Spent the night reading the reports the therapists typed up for/after the IFSP a couple of weeks ago, because I stumbled across the pile where I had carefully filed it (read: stashed it under some old phone books and ancient magazines on my desk for safekeeping).
They didn't say anything surprising. We all had already discussed our pleasure with James' progress long before the meeting, and which goals we thought we working, and useful, and which we should ditch, and what we should do instead.
None of this was new.
So why, when I read these descriptions of the kid I see every day, of the behaviors I am as familiar with as I am my own - perhaps more - why does it suddenly pierce me cold with the realization of HOLY SHIT. MY SON IS AUTISTIC.
He may not get any better than this.
He may never learn to talk. Or dress himself. Or... or ever get to be NORMAL. To have any of the things my other kids can take for granted, like friends, or days when everything isn't a freaking teachable moment.
I find myself hoping that if he can't go one way, he should go the other: be SO autistic that he won't notice the stares when the behaviors that, at 2, can be waved off by strangers,aren't waved off anymore, and people shun him openly.
And they will. My glorious experience in the field has taught me that, oh yes. Ask anyone who has a visible handicap; the world is a nasty place, and unfeeling, and often downright hostile, especially for autistics, who frequently don't LOOK handicapped, and so their behavior seems to offend all the more when they have the gall to be themselves in public.
And my heart breaks for this beautiful sunny little guy of mine, who has a mother who wonders if maybe it would be better if he never got past this age, mentally, so he could always be sunny.
Dear gods, what is wrong with me?
Monday, October 18, 2010
Monday, October 11, 2010
Future Shock
There are, as you may have noticed if you are alive and have either your sense of vision or hearing semi-intact, numerous studies out there detailing all kinds of stuff about autism. None of them offer any definitive answers (though many claim to), many of them are at odds with one another on any number of points, and certainly trying to learn anything useful from them can be about as much fun as a raging sinus infection. No, scratch that - they're not even that much fun, usually.
So of course, my friend Google and I read them compulsively.
One theme that has been popping up of late is that of puberty and the autistic child. (There's a REALLY bad joke in there somewhere, but since I'm talking about my BABY BOY, fuhtheluvofgawd, I will not go there. But don't let me hold YOU back!) Specifically, the articles keep mentioning how the onset of puberty can bring about a massive upswing in aggression.
Which brings me to thing #4,376 I now stay up at night worrying about:
What will happen if Jamesy, who really isn't very tantrum prone at all, even for a 'normal' toddler, but who IS built like a little fireplug, becomes one of these aggressive kids? Am I physically capable of restraining him? What if I'm not? Will he have to go to a group home? Will I have to send my child away?
Now this WAS just one of the many amusing little conundrums with which I would occupy myself in the dead of night when there was nothing else (like, say, sleeping, or being sane) to do. But it has been promoted to Relentless Nagging Nausea-Inducing Fear, First Class, because of a friend of mine.
Now she hasn't done this to me on purpose; quite the opposite. I'm sure, if she knew (and she reads this blog, so she will shortly) she would be filled with remorse, which is ridiculous, because she has been the most supportive and information-packed person I know through all this. In fact, she is the only reason I feel I have any control over the whole get-James-help process at all, because she first showed me where to get the information I needed to get organized about this stuff. (And I'll bet she didn't even know I felt that way!) I owe her a debt of gratitude a mile wide. (Can debts be measure in miles? What IS the correct standard of measurement for gratitude? And do you see how I will do almost anything not to talk about the real topic here, and yet I can't leave it alone?)
Ok, so. We love her. And she loves her kids, holy wow! She is a serious All-American mom. I'm talking, the kind of mom I am not even worthy to look at the Facebook pictures of. Unfortunately, however, her own autistic son is experiencing just the sorts of issues that I have been reading about lately, and he has required hospitalization as a result.
And holy shit. I. Cannot. Imagine. My heart breaks just thinking about HER thinking about it! How on earth can you make such a decision? I don't mean her eventual choice - I mean, the nasty, gut-wrenching, soul-burning process of making the decision itself. Do I turn my baby over to other people?
And oh, it makes me MAD!! (!!!!!!) Not at her - far from it - but at the universe! No matter how much you know you are doing the right thing by your kid (or at least, the best you can with the information at hand)... what the hell kind of world makes you unable to love these kids back to wellness? Because if aggression could be stopped by the force of love, man, this kid would be cured and they'd all be millionaires on the lecture circuit. But instead, the person (ok, people: credit to her hubby, too) who is the closest to this beautiful boy, who knows his 'stuff' the best, who GETS him, and oh by the way adores him - she has to be the one to tell him he can't come home.
And then SHE has to go home. Without him.
Jesus fucking christ.
