Accidental Advocate Redux

We met today with Sky's teachers, principal, and a representative from the public school system who is the "teacher of record" for special education (we'll call her Valerie) to gauge his progress with the RTI (Response to Intervention) that was set up at the last meeting. The RTI resulted from my attempt to get a Functional Behavioral Assessment for him because it is absolutely clear that the behaviors triggered by his autism negatively impact his learning. Since Sky goes to a private school, the public school representatives who are in charge of doling out various services to kids who qualify for special education have been telling me that 1) he is not eligible for the same services that he would get in public school and 2) because he is "high functioning" he wouldn't qualify for services any way. So, they have argued, why push for an IEP or 504 Plan when his teachers are willing to work to make adjustments anyway? When I pressed them on this, they told me that an RTI was the way to go. They argued that the RTI process would lead to an evaluation for special education services if the various interventions turned out to be ineffective. They told me that we would be closer (in terms of days to evaluation and in terms of knowing what to test for) if we did RTI first. It doesn't take a rocket scientist to figure out that they are stalling.

These first two meetings Ren and I went to alone and without a clear understanding of the special education laws for our state. What can I say? We're new to all this and have been figuring it out as we go. In our defense, Sky's school has been awesome in making accommodations and working with him in a variety of ways, and the local hospital has an amazing children's therapy center, so, I was ready to take those good things and go with them since I have heard such bad things about the public school system and special ed services available through the public school system. The more I thought about it, though, the more I realized that we (Sky's family and teachers) need all the support we can get and certainly all the help we are eligible to receive.

So, before today's meeting, I spent hours on the phone talking to parent/family advocates for special education as well as advocates who specialize in autism and child development. I learned some important, yet depressing, things. First, it helps to take as many people to these meetings as possible. Second, I should present everything in writing so that my words are not manipulated or misconstrued. Third, I need to know the law and be ready to wield it. Fourth, every single parent of a kid with special needs has no choice but to be an advocate because without persistent advocacy, nothing at all will happen. It seems crazy to me that we have to fight so hard for support that should be freely given, but we do.

Luckily, my awesome colleague-from-down-the-hall has had experience fighting the public school special ed folks, and she was willing to tag along to our meeting. It turns out that the special ed folks want to use the fact I am Sky's mom against me. Apparently, as a mother, I am too emotionally involved to be able to properly evaluate my son and what he needs. I'm pretty sure it's possible to be a parent and to also have an accurate view of the world around me, but whatever. My awesome colleague-from-down-the-hall was kind enough to restate whatever I said (pointing out I said the same thing but maybe they needed to hear it from a non-parent) and then took Valerie to task on the fact that she was lying about the law.

Valerie was already out of sorts because of the formal request for evaluation that I presented in writing and with great detail, pointing out that the RTI had done nothing as far as addressing the issues that have been present from the beginning. Valerie kept saying she hadn't read the whole thing (since she just received it), but it was clear that it bugged her enough to make her combative throughout the meeting. She told me Sky had control issues and wanted the world to work his way. She told me that he showed no signs of being behind academically, even though his reading assessment indicated he didn't know his letters and his teacher noted that she knew he was more than capable of doing everything on the test. In other words, his autism impacts his behavior and his ability to thrive in the classroom--this is enough to qualify him for evaluation, but Valerie wasn't willing to acknowledge this. Instead, she wanted to make sure that I knew she was the "non-emotionally attached" "God-gifted child specialist" in the room, and that I should listen to her. I found this last point supremely ironic since she was saying this in front of several extremely experienced Catholic elementary school teachers who have in fact demonstrated that they are damn good at what they do (not to mention, they have actually spent time with Sky, unlike Valerie who has never even laid eyes on him).

Fortunately, Valerie couldn't stay for the whole meeting (another common M.O. for the public school special ed folks), so we sent her away with the clear message that we expected an evaluation to be done within the required time frame and that his teachers and principal were on board with this decision. Once Valerie was gone, we could get down to the business of talking about what had and hadn't been working for Sky and figuring out how to get him successfully through the final few weeks of school.

For the record, it has been 9 months since we started the process of trying to get Sky evaluated (for autism) and five months since his diagnosis. And today marks the third meeting since January with someone from the special education department (and the third time that nothing has actually happened). Sigh.



For more of the story see: Is it Okay to Laugh Now?, The Best Offense is a Good Defense