Lucky Me

vision-sunshine

This summer, my younger daughter — already the survivor of a lifetime of medical drama — was diagnosed with three distinct visual disorders. Her eyes don’t focus at the same speed, they strain easily once they’ve achieved focus, and each eye moves at a different speed when traveling across the page. Discovering these issues was yet another example of my internal voice — whispering constantly that something was not quite right — being the most truthful voice in the room. Still, despite my relief at having an answer to my daughter’s struggles with reading, something else has been nagging at me as the school year begins.

As background, it’s important to note that my life left its intended course the moment that this daughter, Sammi, my youngest, was born. Her immediately obvious state of vaguely-unwell dragged me away from my job and into the flexible world of freelance work nearly thirteen years ago. I’ve been home to walk her and her sister to school, to stay on top of doctors’ appointments, to supervise homework, to read aloud, to take her for annual vision screenings, to sit by her side in the operating room before she had sixteen different surgeries. I knew the names of her teachers, her friends, her longtime bully. I knew her daily life because I was home.

And I was home, not because I chose it, but because I am incredibly, incredibly lucky.

My husband makes enough money to cover what my freelance work has never covered. Our health insurance — which was affordable since it came through my husband’s work — made it possible for us to see doctors, dentists, and a dizzying array of specialists. It covered a lot, and our family income covered what was left. We never made a single decision about healthcare based on money. Not one. It’s incredible and becoming rarer and rarer.

Because I was lucky enough to be home, I watched her read nearly every single day, her finger touching the words in first grade, second grade, third grade. When her fourth grade teacher made her stop using her finger — “you’re too big for that! fourth graders use their EYES!” — I watched her read aloud, halting and broken into words, under her breath, at the kitchen counter. I mentioned it at conferences, and was told she needed to read more. More books, more hours, more reading. I asked again in fifth grade and was told the same thing. Every summer, I sent her to read for twenty and then thirty minutes per day, and she set the timer on her watch and would stop in mid-sentence if it went off, the bare minimum, shrugging when I asked if the book she’d chosen was any good.

We tried graphic novels. We tried poetry. We tried magazines. Nothing was interesting, nothing was worth one millisecond more than the timer imposed.

We read together, taking turns, paragraph by paragraph, then page by page, then two pages at a time. Listening to her read aloud at 9, 10, 11, and 12 was exhausting. Halting. One. Word. At. A. Time. Sometimes. Reading. The. Same. Word. Word. Twice.

I took her for another vision screening, and another one. Conversations with her revealed a bright girl with a big vocabulary, deep thoughts, and insightful ideas about the world. Papers she wrote showed none of that.

White, well-educated, and privileged by all the gifts I didn’t earn, I confidently pressed the school for more reading tests in sixth grade. “Something is not right,” a reading specialist told me, “but we can’t isolate it in any of the tests we did. I wish we could.”

We hired a reading tutor, a smart and thoughtful woman recommended to us by a friend who, herself, is a teacher with multiple Masters degrees. The tutor tried strategies, picked books to read together, conducted interested conversations and gave Sammi work to do outside of their meetings. At the end of seventh grade, she suggested that Sammi see an optometrist with a specialty in vision disorders.

The doctor’s office is an hour’s drive from where we live. I drove us there in our reliable car — a car we own because our finances are stable, which comes in part from every generation before us that grew more and more stable through the kind of privilege that rewards hard work instead of merely pouring more work on top of it. Our reliable car got us there on time because my husband’s income is high enough to allow me the time away from my work to drive us there and back.

She’ll need to go to vision therapy weekly. This cycle — drive an hour to the office, wait an hour for vision therapy to occur, drive an hour home — will continue weekly thanks to our health insurance, our reliable car, and my flexible job.

At school, she’ll have a 504 plan, a legal set of guidelines for the accommodations her doctor wants her teachers to make for her until she’s re-trained her eyes. She has this plan because I had the time, energy, and wherewithal to email the school in early August, mid-August, and late August and nag them until they set up a meeting. She has this plan because I am healthy and confident after years of being taken seriously by schools, and I showed up this morning and had time to wait for twenty minutes for the meeting to start (late), and I knew how to talk to educators, and I knew my daughter’s rights — and English is my first language.

So, I’m sorry this happened to my daughter — that she has to fight her own body, again — but I’m not sorry that it’s happening to me. I’m lucky that, when the universe was passing out kids who needed able advocates, they passed one of those kids out to someone who had everything she needed to be successful in that job. I earned none of this: not my skin color, not my access to education, not my husband’s job, not my institutional privilege.

What I’ve been able to do for Sammi is not always possible for other parents. I wish it was. As the school year starts, I hope schools can take into consideration all the things I needed to help my daughter — time, energy, confidence, money, stability, language — and remember that those things are not all available to all parents. The students whose guardians can’t do all the things I’ve done still want their children’s needs met. I hope it happens. Every kid deserves the same chance that Sammi does.

 


This has been a Finish the Sentence Friday post, hosted by Kristi Campbell of Finding Ninee and Kenya Johnson of Sporadically Yours. This week’s prompt is “It’s back to school time and…”

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8 thoughts on “Lucky Me

  1. Thank you. For spelling out all that it takes. For making privilege visible. Your work here, in writing, is vital to all the children who didn’t get passed out to moms like you, and to all moms, with our array of privileges or lack of them.

  2. I love the sentence you wrote about when the universe was passing out kids who needed able advocates. She’s a blessing and so are you. I hate that the way our healthcare system is set up that people have to forgo treatment because they don’t have the means.

  3. Beautifully written. Your post gives voice to feelings I had when navigating the schools when my children were young. Some children do fall through the cracks, but if the adults in their life had [time, means, language, transportation,. . .] things might be different.

  4. You said this perfectly as a mom plain and simple. As I am with you that I am my kids’ advocate in school and life always, especially when they are young and need a stronger and louder voice to be heard for them. Thanks quite simply for that reminder here today.

  5. beautiful. And was it all because of that tutor’s suggestion? For seeing where the problem might lie?
    Gorgeous about the universe handing you two to each other.

  6. What a wonderful post! To be able to see all the blessings that you and your daughter have received because of your circumstances and to think of the many who may struggle and not have that same kind of means and support shows that you have a very compassionate and empathetic heart. It is so important that one never takes for granted the blessings one receives.

    This was very helpful to me too. I didn’t realize that there was a condition called called saccadic eye movements.

  7. I needed this reminder tonight as we’re in the process of having to re-advocate (maybe — they’re re-evaluating my son at school for services because new state even though his IEP was done in May) for my kid and I’m a little annoyed by it honestly. However, your post reminds me that I quit my job when he was born, knew something was wrong earlier because of that, and then, even when he was in preschool autism class at three, I only went back to work part-time to do speech, etc. I did not earn the right to any of that, nor to my husband’s great health insurance. It’s an important message for sure. Thanks for the reminder!

  8. I quit my career as a nurse to give everything I had to get Eliza in to the right therapies, the right school etc. It’s a constant fight for services in UK at the moment so still fighting. Loved reading this piece, thanks for sharing. You are an awesome parent!

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