David Royko Psy.D
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The Chronicles of Ben Blog Archive
May 2011 - December 2015
The Chronicles Of Ben Blog is now
The Chronicles of Ben Royko - Severe Autism in Real Time
Click on the link and we'll see you there!
And here's the archive:
THE CHRONICLES OF BEN Blog
is all about Ben Royko, his family and Ben's life with severe autism. It's mainly written by me, Ben's dad, Dave Royko.
Beginning October 2015, most of my posts will be published simultaneously on this blog and the Huffington Post blog.
Click HERE for Ben Stories, including information about the eBook,
The Chronicles of Ben - Adventures in Autism
Prior to moving to this blog format,
earlier Ben Updates can be found:
HERE for Ben's arrival and first month at Monarch (May, 2011);
HERE for Ben's First Year at Monarch Updates;
HERE for Ben's Second Year At Monarch Updates;
HERE for Ben's Third Year at Monarch Updates (prior to 10/15/13).
Click HERE for Ben's gallery of pics from Cleveland.
Updates beginning October 15, 2013 are below, the most recent at the top.
And thanks for checking up on our big Benny boy!
The Ben Royko family
|Posted on July 2, 2015 at 12:20 AM||comments (0)|
Ben turns twenty-two on July 30th. His funding for Monarch in Cleveland ends the day before. Illinois and an adult group home -- yet to be found -- beckon. Today is July 1.
Four weeks to go.
We have been working on this for a year, feverishly for months. For fourteen years, I have had various written attempts of mine published to draw attention to autism and related issues.
Karen knows a ton. She is the assistant to a first-rate special needs attorney, and is becoming an advocate-ready expert herself. We have tried to meet, greet, or kiss the feet of anyone and everyone who might be able to help Ben and us.
Four weeks to go. 28 days. And so far? We just still don’t know. Only lots of irons crammed into too few fires. And Ben, our guy that this is all about, has no idea what’s going on now with us. Or what’s coming for him.
An addendum to the above about money. Funding for Ben isn't the issue. He's going to get what Illinois provides. The problem is that overall, Illinois's funding rates are the lowest in the country, and (in large part because of that) there are nowhere close to enough providers in existence. There are very, very, VERY few decent (and that's lowballing the term) places, period. Finding one THAT WILL ALSO WANT YOU in Illinois is like panning for gold. Like Karen says, "The situation is one of 'no vacancy,' especially for high needs individuals like Ben." It is why so many of us have to leave the state -- our HOME state -- and go elsewhere.
Easter Seals Guest Blog: Fathers Days and Nights
|Posted on June 19, 2015 at 9:10 AM||comments (0)|
My blogging today is courtesy the Easter Seals blog, where it is titled: Fatherhood with autism in the mix. Thank You so much to Easter Seals for asking for it, and continuing to help spread the word about autism.
This posting looks a lot prettier at the Easter Seals blog, which also includes a couple of pics, so I recommend you read it there. But if for some reason you can't get there (like if their website's down), I've included it here too.
And Happy Fathers Day to all of my fellow dads, whatever you're dealing with!
Fathers Days and Nights
(Fatherhood with autism in the mix)
Easter Seals guest blogger
June 19, 2015
Fact 1: Nothing changes a guy’s life like fatherhood.
Fact 2: Nothing changes fatherhood like autism.
To be clear from the outset, when I refer to autism, I mean the classic, severe disorder that negatively and profoundly impacts the person for their entire lifespan. That is our son Ben's reality. I am not referring, necessarily, to higher-functioning and Aspergers individuals. Many, unlike Ben, can speak eloquently – or otherwise communicate – about autism and what it is for them, often not seen as a disorder at all, but a difference. I am writing only about what it has meant for Ben and for us.
Rocking newborn Ben or his twin Jake as they fussed at 3:00am, almost 22 years ago, I was sleepless, sweaty (it was a hot summer), exhausted, and getting to know the local cop's overnight schedule patrolling the neighborhood.
Late night feedings are just one of countless little and big parental tasks and challenges - arduous, annoying, mundane, stressful, surprising, and required. They're ploughed through with eyes (and ears and nostrils) focused beyond. A potentially wonderful, or at least decent and reasonably happy future awaits, we hope -- for them and, unconsciously at least, for us too, Mom and Dad, with dreams for them and joy from sharing them for the rest of our lives.
One of those long nights, a favorite symphony of mine came on the radio as I held Ben, and in my drowsy, half-dreamy state, I pictured him growing into a conductor, the top spot in the classical music world, except for being a composer. So I envisioned him as the composer and the conductor. Then I imagined him simply getting to know and love this symphony, of my sharing this with him, discussing it with him, attending concerts with him.
OK, time for some of those changes.
