Thursday, November 10, 2016
Back in 2007, it was a lot easier to get your hands on Baltimore Ravens tickets when you live out of state like I do. I had a good line on a late season match-up between the Pats and the Ravens for Monday Night Football on December 3rd. The only problem? Bennett was going to be induced on December 11, and there was always a possibility than my wife would go into labor before that.
Being 7 hours away by car in Baltimore were that to happen would have put me further into the doghouse than I usually found myself.
Turned out, never had to make that choice. After experiencing some labor pains in the middle of the night on November 9, we went up to the hospital and on November 10, early in the morning I can't recall the time, Bennett was born around 5 1/2 weeks premature.
Not sure if I ever wrote about this, probably did, but his problems really began there. He was deprived of oxygen, the thing is I don't know for how long, and the staff there obviously played full CYA. The sheet only read "he had a dusky color" and that he was given "some oxygen" but it never said for how long and none of us could get any answers.
Hindsight is the only thing that tells me that it was a lot longer than anyone there ever wanted us to know. But waddya gonna do? If his encounter with the DTaP Vaccination, the onset of his Infantile Spasms, the missed diagnosis of his brain tumor and the aftermath of all that was any indicator to me, the medical community is very self-protective when it comes to the pursuit of litigation.
Most of the time, families are going to need to figure out how to navigate most shattered messes like that on their own somehow. They need to figure out where the help is and get it if they can.
I'm super bummed out today. The blog I wrote yesterday was not some old thing I put up to fill space. That actually happened on Wednesday...yesterday. My mind has been all over the place because of how...feral...Bennett can get lately. To say I'm deeply affected by it is, well, they are words that just cannot adequately express my feelings.
Later in the evening, I was standing in the kitchen and staring at the floor. I didn't even know I was doing it. I was just...I'm not sure, maybe trying to still cope with my anxiety from what happened at the restaurant parking lot. Jen had arrived back from work around 8:45, this was maybe 9:05, Bennett was almost ready to go to bed, he had been great the rest of the night, and that is not unusual, which makes it that much harder to navigate. He will Hulk out like that, and then become the most amazing, loving boy to be around.
I had been, around 2-3 weeks ago, telling Bennett about his upcoming Birthday. Getting him stoked about it. He has some understanding of it. I'm not sure exactly how much. But I always try to talk to him as if he is able to understand me.
But when Jen said to me, in the kitchen, "Bennett's birthday is tomorrow.", I began to feel tears in my eyes again. It was that kind of night, was going to be for the rest of it. But somewhere along the way, along these last couple of weeks of ups and downs, I had totally put his birthday out of my mind and forgotten it.
The tragedy is that this was not what caused me to feel like crying. It was the thought that followed. The thought that, at the very least, I was somewhat grateful that because he has such a profound disability he wouldn't have any idea what a shitty thing it is for me to have done.
The wind was cold, it helped take the sting away a little as Bennett hit me in the face a second time. We were wrestling with each other. Again. He trying to attack me in all the ways he knows how. I trying to manage each of his flailing limbs and his gnashing teeth as they sought out any of me that got too close to him.
Each time his teeth would find a target, the searing pain was a blessing in disguise in a way. It gave me a few seconds to move him closer to the car. The both of us had only just minutes before exited the restaurant where this dance of violence had begun and we had a long way left to go. Unfortunately the ferocity of this encounter resulted in a much longer process of getting where I needed him to be.
As if the car provided refuge, or safe haven. Not a chance. It provided only an arena for the sparring to continue, with less of a possibility of Bennett getting seriously hurt in a parking lot, and a smaller space in which there might be an opportunity to ease him out of this latest rage.
I have Post Traumatic Stress Disorder. Long story short. Violence toward me in other circumstances in my life leaves me vulnerable to having reactions that are severe when I experience violence toward me in my life today. It's been stacking. I take things for it, but I may have peaked. My hands shake a lot. Sleep is difficult. I fear when Bennett comes home. I gave up my career, many aspects of my life, because of Bennett's disability, and it puts my psyche in an awkward situation when it comes to learning how to cope with the idea of regularly being abused by my 9-year old disabled son.
Most of the time though? I am the one who can get him back from the ledge, ease him through it, better than anyone. Despite ALL OF THAT. Yay me. It's nothing to celebrate. It is a matter of survival mode more than anything else. For us both.
Except, tonight he wasn't easing out of it. All he wanted was to rip me to pieces.
Sometime after, when he had reached the point of exhaustion, and I had finished sobbing and cursing at God, I had a chance to consider why this incident was so different. So visceral. I wouldn't let those thoughts sink in fully until I got through the rest of it.
