The Stakes

We "won" Battle: Least Restrictive Setting. We had our IEP meeting and Sweet M gets to continue at her current school and go on to middle school, entering the sixth grade in the fall.

She could not be happier about this. She worked so hard in the past year — closing gaps in reading and in math specifically because she loves her school and wants to continue there. Two weeks ago her class toured the upper school and she came home so excited: "In the middle school they have two science labs, and you history, and math, and English! And guess-what-guess-what-guess-what — they have three dances!!!"

So, hooray, right? Hip-hip-hooray, right? Score another one for the Autism's Edges team, yes?

Except that we lost her one-on-one paraprofessional who was really an ABA learning specialist who helped her close three years of reading gaps and completely restored her sense of belonging in the community of kids at school. Sweet M grew and grew and grew over the past two years with all this support and social scaffolding.

They — the school and Committee on Special Education team — wouldn't even agree to a short-term transitional para for the first three months of the year. The argument is logical, though not altogether legal: "If she needs a para then she doesn't belong in a private 12:1:1, she belongs in a 6:1:1." So we won. Sort of. And we're quietly wondering how next year will be. Hoping it's fine. Not altogether sure.

The good news is that her para, whose judgment we trust, says she is 100% confident that Sweet M will be fine in the middle school without a one-on-one, transitional or otherwise.

I was looking at Sweet M's fire escape garden last week. We got home one afternoon and the tomatoes had gotten so big that the branches were falling down, the big green toms hanging over the edge of the pot, poised to ripen and fall seven stories and splatter in our neighbor's backyard unless we intervened.

We added a stake and tied the sprawling branches.

In gardening when the fruits of one's efforts grow and develop, you add supports to ensure your harvest. In special education, you take them away and see how things fall out.

Hopefully my analogy is flawed, and Sweet M is more like a tree whose roots have deepened and made her feel increasingly able to stand on her own.

Iron Mom: Battle "Least Restrictive Setting"

Now and again we watch The Food Network's Iron Chef America, a game show that features a celebrity master chef like Mario Batali or Bobby Flay battling a challenger in "Kitchen Stadium." Their task: to make the best five-course meal in just under an hour using a featured "secret ingredient" such as trout, or flank steak, or parmigiano reggiano. The secret ingredient must be featured in each course. A panel of food experts judges "Battle Trout" or "Battle Flank Steak" or Battle Parmigiano" based on criteria such as flavor, originality, and presentation. The Iron Chef secret ingredient can result in some strange dessert outcomes -- beef-infused ice cream, beer meringue, and sea urchin custard are just a few.

Sometimes I feel as though autism parenting is a lot like the timed kitchen stadium battle. Your kid will only be this age -- whatever the age is -- once. So the time limits are clear and the pressure is on. You know the clock is ticking. The master chefs you're up against can be renowned experts, school personnel, or board of education officials. The stadium is the school district, the Department of Education, or for some fierce contenders, federal court.

Right now I'm appearing in Iron Mom: Battle "Least Restrictive Setting." One or two people at Sweet M's school have long believed that she should be in a more restrictive setting -- a 6:1:1.

Sweet M attends a state-approved (and therefore partially publicly-funded) private school for children with learning disabilities. Some school administrators believe that she (and/or the school) would be better served if she were elsewhere: at a school where all or almost all the children are on the spectrum.

Those of you who've been following this blog know that this has been an ongoing issue: every other year for the past six years we have looked -- in earnest and with open minds -- at other settings and determined that they would not be appropriate.

We find ourselves in the odd position of making a mainstreaming argument even though she is in an LD school. Because the school has a much greater variety of children than a school for kids on the spectrum would have, it more closely approximates a mainstream setting than other places do. Maybe it's not mainstream, but it's a much larger tributary that the stream they'd like to send her to.

The rules of this special education game -- the secret ingredient of "least restrictive setting" -- have left us with an outcome for Sweet M that seems a lot like flank-steak infused ice cream or urchin custard. This is not exactly what you'd choose to make for dessert if you weren't working within a narrowly defined structure with very specific rules.

But, of course, the differences are clear: in Iron Mom America the battle isn't just an hour, but year in and year out, and the real stakes are much higher than just a tasty meal and haute cuisine bragging rights.

"Whoa - oh, what I want to know, is are you kind?"

On Saturday we went to a potluck barbecue at the Woodstock home of a friend who is an advocate, educator and activist and the mother of a teenager on the spectrum. All sorts of families with kids on the spectrum were there and I was filled with a feeling — such a very rare and delicious feeling — peace and acceptance.

The last time I had such a feeling was at the autism and advocacy conference organized by Jim Fisher at Fordham University. But this time was even better because both Sweet M and her father were along for the fun. Our entire family was filled with a sense of ease and peace.

Everyone at the potluck had been through the sorts of things we've been through with psychiatric and educational professionals, everyone had struggled to find appropriate educational settings, and everyone adored and supported their quirky, autie kids.

When Sweet M had enough interaction — playing with foam-covered swords and running across a dandelion-feathered lawn — she retired to our friend's bedroom and watched some television. She was joined by a boy about her age and when I peeked in on them, Sweet M and he were talking about their favorite programs.

