Dating and relationships on the spectrum: AUSM presentation and reading list

#2 and I attended the first of a planned series of Autism Society of Minnesota (AUSM) presentations: Dating and Relationships: How Does This Work?

It was awesome.

There were two parallel tracks. A track for spectrum teens 12-19 was led by Jeannie Uhlenkamp, author of  The Guide to Dating for Teenagers with Asperger Syndrome. A session for professionals and parents was led by Sara Pahl and Dawn Brasch. The teen track would have been challenging given the variety of interests and learning features. My track is best summarized as “so we’re not the only ones”; between #1 and #2 I could have spoken to every topic. (And suggested a bunch of additional topics for a future “advanced” track.)

The frank discussion of the legal aspects of spectrum sexuality and choices was particularly appreciated.

This needs to be turned into a video series for wider use. I understand the AUSM has plans in that direction.

For now, here is a reading list from today’s session:

• The Guide to Dating for Teenagers With Asperger Syndrome: Jeannie Uhlenkamp: 9781934575536 (by the speaker). Despite the title this also works for #1, who is on spectrum but not Asperger.
• Dating For Dummies: Joy Browne: 9780470892053: Amazon.com: Books. Not written for spectrum teens, but recommended by speakers.
• Socially Curious and Curiously Social: A Social Thinking Guidebook for Bright Teens and Young Adults: Michelle Garcia Winner, Pamela Crooke: 9780884272021 (illustrated)
• Decoding Dating: A Guide to the Unwritten Social Rules of Dating for Men with Asperger Syndrome (Autism Spectrum Disorder): John Miller: 9781849057806
• The Autism Playbook for Teens: Imagination-Based Mindfulness Activities to Calm Yourself, Build Independence, and Connect with Others (The Instant Help Solutions Series): Irene McHenry PhD, Carol Moog PhD, Susan Kaiser Greenland JD: 9781626250093
• The Aspie Teen's Survival Guide: Candid Advice for Teens, Tweens, and Parents, from a Young Man with Asperger's Syndrome: J. D. Kraus: 9781935274162

Personalized learning with a school iPad in special needs: Feedly and Pinboard shares

I may be have an opportunity to do some more writing, in which case I’ll have more to say about the good and imperfect aspects of our school district’s iPad-based personalized learning program for special needs students.

One imperfect aspect of the program is that it doesn’t exist just yet. The school iPad is real though, so #1 and I are doing something on our own. He completes daily assignments to earn home WiFi services for his school iPad. 

One part of the program that works well is using a Feed Reader [1], in our case Feedly. I’ve subscribed him to a number of Feeds including

• 6 NYT section feeds [2]
• 7 local and national road and Mountain Bike blogs, the latter has video feeds
• Family Calendar feed and photo share
• CNN Student News (video)
• Sports: ESPN, Formula1, Golf
• Local: streets, walking

His daily assignment includes reading one or more feeds and doing a verbal summary of something he’s learned.

 

Today I added a new feed, one based on my Pinboard shares. I use Pinboard as a microblog link-comment platform. Every Pinboard post tag has a feed, and via app.net PourOver and IFTTT rules I publish to Twitter, App.net and my own archives. I started tagging science and other things I want him to study with his first name, and then I added the Pinboard RSS for that tag to Feedly.

 

So when I see a great BBC visualization of exploring the earth’s core, I just add his name to it and it shows up in his Feedly reading list as assigned reading.

[1] When the school program started we could install approved apps from the School’s service app, or “free” App Store apps (meaning ad-supported or exploitative, so superb educational apps like DragonBox are unavailable). So we went with Feedly as a feed reader. Feedly has actually worked quite well, but sadly the school has ended the App Store service leaving many apps of interest to special needs learners in limbo. If Feedly stops working I’ll switch him to using either AOL’s free Feed Reader or Feedbin.

[2] He reads at a 4th grade level. I don’t know why he likes to read the NYT.

Special needs adolescence: separating compulsion from poor choices

#1 son is deep in the unknown country of special needs adolescence. He hasn't necessarily added OCD to his ADHD, but there's always been an element of obsession and compulsion in his nature. That's a bigger problem these days.

When I consider the behaviors I'd like to change, I find it useful to divide them into two categories:

• compulsive behaviors
• poor choices

Of course all behavior is a mixture of both, but it's still, I think, a useful distinction. Consider, for example, a man who loses $1000 playing poker in Las Vegas. If he can afford to play and lose, he doesn't have a problem. If he chose to play and can't afford to lose, he made a poor choice. If he was compelled to play, whether or not he can afford to lose, he has a gambling problem.

