David Royko Psy.D

david@davidroyko.com


Ben moves to Monarch - Updates - Year One

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 Second 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 16, 2012 As**ole Parker Me
Have you’ve ever seen a car -- obviously owned by a major jerkwad -- in a parking lot straddling two parking spots? Well, that's me, at least sometimes, because I am a complete and total as**ole parker when Ben’s with us. But really, I think I deserve thanks. Hogging two spots -- and I always go to an area on the outskirts where the cars have thinned out -- is the much lesser of two evils, the alternative being that Ben whips open his car door and leaves a nasty dent on the neighboring car door. Straddling two spots means he can fling open his door as fast and as hard as he likes and nobody’s mad. At least not at him.

Our next Ben visit will mark his one year anniversary of moving to Monarch. One of the advances he’s made is in the general area of “waiting.” Yesterday, we went to Barnes and Noble, a place we haven’t been to much all year thanks to Half Price Books. They only had one cashier working, who was slowslowslowwww, and a year ago, this would have been trouble: aggressions, screaming, blah blah blah wince wince wince. Yesterday, no problem. Not that Ben actually stands in line, but Karen stands in line while Ben and I pace around the cashier area until it’s our turn for Ben to hand over the book for scanning. He was happy and compliant. We were happy and relieved.

And as for music, the three things Ben requested most this weekend: Schubert, Beatles, Sam Bush. Yes! (Actually, maybe I’ll bring some Yes next time.)

And the specifics for fellow music geeks: Schubert’s Impromptus, Klavierstucke and Moments Musicaux played by Brendel, and the second piano trio played by the Borodin Trio; Beatles’ Magical Mystery Tour; Sam Bush’s King Of My World.


Walking through a marsh yesterday, Ben really enjoyed hearing the many different birds. "Birdie," he said repeatedly, and they seemed to keep answering.

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UPDATE: March 15, 2012 From Kari, Ben's teacher, on Tuesday:
"Just wanted to share with you what a great day Ben is having. He was able to make his own sandwiches with some assistance and place them in baggies and put them in his lunch where he ate them an hour after he made them. He did not even try to take a bite. For the first time he was able to follow all six of the tooth brushing placement positions in his mouth by just looking at the picture and he also was able to stand in one place without wandering around the classroom while I got his popsicle for 30 seconds. Just thought you would like to know."

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UPDATE: March 12, 2012 More Books
A short (under two minute) video of Ben (before Karen shaved him) browsing at Half Price Books this past weekend. He picks a favorite (Ben has never bowed to sex-role stereotyping in his literary preferences), before mentioning what is really on his mind (Five Guys Burgers). Next, he names another favorite book (The Very Quiet Cricket), and then ignores the understanding woman to his right. “I’ll let you go…” she says as we apologize and Ben happily keeps on browsing, Saturday, March 10, 2012, Cleveland.

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UPDATE: February 27, 2012 Happy Drunk
A couple of recent Ben moments:

Ben’s gotten better at looking at but not touching (i.e. grabbing) strangers’ food as he passes. “Better” does not mean perfect. Recently, after devouring his chow, Ben leapt up from our table at Chick-fil-A and followed me to the door, with Karen close behind him. A pregnant lady and her toddler, backs to their table, stood conversing with another mom who was looking toward the ball pit where her own child played. To give Ben the benefit of doubt, not that he would care, their table might have seemed deserted, even though the mom’s butt was pressing against it. Gliding by, in one seamless motion Ben’s hand darted from table to mouth so quickly Karen missed it, no fries left behind. Usually (this has happened before, though not for a while) I might stop and apologize, maybe offer to order a replacement or grab my wallet to drop a couple of restitution-bucks on the table, depending on the circumstances and state of Ben’s mind and behavior. On this day, the joint was jammed, Ben was already heading out the door, nobody had seen anything except for me, and I decided just to let it go. But I know that somewhere in Ohio, a mother might still be questioning her sanity and thinking, “I swear I hadn’t eaten those fries…”

Saturday night, after dropping Ben off, Karen and I picked up Indian carry-out and a couple of large cans of beer. When we were done eating, I asked Karen if she wanted to finish her beer, and she asked me to pour a little bit more into her glass. Sunday morning, we brought Ben back to the hotel for our usual pack-up and load-out. I ran back down to the lobby for a luggage cart, and when I got back up to the room, Karen said, “I think Ben just had his first beer!” “What?” “Left over from last night.” “But I finished the beer.” Karen said, “But I didn’t – I never drank that last bit you poured for me. I think he just drank it.” I went up to him to sniff his breath (never thinking Ben would be the twin who first required that particular fatherly act). I smelled beer. And then Ben giggled. Karen said, “Well, at least we know he’s a happy drunk.” I was shocked that Ben actually drank it, being a pretty orally-defensive guy. We figured that it must’ve looked like apple juice, especially after going flat from sitting out all night. But even so, the taste of beer is something we’d expect Ben would hate enough to spit back out. Then again, it was Heineken. Flat Heineken, maybe, but what the heck, Ben was in a good mood all morning. Maybe we should talk to the psychiatrist about a “medication” change.


