I.E.Who?

Does your kid have an IEP? Do you have an advocate? IEP or a 504?

Do you understand any of these questions?

Don’t worry, about 10 months ago I didn’t either. I remember first hearing terms like IEP, educational advocate, and 504. I would do my best to make it seem like I understood, when actually I felt like a clueless, incapable, stressed out, drowning-rat mom who wasn’t possibly capable of handling the realities of parenting this child. Whoops, I mean, um, did I just say that out-loud?

I’m hoping if I tell you a bit about my own IEP journey, it may be helpful for you while going through your own process. First of all, I’ve recently talked with some of my friends who do not have children, or who don’t have special needs children, and I’ve found that things like IEP’s and educational advocates are (surprise) not things most people are born knowing about. This is complex, difficult, and exhausting stuff. So take a breath, and cut yourself some freaking slack. Pour a glass of wine, because here we go!

Before I dive into this, I’d like to give a disclaimer (yes I’m an HR lady and I really like to qualify things with disclaimers). I’m not a special education or autism expert. This is one mom’s own experience with my child, who has Level 1 Autism and Anxiety. 😊

IEP stands for Individualized Education Program. An IEP is a legal document that is developed for each public school child requiring special education.  Here is some useful guidance available from the US Department of Education about IEP’s. An IEP is developed in cooperation between the parents of the child, a case manager or representative of the school district, the student’s teacher(s) and possibly principal, and any provider of related services to the child from the school district (in Sully’s case, this included the speech therapist, occupational therapist, special education specialist, and school psychologist). Parents also may choose to bring an educational advocate, social worker, and/or lawyer (more about this below). Yes, that’s right – Sully’s IEP meetings have had 10 people present. The IEP details the educational goals for the child, and any special accommodations the school will make for the child. Here’s the thing – in the US, public schools are legally required to give a child any accommodations she requires. If they can’t provide them in their district, they must send the child elsewhere – to a different public school district, or even to a private school. The district also must provide transportation to this different school, and if it’s private, the school district pays the tuition. A 504 plan is similar to an IEP, in that it’s a document developed to outline the services to support a child with a disability. But, in general, children with 504 plans do not require individualized specialized instruction, as do kids with IEP’s. I’m not an expert on 504 plans, because Sully doesn’t have one. But I found this useful comparison of IEP’s and 504 plans.

As you might imagine, the parents often want the child to have a lot of services, and the school district doesn’t necessarily want to pay for those services. So what often happens is that there are arguments between the two groups about what services will be provided. In order to even get to this point, the student must have a diagnosis qualifying them for the IEP (such as autism). In order to get this diagnosis, most people have gone through a Neuro-Psych evaluation, which results in a 20-30 page document. To get the Neuro-Psych evaluation, Sully waited on a waiting list for eight months. Then the school district orders a whole menu of tests they do within the school. Then, as the groups are negotiating, there may be additional tests completed to get second opinions, to support the child’s need for services.

So, as the parents are arguing with the school district for more services, what I’ve noticed sometimes happens is the poor teachers and specialists are caught in the middle. I truly believe that teachers are some of the coolest and best people. I mean, my kid’s teacher is just great, like everything you could ask for in a Kindergarten teacher. You can tell she loves her students and she loves her job. And she’s in this meeting where people are writing out a legal document about how she is supposed to do her job. What a freaking nightmare for the poor woman…I’m sure she’d like to give Sully everything he needs, but not only does she have the limited resources of the school district, but she also has 15 some-odd other kids to worry about in her classroom.

Now, in our case, after we had the diagnosis we sent the neuro-psych evaluation to the school district’s special education department, requesting they begin the IEP process. They then sent us a meeting notification for the first IEP meeting. We went to that meeting, discussed the additional tests they wanted to order for him within the school district system, and then after those, they sent us the results. They also sent us a second IEP meeting notification. We went to that and discussed the findings of the testing. We discussed if everyone in the room agreed with the diagnosis of autism and anxiety, which (thankfully) they did. We discussed (a nice word for argued) over what goals and services we’d like on the IEP. We also went through a checklist to identify if Sully might be a target for bullying. Everyone agreed he was, and we talked about different ways the staff would proactively address this. I am, of course, very grateful they addressed this now, before it became an issue, but I swear I literally heard my heart break in the meeting. A week or two after that meeting, we received the draft of the IEP via mail. We reviewed it with our advocate and sent in a partial acceptance along with the parts we’d like changed. Our advocate also recommended I schedule two additional evaluations, speech and O/T, to get second opinions. We now have a third IEP meeting scheduled, to discuss that version.

