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.
It’s Not About the Butter
It’s not just about the butter. I know I tweeted (@hugyourbrain) this morning that I was debating whether to ask Lily to put the butter away; the butter she left open on the kitchen floor. (Yes, the floor. For some reason, she likes to eat breakfast squatting in the kitchen floor, like a third-world peasant. I think it’s because there’s a heating duct under the kitchen tile and it’s warm there.)
Anyway, I was already 30 minutes late to work. The plan was to take the girls to play at a friend’s house on my way to work. Lily’s sister was already showered, dressed and fed. I think I only had to give her instructions twice. But Lily… Oh Lily… the butter on the floor was just the latest in this morning’s string of things left undone. I really think that Lily doesn’t know she’s going to be late until it’s too late. She just seems to have no sense of time passing.
I give her plenty of prompts. We put digital clocks in every room. But she just seems incapable of planning, initiating and sequencing tasks, all typical of a kid with extreme difficulties with Executive Function. She might get ready on time, if I got up an hour earlier and got myself ready so that I could follow her around and help her stay on task and pick up after herself. But it’s all about time… balancing my time.
During the school week, our solution has been to give her ADHD medication as soon as she wakes up, so that it kicks in soon enough to help her focus.
But, this morning, it’s vacation and she took her meds late. So, five minutes before my planned departure time, she’s wrapped in a towel and dripping wet. She’s mad that she has to go downstairs to find clean underwear in a basket of clean clothes. She needs to brush her teeth, but can’t find the toothpaste. She needs to find her hat and put lotion on her face. She’s also searching for her new duct tape wallet that she wants to take to show her friend. She needs a jacket that I know she left in my bathroom floor when she took a shower the night before. She can’t find the cool grey Puma sneakers she wants to wear.
Lily knows that we’re waiting for her and knows that I am frustrated, so then she gets frustrated with herself and the situation starts to escalate.
That’s why I debated mentioning the butter. I did finally ask her to put the butter away and she did do it. But I decided not mention the bath towel she dropped in the floor. Gotta pick the battles… or get someone to invent that frontal lobe robot to follow her around.
In writing this, I realize that some of her searching this morning could have been eliminated by Dr. K’s ADHD mantra–Same Way Every Time. If she put the toothpaste back in the same place every time, she could always find it. That’s why I hang my keys up when I walk in the door. She and I just talked about this and she agreed. I might try to hit that idea a little harder. I think I also need to break out my Smart but Scattered again for some good reminders on supporting kids with EF difficulties.
Ha,ha… my husband just yelled down from our room, asking if I know where our toothpaste is! Maybe Lily knows… or maybe, quite possibly, she doesn’t.
Queen of Jeggings
Reading a post from CaffeinatedAutismMom on the SPDNetwork.com called ‘Meltdowns Happen’, brought back memories of just a few lovely Lily freak outs, most of them because she was unable to control her emotional response to sensory overload. Didn’t realize that until later, but looking back, it’s obvious.
Of course, as an infant, I remember her crying and crying at the slightest noise, or, as a toddler, crying when the trash truck honked its horn, running away from her Daisy Scouts meeting in Kindergarten because it was too chaotic and loud, holding her hands over her ears and shaking during school events in the gymnasium, hating the school bus because it was so loud, getting out of the pool and refusing to participate during swim team tryouts because, again, too loud and chaotic.
We figured out pretty early that Lily was sensitive to noise. But, it wasn’t until 2nd grade or so that we realized she liked soft clothing. In 4th grade, she refused to wear jeans anymore and I had to search out soft pants with an adjustable waist. She had one shirt she loved to wear and I figured out that it was Modal fiber, which IS very soft. In 5th grade, when I asked her why she always pulled a hoodie up over her head, Lily told me that it blocked the bright overhead lights at school, muffled loud sounds and made her feel good. Now that she’s in 6th grade, Lily has become the Queen of Jeggings. They’re perfect for her sensory needs. Soft, skinny, tight and of course, stylish.
Now that she’s 11, Lily’s meltdowns (in public anyway) are few and far between. Occupational Therapy has helped and so has daily movement. Lily’s learned coping skills. She’s learned to advocate for herself and she regulates her emotions better now. Sometimes she’ll remove herself from a situation when she realizes it’s making her uncomfortable. We’re still always on the lookout for triggers though and so are her teachers and the friends and family who know her. Sometimes just warning her that an event might be loud is enough. Now, if she does end up in a loud and chaotic situation, her discomfort usually shows up as irritability or agitation.
This topic of sensory sensitivities also made me think of an interview I did with Jeffrey Freed. He’s an educational therapist and the co-author of the book, ‘Right-Brained Children in a Left-Brained World.’ He’s also what you would call Twice Exceptional. He talks about his sensory issues as an adult and a child.
Brainhugger 