Bereft

Andrew graduated high school in June and is now, all of a sudden, moving to Jimmy's group home.

Sad story: New York state has zero new group homes opening up for adults with developmental disabilities--and this at the very moment the children of the autism epidemic reach 21. The only adults able to enter the system are homeless and/or orphaned, and they're all on waiting lists. Andrew is getting in by the skin of his teeth because his brother lives in the home and Andrew was already 'in process.' All of which means we can't delay. We take this spot, or we take nothing.

I'm not ready.

I've spent the past two mornings crying, then recovering enough to get some work done.

I remember, several years ago, when my brother's firstborn was leaving for college. My brother and his wife were a wreck. I said, "Well, at least you have two kids still at home," and my brother said, "Right. We get to keep going through this over and over and over again."

Andrew is the third to leave home. Third and last.

Making it so much worse .... he doesn't want to leave. Jimmy didn't want to leave, either, but he was less verbal than Andrew and, after all, we still had two children at home. Hard on him, not as hard on us.

We've found a condo development we love (and that we can probably afford) that's just down the street from the group home, so we plan to be close by forever.

Still, it's not the same.

~~~~~~~~~~

I don't even know if this is the right thing.

But I don't see, immediately, what else we can do given the fact that we are not going to live forever, and given the equally salient fact that Ed will not be employed forever.

New York seems to be moving to a "system" whereby parents will essentially set up their own group homes with state support .... which so far means 80-year old parents living with tantruming 50-year old autistic people and trying to hire, train, and oversee staff at a time when they themselves are at high risk of becoming disabled if they aren't already.

The officially sanctioned idea seems to be that parents will buy an apartment or a house that becomes the developmentally disabled adult's permanent home.

I don't know whether the state helps with cost of purchase. Sounds like no.

I'm not at all against having such an option, but how many parents who've spent their lives raising a developmentally disabled child are now in a position to buy a second apartment or house in Westchester County, beyond the apartment or house they've living in themselves?

There is state funding available for staff to look after developmentally disabled adults living in parent-bought homes, but who's in charge of the staff?

Is it the parents?

And if it is, what happens when the parents are gone?

Plus: autism is neither simple nor intuitive. A high school graduate can't walk in off the street and know how to deal with a nonverbal autistic adult who has challenging behaviors and an eating disorder to boot.

But maybe there's something I'm not seeing here. I'm going to look into things as soon as I finish my book.

Nevertheless, I suspect what I'll really be doing is finding out that I need to engage politically.

The literature we've been given reeks of good intentions and person-centered ideology run amok.

Developmentally disabled adults must have their own private bedrooms!

Because having your own private bedroom is synonymous with human dignity!

So close down the group homes because adults living in group homes sometimes have roommates!

It sounds to me as if the day programs may be in danger, too.

Developmentally disabled adults have a right to employment in real businesses, outside the confines of sheltered workshops!

Because human dignity!

It's full inclusion for developmentally disabled adults but without the institutional backing or training for the people making all of it happen.

I despair.

No one has a right to employment in private-sector businesses, and the number of "discouraged workers" in prime working age (25-54) is at record or near-record highs.

When only 54% of high school graduates are employed, how exactly are aging parents running their own private group homes going to find private-sector employment for 100% of their developmentally disabled adult children?

And I'm just thinking about autistic adults at the moment, who tend to be hale and hearty. At least, my own two autistic adult children are hale and hearty. One of Jimmy's friends at his group home is in a wheel chair. His mother has diabetes & an infected leg, & she has had difficulty walking herself for several years now. How exactly are people in such circumstances going to get their wheelchair-bound adult child to a job at McDonald's?

~~~~~~~~~

I have to hang onto my hat.

We're incredibly lucky to have a loving home for Andrew to move to, where he'll live with his brother, with his father and me just down the street.

I need to hang onto my hat, figure out who's leading the charge, and join the ranks.

Andrew in August

For all of Andrew's^* life, until my mother died in January 2011, we went to Illinois every August. First to Springfield, then to Chicago. Always, without fail.

August is upon us again, and Andrew has been lobbying for his trip to Illinois for days now: lobbying Ed and me and, when that goes nowhere, searching for Chicago and "grandma's house" on Google.

Today his teacher^* sent home this list of sentences Andrew wrote on the computer at school:

I go to Staybridge on August 16th.
I go on the airplane.
First I go to camp.
Then I go to Staybridge.
I will see grandma in Staybridge.
Grandma's house is in Staybridge.
Staybridge is in Chicago.
I love Grandma.
Mommy and Daddy are going with me.
I have to pack my bags.

I have no idea how to handle this.

^* For passersby, Andrew is 19 years old and has autism. The references to Staybridge are to the Staybridge Inn in Springfield, our home away from home. 

