A couple of years ago I began thinking about “The Miracle Worker.” Specifically that moment when Annie Sullivan realizes she’s never going to get through to Helen Keller while she’s at home and her parents indulge her and give her candy whenever she starts to have a tantrum.

If only we had a teacher who could take Alex away for two weeks — reach him and teach him, put him in TV detox.

Little House by the Apple Tree (photo by Uncle Phooey, flickr.com)

I’m ashamed to say Alex does not eat with us at the table. He has some other behaviors we don’t like (constant TV-watching, for one) that we’ve allowed to become entrenched. I guess we might just as well have allowed him to wander from plate to plate, grabbing whatever food pleases him.

It began to seem as if Alex does have some things in common with Helen Keller: he’s so hard to reach sometimes. We’ve let certain things slide because it’s just easier. Inside him is an intelligence that’s something to reckon with, and it’s easy to overlook with the rocking and sparse language. If it’s hard for us to get in, I think it’s just as hard for him to get  out.

We watched “The Miracle Worker” the other night because Ned has been reading about Helen Keller in school. This time,  my reaction was mixed. Instead of cheering Annie Sullivan on I thought she was a bit harsh, a bit impatient. I wish she had been more willing to spend a few days just getting to know Helen. Everyone — the mother, the father, Sullivan herself — was a bit wrong and a bit right.

The parents definitely underestimate Helen and indulge her. But they love her. And they want a teacher who’s able to achieve a more affectionate relationship with her. Sullivan definitely wants Helen to communicate and learn. But she’s so rough. It was more painful than I remembered.

Even so I’m left with the sense sometimes that if Alex is going to come out of his shell it won’t happen at home where we indulge him and give in to him because it’s easier and we’re tired. It will happen with some teacher, somewhere, sometime — questions I obviously have no answer to.

An item in the inbox has made me think of Alex’s future worklife: CareerAdvice, “Succeeding at Work With Autism.”

Citing such luminaries as Temple Grandin, the piece discusses how the workworld needs to prepare for an influx of autistic adults as those “1 in every 150″ mature, and what skills the autistic possess to handle a job. “Jobs requiring specific, concrete tasks such as library cataloging, equipment or graphic design, data gathering and mathematical modeling are well-suited to autistics,” reads the piece. “They do less well in positions requiring complex social skills, such as management. And jobs that depend on multi-tasking, such as being a restaurant hostess or receptionist who must simultaneously answer phones and type, are also poorly suited to autistics.”

Image: sxc.hu

Library cataloging? Definitely, as long as you teach Alex not to take the dust jackets off the books first. Equipment or graphic design? Not for him in my opinion, but that’s due more to his inate abilities and talents than due to autism. Data gathering and mathematical modeling? Maybe the first; I’m not sure what the second is, so I guess I’m not suited to it, either.

Surely there will be somebody who just needs something put in order? Or done over and over? Hell, I’ve had more jobs like that than I can remember.

I can’t imagine Alex, who’s almost 11, holding a job (or voting, or driving a car). He has answered phones, though he’s better at hanging them up in the proper cradle. I wonder if he’ll ever make a reservation, let alone take one. I certainly can’t imagine him managing anyone, unless his job was to direct staffers to Elmo DVDs or bags of pretzels.

This isn’t to say he’ll never do them. But like so much of being the parent of an autistic child and like so much of what I have to continuously fight, it is to say I can’t now imagine him doing them.

I’m helping an undergrad prepare a term paper on “family intervention” (does that include Merlot?) and its “positive effects” on autism. The report aims “to inform people about autism and ways family intervention help it.”

That help is a sound theory, at least until Alex’s parents start screaming. We intervene with Alex when needed: pick up toys; sit with us through family events and not run off to the TV to blast Elmo; stop at the edge of the curb; please someday eat more real food.

This student is questioning a friend with autism, in addition to, among parents, at least Jill and me. Her topics will include the definition, symptoms, history, and prevention of autism (ah, youth — good luck with that last one!), then flow into how families can help their own kids.

We help Alex any way we can think of, which often and sadly isn’t much, and I’ll loudly echo Jill here in saying that Alex has become superb at setting a table - handles of the coffee cups all pointing the same way! And, once cranked up, he puts laundry away with the best of them. He also seems to want to fly into putting placemats in the dinner table, though he doesn’t seem to want to eat with us.

Among the student’s questions:

Does family involvement help ease the symptoms of autism? (My answer: “Sometimes. Some people in social settings can have a hard time understanding Alex and his behaviors. Sometimes it’s easier having both me and my wife to help directly with Alex, though that can also cause strain as we might differ on how best to handle a situation.”)

How do you feel your other son has helped ease Alex’s adjustment? (A: “Alex’s teacher says that not long after Ned started taking Alex’s hand at home and getting him to play, Alex started taking the hands of his classmates in school, trying to get them to play.”)

