David Royko Psy.D

david@davidroyko.com

Ben moves to Monarch

Updates - Year Two

For the most recent Ben Updates click on the
CHRONICLES OF BEN Blog
 
Click for Ben's arrival and first month at Monarch (May, 2011);
Click for Ben's First Year At Monarch;
Click for Ben's Third Year at Monarch (through 10/4/13).
Click for Ben's gallery of pics from Cleveland.


UPDATE: April 13, 2013  Bullet Dodged (well, sort of)
Ben's never thrilled going to an unfamiliar place, so we weren't surprised by his loud resistance and desire to "go to the car" as soon as we approached the door of Cleveland's Beachland Ballroom. We were there to hear, hopefully, a few minutes of the sound-check the spectacular band (Bryan Sutton, Ronnie McCoury, Luke Bulla, Barry Bales) banjoist Noam Pikelny had put together for a tour. No luck. As Karen said, back in the car, "All the planets have to align," and this time, they weren't.

But at least the chef understood. 20 years ago, we might've have had a hard time explaining what Ben (and we) were dealing with. But these days, we don't have to worry about that. Saying "Sorry, he has autism" usually brings understanding and sympathetic nods. In this case, the chef at the venue said, "He reminds me of my son," who, yes, has autism. Autism Awareness has certainly succeeded, in part because there are so many dealing with it. Is anyone not "aware" of it by now?

And as it turns out, we actually dodged a bullet. When we left, we drove to a favorite bakery of Ben's (The Stone Oven), where his guts exploded in their bathroom. Not a good time for anyone (including the next person using that bathroom, which we cleaned, but couldn't quite deodorize), but better there then on the music club dance floor.

Before Karen and I left yesterday after this weekend's visit, Ben and I went for a walk around the streets encompassing Monarch's (and the adjacent John Carroll University's) campus, apparently a favorite route of his, taking close to an hour. I had Ben lead the way -- though from behind since he prefers walking behind people, often watching their feet. April 14, 2013.  

 

UPDATE: March 18, 2013  Moving Days
The Ben Updates have been quiet lately because life has been anything but. We (Karen and I)  moved last week, staying in the same suburb but downsizing to a (relatively) microscopic level. With Ben aging out of school district funding in a bit more than 2 years, we really don’t know where we’ll land next. Getting out of our place into less permanent housing is the first step into what at this point is a longer-term unknown. Jake said his good-bye to the house when he was in town for his spring break a couple of days before the move.

And Ben is moving this week himself, though it won’t be quite the same production as the one we just staged. He’s going from East to West, the cottage he’s been in for almost 2 years to the one he will likely be in for the duration of his stay with Monarch. Same building, familiar staff, just one locked door away from his “old neighborhood,” but a big change nonetheless.

We’ll see him this weekend for a longer-than-usual visit.


 March 12, 2013: Bye bye

UPDATE: February 27, 2013 "Better"
As Karen just said in an e-mail, people often ask how Ben is doing. Do we say "Great"? Ben's teacher, Kari, e-mailed today: "I think that things have been going better in the class. He is not trying to hit as many people and is calmer." (Ben's been going through a bit of a challenging stretch.)  Doing well for Ben looks different than doing well does for most people. With Ben, it's all relative.

UPDATE: February 19, 2013 Ben, Autism and Guns
      Our issue is Autism, and we are not particularly interested in publicly wading into the US gun debate that has become white hot since the Sandy Hook Elementary School massacre of December, 2012.
     Except that it is an autism issue.
     During a recent visit with Ben, I was taking care of something in the lobby of our hotel while Karen 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. The door to Room 107 (we were staying directly upstairs in 207) was ajar. Ben pushed it open 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 began to yell at Ben, 'Hey, don't go in there!' I quickly announced, 'I’m sorry, he’s disabled,' 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 women (probably the man's wife) lightly pushing Ben out. Ben was being gentle about the whole thing. She had a smile on her face -- she could see that Ben wasn't a threat. The man didn't see that.”
     End of incident.
     So, no big deal, right? A routine occurrence in the life and times of our big Benny boy, and no harm done.
     Except I couldn’t help but think of Paulie Heenan. He was a young Madison, Wisconsin musician who was shot and killed this past November by a cop because Heenan had drunkenly and mistakenly entered the wrong house on his block that he had recently moved to, the house looking like his own, with the key accidentally left in the lock. The US Justice Department is investigating, but whatever the outcome, Heenan’s dead. He was acting irrationally, because he was drunk. He was unarmed.
     Tragically, there are examples out there of individuals with autism acting up and being killed by clueless people. I’m particularly aware of Heenan’s (non-autism related) case because my cousin Amelia, a friend of his, has spearheaded the investigation into his death (https://www.facebook.com/PaulieHeenanMemorial).
     But remove the “drunk” part, and that’s Ben. He’s six feet, three inches tall, acts irrationally, and can seem threatening, especially to someone unaware of his condition. He can’t effectively communicate easily, especially with strangers.
     And he is always unarmed. Ben is not a significant threat.
     The man in Room 107 saw Ben differently -- a big guy lurching into the hotel room his wife was in.
     What if he’d had a handgun on him? What if his wife hadn’t realized Ben was harmless, and screamed? What if she had been armed?
     What would you have done?
     For Ben, and his many cohorts in autism, an armed world is a more dangerous world.