Jeopardy

I hope some of you are watching Jeopardy.

Ben, the contestant who has won at least 5 days in a row, I think, looks very familiar.

Here he is.

This is funny:

With great intentions, he bought two “very thick books filled with lists of facts, and promised myself I’d read through them every night,” he says. “That lasted exactly one night. I can’t memorize facts very well. I spent a lot of time adding and subtracting large numbers with pen and paper, because I didn’t want to mess up the final wager, especially being a math major.”

Are Grading Trends Hurting Socially Awkward Kids?

There's a rather spirited discussion going on at the TheAtlantic.com regarding various questions raised by my article there. Some people are claiming that the demands of the 21st require students to work in groups and be graded on their presentation skills. Please weigh in if you have an opinion on this!

intense world and nonrandom numbers

I haven't followed autism research for longer than I care to admit....so I hadn't heard of the "intense world" theory. I'm fascinated to hear of it now because I've spent years thinking something along these lines. In fact, from time to time I've asked myself whether I would be willing to take a 'magic pill' that would cause me to spend one day being autistic, and to my horror the answer has always been 'no.'

I don't follow the reasoning in the final paragraph here, though...

You also write about neurological and psychiatric conditions that can alter consciousness, and suggest that autistic people might actually have more consciousness than others.

Autism is one of those odd-one-out conditions in the literature. The classical assumption was that most severely autistic children are mentally disabled and have low IQs, but that’s partly because they weren’t tested properly. If you test them on nonverbal IQ, they are normal or slightly better than normal. On other tests, they perform better than average for perceptual tasks. Some people are now suggesting that maybe it isn’t a deficit, that they have a different kind of [brain that has certain] advantages. With Asperger’s, which probably many prominent scientists have, whether they are diagnosed or not, it seems almost as if they have extra consciousness: they are better able to process information than normal, which I think is a fascinating idea.

The whole idea that autism is [primarily] a social disorder, I don’t think that theory is going to last into the next decade because there is increasingly successful treatment that centers on socializing that has turned very withdrawn children into very affectionate socially aware children: I don’t see that as fundamental [to autism].

Do you support the “intense world” theory of autism, which suggests that problems result from sensory overload?

I just think [the social issues] are a side effect of the way [people with autism] approach the world. They are searching for patterns and structure in the world — what they obsess over isn’t everything; it’s mainly structures, stuff like calendars and mathematical patterns.

I worked with the prodigy, Daniel Tammet. [Tammet holds the European record for memorizing the 22,514 digits in pi.] He seemed very extremely autistic as kid and has been officially diagnosed with Asperger’s syndrome, but if you meet him, he’s very socially aware. He maintains eye contact. He decided in his teen years to teach himself [to be social and he did].

In what context did you work with Tammet?

We did a brain scan study [where we looked at his brain after he had memorized short sequences of numbers that were either patterned or random]. It was very striking compared to normal people. He completely failed to spot the external structure [in the nonrandom numbers] and his brain activation was very different from those who were aware of the structure. I make the claim that the prefrontal parietal network is important for consciousness; in my study, the prefrontal parietal network was most active when spotting these patterns and maybe that means a lot about what consciousness is for. For Daniel Tammet, his prefrontal parietal network didn’t activate for these sequences because he didn’t spot them, but it was generally raised compared to those of normal people.

Why Solving Puzzles Is Fun: Q&A with Consciousness Researcher Daniel Bor
By Maia Szalavitz | Sept. 21, 2012

Pacific Child

Have just been introduced to Ira Heilveil, who writes about autism and the behaviorial treatment of autism at Pacific Child. Looks great, especially the post on top, which has to do with getting autistic children and adults to cooperate with doctors.

grade-skipping & STEM

ABSTRACT

Using data from a 40-year longitudinal study, the authors examined 3 related hypotheses about the effects of grade skipping on future educational and occupational outcomes in science, technology, engineering, and mathematics (STEM). From a combined sample of 3,467 mathematically precocious students (top 1%), a combination of exact and propensity score matching was used to create balanced comparison groups of 363 grade skippers and 657 matched controls. Results suggest that grade skippers (a) were more likely to pursue advanced degrees in STEM and author peer-reviewed publications in STEM, (b) earned their degrees and authored their 1st publication earlier, and (c) accrued more total citations and highly cited publications by age 50 years. These patterns were consistent among male participants but less so among female participants (who had a greater tendency to pursue advanced degrees in medicine or law). Findings suggest that grade skipping may enhance STEM accomplishments among the mathematically talented. (C) 2012 by the American Psychological Association
When Less Is More: Effects of Grade Skipping on Adult STEM Productivity Among Mathematically Precocious Adolescents.
Park, Gregory 1; Lubinski, David 1; Benbow, Camilla P. 1 | Journal of Educational Psychology | Print ahead July 9, 2012

My dad skipped a grade when he was a child. My mom always thought that was a mistake; she attributed his social awkwardness to that event.