 

There are ways to change behaviors, but the techniques for changing choices are different from the techniques for changing compulsive behaviors. Most importantly, his choices aren't in play if his behavior is compulsive. Until we address the compulsion/obsession aspects of his behavior we can't work on his choices.

 

So we're studying techniques that have been developed to address obsessive-compulsive disorder (OCD). These fall into two broad divisions: behavioral and cognitive. Because of his low IQ we clearly need to emphasize behavioral therapy.

 

From what I've read so far than means "Exposure and Response Prevention" or "Exposure and Ritual Prevention", which is apparently based on "Pavlovian extinction" or "respondent extinction" (something we're a bit familiar with).

 

Based on my limited readings I'm putting together a plan that we can review with his therapist, and a reading list (below). From the list I can see that if Ross Greene is the guru of the explosive child, then Enda Foa is the guru of compulsion management. 

See also (clearly Edna Foa rules):

• Randomized, placebo-controlled trial of exposure and ritual prevention, clomipramine, and their combination in the treatment of obsessive-compulsive disorder... Foa et al, [Am J Psychiatry. 2005] - PubMed (Clomipramine didn't seem to add anything! This article can be freely downloaded and is quite readable.)
• Exposure and ritual prevention for ob... [J Consult Clin Psychol. 2003] - PubMed
• Exposure and Response (Ritual) Prevention for Obsessive-Compulsive Disorder: Therapist Guide (Treatments That Work) (9780195335286): Edna B. Foa, Elna Yadin, Tracey K. Lichner
• Amazon.com: Stop Obsessing!: How to Overcome Your Obsessions and Compulsions (Revised Edition) (9780553381177): Edna B. Foa, Reid Wilson (Amazon's "customers who bought this also bought" list is extremely useful)
• Treating Your OCD with Exposure and Response (Ritual) Prevention: Workbook (Treatments That Work) (9780195335293): Elna Yadin, Edna B. Foa, Tracey K. Lichner
• International OCD (Obsessive Compulsive Disorder) Foundation
• NIMH · Obsessive-Compulsive Disorder, OCD
• Be the Best You can Be: Changing behavior in children: Kazdin for most and what we do now
• Be the Best You can Be: Training exotic animals, husbands and difficult children 6/2006
• CTSA: OCD (Foa's center)
• Augmentation of behavior therapy with D-cycloserine for obsessive-compulsive disorder... [Am J Psychiatry. 2008] - PubMed - NCBI - interesting, but needs replication

Understanding a different mind: memory organization and receptive language

As my oldest son moves into his adolescence, his mind continues to change. Observing him, I get new insights into how his mind works.

He has a pen pal now, a young woman who is studying special education. She started writing him as part of a school program, and has continued on. She is a wonderful correspondent.

My young adolescent tells her stories to impress her. They aren't, however, true stories.

They are generally plausible stories, no more or less impressive than the things he actually does. Often they are things he has done, just not things he has done recently. On the other hand, he omits adventures that I, in his place, would certainly include.

I think he's dissembling a bit, but mostly I think he doesn't really remember what happened yesterday. He may remember it in detail six months from now, but at the moment it's lost to him. So, like an Alzheimer's patient, he fills in the gaps. He tells a story.

His memory dysfunction is a profound handicap all by itself.

His inability to process speech is probably related to this memory dysfunction. It's not usually obvious to anyone, even to us, but he struggles to process  even relatively simple sentences. He will often react negatively to a request, but, if he's given a minute or two to think about it, he will usually reverse himself. I think he needs time to try to reconstruct the sentence, to understand its meaning.

Curiously, as his reading slowly improves, largely due to his email and texting, his written communication is becoming stronger than his verbal communication. He understands ideas that are written as words better than the same ideas spoken aloud. He can read and reread printed text, gradually building understanding and reinforcing his limited short term memory. Spoken words are hard to reprocess.

He has other disabilities, but also some useful strengths. He's quite good with his iPhone, and with software and devices of every variety. Already his calendar, which I can edit from my desktop, is turning into a history of what he has done as well as what he is going to do. He takes hundreds of pictures of construction vehicles (an obsession), but in time the phone photo library will become a history of things he has done, places he has been. We often discuss things by text message; I think he finds that easier than spoken communication.

The phone record, including a record of where he and his phone are, may have other value as he gets older. Many cases of false imprisonment seem to involve people like him, people with such disordered memories that they can choose guilt for any crime. His prosthetic phone memory may protect him.

Judo moves on an atypical mind: Plan iMac

If you told me my 13 yo's measured IQ and reading levels 20 years ago I would not have received the news well.

Among other things, I might have assumed someone like him would be institutionalized.

