Monday, August 4, 2014
2:05 PM Augmentative and Alternative Communication (AAC), children's rehab, family, Parent-talk, technology 3 comments
Children’s rehab is often focused on improving a person’s ability in a specific area or in achieving functional goals.
The use of “goal” language seems to be directed primarily at children with disabilities. As a kid without a disability, I don't recall a lot of talk about my goals growing up. I didn’t feel external pressure to “reach my potential”—which seems to be the marker for success placed on every child with a disability.
The idea of achieving your potential implies that we all have a fixed amount, a certain size of box, if you will, from which we can draw a limited amount of ability. Some have larger boxes, some have smaller ones, but at some point we can measure or see whether a person has made full use of their “box.” Or can we?
I was thinking about this because as my son gears up for a year of full-time co-op—his last year of high-school—I found myself agonizing over the fact that he still doesn’t have a reliable form of communication. What is holding him back in his co-op is the ability to communicate freely with the public. He has a voice app on his iPad—Proloquo—but he doesn’t like to use it. He would rather gesture or have his signs interpreted by an EA.
His report card noted that he has to start using Proloquo more. That got me wondering whether we should look at a different voice app. And that led straight to hopelessness. Because I’ve looked at all of the devices and spent years trying to find something that works for him. I am sure that full months of my life have been devoted to programming systems that were never adopted long-term.
I keep hoping that Apple will develop a voice app or device that is as intuitive and user-friendly as its other products. However, I’ve been hoping that for more than 15 years. I even began a small campaign of tweets to Apple CEO Tim Cook last year that went unanswered. I think the big computer makers have let our families down in not bringing their expertise to the AAC table.
That said, my son is a young man now, not a small child, so any use of a voice device will depend on it being something that he wants, not something that is thrust on him.
Despite my cynicism, I found myself online looking at videos of children using different voice apps and wondering why my son’s use had never taken off in the same way. It wasn’t for lack of enormous efforts on my part. In my son’s defence, I find them cumbersome and slow and not easily portable. I personally wouldn’t want to use one.
Last week I saw this headline in the New York Times and got a sick feeling in my stomach: The Kids Who Beat Autism. Has autism become an opponent?
The article refers to two small studies that showed that 10 per cent of kids with autism “shed” their symptoms, but there didn’t seem to be any rhyme or reason as to why (they included kids who didn’t receive intensive ABA therapy). “Recovering” from autism is positioned as the “optimal outcome” and we’re made to feel terribly sorry for the families whose kids don't progress.
(Though there is this beautiful final paragraph where a mother of one of the unrecovered shares her thoughts: The idea that Matthew won’t recover no longer pains Jackie. “At some point,” she told me, “I realized he was never going to be normal. He’s his own normal. And I realized Matthew’s autism wasn’t the enemy; it’s what he is. I had to make peace with that. If Matthew was still unhappy, I’d still be fighting. But he’s happy. Frankly, he’s happier than a lot of typically developing kids his age. And we get a lot of joy from him. He’s very cuddly. He gives us endless kisses. I consider all that a victory.”)
Thankfully, the magazine piece was followed by this post in Motherlode called The Kids Who Don’t Beat Autism, by Bad Animals author Joel Yanofsky, who has a teenage son with autism.
Yanofsky notes that when he saw the headline—The Kids Who Beat Autism—“I didn’t want to discover all the things my wife, Cynthia, and I could have done and didn’t. That thought keeps me up enough nights as it is.” I think it's dangerous and wrong when parents are made to feel that they control the outcome of their child’s disability. And we don’t need our kids to beat or stand in opposition to something that is a part of their identity.
Recently I was reading Think Like A Freak, the new book from Steven D. Levitt and Stephen J. Dubner, the authors of Freakonomics. In Think Like A Freak, the economist/journalist duo encourage us to take a new approach to solving problems. What intrigued me was their final chapter—The Upside of Quitting—in which the authors argue that giving up unattainable goals is a smart move.
I wondered how this idea might be helpful to parents of children with disabilities like me.
Levitt and Dubner note that quitting anything is tough because of American homilies like: “A quitter never wins, and a winner never quits.” In Western culture quitting is synonymous with failure, they say. And once you’ve invested heavily in something, it feels counter-intuitive to quit. However, “You cannot solve tomorrow’s problem if you are not willing to abandon today’s dud,” they note.
“Civilization is an aggressive, almost maniacal chronicler of success,” they write. “This is understandable—but might we all be better off if failure carried less of a stigma? Some people think so. They go as far as to celebrate their failures with a party and cake.”
They then recount how scientists in an invention lab at a technology firm test out ideas, with the goal of ‘failing fast and failing cheap,’ when necessary. The head engineer prefers the terms ‘failing well’ or ‘failing smart.’
They also reference a series of small studies by Carsten Wrosch, a psychology professor at Concordia University, that found that people who let go of unattainable goals saw physical and psychological benefits.
“They have, for example, less depressive symptoms, less negative affect over time,” Wrosch is quoted as saying. “They also have lower cortisol levels, and they have lower levels of systemic inflammation, which is a marker of immune functioning. And they develop fewer physical health problems over time.”
Of course Wrosch notes that deciding when a goal is unattainable “is the $1 million question.”
There are all kinds of studies showing that mothers of children with developmental disabilities have higher levels of anxiety, depression and chronic stress, as well as reduced immune function and increased cellular aging, than those raising typical kids. They also have poorer physical health.
I’m just wondering what part our “Anything is possible” and “Just Do It” culture plays in keeping parents trapped in rehab goals for their kids that may not be attainable? I know it won't be a popular idea, but it seems that for many parents “letting go” of a hoped-for, but not practical, outcome could be physically and mentally healing.