Minnesota Online Special Needs Directory

I just found this online directory: Minnesota Online Special Needs Directory: Twin Cities Metro Area. It's referenced by the Wrightslaw Yellow Pages for Kids with Disabilities (MN).

It's published by Jenzi Silverman at the UMN Dept of Educational Psychology. It's very plain -- there's not even notation of last revised date. I don't find the organization terribly useful, it's crying out for an embedded Google search box, but it's the only place I found an (obsolete!) link to the interesting Eagan ProAct agency that works on employment skill development.

Clearly I need to create a custom google search for MN special needs resources and show Jenzi how to embed it in her directory page. More on that soon (I hope).

iPad for special needs

Gordon's Tech: Grandma's iPad - A user guide and review was written for low vision elderly, but there's a substantial intersection between the needs of the elderly and those of special needs kids and adults.

Managing screen time limits - a new tactic has some success

We've had good success with trading time limited computer access for behavioral goals. We've had a problem however when the time is up. It's very hard to stop, especially during a game.

I'm sympathetic, but with this sort of thing our son does better with firm boundaries. On the other hand, this has led to some difficult battles. As the #1 son moves further into adolescence, it's harder for Mom to enforce rules.

Still, this is a battle worth fighting. Tracking time, recognizing a deadline, then overriding the desire to continue are great executive function exercises. It's push-ups for his frontal lobe.

Recently I've had some success with flipping the problem around. As well as punishing him for going past his time limits, I'm rewarding him for finishing early. He gets to rollover unused minutes, and he gets three stickers (8 stickers = 10 minutes computer time) if he finishes before the timer completes*.

This has worked better than expected. We remind him prior to logging him in, and we remind him about about 4 minutes before the end. He's getting good at ending 1 minute early (or a bit less, since he knows we round up. There are times I wonder about how accurate his IQ testing is.)

Eventually, if he continues to succeed, we'll dial back on the reward but he'll always be allowed to rollover unused time.

It's surprisingly hard for us to come up with these judo moves; it's easy to get stuck in a pattern of confrontation.  When they work though, it's satisfying.

* We use a visual timer that has become popular in the special needs population.

Adolescence - continued ...

It would have been nice if our pediatric endocrinologist had been right and we had been wrong. Nice, but unlikely.

So our eldest guy with disabilities both a teen and physiologically adolescent. We've moved into phase II of the "great game" of his life.

It is a good time to review the objectives we've held since studying the most important book every written.

1. Avoid serious irreversible harm to others.
2. Avoid serious irreversible harm to self.
3. Avoid America's well funded special needs residential care program
4. Maximize the cognitive skills that will be most useful to him in work and in life. Reading and social intelligence of course, but also leverage his relative gift for technology use.
5. Maximize his physical health and personal happiness.
6. Find the best possible adult residential arrangement with the most feasible independent living option.
7. Find him employment he enjoys.
8. Set up a support system that can outlive us.

See also

• Violence and the natural history of Autism - so what do we know? (2009)
• Adolescence and beyond

Adolescence and beyond

The years go by.

One SNC (special needs child) is doing very well. So well his teachers want to end his services and his IEP. We think they're premature, so we're negotiating for measurable milestones. If he passes those then we're ready to try the next grade without services.

Teachers and administrators have as much trouble with measurable milestones as, for example, software developers and physicians. Measurement is painful

Another SNC is also doing well in many ways, though we do not expect him to live without services. His written expression has improved greatly thanks to excellent teachers, and perhaps due to his fairly regular texting. He's done so well at texting that we've gone to an unlimited texting family plan. I hate the $360/year cost, but it's cheaper and more effective than paying for a writing tutor or for OT work. Too bad I can't pay for the family texting out of my health flex plan.

We're working through typical adolescent issues. We've had some luck with language modulation by setting up a sticker reward system for a day without any banned words. His siblings quality 100% of the time, my son hates it when they get a column of stickers (computer time or money) and he doesn't. Over the past two months this program has, to date, largely eliminated the paint blistering language issues we had.