This is a nightmare. C, I am so SO sorry you are having to deal with this, and I am routinely awed by the grace under pressure which you exhibit. I apologize for never having told you what a great example you have been to me, and I hope telling you now will help you get through even one minute of this crap with slightly less AAAUUUUGGGHHHH!
And readers, I apologize for blurting all this out at you. Apparently, I self-medicate with blog therapy. (Fewer hangovers than Cuervo, but doesn't taste nearly as good with salsa.)
By way of further apology, I offer you the following photo vignette:
Below, we see what happens when you stop to tie someone else's shoe and you think that the presence of a fence and half an acre of yard is enough to prevent small boys from using their Spidey Sense to locate overturned kiddie pools full of standing (disgusting, probably critter-filled, possibly alien-breeding) water and debris.
Please note the sneakers, still on. The new, WHITE sneakers. Yeah.
Next, we see what happens when our mother is old and fat and tripping over the fence and siblings in her hurried quest to reach us, but she isn't there yet, and so we can still do stuff:
And, in case any of YOU would like to recreate this lovely style yourselves, a brief how-to:
("The end" *grin*)
So of course, my friend Google and I read them compulsively.
One theme that has been popping up of late is that of puberty and the autistic child. (There's a REALLY bad joke in there somewhere, but since I'm talking about my BABY BOY, fuhtheluvofgawd, I will not go there. But don't let me hold YOU back!) Specifically, the articles keep mentioning how the onset of puberty can bring about a massive upswing in aggression.
Which brings me to thing #4,376 I now stay up at night worrying about:
What will happen if Jamesy, who really isn't very tantrum prone at all, even for a 'normal' toddler, but who IS built like a little fireplug, becomes one of these aggressive kids? Am I physically capable of restraining him? What if I'm not? Will he have to go to a group home? Will I have to send my child away?
Now this WAS just one of the many amusing little conundrums with which I would occupy myself in the dead of night when there was nothing else (like, say, sleeping, or being sane) to do. But it has been promoted to Relentless Nagging Nausea-Inducing Fear, First Class, because of a friend of mine.
Now she hasn't done this to me on purpose; quite the opposite. I'm sure, if she knew (and she reads this blog, so she will shortly) she would be filled with remorse, which is ridiculous, because she has been the most supportive and information-packed person I know through all this. In fact, she is the only reason I feel I have any control over the whole get-James-help process at all, because she first showed me where to get the information I needed to get organized about this stuff. (And I'll bet she didn't even know I felt that way!) I owe her a debt of gratitude a mile wide. (Can debts be measure in miles? What IS the correct standard of measurement for gratitude? And do you see how I will do almost anything not to talk about the real topic here, and yet I can't leave it alone?)
Ok, so. We love her. And she loves her kids, holy wow! She is a serious All-American mom. I'm talking, the kind of mom I am not even worthy to look at the Facebook pictures of. Unfortunately, however, her own autistic son is experiencing just the sorts of issues that I have been reading about lately, and he has required hospitalization as a result.
And holy shit. I. Cannot. Imagine. My heart breaks just thinking about HER thinking about it! How on earth can you make such a decision? I don't mean her eventual choice - I mean, the nasty, gut-wrenching, soul-burning process of making the decision itself. Do I turn my baby over to other people?
And oh, it makes me MAD!! (!!!!!!) Not at her - far from it - but at the universe! No matter how much you know you are doing the right thing by your kid (or at least, the best you can with the information at hand)... what the hell kind of world makes you unable to love these kids back to wellness? Because if aggression could be stopped by the force of love, man, this kid would be cured and they'd all be millionaires on the lecture circuit. But instead, the person (ok, people: credit to her hubby, too) who is the closest to this beautiful boy, who knows his 'stuff' the best, who GETS him, and oh by the way adores him - she has to be the one to tell him he can't come home.
And then SHE has to go home. Without him.
Jesus fucking christ.
This is a nightmare. C, I am so SO sorry you are having to deal with this, and I am routinely awed by the grace under pressure which you exhibit. I apologize for never having told you what a great example you have been to me, and I hope telling you now will help you get through even one minute of this crap with slightly less AAAUUUUGGGHHHH!
And readers, I apologize for blurting all this out at you. Apparently, I self-medicate with blog therapy. (Fewer hangovers than Cuervo, but doesn't taste nearly as good with salsa.)
By way of further apology, I offer you the following photo vignette:
Below, we see what happens when you stop to tie someone else's shoe and you think that the presence of a fence and half an acre of yard is enough to prevent small boys from using their Spidey Sense to locate overturned kiddie pools full of standing (disgusting, probably critter-filled, possibly alien-breeding) water and debris.
Please note the sneakers, still on. The new, WHITE sneakers. Yeah.
