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 January 14, 2014 at 12:35 AM||comments (10)|
Happy New Year and we hope everyone's having a great 2014 so far. Especially, we hope fellow families with severe autism are having a good 2014, but I'm guessing we'll mostly settle for not-so-bad-so-far.
This weekend was another short in-and-out visit with Ben, dictated by weather and storm-timing. We dodged another bullet, driving back and forth without anything particularly nasty falling from above or freezing underneath. But that meant getting there at around 4:00 Saturday afternoon and heading back the next day (yesterday) mid-afternoon.
Ben was in a great mood, particularly Saturday (he tends to be happiest on the first days of visits), and he also seemed a bit more functionally verbal, the key word being functional. Ben script-chatters (various quotes from his own life and his TV life) and sings snippets of favorite ditties a lot, but often these things appear unconnected to anything going on around him. Sometimes it does seem like a scripted statement is related – drive by a farm and Ben might say, “Spot Goes to The Farm.”
Another language quirk is if Ben’s asked a “choice” question (“For lunch, do you want a cheeseburger or pizza?"), he’ll answer with the last item. Reverse the order, and he’ll reverse his answer.
But several times this past weekend, Ben gave a functional answer to questions instead of reverting to his usual way. It’s a big deal for Ben to get information from inside his head to another person. Yet another take-it-for-granted skill (funny to think of being able to answer a question as a skill) that most of us acquire “naturally” while Ben has to work like hell for it.
The gluten-free regime is looking like it’s having a positive effect for his guts. We’re also suspecting that dairy might also be something Ben could have to forgo. THAT would be a heartbreaker. Ben’s still enjoying his gastronomic life with various gluten-free substitutes along with plenty of things he loves that are naturally gluten-less anyway (all hail the naturally G-free Reese’s Peanut Butter Cups – or at least Ben hails them, and inhales them). Even so, it’s hard to have to keep disappointing him when he requests favorite places like Luna Bakery and Starbucks that are now off limits. If the dairy has to come out next, oy.
Gluten-free snacking is what allowed us to watch the previews, and then the clever Mickey Mouse short (or at least it seemed clever from what I could tell -- for us, movies with Ben are about Ben and not the movie), and the first 10 minutes of the latest Disney cartoon (er, I mean “animated feature"), "Frozen,” which looked like it is probably terrific. But, when the jelly candies and rice crispy treats were done, so was the movie for Ben. The rest of the watchers in the sparsely-attended theater (7:00PM Saturday showing of a not-brand-new Disney kids’ flick) were probably relieved to see us head out. Ben lived up to our nickname for him -- Pavarotti, and full blast -- when we walked into the darkened theater and sat for the previews. But he did seem to enjoy what he saw, so hopefully he’ll catch up with the additional 88 minutes on video some day.
And back to his verbalizing; as mentioned before, Ben loves to belt out a tune whenever and wherever he is, very often at the top of his lungs (like in the movie theater), though it’s not always music. A favorite Benny-yelp of mine is when he’s indoors in a public place and out of the blue, he says -- no, he bellows, “Quiet! Quiet! QuietQuietQuiet!” When he does sing, Karen and I have noticed that he’s generally on key and can carry a tune. Last week, we read an article about a recent study suggesting that a medication can cause a side-effect of perfect pitch. Depakote is the med, which Ben took for years.
Ben always strives to leave the juice-box bone-dry, January 12, 2014
|Posted on December 30, 2013 at 2:50 PM||comments (0)|
As the year 2013 ticks down, we don't need to remind ourselves that, given the tragedy of Ben's condition, he and we are fortunate that he has been in such a wonderful place for two and a half years and hopefully for another year and a half. If we had our way, he'd never leave. Bravo Monarch.
And here are a couple of pics from this past visit over the Christmas holiday, both taken on Lake Erie, the first in Ohio, the second in Pennsylvania (remember, Ben loves to "drive fast"), and both featuring his brother Jake, who was along for this trip. At one point, we asked Ben who his best friend in the world is. "Jake" was his response.
Blustery brothers Jake (left) and Ben at Geneva-on-the-Lake, the lake being Erie in far Northeast Ohio, on a windy, nippy and snowy day after Christmas, December 26, 2013.
