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.

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!”

Alex’s birthday is coming up, so that means errands. Friday we’ll probably take some cupcakes and treat bags for his classmates. We nearly always go for a red-white-blue theme since his birthday is Flag Day. I like to take a bunch of little toys and put them in the middle of a bandana, which I tie with some curling ribbon. I’ll probably use cake mix and homemade frosting for cupcakes, and somewhere I think we have some tiny flags on toothpicks to stick in them. 

Photo by Acidcookie (flickr.com)

The hardest thing is presents. What does Alex want? He loves things that a 4-year-old would love. Is there a way to get him to play with things that are more age-appropriate? Sometimes the fun of birthday shopping for Alex can be absorbed into a larger anxiety project of things we should have done: get him to play board games and understand simple card games. Too bad Candy Land isn’t Hot Dog and Pretzel Land. Might have more appeal for a boy who doesn’t like gum drops and candy canes.

My family is gathering to celebrate next Saturday, and nobody really knows what to get him. And that includes us. Here’s my tentative, maybe-something-will-excite-him list.

1. Jar of plastic beads (would love to see him beading quietly with Ned while we listen to music or just enjoy the relative silence)

2. Picnic basket (if he has his own, and packs it himself, will he want to go on a picnic and not bolt?)

3. Paint (the boys can paint together and we’re out of most colors)

4. Detailed toy animals (Alex loves these - but what does he really do with them?)

5. Deck of Old Maid cards? If a 4-year-old can play that, Alex probably could. I know he’d like the pictures and the matching aspect; would he get the whole you-me, waiting-your-turn part?

6. Little toy vehicles (see No. 4)

7. Beanbag? Hammock? Tunnel? Searching for “gifts for autistic kids” led me to a site (one of many) that suggests gifts that tie into certain behaviors. Alex has been rocking back and forth lately - maybe one of these would be fun for him.

8. Balance board (found this on another gifts list - Ned agrees it would be fun for Alex. “And me too,” he points out.)

I’d decided to drive the family to Providence to see my old college advisor and his wife. I hadn’t laid eyes on them in more than a quarter century, and they’d never met Alex. They knew about him from my books, and I remembered them as terribly sweet and supportive people, but they’d never met him and for brunch all I knew was that we were going to be eating in some place nice enough to need reservations.

My advisor and his wife escorted us to a dining room of sparkling glasses and white tablecloths and napkins. Therein were our reservations at a round table; I quickly and silently calculated that we could get the back of Alex’s chair no closer to the wall than about four feet.

“I’ve seated Alex between you and me,” I said to Jill when she walked in.

We had our tools: one of our hosts had supplied a box of fancy European cookies, I grabbed a handful of Saltines off the soup tray, and we had a small box of backup, good ol’ American Chips Ahoy. Plus we promised Alex to order bacon so he’d stay in his seat and leave the light switches of the dining room alone.

Brunching with us was a retired researcher of one of New England’s major autism-research centers. He watched me try to make sure Alex remained with us at the dining table (which Alex largely did through a grown-up meal: pretty impressive…).  “You seem to have developed a sixth sense about him,” the researcher said.

Except when Alex bolted into the other part of the dining room and got to the light switches. Jill brought him back. The researcher — who’s read and I think liked my stories about Alex — noticed that Alex had built toward that bolt, first leaning away from me then leaning away from Jill, then scooting. It helps to have another set of eyes on Alex.

And arms, as my old advisor reached out gently a few moments later and snagged Alex as he made another attempt toward the switches near meal’s end. More fool Alex: As Alex’s empty bacon plate was cleared, our hosts soon had the waiter bring him a dish of devastating chocolate-chunk cookies. That took care of him for the rest of the meal. When he was done, Alex wiped his mouth and fingers on a real cloth napkin.

***

An illustrated PDF about teaching table manners to a young boy with autism.

Image: SXC.HU, Tinneketin

Alex has the video Elmo Cooking. Despite my sometime desire that this be about shrill Elmo in an oven (ha ha), it is instead about Elmo learning to cook from various kitchen notables. One of them is Emeril, who cooks pizza with Elmo. “BAM!” Emeril says as he slaps on olives. “BAM!” echoes Elmo, adding peppers.

So it isn’t surprising that Alex likes to help with our homemade pizza. We made about a dozen of them for guests one Christmas, and Alex never left the kitchen, bamming pepperoni, peppers, mushrooms. A good shot, too.

Pizza

Last night he wanted to help with all steps, perhaps because he’d just come off ripping an “Erase the R Word” button off the bag I take to work, shoved a stack of newspapers off the dining room table, and in general misbehaved like what I termed “some alien life form” (I snuck out of work to see Star Trek yesterday afternoon…) Alex likes to help after being naughty. Much as I like to think it’s his way of apologizing, I think he hopes we’ll be so pleased we’ll just forget his bad behavior of a few moments before. Same thing, really.

Last night, he wanted to handle the dough. I should’ve let him, except I was in a hurry to get the pizza into the oven so Jill could get out the door to a meeting. “Not tonight, Alex. Sorry.”

“Dough! Dough!”

I got the stuff pressed down and he handed me the sauce jar. I spread it out, letting him handle the fork a little (only rookies use a spoon…). Then came his favorite part: cheese. I let him bam a little; he tends to drop it in one big mound in the center of the pie, so we worked on sprinkling.

“Alex, clear! I’m opening the oven!”

“Pepperoni?” he asked.