 
UPDATE: January 20, 2013 Pavarotti
Lately, Ben's been, to put it simply, a delight. We think his outings with staff are making a big difference in his ability to wait -- patiently!!! -- in stores and other places where he has to delay gratification for more than a millisecond. He also spent 15 happy minutes today loping through the Cleveland Museum of Art, serenading the other early arrivals (it opened at 10 and we were first in the door) with his bellowing echoing through the well-adorned hallways and exhibit rooms. (He's made up a few songs, like "A la la la Bubbe, a la la la Big Bird. Hef! Hef!" Bubbe is his grandmother. We have no idea what "Hef! Hef!" means. Poetic license.) 


Ben arrives at the Cleveland Museum of Art Sunday morning, ready to sing!

UPDATE: December 28, 2012 A Couple of Shots

Old Favorite Smile


Ben never gets tired of old videos he used to watch as a tike that pop up these days (and then are downloaded by me) on YouTube, like Preschool Power ("You can do it!").

Parallel Play


Jake and Ben might be worlds apart developmentally, but they truly are twins in some ways, even if their respective choices when in front of laptop screens may differ.

UPDATE: December 10, 2012 Ben and Bela
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 instantly request (er, demand) something else when it starts to play. When we picked him up Sunday, he seemed happy (or at least, not unhappy) when told, “Ben, we’re going to visit Bela Fleck!”

Bela and his brilliant wife and musical colleague, Abby (aka Abigail Washburn), were in Cleveland for his performances last week/weekend of his recent Concerto for Banjo and Orchestra, with Giancarlo Guerrero conducting the Cleveland Orchestra no less. After Karen and I heard this wonderfully engaging work Saturday night, Bela invited us to bring Ben up to their hotel suite at the Ritz (premier Classical soloists get premier accommodations) to see him and Abby on Sunday.

Ben seemed OK when we got out of the car at the hotel. As we walked into the crowded lobby, Ben’s voice boomed. Bela and Abby came down to meet us, and up we went to their suite.

Luckily Karen brought some scones, because that’s what kept Ben sitting for a few minutes, chewing while we chatted. Ben’s main (only) contribution to the conversation was, “Go to the car.”

As Ben finished his scones, Bela played. How many people get a solo recital by a favorite musician? But even Bela and his banjo were no match for autism. “Go to the car.”
As we said good byes and the elevator doors closed, Ben did say, “Bye Abby.” He has 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 we are members of the Lake Metroparks Farmpark near where Ben lives), and he might glance at one of the real live animals as we walk. Or not. In person (or “in live animal”?) is not the same as in a book. And in reverse of most typical people, the book’s better. Much.

That doesn’t mean Ben didn’t like his visit with Bela and Abby. He might end up talking about it in his own way down the road, or the next time we play some CDs of his. Or not. But either way, Bela and Abby were wonderful. We’ll never quite get over the sight of Ben getting private time with someone whose music he loves. It’s not easy to arrange or make happen. They are exceptional people and valued friends.

Saturday night was the beginning of Hanukah, but since we were going to be with Ben only for the first night, we went ahead and lit all of the candles. And being candles, Ben blew them all out. We hope any Supreme Being that happened to be watching will cut him some slack.


Birds take flight as Ben heads to pier's end at Cleveland's Edgewater Park, 12/8/12

 

UPDATE: November 19, 2012 He Did It His Way
Ben does many things differently. This is his own way of going down a slide. Thanks to Cory for taking the video. Ben's parting word, incidentally, is "Banana."

And for a look at Ben's relationship with another slide, this series of photos was taken when he lived at the ODTC in Oconomowoc, Wisconsin:
CLICK HERE

 

UPDATE: November 14, 2012 Laughing and Smiling A Lot
An update from Ben's Supervisor

Just wanted to check in and give you a quick update on what the big guy has been up to.

I've finally got an outing schedule created and implemented for him. His outing day is Wednesday afternoon and he has a weekly calendar posted in his room and one in the kitchen. When he asks for a car ride, staff refer him back to his schedule and review the current day of the week and what day he can earn a car ride.

Currently, he can earn a car ride by having no restarts between the time he arrives to the unit Wednesday afternoon through dinner. When he has successfully completed this, he reviews a social story telling him where we are going and what we will do for that particular outing. I have him begin the outing with a functional trip to the store to complete the process of purchasing items for the unit. If he stays safe and follows directions, he then earns a trip to any desired location (usually Burger King).

So far it's been working very well and seems to have decreased his anxiety around outings. He still asks frequently, but being able to refer him to the weekly outing calendar has been very helpful for him and staff.

Otherwise, there's not been a whole lot going on. Today he's been laughing and smiling a lot...
Sincerely,
Cory

We'll be heading to Cleveland Friday.

UPDATE: November 2, 2012 Lost in a Sea of Time
One of the most challenging aspects of Ben’s life is his difficulty with waiting. For Ben to wait in a line (or anywhere else) for a minute or so is huge, and often impossible without problems. "You have to wait," or simply the word "wait," can be a real trigger for outbursts or frustration.

