Tuesday, December 25, 2012

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:

[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".

Sunday, December 23, 2012

Special education vs. standards based grading: What are grades for?

We've been struggling with some of #1's 10th grade teachers for about 8 weeks now.

The problem seems to be related to his school's transition to "standards based grading", though I am sure there are other contributing factors. New teachers, for example, don't have much training in adaptation vs. modification, and several of his teachers are relatively new. Experienced teachers learn this over time.

This seems to be a fairly simple problem, so I was initially surprised how slow progress has been.

I was surprised, that is, until I remembered my general rule "Everything in education maps onto health care". When I remembered that rule, I understood. I know secondary education only as a special needs parent and a medical school professor, but I know American health care and medicine very well.

I know how dysfunctional even the best health care systems are, and I know American health care is far from the best. I also know that most physicians only understand a part of what's broken, and that almost none understand why simple things seem not to happen [1]. So I can't blame educators for struggling to understand; like physicians they have too much going on, and the system is broken in too many ways.

If we ever did have a meeting of minds on modification and grading for non-degree students, I'd like it to be based on reviewing and expanding this simple table, a summary of the utility of grades for diplomate and non-diplomate students.

Mandate (system) Yes Yes
Work incentive Yes Yes
Teacher evaluation Yes Yes
Guide instruction Yes Yes
Certification Yes No
Streaming Yes No
Post-grad triage Yes No

The last three, to us at least, are the key.

Non-diplomate students grades are not being certified as "high school" graduates. They aren't being streamed for advanced pre-graduation opportunities. They aren't being triaged into community college, state college or elite college tracks or scholarship eligibility.

Once one understands what grades are used for, it should be easy to discuss how to manage grade adaptation. For example, a grade record of all D with the occasional C doesn't fit this framework.

In the meantime, we'll continue the time consuming process of meetings upon meetings. We seem to make progress through meeting-induced exhaustion; it's a process few parents can afford.

See also:

Update 1/13/2013
We're not going to win this battle. The lesson is we can work with teacher problems, and we can work with system problems, but we can't work with both system and teacher problems.
Update 3/6/2013
Contrary to what I thought two months ago, and thanks to L's patience and persistence and hard work at many levels of the school, we actually reached a reasonable detente. This has involved a mixture of arbitrary grade increases, more appropriate grading of his work, and increased flexibility in assignments. I don't think there was ever a dramatic understanding, more gradual acceptance.

- fn -

[1] My personal pick for most obscure and under-appreciated micro level contributor to US health care failure -- the 1990s transition to "CPT E&M" based accounting mechanisms. Just one among many causes, but not one physician in a thousand understands what that did. At a macro level, Baumol's Disease afflicts both health care and education. Another micro-cause - physicians don't understand why their health record software is so bad.

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. 

Sunday, December 16, 2012

Special needs and psychosis: living with uncertainty

A NYT story of psychosis following developmental delay recalls Andrew's story (emphases mine)...

Providing Comfort When a Cure Is Out of Reach - Tara Ebrahimi - NYTimes.com

... Although Takkin had been found to have development delay and fairly severe A.D.H.D. at a young age, he had managed to lead a “normal” life well into his teenage years. He stayed in the school system for as long as he could, participating in work and life-skills programs. He was doing data entry at the airport and held a steady part-time job as a greeter at Trader Joe’s.

His situation was complex, as is often the case for people who fall into the gray space between severe intellectual disability and borderline development delay. He knew he was different from others in their early 20s, recognized that he didn’t really have any friends and that he would never go to college as his two older siblings had. He wanted nothing more than to get his driver’s license. But he was happy at times, especially when he was socializing.

Then he had the dental surgeries, and it was as if a switch in him had been flipped. After a series of root-canal procedures and teeth extractions, he woke up from his final round of procedures and anesthesia, and was never the same...

... we began seeking psychiatric help for what eventually would be referred to as Takkin’s “psychosis” and “delusional thinking.”...

... he was already in the social services system, which in our state consisted of a labyrinthine series of hoops and hurdles and bureaucratic insanity that not even the most educated and competent can easily navigate...

... I came up with a plan of action. And then another when the first plan failed. And another when the second plan failed...

... I drove to the emergency room, where we waited eight hours for him to be admitted to the psychiatric ward...

... it was time for Takkin to leave the psychiatric ward for an outpatient home ... I called a dozen times a day and could never get a response on the status of his anticipated stay, so he never went....