Later on that evening Sweet M told me, "You know that boy I was talking to?"

"Yes," I said.

"He told me he likes Arthur . . . but he doesn't tell his friends so they won't make fun of him."

Sweet M likes Arthur, too.

She's an Arthur-and-Dora-loving girl in a Hannah Montana world.

And she'd talked with someone who has the same "problem."

Her tastes in television, books, and toys mark her as developmentally-different. The delighted way that she says, "Isn't he a cutie-wootie?" marks her as developmentally different. Even the high pitch of her voice, according to her one-on-one, marks her as developmentally different.

But on this one Saturday afternoon, none of that mattered as we were not encumbered by neurotypical benchmarks. On Saturday, she could be herself and be great.

At another point in the afternoon, our friend and a young woman on the spectrum were heading off to take a ride in our friend's convertible. The young woman, for whom it seemed that speaking was not the easiest of things, turned to me and asked if Sweet M would want to go with them. Someone for whom talking is difficult took the time to talk — in order to reach out to Sweet M.

I asked Sweet M if she'd want to go in a car with no roof and feel the wind in her hair, and she jumped up from the television in a burst of enthusiasm — sure I'd want to do that!

Later when I asked M about the ride she said: "It was so great . . . it felt like something . . . it felt like something like freedom."

Another guest at the party — an older teenager — had brought along a turntable, speakers, and a crate of old vinyl LPs. One of the LPs was an old Grateful Dead album that I hadn't heard since sometime in 1977, back in a time and place when listening to the Grateful Dead was cool. When "Uncle John's Band" filled the yard with the Dead's acoustic blue grass and rock blend, I was filled with happy sadness:

Well the first days are the hardest days,
Don't you worry any more, 'Cause when life looks like easy
Street, there is danger at your door.
Think this through with me, let me know your mind.
Whoa - oh, what I want to know, is are you kind?

What I've learned at autism's edges: kind is better than cool. In fact, kind is the coolest cool.

Listen for yourself . . .



Or if this embedded file is slow, go straight to the source.

On Cultivation

About three months ago Sweet M was watching television with a headset on and she turned to me and said, "Hey M___, have you ever heard of a p-alarm?"

I said, "A p-alarm . . . not sure . . . what do you mean?"

"You know," she said, "An alarm that helps kids who have my embarrassing problem?"

"Oh, a pee-alarm," I said. "Yes, I've heard of a pee-alarm. How did you hear about a pee-alarm?"

"I saw it on TV."

"Cool."

"Can we get a pee-alarm?"

"Sure honey, if you want one, we'll get one."

"Whoo-hoo," she hollered, "no more diapies!!!"

Diapies, of course, was our baby talk for the night time pull-ups that she went back to after we spent a year in an abortive attempt at night time continence that she was then incapable of. That was a miserable year. With flawed advice from a well-intentioned friend and our visions of upcoming sleep-overs and cute nightgowns and all of that, we pushed and pulled and suffered . . . loads of laundry, interrupted sleep, and her own disappointment despite our efforts to be supportive. I wrote about this painful interlude several years ago.

Once we corrected our own efforts -- once we stopped trying to push Sweet M to be in a place that she wasn't developmentally ready to be -- we swore that we would never again push her around her enuresis. Rather, we vowed to remain vigilent for signs that she was ready to try again. Her doctor had even told me about the bedwetting alarm system about two years ago, but I wanted a sign from Sweet M. Her "whoo-hoo, no more diapies" was loud and clear.

We got the night-time wetness alarm from the bedwetting store online, and she's now almost always dry, except on nights when she sleeps too deeply from allergy medication and forgets to get up.

Our job was less one of discipline than one of cultivation. The metaphor of garden and cultivation is fairly well inscribed in our language and lives . . . kindergarten, the children's garden, where virtue is cultivated and wickedness weeded out.

This is Sweet M's fire escape garden. This year she selected all the plants herself, and made sure they made it into pots large enough for their development, except perhaps in the case of the "hen and chick" succulent ground cover that is searching for some place to put down roots. She waters the plants daily, to the occasional dismay of the ground floor neighbors. She makes her mulches of old leaves. She watches over her work. She harvests the chives for stir-fries and omelets.

She understands that she can't push the plants to grow faster, or force them into bloom. She just waters them, and gives them mulch and fertilizer, and waits for things to unfold.

I hope I can emulate her wisdom as I think about where she will go to school next year.

Making It Up as We Go Along

Some of you who've been reading this blog for a while know that I can be given to grumbling, griping, kvetching -- as we say in the fair city we've made home.

So you would not have been surprised to have heard me muttering about the forty term papers that I was marking for one of the classes I teach at a nearby private university. On the whole they were a disappointing stack of documents. The assignment I'd made was probably too difficult -- too open ended and requiring that the students use their skills of analysis (where present) with their skills of imagination.

Because there was an uneasy fit between the assignment and their skill level, marking them was onerous. It took me nearly an hour per paper, and I could have easily spent longer. As I was slogging through the papers I'd grumble. They can't write, I'd say. Did they ever take a comp class? I'd mutter. Do they understand that papers need to have a thesis?

In the midst of my mutterings, Sweet M turned to me with a tone that filled with both innocence and earnestness and said, "You know they're doing the best they can to graduate."

