OK, so my ENTIRE life I've been told that I really am some lost refugee from the '60s. That I was born 10 years too late. That I should have been at Woodstock (go look it up if you don't know what it is :D), that I should have lived in the era of tye-dyed shirts and bell bottom hipster jeans and peace signs, and sex, drugs, and rock & roll. Peace rallies and Folk Singers with songs of protest. When everyone had a CAUSE they believed in, and would fight, risk going to jail, because of that cause. All of a sudden, at the ripe old age of 47, I've managed to find myself in the position of ACTIVIST.
I fit the definition. I have a cause, I'm passionate about it, I'm diligently gathering as much information as I can on the topic, AND, I'm continually looking for ways to 'stick it to the man' as they would have said in the 60s/70s. Now, we'll just say, 'paralyze my opponents'. It's truly been a fascinating, eye-opening experience (by the way, I haven't started writing folk songs...yet). One I'm sure will get passed down at the family dinner tables when I'm 102 and my great-grandchildren want to hear about what a rebel their Great-Grandma was. How much trouble she caused (I'm still wondering if I'll end up getting arrested yet or not, that one is still out for debate).
One thing I've noticed is that people, in general, are stupid. They get "stuck" on an idea, regardless of how preposterous, and you can't change their mind for anything.
Another thing: people LOVE conspiracy theories. UFOs, JFK, can Twinkies survive nuclear holocaust? Did Bill Clinton REALLY inhale?? Was Arlen Specter really a robot after his brain surgery?? (honestly, it kind of appeared that way). The more outrageous the theory, the more likely people are to believe it. Or, at least be influenced by it.
In the past few months, I've watched more "responsible, reasonable adults" resort to name calling, tantrums, and other childish behavior that I truly care not to mention. Instead of working together as a community to solve a community's problem, people are divided, yelling at each other, insulting each other, resorting to pot-shots behind anonymous names on FaceBook (ok, I can almost understand kids doing this sort of thing because it's childish and ridiculously immature, but ADULTS???, come on, be serious).
I feel like I'm stranded out alone on a desert island. I'm trying to figure out REAL methods to solving the issues, while everyone else is acting like 10 year olds. I'm spending DAYS doing research, I'm contacting the people I need to contact and sharing what I need to share and moving on. They think I'm a radical. I've been called "evil", "diabolical", "genius", "insane", "naive", and "ridiculous". They think there's not much hope for what I'm working for. I DON'T CARE. If I can get ONE person in a higher position that me to think, than my efforts won't be in vain. I'm so frustrated, I have a few close people that I can trust to talk things out with. But, I can't share what I'm thinking with too many because now, on top of everything else, we're playing "spy". If the other party finds out what I'm doing, then there will be time for them to counter my actions. That would not be good. So, I'm running around in secret, digging up information, trying to figure out how best to use it, afraid that someone is going to inform on me.
And all I WANT to do is sit back and flash peace signs at everyone, wear tye-dye and put my purple hair up in pigtails.
I said, WAR, huh
Good God, y'all
What is it good for
Absolutely nothing
Say it again
-Edwin Starr
Tuesday, August 17, 2010
Tuesday, March 16, 2010
It is in my world...
That's my son's new expression. If I've not mentioned it before, he's on the Autism spectrum. PDD-NOS, which for those not Spectrum-oriented means "Pervasive Developmental Delay - Not Otherwise Specified". Pretty much meaning, he's got delays in speech, in fine and gross motor skills, and in social skills, but we can't be any more specific than that about it. Duh. He's 8 years old but acts more like he's somewhere around 4 or 5. So, he's DELAYED, and there's no specific reason for it. Good technical name for the condition, eh? It mostly just confuses people.
He's smart as a whip. Has a nearly photographic memory. Remembers conversations practically verbatim, but if you try to sit him down to take a standardized IQ test (which doesn't make sense to him because that is NOT how his brain is wired), he'll test close to what is considered "mentally retarded". Which, just by talking to him for 2 minutes, you can tell he is not. That sort of makes me angry. Standardized tests cannot be used to test EVERYTHING. Sometimes, things just don't quite fit into tiny little boxes.
The very best example I've seen of spectrum thinking was at Sesame Place, an amusement park based on Sesame Street which is about 10 minutes from where we live. The Variety Club (BLESS THEM) works with the Autism Society of America to create a day JUST FOR spectrum kids. They tone down the lights and the music so that the kids with the sensory issues don't melt down. They instruct the character players not to go TO the kids, but rather, let the kids come to them, which is necessary as some of these kids cannot bear to be approached by a stranger....even if that "stranger" is someone they feel they know, like Elmo. It's a great day. The kids have the park to themselves all day and it's not very crowded, so there aren't long lines at rides or anything like that. It's pretty cool. On to my example. One of the absolute favorite "rides" is the MoonJump. It's basically a giant pit of huge air filled tarps, and kids go in there and bounce around all over the place. They bounce higher than they can jump because of the air beneath them. It's sort of like a trampoline, only kewler. Well, our son, like everyone else wanted to go in there. They let about 30 kids go in there at a time, now remember, these are all spectrum kids going onto this ride at the same time. If it were what we now refer to as "typical" kids, you'd have 30 kids bouncing around like jumping beans for the 5 minute duration of the ride. Watching the spectrum kids was miraculous to me, it showed the spectrum in a way I'd never seen it before. Some kids were standing perfectly still, or trying to as the floor flowed beneath them. Some sat down, like they were in a boat on the high sea. Some laid down flat on their back to watch the sky and enjoy the sensations, while others laid on their stomach and just rode the waves. Some were jumping like ping pong balls, never stopping for a second. Others were jumping as high as they could only to collapse in a heap on the mat beneath them and then ride it out. Every single kid was riding that ride their own individual way. 30 kids, 30 unique ways to use that bouncer, as opposed to the "typical" kids who all go in and literally jump (or 90% of them) like sheep because that's what you're "supposed" to do in there. But, our kids did this THEIR way. It was kind of awe-inspiring, finally a little glimpse into the minds of these kids. That they looked at this ride and saw it a totally different way than it's intended use, and that's how they used it. In a way that felt "RIGHT" for them. It didn't hurt anyone, it didn't bother anyone, it was simply different.