Forget about Ben being a conductor. Or composer.
Forget about Ben talking about music beyond a word or two.
And forget about sitting with Ben in Orchestra Hall with the Mahler 3rd blazing.
But there's good stuff.
Ben is a musically perceptive guy, and he has strong preferences and loves. Even buried under his autism, with only little geysers of musical awareness bubbling up, we know for example, based on requests, he likes horns and brass, mandolins, violins, Schubert piano music, and Rafi (oh well). Overall, the guy has fine taste.
Our listening is done in the car, where he reads the stereo panel's display to see what's being played. Sometimes it's clear, but he often comes up with his own "interpretations" of what he reads.
Like "Freight Car." We figured out this means Nickel Creek's bootleg Freight and Salvage disc, because the display's limited length only gets as far as "Freight and Sa".
Then there's "Monkey's Music," which was Thelonious Monk's "Monk's Music." It wasn't obvious since Ben also loves monkeys, but it does suggest how strongly he feels about one of Monk's greatest albums.
And when he spontaneously belts out a chorus of something-or-other at the top of his lungs while loping through Target, it's always in tune.
So Ben's definitely musical. And I am deeply thankful for that.
The parental task and challenge for me - arduous, and required, maybe especially on Fathers Day, is to avoid thinking about what his musicality would mean without the shackles of autism.
But if I have a philosophy of life, it's that life is a re-frame. If the glass is half-empty, find a different glass.
Ben's aptitude for appreciating and loving music will never put him on a podium in front of an orchestra or behind a drum set driving a band (like his dad's younger days). Or even sitting at a gig, listening.
Those are "what if"s.
What IS, for Ben, is the pure joy he gets from music. The grin that appears when a favorite tune begins on the stereo, or a request for a certain disc is fulfilled, or a favorite ditty is sung to him, or a favorite ditty is sung BY him in McDonald's at fortissimo...
There has never been a composer, conductor, drummer or songbird who loves music more than Ben.
That makes my own heart sing. And even without the card, there is no better gift on Fathers Day.
Ben loves to sing bits of songs he likes, as well as his own ditties (such as "A la la la Bubbe; A la la la Big Bird; Hef! Hef!"), often at the top of his lungs, and anywhere he feels like it when inspiration strikes, from a walk in the woods to a jammed McDonald's line of startled customers. Or, like here, sitting on his bed, June 21, 2015.
Thank You Easter Seals
|Posted on June 9, 2015 at 1:10 PM||comments (18)|
This appeared yesterday on the Easter Seals website blog (they must've known it was my birthday), and a huge Thank You to them for shining some more light on this huge issue of our booming population of kids with autism becoming a booming population of grown-ups with autism.
|Posted on May 28, 2015 at 3:05 PM||comments (15)|
We just got the word from Monarch - After two months (eight weeks and two days) of big, heavy casts -- the first three weeks toe-to-crotch, then a new cast from toe to knee -- Ben is now ALL CLEAR! The cast was removed, he did great, and most importantly, the x-rays show that the surgery was a success, and Ben won't even need a boot going forward. He's done, he's fixed, he's healed, and he's happy about it. Looking forward to seeing him this weekend.
|Posted on May 21, 2015 at 1:30 PM||comments (0)|
A little light-hearted (no, really) addition to this week’s posting that I’d forgotten to mention…
There’s a Richard Scarry video where a character tries to juggle but the books go flying all over the place.
Who says people with autism don’t learn by imitation?
Regularly, we’ll be in the hotel room and, “Bang!” A book whacks the ceiling and Ben may or may not say, “Juggling!”
We’ll be walking through a parking lot and we might hear a book fluttering to the ground from above.
Sitting eating burgers at Five Guys and whoosh-flutter-flutter, hopefully landing across the dining room on the floor and not fries.
In the car, a book slams the ceiling.
We always lecture him:
“Ben, you’ll hurt yourself!” (It can be a hard-cover book as big as a dictionary.)
“Ben, you’ll hurt someone!”
“Ben, you’ll break something!”
And maybe the only one that would really matter to him:
“Ben, you’ll lose your book!”
This weekend, it finally happened. We were speeding along a highway with the windows open and I heard a brief fluttering of paper and by the time Karen and I looked at him, Ben was sitting with a hand in the air, but no book in it, having been juggled out the window. The rear view mirror confirmed that Ben now owned one less book. And was guilty of littering.
“See Ben, the book is all gone now! You juggled it out the window!”
He smiled and found an alternative in his big bag o’ books.
An hour later, back in the hotel room…
|Posted on May 18, 2015 at 4:30 PM||comments (578)|
Time continues ticking down to Ben’s return to Illinois, even if we don’t yet know where he will end up. We are working-working-working anxiously on it, having meeting upon meeting with service providers, people connected to service providers, families getting services from service providers, experts who know all about service providers, people working on becoming service providers… as you might guess, “service provider” is the most significant term in our lives right now.