Ben eats, with no beer


UPDATE: February 2, 2012
A Pleasure To Work With

This e-mail came today from Ben’s teacher, Kari. She made my day:

"Just wanted to update you on how well Ben is doing in school. He is a pleasure to work with. I feel he has really made some close connections with me and his speech therapist (Liz) and is feeling very comfortable in school.  He is not hitting staff members near as much as he used to. Also he is not engaging in SIB's as much as he used to in the past and when he does he is able to self calm much easier. He is learning how to make new food items and learning how to wait patiently for the food to cook. He is also learning how to use the vacuum and is able to focus better on cleaning up the floor. He also is getting better at finding folders and documents he needs on the computer such as his daily schedule and the inventory lists. Three to four times a week he is leaving the building and delivering items to a building on the other side of the campus. He is really enjoying this and is learning how to find the items on the list, get the items and put them in a bag for them to be delivered. He is even able to put food items in the bag and leave them alone. He also is enjoying using the iPad and is getting better at navigating his way through the app's he likes.

Please let me know if you have any questions or things you want to discuss."

We’ll be seeing Ben for a short visit this weekend, leaving town tomorrow—Friday—in the late afternoon, seeing him Saturday and Sunday before getting back Sunday evening. And, I’ve got his music picked out, including some things he used to love, like the New Coon Creek Girls’ “The L&N Don’t Stop Here Anymore.” And, NO Mary Poppins.


Karen shaves a happy Ben

UPDATE: January 23, 2012 Happy Musical New Year
Karen and I have heard the soundtrack to Mary Poppins well over 250 times. Same with Joel Frankel’s Don’t Sit on a Cactus. These are discs that Ben has requested during car rides, every visit, and multiple times. Some other CDs in his regular rotation include a few by Sam Bush, Nickel Creek, and a compilation called Sugar Plums, of “holiday music” that we’ve heard every weekend, year-round. It’s all great stuff. My philosophy with “kid’s music” is that kids will enjoy great music, and it doesn’t have to be made for kids. So, Ben might have great taste, but trying to play something other than what he’s requested would result in war – Ben trying to climb out of the back seat to get to the CD holder and the CD player, in full battle mode. So, Chim Chim Cher-ee it has been, for five and a half years.

Again, it’s all dandy music. But I don’t think I’ve heard anything else as many times in my life. Not the Beethoven 9th. Not Abbey Road. And thank goodness.

On our end-of-2011 extended visit last month, we tried to sneak in something different. Forget it. So, Karen suggested we just leave the old favorites at home for the next visit. Ben would see that they’re not in the car, and come what may, he’d have to roll with it.

Fact is, we had come to think that Ben wasn’t enjoying these “old favorites” anymore that much himself. Rarely would he want to listen all the way through, instead requesting a different one halfway through the disc. Most likely, the predictability is what he has found comfortable. “New” can mean “scary” for Ben. But when he would occasionally end up hearing something different (especially if it was in a genre he especially likes), he would seem pretty happy.

So, be it musical nirvana or Armageddon, we were going to pull the trigger and pull the old discs. Instead, I brought music I thought he’d like, including some things he’d heard years ago and some fresh things based on his usual tastes. Peter Rowan, Bluegrass Etc., and the Johnson Mountain Boys for bluegrass; Scarlatti piano sonatas for classical; Barenaked Ladies for some rock; Abdullah Ibrahim’s Water from an Ancient Well for great jazz, and a delightful Hal Wilner project called Stay Awake, with a variety of artists commissioned to do a Disney song, like Tom Waits growling High Ho and Harry Nilsson traversing Zippity Doo Dah. Ben knows and loves many Disney songs, so it would be familiar but not the same old, same old old old old old…

As always, Ben got in the car requesting Mary Poppins. I opened the CD holder so he could see it was empty and said, “Sorry Ben, but we left Mary Poppins at home, but we have some great bluegrass!” as the Johnson Mountain Boys began.

And that was that. If I could kick myself in the ass for not doing this 5 years ago, I’d use a steel-toed boot. Ben enjoyed the “new” music. All weekend. (So did we!) He accepted, quickly, that we didn’t have his usual music. The next morning when we picked him up, he again requested an old favorite, and again, he was fine with something else when we told him, again, that the CD holder was bare. That this happened on our first visit of 2012 was coincidental and not resolution-ist, but I sure am going to enjoy picking out the music for Ben’s car rides this New Year.


Ben in the hotel's hot tub, December 26, 2011


UPDATE: December 31, 2011 Christmas in Cleveland
Five straight days of Ben visits is the longest stretch of consecutive days we've had with him since he moved to Oconomowoc five and a half years ago and it was wonderful. And exhausting.

We drove Christmas Eve, checked into the hotel, connected with our friends and headed to Corky and Lenny's for dinner. Christmas morning, the Ben time began, and it was so nice to tell Ben how many days we'd be there ("Tomorrow and the next day and the next day after that and then the next day and then the day after that too"). And he seemed delighted, and when we were all together that morning, Ben giddily paced all over the hotel room crammed with people he knows and likes for a good hour -- a great start to a great week. Here are a few pics.
2012, here we come...


