I had always planned on being a laid back parent. My son, born with perfect vision, had been a breeze. And then my daughter entered school. Even though she had albinism and nystagmus, I assumed I’d continue being easy breezy. I would explain the accommodations she needed, the teachers would listen, and we would all go merrily on our way.
While somewhere in the back of my mind I probably knew that this was an unlikely scenario, I still wanted it to be true. No one could tell me for certain what kind of accommodations she’d need because no one knew exactly what her capabilities were. Maybe her vision wouldn’t be that bad. Or maybe it would be terrible. But I was pulling for “not that bad” and if “not that bad” turned out to be the case, then maybe we could squeak by with only minimal accommodations. And maybe I could continue being the laid back parent I wanted to be.
Preschool went well. She sat in front on the rug. Her teachers let her come up and look closely at books being read to the class. See – not that bad, this whole visual impairment thing. And then my daughter’s vision teacher suggested she take a test to see if she could qualify for the gifted program in New York City, where we live. My son was in the program already and loved it. It made sense that my daughter would qualify for the program too. I checked off a box on a form requesting a large print test, and thought, maybe that’s all she needs. Maybe we go through life checking off boxes for large print tests, and everything else just goes according to plan. But when the results came back, it was obvious that large print tests were not going to be enough.
When I called the department of education to say I thought perhaps she hadn’t been able to see the large print test, they dismissed me. Not everyone qualifies for the program, they said. Clearly I was just another pushy mother who felt her child’s genius hadn’t been properly evaluated. It’s possible that if I’d been listened to the first time I might have continued being the laid back parent of my dreams, or maybe this was the inevitable shaking I needed – someone grabbing me by the shoulders and saying: if you don’t stand up and yell for your daughter, no one else will do it.
So I stood up and yelled. And many months and meetings later, the department agreed to give my daughter the test in a digital format where she could control the size and the contrast. Lo and behold: she tested into the program. But it’s hard to be the screaming mother all the time. And by the time my daughter started Kindergarten I thought: I got this. I got the largest department of education in the country to change the way they test visually impaired children, after all. Surely I can navigate Kindergarten.
I met with my daughter’s teachers before school started to walk them through the technology she’d be using. The rules, which were new to me then but I can now recite in my sleep: she sits in the front of the class, she uses an iPad, please remember to charge her CCTV. And then one day my daughter came home and said she hadn’t been able to see her math test. So I emailed her teachers.
“But she didn’t say she couldn’t see the test,” they wrote back. “And also, she got all the questions right.”
I picked up the phone and called the teachers, and said the words that I now know I will be repeating often and for the rest of my life: just because she did well doesn’t mean that with the correct accommodations she can’t do better. I wish the cadence were better, that there was a short poem I could write or a snappy six word phrase that could convey the same information, but if there is I haven’t found it. Nonetheless, this has become my mantra.
Last month my daughter started first grade. At the meeting before school with her teachers I shared the story of the math test and the gifted test. We also discovered together that her reading level had been assessed incorrectly.
“We are navigating this together,” I said to the teachers. “If we’re not partners then it’s not going to work, and I’m going to be calling you up saying she couldn’t see something.”
I don’t know if I came across as an overlycrazed helicopter parent or not, but I don’t care. This is the kind of parent I am now. The next week, when my daughter came home from school with a book at her correct reading level, accompanied by a CCTV and a note from her teachers asking if I might be able to download the book to her iPad, I knew that this is how it will be from here on out. I can luxuriate in being laid back with my son, but when it comes to my daughter, I’m the parent I never thought I’d be. And I’m okay with that.
