Children who have a disability and are also smart are called twice exceptional, a term that makes me want to punch something. When taken literally the term makes sense, in that exceptional can mean a rare instance, but I doubt this is what the inventors of the term were thinking. Instead, it sounds like a term coined to make people feel better about the first exception, the disability, though what it ends up doing is making me feel worse about the second exception, the intelligence, as though being smart and being disabled are two equal burdens one must carry through life.

The first time I heard the term was in reference to my daughter who, at five years old, had failed to qualify for New York City’s gifted and talented program. This made her not exceptional at all, only disabled, because she’s legally blind. My older child, now almost nine years old, had been in the gifted program for four years by then. He isn’t legally blind, so I suppose he is only singularly exceptional.

I wanted my daughter, whom I’ll call Nora, to be admitted to the gifted program primarily for her own safety. I had heard that kids were getting knocked over in the yard at our local school. My son attends fourth grade there, and a girl in his class had been pushed down at recess. It happens all the time, he said. Although he’s in the gifted program, it’s been discontinued for the lower grades.

I thought about my daughter, legally blind from birth due to a genetic condition, and how she is “slow to see.” It takes her longer to fixate and focus on an object than people with normal vision. As a result, she doesn’t see the kid on the playground about to fly a buttonhook around her on his scooter. She will probably never use the expression “out of the corner of my eye” because she simply doesn’t see things that way. She won’t duck out of the way when a static-haired kid sends a kickball loose from the designated kickball part of the asphalt yard, the ball hurtling like a bomb toward her face. Sometimes she walks into people.

So I called the school to talk to the parent coordinator, which was what the Department of Education’s massive book on kindergarten said to do. The DOE administers New York City’s public school system and sends out the book to all parents of four year olds. The book is nearly identical to the phone book in terms of both size and usefulness. I spent many hours with that book, flipping through pages, reading descriptions of schools across all five boroughs, noting that it lacked the single piece of information I needed, which was: At which school will Nora not get smacked in the face with a kickball?

The parent coordinator asked me what my concerns were. I described my daughter’s condition and said that while I really wanted to send her to the school—in part because it is across the street from our house, and in part because it’s one of those schools that people move to Brooklyn to attend—I was worried about the yard.

“Yes,” she said. “I’d be worried about the yard too.” Then she told me that the school’s enrollment for next year was going to go up, from 700 children to 900 children. “Wow,” I said, because I didn’t know what else to say. Of course, said the parent coordinator, the school would do whatever was needed to accommodate my daughter, but, you know, if she were the parent, she’d send her kid somewhere else.

I hung up the phone and wondered where else I could possibly send her. We couldn’t afford private school, and preferred the diversity of a public school. And in Brooklyn it’s not as easy as calling up another school, explaining your situation, and asking for admission. There are waiting lists. There is real estate. There are people with money and power and decisions that get made without any transparency in what I have always imagined to be candlelit rooms filled with people wearing cloaks.

My husband and I discussed the situation, and I spent more time flipping through the phone book of schools.  I talked to people at the playground, which is where all of the real information about school choice can be found, and in the end we decided two things.

First, Nora would take the gifted test, which requires students to score above 90th percentile in order to be eligible for the program. PS 32, the school with the gifted program closest to us, was small, so we wouldn’t have to worry about her getting knocked over in the yard or lost in the lunchroom. There were two gifted classrooms, which meant that she would spend the next six years with the same group of about sixty kids. She wouldn’t have to explain her condition every year. She wouldn’t be the weird kid who needed to sit at the front and wield an arsenal of technology in order to see the board. She’d just be that girl with some vision issues who we had all known since kindergarten. They would grow up with her and, one would hope, not tease her when she whipped out her assorted magnification devices to see something.

Second, we would apply to another nearby school that had inclusive classrooms, which means that children who are exceptional in a way that doesn’t involve scoring well on gifted tests are placed in the same classes as unexceptional kids. The classes were small, the yard was small, the lunchroom didn’t have the air of an overstuffed prison cafeteria. And there were two teachers per room. This all seemed good, except that Nora didn’t qualify as disabled.

You might wonder: What does a kid have to do to qualify as disabled these days? The answer is: You have to be more than just legally blind. You have to be legally blind with a measurable developmental delay. And despite being legally blind, Nora doesn’t have any delays. If anything, she has advances. She started reading at four and a half. She writes full sentences in atrocious handwriting with spelling that only a mother could decipher. She does simple math and, for some reason, loves to count the number of lights in restaurants. While her physical development has been on the slow side—she walked at eighteen months and at five was just learning to alternate her feet as she climbs up and down stairs—it hasn’t been slow enough to qualify as a delay.

