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

• Why should stress accelerate aging?
• Provigil enthusiam: I bet on accelerated aging
• Why I will be flexible even if I am old

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.

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.

In addition to very low IQ, about half all prisoners meet DSM-IV criteria for ADHD.

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 - NYTimes.com

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 ...

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 scholar.google.com 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...

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 …

Mobile phone use with special needs children – more lessons learned

Three months ago, as grade school ended, we let our 12yo son carry a T-Mobile PayGo phone (an old phone we had lying around, unlocked after its AT&T contract ended).

We did the usual thing with posting rules and so on – but they were soon forgotten. In fact, I only remember the rules because I reread my prior post!

So how did it go? Was our son able to handle the complexities of a semi-modern cell phone? (His Nokia is much harder to use, for example, than an iPhone)

It has gone well and he’s done well with the phone. I think having the phone connection to us has been terribly important during his first weeks in Junior High. It’s been a great self esteem boost – one of the few times he can resemble his neurotypical classmates. We had some concerns that he was pestering a former classmate, but we’ve checked into that and it’s good so far. He’s proud of his phone, and careful with it.

On the other hand, he burnt through the T-Mobile minutes pretty fast. I also discovered that, contrary to expectations, I couldn’t get any information from the T-Mobile site on what numbers he was calling. That made me nervous.

After he went through $10 in a week I gave up on the Pay-G plan sand moved his phone to our AT&T family plan ($10/month, $20-$30 or so fee for the new number).

I want him to text as a way to develop some basic communication and writing skills so I signed up for that great 21st century scam – the text plan (200 messages/month, but remember one pays to receive (grrrrrr) as well as send, so this is only about 3 messages sent a day).

I hated to pay for the text messaging, but if it helps him with written language it’s well worth much more. I also opted to try another $5/month service - “Smart Limits for Wireless”. It includes …

Text/IM Limits: I set to 100
Download Limits: I set to zero since he doesn’t have a data plan.
Browsing Limits: Also set to zero
Time of Day Restrictions: none yet
Allowed Numbers: these are numbers one can use even during restricted times. None yet.
Blocked Numbers: Useful if he’s harassing someone
Content Filters

I limited him to about 100 text messages, so with those he receives he might stay under 200. The big thing is the IM limits and the tracking. I’ll report back on how well it works.

I didn’t want to deal with Voice Mail, so I set the phone to forward to a Google Voice number that sends me transcriptions of any messages.

So far this has been a successful experiment. If it continues to go well I may get him a used iPhone with a data plan – so he can carry a much more powerful aide.

Update 10/6/09: Still very successful, and much more essential than I'd expected. Junior High School is somewhat unpredictable, and having a cell phone when soccer is canceled sure helps.

Abercrombie & Fitch humiliation of autistic child - no apology

There's a sickness in the culture of this clothing retailer. Emphases mine.

Abercrombie & Fitch fined in MOA discrimination case | StarTribune.com

A judge ordered retail giant Abercrombie & Fitch to pay $115,000 for discriminating against a 14-year-old autistic customer at its Mall of America store.

The civil penalty, the largest of its kind in at least two years, came four years after store employees refused to let the autistic teen join her older sister in a fitting room because of the clothing chain's anti-shoplifting policy. The store refused to relent even after the sister, and later the girls' mother, explained that the 14-year-old couldn't be alone because of her disability.

The confrontation humiliated the girl, who testified that the incident made her feel like a "misfit."

"She was singled out and required to hear her sister and mother repeatedly ask for accommodations based on her disability, in front of a long line of customers, at a store that markets itself to young people as a purveyor of a particularly desirable 'look' " administrative law judge Kathleen D. Sheehy declared in her ruling.

When several complaints to the company were ignored, the girl's mother, Elizabeth Maxson of Apple Valley, took the case to the Minnesota Department of Human Rights. The investigation encountered fierce resistance from Abercrombie & Fitch, a New Albany, Ohio-based company that posted $3.5 billion in revenues last year. The company even denied that the girl, identified only as M.M. in court documents, had a disability until the first day of the administrative law hearing in April. She was diagnosed as autistic at the age of 2.