Ben, Jake and Karen, 12/25/11



UPDATE: Friday, December 23, 2011 Occupy Starbucks
We’ll be heading to Cleveland tomorrow for 5 days with the big boy, the longest stretch we’ll have had with Ben since he left home five and a half years ago. Some close friends will be converging from points east and west to join us for the first few days.

Ben continues to do well at Monarch, and we’ll be meeting with various professionals (psychiatrist, neurologist, etc.) this week to wrestle with some problems (his anxiety, we’re pretty sure, is at the root of many of Ben’s self- [and other-] injurious behaviors and other problems). Monarch has been virtuosic in applying behavioral strategies. Some medication adjustments might be worth considering now.

Here’s a brief e-mail back'n'forth between Allison (
Director of Ben’s cottage) and me from today:

Hi Karen & Dave,
Ben has had a pretty good past couple of days.  He had one incident yesterday afternoon where he became agitated on a walk and began to SIB.  He was hitting himself and flopped down on the ground and continued to SIB.  Staff were able to redirect him to take a break and he was able to come back into the building and take a break in his room to calm.  Other than that incident he had a good day!  It was also good that he was able to self-calm.

He also had a great morning today so we just went on a trip to Starbucks.  I'm not sure if it was going to Starbucks with new people or us not knowing his routine but we had some minor struggles.  Ben picked out a donut so we got that for him and then he did not want to leave.  I offered to buy him another donut and we could eat it in the car.  He flopped down to the ground but as soon as I had the donut he got up and followed me (and the donut) to the car.

Otherwise he has been doing well over the past few days…

~
Thanks so much Allison. Your Starbucks visit with Ben sounds like an adventure. Your take on what he was up to is right on. Typically, he'll eat his donut (or vanilla scones) and then want more, which we then get and use to lead him out to the car, where we'll give it to him (or at least wait until he's outside and on the way). He can be so entrenched in routines. It sounds like you were doing pretty much what we do with him there, but a minor variation when he's at such a favorite place can bring trouble. At least he got back up when you had the second donut!
~
Well we were not too far off from the routine then.  Ben kept talking about getting coffee with 6 creams on the way to Starbucks once I told him where we were going...is that something he really gets?
~
That is hilarious -- I have NO idea where he got that. When I get coffee there, it's always "a venti, black, with no room for air." And Ben has never tried coffee. Could you imagine a highly-caffeinated Ben?!?!

Ben at Starbucks in November

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UPDATE: Monday, November 28, 2011 Big Deal
We used to take Ben to eat at Denny’s when he lived in Oconomowoc, but as with most things Ben-related, it had a twist. Because he could never sit and wait for the food to be cooked and served without going ballistic, not to mention remaining seated, I would drop Karen off at Denny’s on the way to pick up Ben. Karen would get a table and order, and by the time I got back with Ben, the food was waiting.

There’s a Denny’s close to Ben these days, and he’s requested it, but one of the rules we made for ourselves when Ben moved was to not go to such lengths with meals or events, instead only taking him to restaurants when he was ready to withstand the agony of ordering and waiting without commenting via tantrum.

This weekend, armed with his new iPad2 (and thanks again Bill, Bob and Mariann) and hoping beyond hope that the improvements we’ve seen in him might extend to waiting in a restaurant, we decided to give Denny’s a try.

After successful (which means cooperative) visits to Home Depot to get him a fan (which they didn’t have because fans are out of season – like strawberries?) and Kohls for clothes, he requested Denny’s again, because it’s in the same mall and within Ben’s sight range. He seemed surprised when we said “OK!”

The one concession to non-normalcy was ordering Ben’s food with the hostess before we were even seated. But, the wait for the food was longer than usual because the joint was jammed, a real recipe for trouble.

We have never had a better experience with Ben in a real restaurant. Thanks to the gains he has made at Monarch and the jigsaw puzzle app on the iPad, Ben sat, didn’t yell, didn’t aggress, and even exchanged a smile with a cute little girl who looked to be about five in the adjacent booth.

As we walked back to the parking lot, Karen and I were a little bit euphoric, and Benny’s loping, bounding gait meant that he was, too.



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UPDATE: Tuesday, November 22, 2011 PAs and iPads and SIBs, Oh My!
The most distressing behaviors of Ben’s involve aggression, toward himself (SIBs  =  Self Injurious Behaviors) and others (PAs = Physical Aggression). The ‘others’ are usually staff and Mom and Dad, much less often (thankfully) other kids and residents. His aggressions toward himself are whacking himself in the face and side of his head with his hands, often repeatedly in quick succession, and hard. The staff at Monarch has tried various interventions, and is now putting together a plan to try to address these actions. And, here they are (reproduced with their OK):

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Ben’s New Behavior Recommendation
We will be responding differently when Ben displays SIBs or PA.

