Wednesday, June 29, 2011
Do you remember when, during the Academy Awards, when they used to say 'And the Winner is...?', and now, for some screwed-up politically correct reason, they say 'And the Oscar goes to...'. That is the SINGLE reason why I think I don't like watching the Academy Awards. That, and the fact that they increased the nominations to ten films.
That is such bullshit.
As a society, why are we so afraid of real competition? Why are we so against the idea of there being a winner and a loser? I know losing sucks, believe me, but it really diminishes the sweetness of the taste of victory every time you water it down and make it easier to win.
I realized I had not really 'won' anything in a LONG time when I was reading someone's blog and saw a link to a blogger site where there were annual 'blogging' awards. I clicked on the link and I went there and visited and when I saw the types of blogs that were winning in certain categories I thought to myself...
Hey. How ya doing? You're eyes are a particularly lovely shade of green today. You know...you haven't won any awards in a LONG time. Damn...you really need to trim your nose hair, it's out of control. And dude, drop a few willya? C'mon, when I said put on the Big Boy Pants that is NOT what I meant...
Oh...sorry...didn't mean to give you THAT much a glimpse into my thought process. Got a little...carried away.
Anyway, back to what I was thinking, gotta give you some history...I'm not exactly the 'award-winning' type. It isn't that I haven't had the honor of picking up a few here and there in the course of my life, but it just isn't the kind of thing that I am often exposed to.
When I was but a wee lad, I got the standard awards they give out to all kids so they don't feel like complete pathetic losers all the time, but I wasn't bringing home the gigantic trophies (or the poon-tang) that the guys who played on the football team or the lacrosse teams were. That started to change for me a little in High School when I gave up music and focused on art and I was able to snag a few awards that I still keep (though I tend to keep everything, so that isn't as hugely significant as it sounds).
One of the highlights of that High School Award experience was that I won Best in Show in the annual Art Fair two years in a row, in my junior and senior year. I was the first kid at my High School who ever did that. Last time I checked, which was around 8-9 years ago or so, no student had done it since. Maybe that record still stands, I don't know. For some odd reason? I hope it still does, though I wouldn't be crushed if it has been broken, I still in a small way hope it hasn't.
It was not without controversy however.
In the first year, my junior year, I won it with a colored pencil drawing of an old man playing the violin. A drawing that hangs in my Mom's computer room to this day, I typed several of these blogs recently while sitting at her folded up sewing machine right beneath it. No idea why I drew that, it is not necessarily my usual cup of tea as far as subject matter, I just happened to go down that road one day and draw it.
It is one of the few drawings from that era that survives, because I gave most of that old stuff away, and a lot of it was either tossed or forgotten about. But my Mom dug this one, and she matted and framed it and it remains in pretty much the same condition as it was in 1984.
In my senior year, I happened to be dating a very cute girl at the time, who also happened to be a terrific artist. She had a drawing she was working on that was, simply put, breathtaking.
She was a photo-realistic artist, my style was a bit more fanciful, more stylized, but bolder...I relied on technique and size much of the time to make up for my shortcomings in my ability to render things as realistically as other people could.
Her piece, which was smaller, probably 11 x 14, black and white, if memory serves, was of some child or something. A surefire winner as far as subject matter in High School art contests. Kids, puppies, shit like that if you do them well always tug at the heart strings of the judges.
Mine? Well...remember the scene in Twilight Zone: The Movie, where the little boy who could make things happen makes a giant evil rabbit come out of his Uncle's hat to devour him? I drew that, but with my Step-Father taking Uncle Walt's place.
It was not 11 x 14 and it was NOT in black and white. It was in color and it was 24 x 36. It was definitely an eye-catcher. I have a SLIDE of it, and if I knew how to scan in slides I would scan it in to the computer...just don't know how.
Still, the odds-on favorite for the Best in Show Winner was my girlfriend's piece. And truthfully...if it were me? I'd be voting for it myself. It was BEAUTIFUL. But a month or so before the competition, it disappeared from the storage room in Mrs. Dunaway's art class.
Guess who was the number one suspect?
Yeah...and I was DATING her at the time!!! Can you believe that? But there were rumblings, oh boy, were there rumblings. Now my girlfriend, thankfully, did not believe that I was capable of such an act. And some of my closer friends did not believe it either. The girl who would become my next girlfriend who was probably my best friend at the time next to my friend Mark did not believe it either.
But a lot of people did. And when I say a lot of people, I mean a lot of people who gave a shit about that sort of thing...not the people who were not in that world, certainly. It was FRIGGIN' HIGH SCHOOL for cryin' out loud.
Needless to say, without her piece in the show, I won hands down.
And no...I did NOT take her artwork to sabotage the show, in case you thought I was leading up to a confession. I'm just writing an extra long blog today for Claire, since she loves me so much.
I really haven't done much in the way of awards since then. Very briefly, I got an honorary mention in a contest for a Maryland poster thing in my early twenties. That was weird. I really didn't put in much effort, and it showed.
After that? I went pretty much award-less until my thirties, and then picked up a few in the form of Industry Awards when I worked for Palisades Toys. These aren't necessarily the kind that come with trophies, but they are accolades and they are special, don't get me wrong, but they aren't awards in the traditional sense that you (the 'typical' reader with 'atypical' kids) understands awards.
For example, the kind of awards that Michael Crawford gives each year...I was involved with that as a part of Palisades Toys and in that link we did pretty well back in 2003. Still am involved, though now as a judge, in his Poppies awards, not as a recipient anymore since I am not working full-time in the business making anything.
ToyFare, back when it was a real magazine on the newsstands, used to do its annual awards, and we won some of them during our run at Palisades, which was always fun. Some of the other press sites also gave us some of their awards, and while often, like with Michael's site, it was mostly a digital experience, some of the sites actually would print certificates and give them to us at Toy Fair in New York and stuff which was always a hoot.
