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.


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.


*(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.)


  1. Nothing particularly useful to say, just that a lot of what you're describing is what I read on the hemi groups. I don't know of any hemi parents who are also dealing with autism, though I imagine they're out there, but brain injury and aggressive behavior go together way too much of the time. (And hemiparesis and seizures go together as well.) And the research? That's the sucker punch. You get through the day (and my day is a hell of a lot easier than yours) and you get the kids to sleep and then you're supposed to try and research and find stuff you haven't found before, that no one has suggested to you before? That isn't on the other side of the country, that insurance will cover, that might actually work for your kid's unique situation? And do it again the next night because you didn't find anything the night before... Read something from a parent of an older teen who had pretty significant aggressive behavior (now under control). She said she refuses to refer to her son's medications as behavior modification meds. She called them brain medications because the brain is an organ just like any other. No one judges her or her son when she says he's on heart medications, why should they judge her or him for his brain meds? I realize other people's judgement isn't your issue, but I liked the matter of fact approach to treating the brain. It is an organ. It has amazing powers to rewire itself (some of the time) and recover from injury. No way our kids would be in the shape they are today if they were missing comparable portions of their hearts. But the scars brain injuries leave...

    1. Hey Annika,
      I know this is an ancient comment, but I am still trying with him. So I'm going back...reading everything, turning over anything I may have missed. Do you remember what medications your friends son was taking?


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