And the research keeps chipping away. A recent brain imaging study looking at this exact issue suggests that it is, like so many things with Ben (and all of us), hardwired into his brain. “It may be that [Ben and his fellow cohorts] subjectively experience durations longer than they really are,” it says. He is “lost in a sea of time,” unable to easily differentiate duration: Children with autism get lost in time, imaging study says


UPDATE: October 31, 2012 Barney Whacked
Because of a concert I went to Friday night, we didn’t head to Cleveland until Saturday morning (the fact that we were staying an extra day for some meetings made up for the lost time). We were told Ben was fine, if highly excited, waiting for us all day, and when we pulled up, he happened to be looking out of the door. Once he spotted us, T.C. (one of Ben’s favorite staff) opened the door for him to greet us, which Ben did by bolting immediately for the car. In cold, heavy rain. With no jacket. In stocking feet. We hugged him and turned Ben back into the building where he happily loped back to his room and changed (he HATES wet clothes).

At Half Price Books, Ben found a Barney DVD he seemed to want. Karen also found a used CD of Sarah McLachlan that she and Ben used to listen to in the car years ago. After Karen paid for everything and I grabbed the bag and headed toward the door, she said, “Ben, I bought a Sarah McLachlan CD for you! We can listen to it in the car.”

This, as it turned out, was NOT alright with the big Benny boy. He rifled through the bag, and pulled out the CD and, for some reason, the Barney DVD too. He went to the CD bins and put the (already paid for) album back. Karen tried to pull it out as he pushed it back, saying “No CD!” Ben turned and walked to the DVD racks -- giving Karen a chance to retrieve the Sarah McLachlan CD without him seeing --  and reached to the very top to put the (already paid for) Barney DVD as out-of-reach as possible. As I reached way up to try and grab it, his hand darted back up and knocked it back further, where it fell behind the huge display case. Gone. Gone. Gone at least until Half Price Books is no longer and they tear the place apart. Someday a workman will find the dusty Barney artifact and become nostalgic over the old disc, the kind his grandparents used to play. He might even wonder what this purple “Barney” thing was.

Once we were in the car, Karen surreptitiously handed me the CD and as it played, Ben was happy to hear it. So, go figure.

We got to battle the front edge of Hurricane Sandy on the way back home Monday afternoon, a couple hours of cold, nasty rain and big-time wind. Ben won’t be taking many of his long walks this week.

Addendum 4:00PM CST
: I just spoke with Ben's unit because I saw on-line that Shaker Heights (Ben's neighborhood) has been hit by big power losses thanks to Hurricane Sandy. Turns out they lost power last night for a while, but they have an emergency generator that provided some power for essentials. Full power's back on now, and the wind and rain remain intense.

As the barber cuts, Karen bribes with Candy Corn, October 30, 2012


UPDATE: October 25, 2012 Perseveration

An e-mail update today:
~
Last night Ben seemed a little on edge the whole shift. Around 8:30 he went to take a shower (the bath tub was occupied). While in the shower he started to engage in SIB, hitting his face and hands. We tried to let him self sooth, but he drew blood from his nose and had to be restrained. Afterward, he went to bed and had a good rest of the night. He seems to be in a better mood today.

Speaking of Ben's affect… For the past couple weeks he has been perseverating on "car rides". I know that school is taking him nearly every day now; and, we try to as much as we can. However, we are often unable due to staffing or transportation issues. This past weekend I took him for a ride around downtown and out to Lakewood to get some McDonald's. He did great.

He's also been perseverant about seeing you guys and we have delivered the message that you will be visiting soon. Plus, I think the recent hustle and bustle of the unit can be stressful for the big guy. I think with the behavior and restraint last night, not getting a bath was the straw that broke the camel's back.

We've been trying to keep him engaged in activities away from areas during times we know to be hectic. That seems to help.

Otherwise, he's been doing great...

Anyhow, let me know if you have any questions, comments, or concerns and whether I've forgotten anything!
Sincerely,
Cory

~
We'll be seeing him this weekend. It sounds like he can't wait, and neither can we.

Benjamin Jackson Pollock creates abstract art whenever he eats pizza, and chocolate adds some additional hues.

UPDATE: October 11, 2012 Never Met A Pope, Either
This is only peripherally Ben-related, happening during our visit . . .


Last night, back home in Illinois, I had a great time presenting Royko In Love at the cozy Lyons Public Library (Lyons is a suburb about a dozen miles southwest of Chicago). As is often the case, the questions I got at the end were my favorite part. However, they couldn’t compare to a question I got this past weekend in Cleveland.

Monarch scheduled a number of presentations during the Family Weekend, and Karen went to a session at the nearby Beachwood Public Library. Her mom, Florence, was along for the Family Weekend, and as Ben and I waited in the car for Karen’s session to wrap up, she came out to tell me that, while walking past a conference room, she overheard someone say, “Royko In Love.” Florence looked in to see a group of ladies, and asked, “Did I just hear someone say ‘Royko In Love?’” Turned out they were discussing the book! Talk about serendipity. This wasn’t even the Chicago area.