Most of the time, those items all got put up in the office at Palisades somewhere. At the end, I was given some of them, which was pretty cool. I am the kind of guy who is very sentimental about shit like that. I tend to hang on to a LOT of stuff, even ticket stubs, of things that matter to me from events or periods from my life. That's just how I roll.
I even keep the little snippets ToyFare used to print in their mag. I consider them awards, like their Toy of the Month, or even when they would run something of ours in their Twisted Toy Theatre and the like. It was fun stuff.
Since leaving Palisades in 2005, I haven't received any official 'awards', per se, and it isn't like I've really been looking or expecting to find any either. I'm fairly grateful for the things I HAVE received in contrast to all the turds that got piled on our plate since 2005, to be quite honest.
It's not been easy to get to that place either, and I can't say that I am in that mental state every day, either. In the words of Bono...some days are better than others.
But for some reason, when I saw the link to the Blogger's Choice Awards for 2011 my interest was peaked. When I saw the kinds of blogs that were WINNING in the categories of Best Parenting Blog and for Hottest Daddy Blogger I almost hit the roof! That's just wrong!
So I nominated myself and figured I'd give it my best shot. I created some tabs on the right and if you want to go sign up and vote for me, please do. I mean...I think this is fairly do-able yeah? And if not, I'll start looking into maybe some bribes or something.
I'm not above that.
Hell, I wouldn't mind getting the readership up to 200, or learning some tips (other than shortening my blogs, which is doubt is within my capabilities) to grow the readership from some of the experienced Vets out there who seem to have the gift of being able to generate comments in their blogs effortlessly. It's amazing.
OK, I think I'm done.
Are you done? No shit? For real? Yeah, you're done. Now go trim you're nose hair. And while you're at it, hit the ears. Looks like a Brillo pad in there...
Tuesday, June 28, 2011
People always send my stuff to try to get me to laugh. Not an easy task. Actually it is, but don't tell anyone, or they'll stop sending me funny shit. This one was sent to me courtesy of my Mother.
Thanks Ma...I LOL'd.
Oh...that means 'Laugh Out Loud', by the way. Not sure if you are hip to that kind of lingo and all.
Monday, June 27, 2011
Gotta keep this short.
Made it back home. Record time. Even faster than going out TO my Mom's house, don't know how I managed that. I barely registered on anyone's radar when I got here. People just had shit to do. I get it, I really do. That's the way of things. I'm a big boy, I can take it. And I still wouldn't trade it for the alternative, you can bet your bottom dollar on that.
And Bennett? He's just Bennett. Waddya gonna do?
Some would argue (and did) that he was sick, and he is...in fact, here I am, writing this, right back where I was before I left, watching Bennett again, this time with Carter here as well. But Bennett barely had anything to do with me when I arrived. Today he is starting to warm up, but he has no choice, I'm his only option really.
I have a lot more to say about some additional epiphanies I had this weekend about Life and all that shit from while I was out at my Mom's and things I discovered when I came back, some more interesting than others, but I gotta save it for another time, since Bennett is requiring a bit more focus today than usual.
But when I can, I'll get back into a more regular rhythm. Don't mistake my tone though...I am glad to be back. As I was trying to explain to Jennifer, I'm just trying to figure out the transition from the tranquility of where I was in my head to the chaos of where it is now.
Once I finish laying the bricks on the bridge, I'll be fine.
Thursday, June 23, 2011
Remember how I said the next time you'd be hearing from me I would be in Ohio?
Well, that's not entirely accurate.
On Wednesday night, I started giving it some thought. I had planned to go back on Thursday, and the primary reasons were so that I could be there on Friday when Jen came back from Cleveland. She's up there as I write this, for Bennett's 2-year follow ups at Cleveland Clinic, but let me come back to that in a moment.
Mainly I wanted to do this for the sake of Carter, who seemed genuinely upset that I was not with him on the Virginia Beach trip and then, a day after they got back to Columbus, I left to go away for a while. Really bugged him. So I figured it would be super cool to beat them back to Casa de Lilly so that upon their return I would be there.
Upon further review I realized that they would be getting home VERY late on Friday night, and I then realized that, by that time, Carter would either be totally zonked or super cranky, and it would probably not be the 'cue the music' style reunion I was imagining for us. (Returning on Friday was not an option though, because of severe traffic that my folks have experienced on this route that they have warned me about, so it's either Thursday or Saturday, NOT Friday.)
So I called Jen, asked her is she would be cool with me changing my return day to Saturday. I'd leave earlier than usual so I could get home by sunset, and she was totally fine with it...as I pretty much figured she would be. Now with Crystal back in the picture helping out until the beginning of September, she'll have some help on Saturday so that won't be an issue, and so I went back in (I was outside getting a better cell phone signal) and told my Mom I was going to stay an extra couple of days.
She was thrilled about it, although admittedly stunned...it just isn't something that is normally in my character. I am NOT a spur of the moment kind of guy. I just kind of thought it through and it kind of just came over me in the Makes Perfect Sense to Stay Until Saturday Department so I just did it.
Having a wife that was super agreeable to it just made it that much easier.
I miss my boys and my wife, don't get me wrong, and I have tons of work piling up and oh man, that lawn...there is grass that has probably grown up to my gonads by now, cause I could not cut it before I left due to rain.
But you know what? It'll all still be there on Saturday afternoon.
On the Bennett front, one little bit of news before I go back to Chill Central. Jen called me this morning to let me know that Bennett's MRI remains clear as we now near the 2-year anniversary since the removal of his brain tumor. That's great news. Every new MRI that he has that gets a negative (which actually translates to POSITIVE) report is something to absolutely be thankful for.
But best of all, this is the very first time in ages that, upon waking from his knock-out gas, that he hasn't bitch-slapped the shit out of her or taken a bite out of her that left a mark on her for a month.