Like she has been. All year. Closing a nearly two-year gap in reading. Trying to catch up in math because the language of computation eludes her even when the arithmetic itself does not. Studying ancient Aztec and Mayan cultures because they are part of the New York State social studies curriculum when she is still struggling to completely understand the linear qualities of time. (How do you explain the idea of 100 B.C. and 100 A.D. to someone whose sense of temporality has only recently emerged?)

She's been working so hard that she is often worn out. She's not in the zone (of proximal development). Instead she's often struggling to keep her head above the rising conceptual water. Her extraordinary one-on-one support person does everything she can to close the developmental and conceptual gaps -- to throw her conceptual inner tubes and flotation devices and to otherwise shore up her understandings. Her father and I do hours of remedial homework with her. And still Sweet M's brain keeps developing along its own mysterious timetable, not exactly in synchronized swimming with developmental norms.

And so I wondered yesterday: Are we working too hard? Are our goals and expectations too high? Are we giving our dear girl a life without balance -- a life where work consumes all else?

In the midst of this year of hard work, Sweet M started singing in the shower at night. She makes up very short little chants and sings them with a wonderful off-key atonality. Most of the year they've been about time: "Tomorrow is Friday, tomorrow is FRI-day. Tomorrow is Friday, hey hey hey hey hey. There's just one day of school left . . . there's just one day of school left . . . There's just one day of school left, hey hey hey hey hey." She makes up different ones for each day of the week -- I suppose that she is anchoring the days of the week and the shape of the calendar into her lived experience.

Last night she made up a new tune. She was belting out a single line "Be yourself and you'll be great, be yourself and you'll be great. Be yourself and you'll be great, hey hey hey hey hey."

When she was drying her hair I asked her where she'd heard that song. She said, "Oh that's one of my own makeups."

Makeups -- so many things in so many different contexts. To do yourself up and to do yourself over, as in making yourself presentable to the world. To do something you missed, as in makeup exams. To make up, as in to restore harmony to a relationship. And to make up, as in invent something new, never before imagined.

I'm so much more interested in harmony and invention than in putting on a good face and catching up.

How can we help her to be herself so she'll be (and keep being) great?

Do we keep up the pace -- pushing her (and ourselves) hard to meet external timelines for her education -- or do we drop off the neurotypical educational course? Do we keep her at her school or do we look for an easier place for her to be?

We keep making things up as we go along, but I find myself wondering if there couldn't be a better way. I find myself wondering how long we can make this improvisation work . . .

Another Version of Aging Out

Last month I went to California to be with my father when he died and to be with my family at his funeral. The funeral was exactly a month ago today.













On the phone from California to New York, I asked Sweet M if she wanted to come out for the funeral and she said, "Uhp-hummm (feigned throat clearing), the school, uhp-hummmmm, the homework. Remember 'the working hard' and 'the study hard'. I can't go, I have school."

It's sort of hard to convey the inflection, but imagine a snarkey teenager (though she's not that old yet) mimicking back everything you've ever said about working hard and studying hard. She completely has my number with that "working hard" bit.

So she and Fathersvox stayed in New York and I navigated the end of life terrain — the ultimate aging out — without them close at hand. Perhaps this is the aging out that has weighed most heavily on my mind.

I have written very little about my father's illness. In part that is because I have been some 3,000 miles away, dropping in as I can to assess the state of his life and my mother's, but largely unable to be of much help.

Alzheimer's seems to be a 1,000 little deaths followed by a sigh of relief. There are so many losses all along the way that the work of mourning is nearly done by the time death arrives.

There were his years of pretending to understand us, of covering for his memory loss, followed by the getting lost at the airport in 2001 and then the many episodes of losing his car and finally "losing" his car keys when my mother finally took them away, then there was the forgetting of his AOL password and then end of his emails, and then the end of reading novels by the dozens as he once had, and the beginning of wandering and falling down, the brief and sometimes less brief hospitalizations, and then the not wishing to bathe or shave or change his clothes, always the terrible fear of losing his mind, and the inability to remember our names, words, places.

In the last year there was the confinement in an assisted living facility that was thought to be safe and fine but that harbored everything from extraordinary care to incomprehensible sadism. Then there was the effort to get him home, then the hospice care, the precipitous decline and the several days of labored and then quiet breathing, and then quiet and a slack-jawed moment that is so hard to comprehend that surely it has given "slack-jawed" its very meaning.

All of this is followed by a flurry of funerary activities to distract one for what has just unfolded, and to provide recognition of and closure on one man's life.

So I am not at all sad about my father's passing. I am relieved for him and for my mother, who labored to provide his care for all these years.

Sweet M took it somewhat differently.

When I got back she said, "So Grandpa's dead."

"Yes."

"So I guess that means he won't see me go to middle school."

"Yes, he won't see you go to middle school. Well, some people think he can see you from heaven, but I'm not sure about that -- I'm not sure how that would work."

For her it is still exclusively about the people who see her and love her and celebrate her. It is about her place in the world. Perhaps that is how it is for everyone, but she has not yet learned to dissemble regarding her M-centric world.

We looked at the photos that I took to show her what the funeral was like.

