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.

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.

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.

“Alex, get dressed!”

Thank God he can do this himself now. “Pants, socks, shoes, a T shirt!” I call in the morning, and he vanishes into his room. A moment or two later he re-emerges in khakis, a T, with a mismatched pair of striped socks and his brown slip-ons in his hand. A moment after that, and another nit-picky task of parenting has been taken off my hands.

Parenting — and I think parenting of the typically developing as well as parenting of the autistic — was always to me a matter of being plunged into more work than I could ever envision, and step by step, day by day, being relieved of the jobs one by one. Toilet training was one (and boy did we get lucky on that one, largely due to Jill’s efforts).  Tooth brushing has been another example: Alex will brush his teeth by himself now, and to us has fallen the fine points of Waterpikking and flossing.

Alex’s gumption has expanded to include some hold jobs, too. He’s terrific at scurrying to put away folded laundry of his, such as socks, pants, and underwear. He’s pretty good at holding up his end of the bucket brigade that is putting away groceries in our house, helping Ned unload the bags and handing the items for Jill to storage (I take a supervisory role at these moments; someone has to). I did always think Alex would also love loading the dishwasher, since it’s kind of a jigsaw puzzle, but that hasn’t ignited in him yet.

Dressing has joined these tasks, but others remain, with people’s exhibit A being making his bed.

A tough and tight layout in their bedroom, I admit, and even I with that Jill terms “your gorilla arms” sometimes have trouble reaching behind there and tucking the sheets in, but surely Alex could help spread the thing up. Ned has sort of started doing this, when prodded (and prodded, and prodded). Maybe yet again Alex can be taught to follow Ned’s lead.

***

Antidepressants offer no relief for repetitive behaviors in children with autism, at Medical News Today.

It’s 5 or so in the morning right now, and Alex has gotten me up with the sound of soft clattering in the living room. He’s digging through a box of plastic animals. Sometimes he wants to set them all up in rows, but often he just wants to dump them out on the floor to know they’re there. It works out good for me, too, as nothing wakes you up like driving the snout of a hard plastic big into the bottom of your foot at 5 in the morning.

Three lions ranging in length from two inches to six; an elephant and a turtle about the same size; three pigs, including one that oinks and whose eyes flash bright blue when you press the button on his belly; an inch-eye chicken; a two-inch-tall tabby cat; two cows; and the five-inch plastic Charlie Brown (probably what I’d play with if I got down there, and though I realize Charlie Brown isn’t an animal, he sounds the same hitting a hardwood floor).

Alex dumps these out at the north end of our coffee table. Sometimes he sets them up in rows, sorted by type and never ever just by color. Sometimes he walks around with them and trembles on the edge of real imaginative play. Mostly, however, he dumps them across the floor just to know they’re there. I get as keyed up as the next guy over material security and God knows I woke up many a morning a lifetime ago excited to mess around with some enticing new hunk of plastic. But I never needed my crap right in the center of the family’s living room.

We make him pick them up, of course, and he’s actually pretty okay about it, once you get him primed like a pump. A pointer works well, too, a little tap and point on the toy itself, and on his shoulder if he seems to be sitting and drifting (concentration is a thing with Alex these days, his teacher has noted). Once you get Alex going, clatter clatter clatter, into the box they go. And the second our backs are turned, out they come again. I know having everything out and often lined up is how autistic process information. I also know what a plastic snout feels like on the bottom of my bare foot.

“We need to trim the toys,” says Jill.

***

Tips for organizing your autistic child’s toys.

Operating on the principle that into every child’s life a little boredom must fall, Alex and I went shopping today. Why inflict such cruel punishment on my autistic son? It’s Memorial Day. Practically mandatory to hit a sale or two. Ned and Jeff were at the Intrepid for a morning of Fleet Week activities, starting with breakfast on the flight deck. I needed something to wear. Old Navy flag t-shirts were buy-one, get-one-free today.

Old Navy Flag t-shirt

To sweeten the deal, we planned to go to Borders if Alex was good. (That’s what I told him. We were going to go anyway. I just wasn’t counting on actually getting to try anything on.)

It actually went quite well. I repeated over and over again, “We’re going to a store where Mommy can try on some clothes. Then: bookstore!” Alex was a good and patient shopping companion. We stopped briefly in Crate and Barrel (on the way) and Pottery Barn (also on the way). We went to the clothing store. I looked for things to try on, headed for the escalator, and Alex started to balk. “No more!” he said. We went upstairs anyway. Picked out jeans and luxuriated in a perfectly sized dressing room with bench for Alex to sit on and read. After I’d tried everything on, he grabbed my sandals and handed them to me. As we left the store, he said, “Bookstore! Bookstore!” He was visibly thrilled.