She said that this is the 'best he has ever been'...her exact words, upon waking up from an MRI, and we don't know if that is because of the Risperidol, or the fact that he is growing beyond that, or what. And the truth is at the end of the day the reasons why are less relevant to us than the changes themselves.
Here's to hoping that tomorrow's EEG is as equally rewarding.
Wednesday, June 22, 2011
Today is my last day at my Mom's house.
It's been great. Gonna miss it. And my folks. I can't even begin to describe how peaceful the last four days have been for me. How relaxing, and I don't easily chill. Anyone who knows me well can confirm that.
Even my mother and step-father have both made comments that essentially have related the same sentiment, that neither of them have seen me so 'at peace'. With myself, with my surroundings. They are used to seeing me wound up very, very tightly, at home, ready to pop a gasket.
I don't know why I let life get to me the way that it does. If there was some secret formula in he water out here I'd certainly bottle it up and take it home with me, but I don't think the answer is that hard to figure out. Once removed from the awesome, and I do mean awesome, responsibilities, and the overwhelming feelings of pressure that come along with everything that is going in my life right now...with Bennett, my career, my family, my home, my health, and on and on...stepping away from it into a place where none of it is a factor is...everything.
Why do you think baseball players have all those weights on a bat when they are taking their practice swings in the on-deck circle before they go up to the plate? Because without all that extra weight, suddenly their bat is lively and their swing is faster and they feel less burdened by the bat and more in control of it.
I need to come out here more often, if not just to see my mother and put less of the responsibility on her to come to MY world, I owe her that much, but also just because in the long run it may result in me being less frayed around the edges so much of the time.
I've never been the type of person who takes time away, who steps back and takes care of himself as far as 'vacation' goes. Never have been.
But as I go through this evolutionary process I seem to be navigating through, trying to make course corrections in my life, it might be wise to make sure I don't forget the lessons I learned from this experience, and STEP THE FUCK BACK every so often.
I'll probably be successful at a lot of the other things I'm currently trying to do in the meantime.
Next time you hear from me, I'll be back in Ohio.
Tuesday, June 21, 2011
I know a lot of people who read this blog have kids. And some of you have kids who have disabilities, some of you have kids that don't have any. But I think all parents share some fears about their children and their safety, and we all have different ways we go about handling that concern.
One thing we do is sign up for a notification system that lets us know when a registered sex offender moves within a certain distance to our home. This is a very controversial topic in some circles, and I am not saying it should or shouldn't be.
I'm not here to tell anybody what to think.
I am only here to tell you what I think. Or at least...to TRY to muddle through my murky head and try to make heads or tails of what is rattling around inside whatever you want to call my poor substitute for an actual working melon.
I can't even remember when we actually signed up for this service, to be honest, all I know is that we had never received any notifications at all.
Until a week ago.
When this notification was received, I went through a very strange series of emotional responses. Since I had never experienced anything quite like it, I figured I might as well share it. Maybe some of you have gone through the experience before and can say 'Hey man...that's a fairly normal response.' or 'Dude, your cheese done slid off your cracker!'
I look at the guy's picture. I think to myself 'Yup, that guy looks like a child molester.' Now...what gives me the right to even THINK that? And DOES he? Or am I making a judgment based solely on association? Is that fair in the slightest bit whatsoever? Does 'fair' even factor in to an equation like this? Couldn't it also be argued he looks like the long lost cousin of the dude who does voice-work for the 'Beef: It's What's For Dinner?' commercials?
I went right down and wanted to know what the crime was that he committed and THE SEX of the child he committed it against. When I found out it was a female, I FELT A SENSE OF RELIEF. I then, quite suddenly, was both ashamed of myself and felt very, VERY guilty that I felt that relief. I hoped that whoever that poor girl was, were to I ever encounter her in another world, would be able to forgive me.
I have two boys. And obviously I want to protect them. But should I not also want to protect any of the other children in the neighborhood with, if not equal voracity, at least enough to not feel RELIEF when the discovery is made of this maniac's sexual preference?
I have such a long, long way to go.
Looked at his address, Googled it, and then looked closely on the map to see where in Galena, if anywhere, our lives might intersect. There is a park in Galena, I wanted to know how close he lived to it. The truth is, he is around 7 miles away, so it isn't THAT likely that I am gonna see him in that particular park. While I was doing that, I wondered if I should print this piece of paper out and put it in the mailboxes of the rest of the homes in our small isolated development for those people who might NOT be subscribed to this service? Which leads to...
Does this creature have any rights at all? Should he? He was convicted of a crime and punished for it, and it was a crime that, to me personally, is not punished harshly enough. Why is he out? But...he did serve his sentence, and if he is indeed now out...do we as a society by making him a pariah help to perpetuate any kind of psychological cycle? To this I have no answer, and it goes back to the entire debate mentioned above.
Certainly it is good to know about the existence of such a person, but how far do you take it? There are some people who think they should be branded, I'm not kidding. Some people think you should lock them away and they should never see the light of day again. Others think sexual predators can actually be rehabilitated.
I don't know what I believe. Frankly I have never had to give it a lot of thought. It has never really been a part of my world, while many other bad things have been.
But it is a part of my world now.
It is such a shame that this beautiful world has to be soiled by the deeds of men both dark and dull.
Monday, June 20, 2011
As of now, both the Ohio House of Representatives and the Ohio Senate have passed legislation, in the form of HB 153, that will have some significant effects not only on my son's future, but of thousands of disabled individuals in my state.
As of last Wednesday, it had not fully been signed into law, and in a last ditch effort, many of the people who had been trying to advocate on behalf of the individuals who would be most affected by this legislation were making last-minute phone calls, sending letters and doing whatever else they could to try and influence some changes to the bill before it becomes etched in stone.