"Hey!!!! You got to ride in a limousine. I want to ride in a limousine! I want to go to the funeral."

"Well honey I invited you and you said you didn't want to come because you had school."

"I know, but I changed my mind and now I want to go."

"I can see that you do want to go. But we can't go back in time to do it over again."

"Because scientists haven't invented time machines yet?"

"Yes. And because so far as we know time only goes in one direction."

"Okay, but I really, really want to go to the next funeral."

"Okay."

"You promise?"

"Yes, I promise."

"Who's going to die next?" she asked with excitement.

She could have been asking "when will Santa come?" so lacking is she in even the slightest trace of socially appropriate fear, grief, or bereavement. Nothing but unbridled delight and anticipation.

• • •

That is what I love about autism's edges. We always have something to look forward to because it remains the upside-upset-down world where strength and weakness, good and bad, joy and sorrow, asset and liability, are impossible to distinguish.

Aging Out?

When I first wandered into the autism blogosphere one autumn day some three years ago, I was struggling mightily. Sweet M's school had told me that I should look for another school: that she was not learning to read and might not learn to read more than the most rudimentary of texts, that her meltdowns were too disruptive, and that we should be looking for another school because she needed more than they could provide.

Autism was the A-word -- not because of an aversion on our part (though admittedly in the earliest days of early intervention we found the possibility of such a diagnosis daunting) -- but avoided because of the ambiguity of her diagnoses. Beyond that, little M would continue to have more educational opportunities if she did not have an autism spectrum diagnosis. (Yes, sad but true, even now, even in the 21st century in the grandest city in the nation.) Our goal was to keep her school placement until and unless we found a more suitable setting for our sweet girl. So out came Autism's Edges, with autism right out front but with our names changed to protect the guilty, the innocent, and those who rapid-cycled between the poles of hero and villain.

Since then lots of things have changed, not just hero-villain reversals and narrative whiplash, but other everyday things that matter enormously. Perhaps the biggest change of all: Sweet M is in fifth grade and she is reading at a fifth grade level. The fact that she is reading is nothing short of a triumph -- her personal triumph of turning perseverative behavior into perseverance, but also a professional accomplishment for the teachers, therapists, and doctors who have worked with her, and a hard-won parental victory for us. Hooray. She no longer has the meltdowns that frightened her teachers, her peers, and her father and I. And she is no longer a little kid, but is instead poised on the edge of adolescence as her hormones race to carve a waist, fill out curves, and replace the sweetness of childhood with the richness of puberty.

Amidst the changes, much has stayed the same: Sweet M is still at the same private special education school for kids with language-based learning disabilities (but that claims that it does not typically serve children with autism). And the school would still like us to find her a new school, if there were a more appropriate placement. Sweet M continues to struggle with expressive and receptive language, although now her vocabulary is exploding as she can add words through the visual channel of reading (as one autism reading specialist suggested would happen). She still has troubles with peer relationships; her auditory processing gap of several seconds makes the back and forth chatter that is typical for girls her age all but impossible.

Of all these changes, the one that is most important for this blog is that Sweet M can now read. Last night as I was answering an email, she sat and read over my shoulder. Her privacy -- so precious to anyone, but especially to those poised on the edge of puberty -- has become an expanding constraint on my writing here and so I have written less, and less, and less even as more and more has been happening in our lives. In some ways we may be aging out of this blog, though not out of our lives with a girl at autism's edges.

Over the next couple of days or weeks or even months, I will be looking back over this blog, and thinking about where to go from here, not only for the blog, but for our family. Should this blog continue as it has been -- with the protracted stops and starts of late? Probably not. Perhaps it should it take it cues from Sweet M: she has blossomed and perhaps the blog should grow in some new direction? And finally should we at last capitulate and move Sweet M to a school for kids diagnosed with autism (because, her school says, it would be easier for her there), or should we insist on keeping her spot at her school because it is the least restrictive setting in which she can learn?

This spring we'll ponder the question of aging out.

The Hidden Costs of (Mis)managed Care

Being that it's January -- new year's resolutions and all that -- I had decided to do what our culture urges us to do at this time of year: make some health improving resolution. And I did. I got a physical from a new doctor since my dear doctor died. I started a walking program. Shifted some things in my usual eating. You know -- all the usual health and fitness resolutions.

But instead of focusing on my health as I had planned to do, I spent more than 17.5 hours in the first ten days of the new year on the phone fighting with our health insurance over getting one of Sweet M's prescriptions filled.

It wasn't a new medication -- she's taken this medication since early December 2008 when she was diagnosed with reflux. Her doctor chose it because it was *on* the insurance company's formulary -- it was an approved, preferred medication.

But come January 1, the insurance company came up with a new Rx plan with a new formulary and were denying payment -- the week before she has to take standardized tests that will significantly impact where she'll go to middle school. Since changing meds can change her functioning, changes are not a great idea, but they're an especially bad idea this week.

I'd just buy her the medication, but frankly, we're about as short on greenbacks as this weathered tree is.

So I was on it. Making sure they approved her medication -- no substitutions.

Ultimately I got them to capitulate, after the aforementioned 17.5 hours on the phone. Yes, I was counting. And that was 17.5 hours when I wasn't taking care of my health -- wasn't getting in those 10,000 steps folks think we should all fit into our day, wasn't planning healthy meals, wasn't cooking or meditating or doing strength training. And, of course, I wasn't doing the work that I am paid to do.