In fact, today’s our 29th wedding anniversary, which we’ll be “celebrating” by having dinner and consulting with people in the Service Provider world. At least we really like them.
Ben has eleven days to go until he is released from the shackles of cast-hood, and considering how he gets around with it, he’ll think he’s flying without it, at that point a full two months after his surgery.
Stephanie, our favorite bartender, has just left “our” Cleveland joint that we hit in the evenings for dinner and alcohol after our days with Ben. No doubt her leaving is fate helping us with our pending Ohio separation (fate is always so friendly).
We don’t know Ben’s degree of understanding what’s coming. We talk with him a lot about moving back to Illinois, seeing Mom and Dad more often and his brother and his aunts and uncles and cousins, and the long, long drive he’ll get coming back. He seems happy when we talk about it. I just don’t think he really knows what’s coming. I’m afraid that 10 minutes after arriving, he’ll be ready to “go back to MBA.” When he left Wisconsin’s Oconomowoc Developmental Training Center four years ago, Cleveland-bound, he went straight from the front door to the car. We tried to get him to understand, to say good-bye to the people he’d been with for five years, but – nothing. Away we went, his former staff never (so far) to be seen by Ben again. We don’t know if this will be different, though it won’t be the first time he’s done this, so he might understand a bit. But really, would that be better or worse for him? Always more questions than answers.
This weekend was a nice one, though it started rough, with Ben going from giddily happy when we picked him up Saturday morning to a temporary bad mood in the car, directed my way. It was all because we screwed up in not realizing we were getting to Half Price Books 11 minutes before opening, which we tried to resolve by me going with Ben to get gas for the car as Karen stayed and waited for the book store to open. Ah well. At least Ben apologized profusely afterwords. Not just, “I’m sorry,” but “I’m very sorry.” I hope he really was.
And he, or that good ol’ fate, or both, managed to convince me that maybe he just might be. The next day, Sunday, we went to Target for some stuff not long before visit’s end, and Ben and I went to the book section. He looked at a bunch, and then handed me his choice.
Spot Loves His Daddy.
And how often have you gotten teary in Target?
A Kinder, Gentler Bulls Fan (me)
|Posted on May 15, 2015 at 1:35 PM||comments (20)|
Warning – read only if you care about basketball.
OK, I would’ve loved to see the Bulls go all the way (they lost last night's elimination game six of the NBA Eastern Conference Semifinals), but I expected Cleveland to beat them anyway because I didn’t think the Bulls would magically transform into a team that could string together enough good games to beat a really good team in a series (though I didn’t think it would end quite so dismally).
And maybe it’s because Cleveland’s been our second home for the past 4 years (and that city REALLY needs this, yes, a lot more than Chicago does), and James is turning out not to be the jerk he seemed to be five years ago, after the way he departed Cleveland for Miami.
Also, I’ve become a Cleveland sorta-fan. Bulls fans of, uh, a certain age (mine) remember the Jordan era teams that were Cleveland’s worst nightmare, year after year, like the most famous Jordan shot that short-circuited and dismantled the late ‘80s Cavs team that was built to go all the way. We were just starting our Cleveland sojourns in 2011 when Dallas was beating Miami and LeBron's super-trio for the championship after his first season there. The city’s LeBron hatred was palpable, and everywhere, including Corky and Lenny’s -- that's the chalkboard (above) that they put outside their deli after the 2011 Dallas victory.
Now our Cleveland soujourn is ending, and LeBron is back, loved more than ever by his little big town.
So it’s hard not to appreciate the schadenfreude of Cleveland fans who remember those years of torturous Bulls games a few decades ago, as they watch their Cavaiers take some vengeance. For the duration of the playoffs, I’m with Cleveland. And it’ll make it that much sweeter next year when the Bulls finally get their championship by knocking off the NBA Champion Cavs.
Go Bulls (next year). Go Cavs today!
Packets of Ben
|Posted on May 12, 2015 at 11:45 AM||comments (1)|
Now that his recovery from foot surgery is well along, we are deep into preparing for Ben’s Life 3.0. 1.0 was his first dozen years at home, before moving into 2.0 and the Oconomowoc Developmental Training Center (now Genesee Lake School).
3.0 is the rest of his life, “Adult Services” replacing school district funding, with very different rules, regulations and resources.
In (very) brief, dozens of “packets” have been sent to potential service providers (aka group homes) containing voluminous information about Ben, sort of a massive resume, including pictures, video, written descriptions, test results, medical information, etc. etc. etc. The goal is to find a good fit between a residence and Ben. We’ve gone on a few visits so far, with more scheduled. Ben turns 22 on July 30th. Deadline.