In reality, things are more hopeful, interesting, and challenging. Whatever level he tests at, he seems to extract the information he is interested in from printed materials -- including newspapers. His reading interests are regrettably focal, but I can work with them.

He can barely print and his hand printed spelling is very poor. On the other hand, he's oddly good at old-style dumb-phone texting. There's something about tapping out each character that helps him slow down and process words. So I've given him texting privileges, and, each day, once school is out, I start texting him from my iPhone. I loathe the high cost of texting, but as an educational aid for my son it's extremely cheap. My superficially indulgent mobile phone experiment has been a robust success.

So how did he figure out the phone? How is he able to tweak every obscure setting despite the awkward UI? How did he learn to text? I can't explain this, any more than I can explain his peculiar game skills and non-verbal visual talents. All I can do is look for opportunities to leverage his strengths against his weaknesses. The struggle feels like a cross between dance and judo.

I've just introduced a new move. The early signs are encouraging.

First, some background. For years we've had to sharply restrict his TV access because he became agitated after watching commercial TV (he does much better movies and commercial-free DVDs).

Being TV free has disadvantages. Besides the loss of the electronic baby sitter (I'd use it if I could), I suspect he could learn from selected videos; his visual processing is far stronger than his auditory processing.

For similar reasons we've had to restrict his computer time, even though he has a relative knack for computer interaction. I have been amazed by his ability to bypass my home security measures. Recently he guessed an obscure password; I suspect he intuited it through a mixture of seeing it partly typed and then coming across it in a different setting. How can someone who tests so very badly be consistently breaking my computer security? There's something there I should be able to use.

So now I've made another Judo move. After years of restricting his computer access I've seemingly reversed course and created a "Learning" account on an iMac I've moved into an area we can supervise. This account provides him and his siblings unlimited access to homework resources, educational web sites, his email and twitter, encyclopedia, educational and scientific videos, iTunes U and the like. It does not, however, give him any access to the web sites and game software he loves to use. To get to that material he will have to hack through OpenDNS and OS X Parental Controls. A good challenge.

Today I saw him playing with Scratch, a visual programming language he learned in grade school. Interesting.

I'll report on how Plan iMac turns out.

Brain changes related to intense remedial reading programs

Remedial reading programs are common - but I don't think there as intensive as this paper published in Neuron ...

White Matter and Reading in Children - Health Blog - WSJ

... Researchers found that kids who were weak readers fared poorly on a common measure of white matter in a key region of the brain. But after 100 hours of intensive reading instruction, the kids showed significant improvement in white matter (and in reading). Similar children who didn’t get the intensive instruction didn’t show improvement. The study included 47 weak readers and 25 strong readers, and the kids were between ages 8 and 12...

The abstract doesn't tell us much about the reading program, and the full text article is not freely available at this time. I'd love to know what program they used.

The homework workstation account

My 12 yo is a computer problem. He has trouble getting off the computer when his time is up [1] and, if not supervised, he visits inappropriate web sites.

On the other hand, his computer skills are a relative strength now. In the future they'll be the foundation for the cognitive aides he'll live with for the rest of his life. So I want to build those skills.

He's long had his own user account on our MacBook, with OpenDNS filtering and Parental Controls logging. He can use that with close supervision, but it's not appropriate for lightly supervised homework.

So I've created a new "homework" account that's really locked down ...

Be the Best You can Be: A simple English wikipedia

... I subsequently configured a user account on the family MacBook restricted through Parental Controls to Tar Heel Reader and Simple Wikipedia. This is effectively a homework account, in addition to the web readers it includes Calculator, Grapher, Dictionary/Thesaurus, Google Earth, AppleWorks and the weather, time and calendar widgets...

The homework account is useable with much less supervision than a standard account. In time I might make this available to all the children without time restrictions.

--

[1] I do too, but I'd hope right off if I faced the consequences he gets. The inability to adjust behavior to consequences is one of the gravest disabilities for many "explosive" children. That's why the fights we have are also valuable. If he can learn to manage the timed computer intervals, then he will have acquired a critical skill. Lately he's done quite well with an iPhone Timer running next to him. He likes the look of it, and the way the numbers move down. Even the alarm sound works. With this setup, and years of struggle, he's doing pretty well. Timer skills are key for him, so this is a double win.

A simple English wikipedia

The Simple English wikipedia was designed for people learning English ...

Simple English Wikipedia

This is the front page of the Simple English Wikipedia. Wikipedias are places where people work together to write encyclopedias in different languages. We use simple English words and grammar here. The Simple English Wikipedia is for everyone! That includes children and adults who are learning English...

