Wednesday, June 18, 2014

Shackles


It's about access. Getting where you need to be, trying to get the info you want to know about. I've said recently I am hungry for new information.

I wasn't bullshitting. Do I ever. OK, I mean recently?

I've been looking for new stuff. Hardcore. Not PORN, you sicko. OK, maybe a little. Jokes aside, when you do research on Google or Bing or anywhere else, you run into a lot of things called 'abstracts'. An abstract (or research abstract) according to my good friend Wikipedia, is a brief summary of a research article, thesis, review, conference proceeding or any in-depth analysis of a particular subject or discipline, and is often used to help the reader quickly ascertain the paper's purpose.

And abstracts, at least insofar as it pertains to surfing for data as a Special Needs parent on the Internet, pardon my French, are FRUSTRATING AS SHIT.


The best analogy I can think of is that of a super hot woman, say, I don't know...lemme think, maybe a Scarlett Johansson, on an awesome date who lets you get all the way to third base, does all kinds of stuff to you as well, then says 'Um, we need to stop, it's my time of the month.'

WHAT!?!?!

You could have said that thirty minutes ago! Not that I wouldn't have done these things, mind you, I'm no jerk, It's just that my mental approach would have been, well, it would have been a little different, that's all. I wouldn't have, as Ray Romano once put it, 'activated the launch sequence'.

Why do research abstracts on the Internet suck it so badly? They give you a tiny TASTE of a decent bit of information, but nothing of real substance, and unless you have some kind of decoder ring, you can't access any of the article or any of the data.

You have effectively wasted your time and effort, and found yourself at another one of those Dead Ends. And we don't like those Dead Ends, do we family? We are sick of them, because time and effort? They aren't something that we have plethora of to begin with.

So I ran into a couple of FUCKING ABSTRACTS recently. Crap. But one of them kind of peaked my curiosity, because it had two things on it that sparked my interest. One was a date of 2014. That's something to note. So much shit is OLD on this here Interweb. The other, as you can see in the file, was that it showed what seemed to be a parent volume called Comprehensive Guide to Autism.


I went and found that parent volume, wasn't hard to get to. I did find it weird, still do that there is no 'The' or 'A' in front of that title. But hey...to each their own. For some reason, maybe just because everything has me on edge lately, that bugs the hell out of me though.

All it tells me? Is that there is a possibility of another out there that is better. If it is not THE guide, well, then it ain't THE guide. Get my point?


I noticed the Download the PDF link, so I did. Of course, nothing. Just a Table of Contents. I should have read the words Table of Contents ABOVE the link, but me am dumb, I mean a COMPREHENSIVE Guide to Autism? Even though it is not THE guide? Can you believe it? But HOLY SHIT ON A HAT, what a Table of Contents it is. Just LOOK AT ALL THAT STUFF!!!

According to the PDF, this thing is MASSIVE. Five volumes of research papers grouped together on ONE subject. The subject of Autism. And it is copyright 2014, which means the data could be very, very new and relative. A wealth of knowledge. THOUSANDS of pages of material that one could spend a lot of quality time going through and I'm thinking at the very least one, maybe two things could be learned. You would think...right?

Then I saw there was an ISBN number. I figure, what the Hell, I'll give it a shot. Couldn't hurt. I plug it into my search engine. Amazon pops up. That's nutty. Amazon, but no actual book. For shits and giggles I re-enter the ISBN number into Amazon directly. Well would you look at THAT!?!?

It actually, truly IS FIVE FREAKIN' Volumes, a physical set of books you could hold in your clammy, stress-induced sweaty hands, if that is your thing. Real live books, not stress. Hardcover to boot! For the elitist who digs that shit. No WAY! Waddya know? FREE SHIPPING. Isn't that just the nicest thing you ever saw?


Hey hold the phone. Five books...cost $1,282.50!?! I know I just had my eyes checked and I am supposed to go back this Thursday to actually pick out new glasses since my appointment ran long last week, let me look at that again. Has to be a mistake. No books can cost that...much...

ONE THOUSAND, TWO-HUNDRED AND EIGHTY-TWO DOLLARS AND FIFTY FUCKING CENTS!?!? FOR FIVE BOOKS!?!?

And you just have to have the fifty cents on there, because $1,282.00 just isn't quite enough. Oh but I forget my manners...I'm sorry, my bad...this is a SALE PRICE. The actual price is $1350.00. I should be grateful for the 5% savings. I am so very, very sorry for my outrageous behavior. There are only five in stock, but fear not! More are on the way! YIPEEEE!!!!

