My 8-year-old slumps in front of his laptop. His teacher begins the lesson, and he begins building a Lego structure. I stand behind him, alert, paying attention to his teacher, in order to keep him on task.
At his last teacher/parent conference, we all agreed he pays attention better when he has an object in his hands. This was when students were in-person. It's yet to be formally determined if it works during virtual school. We've been in virtual school since November and I'm exhausted.
My son has been labeled neurodivergent, but we are still seeking out formal assessments to see if he meets the criteria for an official diagnosis. In the meantime, his current school has expanded his IEP services to help him at school.
But it's my responsibility to implement most of these services.
Like parents everywhere, my husband and I have taken on a more direct role in our kid's education. Like parents everywhere, we are just getting by. For my husband and I, there's another obstacle we have to try to bust through; we are blind. This means we can't always access material in the same way. And we hope that online material is accessible.
But here we are. I have organized worksheets and textbooks on a table, placing Braille labels on as much as possible. His teacher directs the students to find a specific page in their math workbook. My son continues to sit. My hand grazes along labels until I find the math book. I raise my voice, asking him to help. He acts like he's coming out of a trance. He grabs the book while I rifle around the pencil box, looking for a sharpened pencil. Turning around, I hand it to him. I snap at him, demanding he take it when he continues to sit there. Then, I discover his math book still closed. I feel a buzz in my head, take a deep breath, and ask him to find the correct page.
I'm lost during his math lessons. This is not the math we learned 30-some odd years ago. I repeat his teacher's questions, hoping my son follows along. Rarely do I hear his pencil scratch across the paper.
Writing is his least favorite subject. He says he hates writing. Knowing he's more engaged when discussing his interest, I work with him to write about his favorite subjects during writing. Usually it involves building ships, specifically the Titanic. We discuss what the beginning, middle, and end should be. We are lucky if we do more than three sentences. I leave him to write.
There's a distinct sound a pencil or pen makes when writing. It's different than the sound it makes when drawing. I hear his pencil scratch in broad, circling arcs and frantic scribbles. I ask if he's writing, and he says yes. I ask him to read what he's writing. It's clear from his stumbling, hesitant words that he's making it up. When I ask him to repeat, it's not the same.
I hang my head and send his teacher an email.
Finally, it's small group break-outs, which means they spend time on a variety of educational apps. He usually enjoys this part of the day. The school has supplied students with Chromebooks. Technically, Chromebooks have an accessibility feature for blind and low vision users. It's a built-in screen reader called Vox. Neither my husband or I are familiar with Chromebooks and Vox. We prefer Apple products and its screen reader VoiceOver or JAWS on our laptops.
The problem with screen readers is that if an app or website is incompatible, we can't help our kids navigate it. It also does not allow our kids to access parts of the app/site that are inaccessible. So, for school, we don't turn on Vox on his Chromebook.
He's 8, behind in reading, and not experienced with tablets and computers. When he inevitably runs into a problem, I do my best to help him. I have to physically scroll for him, sliding my finger up the screen, asking him to read what he can. If I know what a visual element should be, I ask if he sees it. If he knows how to access an app but has technical difficulties, there's only so much I can do without being able to access it myself. We both end up frustrated, pacing in our respective corners, taking deep breaths.
Millions of people in the United States are blind and low vision, and this number is projected to increase by 25 percent each decade, according to the National Institutes of Health. Contrary to popular belief, more often than not, it's not our actual disabilities creating obstacles, but it's the lack of equal access. If accessibility were built into devices and digital platforms, there would be no issue.
As a disabled student, my son is rightfully provided with services allowing him an educational experience that works better for him. But as a disabled parent, my access needs are not considered, and in most cases, the school is not required to accommodate me. My blindness is not the problem, but the lack of equal access is. This is an ongoing problem, but in 2021, with virtual school our reality, it's a barrier keeping me from adequately assisting my kids with school.
I've been on my feet for six hours straight. The school day is finally over. For the first time today, my son smiles, excitement bouncing off him. He slams his tablet shut and streaks up to his bedroom. I hear Legos crash together as he sifts through a pile. I'm ready to tumble into bed.
He is now relaxed, building a ship, finally focused on what he wants. Today's expectations lifted and set aside. My tension remains though. When I became blind in my 20s, I didn't expect my barriers to come from society's inability to consider my needs. Seventeen years later, and I'm still confounded by the lack of accessibility that's my actual obstacle. I tidy up, trying to unwind. I need downtime before we combat these issues again.
Tomorrow, we will repeat the cycle again.
Tomorrow, I will continue to push for accessibility and opportunity.
My son leaps down the stairs shouting my name. His words spill out as he describes the ship he has built. I sweep his mop of hair off his forehead before skimming my hands across a two-foot ship-like structure. His words continue to tumble out. Air whips past me as he races back upstairs.
My hope for the future is that neither of us will be deemed different just because we access the world at times in different ways. I want both of us to know accommodations will readily be available. I do not want us to bristle before every encounter, armed and prepared to demand these accommodations. I want us to live in a world where being disabled is simply one of many ways of being human.
