Monday, June 13, 2011

Saved on Sunday. Screwed on Monday.


Maybe not 'Saved', as that implies something of a spiritual nature occurred on Sunday. And while I am not opposed to that, perhaps I should say that Bennett experienced something more akin to a 'Narrow Escape'.

Then he got screwed on Monday.

HOLY SHIT, handling one child, disabled or otherwise, by yourself, for an extended period of time, is incredibly difficult. I have an entirely different perspective on a lot of things. A LOT. I have a much deeper respect than I have EVER had for people I know who are single parents.

An even DEEPER respect for those single parents caring for a child or children who have a disability. It is mind-boggling to me how you cope with it.

Day in.

Day out.

With no significant other to actually be there to assist.

And most of all, I have a much broader perspective on what my wife deals with every day. And how much more I need to do around here to assist Mrs. Blogzilly in the things that happen in Casa de Lilly. I simply was not aware, perhaps unconsciously, blissfully so, just how much work she does when it comes to our boys. I need to pick up the slack in other areas, period. I used to do more than I am doing now, I've let some of that slip. I need to get that back and reach far, FAR beyond.


This experience, as I hoped, has been hugely educational, in a gazillion ways. The best way to describe it would be EYE-OPENING. And it's been fun.

It's also not been without it's fair share of danger.

On Sunday, Bennett bumped his head pretty hard on the bed-post, and he nearly got smashed over the head by a glass chandelier casing. The bump on the post was OK, and I gave him a little Tylenol and some hugs and he was fine. But I got lucky with the glass. On that one? I was saved by the seventies.


He was in the dining room, or what would be the dining room if we 'dined', but is instead an extended 'play room', and the chandelier in there, like all the stuff in the house, is Bennetized. Cable Ties are a staple around here, as is Velcro Tape. Remember the two rolls I cried over? I FOUND BOTH OF THEM. Anyway...he threw a ball or something, and hit the chandelier.

I NEVER KNEW THESE GLASS THINGS CAME OFF.

Well, I should say I never actually remembered they did enough to check and do something about it. I just heard something hit something, then a thud and a tinkling sound of something that sounded glassy rolling in there. I stand up to go in to check, and in walks Bennett, holding it in his hand, to GIVE IT TO ME.


I'll pause while I let that sink in. That's pretty mind-blowing to me, too. he clearly knew it was something that did not belong in his hands. He knew it was something that his Daddy should take care of. I also think it bonked off of his foot, cause he was shaking his foot a little.

But I was impressed, and I went in and took all the casings off and they are now stored safely away, out of harm's way.


As it happens, two bean bag chairs (actually filled with Polyurethane or PVC pellets, not beans, probably) were positioned directly under the chandelier at the time of The Incident, which is probably why the thing did not shatter when it crashed to the floor. That's my only guess.

Lucky.

Lucky that it didn't hit him first.

Lucky that it hit something soft second. And very cool that he knew to bring it to me.


It stings to think of the progress he's made when I think about what his social worker told me as I was walking out of his school this morning. Because of the recent legislation that the Ohio state government has seemingly passed through, the funding for Bennett's program at the school looks like it is going to be cut.

Dramatically.

He was receiving 1 on 1 ABA Therapy, five days a week, and some Speech and Occupational Therapy, at the school, from 9:00 AM to 4:00 PM with a lunch and other breaks, and while I wouldn't say he is setting any records for development, he is making some progress. Not progress the way most people measure progress. Not milestones. Inchstones. Remember, this is not a typical child. He has to be trained how to take off his own shirt. He still cannot effectively communicate even the simplest things much of the time. You can't ask him to repeat something and be guaranteed that he will or even can.

And while he can SAY Daddy, you can point to me and say 'Who's that?' and he can say 'Daddy!', but you can ask him that again a minute later and then he will say 'Mommy!'. In other words...he has a LONG way to go. A LONG way.