So we would have to apply to the general education part of the school, which everyone said was impenetrable. You’ll never get in, they said. Forget about it. We applied anyway.

I wrote a nice email to the principal explaining why I thought the school would be great for our daughter. I mentioned that we were actively involved in our son’s school, which was a lie. I’ve never even been to a PTA meeting, but it’s never too late to start. And then I called 411 to find out how to register a legally blind child to take the gifted test.

After a lot of transferring of calls and numbers that rang and rang with no answer, I eventually found my way to a human being who explained that when I registered online for the gifted test there would be a box to check off requesting a large print test. I was to check off this box.

“Oh,” I said. And I went online and checked off the box.

It seemed like there should have been a place on the form where I could explain my daughter’s specific situation, but there wasn’t. I wondered what the large print test would be like. How large was it? Just a little large or really large? Nora was four; She had never taken a test before, so I didn’t know if there was something else I was supposed to ask for. Maybe a large print test would be fine. Or maybe it wouldn’t.

Being visually impaired isn’t like being totally blind, in that there is an enormous range of ability and vision; What one person can see easily another can’t even begin to make out. The totally blind are given either oral or Braille tests, but many visually impaired children don’t read Braille. Nora sees 20/150 with her glasses on. Some visually impaired people with her condition see as well as 20/40. Others see 20/400. Some have depth perception issues. When Nora was first diagnosed, I watched a woman on YouTube demonstrate her own struggles with depth perception. She held a water bottle in front of the camera and moved her hand toward it, stopping a few inches before she touched it. “My eyes tell me I’m touching the bottle,” she said. “But my hand is telling me I’m not.” Some days Nora has problems with depth perception and some days she doesn’t.

Her condition also makes her photophobic, so the lighting makes all the difference in her vision. On a sunny day, I’ve seen her walk straight into a water fountain or pause at the top of a set of stairs to feel with her foot exactly where the steps start. On a cloudy day she can race down the same set of steps.

Twice a week, for the last three and a half years, my daughter’s vision teacher, Lindsay Orcutt, has come to the house to work with her on strategies for using the vision she has. Amazingly, the visually impaired can learn how to see things. When Nora was an infant, the sessions mostly consisted of holding flashing lights in front of her and trying to get her to reach for them. Then she graduated to putting small objects into holes, which turns out to be very hard to do when your eyes wiggle back and forth and you’re not entirely sure where the hole is. Later they did puzzles. You haven’t really experienced frustration until you’ve watched a toddler attempt to fit the corner piece of a puzzle into the middle of the puzzle for the four thousandth time. My daughter was able to see that a piece of the puzzle was missing, and understand which piece it was (i.e. we need the cow’s tail), but she simply could not put together a picture in her mind of what that puzzle piece looked like and then find it in the box. Eventually she solved the problem by memorizing the order in which the puzzle pieces went together. I’d hear her talking through the puzzle, “Now the cow’s head, now the goose, now the duck…” until the puzzle became whole, a shiny poster on the floor, the result of my daughter’s dual exceptionalities writ large.

I told Lindsay about the gifted test and the problems with the yard, and she agreed that my daughter should take it. Together we came up with a set of accommodations. In retrospect, it was like putting together a birth plan. When you take childbirth classes they tell you over and over again to write down your birth plan. Do you want drugs? Write it down. Do you want low lights and soft music playing? Write it down. And so you write everything down and then you discover that childbirth has absolutely nothing to do with what you wrote down and, moreover, there is no one to give the birth plan to. The nurses are busy and whenever you see the doctor, she’s got her hands on your cervix.

And so Lindsay and I went along, happily documenting accommodations. We determined the correct font size for the large print test. We wrote down that Nora needed to be seated with her back to the windows, because glare and bright light affect her vision significantly. We said things should be high contrast. How about extra time? Well sure, that would help! Write it down! Extra time! Bathroom breaks! It was a wonderful world we lived in, where all children would be tested fairly.

When we were done writing down the accommodations, Lindsay added them to Nora’s Individualized Education Plan, or IEP, which is essentially a legal agreement between parents and the DOE regarding how children with special needs will be accommodated. A few weeks later, she received an email back. The gifted test wasn’t timed, and my daughter would be able to take as many breaks as she needed. Also, the testing accommodations needed to be removed from the IEP because four year olds don’t take tests.

