Category Archives: Advocacy

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.

Spring Break?

This week is Spring Break for the girls, which is sort of like a vacation for me too.  The treadmill slows down a bit.  I don’t have to crack the whip and get Lily out the door to school at the break of dawn.  I don’t have to worry so much about getting homework done every night. But I am still concerned that there’s schoolwork she’s supposed to be working on this week. She doesn’t think she does, but you never know.  Plus, I feel like she must still have makeup work to do from her sick days 2 weeks ago.

Lily stayed home from school 3 days because she was sick.  Of course, I was instantly worried about her falling behind in school.  I emailed her teachers to get her assignments and then I looked in her backpack.  Big mistake.  

Of course, the backpack is stuffed full because she brings EVERYTHING home EVERY night, so she won’t forget anything.  But there’s also a big, messy stack of loose papers in there and that makes me wonder which ones are assignments past due because she forgot to turn them in and which ones are assignments she’s supposed to be working on, but has forgotten about. I need to sit down and go through it with her.  She told me she thought she was caught up, but the online parent portal still has her missing assignments.  Lily doesn’t really seem to know.

That’s one of the hardest part of helping her.  I want to be able to prompt her and support her in remembering until she learns and develops the Executive Function skills to do that herself, but I never really know what’s going on with her school assignments and neither does she. We–Lily, the school and I, have just not been able to come up with a system yet that works for her.  She gets frustrated and discouraged because organizational systems are imposed on her and they don’t seem to work.  She also feels that accepting help  and using tools to support her organization means that people are once again trying to ‘fix’ her.

Of course, she has the same planner that all her classmates have, but it’s blank.  Lily hates writing in it.  I think that’s pretty common with these kinds of kids.  She tries to keep it all in her head.  I try to encourage her to use Google calendar or other digital tools, since I’m guessing that’s what she’ll use eventually, but nothing has worked so far.

It’s hard to scaffold the support of her Executive Functioning at school when we don’t have a system in place.  I suppose it takes trial and error, after all, there are adults who have yet to find an ideal system.  But I think this piece of her twice exceptional school career is going to be huge for her.  

Next week is Lily’s annual IEP review meeting.  I’m supposed to bring my thoughts on her goals for next year.  Organization is at the top of my list.  After her success in 6th grade this year, we know that she’s learning.  Her scores on the acuity tests that predict her performance on state assessment tests increased dramatically this year.  She’s getting very good scores on her quizzes and tests in class.  But she’s still struggling and doing poorly getting assignments turned in.  That’s hard to watch when I know that she has really learned the material.

Next year, the demands on Lily’s Executive Functioning skills are only going to increase and that has me concerned.  She’s going to need more support and scaffolding to be successful and that’s what I hope to address at next week’s IEP meeting.

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, 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.

My Muffin Plan

The muffins are in the oven and that’s not a euphemism, it’s a bribe. Well, not a bribe… just a thoughtful gift for the school Problem Solving Team.  We’re meeting tomorrow about Zoolander and I’m hoping banana-chocolate chip muffins will pave the way for detente between the two sides.

I know it’s supposed to be a lovey-dovey cooperative effort between parents and the school, but almost every meeting I’ve been to like this has been filled with unspoken tensions.

I can’t help but steel myself before these meetings.  I’m on their turf and there are hidden agendas, invisible rules and they all speak a foreign language.  Should I try to be knowledgeable and tough or passive and undemanding?  I know what happens when you’re nice. If you don’t go into those meetings with a clear idea of what your child needs, you ain’t gettin’ nuthin’.  If you don’t ask.  They don’t tell.

It doesn’t help that Zoolander doesn’t qualify for an IEP, a 504 or even the 2nd tier of an RtI. Why?  Because she isn’t sucking enough at school.  And why is she not sucking enough at school?  Because she’s using her cognitive gifts to compensate for her weaknesses.  

That’s the difficulty with Twice Exceptional kids.  It’s hard to get them help because many times, from the outside, they don’t appear to need it and they have to be doing really poorly to get action.  It especially helps if they do really poorly on state assessment tests.  

I still believe that’s the only reason I got real help for Lily, because her scores on the state assessment decreased from 4th to 5th grade.  Well, that and I wrote a few firm emails to heads of departments.  Oh, that AND I paid thousands of dollars to have outside experts assess Lily and provide the school with suggested accommodations and interventions.

Oops, wandered into Bitterville there.  Anywhoooo…..

I’m anxious about tomorrow’s meeting.  I’ll have to post more background on the specifics of Zoolander’s 2E learning issues at another time.  That’s at least a 3-parter, maybe 4.  Don’t wanna miss that!

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