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.”

An informal survey conducted this morning in our dining room revealed that nine out of 10 arguments between me and Jill begin over autism.

Alex had been squatting on the floor last evening, flipping through a big hardcover about knitting. Fine, except he hadn’t picked up when asked (with him it generally takes about three requests, which to be fair is probably about what you’d have to fire at most kids), and I had tripped over this hardcover one too many times. So I tried to cram it back onto the bookshelf just as Jill grabbed her keys and we got ready to head out. Except there was another book jammed on top of the other books on the shelf, and I had to take it out to get the big knitting hardcover to fit.

Image: paloaltosoftware, flickr.com

“Jeff, what are you doing?”

“Trying to put this book back!”

“Stop snapping at me viciously!”

How would you like me to snap at you?

Snap we do, and often the root not that Jill and I don’t like each other at that moment, but that we’ve somehow crashed over something Alex did because he’s autistic. Books on the floor, something in the trash, some favor undone or something put somewhere it would be only be put if you didn’t care what your spouse thought or you were trying to put out other fires at the time.

“I did it/didn’t do it,” I told Jill once, “not because I don’t care what you think, but because my autistic son was doing something at the time that I had to pay attention to.” What she and I fight, without break, is the inclination to snap at the person who will give us some response: me or Jill, and not Alex. Alex who will react eventually, but not as fast as the spouse will.

Jill and I had a row like that the other night. I did/didn’t do something, and she snapped, thinking I just didn’t care. “Don’t yell at me for something Alex was responsible for,” I said. “We can’t make it if you do that.”

It’s three days later now. For the life of me, I can’t remember now exactly what the problem was.

***

The Autistic Family Life Cycle: Family Stress and Divorce, from a past ASA conference.

Autistic Children and the Strain on the Marriage.

Early on Father’s Day Alex held up his hand toward the top of the bookcase and kept saying “Airplane? Airplane?” He wanted the plastic model kits I keep up there, since my current apartment is a lifetime removed from the private basement bedroom I had in in high school, with its permanent card table splashed with enamel and covered with plastic parts of models under construction.

Image: upload.wikimedia.org

I’ve stored boxes up there of models the boys and I have built. Some months ago, I began buying plastic models, mostly planes, for the boys and me to do together. (I’m not the most experienced parent in the world, but I do think that if you’re going to try to ensnare your sons in one of your retrospective hobbies, you’d better get to it before they’re 16.) For Alex I’ve bought simpler kits, snap-togethers of jets, and one tiny snap-together Fokker Triplane. It was wicked cool!

“Alex, you want to build an airplane?” I asked him. “Airplane?” I had a few things to do but am always up for a 1/48th scale fighter plane, so I pulled down the box containing the parts of the Corsair I figured would be done by now in my unemployment, and the empty box of the snap-tight Spitfire the boys and I did a while ago. Alex opened the Spitfire box, and his face seemed to fall at seeing it empty.

“Alex, you want to build a plane?”

“Build a plane?” This caught me a little by surprise. I was missing a lot of chances here as a dad of a child with autism, most notably the chance to get him to speak and write a full sentence motivated by a deep desire to do something at that moment. He grabbed my still-unbuilt Unemployment Corsair and twisted a fuselage half off the running. “Oh, Alex, wait!” Every chance he could break it that way. But of course that’s what I bought all these models for: not display, but to play with. The Spitfire is all busted up in their toybox right now, and that’s great.

My mind was just running toward the glue and the paints when Alex wandered away. He’ll be back. I’m hope I’m more ready when he is.

***

Tips for activities for and with children with autism.

Parents struggle with the costs of their children’s autism treatments.

Sometimes it seems like Alex’s most obvious characteristic — or maybe it’s autism’s most obvious characteristic — is lack of focus. When he was just three or so, a neighbor watched him careen around her apartment examining things and wandering around without stopping. “My, he’s BUSY!” she observed. At the time I thought it was positive: he’s doing things, I thought, thinking about things, looking at things.

Photo courtesy of JunCTionS (flickr.com)

But he’s 11 now, and when the rest of us are sitting around watching a movie or eating dinner, Alex is still busy. Still wandering. Standing up in front of the TV blocking our view. Restlessly picking up toys and putting them down and looking for other toys.