“This four year old is going to take a test,” Lindsay emailed back.

But the answer was unequivocal: The accommodations had to come out.

About a month later the phone rang, and a young woman’s voice on the other end told me she was calling because I had requested a large print gifted test. She told me the test was about the size of a novelty greeting card.

“Can it fit on a desk?” I asked.

“No,” she said. I’d never seen a novelty greeting card, but that sounded potentially big.

“Is there anything else?” asked the woman.

I thought about the scrapped accommodations request, but the chirpy voice on the phone—some nameless person at the DOE, sitting in an office piled high with novelty greeting card-sized gifted tests—didn’t strike me as someone with the power to actually do anything.

“I guess that’s it,” I said. What I meant was: Wouldn’t it be wonderful if the only accommodation my daughter needs is large print? What I meant was: She has never taken a test before, so let’s go with large print. And maybe that will do it, maybe this visual impairment isn’t that big of a deal after all. Because when you’re raising an exceptional kid, it takes a long time to understand just how fully exceptional that kid is. Just how many exceptions are there? Wouldn’t it be a lovely present if there were only one?

In January, Nora and I walked down the block to our local school to take the test. I handed over my daughter’s passport as proof of her identity and the woman sitting at the desk found her name on a sheet of paper.

“She is supposed to get a large print test,” I said. I had already emailed twice to confirm that the test would be there, but my fuzzy dealings with the DOE didn’t inspire a lot of confidence.

She sighed and asked me if I had brought any confirmation that I’d requested a large-print gifted test. No, I hadn’t—no one had instructed me to.

“Is there a reason I would ask for a large print test for a child who doesn’t need one?” I asked.

The woman shrugged, shuffled a few papers and seemed to decide that we could have the test.

Ten minutes later my daughter’s name came echoing into the auditorium, and out of nowhere a second woman appeared, took Nora’s hand, and escorted her out of the room. It happened so fast that I didn’t have a chance to ask if I could look at the test to make sure the print was large enough. I sat in the auditorium, read the paper, and compulsively checked my watch.

After about thirty minutes, children began appearing at the entrance to the auditorium. They came into the room holding a teacher’s hand, looking so tiny and pleased with themselves for being in a big kid school.

Over the course of an hour, parents gathered up their belongings, stuffed children into winter coats, and left until I was the last parent sitting there. She’s slow to see, I thought, debating whether the fact that she was the absolute last child to finish the test was a good or a bad thing. She needs lots of breaks, I thought. Her eyes get tired. Finally she appeared, beaming.

“Did you have fun?” I asked.

She gave me her big girl nod, head moving slowly up and down as far as her neck would allow.

“Could you see everything?

She nodded again, but I wasn’t sure if she was telling the truth. She is only at the edge of understanding that other people can see things she can’t.

When we drive on the highway near our house, there is a point where we round the bend and suddenly the Empire State Building comes into view. There it is! my son used yell, back when he was younger and easily excited by tall buildings. After a while, Nora started to point the building out too. One day we rounded the bend and, at the place where someone usually pointed the building out, my daughter cried, I see the Empire State Building. But it was cloudy that day, and the building was shrouded in thick fog. She hadn’t ever seen the building, but she had memorized the exact spot where it would come into view. The rest of the family all saw something and marveled at it, and she wanted to marvel at it too.

When the test results came back in March, I felt sick as I clicked on the email. I had a feeling I knew what it would say. Meanwhile, my phone began vibrating off the table and onto the floor with text messages from other parents I knew whose kids had taken the test, because that is the world I live in, where all children are either delayed or gifted and sometimes both.

The test has two sections. I knew from looking at the practice test that one section had large, high-contrast pictures where the student’s job is to decipher a pattern or figure out which element is missing or different. The other section has small line drawings and the questions are spatial, things like which picture show a cat sitting in front of a chair and behind a duck. When you have low vision, contrast makes a big difference. Large, bold pictures are much easier to see than small line drawings. And my daughter’s score reflected this. On the section with the large, bold pictures she’d scored well above the 90th percentile. In the line drawing section she’d ranked in the 79th percentile. Her combined total placed her in the 89th percentile. She’d failed to qualify for the program. As I stared at the numbers in the score report I supposed it was possible that I’d miscalculated her abilities, but the huge difference in scores between the high contrast pictures and the line drawings seemed to tell a different story.