Of course simple words are also helpful for many special needs readers.

This resource is worth further exploration.

Update 11/21/09: My 12 yo is comfortable reading the simple Wikipedia articles. That's not to say he volunteers to read them, but he's willing and able to read them to earn stickers towards Wii or web time.

I subsequently configured a user account on the family MacBook restricted through Parental Controls to Tar Heel Reader and Simple Wikipedia. This is effectively a homework account, in addition to the web readers it includes Calculator, Grapher, Dictionary/Thesaurus, Google Earth, AppleWorks and the weather, time and calendar widgets.

There was one catch. Simple Wikipedia (and wikipedia) are not compatible with Apple's "Parental Controls". It took all my geekery to figure out a solution (see last update).

Understanding why reading is hard

I’ve been fascinated by the evolutionary neurobiology of reading since about 1980, when I was an exchange student at Williams College studying neurobiology. That’s when I realized that human reading was preposterously strange. It was a novel idea at the time, but I didn’t pursue it. Now, thirty years later, reading is finally being recognized as a bizarre human achievement.

I particularly appreciate this essay of Maryanne Wolf, hidden inside a NYT blog posting. Here she is concerned about how reading will develop as we move away from paper  …

Beyond decoding words – Maryanne Wolf (NYT blog Oct 2009)

Maryanne Wolf is the John DiBiaggio Professor in the Eliot-Pearson Department of Child Development at Tufts, and the author of “Proust and the Squid: The Story and Science of the Reading Brain.”

After many years of research on how the human brain learns to read, I came to an unsettlingly simple conclusion: We humans were never born to read. We learn to do so by an extraordinarily ingenuous ability to rearrange our “original parts” — like language and vision, both of which have genetic programs that unfold in fairly orderly fashion within any nurturant environment. Reading isn’t like that.

Each young reader has to fashion an entirely new “reading circuit” afresh every time. There is no one neat circuit just waiting to unfold. This means that the circuit can become more or less developed depending on the particulars of the learner: e.g., instruction, culture, motivation, educational opportunity. [jf: and individual biology, which she bizarrely omits from this list]

Equally interesting, this tabula rasa circuit is shaped by the particular requirements of the writing system: for example, Chinese reading circuits require more visual memory than alphabets. This “open architecture” of the reading circuit makes the young reader’s developing circuit malleable to what the medium (e.g., digital online reading, book, etc) emphasizes.

And that, of course, is the problem at hand. No one really knows the ultimate effects of an immersion in a digital medium on the young developing brain. We do know a great deal, however, about the formation of what we know as the expert reading brain that most of us possess to this point in history.

In brief, this brain learns to access and integrate within 300 milliseconds a vast array of visual, semantic, sound (or phonological), and conceptual processes, which allows us to decode and begin to comprehend a word [1]. At that point, for most of us our circuit is automatic enough to allocate an additional precious 100 to 200 milliseconds to an even more sophisticated set of comprehension processes that allow us to connect the decoded words to inference, analogical reasoning, critical analysis, contextual knowledge, and finally, the apex of reading: our own thoughts that go beyond the text.

This is what Proust called the heart of reading — when we go beyond the author’s wisdom and enter the beginning of our own.

I have no doubt that the new mediums will accomplish many of the goals we have for the reading brain, particularly the motivation to learn to decode, read and experience the knowledge that is available. As a cognitive neuroscientist, however, I believe we need rigorous research about whether the reading circuit of our youngest members will be short-circuited, figuratively and physiologically.

For my greatest concern is that the young brain will never have the time (in milliseconds or in hours or in years) to learn to go deeper into the text after the first decoding, but rather will be pulled by the medium to ever more distracting information, sidebars, and now,perhaps, videos (in the new vooks).

The child’s imagination and children’s nascent sense of probity and introspection are no match for a medium that creates a sense of urgency to get to the next piece of stimulating information. The attention span of children may be one of the main reasons why an immersion in on-screen reading is so engaging, and it may also be why digital reading may ultimately prove antithetical to the long-in-development, reflective nature of the expert reading brain as we know it…

Now if we could just figure out how to actually make some of this knowledge useful in teaching reading to children who struggle with it.

[1] Some very recent breakthroughs have expanded this understanding – The evolutionary wonder of reading – hints from intracranial electrophysiology.

Tar Heel Reader - online picture book library

Years ago I thought about starting a web site for friends and families to create short picture books for children with reading difficulties.

I never got very far, but, happily, the University of North Carolina went all the way (their reading center also sponsors the summer literacy program at Camp Courage Minnesota our son recently completed). I've read a few of these online picture books and they're really quite good.