Later on we all attributed it to what we believe to have been his undiagnosed Asperger syndrome.

I read the news today

Just got back from taking Chris to college, boo hoo. Not a day I was looking forward to.

Now, sitting down at my computer, I find this headline: Father’s Age Is Linked to Risk of Autism and Schizophrenia.

And this, in the body:

The age of mothers had no bearing on the risk for these disorders, the study found.

I read the words aloud to Ed, who said, "We're a long ways away from refrigerator mothers."

Terry

I heard a lot about Terry while I was at Morningside Academy's Summer School Institute.

Eric [Haugton, one of the creators of precision teaching] helped his wife Elizabeth plan for a kindergarten student named Terry Harris. Terry had cerebral palsy, and walked with crutches. Elizabeth was teaching him to write his name. It had taken from September to Christmas vacation to teach Terry how to write his first name. Elizabeth wondered if there wasn’t a better way to teach him to write his last name. Even though there were only four new letters to teach, it still seemed like a daunting task. Eric asked her if Terry could write 250 to 200 vertical stokes in a minute. Elizabeth mentioned that Terry was quadriplegic — Eric replied, “I didn’t ask what he looks like, Elizabeth — can he do 250 to 200 vertical strokes per minute or not?” Elizabeth admitted that she didn’t think so. “Can he do 140 to 120 zero’s in a minute?” Again Elizabeth said he probably could not. “Those are the elements that make up the compounds for every letter or number we write. If they are not fluent, then learning to write numbers and letters will fail.”

Returning to school Elizabeth and Terry spent the next three weeks working on strokes and 00s. Terry went from about 50 vertical strokes to over 175, and from 25 zero’s to over 90. “But Terry and I were getting tired of this drill, and we were ready to try going back to writing his name.” So they did; how long did it take for Terry to learn to write Harris?

Terry learned it in five minutes.

LESSONS LEARNED: Eric Haughton and the importance of fluency
Wicked Local Hingham | January 22, 2012

Autistic children often spend years learning the same things over and over and over again in school.

What would happen if all of these students were moved from "discrete trial"/80% mastery criteria to precision teaching/fluency training?

vision and vision therapy

Rickie by Frederic Flach

Seeing Through New Eyes: Changing the Lives of Children with Autism, Asperger Syndrome and other Developmental Disabilities through Vision Therapy by Melvin Kaplan

Dr. Kaplan was Rickie's vision therapist.

Katharine Beals in the Times

Wonderful letter:

Excluding the higher functioning [autistic] children [from the autism diagnosis] means that schools will have to do more to make regular classrooms hospitable to them without the early intervention based accommodations mandated by the Individuals With Disabilities Education Act. 

In particular, teachers will have to stop requiring children to work in groups, share personal reflections and do organizationally demanding interdisciplinary projects — all of which are challenging for the sort of child who, rightly or wrongly, has sometimes received a diagnosis of mild autism/Asperger. 

The new American Reform Math is also problematic for this population, since it waters down the actual math and teaches it less systematically. 

KATHARINE BEALS
Philadelphia, Jan. 23, 2012 

The writer is a lecturer at the University of Pennsylvania Graduate School of Education and the author of “Raising a Left-Brain Child in a Right-Brain World.”

is this a clinically-known hypothesis on autism?

when asked about the yelling, humming, hands over ears, etc., the girl in the video explains that it's because of a sensory overload, saying, "we create output to block out input".

my 21st century autistic son...

employing 21st century technology...

Who is Christopher Columbus? (Ask an Aspie)

"I don't know."

The revelation in question happened in late August, but I share it today in honor of someone who appears to be fading from America's k12 classrooms.

I actually wasn't that surprised when, while reading with J about the Age of Exploration in The Story of the World, Volume 2, it emerged that he didn't know who Christopher Columbus was. After all, one of the main reasons I've been working my way through this four-volume series with him is that I know he's picked up very little world history in the course of his 15 1/2 years. But, while he's still mostly oblivious to the incidental factoids that float all around him, he's increasingly attending to school, and increasingly sitting in the same classes, doing the same assignments, and taking the same tests, as everyone else.

So while I'm guessing that most (all?) of his schoolmates not only have heard of Christopher Columbus, but also know something about what he's famous for, I'm also guesssing that none of them learned these things from a social studies class or reading assignment that made them their focus.