I wanted to share the letter I sent to my Representative and my Senator, as well as those specifically on this bill's committee. I did not write all of this letter by myself, I should point out, I had some MAJOR help in the form of a basic template to work from that was given to me by one of the main people leading this advocacy campaign.
I...personalized it a little. Even added a visual, which is just below above the greeting in the letter. This is the version of the letter as I sent it to Senator Jordan (R).
Kenneth and Jennifer Lilly advocating on behalf of Bennett Lilly, a Medicaid-eligible minor.
Concern: Because of HB 153, will our child have access to the same Behavioral Health services he receives today?
June 15, 2011
Dear Senator Jordan and Committee Members:
My son, Bennett, has an Autism Spectrum Disorder, Epilepsy and at age 19 months had a brain tumor removed from his left temporal lobe. Quite a lot for a boy who is only now 3 1/2 years old, wouldn’t you agree? Currently, he receives CPST that provide treatment for his intensive behavioral needs. Community Psychiatric Services and Treatment (CPST) is offered by the Ohio Department of Mental Health (ODMH).
I have been informed by Bennett’s CPST provider that they do not know if he will have access to CPST services after July 1st. Bennett’s CPST service was prescribed by his state licensed psychologist who diagnosed him for treatment. My family is very frustrated that at this point we do not know if Bennett’s treatment will continue after July 1st. We have not been informed by the Ohio Department of Job and Family Services that Bennett’s Level One Medicaid Waiver benefits for mental health services will change in the new fiscal year.
We are turning to you for answers.
ODMH has been very clear that the proposed caps to CPST services are due to utilization and cost containment of Medicaid expenditures due to the state budget woes. We are very thankful for the help from the Senate Finance Committee but still have two major concerns that have been, as yet, unanswered. Bennett is diagnosed with an Autism Spectrum Disorder (ASD) and today meets medical necessity for CPST by having a mental health assessment that includes treatment recommendations by a state licensed professional recommending intensive behavioral intervention services.
Our two major concerns are:
• As of July 1, 2011, will individuals diagnosed with an ASD have access to the 104 hours of CPST beginning July 1, 2011?
• As of July 1, 2011, will individuals diagnosed with an ASD who currently meet medical necessity for more than 104 hours be approved, following the new preauthorization process by the new state licensed vendor, continue to meet medical necessity for more than 104 hours?
I only have about 10 working days to determine if Bennett will continue to receive the same treatment he has been receiving for his behavioral needs.
Can you please ask questions and help us learn the answers?
Bennett’s treatment is critical for his long-term development and for keeping our family intact. Please understand, he is at a critical point in his young life and his developmental progress is 100% linked to the intensive behavioral therapy hours he receives the younger his brain is when he receives it. Depriving him of the intensity of his behavioral health treatment now, research suggests, could cost Ohioans more in the long term than it saves in the short term by inevitably shifting costs down the road to more expensive state services like residential facilities or, God forbid, the juvenile justice system. Not just for my son, but for many children like him with severe disabilities.
If you lift the proposed caps on CPST services it would mean that the 4% of individuals right now, in this proposed budget, which will not have access to treatment, WILL have access to the treatment that their licensed professional indicates they need to thrive and have a chance to become a productive Ohioan. By doing this, you can offer these children something no one else can. Hope for a better, brighter future. And having lived in the world of ‘Disability’ for almost two and a half years now, it is not an understatement to say that these services, at the very least, give these kids a CHANCE at something closer to a ‘typical’ life. I’ve witnessed firsthand the incredible progress these therapies have helped achieve in my own son.
The power is in YOUR hands to radically alter the course so MANY children’s lives. Forever. Please make a difference.
You are more than welcome to come and meet Bennett at his treatment center or at my home at any time. He is a wonderful, bright, energetic boy with a lot of enthusiasm, but he needs your help, and the help of all Ohioans, to overcome the enormous obstacles that stand in his way.
I look forward to hearing from you. Thank you for much for help in this matter.
XXX XXXXXXX Street
XXXXXXX, OH 43XXX
I sent this out last Wednesday late morning/early afternoon. I immediately received responses in the form of the standard 'I receive many e-mails (blah, blah, blah) and will be sure to (blah, blah, blah) and will consider your (blah, blah, blah).' But beyond that, as of today, Monday, June 20th, nothing of a human nature has been sent back to me.
No return e-mail, no phone call. An certainly no one taking me up on the invitation to meet with me face to face.
Not that I EXPECTED it, mind you, because I don't. That wasn't really what this was about. I was not expecting to suddenly hear my phone ring and pick it up and hear a Representative or a Senator on the phone wanting to talk to me about why they are or are not supporting this legislation. Besides, you know how I generally feel about how our representative government works, and if you aren't TOTALLY clear on how I feel, you will be in the coming days as I link you to an article that really blows my mind about how I feel about Corporate America and the ever-widening gap between the wealthy/those with political power/corporations and...well...all of us.
So why did I do it? Especially if I consider it, deep down inside, a possible waste of time? Because NOT doing it means I did nothing.
Does that make any sense at all? Probably not.
I guess the only way to try to explain it any better is to say that if someone is swinging a sword at me, even though I know I don't have the power to block the attack but I have a sword in my hand, then I have to, at the very least, TRY to bring my sword up to attempt to block that killing stroke, even if my chances of doing so are infinitesimal at best.
Because my chances are ZERO if I do nothing at all.
Can't stand the way the giant corporations that really helped to build this country are in the process of tearing it to pieces, and I am not sure they are even aware of it. And the irony of how much this all bothers me, and how frightened I am for the future of our economy, the future of my two sons and the political power that corporations hold as I also happen to find myself a few short miles from the very birthplace of Wal-Mart while I visit my Mom is very, very weird indeed.