Tar Heel Reader

... Welcome to the Tar Heel Reader, a collection of free, easy-to-read, and accessible books on a wide range of topics. Each book can be speech enabled and accessed using multiple interfaces (i.e. switches, alternative keyboards, touch screens, and dedicated AAC devices). The books may be downloaded as slide shows in PowerPoint, Impress, or Flash format.

You may write your own books using pictures from the huge collection at Flickr or pictures you upload....

... We have books that are intended for teenagers who are just learning to read. You may find some books that are inappropriate for your students; don’t use those. We recommend you learn about the Favorites page as a way to present your students with reading choices that you approve...

.... This site is a result of a collaboration between Center for Literacy and Disability Studies and the department of Computer Science at the University of North Carolina at Chapel Hill.

We'll see how well they work with our struggling reader.

I've asked them if they'll look into a version of the site optimized for an iPhone/iTouch.

Update: they have a blog, but as of 7/3/09 the feed doesn't work quite the way one would expect. Try this URL instead: http://tarheelreader.org/category/announcements/feed/. It worked for me.

Camp Courage Minnesota: Teaching reading to persons with cognitive disorders

I just came across this 2004 post (which I’d written, but forgotten) …

Gordon's Notes: Strategies for teaching reading to the cognitively disabled
… has a web site with lots of additional material...

Strategies for Teaching Reading to Students with Severe Disabilities
... Dr. Koppenhaver notes that, in his research … he and his colleagues found that the cognitive processes of learning to read for students with severe disabilities are almost identical to those of typically developing students. The only difference is in their ability to demonstrate skills through standard assessment measures.…

.. See also the UNC center for literacy and disability studies.

It reminds me to write about literacy programs for persons with cognitive disabilities.
Our son is enrolled this summer at Minnesota’s Courage Camps literacy camp from June 28 to July 3 (2007 description). It’s directed by Koppenhaver and his students …

… This unique session is for struggling readers (all disabilities), ages 12-18, who would like a positive literacy experience. Educators under the direction of Dr. David Koppenhaver and Dr. Karen Erickson, national literacy experts, will be working with campers to determine literacy needs and intervention strategies to begin to address those needs… Campers must be ambulatory and independent with self-care….

David Koppenhaver's web site is: http://faculty.rcoe.appstate.edu/koppenhaverd

Koppenhaver is one busy guy. My wife met with the camp director who’s also a paragon of productivity and energy.

We were concerned the camp would be a bit on the dull side, but the program is pretty appealing for an active teen. We don’t, however, underestimate the challenge of getting our 12 yo to go and stay there.

There really isn’t time for a large amount of reading practice, the core value is the individualized assessment and customized reading development program. The camp also trains local educators, several of whom will teach at Highland Jr High School where my son is going this September. At least one other MN Special Hockey athlete will attend.

Update 6/7/09: We visited the Courage Center Camp in May. It's an amazing facility. I hope to have pictures up and link to them. The camp has a twitter feed and a blogspot blog.

Update 6/26/09: The pictures are on a public Picasa web album.

Update 7/3/09: We're back from camp. The session costs us $800. I think the cost may be adjusted by income, but we're fortunate enough (really) to pay full freight. Our son had a very positive experience. It was his first extended time on his own, and he flew through it, largely taking care of himself. He did much better than we'd expected.

On the other hand, as a reading intervention it wasn't so hot. He tested out much worse than he has at school, which is very depressing. Was he fatigued? Not participating? Or is he truly unable to retain reading skills - or, even worse - are his cognitive abilities deteriorating? I hope it's the first two, but I do fear he rapidly loses reading abilities.

The test results, though tough to hear, are, obviously not a flaw of the program. I was disappointed, however, in how limited the recommendations and prescriptions were. I'm proud of myself for only presenting a glassy smile (ok, maybe a quick grimace) when we were urged to "read lots". (Honest, I didn't scream and I didn't rend my garments.)

We did get a useful referral to the Tar Heel Reader site, and we do know our money went to a good cause, so no regrets. I don't think we'll do it next year though. We need to come up with something different, and I think we'll have to do it ourselves.

Harcourt family learning series - useful

We've been using the Harcourt Family Learning Complete Curriculum books with our kids, including one child who's disabilities make reading and math pretty darned hard.

I'm happy with them. Amazon.com has a pretty good list of the books. The books were published by "Spark Publishing" (Flash Kids), but their web site is gone. I suspect they're no more. I can't find any evidence anyone else is publishing these.

The reading and math exercises are interesting enough and quite polished. The Grade 3 level readings are reasonably interesting to our 11 yo boy; it's tough to find that kind of age interesting/readable combination anywhere else.

