Word to the wiser: Don't let THEM yell at YOU, either.
I haven't been writing very much lately, and part of the reason why has to do with the fact that I'm working through, in my brain, a number of things I am really not going to ever write about.
But have to break my silence because I'm finally ready to tell you this story:
In March, The Kid's school and I met for an IEP addendum meeting. You review an IEP on an annual basis, and his annual date happened to fall in the midst of last fall's placement fiasco, so I was never satisfied with the goals they set him, or about the information contained within the document in the first place. In fact, when the IEP was written back in October, I had pages of requests for changes, but those changes never happened. I let it slip, for a little while, knowing I could, or rather thinking I could, approach making those changes at a more appropriate time, like when I wasn't spending my time between bed, work and a hospital. So, when The Kid started his current school, I asked that they work toward cleaning up his IEP, and setting goals that fit his needs.
When I got the new IEP, I saw some really great teaching going on. His goals are measurable and real. Like, they changed from 'The Kid will behave better' to something more along the lines of 'he will increase the amount of words he can read.' 'He will gain the ability to work independently during writing.' And after each goal, they wrote really excellent plans to make those goals happen. Because, when you are a kid with an emotional/behavioral disability, or at least a kid like The Kid, your ability to attempt academics are a direct demonstration of how well your behavioral issues are being addressed.
They aren't "easy" goals, but they are attainable, and really, isn't that the "goal" of goals? I think it is. The feedback and the background information the current school wrote described my son, not some monster that was keeping a teacher's day from normalcy.
But (and with me it's always about but, isn't it?), they wrote all of those "new" things without altering or adapting anything that had been written by the old school. So, those errors that were made about The Kid seeing doctor X and taking medication Y on date Q, they were still in this legal document. And, in some cases, when there was no update to add, they left an evaluation in the IEP, unattributed or undated, that described The Kid when he was at the nadir of his insomnia, anxiety, negative drug side effects and what I can only describe as a mixed state of the worst of The Kid's life with bipolar disorder. For example, under the heading of "Present Level of Communicative Functioning," it stated that he had variations in intelligibility, and that his words often run together and were slurred. When I read this in March of 2007, not realizing that it was describing my son of October of 2006, I completely freaked out. The mishmashed speech and slurring, those were side effects of the evil meds he was on for about two weeks last fall. We immediately discontinued those drugs, and those side effects stopped as well. I have grave concerns that an acute reaction to one med he was on for two weeks in the month of September was recorded as his "present level of functioning."
I asked the school to attribute that information to an author, or to please update it. If it were a matter of, "oh, he grew out of that," it would be one issue. But because of the nature of that description, being brief and because it was due to a bad reaction to meds and therefore ultimately anomalaic, it doesn't belong in the IEP. In my opinion.
So, in this March IEP meeting I expressed my concern about these things existing in a legal document with my son's name on it. I thought I made a well reasoned case on why I would like to see some of these things correct, and also made it clear I wasn't trying to remove warts from my son's record, nor was I even trying to take the district to task on our dispute over his old school's IEP violation wherein they made me homeschool him because he wasn't allowed back at their school again. The current school asked me to list the changes I wanted made, and they would see about it. I could tell the lovefest we were having about the great things they had been doing and the strides The Kid were making melted into a pool under the table. Being a therapuetic school, no doubt these folks have seen it all.
I made my proposed changes and sent them in a lovingly worded email to about 6 people at the school district. I heard nothing for over 5 weeks, when I received a call from a district special ed supervisor informing me that none of my changes would be adopted because they were all conjecture, and that would be that.
