Special needs adolescence: Yes, Virginia, there is porn on Facebook. How to torch an account.

Young males have been known to view pornography on the Internet. Having a cognitive disability does not necessarily change this behavior. Some kinds of disability, however, mean that discretion can be weak, and boundaries between "acceptable" porn and "unacceptable" porn may not be observed.

That's one reason to try to put some controls in place. Another is that Internet porn is often the equivalent of the sweet smelling sap of a Venus fly trap. It comes with malware, and it can be used to identify a vulnerable population for additional manipulation. A cognitively impaired young person makes a fine catch.

So we have controls -- lots of controls. Not that Apple makes it easy, rumor has Mac Parental Controls are abysmal by design (I so want to kick those engineers). Facebook on the other hand, can be more or less monitored through the User Activity Log. So we've been allowing monitored access, with no password access. In addition to our monitoring, Facebook promises... 

Facebook: "Facebook has a strict policy against the sharing of pornographic content ... "

Of course you'll notice they don't say they actually enforce that policy. Thanks to my diligent research assistant I can tell you that Facebook has a diverse and abundant quantity of porn. It appears that the average Facebook porn site lasts a few weeks before it's shut down, but there are always thousands of new sites to fill the gap. I assume the creators are using the Venus Fly Trap business model.

So much for Facebook. The trick then is how to manage the Facebook account - now known to the scum of the earth. In this case I used the User Activity interface to "unlike" the relevant pages (might be useless, but seemed a good cleanup step). Then I used Facebook's obscure Account Deletion page (https://www.facebook.com/help/delete_account‎) to torch the account.

Sometimes experiments fail. So we take a break and try something different...

Calibrating consequences: managing the iTunes purchases

I should have been more suspicious of the iTunes statements. There seemed to be a lot of them.

Eventually I connected with my spouse, and we realized #1 was exploiting an iOS 7 iPhone configuration error. When he inherited my 4S the iTunes account was configured for delayed authentication (the default [1]). Every time we bought a song or video, he added on a few more. Last year's Stanley Cup series was the giveaway.

When I collared him he pretended not to understand that his purchases cost us money. I respect that. If you have a cognitive disability, you might as well use it to wiggle out of problems. It didn't work though, he knew I knew that he knew how the charges worked. He quickly gave up that alibi.

So we needed consequences. What formula would be most educational, without inducing full rebellion or breakdown? How could we use this to advance his financial skills - and maybe even get some money back?

I needed a balanced formula -- something that had a built-in reward paired with a consequence extending over time. It had to be understandable to him, ideally something visual. After a bit of thought I came up with a formula that worked very well - not least because relatives gave #1 generous iTunes/Amazon gift credits this year.

I created two iTunes Playlists for him - one with the music he'd acquired honestly, the other with his criminal gains. [2] Each time he wanted a new tune, he had to pay twice. Once for the new tune, and once for an old one. I then "moved" the "stolen" tunes from the Unpaid to Paid list, in addition to putting the new purchase on his phone. We did the same thing for the videos.

After the first few purchases he caught on to how the system worked. He was clearly satisfied -- he likes justice fairly applied. Even, or especially, when it's applied to him. We went through about 1/3 of the backlog with his allowance and snow shoveling money, then a deluge of iTunes/Amazon gifts took out the rest. In an impressive gesture he cleared out the last 15 in one direct purchase.

Effective consequences require creativity; this one worked. I'll look for other opportunities to apply this kind of balanced approach. I know they'll come along.

[1] For us this was an annoyance, but in some cases the family financial impact could be serious. I wonder if Apple ever reverses charges on appeal... It would be "nice" if Siri could execute "configure this phone for a child".

[2] I intended to only sync the first to his iPhone, but with iOS 7 there's no way to prevent someone from using WiFi to put purchases music/video onto a phone. I turned the Cloud setting off, but he just turned it back on again. He's learned a lot from his iPhone.