Uncertain of what to do, I emailed Nora’s ophthalmologist (when you’ve got a visually impaired kid you get pretty tight with your ophthalmologist). When we had first joined her practice, Dr. Pamela Gallin looked me in the eye and told me I would need to advocate for my daughter. “These kids do great,” she said, referring to my Nora’s condition. “They’re able to compensate and they’re smart. I have a kid who just got into Yale.”

But Dr. Gallin warned me that because the kids do so well without accommodations, it’s hard to convince people that with accommodations, they could do even better. I had experienced this a year earlier when I had mentioned during an IEP meeting that Nora was struggling to read.

“She’s not supposed to be reading yet,” the service coordinator told me. “She’s four.”

“I understand that,” I said. “But she wants to. She knows all her letters and is putting together sounds and she loves to pick up books she’s memorized and read them aloud. I think if she had a magnifier or something that would help her see better, she’d be reading.”

“It’s not age appropriate,” the service coordinator had said. Later, I found an organization that would sell me a $900 digital magnifier for $50. A few weeks later, my daughter was reading.

So I wrote to Dr. Gallin and explained that I thought the test didn’t adequately reflect my daughter’s abilities. I explained that there was a high contrast portion on which she had performed well and a low contrast portion on which she’d performed poorly.

Moments later, Dr. Gallin replied.

“This is ridiculous,” she wrote. “I want the test to be invalidated and re-administered orally.” She would reach out to her contacts within the visually impaired community and see what she could do.

Within an hour the head of a very large organization that services the visually impaired community responded to Dr. Gallin that he didn’t think my daughter’s test score had anything to do with being visually impaired. “20/150 is fairly good, usable vision,” he wrote. “It should not have been a significant impediment to her testing.”

I lowered my head to my desk and wondered if he was right. Was the large print test enough? Had I completely misunderstood my daughter’s abilities? My computer pinged with a new message. It was from Dr. Gallin.

“Try other avenues,” it said. “Scream loudly.”

By the end of the week I had contacted what felt like the entire tri-state area about the lack of accommodations on the test. I was in contact with Disability Rights Advocates (DRA), a disability rights legal center that was drafting a letter to the DOE. They were considering taking on the case if we needed to sue. I also emailed an executive director at the National Federation for the Blind and someone offered to put me in touch with a disability rights advocate at the State Department.

I ignored work that week; My sole responsibility was to track down the people who would help me get my daughter into a public school where she would be safe. Everyone sent back encouraging emails that said things like “Go get ‘em!” and “Thanks for your relentless pursuit of justice.” After spending a day hunting through web pages, I finally decided to email the New York City Schools Chancellor, the Office of Assessment, and  different branches of the DOE. I woke up in the middle of the night and thought about whom else I could email. Then I spent time building my case, like an Erin Brockovitch for the low-vision set.

Those with low vision have a long history of being discriminated against when it comes to standardized tests, in part because they make up such a small percentage of the population. The visually impaired who also have other disabilities aren’t spending a lot of time taking standardized tests. And because many people with low vision who don’t have other disabilities are able to compensate so well, their needs get overlooked.

In California in 2011, Stephanie Enyart, a legally blind law student, sued the National Conference of Bar Examiners for adequate accommodations to take the multistate bar exam. Over the course of three years Enyart applied to take the bar using the exact same accommodations she’d used throughout law school at UCLA—a screen reader and screen magnification software, both of which are common pieces of software that will one day take up residence in my own house—each time being denied, because the test “is not available in an electronic format.” When I read this, I couldn’t help but picture the bar typesetting the test on some kind of Guttenberg press.

Instead, the test administrators offered Enyart a range of different accommodations over the three years she applied to take the test. They offered to provide a human reader, an audio CD, a Braille version of the test and, wait for it … a large print test. Unfortunately, people with low vision don’t often read Braille; they instead rely on a combination of visual auditory cues. Enyart wanted to be able to magnify the test questions and hear them spoken aloud at the same time. She wanted to be able to go back and forth over text passages and questions if necessary. She wanted to be able to control the test in the same way a fully sighted person would.

Nora has already discovered this adaptation. She has an audio CD she loves called Mouse Tails, in which a father tells his mice children seven stories about mice. One day we were at a library book sale and she found a tattered copy of the book Mouse Tails in the dusty shelves. She clung to it as if it were a favorite stuffed animal.

Please please please can I have it?” She was bouncing up and down, ready to launch, as though the excitement of having found the book was enough to send her into orbit.

“Why do you want it?” I asked. “You already have the CD.”