In her ruling, Sheehy found that Abercrombie & Fitch violated the Minnesota Human Rights Act and ordered the company to pay the girl $25,000 for mental anguish and suffering. The company also was ordered to pay $25,000 to the state as a civil penalty, $41,069 in attorney's fees, $20,441 to the human rights department for its expenses and $3,753 in other expenses.

Abercrombie & Fitch also was ordered to post signs in its seven Minnesota store explaining that disabled individuals should seek out a sales associate to obtain an exception to the company's policy allowing only one person in the fitting room at a time. The company also must provide an hour of training for all employees in Minnesota who interact with the public to make sure they understand how to help disabled customers.

Abercrombie & Fitch has appealed the fine to the Minnesota Court of Appeals.

Four years. That's how long the Maxson family had to fight this, while Abercrombie's lawyers sat back and waited for them to give up. Even so the fine is pathetically small; for a company this size a meaningful fine would be on the order of $100 million, not $100 thousand.

Even so, Abercrombie and Fitch not only fails to apologize, they appeal the fine. Minnesota clearly needs much bigger fines.

This is the same company that features this diversity statement on their web site:

... Developed and launched a comprehensive training curriculum. It includes e-learning based programs focused on diversity awareness and skill building, as well as, an innovative and provocative approach to education that we call reality-based learning. This approach is unique in that we base the learning on real-life issues that may take place in our store environment and reflects our work culture. The training scene is enacted by actors/inclusion experts during the training program, so that we can generate an interactive dialogue about how to solve relevant management issue...

Of course this statement follows a 2005 class action lawsuit for discrimination. Abercrombie and Fitch paid out $50 million for that one, but it obviously didn't touch their corporate culture.

This is one retailer we can do without. Don't shop there.

Special needs: Mobile communications and surveillance

Posting has been light over the summer. It's been a great summer for us, with all of our children, diverse and neurotypical alike, making progress on different curves.

Now things will pick up again. Our Aspie dude is more assertive about doing his own thing, which means we have to work harder to get him the things he needs but doesn't want. Our complicated guy is entering junior high, which means we have a lot less control and awareness of what's going on.

There's guaranteed turbulence ahead, which should make for more posts.

In the meantime, I've been moving forward on the mobile/messaging strategy I outlined a few months ago ...

Be the Best You can Be: Special needs and mobile phones: Why we're starting young

... We are starting out with a minimal cost phone and a simple pay-as-you-go T-Mobile plan. When the money is spent the phone stops working until we 'refuel'. For now we share a single number and phone, though if Google Voice ever goes live each child will get a lifelong GV number....

Recent events showed that we made the right call on the cell phone. When our eldest ran off into a crowd of 300,000 people or so a combination of his exceptional navigation skills and the "child phone" meant we didn't need to fuss with police searches.

Now, since Google Voice has opened up, I've also gotten him a Google Voice number and email through our Google Apps family domain. Both of these are under our control -- so his voice mails get routed to both parents as do all his incoming email. I also have the ability to track his outgoing emails. He won't have access to the Google Voice or Google email credentials until he's older. The Google Voice number will be his for life.

My next question will be whether to stay with current T-mobile phone or move him to a smart phone (Android or iPhone). It would be very helpful to be able to track his movements by his phone. We can be do that through AT&T's tracking service (designed to track children) on any phone (if we move him to AT&T), through Latitude on an Android phone or Blackberry, and through MobileMe on an iPhone.

Yes, he'll be entering his teen years under close surveillance, though I'm expecting he won't know of it. This guy gives new meaning to the world 'vulnerable'. Over time I hope we all succeed enough that he migrates from surveillance to on-demand-assistance using the same infrastructure.

Neurodiversity moves closer to mainstream

Asperger’s Syndrome, on Screen and in Life is a NYT article about several new movies and books about Asperger's syndrome.

It could be considered a marker in a social movement towards greater acceptance of, and adaptation to, neurodiversity.