Special Hockey Minnesota: another season begins

It's been six years since Special Hockey began in Minnesota. Now there are teams throughout the state and even into North Dakota.

A new season has begun; this year we'll be doing more advanced skill development. A year or two ago we were the national champions. Susie and friends have put together a pretty good program.

Even after 6 years of it, I'm always a bit amazed that it works. The range of players is astounding. One team has a gentle forward who's 6'8". We have six year olds. Girls, boys, women, and men. We have players who are minimally verbal and players with Aperger's who take advanced study classes. We have chair bound players pushed by aides, and players who've played mainstream hockey.

There's been a lot of progress over the years. Even players with significant motor disabilities often learn to skate. Some players have joined rec leagues. Others have used benefitted from a supportive environment to learn flexibility and adaptability.

There are many similar opportunities in Special Olympics, but for us this activity has worked extremely well, and we include many players who would not be SO eligible.

It's a movement worth supporting.

Special needs adolescence: separating compulsion from poor choices

#1 son is deep in the unknown country of special needs adolescence. He hasn't necessarily added OCD to his ADHD, but there's always been an element of obsession and compulsion in his nature. That's a bigger problem these days.

When I consider the behaviors I'd like to change, I find it useful to divide them into two categories:

• compulsive behaviors
• poor choices

Of course all behavior is a mixture of both, but it's still, I think, a useful distinction. Consider, for example, a man who loses $1000 playing poker in Las Vegas. If he can afford to play and lose, he doesn't have a problem. If he chose to play and can't afford to lose, he made a poor choice. If he was compelled to play, whether or not he can afford to lose, he has a gambling problem.

 

There are ways to change behaviors, but the techniques for changing choices are different from the techniques for changing compulsive behaviors. Most importantly, his choices aren't in play if his behavior is compulsive. Until we address the compulsion/obsession aspects of his behavior we can't work on his choices.

 

So we're studying techniques that have been developed to address obsessive-compulsive disorder (OCD). These fall into two broad divisions: behavioral and cognitive. Because of his low IQ we clearly need to emphasize behavioral therapy.

 

From what I've read so far than means "Exposure and Response Prevention" or "Exposure and Ritual Prevention", which is apparently based on "Pavlovian extinction" or "respondent extinction" (something we're a bit familiar with).

 

Based on my limited readings I'm putting together a plan that we can review with his therapist, and a reading list (below). From the list I can see that if Ross Greene is the guru of the explosive child, then Enda Foa is the guru of compulsion management. 

See also (clearly Edna Foa rules):

• Randomized, placebo-controlled trial of exposure and ritual prevention, clomipramine, and their combination in the treatment of obsessive-compulsive disorder... Foa et al, [Am J Psychiatry. 2005] - PubMed (Clomipramine didn't seem to add anything! This article can be freely downloaded and is quite readable.)
• Exposure and ritual prevention for ob... [J Consult Clin Psychol. 2003] - PubMed
• Exposure and Response (Ritual) Prevention for Obsessive-Compulsive Disorder: Therapist Guide (Treatments That Work) (9780195335286): Edna B. Foa, Elna Yadin, Tracey K. Lichner
• Amazon.com: Stop Obsessing!: How to Overcome Your Obsessions and Compulsions (Revised Edition) (9780553381177): Edna B. Foa, Reid Wilson (Amazon's "customers who bought this also bought" list is extremely useful)
• Treating Your OCD with Exposure and Response (Ritual) Prevention: Workbook (Treatments That Work) (9780195335293): Elna Yadin, Edna B. Foa, Tracey K. Lichner
• International OCD (Obsessive Compulsive Disorder) Foundation
• NIMH · Obsessive-Compulsive Disorder, OCD
• Be the Best You can Be: Changing behavior in children: Kazdin for most and what we do now
• Be the Best You can Be: Training exotic animals, husbands and difficult children 6/2006
• CTSA: OCD (Foa's center)
• Augmentation of behavior therapy with D-cycloserine for obsessive-compulsive disorder... [Am J Psychiatry. 2008] - PubMed - NCBI - interesting, but needs replication

NYT OpEd on Immune disorder causes of autism: extremely suspect

The NYT has published an opinion piece by Moises Velasquez-Manoff claiming that at least 1/3 of autism is fundamentally an intrauterine inflammatory disorder associated with a widespread increase in immune disorders arising from our parasite-deficient modern lifestyle.

The extended essay includes this key phrase: "Generally, the scientists working on autism and inflammation aren’t aware of this — or if they are, they don’t let on."

That's a telling phrase. What we have here is an expansive theory outside the established research community claiming a dramatic breakthrough.

Well, those things do happen - particularly in medicine. I remember prion disorders and helicobactor pylori discoveries; two Nobel prize winning discoveries that were initially radical.

