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CHRONICLES OF BEN Blog
UPDATE: October 4, 2013 Tongue Out Of Cheek
Miley Cyrus? Please, what IS the big deal? Ben's been doing this shtick for years. The only issue I have is that she has never, not once, given proper credit to her obvious biggest influence:
UPDATE: October 3, 2013 Bendoscopy
When Ben was still a baby, his guts went bad. Imagine having gastric distress since your first birthday.
When he was a littler guy (he's not been truly little since his days as an embryo), maybe 8, we had Ben tested and scoped and -- nothing. Ben's recent tests tell us that he is now allergic to wheat, and there's a chance he has celiac disease, which would really stink because it is an autoimmune disorder and Ben would not be able to ingest even the tiniest bit of food that contains gluten...ever. And that encompasses many of his favorite things in the world. So in he went for the biopsy, via an endoscopy. In other words, our poor guy needed to be knocked out and a tube shoved down his throat.
Ben, as I've mentioned before, genuinely likes "going to the doctor," as he will sometimes say free associatively, at least as far as I can tell. And Cleveland Clinic gave him plenty to like. Their Children's Gastro unit personnel was flexible, accommodating, relaxed, and just nice and caring. Ben paced all around the nurse's counter and peeked into closets and when I mentioned how much he liked their water bubble lamp, they said that they'd had a similar item donated but couldn't display (a rule I can't remember), and gave it to us to take for Ben, still in the box. He stayed happy right up until it was time to get held down.
Ben refused to take a relaxant orally, which would not have been enough by itself anyway. There was no way he'd sit for an IV drip. The option of an injection would've meant a prolonged recovery time plus an additional med for the side effects, which typically include frightening hallucinations (bugs on the ceiling). We had prepared him with a written visual social story that included the anesthesia gas mask (we knew it would be the most likely delivery method), which we're pretty certain he understood, since he'd been through it multiple times before.
So with Ben on his back, I handled his upper torso and arms and hands (and have the scabs to show for it -- we forgot to trim his nails), while a half-dozen other hospital staff (docs and nurses) held the rest of him, several pair of hands just for his head which was thrashing, for maybe the 15 or twenty seconds it took for the gas to reduce his hollering to a mild sigh and, voila, Ben was ready for the exam as I, sweating, went to grab a quick bite in the hospital (we rose before 5:00 am to pick Ben up at 5:30 and get him to the hospital check-in by 6:00 for a 7:30 procedure and it was now almost 8:00).
I know from past experiences that the ordeal doesn't seem to have a long-term effect on his attitude about "going to the doctor." It is still a favored form of entertainment. Hey, maybe trips like this are his horror movies like "Carrie" and the standard check-ups are his "My Dinner With Andre."
And within moments of opening his eyes back in the recovery room, Ben's first words were, "Go to McDonald's." Very definitively. He was happy to get some Graham crackers and apple juice as we waited for the paperwork to be filled out. We were advised not to indulge his cravings, warning us extremely reasonably that if he ate the kinds of things that he was requesting, Ben very likely would do the Technicolor yawn in the car. But they don't know Ben. It is one area where he doesn't have a gastro problem, and is, if anything, a savant -- intake.
The last of our food stops on his way back was McDonald's. No problem.
We don't have the biopsy results yet, but as we headed back to our region, Ben spent the rest of his day playing hooky from school and relaxing on his unit with videos and favorite people.
Our day started pre-5:00AM
Ben around 8:00am, post-procedure, sleeping off the general anesthetic
Opening his eyes, Ben sat up and immediately said, "Go to McDonald's" but was happy to get some Grahan Crackers
UPDATE: September 17, 2013 Allergic Reactions
Ben’s among the many unlucky ones who got a side order of gut issues along with his main course of autism. If you’ve read much of our Ben stories, you know what he and we deal with, and have dealt with, since he was a year old. Ben was scoped and tested when he was a kid and we didn’t get anything that explained it, back when most of the medical world looked at parents like us, yelping about these issues, and dismissed it as yet more hysterical autism parent nonsense. (Refrigerator mothers were once the “cause” of autism, so at least we came into the realm after that Bettelheim-induced nightmare was past.) But the research continues to catch up and now the world knows that gut issues are typical for our autistic guys and gals, even if they haven’t a clue WHY.
