Tag Archives: executive function

On Our Mark

Okay. I think we’re ready now. The supplies have been purchased, the backpacks have been packed, the fees have been paid, the papers filled out. The anxiety has set in.

Yes, there’s nothing like the start of a new school year to ramp up my stress level. I know – everybody’s busy running around, getting the ducks in a row, the usual for those of us with kids in school. For me, it’s not really about that. It’s that year after year my PTSD kicks in every time the phone rings. And I’m referring, of course, to the years and years of teachers and school administrators calling me at work to tell me that my son is having behavioral issues and I must leave work and come to get him. The phone rings and I instantly tense up. In recent years, with caller ID, the tensing doubles when I see “school district” on the screen. God help me, it’s a horrible feeling. It’s an alarm, a pre-panic, a dread. And it used to happen on a regular basis, but especially at the beginning of the school year.

Today, the first day of tenth grade (!), there were no calls. That doesn’t mean that there won’t be any later, I know better than that. But it’s a good start, and I’m grateful for it. Here’s what else I’m grateful for: a very positive IEP meeting last week. Some of you might recall how the last IEP meeting went, and how much I had prepared for it. I prepared for this one just as much because it was just as important. In fact, in some ways, this one was more important. The meeting in May was about getting the school district to agree that Neil’s academic needs, since he could not work independently, would be better met in a specialized setting. They didn’t agree, but they didn’t offer any alternatives.

So I came up with an alternative on my own. Over the summer, I researched various programs in public high schools with good special education departments. I thought, what are they doing that we could emulate? I printed out course descriptions from some of those schools that included specialized classes designed for students with autism to teach them the executive function skills they need to be able to work independently, which is exactly what Neil needs. I also researched various books written for educators on how to teach executive function skills to students like Neil, and I printed out descriptions of the books off of Amazon. I went to the IEP meeting, print-outs in hand, and proposed that the school create a weekly class on executive function skills for Neil and any other students who would benefit from it (and of course there are other students who would, even if they do not have an ASD).

And they said yes. They said yes not only to meeting my son’s needs, but to setting the precedent for future ASD kids at that school (and, as we know, there will be more). They said yes to being an even better school. They said yes to the other kids who really need some extra help with learning how to be a good student, autistic or not, but whose parents may not lobby as hard as I do. They said yes.

And this mom is feeling a lot less anxiety, a lot less dread. In fact, I’m feeling pretty excited about this school year. I’ll even try not to cringe when the phone rings.

Looking Not-So-Far Ahead

A quick look at my Amazon Wish List conveys what’s been on my mind lately: my son’s future. I mean, it’s obvious when you look at the titles –

Now that Neil is fifteen (and a half), we really need to get going on his transitioning plan. But how? How do you do plan for adulthood when your high schooler has the emotional maturity of a ten-year-old? He talks about wanting to go to college, which is great. But how can I realistically plan for that when he can’t handle the modified workload of his freshman year of high school?

Yes, Neil can progress. He has proven that over the years. He is handling things now that I would have never thought possible, even three years ago. So it is within the realm of possibility that three years from now, he could be going through the admissions process for college. But as much as I believe in my son, that’s a big maybe.

You see, Neil lacks executive function skills. And I don’t just mean that it’s challenging for him. I mean that they’re pretty much nonexistent. This is why he requires one-on-one assistance in his classes and two study period pull-outs every day to do his regular classwork (with constant assistance). Every advancement he’s made in Boy Scouts is because an adult (usually me) has walked him through it, outlined the work for him, and kept him on track. He is unable to do it himself.

And so, I worry if college is a realistic goal for Neil. He is certainly intelligent – he’s just not able to do the work, nor is he motivated to. And college is a lot of work. There are no IEPs in college, no educational assistants hovering over him to keep him focused. There’s no modified curriculum. I know that there are programs to help people on the autism spectrum navigate college as far as housing and living independently. But they don’t write the students’ papers. They don’t do the work for them. That’s what executive function is for. Either you have it or you don’t.

