handful_ofdust (![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
handful_ofdust) wrote2009-09-24 10:37 pm
handful_ofdust) wrote2009-09-24 10:37 pm
What It Is
Tomorrow's Cal's fifth birthday; no Surrey Place, so that'll be fun. Though grantedly, I could choose to take it as an excuse to get him out to the park and run him around like a maniac, which he absolutely needs. And sometimes it's really nice to have the time to re-bond with him, too--so scratch that first part, on second thought; it may be inconvenient and/or annoying, but that's fifty per cent of the whole kid-having experience (on a good day;)).
Which reminds me: Classy people that they are, those horrible assholes at Autism Speaks have produced yet another PSA ("I Am Autism!") which compares my happy, exasperating, charming, loving son to a shell possessed by sociopathic demons, a human car accident who will never be able to do anything for himself, who will destroy my marriage, etc. It goes on to blame vaccination as a "cause", and hold out false hope through pseudo-scientific BS for a potential "cure". I get that they want my money; I get that they're--hopefully--deluded and terrified rather than genuinely evil. But man, when I see shit like that, I truly do want to punch somebody in the face and keep on punching until there's nothing left but a red, mushy mass of plasma.
Do not think for a single second that I don't understand and appreciate how incredibly lucky I am, by the way, in terms of always being able to look at Cal and see him first, rather than his Autism. Yeah, some days the behaviors make it hard, like when he fixates on a particular verse or song to the exclusion of all else and will not stop repeating it, no matter what; he did that earlier today, actually. The nursery rhyme in question was "There was a little man and he had a little gun/And its bullets were made of lead, lead, lead...", and he did it ten different ways in various different combinations: Rapped it, sang it, declaimed it, folded it to fit the tune of everything from "I Saw Three Ships" to "Lollipop" by Mika. After which he fell on his knees and screamed like he was being stabbed when I made him wear his new backpack, tore off his diaper and peed on the floor in the foyer, and later took two hours to fall asleep, opening the door and running singing up and down the apartment over and over, until he finally lost consciousness.
But the fact is? I have it pretty fucking easy, overall. I can talk to him and know he understands me. I can tell him to do something and have him do it, at least as often as with any other five-year-old. I can joke with him, hug him, tickle him, know he loves me and wants to be near me. This puts me extraordinarily ahead of the curve, compared to some people.
And yet, contrary to what those shitheads at Autism Speaks would have you believe...Cal is not some sort of "savant", either. Over the course of his post-diagnosis life, I've seen far more kids like Cal than I ever have of the kids who are utterly unresponsive, or self-injurious, or impossible to teach the most basic of skills, let alone to instill with some sort of sense of self-control.
He's my guy, and he's going to have as good a life as I can give him 'til he can make his own way, and carve out a life for himself. And even then, it's not like I'm not going to help, much as he may not want me to anymore. I will love him until I die.
Screw this morally bankrupt scare-tactic culture of eternal infantilization, of eternal "patient-hood"--the Cult of the Sick, new Millennium stylee. People with ASD are neither saints nor demons, just people. And speaking from my own experience alone, the sooner you figure out kids can change even without having to be "cured", the sooner you'll see those changes...all it takes is hard, gruelling, depressing, endless years of work.
But if you actually love your kids, as I can only assume you do, then that's no big surprise, right? You'd do that for them anyhow, ASD or not.
You'd do whatever.
You'd do anything.
Which reminds me: Classy people that they are, those horrible assholes at Autism Speaks have produced yet another PSA ("I Am Autism!") which compares my happy, exasperating, charming, loving son to a shell possessed by sociopathic demons, a human car accident who will never be able to do anything for himself, who will destroy my marriage, etc. It goes on to blame vaccination as a "cause", and hold out false hope through pseudo-scientific BS for a potential "cure". I get that they want my money; I get that they're--hopefully--deluded and terrified rather than genuinely evil. But man, when I see shit like that, I truly do want to punch somebody in the face and keep on punching until there's nothing left but a red, mushy mass of plasma.
Do not think for a single second that I don't understand and appreciate how incredibly lucky I am, by the way, in terms of always being able to look at Cal and see him first, rather than his Autism. Yeah, some days the behaviors make it hard, like when he fixates on a particular verse or song to the exclusion of all else and will not stop repeating it, no matter what; he did that earlier today, actually. The nursery rhyme in question was "There was a little man and he had a little gun/And its bullets were made of lead, lead, lead...", and he did it ten different ways in various different combinations: Rapped it, sang it, declaimed it, folded it to fit the tune of everything from "I Saw Three Ships" to "Lollipop" by Mika. After which he fell on his knees and screamed like he was being stabbed when I made him wear his new backpack, tore off his diaper and peed on the floor in the foyer, and later took two hours to fall asleep, opening the door and running singing up and down the apartment over and over, until he finally lost consciousness.
But the fact is? I have it pretty fucking easy, overall. I can talk to him and know he understands me. I can tell him to do something and have him do it, at least as often as with any other five-year-old. I can joke with him, hug him, tickle him, know he loves me and wants to be near me. This puts me extraordinarily ahead of the curve, compared to some people.
And yet, contrary to what those shitheads at Autism Speaks would have you believe...Cal is not some sort of "savant", either. Over the course of his post-diagnosis life, I've seen far more kids like Cal than I ever have of the kids who are utterly unresponsive, or self-injurious, or impossible to teach the most basic of skills, let alone to instill with some sort of sense of self-control.
He's my guy, and he's going to have as good a life as I can give him 'til he can make his own way, and carve out a life for himself. And even then, it's not like I'm not going to help, much as he may not want me to anymore. I will love him until I die.
Screw this morally bankrupt scare-tactic culture of eternal infantilization, of eternal "patient-hood"--the Cult of the Sick, new Millennium stylee. People with ASD are neither saints nor demons, just people. And speaking from my own experience alone, the sooner you figure out kids can change even without having to be "cured", the sooner you'll see those changes...all it takes is hard, gruelling, depressing, endless years of work.
But if you actually love your kids, as I can only assume you do, then that's no big surprise, right? You'd do that for them anyhow, ASD or not.
You'd do whatever.
You'd do anything.
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Organizations like that may start out with good, great intention, but sometimes their own bureaucracy takes over and the it ends up supporting itself.
Boy, am I a pessimist.
Happy birthday to your little guy. May he give you and your family many pleasant surprises this year.
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I smiled at the rapping, declaiming, and folding to fit "I saw three ships" and "lollipop"--especially "lollipop." And hugs to you--or a toast of the drink of your choice--for stepping up to those years of work. It's not easy. But hopefully you get by with a little help from your friends.
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Wish Cal a happy birthday for me.
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Sad to say, but some people are just gits.
And a most Happy Birthday to young Cal :)
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Everyone has challenges and some are just more obvious than others....that's the attitude I've come to have as I've raised kids.
As you know, my oldest boy is a constant concern, but he's 22 now, and mommy still tries to help when she can, just like my parents continue to help me!
And I can't believe that he actually lives on his own and has found a line of work that he loves and is good at and is making his way in the world. So you just never know!! The struggles do pay off at some point.
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I can't believe that people continue to ignore all scientific evidence to the contrary and choose to blame vaccinations as a 'cause'. I shall use my new favourite UK expression to sum them up: twats!
Take care, Gemma. Hope to see you soon - either this fall in Toronto and/or in Brighton in the spring.
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(Hugs you, hugs Cal) - probably run into you at Word on the Street tomorrow?
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