Today, I learned that path got even longer. See, a lot of those therapy hours were being paid for by his Ohio Level One Medicaid Waiver, a form of state government assistance for a person, like Bennett, who is disabled, that is not based on the income of myself or Jennifer and ONLY applies to him, not to anyone else in the family. Everybody else, including Carter, is on regular, private insurance. But the state of Ohio's newly elected government, the one I very stupidly helped vote into office last November when I voted for the very first (BUT NOT THE LAST YOU CAN BET YOUR AUNT PETUNIA'S ASS ON THAT) time, is trying to slash it's budget by fucking the elderly and the disabled, amongst other folks, with a lot of VERY short-term thinking.

From what little I understand, they are limiting the therapy hours that Bennett and others like him can receive through Medicaid down to 104...ANNUALLY.

Now, he can still use something called an Autism Scholarship Program, or ASP, which are funds that can be collected from the school district (I believe this is how it works) since he is not attending public school but we are taxpayers into the public school system and have a child who meets this Special Need to pay for more sophisticated services, like a special school for children with disabilities.

BUT...because there are not enough of those that exist, it can't maintain an institute like Step-By-Step Academy, which existed primarily because it served so many kids who had extreme needs, and who used Medicaid as the primary source of funding. That funding goes away, most of the income for the school goes away, most of the teachers go away.

So the only option for Bennett that we know of, right now, is that he can stay at SBSA, but it will be a 1:4 ratio, not a 1:1 ratio.

I'm still not 100% sure where all the chips are going to fall, or what is going to happen. All I know is that when I was driving home, I had tears coming down my face. I could not believe that things were going to become harder for my son. I just did not want to accept it. Why does it always come back to this feeling like I am back to that hopelessness that I felt what I watched The Road? Just when I feel like I am starting to feel like I might be stepping away from it?


It wasn't fair. It wasn't right.

But what ever really is?

It wasn't fair or right for him to get the fucking tumor in the first place. Or to have the seizures, or the ASD, or anything else.

And all those other kids.

Jesus.

I felt sick to my stomach thinking about the Mom's and Dad's driving home today that might not have any place to turn to, that may have to place their child back into a public school system that doesn't give a flying FUCK about kids with disabilities.

Felt even worse driving back to school to pick him up, as I saw all the employees outside, wondering how many of them, in a few weeks time, would be in my boat? Essentially unemployed. Yeah I make a living, I string together whatever I can, I GET BY, but it is hardly a 'stable' career anymore, it's in a state of flux.


And the irony of it all?

I remember all the things we used to talk about when it came to me staying in Columbus Ohio and NOT going out and attacking the Toy Industry again with renewed vigor when my own company fell apart in 2006 and again when I was laid off in 2009. The subject instead becomes one of 'Ken you need to change your career in your early 40's.' Not that the reasons for being STUCK here aren't hugely real. Our house was appraising for FAR less than what we paid. Now look at it...it's falling apart around our fucking ears.

At least there's still family. I'm still only 6 1/2 hours from my Mom...oh wait. Nope, she moved to Arkansas a couple of years ago.

And of course because Bennett was getting such EXCELLENT benefits by living in this area. Um...well, now THAT'S not working out so well either.

All the reasons for moving to Columbus to Baltimore, from MY seat, are getting thinner. But a lot of it was for Jen and her family, and I have to keep that in mind during this pissy, anger filled rant. And I LIKE the fact that the kids get to see so much of their family, and I cannot deny what a HUGE factor Jen's family has played in helping with, well, with everything.

So there is still that. And I also admit to getting a great benefit from getting to know the Saunders, even though I make it painfully slow for all of them. We are who we are, but I take comfort in knowing they are there.

As I pulled back into the parking lot of SBSA, I kept wondering, do the suits in politics just forget one day what it was like to be a regular human being? Like one of the dudes or gals working here? At what point does this happen? How much kickback do they get, how much pole gets smoked, how many wheels get greased before they simply forget what it was like to be one of 'us'? Those who they are supposed to 'represent'?

Because even the BEST ones cannot resist. They are ALL assimilated.


I just don't believe in our society that true representative government exists, because in order to gain real power, you have to join the 'other side', and once you do, you cease to represent this side, you represent 'THAT' side. We live in an Oligarchy, not a Democracy, and this great nation is headed for a the smelliest shitter imaginable. We are seeing signs of it everywhere, and it is so very, very disheartening.

