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.

High school tips (grade 9)

We're about half-way through grade 9 for #1 son at a Twin Cities public high school. I'd grade the beginning as a 'C', but now we're probably B+.

These are somethings that have worked for us; things have gotten easier as my son learns the system and improves his organizational skills. B+ is pretty good considering the dire funding situations -- aides in particular are hard to find.

1. We really focus on his "Planner". Dad tries to review all kids planners every day. Stickers and credit for writing things down, especially when assignments are handed out and when they are due. It took about 1 week but now all use planner well.
2. We use his planner to communicate with his Aides. I think there's some benefit to this. In our school system we cannot contact an Aide directly.
3. Wrote 1 page dossier on him for teachers to read. They don't get much information on students.
4. We read the parent portal web site regularly. It's not great software, and I think the teachers struggle to make it work, but it's better than nothing.
5. His teachers do very well with email. Phones and meetings are a lost cause -- but email works very well. I didn't expect that, nice benefit.
6. In our IEP we requested gym every trimester. For our guy this is a big help. Physical activity helps him. We sacrificed Art and Technology (computer skills). The former is probably a lost cause, and the latter he gets at home.
7. We have a regular weekend slot for homework and a classmate/friend with somewhat similar disabilities joins him for this. I think this is helping both of them, it certainly helps my guy.
8. We are very aggressive on following up on missed assignments. The Parent Portal can help with this -- esp. prior to end of trimester it gets updated. We track down and do missing assignments.
9. I am surprised that he can do simple algebra and his basic physics equations. I didn't expect that. He does get help from an aide there, but he's still writing out the expressions and completing many of them. I think his science teacher feels we're exaggerating his disabilities.
10. His history teacher is relatively demanding, which is working well. Of course he's not evaluated at grade level, but to get a B he has to actually work. If he doesn't work, gets a D. This is a good opportunity to push his cognitive limits. It's a fight of course, he wants to scrawl some illegible roughly related words and move on. Even so, it's not that BIG a fight. For this class I review the topics myself, translate them into diagrams and notes that are very close to answering his study unit questions, then give him those to interpret. I think he's picking up some history, but mostly he's learning to read, interpret and write. (I'm also picking up some history. His "World History" class is light years better than what I had. (I've studied quite a bit of history since, but there's a lot to be said for a grade 9 level overview!)
11. He's done very well with adaptive sports and we continue to sign him up for those. He also does mainstream sports teams, so there's some push and pull there. Either way - real value.

Aspergers and crying: maybe not a career killer

We're proud and happy with how boy #2 is doing in middle school. Teachers pleased, good grades, he seems happy to go to school. Still has trouble crying though. I think of it as an Aspergers trait; he cries when he's frustrated or upset.

I also think of it as significant career handicap. Maybe I'm overstating things ...

Why xxxx cried

... xxxx cried over just about everything. He cried at the beginning of Apple after Woz's father pushed his son to take more ownership of the company because he thought xxxx wasn't doing much work. xxxx went over to Woz's home and bawled his eyes out. Woz kept him on.

xxxx cried when his employee badge said #2 instead of #1 (which went to Woz), then ended up getting badge #0. He cried when Apple pushed him out of the company. He cried at Pixar during a battle with Disney. He cried when Time put the Mac on its cover instead of him. He cried when he saw the famous Apple "1984" ad for the first time. He cried about Windows "copying" the Mac. He cried over design questions, like when the iMac team put a tray-based CD drive in the machine rather than a slot-loading drive. He cried over deep issues of personal privacy, such as the moment his cancer first became public and shareholders were braying for information. He cried because he wanted the original Apple II to have a one-year warranty, rather than 90 days...

Of course xxxx was Steve Jobs.

So evidently a crying problem need not be a career killer.

As to whether this hypersensitive obsessively detail oriented creative with supreme synthetic skills and narrow interests had other Aspergers traits ...

Information wants to be licensed?

We're always on the lookout for new therapeutic interventions, particularly behavioral interventions for our guys.

Since we're physicians, we're used to finding those interventions in handbooks, manuals and the like. Knowledge that comes with a creation history, but that is public.

Of course even in medicine that's not quite true. I've always been struck by how little ophthalmology, for example, is actually written down. Yes, there are lot of ophthalmology textbooks, but they seem to leave out a lot of the actual practice of eye care. Orthopedics was the same way. General medicine had the best public coverage.

In the 1980s medical-process patents began to appear in clinical practice [1], though, surprisingly, Congress actually moved to limit their impact in 1996. In Nursing care several "instruments" are owned by publishing companies and cannot be used without license.

There are similar issues in science, particularly in genomic research. The "iceman" (Otzi) genome is still a carefully held sequence, worth fame and grants to its owners. Archeologists are infamous for restricting access to ancient documents (ex: Dead Sea Scrolls).

