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".

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.

Reason	Diplomate	Non-diplomate
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:

• Adaptation versus Modification: Critical code words in understanding K12 special education. (plus Settings)
• Special education vs. standards based grading: I think we have a problem
• Minnesota's state mandated child abuse: standardized testing of special needs students.
• Senior High School and the adaptation problem

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. 

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.

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?

Asperger's syndrome and depression

Adolescence is a time for new adventures -- such as depression. It's not clear whether depression is more common in person's with Asperger's syndrome, but since depression is associated with stressful life events it would be surprising if it were not associated with high-function autism spectrum disorder.

As of Nov 2012 there is no useful academic research on the management of depression in the context of autism syndromes at any age. There's no  We do wonder sometimes where all the NIH autism syndrome money is going.

I found two somewhat useful references:

• UK Asperger's Foundation: Depression or mental health in Asperger's Syndrome (discusses other mental health disorders but focuses on depression)
• Autism, PDD-NOS & Asperger's fact sheets | Coping with depression as an adult on the autism spectrum

Physicians used to be taught that there was a clear line between "pathological" depression and the "normal dysphoria" of life in an often difficult world. I was never convinced by that argument. I'm not sure there's even a very sharp line between non-psychotic and psychotic depression -- though that transition is relatively clear. That line is probably even harder to spot in persons with stressful disabilities such as Asperger's. The focus then is on decreasing ability to perform activities of daily living, such as school work. The fear, of course, is suicide.

It's not hard to find semi-scholarly articles claiming that suicide rates are increased with Asperger's syndrome, but even there we see caveats (emphases mine):

... An increased risk of suicide is observed in persons with Asperger syndrome, with risks possibly rising in proportion to the number and severity of comorbid maladies...

In other words we don't know. My own suspicion is that we'll find:

• cognitive-behavioral therapy is useful
• decrease academic stress
• cautious use of antidepressants -- notoriously tricky in adolescents. May prefer to avoid SSRIs.

Special education vs. standards based grading: I think we have a problem

Number one reads and writes at a 3rd-4th grade level. Lately, at age 15, his handwriting has become fairly legible.

We're proud of him. I didn't think he'd learn to read or write at all. it has been a long road with a lot of help from teachers, aides and, yeah, his parents.

Now, as a non-diplomate Setting II student with modifications, he's straining his brain to label mitochondria and endoplasmic reticulum while answering questions about demographic transitions. It's probably not the best use of his time, but he seems to enjoy the work and it's good practice for his reading and writing skills, and even for his very (very) short term IQ 60 verbal memory. We're proud of that too. 'A' work by our standards.

Not by the current standards of his mainstream teachers though. He's getting C- or Fail grades -- despite his IEP. At least one teacher feels this is appropriate since he's "minimally meeting expectations".

Yes, we have a problem.

It's not a new problem. It amazes me how many of his teachers have been unable to read an IEP, and how many seem to lack any low IQ experience. Usually this responds to some education and orientation, but things have been getting worse over the past two years. I think part of the problem is that his school is moving to a recent educational fashion: 'standards based grading'...

Educational Leadership:Expecting Excellence:Seven Reasons for Standards-Based Grading Patricia L. Scriffiny

... standards-based grading, which involves measuring students' proficiency on well-defined course objectives (Tomlinson & McTighe, 2006). Although many districts adopt standards-based grading in addition to traditional grades, standards-based grading can and should replace traditional point-based grades....

... 

An A means the student has completed proficient work on all course objectives and advanced work on some objectives.
A B means the student has completed proficient work on all course objectives.
A C means the student has completed proficient work on the most important objectives, although not on all objectives. The student can continue to the next course.
A D means the student has completed proficient work on at least one-half of the course objectives but is missing some important objectives and is at significant risk of failing the next course in the sequence. The student should repeat the course if it is a prerequisite for another course.
An F means the student has completed proficient work on fewer than one-half of the course objectives and cannot successfully complete the next course in sequence....

...

Students who struggle can continue to retest and use alternate assessments until they show proficiency, and they are not penalized for needing extended time. I guide students with special needs to modify their work and, if needed, develop different ways of demonstrating that they've met their proficiency goals. Their working styles can be easily accommodated in this system because modified assignments and assessments require no special adjustments in the grade book. The grade book simply shows where they are in meeting the standards, without reference to how they are demonstrating their learning or what modifications needed to be made....

