Monthly Archives: April 2011
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.
Brainhugger 