Parents of school-age special needs kids know what this title means and likely have a visceral reaction to the three little letters. An IEP is an individualized educational program, a/k/a the legal document that guides a school district’s provision of special education services.

Grace’s IEP meeting is tomorrow for this new school year. For the past few weeks, she’s been doing testing and evaluations, much to her dismay. Today, the draft IEP and testing report came in. I’ve got to say, they did a pretty good job. Grace’s strengths and limitations were accurately measured and reported by the IEP team.

I’ve been telling the SPED coordinator that Grace is incredibly smart, but she is having extreme challenges accessing the curriculum. She can’t see the work she’s supposed to do, so she becomes frustrated and shuts down, refusing to do any more work. By the end of the school day, she’s absolutely fried, and the grades in her two late-day academic classes absolutely reflect that. She’s missing a lot of assignments for her later classes, and although all of her teachers say she’s delightful and contributes well, her grades are dismal.

Despite all of the roadblocks we encountered trying to get to this IEP meeting, I’m heartened that the school has an accurate view of Grace. However, it can be a bit depressing to see all of those diagnoses and test results in writing. It’s not inaccurate, but it’s hard to see in writing that she has significant limitations due to her disabilities.

The other side of this coin, though, is hope—hope that we might be able to figure out solutions, hope that she will be able to get through this, too. But IS there a solution? Is there a way we can get her to access the curriculum? Everyone agrees that she belongs in a regular education environment and the IEP is the legal document that guarantees she’ll spend as much time there as possible. But how can we make it so she can do her work when so often she can’t see it?

Reading through the IEP tonight, I couldn’t help but wonder at this life we’re living. This life of specialists and therapists, this life of hospital stays and life-saving interventions, this life of limitations and challenges. What a crazy thing that we have a team of doctors who know Grace from years of visits and emergency procedures. What a crazy thing that we don’t have time for homework after school because we have a different therapist appointment every day. What a crazy thing that this incredibly smart kid can fail, simply because school isn’t designed for the blind. What a crazy, crazy life we lead.

Most parents of special needs kids will tell you how devastating it is to think those kinds of thoughts. Looking at where your child is compared to where other children are can be absolutely soul-crushing. So you learn to measure differently. What does it matter if my child meets the gross motor milestones, after all, when she can make any therapist fall in love with her within minutes? Why should I worry about reading comprehension scores when this kid could have died so many times? It’s all about perspective.

We have often sacrificed academic success, knowing that keeping Grace alive was the number one priority. There will be time to learn to read AFTER the infection is cured. Even though that put her behind her peers, it was the only choice to make.

Now, she’s healthier than she’s ever been, thanks to COVID-related isolation. So now, it’s time to learn the academic stuff.

Here’s hoping her new IEP will put her on track for success.