I wonder what Ms. Scriffiny means by 'meeting the standards'. Does she mean the unadjusted course objectives, or does she mean adjusted standards? Her meaning is unclear, and that is the crux of the question. Other articles I've found on 'standards based grading' suggest that grades for non-diplomate Setting II students are problematic.

This really isn't a complex problem. There are two ways to think about this, and they both lead to the same outcomes.

One approach is to adjust the goals, and then grade on the adjusted goals. This is an excellent approach, though it requires some thought and help to formulate goals and modifications. That can be a problem. 

There's also a budget approach. Start by asking what purpose grades serve for both mainstream (diplomate) students and corporate executives. They motivate work, they measure teacher or manager quality [1], and they are used to stream students and employees along different paths including promotion, lateral moves (from physics to biology for example), and termination. 

In that context a fixed standard makes sense. But number one is not going to graduate from High School. He is not going to go Michigan State University (his current dream). He is probably not going to have unsubsidized employment. He will probably never live independently. There is no point in streaming him, because he is not in the water. He was beached at birth. For him grades serve only two purposes - they can incent him or they can demoralize him

At the moment, his teachers seem to working on the second mission. Our job is to try to change that, working with both teachers and school leadership. Failing that, our job is to find him a better learning environment.

[1] Alas, both corporations and classrooms are prone to the stack-ranking disease.

See also:

• Be the Best You can Be: Adaptation versus Modification: Critical code words in understanding K12 special education. (plus Settings) 10/2012
• Be the Best You can Be: Senior High School and the adaptation problem 10/2012

Update: A valued advisor of mine suggests this language be added to the IEP. It says to the teacher, "STOP.... you can't grade the way you normally do."

The case manager may reduce course assignments in number, length, content or weight. Alternative assignments need to be arranged between case manager and teacher.

Grading Modification:

Grading may be based on a student’s personal effort in consideration of the student’s own skills/strengths and disability. Casemanager will help determine appropriate grading. Factors such as attendance, class participation, or other appropriate measures should be used to determine a grade if necessary.
Student should not be graded based on meeting the course requirements set for non-disabled peers. Instead, grading should be based on ...

Adaptation versus Modification: Critical code words in understanding K12 special education. (plus Settings)

Every discipline has its own special language, and special education is no exception. Common words, like 'accommodation', 'adaptation' and 'modification' can take on special meanings. After years of using these words, it may be surprising to learn that not everyone knows what they mean.

Certainly I was surprised to learn, after years of being a special education parent, that for some teachers there's a significant difference between 'adaptation' and 'modification' in special needs education, whereas for others the terms are synonymous. There appear to be local usage variations and it's not clear that regular education teachers, especially novice teachers, understand the distinctions as well as special education teachers.

From what I read the term accommodation is consistently used for relatively modest changes to education and examination. A student may have additional time to do an exam, or may hear questions rather than read them.

The term modification is usually used to refer to significant changes to a curriculum or testing process. My rewrite of a standard 9th text in World History to a 4th grade reading level would be considered a substantial modification. I believe in some locations the words "change in rubric" is used to mean modification.

The term adaptation is sometimes used as a synonym for 'accommodation', sometimes as a synonym for 'modification' and sometimes for something between the two. The meanings appear to be regional, but this British Columbia school district description matches what I hear from a Minneapolis Special Education teacher ...

Adapted and modified education programs

Adapted Program

This is a program that retains the learning outcomes of the prescribed (regular) curriculum but adaptations are provided so that student can participate in the program. Examples of adaptations include assigning a 'buddy' for note-taking, assigning fewer examples for practice, extending time for assignments and tests. Students on adapted programs are assessed using the provincial curriculum standards set out by the Ministry of Education.

Modified Program

This is a program in which the learning outcomes are substantially modified from the prescribed curriculum and specifically selected to meet the student's needs. Examples of modifications include the student being taught the same information as other students, but at a different level of complexity; or given a reduced assignment (e.g., fewer questions to answer); or the student uses a lower-level reading textbook. A student on a modified program is assessed in relation to the goals and objectives established in the student's IEP.A student's program could include some courses that are modified and others that are adapted.

Another BC document makes clear the practical distinction between adaptation and modification:

Although decisions about modifications to a student’s courses or subjects may take place in grades earlier than Grade 10, a formal decision that an overall program is modified does not need to occur until Grade 10.  The decision to provide modifications, particularly at the secondary school level, will result in students earning a School Completion Certificate upon leaving school rather than credits toward graduation ... 