My health insurance provider professes to want to encourage members to take better care of themselves -- they call it 360° Health. The even trademarked that name. They're very committed to our health and well-being, or so their website with the smiling folks would suggest. The theory is that if I were to get in better shape, they'd likely have to spend less money on me overall -- over a lifetime. Or at least that is what their actuary tables say.

The way I figure it, when the health insurance company wastes our time and creates undue stress in our lives to save a buck here and fifty cents there, they're actually costing us all. Looking at things this way is called real-cost accounting, though most companies would never bother to look at such a complete picture because the costs don't fall to them directly -- they don't appear on quarterly P & L statements. Instead these are the costs that we bear invisibly: in lost work time, and in stress-related illnesses as our blood pressure rises, or our backs go out, or our knees buckle under the weight of all that we bear. Insurance companies can ignore what they cost us, how they wear us out and wear us down.

But we could fix that. We could start invoicing insurance companies for the hours that we waste on the phone with them disputing their arbitrary and capricious denial of claims and those absurdly low limits for putatively "reasonable and customer professional charges." We'd bill them for the time we spend punching in our ID numbers over and over again, listening to the treacly muzak while we're on hold, being transferred from one disempowered customer service rep to another. Bury them in invoices for all the hours they've cost all of us, for all the ways that they are destroying the health of our country and its citizens.

I would love to see this happen.

But activist reverie aside, how do you -- other autism parents -- find ways to take care of yourselves and your kids? How do you strike a balance? How do you stay resolute not only about your child's health and well-being, but about your own?



Photo: Courtesy by Oruwu: Used courtesy of a Creative Commons Attribution/Non-Commercial Use License.

I am tired of reading about autistic and developmentally different children being abused and tortured.

I am tired of reading about autistic and other neurologically atypical kids being abused and tortured. How do we get this to stop?

http://www.cnn.com/2008/US/12/17/seclusion.rooms/index.html?eref=rss_topstories

UPDATE -- January 13th, 2009

The National Disability Rights Network has released a report on the use of restraints and seclusion and has called upon the 111th Congress to ban these practices under federal law. Hats off to them. In light of the historic changes ahead in DC, let's hope we can say yes we can.

Steven Tamarin, M.D.—Memorial Service

Just to clarify, the memorial service for
Dr. Steven Tamarin, M.D. will be held on:

Saturday, December 6, 2-4 p.m.
New York Academy of Medicine
103rd Street and Fifth Avenue, 2nd floor (enter on 103rd St.)

There is a warm remembrance of Steve at the website of New York State Academy of Family Physicians, and in the comments section on yesterday's post.

Thanks to the readers who shared this information in their comments, and for the lovely remembrances of Steve.

An Autumn of Eulogies: Steven Tamarin, M.D.

Alas, in spite of all medical advances the mortality rate hovers at about 100%. If you don’t die of heart disease you die of something else . . .

— Steven B. Tamarin, M.D.

January 29, 2008 2:05 am Link

It seems as though I have entered into the autumn of eulogies. Another great one has passed away, and this time another one who has cared for me, for my family, and for hundreds in the city of New York.

Steven Tamarin was among the last of what now seems to be literally a dying breed, a family doctor. Sometimes wary of new medical panaceas, he'd posted the comment above on the New York Times Wellness blog earlier this year, characteristically funny and somehow eerily prescient.

Steve, or Dr. T as we sometimes called him, first treated me when I was in my twenties, just back from living in Japan for two years, nearly penniless and without a job or health insurance. I'd come to see him when friends who'd traveled to Central America on aid work recommended him -- I think they'd traveled there together. Despite his Fifth Avenue office he'd said Just pay me $10 when you can. Really, I'd asked. Sure he said. You don't have insurance, other people do, so pay me what you can when you can. That's how we do socialism in this country. It doesn't work well, but that's how we do it. Later he'd move his office to a somewhat more modest, some might say shabbier, space on the Upper West Side of Manhattan.

Steve was my doctor for more than two decades, my husband's doctor since we first met, Sweet M's doctor in the first weeks of her life. He was there at the hospital when Sweet M was born. He was the one who caught the "click" in her hip that presaged hip dysplasia and so saved her from future surgery. He was the one who sent us off to the "lactation consultants" when she lost 20% of her weight in the first week of life, uninterested as she was in nursing. He was the one I went to when there was the first intimations of Sweet M's developmental issues, and he sent us off to one of the finest developmental psychiatrists in the city -- someone who was an old and dear friend of his. He was the one I sought out in the heartbreaking summer of 2002, when our worlds were falling apart in the wake of 9/11, our businesses imploding and finances collapsing, and our nerves worn raw with the progression of Sweet M's escalating tantrums and preoccupations. That summer, frayed as I was, he was the doctor who told me that it would be better for me to go on vacation than to check myself into Bellevue. When I was seized with pain two summers ago, he was the one who found me the most spectacular surgeon. Year in and year out he was listed among the best doctors in New York in New York Magazine's annual doctor Oscars, and yet he continued to run a practice that cared for everyday New Yorkers, refusing to become a boutique practice that catered only to Manhattan's elite who can pay everything out of pocket.

