My son was diagnosed at his special optometrist appointment yesterday with convergence insufficiency. His eyes don’t work together well. As a result, he often sees double, especially close up, although apparently some of the times he’s whiffed his kicks in soccer is because he was aiming for the “wrong” ball.
It’s not super common, but it is harder to diagnose in twice exceptional kids because they use their high intelligence to compensate. He told us yesterday that sometimes when he looks at the paper, it looks blank to him, so then he looks at the pictures to figure out what’s going on. It’s also obvious (as I had suspected) that he memorizes a story the first time he hears it—memorizes the content, which is why he remembers the big words, but the little ones trip him up. In other words, he’s not just a little smart, he’s A LOT smart. He’s been working hard to fake reading. But he didn’t know he was faking it.
He didn’t know this wasn’t normal.
I looked at a sheet that showed what double vision can look like. The text was unreadable to me. This is what he sees a lot of the time.
The prognosis is good. There is software they can use for a few months, 5 times a week for 30 minutes a day, that can retrain the muscles to work together. A friend of mine has a daughter (also gifted) who had a similar diagnosis and used this software, and now her eyes work fine.
I don’t feel bad for not catching this earlier. I feel awesome for catching it at all. Who ever thinks to ask their kid if they see double? But I did, and he said yes so casually that I understood he didn’t realize that’s not normal.
Yet last night and today, I’ve felt awful. Punched in the gut sad.
Inside my heart, Mama Bear wails: My baby is hurting. Someone hurt my baby. Who hurt my baby? I want to kill them. I want to shred them limb from limb. Whom do I kill? My baby is not OK. Why isn’t my baby OK? Why did this happen? How did this happen? Whom can I hurt to make it better? I hate the world. I love my baby. I just want to hold him and rock him and keep him safe from the whole world.
I want to throw my head back and keen and wail and rock back and forth. My sadness feels primal, straight from the gut.
They hurt my baby. They hurt my baby. They hurt my baby.
It’s not OK with my that my baby is not perfect. That there’s something wrong with him. He is perfect to me! How could anything be wrong with him?! My sweet boy.
I could go into how none of this is logical, how my logical brain is offended that these feelings are even happening, but I won’t bother. I’m sure you’ve already figured that out. I’m a smart girl. I know he will be OK. But I am worried about this Mama Bear part inside me, about how much deep, deep sadness she’s feeling. Grief. She is grieving.
Mama Bear perceives that my son is suffering. In truth, he might be, but only a little. Spelling is hard for him, and other kids are starting to notice, and he feels bad about that. But other than that, he’s been doing OK. A little bored, even. His math grades are good but not great, and it’s clear that the issues have mostly been because he can’t always read the instructions, or because it’s hard for him to make out the numbers as fast as his brain can do the math. Also, I don’t even know how much of his struggles are ADHD and how much are just eyestrain and inability to grasp the meaning in what he can’t see. I bet it’s a lot harder to make yourself concentrate on a test when there are two sets of letters moving around on top of each other. At that point, I would wiggle around in my seat, too.
My boy is blind, Mama Bear moans.
He’s not, though. He doesn’t know life could be any different. When I tell him we will train his eyes to work better together, he looks at me blankly. Whatever, Mommy. He doesn’t know what that means yet.
I have felt in my gut that something was wrong, honestly, since kindergarten, because a kid with his quick wit and huge vocabulary took so long to learn to read. I tried to tell myself I was too anxious. Then last year he was diagnosed with ADHD, and gifted. The ADHD diagnosis wasn’t surprising, but the gifted diagnosis threw me. I felt sad, off-balance, but not like this. I explained it away as feeling bad about what I’d been through myself as a gifted kid, and then I got distracted by my own ADHD diagnosis.
But I knew something else was wrong with him. I saw some articles and posts about this visual convergence issue and wondered. I asked him about it and followed up and made the appointment. In fact, I feel like a frickin’ rock star for figuring it out, because gifted kids are really good at hiding this by compensating with their intelligence.
And I want to sit here and rock and cry, and rock and cry. Why?
I want to make him all better instantly. Yesterday I was so flustered that I accepted a follow-up appointment for late November. No, that’s too late. I need to call back and see if I can move it up. The weeklies have to be at a time that generally works in my schedule, but the first one can be any day I have a space that’s not too disruptive to his school day. Or, hell, I can disrupt his day for the first one.
And we need to move out his dyslexia and dysgraphia screening, because it makes little sense to do it before his eyes are working better. Perhaps we can do it in the spring.
I want my baby to be OK. Rocking, rocking, rocking.
Am I finally feeling all the fear and sadness I didn’t let myself feel after he was born and went straight to the NICU? Or perhaps even before he was born, when I began to understand what it meant that my baby would be born early, that he would be a preemie? That feels like it might be right.
The hardest part of being a mom is understanding that no matter how tight I hold my son, how much I curl around him to protect him, that I can never keep him all the way safe. Even in the womb, what I ate, what I drank, what I breathed, where I went, how hard I worked out—everything affected him. A little tear in my amniotic sac meant that suddenly he was even less protected from the world. I was on antibiotics to keep any nasty bacteria at bay, and the question was not if he would be born early but how early he would be born, and how long he would have to stay in the NICU afterwards while he finished developing.
No matter how attentive I have been, how much I read to him, how much I ran my finger under the words as I said them aloud, I could not prevent or even spot the fate that his eyes make him see double and presumably always have. What a miracle that I read reports of convergence insufficiency from other parents, that I took it seriously, that I trusted my gut, that I asked him about double vision, that I listened, that I found the right eye specialist.
I couldn’t stop that amniotic tear from happening before he was born. In the NICU, I couldn’t teach him to eat faster, or teach him to breastfeed better. And now that he’s older, I can’t make his eyes focus. But I can, and did, pay attention. When I was pregnant, I noticed I was leaking fluid and went to Triage to check it out. In the NICU, I paid attention to his bottles and tracked how much he ate. Once he was home, I got help for my horrible breast pain, and kept weighing him to understand that he wasn’t getting enough milk, and gave up breastfeeding to give us both what we needed. And I am still paying attention now.
Paying attention: The thing my parents didn’t really do well for me. They didn’t see I was struggling. They didn’t realize my anxiety wasn’t normal, and didn’t understand that there were things they could have done to help. Some of these things weren’t widely known anyway, but some of them they could have seen and helped me with. My mother didn’t see how I was taking on too much, turning myself into a mini-adult to take care of her. My father didn’t see that the grief of losing Mama was affecting me years after she ended her own life. My stepmother didn’t see that my overwhelm could be helped.
Perhaps I am mourning more than my son’s struggles. I am mourning mine because they were unseen. I am seeing my struggles overlaid on top of his. I am experiencing double vision, making each story harder to see because of how much they overlap.
Image from Seeing Double: The Causes of Double Vision