And another snowy day, another beach for Ben (and Karen and Jake by water's edge), at Presque Isle by Erie, Pennsylvania, where Ben's expression can light up even the grayest of days, December 27, 2013.
|Posted on December 3, 2013 at 4:45 PM||comments (0)|
The headline is "Pollution Linked To Autism" and another big piece of the puzzle is put into place, and as each comes, it is more and more depressing, and woefully predictable. Is there any parent to severe autism that HASN'T thought, "Pollution?" when it comes to the trigger? And the thought that Ben's life has been shattered to smithereens by things predictable and avoidable makes me want to...I don't even know what. http://health.yahoo.net/articles/children/pollution-linked-autism
|Posted on December 2, 2013 at 3:05 PM||comments (0)|
I just found out (or had forgotten) that this past summer was the 20th anniversary of the release of Joel Frankel's album, "Don't Sit on a Cactus," which means Jake and Ben and DSoaC are the same age. Even though Jake's moved on to other (I won't say greener; they'd probably be more the color of scorched earth) Death-Metal musical pastures, Ben still includes DSoaC in his always-requested batch of mega-favorites on our weekend visits (along with Sam Bush and Nickel Creek). And not to say that after (literally) thousands of listens would I ever really need to hear it again, I am thankful that it is the kind of kid's album that doesn't make you want to revert to a childless state when hearing it. In fact, it is absolutely deserving of the status of "Classic." So, belated Happy Anniversary to "Don't Sit on a Cactus" and Joel Frankel, from the father of your biggest fan, Ben Royko.
https://itunes.apple.com/us/album/dont-sit-on-a-cactus/id219171136" target="_blank">Don't Sit on a Cactus - Joel Frankel
|Posted on November 12, 2013 at 4:45 PM||comments (352)|
Here are a few photos from the past month.
ON THE ROOF: Ben on top of the parking garage at Cleveland Clinic, October 14, 2013.
WAITING: Ben in the waiting room at Cleveland Clinic, October 14,2013.
GOING...GOING.....GONE: In the back seat October 13, 2013 at 11:50, 11:57, and Noon.
OVERLOOKING FALL COLORING: Ben at Mohican State Park in Ohio, November 10, 2013.
DAMN! Ben and Karen at Pleasant Hill Dam in Ohio, November 10, 2013.
ODOMETER: Two years and eight months after buying the Hyundai and taking it to and from Cleveland every other weekend, this return trip made it an even 100K on 80/90 somewhere in Ohio, November 11, 2013.
|Posted on October 25, 2013 at 3:55 PM||comments (1)|
Thank You Mike Miner.
|Posted on October 25, 2013 at 9:55 AM||comments (0)|
A big Thank You to Eric Zorn.
|Posted on October 22, 2013 at 2:40 PM||comments (5)|
I just published (through Smashwords) an eBook, The Chronicles of Ben -- Adventures in Autism. This is a summary about it:
Bringing together features that first appeared in the Chicago Tribune Magazine (cover story), National Public Radio’s 'This American Life,' Parents Magazine, the Chicago Reader, The Week Behind, Australian Broadcasting Corporation's 'All in the Mind,' the CHRONICLES OF BEN Blog, and previously-unpublished material, The Chronicles of Ben - Adventures in Autism offers in eBook form the ongoing stories of Ben Royko and his family's ongoing struggles with severe autism, as told by author/psychologist David Royko. "The response has been massive" (Rick Kogan, Chicago Tribune), is typical of the reception Dr. Royko's autism-related work has received. This book presents, in chronological order, an intimate and engaging view from the inside, for parents, professionals and anyone interested in life with severe autism. Also included are several book reviews relating to autism and life with Ben, and selected photographs by the author.