It was difficult to wipe the tears and snot from my face because my hands were shaking so much. I needed to walk Bennett back inside. It felt like it took forever because every movement had to be so measured, I was dizzy and I was coughing like crazy…this was a full-blown panic attack unlike any I had experienced in years. But I was going to take him back in to the restaurant. I had a bill to pay, another kid who didn't deserve to be left in there hanging like that, and I needed to make sure both kids ate. I was in no shape to cook.
This is how fucking crazy it is…he was perfectly fine to walk back in there, It was me who wasn't. I'm grateful that the staff there know me. They got everything I needed, check and all, knew I was not going to eat, and I have to be honest, I almost had to have them run my credit card like it was a phone order because I was not sure I could sign.
Why was he so Hell-bent on trying to hurt me? Because I had never tried to talk him back. I never tried to help him. I was hurt, angry, lost. I had reached an eerie emotional shut down. And all I was doing was fighting off the beast. I wasn't trying to ease the suffering of my son. And during the worst of it I was yelling. I was begging him to stop, but it was still yelling and not remaining calm.
You might say who can blame me? Well, research how to diffuse Parental Abuse, or aggression in brain damaged or kids with severe Autism, and one of the first rules is? Remain as calm as possible. I should have that printed on my underwear. Wait that…kind of didn't sound like I wanted it to.
When he first began to unravel...when we were first sitting in the restaurant, I was calm and tried to do what I always do. Cool and collected, reasoned, slow speech, talk him through, ease him, comfort him. He threw a bowl of chips at Carter, tried to reach across the table and grab him, I had to get in the middle and when I did Bennett reached under my left arm and squeezed until he broke skin.
From that moment on I retreated inside myself and then exploded with emotion when I reached my saturation point. Just like I used to when I was a kid. It was…maybe more devastating to me, that realization, than the whole 20 minutes of him slapping, kicking, scratching, pinching and biting me.
Somewhere, somehow, I need to find a reserve tank…and fast.
We haven't come close to fixing this problem. This thing that has been happening since…Fuck knows how long now…it's living in a house with an exotic animal, walking a tiger by the tail. Sometimes things are fine. Sometimes they are not fine. Lately things are escalating. The past two weeks to a degree that has me in a state of what I can only describe as…despair?
Where am I supposed to go from here? How the fuck am I going to save him? Marijuana may or may not be legal here soon, but it might not be soon enough. He needs something now.
And I have NOTHING.
Tuesday, November 8, 2016
I really screwed this blog thing up huh? Though I have to say, surveying the digital landscape, there isn't as much blogging going on as there used to be. Many that are exist to serve up top ten lists or slideshows featuring tantalizingly tasty teaser photos of boobies that oddly enough aren't in the actual presentation.
Or…so…I hear? I don't look at all that shit.
Main reason I started having big gaps in my blogging, back in the day, was because my wife never liked me doing it. Wasn't comfortable with it. She wasn't happy with a lot of the stuff I was doing and at times I wonder if she truly knows who I am, or ever did.
The gaps in the blog now are due to not being sure if I care anymore. About journaling online, about sharing what it's like to be a father to a son with severe Autism and Intellectual Disability, about where my ship is headed.
This apathy has spilled over into other Social Media. I used to update Facebook with Photo Albums and I was building a page for Creatus Maximus and even swinging back around to slapping some defibrillators on Mission: iPossible…then I just walked away from it.
Instagram, spotty participation certainly. Flickr I fired up because I think it's required in order to be a member of the LEGO community but I hardly do anything with it. Twitter? My sweet baby HeyZeus…I deserve an award for the worst Twatter of all time.
Maybe I'm the Ganglord of Anti-Social Media. Known by a somewhat clever but goofy name and the same photo on all the sites, yet I never market myself or advance creatively, spiritually or any other way of relative significance.
Withdrawal is not just what I went through a few months ago when I decided to kill my video game addiction for good. It's also something I've been doing from the entire natural world, and it began around the time I felt I was failing my good friend Jerry while working for his company.
I guess I shouldn't call it "working".
I've had ups and downs before that, but this was the start of a reckoning of sorts. The beginning of the end of too many parts of me. Too many parts of those things that define my life. And I haven't recovered. This was back when I was going bankrupt, losing the house I had lived in for longer than I had ever lived in a single dwelling…EVER, when Bennett was unable to be around typical kids because of his aggression.
