Saturday, October 31, 2009

Shoelace tying - this approach worked

This worked.

More than coordination or sequencing or geometry, the problem is frustration and discouragement. The key is to drop the skill down to something that is sure to work, then succeed at that, then add another skill. If failure occurs drop back a skill level. When a skill level is secure, move up.
  1. We practiced with a shoe on his leg, and good lace length.
  2. A practice session of ten tie-related acts earned 10 min of screen time (Wii, web, game).
  3. I started out holding one lace, looping the other one over it, and then my son had only to pull the second lace through.
  4. Then we graduated to the bottom tie.
  5. Then I would do the bottom tie and I would hold two loops, positioning one so it had only to be pulled through the other. (For a while I used thread to bind the loops. That was useful as well.)
  6. Then I would hold only one loop.
  7. Then he started tying the loops.
  8. Then he did the entire tie.
  9. Then he started working with the shoe on his lap.
  10. Lastly with the shoe on his foot.
In retrospect, this seems blindingly obvious. In reality we flailed around with this for years; if we'd started out this way we could have succeeded long ago. We'd left this task largely to the therapists that were supposed to know how to teach it, but in the end we had to develop our own curriculum. Not the first time for that.

The training approach has other applications.

PS. I owe this training methodology to Steve Yelon of MSU's OMERAD program. He developed this approach when doing skills teaching for the US Secret Service.

Thursday, October 29, 2009

Courage Center Camps on Facebook

Courage Center has a Facebook page where they're putting events information such as the Dec 19th alumni Holiday Party:

11:00 AM- 4:00 PM Saturday December 19, 2009

• Soup and sandwich luncheon
• Hayrides
• Cookie decorating
• Sledding
• Snowshoeing & Cross county skiing
• Campfire & songs

Wednesday, October 28, 2009

Assistive communication app for the iPhone and iTouch

Gradually, developers are turning the iPhone into an assistive technology device.
Proloquo2Go: Assistive communication for the iPhone and iPod touch

...Proloquo2Go [iTunes Link] is not your usual iPhone/iPod touch app. It turns the mobile device into a full augmentative and alternative communication device ...

...When signing is not available or appropriate, using an AAC device may well be. AAC devices use combinations of symbols, words, sounds and technology to allow people without functional vocal abilities to communicate. The cost of such devices range from around US$3,500 to US$8,500 for something about the size of a Speak and Spell...

...In contrast, the Proloquo2Go app has a price of US$189.99...
At the moment medicare doesn't reimburse for the app and iTouch, since there's a well intended but obsolete single-purpose device rule with medicare. That's likely to change.

It will be interesting to see how the worldwide market will transform these kinds of solutions, both on the iPhone and on Android.

Behavior management and special needs children

I’m putting together a list of posts and references related to the adaptation of animal training methods to the behavior management of special needs humans …

Not much so far, but I’ll add more.

Update 2/18/2010: added many more.

Saturday, October 24, 2009

Unexpected wins and special needs

I’m reasonably good at predicting what two of my children will like and do.

I’m much less accurate at predicting the interests and abilities of my most exceptional son. Sometimes I guess high, but more often I guess low.

When we started playing baseball, I never thought he’d be a competitive and eager ballplayer. His recent soccer playing was completely unexpected. Yes, he is the weakest player on his school team – but he continues to go to practices.

He’s learned more math than I expected he would. I’m glad I listened to the advice of the mother of a girl with Downs syndrome. She told me her daughter got more out of sitting in mainstream history classes than she’d expected.

Today, though, he really surprised me. We’ve had great struggles with him getting off the computer when his earned time has ended. This is where multiple disabilities meet; the limited effectiveness of any punishments or of delayed rewards, frontal lobe dysfunction, ADHD, time perception, limited flexibility, frustration, lock-in, planning issues, and typical adolescent maternal/son power struggles exacerbated by all of his disabilities.

These challenges had led to a rule that both parents had to be present for his computer use; mostly so I could be the enforcer.

A difficult situation, but these challenges are also opportunities. He’s fighting over something he wants to do, but it’s extremely hard for him. It tests his weaknesses. To succeed he must develop new skills and strategies that will work in many life situations. The prize is worth the struggle.

His younger sibs don’t have the dual parent constraint. For my son, this indignity was the last straw. He was ready to deal, and he knew we had a strong position. Nine years of living the Greene approach have made him a seasoned negotiator.

The deal was that he’d use a countdown timer on one of our phones. He had to stop use immediately on the alarm with no parental words at all (it helps this is an iPhone alarm – tasteful and elegant). He had to do this five times in a row. If he succeeded he would revert to having the same privileges as his siblings. I wrote out the rules and five checkboxes and put it on the kitchen wall.

