Our 504 Journey: Lessons Learned and Looking Ahead 

As summer moves on, planning for the upcoming school year begins. There are supplies to purchase, schedules to map out, and what seems like a million other details. And for parents of children who have additional needs with IEPs or 504 plans, there are even more back-to-school details to iron out. 

Our daughter was only months old when we learned that she had optic nerve hypoplasia. She has a smaller than normal optic nerve, it can present in a wide variety of ways ranging from severely debilitating, impacting development and vision— to mildly inconvenient, dampening one’s eyesight just a bit.

While we’re fortunate to have landed on the much more minor and stable side of the diagnosis, with no signs of developmental delays, her vision is far from perfect. And, now that she’s well into her elementary school years, we’ve had to learn what tools are available and necessary to ensure she can learn and succeed.

Enter 504 plans, low vision clinics and PAPERWORK. MOUNTAINS of PAPERWORK. And a back-to-school process that is finally, MAYBE, starting to feel a little less foreign and overwhelming to my husband and me.  

The Early Days

Originally classed as “low vision” (which means you’re one step above being legally blind and have a visual acuity between 20/70 and 20/400) and told she likely wouldn’t be able to drive, our daughter entered school with parents who were VERY uncertain about how well she could see what was happening in the classroom and even MORE uncertain about how to do anything about getting her the help she might need. (I should add that glasses and contacts do NO good in these situations, so correcting the issue that way wasn’t an option).

A well-meaning (and clueless) first-timer, I added notes to every registration form where possible and sent detailed emails to the school nurse, her teachers and the school administration to be sure EVERYONE understood our situation. “Please allow her to sit close, let her hold materials when necessary, etc.”

That seemed sufficient enough, at least for kindergarten and first grade, but then near the end of that second full year of school, her ophthalmologist started mentioning the need to have her assessed at a “low-vision clinic” and that those results would be critical for her school accommodations.

Her what?! You mean everything I’ve shared so far isn’t sufficient to ensure she’s getting what she needs?! I felt like a failure for missing something that seemed so huge. Something she may have needed before now.

Completely flustered but trusting our care team I made the appointment, we went to the visit and we had one of the most educational experiences of our lives! I learned more about her condition than I’d ever known, how she sees the world VS what’s typical for others her age and what’s better, we were able to interact with and use the gadgets and technologies that could be made available to her.

COULD BE – I was so confused, and I guess just completely naive. Why weren’t these automatically provided, given her diagnosis?

Oh, because you have to take your diagnosis, formally share it with the school and district via state eye reports and then begin the “process.”

Our first ARD

It felt like there were so many steps, so many discussions, so many emails. But it was all to help build the file on our girl that would be used for our ARD discussion (which stands for Admission, Review and Dismissal and is basically a time for all parties including parents, district-level representatives, school administrators and grade level teachers to convene over the needs of the child and agree upon a path forward).  Our ARD ended with a determination that no accommodations were needed. She did not meet the criteria to be covered by section 504 of the Rehabilitation Act of 1973.  

Well, that felt straight-forward enough. After the hoops we’d jumped through to get here, and the various doctors’ reports, it felt simultaneously odd and like a relief, but given our girl’s ever-improving vision, I trusted she was getting what she needs. I mean, her grades certainly weren’t showing otherwise, and teachers brought up no concerns.

I thought we were in the free and clear….or at least as much as we could be given the currently incurable condition our sweet love faced.

Then we had our annual ophthalmology appointment. He mentioned that while no accommodations were deemed necessary in second grade, it would be a process that would need to be completed every two years or so, as changing curriculum and classroom materials might pose issues down the road. It was just better to be safe then sorry.

Looking Ahead

That’s when it really sunk in – after more than seven years of appointments with specialists, tests and screenings, I realized, this is just a part of our routine…even if it was anything but. Just as there is no finite, definitive cure for this disease, there is also no finite, definitive path forward.

It’s all unfolding and evolving along with us, and I feel a bit foolish to have expected anything else.

So for now, as we approach a new school year and our second low-vision assessment, I’m controlling what I can. The supplies are ordered, the first-day outfits are being pieced together, messages to teachers are drafted and the previous reports and documentation are at-the-ready.