"Explosive Child" Greenes has web site for "Disruptive Mood Dysregulation Disorder" kids and caregivers

#1 and I went snowboarding today. Which doesn't sound like much except that for him snowboarding has been more aspirational than real, and I'm a 50+ Dad.

I knew he needed me doing it with him, and what we both needed was bunny hill time. Not lessons, we did some of those years ago -- a borderline fail then. We needed sliding time in decent conditions.

Which we got. There were some anxieties of his I had to work around, some on the fly strategy invention, and of course I had to learn to snowboard (yay quick iPhone wikihow consultation) -- but we succeeded. Good runs on the greens for both of us. We stopped when he wanted to quit -- at a successful moment.

On the way home I thought of how far he's come since ages 3-7. Those were tough years, they left their marks on our faces. When I started this blog we were just emerging from the worst of it. By then we were experts in applying the lessons of Greene's "The Explosive Child", which I wrote about in 2007. 

It occurred to me that I ought to send Greene a thank you note. That led me to a relatively new site and organization of his, called Lives in the Balance. Nice to see the team working there. 

You can Tell Your Story | Lives in the Balance. I figured that would be one way to say thanks...

For our cognitively impaired multi-label son, ages 3 to 7 were hard. Very hard. I'm glad I don't remember them all that well; I do remember contemplating splitting the family so I could care for him away from his sibs.

We studied the Explosive Child intensively. It wasn't the only thing I studied -- operant conditioning with extinction of negative behaviors and rewards for positive behaviors was essential too.

Things started to get better around ages 7-9. We had more challenges, especially as he got older and stronger, but somehow his judgment developed just a bit ahead of his physical strength. The biting went away, the hitting went away...

He learned to read - at least to around 6th grade level. He learned many other things too -- hockey, swimming, snowboarding, biking, mountain biking, baseball, wrestling (ugh), xc skiing... Many more.

He's almost 17 now. Who knows what lies ahead. Things could go south at any time, but that's true for any of us.

He's come a long way.

The Explosive Child was the most important book we ever read ...

PS. Visiting the site I learned the "Explosive Child" has a new DSM-5 label: Disruptive Mood Dysregulation Disorder - replaces the misused 'bipolar disorder' for kids like #1. There's a comic outlining the evolution of the label, which is as good and as bad as any of 'em .... "PIA", Conduct Disorder, Oppositional Defiant Disorder, Intermittent Explosive Disorder, Pediatric Bipolar Disorder, Disruptive Mood Dysregulation Disorder.

Today's kids are falling behind. In bullying.

Today's kids just don't measure up. Back in the day we did more bullying in a day than this generation can manage in a month.

That's not the impression we get reading stories of bullying on social  networks, or NYT articles on girls at war (or maybe not). It also doesn't match the scary graph on this Guardian article. So it's my anecdote against the world.

Still. It's what I see with my special needs kids, and it's what other parents (usually younger than me) comment on.  We see high school sports teams not only tolerating special needs "managers" and athletes, but making conversation, exchanging polite greetings, even being supportive.

Weird. Nothing like we were.

I know things aren't this good everywhere, I hear from friends in the old country that bullying of special needs kids is still widespread in Montreal schools. I expect there's a lot of more subtle bullying we don't see.

Still. I think there's progress. In our personal experience, todays kids just aren't the bullies we were. They're failing at nastiness.

Special needs in Minnesota - notes from an ARC and family sponsored meeting

I joined a meeting tonight hosted by Arc Minnesota [1] which was both an opportunity to learn from the work of the local Bender family and a chance to chat with a few local politicians (all of whom I voted for of course).

Unfortunately I was delayed and missed part of the meeting, but I'll share some of the issues that came up. There's much more on these topics in a post from last year - Transition and employment - notes from a Minnesota presentation.

