Calibrating consequences: managing the iTunes purchases

I should have been more suspicious of the iTunes statements. There seemed to be a lot of them.

Eventually I connected with my spouse, and we realized #1 was exploiting an iOS 7 iPhone configuration error. When he inherited my 4S the iTunes account was configured for delayed authentication (the default [1]). Every time we bought a song or video, he added on a few more. Last year's Stanley Cup series was the giveaway.

When I collared him he pretended not to understand that his purchases cost us money. I respect that. If you have a cognitive disability, you might as well use it to wiggle out of problems. It didn't work though, he knew I knew that he knew how the charges worked. He quickly gave up that alibi.

So we needed consequences. What formula would be most educational, without inducing full rebellion or breakdown? How could we use this to advance his financial skills - and maybe even get some money back?

I needed a balanced formula -- something that had a built-in reward paired with a consequence extending over time. It had to be understandable to him, ideally something visual. After a bit of thought I came up with a formula that worked very well - not least because relatives gave #1 generous iTunes/Amazon gift credits this year.

I created two iTunes Playlists for him - one with the music he'd acquired honestly, the other with his criminal gains. [2] Each time he wanted a new tune, he had to pay twice. Once for the new tune, and once for an old one. I then "moved" the "stolen" tunes from the Unpaid to Paid list, in addition to putting the new purchase on his phone. We did the same thing for the videos.

After the first few purchases he caught on to how the system worked. He was clearly satisfied -- he likes justice fairly applied. Even, or especially, when it's applied to him. We went through about 1/3 of the backlog with his allowance and snow shoveling money, then a deluge of iTunes/Amazon gifts took out the rest. In an impressive gesture he cleared out the last 15 in one direct purchase.

Effective consequences require creativity; this one worked. I'll look for other opportunities to apply this kind of balanced approach. I know they'll come along.

[1] For us this was an annoyance, but in some cases the family financial impact could be serious. I wonder if Apple ever reverses charges on appeal... It would be "nice" if Siri could execute "configure this phone for a child".

[2] I intended to only sync the first to his iPhone, but with iOS 7 there's no way to prevent someone from using WiFi to put purchases music/video onto a phone. I turned the Cloud setting off, but he just turned it back on again. He's learned a lot from his iPhone.

"Explosive Child" Greenes has web site for "Disruptive Mood Dysregulation Disorder" kids and caregivers

#1 and I went snowboarding today. Which doesn't sound like much except that for him snowboarding has been more aspirational than real, and I'm a 50+ Dad.

I knew he needed me doing it with him, and what we both needed was bunny hill time. Not lessons, we did some of those years ago -- a borderline fail then. We needed sliding time in decent conditions.

Which we got. There were some anxieties of his I had to work around, some on the fly strategy invention, and of course I had to learn to snowboard (yay quick iPhone wikihow consultation) -- but we succeeded. Good runs on the greens for both of us. We stopped when he wanted to quit -- at a successful moment.

On the way home I thought of how far he's come since ages 3-7. Those were tough years, they left their marks on our faces. When I started this blog we were just emerging from the worst of it. By then we were experts in applying the lessons of Greene's "The Explosive Child", which I wrote about in 2007. 

It occurred to me that I ought to send Greene a thank you note. That led me to a relatively new site and organization of his, called Lives in the Balance. Nice to see the team working there. 

You can Tell Your Story | Lives in the Balance. I figured that would be one way to say thanks...

For our cognitively impaired multi-label son, ages 3 to 7 were hard. Very hard. I'm glad I don't remember them all that well; I do remember contemplating splitting the family so I could care for him away from his sibs.

We studied the Explosive Child intensively. It wasn't the only thing I studied -- operant conditioning with extinction of negative behaviors and rewards for positive behaviors was essential too.

Things started to get better around ages 7-9. We had more challenges, especially as he got older and stronger, but somehow his judgment developed just a bit ahead of his physical strength. The biting went away, the hitting went away...

He learned to read - at least to around 6th grade level. He learned many other things too -- hockey, swimming, snowboarding, biking, mountain biking, baseball, wrestling (ugh), xc skiing... Many more.

He's almost 17 now. Who knows what lies ahead. Things could go south at any time, but that's true for any of us.

He's come a long way.

The Explosive Child was the most important book we ever read ...

PS. Visiting the site I learned the "Explosive Child" has a new DSM-5 label: Disruptive Mood Dysregulation Disorder - replaces the misused 'bipolar disorder' for kids like #1. There's a comic outlining the evolution of the label, which is as good and as bad as any of 'em .... "PIA", Conduct Disorder, Oppositional Defiant Disorder, Intermittent Explosive Disorder, Pediatric Bipolar Disorder, Disruptive Mood Dysregulation Disorder.

Today's kids are falling behind. In bullying.

Today's kids just don't measure up. Back in the day we did more bullying in a day than this generation can manage in a month.