And what I think is the big one:

Do you think that with awareness, society will learn to accept those with autism? (A: “Someday. Before then, however, a big bill may come due as these children age into adulthood.”)

She wanted me to explain that. I will soon, but I’ll start by referring readers to the link below.

This project gives me hope in that a person barely out of high school is weighing such potentially society-shaking issues as autism (and considering a career helping the autistic). I did my term paper on Trafalgar. Look where it got me.

Reprint of a Washington Post article on the potential price tag of autism among adults here.

Often through Alex’s seven years of formal education, I’ve had to learn why he does what he does in school. A few years ago, I was unsettled by the amount of coloring homework he brought home. How was coloring ever going to help him get a job, especially since he could rarely stay within the lines?

Image: sxc.hu

Then we went to a parent-teacher conference and I chatted with his OT. “When Alex does his coloring,” she said, “make him do it standing up, with the paper held against a wall. This strengthens his arm for writing.” I’d never thought of that. Were we correct in how we were teaching him how to write during homework? Well, no. We used markers at home, and his teacher called them “cheating, because they make the stroke evenly for you.” We should also have let Alex use only short pencils, she said, about the length of those you’re issued on miniature-golf courses, because they also prevented him from holding the pencil too far up.

One of Alex’s recent IEPs contained, at my insistence, teaching him to use a fork and teaching him to blow his nose. The fork’s a work in progress, but somebody sure taught him in the last few years how to use a Kleenex, and his number of respiratory infections has since plummeted.

The Alex in school, even special-needs fifth grade, is not the Alex at home. Once upon a time he would only cling to us when we visited his classrooms, and cried when we left. Then he went through a period of eying us askance when he found us there, then studiously ignoring us. Now he comes up and takes our hand but only for a moment, then heads off to his morning’s work the way anyone might if their parents popped into their office unannounced. This I find encouraging.

Jill and I were in a typically over-shopped Manhattan grocery store the other day. The shelves were disordered, and while Jill picked out her cans of chicken broth I straightened one part of a shelf, and a thought stuck me of Alex flawlessly sorting shapes and colors from about age 2.

Too bad he can’t pick the right stocks instead, I said to a friend then.

Maybe he can do that, too, she replied.

The thought came to me of Alex today, arranging toy animals by height and color on our living room rug. “You know,” I said to Jill in the grocery store, as I placed the green beans back where they rightfully belonged, “I have no doubt Alex could stock shelves some day.”

Alex can do much more, we’re coming to think, but we’ll find out what that is only as our education continues.

Learn more about IEPs at http://www.wrightslaw.com/advoc/articles/iep_guidance.html and http://specialed.about.com/od/iep/Individual_Education_Plan.htm. And Google “SEPTA” and find out about local special-education PTAs nationwide.

Along with reading goes writing. I started with a hand-over-hand method with Alex months ago, helping him fill lines of wide-ruled paper with words of things he loved: Mommy, Daddy, Ned, Toast (our cat, who he doesn’t love strictly speaking), grandpa, Aunt Julie, Uncle Rob, Elmo. Actually, we usually put “Elmo” first.

I held his hand as lightly as possible in mine during these exercises, guiding him only when needed through the letters. I hoped eventually to work my way down to his wrist, then to his elbow, then to let go entirely. The job was filled with unexpected delights: Once when a cold was going around the house, I tried to get him to write “cough.” We got as far as the C and the O when Alex asked, “Cold?”

The problem came when I tried to remove my hand. Alex was once penciling a line of ABCs when I pulled this. He patiently put down the pencil and reached out to place my hand back on top of his.

“No, Alex. I know how to write ABC. You do it…”

“You do it!” he said.

“Alex, c’mon. You can write this.”

“You do it.”

I think we actually did once write a line of “You do it”s.

We’re trying to do more short sentences now. Jill gave him a toy cheese wedge over the weekend, which he almost immediately began to play with, pretending to chew and swallowing elaborately. (This is a proven tactic for eventually getting him to eat real food.) I grabbed a pencil and a piece of paper and wrote, “I am eating cheese.”

When I show him these phrases, scribbled as soon as possible after he’s done something he enjoyed or asked a question or made a comment, Alex stops dead. Sometimes he looks right up at my face.

He placed his finger on the first word and said, “Eye. Eye want…”

“I am…”

“I am want-”

“I am eat…” I say, and let him finish:

“I am eating cheese! I am eating cheese!” We need to move on to little stories.

Temple Grandin offered her take on teaching autistic children to write here.

FICTION FOR NATIONAL AUTISM AWARENESS MONTH: Autism in non-fiction captures many headlines, but the condition shows up in fiction, too. The Library Journal offers a rundown of titles here.