So in the worlds of science, engineering and medicine there's a spectrum of open knowledge.

We're discovering that much of behavioral therapy for autism tends towards the closed end of this spectrum; many programs are patented and unpublished.

I'm unsure how important this is. It may be that patented programs are not only "secret" but also unstudied. Idiosyncratic therapeutic interventions may be harmful or wasteful (in this world, since time is limited, wasteful is harmful). Perhaps we're better off not knowing what's in them.

On the other hand, secret knowledge is yet one more obstacle to information sharing in the cognitive disability community. It's a part of a bigger problem that's getting more of my attention...

[1] Link intentionally made to a NEJM restricted access article.

Adaptive textbooks for special needs learners

My #1 has two mainstream classes - science and history.

In the days of the lesser depression he is missing the aide service he needs to track the classes. I think we can work something out for science, but history is harder. His teacher loaned us a copy of his history text [1]; that was a bit of a trick since our increasingly impoverished schools no longer have textbooks for home use.

I find I can write a readable summary of a book chapter in about ten minutes. He can't read the chapter, but he can read my summary and use that to complete his homework.

I haven't been able to find anyone who has done something like this. I'm a bit surprised that

• teachers don't do this
• the state doesn't do this
• foundations don't do this

I'll be doing it. If there's interest leave a comment and I'll find a way to make my summaries available.

I did find a single essay by a doctoral student written in 2005 that included some relevant legal information ...

Digital Textbooks and Students with Special Needs - Jennifer Courduff = Teachinghistory.org

For teachers, digital textbooks provide assistive technology in compliance with the Individuals with Disabilities in Education Act (IDEA, 2004). This law requires that assistive technology resources be made available to all persons with disabilities and provides funding to make these resources possible. In addition, Public Law 100-407, the Technology-Related Assistance for Individuals with Disabilities Act, requires that all students who are exceptional receive technology resources that support access to grade-level appropriate content...

... Digital textbooks are being developed using a universal design for learning (UDL) approach. UDL strategies do not water down content. Rather, complex content is presented using simpler language with supportive hyperlinks to definitions of cognitively difficult key vocabulary and concepts. Following UDL strategies, core content can be scaffolded to meet the cognitive levels of individual learners (1). Scaffolding content enables students with special needs to learn grade-level content within their zone of proximal development, thus providing content that is easy to understand while remaining aligned with curriculum standards (2)...

Personally I have no problem with "watering down" content. I do that every time I present my work to graduate students or senior vice-presidents.

The "UDL" material sounds interesting, but from what I can tell this is an aspirational academic enterprise. Nobody is actually making a UDL textbook of history for my son to use.

Guess it's just what I write then.

[1] Prentice Hall, World History, Connections Today.

Update 10/21/2011: I'm publishing my custom version of World History as I write it. You can get the latest version here, but it's being updated every week or so. No rights reserved.

High School: don't assume staff actually communicate

#1 is now in High School. He seems to like it and we're proud of what he is doing. On the other hand, the school is short resources.

That's not a surprise. The lesser depression has been persistent. We were a bit surprised to learn, however, that at least one of his mainstream teachers didn't know much about his disabilities -- or even that he had an IEP.

We shouldn't have been surprised though. We're physicians, and we know docs have trouble communicating about patient care. I used to tell my patients to always copy notes and results and hand carry them between caregivers. It was by far the safest way to pass information.

So we've drafted a summary of #1 and sent it to all his teachers. Now they know a bit of his story, what his disabilities are, what he likes, what works best, etc. Seems to be helpful.

That leaves his aide(s). (Supposed to be plural, but it looks like he's got about 1/3 of an aide in 1 class.) Schools, for reasons I can guess at, make it very hard for parents to communicate with aides. Everything is supposed to go through the (overloaded) teacher.

There's a fix though. My son carries a "planner". We've started using that to pass messages to his aides through him. They write notes in the planner -- such as the assignments #1 invariably "forgets". (One advantage of a defective memory subsystem is that "forgetting" is an awfully convenient excuse.) Old paper and ink technology goes where email can't.

Update: Things get better.

No credit

#2, Aspergers, wails and berates me for half the ride. Kind people glare at me. I am the worst father.

Then he climbs the big hill. He finishes it all. He is proud, happy. He will always remember this. He will remember how he showed his doubting father. It will empower him.

I will be forgiven.

No credit though.

Only satisfaction.

Guanfacine (Tenex) and working memory

#1 takes both Ritalin and Guanfacine (Tenex and other trade names) - longterm. So I track research on both meds.

Ritalin is as well understood as any brain med. As best we can tell it's unreasonably safe and effective for ADHD, despite a trashy article in a pop science magazine.

