David Royko Psy.D

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The Chronicles of Ben Blog Archive
May 2011 - December 2015

The Chronicles Of Ben Blog is now
Juggling Autism:
The Chronicles of Ben Royko - Severe Autism in Real Time

Click on the link and we'll see you there!

~~~

And here's the archive:

THE CHRONICLES OF BEN Blog
is all about Ben Royko, his family and Ben's life with severe autism. It's mainly written by me, Ben's dad, Dave Royko.
Beginning October 2015, most of my posts will be published simultaneously on this blog and the Huffington Post blog.


Click HERE for Ben Stories, including information about the eBook,
The Chronicles of Ben - Adventures in Autism

Prior to moving to this blog format,
earlier Ben Updates can be found:
HERE for Ben's arrival and first month at Monarch (May, 2011);
HERE for Ben's First Year at Monarch Updates;
HERE for Ben's Second Year At Monarch Updates;
HERE for Ben's Third Year at Monarch Updates (prior to 10/15/13).

Click HERE for Ben's gallery of pics from Cleveland.

Updates beginning October 15, 2013 are below, the most recent at the top.
And thanks for checking up on our big Benny boy!

The Ben Royko family

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Autism and Food

Posted on December 29, 2015 at 4:20 PM Comments comments (3)

Also on
Huffington Post


What better time than the holiday season to think about food, especially cookies, Christmas or otherwise.

Our severely autistic son Ben has never met a cookie he didn't like. Recently he spotted one on the ground in a park next to a trash can. It was obvious the cookie had been there for a while, half of the frosting worn away by rain or nibbling critters. Ben and I lunged for it at the same moment, except I didn't want to eat it. Yanking it from his grasping fingers, I tried to point out that it could make him very sick. But we're talking COOKIE here. If Ben had been born 30 years earlier, I might've sued Sesame Street for royalties owed for the obvious model he'd provided for Cookie Monster.

And this was a cookie fit for a monster. When I smashed it onto the concrete with full force, I learned that not all cookies crumble. Trying to pulverize it out of temptation, only a tiny bit broke off and the rest bounced. I had to throw the thing as far as I could over a fence, and he was pissed.

A bit of Benny irony: He had been looking for a book lost somewhere in the car, and we'd pulled over so he could get out and search more thoroughly. The parking lot was next to a deserted playground and once the book was found, Ben walked over to take a look and spotted the cookie. But, had we not pulled over, we'd have already arrived at our destination -- Ben's favorite bakery for cookies. Yet even knowing he would get some fresh cookies in five minutes, Ben was still mad until we actually got to the bakery. In Ben's world, every cookie's sacred.

There's severe autism for you. Food issues are common, complicated, quirky and often extreme. Ben, for example, might crave that rotten cookie, but push a grape his way and he'll gag. He once took a bite out of a dishwasher soap bar and didn't seem to mind. Poison Control assured us he might have a stomach ache but would be otherwise unharmed. His "tastes" encompass the edible, inedible and barely-edible, and he's far from alone.

"Been there with a chicken leg, fun like you wouldn't believe," says Bob Hughes, author and fellow dad. "As I walk along with Walker, I have to keep alert to discarded half-filled cups of Coke, half-finished fries, half-finished anything."

Many of our autistic progeny view the ground as an enormous dinner plate. For Ben, if it falls on the floor, it's his. ("Good thing our reflexes are still quick!" says Kathi Yearian, another parent with an autistic son of similar age and tastes.) Then again, Ben feels that any and all food anywhere is rightfully his.

It's not a minor matter. Ben's 22, legally an adult, living in a group home. Regulations protect the residents' civil rights to choose what, when, and how much they can eat. For any dietary restrictions, a doctor must be on board and provide specifics in writing.

Even if he hates them, Ben needs restrictions. Otherwise, and we saw this before he left home at 12 for a residential setting, he would be morbidly obese with no apparent upper limit. If you want to see our fear, take a look at the restaurant scene from Monty Python's "Meaning Of Life." The patron is so immense, a final after-dinner mint makes him explode. Except for the explosion, that would be Ben if he lived his life with no external dietary controls imposed. His doctors agree.

Ben's requests for food are almost constant, his satiation point unknown and maybe nonexistent. Chewing his last bite of a double cheeseburger and fries from 5 Guys Burgers, Ben will say, "Go to Wendy's" before swallowing.

Whether or not Ben officially has Obsessive Compulsive Disorder, obsessions, compulsions and autism often are tightly woven and integrated like threads of a silk sari. Another nightmare of severe autism, it's a big part of what drives Ben in so many ways, especially regarding food.

And like most aspects of autism, we don't know why. Genetics? Environment? Maybe his anxiety surrounding food is connected to his move into a residential program a decade ago and the restrictions that followed. Or maybe not.