This year is going to be different. After a number of semi-disastrous Passover seders, I’m loaded for bear. I’m planning like mad, and I’m boiling over with ideas. Alex is almost 11, and the clock is ticking. He likely will not be bar mitzvah’d at age 13, like most other Jewish boys, but he will be some day. And a key part of his Jewish education is understanding and participating in the rituals of Passover.

Step one begins with a purchase. A toy wooden Passover set by KidKraft, a company that also made a toy wooden Hanukkah set (menorah, candles, little wooden flames, a frying pan and some latkes or potato pancakes). Alex loves this set. I love this company, because when we lost one of the candles, I emailed them and ordered the part. They do not charge for replacements or shipping.

I’m willing to bet Alex will adore setting up the toy seder plate and putting the  matzoh in its matzoh cover. And I  love a child’s play set that comes with a play bottle of wine.

Step two. Like the old New York joke about how you get to Carnegie Hall (practice! practice! practice!) we’re going to have a number of seders. There will be a dress rehearsal the night before. There will be a mini seder with his classmates. I have to digress here and say while he goes to a public school, I really doubt there will be a problem about using any religious rituals in the classrooom. For years he’s been coming home with coloring sheets about Three King’s Day, St. Patrick’s Day and the Feast of Annunciation, complete with pictures of Mary and the infant Jesus. So a few Old Testament fun facts about Exodus and the flight out of Egypt should be okay.

I’m planning a bunch of mini seders, and they will all hit the same high points (candle-lighting, Four Questions, Ten Plagues, a couple of traditional songs and a round of dayenu).

On the night itself, we will have our seder. If all goes well, Alex will attend and participate. We will not ask as much of him as we have in previous years. The service will be short. He’ll help hide the afikomen, and he’ll get a nice gift from Grandpa. At least, these are my predictions.

Happy 2009!

We’re leaving tonight on the red-eye to go back from the Bay Area to New Jersey so, in the interest of being able to spend more time in the California sunshine with my guys and my parents, and since it is, indeed, 2009, a few more highlights from 2008.

August means one thing in my household—-two weeks at the beach, at the Jersey Shore. Not surprisingly, it was still impossible to avoid talk about vaccines. A new clinical trial of the GFCF diet was announced. While people have strong disagreements about the “right” of parents to vaccinate or not, everyone agreed that the use of “retard” in the movie Tropic Thunder was unncessary.

Charlie started middle school in September and, by October, he was deep into middle school blues, and Jim and I found ourselves back into the old familiar advocacy mode, including meetings with teachers present and past, Charlie’s case manager, ABA consultants, school district administrators (but not, yet, “legal counsel” of the sort this family in Montgomery County (Virginia) has had to take).

Also in September: A 13-year-old autistic boy treaded water for 15 hours off the coast of Volusia County in Florida, until he was found the next day.

Another study showed that the MMR vaccine does not cause autism.

And, with Election Day nearing, the choice of Alaska governor Sarah Palin—whose youngest son, Trig, has Down Syndrome—-as Senator John McCain’s running mate got the (Special Needs) Mommy Wars going again.

In October, I (former warrior mom that I am) was on a Science Blogs book club panel writing about a newly published book, I get a lot of hate mail”: Autism’s False Prophets by Paul Offit. (And I’ve not been feeling that I need beware Jenny McCarthy and her so-called angry mom-mob; I know that someone’s watching over me.)

More to the point than “debates” about vaccines and autism was the passage of the mental health parity bill.

And then, in the middle of October, was the McCain-Obama debate in which McCain apparently confused Down Syndrome and autism, and after which I was interviwed on Newsweek about the candidates.

Around the same time, Denis Leary did a Michael Savage, Charlie seemed to grow taller every week, and David Kirby exonerated thimerosal, and as quickly said he hadn’t.

November brought a new theory about autism and genetics, another suggestion for identifying autism in infants (”strange play“), and more speculation about autism and schizophrenia as the same. A mandatory autism registry was proposed in New Jersey; researchers began to look for autism’s causes at home; and I attended the November 21st meeting of the Interagency Autism Coordinating Committee (IACC), at which the draft of the Strategic Plan was discussed.

December, this past month, began with Autism Twitter Day, organized by Bonnie Sayers; an exchange about some dangerous ideas about autism, and some events concerning autistic rights, from an autistic girl in Wisconsin becoming a Brownie after being asked not to return to a special needs Brownie troop, to calls for the inclusion of autistic individuals on the boards of autism organizations. (This letter states why.)

And some final thoughts as 2008 ended: What would you like to see in autism legislation? (Something besides insurance coverage for specific therapies.) And isn’t it time for vaccine talk detox? (Yes.)

