Sometimes I just get sick of looking at the desert that is this forgotten blog. So I figured I would throw some new photos of the boys at it. Needed a refresh. Especially after the last post, with the large word balloon which, happily, we've moved past.
Another problem solved in Casa de Lilly. Only 749,347 to go.
Tuesday, May 19, 2015
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.
Thursday, January 22, 2015
Do you ever lay in bed after a particularly difficult day and wonder how the FUCK you made it through the entire thing....and then feel like an asshole because no one was shooting at you, no one had their heart beating in your hands while you attempted to save a life, you didn't spend the afternoon exhausted by attempting to discover the cure for a degenerative disease?
It was just you and your insignificant, mediocre life and the stupid bullshit that you let drag you down into places you have no business being? Anybody? That happen to you?
Just curious...never happens to me, I just wonder what that must be like. ;)
Of course...I do wonder how I am going to feel tomorrow after Bennett's Quarterly Review. No wonder I can't sleep. Why these are scheduled in the early hours of the morning is beyond me. Especially since we schedule them. Not enough time for morning coffee, full routine disruption. End result?
4-5 days of constipation meets Butt. After 6 years of effort and hope meets more brick than clouds. There will be some clouds, a few fluffy ones, but most are thick grey storm clouds that don't leave one with a great deal of hope. We have to find that in other ways.
When I know what those ways are I'll let you know. LOL.
On that note...
Monday, January 19, 2015
A long time ago, somewhere around 2009 or so, I gave up smoking. I'm no quitter, but I figured, what the Hell, it was time. Especially when my then 3 or so year old son Carter caught me puffing away on a Marlboro Menthol in the garage (I never smoked in the house) and said 'Hey Daddy, when I grow up? I am gonna smoke JUST LIKE YOU!!!'
Yeah, like I don't ride on the Guilt Train enough to have tickets to spare.
So I gave up the sticks, and soon after? Decided to give up Diet Coke, another of the Great Evils of the World that was giving me a problem. I'd stopped with the sugary shit, but the carbonated, caffeine-filled conundrum of that canned concoction had me by the cojones, and I was pounding them by the half-dozen a day or more, while still having the morning coffee, the afternoon espresso, and anything else with caffeine in it.
So that had to go.
After that it was ANYTHING that had Aspartame, Saccharine, Splenda, or anything or an artificial type nature in it. I figured, why in the world did I just spend the time giving up Diet Coke, only to still be consuming Crystal Light, with all of its chemical non-goodness and the who-knows-what-shit that it might have in it and its who-knows-what-effects it might have on me and my aging self?
So got rid of that.
Then I watched this documentary called Forks Over Knives, scared the shit out of me. Of course, what scared me more was a trip to the ER in an ambulance that same year. So I gave up chicken and other meats and started trying to eat a mostly Plant Strong diet. I couldn't go so far as to call myself a pure VEGAN, because of the last few things that remained in my diet, but I was certainly what I liked to call a PROTO-Veganatarian.
I was getting somewhere at least.
If only I could get my severely disabled son to eat the way I want him to. What a huge...HUGE, difference it might make in his everyday. He eats a lot of garbage foods. But I want him to eat and not starve. He is the pickiest being I know, and getting him to eat anything even remotely resembling a vegetable is like no task I have ever tried to accomplish in my life which is, sadly, not very full of accomplishments quite honestly.
It's on my list. So is dairy for me. I have already been able to eliminate dairy milk from my diet, that was easy. Cheese not so much. I still sprinkle that shit on my food from time to time, there is NO cheese substitute on this Earth I know of that acts the way cheese is supposed to behave. If you know of one, clue me in.
Why am I even writing about this today? Just on my mind because everywhere I turn I see MLK, which of course with my crap glasses I see as MILK, and then I start thinking about all things dairy and dietary, and not all of the powerful and wonderful things I am SUPPOSED to be thinking about today. Funny how that works out. Of course, Bennett home today, and bored to boot, that makes for a more tense environment, which also has me thinking about ways to change behaviors. Ala food intake for the lad.
He's eating right now as a matter of fact...and while it isn't the worst thing in the world, it ain't vegetables.
Saturday, January 3, 2015
How's it going? Been a while. Figured I would write. Miss me?
I should look to you more often than I do for answers. What can I say? That's easier said than done. Especially for me. Instead of throwing my sinful ass at your feet I try to look for a loophole and I seek answers on the Internet. Yeah I know...I don't know why I do it either. They aren't easy to find there. More often than not I spend a great deal of time cycling through various links only to come to a sudden and disheartening halt and an inevitable 'Page Not Found'.
That or I find websites that make me a lot less worthy to be carrying on conversations with you. I don't spend TOO much time there.
My spiritual bypassing makes my current emotional predicament much harder than it already is.
And I clearly need the help, because small triggers can put me in a bad place. I remember when I moved into an apartment on my own during my recent separation, I would sometimes, in the afternoon, find myself sitting there doing some work or whatever, having forgotten to turn any lights on as the sun went down until eventually? The whole place would get very dim and grey.
Why this action had the eventual reaction and result of your boy having to choke back tears and snot and trying to keep quiet so my neighbors didn't hear me crying within the echoed walls of the barely furnished abode I cannot say.
I suppose, if I really think it through...is it just a simple matter of me trying to figure out how to let go of those things I had grown accustomed to having in my life that were so important to me. At that time I thought my marriage was finished, and my days of being a father were over.
I don't know. I only know that I experienced dramatic, and I am not exaggerating when I say dramatic, swings of emotion. Unlike any I have known in my life to date. And my life to date? I haven't considered it to be a life free of drama. Thanks for that, by the way.
Nothing prepared me for this. Nothing.