“Because I want to read it too,” she said. I bought it. Later that day I found her in her room listening to the CD and flipping the pages of the book. The words in the book are large, but she wanted the comfort of having them read aloud too.

Eventually, Stephanie Enyart won. She passed the Bar and now works as a lawyer and disability and inclusion advisor at the Corporation for Federal and National Service. But even when testing organizations provide accommodations, they manage to convey that they’re not happy about it; that they think the test-taker hasn’t taken the “real” test. Up until 2002, College Board, the organization that creates the SAT, the GRE, and other standardizes tests, practiced “flagging,” meaning that test scores where people had received accommodations were sent with a special notation next to them, to indicate to anyone reviewing the scores (such as an admissions officer or potential employer) that the test taker hadn’t taken the test in the exact same way as everyone else.

Understandably, there is tension between providing accommodations and providing a standardized test. Once you change the standardized test in even the slightest way, it’s no longer standardized. That means that the percentile rank no longer makes sense, even though everyone continues to pretend it does. In order to accurately determine the percentile of a student who takes a test, let’s say, using a reader and magnification software, that test score needs to be normed against a population of test takers who all used readers and magnification software, or against test takers who all have low vision. But such a population doesn’t exist in meaningful numbers. So instead, the test is normed against the general population, and everyone involved just nods and agrees that this is fair and reasonable and that they all did the best they could with a sticky situation.

As a result people with disabilities frequently get brushed aside when it comes to testing. In New York City, of the kids with disabilities who took the New York State math test last year, only 8.8 percent passed. Someday this test will be yet another that we face in a long line of battles over accommodations.

A week and a half later, I got an email from someone labeled GTHelp, which I assumed stood for Gifted and Talented Help. They had looked into the matter, GTHelp said. They had spoken to the test administrator, who said that Nora had not indicated any discomfort while taking the test. If I’d had a problem with the administration of the test I should have responded within forty-eight hours of taking the test. Thank you, and have a nice day. It was signed, “Best, the G&T Team.”

The next day a lawyer from Disability Rights Advocates called. They wanted to take the case on, they really did, but they just didn’t feel it would have a big enough impact on the population as a whole. There were so many people who needed help. There were blind people in the Rockaways who had been handed written evacuation instructions during Hurricane Sandy. There were people in wheelchairs who couldn’t hail a taxi. Comparatively, my daughter possibly getting hit in the face with a kickball in the yard of what was otherwise a very nice school in an upscale section of Brooklyn…Well, you know, we’d live.

I took a walk around the block and then wrote back to GTHelp. I explained that without seeing the test I had no way of knowing whether the font and contrast was enough to enable my daughter to see it. I mentioned that I had now done a fair amount of research and everything I’d found led me to conclude that assessing a visually impaired child with a visual test didn’t make any sense. In the end, I asked if I could please just speak with a human being and see the test. I’m the mother. If I can just see the test I’ll know.

The next day the kindergarten placement letters arrived. Nora had not been admitted to the inclusive school with the small classrooms and the small yard. She had been placed at our local school, the one across the street, where she would be assigned a paraprofessional to accompany her in the lunchroom and at recess. This person would ensure her safety. And, most likely, make it hard for her to play with her friends once she reached an age where having an adult hanging around you at recess is no longer cool.

And then a few days later, amazingly, shockingly, a person at the DOE with an actual name (Shira Kessar) responded to my email. Shira suggested we speak on the phone. She was, it turned out, the person who had called me a few months ago to confirm my large print test request.

I explained why I felt the test was unfair, and why my daughter had not been properly accommodated. I fought to control my voice, which wobbled between tears and fury. Shira had a different point of view, and also sounded annoyed, as though I was accusing her of not doing her job, which, over the course of the conversation, I came to see was exactly what I was accusing her of. I now had a file filled with notes on gifted testing for visually impaired children. It said things like, Did they enlarge the OLSAT in color? and Could give the Patchowski questionnaire and Should not be in Braille and Should not have a tactile element. I pulled the file up and tried to formulate a coherent argument despite the blood pounding through my brain.

At some point in the conversation, I felt something huge and seemingly immobile give way, as though I had been sitting on a large tree branch that suddenly shifted down a few inches. And then, Shira said this: “Why don’t you put together a panel of people who can make a recommendation, and we’ll retest Nora over the summer.”

I had been prepared for a fight, ready to lawyer up and spend years researching papers on the testing of visually impaired, gifted kids and testifying and meeting all the other people out there who had been discriminated against. But instead, here was a completely rational and humane response. Nora would sit for another test.