Ben's internal struggles make the world a place with dangers and stresses the rest of us really can't imagine. A discarded cookie becomes an intestinal land mine.

Ben's twin, Jake, as he often does, viewed the ordeal from a slightly different angle, deflecting any possible blame from his brother to the real transgressors.

"It's another good reason why people shouldn't litter."

So please world, don't leave cookies out for Ben to eat, especially on the ground in a park.

For the record, Ben disagrees.

Ben waits for his order

Autism, Communication, Books and Cartoons

Posted on December 18, 2015 at 11:00 AM Comments comments (0)

Also on
HUFFINGTON POST


This might sound familiar to regular visitors since I've written about things like Ben's "juggling" before - but not for Huffington. A little bit of lighter stuff for the holidays -- and I hope they are good ones, or at least as decent as possible especially for those grappling with severe autism and other disabilities. Holidays are different for us.

---
In the old, dark Bettelheim days of autism, it was assumed by many that those with the disorder didn't desire communication. We've since come to understand that a lack of ability doesn't necessarily reflect a lack of desire.

But it likely demands, at the very least, a different approach. Some discover analogs. Owen Suskind, for example, is a high-functioning autistic young man who has used dialogue and characters from Disney cartoons to express complex thoughts and emotions, as described beautifully in his father's book, Life, Animated.

However, this isn't just for those with Asperger's or those considered high-functioning, as my own son, Ben -- on the opposite end of the spectrum -- has shown us, for better or worse (though really, it's mostly better).

Ben is very verbal, but perhaps paradoxically, not very communicative, verbally. Most of his vocalizations are quotes from movies and books or things others have said to him ("We have to wait" is usually quoted unhappily). Often they seem random or free-associative, but then a word or phrase will shoot by and we realize it's related to something in our immediate environment or that Ben wants. And Ben always wants food.

It's no surprise that a lifelong favorite book is Eric Carle's The Very Hungry Caterpillar.

I've occasionally referred to Ben as the title character, with his unquenchable appetite, chewing through one delicious morsel after another, each leaving him still hungry. No doubt, Ben relates to that bug.

Recently, Ben made an (as always) impassioned request for "Luna Bakery," a favorite of his. It came before we'd even exited Five Guys Burgers. We told him OK, but it would be a little later. Karen dropped us off to run an errand as Ben and I headed to our hotel room.

As we exited the elevator, there was no question how he was using Eric Carle. In a slow, deliberate cadence, Ben quoted the repeated refrain: "But he was still hungry."

Once in the room, I sat down and checked e-mail as Ben headed to the tray of fruit on the table. When Karen got back, I noticed it was empty and asked how much fruit we'd had.

"Three pears and five bananas."

Ben and Eric Carle hadn't been kidding.

Another oft-quoted Carle book is "The Very Quiet Cricket," which has always struck me as incredibly poignant, being about a young cricket who keeps trying to communicate, all in vain until the last page. Ben will say to us, "The very quiet cricket," which is my cue to say, "He rubbed his wings together, but nothing happened. Not a sound." To which I add, "Poor little cricket," and he's happy.

Some of Ben's "reenactments" can be for recreation more than communication.

There's a Richard Scarry video depicting a gorilla trying to carry a huge stack of books only to stumble and see them go flying, as another character says, "Juggling!"

Who says people with autism don't learn by imitation?

We'll be in a room together and, "Bang!" A book will whack the ceiling and Ben may or may not say, "Juggling!"

We'll be walking through a parking lot with Ben behind us (he's always loved watching peoples' heels), and we'll hear a book fluttering to the ground. "Juggling!"

In the car, a book will slam the ceiling. "Juggling!"

We'll be in a store, and I'll hear the "Bang" and cringe as a book almost whacks another shopper on its descent. "Juggling!"

Eating in a burger joint, we'll hear the whoosh-flutter, hoping it lands across the dining room on the floor and not on someone's fries. "Juggling!"

A metal cage protects the ceiling light in his room which has been busted by "Juggling!"

We always lecture him.

"Ben, you'll hurt yourself!" "Ben, you'll hurt someone else!" "Ben, you'll break something!"

And maybe the only one that would really matter to him: "Ben, you'll lose your book!"

Recently, it finally happened. We were on a highway with the windows open and I heard a brief flutter of paper. By the time Karen and I looked at him, Ben was sitting with a hand in the air and nothing in it. His library now had one less book. And he was guilty of littering.

"See Ben, the book is gone now! You juggled it out the window!"

He smiled and found an alternative in his ever-present big bag o' books.

An hour later, back in the hotel room...

"Bang!"