“Well,” she said, “the author is right outside.” When I came into the room, I said, “This is the only time I will ever correct my Mother-In-Law, but I’m the editor. Dad wrote the letters.” I then launched into a quick, 3-minute talk about the book before heading back to the car and the big Benny boy.

Before I left, I got a couple of questions. First was whether my father knew Cardinal Bernardin (Chicago’s Archbishop who died about 6 months before Dad). I said I didn’t think so.

And just as I was heading out the door, I got one that I had never heard before, don’t think I’ll get again, won’t ever forget, and could only answer with, “Um, well, not that I know of.”

The question?

“Did he know the Dalai Lama?”


UPDATE: October 7, 2012 Parents - and Grandparents - Weekend
It's Parent's Weekend at Monarch, giving families a chance to meet (and eat). Rain forced the cook-out indoors, but the room was round, allowing Ben to walk laps for an hour and a half, grabbing sweets along the way and only sitting for five minutes to eat a burger. Considering that the room was filled with families whose kids are all at Monarch for, at least in part, some seriously challenging behavioral problems, it was amazing how calm and happy the room was. Monarch is an incredible place.

Karen's parents drove in with us yesterday, and Ben was thrilled to see them, though you have to know what that looks like to appreciate. We dropped Bubbe and Woody (aka Grandma and Grandpa) at the hotel, picked up Ben and when he walked into the hotel room, he glanced at them with a little grin only to focus next on the meal Karen was making. Otherwise, he didn't really interact much with them, but it was no coincidence that Ben didn't ask to leave the room and "go to the car please" for a half hour -- maybe a first. And the unsolicited hugs he gave to each of them the next day underlined how he really loves having his grandparents here.

Ben's Aunt Alyson sent a present for him, and it's a big hit: Norah Jones' Come Away With Me. This isn't a CD I've gotten to know  (though I like the jazz heavyweights backing her), but Karen used to have it in the car and Ben also had a copy in a milieu therapy program (Classroom Connection) before he moved up to Oconomowoc 6+ years ago, and he loved it. When I popped it into the car player, he went into his hypnotic mode, staring into space and listening. All the way through. Not once did he request something else. Add another disc to Ben's car collection.

Another big Ben hit this weekend was Duke Ellington Meets Coleman Hawkins (which delights me since this version of "Mood Indigo" is one of my favorite recordings of anything in any genre ever made). When a requested Schubert disc ended (Brendel playing Impromptus), I asked him if he might want some jazz and he answered emphatically, "Jazz!" The disc had just finished playing all the way through for a third time when we pulled into Monarch at visit's end Sunday.

Saturday we went to The Stone Oven bakery to get Ben some dessert. There was a little line, and as Karen waited, I paced around with Ben. He stood for a moment staring at the various goodies behind a glass partition before his arm darted over the top (he is 6'3") and pushed his thumb into a loaf of challah. "I guess we're buying some challah," Karen said. She grabbed the braided bread, and Ben took immediate possession. As Karen waited to buy him his cookies and pay for the challah, I followed Ben as he pranced around the bakery happily eating it.

Tomorrow we'll have a short visit in the morning before we head back to Chicago as Ben heads to his classroom.


Ben with book in one hand, challah in the other (and in his mouth), October 6, 2012

UPDATE: September 17, 2012 Bottomless Boy
Leaving Five Guys Burgers yesterday having eaten a double cheeseburger and many fresh-cut fries, Ben said as he walked out the door, "Go to Wendy's."
He settled for Starbucks and a doughnut for dessert.


Our hotel room this past weekend was on the second floor next to the stairwell, which meant no waiting for elevators, and some extra novelty for Ben, who loves exploring, September 15, 2012.

 ----------------------

UPDATE: September 6, 2012 Ben's Book - Give It Back
Here's an excerpt from an e-mail received this morning from Allison at Monarch, and Karen’s reply:

September 6, 2012, 8:47 AM
Hi Karen & Dave,
Ben has been having a good week this week.  I hate to say this and jinx us for tonight but we have not had any SIB [Self Injurious Behavior] episodes this week!  On most shifts Ben has had to restart [a corrective behavioral intervention] for some grabbing a few times but overall has appeared to be in a happier mood.  He is also starting to tell [client who has been filching Ben’s books] "Ben's book…give it back" without getting upset so that is good to see (and also pretty cute!).

I heard your visit last weekend was great!  Any noteworthy experiences or thoughts you would like to share?

Allison

~
September 6, 2012, 9:08 AM
Hi Allison,
Great news about Ben's week! I love that he is advocating for himself with words when [client who has been filching Ben’s books] takes his book. I think that will give Ben a greater sense of accomplishment and control over his environment. Thank you and the staff for facilitating this learning experience!

The weekend was good! Ben was adorable. Usually, there are a number of places he would like to go with us but occasionally he has a specific place in mind and just keeps asking for it to make his desire known. (Does "walk please" sound familiar?) :) Friday night he had Target on his mind. We offered Half Price Books but he insisted on Target. Sunday it was Barnes and Noble. It was so funny watching him shop at Barnes and Noble. He spent a good deal of time (for Ben) browsing the kid's book section, very purposefully, to find the perfect book. Our friends from Pittsburgh came and we were hanging around the hotel room. Ben kept asking for "car please" and we kept putting him off. At one point he leaned over and said into Dave's ear "car please" very slowly and very clearly. It was so cute. He was making sure Dave heard him loud and clear. In short, Ben was (mostly) a delight. A few loud yelps waiting at Five Guys and Denny's but that's about it. Now, if he would only agree to spend time relaxing in the room with us. He wants to go go go and we get tired.

