Additional responses to “What’s the one thing you’d like to say to your relatives about your autistic child?”:

“Just love him and enjoy him.  Let me worry about the rest.”

“Thank you for loving him and treating him like the beautiful blessing that he is. We’re blessed and lucky to have family that ‘gets it’!”

Photo by Me-Liss-A (flickr.com)

“Sometimes (my wife and I) need your help watching him so we can spend some time on ‘us’.”

“How we live for the ‘us’ moments, and have learned not to feel guilty about it. If only our loved ones could understand.”

“Please don’t look at him for what he is not, but rather for what he is.  There is not one day that goes by that he does not amaze me, I wish you could see and understand the same.”

“Recognize some of the exact same ‘quirks’ in yourself.”

“Thank you for loving him and recognizing his gifts. Understand that spending time with him is all he really needs.”

And in response to the question, “What’s the smartest thing anyone ever said to you about your autistic child?”:

“He is charming and intelligent beyond his years”; “He is a tutor in his math class”; “Quite frankly, he is refreshing compared to the rest of the kids (in middle school)”;”We love him here at school and we will miss him.”

Thanks as always to everybody over on the LinkedIn boards.

* * *

“Autism Parents’ Plea: Understand Kids’ Meltdowns,” from CNN.

IQ testing for children with autism, from about.com.

Image world-war-2-airplane-model.com

The 1/48th Corsair fighter plane was going to be my comeback piece, the plastic model kit (”hobby kit,” now that I’m almost 50 and can afford the good kids) to prove that my eyes were as sharp and my hands as steady as when I was 16 and building the bargain kits.
I put it right up on top of the bookshelf, out of the way, with the now-empty boxes of the snap-together airplanes I did with the boys. “Airplane? Airplane?” Alex kept saying.

I had some computer work in the afternoon while Ned built a model on his own, and as I’m making dinner now that pretty took us to about 7:30, when the dishes were put away and I decided that Alex was owed some airplane time.

He didn’t help so much as watch: I felt a warmth to think that for Alex it enough just to be near me as we built a model airplane together. I do hope he wasn’t paying too much attention, after under my once-skilled fingers one piece went on crooked and then another went on slanted and then the tiny cockpit tinkled out of the half-finished fuselage and bounced across our floor.

Somewhere about the moment the Corsair’s canopy received a giant impression of my thumbprint in glue, it began to hit me that whatever skill I’d once had in this hobby had deterioriated. In the chair beside me, Alex drew his knees up inside his T shirt and sometimes watched me, sometimes stared off as I smeared glue along the inside of one wing and then the inside of another and mashed the two halves together. “Alex, wanna hold this together for a minute?”

He did. He slipped the propeller onto the front of the plane — right in front of the complete hash I’d made of the cowling assembly — and he took a tissue gently in his fingers to dab at the decals. I bent one of the “U.S. NAVY”s upon itself and I couldn’t line up the American stars on the wings (decals are my favorite part of building; they make the model).

I really meant to give this kit more love than this. Somewhere along this time, I decided to just do the landing gear and the missiles later, and just stick the damned wings on the damned plane — the part of the construction Alex seemed most keen on, anyway.

“There, Alex. Airplane. Let it dry a minute.”

He did. Then he took it over to the couch and methodically, wordlessly stripped off all the decals.

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.

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.

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!”

I call that a pretty good birthday. We were lucky to be able to snag the little gazebo in the 67th St. playground in Central Park. Our decorations (bandanas and a big red-white-and-blue thing) looked really festive. Our picnic basket got a great workout ferrying cupcakes and pink lemonade and napkins. Coincidentally, Ned was wearing an Old Navy flag t-shirt. Jeff was wearing a navy-and-white batik shirt. Alex chose a red, white and blue-striped t-shirt.

Alex's birthday is also Flag Day

Grandpa gave the hit present: a boxed set of twenty (count ‘em, 20!) Matchbox cars. Alex played with them and was completely mesmerized.

Aunt Julie gave inspired gifts: a green plastic wire thingy that’s hard to describe, easy to love. It’s intriguing, and I showed Alex how great his jungle animals look if you put them in there. Also these open-ended puzzle pieces. Alex, Ned and I had a pleasant half-hour this morning playing with them at the dining room table.

We're glad Flag Day is so near the 4th of July.