Guanfacine, a second line med for ADHD also used (off label) for "explosive" kids, is much less studied than Ritalin. The proposed mechanisms of action are interesting, it seems to increase certain kinds of neuronal connections and to perhaps facilitate learning capabilities.

On the one hand, this is encouraging. Working memory deficits are a significant component of most developmental disorders of the brain. On the other, it's disturbing. When clinicians hear "increased cellular activity" in brains we think "cancer" and "seizure".

Fortunately, so far, there's no sign of that (though we're in early days). There is, however, continued research on Guanfacine's effect on working memory and task performance in primates. Studies have recently moved to using elderly primates, but results are mixed. As best I can tell from the abstract, this was a negative result (A typical child dose of Guanfacine would be .04 mg/kg) ...

Effects of the alpha-2 adrenoceptor agonist g... [Eur J Neurosci. 2011] - PubMed - NCBI

Alpha-2 adrenergic receptors are potential targets for ameliorating cognitive deficits associated with aging as well as certain pathologies such as attention deficit disorder, schizophrenia and Parkinson's disease. Although the alpha-2 agonist guanfacine has been reported to improve working memory in aged primates, it has been difficult to assess the extent to which these improvements may be related to drug effects on attention and/or memory processes involved in task performance. The present study investigated effects of guanfacine on specific attention and memory tasks in aged monkeys.

Four Rhesus monkeys (18-21 years old) performed a sustained attention (continuous performance) task and spatial working memory task (self-ordered spatial search) that has minimal demands on attention. Effects of a low (0.0015 mg/kg) and high (0.5 mg/kg) dose of gunafacine were examined. Low-dose guanfacine improved performance on the attention task [i.e. decreased omission errors by 50.8 ± 4.3% (P = 0.001) without an effect on commission errors] but failed to improve performance on the spatial working memory task. The high dose of guanfacine had no effects on either task. Guanfacine may have a preferential effect on some aspects of attention in normal aged monkeys and in doing so may also improve performance on other tasks, including some working memory tasks that have relatively high attention demands.

The doses are interesting here -- much lower than a human therapeutic dose and much higher. They were also looking at a one time dose effect. This reads like a mini-pub as a research team gears up for the real research. It's a modest investigation, and they basically didn't find anything. (Give the cost and ethics of primate experimentation one assumes there's much more to come.)

So the results are pretty meaningless. What's interesting is that the research is gearing up.

We should learn a lot more about the risks and benefits of Guanfacine over the next five years. For now I'm comfortable with our son's use of this medication.

The unpredictable upside

Spin type school combination locks have never worked. It didn't help that #1 liked the idea of a key. Alas, despite his remarkable reliability with his phone, he kept losing keys.

This year he likes keys less. It's part of not wanting to be different, which is both unfortunate (he is different) and another powerful behavioral lever.

So I geared up to again try to teach him the spin lock for school use. I drafted a table with directions on the left, drew the spin direction, and did the combination in large font in a separate column. Working to separate the idea of the common actions from the unique combination.

Next came the question of incentive. This is an anxiety producing activity coming from his father. He does very little of this nature without a short term reward. Computer time alone was not enough. He wanted a MacBook Air. We compromised with an account on my Air -- a machine that he's lusted to touch and that has been mine alone.

He did it in one. Then he did it again.

I can predict what my neurotypical child can and can't do. I can't predict him.

Adolescent special needs - the epic trip

35 friends and relatives across five sites. Two provinces and 7 states. More than 3,300 miles of driving. It was an epic family car trip.

A car trip with 1 dog, 1 neurotypical child, and two boys on the spectrum. Two boys, and two hormone wracked adolescent.

It was a great holiday. We had no need of a lawyer, a physician, a veterinarian, a mechanic or a psychiatrist.

So it can be done, assuming one is a special needs veteran and accustomed to crises that might topple a regular parent. The mixture of motion, of car time and time limited but intense visits seems to work for our guys. It's not something I remember from the days I read parenting texts, but we're data driven. We go with what works.

The trip is an opportunity to reflect on the autistic adolescent. On the one hand, the desires are intense, and there's a complex mixture of the adult and the child. On the other hand, intense desires are also opportunities for the Machiavellian parent (as we must be). They give us new challenges, and new levers.

More problematically, behaviors that could be ignored in a fresh faced child are more sensitive in a strong jawed neo-adult who needs to start shaving. Punching was never acceptable, but now it's dangerous.

The upside is that we're seeing an overall improvement in most behaviors. I don't know why that is. Maybe it's just practice, but I'm hoping his brain is better able to sequence events, to connect action with reaction, and perhaps even to anticipate consequences, to be able to plan towards an end. The improvements, at this time, are pulling ahead of the downsides of adolescence.

Only 80 years to go now ...