Our bookstore visit was also a success. I mostly sat in an easy chair and read “Design Your Life: The Pleasures and Perils of Everyday Things,” which I think will make a great gift for my sister. Alex darted around some but stuck to the children’s area. He picked out three books he knows quite well and painstakingly peeled the sales stickers off. (I replaced them and told him we couldn’t do that.) Then it was time to leave. I wrested two  of the books away and told him we’d buy one. ONE. “Pick one,” I said. “Pick two!” he answered. Sadly, he ran away when I was at the cash register so I had to take off after him. We didn’t get the book, because running away is, I explained, a deal breaker. I’m pretty sure we have a duplicate copy at home anyway, and I’ll look for it later.

Our summer plan calls for water parks.

Image: Spakattack, flickr.com

We still don’t know how Alex will react to not going to day camp. Much more important than the cost of savings was that Alex has always seemed to enjoy few parts of camp. Camp theme days seemed to leave him cold. He’d often get out of the pool before swimming was over; he’d spend a lot of arts and crafts period running from light switch to light switch in the cabin; he seemed okay with concept of baseball, but always wanted to carry around the ball, bat, and glove (they are, after all, a set). The staff was great, the camp lush and lovely, and his shadowing counselor was, I think, his first crush. But all he ever seemed to like at camp was Flying Squirrel, a bungee-like contraption that bounced kids high in the air.

He seems to love school, however, and sped summer school in New York is a lot of play and recess anyway. Surely he’ll be okay with that (even though three years ago he cried on the first day of summer school)? I do wish we could ask him, but as usual with semi-verbal Alex it’s a matter of guesswork, watching sharply for clues, then probably getting it all wrong anyway.

He sits on the couch and silently flips through last summer’s camp scrapbook. “Summer school this year, Alex,” I say. “You’ll go to school and we’ll do stuff on the weekends.”

Coney Island’s water flume was always a favorite. Alex’s rec programs have also gone to water parks (so did day camp, occasionally). He would sit patiently in the front of the big log boat and wait for the heart stopping drop and tidal wave splash at ride’s end. A whole park of such rides should ease the pain of no Flying Squirrel.

Our plan calls also for zoos, beaches and seaports of Connecticut and Rhode Island, fire museums. Maybe we’ll even run him out to Sesame Place and watch his little mind be blown by a 6-foot Elmo.

“Alex, school this summer.”

“School,” he says, flipping the pages of the scrapbook.

***

See these options and tips for summer travel and vacations with people with autism.

I was speaking last night to the director of the new YAI Autism Center, for which I’ve written two blogs. “Beautifully written,” the good doctor said of them, so naturally I thought he was a pretty sharp guy.

“I’m curious to see how the blog will develop,” he continued. “It seems that often when a center like ours has a blog, it finds itself having to take some stand. I was wondering what your views are?”

Oh. In the whole cause-of-autism thing? Yes.

I have no stand.  I usually answer that better minds than mine are working on this. Premature birth? Vaccines? Phases of the moon? All are good candidates. I’ve read up on the vaccine/mercury versus non-vaccine/mercury debate, most recently in Autism’s False Prophets, and I haven’t settled on either side. I am certain, however, that something’s responsible for Alex still liking “Elmo” and “Dragon Tales” at nearly age 11.

So I dredged what I could recall from Alex’s vaccination schedule from back when Bill Clinton was still president and Godzilla was the hot summer movie, but honestly, when your first baby lives in a plastic box and you must leave him in a hospital night after night and you still have what will be a full year ahead of you of more of the same, the shot slate doesn’t stick in your mind — especially if it’ll be a long time before you realize that slate’s potential importance.

I do know what side I fall on in the debate: on the side of not believing you have a lock on the whole truth, and not on the side of making death threats to those who publicly oppose your views. The unending ability of people in a terrifying situation to fragment, takes your breath away.

The doctor talked to me about the latest research and I agreed it sounded promising, and I assured him that if he stumbled across a cure I’d be one of the first in line. But, last I leaned on the crutch of the Layman Parent Writer:

“My opinion,” I said, ”is that I fear for Alex’s adulthood.” That certainly seemed to be something we agreed on.

