Saturday, July 30, 2011

Separate But Equal


Initially, when the task was put upon us to embark on the journey that became Mission: iPossible, the community restoration project to complete the fulfillment of Apple iPad2 devices to declared 'merit-based' winners in a contest hosted on a website called Marissa's Bunny, it seemed so...simple.

In theory, it is. Or at least you hope that it will be.

The logistics of the endeavor, though, have been much more difficult than I ever imagined. Had I the same experience to do over again, would I still do it? Absolutely. I would just have approached it differently. But that's hindsight. and you know what they say about that.


One of the things I had tried to establish from the beginning was separation, from here to there. I felt it was important to severe the link from Blogzilly to Mission: iPossible. For some reason, I believed at the time this to be a necessary action.

That thinking is flawed, fundamentally.

If the Mission is about Community, and I am a part of the Community, doesn't it therefore stand to reason that severing a link between my personal blog and my connection with Mission: iPossible, is to in some way ignore my basic membership in this Community?

For example, a Representative or Senator doesn't CEASE to be a Citizen once he takes an official position to serve his community. And while that analogy doesn't fit since I am not in an elected 'position' within the SN Community, it serves a purpose in the sense that I don't cease to be a Community member just because I am a part of this group that is trying to serve a function of getting children with communication-related disabilities their iPads.


So...why DID I initially try to install a kind of barrier between the two?

A good question.

I think, perhaps, the answer is based on fear. Fear of repetition. I remember how it felt having 'sponsored' the original contest by sending people to donate, and how responsible I, and many other people, felt for that outcome.

I know people like myself, Heather, Danielle, Ellen, Joyce, Cortney and many, many others felt a deep sense of personal guilt, they all said so, publicly on their blogs, and it was very real, so much so that it caused a lot of emotional tension, anger...all the things you might expect.

I think the fulfillment will be achieved on these iPads. Hell, we've already pulled together funds for 5 of them, we've shipped 3, another ships imminently, and we are nearing the funds for a 6th. In a little over TWO WEEKS since we 'officially' launched the site.

But I think the emotional fever of this contest and its post-contest aftermath will resonate long, long after this first community restoration project has been forgotten.

I know that I have expressed sentiment to some folks I would give anything to re-phrase, but once you put things out there in the heat of the moment, and it is perceived in ways you may not have intended, you are stuck with the outcome, whether you meant for it to be so or not.

But life goes on, as it should.


I've long been an admirer of Booker T. Washington.

To me, in as much it relates to how far we have come as a community of people (and believe me, I still believe we have a million miles to go), he is a man who has had a great deal to do with laying the foundation of how we relate to each other, how we treat each other. The light of Rosa Parks, Martin Luther King, Jr., Malcolm X and Barack Obama does not shine as brightly without the illumination that is Booker T. Washington. He was a brilliant, gifted, insightful and inspiring American.

And these words from him I often read when I need to feel encouraged.

'I have learned that success is to be measured not so much by the position that one has reached in life as by the obstacles which he has had to overcome while trying to succeed.'

-Booker T. Washington
Up From Slavery (1901)
Chapter 2 - Boyhood Days

OUT.


Friday, July 29, 2011

A Friend in the Hospital


Is it plagiarism to take parts of a post from another blog and post them in your own if you wrote the other blog? I mean...technically I try to keep the two blogs separate, but I did just kind of 'lift' this from the Mission: iPossible site. But it's like taking something from your left pocket and putting it in your right, right?

And besides...I really have been an absentee poster here, with MiP taking up most of my time lately.

Got piles of content for here though, if I can just get to some posts.

ANYWAY...


I wanted to give a shout out to a friend's kiddo. The kiddo is one of the Recipients in that contest that ended up sparking the whole Mission: iPossible fund-raising drive. That's how we ended up knowing each other.

Liam, from the Olson family, is in the PICU at Hasbro Children's Hospital. You can read the update by Eric, Liam's Dad, at Pressure Support and offer your words of encouragement to his family there, too.

Eric is good people.

How do I know this for sure?

I don't.

Why do I trust this to be true anyway?

I just can.

Even despite thinking you know a person and then finding out that maybe you don't?

No, BECAUSE of that.

Waddya doing, having a conversation with yourself, ya jackass?

Oh, sorry.

My point is, that you have a choice to make, as a human being about whether or not you are going to trust your instincts again, even though your instincts were proven to_be_dead_wrong. The answer is, of course you are. What other choice do you have?

People are gonna be wrong.

I'm going to be wrong. Again and again. Shit happens. Get over yourself. Focus on the future and the things that matter the most to you. Don't get tripped up in the penny ante bullshit.

Hasbro Children's Hospital is in the Rhode Island area. Send lots of gifts! If you are local, don't stalk for God's sake, but go to their blog and offer to bring 'em some coffee or something.

Community support.

And it is HASBRO Children's Hospital...remember that. I wonder how close it is to the Holy Land?


*EDIT(6:42PM EST):
I've never been a Twitter guy. For obvious reasons. Well, I think they're obvious. I have the affliction known as Diarrhea of the Mouth. Or in this case hands I guess. Although, I suppose I could use Twitter as an educational tool (would that be tax deductible?) to learn some brevity. But on Eric's Sidebar I saw this, and wanted to share. He 'TWEETS' I guess you call it. He's also a very witty guy.

@PressureSupport-Eric Olson
'After all we've done for him, Liam is now refusing to share his morphine drip.'

Now THAT is a man who is keeping his spirits up!

OUT.


Tuesday, July 26, 2011

Mass O' Peelle


My wife Jennifer has an enormous...family.

HUGE. Gigantic.

Though I suppose anything would be considered large compared to mine. I spring forth to thee from a highly dysfunctional group, and we be scattered across these 'fitty' states, with very few of us remaining in touch with each other. Close friends know most of THAT tale, or at least enough.

