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.

group home 3.24.2009

first night

Behind the Wheel

Interesting thing (must get lefty to weigh in on this).

Normally, Jimmy chants all the time.

He's chanting right now, in fact. Did you pour? Did you pour? You're not playing with the hose. You're not playing with the hose. Want that. Want that. You started cry. You started cry. You're not playing with the hose. You're not playing with the hose. Later. Later.

You're not playing with the hose is an Andrew thing. Andrew likes to play with the hose, which he calls water rope on his Neo; when it's 20 degrees outside Ed likes Andrew not to play with the hose. Hence: you're not playing with the hose.

Point is: the chanting is constant.

Driving home from White Plains this afternoon, though, listening to Behind the Wheel's native speakers banging on about I would like to get a job with more vacations but I can't now and I am sitting down on the floor in front of my television set, I realized Jimmy had fallen silent. When I looked over at him I saw that he'd closed his eyes & seemed to be listening, a small smile on his face.

Now I'm thinking of getting a Pimsleur CD (a secret of the FBI and the CIA for years!) to send along to the new home, maybe.

And I'm trying to think whether he chants when he's watching TV.

Jimmy

group home, part 2

Jimmy is moving to a group home on Monday, and I am so sad.

Christian and C. keep saying, "It's like going to college."

Sort of, I say.

It's like going to college except he's 21 and it's a group home.

Not that shipping C. off to college is going to be any better. Last summer my brother's eldest was leaving for college and his parents were awfully stressed. They're both solid Midwestern types, so they weren't saying they were stressed; it was just there, hanging over us. I felt majorly stressed on their behalf, for pete's sake.

At one point I said to my brother, "Well, at least you have two more kids at home," and he said, "Oh, great. I can just keep going through wave after wave of this."

If you knew my brother, you'd understand just how horrifying an image that is: this big, solid, kind Midwestern guy -- a rock -- talking about waves upon waves.

Maybe I'll keep Andrew with me for all time.


group home

group home

We just left Jimmy at the group home he may be moving to.

When I left, he gave me his sweetest smile.

I wish I had a picture.


education & mortality (& being the parent of an autistic child)

what to do when your kids get taller than you

The Professional Chef's Clogs at Hammacher Schlemmer

education & mortality (& being the parent of an autistic child)

Prior research has uncovered a large and positive correlation between education and health. This paper examines whether education has a causal impact on health.

[snip]

This paper has shown that there is a large causal effect of education on mortality. While GLS estimates suggest that an additional year of education lowers the probability of dying in the next 10 years by approximately 1.3 percentage points, my results ... show that the effect is perhaps much larger: at least 3.6 percentage points. Moreover there is a direct effect of compulsory schooling laws on mortality during adulthood: one more year of compulsory schooling decreased mortality after age 35 by about 3%.

[snip]

To better understand the impact of education, I calculate how this effect translates into life expectancy gains. I find that in 1960, one more year of education increased life expectancy at age 35 by as much as 1.7 years (using the OLS estimate). This is a very large increase.

[snip]

This evidence that education increases life expectancy implies that the returns to education, measured only in terms of earnings increases, substantially underestimate the true returns to education.

The Relationship Between Education and Adult Mortality in the United States
Adriana Lleras-Muney
January 2004

Reading The Race Between Education and Technology has led me to think about the relationship between education and being the parent of autistic kids.

Jimmy is 21. When he was diagnosed, no one knew anything about using meds in autism, and everyone was against it. Parents were horrified by the idea, and psychiatrists in Los Angeles routinely told us there were no medications that could treat the "core symptoms" of autism. I remember going to all the parent meetings & hearing that: can't treat the core symptoms of autism.

One shrink in particular ticked me off. I heard him speak in someone's living room. There was nothing medicine could do, he said confidently; the core symptoms were untreatable. News flash.

I didn't like him. I didn't like the cowboy boots he was wearing, I didn't like his twitchy manner, and I didn't like the way he slouched in his chair. I especially didn't like his air of certainty, and I was appalled by the fact that he appeared to consider himself cool. If you're going to tell me there's no hope, don't be cool while you're doing it.