Except this appears to be Manoff's theory, and he's not a scientist. He has a BA in Literature and an MA in science writing. The number of breakthrough insights into long researched disorders delivered by non-scientist non-researchers is essentially zero.

Maybe our lack of a parasites is a problem; I well remember early studies on treating ulcerative colitis with iatrogenic parasite infection. Maybe there are immune abnormalities that correlate with some causes of autism. Maybe intrauterine inflammation, of microbial or other etiology, play some role in brain injury. 

But putting them all together into one package claiming a major breakthrough by a non-researcher? That's multiplying improbabilites. 

The New York Times should never have put this on the OpEd page. 

Ignore it.

Special needs adolescence: enter the unknown country.

To us raising a healthy neurotypical child seems almost absurdly easy. Send them to school, try to avoid major injuries, apply some basic behavioral modification measures, don't do bad things, have fun. It seems more of a hobby than a job.

Except then comes adolescence. Sometimes it's fairly quiet, sometimes it's hell -- even for a neurotypical child. Parenting starts over as the human brain goes through a painful and problematic reboot. Considering what we have learned about the extent of brain remodeling during adolescence, it's astounding that the young male can function at all. It's not surprising that things can go badly.

Special needs adolescence, is, of course, even more complex. It is truly an unknown country; unexplored and unmapped. In special needs adolescence brain remodeling is running against a background of dysfunction and compensation. Even more than neurotypical adolescence, it would be surprising if it went well.

In our case #1 does not disappoint. He is complex and challenging. Our mission therefore is to get through this with an intact family, no jail time, and have him positioned to resume life.

It may be helpful (or discouraging) to share part of his story - at least in the abstract. Imagine, to begin with, a mixture of behaviors from ages 3 to 15. A taste for both stuffed animals and educational web sites (I've learned a lot.) Imagine previous disabilities, but now with new features. So anxiety and irritability ("Explosiveness") remain - but now there are features of obsessive-compulsive disorder. Compulsions and obsessions not only with airport schedules and soccer teams, but also with unearned acquisition and icons of lost childhood. Now add confusions in sexual identity. Next add a growing and well deserved fury at newly recognized limits for independent life, for education, for sexual expression and partnership. Did I mention integration of an exceptionally difficult adoption narrative?

Yes, complex and challenging. Travel, for one, is far more difficult. Just as we would want him to be more independent, he requires even more monitoring. Alas, his guile and stealth belie his measured IQ; our monitoring is not always successful.

It could be worse of course. He's not a threat to himself or others. He's not hitting or biting. He's reasonably good to his siblings and kind to animals. He can still be charming. Alas, going by past experience, things will get worse before they get better.

So, somewhat creakily, we pivot. (Our pivoting doesn't get easier as we wear out.)

Now we need to learn about behavioral management for OCD. Now we need to meet with his psychiatrist and review medications. Perhaps we will need to decrease stimulant use, and consider SSRIs (though he did poorly on them as a younger child). We may ask his therapist to consider family rather than individual therapy, especially since he now likes to engage his younger brother as an advisor and "lawyer" in matters of family discipline.

We can expect some confusion from our consultants; #1 is usually a bit out of their playbook. As always, we will have to come up with our own program, based on bits and pieces from books and experienced therapists and our own experience and judgment.

We will have to map the unknown country as we visit it.

GPS tracking for an impulse-control teen

We'd like #1 to travel further afield on his own, but we have reason to distrust his judgment. So we'd like to be able to track him.

At one time I thought we'd be able to use a smartphone tracking device, but the same judgment issues that limit his independence mean data plans are also problematic. I don't know of any smartphone that would support gps tracking and robust data access controls.

So now we're looking into dedicated gps tracking devices. The market for these devices tends to be prisoners, demented persons, children of anxious or wealthy parents, special needs kids, dogs and high value goods. So a bit of a niche marke. The devices typically need some sort of data plan; the real costs are the data plan costs. I don't know of any devices that work with, say, Google Latitude.

I'm unimpressed with marketed items like the Amber Alert GPS Armor and the Spark nano 3.0 GPS tracker The dog GPS trackers are a little more interesting, such as:

• Tagg-The Pet Tracker Master Kit: one year service about $8/month. So-so Amazon ratings.
• Garmin GTU 10 GPS Tracking Unit: GPS & Navigation: $100 for 1 year service, so $8/month. Very poor Amazon reviews.

Using "Tagg" and "Garmin" as keywords I was able to find some relatively interesting discussions (the baseline Google results were SEO-scam infested).

• The Ultimate GPS Child Tracking Buyer's Guide (GPSmagazine.com): They liked the "WorldTracker GPRS" at $830/year (wealth market) or the Amber Alert GPS for $20-$30/month.
• Tagg the Pet Tracker Review — The Gadgeteer: Software weak.
• GPS for Pets - Consumer Reports: as above, nothing impresses

My overall impression was there's nothing good on the market at the moment. The Tagg device is probably the least bad.