One day in June, a few weeks before Nora was scheduled to retake the test, my phone rang. Caller ID said it was the DOE, so I rushed to pick it up. It was Shira. She was calling to update me on where we were with the test administration, and then she said she wanted to thank me. The DOE would be examining how they accommodated visually impaired children on tests. They would be working more closely with the division of the DOE that our vision teacher, Lindsay, came from. This would impact a lot of children.

I wanted to ask: What about all the kids who came before us? Why had this never come up before, in decades of testing? Where were all the other parents like me? Probably unable to drop work for an entire week to fight a battle for their kid. Or without advocates who told them to scream louder. Or without the resources to talk to lawyers and councilmen and the National Federation for the Blind. How many more people were out there, and how many more battles would I, personally, be having on this very issue over the course of my life?

About a week later, the inclusive school in our district called to offer Nora admission. I dropped everything, grabbed Nora from preschool and raced over to enroll her. The school gave no explanation as to why we were being offered admission, or even how they had gotten our phone number, and I didn’t ask for fear of jeopardizing our slot at the school. Later I met with one of the kindergarten teachers, who asked me about accommodations. Even with everything I had just been through, my first impulse was to tell her that my daughter didn’t need much in the way of accommodations. She’d be fine. She’s just like everyone else. I shook my head. She’ll need to sit at the front of the class, I said. And she’ll need a special kind of extra dark lined paper when she writes her letters.

The teacher laughed. “We don’t do too much writing,” she said.

I thought about my son, who was writing in full sentences at the end of kindergarten in the gifted program. I’d been told this school’s curriculum was equivalent to the standard New York City curriculum, but the teacher made it sound like things moved much more slowly. I wanted my daughter to be safe, but I also didn’t want her to be bored. I wanted both of her exceptions served. Was that too much to ask?

The test was scheduled for a day in July that coincided with a family vacation in Vermont, so Nora and I flew back to New York for the test. I ordered up cartons of Chinese food that night, trying to drown my anxiety in noodle soup and steamed pork dumplings. The next morning we sat in our neighborhood bagel store and ate poppy seed bagels piled with egg and cheese, having been deprived of their chewy, gluten-y goodness for a whole two weeks. I made dumb jokes. I took a picture of Nora eating her bagel and texted it to my husband. Keep it light, I thought. Keep it light.

We came out of the subway in Manhattan to a perfect sunny day, and on the way to the test site we passed children playing in sprinklers in the park. Nora watched the kids solemnly. “I can’t play in the sprinklers, right?” she asked. She knew the answer, but just wanted to double check, just in case there was time for a quick romp through water en route to a test that had required months of meetings and conference calls.

Once inside the dim school building I walked over to the reception desk and gave my daughter’s name.

“Mama,” Nora tugged at my sleeve. “My heart is beating so fast. Why is it beating like that?” She put her hand over her chest and smiled at this new sensation, as though nervousness was a wonderful new feeling.

I hadn’t told her what the test was for, and she never asked. Five year olds just accept things—I have to brush my teeth each day, I have to drink my milk, I have to get shots, I have to take a test. But even so, she knew that none of today was normal. She knew it was important. “Just do your best,” I said. I promised her ice cream afterwards. But, no fool, my daughter abruptly started to cry. I hurried her over to a folding chair in the school hallway and gave her a hug.

“Are you anxious?” I asked.

“What does anxious mean?”

“Do you feel kind of scared that the test won’t go well?”

She nodded.  A tear fell down beneath her glasses and rested on top of her cheek.

“Kiddo,” I sighed. “You’re going to do great. It’ll be fun, right? And then we’ll do something really fun afterwards.” I held her hand and we slowly climbed the stairs up to the school library where the test would be administered.

It is standard for teachers of the visually impaired (TVI) to serve as test administrators for visually impaired students; This had somehow been news to the DOE. TVIs are in short supply in New York City, in part because there are so few visually impaired students and in part because when people choose to go into special education, they gravitate toward the more well known disabilities. So the job of administering the test would fall to the TVI we knew best—Lindsay. She greeted us and smiled nervously as we came in

A few unidentified people, who I assumed by their lack of introduction were DOE staff, sat uncomfortably in little kid-sized chairs. I wasn’t sure what they were doing there—perhaps observing the test to ensure it was administered correctly, maybe making sure no one cheated, or perhaps as a legal precaution. They didn’t want me coming back to them again and complaining that the test had been unfair.