Talk to you soon.

Karen

_________________________

UPDATE: September 5, 2012 Double Viewing
A brief video of Ben's preferred way of watching videos in the hotel room, from this past weekend:


UPDATE: September 4, 2012 Schubert
As we walked through the Metro Farm Park Sunday afternoon, Ben chattered away and sang his various song snippets when Karen said, "Is that Schubert?" It was a passage from one of the impromptus he had heard in the car a little while earlier, done in his loud and chatter-y Ben-style. Schubert had been one of his standard requests this weekend (once told that we don't have Mary Poppins this trip). At one point Ben went into his "hypnotic listening" mode -- slightly furrowed brow, staring at some random object -- and staying that way until the section ends. The world has a new Schubert fan.

UPDATE: September 1, 2012 Candy Targeted
Today Ben insisted that we go to Target. Even though their book selection can't compare to Half Price Books, HPB can't compare to Target for Reece's Peanut Butter Cups. As we approached the cash register with his chosen book, Ben grabbed a Reece's from the rack near the register and I quickly grabbed it back, reminding him about the cookies at the farmer's market we had just left and the lunch he'd soon have. Another huge gain that Ben's made this year is being able to accept that kind of thing with no bad reaction, and he let it go, happily prancing around the front of the store as I paid for his book. As we walked toward the door, I turned back to him only to see his teeth rip open the Reece's he'd managed to rediscover (I hadn't ditched it well enough). I debated going back to pay for it, but as Karen wasn't around (she was shopping for a few Ben-related things as long as we were there) and I was not eager to get back in a line to pay for a candy bar with Ben on the prowl looking for another candy bar...I'll just say Target gave Ben a bonus today.


Waiting at Wendy's, I didn't need to look over my shoulder today to know Karen was heading toward our table, tray in hand.

UPDATE: August 17, 2012 Walker
An e-mail update from Alyson (Ben's Unit Director) arrived this morning:

Ben has been doing well.  I know he is anxious to get back to school (but so are all of the kids).  Many of them have been talking about school a lot lately.  It's been a bit rainy this week but that has not bothered Ben.  His favorite things to do right now are go on walks (regardless of how hard it is raining) and to take a bath.  I wish he would go in the pool so that we would not have to walk in the rain and he could still be in the water.  He has also been asking for food a lot more this week but I think it's more out of seeing the kitchen all day long.  We moved his books into his room yesterday so I'm going to see if I can find him a better bookshelf to keep them on.  The Autism Walk is on Sunday in downtown Cleveland so we are attempting to get as many of the kids to participate as we can.  Hopefully Ben is in good space Sunday morning.  That seems to be one of the most difficult times of the week for him.  Maybe going on the walk will be motivating for him though.

Karen and I will go see Ben next weekend. This weekend is Jake's last at home before leaving for college.

_________________________
 

UPDATE: August 9, 2012 Honey Proximity
Ben recently decorated this frame around his smiling face with animal stickers and a few crowns tossed in -- except for the sticker nearest his lips...

_________________________


UPDATE: August 6, 2012 One - Two - Three - and Nineteen!
Here's a video from a week ago of Ben getting the birthday presents we sent:



He has had a heck of a 19th-birthday week. Karen and I drove to Cleveland Friday night and picked up Ben Saturday. If he were higher-functioning, Ben would make a great long-haul trucker. Instead of the usual 5-hour 45-minute trip, severe storms and Lollapalooza conspired to snarl the Kennedy, so between the rain and our Lake Shore Drive alternative route, it was more like a 7+ hour trip. Ben? He got out of the car fresh as a daisy.

This was Ben's first time back home since last Spring (2011) before moving from the ODTC in Oconomowoc. He seemed to have a good time. Karen and I, on the other hand, were reminded (to put it mildly) why he needed to move six years ago.

Ben went from the front door to the kitchen (naturally), and looked through every cabinet before going up to his old room and looking through his old books, then repeating the process in the den, this time with old videos. Karen's parents came by, and Jake and his girlfriend Carly too. I went up to bed around 10, and by 11, I was summoned. The "fun" had begun. Seemed like old times.

This is the potty paragraph, so if you would prefer to avoid crap, skip it. We certainly would've if we could've. Years ago, Karen and I redefined the typical toddler nomenclature for what comes out the body's nether regions. To "Number One" and "Number Two," we added "Number Three," when "Number One" (its brown version) is coming out of the usual producer of "Number Two." We finally got Ben to go to bed at 1:30am. By then, we'd had three "Number Threes" upstairs and downstairs and in a bed and across several rooms and hallways. Ben, who remained cheerful the whole time despite what must've been some stomach aches, then slept from about 2:00am until 6:00am, and Karen let me (the designated driver) sleep in (8:30am) while she rode out the shitstorm. Grand total: 10 loads of laundry in 11 hours. Originally, we thought we might -- might -- try to stay home for two nights, knowing it was a long shot that Ben would want that. Three hours after we'd gotten home Saturday night, Ben started asking to "Go to the car please." This doesn't necessarily mean he wanted to get back to Monarch, but he was ready to move on. Like I said, he'd make a great trucker. No amphetamines needed.