He told me that I wasn't seeing the forest for the trees, and asked me "how could making all of these changes actually help The Kid?" I gently counted, "I don't really see how having incorrect information in his IEP could help him much, either." I then explained, as if this man needed explaining--and really this is where my big, expensive college edumacation and my fancy words and well, my bitchiness really isn't a helpful tool--that I'm well aware that the goal of therapuetic schools are to prepare a child for reintegration into a more mainstreamed classroom setting is the main goal. Right now, we're looking at a change in placement again for The Kid as soon as second semester next year. Further, I explained, it appears that the habit of the schools in the writing of IEPs are to build upon what is already written (he was evaluated by special ed services in preschool, and all of those items remain in his current IEP), and if that is going to happen, it needs to be right. Even further, think of the worst case scenario. A scandal. A horrible violent outburst. Something we can't even forsee. If his IEP is inaccurate, it hurts us all. Finally, I told him, these things are not conjecture. I can go get my pharmacy records if you'd like, but he was not on med Y prescribed by Dr. X on date Q. It's a inexorable fact. No conjecture.
After that, it turned into screaming, me at him, and he at me. He insisted that I'd missed my chance in changing things in October. I had been told we could address it later. He told me I was SOL. I never called him a name, but boy did I want to. He was not allowing me an inch of power in the writing of my son's IEP. And that was the final word.
***
Today, out of the complete blue, I received in The Kid's backpack a copy of his IEP. Everything written by any previous school had been removed. All that remains is the "new" info. The good stuff, I guess, but I'm still not mollified. Why can't they even meet me half way? If it is a practice of the schools to include a history, have they wiped his out, rather than find one we can both agree on? And what the hell happened to make them decide to do that? I fear they won't call me anymore because I have such a bad reputation with them all.
I throw up my hands. I am not a teacher, and I am not a school administrator. But I am a damn good mom, and a strong advocate for my son. I've been told I'm an important part of this process.
I can't think of another way to end this one, mostly because I don't believe it's over yet. It's perplexing, and counterintuitive to me. I read all over the internet, I grew up in a house with parents as teachers, and I know how frustrated they get when they have parents that don't care. In me, they have a parent that cares so much. I care so much I've started a fucking geeky blog to document how much I care.
My friend and I were laughing on the phone the other day about how if The Kid were not The Kid, but some completely typical child, I'd be such the PTA mom. The school would know me, and I'd do as much as a working parent can do to help her kid and his school. But I have this whole other direction, and I know they hate me. But I don't know how to do it any other way.
8 comments:
You definitely have my sympathy here! I am a special ed teacher. And the parent of a kid on the autism spectrum. I know the laws. And I still don't get satisfaction from my kid's school sometimes. Schools can be the most inflexible, hierarchical institutions in the world!
I applaud you for sticking up for The Kid! Maybe the administrator will eventually learn something from you.
Jesus, Molly! Everytime I think my life is difficult you write a post like this about the shit that you and The Kid have to go through.
What a nightmare! This is like, the most frustrating thing I've ever read!
I think you're such a terrific mom! I also applaud you for challenging them at every turn. They may hate you, but you're doing the absolute best for The Kid!
Shit.
Just knowing the basics about IEPs and special education is asking much for some. I've ran across this much at Cafe Mom and it's obvious that too many parents don't know their rights and how to navigate the system.
When things work, it's easy--when problems arise things change quickly.
A parent full of knowledge and knowing their rights is a dangerous thing when that parent knows that all isn't being done for their child and/or the right way.
I wouldn't worry about ruffling feathers. You didn't get exactly what you wanted, but changes were made.
Often, I don't feel it's deliberate, but taking the easier way because it's less work. It's strange because they were trained for this and yet, they don't always do the best job.
They dropped the ball and expected you to look the other way and you didn't.
I recommend that you start keeping a detailed record on any interaction with them and anything that is said, changed, etc. It's unfortunate, but this dude now sees you as a problem.
It's frustrating and hard, but you know that your right and your not going to back down. This is your son's education and his future depends on every opportunity.
Is anyone there still in your corner or did they change their tune across the board?
Good luck and hang in there.
From the perspective of a teacher who is totally outside the situation, here is what I think might be happening.
