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The Organization Fairy and the IEP

Nearly 3 weeks and the IEP situation has not been resolved.  I have been trying to hold my tongue here (a little bit) during negotiations.  The tension and stress just really suck.  BUT—I will not give up until they agree, in writing, to provide the support and scaffolding Lily needs to develop as a student and a human being.  Because I am NOT going to college with her to check her Student Planner every night.

Received another revised version of the IEP tonight and STILL the language makes it sound like her Executive Function deficits, which are caused by her disability–ADHD, are really only a concern to her parents. In fact, to the rest of the team, it doesn’t seem to be a problem that Lily had 9 missing or late Math assignments & 7 missing or late Language Arts assignments last trimester.  (and those are the ones I didn’t catch) C’mon? What’s the problem?  Her grades are fine. What am I complaining about?  I’m sure her future teachers won’t have a problem with that either, right?

The IEP also seems to suggest that learning those Executive Function skills is completely my daughter’s responsibility. That perhaps some all-seeing, all-knowing, list-making, anal-retentive Student Planner fairy is going to sprinkle sparkly organizational dust from the sky and it will float down upon her sweet 11-year old forehead, soak into her frontal lobe and she will magically, without help, turn in all her assignments, on time.

Maybe the Organizational Fairy could also make these wishes come true:

*After being reminded both verbally and on the board, Lily will understand what to write in her planner every day.

*After being reminded both verbally and on the board, Lily will remember to write her assignments in her planner every day.
*After being reminded both verbally and on the board, Lily will understand when it is time to turn in her assignments, where to turn them in and remember to actually turn them in.
*When Lily is unclear about what she should write in her planner, when an assignment is due, the steps she needs to take to complete an assignment, and what to do if she didn’t turn in her assignment, she will ask an adult for clarification.  

Oh, asking for adult assistance. That’s a big one and pretty much, right now, it doesn’t happen.  But her IEP goals and objectives say it should happen, somehow.  Oh, right… maybe the Fairy again?

Sadly, there is no Organization Fairy who can help break these seemingly simple tasks down into small enough steps for Lily to begin to learn to do it for herself.

I guess if Lily will just buckle down, put her shoulder to wheel, pull herself up by her bootstraps and shape up or ship out, she’ll do just fine next year, won’t she?  ‘Cause I’m sure that’s all it takes.  It’s just a character flaw that can be fixed with just a few natural consequences, right?  Yep. That’ll teach her.

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Me and the 2E/ADHD/IEP

The IEP drama isn’t over.  There is still some back and forth with the school via email that makes me think that we’re not completely on the same page.  

Also, I showed Dr. K a copy of the draft IEP and he had some thoughts.  He did notice that, while the school had come up with some appropriate goals for Lily, they had not documented how they planned to help her accomplish those goals.

I asked about that in the meeting.  They told me that they exchange that information with next year’s team, verbally, in the fall.  Dr. K says the specifics need to be written in the document. So, when they send me the next version of the IEP, he’s going to take a closer look at it before I sign it.

I just realized I’m writing this calmly as if I’m not completely frustrated (paranoid, defensive, emotional, furious) with this whole process.  I ranted to Dr. K about the fact that I don’t feel like people understand the nuances of Executive Function issues, especially with a twice exceptional kid, and I don’t have the psychological language to explain it fully.  He told me that I don’t need to frustrate myself by trying to educate them, just continue to try to get what Lily needs. 

He did, though, give me some ideas on how to refute some of the arguments that people make against helping train a child with EF deficits to organize themselves.

*There are a lot of disorganized students in middle school.  Your child’s problem is not unusual, so why does she need extra help?

Answer:  Because most other middle school students will learn those Executive Function skills naturally as they mature, but a child with EF deficits needs explicit training to learn those skills.  If they are not given the help in middle school, they will be unequipped for the organizational demands of high school.

*Your child’s late assignments are not affecting her grades in a big way, so why is her disorganization such a big deal?

Answer:  Grades are not the whole measure of a child’s progress and growth as a student.

*We put the assignments on the board, online and give verbal reminders.  It is your child’s responsibility to keep track of them and turn them in.  There’s nothing more that we can do. Why don’t you (stop hovering and) let your child suffer the natural consequences of disorganization at school?

Answer:  Our goal is to eventually have the student take complete responsibility for keeping schoolwork organized, but when a child has EF deficits, it’s a gradual process.  Natural consequences will not teach this kind of student specific strategies to stay organized, that’s why support needs scaffolding to gradually reduce the structure until the student is able to form their own habits.

