When I get a minute I'll write about the workshop I attended sponsored by the New York State School Boards Association, wherein I felt like a mole. It was on the new version of IDEA that'll take effect in July. A trip down the rabbit hole, sitting there.

I'm really not much on writing about policy: so many other people do it better than I. The post at 11D is raising my blood pressure (In Praise of Thomas Sowell, basically). Here's the thing: we can't do randomized controlled trials with our children. No, I haven't looked at the research on speech therapy. But I've looked at plenty of research on ABA, and there's absolutely no question in my mind that intensive therapy by qualified professionals (which it sounds like Laura doesn't have) beats lack thereof. Life-alteringly beats. Neuroplastically beats. One or more SD's in IQ points beats.

I've spent the last six years having relatives ask me, "Do you think maybe she could have made this progress WITHOUT all the therapy?" Honestly, no. And I can't go back and undo the therapy to check, and I wouldn't want to. Granted, we were lucky: the form of PDD my kid has is quite mild. She has strong social drive, and she has normal intelligence. I've had more than one consultant not pick her out of the group as autistic. But I also remember the echolalic, spaced-out kid who didn't care when my aunt walked into the room, played with rocks instead of other kids when given the choice, and had her pronouns reversed until she was past four. I could tell she wasn't connecting. That wasn't mother's intuition: that was my own perception based on observation. I knew. And I knew I didn't know how to help her, despite the fact that I'm her mother, she was my first child so I spent ALL of my time focusing on how she thought and what she was doing, and I have a background in teaching and learning issues.

Here's what I worry about: somebody reading Laura's post and thinking, "Eh, it's the system. It's not my kid." Except your kid has to LIVE in the system. If not the school system, the work system. The social system. And we can labor to change things, but we can never labor hard or fast enough for our children that we have RIGHT NOW.

Magic and Loss

He disappeared in the dead of winter:
The brooks were frozen, the airports almost deserted,
And snow disfigured the public statues;
The mercury sank in the mouth of the dying day.
What instruments we have agree
The day of his death was a dark cold day.

Far from his illness
The wolves ran on through the evergreen forests,
The peasant river was untempted by the fashionable quays;
By mourning tongues
The death of the poet was kept from his poems.

But for him it was his last afternoon as himself,
An afternoon of nurses and rumours;
The provinces of his body revolted,
The squares of his mind were empty,
Silence invaded the suburbs,
The current of his feeling failed; he became his admirers.

Now he is scattered among a hundred cities
And wholly given over to unfamiliar affections,
To find his happiness in another kind of wood
And be punished under a foreign code of conscience.
The words of a dead man
Are modified in the guts of the living.

But in the importance and noise of to-morrow
When the brokers are roaring like beasts on the floor of the Bourse,
And the poor have the sufferings to which they are fairly accustomed,
And each in the cell of himself is almost convinced of his freedom,
A few thousand will think of this day
As one thinks of a day when one did something slightly unusual.

What instruments we have agree
The day of his death was a dark cold day.

From W.H. Auden's "In Memory of W.B. Yeats."

Because it's my blog, and I can: I love these lines from "For John, Who Begs Me Not to Enquire Further":

Not that it was beautiful,
but that I found some order there.
There ought to be something special
for someone
in this kind of hope.
This is something I would never find
in a lovelier place, my dear,
although your fear is anyone's fear,
like an invisible veil between us all...
and sometimes in private,
my kitchen, your kitchen,
my face, your face.

Well, after looking at my last post below (which Blogger screwed up), is there any question there's a nice toasty niche somewhere in Hell just waiting for me?

Blogger's not working: keeps sending me a message when I try going to my account saying it has no data. Everybody's a critic.

* * * * *

Can I just say how sick unto death I am of dealing with people's defective personalities? I just got off the phone with some beeyotch who's called me like three times re her son's' scholarship. Each time, I told her what to do. She called me like two weeks ago. I left a return message and promptly forgot her. So she calls back all attitudinous saying she'd left me a message. Yes, I say, I called her back. I never got it, she says, all huffy. Well, I returned your call, I say. Her hobby is being slighted by people, so I guess this was another gem to add to her collection. Whatever. Asshat.

Larry Summers, Dumbass

Schadenfreude reading the Times the past few days. I don't for a minute think that Summers "thinks less of us," as one reductive-minded Harvard student was quoted as saying. I am amazed that he was stupid enough to play the role of provocateur and open that particular can o' worms (re women, biology as destiny, and the number of women in the sciences). Where could that discussion possibly go? Assuming there even is anything to a determinist argument re women and science, where could that discussion possibly take people? And it's an argument anyone could demolish in two seconds: with a more level playing field, what are the percentages of women winning, say, Intel awards? And how could biology possibly account for the rapid diminution in the number of women at each stage of the pipeline?