~~~

Ben on a birthday filled with books and videos - he can never have too many.

~~~~

Ben is Home

Posted on December 16, 2015 at 12:35 AM Comments comments (0)

The whiteboard (inserted upper right) lays out the terms in Ben's house, at least for Ben:
"1: Hang Two Ornaments on Christmas Tree, then, 2: Get a Cookie." Talk about incentive.
---

The day I realized Ben was autistic, we sat on the floor as he stared up with a wide smile at the spinning ceiling fan. I thought to myself with a mix of panic and crushing despair, “Anything I supposed or imagined about Ben’s, heck, all of our family’s future has completely vanished. A year, five years, ten years, twenty years, fifty years, what will it look like?”

We have our twenty year answer: It looks like relocation. Goodbye Illinois.

As 2015 drifts into the past, the last details -- of many -- are being finalized for Ben’s permanent change of residence. For the past nine years, he has lived out of state, the huge costs completely covered by Illinois, and if there ever was a tacit admission of absolute failure to adequately care for your own, there it is.

The plan was always for Ben to return, to rejoin the family, friends and support network he’d temporarily, we thought, left behind. Illinois was home – his and ours.

Like it or not, Ben won’t be returning. In time, Karen and I also will become Illinois expats.

Twenty years ago, retiring from one Midwestern snow-belt state to a different one would not have been among our hopes and dreams. But hey, what’d we know?

Illinois forced our hand. The adult services provider who expressed the most potential interest in Ben was in southern Illinois, five hours away.

Ben would have been their very first client with autism.

Developmentally, in many ways, Ben’s like a toddler, and he would not easily be able tell us if he were being mistreated, neglected or abused. And like a toddler, when he has a tantrum or gets aggressive, it can be bad. They are the kinds of situations that have brought injury and death to guys like Ben in places that don’t know how to deal with severe behavioral issues.

“I can’t guarantee someone won’t get hurt in a group home” is what a professional involved with Illinois’s system told us. We know there are no guarantees with anything, but that she felt compelled to point it out says plenty.

And Ben would be their autism guinea pig.

What would you do?

Ben now lives in a group home and attends an adult day program run by an organization we know and trust. The well-trained staff is educated, committed and compassionate. Ben is busy, safe, engaged, appreciated, and happy.

Karen and I have rented an apartment a mile away, for our every-other-weekends with the big guy.

I could write volumes about the crisis of autism and adult services, but I don’t have to since Amy Lutz’s piece in the Atlantic covers, beautifully, many of these issues: Who Decides Where Autistic Adults Live?

This problem is only getting worse as the autistic population hits adulthood. I don’t have all the answers, but I’m pretty sure it shouldn’t require permanent relocation to another state.

But hey, what do I know?

Ben's bedroom wall, decorated by his house's staff.

Bearded Benny Baking

Posted on December 8, 2015 at 10:25 AM Comments comments (0)

Michelle helps Ben bake cookies as he demonstrates a degree of delayed gratification we never could have imagined! Thanks to Ben's house for the pic. And notice, as with every picture ever taken of Ben, one hand is holding a book (and probably not a cookbook). Ben owns many books, and he is constantly swapping them out and he always seems to have a specific book in mind when he seeks a replacement. He's a man of letters. (And cookies.) It's his version of a security blanket. Ben used to carry multiple objects, sometimes trying to haul a stack of toys and books more than half his height. His first residential placement in Oconomowoc weaned him to his one-book-at-a-time regimen, which he might continue for the rest of his life. One thing I've written about before is what Ben calls "Juggling." In a favorite video, a gorilla is carrying a stack of books when he slips and falls, tossing them into the air. Another character says, "Juggling!" We can be walking through a parking lot when I'll hear something flutter down from above -- a book Ben has flung. It's why his bedroom's ceiling lamp is busted. Same thing in a store or anywhere else, really, where the gentle flutter comes only after a loud "Bang!" on the ceiling and the happy cry of "Juggling!"

Paris

Posted on November 15, 2015 at 8:55 AM Comments comments (0)

Not that anybody needs any personalization to reel at the horror of the Paris insanity, but I just read that attackers targeted the disabilities section at the rock concert, blasting away at people in wheelchairs. If Ben had been there, that would have been his section. Ben's twin brother, Jake, is a long-time death metal lover and concert-goer, and if he had happened to be in Paris, there is a great chance he would have been at the event. I am trying to shake images from my mind. No, this isn't a nursery school shooting, or a grammar school shooting, but for parents, whether our sons or daughters are five years old, or 45 years old, our children are always that, our children.

And seeing headlines referring to "extremists," I wish the journalism world would more accurately refer to them as "nutbag mass murders."

Spending days with Ben actually insulates us from the rest of the world's tragedies -- he always requires full attention. So yesterday we drove over to western New York to see how Lake Erie in NY compares to Lake Erie in Pennsylvania and Lake Erie in Ohio. No Homeland Security required.


Our Son's Love of Music Shines Through His Severe Autism

Posted on November 10, 2015 at 4:40 PM Comments comments (0)

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HUFFINGTON POST


A few years ago, Ben, our son with severe autism, got a chance to meet one of his favorite musicians -- or more accurately, meet the man responsible for creating some of his favorite music. We now know there's a big difference, and this "meeting" helped us understand our big guy a little better.

If you're unfamiliar with Bela Fleck, he's not a typical banjoist, having received Grammy nominations in more categories than any other musician (and won a bunch, too).

Ben's been a Bela Fleck fan forever. We know when Ben's a fan of someone because he either (a) requests them a lot, and/or (b) doesn't immediately "request" (anxiously demand) something else when it starts to play.

There is no way Ben could sit through a concert, even if it featured Bela, so he didn't come with us to the Cleveland Orchestra performance of Fleck's Banjo Concerto. After hearing this engaging work, Karen and I had a chance to chat with Bela (we've become friends over the years) and his wife and musical partner, Abby (Abigail Washburn). When we described Ben's love for his music, Bela offered to play for Ben if we wanted to bring him up to their room the next day.

"Ben, we're going to visit Bela Fleck!" I announced when we picked him up. The lack of any visible reaction was expected.

Ben seemed OK when we got out of the car at the hotel, but walking into the crowded lobby, Ben's voice boomed an anxious holler, bringing all eyes to us, nothing unusual for Ben outings. Bela and Abby came down to meet us, and up we went to their suite.

Luckily (or actually, knowingly), Karen brought scones, theoretically for all of us. Ben gobbled every one, chewing while we chatted. His single contribution to the conversation: "Go to the car."

As Ben finished the scones, Bela played for him.

How many people get a private recital by a favorite musician? But even this was no match for autism.

It was as if Bela wasn't there.

Louder and angrier, Ben demanded an end to this ordeal. "Go to the car!!!"


So 15 minutes after arriving, it was time for quick good byes. As the elevator doors were closing, Ben finally said something related to our visit.

"Bye Abby." Ben's always had an eye for a lovely lady.

Odd as it may sound, this experience brought to mind farm animals. Ben talks about them frequently and about farmers, tractors, and all things farm-related, but especially pigs, cows, horses, chickens, and goats. He loves them in books and on video. Bring him to a farm, however, and he might glance at one of the animals as we walk by. Or not. "In person" (or "in live animal") is not the same as in a book. To Ben, the book's much better.

It provided us with another little Benny epiphany (they never end). Music, Ben loves. From where it comes, or from whom, or how it's made -- important info for most typical music lovers -- might mean nothing to him. Sam Bush or Beethoven, Nickel Creek or Thelonious Monk, Brian Eno or Mary Poppins, Bela or Mozart -- the names attached to his favorites might be nothing more than labels. Even if he does connect a person to their music, it is not something he seems to care about.

But Ben sure cares about the music. As with his language, where the receptive piece (language input, written and spoken) is much stronger than the expressive (talking or typing), we know plenty is getting in there. What happens then, due to Ben's autism, can seem like a Black Hole -- stuff goes in, and often, that's the end of it, unless you can catch the clues.

Sometimes they are obvious. Before Ben's autism days began, certain discs, like Peter, Paul and Mommy, would instantly transform agitated crankiness into a silent, mesmerized stare into space while sitting in a highchair eating his mashed meals, more than two decades ago.

Two days ago, driving in the car, at his request we played Schubert impromptus, and Ben entered the same listening zone, staring ahead at nothing.

He knows what he likes. Later the same day, the Beatles weren't doing it for him, and he "suggested" the album Monk's Music instead, another favorite - of all of ours. Ben's requests truly can be music to our ears.

So if Ben has a savant "skill," it's his appreciation of music. Jazz and classical and rock and bluegrass and, oh yeah, Raffi (nobody's perfect) - Ben loves it all and would likely agree with Duke Ellington who, when asked about various types of music, said, "There are two kinds of music, the good kind and the other kind."

It's up to us to nurture that love, and taking it a bit further, maybe even help him connect a little more to the outside world through it. If Ben can never attend a concert, it's not too much to hope he could someday at least enjoy a brief backstage visit.

Maybe one that begins with: "Hi Abby. And Bela."

 