This weekend, we met with a pediatric gastroenterologist at Cleveland Clinic. We went over some recent Benny blood tests, and the results, though not screaming “Celiac!” do suggest further testing for it, and that means an endoscopy and biopsy, to be scheduled asap.
One thing we do know from the blood tests is that Ben is allergic to wheat, and for that we’ll be seeing a different specialist. In anticipation of Ben possibly having to change his diet, we’ve “experimented” with some gluten-free things, and as awful as the bread with a one-year-away expiration date tasted to Karen, Ben wolfed it down. The allergy likely means that some changes are coming for his taste buds, but Celiac would be an entirely different level of change. We’ll see.
The appointment itself was a relatively happy experience. Ben always likes to “go to the doctor,” but more in theory and anticipation. Once we get there, he is Ben after all, and his (lack of) patience for waiting in waiting and exam rooms for more than twenty seconds can become an ordeal. But yesterday was fine, probably because of the lay out, the waiting area spacious with lots of room to pace and little alcoves to explore, and the exam room being a bit bigger than average – again allowing him to keep moving around. We were there for almost an hour, incident-free.
A small-world side note: When we got to the waiting room, we instantly noticed a good looking, obviously autistic blond haired teenage boy sitting with his Dad, who looked vaguely familiar. The Dad recognized us, and he turned out to be the chef we met briefly at the Beachwood Ballroom in April (see the top entry here: http://www.davidroyko.com/benupdates2.htm). The world continues to shrink.
Ben strolls along the beach (book in hand) at Presque Isle State Park in Erie, Pennsylvania, Sunday, September 15, 2013.
UPDATE: August 18, 2013 Ben Royko - Gardener
Here is a bit of video from this summer of Ben with two of his favorite people at Monarch, learning how to garden:
This two-and-a-half minute clip (thank you Bridget and Jenny!) is SO "Ben" -- his determination to make sure every drop of water is drained, tossing the can when done, chattering and singing away, and so obviously happy the entire time.
UPDATE: July 31, 2013 TWINS TURNING TWENTY!
Jake and Ben were born (in that order - two minutes apart) on July 30, 1993. Severe autism meant that their lives would quickly diverge, Ben moving to out-of-state residential programming before turning 13. But brothers they remain, and they spent their 20th Birthday weekend together. Actually, it began Thursday when Karen and Jake and I drove to Columbus, Ohio for Karen to attend an excellent Autism Speaks conference, "Treating the Whole Person with Autism: Care Across The Lifespan," on Friday and Saturday while Jake and I did some hiking in the woods and thumbing through some bins (in a record/CD store) before heading to Cleveland and the Big Benny Boy. Click for a little photo album from this weekend's 20th Birthday Celebration for the boys.
Ben up front, Jake and Karen at water's edge at Presque Isle State Park in Erie, Pennsylvania, July 29, 2013
UPDATE: July 22, 2013 In and Out
For more than seven years now, Ben’s been living away. For the first 5, he was ninety minutes away in Oconomowoc, Wisconsin, the relative closeness allowing us to never miss a weekly visit (if Karen or I got sick, one of us could still go, or we could find a car to borrow for the day if ours broke down, etc.). For the past couple of years, he’s been at Monarch in Shaker Heights, Ohio. While we were worried about the notorious bad weather that can haunt the stretch of 80/90 between Chicago and Cleveland, we’ve dodged the worst of the blizzard-or-hurricane (seriously - Sandy) bullets so far. So, for 7 years, we’ve managed to not disappoint Ben and cancel an expected get-together.
At the end of last week, our car developed a problem and our mechanic told us he couldn’t get the part and fix it until Monday. All of a sudden, we were confronted with the thought of Ben being told that we wouldn’t be coming – after asking for us every day since our last visit and looking at the calendar with us on it. I tried to be sorta philosophical. “This was bound to happen eventually; life has inevitable disappointments that he has to learn to get through,” blah blah blah, while feeling rotten. Karen simply tried to hold back tears at the thought of Ben not understanding why we’re not there as we had promised.