Reactive Measures – what to do after the behavior

Grabbing/Physical Aggression:
If Ben grabs at you as means to get your attention, gain access to something, or just grabs you and you aren’t sure why, immediately redirect him to “START OVER”.  Say nothing else to him.  And everyone must use the term “start over”.  Initially we will redirect him verbally by saying “start over” and visually with a large visual that says and has a symbol to cue him to “start over”.  It might also take some physical guidance at first as well.  Once he becomes familiar with what this means, fade the verbal and physical prompts.  However, even when we fade the prompts this does NOT mean that he should be left unsupervised.


After he is given the prompt, Ben should walk to the table at the end of the main hallway to the table.  The location/table will have the same visual cue card on it.  Once there, Ben should complete the provided task.  This task should remain the same and will be something that he is able to complete quickly and independently.   Do not verbally engage with Ben while he is starting over.  Use gestural prompts with him if needed or at the most 1 word responses such as “finish”.  After he finishes the task he can approach staff again and ask for what he wants.   No squeezes are to be given while he is sequencing through this intervention.  After he finishes and if he asks for squeezes, immediately provide them to him.


If at any time you feel as though Ben is putting himself or others at risk, utilize an approved TCI physical restraint.


Self-Injurious Behaviors:

When Ben begins to display self-injurious behaviors cue him to “take a break”.  Again, use this terminology so he does not become confused.  He should transition to his bedroom.  Initially we will redirect him by verbally saying “take a break” and visually with a large visual card that says and has a symbol to cue him to take a break.  It might also take some physical guidance at first as well.  Once he become familiar with what this means, fade the verbal and physical prompts.  However, even when we fade the prompts this does NOT mean that he should be left unsupervised.


In his room there will be a large choice board up on his wall for his to use during this break.  It will consist of things such as water, fan, music, etc.  Squeezes should not be given during this break time.  We want to work on him proactively requesting squeezes and covers before engaging in any maladaptive behaviors.  There is no time limit on how long the break should be, just until he has appeared calm for a few minutes and is no longer engaging in behaviors.
Respond to the first behavior displayed.  For example if Ben is hitting his face and as you approach he grabs you, respond to the SIBS – “take a break”.

Also, even if he hits his face one time, or attempts to grab you – follow these interventions.  Nothing will work or get better if we are not consistent.


If at any time you feel as though Ben is putting himself or others at risk, utilize an approved TCI physical restraint.


Proactive Measures – what to do to keep the behaviors from occurring


During demand activities (i.e. PIPS) always have an options board in front of Ben.  It will include: “break”, “squeezes”, and “I want…” icons on it.

If Ben requests squeezes, provide the squeeze right where you are.  Do not transition to his bedroom.  Reinforce that he is using his words.  Give squeezes for a few seconds and then go back to task.


If Ben requests break, reinforce that he is using his words.  If Ben starts to engage in his distressed vocalizations, prompt Ben to “use his words” and direct him to his options board.  At first signs of any physical behavior whether self-injurious or physically aggressive, redirect accordingly using the plans previously stated.


Continue to use edible reinforcement through his schedule!!


When Ben is engaging in choice time, intermittently prompt him to identify his wants and needs.  We tend to see a lot of behaviors when he is alone for a longer than a few minutes.


It is staff’s responsibility to have all visuals necessary for Ben at all times.
 

· Nothing will work or get better if we are not consistent!! However, it is not unusual for behaviors to get worse before they get better after a new intervention is introduced.  If you have personal opinions regarding this intervention please see myself, Alyssa, Nikki or Allison.  Otherwise you are expected to follow this plan as a part of Ben’s treatment and as a part of your job responsibility.