This is not an everyday occurrence for Ben, but his stomach is sensitive. He'd had more than his usual portion of goodies, but nothing excessive. It doesn't take much.

We sang "Happy Birthday" Sunday morning with a candle in a banana instead of the cake Karen's mother had made (the last thing Ben's belly needed), and Ben got a visit from his Uncle Jordy.

And fifteen hours after getting home, we were cruising back to Cleveland, arriving around dinnertime last night. It's been a nice visit since then, with a couple of walks in the woods and visits to Ben's usual haunts (Half Price Books, etc.). Tomorrow we'll see Ben for a few hours before heading home (again), making it four Cleveland/Chicago drives in 5 days. And most importantly, Ben's had a terrific time. He might think the only way to improve it would've been to do the four drives in 4 days.

_________________________

UPDATE: July 20, 2012 Delivered
Jake came along for the weekend's visit, and here the boys assess a burger as the Denny's waitress slides it in front of an eager Ben, who had just eaten some cookies and, as he was finishing his fries, looked me in the eye and said, "Pizza" (his appetite truly has no "off" switch).

________________


UPDATE: July 7, 2012 How To Get Banned From Costco (or die trying)
It was a brief but huge moment of Ben-induced panic before I heard Karen's voice outside of the Costco men's bathroom say, "Dave?!"

But backing up a little, it had been a fun day with our big Benny boy. I was still asleep when Karen woke up and decided to go get him earlier than usual, so I'd just gotten out of bed when they walked in. After having breakfast in the dining room, Ben did fine waiting patiently in our hotel room while we showered and got ready for the very hot day, which began at Half Price Books before we decided to head east to Moraine State Park, a couple hours from Cleveland in western Pennsylvania. Ben likes long drives, and if the weather is agreeable, he prefers having the car windows open. "Agreeable" to him means the temperature is between 0 and 105 degrees, with conditions from bone dry to hurricane. In the midst of our epic heat wave (several consecutive 100+ days in Chicago and pretty similar here in Cleveland), Karen and I decided the less time spent outdoors with Ben, the better, so the driving distance was actually a plus. Half the time, we were happily surrounded by cold air conditioning. Otherwise, we used the ol' 4-70 air conditioner (four windows open at 70 miles per hour) when Ben wanted open windows.

After cruising around the lovely state park, Ben was the center of attention as he paced all over a crowded Brown's Country Kitchen in Portersville, PA, requesting ice cream as Karen sat at the table and waited for the waitress to bring it (along with homemade pie).

On the drive back, Ben requested pizza for dinner. We prefaced our trip to Costco (Ben loves their pizza) with a quick jaunt to the shoe store. Ben hadn't had a proper fitting for a while, so we ended up with a super deluxe pair of $142 New Balance gym shoes that he wore out of the store. Next stop, Costco for pizza.

After a slice with cheese and another of pepperoni, we headed to the bathroom.

First, I must say that bathroom "incidents" have become, thank [your choice: God, Absolute Being, All Knowing, All Powerful, Allah, Almighty, Creator, Divine Being, Father, Holy Spirit, Infinite Spirit, Jah, Jehovah, King of Kings, Lord, Maker, Yahweh, daemon, deity, demigod, demon, divinity, holiness, idol, master, numen, omnipotent, power, prime mover, providence, soul, spirit, totem, tutelary, universal life force, world spirit, Kurt Cobain], a rarity. Maybe that's why this felt so god-awful.

Karen has advised me toward sensitivity to a reader without a cast iron stomach when it comes to describing the scene, so let's just say when Ben dropped his drawers in the stall and I realized what had already happened and what was happening still, I thought, "Oh sh*t, Karen's cell phone is in the car, she's headed off to shop for Ben's underwear in Costco, and I can not leave this stall while Ben is here." It was panic.

And then it was Karen's super-duper olfactory glands to the rescue. After Ben ate his pizza and we had headed to the bathroom, Karen detected a faint whiff of what Ben had just begun. By the time Ben and I had reached the bathroom, I hadn't realized that he was leaving a trail of, well, let's just say it wasn't Hansel and Gretel's breadcrumbs. And thank [again, your choice], because that's why Karen was close behind, and the sound of her voice outside the bathroom rivaled the greatest works of Beethoven at that moment.

It seemed to take her forever to get back with fresh supplies (towels, underwear, swim trunks, etc.), but at least this was Costco, where she could find such things (an ACE Hardware, for example, would've presented an even bigger challenge for us to find a way to get him cleaned up and out). Too bad we had him wear his new shoes out of the shoe store -- they've now had a unique breaking-in (and scrubbing).

After Ben was cleaned up, Karen asked me to wait outside the bathrooms for her to run into the woman's bathroom to wash her own hands -- we'd been in the men's room the whole time, with guys in and out doing their thing. In fact, one guy, as he washed his hands, kept glancing over toward our stall, or more specifically, at what he could see under the stall's door, finally muttering "Nasty" as he walked out.