To put it mildly, it’s an emotionally draining process, and there’ve already been anguish and tears, along with some hopeful moments. Everything is unknown -- short term, medium term, long term. Really, really unknown. If that sounds like a recipe for stress, it’s gourmet.
Karen pushes Ben toward the ducks in a Cleveland Metropark, April 11, 2015
|Posted on April 20, 2015 at 10:35 AM||comments (0)|
Karen pushes Ben-of-the-Mega-Cast past an Autism Awareness poster in the Eton shopping mall yesterday, and I'm just hoping he doesn't feel too guilty for not wearing blue. And actually, I take it back -- of course, his cast is blue, and how appropriate is that?!?
Late Cab equals Cranky Me
|Posted on April 17, 2015 at 2:50 PM||comments (0)|
April 11, 2015, now at O'Hare heading back to Cleveland, where Karen and Ben-of-the-mega-cast await. Called 303Taxi at 5:25am to double-confirm (I already confirmed once last night) the order for 5:30am I placed yesterday just because I get compulsive about this kind of thing. I tried to use their app yesterday to place the order, and the app turned out to be useless. When I booked the cab over the phone, I told the order taker this, and she said that the app has all sorts of problems. Nice.
So after 10 minutes on hold this morning (and being told by their recording repeatedly to use their app instead), I was starting to freak out, because, again, that's the way I am with this sort of thing. I tried the app again which offered no option to confirm my taxi with my confirmation number. After 20 minutes on hold, and the cab being 15 minutes late, and calling American taxi, or at least trying but their phone answering system is even worse than 303 taxi's, because I was starting to worry that I would miss my plane, because, hey, that's the way I am with this sort of thing. After 22 minutes and the cab being 17 minutes late, I was really getting worked up, so when the guy came on the phone to tell me the driver was close, I probably wasn't very nice to him.
I also probably wasn't very nice to the driver when he showed up and blamed the system for being down. But all is well, the weather looks dandy, and I can't wait to see Karen and Ben. And by then, my blood pressure will be down from the head-pop level it was at while waiting for the taxi. Because, you know, I am a mellow dude.
Just ask the taxi dispatcher.
|Posted on April 14, 2015 at 10:50 AM||comments (0)|
What will Ben be leaving this summer when he returns to the still unknown future of adult services back here in Illinois? Why is it hard to think about, and maintain dry eyes? Why don’t I even feel like writing about any of this?
As we were about to head back to Chicago Sunday, with Ben still in his massive cast, Karen was feeling really down, having been there for two weeks.
"He'll be ok,” one his staff (such a sterile word) told us. “He's our baby too, you know."
OK, if that statement is distasteful or seems infantilizing to you, please move along. It means you don’t know Ben. Period. His big smile when we say he’s “Mommy’s baby, and Daddy’s baby too,” tells us his opinion, the only one that matters. Period. Like it or not, in the most essential ways, he is our eternal toddler. Take offence at our term only if you are generically offended by toddlers.
And his staff at Monarch are his mothers away from home, not just in their profound nurturance and love for Ben, but also, in true motherly form, their expectations and commitment to helping him reach his fullest potential.
That’s what he will be leaving.
And that’s why my heart is breaking.
Ben and Niza this week, outside of his cottage.
|Posted on April 2, 2015 at 8:45 PM||comments (16)|
Since I'm tired, stressed, fatigued, and even sick, I'm going to use Facebook postings to cheat and cobble something together. Thanks very much Facebook friends for all of your support. And there are no words to adequately express our gratitude to Monarch, the best staff for autism there is, and especially, Bridget, Jenny, Cornisha, Rollie, Ellen, Allison, nurse Jerry, and _________ (I always forget somebody), and the entire program. To say we couldn't have done it without you is not hyperbole put pure fact.
March 31, Tuesday, 9:48am, Cleveland Clinic: Ben's in surgery. The Ketamine injection that started the whole process brought big, apparently terrifying hallucinations, based on his thrashing, his wide eyes darting, his look of fear, and agitation until ten minutes passed post-injection and he started going under. Upsetting as all holy hell. I went with Ben to the operating room until he was completely sedated while Karen sobbed in the waiting room. Part one.
2:33pm: Ben's surgery is done. He's still out, with a huge cast on his right leg, toes to crotch, and the reality is setting in -- the hard part has started. If he could only sleep for the next three weeks.
Molly: Take Karen for a glass of wine tonight.
2:59pm: We will be at the hospital all night with Ben tonight Molly, and maybe more than tonight, so no wine for awhile.
6:13pm: Post-surgery woofing seems over so at least that's done.
7:21pm: Oh well, wrong about the woofing.