~~~~~~~~~~

 

 

http://www.davidroyko.com/
http://www.davidroyko.com/benstories.htm (autism)
http://www.davidroyko.com/musicrambles.htm
http://www.davidroyko.com/publishedwritingmusic.htm


Ben tries out a piano on a street corner dropped off as part of the "Play Me, I'm Yours" art installation that was adorning Cleveland's streets, July 29, 2013

 

Photos of Ben playing the piano, and Ben with Bela Fleck: David Royko

Another Casualty of Severe Autism: Sex

Posted on November 5, 2015 at 12:10 AM Comments comments (1)

Also on
HUFFINGTON POST


Sitting on a crowded commuter train, looking at a recent photo of Ben as he reaches for the camera, all of a sudden I am seriously struggling to hold back tears. That sweet and handsome face that expresses his even sweeter personality forces me into a mental place I try to avoid -- thoughts of what a great life Ben could have had. I lose the struggle. My face is wet.



 

 


In many big ways, Ben is doing great, and we naturally and ecstatically embrace all of the good stuff. But really, he's doing well only in a relative sense. Ben's had a huge advantage in having a true supermom (like so many moms to autism), to the point where it became her career, working as assistant to a special needs attorney. Because of Karen, Ben has been surrounded by good-to-great professionals, semi-professionals and interested parties since autism started strangling him before he turned 2, more than 20 years ago. Humpty Dumpty never had a supermom. Prying the disorder's vice-grip from Ben's throat has been a perpetual struggle and one that we expect will never end.

Beyond that, as much as everyone in his life cares about him -- and he's lucky to have such a cute, lovable personality that many people who work with him truly love the guy -- Ben lives with obsessive compulsive disorder, not an unusual comorbidity with autism (around a third of autism diagnoses come with a side dish of OCD), with the accompanying intense anxiety. If Ben is upright, he's probably pacing, in part to burn off some tension. When he occasionally acts out aggressively, he's not being a jerk, he's just frightened, and unable to express or handle it.