That's not the impression we get reading stories of bullying on social  networks, or NYT articles on girls at war (or maybe not). It also doesn't match the scary graph on this Guardian article. So it's my anecdote against the world.

Still. It's what I see with my special needs kids, and it's what other parents (usually younger than me) comment on.  We see high school sports teams not only tolerating special needs "managers" and athletes, but making conversation, exchanging polite greetings, even being supportive.

Weird. Nothing like we were.

I know things aren't this good everywhere, I hear from friends in the old country that bullying of special needs kids is still widespread in Montreal schools. I expect there's a lot of more subtle bullying we don't see.

Still. I think there's progress. In our personal experience, todays kids just aren't the bullies we were. They're failing at nastiness.

Special needs in Minnesota - notes from an ARC and family sponsored meeting

I joined a meeting tonight hosted by Arc Minnesota [1] which was both an opportunity to learn from the work of the local Bender family and a chance to chat with a few local politicians (all of whom I voted for of course).

Unfortunately I was delayed and missed part of the meeting, but I'll share some of the issues that came up. There's much more on these topics in a post from last year - Transition and employment - notes from a Minnesota presentation.

•  I heard some good things about the Legacy Endeavors, I think they'd be categorized as a "supported Employment Service Provider" though I'm fuzzy on the divisions.
• Arc is pushing for a 5% increase in reimbursement for aides and other caregivers in the special needs system. They've gone a long time with no salary increases.
• The ACA is reducing or eliminating the "parental fees" associated with buying into medical assistance (TEFRA) (!)
• Minnesota's Olmstead plan, which came out of a court settlement following the meto case, is starting to turn into laws. There's a focus on licensing and quality improvement for provider organizations and moving towards individual annual budgets and "increased flexibility" [2]. A long promised self-directed support option for personal are attendants might become real.
• There's some legislative pressure to limit use of family members as paid Personal Care Attendants due to vague fears of fraud and abuse. This practice is most common amongst 'communities of color' . The common pattern in special needs services is to put in place so many 'fraud and abuse' safeguards that programs become almost useless.
• The Federal move to limit use of group homes realized most of its money savings from reducing 24 hour surveillance costs.
• Minnesota schools are have accelerated inclusion programs in late High School. Personally we haven't noticed any changes - certainly not any improvements. (For example.)
• States vary in how they deal with maintenance of disability benefits when income rises above poverty level. Minnesota is particularly harsh -- ensuring special needs persons with disabilities will be just barely out of federal poverty. There didn't seem to be a lot of energy for changing this.

[1] I believe The Arc used to be A.R.C, and the R stood for what you might expect. Now it's an "Arc" as in the curvy thing. Incidentally, The Arc has a legislative blog. I had no idea - I've added it to the MSP special needs search engine.

[2] "Flexibility" can be a euphemism for "free to do whatever you want and here's a ticket out of town". We'll see.

The person with the hardest job in education is paid minimum wage and has had minimal training

I've mentioned this in prior posts, but it deserves periodic attention.

In most school districts special ed students are "mainstreamed" for several classes. #1, for example, takes Algebra - though he reads and writes at a 3rd-4th grade level [1]. (#2 is also "special ed", but his needs are different. He takes advanced coursework.)

Curiously, and this is why mainstreaming works better than one might imagine, #1enjoys his algebra and seems to get some of concepts, particularly those with visual analogues. (DragonBox helped). He'll never use Algebra in later life, but then neither will most of his neurotypical peers.

Of course he can't follow the regular class materials. That's where the hard job and no pay part comes in. He has an "aide" who is supposed to reinterpret the class material in ways #1 can understand. Yeah, in realtime, without an adapted text. It's a challenging task for a talented thinker who knows the source material very well and can adjust it to the peculiar features of an atypical mind. 

That talented thinker is, of course, not working for minimum wage. Instead the most challenging job in education goes to someone with limited education, no training, minimum wage and limited benefits.

It's interesting to think how we might do better even as our funding shrinks.

[1] Incidentally, long ago, when I was an ignorant physician caring for kids with disabilities, I did not understand how valuable it was to be able to "read at a 4th grade level". That level enables useful email, comprehensible texts, scanning newspapers, reading sports news and much more. The jump from 0 to 4 is bigger than 4 to PhD.

Explaining disability to a boy who won't go to College - truth and hope

I wrote the end of High School, the end of dreams six months ago. Before and since I've been thinking about how to explain to  #1 why he isn't going to get a (true) High School diploma, and why he won't be going to any of the Colleges he loves to dream about.

I think most would agree that this is not an easy conversation.

Fortunately he has given me time to think. He approaches the topic from time to time, but usually veers off. I think I now have a story that is true but leaves some hope and a direction.

The key is that he has many cognitive and behavioral disabilities. Some are more amenable to improvement than others. There's not much, for example, he can do about his base IQ. So I'm not going to talk about that; I won't say 'there are some things your brother and sister learn quickly that you cannot learn'.

