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.

The first hint of the formality of Alex’s graduation from fifth grade to came in the cab on the ride to his school, when Jill’s cell phone rang. I heard Jill say the name of Alex’s teacher. “He’s sick?” I thought. “This morning of all mornings?”

No. Instead the teacher wanted to know if we’d gotten the message about dressing all the graduating kids in black and white for the ceremony? I had some memory of that but not a strong one — at this point in my parenthood only a drop of guilt can turn into a real past event in my head. Alex went to school in khakis and a T, and good luck getting him to wear anything else these days.

Teacher got him into a white baseball T. Alex was one of two kids in his special-needs class graduating, the rest of the graduates made up of kids from the typical school Alex’s classroom sits in. The kids were in summer dresses, little suits, some ties, all of their shoulders draped in the school’s purple grad banner. Most of the parents were dressed to match, minus the banners, of course. I showed up in cargo shorts and a short-sleeve button-down shirt and Chuck Taylors. Why hadn’t I foreseen this moment? For a moment I told myself that being the parent of a kid like Alex should give me a built-in excuse, but that sounded feeble the instant I said it to myself.

I hadn’t, and the moment soon took me in the throat. There were all the kids and all the awards, all the balloons and all the digitial camera phones and all the applause – no great amount of the latter but certainly no small amount of it, either, for Alex and his autistic classmate, even as Alex kept escaping on stage to see what was behind the drawn curtain. In his white baseball T and khakis. Once he got a laugh. Halfway through the ceremony, I saw he’d shed his banner. He won an award for reading, along with four typically-developing students.

About that same time, it hit me that this was it. Jill has already talked about the kindness of this place, a kindness I confess I’ve taken for granted for six years. It hit me that maybe this was the end of this kind of kindness, for a little while, and I just didn’t know it yet.

Leaving too was the assistant principal, off to assume the big chair at a special-needs school in Queens. She was a unit teacher when we met her a few years ago, rising soon to assistant principal, and this fall, when Alex gets off the bus in a strange place and it hits him that “school” now means something dramatically different, she will be far away. I’ll miss her and miss them all in the way I didn’t realize until this ceremony, when it feels like I graduated in a way, too.

***

President Obama announces new initiatives to help Americans with disabilities.

If I can stop crying long enough, I can write a few thoughts on Alex’s graduation from elementary school.

Alex’s school, a NYC public special ed school, has a bunch of locations. They’re schools-within-schools: a few classrooms in a general ed school. In this case, an elementary school in Washington Heights whose only drawback is how far it is from our apartment.

Unlike many other schools, the principal of the general ed school — Tracy Walsh — is unusually welcoming to the special ed students. Near the end of kindergarten, Alex came home with a graduation day t-shirt from PS 48. What’s this? I thought. Alex isn’t graduating. Alex doesn’t go to PS 48. On the back of the t-shirt were all the names of the graduating students. And Alex was one of them.

Six years later, Alex came home with another graduating t-shirt. Alex is graduating, we realized. And there was his name.

On the way to school we got a phone call from Alex’s teacher asking if we were bringing black pants for Alex. Apparently a letter was sent home (we never got it) asking the graduating students to wear black pants and white shirts. Even if we’d gotten it, I think it would have been near impossible to get Alex into black pants: he only wears khaki.

When we got there, June (his teacher) had somehow gotten him to wear an unfamiliar white t-shirt AND he was sporting a blue ribbon sash. Through the crowds of parents we could see Alex sitting with his teacher. We read the program: Alex would receive two awards, one for reading and a special UFT (United Federation of Teachers) medal of achievement.

When he went up to the stage, he was always accompanied by his teacher or an aide. Good thing, because he found the red curtains on the stage irresistible. People laughed, but not unkindly. They applauded when his name was read. Alex’s teacher read names for some of the awards, and the assistant principal of his school, who is leaving to become a principal, was honored. And I think this is what makes me so weepy. It was no surprise that Alex would be somewhat wander-y or would need someone to help him on and off the stage. But that his classmates and teachers and administrators would be so much a part of this big, glorious celebration was unexpected (I know, I should guessed from those t-shirts).

It’s not like this in a lot of schools. General ed principals can be uncomfortable with our kids — and in some cases downright unwelcoming. I’m sad that Alex is leaving this beautiful school that was so accepting of how different he is. I know the rest of the world doesn’t have the same serene acceptance of people who are different. But really. Every school should be like PS 48. Every principal, every leader should conduct with the grace and kindness of Tracy Walsh.