One final little change – Ben no longer has to pick up all of his books each time he picks out a new book.  It will be his expectation to pick up all of the books before transitioning to bed. Make it a part of his nightly routine. 

~~~

We (Mom and Dad, aka Karen and I) will try following the same system. These behaviors are pretty deeply ingrained, but we’ve been impressed with how Monarch is able to apply interventions and get real results.

The most horrible part of Ben’s SIBs for me and Karen has always been that there is something going on inside him that he can’t communicate and that brings frustration so severe that he hits himself. So, we’re excited to be giving Ben his own iPad this upcoming visit. We’re expecting (hopefully) that it will be something Ben takes to, for communication and other things, as we’ve heard and seen elsewhere -- 60 Minutes recently had a piece about the iPad and autism. We’ll be looking for some autism-friendly apps, so any suggestions would be happily received. Today Kari (of Monarch) e-mailed me these app suggestions: Stories 2 learn; Jigsaw puzzles; Schedules To Do; Animal Match; Bubble popper (it's free); The Cat in the Hat. So, we’re off!

The iPad, incidentally, is a gift from long-time friends who used to be my lit and math teachers in high school. A thousand thank yous Mr. Bill, Bob and Mariann. Wow. And wow again.


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UPDATE: Saturday, November 5, 2011
Happy Anniversary

In May, Karen said that we should have a good idea how Ben would do at Monarch after six months, and as of today, it's been exactly half-a-year since Benny Boy landed in Cleveland. "He's doing good," Karen said today, and I'd say that's a bit of an understatement. Monarch and the people working there have been spectacularly impressive, and Ben has responded. Six months ago, Ben would never want to go into any place he didn't know, and even then, he'd rarely want to get out of the car even if he did know the place. When we'd try, tantrums would be almost inevitable. Eating (on visits) was usually done via the drive-through, and "activities" were usually restricted to a lot of driving and a lot of drive throughs. When Ben moved, we made changes to our visits: No drive-through/eating meals in the car; No old stand-bys like McDonald's, at least for a while; No (or few) every-visit activities; More variety. That all might sound easy. If it does, you don't have a kid like Ben. But what a difference these 6 months have made.

Today has been among the best so far. When we got to his place, Ben was getting a bath, having had a relaxing morning, always an amazing verb (”relaxing") when applied to him. Ben had slept until 6:00 am, also pretty good for a visit-day -- rising closer to five in anticipation of us coming has been more typical. Every stop we made today was fine with him, with no resistance: a walk in the park, a trip to the bookstore, lunch at a terrific deli we'd never been to before (Jim Alesci's Place Cafe in Solon) where he chose his food and patiently (!!!!!) waited at the table while Mom got and paid for the food; shoe-shopping; the Lake Metroparks Farmpark; a walk in the South Chagrin Reservation ("reservation" is what we'd call a forest preserve in Chicago, and make all the Cleveland jokes you like, the area has some fantastic stuff, especially in the natural beauty department); and a walk around the hotel's neighborhood while we waited for Karen to shop for dinner. And Ben enjoyed it all, without incident. Including dinner -- a few burgers cooked in our hotel room that added up to a full pound of ground beef which Karen is quick to point out, "That's the weight BEFORE cooking." His appetite does remain epic. We've commented more than once that he might have a future in competitive eating.

Speaking of which, a funny moment occurred when Ben went through all the empty dresser drawers in the hotel room, quickly opening and closing each one. I've gotten used to stashing food in the bottom drawer because Ben hasn't looked through dressers for a long time. Well, tonight he did, and when he opened the bottom drawer, there was the almost-full package of vanilla wafers, some of which I'd put in my pocket this morning to use as a bribe (or to use a better term, "reinforcer") if needed to get Ben to comply with something he's resisting (which turned out to be unnecessary anyway). Like the movie character opening a closet and grabbing a shirt without noticing the monster until walking  away and stopping cold with bug-eyes, Ben quickly closed the drawer and started walking away, then doubled back and bent back down to take a second look.

But even that turned out fine. I told him they were Daddy's, gave him one, and he was fine with not getting the whole package. In the past, there would've been trouble.

Then again, right after that, Ben tore Karen's shirt due to a damaged DVD sticking.

So, two steps forward and a short step back. Actually, it feels more like two pole-vaults forward.

We've been coming every other weekend, arriving late Friday and spending all day Saturday and half the day Sunday with Ben, though we've started to pull back to every third weekend sometimes. We know that he asks for us every day, more so on weekends, which does break our hearts, but he's kept productively busy, which keeps him happy. He still has outbursts of SIBs (self-injurious behavior, mainly whacking himself in the face, hard) that require physical restraints, but they occur less often, and he usually recovers quickly, and well.

Beyond his behaviors, he's been progressing in school, and the Monarch teachers have noted that they'd actually underestimated his abilities. Ben's finished many of his tasks and assignments much quicker than expected, and they're ramping up the pace accordingly. I've noticed that Ben's reading has improved already.

So, bravo Monarch, and bravo Ben.



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UPDATE: Friday, September 23, 2011 Streaker
One of the concepts Ben has never grasped is the sip. Hand him a glass filled with water or apple juice, and down it goes in one fast chug, and usually with some spilling onto his shirt. Then, since Ben doesn’t like any item of clothing to be damp, off comes the shirt.

Yesterday during his school day, Ben’s chugged glass of water dribbled further south, landing on his shirt and his pants, and soaking through to his undies. Into the bathroom he went to change, but he had a hard time finding the fresh clothes.