I can, however, talk about disabilities that I expect to improve with time and effort. One his core disabilities is difficulty persisting in tasks that he does not enjoy. For example, he has always been a relatively talented hockey and baseball player -- but he is very inconsistent at practicing. Lack of practice means he plays at a C or rec level rather than at a more competitive level.

Of course his hockey or baseball activities, though important for his life, aren't my key focus. They illustrate a broader problem that has biological roots in cognitive fatigue and frontal lobe dysfunction. This biology, however, has shown more change than his base IQ. These problems appear to respond to training, practice, medication, and time. They are problems that can be addressed.

So it is, at the moment, that I expect to explain his disabilities this way:

It is hard for you to work on things you don't enjoy. We and others can help you learn to do that. When you are able to work hard on things that are tiring and bothersome, you will be able to do many things. If you want to do an online High School degree then you could do that too.

ADHD, CDD, and Related Conditions - what I wrote in 2002 holds up pretty well today

I started this blog in 2004, Best You Can Be, when #2 (Asperger) was 5 and #1 was 7. Since that time I've written about my thoughts on the nature of brain disorders and the limits of our medical classifications -- among other topics.

Today I rediscovered one of my last pre-blog classic personal web pages -- it was largely written in 2002 and when #2 was not-quite diagnosed and we were getting our heads around how to work with a 5 year old #1. In some ways the hardest times (to date!) were behind us -- but I'd had time to think about the nature of cognitive disorders and disability. I put some of those thoughts into a web article called ADHD, CDD, and Related Conditions.

Rereading it today it holds up pretty well -- I did a good job anticipating the next decade of evolving thinking about classifications and the nature of disability. If you're thinking of ADHD or similar disorders, it might be worth a scan even now.

Apple's iOS 7 is a big improvement for special needs community - parental controls that work

It hasn't gotten much attention outside of some Christian conservative and geek blogs, but iOS 7 has fixed the longstanding parental controls webkit hole. I first wrote about this problem back in August 2010, when I was particularly enthused about the benefits of iOS for #1 son's use.

That enthusiasm was muted by years of struggle with adolescence, impulse control, and the webkit access flaw he exploited mercilessly.

Now, with iOS 7, the struggle appears to have ended. With my permission #1 attempted, vigorously, to bypass the new controls. He failed, indeed he has had to sheepishly ask me to grant permissions for webkit holes I didn't know about [1].

In addition Apple has done some magic to deal with technical issues related to https use that have completely broken parental controls on OS X Mountain Lion. Today Safari on iOS 7 is much more useful for #1 and #2 that it is on Mountain Lion.

iOS 7 is buggy, and does run somewhat slowly on old iPhone 4 hardware, but this one improvement is more than worth the cost.

[1] Example: In MLB baseball player stats display uses embedded webkit, and so they are a potential avenue to the unfiltered net.

Update 11/29/2013.

Siri: "Show me pictures of dogs". Shows dogs.

Siri: "Show me pictures of xxxx"....

You have to disable Siri, there are no parental controls there. I wonder sometimes if we need a different kind of IQ testing for #1.

Special needs and population health management

Buried in a discussion of improving care of patients who spend a lot of time in emergency rooms, and who cost health care systems a lot of money, is a very interesting phrase

Practicing Award-Winning Population Health | McKesson Better Health

... HCMC decided to open the Coordinated Care Center after its internal studies showed that 3 percent of its patients were responsible for about half of its total costs. To ensure a focus on those high-cost patients, the care center has admitted only patients who had been hospitalized at least three times in the previous 12 months.

... HCMC realized that drug use, homelessness, mental health issues and cognitive impairments are “the kinds of things that fuel super-use,” he says, so it structured the Coordinated Care Center around multidisciplinary teams that include not only doctors but nurse care coordinators, social workers, behavioral health workers and drug abuse counselors who “work together on the underlying problems.”...

Drug use and homelessness are always included in discussions of health care costs, but I do not recall ever seeing mention of cognitive impairment, and of programs specifically targeting cognitively impaired adults who are seen in emergency rooms.

I'll be tracking this.

Special needs update Sept 2013: High School again

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

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

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

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

Special Olympics Minnesota has a summer sports camp

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

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

Summer Sports Camp | Special Olympics Minnesota

June 12-15, 2013

St. Olaf College, Northfield, MN

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

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

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

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

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

Come a long way

As long as I can remember we've done somewhat crazy things with our special needs kids, neurotypical daughter, and our dogs (Molly, then Kateva). We pushed the envelope. Public meltdowns echoing down Main Street, activated contingency plans, parental distress -- we kind of expect that [1]. You can see those expectations in a 2010 post on our first trip to a Nordic (cross country) ski resort. Long before that outing there were bicycle rides, crazy outings, stuff I don't know how I did.