Now imagine all the things Ben will never experience.

Ben is 22 years old, physically normal and healthy, and active as heck -- he could walk for hours at a pace that requires you to practically jog with him. And if he lives to be 100, barring a miracle, Ben (and please pardon my crudity) will likely never get laid. It's estimated that only 10 percent of adults with autism spectrum disorder have had a sexual relationship. I don't think I'm alone in feeling like that is a very big loss, not even considering the emotional pieces of sex and love and companionship. Just the sex. That's enough to contemplate.

You might be thinking, oh, someone like him is clueless, doesn't really get it, or he doesn't need that, or doesn't have the same urges. Wrong, plain and simple. Most of us simply don't want to "go there" when we think about adults with severe disabilities. Autism usually means that, no matter what developmental delays are going on, it's uneven. Ben, sexually, is a fully developed young stud. His physiological reactions have indicated to us in no uncertain terms that he is hetero. And while he's never done anything "inappropriate" with someone, and no, I don't think he'd really know what to do in a mechanical sense (just like many other virgins), it doesn't mean things don't stir and swirl inside of him. Powerfully.

So add sex into the stew of all that Ben will miss, just to pick something universal that most of us would miss even if we never experienced it. Not knowing what you're missing can go a long way with Ben for some things, and because of his condition, many of the things he is missing he has zero clue about or could care less either way. Sex, however, comes with an internal drive that makes you know you're missing something, even if you don't "know" what it is. For Ben once again, autism has no upside.

---

For more information: Sex Education, Sexual Health, and Autism Spectrum Disorder, by Rachel Loftin and Ann Hartlage; Pediatrics & Therapeutics, 2015.

 

Men With Autism Are Not the Killers, They Are the Victims

Posted on October 16, 2015 at 11:20 AM Comments comments (0)

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HUFFINGTON POST

 

Guns, god and abortion are three issues I rarely argue about any more because it's a waste of time. If people are in agreement about any of those, they're preaching to their own choirs. As for those with opposite views, have you ever had an argument about GG&A that changed opinions -- either theirs or your own?

So we are not particularly interested in wading into the gun debate that has been raging in the U.S. for as long as I can remember. Autism is our family's primary issue.

But guns are an autism issue.

And no, I am not referring to the twisted and increasingly predictable cry of, "Did he have autism?!" that we hear after our daily dose of mass shootings. Wrongly scapegoating people with autism has become routine. (See Andrew Solomon's New York Times op-ed of Oct. 12 for a clear-eyed look at this.)

Our concern comes from the other end of the pistol.

Our son, Ben, has severe autism, is 22 years old, and lives at a residential program in a different town from us.

During a visit with Ben, I was taking care of something in the lobby of our hotel while Karen, Ben's mom, headed to the elevator with the big guy.

As Karen describes it:

"We were waiting for the elevator and Ben was pacing around happily like he usually does. We were in room 207 on the second floor, and the door to Room 107 was ajar. I looked away from Ben for a moment just as he pushed open the door to 107 and started to go in. He was either just curious or thought it was our room. At the same time, a man -- he looked to be around 70 -- was walking down the hall and saw Ben going into what was apparently his room. The man became agitated and ran down the hall yelling, 'Hey, don't go in there!' I quickly offered, 'I'm sorry, he's disabled, he's no threat,' which didn't seem to calm the man down as I ran to get Ben out of the doorway. When I faced the door I could see a woman, probably the man's wife, lightly pushing Ben out. Ben was being gentle about the whole thing. She and Ben both had smiles on their faces -- she could see that Ben wasn't a threat. The man hadn't seen that."

End of incident, no big deal, right? It was a routine occurrence in the life and times of our big Benny boy, and no harm done.

Except I couldn't help thinking about Mohammad Usman Chaudhry. Or David Levi Dehmann. Or Steven Eugene Washington. Or... the nauseating litany of men wrongly killed due in large part to their autism grows longer almost by the day. Google those names, or try "man with autism killed by police," if you have the time. You'll need plenty because there are plenty of guys exactly like Ben who have been killed by clueless people, law enforcement or otherwise. More cops are being trained and taught about autism and these tragedies still happen with depressing frequency.

Citizens are not being trained and in fact are increasingly worried that "autistics" are dangerous by nature. And many of these citizens are armed.

Ben is six feet, three inches tall, acts irrationally, and can seem threatening, especially to someone unaware of his condition. He can't effectively communicate with strangers.

And he is always unarmed. Ben is not a significant threat to anyone in the world.

The man in Room 107 saw Ben differently -- a big man sneaking into the hotel room his wife was in.

What if the man had had a gun on him? What if his wife hadn't realized Ben was harmless, and screamed? What if she herself had been armed?

What would you have done?

For Ben and his cohorts in autism, an armed world is a more dangerous world.