Trust me...fifty years from now, when I am dead and buried, if you are still alive, find this post and read it and see if I had any idea what I was talking about. See if we are all speaking Chinese or some other Asian language. This country has forgotten almost everything about what made it so great in the first place.

How could anyone who thought this legislation was the right idea even feel comfortable sleeping at night? I guarantee you that anyone who voted for this piece of shit legislation either doesn't have a child with a disability...or has plenty of money to where it DOESN'T FUCKING MATTER because they can afford any private therapy they want.

Supposedly, and I could be wrong here...again, I can't really understand a lot of it...I read in one of the reports I received from one of the people from the school, there was to be, and there still very well might be, some 'contracted vendor' that will conduct a 'pre-authorization' process to determine if a disabled person can go beyond the 104 allocated hours if it is determined there is medical necessity.

Now keep in mind...this was actually being done ALREADY by Bennett's doctor's by the way, this wasn't just shit his Mom and Dad handed in, we needed to get prescriptions to get the therapy certified as 'medically necessary'. There are all kinds of tests the boy has to take and evaluations that he goes through in addition to seeing doctor's.

But now there will be a 'contracted vendor' in ADDITION to all the evaluations, IEP's and physicians? Hmmm...I wonder whose cousin THAT is in the Ohio State Government and what cost does that add to the state budget? This just sucks in all kinds of ways. And of course, you cannot find any actual DATA on any of this...ANYWHERE.

Maybe I'm just pissed, looking for conspiracy when there isn't any? Maybe I'm just angry at myself. Angry because there was really very little that I did, personally, to try to stop this. I missed rallies and letter-writing for a variety of reasons, like house falling apart, my throat infections and trying to solve that problem, scrambling for odd jobs, and on and on...but are they reasons or excuses?

Would anything I have done or said actually mattered or am I just telling myself that to try to make myself feel better for missing the boat on so many opportunities to make my voice heard? Or, am I telling myself that because I know damn well that deep in my heart my voice wouldn't have made a damn bit of difference...it never does. Not when it comes to bullshit politicians trying to pull the wool over people's eyes, show quick results no matter who it hurts, to a nation or even a state of people who really could care less, for the most part, about a bunch of 'retards'.

I don't know.

Water under the bridge I guess.

All I can know for sure is what I know today, and that is that the future for Bennett is more uncertain than it has ever been, and this is a shitty feeling that makes me feel sad, angry and most of all...helpless.

Not just for him, but for a lot of other kids, too. I watched them, as I picked up Bennett...again expecting problems because of the no Mommy factor...again pleasantly surprised. But so many of the other kids have severe disabilities at this school...how will they make it in ANY public system is beyond my comprehension.

I was just wrecked by the time I got Bennett buckled in and hit the road. I wished Jen would be at the house when I got home, though I knew she was not going to be for days. I looked at him through the rear-view mirror and got tears in my eyes again.


He is such a sweet, beautiful kid. So fragile and helpless, yet so tough and spunky. I love that boy in ways I can't even put into words that do it any kind of justice at all. I couldn't help but get lost in thought while looking at how...little...he looked to me.

I'm sorry we let you down, kiddo...I'm sorry we put you in this position. You don't deserve this. You deserve a chance at a better life. You deserve to at least have the same chances that everybody else has, to play on the same fields, to ride on the same buses, but your field costs more money that they want to pay and there's no guarantee that you'll be able to actually play on it, and your buses will always be forced to be shortened, even if they say they won't be or won't use the actual 'words'. They won't call you 'retarded', they can't...they want to be re-elected, but they'll always think of you that way. But most of all, kiddo, I'm sorry I keep failing you...I really am. This bat is so heavy by the time I get it off my shoulder I can already hear the ball hit the catcher's mitt. Every. Single. Time. I have got to figure out how to take better care of you.

Anyway, that's about all I got. I'm pretty much devoid of anything else.

OUT.

15 comments:

  1. What's happening in Ohio has been happening in many, many states, including California. It's a travesty, to be sure. You should read Jeneva Stone's blog sometime for some of the most amazing commentary on the economy, the disabled, the educational system, etc. She's a poet and a Washington, D.C. based educator and perfectly brilliant. She also has a thirteen year old son with significant disabilities. The link is: http://jgirl3.blogspot.com/

    You're such a great father to acknowledge how much your wife does and how you want to step up and do more.