Even after moving back in, there have been and continue to be intense emotional swings, insecurities, hurt feelings, doubt, fear. But there is also hope, joy, laughter, healing, love. It is in totality exhausting.
I think that all young couples should have to undergo a bit of training. Let's call it a Pre-Marital Bliss Class. Not unlike the class I took when I wanted to get to know you, Big Guy...back when I was getting all Catholic and stuff. I understood why I had to do that. And I would totally understand why a class to prepare people for marriage would be a very good thing. And I don't mean like the class in church, I mean something more real, more visceral.
Kind of like a Scared Straight but for people about to make the biggest commitment of their lives.
I wish I knew of some...place. Some space in this world where I could go and be where there was no responsibility. No obligations placed upon me. No expectations. Maybe there is a guide there, either person or thing...some answers for me. Perhaps this guide tells me who I am supposed to be, and why? Maybe he or she or it could toss in a couple of directions, point me toward those things I need to actually be doing. I guess then it would not feel as if I am always rowing a boat with such intense voracity only then realizing that I have been moored to the dock the entire time.
If only such a place existed.
You know of someplace like that? Cause I need it. A place to center my Chakra or balance my chi or my soul or spirit, or as we say in my neck of the woods, just to get my shit together.
Maybe what I'm looking for isn't so much a place, but a state. And I don't mean a state like a State, you know, like North Dakota or something. More like a 'state', as in mental. Though if I were to be looking for a place to get closer to that mental state, I think maybe something that has a bunch of uncomfortable wooden seats might be a good call.
Know what I mean?
What am I saying? Yer the G-Man, of COURSE you know what I mean.
Or, um, in this case...Amen.
Friday, January 2, 2015
Tricky question. And one that was posed on my friend Jerry Macaluso's Facebook page a short while ago. Specifically he said 'Can money buy happiness? Give me more than a yes or no. Explain why your answer using logic and facts.'
Ha. Logic and Facts. Me. Too funny.
I'll just call it like I see it and hope for the best.
And oh yeah...hi. Been a while. More on that later. I'll have to just play slow catch up. And figure out if I still feel like doing this as I go along.
But back to Jerry's question. Money, and by money I mean Shitloads of It Via Quantities of Sickening Numbers, could help set up deterrents that would ease much of the stress that occur in the daily life of our Special Needs House. But all the money in the world won't make Bennett normal again. Ever. That ship sailed.
I could possibly get to a place of feeling a lot happier seeing him get better overall managed care, better resources, better opportunities, which might free me up to create some opportunities for myself and the rest of my family. I see that Monster Money could afford me a chance to maybe repair some damage that has befallen the relationships between me and my wife, Carter and I, and so on and so forth. I know, from the experience of having moved back in to the home after a separation that there is work in these areas that needs to occur that no amount of money will fix in and of itself, money will just assist them, but the truth is that actual work is required and real results can only be achieved from within.
Money makes this Disability Road easier to walk, but it doesn't mean I can't walk it without money. The lack of money just puts a lot of shit in the road that keeps me off of it. Slows progress.
Nutshelling it, money to me is a symptom remover. And we have symptoms in this Special Needs House coming out of our ears. Take some of those symptoms away, we still got ALL the conditions that came with Infantile Spasms, Autism, Brain Surgery, etc., and we still have the problems of any other group or people.
And then there is also this...I could be as rich as Midas, and still beat myself up every day that Bennett says Five when I ask him how old he is, after having just told him Seven just 10 seconds prior. And then a bit later same thing. And again. And again. His cognitive functions were just ripped to shreds. Money helps that some. But unless the funding is limitless in scope I shudder when I think how far we have come in some areas in 5 years and how little in others with some great things for Bennett to take advantage of.
Well, the conclusion, Jerry, is that I guess the money wouldn't buy me happiness. But it could buy me a house that was Bennetized with sinks that were voice activated, doors that were fingerprint ID locked, an on-site behavioral staff in an attached facility, everything he needed to be safe and secure. Then on the flip side an indoor pool and a 24-7 lifeguard, a small slow going roller coaster, lots of Skee Ball and other indoor type games, a basketball hoop, ice rink, and the like. Essentially my own ramped up Chuck E Cheese or Magic Mountain on Crack.
The Money would buy HIM happiness. And Carter too. And that might just make me happy. :)
Sunday, October 26, 2014
WAY back when I started this Sunday thing, I had a follow-up immediately scheduled. I had it so because I knew that I would need it. At the time, there were lots of transitions in Casa de Lilly. I even have (or had, because I just killed that old Blogger Draft), the sentence 'Get used to lots of images and not a lot of words for a while...Trying to figure some things out.'
Because after two months, it remains true. Though I fed the blog with nothing at all to be perfectly clear. No images. Nothing. But the part about trying to figure things out...that remains exactly the same, though my location has altered.
I sit here in a rented condo, living alone, separated from Jennifer, my wife of nearly twelve years who I've known for longer still, as the Dissolution of our marriage looms over the raging seas of my life like the coming of a storm. I will be talking about this in future posts, she is cool with me discussing aspects of it all. I just don't feel up to it today.
The most startling thing to get accustomed to, which is all I want to say at the moment about the separation, is the total and complete sense of human singularity I feel when I am here in this place, and how punctuated it is whenever I think of my two sons and all of the things I have lost over the past several months. Think about any of it too much, and I begin to sink into levels of depression that rival periods in this blog that I never want to go back to.
It's a fight, plain and simple, to stay on a positive course.
But fight I will, because I have to.
Enjoy some pictures, taken over the course of the last two months. Sadly, many of the photos taken of the boys...I did not take myself. They are excellent photos though and I love looking at them. Sorry I have been out of touch. Life has been...a bit on the crazy side.
Until next time...