Wednesday, March 25, 2015
In addition to mastering a few new phrases, the identification of the letters A, D, C & D by looking at them and being able to ID a few emotions by picking out some photographs, major milestones for a kid with the issues my son Bennett has, he has also managed to add the words SHIT, FUCKER and BULLSHIT to his growing vocabulary.
Thanks God, for that one. Been fun.
He is a mere 7.5 years old, and I will pause for a moment while you ponder the fact that he is seven and is identifying A, B, C & D only...yeah, it's great and it sucks at the same time. But today? I'm gonna go with GREAT. I'm happy about it. Only 22 more letters to go. SHIT YEAH!!!
Oh, and lest you think he picked up those naughty words from me. He did not. At least, I don't think he did. I know for sure where he got 2 of them. The other one? MAYBE he overheard me saying it, but the jury is still out on it. I don't swear in front of the kids as a general rule. I don't express a lot of anger in front of them. In fact, my bigger flaw is not being there for them when it matters. THAT is what needs to change more, not what I say in front of them. It's BEING in front of them more regularly.
That being said, Bennett lacks that discriminatory ability to stop himself from using the dirty stuff in any given situation. So he just belts it out whenever he FUCKING feels like it. Around grandparents, in the company of other kids with special needs (often causing what you might call a 'swear-off', much to the chagrin of the parents in the vicinity), at school, in a store while checking out and, of course, around the clergy.
Thankfully, the brilliance of the person in charge of managing his overall program in his special school spearheaded a plan. Operation: Pottymouth began a short while ago (she didn't CALL it that, but secretly I did, hee hee!) and it has had much success. She simply started by asking the team to suggest alternate words to Bennett when he would say the bad ones, and after a few times of doing that, they would not acknowledge the bad, and reinforce the SHIT out of the good ones.
I remember having a talk with Bennett in the grocery store in the early stages. I usually talk to Bennett as if he has no disability at all. I am just going to assume he understands. Better that way I think. Explained I would be proud of him if he used the good words. Stuff like that. I'd show him too. So please, for Dad, let's start using the good words all the time.
Lately SHOOT is just rolling off his tongue. It's a big win. We needed it. Of course, he says shoot when he is kicking me in the kneecap. But hey...one battle at a time. ;)
Monday, March 23, 2015
How many times in how many posts have I typed those two words together? How many times have I reported that the behaviors were on the upswing? That we were experiencing some great advances because of this new X or that new Y?
Not often to my recollection. But then again...I'm the glass half full of shit guy, remember?
Still I did go back and check. Despite the fact that this blog is so decimated by broken picture links and long gaps of nothingnesses, not to mention it really has an issue with finding a true direction (and audience, probably because of that direction and nothingness thing) Bennett's tendency to go from Banner to Hulk has been going on since a short time after his brain surgery.
Before that? He didn't have these problems.
Granted, he was having these fucking horrible seizures in the background of his head 24-7, and then when the seizures could not be contained anymore, his brain couldn't take it and he would suddenly start to jackknife and the full manifestation of the Infantile Spasms could be seen by all, and felt by him. That would last anywhere from a few minutes to ten or more, until it passed and then he would get very sleepy.
Did those explosions of brainwave activity cause him pain? Did they scare him? They seemed to knock the wind out of him, just the sheer sharp intensity of some of the convulsions, and at times he wanted to cry, or scream out.
What was going on through his eyes. What was he feeling? I ached to understand. As his father I wanted nothing more than to make them stop certainly, but I also yearned to know what was happening on an intellectual level, maybe believing foolishly that the more information I could gather the more I could do.
Helpless, ignorant and full of despair is no way to live your life.
Of course back then he could not communicate his feelings or thoughts to us.
When I think about his recent slide in the behavioral area, I started to think about days gone by. Connections were made by me, whether they matter or not, between how similar his seizure events are to his behavioral Hulk-Outs.
He will go on about his day, things will build, I can see them growing, an emotional pimple getting fatter and rounder as the day gets longer, and I will do what I can to stop it. I will try to redirect him away from what I know is around the corner. I try to be sure that I don't contribute to it, that I don't somehow (by thinking about it or having it in my head) do anything that might unconsciously contribute to its arrival.
I've learned that over the years, that I can cause things by simply NOT wanting them to happen. I'll explain some other day to those that wanna know.
But with Bennett, he pressure cooks and eventually has to explode. I don't know why. I can do EVERYTHING the right way. And I mean everything. But he still has to explode. Maybe it is because after all this time he can't communicate well. Maybe something happened in his brain during the surgery...I don't mean a malpractice thing, I mean that maybe parts were removed that usually keep people from having the problems he has.
Maybe he can't release these feelings and emotions any other way, though I have tried to give him outlets to do so. Maybe he needs the attention, though in the outbursts I try to balance attention with non-attention and keeping the place under control. All the stuff you get taught.