I remember one appointment in particular, when Sweet M's father and I were trying to conceive — a project that took us so long that technically it qualified as infertility. I'd gone to see Steve very late in the day. He was so often at his office late because he always ran over time with his patients. Frankly, an appointment at his office was often trying because he was seldom on schedule in those years. The practice only began to run on schedule much later when he hired a wonderful nurse practitioner called Annie to keep him on track and manage the overflow. That evening his office was quiet, dusty and disordered because he was renovating.

He sat at his big oak desk and I sat in the patient's chair and I said Wow, Steve, you're renovating. And then, to my surprise, for just a moment our roles shifted to the story of his troubles. He told me that he had to do something: that he spent so much time dealing with getting insurance companies to pay, and then often not succeeding, or being paid for just a fraction of his time, that even he was in dire financial straits. He had to do something: the choices seemed clear. He could leave his private practice and go on staff full-time at the hospital where he also worked. Or he could rent out a part of the space to another practice and get a better office manager. He wasn't willing to stop accepting insurance, so he was renovating. I was reading Marx for my graduate work and we talked briefly about how the work of care becomes increasingly expensive relative to the production of things because, no matter how one tries, one cannot mass-produce one-to-one attention. We talked about the folly of healthcare for profit, we talked about the emergence of (mis)managed care.

And then with just a moment's pause we shifted back to our patient-doctor roles and talked about infertility. I said I did not want the high-tech treatments that I'd watched my friends suffer through — that I wanted to conceive or else just not conceive. He smiled with what I can only describe as earnest mischief and said I have just the thing for you. He swiveled around in his chair and started digging around in the credenza of his desk, heaped as it was with charts, files, bills, what-not.

"Here," he said triumphantly. He pulled out a small pink cardboard calendar . . . an ovulation calendar. "This," he continued with a sparkle, "is my magic fertility calendar. I don't know how it works, but every woman I give this calendar to conceives within months. Just mark down the beginning of your cycle and have lots of sex, and you'll see. It shouldn't work. But it does. It's magic."

I was meant to see Steve this morning at 9 am, for my annual checkup. We autism moms are notorious for not taking care of ourselves, and I am no different. I was going to see him because I am feeling the need to start taking better care of myself if I'm going to last long enough to launch my Sweet M to some sort of self-sufficiency. Since she's developmentally delayed, I'm figuring she'll need a couple of extra years for her launch, probably another five or ten extra years, so I'd better make every effort to be around for another twenty.

Steve's receptionist called yesterday to say that they'd canceled the appointments for today. When I said, Okay, so let's reschedule, she put Blossom, the office manager, on the line to share the news that Steve died in his sleep over the weekend.

Part of me has the heartbreaking and heartbroken feeling that Steve died too soon, died of caring too much in a world where caring less has become the only way to survive. Part of me thinks that the pressures of running a private practice under managed care were just simply crushing. But what I know for sure is that with his passing, some of the magic is gone.

Technorati Tags: autism • Asperger's Syndrome • ADHD • learning disabilities • speech-language disorders • autistic girls • Steven Tamarin, M.D. • obituary • unspeakable sadness • mourning

"Ages 3 and Up" — Or Way Too Many Toys

Sweet M's letter to Santa, October 28, 2008

In late October, after the Toys R Us catalog arrived with the Sunday newspaper, Sweet M sat down to write her list for Santa. She was trying to avoid thinking about Halloween, a holiday she loathes, by looking forward to Christmas. And unlike any of the other 11-year-olds at her school, she still believes in Santa.

Her Christmas list was long — very, very long — and both bridged gender roles and spanned the ages — the developmental ages, that is. She was as ecstatic thinking over the possibilities of a Dora designer dollhouse as she was about a Pokemon Mystery Dungeon DS game. She was as enthusiastic over the Leapfrog tag reading system as she was over the Hannah Montana videogame. When toy makers put "ages 3 and up" on the label, they must have been thinking of Sweet M. The "and up" applies in almost every selection. My friend Mom-NOS observed a similar developmental spread in her boy Bud's toy selections.

I was the scribe for Sweet M's letter to Santa. That is, I typed the letter as she excitedly listed the items. As her spirits soared with the possibilities of all the fun she could have, my spirits sank thinking about both the practical and theoretical implications of her list.

Practically speaking there is the problem of a list of so many items that I'd need to rob a bank to pay for the stuff. Well, scratch "rob a bank" and replace with "rob the Federal Reserve" since the banks don't have any money anymore.

And then there is the problem of where to put whatever stuff we might get. Our apartment is small — as are so many New York City apartments — and given her very expansive developmental span, we never quite know when she's done with something. Legos to the Goodwill, or keep 'em another year? Talking Amanda to the Salvation Army, or hold on for another round? Barbies to the niece in California, or keep those Barbie travel trains and remote control convertible cars ready at hand? Right now our apartment has taken on the look of a Manhattan Mini-Storage for a daycare center: we have enormous bags of stuffed animals, bins of Barbies, Legos, and art supplies, and shelves of games and sporting equipment.