April 1, Wednesday, 2:14am: Still up with a hyper, not-happy-but-not-freaking-out Ben, who has been vehemently and constantly requesting to "go to the car" since he came out of the anaesthetic thirteen hours ago. One of my nicknames for him used to be the boy that never sleeps.
2:22pm: We will be leaving the hospital this afternoon/evening, and tonight we will be "sleeping" (haha) with Ben at the hotel, and somebody from his program will be there for eight hours, 10pm-6am, to help. Though he must be experiencing significant pain in his foot which the doctor warned us about, now that the heavy anaesthetic he got for the surgery and that lasts 24 hours has worn off, Ben's not showing it. According to the doctor, this pain is always the case with this kind of surgery, but with Ben, there is absolutely no sign of pain. Ben has always had a very idiosyncratic relationship with pain. I think years of not being able to communicate, whether a thought or a sensation, has created a pain tolerance, and pain acceptance, light-years beyond any of ours. And, it turns out that he is not the boy who never sleeps. He's the young man who sleeps for two hours, from 6am today until 8am. Karen is in her supercharged super adrenaline Super Mom mode, and she has gotten less sleep than any of us.
Molly: Did Karen get some rest?
April 2, Thursday, 11:20am: Molly, afraid not.
11:23am: Currently, I am standing outside our car because Ben's pissed because we're waiting for Karen at Barnes and Noble to buy him a book, instead of going right to the expressway to "drive fast," and he's let me know it, physically (Ben has a long reach). Cast or no cast, Ben's still Ben.
12:20pm: Since Karen's stress level was nowhere near high enough, I figured I'd help her out by getting sick. Karen's back at the hotel to try and catch a couple hours of REM, Ben's doing the same in his bed at Monarch, and I'm in the waiting room at a local Urgent Care joint, predicting an antibiotic. I was just jealous Ben was getting all the attention.
1:40pm: And an antibiotic it is, and it's my favorite kind, a Z Pac that I only have to take five days. Plus a narcotic cough medicine. I am a lucky dude.
So, it's 9pm and we're wrapping up day three. Ben will be here at the hotel tonight again with us and his helpful Monarch buddy, and tomorrow he'll be sleeping back in his room on campus. Getting him in and out of his wheelchair, to the car, the portapotty, and the bed (the only places he'll be for the next three weeks) is getting easier. We'll be renting a minivan tomorrow to hopefully make it easier for him to get in and out. Things will be day-to-day for awhile.
Karen in the waiting room.
The window sill of Ben's hospital room.
Ben tucked in for an afternoon nap today in his room at Monarch, with all the comforts of home.
Benny Bunny is a favorite character from an old video, and this is Ben's Easter tribute (I like to think, anyway) that I noticed today, hanging on the wall of his room.
|Posted on March 28, 2015 at 5:45 PM||comments (0)|
As part of our process of applying to adult placement sites for Ben, his Monarch staff have been taking some very short video clips, showing him in his current natural environment - the cottage he lives in. The clips show Ben happy and relaxed. I love them.
They also break my heart.
Ben will have surgery this week to repair his foot deformity and the break it has caused, and after he recovers from that ordeal, he'll be leaving his Monarch home and the people he loves in Cleveland and moving back to Illinois, and a completely different world. Ben has a couple more days before beginning this beginning of the end.
I don't know when Ben will again be as relaxed and happy as in these videoclips.
[Deep breath, be optimistic, deep breath, be optimistic...]
Karen and I still haven't finished the preparations for his post-surgery, but we're (uh, Karen's) working on it. One problem is that we really don't know what to expect. I have a feeling the all-nighters Karen and I take with him next week will carry a certain frightening nostalgia, since being up all night with Ben was common before he left home. We were in our mid'40s, and it wasn't easy then, to put it mildly. We're nine years older now.
We did have a little more autism-related excitement than usual this week, in the form of a film crew in our living room headed by an Academy Award winner.
Last year, I reviewed a book, Life, Animated, by Ron Suskind, about his son with autism, Owen, and his love for Disney films and how they were used as a bridge to the rest of the world.
Oscar winning filmmaker Roger Ross Williams is currently making a documentary about Owen and "Life, Animated," and the new therapeutic approach to autism it's spawned, and Ron suggested to Roger that I be included in the film. And I recommended (strongly) to Roger that, if I'm going to be interviewed, Karen should be interviewed too since she's the real autism expert between us.
So at 7:00am sharp they loaded in the equipment, and by 10:00am, the 90" interview with Karen and I was in the can (cool lingo, huh?) and the movie makers were done and gone. An enjoyable experience. How weird to say that about something related to autism!
Roger mentioned the potential for the film to debut at the Sundance Film Festival. I mean, how freaking cool is that?!? Wherever it is, Karen and I will be there. And then when Oscar season rolls around...
