Shorty

Gotta keep it short today. This afternoon is Bennett's yearly meeting to re-evaluate if he still qualifies for the Medicaid Waiver (that which pays for all his therapies and so on). So I have to do some junk today quick and have the house ready by 3:30.

Check out this video, which I think was shot by my wife's Mom, though I am not 100% sure on it. It is from the camping trip that Jen and the kids took last weekend. Thought it was interesting.



Now that ending...that has me a little freaked. The sender of the mass e-mail to all of us said nothing bad happened, but I know how far a drop that is, and I'm hoping someone or something kept him from going all the way out to the ground. I'll have to ask Jen about it, I only saw the video today for the first time.

But Bennett is just fine as far as I can tell, so I'm sure he didn't take the full plunge.

OUT.

Like Finding Buried Treasure

I do not have a lot of anything when it comes to my Dad.

Not a lot of memories, not very much memorabilia, and a small handful of photos.

The simple story is that my Mom and Dad got divorced when I was around 5 years old. I saw him very infrequently after that, and the last time I ever saw him or spoke to him I was 10 years old and it was in a courthouse.

He died in 2006, and we never reconciled prior to that. I found out about his death by searching the Internet. No one told me, no one called. His two surviving 'biological' children (me and my sister, to whom I am also estranged) were not even mentioned in the obituary. A more detailed account of the whole situation can be found in a blog I wrote about him last November. In case you're curious or new here. Otherwise skip it. It's REALLY long. Even for me.

Clearly that relationship, and the monstrosity of a mentally unstable Stepfather that followed, contribute greatly to my overall Fucked-Upedness. I'd have to be an idjit not to have figured THAT out by now.

But, even though I didn't know him, even though having a son didn't mean that much to him, I still think about him often, and I still look at old photos of him from time to time.

I thought I had all of them that existed, but as it turns out, I didn't. On Monday this week an envelope arrived from my Mom (Hi, Mom.). She reads this drivel, you know.

Hmmm...that's weird, I don't recall her mentioning that she was sending me anything when we talked on Sunday.

In it were two photographs of my Dad that I not only did not have but had NEVER seen before. Getting them was like finding a 50 dollar bill in a coat you haven't worn in a couple of years. It was great.

I really appreciate the fact that she sent them to me.


He was in the Air Force, and I had never seen a photo of him in his dress uniform. That's pretty cool. I often wished I had chosen a different career path. Not military, but one where uniforms play a big role.

This other one...I have no idea who the other dude is.


I'll have to remember to ask Mom about it during our regularly scheduled Sunday telephone conversation, which we have managed to maintain now for I think over 2 months. I suggested it during that very dark five weeks I wasn't blogging. I felt like the distance between us physically was starting to really affect us mentally, or at least me (can't speak for her), and if we just sort of had a plan it might help to keep better in touch with each other.

We've been keeping up with it, and it helps us both I think. It's just a good thing all around.

OUT.

Look At This One

Today, I'm pointing you to Harold's blog, which is called Facing Autism in New Brunswick. I do not know Harold at all, but I read his blog a bunch, and in Harold's About Me Section, which he very cleverly re-named 'It's NOT About ME' he writes:

My interest in Autism, and my engagement in Autism advocacy, began with my son Conor's Autism Disorder diagnosis and the realization that, locally at least, no serious efforts were being made to improve the lives of persons with Autism or to address the realities of Autism Disorder. Hugs are good, but hugs are not enough. Evidence based treatment, education and residential care by properly trained service providers are required to help the 1 in 110 persons who have an Autism Spectrum Disorder.

Anyway, check out his latest blog, about...well, you gotta just read the article.

Makes me chilled to the bone to think that one day Bennett might live in a place where he has 'assistance'. I mean, that's a long way off, but don't think it hasn't crossed my mind. I don't THINK I could ever do it...but 15 years from now I can't predict what my mental state will be, what my health condition might be, my marital status, hell any number of things.

