The Early Days, Part 2
"He thinks we're crazy," I say to my wife.
"We're not."
"I know we're not."
It is 2010. Tess isn't quite a year old. We're in the exam room of our local pediatric ophthalmologist. He's in his fifties, with graying hair, and has had just about enough of us. For the moment, he's left the room, saying he has to check on something. I suspect, however, that he's only out there to take a break from us and Tess and collect himself.
We have a deal, my wife and I. We've agreed to trust Tess's doctors, since they're the pros. We've also agreed that, even though my wife is a doctor, she should never be forced to act as Tess's doctor. This is because my wife's a gastroenterologist who doesn't work on kids--only adults. It wouldn't be fair to put that burden on her.
And yet, in spite of our deal, here we are, in the exam room, second-guessing Tess's eye doctor. He says Tess's optic nerve is healthy, that her eyes work properly, that they're nothing wrong with her vision, apart from some mild nearsightedness, which can be fixed with regular old eyeglasses, just like anybody else wears who doesn't have perfect vision. He's checked her out a bunch, and he's sticking to his story.
Thing is, she doesn't see. Her eye muscles work, and the eyeballs rotate, and the eyelids blink and all, but in her eyes there's an unmistakable lack of visual comprehension. Nothing registers. She never makes eye contact with us. Or with anything, for that matter. Bring an object in front of her face and she generally won't move her eyes to meet it. Wiggle it around a few times, and still nothing happens. This is true even if the object is a preferred toy, or one that makes noise. If you're near a window in the daytime or any other bright light, forget testing her vision; she'll fixate on the light, head tilted to the side, as if entranced. She's fixed, vision-wise, in a stupor, almost all the time. We get almost no feedback from her. And recognizing our faces? We're leagues away from that.
But the most remarkable thing happens whenever we go to see the eye doctor. He remarks on her unusually small pupils. They're like pinpricks. He gives her eye drops, to dilate her eyes, and tells us to head back to the waiting room for fifteen minutes. And then, while we wait, as her eyes change to admit more light, she starts going bananas. The fog in her vision lifts. She sees us. Really sees us, as if for the first time. There's eye contact. Who are you wonderful people? she seems to be thinking. We have a back-and-forth with her, without using words. It is revolutionary. Whenever we leave that office--her pupils the size of dimes, her arms waving at every object she sees--we say the same thing: "She's in there."
When the eye doctor returns, I point this out to him, how his dilation brings her alive. Could she be not getting enough light otherwise? I ask. Is there some way to allow her eyes to let in more light each day? He gives me a non-answer answer. There's nothing more he can do, he says. He wants us out of his office ASAP. Scribbling out a prescription for Tess's eyeglasses, he sends us on our way without so much as a good luck or nice to see you. In short, he makes us feel crazy. Like the sort of asshole parents who come in with some spotty internet research and presume to tell him how vision works. Except we don't have any internet research. All we have is this, I don't know, feeling that something else is afoot.
The day after the appointment, I foolishly hope that she'll wake up with her eyes still dilated from the day before, that she'll turn into this alert kid who can't be stopped from grabbing everything in front of her, like other kids her age. But she doesn't. She wakes up like before: stuck. Unseeing.
Weeks pass. We don't talk about the eye doctor or even bring up his name. We focus on the other stuff with T, like feeding and brain scans. And then, hope: a teacher of the visually impaired takes a look at Tess one day and mentions cortical visual impairment, or CVI. It's a condition that makes people unable to process visual information, even if their eyes work fine. It's a brain problem, not an eye problem. Some signs of CVI:
- light-gazing, or the inability to tear your eyes away from windows or bright lights (Check.)
- attraction to yellow and red objects over other colors (Check.)
- only looks at things that are in close range (Check.)
- not looking at faces (Check.)
In time, we have Tess evaluated for CVI. It's pretty clear that she has it. Of the ten or so different signs, she's got almost all of them. It is a real condition. Other kids have it. There's a doctor named Christine Roman who's the world's expert on it.