Huffington Post

Posted on October 7, 2015 at 2:45 PM Comments comments (1)

I'm happy to be, as of today, one of Huffington Post's bloggers, starting with my response to John Robison. Now I'm even harder to avoid!

Our Autism

Posted on September 30, 2015 at 3:20 PM Comments comments (0)

David Royko
September 30, 2015

In response to John Robison, Psychology Today, “Does Neurodiversity Whitewash Autism?” (Sep 29, 2015)

https://www.psychologytoday.com/blog/my-life-aspergers/201509/does-neurodiversity-whitewash-autism

~~~

As the old saw goes: Write what you know.

John Elder Robison does that, beautifully. Even when I disagree with him, Robison is, hands down, my favorite writer with autism, describing it from the inside with skill, insight and humor.

Today Robison is writing about something he does not know: My son Ben.

Ben also has autism. When I write about Ben and his autism, I am an expert. Because of the vast changes in the meaning of the word itself since Ben was diagnosed in 1995, I usually refer to his condition as “severe autism.”

I would never speak for Robison or his experience. I want to learn from it. He provides some insight into our own son’s internal world. At least, we think he does.

But Ben, a young man at 22, can not express himself like Robison can. Far from it.

I am, absolutely and guilty as charged, one of those parents who loves my son and hates his severe autism.

I’m not simply, as Robison labels it, blowing off steam when I say that Ben’s autism is a destructive disorder that we hate. How could we NOT hate it?

It has kept Ben from being able to live with his family, even in the same state, since he was 12, because his needs are so great. After decades of dedicated professionals working with him, Ben’s life remains severely restricted. He requires supervision 24/7 and we have seen nothing to suggest that will ever change. Ben must depend upon others for, well, almost everything. When his mom and I are on our deathbeds, that dependence will remain and it terrifies all parents like us.

For Ben and many like him, it is not a simple matter of Intellectual Disability and a lowered IQ.


In fact, Ben’s basic intelligence is probably much higher than he can communicate. The communication problems stemming from his severe autism (and yes, he’s been exposed to many alternative communication devices and techniques, some helping to a point) only add to his anxieties, which are at the core of his functioning. Whether it's his frequent pacing, or occasional aggressive acting out, it all comes, at least in part, from fear and anxiety and being unable to express or handle it. Feeling tense and anxious from the moment your eyes open in the morning, all physiologically driven, layered upon severe difficulty understanding so much of what we take for granted in our minute-to-minute lives – I hate to even imagine.

But we have had to do more than imagine it. We have seen it, felt it, heard it, and battled it his entire life. Not him -- It. It is the enemy of our son. It is autism.

I would never dream of telling Robison or anyone who feels as he does that his autism is a disorder whether he likes it or not.

Ben’s severe autism is a destructive disorder.

As an analogy, Robison mentions divorce and that “parents are told not to criticize the ex-spouse in front of the kids, because those kids are half him (or her),” and that telling those with autism “that you hate it is just as corrosive as saying you hate our other parent.”

In my work as a psychologist and, for the past 25 years, director of a large court system’s child custody and divorce mediation services, I’ve given the same advice literally thousands of times, and I see a different analogy between these worlds. Criticizing the other parent in a divorce is not the same as criticizing autism. If using divorce as an analogy, autism is not the other parent, autism is the divorce itself. It is severe autism that is causing Ben’s misery, not our opinion of it. A person never “chooses” to have autism, even if they have a life that successfully accommodates, or is even improved by it, and a child virtually never chooses divorce for their parents even if the divorce ultimately reaps positive benefits for everyone involved.

Robison believes that “If you’re not autistic, it’s not yours to hate or say.”

I get that, if one does not consider autism a disorder, but a difference. To hate somebody or something for simply being different is vile.

Ben’s severe autism is also vile. For all it has destroyed, hating it is not.

Hating it is natural.


THE AWARD-WINNING BEN ROYKO!

Posted on September 28, 2015 at 10:05 AM Comments comments (0)


MedWish International is an exceptional Cleveland-based non-profit dedicated to retrieving, recycling and reusing medical supplies (and what better city for that?) for countries that desperately need them. Monarch Center for Autism and MedWish work together (as MedWish does with a number of organizations) to provide vocational experience for Monarch denizens like Ben.


At the MedWish fundraising auction Saturday night, Ben received an award (in absentia -- he would have HATED being there!) for his work at MedWish! Ben had progressed so quickly, he's doing Quality Control! And they misspelled his name on the plaque (a missing "n") which is a blessing in disguise -- we'll hang the corrected one (when it arrives) on his wall, and we get to keep the flawed one for our wall. CONGRATULATIONS BEN!!! And a thousand Thank Yous to Gretchen at Monarch for helping him achieve it! It is hard to describe the delight we get from this.


Before the doors opened Saturday night. The MedWish event centerpiece represents the countries the organization has assisted with recycled medical supplies, September 26, 2015.

