[See 11/20/14 postscript that follows this post.]

Jerry Seinfeld has said he thinks he has autism. High functioning, yes, but on "the spectrum."

When I was in grad school en route to being a licensed clinical shrink, and even earlier when I was taking an undergrad abnormal psychology class, one of the hallmarks of us newbie rubes was learning about various disorders and thinking, "Oh my god, I'm _________." Depression, Bipolar, all the personality disorders, you name it, we were all it.

After awhile, we figured out that there are bits of every disorder in all of us, but in small bits that don't become disorders unless these little bits become big bits that create trouble, misery and dysfunction for us. Feeling sad doesn’t mean you suffer from major depression. Feeling giddy over lunch doesn’t make you bipolar. And don’t get me started on the most over-diagnosed of all (by amateurs), Borderline Personality Disorder.

A pinch of salt in a recipe adds flavor. The whole container of salt makes it inedible.

Sure, maybe Jerry Seinfeld has a pinch of “the spectrum.” His little bit spiced up his life and helped him reach the summit of the comedy world.

Our son Ben got the whole damn box. His version of the spectrum is a disorder. It is autism. It has destroyed his life.

Barring a professional diagnosis stating otherwise, Jerry Seinfeld’s version is simply a part of his quirky, brilliant personality. Maybe his social awkwardness made some interactions difficult. Maybe his supposed concrete literalness made for some misunderstandings.

Sound familiar? It should. It’s half the people I’ve ever known.

Seinfeld’s self-misdiagnosis underlines the problem of a “disorder” that is a spectrum wide enough to embrace super-functional geniuses and the severely impaired. It opens the door for this kind of amateur absurdity.

We are all miserable at various times for various reasons, some of them internal.

Some of our internal demons share bits with those “on the spectrum.”

There is a term for that. It is called being human.

It is not autism.

POSTSCRIPT: All is forgiven, Jerry!
TIME online, November 20, 2014: Comedian Jerry Seinfeld has backtracked on recent comments he made stating that he was on the autism spectrum. In an interview with Access Hollywood, Seinfeld said he does not fall on the spectrum, contrary to an interview with NBC a few weeks prior in which he said he did. “I don’t have autism, I’m not on the spectrum,” the Comedians in Cars Getting Coffee star said Wednesday. “I was just watching a play about it, and … I related to it on some level.”
http://time.com/3596612/jerry-seinfeld-autism-spectrum-aspergers-syndrome-neurotypical/

A huge issue in autism right now is:

Who gets to define "community" when it comes to where adults with disabilities live and work?

These days, “community” is being redefined in the narrowest terms. As our friend, Gene Bensinger, writes:

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Should a handful of publicly funded, highly intellectually skilled and bureaucratically entrenched disability rights activists "own" the definition of what constitutes a "community based" organization? I think that judgment belongs to the program or residential organization's voluntary participants. If embraced by States, the rigid and absurdly narrow definition of "community based" (hint: independent living only) that many of these activists promote will result in the defunding and closure of many essential provider organizations like the focus of this article, Bittersweet, and in Chicago Misericordia, Lambs Farm, and thousands of others across the country. In their stead, these "one size fits all" ideologues promise us...a utopian dream devoid of specifics. Uh, no thanks. Not a chance. Person driven choice with many available options, from highly structured to independent, is the answer. For more, see: http://www.autismhousingnetwork.org/advocacy/coalition-for-community-choice/

Gene Bensinger

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This article from the Toledo Blade lays out how new regulations may effect an extraordinary agricultural community for adults with autism in Ohio, Bittersweet Farms, and other programs like it. We were lucky enough to spend a weekend at Bittersweet for the inaugural conference in May of 2012 of the Agricultural Communities for Adults with Autism (ACAA).

For many parents like us, with young adults on the autism spectrum, Bittersweet is a shining example of what is possible on a campus-based setting. The residents are engaged in meaningful, satisfying activities based upon their own desires and capabilities, and are likewise independent to the maximum degree that each individual is capable. The residents live as part of a safe and enriching community, within the larger community near Toledo in which individuals are engaged in a variety of ways. Closing, or preventing programs like Bittersweet to even exist let along flourish would truly be tragic.


With the coming tsunami of adults with developmental disabilities who are aging out of school district funding, we need expanded and creative options based on a continuum of choices that itself reflects our adult children. Autism is a spectrum disorder, and it is an extremely wide spectrum. We do not need a one-size-fits-all, narrowly defined and restrictive set of definitions for what constitutes appropriate settings for adults with disabilities to live and to work.

Most parents with children on the verge of transitioning from school-based funding to the completely different world of adult services are unaware of this ideological battle being waged. Many parents we know have expressed a dream that their child might one day live in a campus based, intentional community of some sort. It is time to make our voices heard in this debate.

Monday mornings rarely are, um, euphoric. But today’s train ride into town came with an especially lousy mood.

In fact, I posted something to Facebook on my ride downtown, not something I usually bother with at 7:00 AM:

“Two very loud and idiotic women in my train car this morning ‘conversing’ at full volume, loudly laughing at such witticisms as, ‘Oh my god I'm so glad you found your keys because I freak out every time I lose mine!’ They have fully primed me for a curmudgeonly day."

See? Extra grumpy. But there was nothing particularly dreadful awaiting me at work (that I knew of, anyway). Then it finally dawned on me.