Today was in that vein. We took a lovely bike ride on a hot steamy day. There were challenges - besides the the heat our destination ice cream shop was gone, and our water supplies were inadequate. Worst of all, #2 (Aspergers) always drags in heat, and he didn't "wake up" until he'd done 2/3 of our ride. My patience was tried.

But ... that was it. There really were no big challenges. #2, once he got going, finished easily. #1 has become a strong and very safe bicyclist so he sped ahead, stopping only when he thought we might need his uncanny sense of direction to navigate a tricky area. When we were done #1 remembered a sports bar with an outdoor eating area that, he assured us, Kateva would like [2]. He remembered it because E had turned around in the parking lot one day while lost. #1 remembered the name, the location, the patio and probably much more. He does that sometimes. We had no doubt he was right; this is something he's good at. Better than any of us.

We ate together at the restaurant, which was pleased to have Kateva on the outdoor patio. The food was excellent - though Kateva preferred #3's hamburger and #2's meatball to my walleye. When we got home #1did most of the work putting gear away and getting the van in order -- a job that intimidates E. It never occurred to me to ask him, he just did it. Did it well.

We have come a long way. The very bad times, times that predate this blog, are becoming distant, faded memories. I'm glad of that, I'll keep the good memories.

 - fn -

[1] I expect scornful stares from strangers too, but I don't notice all that many. It's true I don't pay much attention to bystanders, and I'm kind of obtuse, but, even so, it doesn't happen as often as I expected years ago. I think that has something to do with current urban Minnesota culture; most adults know somebody with a special needs child.
[2] She came along too of course. She ran a bit, but on such a hot day she largely rode in a purpose built dog trailer. 

One day autism may be treatable

It's good that some researchers are asking these questions ...

 Progress toward treatments for synaptic defects in autism. Nat Med. 2013 Jun;19(6):685-94

Delorme R, Ey E, Toro R, Leboyer M, Gillberg C, Bourgeron T

... There is currently no cure for ASD; however, results from mouse models indicate that some forms of the disorder could be alleviated even at the adult stage. Genes involved in ASD seem to converge on common pathways altering synaptic homeostasis. We propose, given the clinical heterogeneity of ASD, that specific 'synaptic clinical trials' should be designed and launched with the aim of establishing whether phenotype 'reversals' could also occur in humans....

In other words, we seem to be able to make adult "autistic mice" better, so maybe we can make adult humans "better", hopefully with a different outcome than Flowers for Algernon. To put it mildly, this will be a long and tricky road. 

My #1 is 16, so it's not impossible that sometime in his life, depending on his particular neurobiology, there might be a medication that might, among other things, increase his IQ score.

It won't be in the next 20 years though. 

My son learns algebra on his iPhone via DragonBox

Friggin awesome.

That's what I got from the look on #1's face when he solved an equation with x on one side, and a numeric expression on the other. He was doing algebra, he knew it, he was proud.

Damn, that was the best $6 I've ever spent.

#1 is entering 10th grade next year in the special needs modification program. He reads at about a 4th grade level (perhaps less) and struggles with basic arithmetic and time calculations. Despite years of practice he can't do long division by hand. Despite this reality, he declined the standard transition programs for a regular junior high academic schedule -- though we worked him down from three languages to one.

Algebra is one of the items on his junior high dream list. That seemed reasonable to me. We weren't getting anywhere with our old arithmetic drills - he was bored and frustrated. Further progress will require years of slow practice on real world problems, and use of his iPhone calculator. Seemed a good time to try something different. So, for his summer homework, we decided to try DragonBox, a French-Norwegian iOS/Android/Windows/OS  X math "game" we'd used with my daughter on an appnetizen's advice (Thanks Jonathon!).

He's been doing it for summer homework several days a week. Sometimes he'll randomly flail at it until the problem is solved, but watching him I could see something else developing. Something that perhaps played to his near-savant visual processing strengths. With DragonBox he was learning negation, reduction, balanced operations, add zero, divide one - basic algebra. A little bit of progress every day - on his iPhone, as a game.

Today he got to the level where the graphical icons were replaced by numbers and variables. When he solved the numeric expression he blushed with pride and joy.

That's worth $6 I'd say.

Now we'll work with transferring these skills to paper. I will do paper operations in parallel with his app operations, then see if he'll replicate on paper what he does in DragonBox (step-by-step), and so on. Maybe it will work, maybe it won't, but in our family we believe in declaring victory early and often (and so life is an unending series of wins, until we die).

I've bought the high school version of the app for #2 and #3 - and I'm following the We Want to Know team's blog.

See also:

• Adaptation versus Modification: Critical code words in understanding K12 special education. (plus Settings)
• Status June 2013
• The end of High School, the end of dreams: transition hardness
• Apple's iPad/iPhone App store has a special education section: It's still there
• Math fact drills for an Asperger's child - two excellent solutions: worked well to a point.
• Be the Best You can Be: Judo moves on an atypical mind: Plan iMac: 1/2010. This one worked ok, but he mostly uses the Learning account when he can't have phone time.
• Different minds, Different paths: 10/2009. I'd forgotten how well he did with the game "rush hour".
• Adolescent special needs: Sometimes Judo works 3/2013

Your child has autism. Now what?