Deflated, I had to find out if this was for real, so I dug some more. Looked at the home website again. This Jerry Springer website that was originally selling it. OK, just Springer, but it felt like a Jerry Springer horror show of an episode. Sure enough, even though the convoluted Excel Spreadsheet that you download for pricing was about as comprehensible as a Stanley Kubrick film, I managed to make my way to a page that had the pricing listed in a manner my pea brain could understand.

The pricing was confirmed.


I'm flabbergasted by it. Unreal pricing. Breaking it down off the original price? That is $270.00 per book. No book is worth that. None. Well, wait a second. A book written by Scarlett Johannson, directly to me, personally and to no one else, with photographs that were taken for me and no one else that show a little more than what you typically see on the Internet? I'd go over $300.00 for that.

But not much higher.

On the one hand, I get it. It's a series of medical journals, and doctors and other people who write all this stuff all expect to be paid ridiculously insane amounts of money for publishing their papers. But the fact is that much of their research, not all but I have to imagine some part, is funded by taxpayer dollars, and it bugs me that I, as a taxpayer, can't get access to the results.

I mean...if any amount of taxpayer money, and I mean one penny of it, went to any portion of that five volume set, then I believe that I should be able to view what's in it. Period. Because technically? I helped pay for it's publication. ALREADY.

That's a hard thing to prove, and I know I just sound like a whiny bitch. Maybe that is what one becomes after a while...jaded and frustrated. I spent this afternoon driving my son home. Had a fantastic day at his Special School according to the DCS (Daily Communication Sheet). For reasons as yet undetermined, he had the King Daddy of all Meltdowns on the highway halfway home. Biting himself, kicking at his brother, screaming.

I had to pull the car over. The usual attempts at soothing him weren't helping. I discovered that by removing one of the straps of his saftey harness, a strap that has been used a thousand times before and he has nevr had issue with before, seemed to calm him down just enough for us to get moving again. the strap was not too tight, was not hurting him, he just decided this was not something he liked.

Today.

I had to move Carter to the front seat, and drive both boys home illegally (Carter is too young for the front seat). Not before Bennett had bitten me in the arm trying to get him as safely secured as I could, kicked me in the face twice and knocked my glasses off my face. I was a sweaty, drenched mess, and as I was driving the rest of the way it was all I could do to concentrate on the road and not the stabbing pain running up my neck and shoulders, all stress related.

During the ride, I thought about this guide, This comprehensive guide. Wondered if there were answers in there. Not just for Bennett and I, but for ALL the other parents on the ragged edge who watched their kids suffer and agonize through every single day.

But how can I know? I DON'T HAVE ACCESS. Unless I want to drop that kind of cash. And friends, I don't know about other families, but I don't have those kinds of extra funds just lying around. And when I do, they get sucked up by other things easy, like $900.00 Special Needs strollers and other stuff very, very quickly.

So, what now? Nothing. Instead of getting access to that meat, we'll have to get by on whatever I can find that may have been dropped on the Internet floor somewhere, anything to keep me nourished with some new information that I can use so that maybe we can take a couple of steps forward.

It isn't easy, and it isn't comprehensive, but what about this roller coaster ride ever has been?

OUT.

Monday, June 16, 2014

Holiday Road


Father's Day was yesterday.

Was in the midst of writing a post all about Bennett and his aggressive episodes. A take I haven't gone over before, and one that I need to get out, but tabled it. Some things to process about it. I am really lost in some aspects of treatment plans for him. And some of it? I don't know how some people do it.

As for the Father's Day holiday, we didn't do a lot here, and that statement is not one of disappointment. Need to point that out. I have very low expectations of Father's Day and that is by design and personal choice. Gone over that before too. But I can't find the post or I would link to it.

As for the day itself...Carter, my older son, who is nearly ten, drew me a cool personalized card with a cake on it and gave me a hat. Bennett was prompted to say 'Happy Father's Day!' from Jen, my wife, and it came out like 'Habby FahRah's Stay!' Not too bad for a first try. I'll take it.

They went for a long bike-ride at a park (Bennett in a pull-along, which he slept in for half the ride). 9 miles or something. I didn't go with, not just because I have procrastinated on getting my bike tuned up (sorry Mom) but also because of this really difficult issue I am having with my back door.