The IEP.

We’ve been attending IEPs for Ben since his earliest days. (IEPs are the Individualized Education Plans crafted at least yearly for kids with various special needs, like Ben’s brand of severe autism.) We’ve had such meetings since Ben’s first years at local schools when he was a tyke, through the five years (starting before he was 13) at the Oconomowoc Developmental Training Center up in Wisconsin, and then when he graduated to his current program 3½ years ago at the Monarch school in Cleveland. IEPs are detailed attempts to organize and maximize his educational programming, to bring him as far as possible, and they’re required by law.

Friday, we headed to Cleveland for Ben’s visit a day earlier than usual so we could attend an IEP meeting.

Our final IEP meeting.

Ben turns twenty-two July 30th. That will be his first day out of the educational system and its funding and into the completely “different” rest-of-his-life world of Adult Services. He will move back to Illinois from Ohio. Into what exactly? We don’t know yet. We’re working on it, but it will be an absolutely massive change for a guy who loves school and the place he lives. Ben is busy with purposeful activities, surrounded by a small army of exceptionally committed and smart people dedicated to him and his fellow residential students.

But come July 30th? As Alice Cooper once wailed gleefully, Schools Out - Forever. What may have been joy for Cooper will be sadness for Ben. And the laws and regulations he will be living under will change as well, and most will make life more complicated and challenging for him and us.

We will have no more IEPs. Instead, we will be operating in a much more do-it-yourself world. And there’s a lot to do. But with far less help.

Never has “next year” carried so few assurances.

Or so many unknowns.

When feeling this way, I’d normally want Monday to end and Tuesday to get here ASAP.

Except today, I’d rather time just stop. Or at least slow way, way down.

Ben looking in the window of his cottage at Monarch.

I've never posted a pic of food to Facebook - until this one. Nothing against it, just not my style since I'm usually too impatient to delay gratification enough to snap anything but my jaw. But here is my first. The tale...

The B-Spot in Woodmere, a suburb of Cleveland near Ben's suburb of Shaker Heights, has something called the Ghost Burger. It uses salt made from Ghost peppers, rated really, really high on the Scoville Scale that rates peppery hotness. But the docs have told me that if I eat any more salt, my skull will pop so that's it for my favorite burger.

Last night, after our Saturday with Ben, we did our usual burger and beer at the B-Spot. But this time, I came prepared. One habanero pepper rated way high by the Scovilles, purchased at Whole Foods. The weight at the cash register of two-one-hundredths of a pound was probably one-hundredth pepper, one hundredth plastic bag. Total cost: 5 Cents. And my nibble test at the restaurant had my lips burning, so it passed. Chopped and laid neatly on the patty, it was hot bliss. So here's the pic, pre-nibble-'n'-chop. And beer is essential when eating habaneros. Karen, in "sympathy," had a Hot-and-Dirty Vodka martini (with Sriracha, olive juice and blue cheese stuffed olives).

And, as a side note that happens far too often these days, our bar-mates (we like the bar for our Saturday night meals) were a couple with kids on the autism spectrum. Booze and commiseration go well together.

So, cheers!

We saw this today, a post by blogger Erin Polk, about how welcoming and helpful their local 5 Guys Burgers is for her son with autism: http://themighty.com/2014/10/a-letter-to-our-favorite-burger-joint-from-the-mom-of-a-teenager-with-autism/

We agree, and have had the same experience with Ben's local 5 Guys. When we walk in, before even ordering, they are putting fries in a bag for us so Ben can happily munch while they're making his burger. In many other little ways, they are the exemplars of how to deal with and help families like ours be out in the "real" world.

Ben would love to join the 5 Guys (and Gals) back there.

Happy Ben with 5 Guys Fries.

Ben, as is the case with many people with autism, loves deep pressure, or squeezes as he calls it. He loves laying down and having me (6'5", and, ahem, not skinny) lie completely on top of him, my dead weight creating what for most people would be a claustrophobic nightmare. He also frequently requests squeezes by saying, "On my back please," which means standing up and giving him a bear hug from behind, as tightly as can be and, if possible, lifting him off the ground. While I can (just barely) manage this, most of his other squeezers are young women who are a foot shorter and half his weight. But his people at Monarch know how to give him what he wants and needs, and here he is under the covers in his bed with the wonderful Violet working on him, yesterday.

After linking this blog entry to Facebook, machines for deep pressure were brought up, to which I responded: I think it was via Temple Grandin that we first heard about the squeeze machines years ago, and they were several thousand bucks, like a recent one I found on-line for $4525 (plus shipping of course). As with everything autism-related, it'll bankrupt you.

Horrible times for the family at the moment. After having his third gallbladder attack in several years, Woody, Ben's maternal grandfather with whom we've been living for the past 18 months, checked in to have it removed three weeks ago tomorrow. He was feeling fine, and in fact was working in his garden, as usual, the day before. When they went in, the doctors found lots of bad cancer, the kind that translates to survival rates of double digit days, no more. To make matters far worse, from the moment he came out of the anesthetic, it was torturous agony for a week until they finally clobbered him with pain killers once the focus shifted from recovery to comfort. He drifted away a week ago today, 13 days post-surgery. Ben lost one of his biggest fans and loving supporters. We will all miss you terribly, Woody. Here is more about him, including my eulogy for his service, and Rick Kogan's feature obituary for the Chicago Tribune.

