IEP Survival Guide

Let’s talk about IEPs.  I have a unique perspective on these meetings that are required and tend to be quite stress producing for us parents.  After I graduated college, I began my professional life working with adults with developmental disabilities.  I have led hundreds of plan meetings as the professional.  I have interacted with parents and family members as the professional. 

When I met Steve, Brandon was 5 years old and was starting kindergarten.  When his IEP rolled around, Steve asked me to come with him.  Of course, I said yes.  Walking into that meeting as Steve’s fiancé was much different than walking into a meeting as the professional.  There were 9-10 people sitting around a table because all the therapists and teachers must be there.  It was intimidating and a bit unnerving.  I finally understood parents stress and anxiety before the IEP meeting (this also made me better at my job). 

Steve and I were talking last night about IEPs and came up with a list of 5 things we think every parent should know before walking into that meeting.

Steve and I like this one!

You Know Your Child Best

Remember that you know your child best.  While we have been blessed with many wonderful teachers, therapists, and paras, we still know our child best.  Don’t just assume that everyone in the room has your child’s best interest at heart.  Most of the folks at school do.  But there may very well be some that don’t. 

I remember sitting in an IEP meeting a few years ago and one of the therapists said she didn’t really care what was happening at home.  She was focused on what happens at school.  This was in response to asking for the therapists to send something home describing what they did with Brandon.  I thought it would help us talk with Brandon about his day.  Nope, she was too busy and didn’t have time for that.  I do believe I cried at that meeting.  I just wanted help with talking with Brandon about his day.

Paraprofessionals

Always request at least one of the paraprofessionals who work with your child to attend the meeting.  The paras are with their students more than anyone else at school.  They are the ones walking with them to the bathroom, supporting them in the lunchroom, swinging with them on the playground, helping get them on/off the bus. 

The paras bring a whole different perspective to an IEP meeting.  One of Brandon’s paras from years ago told me about Brandon’s first girlfriend.  Her name was Holly and they were in first grade together.  The para told me how Brandon would watch her on the playground and if anyone else got close to her, Brandon would step between them.  He loved to sit by Holly at lunch.  They were buddies.  Brandon would talk about Holly at home, but I had no idea who she was.  I asked the teacher, who asked the para and the para is the one who had the inside scoop.

Ask Questions

Ask as many questions as you want.  One of the more frustrating things for Steve at IEP meetings was the use of acronyms for almost everything.  Working with adults with disabilities, I knew what all the letters meant.  Here’s a small list of acronyms that I hear a lot:

                IDEA – Individuals with Disabilities Education Act

                IEP – Individulized Education Plan

                OT/PT – Occupational therapist/physical therapist

                SLP – Speech language pathologist

                ABA – Applied Behavioral Analysis

                ESY – Extended School year

                FBA – Functional Behavioral Analysis

And the list goes on and on and on.  Poor Steve, he had no idea what some of these meant.  We spent a couple of years with him whispering to me “what?” and me explaining what it meant.  We also decided at some point that Steve should be asking the teachers/therapists what they are talking about.  I do not believe teachers and therapists do this intentionally.  It’s just the language of social work.  But sometimes, they do need reminders that not all parents understand the jargon. 

I would also encourage anyone to ask questions about the goals that are set, because these are set in stone (not quite stone, but they are hard to get changed once they are in print).  One of the best pieces of advice I ever received when I was working was about goals.  This person said to me “yes, we have to have goals, but they don’t have to be stupid goals”.  Exactly!!! 

The school worked with Brandon for five years on learning to tie his shoes.  After the second year, we asked that it be stopped.  They argued with us about this for three more years.  We were told he was making progress and that is all that is needed to continue the goal.  Except he was not making progress.  It didn’t start as a stupid goal, but after five years, it was a stupid goal.  Brandon still doesn’t know how to tie his shoes.  He has adapted.

Take Notes

Make sure to take notes and hold people accountable for anything incorrect or missing in the final IEP.  Here in Missouri, parents are not required to sign the annual IEP.  I wish we were, but at least we get noted that we attended.  If there are things in the IEP that were not discussed and you don’t understand, ask questions. 

After one IEP, I received the “final” copy in the mail.  While reviewing it I noticed that number of ABA hours were reduced.  That had definitely not been discussed in the meeting.  I called the teacher, she was aware of the reduction in hours, but had forgot to tell us.  How do you forget to tell the parents?  That didn’t work well for me and Brandon got his hours back.  And I got an updated “final” copy.

Have Supports With You

Take supports with you if you feel it is needed. We have done this a couple of times when we felt we needed extra help.  IEP meetings can be tense and sometimes, quite emotional.  It is hard hearing everyone talk about what my child can’t do with little mention of what he can do.  That has changed over the years, which is a good thing!

Having an advocate with us really, really helped when we were trying to get ABA services for Brandon.  The ABA therapist at the school was very uninterested in providing ABA services to Brandon.  She told us how she was overworked and had too many students already to deal with.  We were not quite sure how to push this issue without yelling at people (they do frown on yelling at the IEP meeting).  The advocate was able to communicate our wishes way more politely than I was and we got what we wanted for Brandon.

After the meeting?  De-stress, have a glass of wine and relax a bit.  You deserve it!

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