I won't do this talk justice (I have bronchitis and otherwise am not in a chatty mood), but I saw Rick Lavoie give two terrific talks last week. It was interesting watching him perform in the two venues, actually: he used some similar jokes and anecdotes as openers but covered very different material based on the audiences. The one thing I've always loved about his work is his focus on how the child is perceiving things--yet another one of those parenting reminders that I really need, to stop and imagine what my child is seeing or feeling. He talked about the stages parents go through to reach acceptance, and he pointed out that acceptance isn't a final destination, that the various phases of anger and envy and fear can recur.

As I've said many times, I think part of my coping strategy has been to get angry or to problem solve and intellectualize. The grief, I have no defense against the grief so I don't let myself feel it very often.

So today: went to part of a conference given by Pete and Pam Wright. As I told Pete Wright when I had him sign my book, I haven't been this excited to see someone perform since the last time I got Springsteen tickets. She had to play Burns to his Allen, Martin to his Lewis, Mom to Dennis the Menace, which the feminist in me kind of objected to. Some good stuff, though, and as often happens at special education conferences, it's not that I learn anything new so much as that it's a tuneup for me: a reminder to do all the things I know I should be doing. Plus I'm so warped I could sit there all day hearing due process war stories and about the time someone said that a holistic approach meant that the kids learn by osmosis.

Holland on My Mind

Don't know if I've used that title before, but anyway.

I went to see Jason Kingsley and Mitch Levitz the other night at our Y. There was a decent-sized crowd there, including a frum contingent I wouldn't necessarily know b/c their kids are in private school. There were some administrators and teachers I knew, which I thought was nice: seemed to indicate that their jobs weren't just...jobs.

There was a moderator who initially annoyed me (as did the person who introduced them), b/c they were both coming from a perspective of "Gee, I didn't know anything about this stuff, so I thought it would be interesting to do a series." Which immediately irritated me b/c some of us are living this, not just casually interested, except, as I started to tell myself when my initial bitchy reaction (default mode) subsided, these people didn't HAVE to be interested, and they chose to and then followed through.

Anyway: both Mitchell and Jason read from the update to their book Count Us In, and the moderator asked them some fairly scripted questions. One of the bigger laughs of the night was when the moderator asked Jason re his marriage plans, and he said, "If there's a lucky single lady out there, I'm available." He also pointed out one of his roommates as the expert on setting the romantic mood. He and Mitch were generally charming.

There were some questions from the audience, some of which were dumb: one physical therapist asked if they had advice about PT they'd gotten as toddlers. Mitch said something polite about the importance of early intervention, and Jason said something along the lines of, "I really can't answer that." Because it was when he was BABY, you dope.

Jason's mother is Emily Perl Kingsley, author of "Welcome to Holland." I don't think I've ranted in this space about "Welcome to Holland," but suffice it to say I've spent a lot of time being ambivalent about it, b/c it always comes up on email lists I'm on, or people mail it to me, or it appears in various publications. I'd just had a lengthy exchange w/someone on our school district's board re WTH, in fact, and I'd told her about all the parody versions: "Welcome to Beirut"; "Holland Schmolland," etc. With that background, then, I couldn't resist asking Ms. Kingsley about the response to it.

She didn't seem that aware of the parodies: she hadn't heard of the two I mentioned. I told her it often started thoughtful discussions on email lists b/c people had different responses. She said some interesting things, one of which was that she didn't like it when people took it as saying that it's all positive. She said she's spent plenty of nights crying and worrying, that Jason has experienced very significant depression, and she's "not lying on a beach with a pina colada," as I think she put it. She talked a little bit about the concerns she has with trusts and estates at a time when other friends of hers are attending their children's weddings or welcoming grandchildren, and she worries re who's going to send him a birthday card after she's gone (I told her I would, which was pat of me). She also said that yes, it's a lifelong grieving process.

She also told me that she'd seen one essay that said something like, "If I meet that woman, she's going to end up with sawdust in her mouth from my wooden shoe," and added, somewhat indignantly, that this woman's child had autism and she wasn't talking about autism. Which I thought was interesting, b/c the essay is general: no particular disability is mentioned in it, so the type of disability this woman's child had shouldn't matter. On the other hand, I always thought the subtext to WTH was that Jason does have Down Syndrome, that fewer children are being born with it b/c families usually elect to terminate if they learn prenatally that the baby has DS, and that Kingsley was insisting on the value of the life he was leading, that it wasn't lesser--that it was, as Michael Berube puts it in his own book on his son w/Down Syndrome, life as we know it.