Jen's family though? A very tight-knit group. They have family reunions.

ANNUALLY.

These gatherings are so vast they must be held outside of homes, at parks or rented facilities. They also gather together for holidays, birthdays, even for NO REASON AT ALL. Can you believe that?


It was shocking to me when I first met my Bridezilly-to-be, and it is difficult for me to this day to acclimate myself into the flock. I do the best that I can, when I can, but there are a lot of functions that I skip, only because I know that I just can't handle them that well psychologically. Those are always the ones that involve me having no retreat space.

That may make zero sense to most people. But there may be a select few who understand what I mean by that. But in essence, it typically means that the farther the way it is from Casa de Lilly, the less likely it is that I am going to be able to wrap my brain around it.


But I continue to try. All I can do. I am much better about the local stuff than I used to be. It takes work.

Let me revise that statement, your honor. I was getting a LOT better about it, but I stumbled a great deal after Bennett started with the tumor and the Infantile Spasms, and it is only recently that I have started to recover some of the ground that I lost two and a half years ago, that's how hard it is when you go from WHERE I WAS to WHERE I WENT in my head.

Luckily, when it comes to some of the events that take place 2 1/2 hours south of here that I don't go to, there is Grant Peelle.

I can't tell you exactly what Grant is to me, as far as how we are related. I don't remember all that stuff in my head. Again, Jen's family is HUGE. He's a cousin of some kind, I think, but I'm not sure, and it isn't that I don't care, it's just that no one has ever given me a chart.

I need charts.


But what I do know is Grant is one talented guy. Pure and simple. He's done all KINDS of things too. One of the things I was most amazed hearing him talk about was when he was telling me of his experiences as an auctioneer. Grant has this house, called Peelle Cottage, and every year he hosts a weekend for the family, and one of the years I went down there for a day (not to spend the night, I can't seem to mentally pull the trigger on that...OCD much???) and that was when he was telling me about being an auctioneer. It was riveting.

This past summer, they had a weekend at Peelle Cottage. Again. And I skipped it. Again. Can't remember why. Jen came back early with Bennett because either she or Bennett was sick, so I never did scoot down there for a day.

Saunders' Family Memorial Day Weekend at Paint Creek Cottage from The Ren Men Show on Vimeo.


But lucky for me, Grant is talented. He shot an awesome movie of the weekend. And this should give you an idea of how jammed up I have been of late. He posted this ONE MONTH AGO. I'm finally getting around to hitting this. Shameful. You can see Carter and Bennett in it throughout. I particularly love the little snippet of Carter 'Karate-Chopping' the hanging rope.

Dunno why.

While I was visiting my Mom a few weeks back, I had taken some screen grabs, and meant to post them when I got home. But then all the STUFF went down and I never got around to it. Now that I am back to bidness on this space, I've peppered in a few of them throughout the post. The rest I'll pop into the Facebook page.


Pretty cool huh? I told you...he's GOOD, So many family members have been asking for a copy of it on DVD, I told him he should start a side gig and charge us all $5.00...with as many people that are in Jen's family, that's a legitimate side business!

OUT.

Friday, July 22, 2011

Yo, STEVE!



Our o'er-priced house, just keeps a leakin',
Our wound-up kids, they keep a freakin',
My cheesed-off wife, she aint' a speakin',
I spend my life, hunched o'er the pee kin,
My tonsil stones, they are a stinkin',
But maybe Steve, one S'tember weekin',
Can come on over, his tools a klink'in,

And help us fix this F*#KING shit!!!


Stevie...Miss you buddy. I imagine you must be hip-deep in Slave Leia bikini's right about now. Or at least maybe a porterhouse the soize o' me left leg. Whatever it is, it has got to be better than here.

And besides, there's toys and comics.

Most people reading are probably going 'Huh'?

OUT.

Tuesday, July 19, 2011

Bowled Over


It always sucks when you know you let your Mom down.

Even when your Mom happens to be a warm, understanding person, you still want to kick yourself in the groin when you know you promised her you would do something, and you totally forgot about it. You gotta work up your best pair of puppy-dog-eyes and bowl her over with a Make-Good. Granted, the last couple of weeks, since I got back from her house, I have been really pre-occupied. Overtly stressed. To the max! And not just from what you've seen play out here in these digital pages.

My back disc problems are in overdrive, our issues with the house falling down around our ears remain unsolved due to the financial aspect of trying to fix them, some legal crap and timing. Got some kind of weird shooting pain in my arms that causes my outer fingers on both sides of my hands to eventually tingle and go numb (that's fun).


My throat thing is flaring up again. One of these days I am gonna drop that photo. I'm thinking in addition to the Laryngopharyngeal Reflux I have tonsil stones and that THING was just a gigantic one I gagged out. Last ENT visit (again...the DOCTOR not those big tree guys that walk around and talk really slow) he jams an elongated Q-tip down there and pops out a chunk of broccoli the size of a piece of rice and says that because I have unusually large tonsils I probably get particles trapped in there that start to...oh man...get this...ferment and cause me to have these issues in my throat.

NICE.

What's interesting about that is the fact that when I went in there it DID feel like I had something in my throat, just as it does right now. But Jen is not really very good at looking down in there and going for any dungeon dwellers. It skeeves her. I don't blame her. Now, my Mom has the personality type. She'd go digging. Even if she made me throw up.


But that's what Mom's are FOR.

The doc said I should probably schedule a tonsillectomy. GREAT. But he's probably right. They are unusually large. And I do often feel like something is in there. I do get sore throats a lot, and right now I've got a doozy. AGAIN.

Waugh, waugh, waugh.

Anyway...what did I forget to do? A friend of mine clued me in on something a while back that is the single coolest thing in the universe. And I was supposed to send my Mom the link. Here ya go Ma...