I know I've said things like this, as have many in our shoes, but I like the succinct sum-up Karen Vano, a member of the Facebook group, "Extreme Love: Raising A Child With Severe Autism," posted this week (reproduced here with her OK):
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I think a big part of the issue with autism is that there are too many people with different ideas of WHAT is needed. Those with High Functioning Autism want the money for "awareness and acceptance of their differences," and we [families with classic or severe autism] want the money to freaking survive and have help with daily living. That, I think, is what does a huge disservice to the whole "spectrum community." The opposing ends of the spectrum are just night and day.

Karen Vano
---
Thank you.

We have begun our fourth and final year at Monarch (Ben’s funding will end on his 22nd birthday in July). We don’t like to think about it.

So we’ll think instead about the visit we had this past weekend. It held a bit of a revelation.

Ben’s very, very, veryveryvery particular about his food, and one way he is no different from so many of us neuro-typical guys – he hates vegetables (fries excluded). So we try to sneak them into his innards. It ain’t easy. When once Karen mixed a small amount of super-finely cuisinarted carrots, barely even visible, into his meatballs, Ben attempted to pick a couple of the orange specs out, before simply rejecting them.

It’s not just vegetables. Anything he doesn’t know or like will not get past his lips.

Karen had just returned to the hotel room with food to cook for dinner. A nice thing about staying at Homewood Suites is the kitchen. Karen can actually cook something. And cooking is her thing. And eating is Ben's thing.

I was posting about Ben on Facebook and was asked what Karen had bought. I asked her, and as Ben paced and watched three videos simultaneously (more about that below), she said, "a half pound of chicken maple sausage patties mixed with a half pound of ground sirloin into burgers, put some tomato sauce and fake cheese on top, and he also has some potato gnochi with fake butter, and some dairy free cupcakes for desert." (Ben’s currently on a dairy-free evaluation.)

Now Ben has combo-burgers like that all the time. He loves them. We just call them cheeseburgers. But we now know that his language reception is more advanced than we thought, even when it seems he is completely focused elsewhere. Having heard Karen describe his burger as having something mixed in, he wanted nothing to do with it. Wouldn’t touch it. He asked for a peanut butter and jelly sandwich instead.

Then another little shocker. After knowing gnocchi as “little potatoes” all his life (a more descriptive name we’ve used so he’d know – and eat – what he was getting), for the first time, having heard Karen, he asked for more “gnocchi.”

This might not seem like a big deal, but it has certainly opened our eyes. More is getting in there, and understood, than we have realized.

Less of a surprise, but striking nonetheless, are his developing computer skills. In the past, we’ve watched Ben’s attempts at navigating with a mouse, and using it purposefully on screen, with little success.

Monarch has brought him a heck of a lot farther along in this area, too. When I walked into the hotel room with Ben, my laptop was on. Before I knew it, he’d quickly located, among a zillion icons on the computer desktop, the folder labeled “Ben Videos,” and clicked on it. Then he scrolled down the list and clicked on the one he wanted. As it began, I was about to take over and click on the little square that opens the picture to full-screen. But he beat me to it. Then he beat me to the volume control to turn it from silent to loud. No help from me at all.

As we’ve felt from the moment he arrived, Monarch can bring him as far as possible before he plunges into adult services. The goal will then be for him to continue developing, or at least not slide backwards. That will be a challenge that never ends.

This picture is of Ben at the place we often go to “look at the owls,” a small bird sanctuary with hawks, eagles, foxes, and owls in one of the Cleveland area “reserves.” The board book he chose to carry with him? The Owl and the Pussycat. However, looking at a black hawk while wearing a Chicago Blackhawks shirt? That’s one we’ll chalk up to coincidence.

Later in the hotel room, that same book was smashed against the ceiling after which Ben said "Juggling!" It’s something he picked up from a video, and he’s almost lost a book or two when he has “juggled” outside.

In this pic, Ben’s IPad is on the table showing Sesame Street Silly Foods, the laptop in the background has Old McDonald’s Farm, and the TV/DVD is running Clifford the Big Red Dog. As he paced all over the place, Ben hollered, “Cow!” Made me think of an avant garde theater production.

After the videos, we headed out for the day's final early evening "drive fast" through hither and yon. We have yet to locate either one.

As of yesterday, our clock is ticking.

Jake and Ben turned 21.

For Jake, after a favorite dinner (Wildfire for ribs), we went home where a bunch of his friends came by for cake and revelry, and it was what a 21st birthday should be (and more – the peanut butter chocolate birthday cake, whipped up by Bubbe Florence, surpassed anything you’d find in any bakery in this or any other world; in other words, her usual).

Ben got a phone call. We’d arranged this past visit so we could be there as close as possible to his birthday, so on the day before (Tuesday), he had a cake and we sang Happy Birthday to him in our hotel’s dining room, surrounded by the friendly hotel staff, and gave him a bag-load of presents. And yesterday, his staff at Monarch also had a party for him and, based on the video clip they sent, he had a great time.

Twenty one. Hoo boy. Talk about mixed emotions.

In a year (actually, 363 days -- the ticking time bomb part), Ben will age out of his current funding into the darkly nebulous and underfunded world of adult services. We are working on plans, plural, because the reality is, families like ours try to have alternative plans B, C, D, and E to go with plan A. Very little is certain in the often do-it-yourself world of severely autistic adulthood.