As a parent of one special needs child who will not graduate from high school, and another who should graduate from college, I love the clarity of the Canadian (BC specifically) distinctions. Adapted means regular diploma, modified means no diploma. 

Knowing this, it's possible to squint hard at a No Child Left Behind document on adaptation vs. modification and spy the political subtext. There are big racial achievement gaps in American schools (Koreans do best), and the there's considerable pressure to do 'adaptations' rather than 'modifications' so more kids get diplomas and go to college. This may explain why some school districts appear to be emphasizing adaptations, and why there appears to be no money, and no market, for adapted modified textbooks. Without adapted modified textbooks, and with cuts to special education resources who can do modifications, we have the situation of my son's utterly incomprehensible college-level human geography text and his impossible biology exams.

Mainstream teachers don't have the time, and perhaps not the training, to do modifications, and it's absurd to think that a shrinking number of special education teachers can generate a unique modified textbook and curriculum for every student. Of course there's no reason someone like me couldn't do modified textbooks to be distributed nationwide, but that appears to be quite inconceivable.

See also

• Senior High School and the adaptation problem
• How a teacher can eliminate special needs students
• Mainstream special education - #1 did a ton of work in last year's world history class.
• Adaptive texts for Special Needs students - Human Geography
• Adaptive textbooks for special needs learners 10/2011

Update 10/22/2012: 

In the US the "Settings" concept is an important complement to the model of adaptation (diploma) and modification (no diploma). There are Levels of "settings":

• Setting I: less than 20% of time in special education setting
• Setting II: 20-60% of day in special education setting
• Setting III: more than 60% of day in special education setting

I suspect Setting I is consistent with Adaptations and a diploma, Setting III means modifications and no diploma and Setting II could go either way.

In the case of my #1 son he's currently in Setting II but might do well in Setting III. At this time, however, he strongly prefers Setting II. I suspect that our school has a limited capacity for Setting III, so Setting II is the only thing we've been offered. That could work well if there were resources to provide modifications for Setting II, and if mainstream teachers were keen to use those resources. Instead we've found our mainstream teachers claim to be completely unaware of how to do modifications; sometimes those claims are credible.

Adolescence on the spectrum: new obsessions, new challenges

Obsessive interests are often associated with Asperger's, but they're common to many cognitive disorders. This UK page has a good discussion ...

 Obsessions, repetitive behaviour and routines - | autism | Asperger syndrome

... People with an ASD have many different obsessions but some of the more common ones include computers, trains, historical dates or events, science, or particular TV programmes. Many younger children with an ASD like Thomas the Tank Engine, dinosaurs or particular cartoon characters. Sometimes, people develop obsessions with things like car registration numbers, bus or train timetables, postcodes, traffic lights, numbers, shapes or body parts such as feet or elbows.

People with an ASD may also become attached to objects (or parts of objects), such as toys, figurines or model cars - or more unusual objects like milk bottle tops, stones or shoes. An interest in collecting is also quite common: it might be Star Trek DVDs, travel brochures, insects, leaves or bus tickets....

Like most writing about Asperger's and ASD the focus is on childhood behavior. That suggests this problem improves during the teen years.

Maybe it does - for some. Or maybe it merges into the common obsessions of most teenage boys. For some reason we don't read many articles about the merger of adolescent hormones with obsessive dispositions. Still, some of these child-oriented management techniques may still be applicable in teens ...

... You could set limits in a number of ways depending which behaviour concerns you:

ration objects (eg can only carry five pebbles in pocket)
ration times (eg can watch Thomas the Tank Engine DVD for 20 minutes twice a day)
ration places (eg spinning only allowed at home).

... example of how to set limits.

Identify the repetitive behaviour, obsession or routine of concern. Jane likes to talk about train engines. Jane currently starts talking about train engines after about ten seconds of conversation for up to 15 minutes.

Think about reasonable limits you can put in place that your child can manage. Behavioural change is most likely to be successful and your child less likely to be distressed if you start small and go slowly. Jane is allowed to talk about train engines after 20 seconds of conversation for five minutes only. She is also getting social skills training.

Gradually increase time restrictions and introduce other limits. Jane is first allowed to talk about train engines three times a day. Then, Jane is only allowed to talk about train engines with her family three times a day. The eventual goal is for Jane to speak about train engines to her family only for one minute, twice a day.