This was when I started to understand that the issues in my marriage weren't getting better and a separation was imminent. My eyes were opened to the realization that my relationships with both of my sons were never going to be simple, rather I would find them opening wounds in my heart I'd ill-prepared for. I was watching a career I had worked so hard to build turn to shit.
Who knew I would have to look really, really fast for the Joy because, like glory…those moments were fleeting. There (thankfully so)...but fleeting. Had they not been there I wonder…where might I be? I wonder that today when my boots are stuck in the knee-high mud of an all too usual stormy, sludge-filled afternoon of emotion after Bennett's interior pressure reaches critical mass and he has to let it out on someone he loves when it is the last thing on the planet he wants to do.
I've been trying to find my way back to writing, expressing. To something that might help shake loose the cold. Something.
Depression is a sad, shitty way to stumble through life.
My first thought was I could use my Anti-Social tools, stuff like Facebook, Twitter…you know, get my thoughts out faster. Exercise a little brevity.
I've always talked about how bad I am at that. It's the whole deal with feeling like a jackass when I post something on Twitter or Facebook and people don't know what to say. Here I feel safer, like it's my house…my rules, I've said that before too. But on the HEYLOOKATME sites, if I write something I am exposing myself.
Weird? Captain of the Dick jokes, worried about feeling exposed.
True…a willingness to talk about uncomfortable subjects is in many ways a shield.
Something else that's true.
When I was in high school, I was (still am) a bit freakish about taking a crap in an entryway bathroom of a person's house because of the stench I would probably leave behind. I was dating a very sweet, cute girl, a person you might naturally assume I would feel comfortable enough around to count from number one to number two with. Maybe even using the Love Toilet from the old SNL bit with Kevin Neelon. Not exactly.
After dropping her off at home at the end of a long date, to my chagrin I discovered I needed to bomb the enemy. And soon. I had to go, so I ran the hell out of there just as soon as I kissed her goodnight since their bathroom, as George Costanza would put it, had no buffer zone.
I had to poo-poo REALLY bad.
So much so that while I was going 75 in a 40 on rural back roads and knowing there was no place to stop like a gas station or 7-11 (this girl lived WAY out in the middle of nowhere) I came to the realization that I had no choice but to relax and let my trousers fill up. NOT an easy way to drive home...holding your butt up off the seat. Trust me.
One could argue since I WAS in the middle of nowhere I could have pulled over. Could have gone anywhere. Really? Would YOU want to go doody out in the middle of the night in some field or woods and risk being THAT vulnerable? What if some moonshine-swilling corn farmer caught me and called the cops? I had way too many embarrassing situations in high school.
And...now too, I guess.
The point is that dropping a deuce in her house is what leaving any personally charged Facebook Status Update or an Instagram pic or a Tweet feels like to me. Because in case you hadn't noticed I like to be a bit...raw.
Some people do not WANT to hear about me crapping my rolled up jeans in the 80's. And I get that too. I feel completely comfortable writing about that here, but I'm not going to write about it on Facebook. Not that I would, I mean...unless it happened last week I guess, because a story about high school isn't necessarily a Facebook Status Update anyway. Christ…me and my klunky segues and ham-handed points.
Sometimes I try too hard.
But this is MY bathroom. My buffer-zone rich toilet. I feel comfortable here. I can write freely, minimal strain, few clinging thoughts, and I feel completely at ease because I have a standing philosophy (Um…?) and it is this.
You no likee what I have to express or the way in which I express it? Don't let the door hit you on the way out…and remember to wash your hands, please. I respect anyone who stands by their belief and moves on. Not because I've let down the readership I had by failing to provide content. But because of the content itself. That shows me ya got ze balls!
As I continue to attempt to figure out what's going to happen here, if you decide to read and want to join in please do. Dialogue beats monologue. It's not surprising to me that the most activity I have had online in the last two months? A MESSAGE BOARD. How's that for going back to my roots?
Up to you…what you read. Who you support. That's becoming clear to me tonight. I'm watching election coverage and am stunned at how it's going. But at the same time I'm not. That's how fucked up the whole year has been to me when it comes to this gigantic boner of a political process.
It has repulsed me. I read two books on Voting and Citizenship…and I NEVER read books. I wanted to know from an ethical standpoint what voting is, what it means. I also wanted to know the difference between rights and duty.
I did not vote. And I was so PROUD that I had started to vote.
This time around I couldn't. My conscience would not be settled to put a yes for either choiice. Both are poor representatives of what it means to be an American. And that's sad that out of all the people living here, that was the best we could do. As a nation I don't understand why we are not more ashamed of ourselves.