I do not mean to my house. You may hate the TMI stuff, but I have a bleeder down there giving me a bit of a hassle. I've blogged about it before, and yes, it was a long time ago, and yes the issue has never been resolved. I'm nothing if not consistent.

At least I am sparing everyone the colonoscopy post I had planned. I had one of those about three weeks ago or so. Maybe I should write that post. NOBODY tells you what really happens, especially on the preparation day, and perhaps it is my duty (hee hee...DOODIE...) to all the people out there nearing 50 to tell them exactly what they are in for.


Bottom line (tee hee...BOTTOM) is that there is nothing down there that I need to be overly concerned about. Other than the massive unattractive shape, unsightly hair and general size. But I do have an internal roid that while not overly ginormous is in an awkward spot and it gets a lot of damage. The best analogy is that it is a like having a boxing speed bag hanging awkwardly in the frame of a turnstile door of a hotel. It just keeps getting hit over and over and over. Surgery is not an option, but we might need to band it off. That might be an option.

Lovely image? Sorry. This is Life. This is Stress. I didn't have this problem before Bennett started having all these major things go down. Bennett's issues started in 2009. My health issues started happening full force in 2010.

Speaking of butts...my own and my stress levels prompted me to take a fresh look at an old documentary. Not sure if I ever mentioned it, and if I did I apologize for the repetition, but I do that quite a bit. This blog is sort of the same story told differently over and over, ever notice that? No wonder this thing never takes off.

But the documentary is worth mentioning again, since Stress is such a key component of our daily lives. By 'our' I mean the collective world of Special Needs Parents. The butts I am talking about are the large, bulbous and colorful hind quarters of the baboon, and one particular group of baboons that Dr. Robert Sapolsky studied in his documentary Stress: Portrait of a Killer.


It is a fascinating documentary. I love it. And I think Dr. Sapolsky is a fucking genius. Not to mention he just looks like a great dude to chill and smoke some weed with, doesn't he?

In the documentary, and you can watch the entire thing for free on YouTube, which is evil, but you can, somewhere around the 38 minute mark it introduces you to a group of Special Needs Mom's (since Dad's like SD, both Erics, Ken L. (the other one) and many others never, ever, play a role in caring for Special Needs kids and it is usually the Moms who get the spotlight) and starts to discuss telomeres, which is a region of repetitive nucleotide sequences at each end of a chromatid...um whuzzat? It's some brain thingie we have in our heads that is directly related to stress regulation.

And here's the kicker. They start to wear down with repeated use.

Because they aren't supposed to be hit like this over and over and over and over. The jist of the documentary is essentially that stress was supposed to happen quickly for mammals. That's you, me, the baboons, we are all mammals, yeah? We are all designed biologically to experience stress fast, and like the good doctor says early in the film, stress was supposed to be over very fast, or you were.

But in today's world, we are bombarded with it over and over and over and over. And Special Needs Mom's...ahem PARENTS...according to the documentary and a study that was conducted by looking at the wear and tear of their telomeres and the relative time spent caring for a child with a disability came up with this rough equation.

For every one year the average parent ages, because of the stress we are living with day to day, we age around six years physically when it comes to wear and tear on our physical and mental health. That's an amazing stat, as it puts some people I know at an age nearing or exceeding triple digits.


But this isn't Star Trek. I have seen pictures of these people. They don't LOOK like they are that old, and they haven't dropped dead from any sudden stroke or heart attack. And while my own health is not great, I've been at this 5 years minimum. So that puts me around 76 years old. I may FEEL that old sometimes, and my physical health is certainly something that I have to watch like a hawk watching a hamster with a broken leg, but I also ain't dead...yet. 

Which tells me something...repair of the telomeres has had to take place somehow, just like the film suggests. But how? Humor, community, those are two things that the film suggest help to do it, and I have had heaping helpings of the first, some small servings of the second. But I want to know more about this enzyme the film talks about. Is it something that only the body can produce? If so, HOW does the body produce it exactly? If not, can it be produced artificially?

Time to hit yet another road of research. These roads get long, especially on holidays when I am sitting here by myself. The fact is, that documentary was produced in 2008 or so. Articles written that I was finding in 2013 and even this year don't back-up or refute the claims on telomeres 100%. Or at least, over the past five to six years nothing has substantially been done to quell the debate which is this, summed up in one of the articles "Either you're healthy, so you have longer telomeres, or you have longer telomeres and that's why you're healthy."

