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
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
|Posted on November 14, 2014 at 2:30 PM||comments (2)|
|Posted on November 14, 2014 at 9:05 AM||comments (0)|
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:
Should a handful of publicly funded, highly intellectually skilled and bureaucratically entrenched disability righ...Read Full Post »
|Posted on October 27, 2014 at 2:00 PM||comments (0)|
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...Read Full Post »
|Posted on October 26, 2014 at 8:30 AM||comments (2)|
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...
|Posted on October 22, 2014 at 2:20 PM||comments (0)|
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 G...Read Full Post »
|Posted on September 15, 2014 at 3:50 PM||comments (0)|
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...Read Full Post »
|Posted on September 11, 2014 at 10:00 AM||comments (0)|
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 w...Read Full Post »
|Posted on August 22, 2014 at 9:20 AM||comments (0)|
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):
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 [f...
|Posted on August 18, 2014 at 1:05 PM||comments (1)|
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 g...Read Full Post »
|Posted on July 31, 2014 at 11:20 AM||comments (0)|
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 fi...Read Full Post »
|Posted on July 3, 2014 at 10:55 AM||comments (4)|
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....Read Full Post »
|Posted on June 26, 2014 at 10:15 AM||comments (1)|
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 embr...Read Full Post »
|Posted on May 27, 2014 at 11:45 AM||comments (0)|
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.
Read Full Post »
|Posted on May 5, 2014 at 3:35 PM||comments (4)|
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.
“Do NOT back up!”
Some version of this warning is visible on many highway toll booths, no explanation necessary...Read Full Post »
|Posted on April 21, 2014 at 9:55 AM||comments (3)|
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:
Printers Row Journal
Review: 'Life, Animated' by Ron Suskind
Read Full Post »
|Posted on April 2, 2014 at 7:15 PM||comments (0)|
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 ge...
|Posted on March 25, 2014 at 1:15 PM||comments (0)|
Virtual Road Raging – An Occasional Distraction from Autism
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 o...Read Full Post »
|Posted on March 11, 2014 at 12:40 AM||comments (4)|
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 af...
|Posted on February 24, 2014 at 9:45 AM||comments (0)|
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 ...
|Posted on February 6, 2014 at 4:35 PM||comments (0)|
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)
Read Full Post »