Next, we see what happens when our mother is old and fat and tripping over the fence and siblings in her hurried quest to reach us, but she isn't there yet, and so we can still do stuff:
And, in case any of YOU would like to recreate this lovely style yourselves, a brief how-to:
("The end" *grin*)
Monday, October 4, 2010
Meteor Showers
It has been a wily and weird few days (weeks?), centered mostly on much low-grade but disgusting illness for everyone, full of biological functions I'd rather not discuss for fear of sparking a flashback, and somewhere in there, Number One's 9th birthday has become an ongoing celebration that never... quite... ends - since we keep postponing various parts "until everyone is better". The kid will be 40 before he finally has his party, apparently.
However... this is not one of those griping-about-puke posts. (Hooray!)
This, instead, is a celebration of the interesting flashes of language we are seeing in Jamesy lately! We can't get him to repeat them (he just shakes his head "no" at you and grins, the little ratfink), but every few days, he comes out with something amazing, and so clear that it is indisputably whatever we think he is saying.
For example:
While having his diaper changed, listening to Dumb Ole Mom cooing "We're going to change your diaper, stinky man, yes we are, time for a diaper change, gonna put a new diaper on" and similarly stimulating banter, he looked up at me with those big blue eyes and said "dipe on". Quite emphatically. And then waited to see what I would do. (I, of course, reacted as if he had just started spontaneously spouting winning Megamillions numbers.) This one was heard by his brother and father as well.
Of course, now, every time his diaper needs changing, I babble on and on and ON about "diaper ON, dipe ON?" and he just looks at me as if to say "If I aim just.. right... I'm pretty sure I could pee right into that mouth you won't close."
He also, after being heartily congratulated by D.O.M. for his failure to thrash like a tackled alligator during a particularly onerous (and odorous) diaper change, said "eye fi" when I made him high-five me. Again - witnesses! But he won't repeat it. And now, when I'm done "Dipe ON"-ing him, I am a high-five fanatic.
(It occurs to me that perhaps my insistence on repetition is not exactly positive reinforcement for having said something once. He's probably all "Woman, PLEASE" and dreading every word he says because he knows I'll turn it into an obsession. Who could blame him for resisting?)
So TODAY, while be diaper-changed (are we seeing a theme here?), before I had a chance to go through my usual shtick, I asked Number One to read me the names of the therapists due for a visit today off the giant white board we have set up for just that purpose, so he said "Rebecca at 12:15"... and James dutifully repeated "ah beck ah" and laughed at me.
While I could dwell on the obvious insurrection lurking beneath the placid surface of my deviant toddler, I will instead simply say that knowing this stuff is in there - even if it has trouble coming out currently - fills me with great joy :)
However... this is not one of those griping-about-puke posts. (Hooray!)
This, instead, is a celebration of the interesting flashes of language we are seeing in Jamesy lately! We can't get him to repeat them (he just shakes his head "no" at you and grins, the little ratfink), but every few days, he comes out with something amazing, and so clear that it is indisputably whatever we think he is saying.
For example:
While having his diaper changed, listening to Dumb Ole Mom cooing "We're going to change your diaper, stinky man, yes we are, time for a diaper change, gonna put a new diaper on" and similarly stimulating banter, he looked up at me with those big blue eyes and said "dipe on". Quite emphatically. And then waited to see what I would do. (I, of course, reacted as if he had just started spontaneously spouting winning Megamillions numbers.) This one was heard by his brother and father as well.
Of course, now, every time his diaper needs changing, I babble on and on and ON about "diaper ON, dipe ON?" and he just looks at me as if to say "If I aim just.. right... I'm pretty sure I could pee right into that mouth you won't close."
He also, after being heartily congratulated by D.O.M. for his failure to thrash like a tackled alligator during a particularly onerous (and odorous) diaper change, said "eye fi" when I made him high-five me. Again - witnesses! But he won't repeat it. And now, when I'm done "Dipe ON"-ing him, I am a high-five fanatic.
(It occurs to me that perhaps my insistence on repetition is not exactly positive reinforcement for having said something once. He's probably all "Woman, PLEASE" and dreading every word he says because he knows I'll turn it into an obsession. Who could blame him for resisting?)
So TODAY, while be diaper-changed (are we seeing a theme here?), before I had a chance to go through my usual shtick, I asked Number One to read me the names of the therapists due for a visit today off the giant white board we have set up for just that purpose, so he said "Rebecca at 12:15"... and James dutifully repeated "ah beck ah" and laughed at me.
While I could dwell on the obvious insurrection lurking beneath the placid surface of my deviant toddler, I will instead simply say that knowing this stuff is in there - even if it has trouble coming out currently - fills me with great joy :)
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