Now let’s talk about educational advocates. When Sully got his diagnosis, my boss, a father of four, gave me the advice to “get an advocate.” I’m glad I took his advice, because I really don’t know how I would still be alive with all my hair the same color without the advocate. So what is an educational advocate? They are individuals specially trained in disability law, are very knowledgeable about the IEP process, and the child’s school district. Your kid’s advocate is just that – their job is to argue with the school district about what services your child needs. They will also help you to understand the IEP process and advise you about the document. You will have to pay this person, but in our case it was worth every penny.

Now I am not a person who becomes easily emotional, especially not in meetings. In my job, I frequently find myself in difficult situations – I discipline people, I council them on poor work performance, and I help them with personal and emotional problems. I have fired quite a few people. But I never become emotional in these situations. I am VERY good at compartmentalizing my feelings. Even in my personal life. I remember when I was pregnant with Sully, and my husband Kevin and I created a will and bought life insurance. People who had done this before asked me if I cried, remembering how hard it was to talk with your spouse and lawyer about what would happen if the other person died. I was embarrassed to admit that no, the thought of crying never occurred to me. To me those things are black and white – business transactions which make rational sense. There’s no need to be emotional. I remember reading that when a woman sleep trains a baby, and the baby begins to scream and she can’t go in and comfort them, every ounce of her womanly instinct screams out to go and comfort that baby. When we did sleep training with Sully, I sat at the kitchen table and had a glass of wine and calmly timed how long it took him to stop. I had read the book, I had a plan, and I knew it would work (and it did). It was black and white. I had compartmentalized my feelings – put the pain outside of myself. I think that’s what I do when I run long distances. Often when I’m on a long training run, I suddenly realize I’ve completed 20 miles, and I don’t recall the last five. I feel surprisingly ok, and I complete the run and walk through my front door, and suddenly feel like I’m going to die, my body screaming out from every pore “WHAT THE HELL IS WRONG WITH YOU, YOU CRAZY WOMAN!” I guess I remove myself from the physical task of running 20 miles, I just do it, and contemplate the pain afterwards. When I terminate someone’s employment, I do the same thing. I go home at night and think about it, and my heart goes out to them.

When the school district sent me the results of Sully’s testing, I felt the familiar sense of dread I’ve felt every time I get a Preschool progress assessment, and when I saw the Neuro-Psych evaluation. The feeling that someone was about to tell me everything that was wrong with my baby. The feeling that they were going to say, like his Pre-school teacher had once said, “Sully, he’s just...different.” I sat reading the results and felt like someone was ripping out my heart, Game of Thrones HBO style. I told Kevin that I felt like someone had cut out my heart, put it on a piece of paper, and assigned it scores.

Then we went to the IEP meeting and discussed the scores. So I got to feel like they had ripped out my heart, laid it on the table, and argued about how they would, and would not, make it better. I remember laying my hands on my thighs and squeezing so I wouldn’t scream. At one point, I completely shut down, and trusted our advocate, Summer, to take care of it. Summer is also Sully’s therapist, and she knows him, and us, well. I trusted her completely to take care of the situation, and she did.

Part of an IEP meeting which was startling, and disturbing was that we had to fight our parental urge to argue that Sully is the complete best. For example, when someone asks me if Sully has a hard time transitioning from task to task, my maternal instinct is to argue that Sully does ok, as long as you prep him ahead of time and handle it appropriately it really isn’t a problem. But Summer taught us that if you say that, the school district will then argue that he needs no social emotional interventions to help him transition in the classroom. I had to catch myself and allow his advocate to speak up and ignore my mom voice screaming “MY KID IS AWESOME AND YOU ALL ARE CRAZY, THERE IS NOTHING HE NEEDS TO WORK ON HE’S THE BEST!!!”

So yeah, I’m not sure what’s harder, running a marathon or the IEP process. It’s tough. But, looking back, I wish someone had told me that it’s ok to not understand it at first. I am grateful I received and listened to the advice to get an advocate. I’m grateful we live in a wonderful school district with amazing teachers and administrators. And I’m really grateful for wine. So my advice is an educational advocate, and wine. Lots of wine.