If you place limits around obsessions or repetitive behaviour, you might need to think about things your child can do instead: perhaps joining a club or group; taking up a sport or leisure activity; or entering further education, job preparation training or employment if possible...

The last item is perhaps the most interesting. There seems to be a need for the autistic mind to focus on an anchor and return to it repeatedly. If one obsession is problematic, try to find another to take its place ...

Senior High School and the adaptation problem

American senior high school might be weak by world standards, but the topics are far above what I did 25 years ago. Consider these mainstream 10th grade "human geography" questions, based on a college freshman textbook that's too expensive to distribute to students:

1-NIR Map pg.54-What continent has the highest overall NIR rate-explain why you think that is?
2-TFR map pg.55-Why do you think North America has a TFR of under 2.1? (give one reason)
3-TFR map pg.55-Why might the TFR in Africa be so high, 4.0 or above for most countries (one reason)?
4-Babies born in sub-Saharan African countries can expect to live only into what age (life expectancy)?

Yeah, Houston, we have a problem. A problem for special needs students, and, I suspect, a problem for the 30-40% of the student body with an IQ under 100. This might explain something about drop out rates for neurotypical children.

Broader societal issues aside, there's a big adaptation challenge here. It's possible to create an adapted text, but it takes work to translate the topics and questions to a sub-80 IQ. Even if there's a parent willing and able to do the work, a teacher has understand how to manage adaptive grading within the framework of an IEP.

I said 'a teacher', because our school district recently shifted all adaptation responsibilities to teachers, while deprecating the role of special ed teachers. Our experience is that teachers aren't doing this.

We don't know why they're not doing the adaptions. Based on experience with medicine [1] and corporate life, we suspect the root cause is some mixture of lack of training, lack of experience, lack of local leadership, perverse incentives, lack of interest, and lack of time. In some cases teachers seem to think that minimum wage aides can manage the adaptations (surprise, they can't). Sometimes, as parents, we find ourselves training teachers on basic adaptation principals.

We probably can't fix the "perverse incentives" problem -- especially because we don't know what they are. Instead we need to find ways to put pressure on local principals, so they provide the leadership to address the training and incentive side of the problem.

[1] Almost everything that's true of medicine is also true of education - and vice-versa.

See also: 

• How a teacher can eliminate special needs students
• Mainstream special education - #1 did a ton of work in last year's world history class.
• Adaptive texts for Special Needs students - Human Geography
• Adaptive textbooks for special needs learners
• High school tips (grade 9)

Pushing the envelope does not always go well

Nine years ago a girl drowned in a Minneapolis lake.

That is a sorrowful story that is told many times in many places every year. This particular tragedy, however, had a twist ...

Michigan girl drowns in Minneapolis lake 7/19/2003

 ... A 7-year-old blind girl from Michigan drowned Friday night in Lake Calhoun in Minneapolis while she was swimming with fellow blind children. The girl was with a group of about a dozen visually impaired children from Blind Inc. in Minneapolis. They were off the north beach when lifeguards doing a safety check noticed her missing ...

She was pushing the envelope, doing something many blind people don't do. Sighted kids drown in lakes too, but her risk was above average.

Maybe her parents beat themselves up. Maybe some people thought they were careless parents. I don't know the details, but from my distance I wanted to say to them - forgive yourself. Disability means a full life is often riskier than average -- but all life is risky. None of us get out of this alive. Most us don't want to live in a padded room for as long as possible, we want the best life we can have. We take risks.

So today I took a risk. Nobody died, nobody was even hurt -- but it could have been worse. Seems only fair for me to share a story of an experiment that went off the rails a bit.

It began with a mountain bike outing to the new and superb Lebanon Hills trails. All three did well on the skills section; #1(ADHD, autism, anxiety, low IQ)  bopped through the intermediate stuff without blinking, and #2 (Asperger) was right behind 'em. So we set off on the green trail. #3 (neurotypical) was working through a bit of trail anxiety, so we fell behind the guys. 

So they got bored, and took off on the blue trail. Otherwise known as "the trail of tears", though I didn't learn that name until later.

#1 called to tell me he'd gone off, but I didn't know the trails that well and assumed he couldn't get that far. (I had scanned the trail map, but didn't notice the long, long blue trail on the section I'd studied). Back at the trailhead a cyclicst overheard me talking about the blue trail with #1, and, being a wise stranger, she butted into "my business" (joking there, I was grateful) and clued me in. Meanwhile #1 was getting anxious and agitated and had split from #2, and #2 had run out of mobile minutes while I was pinned down in the parking lot with #3. 