The panel I’d put together, consisting of Dr. Gallin, Lindsay, and Dr. Anne Corn, an expert in the gifted testing of visually impaired children, had all participated in what was described to me as an initially contentious conference call that ended with a lot of self-satisfaction. The DOE, it seemed, had been somehow unaware that large print tests are not a blanket solution for the visually impaired. The panel had patiently and firmly explained that this was so and slowly, over the course of a single phone meeting, the DOE had agreed.

They had decided to administer the test using twelve iPads, each one zoomed in to display a single pictorial response. Nora would walk around the table and look at the iPads. She would be able to carry the stimulus picture along with her in order to compare pictures. Because of the length of time required to set up the iPads, and also because my daughter is slow to see, the test would take nearly three times as long as the regular test. She would therefore take the first part of the test, have a break for lunch, and, an hour later, return for the second part of the test. It would be a sort of trial run, this type of test.

I hadn’t been in on the phone call, for reasons that were never entirely clear to me other than the fact that I was not a doctor or an expert and was not invited. Instead, the panel members each reported back to me how the meeting had gone and what had been decided. It wasn’t a perfect solution, they all said, but it was a start. Nora would attempt the test this way, then we’d read the results and wait and see.

I eyed the bank of windows on one side of the room.

“Do you think the room is dark enough?” I asked Lindsay.

“I think it’s fine,” she said.

I wondered what else I should be checking. What else would I discover later, things I should have been thinking about, noting, or objecting to?

“Okay,” I said. I kissed Nora on the top of her head, then bent down to press her against my body. I could feel the tension in her little arms. “Have fun,” I whispered, and I thought: No five year old should ever be this stressed out.

As I waited in the school hallway, I watched two sets of exceptional children come through the doors. The first were other children who were taking the gifted test. They came in accompanied by one or sometimes two parents. They were well dressed and chipper and nervous, with hair brushed neatly. The kids sat patiently and waited for their names to be called. The parents occasionally handed them snacks. Then they disappeared down the hallway, emerging sometimes only twenty minutes later, the test complete. How easy it was for them, no boxes to check or hostile phone calls to make. They showed up, took a test, and went on with their day.

The second set of children often came in to the building via wheelchair, or sometimes they walked in, holding the hand of an adult teacher or aide. These children shrieked or let out rhythmic chirps. Not one of them formed a sentence. They were older than the gifted test kids, perhaps nine or ten, and many of them seemed not to know where they were. Whereas the gifted test kids blended in with the rest of the population, these kids could not hide their exceptionality. How lucky I am, I thought, that all I have to complain about is improper accommodations on the gifted test.

When the test was done, Lindsay came over to talk to me.

“She did well,” she said.  “And I saw the large print test.”

“You did?”

“I don’t know if I was supposed to see it or not. They happened to have it and I saw it.”

“And…?” I held my breath. The large print test had become like the Abominable Snowman. If only I could see it I knew all would be explained, but no one would show it to me.

“And it’s way too small,” said Lindsay.

I felt my eyes suddenly fill with hot tears. I fumbled in my bag for a tissue, but too late. My cheeks were wet. My nose started to run.

“So I was right,” I said. “She couldn’t see it.”

“She couldn’t see it,” said Lindsay. “I let the DOE know.”

Lindsay was right: The iPad version of the test had gone well. Nora easily placed into the gifted program, scoring in the 95th percentile. What was surprising was that she had not only performed better on the part of the test that was low contrast, but she had also done markedly better on the high contrast portion, which seemed to indicate that viewing the tests on an iPad made a big difference for her. Even more surprising, she aced the part of the test that dealt with spatial reasoning. This is the section that requires students to manipulate objects in their mind, in order to understand which piece is missing, or how two things would look when combined. Somehow, the child who could not physically see how to put the corner piece of the puzzle into the right spot had figured out a way to do just that.

And this is where the story should end. Visually impaired child not accommodated, gets accommodations, turns out to have gifts and talents after all, gets to go to PS 32, the nice, safe school where she won’t get a kickball to the face and also won’t be bored in a program that is slower than the regular curriculum.

But this is New York City, where nothing is simple. Due to overcrowding, PS 32 decided to cut its gifted program down to one classroom for the year. The seats went to kids scoring 98th percentile or above, or kids who had sibling priority. The program was full. There was a waiting list, but if any seats opened up they would go first to kids who had scored a ninety-eight.