Recommended if you can find 'em! We have the "complete curriculum" for grades 1, 3 and 4.

Lessons from gene deletions affecting learning and autism both

On the one hand, this article annoyed me. It demonstrates the usual confusion between association and causation, and it extrapolates from an exotic genetic disorder to the much larger group of children labeled as "autistic".

The reasoning errors, incidentally are not the journalist's. They come from the researchers. Researchers are as prone to this fallacy as anyone else.

On the other hand, it has some interesting hints. So I'll delete the worst parts, and focus on the interesting hints.

Autism Genes That Control Early Learning: Scientific American

A new genetic analysis of large, inbred Middle Eastern families... pinpointed six new genes that may contribute to autism ....

They report in Science that all of the linked genes are involved in forming new and stronger connections, called synapses, between nerve cells in the brain, which is the biological basis of learning and memory formation...

The researchers studied 88 families in which one or more children had been diagnosed with autism, and the parents of each autistic child were cousins. Marrying second and third—and even first cousins—is not uncommon in the Middle East...s

The team found a total of six mutations affecting genes that had previously not been linked to autism. The mutations came in the form of deletions, where part or all of both copies of the genes were missing in a child with the disorder. All of the genes are known to be involved in parts of the same process: creating and strengthening synapses...

...Walsh says the team believes these deletions—which in most cases found here only remove some, but not all, of the DNA that makes up a gene—may mean that the genes can regain some of their normal function. In fact, some of these genes may just be switched off. "This presents the possibility that in some kids we could get the gene going again without necessarily having to put it back in the brain," he says...

...Walsh notes that many children diagnosed with autism tend to show vast improvement when they are placed in environments that allow them to practice learning repetitively. He says that these activities essentially train the neurons to make up for their lost function.

From a science perspective it's another advance in studying neurodiversity, and it fits in the context that large numbers of "normal" people have significant neuro gene deletions.

From a parent's perspective, I was struck by the idea that these neurons can form connections, but they take a lot of persistence to form. In particular, highly repetive learning.

It's hard to do that kind of teaching in a conventional classroom. It bores most students and teachers to tears. This fits with our experience in trying to teach reading however ...

Garrison Keillor on education, ideology and learning to read

As of today I've written about 45 posts reading and cognitive disabilities. Since my wife and I are basically bleeding-heart liberals (for want of a better term), it's particularly sad that the liberal establishment has often been opposed to evidence-based education in reading. Even today, there's a strong remnant of 1960s era approaches to teaching reading in Minnesota's educational establishment.

Today, a local celebrity and certified liberal, Garrison Keillor, writes on the topic as only he can:

We're failing our kids | Salon.com

... And then there is the grief that old righteous people inflict on the young, such as our public schools. I'm looking at U.S. Department of Education statistics on reading achievement and see that here in Minnesota -- proud, progressive Minnesota -- on a 500-point test (average score: 225), 27 percent of fourth-graders score below basic proficiency, and black and Hispanic kids score 30-some points lower than white on average, and the 30 percent of public schoolkids who come from households in poverty (who qualify for reduced-price school lunches) score 27 points lower than those who don't come from poverty.

Reading is the key to everything. Teaching children to read is a fundamental moral obligation of the society. That 27 percent are at serious risk of crippling illiteracy is an outrageous scandal.

This is a bleak picture for an old Democrat. Face it, the schools are not run by Republican oligarchs in top hats and spats but by perfectly nice, caring, sharing people, with a smattering of yoga/raga/tofu/mojo/mantra folks like my old confreres. Nice people are failing these kids, but when they are called on it, they get very huffy. When the grand poobah Ph.D.s of education stand up and blow, they speak with great confidence about theories of teaching, and considering the test results, the bums ought to be thrown out.

There is much evidence that teaching phonics really works, especially with kids with learning disabilities, a growing constituency. But because phonics is associated with behaviorism and with conservatives, and because the Current Occupant has spoken on the subject, my fellow liberals are opposed.

Liberal dogma says that each child is inherently gifted and will read if only he is read to. This was true of my grandson; it is demonstrably not true of many kids, including my sandy-haired, gap-toothed daughter. The No Child Left Behind initiative has plenty of flaws, but the Democrats who are trashing it should take another look at the Reading First program. It is morally disgusting if Democrats throw out Republican programs that are good for children. Life is not a scrimmage. Grown-ups who stick with dogma even though it condemns children to second-class lives should be put on buses and sent to North Dakota to hoe wheat for a year.

St. Michael, I beg you to send angels to watch over fourth-graders who are struggling to read, because the righteous among us are not doing the job.