Saddening article in Vanity Fair re Arthur Miller institutionalizing his son Daniel, born with Down Syndrome, found via Kristina Chew's Autism Vox. You could think a lot of things about this: that it was fairly common advice to institutionalize children w/Down Syndrome in the 1960's; that we have different perceptions of what children can do and what early intervention can accomplish. But it is nevertheless horrifying, esp. when I read that Daniel's mother had wanted to keep him at home but Miller had refused. And Miller was one of my heroes, what with testifying before HUAC, etc. I'm glad his son appears to have thrived, surely under very adverse circumstances.

Which dovetails nicely with the post I've been meaning to write about going to a panel discussion given by Mitch Levitz and Jason Kingsley, but it'll wait till another day and a more reasonable hour.....

Governor Spitzer signed the "Burden of Proof" bill. Yay! Though I rather expected he would. A spec ed attorney I know was saying that she does think there's been a change in climate since Schaffer v. Weast, that school districts had gotten bolder in what they'd been attempting to do or not do.

It's always a balance: I can't help seeing the administrators I know as fairly nice human beings, at the same time I think they're making, comment dit-on, unhelpful decisions, decisions not in the best interests of children or families, and I don't want to be coopted or blinkered by my personal liking for someone.

Legislation

There's a bill before Governor Spitzer--5396-A--which calls for placing the burden of proof in an impartial hearing on the school districts in NYS (where it had historically resided until the Supreme Court decision in Schaffer v. Weast), not the parents. Here's a link to contact him directly about it.

So Paula Zahn is having a show tonight re disabled children who were sent away to institutions as young children. I know that there isn't anything I'll learn from watching it, but I can feel myself getting sucked in.

Coincidentally, I'm reading Count Us In (Mitchell Levitz and Jason Kingsley). Some nice well-meaning person sent me a copy of "Welcome to Holland," which is by Jason Kingsley's mother (whom I correctly infered to be a member of the tribe), and then made the mistake of asking whether I liked it or not, which meant she got treated to the Extended Play version of my take on it. Which, of course, finds me riding the fence.

I'm about done w/the Dana Buchman book. Honestly, I'd have considered returning it about thirty pages in, but she donates the proceeds to charity, and God bless, it's well-intentioned. Next up: the new biography of Lyndon Johnson. Because I don't have the machisma to read the Robert Caro book, but our family loves us some Great Society bios.

So I'm reading that book by Dana Buchman, and there are parts I respond to, though my overall impression is that as a writer, she makes a great clothes designer, and there are things that are very specific to her story (the type A personality, the lifestyle). Also, I think I resisted the amount of space she spent on herself and her responses, versus any coherent sense of Charlotte's progress--the narrative had a very choppy quality to it, probably b/c she was trying to group things thematically to bring some organization to the whole experience. And she's been really, really therapized and it has some of that therapy-speak quality to it, though it's painfully sincere.

The business about learning not to fix her daughter resonated with me, though, as did the notion that she needed to embrace the disability as part of her daughter, which also felt familiar. And the cluelessness re how to pick a program: noticing the size of the rooms and the windows is about on the same level of decision-making I was operating at when we picked Prima's self-contained preschool. I still can't believe how uninformed I was.

I have such mad blogging skillz.

Went to the bookstore today and bought the Dana Buchman book re her daughter's disabilities: title is A Special Education. I've decided there are two basic types of disability-parent books: the Lorenzo's Oil type and the scream-of-pain type, wherein the motive is to show just how very, very bad it is, b/c the pain is sort of offstage in the theater of public consciousness. I may be making this up, though.

Uncommon Women and Others

Think I mentioned I went to a support group training type thing the other day. Anyway, I was talking to someone I know a little bit, and she was describing what she's done for her son: basically set up a peer mentoring program for him herself b/c the school district wasn't doing it. He was getting picked on in school (he's middle school age), and after stewing over it and asking for help, etc., she finally just went and called the parents of the kids in the class and talked them into asking their kids to help him. She said they've been really supportive, and she's spoken to them about his quirks and why he does what he does and how they can help him. And this was no big deal to her: this was what he needed, so she did it.