•  I heard some good things about the Legacy Endeavors, I think they'd be categorized as a "supported Employment Service Provider" though I'm fuzzy on the divisions.
• Arc is pushing for a 5% increase in reimbursement for aides and other caregivers in the special needs system. They've gone a long time with no salary increases.
• The ACA is reducing or eliminating the "parental fees" associated with buying into medical assistance (TEFRA) (!)
• Minnesota's Olmstead plan, which came out of a court settlement following the meto case, is starting to turn into laws. There's a focus on licensing and quality improvement for provider organizations and moving towards individual annual budgets and "increased flexibility" [2]. A long promised self-directed support option for personal are attendants might become real.
• There's some legislative pressure to limit use of family members as paid Personal Care Attendants due to vague fears of fraud and abuse. This practice is most common amongst 'communities of color' . The common pattern in special needs services is to put in place so many 'fraud and abuse' safeguards that programs become almost useless.
• The Federal move to limit use of group homes realized most of its money savings from reducing 24 hour surveillance costs.
• Minnesota schools are have accelerated inclusion programs in late High School. Personally we haven't noticed any changes - certainly not any improvements. (For example.)
• States vary in how they deal with maintenance of disability benefits when income rises above poverty level. Minnesota is particularly harsh -- ensuring special needs persons with disabilities will be just barely out of federal poverty. There didn't seem to be a lot of energy for changing this.

[1] I believe The Arc used to be A.R.C, and the R stood for what you might expect. Now it's an "Arc" as in the curvy thing. Incidentally, The Arc has a legislative blog. I had no idea - I've added it to the MSP special needs search engine.

[2] "Flexibility" can be a euphemism for "free to do whatever you want and here's a ticket out of town". We'll see.

The person with the hardest job in education is paid minimum wage and has had minimal training

I've mentioned this in prior posts, but it deserves periodic attention.

In most school districts special ed students are "mainstreamed" for several classes. #1, for example, takes Algebra - though he reads and writes at a 3rd-4th grade level [1]. (#2 is also "special ed", but his needs are different. He takes advanced coursework.)

Curiously, and this is why mainstreaming works better than one might imagine, #1enjoys his algebra and seems to get some of concepts, particularly those with visual analogues. (DragonBox helped). He'll never use Algebra in later life, but then neither will most of his neurotypical peers.

Of course he can't follow the regular class materials. That's where the hard job and no pay part comes in. He has an "aide" who is supposed to reinterpret the class material in ways #1 can understand. Yeah, in realtime, without an adapted text. It's a challenging task for a talented thinker who knows the source material very well and can adjust it to the peculiar features of an atypical mind. 

That talented thinker is, of course, not working for minimum wage. Instead the most challenging job in education goes to someone with limited education, no training, minimum wage and limited benefits.

It's interesting to think how we might do better even as our funding shrinks.

[1] Incidentally, long ago, when I was an ignorant physician caring for kids with disabilities, I did not understand how valuable it was to be able to "read at a 4th grade level". That level enables useful email, comprehensible texts, scanning newspapers, reading sports news and much more. The jump from 0 to 4 is bigger than 4 to PhD.

Explaining disability to a boy who won't go to College - truth and hope

I wrote the end of High School, the end of dreams six months ago. Before and since I've been thinking about how to explain to  #1 why he isn't going to get a (true) High School diploma, and why he won't be going to any of the Colleges he loves to dream about.

I think most would agree that this is not an easy conversation.

Fortunately he has given me time to think. He approaches the topic from time to time, but usually veers off. I think I now have a story that is true but leaves some hope and a direction.

The key is that he has many cognitive and behavioral disabilities. Some are more amenable to improvement than others. There's not much, for example, he can do about his base IQ. So I'm not going to talk about that; I won't say 'there are some things your brother and sister learn quickly that you cannot learn'.

I can, however, talk about disabilities that I expect to improve with time and effort. One his core disabilities is difficulty persisting in tasks that he does not enjoy. For example, he has always been a relatively talented hockey and baseball player -- but he is very inconsistent at practicing. Lack of practice means he plays at a C or rec level rather than at a more competitive level.