It looked like we were running out of options, but before I could plan the 911 call my helper called in her husband and his friend and they took off down the blue trail at full-rescue velocity. Got to the boys just as an increasingly agitated #1 was going to split for a roadway he could see in the distance. They were all back about twenty minutes later.

So, in the end, pushing the envelope turned out ok. The boys learned some valuable lessons about being lost like "stay together, don't split up" and "stop and stay on the trail" and "wait for Dad" and "if you're lost, choose a trustworthy looking stranger and ask for help" [1]. I learned that I should give #2 son the "tracer phone" [2] on mountain bike trips, and that I should have printed, labeled and distributed maps the night before the trip.

Next time we push the envelope, I hope we'll have a larger margin of error. Meanwhile, thank you Greater Mankata Multisport Club heroes!

[1] Yes, this sounds odd in the world of 'don't talk to strangers'. Surprise -- the risk of approaching a stranger for help is extremely low. The risks are when strangers approach unsolicited, especially in non-emergent situations.
[2] We have one kid phone with a data plan that can be a locator.

A lawyers guide to the high-evidence IEP process

IEPs and Evidence was written by Katie Kelly, a special needs lawyer and mother of two special needs children. It's a more adversarial approach than we've had to take - so far. I recommend reading the original and saving the document. For example:

Prior Written notice. ... The PWN is a procedural safeguard that makes the school put in writing the service or Individual Education Plan (IEP) term you asked for, the data they considered in refusing you that service, and their reason for doing so.  You will not get a copy at the meeting; it will be mailed to you.  It should be very specific.  Warning: the school will make it as vague as possible.  Tell them to do it again using the specifics that you got entered into the meeting notice...

She recomends recording all IEP meetings, optimizing formal minutes, using email to document and clarify all communications and actions, and dedicating a special journal to each IEP. The first two we haven't done and won't start doing until we see more trouble. Email and a special journal are easy to do anywhere.

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.

Mainstream special education - #1 did a ton of work in last year's world history class.

When I clean out the kid's notebooks I take photographs of selected writings and diagrams. I can't keep all their work, but I can keep the pictures. Today it was time to recycle my son's 9th grade world history notes. That's the course for which I wrote an adaptive textbook in world history, similar to the "human geography" text I'm writing now.

He did a ton of work. I hadn't remembered how much he did, but wow, he worked hard. (We worked hard!). He did that work despite a teacher who, like one of his current teachers, struggled with grading special needs students. If he'd felt encouraged, he would have done even more.

I struggle with this kid a lot. Sometimes things get hard -- and I have to find ways for the two of us to just have fun together [1]. In the midst of this struggle I can miss how much he does.

Yeah, I doubt he retained all that much about China's dynasties, but I think some of it's rattling around in his head. More importantly, he developed some more reading and organizational skills. He reads at a 3rd grade level -- but mainstream 3rd graders don't do the work he did.

Today, in the geography homework I made for him, he evaluated flight paths from Minneapolis to Beijing on a world map and a globe and then compared the results to the NWA web site. I swear I saw a light go off. Later I found our globe near his bedroom.

Mainstreaming is very hard, but it's not a bad thing.

[1] A round of 9 hole golf can go a long way (his sport, not mine). I can't be improving him all the time.

How a teacher can eliminate special needs students

In our schools there are two tracks, the 'gifted' and the other. The gifted track graduates will go on to college, sometimes to very competitive colleges. The standard track graduates are more variable. Some will become teachers and entrepreneurs, others will compete for the shrinking pool of blue collar jobs, and some will struggle in a world that has less and less need of the non-elite.

Special needs students are mainstreamed within those tracks. High IQ autism-spectrum kids may be in the gifted track and may graduate with honors. Low IQ special needs will be in the standard track but will not receive a high school diploma . We have one child in each category.

The standard track is obviously challenging for teachers. Among his or her students will be some gifted kids with quirky temperaments, many average kids, some kids with environmental issues, and the bottom 5th percentile. Some will be labeled "special needs", but in terms of performance and behavior those kids may overlap with the bottom 10 percent. If a special needs child doesn't have obvious physical signs of disability the overlap will be particularly difficult for the teacher.

So how does a teacher grade those students?

