AI and special needs adults: The AI Guardian is in sight

Over the past decade I've written on social media about the concept of an AI Guardian, but I realize I've never put it into a blog post [4]. With the release of the LLM AIs [1] including ChatGP4, ChatGPT plugins,  and recently GPT Agents (GPTs) the AI Guardian is much closer than I'd expected. So it's time to write something.

First, of course, I decided to ask ChatGPT. I've never seen the concept of an AI Guardian online, but evidently I've been looking in the wrong places. As of its April 2023 incarnation ChatGPT4 has quite a bit to say:

You: What do you know about the concept of an "AI Guardian" for special needs adults?

ChatGPT

The concept of an "AI Guardian" for special needs adults, particularly those with low IQ or autism, revolves around using artificial intelligence to provide support and assistance in various aspects of daily life. This concept is still emerging, but it has several potential applications: 

Safety Monitoring: AI can be used to monitor the individual’s environment for safety hazards or emergencies, alerting caregivers or authorities when necessary.

Routine and Schedule Management: AI systems can help in managing daily routines, providing reminders for medication, appointments, and other important activities.

Behavioral Analysis and Support: For individuals with autism, AI can analyze behavior patterns to predict and mitigate potential stressors or overstimulation.

Communication Aids: AI-driven tools can assist in communication, especially for non-verbal individuals or those with speech difficulties, by interpreting signs, gestures, or other forms of non-verbal communication.

Learning and Skill Development: AI can offer personalized learning experiences and skill development activities, tailored to the individual’s needs and learning pace.

Social Interaction Facilitation: AI can help in guiding and facilitating social interactions, which can be challenging for some individuals with special needs.

Health and Wellness Monitoring: Continuous monitoring of physical health, including vital signs, sleep patterns, and physical activity, ensuring prompt response to health issues.

This concept is still in its nascent stages and raises important considerations regarding privacy, ethical use, and the need for human oversight. It's crucial to balance the benefits of AI assistance with the dignity and autonomy of the individuals being assisted. As a physician with experience in health informatics [2], you'd appreciate that while AI can provide valuable tools, it cannot fully replace the nuanced understanding and empathy provided by human caregivers.

Well, that covered the bases. I would love to know what ChatGPT4 has been reading on this topic.

In our family iPhones and narrow focus AIs like Google Maps have been both an essential tool for independence and a screen addiction curse [3]. The ability to locate our children was key to them learning to navigate by bike and bus. Mapping tools compensated for very limited navigation ability. Calendaring helped with anxiety and organization. Notes and Reminders helped with memory and recall limitations. Beyond the obvious advantages of messaging we discovered both our children were better able to process text messages than verbal communication -- especially for difficult topics.

Now there is the near term prospect of far more support going forward. Monitoring email, messaging and apps for the scams and frauds that live on the cognitively disadvantaged. Monitoring financial transactions for worrisome trends and events. Monitoring home environments for worsening or dangerous conditions. Encouraging better diet and activity.  Acting as a job coach. Appropriately paced and reinforced lifelong learning. Guiding our children through the vast complexity of medical care. Even providing a form a companionship in time or facilitating finding company in the physical world. Doing, in other words, what Emily and I do after we are incapacitated or (inevitably) dead.

In the absence of personal immortality for Emily and I the AI Guardian is the best hope for our children's longterm health and happiness. Even as I have profound concerns about the disruption that comes with the rise of the modern AI I also have hope for a better options for the cognitively disadvantaged.

- fn -

[1] Some dislike applying the term "AI" to Large Language Models because they don't appear to be conscious or sentient.  Much of my professional career was loosely related to precursors of modern AI and there is absolutely no doubt that in 1995 we'd have called ChatGPT a bloody scary AI. The goalposts are mobile. LLMs are AIs by any reasonable definition. Insofar as we understand human cognition we do much of the same things that LLMs do.

[2] This "as a physician" bit startled me until I remembered that I'd given ChatGPT4 that information as a persistent context for our sessions.

[3] I tried writing a book on how best to balance these harms but I gave up when I finally accepted that there was absolutely no interest in such a book from the community I was writing for.