Oh, it was. But finally we were done enough to get Ben moving toward the exit. Two maintenance guys were waiting to clean the stall as we headed out, having already taken care of Ben's floor trail between the food court and the bathroom. I pitied them. They avoided eye contact with me.

As we waited for Karen to clean herself up in the ladies room, there at the back of the store, Ben moved toward a door that was adorned with huge, red-lettered signage warning of the dire, alarm-laden consequences of trying to open that door. I lunged toward Ben, too late of course.

"WooooEeeee! WooooEeeee! WooooEeeee!" screamed the first siren, joined immediately by "WeeeDahWeeeDahWeeeDah!!!!" and, just to be sure the point was made, "AhhWAHHH! AhhWAHHHH! AhhWAHHH!"

The sirens were coming from speakers in the ceiling, and not just around the back door, but throughout the entire, massive warehouse. People stopped. They looked around. Various Costco employees headed our way. Karen yelled from inside the bathroom, "Did Ben do that???" We headed toward the front door as Karen emerged from the ladies room and Ben pranced toward the exit with bare feet and a big grin.


Ben at Denny's on July 6, 2012, excited (hence the hands-to-face stimming) as he watches his burger cook.

 

UPDATE: June 20, 2012 Zena
Zena Warrior Puppy Royko: Fall 2000 - June 20, 2012
Zena's last days.


UPDATE: May 26, 2012 (2) Ben Ezz-Thetics
Five months into our new way with music and Ben, the plan is to bring an old favorite on each visit, but not have it with us until Day Two, allowing (or forcing) Ben to expand his range, and enjoyment, on Day One. He loves Sam Bush, maybe more than anything, so I have Bush's "King Of My World" for tomorrow (he's requested it since the first minute of today's visit, and it's one he's only gotten to know really over the last couple of visits although by now, it's already become an 'old favorite'). As an alternative, I brought New Grass Revival's Barren County album, referring to it as "Sam Bush's New Grass Revival Barren County album." He seemed to like it. When it was over, he went with the Beatles White Album, which he also really seemed to like (he's heard some Beatles already, but not the White Album). Then he surprised me by picking a CD I doubt he'd never heard (I brought it to listen to on the drive back to Illinois tomorrow, not expecting him to try it), George Russell's "Ezz-Thetics."

If you know this 1961 album, you know it's "serious" jazz, accessible if you're into this type of thing, but by no means "easy listening" jazz, or even straight-ahead mainstream jazz -- Eric Dolphy is on reeds. But Ben was clear and insistent, so on it went. Then later, when we got back in the car and I asked him what he wanted, after saying "Sam Bush King Of My World" (and hearing again, "Sorry Ben, I don't have that today -- we'll hear it tomorrow"), he said, "Jazz. Jazz!" and rummaged through the holder, coming up again with Ezz-Thetics (and quickly popping the CD out of the case and handing it to me, which does make me a bit nervous -- Ben is not the gentlest of guys when it comes to CDs or DVDs). Then when it ended, I went to take it out of the player and he again exclaimed, "Jazz. Jazz!" And in it went again. He really seemed to be focusing on it, listening intensely, as he tends to do with favorite tracks from all the discs he loves. He's getting to know it pretty quickly.

By late in the day, he was back to "New Grass Revival Sam Bush Barren County," two more times in fact. Tomorrow, I'm going to keep the holder filled with the same discs but add "King Of My World." I expect him to request it every chance he gets. From now on, each visit, I'll mix in brand new (to Ben) discs with some of his new favorites, plus an old favorite for Day Two. And hopefully, soon Ben will be demanding "Jazz. Jazz!" or Mozart piano concertos, or the Beatles White Album, or Andy Statman's "Andy's Ramble" (another one he heard last visit). Ben has a long life ahead, and it would be nice if a wide range of music could provide real pleasure.


Ben rounds the path with book, as always, in hand, May 26, 2012

UPDATE: May 26, 2012 (1) Gouged
Sometimes, I just don't know what to do. We (Ben and I) dropped Karen off at Whole Foods to run in and pick up dinner. Instead of going inside with her, Ben and I took a short drive through the neighborhood. Everything was fine until I pulled into a driveway to turn around. Ben doesn't like turn-arounds, and this time he expressed himself by grabbing my arm and digging in hard, instantly leaving a big, bloody, purple welt (the second time today he's drawn blood from that spot). Time-out, window up, music off, Dad hollering at him, and he understood, based on his repeated requests for "no time-out" and repeated "Say you're sorry"s (his way of saying he's sorry). So, yeah, he got it. But I'm still trying to avoid it ruining the whole f****** day. It sucks to be physically attacked by your son, but really, the only thing I care about is him not ever doing that again because, as painful as it is on my arm, that's nothing compared to how those types of actions will compromise, to use a low-key word, the quality of his life as he ages, from Ben's living situation on down. That's Ben. We can go from a nice, enjoyable and positive day with our sweet, wonderful Benny boy to feeling devastated by this nightmare that is autism. I hate hate hate it.

