How I Helped My Child Get an IEP: This Florida Parent's Story

The truth is sometimes you don’t know.

Sometimes you have teachers expressing concerns about performance or behavior but there’s no easy answer regarding what’s going on.

And sometimes it may just be that parental gut feeling gnawing at you that something is not quite right. Please listen to it!

I mostly fall into the later category. When my son was going into 1st grade, I knew some of the obvious needs, like speech therapy, but had a gut sense that there was more to it. I had only known him about a year (I adopted him after his dad and I got married) so I had no true background experience with his personality, behaviors, strengths or challenges. However, between mother’s intuition and a career with years of working with adults that had differing disabilities and challenges, I knew something was off. But even with almost two decades of experience in mental health and intellectual/developmental disabilities, I could not pinpoint was the true situation was at the time. Of course, this was almost 20 years ago and the “autism” that people mostly knew about in my fields then was the children and adults with severe behavioral and intellectual challenges. Everyone had heard the term Asperger’s, but these folks were just “quirky” and “didn’t really need supports”. Many people thought they just needed to “learn better” and “be different”. Act like everyone else. Blend in.

In my post about Why It's So Hard to Get Supports (click here to read), one reason presented is procedural constraints. I am the quintessential poster child for that! I knew something was not right. I knew that he needed some help. I also knew that I had no idea what that looked like. So, I asked around and found out who THE professional psychologist was to go see. I’m thinking it’s summer and I can knock out all of this assessment stuff and be ready for day one of school. She worked with the school system and was well known for her assessments and expertise. Awesome! I get an appointment. She diagnoses him with auditory processing disorder and made recommendations for speech and language therapies. I also had him see a speech/language pathologist to get more assessment in that area of need.

So …Come on this journey with me.

I get there at the start of school, presented these assessments and asked about getting a meeting to discuss an IEP. I’m thinking “they are going to love all the work I got done ahead of time and how helpful this was going to be”. Spoiler alert! I was wrong. The answer I got was “school policy is 6 weeks of classroom observation and intervention before decision would be made on the necessity of a 504/IEP. I consider myself a reasonable person and asked “why?! when you’ll look to these professionals for their assessment of the needs my son had”. I was readily dismissed with the reminder of the school policy: 6 weeks. Now, I have never been a bow down kind of person but with my kids, I absolutely won’t give up. I leave the school pretty pissed off. My “logic brain” is screaming that this is ludicrous. I’m sure others have left this situation feeling confused, frustrated, and maybe even a little “am I crazy?” I, however, knew what I knew, but I also knew that I didn’t know everything.

So, at the beginning of the 6th week, I’m back at the school. I’m pretty much confirming what I’d stated weeks earlier and now they agree. I requested an IEP meeting to discuss the services he needed to be successful. A meeting was scheduled pretty quickly as I had the assessments already in hand so they only needed review by the actual district staff for ESE services. Additional supports and services would be started for math, reading and language as well as speech therapy. Occupational therapy was also recommended for some fine motor issues with writing. This had to be an officially requested services in the IEP. Now we wait … again … thing I didn’t know #1. Ok I thought. Not fatal; I can wait a little while.

A month or so later, he gets a new teacher. I let her acclimate and get to know my son for a couple of weeks before stopping by one morning to check in, share my insights, and answer any questions she might have. She knew he left the classroom for math and reading/writing and had a speech therapist but that was it. I’m a bit dumbfounded at this point. I ask about her knowledge of the IEP and the goals etc. She had not been briefed on this yet. (Remember in my post about why it’s so hard, I mentioned short staffing, inconsistent training and inconsistent application of the IEP goals? Yep. So that happened.) I headed straight for the front office and asked to speak to guidance. I asked for some explanation and received something vague and very generic. I requested another meeting to get everyone on the same page. Can you guess what they said?

“Typically, there is only one IEP meeting per school year.” Now, accepting this as fact (thing I didn’t know #2) I replied with “call it whatever you want – pissed off mom meeting – but we’re having another meeting. They agreed to hold an IEP review meeting. I also asked the status of the OT eval and “he’s at the top of the list” is what I’m told. We are almost halfway through the school year at this point. I’m starting to feel frustrated and defeated. BUT I’m stubborn by nature so I wait for the next meeting.

This meeting happens after winter break. I ask before the meeting about the OT eval. “It’s done! He was moved to the top of the list.” This was incredulous as I think to myself “well, what child was moved down??!!” (I do already know that the squeaky wheel gets the oil. I just don’t like that it has to be that way.) During the meeting, we review the OT eval, approve services, and sign off on the new goals. I almost accidentally learned that he was currently on a behavior plan. What???!!! One thing I do know is that this is unacceptable, bordering on illegal, without guardian knowledge and consent. I not so nicely demand to know everything about this. I was told that he would get extremely frustrated and cry to the point of disrupting the class. After asking why the hell is this the first I’m hearing of this, I ask what is in place as a consequence to the behavior. He is taken to the guidance office to play board games, draw etc. until he calms down. Although not a horrible consequence as he did disrupt the class, I let the team know that I didn’t want a positively reinforcing consequence as he is getting what he wanted – getting out of class to do fun stuff. I was OK with sitting in guidance, front office, whatever, but wanted him returned to class as soon as possible so that he did not miss academics. I also let them know that this behavior should quickly be resolved, and I wanted him off of the behavior plan.

This is why parent advocacy is so important – more on this later! I promise!

By the end of the school year, my son was getting his therapies, progressing in math/reading/writing and gaining some self-confidence. He was off of the behavior plan. (This required another meeting to remove this ‘support’ from his IEP. Ridiculous red tape kind of thing but officially the thing I didn’t know #3.)

I can hear you thinking – how many things did you learn that you didn’t know you needed to know?

The easy answer? I stopped counting LOL So I say to you -- don't even start because there are too many to count and everyone has a different experience.