[4] A 2015 post on Google Inbox was the closest I could find on the topic of AI assistance. I tagged that nsAI for non-sentient AI.

Special Needs CrossFit

It's been two years since #1 started working with a personal trainer I knew from her CrossFit coaching, maybe one year since he started going to my regular CrossFit classes.

#1 is 23 now. He can read at about a third grade level, most of his writing is text messaging to Emily or I. He's impulsive, but has generally done well with listening to coaches and workplace supervisors. Putting it all together I thought CrossFit was a bridge too far. Trying it was his idea, not mine.

I was wrong about that. He can now do up to 2/3 of a workout with some minor guidance. Sometimes he does less, but over time he's getting better. His belly grew during the lockdown, it's been shrinking since our gyms reopened. His mood is substantially better. He rarely pushes the limits of his strength, but when he does he's clearly stronger than his 61yo Dad (he is built like a bull - his "max effort" is my routine effort).

If he persists then sometime in the next 3-4 years he will be doing the men's "Rx" workouts. I can rarely do those.

The box has been supportive but they really haven't done much for him beyond any other member. They know his name, tolerate his eccentricities, and pretty much let him do his own thing. Coaches don't push him and that's the right choice.

Anything could happen tomorrow. He has often given up on things he's good at, often for no reason he can express or we can imagine. Sometimes he goes back to them, sometimes he doesn't.

Still, it has been done. He's not the first special needs adult to do CrossFit it a regular group class, but around here he's been a pioneer. Again.

Tips for managing one Asperger's athlete

Both #1 and #2 are physically active. This is very much by design and lifelong persistence. #1 often enjoys team sports and personal bicycling, but these activities are also agitating, disturbing, and anxiety provoking. He’s very sensitive to criticism, very insensitive to advice and feedback, and by nature macho and blunt. That is a hard combination, but #2 is harder.  I think #2 may be more typical of the active Asperger’s athlete.

#2 does not like exercise. He does it because it helps him psychologically as well as physically and because he wants to please me. I encourage it because it’s critical to his mental health. He is poorly connected to body signals — so I have to remind him to drink water, to eat, and adjust clothing to temperature. He dislikes this advice and when he’s stressed he reacts badly — but he is learning to use “I don’t want water” as a signal that he’s moving into a difficult mood zone. He does best on a full stomach in cool or cold weather and poorly in hot conditions.

#2 dislikes some activities less than others. Special hockey works for historical reasons and because his brother does it. It helps that the ice is cool. Currently he least dislikes mountain biking, cross country skiing and inline skating. He has liked climbing in the past but climbing gyms are a poor location for a meltdown (which still happen). He does all these things at what I consider a novice pace; far slower than he could manage if a bear were after him. Only hockey triggers bursts of impressive speed. His pacing doesn’t change even when he becomes skillful; he handles inline skating terrain with aplomb, but always slowly.

Unsurprisingly I’m almost always his one-on-one coach. There can be other coaches around though; such as on the High School Mountain Biking team he rides with. I sometimes think about what tips I might give those that are interested in helping people on the spectrum. In order of decreasing confidence I came up with…

1. Ask parents/guardians what works and what to avoid.
2. He won’t remember your name or that of any other riders. He won’t recognize your or anyone else if you see him on the street. He won’t remember you without cues. If you see him in a social setting say “Hi, I’m X. I am one of your coaches. It is good to see you. See you at practice. ” That’s about right.
3. His limits are psychic, not physical. He very rarely approaches any kind of physical limit, long before that he feels emotionally exhausted. At the very best he can do about half of what a novice can do.
4. He thinks social interaction and manners are a very good thing. He also finds them exhausting. This frustrates him as he wishes he could do them. He likes a short greeting, but dislikes any questions. He is temperamentally unable to engage in typical social conversation; for him insincerity is a crime. (He’s very sympathetic to people in distress if he recognizes the distress. He loves counseling people by letting them vent.)
5. Give intermittent low key positive feedback. Understated, brief, positive. “Nice climb ___” is good. Minimize enthusiasm.
6. Avoid any criticism of the form “you’re doing x, you should do y”. He has a wildly exaggerated response to well intended criticism; he plunges into despair.
7. Give feedback in the form of “It’s ___ I’m going to ___”. For example: “It’s hot - I’m taking off my jacket.”, “I’m thirsty, I’m going to drink water.”, “I’m going to go fast down this bit so I can quickly climb the other side."
8. He can be unexpectedly talkative. Polite responses are good. You don’t need to contribute much, just occasional topic related verbal prompts.

