“Mrs. Lightner, we’ll add the additional hour of OT to Kevin’s plan, but I want you to know that he is the only child in the county who is receiving more than one hour per week. That’s just not our model.”

YES! Success! I did it! My son was only 2 years old, and I was going to ROCK being an IEP Mom! And what is an IEP mom, anyway?

What is an IEP Mom anyway?

I mean, after all, I already got him more services than any other child in the county, right? How easy was that?

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Pffft. As they say, you don’t know what you don’t know. I hadn’t done any IEP training then and basically had no idea what I was doing.

Another weekly hour of OT did precisely nothing for him. It didn’t double his progress, as I imagine I was thinking in my head at the time (it was over 10 years ago).

IEP Moms

The thing is, I knew my son needed something…I just didn’t know what.

Recently, a fellow IEP mom defined it for me. She said to another IEP mom:

I wasted a lot of time focused on little details that I couldn’t change because I did not know what else to fight for.

MT, parent and parent advocate.

That sums it up, 1000%.

I knew Kevin’s IFSP (which is what PA does for babies 0-3) was insufficient. I just didn’t exactly know what to do. So I focused on one little tidbit, rather than looking at the big picture. And, in all likelihood, I was being lied to.

I mean, c’mon, I live in one of the largest counties in the country, with almost 1 million people. So how likely is it that my kid was the first to ever receive more than one hour of OT?

I didn’t know what I didn’t know. When you know better, you do better, right?

What is an IEP Mom?

An IEP mom is a mom who has a child with an IEP. I use the term frequently, especially since more and more people are rejecting the term ‘special needs.’

I take a lot of guff on my site for frequently using “IEP moms” and am reminded that “Hey, Dads attend IEP meetings too!

Yes, they do. And so do grandparents, foster parents, aunties, and a whole host of other important adults in kids’ lives.

IEP Mom and her son
Here we are, many years later, enjoying an afternoon at Knoebels.

An easy IEP

Now that I look back over a decade of working with various families, it’s crystal clear. Why is it that some moms just make the IEP process look so easy, and some are in a continuous battle? One group focuses on the big picture, and the other doesn’t.

One group follows the IEP process, and one doesn’t.

Sure, to some extent they do. But mostly they are just constantly throwing handfuls of spaghetti at the wall. Sometimes some of it sticks and sometimes it doesn’t.

Successful IEP Moms Focus on the Big Picture

Now, before we get into this, I want to say: Clear your mind of preconceived notions and biases. I know that some of you are thinking, “Yeah, but my school does this…and then they say that…and then they always say no….”

Most IEP teams are doing the best they can with what they have. Sure, there are some jerks out there, but they are the minority. And, by taking the small picture approach, you’ve made it very easy for them to say NO.

As did I. I was asking for a very specific item-one additional weekly hour of OT. That has a very specific cost attached to it. It’s very direct, yes or no.

What I should have done is heeded my own future advice and looked at his IFSP as a whole.

When I learned to do that, guess what? He got Vision and O&M assessments. I took him to feeding evaluations and began the SETT process.

And then as a result of that, started receiving Vision Teaching and O&M training from TVIs. He began intense feeding therapy. Then we purchased therapeutic seating (which enabled him to better focus on fine motor tasks) and AT to begin communicating.

We applied for Medicaid and then got wraparound behavioral health, which meant an additional 35 hours of direct services each week. He was the most programmed 4-year-old you’ve ever seen.

And finally, IEP progress.

And he made progress.

I hadn’t been looking at IEP Present Levels and rate of progress, I was focusing on services. I hate to use the analogy of “battle and war” because I don’t want parents to think of it as a war with the schools. We need to be collaborative partners in this.

But the fact is, I just kept fighting the battle for one more hour of OT, and finally I won that battle and was quite pleased with myself.

I was only focused on one specific item and in turn, gave the team one specific item to say yes or no to.

How to be a Successful IEP Parent

Ready? Let’s dig in. First I want to give some overall tips on how you can be a better advocate for your child.

  1. Focus on the big picture. That’s not to say that you neglect the nitty-gritty details of the IEP. But it’s very seldom that an IEP is solid and appropriate and being followed with fidelity, and just has one little detail to be taken care of. In fact, if the IEP is solid and being followed, chances are parents won’t even notice that one little detail. There is very seldom just one thing wrong with an IEP. You need to look at the big picture and work to fix ALL of it, not just one detail.
  2. Accept what you cannot change. Things like the speed of the IEP process. Or the fact that your child has disabilities. The behavior of others. Facts like “the good guy doesn’t always win.” You could go all the way to a Federal appeals court and still lose.
  3. Participate in the IEP process, all the time. You don’t want your team members only thinking about the IEP during one meeting a year. Neither should you.
  4. Use the IEP process and stick to the process. This will calm you because you will have a designated plan of action (below) rather than just putting out fires and flailing all the time.
  5. Stay child focused. In our group, I always say this to parents, particularly when they complain about their school. Instead of “there’s always a substitute” change it to “my child is not receiving consistent XYZ per his IEP…” It’s not about what school staff does, it’s about what your child needs and is to receive, that isn’t happening.

The child has an IEP, but it’s not working, we need help.

Ok, my first bit of advice, and most important: DO NOT wait until the IEP meeting.

I mean it! If in your head, you’re thinking, “Ok, I have a list of concerns, I’ll just bring them up at the next IEP meeting…” NO! NO! I’m wagging my finger at you. Do not wait!

Parents have several opportunities to provide input in the IEP process, and some of them occur BEFORE the IEP is drawn up.

Please do not wait until the IEP meeting. Start now. Today. Here are the steps:

Keep in mind, this situation didn’t develop in two hours. It’s not going to be resolved in a two-hour meeting. It likely will take lots of back and forth, several meetings, and so on. But, I have found that with perseverance, it levels off in 3-6 months.

Ok, that is simplifying it a bit into 6 or 8 steps. I have a more thorough post of “How to get an IEP for my child” here.

Lastly, one of my main mantras to live by:

“We cannot change the cards we’ve been dealt, only how we play the hand.”

So rock it, moms. Go play the hell out of the hand you’ve been dealt.

cards we're dealt

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