Ned and I went to Grandpa’s for the 4th of July. Jeff and Alex went to the Bronx Zoo. Ned and I had sparklers, fireworks, barbecue. Alex had hot dogs and played with toy animals.

I had a break from autism. Jeff had about 30 hours of  autism (except when he was sleeping — luckily Alex slept through the night, too).

Photo courtesy of JunCTionS (flickr.com)

So this puts us at something of a marital disadvantage this evening, when I’m tired and feel like kicking back, but he’s been working (really - it is a kind of job, coping with Alex except for a couple of breaks). It’s the boys’ bedtime; he feels snappish and put-upon; I feel like I’m back in a newsroom, where you get the time off, but not the work: if you take time off, you simply pay for it when you get back.

This morning, Alex and I were preparing for a day at the Bronx Zoo. “Alex,” I said, “bring your animals. Bring all of them.” Into the backpack tumbled the detailed plastic zebra, gorilla, giraffe, lions (male and female), and tiger.

These hard plastic figures about four or five inches long or tall (except the giraffe), with detailed painted faces and molded texture. Alex has all the animals mentioned above, plus a butterfly, a couple of chickens, assorted less-detailed barnyard critters from cheaper sets, and elephants in three sizes (and three different moods, judging from the open roaring mouths and raging tusks). Sometimes the makers of these toys will sell the same animal in several poses; you can, for instance, buy a cougar merely walking or a cougar with one paw raised and claws extended. They go for about $8 a pop.

Alex almost got the cougar a few weeks ago in a hobby store, except on the way to the registers he ripped off the tag and anyway he’d gotten a giraffe or something just a day before. “Bear? Bear?” Alex kept calling the cougar. We would correct him. “Bear? Bear?” he’d say again.

Alex has had buying jags before (no, now that you mention it: jaguars has never been one of the animals he buys). Books in bookstores, chocolate bars in grocery stores. He’s also had jags of lining up the stuff he buys, such as Scrabble letters. Once he lined up the Scrabble letters to spell “L-I-Q-U-O-R-S”, and another time he lined them up to spell “B-R-O-N-X Z-O-O.”

“Alex, bring your animals! Bring them all!”

I figured, what a chance! Hold the realistic plastic animal up to the glass and see the real thing right behind it! Don’t tell me I’m not a good autism dad!

It didn’t, however, ignite as I thought it might. He liked Tiger Mountain — amazing how BIG those cats are — but the gorillas and the elephants and the giraffes weren’t nearly as interesting to Alex as the “Paper! Paper!” he kept wanting. Turns out this was a zoo map, as I learned when we passed an information booth.

So how deep does Alex’s animal attraction run? He did select only the plastic tiger from his backpack to hold with the map on the subway ride home. And in the coffee shop, he insisted on every animal on the table, with the map, over his chicken fingers. How deep does Alex’s animal attraction run? Who can say, as usual?

* *  *

Toys for children with autism, from Autism Behavior Strategies.

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.

CareGiver360 was created by Ken Ziel, a Colorado father whose son has a range of developmental and physical disabilities. Ziel was inspired to create CareGiver360 from his experiences raising a son with an array of special needs and trying to communicate all of those needs to multiple care providers.

“When providers left or new providers came in, I could see that the process of being brought up to speed and adapting to new procedures was just as hard on the caregivers as it was on me and (my son) Austin,” Ziel said.

Caregivers can also use the tool to streamline updates in care procedures, treatments and conditions.

CareGiver360 creates “care guides” tailored to the unique needs of those receiving long-term care, and streamlines and safeguards critical information to caregivers. Families are able to share a record of a loved one’s care, condition and personal preferences. New care providers can use the guide to become familiar with their care recipient.

The idea came one evening after Ziel and his wife left Austin with a caregiver to go see a movie. “The amount of time it took to go over all of Austin’s care instructions with the caregiver, and the anxiety it caused my wife and me, was incredible,” Ziel says.

***

The National Autism Association provides relationship-coaching tools at no charge to qualifying couples who have a child with autism.  Couples in need will receive a book and DVD presentation at no charge. To qualify, couples that have a child with autism should write to lori@nationalautism.org outlining their special circumstance. Qualifying couples will then receive both the book and DVD in the mail. Lifetime partners that have a child with autism also qualify. Counseling funds are also available through Family First. To apply for a $500 grant towards marriage counseling, couples can visit www.nationalautismassociation.org/familyfirst.php.

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.

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.

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.

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!”