***

Visit YAI’s Autism Center Community here.

“Toddler Brain Difference Linked to Autism,” from CNN.

Researchers find first common autism gene, from Reuters.

(Image: taoism.about.com)

Just seconds after Jill announced from the bathroom that Alex could squeeze out the toothpaste by himself I hear her announce, “And we have bleeding gums!”

I’ve always been grateful for any toothbrushing that Alex did for himself. They taught him at school, and after an initial shakedown - he had to remember to brush the tops as well as the bottoms - at least it was another task he could handle by himself.

But bleeding gums? My gums bleed sometime during dental cleanings, but I’m 47. Alex is 10.

So now we turn to all those things they say you’re supposed to do and all of us feel guilty for not doing enough. Floss. A Waterpik on the low setting. Elemental teeth care, which in our case will be taught against the wall of sand that is autism.

“Ned,” I say, “listen…” I fill him in the bleeding gums, and point out that Alex will often do things if he sees Ned does them and they seem like fun. Ned agrees, and flies into using the Waterpik; first thing Ned does is spray the mirror.

We’re no strangers to questions about Alex’s dental care. His teeth are yellow (mine have been too, for decades, until White Strips came along). His upper gums seem swollen, his teeth just little buds in the pink. For a while we worried that he was grinding his permanent molars down to the gums, and we wondered if he needed caps.

For a few years we’ve been taking him to one of the few dental clinics available to special-needs kids in New York. Good place, except every time we went we found a new dentist waiting for us. All nice dentists, who all said Alex was a pretty good patient in the chair (when somebody screams, it’s easy to see their teeth…), and that no, he wasn’t grinding his teeth and yes, he did have a small cavity but it was in a baby tooth he’d likely soon lose anyway.

Bleeding gums. Alex watches Ned spray the mirror, standing there laughing with me sitting on the toilet and hugging him as if he were about three. Alex giggles into his hands, which he holds over his mouth. In the grocery store, I walk Alex by the toothpaste aisle, hoping to find Elmo Dental Floss (Do they make such a thing? They should.) “Alex, this is floss,” I say.

I think we can do this. My first Waterpikking with him goes well: He laughs as the gentle spray hits the swollen pink. I teach him to brush at 45 degrees. All the stuff we feel guilty about not doing. But there’s a world of difference between feeling guilty about not doing something for yourself and not doing it for Alex.

Primer on pediatric dental care for children with autism: http://dentalresource.org/topic55autistic.html

(Image: sxc.hu)

Reader Laura (the autismfromtheoutside blog) wrote in response to “Work It Out”: “What do you see in his future? Helping sorting in school cafeteria, hanging clothes as a local store, watering plants at a nursery.” She mentions these are jobs she’s seen students trained for, and they all sound pretty good to me for Alex. (Of course, I just got laid off, and they sound pretty good for me, too.)

I remember watching Alex in the isolette after his premature birth (21 ounces, 27 weeks’ G), watching him grip the breathing tube in his silent, tiny determination to some day pull it from his own throat — which he did, more than once, and sometimes before he was ready. Doing something before you’re ready has always been to me a sign of a good spirit. Alex’s, what should I call them?, internal resources have developed a lot over the past year: concentrating on homework, picking up around the house, remembering the precise location of some fun store he’s visited only once. Says Jill, “There’s not nothing going on in there.”

My problem is not what he can do, but what I’m afraid I can’t do. I watched Alex a few months ago, for instance, as he struggled to finish the tougher levels of an IQ test. He pieced together the puzzle smoothly when the solution called for using four and six pieces, for instance, but I could see his progress wind down like an old clock at the eight- and 12-piece levels. To be honest, I couldn’t have quickly done the 12-piecer, either.) Stalled, he looked away, but still he sat there. Then he looked back at the puzzle, touched a piece, looked away, sat in front of the damned puzzle with a look of defeat that probably felt as good in his throat as that air tube.
But here’s the thing: He realized he’d hit a wall, and didn’t like it. A big part of the workworld is like that, and an equally big part is moving on and up (tell me about it). Obviously he’ll do that puzzle someday. Somehow, as long as it never cuts into how much I believe in him, I think that my current fear buys him the ability to do that. It’s a cheap price to pay.
The NYC agency YAI has a new online autism community, and they let me do one of their first blogs. See it and their new community at http://www.yaiautismcommunity.org/blog/