And so we were the first customers of the day Saturday at 9:00am when the rental car place opened and off we went. Karen and I were a little worried that Ben would get impatient (and mad) when we weren’t there in the morning, but he spent the day hanging out and napping and taking a long walk and was in a great and relaxed mood when we finally picked him up at 4:45 and took him right to Five Guys for a burger, followed by Half Price Books and a drive down to the pier at Edgewater Beach, topped off with ice cream that (he discovered) is sold there. Yesterday he was still just as relaxed and happy as the day before, and one of the things he enjoyed was a return trip to Geneva-On-The-Lake (where we’d been last visit) but to a different part (Township Park) before we said our good-byes mid-afternoon and headed back. There seemed to be no ill effects from the later-than-usual arrival followed by a shorter-than-usual visit. In fact, it was one of the nicest times we’ve had with Ben, without a single cranky moment or aggressive incident -- a visit short but sweet.
Ben strolls up the ramp heading for the end of the pier at Edgewater Beach, before discovering the ice cream stand, Saturday, July 20, 2013.
Ben looking like a green bumble bee in the big gazebo overlooking Lake Erie in Geneva-On-The-Lake's Township Park, Sunday, July 21, 2013.
UPDATE: July 8, 2013 Ben's Kind Of Good-Bye
The 4th of July Weekend seems to go hand in hand with emergency rooms, typically for things like blown-off fingers and alcohol poisoning, but you know, sometimes we families of autism just want to be like everyone else even if we have to be more creative about it. How about some severe vertigo? Yeah, that’s the ticket.
It hit Karen on Saturday, as we were returning with Ben from Geneva State Park up in the north east corner of Ohio on Lake Erie. We were planning to head back to Chicago late Saturday afternoon and as the time approached, Karen was feeling progressively dizzier. Her thought was to hit Costco quickly for a few Ben supplies before we dropped him off and drove home. As Ben and I waited in the car, my cell phone rang. It was Karen, now with nausea to go with her worsening vertigo, sitting on some sacks right outside Costco’s inner door, 20 feet away from where Ben and I were parked. She needed me to come help her to the car, at which point we had to decide: Drive to the ER (with Ben); call an ambulance for Karen while Ben and I head back to Monarch; or the three of us drive back to Monarch and decide from there, which is what we did.
Karen said bye to Ben and stayed in the car as I hurried him in and explained to staff what was happening and asked which ER they’d recommend. Karen was feeling even worse and we had to decide – ambulance or me. Since I knew where the hospital was, it seemed quicker just to get there and 10 minutes later, I was pushing Karen in a wheelchair into University Hospital Ahuja Medical Center’s Emergency Room. By then, the combo of vertigo, nausea, and panicky stress of the whole ordeal drove Karen’s blood pressure up to around skull-popper levels, and she could barely get from wheelchair to bed without tipping over.
And five hours later we were back in the car homeward bound and all was well, or almost anyway. The nausea was gone and although Karen was still somewhat dizzy, a medication they gave her actually seemed to be working, decreasing the vertigo until it was gone by the time we were back in Deerfield at 2:30AM (Cleveland time/1:30AM Deerfield time). The docs at the hospital weren’t particularly concerned since all of Karen’s other particulars checked out just fine, including her back-to-perfect (knock on wood, pooh pooh pooh, and all the other stuff I’ve learned from my mother-in-law must be said when inviting the evil eye) blood pressure. They chalked it up to a common cause of occasional vertigo best summarized as, “Who knows?” Karen will be following up with her own doc this week.
So how did Ben deal with this? It was probably the best end-of-visit he’s ever had. Ben (as I’ve said countless times) doesn’t like transitions, and typically when we take him back, if we hang around to talk with staff or do some organizing in his room, he makes it clear that it’s time for us to go. “Bye bye!” he’ll say hopefully and repeatedly as soon as we get him back while he seeks out a favorite staff member for squeezes or to put on a video, and none of that is supposed to involve us – we don’t belong there at that point and while he won’t complain, he’s clearly ready to move on, and move us on, post-visit.
So Karen simply giving him a kiss and a wave while remaining in the back seat, and me saying good-bye while practically throwing the armload of Costco supplies at a staffer as I turned to leave were more than fine with Ben. He was already blissfully tucking in for a pre-dinner nap by the time I headed back to Karen and the car and the ER.