If she grades 'fairly' the special needs kids will get a zero on every assignment. So will the low IQ kids who haven't been labeled. If she adjusts grades according to effort there will be a lot of painful judgment calls and complaints. If she grades the special needs kids on their own curve they'll do far better than non-labeled low achievers, which demoralizes them.

In practice the better teachers divide kids into diploma and non-diploma candidates. They grade the non-diploma candidates roughly on effort, and the low achievers on a curve. Their reward for this work is to get more work.

There's an easy out for the teacher who wants less work though. Simply grade everyone fairly. Give the low IQ special needs students the same grade they'll get on Minnesota's special-needs-soul-crushing standardized tests - zero. After a little bit the special needs kids will give up. Their parents will campaign for a different teacher, or the child will get labeled 'EBD' and removed. It's a temptation some teachers can't resist, especially if they feel unfairly treated themselves.

Adaptive texts for Special Needs students - Human Geography

There are almost no adaptive texts for special needs students. This year my son's 10th grade human geography class is using a college text -- which his public school cannot afford to distribute.

Since there doesn't seem to be anything we can buy,  each year I pick one textbook to write. My goal is to help his reading, processing and writing skills. I try to pick a topic that is relatively meaningful to him.

I write the mini-text this by reading study guides and assignments then creating a text roughly at his reading level. I draw on the original texbook, my knowledge of the topics, and 

Last year I did 9th grade world history: http://www.faughnan.com/scans/History.pdf

This year I'm starting on 10th grade Human Geography: https://docs.google.com/document/d/1ruxWv2K0ZjfP8jFv124xV7K_i2yh_HW53D9yD6LBPTQ/edit#. (Not much there yet.)

I'm writing this mini-text using Google Docs which supports easy collaboration. So if anyone is interested in contributing please let me know (jgordon@kateva.org). 

I will probably order a copy of the text, that should help bring my notes inline with the "correct" answers. (Experienced students know the "right" answer is not the best current understanding, it's what's written in the text. This is true of both 10th grade geography and family medicine board exams.)

See also:

• Adaptive textbooks for special needs students
• Be the Best You can Be: Gates Foundation Shared Learning Collaborative - a special education angle? 2/2012
• Be the Best You can Be: High school tips (grade 9) 11/2011

Why transition services are a bit of a mess in many states

From HuffPo (emphases mine)

Special Education Services After High School Uncoordinated, Unmonitored, GAO Finds

... At a recent leadership conference for the Individuals with Disabilities Education Act, Melody Musgrove, director of the U.S Education Department's special education initiatives, said she wants to make services focus on the needs of students rather than the law's technical requirements, according to Education Week. While compliance has been key, the test scores of special ed students haven't improved. So the department decided in March that it would cancel expensive compliance visits to 16 states next school year.

Transitioning out of high school is part of that picture. The current compliance model looks at what students want to do after high school, but not what actually happens. A September 2011 report from the National Center for Special Education Research found that slightly over half of teenagers with disabilities pursued post-secondary education, compared with 62 percent of their peers.

Laura Kaloi, who directs public policy for the National Center for Learning Disabilities said transition planning can help get kids with disabilities on an equal footing with their peers.

As you can tell from the excerpt, the article is a bit choppy. That might just reflect the incoherence of the Federal effort. "Compliance has been key" and "cancel compliance visits"? Looks at what students want to do (play professional soccer) but not what happens (watch TV)?

More importantly, exactly how is any program going to put a young adult with an IQ of 65 on an "equal footing" with someone who has an IQ of 100?

I hope the incoherence is in the journalism, but I fear it's in the policy.

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.

Prevent vulnerable person fraud: AT&T mobile parental controls purchase blocker

Scammers love the vulnerable population. Elders of course, but also special needs. This month AT&T and BuneUS (Mblox) teamed up to put a $10/month charge on our mobile. I suspect my son responded to a text spam on his phone and thereby 'signed' a contract.

AT&T will reverse the charges -- but more importantly you can put a "purchase block" on all phones. It's a form of parental control. I put it on my phone too -- I want it for me as well as my son. It blocks everything -- so no accidental ring tone charges. Details here: Gordon's Notes: Crammed: Mblox $9.99 a month.

Gates Foundation Shared Learning Collaborative - a special education angle?

I came across the Shared Learning Collaborative (slcedu.org) while attending a conference in Silicon Valley. It's a Gates Foundation funded initiative to enhance American education by providing an open source framework for disseminating and evaluating educational interventions.