Someday I’ll report that he actually ate a slice of homemade pizza. (He used to eat the cheese off slices in pizzerias, leaving me to finish what amounted to a warm ketchup sandwich.) He did stick his finger on a drop of sauce on the counter and place his fingertip in his mouth. “Alex - sauce!”

A new food? A new era?? His lips twisted into a sour rectangle, and he ran back to the living room. Later he had his hot dogs. We must bam more.

***

The Autism Treatment Acceleration Act has hit the House and Senate.

Our Mother’s Day picnic breakfast went pretty well. We have a new basket that I thought would be too big and bulky, but it’s fine. Alex ran away a couple of time (even leaving the area a couple of times) but he seemed to have a good time. We brought a bat and some balls, and he was interested in playing with them on and off. Only trouble was, he really didn’t want to sit with us. And, stupid us, we forgot to bring some kind of picnic dishes. Alex likes having his crackers on some kind of plate. He thought the Frisbee would make a fine plate; I suggested a container lid, and he was OK with that.

Not too big, not too small

I’ve begun to think we should get Alex his own picnic basket.  After all, he learned to eat hot dogs by playing with a little toy hot dog. Eventually, he took an actual bite and found that hot dogs are in fact edible. I think he’d love to help pack his own basket, and I think (or I hope) that it might make him more interested in picnic food and want to sit with us. I asked Ned if he thought Alex would like his own picnic basket, and he said, “You know, I’d kind of like my own picnic basket, too.” I asked what he’d put in it. “I’d put my food in it. But, Alex and I could share a basket.”

As usual, I’m going overboard and getting two. One is just a basket, but the most perfectly sized basket for a boy to carry. For Alex’s birthday, I’m thinking of getting him a picnic basket set. It might be a little frou-frou; it might be a little under-sized. But I think the dishes will help him realize a picnic is about eating and community. Besides, I find those polka dot cups irresistible. I’m sure he will, too.

Sometimes Jill says she’s the worst mother in the world. Other times she simply says she’s the worst mother in the world for an autistic child.

She yells. Her Times is splayed all over the dining room table, and that probably does nothing to maintain Alex’s sense of order. Yes, Jill may be right, but only at terribly rare moments. Her average as an outstanding parent in both categories is at least as good as mine, and in fact a lot better. She’s the one who picks them up from the bus, sits through Ned’s trumpet lessons and signed him up for youth soccer, and she’s the one remembering to get only the strawberry yogurt, the Hebrew National hot dogs, and the Utz Extra Dark Pretzels for Alex.

She has a number of greatest hits as a mom:

Alex’s toilet training: One day long ago Jill just said to herself, “It’s time!” Maybe Alex had tried to weedle another diaper out of her, maybe she just looked at him there getting taller in the living room and figured she was going to take a shot. And she did. She sat him down and in the course of about 48 hours, at most, introduced Alex to the proper uses of that special piece of furniture in that special room. Every time I squeeze into some postage-stamp men’s room in some Manhattan coffee shop, I think of the job Jill did with this.

Knitting: She started by teaching a few mornings a week in Ned’s classroom. She loved it and the kids loved her, so she took the project to Alex’s classroom. Though, she says, he rarely pays much attention during knitting, but he loves making little letters out of plastic and yarn.

Restaurants: I’ve always been a little jealous of Jill, since she was in the booth years ago to see the moment Alex’s eyes went wide at his first taste of bacon. Since then, she’s taken the lead in getting us into restaurants — coffeeshops, Chinese and Vietnamese joints where he often now spoons at the rice — and she did it for the most sensible of reasons. “Because sitting down and eating in a restuarant is just something a family ought to be able to do.”

Appointments: Jill tracks them all, from doctors and field trips to zoos and cathedrals, to classroom visits to Ihop. She rarely misses one. She’ll tell you this is because she isn’t working right now, but soon I won’t be working either and I bet my average won’t be as good as hers. She can do it because she’s smart and organized despite our dining room table, and because she’s the best lady all three of her guys could hope for. We’re going on a picnic.

Image: Torontoroses.com

Rustic basket brimming with delicious food, shady spot in the park, small boy running away. If you guessed Stimpson family picnic, you win!  To my mind there is no better way to spend a few hours on a summer afternoon than sprawling in some shady spot (with a bit of sun, but not too much sun) eating deviled eggs and Italian sandwiches.

A few years ago I started propelling my family toward this activity and quickly ran into a couple of autism barriers. First, bolting. While we’re sprawling and and eating, Alex is running away. Second, food. We like sandwiches, deviled eggs, fresh fruit, chocolate cake. Alex likes crackers.

We had one near-great picnic at a spot in Central Park that had a little hill. We watched carefully while Alex ran toward the hill, ran up it and then came back. He did this over and over again, so we stopped feeling quite so anxious. Wide-open spaces don’t suit him as well. It’s as if he wants a barrier or landmark that tells him when and where to stop and return to us.

For a couple of years we went to another spot near the Conservatory Garden that was partly fenced in, but that area is now under construction. So I guess any day now (when the weather decides to go about 45 degrees) we’ll be looking for a new spot.

Like most things, my dream of the perfect family picnic is not insurmountable. I think it will take preparation and talking to Alex before we do it. Just like our seder (”it’s an important night, and we need you to act a certain way”) my ideal picnic can happen. We used to buy Saltines for Alex because he adores them and we almost never buy them, so that’s a good thing to bring on a picnic. Sometimes he eats watermelon, so it’s possible we can all enjoy the same thing. A couple of books might be helpful so he can read, and a favorite toy (or a new toy) might make sitting with us a more attractive activity.

I’ll let you know - ideas welcome!