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Advocacy achieved through awful pop music

“I’m sorry you have to see this,” I said to Lance as I connected my iPhone to the cassette player in my car (it’s hipster to use both a cassette tape and an iphone for music) and turned the volume way up.  What blasted through the stereo was a Katy Perry song that I’m ashamed to say I own, but was SO fitting, and SO terrible all at once. Have you heard her “Roar” song? It’s quite possibly the worst written song ever. BUT, it’s fantastic “music” to pump yourself up to before you go into a fight.

Except, this wasn’t a fight. It was an IEP meeting. I prepare for these meetings like athletes prepare for the big game, which includes a pre-game warm up. I sang the words on the top of my lungs and punch danced as we wound through the streets of our town while  Lance seemed to focus on actively repressing what he was witnessing.

I have a hard time with confrontation. I’ve used the word “fight” to about the work I do to make sure my kids get the services necessary to be successful in school. It’s not a fight. It’s advocacy, and there’s a big difference. My pre-game routine isn’t to get me to a place where I can yell, scream and demand at these meetings. It’s to get me in the mode to advocate, even when it’s hard. Even when it makes everyone in the room really uncomfortable because I will not bend as far as they are asking me to.  For me, standing up for myself and my children is equivalent to win in any sport; TKO in a fight.

Abby’s IEP meeting lasted 3 hours. We started off on the wrong foot to begin with- I was told about the meeting exactly 26 hours before it started. No prior written notice, no agenda, no draft of the IEP proposals, nothing. I was caught off guard. I spent most of Wednesday night combing through IDEA and state laws about the things I knew would be issues at the meeting. I earmarked all of the things in the law that I thought would need to be discussed. I studied and studied and studied.  For me, it’s easier to advocate when I can make federal law the jerk. Without an understanding of IDEA, I can’t do that.  The meeting was good, for the most part. I fully believe that Abby’s team cares for her and wants her to succeed.  I believe that is the case in most districts country wide. I also feel like there has to be some give and take.* I was aware going in that there would be a reduction in total hours of service. That was fine so long as they could show me that her goals would still be met even in a condensed schedule. They could not do that. The person from the district suggested that we simply take out the extra hours, see how it goes and then if she wasn’t progressing we could add them back in. In my brain, I laughed and laughed. In measured tones, I explained to them that I would not remove something on the hope that the district would happily put it back in because I knew adding an unconventional piece to an IEP is damn near impossible. She didn’t disagree. We went around and around. I pulled out my copy of IDEA and read where I believed they were not in compliance with federal law. All legality aside, I kept coming back to this one thing- the one thing we all could agree on- Abby’s goals, which were born out of exhaustive evaluations, need to be met. We cannot fail her. When I spoke of goals rather than hours, of her needs rather than of service time, my point was made.  I wasn’t there to get for my daughter anything that was unreasonable. I did not advocate for anything for my daughter than was not outlined by the law.

I did not scream. I did not cry.

And in the end, I did not sign the IEP.

I had excused all of the therapists by the two hour mark.  I sent home my husband and kids. The school was empty of students and staff, the halls were dark. I sat with the district representative and Abby’s teacher in silence. I had outlined my closing argument. I had told them where I would bend (total service minutes, flexibility in Occupational Therapy push-in/pull-out and consulting time) and where I would not (any reduction in speech therapy time). I used the law to guide the conversation about how we would proceed and then waited. The silence was unbearable to the point where I wanted to pacify. I wanted to make things okay. I wanted to give in to quiet the anxiety that pulsated in my veins…

…to a beat…

…for a moment I was back in my truck punch dancing to pop music. I looked back and saw Abby doing the same. Punch dancing. This wasn’t about me. It wasn’t about them. It wasn’t about the uncomfortable silence beckoning me to give in. It was about her. Only. Her. Grateful that I had followed my stupid routine, I thanked them for the meeting and their understanding and thoughtful discourse, gathered my things up and left.

I’m confident that we’ll come to an agreement that provides Abby what she is deserving of under IDEA. Like I said before, I honestly believe that we’re working towards the same goal. We just have to agree on how to get her there.

Advocacy and IEPs

 

 

* (boring stuff that you don’t need to know) We came from the side of the country where IDEA is interpreted in what I believe is a much more progressive manner. Abby’s Rhode Island IEP had her going to 5.5 hours of school a day, half in a self contained classroom where all of her therapy was done and where they worked exclusively on IEP goals. The second half of her day would have had her in a regular preschool classroom, where she could work on social skills and where there was inclusion with typical peers- in IDEA speak, least restrictive environment, could take place.  Her entire day was spent in language rich environments where they were actively working on her IEP goals.  The program here is 2.5 hours a day, four days a week in an integrated classroom. During those 2.5 hours, she’s pulled out by her therapists for her individual services.   My issue was the reduction of TOTAL hours in school and that they wanted to reduce the time she spent with a speech therapist. Abby’s verbal communication skills have all been lost. She doesn’t even babble like a baby. She does not imitate. The regression took it all.  They can’t REDUCE her speech time without evidence done by evaluations that shows she doesn’t need it.  They can’t have both- the reduction of time in a language rich environment by more than HALF along with a reduction in speech therapy. If anything, they should beef up the services she’s getting to make up for the deduction in total learning time.

10 thoughts on “Advocacy achieved through awful pop music

  1. I wanted to be a lawyer when I was younger but circumstances and life happened and that dream never happened. But I was telling a friend the other day, after a very difficult, emotionally-draining IEP meeting (and I too listened to Roar beforehand!)that I can probably add lawyer now to my list of job titles that come with being a parent to children whose rights are still being denied. I prepare for meetings with much the same level to detail as you with pouring over the laws and the facts. You are a great advocate for your child. Hang in there and keep pounding.

    “If you have the facts on your side, pound the facts. If you have the law on your side, pound the law. If you have neither on your side, pound the table.”

  2. Lexi, thank you for this. “Roar” is getting me through my divorce and I am not ashamed of it. We don’t need to make apologies for what gets us through the day.

  3. Abby deserves all that you are working toward. It has been proven that she needs the time, the exposure to classmates and the extra therapy. They cannot deny that! Having been the teacher at meetings like this, and fighting for “my” kids in the IEP meetings, I send caring and strength your way. Abby is worth this, every child is worth what they NEED to succeed in life. I’ll be praying and thinking about you and Abby. Hang tight to your rights. ROAR!!!!! (I love that song!) samm

  4. Shame on anyone who tries to reduce a child’s services. It isn’t like you’re asking for speech therapy for your child because you just feel like it would be fun for her or so you don’t have to work with her yourself or something… she’s entitled to it, the school district is required to provide it, and of course she deserves AND needs it!

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