Twenty one years ago, Karen and I were still at the hospital (twin births got an extra day), getting acquainted with the little creatures we’d just met at 3 AM the day before after a long, useless 20-hour induced labor and eventual C-section. I don’t remember most of what was going through my head, but probably blended with the usual new-parental hopes, dreams, aspirations, and blah blah, I do remember thinking that I really had no idea what to expect.

I was spot on.

I don’t write much about Jake because, besides his right to privacy, if he wants to share his life with the rest of the world, he has the ability to do it himself.

Not Ben. Not now, not ever, barring a miracle. Sharing with us that he has a headache would be miracle enough. Each birthday, we do everything possible to make it a fun and special one for Ben. As for me, the nostalgic life review that parents drift through on their kids’ birthdays conjures beautiful, joyful moments mixed with plenty of struggle, tragedy, pain, and hopes adjusted downward.

We don’t dream of a spouse and a fulfilling career and kids of his own. We hope, instead, that by the time we -- Mom and Dad -- check out, Ben will be in a decent living situation, spending his time in purposeful activities that keep him engaged, with kind and competent people helping to get him through his days and nights and months and years.

That would be our dream-come-true for our Big Benny Boy, who now is our Big Benny Man, even if he still prefers Barney the Dinosaur to Barney Fife.

------------------------------

A brief videoclip: Ben blows out the candle
https://www.youtube.com/watch?v=QHmWFD84jSU&feature=youtu.be
(Thanks to Monarch for the clip!)

-----------------------------

After his cake, Ben digs into his presents on the day before his 21st birthday, July 29, 2014.

As we've mentioned before, a big Ben mystery is how he perceives and responds to pain. The latest: He started limping this week, getting worse each day until yesterday, when he couldn’t walk without bracing himself on tables or countertops.

We’re told he enjoyed at least some parts of the ER visit, especially his bed being wheeled around for x-rays. Which showed a stress fracture in his foot. He also has cellulitis in his leg.

How he got them is unknown, but Ben’s favorite activity not involving food is walking and walking and walking. Hopefully this won’t be the beginning of longer-term problems.

He’s in a boot for the break, on antibiotics for the cellulitis and we’ll be extending our 4th of July weekend visit to Monday for a follow-up doc appointment. He never complained or communicated anything about hurting, except through the worsening limp. It’s never easy with Ben. Everyone has to be a detective to sleuth out something as basic as pain.

Ironically, one of the self-scripted lines he used to recite (I believe from a Richard Scary video) was, “Ouch my knee.” We’ve tried to use it from time to time, saying, “Ouch my …” and hoping he’d finish if he had pain or discomfort. But usually when he did say it spontaneously, like many of his scripted verbalizations, it never seemed connected to anything he was directly experiencing. More often that line has seemed to bubble up when Ben simply was unhappy about something. Other than, apparently, a broken foot.

Ben waits to be examined in the ER (Thanks Jenny for the pic!), July, 2014

Ste-Aira walking/holding Ben as he walks to school with his new boot (Thanks again Jenny for the pic!), July 2014

...and his previous visit to the doc a few weeks earlier:

Ben at his gastro exam this past May. As the doc began pressing on his stomach to begin the exam, Ben immediately reached over and removed his stethoscope and handed it to him to listen to his heart first because, hey, that's what doctors are supposed to do. After listening, the doc was allowed to carry on with the tummy-presses.

WARNING: RANT MODE ON

This blog posting by a father with a son with autism is a year old but I just discovered it (thanks Reece Pendleton). It speaks for many of us with progeny whose lives have been destroyed by this nightmarish condition. And I give less of a rat's ass than he seems to about certain people's negative reaction to people and families like us who HATE HATE HATE severe autism (but I suppose there are people out there who also embrace pancreatic cancer).

http://baldscientist.wordpress.com/2014/01/17/updated-due-to-recent-events-how-much-do-i-hate-autism-read-the-post-before-yelling-at-me/

If my equating pancreatic cancer seems extreme and (understandably) bothers those who have experienced, directly or via loved ones, pancreatic cancer, I'm truly sorry. But anyone else who tries to tell me they are offended by our position on severe autism, please don't bother. Tell it directly to Ben instead. It's HIS life that has been completely, utterly devastated. If you can express offense, if you can compose a reply, not just in writing, but simply by voice, if you can CONCEIVE the differences between neurotypicals and those with autism, if you can put together, without effort, a three-word sentence, if you have the potential to live without 24-hour-a-day assistance, then you probably have no idea what you are talking about if you think we, or Ben, should embrace his "differences." Start your own blog, and don't bother with mine.

RANT MODE OFF (for now)

The Ben Blog’s gone a bit quiet lately, as the past couple of months have been a real ordeal for Karen. In March, she had a pulmonary embolism (a blood clot that traveled from the leg and lodged in the lung). Complications from the treatment lead to seven trips to the ER, several hospital overnights, a blood transfusion, intermittent fevers, countless blood draws, a month of missed work, exhaustion, and a slow road back to feeling halfway decent.

One particularly lousy part was, by doctor’s order, not being able to make the trip to see Ben in Cleveland for almost six weeks – including all of April, the longest he has ever gone in his entire life without seeing his Mom. I went by myself for a visit in between, so it wasn’t complete parental cold turkey for Ben, but the missed visits only made everything that much more miserable for Karen. We have never appreciated Monarch more. Not having to worry about Ben’s care through this period was, to put it lightly, a big help.