Yes, friends, it is The Obol. It's a bowl for all the crazies out there, like me, who are very obsessive about their food. I hate it when my pancakes get mushy with syrup, so I dip each bite in a ramekin of syrup I never put anything on the stack itself. I hate it even more when my cereal gets soggy.

So in the past I have taken my cereal in one bowl all by itself, and then, by the spoonful, gently angled a spoonful of the crunchy goodness to allow some milk from another bowl to glide in between the pieces, at which point I bring the freshly dipped concoction up to my eager mouth and begin the chewing process. REPEAT.


Ah, the pure joy.

But the hassle! The time! The trouble! The sideways glances from attractive waitresses at restaurants! The harassing phone calls! The threats against my family! Oh the humanity!

I say to thee NAY! NO LONGER!

Not with OBOL!

This baby is designed from the GET-GO to keep the two entities separated during the entire cereal consumption experience! Can you imagine that? It's the most brilliant invention since...since...since INVENTIONS!


But it doesn't have to just be used for cereal, it can be used for a WIDE VARIETY of other foods! Like Nachos, or Asian Cuisine, and Milk and Cookies. Obol! I FUGGIN' LOVE YOU!!! If I wasn't married I'd be taking you to Vegas right now! I mean LOOK AT YOU! Who wouldn't want to eat out of kitchen ware that looks like a bedpan?

But you know what's the most incredible thing about you, Obol? What actually makes my head hurt when I think about it?

Why...oh WHY...did someone only think of you NOW?

And why didn't I?

DAMMIT!!!

Why couldn't I have been born a cat? At least they don't really give a shit about stuff.


OUT.







Obol® is not responsible for the content or opinions expressed in Blogzilly, and such content does not represent the views of Obol® or any of their affiliates and is the sole responsibility of its author(s), who is absolutely certifiable at this point. He said that. We didn't.

Saturday, July 16, 2011

Bennett the Cookie Monster



The truth is, he is not a monster about cookies at all.

And it isn't even a cookie, it's a high-fiber granola bar. The boy is more tightly bound up than the inside of a baseball. Even a miniscule dose of Risperdal causes that I guess.

But what Bennett has been, over the last few weeks, is a delight to watch evolve and grow.

And evolve he has.

His self-injurious behavior and even most of his aggression is SO manageable right now. Not sure why. Not sure how. Not sure I give a crap.


I only know that he is the happiest and most contented he has been in two years. Why should ANYTHING else matter as to the why? Although you know I do dwell on it. I seek answers. It's what I do, even when I say I don't.

As he is rounding the corner on his two-year anniversary of the removal of his Brain Tumor, he has come a LONG way. I still haven't been able to get him to say 'Hi Daddy!', something he could do at 18 months with relative ease, even after all this time, but he can do so many OTHER things and guess what?

I've stopped pushing Bennett, and most importantly, myself. It will come when HE is ready. And I've accepted it. Finally.

I am now moving at Bennett-speed in all Bennett-related matters, and I am not bothered by this anymore. Something has taken hold inside me, something I cannot explain...yet. And as you can see, the extra Speech Therapy was REALLY paying off. Too bad the Ohio State Government took a giant DOODY all over THAT part of his treatment. We'll just have to find another way to keep that aspect of his brain stimulated.

And now, as he is nearing 4 years of age, he is finally taking a mild interest in a couple of books and the social interchange of sitting beside me and having me flip through some pages.

THIS IS MONUMENTAL.


This from a boy who has resisted ALL attempts at this act that all parents of typical children, MYSELF INCLUDED, often take for granted. I don't take it for granted anymore. Bennett walks up to me with a book and says 'Buh--?' in Benglish? I stop what I am doing and READ THE FRIGGIN' BOOK.

Except once when I was SO close to finishing Case 6 in Dead Rising 2 (yeah, yeah, an old game, but I haven't had the scratch for L.A. Noire or any other new games so I am playing old ones or ones I happen to get for free from an old friend at Capcom, thanks dude!). On this game I couldn't stop in the middle since there was no actual save point in a boss fight, so I did have to ask him to wait a few. But give a guy a break, after a long stressful day some of you drink, some of you go bowling, some of you watch American Idol...I kill zombies and think about Eddie.


Similar philosophy adopted with Carter on the book front, I need to spend more time with him on that, as he is still enjoying, at the newly acquired age of 7, some of the conceptual Art of Star Wars stuff I have been showing him at bed time.

Carter's birthday was last week, one themed after Pirates of the Caribbean. A POTC party helps when your Old Man has some creepy toys to throw into the mix as party decor. He loved 'em. I have more pics, and some I need to snag from family, and I will show them next week.


I have no regrets at all about not showing them last week in 'real time' and using this blog as a springboard to other things.

NONE.

One day, I hope both of those boys can look back at that week and be proud of their Dad, even though for a while I was fairly unavailable to them and their Mom, and will continue to be pressed for time a wee bit longer.

During one of the more stressful days last week, Carter comes in (he is still home all day from school for summer break) and says something that only a kid can say. Poor kid is SO bored out of his mind. I had such a different plan for his summer vacation, but the economy is such crap I have had to work a lot more than I ever imagined to scrape by without a full-time, steady gig and all the plans that were laid have only been marginally realized.


But leave it to him to always give me a laugh just at the time when I need it the most, when I am right on the ragged edge of the abyss ready to jump off, screaming all the way down.

'Daddy, it costs three million dollars to get into Heaven. For other people it's Free.'

I think I'll start saving now.

OUT.

Thursday, July 14, 2011

I'm Taking My Blog Back


For the past couple of week's I have had an enormous amount of eye-opening experiences. It's been unreal. Surreal.

My Mom has always wanted me to write a book. There are two I really, really, really want to write. One is the life story of SingleDad, who is, seriously, an unbelievable guy who has a life I simply must write a book about. He's been one of many digital beacons of light for me the last couple of weeks, when all of the other lights have gone out.