We swung by it today while running some errands because I wanted to see what Hell looks like up close. I wished I had my camera on me, I had to grab that shot above from the net.
Hide the kids. It's not a pretty sight.
Sunday, June 19, 2011
How come there is no Mathers Day? You have a Mothers Day. You have a Fathers Day. You even have a Grandparents Day...but nothing for the Mathers of the world.
And I don't mean Jerry Mathers, best known for playing Theodore 'Beaver' Cleaver on the hit television sit-com Leave it to Beaver from 1957-1963. I'm talking about a sort of hybrid between a Mother and a Father, that person that has to assume both roles. That parent, whether it is the male or the female, that has to be Mother AND Father to their kid, either because of the fact that the other parent is gone, or is simply a douche.
Where's THEIR friggin' day?
I mean, ultimately, these people are as deserving as the rest of the parents out there, and certainly that was what my Mom actually had to be, and the best way to describe that, other than a Fommy, is a Mather, wouldn't you agree? Or I could call it SingleDad's Day...but then I'd need to find a blogger named SingleMom.
Besides...Fommy just sounds like someone with a speech impediment trying to tell you something about The Who. So I'll stick with Mathers Day. Obviously that day can't be today, since today is Father's Day and all, but it is something we all need to figure out and get Hallmark involved in.
I just realized I started this whole blog talking about Beaver at my Mom's house. That's kinda weird.
So here I sit, in Arkansas, at my Mom's house. She lives here with Ken, her high school sweetheart, whom she met up with and married after the Number Two guy I mentioned a couple of blogs back. They say the third times the charm. In this case they weren't bullshitting. Couldn't ask for a better human being to be with my mother. Well, except maybe Ghandi, but I think he's dead.
They ALSO say you can't go home again...and...well...in this case, via various loopholes, BULLSEYE AGAIN. Cause I kinda didn't.
Arkansas and I don't have a lot of history between us. I was born in St. Louis, Missouri, actually, and bounced around quite a bit. From there to Kansas City, Texas, Maryland, Georgia and Ohio, but I never resided in Arkansas. And my Mom never thought she would again either, though this state is the wellspring that spat forth her side of the family. Both her parents and their parents before them were born here.
But this house? Never seen it before. I've seen some of the stuff in it, just in a different location, so it's a little weird. Nice place though. Very clean and neat and tidy. Definitely no small kids to chase around, that's for sure.
Last time I was in Arkansas I WAS one of those small kids to be chased around. I came out here to visit with one of my Great Aunts and Uncles, there is photographic proof that I have been here before, even if I don't have a lot of memory of it.
Check it out if you don't believe, circa 1971.
There will be none of those shenanigans this time around, I can assure you of that, but so far it's been great to relax and chill with My Mom and Ken, although admittedly I do miss Jen and the kids a lot. And I've only been here less than 24 hours.
Did I mention that I got here in under 12 hours? That's over 700 miles folks and I made three gas/pee-pee stops. You do the math.
Friday, June 17, 2011
Much to my surprise, the UPS guy knocked on the door yesterday afternoon.
Not that the act itself was a surprise, I get stuff delivered to the house all the time, either by UPS, FedEx or the USPS. Mostly the USPS. In fact, Melissa (that's the main USPS gal that works our route) is one of the greatest EVER. Her back-up? Let's just say I freak out almost as bad as Nicholson does in As Good as it Gets when he can't sit at Helen Hunt's table.
No...what was so surprising was WHAT the UPS guy handed to me. A box of cookies, sent as a Father's Day gift from one of you. A reader of this blog, as the gift card was address to Blogzilly.
Very sweet, and I don't mean the cookies. I'll be sending a Thank You, but it will have to be a digital one, as there was no return address. But since we're friends on Facebook I'll hit you up there. And since I am not certain if you wanted it public or not, I am not actually revealing who you are out loud, that way you aren't suddenly obligated to send out a million cookies, but I had to do a write-up, you knew THAT was coming.
That's just how I roll.
I mean cookie.
Thursday, June 16, 2011
This is it.
Sometime late this afternoon, maybe before Bennett gets home from school, maybe after, Jennifer and Carter will be home from their vacation, and my time watching Bennett solo will be at an end. I'll then have tomorrow to pack my own bags, get some stuff ready, because on Saturday I leave for Arkansas to see my Mom.
Originally, that trip was going to take place during this vacation trip, but then after I volunteered to stay and watch Bennett alone, something Jen originally never thought I would do (and, admittedly, I never thought I would either), we shifted around the dates and if you've been following the blog for the past week you know that I have learned a great deal from this experience.
I don't regret it in the least.
It was such a good thing for me to have done, and I don't mean that in the sense of patting myself on the back as in 'I done good!', I mean it more when it comes to how much I really did learn about myself, about my perceptions...about so many things.
On Tuesday night, Bennett actually spent the night at his grandparents house, since he usually does once a week anyway. The funny thing is that I had planned to try to get a bunch of stuff done that night since I would have the house to myself, but when I actually HAD the time, and WAS alone, it felt....VERY strange.
I felt that something was missing, I could not put my finger on it at all. I missed Bennett, sure, but I missed Carter and Jennifer too...but this was different, and I didn't know why.
Of course, SingleDad then wrote a post pondering how he might feel the day his daughter Pearlsky becomes 22 and is no longer able to go to the school she attends and he has to make a decision about whether to have her reside with him full-time or perhaps have her go to a residential facility, and he has often blogged about the question of what DEFINES us (or not) as parents when it comes to raising children with disabilities.
While it didn't necessarily answer anything specific to me (and why would it, we ALL have different lives) it resonated with me at just the right frequency. It also, like a good home cooked meal, really stuck to my ribs, and I thought about it long after I read it.
Last night, I knew was my last night with Bennett by myself, so I spent the evening playing with him, wrestling, tickling, doing the things he CAN do, not really worrying much about the things he can't, as is my tendency.