Special needs bike commuting -- it's cognitively demanding

This is probably more obvious to most people than it was to me. My judgment is distorted by a lifetime of urban bicycling.

It was very difficult to teach #1 and #2 to ride a bicycle (it would be easier today - we know more). Almost as hard as teaching them to swim. They did well in the end though. #1 competed in high school mountain biking and I think he is a relatively safe urban cyclist. His impulsivity and rigidity are balanced by native caution and seemingly strong visual processing. 

#2 has a substantially higher IQ than #1, but he’s a weaker bicyclist. We did a trial bike ride to school today; he did well with guidance but he was exhausted. I think the relatively simple ride was cognitively draining. #2 is closer to the classic Asperger’s pattern — persistent attention to the external world is very difficult. He may never be able to bicycle commute safely, though he does well mountain biking (and inline skating - remarkable balance there).

In retrospect I’m not sure urban bicycle commuting is cognitively less demanding than urban driving. There’s more time to plan actions, but there’s a lot more judgment involved. By comparison car driving is more rule-bound.

Special needs mountain/gravel biking, or bicycling on separated trails, works for #2. Bicycling on city streets - not so much.

Special Olympics Minnesota: Athlete Leadership Programs

When he was in High School #1 participated in both adapted and mainstream school (ex: Mountain Biking) and community (ex. Minnesota Special Hockey) sports. His coaches have been some of the most important people in his life; what High School skills he’s developed came as much from his sports work as school work.

Even in his High School years, however, recreational sports were becoming more challenging. His teammates turned into young adults — a somewhat difficult population for a young man with a significant cognitive disability.

He’s in “transition” now (more to come on that I’m sure) and he’s almost 19. After a successful experiences with golf (state champ his div) and tennis (state champ his div) he’s doing more with special olympics. Most significantly, he’s developing personal relationships with other athletes, including role models who’ve taken on leadership positions in special olympics.

Which leads to our next project — engaging him in Special Olympics Athlete Leadership through Minnesota’s Athlete Leadership Programs. This won’t necessarily be easy — he has only recently shown an interest in helping other people and it’s still limited [1]. I’ll have more to say if he’s able to do the December program. If not I think special olympics will be very helpful for him as an athlete participant, particularly because of the role models who’ve completed these programs.

- fn -

[1] People with Downs Syndrome generally have more agreeable and pleasant temperaments than people with Autism — speaking as a father with much experience with the latter. Special Olympics used to be predominantly Downs Syndrome, but selective abortion is making Downs much less common. I am sure that is having many impacts on the organization.

Magical thinking

Many people have superstitions of one kind or another. Our #1 has more than a few, and they contribute to his disabilities. For example, he bicycles miles out of his way to take certain favored routes for no reason he can describe.

He’s had these problems all his life. The only thing I can compare them too is a beloved dog of ours who developed an intractable aversion to the back yard of a new home. Nothing, absolutely nothing, would persuade her to put her paws on the unfrozen ground there. We have no idea where this came from, but it never wavered over the last seven years of her life.

It may be some dysfunctional associative learning — perhaps something unpleasant happened to #1 once and he forever associates it with a similar smell or shape or form. The rest of us can form these associations and dispense with them, but that process doesn’t work for him. This learning/memory dysfunction probably overlaps with some of the problematic compulsions we work on.

Sometimes we can find a workaround for the most troublesome aversions. One of these is a powerful aversion to any kind of bicycle adornment — including a saddle, frame, handlebar bag, a rack, or a lock. He’ll use the pockets of his bike shirt but that’s it. After some failed behavior change efforts we realized this fell into his “magical thinking” domain — reasoning is futile.