Could be dead.

Hope not, but it isn't unheard of for some dudes to be dead before the age of 57.

Anyway, check it out...worth your time.

OUT.

Bloggus Interruptus

If you knew how many different blog entries I have started, written quite a bit in, then saved and stopped without finishing or posting you'd probably short-circuit.

Well, the actual number is 27, since you asked. (You asked with your eyes...you asked with your eyes...)

Not sure why either. I'm usually very good about articulating myself, about translating my thoughts into something that resembles cohesive writing and then assembling it all and hitting 'Publish'.

Lately? Not so much. I get going on some topic, start looking over what I have written and say 'blech' and just saving it in hopes of coming back to it later. By the time later gets here, I look at it and still end up saying 'blech'.

Oh well.

It is what it is.

Waddya gonna do?

No flies on you.

[Insert any other cliche here].

In the meantime, as I recall, I promised some photos from Carter's 6th birthday party. And I intend to deliver. So here goes. Prepare thyself for the photographic onslaught to come.

First up, because I am an odd human being, I shot a lot of photos of some of what we were giving him prior to the wrapping of said gifts. Just happened to be doing a photo shoot anyway, so I figured...what 'da Hell.






That last one is a classic Trendmasters Godzilla action figure of Rodan I picked up on eBay. The main theme of the party/birthday was Godzilla, since Carter is still into Godzilla big time, though Play-Dough and Batman are up there.

So in keeping with the theme, I needed to try to find a pinata to fill with candy that somehow looked like Godzilla (since pinatas are a sort of Saunders family tradition at birthdays). Not a lot of Godzilla product here in the states PERIOD let alone a pinata (and damn I wish I knew how to make the little swooshy mark above a letter for a word like pinata - this one is gonna bug me until the wee hours).


But I did find this orange monstrosity, with the same relative proportions of Godzilla, but it was...well, orange. Oh well, in the end Carter didn't care. It went well with his cake, which also had a Godzilla on it.

I put the image together with some font that was called Godzilla and a drawing I just blatantly stole off the internet. Then I gave this print-out to the guys at the Cake Store. Somehow they transfer the image you give them to the cake. In all likelihood it is probably very unhealthy or toxic or something and we just don't know it yet.


Carter insisted he be allowed to eat the head. I tried to just not think about that one too much, though I'd be lying if I didn't ponder at least for a little while just what the fuck that means on a subconscious human level.

Anyway, party begins, and soon the pinata was getting attacked. Carter took the first swing, and a lot of the other kids took their shots.



Who actually took the first piece off, the tail, with his attempt?


Yup, that's little Bennett there, but then again...Mommy was helping. But it was about the ONLY thing about the party that Bennett seemed to enjoy. More on that later.

After the pinata, it was time for the Opening of The Gifts.






Pretty self-explanatory.

Then it was time for some cake. Again, Carter insisted that he be the one to consume the head. Hmmm...


Carter had a great time. So did the other kids. Except one.

I mentioned in a blog previously or in a Facebook thingie that I had to leave early and take Bennett home. He was either just out of it and non-expressive or howling and screeching like I've also mentioned before. These photos I took of him sum up his basic lack of interest in anything that day.





And we tried hard to stimulate him. But nada. Except when something bothered him. Then he would do his other thing. What a fucking bummer. I hate that. I much prefer to see him smiling and having FUN, which he does do by the way. But just not this day.

After I took Bennett home, I set up the last gift of Carter's that I was saving til the end. Yeah sure, it's a hand-me-down, my old X-Box, but to him it's brand new and the two games, yeah I know...USED...both work great and he loves 'em.



That's the birthday, in a very large nutshell, despite my piss-poor writing skills and equally disconnected mood. Hey...at least I posted something finally.

That's something.

OUT...

T.G.I.F.F.

You figure out what the extra 'F' means in the title.

Been a rough week.