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Soaking up the love at Saturday's Medwish awards. Thank you to Gretchen for the pic!

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And a couple more pics from the weekend...


 Ben and Karen at Edgewater Park for a "picnic," which lasts as long as it takes Ben to inhale a couple of peanut butter sandwiches, which is why we're at a bench and not a blanket - not enough time to spread it out! Or as fellow autism dad (and writer about it) Bob Hughes has described it, "Flash Picnicking." September 26, 2015.

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Ben checks out my favorite anti-Semitic pr*ck, Wagner (hey, the creep wrote great music for a pre-Nazi d*ckhead. Or dichhead?) at Edgewater Park, September 26, 2015.

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 Either Ben mistakenly thought the camera was being handed to him, or he's just tired of the paparazzi. You know how award-winners can be...

Back 'n' Forth

Posted on September 7, 2015 at 9:00 AM Comments comments (0)

The plan was, yesterday, Ben heads from Cleveland back to Chicago to see family that he hasn't seen for three years, we spend the night in a hotel, and come back to Cleveland today. (We are STILL in the process of working out Ben's adult services residential situation, but can't really talk, er, write about any of it yet.) Ah, autism! Soon after seeing everybody, Ben was ready to get back in the car and come back to Cleveland. It was becoming clear that it could get bad. So, time to cut our losses. By 5:30pm, we were back in the car, Cleveland bound. But since we got back after midnight, technically, we weren't back until today after all! Always look on the bright side of life. And the true bright side: Having spent 12 hours in the car yesterday, it might have been Ben's favorite day EVER.

But it might've gone better if we'd done it differently. We saw the trip in our own naturally neuro-typical way. Ben would love to see everybody, all the people he's been closest to, and the kids who'd grown so much since the last time he'd been around them. We thought he'd like being surrounded, saturated by the love.

What he did feel, we could see, was overwhelmed. He smiled at his Bubbe, aunts, uncles and cousins, gave out some requested hugs, and soon headed upstairs to look around, out of the family fray. And as he went from bedroom to bedroom multiple times, looking at bookshelves, undoubtedly wondering where the old books were, he kept me right next to him the entire time.


We also had not really thought through how Ben himself was thinking this through, how he was anticipating his first visit back to the homestead in 3 years.


And in hindsight, how could I have been so dumb? Last time Ben was here, we were still in our own home, HIS home. He'd slept in his old bedroom on his own bed. He bopped around the house and looked in every closet. He was ready to head back the next morning, a day earlier than we'd hoped, but he'd enjoyed the experience.


So of course, Ben was expecting us to take him to HIS house. And when we left his Bubbe's house, I'm pretty sure he thought we were finally going "home" instead of some hotel.


He didn't like it. Even after a requested DVD was spinning, his agitation and vocal volume rose. When he started hitting himself in his head - which we rarely see anymore - Karen and I knew where this was headed.


If we'd been able to re-start the whole thing, an honest social story about our move into Bubbe's house and away from the house he knew would have been the place to start. Instead of a bunch of family being there at once, a couple at a time would have been better. None of that would have guaranteed an overnighter, but at least it might have made for a better day for Ben. Or at least less traumatic.


So after his second 6-hour drive of the day, we exited the highway at half past midnight, and Ben said, "Go to Wendy's."


Any lingering trauma was over. Ben was back to normal.

Ben chows down surrounded by family yesterday.

Sleep and Autism

Posted on August 17, 2015 at 1:35 PM Comments comments (2)

FINALLY FINALLY FINALLY, some substantial information/research insight into the nightmare of sleep(lessness) and autism. It's a start. Sleep problems are one of those parts of family life with autism that many parents will tell you is one of the most nightmarish (no pun intended) aspects. Karen went almost 13 years without one - literally, not ONE - solid night of sleep that added up to more than 5 hours (at most, usually less) and even those few hours were interrupted. Sleep deprivation hurts health, both physical and mental, and makes everything much worse. And this was Every. Single. Night. For 13 years.

http://sfari.org/news-and-opinion/news/2015/body-clock-genes-may-set-pace-for-sleep-issues-in-autism

Benny Boy

Posted on August 17, 2015 at 11:10 AM Comments comments (0)

A thousand "thanks" to Sarah in Ben's cottage for this one, of Ben surveying his Duplos last week. Has there ever been a cuter smile?

80/90/100 in the Santa Fe

Posted on August 11, 2015 at 10:10 AM Comments comments (0)

A bit over four years ago, knowing we were about to start driving between Chicago and Cleveland a couple of times each month, we traded in our old Hyundai for a new Hyundai. It served us well, and last night, we traded in our (now) old Hyundai for another new Hyundai.

We don’t get attached to cars. In fact, since we usually hold onto our horseless carriages until they’ve de-evolved into trembling metal melanges awaiting a merciful junk-yard afterlife, we’re glad to see them go to auto heaven, or if it had been a bad, ill-behaved vehicle, car hell.

But as we traded it in last night, as the various transferrables were moved into the new-born buggy, both of us wistfully looked it over one more time and actually felt some pangs.

