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Generalizing Acceptance

  • Posted on March 18, 2013 at 10:00 AM

Willy came out of nowhere and said, “I feel bad about Stephen Hawking. He can’t walk or even move his mouth.”

Wow, where did this come from!?! I sat Willy down and asked why he felt bad for Stephen Hawking.

“Well, Stephen Hawking is very smart, but he can’t move. I wish there was a way for me to help him. But he’s already dead.”

(Later, in trying to confirm that statement, I discovered that Stephen Hawking was the victim of a death hoax. So, he’s not dead, but there’s still nothing Willy can do to help him.)

I said, “So, you pity Stephen Hawking because he’s disabled, is that right?”

“Yeah, I guess so.”

For the last few years, Willy and I have been talking about disability. In particular, we’ve talked about how Willy is disabled, but that being disabled doesn’t mean what many people think it means. He understands this as far as this idea applies to him, but this is the first time I’ve faced clear evidence that he has not yet learned to generalize the idea to others.

So, I said, “Willy, do you want people to feel bad for you because you’ve got your brain instead of someone else’s?”

“Well, no.”

“But you feel bad because Stephen Hawking can’t move.”

“Yeah.”

“Do you feel bad because Alex can’t talk?”

“Yeah, I do, because that’s hard.”

“So, you don’t want people who are more ‘abled’ than you are to feel bad for you, but you feel bad for those who are more ‘disabled’ than you are?”

Willy said, “yeah” again, but his voice dropped slightly in pitch. If he was familiar with the phrase, he might have said, “Well, when you put it that way…” Instead, he sat there thinking silently to himself.

“Do you see what I’m getting at?”

Willy shook his head. “Not yet.”

“Maybe instead of feeling bad that Stephen Hawking can’t move and that Alex can’t talk, you should be glad for what they can do. Even though Stephen Hawking can’t move, he’s really, really smart—”

“Yeah,” Willy said, “he’s almost as smart as me!”

I laughed, “Well, actually buddy, he’s probably a lot smarter than you. He’s certainly smarter than me. He’s smarter than Daddy. He’s smarter than anyone I know. So, he’s probably smarter than you, too, because he’s really, really smart. And so, even though Stephen Hawking can’t move, he can think really, really good, better than lots and lots of people. So, instead of feeling bad that Stephen Hawking can’t move, maybe you should feel glad that Stephen Hawking can think so well. And maybe instead of feeling bad that Alex can’t talk, maybe you should feel glad that Alex is so funny, because Alex is really funny, isn’t he?”

Willy thought about this and nodded, “Yeah, you’re right. Alex is funny and Stephen Hawking is smart.”

“So, instead of thinking about what people can’t do, we can think about what people can do. Instead of feeling bad for what they can’t do, we can value them for what they can do. Make sense?”

“Yeah,” Willy said, “I like that. That works.”

As Willy got up to walk away, I couldn’t help but add, “Besides, if I were to feel bad for Stephen Hawking about anything, I’d feel bad that he doesn’t know God.”

Willy’s mouth dropped open. “He doesn’t!?!”

I shrugged, “Nope.”

And then, just to add a twist, Willy said, “L-O-L.”

I bit my tongue to keep from launching into another futile lecture about the usage of “lol” and what it really means. For the life of me, I can’t convince Willy that it is NOT the equivalent of “wow.”

Success Can Be Its Own Adversity

  • Posted on June 11, 2012 at 8:00 AM

One of the common threads in discussing autism, Asperger’s and associated neurological differences is the challenge of discrimination and the lack of opportunity.  One of the threads that seems less common, if not entirely ignored, is the adversity of success.

With success brings the expectation—often overwhelming—to perform successfully.  This is emboldening when that performance is accessible, but it can be extremely disheartening when that success is out of reach.  As many of us know, ability is variable.  Some days we can do more than we can on most days.  Some days we can do less that we can on most days.  What we can do any given day, even a normal day, isn’t the same from day to day.  Add the stress to perform and that variability can increase exponentially.  Now this is, to a degree, true for everyone.  With autism, this variance is heightened and enunciated in a way that seems dramatic, even odd.  It makes the normal level of unpredictability seem predictable in comparison.

What makes this especially unfortunate is the days that we must perform are not always the days that we can perform.  I see this in my children and in myself.  These are the days when our successes come back to bite us.  We are expected to do, so we try, but we can’t and the frustration mounts, making it even harder to do and even harder to explain why we can’t, because everyone already knows we can or, rather, that we could without seeing the difference between the two.

How do you deal with success?  How do your children deal with success?  Do you give yourself or your children permission not to succeed even when you know, on another day, at another time you or your children could do what they can’t do at the moment?  It’s hard to do so, but it’s necessary.  Some days we can.  Some days we can’t.  Even when we usually can, there are still some days when we simply can’t, try as we might, as much as we want to, it’s just simply inevitably and unalterably out of reach.

Special Education: Ability vs. Behavior

  • Posted on April 23, 2012 at 8:00 AM

Recently, I’ve been talking with someone who has a different perspective when it comes to assessing what children with special needs can do.  In the context of what we’re doing and why we’re talking, those differences are part of the value.  By sharing them, explaining them, and discussing those differences in a safe, neutral environment, the hope is that we will be able to broaden each other’s understanding and, eventually, share those insights with others.

 As a parent, I concentrate on what my kids can do and why they can or cannot do something in a particular environment.  If something isn’t going well, I quickly assess the what and the how, and then I jump to the why.  My thinking is that if we understand why, we can address the situation in a way that has the desired results.  For example, it is very frustrating for me that we don’t know why Alex doesn’t talk.  Is it because of the autism?  Is it because of the brain cyst?  Is it because of something else that we know about, something that has importance we’ve failed to recognize?  Or it is because of something that we don’t even know about yet?  My thinking is that if we understood the why, then we might be able to change the circumstances surrounding the what to address the why, whether that would be triggering latent speech abilities or finding a successful alternative communication system.

