Readers and bots, apologies for letting this site grow cold! When I launched the blog I was all excited about writing my first novel. I did that; it languishes unpublished. That was a great experience, but now I have a day job again.
I've also been navigating a slew of challenges with my son, thinking a lot about what I wish I'd known ten years ago, when he was born.
To that end I plan to post more, taking a deeper dive into some topics, maybe offering a few listicles on what to look for and resources I've found helpful. There are lots of moving parts, especially when it comes to the brain and body and neurodiversity. It's all connected.
For now, some quick background in the form of this essay I wrote last fall (which was—ahem—given a pass by the parenting section of a major newspaper):
"I thought I was on top of it all. As my son grew from infant to toddler, I carefully marked off his milestones: formula intake and output, sitting up, babbling and cruising. Even drawing a circle, I was surprised to learn from our pediatrician: make sure he can do that.
It was all fine, developmentally on track—and a huge relief since I had given birth to Luke (not his real name) at the advanced maternal age of forty-one. My husband shook his head and called me a helicopter, but I was just being diligent. Better to address any potential problems as soon as possible. Early intervention, I knew, was key.
So I watched my boy. But even the keenest eye and best intentions aren’t always enough. You need to know what to look for.
Years ago in music class, Luke was the baby crawling away from the circle to climb on the bench and look out the window, stomping his tiny moccasins. At Little Gym he would wander away from the group to examine how the bar apparatus was mounted to the floor. He’s independent, the instructors told me. Marches to the beat of his own drum.
Fast forward to first grade: online learning during Covid-19. Luke would forget his whiteboard, lose his language arts book, not notice the class had turned the page. His frustration was swift and disproportionate. Chewed-up pencils flew across the dining room.
By the end of that school year we had a diagnosis: attention-deficit/hyperactivity disorder (ADHD).
Okay, I thought, we’ll figure it out. I found books and videos, websites and podcasts. I learned ADHD usually co-occurs with other conditions, like dyslexia; dyscalculia or dyspraxia (very broadly, trouble with math or movement); or depression and anxiety. I continued to watch my son.
Luke had started to read simple books before kindergarten and he tested into our district’s gifted and talented magnet program (we ended up sending him to the local school instead). He was never one to pick up a book for pleasure, but by third grade he was actively resisting all reading. When he did read aloud, he inserted words that weren’t there and omitted words that were.
I scheduled another battery of tests—a second neuropsychological assessment—to check for learning differences. The results came back negative for specific learning disorders and blamed Luke's ADHD for his choppy reading. “He was observed to skip words and replace words... which are common errors for children with ADHD because reading requires sustained attention to stay on track.”
This finding brought no relief and left me even more unsettled. Luke hated school and felt stupid; attending class gave him high anxiety. He started getting headaches (like me, with my lifelong migraines). In his beginner guitar book he would immediately memorize a new song, averting his gaze from the page.
I felt like we were missing a puzzle piece. It just seemed so unlikely that typical ADHD symptoms, like poor focus, could drive such extreme avoidance. 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.
One nugget from Luke's recent assessment had identified weakness in his motor coordination and visual-motor coordination. This triggered recommendations for yet more specialists and months-long waiting lists.
Finally, just before fourth grade in August, after an occupational therapy evaluation and two specialized optometric exams, we discovered that Luke's eyes didn't work right. His cluster of technical-sounding diagnoses amounted to deficiencies in:
visual acquisition skills, or the way the brain and eyes work together to gather information (eye tracking, teaming, and focusing); and
visual processing skills, or making sense of what the eyes are seeing.
In other words, to Luke a block of letters, numbers, or musical notes was basically gobbledygook.
It turns out he has spent his whole life deciphering printed characters that are blurry, doubled, moving, or even floating. It requires a tremendous amount of energy for Luke to interpret up-close material. Nearly all activities are impaired, from reading and writing to lining up math problems, to following a hockey puck and blocking a soccer ball shot on goal.
Between his vision problems and ADHD, Luke must have been compensating like a madman just to stay at grade level. It made my heart hurt.
I was equal parts relieved we had found the answer and guilt-stricken I hadn’t noticed it sooner—since I had spent the past ten years on high alert. Earlier intervention might have saved Luke a shred of self-esteem. His low confidence and inability to see himself as a smart person who can learn is fairly ingrained by now, which is the greatest tragedy.
The issue was stealth. Luke's eye problems are not related to visual acuity. The breakdown is in the communication between the brain and the visual system. (I found out this breakdown can be connected to "retained primitive reflexes," which is perhaps a topic for another time.)
And here’s the rub: kids don’t know it’s not normal to see double letters and adults have no reason to ask.
One optometrist told us around 10% of the population has these types of visual deficiencies, which seemed high for a problem I’d barely heard of, even as I was digging deep into the special-needs world. The disorder is often missed or misdiagnosed as dyslexia. Most schools and pediatricians screen for distance vision, which won’t catch it.
Armed with fresh search terms, I went back online and found a study suggesting a three-times greater risk for convergence insufficiency among the ADHD population, and vice versa. Adding to the confusion, many symptoms overlap (resisting close tasks, decreased concentration, trouble with memory), making proper diagnosis even harder.
The good news: Luke will probably be completely cured after around nine months of vision therapy, which requires a developmental or behavioral optometrist who offers “binocular optometry.” Thankfully, we have such providers in our city.
The bad news: nothing is fast or cheap. It took us six months to get from a neuropsych assessment to an OT evaluation, and Luke has to miss school every Tuesday morning because the optometrist’s waiting list for after-school slots has twenty kids on it. We’re fortunate to be able to pay out of pocket for many of these services.
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.
Two years ago a friend’s child underwent vision therapy and it still never crossed my mind that Luke might need it too. Her son was different from mine. I didn’t know the signs.
I learned that the American Optometric Association recommends infants get their first eye exam at around six months old. Visual deficits like Luke's can be detected even in babies.
It’s not too late for my boy—I know that. I just wish I had asked him, at some point, to describe what he saw on the page."
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