He succeeded on his first run, somehow managing to earn 5 wins in 3 days. (It hadn’t occurred to me that he could take his computer time in shorter segments, thereby shrinking his trial period. I’m intrigued by his intuitive ability to invent strategies like this – without being able to verbalize them.)

So he’s back on the same routine as his sibs – though he’s obligated to forever use the timer. Timer skills, of course, are very helpful for ADHD children and adults. As we’d planned.

Of course I expect he’ll regress. We’ll be back to the struggle again, and he’ll have to earn another five checks in the row. (As I wrote this, however, he completed a 10 minute segment brilliantly – stopping a game in mid-move. I’d have bet $40 he wouldn’t do that.)

Whatever happens now, victory is ours. We now know he can do this, eventually we will win. We, as in he and us.

This afternoon we try mainstream hockey. Another giant challenge. He has many more challenges in his life than I do.

Ok, maybe not many more. Comparable, anyway.

Update 2/18/2010: We still struggle with the computer, but we've definitely made progress. I'd forgotten we used this program (my own disabilities - aging brain) and I might try it again. He did succeed in the hockey program -- really better than I thought he would.

Saturday, October 17, 2009

Accelerated aging in special needs caregivers

The 2009 Nobel Prize in Medicine was given for research on aging, including research on telomere shortening (a marker of accelerated aging) related to stress. When I first read of this in 2004 I learned the research was done on women caring for sick children.

Yes, fellow special needs caregiver, it’s not just your imagination. You are getting older faster.

So what can we do?

Well, first I’ll make the case for why we should invest some of our precious time to longer living. For one thing we know we’re going to be parenting until we check out. We need to stay healthy to do that, so investments in health can be justified by parenting mission as well as selfish priorities.

So you should be sure to … err … uhh …

Actually, we don’t know if there’s anything that can lesson this accelerated aging, and we’re sure there’s no way to reverse it. The best we can do is make some educated guesses …

  • Sleep may be more important than we’ve suspected. So we may need to weight it more highly than even diet or exercise. Don’t sacrifice sleep for exercise – it may be an unwise trade.
  • Don’t smoke. Of course nobody should, but it’s even worse in our situation.
  • Watch your stressing. Sometimes we treat stressing as a badge of honor, but it’s probably bad in itself.
  • Exercise.
  • Keep your social networks. Best of all – exercise with friends.
  • Eat good, eat less.

Exercise and sleep are the problem. They both suck time, and time is one of the things we don’t have. This research doesn’t help make time, but it does give us different priorities.

Oh, and probably stresses us too.

Incidentally, unless Obama’s health care reform passage works, you can expect questions from your health insurer about sick or special needs children. They’ll want to be sure to avoid insuring us …

See also

Understanding why reading is hard

I’ve been fascinated by the evolutionary neurobiology of reading since about 1980, when I was an exchange student at Williams College studying neurobiology. That’s when I realized that human reading was preposterously strange. It was a novel idea at the time, but I didn’t pursue it. Now, thirty years later, reading is finally being recognized as a bizarre human achievement.

I particularly appreciate this essay of Maryanne Wolf, hidden inside a NYT blog posting. Here she is concerned about how reading will develop as we move away from paper  …

Beyond decoding words – Maryanne Wolf (NYT blog Oct 2009)

Maryanne Wolf is the John DiBiaggio Professor in the Eliot-Pearson Department of Child Development at Tufts, and the author of “Proust and the Squid: The Story and Science of the Reading Brain.”

After many years of research on how the human brain learns to read, I came to an unsettlingly simple conclusion: We humans were never born to read. We learn to do so by an extraordinarily ingenuous ability to rearrange our “original parts” — like language and vision, both of which have genetic programs that unfold in fairly orderly fashion within any nurturant environment. Reading isn’t like that.

Each young reader has to fashion an entirely new “reading circuit” afresh every time. There is no one neat circuit just waiting to unfold. This means that the circuit can become more or less developed depending on the particulars of the learner: e.g., instruction, culture, motivation, educational opportunity. [jf: and individual biology, which she bizarrely omits from this list]

Equally interesting, this tabula rasa circuit is shaped by the particular requirements of the writing system: for example, Chinese reading circuits require more visual memory than alphabets. This “open architecture” of the reading circuit makes the young reader’s developing circuit malleable to what the medium (e.g., digital online reading, book, etc) emphasizes.