This is a safety problem because he rides his bicycle around and even beyond the metro area — thanks to our superb segregated bicycle paths.  Mobile phone technologies including Apple’s “Find Friends” mitigate some of the risk, but what if his phone fails? We need him to carry identification, emergency numbers, a multi-tool, a baggie to protect his iPhone in case of rain, coins for a rare payphone if one can ever be found and, ideally, auxiliary power for this phone. He’s not willing to put everything we want him to carry in his bike shirt.

We found a fix. He’s willing to carry these things in a bicycle bottle shaped container that’s stored in a typical frame mount bottle carrier. We put them in once and they stay there. One magical thinking problem solved.

There are a lot more of course. A direct assault rarely works. It’s all about finding these kinds of indirect solutions. We can’t always come up with them...

Lessons from 18 years of a "disruptive mood dysregulation disorder" child

Just back from a Mountain Bike outing with #1. We had a great time. Can’t be that that many special needs NICA mountain bike racers; it’s something he’s proud of. He’s already telling tall tales of his daring runs. Another happy memory.

It didn’t have to be happy though. I’d planned a 3 day trip — some biking, some hanging, some other stuff. Instead after biking on day one he said he wanted to go home. Of course I’d already paid for two nights of peak season lodging.

It’s not clear why he cut the trip short, but in retrospect 3 relatively unstructured days was a lot for him. To make that workable I’d have had to plan out all 3 days in detail, and get the schedule on his iPhone calendar. I think he was also missing his sibs, especially since #2 is leaving for a 1 week autism away camp. Our kids are close, glued by shared struggle.

So this was yet another test for Dad - I’d spent the money, and now he wanted to bail. Did I fight for the principal of “commitment” or fold?

I said it was a happy memory, so you can guess I folded. The money spent was a sunk cost. It didn’t matter any more.  Once I told him we’d head home his mood transformed and we had a happy dinner. The next morning he hung out while I went off on a bike adventure of my own. We had a fun drive home. Tonight he remembers the trip fondly. I passed the test.

Our drive home gave me time to reflect. #1 is 18 now, and he’s “finished” [1] High School. Overall we’re about where I’d hoped we would be with him. There’s lots to work on, but he keeps making progress. Maybe we all did something right, not least his coaches and teachers.

So what did we do right? I think I can put it into 6 short phrases, 5 of which are deliberately familiar.

1. Choose your battles.
2. Make happy memories.
3. Accentuate the positive.
4. Cut your losses.
5. Tomorrow is another day.
6. Quit when you’re ahead.

Yes, 5 of the 6 are clichés. I did that deliberately; I realized I could take my original language and turn it into something superficially banal. Read it and try to imagine that you’d never heard those words before.

 

Here are the same ideas in the same order, but with different language…

1. Greenes/Explosive child: Divide behaviors into A (irreversible harm risk), B (criminal, reversible harm, C (infuriating, obnoxious). Always work on A, take B selectively, C is nice to do.
2. Make happy memories. Memories are made of doing things. Declare victory early. Take pictures. Put ‘em on the family screens. Burn the happy memories into the kids brains. Soon they’re programmed into thinking life was all happy. They forget the rest…
3. Kazdin and Shamu: Reward desired behavior, ignore (extinguish) unwanted.
4. Realize when you’ve got a losing hand and fold. That’s what I did today. After a while you know when you can win and when it’s time to remember what a sunk cost is.
5. It’s not a sprint, it’s an ultra-marathon. Don’t burn out in one battle, there will be time to engage with a winning hand.
6. When you’re winning, declare and celebrate victory. Don’t wait to see things to the end, celebrate the moment. Do this right and you have a heck of a winning streak. In this season, we have the power to define when each game ends and a new one begins.

- fn -

[1] He’s actually in an indeterminate state, which is a weird arrangement peculiar to special needs students. He completed his adapted course work, but after the graduation ceremony he was diverted from picking up his diploma. This magically keeps him in the school system, so he’s funded for a “transition” program that’s supposed to teach “work schools”. We think of it as 3 years of somewhat useful entertainment while his frontal lobes develop. I assume this weird arrangement is a time honored manipulation of old statute language.

