I’m not the world’s biggest Thomas the Tank Engine fan. Too many things to buy. Too many accessories and pieces. Differently sized trains wouldn’t run on all the pieces of track. When Alex and Ned were younger we had some cute Thomas toys (the take-along roundhouse was a big hit with everyone, including me because it stored all its own pieces) but he didn’t seem to have real legs in our house. We put the track and engines away a couple of years ago, and there wasn’t a peep of protest.

Apparently, though, a lot of children with autism really like Thomas in part because the facial expressions are so easy to read.  (Here’s a gallery of the many faces of Thomas.)

Now an Australian profit has partnered with the smiley-faced engine to create a game whose mission is to help children on the spectrum recognize different facial expressions. The game is available to play on their website free of charge. We’ll see how Alex does and report back. I’m guessing he will be able to distinguish some emotions and perhaps not know what others mean.

Suddenly I find myself liking Thomas and that big, toy-dollar-grabbing company a whole lot more.

I like to think Alex is a little more normal — or, like everyone else, manipulative — than might first meet the eye. Most obviously, there are the exchanges that go like this:

“Crackers?”

“How about pretzels, Alex?”

“How about crackers?”

or

“Alex, we can buy one book today. One book.”

“Buy two books?”

Image (Paul Klee's "One Who Understands"): Ben Sullivan, Flickr.com

That’s just wheeling dealing; that’s just how everyone gets through the world, and it’ll be great to see develop, just like it would be in a “normal” kid, until it inconveniences me. I know he understands stuff, too, but just doesn’t let on he knows. Like it takes dynamite to wake him at 6 a.m. on a school morning, yet he pops up like a dawn sparrow on weekends. I used to think this was just autism making my life a twisted mess until it occured to me that somebody at Alex’s school must say to him “Have a good weekend — see you Monday!” on Friday afternoon. So he knows it’s Funday the next day, and he’s happy and eager to bounce up at a Marine Corps hour, just like any kid would be. It’s just that any kid might also tell you so.

But sometimes it does feel like yes, you’re driving in traffic with Alex, but instead of red, yellow and green, the streetlights are blue, pink, and brown.

Consider the street-crossing scene in Rain Man, where Raymond stops mid-way through the street because the walk signal changes from Walk to a blinking Don’t Walk. “No, Raymond/Alex,” I feel I could explain, “you cross when it says Walk and you can still cross when it says Don’t Walk but it’s blinking. You have to stop when it says Don’t Walk and it’s no longer blinking.”

“No longer blinking,” I’m sure Alex would say. You and I would reply “okay” to these instructions. Alex, I think, would repeat one or two key phrases from the instructions. I also think that soon he’d continue walking on the blinking Don’t Walk. From his perspective, the result would be the same. From my perspective, I wouldn’t be immediately sure — “no longer blinking” isn’t “okay” to my brain — that Alex understood.

That doesn’t mean Alex wouldn’t or doesn’t understand the world. It means I still don’t understand his.

This is the time of year when the weeks start speeding by. Coming up is our last Saturday of respite for Alex. School trips (St. John the Divine, the Bronx Zoo, IHOP) are coming fast and furious.

Ordinarily we get through it and know that in the fall it’ll all start up again. But Alex turns 11 in June, and the NYC Department of Ed. considers him a middle-school student as of September. Where will he go? We have no idea. His school, which goes up to age 21 and has multiple sites throughout Manhattan, has two middle-school programs. We visited one and thought it was OK, but it has no spots available.

photo courtesy of Bill Ward's Brickpile (flickr.com)

Ned goes to a school that houses five different programs — his elementary school, four small high schools and a special ed. middle school program. Could my sons possibly go to the same school building, if not the same school? Maybe. We called the Department of Ed. placement office and were told they have no seats, but that we should call our principal and ask her to reach out on our behalf. We did.

Then Jeff gave a talk and someone from the Department came up afterward to talk to him and tell him about a language-based program that might be good for Alex, so we’re looking at that too.

A few weeks ago, when we started thinking about the fall, we just assumed Alex would stay somewhere within his school, or perhaps try the program in Ned’s school. I liked them because last spring one of their teachers told me they expect their students to reach for college, when possible.

About the only thing I do know right now is that the day after Labor Day, a yellow school bus will pull up to our building and take Alex to school … somewhere in New York City.

I picked up some great homework tips after my talk earlier this week at the YAI Conference in New York, (my topic: “Educating the Educators,” or how teachers can work with special-needs parents):

- When writing, let the student use bright-colored paper, such as yellow, pink, or orange. It improves concentration.

- Also when writing, let the student listen to music they’re well familiar with “and have listened to a thousand times.” In Alex’s case, this would be anything from “Elmo.” Also, it  improves the concentration, apparently, and helps makes writing come more naturally and fluidly.