I searched photos that were tagged “restless” or “restlessness” but decided on “unfocused” as the adjective that often describes Alex’s engagment with the world. Other times, he is SO focused, so engaged we watch, proud and admiring his ability to look through a book or form Scrabble letters into words.

Alex brought home the T shirt the other day, the shirt that his school issues every June. He goes to a special-needs fifth grade — “will have gone to a special-needs fifth grade” by a week from now — that sits in a school of typically developing kids.  All the graduates get their names on the back of the T shirt. Two of the names from Alex’s class this June, and one of the names is his.

Image: msg.mercyhurst.edu

I don’t know how to feel about these graduations, which this year even came with a school photo of him in a cap and gown. Nothing amiss with that, of course, except that the background of the photo was shelves and shelves of what appear to be law texts. By sixth grade, I’m afraid we have to admit the truth about law texts in Alex’s future.

This will be Alex’s fourth in his 11 years, and I believe if he were typically developing and not autistic he’d probably have gone through just as many. But for him and his classmates, they feel to me anyway a little too much like play, the backgrounds more like cartoons and the cap and gown more like a costume than it does for others. I do feel, on the other hand, that he’s truly graduating into a new breed of schooling next year, when he enters middle school.

On a morning this week — “9 a.m. sharp; this ticket admits two to the ceremony” – Alex will appear small and far away from my seat in the audience. He’ll be holding someone’s hand on his way down the aisle. He probably won’t march in time like the other students — the song always struck me as a bit of dirge, anyway — and he’ll probably be looking around more than the others. I hope he sits through this ceremony. The ones for preschool he wanted little to do with. He kept bolting to us in the audience, then at last ran outside to play. I hope he sits this time. It’ll feel more like progress.

Say you want to go up against your school district to ensure a fair and appropriate education for your child who has a disability. The school isn’t providing related services such as speech or physical therapy listed on the IEP (individualized education program). Or your child isn’t receiving modifications and adaptations for testing, or specially designed instruction. There are lots of reasons a parent might file an IDEA lawsuit.

Photo courtesy of methTICALman (flickr.com)

Now say you have to pay for expert witness testimony during a court hearing in order to make your case. Before the 2006 Supreme Court decision, Arlington vs. Murphy, you could recover those fees if you prevailed as part of your costs. But the 6-3 pro-school district decision said, in part, that the term “costs” does not include expert fees. (Read more analysis here.)

As the National Autism Association points out, school districts can pay these expenses using taxpayer dollars while many parents can’t hope to match those resources.  A copy of the bill can be found at www.congress.gov, in the box that says Search Bill Summary and Status by typing “IDEA Fairness”  and then clicking on search.  This will take you to H.R. 2740.

Now click here to sign a petition in support of the bill. Because it’s hard enough having to go to court to fight for your child’s right to an appropriate education. You shouldn’t have to go broke doing so — or decide you can’t afford to go to court in the first place.

Jill brings up a good point. I sure don’t envy parents of typically developing kids who have food issues — ingesting too much or too little — but I do think Alex should be left out of such debates (I do envy parents who have autistic kids who ingest too much food — I know that’s a nightmare too and I know I shouldn’t envy them but I do, because the crabgrass is always greener).

Photo courtesy of Shawnzam (flickr.com)

Alex’s first food came from a can that had been sealed by a chemical company, so right from his birth we weren’t picky about what he ate.  Alex was, however.  I remember sitting in front of his high chair and running through the Cheerios, Gerbers spiked with cream and maple syrup, strips of crisp bacon: we were at that time in a race to free him from his feeding tube, and any weight from anywhere was a blessing.  Most of that weight came from the floor, where Alex would cast even the bacon (”What’s that? Is it new? No!” or “Get it off my tongue! It’s a serpent from Hell! Serpent from Hell! Get it off my tongue!”).  After Ned, I can see this wasn’t normal.

Eventually we dumped the feeding tube — a near-run decision on the part of the doctor, who figured that the thing was probably hindering as much as it was helping at that time — and moved onto food. Jill was first to realize that moving onto real food for a little New York boy meant moving onto restaurants. “Guess who just ate bacon in a coffee shop?” she asked me on the phone one afternoon. She said his eyes got real big. And why shouldn’t they have?

