May was a really big month for the Groves family. We got our county school system to agree to place our daughter in a non-public school to address her unique educational needs. She’s never been happier and more enthusiastic about school, which I largely attribute to a combination of better atmosphere and finally feeling like she can be successful in her education.

Throughout what has been a 2 year process, I’ve felt compelled to write about what was happening, but also felt it was too early to talk about. I also didn’t want emotions to drive too much of what I want to say. But this topic, and our experience, is also too important not to share. Over time, my wife and I have joined groups on Facebook, Reddit, and elsewhere specifically oriented toward learning disabilities. Among the most popular topics in these groups is the IEP process. For those who don’t know, IEP is Individualized Education Program which is defined as:

In the United States an Individualized Education Program (IEP) is mandated by the Individuals with Disabilities Education Act (IDEA). Wikipedia

Countless posts appear in these forums discuss the frustrations and despair that parents have with the IEP process. Over and over parents in theses groups complain that their child’s needs aren’t being met by the schools. I don’t know whether that is consistently the case for all of those complaints, but what I can say is that our experiences have been vastly similar to all of the primary themes you see throughout those other parents’ complaints. I want to share mistakes and lessons we’ve learned along the way.

There’s no “we” in IEP.

The first mistake we made was believing the school staff were on our child’s side. This was not the case and we were incredibly naive for believing so. The school Principal and/ or Assistant Principal are employed to administer the business of the school and manage the school’s personnel. That’s why they’re referred to as Administrators. They may have a background in education but their responsibility is to achieve the mission of the school, not your child. They will tell you that it is their duty to look after the well-being of all of the kids in their school – and that’s fine – but that is not the same as looking after the specific needs of your child. In short, they’re not on your side, they’re on the school’s side. Know this and remember this at all times. Don’t be fooled by their claims to the contrary. The only people truly on your side are you.

The special educators are, at least in my opinion, much more likely to care about your child’s specific needs. People typically don’t choose to specialize in special education if they don’t feel empathy for children with special needs. The problem is that they’re responsible for every child with special needs in their school. In a school with possibly hundreds of children, there may be only a couple of special education staff on hand and they have to handle all of the children in the school who have special needs. As is often the case in the realm of accessibility, this specialized staff is often spread thin. And, as before, while they may be more likely to care about your specific needs than anyone else, they also have their own individual goals to achieve with respect to all of the children they’re responsible for. They’re also unlikely to buck the system to advocate for your child.

Understand your rights and responsibilities

All children in the United States are entitled to a “Free and Appropriate Public Education” – whatever the heck that means. The subjectivity in that phrase is probably the source of a lot of confusion and frustration surrounding the IEP process. For the most part it means that your child is entitled a free education by the public school system and that the quality of the education must meet the quality that all other children receive. For children with special needs, this latter point can be pretty hard to define, but that’s what the “Individualized” part of “Individualized Education Plan” aims to address. Children with special needs must be given the necessary adjustments to their education necessary to allow them to learn.

Given the above, you have the right to expect any & all accommodations necessary for your child to learn. You have a right to expect that the school will define measurable goals to track your child’s success. You have the right to revisit the substance of the IEP as necessary to adjust goals or adjust the plan to ensure the goals are being met. You don’t have a right to expect anything extraordinary for your child.

As the parent, you are ultimately the one responsible for making sure that the school is doing what is necessary to ensure the success of your child’s IEP. Never assume that they are doing everything they should be doing or even what they said they’d do. You can – and should – ask for regular progress reports including objective measures toward your child’s goals. Missing IEP goals is an excellent reason to demand an adjustment to instructional times or approaches.

This isn’t what you do, so find someone who does this stuff

While I might know a lot about web accessibility, I don’t know anywhere near as much as I needed to know when it comes to special education. As a consequence of my ignorance I was far too willing to trust that the school knew what was best for our daughter. When it became clear that our daughter wasn’t successfully learning under her IEP, our ignorance became our #1 enemy. We had no idea how the process was supposed to work and no knowledge of what sorts of accommodations were appropriate or possible for our child.  Considering the volume of information out there on the web, we expected to be able to learn about this rather easy but it just wasn’t the case especially when it came to our county’s specific processes. Our school and our county wasn’t terribly forthcoming with this information and when it came to accommodations they claimed they were doing all they could. The best thing we did was hire an advocate. In our case our advocate was also a lawyer with a lot of experience and success working with our county.  She knew far more about special education, our county’s processes, and the law.  Unfortunately, affording a lawyer is out of reach for a lot of people. Don’t feel dissuaded by this, because there are often local advocacy groups, foundations, or disability rights organizations that can provide assistance and some attorneys may take on pro-bono work.

Get support for you

My wife is incredibly strong, organized, and assertive and together we make a great team. In addition to each other, we also have people we can turn to for emotional support. My boss, Mike Paciello and my coworkers at The Paciello Group have been extremely supportive. This stuff is very emotionally draining. If you don’t have your own support network, you need to find one. You are not alone in this and there are a lot of other people, possibly in your own network of friends or neighbors, who have gone through this as well. Reach out for support when thins get too stressful.

Never give up

If your child needs an IEP, chances are they’ll need one throughout their education. You owe it to your child to never give up in your efforts to ensure they get a proper education. The benefits of becoming educated speak for themselves and it is crucial that children who learn differently are able to do so.  Do whatever you can to make that happen and know that you must keep fighting no matter the setbacks you may face along the way.