UPDATE: July 7, 2013 Very Clean Hands
Having discussed food earlier this weekend, how about, briefly, the other end? Or at least the bathroom. (Don't worry -- nothing disgusting.) Ben's happy to leave a bathroom without stopping at the sink, but he's always willing to comply if told to wash his hands, even if the trip had been a false alarm or, as is often the case, something we did just to be sure. And if there are two sinks, he washes his hands twice. Each sink, faucet and soap dispenser gets equal treatment.
Stopped at a truck stop to use the bathroom this weekend, Ben and I headed in, and this was another trip with Ben quickly going through the motions without anything actually happening. But we were still in there for a few minutes, which concerned Karen enough to call into us.
UPDATE: July 4, 2013 The Very Hungry Boy
Communication from Ben is, to put it mildly, quirky, and often impenetrable. One of the ways we know - sometimes - what's on his mind is via quotes from favorite videos and books. Not always, as often the quotes seem random. But sometimes, it's crystal clear. One of his most quoted books and videos is Eric Carle's "The Very Quiet Cricket," which has always struck me as incredibly poignant, being about a young cricket who keeps trying to communicate, all in vain until the last page. Ben will say to us, "The very quiet cricket," which is my cue to say, "He rubbed his wings together, but nothing happened. Not a sound." To which I add, "Poor little cricket," and he's happy.
Another favorite Eric Carle book is "The Very Hungry Caterpillar," which is no surprise. I've occasionally referred to Ben as the title character, with the caterpillar's unquenchable (until the end) appetite, chewing through one delicious morsel after another, each leaving him still hungry. No doubt, Ben relates to that very hungry bug. In fact, Ben actually might've set a record today when it comes to food. Between his lunch at (by repeated requests) McDonald's at around 12:30 and his (by repeated requests) dinner at Five Guys Burgers at around 5:00, he didn't eat any snacks. For the very hungry Benny boy, that was impressive.
As we walked out of Five Guys, Ben requested Luna Bakery (a favorite spot), and we told him Mom would drop us off at the hotel while she went to Whole Foods to get him some dessert (cookies were requested).
As Ben and I got off the elevator heading to our room, there was no question how he was using Eric Carle to express himself. In a slow, deliberate cadence, Ben quoted the repeated refrain: "But he was still hungry."
Once in the room, I sat down and checked e-mail as Ben headed to the tray of fruit on the table. I knew he was eating, first, a pear and then a banana as I looked at the computer screen. When Karen got back and I noticed it was empty, I asked her how much fruit we'd had on the tray.
"Three pears and five bananas."
But he was still hungry. In a flash, the cookie was gone.
UPDATE: June 20, 2013 The OCD Of Ben
One of the hallmarks of Ben’s autism is the anxiety-driven (and anxiety-causing) Obsessive Compulsive piece -- ever-present and virtually untouchable when it comes to treating it. I have a hard time even thinking about what it must be like for him, haunted by a constant litany of obsessions and the compulsive behaviors that try to scratch a bloody anxiety-itch that is never soothed. Ugh! OCD is devilishly difficult to treat, even when it is the sole affliction of an otherwise-typical and verbal person. Lock OCD into the psyche of someone like Ben and the OCD is free to rule Ben’s psychic roost, out of our reach and, often, even our awareness.
On the visit before our most recent visit, Ben and I were at Target in the kids’ books section. He looked at a few before deciding (can’t recall which one) and heading up front to pay. Back in the car and driving, a tantrum began. “One Fish Two Fish,” he yelped, this being an old Dr. Seuss favorite of Ben’s of which he probably owns a half-dozen copies. We didn’t know why he was focusing on that book, but as we drove and the tantrum continued, we figured out that he might want to go back and buy yet another copy of it.
So back we went, but when we got to Target, Ben was still upset and in no shape to be out in public. I went in to buy the book while Karen repeatedly told Ben what I was doing and waited in the car with him until his aggressing drove her out of the car, at which point a stranger stopped to ask Karen if she needed help. (Autism Awareness has succeeded.) In fact, Ben had become so tightly wound that getting the book once I returned didn’t calm him down, having moved too far up the tantrum trajectory. Finally, I resorted to the “nuclear option” that we try to avoid – I told Ben we were going to go back to Monarch. This isn’t an empty threat but the only safe solution for when he gets like that. This seemed to have an impact, and with some apparent effort, he was able to move passed the tantrum and settle down for a decent rest-of-the-day.
