel.
3. Have your child read out loud. Skipping words or lines, misreading, or inserting words are warning signs, e.g., saying “this” for “there,” adding “the,” omitting “its.” Reading two words together, then another two, and so on, or “chunking” words, can be another sign.
Luke was an early reader who had tested into our district’s gifted program (we sent him to the local school instead). But between his vision and attention struggles, he must have been compensating like a madman just to stay on grade level.
It hurt my heart. I had been on high alert for 10 years and still missed it. Earlier discovery might have saved Luke a shred of self-esteem. His low confidence and inability to see himself as a smart person who could learn had become ingrained, which was the greatest tragedy.
I found one study suggesting a three-times greater risk for the eye condition convergence insufficiency among the ADHD population, and vice versa. But it’s not just neurodivergent kids. According to the College of Optometrists in Vision Development, 10% of all children have a vision impairment significant enough to impact learning, and some 80% of school learning is accessed via vision.
4. Watch for other signs, like reversing letters and numbers past an appropriate age (around seven years old, according to some specialists).
Luke’s broad category of visual disorders is often misdiagnosed as dyslexia (they are not mutually exclusive), or missed completely. My friends and family — certainly Luke’s teacher and principal and an entire clinic of neuropsych professionals — had never heard of such a thing. Most schools and pediatricians check distance vision (20/20), which is different. Luke’s issues involve near and binocular vision, or viewing up-close material using both eyes together to make sense of written words.
In her book, The Hidden Link Between Vision and Learning, Wendy Beth Rosen cites a study by Ohio State University that found 69% of students with Individualized Education Plans were identified as having treatable vision problems, yet would pass a typical school screening. (She and others say vision disorders are often mistaken for ADHD; Luke has both.)
5. Encourage schools to screen for near, binocular vision. Bonus: this could improve test scores.
6. Teach teachers. Spread the word that for struggling readers, consider visual acquisition or processing disorders, in addition to dyslexia and other common culprits. Gently ask students if letters “do anything” on the page.
This journey has turned me into something of a part-time advocate. Vision is different from eyesight. People like Luke have a miscommunication between the brain and the visual system.
Fortunately, the brain can grow new pathways. Luke is in his eighth month of vision therapy with a developmental (sometimes called behavioral) optometrist—essentially a specialist who treats functional vision problems, such as difficulties with binocular vision, eye movements, and depth perception. I joined a Facebook group for parents of kids doing vision therapy; it has 34,000 members.
Another great resource I’ve found online is Dr. Juanita Collier, a behavioral optometrist and vision therapist with her own podcast, It Could Be Your Eyes, who speaks about advocacy, learning, and the racial disparity in access to screenings and therapy.
Nothing about our experience has been fast, easy, or cheap, and this population is under-served. It took six months to get an OT evaluation, and Luke misses school every Tuesday morning because the waitlist for after-school therapy slots has 20 kids. Stories like this are common in other regions too.
Luke’s near vision is much better. He started the school year below proficient according to a standardized reading exam, and since then his score has jumped by 268 points. His self-esteem has improved by leaps and bounds. Still, a reading assessment indicates he’s almost a year behind where he should be heading into fifth grade. I’m tutoring him and crossing my fingers.
Looking back, were there red flags? A few times when Luke was a baby, I pointed to a toy across the room and he didn’t seem able to follow my finger. As he got older he had trouble doing jumping jacks like other kids. Nothing big — surely no need to somehow “follow up.” I know now that those quirks are likely related to the development of Luke’s visual system.
I just wish I’d learned about all this a long time ago. Please: tell a friend!
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