So, I'll watch, see what happens, and life will unfold. Chances are tomorrow in my world the same battles will go on being fought. The same exhaustion will be there. The same slivers of hope will be piercing through the veil, reminding me that things could always be worse.
Having said that, it has been nice talking to you again. Hope it lasts.
Monday, August 29, 2016
I was going to title this writing something about the processing of a turning point. Assuming, of course, that what I am about to describe actually is such a thing, and not just another example from a long list of head-jammed-in-my-butthole moments that decorate the landscape of my existence over the past several months.
How does one begin to even talk about all that time spent away? If ever I was plagued by self-doubt, fear, uncertainty...that time has been defined by my silence here. I don't know how to dig out of this hole I find myself in...uh, ew... no pun intended...but as a person who likes to write, as a father, family man, human race affiliate...I need to. I'm so checked out of everything. From everyone.
There are many things that require explanation, backstory. You know, TMI. I'm good at that if nothing else.
The only reason I don't dive in right now is because I want to try for once to get to the point and be done. The rest, I hope, sorts itself out in my head later as I go along. If I decide to go along. With this thing I mean.
Oh yeah...the point.
I completely, totally and utterly forgot Bennett's surgical anniversary on August 27th.
Driving this point home a little for anyone unfamiliar...in 2009 my son Bennett, at 21 months or so of age, had a big chunk of his brain gouged out to remove a Stage II Oligoastrocytoma. That's a tumor to all us lay-people. That year (and every year since) I've had an anxiety build-up leading towards the 27th, and the day itself has always been difficult for me. Defined by emotions uncontrolled. This year, everything was completely forgotten.
The only reason I remembered at all was because at the request of a good friend I've been checking in on Facebook a little lately and I saw one of those "Memories" flashbacky things they do, which was a link to a post I wrote here a year or two ago about Bennett's surgery.
After the shock wore off I found myself in an unforgiving circle of thought, wondering why I forgot. I am trying to figure it out still, especially since it isn't like he has moved on from being a severely disabled person. It isn't like our family isn't a shattered, awful mess because of what happened to him.
Like I said up top...I'm processing...but I don't think that this is necessarily a bad thing or a good thing
In fact, it might just be a thing. But it might be just the thing I've been looking to hang my hat on, in a psychological, philosophical and spiritual sense, for a while.
I'll have to let you know.
Wednesday, January 20, 2016
"I know we've been struggling with staying positive in the face of how difficult things have been getting with Bennett's aggression." I said to her. "I was out and thought, I don't know...it might be cheesy but maybe we could all use a reminder."
"Where'd you get 'em?", she asked as I started unwrapping from the newspaper.
As I lay them out in a row I asked if she could tell me which one was for each of us.
"Let's see...Laugh is for Carter. Believe is definitely for you. Cherish is for me."
"I'm just that good!"
She walked triumphantly back into the other room, as if she had just won the Pick 4, past the window covering I'd picked up for her car. One that you can put on your windshield that keeps you from having to scrape snow and ice and shit off in the morning.
She didn't thank me for that one either.
I felt a heaviness in my chest...that same one I feel every day. Multiple times a day. That same one I have felt for years. Looking down at the cup I clutched the handle and stared at the word 'BELIEVE'. A small part of me wished the cup would break in my hands, shredding my skin and sending me to the hospital for a few days.
I don't know what I believe anymore. I only know what I know from moment to moment. And at that moment all I knew is that I was determined that Bennett would not have the night like he had the night before. Tonight he would stay calm, he would be happy, and if not happy at least content, and he would fall asleep before ten, not at 2AM.
And that is exactly what happened. When the trouble started, I asked Jennifer to go to her room and Carter to go to his and stay there. Within 2 minutes Bennett and I were having a great time and within thirty he was asleep. It wasn't rocket science. Not at all. I just can't explain to you why I am not able to facilitate this all the time. It's complicated.
I would be lying to you if I told you I was happy. I'm not. My youngest son is disabled to the extreme and we are pulling him off the one medication that controlled some of his most horrifically violent behavior. My oldest is angry, afraid and isolated. My marriage is a wreck. My family's ability to interact with each other is fractured. My career is a nonexistent joke. My parenting skills are laughable my social skills eroded to the point of almost being unusable. And I'm certainly no saint. I've screwed up in my life far more than I've succeeded.
But occasionally...every once in a while...I can steer this ship away from the worst part of the storm...occasionally I can do some good.
Tonight I did. And I'm proud of it.
“You were standing in the wake of devastation
And you were waiting on the edge of the unknown
And with the cataclysm raining down
Insides crying "Save me now"
You were there, impossibly alone”
Sunday, January 10, 2016
Holy crap...this one got away from me. I started writing, it was ridiculously long. Even by my standards. I started a basic recap after we got back from Cleveland. It morphed into Mr. Lilly's Opus.
