Thursday, April 20, 2017

Lesson from Max: Focus on what you can do, not what you can't

I sat on the couch in our living room and stared at the sentence:

He is unable to use an external mouse due to difficulties dissociating finger movements due to abnormal tone.

The sentence was in the "technological literacy" part of the Present Levels of Academic Achievement and Functional Performance (PLAAFP), the first written statement in an Individualized Education Plan (IEP). While it's true that Max would have challenges using a computer mouse due to dexterity issues, he doesn't use a mouse—and I didn't get why it was being mentioned at all.

True, it was 11:20 at night and I was tired. I'd only received the PLAAFP yesterday morning for today's IEP (#fail) while I was working and I'd spent hours after the kids went to sleep reading through the write-ups, looking at the goals and comparing them to last year's. I had many issues with the document, including the lack of constructive comments and the numerous problems raised that had never been mentioned.

But this sentence in particular got to me. For years now, Max has been using an iPad. He is very adept with it. In fact, Max learned to isolate his pointer finger after the iPad came out because he was so motivated by it (here he is back in June 2010, when he first trialed it). There is a whole world out there of adaptive technology. Why point out what Max can't use?

It's Max who's steered my focus to the can-dos. Ever since he was a little guy, he's never dwelled on his disabilities. He has tried his best, made do, found another way, used an adaptive device or sweet-talked someone into doing it for him. At times, he gets frustrated when someone doesn't understand what he is saying and he won't use his speech app. But mostly, he just does his thing.

When he's biking on his adaptive trike, he's loving that and not pining after the scooters and skateboards other teen boys use. When we eat out, he's not annoyed that he can't cut up and eat a steak; he's digging into his mac 'n cheese. When we're at the pool, he leans over, puts his face in the water and cruises around that way. He doesn't care that he can't swim; he's enjoying the pool in his own way.

This is not, of course, a collective observation about people with disabilities. This is about Max, his temperament and his level of awareness. He's content with who he is. He's raised me, as his parent, to feel the same about him to the point where I don't realize what he hasn't been doing until he does it (like last week, when he tended to his own scraped finger).

He is about the cans, not the can'ts.

We could all take a lesson from Max.

To hell with you, computer mouse.

Good luck to me at the IEP!


  1. I can understand why not using a mouse is information needed in the IEP. The most important part of the information is that he uses the iPad like a rock star.

    "Max very proficient at using an iPad for his all of computer work. He has very limited ability to use a mouse due to blah, blah, blah."

    If you want them to continue working on the mouse, then you could add a sentence saying this. Even though I'm not a teacher this would tell me how Max uses technology and if there is anything to be working on (or not). If they aren't working on the mouse use then no need to go into detail. Wasted words.

    Building on our strengths will get us far.

    1. It was just one thing in a spate of "Max can't do blah blah" that I reacted to.... I had a good IEP meeting today. We agreed to expand on his strengths, and to point out what does help and enable Max as much as possible. In the end, I do believe the IEP was meant to give a big-picture overview of Max, including both weaknesses and strength. But for the purposes of transitioning him to h.s., I thought it was especially key to lay out what helps. We'll be revisiting the IEP, and also addressing strategies I can apply at home for some of the issues pointed out in this doc. I definitely had a visceral reaction to seeing so many negatives, plus having to rush through digesting this before the meeting was unfortunate. Ultimately, though, we're lucky that Max has a great team who are willing to go the extra mile to help and support him.

    2. Glad the IEP meeting went well.

      Every time Luke gets a new teacher/para/therapist they can quickly figure out what he CAN'T do. (And being an expert at acting stupid, he does his best to make they think he can't do even more.) By putting in the IEP what a child can do helps the next teacher/para/therapist have high expectations in those areas.

  2. I've spent time in a special Ed classroom where students who could not use a mouse used a touch screen on the computer instead. Which I am sure Max could do as he is so good at the IPad. Just an idea if the need of using a computer comes up. But honestly computer mice are becoming more and more obsolete with IPads and laptops. Good luck at the IEP!

    1. Yes, he can use a touch screen well. My friend today, who has no known disabilities, was laughingly telling me how incapable she is of using a mouse. They can be tricky for anyone!

  3. These days the number of consumer technologies that are available for adaptive approaches is just remarkable. We have understandable speech production, for example, on many devices. It's amazing. And, the Surface is a fully functional computer with a touch screen (that runs all the regular Windows software).

    I remember being shocked, only 15 years ago at how bad prosthetics were, heavy, clunky, mostly cosmetic, and basically unusable by a child, even when built at the best research facilities. And now, kids are printing them, custom made and custom designed, in 3-d print labs, potentially even at schools.

    Max's ability to "do his own thing" and not worry that "people are looking at him" is a tremendous asset and will allow him to take advantage of many opportunities that some children resist, because of their fears of looking different.

    Sometimes, its only a simple change of language that can accentuate the positive while still giving information that a teacher, aide, or assistant might need (like facility with a mouse.

    1. I've also been amazed by the number of advances since Max was born. I am regularly grateful for the iPad, as I'm sure many parents are who had to deal with the previous clunky, hard-to-program augmentative communication devices! And yes! Max's ability to do his own thing is one of his many assets.

  4. Cute poster -- I didn't notice at first that you'd replaced Rosie (since Max has the same coloring of dark hair and pink cheeks).

    And, yes, we could all take a lesson from Max -- there are articles circulating recently about how many people (especially women) vastly overestimate how much people are paying attention to them. This has the negative effect of inhibiting behavior (because, people think everyone is looking at their hair, or t-shirt, or dancing) when in fact everyone is paying attention to themselves. But, it also has the effect of women being too quiet in their contributions to the discussion, because they think their quiet or muttered or soft comments will be listened to because they think people are paying more attention to them than they are, say, in a meeting.

  5. I love this post. I feel like I'm so focused on what my daughter can do that the can'ts dont really creep up like they used to. Preparing myself for the hyperventilating deep breaths in a paper bag moments that are coming soon as we embark on our first IEP meeting next month.

    1. Paige, wishing you the best at the IEP! We've mainly had good ones. It has definitely helped, over the years, to read up on how to approach them.


Thanks for sharing!

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