I write this blog to help other parents and families, but I also write it to record my own notes and ideas. It's a reference for me. Today, while looking for another post, I found an unpublished draft from around 2004-2006. It was an ambitious post - intended to be a guide to parents with a newly diagnosed "autistic" child.

I never got past the introduction and an outline of topics. Rereading it today, I think it's still worth sharing. Some of my thoughts have changed, but I mostly agree with my old comments.

I suppose if I got enough requests I could fill out the topics, but really this could turn into a book I don't have time to write.
--

Our personal experiences mean that we are sometimes asked to do an autism orientation. I'm writing this post as a kind of mini-orientation that I can point people to, as well as using it to index some site references. I'll update it periodically, though most of the changes will be over the next few days. 

Before I begin, I need to state my biases. I write from a skeptical, technical, scientific, evidence-oriented perspective because that's my natural disposition. This means I spend little or no time discussing thimerosal, immunization, very poorly defined syndromes, etc. I have a lot of sympathy and empathy for families who pursue "alternative" therapies, but it's not what we do or write about. That doesn't mean we don't try things that have very limited evidence (such as "sensory integration" treatment), but we have modest expectations, we demand a very low risk of harm, and we look for empirical evidence of benefit. This doesn't always thrill the therapists, but that's tough. 

I think one starting point is this post and the article it links to: Welcome To Alaska. The Wikipedia article on autism, at least for today, isn't too bad. It's likely to be periodically afflicted by strong beliefs that lack evidence, but it should be relatively easy to spot those and read around them. 

The term "autism" is like "dropsy" in the 19th century -- a generic term used because we don't really understand what's going on. "Autism" is applied to children who are probably afflicted by a variety of brain dysfunctions and a wide range of healing adaptations. There now thought to be at least 6 major gene associations [that was 2006 or so] and there are probably many more. [2013 - many, many, many more]

For example #2 has the diagnosis of 'classic autism' but he has an above average IQ and does many things very well. He's quite verbal and reads well. 

#1 has a diagnosis of 'autism spectrum disorder' and is like #2 in some ways, but not in many ways. #1 has a much lower IQ, struggles to read and has far more behavioral problems, but has quite decent athletic skills. 

Almost all autistic children will tend to be rigid and prone to tantrums, but some are extreme cases (these tend to get more attention and may be difficult to care for at home) while some are not really all that hard to manage. #1 stresses our limits, but #2 (the autistic one) would probably not be too much parenting work if he were an only child. [2013: He got to be more work as he got older :-)]

It's very hard to generalize or predict about course or therapy. There are lots of strongly held opinions about therapy, but not all that much science. We've followed a 'moderate' path informed by professionals we trust, the research literature, and our own observations of both of our boys. 

We try things and see what happens. Often I'm surprised by what they can do. The very scanty scientific literature suggests that even with almost no professional intervention many children with autistic like features are much better as adults. It can be very hard to connect with the excellent therapists and it may be worth joining one or more waiting lists now. E may have ideas on therapists, but given our backgrounds and situation we've tended to rely more on domain specialists and ourselves than a general therapist. To put it a bit crudely, we're the 'general contractor' for the boys, and we hire out the specialty stuff.

The original ends with a list of topics I wanted to cover. The comments below are from the perspective of 2013:

• Autism society of America: A good organization, but less useful for us than I'd expected.
• Personal care attendent and IEP and state/county aide: Wow, we spent years trying to make aides/PCAs work. In the end we realized the PCA system was a poor match for our needs.
• Temple Grandin books: It's useful to read 1-2 to get a feeling for a different mind, but she's no more like our boys than they are like us.
• Financial planning: Complex!
• Our book case, of which I took this picture way back then:

Status June 2013

#1, #2 and #3 (neurotypical) made it through another school year. 

By our standards it went well for all. For #3 some encouragement and routine parental attention was needed; I sometimes wonder what parents of neurotypicals do with all their spare time. Joking! I don't know if there really are any neurotypicals, and even an average adolescent can be a heavy challenge.

Managing school for #1 and #2 required rather more effort. That fell largely upon E; a small part of those challenges have been noted here. This is why E and I cannot both work full time; this burden is why so many families of special needs children suffer economic hardship (we are more fortunate). She sometimes pushed, sometimes negotiated, monitored, compromised, met, opposed, allied -- and that was with the school. Then there are the kids.

There is more work ahead, but I've learned not to gather sorrows before their time. We may be wiped out by a meteor before then and the worrying would all be wasted.  Instead, for my own benefit, and for those on earlier phases of the journey, I'm looking backwards -- abetted by the serendipitous discovery of an old unpublished post.