One conclusion I’ve come to through this process, I solemnly swear I will never attend another IEP mtg by myself.  There’s too much at stake and I’m not equipped to pull it off.

Icky Inside

Why do I always feel icky after those meetings at school?  I think it’s because I don’t like the person I have to become to fight for my twice exceptional kids.

Individually, I really like all who attend… teachers, principal, GT rep, Instructional Coach, etc.  I believe that they believe they are trying hard to help Zoolander.  But I also think that if I don’t continually push and push, and sometimes get ugly, Zoolander will not get what she needs to be a successful learner.  That is what I have learned.

What I want to tell them is this… “I’m sorry I sometimes have to be unpleasant in these meetings, I like and respect you all, and I know you work hard, but I don’t trust you anymore and when I say ‘you’, I mean the ‘system’.  I got burned before and my child suffered for it and I’m not going to let it happen again.”

When Lily started having difficulties in school in 2nd grade, I was assured that they were working on it.  They did a full evaluation and started an IEP for her.  As a twice exceptional student she qualified for an IEP because of her ADHD.  I was completely clueless and just signed on the dotted line.  I had no idea I could offer IEP input and even if I had, I wouldn’t have known what to do.  I trusted that they knew what to do.

Lily’s difficulties just got worse, but I was assured that her case was being discussed at higher-levels.  She was visiting an ADHD Coach, but seeing no results.  By 4th grade, Lily’s teacher suggested I get her evaluated privately.  She had a twice exceptional college-aged son who had similar challenges and she had done the same.  That’s when I started to wise-up.

We then spent more than a year gathering info on Lily… with extensive (and expensive) outside testing, evaluations and therapy.  When I was ready to go back to the table with the school to get Lily the help she needed, I was blown away by what hadn’t been done for Lily.

Not one person was looking at the big picture.  The district had done testing, but no one had analyzed it looking for clues.  Her IEP goals, written by the school, were way off-base.  I was struck by the fact that up until now, Lily, herself, had been blamed for her behavior and no one with the proper expertise had bothered to figure out what was actually causing her behavior.

Eventually, it was our outside experts who pieced together the causes of her behavior, which I brought to the school and to the district.  I was then frustrated to discover that no one really knew what to do to help.  I demanded that the district provide the resources to come up with a plan, but in the end, again… it was our money and our outside experts who provided the answers.

So, even after all that, even after trying to educate myself as much as possible using wrightslaw.com, even after using the services of a knowledgeable advocate, I still feel like there is so much unspoken at those meetings.  There are resources that aren’t mentioned, protocols that aren’t followed, procedures that aren’t discussed, tests that aren’t done and unless I know to ask, no one will tell me.  

Makes sense, because if a parent is unaware, why would the district volunteer their limited resources? That’s their biggest advantage in a negotiation—they know and you don’t. Another common tactic that really gets me is the subtle vibe–’we’re calm professionals and you’re a crazy mother who is overreacting and imagining problems and expecting too much.’

So, in conclusion… that’s where I’m coming from at these meetings and that’s why I am forced to be… (nothing personal, of course)… a mistrustful jerkwad.

Dreading the start of middle school

The countdown is on.  The day I’ve been dreading all summer is just around the corner… Lily starts middle school in a week and a half.  I’ve heard that there are other parents who actually look forward to sending their kids back to school.  I can’t imagine that, because for me, the school year is a lot of hard work and with Lily starting middle school, it’s going to be even more stressful.

This morning, I set up a special visit to her new school.  I know Lily needs extra time to learn her way around.  We walked around to all her classrooms and she was okay for awhile, but eventually she got overwhelmed and started to get upset.  She wanted to know exactly how things were going to happen, where they were going to happen, when they were going to happen… starting with getting off the bus–step by step.  I tried to do that and she seemed to calm down.

We still have 6th-grade orientation and back-to-school night before the first day of school, so I’m hoping that helps.  I mean, this is a twice exceptional kid who has months of adjustment every school year and this is at the same elementary school she’s been attending since Kindergarten.  A new school, plus all the added Executive Function demands of middle school… could be a rough transition.

That’s actually an understatement.  I’ve been trying to plan for her middle school transition for more than a year.  I shopped around for public schools, got Lily several evaluations, found her a psychiatrist, a psychologist, taught myself to advocate for her at school using www.wrightslaw.com and the book Wrightslaw:  From Emotions to Advocacy, shopped around for private schools, wrote demanding letters, attended many meetings, helped write a Behavior Support Plan and helped write a comprehensive IEP.  Thousands of hours and dollars later, I feel like we have good support in place for her, but the real test comes in a couple of weeks….

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