However, it seems that the OCD itch had not been scratched. When we arrived a couple of weeks later for the next visit, his first request was to “Go to Target,” shifting all of a sudden from happy to pissed off and giving Karen’s arm a nasty scratch. We had no idea what was driving this, and when we got to Target and he was walking in front of me, his shoulder bumped into the corner of a display hard enough that I though it might’ve hurt. When I tried to rub it as he walked in front of me, Ben grabbed me and his nails drew blood from the top of my hand. So now we were all in really rotten moods as we careened through the aisles headed back to the books.
Ben grabbed a copy of One Fish Two Fish, and as quickly as the tumult began, it ended and he was happy. (It took a while longer to get there myself.) It was that quick and--ahem--easy. Our best guess is that his OCD “buyer’s remorse” needed satisfaction in just the right way. In our previous visit at Target, he had bought the “wrong” book, and though we drove back and got the “right” one (One Fish…), it was me who went in to buy it since Ben was still in freak-out mode, which may have been why it still took the threat of returning to Monarch and ending the visit for him to snap out of it. This time, he was able to make the trek to the book section himself, and that might’ve been the big difference.
I for one cannot imagine what it would be like to live my life, not only with severe autism, but with the OCD that comes with it. That Ben is such a delightful guy so much of the time while living with all of this is simply remarkable.
Whenever Ben sees someone with a camera, he says "Say cheese!" That doesn't mean he poses, or cooperates in any way if someone actually wants to take his pic. You have to be fast, lucky, and/or just keep snapping, and here he is enjoying the scenic overlook at Mohican State Park and Forest -- but not posing, June 13, 2013.
UPDATE: June 4, 2013 A Rational Response to Being Stuck In Traffic
From an e-mail from Ed at Monarch:
"We [Ed and Ben] went on a walk Friday afternoon and then got stuck in traffic for about 45 minutes on our way to McDonald's ... during which Ben yelled out ‘What’s going on here???’"
UPDATE: May 28, 2013 Ben For Hire, Part 2
One of Ben’s favorite KidSongs videos is all about trucks and one of the tunes is Eddie Rabbit’s classic trucker anthem, “Driving My Life Away.” And if trucking companies employed seat-warmers, Ben would be their all-star. He has no limit – NONE – when it comes to driving (or riding, really). For him, getting there isn’t half the fun, it might be all the fun.
So Saturday, after the “quick” jaunt (a couple of hours) up the coast of Lake Erie to Pennsylvania’s Presque Isle State Park (which has become a favorite place for us), we were getting ready to head back when Karen suggested we keep going, since Ben would want to go on driving anyway. Next stop – Allegany State Park in Salamanca, New York. Yep, NY (not C, though, at least not yet). We drove more miles with Ben on Saturday than we did to get to Cleveland on Friday. And what did Ben request when we picked him up for the next day’s fun? “Drive fast!”
So, anybody need an extra so you can use the carpool lane? Preferably (by Ben) for coast-to-coast drives, or even better, Cleveland to Tierra del Fuego. Bathroom stops not desired (by Ben), though highly recommended (by us). In fact, stops of any kind NOT preferred by Ben.
Our reflection as Karen loads chow into the back of the car, I snap a pic, and Ben waits happily in the back seat ready to "Drive Fast!" Next Stops: Pennsylvania's Presque Isle State Park on Lake Erie en route to Allegany State Park in Salamanca, New York, May 25, 2013.
And (May 29) Bill Hinchliff, good friend and former High School English teacher of mine and these days renowned renaissance man of architecture, said this after reading the above description of the day:
Fun to read, if it also made me feel exhausted to imagine those long rides with Ben. But that kind of makes him the quintessential American, don't you think -- a devotee of the open road, the endless highway, the way west, hit-the-road-Jackism, it's-my-way-or-the-highway. To quote the master, "Drive fast, dude."