So now I have to consider plan B again -- is there a way I can make his iPhone work ...

Update 6/2014: U.S. Will Finance Devices to Track Children With Autism (1/2014). Justice department, I don’t know if this is in place federally. Since I wrote this article in 2012 Find My Phone has become much more secure, so a minimal data plan with Find My Phone would work on iPhone. 

More significantly, there’s an entire site dedicated to wandering management in autism. Look there!

Google's Project Glass - it's for special needs too

Google is marketing lightweight "Glass"(es) that include a constant computer connection and enable recording and transmission of surroundings.

Google is frantically marketing this to young, healthy people. This mystifies everyone.

There is, however, a market ...

Gordon's Notes: Google's Project Glass - it's not for the young: 

... We don't mind having something identifying people for us,  recording where we've been and what we've done, selling us things we don't need, and warning us of suspicious strangers and oncoming traffic. We are either going to die or get demented, and the way medicine is going the latter is more likely. We need a bionic brain; an ever present AI keeping us roughly on track and advertising cut-rate colonoscopy...

Anything that helps cognitive function in the elderly can also improve the life of special needs adults. Google Glass may be important for our community.

Shaving and the autistic adolescent: gadgetry wins

My 15 yo is a hair guy. With a wedding to attend, he knew he needed to shave.

He didn't like the idea at all. He may have poor impulse control, but he knows he doesn't want sharp things near his face.

So I decided to go for something he'd like -- a shiny gadget. I turned to the Geek Consumer Report, Wirecutter, for the right gadget ...

The Best Electric Shaver | The Wirecutter

... The sweet spot of value in Panasonic's line is the ES8109S. It can be had for about $120, has nearly all the tricks the Braun does and then some, but it is not as good: It has a water-based cleaning system, offers a shave that is slightly less close, and it's noisier with a weaker design, to boot. The Panasonic blades hum at 13,000 RPM and it's wet/dry so you can use it in the shower (which you can't do with the Braun) and Panasonic claims to refine its blades with the same techniques that were used by sword makers in old Japan. It might be marketing, but it's pretty good marketing, built around a solid gadget. Consumer Reports gave it a 78/100, two points less than the Braun 7 series. But it's also ranked higher than a sibling Panasonic shaver costing $300, so you know you're getting a steal. And Amazon's users give it a 4.5 out of 5 star rating, averaged from 481 reviews...

It was $100 from Amazon. He was thrilled. Tore open the package, studied the complex cleaning ritual, and put it to work as soon as it charged. Did his face and decided to try his legs too (that will itch). His reward was to run the ultrasonic cleaning cycle (crazy gadgetry -- Panasonic's evil desire to tie a recurring revenue stream to the device).

Worked for us.

Google Custom Search - Special needs services in Minneapolis and St Paul

Some years ago I put assembled a Google custom search engine for special needs topics in Minnesota and particularly in the MSP region. I tried it out recently and was disappointed in the results.

Happily, I've learned a bit more about tuning these Google services and in a few minutes I had a new and improved version. If you have a special needs topic, and you live in Minnesota, you should give it a try: Google Custom Search - Special needs services in Minneapolis and St Paul.

Add a comment to this post if you find a problem or there's something you'd like to see added. There's an embedded version of this engine at the top right side of this blog.

Motivation and creativity: Adolescent special needs and crime

Number one proudly showed mother a bag of candies. The facility went to DEFCON 2 - on Mother's day morning. This was his way of confessing to a hot crime.

These are the mornings where we are reminded that, even in difficult economic times, society has ample housing for special needs adults. 

Not that he's doing all that badly. In mid-adolescence his behavior is much improved on years past, and quite a bit better than when he was three to five years old. Alas, the room for error is also much less; a 15 yo doesn't get the latitude of a 5 yo. It probably helps to register with the local police [1], but overall the stakes are higher. Of course.

So, DEFCON 2 it was. Fortunately, we're professionals. Mother calmly asked how he'd come across the candy on a Sunday morning bike ride. He had a ready answer. A construction crew friend gave it to him. Of course this would violate the no-accepting-gift rule, but it is true that he's gotten gear from the construction guys he "supervises" during the work season. Candy on Mother's Day Sunday though? Even he knew that wouldn't fly.

There were two places he could have picked 'em up from, and I hit the managers at both. One didn't carry the candy sample, but the other had jackpot. The good news is he'd paid for 'em, and the clerk remembered how much he pulled out. Stealing from my wallet is more of a learning opportunity than a crisis. Heck, a friend of mine did much worse as a kid and he's a judge now.

