When Advocacy Becomes a Full-Time Job

There is a part of parenting a child with a disability that I don’t think people always understand.

It isn’t just the appointments.

It isn’t just the paperwork.

It isn’t just the ARD meetings.

It isn’t just making sure she has what she needs physically.

It is the constant advocacy.

We fight so hard for our daughter.

We sit in ARD meetings and explain her needs. We talk about what she can and cannot physically do. We discuss accommodations. We answer questions. We make sure everything is documented. We leave those meetings believing that the people who are responsible for educating her understand what she needs.

And then the school year starts.

And somehow, we are right back where we started.

We are contacting teachers one at a time. We are explaining her disability. We are explaining why something that might seem simple for another student isn’t simple for her. We are reminding people about accommodations that are already written into her IEP.

And honestly, we are tired.

We shouldn’t have to constantly introduce our daughter to her teachers through the lens of everything she can’t do. We want her teachers to see who she is, what she can do, what she enjoys, what she is capable of learning, and what she brings to the classroom.

But when her accommodations aren’t being implemented appropriately, we don’t have a choice. We have to step in.

And that’s the part that is so frustrating.

We don’t expect the school to do everything for her. We don’t expect her to receive special treatment. We don’t expect expectations to be lowered simply because she has a disability.

We expect her IEP to be followed.

We expect the accommodations that were determined necessary for her to have access to her education to actually work in the classroom.

And we expect someone at the school to be proactively making sure that happens.

For example, if an accommodation says she needs assistance with note-taking, simply handing her a fill-in-the-blank sheet doesn’t necessarily solve the problem.

If she has to fill in those blanks while the teacher is teaching, she still has to write and listen at the same time. Because of her disability, she cannot physically write fast enough to keep up with the instruction and process what is being taught at the same time.

So what happens?

She falls behind.

She misses information.

She has to choose between trying to complete the notes and actually listening to the lesson.

That’s not an accommodation that is truly removing the barrier for her.

And this is where we find ourselves having to advocate again.

Again.

And again.

We’ve been doing this for years.

We have had the same conversations in ARD meetings. We have explained the same needs. We have worked with teachers. We have tried to be patient. We have tried to be understanding. We have tried to work collaboratively with the school.

But at some point, we have to ask:

Why are we still having to fight for the same things year after year?

Why aren’t the people responsible for supporting her proactively looking at her IEP and asking, “What does this actually look like for Rylee in my classroom?”

Why do we have to wait until something goes wrong before someone realizes she needs help?

Why are we constantly having to make sure she is receiving accommodations that have already been determined necessary for her?

We don’t want to be the parents who are

constantly emailing teachers.

We don’t want to be the parents who have to question everything.

We don’t want to have to wonder whether someone is actually making sure our daughter has what she needs.

We want to trust the people who are educating her.

We want to know that someone at school is looking out for her when we aren’t there.

Because we can’t be in that classroom.

We can’t follow her from class to class.

We can’t remind every teacher every day.

And frankly, we shouldn’t have to.

Our daughter deserves to have someone at school advocating for her, too.

She deserves teachers who understand that providing an accommodation isn’t always about simply checking a box. It is about understanding the reason behind the accommodation and making sure it actually gives her access to the same education as her peers.

She deserves to be able to focus on learning instead of constantly having to overcome barriers that her IEP was supposed to remove.

And we deserve to be able to send our daughter to school knowing that the adults responsible for her education are doing everything they can to help her succeed.

We will always advocate for her.

We will always fight for her.

We will always speak up when something isn’t right.

That’s what parents do.

But we shouldn’t have to spend so much of our time fighting against the system that is supposed to be supporting her.

We aren’t asking anyone to lower the bar for our daughter.

We’re asking them to help her reach it.

And more than anything, we want to know that when we aren’t in the room, someone else is advocating for her, too.