The conference was on analytics, so there the SLC representatives emphasized the process of gathering (anonymized) data on learners and interventions, with the goal of matching student traits to a large repository of traits and outcomes [2]. In the ideal world, the system provides a personalized education program. The vision reminded me of the training module in Neal Stephenson's The Diamond Age.

They're not thinking about special education, but of course when I hear "personalized learning strategies" the connection is painfully obvious. Whatever is developed for 'the bottom 10%' [1] is likely to overlap significantly with what our learners need. I'm particularly interested in lifelong learning and training for special education teens and adults; when you're fighting for every bit of freedom that's possible lifelong education takes on new meaning.

The SLC is in early startup phase. Normally I wouldn't track them at this point, but Gates Foundation money is a significant asset. I signed up to be notified of progress. The site doesn't mention this, but they have a twitter feed @slcedu.

-fn
[1] I suppose they could also be focusing on the top 10% who will work for Silicon Valley, but it's pretty clear that the Foundations interest is the bottom 30% of the student population -- the group that, as adults, will be shut out of the world economy. That group overlaps with our population.
[2] The same vision that has been a part of electronic health records since the 1970s.

Autism redefined - DSM 5 and the services dilemma

I've claimed frequently over the past six years that the diagnostic term "autism" is virtually meaningless. That doesn't mean this is entirely a good idea ...

New Definition of Autism May Exclude Many, Study Suggests - Benedict Carey - NYTimes.com

Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and might make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests...

... The definition is now being reassessed by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, the first major revision in 17 years. The D.S.M., as the manual is known, is the standard reference for mental disorders, driving research, treatment and insurance decisions. Most experts expect that the new manual will narrow the criteria for autism; the question is how sharply...

... Under the current criteria, a person can qualify for the diagnosis by exhibiting 6 or more of 12 behaviors; under the proposed definition, the person would have to exhibit 3 deficits in social interaction and communication and at least 2 repetitive behaviors, a much narrower menu...

Obviously, I agree with the DSM authors that the current definition of "autism" is not particularly useful. On the other hand, it's tied by law and legislation to a wide range of services and protections. So we need to be very careful about we replace it with. This is particularly important during our current era of slow economic growth, capture of that feeble growth by the most wealth Americans, and a rapidly aging population. There are ever more legitimate and powerful competitors for special needs funds; reclassification will be embraced as a big money saving opportunity.

To be sure, the fundamental problem is that "autism" gets special treatment over other brain disorders (ex: schizophrenia). There's no logical reason why this should be true, or why children in some school districts with "learning disabilities" get support while children with low IQ don't. That's why nobody has "mental retardation" any more; why assign a meaningless diagnosis when another equally meaningless diagnosis provides better services? For us doctors, that's a "no brainer".

We need to fix that problem, but it's not going to disappear. So any reclassification better have big returns. A new classification has to have a big impact on research, treatment, prognostic accuracy or management. This refactoring of the DSM classification doesn't promise much of anything -- except cost savings.

If there isn't a big impact, then we might as well flip the problem around, and redefine "autism" as "cognitive disability, cause unknown". That way we keep the legal protections and services associated with the word "autism", we expand those services to cover everyone who needs them, and we start with an intellectually honest classification that promises nothing and delivers nothing.

Then we start afresh - and begin to classify brain dysfunction based on pathophysiology and objective assessments.

See also:

• Very annoying: the diagnostic criteria for  are not all that useful 11/2005
• Autism turns into Asperger's - how did that happen? 5/2008
• Redefining mental retardation and autism - the revolution ahead 3/2006
• Psychiatric diagnoses: 200 years behind 11/2006
• Autism no more -- the end of a diagnosis 12/2006
• Autism: the label given to a wide and diverse variety of neurodevelopmental disorders 5/2007
• The end of autism 12/2009
• Rethinking neuropsychiatric diagnoses 9/2010
• Victory: The war against 20th century psychiatric diagnoses is all but won 12/2010
• The twilight of "schizophrenia" 4/2011

Advice for Aspies who hate to lose

#2 (aspie) says he hates competition.

That's not precisely true. He loves to win. The problem is, he hates to lose. He really hates to lose. [1]

Tonight that meant he was stressing big time about a spelling bee.

We talked it through. I suggested he turn the problem around. He's not competing to win, he's competing to get through the experience. He's competing with his own disability. Doesn't matter if he cries or not, just that he gets through it. One day, maybe, he'll learn to lose gracefully. Then he'll be able to compete.

He did well with that.