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  2. I have so much to say but it's late and I need to get to bed if I'm going to survive tomorrow so I'll stick to the bare minimum.

    Have you looked into the options for Bennett in the public school system? Sophie got 1:1 ABA therapy at preschool which was through our local public school system.

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  3. I thought you had a home health care aide, so its not solely on your shoulders. I can't get one myself.

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  4. The other day,one of my older daughters was here at the house with a young girl that she mentors.The young lady is 21 and has Down syndrome and is just amazing.Would simply blow you away.Anyhow,M.E,that is her name,begins to tell me that she is heading to camp next week but camp funding has been cut by Arnold Schwarzenegger,specifically a program called"Abilities First", making it difficult for some of her friends to get to camp.So she and another gentleman, put together a letter,sent it out and,long and short of it, raised 60,yes 60,thousand dollars so children of varying disabilities can attend this camp.Seriously.If she is doing something,during this sucky beyond words, economy,for her brethrens,I best get my ass in gear,don't you think and help my child and all her friends?

    It is all such a shame.Literally a crying shame.

    One of my favorite lines from this post was:"The best way to describe it would be EYE-OPENING. And it's been fun."You have done good my friend and I am with Elizabeth,so great you see what Jen does and how difficult it can be.Mark works 13 hour days,at least and even Zoey,who does not speak and who we don't know what goes on in her little head most all the time,signs 2 words:"Daddy work" Sad too,uh?

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  5. Elizabeth, just what I need, more depressing blogs to read, Elizabeth, but I'll give it a look-see.

    Elaine, I did look into the public school system, it's bleak what they offered Bennett here, so that's why we chose this option.

    Anonymous, we have some eligibility for Home Health Care hours. We do not currently have a Home Health Care Aide, and have had no regular one for over a year. Guess you are not a regular, huh? Even if we did? The burden would be squarely on mine and my wife's shoulders, we're his fucking parents. The Home Health Aides don't generally do a TON to begin with, but they sure as shit don't bear any of our burdens, can't really be counted on, and most of them are robots you have to program. You know what? Nope...I'm not going to dance around it anymore, that was a fucking stupid thing for you to say I don't care who you are. You really pissed me off. Funny how it's ALWAYS easier for people to say stupid shit under the safety of anonymity.

    Heather, you mean he had time to screw the disabled AND the housekeeper?

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  6. Oh and if it makes you happier, Anonymous, as I'm sure it will, we are probably going to lose that HHA eligibility too with the new legislation...so we'll be in the same boat and you won't have to think I'm an asshole for bitching cause I have it so great.

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  7. Dude! Politics!? I'm impressed with your guts. I think it sucks that you all are facing those cuts. Even Texas is facing similar cuts and though it has yet to directly affect Dora, it may soon affect her father. The college where I teach is suffering HUGE budget cuts, forcing raised tuition, though prospective students are facing HUGE finacial aid cuts. We are at the mercy of our political figures (you should call and speak directly to yours by the way, I did). But!!!!!! We are also at the mercy of the millions of people who game the system; the thieves who steal from Medicaid by their refusal to pull their own weight and be responsible. They don't know and don't care where that free XYorZ is coming from but just keep it coming. It's coming from Bennett thank you very much; from the kids who REALLY, REALLY need it, the kids and families it was meant for in the first place are losing it because the program was too far reaching, and there will always be those, who don't really need it, but want it anyway.

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  8. Richard, yeah...I've talked about that before too. No one in government ever has the balls to go after the real abusers of Medicaid or Welfare or Unemployment. I think I mentioned this in an earlier blog about a dude we know who maintains his own private motorcycle repair shop, OFF THE BOOKS, and gets disability from the government for being too fat.

    Makes my blood boil, my skin crawl, my rage meter go right to 11. We're soft of crime, costing more money, we fund too many bullshit pork projects and experiments, costing more money, we spend FRIVOLOUSLY on things like State Dinners that we could spend less on, or DO WITHOUT COMPLETELY.