Every feeding milestone with Alex has been a moment of moments. White rice. A brownie. V-8 juice. Yogurt. Hot dogs. A single strawberry. He turned 11 over the weekend, and he weighs about 55 pounds. I begin to wonder just how much bigger he’s ever going to get.

I guess I’d raise my eyebrows at a doughnut issued in gym class (where was this gym teacher when I was in 10th grade??). But what’s right for one person’s fork isn’t right for the forks of all, and that seems to be what food’s relation to Alex and his autism is all about.

***

Autism, food, and eating, from Neurodiversity.

Tips on tackling selective eating associated with ASD.

When I woke up this morning, I’d never heard of MeMe Roth. Now, at almost 3 in the afternoon, I feel drained and exhausted, having spent most of my day thinking about her.

The NY Times ran a story about her ongoing squabble with her children’s New York City public school, where other parents often send in cupcakes to celebrate their kids’ birthdays. Wrong, all wrong, feels Roth. Childhood obesity is on the rise, we’re a nation paying way too much for weight-related diseases, blah blah blah.

Yes, I know these are serious problems and we should all Do Something about it. But leave Alex out of the cupcake wars, please. Last week, for his birthday, I made chocolate cupcakes. I left some unfrosted… and he ate them. This was a big moment for us. I started out telling him it was a brownie, and I don’t think he quite fell for that, but by the time he was halfway through one, it was too late. He was enjoying it!

Since that night he’s eaten homemade coffeecake with chocolate chips and a huge hunk of chocolate mousse cake from the IKEA cafeteria, capping off a sumptuous feast of chicken fingers (he ignored the french fries). And this was a pleasure for us to watch.

Alex’s world is a small one. While Ned’s world gets bigger every year, Alex’s has stayed more or less the same size. He didn’t ask why there were no friends at his birthday. He’s enjoyed the MP3 player we gave him but he hasn’t demanded we put special songs of his own choosing on it.

One of the ways he can experience more variety is food. His palate is limited, and the list of things he doesn’t eat is much longer than the list of things he does. So anything he adds — anything – is a plus. If there’s a neurologic component to enjoying food and being willing to try new ones, I say bring on the cupcakes, the french fries, the cheeseburger. If my son isn’t going to have the kind of life other kids have, at least let him have some of the pleasures of childhood.

Alex would soon smile at the songs (flagship: theme from the cartoon “Arthur”) on the MP3 player from me, and would explore the picnic basket from Jill, and give surprisingly passing notice to the huge Elmo card from both of us (Ned had handmade Alex a card earlier in the day). But, the closing of Alex’s birthday weekend reminded me yet again that my inspirations for decoration, like most of my ideas that last, come from nowhere.

Birthday chocolate chip cookies. Image: Jill Cornfield

Yesterday, Jill and I too tired to head out at 6 p.m. and buck the crowds leaving a Fifth Avenue parade, decided to do birthday brownies for Alex. Then Jill got the lightning bolt to serve, instead of brownies, birthday chocolate chip cookies! Some ideas are just right the instant you hear them. My bolt came on the presentation. Jill had a pile of cookies in mind, but I took the 11 cookies and arranged them on a plate, a candle in each.

When the lights went down, Alex looked over at me as I vanished into the kitchen. Jill went out to start the song. Alex ran to the couch and pulled a blanket over his head. When I emerged with the cookies and candles and the song started, he giggled and giggled and stayed for a moment in one corner of the room. It’s hard to remember sometimes that Alex can be shy.

Least he didn’t cry at “Happy Birthday,” like on his, I think, fourth birthday. We also spent the day reviving some of Alex’s classic sayings from what had suddenly become a large number of years past. “Pingles” for Pringles, “Boogles” for Bugles snacks, “Lo-Lo” for granola bars, “Palmmutty” for Pirate Booty. Alex smiled when we mentioned them. A little surprising to me was that he didn’t then pester us to give him Pringles, Bugles, or granola bars.

One candle drooped, probably not for the last time on Alex’s birthdays now that he needs a dozen or more. So number 11 faded behind, like something on the shore when you’re drifting down the river. “Know what’s funny about these cookies?” Ned said through a mouthful of crumbs. “They don’t taste like candles!”