Looking back, despite the tenor of posts often written amidst struggle, much has been achieved. Nothing miraculous, more like the seas wearing away rock over years and centuries, still, progress.

#2 was a great fit at age 2-3y to the DSM III diagnosis of autism. Not Asperger's, straight up autism. This year he completed the advanced academic track of his middle school, won a class-leading award, was on the (non-adjusted) Honor role, plays hockey, mountain bikes, road bikes (a little scary that), inline skates (I no longer tow him), nordic skies, swims well (loves the deeps), is learning Python programming this summer, does his chores, and a bunch more I forget. Witty, charming, seems to be liked by his classmates, insightful, a skilled artist, a happy reader...

It adds up over time. There was no ABA in that history, but lots of work and patience and time and chance. He's not neurotypical; there are a lot of things that will derail him, but he's covered a lot of ground.

#1 has more severe disabilities. He won't go to college. He still has trouble making change and calculating analog times; I doubt his reading tests above 4th grade. But he reads! He writes (email and texts)! Heck, at one point we feared he wouldn't speak.

He does baseball, tennis, golf, swimming, hockey, horse back riding, nordic skiing, soccer, mountain biking -- he plays with adapted teams and he plays with mainstream teams (sometimes at the same time).  He's becoming a skilled road cyclist -- able to give me a good 2 hour ride even it he tends to stay in 9th gear on the hills. He does his chores and his homework, and he does well editing his iPhone calendar and integrating it with the family Google Calendar. He's getting more lawn mowing jobs, he manages the horses at summer camp. He wants to do high school algebra next year [1] so this summer he'll practice on DragonBox+. We're going to teach him more task, time and schedule management skills so that he can be less dependent on his high school class aides [2]. He no longer gets a timeout/respite every 15 minutes [3].

That's a lot of progress.

Now for the summer ... 

[1] Fine with us, I don't think more time on long division will make much difference. He'll work with his special ed teacher.
[2] School aide skills varies widely, as do the skills and interest of the responsible vice principal. We've had some excellent aides, but in the case of #1's year to come we'd prefer to need them less.
[3] It's getting hard to remember how hard those times were. 

The end of High School, the end of dreams

Parenting #1 is river canoeing. There are moments of flow, even quiet times. And then there are the rapids and the waterfalls. Now we can hear another waterfall in the distance, perhaps the biggest so far.

#1 is finishing 10th grade. He loves books and school. He is proud when he makes the honor role. He loves his biology class. He wants to take a heavy course load next year. He knows the colleges he wants to attend.

#1 reads at about the fourth grade level. He struggles to solve exercises involving clock time. He can do simple arithmetic. He is not going to go to attend college, he won't get a High School diploma, he will get our school district's equivalent of a certificate of completion.

His cognitive disability means he is not fully aware of the gap between his abilities and his dreams. Disney, it seems, is wrong; it is not enough to believe in yourself. He has thought of himself as a good student, somebody who might help teach 9th grade students. He applied to join his school's leadership team (and, to the school's shame, was ignored).

That is the shape of the next waterfall. He is going to discover, in a way he cannot deny, the truth of his circumstances. This comes to most of us, in one form or another -- but not usually in such a harsh and brutal fashion.

I have started to discuss this with him. I have to somehow explain that no matter how hard he tries, he cannot do what most people can do. It is not his fault, it is not something he can fix by working harder, he simply cannot do this. It is disability without the inspirational movie ending.

Somehow, in the midst of crushing all his hopes and dreams, we have to give him something else. We don't know what the hell that is. Sometimes I think I'll start a business he can work with me on. Mostly I think I'm delusional about that.

This is not easy.

See also

• High school tips (grade 9) 11/2011
• Special education vs. standards based grading: What are grades for? 9/2012
• Adaptation versus Modification: Critical code words in understanding K12 special education. (plus Settings) 10/2012
• Transition and employment - notes from a Minnesota presentation 4/2013

Rebooting pyschiatry: time for a new set of disorders

I can't remember when I first decided that the psychiatric classifications I'd learned in medical school had outlived their usefulness. It was probably a gradual process, but by 2005 I wrote to a colleague "DSM IV was great in its day, but new knowledge is breaking down the simplistic classifications of the 1960s and 1970s. Schizophrenia, autism, etc -- bah, humbug. Those labels are better than nothing, but humans tend to confuse labels with reality …".

A few months later I took my rants public and went on for about 30 posts or so.  Soon I learned I wasn't alone, and by 2010 victory was in sight. I was a solitary crank no more.

After a bit of a hiatus the end came quickly, first with a frontal attack by the director of the National Institutes of Mental Health, then, amazingly, a NYT editorial. I mean, really, an editorial?

