Category Archives: Advocacy
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.
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.
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.
You know what it’s like when you shop for a car and how you dread getting down to the nitty gritty with the salesperson? The haggling… the part where you have to get forceful and threaten to walk away to get the dealership to finally concede and do you a big, fat favor and throw in the wheels to go along with the car?
To me, that’s what negotiations feel like in an IEP meeting. Doesn’t matter how much I prepare. Doesn’t matter how many books, articles or blogs I read or how much Lily’s therapist, Dr. K, helps talk me through it ahead of time. It always sucks. Even the time I had an advocate in the room to help me. Still sucked.
In the end, though, at Lily’s annual IEP review meeting today, after two and a half hours, we came to an agreement with positive feelings all around. But I had such a difficult time getting them to understand why it is so important to scaffold the support of Lily’s Executive Function skills that I wish I had arranged for Dr. K to call into the meeting. Next time.
So… writing. I know a lot of Twice Exceptional students struggle with writing, maybe, like Lily, for several different reasons.
Now in middle school, Lily says she doesn’t turn in a lot of her work on time because she doesn’t have enough time to finish writing it in class. She does well on her tests & quizzes because, most of the time, they require short responses. But her in-class work is a struggle, even when using her netbook. It’s better, definitely, but still hard.
This is actually the 2nd issue, besides organization, that I want to discuss at her IEP review mtg tomorrow… some sort of reduction of repetitive, written work.
Lily has complained to me before, saying that it’s dumb that she has to write out full sentences when she already knows the answer. She said, “ I can say the full sentences out loud if someone asks me, but it’s so hard to write them and I never have time to finish.”
Lily has always had a hard time with writing. We first noticed in 2nd grade, when we discovered that she had a desk stuffed full of unfinished worksheets. Her teachers reported that when Lily was faced with a blank sheet of paper, she would shut down or melt down.
Actually, I first thought something was up in 1st grade, when I made her hand write her classmates names on their Valentine’s cards. It. took. for. ever. And I remember getting frustrated that it was taking her so long. Oh, it kills me to think about it.
Even up through 5th grade, I scribed most of her homework assignments for her and she was unable to even start a writing assignment on her own. At the end of 5th, we got her up to speed on typing and she began using a laptop for most of her written work in class. That did make a big difference, but that was only one part of the problem.
Lily’s writing difficulties are caused by a few issues… Dyslexia, Sensory Processing difficulties, and ADHD/Executive Function issues.
DYSLEXIA-In her learning evaluation, Dr. Paula found that Lily had highly-compensated dyslexia. Lily was a late reader; didn’t really read until the end of 2nd grade, but by 5th she was reading a grade-level ahead. Dr. Paula felt that Lily was such a visual learner that she was using her visual memory to decode words and was using a ‘holistic sight method’ to spell. Her dyslexia was showing up in her difficulty with writing. This amazing article on Stealth Dyslexia, which describes both my daughters, was first written by Brock and Fernette Eide, back in 2005, but I feel that many educators still seem unaware that it exists. Dr. Paula did not think Dyslexia was Lily’s main issue with writing.
SPD/Sensory Processing-Lily’s sensory issues were also interfering with her ability to write. She has decreased fine motor skills and she is left-handed, which makes writing a laborious process and still makes her handwriting very difficult to read. Switching Lily to typing has made writing somewhat easier for her.
ADHD/Executive Function-This was and still is the big doozy. Lily’s executive function deficits interfere with her ability to plan and sequence her thoughts and then, get them down on paper. Visual organizers are supposed to help with that, but it did take some time for Lily to find one that was a good fit for her. She also performs much better if she is taught to plan her writing in a very structured and repetitive way… like a formula that just requires that she plug in her own words. In the beginning though, just one year ago, Lily’s EF was so bottlenecked that she even needed the steps to get ready to write spelled out for her… get a pencil out, get your writing notebook out, etc.
Lily has made great strides this year in 6th grade and is writing much more independently than I thought she would at this stage. I feel like she’s able to plan, initiate and sequence her writing so much better, but it just takes her longer than her classmates and that’s something I want to discuss at our IEP meeting.
Just one final thought on twice exceptional students and writing for now. I know several families and their 2E children who struggle with writing and we all have the same question… Where are all the research-based intervention programs for writing? If dyslexic students often have difficulties with writing too, why is it so hard to find them help?