The person with whom I’ve been speaking concentrates more on the what then the why.  The why is important, but in his mind understanding the what and the where—the behaviors and when and where they occur—thoroughly is an important step that shouldn’t be rushed.  A quick assessment isn’t enough, because the what and the where (as I understand what he was saying) help to reveal the why.

He concentrates on what kids actually do, and where they do it.  To him, starting where they’re at is about what they do.  But what if where they’re at and what they do doesn’t reflect what they can do, what they could be doing if we could address the why?

Alex can talk in clear sentences, at significant length, in those rare moments where—whatever it is that makes those moments possible.  The words are there.  I’ve heard them.  I’ve heard him speak paragraphs of words, structured in meaningful and appropriate sentences, with clear diction.  The behavior does exist, but it’s not really his behavior since this has happened maybe four times in the last five years.  Most of the time Alex’s vocalizations just come out as single, repeated syllables or his words—maybe a few times a day—come out as garbled fragments that sound as if they’ve been distorted through some audio equipment.  Occasionally, he’ll sing snippets of song lyrics which may or may not come out more clearly.

The ability to speak is there.  But there is some sort of interference.  (I think I’d love to sit down with Sam and see what insights he might be able to offer.)  The interference is the why, and if we could alleviate it, then we could have more of the what.  But the interference, in a way, is also the what.  And then it all gets tangled in my mind and I don’t know where to go from here.

From a strictly scholastic perspective, I get why knowing what Alex does (the behaviors themselves) is important.  But I still think knowing what he can do, what he could do more of if only…  That’s important too.

Executive Functioning in High-Functioning Autism

  • Posted on December 21, 2011 at 8:00 AM

Gavin recently wrote about executive functioning. After reading his post, I couldn’t help but think that much of the focus on executive functioning is in relation to high-functioning (or low-visibility) autistics. Parents of low-functioning (or high-visibility) autistics tend to dismiss or downplay the disabling aspects of autism among those with high-functioning or low-visibility autism; sometimes, it’s these individuals themselves who insist autism isn’t a disability at all. Partly in reaction to this, high-functioning or low-visibility autistics tend to focus on the disabling aspects of executive functioning differences. So, in reaction to Gavin’s post and the greater dialogue, I wanted to take a moment to consider executive functioning as it manifests in my household of three boys with autism who are at very different functioning levels. Due to the length of the original post, this will be a two-parter.

I’m going to start with Willy. For those who aren’t regular readers, here’s a brief recap: When Willy was first diagnosed he displayed classic regressive symptoms of autism, meaning that he developed more-or-less normally and then lost many functioning abilities, including the ability to communicate effectively. In retrospect, there were warning signs regarding his development prior to this regression, but as we were not familiar with autism and autism awareness had not progressed to its current levels, these warning signs were delegated to the “wait and see” category of concerns. When Willy started to regress, these concerns took on new meaning and the search for an explanation began. Willy’s resulting diagnosis is autism. At the time of his diagnosis, his autism was considered severe and institutionalization was recommended. Willy turns thirteen today, so this wasn’t all that long ago. With the help of several therapies, and due to Willy’s own development (which is beyond our control, obviously), Willy has regained the skills he lost. He is now considered fairly high-functioning, but a great deal of his functioning ability is due to the adaptations and accommodations we’ve been able to make for him.

On the surface of things, Willy appears very high-functioning. He talks, attends classes with his peers, pursues multiple interests, uses his imagination, and tells stories. He has friends. He’s well-liked in school. On the surface of things, executive functioning skills seem to be his biggest weakness. Getting through his day requires quite a bit of coaching in regards to scheduling his day and scheduling the different steps in each task. Getting his homework done is a hard-won achievement, which heavily relies on a physical schedule of assignments and a “learning lab” which is kind of like study hall, except with extra help. On the surface of things, all the work we put into building and maintaining his executive functioning skills helps us compensate for his disability to the point that his disability often seems invisible to us.

But that’s only the surface of things. As high-functioning as Willy is, when you put him next to his typically developing peers, especially those at different age levels, you can see delays in reasoning skills development, social skills development, and language skills development; and, we’re back to the pervasive developmental disorder. In time, Willy’s reasoning, social and language skills might catch up. They might. But there will always be differences in these areas. Willy will always think, socialize, and speak/write differently. Executive functioning is a bit tricky. It seems less emphasis is put on developing executive functioning skills, i.e. translating these skills into a do-it-yourself set of abilities that Willy can understand, and more emphasis is put on providing him with coping mechanisms, support, and resources to compensate for this disability.

There are two basic take-away lessons in this:

1) Willy’s “invisible” disability becomes quite visible if you compare him to his typically developing peers. The invisibility is most apparent when comparing him to his brothers, who have fewer functioning skills. Furthermore, his “invisible” disability becomes very visible if you take away the supports and accommodations that make this level of functioning possible for him. Thus, it would be ridiculous to claim that Willy isn’t disabled simply because Alex and Ben are more disabled.

2) How we approach executive functioning seems to assume that it is an ability (or disability) and not a set of skills that can be developed and internalized, with appropriate adjustments. The general approach seems to be one of accommodation and support; whereas, the approach to Willy’s language and social development seems to be one of skill development and support. I’d be interested to know how wide-spread this assumption is and why it is made.

Are executive functioning differences a matter of life-long disability? Or is it that we have yet to discover and apply in the general autistic population the proper approach(es) to building skills and providing support until those skills are self-sustaining?