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.