I continue to be bemused and surprised by his computer skills. My wife is in the 98th percentile on her medical board exams (she used to be 99th but now practices very part time), but my low IQ son is much more skilled than she on our computers. He has an intuitive grasp of how software works, and delights in finding gaps in Apple's not-entirely-robust parental controls system.

Similarly he shifted fairly easily from a not-too-friendly Nokia phone to a user-hostile Windows Mobile phone. This is a peculiar facility we can use. (I'm inclined to buy him an iPhone. The two drawbacks are that for his demographic iPhones are both uncool (geezer phones) and very quickly stolen (for sale to geezers, presumably).

Our thoughts now look seven years ahead to supported living arrangements and to the possibility of residential occupational training programs. A colleague's son is entering one of the latter programs and I'm researching whether anyone is developing similar programs in Minnesota.

Understanding an unusual mind

One of the pop-psychology characterizations of autism is that it's a "model of mind" problem. Persons with autism, it is said, cannot "model" the minds of others. This is sometimes associated with claims that autistic brains have "mirror neuron" defects, and that "mirror neurons" are the physiological foundation for "model of mind" functions.

I call this "pop psychology" because it's very hard to test this class of theory. We simply don't know enough about how the brain works. My own personal speculation is that brain assembly is always problematic, and in the micro-evolutionary process of adapting brain infrastructure to "reality" various subsystems are repurposed (sacrificed) -- including those involved in modeling other brains.

Whatever the eventual utility of the "model of mind" theory, I find it useful to create my own model of my son's mind (actually not just one son's mind, but I'm simplifying here). It's a very different mind from my own, so I have to be thoughtful about how I model it. I can't use my own mind as a template for how his works. He has very different ways of "making decisions"; he has different values, different needs.

Creating a model of his mind is an iterative process. I make assumptions, test to failure, and revise. He changes too, and I have to revise my thinking. In this I'm guided by my three top special needs references:

1. 3 Steps to Yes: The Gentle Art of Getting Your way (Gene Bedell) - particularly important for the adolescent phase of life
2. Greene - The Explosive Child
3. Training exotic animals - a short NYT article - see also Kazdin
4. Be the Best You can Be: Reading about autism and ADHD - our personal favorites

My current model of his mind might be useful to those who need to create their own models of different minds. Here are the key aspects and some working implications of them:

1. He needs to know where he is in time. If he doesn't know, he becomes very anxious. He needs to know the detailed schedule for the day, and he needs to know the upcoming week to months schedule in less detail. It has been helpful to put paper calendars up with the high level timeline, and to give him a Google Calendar account that emails him daily agendas and sends appointment reminders to his phone.
2. He needs to know where he is in space. He becomes agitated in environments where he is not confident of his navigational ability (example: forest trails). GPS is our friend, since with it I can demonstrate good navigational ability. We work with maps as well. In new areas, I try to do extend familiar ground rather than introduce entirely new routes.
3. He is not strongly motivated by the feelings or opinions of others. He feels some need to please selected persons, but this is a small fraction of the motivation felt by neurotypical children. This is a significant challenge.
4. He doesn't like to see his siblings, or even strangers, upset. He can be quite sympathetic. This seems contradictory to #3, but if the upsetting force is him he's more likely to be agitated than sympathetic. Similarly his family is extremely important to him, but that doesn't necessarily change his behaviors.
5. He is motivated by near term rewards where the rewards are experiences he likes (treats, computer time, his movie pick, etc).
6. He is not motivated by money. Money tends to bother him, he feels compelled to spend it immediately.
7. He very often feels aggrieved and badly done by in comparison to his siblings. He doesn't easily translate relatively privilege limitations or time outs to his actions. This seems partly a cause and effect problem.
8. He is currently unable to understand the concepts of "trust" and "reputation". He does not understand that people will predict his likely future actions based on his past actions. This is a significant challenge but I think he can learn this. It is an educational focus.

The more I can model his mind, the better I can discover levers that can change his behavior. So I keep testing my model, and refining it.

Suspect with little evidence: The action of psych meds on injured brains is unpredictable

Another in a series of things I suspect but cannot prove ...