- For math, use props student is familiar with. I’ve tried clothespins and Lego blocks, but one Alabama teacher who sat in on my session said I should use candy or pieces of food Alex is especially familiar with. I have considered having him count Saltines and letting him eat them when he gets the math problem right. She suggested pieces of his dinnertime hot dog.

My session in general, was a great chance to meet other teachers and parents. They loved the story of how Alex fooled Jill one night when she’d taken him into the bathroom to lecture him about bad behavior. She was holding the door closed; he wanted to open the door and leave. So while she read him a riot act, he got all demure and coaxed her into singing a clapping song he’d learned in school. She figured, great, I’ll sing too, and when she moved her hands to clap along, he grabbed the knob, opened the door, and fled.

I also found Prof. Pat Levy’s session interesting. She teaches education at Manhattanville College in White Plains, N.Y., and was lecturing yesterday on how teachers should keep careful records of all parent/teacher conferences. Interesting to hear the other side…

YAI is also establishing an online resources center, including Web-based video.

***

FUNDING FOR THERAPIES: For Jake’s Sake is a 501(c)3 charitable corporation, created to raise money and provide the funding for children with autism to access effective therapies they otherwise could not afford.

(Image Credit: YAI)

Alex is entering 6th grade in the fall, and he will go to a new school.

It’s been six years since we toured special-needs schools. Back then, as Jill points out, we were looking for a kindergarten, and kindergarten classrooms for the autistic don’t differ much from kindergarten classrooms for the typically developing.

So this will be new. First stop was the school of Ron’s, Alex’s old terrific EI special-educator who’s now unit teacher of a special-needs site in a New York City public school.

I got to the meeting before Jill this morning; I rounded a corner and there Ron was. “There he is!” Ron said. A friend. He’s greyer (”More dignified,” I told him) but otherwise the same spark and firm handshake.

I did know  what to expect six years ago but now, I’m unsure what to look for in a school tours.  Here are the same tiled walls, same small bathrooms, same construction paper and marker artwork festooning the corridors.

Jill’s biggest jump start on this next-level search for Alex was a phrase she heard at another special-needs middle school. “We have,” the unit teacher of that school told her, “an expectation of college for our students.” We had never heard any educator say anything like that about Alex before, and it was like a strong new scent.

Still, with the budget crunch I foresaw late last year, I was hoping Alex’s current school could make an exception and perhaps keep him another year. Better to be with the people who’ve taken you from stop-and-stares to reciting “The Pledge of Allegiance” when the money dries up.

“Then Obama came through the funding,” Ron notes.

So it’s up we look. Suddenly I have to start from square one with people who’ve sometimes seen but not really met Alex, telling them all the clever cute stuff he does. How he tricked me out of the boys’ bedroom last night so he could get the cat off Ned’s bed. How he tricked Jill into taking her hand off a doorknob once, because he wanted to make a break for it. How he says clearly, “I want cookies!”

Ron’s school was similar to the one Alex is in now — some rocking, some stimming, wheelchairs parked in the halls. Classrooms had the velcro schedules (”sweeping”; “work time”; “clean up”), the looseleaf binders of simple sentences in big print. “Who wants to read me the recipe?” one teacher asked.

The classrooms were smaller. In one, colored cloth shaded the fluorescent overheads to cut down on distraction. In another, students used a computer to read and relate the life cycle of the butterfly. Science class. “That right, a chrysalis,” the teacher said. Ron shows us yet another loose leaf with a checklist of jobs the older students here perform at a local golf course: pick up trash, clean tables, stock storerooms.

We’re looking forward to Alex’s future. He could have one here.

“If there’s an opening,” Ron said.

(Great NY Times piece on the effect of swine flu-related school closings on special-needs parents.)

[Image: Credit: Valeriana Solaris (flickr.com)]

I’m helping an undergrad prepare a term paper on “family intervention” (does that include Merlot?) and its “positive effects” on autism. The report aims “to inform people about autism and ways family intervention help it.”

That help is a sound theory, at least until Alex’s parents start screaming. We intervene with Alex when needed: pick up toys; sit with us through family events and not run off to the TV to blast Elmo; stop at the edge of the curb; please someday eat more real food.

This student is questioning a friend with autism, in addition to, among parents, at least Jill and me. Her topics will include the definition, symptoms, history, and prevention of autism (ah, youth — good luck with that last one!), then flow into how families can help their own kids.

We help Alex any way we can think of, which often and sadly isn’t much, and I’ll loudly echo Jill here in saying that Alex has become superb at setting a table - handles of the coffee cups all pointing the same way! And, once cranked up, he puts laundry away with the best of them. He also seems to want to fly into putting placemats in the dinner table, though he doesn’t seem to want to eat with us.