I'm baffled by Bennett's current behavior pattern. When he is at school, he is engaged in his activities and not unhappy, making some progress, albeit very small steps...you know, 'Inchstones'. He doesn't get upset very often and all the reports we are getting from there indicate he is doing well emotionally during the day.

But at night, when he is home, he goes through periods of extreme duress. Since he cannot communicate with us I do not know why, and while we often try to postulate the reasons, we can never be sure.


If it wasn't such an awful sound/experience of his walking around and screeching, it might almost be funny when Jennifer and I start trying to figure it out.

Did he poop today?

I don't know. It isn't written on the sheet.

He might be constipated.

Maytbe. Did he get his afternoon medicine?

I don't know. Lemme see if his back tooth is all the way in.

It CAN'T be teething, I mean...all of them are in now, aren't they?

How long was his nap today? Maybe he's just tired.

Maybe he just wants to be held.

How much did he have for dinner?

Etc., etc., etc.

And all of this while trying to distract him with snuggling, food, engaging toys and the like, and none of them work for long. They'll calm him for a few minutes, but then he will start screeching and wriggling to get away, or spit the food out, or throw it, or throw a toy. He'll then lay on the floor, and bang his head and arms a few times.

And if you try to lay him in the bed and snuggle with him in the bed because you think he might be tired? Any neighbor hearing the sounds that come out of this boy would think we were murdering him. It's that intense. He will scream, stiffen and do anything...ANYTHING, to get off the bed and away from the person who tried to take him there.


So last night, his grandmother took him overnight. She offered because she thought we needed a break. I agreed to it because I wanted to have him go there as more of an experiment. And lo and behold...he was fine. He had one screech/tantrum during his bath, but other than that not a thing.

NOW what do we think? Not sure. Could it be us? How weird would that be? We'll see what happens tonight, after school. He might be totally cool, he might not, we simply don't know. It is causing us major stress though, I can tell you that.

We do the whole ball of wax the first week or so of August at Cleveland Clinic. Neuro-Psych, Neuro-Oncology, MRI, EEG, Epileptologist, 1-year Surgical Follow-up, and on and on. We'll certainly be seeking any answers we can get, but if past experience is any indicator...there ARE NO ANSWERS. No definitive ones anyway.


There never are.

I don't believe the behavior is seizure related, I don't believe the behavior is because of something going on electrically in his head. I believe that the answer is simple...he can't talk and he wants to. He wants something and he can't tell us. Sad thing is he understands a LOT of words. You can see by his reactions to words.

Earlier this week I overheard Jen saying something about the possibility of him never really being able to talk, about his development possibly never really progressing beyond a certain young age point, about Bennett never really being able to have the kind of life we always hoped he'd be able to have if we stopped the seizures and the tumor never returned, both of which happened.

A Pyrrhic victory, to say the least. And yes...I do understand things could be worse.

So that's that.


On Carter's birthday, I had to leave the festivities and take Bennett home early because he was freakin' out. This week I had meant to post some pics of the party and even (hopefully) finish my essay on Why Things Suck, but haven't had the gumption yet, or much time. Or the words, frankly.

Last night, rather than catch up on stuff like that, we took advantage of the Non-Bennett environment to spend the evening just focusing on Carter. Even though there are some things in the movie that are WAY too age-inappropriate for a 6 year old, we watched Ace Ventura: When Nature Calls. I needed a good laugh and for some reason I always laugh at Jim Carrey in the early days. Always.


He enjoyed it too, since the Ace character acts so silly. We had fun. It was pretty quiet otherwise. But I do have to admit...having Bennett not be there was weird, even though when he is here there is stress if he goes into freak mode.

I missed him.

I felt EXTREMELY guilty for not having him here. I felt...I dunno, like I was too weak and too unwound as a Dad and should be there for him no matter what the circumstances and I need to suck it up and plow forward.

Beating myself up. Oh, how I excel at that.

More of the other stuff later.

OUT.

Six

Carter Maximus Lilly turns six years old today.


Six years.

SIX YEARS.