[1] This is a big contrast to #1 (autism, adhd, etc). #1 likes to win, but he doesn't mind losing. That's why he can be a baseball pitcher -- something I could never imagine doing. I was a lot more like #2.

 

Nature November 2011: Special issue on Autism, Mottron's view of the employed autistic and Calgary's Ability Hub

The Nov 2011 issue of Nature (v479, n7371, pp5-144) focuses on "The Autism Engima". It includes 3 reviews/news articles and 1 research article:

• Special issue on neuroscience: The autism enigma - introductory editorial
• The prevalence puzzle: Autism counts - a thorough 'news' review of the prevalence of autism. I came away with the impression that novel environmental changes might account for 0-20% of the increased diagnostic prevalence of autism, but that most of it is better diagnosis and reclassification. Studies of adults suggest that autism was far more common than most imagined -- these children were invisible.
• Scientists and autism: When geeks meet - autistic traits may be advantageous in some careers, but the hypothesis that assortative mating accounts for autism clusters doesn't sound too solid.
• Changing perceptions: The power of autism - this one is a research article, and is behind a closed-science paywall. Science Daily has a summary: Autistic people superior in multiple areas: Scientists must stop emphasizing autistics' shortcomings, expert urges.

I followed up on the Mottron article and came across an excellent National Post article ...

Autism’s advantages: Researcher says autistics need opportunities more than treatment | News | National Post

Because autism — characterized by repetitive behaviours, restricted interests and preoccupations and difficulties in basic social and communicative behaviours such as eye contact, intonation and facial expressions — is a lifelong disorder, parents can be caregivers for life. But as the population ages and parents get sick and die, there’s an even greater need to integrate people with autism into society by giving them the skills they need to become independent adults, experts say. Children tend to be the focus, autism organizations admit. Adults are overlooked.

“After 18 years of age they’re not kids anymore and they’re forgotten,” Dr. Mottron said over the phone this week from Lyon, France. “People have a cliché, that if he’s autistic you can do nothing with him. That’s not true. The fact that you have some terrible autistic life is not representative of autism in general.”

In his commentary, Dr. Mottron cites recent data, including an epidemiological study from Korea published this June that found the disorder is three and a half times more prevalent than common statistics suggest. “Among these 3.5%, about two-thirds have no adaptive problem at all,” he said, meaning they function relatively normally in society and should be able to take on a job.

... Ms. Dawson said it’s unfair to categorize someone as low functioning or high functioning. She and Dr. Mottron believe many tests that are used to determine level of functionality are inappropriate. Less commonly used tests such as Raven’s Matrices, which doesn’t require verbal instruction to complete, can actually reveal very high intelligence levels.

“To estimate the true rate, scientists should use only those tests that require no verbal explanation,” Dr. Mottron wrote in his paper. “If we were to measure the intelligence of a person with a hearing impairment, we wouldn’t hesitate to eliminate the components of the test that can’t be explained using sign language; why shouldn’t we do the same for autistics?”

Ms. Dawson said an entire session at this year’s International Meeting for Autism Research in San Diego focused entirely on finding out how to measure the intelligence of non-speaking autistics, who might be considered low-functioning....

... The founder of Specialisterne, a Danish company that has helped more than 170 autistics find work since 2004, said it’s OK to start such a movement with people who would be considered higher functioning.

“If we will be able to run a business on the skills of medium- or low-functioning, I’m not sure,” Thorkil Sonne said from Copenhagen. “But everyone deserves a chance to feel that they can produce something that others appreciate.”

... the Sinneave Family Foundation’s Ability Hub, a 17,000 square foot centre on the University of Calgary campus dedicated to helping people with autism gain life skills and work training...

... The Ability Hub opened in October and is just one of a few new centres devoted to getting autistic adults ready for the real world, said its executive director, Dr. Margaret Clarke, who has spent a career working with people who have autism — the Ability Centre is under construction in Whitby, Ont., and the Pacific Family Autism Centre to be built in Vancouver.

“Around the world we know that average lifetime cost to society to an individual with autism … is $3.4-million per individual. Three-quarters of those costs are incurred in adulthood largely around services to enable and facilitate individual vocations,” Dr. Clarke said, adding that some data suggests every dollar you invest in pre-vocational programming for people gives you a $7 return. “I actually think that number is going to be even better in the area of autism because individuals with autism have a great capability to learn, they’re just often held back by specific skill deficits or not given a chance.”