In other words, we aren't crazy. We were right to feel the way we did in the eye doctor's office. Tess really can't see well. One vision professional describes it to me this way: you know those "hidden pictures" line drawings of a room, where you have to find the baseball bat hidden in the folds of the drapes, or the fork hidden in the lines of the wooden table? That's how Tess sees the whole world of objects. Once you find the fork, you know it's there and can come back to it. But as you're searching, it takes time and effort to find it.
Fortunately, there's something we can do. Tess is at the bottom of the CVI range, meaning her functional vision is pretty crappy. But we can intervene. We can train her brain to process visual information, thus moving her up the CVI range. Some of these interventions are about simplifying her visual field--presenting objects on a black background, blotting out bright lights, facing her away from windows. Other strategies incorporate the CVI favorite colors, yellow and red, and we special-order a red spoon for mealtimes.
We discover a book and website about CVI called Little Bear Sees. We collect stories from other families about what works. We find CVI groups on Facebook who post their top-10 CVI iPad apps and we download every one of them.
Eventually we meet the renowned CVI expert Christine Roman, and she evaluates Tess and confirms that yep, she has CVI. We find a teacher of the visually impaired to work with Tess regularly. The interventions begin. Tess's progress is slow. We worry that we waited too long, that--because people like the eye doctor told us we were nuts for thinking something was wrong--we didn't intervene soon enough.
A couple years later, it's time for Tess to start preschool. We shop around for the right place. Children's Odyssey is the clear choice. One big factor in our decision is that their staff knows about CVI and is willing to bend over backwards to create a visual classroom environment that will help Tess kick ass every day.
I can't emphasize enough how grateful we are to the vision professionals who've worked with Tess, who've spent hours helping her find a toy that's right in front of her eyes. Or how much we think about Dr. Roman and her work on CVI, and what she did for Tess, and what she continues to do. Or how thrilled we were to find other people in the world who are dealing with CVI. We may not have an overarching diagnosis for Tess, but we do have this one, and finding a community of problem-solving parents online has made us infinitely stronger.
When T shows up for school that first day, we have no idea what she'd be able to do. She'll move up the CVI range and blow our minds in the years to come.
If you're out there and you know in your heart that something's up with your kid, but someone's trying to make you feel like you're nuts, I feel for ya. You're not nuts. You know your kid best. Keep looking. The answer could be out there.
"We're not."
"I know we're not."
It is 2010. Tess isn't quite a year old. We're in the exam room of our local pediatric ophthalmologist. He's in his fifties, with graying hair, and has had just about enough of us. For the moment, he's left the room, saying he has to check on something. I suspect, however, that he's only out there to take a break from us and Tess and collect himself.
We have a deal, my wife and I. We've agreed to trust Tess's doctors, since they're the pros. We've also agreed that, even though my wife is a doctor, she should never be forced to act as Tess's doctor. This is because my wife's a gastroenterologist who doesn't work on kids--only adults. It wouldn't be fair to put that burden on her.
And yet, in spite of our deal, here we are, in the exam room, second-guessing Tess's eye doctor. He says Tess's optic nerve is healthy, that her eyes work properly, that they're nothing wrong with her vision, apart from some mild nearsightedness, which can be fixed with regular old eyeglasses, just like anybody else wears who doesn't have perfect vision. He's checked her out a bunch, and he's sticking to his story.Thing is, she doesn't see. Her eye muscles work, and the eyeballs rotate, and the eyelids blink and all, but in her eyes there's an unmistakable lack of visual comprehension. Nothing registers. She never makes eye contact with us. Or with anything, for that matter. Bring an object in front of her face and she generally won't move her eyes to meet it. Wiggle it around a few times, and still nothing happens. This is true even if the object is a preferred toy, or one that makes noise. If you're near a window in the daytime or any other bright light, forget testing her vision; she'll fixate on the light, head tilted to the side, as if entranced. She's fixed, vision-wise, in a stupor, almost all the time. We get almost no feedback from her. And recognizing our faces? We're leagues away from that.
But the most remarkable thing happens whenever we go to see the eye doctor. He remarks on her unusually small pupils. They're like pinpricks. He gives her eye drops, to dilate her eyes, and tells us to head back to the waiting room for fifteen minutes. And then, while we wait, as her eyes change to admit more light, she starts going bananas. The fog in her vision lifts. She sees us. Really sees us, as if for the first time. There's eye contact. Who are you wonderful people? she seems to be thinking. We have a back-and-forth with her, without using words. It is revolutionary. Whenever we leave that office--her pupils the size of dimes, her arms waving at every object she sees--we say the same thing: "She's in there."