The other book is the story of all of...OMG, I don't even know what to CALL this experience, so I won't call it anything. I'll just call it THIS. THIS has been transformative for me in so many ways I can't even begin to describe. And believe it or not, I am not even going to try right now, as is my usual nature.


I want my blog back. So I'm taking it back. As of today. I laid out a rough framework for what will be the main site for the Mission: iPossible home. It's rough, expect many a visual change along the way, and it is a very satirized 'homagey' logo to the original TV show that a lot of people will be too young to even pick up on, but it's ready to start receiving some data. That's where any discussions of THIS will happen after this blog post is written and posted.

It is there you will hear more about Heather and her involvement in really getting the whole ball rolling on THIS. You know that scene in the opening of Raiders of the Lost Ark when Indiana Jones is running away from the boulder in the Hovitos temple? Imagine Heather wedged back there somewhere...kicking the rock.


How ironic is it that I stumbled on THAT reference, since the Hovitos were keeping their fertility idol in that temple, and Heather is a mother of six? She is also kind of the DeFacto Den Mother of our little group.

You'll also hear more about Darcy and Maureen, two delightful people that, together, in case you had not pieced together all the clues and hints (or outright admissions) by now, were the identity of the crusader known as SNAvenger. People have questioned the methods of this identity. And you know what? It's OK that you did.

No one questioned the methods of this identity more than those two women, both Mothers, both concerned citizens. Two of the most loving, compassionate people you'd ever hope to meet and with an edgy sense of humor that puts mine to shame. Talk about simpatico.

But they saw a situation spiraling out of control, and while I am reticent to speak FOR them, having spoken to both of them I will say that neither of them were ever comfortable. WHO WOULD BE? THIS was a crappy situation for everybody, but sometimes drastic measures are needed.


SNAvenger is gone now. Dead. Services no longer required. And remember...'You either die a hero or you live long enough to see yourself become the villain.'

These women are heroes, and despite what you might think or have thought about their initial approach, which Maureen spoke about quite a bit in some of the exchanges she had on the blog Love That Max!, it is my opinion that they deserve more respect than reproach. In the comments section of Ellen's post regarding THIS that turned out to be maybe the longest, wildest and craziest read in the history of the Blogoverse, they took some hits and got some bruises, and they may take some even now and I have to tell you that from this point forward none of us will get involved in a debate over the right or wrong of it.

If a person chooses to feel a certain way about it, who is anybody else to try to force them to feel otherwise? Opinion is your right, option is your right, and we are not here to debate you on it. All of us, during the course of THIS, have followed our hearts.

Nothing more.

All of us have had the best intentions. None of us are perfect, or have claimed to be. We are human beings after all. And besides...has it not been debated enough?

For example...I peeked at Love That Max’s blog yesterday and had another eye-opening experience, one I really needed to have. Finally, in all of this, someone questioned ME. Whether a ‘Ken Lilly’ was an alias of the original contest host.

I’m trying to put into words what it felt like, for the record, because I have also been guilty through all of THIS in making accusations and being suspicious. I wasn’t angry. I was a little surprised, and a little hurt, but I understood it.

My stomach felt weird.


You know how you feel right before you took a test in high school or college that you weren’t ready for? To this day seeing a #2 pencil makes me WANNA Number Two. Felt like that in my gut. And I wasn’t really damaged by it either. This woman doesn’t really know me, our paths have had no reason to cross, even though ironically we do read some of the same blogs.

I could have jumped into the fray, posted a comment and mixed it up. But I don't WANT that anymore. I don't NEED that. And luckily, someone had my back. Someone should always have your back.

What I thought about the most is how open I have been in the past 2+ years about my life on this blog, and how vulnerable I have allowed myself to be. I never in a million years thought anyone would take advantage of that. SO many people...my wife, my mom, my real-life friends, all warned me about doing it, and I always said that I had to stay true to myself. And I have never doubted what I was doing or how I was doing it.

Until now.

But that's something I will have to come to terms with. It is up to me to find out what the right 'balance' actually is.

We all have a lot to wrestle with, a lot of healing to do, a lot of debris to clean up. And like I have said before, some of that is just going to take time. And some of that is going to take real work. Real focus. Focus away from THIS and on to other things. Things like the project, and things like re-organizing our energies BACK to that which we care about the most, whatever those things happen to be.

And so, I am hereby taking my blog back. The project will continue over at the MiP blog. Tomorrow I will get back to basics here and move on with MY life.

It's time.

OUT.

Tuesday, July 12, 2011

Emotional Control



It is only natural, in times like these, to let our emotions take over.

Everyone feels things on such an intense, focused level. Everyone. Especially the parents. I don't think I need to remind anyone that I was a former recipient in the Marissa's Bunny iPad Contest, and it is very easy to get swallowed up by current events. In case you had not seen those current events, they were, in summary, a statement by the contest host that the contest is officially closed and the iPads will not be forthcoming.

Ever since that time, my Inbox and Heather's has been in overdrive. Comments sections in blogs have been deluged. Facebook is on fire. Cats and dogs, living together...mass hysteria!

It has been suggested that some people on the recipient list are not who they claim to be, that entire identities are in question. A reasonable thing to be aware of. Please know that we ARE aware that identity verification is essential to any process, and one member of our team you will be meeting shortly has created some very cool forms that are simple and very easy to fill out that any recipient would ONLY have to complete when an iPad is ready to be delivered. This gal's GOOD. IN fact, here is a look at one of the forms right now. Cool huh?


But you won't need to complete it until WE are ready to ship an iPad to YOU. And not before. No need to ask for something until it is needed, capise? You all have been through enough of that.

Other steps will be taken as needed, but I also urge this...do not over-stress about this parents, recipients and other members of the community. We all need to keep a reasoned mind. Too many people have their torches out.