We rolled a ball back and forth, made fart noises into the sofa, junk like that. I essentially just intended to keep him up with me and I would go to bed when he went to bed, and that's exactly how it went down.
As I drove him to school his morning, I reflected back on the week.
There really had been no problems whatsoever. There were no meltdowns. No fits. No self-injurious episodes. He did not have any experiences of beating his head into the wall like he used to when Jen left. The first two days, I would bet cash money he was depressed. he took naps EARLY on Saturday and Sunday and seemed a little sad, and he occasionally said 'Mommy' a few times, but he never lost it.
He required, as he always does, constant watching and lots of work. He needs help with everything from eating to dressing and obviously he still wears a diaper and such. You can't let him roam around unsupervised as he can and does get into stuff that can lead to him getting hurt. And it was difficult because of this to get other stuff, like cleaning or anything that required focus away from him, done.
But nothing happened that I had originally feared might happen. And I quickly lost all stress and anxiety over the responsibility level I had with him, too. In fact, the entire week, with the exception of him bumping his head and the lamp thing, all I can remember is feeling very happy when I was around him.
In the lobby at school, his BT came out to pick him up, I said 'Give Daddy a kiss.' Without hesitation, he turned and gave me one.
I said 'Bye-bye!' as he was walking away and he turned around waving and said 'Buh-buh!' back, without hesitation.
The BT and the woman who works the desk both looked at each other, mouths agape. Why? Because you usually have to prompt him more. You usually have to direct him by saying something more 'directive-like' to Bennett to get him to respond, and it might take 1, 2 or maybe 3 times to get him to do something and I was so casual about it and he didn't even blink he just reacted.
I'm guessing the week was good for him too, as far as his relationship with me was concerned, and how in the world can I not be extremely happy about that? And as I was driving home I realized why SingleDad's post had resonated so much with me, and why I felt the way I did on Tuesday night, when I was in the house, alone.
See, there was a time in my life when I loved...LOVED...having the house to myself. I would do anything to have it. Me, on the weekend, home...alone, just the X-box 360, my underwear and a T-Shirt, some day-old pizza, some Diet Coke (now two whole weeks without, thank you very much) and I was a happy camper.
But I don't crave it as much as I used to, and I think now I know why.
I am a Father.
And until this week, I don't think I have EVER accepted that, because the title has carried with it so much difficult baggage.
I have always, ALWAYS detested Father's Day because of my two Father's.
First, there was the biological one, the one that spawned me who, after the divorce (when I was round five), totally stopped taking any interest in my life whatsoever by the time I was ten. From 1977 onward, I never spoke to or saw the man again. I found out he died via the Internet, and my sister and I were not even mentioned in his obituary.
Then there was Father number two. Number two is an appropriate place to rank him, since that is pretty much akin to how he treated me, like a piece of shit. This was the Step-Father who was abusive, both mentally and physically, and who had perfected it to such an art form that he had me scared shitless to a point where I kept it hidden from my Mother for most of my life. It is he who gave me the gift of PTSD and various other anxiety and depressive disorders I struggle with as an adult. It was he who finally succumbed to the pressures of his own mental illnesses and decided his last meal would be a bullet some time in the late nineties. I don't remember the exact year. I had severed all ties long before that.
Naturally, I resisted the very notion of Fatherhood. So much so that Jennifer had to essentially trick me into it. Not sure she would be comfortable with that particular reveal, but even if she actually READS this blog, which she hardly ever does, or if someone tells her I wrote this, by now it's fairly common knowledge even in her familial circles, so it shouldn't really matter. Besides, I actually believe this is not the first time I have mentioned it.
We were on shaky ground at that point in our young marraige...she wanted kids, I was resisting. She stopped taking the pill and didn't tell me. The result? Carter Maximus Lilly. Another result was me discovering the true depth of my PTSD, cause that is when my true panic attacks actually started in the weeks/months leading up to the birth.
But...it HAD to be that way, looking back.
Actually, there was a time I was angry about it. How could I possibly be today? How could I possibly not see what she did as one of the greatest acts of faith one person can show to another? I don't see it as 'SHE FUCKIN' LIED TO ME!!!'. I see it as 'She saw a strength in me that I could never see in myself, a strength that two selfish men stripped away.'
And my perception today is...I am a Father to these two boys. I'm happy to be that. I often wonder what our third child would have been like had we not lost him/her. I asked Jen a few weeks ago if she ever thought about it. I had no idea she thought about it as much as I did. Which is a lot. Would having a third make things harder? Yeah...hell yeah. But I do still think about what might have been.
Maybe that's partially why 'Father' isn't just a word to me anymore, it is something far, far greater. And I think I understand it now, on a level I never did before, all because of this week. SingleDad's post wasn't just about what happens when Pearlsky becomes 22 and what should his decision be...SingleDad's post was all about being a FATHER.
But it doesn't have to end, for him, when she turns 22 even if she does not reside with him, or for me if for one evening Bennett or Carter is not with me, or down the road when Carter leaves the house to pursue his life or Bennett goes to an assisted living center or whatever happens for him.
The key is trying to find the right balance. The balance of being a Father and being all the other things I need to be too. On Tuesday night, I simply wasn't sure who to be...so I kind of stalled...I just had to figure some things out. I didn't stop being Bennett's Father or Carter's Father since they aren't here...I'm still defined by that role, as much as I am defined as Jennifer's Husband, or My Mother's Son, or Richard's Friend, and on, and on, and on...
I guess what I am trying to say here, and very badly I might add (I feel like I am fumbling around with a bra strap for the very first time), is that I already knew that we are the sum of all of our parts, but for a very, very long time I have found it hard to be comfortable with the Mantle of Dadhood, and I was not sure if I would ever truly be able to accept the word Father as part of my own definition of self.