I suppose that it’s something he could be taught, but that’s one of the things I tried to do when I homeschooled him for a year and a half. I taught him how to do math problems step-by-step, how to write essays, organize his thoughts, and outline. And it didn’t take. I don’t think his brain functions that way. Perhaps he wasn’t ready for it at the time, but it wasn’t that long ago, and at this point, time is of the essence.

All I’ve ever wanted for my children was for them to feel loved and to lead happy, fulfilling lives. I know that doesn’t have to involve college, but Neil’s dream of being an astronaut does. And there are times when I wonder if all the years of therapy got him to a really good point, but it’s not good enough. We got him to the point where he can communicate verbally and go to restaurants and grocery stores and interact with people and make a grilled cheese sandwich and ride his bike to school and back independently, but he can’t work independently. And while I am so happy and proud and grateful that he is able to do all those things that were impossible for years, that glaring difficulty remains. Once more with feeling: he can’t work independently. And I don’t know what that means for his future.

Executive Compromise

A short conversation with Nigel last night –

Me: Nigel, you really need to clean up your room. I can’t even see the floor in there.

Nigel: The floor is purposeless.

Me: No, it is not ‘purposeless.’ The floor is for walking on to get across the room.

Nigel: Walking is purposeless.

Me: You’re not making sense. Of course walking has a purpose.

Nigel: Well, it’s too hard to clean my room.

And so, the room-cleaning saga continues. Some of you may recall the ideas I came up with in the past to address this issue, such as listing specific steps to clean the room, making chore charts, using positive and negative reinforcement, and trying to inject humor into the situation. All of those things worked a few times; none of them work now. With five full inches of trash, clothing, books, DVDs, papers, and Lego strewn across his entire floor, I had to dig deeper to come up with a solution.

I remembered Mama Mara’s post from a few months ago discussing the concept of executive control and her son’s room, and I used that to fuel my search. I searched for more about executive control/function, and specifically, cleaning up rooms. I found a video on Autism Children Now that was quite helpful. The subject, a woman with Asperger’s, discusses the fact that ASD individuals have a different perception of what is organized. It reminded me of the following exchange I overheard between Nigel and Aidan a few years ago:

Aidan: You’re using my toothbrush, Nigel! Mine’s the one with the stickers on it.

Nigel: Sorry, my brain is not good with memorizing things like that.

Aidan: That’s because you’re not organized!

The Aspergian woman in the video maintained that when it appears that autistic people’s living areas are disorganized, the spaces aren’t disorganized to them. They know where everything is. And while I am sure that this is true in many cases, unfortunately it’s not with Nigel. He doesn’t know where everything is. Things get lost in his room, swallowed up. Last weekend he had an overnight Scout camping trip, and while packing he could not find his flashlight, compass, Swiss Army knife, or even any socks, all of which were buried. We had to go out and buy these things at the last minute, which did not make me happy. I could dock his allowance for these items, but that really doesn’t help him to learn how to be more organized.

What to do? The woman in the video made an important point: compromise is the key word. Compromise on organization, and do not be abstract in your instructions. I can’t just say, “Nigel, you need to organize your room better.” What I can do is compromise on the things that I want him to have organized. For example, I can have him agree to the following:

  • Daily trash pick-up, every evening at the same time
  • Socks go directly in laundry bin when taken off
  • Scout items or other easily lost items put in a designated spot

I would love to have him clean his room thoroughly every week, but I know this is not possible for him. I would love to have all of his clothes in his dresser, closet, or in the laundry instead of on the floor, the books and DVDs on the actual shelves that are set up for them, the papers in stacks or files, and everything organized the way the rest of my house is. But there’s no compromise in that. With the 3-step list, he won’t feel overwhelmed, and I don’t have to hear “I don’t have any socks” or “I can’t find my flashlight/compass/scissors/wallet” anymore. And, if I’m really lucky, I won’t have to wade through five inches of trash to tuck him in bed every night.