Eff it. Gutted the bitch. Maybe I'll strip mine kibbles and bits to use somewhere else. Or not.
Sometimes the voices in my head are too reasonable. Boring.
Bennett's visit to Cleveland Clinic went as I thought it would, with one or two exceptions.
The first was my overall impression of his new Neurologist. Dr. New Kid was pretty good, but was nowhere near the blown off my rocker experience I had with Dr. Lachhwani. But, he is "Bye-Bye in Dubei" for two years, so this is what it is. Gotta make it work with New Kid.
The second exception was that I was not expecting definitive. While I didn't get much of it, Dr. NK did think Bennett had some Dystonia in his foot. Definitively.
The doc had rubbed a finger up Bennett's right foot and showed me how one toe was pointing weird and yeah, I had never noticed it before.
Going in to the appointment here is what I believed. My main theory is that Bennett has been taking Risperdal too long, and the effect of this powerful anti-psychotic medication is causing the muscle tension in his shoulders and awkward movements in his arms. So we could be dealing with Dystonia, Dyskenisia or both. Because of Bennett's brain trauma, things get complicated.
In regards to Dystonia. From WebMD:
Dystonia is a movement disorder in which a person's muscles contract uncontrollably. The contraction causes the affected body part to twist involuntarily, resulting in repetitive movements or abnormal postures. Dystonia can affect one muscle, a muscle group, or the entire body.
Brain trauma can be a cause. Stress can worsen the symptoms, and of course anti-psychotics can be a big deal in this. Why the cut/paste summary? BECAUSE...
I pulled this from Michael J. Fox's website. I liked the simplicity of the description:
Dyskinesia is a difficulty or distortion in performing voluntary movements...it can...result from prolonged use of certain antipsychotics. Dyskinetic movements look like smooth tics — sometimes like an uncoordinated dance.
If you don't follow my Instagram or Facebook you did not see this video I posted which shows the movements much better than a photograph really can. I don't know if a Blogger video will load...I may have to revise this, but I will give it a go here:
On Fox's site it also says this:
Unfortunately, today there is no good solution to actively control dyskinesia...Dyskinesia can worsen under stress (especially psychological stress), so reducing environmental stressors is important.
The movements for Bennett are worse later in the day. They are MUCH worse in environments like the above, a party or get together, where he is clearly experiencing stress. For example. Right now? As I type this on my tablet? It is 2:11 PM, he slept super late, he is watching his iPad and it is just he and I in the living room. No movements. Very little stress. There is some flexing in the right hand. I caught just a bit in a photo while he was having a snack.
So which one? Dystonia or Dyskenisia? Does it matter? I don't know. I don't know enough about it to know. Hence the FEAR and ANXIETY resulting in EXTRA DEPRESSION. But my choice here was just to show how similar they seem. To the lay person. Or to those of you who GET laid.
So what's the current plan?
It has to be process of elimination. We go back for a 2-day in hospital EEG. That's this coming week actually. I suspect it will show no seizures at all. But we have to be sure.
We have to wean Bennett off Risperdal. That's happening. With luck, if he has any coming to him, he can kill all of this by just getting off of this drug. A year or two back there was a major medication fuck up with Risperdal and a more...direct form of it called Invega. He developed a Tardive Dyskenisia that scared me shitless.
Why go back on the Risperdal at that time after seeing those symptoms?
There was no alternative. No alternative that would help Bennett during the worst of times. Times I will likely never share. The videos I mean. For one I don't have that much because when I would try to shoot the worst of his episodes I couldn't for long because I would have to intervene. I'm talking horrifying moments like him trying to throw himself down the stairs, slamming the door on himself, banging his head into the wall...not to mention the ways he would attack everyone else.
It was like Banner and the Hulk, but I'm talking back when the Hulk was an uncontrollable thing of rage...not the somewhat tame version you see in the modern Avengers movies.
And there is still no alternative.
What will we do? I don't know. I don't. We tried CBD oil a while back it didn't help like I hoped. I think Bennett needs something more potent. That's not legal here. To say that I'm frightened about what his future holds is a massive understatement. As the Risperdal is pulled further and further back, what is going to emerge? And will Bennett's physical symptoms go away or has new permanent damage possibly been done to him?
I worry less about the latter, as his movements have decreased slightly since the Risperdal has been decreased. But am I worried about the former? Yeah. Yeah...
So there you go. The short version. Well, shorter.