Is it OK to skeptical? Absolutely. But we cannot afford to be accusatory of anyone. It would not be the right thing to do and it would take us off the task at hand.

As it stands, after having posted the invitation to join the restoration process, our of 40 posted recipients, I have only received 15 responses to this request, though one I know if is still probably pending. This does not mean that the rest are 'not real'. I honestly think that many people have simply had enough. I can tell you this...I am exhausted from this. My wife hates me right now. This thing can take on a life of its own and I am convinced that a LOT of recipients probably have just said 'You know what...this shit SUCKS!!!' and moved on.


I'd be lying if thoughts like that had not crossed my mind about the entire Internet. That's what happens in your head when things like this happen. So you can't just jump instantly to any single conclusion.

I assure you, we will address this in the verification process section in the new blog site, so please do not stress over it. Ask yourself this...what IF someone who was not supposed to get an iPad got an iPad? As long as we succeed in our mission, then that does not matter. If that means we get 37 OTHER kids, or whatever the number turns out to be, their iPads, that's ALL that does matter. Cost of business. Plain and simple. In life, you cannot let the monster under the bed keep you from taking action.

We have to remember, as difficult as it is as parents (and remember, Heather and I were both former recipients too, we have an 'emotional' stake as well), to keep our emotions in check as much as possible and proceed with dignity and caution.

Things will unfold as they should. Have faith, in yourselves, in each other especially and the strength of this community, to stay strong and to stay focused on what matters the most.

OUT.

Monday, July 11, 2011

M:iP! Clarification, an Apology & a Tiny Teaser


Got a note this morning, or maybe yesterday...days are a bit blurry right now, regarding the Mission: iPossible! project that we have started. It was from one of the participants in the contest who won an iPad. No need to inform you of who that is at this time, not unless this person wishes it.

Anyway, the gist of the message was that the winner had informed the original contest hosts that they no longer wanted to be in consideration for the iPad, and as a courtesy also wanted to inform me of the same. Although the winner was appreciative of what I announced and had some very nice things to say, the reason given was that one had already been purchased and so, therefore, no iPad was needed.

I haven't asked yet, but if I receive permission when I finally get the Mission: iPossible! blog up (which will act as our main website for the time being) and create the Winners Page so that I can have a checklist once winners receive their iPads, I'll list the winner there and have them as 'checked off'.

So, this got me to thinking...I made a, let's call it a somewhat arrogant presumption, that I need to apologize for. I presumed, wrongly, that the people on the winners list of the original contest would simply come on over, no muss no fuss, and be a willing participant in this project.


That was a fairly stupid conclusion to jump to, I wasn't really thinking. I'm sorry about that.

It is still, as you can see in various comments sections (not HERE of course, people don't leave 60 comments HERE) a fairly divisive issue.

I understand that, I really do, and I respect it completely.

So I need to 'put out the call' so to speak. If you were a winner of the original iPad contest, and you wish to be considered in this restoration project, please e-mail me at klilly@creatusmaximus.com so that I can add your name to our list.

Please put Mission: iPossible! iPad Project into the Subject line, and include your Name and contact information in the e-mail, along with any other information you think I need to know. Any good jokes are also welcome. I love a good laugh.

This list will remain private until I receive clearance from the participants in written form to post it publicly. I am simply trying to get a 'head-count' so to speak, since it will help when trying to calculate an end-goal. Hopefully you all can understand how important that is to actually working out all the necessary details to achieve that goal. Need to raise some capital!

Does that clarify things a bit? Hope so. I'm looking at a couple of days before I get the basic site structure of M:iP! up and running. I know...it doesn't take THAT long to create a blog from a template. But we do have other things to consider and some details to finalize.

And OH YEAH...I almost forgot...the tease part. Our little group has already secured its first iPad, via donation, and a couple other interesting things, and that means one recipient, as soon as we know who actually wants to BE a recipient, could be selected as early as tomorrow.



It is our intention to, hopefully, be able to announce that recipient, with photos and everything, as soon as the MiP! blog goes live in a couple of days!

How do ya like DEM...um...Apples?

You don't KNOW how long I've been waiting to say that. OK, just one day, but it felt like forever. :P

OUT.

Sunday, July 10, 2011

Mission: iPossible

A brief preface to this, before I continue. Anyone who currently runs a blog site and wishes to copy this text below, you are by all means allowed, and even encouraged to do so. I want to spread the word, so to speak, to as many places as will have it.

On May 13th, in the digital pages of this very blog, I announced that I was the winner of an iPad in a contest hosted by a website known as Marissa’s Bunny. I was one of 40 other families, selected in a merit-based contest, to receive an iPad, $500 worth of free software and, if memory serves correctly, I think there was also a gift certificate to an Apple store for $70.00 that could be used for hardware, like a case for protection and so forth.

I say ‘if memory serves’, because the contest ended several months ago.

To date no one, to my knowledge, has received an iPad.

To be absolutely clear, I can only say with 100% certainty that I have not. No one that I have been in contact with on the winners list has said they have received one. None of the winners who have blogs have stepped forward to announce that they have received theirs on their blogs, and the other winners on the list, who do not have public blogs, I do not know how to reach out to.

If you follow the blog that originally hosted the contest, you will see mention of various delays in the shipment of the iPads, you will also see, now, the site has gone through some fairly major changes and the iPad contest overall has been suspended.

This is a very difficult thing to write about, let me assure you. It is very easy...VERY easy, to get sucked into a lot of negativity, suspicion and outright emotional chaos when situations like these present themselves. Many bloggers have been receiving e-mails from winners searching for answers, I have received them as well, and it can be hard to navigate waters that are as uncharted as these.

Many bloggers have already started posting about it. Some, unfortunately, in the structure of what they have written, are dangerously close to libel. I urge every blogger who writes a single word to be very, very careful about what you say about a person and how you say it. I am sure nobody wants to get entangled in anything that could cause you any kind of problem in the future.