Though I have to say, the figurative language swirling around this particular controversy is so over-the-top: a tsunami? How could anyone dare use that language right after what just happened? I've always HATED that kind of promiscuity and carelessness of figurative use. It's so cheapening--reminds me of the way the right to life movement attempted to appropriate the language of the Holocaust.

[seguing] One of the weirdnesses of American life is how irrelevant intellectual and academic life seem, when college, especially admissions, are seen as so critical. How many parents whose kids are applying could even name the president of Harvard?

She's walking around the house taping "Kick Me" signs to the menfolks' backs and laughing hysterically. She went over to Secundo and said, "Come here. You're my favorite brother. Let me pat you on the back." Good theory of mind, albeit not in the service of the worthiest cause.

The behavioral person came to the house today to talk about the plan she'd set up, which was like a seven-page document with appendices and stuff. It had an allowance system, procedures to follow, background, discussion about contracts to be created, all kinds of stuff. An impressive document, all centered around getting an eight-year-old to behave herself and stop sending a cloud of radioactive bad mood all over the house.

Also, behaviorists Get It. They see my kid growling in disapproval (which she does, a lionlike sound), and they say, "Growling, huh," and they get these thoughtful looks on their faces, while they're clearly mulling over the question, "How do we develop a TBR plan for the growling?" (Targeted Behavior for Reduction=TBR). Which is better than the happy talk I get from the school: "Oh, my child growled. In fact, he howled and smeared feces. She's just being a kid."

Also also, most of behavioral analysts/therapists/whatever I've met can't spell or punctuate for shit, and I'm hypersensitive to those things (I guess there's not that much overlap with people who majored in English undergrad), and I've learned not to care. They don't know what a common splice is, and I don't know how to get my kid to behave. We can contemplate and complement each other's expertise.

So I had to buy a baby present for my Orthodox relatives (um, it was actually after shabbes when I went shopping. I think). And I had about 12 minutes to shop before the store closed. But somehow in that time I found the baby present (three minutes--I shop fast and they had a good selection) and got Prima something: a pink hoodie that says, "It's All About Me." Which it is, you know. That and flirty colors for spring, but mostly it's about her.

To my friends who wrote and told me yes, you're reading, thanks--that was sweet of you. :-) Also, I gather the comments don't work on this thing. Whatever. We're not talkin' a vast readership, anyway.

Wonder if I can change the name of this blog to Nobodyreadsmyblog.com--wonder if that domain name is taken.

More fun at the Board of Ed meeting. One woman went on at considerable length about how testing matters and she knows that it's the way many people get jobs, and her children are getting a fine education, what with the gifted program and the chess club, but the scores are low, and maybe the special education kids shouldn't be included. At least she's honest about her ignorance and bias.

That was right after the crazy putz who's trying to get through a referendum on universal busing rambled on about his referendum (he doesn't want it, and he's said in conversation that abductions can happen anywhere; why should universal busing prevent them?). So many people to hate, so little time.

Vintage dress website. If you click on this link, it takes you to this funky (and not in a good way) dress by Mr. Blackwell, which has trim that the site raves about but which to me suggests Victorian funerary detail and Edward Gorey. The site is otherwise no end of fun, esp. if you want to buy movie star memorabilia: I mean, who wouldn't want to dress like Agnes Moorehead? I'm actually madly in love with some of the vintage clothing, especially a Dior suit, Norell coat dresses, and Courreges coats.

Some really weird shit in Lenny Schafer's report today, yo. He's on a tear about diagnosis and who's "really" autistic or not. I'm not a big one for purity tests or loyalty oaths. The DSM-IV diagnostic categories are an unholy mess, it's true: the criteria for autism are for infantile autism, or Kanner-type autism, or classical autism (Mozart, anyone? He's been so rumored). This makes for, um, confusion, since autism is also a spectrum disorder. Which means that there are degrees and kinds. My favorite quote on the subject: Stephen Shore, "When you've met one person with autism, you've met one person with autism." So my kid had a language disorder, not a delay. This was a qualitative communication impairment. Was she better off than a kid with a severe speech delay? Depends on what happened once/if the language finally came in. She debatelessly had a disability that affected her ability to interact with other similar mammals in her environment and her ability to learn from aforesaid environment. Am I pinning a diagnosis on a kid who didn't need it? Fuck that.