OK, so FUCK YOU telomeres.


Another research road that turns into a dead end. I'm sick of those. The funny thing is that it does support one basic principle though that doesn't seem to EVER change. Short telomeres, long telomeres or NO freakin' telomeres, if you exercise, eat a healthy diet and do some meditation or Yoda or something that keeps your stress levels from raging out of control, maybe laugh every once in a while, it stands to reason that it would make ANYBODY'S shit sandwich a bit more palatable, right?

OUT.

Friday, June 13, 2014

Swinging in the Planet of the Apes


There is a reason why I don't take my family out much. A reason why most of the time, we tend to stay home, and out of the scrutiny of the public eye. I'm not a handy person whatsoever, and I mean NADA, and yet I purchased and built, with very little help from the wife (just enough to lift it when the time came) that swing set you see above, all by myself.

Why does the picture look so weird? I took it through a screened in window. Hey...I was making a statement. I may be a Special Needs Dad, and a wackjob, but the artist in me still has to come out from time to time. Sue me.

I built this monstrosity in the backyard of a home that I am renting so that my disabled son would have a place to play without being gawked at, stared at, laughed at and giggled at. Yet even here, you can see how exposed we are...it does happen.

I think of all the things that happen when Bennett is around other people, though, nothing bothers me to watch more than what DOESN'T happen, and by that I mean the non-stare, stare. That action that occurs when Bennett is, to put it mildly, completely and utterly ignored, as if he weren't even standing there at all.


And it happens a lot more often than you might expect. I get it. Before I entered this Universe? I did the same thing. One of these days, in a different blog I want to talk about that. The Invisible People, a term used to describe people with AIDS, Homeless, many people ignored throughout history, and how much we miss by not paying attention. One kid in particular, a grocery bagger at a local Meijer up the street. Nice kid. There's a cool story there.

We are human beings, so full of flaw, so replete with a lack of empathy or sympathy for anything that is different or not consistent with what falls within our world view of normal. Black, white, gay, heavily tattooed, disabled, even...gasp...Republican! :) Anything that is not in someone's definition of what they consider normal is That Which is to Be Feared.

I always laugh a little when I walk into the local small town Post Office and glance up at the identity theft poster. I look JUST like the guy when I take off my Walter White geek glasses. Bald and a goatee, which in our world signifies Evil. Never quite understood that.


Bennett's own brother does the Invisibility Thing. Carter, as much as I try to teach him otherwise and have utterly failed to do so, will walk up to me to say good night, kiss me on the head (he does that for some reason, could be the bald thing) and says 'Good night, Dad.' He then turns and walks away. Bennett will say 'Ni-Nite Car-Car! I luw YOO!' as Carter is walking away, and Carter just keeps on going. He doesn't hear it, he doesn't care, and he does nothing to respond.

I've talked to him about it, I've discussed it in counseling, together. There is a lot of resentment there. A part of me understands it. Bennett came into this house and essentially destroyed it from his point of view. I have some concept of why he feels that way. It's hard, but I see it. It does not make want him to stop trying though. And of course I push, probably too hard.

I'm a father who wants to see his two sons get along, be together, be partners. More likely I'm part of the wedge that separates them.

This only gets more difficult for me to manage when I see how others marginalize and segregate and separate. Truthfully? As each year passes and Bennett gets older people start to have a broader range of reactions toward him. But I am waking up to the fact that this is true of not just my son, but all of the disabled, and most of the reactions are not the warm and fuzzy kind you see in a movie that you expect to star Jennifer Aniston, and it disturbs me how little our race has evolved.


Welcome to the Dawn of the Planet of the Apes, and maybe not even THAT far, since when it comes right down to it, I see how quickly we start throwing shit at each other when certain subjects come up, particularly in some of these articles I have been reading after my last post when I made the decision to start a new round of research regarding Autism, aggressive behaviors and the like.

The fucking COMMENTS...they are like a vortex, they suck me in and as much as I try with every molecule in my body, and I have a LOT of molecules, trust me...I can't seem to stop myself from looking down there. And once I start, I get enveloped by all the shit and slime and filth and foulness that our fantastic species has to offer.