This morning, Ned gave Alex a detailed, realistic-looking toy elephant that he (Alex) had expressed interest in on a trip to the toy store yesterday. He was so delighted with it that he actually took an older elephant and tossed it in our recycling area. (I felt sad for it, so I rescued it and put it aside for our yard sale.)

Every year since Alex’s birth, Jeff has written him a letter. I guess this year my own rituals for Alex’s birthday are starting to emerge: A simple party. Cupcakes, pink lemonade. We spin out the presents (we still haven’t give him his MP3 player, which I loaded with songs I think he’ll like, or the picnic basket) so he doesn’t get overwhelmed. Every year we push him to celebrate a little more; every year we look back on the day of his birth and remind ourselves how far we’ve all come.

Photo by Me-Liss-A (flickr.com)

Replies continue to come in on the question posted on another forum, “If you could say one thing to your relatives about your autistic child, what would it be?”

“Have empathy,” said one respondent. “”He’s still family. Don’t forget he exists,” said another. And still another: “Open your eyes!”

“Do not be afraid,” one reply said. “Do not feel sorry for us or our child. He is the greatest gift/blessing we could ever have in our lives. We are happy we were chosen to care for this person.”

“My wonderful Aspie is now 16 years old, and we have overcome so many hurdles,” one respondent said. “If I
could turn back to yesterday, these are some of the things that I would have said: ‘It is not my lack of discipline that has made him this way and I don’t appreciate being told that is it poor parenting.’ ‘It’s okay that you didn’t invite me to family get togethers because my child is too high-strung. Someday when he is older you will regret your decision to exclude us all those times’ (and they did regret!). ‘Yes, I have to remind him to say “thank you” when you give him something. It’s not that he is spoiled, rude, or ungrateful. It’s just that sometimes he forgets our social standards.’ I couldn’t stop at just one comment either!”

With an eye to celebrities and debate: “Please stop judging our love for our child based on our (un)willingness to try every anecdotal therapy you hear about from Jenny McCarthy or Oprah.”

“Love him because he’s different,” said another. “He’s no one to fear and deserves the same love and respect as his siblings.”

I’ve always liked to think people liked me because I was different.

***

Autism Speaks Family Services has released its Autism Safety Project, which provides first responders with information and guidelines for communicating with individuals with autism in emergency situations.

It’s still unclear to me exactly when I realized Alex wasn’t going to stop running before he entered the street. For months and months he’s been excellent about this trick of survival in the streets of Manhattan, running running running right up the edge of the curb, then halting and holding out his hand for me to take when we cross the street.

Image: Sonja's 07 photostream, Flickr.com

This time, no. He sideslipped the police barricade and weaved right out into the middle of the intersection of 5th Avenue and East 96th Street. Cars were turning onto Fifth out of Central Park. Alex was laughing and laughing while while we screamed his name behind him. The wind on his cheek must’ve felt like the freedom of being a big grown-up boy until the arms of the traffic cop cocooned him.

“Sorry, officer,” I mumbled, snagging his arm. What else could I say? The guy had to get back to his turning traffic.

“We - are - going - HOME!” I snapped to Jill, Ned, and especially Alex. Jill and Ned continued on their way down Fifth Avenue while Alex and I walked home — fast and dad-mad. “You did something bad!” I kept saying. “You do NOT EVER do that!!”

“Something bad,” Alex kept repeating. “Something bad. Something bad. Bite.” He pretended to bite his arm. I’ve found the best response to this is to pretend to bite my own arm, and showing him how silly it looks. This often works; figuring out that it works took a bit of time and a bit of knowing Alex.

So does explaining why he suddenly ran into the street. For 10 blocks we’d been walking down the center of Fifth Avenue, which was closed to traffic for an early-evening festival on Museum Mile. So Alex, who knows full well you don’t walk down the middle of the street normally, had been doing so with great enjoyment — running circles, literally, around Jill at one point — and perhaps he saw no clear reason this freedom should just end at E. 96th Street. At that street, police had erected barriers across Fifth Avenue to control pedestrian traffic. But I have never thought to teach Alex what police barriers mean.

Perhaps I was too far back, perhaps I was careless. Perhaps we all were, forgetting for just one second that Alex, often sensible and willing to learn to obey, does not know all the meanings of all the possible warnings in this world.

“Did that cop say anything to you?” I asked Jill later, when she came home with Ned.

She looked at me. “What’s he gonna say?” she replied.

***

Virtual reality apps are helping autistic children learn about street safety.