So Many Faces In and Out of My Life

Went to a new tutoring appointment today and when I walked in the mother said, "I know you." She didn't look that familiar to me, but I've gotten slightly used to that from my days as a PTA muckety muck (I'm big in this town, I tell you). But then she knew exactly where she knew me from, and it turns out she was the speech therapist from when Prima was in Early Intervention, a good seven years ago. I'd liked her at the time. What I'd really liked was that after evaluating Prima for a little bit, she said, "She is very, very, very bright"--I can still hear exactly how she said this, and how relieved I was--thus beginning Prima's long career of impressing speech therapists and doctors but not school professionals (the SEIT who worked with her had her testing in the low normal range, e.g., and told me all the very many things Prima wasn't doing that she should be doing, like alternating feet and jumping off curbs and saying how old she was).

And in meeting the son, I suddenly got a whole biography on the mother, because the son had major dysfluency, and I could imagine the parent first dealing with the child's dysfluency and studying everything she could possibly find out about dysfluency and then eventually turning it into a career. One of the many, many times I'm reminded of how our children take us places we'd never expected to go.

I'd had no idea. Really, before I'd had children, I'd had no idea.

Seven years. It still feels like yesterday. And I was able to pull out pictures--look! That's the little baby you remember, who now weighs 80 pounds! And Prima's getting a little resource room but doing so well, the child you last saw when she was in diapers.

Well, the good professor was kind enough to reply--it would seem the 80% statistic is a bit of a myth. Interesting how these things get repeated so often they end up becoming truths--the factoid just got cited in Town and Country magazine:

I would be quite skeptical of such a statistic. As you know, some years ago I worked on the topic and found a modest increase in the risk of divorce with a disabled child. A rate of 80%, however, is very much higher than the average risk of divorce. I have not followed the literature, but I just went onto Google Scholar (scholar.google.coM) and find nothing directly relevant except for my paper. That’s not very surprising to me because actually, even measuring divorce rates is not a straightforward matter (it requires observing couples multiple times over a relatively long period), and measuring the impact of any factor on divorce rates is not easy. A factor such as “childhood disability” is also complex and not easily measured. My own efforts were very crude.



My overall comments are these:

Clearly, having a disabled child is a very stressful experience -- there is a considerable literature on the very high levels of stress experienced by parents. Stress, as well as the time demands of raising a disabled child, can certainly impair the quality of the marital relationship. How much the quality of the relationship is impaired varies from couple to couple, as do their capacities (emotional, practical, financial) to engage in relationship “repair work” to help sustain the relationship. Sometimes the courage and persistence needed to deal with disability can foster new respect between partners.



Most couples need support and sometimes actual help in protecting or restoring the quality of their marriages, and parents of disabled kids may need more than most (and may get less than most). So marriage relationships may certainly be of “lower quality” on average among parents of disabled kids—though I’m on thin ice (lacking empirical backing) making even that suggestion.



Divorce is a specific option couples use to “deal with “ (or not deal with) a poor-quality relationship, but it is certainly not the only possible option. Having a disabled child may, in fact, make the option less available, for reasons of money, obligation, loyalty or concern for the child. Equally, it may make the option more appealing. But I don’t know of any statistics on how these competing pressures actually play out.

Disability --> Divorce?

Factoid I've been trying to verify: the percentage of parents of autistic children who divorce. I've seen a figure of 80% given any number of times (go ahead and Google it--you'll see it come up all over the place, including various news sources who just quote it and don't bother verifying it either). The closest I've come to any kind of verification is a citation for an article by Jane Mauldon, an associate professor at Berkeley, late of the RAND Institute, which I've been unable to find online--she had apparently written something in 1992 on the question of disabled children and divorce rates (note: not specifically autistic children). It seems it does lead to a higher divorce rate, though I couldn't find a specific figure. I also found something to the effect that divorce is more likely to happen after the child reaches school age--there was speculation that it was b/c the child had to be educated by the school district, freeing the mother up somewhat more and making her less dependent on the father.

I had one of those power surges I get very late at night and emailed Jane Mauldon herself to ask if she could point me to some specific sources or numbers. I will be very, very surprised if I hear back. I'm not holding my breath for a reply, of course.