I think, now, that I am.
Wednesday, June 15, 2011
You want to talk about Father's who do great things for their kids? Look no further than Mike, and his blog Marissa's Bunny, and there you will find it. Or him. Not sure I'd go so far as to call Mike an 'it'. Doesn't feel right...not unless it happened during a HALO Match or something.
As you may or may not know, I won an iPad in a contest that he was running that the foundation he created with the help of his employers (for Marissa and other kids in need) was sponsoring.
Do you feel lucky?
Well, do ya...punk?
Because there is a NEW contest underway, and now you can take your best 'shot' at winning an iPad as well. Go to the main contest page for all the details, and have at it.
The raffle aspect of it is a necessity. The winners of the last round could and would tell you, that there was a lot of, shall we say, legal stuff, that the Foundation had to go through with Apple regarding that last contest and any future contests. A LOT of legal stuff.
What goes along with legal stuff? Yeah...lawyers. And they cost something we like to call...money.
Anyway, today is the last day for entering. Mike had asked me to mention this earlier this week, and that sound you hear is the sound of a ball dropping. So run, don't walk, and enter now, cause this is it...
Tuesday, June 14, 2011
In yesterday's episode of Blogzilly, there was a comment left by an Anonymous person in response to my post that said the following:
'I thought you had a home health care aide, so its not solely on your shoulders. I can't get one myself.'
For some reason, this comment really got under my skin. So much so that my response was rather explosive. I've since had some time to cool off a little, and I wanted to go back to it and figure out why I got so heated and also clarify the Home Health Aide situation overall.
After all, this blog should probably be called Dr. Blogzilly, cause this is where I work out all my shit.
First let's deal with why I got so angry. There are a couple of possibilities here, of which all, some or none could be the heart of the matter...I'm just trying to figure it out myself.
There is timing to consider. It was the first thing I looked at in the morning. No coffee had kicked in, and I'm in a terrible mood in the morning under normal circumstances, and circumstances right now are far from normal. Jen and Carter are both gone and I am here, in the house alone, watching Bennett. So everything is 'off' for me. All my patterns, my habits, my biorhythms...everything.
Then there is this House Bill 153 for the 2012-2013 Ohio State Budget that I went on and on about yesterday that has me in a foul, rotten mood. No need to go over that again. I'm pissed off about it, plain and simple.
This all explains my mental state, but not my reaction to the statement.
I believe I reacted to the statement because I felt it suggested that because I had access to a Home Health Care Aide, that I didn't have to worry as much about the things I was expressing in that particular post. That since I had this 'extra help', the implication was that I should, I don't know how to put this exactly, perhaps be less angry about his services being cut because at least I still had help so I didn't have to shoulder as much burden as other people in the same situation might have to who did not have access to a Home Health Care aide would?
Like I said...I'm trying to figure it out myself. Because later on, when I went back to re-read the comment and the post itself, I am not exactly even sure what the commenter was commenting on. Because there are, as my usual tangenty nature just creates, multiple subjects.
So I guess that's why I was pissed, it's as good a theory as I can come up with. I resented the inference, if that's what it was. Not sure that's what it was NOW, with a clear, coffee-filled head and some time away from the initial reading, but what's done is done.
I probably over-reacted to it, but that doesn't mean I do not still think it is a very poorly-conceived comment and one that I guarantee you would NOT have been made by someone using an actual NAME. Anonymity provides people with Internet Kevlar, giving some people a certain sense of freedom to say things they might not normally say to your face or if you know who it is who is doing the talking.
And so...I've simply changed my settings to wipe away the ability for anyone to leave a comment that is not a Registered User. Problem solved. I just hate that shit.
Nut up or shut up.
I'm always one for open discussion, but if you have to hide behind anonymity in order to actually say something to somebody? Not only do I not really want you to comment? I don't want you READING here.
Go away. You don't belong. Period.
I don't have the physical ability to stop you...but our philosophies are so totally opposed as human beings and this blog is SO not your cup of tea, because the truth is I have nothing to offer you...NOTHING. Nothing of value, anyway. In the end, you will only end up feeling like you've wasted you're time. That's cause you ARE wasting it. You are reading the wrong blog.
That being said...let me clarify the Home Health Care Aide thing for the record. And I just want to use the term Home Health Aide, even though it might be incorrect, just cause it's easier to write, easier to say, and it's my fuckin' blog.
I can't even remember when Bennett had his first Home Health Aide, I'd have to go back and dig through the records, but her name was Crystal and she was around for a while. I'm not sure if it was an entire year, but she started at some point in 2009 and I can recall winter months and summer months so I know there was a long stretch of time. She was originally from the Republic of Ghana in West Africa, moved to America at some point with her family and she left this job here to go to Nursing School, too far away to actually remain here working with Bennett so we had to start looking for a new HHA.
I liked Crystal, for the record. She was punctual, she rarely EVER called in sick, she was open to lots of stuff, she was a lot less robotic that what I would eventually learn was 'the norm', and she was very polite. Best of all, she loved...LOVED, my kids and it broke her heart when she had to leave. Did she phone it in a little at the end? Of course, that's human nature. WHO WOULDN'T? I don't really blame her for it at all. She still keeps in touch.
After that, the agency that handled Crystal kept trying to find someone to fill our need. Not an easy task. Here's why. No one really wants the job.
WHAT!?! Why wouldn't someone want to be a Home Health Aide to my sweet little boy?
Because we only really need someone from around 5-10 PM on weeknights or on the weekends. Who the HELL wants hours like that when you are a Home Health Aide? You want to work FULL 8-12 HOUR SHIFTS, and preferably with older people who require a lot less actual work, who tend to maybe like to sit there and watch TV and don't require the...let's say 'effort', that a 3 1/2 year takes.
I totally get it. I understand it.