For more on this topic see:

• Be the Best You can Be Helping Struggling Readers Explicit phonics instruction
• Be the Best You can Be NICHD (NIH) director lecture on helping children to read (1999)
• Be the Best You can Be Florida school district tries to sort out commercial reading intervention
• Be the Best You can Be Teaching Reading Scientific American March 2002
• Be the Best You can Be Another study on the superiority of phonics
• Be the Best You can Be Overview of trends in reading -- the phonics renaissance
• Be the Best You can Be Teaching reading to special needs children The Parental contribution
• Be the Best You can Be Teaching reading to autistic children whole word approach (for a contrary perspective)
• Be the Best You can Be Teaching reading to autistic children a limited literature
• Be the Best You can Be The curse of special needs reading BORING books

Reading goes to the dogs

The Strib writes about reading to dogs in the Ramsey county library system:

Libraries pair furry friends with phonics: "The Ramsey County library system introduced the Paws to Read program last summer, when therapy dog owners approached library administrators about volunteering. So far, the library system has hosted programs in Roseville, Shoreview, Maplewood and now Mounds View."

Saint Paul's been running the same program for at least six months. We've been regulars at two libraries. I can't say that it makes a great difference for our children, but they do like it.

OS X: automated spoken summary of email messages

This post is about using OS X's built-in summary and speech functions for persons with limited vision, but it's probably broadly useful to anyone with language challenges.

Gordon's Tech: Email Summary and speech

.... My mother's vision is failing. This is something she could use, though I've already programme done key to active the built-in generic reading engine. Too bad Mail.app doesn't let me attach a script to a nice fat icon, but I might create a rule that would routinely read each message she opens. (Rules are hidden away in mail preferences -- which is not a logical place for that function.)"

Reading about autism and ADHD - our personal favorites

More than a year ago I started an "introduction to autism" post. I'll return to it some day, but I'd like to say something today about what we've read that, in retrospect, was most useful.

First, an important caveat. My wife and I are physicians. We don't bother with popular books with a medical emphasis because we know that stuff. So our reading is biased towards behavioral and legal topics.

We've read a lot over the years. You can click on this snapshot of our library to get a quick review of the books we've kept.

Not all the books are equally valuable however, and not all the most important reading has been in books.

There are two items that stand out. The first is a book, the second a throw away newspaper article.

The most important is Greene, The Explosive Child. This is from my Amazon review:

If I had to choose the most important book I've ever read, the one that most influenced my life, the one book I could not afford to have missed, it would be this book.

We read it about seven years ago. My marginalia sprawled from the pages to the back covers, replete with emphatic circles, arrows and double underlines...

...There are some quibbles I have. Time outs, for example, work well if they're used as calming interventions that last from seconds to a minute (even though we call them "punishments" since that's what our son prefers, they are only to allow him time to calm himself).

The fundamentals, are as sound as can be. I most appreciate the modesty I remember. Greenes is frank that not every child has a happy ending -- no matter the interventions. We're talking a serious struggle here...

... Even if you have a merely difficult child, or straightforward ADHD, or mere high IQ autism, or simple Asperger's, you should read this book.

If you have an explosive child, you must read this book...

The other one is very short. Yes, a NYT article about using 'extinction' in animal training.

I think of "extinction" when working with children as an advanced technique. It must be done in such a way that it does not induce anxiety, and the child has to be able to calm themselves when others withdraw. It doesn't work if the child will pursue aggressively, or react with destructive or dangerous behaviors.

It is, however, powerful.

Those are the top two. I also particularly remember Welcome To Alaska, one or more of Temple Grandin's books on life with high IQ autism, and Benjamin Pollis "Only a Mother Could Love Him" - an insider's guide to life as an explosive child with severe ADHD.

The rest of our reading is more routine. Any number of references on Personal Care Attendants or disability law will suffice.

Update 5/3/10: For the adolescent phase of special needs life, I like a book written about selling, sales, and persuasion: 3 Steps to Yes by Gene Bedell.

Free-reading: an open soure reading program

Oddly enough, I came across this via a Slashdot post:

Main Page - Free-reading: "Free-Reading is an “open source” instructional program that helps teachers teach early reading. Because it's open source, it represents the collective wisdom of a wide community of teachers and researchers. It's designed to contain a scope and sequence of activities that can support and supplement a typical “core” or “basal” program."

A while back I'd thought of developing a library of short stories that could be used in reading programs; including more boy oriented stories. They're doing something like this.