Sometimes it feels like only yesterday, though sometimes over the past year it has felt like several lifetimes ago. My relationship with Carter has suffered some over the past 18 months. A Special Needs sibling can make it tough on everyone, especially the 'typical' kid who kind of gets pushed to the side a little bit.

That will evolve, and grow, and change as our lives do. I hope. I have a lot of responsibility there as well, and I need to start living up to the things I should do for him. I need to be a better father.

But, make no mistake, I love the little guy. He's very spunky. He makes me laugh. I make him laugh. He gets into some of the things I expose him to, like Batman, Godzilla, Spongebob and most recently Fanboy and Chum Chum (a fantastic show by the way). Of course he likes Janitor Poopatine as much as I do. Just for different reasons.


And speaking of Poopa---, I mean PALPATINE, I've tried a few times to get him more into a teeny weeny thing called Star Wars? Mmmm...not so much. But I'm patient. If he will not be turned, then he will be...hey wait, that's my kid I'm talking about shooting lightning bolts at out of my beefy fingertips.

Anyway, birthday celebration to commence this evening. Mirth will be in abundance. Photos of said event will be shared later in the week, possibly as early as tomorrow.

I just wanna know one thing though...how in the world did he go from this...


...to THIS...


...in the blink of an eye?

Six years. Wow.

OUT.

My Idiocy Knows No Bounds

Fuck Mother Nature.

There. I said it.

Well, it's actually my fault, but I'm looking for someone to blame. Might as well be that crazy, fickle bitch.

Multi-tasking on the computer.

I suck at many things.

This I am good at.


Got four or five programs up and running, working on several different things at once, trying my best to focus on one thing but that is never easy with my particular personality unless I hyper-focus on it.

So many cool things going down.

I'm groovin', working at maximum speed and capacity.

Snap.

Power goes out for a split second.

Computer?

Off.

Last two hours?

Wiped away.

My mood?

Shit.

Yeah, yeah, yeah...I know, constantly save your stuff.

I know that.


But I'm a jackass who has picked up a bad habit. See, the desktop is upstairs in my joke of an office and the laptop is on the main floor in the kitchen 'desk thingie area' that many kitchens have.

Now, the laptop has a battery, so when the power goes out it sticks its middle finger directly into the face of Mother Nature. I am so proud of you, Laptop. You rock my world and make my groin ache.

But because Bennett is here this week, and he howls and screeches if he sees me and I don't pick him up, I try to stay out of sight and earshot, so I was working on my desktop upstairs, which I rarely do anymore.

Yer sayin'...Um, Wuzzat? You go upstairs and leave him downstairs? Who is watching him you freakin' Bad Dad? Well, worry not, the Home Health Aide is here during the day this week while he is off from school.


I don't actually USE the desktop in my office much anymore either. Ever since I found out that Bennett was turning it on and off and on and off cause he liked the lights, it hasn't been working as smoothly as it has before. SO I use the laptop for almost everything now. And that battery fail-safe has caused me to pick up a bad, bad habit.

I don't hit save every five minutes or so like I used to.

That's it...I'm done bitching. Tell you this though...can't WAIT until Monday. It's been a more difficult week than most. AND, I get a slight reprieve as of this afternoon. At around 4PM today Jen is going to her sister's, with both kids. Actually Carter is there now she will just be taking Bennett.

Coming back on Sunday.

House?

It will be quiet as can be. Though I do honestly miss them all a lot when they are gone, I also appreciate the ability to try to clear the build-up in my melon. And Bennett's howling gets to me in a way I need to try to properly explain in another blog. I have headaches every day from it.


But this weekend is de-compression time for me. I've got some DVD's I ordered all ready to go. I'm most looking forward to Once Upon a Time in the West, which I do not think Jen would like so I need to watch it while she is away. I've got a list of a few things I want to do as far as household junk, and of course Red Dead Redemption will always be a part of every day.

OUT.