Then again, our talking heads might end up on the editing room floor. Actually, I don't think they edit that way anymore. So we might end up in a hard drive recycle bin.
But it was a nice distraction in a week that needed one.
So as Ben likes me to say, with exaggerated inflection:
And away we go.
One of the videoclips of a happy, relaxed young man.
Filmmaker Roger Ross Williams (left) with two of his three assistants preparing for our close-ups, March 26, 2015.
March 26, 2015
|Posted on March 17, 2015 at 9:40 AM||comments (7025)|
Ben makes up songs. One of his (and our) favorites that has popped out of him for years goes:
"Ah la la la Bubbe; Ah la la la Big Bird; Hef! Hef!"
Absolutely no idea what the hef hef means (Bubbe is his grandma), but those two hefs are always belted out with conviction, and sometimes he even adds another hef or two.
This past weekend, Ben premiered the latest addition to his repertoire, or at least composed a variation:
"Ride the Carrot; Hef! Hef!"
A couple of pics taken to and fro:
Fat 'n' Bald
Ohio rest-stop eagles for sale Friday, the one in the middle appearing to be the true American bald eagle.
Same rest-stop where the Bald Eagles reside, this time Sunday on the other side of the street (the westbound side of 80/90), where Karen and her diminutive buddy non-verbally expressed the official NGA (National Gnome Association) motto: My husband, Yes; My dog, Maybe; My Garden Gnome, NEVER!
|Posted on February 25, 2015 at 12:25 AM||comments (0)|
From the (indoor) waiting room of the Twinsburg, Ohio, Cleveland Clinic branch,
February 23, 2015.
Ben’s foot is broken. He also needs his Achilles tendon lengthened. He needs surgery and a lengthy recovery. None of this is elective. It’s necessary.
[Expletive deleted] [Actually, many really nasty expletives deleted]
For a little perspective, in November, Ben had to be admitted to the hospital and go under general anesthetic.
For a routine dental check-up and cleaning. And that wasn’t easy.
What is easy with autism? And this ordeal promises to set a new standard for Ben.
Of course we’ll be getting a second opinion, but the Cleveland Clinic doc we met with, and whom we like, is pretty certain.
In brief, part one will be the surgery followed by a six-week recovery. Typically, this would be a one-day outpatient procedure, and Ben would leave the hospital in a splint with crutches and instructions to keep all weight off of the foot. But this is Ben we’re talking about. His autism makes him his own worst enemy. As is so often, “typical” is, for Ben, impossible. He will have to be in the hospital overnight, at least.
And he will need a cast. Sure, casts stink for anybody, but for Ben it’s beyond putrid.
Ben’s cast will have to extend from his foot to above his knee, with leg bent. Otherwise, he will find a way to pull it off. Years ago, Ben pulled a cast off his arm as soon as he got back home from having it set, requiring a new cast extending up his bended arm past the elbow. That full arm cast was for a broken wrist. Also, the bent-at-the-knee cast is needed to keep Ben from putting any weight on the foot. With that cast on, he simply won’t be able to walk.
Ben will need to be in a wheelchair during his first three weeks of recovery. Someone will have to be with him 24/7, for everything from dealing with the bathroom to pain management. We’re told to expect pain. And we expect Ben will not be in his best mood. Would you?
Just imagine: Ben hates being still. His favorite activity is to take long walks, whatever the weather. When Ben is awake and not engaged in an activity requiring sitting, he paces. Knowing when Ben is in pain is also tricky, to put it mildly. When Ben had his arm cast removed, we found sores from the cast that we knew had to have hurt. But he never expressed it, or not in a way we could understand. Heartbreaking. Ben also has an unpredictable gut. Getting around a bathroom with that cast would be tough for anyone. He also loves taking showers. That’s out.
After three weeks comes the follow-up evaluative surgery. Assuming everything is healing right, Ben will get a walking cast for another few weeks.
The surgery’s scheduled for March.
Karen had to work hard not to burst into tears as the doctor laid it all out, and she doesn’t cry easily. (I do, so it’s a good thing I was back in the car with Ben by then as Karen and the doctor talked.)
Karen and I will be there for the first week post-op, and she’ll be back and forth throughout his recovery, via car or, if necessary, plane.
This comes at a time where we are deep into the stressful, time-consuming, unpredictable, complex, involved, and anxious process of arranging for Ben’s return to Illinois, after living out of state for nine years. His school district funding ends the day before his 22nd birthday in July, and the entirely new (for Ben, and us) world of “adult services” beckons.
One thing at a time, we like to say.