Still, there were bad things to rule out. Stealing from my wallet was a problem, but getting paid off by an adult would be far worse. We needed to know where the money came from. Fortunately we were set for the real third degree. The best way to corner a perp, after all, is start with the answers. 

Good cop, bad cop again. The method that works best is calm silence and some leading questions - "We know you know we know". Repeat back what he confesses, guiding him along. Take breaks when he stalls; let him spin out the alibis until they crack. Let him choose who to talk with.

That's where it got interesting. His second alibi was quite creative. It built on a friend's story and through in a bunch of persuasive detail. It only had two big fractures. One was that he got a trophy so big it wouldn't fit in our car -- so he left it at home. He forgot to claim that he'd won a cash prize, thus suggesting he'd stolen cash from the till. Lastly the event took place a week ago -- and there's no way he could hold onto cash that long.

Still, it was the best creative story he's ever told. I didn't know he had it in him. Even as the interrogation proceeded I took mental notes; now I could raise the bar for his creative school work.

Eventually he confessed. He put the remaining funds back in my desk drawer -- easier than handing it over to me. I said owed me $4, so we mowed the neighbors lawn and I called that even. The hardest thing for him was the idea that despite paying me back he didn't get to keep the candy. So I came up with a way for him to earn another $1.50 from his piggy bank and some work and we retrieved one candy box from the garbage.

A good days work overall. I'd already ordered a cash box, but I don't want to remove temptation entirely. Instead I'm going to put my wallet in the cash box, but leave $5 in my drawer. When the money goes, I'll know we have a learning opportunity. If he passes on $5, I'll move it to $10. 

Training.

[1] In our community the police like to know which teens are special needs. This won't make any difference under emergent circumstances, but if they're called for shoplifting or they pick a kid up it can.

Alternative housing for special needs adults - the MEDCottage

This was setup for elderly parents, but there are obvious implications for special needs adults (emphases mine)...

In the Backyard, Grandma's New Apartment - NYTimes.com:

.... a MEDCottage — a prefabricated 12-by-24-foot bedroom-bathroom-kitchenette unit that can be set up as a free-standing structure in their backyard. It’s more than a miniature house — it’s decked out with high-tech monitoring and safety features that rival those of many nursing homes....

... The Australians, who began building simple backyard homes for the elderly in the ’70s, call them granny flats. In the United States, these self-contained units have earned another nickname: granny pods...

... the Pages will become the first family in the country to take delivery of a high-tech MEDCottage. The cottage is laid out as an open-plan apartment with a kitchen area (equipped with a microwave, small refrigerator and washer-dryer combo), a bed area and a bathroom large enough in which to maneuver a wheelchair. The utilities and plumbing connect to the primary residence....

... The cameras sweep an area 12 inches above the floor, so normally all they transmit are images of feet and ankles...

... Currently about half of the states allow these accessory dwellings for a family member, according to Mr. Dupin. (Several additional states, including New York, are considering legislation explicitly permitting granny pods.)...

... The cottage costs about $85,000 new; Mr. Dupin’s distributors will buy it back for about $38,000 after 24 months of use...

... For caregivers in the tristate area who like the idea of aging in place, there’s another prefab alternative: P.A.L.S., short for Practical Assisted Living Structures.

... Attaching a portable pod didn’t cost much more than retrofitting his home, and the unit could be set up faster and with less mess. So last year he contacted Henry Racki, P.A.L.S. creator and a Connecticut home builder who also is a certified aging-in-place specialist... 

... Though each P.A.L.S. unit is customized to the client’s needs, the standard 20-by-14-foot bedroom and bathroom unit starts at about $67,000. Homeowners can also lease a unit. A five-year lease runs about $1,700 per month, after which you own the unit.
The pod comes with phone and TV cable lines built into the wall (no wires to trip on), a closet with levers that lower the clothes to wheelchair level, motion detectors that automatically turn the knee-high night-light system on, showers with grab bars and various types of no-step entries, wheelchair-accessible sinks and comfort-height toilets.

So far, Mr. Racki has set up 10 of these mini-homes in Connecticut, Massachusetts and New York. Zoning in Connecticut doesn’t usually allow for full kitchens, Mr. Racki said, but they can be included. He helps clients get all the permits and zoning approvals needed.
None of the P.A.L.S. purchasers so far have requested high-tech medical monitoring. But a system similar to the MEDCottage’s can be added for $16,000...

I didn't realize there was so much innovation in this area. Astonishing that similar devices have been use in Australia since the 1970s. There will be enormous pressure to find a way to care for demented elderly over the next 30 years; systems like this will be made legal in every state.

In my own case, when I'm demented I expect my daughter to build one on the side of a very steep cliff (which is what I personally would want).

For my son however, something like this may be needed for a longer term, presumably as a form of rental unit.