We bought flowers for Tracy Walsh yesterday morning,  who shrugged off all thanks and said, “They’re all our kids.”

1. Elmo (sadly) remains a favorite. Maybe it’s just a comforting habit now; he doesn’t seem riveted the way he did when he was younger.

Photo by Kitten Fleming

2. Chocolate chip cookies. (Never-fail recipe secret here!) Equally enthusiastic about homemade and freshly baked or dusty old Chips Ahoy.

3. Prefers homemade brownies. The first time he had them, on Christmas Eve about four years ago, he followed me around for about an hour saying, “Brownie? Brownie? Brownie?” (Note: After several different recipes, I’ve settled on the sublime Katharine Hepburn brownies with an added half-teaspoon of almond extract.)

4. The part of “Arthur’s Pet Business” where Arthur’s baby sister Kate wails. Loudly. He loves to rewind to this part. Sometimes I hide that tape for a few wail-free hours. It is permanently seared into my brain.

5. Have a hardcover book with dust jacket? Alex will thoughtfully separate them for you. (He’ll also slip the bookmark out, so I’ve gotten in the habit of glancing at the page number.) If it’s a library book and the jacket is in the plastic slipcase glued to the book, Alex will rip it off. I don’t know why he does this. Usually he looks for things that go together and reassembles them (like slices of watermelon).

6. Bathtime. Warm water, splashing, no one to bug him (we’re usually watching TV while he bathes) — what’s not to love?

7. Alex loves repetition and predictability. A bookstore provides both in the form of endless shelves of similarly shaped objects and copies of his old favorites, which he revisits for a satisfying hour or so.

8. The epitome of order and routine — with accessible shelves of books to boot — school is such a favorite place that Alex often stops at the locked doors of whatever school he happens to be passing on weekends and holidays.

9. We might be going to a suburban supermarket, a Westchester museum or Stew Leonard’s. Alex is always up for a car  ride. (We occasionally rent from Zip Car.)

10. Sometimes it’s the farm yard assortment of ducks, cows, chickens, geese; other times lions and tigers and elephants entice him. Either way, plastic animals remain a source of great attraction.

This is the time of year when the weeks start speeding by. Coming up is our last Saturday of respite for Alex. School trips (St. John the Divine, the Bronx Zoo, IHOP) are coming fast and furious.

Ordinarily we get through it and know that in the fall it’ll all start up again. But Alex turns 11 in June, and the NYC Department of Ed. considers him a middle-school student as of September. Where will he go? We have no idea. His school, which goes up to age 21 and has multiple sites throughout Manhattan, has two middle-school programs. We visited one and thought it was OK, but it has no spots available.

photo courtesy of Bill Ward's Brickpile (flickr.com)

Ned goes to a school that houses five different programs — his elementary school, four small high schools and a special ed. middle school program. Could my sons possibly go to the same school building, if not the same school? Maybe. We called the Department of Ed. placement office and were told they have no seats, but that we should call our principal and ask her to reach out on our behalf. We did.

Then Jeff gave a talk and someone from the Department came up afterward to talk to him and tell him about a language-based program that might be good for Alex, so we’re looking at that too.

A few weeks ago, when we started thinking about the fall, we just assumed Alex would stay somewhere within his school, or perhaps try the program in Ned’s school. I liked them because last spring one of their teachers told me they expect their students to reach for college, when possible.

About the only thing I do know right now is that the day after Labor Day, a yellow school bus will pull up to our building and take Alex to school … somewhere in New York City.

The NY Times just ran a story about how parents of kids with autism cope when their schools are shut because of swine flu. As a kid, I would have loved a school shut-down (I certainly have happy memories of the teachers’ strike) but now I’d hate it. First, it would mean entertaining Alex all day long. Second, it would mean coping with Alex’s fondness for staying inside and watching Elmo or Arthur all day long.

It raises the question, at least to me, of how difficult it can be for parents of special needs kids to work. It can hard enough scrambling for a last-minute babysitter when you have typical kids, and you can look forward to a time when they won’t need supervision.

Recent I joined a sped educators’ board over on LinkedIn recently, “Special Education Innovators.” I’m not a special educator but I like to think some of them would like to have a parent’s perspective now and then.

Discussions are half the fun of LinkedIn groups, and when things are slow I like to pose a question. So I posted: “What’s the best and worst thing for educators when it comes to dealing with parents of kids with special needs?”