Half Price Books and Boot: A busted foot doesn't keep Ben from browsing in his favorite (non-food) store
February 22, 2015
A Couple (plus 1) of Pics
|Posted on January 25, 2015 at 9:50 PM||comments (0)|
From the "Ben and His Next Big Adventure (Cleveland)" gallery, a couple of moments from this weekend's visit.
Decisions Decisions: What you can't see in the pic is the Doodlebops DVD playing on the TV in front of Ben, but the Sesame Street video playing simultaneously on the iPad ended, so it's time to choose the next video, because, hey, who wants to watch (and hear) only one video at a time, January 24, 2015.
Nice Day For a Drive: Taking my one break from driving since Chicago on Thursday (not complaining a bit, I prefer driving to passengering) while Karen took us over hill, dale and freeway, and me sitting beside, and having fun with Ben -- he always loves words. And he always loves to drive, no matter the weather, spring, summer, fall, and W-I-N-T-E-R. Sunday, January 25, 2015.
Goodnight Encore : We left Ben in his bedroom for the night, laying in his bed watching a video, and as we were walking to the car, I went to his window and snapped a pic, and to my surprise, and his giggling delight, he somehow sensed me out there in the dark and popped up to take a look, January 24, 2015.
Beethoven Rules, Waiting Drools
|Posted on January 23, 2015 at 10:35 PM||comments (0)|
Ben’s gut has always been a challenge for anyone living or working with him. The words “go to the bathroom,” in years past, evoked instant panic since typically it meant we had little or no time before the sh*tstorm (and don’t worry, this won’t be one of >those< posts that are best avoided over dinner). These days it’s much, much better but even so, finding a bathroom asap becomes a primary need.
Various evals over the past 20 years have provided no answers, and the good news/bad news this week is, according to the latest, months-long evaluations, he doesn’t have celiac disease. The bad news is, he’s still got an unpredictable gut. An intolerance for dairy has also been established for him but that’s not anywhere near as serious as celiac since it only causes transient and temporary trouble when you eat stuff you shouldn’t but, as I understand it, celiac means eating gluten can cause damage to the gut. So score one for Ben. The fewer medical disorders the poor guy has to suffer through, the better.
And speaking of things medical, today was his last check-up at the Cleveland Clinic by Dr. Wexberg (Ben will return to Illinois by the time he turns 22 on July 30). Excellent and likable doctor, terrific staff, but for Pete’s sake how I hate the way doctor’s offices typically function. We actually called 15 minutes before his appointment, explaining Ben’s extreme difficulty in waiting and the volatility that can ensue, and checking how the doc’s schedule was going only 15 minutes after his lunch hour and if we should come on time. We were told he was running about 10 minutes late. So we got there 10 minutes late, and Ben happily pranced around the waiting room because he loves going to the doctor. After only a few minutes the nurse put us in an examination room and ran through her questions. Ben was tickled to be there, and was chattering and pacing and smiling and laughing. And there we waited for 40 more minutes.
He might love visiting doctors but Ben’s hatred for waiting is greater. By the time the doc came in, Ben was agitated, cranky, hollering and handing us his shoes over and over and demanding to “go to the car.” As soon as the doc had finished going over Ben’s bod, Karen stayed to talk as Ben and I headed to the car. I’d love to find a doctor’s practice set up for people like Ben, where the patient walks in, is shown right to an examination room and as soon as the nurse finishes her part, the doctor walks in and does his thing.
Ben takes a while to settle once agitated. It took us 10 minutes to walk the short (30 seconds otherwise) distance to our car in the lot, stopping every step or two and covering his face with wiggling stimming hands. Once in the car he continued his loud crankiness.
But here was a little silver lining, at least for me. Music was playing as we sat waiting, and he seemed noisily oblivious, until the slow movement of Op. 109 began. If you’re a Beethoven nut, you might feel, as I do, that his late piano sonatas are as great as anything he (or in my opinion, anybody) ever created.
Ben yelped and bitched and rocked and stimmed and Beethoven’s 30th piano sonata (Op. 109) began (a recorded live broadcast played by Elisabeth Leonskaja), and he kept right on protesting the outrage of the waiting he’d been subjected to in the doctor’s office. Until the last movement.
Beethoven described it in his score as “Full song with heartfelt emotion” (“Gesangvoll mit innigster Empfindung” and how lovely is that German language, huh?), and it’s another one of those transcendent movements that sets Beethoven apart from all other composers before or since.
Dead silence from the back seat. I glanced in the mirror, and Ben was staring straight ahead. A full minute passed before he shifted. When Karen got to the car a few minutes later, he was in a better mood.
