We Help People And Families Affected By Autism

As the parent of a child with autism spectrum disorder (ASD), I am a member of my child’s IEP team (the group of professionals that works to implement Casey’s individualized education program as mandated by the Individuals with Disabilities Education Act).

I am also the group’s coordinator. In other words, I am the glue that holds together the team of doctors, therapists, teachers, administrators, and staff for extracurricular activities. And as the one who knows my child the best and is most invested in his development, I am a crucial member of the team.

I take the job of IEP team member very seriously. It is a contract of service and one of the few safeguards we have for our kids. So, about two months before my son’s IEP is up for renewal, I brace myself and hunker down to work.

My first step is usually to write a formal letter to the team and administrative staff to let them know that I’ll be audio-recording the IEP meeting. Since the IEP is a legal document and, therefore, important, I record the process because I don’t trust my puny, overwhelmed brain to remember everything that happens during the meeting.

In the letter, I also express my desire to see working versions of the goals as they will be written in Cory’s IEP from each team member a week or two before the meeting. If I don’t see the goals ahead of time, I request that the upcoming meeting be used as a workshop session and that a second IEP meeting be scheduled for shortly afterward.

With formalities out of the way, the real work begins.

I generally spend 30–40 hours of the next month evaluating my son’s progress, observing him in school, talking to other parents, emailing and talking to his school team, and scouring the Internet and other resources to figure out what the best next steps are for my son.

Honestly, I don’t like to use vacation days from work to observe my son at school or to spend my evenings writing emails to his therapists and teachers when I just want to crawl into bed. And I hate nagging the rest of the IEP team just as much as I’m sure they hate being nagged. But this is my kid. He’s depending on me to be his voice and look out for him. And he is the most worthy cause I know.

By the time the actual IEP meeting rolls around, I’m a haggard mess. At that point, you could talk to me about a PLEP, a BIP, or AC/DC and it’d all be the same to me. (For the record, that’s a “present level of educational performance,” a “behavior intervention plan,” and the Australian hard rock band.) Obviously, I would not be able to read and fully comprehend a 20-page legal document in the one hour allotted for the IEP meeting—all while six pair of eyes stare at me from around the table! For this reason, I have yet to sign the IEP at the meeting. Taking it home and reading it again while snuggled in the cocoon of a blanket is so much more effective.

After I sign the IEP and the rest of the IEP team recovers from shock, I do my happy dance and thank everyone for their time and service. We all heave a collective sigh of relief that we have a plan that will take my son into the next stage of his development—and that we don’t have to see an IEP again for a while!

Cory Gilden is a former teacher, longtime autism advocate, and a research assistant with the National Leadership Consortium on Developmental Disabilities, earning her doctorate from the Joseph R. Biden, Jr., School of Public Policy & Administration, as well as the parent of a son on the autism spectrum.

This text was edited for consistency of language and message and appears in the July–September 2014 issue of the Autism DelawareTM quarterly newsletter, The Sun.

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