    If I were elected President, which could never happen, I'm not wealthy, but let's say I was elected President, the first thing I would do is that VERY NIGHT I would cancel every single party that was celebrating my inauguration if it was being paid for in any way by tax dollars. If it was privately being paid for? Fine. If not? GONE.

    Every President has the option to re-decorate the White House when they move in. They all do. I'd keep it just like it was when I got there. WHY BOTHER CHANGING THE DAMN THING FOR FOUR FUCKING YEARS AT A HUGE FUCKING COST?!?!?

    Shit like that would ALL be history if I got elected. And I would put a limit on ALL that shit in the Senate and in the House. I'd be hated by ALL the other politicians, who LOVE that shit. They think they're royalty...that's the problem.

    Oligarchy. That's our government.

    The real problem is also that it's almost all men. If it was mostly women we'd be WAY better off. Men are brutal, selfish, posturing pricks when you get them together in groups, all trying to out-piss each other. Change that dynamic to mostly chicks you solve 3/4 of the problems in our country right there.

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  9. I'm with you on almost everything (I still believe men were created to lead though) that aside, I am with you 100%. It kills me when I pay my 10K in taxes each year realizing that it might pay for 4 minutes of Air Force One's most recent trip to somewhere it didn't really NEED to go (while I could have used 1 5th of it to take the family somewhere nice). (Acually, my 10K last year was used to purchase the last thing that went through Osama's mind...the bullet.)

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  10. And before the shitstorm starts...you have to KNOW Richard to realize that HE WAS JOKING about that man thing...I could hear the sarcasm cause I've known the guy since I was 12 years old.

    Not that anyone actually READS these comments sections, but one never knows. Just wanted to clarify.

    Don't you wish you KNEW exactly what your tax dollars specifically paid for? Or do you think it would just turn your stomach too much?

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  11. Yes, yes, I was being ironical. There is no way to express how pathetically men have failed over and over to live up to their calling. As leaders, husbands, and fathers...we have failed. Certainly, no offence to women, who have been cleaning up after men for SO long it is embarrasing. I am all in favor of woman leaders. (Thanks Ken - great blog header pics by the way. Sorry to hijack this discussion - maybe we should talk for real some time ;-)

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  12. Hell...I always read blog comments on other people's blogs...it's where I learn a ton...and how to handle certain people named "anonymous".

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  13. Wow lots of stuff in your blog today. I can tell you in AZ they are wanting to cut the allowable respite hours per year in half now. My wife and I are going to try to make it to the meeting they are going to have on it, but it is 2 hours away from us. Hopefully we can though.

    I also totally agree with you on politics and politicians in general. I say we just nuke DC and start over. There isn't a single one of them I would trust.

    Your description of how hard it is to watch kids all day by yourself also really hit home. I work but my wife watches our triplets all day, most days by herself (other than the aforementioned and occasional respite support), and one of them is disabled. I do it for her on the weekends sometimes so she can go out and it is exhausting. I'm actually glad you clarified about Dora's Daddy. When I read his comment I was wondering...

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  14. Amazingly cool that Bennett responded to the fallen light cover like he did. And...the universe gets points for having the glass mainly hit the beanbag chair!

    If the cutbacks will change the ABA therapy time from 1:1 to 1:4, that blows. However, it is possible that Bennett's progress won't slow as much as you think; interaction with other kids may give him new ways to process stuff...and the therapists may pull out their A game for a group that they may not have for a single kid.

    Maybe. Hope so.

    But...about the cutbacks and other heartless political posturing: remember politicians can be swayed. They are more egocentric than most...and bad publicity can cost a re-election. Make noise. Email your blog post from today to newspapers with a letter saying they should interview you (and X, Y and Z) for a story about the cuts. Get the word out and you can shame them into not voting like dicks.

    Oh --- and while I appreciate what you and Richard have said, please don't give women so much credit just on the virtue of our chromosomes. Yeah -- men and women are different and yeah it goes beyond the physiological. But, while there are resonable, good people who are men, there are also evil, raging jackasses who are women. :)

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  15. I say, you preach it brother. I would totally vote for you if I could vote in this country. And you are almost as cool as the Incredible Hulk when you get mad :)

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