I do understand that in times like these, questions bounce around like pinballs, you get a lot, and you feel the need to answer them. I get them myself. Is it true what that e-mail said about Mike, Ken? Do you think that the iPads are really going to ship, Ken? What should I do, Ken? Is this whole thing a scam, Ken?

The plain truth is this...when something like this happens; there is no easy answer to ANY question. At least, not one that anyone can give you that can be given with authority, certainty and fairness.

But the Internet is a large place, full of information. You do not need me, or anyone else, to tell you what or how to think. You don't need me or anybody else in order to draw your own conclusion about whether you think you will or will not be receiving an iPad. You need to do your own due diligence and research and come to your own conclusions.

Information is out there, you just have to go looking for it.

Hell, for shits and giggles, look up my name. If you type in Ken Lilly, or Ken Lilly Palisades, or Ken Lilly Blogzilly, or whatever, you will find a bucketload of information about me and all the stuff I’ve worked on, interviews I’ve done, toys I’ve designed. But please don't search for Ken Lilly Naked Dress Bachelor Party Emergency Room Gerbils. There's just no NEED.

My point here is this.

I am not here to smear anyone. I am not here to tell you whether I think Marrisa’s Bunny was on the up and up, or whether this was just something that got out of hand. I am not here to tell you what to think. Or how to feel.

It is not my place. Nor my responsibility.

I can only tell you what I think about how our community should behave, and what I, as an individual, plan to do. I can also share with you my experiences with this contest, as I was an active participant in the process.

It is my intention to proceed by this assumption, and that is that the iPads from the contest are not going to be forthcoming. And honestly, even if one showed up now, even though I believe it never will, especially in light of the latest statement from the website that any parent winner that has any involvement in the 'threats' is off the winners list, I would mark Return to Sender and give it back to the carrier.

I do not desire it.

That is not to say I have previously been involved in any of the suggested perceived 'threats'. But I fear that this post will be taken as such, even though I have said time and again that I do not have all the answers and that I urge you to reserve judgment and form your own conclusions. I am hopeful that this post is not viewed that way, but I am also a realistic man.

As realistic as I have been about this contest, as it has felt strange for a long, long time.

It has been stated on the website that the contest has been suspended indefinitely for reasons that do not, to me, make any rational sense. But a lot about the contest doesn't make sense and hasn't from the very beginning, in my opinion.

There is no timetable. And there never was. It has already been months. The contest never had a verification process that I had to fill out. I never had to sign a thing. I never had to send in paperwork to prove I had a Special Needs child.

Then $500 in software was added in later, instead of a handful of new iPads for Special Needs families. To me, and again, this is just my opinion, this was a bit weird. It didn't really pass my own sniff test, but again, who am I to argue someone's generosity? I just felt like even questioning it made me feel like a complete asshole. But I kept thinking that it would make much more sense to, if you are donating something, to donate a few more iPads to cover more kids, not $500 in Apps for EACH winner.

While generous and of course I was EXTREMELY gracious and grateful in my communications (which I would be more than happy to share if I was asked to, BTW), this was just odd, since apps are usually free or $.99 - $1.99 and that served to delay the iPad shipments even longer as families struggled to fill an Apps list, with some people finally giving up and saying 'We can't THINK of any more Apps, just keep the rest of the money!'.

As far as the shipment of the iPads, we had been told iPads had shipped several different times, in quantities whose numbers kept changing, then told they did not. I was told that mine had DEFINITIVELY shipped. Later told it had not. Again later we were told that 25 people absolutely, positively had their iPads shipped, and that UPS picked them up. Then told that UPS had screwed it up. Later still came the message that 'Everything has shipped.'

Still, as of today, July 9, no winners have stepped forward that I know of.

Of course, the question always remained about the corporation...I kept wondering to myself...why would a corporation that was so magnanimous, so willing to give of itself to families of Special Needs children, NOT want to take credit for that publicly? The answer to that question was always that the company did not want other groups coming to them hitting them up for more charity. I've never heard of any company, EVER, that afraid of confrontation in my entire life.

I have also never, not once in my entire life, seen a company not take advantage of that level of giving from a PR perspective, especially when you are talking about this kind of expense and this particular community. ESPECIALLY in this particular climate when, nationwide, special needs kids are getting CREAMED by state governments and their revisions to their benefits. What BETTER time to become a savior to a community that is currently being slammed to the canvas?

And the corporation would not be WRONG to do this. To me, remaining anonymous does not grant them some higher moral standing. It is natural, it is normal, it is expected that they would do so in the corporate world, and I doubt there are many rational thinking Special Needs Mom's and Dad's out there that would begrudge that. I certainly would not.

But in this case, they did not want any attention whatsoever. You know how I feel about 'corporations', so I have to be sure I don't let my personal anti-establishment feelings cloud my perceptions here. But why WOULDN'T they want the publicity? Could it be because despite their massive success they couldn't find one person among them capable of shipping a single pre-packaged, already-ready to ship iPad out of 40 while I, out of my house, can ship over 287 INDIVIDUALLY sold loose Star Wars figures in a single day (my personal best record on eBay ever, 'natch) and regularly ships items from all three major carriers out of my house each week with no help whatsoever?

How does a corporation with this much power, this much money and this much generosity screw something up this badly?

There are just too many inconsistencies in the information I have received over the last couple of months via website and e-mail, and so much continued and, in my opinion, deliberate vagueness. And do I ever mean 'continued'...(on blogger's comments sections), because even as of this afternoon as I finish writing this, it is ongoing on Ellen's blog.

All of this, in combination, has helped guide me to the conclusion that from this point forward, I no longer have faith in anything regarding this contest, and I no longer WANT to care about it.