Or maybe, just maybe...this is the price we pay, this is the price he pays, for his life, for the golf ball sized grade II tumor being gone. For being seizure free. I don't want to believe that. But I do sometimes.
I'm standing here at my laptop, thinking about what to write, how to say it. I rigged a standing set-up only because the pain in my body is at an all-time high. Has been for months. No answers. I stopped asking questions too. of the medical community anyway. I just do what I can and accept being in agony every day. Mentally, physically, emotionally.
As I listen upstairs, to the Home Health Aide contain Bennett as he is in Hulk mode, I have to resist the urge to go up there and intercede. I'm trying to let her get into a place with Bennett where he respects her, and every time I jump in that makes her job harder. The problem is that she needs to take a bit more control, and more actively pursue Bennett when he is on the move. She relies to much on waiting for him top come to her. She has to go to him, otherwise stuff happens too fast.
It's not easy...I hear him throwing stuff, and I hope that she can get him contained quickly and calmly. I started the clock. I have a limit, an amount of time that she has, and also a certain meter of the amount of things I will allow as far as thuds. So far it is manageable.
The idea behind some of this is so that I can be down here working, Jen can be in her office upstairs working, Carter can have some more time with either one of us, and Bennett can have some guidance and someone to work with him on daily living essentials throughout the early evening. When it works? It's supposed to give all of us a lot more Freedom. But Freedom has a price, just like everything else.
I feel trapped down here. Trapped in this cold, damp basement office.
Helpless, ignorant and full of despair.
It really is no way to go through life. Not for me, not for my family, especially not for Bennett. Every time I hear how much Bennett suffers, which is, of late, daily, it sets my progress of climbing out of this depressive valley I am in back a lot of long, lonely yards.
My son is in distress, they both are, and I can't help them.
Free? Nah...I'm feeling about as far away from free as I can remember being in a long, long time.
Friday, March 20, 2015
I have quite a few unfinished, unpublished blog posts. They are beginning to stack. Some are so old I probably can't even use the material inside anymore. I start more blog posts than you can imagine, but something always seems to come up that has to take precedence over finishing them. A few dozen written in the Drafts section of Outlook, incomplete. I don't know how many in Notes on the iPad. Exactly 21, though 20 after I finish this one, in the Blogger Drafts.
I type away, often hovering over the bright orange candy-like Publish button. Rather than press it and get the cookie, I favor the dull, grey Save button and go do...whatever it is people like me do.
People like me.
By this I mean people who battle things like Depression, PTSD or Anxiety. These...I don't know...I suppose you call them disorders, illnesses, I dunno WTF. It would be more proper to only speak about myself in a matter as...delicate as this one. For me? I call it a mental illness. What does that mean exactly? Just that, essentially, I get the impression that my thought processes never quite works for me the way it does for most of you.
Brash assumptions, much? Maybe so. But this is based on years of self-analysis, introspection, conversations had with friends and acquaintances, therapists, psychiatrists, reading and research, etc. But all evidence suggests that my mind doesn't function like the average guy next door. I'm not being singularly dramatic either, no one's does, I get it. What I mean more specifically is that mine is more...for lack of a better term, broken.
Certainly not the way I wish it was. But if wishes were horses...there'd be a TON of shit in the streets.
As I thought about what I wrote yesterday, it occurred to me that the last bit, the part with the hopeful determination, may have seemed...for me, almost inspired. I could not help but pause and wonder, from where within me do thoughts and feelings like that emerge?
Couldn't tell you. You know, that whole 'People Like Me' thing.
The truth of the matter is, I can never fully beat my demons, never actually slay my Dragon. It has been and always will be there. I'm not totally at its mercy all the time, I can slap it around a bit, and hope that this keeps it from flying into my castle as often as it wants to get in, wreaking havoc. This was something I taught myself about Depression long ago.
It is here to stay.
And managing it, controlling it, not letting it consume me...trying to make it my bitch? That is a lifetime commitment. Hard work.
Maybe it is one of the reasons I find it easier to relate sometimes to Bennett's issues than I do with Carter's, day to day. I'm not talking about love here, just some of the intangibles. Though I do have a whole different post I want to write specifically about Carter and me, but another time. But I think I understand a lot of Bennett's fringe behaviors on a gut level more easily since I identify with the fact that he is disabled and because, somewhere deep down, I consider myself a person who is living with a disability.
To say I never enjoy saying that is the understatement of a lifetime multiplied by a thousand lifetimes. I like typing it even less. If Truth is something I have to embrace in order to continue evolving then I can't brush uncomfortable words under a rug and forget about them. Besides, it is more likely that the acceptance of Truth helps me to keep my Dragon outside the castle walls.