The embolism was almost certainly brought on by our frequent Cleveland drives, yet another manifestation of autism. As Karen said eight years ago on our This American Life episode, “Autism was becoming a fatal condition for me,” and the fact is, 30% of the time, pulmonary embolisms ARE fatal, but if that doesn’t happen right away, you’ve dodged a bullet. Embolisms are not an uncommon hazard for business travelers who spend hours at a time sitting in jet planes. For us, it’s a Hyundai, and it isn’t just the driving to and from Cleveland. More than anything else (except eating), Ben loves to “drive fast,” so we spend hours going to Pittsburgh to visit friends; or walk the beach at Presque Isle State Park in Erie; or check out Jamestown in upstate New York; or see what Ohio’s Cedar Point Amusement Park in Sandusky looks like when shuttered for the winter; or etc. etc.

Driving is what we do. But now we take walking-breaks at least every couple of hours to, from, and with Ben. So the prescription to avoid future embolisms is pretty simple, and for that at least, we don’t even have a co-pay.

Ben sprints through Target en route to the kids books section, Memorial Day Weekend, May 24, 2014.

UPDATE: I received a call from a friendly and apologetic person from the Skyway company on Monday, May 19 (seventeen days afterwards), who agreed that the situation was mishandled, and assured me that it would be discussed with the employee.

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“Do NOT back up!”

Some version of this warning is visible on many highway toll booths, no explanation necessary. At least not for those with a functional brain cell or two.

The employers at the companies that acquired Chicago’s Skyway toll bridge may wish to double check the brain cell quota used for their hires. It seems to be less than their quota for nastiness.

Heading out of town Friday afternoon, May 2, at 3:30PM (I happened to glance at the clock as we approached the toll booth) we pulled behind two other cars heading into an open I-Pass lane.

An I-Pass, for the toll road deprived, is a little plastic box called a transponder attached to the windshield that triggers the toll gate to go up as the car approaches (assuming your account has cash in it), allowing you to keep slowly rolling through, no stopping required. In theory anyway. From time to time, things don’t work right, and the gate stays down. No biggie – you open your window, push the “call” button, explain the problem, a voice asks for the transponder’s serial number, the gate opens, and off you go.

In this case, the car ahead of the car in front of us stopped, the gate down. An arm emerged and pressed the call button, and after what seemed like too long, the gate finally opened. Next car, same story – gate stays down, button is pressed, a minute passes, gate goes up, car pulls away. Our turn. Gate stays down, we push the button. We wait. We push it again. Nothing. “Hello?” I say. Nothing. Button pushed. Wait. “HELLO,” this time hollered over the car and truck noise. Nothing. I push the button again. Nothing. I try a fifth time, with the same (no) result. By now, I am annoyed, and get out of the car (not optimal in this location), look toward the staffed (cash) toll booths and wave my arms over my head, shouting “Hey!”

Nothing.

Back in the car, I push the button for one prolonged buzz before a voice finally emerges. “Can I help you?” “Yes! The gate’s not working! Please open the gate!” I say, no doubt my irritation obvious. Nothing. Uh oh, don’t piss off the toll attendant. I push the button again and holler, “We’ve been stuck here for five minutes!”

“Yeah?” said the dismissive voice, “Then it’ll be another five minutes.”

The gate stays down. Now I am pissed. Really pissed. Rush hour traffic is moving past us, the Skyway is crowded, and I am trapped unless I want to do exactly what I shouldn’t, what their own signs advise me not to do – risk life, limb, wife, and car to roll back, way back, out of this lane, across three lanes of cars, and into another lane. As I start do this, I see that the light above our lane has been switched from green to a red X, which is why nobody is behind us any longer. We make it over to a staffed lane.

Of course, that gate immediately goes up because there is nothing wrong with our transponder. We quickly explain to the attendant what happened and ask where we can go to see a supervisor.

It turns out, of course, that those answering the buzzers are not even at that toll location, but in “the tower," which we could see, but is not accessible from the Skyway. We asked the name of that person. “It may be Shantay.” We are told to pull up and over (still not out of the direct path of traffic), and soon the attendant left her booth and gave us a phone number. So, at 3:44 PM (according to our on-line I-Pass account), after 14 minutes, and $4.03 (the toll), we are on our way, again.

We call the number, explain what just happened, that their employee just caused, not only frustration, but a seriously dangerous situation. Of course, this wasn’t somebody who could help us, but we would get a call back from someone else in 24-48 hours, we are told.

As I write, it is now lunchtime on Monday, seventy hours later. No call yet from the private company (or companies) which hold a lease to the toll bridge for 99 years, the “Skyway Concession Company” combining the Australian “Macquarie Infrastructure Group” and the Spanish “Cintra Concesiones de Infraestructuras de Transporte S.A.,” whoever those entities are on the other sides of two oceans.

There are 92 years left on their lease. We hope to hear back by then.

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[Also sent to the Skyway via their website.]