UPDATE: May 15, 2013 Ben For Hire
We made a few family treks to Great America with Ben in his younger days, thanks to their policy of allowing people with disabilities to go in through the out door, entering via the ride exits and avoiding the line. This is the only possible way Ben could ever experience something like an amusement park. And while we might appear “lucky” to be able to do that (avoid the long lines), believe me, a day (or half-day) with Ben at Great America was always a HUGE challenge – the-minute-and-a-half ride was our only chance to rest and sit down, all the while hoping that the ride’s duration would pass uneventfully (without any behavioral or gastrointestinal issues from Ben).
So, I’m now offering up Ben’s services. Obviously, there’s a demand for help in addressing this great and pressing need:
Disney World Scam: Wealthy Moms 'Rent' Disabled Guides To Skip The Lines (And Shame Humankind)
Excerpt: “The New York Post reports that the latest ‘must have’ for wealthy parents, is a ‘disabled’ guide at Disney World, so that their darling children don’t have to wait on lines for rides. According an exclusive by reporter Tara Palmeri, Manhattan ‘one percenters’ have been passing around the name of a ‘black market disney guide’ -- an adult who needs a motorized scooter for mobility, and whose presence can take advantage of the rule that ‘handicapped’ guests can go directly to the front of the line and bring up to five other people along.”
So, any as*holes out there want to rent a human being? Ben’s available. That’ll be $10,000, please. Per ride. Maybe he’ll earn enough to be able to afford living in a decent place as an adult. I’m SURE these people would be happy to foot Ben’s astronomical living costs to avoid waiting in line. Seems fair to me.
ADDENDUM: September 23, 2013 - Seems like the Disney folks weren't too happy reading about the well-healed renting our friends and family members to cut in line. (And here's another article on that.) They've now discontinued the program and instead will use an alternative method that, hopefully, will be harder to abuse (but never underestimate the power of the always-entitled).
Jake (from front), Karen, Ben and me on Great America's Loggers Run, August 19, 2002
Ben watching one video on the TV and another on the laptop.
UPDATE: May 7, 2013 Why We Hate Autism (part 1 of 3,672,187)
As Ben ate his lunch in the hotel room on Sunday, his two-year anniversary of arriving at Monarch, I commented to Karen about what a great mood he’d been in this weekend. Karen reminded me that it wasn’t over yet.
She was right of course. I should’ve knocked on some wood.
Five minutes later, as we sat with him watching a couple of old favorites on video (“a couple” because he likes to have the laptop and TV playing separate videos, which he watches simultaneously), out of the blue, Ben started sobbing as if his heart were broken. Loud, plaintive, wrenching sobs. Not angry, or aggressive. Just deeply, gaspingly sad.
“Oh Ben,” I said as I rubbed his back, “what’s the matter? Does something hurt? Are you sad?” Stupid, stupid question because I should (I DO) know after 18 years of Autism that Ben would not—could not—answer my question. So we reverted to reflecting his emotions. “Oh Ben, you’re so sad.” “Oh Ben, your crying so hard.” And that seemed to have an effect. He repeated some phrases back to us while he sobbed, but seemed comforted by our acknowledging and labeling what was happening. After a few more minutes, the crying diminished, until he eventually was back to his happy self.
But we weren’t.
The degree to which we love Ben is equaled by our hate for Autism. Hate. As Ben sat and sobbed his crushing cries, we sat helpless. Sure, all parents know that helplessness of not being able to comfort crying kids from time to time. This is different. We can’t even grasp WHY he’s crying. Was it pain, like from a belly ache? Was it something happening with his meds? Was it a memory? Something to do with the videos? A fear? What? What??? WHAT?????????
“What is it?” is one of the phrases Ben haltingly blurted through his tears, one of the things he says when he’s crying, reflecting back to us what he has heard countless times when he cries or gets upset. It’s the non-answer answer we get to our question. Our own words, through heaving, halting breaths and tears.
It’s hard for us at these moments--for me and for Karen--to not end up the same way. But at least we could tell you why -- it breaks our hearts to see Ben that way. We only wish he could tell us what is breaking his heart.
For the most recent Ben Updates click on the
CHRONICLES OF BEN Blog