I may write more about High School (the sports teams were the best part) and “transition” in future. There’s a lot to say, most of it mixed.

See also

• Things we might have done differently: High School 3/2015
• Changing behavior in children: Kazdin for most and what we do now 4/13/2015
• “Explosive Child” Greenes has web site for “Disruptive Mood Dysregulation Disorder” kids and caregivers 12/2013
• Training exotic animals, husbands and difficult children 6/2006
• Resolution 242 - discounting sunk costs 8/2010
• Be the Best You can Be: Techniques for negotiation with people on the autism spectrum 11/2014
• Be the Best You can Be: Reading about autism and ADHD - our personal favorites 11/2007

You never know ...

One of our family's big achievements in our early years with special needs and autism was teaching both boys, #2 with classic autism (now "Aspergers") and #1 with more complex disabilities, to swim.

This took years of persistence and patience, fueled by Emily's hatred of preventable drowning. Try and fail. Try and fail. Pool one and two. Teacher five and six. Again and again. Money spent and lost - more than many could afford. Private and group. Family practice.

After years of this they could swim enough. After that it was improvement. #1, if he were motivated, could be competitive in butterfly -- a stroke I can't do. (I'm a strong swimmer.)

#2 just passed his "pre-lifeguard" course.

You never know.

Autistic "swingers" should consider inline skating

I touched on inline skating in a previous post about exercise for the autistic teen, but after a recent skate with #2 I think it deserves a post of its own. To explain why, I’m going to start with a novel way to divide up the “autism” world.

There are lots of ways to name and classify variant minds, and most of them are headed for the trash heap. In that context I think we’re free to name our own. So today I’m going to divide the world of non-adaptive [1] variant minds into swingers and unswingers.

Swingers are the autism-spectrum teens and adults who love to swing. They are the teens who tear apart the Rainbow play sets built for children [2]. Unswingers may share the legally useful diagnosis of “autism”, but they have no interest in rhythmic motion.

Swinger and unswinger autism isn’t a typical diagnostic divide, but I suspect it’s a useful division — with implications for health and behavior. We have kids on both sides of that divide — one swinger and one unswinger.

Which brings me back to inline skating. #1, the unswinger, has no interesting in inline skating outdoors. He can’t explain his feelings verbally, but my guess is he considers it dangerous and uninteresting.

On the other hand #2 is a swinger, and inline skating is one of the few outdoor activities he clearly enjoys. Cross-country (nordic) skiing is another one. In both cases, but especially with inline skating, there’s a rhythmic motion of core muscles and a sensation of falling and rising, floating and flying. In other words, a swinging sensation.

#2 has the typical motor coordination problems of Asperger’s syndrome, but he’s a strong swinger — and an increasingly strong inline skater. His technique is still weak, but over many years it’s slowly getting better. More significantly, he’s comfortable over urban streets and sidewalks — terrain that defeats many stronger inline skaters [3]. He’s generally not tolerant of scrapes and falls, but he shrugs them off when skating [4].

I don’t know of any other summer activity that has the rhythmic rise and fall of the swing. So for swinger-positive teens, and with recognition that anything out of the basement is risky, I recommend a look at inline skating. With, it should not need to be mentioned, wrist guards and a very good helmet that should be replaced every 3-5 years and with ANY head impact. [5]

[1] Non-adaptive, meaning not competitive in our current environment, an environment that requires a high degree of emotional control, cognitive flexibility, and social interaction. In this environment it’s not only “autistic” minds that are disadvantaged.

[2] I’m working on reinforcing the existing structure so it will withstand #2’s adult wait and swinging style.

[3] It’s a bit surprising how many club skaters, who can be very fast on smooth trails, do poorly on urban landscapes. 

[4] There’s a reason that inline skating is not as popular as it was when boomers were younger. It’s a contact sport. I’m a strong inline skater, and every few years I find a way to fall.

[5] I wear a helmet when bicycling, but I recognize there are valid arguments that for some people, in some conditions, the benefit of a bicycle helmet is less than I would have thought. With inline skating I am as certain as death and taxes that a helmet is beneficial and wrist guards are very helpful. With any non-trivial impact the helmet needs to be replaced — like air bags helmets are single use devices. They should also be discarded after 3-5 years even when pristine — they compressive material degrades with time and sunlight.

