We Took Control of Our Child's IEP Meeting and This Happened...

My son’s first individualized education program (IEP) was prior to entering kindergarten. At the time he had no diagnosis other than PPD-NOS — he would later be diagnosed with autism. We had never seen an IEP report and frankly, we were overwhelmed by the sheer volume of the report.  But we read it, every word on every page, looking up definitions and googling the parts we didn’t understand.

We found mistakes: his name, his date of birth, his pre-school and day care history, just to name a few. When we approached the school district with these errors, we were told, “It doesn’t matter, he’s getting services.”

What?

My wife insisted we move to another district. Immediately after closing on the new house in the new school district, we registered our son for school, and “Oh, by the way, he needs an IEP!” That was five years ago.

The new school district is awesome, the “learning support” programs are first rate as are the people who teach in those programs.

Since starting kindergarten, our son has been placed in six schools, in five different programs, with four different teachers, in five years. We’ve been searching for the program that is right for him. Naturally, we have had dozens of IEP meetings, reading every word on every page of every report. We insist on having the written report a full week prior to any meeting, so we can read, digest and make a list of comments or questions for the meeting. We also take copious amounts of notes during the meetings.

I don’t say that to present ourselves as the best parents ever, because we are not, by any stretch. We are still trying to figure this out, as are thousands of other parents who do exactly the same things. But no matter how much we do, sometimes that is not enough. 

In the current “Intensive Support” program that he is in and has been in since beginning fourth grade, we have had no fewer than six IEP meetings in the first seven months of school. Some were scheduled by the school, some by us and one was an emergency meeting due to our son “eloping the school building.”

At this school, (a county intermediate unit specializing in autism spectrum disorders) the IEP meetings followed a strict routine. The teacher would present a powerpoint, the Behaviorist would present a powerpoint, the Psychologist would present a powerpoint, the case manager would skim through the report and folks would start to leave the room before we could ask questions or give our input. That’s not how this is supposed to work and we had had enough.

The last IEP went a bit differently, we had our own powerpoint. We insisted that we give our presentation before anyone else in the room. It was 10 slides long, talked about our son’s history, diagnosis, strengths and weaknesses, what our goals were for the school year, for middle school and our long term goals. Our son’s picture was on every slide, lest they forget we are talking about an individual rather than a faceless “one-of-many.” Remarkably, they agreed.

Then something wonderful happened, they were the ones taking notes and asking questions. We presented information they should have had, but was lost in the multiple moves to multiple schools and programs.  They agreed to a new functional behavioral analysis (FBA), they agreed to allow our behavioral health rehabilitation service (BHRS) team into the school for longer observation periods than are policy. They took us more seriously than they had ever before.

After the nearly three hour meeting, the principal asked us to stay behind for a private meeting. In that meeting, she revealed she has been with the program for 18 years, and we are only the second family in all that time to control the direction of the meeting, present a powerpoint and cause the staff to re-think the IEP, based on the information we presented.  She wanted us to know that she appreciated what we did and assured us that it was very useful information that “the team should have had.” Much better than the admonition we thought we were going to get.

We all advocate for our children and we all do the best we know how to do.

But, if you are not happy with the IEP team members, ask to change them out; if you find errors in the 60 some pages of the IEP report you are asked to sign, call them on it; if you feel like your voice isn’t being heard, speak louder — figuratively and literally when necessary; if you have questions, insist on answers rather than rhetoric.