Pilgrim's Progress

Just two weeks back you could have found me afloat in a pool that sported a water slide shooting out from a replica of the Mayflower and a jacuzzi embedded in a simulated Plymouth Rock.

Yes, I was in Plymouth, Massachusetts, home of those pilgrims whose fall feast has morphed into the annual turkey-eating-fest that we've just finished celebrating.

So what sort of pilgrimage would take me to Plymouth? What you might expect at autism's edges: scaffolding Sweet M on her journey.

Her class was setting out on a three-day field trip to visit the sites — the replica of the Mayflower in the harbor, the Plimouth plantation, and the grist mill that ground grain for the pilgrims in the years after their arrival. And there were concerns about how she'd handle the three days, two nights away field trip. Last year's trip to a nature preserve had gone okay — she was with her aide — but still there'd been plenty of tears and homesickness. Since Sweet M no longer has that wonderful one-on-one who helped her last year—just another bit of fallout from the state's budgetary shortfalls — her father and I went as her shadows.

Our goal was to be neither seen nor heard: but just to be nearby in case we were needed. For Sweet M's amusement we called this Operation Secret Parents. Some might call this Operation Helicopter Parents, but I suspect that anyone who would think that has never parented a child on the spectrum. We'd rather scaffold and buttress than pick up the pieces if something goes horribly wrong.

Initially little M thought she'd want to see us on the morning of the second day, but the morning came and went without a call from her teacher, so we settled into touring the sites (on the opposite itinerary from her class, avoiding them at every turn) and visiting with some old friends whom we ran into near the town's grocery store, with me taking time out to grade some papers and write a new syllabus for the spring semester.

By the end of the second day, we'd heard nothing from Sweet M and when the suspense was just too much, we spoke with the principal who told us all was well. One of Sweet M's roommates had been homesick and wanted to call her mom, and M had said, "Why would you want to call your mom -- you're just going to see her tomorrow."

Easy for her to say with her own mom just two floors away!

But still, this is is progress. Scaffolded, buttressed progress. Perhaps over weaning, we sometimes think. But then we have no idea what the trip would have looked like if she'd gone on her own too soon for any reasonable level of comfort. Next time she'll no doubt voyage solo.

So we have some progress of the pilgrim-y type: something for which we're so very thankful.


An appropriate street sign from Plymouth.

Hearts Are Ungraded

Even though Sweet M's most recent drawings have not show her embedded in a community as she was last year, one of last week's shows her surrounded by hearts.

You've gotta love this girl, and apparently plenty of people do. Art may be graded, but it seems hearts are not.

"Art Is Not for Grading"

Sweet M had been holding up pretty well with the transitions that middle school has brought.

There had been some tears, and there was the return to the image of the solitary flower, but she was mostly buoyant and enthusiastic, especially about the upcoming school dance and planning her birthday party.

She was handling the two hours of homework each night. Yes, that was "two hours," not a typo. (And it's not just two hours for her . . . the kids are expected to do two hours of homework after an eight-hour day.)

She was suiting up in her sweats at home on the mornings when gym was the first activity of the day and participating in the field-day-like activities at a track by the river.

She was tolerating the fact that now they have just a 15 minute recess with no other breaks.

She was bewildered that library — her favorite thing — was no longer part of her schedule, but we'd started going to the local book store each weekend to give her the "book browsing" feeling that she seems to love.

She was managing the transitions of going from classroom to classroom as they do in a schedule that reproduces the model of the typical middle-school.

And she'd even gone out with her classmates on the out-to-lunch day that her school starts in middle school, though she'd stuck with eating her lunch from home.

Overall, she'd been keeping it together pretty well, albeit with some tears here and there.

But the other night, the night when she'd wished to take out the ancient Greeks so as to nip in the bud the whole idea of school and gymnasium, she told me, voice cracking, heart breaking, what was troubling her so much . . .

"I can't believe it. They're going to grade our art," she sobbed, voice shaking and tears streaming down her face. "How can they grade our art? Art is not for grading, art is for self-expression."

She spoke slowly and struggled for the language to say this, as this is not something that we've ever discussed. But she had the idea fully-formed and articulated her dismay and disbelief, her sense of injustice, of something utterly wrong in her world.

She seemed to have the sense that they would be grading her very self.

I told her that I agreed with her completely — that art is for self-expression — but also that since she is such a good artist that she doesn't need to worry at all about her grades in art.

This seemed to be only a modest consolation.

For her, it seems to be the principle of the matter.

Amidst all of this bewilderment, her artwork has returned to the motif of the solitary blossom on a landscape. And this lone tree in the moon light.

Putting Down Roots

One of the reasons that we worked so hard to keep Sweet M at her current school was that we could see from her drawings that something was changing in her sense of relatedness.

These drawings from her series of flowers, trees, and cacti are from the fall and winter of last year . . .















We're not art therapists, but it looked to Fathersvox and I that she was, bit by bit, feeling settled. Between September and January the image of the solitary flower gave way to the image of field of blossoms, and even the cactus in the beating sun could send down roots in search of nourishment.

With her medication changed, and the help of her amazing one-on-one, Sweet M was feeling connected. Disrupting that would have been foolish, though allowing the school to eliminate the services of her one-on-one seems to have been almost as disruptive.

Last week Sweet M brought home this image she'd drawn . . .













A single flower blossoming under a delicious yellow sun, but singular once again.

September's Questions

The month of September brought us countless questions, often uttered between sobs of deep grief:

Why do kids have to go to school?

Why can't kids just stay home and learn?

Why are the teachers always, always talking? They never stop talking.

Will I go to college?

How soon can I go to college?

Can I go to college where you teach?

If kids are really smart can they do high school in two years?

Can I go to another school -- a school where kids don't have homework and can wear whatever they want and don't have P.E.?

Can you find me another school, a better school?

And an extra mysterious one --

Why can't scientists make a time machine and go back in time to make sure the Greeks don't exist?

When I asked why would you want the Greeks to not exist, Sweet M's answer was:

Because they invented school, and gym, too.

Sweet M wants to nip this whole mandatory school thing in the bud, go right back to the start of it and keep it from ever being invented.

My girl is feeling overwhelmed and I don't have any answers for her.

Not yet anyway.

To the Ends of the Earth

A willingness to go to the ends of the earth for our kids is something that autism seems to inspire in many of us, but few have done so as literally as Rupert Isaacson and his wife, Kristin Neff, who took their autistic son Rowan to the steppes of Mongolia to seek the help of shaman healers. The Horse Boy: A Father's Quest to Heal His Son is Isaacson's moving account of that journey and its many challenges, along with the healing and hope that the experience brought him and his family.

Over here at Autism's Edges, we have not quite gone to the ends of the earth to help Sweet M, but we have been going to the middle of Long Island for the past year— to the Melville home of HorseAbility — where Sweet M has been learning to ride.

More recently — because we're out in California for a couple of weeks — we sought out a corral in Chatsworth, California, where Sweet M road with the fine team at Ride On.




We found Ride On through the website of NARHA, the North American Riding for the Handicapped Association.

NARHA is a great resource for families with kids on the spectrum. And Isaacson's book makes a terrific case for keeping (or bringing) horses into our kids' lives.

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.