But that's just me. We all manage our personal shit differently.
It's been on my mind a little more than usual lately because of the fact that I am in one of my valleys. I go back sometimes and re-read this blog and can see gaps. Those were valleys too. And there were times when I wrote during the valleys, and man...those were some dark, dark blogs. If there is something hopeful to be gleaned here, it is that evolution keeps on keepin' on.
I'm in regular therapy now. That's a good thing. Only just getting started, but I enjoy it. The therapist is good, I like her. Tried it before, but never felt it could turn into anything long term. I think this might have a good chance of that. I still see a psychiatrist too, but that is every once in a while to manage medications. Any regular reader here, or friend of mine, knows me no likee the meds.
Sadly, I had to go up on medications for the time being. No choice. I was unable to control my emotions. Crying all the time. I got no beef with getting all misty over stuff, in fact i encourage all men to let it out and show more emotion, it's good for you. And not just whooping it up when your team scores. But if you are crying multiple times a day and constantly cleaning the tears off the inside of your glasses, and/or crying wakes you up in the middle of the night?
Maybe it's time to get a little added help.
Since I was unable to sleep as well, often up until 4-5 in the morning, the doc prescribed Trazodone. It has helped with both sleeping and the swings of emotion. Groggy as HELL though. Hoping I adjust soon. With Spring kicking in, should give me a boost that I need to help with that.
I had a bit more to go over, about Dragons and such, specifically addiction and how it relates to all this down time. I am running longer than I planned though. I am trying to get back to this whole blogging thing, but I am also intent on practicing more self-control with it.
There's will always be more blank white space to fill.
At least, that is what I keep telling myself.
Wednesday, March 18, 2015
I'm a bad blogger. Let's not even go down The Road of talking about my shortcomings as Friend, Husband, Father, Companion, Entrepreneur, Artist, and on and on and on. I've been at the end of the line in every conceivable category in every conceivable way I can imagine, for a while now. I'm in one of those bad cycles.
If there is any silver lining at all, and you know me, glass half full (of something that TASTES LIKE DOOKY!!!) kinda guy I am, I loves me them silver liningses, then the silver lining here is that I am typing this. It's a start.
And a start, whether it be for long term or for short? It's something.
The other day...and it seems that I stand oft-accused, rightly or wrongly, of only sharing the murkier stuff when I blog, so here's a nugget that has more white meat than dark meat. Bennett is geared up, about to go to Jennifer's parents with her and Carter, and he is fully loaded except for no shoes. He is pacing the bedroom, anxious to get going, and I am trying to talk to him to pass the time.
This is how a lot of our conversations go, which aren't so much conversations as much as they are monologues with acknowledgement.
"You ready to go to MeeMee's house?"
"But you don't even have you're shoes and socks on, buddy!"
"You've got your hoodie on, very stylish, little man, but no socks and shoes!"
"Think you can put your socks on by yourself?"
Still pacing around the room, waiting for something to happen.
"C'mon litte man, grab your socks, lets get 'em on!"
"We need to get socks and shoes on your feet first right?"
I think he was needing a specific type of verbal command that I was failing to give him, or there is the fact that getting himself dressed, including putting on socks or shoes, is not something he can do yet without assistance. I was just chilling with him, not really thinking about it.
He continued to pace around the bed, wringing his hands together, grinding his teeth and looking around at nothing in particular.
"MeeMee House?" He inquired again.
"I don't know. Your feet are going to get really cold with no shoes don't you think?"
"Who is going to warm up your feet if you don't put shoes on?"
My head spun around so fast I almost tore a muscle in my neck. For a second, I almost thought someone was trying to play a trick on me. No one else was there. I was...stunned.
"What? Really? That's...amazing. I'm sure someone would warm your feet buddy."
I started putting on his socks and shoes and he was just smiling. It was a glorious moment and at the same time one of the most frustrating of my life. What does it mean? How do I reach that again? How does one recreate those variables to possibly figure out why he communicated like that? Or was it communication at all? I wanted to laugh, hug him, cry, scream and slam my head into a wall.
Instead I put on his shoes, gave him a kiss and he said "Bye, Daddy." He was off to his grandparents.
As I watched him leave I felt tears welling up in my eyes. I stood in the doorway, wondering where along the way I had lost the ability to appreciate a moment like that, rather than dissect the living hell out of it because of how badly I had come to believe I've failed him in his development.
After five years and some change, I still have a long way to go. BUT...silver lining...there is a complexity to his thinking. a sophistication to how he wants to express himself, I see more and more of it all the time. It is WHY he reacts aggressively, it is WHY things can be so hard sometimes. All I want to do is find the fuel and the will to focus in on the good stuff, and be a better teacher, a better father, a better friend, to him, than I have been of late.
And so I will.