Numbers Games

I have two contradictory thoughts about IQ tests: one is that they are racist and have a long history of being misused and misinterpreted and that they are essentially bullshit, especially for kids with disabilities. Second thought: they actually ARE measuring something, something that I'm good at, which is sort of like intelligence except with no application to the real world. Primera has in fact always performed badly on IQ tests. This bothers me. "She seems smart enough to me," I've said, only to be patted on the head and told, "It's a snapshot at this particular time." Yes, but it's blurry, and it's the wrong camera.

I can rationalize it six days till Sunday, but it has still always bothered me. It bothered me the time I threw the test across the room b/c her score was in the low average cognitive ability range. It bothered me the first time she was tested, when she didn't get an IQ score but did get a deeply depressing assessment showing her behind in just about every area you can measure. I called and left a blistering message on the supervisors phone after reading the report, going over every single subtest and saying why my kid got questions wrong even though she KNEW the material, as I could demonstrate if they let me show them. I ranted on and on and sounded like every other parent of a newly diagnosed child entering the system: in pain and denial, blahblah, get over it and start helping your kid.

I will always, always, always be grateful to Dr. McCarton, who went over the WPPSI results with us and said that Primera had some problems with abstraction, and when I pointed out her high score on Similarities and asked how she'd done well on that, Dr. McCarton started laughing and said, "Because she's SMART." And after that I was instantly in love with Dr. McC., even if I had the suspicion she was saying that because I needed to hear it.

Her speech therapists always thought she was a genius; doctors always thought she was smart, every single one of them; her examiners, not so much.

But anyway. The point, and I do have one, I think, is that she gets another IQ test score back and it is a good 20 points higher than she has EVER tested, thanks I'm sure in part to the wonders of ADHD medication, but also thanks to what? Her developing enough language competence to follow the directions this time and show what she can actually do? Do these tests really measure anything effectively for a child with language delays? My impulse is no, but the research I've looked at indicates that IQ testing does have reliability for autistic children. And it's used, still, for decision-making: IQ test + Vineland Scales = money, or not, from the county/state/government. It's what Lovaas used to help demonstrate "recovery."

So why am I happy anyway? Even though I know it's all bullshit....

Just as a distraction, I'll write about Marti Leimbach's book Daniel Isn't Talking. I was bemused to find out it was sold out of our Borders almost immediately. It's ranked 31 on the bestseller list--maybe that ended up surprising the bookstores, but given the autism numbers, there's definitely an audience. Anyway, I picked up a copy yesterday and finished it in a couple of hours. Quick read.

She's very good on some things: the way the mother compares her child to other typical children, the envy she feels, the alienation from (and hostility to) the "normal" mothers. I wasn't so sold on the character as a character, especially at the beginning: she didn't strike me as especially funny or bright, though she was billed as. I liked some of the things she did: the crazy narcissistic brother with the moronic girlfriend, because other people's absurdities do seem just that much more absurd and in some ways tolerable, b/c you know how absurd life is if your child is disabled. I wasn't remotely interested in her cad husband and didn't believe for one second she'd ever been in love with him, and alas that took up a goodly part of the book (yes, I know this is based on her own doomed marriage and autistic child--she even kept her initials and the number of syllables in her last name--perhaps she's sufficiently angry that she can't creditably portray her ex as having any redeeming qualities? And it's a funny enough revenge fantasy, in its way).

Intelligence and Disability

I've been mulling this one over. I know some very smart women with disabled kids, and it strikes me that people don't talk about one of the hardest things for parents w/disabled kids, namely when they realize their kids aren't going to be as smart as they are. I'm someone who once threw an IQ test across the room. To this day I won't even mention the number to friends because it was too painful (and I don't want them to think of her that way, but mostly because it's painful for me to remember it). "But she's smart," I say defensively to the people who evaluate her. "Yes, of course she is," they tell me, and I think they're lying and placating me. I remember reading on one of my lists: a woman realizing one day, "Oh my God, my poor little boy is so stupid." And I remember another evaluation at a very fine university, the name of which happens to rhyme with Male. The IQ was thoroughly lackluster: a different lackluster from the previous time, but still lackluster. And I scrawled "That SUCKS" in pencil across the report, and I don't remember much else that the evaluators said. Even though it was my audience with the Autism Pope.