When the eye doctor returns, I point this out to him, how his dilation brings her alive. Could she be not getting enough light otherwise? I ask. Is there some way to allow her eyes to let in more light each day? He gives me a non-answer answer. There's nothing more he can do, he says. He wants us out of his office ASAP. Scribbling out a prescription for Tess's eyeglasses, he sends us on our way without so much as a good luck or nice to see you. In short, he makes us feel crazy. Like the sort of asshole parents who come in with some spotty internet research and presume to tell him how vision works. Except we don't have any internet research. All we have is this, I don't know, feeling that something else is afoot.
The day after the appointment, I foolishly hope that she'll wake up with her eyes still dilated from the day before, that she'll turn into this alert kid who can't be stopped from grabbing everything in front of her, like other kids her age. But she doesn't. She wakes up like before: stuck. Unseeing.
Weeks pass. We don't talk about the eye doctor or even bring up his name. We focus on the other stuff with T, like feeding and brain scans. And then, hope: a teacher of the visually impaired takes a look at Tess one day and mentions cortical visual impairment, or CVI. It's a condition that makes people unable to process visual information, even if their eyes work fine. It's a brain problem, not an eye problem. Some signs of CVI:
- light-gazing, or the inability to tear your eyes away from windows or bright lights (Check.)
- attraction to yellow and red objects over other colors (Check.)
- only looks at things that are in close range (Check.)
- not looking at faces (Check.)
In time, we have Tess evaluated for CVI. It's pretty clear that she has it. Of the ten or so different signs, she's got almost all of them. It is a real condition. Other kids have it. There's a doctor named Christine Roman who's the world's expert on it.
In other words, we aren't crazy. We were right to feel the way we did in the eye doctor's office. Tess really can't see well. One vision professional describes it to me this way: you know those "hidden pictures" line drawings of a room, where you have to find the baseball bat hidden in the folds of the drapes, or the fork hidden in the lines of the wooden table? That's how Tess sees the whole world of objects. Once you find the fork, you know it's there and can come back to it. But as you're searching, it takes time and effort to find it.
Fortunately, there's something we can do. Tess is at the bottom of the CVI range, meaning her functional vision is pretty crappy. But we can intervene. We can train her brain to process visual information, thus moving her up the CVI range. Some of these interventions are about simplifying her visual field--presenting objects on a black background, blotting out bright lights, facing her away from windows. Other strategies incorporate the CVI favorite colors, yellow and red, and we special-order a red spoon for mealtimes.
We discover a book and website about CVI called Little Bear Sees. We collect stories from other families about what works. We find CVI groups on Facebook who post their top-10 CVI iPad apps and we download every one of them.
Eventually we meet the renowned CVI expert Christine Roman, and she evaluates Tess and confirms that yep, she has CVI. We find a teacher of the visually impaired to work with Tess regularly. The interventions begin. Tess's progress is slow. We worry that we waited too long, that--because people like the eye doctor told us we were nuts for thinking something was wrong--we didn't intervene soon enough.
A couple years later, it's time for Tess to start preschool. We shop around for the right place. Children's Odyssey is the clear choice. One big factor in our decision is that their staff knows about CVI and is willing to bend over backwards to create a visual classroom environment that will help Tess kick ass every day.
I can't emphasize enough how grateful we are to the vision professionals who've worked with Tess, who've spent hours helping her find a toy that's right in front of her eyes. Or how much we think about Dr. Roman and her work on CVI, and what she did for Tess, and what she continues to do. Or how thrilled we were to find other people in the world who are dealing with CVI. We may not have an overarching diagnosis for Tess, but we do have this one, and finding a community of problem-solving parents online has made us infinitely stronger.
When T shows up for school that first day, we have no idea what she'd be able to do. She'll move up the CVI range and blow our minds in the years to come.
If you're out there and you know in your heart that something's up with your kid, but someone's trying to make you feel like you're nuts, I feel for ya. You're not nuts. You know your kid best. Keep looking. The answer could be out there.
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