... he was released from the psychiatric ward into my custody, I was unable to reach his case manager at the hospital despite my constant phone calls, e-mails and voice messages, which were alternately kind, threatening and pleading...

Tara tells a story of psychosis developing after low IQ/ADHD cognitive disorder, Andrew's story tells of psychosis developing after Asperger's/autism. Adam's story may add to this tragic set. We have no idea how often this happens; that's just one of the failures of modern mental health research [1].

Tara also describes the disaster of American mental health care. That story has been told before. Recently some have suggested taxing bullets to drive a renaissance in mental health care. We could hardly do worse than we do now.

For us these stories are  personal. Our #1 son resembles the young Takkin. He lives in the "gray space", -- he has severe ADHD, cognitive disabilities, and the usual range of essential but near meaningless diagnostic labels. Will he, like Takkin and Andrew, develop a psychotic disorder over the next seven years? Does he, in a sense, have only a few relatively good years left?

We look at him, and we see features of an unnamed syndrome that continues to play out. We see uncoordinated growth, as though his cells were a mosaic of developmental clocks. Small feet, short legs, persistent  mandibular growth after maxillary has stopped. He too will need dental surgery.

There is something we cannot name that is ongoing. We assume the same process will continue to affect his brain development over at least the next decade.

How do we live with this? How do other parents of children with short lifespans or degenerative neurologic disorders live?

We live in the moment and in the past. We take photographs of good times. We spend our time and our money to have good experiences for him now, because his future is grimmer than most. Not hopeless, but not particularly hopeful.

We don't spend our time looking for a fix or a cure. We are decades from being able to fix this type of problem. Maybe centuries. Better to spend the time we have building memories.

Being the best we can be.

- fn -

[1] While we known almost nothing of natural history or epidemiology of psychosis with developmental disorders, we have hints like this preprint.

Emphases mine, the research community suspects that our definitions of "autism" and "schizophrenia" are at best incomplete, at worst completely misleading. This knowledge has not made its way into the general psychiatric community.

Expression of autism spectrum and schizophreni... [Schizophr Res. 2012] - PubMed - NCBI

Copy number variants (CNVs) associated with neuropsychiatric disorders are increasingly being identified. While the initial reports were relatively specific, i.e. implicating vulnerability for a particular neuropsychiatric disorder, subsequent studies suggested that most of these CNVs can increase the risk for more than one neuropsychiatric disorder. Possibly, the different neuropsychiatric phenotypes associated with a single genetic variant are really distinct phenomena, indicating pleiotropy. Alternatively, seemingly different disorders could represent the same phenotype observed at different developmental stages or the same underlying pathogenesis with different phenotypic expressions.

... ASD and schizophrenia associated with 22q11.2DS should be regarded as two unrelated, distinct phenotypic manifestations, consistent with true neuropsychiatric pleiotropy...

In this particular small study with a particular autism-spectrum-related genotype, the incidence of psychosis resembled the general population.

I have created an RSS Feed to track research on the relationship between developmental disorders and psychosis.

Tuesday, December 11, 2012

Minnesota's state mandated child abuse: standardized testing of special needs students.

This is madness. I have a post pending about the struggles we've had with grading and our non-degree-candidate #1 son; this news story hits on a related topic:

When tests tell teachers nothing: Special needs not met by standardized tests | Twin Cities Daily Planet

...  teacher Rachel Peulen spends two to three weeks administering a test that she knows will tell her next to nothing about her students.

On most days, Peulen’s middle schoolers each work on activities designed to meet their particular needs. One student works on remembering classmates’ names. Another practices recognizing flashcards inscribed with simple words. Her most advanced students do simple arithmetic...

... But over three weeks, Peulen takes each student out of the classroom for up to an hour-and-a-half, so she can ask them to compare fractions, find the slope of a line and identify the main idea of a story. With no additional staff to assist her, paraprofessionals take over the class...

These tests are the equivalent of scoring a paraplegic on their long jump ability.

I hope Nolan Murphy was misquoted here, because he doesn't come across very well...

Minneapolis Public schools’ lead teacher for developmental and cognitive disabilities programs, Nolan Murphy, said some good has come out of testing students with disabilities: more than ever, special education teachers are aligning their lessons with those of their grade-level general education peers.

It's worse than madness, it's pointless cruelty. As a physician I'm legally mandated to report suspected child abuse. So where do I report the State of Minnesota?