Of course his hockey or baseball activities, though important for his life, aren't my key focus. They illustrate a broader problem that has biological roots in cognitive fatigue and frontal lobe dysfunction. This biology, however, has shown more change than his base IQ. These problems appear to respond to training, practice, medication, and time. They are problems that can be addressed.

So it is, at the moment, that I expect to explain his disabilities this way:

It is hard for you to work on things you don't enjoy. We and others can help you learn to do that. When you are able to work hard on things that are tiring and bothersome, you will be able to do many things. If you want to do an online High School degree then you could do that too.

ADHD, CDD, and Related Conditions - what I wrote in 2002 holds up pretty well today

I started this blog in 2004, Best You Can Be, when #2 (Asperger) was 5 and #1 was 7. Since that time I've written about my thoughts on the nature of brain disorders and the limits of our medical classifications -- among other topics.

Today I rediscovered one of my last pre-blog classic personal web pages -- it was largely written in 2002 and when #2 was not-quite diagnosed and we were getting our heads around how to work with a 5 year old #1. In some ways the hardest times (to date!) were behind us -- but I'd had time to think about the nature of cognitive disorders and disability. I put some of those thoughts into a web article called ADHD, CDD, and Related Conditions.

Rereading it today it holds up pretty well -- I did a good job anticipating the next decade of evolving thinking about classifications and the nature of disability. If you're thinking of ADHD or similar disorders, it might be worth a scan even now.

Apple's iOS 7 is a big improvement for special needs community - parental controls that work

It hasn't gotten much attention outside of some Christian conservative and geek blogs, but iOS 7 has fixed the longstanding parental controls webkit hole. I first wrote about this problem back in August 2010, when I was particularly enthused about the benefits of iOS for #1 son's use.

That enthusiasm was muted by years of struggle with adolescence, impulse control, and the webkit access flaw he exploited mercilessly.

Now, with iOS 7, the struggle appears to have ended. With my permission #1 attempted, vigorously, to bypass the new controls. He failed, indeed he has had to sheepishly ask me to grant permissions for webkit holes I didn't know about [1].

In addition Apple has done some magic to deal with technical issues related to https use that have completely broken parental controls on OS X Mountain Lion. Today Safari on iOS 7 is much more useful for #1 and #2 that it is on Mountain Lion.

iOS 7 is buggy, and does run somewhat slowly on old iPhone 4 hardware, but this one improvement is more than worth the cost.

[1] Example: In MLB baseball player stats display uses embedded webkit, and so they are a potential avenue to the unfiltered net.

Update 11/29/2013.

Siri: "Show me pictures of dogs". Shows dogs.

Siri: "Show me pictures of xxxx"....

You have to disable Siri, there are no parental controls there. I wonder sometimes if we need a different kind of IQ testing for #1.

Special needs and population health management

Buried in a discussion of improving care of patients who spend a lot of time in emergency rooms, and who cost health care systems a lot of money, is a very interesting phrase

Practicing Award-Winning Population Health | McKesson Better Health

... HCMC decided to open the Coordinated Care Center after its internal studies showed that 3 percent of its patients were responsible for about half of its total costs. To ensure a focus on those high-cost patients, the care center has admitted only patients who had been hospitalized at least three times in the previous 12 months.

... HCMC realized that drug use, homelessness, mental health issues and cognitive impairments are “the kinds of things that fuel super-use,” he says, so it structured the Coordinated Care Center around multidisciplinary teams that include not only doctors but nurse care coordinators, social workers, behavioral health workers and drug abuse counselors who “work together on the underlying problems.”...

Drug use and homelessness are always included in discussions of health care costs, but I do not recall ever seeing mention of cognitive impairment, and of programs specifically targeting cognitively impaired adults who are seen in emergency rooms.

I'll be tracking this.