Some of the issues out of many that we are trying to solve in regards to Bennett's disabilities are his sleep cycle disruptions, how to manage him as far as teaching him from a behavioral modification standpoint how to cease throwing the heaviest toy in the room at my head when I deny his request for a cookie, for example, and also how to keep him from gravitating towards the kitchen sink on a regular basis to turn it on for self-stimulation.


Interesting what leads you where. Combined with a couple of keywords, and thanks to a suggestion by Elizabeth, famous blogger...oh wait...AHEM...famous AUTHOR, she of the titillating long titles, amazing cakes, relentless advocacy and startlingly large blog header photos, who has a new kindle version of her book Hope for a Sea Change: A Guide to Healing (which needs no pimping from my tiny little thing I have going here, I can assure you), who said on one of my Facebook posts I should look into Prada-Willi for kitchen help, I stumbled on this article about a boy in my neck of the woods, Ohio.

That's why she's the author and I'm the blogger. Even I can't make heads or tails of the sentence I just wrote. But I write like I talk, it's how I ROLL. And I had to be extra careful with the titillating and titles part. Spelling and such were critical there. One wrong move and I have a scandal on my hands.

Couple of things jumped out at me about the article. The first was the fact that the boy, Anthony, spent a good portion of his day in what they called the 'chill room' at his school. Actually, there is a room called the 'Sensory Room' at the public school where Bennett went this past year. He spent a good deal of time in there also. Bennett went there many times when his behaviors became too difficult to manage. He would get tired and the teachers would let him nap in there, sometimes between 2-3 hours. I saw that, right or wrong, as avoiding the issues, rather than allowing Bennett an opportunity to experience Kindergarten.

This is not a casting of blame on anyone in the system. I met with people there, and efforts were made for Bennett. I truthfully don't believe we as parents pushed hard enough, but that is another blog and another story entirely. Let''s just say this about that. I learned a lot this first year.

But I do think the napping allowed his sleep cycle of waking up in the middle of the night to continue even worse than it used to. Rinse, lather, repeat. So he was ALWAYS tired in the afternoons. Even on weekends, we simply could not keep him awake. Now don't get me wrong, I encouraged the teacher to allow him to take a short nap. I believe in the power nap. But key word? Short. You have to then after an hour max start to try getting the boy up and back into the activities of the day. These medications kick his ass, and the only way to breaks cycles is by trying. The only way to break behavior patterns is to have a plan.


The other thing that jumped out at me was the idea of the room itself. I've been going back and forth on the idea about something like that here in the home. And researching its effectiveness when it comes to Behavior Modification Therapy and violence in Autism and TBI. Until this latest round of research? I had no idea the level of controversy that even existed about these rooms, across not just the country, but the WORLD. And how badly they can be abused by people who are not trained to use them properly. Especially in schools.

In some cases it can be effective in the home, if everyone is on the same page and it is used the right way, but I still have to get my head around it if I ever decided I was going to pull the trigger. That's a tough, TOUGH decision to make as a parent, and I'm not quite there yet, mainly because I don't feel like I have enough information, and the last thing I want to do is something that makes matters worse than they already are.

And when I say pull the trigger on a decision like that, I'm talking about feeling like I am backed into a corner. For me, the decision to go down that road therapeutically is me making a choice between, say, building a quiet room in the home with a managed care plan by a licensed Behavioral Therapist, or having Bennett living in a residential facility.

Plus, I'd need to be sure that whoever is caring for Bennett in the daytime, and it remains to be seen where he will be in the daytime come Fall, we've ALL got to be on the same page with his care. There has to be absolute consistency. And someone needs to be sure it is all being coordinated and followed. I'll need help, and I need to find some, maybe with where he attends, maybe outside of that. I just don't know yet.

But like I said before, all this is about is me looking for alternatives and possible new paths to explore. This happens to be one of them that I found, and it spawned a few tangents that are leading down other paths to explore.

In a way? I'm kind of glad I don't have the type of readership that someone like Elizabeth has. That kind of exposure. I write in this blog, and always have I suppose, for me, to work out my own thoughts. It's my journal. Or as my good friend once commented, my 'self-analysis'. It's online in the off-chance it resonates with someone, and it has from time to time done that and connected me with people who have resonated with me. But I often fear that if it grew, if it became something more than this, that the Apes would rise up and then what would I have to do then when the shit started to fly in the comments section?

I'm not sure I would want to have to go to my own tree-house and be faced with comments like the ones I was looking at in that article by Carol Costello. I don't know that I would be able to keep my mouth shut, or if I would have to start changing the way comments get left as far as filtering and so forth.