I’ve already been fortunate to have Chicago Tribune columnist Eric Zorn write about it yesterday on his Trib blog (Change of Topic). Today, he e-mailed me with a question about Obamacare and its impact on autism-related coverage. I ended up responding with a somewhat extensive reply (with some essential input from Karen), in part describing how we got to where we are today (living “multi-generationally” post-bankruptcy). Since sending, I’ve decided it would be worth making into a blog entry – so here it is (and thanks, Eric Zorn, for asking):
When Ben was diagnosed over 18 years ago, the only option for addressing autism (that had any research-based scientific validity) was Applied Behavioral Analysis (ABA), which in a sense was "brand named" "Lovaas" because Norwegian/American psychologist Ole Ivar Lovaas was a guy that did the research and became prominent. In many ways, the scene hasn't changed that much, though there are proponents of other approaches to autism (medical, dietary, behavioral, etc.), but in a huge way, things have improved because insurance companies are starting to cover ABA, and there are many more qualified providers for Applied Behavior Analysis. In addition, if you have excellent insurance (or are rich), there are good clinics where virtually none existed before. 18 years ago, we had to create an ABA program ourselves, and pay every penny, hiring a team of therapists and the expert/trainer who ended up moving out of state immediately after getting everyone trained, leaving us on our own to run the program.
That was only the beginning of the mountain of costs that we, and everyone like us, had to cover out-of-pocket. As Karen has said, we had to literally beg, borrow or (figuratively) steal to get whatever services and therapies we could for Ben, and it added up to at least $30,000 or more every year. The begging brought some help from friends and family (my father helped a lot when he was alive but Ben was only 3 years old when Dad died, and every cent he left Karen and I disappeared into autism-related costs). We moved from Chicago to a suburban neighborhood we could barely afford for the benefit of the school district and its services, and to be closer to (helpful) relatives. We used credit cards and money from our home equity to help pay for everything. (Keep in mind, the rest of normal life adds expenses too, like current significant college costs for Ben’s twin brother who does not have autism). Borrowing against equity in our house, over and over, stretched us to the breaking point that finally came with the economic crash in 2008, resulting in bankruptcy and a race to see if we could sell the house before foreclosure happened. We were able to short-sell, and now we’re without any savings but are very lucky to have exceptional family members (Karen's folks) who have welcomed us into their home, where we now double-up and are even trendy, "multi-generational living" becoming a buzz-phrase since the real estate market crashed. Living with them allows us to afford the Cleveland visits to see Ben, and his brother’s college expenses.
Some of the specific out-of-pocket costs we've shouldered since Ben was diagnosed at age two: ABA (behavioral therapy) -- the recommendation was to do 40 hours per week to "recover" Ben, which included the costs of starting the program, hiring and training therapists, and materials; Speech therapy; Occupational therapy; Play therapy; Floortime therapy; Recreational therapy; Therapeutic horseback riding; Psychiatric consultations for medication to control aggressive and self injurious behaviors; Medical appointments and costs for tests and medications for seizure disorder and gastrointestinal issues (ultimately and recently including a diagnosis of celiac disease); Costs of medications; Respite care (more expensive than babysitters because Ben was so difficult to care for, made more challenging because it is very hard to find good people to do this work); Attorney's fees for assistance with obtaining appropriate educational supports and interventions at school; and the costs of traveling to visit Ben every two-to-three weekends ($1500.00 month) since Ben’s move to Cleveland in 2011.
Another big impact of autism for us is that Karen has been Ben’s case manager, which meant she could not be employed outside of the home, reducing our income, while still requiring costly help in the home. In addition, I have had a hard time generating additional income beyond my day job, having attempted more than once to establish a part-time private practice on evenings and weekends, which would fall apart due to the constant and unpredictable demands of help being needed at home – reasonable reliability being an important part of being someone’s shrink. Not surprisingly, the ongoing stress of everything has induced some medical problems for both Karen and me.
Looking (not very far) ahead, we will need money for Ben's adulthood, and lots of it. We've been told again and again by experts that if you want your adult disabled child to live somewhere decent with good care and something meaningful to do during the days, it’s currently a Do-It-Yourself world -- you have to create it yourself. We do have ideas. One, for example (and we’ve also been advised to have a Plan A, and a Plan B, and C, and D…;), is to create an agricultural community for adults with autism, such as Bittersweet Farm in Ohio, but this takes an incredible amount of resources and effort.