I'm not sure why it's so painful, or why I think a lot of parents won't talk about it (maybe admit that we are so invested in our children's intelligence? That more important even than being happy or having a good job is the thought that our child won't have a clue?). I just know that it's the single thing I'm most defensive about. My child scores very, very well on most academic measures, and it's a highlight for me when we get the WIAT scores. When she doesn't score well, or when a number seems out of whack, I'm all over it: could that possibly be the right percentile? The SD number looks wrong. Could you check the scoring? I wonder if educators know this: I'm sure they do. I'm sure many of them think that Mothers from Hell are motivated at least in part by anger and rage about their child's disability. And I think that's patronizing and oversimplifying. But I do think there's a lot of pain and anger that sometimes we can't face because it seems an implicit criticism of our children.

My, I'm chatty today. Found this interesting article re sound processing in babies and its links to language issues later on:

At Rutgers, neuroscience professor Dr. Paula Tallal and Dr. April Benasich use simple and high-tech methods to measure how quickly a baby processes a series of beeps of differing pitches.


By following the babies for years, Tallal said, they have found that "the single best predictor of language development across the population is individual differences in how fast the brain can organize simple incoming auditory information" at extremely young ages. That speed was an even better predictor of later trouble than whether a baby came from a family with known language problems.


The Rutgers group works with 6-month-olds, but German researchers have found a similar effect in 2-month-olds, and a Finnish group even found differences in the way 2-week-olds processed sounds, Tallal said.


In an upcoming issue of the journal Neuropsychologia, Benasich and colleagues report that children who processed sounds slowly at 6 months also tended to have less developed language skills at age 2. Such testing "during infancy, may, in the not too distant future be a useful tool for early screening," she wrote.


The next question, say Benasich and Tallal, is whether a baby identified as a slow processor can be helped to become a faster one.


Benasich's lab is now setting up pilot studies for slower-processing infants, she said, to try "to nudge the baby very gently onto an optimal processing path" - by changing the child's focus to sounds it hears around it, for example.

More information on that optimal processing path, please. And of course, I'm remembering Prima, less than a month old, not responding to the alarm system when it accidentally went off in the house. She flunked an OAE at birth, and I took her for a hearing test when she was a year old. I was told her hearing was grossly normal at that point. I'm sure it was. And I still see some processing delays. If I ask her a question and she takes awhile to answer it, I'm almost guaranteed a right answer.

Primera gets on the bus this morning after reviewing the flash cards she made herself to review for her social studies test. She heads to the back; through the windows I can see her with a group of three or four girls about her age, turning to face them and smiling. She looks vaguely futuristic in a quilted ice-blue A-line coat: princess outerwear for the year 3000.

Had a discussion re disclosure with the parent trainer (that sounds athletic; it's not). Primera is full of questions re her classification on various forms, and being an observant and curious little cuss, she doesn't miss much and is prone lately to listening at doors. I have told her the truth, though in somewhat clinical and legalistic ways, hoping that DSM-IV language can function as a reflector shield for her curiosity. She bores in, though. I have drawn her rainbows to show her what a spectrum is. I have told her things that are true but equivocal. I have to figure out what I believe first, I suppose. Disability/difference/do any of the labels fit anyway. Is this really her medical history or her educational history?

Halloween come and gone, Primera dressed as The Scream.

Got Michelle Dunn's book at the conference I went to, which was I suppose overkill since we're fortunate enough to have the program (and Michelle Dunn) in district. I lent it out, but it looks good, if a little thin in the front re the instructional theory. More neuroscience!!

[Random thought] So I'm getting teacher certification, and it occurs to me this morning as I'm half-waking that we NEVER have anything devoted to special education or special needs instruction. In fact, in New York State, you can get certified without taking a course, though you need courses in multicultural education. Which I think is valuable also, but in practice you may not end up in a very multicultural school, esp. if you teach in the 'burbs, but you most assuredly will be teaching special needs kids during your teaching career.

All in all, I've been thinking about what a shit job we do marketing this issue and its concerns where it matters, namely in the training of teachers (I've also been thinking about this after watching a very slickly produced video last night for a kidney disease foundation. The event I went to probably raised half a million dollars, and this was at a suburban event attended by extremely small-time politicians and only the moderately well-heeled. Why isn't some autism foundation doing more in this area? The Walk Far is nice, but what did we raise this year? Maybe 4-5 million when all is said and done? That's such small potatoes). You can walk into a classroom not knowing what an IEP is, not knowing how to conduct yourself at a CSE. I have yet to hear ANYTHING mentioned about parents and working with the family as a partnership. That just never comes up.