Is Asperger's different from autism as defined in the DSM-IV? Sure. But we're talking about academic constructs. Clumsy ones. With confusing names, which is why you have shit like PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified). Which means, basically: some of column A, not enough of column B, and not your typical person neurologically.

Kids with greater impairments need more intervention. A person with some Asperger traits should not presume to speak for all people with autism, especially those who quite literally cannot speak for themselves. But don't be telling me that my kid's issues don't count: I think one of the big shames is that parents of kids w/Asperger's look at things like ABA and think, "Nah, my kid doesn't need that. That's for kids with REAL impairments." Asperger's, HFA, and PDD are real impairments. Not alternate ways of being: qualitative impairments in ability to attend to the world and learn from it. Doesn't mean I want a different kid (take that, Jim Sinclair and Valeri Paradiz). Doesn't mean I don't accept her as is: she is perfect, thank you very much. It means that there are very specific things she is going to need help with.

Okay, done ranting. Found this interesting-looking Asperger video mentioned in an online list.

Well, this article on the Catholic Church and Jewish children is horrifying. Not surprising, but horrifying. I'd always rather liked John XXIII: this is v. disappointing to read.

Rosemary Kennedy

, may she rest in peace. There's a whole awful history of disability in the last century in her biography: the botched delivery that probably led to her mild retardation, the secrecy about her disability, the hideous medical procedure (because who knew about behavioral intervention, ach). I did a little webcrawling and came across some fantastically hateful stuff--unsurprising, I guess.

Though last night I was reading about Helen Keller to the kids, and I was thinking about how astoundingly progressive, really, her family and education had been: the hero in Helen's story is Teacher, but what about the parents who took her to doctor after doctor, specialist after specialist, to get help for their little girl?

Justice deferred....
So many years...

There's a fight going on in the Comments section of Wampum re the bloody Times article on "curing" autism. Some idjit seems to have read Michelle Dawson and decided she represented an authentic voice for autism. I'm somewhat concerned that this will end up setting some b.s. terms of debate in whatever passes for the public mind. The thing I was thinking of when I was reading the "discussion" (impassioned attempts to argue followed by puzzled responses that the replies were so emotional: these fuckers have the crust to show up on a POA's blog and get surprised that the debate strikes a nerve?): Holocaust deniers. The very act of entering into debate and attacking Dawson's points one by one gives those points credibility they don't deserve.

One thing I didn't love from Kit Weintraub's letter was this general sense that people with Asperger's aren't "real" autistics: I don't want some sort of false divide being set up. OTOH, I can understand, if you have a kid who's nonverbal or otherwise not functioning well in the world, it's going to seem that much more outrageous that someone who can testify in court is claiming to speak for all autistic people.

Oh, and for anyone who wanders by and wonders if there is evidence on ABA? Check out this website, which also cites court cases and stuff (another incredibly dedicated parent--there are people out there working heroically to help their children and others): should keep you busy for awhile. Educate yourself.

Woohoo! She did two pages of math with no complaining, and she did them easily! Go Primera! Meanwhile the stupid math homework she got from the district was something like, "There were two cars with four wheels. The number sentence is 2 x 4 = 8. Write another number sentence like it, and draw pictures." Perfect. She came up with five dolls, two legs apiece, how many legs. Which was fine, so I said, "Great, now figure it out in your head." Which she didn't want to do--she wanted to draw the fecking picture first. At which point I turned into Mental Math Nazi and had her figure it out in her head, which she was able to do.

But when I bring up the problems with language load for special needs kids, I get, "But there's an emphasis on visuals and manipulatives." Right, and if they're badly used, they actually make things worse for kids by making them over-rely on the visuals. But that's what I got Singapore Math for: she's actually learning how to compute very nicely.

She is upstairs waiting for the bus. She is as pretty as a picture. She let me brush out her hair, and she has on these rainbow tie-dyed sweatpants and a black top, and she looks lanky and coltish.

New Year

Whatever. Finished two books. Course, one was Tatum O'Neal's autobiography, but still. And I have an entire book full of practice SAT's to take: yay! I'm so warped that I was actually thrilled to see the books in the store. Need. Hobby. BTW: bro, published author, I need help again with some of the function problems.

Got Primera to do math this AM in return for letting her pogo in the back yard before the bus came (on a pogo stick, not dancing to punk music). Good trade by me. I let her pogo on the driveway for awhile, but we have certifiably crazy neighbors, and I was afraid the noise might rattle the metal plate in someone's head or something.