And now, we had suddenly become just like everyone else. New York City is full of kids who place into the gifted program who don’t get a seat. It’s an unwritten rule of city life that one accepts this and moves on. But in our case, it somehow felt especially unfair, in part because other kids who wanted seats in the program weren’t being placed in physical harm at their local school, and in part because the percentage Nora had scored on the test was only meant to be an approximation.

Because the test had not been normed against other visually impaired kids who had taken the test in the same manner, the percentile was meaningless. We hadn’t known, of course, that admission would come down to a few percentage points, but now that it had, the test my daughter had taken was insufficient.

And what about the part of the test where she had to manipulate images in her mind? It’s so hard for kids with visual impairments to do this, I wanted to yell at someone. Do you understand how exceptional she has to be to be able to get those questions right?

I called Shira and explained the situation, and she set up a conference call so I could speak with the people who are responsible for deciding which kids get slots in which gifted programs. In New York City this is like being offered a conference call with God.

Everyone else was already on the conference line when I joined. They introduced themselves, and Shira asked me if I wanted to start by explaining what she referred to as “my questions.”

I paused for a moment, because what I really wanted to say was this: I just want elementary school to not be a miserable experience for my daughter. I don’t want it to begin by having people underestimate her abilities just because she is bad at seeing. Could we just give her elementary school? We all know middle school will be horrible. Is there anyone it isn’t horrible for? And high school will be a challenge for her too, with all the reading and the small print and not wanting to be the weird kid using a magnifier or an iPad or whatever device is on the market nine years from now. But elementary school, can’t we just make that nice?  You do things with paste and glitter. You put on plays where you get to be a sunflower. Let’s make it nice for her. Let’s give her a school where she isn’t going to get a kickball in the face. Let’s give her a school where she isn’t falling off her chair with boredom while the other kids all learn to write the letter “G.” Please, can you just do this one thing for me? Please?

Instead I let the others on the call talk. They respectfully disagreed with my opinion (and the opinion of the American Printing House for the Blind, the Texas School for the Blind, and many other experts) on percentile. The test would never be normed against other visually impaired kids. This was the best anyone could do, and the DOE felt very comfortable with the accommodations my daughter had received.

The result was valid.

In late August, the emails started arriving from other parents with children starting kindergarten at the inclusive school. There are only three kindergarten classes, so we will live with these parents and these kids for the next six years. Everyone’s emails had that air of hesitation about them that accompanies a group of people just getting to know one another. A group get-together got scheduled, then rescheduled, and then suddenly there were two group get-togethers and a potluck because everyone was trying extra hard to make sure everyone got included.

It’s going to be a good school, I told myself. It’s not going to be the world’s most fascinating experience for her, perhaps. She might not be intellectually challenged every minute of the day, but at least she’ll be safe.

And for the most part, this has borne out. Nora comes home and reports that she hates math, but when I probe deeper it turns out she means she’s bored. Her class is still learning what a triangle is, and she wants to learn multiplication. Like many bright kids, she suffers from teachers who find her precociousness annoying.

“I told Miss J. that I’m a great reader,” she tells me one day. “And Miss J said, ‘We are all great readers.’ But we’re not all great readers. Why did she say that?”

I explain about bragging and being humble and how Miss J. couldn’t single her out as the greatest reader in the class in front of an entire classroom of kindergarteners. But I also silently seethe, because I know Nora is just seeking validation. She knows she’s ahead of the other kids; She just wants someone, anyone, to acknowledge it so she can go on with her day.

But on the other hand, I also see the safety of the small school. Even with the small yard and the high student-to-teacher ratio, Nora has been knocked down in the playground, she’s been sidelined by an errant basketball, and she’s run smack into another kid who, to her eyes, came out of nowhere. Surely the rate of these incidents would have been exponentially higher in a school of 900 children.

We continue to waver between being exceptional and being just like everyone else. Nora took the test in an exceptional manner, but her results were interpreted just like everyone else’s. She scored exceptionally but was still denied a seat. Legally, the city must accommodate one of her exceptions but not the other.

Every day with my daughter is a balance between exceptionality and normalcy. She walks down the street just like everyone else, right up until the moment when she doesn’t see the in the pavement and she is suddenly splayed out on the ground, when she mistakes a dark spot on the pavement for a large crevasse and comes to a screeching halt. She takes a test just like everyone else, except that her one exception doesn’t let the other exception shine through. Being twice exceptional means we go through our day much as the rest of the world does, right up until the moment when suddenly everything is different.

 

This story was originally published at The Big Roundtable.