It is not relevant to me anymore.

And I will say this...I am still reserving FINAL judgment that this may have nothing at all to do with Mike until all of the facts are in. It could still very well be the company he works for, or some third party, or the 'mysterious person who was fired'. And that's why I am trying to make sure everyone understands...this is a commentary about a CONTEST.

Not a MAN.

This is based on MY belief, MY researched opinion.

It is still going to be up to you to draw your own conclusions.

But I assure you, that every step I take from here forward will be based on my belief. What else is a person left with other than that?

That is not to say that nothing is being ‘done’ about looking into the matter or that I just wash my hands and turn my back. I do not want you to think that not answering questions or being elusive with questions I have received does not suggest inaction. But please, I am asking you, as a matter of trust, which I know is extremely, EXTREMELY, hard for you to do at the moment, to have faith that the correct and just steps are being taken to look into this contest that are 100% legal and 100% above board and 100% fair to all parties and are not threatening any harm to anyone, especially Mike's family, as he has stated.

If you are a reader of my blog, you know I am an open book.

Some would say too open. I have always disagreed with that. I always hoped one day that this...tendency of mine would serve a greater purpose. Please allow it to serve me now. Trust that what I am telling you has merit, and then let this part of it go. Do not let this become something ugly, something that tarnishes our community.

It's inevitable and I cannot stop this, but already I can see on various blogs and comments sections battle lines being drawn and sides being 'chosen', and that is a disturbing prospect.

But if you can, before you suit up and grab a weapon, let things run their course.

Be dignified.

There is a real danger here. A danger of getting swallowed up by the negativity, the darkness, which this entire situation could possibly generate. Therefore, a different response, a different approach, is absolutely required. It is extremely important; no it is paramount to remember that, in the end, this is only about one thing and one thing alone. There is only one 'side' you need to choose.

Our kids.

Nothing else matters.

For the past few days, via telephone, I have been speaking at length with Heather, who writes Little Wonders about her daughter Zoey and the rest of her beautiful family. And direct from the Credit Where Credit is Due Department, this is 100% her idea, I am just the one writing this statement because...well...verbosity and me? We get along.

But it is our intention, along with some friends of hers and possibly others who might wish to participate voluntarily, to make the attempt to finish what has been started that both of us think will not be completed.

Our mission?

We are going to make every effort possible to get these children their iPads. And I don’t mean the contest iPads. I’m talking about this from an entirely different angle, because like I said, as far as I am concerned, those iPads don't exist, because the website says they are not going to ship until this is sorted out, and I do not see that happening.

Now, should I be wrong in this assumption that they are not coming and should the contest iPads show up to the other 38 people at the same time that we hope to be successful in our restoration efforts? So be it, the kids will have two iPads and they can sell one of them, give them away, whatever they please. The iPads will be theirs to do with as they choose

But that is irrelevant to me at the moment, because all that matters to me, to us, from this point forward is restoring some kind of balance, remaining positive, and staying focused on what matters most.

And that’s exactly what we hope to do.

We are, currently, smack dab in the middle of figuring out various ways of exactly how to accomplish this task, which we are calling Mission iPossible!, and as we know more you will know more.

I can tell you that it would take months to establish our own Non-Profit Organization as a 501(c)(3) through the IRS. We do not want to wait months, so we are looking into alternatives. Possibly piggy-backing with an existing 501(c)(3) organization, something like that.

Why do I bring this up? Trust. Because if it comes down to some kind of fund-raising campaign, a 501(c)(3) will provide you with a legitimate tax deduction for larger donations and a record of its existence will be reviewable through the IRS and also through GuideStar, THE source for verification of legitimacy for non-profits. If you want to know if you can trust it? They are the place to check it out.

BUT...other avenues are being explored first, asking for money from this community? That is a LAST step. Not the first. But each step we DO take will be done with full transparency, full disclosure, at every single stop along this road.

As part of that, it should be noted up front that because Heather and I were both contest winners originally, and because we are now both a part of this mission, it is essential that the two of us now, as of this moment, officially remove ourselves as iPad recipients in this restoration effort. It would be a conflict of interest for us to remain as such and also be involved in the process of trying to raise funds or find some other means of procuring iPads for these disabled children.

Like I said.

Full transparency. Full disclosure.

We are going to need to do a lot of things like this on the journey, like the creation of a verification process for the winners, since in the original contest no such process existed, and so on. And like any project, it is very possible that we may fail, but I prefer not to consider that as an option and to remember the old adage of nothing ventured, nothing gained.

Besides, no one ever got anywhere without trying. We certainly, if nothing else at the moment, have a great deal of determination to get us going. It may take some time, but as you know, the clean-up after any disaster is usually a time consuming process.

You should also know that the best way to get through it, the ONLY way, is to put the disastrous event behind you, and move forward.

So that’s what we’re going to do.

OUT.

Friday, July 1, 2011

Today the Bomb Falls, Finally


What a sharp contrast between the two e-mails sitting in my Inbox.

One, in great detail, outlines all of the changes that will be taking place at Bennett's school, starting today, July 1, because of HB 153, the new Budget Bill passed by the government of Ohio that dramatically slashed benefits for the disabled, the elderly, you name it.

It was gut-wrenching to read.

So many kids who will be losing services partially or in some cases entirely, many with no place to turn, many with no answers at all about what to do next.

Somewhere between 40-60, I'm not sure of the exact number. That's how many employees of Bennett's school alone, now without jobs, just like that. How many more across the state? I know how that feels. I have been unemployed now since December of 2009, making ends meet any way that I can.

Families in total chaos. Families whose lives are chaotic already. I know how that feels too. I really am in a state of complete devastation whenever I think about some of those kids and what they are losing.

What is even more disturbing is that I haven't seen a THING about this on our local news, in the newspaper. NOTHING. It's like it doesn't even exist.