Sometimes administrators and teachers think that if they don't have the worst case scenario stuff documented somewhere, they'll be accused of mishandling things, not knowing the child's history, minimizing the child's problems, etc. etc. It might be thought of as trying to get a "heads up" to the people who are going to be working with the child, so that if things go wrong, it isn't "out of the blue". For example, let's say that a kid goes on a new medication and starts showing the side effects that are documented in the history - that's information that might be useful, in that limited sense. Of course that information should really be shared through conversations with the parents and the child's doctors. The IEP is an educational document, not a medical one. It's a fine line.
Taking an aberration or brief crisis and then presenting it as the child's typical level of functioning doesn't give anyone information they can use. The thing is, people are paranoid. They feel they need to put that stuff in so that they can cover themselves, whether it's fair to the child or not. Plus, they don't know the kids 24/7 and they can't really say what's typical. Some people are inclined to believe that if a child has one aggressive incident, he is really aggressive underneath. They fear, "What if he does it again?" And, to add one more factor, they often have the suspicion that parents are in denial about the degree of the child's problems, or are covering for their child by saying he behaves better at home. I don't know if any of that pertains to your situation or not - just in general, there often isn't a lot of trust towards parents on the part of school people. And so communication doesn't happen. They're worried about getting sued, either by the original child's family or by some other child's family if there is an incident at school. It's sad, really. It leads people to act in very jerky ways and ignore the fact that they're supposed to be working in the child's interests.
As for the fact that they erased all of the "old stuff" from the IEP, that's probably a good thing. The IEP is not at ALL the best place for documenting a child's history with behavior, medications, educational methods, and so on. The IEP forms in my state clearly say, "Present Level of Functioning" on every page. Kids should have a much more comprehensive file that contains all of the past information - interviews with parents, rating scales, phone conversations with doctors, medical history, samples of the child's work, and all school reports. The IEP is supposed to focus on the here and now, not document the past.
Lisa, the thing is is that in this case, I am the one trying to think worse case scenario. The IEP as it stood before they deleted everything was poorly written and had information that was purely wrong. Like saying Concerta, an ADHD med, is a drug from the "mood stabilizer" class of drugs. I was correcting their mistakes, in a way. I said this in the blog post, but I didn't try to change a thing that was written about The Kid's troublesome behavior. No one can deny that exists.
I feel you on the distrust of parents from the school, though. And that does no one favors. I DO have a kid that has severe large-setting social impairments, so yes, he's not the same kid at home as he is at school. It makes my blood boil when teachers haven't believed me when I tried to explain this. One school social worker got mad at me one day as I went to pick The Kid up from school, asking me, "Haven't you ever even tried to teach this child limits?"
I'm over any scrutiny or disbelief from teachers on that issue. If they don't want to try to understand our whole story, that's their problem. But that's a whole other blogpost, isn't it...
To Diane's question: I think I have a bad rep, but The Kid's current school recognizes at least that they've got an involved parent, so they can't possibly hate me that much. I just don't think I'm their favorite parent of all time, which in truth, was not something I've ever been gunning for anyway.
Mol, Yikes. It's probably even worse for those of us (you, me and many others) who have family who are teachers or school staff. We DO know what it can be like and how hard it is to be a teacher. We sympathize and honor teachers and schools. So i can see where your predicament is even more challenging.
You are doing the right thing and it does not sound as though you are being a crazy parent, though even if you were, who would blame you? I think people sometimes get all bunged up about changing IEPS because there is such a bureaucracy tied up in them. All these things that must be dotted, crossed, advocates that must be present, etc.; i wonder if it had to do with how much of a pain it is to change an IEP. I am so sorry that you are once again running up against difficult school staff, which clearly affects the Kid's ability to be successful in the long term. I can't even imagine what you are going through. Hang in there..... BTW, you might want to think about calling my sis.
Does it hurt badly to rock so very much?
Aye carumba, Mols. I wish there were something I could do to help.
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