And I think that's pretty much how their whole lives are in general. At least, for my son. He doesn't hurt anyone, he doesn't really bother anyone (except, I must admit, the hyperfocusing thingy can really work my last reserve-nerve), he's just seeing things different. It's not his job to explain to me how he's seeing it is different from how I see it. It's enough for me to just know it's different, and if I need to know, then it's on me to figure it out.
People need to be a lot more understanding. The number right now is 1 in 150, that's going to drop. I think it's closer to 1 in 100 now. I read an article about why there are more boys affected than girls. I'm thinking that it's possibly the next step in the evolutionary chain. The super male gene. Males are more systematic, more analytical, less emotional, less empathic. They're checking the testosterone levels in pregnant women now to see, and the females that are developing autism have higher levels of testosterone. This is a very new study. But, it wouldn't surprise me a whole lot. We just have to learn how to unlock the puzzle. Not try to fix them.
My son's favorite expression right now is "It is in my world." Or, "Not, in my world". Like he'll say the sky is green and I'll say, no, it's not and he'll pipe up with "It is in my world."
I would dearly LOVE to see his world.
~marz~
He's smart as a whip. Has a nearly photographic memory. Remembers conversations practically verbatim, but if you try to sit him down to take a standardized IQ test (which doesn't make sense to him because that is NOT how his brain is wired), he'll test close to what is considered "mentally retarded". Which, just by talking to him for 2 minutes, you can tell he is not. That sort of makes me angry. Standardized tests cannot be used to test EVERYTHING. Sometimes, things just don't quite fit into tiny little boxes.
The very best example I've seen of spectrum thinking was at Sesame Place, an amusement park based on Sesame Street which is about 10 minutes from where we live. The Variety Club (BLESS THEM) works with the Autism Society of America to create a day JUST FOR spectrum kids. They tone down the lights and the music so that the kids with the sensory issues don't melt down. They instruct the character players not to go TO the kids, but rather, let the kids come to them, which is necessary as some of these kids cannot bear to be approached by a stranger....even if that "stranger" is someone they feel they know, like Elmo. It's a great day. The kids have the park to themselves all day and it's not very crowded, so there aren't long lines at rides or anything like that. It's pretty cool. On to my example. One of the absolute favorite "rides" is the MoonJump. It's basically a giant pit of huge air filled tarps, and kids go in there and bounce around all over the place. They bounce higher than they can jump because of the air beneath them. It's sort of like a trampoline, only kewler. Well, our son, like everyone else wanted to go in there. They let about 30 kids go in there at a time, now remember, these are all spectrum kids going onto this ride at the same time. If it were what we now refer to as "typical" kids, you'd have 30 kids bouncing around like jumping beans for the 5 minute duration of the ride. Watching the spectrum kids was miraculous to me, it showed the spectrum in a way I'd never seen it before. Some kids were standing perfectly still, or trying to as the floor flowed beneath them. Some sat down, like they were in a boat on the high sea. Some laid down flat on their back to watch the sky and enjoy the sensations, while others laid on their stomach and just rode the waves. Some were jumping like ping pong balls, never stopping for a second. Others were jumping as high as they could only to collapse in a heap on the mat beneath them and then ride it out. Every single kid was riding that ride their own individual way. 30 kids, 30 unique ways to use that bouncer, as opposed to the "typical" kids who all go in and literally jump (or 90% of them) like sheep because that's what you're "supposed" to do in there. But, our kids did this THEIR way. It was kind of awe-inspiring, finally a little glimpse into the minds of these kids. That they looked at this ride and saw it a totally different way than it's intended use, and that's how they used it. In a way that felt "RIGHT" for them. It didn't hurt anyone, it didn't bother anyone, it was simply different.
And I think that's pretty much how their whole lives are in general. At least, for my son. He doesn't hurt anyone, he doesn't really bother anyone (except, I must admit, the hyperfocusing thingy can really work my last reserve-nerve), he's just seeing things different. It's not his job to explain to me how he's seeing it is different from how I see it. It's enough for me to just know it's different, and if I need to know, then it's on me to figure it out.
People need to be a lot more understanding. The number right now is 1 in 150, that's going to drop. I think it's closer to 1 in 100 now. I read an article about why there are more boys affected than girls. I'm thinking that it's possibly the next step in the evolutionary chain. The super male gene. Males are more systematic, more analytical, less emotional, less empathic. They're checking the testosterone levels in pregnant women now to see, and the females that are developing autism have higher levels of testosterone. This is a very new study. But, it wouldn't surprise me a whole lot. We just have to learn how to unlock the puzzle. Not try to fix them.
My son's favorite expression right now is "It is in my world." Or, "Not, in my world". Like he'll say the sky is green and I'll say, no, it's not and he'll pipe up with "It is in my world."
I would dearly LOVE to see his world.
~marz~
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