How did this "core symptoms" business make sense, anyway, I wanted to know. Granting that severe mood swings and 4-hour tantrums aren't core symptoms of autism, wouldn't it be a good thing for a child not to have 4-hour tantrums?

Ditto for being unable to sleep more than 4 to 8 hours a night at an age where other kids sleep 12. Yes, sure, raging insomnia isn't a core symptom of autism, but so what? Is raging insomnia good for a 4-year old with autism?

Amazingly, I once had a doctor tell me that raging insomnia was perfectly fine for autistic kids. "These children don't need a lot of sleep," he said.

I thought that was a crock.

I was right. I was so right that in 4 years' time the twitchy psychiatrist in the cowboy boots, who had become Jimmy's doctor when our insurance stopped covering the Encino psychiatrist we'd been seeing, did a fantastic job treating Jimmy with meds.

His one truly brilliant move, when we came to his office panicked because a year of Risperdal-created peace was unraveling, was to say to us, "I'm all out of tricks, my black bag is empty. But sometimes just getting more sleep can help."

He prescribed trazodone and Jimmy had a breakthrough: in mood, in behavior, in functioning. And in sleep. Sometimes a twitchy guy wearing cowboy boots is your kid's future best friend.

That was our second medical breakthrough.

Our first had come the year before, when I was pregnant with the twins and Ivar Lovaas had told Ed we needed to place Jimmy outside the home. Jimmy was 7 years old. "You're going to have two other children to think of," Ivar said. "You have to consider your whole family." He wasn't alone in this view. Jimmy's school principal dropped broad hints that the time had come, and our SPED attorney asked if we wanted to request a residential school.

My therapist asked me, point blank, "How would you feel if Jimmy killed one of the babies?"

"Jimmy isn't going to kill one of the babies," I said. When I left her office, I called my best friend from the pay phone in the hall. "Are my friends saying Jimmy will hurt the babies?" I asked. "Are you all afraid to tell me?"

Her voice was so gentle and kind when she answered. I get tears in my eyes writing this now.

"No," she said. "No one is saying that. Everyone is incredibly worried how you're going to manage Jimmy and two babies. But no one is saying Jimmy will hurt the babies."

I never spoke to my therapist again.

Things got worse before they got better. The Northridge earthquake happened in February just after we'd begun construction on an extra bedroom; the house was a shambles and we had construction workers everywhere -- construction workers who were feuding with each other on site, to boot. The pregnancy had been high risk to start and within a few months most of the bad things that can happen to a high-risk pregnancy did happen. By the end of the 29th week I was in labor and in the hospital mainlining magnesium sulfate. We were facing the possibility of having three disabled children to care for instead of just Jimmy.

We had one person left to turn to. Our doctor, the one in Encino.

That doctor had told us there was a new drug for schizophrenia coming on the market that he wanted to try with Jimmy. Risperdal. It was different from the old antipsychotics, he said. By the time Ed saw him again, with me in the hospital and Jimmy out of control at home, Risperdal was available and the sales reps had made their rounds. Our doctor ransacked his office, pulling out every sample packet he could find and handing them to Ed, who stuffed his pockets full and carried the rest out in his hands. He drove straight to Osco's to fill the prescription before going home to Jimmy and my mother.

The Risperdal worked. With his first dose, Jimmy calmed, the tantrums dropped to nothing, and for the first time in his life he had a bedtime. Ed could read him a story and tuck him in bed and he stayed there and he slept.

Later on I told this story to one of the founders of the National Alliance for Autism Research, who was himself a psychiatrist and the father of an autistic child. He frowned and looked puzzled for a moment, then said, "Jimmy had to have been one of the first children in the country to take Risperdal."

He was.