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

UPDATE: May 19, 2012 Ben, Family, Warts 'n' All
We're told Ben is looking for us today. It's a weekend we "should" be there since most of the time we shoot for every-other, but we're going next weekend (longer weekend thanks to the holiday). We talked with staff a little while ago, us being called because Ben caught one of his warts on the plastic edge of a bin and cut himself. They're handling it well, and as is typical for Ben, it sounds like he hasn't had much response to physical pain. Ben sometimes defines stoic which is probably good because medical stuff is certainly a challenge for him (and those of us who look after him). This e-mail came yesterday from Allison, Director of Ben's cottage, and brings warts and teeth together:

"There have not been any issues to report this week.  Ben has been doing well! Ben saw the dentist this afternoon and he does not have any cavities.  The dentist originally said that he could be seen in another 6 months but I talked with her about the wart on his toe and she said that since it has been over a year since he had a cleaning that she would recommend the sedation so that we could get everything taken care of at once.  We can touch base about how to proceed with this and which doctor we would like to use.  I'm open for whatever is easiest to get everything taken care of with only one procedure."

The plan is to get the dentist and dermatologist together while Ben's under a general for some one-stop shopping and chopping (of warts).

On a couple of side notes, we just found out that Zena, our old dog (12 this coming fall) and the one pet Ben's known, has what's messed up Derek Rose's NBA life, a torn ACL in her knee. Surgery's not really an option due to her age, so now she's just an old, gimpy dog with a prescription for pain meds.

And Zena's biggest fan, Ben's twin brother Jake, wraps up high school this week, and to our complete surprise, he is the cover boy on our local paper (The Deerfield Review) in a candid picture taken at school. The caption reads: "Jake Royko talks about Native American music during his presentation at the Deerfield High School Senior Symposium, the first the school has run." Congrats Jake -- a nice little send-off.




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


UPDATE: May 5, 2012 On to Year Two, and the ACAA Summit
Today is Ben's one year anniversary of arriving at Monarch. Nothing speaks to his growth more than our dinner with him tonight at Denny's. We walked in together, Karen kept him busy with some books while we waited for his food, and, one single yelp aside, Ben was a perfect gentleman (well, besides picking his nose). Ben, Karen and I all enjoyed the outing -- and that felt amazing.

We arrived here this afternoon by way of Toledo (actually, Whitehouse), Ohio, where we'd been since Thursday for the Agricultural Communities for Adults with Autism (ACAA) Inaugural Summit. Hosted by Vicki Obee-Hilty's Bittersweet Farms, the summit was the first event born from the ACAA that Chicagoan (and father to a young man with autism) Gene Bensinger has organized. From the press release announcing this extraordinary event:

Whitehouse, OH………………Members and guests of the Agricultural Communities for Adults with Autism will meet at Bittersweet Farms in May for their first conference.  Agricultural Communities for Adults with Autism (ACAA) is a consortium of existing and prospective organizations that focus on sharing best practices and advocate for holistic, agricultural based employment and for housing models for adults with autism.  The goal of the conference is for organizations to build their strength in order to advocate for the agricultural community model.  The members and guests will spend time together sharing knowledge and learning from each other’s experiences.

ACAA was created two years ago to provide information to adults with autism, their families, academics, professionals, legislators, policy makers, other agricultural communities and interested parties.   The 50 member group educates people about the common characteristics and differences in agricultural communities in the United States.  A website exists to dispel the incorrect notion that agricultural communities are institutional, segregated, congregate care models when, in fact, the members, residents, and day program participants are strongly woven into the fabric of their respective communities.

Farming communities for adults with autism are typically non-urban, low density community based integrated models. Typically there are no openings and long waiting lists.   The only way many adults with autism will be able to access an agricultural model is for advocates to come together with others to create a model in their own area. Creating a community is difficult but not impossible. The ACAA Inaugural Summit will provide information and networking for the 70 individuals registered including a representative from Autism Speaks.  Attendees are coming from 15 different states across the U.S.


I moderated the session Who We Are -- Program Overviews of Summit Participants, which featured more than 20 agricultural communities summarizing their histories and organizations, and by the end, the cumulative power of hearing, one after another, what each of these people have created or are in the midst of creating was, for me, inspiring and almost overwhelming. The range and diversity of approaches to the huge task of starting and maintaining these communities was simply amazing. Karen and I see this as potentially the solution to Ben's long-term, post 22-years-old life, and after the summit, we're even more convinced. We also know that the amount of creative energy and work that is required to achieve this goal is daunting, but being in a room with so many who are achieving this dream felt almost miraculous. Other sessions included "Advocacy -- A Vital Key to Our Future," "Building a Fund Development Program," "Day Programs," and other topics with practical information that would have been hard to get elsewhere. Bravissimo and bravissima (because bravo and brava just ain't enough) to Gene, Vicki and everyone who put so much into this first event of the ACAA, and it is only the beginning.


Ben at the door, May 5, 2012. It's one year today since he arrived at Monarch.

 

For the most recent Ben Updates click on the
CHRONICLES OF BEN Blog
 
Click for Ben's arrival and first month at Monarch (May, 2011);
Click for Ben's First Year At Monarch;
Click for Ben's Third Year at Monarch (through 10/4/13).
Click for Ben's gallery of pics from Cleveland.