So, “Ben went streaking,” said Larissa when we called last night to check in. Autism, at least for Ben, means never being self-conscious, and the scene of starkly naked, 18-year-old, six-foot-three-inch, post-pubescent hairy-legged, happy-go-lucky loping Benny boy streaking out of the bathroom back into the bustling school hallway, with staff scrambling to catch and cover him, was easy to imagine and impossible not to giggle at. It reminded me of the day Karen and I toured the school before Ben was placed at Monarch, and seeing one of the students strolling through the hall sealed from head to toe in a special body stocking which he could see out of, but, to us, rendering him into something like a large purple walking banana, every inch covered up. On the other hand, here comes Ben, every inch gleefully out there. From fully covered to fully uncovered – another way autism is a spectrum disorder.

~   ~   ~

Addendum from Kari, Ben’s teacher: “Ben really did not go streaking at school. We are working on him pouring his own water and he overfilled his cup and the water spilled all over him. He kept pouring it out without stopping, so we went into the bathroom to change and he stepped out to look for some dry clothes. No worries. However, I would like this to be an IEP goal.”

It still cracks me up to imagine naked Ben casually heading out of the bathroom looking for some clothes. Hey, what the heck, under our clothes we’re all naked, right Ben?

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UPDATE: Tuesday, September 20, 2011 What a difference a month makes
This past weekend's was as good a visit as we’ve had with Ben, maybe ever – he was happy, relatively flexible, relaxed, and communicative. And this was the visit that began with “Ben vs. warts, part 2,” a trip to a doctor’s office that I was a little worried about. Last month, Ben’s doctor visit to combat his wartiness reportedly went badly, with a doc that apparently can’t deal well with patients like Ben. The warts that did get a slathering of ointment ended up burning off in what, to us, looked painful. This weekend’s appointment (at a different doctor’s office) went fine, with Ben happy as usual because he loves “going to the doctor,” something I’d hoped wasn’t altered by last month’s bad trip. The doc was also good at working with Ben as he doused the remaining warts, but this time with the directive to let him wash up after 6 hours.

School’s resumption has been good for Ben. What also has been helpful, we think, is the creation of Ben’s picture-calendar, allowing him to see when Mom and Dad will be back for the next visit. Karen and I were pleasantly, maybe ecstatically, surprised by the news that Ben had not been asking for us, and we attribute this, at least in part, to having the visual information about when our next visit will be. It feels horrible to think that Ben is missing us and pining for us to show up, especially when we’re not going to. For him to feel secure knowing we’ll be coming on a certain day is almost as comforting for us as it is for him. No surprise, either, that the e-mails that had been arriving regularly in August reporting Ben’s incidents of restraint have dwindled, going from several times per week to maybe once over the past several weeks.

And, Jeni's Ice Cream in Chagrin Falls, near Ben, serves Karen’s new all-time favorite ice cream, Salty Caramel. It’s next to a Starbucks, so Ben and Karen are both at their happiest in the little waterfalling town. Ohio keeps getting better.


Ben in the bath at the hotel, September 16, 2011

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UPDATE: Tuesday, August 30, 2011 August -- Ugh!
For many families like ours, August is the month that makes Hell sound restful. Regular school-year schedules have been gone for a month or so and whatever summer programming that was available is finished, the vacuum of unstructured weeks now filled with behaviors that had been itching to get out. When Ben lived at home, summer, especially the second half, was dreaded above all other seasons.

It seems that it’s that way everywhere with our kids, and just because Ben’s at the Monarch School doesn’t change much – just ask the staff. If you work with this population, you know what August can mean, and you desperately want it to pass not-too-slowly.

Burned-off, blistering sores don’t help either. When Ben arrived at Monarch, he was becoming a wart-farm, with his feet, legs, hands and a few other spots sporting the bumpy growths, and being contagious, they had to come off. After a couple of months of daily application of wart-removal cream that didn’t work, it was time for the heavy artillery. After an apparently tumultuous trip to the dermatologist, Ben returned with ointments on all the warts, and by the next day, they were all peeling into nasty, painful-looking red sores. Karen and I are hoping that Ben’s frequent need for restraints over the past month or so are symptoms of wart treatments and August blues, and will diminish as September rolls in:
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E-mail from Allison, Unit Director, August 2, 2011. “Ben had a good day yesterday during the camp but after dinner began to have some struggles. He had finished eating and was headed to the bathroom to wash up. Ben grabbed and hit a peer who was in the hallway and was redirected to take a break in his room. He started to hit staff and hit himself in the face. Staff attempted redirection, giving him squeezes and covers but he continued to escalate and had a restraint. After, he took some time to "chill out" in his room and then had a pretty good rest of the night. We did get Ben moved into his new room yesterday and he seemed to be fine with it. It gives him some more space to pace and just spread out.”
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E-mail from Allison, Unit Director, August 9, 2011. “Ben has been doing good this week. He has had a few moments of agitation but nothing too severe. We removed a lot of the books from the computer room and put in about 20-30 of his favorites to have him pick from. At times he was struggling because he would be trying to find a particular book but there were so many that he would get frustrated since he couldn't find it. We will see how this goes.
 
“Many of the warts have blistered. I think that some of his irritability over the last couple of days could be related to the fact that it might be hurting him since he has some open sores…”