This apparently ran this past weekend when I was, not ironically, with Ben in Cleveland. For those who (like me!) are not paying subscribers to the Trib's book review section (Printers Row Journal), I've pasted the review below, with a link after:

--------------------------

Chicago Tribune

Printers Row Journal

Review: 'Life, Animated' by Ron Suskind

Kingswell, 358 pages, $26.99

Suskind's account of his son's triumphs with autism inspires, but it's not universal

April 18, 2014

By David Royko

Ron Suskind's "Life, Animated" is an extraordinary saga of an exceptional boy from a remarkable family and their compelling journey through autism.

How much more it is will likely depend on the reader.

Those looking for a smart, well-written, deeply moving, up-from-the-depths inspirational tale with a positive ending should love it. Families with autism might have more divided reactions.

Full disclosure: I am among the latter, with a severely autistic son almost 21 years old, two years younger than this story's subject, Owen. My own ambivalence mirrors the dichotomous reaction "Life, Animated" will arouse in the increasingly diverse autism community.

The book's publisher, Kingswell, is a Disney imprint, and suspicion is warranted because Disney movies are Owen's redemptive bridge to the outside world. Suskind's disclaimer that The Walt Disney Company "agreed to exert no influence whatsoever over the content of this book" is easy to believe, since Disney can only be thrilled with the story, but still...

"Life, Animated" opens with a wrenching description of the fall from typical development into autism hell. Thousands of families experience what Pulitzer Prize-winning political writer Suskind portrays. The loss of just-developing language and motor skills (like having difficulty with a "big boy cup" that had already been mastered), the retreat from interaction into a remote and isolated internal place, idiosyncratic and self-stimulating behaviors like flapping and hard-to-decipher movements and vocalizations, an apparent stalling and slipping of cognitive development — all parts of the bombshell hurled at one child out of 68 these days, according to the U.S. Centers for Disease Control and Prevention.

That's the first 24 pages, after which the story really begins: Owen's journey from classic autism to a life of independence, complete with career potential and a love life, achieved through lessons learned and a way to express himself via (mainly) Disney movies.

The already-old saw that "If you've met one person with autism, you've met one person with autism," reflects, in part, the unpredictable path those with classic autism travel, with some remaining hidden in their internal worlds while others emerge.

It also speaks to the vastly different ways families confront the disorder. One would never wish autism on anyone, but the Suskinds are, as much as any family can be, in a good position to wrestle with it.

They are an exceedingly bright and insightful bunch, living in an area (the vicinity of Washington, D.C.) relatively rich in services, with a dedicated, resourceful mother and a prominent father with professional clout and connections; how many dads could set up a meeting between their son and a top Disney animator, who is actually considering Owen's story ideas for a full-blown animated feature? As with virtually any family dealing with autism, every advantage will be exhausted and disadvantage battled.

Owen is a deep thinker and uses Disney to communicate abstract thought and deep emotion, often metaphorically. These qualities were buried by autism, and it is impossible to know how much would have come to the surface with other parents.

Many families with autism will feel intense, commiserative familiarity with issues the Suskinds confront. Owen gets kicked out of a favorite school; is tormented by sadistic bullies; has to be home-schooled for two years; has a hard time being accepted by potential landlords for a tiny, self-made group home. Cornelia, Owen's mother, has jettisoned much of her own life because of autism's demands.

Cornelia, in fact, is almost archetypal in her transformation from an ordinary if accomplished and impressive mortal into a Supermom. The world of autism is silly with Supermoms at all educational and socioeconomic levels, because autism demands it (and yes, Superdads too, though their roles tend to be different, daddy Suskind included). Acknowledge or praise such a parent, and the response will be some version of, "We only do what we have to for our kids."

For the Suskinds, it pays off. Owen lives independently and has known rudimentary, grocery-store employment, with greater potential thanks to his artistic skills.

The Journal of the American Academy of Child and Adolescent Psychiatry recently reported that only 20.9 percent of young adults with autism spectrum disorders work full time, so Owen is far from alone even if he is in line to move ahead of the curve. Nothing, though, shows his emergence more than the final photo in the book's gallery — Owen standing with an arm around his girlfriend. What it took to get there is a story worth telling.

Another autism story worth telling, though less marketable, is 2009's "Boy Alone: A Brother's Memoir," by Karl Taro Greenfeld. Late in the book, which describes the ravages of a family's life with classic autism, comes a depiction of Noah, now a man established in a satisfying, "recovered" life, including a fiancé — a happy ending.

But it is not real. The next chapter begins with a reproduction of a heartbreaking report about the 40-year-old Noah, issued by the state institution where he lives. His brother writes, "I dreamed that happy outcome … as therapy, as a study in what if, as an attempted answer to the great question: what if Noah could talk? What if Noah were normal? What if? What if?"

Owen's tale is a version of such a "What if?" while Greenfeld's is the current fate for many individuals with classic autism.

One take-away is to try to engage an autistic person around what he loves. Yes, depending on the individual's capacity, Disney might be an excellent tool to draw someone out. So can Barney, Thomas the Tank Engine, favorite TV shows, movies, books, toys, puzzles, activities or therapies. Individuals with autism at every point on the spectrum typically have intense, even obsessive interests. Whether those interests are a way of escaping a bewildering world, or a tool for communicating with it, or both, exemplifies the disorder's idiosyncratic nature. An individual's capacity to advance from beneath his autism depends on many factors, with a big hunk of mystery mixed in.

And, truth be told, a bit of luck.

