Sunday, March 17, 2013

Adolescent special needs: Sometimes Judo works

#1 was on track to give up on mainstream hockey halfway through the season. I'd been using carrot and (proverbial) stick but he was dug in and sullen. It looked like he was going to lose one of his best growth and happiness sources, that he was going to drop out of hockey just as he'd dropped out of baseball last summer.

I was frustrated, but I could see I wasn't going to win. Better to lose this battle than to lose our relationship.

So when he challenged me to bribe him to finish the season I pulled a Judo move. I stepped back.

I sat down with him at a time I chose -- when he was at his best. I said that now that he was almost an adult, he really had to make his own decisions. I told him I thought he'd gain a lot from continuing and that it would make me happy, but it was his decision. There'd be no prize or reward for finishing the season -- just his usual post-hockey chips or soda. There would be no punishment for dropping out ...

Well ... I cheated a bit on the last. I didn't want him substituting iPhone-zombie-time for his hockey. So there'd be no computer/iPhone use during times he would have been at hockey. He could read or do other activities [1].

Of course, as you can guess from the post title, it worked. At first he was uncertain, but one night we walked through the season schedule. He picked one late night practice he'd skip and one he'd miss due to a High School sports conflict. (He ended up missing only one practice when I was out of town and we couldn't bring him.) After that review he was relaxed and enthusiastic.

I don't know if it was my talk that worked, or the support of his coaches who also had Special Hockey experience, or if a girl he liked said something nice about his hockey. At his age I'm only one of a lot of influences, and probably not the biggest one.

I was surprised that he did so well; I don't think this would have worked in the past. His mind is developing -- he's starting to have more of a sense of time and of future events, and he's starting to work with abstractions like "promises" and "obligations" and "duty" and "honesty". He never used to respond to 'negative' feedback [2], but now he seems to consider consequences a wee bit beyond the immediate.

I don't want to overstate the changes. A bird in the hand is still worth a thousand in the bush. There is progress though, and reason to celebrate another victory. [3].

- fn -

[1] We have very limited household television access.
[2] Hence our heavy use of positive incentives and extinction rather than the balanced approaches that work for most children. We have a neurotypical daughter, and she essentially raised herself with a minuscule parental contribution. Our #2 is at the Asperger's end of the spectrum but is super-sensitive to feedback. #1 is different. Yes, we snort milk out our noses when we read conventional parenting books. 
[3] Our philosophy is to celebrate victory often. So every time we can plausibly declare victory, we do. There should be a name for this philosophy; it results in a lifelong string of repeated victories until the game is called.

See also 

Sunday, March 10, 2013

Net world and guiding the special needs adolescent - tricky business

#1 is less than two years away from legal adulthood. In his case that will mean guardianship, but more independence nonetheless.

So he gets more freedom, including an iPhone Facebook.app account I can monitor. He doesn't know the account password, I entered that into Facebook.app on his 2nd hand contract-free $10/month Paygo iPhone.

We review his Friend list and activity about 1-2 times a week, and of course I visit his page from my Facebook account and from his account. It's not foolproof of course -- like most 3rd party iPhone apps Facebook.app ignores the iOS Safari setting and allows unfettered web access via embedded Webkit. (Yes, Apple's parental controls are a joke. Android's are even worse.) At his age though, even that backdoor is a bit of a feature. It lets me more or less observe how he handles it.

So far, so good - but there's a twist. He likes to save images he finds on the pages of his High School friends and acquaintances. They are views into a world he cannot join; I grieve for that. I think, in his own way, he grieves as well. The pictures are generally benign, but they are pictures of 15-18 yo boys and girls. He is prone to share them via his iOS Photo Stream to his brother and I.

And that's the twist. Pictures that are reasonably appropriate for the phone of a 16yo boy are not a great idea for the phone of a 50+ yo man. It took a week or two for me to think of this and turn off his photo stream. I'll have to simply review his phone, which is easy to do each night.

Tricky business being a special needs parent in the net age.

Friday, March 01, 2013

Special education in Minnesota - The MinnPost series on costs and funding

In the 1960s Minnesota education was a mess. It was funded entirely by property taxes; those who had the least need got the most funding, those with the greatest need got the least. [1] The disparities were egregious. Then, in 1971, came the "Minnesota Miracle". Education was increasingly funded through state taxes.
 
This worked very well for Minnesota, until, in 2002, Minnesotans elected GOP governor Tim Pawlenty and a Republican legislature. They reduced state funding and shifted overall funding back to property taxes; this benefitted their base and harmed the state.
 
Now, 11 years later, education in Minnesota is struggling. Not surprisingly, the effects are being felt most strongly in the funding of special needs education. MinnPost, a digital only nonprofit [2], has put a series together on the topic:
The Star Tribune has a also published a related article: Rising special ed cases are huge cost to Minnesota schools.
 