Special needs update Sept 2013: High School again

Quick notes that might be of interest to caregivers ...

• #2 son ("aspergers", college-bound, grade 9) has started high school at a local teache-run project-based granola-heavy charter school program. This will be an interesting experiment. Our primary concern will be college requirements and getting passable scores on college entry exams. 
• #1 son (various, not college, grade 11) did quite well over the summer learning Algebra via DragonBox. He's excited about his Algebra 1 text; he does better at algebra than he did with arithmetic. It's a relief to have him finally "allowed" to use a calculator and forget trying to do long division. He's also (finally) doing "shop" (mechanical skills are deeply unfashionable in American high schools) and is very keen on that as well -- and he's learning useful skills.
• We've made fantastic progress in social acceptance and support of the neuro-atypical over the past forty years, but we're still in early days with "gender relationships". That will the frontier over the next twenty years, then we'll tackle senior issues ...
• Managing #1 son as an almost 17 yo is much easier than managing him as a 4-5 yo. He used to only respond to positive feedback, which is like rowing a boat with one oar. Now he has some understanding of consequences and of the near future, so we have one and a half oars. On the other hand, the stakes are far higher, the quirks more complex, and the cost of mistakes far greater. At least we're holding our ground though.
• #1 son did pretty well at his summer "job" working with horses at a (jewish) summer camp. That camp has been good to our (gentile) family.
• #1's high school is hell bent on serving the elite white community (see this, this and this), which means it's competing with academic-strict white charter schools. Big focus on strict grades, no retakes, etc. On the other hand, his teachers seems an experienced and sensible group -- including the brilliant one who is going on maternity leave (shouldn't be allowed -- just bring baby to class :-).
• St Paul schools have realized that their systems for net filtering and use controls are completely broken [1]. Their response is to edge towards a "zero tolerance" policy of net misuse. This will be a problem for quite a few teenage boys, but it's an almost impossible problem for teenage boys with substantial frontal lobe dysfunction. On the other hand #1s stealth is astounding [2] and his special ed teachers scoff at the written policy. So we'll track this.
• Along the lines of Come a long way we recently competed the St Paul Classic. We toured the route by car a week before the event, and we've done portions of it many times, but it still went remarkably well. #1 easily completed the 30 mile route, and was a safer and wiser rider than every other teen and 80% of the adults.

[1] I completely sympathize - there is literally no way to fight this without a LOT more help from Apple and Google -- neither of which show the slightest interest in helping parents or schools. This is especially true because the same technologies that protect us from hackers (and the NSA) also break old-tech filters. Ultimately though I blame parents -- who don't pressure Apple/Google to pay attention.

[2] HIs ability to cover his net tracks is a weird pseudo-savant feature akin to his freaky visual processing. These kinds of capabilities are why I remain unsure of his future limits.

Special Olympics Minnesota has a summer sports camp

We've always known of the great Special Olympics sports opportunities in the Twin Cities, but until this year we had too many other activities going on to participate. This year though #1 wanted to start playing tennis, and, as it turned out, Special Olympics was a great way for him to start (he won state in his division - gotta brag for him).

Despite his tennis participation we didn't know of  the basketball, tennis, flat football and bowling summer camp that just passed:

Summer Sports Camp | Special Olympics Minnesota

June 12-15, 2013

St. Olaf College, Northfield, MN

Training will be offered in the sports of basketball, bowling, flag football and tennis. The daily sports training will be complimented with afternoon and evening activities, which will include recreational sports (bocce, ultimate frisbee, volleyball, etc.), arts and crafts, bingo, a talent show, movie night, a dance, ALPs night, and many more fun activities.

$325 per camper; includes room and board, meals, facilities/training fees and camp T-shirt. (scholarships available)

We heard about this overnight camp from a MN Special Hockey Eagles teammate. The price must be heavily subsidized, and there are scholarships available.

The 2013 application isn't online any more, but I found a copy. In 2013 the application deadline was June 1.