Here's the real tragedy of it though. All it serves to do is make me wonder when I am 'out there', wandering amidst the urban jungle, what people REALLY think, how they REALLY feel. And the majority of the time, based on how I observe body language. how I study the faces and the eyes in the sea of our so-called 'humanity', most of what I see isn't all that far removed from what I read.

OUT.

Thursday, June 5, 2014

A Birthday Wish to One of the Good Ones


Funny...I remember Eddie's birthday more often than I remember many of the birthdays of my friends who are still around. So I'm not sure what that should tell me.

It either means:

A) I'm a real bad friend.
B) I have a bad memory in general.
C) Eddie was just one of those super amazing, good people who got in your head, stuck there, and never, ever will go away, no matter how many years pass since he did.

The recent events that went down with my sister had Eddie on my mind a lot, as did a nugget of knowledge I received about my grandfather, who I never met. To me, this was all new info, but apparently my grandfather died at the age of 47 of a heart attack. This was years ago, before I was born, so no condolences please. My mother swears she told me this, and I believe her. I must have blocked it out.

I turn 47 this year.


That is what one refers to as food for thought. The only food, it seems, that is safe for me to eat these days. I'm certainly glad I quit smoking when I did, but man...I sure have so much more to do with the heart problem history we have in this family. So much more. The stress levels I live under aren't helping at all. I gotta learn me some techniques that I can live with.

I miss you, Eddie, but I am not sure I am ready to catch up on The Walking Dead quite yet. Happy Birthday pal...hope you are celebrating with a Romero marathon while you play with some Walking Dead Mini-Mates or something cool like that.

They have VCR's up there, right? Or they still using Betamax? :)

OUT.

Tuesday, June 3, 2014

Jail Time


As I attempt to wade through the wreckage of some of the more difficult aspects of this parenting/disability War Zone, I've reached the inescapable conclusion that most, maybe all, of the previous tactics I have been using to date have either been unsuccessful or I haven't been using them as forcefully as I should be.

And don't misunderstand the term 'force' there. I don't mean to infer a sort of physical FORCE, rather my meaning is that of I am not pressing as hard on the buttons I set up to try to initiate certain changes in Bennett's overall behavior. But after a while, you get...weary. This is some tiring shit.

I have a...yeah, I'll call him a friend, in the military, and just a second ago I started thinking 'Hm...should I really be comparing raising a child with multiple disabilities and severe aggression to fighting in war? Is that fair to a veteran like him?'

Thought about it...and I think it is.

No one is trying to kill me, yet. But many psychological stress factors can be compared, and I know myself well enough to know...what he does? That's big time different. I'm just making an analogy here. It's no different than when I compare our lives to a zombie apocalypse. There are bits and pieces of truth (and brains) to the comparison, but it doesn't mean I literally view my son as the Walking Dead.


So apologies to my buddy, and any other veterans, but it feels like a War Zone sometimes, or a Zombie Apocalypse. But remember, we have grenades! :)

Anyway, my point to all of this, yeah there was one, is that I feel like I almost need a reboot. In every aspect in how I am approaching Bennett and his care. And not just that. A reboot in Carter and my approach to parenting him. A reboot in my roles in other aspects of my life. Just so many things that require retooling and refitting. But since all of it hinges on The Kid, he always gets priority. Sucks, but it is what it is.

We'd been creeping up some of Bennett's medications, hoping they might satiate the beast inside, but it doesn't seem to be having the desired effect. His experience through Kindergarten had a brief honeymoon period that was over SUPER FAST. I now regret having moved him to public school so quickly.

But, we had to know for sure. So what can I do? He's headed back to a special school next week. Whether he returns to public school in the Fall or remains in a special school will be determined over the next couple of months.

Christ, I used to be in such...denial over Bennett. I'm not anymore. Though I am extremely conflicted and confused. Part of this 'reboot' requires starting over with Internet Researching. Something many of you Special Needs parents are all too familiar with. It can have some major suckage. So many paths that lead nowhere. So many paths that lead to awesome places too (like some fuggin' great blogs you see on the right hand side of this page I have found by doing the surf thing).

But here is a big...obstacle to overcome when sifting through the research rubble.