And that, of course, is the problem at hand. No one really knows the ultimate effects of an immersion in a digital medium on the young developing brain. We do know a great deal, however, about the formation of what we know as the expert reading brain that most of us possess to this point in history.

In brief, this brain learns to access and integrate within 300 milliseconds a vast array of visual, semantic, sound (or phonological), and conceptual processes, which allows us to decode and begin to comprehend a word [1]. At that point, for most of us our circuit is automatic enough to allocate an additional precious 100 to 200 milliseconds to an even more sophisticated set of comprehension processes that allow us to connect the decoded words to inference, analogical reasoning, critical analysis, contextual knowledge, and finally, the apex of reading: our own thoughts that go beyond the text.

This is what Proust called the heart of reading — when we go beyond the author’s wisdom and enter the beginning of our own.

I have no doubt that the new mediums will accomplish many of the goals we have for the reading brain, particularly the motivation to learn to decode, read and experience the knowledge that is available. As a cognitive neuroscientist, however, I believe we need rigorous research about whether the reading circuit of our youngest members will be short-circuited, figuratively and physiologically.

For my greatest concern is that the young brain will never have the time (in milliseconds or in hours or in years) to learn to go deeper into the text after the first decoding, but rather will be pulled by the medium to ever more distracting information, sidebars, and now,perhaps, videos (in the new vooks).

The child’s imagination and children’s nascent sense of probity and introspection are no match for a medium that creates a sense of urgency to get to the next piece of stimulating information. The attention span of children may be one of the main reasons why an immersion in on-screen reading is so engaging, and it may also be why digital reading may ultimately prove antithetical to the long-in-development, reflective nature of the expert reading brain as we know it…

Now if we could just figure out how to actually make some of this knowledge useful in teaching reading to children who struggle with it.

[1] Some very recent breakthroughs have expanded this understanding – The evolutionary wonder of reading – hints from intracranial electrophysiology.

Wednesday, October 07, 2009

Special needs criminals

The average IQ of an inmate is about 87. Since 75 is usually considered mental retardation, there are a lot mentally retarded persons in prisons. Even the average prisoner is borderline retarded.

Prisoners are a special needs population.

Hold that thought. Now, readers with children on the "explosive" spectrum, raise your hand if you have not contemplated your future adult child behind bars. Ahh, as I expected. No hands are raised.

We know some of our children don't respond normally to near term consequences - much less long term consequences. They pretty much only respond to immediate consequences and rewards. The future, for them, is a foreign land.

People studying prisoners, have come to similar conclusions from a different direction ...
Economic View - A Smarter (and Cost-Efficient) Way to Fight Crime -

LAW enforcement policy in the United States rests implicitly on the “rational actor” model of traditional economics, which holds that people take only those actions whose benefits exceed their costs.

This model says that crime will be deterred if the expected punishment is strong enough — a prediction that has not been borne out in practice...

Mark Kleiman, a professor of public policy at the University of California, Los Angeles, says there is a better way. In a new book, “When Brute Force Fails,” he argues that instead of making punishments more severe, the authorities should increase the odds that lawbreakers will be apprehended and punished quickly.

... most criminals are not the dispassionate rational actors who populate standard economic models. They are more like impulsive children, blinded by the temptation of immediate reward and largely untroubled by the possibility of delayed or uncertain punishment.

The evidence suggests that when hardened criminals are reasonably sure that they will be caught and punished swiftly, even mild sanctions deter them. But not even the prospect of severe punishment is effective if offenders think they can get away with their crimes...

... Experimenters have found, for example, that even long-term alcoholics become much less likely to drink when they are required to receive a mild electric shock before drinking. Many of these same people were not deterred by their drinking’s devastating, but delayed, consequences for their careers and marriages...
Mr. Kleinman advocates a particular policing strategy that is effectively designed for a special needs population. The idea is to concentrate resources to increase the probability of capture for a targeted subgroup. The theory is this group will respond to the probability of capture -- perhaps even if the actual punishments are less severe (hence less costly). They will then change their behavior, which frees up resources to target the next sub-group (dynamic policing).

Reducing criminal behaviors is one outcome that police, wardens and parents can all agree on.

In the meantime, and in the hope of avoiding outsourcing grown child housing and care responsibilities to the penitentiary, it's useful to think about that punishment/probability of detection equation when trying to change the behavior of special needs children.

It's not the intensity or duration of the consequences that we should be thinking about, it's ensuring a high probability that any misdemeanors will be rapidly detected. The focus is on vigilance ...

Tuesday, October 06, 2009

This a really bad idea ...

A woman decides to try treating her son's autism with cannabis..