Indeed, in this age where it's anyone's guess which facts our schools are making it their responsibility to teach, it occurs to me that students like J--with their narrow interests and their tendency to tune out most of the ambient information that others soak up without deliberate instruction--are a valuable resource. Next time you wonder whether your school is actually teaching (rather than merely mentioning in passing) the Bill of Rights (say), or the Cold War, or the Silk Road, ask an Aspie. That is, look for a spaced-out, narowly focused child on the autistic spectrum who hasn't made the topic their personal specialty, and see what he or she can tell you about it.

(Cross-posted at Out in Left Field).

Remind me not to travel in space

Lieberman’s joint research with medical school faculty, other colleagues, and Brown University graduate and undergraduate students have revealed a “syndrome” – a pattern of speech motor and cognitive deficits occurs [sic] that derive from impaired subcortical basal ganglia structures. Ongoing studies of Parkinson’s disease, childhood developmental verbal apraxia, Rolandic epilepsy, autism, hypoxic insult to the brain arising from exposure to extreme altitude as climbers ascend Mount Everest, and focal brain lesions provide an opportunity for both graduate and undergraduate students to participate in research. Other studies on speech production have synthesized the vowels that Neanderthals could have uttered. The findings of these studies have been applied to the diagnosis and treatment of these conditions as well as monitoring systems for exposure to high-intensity radiation in space travel, which produces damage to neural circuits involving the basal ganglia.

Philip Lieberman at Brown

I've spent the past year trying to figure out the basal ganglia. (pdf file)

In case you were wondering.

Bonus factoid: Here's what it sounds like when a Neanderthal tries to pronounce a long 'e.'

little sister

QUESTION: Your method may work with children with a native high IQ—but demanding that kind of excellence from less intelligent children seems unfair and a fool's errand. Demanding hard work and a great effort from children is the best middle ground we can reach philosophically, isn't it? Your thoughts?

Jokes about A+s and gold medals aside (much of my book is tongue-in-cheek, making fun of myself), I don't believe that grades or achievement is ultimately what Chinese parenting (at least as I practice it) is really about. I think it's about helping your children be the best they can be—which is usually better than they think! It's about believing in your child more than anyone else—even more than they believe in themselves. And this principle can be applied to any child, of any level of ability. My youngest sister, Cindy, has Down syndrome, and I remember my mother spending hours and hours with her, teaching her to tie her shoelaces on her own, drilling multiplication tables with Cindy, practicing piano every day with her. No one expected Cindy to get a Ph.D.! But my mom wanted her to be the best she could be, within her limits. Today, my sister works at Wal-Mart, has a boyfriend and still plays piano—one of her favorite things is performing for her friends. She and my mom have a wonderful relationship, and we all love her for who she is.

Tiger Mother Talks Back
January 15, 2011

Time

My dad died this week.

Didn't see it coming.

My mom reminded me that she and my dad stayed at our house when I was pregnant with the twins. Or maybe it was right after I had the twins, I don't remember. Every morning, Jimmy would get in bed with them and wake my dad, whom we all called Bob, because that was his name. We called my mom Pat & my dad Bob.

After a few days, Bob left to go back home and my mom stayed on.

Every morning after that, Jimmy would get in bed with my mom and chant, "No more Bob, no more Bob."

Back to Illinois on the weekend for the funeral.

LexAequitas on SAT Critical Reading

LexAequitas:

“As an instructor for TPR for several years, I had a breakthrough on the reading passages at one point after I made a realization. I was good at verbal sections before, generally able to complete them in just over 20 minutes with a 750+ score, but after the instructor training I could complete them in 11 minutes with a perfect score.

The SAT is rigorously vetted, and constantly challenged. For every answer, there needs to be a detailed explanation that ETS can just mail off to every student who challenges the question. They come up with these before the test is ever given. This means there *has* to be something that can be pointed to in order to differentiate answers. On difficult questions, it will be minor, even picayune. And I don't mean picayune in the normal sense, I mean picayune in the sense that you'd better start thinking like a 13-year old with Asperger's syndrome. Don't accept generalizations that people use in speech and writing all the time just to make communication more efficient.

It's also worthwhile to note that the SAT does not typically select great literature. The writing is often clumsy and arcane, and this is part of the challenge. I suspect a better exercise if you want casual reading that mimics the SAT is to pick foreign translations.”

This is fantastically helpful.

satreading
And fascinating on many levels....

more Big Calendars

If you scroll down, there's a picture of Andrew studying the Big Calendar.

He's sleeping in this morning, but as soon as he's up I'm going to cross out Sunday while he watches.

words to the wise

9pm now; Andrew is still wearing his backpack

A while ago I heard Ed say, "School starts in one week, and you never go to school on Sunday."

I'm sure that fell on deaf ears.


Big Calendar
Debbie Stier's big calendar
the big picture
blank calendar template (pdf file) 
self-charting increases motivation