There's some content in place and it has a real advisory board:

Catherine Snow

Henry Lee Shattuck Professor of Education

Harvard Graduate School of Education

Michael Kamil

Consulting Professor of Education; Psychological Studies in Education; Learning, Design, and Technology

Stanford University School of Education

Barbara Taylor

Guy Bond Chair in Reading

University of Minnesota

Director of the Minnesota Center for Reading Research

Barbara Kapinus

Senior Policy Analyst

National Education Association

Fred Carrigg

Director of Humanities K-12, Middletown Public Schools

Former Special Assistant to the Commissioner for Literacy, NJDOE (2002-2007)

I think most of the contributors are teachers. They claim to have an evidence-based philosophy, that would mean a much stronger phonics orientation than is common in Minnesota.

Twin Cities: Groves Academy lecture on teaching reading to special needs children

Groves Academy is a fabulously expensive private school in the twin cities area for children with "learning, attention and language disorders". That list obviously omits autism spectrum disorders; my understanding is that they only take children with pretty good behavioral abilities and a 25 percentile or better IQ.

Their hosting a workshop on teaching reading to the "struggling reader". We'll find a way to be there:

John Alexander, Head of School at Groves Academy, will discuss what the latest research reveals about the teaching of reading, particularly with respect to the struggling reader. He will also discuss his participation on the state reading task force and the movement to change the core competencies of teachers who teach reading.

Tuesday, October 23, 2007, 7:00 pm - 8:30 pm at Groves Academy.

This workshop is open to the public at no charge. Continuing education credits will be provided. Please register in advance: call 952-920-6377 or email luffeya@grovesacademy.org

Fast ForWord reading software

I'm not a fan of computer software as a tool for teaching my elder son. We've tried a lot of different packages over the years, but I think the cognitive burden of interacting with the software steals cycles from the key tasks. He does best when engaged with a teacher or therapist who genuinely likes him (he's very good at telling who likes him). He does less well learning with his parents, which I think is not unusual for any child.

On the other hand, we're stuck.

He's not making progress on his reading. I don't expect him to start reading Kant anytime soon, but I'd like to get to 4th grade level. At this rate we won't make it before adolescence hits.

So I'm ready to try something different. I like his school, but I think we've run through every trick in their books. We contacted a friend who occupies a chair in developmental pediatrics at some place in Boston, and he connected us up with a physician researcher with a particular interest in reading. She suggested a look at "Fast ForWord®". No, it's not "Fast ForWard". The very name is an exercise in phonetic reading. I misread it a dozen times before I parsed the letters.

We looked over the videos and I was not exactly thrilled. "Construction Pig" and the other cartoon characters are just right for a six year old who's having trouble keeping up with first grade, but they're pretty misplaced for a 10 yo who really wants to see Count Dooku being decapitated (no, he's not allowed to watch Star Wars II and III, but I think they show the damned movies at his after school program).

Unfortunately there's not much hope for improvement on that front -- my very generous de facto consultant talked with the scientist who created the program and she basically said it's "construction pig" or nothing -- until a student graduates to a high school level.

In other words, the social context for the software is matched to the reading level. The target group is obviously children who are falling behind (no child left behind), but who have not left the train completely. In other words, it's not designed for special needs children, it's designed for mainstream kids whose age level won't be too discordant from their reading level.

Sigh.

In one of my real lives I'm a software geek, and in another real life I'm a business guy. I think given a combination of grant money and business funding I could peel off the language engine from the presentation layer and, instead of having a moose spray paint food I could have a generic golfer (ok, he'd be asian-african but wouldn't look too much like anyone you know) whack the ball -- the better the reading, the longer the drive.

Unfortunately I'm still otherwise employed. Did I mention we're getting desperate?

We'll give a try. Maybe a promise to allow a viewing of Star Wars II will offset the demoralizing cartoons. The web site lists several providers in the Saint Paul area in 5-6 businesses:

Janet Jacobs, CCC-SLP
Associated Speech & Language Specialists

Sarah C Hanson M.A., CCC-SLP
Associated Speech and Language Specialists

Ms.Susan Imhoff, MA, CCC-SLP
Children's Hospitals and Clinics-Roseville

Diane Sineps
Partners for Effective Communication

Jessica Chamberlain MA CCC SLP
Family Achievement Center, Inc.

Shiloh Ricker MS,CCC-SLP & Jennifer Jensen MA,CCC-SLP
Family Achievement Center, Inc.

Jennifer Jensen MA. CCC SLP

I have heard about the Children's Hospital program but I think the waiting list is pretty severe. Any success will require a lot of chemistry, flexibility and inventiveness, so we'll do some visits to learn more.

I'll post on what we learn.

Update 12/18/08: We didn't pursue this one, but I've gotten a positive review from a trusted parent source. So we're looking again.