It's been one heck of a ride over the past 8 years. This rebellion must have been brewing for much longer in the research community, but I've been following this area pretty closely and it was cool to see it grow from nowhere to become a consensus. (I may be a crank, but I'm not crazy. I know my posts had no effect on this transformation.)

Okay, science has won. So now what ….

*cough*

Well, for now, we keep on using our legacy classifications -- either DSM IV or V, they're equally valid and equally invalid. Terms like "autism" [1], "schizophrenia", "depression",  OCD, ADHD, and "bipolar disorder" will remain guides to initial pharmaceutical therapy. Even more importantly, they will be the basis of reimbursement, regulation, disability support, and legal process for years (decades?) to come.

At the same time researchers will be using new terms to group people who seem to share common biology, including genetic programs and common protein expression. Those groups will cross traditional boundaries like childhood schizophrenia and autism; they will include some atypical minds that may be highly functional or advantageous in certain environments -- but that share traits with persons who live with disability. 

From new classifications will come better prognosis, better guides to treatment, and better outcomes. Our best guide to what lies ahead is to look back to the early 20th century, when people like William Osler and his colleagues rewrote the medical textbooks. In those days terms like "dropsy" were used to describe patients with heart failure, renal failure, lymphatic obstruction and venous valve failure. Four very different biological processes were assigned the same label and similar treatments. Reclassifying those patients was a first step towards scientific medicine.

Psychiatry, powered by the neuroscience renaissance of the past thirty years, is now taking the same journey.

[1] Aspergers', traditionally considered an autism variant, was dropped in the revised classification of disorders called DSM V. I understand the logic, but I actually think Aspergers was a relatively useful label. Ironic that we lost that one first.

Update 5/18/13 - my favorite psychiatrist blogger summed up our past and future worlds in two short posts:

• New Efforts to Overhaul Psychiatric Diagnoses Spurred by DSM Turmoil | Follow Me Here...
• Suicidal behaviour is a disease, psychiatrists argue | Follow Me Here...; An impulse disorder?

Transition and employment - notes from a Minnesota presentation

The special needs roller coaster starts to speed up again in 10th grade.

Tenth grade is when #1 is no longer encouraged to join mainstream sports teams, perhaps because the coaches are no longer educators. They are competitors. Tenth grade is when the gulf between him and mainstream students he admires becomes too big for him to ignore, and there's sorrow in his heart he does not understand and cannot express. It's when the focus changes from an educational track to an employment track.

Employment was the focus of a meeting I attended today. I won't try to summarize what I heard, instead I'll summarize what I think is happening in Minnesota and probably nationally. My summary has only a passing resemblance to anything I heard today, it's my own personal impression for which nobody bears responsibility.

To keep this short, so I can get to sleep, I'll do this in a series of bullet points.

How things used to work in the 70s-00s.

• After deinstitutionalization in the 1970s money was made available for community care of disabled persons in the form of waivers:
• DD: Developmental disorders
• CADI: Mental health (schizophrenia mostly)
• CAC: Severe medical (vent dependency now, once might have been more)
• BI: Traumatic brain injur (this may be more recent)
• The waivers were used to pay for various forms of what was once called Supported Employment for developmentally disabled adults whose primary income came from Social Security Disability.  Supported employment and related activities included:
• DTNH employment: piece rate and workshop activities that paid less than minimum wage. Aka "Sheltered workshops" or "Work Centers"
• Pre-Voc programs: ?
• Day Programs
• Adult day care
• Regular employment with funded supports and supervisors (and perhaps subsidies to employers?)
• Schools provided work experience programs and work rotation during transition (typically 19-21)
• These programs were administered by agencies (non-profit usually) sometimes known as "Employment and Alternative Service providers" and "Supported Employment Service (SES)" providers and typically organized by County though some provide services in multiple counties. (See 2009 Access Press directory and the Minnesota Habilitation MSP index)
• Kaposia
• ProAct (A friend recommends them)
• Center for Supported Independence 
• East Suburban Resources
• Lifetrack Resources
• Lifeworks Services
• Metro Work Center Inc.
• MRCI WorkSource
• Rise
• TSE-Inc
• Homes
• AccessAbility
• Merrick
• WorkAbilities
• Zenith Services

How things work in the 10s.