So farewell to 2008 and onward into the new year, which I suspect holds some more changes all the time for Charlie, and which holds a big one for me, too—-but more on that tomorrow, once we’re back home in Jersey.

Soon as December started, my students started asking me what we were getting Charlie for Christmas. I fumbled with an answer—what do you get for the child who doesn’t ask for anything?—and they seemed quite incredulous that he’d no desire for any electronic devices or a football jersey with X player’s last name emblazoned on it. I’ve been used to telling people that things are different with Charlie but, on further reflection, the thought occurred to me:

Charlie, at 11 1/2, is getting closer and closer in age to my college-students. Certainly there’s more than a few similarities between him and the tall guys with really big sneakers or Timberlands with legs too long to fit in the desks and always fishing around in a beyond dog-eared notebook for the homework they forget they had to do. But it’s been a new thing to conceive of, that, before I know it, Charlie will be nearing the age of a college freshmen—a young adult—an adult.

Well of course—-like anybody, Charlie is going to be an adult for most of his life. With his limited expressive language (two and three word sentences) and his struggles with his academics (finally finally he is writing both his first and last names), I guess some would say that Charlie “seems” or “is” a lot younger than his age; that, “mentally” he’s at preschool level or some such. I guess this might seem to be the case to some when they first see Charlie, taller than all of his cousins on Jim’s side (and that includes the cousin in his 5th or so year of college), and when some hear Charlie humming more than saying words, and when they see Jim and me hold Charlie’s hand as we cross an icy parking lot. But time and again I know, never presume too little competence, to little understanding.

Often there seems to be a sense of division—of interests, of needs, of priorities—between parents of young autistic children and autistic adults. Parents of younger children tend, understandably, to focus on early intervention and educational services, and ways to obtain and pay for such services. Talk about “autism rights” might strike some as absurd and beside the point in trying to teach a child to say his own name. But—while my son clearly has a lot of challenges and is most likely always going to need a lot of support to work and live—I find that, more and more, discussions about autistic adults’ needs and autism rights speak to him and his situation.

My son is tall and strong. I don’t believe that restraints or any physical procedures, and certainly not any aversives, are how to help him, at school and elsewhere. He’s in a school district that understands this but that’s not everyone and my son needs always to be treated with respect and in ways that acknowledge his sense of self, his dignity. Too often, this gets forgotten. Charlie has his reasons for organizing his stuff in the living room in a certain way and we don’t see this as odd or aberration, but as Charlie making sense of the world around him, in his own way, in a way that we’ve come to appreciate and then some.

I mean, I like to order the stuff on my desk and in my bag in a certain way; last thing I want to be doing is scrambling for the car key when I’m flying off to meet Charlie’s school bus.

The question that keeps playing in my head, truly, is: When Charlie is the same age as my college freshmen, will he be as tall as the tallest guys and with those seriously big feet?

Plans to construct a new 27,000 school for autistic children in Milford, Connecticut, have been put on hold after Planning and Zoning Board members questioned the design and material of the proposed school, today’s New Haven Register reports:

PZB Chairwoman Jean Cervin said the board specifically did not like the “rectangular box” appearance of the proposed school, and the metal roof. She also said the playscape is proposed for the front yard, and some members felt it was too close to the road, and should be placed at the rear of the site.

Cervin said PZB members do not object to the proposed 30,000-square-foot school, which includes a gymnasium.

“They do a very necessary piece of education for autistic children,” Cervin said.

Suzanne Letso, co-founder and chief executive officer of the Connecticut Center for Child Development, is concerned about the proposed changes increasing the price of building the school. Currently, the school has 45 students in one building and rents additional space for seven students from a church. Fundraising for the new school has been going on for seven years.

Notably, what’s missing from the discussion is what sort of design and classroom environment would be best for autistic students, but since when has that ever been the priority…….

The Florida legislature has declared the first half of October as Disability History and Awareness Weeks, today’s West Volusia Beacon notes. Indeed, the legislature is said to be “trying to change the negative image, perception and treatment of people with disabilities.” The article highlights programs for disabled students throughout the county, such as Deltona High School’s Multi-VE program.

VE stands for varying exceptionalities. Multi-VE students’ disabilities and challenges include hearing or language impairments, mental handicaps, emotional and behavioral disorders, multiple physical handicaps and disorders all across the autism spectrum.

Located in Building Z on the 92-acre campus, Deltona High School’s Multi-VE program serves more than 50 students, ages 14 through 21. They attend classes to learn to function independently and to acquire skills to help them gain employment after graduation.

At Deltona High School, “VE” really means “victories everywhere,” because students with disabilities are showing they can be successful in and out of the classroom — that they have abilities!

The classrooms and programs recall those in my son’s school district here in New Jersey—-but we could all use more of the “VE” attitude, wherever we are.