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David Royko, a licensed clinical psychologist, has written about autism, children of divorce and music for publications including the Chicago Tribune, the Reader and the New York Times. His books include "Voices of Children of Divorce" and "The Chronicles of Ben: Adventures in Autism."

"Life, Animated"

By Ron Suskind, Kingswell, 358 pages, $26.99

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http://articles.chicagotribune.com/2014-04-18/features/chi-life-animated-ron-suskind-20140418_1_autism-printers-row-journal-owen

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A couple pics from the visit with Ben this Easter weekend...

Ben's Aunt and cousin sent an Easter basket for Ben, which he devoured one color at a time.

Spring in the air brings a spring to his step as Ben takes a walk Easter weekend.

World Autism Awareness Day 2014

Sometimes I’m struck by the irony that most of our world has become very, very aware of autism, except, from what we can tell, Ben himself. Or the thousands like Ben, with severe autism. Actually, we really don’t know Ben’s level of awareness of his different-ness, but every speck of behavioral evidence tells us he is, fortunately or unfortunately, clueless when it comes to autism, his own or in general. Maybe we’re wrong, which is even more disturbing – like an ALS sufferer locked inside themselves with no way to communicate their thoughts.

Nineteen years ago when Ben was diagnosed, we were all about the “cure.” We were members of Cure Autism Now (and how optimistic that name seems nineteen years later), which some years later merged with Autism Speaks. We co-hosted a fund-raising golf-and-auction event, compulsively searched the relatively new internet for scraps of hope for this grinding, devastating disorder, tried various types of interventions, and even a crackpot “cure” or two (anybody remember Secretin?). It wasn’t all for squat. Without the umpteen services and therapies he did receive, Ben would probably be in much worse shape. We love, truly, those who have helped him and those who tried even without any visible sign of success.

But here we are, with Ben approaching his 21st birthday, and while it’s better these days that Ben’s autism doesn’t require much explanation anymore, we’d be much happier if Cure Autism Now had succeeded.

But, of course, it hasn’t, not yet.

And for us, we’re afraid that that horse has already bolted from the blazing barn. We wouldn’t join an organization these days named “Cure Autism Now” even if that’s what we want. The organization we need at this point is Prepare and Provide for Severely Autistic Adults Now.

From what we can tell, Ben is not an unhappy young man. It can take a lot to keep him happy, but being busy with purposeful activities, jobs and tasks is one of the essential ways. His happiness depends on it.

But the world is not ready to keep Ben and his cohorts engaged. It’s a big job. We know that. Every parent and every family and every service provider and every therapist who has worked with Ben knows that. This is a mountainous climb into an immense new world of services. It will – does – require a ton of work, dedication, providers, and resources (AKA money).

In a perfect world, we could look at this huge need and say, “It will be taken care of. They will be taken care of.”

In a perfect world, Karen and I could leave this world not terrified of what Ben’s final years will be like.

In a perfect world, of course, there would be no severe autism in the first place.

But in our world, the work is just beginning.

Autism Awareness is a big step on a staircase where the top has yet to even become visible.

And for our kids, we continue to climb. We always will.

David and Karen Royko, Ben’s parents

 Virtual Road Raging – An Occasional Distraction from Autism
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After three years of bi- or tri-weekly (actually, weekendly) 12-hour round trips between Chicago and Cleveland, some very brief observations of rolling metal containers and the blood-pressure-spike-inducing cretins controlling them (myself included).

Part 1 of who knows how many.

The left lane of a highway is for passing, something to be done quickly. I don’t mean speeding up (unless the driver appears sloshed). Just keep moving and get past the truck and move back over and out of the left lane. But not the road cretin. While I am in the left lane to pass a truck, another car traveling at my speed moves in front of me to do the same. Fine, no problem and no sign of cretinhood -- yet. Then the car reaches the truck and, instead of maintaining speed, it SLOWS DOWN (and thanks to them, so do I, and everyone behind me, now tailgating my butt). Cretin car then simply matches the truck’s speed, only eventually increasing speed enough to sssllowwllyy inch past the truck, sometimes decelerating back down again to the matching speed, before finally finishing crawling past the truck. Then, ONCE PAST, cretin-car immediately speeds back up. This is not an occasional thing. It happens many times per trip. In fact, it’s refreshing to be behind a sentient human-operated car that actually keeps on keepin’ on while passing an 18-wheeler. I don’t believe its fear of the big, scary truck because, hey, wouldn’t they try to get past as quickly as possible? I dunno. I have applied my years of training and experience as a psychologist to this, only to remain flummoxed, but it does make me anticipate with pure pleasure a future with driverless cars.

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We had a terrific time with Ben this weekend, extended because he had no school Monday and he doesn’t like No School Days (always amazing to us!), so we stuck around. And his goatee continues to grow.

Ben waits, none too happily, at Wendy's, March 23, 2014

After almost 3 years of nearly flawless drives that managed to dodge the bad winter weather already legendary along our Chicago-to-Cleveland route, especially in this 2013/2014 season of shattered rotten records, I was afraid that the Wheel of Karma wanted to lay some tire tracks. The weatherpersons were predicting a "wintry mix" would follow us overhead the whole way. And the weatherpersons were right, but it wasn't bad.

As soon as Ben climbed into the car Saturday afternoon (it was another quick in-on-Saturday/out-on-Sunday visit), he said, "Drive fast" and opened his window. Ben's never met a condition he didn't like -- to walk in, drive through with windows open, or discuss ("Ben, what's the weather like today?" "Today is snowy" was Saturday's answer).