As for Obamacare and services for autism, here is an Autism Speaks link that specifically addresses that: <http://www.autismspeaks.org/advocacy/insurance/affordable-care-act/aca-and-autism-community> The biggest benefit of the ACA for Ben is that he can remain on our insurance until age 26. That is huge. Coverage of benefits that fall under mental health may improve. Ben will not be excluded from coverage due to preexisting conditions, of which he has many. Lifetime caps on benefits are eliminated (we think). We believe there will be other benefits. What it means to be "severely autistic" is that you have the core features of autism plus co-morbid conditions. Ben has many of these, including but not limited to intellectual disability, behavioral challenges (aggression and self injurious behaviors), lifelong gastrointestinal issues that have been assessed from time to time and only recently identified as celiac disease, seizure disorder, learning disabilities, receptive and expressive language disorders, sleep disorder, etc. etc. etc. So, Ben is a medically complex individual requiring a number of treatments, therapies and interventions, all costly, and many, like ABA and general anesthesia for dental work, are not covered at all or covered at a very low rate by insurance. And we are fortunate to have good insurance. Again, some of the therapies, such as ABA, are now covered by some insurance plans for some people. The Affordable Care Act will help, though a single-payer plan would be better (in our opinion).
And not only are we not alone, we’re common. I remember recently reading a study that was done at Harvard citing medical-related costs as the biggest cause of bankruptcy, to the tune of 62% of all personal bankruptcies. Interestingly, 78% of bankruptcy filers had some form of health insurance, challenging the myth that medical bills affect only the uninsured. Serious medical problems (like autism) can easily result in hundreds of thousands of dollars in medical bills and obviously can quickly wipe out savings and retirement accounts, college education funds and home equity. After that happens, bankruptcy may be the only option left, whether or not the patient or family was able to apply health coverage to a portion of the bill.
The closing lines of this CNN story from 2012 describes us and many others in the same boat:
The Affordable Care Act ... is meant to help more people get affordable health insurance coverage, but it is uncertain what impact that will have on the rising cost of autism, [president of Autism Speaks, Mark] Roithmayr noted.
Still, "without it, we've got one million families with the potential of going bankrupt," he said.
|Posted on October 17, 2013 at 12:05 AM||comments (0)|
One funny thing (oh yeah, hilarious) about Celiac Disease, we’ve now learned, is that the process of diagnosis is not simply a matter of “blood test results mean yes or no.”
And though Ben’s still technically in the diagnostic process, it doesn’t look good. His blood test suggested he might have it, and the biopsy from his subsequent GI scoping tells us that, yep, he probably does. But he ain’t done yet – a couple of months of the drastic dietary change that comes with Celiac is the final step, and if his guts finally straighten out, that good news would confirm the bad news.
The upsides (assuming he has Celiac Disease which is the reasonable assumption): 1. Ben will have a better quality of life without the pain and discomfort we can only assume he has had for years, as well as the gastro-unpredictability he deals with; 2. Ben has super-cook Karen for a mother, who will help to keep him well-stocked with well-chosen and, as much as possible, homemade gluten-free foods; 3. Our world has many people eating Gluten-free for a variety of reasons these days and that has meant a booming GF (hey, I’ve learned another new acronym!) industry and wider variety of foods (which parallels the Autism sections in bookstores where two decades ago there was one Autism book), and; 4. Hope-against-hope and maybe, just maybe, some of his autism-related deficits (cognitive / behavioral / communicative) might be positively affected.
OK, the downsides, which are fewer in number but immense in misery: Ben will likely never understand why oh why he cannot have so many of his favorite foods, and he is a guy who lives to eat. This will affect where he can go in “the community,” and will likely mean rough spots (including behaviorally) in the long process of his getting accustomed to his new gastronomic life. “Rough spots” is my nice euphemism.
When we’re through with this diagnostic process, we’ll move on to checking him for a possible dairy allergy.
Keep in mind, he’s been through all of this testing before, when he was younger, and Celiac was ruled out. We have now learned that it is a genetically-based condition, and it can develop in a gut where it once didn’t exist. And that’s what’s happened for Ben. It’s a serious problem, and can develop into more horrible stuff if not treated aggressively (through diet).
So, onward and onward. Upward? That would be nice.
Ben chooses a treat during his last Gluten-filled weekend, October 12, 2013