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E-mail from Noah, Shift Supervisor, August 10, 2011. “Ben had 2 restraints yesterday (8/9/11).  He was prompted to use the bathroom and while in the restroom became upset and started to slap himself in the face.  Staff attempted to de-escalate him but he continued to be self-injurious so he was placed in a supine restraint from 4:51 - 5:03 pm.  He calmed down in the restraint but once he was let up he continued to display these behaviors so he was placed in a second supine restraint to help prevent any injury.  This restraint lasted from 5:03 - 5:06 pm.  Once he was calm he was given his weighted blanket and a glass of water.  His vitals were taken followed by dinner and the rest of his night went well.”
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E-mail from Allison, Unit Director, August 11, 2011. “It sounds like Ben responded well to the Skype session [that Ben had with us] last night! He has been having some struggles over the past couple of days and I think it’s a combination of no school for the past 3 weeks and having the sores from the warts (I'm guessing that they hurt during hygiene times). He does have times throughout the day where he is doing great though! Yesterday we set up a big projection screen in the Wuliger on campus and took all the kids over there to watch a movie. Ben enjoyed this and did well.”
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E-mail from Kristen, Shift Supervisor, August 11, 2011. “I wanted to let you know that Ben was in a supine restraint tonight. He had a good shift up until bedtime. The nurse came a little later than usual and he was prompted to go to the bathroom before bed and went without problems. He was verbally prompted to go back and flush and wash his hands and he immediately escalated and started hitting himself. Staff attempted verbal redirection, squeezes and singing. He continued to hit himself and staff had to step in to keep him safe. He started grabbing staff and bit staff on the arm. A supine restraint was utilized until he was calm. The restraint was from 8:47-8:58pm. He calmed, vitals were taken and he asked for squeezes.”
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E-mail from Kristen, Shift Supervisor, August 15, 2011. “Ben was in a supine restraint yesterday after lunch time. All morning he seemed very emotional-lots of extra squeezes. He started hitting himself in the face uncontrollably and when redirection to take a break and weighted blanket didn't help; staff utilized a restraint to keep him safe. He was in the restraint from 1-1:20pm. He calmed and took a break in his room. Had a good night after with only a few pinches. There were no injuries."
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E-mail from Alyssa, Shift Supervisor, August 17, 2011. “I was writing to let you know that Ben was in a restraint late this evening (8/17/11). He was laying down in his room and suddenly staff heard him hitting his face. We attempted to redirect him to use his words but he continued to hit his face. He was placed in a standing hold from 8:41pm-8:47pm. He was given water and a snack after. He did express that he missed his family in the restraint so we are assuming that this had a little to do with the aggression. Prior to this Ben had a perfect day. He watched Sing-Alongs with other clients and sang! He really did have a great day.”
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E-mail from Alyssa, Shift Supervisor, August 19, 2011. “I am writing to let you know that Ben was in a restraint today after you dropped him off on unit. We attempted to just walk him to his room for space but he continued aggressing toward staff. We put him in a supine restraint from 7:40pm-7:54pm. He was able to calm and express his needs. I apologize for the situation occurring and I know staff are sorry as well. Larissa did speak with me as well about having a conversation with Dr. Boyle about some possible med changes. I wanted you guys to know that I plan on following up with her about this to make sure Ben continues his progress here.”
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E-mail from Kristen, Shift Supervisor, August 21, 2011. “I wanted to let you know that Ben was in a supine restraint today. He had stolen food from another client-he was allowed to finish the food item but was redirected out of the kitchen. He immediately started pinching and grabbing staff. He was redirected again to covers/squeezes and a book. He continued to grab/pinch and started hitting himself in the face. He was restrained for safety. The restraint lasted from 10a-10:30am. He was offered a drink and took a break in his room to calm further. There were no injuries.”
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So August is ending and school has begun, and we’ll be seeing him this weekend. Onward.


Ben, August 19, 2011

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UPDATE: Tuesday, July 19, 2011
Karen’s e-mail to Allison, Director of Ben's house:

Hi Allison,
We had a really great weekend with Ben. We went to the Farm Park (very impressed) and although Ben wasn't too enthusiastic about getting out of the car, he went with the flow. [And getting a small bowl a locally-made Banana ice cream at the farm was a highlight – Dave] He also enjoyed a nice walk on that walking path on Shaker blvd.

We were very happy that Ben made it through the entire Winnie the Pooh movie [a very big deal; Ben has only made it through a movie in a movie theater a couple other times in his entire life – Dave]. Again, not too enthusiastic but Dave used the edible reward system and eventually, Ben settled in and enjoyed it. He was especially riveted by the credits. Dave didn't even use up an entire box of Skittles bought at the movie theater so kudos to Dave!

We also decided we should work on spending time just "hanging out" in the hotel room so that Ben doesn't have the expectation that we'll be driving around going places, to eat or otherwise, the entirety of the visit.

We took him to a couple of new places to eat: Chick-fil-A which he loved [and after an order of nuggets, he asked for a sandwich, but he didn’t trust it at first, eating only the bread and cheese and then getting up to go, until Karen tore the breast open a bit and told him, “Look Ben, it’s just a big nugget.” Bingo! Down went the chicken breast – Dave.], and Chipotle which he was very [very very very – Dave] suspicious of but ended up liking his cheese quesadilla. It's nice to not have to rely on McDonald's drive through anymore.