Risperdal is a tough drug to take; it's nothing to fool around with. It is also a miracle drug, or was for us. On October 6, 2006 it became the first drug to be approved for the treatment of "irritability associated with autism." I believe that Risperdal, along with the other atypical antipsychotics, has produced a new generation of young men and women Jimmy's age who are living in the community instead of in back wards, in restraints, which is where Jimmy was headed.

Claudia Goldin and Lawrence Katz's observation that educated workers are early adopters has stayed with me. With autism, Ed and I have been early adopters.

Being an early adopter in the realm of psychotropic medications administered to your 4-year old is different from being an early adopter of an iPhone. We knew no one who was using meds, and we knew many who thought we were crazy or worse.

To be an early adopter with the big things, you have to be unshakably confident in your ability to listen, read, and think. You probably have to be as confident as the shrink in the cowboy boots, who turned out to be confident for a reason: he was good at his job. He didn't know what he was talking about with the core symptoms business; that was malarkey. But he could look at a child, talk to the parents, prescribe a medication off-label, and make it work. He was an early adopter, too.

Risperdal saved Jimmy's life. When Jimmy was 4, the social worker at the Regional Center told me, "I can see that you and Jimmy have a very close relationship. But in a few years, you will come to me for a placement."

I didn't, but she wasn't wrong. Three years later, the experts in our lives agreed that it was time.

That Jimmy's life turned out so differently is a tribute to education: to the education of the psychiatrists we've worked with for nearly 20 years, to the education of the teachers and behavior analysts who taught Jimmy and us, to the education of the research scientists in their labs, and, not least, to the many years of education Ed and I had when we were young.

Being educated ourselves, we were able, often enough, to know a good idea when we heard it.

We could spot malarkey, too.

on the other hand

re: vacation from the vacation

On the other hand, I got to see Susan S' new house - beautiful!

And spend 5 minutes on the phone with Karen H.

And the Lincoln Presidential Museum is fantastic! We didn't really see the museum, unfortunately, because Andrew melted down the minute we set foot inside the "White House" and things got worse from there. Some guy accused Andrew of trying to "boost" his camera; then, in the "war room," a group of touring Asians kept swiveling around and craning their necks to get a look at Andrew and me in our hiding place off the main room, where I'd taken him to try to minimize the disruption to everyone else's Presidential Museum visit.^* Andrew was by then slapping himself violently in the face while I tried to hold his hands and figure out what a behavior analyst would do.

Finally I gave up and did what a parent would do, which was send Andrew outside with his father so I could purchase tourist merchandise from the gift shop in peace.^**

So we didn't see the museum, but we did see the documentary about Lincoln's life. It's a Sensurround-type deal, with flashing lights, rumbling seats, and extremely loud, sudden, explosion noises that seemed designed to overwhelm anyone with the slightest degree of sensory overload.***

Andrew was rapt.

He sat perfectly still in his seat, gazing at the screen, his hands clasped together as if in prayer. Jimmy had his eyes closed and his head down; he looked like a tortoise without a shell. I was jumping out of my chair & shrieking at every crack of fake cannon fire and every clap of fake thunder.^****

Andrew was transfixed.

Afterwards Ed and I realized that for Andrew the documentary must have been like PBS with sound effects.

...............................

^* I specify "Asians" because we have Japanese friends here who tell us they can't return to Japan because of the stigma attached to having an autistic child there, and because another Japanese family here in town stopped speaking to us and canceled a play date invitation to Christopher when Ed revealed that C's brothers have autism, and I've generalized from those experiences. The fact is I have no idea why the Lincoln Museum tourists were staring at us, but I felt Andrew and I had to go. I apologize to any foreign nationals who find this account insulting or hurtful. On the other hand, the camera-booster guy was in the same room with the tourists when we came in, and he scrammed out of there as soon as he saw us. Good.

^** This sounds snarky, so I need an asterisk. The movie is wonderful, and the sounds effects - and hologram! - work. The whole museum is wonderful; Ed (for newbies: Ed is a historian) thought so, too. He liked it so much he wanted to go back alone.