And Ben looks more like Maynard G. Krebs with every visit:

Ben gets ready to open the windows and "drive fast" and the car's grill indicates what we will be driving fast through.

I’m usually the hard-ass (marginally) when it comes to Ben and food (I’d get Ben a double cheeseburger at Wendy’s if I weren’t following him around the place while Karen orders…a triple; when he’s getting a cookie or candy bar, I’ll try to keep it to one while Karen is cool with him grabbing three, so we usually “compromise” – three).

As Karen went into a drug store to get some stuff, I told Ben as he perused the candy rack, “You can buy one treat.” However, he cracked me up enough that I let him fully indulge his love for (kind of) three things: A regular Reese’s Peanut Butter Cup 2-pack, a Reese’s Peanut Butter BIG Cup, and a bag of Reese’s Peanut Butter Mini-Cups.

I detect a theme.

Today we happened upon a blog posting by a waiter describing an encounter with a stressed Mom and her offspring with autism, and it was a terrific example of (a) a waiter who sounds like a genuinely good guy, and (b) the relatively supportive world we now live in, post-autism awareness. (To The Woman And Child Who Sat At Table Nine… By theantijared)

The “relatively” part was something we were reminded of Monday. Our routine with Ben when we honor his request to “go to Denny’s Restaurant” is, Order Immediately! The first host, hostess, waiter, or waitress who greets us gets our order immediately, always for Ben only (Karen and I don’t try to eat), no menu needed, so they can put it in even before we sit down. I didn’t say “before we’re seated” because Ben doesn’t want to sit, preferring to pace around the place, seeing what other people have on their plates and what’s going on in the kitchen. When he’s finally gravitated toward a spot with few if any other diners close by, we coax him into a booth and then try to keep him happy until the food comes – always a challenge and, frankly, often a real pain in the ass.

We have always had a good experience at Denny’s. They have been accommodating, taking our orders immediately, never requiring any explanation about Ben, and seeming to understand that we are trying to make this as pain-free an experience for everyone – us, them, and especially Ben, for whom waiting brings tortuous – and obvious – anxiety.

Sometimes when the lot is crowded around the entrance, Karen will go in while Ben and I park, adding extra time for the order to get going before we’re inside. That’s what we did Monday.

By the time Ben and I walked in, things had already gone bad. “Can I see a manager?” Karen was saying to the waitress who was interrupting Karen -- with what exactly, I didn’t catch as I was trailing Ben as he did his circuit through Denny’s.

I don’t want to be too hard on the place because we’ve been there many times with Ben (always at his request), and they are usually accommodating and helpful in getting us in and out, keeping Ben’s anxiety manageable, which is what makes it possible to go there in the first place. Not this time.

Karen walked in ahead of us and asked if we could sit in an empty section, and was told that we couldn't because there was no waitress working that section (which hadn’t been a problem on previous visits). She quickly explained that (inhale) our son is disabled with severe autism and has a difficult time waiting and her husband was parking the car and could she please order right away and we already know exactly what we want so we don’t need a menu.

The waitress said, or more accurately ordered Karen with an abrupt tone to “wait over there” while she cleaned a table.

The waitress cleaned a table between two tables filled with people. Karen again explained that we would need a table away from other people (the place was almost empty!) and could we please order right now, repeating that we didn't need a menu.

The waitress told Karen that no, she couldn’t (or wouldn’t) take the order yet as she would have to clean a different (clean-looking) table for us while trying to get Karen to take a menu when she simply wanted to order.

Ben kept exploring the dining room and peering into the kitchen, babbling in his usual way that alerts most of the world (at least the segment that can see, hear and think) that he’s not a typical person. We were seated at last.

And she finally started to get it. Ben had to wait longer than usual for his food, and he was anxious and trying very hard to control himself, but still hollered a number of times. The waitress assured us that nobody minded. Really? Well, BEN sure minded, and we minded that Ben was anxious and unhappy. She also had no idea of the bullet dodged because Ben didn’t have an aggressive meltdown.

As autism tales of woe go, sure, this is small potatoes. Teeny potatoes, maybe even shoestring potatoes.

And in a way, it’s not unhappy. It reminded us of the positive changes that have taken place in our world.

At Five Guys Burgers, for example, another favorite of Ben’s, they’ve come to know us. When the guys see Ben walk in, they throw an order of fries into a bag and hand it to us before we’ve even ordered so he can go to a table and happily (and quietly) munch, usually finishing as the burger arrives.

They get it.

And as I already mentioned, Denny’s, too, is usually fine. This time was an anomaly.

And that anomaly got stiffed. I don’t think I have ever done that before. Under regular circumstances, I’m a sucker when it comes to tipping (20 percent is my standard). When we’re some place with Ben, it goes up to 25-30 percent.

I didn’t want her to think we were simply jerkwads, so I wrote a longish note on a napkin, explaining our dissatisfaction, frustration, and the contrast with other visits, being specific, and saying that we usually leave 25-30 percent -- but not today.

Next time we go back, maybe we’ll see if zero percent and the napkin note provided the “teachable moment” that, we hope, will do more good than one tip. At the very least, she got what she deserved.

Ben waits for his food.

 Ben has a hard time as he continues waiting for his order.