Image: usgarchives.net

I got two responses, both insightful.

“The Best?” replied one group member, “Concerned parents who are honest with themselves about their child’s needs. They are generally better informed, and maintain a healthy collaboration with educators and related service providers. The Worst: An aggressive, uninformed parent who comes to school once a year to make unreasonable demands for academic results. They rarely even check their child’s bookbag for teacher communication. Parents who work two jobs, group home guardians, and unconcerned parents rarely make any contact with professionals.”

(Two jobs? Will this economy spare no aspect of our lives, not even parent-teacher conferences?)

“The best thing you can do is stay informed and involved in your child’s education and have realistic goals and dreams for him or her,” replied another member. “Also, make sure your expectations for the teacher and school staff are reasonable, as well. Most teachers I know welcome open communication between home and school and an informed, supportive parent is wonderful. The problems come when the parent becomes so focused on his or her child that he or she forgets the teacher has other students for whom she’s responsible, as well as other school-related activities, and begins to put unreasonable demands on the teacher’s time and attention.”

We’ve tried to adhere to these rules with Alex and his teachers. We send at least as many notes back to school as we receive, and have often been the ones initiating exchanges. We slate our parent/teacher conferences outside the set and regimented days and hours, as long as his teacher agrees, because we figure it gives the teacher more time to talk to us and more brain space to think about Alex. Jill also teaches knitting every Friday morning in Alex’s class, so gets a chance to see how he’s doing real and close up.

The Alex we’ve seen in the classroom - velcroing the right date to the wall calendar, leading the “Pledge of Allegiance,” taking classmates by the hand - is often heads above the Alex we see at home, where every afternoon off the bus he just wants to shed his khakis and munch a few pretzels on the way into evening. The Alex we see in the classroom, I like to think, is more like the grown-up Alex we’ll someday launch into the world. Seeing him this way is well worth shuffling the schedules and making time to stay informed. Hope it stays that way after one of us has to get a second job.

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.

Bats hibernate in caves hanging upside down. All about me! Things I like to do. Things that begin with L, M, S and T. Giddy-up dot-to-dot. Help find the right word. Frosty fun.

These are Alex’s homework sheets - Xeroxed pages from the Internet or from old workbooks. They’re mostly on a 1st- or 2nd-grade level, and he’s in the equivalent of 5th grade. I guess what I’d really like to know is, what does Alex think of them? He seems to like our family reading time now, though he doesn’t always sit with us. He never turns on the TV, though, so I know he gets that it’s a time for books and quiet activities.

What’s the next level going to be after he leaves the school he’s been in since kindergarten? (Note: special ed. kindergarten was pretty similar to typical kindergarten.) The way things look now, he’ll be spending the rest of his school years, till age 21, circling the animals and finding the coins he needs.

Ned’s school is in a building that used to be a high school* but is now an “educational complex” that houses six different small schools. One is Ned’s. Another is a District 75 middle school. (Like Area 51, special ed gets its own district and number in New York City’s Department of Education.) I visited that school one day after looking at the bulletin board displays in the hall. I saw neatly written compositions. I saw thoughtful essays - short, but clear. The kids don’t seem that different from Alex. Unlike some students with learning disabilities, who are virtually indistinguishable from typical students without IEPS, these boys (they really are all boys - I can’t recall ever seeing a girl) all seem pretty clearly on the spectrum. They rock. They smile. They stim a little. They look not to one another for guidance or support, but to teachers and aides who are always nearby.

In all Alex’s years at his school, there has been love, support and the expectation that he’ll be there through age 21. But when I asked the parent coordinator at this school where their students went onto high school and after, she said, “We have an expectation of college.”

College! Could Alex go to college? I’ve never really thought he could. And if he doesn’t go or doesn’t want to go, that’s OK with me. I want him to be happy and to be able to support himself if possible. But if he CAN go to college and this is overlooked by people who think that he’ll never be capable of more than just matching the shapes with the objects, well… that would break my heart. I’ve been guilty of underestimating Alex on many occasions. But I do trust the pros to estimate him accurately.

Next step - visiting the middle schools in his own school to see where he might go next year, and talking to the middle school that’s in Ned’s school building.

*Fun fact: My mother’s best friend went to high school at this very school (when it was still a girls’ high school) in the mid 1940s! (She is not in this picture, but you get the idea. It was Another Time.)

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.