Among the student’s questions:

Does family involvement help ease the symptoms of autism? (My answer: “Sometimes. Some people in social settings can have a hard time understanding Alex and his behaviors. Sometimes it’s easier having both me and my wife to help directly with Alex, though that can also cause strain as we might differ on how best to handle a situation.”)

How do you feel your other son has helped ease Alex’s adjustment? (A: “Alex’s teacher says that not long after Ned started taking Alex’s hand at home and getting him to play, Alex started taking the hands of his classmates in school, trying to get them to play.”)

And what I think is the big one:

Do you think that with awareness, society will learn to accept those with autism? (A: “Someday. Before then, however, a big bill may come due as these children age into adulthood.”)

She wanted me to explain that. I will soon, but I’ll start by referring readers to the link below.

This project gives me hope in that a person barely out of high school is weighing such potentially society-shaking issues as autism (and considering a career helping the autistic). I did my term paper on Trafalgar. Look where it got me.

Reprint of a Washington Post article on the potential price tag of autism among adults here.

Recent I joined a sped educators’ board over on LinkedIn recently, “Special Education Innovators.” I’m not a special educator but I like to think some of them would like to have a parent’s perspective now and then.

Discussions are half the fun of LinkedIn groups, and when things are slow I like to pose a question. So I posted: “What’s the best and worst thing for educators when it comes to dealing with parents of kids with special needs?”

Image: usgarchives.net

I got two responses, both insightful.

“The Best?” replied one group member, “Concerned parents who are honest with themselves about their child’s needs. They are generally better informed, and maintain a healthy collaboration with educators and related service providers. The Worst: An aggressive, uninformed parent who comes to school once a year to make unreasonable demands for academic results. They rarely even check their child’s bookbag for teacher communication. Parents who work two jobs, group home guardians, and unconcerned parents rarely make any contact with professionals.”

(Two jobs? Will this economy spare no aspect of our lives, not even parent-teacher conferences?)

“The best thing you can do is stay informed and involved in your child’s education and have realistic goals and dreams for him or her,” replied another member. “Also, make sure your expectations for the teacher and school staff are reasonable, as well. Most teachers I know welcome open communication between home and school and an informed, supportive parent is wonderful. The problems come when the parent becomes so focused on his or her child that he or she forgets the teacher has other students for whom she’s responsible, as well as other school-related activities, and begins to put unreasonable demands on the teacher’s time and attention.”

We’ve tried to adhere to these rules with Alex and his teachers. We send at least as many notes back to school as we receive, and have often been the ones initiating exchanges. We slate our parent/teacher conferences outside the set and regimented days and hours, as long as his teacher agrees, because we figure it gives the teacher more time to talk to us and more brain space to think about Alex. Jill also teaches knitting every Friday morning in Alex’s class, so gets a chance to see how he’s doing real and close up.

The Alex we’ve seen in the classroom - velcroing the right date to the wall calendar, leading the “Pledge of Allegiance,” taking classmates by the hand - is often heads above the Alex we see at home, where every afternoon off the bus he just wants to shed his khakis and munch a few pretzels on the way into evening. The Alex we see in the classroom, I like to think, is more like the grown-up Alex we’ll someday launch into the world. Seeing him this way is well worth shuffling the schedules and making time to stay informed. Hope it stays that way after one of us has to get a second job.

I’m not going to say much about Alex’s toilet training because: 1) I wouldn’t want him talking about mine; and 2) Jill handled it. I’ll never be able to thank her enough for causing this bullet of special-needs parenting to miss me. I’ve heard some hard stories about this topic and the autistic, and I’d like to do anything I could to help parents with teaching this sometimes heartbreaking life skill.

Image: sxc.hu

Aim, however, is another matter. (I’m no marksman, either, but in recent years my aim’s been flawless because I’ve been so tired I take the opportunity to have a seat.) I’ve been coaching Alex on a simple premise: hit the target.

“Make it rain, doofus!” my big brother used to say to me (still does, and I’m 47). I object on a couple of levels to calling my own autistic son “doofus,” but I do think my brother’s lesson has some nuggets of wisdom in it. Among them: teach Alex that if he’s making a noise with the water, that’s good.

“In the water, Alex,” I’ll say, “make it hit the water. Not the side and not the wall.”

Generally, he tries very hard to hit the target (harder for sure than I once saw a men’s room full of drunken grown-ups do after a big NFL game). Alex tries hard, except when he thinks it’d be more fun to pull the front of his T-shirt up over his face and play RFK Stadium Men’s Room.

“ALEX!”

So as a family we segue smoothly into our next lesson to prepare Alex for life and to tell ourselves we have a normal kid: We make him help clean up. He doesn’t exactly fly into this unpredicted aspect of toilet training, and I feel a little like an abusive dad making him do it - but God, look at the puddle back by the wall! I finish it off anyway, using Jill’s incredible homemade cleaner.