And then the other e-mail, from the Governor of Ohio, the Dark Lord Emperor John Kasich himself, nearly breaking his own arm as he pats himself on the back, urging Ohioans to celebrate alongside him because of this monumental legislation that helps to balance our budget and cuts our taxes.

THANKS BRO!!! Just what I needed! You know what Kasich?

Go fuck yourself.

I can only imagine what you are probably doing tonight, maybe you actually ARE celebrating, having some drinks with the rest of your tight-assed, holier-than-thou wealthy Republican friends, all blowing each other's Popsicles and thinking what masters of ingenuity you are. You've only postponed the problems, you've only set the dominoes up to fall that much harder.

Any idiot, and believe me, when it comes to politics, I am the King of All Idiots, can see that.

This is not good for Ohio, and it isn't good for our nation, because as I understand it we are not the only state that is doing this exact same thing. When I was in Arkansas visiting my Mother I saw a piece on their local news about much the same short-term, completely short-sighted re-structuring going on in their state.


It's going to get worse, too, as Republicans have ZERO to gain by trying to stimulate the national economy now...why bother? They NEED it to continue to stagnate and rot at least until November 2012.

Politics is such horseshit. And the people who suffer are always the people who have no voice. In other words...you and me, the average person, We Who Are Without Deep Pockets. Check out this article sometime...it is a fascinating read, and it really does kind of sum it up.

As much as I am blasting Republicans (and I am a REGISTERED Republican by the way, they just happen to be the scumbags right now, but that role ALWAYS changes), it is not just a Republican problem, or a Democrat problem.

It isn't a problem for the rich or for the poor, either...it is a problem for every man, woman and child who calls the red, white and blue THEIR colors. And if we don't get our collective shit together, and soon...well, I figure both my kids are going to have to, at some point in their lives, learn how to speak a new language.


As far as Bennett is concerned, the fact of the matter is...he dodged most of the bullets that were aimed at him...for now. His Medicaid hours were cut, don't get me wrong...he went from receiving approximately 1320 hours of ABA therapy annually to 104 hours annually. But, the school can use the Autism Scholarship Program money that we were not tapping into as a fallback position (glad we applied for it when we did) and still maintain, some of the time, his 1:1 teacher/student therapy.

But because of the restrictions to the ASP and the Medicaid restrictions and so forth and the employee cuts, there will be times when he will not receive 1:1 anything, as his BT might have to assist other students and they will just have to lump him in with a group. That day Bennett just won't get any real 'therapy' that helps him along (because of the nature of the severity of his delays), but he will be looked after.

The state has hired an 'outside vendor', as yet unspecified, as yet unexplained, as yet unknown, that can review any case and determine if any person can exceed that 104 hour allotment. Now, as I have said before, this is sort of the way it works now.

Sort of. It is just that now that review is done by Bennett's Psychiatrist, not by a third party. And other evaluations are done by his Neurologist, or his Epileptologist, and so on. Then prescriptions are written for needed therapy services. All of those evals our PRIVATE insurance pays for, by the way. The Medicaid stuff only kicks in on stuff which private insurance does not cover when it comes to the medical side of things.

He did lose 2/3 of his Speech Therapy and all of his Occupational Therapy. That was a pretty big loss for him. For a kid that still can't really talk or communicate that much? It was a heart-breaker for sure.

Though still, even upon finding out about all of this, by phone and also in that e-mail I mentioned, and knowing that he still kept a LOT of what he has, I found I could neither feel celebratory for what he kept, and I could not really weep for what he lost.


My mind just kept going back and forth between three things...to the height of the mountain I feel is in our life and how it feels like it keeps getting bigger and bigger and bigger and I can't seem to stop it...to all the people who got fucked today, from all the kids, to all the people who lost their livelihoods...because it isn't just that one school, it's a LOT of schools, and the transportation people who DROVE those kids to those schools, and the people who worked non-specialty jobs, and on and on...

And of course, to the people who fucked those people. How they sent me an e-mail saying how proud I need to be of them. If they had any idea of the intensity of my feelings. My disgust...how mush I detest them in every way. My lack of respect towards them for how they have warped and how they have twisted our political system. My own self-loathing for having voted for them and thinking that it actually MATTERED to do so in the first place.

Look...I'm not denying that in many instances, Medicaid and Medicare or ANY government spending is out of control and needs checks and balances, that's why you need controlled systems. I just do not think this particular transition has been handled correctly and interruption in services for kids with these kinds of disabilities can be DEVASTATING to their treatments.

Consistency is key, and these a-holes in the capitol building should have fucking known better. They should have had a softer transition than a sharp cut-off for the services for these kids. THERE CURRENTLY IS NO REVIEW IN PLACE, and getting answers as to when there will be? Well, many have tried and failed.

And the icing on the cake? Make sure you aren't one of the ones who tried too hard. Or spoke out too loudly. For advocacy OR for answers. Because so far, in this bass-ackwards state? Those that have tried the hardest, spoken the loudest, made the most noise? They have been bitch-slapped the hardest by the government.

Talk about ego. With a Capital 'Ewwwwww'.

I'm just going by what I've heard. Rumor only. I have no fact to back this up of course, but word on the street is that allegedly some of the groups that were hit the hardest were the ones that had the audacity, the AUDACITY, to advocate the most strenuously and even to run ads on TV. How DARE they question the royalty of the government and its bitches and the oh so very wise Kasich administration?


Representative government my ass.

I think it goes without saying that our founding fathers would be ashamed if they saw where our country was headed...but I said it anyway.

When I heard that? I wanted to scream. It is no wonder that near the tail end of all of this we got word from the school, just before we were to begin sending some of our letters and stories to media, to pull back on some of our efforts a bit.

It is probably the ONLY reason why Bennett's school is actually still operating.

Makes you almost wanna puke a little, doesn't it?

OUT.