And then there was the more serious problem: how to teach her about other values? Last year I took her to Operation Santa at the 34th Street post office and we chose two letters. One was from a teenage boy asking for a Strawberry Shortcake doll for his little sister and the other was from a new mother asking for infant clothes for a newborn. Sweet M didn't quite understand what these letters were, or why we were shopping for stuff for other people — people that we didn't know. I explained that Santa needs helpers because there are lots of kids in the world and only one Santa, but that didn't sink in for quite some time. For Sweet M, who does genuinely have a sweetness and kindness of spirit, imagining the needs of others is still what her teachers would call "emerging."

When we finished her 2008 letter to Santa, Sweet M eagerly addressed the envelope — to "Santa, North Pole" — and I dropped in the mail that evening. I know it will wind up at the post office on 34th Street, and imagine that some adult like me will read it, and likely think: "Wow, what a materialistic spoiled brat" rather than, "Oh, a child on the spectrum with an emerging sense of empathy and compassion and a passion for the concrete world of things."

What Sweet M has taught me today is that at autism's edges empathy is a road that has to be paved in two directions. We'll head back to Operation Santa next week — they open on December 2nd! — and we'll hope to see you there.


Sweet M's drawing for Santa.

Technorati Tags: autism • Asperger's Syndrome • ADHD • learning disabilities • speech-language disorders • parenting • family life • Christmas • autistic girls • Operation Santa

Post-Paxil, or On Feeling Like Oneself

Lately when Sweet M has a new expression. When she's not feeling well, she says, "I'm not feeling like myself."

When the horse she likes best at her hippotherapy program tried to buck her off, as he'd done with several kids, she was completely calm as she reprimanded him with a sharp reproach, saying "Tank, don't do THAT. You scared me." Later she told me, nonchalantly, that it was okay, that "Tank wasn't feeling like himself."

In the middle of August we decided, in conversation with Sweet M's doctor, to shift her off of Paxil and onto a different selective-serotonin re-uptake inhibitor, Prozac.
I'd be lying to you if I said that I wasn't terrified about making the change. Sweet M had started on Paxil at the age of five when her anxiety, inflexibility, and subsequent tantrums were debilitating not only for her, but for all of us as a family.

The results of introducing Paxil when Sweet M was five-years-old were nearly immediate and dramatic: her obsessive-compulsive behaviors and rigidity stopped within two weeks, and her speech-language therapists were flabberghasted by the huge gains she made over the course of a Christmas holiday break. So despite my apprehension about putting a child so young on a medication with blackbox warnings, and despite our serious problems with this medication in its liquid form, I don't regret the decision. Paxil was, for our family, nothing short of miraculous. So I was very apprehensive about making the change to a new medication.

The trouble was that Sweet M was gaining weight. Paxil is notorious for causing everyone to pile on the pounds. So slowly and steadily, under the careful supervision of her psychiatrist, we began the shift to Prozac — an SSRI that is thought to be weight-neutral in kids. The transition period took nine weeks, reducing the Paxil 5 mg at a time and slowly introducing and upping the Prozac.

As the Paxil was reduced we saw a face of our sweet girl that we'd not seen in years — a fresh-faced exuberance and much, much more expressive language. It is hard to describe the change, but all I can say is that she was suddenly there — she was suddenly more emotionally available. The Paxil seemed to have shut her down, or shut her out, producing the disaffected affect that we were mistaking as part of her neurological or psychological profile. Her teachers reported that she was suddenly more present in class, participating in discussions and saying hello to others without being prompted.

All was well until the last week of the transition, when the last 5 mg of Paxil were eliminated while the Prozac was kept steady at 20 mg. Sweet M was suddenly not herself at all. Though, admittedly, it is hard to say what being herself would be given the presence of psychotropic meds in her life for six years, this next round of changes were disconcerting indeed. Suddenly, in that first week without any Paxil, she was inexplicably sad. She'd retreat to the bathroom saying "Can I be alone?" and turn on the shower, and I'd hear her in the shower sobbing and sobbing. When she came out I'd ask if she was okay, and she'd say, yes, I need to drink some milk and go to sleep.

I was hugely troubled by the this, even as she dropped five pounds in two weeks (with no other changes in eating or exercise). When I consulted with her doctor, he advised that we stay the course and give it two more weeks before potentially upping the Prozac.

We didn't have to up the Prozac again. The weeping stopped, and we now have a girl who is increasingly verbal and without obsessive-compulsive symptoms. The weight loss has leveled off, but the gains in better affect are apparent every day.

The morals of the story are, I suppose, 1) be willing to shift course (change the medication), 2) be willing to stay the course (wait that excruciating, tearful two weeks), 3) be sure you have the very best psycho-pharmacological advice you can find, and 4) be willing to let oneself, or one's child's self, be a multiple and ever-evolving terrain.

White Gloves and Party Manners, or Elegy for an Aunt Departed

Earlier this week my aunt passed away from complications related to lupus. She lived a long life, nearly eighty years, had five children, four grandchildren, and dozens of nieces and nephews, friends and in-laws who treasured her in life and now mourn her loss.