The lesson here for me: He pulls his shirt up not because he’s autistic, but because he’s being a wiseass. That makes me feel mad and comforted at the same time.

Toilet-training help:

http://baby.lovetoknow.com/wiki/Potty_Training_Autistic_Children

http://www.teacch.com/toilet.html

http://www.starautism.louisville.edu/images/pdf/Toilet%20Training%20and%20Toileting%20Issues%20for%20Children%20with%20Autism.pdf

Often through Alex’s seven years of formal education, I’ve had to learn why he does what he does in school. A few years ago, I was unsettled by the amount of coloring homework he brought home. How was coloring ever going to help him get a job, especially since he could rarely stay within the lines?

Image: sxc.hu

Then we went to a parent-teacher conference and I chatted with his OT. “When Alex does his coloring,” she said, “make him do it standing up, with the paper held against a wall. This strengthens his arm for writing.” I’d never thought of that. Were we correct in how we were teaching him how to write during homework? Well, no. We used markers at home, and his teacher called them “cheating, because they make the stroke evenly for you.” We should also have let Alex use only short pencils, she said, about the length of those you’re issued on miniature-golf courses, because they also prevented him from holding the pencil too far up.

One of Alex’s recent IEPs contained, at my insistence, teaching him to use a fork and teaching him to blow his nose. The fork’s a work in progress, but somebody sure taught him in the last few years how to use a Kleenex, and his number of respiratory infections has since plummeted.

The Alex in school, even special-needs fifth grade, is not the Alex at home. Once upon a time he would only cling to us when we visited his classrooms, and cried when we left. Then he went through a period of eying us askance when he found us there, then studiously ignoring us. Now he comes up and takes our hand but only for a moment, then heads off to his morning’s work the way anyone might if their parents popped into their office unannounced. This I find encouraging.

Jill and I were in a typically over-shopped Manhattan grocery store the other day. The shelves were disordered, and while Jill picked out her cans of chicken broth I straightened one part of a shelf, and a thought stuck me of Alex flawlessly sorting shapes and colors from about age 2.

Too bad he can’t pick the right stocks instead, I said to a friend then.

Maybe he can do that, too, she replied.

The thought came to me of Alex today, arranging toy animals by height and color on our living room rug. “You know,” I said to Jill in the grocery store, as I placed the green beans back where they rightfully belonged, “I have no doubt Alex could stock shelves some day.”

Alex can do much more, we’re coming to think, but we’ll find out what that is only as our education continues.

Learn more about IEPs at http://www.wrightslaw.com/advoc/articles/iep_guidance.html and http://specialed.about.com/od/iep/Individual_Education_Plan.htm. And Google “SEPTA” and find out about local special-education PTAs nationwide.

Along with reading goes writing. I started with a hand-over-hand method with Alex months ago, helping him fill lines of wide-ruled paper with words of things he loved: Mommy, Daddy, Ned, Toast (our cat, who he doesn’t love strictly speaking), grandpa, Aunt Julie, Uncle Rob, Elmo. Actually, we usually put “Elmo” first.

I held his hand as lightly as possible in mine during these exercises, guiding him only when needed through the letters. I hoped eventually to work my way down to his wrist, then to his elbow, then to let go entirely. The job was filled with unexpected delights: Once when a cold was going around the house, I tried to get him to write “cough.” We got as far as the C and the O when Alex asked, “Cold?”

The problem came when I tried to remove my hand. Alex was once penciling a line of ABCs when I pulled this. He patiently put down the pencil and reached out to place my hand back on top of his.

“No, Alex. I know how to write ABC. You do it…”

“You do it!” he said.

“Alex, c’mon. You can write this.”

“You do it.”

I think we actually did once write a line of “You do it”s.

We’re trying to do more short sentences now. Jill gave him a toy cheese wedge over the weekend, which he almost immediately began to play with, pretending to chew and swallowing elaborately. (This is a proven tactic for eventually getting him to eat real food.) I grabbed a pencil and a piece of paper and wrote, “I am eating cheese.”

When I show him these phrases, scribbled as soon as possible after he’s done something he enjoyed or asked a question or made a comment, Alex stops dead. Sometimes he looks right up at my face.

He placed his finger on the first word and said, “Eye. Eye want…”

“I am…”

“I am want-”

“I am eat…” I say, and let him finish:

“I am eating cheese! I am eating cheese!” We need to move on to little stories.

Temple Grandin offered her take on teaching autistic children to write here.

FICTION FOR NATIONAL AUTISM AWARENESS MONTH: Autism in non-fiction captures many headlines, but the condition shows up in fiction, too. The Library Journal offers a rundown of titles here.