Sounds of Insanity

Remember last Friday's post about music, where I was talking about a blog entry I was writing that was 'sort of 're-cap' of all the shit in my life that led up to me deciding to stop blogging for a while during a period where I was, at least I believe I was, dangerously close to the edge of a cliff I would not have been able to climb back up had I fallen over'?

Well, I think perhaps that cliff is still very much in plain sight, and I'd be lying my fucking ass off if I said I did not think quite a lot about the sweet solace of turning around, breaking into a run and leaping off of that cliff and letting the wind guide me straight into whatever lies at the bottom.


One day it is great. One day it sucks like nothing has sucked before.

One hour I am blissfully enjoying some distraction, almost forgetting the awful parts of not just our lives but the lives of those close to me. Another hour I am trying to fight back tears that seem to want to burst out of me with no apparent catalyst in that moment that I can detect whatsoever.

One moment I smile. One moment I am grabbing my head, wishing I could dig my fingers into my skull and pull the raging pain that is throbbing and pounding and eating away at my will to keep fighting from behind my eyes.

One second I try to be positive and I actually succeed. One second I find myself feeling like I want to beat the living shit out of something or saying something so horrible that it hurts someone I care about.

Today was not an easy day. My God...the screeching. The howling. Sounds I never thought I'd hear come out of a kid. Sounds that had been persisting for weeks but seemed to have abated for a while. Sounds that are now back full force.


All this week Bennett will be home from Autism School since they are on a break for the week. If the rest of the days are anything like today...well, you'll have a front row seat to that final moment when one of your fellow human beings at last loses what little grasp he has left of his mind.

It might be really fascinating to witness.

It might not.


OUT.

Sounds of Sanity

I sit here, going over some photos I took last night. Tweaking them, adjusting the color and all that shit. Levels. Saturation. Blah, blah, blah.

I also sit here looking at the blog I've been working on for four days off and on. It's a sort of 're-cap' of all the shit in my life that led up to me deciding to stop blogging for a while during a period where I was, at least I believe I was, dangerously close to the edge of a cliff I would not have been able to climb back up had I fallen over.

And as I do this, the sound of the music from the Ridley Scott film Black Hawk Down plays on my iTunes.


I realized that lately I have been avoiding my usual morning fare of listening to The Howard Stern Show and then The Dan Patrick Show or The Jim Rome Show in favor of just listening to music. I also realized that this is a pattern of mine...music suddenly becomes a focal point for me whenever I am in any kind of 'repair mode'.

Music can transport me, can move me, can make me blissfully unaware of anything else around me. I listen mostly to film score music, and I know not why. Maybe because I used to play in an orchestra and so I gravitated to orchestra or classical music when I was young. My first album I ever owned was the 2-record set from Star Wars.

But more likely it is because the music from a film alters my mood in a way that the film did when I saw it. Maybe there is a link between the sound of the music and how it makes you feel when you watch a film and then when you just have the music there is a leftover echo of that feeling of the experiences from the movie.


I remember a buddy of mine (whom I miss a lot but never reach out to despite the fact he lives a half hour away) who used to work in a cubicle beside me commented on me playing movie scores during the work day. He said 'Dude, it isn't that I don't like the music, but sometimes it just scares the shit out of me. There will be this quiet, dramatic music and then something probably happens in the movie and there's this BWWAAAAAAAAHHH and I jump out of my skin'.

We always used to laugh about that.

That is a drawback...though a minor one. (Though I notice that if Bennett is around, that type of thing is very disagreeable to him as well...he don't like it at all.)


Most of the time I listen to music on a BOSE iPod dock. My God, is it a pure sound. Perfection. Got it as a Christmas gift last year right before I was laid off and we decided to keep it despite the costs and despite the fact I no longer had a job. I'm glad we did. Damn that thing is awesome.

How do you all use music in your everyday life? I'm curious about your musical tastes, how and why you play it, what you play it on, the kind you listen to and so on.

Share?

OUT.