It’s been our second home for four years, considering the number of hours we been in it. It has carried us back and forth between Illinois and Ohio on Interstate 80/90 100 times. It might look like a 4-year old, but it has the odometer of a retiree at 159,000 miles. We’ve spent more time with Ben inside of the Santa Fe than anywhere else.

But as we enter a new phase with Ben and our family’s life (and more about that soon), we must bid fond farewell. We hope the next owners appreciate you as much as we did -- at least until you de-evolve into a trembling metal melange awaiting your junk-yard afterlife.


The 2011 Hyundai after a nice drive through a blizzard.

 

Don't Ask

Posted on August 10, 2015 at 1:15 PM Comments comments (0)

Starbucks people are just trying to be friendly, I know that.

Even for a Monday morning, I was feeling more tired than usual. The chirpy barista clearly wasn’t.

I hate it when strangers behind counters ask me unnecessary questions.

“Are you a guitar player? Are those from playing guitar?” She was asking about the bandages on three of my right-hand fingers.

I’ve gotten used to giving meaningless little generic answers to the usual barista questions about, say, weekends. “Have any plans?” gets “Some, thanks,” not a description of the every-other-weekend drive to and back from Cleveland and the autism-centered activities once there. That would be an actual answer.

But why would anyone ask a customer a question about bandages, unless you’re a health professional and your customer’s seeking treatment? So I just said, without any real inflection, “Oh, don’t ask.” But instead of simply not asking, she wanted to chat about bandages or guitars, and went on with, “Oh, I was just wondering because…” before I finally said, without any real emotion, “I have a severely disabled son who sometimes injures me.”

“Oh, I’m sorry. I didn’t mean, I just…” she started to stammer, her voice quieter.

I just said, “No problem.”

And hopefully I’m done with questions about my weekend, at least from her.

BenJammin'

Posted on August 3, 2015 at 8:40 PM Comments comments (0)

We're still some weeks away from Ben's adult placement situation being finalized (and my being able to write about it). For now, he is still in his Monarch cottage in Cleveland on a limited, temporary basis.

But in the mean time...


Ben isn't non-verbal, but functionally, he is minimally verbal. He can make simple requests or express something in a few words, almost never a complete sentence.


But for a minimally verbal guy, Ben is extremely vocal. Most of what he says are lines from favorite books and videos ("He did not see her;” “For some hay,” those last two being lines from Are You My Mother?), or favorite characters' names ("Kermit!" "Spot!"), or things he likes ("Numbers!"), and catch phrases like, "Anne is coming," which stretches back more than a decade and refers to one of his favorite therapists. Often, especially with things he really likes, Ben will append, "…song," as in "Five Guys Burgersong!" It seems to reflect how much he loves music.


Recently, "Monk's Music" was playing on the car stereo, which he requested as "Monk in a wagon," since the cover depicts Thelonious Monk in suit and tie sitting in a kid's red wagon. He loves the album, which is a jazz masterpiece with long tracks packed with brilliant improvising.


And then it hit me -- Ben is an improviser himself.


When he belts out some of his song fragments, they are often altered. Some words are repeated (“Arthur, Arthur, Arrr-Thurr!"), while others get new pronunciations. Letters are replaced (“Arthur!” becomes “Arpoor!"). Phrasing is stretched (“Sally the Caaaaaaa-Melllll!"), while the music itself undergoes big shifts in dynamics and emphases.


And we have a new favorite. This past weekend in the car, Ben, with gusto and to the tune of “Oh My Darling Clementine,” belted out:


Bubble Bubble;

Bubble Bubble;

Bubble Bubble,

Bubble Bub(ble).

Bubble Bubble,

Bubble Bubble;

Bubble Bubble,

Bubble Bub(ble).


Karen and I cracked up. Then we belted out "Oh My Darling Clementine." Ben smiled big time when he realized we knew exactly what he was up to. Then he said, "Bubble!"


So Karen and I sang his "Bubble" version.


And Ben just LOVED it.


Ken Nordine is the master of something called Word Jazz.


He and Ben should jam.


Sunset

Posted on July 30, 2015 at 9:15 AM Comments comments (0)

Happy 22nd Birthday Boys! Ben remains in Ohio while we continue to work on the rest of his life. Nothing to report yet, but we're busy.

July 29, 2015 - The sun sets on Jake's and Ben's 21st year at a rest stop as Karen and I head to Ohio on 80/90 for Ben's Cleveland celebration tomorrow.



And a not-too-recent pic of Jake (looking up) and Ben.

Week the Last

Posted on July 22, 2015 at 10:45 AM Comments comments (0)

Today, Ben begins his final week of being 21. All the effort and action so far has lead to nothing yet decided, nothing known. It feels like mountain climbing in the middle of an avalanche.

Denial Prefered

Posted on July 10, 2015 at 9:35 PM Comments comments (0)

At this moment, Monarch, Ben's home for the last 4 years, truly seems like heaven to me. And being here, watching Ben lope around his cottage in confident, comfortable happiness, surrounded by his surrogate - and wonderful - Ohio family, on our last visit (next time we are here it will be to bring him back to Illinois), feels like a living hell. No words.

Ben at the sink in his kitchen with Karen (back) and three of his staff as we wrapped up our final "normal" visit today. Cornisha, Ben's adoring (and adored) Monarch mom, is on the left, July 12, 2015.


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