I suspect that the actions of psychiatric meds on injured brains cannot be predicted.

If this were true, it would not be surprising. It's hard to predict how psych meds affect even intact brains. In the injured brains of autism, mental retardation, and (presumably) schizophrenia we expect to find unusual neurotransmitter distributions, injured connections with recovery bypass routes, and areas of atypically high and low activity corresponding to injury and compensation.

If this were true, it would not mean we should avoid these meds. It would mean that we should look for unexpected side-effects, and perhaps be cautious about how we interpret response and failure. It would also mean that medications might be unexpectedly effective in atypical contexts.

Anyone know of any research on this? I doubt any research exists, there's unlikely to be funding for it.

iPad for accessibility – and special needs?

Josh de Lioncourt has written a review of iPad use for visually impaired persons. He’s pretty positive, though reading between the lines I’m guessing version iPadOS 4.1 will be much better (4.0 is due out this fall, I expect 4.1 @ Feb). It does seem like Apple turned a corner with the 3GS iPhone; previously they’d taken a big step backwards with the Classic to OS X transition.

An essential feature for visually impaired persons is VoiceOver, Apple’s robust screen reader. These same technologies are also very helpful for people who struggle to read. Voice commands help those who struggle to write, and predictive text entry helps students who have trouble typing.

The same features that make the iPad accessible to a large number of Americans who don’t use computers well also make it interesting to the special needs community. It is relatively simple to use, very easy to maintain, and much more resistant to virus infection than traditional computing devices.

The next generation iPad will almost certainly support video conferencing (that’s far more likely than adding a camera). There are many uses of that kind of technology in providing support to special needs teens and adults.

It’s a new world indeed.

Fortune

My daughter leaves Zen Shorts out each night for her dolls to read.

One of the parables retold is about fortune. This moment's fortune may be the future's misfortune; this moment's misfortune may be tomorrow's gift.

Yesterday we came within an inch of life shattering tragedy. There was an unlucky accident born of special needs adolescence.

Unlucky?

The cost was small compared to what might have been. Lives have changed, judgments have been revised. Yesterday's future is gone, today's future is new.

Lucky?

You never know.

Persuasion, adolescence, and the joys of prison life

Low IQ special needs adolescence does not come as a "thief in the night". It comes as a ton of bricks.

Behavioral management, which was never terribly effective, has become even less effective. We may still have a "paradoxical permission" effect, whereby when we give permission for an annoying behavior it becomes less attractive. I'm not sure we have even that however.

Medications are still available, but of course side-effects may be less tolerated.

Which is why I'm turning, with a measure of desperation, to my favorite sales book: Three Steps to Yes: The Gentle Art of Getting Your Way by Gene Bidell. I hope I can use some of Bidell's techniques to change my son's choices.

Bidell emphasizes understanding your Prospect's recognized and unrecognized needs and aversions, then figuring ways to meet them to get the sale. The Prospect "needs to win", for example, so find a way they can win and you can lose -- while still getting the Sale.

Understanding my son's world is a real challenge. He combines the limited knowledge of an early teen with a limited capability to understand and assimilate new knowledge.

I think, for example, that I erred by describing prison as the outcome of particularly poor choices. In my son's mind, I now realize, prison means no school, association with the police and K9 dogs he loves, comforting concrete instead of disturbing nature, agreeable routines, few challenges, plain meals, lots of television, regular exercise, no frightening choices, no concerns about employment, and congenial like minded peers.

In his mind, prison is not a bad thing, it's a bit heavenly. The worst bit is that in some ways he's quite right. He might actually find a well run low security prison more congenial than the alternatives.

So I need to persuade him that there are better options than prison (even if I'm not entirely sure there are - but that's a different story). Juvenile detention, for example, does include math class. It doesn't provide much police contact, and there are no K9 dogs. Most of all, there are no girls and his companions may not be very friendly.

At the same time I need to come up with a better future alternative for him to work towards - and I need to come up with it very quickly.

Any ideas?

Update: In our community the local police are happy to enter a special needs person into their database with a special "tag" including disability and contact information.

Update 6/26/2010: UK study on low IQ prison population.