Next year we're hoping to get several Eagles to attend. 

Minnesotans with developmental disabilities can get a lifetime free fishing license and a fifty cent Minnesota ID card

Exemptions and fishing licenses issued without a fee: Minnesota DNR: "Permanent angling license issued to any Minnesota resident over age 16 who is developmentally disabled ... Available only from the DNR License Center."

I paid $6 for my 16yo to get his teen license, but we'll probably do this when he's 18. 

When I picked up this year's license I realized it's time for #1 to start carrying a wallet with at least his school ID. He's not keen on this; I suspect he won't like the sensation. A think sports wallet, or even a clip, is probably our best bet. That wallet can include a reduced-fee Minnesota ID card ...

A reduced-fee Minnesota Identification Card (similar in appearance to a driver's license) can be obtained through the Department of Public Services, Driver's Vehicle Services, with a form signed by a doctor or social worker. The cost is only fifty cents.

I wonder if that cost was set in the 1950s.

The physician form is available here. The rules for getting a Minnesota ID card are here, sounds like #1 needs his passport, a school photo ID, and a parent.

Minneapolis and Loppet Foundation/Courage Center launch Adaptive Cross-Country Ski program

#1 and #2 have both become quite good XC skiers. It took some ingenuity to get there [1]. Now there's a new option to make winter more fun... (emphases mine):

Minneapolis Park & Recreation Board - Cross-Country Skiing:

... Adaptive Cross-Country Ski Program

The Minneapolis Park and Recreation Board is teaming up with the Loppet Foundation and Courage Center to offer an Adaptive Cross Country Ski Program for individuals with visual impairments, physical and/or developmental disabilities.

Athletes will be paired one-on-one with instructors trained by Courage Center, with sessions culminating with the Luminary Loppet candlelit ski, part of the City of Lakes Loppet Cross-Country Ski Festival.

... Five Thursday Sessions: Jan. 3, 10, 17, 24, 31, 6:30-8 p.m. (meet at the Wirth Par 3 building) Cost: $95, includes equipment, trail passes, coaching, and registration fee for the Luminary Loppet (with transportation to and from the event).

The authors omitted directions on how to sign up for this (oops), but see the update below..

See also:

• Minnesota Special Hockey: Minnesota has the world's largest special hockey program [2] for persons with cognitive disabilities -- including people who play on a sliding seat. #1 and #2 have played for about six years, we just started another season (Facebook: Eagles). Our latest challenge: players who, over the course of years, have developed to a rec league skill level.
• Sports and athletic participation for special needs students -- and all non-elite students: American school sport programs resemble American medicine -- great for the elite, otherwise not so hot.
• Adventures in special needs – A Nordic ski resort. This was ambitious.
• National Sports Center for the Disabled - summer and winter recreation in Winter Park, Colorado: Amazing program.
• Pushing the envelope does not always go well There are always risks.
• MSP Trails - Twin Cities Bike, Ski and Skate: Cross-country skiing and skijoring: Minnesota DNR excels
• Gordon's Notes: Nordic skiing: how to tow a kid (when you're starting out. I called this Skidadding. I wonder though about skijoring for special needs ski training ...)

[1] I've never fully documented the Machiavellian program I followed. #3 is neurotypical, and loves to do special things with her mother. So they did an intro class together. #2 (Asperger's) is not a natural skier, but he is fiercely competitive with #2. So we played on that to get  him to outrace her. That left #1, who is a natural athlete -- once we have Mom, #2 and #3 and skijoring dog on board he will naturally go along. It unfolded as planned.
[2] Largest in North America, and we don't think any other country has a larger program.

Update 12/28/2012

Some more information on how to register: contact "Nels Dyste; nels.dyste@CourageCenter.org".

Anthropology of the alien mind

As a neurotypical [1] parent of an atypical mind I often feel like a human anthropologist visiting an alien world. Sometimes I imagine I can understand #1's thinking, and sometimes I know I can't.

I know he has an IQ less than half of what I once had [2], but often he has insights I miss. He solves the world in a different way; usually a much inferior way, but sometimes his methods are better.