Not surprisingly, since she wrote an article about it, she feels he's doing well.

This is such a bad idea -- though I can understand why a parent might be so desperate they might try it.

Let me name the reasons why you shouldn't consider following along ...
  1. Cannabis is not a placebo. Cannabis is not a "safe" but worthless herbal remedy. Cannabis is big-time pharmacologically active stuff. It has tons of effects. Maybe some of those efffects will help some brains; there's some thought that it accelerates neuronal connection death -- and that could even be therapeutic. Probably other effects will hurt other brains. Maybe it will both hurt and help. Maybe it will help for a while, then really hurt. Nobody knows.
  2. Anyone remember thalidomide? It was supposed to be great for morning sickness, which is why it was given to my Canadian mother. In the US though the FDA didn't approve it. (My mother didn't take it, so I have all my limbs.) I don't think the FDA approves of treating neuroconnectopathies with cannabis.
  3. People running an experiment are famously fabulously lousy judges of how well it works -- even when they're not deeply invested in declaring success.
  4. The placebo effect on aggression can be enormous. Even if the Cannabis was marginally helpful, or somewhat harmful, we should expect a very large placebo effect in this kind of experiment.
  5. Any parent with judgment this bad (or desperation this great) is going to be a very poor scientist. So even if we disregard the experimental design (open) and placebo effect, we should still be very skeptical of this report.
  6. Heck, let's try Scotch. LSD. Heroin. Maybe all three, in combinations. On alternate days. When you're going to experiment on this scale, there are no limits.
Ok, but even if running this radical experiment on your child is a very bad idea, could cannabis play some useful role someday in treating some autism spectrum disorders? Well, in 2004 I wrote of the endocannabinoids ...
[a] .... book I've quite appreciated, written by an adult who'd suffered from severe ADHD/Explosive disorder, emphasized how severe his withdrawal syndrome was from marijuana, and provided anectdotal evidence that for children with ADHD marijuana is a particularly disruptive drug.

Given all of the above, it does not seem to be a great leap to a speculative relationship: Buspirone and endocannabinoids and "Explosive Disorder"/ADHD.

An interesting axis to explore. So I fired up and entered the search terms: endocannabinoid buspirone. Intriguingly that led to the article cited here, a mouse study [found that] Endocannabinoid CB1 disruption did produce a peculiar mouse behavior -- anxiety/withdrawal in unfamiliar settings, aggression/activity in familiar settings. Hmmm. That sounds interesting.

It will be very interesting over the next few years to see how the Buspar, endocannabinoid, CB1, ADHD, PDD, explosive child, EBD, CCBD (complex cognitive behavioral disorder) axis evolves. Look for some interesting work on children with EBD using PET scans and Buspar. We are probably five to ten years from well understood therapies however -- even if this relationship holds up...
Yes, there are lots of reason to be curious about the endocannabinoids -- in animal studies.

Just don't do this on your kids.

Managing net access

Computer misuse isn't a uniquely special needs problem, but problems with abstract concepts of trust and responsibility can make things harder.

After discovering the limits of our supervisory capabilities we're augmenting them per this post ...
Gordon's Tech: Web filters - return to OpenDNS

... I figured we could restrict access to watched machines. Yeah, if we weren't so distracted that might work. The logs, though, tell me that ain't doin' it.

Multiple computers with multiple accounts on each computer doesn't help. Neither does running OS X, there's not much of a market for OS X access management (see: Children Online: Web Filters); they are sold but I can't find any reviews from anyone I trust [1]. There might be a market except Apple bundled Parental Control into the OS.

Oh, wait, why not use Apple's Parental Control features? Because they're $#!$#!$ broken and they've been $&*^%^% broken for years...

Thursday, October 01, 2009

Different minds, Different paths

In most anything to do with thinking, my eldest son and I aren’t in the same league.

For now. In 25 years, if I’m still living, we might be a lot closer.

Even so, every so often, he solves some problem better than I can.

It’s not only the near-savant visual processing abilities that help him find his (frequently) lost brother. Nor his exceptional navigation skills that have corrected my driving since he was about 3 years old. He also has an unusual ability to come up with good solutions to sequencing/routing traveling salesman type problems. That might be why, when he’s in the mood, he’s very good at the game ThinkFun RushHour (traffic jam).

I was reminded of that this morning on the way to work. We were chatting about how we’d manage some family routing issues on the way to work, and, seemingly without effort, he gave me the answer I’d missed.

So my challenge, as ever, is to figure out how he can leverage what he’s good at, while managing the things he can’t do. Being the best he can be …