When it comes to music, he can’t describe it or discuss it, but there’s no doubt that Ben loves it, deeply. I’m planning to set him up with an iPod-based music system when he moves into an Illinois group home this summer, and he’ll be able to pick and choose what he wants to listen to. He’s yet to request Beethoven in the car (though he’s asked for Schubert’s piano music, which I consider a glorious victory), and realistically, it’ll probably be Raffi instead of Beethoven if he ever chooses music at all over Barney or Doodlebops videos. But we can still hope. You never know.
Ben tries out a piano on a street corner dropped off as part of the "Play Me, I'm Yours" artwork adorning Cleveland, July 29, 2013
|Posted on December 27, 2014 at 10:30 AM||comments (4)|
Ben's door, December 26, 2014.
Ben looking hip in Karen's shirt thanks to getting his own shirt wet. A true metrosexual. And if it sounds like two videos are playing at the same time, that's only because Ben doesn't have a third video on the laptop going as well. Christmas Eve 2014.
And Speaking Of Autism...
|Posted on November 26, 2014 at 10:40 PM||comments (0)|
Some random thoughts…
One of Ben’s lifelong and frequent stims is cupping his hands over his face with fingers wiggling:
It is one of those things that we weren’t crazy about years and years ago and tried to discourage but have simply gotten used to. But today it occurred to me that I’m not sorry we failed. Way back when, we might’ve wanted him to stop because, well, it made him look so autistic. But he IS so autistic, and at this point, I think it isn’t a bad thing in that it lets strangers around him know. There’s less potential for misunderstanding because, at first glance, he otherwise doesn’t necessarily look so “different.” In a world where people have been killed for reasons that have more to do with misjudgment based on appearances, his stimming can come in handy.
Think the explosion of autism is mainly based solely on changes in diagnostic sensitivity and/or criteria? Absolute BS, period. Another couple of pieces of anecdotal evidence: Today, Ben brushed up against a woman waiting in line at a shoe store, as he often does. I said, “I’m sorry,” and she said, “Oh, that’s OK.” I said, “His sense of personal space is, um, different.” She chuckled and said, “My nephew is autistic.” Yesterday, a medical staffer at the Cleveland Clinic hospital where Ben had his dental work done was asking his usual list of questions. As I explained an answer about diet that is usually simple but not with us, he said, knowingly, “My 15 year old son is autistic.” This happens all the time with us. I’ve written about a few such occasions before this one, and they are only the tip of our iceberg. How many people were personally touched by autism when you were growing up? If you’re not a youngster, I’m guessing the answer is very, very few to none. If you don’t believe this is a real epidemic, then I have a bridge to sell you. We need the money for Ben.
Ben gazes upon an early winter Lake Erie at Geneva by the Lake in the northeast corner of Ohio, November 26, 2014.
A Simple Dental Check-Up
|Posted on November 25, 2014 at 4:25 PM||comments (0)|
This is Ben at 6:00 this morning as we were checking him into the hospital for a dental exam. He needs to go under with general anesthesia for dental check-ups. Getting the gas mask on him is a seven-person operation (he's a strong guy), with me holding his head and the others taking care of his arms and legs. Nothing is simple for Ben. Good news is nothing major was needed beyond filling some very shallow cavities. But the poor guy's been puking between drifting in and out ever since coming out of the ether, and his nose (where they insert the tube) has been a mini-gusher (nose-picking doesn't help). From hospital wheelchair to car to hotel wheelchair, he's now conked out in our room.
Ben got a dose of something-or-other for a much-needed settle-down when were in the prep room. It did help, though it was still a bit like alligator-wrestling once it was anesthetic time. But I'm never out of his sight while he's going through it, which I do think (or at least hope) might help a bit, at least internally. And he probably gets some little kick out of me in scrubs and a puffy surgical cap. He really likes doctors!
When we posted about this to our Facebook friends, we received a flood of support, much of it expressing kindness in the form of opinions that we are exceptional parents. We're truly moved by all of these thoughts and wishes and comments.
Honestly, however, and with no false humility, almost any parent in our shoes does exactly the same as we do -- and that is, whatever is needed for our kid(s). None of us can choose what characteristics or conditions they are or aren't born with. I very well might've jumped off a f*cking bridge 22 years ago knowing what was coming. Good thing we aren't fortune tellers. But Karen and I are simply Mom and Dad. And if we are "exceptional" in any way, it's only because we've had to be, like anybody else. Poor Ben's situation hasn't given us much choice. We love him to bits and that's all there is to it. Again, just like every parent. And again, I'm not discounting any of the wonderful, supportive feedback. We so appreciate every word.
Ben and ice encrusted-trees on Lake Erie at Presque Isle yesterday.
Ben and Karen at the Wendy's counter yesterday at dinner time (Ben's request) waiting for the food, which would have been impossible for Ben to tolerate 5 years ago, pre-Monarch. Not to say he's perfected it -- we had a less-good time at Denny's for lunch. Always work in progress.