I don't LIKE it. But I get it.
So finding someone for this particular need hasn't been easy. They send someone over after a while. Much older woman. I believe I told that story in some blog entry. but it was before I started labeling the Home Health Aide blogs, but essentially this woman had no cell phone and was driving a car that had 2 donuts on it and looked like it was going to die any day now. She lived 40 minutes away, showed up 3 hours late the first night because she could not find the house and she simply was not the right fit.
When I asked the agency to call her the next day and ask her not to come back? Guess what? No HOME phone either. The agency asked me to have her call THEM when she got there and they'd tell her to leave. I said 'Um...no. I'm doing that to someone in my home.' So I had to essentially fire her MYSELF as she cried in my kitchen.
Few months later. They find someone else. Younger girl. Probably mid-20's. This one I wrote about as well, and can easily find it cause this is when I started tagging the Home Health Aide entries. Of course, I didn't write all that much about her, since she lasted less than a week.
Since that time, the agency has found NO ONE. Once a week, Jennifer's Mom helps with Bennett in the evening, and we said she should go to the agency, since she is retired, and go through the certification process and get paid to do this. Might as well, since the budget is there and I was told by someone in the government that if I don't USE that money I stand the risk of LOSING the money. Isn't that the most fucked up thing you have ever heard? That reminds me of another very fucked up budgetary thing, but I'll save it for another time. (Though you know me, I'll forget.)
So Bennett's Grandmother, currently, is Bennett's only HHA, once a week. Apparently, since the HHA thing is so VERY fucked up everywhere, I understand this is a very, VERY common occurrence.
A person from Bennett's school approached us about the possibility of working some hours with Bennett at home and taking some of the Home Health Aide responsibility. I was SUPER jazzed about this one. Probably more than anything else in a LONG time. This was like getting GOLD in my Christmas Stocking...a person who utilized ABA, and WORKS with Bennett ALREADY??? Are you kidding?
I thought I'd died and gone to Heaven.
Nope. I'd actually gone to the other place.
This one shit the bed too.
And it was, by far, the biggest let-down of all of them. Because I had the highest expectations. I wanted to LEARN from her. I wanted to use it as an opportunity to gain some insight into how things work in that type of therapy technique. I barely even scratched the surface because the few times she was here I only got to observe maybe twice, the other couple I was too busy and then, like Keyser Söze...WHOOSH...she was gone.
And here is the real rub of it. Twofold. Get ready.
First, Jen goes into Bennett's school the following Monday after that whole Spring Break debacle and the woman just nonchalantly says 'Sorry I couldn't finish out the week, I just got really sick.' I almost hit the ceiling.
But then, THEN she asked when Jen wanted her to come back out. I heard this, I went through the ceiling, up into the atmosphere, exploded into tiny microscopic particles and had to be re-assembled by somebody named Oscar Goldman.
At first I said NOFUCKINWAY, but Jen reminded me that we had nobody else. I said that doesn't mean that we have to accept something inferior. But she was exhausted, I was exhausted, and I could tell she really just needed to believe. I just hated to know that all this was doing was postponing the inevitable and I knew it, I knew it as strongly as I knew ANYTHING.
Jen was simply too tired maybe to see it, I don't know, but Christ I hated having to say 'OK' knowing that eventually my wife was not only going to get bitch-slapped AGAIN by this person who I knew would prove to be un-reliable but that inevitably I would not be able to resist, as much as I love her, and as much as I knew I shouldn't and as much as I wanted so desperately NOT to do it, I knew I would NOT be able to keep the words 'I told you' from coming out of my mouth when the time came.
The time came.
But she gave me permission to say it. So I did. :)
And I still see this woman, even now, dropping Bennett off at school this week. I'm very pleasant to her, she's pleasant to me, and she is still great with Bennett. Personally? I think she just bit off more than she could chew, could not admit it and a piece or two of backbone was missing when it came time to actually stepping up to discussing it with us.
So that's the Home Health Aide situation, in a rather large nutshell. We still don't really have one. Now...Crystal is off of school this summer. She called a while back to check in on Bennett. Was shocked we had no aide. Asked if we wanted her to come work a little.
HELL YES WE WANTED HER TO COME WORK A LITTLE.
So the summer will be a little easier. IF she can...word has it that even THAT stuff is being cut, we just don't know by how much yet.
But for the Official Record. Any burdens that are shouldered regarding my son, are shouldered by myself and my wife...alone. We are his parents. That is are responsibility, and we take that responsibility gladly, because we love both of our sons. No one else is responsible for his overall well-being but Jennifer and I.
Do we receive help from time to time? Yes, we do. As does everyone else, with both typical and non-typical children. And everyone, and I do mean EVERYONE, receives different amounts of help, whether it be from family, friends, the government, their local church, or whatever other sources they find to tap into.
You do not begrudge someone for the help that they receive. As a member of the human community, it is your responsibility to offer MORE help, and to reach out for help when you need it. As a species, it is our responsibility to HELP EACH OTHER. Resenting someone for receiving more help than you, for having more money than you, or a bigger car than you...that's all very dangerous territory.
When I used to carry my Catholic card with absolute pride, I would say that it is the most chilling thought to me when I think how much simpler, how much easier, how much better, life on this planet would and should be, if we took a FEW lessons from Christ and tried to practice them in how we treat each other.
[Just a few. Don't get all carried away now, Richard. :)]
When you care about someone, when you take that next step and enter their life, become a part of their world, you should want them to succeed. You should feel good about positive things that happen for them. You should celebrate their victories. You should commiserate with them in their defeats.
You should not suggest that they should perceive their burden as lighter than it is because they have help and then point out that they have something you do not. It just isn't how it is done. ESPECIALLY when the truth is...we really haven't HAD that help for a really, really long time.
OK, I believe my rant is over.
Even for me...this was long.
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