He can't explain them though; he can't translate his inner states and reasonings to verbal form, or even to an internal model of himself [3]. He can't tell me why he suddenly won't go to hockey practice because he doesn't know himself.

Perhaps he saw something disturbing on the long and twisty road to the distant arena. Maybe it's a joint practice, and there's someone on another team he wants to avoid. Maybe he's feeling anxious, and he wants to know that his father will enforce the rules and consequences he relies on. Rules he is, as yet, unable to internalize.

When the rules are applied, not for missing a practice, but for breaking a promise [4], he is not angry or sad. He is cheerful. He seems relieved. His guard rails are intact.

I am training for First Contact.

[1] More or less: What if we could see the diversity of minds?
[2] As I age we may yet converge!
[3] Arguably neither can "we", cognitive research has shown many of the mental-state stories we tell ourselves are false. They are often post-hoc explanations with little relationship to how we think.
[4] Hockey is important for many reasons, but most of all as a safe lab in which to learn the rules of adult life and of employment. 

Sports and athletic participation for special needs students -- and all non-elite students

Recently I reviewed the state of school-based athletic opportunities for special needs students (see also Special Hockey).

The benefits of athletic involvement are clear. They're the same as benefits for neurotypical students, only more so...

1. Kids who are physically active to their personal bounds are happier, sleep better, and are easier to work with.
2. We know the best way to boost a middle-aged brain is to exercise (forget crosswords, get up and walk!). There's good reason to think exercise is good for young brains too.
3. For many of our community team activities, from hockey to cross country running, is the best way to develop social skills and friendships.
4. For some special needs kids athletic activities can become a major part of their adult life -- indefinitely. (We have special hockey players in their 50s.)
5. Special needs kids are just as vulnerable to obesity problems as neurotypical kids.

 It's not easy to make this happen though. American schools are notorious for focusing on elite athletics, to the detriment of all non-elites. It's a big problem, but we can chip away at it.

One area we can manage better is the distinction between CI (cognitive impairment) and PI (physical impairment) events. in our school district kids with autism are technically excluded from PI events (in practice "fine motor deficit" can used to fudge the distinction), but CI options can be very limited even for low IQ autistic kids.

The CI/PI distinction is fuzzy. Many CI athletes have some physical disabilities, and most of the PI athletes I know have had at least a learning disorder. I suspect the division was created when Downs Syndrome was more common, and autism less common (or less recognized). We need to develop a more flexible approach.

Special Olympics has done a good job of adapting to changing demographics of special needs, but the schools might be a bit beyond the curve. On a smaller scale Special Hockey has managed to work with a wide range of both cognitive and physical disability -- all on one team!

In the near term I hope we can generate increased demand for activities from special needs parents, and provide more support for volunteer coaches and managers while learning from Special Olympics and Special Hockey. In the longer term I hope to see a kind of reverse- "inclusion" in special needs sports. What we learn from special needs school athletics may work well for all non-elite students.

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 Hockey

It's the start of another special hockey season in Minnesota. I've just reviewed the slideshow from tonight's game, and the teams look great.

Even after 6-7 years of it, I'm always a bit amazed that it works. The range of players is mind-boggling. One team has a (mercifully) gentle forward who's 6'8" - and all muscle. 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.

We have gentlemen players and we have ... well, actually, the range there is pretty limited. This is a good group of people; even my excitable #1 son is learning some manners.

There's been a lot of progress. Even players with significant motor disabilities often learn to skate. For my #1 it's a chance to have fun in a setting where he doesn't feel embarrassed or anxious or "other". He can play with neurotypical teams at school and community, but he can never truly be a part of the team. For #2 it's been an unequalled opportunity to learn flexibility, to live with mistakes, and to work as part of a team. Even, this year I think, to learn to lose gracefully.

There are many similar opportunities in Special Olympics, but for us this activity has worked extremely well. While #1 could quality for Special Olympics, he performs at a relatively high athletic level for the sports he likes (he may play SO Golf next year). I don't believe #2 would meet Special Olympics guidelines, yet Special Hockey has been enormously valuable for him.

It's a movement worth supporting.