I have a sneaking suspicion that Bennett had Autism all along. I think Bennett was just born different. I think he got the super whammy jammy with the brain tumor, then the Infantile Spasms, then his misdiagnosis (that missed the tumor) which prolonged the epilepsy, and ultimately the surgery which took out such a big portion of his brain.

Thing is, in case you hadn't noticed, I like dick jokes, I am no genius...there is a LOT of information to process about Traumatic Brain Injury, life after Brain Surgery, Epilepsy, Brain Tumors AND Autism and all have a relationship to aggressive behaviors. It is The Biggest Cluster Fuck of The Century to that boy...and navigating the information out there has always been difficult.


Especially because some of it has to be done while dodging iPads. I'm telling you...Big Grips. That blue cover in the picture right above here. It is BAR NONE, and this is not a paid product endorsement, but it is THE KING SHIT OF TURD ISLAND when it comes to protective iPad covers for kids who like to toss their iPads in anger. How long has Bennett had this iPad that Joyce drove to our old house to give him? I can't remember. YEARS.*

And he has tossed this thing like a horseshoe all over the place. He chucked it at my very expensive, and very Smart (smarter than ME) TV about a week ago. Both iPad and TV? They were fine. Me? I nearly peed myself. It is an awesome cover. You can order one from Amazon I think for 30 bucks. BETTER THAN INSURANCE.

(Just now, as I was refining this before publishing, he smacked the shit out of my arm because I would not reward him with a cookie after some rather difficult behavior where he was doing all kinds of things he was not supposed to be doing. Ironic that some of what I was reading over the past few days involves families and their frustration over just telling their child a simple no, and the fear that often accompanies it.)

One article I stumbled on in my new round of studies last night was after he had gone to sleep. I was more focused since I could stop dodging and weaving. OK, it's not THAT bad, but I'm not sugar-coating it...he's out of control sometimes and it is not an easy life for any of us.

The article, here's the link, was like many I had seen that evening. Giving just a TASTE of info, but only a very small amount I could use. Like eating vegetarian. Sure, you are eating food. But you don't actually feel like you consumed anything of substance. This article speaks about a small Canadian study. I don't think Claire conducted the study, Canada is fairly big I think. It is, right? It essentially says that families with kids who have autistic kids there is a high percentage of aggression and it is a real problem that isn't getting the attention it needs from professionals.

OH REALLY?

What sucked me in is the same thing that ALWAYS sucks me in...the comments. MAN I wish they would delete stuff like that in legitimate articles. Save commenting for blogs and Facebook. I can't resist reading that shit. Some of it was interesting. Some of it repugnant (as it usually is), and for the most part? It can be disheartening as all Hell.

Hopeless much?

But waddya gonnna do? Exactly what I planned to do. So I just bookmarked it, put it in its designated folder, and kept on searching.

Reboot, reboot, reboot. Keep telling myself that. And yeah, I am hoping something new shakes loose from this. One major thing keeps popping up that I'll talk about in depth later, so I think this is perhaps the right call.

Way I see it? I don't have any other choice. The woman in the article who said that living in this situation feels like jail time wasn't far off at ALL. Anyone in situations like these, and not just with children who have moderate to severe aggression, but a ton of other situations can be applied here with a lot of other disability scenarios and beyond...bottom line is that ANY situation where you feel trapped, isolated, alone...it feels like you are in a prison and you can't get out.


And I want out. I want my family out. If not all the way out, then at least as far as we can achieve within our limitations. And if I have to crawl through a river of shit to get there, I'm going to do what I can to do it, starting with a slog through the World Wide Web and see what's out there now as opposed to oh...a year and a few months ago or so. The theory being that between the last time I did a heavy round of Internet searching for answers and this time I will be doing a heavy round of Internet searching for answers, maybe I'll find something or someone with a slightly different angle than I found before. You never know.

It may not be possible, but I certainly won't know if I don't look. Even if it yields nothing new or eye-opening, what's the alternative, really? The alternative is to wait around until someone trades me for a pack of cigarettes.

And I quit smoking.

OUT.



*(Well, now I remember...I looked it up, and that link is courtesy of my diligent research. You're welcome. The sad thing is...I re-read that post myself...and to think that I had come SO close to having a solid foundation of Faith again and to see where I am today? That's tragic to me. BUT...I was also HEAVY into giving iPads away then too, and there has to be a correlation to that, what I wrote about my Mom a few days ago...that's another post entirely Gotta let that stew in the pot a little.)