^*** two Presidential Museum mugs and a matching Presidential Museum t-shirt & baseball cap

^** My startle response is getting way worse with age, and no one seems to have the slightest idea how to fix it.

help desk - medical

This is way, way off-topic, but I'm posting in case anyone has experience in this area.

We've had a medication snafu with Jimmy.

I was trying to boil the med snafu down to one sentence, but now that I've surfed some web sites I see that boiling it down isn't working.

As briefly as I can put it:

• Depakote is an anticonvulsant Jimmy takes to control a very mild seizure disorder.
  
• To work, Depakote has to be maintained at a certain level in the blood.
• Jimmy takes one dose of Depakote a day, always at bedtime.
  

The snafu:

• Last night Ed discovered he had probably given Jimmy his nighttime dose of Depakote that morning by mistake (we were out of town, pill box was turned upside down in suitcase, etc.)
  
• At that point we decided to skip his bedtime meds because he'd already taken them that morning.
  

So here's the question.

What should we have done?

And what should we do now?

I just picked Jimmy up from school, where he fell asleep during speech therapy and couldn't be aroused. Then, in the nurse's office, he woke up, "fell asleep," woke up again, fell asleep again, etc. His behavior was pretty close to what you'd call passing out, not falling asleep.

He's acting fine now.

The nurse says her intuition is that, in the case of Depakote, it's probably better to overshoot than to undershoot, but she doesn't know.

Does anyone have experience with this?

We've emailed his doctor, so we'll have professional advice shortly. But if anyone has experience or knowledge I'd like to get it.

Thanks!

Wholes, not parts

From the new superintendent of Ridgewood, NJ:

... constructivist teachers structure lessons around big ideas, not small bits of information. Exposing students to wholes first helps them determine the relevant parts as they refine their understandings of the wholes.

source:
The Courage to Be Constructivist
Martin Brooks

Right.

Always good for the student to "determine the relevant parts."

Determining the relevant parts being one of the most difficult tasks in teaching and writing, let's hand that off to the student.

I think I've mentioned that I spent many years at sea after Jimmy's autism diagnosis. The disorder itself is bewildering, and the world that surrounds it is pretty well captured by Susan F. Rzucidlo in her short piece, Welcome to Beirut, a parody of Emily Pearl Kingsley's classic Welcome to Holland.

Susan R. beat me to the punch, btw. Almost from the time Jimmy was diagnosed, Ed and I had joked about writing a short piece we were going to call "Welcome to Beirut," and then someone else went and did it.

So.... read a few paragraphs of "Welcome to Beirut" and tell me how a person goes about determining the relevant parts in the middle of a shooting war.

I was a model learner.

I was reading everything I could get my hands on, I was attending conferences, I was taking Jimmy to doctors and therapists and special educators, I was constructing knowledge right and left, or trying to ...... and I remained deeply confused.

Then Shirley Cohen published her book. She had planned to call it "A Map of Autism," and that's what it was. Or, rather, it was a map of the world of autism: the advocates, the educators, the theorists, and the desperately mourning parents. What were they all talking about? Until Shirley wrote her book, I didn't know.

She picked up all the autism pieces -- the many moving parts -- that littered every surface of my house and life, polished them until they shone, and stacked and arranged each one in its proper places on tidy shelves she'd built after a lifetime studying the education of children with special needs.

At the end of her very short book, I saw. I don't know whether I can still find a copy of the review I wrote for Targeting Autism, but I do remember the last line: Shirley Cohen's book is a gift.

So.... I have to assume that Martin Brooks has never had to confront a "whole" in the shape of his own severely handicapped child. Shirley's book appeared in 1998; Jimmy was then 11 years old. He had been diagnosed at 4, and I had spent 7 years of my life trying without success to determine the relevant parts.

I often have the feeling that constructivism is not a very nice thing to do to children.

Maybe those 7 years after Jimmy's diagnosis have something to do with it.


wholes, not parts: Martin Brooks and The Constructivist Classroom
whole math
top-down teaching