All in all, a great visit…

Thanks!
Karen

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UPDATE: Wednesday, July 13, 2011
From Allison, Director of Ben's house:

Ben has been having a pretty good week.  There have not been any major incidents this week.  He is working through his schedules well.  He seems to be a little sleepy this week but I think some of it could be the heat.  It has been in the 90's here since last weekend so I'm wondering if that just tires him out a bit.  The food plan is going well also.  Staff are using the edibles throughout his days.  I'm excited to be able to pick up some healthier things for him since I've seen him with a lot of pop tarts (which he just loves).

[“The edibles” refers to the new strategy of dealing with Ben’s anxiety over his access to food. Instead of restricting him from getting things to eat, he’s being given full reign, hopefully allowing him to relax if he isn’t thinking that he has to maximize every opportunity to stuff himself. Karen and I noticed that he seemed more relaxed on our visit, and though he did over-eat a bit, it was far less than what we expected. Also, Monarch has begun using edible rewards almost constantly, and so did we on this visit. These are tiny (like one Skittle, or one quarter of one mini peanut butter bite sized cookie), and it made a huge (positive) difference -- Dave.]

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UPDATE: Friday, July 8, 2011

From Kelly, Shift Supervisor:

Hi Dave and Karen,
I wanted to inform you about a restraint Ben was in this afternoon, 7/8.  He was walking in the hallway, passing another client.  The other client touched his book, and Ben became upset.  He started yelling, and hitting his head.  Staff tried to redirect him to his room to take a break.  Ben continued hitting his head and was placed in a supine restraint from 3:53-6:06 pm.  He was able to calm and took a break in his room afterward.  He's had a great rest of the night since the incident.  Please feel free to call or email me with any questions.


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UPDATE: Thursday, July 7, 2011
From Kelly, Shift Supervisor, and this was great to hear:

Hi Dave and Karen,
I've been working on finding some places for all of the kids to volunteer, or do some sort of community service.  I wanted to see if you guys would be willing to sign consent for Ben to participate in these activities.  So far, I have set up times with a place called Medwish, where they would be sorting and counting different medical supplies.  The other is an animal shelter with dogs only.  Let me know if this is something you would be interested in having Ben pursue, and which place (or both) you would want him to be.  If you need more information on either, just let me know and we can figure everything out.

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UPDATE: Wednesday, June 22, 2011

An update Karen wrote to Allison, Director of Ben's house at Monarch, who was on vacation last week, followed by Allison's response: 

We did have a great visit with Ben. We tried to find a balance between eating and other activities and I think we were successful. We have definitely noticed some progress on Ben's part, for example, he is somewhat more tolerant of waiting for his meals. Although he is anxious to get fed, he wasn't aggressive at all during the waits in Wendy's and in the hotel room while I cooked dinner. He absolutely loved the cheese omelets and buttered toast I made for him and was interested in helping me cook, i.e. beating the eggs and adding the cheese to the omelet. We took him to buy shoes at Famous Footwear and it was our most successful shopping expedition with Ben to date. He was able to try on two pairs and decided he wanted the Crocs (which he communicated by trying to leave the store wearing them). We took a drive to Pittsburgh to visit some friends who will probably visit Ben occasionally. Ben enjoyed the drive and the pizza he ate at their house. Also, aggression was minimal, in fact, I don't recall anything other than a minor pinch on my arm. Toileting was perfect. When we dropped him off the last day, Ben was very compliant and didn't seem upset. All in all, a great time was had! We talked to Dave [one of Ben's staff at Monarch] last night and heard that Ben had a very good day.

Allison's reply: Ben does seem to be able to tolerate waiting for meals better than when he first came.  He is such a fast eater and some of our other clients take a long time so it is sometimes tough for him to see that they are still eating and he is done.  We have been working to have him occupied by something else at the beginning of dinner and then have him join the group a little later which is working well for the most part.
Ben waiting at Wendy's, Saturday, June 18, 2011

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UPDATE: May 31, 2011
PHONE FIRST!
Ben and the phone have never gotten along that well, but tonight Ben and we had what could pass for our first real phone conversation. We called to see how his day had gone, and Ben was still up. We expected the usual conversation, which generally means he repeats what we say and says "Bye Bye!" ASAP. But this time, when we asked him, "What did you eat for dinner," after starting to say "Pizza,"  which could have been the usual generic answer to get the conversation wrapped up, he stopped and said, clear as day, "Spaghetti and meat balls." Karen and I looked at each other, and then came Ben's "Bye Bye!" When his aide came back on the phone, we asked if he really had spaghetti and meatballs for dinner, and we were delighted to hear that he did! That was truly a "phone first" for us, a bit of information conveyed in response to a question over the phone, completely unprompted. We also heard that he did NOT want the vegetables (which Ben always pronounces with each syllable getting full and equal value: "vej-ah-tuh-bulls") and fruit that were also on the plate. But he apparently did like the spaghetti and meatballs, so much that he even told us so.

Dashboard Splat

When Ben is in the back seat and finishes a pear or apple, he "throws it in the garbage." The garbage bag is on the front seat floor. Ben's aim is approximate. May 28, 2011.
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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 Second Year At Monarch;
Click for Ben's Third Year at Monarch (through 10/4/13)
Click for Ben's gallery of pics from Cleveland.