• There is much less money available to support employment. In particular, waiver lists are growing. To receive waiver support now may require homelessness. [1]
• With "Reform 2020" services will be less county specific and more state delivered
• Instead of "Supported Employment" we have "Customized Employment". This is employment that is in some way adapted to the special needs population though it is now used for any adjusted employment including part-time work. It is typically but not necessarily minimum wage employment and it is often part-time.
• There does not appear to be any direct financial or tax benefit to employers who do this, though adults on social security disability may quality for vocational programs like "ticket to work" and there are some SSI incentives that provide support.
• There may or may not be some form of external work support for non-waiver disabled (this is fuzzy)
• We have about 1-2 years of early experience in MN with Customized Employment and no data at all on how well it is working particularly in the new post-waiver era.
• There appear to be two paths to Customized Employment which roughly follow the adaptation vs. modification educational tracks.
• More disabled (educational modification, non-diploma track, social security disability): This tracks makes use of services like Kaposia to assist with finding job opportunities. These services are not available privately, they still rely on funding sources but seem to be able to find money from vocational rehab or county funds even when waivers are not available - at least at this time. At least some of one of these services claim good placement records "0 reject model" and they can be impressively creative.
• Less disabled (IEP, educational adaptation, diploma but not college): This track does not use "Supported Employment Services". This depends entirely on parents to arrange for networking, "informational interviews", employment training, work experience training and so on.
• IEP work experiences provided by school districts post-graduation (19-21) are being reworked and are less encouraged. It's not clear how well current grade 11/12 programs work.
• Employment opportunities do seem to rely on the kindness of local small businesses and a few large employers. Workers in the system prefer not to share employer information, perhaps for fear of overloading them.

It reminded me of a presentation I attended some months ago on housing services for the Minnesota special needs population. We learned that the old system was gone, the money was missing, and it was all up to parents now.

 

[1] Parenthetically, the prison-industrial complex is thriving, so we may have outsourced care of the mentally ill and developmentally disabled to the prison system. 

See also

• Adaptation versus Modification: Critical code words in understanding K12 special education. (plus Settings)
• Be the Best You can Be: Special education vs. standards based grading: What are grades for?
• PACER - Day Training and Supported Employment Programs www.pacer.org/parent/php/PHP-c199.pdf (Excellent summary)
• PACER - Resources for Families on Preparing for Employment
• Lifepages - Services - Search Results: Dated but one of the few references I could find
• T-TAP: Strategies: Customized Employment: Q&A
• DB101 Minnesota - Home
• Directory of Organizations for Persons with Disabilities - Employment
• State_Rehabilitation_Council_Report Center Based Employment.pdf 2011 - recommended
• Minnesota Habilitation Coalition: Industry group representing employment provision services
• Social Security - working while disabled. pdf - pamphlet for general disability
• Social Security Online - Work Incentives - Detailed Information
• Social Security Online - The Red Book - A Guide to Work Incentives the authoritative reference for SSI disabled special need adult work

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

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

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

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

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

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

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

Connect WC: a superb MN resource for children and adults with developmental disabilities

Washington County is a predominantly exurban and suburban region west of the Twin Cities. I didn't expect it to be the home of well done website on Developmental Disabilities Resources and Information funded by the CCP Foundation [1]. Some of the material is Minnesota specific, but much of it applies anywhere in the US. Only a few topics are truly specific to Washington County.

I learned a few things about developmental disability options in our region -- and that doesn't happen too often. Some the pages to check out include:

• Sports
• Entering Adulthood: I didn't know my son could get a 50 cent (!) reduced fee ID card.
• Dating, Relationships & Sexuality

Despite the web site description, they mix physical and cognitive disability resources. They could perhaps do a better job separating those, but many people with cognitive disability also have physical disabilities.

 

This may be the best web site on special needs services I've seen anywhere - certainly the best in Minnesota. I've added this domain to the Google Custom Search for special needs services in Minneapolis and St Paul.

 

[1] Alas, its grant program just ended.

Transferring 529 assets to siblings

Long ago we created 529 plans for our children; including #1. Even then we knew #1 wouldn't likely go to college, but we also knew that when the time came we could switch beneficiaries to #2 and/or #3.

That time has come. #1 is approaching an age where we will assume guardianship. At that time he will become officially disabled and receive state financial support. The assets we can provide will be channeled through a protected trust.

I have the beneficiary reassignment form; I have only to complete it and put it in the mail.

This is not an easy thing to do.

Reminder: keep psych meds locked up

We've always locked up medications for basic safety reasons, but we've friends who've learned the hard way that this is a good idea.

There are two reasons to keep meds locked up. One is accidental or misguided misuse by a young or judgment impaired child. I've read stories of high functioning ASD adolescents overdosing on sedating medications to help them sleep.

The other reason, of course, is that many behavioral meds have street value and are widely abused. They can be a powerful temptation for teenagers.

So lock 'em up.

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 

• Reading about autism and ADHD - our personal favorites 11/2007
• Changing behavior in children: Kazdin for most and what we do now 4/2008
• Net world and guiding the special needs adolescent - tricky business 3/2013
• Special needs adolescence: separating compulsion from poor choices 8/2012
• Special needs adolescence: enter the unknown country. 8/2012

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.

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:

• Most vulnerable students to get one-two punch under sequester | MinnPost
• Meet the cross-subsidy, an increasingly painful way to pay for special ed | MinnPost
• The safety zone: Inside a school where no student's needs are too tough | MinnPost
• Legislative wish list crafted to better help schools' most challenging students | MinnPost
• Special education cross-subsidy: Where has it grown the fastest? | MinnPost

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.

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.