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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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A 2E Volcano–The Emotion of Writing

I called home to tell the girls I’d be late because I had haircut appointment after work.  Lily was immediately not happy. When I made a joke about how much she must want to see me, she got mad and launched into some angry explanation about some sentences she had to write and she needed me to help her and now she was never going to get done!

When I suggested that she start without me, she got even more upset.  I mentioned to her that these seem like the ‘volcano’ feelings that Dr. K talks about.


I hadn’t seen Lily this upset about writing in awhile.  Up until this year, she would get angry and frustrated almost every time she had to write something. It was torture for everyone involved.  She couldn’t even start writing a sentence by herself and often I scribed for her, helping prompt her along the way.

Now I know that part of this writing difficulty is caused by her Executive Function deficits in planning and task initiation, which seem to be fairly common in people with ADHD or Dyslexia.

Lily has trouble sequencing her thoughts and getting them down on paper. There’s a huge discrepancy between what goes in her brain and what comes out in written expression, which is, of course, frustrating for her.  Although this article on written expression and Executive Function focuses on the bipolar child, there’s some great info in it for all students who struggle with writing.

This year, in 6th grade, Lily has really improved in this area and usually she is able to work on writing assignments by herself.  When I got home tonight though, she kept trying to put off working on her writing.
 
Finally, when I asked a few more questions, she launched into another tirade about a test that she had to take at school and she had to write sentences for her answers and usually she doesn’t have to write the answers and she had to write sentences to support her answers and she got all the answers right but missed points because she didn’t know how/didn’t have time to write the support sentences.

I asked if her frustration with that writing earlier in the day had anything to do with her frustration with writing tonight and she said she thought that it did.

Next thing I know she’s in the office, in the dark, sitting focused at the computer, typing her science analysis answers in a wacky font.  Probably took her 30 minutes total and then she was perfectly happy, at least until she realized she still had to write down her chapter notes for her Lit Circle.

Then came a mini-rant on how difficult it is to write notes while she’s reading.  I reminded her that the teacher said it can just be a few notes she jots on a Post-It after she reads.  So, after giving me a long, detailed verbal description of her chapter in The Golden Fleece, she scribbled down a few notes, which she then typed on the computer using a giant Greek font and titled with Jason’s name translated into its Greek spelling.

I think a lot of time, when faced with a writing assignment, she is just overwhelmed by a wave of emotion–frustration is what she’s used to–and then it usually it subsides quickly.  Just have to keep working on making her aware and giving her the tools to use self-talk to quiet the volcano.

Wanna Buy a Used Car? The Joy of IEP Negotiations

Exhausting…

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.

Executive Dysfunction-Invisible Disability?

Oh boy, talk about intense.  I forced Lily to sit down and go through her backpack with me.  It was worse than I thought and my stomach still feels tight.

The poor child.  She’s been struggling with organization more than I knew.  There were piles of papers in there, some more than a month old, in addition to a wrinkled pink gingham dress, because, of course, why wouldn’t you have a pink gingham dress in your backpack?

We went through each paper, one by one… Is this something you still need? Something you need to turn in? Something you need to finish? Lily started to cry.  She wasn’t sure what the answers were; couldn’t remember and was overwhelmed and confused and mad at herself.  

Through her tears she said that her teachers wouldn’t take her late work.  I asked her why some of the work was unfinished and late.  Sobbing, she says that she doesn’t have time to get it finished in class because she can’t finish writing it in time, some of it she doesn’t understand and needs help and then she’s embarrassed to turn it in late.  I ask her why she doesn’t ask for help and she says because then they’ll single her out for help and she’ll be embarrassed.  

You know if you wear glasses and take them off and try to perform a task… that uncomfortable, off-balance, sort of confused feeling?  I think that must be what it feels like for her.  And it makes me wonder if her medication needs to be adjusted, because she wasn’t having quite such a difficult time at the beginning of the school year.  I’m horrified that I didn’t realize she was having such a hard time.  

I feel like we and the school and actually, anyone she comes in contact with, often think Lily is more capable of independent organization than she really is.  Executive Dysfunction is an invisible disability, especially for a gifted kid.  She’s so bright and clever that sometimes it’s hard to fathom just how impaired her Executive Function is. She doesn’t even seem to realize how much help she really needs.

A few months ago, when Lily and I discussed organization with Dr. K, Lily protested having an organizational system imposed on her, saying that she can do it without help.  Dr. K told her that was fine, but that if it didn’t work out, we would have to come up with another system for her to try.

This week, he told her that I’m going to meet with the school to discuss this and offered her a chance for input.  He told her that his idea would be that she would earn points/rewards by…

*writing her assignments in her planner every day as soon as they are given (checked by teacher)
*writing down any school work she needs to finish at home (checked by teacher)
*reviewing planner with teacher at the end of each day
*review planner with parent after school
*review with parent again after completing homework/mark assignments that need to be turned in the following day
*After turning in assignments in each day, check them off in her planner

In theory, this will begin to become a habit and we’ll be able to scale back some of the support. Her BSP or Behavior Support Plan that works in conjunction with her IEP is the best place to put this organizational system. I’ll give Lily some time to think about it and then see if she has suggestions for the backpack plan I can take to her IEP meeting this week.

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