We called her Aunt Sissy because she was the only girl in a brood of six siblings, so she was Sis to all her brothers, and Aunt Sis to us. She and my father were siblings and verbal sparring partners. Family gatherings — we shared all the birthdays, holidays, Thanksgiving, Christmas, Easter and sometimes Memorial and Labor Days to boot — often erupted into verbal fireworks over the Vietnam war, the hippies, or the travesty of Vatican II. Aunt Sis held her ground against my father, which was no easy feat, and through her example insisted that a woman's opinion mattered no less than any man's.

Aunt Sis was exactly the sort of aunt one hopes for — one who can see what you need that your parents can't quite fathom whether from a sheer sense of overwhelm or inadequate perspective, or both, as parenting is essentially an exercise in overly engaged inadequacy.

At eleven years of age I was a great worry for my parents. I was smart enough, to be sure, but also peculiar. I had no friends, and no interest in having any. I read continuously, usually three to four books from the library each week. I worked my way through the books, mostly sci-fi, fantasy, and other lowbrow fiction at a breakneck pace. Loved the Lord of the Rings. Isaac Asimov. Robert Heinlein. Ray Bradbury. Played with a chemistry set. Wore big coke bottle glasses and read and read and read. Retrospectively, of course, I now know that I was a geek in the land of beach blanket bingo. But at the time, I just knew that I was odd, very odd indeed, and not likely to be approaching anything resembling normalcy without a concerted effort, if at all.

My parent were at a loss for what to do. Piano lessons? Perhaps it would help my social skills to be able to play the piano — even if you don't talk with people, you can always play a tune, or so went the reasoning. Never mind that my fine motor skills were not well-suited to the instrument and I had little sense of pitch and even less sense of rhythm.

My aunt had other ideas. In her wisdom, she figured that the door into my mind was through books since reading was what came naturally for me. For my eleventh birthday she gave me a copy an etiquette book for girls called White Gloves and Party Manners.

I was stunned by this little yellow treasure, a "how to" book for girls to learn "proper" behavior. The cover had a line drawing of a lovely young woman in a diaphanous yet ever-so-modest dress wearing white gloves. I found her, and the book's contents, immensely exotic.

There were instructions on how to address various adults: Should you meet a judge (not of the Supreme Court) you should say, for example, "How do you do, Judge Jones?" And if you meet a judge of the Supreme Court, you should offer your hand, or even curtsy, and say "How do you do Justice White."

From my neighborhood, overlooking a Los Angeles beach town, there was very little chance of encountering a judge, let alone a Supreme Court Justice, but it's always good to be prepared. Equally exotic were the instructions on how to eat lobster and which fork should be used for the salad versus the seafood.

I devoured White Gloves and Party Manners, treating it like the fantasy fiction that it was for me . . . I'd been reading Ray Bradbury's Martian Chronicles, and this read like some strange sort of Eastern Seaboard Earthling Chronicles. Imagine: somewhere people use fingerbowls, eat lobster, and write thank you notes on printed letterhead. I had no idea where this place was, or what this etiquette might do for me, but it alerted me to the fact that there were other places and also rules of conduct that one could study and follow . . . that if you were observant and exacting, you could figure out how to get along.

Over the next years I would study how people behaved, and read plenty of self-help and etiquette books as well so that eventually I could easily pass for neurotypical. When I tell anyone now that I was once as anti-social as my own dear Sweet M, no one believes me. When I say that I did not speak with anyone at school for five years (other than to respond to teachers' questions) no one believes it possible. But it's true. I was a geek, bonafide, through and through.

In the autism world we call this "broader phenotype" — when a relative has characteristics of someone on the spectrum, but doesn't qualify for a diagnosis. Socially impaired kids like me weren't diagnosed back in those days, we were just weirdos to be shunned or left to our own devices.

And Aunt Sis got it. She got that I was a geek. She didn't freak out about it. She didn't reject it. She didn't try to change me. She saw the way in — through a girl's etiquette book — to help me find a way out.

And all the years I've been posting on this blog, she has been my steadfast reader, often emailing me words of encouragement and urging me to never give up on my sweet little one, like she never gave up on any of her own kids, or nieces, or nephews.

This week was Sweet M's 11th birthday. Aunt Sis got to see her a month ago at my sister's wedding. She didn't quite get to see her through to her 11th birthday. I don't think I will be giving Sweet M a copy of White Gloves and Party Manners. Books aren't the way into her. But I will always have the power of the recognition that Aunt Sis gave me, and I carry that into my parenting of Sweet M.

So I will miss Aunt Sis. Wish I could imagine she's reading this blog from some other dimension — somewhere with lobster for dinner and fingerbowls to boot — but for the moment I'll just remember the generous force of her recognition and affirmation, and all that she has given me. Not etiquette, or manners, or airs to be put on, but something like grace.

Bears Everywhere

This afternoon Sweet M made this drawing . . .


Usually her drawings are of houses, satellites, female figures, cupcakes, treehouses, and butterflies, so I was a bit surprised by this frightening image.

When I asked her what it was, she said, "It's a bear."

When I said it looked looked cool but scary, she said, "Don't worry — it's just a bear mask."

I wish that adults trading stocks in our mutual funds could have the same sanguine outlook on the bears that are running through Wall Street.

Perhaps it's not a bear market, but a bear mask market — all make-believe like the fictitious wealth that preceded it.