There's a lot of material in the articles. A few key takeaways, with the caveat that the articles are sometimes more anecdote than science:
  • Some of the cost increases may be related to the education and support of students who, as recently as 10 years ago, might have been institutionalized. As we've learned more about educating special needs students, we're also handling more difficult challenges.
  • There are three regional school districts that focus on special needs education, including New Hope's North Education Center in District 287. They serve about 3,600 students, of which 2,000 were referred in from a home district which pays the bill.
  • The average MN student costs $11K/year to educate, the average special ed student costs about $20K/year to educate [2], and the students in the North Education Center supposedly cost $70K/year. [3]
  • A "large" percentage of St Paul's severe EBD students are African-American and only 30% are ever in a regular classroom [4]. There is significant pressure to at least partly mainstream these students.
  • St Paul's special education district spent @98 million on special education, but only received $62 million in state funding. In other words, special education services are an underfunded state mandate [8]. The remaining $36 million came from other educational programs; the term "cross subsidy" is sometimes used to describe this funds transfer [5].
  • Obsolete rules mandating particular adaptive technologies waste money; iPads are much less expensive and much more desirable. [6] 
  • The sequester will cut $7 million in Title I funds [7] and 9.2 million in federal special ed funding.
  • The special-ed population has risen from 13-15% of the state's student body over the past 10 years. [9]
It's challenging to interpret these articles because, as my footnotes attest, there's a lot of missing data. My sense is that the overall demand is stable or slightly up, but that we are educating children who once received little education. Most of all, we are living with the damage done by Tim Pawlenty and his GOP legislature, and their reversal of the "Minnesota Miracle" educational funding system. That damage has been compounded by the Great Recession, demographic trends, and a shift from public to private/charter schools.
 
On the bright side, we are emerging from the Great Recession, the GOP are out of power for the moment, and the Accountable Care Act's mental health funding may allow schools to offload some of their services to the healthcare sector. From our experience, there are ways to improve the quality of special care education while also reducing the costs -- though they may require some 'no-child-left-behind' reforms. We can certainly change laws that mandate use of expensive and obsolete technologies.
 
There are issues here, but they aren't insurmountable.
 
- fn -
 
[1] American public education is often funded through taxes on property. Most nations think this is insane, and a major contributor to America's socioeconomic distress. Most nations are correct.
[2] We donate.
[3] We have two children in special ed. #1 is in a modified track, # in an adapted track. It would be interesting to see where the extra 10K goes; I suspect it's partly for speech and occupational therapy. There's also a lot of administrative overhead in managing special ed students.
[4] How large? No data. 
[5] The 2007-2008 budget was 630 million. Assuming it's now about 660 million, the cross-subsidy would be very roughly a 7% "tax" on other programs but in some articles this is described as 20%. The descriptions of what is meant by "cross subsidy" are not always clear.
[6] I've read that elsewhere. The rules require the devices be single purpose, that rules out modern adaptive devices.
[7] Poverty focused funding, but that includes many special ed students.
[8] Unfunded mandates are a common political vice.
[9] We don't know how much of this arose because of shifts of students out of public schools to private schools, or if this number counts charter schools. Given "wealthy flight" in MN over the past decade this might be little true change.

Saturday, February 16, 2013

Title IX for disabled student sports?

I've had concerns with my #1's school, but some very dedicated teachers have provided him with adapted floor hockey and adapted soccer activities. For him this time is more valuable than most of his coursework.

The exercise is good -- adapted floor hockey is more work than I'd naively expected. The social activity is more important though. He's able to work and play with his peers. 

It wasn't easy for his teachers and the schools to put these programs together. They have to work around the fuzzy boundaries of "CI" and "PI", a divide that predates autism spectrum disorder. His teammates are technically "PI" (physically impaired) but most have some degree of "CI" (cognitive impairment) as well. In his case the CI is significant and the PI a bit of a stretch -- but "pure" CI opportunities are very limited.

For #2 son, who has "high functioning" autism, there are no school sport options. Whereas #1 has a relatively easy time joining adapted or mainstream sports teams, #2 would need some inventiveness. (He does quite a few sports -- but on his own terms.)

For both of my boys, and for special needs students in general, there may be some good news on sports access....

Education Dept. Clarifies Law on Disabled Students’ Access to Sports - NYTimes.com

The Education Department’s Office for Civil Rights clarified legal obligations Friday for school districts in providing access to sports for students with disabilities....

... The guidance concerns Section 504 of the Rehabilitation Act of 1973, a law that deals with the rights of disabled people who participate in activities that receive federal dollars.

A school district ‘is required to provide a qualified student with a disability an opportunity to benefit from the school district’s program equal to that of students without disabilities,’ according to the Education Department.

Advocates for disabled athletes, some of whom have pressed legal claims against state athletic associations in recent years, praised the clarification of rules and said that as a result, participation for disabled athletes could rise.

‘This is a landmark moment for students with disabilities,’ Terri Lakowski, chief executive of Active Policy Solutions, a Washington-based advocacy group, said. ‘It will do for kids with disabilities what Title IX did for women. This level of clarity has been missing for years.’

At least 12 states have passed laws in recent years requiring schools to include disabled students in sports and other extracurricular programs, and the Education Department’s guidance is considered a complement to those laws.

‘Taking them together with the state laws means more opportunities for disabled athletes,’ Lakowski said. According to the department, a district’s legal obligation to comply ‘supersedes any rule of any association, organization, club or league that would render a student ineligible to participate, or limit the eligibility of a student to participate’ based on disability...

That sounds encouraging. But ..

... No student with a disability is guaranteed a spot on an athletic team for which other students must try out, according to the Education Department. But districts must ‘afford qualified students with disabilities an equal opportunity for participation in extracurricular athletics in an integrated manner to the maximum extent appropriate to the needs of the student.’ ...

That sounds like it's meaningless.

I think it's premature to call this "Title IX" for disabled sports access, even if we remember that it took a lot of lawsuits to make Title IX more than words. I'll go with "encouraging" for now, but we need to watch where this goes. It may make a difference if litigation is needed.

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.

ReasonDiplomateNon-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:

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?

Friday, November 30, 2012

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:

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.